The OK Corral

the past few months, in cell phone pics

2012-02-13T20:53:00.005-06:00

several captured moments over the last few months

in no particular order

waiting for our first teeth cleaning

shoulder ride on Grandpa!

pool time last summer

who doesn't love the ball pit?

waiting for his MRI

lounging in the bouncy seat

at the Market with mom and Nonna

waiting patiently for her turn at pics

newborn cutie

too early for smiles, Rhys before his adenoid removal

Zoe helping her Nonna sell some goodies

Rhys watching Shamu on our October trip to Sea World

Zoe's first day of MDO

Rhys's first day of school

baby Beckett on the way home from the hospital

Rhys playing with his Mack truck

baby girl making a run to grab lunch back in August

sweet baby B

Rhys after his adenoid removal, poor kid

kiddo update

2012-02-01T09:45:00.007-06:00

Lots going on around here. Nothing new, or necessarily exciting, just life. Three kids keep us busy, and with ours being so close in and it's a little nuts. Combine that with Rhys's extracurricular therapy and I'm one tired momma most days.

I've been struggling recently with the desire to go back to work and the need to make sure everything is properly taken care of at home. Well, that isn't a recent thing, but I've felt it a lot more the last few weeks. I don't want to leave my kids, but I am desperate to feel like I'm doing something that doesn't consist of planning meals or nap time, or scheduling doctor's appointments that don't interfere with our weekly routine. I never planned on being a stay-at-home mom, so this is really confining for me. Don't get me wrong. I am well aware that we are most fortunate that I can stay at home, and that I get this opportunity. I am blessed to be able to see my kids grow. But I also miss my career. And while I'm not crazy about the idea of having to juggle life with two working parents I feel I really need to think about this. The longer I am out of my career the harder it will be to get back in, to find a job, to leave my kids. The farther I will be behind the others in my field that are my age. I have little desire to be 35 and starting into an almost-entry level position. And I loved my job and miss the challenges my line of work posed to my now-mostly-fried brain. So I am struggling with what to do. As of now I've been off work for three years. That seems like an eternity, even though I realize in the whole scheme of things it isn't that long.

In the meantime, Cody has started a new job. It is a great opportunity for him and I'm proud of him for doing this. It's hard to move away from something you like and feel comfortable with, to move into the unknown. I'm very excited for him, but it means a little jolt to my routine. He now works 9-80s so that means I have to get up a little earlier and be home with the kids longer in the afternoons by myself. The next few weeks will be trial and error to get a new schedule down, but I'm sure we'll figure something out.

What are the kids up to?

Rhys:

Is doing great in therapy! He has been riding the modified bicycle at PT. Similar to the one we have here at the house for him, but much more beefed up. He was peddling by himself!
Is taking lots of steps in his gait trainer. He understands that he can move from point A to point B now, which is great. He still scissors his legs a bit, which impedes his progress. Man if we could get rid of that problem he'd be flying! Oh, and we are trying to work to get him to stand upright instead of leaning forward on his handle bars. But making progress nonetheless.
Has lots of new words. The ST is very impressed with his ability to make sounds. He has difficulty making noises/sounds on command, but the ST admitted that he surprises her quite frequently with what comes out of his mouth. He points a lot now, which is very helpful when your child has little to no vocabulary.
Is still doing great is school. It was rough for a day or two getting back into the swing of things after the Christmas break, but he is back into his groove. He has learned where is nose, mouth, ear and eyes are and will point to them when asked. He also knows a couple of colors, but isn't consistent with identifying them.
Will point to pictures in a book and look at you as if asking "What's this?". He will go picture by picture until he points to each picture and receives a response from you.
Is totally in love with the Jorge minion from Despicable Me. A plain ole' plastic blow up promotional doll was included with the movie and that poor thing has been tossed and beat up and loved on quite a bit the last few weeks. Rhys talks to it like it's a real person. I dread the day it gets a hole that can't be patched.

Zoe:

Is oh so sassy. If I had to give a one word description of her, that would be it! She is full of spunk and has serious attitude.
Loves school. Her little personality is starting to shine. According to her daily reports she is a leader in the class and loves art. One of my most favorite things is getting her art when I pick her up. She recognizes her friends when we walk into school and seems to play very well with them when I spy on her from the window peep hole.
She loves her brothers and is very helpful to them. She brings Rhys and Beckett toys and tries to "help". She knows the routine when Rhys gets off the bus, and Monday she helped me push him into the house and get him unbuckled. I am forever amazed at how much kids pick up just by observing. She knows we unbuckle him and then remove him from the chair, and she made the motions to assist. Very funny!
Favorite phrases are "What's this?" and "Where is it?". Some kids ask "Why?", but Zoe will ask "What's this?". And she asks it of everything. Everything! She points, taps her little finger and looks at you as she asks. As soon as you tell her what she's pointing at she will move on to the next item.
Recently started swim. She now goes the half hour before Rhys's lesson. I am in the pool with her for a parent/child class and she has really surprised me at how quickly she's picked things up. Aside from water safety I am sort of kind of hoping she may want to do swimming as a life-long activity. Or a sport, that would be great. I can swim, but have no technique and always wished I would have had an opportunity to learn.
Knows a few colors (pink and green), as well as the signs for them. She also says "two" and "five" in the appropriate sequence when I start counting one, two, three... I started doing that months ago to distract her from things and I guess she's picked up on it. She loves her baby dolls and is very into shape sorters.
Has a short fuse. She gets very frustrated when things don't go her way. Especially if a toy doesn't cooperate with her attempts to play with it.

Beckett

Is my PLD, what can I say? I'm totally in love with the boy. He is such a sweetie and loves his momma!
Can sit unassisted, and does very well for the most part. He still can't sit up to play with toys without having a few balance issues, but he is well ahead where Z was at this point. She really didn't sit unassisted until seven-and-a-half months.
Grabs at everything. He loves to touch and feel and put things in his mouth. I don't remember Zoe being that into chewing on things like he is.
Still wakes up to eat at night. Sigh. I'm still working on it, and we're moving in the right direction, but the boy only sleeps for about 6 hours at a time at night. He is eating solids really well and is still on breast milk. He rarely gets formula, but will take a bottle as needed. I'm starting to give him water, but he isn't crazy about it.
Rolls and scoots all over the place. He isn't up on all fours yet, but I think he's close to figuring it out.
Loves to be held. He is such a happy baby, but especially when he's held. But he is stubborn. Yes, I can already tell.

more of my babies

2012-01-24T11:47:00.000-06:00

six-month-old sweetie

2012-01-15T13:54:00.005-06:00

love him

pieces!

this could be said of any parent of a special needs child

2012-01-13T21:43:00.003-06:00

Parents of special needs kids get so fed up with having to deal with people who may not be uncaring but simply don't take the extra moment to understand. We are connected to our children in ways that other parents cannot understand. We know without anything being said just what is needed at any given moment. We learn to anticipate what will happen next. We become educated in the legal, medical, and government arenas more than some people who have degrees in those fields. We learn to fight the fight and go into battle with a smile on our faces because we have to not because we want to. We learned the hard way just what must be sacrificed in order to get the care and attention our children need. We learned to give more of ourselves to that child than we would ever conceive of giving to another human being. We not only live it, eat it, sleep it, we also dream it.

Our lives are consumed by the care of our children. Our lives don't exist except for the care of our children. Everything we do revolves around what may be needed next for that child. We have been humbled, humiliated, felt guilty, made ashamed, brought to the point of begging at times, made angry, made determined, driven to the point of desperation, all for the sake of our children. We have sat in hospitals for days, weeks, months praying that our child makes it one more day, praying that our child lives long enough to know how much we love them, stood the onslaught of surgeries that could be life threatening, procedures that could make the situation worse, been through treatments that would make a grown man cringe, all in an attempt to make our children better. We have died a little inside every time our child cries from the pain of all these things. We have dispensed more medication than a pharmacy could hold. We have tried every crazy experiment, every suggestion made, every piece of equipment, every new medication, every strange idea on the hope that it might work. We have dealt with quacks, con-men, inexperienced people, uncaring individuals, rudeness, and cruelty toward our children. We have lost everything, sold everything, traded everything in the pursuit of help for our children. We have given up friendships, family, relationships, and marriages all for our children. We have other children that have given up parts of their lives for this child. Children who never complain while they do without so this child may have something needed.

We have learned to be realistic people. We know how bad the situation can get and that we may lose our children before their time yet we hope for that one cure that will make it all go away and give us our lives back. We hope that we can help another parent or people in the future by sharing our ideas, thoughts, angst, miseries, hopes and dreams. We have been made strong by the honor of being in the presence of a child with the courage to face more needles, more doctors, more surgeries, more treatments and procedures with a smile on their face. We have stood strong when our children have lost the battle and gone before their time. We say we are okay all the time when inside we are struggling to make it one more day. We know the potential our children have, we see their abilities as well as their limitations when they go through the procedures, treatments, surgeries, and struggle to accomplish even the smallest tasks. We are made strong by seeing the courage, determination and – most of – the hope in that child’s face every day. We do this EVERY SINGLE DAY of our lives. So PLEASE do not treat us as if we do not know what we are talking about. We have learned to face down worse tragedies, more complicated messes, and deal with more situations than you can imagine. We have been bent, sometimes broken, medicated, treated, depressed, angry, sad, and most of all a little fearful of the future. We have slayed more dragons, conquered more worlds, invented more items, discovered more truths, and all for a smile when that child is happy. We are diplomats, advocates, fighters, unlicensed doctors, therapists, surgeons, nurses. We are a formidable force to be dealt with when it comes to our children. We have neglected our spouses, other children, housework, jobs, friends, family, society, and our own health because we have been busy in the pursuit of a better life for our children. So do not think that we are incompetent – instead remember that we are soldiers in the battle for a better life. We are more focused on which battles to pursue. Not for ourselves but for a person who cannot do it for themselves. So listen to us when we speak because we know what we are talking about. Don’t talk down to us, respect the fact that we are caregivers of the most special people in the world. We have an honor you will hopefully never receive, we earned it the hardest way possible, and we carry that badge of honor with us in every single thing we do, every word we speak, and every action we take.

~Borrowed from post on a blog we follow, credited as "so perfectly written by Candace Barnes - A Cerebral Palsy Mom"

Christmas

2011-12-25T22:51:00.003-06:00

My babies.

This is the best picture I could come up with. Crusty noses, dirty faces and all. Poor kids were tired from the 9+ hours in the car over the last four days.

Merry Christmas from our zoo to yours!

everyone has the sniffles

2011-12-21T20:35:00.005-06:00

There's nothing like Christmas with sick kids. Well, this is a first, but it still stinks! I tell you, I hate that my kids are passing germs left and right. I liked it much better when my kids were never sick, but I guess we had to leave our bubble at some point. Rhys had Botox done again Monday and was nauseous and puking all day yesterday. He had no fever so my first thought was that it was related to the sedation. Then I second guessed myself and thought maybe he had a bug. He was acting exactly as he did from the sedation with his MRI, and was more or less dry heaving by the end of the day because his stomach was completely empty. I think we decided it wasn't related to the versed, but instead the Botox. His lovely doctor called him in an Rx for the nausea yesterday afternoon. One dose and ten minutes later he was perfect. He woke up great this morning and was good all day long, no meds necessary. He had no problems with his first round of Botox, and he didn't get nearly as many this time so I am wondering what happened. Hopefully we can control it with the nausea meds next time if he reacts badly again. Other than that he has a cough and drainage. Zoe has a runny nose, but is otherwise fine, and my poor little Beckett is also coughing with drainage. If Zoe doesn't keep her grubby little fingers out of his mouth (and sippy cup and toy kitchen spatula) when my back is turned I'm going to have to tape mittens on her hands!

Rhys's tricycle

2011-12-19T17:17:00.002-06:00

please vote!

2011-12-12T21:40:00.003-06:00

I never ask anyone to do this, but here is my exception. Several weeks ago this couple was featured on the national news. Maybe you saw it. If not, there is a news clip on the link below. They offer modified tricycles for special needs kids who need a little extra help. They operate only on donations, and each tricycle is provided to children free of charge. This man and wife donate their time for this effort. The lady's name is Connie Hankins. And I just had a conversation with her, during which she asked if I'd go to this site and vote for her to win a new car. Yes, a new car. She was nominated by her daughter and she is currently in second place. I told her I'd do even better and I'd post it to Facebook and my blog. It takes about two minutes, because you have to register, but please take the time to go to the page and vote! You can vote once a day through the end of the month I believe, and for your vote to count you must vote for both an individual and a non-profit. I do not know these people personally, but as the mom of a special needs kid I very much appreciate what they're doing.

Link to news story

Vote HERE!

chattering like a magpie

2011-12-02T09:31:00.005-06:00

Zoe is full of things to say.

Here's what we hear around here these days...

momma - "maa-ma"

dad - "dah da"

Nonna (grandmother) - "nonna"

Rhys - "wees"

baby - "baby"

ball - "ba"

water - "wa-wa"

wash - "wa-wash"

please - "pease"

cracker - "cacker"

truck - "cuck"

car - "car"

Dora - "orah"

"me" - when she wants something for herself

she signs "please" and "more"

well baby visits

2011-11-23T09:18:00.002-06:00

Rhys and Beckett just has their 3 year (yes, we're a little late) and 4 month well baby check-ups, respectively. Surprisingly, Rhys looks like he's creeping up the growth charts. He's almost always been on the growth charts, just on the short end, but based on height/weight this time they say he's at the 75th percentile. I don't trust doctor's office measurements one hundred percent, but they're usually close to what the very meticulous nutritionist got when she'd measure and weigh. Anyway, quite an accomplishment if I do say so myself. It isn't easy keeping this kid fed properly. In fact, it's downright stressful at times.

Beckett is 50th percentile for height and weight and looks great. I'm trying to nix is desire to eat every three hours. He will go up to five hours between eating, which is great, but that is probably only about one third of the time and he's old enough to go that long all the time. He is doing more at this age than what I remember Zoe doing. Of course I've slept many times since then and also been pregnant, so maybe I am not remembering correctly. His swing went kaput a few weeks ago and I didn't let myself buy a new one because I knew he was at the age he needed to more action, so buying a swing would have only been easy street for me.

MRI/neuro visit

2011-11-16T21:24:00.004-06:00

Rhys had an MRI last week... the one the neurologist mentioned way back in April. I was a little nervous about the anesthesia for the test, given the reaction Rhys had after his adenoids were removed. I'm still not sure if Rhys's increased oxygen needs were related to the actual surgery, the drugs they used to knock him out, or possibly the intubation, so I was really hoping he didn't have the same reaction after the MRI. I expressed my concerns to the anesthesia team, but (obviously) they still had to sedate him. They did explain that they don't actually use a breathing tube and instead do something just at the back of the mouth to help keep air moving. Other than being a total grouch for two days he did great with it all.

Today was our follow up with the neurologist. After comparing the first images (from when Rhys was in the NICU) to this MRI the neurologist is comfortable knowing that Rhys's damage was related to his prematurity and is not progressive. Not that we were worried really, but any brain damage can cause things like seizures, etc. And depending on where the damage is located, and what the scar tissue looks like, they can get a good idea of who may be more at risk for these other issues. As of now Rhys is not at risk and other than a yearly follow up we should be good. The only interesting thing that the doctor did find was where damage had occurred.

Rhys's brain bleed was on the left side of his brain. On the very first head ultrasound, done in the NICU when he was only a few days old showed, everything was normal. The second ultrasound is what revealed the brain bleed. All the damage Rhys has now is related to that event three years ago. However, in addition to damaged tissue on the left side of his brain, Rhys also has damage on the right side of his brain. Again, based on the scar tissue the doctor can tell it isn't from a recent event. So, the doctor was a little perplexed given that Rhys was initially diagnosed with only a grade III brain bleed on his left side. He did have an MRI in the NICU right before he was discharged, and that study was supposed to be delivered to our doctor several months ago, but we only viewed the old head ultrasounds today which is something entirely different. I meant to ask about that first MRI, but we'd had a very long day and I was running very late to let Courtney leave and I just forgot to ask about it. Regardless, we got a good report! And even though he can't really give us any insight into what the future may hold for Rhys he is very optimistic given Rhys's behavior and current abilities and just told us to keep trying as hard as we can right now because it will pay off in the long run. We've been told a million times that these kids' brains develop entirely differently than an average baby, and reroute pathways around the damaged areas.

Incidentally, the doctor and all (four) of his medical students got a huge kick out of Rhys constantly telling them "all done". He was giving high fives and even got a little upset when the medical students walked out of the exam room. He's quite the charmer when he wants to be.

help!

2011-11-06T15:39:00.002-06:00

Rhys is starting to scream any time we are in the car. Especially when we start to slow down. I'm talking full out screeching and back arching to where he makes himself choke. I don't think this is only a preemie thing or sensory thing, but it is definitely complicated by his quirks. We don't have the typical communication an average three year old would have so we can't try to reason with him or use any of the techniques I've heard about. Nothing we've tried can break through his screaming so we are at a loss as to how to handle it. And about to lose our minds. If it is only Rhys in the car we can ignore it to the point he starts gagging. But, I draw the line at allowing him to puke in my car because he is throwing a fit. If the other kids are in the car it is miserable for them and Z gets upset when Rhys starts acting crazy.

Any ideas? I'm about to call a behavioral therapist!

sick (again!)

2011-11-02T21:20:00.001-05:00

Poor Beckett can not catch a break. He's more or less had congestion on some level since he was a couple weeks old. I think I may have mentioned I thought he had the croup a couple weeks ago. While he had the tell tale "barking" cough, it was very mild and didn't last very long. Not the case this week. My poor baby has been miserable. He's trying so hard to give smiles, but then he coughs and starts whining. He tested negative for RSV, so I guess we should give thanks to Z for coughing in his face (before I could get over to stop her) last week and spreading the germs. He is getting better, but still has a ton of snot and has a hard time at night. I hate this! It reminds me why I stayed in with my kids up until R&Z started school. Yes kids are kids and will get sick, but in my case it would be easier for them to get germy when they're a little older.

Rhys recovered very well from his surgery. The morning after he was in tip top shape and ready to come home. He is his happy little self again and has been sleeping like a dream. No pun intended. I sincerely hope this has everything to do with the adenoids and isn't just a fluke. Several people have asked about the change in his voice/speech so I will take that too if it has improved. He is such a smart little guy, he's just trying to figure out a way to get it all out. I see him blooming and it makes my heart melt.

We are working very hard with Zoe on communication. Her vocabulary improves daily, and we've finally gotten her to start signing "please" and "more". She generally whines when something is like she wants or, but we're really pushing her to use words and motions to try to tell us what she wants. It's helped a bit, but she still has a temper. Testy, that one.

surgery recap

2011-10-21T19:04:00.004-05:00

my day:

woke up at 3:30 a.m.

arrived at the hospital at 6:30 for surgery at 7:30

passive aggressively scolded by the nurse for not arriving by 6 a.m. (seriously?!)

surgery at 7:30

removed "huge" adenoids

in recovery by 7:50

Rhys screamed

O2 sats are a little low

Rhys screamed

sat in recovery for four hours

while Rhys screamed

dr decides to keep Rhys overnight to monitor him

Rhys screamed

dr discovers nurse didn't have pulseox attached correctly

corrected pulseox reveals a much better O2 sat, but still a little lower than desired (mid-high 80s)

sat in recovery for another two hours

have I mentioned that Rhys screamed?

ate lunch in shifts

moved to a private room

came home to take over Z&B while Cody packed a bag

Cody headed back to the hospital

NP tells Cody Rhys is going to be on a clear liquid diet

after the ENT tells us he can eat whatever he wants whenever he feels up to it

Rhys eats a HUGE bowl of oatmeal because he is starvin' marvin

which bring us to right now... here's to hoping Cody has a pleasant night with the little man

PS - big thanks to Grammy for helping out today!

3 months old!

2011-10-14T23:36:00.002-05:00

Beckett is three months old today. Love him! I'll add a pic when I can get it off my other computer. Zoe is doing great in MDO and is a "leader of the pack" according to her teachers. Knowing her personality, that is more what I expected of her from the beginning and why I was thrown with her crying. I'm glad she's finally finding her stride and enjoying school. Oddly, Beckett got the croup from her school (it was going around) about two weeks ago, and Zoe is just now getting it. Beckett did really well with his, so I'm hoping Zoe's is just as mild. This whole germ thing is really disgusting, especially for a preemie mom. Cody says I'm OCD about germs since Rhys was born and I am constantly wanting to wipe down everything with Clorox. Rhys is having his adenoids out next week. I am still incredibly angry none of his doctors have questioned all his bad adenoid symptoms before now because I know good and well we've mentioned many of them on several occasions. So much (more) makes sense now with some of his quirks. I am hoping having the adenoids out helps something, I don't really care what, just something.

still here!

2011-10-06T00:40:00.002-05:00

Yes! We're still around. I can't believe it's been so long since I updated. I guess we're busy. Or something. All the kids are doing great. Rhys continues to do well in school and I do believe he is enjoying it. His weekly progress reports are amusing, and I love to dig in his backpack on Fridays to see what goodies he's made for us during the week. He doesn't fuss about getting on the bus now, and actually indicates he wants to sit outside on the porch in the mornings until the bus gets there. This morning a bus drove by (it wasn't his bus) without stopping and he cried. It was so stinking funny! We followed up with an ENT about Rhys's adenoids and not only are they extremely large, he also has a severely deviated septum and his right nostril is almost completely blocked. I guess that would explain the snoring and horrible fatigue. We go for another appointment tomorrow so I'm hoping we'll all agree on surgery and get it scheduled. I don't wish for surgery, but if I'm honest I am hoping this may help him in several areas... willingness to eat, no snoring, restful sleep, no fatigue during the day, less irritability, better appetite, improved speech. You get the picture. All these things can be affected by adenoids so I am hoping we may benefit even the tiniest amount in any of those areas.

Zoe is still a drama.queen. We're really trying hard to break her of her fit-throwing and screaming. Holy cow that girl can pitch a fit. Her daily report from MDO last Thursday read "basically she is very smart and has figured out that when she screams she gets to leave the room". Oh boy. During the first few weeks of MDO they took the kids who had trouble adjusting to nap time out of the room and pushed them through the hallways in a stroller. Of course Zoe loved this, so now apparently she thinks if she fusses enough they'll let her leave every day. Never mind that was a temporary thing and she now disturbs the other sleeping kids. I was almost embarrassed to drop her off yesterday! But overall I think she is finally starting to enjoy it, and I do believe it is good for her.

Little Beckett is growing like a weed! Poor kid has had a head cold more of his life than not. As soon as he got rid of the first round, Zoe brought home the croup! It isn't a very bad case (yet, and hopefully never), but he has a lot of stuffed up breathing and the telltale barking cough. No fever or problems eating luckily so I haven't brought him to the doctor for it. B is smiling and has two dimples! And he likes to snuggle. Both R and Z are (for the most part) great sleepers and can be put to bed without needing to be rocked or convinced to go to sleep. I fear Beckett isn't going to be that easy. He definitely likes the body contact and doesn't sleep as well when he is by himself. I wonder if he knows he's one of three I have to take care of?

our week in summary

2011-09-10T12:38:00.002-05:00

Monday: Holiday. No school for Rhys. Cody and I "slept in" since the kids didn't get up until around 7 a.m., then we did some work around the house.

Tuesday: Zoe has MDO, which was rather horrible for her. Lots of crying, though maybe a tiny bit better than last week. Rhys has school, he's getting better about getting on the bus without fussing. Immediately after Rhys gets home we set out to the med center for a doctor's appointment. He isn't allowed to eat because he is being sedated for Botox. I work myself up thinking how crappy it's going to be watching him have Versed shot up his nose, but he really surprises me and takes it like a champ! Dr. writes scripts for new AFOs and a feeding chair for Rhys.

Wednesday: Rhys has school, we skip OT so we can once again immediately head to the med center for a swallow study. As a first time visitor I have to navigate through Texas Children's Hospital, and quickly learn there is apparently more to the West Tower than just the one building. I find the hospital depressing as it is full of children with various illnesses. While trying to rush to make his appointment I get attacked by the elevator door and walk away with only half the nail on my big toe. Swallow study reveals a normal swallow as we predicted, Rhys is starving because they contaminated all his food and brilliant me didn't bring extra. Once home I have a message on my phone from the pathologist who did the swallow study. She finds what appear to be enlarged adenoids and recommends an ENT visit. Enlarged adenoids are apparently a common contributor to eating issues so I'm beyond annoyed no one has mentioned this to us before.

Thursday: Zoe does a lot better with MDO, though she is still crying a little. I left her lovie this time so maybe that helped. Rhys has PT in the afternoon and did great! The PT thinks the Botox really helped, she was able to get Rhys to walk (assisted) in his gait trainer about 15 feet. Rhys is in a great mood all day, I am really happy he seems to be taking to his new therapies so well.

Friday: Rhys misses school to have a gastric emptying study. No reason to believe he's having issues, we're just trying to rule everything out in an effort to get his eating on track. Cody takes Rhys while I stay home with the kids. About ten minutes into the procedure I get a text from Cody saying "shoot me". I actually find that funny and think welcome to my world! No word on the results yet, glad it's over. Swim in the afternoon in which Rhys was completely fed up and refused to participate in any "monkey crawling" around the pool.

Saturday: Not sure how I managed it, but I got about 9 hours of sleep last night. Who cares if it was occasionally interrupted by a hungry infant, that's about 4 more than I normally get!

more pics!

2011-09-06T20:32:00.005-05:00

The two older kids play very well together. They have their moments, but they love each other. Zoe occasionally torments Rhys and steals his toys, but she does share occasionally too, and tries to give Rhys kisses and pats on the back. Rhys on the other hand sometimes gets annoyed with Zoe and he'll grab her feet and not let go. Which as you can imagine doesn't sit too well with Zoe.

They were both giggling up a storm the other day so I walked in to see what was going on and found this.

Rhys had his Botox today. To be honest I was really dreading it. I don't know what exactly I was expecting, but it went over better than I'd thought. The Versed was given by basically squirting a syringe into the nose. Rhys didn't even fuss for that, but after a few seconds he started swatting at his nose and whined a time or two. It didn't take long for it to kick in though, at which point Rhys was a wet noodle. He got 8-10 shots in the back of his thigh, calf and inner thigh. He didn't fuss much with the shots either, just the initial stick, but once she was done he was over it. We'll see how this works out. He's really into pulling up on these little chairs in the playroom.

He does this all on his own, and is doing it quite frequently now. He still needs to support himself, but the fact that he is interested in this position is very promising. He's working towards eventually getting the urge to sit on his own! Whew, what a day that would be.

Drama Queen is in her second week of MDO. Day one was okay, but she was a little confused. Day two wasn't so great, she cried when I handed her over and then when I peeped in the window on the way out she was a little out of sorts. Today she wasn't so happy when I handed her off but when I peeped in (the classroom windows are covered with paper, except for "peep" holes the parents can look in) she was calmly sitting in someone's lap watching the other kids play. But when she was picked up this afternoon she was crying again. And, she refused her snack and didn't eat but three bites of her lunch. She really must have been upset if she refused her food. Anyway, I know the transition expected to be a challenge, but I am honestly surprised she is taking this so badly.

Her hair is getting really long, but she only allows a pony tail. no clippies or barrettes allowed!

Sweet baby boy has started spitting up. Quite a lot, and frequently. I just changed him before this pic and wouldn't you know he spit up as soon as I put him down. Beckett still eats every 2-3 hours at almost eight weeks old. He is a milk monster and it is honestly tiring having to keep him fed. But he is a cutie!

They're still in love with the cozy coupe. As you can see, it hasn't made it outdoors yet, except for the occasional ride from Cody up and down and sidewalks. They are both in this thing every single day.

busy first weeks of school

2011-09-01T05:35:00.003-05:00

The last two weeks have been crazy around this house. Rhys started school last Monday. He was so excited about the bus until Thursday rolled around, then it turned into an all out scream fest. According to the bus driver (who btw is fantastic, we will be loading him up with goodies throughout the year because he really takes care of Rhys), as soon as the bus gets moving Rhys is okay. And according to Rhys's teacher he has been doing well at school. So Rhys is up for school at 6:30 and gets home around 11:30. We have therapy/swim between 1:45-2 p.m. three days a week right now so Cody and I decided to try to cut out Rhys's nap on those days since it is very hectic trying to get Rhys fed, stomach settled and a nap in before it's time to leave the house. He's actually done really well with no nap, but we're still in transition mode and there have been a couple of days where he's been so exhausted by 4:30 that he's fallen asleep in the living room. So I've let him sleep for about 30 minutes and then gotten him up, which is another ordeal because he is still super tired and therefore cranky the rest of the afternoon. He is then in bed by 7:30, which hasn't been the norm for him for quite some time.

Therapy is going well. Surprisingly, the transition hasn't been too bad. He still has days of being an unwilling patient, but the staff is great and the facility is awesome as well. Aside from a few small difficulties of adjusting I really think the huge change-up of school and therapy is beneficial to him. He's really being challenged with all these new activities. We decided a while back to go ahead and try the Botox for Rhys's legs. He was scheduled for it yesterday, but Rhys has had a ton of drainage so I rescheduled it to next week. The doctor is using the Botox to hopefully help with the scissoring of Rhys's legs. He'll get Versed for the procedure, so he wont remember receiving the injections, but the Versed is given via nose drops so I am 100% sure Rhys (a) is not going to like that at all and (b) will definitely remember the drops the next time we have a visit to this doctor and most likely scream as soon as we get out of the car. We've also got a swallow study coming up, a gastric study (to see if maybe Rhys doesn't process food fast enough and that is some how contributing to his food aversions) and a therapy consult with speech. Whew!

Zoe started MDO on Tuesday. We handed her off without a single fuss and she did very well, but was so tired when I picked her up. All this running around is new for me since I'm use to hanging around the house, but somehow it works.

six weeks old!

2011-08-25T22:14:00.002-05:00

My newest PLD* is six weeks old! Man time is flying. Many things I remember being similar to when Zoe was his age, but many things seem to be taking me by surprise. This boy needs a milk cow. Seriously. He eats non stop. Which is great, but tiresome when you're personally required for every feeding. He's between 9.5 and 10 pounds now, so he's growing like a weed!

*precious little darling - there is a story behind this... I always told my mother that my brother was her PLD when we were growing up (well he still is) and could do no wrong, so it's kind of an endearment in our house now

His hair is still the medium brown it was when he was born. We'll see if that stays or changes colors as he gets older. Zoe's hair was a blackish brown when she was born and it is now very light brown. Rhys is still strawberry blond/brown. Both Rhys and Zoe have blue eyes as well. I find that amazing considering neither Cody or I have blue eyes (one of each of our parents do) or light brown/blond hair. Our kids seem to have gotten all our recessive traits, so I'm curious to see what Beckett ended up with.

Zoe just went for her combined 15/18 month well baby checkup. Baby girl is in the 90-95th percentile for height and weight and looks great. She is a little firecracker with a vivid imagination. Cody and I constantly marvel at what she comes up with. Today was meet the teacher for mother's day out. She starts next week and I am very excited for her. I loved watching her explore today and interact with the other kiddos.

school!

2011-08-24T18:18:00.002-05:00

Monday was Rhys's first day of school. It was a very long morning for him, before getting to school. He was up at 6:30 so we could give him his Pediasure and make sure he has enough time to let his stomach settle. He sat and watched his shows for a few minutes, got dressed and got into his chair. I had his bag packed and we were ready for the 7:26 bus pickup! Except the bus was late. And later still. So I called the bus contact and was told the buses were experiencing the typical first week of school delays. No problem. I Just needed to make sure they still had Rhys on the pickup list because I am physically not able to get him to school all by myself since I have no way to get him, in his chair, to his classroom with my two additional kids given their ages. School starts at 8:10, and as we approached and passed that time we decided to pack Rhys up and bring him to school ourselves. As we were walking out the door I got a call from the bus contact telling us Rhys's bus had broken down so we could either continue to wait or bring him ourselves. Cody wanted to see Rhys off to school on his first day so he was still at the house luckily. So we packed up the car with all the kids and Rhys got to school at 8:45.

Since he missed the bus the first day, here he is the second day! He was so excited about getting on the bus, but once he realized Cody and I weren't going with him he got a little upset. But he was fine by the time he got to school and his teacher told me he had a great day. So far so good. I think he is really enjoying his time at school. His after school bus driver has told me he's done great, and he has been in a good mood after getting home.

All this time change is killing me though. I don't get such great sleep because of Beckett, and now having to get up at 6:30 is making me a zombie. I'm really going to be crazy next week when Zoe starts school, we'll have constant activity four days a week.

a day in the life of...

2011-08-11T10:26:00.007-05:00

It's been a while since we've last posted, but we've been, er, busy. Or something. My day starts between 6 - 7 a.m., after a fairly sleepless night with many feedings. I try to let Cody sleep since he goes to work in the morning, but sometimes I have him change diapers during the night. So, Beckett usually wants to eat about the time Cody is getting ready for work. Cody gets dressed and helps me in the kitchen. If the older kids are up he will get them out of bed and get their breakfast started until I'm finished with Beckett. If they are still sleeping when he leaves I will stay in bed until they're up! Although that luxury is soon to be gone, since R & Z both start school in a couple of weeks.

With Beckett back to sleep I try to get R & Z's breakfast finished. Zoe is fairly easy, I can just stick her in the chair and she feeds herself. Rhys gets a bottle of Pediasure first thing in the morning, and he wont feed himself. So after his bottle, into his chair he goes to stay upright for 20-30 minutes to settle his stomach (he'll puke otherwise). While he's watching his shows I am back to the kitchen to clean up and put dishes away while Zoe is still in her chair. Otherwise Zoe is a such a helper she actually gets hinders my progress with her efforts. When Zoe is finished she gets down and goes into the play room to keep Rhys company by emptying all the toy bins. I try to finish picking up a little and stick a load of clothes on to wash. I get Rhys out of his chair so he and Zoe can play, and have about half an hour before Beckett is ready to eat again. Whew, got all that?!

We've been lucky to keep Courtney (aka the nanny), who gets here around 10:30 every day. She usually gets here as Beckett is demanding to eat, so I am off to feed him while she gives Rhys yogurt and tries to keep Zoe from tearing up the house. By the time I'm finished feeding Beckett I have a few minutes to go play with the kids before Rhys needs to eat lunch. Why all the focus on Rhys's eating? He has a jam packed schedule several days a week and if he isn't fed at the proper time he (a) doesn't get the maximum daily calories and (b) we miss nap time, which has to be precise for him to get enough of a nap in to not be cranky for his 1:45 therapy appointment that is 30 minutes away. So Rhys eats, sits upright for 20+ minutes while Courtney entertains him and tries to keep him from screaming about wanting on the floor, then he goes to bed at noon. Zoe usually has a snack after Rhys is done eating, then goes to bed herself.

Finally, some peace in the house! After both older kids are in bed for naps I have a chance to get dressed and then I feed Beckett again before having to get Rhys up and dressed and out the door for his therapy appointment. If I'm lucky I get to eat! We're there for 45 minutes, back in the car and then Rhys eats once he's back at the house. We don't have time to feed him before therapy, and we would not anyway on the off chance Rhys makes himself puke by pitching a fit at therapy. Yes, that happens quite frequently. And, yes it is as hectic as it sounds. I am forever grateful to Courtney for sticking around. The kids love her and it would be much, much more difficult without her. Actually, it would be nearly impossible because there is no way I'd even entertain the idea of taking all three kids out by myself at their current ages.

We purchased an outdoor water table over a year ago and Cody just pulled it out of the attic. Zoe seems to like it!

My sweet baby Beckett. He is starting to stay awake a little more, but mostly sleeps and eats. He's close to 8 pounds now. We had a little of an issue with the breastfeeding for the first few days after delivery, but we're now back on track!

Rhys meeting his baby brother. Rhys doesn't really care about the baby, and Zoe only does when she hears him. As long as you let her gently kiss and pat him she is perfectly fine leaving him alone. Which isn't to say we leave her with him unsupervised, we're not that nuts!

Rhys just celebrated his THIRD birthday with his friends at Chuck E. Cheese. Several people commented that we're rather adventurous for putting on a party with a three week old baby. It is very important to me and Cody to make things as normal as possible for our kids. All of them. If that means it's a little harder on us, so be it. Rhys already misses out on so much, and we refuse to have him miss out on things that are within our power to give him. Likewise, Zoe and Beckett will have everything we can give them, despite our difficulty and limitations with Rhys. It's not fair to any of them to have it otherwise. Why do we do it? For moments like this!

The kids just got a cozy coupe. Zoe, of course, has to help Dad by moving all the parts and running off with tools.

And Rhys enjoyed the Cody pushing him up and down the sidewalks so much that he pitched a huuuuge fit when it was time to come back in. I wasn't expecting Rhys to be able to ride in it so easily, but he did and he loved it!

pictures!

2011-07-22T21:19:00.008-05:00

Just after delivery, I'm looking a little out of it... I'm finally able to move without pain, though the bruises from delivery still itch like crazy and are giving me fits.

My sweet boy. He is such a doll. He's eating like a champ and sleeps better during the day than at night.

Our little drama queen. Holy moly she is giving us a run for our money. She climbs on everything and is testing her limits. She does everything for attention right now (not at all related to the baby) so we are trying to figure out how to correct her and get our point across without making a huge fuss out of things and giving her what she wants. Tough one, that.

Dad had to take Zoe to the park to burn off some energy the other day. Between the hundred degree heat and me being pregnant, we've mostly been in the house lately. According to Cody she absolutely love the slide, but wasn't sure what the mulch surrounding the play ground was all about.

Rhys loves to swing, but he still likes to lean backwards so it's hard for him unless it's in an infant type swing that has a higher back (which we have in our backyard).

I don't remember if I've shared this before, but this is Rhys in his gait trainer. And this is usually his expression. He is doing really well in it, but we are still having major issues with him pitching fits any time he is made to do something he doesn't care to do. We just had his nutrition/eating "disorder", OT and PT consult for private therapy this week and we are very excited about the team who will be treating him. They have great ideas, a ton of fantastic equipment to work on and have created some very aggressive goals for him to reach. just based on preliminary talk it looks like he will have school in the mornings and probably have various therapy 3-5 days a week. Hello, mama is going to be busy shuttling kids!

Rhys is 3 years, Zoe is 16 months and Beckett is 1 week old!

more on Beckett

2011-07-20T05:14:00.002-05:00

Beckett was born last Thursday, weighing 6lb 14oz and measuring 19.5 inches long. Not bad for a 36.5 weeker! Delivery went well, though my lower abdomen is black and blue from all their TLC during the procedure. It is currently a lovely shade of yellow-purple and itches to high heaven. Other than that I am taking a day or so longer to get rid of the soreness, as compared to Zoe's delivery, but I am moving well. I retained a ton of fluid from the IV (I lost count at 6 bags of fluid in less than 48 hours), but I am finally getting rid of most of it. Now if I could only catch up on sleep. Mr. Beckett eats on demand, anywhere from every one to three and a half hours. He is a beautiful baby and we feel blessed. I'll post more pics when I get a minute. One thing I we didn't underestimate was that we are now a three ring circus. But in a good way.

Introducing...

2011-07-14T17:50:00.003-05:00

Beckett William

6lbs 14oz

baby will be here next week!

2011-07-05T22:44:00.004-05:00

Baby will be born next week. I'm oh so ready to meet this little guy. I had an anatomy scan at the peri's office today and all looked well. The fluid around the heart looks normal, we're still expecting a boy, and the u/s tech says it looks like this little man has a head full of hair. Baby is still measuring at the 50th percentile and his estimated weight is 6lb 4oz. You may remember they estimated Zoe's weight at approximately 6 pounds one week before her birth, and she came out weighing 5lb 13oz. So even if Baby's estimate is on the high end he should still be a decent size. Plus, he'll technically be one week farther along in gestation than Zoe was so that should give him a little more time to plump up.

Even though I'm ready to have this baby I am completely dreading the c-section. Not the recovery, but the actual procedure. I had the closest thing to a panic attack I've ever experienced during Zoe's delivery. Something about being cut open while awake, plus being unable to move from the waist down, the nasal cannula, blanket on my chest and drape in front of my face made me claustrophobic. I remember staring at the clock thinking "please hurry up, please hurry up". My OB offered to knock me out for the delivery, but I declined. :)

So in less than two weeks our family will officially be that circus, with three kids in the house under three years of age. Cody asked me the other day if I realized I'd been pregnant 22 of the last 42 months. I'd not put a number to it other than noting this was our fourth child in almost exactly three years. That's a lot of stress on a body and boy have I been feeling it the last few weeks!

my bag is packed

2011-06-29T20:27:00.004-05:00

Er, not really. But, it should be. I have good intentions of getting my hospital bag packed, but I can't seem to get it done. I've said it before and I'll say it again... this poor baby is getting the shaft! From clothes to nursery, all the way down to me preparing for the hospital! We've got two weeks left until baby boy makes his appearance and I still have a to-do list a mile long. I have tried and tried to muster up the energy to get things done around here, but I always fall short.

Baby is doing great so far. We had about two seconds of alarm three weeks ago, but everything seems to be fine. I went in for a routine anatomy scan at the peri's office and they found increased fluid in the pericardial sac of the baby's heart. It wasn't a lot, just barely out of normal range, but it was more than had been there previously. The doctor surmised it was a reaction to the crud that went around our house several weeks prior, and subsequent weekly scans support her opinion. There is still a tiny amount of fluid, but nothing alarming, and it is decreases every week. Other than that things with the baby have been uneventful. I have had very few contractions my entire pregnancy, but have continued with the contraction monitoring and weekly 17p injections. Oh, and I got two doses of steroids last week for the baby's lungs "just in case".

In R&Z news, they are both keeping us extremely busy. Zoe is a busy little drama queen and Rhys is her partner in crime. They play well together and it melts my heart to hear them interacting with, and belly laughing at, each other. Rhys's new activity table came in and he loves it. As does Zoe. It's perfect for what he needs it to do. Rhys has started pointing at things recently, which is a big deal for him. We're hoping he will start using this as a means of communication instead of constantly whining for everything and giving us no direction. We've scheduled all his therapy consults to switch him from ECI to private therapy, and he was recently fitted for a new hip/leg brace we are waiting to be delivered. Zoe is officially enrolled into MDO starting in September. I am beyond excited for her to get this opportunity, but to be honest I am dreading the germ aspect of it all. It isn't bad when she's sick, but it is horrible to deal with Rhys when he gets sick because it always upsets his gag reflex, which in turn makes it tricky for him to eat. Between Rhys starting school with the ISD and Zoe starting MDO, I will have quite a bit of time during the week where I do not have three kids in the house. Party for mom!

equipment grant

2011-06-11T21:48:00.005-05:00

Several weeks ago the lady who provides vision services for Rhys mentioned a grant program that our neighborhood sponsors for kids with disabilities. She really didn't know much about it, only that another family in our subdivision (that she provides services for) had told her about it and she then passed along the information to me. So Cody and I searched our subdivision's website for more information. This program isn't advertised, and we'd obviously never heard of it, but sure enough there it was! We printed out the application and requested the maximum amount. I provided Rhys's story along with copies of all Rhys's pertinent medical documents. I felt fairly confident Rhys would qualify, but was shocked when we got the check in the mail today. It was 50% more than what we requested. We are so excited! We applied for, and I just ordered, this adjustable height table for Rhys.

It will be great with his floor chair, as well as his stander, which is identical to the one pictured. He is much more cooperative when his attention is occupied, but a height compatible table to either the chair or stander isn't something you just have around the house. The legs on this new table are adjustable so it will work for many things. I also ordered the raised edges to help keep his stuff on the table.

The second thing we applied for was an iPad for Rhys. This is what we were concerned wouldn't be approved, for obvious reasons. It seems like an extravagant request, and it is!, but it legitimately can provide great opportunities for development for kids like Rhys. He is in love with our cell phones, and has figured out that he can move things around with his fingers. Plus, the iPad has a million great applications for kids.

So we're very excited to get this stuff for Rhys. And we're very thankful Ms. Lucy thought to mention this grant program to us. The best part is that you can apply every year! This is better than Christmas for me, I love to get new equipment for Rhys!

more school, and teeth!

2011-06-01T22:06:00.005-05:00

Yesterday we went and sat in on the class Rhys will attend beginning next school year. I nearly teared up when I saw the group of kids doing their activities. I am so so excited for Rhys to start school! The class is similar to a preschool setting, with a very structured schedule and routine. There is one teacher and two aides, to approximately six kids. I was (for some reason) surprised to see that not all the kids are physically disabled. Actually, four of the five in the class at the time appeared to be typical in terms of verbal and physical ability. I'm sure there was a reason they are in the early education program, but my point is I think the social interaction Rhys would get from seeing other kids his age speak and walk will benefit him. The teacher mentioned that many of her kids are moving on to Kindergarten, so most of the new kids will be Rhys's age of 3. So, hopefully they'll be in school together for the next 2-3 years.

Speaking of school, I filled out the paperwork to enroll Zoe in mother's day out. She will go two days a week beginning in August. I definitely think Zoe's personality is such that she needs this, but I'm surprised to find myself hesitant to let her go. I have no problem with Rhys going to school, maybe because he is a little older. Anyway, I think Zoe will love school, and she too needs the social aspect.

And lastly, today we brought Rhys to the dentist for the first time. I've been to the dentist for as long as I can remember, and actually loved going, but I never had a cool pediatric dentist like this one. Well, I should say cool pediatric dentist office (even though the dentist himself was really nice too). This place was painted top to bottom with colorful murals, had a media room with a big movie screen and bean bags, individual movies playing in each exam room, and a toy chest to pick out a prize! Cody and I were completely dreading a Rhys meltdown, and even though he did scream and cry it wasn't as bad as I thought. The dentist only brushed his teeth and checked for cavities, so I think that helped. And he was unfazed by all the screams. Amazing! I was very surprised to find that Rhys's teeth showed no signs of cavities or decay. We brush his teeth as much as possible, and despite oral defensiveness Rhys mostly enjoys it, but Pediasure has a ton of sugar in it and I'm always worried we're not doing a good enough job. So our instructions are to try to floss (haha!) and keep on brushing as we're doing. We're to do the same with Zoe and then bring both kids back in six months... Rhys for his next checkup and x-rays, and Zoe for her first exam.

walking, shoes and school!

2011-05-29T08:16:00.004-05:00

Zoe started taking consecutive steps early last week. She's had great balance for awhile, but never was interested in walking. So, Tuesday she takes her first steps, and Wednesday she is literally walking all over the house. It is the darnedest thing I've ever seen. She is still wobbly, of course, but she gets incredibly mad when she falls.

We all know Zoe is a great eater, which translates into having a few healthy chubby rolls here and there. This includes her feet. She has several pair of super cute shoes that she can't wear because the little fat pad on the top of her foot prevents the shoe from going on. She has Robeez, which fit, except for around the ankle. So, she's pretty much gone barefoot her whole life. Which is fine, I've never really put shoes on my kids unless they need them. But, since Zoe is walking she now needs them. Cody and I took her to Stride Rite last night because they are the only brand I know that offers W and XW widths for kids. Zoe needs an XW and they had exactly one pair in the store. And they were sneakers. I was hoping for something more like a sandal since it's summer so I opted to come home and look around on the internet. So far I've only found one brand other than Stride Rite that offers XW in kids' shoes. I'm completely confused, because I know of more kids that have chubby feet than don't, so I'd expect a bigger variety! I was also hoping for something with a very flexible sole, and the shoes I've found so far that would fit her have the very hard sole. So we're going to have to figure something out... she isn't into having anything on her feet to begin with and I think she'd boycott walking if I put a really hard sole on her foot.

On Friday I met with the school district to discuss Rhys's schooling for next year. Until the age of three the state provides services through ECI (Early Childhood Intervention), with all services provided in your home. After their third birthday, the child is transferred to the school district and no longer receives ECI. A couple weeks ago we had Rhys's evaluation with the ISD. Friday we discussed their "findings" and finished the paperwork. I'm so very excited about this program! The teachers and staff are great, and I think it is going to be wonderful for Rhys. He will go M-F from 8:10 to 11:10 a.m. I asked for bus transportation to and from school (even though we only live a mile or two away) because (a) it will be much easier than me toting three kids up there every day, but most importantly (b) I think it will be an official start/finish to Rhys's school day. The various teachers each established many goals specific to Rhys, that they will work on throughout the year. He will be in a classroom setting with approximately 6-8 kids and they will do things such as music, circle time, work on personal hygiene (washing hands, etc.), snack time, and various other activities. Even though a lot of therapy is integrated in the daily routine, he also qualified for OT/PT 1x every other week, speech 2x a week and vision 2x a month. This is above and beyond the private therapy we are in the process of setting up for Rhys. All the teachers have told me they see a lot of potential for Rhys's development so again, Cody and I are very excited for him to get this opportunity.

finally updated!

2011-05-23T05:24:00.005-05:00

Okay, so we've been busy. You'd not think me sitting on the couch required much effort, but it does! Just kidding. If Zoe's pregnancy was all waiting around, relaxing (is there such a thing with a high risk pregnancy?) and staying off my feet, this one is completely opposite. Even with daily help I am still up and down all day long. Oddly enough this hasn't (yet!) made a difference with contractions, etc., but I can definitely feel it in my legs, feet and back this time around. Of course my, ahem, 2 pounds per week weight gain could also be contributing to that. We've got seven weeks left, and counting! And we're so excited to meet our new little guy.

I know it's usually the way things work, but I feel like this little man is getting the shaft. R&B of course had new everything since they were our first. By default, since Z was a girl she had nearly everything new as well, but this one is just getting hand-me-down everything. Not to mention he's going to eventually be sharing one of his sibling's room so I can keep a dedicated guest room for a while. So, other than a few to-be-personalized-once-we-have-a-name items we're just rolling with it and will probably have to stop to get newborn diapers on the way home from the hospital. :)

Both the kids have just gotten over the crud. Z I think has just had allergies, since hers was a clear, runny nose, with lots of sneezing, itchy eyes and occasional coughing. Poor Rhys ended up on breathing treatments and antibiotics for wheezing and a possible ear infection. Oh, and he threw up in the lobby of the doctor's office. It was awesome!

His transition from group swim lessons to private lessons was a bit rough at first. Even though it was the same activities and the same instructor he screamed for the entire first two sessions.

Now he gets upset when I first hand him over, but he quickly gets over it and enjoys himself. He's actually doing well attempting to float on his back, and he's monkey crawling with two hands! Which is a big deal for him since he previously only wanted to grab on with his left.

We really love his teacher. She is fantastic with him. Everyone at the swim club knows who Rhys is now, I think mostly because of the situation with his CP. But, it's kind of funny to see random staff who I have never met say "oh, yeah, that's Rhys".

Our wild child is oh so close to walking. She stands independently and will take a step or two, but as soon as she realizes what she's doing she either dives towards you or sits down. She keeps it interesting around here to be sure. She is a drama.queen!

She had her first sucker the other day and absolutely loved it. Of course there isn't much this little lady doesn't like. We are so thankful she is a good eater. I just hope our newest addition is half as good an eater as she is.

And because we are parents of the year, we forgot our camera at Zoe's first birthday. Instead of driving back home to get it, a friend offered to let us use theirs. We just got the disk, but I now can not find where Cody stashed it or uploaded the pictures. So, here are a few I could find. Z and her cousin Ian, who were born only a couple hours apart, shared a birthday party.

now we know

2011-05-01T10:49:00.000-05:00

Now we know to move the crayons to a higher shelf.

exhausted

2011-04-27T19:12:00.006-05:00

Our four doctor's visits in three days are finally over. And I'm exhausted! Rhys had an eye appointment on Monday, during his nap time. At check-in we were told they were running behind. When asked how much behind I was told 30 minutes. Which of course meant 30 minutes in addition to the time we normally wait past our scheduled appointment. So, one hour and forty-five minutes later, with a very cranky Rhys, we saw the doctor. Um, annoying! Had we not needed paperwork filled out for Rhys's transition to school I would have left. It was a fast, good visit though. Rhys's eyes are great and she thinks he got really lucky not having eye problems as a complication of prematurity. We think so, too! She didn't feel the need to dilate his eye, thank you!, since his farsightedness seemed to be going away at his previous visit. And it wasn't that bad to begin with. So, we'll go back in three years for another checkup. She also offered to check Zoe out for any eye problems, since I have a lazy eye that runs in my family. Zoe hasn't shown us anything that makes us believe she has eye problems, but I'd like to have her looked at just in case.

Yesterday I had my OB appointment, where I waited for nearly two hours as well. Cervix is good and closed, and we'll be doing steroid shots next week just in case. My glucose test came back normal, so I'm glad I won't have to worry over that. This morning Zoe had her one-year well baby visit. Baby girl is 95th percentile all the way around. She weighs about 26 pounds, which isn't much less than Rhys's +/- 28 pounds. And she was less than thrilled with her four shots. The girl has a set of lungs on her! I'm am thoroughly enjoying the age she is at. I'm loving watching her figure things out and explore her world. She's recently started waving bye and pointing the remote at the tv expecting the channel to change. She isn't quite ready to walk on her own, but she's doing great cruising and pushing toys/chairs around the house.

This afternoon Rhys had a neurologistappointment. We aren't concerned about anything, just want to make sure we're covering all our bases and not missing anything. We've decided to do a follow-up MRI on Rhys so we can have a baseline of sorts. Even though this doctor is in the same "system" (there is a huge group of all types of doctors that work in conjunction with the hospital - teaching, seeing private and hospital patients, doing research, etc.) he wasn't able to find (on short notice) the MRI Rhys had done when he was discharged from the NICU. But, he will get it and then we'll have a point of comparison. No one believes Rhys is having complications from his brain bleed other than the obvious, but damage to certain areas of the brain can result in things like potential seizures or cysts so we just want to stay informed. We're scheduling the MRI for 6 months from now. The brain quits changing for the most part after age three, except for growing of course, so this is a great time to do it! After the MRI we'll follow up again and discuss what was found. In the meantime, the neuro is very happy with our choice of physical medicine and rehabilitation doctors (the one who prescribed the baclofen), so I think we're moving in the right direction.

Monday I have an appointment with the perinatal doctor, with another OB appointment next Thursday (yes I am beyond tired of weekly OB visits!), and next Friday Rhys has his transition consultation with the school district. That will conclude our crazy two weeks of doctor's visits. And then maybe I'll again feel up to cleaning the house. Or maybe not.

oh, so busy!

2011-04-16T21:28:00.003-05:00

Where does our time go? We've had so much to do around here. Between all the doctor's appointments (mine and Rhys's follow-ups), transition from ECI (which happens when Rhys turns three), the new baby, and our various household projects, we barely have time to sleep.

I am now 24 weeks. Hallelujah! I was sad to get a call from the home health group last week - they wanted to set up my contraction monitor. Boo! I was hoping my OB had forgotten about that. It doesn't sound like a big deal, but monitoring for one hour, twice a day, is a pain.in.the.rump. It stresses me out. And sitting still for that long is nearly impossible with two small kids running around. So far I haven't felt any contractions, just irritability. At this point with Zoe I was having a few contractions here and there, so I am grateful for the decreased activity. I am also on my feet a lot more than I was with Zoe, which is a lot more than I technically should be. Even with help during the day I am up and down all day long. My belly seems like it's enormous, as evidenced by the stretch marks on my stomach! I am not at all vain, but suddenly discovering stretch marks in my third pregnancy, when previously I had none, is rather depressing.

Our week days are jam packed with therapy appointments, make-up ECI visits, my (now) weekly OB check-ups, well baby check-ups, ECI to ISD transition appointments, swim lessons, and every other thing we have to squeeze in. Rhys still gets his same weekly therapy from ECI, but he's also had several follow-ups regarding his CP. Speaking of CP, the bad reaction to the baclofen finally went away! He has an up-coming neuro visit, eye dr visit, he's going to be fitted for a new brace for his CP, he needs x-rays on his hips and we have the evaluation with the school district for his transition to regular school next fall. In addition to that, Zoe has her one-year well baby check-up, and baby boy has a scan at the perinatal doctor. This is all within the next two weeks. We've also recently switched Rhys from group swim lessons to private lessons. This is a one-on-one lesson with the instructor, instead of child-parent group lessons. It's easier on Cody because he doesn't have to rush home after work on Tuesday afternoons to make the lesson time and it's more beneficial to Rhys because it's all about him. So far he hasn't appreciated this change, but I'm hoping he starts liking it because he's really do great in the water lately! And all this would be completely impossible without my daytime help. The nanny has been here for four weeks now and I'm going to be sad to see her go when the new baby arrives.

And poor Cody, he's been really busy around here. I think he's a little stressed with all the stuff we'd like to get accomplished before the baby comes. He is trying really hard to get it all done, in addition to having primary duty with the kids to keep me from having to lift them and chase them around the house. In fact, he is at the grocery store as I type this at 9:30 at night! We were in the middle of a kitchen remodel when I found out I was pregnant, so between him being gone for four months during the summer and my now restricted activity, you can imagine it is taking significantly longer than what was intended. We also had some yard work that needed to be done, part of which was putting together the kids' playset. Hopefully that will be finished within the next couple of weeks so the kids can enjoy it while the weather isn't blazing hot out. I honestly haven't even started contemplating where the new baby is going to live, I guess we'll figure it out when he gets here. I'm so very thankful for a healthy, uneventful pregnancy so far, but man I am ready to be 100% again!

baby boy likes to move!

2011-04-07T21:49:00.002-05:00

I think our little guy has a trampoline is my tummy. I only thought Zoe moved a lot. Every nurse who checks his heartbeat walks away with a smile on her face because his constant movements prevent his heartbeat from being easily found.

On Saturday I will be 23 weeks, and to be honest, I have been freaking out a little lately. I have no reason to think anything is wrong, but my head keeps inventing things. I have not had any full blown contractions (yet), as I did by this point with Zoe, but I have had irritability. That may sound great, and it is!, but it makes me fear that I'm dilating with no warning. At least when I was having contractions I had some indicator of what was going on. Not that I am wishing for contractions mind you. Thankfully all was well at my checkup today - cervix is still hanging in there.

To date I've gained 22 pounds. Which is a record for me, in that this is my first pregnancy to not have my weight gain surpass my weeks of gestation. I gained 5 pounds in the last two weeks, which is a lot considering that is nearly 25% of my total gain in only two of my 22+ weeks. But it wasn't unexpected because I've been eating us out of house and home lately. I blame the baby! :) So three months left 'til delivery and so far so good. As with Zoe I will feel much more relaxed once I make it to 28 weeks.

too little too late MOD

2011-04-02T13:20:00.004-05:00

It was just announced that KV reduced the price of Makena from $1500 to $690 per dose. How helpful! According to this article (read it if you get a chance, there is a lot of new information in it I'd never seen, namely about KV's financial status), immediately following the announcement MOD severed ties with KV. Of course they needed to do it, but in my opinion they waited far too long. At the end of the article one compounding pharmacist states that he charges $7 per dose for the compounded version of 17p. It does mention that this is probably less than most other pharmacies would be able to charge since he supplies surrounding hospitals and makes large batches as a result. Still, it is an idea of how little this drug costs to make, and how much KV stands to gain.

Excerpt from the article linked above, concerning the MOD: Hours after K-V's announcement, the March of Dimes, which had accepted about $1 million in donations since 2006 from a K-V subsidiary and allowed it to use the charity's logo on its website, said it was severing its relationship with the drug maker. "The company's handling of the launch of Makena, and the initial list price, were highly unsatisfactory and unacceptable to the March of Dimes and the families we represent," the maternal and infant health charity said in a statement.

On MOD's website I found the following:

March of Dimes responds to Ther-Rx and April 1 letter from MOD to KV

Statement from March of Dimes regarding FDA announcement Really?! Now you're welcoming a lower price, MOD, despite not publicly denouncing KV's behavior. Quietly posting on FB and your website does not count as public.

Easter bunny

2011-04-01T20:52:00.003-05:00

Better luck next year.

17p and compounding pharmacies

2011-03-30T20:01:00.008-05:00

CBS ran a story this afternoon about Makena. I didn't actually see it (my aunt told me about it) but read the article online. You can see the online article here. Apparently the FDA released a statement announcing that it will continue to allow the compounding pharmacies to manufacture 17p "at this time". You can read the FDA's statement here. I'll take it!

To all of you who voiced your concern, way to go! Still want MOD to be held responsible and be forced to publicly acknowledge their link to this whole mess, but whatever. Win for preemie moms!

*edited to add: KV's stock price drops after FDA announcement.

amazed!

2011-03-28T19:02:00.002-05:00

Our little guy is constantly amazing us with what he comes up with. A few weeks ago his OT brought a scooter to the house, the type from elementary gym where you either sit or lay on it and use your hands to maneuver yourself, hoping Rhys would lay on his belly and push/pull himself around on it. Well, he was more interested in using it as an obstacle to climb over, than figuring out how to move. Yesterday he was laying on it and suddenly starting pushing himself around on a circle. Cody and I walked into the kitchen to eat dinner and here he comes! While on his stomach he followed us by pulling himself. It was really remarkable.

We've also been working for literally months trying to get Rhys to scribble with colors, but he's always more interested in tearing paper than drawing. He got a magnadoodle for Christmas so I hoped that would help, but he didn't really care for that either. So imagine my surprise when he recently started writing on the magnadoodle, knowing which way to hold the pen. Not only that, but he started erasing it! This may not seem like such a big deal, but for Rhys it is. Cognitively Rhys is much more advanced than what his communication/motor skills demonstrate, so it's very exciting for us to see him figure out how to do these seemingly simple things.

On a different note, I think we're seeing some of the negative side effects from Rhys's baclofen. We were very positive the first few weeks because we didn't see any of the decreased appetite, moodiness or sleepiness we were warned about. So we really thought we were in the clear. We increase the dose by one-half a pill per week, and though we aren't positive yet we're pretty sure that the most recent increase in his medicine has made him a total fuss bucket. I am talking extreme irritability for no reason whatsoever. I called his doctor to discuss it with her and we are now going to decrease his dose back to where it was prior to the bad behavior. If he goes back to "normal" we know it is the baclofen. If it doesn't change anything we know we are in trouble! No seriously, it will not be good if he stays this cranky so we are really hoping it is the baclofen because dealing with his behavior on a regular basis would be miserable for the whole household. Once the dose is decreased (and hopefully the screaming stops) we will then determine if the response from the medicine is adequate enough to help Rhys, or if we need to switch him to a different medicine.

Regardless of what happens with the baclofen we are requesting a behavior consult for Rhys via ECI. Why? Because Rhys has always had a certain level of whining and acting out (though nothing compared to what we've seen the last week or two) due to his frustration associated with the delayed motor/communication, and we've always struggled with a way to appropriately deal with it. It is very minor all things considered, but since Rhys doesn't learn skills at the same pace as his typical counterpart he still hangs on to this whining/throwing/screaming as a way of expressing himself. He is very opinionated despite not speaking clearly, and he'll definitely let you know what he likes and doesn't like. We've worried about the transition when he starts school next fall, simply because we don't want him whining the whole day when he has to do things he doesn't care to do. Hopefully this behavior consult will give me and Cody some instruction on how to respond correctly and not reinforce Rhys's bad behavior.

first dose of 17p

2011-03-24T20:39:00.002-05:00

Today I had my first 17p shot. The meds I received from the home health group are a compounded version, not Makena. I intended to ask my OB about it at my checkup today, but he was running behind so I saw another doctor in the practice. But I will ask about it when I see him next time. It was my understanding that Makena was available as of March 14. I'm really curious about all this, for it seems there is truth to the compounded version still being available despite the C&D letters. At least for now.

For what it's worth, my nurse visit is billed at $90 per the paperwork, so again, if you're having trouble with getting insurance approval/paying for Makena, this may be another option. I do not know if the 17p is available from my particular provider without the nursing service, but even if it isn't the $90 for the nurse + $40 for the 17p is still significantly cheaper than the list price of Makena. Anyway, just trying to pass along information for ways around the crazy price for those who may be having issues getting the drug.

In continued attempts to keep this in the news, I emailed two local news stations last week. One reporter responded immediately, stating she was already working on a story about KV Pharmaceuticals and asked if I'd be interested in doing an interview. Um, absolutely not! I so hate being center of attention like that, but I took one for the team. She came out the next morning and took some footage of us and the kids. Thankfully she didn't use much of me - I'm terrible on camera - but there were good shots of Rhys. The story turned out well, but it was only a story on KV with no mention of March of Dimes. So, I'm going to contact the other station a second time, as well as another one I didn't email before. I really think the MOD connection needs more attention and I'm honestly disappointed people aren't addressing it.

17p/insurance info

2011-03-22T19:15:00.003-05:00

I have been waiting to hear back from my OB's office regarding the 17p for my pregnancy. I know what my OB told me at my last visit, but his PA was waiting on official word from him before she put in the order for anything. He was out of town at the end of last week, so she called me first thing Monday morning to tell me we are doing exactly what we did last time, with the exception of the terb pump.

With Zoe, it was a one stop shop with a home health group. They provided my contraction monitor and monitoring service, the terb pump/med, the 17p and a weekly visit from an RN to give me the shot and look me over. My 17p never went through my prescription plan, it was included in the services from the home group group, who I am assuming has their own compounding pharmacy. It seems that will be the same this time around. Soon after I spoke to my OB office I received a call from the home health group verifying all my personal information. They were then going to forward all requests to my insurance to verify benefits.

Today (you still with me?) my insurance company called. All patients prescribed 17p are considered high risk and are assigned an RN who works the case. They check in periodically and are available to the patient for whatever assistance they may need. When I spoke to my insurance RN today (she incidentally is the same one who I had with Zoe) I asked her about the coverage given all the new developments with the drug. According to her, she was told last week that my insurance and the home health group are still in agreement in terms of coverage and all things will remain the same as it was previously. She did not tell me specifically that I was going to be receiving a compounded version, but that is what it sounded like to me. And if that is the case, I suppose there may be some truth to the claim regarding compounding pharmacies still being able to provide the drug if ordered by the doctor.

Anyway, just thought I'd share this information in case it could be beneficial to someone else. The home health route is more expensive because you pay for a weekly nurse visit and the drug, but I am pretty darn sure it would still be cheaper than $1,500 a pop to pay for a nurse visit and compounded 17p if this is in fact allowed. Had I only needed 17p I am unsure whether my OB was have ordered it from the home health group, because I know several of my friends got the drug via their prescription plan and then gave the shot to themselves. I'll post again once I get some clarification on things.

new statement from KV Pharmaceuticals

2011-03-19T19:40:00.009-05:00

Well, guys, maybe everyone's complaints and concerns are actually being heard. KV released a new statement today regarding the price of Makena. For those of you contributing to the noise, keep it up!!

*Edited to add:

activity from Ohio Senator Sherrod Brown

Has anyone seen/heard that compounding pharmacies can still make an FDA approved drug if it is deemed appropriate by the medical provider? Wonder if there is any truth to the claim. Sorry some of the references are taken out of context, didn't want to copy/paste the entire article, which is posted here.

The compounding pharmacies for now are striking a defiant pose. On March 14, the International Academy of Compounding Pharmacists issued a statement to patients and providers saying that, although many pharmacies had received a warning letter dated Feb. 17 from Ther-Rx that they could no longer compound an FDA-approved medication to which Ther-Rx had exclusive marketing rights, "In our estimation, the letter is nothing more than a ‘scare tactic.’ ... Pharmacists can legally compound FDA approved products when a prescriber determines that the compounded preparation is more clinically appropriate for an individual patient."

David G. Miller, R.Ph., the group’s chief executive, said in an e-mail that the answer to the question of whether 17P can legally be compounded, in light of an FDA-approved product with market exclusivity, was "clear and simple."

"If a prescriber determines that a compounded preparation of a medication is in the best clinical interest of his or her patient and discusses the available options with a pharmacist, there are no statutory or regulatory prohibitions on that professional decision," Mr. Miller said.

One criticism raised by Mr. Miller and others was that Makena had received FDA approval in part as a way to offer 17P with guaranteed consistency across the market. However, Ther-Rx’s parent company, KV Pharmaceutical Company, has recently faced legal trouble over active-ingredient inconsistencies and false labeling of its FDA-approved products.

Just last week, KV Pharmaceutical Company’s former chief executive pleaded guilty to breaching federal food and drug statutes by selling oversized morphine tablets.

Dr. Harman said he had no relevant financial disclosures.

more on March of Dimes

2011-03-17T15:35:00.006-05:00

It keeps getting better! A friend pointed out this article on MOD's website today. Pay special attention to the "Who pays for the treatment?" question and their response. It can be expensive. Really?! Three days ago you wrote a mildly worded letter to KV expressing concern over the price increase and now you are publishing a write-up encouraging women to ask their doctors about it even though "it's expensive"??

And though it is nothing new, the eligibility requirements for who could benefit from the drug make me angry. I had a premature delivery while carrying multiples, but my insurance company approved the drug for my second pregnancy even though according to these guidelines I wouldn't benefit. The drug is supposedly not effective when pregnant with more than one child, as I guess it is assumed that women carrying multiples go into premature labor more frequently and with less provocation than with a singleton. If my OB had gone by those guidelines he would have assumed my first delivery was a fluke and done nothing preventative with Zoe. I had contractions with Zoe from about 20 weeks on, while on 17P and a terb pump. I can not say how much either of the drugs contributed to helping me make it to 36 weeks, but I would not have been willing to chance it. My concern is that insurance companies who are willing to pay for the drug will now use these guidelines more strictly to determine whose treatment they'll cover, and many women will miss out.

I have been angry with MOD over this whole thing, but I am done with them now. Other than posting on their facebook page and website they've made no public announcement taking a stand against this issue, and now the publishing of this article (which to me condones KV's behavior) has pushed me over the edge.

birthday girl!

2011-03-16T19:49:00.003-05:00

Happy 1st birthday, Zoe! We love you baby girl!

March of Dimes and KV Pharmaceuticals

2011-03-15T12:37:00.014-05:00

A couple posts ago I linked to an article about the recent FDA regulation of the progesterone/17P drug. This regulation has taken away compounding rights from pharmacies and bestowed them to one, single company (KV Pharmaceuticals), who subsequently increased the price from $10-$20 to upwards of $1,500 per dose even though this drug is well past the R&D stage and has been used for years. Instead of costing $200-$400, patients/insurance companies are now faced with a cost of $30,000 to treat a full-term pregnancy. March of Dimes was mentioned in the article as a supporter of the FDA ruling. How convenient that March of Dimes receives hundreds of thousands of dollars from Ther-Rx, a KV subsidiary. I'm not saying I believe March of Dimes condones this behavior (see here for a letter written by MOD to KV), or even supported the FDA ruling with ill intent. But clearly they've aligned themselves with a company and a purpose without giving full consideration to all possible eventualities of that support.

Please take the time to read this blog post. This woman sums it up quite nicely and it's worth the read. In her post she provides several ways to contact and voice opposition to this shady deal. Please consider that even if you've never directly benefited from this drug, the price increase does concern you because your insurance companies and/or government will ultimately pick up the tab. Even worse is the possibility that thousands of premature births, that previously were preventable, will now not be because it is cost prohibitive.

I'm still unbelievably disgusted. Especially with March of Dimes's connection. I've not gotten word yet on whether my insurance company has approved the shots this time around. But either way the problem is much larger than just me.

*Edited to add* that KV has created a patient assistance program that provides the drug at discounted or no cost for those who qualify. You can see their announcement here. While this is a step in the right direction, it still excludes many women. Who is crazy enough to think that any household making a penny more than $100k a year can afford to drop $30k on a single drug for pregnancy? I've also looked a bit more into the orphan drug status. This is a great article if you're interested in reading. I know there have been a lot of them in this post.

Thursday recap

2011-03-10T21:28:00.005-06:00

Baby boy looked good on the ultrasound. I still get excited saying baby boy!

Cervix is still closed. I'm getting to the point I'm starting to freak out about everything so we went ahead and checked it.

OB wasn't yet aware the FDA-approved regulation of progesterone has caused a potential price spike of 75x - 100x per shot.

OB told me the FDA also recently banned the use of the terbutaline pump for preterm labor due to potential maternal heart problems and/or death. Nice!

No immediate alternative for the terbutaline, but progesterone is still planned to begin in two weeks (assuming no insurance issues).

We found a nanny! We met and had dinner with her and her husband tonight. She starts week after next.

anyone else seen this...?

2011-03-09T20:26:00.006-06:00

I was browsing the news today and came across this article.

http://www.msnbc.msn.com/id/41994697/ns/health-pregnancy/

All I can say is wow! How ridiculous. In general I am always disturbed at the prices of medical procedures, drugs, etc. Luckily we have good insurance, but I still check EOBs to see the breakdown of how things are billed and paid. This drug is the progesterone/17P you hear pregnant women speak of. I had it weekly with Zoe from 20 weeks on. My insurance covered it then, so I'm curious to see how they'll respond now that the price has increased 75x. I'd like to think if they covered it before, and it is the only option, they can't very well refuse it only because of the price. But we'll find out soon because I am due to start it the week after next. I'm really disgusted and disturbed by this company and that there isn't a law against what they're doing.

it's a....

2011-03-07T11:06:00.008-06:00

Zoe is movin' and groovin'! She is so stinking funny, always keeping us entertained. She is now walking with assistance, pushing anything she can get to move. There is now no hesitation when transitioning from standing to the floor, and she is also getting very brave when letting go from the surface she's holding onto to grab for something else. She's especially funny when she sticks her rear in the air, straightens her legs like she is going to stand, but can't figure out exactly what it is she wants to do.

And, finally! My mom instinct was right in regards to gender. With my first pregnancy we were so concerned about multiples that the gender thing didn't really figure much into the equation early on. I had lots of boy dreams, but it never occurred to me to imagine they'd both be boys. With Zoe I just knew she was a boy, but we were blessed with a little princess. From the day I found out I was pregnant this time I was completely certain of what this baby was. Even when my OB told us it looked like a girl at 15 weeks, I never doubted that we were expecting a little boy. And today there was no doubt. Our newest addition will be the youngest brother in our family. And we are so excited!

Not only did we find out we're expecting a new little guy, he looked great and I wont need to go back to the peri for 8 weeks. I went once a month with Zoe, most likely because of her kidney issue (sugar intake on my part), but I'll take once every two months. Though it was nice to get a full anatomy scan once a month I welcome the less frequent doctor's appointments.

it's been a while

2011-03-01T08:38:00.004-06:00

Wow, I didn't realize it had been so long since I last posted. We've been busy around here doing things to the house and yard. Things that were planned prior to our little surprise and need to be completed before the baby gets here. Cody has been working really hard to get as much done as possible, and of course I am unable to contribute as much as I normally would so he's really picked up my slack.

Zoe is pulling up on everything and cruising along the furniture. She is an extremely busy little body. She's also starting to walk behind things which we're excited about, because for so long she kept her feet firmly planted to the floor and refused to lift them. Baby proof has an entirely different meaning in this house now, when every single day she discovers something I never would have thought she could get to. I can already tell we're going to have to establish a timeout corner with her name on it. She is a complete mess! My favorite thing she does these days is grab my finger to push the buttons on the her toys.

Our little man is doing well. He is very into crawling under and between things. Most times he tries to squeeze himself through an opening that is about half as wide as he is. He loves obstacles so we've been looking for something that would give him things to crawl through and over. I found this tunnel for cheap the other day at Target and he loves it. Just prior to snapping this picture he had crawled through to the end, turned onto his back, and was just lying there watching tv. We're continuing with the baclofen and we're really seeing a nice response. So far I can't say I've noticed any of the undesirable side effects, for which I'm thankful. I just hope they don't spring up on us at a later date. His hair is just like this. I promise. I couldn't make it do that on purpose if I tried. He desperately needs a haircut, but I'm dreading it because of the reaction we had last time so I've been putting it off.

In new baby news, everything with the polyp seems to be fine so far. I've been for several visits the last two weeks and the polyp and baby both look fine. No bleeding, save for very minor spotting, since it was treated. We'll continue to keep an eye on things and address anything as it may come. I go for my major anatomy scan next week with the peri and I'm very excited to find out what we're having. My OB tried the last two weeks to determine gender with no luck.

Cody called me yesterday morning after he got work, telling me they were asking him to go to Africa. And he'd be leaving in two days. At first I thought he was joking, but turns out he wasn't. We couldn't figure out a help situation on such short notice, I'm getting really close to lock down, and wasn't sure I'd feel comfortable toting and lifting two active kids by myself for a week and a half so he decided not to go. I really hate restricted activity. I am a very independent person for the most part and not being able to do what I want is driving me mad! We've already begun the search for a temporary nanny, so hopefully we'll be able to find someone good without too much trouble.

my valentines

2011-02-14T20:13:00.003-06:00

One of my darling valentines. If you look closely you can see the other one in the background. Rhys wasn't cooperating with the camera so that's about as good as I could get. They crack me up when they play with each other. Zoe has recently started climbing on top of Rhys, which is only fair I guess since he's been doing the same to her for weeks.

***Disclaimer*** If you continue reading you may find yourself in the middle of TMI. Just so you know.

Last week I had my cerclage. My OB told Cody that I bled a lot during the procedure so I should expect a fair amount of bleeding and clotting. First couple of days weren't so bad, but into Friday afternoon I started bleeding a lot (think heaviest day of your period) and had some pretty sizable clots. I wasn't overly concerned at first since my OB specifically mentioned this could happen, but then it just wouldn't stop. I stayed off my feet all day Saturday, but that didn't help. As afternoon came I really started to panic. I wasn't cramping or hurting, but it was a lot of blood. I called the after hours line and had the doctor on call paged. Luckily it was a doctor in my OB's practice and not a random. She told me bleeding up to a week afterwards was to be expected, especially with a repeat cerclage, and since I wasn't cramping or contracting it sounded fine, but if the clots were that big and I was worried I should go to such and such 24 hour clinic to have them take a look.

Even though the clinic was 35+ minutes away (there aren't any 24 hour clinics around us) I decided to go. By this time it was nearly 10 p.m. so I quickly got dressed and called the clinic to make sure they took my insurance. It may sound ridiculous that I was thinking about insurance, but if they didn't contract with my insurance it would have been considered out-of-network and I'd have to pay everything out of pocket, with nothing going towards my deductible. Sadly, the lady who answered my call didn't know diddly about what insurances they accepted so I decided just to go to the regular ER. But instead of driving to the hospital my OB belongs to, which is 30 minutes away, I opted for the one 6 miles from my house.

Once at the ER I explained my situation to the front desk and the lady quickly jumped on the phone to call the charge nurse in L&D to ask if she should just send me upstairs, since in her mind a cerclage indicated a high risk pregnancy. The charge nurse said no since my OB didn't belong to that particular hospital. Fine, whatever. But then I was (literally) told I should probably go to my OB's hospital next time. Seriously?! I'm a high risk OB patient who is currently 15 weeks pregnant and just explained I'm bleeding and clotting like crazy and you're really going to tell me I didn't choose the right facility? Once in triage the nurse checked my blood pressure and the baby's heart beat, which were both fine, and told me the on call doctor could look at the cerclage stitch to make sure all was well but he wouldn't manipulate it in any way. I was reassured the baby was fine and didn't particularly think digging around down there would be helpful to the situation so I opted to go home and see my OB Monday morning.

I got up early this morning and was at the office before they opened. During an uncomfortable pelvic exam my OB said the stitch was fine, but a polyp had formed. It was on my cervix and that was the cause of all my bleeding. There are several reasons cervical polyps can form, two of which are inflammation of the cervix and clogged cervical blood vessels. He put some medicine on it, which seems to be working thank goodness and the baby looked fine on the ultrasound. I go back Thursday to have him check me again. I'm really hoping this is a freak thing and not a sign of things to come. Just one more thing to add to my catalog of random pregnancy experiences!

updates

2011-02-11T11:22:00.003-06:00

Wednesday I had my cerclage put in. Overall, the facility was much less formal than the place I used previously, which made for a much nicer visit. With Zoe I had an IV put in and then had to wait for an entire bag of fluid to drip before I went in for the cerclage. I hate needles and I was anxious anyway, so the entire thing was needlessly long in my opinion. I was expecting a similar experience this time, but man it was so much better! The anesthesiologist put in a tiny IV, painlessly I might add, and we were ready to go. I was immediately brought into the procedure room, they hooked up the "Michael Jackson" drug (PC or not, that is what they called it) and I was out. I woke up completely dressed, sitting in a wheel chair in a small conference room. Cody told me I'd been awake from the moment they wheeled me in, however I wasn't aware of anything until about five minutes before we left. So it seems I was asking questions and making conversation for 10-15 minutes that I don't remember. Actually, Cody told me the anesthesiologist recognized our last name and asked him if we knew so-and-so (who turned out to be Cody's uncle), and I did vaguely remember that being asked, but not until he brought it up. Completely unique experience! So, the cerclage is over and done with. So far so good, but I'll feel better after my next ultrasound to make sure the baby is still doing well.

Rhys has been on baclofen since Monday and holy crow I didn't expect there to be such a good response. This medicine affects the nervous system so it is gradually increased (and also decreased if/when the time comes) as to not shock the body. This also allows for you to determine the best dosage without giving more medication than necessary. If at any time you feel that you've reached the desired result you can hold the medication at that level. We started with half a 10mg pill before bed time and the effects were immediately evident the next morning. The tone in his legs is significantly reduced, and during yesterday's PT session he was standing very nicely in his gait trainer. The dose for Rhys is increased by one-half a pill every week, over the course of eleven weeks, for a max of six pills per day. I am very encouraged by the response, and on so small a dose. Hopefully this will make it easier and less painful for Rhys to break out of the tone pattern and use the muscles as they're meant to be used.

new doctor(s) for Rhys

2011-02-08T05:07:00.010-06:00

For the last several months Cody and I have been discussing the need for a more proactive approach to Rhys's CP. Our therapists are great for the most part, and we've seen a lot of progress from Rhys in the last 16+ months. But we still don't have any one person to call the shots, so to speak, in terms of managing Rhys's care. Doctors and therapists alike have commented on how much potential (for lack of a better word) he has, we just need to tap into it. The problem is we know little to nothing in terms of his CP. I mean we know his abilities and disabilities, but how to address everything not so much.

I've long been frustrated with the fact that everyone knows he has CP, but no one wants to discuss it. Of course they will if we bring it up, but I want someone who will look at him and say that's not good enough, we need to... We're increasingly becoming more knowledgeable about things (I've gotten a lot of good info from other blogs), but no matter how much we try to learn the information just isn't readily available. I hate to say it, but several times I've felt that since doctors don't expect much out of micro-preemies they are happy with anything above baseline. And, that's just not going to work for me!

So, in an effort to get as much information as possible we've scheduled with a couple new doctors to check things out. Nothing is wrong, we just want to make sure we've got everything covered. We're not impatient - honestly those of you who know something about this type of thing know there is little sense in being impatient, and that is alot coming from me as I'm the most impatient person I know - it is that there are limited windows of opportunity when these kids are young and we don't want to miss anything.

We have an appointment scheduled with a neurologist in April. I hate that was the first available opening, but hopefully they'll have a cancellation before then. If not, it isn't that critical. I am also thinking of getting a pediatric orthopedic doctor on board just to make sure everything is/stays in alignment, but I'm not sure that is necessary right this second. Lastly, I scheduled with a pediatric physical medicine and rehabilitation doctor. Lucky us, she had an opening yesterday afternoon so I bundled Rhys up and met Cody at their office.

First impression of the office, small and quiet with only one patient in the waiting room. Second impression, we didn't have to wait long after our scheduled appointment time to see the doctor. Third impression, the doctor was very friendly with no scrubs, stethoscope or lab coat and didn't look like she was in a hurry to get out of the room. In fact, we chatted with her for more than forty-five minutes.

In summary, she thinks Rhys looks great for a 23 week preemie and believes he has a lot going for him. He has good range of movement, good head control and a spunky personality that she witnessed first hand. On the flip side he has a somewhat weak torso and tone in his legs that is clearly preventing him from using them properly. To address the leg issue we are starting Rhys on baclofen, which is an overall muscle relaxant. Baclofen works by blocking nerve activity in the part of the brain that controls the contraction and relaxation of the muscles. Hopefully this will allow him to loosen up enough to engage and strengthen his muscles in the proper pattern. And if we can loosen up the leg muscles I'm hoping that will make Rhys be more comfortable in the sitting position. There are a few common side effects possible with this medication. They are minor - sleepiness, irritability, nausea/loss of appetite - but as you can see aren't exactly negotiable so we're hoping he doesn't get any of them or we'll have to switch meds.

The ultimate goal is to identify what exactly needs to be treated and how best to do that. The addition of these new specialities should take care of that and keep us on top of things.

Off to the races!

2011-02-03T20:35:00.002-06:00

It seems they are becoming friends :)

table for five

2011-02-02T15:23:00.004-06:00

Yes! I am indeed pregnant. It was unexpected and unplanned, but definitely not unwanted. If you think you're shocked, you can not possibly imagine our reaction when we found out. The discovery came just before Christmas. Nice gift, wouldn't you say? Yes, I know where babies come from. But since we needed the help of an RE for the first two, and nothing changed after my pregnancy with R&B (however brief), I never suspected anything would be different after I had Zoe. Our issues were not so severe as far as infertility goes and my RE said it wasn't impossible to occur on its own, just unlikely. So it must have been something about recently giving birth, quitting nursing and just a good ole' fluke that allowed this to happen. We should start playing the lottery. Seriously.

I am nearly 14 weeks, and will be having a cerclage put in next week. I am hoping that goes as well as it did with Zoe, but I am still a bucket of worry. With each pregnancy I learn new things and that kind of knowledge doesn't do me any favors. My mind constantly spins and analyzes. I hate the never ending worry and concern that comes with being pregnant, and I'm not even talking about the potential of preterm labor. Oh to be one of the naive ones who take for granted everything will turn out perfectly. Aside from complete exhaustion I have actually felt great. But the fatigue has finally started to fade and I can now make it through the day without fearing I will fall asleep while my kids are roaming the house.

Our newest addition is due in early August, but we'll do everything precautionary as we did with Zoe to make sure (s)he stays cooking as long as possible. Delivery goal is early July, just before Rhys's birthday. Poor kid, I hate that he's going to have to share his day but it is what it is. Our "sweet" baby is below. The u/s tech at my peri's office gets a little carried away with the sweetness of things. :)

We're very excited about our new little guy or gal, even though we'll be the family circus with three children under three. We've always known we wanted at least one more baby, we just never thought to have all the kids so close together. I know someone is laughing at us and all our plans. You'd think I'd have learned by now that we don't have the final say.

ready, or not

2011-02-01T21:01:00.002-06:00

nutrition

2011-01-29T18:45:00.003-06:00

Today Rhys's nutritionist came for her every-other-month visit. She's actually been helping us more with Zoe lately by giving us food ideas/timing, because while Rhys's ability to eat has increased his willingness has not. So, it's a waiting game with him and she's mainly tracking his weight to make sure he's staying on target. We can weigh and measure Rhys, but we don't really know what his target is to stay on his curve. Just a couple months back she pointed out he had not grown at all, nor gained any weight, in two months. At that point we had to start supplementing with a calorie additive and today he was back to his normal growth curve. He's 26lb 12oz (~50%) and is 34.25" tall (short side of the scale). We aren't worried about him being plump and chubby, because to be honest that's not his body type. We're just trying to make sure we keep him growing as much as is in our control because kids who don't stand and/or walk don't typically grown as well as those who do. Something to do with weight bearing and the bones and some other stuff I can't accurately explain. Anyway, eating has always been a huge concern with Rhys, and probably will continue to be for quite some time. Oh for the day he wants pizza, or a hamburger or holy cow a bag of M&Ms.

Zoe is 28" tall (~50%) and 22lb 10oz (ahem, 90%). She's continued to gain since beginning to crawl (which she incidentally will do on arms and knees about half the time now) but not at quite the same rate. She loves cheese, toast, cereal bars and surprisingly eats meat just as well as anything else. She's still trying to figure out how to pull herself up to stand, but she's finally making it to her knees easily so getting the feet beneath her isn't far off. I love watching her on the magna doodle and how she only wants to write with her left hand.

Have I mentioned that I hate Blogger? More times than not all my text does random things and has stupid formatting quirks. My favorite? When you insert a line separating paragraphs only to publish the post and see no space! Tonight was a first for me, I inserted a picture and it only allowed my existing text to be centered. Look back through all my posts and not a single stinking post is centered. Normally I'd retype it because it bothers me that much, but tonight I'm too lazy. Yes, I'm a little anal that way. Oh and spell check isn't working either tonight so please excuse any misspelled words.

teeth!

2011-01-21T13:14:00.007-06:00

It seems as though I was wrong about Zoe's teeth. No sooner had I posted she had nothing about to pop through and here comes tooth number one! The bottom left tooth is in, with the right one on its way. We'd been checking her gums frequently, but this one snuck up on us. She had hardly any signs at all. A diaper rash (our first ever by the way) that had me suspecting, but Rhys had such a h.o.r.r.i.b.l.e experience with his first two teeth I guess I was looking for something more pronounced. So, the first tooth with no problems, but the second tooth is making her a bear. She's rather clingy and fussy (though I think part of that is just her age), she had a low grade temp this morning and threw up in her crib at midnight last night. Now that is what I was expecting to accompany the teeth, though it is still no where close to Rhys's ordeal.

And, Zoe isn't the only one with new teeth. Rhys is getting his two year molars. Holy moly that kid can be a grump. And speaking of teeth, Rhys's got stained from his antibiotics a few months ago. I'm pretty upset his teeth are no longer pearly white, but the staining has faded somewhat already so I'm hoping it continues.

Rhys and Zoe

2011-01-10T13:36:00.004-06:00

Rhys...

Will be two-and-a-half years old next week!

Finally received his equipment! On December 31, with literally only hours to spare, it was delivered by the MIA sales rep and a service technician. Everything was perfect, except we still don't have the tray for his chair. A template was drawn to cut it to size, and the sales rep promised to bring it by last Tuesday, but surprise surprise we never saw or heard from her. I wrote a letter to mail to the company detailing our horrible experience and had decided against sending it, but this changed my mind. As soon as the tray is in our possession and it is processed through insurance, that bad boy is going into the mail with carbon copies to as many executives as I can find addresses for.

Is still army crawling and getting into absolutely everything. I chase him all day long. We recently converted our office into a playroom (I'll post pics later), so that is a baby prison of sorts. It also gets ~~all~~ most of the toys out of our living room. Score!

Seems to be gaining weight. I think he may be 27 pounds finally. I say think because I typically put him on the scale right before his bath, so that isn't the most accurate time for a weight check. He is still beyond stubborn with eating, but his ability to eat is better. That is not to be confused with his willingness to eat.

Seems to be gaining more movement/use in his legs. I think he actually has more range of movement than he uses on a daily basis but I occasionally see glimpses of said movement and get really excited about it.

Has had a twin size bed for a couple months now. One long side is against a wall, with the other "open" side having bed rail. They unfortunately do not make rails that I can find that extend the entire length of the bed. I try to block those gaps as best I can, but a couple times now I have found Rhys wedged between one of the gaps, very close to toppling out of bed and on his head. I believe it is intentional and am worried he's going to succeed one of these days and hurt himself!

Zoe...

Will be 10 months old next week!

Started clapping and pulling herself into a sitting position on Christmas day.

Shakes her head "no" all the time, though she doesn't understand what "no" is.

Is army crawling! Just like Rhys. She doesn't quite understand crawling on hands and knees, but she is close to figuring it out.

Is trying to pull herself up to a standing position. But again, she doesn't quite get the leg part of it. But she's trying!

Has been feeding herself bottles for the last few weeks. We have to prop her on the Boppy because she can't lift the full bottle while in a sitting position, but she's hand's free feeding for the most part.

Is still a great eater, though she is increasingly wanting to do it all herself instead of having us spoon feed her. I have made nearly all Zoe's baby food from day one, so we've more or less increased the texture of that food until it is bite sized pieces for her to grab herself. It is more of a challenge to come up with healthy "finger foods" for a baby her age than I thought it would be.

Is very good at independent play and is using many toys appropriately. I've said it before, but we are constantly amazed at how a child's learning process works. Rhys does everything so out of order that we've never had "average" in this house.

Thinks screaming (and I mean screaming!) is the way to get what she wants. Despite having used basic signs with her for months, she doesn't yet use any of them in return. Except for maybe milk, I think she does use that one sometimes.

Still has no teeth and none that I can see are about to pop through.

Christmas pictures

2010-12-26T17:29:00.004-06:00

My mother, brother, us and the kids.

Rhys and Zoe playing at my cousin's house on Christmas Eve.

Rhys is sitting in his new Special Tomato chair, and was anxious to get

onto the ground to wreck havoc with the toys.

My mother and Zoe.

Me and my brother.

My silly boy and his Nilla wafers.

visit with Santa

2010-12-17T20:01:00.013-06:00

Cody's office had a Christmas party for the kids last week. It was both Rhys's and Zoe's first introduction to Santa. We didn't get Santa pics with Rhys last year because (a) I was pregnant and supposed to take it easy and (b) we were trying to keep Rhys away from crowds and germs.

Rhys did not crack a single smile. He was seriously trying to figure out just who the heck the guy in red was.

Zoe just about had a meltdown. We were able to get a few pics before her bottom lip started to pucker, and someone quickly snatched her from Santa's lap before she could start crying.

They were both very well behaved the entire time. Of course they were held most of the time as they got passed around to all the co-workers, who hadn't seen either of them since Zoe was a couple weeks old.

The best part for the kids was that Santa came armed with a bag full of gifts. It was really cute watching the anticipation of older kids as they unwrapped their presents.

Our kids were more interested in the paper. Especially Zoe, who currently tries to eat everything her fingers touch. And she has to touch everything. See her pointer finger?

Ah, my little man looks so grown up! It is hard for me to see it day to day, but when I see pictures of either of my kids I realize just how quickly they grow.

my little peanut

2010-12-11T21:20:00.002-06:00

The nutritionist came today to visit Rhys, and she checked Zoe out too! Rhys's weight is back up, as is his height. He occasionally has periods where we don't get enough calories in him for one reason or another, and therefore he doesn't grow. Most recently Rhys became (very) mobile, was fighting his illness for several weeks, and as he grows his calorie requirements increase but his food intake stays the same. Our cycle is this: we have a visit from the nutritionist, she points out his lack of gain/growth, we put forth another renewed effort to tweak his eating, he starts gaining/growing again and makes up for the previous growth he "missed". Our efforts are constantly evolving based on Rhys's quirks. It only gets better as he gets older, and will continue to do so as we can start reasoning with him, however it is slow going like everything else. Cody and I are both well aware it all happens when Rhys decides that is what he wants. So all this to say Rhys is back to his ~25% percentile for height and weight.

My little peanut, on the other hand, is a ~~plump~~ healthy little cherub. She is still 50th percentile for height, but has moved right on up to 90th percentile for weight. :) It really is nice having a child that enjoys food so much. The nutritionist told us since she is eating so well, is so enthusiastic about it, and is self-feeding snacks, we should start the transition to more table foods. This means things like diced fruit and veggies, Cheerios and Kix cereals, and increasingly more textured baby food. I still don't have this with Rhys so this is actually fun for me! And sort of daunting knowing you are shaping your child's appetite and eating habits, for possibly the rest of their life.

more equipment

2010-12-09T22:34:00.002-06:00

In addition to the chair and gait trainer Rhys has on order I was able to find him a stander on eBay for pennies! A stander was on the wish list, but it was more important to get the other equipment first. And since we didn't wish to bombard the insurance company with all requests at once (there is a high probability they would not have approved additional major purchases all in one whack) we put the stander on hold for a bit. I've been scouring eBay for various equipment that may work for Rhys, and recently came across a fantastic deal on a demo stander that is in excellent, like new condition. We paid $375 for something that would cost more than $2600 new. The mark-up on medical equipment is truly obscene. I don't know how these people sleep at night. Anyway, I am super excited to get this in for him! He loves to stand up, but it is difficult to hold him in the proper position for any length of time. This will allow him to work on muscle conditioning, but more importantly it will give him another opportunity for "normal" interaction. I'm still angry we didn't think to get this a year ago, but I guess we were waiting on someone to tell us what we needed. Which isn't like me at all, I am normally three steps ahead of the game, so I don't know where my head was. But, it's on its way now, and I think it will do wonders for Rhys.

ordered!

2010-12-06T21:35:00.003-06:00

Rhys's equipment has now officially been ordered! Including a "rush" on the order and overnight delivery to get it here by the end of the year. Whew! Only one more obstacle left... delivery to us! A rush order typically takes approximately two weeks to manufacture instead of the normal three-four, so that puts it somewhere at the middle of the month. The items will be shipped to the med supply company's distribution facility, where it will then be delivered to us. I spoke with the supervisor today and voiced my concerns about the timing being so close to Christmas and he made me a bit more comfortable. He is closely monitoring everything and offered to keep me posted on the status. No worries if he doesn't, I'll just given him (another) call.

approved!

2010-12-02T23:27:00.002-06:00

It isn't that I don't trust the medical supply company, but I don't trust them. So, I called the insurance company yesterday to make sure all the necessary paperwork had, in fact, been submitted and that they were in the process of reviewing everything. Our insurance has been great about paying/approving everything to date but I was still a little surprised to find out that they were in the final review process and expecting a final determination yesterday afternoon.

I called back today to get their answer and found out we got a partial approval on Rhys's equipment. Apparently some sort of optional tire variation was requested for Rhys's chair and that did not get approved since the chair obviously comes with wheels/tires. To the best of my understanding they deem it unnecessary since it is a duplicate item and is already included on the "base unit". Whatever. I wasn't aware a different wheel had been ordered and I don't care to have it hold up the process. I should be perfectly happy with the original tires thankyouverymuch! Unless of course there has been a disconnect in communication along the way. Which wouldn't surprise me. According to the insurance rep everything else got approved though.

I then called the med supply company to request that they call the insurance company to gain verbal approval so we can keep everything moving instead of waiting on the formal approval letter from the insurance company. You follow? I think these people are so tired of my daily calls that they are just as anxious to get my order fulfilled as I am.

Why do I always feel like I have to babysit people to make sure they are doing their job properly? Does no one have a good work ethic anymore? It's a shame helpful and willing employees are the exception and not the rule these days. I know this type of behavior wouldn't fly in my previous line of work. I'd have been out of a job!

and, he's off!

2010-11-29T21:19:00.004-06:00

Rhys is all over the place! He's down the halls, checking out the laundry room, sliding through the bathrooms, playing in his bedroom and most recently he's into the media cabinet.

The cabinet is new and he quickly discovered the doors slide open and he thinks the little niche is perfectly sized for him to crawl into. You can also see his handy work tearing up the foam mat. I've never had to worry about it before, but I guess it's time to baby proof the house!

Zoe is oh so close to wanting to move on all fours. She is leaning waaaay over to reach things while sitting and she slides her legs around and can almost tuck them underneath her. She is also fascinated with the couch and side of the crib so I don't think it will be much longer before she tries to figure out how to pull herself up. When on all fours she rocks back and forth like she's ready to go, but she doesn't really get on all fours yet unless I put her in that position. I can not believe she is already eight and a half months old!

Today I had my yearly checkup with the OB. I'd been putting it off for months for one reason or another and finally made myself go. The topic of the day was future pregnancies. I asked if he had any reason to believe subsequent pregnancies would progressively get worse. We all agree my pregnancy with Zoe went as well as we could have hoped for, but I still had random contractions from about 20 weeks on. My fear has been that my next pregnancy would become worse, and holy moly if I got pregnant after that it would be even worse still. My OB didn't think that was the case. He even thinks the next pregnancy would go better than Zoe's. Not sure why he thinks that though, guess I should have asked, but I can only assume it is because he now knows what my classical incision scar looks like and knows we were successful with the precautions we took with Zoe. He wants to do a hysteroscopy to check out the interior of my uterus though. He doesn't suspect anything, just thinks it is worth checking out.

Now, this doesn't mean we are going to have another baby right now, but God willing we will one of these days! Probably sooner rather than later. Actually, if I didn't have my issues I would do it right now in a heartbeat, but we have more to consider than just another bambino. To be honest, if the stork delivered babies I think I'd be in danger of wanting half a dozen. No joke. They are a lot of work, but are worth every minute of it. And even though people keep trying to tell me I'll change my mind once I have another, I think they are wrong because I just know.

news about Rhys's equipment

2010-11-23T21:15:00.002-06:00

After much back and forth between me and the med supply company we've finally seen some action. I just gave up on the sales rep since we didn't have time to wait for her to decide to do her job. For the last week I've been working with the PT, high risk doctor, and med supply company to provide the necessary documentation to get Rhys's equipment ordered. If you haven't gone through this process before it is a royal pain.in.the.butt! There has been a lot of confusion, a lot of duplicate document requests to the doctor and PT, as well as just plain ole' miscommunication.

I spoke with the doctor yesterday, trying to give her some direction as to what the paper work needed to say. Of course I have no idea, I'm just going based on what I understood from the med supply company. Never mind the sales rep should be doing this! So after that I'd had enough and called the sales rep's supervisor to get him in the loop. I left him a message, never heard back, but gave him the benefit of the doubt since it is a holiday week.

Today I called my contact to check on the status, only to find out he was on vacation and they were waiting on the MIA sales rep to fix some such something in the computer before they could proceed. I totally flipped out on the assistant! Ten minutes later I had a call from the supervisor. He was very apologetic, was a quick study and tied up loose ends for me today. We should now be ready to submit to insurance for pre-certification tomorrow. They've already verified benefits, but now they have to provide the necessary documentation for insurance to approve the purchase. Once that is done the equipment order will be expedited by the supervisor and we should get it prior to the end of the year. I'm glad we were able to get everything pushed through, but at the same time I find it ridiculous I had to hound so many people to get the job done. I believe the supervisor was embarrassed enough that he will do anything in his power to get this done by Dec 30, but I'll feel better once insurance grants approval and everything is ordered.

this and that

2010-11-19T21:32:00.006-06:00

Lots going on in our household lately. Here's a recap.

Cody just returned from Africa after being gone three of the last four and a half months. Can you say single mother of two desperately needed some down time? Much thanks to all you who called in to check on us or offered help while Cody was gone. Coincidentally, Cody was in a different locale in Africa last summer for quite some time too.

Zoe is still not interested in crawling. She is sitting extremely well though and can keep her balance while leaning over to grab things so I'm hoping she soon starts exploring the world around her.

Rhys on the other hand has discovered that he can leave the confines of the living room rug. He quite frequently heads into the kitchen or down the hall into the bathroom or his bedroom. He's pretty quick for inching along.

Baby girl still loves to eat. Every time I give her food I have to remind myself that she isn't Rhys. I am continually amazed at how things are supposed to work.

Rhys's AFO shoes came in. I will get you a picture soon. Well, the shoes themselves look just like the picture I posted previously, but on his feet they look like cinder blocks. They fit well though and aren't terribly heavy. But, he still tends to scissor his legs when he steps and the shoes just compound that problem. I am hoping once we get the gait trainer in he will have better lucky with walking.

Which brings me to the equipment being ordered, or not being ordered as the case was. I am a very unhappy customer in regards to our "sales specialist". Perhaps she is a specialist in dragging her feet and not doing her job. I have called multiple times and left messages in the last eight days, but have received nary a call back. Unacceptable! I contacted the company myself, instead of waiting on her, to get the ball rolling. We need Rhys's equipment a.s.a.p. because (a) he just plain needs it, but (b) we need to have it processed through insurance before the end of the year. The company is working with us trying to get things moving, but it is taking several precious days to gather the information the sales rep already had but never submitted. She is going to have one serious compliant lodged when this is all said and done.

We are adding OT back to Rhys's therapy schedule. For some reason I had a brain freeze and agreed to remove OT from ECI services when the SP started. OT worked on both speech/eating and occupational therapy, so to avoid crossover of the eating/speech component she stopped coming. Duh! Anyway, she is starting up again and will be working on fine motor skills with Rhys. So this will make vision 2x a month, OT 2x a month, PT 4x a month, SP 4x a month. Oh, plus weekly swim. Rhys's little calendar is on power book these days.

We have been using calorie additives for Rhys for several weeks now. When he started moving around his weight plummeted. Well, that and he got sick so his appetite decreased as well. We've been using one powder and one liquid additive with great success. We aren't overly concerned about him packing on pounds, we just need to make sure he is getting enough calories to grow (i.e. height) properly. We are also having some success with Rhys eating some of Zoe's yummy homemade baby food. I'm trying to work towards introducing more food variety before I increase the texture as the SP wants to do. The SP is very pleased with Rhys's progress. He is starting to repeat some words and I swear he is acting like he is talking even though you can't understand him.

My entire household, save myself, is sick. Both kids and Cody are on antibiotics. Rhys's was just because he had drainage he couldn't get rid of. Poor Zoe ended up needing a breathing treatment, antibiotics and a steroid. She tested negative for RSV, which had my heart pounding just thinking of the possibility, and responded very quickly to the meds. Rhys received an Rx cough medicine right after Zoe was born, but this antibiotic was his first real prescription. Not too bad I guess considering he is nearly two and a half. Cody has been running fever for two days now. He tested negative for flu and strep. They are supposing it is viral but gave him an antibiotic for good measure. He thought he was funny today when he said "I hope I don't have malaria". Nice, babe.

Zoe is finally starting to weight shift. She just started that today. She's been standing very well for quite some time, but she stayed planted to the ground and never lifted so much as a pinky toe. Today she started picking up her feet. Hooray!

Thanksgiving is just around the corner and I can not believe it! I say that every month though... "I can not believe it is already (insert month here)". Thanksgiving last year marked my 20th week of pregnancy, where I started to mentally flip out.

We are trying to figure out what to get the kids for Christmas. As if they need a single thing. I believe we are going to get a play set for the backyard, probably after the first of the year. We have lots of lovely parks in our neighborhood, but it'd be nice to just open the back door. My cousin lives down the road and visits frequently, so with three kids between us this may be a nice little mommy treat to keep the kids occupied and give us a breather.

In addition to the equipment Rhys will be getting Cody and I purchased him a Special Tomato chair. This will give him another sitting option besides his seating system. It is also smaller and portable and can be attached to a regular chair. We've recognized Rhys's sitting problem for over a year and have bought many things to try to help him to no avail. But we never thought to look in medical supply. I am angry at myself for not knowing this stuff existed. I am also upset the PT didn't recommend something sooner. Rhys should have had a seating system a year ago. We love the PT, but someone let this slip.

Lastly, I am not liking how my days bleed one into the next with seemingly no purpose. Other than when the kids need things I have no schedule to speak of and it is driving me nuts! It seems to have gotten very bad lately. I am awake until all hours of night/morning and am tired of feeling like I'm running in circles. A fellow preemie friend asked if I was interested in volunteering at the NICU with her on the weekends. I am seriously thinking about it! It may be nice to have something that requires my time besides my lovely kiddos.

shoes and AFOs

2010-11-12T20:41:00.006-06:00

AFOs are in! Rhys opted for the camo look. He's cool like that. We are slowly introducing them to his feet. There are many pressure points with AFOs and the goal is to avoid skin break down. So he is wearing them for a few hours a day, for maybe a week or so. He doesn't seen to mind them unless he is on the floor trying to move around. They aren't super heavy, but I would definitely describe them as bulky on the feet.

Next thing to address are new socks. It may not sound important, but I think Rhys needs seamless knee-high socks. With no ribbing. Think of the impression left on your skin when something is firmly pressed against it. The fold-over ribbed socks we've been putting on Rhys's feet are leaving marks after the AFOs are removed. It might not make a huge difference but we want to make it as comfortable as possible for him since he already has a rigid brace to contend with.

Which brings me to shoes. Rhys's foot is a bit wide to begin with. I've tried several shoe brands that typically work with AFOs, but they still don't fit well. So, I googled it and there are several manufacturers who make orthopedic shoes for children and adults with AFOs. Score! I picked these out.

And Grammy was kind enough to buy them for Rhys! They are designed to fit around an AFO, so are deeper and wider than traditional shoes. I'm super excited about them. Surprisingly, they weren't outrageously expensive as most medical equipment related things tend to be.

Last piece of learning to walk is the gait trainer. I still have not heard from our rep despite leaving her a message requesting a call back. It's getting ridiculous and she is about to incur the wrath of Candice!

o.m.g.

2010-11-09T11:45:00.004-06:00

First time EVER Rhys has held a bottle/cup by himself to drink. With no prompting whatsoever! He was so excited!! Of course my making a huge production of it could have had something to do with it.

I had to snap the picture really quick like before he figured out I was watching. That is normally when he does things, when no one is giving him the stare down. I need to find him a good, usable straw cup with handles. Preferably that is spill-proof. The only problem with any spill-proof cup is that it is sometimes hard for me to get the liquid out. And, Rhys only likes these certain straws. They are the ones that come in the honey bear cups. I actually like them too, because they are bendable and basically indestructible. I got Cody to buy a roll of ice-maker tubing at the hardware store for less than $5. It is the same material the honey bear straws are made of and I've been cutting away at it for months. I found these take-and-toss cups the other day and they are a perfect fit for the straw. They aren't spill-proof, but they at least have a lid. Anyway, if anyone has any ideas I'd appreciate it!

equipment has been ordered!

2010-11-07T21:33:00.003-06:00

Rhys's equipment has been officially ordered. I think. The gait trainer was supposedly ordered more than two weeks ago, but when the rep returned last week to help us choose Rhys's seating system it didn't sound as though that was the case. If you know me at all you know I hate this! Don't act like you're going to do something if you have no intentions of following through. I have made it abundantly clear that this needs to be taken care of a.s.a.p. because (a) Rhys needs it yesterday and (b) it needs to be filed on insurance before the end of this year, not next year. GRRR. Anyway, all the selections have been made so hopefully the remainder of 2010 will be sufficient for the 2-3 week lead time.

This is Rhys trying out a demo. We decided on this model actually. It is honestly a little scary looking if you ask me with all the attachments, but it has all the required features that will make Rhys sit properly.

The seat forces him to sit at 90 degrees by positioning his hips so he has to sit on top of them instead of leaning back. Not comfortable to sit ramrod straight but that is the point. It also will allow us to strap in his feet so he can't work to slide his rear out from beneath him. He loved the chair! I think he will enjoy being able to sit at the same height as everyone else. Plus the chair has a tray and can also be easily pushed up to a table. We go for his AFO fitting on Wednesday and I am anxious to get them as well. I really think they will make a difference for him.

And this is Zoe. Yes I know she is wearing boy clothes. We're recycling Rhys's PJs. But she has on pink socks!

Zoe is sitting very well. She occasionally loses her balance when she reaches for something, but when she does topple she doesn't fuss and quickly rights herself. She is not even a tiny bit interested in crawling. She rolls any where she wants to go and seems completely happy with that right now. I am trying and trying to get her to understand she could move on arms and legs but she is having none of it. She loves to bounce. More so while you're holding her than while in her bouncer I think. Oh, and she's decidedly moody once it's time for a nap or time for bed. I am talking the screaming comes out just like flipping a switch. I'm loving watching her personality develop.

book casualty

2010-10-28T12:38:00.003-05:00

One of Rhys's favorite books finally bit the dust. As you can see it was well loved. I don't think he'll miss it necessarily, but I will have to dig another out of the pile to be sacrificed to the oatmeal smears.

And this is typical of the kids playing. Zoe and Rhys both roll all over the place. And never mind whatever who whoever is in the way.

Today Rhys is 27.5 months old and Zoe is 7.5 months old.

my house is a mess, um, lived in

2010-10-24T21:40:00.003-05:00

I am at last experiencing the joys of having a child that gets into everything. Rhys might not be walking but he sure can make one heck of a mess. My house constantly looks like this.

Top to bottom. Not sure exactly how that happens since the kids are confined to the floor, but it does in fact always look like it needs to be cleaned. I am not at all a neat freak, but I do like things to be put away. But alas that just isn't how my family functions. After five years of marriage (oh, and children) I am still trying to resign myself to the fact that my neat and tidy days are on hiatus. Hopefully not forever.

Rhys is sick. As a dog. It's a bit of allergies with a cold mixed in. And it's bad. I am talking buckets and buckets of that clear white gunk that hides in the nose. It is t.e.r.r.i.b.l.e. He can't breathe, can't sleep, and coughs like a mad man, which incidentally makes him furious when he has a lengthy coughing spell. I am breaking the no meds for children under age six rules and giving him children's mucinex. It does seem to be working, but I still wish it would expedite the recovery process. I do not know how many more nights of hearing him snore and wheeze on the baby monitor I can take. I'm scared to turn it down too low for fear of not hearing him so I hear him all night long. Now we just wait to see if Zoe gets it. Ugh, I do not relish the thought of having them both sick.

And just in case you're wondering, Rhys hasn't forgotten how to drink from a straw. I was almost scared he would. I am still amazed every time I watch him do it. Up until now the only liquid he really got was milk/pediasure when he had a bottle. I'd offer him water, tea or sometimes juice frequently but he never drank much because it was difficult for him to regulate the open cup. Yesterday alone he drank about 8 ounces with the straw. I'm hoping this will be a good opportunity for more calories. I'd rather him drink mostly water but the kid needs calories, and he loves tea, so I usually let him have it. He isn't much on juice, but if he was I'm sure I could find some really good, high calorie ones for him to have. I'm trying to figure out how to use this development to our benefit and push a new eating strategy on for him. Problem is I don't have one quite yet, I'm still working on it...

success!

2010-10-22T17:49:00.002-05:00

Holy crap, Rhys can drink from a straw! I can not even tell you what a big deal this is for our household. He is still trying to figure out how to regulate the flow, but OMG he is drinking from a straw!!

happy seven months, Zoe!

2010-10-16T05:22:00.005-05:00

We finally got the doctor sign-off for all of Rhys's equipment. The medical supply rep is coming this week to measure for his gait trainer. I'm so super excited to get this puppy! I don't think it's going to be easy to get Rhys to focus his attention on it, but the potential of mobility for him has me all aflutter.

We are also purchasing Rhys a seating mobility system. These systems are normally used by those who can't utilize a typical stroller, which Rhys can and does, however we do not know whether Rhys will be required to have one to go to school next year. So since we are going through the rigmarole of ordering the other various things we are ordering this as well. If you've not had to go through this process with your insurance suffice it to say that it is a drawn out lenghty process you do not wish to repeat unnecessarily. While Rhys maybe not strictly need the mobility part of it he will certainly gain some benefit from seat positioning. Rhys's unwillingness to sit is a result of his torso not being properly positioned above his hips. Make no mistake, he can do it he just doesn't want to. It is easier for him to lean back and use his "tone" pattern so he takes the path of least resistance. The idea in this case isn't to make him comfortable in the seating system. It is to force him to align his body properly, break out of his tone pattern and strenghten the muscles that will allow him to sit properly.

Last piece of the puzzle for now is his AFOs. We go in two weeks to get his foot molded for these braces. I hope they help in the way I think they will. Rhys's feet are more often in a slightly pointed position than not which is a result of his tone. The AFOs will force his feet into the proper position, again, to make his muscles break out of the tone pattern so they can strenghten and be used properly. When Rhys stands flat-footed he is obviously much more stable than when he tries to stand on his tip toes. Hopefully all these things together will significantly help his motor skills.

Overall, Rhys's development is moving right along. He really is a clever little guy. His comprehension level is high, he just doesn't have a great ability to verbally communicate yet. Though the speech pathologist says the mouth muscles are getting stronger, which will help is speech. Speaking of the SP, part of that whole effort is to get Rhys to suck properly from a straw. He has been closing his lips around the straw as he should and he can actually drink from a straw, but it is mostly accidental at this point. He still hasn't made the connection of sucking to get liquid. We'd previously been using the sippy bear cup, which allows you to squeeze liquid out much like a juice box. But as you can imagine that is only confusing in this instance as Rhys isn't having to work for anything, it just appears in his mouth. So we've quit using that all together and he only gets an open cup or the straw presented to him for liquids other than milk. He will figure this out, it is just as with everything else - this is going to be something he has to do on his own. No amount of prodding is going to make him get it more quickly.

And speaking of drinking from a straw, Zoe figured that out yesterday. It is amazing to see what a quick study she is in all things. Cody and I can not believe how quickly she picks things up. Not to sing the praises of my child, I do not feel she is any more gifted than another, it is just a comparison to Rhys's learning process. She also can almost feed herself a bottle. She can't quite support the weight when it's full, and she doesn't quite get the raise/lower concept, but she isn't far off. Rhys still refuses to give himself a bottle, so imagine having to do that for 2+ years. :) Oh, and Zoe is sort of turning herself when she's on her tummy, but she hasn't quite found anything interesting enough to make her move forward. She is still trying to figure out how to get those legs underneath her, but she's just recently become interested in wanting to grab and touch everything she sees. We are currently at that in between stage where she is is incredibly inquisitive, but not yet mobile.

October 15th

2010-10-15T18:39:00.004-05:00

Today is national pregnancy and infant loss awareness day. We miss our baby boy like crazy and think about him every single day. But we know he is keeping great company. I find it unbelievably sad that parents lose their children prematurely so often there needs to be a month of recognition.

groceries, food fights and a wedding

2010-10-11T23:00:00.006-05:00

The kids at the grocery store this afternoon. Apparently the balloon hander-outer saw Rhys eyeing the balloons so he walked over to give him one. Zoe started grabbing at Rhys's so Cody went and got her one of her own. Zoe still wasn't happy and kept grabbing for Rhys's, which he was not happy about. Any time her hand crossed to his half of the buggy he kindly picked it up and put it back to her side. He's funny that way.

Cody and I have been continually fighting with Rhys on the food front. I have been making most of Zoe's baby food lately, which is a great opportunity to try new foods with Rhys. Rhys still doesn't chew properly so his food needs to be a certain texture so when I make a batch for Zoe I make Rhys try it too. I'm trying at least one new food every day with him in attempt to break through his unwillingness to deviate from the norm. It is good stuff, not the jarred food, so he should enjoy eating it. But that isn't the case. He.hates.anything.new. He is a clever little dude and has figured out that if he doesn't close his mouth he doesn't have to swallow. He has even started raking his fingers in his mouth to clean it out. GRRR. Used to if we got a bite in his mouth he'd swallow, but not so anymore. I think his allergies are making him crazy. He has a cough, and very slight drainage. But it's enough to make him refuse just about everything we offer him. It's also enough to set off his puking. I think we've changed his bedding three of the last four nights. Have I mentioned how tired I am of cleaning up puke?!

We had a country wedding last weekend. I guess more specifically it was a wedding that occurred in the country. My SIL and I stood alongside a field of these guys...

... trying to keep the kids quiet. I stole these pics from my BIL by the way, thanks B! Anyway, the picture of the longhorn was snapped and immediately it charged the fence. Lots of fun. But all kidding aside, the wedding was absolutely beautiful.

I just wish the mosquitoes would have have gotten the vacate notice because Rhys ended up with eleven bites, mostly on his face and neck. Yes, I counted. I felt like a terrible mother.

to the zoo we go

2010-10-07T23:42:00.007-05:00

Today was our first family trip to the zoo. We purchased a membership with the intention of making this a frequent thing for the kids.

We started out by watching the ~~seals~~ sea lions put on a short show. Zoe kept leaning over to check things out. Rhys was bothered by the sun in his eyes and quickly lost interest.

The last time I'd been to the zoo was about five years ago when I did a volunteer project with the company I used to work for. And, Cody hadn't been since he was a kid. So it was kind of exciting.

The weather was beautiful - sunny, with a clear blue sky and a high of upper 80s. Rhys and Zoe both did great strolling around. I was excited for them to get out and about for a "typical" experience, since we don't always get a lot of those.

Despite staying out past their usual nap time they weren't horribly cranky. Zoe can and will sleep just about anywhere if she gets too tired. Rhys is my wild card and will normally hold off falling asleep until he gets into his bed. Overall, a great time!

Rhys is mobile! Sort of...

2010-10-05T21:27:00.003-05:00

Rhys continues to refine his modified army crawl. He isn't all over the house, but he can certainly get to and from whatever toy (or lamp cord or shoe or remote) he sees that strikes his fancy. He hasn't really left the confines of the living room, but I'm sure that day will come. He is using mostly his upper body to pull himself, but he really is trying to get those legs beneath him. It really breaks my heart to see him grabbing at his legs willing them to move. But, I am hopeful this is like everything else in that it just hasn't clicked for him because I know his legs are capable of more movement. We're making another push towards food variety with Rhys. And we're having a tough go at it. He.is.so.stubborn. His latest trick is to keep his mouth open, refusing to close it and swallow the food. All while screaming mind you. I've never seen such a hard-headed toddler. Sheesh.

Cody and I took the kids to the pedi for their well baby visits yesterday. Rhys started wailing before we even made it to the exam room. After his two shots Zoe was crying and screamed through her four. Lots of tears were shed. But, the kids are all caught up now and all of us now have had our flu shots. Rhys is about 30th percentile for height/weight and Zoe is 60th for height and 75th for weight.

Zoe is oh so close to sitting on her own. She does it perfectly while in her high chair, but when you put her on the floor she isn't so willing. We attempted 6 month pics for her last Friday, but they didn't go so well so we're having to reschedule.

germ control

2010-10-01T09:49:00.003-05:00

speechless

2010-09-26T09:21:00.001-05:00

just for fun

2010-09-23T20:32:00.009-05:00

I am somewhat crafty. Not so much in creating things of my own design, but I'm pretty good at copying someone else's. I'm also somewhat ~~cheap~~ thrifty. And, I like distressed/old looking things. Combine all that together and it somewhat creates a hobby of repurposing furniture. Over the years we've painted several pieces of furniture - our bed and the guest room furniture, plus the desk in our study.

When putting Zoe's nursery together I wanted to avoid spending $500+ on a new dresser so we started shopping the classifieds. We lucked out and came across an awesome garage sale find that is working perfectly as a dresser, and doubles as a changing table. I love love love this dresser and think it turned out great, if I do say so myself! Especially considering we spent less than $100 on the dresser and materials.

Most recently, we've discovered our small round breakfast nook table just wasn't cutting it anymore. I've been shopping for weeks trying to find a table that meets our needs, but again not wanting to spend several hundred dollars on a new one I shopped used, and found one similar to this.

Just finished our $40 Craigslist find last night. After a lot of (Cody) sanding and a little left over stain it came out looking like this. I love it this piece too and much prefer the price tag compared to the new ones I was looking at.

crib replacement

2010-09-20T22:23:00.006-05:00

We've decided to replace Rhys's crib with a regular bed. After getting up to untangle Rhys from an awkward position no less than four times last night it occurred to me (finally after dealing with this for quite some time) that his crib is too small. Rhys rolls all over the place and gets himself into strange positions, then wakes himself up when he can't get out said position. The crib does convert to a toddler bed, but that would leave him the same amount of real estate. Not to mention I am constantly hearing squeaking on the monitor as he flops about, so I think a larger bed would be nicer for him. Yes other 2-year-olds sleep in toddler beds just fine, but Rhys doesn't have the same set of motor skills and his rolling/movements aren't quite as refined. So, we're going to convert his crib into a full-sized adult bed and add bed rails to the sides to enclose it. It's going to be trial and error (hopefully not error that lands Rhys on the floor!), but we have to make it work because the poor kid can't get uninterrupted sleep. I'm sort of excited to do this for Rhys because I sadly never finished his room the way I had intended. He's had all the pieces, but not everything has had a home.

Zoe on the other hand is having no problem sleeping through the night. Finally! I hope I didn't just jinx myself. Not that I believe in that, but you know just in case. She's been in her own room less than a week and already she's sleeping until at least 8 a.m. Wasn't I just saying she was waking too early? I'm crossing my fingers the late mornings continue.

Cody is finally back from working on the other side of the globe. After having two kids by myself for four weeks I have a new respect for single mothers. And God bless working single mothers. I'd lose my mind if I had to handle an eight to five job on top of the kids. Since it is easier to be out and about with two sets of hands I have put off a lot of things that need to get done. My goal this week is to find Rhys a decent, but not outrageously expensive, mattress set and new bedding. We also need to make appointments for all the doctor's visits I've been putting off, including getting flu shots for all of us. And Rhys needs a haircut - even though I love his hair he is looking a little shaggy lately. Lots to do!

Zoe got the boot

2010-09-15T19:40:00.005-05:00

Zoe's been sleeping in our room since she was born. Initially for us to learn her quirks and become accustomed to a new baby, but then a few weeks turned into six months. What can I say, it is ever so much easier to move three steps instead of clear across the house when you're half asleep. And until recently she was showing no desire to eat less than three times a night. Even easier - Cody was away a lot the last few months and Zoe slept in his spot on the bed! Who wouldn't want to sleep next to this?

Last night was Zoe's first night ever in her crib. She's taken naps in her room, but never slept overnight. She went to bed just as easily as she always does. She even slept until her normal time of 5 a.m. Well, I'm assuming. My eyes popped open at that time even though Zoe wasn't crying or making any noise. Sure enough she was wide awake and staring at the light on her camera monitor. I almost got up to feed her, because that is what I'd normally do, but I stopped myself. She didn't look unhappy and she is well past of point of being able to sleep through the entire night without eating. So I stared at her for a while, as I am want to, thinking it's a good thing she is so stinking cute else I might be cranky about being awake at 5 a.m.

I was about to roll over to go back to sleep when I heard Rhys screaming. Ugh. Zoe's room is right next to Rhys's and I could see she heard him. She wouldn't be going back to sleep with all the noise so I checked in on Rhys then went ahead and put her in bed with me to feed her ('cause it is just easier that way). I really needed Zoe to eat anyway, if you know what I mean. By the time she was done eating Rhys was back to sleep, then Zoe and I fell back asleep.

Now if only I could get her to sleep until at least 6 a.m. (but mom would prefer 7 or later if you're listening Zoe) and Rhys to cease his obscenely early morning screaming fits...

equipment purchase process is in the works

2010-09-10T11:33:00.006-05:00

After "thinking" about it for many weeks, we're finally getting the ball rolling on Rhys's orthotics and equipment. The PT has been waiting for Rhys to start breaking out of his tone pattern (i.e. move his legs independently and with purpose) before she moved forward with the process of requesting and ordering everything. She thinks he'll only need ankle supports, called AFOs I believe, for walking. This would be to help Rhys's feet stay in the proper position and help him use his muscles in the proper way instead of using the muscles in the tone pattern. Long term she doesn't believe he will need the braces, but that is something only time will tell us. CP isn't progressive, however the effects of not being able to move do ultimately affect the body and cause it to change. Rhys's case seems to be moderate, and he's making great progress, so we're hoping all this hard work pays off for him.

We've decided to get him a gait trainer instead of a stander. Since Rhys does very well bouncing in his jumperoo the PT feels this will be more beneficial for him than a stander because he'll get the benefit of mobility and the weight bearing. His gait trainer will look something like this.

The straps, handles, etc. that you see are removable and Rhys will not require all the attachments. The idea is to get everything Rhys might require and remove it as needed. I'm super excited to get this for Rhys. It is going to take a bit of learning for him (initially I think he will be more interested in the straps than the ability to walk), but I think he's going to love it once he figures it out. He doesn't get in the baby walker often because it isn't designed for toddlers, but when he does his face lights up when he starts moving around. The PT doesn't think he will need this long term, but again we don't know that for certain.

Rhys started his level 2 swim classes this week. Not much different than level 1 classes, just more under water work for the kids. He is getting good at grabbing onto the side of the pool (they teach and encourage "monkey crawling" for safety), but he doesn't yet understand the concept of moving around the edge. He tried to steal a little girl's toy while we were sitting on the step waiting our turn and I had the most inappropriate response of "way to go, Rhys!". He's never tried to take a toy from anyone other than Zoe and she doesn't really count because she can't take it back! He's becoming much more aware of his legs, literally, and grabs onto his pants/shorts a lot. He is also using his upper body to hang on to things and hold himself up. And the boy has mastered the art of rolling and can get pretty much get anywhere in the living room that interests him.

little Z

2010-09-02T19:21:00.004-05:00

Zoe is growing so fast. She is the same age right now as Rhys was when he came home from the NICU. Wrap your mind about that one! She is nearly 16 pounds and still loves to eat. Rhys, on the other hand, was about 8.5 pounds at this age. And it amazes me still that despite all our feeding challenges we've been able to get him to the 25%tile on the charts for actual age. But I digress, this is a Zoe post. This is from a couple weeks ago when she had her first cereal.

She picked it up extremely quickly and now consumes a huge bowl full of cereal and apples two times a day. I haven't given her anything else just yet, but I'm sure she'll devour that too! More and more she is acting as though just the milk doesn't satisfy her. It is extremely strange having a child who eats normally. That you can take her out and about and not worry about feeding times and whether you're near a microwave is a novel thing for this household.

I finally have a decent sleeper! For the longest she was eating on demand, every 3-4 hours. Even through the night. She now sleeps anywhere from 7-9 hours a night, consistently. Hallelujah! The only problem is that she goes to bed around 8 and I can never get in bed before midnight, so I still don't get uninterrupted sleep, but this is still much nicer. She also is starting a regular nap pattern, with a small cat nap in morning and afternoon and a longer nap around noon. She is great as far as getting to sleep too, hardly ever fights it unless we're out in public, but eventually she will fall asleep. Hopefully the transition from our room to her crib will go smoothly. I'm about to do it! I really am! I have been putting her to nap in her crib quite often and she does fine, so I'm crossing my fingers she gets the nights down quickly as well!

She's been rolling for a while. Her first roll was from back to tummy, and that is almost an automatic as soon as you put her on the floor or in bed. She sometimes rolls from tummy to back, but not often. She is constantly pumping those chubby little legs and starting to pull one at a time up under her. She absolutely loves the jumperoo, about to the same degree as Rhys.

She isn't quite interested in sitting by herself, but if you have her in your lap she will try to pull away so she isn't resting against you. Rhys and Rollie had better watch out because she stares them down as though she's ready to pounce! Rhys loves his little sister and Zoe is becoming very interested in him as well. I'm going to pretend that is the way it will always be because I don't want to think about separating them from fighting when they get older. :)

2 yr high risk follow-up

2010-08-30T16:32:00.007-05:00

Today was Rhys's follow-up with the high risk clinic at the hospital. We volunteered Rhys in a study while he was in the NICU in order to hopefully help other kids with the research. If you've been reading since day one you will remember us speaking of Dr. Gloom. He is the one heading the study, however we did not see him today. We saw the developmental pedi who will (I'm assuming) pass along the information she collected. They are looking for issues with vision and hearing (which Rhys doesn't have, except the small Rx for farsightedness), and developmental/motor issues (which Rhys has an abundance of). Anyway, the appointment lasted for more than three hours. Rhys handled the length of it better than I expected, but it was just as tiring as I anticipated.

What did we find out? Nothing really that we weren't already aware of. Rhys does have some form of CP. The pedi called him a mixed bag of tricks. He doesn't clearly have one type or another, so she is going back to read the clinical definitions to see how to best identify him. He has spastic CP (because of the stiffness in his legs - which is in line with the location of his brain bleed, it effects leg movement), but he may or may not have it in his arms. He has good motor skills in both arms, but what to do with the fact that the right side is weaker? I don't know a lot about CP to be honest. I've always confused myself with the fact that Rhys has tightening in his legs, but then has weak muscle tone - which seems a contradiction to me. I do know that people with CP can walk and otherwise lead normal lives. On a scale of one to five, one being walking independently and five being completely dependent upon someone else, Rhys is currently somewhere in the middle. The pedi said he is about a year behind, which follows that he was a year old before he started doing much of anything. As we've always been told, it is when kids stop developing that the doctors start to get worried. A lot of times they reach a point developmentally and then it becomes evident there isn't much more to expect from them. She seemed to indicate that is what is typical, and that Rhys's continued development is unusual. I don't really understand that fully so I need to get clarification as to why, based on Rhys's history, she'd expect this of him. I want to know if it is based just on his prematurity or something else.

So, what does this mean? Nothing really. We are doing everything we can think of in terms of therapy for Rhys, and it is just too soon to tell. Rhys's development is very delayed, but how much of that is due to his extreme motor delay? Based on how Rhys has developed I've always felt like if/when he could figure out how to move so many more pieces would fall into place for him. I'm a realist so I don't feel that is being overly optimistic. I just wish we knew the final outcome, but no one does. A baby's brain is so elastic that anything is possible. It is the not knowing that drives me crazy.

But in the meantime, he is healthy and doing well with all his therapy. His PT told me last week she feels like he will walk, he might have a limp, but she thinks he'll move independently. We are starting to discuss orthotics for his feet to help with the scissoring of his legs when he walks. Which incidentally is a bit improved. There has also been discussion about a stander, to make Rhys build his leg muscles up a little more. We're still not sure if Rhys will need a walker when he first starts, but if he needs one we'll get that too. The speech pathologist started up again last week after being on vacation for six weeks. He said he noticed definite improvements in Rhys in that short of a time. We have noticed them too. He isn't anywhere near one hundred percent, but he's getting better with eating and talking. He has always babbled a lot, but now he is articulating his words better. He says mama and dada frequently, in relation to either me or Cody, but not in an attempt to get our attention. It is more like I pick him up and he says mama. And he's also thrown in "no" a few times. The SP has said repeatedly that he thinks Rhys will do well in speech and eating, so I'm going to defer to the expert!

happy birthday

2010-08-23T16:17:00.002-05:00

A super happy 2nd birthday to Rhys's fellow Zaky lover, Parker. Where has the time gone, Mere?

please stop the puking!

2010-08-21T20:06:00.005-05:00

When does it stop? I am so tired of cleaning up puke. At least Rhys is a happy puker and doesn't get upset about it. I don't know if I could handle that with as many times as he pukes in a week. The terrible twos are quite enough, thank you.

I recently had to stop the mouth exercises (which incidentally I see are actually working bit by bit) with Rhys because he was puking at every.little.thing. - related or unrelated to the exercises. He had just stopped in the last few days, and I was about to start them up again. But first I had a brilliant idea to switch him from Pediasure to Carnation Instant Breakfast. One, it's cheaper. At the least expensive I've found it Pediasure is about $1.33 per 8 ounces, whereas the Carnation is about $0.80 per 8 ounces. There is similar nutrition, and Carnation even has a few more calories when mixed with whole milk. Second, and my main incentive, was that it is actual milk vs. whatever it is Pediasure is made of. Anyway, this is day two of no Pediasure. He wasn't super excited about it, but he's been drinking it. And just now he totally p.u.k.e.d up the entire contents of his stomach. Which is what inspired this omg moment. *sigh* I have to chalk this up to the milk because nothing else has changed. He's had cow's milk from the time he was one year adjusted so I know he isn't intolerant. So it is the extra quantity? I don't know. All I know is I h.a.t.e cleaning up puke.

welcome

2010-08-20T18:01:00.003-05:00

Welcome to the world Mr. Zach. Not that I matter, but thank you for waiting 36 weeks. I know your parents appreciate your patience. ;o)

take five

2010-08-13T09:46:00.002-05:00

Five years, three beautiful babies and a lot of living life. We've shared many experiences neither of us planned for, but here we are. Happy anniversary to my love.

I should...

2010-08-11T23:22:00.010-05:00

I feel like I do everything, all day long, yet nothing gets done. I wash clothes, wash dishes, wash kids, only to have to do it again minutes later. And then there are the million other things I should do...

I should actually get out of my PJs every day and put on makeup.

I should be a little more motivated to get the kids out of the house more often.

I should tell you Zoe, and her first cousin Ian, share the same birth day. That's another story!

I should stop browsing the internet as often as I do.

I should actually exercise, eat right and attempt to lose my last 8 pregnancy pounds instead of staring at the scale wondering why it isn't moving in the right direction.

I should make sure I see my baby brother more often. I love him dearly and he loves my kids!

I should push Rhys a little harder with the foods he eats instead of taking the easy way of not aggravating his gag reflex and thereby skipping the cleanup of vomit.

I should quit avoiding telemarketer calls, and instead answer to remind them I'm on the Do Not Call list and quit dialing my number!

I should try to have more patience with Rhys and his whining instead of fussing at him for not communicating with me in a different way.

I should schedule the well baby checkups for Rhys and Zoe instead of dragging my feet because I feel they've both been stuck more times than they deserve.

I should make an appointment for my OB/GYN checkup instead of avoiding that place like the plague because I was there so often the last twelve months I now know everyone's name and job function.

Okay, I should really stop now before I start to sound like a whiner...

I am really not this crazy, I just get wired when I have a mental "to-do" list. Which is quite often lately it seems since my mind races with all the things that need to be taken care of. And that keeps me from sleeping. Like now. But rest assured... I am not feeling overwhelmed, just a little over worked. :)

the shirt says it all...

2010-08-01T17:52:00.002-05:00

2 yr & 4 month updates

2010-07-25T20:08:00.006-05:00

Rhys and Zoe are both getting so big. At Rhys's last nutrition appointment we realized that even though he'd been gaining some weight, it wasn't quite what it needed to be. So, we've been pushing extra snacks so he'll get more calories. I really think he needed the extra calories anyway. It is hard for me to gauge what he wants/needs since he doesn't communicate except for whining. I think it's working pretty well though because he is nearly 25.5 pounds, which is a pretty good weight gain from the ~23.5 pounds.

We've been doing the mouth exercises the SP recommended. I have been bad and forgotten to do them a few days. I can't do it after he eats because he'll gag and throw up. I had a duh moment that ended with me spot botting my rug. Rhys actually handles it fairly well, though he wants to chew on the little tool I stick in his mouth. Which would be okay, because that is actually one of the exercises to get them to chew with his molars, except that I also have to stick my finger in his mouth to "stretch" his gums. I'm sure you can see where this is going... he has mistaken my finger for the tool and I got a first hand feel of his sharp little teeth. I can see a small improvement in his speech. He isn't talking or using words, but I really think he's articulating his sounds better. And, maybe there is a tiny improvement in his chewing. I gave him something the other day that was out of the norm and even though he did have a bit of a gag when it didn't break down as quickly as he wanted he kept chewing and worked through it until he swallowed.

Rhys is also rolling all over the place. It is getting very easy for him to roll onto his stomach. He used to be a little hesitant and had to put a lot of effort into it, but now it's very smooth. He is also starting to raise up a little on his elbows. He still gets extremely frustrated when things do go his way, but I see his little brain working trying to put things together. I typically put him on a sheet instead of laying him directly on the ground and instead of working to move towards what he wants he's started pulling the sheet to bring it towards him. Even though I'd rather him learn to crawl that is problem solving.

Last week Rhys really got into his swim lessons. He started kicking in the water and also was participating in the other activities. The instructor said he was doing great with his swim skills. He doesn't want to monkey crawl along the edge of the pool, and he obviously can't crawl out of the pool, but he is enjoying it and the PT thinks it is really helping his tone.

Zoe is talking up a storm and is starting to laugh. We've been working on the floor trying to get her to push up and she hates it! She recently discovered the mirror and it's hilarious watching her look at herself. What a ham! She's been drooling a ton and chewing on her fingers. And the bottom front of her gums are a bit puckered and hard. It seems like she is teething, though when Rhys's first teeth came it in was a total nightmare, so either she's going to be a good girl and not give us fits or the teeth aren't close to popping through just yet. She still has no eating schedule to speak of, and wakes anywhere from one to four times a night. I am all about the nursing thing, but man I can't deal with this for much longer. Hopefully she'll regulate the eating a little better when she starts solids because if she doesn't we're moving to the bottle!

random commenters

2010-07-22T08:54:00.002-05:00

Completely random, but am I the only person who is having issues with the random comments in Chinese that are showing up on posts? Any clue on how to block these people? I'm getting tired of deleting them. And I accidentally clicked on one of the links a while back and it went to a site of border-line child pornography.

happy 2nd birthday, my loves

2010-07-16T08:59:00.007-05:00

Two years ago today our lives changed forever. I swung my legs over the side of the bed and headed towards the bathroom to get ready for work. After only a couple of steps I felt the pressure and cramping. My stomach sunk after I discovered blood on the tp. I frantically called Cody wondering what I should do. I quickly got dressed and rushed to the OB's office as fast as I could safely get there. I was breathing through contractions the 20+ miles to the Med Center, feeling like I was getting stopped at every light along the way. A cervical exam revealed I was fully dilated and Rhys's sac was bulging. Minutes later I was wheeled into triage for an emergency delivery. And my beautiful boys were born more than 16 weeks premature.

There are some experiences in life they have not invented words to describe. This day, two years ago, was one of them.

Happy birthday to my two perfect angels. To my Bentley, we love you and miss you more than I thought possible. And we think about you every day sweet boy. Rhys, you are joy personified and we're blessed to be your parents.

our little diva

2010-07-08T09:08:00.002-05:00

Zoe is growing, growing, growing. I couldn't believe when she was born. Healthy and all tiny with loose skin. We don't have loose skin any longer!

In fact, this baby girl is pleasantly plump. Everywhere. I love watching her personality develop.

She's got a great smile, just like Rhys. And she's now starting to "talk" up a storm. When I was pregnant I kept telling Cody she was going to be a busy body because she was constantly kicking. And so far that has proven true.

sitting, tummy, swimming and speech

2010-07-06T11:57:00.007-05:00

I'm working really hard with Rhys and his sitting. He gets h.o.r.r.i.b.l.y upset when I make him sit. He isn't angry, his feelings are hurt, and I can not understand why. He is uncertain and sometimes unsteady so I think he's feeling a little out of sorts when he's not surrounded by a barrier (i.e. us, the couch, chair, etc.). He is in the beginning stages and can mostly only prop sit, but the catch is that he doesn't want to use his arms to prop himself. Hands are for grabbing things, not bracing yourself! He has enough muscle control to keep himself upright if he is still, but let's face it, that rarely happens as Rhys is an inquisitive little dude and has to touch everything multiple times to check out all the angles. Another issue is that he has always relaxed against us when we hold him and he's always been caught when he falls. So now he thinks it's a great game when he throws himself back and we catch him. We've been trying to break him of that for a while now and haven't been fully successful yet. I have always thought if/when Rhys could sit more of his development would fall into place. Certainly his standing will not happen until then since you need to be able to control your torso in order to balance on your feet. If he can sit upright he can have greater access to his toys and range of movement of his arms. If, if, if, if.....

While playing with Rhys on the floor today he did something he's never done. He rolled all the way over onto his stomach to play with a toy. All by himself. Holy moly! Talk about a shocker.

We've tried many times to get him to play on his stomach but he immediately rolls onto his back. For him to intentionally roll onto his stomach (out of the blue!) to play with a toy is very exciting for us. Maybe, just maybe he will start doing this more frequently, which will lead to his legs working a little more so that he finally realizes he has the capability to (gasp!) army crawl. He definitely has the motor skills required to do that at this point, but he needs to put a few more things together first.

I have no idea if this is a coincidence, but Rhys has made these two good strides since he started swim lessons. It is hard for me to say he is getting that much benefit from swim so quickly, because even though we participate in all the activities he is mostly still an "observer" at this point and doesn't join in with the kicking, blowing bubbles, etc. I hate being wrong, but I'd love to be wrong about this.

The speech pathologist started his sessions two weeks ago. Only to leave for India this week for vacation. He showed me the exercises he wants us to do and anticipates we should at least see some changes in eating by the time he returns from his vacation in s.i.x. weeks. He offhandedly mentioned Rhys should be sucking from a straw by then, but I'm not going to hold my breath. I'd love it above all else if he was, but I'd settle for him gagging/choking less. All this progress at once is nearly too much for my little brain to process.

to tears

2010-06-27T11:39:00.003-05:00

Rhys woke up extra early this morning. His poor teeth have been giving him fits again. Darn those 2 year molars! I took him into the living room to play with some of his early birthday loot and my baby boy decided to sit all on his own. For an extended period of time. Even preventing himself from toppling over. Which has never happened before. That brought me to tears. :)

thank goodness for the swing!

2010-06-16T12:29:00.006-05:00

I wont go so far as to say Zoe loves her swing, but she'll take it as an alternative to being held. She'd much prefer to be in the thick of things, on someone's lap or in their arms, to see what is going on so we've had to raise the seat angle so she is more upright. She gets being nosey honest. From me. :)

And no one can accuse me of not feeding this child. The only things she likes more than being held is eating. She is slowly working her way up and off the charts, weighing in at a healthy 12.5 pounds (and steadily gaining). I thought breastfed babies were supposed to be smaller than their formula fed counterparts?? Not my little cupcake!