Christmas

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

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

please vote!

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

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

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

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!

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!)

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

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!

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!

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

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!

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

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!

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!

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...

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!

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

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...

Beckett William

6lbs 14oz

baby will be here next week!

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

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

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!

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!

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!

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

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

exhausted

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!

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!

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

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

Better luck next year.

17p and compounding pharmacies

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!

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

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

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

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.