kiddo update

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

six-month-old sweetie

I

love him

to

pieces!

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

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

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.