I was born in Florida…No that’s too much of a beginning.
Let’s start with today.
It’s Tuesday which means that it is CBRS therapy day for Clark.
Clark is almost 2. He just learned to sit up, eat and drink by mouth, crawl, and is working on reciprocal movements of his arms and legs to learn to climb. He has been successful at climbing on the couch even though he is trying to utilize both legs to stand instead of the reciprocal movement. This creates bad habits like toe walking. We already have a toe walker in the house. We don’t need another one. Clark was born 7 weeks early and spent over 3 months in the NICU. He came home with a gastronomy tube (g-tube) to learn to eat. He went NPO around 4 months due to nasal regurgitation which put him at risk for aspiration. He has multiple diagnosis’s including hypotonia, a rare chromosome 10 duplication, GERD, and DGE. He was just cleared for drinking because we switched his care to UNC and they don’t thicken for penetration without aspiration. He is currently in a tube weaning program, but he won’t drink the formula. I don’t blame him. Elecare is nasty. He does love tea though. No judgment.
Calories are calories for a tubie.
Clark has the most beautiful curly hair, which needs to be cut. He is inquisitive and a little explorer. We are not sure how a child that Army crawls can make so much of a mess by exploring. Since he relies on me so much, of course he is a mommy’s boy. His favorite words are bubba, dada, kii-kii, and chicken.
Clark does three therapies right now and we are adding two more. He sees a lot of doctors and I’m constantly in a battle with Tricare.
Anyways, today is Community Based Rehabilitative Services. CBRS is a fancy insurance name for play therapy. His therapist will be here around 11-11:30. Right now he has a fill-in therapist because his regular one is on maternity leave. So he has to get used to a different person which is not his strong suit.
I need to ask this therapist if she can switch days because PT needs to move to Tuesday, so I need her to move to Monday or Thursday. Preferably Thursday because Joshua, the 5 year old, will change to OT on Monday. Are you confused yet?
Clark also has feeding therapy on Friday and we are adding OT and Speech. I’m not sure when I’ll have time to eat…Which is a bad thing because I like to eat and I already have to see GI for loosing weight. If you knew how much I weighed you would be very mad. Trust me, being this skinny is not healthy.
Before any of the therapist’s arrive here I have to get Joshua off to school, Clark hooked up to his morning formula, clean up the kitchen and today take folded laundry up to the rooms. I, also, need to take out the trash.
Instead, I am in my room writing this and watching Clark do his feed while drinking my second cup of coffee.
So I’ll need to power clean before therapy. After therapy give Clark something to eat, put him down for a nap, finish chores, remember to eat, and put the massive Turkey in the fridge so it’s ready on Thursday.
Oh I have presents to wrap too.
And more laundry.
And Joshua has TKD today.
Joshua is a different story. Maybe for tomorrow since he has OT/feeding therapy.
Yeah both my kids have feeding therapy.
Here’s a cute picture of Clark. He was helping me with the dishes. It’s also on my Instagram. 🙂
And here’s a picture of him in the NICU taken by Capturing Hopes Photography. He just had blood drawn so there’s not many photos that day of him being awake.