ELEVEN MONTHS

Yikes!!

Can you believe we are one month away from this kid's first birthday!!
Hard to believe some days.

Maddox is doing well. He weighs 16+ pounds, is around 27 inches long, and even has rolls and chubby cheeks.
He is rocking on his hands and knees, and really
using his body more and more. We are working hard on crawling and have a goal to have him crawling well and learning to walk in the next 6 months.
His therapists just did an evaluation, and he is at a 7 month old level
for gross motor, an approximate 6 month level for speech, and a 9-11 month level
for fine motor. So apparently we have a little work to do, but he is coming along.
The exciting thing to me is that he is basically age appropriate for fine motor, which really involves his brain and understanding how things work, cause and effect, etc...
The crawling and walking will come. I am sure the speaking and eating orally will come too, but that is really going to require some serious effort and time. Our insurance now won't cover speech therapy, so we are trying to work around that and see if they will cover "feeding" therapy. It's really the same thing at this age, but it's just semantics. If we call it "feeding therapy" it is more likely that it will be looked at seriously and covered. We're crossing our fingers. Our occupational therapist does do some oral motor therapy, but we need a bit more intensive help. It's so interesting what the insurance company won't cover and why. You'd think that eating by mouth and preventing major speech issues would be the choice they would make, but apparently not. Regardless of how difficult it is to deal with the insurance company's arbitrary ways of doing things, I am pretty darn grateful to have insurance.


Exciting news though, we have started bolus feeds!!!! Bolus feeding is how normal people eat...a large volume of food, then wait for several hours. Except with Maddox, and any child who has been on continuous feeds basically his whole life, transitioning to bolus is a LONG process. Right now we are taking his hourly amount, doubling it, and then giving him an hour off. So instead of 40mls per hour over 20 hours a day he is getting 80mls in an hour and then he's off for an hour, on an hour, off an hour. It is annoying, but it's a major step for him, so we are excited. He is still on continuous feeds at night, which is helpful. It will most likely be a few months until we can get all of his calories to him in day light hours. The idea is that bolus feeds will also help him with oral feeding. He has never really felt hungry because he was constantly being fed. In order for him to really have a desire to eat he needs to feel hunger. I am nervous for the day when that happens. He is going to wig out!!

Maddox is in the throws of stranger anxiety and has really started to give people crusty looks if they get too close. His physical therapist hadn't been out for a while due to his surgery and a few other things, so this week he just howled as she was trying to work with him. He is pretty resistant to people trying to make him do things. The kid is feisty.

He has about three weeks left to wear his helmet, and he is only going to wear it at night for the rest of the time. His head looks loads better, not quite the same shape as his siblings, but pretty normal. I am so grateful to be nearly done with it. One more thing to check off the list. We are making progress.

(first hike)

This probably sounds strange, but it finally feels like Maddox is a permanent fixture in our home. There have been days when both Jeff and I wondered if he'd make it, or if he did, in what capacity. I think we have finally been able to view that life can be pleasant with him and that we are not always going to measure time by doctor appointments or procedures. I know that this is most likely just a lull in the storm, but we are going to take advantage of it, and just enjoy what there is to enjoy. Last Sunday was the first time in the past year that going to church as a family and just being there really felt normal. I'm not really sure how to explain it, but it was almost like finally opening the windows to let a breeze blow through after being boarded up for months. I felt like myself. I liked it.



Maddox really is such a joy. He's so snugly, smiley, and giggly. He's very curious, and is somewhat of an adrenaline junkie(he loves throwing himself backwards with little or no warning to those holding him.) He is determined and passionate. He teaches our family daily about important things. He gives great slobbery kisses and just melts his mama. He has started trying to sing, which is adorable, but has very little resemblance to actual singing.
He watches everything around him. His eyes are glued to Keyan, Brynna, and Tracen as they run around and play and he laughs more for them than anyone. He has enviously long and dark eyelashes and perfect dimpled hands. He has finally moved from 3-6 month clothing to 6-9 month stuff. Simple pleasures. We are just so grateful to be at this point.