In this case no news is good news. Christian is doing great. Aside from a few short-lived kid colds, he's had no major sicknesses and I couldn't be happier. No throwing up, no nothing!
We had a great Thanksgiving and that holiday is one that reminds me how thankful I am for a blended diet. Everything we ate for Thanksgiving, Christian got to have in his blend. It's such a blessing to be able to share these traditions with him in our own way.
But, wait, Christian didn't just get to experience having a Thanksgiving turkey, mashed potatoes and cranberry sauce through his tube, he got to taste them, too! On Thanksgiving he actually got to have some sweet potato, mashed potatoes and gravy, whipped cream, and ice cream (his favorite). He wasn't crazy about the mashed potatoes, which didn't surprise me because he likes things with a lot of flavor. But he liked the sweet potato and, of course, the ice cream. He didn't just taste it either, he ate a good bit of it, too! He's doing so well with taking things by mouth. Food has definitely become a motivator to get him to vocalize and make some choices.
We've also started to work with his speech therapist at school on a new communication system that will teach Christian how to respond consistently using a "Pods" system. We'll be working that out and beginning that next year. I know he has things to say we just have to figure them out! He's not the one with the problem, it's us!
Yesterday we went to the dentist and he did great! No cavities or decay. That brushing at least three times a day with the Frazier Water Protocol is definitely paying off. But now Christian is toothless! He lost his four bottom teeth (and his adult teeth are right under the surface) and now his two big top teeth are gone. My theory is that his gums had been swollen and taking over his teeth for a while. When we increased the brushing, his gums stopped swelling and released the hold on his teeth a little and out came his teeth!
Other things we learned at the dentist:
Wheelchairs make the best dental exam chairs.
We also asked about a palate expander. Because Christian doesn't use his mouth to eat regularly, his mouth and palate did not form correctly and the roof of his mouth is really high and narrows toward the airway. This malformation could cause problems down the line with his breathing as he gets older. So a palate expander will hopefully open that narrow area up more, allowing more air flow as he grows. We have no breathing or apnea issues NOW, we're just planning for the future. We have a consult with an orthodontist next week.
Because Christian had a dentist appointment I decided that afterwards would be a mom and Christian date. So we skipped school and headed off to the mall for some Christmas shopping! Part of one of Christian's Christmas presents was to go to Build A Bear and design his own bear. We all know Build A Bear has a ton of accessories for the bears but a few months ago I found out they have little wheelchairs!!!
So you can guess what will be under the tree for Christian, right?
It was a fun experience, though. I went early in the day so we were the only ones there. The staff paid lots of attention to us and spoke to Christian directly, calling him by name, and saying, "Bye, Christian!" as he left. Those things are important. Christian got to pick his bear by feeling them and looking at them and he made definite choices using his little smiles, his active hands, and his voice. And then you know the part where you have to step on the pedal to make the stuffing go? Well, we just rolled over it to make it go!
Sometimes I never know how these experiences will go. Will he respond? Will he like it? Will it be a bust? But this experience turned out better than I expected. He actually did make choices and look at the animals and it's going to be a great Christmas present for him!
So that's what we've been up to! I have a few more updates and thoughts on my mind to come but as far as Christian goes, he's doing great!
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5 comments:
Awesome!! So glad you guys have been doing well and enjoying the holiday season!
Oh, what a heartwarming update. You have such an energy and warmt, your writing is beautiful and the Christian we see in the pictures comes alive in your words. He's not just a photograph, he's a boy with a wonderful mom!
Glad to see you back, Shauna! I wondered where you were! So glad Christian got to have some of his Thanksgiving dinner by mouth! That's great... I have a question - I know that swallowing is an issue - is that the main reason he is tube-fed? Also, can his brain register taste? Like would he make a face, or react in a negative way if something you fed him by mouth was not pleasing to him? Sorry for my ignorance, and I hope you don't mind my asking.
Madam Queen -
Christian has retained all of his senses. The part of the brain that controls this is fully intact and functional. He sees but has cortical visual impairment, hears above average, smells, is very tactile, and tastes. He makes faces when he tastes something new. He won't participate or move his mouth if he doesn't like something. And if he does enjoy something he will move his tongue, salivate, and make sounds if he wants more. He has even made great progress in moving his tongue toward his lips if he wants to taste Something. He is tube fed because he can't take large amounts of food, enough to sustain him, by mouth. But he can swallow, move food around, and protect his airway. There are many ways he can communicate, he smiles, he cries with pain or irritation, he can hit buttons to make toys go, he can push with his arms, pull, grab, and he loves ice cream. His body just doesn't work for him. But trust me, he is very aware and reactive in his surroundings in his own way.
Thanks, Shauna- that is wonderful! I think smell and taste are great stimulants and I'm so glad he can enjoy these things. You are doing a terrific job! I've seen his smile on your website - it's precious.
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