Tuesday, August 6, 2013

Here's to therapy, surgery, and surving it all!



If you follow my blog you know that Tucker was tongue tied at birth and had an anterior revision. As time went on I began to develop suspicions that he was also suffered from a posterior tongue tie. Last week he saw a pediatric ENT who confirmed my suspicions. He ordered a feeding evaluation to determine which parts of Tucker's tongue/mouth/throat were working properly and those which were not. Yesterday we went to visit the SLP who discovered additional issues, including a weak jaw (possibly related to his brachycephaly,) weak bite, lack of lateral tongue movements, lack of tongue muscle definition, raw throat (from swallowing food whole,) and possible aspiration of food. She has ordered 6 months of feeding/swallowing therapy to develop the muscles in his tongue 3 times a week. At 2 months into the therapy Tucker will be reevaluated by the ENT to schedule a posterior tongue tie revision. Then continue the remaining 4 months of therapy to learn how to use his freed tongue.

This was very overwhelming news to process. No one wants their child to have something wrong. The therapist assured me that I had done everything right by what I was feeding him, how I was feeding him, and recognizing there was a problem. Of course, that was nice to hear, but at the same time hearing something is wrong with your child is a tough blow. She encouraged me to continue offering him a wide variety of foods and textures, as I have been, but to change the way in which it is presented to him. From now on he is only allowed to have pieces of food that are safe to be swallowed whole. So while he can continue to eat peaches, pineapple, okra, carrots, lima beans, etc they need to be diced to about the size of a grain of rice. His food needs to be presented in different locations on his tongue. He is no longer allowed to spoon feed himself as he slurps rather than eats, so now I need to spoon feed him putting direct downward and backward pressure on to his tongue. My biggest obstacle is going to be getting past my fear of gagging him. The therapist assured me that gagging is good and choking is bad, unfortunately I have a fear of doing either.

<Warning a slight bit of negativity>
Last night I really struggled with the "why me?" and "why my baby?" questions. Between his helmet therapy and this new therapy, I will be traveling 300-400 miles a week. Even though I was told that none of these problems could be avoided and it was nothing I have done wrong, it felt like a sucker punch to the gut.
<End negativity>

I will tackle these new issues head on and I vow to do all the at-home exercises as directed. I know that there is nothing better than early intervention so I will tackle this with the same positive attitude I did when he began his helmet therapy.


Thankfully there are positives in all of this, Nick and I have the insurance and resources to address and resolve the issues. Due to the postponing of surgery there is a better chance that Nick will be home to endure it all with me. Also, because of the therapy his tongue will be stronger and he will learn to speak properly the first time around rather than having to relearn things later on.

<Here comes the bragging>
Tucker was such a good boy at the therapist yesterday. I was so proud. He had already had a screwy day because we had gotten up early to drop my Mama off at the airport and he only had one nap. The therapist told me to just allow Tucker to get familiar with the room. I set him down and he walked right over to the high chair like he knew exactly what he was supposed to do. He allowed her to put different tools and foods in his mouth and was a perfect gentleman the whole time. When he was finished eating and it was time for her and I to discuss things he played quietly with the toys in her office. I was one proud mama! This morning he did very well with the exercises during breakfast.

<More bragging, change of subject>
Tucker's potty training is going fantastic. He is the smartest little boy I know. Last week after we had been to the zoo and he had been tortured (twice!) at the ENT's office, when we arrived home he walked right back to his potty and sat down. Then the next morning he peed, as he usually does in the morning, but then he continued to sit there and did all of his business. Diapers are quickly becoming a thing of the past. On a few occasions I have taken him on errands and he has remained dry. He definitely understands the process and has taken to it so well. I am very proud! Since we started potty training less than 2 months ago he has peed successfully in the potty 88 times and pooped 21 times.



<End bragging>

PS Sometimes I wonder if I am becoming too salty, perhaps maybe I am on my way to being cured like a country ham? LOL :)

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