The last week has been crazy and busy. Dacotah enjoyed two more days of preschool, and made progress both days. We told him bye on Thursday instead of sneaking out, he looked right at us and matter of factly says "bye". His teacher sent photos and messages on him deciding he would try painting with his classmates but would need his special chair! It is made of wicker and is great for his sensory! He is talking more at home and saying at least 1-2 new words a week! The speech therapist says he is definitely not "severe" anymore.
Sunday we tried going out. He did great in the restaurant, did okay in the car but ran and screamed in the mall. Not sure if it was too much stimulation or what but he was not a happy shopper. He may be 2.5 but let me tell everyone he can destroy a room in five minutes or less. Daddy gets cranky because he never gets to stop picking up. Mommy says forget it until after he goes to bed. Makes clean up easier!
We changed his medicine to a topical that's applied to the bottoms of his feet after he goes to sleep. He is sleeping much better and he is more interactive during the day. On a super positive note, we have confirmed this multiple ways but he is no longer breaking out if we touch him with milk. Life is so much easier! We can skip eggs but milk is on/in absolutely everything. So far with just touch he is no longer breaking out. However, if he eats a bite (we tried under doctors supervision) he still vomits within 2-4 minutes. :( We think as his sleep builds up his immunity will get stronger and he will "outgrow" both. Please keep praying!
As I'm typing this we are on our way to UVA for the dental appointment and the feeding/speech eval. Yep as parents we are both nervous. I will update the post and publish it once we are done.
Okay sorry it's been another week since I started the last post. Life is crazy and super busy. UVA went well, it actually went better than expected. Dacotah does have to have dental surgery but it won't be until November 22! He does not have to have all of his teeth capped in fact only 5-6 are any concern, but this eval was done with four adults holding him down to see what they could see. The dental is caused by his genetic disorder and not lack of dental care (despite not being able to brush) the dentist said Klinefelters have dental issues even with the utmost dental hygiene! *makes me feel like a better mom*
The feeding/speech evaluation went great as well. He is now 9-12months delayed in speech putting his speech at the 18-21 month range!!! Woot woot go Dacotah! The sleep is MAKING A HUGE difference in his alert level and his willingness to talk more!!! We are going to do a follow up with them on Nov 21st just for updated progress.
He has adapted well to preschool and enjoys going. We have had a few tears but his teacher Ms. Monica is fantastic at redirecting and comforting him!!!
This past Monday Physical Therapy came to our house (Pat or Pam, I am horrid with names) said that we need to add PT a minimum of twice a month. She has also advised we consult Orthotics for ankle braces. She was so helpful with providing knowledge to let me know what we could expect with Klinefelters. He walks on the insides of his feet which bow his knees outwards so when he walks it's not like a duck per se but that's how his hips move. As he grows taller super fast it would put more stress on his ankles, knees and hips, so we need to correct the alignment as soon as possible.
The topical Visteril is working great, there isn't any meltdowns on taking medicine orally, and I just attach it to him once he goes to sleep!
This weekend we are going to see Uncle Wes, Aunt Ashley, and cousin Caleb and try doing a football game at Duke. Do I expect he will make it through the game, nope. Thankfully we have access to a calm down room that has the game on a huge tv, should we need it. Let's go Duke!
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