We have done a lot in the last two weeks. We went to visit uncle Wes, Aunt Ashley, and baby Caleb last weekend. We had a great time. The drive down was pretty rough from the state line to their house but overall it was okay.
mommy did have a moment of sadness when I realized just how much he should be saying and doesn't. But I also saw just how much he does do that just a few months back he couldn't/ didn't do. We went to the train museum and he of course loved it. Both kids love trains but Dacotah shakes with excitement over and over again. But guess what he now points and says look!!!!!!!!!! Eeekkkk. Later Saturday evening we went to the Duke vs. Wake Forest game (this was Dacotah's second game). Dacotah did good about 3 minutes into the game but then he wanted to walk and run around the concession stands. I am thankful for his backpack monkey. He stayed outside until the end of the first quarter and his daddy took him inside the Players Lounge so he could run and play while daddy watched the game on the big screen. I offered to switch out at halftime but daddy said they were both comfortable and to enjoy the game with sissy, Ashley, and Caleb outside. If you had told me four years ago I'd love football I would say you were crazy, now I can't wait until Saturday's to watch both TN and Duke play. Unfortunately Wake Forest won and Duke lost. After the game we went inside to visit Uncle Wes and even though it was loud and a lot of strange people Dacotah stayed calm! Another plus. He interacted and played with Caleb when we got back home, they had so much fun and love one another a lot. We left early Sunday to come back before the sun headed West. Dacotah rode the entire five hours back with barely a whimper.
Dacotah had OT and Speech this week. We get to keep his speech therapist Katie (the other one is named Katie also, but he related so well with this one so we requested to keep her even though the first Katie was coming back from maternity leave). Katie is very excited to see him trying to talk more! This week we tried putting him in underwear because he kept taking his pullups off. I came home from work and said "Dacotah do you have paw patrol" he nods his head yes and then gets excited and says "mommy, look"!!!!!!!!!!!!!! He said two words without prompting!!!!!!! I cannot begin to tell you how amazing that is to hear... Oh wait you already know that :) He's trying and hadn't given up so that's a great feeling.
His preschool teacher also notes that other than his speech he seems as normal as any other 2.5 year old she has seen. When we first put him in preschool we weren't sure how it would go I knew how he was at home, when we would go out, and how he was in a structured environment and honestly she and I were both wondering how it would work. I'm thankful for the leaps and bounds he is taking, I don't care how he's done it, I'm just thankful. I'm thankful that he tries to interact with his friends, that he is trying to talk, and that he is making progress. He still has moments when he isn't quite sure what to do but he figures it out.
He's playing peek a boo and he's chasing his sister and loves being chased! His eye contact has increased exponentially. His sleeping is not the greatest but I'll take 80% as a huge step forward. His immune system is still growing and he is no longer breaking out from a cooked egg!!!! So every small step we are making progress!
I found a Klinefelter's support group for kids, it has been so full of useful information. If I were coding his diagnosis the Klinefelter's is most than likely the reason behind his speech delay and is confirmed the reasoning for the low muscle tone and over pronated feet. (We see the orthotics specialist next Thursday to get his feet measured for braces). He still has moments where he doesn't like touch but is more towards a normal two year old in that area.
I don't care if it's a crawl ahead one day at a time, I can see the overwhelming progress he is making, the eye contact and the interaction that at one time none of us knew for sure if it would ever happen! He is making progress and we will keep pushing forward one day at a time!
Saturday, September 17, 2016
Friday, September 9, 2016
The past week and a visit to UVA + another week!
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!
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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