Day 1 at Kaufman

The day has finally arrived! After one full day of travel, and another filled with family get togethers, runny noses and upset tummys it finally came!  I’m so glad we came in a day early and arrived on Saturday vs coming in the Sunday before his first day of therapy. We really all needed that time to settle in and adjust. Henry has come down with terrible cold and has skipped two full days of naps on top of it. He has been VERY high energy and not in a good way. I was really concerned about him settling down for therapy.

Anyhow, it was so surreal that we were actually going. I had been nervous for some reason, I guess it’s a nervous excitement.  I didn’t eat much all day Sunday.. I was convinced I had food poisoning or a bug, but I think I was just really all worked up. I wish I wouldn’t be like that. I guess I was so nervous about putting all of this time, emotional energy and gobs of money into it and it not being worth it or not working out somehow. Well I can already tell you that everything is exceeding my expections!  I feel really good about working with Nancy and I think she is going to get a lot from Henry.

Our appointment started at 10:30. We arrived a little bit early. The play room when you enter is lively and fun and Henry made some friends right away. There was just a really great energy in there and he was so stimulated by everything. Maybe a little bit too much today actually, he had a great time just sprinting up and down the hallways and screaming at the top of his lungs.  But amazingly enough once it was time to get into a chair and sit down with Nancy, she really kept him focused.

Nancy and I sat down alone initially, talking about his medical and developmental history as well as where he is at now with his speech. This part took about a half hour followed by his evaluation. She explained he would be seated at a table and she took some time to gather some toys he might like.

He usually doesn’t like being buckled into a chair, or confined in any way for that matter. But she was so quick to offer new and exciting toys coupled with enthusiasm for his efforts that he quickly forgot he was strapped in. We were happy he was able to demonstrate for her all of the new words and sounds he has been able to repeat lately. Nancy had wanted us to work on tense vowels and dipthongs before our arrival and we’ve really tackled that these last couple of months and have had success. This means he comes into this four day intensive with a much bigger repertoire of consonant and vowels.

I sat in the room with them and Chris watched through a two way mirror. I think tomorrow I will be joining Chris and we will see how Henry does without me closeby.  Henry loved Nancy’s wind up toys best I think. She was able to go through 3-5 cards before offering each toy. She also just found all kinds of opportunities through play to practice words and even a few 2-3 word phrases! She did some testing on his receptive skills and he did very well with that too. I have seen her therapy sessions on video before and so this was exactly what I had hoped for. She is so FAST and high energy, I got exhausted just watching the session. Henry’s stamina and focus surprised me, but I know this has everything to do with Nancy. That is why we are here after all!

We sat down after the evaluation and spoke with Nancy again. She gave us some feedback on what she thought of Henry. She confirmed CAS with Henry, but expects really great progress with him. She feels like he will catch up with his peers at some point through intensive therapy. It’s good that we got an early start! She said he did everything she wanted him to do throughout the session…go Henry!

We briefly spoke about OT, Henry’s sensory issues and his tremors. He starts OT sessions tomorrow.  The tremors she was concerned about. I of course have discussed these with his pediatrician and his developmental pediatrician over the past year, both of whom thought seeing a neurologist was unnecessary. I was considering going over their head and seeing one anyhow this past spring when magically his tremors seemed to have disappeared. This was around the same time he was making great progress with his motor skills and coordination through OT so I assumed there was some sort of link there. A few months passed with no tremors and now they have started up again for the last month. Some of the tremors are intention tremors, some are not. As previously posted, in talking to a couple of OTs/PTs they felt it could be related to his vestibular issues. I thought this was a good answer. Nancy mentioned in her 32 years seeing patients, she has seen some children with tremors, but all had some sort of neurological component/reason for it.  She strongly suggested seeing a neurologist. I agree with her. I think this was something I was hoping would just go away and wasn’t a big deal… and maybe it’s not but it’s really up to a professional to decide that. I’m not sure I can take another diagnosis…it seems everytime we see someone, another one is added to the list. But it’s the right thing to do.

Tremors aside, this Kaufman Clinic visit is going to continue to be amazing. I can feel big improvements coming for Henry and I know it was the right thing to do to make this trip. I am so exhausted and need a nap… but I’m looking forward to tomorrow already.


3 thoughts on “Day 1 at Kaufman

  1. Awesome news! So happy that Henry has an excellent prognosis and things are going well so far. Keep us posted.

    Also, I totally agree with going to a neurologist. Might as well cover all bases, right?

  2. Thanks Kerri… will definitely keep you posted. And yes, it’s time to cover all the bases. You know the other doctors I’ve asked made me feel like kind of an idiot for even asking about it, like I was an overprotective first time mother or something. I hate when I let them make me question myself. I should have followed my instinct on that from the beginning… hope all is well with you!

  3. I can completely relate to the feeling of exhaustion after days at the Kaufman center! We’re finished day four and have actually decided to stay another week. Digging hard into my energy reserves to persevere as Nancy’s therapy is so effective. Thanks for a great blog post!

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