Off to AI we went on July 11th to see Dr. O'Reilly the ENT who specializes in balance disorders. After the latest MRI and blood results I talk to Dr. Scavina, Hayden's neurologist about revisiting the possibility that Hayden has vestibular dysfunction. She agreed, that it was reasonable to seek out Dr. O'Reilly again for his thoughts. We first met with him when Hayden was 2.5 years old at the time, Hayden was too young for testing. Here we are 2 years later, still with balance issues, still with a tentative medical impression of hypotonic cerebral palsy, and still with questions. Dr. O'Reilly discussed Hayden's progress while he has made some amazing strides we are in a no better no worse situation with Hayden's balance and walking skills. Please do not think that I am taking away from all the amazing things Hayden accomplished this year, I am not, but balance and safety is such a concern. Hayden is getting older and I worry so so much what the next year brings. I worry what it will mean for us when Hayden transition's to kindergarten. Are we going to be faced with the possibility of a wheelchair? I just do not know.
Dr. O'Reilly was happy to see us again, he is very warm and inviting. I do know some vary in opinions with him, but I have found him to be extremely approachable. He reviewed Hayden's medical records and threw a curve ball at me. He said I saw Hayden's recent MRI and his cerebellum is small for his age. Imagine my shock when those words came out of his mouth. All I could think of is really? No one has mentioned this to me before? He said I do not know if that is the true reason for Hayden's delays but could be a factor. Yeah, you can say that again, while that does not change how amazing Hayden is it does explain some things. I guess a fresh set of eyes on Hayden's medical records is important. Hayden has a good bit of specialist, cardiology, neurology, orthopedics, ophthalmology, ENT, Genetics and his pediatrician. All have different opinions, all have different specialties, and all with different approaches to Hayden's care. I love every single doctor, there is not one I would trade in. Now, if I could trade in some of the PA's I would, at times. Anyway, the point to my rambling is I wish there was a way for every specialist to sit down and review Hayden's file at once. Take an interdisciplinary approach similar to the school system to look at his file with fresh eyes and different perspectives. Look, what I learned just by seeing someone new. We spoke briefly about my concerns still and he agreed without hesitation it is time to test. We will begin our testing on 8/15. It is a pretty long day for Hayden, but I hope it brings some light into Hayden's balance instability. While, if we find out it is a vestibular dysfunction, I do not know what that will mean for us. I know it will mean different therapy but it would help explain some things for Hayden.
Now, we wait for our big testing day. Honestly, I think Hayden will have fun with some of the test. He starts out with a physical therapy evaluation. He views physical therapy as play so this should not be so bad, we then move onto the Gait Lab. This part is tricky, I do not know how they are going to get a thorough Gait analysis completed on Hayden since he is not walking independent. Dr. O'Reilly still wants to try. We have a hearing evaluation. I know he will pass the hearing screening but what we may also learn is the function of his inner ear. Finally, onto some testing that involves looking at his nystagmus, I know spinning is involved. Hayden will love this. Anything that involves swinging, spinning, rough housing, and tumbling Hayden seeks out. I think he is a sensory seeker, for whatever reason this helps him organize his body. I know that may sound strange but there maybe some sensory therapy that we can incorporate to help him. What I like most about this is after the testing the doctors, physical therapist, etc meet as a team. Finally, a team to review the assessment. I probably will not have results for a few weeks, but I anticipate the day I receive my call.
Until, we test we are enjoying our summer. Hayden has loved celebrating his baby sister Julia's first birthday. He helped decorate the house and mix cupcake batter. He absolutely loves birthday's and is eagerly waiting his birthday in December. We just finished summer school, it went by so fast. He seemed to enjoy his time there this summer. I secretly think he will miss his teacher and para's that he loves so much. He is getting physical therapy at Easter Seals on Friday, and my child is so happy to go. I mean seriously who loves pt, this boy! He cries leaving, I have this reaction any time we are there. It could be just to visit our friends in the Development department it does not matter to Hayden. He loves Easter Seals. We are also doing swim therapy again at AI, we took a little break but I feel he needs some time in the pool. Hayden is so excited to see Miss Wendy next week to swim. We will probably try to go the the beach a few times before summer is over, and count down to our big vacation to Disney this year. He is over the moon excited to fly on a plane and meet Mickey Mouse. Well, until our next post enjoy your summer.
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