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Thursday, August 16, 2012

Vestibular dysfunction testing, check!

Yesterday our little family except Julia ventured off to AI Dupont Children's Hospital for the anticipated Vestibular testing for Hayden.  I am so thankful Bob was able to take off of work and join us for this test, it was going to be a long day. Hayden is normally so great during tests but sometimes things scare him and he just needs daddy. So, off we went Hayden was armed with both mommy and daddy for this long day.  I have been waiting exactly two years to be able to perform this testing for Hayden. My mommy gut has told me that something has been off, immature, underdeveloped with Hayden's vestibular system and no blood test or MRI could tell us these things.

We arrived for our first appointment at 10am which happened to be a physical therapy evaluation. This test even though I dread it should be relatively easy. I kept thinking to myself please Hayden show the therapist what you got. Let them know just how awesome you are. If you have been through several physical therapy evaluations like we have you know the Peabody is dreadful. It is dreadful from the perspective of showing Hayden's gross motor skills below a 1 year old. That is often a hard pill to swallow but I try to remind myself of all the gains Hayden has made. Well, Hayden rocked that Peabody assessment! I have never seen my man work so hard and show off what skills he has. My little man even held tall kneeling independently for 3 seconds. I know you are thinking 3 seconds but really 3 seconds is amazing. Hayden also showed the therapist he could walk up stairs holding onto railings without support, walk in his walker like a rock star, and even try to help take off his shirt. I was so proud of him yesterday he could not have done any better. While I know he is not at the development level of a 4 year old I know he has improved so much. Yesterday was proof he is simply amazing and he works harder than any child I know. It was also nice hearing from a physical therapist that does not normally treat Hayden that he is doing amazing and that he has nice skills to be able to one day walk independent. I guess it just allows us to keep the hope alive that one day he will take a few independent steps.

After pt we had a gait analysis done at the gait lab. This test just essentially video tapes Hayden with and without his braces. Hayden loved this test because he could race his daddy in his walker down the red carpet. Hayden also loves being on video so this was a win win for Hayden. The best part of this test for him was picking out a cool present at the end. What did he pick?  A little blue guy as he fondly calls the little alien. We had a short break to grab some lunch but not to much since we had some spinning to do in a rotatory chair.  After lunch we decided to let Hayden play on the playground. I love the hospital playground it is adaptive and he can climb around freely. Hayden being Hayden was trying to make friends and say hello but I think the other children were a little shy yesterday. We lost track of time and had to rush to our next appointment which was in the audiology department. The testing in audiology was not for his hearing but for the working of his inner ear and various other vestibular testing. There were so many and I cannot rattle off all the technical terms. However, what I do know is one test in particular, the vestibular ocular reflex test that I have been curious about confirmed my suspicion. Hayden has a nystagmus and for those not familiar what that means is basically involuntary eye movements. Most people experience nystagmus after swinging or spinning and it goes away. Hayden's tends to continue after these types of activities which is not normal.  We discovered yesterday that if Hayden is turned right his nystagmus is beating to the left. Basically, his eyes are crossing over visual planes which is not normal, this also indicates when Hayden is upright his world is jumping. The other test that showed a slight deviation is stationary nystagmus. Hayden was positioned laying flat and we turned his head to the right and left. When his head was turned to the left we saw two to three beats of nystagmus. The physician had said the variance is not enough to determine if he is impacted by stationary vertigo but it is a finding.

The day was long but Hayden was so strong and so brave. He listened so well and focused hard on what he was asked to do. We celebrated by taking him to the Disney store and letting him pick out a gift. I know we are probably setting expectations every time he goes for testing he deserves a gift, but oh well. I think Hayden does deserve a little something special because he is just an amazing little man, is brave and much stronger than a four year old. He decided to pick some cars toys like we needed more but that is what he chose. Now, I think we have close to 300 cars however it makes Hayden smile and that is all that matters. I also let him pick the dinner menu and he requested pizza so it was pizza night in the Schlenner household on Wednesday.

Now, we wait for our results. The team gets together once a month to review all the children they tested in the month of August. I eagerly wait the phone call from the coordinator on the findings. I am thankful we proceeded down this path and now I know a little more than I knew yesterday. I know this does not change the direction of what we are doing for Hayden but it does give us some new ideas for therapy techniques and how to better help Hayden organize his body in relationship to space.

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