Vestibular dysfunction, Maybe?

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.

My baby girl turned 1!!

I know the majority of this blog centers around Hayden but I do not want to forget my littlest love Julia. I cannot believe on July 10th my baby girl turned one. What an amazing quick year it has been.  Julia definitely beats to her own drum. She chose to come into this world when she wanted too, six days late and she still has that same personality. I love her personality and what she has brought to our family. She really has completed our family.  She has helped her big brother in so many ways, probably more ways than she could ever imagine. We had a small party with family on her birthday and she loved every second. I even think she realized it was her special day. Julia even enjoyed a cupcake, her very first one, she devoured every last crumb. Now, I leave a little reminder of just how special my baby girl is.

Dear Julia



On Tuesday, I watched you become a toddler right before my eyes. My precious baby is growing up so fast.  I still remember July 10, 2011 like it was yesterday. My water broke at 5:30 in the morning and we were on our way to the hospital by 6:30 am. You were so ready to come into this world that my contractions were coming on strong, your daddy was worried we would not make it so he ran a few red lights, but we safely made it to the hospital. I tried very hard to go without pain medication but mommy could not take the pressure, luckily we had a wonderful nurse tell a little white lie to the doctor so we could get some pain relief. It was just enough to take off the edge. Within an hour you arrived, at 11:32 am a beautiful baby girl weighing 8 pounds 2 ounces was in my arms. I worried for so long how it would be possible to love two children at once , but from the moment you looked into my eyes it was pure love. I knew right at that moment you would change our lives forever. We spent some time getting to know each other until your big brother arrived. Hayden was so excited to meet baby Julia. When he attempted to hold you, my heart grew so much bigger. My two babies together forming a bond that will last a lifetime.

I have watched you develop into a curious little lady. You already think you are four with some of the things you try to do. You have done things with ease, learning to sit, feed yourself, crawl, stand and even cruise. You simply amaze me with all the little things you have accomplished your first year. What you may not realize is how you have inspired Hayden. Hayden loves you so much, and he wants to do everything with you. It includes so many things that your big brother has a tough time doing but amazingly, you have given him the confidence he needed to try things he was too afraid to do. Hayden simply adores you and for that I cannot tell you how happy that makes my heart.

I hope we will remain close and that you will always love your mommy. I know there will be times when we do not get along but I will always love you. Love you for who you are, love you for all that you have accomplished, love you for providing your brother with inspiration, and love you for completing our family. Happy first birthday baby girl. I cannot wait to enjoy more birthdays with you.

xoxo

Love-

Mommy

A little bit of everything

I realized I have not written in about a month where does the time go?  Hayden has been a busy little guy. He finished his second year in preschool and is already back in summer school for three weeks. He also ended his baseball season in the beginning of June. Hayden loved baseball so much and we are very sad the season is over. However, he was very pleased that he received a trophy on his very last game. We proudly display the trophy with his Special Olympic medals on a shelf in his bedroom. Every night Hayden must say goodnight to his trophy. He has been having so much fun already this summer. Pretty much every night he is outside playing with his neighborhood friends.  This honestly melts my heart. He use to ask every day to go outside and play with his friends. I was so worried the kids next door would not want to play with him because he cannot run around but to my surprise this just was not true. They come and ring our doorbell and ask for Hayden to come outside to play. I love that he has friends and I love that he can be a typical four year old boy playing outside at night. He might not be able to run around and chase them but boy can he crawl fast and play tag. He can certainly stand in his walker and play basketball. He can play in the sandbox with them and blow bubbles. I cannot tell you how much this makes my heart happy. I am very fortunate that children today have compassion and do not see a difference. They just see Hayden who is funny and they do not mind Hayden cannot walk. They gladly explain to children that do not know Hayden that he has a "walking problem" but it is OK because he is our friend. I love love love this.

Now, onto the doctor dilemma. I know I last posted we were thinking of taking Hayden to John Hopkins. Well, after much debate and chat with family I decided NO. NO more testing. I think what got me started on the testing bandwagon again was his doctors. I know they mean well, but they make me feel like I have not done enough. Like I should be doing more, testing more, researching more but in fact I need to be doing just what we are doing. We are being a family, we are going on vacation, we are playing outside, we are swimming, and we are just taking one day at a time. Yes, Hayden still does not really have an "official" diagnosis. Maybe one day we will figure it out, but for now we know Hayden will accomplish whatever he is meant to accomplish. A diagnosis would not change that for him. We have one more major appointment this month. We are going back to Dr. O'Reilly because Hayden now is of age to test for vestibular dysfunction. I feel like something is "off" here he just does not have any balance. He does not know where his body is in space. This would be at least helpful to know this is what is causing his balance concerns. I do not know what it will mean if we find this out but it certainly will be helpful. Well, sorry for the late catch up and brief post. I will try to write more again soon.