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Tuesday, May 22, 2012

The results are in

Yesterday, I placed a call into our orthopedic doctor and neurologist for Hayden. I was waiting on pins and needles all weekend to hear the outcome of Hayden's MRI and blood work. I received my first return phone call from Dr. Mackenzie's PA. It was a brief business like call his results were normal. Whew, normal spine MRI, however I wish the staff that worked for Dr. Mackenzie had a similar bed side manner as he does. I think that some individuals in the medical community forget you are dealing with parents who are overwhelmed with what is happening to their child.  Within an hour I heard from Hayden's neurologist Dr. Scavina. She reported similar results of a normal brain MRI and normal values from his CK levels.  The CK levels decreasing were a great surprise considering they were slightly elevated in  September of 2011. The big news was the spectroscopy for Mitochondrial disease was normal. The "M" word as I like to call it was a far stretch for Hayden since all of his lactate and pyruvate levels have always been normal. I asked his neurologist again are we just dealing with cerebral palsy? She said honestly, she does not believe that is what is impacting Hayden. In my heart I do not feel like that is what Hayden's "condition" is. What I do know something is causing great challenge for Hayden's balance. I "feel" like it has something to do with an immature vestibular system. I discussed this with Dr. Scavina and we decided to revisit testing for vestibular dysfunction. Hayden is now of age where he can be tested. We have that appointment scheduled in July. I also brought up reaching out to John Hopkins hypotonia clinic. She felt it was okay to get someone else to review Hayden's chart. She actually welcomed it saying they may be just to close to Hayden's case and a fresh set of eyes would help.

After hearing the results that I honestly anticipated I decided to call Hopkins.  To my surprise the clinic is closing because the physician who started the practice is leaving the hospital. The intake secretary did tell me that all the genetics doctors at Hopkins are well versed in hypotonia and could see Hayden. Now, the question is do I take him to see yet another doctor. We have seen so many doctors. We have gotten so many second opinions is it worth the trip to John Hopkins? I am very fortunate to have so many great hospitals close by that we can travel at the most an hour to visit. I guess I will send them Hayden's medical records and see what they think. As I said before I am not sure that we will ever know what is causing Hayden's delays. Hayden is a medical puzzle. I often go back and forth between emotions. On the one hand it is nice not having a diagnosis because it allows for unlimited possibilities for Hayden. On the other hand it would be nice to have some sort of diagnosis so we can have a guide to Hayden's future. However, I keep trying to remind myself that even with a diagnosis this is only a guide.

All in all the results were the best case scenario for our family. Hayden is perfect and just the way he should be!

Friday, May 18, 2012

MRI update

After a few weeks of anticipate the day arrived for Hayden's MRI. I have been worried beyond belief for this simple procedure. For adults, it is so easy we go in lay on an uncomfortable table and get our images. However, for our children it requires sedation to complete the procedure. I think back to two years ago when Hayden had his first brain MRI complete. I was a nervous wreck, it was the worst possible thing that could have happened to my sweet boy at the time. I was there during the entire preparation process and thoughts of his eyes rolling back in his head haunted me this morning. I wondered would he react the same way? Is he going to do well now that he is older and can understand exactly what happened?

We woke Hayden up around 7:15 this morning. If anyone who knows Hayden, my boy enjoys his sleep. We surprised him today by having his baby sister Julia wake him up. He was beyond excited that Julia was in his bed pulling his hair to wake up. Hayden just adores Julia. We were out the door by 7:25ish to drop Julia off at daycare and get on the road to AI.  It seems like no matter what day it is there is always traffic, we arrived at the hospital just in time for our 8:30 appointment.  They took us back immediately and we went through the normal series of medical question and then came the prep. Hayden really liked our nurses today and was of course showing them pictures from our iPhone of Cody (our dog) and his baby sister. He even asked about his teachers this morning wondering what they were doing today. Guess, that goes to show how much he likes school :) They decided to give him versed(spelling) since Hayden really is not fond of iv's. But who is?  Once that medicine kicked in you would have thought Hayden drank a bottle of wine. He was hysterically laughing at shaking the bed post. You could not help but chuckle at your child acting a little loopy. Finally, it was time for him to receive his iv sedation. I instantly started to worry remembering just how awful it was to see my sweet baby boy go to sleep. However, to my surprise this was a different reaction. Why, I am not sure. Maybe because he is older and weighs more. I truly do not know but he went to sleep without his eyes rolling back in his head and was off to his procedure. We were anticipating originally 3 hours of a study but the anesthesiologist surprised us by saying it was only 2 hours. Well, another surprise happened it was only an 1 hour and 40 minutes. He woke up quickly and what does my four year old ask for? Not mommy or daddy but the iPhone? I think we might have to remove some iPhone time since that was his first words. He happily cooperated waiting for our discharge by eating Oreo cookies. He was in heaven.

Now, we wait. I hate waiting. I wish I could speak with his neurologist and orthopedic doctor today. I want to know are we dealing with a tethered spinal cord? Did they find something else? Has his brain image changed in two years? Or are we going to find "nothing"?  We have been on the path of finding nothing for so long that I am numb to those answers. It took me awhile to agree to repeat testing again, but I feel like what Dr. Mackenzie said made sense we need to check his spine. I trust his doctors I know they are only trying to find answers. However, this is all my little boy is going to endure. He has been through so much in his four short years of life. I decided after today's evaluation we will no longer be testing unless something drastically changes.  He has been on a wonderful path of accomplishments and I truly believe he is going to keep doing amazing things.

I want to thank everyone for their support, it means a ton to our family. Without the wonderful thoughts and prayers I do not think I would have been in such a peaceful place today. Below are a few photos from today. My brave boy before and after the procedure. I love you Hayden too much as we say every night before bed.


Thursday, May 3, 2012

Will we ever discover the unknown?

Yesterday, we had our typical follow up appointment with Hayden's neurologist. Hayden was pretty excited to see Dr. Beena (as he calls her). He wanted to show her his Phillies baseball hat and his baby sister. Julia got to come along for the ride yesterday. I was worried how I would handle two kids, a double stroller and a walker. I am giving myself a pat on the back because I did it without any flaws.

Hayden was his true Hayden self. He had to stop to talk to everyone. I literally mean every body. Patients, parents, cleaning staff, nurses, receptionist, and of course the doctors. I need to allow enough time for my social bug to greet everyone in order to make the appointments on time. We arrived on time thankfully, and surprisingly did not have a long wait. Thank goodness for small miracles!  Our appointment was pretty typical we talked about how Hayden is doing and he is doing fabulous. He is walking more, talking more, trying new things, and being a crazy four year old boy. The only thing he is still struggling with is balance and walking independent. However, that does not stop my sweet boy in his mobility because he is everywhere. It makes me happy every time I see him move, my heart just melts. Well, after all the good things the doctor discusses his upcoming MRI. I know we are looking for a tethered spinal cord however, I was not expecting to get the shock of the "M" word. Yes, you guessed it they are "considering" Mitochondrial disease. This scares me actually it frightens me. I begin asking what can cause it, is it genetic, will my baby girl be impacted. All these questions which they cannot answer yet. We are also going to repeat his CPK because it was slightly elevated with a value of 211 vs a normal range of 160. However, his genetic doctor said that is normal for children with hypotonia she told me children with muscular dystrophy would render values in the 1000's. The interesting piece of blood work is a check of his vitamin E levels. I had no idea this could impact balance, but it does.

Now, I sit and wait for our MRI appointment this month. I now worry even more that we are facing potentially the "M" word. I am trying to remain optimistic, I am trying to think to myself everything else has turned up negative this will too.  I know there has got to be something that is impacting my baby boy in a way to cause tremendous trouble with  his balance. One day maybe all the smart scientist and doctors will discover what exactly is causing these delays in my sweet boy and other children facing the "unknown" reason for their delays. I just want my baby boy to live a long healthy and happy life, I want him to be able to accomplish all of his dreams, I want him to not suffer or be in pain, I want him to have friends and enjoy playing sports that he loves so much. More than anything I want him to continue to be Hayden because Hayden is a true blessing, a true miracle, a true inspiration, and the very center of my world.