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!

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.

xoxo

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.

Monday Morning Brain dump

What a busy weekend for our family. It started with a physical for me and a lovely dtap vaccine. My arm is still killing me from where the vaccine was injected. I feel terrible for my two babies who endured this much pain in their early years of life.  Next, we had Julia's 9 month check up. These well visits cause me so much anxiety! I also feel terrible for having the feelings I do, I love Hayden so much why am I worried Julia will be like him? Being like Hayden would be wonderful since he is an amazing child however, I do not want things to come as hard for my baby girl.  Miss Julia is growing up so fast, nine short months have flown by so quickly.  She has finally doubled her birth weight now weighing in at 16 pounds 10.5 oz and 26.5 inches long. She has mastered many things her big skill now is army crawling, which Julia is incredibly fast.  The doctors said Julia seems to be developing great the only two things she isn't doing yet is getting into a sitting position on her own or pulling to stand.  Instant panic set in I began asking questions why is she not doing this yet? Why do I always think about what my children are not doing? Is it because that normal childhood experience was taking away from me with Hayden? Why am I scared of Julia not doing those things? Hayden is wonderful, Hayden is a rock star, Hayden is determined, Hayden is the happiest child I know, and Hayden is perfect.  I surely want Julia to be perfect but honestly what is perfect. Perfect has so many definitions and my perfect may not be everyone else's perfect.

After Julia's visit I took her to daycare and off I went to my monthly Partner's in Policy Making program. This program has been much more than I ever expected. I applied for this program for a couple of reasons:  to learn about resources for Hayden and networking. What I did not expect was to meet some fabulous people who  have become my friends. Friends that I realized that I need in my life.  They are parents of children with various disabilities such as Autism and Downs Syndrome. Despite their children not being impacted with the same disability as Hayden we can all relate to what is going on in our lives. Our children are close in age, which makes it nice because we are on the same path in our lives right now. I look forward to seeing them once a month and I am eager to hear all of the news that is happening in their lives. I am blessed to have met them and can see us staying connected even when we graduate our program in September. This month I had to cut my session short because Hayden had opening day for baseball.

Speaking of opening day it was amazing. Hayden was so happy to be apart of opening day why would this day not be amazing?  We got individual and team pictures and played in our first "real" baseball game. The smile on his face just made it all worth it. Hayden loves baseball and wants to go play every day. How can you deny such a sweet boy from playing an all american game? I am thankful that I was made aware of the program and that they allowed Hayden to play at 4. I must say my son is a rock star ball player, he can hit the ball off the tee and throw the ball very well. Thank you for all the years in physical therapy for making this possible for my little man.  Wow, I  have written a ton so I will let you digest all my rambling and hope to write soon.

Testing the good, the bad, the ugly

I did not expect to be writing a post about testing for Hayden. I had made a conscious decision a few months back that we were in a place of acceptance. Acceptance that Hayden's delays had been classified as Cerebral Palsy even though in my heart, I know, there is more to it. I said to myself this precious four year old boy has been through more testing than a typical child or even an adult. I wanted to be done going through the stress and heartache of worry.  However, I am writing today to say my decision was altered in a brief instant.

Hayden had his normal follow up appointment with his orthopedic doctor at AI, Dr. Mackenzie. I really love Dr. Mackenzie he is personable, pleasant demeanor, happy, and Hayden really likes him. I wish some of Dr. Mackenzie's PA's had his bedside manner, heck some other doctors I see could use it as well. The one thing I love about Dr. Mackenzie is his optimism when it comes to Hayden. He always has such a bright outlook on his future progress with walking independent. Dr. Mackenzie provides me with so much hope!  I also can say he is not a doctor to just recommend testing, so when he asked me to perform a test on my son I know it is with good intentions. So, this leads me up to my post we are having an MRI performed on Hayden's spine. Hayden has really gained in strength especially in the trunk area that causes his greatest weakness. So far he has a typical developing sister, a cleaned brain MRI, negative results for every genetic disease possible to test for, and a clean bill of health from cardiology. Right now Hayden is a child causing the great doctors at AI to scratch their head? Why can't Hayden stand and walk on his own? That is the million dollar question, if anyone can tell us this I would be grateful.

With a heavy heart I agreed to this test for my son. I decided if Hayden was going to be sedated again, that I only wanted it one more time.  I emailed his neurologist and asked if she wanted to repeat his brain MRI.  Here we are counting down until his procedure in May, a three hour test. I am having the feelings of panic, worry, sadness, and fear all over again. Watching your child be sedated is the worst thing to have to go through, at least from my point of view. Thankfully, my husband will be there with me. I could not face that alone. I cannot stand to watch my child who has so much life to live be put to sleep. It is scary and I know I will cry again. I know I will be a nervous wreck waiting for him to come out of the 3 hour procedure. However, I do know I am at the best place to be for this test at AI DuPont Children's hospital. We are very blessed to have such a great hospital here in Delaware.

Baseball was a success

I am happy to report we were able to participate in our very first baseball practice on Sunday. Thank you weather for holding out for my little man to play.  Hayden was all decked out in his Phillies gear since that is his team name. We have not officially gotten our team uniforms so what better way to get ready for baseball other than supporting our favorite MLB team.

We arrived at the baseball field and Hayden was so excited to be at the fields. He took off running in his walker   because he could not wait to play baseball. My husband is a buddy this year since it is Hayden's first year. We were nervous as to what to expect so we did not want to send him in unprotected.  We were greeted by our coaches Lisa and John. They are so great and Hayden really liked them.  Coach John started playing catch with Hayden and to their surprise Hayden has a good arm. Thank you to all the physical therapy Hayden receives he is able to throw a good 3ft +.  Words cannot even describe the pure happiness I felt for my son. Hayden was proud, he was happy, and most of all he was a normal four year old boy playing baseball. I do not think there is anything better than being able to watch your son play baseball.  I am in awe of my little man and cannot wait for our baseball season to begin.

A little rant about me.....

I spent some time recently with some pretty fabulous parents of kids with special needs.  We each have our own challenges and joys in our lives.  We know that raising a child with special needs is hard and rewarding at the same time. We also know that finding time to be someone other than a special needs parent is also hard. I like to think that I have found the perfect balance. I like to say I have figured this journey out and can conquer it all. However, I also realize that I need to give my self a break. A break in saying it is alright that I do not have all the answers, a break to be myself, a break to be just a wife, a break to do something for me and not feel guilty about it. I admit I struggle with this feeling of guilt. I find myself thinking I could have done this better or done that differently. When do I just say, it is okay! When do I accept that I need time to work on me?

I have been researching literally for a month about loosing weight. I know I need to shed these pounds to feel better about me. I know this will make me a better mom and wife, but yet I can't commit.  I found a million reasons why I haven't started.

1. I don't have time
2. My sinuses have been acting up
3. I rather spend time with my kids & husband
4. I rather spend time relaxing
5. I rather spend time sleeping
6. I don't have time
7. I think of everyone else but me
8. I don't have time
9. Doctor's appointments
10. I don't have time
11. Have I said I don't have time
12. Work

I want to go back to weight watchers, but then I feel guilty about spending money on something I should know how to do.  I want to start running again, but then I feel guilty that I could be doing other things like cleaning my house. I want to start taking Zumba classes, but for the reasons I mentioned above I just do not go and do it.

Tomorrow, I have decided in my head that I am going to go take a Zumba class even though I feel guilty. At least, it will be a step in the right direction. Here is hoping I will not find an excuse as to why I did not go to Zumba Saturday morning. I wish I could find me a Bob Harper from the biggest loser to motivate me and get to the root of what is in my mind. For now, I will use Hayden's blog as my outlet every once in awhile. I guess we could say it is my own therapy that I sort of need right now in my life.