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Monday, April 23, 2012

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.

Monday, April 9, 2012

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.

Wednesday, April 4, 2012

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.