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Friday, August 31, 2012

One week post discharge update

It is hard to believe it has only been a week since we were discharged from AI Dupont Hospital. My head is still spinning and going in a million directions. I am still trying to wrap my head around all that has happened with Julia. It amazes me how life can change in one split second. I have become so absorbed with all of Hayden's medical needs that this situation has struck me out of no where. Slowly, I know things will return to normal. Right now life seems so crazy, but I truly am hopeful once early intervention starts things will calm down.

Early intervention came to our home to see Julia on Thursday. Wow, what a different process it was this time around. I came into the Part C program knowing exactly what it consisted of. However, I still had questions, will Julia qualify? Those questions were quickly answered with a yes. Given Julia's medical release of post viral cerebellar ataxia she will qualify until she returns to her previously mastered skills. Again, this has been so hard for me. I am having a difficult time separating Julia's ataxia from Hayden's. I have only known how to be a special needs mom to Hayden. I am still figuring out how to manage both children with various needs, how to balance doctor and therapy appointments. Because I tend to be a little type A I feel like I need to have this figured out already. I struggle that I do not. The wonderful therapist at AI are trying their best to reassure me that Julia is going to be okay and that Julia is different from her brother. Only time will allow me to believe this. I know logically they are right but my brain will not shut off the worry.

Julia has been doing really well. She is crawling and pulling to stand. She still struggles with maintaining balance and trying to cruise. However, she is trying so hard. She is so strong willed that I know she will figure it out again. She really is not a fan of physical therapy, not that the therapist are not wonderful she does not like help. My baby girl has always been so independent and I hope this independent personality will provide to be a benefit in her recovery. We have had two pt sessions and one ot session. Next week we will venture to see her big brothers neurologist. I don't even know what to think or feel about this visit. I want her to look Julia over and tell me she is going to be okay. I want to know if Julia is going to experience any setbacks from this temporary condition. I want to know if Julia maybe has low end of average muscle tone. Most of all I do not want to put my little girl through anymore tests. Her big brother has gone through so much and she went through so much recently. I do not want to hear lets run a test for this or that. Somehow, I need to figure out how to approach this visit differently. I know I will figure it out, but today I do not have an answer.

Hayden started back to preschool this week. He was so happy to return to school and play with his friends. He has grown up so much this last year, which is bittersweet. I love that he is gaining some independence but it saddens me my little boy will be a big five year old! That seems so surreal.  He is talking so well and trying so hard to walk. We are eagerly waiting his results of his vestibular testing and what that is going to mean for his future and educational goals. It will be so nice to have some explanations to his delays. Although, the explanation will never allow me to understand why things happens the way they do. Why it happened to Hayden. The only explanation I have is he was meant to be apart of our family just the way he is. He was meant to give me strength that I did not think I had, and he was meant to help others. Boy that little guy brings a smile to my face everyday and to many other people. Hayden is also getting very excited to play soccer, which his daddy is helping to coach. He thinks that is pretty neat most days, other days he says its silly that daddy is going to be coach. I know he will enjoy the daddy son time like he did during baseball.

I am still so thankful for all the amazing people that have supported me during this time. I think everyday just how lucky I am to have so many people stand by our family. I truly hope everyone knows just how the small little things helped me and continue to help me overcome this new challenge. Everyone will always have a piece of my heart and gratitude.

Until my next update...

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