I did not have time to write a post yesterday because it was a crazy day! Such contrast from a year ago.
Skyler went off to school in the morning. That has been such a great thing for him but I am also glad we waited for 4 year old preschool. Not only because it gave me more time with him at home but because of the crazy year we had and how much more crazy it would have been.
Gavyn had his 6 month visit with his nurse practitioner Neurologist, Tracy Moore. Thankfully Ryan was able to go with us and Nevin too! Everyone loves to see Nevin now at CG because of his thyroid. Any who... It was a very productive visit. Thinking of sitting in that PICU room a year ago, machines hooked up all around my baby, wondering what was going to happen and now...
She went on and on about his sitting, how well he interacted, clapping his hands ect. We talked about his gross motor delay and if he has mild CP, he could, probably does but there is no test, no for sure answer. We also talked about if you say he is at a 6 month level he is doing awesome. You have to cut off all the time he lost being sick and how long it took him to recover from it all. In most areas that is where he is at and we just have to go with it. We talked about when we he would get an MRI, what therapies to continue and possibly start, coming up doctor visits ect. Of course we even chatted about Mr.Nevin.
Before we left Ryan asked how he was doing, compared to other babies with hydro and shunts that she sees. She looked at Gav, looked at us, took a deep breath,
"To be honest... He is doing remarkable. Most babies I see who have what he has are not sitting up, they do not interact, they don't know what is going on around them. Obviously he has all of those things and for the rest we need to meet him on his terms."
Of course I cried. It makes my heart hurt so bad for those families. To have a taste of what they go through every day and know how hard it is. And also to feel a ting of guilt for the things we worry about because in the grand scheme of things he will probably be totally fine.
No guilt, girl. It doesn't matter how hard it has been for you in the grand scheme of things. What matters is that it has been hard and you and your little sweetie are still here to tell the tale. It's like a doctor told me when I was first diagnosed with BPD and feeling guilty about it... everybody goes through stressful times in their lives, some of us take a lot less to crack than others, and it's not your fault.
ReplyDeleteIt is wonderful that Gavin is doing so well now, but you need to understand that you are an incredibly strong person for having made it through all this... and maybe he wouldn't be doing so well if he didn't have such a strong Mommy and loving family to cheer him on.
Thanks girlie
ReplyDeleteSO MUCH to be thankful for!
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