I think of myself as a fairly strong and positive person but on days like today, it's hard to be that person. Just when you think things can't get any worse........they do!
We went to Phoenix Children's Hospital for our eval. and neurological checkup today. The evaluation was first. John was a little sleepy (he missed his nap) but he still performed well:) He is 32 weeks adjusted and scored between 22-28 weeks on everything. Not bad in my opinion considering he was born at 24 weeks and had a severe brain bleed. The PT doing the eval. didn't seem too concerned. She noticed a little stiffness in his legs and shoulders and commented on his head and hand tremors. Nothing new to us. She wants us to work on sitting and reaching for toys. She thinks he'll be sitting by Christmas. What a great present that will be!
After the eval. we met up with our good friends from the NICU and their son (also a 24 weeker.) It was great to see them!
Now, here comes the venting......
As soon as the neurologist walks into the room she says, John is REALLY falling behind. Jamie and I look at each other.........what?????? Where in the world she got that info. from beats me. I told her he scored between 22-28 weeks and she said, oh I guess that's not too bad. Anyhow, John had fallen asleep so she really couldn't do too much with him so she decides to pull up the MRI from March and proceeds to tell us he should get tested for a genetic disorder and if he has one then we probably shouldn't have more kids. WHAT???????????? This came out of no where. She read this same MRI 4 months ago when we were there and no where did she ever mention a genetic disorder. She went on to tell us that his small cerebellum will effect his motor skills. I felt like we were re-living that HORRIBLE day in March when they read the MRI to us for the first time and told us John wouldn't be able to do this and that and so forth.
All of my hopes and dreams of a normal pregnancy and delivery were shattered when I delivered John at 24 weeks into my pregnancy. My hopes and dreams for my child were destroyed when the Dr.'s told us he had a Grade III brain bleed and would have long term disabilities. I have come to grips with the fact that John may have special needs and I am okay with that. He is my child and in my eyes and God's, he's perfect. I was chosen to be his mommy for a reason and I am thankful for that. But, now I feel like my hopes and dreams of having a "normal" pregnancy, carrying a baby to term, bringing my baby home with me, breast feeding, etc., have been crushed too. I know life is rough but I never imagined it could be this hard.
Sorry, for such a depressing post. It's just one of those days.
On another note, please pray for his surgery tomorrow. Pray that it is performed carefully and that the recovery is quick.
6 comments:
Jill,
I'm emailing you.
Linda C.
Dear Jill and Jamie,
Our hearts are breaking as we read your post today! You and Jamie have shown more love, strength and determination than imaginable and we can't imagine going through half of what you, Jamie and John have gone through. You are a true insipiration to us all!
Your family will be in our thoughts and prayers.
Love,
Trevor, Meghan & Peyton
You are in our prayers every night. We will say an extra one tonight.
=) Jeannine
You know by now that you can't believe what the docs say! They never thought he would achieve the accomplishments he has! You guys do whatever you did back then...it seemed to work!! And, of course, our prayers are with you!!
Auntie Tracy
Oh Jill,
I am sorry to hear that you are feeling down. I just wanted to comment to let you know that I have been where you are so many times over the past two years.
If you ask me, John seems to be doing SO awesome for his adjusted age! Neither of my girls could get on their hands and knees at 32 weeks. Not even close! Holland, who has mild CP, didn't sit up unassisted until she was about 13 months old, and didn't crawl until she was 15 months old. Eden still can't get up on her hands and knees, and we don't know if she ever will, but it matters less and less to me as time goes on.
You know, I am coming to realize that those physical milestones really mean so little in the grand scheme of things. Just like my girls, John is so cute and smiley and interactive. That is all so much more rewarding and important. Those smiles will help get you through the rough patches.
Doctors just don't know everything. It would be nice if they could be a little more sensitive, and consistent sometimes... Hang in there. You are in my thoughts.
Billie
I can so relate to this post as you know I have concerns about Kellars bleed in the cerebellum as well, only god knows what each day will bring, still doesn't help the fact that I am worried out of my mind..
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