I cannot remember the last time I left an appointment with John (especially a neuro. appointment) grinning from ear to ear. Granted, we haven't really had any major appointments since he was two years old.
Anyhow, the MRI was read yesterday......and boy was that the most perfect little brain I have EVER seen. God is truly amazing. I thank all of my faithful readers (family, friends and complete strangers) who have prayed and continue to pray for this amazing little boy of mine. If you remember, John suffered a Grade 4 bilateral brain bleed (4 being the worst and bilateral meaning both sides of the brain) and severe cerebellum bleed, when he was only 8 days old. Well, the MRI showed that most of it had resolved....minus the cerebellum which is extremely small (no surprise to us though...we already knew that.) This is just another reminder of the power of prayers. And, how awesome for us to be able to witness God's work first hand!
As far as the surgery goes, he IS a candidate. Now, whether or not we decide to proceed is still up in the air. We have spent a good portion of this year researching the Selective Dorsal Rhizotomy and finding the best doctors. We've already met with one and are setting up appointments with two others. We have even seriously contemplated heading out to St. Louis to meet with the renowned, Dr. Park (who's performed this surgery over 2,000 times.)
Again, please pray for all of us. As parents, this is a very tough decision....we know that we cannot move forward with this surgery until we are 100% confident. But, regardless of our decision we KNOW that John will continue to thrive and continue to lead a wonderful life.
And yes, I know my kids are wearing Christmas hats (in the pictures below) in September (when it's still 110 degrees out) but they take after their Momma.....and totally dug these out AND put them on all on their own!!!
John said to me, "Momma, ho ho ho...it's almost Christmas!" And with that being said, I am almost done with all my Christmas shopping:)
John said to me, "Momma, ho ho ho...it's almost Christmas!" And with that being said, I am almost done with all my Christmas shopping:)
11 comments:
Oh wow, I'm so excited for John! I myself have researched the procedure and I'm hoping one day Romy will be qualified for it. I've read so many wonderful things about Dr. Park and the hospital in St. Louis.
I'm also beyond elated about his MRI, he is truly, truly, TRULY a miracle.
An awesome God, an awesome boy, and awesome parents with an awesome little girl - living proof of the power of prayer!
Oodles of love,
Grams & Papa
jill, great news for you all! you might not know me but i "know" you from preemieblogmoms. just wanted to let you know that we live in st louis, and dr park is as amazing as you've heard/read. if you need any info on places to stay (several hotels are walkable to children's hospital, etc) let me know. i'm happy to help!
ashley
mom to avery & brooks, 24 weekers, now 4 years old
ahhstl@sbcglobal.net
I am SHAKING!! I am SOOO excited to hear the news!! I didn't know John had atrophy of his cerebellum as well. He and Carter, I tell ya, could have been brothers. Born a few days apart, due dates a few days apart, they suffered NEC the same night & surgery the next morning. Carter didn't show brain bleeds following NEC, but does have severe atrophy of his left cerebellum. I am going to be calling you!!!! I can't wait to hear about this possible life changing surgery!! Way to go John!!!
What an amazing update Jill! God has truly blessed your beautiful family. John is a miracle and an inspiration to all of us. And I am with you...it is ALWAYS the perfect time for Christmas! Love you guys!!
A beautiful brain indeed. And a beautiful little boy. Won't be calling him little much longer. 5 is the cut off :) I will never forget that 8th day of John's life...the first time I met him. God has been working some incredible things through your whole family. I am so Blessed to be able to witness the miracles. Hugs!
Oh and it looks like Jamie is the only Christmas hold out. Stay strong Jamie!!! I used to tell you to wait for Thanksgiving...now I am going to have to tell you to at least wait for Halloween!!!
Jill-
You are definitely in my prayers! You have truly been blessed by the power of God and you are so lucky to have such an amazing little boy and miracle in your life. You are such an inspiration to me and us all! You are amazing and I love to see how much you truly love your family. You have always been a truly amazing and wonderful person and I am glad that everything has worked out for you so far- John, Jamie and you will be in our prayers! Love the Christmas stuff- mine are dressing up for halloween everyday!
i know the exact feeling. i went and still going through what you already have. all the best to you, if you're for the Op and speedy recovery for John, for he is really a miracle boy.
no one understands a preemie parent like another preemie parent does.
*hugs*
Jill, God is good and has given John to you because you are too. You are a special mama for a very special little boy-- make no mistake about it. I will pray for you as you make this decision. Whatever the decision may be, it will be His plan.
Blessings,
Amanda
Awesome news about the MRI..Kellar had a CT done and his bilateral bleeds were not showing up but like John his cerebellum damage was showing, the radiologist said it was dandy walker, I was floored as nothing like that has ever came up! Kellar has none of the symptoms so maybe it was just the previous damage he was seeing? We got to see a pedi neurosurgeon in Nov... Good luck on your decision about surgery and I can't believe how big the kiddos have gotten!
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