Monthly Archive

Tomorrow is the big day! We will be discharged and should arrive home sometime on Friday. Gabrielle has made amazing progress over the last two weeks. She is walking while holding my one hand and can take steps between people or stable objects. She is able to move fairly well on her hands and knees now and she can independently get herself to a sitting position most of the time. The recovery of her left arm has been slower and she really does not move her left hand at all yet. The symmetry of Gabby’s face has improved and she is compensating well for the visual field cut which resulted from surgery. A CT scan of the head was completed and it showed no evidence of hyrdocephalus. Horray! The doctors say that normally if there is going to be a problem with CSF drainage it would have occurred by now so this is great news.

Overall, Gabrielle is a completely different child than she was 6 weeks ago. I think back to when we arrived in rehab and she couldn’t even maintain a sitting position or hold her head up straight and now she is cruising down the hallways like a little spit-fire trying to keep up with her fellow rehab buddies. I feel so much better about going home. Gabby still has a lot of work ahead of her and she begins outpatient PT first thing Monday morning. They are recommending she receive about 10 hours of therapy per week at this point which will make for a busy schedule. I am excited though to see the milestones Gabrielle can achieve with those nasty seizures behind her.

I want to thank all of our family and friends who have carried us through these last few months. We wouldn’t have been able to come to NY to get the very best care for our daughter without the help of so many of you. You have so unselfishly given to get us to this point. We pray that God will provide us with many opportunities to give as generously as all of you have given. We thank God for His mighty hand in all of this and for the amazing people He has placed in our life.

Thank you!
Kelly

Gabrielle is doing better every week. Her fevers are gone. She is walking with some assistance. She is learning to squat and stand. She is beginning to pull herself up to a sitting position. Gabby is communicating more every day. It is mostly nonverbal but the babbling is increasing as well. We have not seen any seizures in one month. We continue to pray she will not develop hydrocephalus.

It looks like we will be finishing up here in about two weeks. Two more weeks until we can be together again as a family. This has been a very long journey. A journey through a valley that has had some pretty dark spots. I wonder what God has in store for us? I know we have been through this valley for a reason and I wonder if we are nearing the end. God has been refining us through all of these struggles. He has been preparing and equipping us for something in His great plan. He led us through the darkness and I believe He will again lead us onto higher, lighter ground as changed people.

The following poem is called “And God Said No”. To me it is a reflection about why God doesn’t prevent us from passing through valleys and why He allows us to fall into pits.

And God Said No
By Claudia Minden Weisz

I asked God to take away my pride,
And God said “NO”
He said “It was not for Him to take away
But for me to give up.”

I asked God to make my handicapped child whole,
And God said “NO”
He said “Her spirit is whole
Her body is only temporary.”

I asked God to grant me patience,
And God said “NO”
He said “Patience is a byproduct of tribulation
It isn’t granted, it is earned.”

I asked God to give me happiness,
And God said “NO”
He said “He gives blessings
Happiness is up to me.”

I asked God to spare me pain,
And God said “NO”
He said “Suffering draws you apart from worldly cares
and brings you closer to me.”

I asked God to make my spirit grow,
And God said “NO”
He said “I must grow on my own
But He will prune me to make me fruitful.”

I asked God to help me love others as much
As He loves me,
And God said, “Ah, finally you have the idea.”

Gabrielle’s fever is slowly improving. They began giving motrin round the clock to help suppress the inflammatory response and now we are trying to wean her off of it. Therapy is slow going. One day you see such progress and the next you feel like you’re taking steps backward. I guess you have to gauge progress in weekly chunks and then you really begin to see the improvement.

Duff left Monday to meet up with the kids and now they are all in NH together. I included a picture above, of the 4 kids together again! Gabby and I will probably be here for a few more weeks and we continue to pray we won’t see any signs of hydrocephalus.

I no longer have a computer here and I’m presently updating on
an iphone so don’t be concerned if the updates are less frequent.

Love,
Kelly