Tuesday, September 13, 2011

Time for an Update on Andrew


Andrew seems to be doing pretty well after a rough spot in July. He must have had a major growth spurt in their somewhere and toward the end of our trip to Colorado he was complaining of a great deal of pain, even to the point where he wouldn't walk and wanted to be carried. I noticed that he seemed to be limping/falling more too. I called his physical medicine specialist and we immediately began adjusting his dose of baclofen, which is for spasticity management.  It was a little scary for me but over the course of a few days we went from 1/4 a pill a day to 2 entire pills a day,  That's an increase of 800%! But he soon began to feel much better and was sleeping and walking again, Thank Goodness!

The doctor was able to work him into her schedule and saw him not long after we got home.  His spasticity in his left ankle has dramatically worsened over the last 6 months.  He was once able to get 15 degrees of movement past neutral but now he cannot flex his ankle that direction at all and is developing a contracture there.  There are really only two options, botox with serial casting or tendon lengthening surgery.  Ideally you push this surgery off as long as you can because it can only be done a few times so we have no choice but to go for another round of Botox and casting.

We saw good results last time and hopefully will again. Although I still have a lot of reservations about injecting my baby with neurotoxins which haven't been studied long term and are off label for this treatment, but I'm going to trust his physicians and in God to do the best for Andrew.

So in October we are scheduled for a sedated procedure, which will be a huge relief for me because in the past he was always awake and suffered some emotional trauma through those ordeals, requiring 4 adults to restrain him despite him taking verced to "relax" him. YUCK!

A week after the injections he'll start his weekly casting process for 6-8 weeks. I'm thankful this won't be during the summer so he doesn't miss out on the pool, but considering he brings home a bucket of sand in his shoes from school everyday I'm a little worried about how we will manage preschool 5 days a week. They don't really have a sand box they can tell him to stay out of, it's more like half the playground is a beach/sand hill.  This will be interesting!

Thanks for loving and praying for my little survivor!

10 comments:

LaRhesa said...

Praying for Andrew.

LaRhesa said...

Praying for Andrew.

Willy's Auntie said...

Praying for sweet little Andrew. He is such a courageous young man. I know that God is/will use him in a mighty way!

Allison said...

relieved to hear they will sedate him this time...that should be much easier on you. Maybe you could put a legwarmer over the top part of his cast to help keep the sand out at school.

Erica said...

Will always be praying for your family. So sad to miss you the other weekend..hopefully we will get to see you and all the kids this Fall. What a cutie and God Bless You through all your decisions and trials! I know they are loving school..really, 1 more year til Kinder??!!

Erica

Lynn said...

Trying to get caught up on what I missed...and now I'm in tears. I hate thinking of him having to go through this again but it hurts even more that he had to be awake last time! I'm so happy that he'll be sedated!
Still here praying in Seattle!
Isaiah 26:3-4 Thou wilt keep him in perfect peace, whose mind is stayed on thee: because he trusteth in thee. Trust ye in the LORD for ever: for in the LORD JEHOVAH is everlasting strength:
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Lynn said...

Life in this world can look so bleak at times. But the victory is ours through Christ! Put your trust in Him! Praying!
1 Corinthians 15:54-57 So when this corruptible shall have put on incorruption, and this mortal shall have put on immortality, then shall be brought to pass the saying that is written, Death is swallowed up in victory. O death, where is thy sting? O grave, where is thy victory? The sting of death is sin; and the strength of sin is the law. But thanks be to God, which giveth us the victory through our Lord Jesus Christ.
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Lynn said...

What a tremendous comfort we have in the wounds of Jesus! Praying in Seattle right now!
Isaiah 49:13-16a Sing, O heavens; and be joyful, O earth; and break forth into singing, O mountains: for the LORD hath comforted his people, and will have mercy upon his afflicted. But Zion said, The LORD hath forsaken me, and my Lord hath forgotten me. Can a woman forget her sucking child, that she should not have compassion on the son of her womb? yea, they may forget, yet will I not forget thee. Behold, I have graven thee upon the palms of my hands...
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Lynn said...

Still continuing to lift up prayers.
2 Corinthians 1:3-5 Blessed be God, even the Father of our Lord Jesus Christ, the Father of mercies, and the God of all comfort; Who comforteth us in all our tribulation, that we may be able to comfort them which are in any trouble, by the comfort wherewith we ourselves are comforted of God. For as the sufferings of Christ abound in us, so our consolation also aboundeth by Christ.
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Lynn said...

Know that I'm still here praying!
Psalms 40:1-4 I waited patiently for the LORD; and he inclined unto me, and heard my cry. He brought me up also out of an horrible pit, out of the miry clay, and set my feet upon a rock, and established my goings. And he hath put a new song in my mouth, even praise unto our God: many shall see it, and fear, and shall trust in the LORD. Blessed is that man that maketh the LORD his trust, and respecteth not the proud, nor such as turn aside to lies.
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