Tuesday, February 1, 2011

Answers to treatment questions...and a few random thoughts

My first random thought is about Lila and her balance.  Lila's progress is always slow and steady,  nevertheless, we have seen an increase in her motivation over the past 6 months.  She is becoming more daring and wanting to test her balance often.  Last week Lila was walking with her parallel bars in the living room, when she decided to balance without holding on... multiple times!  It was very exciting for Matt and I, and Lila too (oh, and I think Nora clapped for her on the side-lines)!  She has also been trying to stand up by herself in the middle of the room...not holding onto anything.  She immediately falls, however this is the focus that I see her having following her treatment.  She will finally have the chance to stand up to this CP "monster", which is something that seemed impossible a month ago.  Thank you!

Look at that focus!  She is trying so hard :-)

Since our post about Stem cell facts, we have gotten a few more great questions that I would like to answer.

The main question is...
How are the stem cells injected?
There are multiple ways that the stem cells can be administered.  The first, and most common, is via IV in the hand or foot.  This is safe and effective, although the doctors are concerned about losing too many stem cells before they actually get to the brain.  There are 8 systems that the stem cells have to pass through before entering the blood brain barrier.  This translates to the possibility that the stem cells will get "stuck" en-route before getting to the brain.  That all being said, there have been many success stories by using this method, and if it seems like the right thing to do for Lila as we get closer to the treatment, then we will certainly move forward!
The second method is a lumbar puncture.  This is VERY effective for spinal injuries, and also gets the blood to the brain directly through the spine.  This means that the cells do not have to pass through the 8 systems to get to the brain, in effect making best use of the cells that we have.
Lastly, a new method is being used where a catheter is placed directly into the carotid artery, which leads the cells directly into the brain, passing through the blood brain barrier before the cells are even injected.  There is promise in this method, however it is not 100% safe for children.  Little kids arteries are not always big enough for the catheter, which adds another risk.  This is the most effective method for CP patients, however we will not be taking this route for Lila.

The second question is.....
When are you planning to do the treatment for Lila?
Well, before this past week we weren't 100% sure.  Now that we have thought it through, the plan is to go down to Southern California the third week in June to meet with the doctors, and have the treatment the following day.  Lila is off school for four weeks between June and July, which will give her time to recover from the treatment and get used to the new happenings within her beautiful self.

Which doctors are we going to work with?
We are very close to making this decision.  Matt was feeling like we needed to talk to a few more parents with CP children who have gone through the treatment before moving forward.  We now have a list of 6 families to talk with, and will open those doors within the next few days.  Keep checking in for the final decision :-)

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