Accepted!!!!

Caleb was accepted today into a clinical trial at Duke. This has been my obsession the last four weeks to get Caleb into this trial. The (extremely nice) office of the Dr. conducting the trial has received more phone calls than I can count, a letter, documentation from me and ViaCord. Those of you who used to work with me can probably imagine my intensity in getting this done. Well today, at just around 3:00 I got a phone call and….. He is accepted. They are even going to get him in soon (Feb 24th). He has to get blood drawn on Tues, so it is still reliant on those results but they foresee no problem and told us to book our plane tickets…Its really kind-of surreal!

The trial is an infusion of his own cord blood (which we banked) to treat cerebral palsy. This is one of Caleb’s diagnosis, I don’t tell many people this diagnosis b/c unless you are in the medical world, its hard to understand. Caleb is not your typical CP kid. His neuro-development doctor has diagnosed him with mild hypotonic Cerebral Palsy. It is a less common form of CP that makes your muscles ultra lax (low tone) Caleb has been able to overcome 90% of this with therapy but the stuff on the inside is harder to fix with therapy. This is why he has such severe reflux and can not drink any thin liquids (we still thicken all of his fluids) and has the malacias (floppy airway).

The study is in early stages, but it’s an extremely low risk procedure where they will infuse Caleb with his own cord blood in less than 20 minutes; hook him up to IV fluids for two hours then we are released to the hotel.

Our baby boy has a busy few months, after Duke, we are in process of being scheduled to been seen by the Aero-Digestive Clinic at Cincinnati Children’s in March. We will end up being there initially for about two weeks, then follow-ups / possible therapy more regularly but just day trips. They presented him (his chart) at their weekly mtg last week and they think that they can help. They want / think that they will need to do a ton of procedures on him, but in the end they think that they can help. My hope is that since Caleb is getting this infusion in Feb then going to Cinnci in March that 2 things will happen 1. The procedure list is cut in half , which is likely b/c Caleb 1000% does not match his chart and 2. hopefully we will see some positive effects already from Duke and the swallow study will look better….which will make the test/procedure list get cut based on the chart also.

A huge potential opportunityis that the therapy that may be able to help trigger Caleb's throat to swallow better (Vital Stim) is also in clinical trail stage (for kids) at Cinnci and if they think it can help Caleb they will be able to do that on him.

Caleb has a busy couple of months ahead of him but at the end of it he will have had some of the best doctors that you can find look at him and I have a feeling he will be will on his road to 100% recovery, if he isn’t already there :). Say a prayer for him!!!