I have received many questions about how Courtney is doing via email and phone so I will attempt to answer them here. We are getting used to theis “new normal” slowly but surely. If there is something else you want to ask, then please leave a comment and I will do my best.
If Courtney fails her swallow test on Aug. 13 will she need surgery to place a G-tube to be fed?
Courtney had a G-Tube placed in 2002 when she was considered failure to thrive because she was not gaining weight properly. So we added formula by G-tube and were able to get her healthy again. She stopped taking liquids by mouth in 2005 because she was aspirating them to her lungs. So all liquid goes through the tube. So if she fails the test for swallowing solid foods, then yes, everything will go through the tube she currently has. No further surgery will be required.
How is she doing with her seizures?
She is still having seizures, however we are down to about one grand-mal a day. Usually in the early evening hours when her med levels are the lowest. She has been doing better with her alertness levels as her body continues to adjust to the new regimen. However, when she does seize she is beginning to turn blue in the first 30-45 seconds of the seizure. This is NOT good at all. This means she is not taking in oxygen during that time, causing more damage to her brain over time. It is of great concern to us. Everything is being done that can be done. So we take things one day at a time, one seizure at a time. God takes care of the rest.
Are you going to try the new drugs?
Courtney has had intractable (drug-resistant or hard to treat) seizures since she was five weeks old. We have been through every FDA drug treatment available in the US and some experimental as well. This “cocktail” of drugs is all that’s left and only about 20,000 adults take it in the US. 10% of them end up with aplastic anemia. The only treatment for that is a bone marrow transplant which will not be possible for Courtney. She is already pretty immuno-suppressant (low immunity to sickness) and would probably not survive the chemo needed. So for now NO to the new drugs. These will be an absolute last resort to save her life.
What will happen on Aug. 25, 2009 during the VNS surgery?
This surgery is fairly simple. The neurosurgeon will go in, make sure all the wires are good and then replace Courtney’s VNS (Vegal Nerve Stimulator) battery and get out. She will have surgery beginning at 7:30am and hopefully will be home in time for dinner if all goes well. She is a higher risk surgery because of the fluid in her lungs as well as her seizures but we are not anticipating any problems.
What is the next step with her scoliosis (curvature of the spine)?
We are waiting to see if she can have a brain/spine MRI to take a look at the spinal cord and all the muscles surrounding the curvature. We are not sure if she can have the MRI since her VNS is like a pacemaker and the MRI machine could heat the wires inside her body. This is not a good thing. So we are waiting to hear back from the VNS people with a solid answer. I’ll let you know what they say.
Why do you suppose Courtney is having all this trouble NOW?
I have no answer for this one. She has surpassed every milestone she was given. First she was not supposed to survive her first birthday, then her third, then her fifth. Now the docs don’t even mention “the end” because Courtney has always done her own thing. It could be because of the accumulated affect of the seizures, long term meds, lack of oxygen with these newer “harder” seizures. I haven’t a clue and neither does any medical professional we have consulted. It just is what it is. A “new normal” shall we say. Not to worry though, God is in control. ALWAYS!
How do you, Jerry and Jonathan do this? You are so strong!
Well thank you very much. It’s very kind of you to say. Believe me, the ONLY way we do this is by the GRACE OF GOD! He provides everything we need as we need it. We pray each and every day for God to show us the way and guide us through. Jerry and I have been doing this for almost 17 years now and it never gets easier, but we have learned to completely rely on Christ for every breath Courtney takes. She belongs to Him and when He decides the time is right, she will go home to Him. Until then, we do our very best to give her the very best life she can have. We love her so much! She is the heart of our home. I cannot imagine life without her smile, her laughter or those crazy blond curls. We thank Our Lord for the privilege of being her and Jonathan’s parents. It is an unbelievable honor to walk with them through this life. They have given us more than we could ever give them. God is good, ALL the time!
OK. That’s it for now. Let me know is you have any other questions. We are always happy to answer them. Thank you for praying for our daughter and our family. We could not do this without those prayers. So keep them coming!
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