- ...Like a pacemaker battery replacement. They say Maisy has 5-12 months left on her battery. But, they haven't seen her move! Okay, I know the technology within her body is sophisticated enough to take into account her very accelerated rate of speed. And as you can imagine, we aren't interested in waiting to see if she can make it longer on a fading battery. She is schedule in the beginning of May.
- fun news also. One of the photos of Maisy is going to appear around town in ads for Children's Health Care of Minnesota. She is going to love that! I am thrilled to know that they use actual kids with actual chronic conditions in their ads...
- ..and then there is Isaac. He had an EEG last week that did not capture a seizure, but showed strong tendencies toward them. I am quite certain that he is having seizures as he falls asleep at night and other times throughout the day. The doctor felt that the EEG was significantly abnormal and loaded him with seizure meds yesterday so that we can increase his dose. Yet another big thing in our life all on its own. It reminded of how detrimental the med error that allowed Isaac's body to get used to meds that could have otherwise been used to stop an uncontrolled seizure. Yet another opportunity to see God's protection of Isaac. Had he had a seizure during the time of the unbelievable amount of Valium he was on, there would not have been much available to us that would have been able to stop it.
..and then we are in the process of having FASD re-evals for 3 of the kids with a diagnosis of Fetal Alcohol Spectrum Disorder...and one who doesn't have the diagnosis, but needs evaluation. Just the amount of paperwork alone that was required before we went to the appointments was absolutely overwhelming. Especially since I sat there and was asked to repeat verbally all of the information that I had previously written down. It is particularly frustrating because most of the discussion took place with the child present, and for Jordan who has a particularly traumatic history, I am not convinced this that is the best thing for him. Hence, the reason I was so thorough when filling out the lengthy forms. Next time, I will request that he not be in the room--but in the moment, I didn't realize it was going to go on so long and so I didn't stop the psychologist.
..and finally, Elijah
We had a chance to have a thorough discussion with the transplant donor coordinator at the University of Minnesota. We learned that there are 3 potential matches--but none are perfect matches as defined by an 8 out of 8 alleles. The preferred match is the only African American donor..the other two potential matches are Caucasian--which is not typically how that happens. The best match is a 7 out of 8 allele match and we are told that a match like that is still considered acceptable. I just am not comfortable with acceptable. We have been advised that we need to be very flexible as we wait. The donor still needs a physical, more extensive health work ups and other tests, before we know that they can donate. They may not be able to accommodate our tentative time frame of the beginning of July. And so we know that things can change for us at any time.
As new donors are placed on the registry, they will screen Elijah's profile again to see if a better match comes along. Next week, we are going to plan on setting up a bone marrow donor drive. For anyone who is not solely Caucasian, it is free for a potential donor to be registered. That will be our target population (none Caucasian, that is) It just involves a screening document and a cheek swab to get registered. From a Mom's heart, I know that if we did not attempt to do what we could to get the best match possible for Elijah, we would feel as if we had not done everything we could have. If there is anyone out there who can help, I will keep you updated with more information soon.
So thus, the perfect storm of our life is playing out. And it is okay. All that we may have feared before, is not consuming us.
When you pass through the waters, I will be with you; and through the rivers, they shall not overwhelm you; when you walk through fire you shall not be burned, and the flame shall not consume you. Isaiah 43:2
I love that promise...and it is true.
We are so thankful That God's promises never, ever fail us...
..and that God is showing us his love and protection upon our family in ways we would not have expected. He is an amazing God who is worthy of our praise..even in the midst of the storm.
