Wednesday, June 3, 2009
In the Works
We may have our diagnosis on little William soon. The doctors are thinking he has a pseudo-Usher disease, known as a blind-deaf disease. Of course, we are hoping it's not that, but instead we're still hoping it is a mitochondrial issue. We are definitely moving forward, though. Yesterday we got all of our paper work faxed to the Pediatric Diagnostic Clinic at the Mayo Eugenio Litta Children's Hospital in Rochester, MN. The head of pediatrics is looking over everything and they will be calling us in 3-5 days with our appointment date. We were told they are now scheduling for September, but we are hoping that when they read William's information he might get moved up on the list. We'll see. One of his doctors is also checking into another possible avenue (The National Eye Institute in Washington, D.C.) for testing of this particular disease. I'm not sure which route we'll take if both things work out, but we may end up having to go to both places. The NEI will only test for the one disease and if it's not that we would be back at square one.
Tomorrow is a big day. We start driving to the city for therapy, ugh! Okay, I'm half-joking about the ugh! While I don't look forward to the drive, I do believe this is best for William. And our entire family would miss not seeing Krissa! We feel like she's become a part of our family. For an even better thought...tomorrow William gets his walker! We are very hopeful that it will help him gain strength and confidence for walking, hopefully on his own one day!
Here's an update on the 3 diseases that the Pediatric Neuro Ophthalmologist wanted to test for after getting the results of the ERG: they've already been tested for and he is negative for all three! We are very glad about that - none of them had a halfway good prognosis!
Some of you have been asking how you can pray for us, so here's what we need:
First, on the practical side, lodging. The Ronald McDonald house does not take reservations, but is set up on a first-come, first-served basis. Also, they only allow 5 people to a room. This means that for us to stay there, not only do they have to have 1 room open, but 2 adjoining rooms at the same time, or we will have to get 2 hotel rooms. Since we aren't sure about the length of our stay, which could range from 3-10 days, this makes things difficult to plan.
Second, strength for our little boy and for our family. William is doing well right now, Mommy is still kind of struggling. We are so thankful that we have the Lord to lean on - I don't know what we would do in other circumstances. How do you handle the uncertainty of the future when you don't know Who holds that future? As much as we love our little William, we find peace and comfort in knowing that he is in the hands of the One who loves him even more.
Third, wisdom in all of our decision making. Right now, especially with the decision on whether or not to drive our own van (which has given us trouble for quite some time) to MN, or rent one. Also, wisdom in deciding which hospital to go to first, or if we should pick one over the other, should that opportunity arise for both.
Last, and certainly least on the list, we need the initiative to continue as normal with our schooling. We are fortunate that all of our girls are pretty well self-motivated and a good deal ahead in their schooling, but we don't want that to cause us to get lax. I have been struggling with keeping up with grading and planning, but I am thankful to have a lot of help.
Thank you all for the prayers, words of encouragement, and the phone calls to check on William. I know I post information here, but that is only because I can't possibly call everyone. We are always grateful when you let us know that he is on your hearts as well. We appreciate all of you!
"For My thoughts are not your thoughts, neither are your ways My ways, saith the LORD. For as the heavens are higher than the earth, so are My ways higher than your ways, and My thoughts than your thoughts. For as the rain cometh down, and the snow from heaven, and returneth not thither, but watereth the earth, and maketh it bring forth and bud, that it may give seed to the sower, and bread to the eater: So shall My word be that goeth forth out of My mouth: it shall not return unto Me void, but it shall accomplish that which I please, and it shall prosper in the thing whereto I sent it. For ye shall go out with joy, and be led forth with peace: the mountains and the hills shall break forth before you into singing, and all the trees of the field shall clap their hands." Isa 55:8-12