Friday, September 10, 2010

News, and more news again

Dear friends,

I am feeling fragile today. As the doctors continue to give us more news over the last couple of days the only thing it seems to reveal is how little they know about these things and how they turn out. The MRI went fine, Madeline handled it really well. We got the results, which were of course (wait for it)…..inconclusive. The gist of the report was that there was the possibility of evidence of a “hypoxic ischemic injury” to part of the brain, which is to say that part of her brain may (or may not) have been deprived of oxygen and may (or may not) have been injured as a result. This means they will watch her and see. Other than that, it means nothing. The MRI also revealed a (possibly) normal Pituitary gland, one of the things they were looking for. It also said that her optical nerves were “equivocally mildly hypoplastic” which is medical terminology for “might or might not be slightly small which may or may not mean anything”. I wonder how many of us have equivocally mildly hypoplastic optical nerves and just don’t know it.

I opened an email today with the subject line “Fred’s last breath”. Fred was a good friend of mine and was my guardian when I was younger and lived near Seattle. He has been battling Lou Gehrig’s disease (ALS) for the past few years. The email said it was a very peaceful death and that Fred had finished his work. Although I haven’t spoken with him recently I miss him already, he was a great man. I now have to figure out if another memorial can fit into this life I am now living.

The geneticist came by with more reports. They finished a micro array and although they expected nothing new, they managed to find it. I haven’t read the paper on this new syndrome, but there are 50 known cases of it. Once again a wide range of possibilities can occur. Symptoms range from blindness, mental retardation, weak muscles (might not be able to walk or eat and swallow), lung disease, and premature death to no symptoms at all. What is one supposed to do with information like that? Lisa was at the hospital to receive the news and took it quite well. The doctors seemed concerned for her well being as she got the news but she assured them she was fine. Of course I received the news moments after reading the email of Fred’s passing so I didn’t do so well in that arena.

A new song we heard on the radio has very meaningful lyrics to us:

Do you wonder why you have to,
feel the things that hurt you,
if there's a God who loves you,
where is He now?

Maybe, there are things you can't see
and all those things are happening
to bring a better ending
some day, some how, you'll see, you'll see

Would dare you, would you dare, to believe,
that you still have a reason to sing,
'cause the pain you've been feeling,
can't compare to the joy that's coming

so hold on, you got to wait for the light
press on, just fight the good fight
because the pain you've been feeling,
it's just the dark before the morning


I believe there are things that we can’t see in this situation and I know that God will bring all of this around to a better ending some day, some how. So, pray for us once again. Pray mostly that God would take care of everything. Goes knows Madeline intimately, He knows her body inside and out and He knows the outcome already before it has happened. Pray that God would choose to heal Madeline and we can soon take her home. Pray that she grows up to be a wonderful girl and a blessing to all that know her. Pray that we can rely on His spirit to get us through this storm. And pray for peace for Lisa, Me, Madeline, Macy, Miranda, and Molly so we can all be still in His presence. Thanks again for all of your prayers and support and encouraging notes, emails, and posts they help us each day.

Lisa & Shanker

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