Trinity Update for Thursday

By -

As I sit here typing I can glance up and see Trinity sleeping peacefully in her fancy hospital bed. We were able to hold her quite a bit this evening, so she is pretty relaxed. I think it helped me relax a little bit too. I don't think I always appreciate how taxing this whole situation is. But God is good and He gives me strength to run the race. I know that I would not be doing so well if I didn't have His peace and strength. Holding her helped too, and talking to Autumn was great this evening. We talked and cried a little. I think that about once a day or so both of us have to let it out. We try to stay in the present because worry doesn't actually help, but it takes effort to stay there sometimes. And holding my precious baby girl helped too.

I didn't mind that she was sleepy, instead I was able to enjoy the fact that she was holding my finger and playing with it a little bit for about 45 minutes. It was a little piece of heaven for about an hour.
It was a little bit of a tough day to swallow on the diagnosis front. We met with Dr. Bettis, who is one of the premier neurologists on the west coast, only to discover that Trinity has him baffled. He and the pediatrician tossed ideas back and forth for a little bit, only to shoot them all down. There are still some more tests to run, but we're running out of things to look for.

The results from OHSU for the metabolic disease tests are complete, but we haven't been able to hear what those results are. The lab called while the on-call pediatrician was in the middle of a procedure, but when he called the lab back they told him that the guy that he needed to talk to had left for a conference or something. They wouldn't discuss the results without this particular guy being the one to do it. So we wait until the morning on the lab results.

They were going to do another lumbar puncture, but elected to wait until the aforementioned lab results came in.

So we remain in a holding pattern. Trinity is getting better little by little, but not quickly enough. Thank you so much for your prayers and thoughts, we feel them more than you can possibly imagine.
Love,
Aaron, Autumn and Trinity



Trin and Dad playing

Comments

Post a Comment

Popular posts from this blog

Waiting For a Miracle

By -
Image
As many of you know, Trinity is in the pediatric ICU at St. Luke's Regional Medical Center in Boise, Idaho. She's been having seizures but as yet there is no diagnosis aas to what the underlying problem might be. Autumn and I are learning a great deal and I am getting a crash course in ICU medicine. Trinity has been sedated since Monday morning about 2am Mountian Time. She is on a ventilator, so the sedative is to keep her from fighting all the tubes. One thing we have learned is that we don't have control of this situation. It's hard because I don't want my daughter to suffer. I don't want her to have permanent damage from this. I want my daughter back because I miss her terribly. But I have to let all of that go and trust that God has our best in mind. I have to because I can't do a single thing to help her right now. So I pray and cry a little and sing to my baby. Autumn is doing the same. We have been incredibly blessed to have support from all over the
Click here for the rest of the story...

First Scoop...and a monkey!

By -
Image
So it's been a crazy couple of weeks for us, which makes our lives about the same as yours. We have, however, been able to get out and do some fun things. This weekend, one of the highlights was walking into town to get Trinity her first ice cream cone. Her uncle Rick gave her money on her birthday for this, so we're finally getting to it. It was the perfect day for it! As everyone knows, you have to approach an ice cream cone very carefully. You have to study its patterns, learn where it hunts. Only then can you move in for the kill... Or you can just grab it and bite it! It was really amazing how well our little girl did with her first cone. She took good bites and even wanted to share. After the first few bites she wouldn't take any more until Autumn and I had take bites ourselves. Very generous if you ask me. I think she gets it from her mother... There really wasn't even very much mess. Mostly around the mouth area. We had prepared for the worst, even to the point
Click here for the rest of the story...

More on the kid...

By -
Image
I get bored pretty easy. I get tired of the same old thing. But I discovered something. I don't get tired of my wife or daughter. Do they get on my nerves sometimes? Sure, but I never get tired of them. We went to Boise last week (or was it the week before?) for follow-up appointments for Trinity. We were there for two days because Trinity was scheduled for a follow-up MRI and they won't see her at the neurologist's office the same day as the MRI. I can see why; she has to be put to sleep for the MRI because it takes over 45 minutes and she has to stay still. Trinity can't stay still for 45 seconds, much less 45 minutes! Here are some photos from the trip: Here's Miss Smiley-Bug waiting for her turn in the MRI machine. She was having fun crawling around and trying to pull on as many dangling cords as possible. She's so much fun to be around. She barely even cried when they put the IV in her arm. She did fight a little, just because she doesn't like being hel
Click here for the rest of the story...