Friday, June 29, 2012

Update on Luke's MRI

Summer arrived for good here in Arkansas last week. It's been hot for a while, but now (like most of the country) we've had triple-digit heat with heat advisories most days. Around here, June through August usually brings miserable heat and humidity - September and the start of football is when the relief comes as the temperature slowly begins to drop. On Fridays the boys get wet with the sprinkler during recess at school, but today it was even too hot for that! They only got 15 minutes (instead of 30) outside this morning, and by the afternoon it was just too hot for them to be out (103 degrees today).

Luke's MRI results came back and everything looks fine. There was one small area which probably was a small brain bleed (which we never knew about) during his first few weeks, but it is not causing any problems and is nothing to be concerned about at all. No sign of any chiari malformation. Just like all of Luke's other tests, we're happy that nothing serious was found (and not having to find the best hospital for a head/brain surgery) but once again are left without an answer or explanation of why he won't eat and what we should do to fix it.

As we've said before, Jack and Luke have come through so much. Every time we are at the hospital for a clinic appointment or feeding tube change, we're reminded of how lucky we are. If Luke is never able to eat, we can live with that. It won't be easy, but we have learned to adjust and are thankful that every serious condition we have tested for has come back negative. It's taken almost two years to get through every procedure and test that all of our doctors and specialists have recommended. Since no physical explanation has been found, we are ready to start the long process of overcoming the psychological reasons for Luke's oral aversion - lots of steps and details that we'll share in another update.

The boys have had many ear/strep infections that started last fall. This spring both had tubes placed in their ears and the ears have been much better. The strep infections have continued at least once a month. Monday Jack had a follow-up appointment at the ENT clinic (with our favorite specialist at the hospital) to check his ears. We brought Luke with us and talked about our battles with strep. Dr R was great, looked at both of them, and agreed with our thoughts. Both boys will have their tonsils and adenoids removed on Tuesday, August 14th. Yes - it will be a terrible couple of weeks, but we'd rather only have to get through it once.

This doesn't happen very often, but they do love each other and sometimes show it

 Painting and playing with chocolate pudding in the bath

Monday, June 4, 2012

MRI For Luke

We have been busy on vacation seeing Ken's family in South Carolina and a quick trip to the beach! Luke is having a MRI tomorrow (Tuesday 6/05) to check for a brain malformation. We have to be there at 9:30 and the procedure should start around 11:30. He will put to sleep and intubated by anesthesia so please pray that all goes well. He has always done great being sedated (knock on wood!) but every time he goes under it is a risk. The MRI should last around an hour and then we will go to recovery. We will hang out there for just a little bit and should head home late afternoon. Please pray that he does well and whatever God's answers are will be revealed. I don't know if I want him to have the chiari malformation or not. I will be honest.. I am a little pessimistic about Luke and his tests. I get frustrated about not being able to have answers and whenever I get a little hope that something may be found, it turns out to be nothing. I am going into this test just asking that God will give us answers--even if it is that nothing is found. There are different roads to go down with each result--some harder than others but all with the same result of trying to get Luke to eat and drink and get rid of his feeding tube. Please pray for Luke that all goes well, for this tired and frustrated mom, and for his daddy too! Thanks!!

Here are a couple pictures from our trip (more to come/ click to make bigger!):

Playing with cousins
Silly Faces!

Luke with Mommy
Jack with Daddy
Cool Boys!
Wagon rides with Grandma
Luke playing guitar with 2-Daddy (great grandfather)
Jack with GiGi (great grandmother)

4 Generations!

Telling Uncle Sean a story
Watching TV with Aunt Laura