|Outside Memphis Zoo decorated for Xmas.|
|Target House playground|
So, yesterday, we had an endocrine follow-up to see how the growth hormone injections were going. He is handling it fine, which actually makes me nervous. The dosage is small and when I give it some medicine backs out of the puncture wound. I hold the shot in place like I was told, and still have the problem. So, they changed the gauge of the needle and had me hold it in place twice as long, but more came out than usual. If that happens every injection, then is he even getting anything? Anyway, a bother that is important, but just add it to the list. At his audiology appointment we learned that Eli has lost more hearing, so he will have to wear the hearing aids now, he is no longer border line. I won’t complain about it, I understand that there is a cost, but still it is a challenge he will face and it makes me sad. She also said that he has impacted wax deep down, so we will need to make an appointment with an ENT to dig it out. I haven’t heard about the EKG, I’m hoping that is a good sign, and he took a pulmonary test today that I haven’t heard back from. But, the guy said it didn’t look like anything had changed.
So, today, in addition to the MRI, which is the heaviest on our minds, he had a speech evaluation, which on the surface seems innocuous. But, the testing is a good, general way to measure his cognitive skills. I am trying to keep everything in perspective and am deeply grateful for what we have, but I am disappointed that he is beginning to show the cognitive decline that we were told would come at about 2-5 years out. And, Vic and I suspected it because his grades have begun to slide. She said the decline he is showing is consistent with radiation damage. She said he was capable of understanding content and information, but the processing is slower. For example, if he were given the instructions: “Take your jacket off, hang it on the hook, sit down and turn to page 102 in your English book.” He knows how to do all of those things, but his brain would only get so far. He might hang up his jacket, and sit down, but that would be as far as he would get.
So, her findings and that of the psych
testing will be compiled and they will make recommendations (what does he need
out of school, does he need tutors, if so what kind, etc). She said there is no
way to know how far he will continue to decline, he may not any more or it
could continue for 4 more years. Again, I know there is a cost, and I am sad
about it - I just can’t not be - but I am trying very hard to focus on how to
handle it, our plan of attack instead of what is happening because I am
thankful every minute of every day for what we have had access to and how it
saved his life. I just pray for his future.
|Caleb's puppet show while we wait the 3+ hours for Eli.|
We've been having fun handing out Hot Wheels, but I tried to play an "I Spy Eli" game coupled with Facebook, but nobody has recognized him. I posted his picture with what he was wearing each morning and posted it on a St. Jude page hoping someone would recognize him and then we would give the kid a car. But, so far we've just handed them out to patients as we see them.
He came through sedation for the MRI fine. It wipes him out
a little, so we are hung out in the hotel room and watched Bubble Guppies Puppy
and the Ring, SpongeBob Christmas specials, and Muppets Christmas on TV, eating
pizza, and doing two small loads of laundry. The hot topic around Memphis today
is the ice tomorrow. As most of you know I have been working toward participating
in the St. Jude half-marathon set for Saturday. My small team raised almost
$10,000 for st. Jude, which is half of 1% of what it takes St. Jude to operate
one day. I am extremely proud of them and this would have been the first half
for a few of us. Yes, would have been. I am depressed tonight because the
emergency management agencies around Memphis are asking that travel tomorrow be
restricted to emergencies, yet the race is on Saturday and race events are
proceeding. The problem for me is I have the boys and now Vic can’t easily get
here. He doesn’t have the leave to take the day off so he can’t leave until
late, which makes travel more dangerous that long into the storm.
may change tomorrow, but as of right now, I will not be able to run Saturday. It
is very disappointing. It just figures because I requested that Eli’s scans be
this week so that we would be here already for the race. Well, I guess that
backfired. If I had come alone, traveling in bad weather wouldn’t be an issue
and I wouldn’t have any kids that needed to be kept for me to run. So, our
schedule has changed in that we should be done before 10 a.m. tomorrow, but I
don’t know yet if that means we will come home or hunker down somewhere here
until it passes. It just depends on how bad the weather actually is tomorrow;
maybe the forecasters are being overly dramatic.
|"I Spy Eli"|
|My shadow for the long wait for Eli to finish MRI and recovery.|