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Reese’s Story

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Latest Journal Update


We're home. This will be a rambly, tired, let's get this on CB tonight kind of entry... I forget how much work it is to be in the hospital. We have many things we do at home that streamline our days that are not allowed in the hospital, for good reason, so there's lots of extra thinking to be done. Dr. D is so much more hopeful than I am. He always has a plan and always thinks we can make things better. He was very very happy with where R is at during the day both on his EEG and just in general. He thinks that some of the irritability we're seeing is boredom or that R is just communicating that he wants something different. That makes sense, but it's a challenge to find things that make R happy. We have some ideas, but it's hard, in our small house, to find things that involve movement which seems to often be the solution. We had a massage therapist come and work with him and he LOVED it, so we're going to try to find someone to teach us some massage things and even try to get R in for more regular massages (perhaps we can finagle a few regular massages for the mom too). Dr. D thinks the crying is because R is sad, not because of some other weird brain thing. Dr. D had an interesting take on the rash and thinks it may be stress related. With increased interaction and activity, more energy is utilized which can cause more stress. We're going to start keeping a bit more documentation about things to see if we can see some patterns or trends. That is not something I love to do. Data collection is not my favorite.

The main reason to head to an overnight at Children's was to try a mega dose of benzodiazepines at night to see if that would help R's days. The mega dose did not change anything other than put R to sleep more quickly.  Dr. D was not happy with what is happening with R's brain in between REM sleep.   This is when we see/feel more seizures when we are with him at night and his EEG reflects that. We're doing some med changes, increasing one and adding a short term steroid to start. We'll be checking back into Children's in 3 months for another overnight EEG to see if things have settled down. We've been having some trouble with R falling asleep in the evening, so we got the go ahead to give him a big benzo dose if it's taking too long for sleep to arrive. 

I appreciate Dr. D's hope. I have said before that he walks the line between reality and hope expertly. He usually has some story about a patient who he says is like Reese and ends up having some semblance of productivity in his or her life. We share stories about our kids and have very honest discussions about R and where things are going and are at. Leaving an appointment with Dr. D always makes me feel so much more positive about where we are at, but I am not nearly as optimistic as he is. He has worked tirelessly to help R have the best life he can have. I truly feel that in other hands, R would not be where he is at. We are closing in on 10 years with Dr. D and that is an astounding thing to me. 

It was a good trip to the Cities. The alopecia diagnosis makes me feel better than what it could have been, but still makes me a bit anxious about what might be around the corner. Reese hasn't ever done anything simply and I worry about other autoimmune things cropping up. Dr. D gave us a plan and some things to change. I always feel better when we're trying something new or making changes, especially when R's ups and downs have a bigger range. There's a lot more going through my head tonight, but I will leave it at the information we got and the things we plan to do. Thanks for checking in. 

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1 Comment

Sharon Calvin
By Sharon Calvin
The new picture shows him more alert than some others. Does he interact at all with head shaking yes or no ever, or other signs of knowing what's going on around him. I'm thankful you have good doctors and others that are helping you.
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