Sunday, September 2, 2012

Sunday updates

We are home from the hospital, we got home last week. 

Me, Bob, Ben, Lauren (Eli's primary nurse) and Eli are all sick with a cough and cold that just seems to want to hang on.  So that pretty much atleast sums up the adults. 

Emily ~ She's busy as heck.  She's participating in choir 2 mornings a week, silver strings (the extra advanced violin for 6th graders) one morning a week, strings 2 afternoons a week, math club one afternoon a week, and private violin lessons 1 evening a week.  This doesn't even cover all her basic classes and homework.  She stays busy.  She finally saved up enough money to purchase her own phone and now has an Iphone.  She's loving it and we love not having her friends calling or texting us all the time. 

Jace ~ He's doing service club once a month and math club one afternoon a week.  He is looking at doing some gymnastics classes but hasn't fully decided.  He's also in speech and is enjoying his new speech pathologist. 
Benjamin ~ He's doing ok with school although he's having a few issues staying on task.  We had an IEP check in last week and discussed some of the changes we were all thinking needed to be made.  His IEP comes up the end of September so we will have a much more intense talk then.  He's enjoying playing with friends after school and is also going to be starting gymnastics.

Ariana ~ She's loving kindergarten.  She's getting in trouble almost every day though as she simply can't stop talking.  Her teacher is learning the same struggles that we have.  Nothing we have done  has been able to break thru this hurdle with Ari.  The good news is she is loving school.

Elias ~ Like I said he came home last week.  We still aren't where we need to be on his Lovenox levels.  Some of his labs are looking a bit better, some not.  His red blood cells are dialated and they aren't 100% sure why.  His protein is also still low even though we've greatly increased it.  He's doing pretty good hydration wise, so that has been a definite blessing.  We met with his geneticist last week and he went over some of his labs and thoughts and such.  Next month Eli will begin some more genetic testing, that will hopefully get us some more answers.  He also believes something is going on with Eli's liver and is working closely with Eli's GI doc on that.  We also met with Eli's pulmonologist and sleep medicine doc this last week.  He believes that Eli's adenoids are enlarged and thinks that's contributing to Eli's sleep apnea.  He is sending us back to our ENT to have that evaluated.  He wants Eli back on BiPAP but wants to get this issues fixed first.  He put Eli on a nasal spray before bed each night to see if that helps some as well.  Another sleep study is probably in our near future.  Never fun.  Lastly there has been alot of talks about Eli's ferritin, iron, and restless leg.  Eli has been taken off 1 dose of his iron supplement to see if that helps his iron levels any.  Eli's issue has always been that his iron levels are ok but his ferritin is very low.  That's proving harder than expected to supplement.  We are unsure if we will have to stop the other dose as well but for now they are taking it one at a time.
Lastly we learned that Eli has an Alpha 1-antitrypsin deficiency.  Eli has the milder form "M" and "S" and his levels are barely under normal range, but with his history it's something that his doctors want to keep an eye on.  Ultimately if his levels were to continue to drop it's something we could supplement thru his IV. 
Right now we are simply trying to stabilize with all of the new changes, as well as simply getting over this sickness that so many of us have. 

Mitochondrial Disease Awareness Week is right around the corner and we are gearing up for it as well!  Our local mito walk is on the 15th and we are so excited to see everyone again this year!  Our oldest 2 kids have been fundraising away and have raised almost $200 on their own!  We are so very proud of them!!!  Eli's Journey Energy for Life Team  This link will take you to Eli's team page where you can join our team as an in person walker, a virtual walker, and/or make a donation to Eli's team!!

For Mito week I'm going to answer the question we are asked the most.  How do we do it, how do we find enough time in the day.  We are going to walk you thru a week in the life of our Mito family.  We will record our days and nights, and of course will take fun pictures to go along with it all. 

More updates soon!

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