Yes we are home and boy did my bed feel good last night!
Alex is doing well. We are once again starting at the bottom with our feeds and have a plan to progress even slower. I cannot wait to make some progress so my sweet boy can get back to just feeds. It is so hard for him to be his happy, fun, crazy self while trying to tote around 12 lbs of paraphenalia.
We gave his first dose of procrit on Thursday night after his transfusion. Hopefully, that will be the last transfusion for a LONG time! Unfortunately when I got home our home health company had sent the wrong dose of procrit so I need to call first thing Monday morning and get it straightened out!
We also received a tremendous blessing this week. The organization "Help Mito Kids", (which was started by my good friend mariah's family) held a very successful fundraising walk this past spring. They are going to use a portion of the funds to help some of the Mito families and we were chosen to receive a one time reimbursement for some of our out of pocket medical expenses!!!! This is an answer to prayer. It is so very needed and appreciated. We are very excited about it.
If you want to check out the website, it is www.helpmitokids.org . The money that they raise is split between research and direct medical expenses related to the Mito Disease that insurance does not cover. If anyone ever wants to donate or fundraise for a worthy organization, this would be it. Any money given in honor of Alex would be paid directly towards medical expenses that our family incurs that are not covered by insurance.
Also, you may remember that at the end of March we were blessed to do a photo shoot with a professional photographer through the organization "The Littlest heroes Project". Those pictures are up now. If you go to www.starglophoto.com and click on site. Then click on proofs. The password is Alex. Enjoy! She really captured his personality.
Thanks for continuing to ride this crazy rollercoaster with us!