You will be secure, because there is hope. Job 11:18
Hope is what I am surviving on right now. Hope that Buggy will remain healthy. Hope that we can get off TPN and back on feeds. Hope that Bruce gets a job soon. Hope that we don't lose our insurance. I feels like we are treading on thin ice and hope is my life line.
Overall, Bug is doing pretty well. His labs Monday were awesome! The best I have ever seen from Buggy. It was so encouraging. We cannot wait for him to be able to get to where we are doing TPN only at night and then hopefully off it all together.
We had a nurse come out this morning and we really liked her. We are so hopeful that she is the perfect fit for our family. She will be back Friday for a little longer.
Tomorrow, Bug and I are heading to the zoo to meet some of our friends who have 3 little girls with mito. We can't wait to have some time with friends.
I will update tomorrow with some pictures!
Ali
Alex and Maddy
Wednesday, May 26, 2010
Sunday, May 23, 2010
A day at the zoo
Despite the really hot weather, we decided to head to the zoo today. The dallas zoo was a having a preview of their new Savannah exhibit for members. The Savannah is by far Alex's favorite habitat. He wasn't very happy when I pulled out the cooling vest, but after a few minutes of fussing he got used to it. The new exhibit was great. Buggy loved feeding lettuce leaves to the giraffes. We didn't stay long as it really was hot, but it was fun while it lasted. I love to hear Bug spurt out animal facts that we have learned over the course of the year. I am always amazed at the amount of knowledge he retains. Here are a few pictures from our day:
Saturday, May 22, 2010
Home Sweet Home
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!
Ali
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!
Ali
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