Financially we are pretty good for the trip. Thanks to all of you for donating. U are all awesome and we greatly appreciate it. We have such wonderful friends and people in our lives to give to us. It looks like the kids school will also be making a donation to eli for the atlanta trip. Wow we are so humbled by all of you.
i don't really know what else to say other than good night more tomorrow. Postive thoughts to all.
today we have a doctors appointment with eli's peditrian for a followup. Heather, elis nurse paula and i are going to try to tie up all the loose ends for the atlanta. So much to get done. So far no oxygen for flight, rental car very expensive, and the flight is way longer than initialy stated. Very stressful today. Hoping all will go well.Will update when we know more.
Then to feeding therapy and nutrition. Eli did pretty well he took 10 bites with alittle work. She used a toy with lights as reinforcement to encourage him to take a bite. It seemed to work. Then we had to get blood drawn. Luckly we saw the iv team as we were going to the hemoc for the blood work. They got it done very quickly. So heather and i went and got a quick lunch.
Then off to hearing aids. The audiologist is really good. She showed us his hearing aids walked thru on how to clean them put them in and how to troubleshoot them. She was very helpful. We then finally went to the gi. He stopped the eryped for the motility and he ordered a ph probe. It will show us hopefully why he is chocking and turning colors. The doc wants to rule out all possibilities.
Heather and i are totally spent. My foot is so swallon i can barely get it out of my shoe. Heather is exhusted had a bad night of sleep and she has a headace. Eli is doing well with his hearing aids however he is also totally done with the day. He is used to getting out and playing but not today. Definitly no fun. We got some quick food and we are gonna keep it low key night and go to sleep early.
almost forgot the hemoc team called us and yes there is still a clot. It is much smaller it is 3mm by 3 mm so atleast anothe month and half of lovenox. He has an echo in may. Will post some pics when i get to a computer. Sleep well all. Positve thoughts to all.
i felt helpless not being able to take the weight off of heathers shoulders. We finally got the information needed and approve. Eli's nurse called the DME and the insurance people and got it setup and approved. Super crazy. Not sure what we would of done if she wouldn't of took this job and get it done. We now have to wait for the doctor to get his end done. Then we wait to see even if a flight will be available. The company we are using needs so much information and it has to be very specific and done very quickly. So hopefully we will have everything taken care of today. Will update when we have more info.
so over the last 5 weeks alot has happend. I am sure you all have been following my wifes blog. I am very greatfull to all that have been keeping up with us.
Eli was in kansas city his port was takin out due to infection, all of his doctors are being transfered to kansas city; which we are very happy with that. The doctors are so much better. They have been super helpful. We have atlanta in april for his final testing for mitochondria disease. I have mixed feelings about this. I want to know so we can move on and get some treatment started so we can make his life the best it can be. I'm also alittle scared for the diagnosis due to the outcome that we can't stop. The life that he will have. The life that he will have to live. How our lives will change. It's just weird for me because i have never had this kind of feeling of scared.
The older four have been pretty good. Emily has been enjoying school. She has been listening to tons of music. She listens to so many differnt kinds. It is pretty cool. She has been making friends in the neighborhood. Jace is good getting lots of help at school for speech,math ,and writing. We have seen so much improvement. Ben has been doing well in school. We are having some issues with his IEP; however i foresee it being straightend up soon. His writing has been very good. He is still having his outburst and his repetiveness. However this seems to be not as bad as it was. Since we have started the eat your dinner and you will get snack he has done much better than before about 80% success rate. So yeah yeah for us. Ari she is our princess. She was taken to screen for success. Heather was told she has OCD, Anexity,and sensory. The hearing test was done poorly so we will be into someone else to do the test. We are pretty sure that there is an issue.
The misses has been very busy taking care of the kids and the house. A busy time here. She has been getting the final steps situated for atlanta and getting the docs switched for kc. She does an awesome job at keeping things situated. Luck for us dr thomas has takin over some over her work to help make it easier on her and way less work. Heathers head aches have come back pretty bad and she now has a cold or something with allergies. We will be seeing our doc on the 1st of april hopefully she can help.My self i have been diagnosed with GERD, RA, IBS, lynch disease. Meds have been helping but not as well as i would like. Gonna see doc on the 31st.
we maybe moving to kc we will have to see how my interview goes. I have mixed feelings about it. I hate moving, the kids are doing well in school and we love the house. However eli needs the best care possible and the drive for heather really sucks. She is not home alot. So we will just see how things go. We go to KC starting tomorrow and hopefully be back on saturday. Lots of appointments. Well goodbye for now.
