We are home for a week. This was a long exhausting trip.
We got into Kc Thursday afternoon. Bob had his interview and I went to a friends to hang out. They have 3 girls, their youngest is 2 yrs old and she also has Mito and a feeding tube. We "met" online at 1st thru support groups, and then met in person when Eli was rushed by ambulance to the childrens hospital in KC in January. We've gotten to be good friends. After Bob's interview we all hung out and had pizza! Bob's interviews went well, they will make choices next week.
Friday was holy cow long. 8 appts in 8 hrs. His echo showed the clot to be 3 by 3. 1st it was 6 by 6, then 4 by 7 and now 3 by 3. So good progress in the right direction! They still obviously want to continue the blood thinners and will do his next echo the beginning of May. During feeding therapy Eli had almost 10 tastes of applesauce. Some of them were super tiny, and it did take 45 minutes to get it done but I don't care! He did awesome!!! Nutrition said he looks good, super chunky. She is leaving his feeds right now at the 18hrs a day and hoping the weight gain starts to slow down. With the CPAP now we are realizing how much energy he was using during sleep before now. It's amazing. He go his hearing aids next. He is doing really well with them so far. There was so much information and learning. I was so nervous. He will be rechecked on those the beginning of May as well. She gave us a journey to chart how he seems to be. So far he is looking around alot. Not sure if it's such a new world being able to hear things. Time will tell. He met with his GI doc about all of the gagging episodes. He is wanting to run a PH probe as he's wondering if there is some refluxing going on again. His anti-coaguation levels showed good, so no changes there. He also got all of his hip xrays done but we haven't gotten those results.
We were so exhausted by the time we left the hospital, and Bob's foot was so swelled up he could hardly walk. We grabbed dinner and headed back to the hotel. Eli was asleep around 7 and Bob and I by 9.
We headed home this morning. Eli made it to about 7 tonight and was just done. I have a feeling bob and I aren't to far behind.
The 4 older kiddos will be home tomorrow after church and life can get back to normal, atleast for a week!