It's been a busy week. It takes everything I have in me to stay going and to slightly keep up. Blogging has fallen to the wayside a bit because of life.
Last week Eli had PT at his new therapy center. He again worked with the gait trainer, then tried out the treadmill. She also showed us a stander that she is wanting to try out with him as well. His PT called insurance and his wheelchair DME and they will be meeting us at therapy in 2 wks to get a gait trainer and stander ordered for him.
On Wednesday I also played phone tag with Eli's main doctor. Insurance again denied 2 of Eli's meds, so we were originally going to do them as shots if this occured. So I called the doc to get that done. He finally calls me back with unexpected information. They have decided in light of Eli's history, and his blood clots, and the mito, and the factor V leiden, that they are placing Eli on anticoagulation precautions. The doctor informed me that every single time we give Eli a shot we are increasing his risk of developing a blood clot. He's not comfortable giving any more shots. This changes so many of Eli's protocols. He is meeting with Eli's hematologist to work out the best and safest plan. We weren't told that they were concerned about this and that it was something that would just be monitored. They apparently have come across more info in all of his testing and labs that tells them otherwise.
On Thursday Eli had OT/PT/ST. It was a mess. They had wanted Eli to go to their group therapy sessions . They wanted him to go 5 days a week for 2 1/2 hrs a day. It's like a preschool type program. We were leary. They told us on Thursday that they didn't want his nurse in the room with him and just wanted her to hang somewhere in the building for if he had problems. They also didn't want him on his feeding pump because it is to much of a liability for them they claim. They are afraid one of the other kids will pull it out. They said during class they want him to be a normal kid and therefore don't want all of his equipment or medical interventions or nurses. This really bothered me. It to me was really discriminatory. Secondly it really hurt me. I want my little man to be like a "normal" boy too, BUT he isn't. If you take all the medical interventions and equipment away from my little man you no longer have my little man. They are apart of Eli and these interventions have helped keep my little man alive, and have allowed him to live the life that he is living. This was our first time that it has truely hit me in the face that my little man won't be able to live a normal life, interacting with normal kids in a normal environment. It was rough. (as a side note we turned them down and will NOT be sending Eli there...obviously!)
On Friday we went to Eli's first ASL playgroup. He did great. Ari enjoyed herself as well. It was definitely overwhelming to try and keep up with all of the signing and trying to remember everything I have learned so far. But we did well. Can't wait until our next one!
The weekend we stayed around the house as a family. We worked on Eli's shirts and buttons for the walk. So far we are up to 28 people on our team and more are going to be joining us on Thursday. We are super excited and looking forward to this weekend.
This week we have quite a bit going on. Eli is going to get refitted for glasses, get fitted for his new AFO's, have 6 therapy sessions, 2 nurses, 3 doctors appts, and 1 lab draw. Emily has violin twice, and choir twice. Jace has book club and boy scouts. Ben also has boy scouts. Ari has a quiet week. Bob and I just run in circles trying to keep it all going!
I will take lots of pictures this weekend at the walk and get it all updated soon!