Tuesday, February 26th
Monday was a good day for Ian. He got out of the room again and got to play with one of the volunteers. Here he is playing SORRY in the pod with the volunteer...as you can see by the corner...lots of equipment goes along with him.
We found out that Ian's number for Model Wavier has come up. Model Waiver is a branch of Medicaid, based on medical need not on financial need. This is something we have been working on since July. His spot opened up at just the right time, Model Wavier will be his secondary insurance and will hopefully cover what blue cross blue shield does not cover. Yesterday, I have my meeting with the care coordinator to start all the paperwork.
Last night was my night with Ian and we watched "Mars Needs Moms". During the credits, I look over and there is Ian's head bobbing up and down...he was dancing. Loved it, priceless, when I said something to him he stopped. Both of us started laughing...those are the moments I love.
Ian's swallowing study was this morning and it went well. It accomplished two things. First, it got Ian out of his room for a little bit. Second, it told us Ian can start to eat again. Yup, he passed the swallowing study...it actually looked a little bit better then his last one. Now we wait for the doctor to change the orders so he can start eating. They are planning on starting him back on a regular diet for all 3 meals. We will need to figure out what his caloric intake is with food so we can make sure he is being supplemented correctly thru his g-tube.
I did my 2nd trach change today, it went well. I was definitely nervous in the beginning but once I got started and Ian's nurse pulled out the trach, I just put the other one in....one more to go for me and two more to go for Brian.
One final update to add to Ian's already busy day. I arranged for Ian to have a visit from one of his friends from school. ....Susan thank you so much for bring Alex to come visit....both boys loved it and I am looking forward to seeing Ian with his friends again soon.
We found out that Ian's number for Model Wavier has come up. Model Waiver is a branch of Medicaid, based on medical need not on financial need. This is something we have been working on since July. His spot opened up at just the right time, Model Wavier will be his secondary insurance and will hopefully cover what blue cross blue shield does not cover. Yesterday, I have my meeting with the care coordinator to start all the paperwork.
Last night was my night with Ian and we watched "Mars Needs Moms". During the credits, I look over and there is Ian's head bobbing up and down...he was dancing. Loved it, priceless, when I said something to him he stopped. Both of us started laughing...those are the moments I love.
Ian's swallowing study was this morning and it went well. It accomplished two things. First, it got Ian out of his room for a little bit. Second, it told us Ian can start to eat again. Yup, he passed the swallowing study...it actually looked a little bit better then his last one. Now we wait for the doctor to change the orders so he can start eating. They are planning on starting him back on a regular diet for all 3 meals. We will need to figure out what his caloric intake is with food so we can make sure he is being supplemented correctly thru his g-tube.
I did my 2nd trach change today, it went well. I was definitely nervous in the beginning but once I got started and Ian's nurse pulled out the trach, I just put the other one in....one more to go for me and two more to go for Brian.
One final update to add to Ian's already busy day. I arranged for Ian to have a visit from one of his friends from school. ....Susan thank you so much for bring Alex to come visit....both boys loved it and I am looking forward to seeing Ian with his friends again soon.
boy, i love seeing these improvements! Shannon A.
ReplyDeleteScot Lippenholz Great update!
ReplyDeleteAnnelise Sullivan Did I see Becca at CFA tonight? Hope you are well
Jodi Postol Awesome!!! I will be in to visit my boyfriend soon!!!
Stacy Berman Lunenfeld That's the kind of update I love to read.
Debi Gersh Van Camp Great update!
Susan Schwartz Tanenholz Congrats on getting cleared for the Model Waiver!! That is GREAT news!! And the swallow study results are fantastic! Way to go Ian! <3
Michelle Levine Davis Marci, you such an inspiration of strength I can not even put it into words. Great person, role model and especially mother! Love ya!
Rebecca Goldstein Great news!