I am so sorry I am a few days late posting this but I wanted to let everyone know WE ARE HOME!! Anton is doing much better and is back to his happy little self.
He is not up to his total volume on his feeds yet but we are slowing bumping up his rate until he is getting a full days feeds without throwing up. He hasn't thrown up in several days so we want to make sure it stays that way. Anton has lost around 4 pounds (we weighed 25 pounds and now weighs 21 pounds) in the last few months so our goal right now is to get him back up to the total volume he needs a day and once we get him there he will be getting around 1700 calories a day. Hopefully this with jump start him to gaining weight again.
Other than that he is doing amazing and we have never seen his skin look as good as it does right now.
We have some pretty exciting news too. We have been working for several months to get Anton on Medically Dependent Child Program, it is a medicaid program that based off of Anton's income not ours, and is for children that are medically fragile. Our insurance is billed first then medicaid and medicaid covers anything out insurance doesn't. It has already been a HUGE blessing! Anton also qualified for 50 hours of nursing a week through the program and 15 hours of respite care a week. We hired our nurse yesterday and she starts on Monday! The respite care means we can hire family or friends to come help with Anton or his things around the house to lighten our load a little so we can rest. It was hard for me to want to have help but I know this will be a blessing and will free us up to do.... well I have no idea what we will do :)
We were in the process of enrolling Anton in preschool at our local public school and were almost done with the process for him to start but we decided not to enroll him at this time. I was very excited about it but we just don't think this is the right time to do it.
Other than that not much is going on with us.
Hope you are all doing well.
He is not up to his total volume on his feeds yet but we are slowing bumping up his rate until he is getting a full days feeds without throwing up. He hasn't thrown up in several days so we want to make sure it stays that way. Anton has lost around 4 pounds (we weighed 25 pounds and now weighs 21 pounds) in the last few months so our goal right now is to get him back up to the total volume he needs a day and once we get him there he will be getting around 1700 calories a day. Hopefully this with jump start him to gaining weight again.
Other than that he is doing amazing and we have never seen his skin look as good as it does right now.
We have some pretty exciting news too. We have been working for several months to get Anton on Medically Dependent Child Program, it is a medicaid program that based off of Anton's income not ours, and is for children that are medically fragile. Our insurance is billed first then medicaid and medicaid covers anything out insurance doesn't. It has already been a HUGE blessing! Anton also qualified for 50 hours of nursing a week through the program and 15 hours of respite care a week. We hired our nurse yesterday and she starts on Monday! The respite care means we can hire family or friends to come help with Anton or his things around the house to lighten our load a little so we can rest. It was hard for me to want to have help but I know this will be a blessing and will free us up to do.... well I have no idea what we will do :)
We were in the process of enrolling Anton in preschool at our local public school and were almost done with the process for him to start but we decided not to enroll him at this time. I was very excited about it but we just don't think this is the right time to do it.
Other than that not much is going on with us.
Hope you are all doing well.
Wow! Praise the Lord from whom all blessings flow! So happy for your family. Love you guys!
ReplyDeleteHeidi Gillette
So glad that things are going well. I checked earlier today and was worried that there had been no update, so I found you on FB and was relieved to see how well he's doing. :)
ReplyDeleteAnd yay for the Medicaid help! That's wonderful!!
Much love from down south.
xoxoxo
Great news
ReplyDeleteThe respite and extra care will keep your strength and sanity for the long haul. Go with it, don't dare feel you don't all deserve it
Vanessa, this is REALLY -REALLY good! I am glad you are getting help! My daughter Nikki always prays about Antosha every time before she goes to sleep. I told her that Anton was getting better, and she said "If I pray a lot I think I can get God to give Anton all his skin back!". I thought it was priceless. We pray for all EB kids, but about Anton in particular. We love him!
ReplyDelete