First, I took these pictures a couple nights ago. Trevor was on the computer looking at something, and Josh crawled up on the chair with him and was so excited to be a 'big boy'.
Josh's 24 hr feedings are going marvelously. I am serious, he is such a champ! He has not even once tried to take off the backpack, or complained when we put it on him a million times a day. What a sweet boy. I am in awe at how well he has done. Part of it may also be the fact that he feels much better and is not vomiting anymore. So that brings me to the changes we made and how well it has gone. We have added two more/different meds for his reflux. One is Prevacid, but instead of once a day, we have to do it morning and night now. We added Zantac twice a day. Also he went off the Reglan and is on EryPed 4 times a day now. Between that and not doing bolus (large amounts) of feeds anymore, he has stopped vomiting all together. Great news!!! So for now we can avoid the surgery. His GI doctor is so pleased it has worked and for now told me to keep this exact routine going until his next feeding clinic appt, which will be in February. So it looks like we are on the feeding pump night and day for at least the next 3 months. But I am so happy to see how well he is doing and how happy he is.... so it makes it all worth it! The only problems we have encountered have to do with his feeding pump. We have a new pump on order with something called a 'super mini backpack'. For now we have been rigging different backpacks. It's a pain, but we should have his new setup in a week or so.
Now onto the not so great news. Josh is sick again. I took him into the doctor yesterday and he has a double ear infection and his lungs were starting to sound a little wheezy. So back onto the albuteral we go and we will be watching him close. I have tried sooooo hard to keep him safe from germs, but am not having a good track record. He may just have a lapse from his H1N1/RSV and a secondary infection. But I don't know. Can't really tell. He is not sleeping well... and just in general not himself. But we are on some antibiotics and he should be feeling much better tomorrow.
Other than that... life is crazy normal here. I am looking forward to this holiday week since it means no doctor appts and therapy for Josh. Much slower pace. I just need to get my Christmas shopping started and then I can relax even more!
6 comments:
I am so glad that Josh is doing so well with his new feedings. I don't know how you remember all the medicines he is on and when to give them to him. I know that you have really tried to keep him healthy but with 2 boys in school it is bound to happen. I think you are doing a great job keeping up with everything. If not, I think that Josh would be a sicker kid.
I love the super mini!!! he had it for a whole month before the insurance comp said they won't cover it. So glad to hear Josh is doing some what better. When Is you fun apt??? Maybe I can schedual Js aroundthe same time??? Just a thought. I have not talked to you in so long. I miss you!! So my exciting info is I have got some #s to support groups that meet every couple of months. We have to go. I have not found the time in my day to call and learn more but it will be top priority tomorrow. So...How have you been? haha 8)
I love that life is "crazy normal". :) I am so glad Josh is doing better with the new feeding routines!
So sorry he's sick! UGH. Can't stand the sick kiddos... no fun for anybody.
I'm so glad Josh is doing so much better! You're so amazing to me, dealing with all of that. It'll be great to have a kind of down week!
nice to hear josh is doing better now XD
Glad things are going so well! Happy Holidays!!
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