We can! Caleigh is doing so well right now that we just don't want to jinx it. Of course we encourage Caleigh and cheer her on. We just don't give details.In the past few days we went to see our Nephrologist (kidney doctor), we are good to go for another month and we went to see our Pulmonologist (lung doctor), we are good until October! No oxygen and no breathing treatments and we might just get by without needing the RSV vaccine. We go in October to get the Flu shot and I'm pretty sure the Gray Family will be home bound all winter preventing illness.
Caleigh's bed, It's a Arm's Reach Co-Sleeper.
We got it as a gift at our baby shower. This crib has been a Life Saver. If you are into having your baby close by at night, this is the castle of cribs. With Caleigh's pumps and medicine schedule, having her next to us makes our job so much easier. We love it!
Tomorrow we go to the GI doctor. Most likely we will increase the dose of Imodium to help Caleigh's liquid stools. They have gotten a tad bit better, but nothing to cheer over in terms of consistency. We are also doing 22 hours of TPN instead of the 24 we have been doing since January. Whooho! A whole 2 hours off the pump! Caleigh is still hooked up to her feeding pump during that time so it isn't complete freedom, but exciting nonetheless. Caleigh is still getting 10ml an hour and doing amazing. I feel confident that she can make it to her full feed which would be 30ml an hour. These things just take time and almost a year of 'time' later, we have the patience of a Monk.
Ahhhh....the hiney rash.....SO MUCH BETTER! Here's what we did: So we took Ashley's advice and started the Colloidal Silver and Cornstarch, something we haven't tried before. The day before I did some research looking for anything to help bacterial overgrowth besides all the crazy antibiotics we have used in the past. If we don't get the bacterial overgrowth under control then the liquid stools won't slow down and Caleigh's diaper rash won't get better. I've been on a 'Natural' kick lately anyways. So a couple of the short bowel kiddos that I keep track of and also are apart of the short bowel group on yahoo suggested Oregano Oil. I like spaghetti as much as anybody so I thought.......why not? Apparently, Oregano Oil is a natural anti-bacterial, anti-fungal, & anti-inflammatory. I did a little more research and you can't use just any Oregano Oil. A lot of people with IBS and other gastric problems use the oil and they recommend Wild Mediterranean Oregano Oil. I guess it is more pure than just any old oil. I definitely looked into side effects and couldn't find any. So we bought some and started giving Caleigh 2 drops a day. Immediately her gas pains have slowed and her stools have gone from 13 or so a day to 6. So with her stools slowing down her tush is able to rest some in between diapers. Combine that with the Colloidal Silver & cornstarch and we have a happy hiney again. We will see what our GI doc says about the Oregano Oil. I didn't exactly ask him first. Maybe it's easier to say sorry, & hey it's working, than ask permission?
I've got a few pics of Eric and I as babies that I'm working on getting up. It should be fun to compare. Also, we have been working on getting Caleigh some alternative therapies in terms of developmental work. We are having trouble with the funding, of course. Insurance is being a pain and I'm pretty sure they won't pay. As soon as I can put together a post about the therapies I will. It's very interesting stuff and I'm really excited about the possibilities.