Friday, March 20, 2009

Yay for weight gain!

Wouldn't it be nice if MY biggest problem was that I lost weight and the doctors were upset? LOL My peanut had lost weight at her last metabolic appointment and they weren't very happy about it. So I was reaaaaaaal nervous to have her weighed at her GI appointment this week. Thank heavens she was back to her normal weight!!! That means that she's doing fine on the baby food diet after all.

We have set some goals for her, I am hoping they are not too lofty. We are going to try weaning her off two medications she has been taking for her stomach. She takes Nortriptalyine for retching and Neurontin for gut hypersensitivity. Since we took her off the Beneprotein and started giving her real food and no soy/dairy, she rarely retches. So we are going to try her off these two meds (of course, trying one at a time) to see how she does. I would love love LOVE to get her off some medications, she takes too many!

Secondly, we have a goal that by the end of summer, we will have her completely on a blended baby food diet, and no formula! This is so exciting to me. Even if it's all going through her g-tube, it makes me so happy to feed her food. Fruits, veggies, meat, baby cereal. It's just so much more "normal"! If we can get her on an all food diet through the day, then she would only need one bolus of pedialyte in the middle of the night for hydration. How amazing would that be?? The GI and the dietician want to start working on this at the beginning of summer. That way if we have some rough nights, we won't worry about her and her brother, The Monkey, being too tired for school. Smart thinking, huh!

So it was a great appointment this week. It's nice to leave an appointment happy and hopeful!

I ordered Peanut a new MedicAlert bracelet today. Her account needed to be renewed, and (blushing in shame) she hasn't had a bracelet for two and a half years. Yes, I've paid all that time. Convinced I would call "next week" and order a new bracelet. Silly me! So today I did it. Can you believe that her wrist measures under 4.5" around?? SO TEENY! Anyway, all the information on her bracelet needed to be changed from the last one (no broviac or TPN thank goodness!). So in 7-10 days, we should have a new bracelet for her. And of course, it's purple. :)

Does anyone else have MedicAlert for their kiddos? It was so hard to figure out what to have engraved. I wanted every important thing on it, but obviously you can't fit it all. The nurse at MedicAlert told me what she thought was most important, and then I disagreed a bit, and we comprimised. LOL Her metabolic disorder needs to be on there, no doubt. She thought that developmental delay should be instead. I told them "They'll see that she can't walk, but they won't see that she's quickly becoming acidotic and going into a metabolic crisis". In the end, I won. It was tough to decide what to list as most important! Of course a latex allergy is at the top of the list. I hope I'm not crazy, and this is hard for other moms too. Sometimes I feel really overwhelmed.

All in all, things are going great. We just got our Little Heroes pictures back, so I will upload them here soon. I can't wait to share them, some of them are SO great!!


connie said...

Hey. I'm just too busy/tired to be doing much keeping up on blogs these days, so I lost track of yours ... and forgot just how much we have in common. Sometimes reading your posts sounds like our house! And you and I are going the same direction with trying to get the tube feeding blended foods going. How did you figure out the soy intolerance, and how does it manifest for your little one? Mal is definitely dairy-intolerant - just restarted her vomiting, diarrhea and bleeding diaper rash from TWO days of beneprotein (whey), just 1 tsp added to 3-4 bottles per day of breastmilk! I am pretty sure she gets constipated from soy ... when she's got diarrhea, constipation doesn't sound bad, but we both know it IS bad. Also, we cannot give her soluble fiber foods like oatmeal/barley/benefiber/metamucil. I keep re-testing, and keep stopping her up! Do you have constipation problems, and what works for you? I really, really don't want to go the med route for that one, although I will use lactulose if desperate, because constipation always leads to vomiting.

What foods is she taking so far?

Marissa said...

Hooray for Peanut's weight gain!!! That is wonderful that you have found the solution!

Can't wait to see your photos. We are having our project photo shoot in a couple of weeks.


The VW's said...

Glad to hear that things are going well for your little Peanut! I pray that the diet will work out well! I can't wait to see the new pictures! I bet they are just so precious!!!