Roll Call & updates please

[laurie]

Hey everyone...........
I guess I'm one of the ones Kristen is referring to as being MIA lately........by the way Kristen, glad to here things are going better for Coley!!
I've been really tied up here at home with Hunter, whom is also doing very well for the moment. We've gained weight, thanks to the feeding tube, and are holding now at a wonderful 52 pounds. It's not much, but for a child who has failed to thrive all his life, I've never seen him look better!!
We've had our ups and downs since the tube surgery on 4-24. The major "down" being when he accidently ripped out the tube and we had to rush to the ER, but he handled that better than I did.........ha ha.
I have found that Hunter is VERY sensitive to even the smallest amount of non-HFI allowed products, and still believe we have EE along with this. Thanks to the doctors "screw up" I'm having to be very careful with everything now.
Hunter's body went through a 3 day "detox" of all food by mouth and we are now doing food trials, adding 1 new item every few days, waiting and watching for a reaction. The first food we opted to try was a hamburger pattie and Hunter actually loved it!! So far so good, no signs of rejection. He'll continue with just the hamburger patties by mouth thru Sunday and on Monday I'm thinking of doing white rice. If he does well with the rice he'll at least have 1 "meal" he can have. It's going to be slow going, but Hunter is being a real trooper. I'm battling now trying to figure out how to add cake in to this trial so he will have "cake" on his birthday which is right around the corner (June 4th).
I do still get in here to read posts, if not every day, at least every other day, It's just a really stressed time here so I haven't been able to write much. I've been trying to keep his website updated daily to keep family and friends informed so I wont be bombarded with phone calls that I don't really have time to take........ha ha.
Kimberley...........you're in my prayers!! Hope all goes well, get an update out as soon as you feel well enough to do it!!

Laurie

[Chelsea]

Our big news is that Gillianne broke 20 lbs. This is the second time we have had this celebration but we are hoping the final time. She is happy and healthy right now and even her Dad commented the other day it's so nice to "have her back". Her pediatrician actually called earlier this week to check on us because she hasn't seen us in over 3 weeks, that's a record.

She has spent 3 weeks since Jaunary 1 in the hospital with flu bugs, dehydration and acidosis. Everytime her weight starts doing well she gets sick and regresses, that's been hard.

This last stay they discussed renal tubular acidosis, however, the nephrology department has declined a visit with her based on some labs 9 months ago. It's a struggle because she is a bit more complicated than one set of labs. We meet with her geneticist on 6/6 and if he reviews her labs from the past few visits then he will do the necessary work to get her seen. It's just been very frusterating because he has already changed one appt and then I find out that her DNA test never got sent out. We were expecting results at this appt and they never even got ordered. I can't complain too hard because I have no options as to where to go. The only other biochemical geneticist was the one that orginally declined Gillianne, telling my Dr that "let me guess, moms a nurse? Those are always the ones complaining about urine smells". It wasn't 3 months later the other Dr diagnosed her with HFI.

The diet has not been difficult for us. I guess partially because Gillianne doesn't have the sensitivities that others have. I know when we went to Disneyworld for a week we were not the best and she was a little bloated when we came home but otherwise has done well. My mom did feed her cornbread one night at dinner and she proceeded to vomit all night long but otherwise not many things have been a problem.

Our current goal is to transition her to whole milk. She was orginally diagnosed with a dairy allergy which we now know is not true. She has been drinking unsweetend soy milk and of course is still breastfed but we would like her to start with some whole milk and she doesn't care much for it. It suprises me too because if you have tasted unswetend soy milk, uh, not something I would want daily.

We did also start physical therapy a few weeks ago. We knew Gillianne had some delays, though I didn't really understand how bad. It's easy with her small size to expect less of her. Now that her nutritional status is getting better we felt it was a good time for therapy and she is really enjoying it.

That is about it, all my venting, celebrations and upcoming expectations.