Update on us...

[Chelsea]

That's great news!!! It's always good to get confirmation that our struggles with this diet and sometimes our doubts with diagnosis can be confirmed but good growing and development.

And a whole 1lb, WOW, we are jealous! I hear you on the family trends too. My boys are off the charts in height and 95% for weight and Gillianne hasn't even been close to the 3% since she took a nose dive when we started solids foods.

Keep it up Kristen & Coley!

[Chelsea]

kristen said:

Maybe in time!

KJ

That is exactly what the Dr's keep telling me. In time, the diet will work and she will grow. In time as she grows she will be able to tolerate these little flu bugs. Well tell me how the heck we get her bigger when she looses 3 lbs everytime she gets sick. At 18 lbs, that's a lot of weight to loose!

My frusterations are growing so fast. I found out yesterday that our DNA hasn't even been sent out yet! We banked DNA on Feb 14th and it hasn't even been sent out for testing! I am tired , exhausted and keep imagining that this nightmere is going to end soon. Sorry, got a little off track jus having a rough time here these days.

[Chelsea]

It is still good. We did DNA banking where the strip the blood down only to DNA, it will be good for many decades to come. Thankfully, there is that. Not that it matters, Gillianne gets so many blood draws for all her issues, we could again just add it to the next round.

[Chelsea]

We have gotten very experienced with the blood draws. The week we spent in and out of the hospital in April required 19 blood draws and/or IV's. I typically put her in the sling really tight, one nurse holds her arm or leg and the other nurse draws or places the IV. I use keywords with her like "I know, I know" and now she has gotten to the point where she says those to me. At the end of the procedures, even through her tears you can hear her say "Good girl". When we have to go to the ER I always call the pediatric nurses down to place her IV, I will not let the ER nurses do it, unless we go to the Children's Hospital which I don't usually do.

Temperatures issues, yes!!!! Gillianne has a history of cyclic fevers. 104 fevers for 12 days with no known cause. These fevers started at 9 months old and this is what initially started the hunt for the needle in a haystack. They never have associated the cyclic fevers to the HFI. She also has an immunodeficiency, and typically runs warmer, even a low grade fever most evenings if I take it, which I don't anymore.

What type of temperature issues does Coley have?

[laurie]

Kristen,
Hunter has ALWAYS been overly hot, not too much on the cold though. He would sweat so much, espec. at night, that his pillow case would be soaking wet. The rest of us would be freezing because I would adjust the temp in the house to try to get him comfortable. Of course his being so hot all the time would bring on the dehydration........another of my one thing triggers another!! His sweating has eased up a whole bunch since starting the HFI diet.
Maybe his body was working too hard trying to deal with the "not safe" foods??
Don't get me wrong, he still has a problem with the sweating, it's just not as bad now.

Laurie

[Chelsea]

LOL, I completely misunderstood!

We haven't really had a problem with that, though I do remember the sleep sweats she used to have. There would be a huge puddle in the bed at night from her sweaty head and I would have to change her clothes in the middle of the night. Long naps in the car, her seat would be soaked. Looking back on it now, it was probably LBS.