I'm sorry for not updating more often... things have gotten kind of crazy around here. Valkyrie just came back from the doctor, and the news is kind of scary. It seems that she is growing taller, but not gaining any weight. She is now 44 inches tall, and 37 and a half pounds. We still aren't sure why or what to do about it other than feed her all the junk she can eat. That doesn't sit too well with me but we have to do something. The thyroid tests all came back normal, so she hasn't developed Grants Disease like her Grandmother Wiltse had. To be honest I almost wish that they had come back positive.. at least that way we would know what we are dealing with and could give her medication to counter the effects. I know.. the last thing she needs is more medication, but at least we wouldn't feel so helpless.

We are beginning to think that there is more to this story... which is why her doctor ordered a sweat test. A sweat test is used to diagnose Cystic Fibrosis. Now THAT is a scary thought. They are making great progress in curing this disease, but still.. I can't help but be totally freaked out. I don't let on about any of this to the kids, because they don't need to see Mommy lose it *grin* its just not my style. But still.. it would be really nice to just let it all loose. The preliminary test came back borderline, so we have to go back to the doctor July 5th and make another appointment to recheck the results. Once they are positive or negative there is no changing the results... but a borderline result they like to recheck. Of course if it does cme back positive or even borderline this time, we can begin to treat her and we'll finally have a name for this mess she has been going through. For some reason people just don't seem to believe that Asthma can be as debilitating as it is.

Valkyrie wants a pretty pink bicycle for her birthday, but the doctor said no. She is too weak to play that hard, and we are afraid that if she does ride it she may go into another severe attack. So we have decided to try to get her a Barbi Power Wheels jeep instead. She can still ride and have fun, but there isn't anywhere near the energy involved in riding it. I just hope we can come up with one for her.

May 24, 1999

Well, we have just come back from an appointment with some specialists. It seems taht Social Security didn't believe how serious her condition was so they sent us to three different specialists. One was for her speech, which went exactly as I had suspected. She is on about a 24-28 month speech level and her vocalization is very low. In other words she talks softly and carried a big stick. *grin* The therapist could barely hear her when she spoke, and had alot of trouble making out what she was saying which really frustrated poor peanut. She really hates being asked "What did you say?" and shows it by stomping her foot and making this really scrunched up face while she repeats herself. It was actually kind of funny because I understood everything (almost) that she said. You just have to pay really close attention to what she says when she says it or you lose part of it.

The other specialist was a developmental specialist. Peanut has trouble writing, I think its because of the medication... her hands shake so badly after a treatment that its hard for her to button her shirts let alone write her name. So they have now given her yet another disability... she has "Fine Motor Delay" along with some "Gross Motor Delay". In other words, she can't get her hands and fingers to tie her shoes, or color within the lines. They are also beginning to wonder if she has a hearing problem. *sigh* Like she needs any MORE problems than what she already has. They can't seem to get an accurate reading with the hearing tests because of her speech delay. We can't tell if she is hearing the sounds but not saying so or if she just isn't hearing them. Looks like we'll have to go back to find out.

The third specialist was a respiratory specialist. They tested her to see how much oxygen she was getting and using and how much was being wasted. They were really surprised to see that she doesn't breathe through her nose. It wasn't surprising to me.. I mean come on... if you can barely get enough oxygen through your mouth you sure aren't going to rely on your nose to give it to you. They didn't say much other than her normal oxygen level is about 95% and that we have to monitor her. Like I didn't already know that. Doctors.. go figure.