Saturday, May 2, 2009

I hate waiting

So I haven't been posting hoping that Koopers blood test would come back completely normal and I could move on with my crazy life. But now the test came back slightly higher than the "normal" and that was still a cause for concern and we are now waiting for the geneticist to give a call back to the Dr and let us know if it is OK or if it something that we have to do more testing for.

Let me start at the beginning... it is a very good place to I realise most of you reading this have no idea what I am talking about since we have been pretty hush hush about the whole thing since Bryan won't talk about any of it until the last test came back and it took a few a day or two after that. When Kooper was 6 days old we received a call from the Dr saying we HAD to go straight to Sonora quest to have Koopers 2nd PKU and a urine test that the first one came back showing elevated levels on the organic acids.... I totally freaked... so about 10 days later the blood results came back all normal. I was still concerned because the urine test still hadn't come back but decided that if the blood was normal the urine would be too. WRONG it came back high with the organic acid stuff too, and in that is a number of very rare genetic protein enzyme deficiency ... uugggg.... so I took him down to have more blood test this time they had to draw it from his arm. I did ok the first time they tried to get it but I cried with him all the way though the second time that he was stuck. The blood results came back on Tuesday and not the way we hoped. The Dr went in to how the test came back "ESSENTIALLY NORMAL" and then proceeded to tell me how this levels were "slightly" elevated and that a call would have to be placed in to the county geneticist because of the "slight" elevations.....eeeerrrrgggg.... they were most concerned about the levels for glutaric acidemia which in a nut shell is when the body can't break down protein and the acids can build up on the brain and cause the brain to bleed which then causes high fevers, vomiting and can even cause sesurs. We are still praying that isn't the case but just don't know.

He has not been able to handle dairy or meat. He spits up after I eat any dairy or meat and cries a lot if I do. I have gone almost completely off of it but I am finding there is milk and eggs in EVERY thing. So even if the test come back that the levels are OK then we have to figure out why he can't do meats and dairy's....uuugggg....

So because I have been going though all this Bryan decide that I could get my hair cut any way I wanted even short... he hates short hair.... but I love it! So here is my new cut! And another happy note Tate is FINALLY potty trained!!!! 3 days now yeah Heavenly Father always gives us as big of blessings as he does trials... what a blessing or what a trial!


the ridgeways said...

i love the new hair!!!! i'm sorry all the kooper stuff is so stressful. i hope you get some answers soon!! and YAY TATE!!!!!!!!!!!!!!!!!!!!!!!!!!!!1

Laci and Dan said...

Wow. I had know idea. It must be so hard and stressful for you and Bryan. You are in our prayers. Your hair is adorable!! And congrats on Tate's new success!