Saturday, December 27, 2008

More Tests. We are closer....and an update in 2008

Friday, January 7, 2005
Wow what a busy week!!!!!!!!!! Monday night we went and had Roo's sleep study done. Poor baby was hooked up to so many things but she slept great through the night and the room was awesome like a hotel room!!!! All the techs were very nice. The next day she had her skin biopsy. My Roo is so strong and brave she didn't cry one bit. By Monday, we should have some of the results and in 8 weeks the rest. Tuesday afternoon we had her visual evoked potential we got the results back from that and her brain is receiving messages from her eyes which is really good news wooooohooooooooo!!!!!!!!!!! Wednesday was supposed to be the easiest day HA! LOL We met with 2 seizure neurologists who diagnosed her with Class A and B epilepsy. They did a blood test to check the levels of her medication. Never knew that needed to be done! Stupid thatstate docs! Then we met with Dr. P. I love this doctor so much he explains things very well and spends a lot of time with us. He answered alot of the questions I had. He answered that one stinking question I always hate with grace and in a way where I didn't walk away feeling like I was still so lost. I feel we are on a path to understanding things. He is testing her for Krabbe's because he said that she has a lot of the symptoms but doesn't fit in the category of that disease exactly. When I asked him what that meant he said that Roo is actually progressing faster then that disease. Pretty scary stuff to hear. I know it is THAT BAD.........still hard to hear nonetheless. So, where are we now? We are testing her for storage diseases with specific interest in Krabbe's. I would love to have an answer, as devastating as it would be for me to hear it was Krabbe's, at least it would have a name. Then, we went to the lab for blood work. They poked her 4xs and couldn't get anything so we went off to another lab and they got just enough for the Krabbes test. So after 8 hrs of doctors and blood draws we were beat. Thurs. she had her MRI and anaesthesia. She did great as always!!!!!!!!! Then we went to the opthamologist. That was the hardest and last appt for me anyways. Sitting in the waiting room with other kids Roo's age was just too much for me to bear. And, after not having a good cry for 3 months the tears just started to flow. The nurses there were nice enough to put us in another waiting room. It was the first time that I was around other kids Roo's age. I seem to have avoided all that pretty well for a year lol. More of a reality check then I needed. So, onto the appt., the opthamologist said that Roo does have a mild form of optic nerve hypoplasia and that her optic nerve is pale. That it has suffered some damage from whatever it is that is slowly taking my girl. At least we know that she can see though....she does have some visual impairment but she can see and that's all that's important to me. He said the same thing as the metabolic doctor which was that either that's all the damage that she will have or it will get worse. I took Roo to the opthamolgist back in November in thatstinkingstate and she had said that her optic nerve was of normal size and normal color. So, who's to say if that doctor sucked like all the rest in thatstinkingstate or if the damage has just been done recently. All in all, it was a hard emotional week but I love the Cleveland Clinic I love the doctors, the nurses ,the techs, everything about it. It is so nice to get all her care in one spot, for all the doctors to be communicating together. It is just so much better for Roo and for me as her mom. We have a few more tests to do and then we go back home and its Moving time!!!!!!!!! AMEN!!!!!!!!!! I have been thanking God everyday for my little Roo. I have looked back over this past year and seen how Roo has worked miracles in my life and my other girls lives. It really is amazing the things in life that have gotten better because of her. Most importantly, she's bringing us home to Ohio where we will be surrounded by so much love and support!!!!!!!! I thank God each and everyday for my friends, my sisters, my mom, my dad, and everyone else who has reached out through prayer or otherwise to me and Princess Roo. The power of prayer is a miraculous thing!!


How did I survive all of that? Reading all those words seems like a lifetime away. I'm sitting here freaking out about Ringworm and Tinker Tot's draining, oozing, ear.......wondering why I'm freaking out so badly. I know if Blue Bell gets ringworm she'll be out of her gymnastics for a few weeks and that would be a VERY BAD THING. If I get it, oh gosh, who knows what will happen. Seeing Tinker so sick these past 4 days has broken my heart. Even more so, because my germaphobic, OCD, freaking out self, couldn't bear to cuddle her or hug her or get without one foot without almost having an anxiety attack. Maybe I have a touch of PTSD like Blue does. It might explain the anxiety, the absolute hate over feeling not in control, and not being able to wave my wand and make Tinker Tot all better. Her Dad came and picked her up early. I'm supposed to be at a party with Blue Bell right now. My dearest just went and dropped her off. And what am I doing now? Drinking and apple martini at 3:30 in the afternoon. That makes total sense right??? Because, after working myself up in a dither over ringworm, my anger at the ex-idiot for not having taken care of it sooner, (the step-sister has had is since Sept.!), him not realizing that um ya duh your 2 cats and horse need to be treated....I'm a little effed up. Seriously, I don't have ANY issues. eh. Oh ya, and I'm in a custody battle with the ex-idiot which is more about money then the actual custody issues. So, I can see the new wife twisting this all around that I sent Tinker home early because I can't handle her being sick. ^^^See above...I think I can more then handle her being sick......even if I'm running after her with a can of Lysol spraying everything she more tini and then...


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