i'm done. i am over having "high stress" kids. i am so ready for normal.
it was a hard week and i am glad its over. greta will be the end of me. i feel like i am at my wits end. her doctors appointments this week were heartbreaking for me. lets start with the geneticist....
first off i loved him, his name was dr. alan rope and he was amazing (aside from one of his shirt buttons being undone and seeing his hairy belly). he fell in love with my grets and kept telling my how cute she was, and a good normal cute, not a "syndromee" cute. besides the diagnosis of her being beyond adorable (which we all knew) he was just as baffled as everyone else. he told me that most diagnosis with genetic testing don't come until about ages 2 to 6, because the disorders or syndromes don't show their "true colors" until then. dr. rope also told me that he didn't really want to find a diagnosis for greta, he just wanted her to get better on her own, because with every diagnosis comes a sting of its own. however, it would be nice to know what to expect for her and also things to anticipate coming. he did order a test for some sort of metabolic disorder that he said he was only 5% sure of coming back positive. he was glad we were seeing the neurologist, dr. filloux, the next day and said he would suggest another MRI to him. overall, it was just nice to meet such a nice doctor. he wants to see her again next summer so she has more time to develop and he can better understand what she is doing.
the appointment with
dr.
filloux, the
neurologist, was a little bit harder for me. after about 35 minutes of questions and observing
greta he got down to business. he tested her reflexes, head size, and other things. he then told us he was concerned, much more concerned that he was when he saw her a few months ago. he told us that he did not know what was going on with her but was glad that she also meeting with the geneticist because with them working together they would find out what was going on.
dr.
filloux said that he was pretty sure she had a mild case of a disorder called "ocular motor
apraxia" (you were right meg!) but that was not the only thing that was going on (she also has a cortical vision impairment). he said that he was worried that this condition may get worse over time and although she is progressing developmentally her problem with her "
jitteriness" is persistent. he too was not familiar with what is going on with her but said that is was most likely a
neurological disorder. never the less, he was concerned about her and wanted to run a number of tests on her. he too agreed about an MRI at a later point (15 months age) when it would be more useful because her brain will have matured more. he told me to call back in 2 weeks for the test results and that he would research as much as he could with what her
symptoms are. only time will tell.
i won't even get into the nightmare that were her tests. apparently,
prets has terrible veins (just like her
mommie). they tried 6 times to get a vein to no avail so the called for the "iv team" at
primary's and wound up having to draw the blood from her head. is that normal? it was awful. oh, and they had to take
urine samples too. since she can't pee on her own (i know, would she be potty trained already) they had to put a pee bag on her and i had to run it to the hospital after she "went". not the best day.
i just hate when i am right about things. i want a doctor to tell me, she's fine, she's normal, everything will be okay. i go in to all appointments with no expectations and leave feeling empty and sad. i just want that normal baby so much.
jude is normal
developmentally but his birthmark is hard for me too. i thought for sure after
jude i would get a "normal" baby. i need to give up on normal and drop the word from my vocabulary..... i have decided that
greta is normal, normal for
greta. she will always be our
greta and we will just love her come rain or shine. i will love her for what she does not what i want her to be doing. its SO hard not to love her, just try and do it, you can't. i need to stop wanting her to be things for me, its selfish. she is so perfect, she is just her own perfect. i love her. i know the lord gave her to me so i could learn and so i could love her, and i do.
i hope this doesn't sound like complaining because i am not. sometimes i am just worn out. i just need to be content with my lot.
oh and i think my niece miranda looks like her so that makes me like her even more!
oh and i think my niece miranda looks like her so that makes me like her even more!
