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.
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.
14 comments:
Oh Kennan, I so understand!!! Five children later, I've also let go of "normal" whatever that is, and chose happy and healthy, nurtured, loved, adored, celebrated and unique.
Hang on, you're a wonderful mom and the Lord obviously trusts you to care for these beautiful children. Kiss them both for me!
Love,
Denise
Kennan--You are amazing! Your children are so lucky to have you! There really is no definition of "normal"...everyone has their own trials to handle. Your children were meant to be with you..and you just have to always remember the higher purpose, right? :)
PS...I love your family picture! So cute! (Even if the babies aren't looking! :) )
Kennan, you are amazing! That does sounds like a hard week...you should call me! I'm just down the street. I'm here if you need me.
kennan/trevan- we check your blog every once in a while (friends of trevan from HS). first off, we think greta is amazingly beautiful and lucky to have you guys. second, we have a kid with a metabolic disorder - so we know a little of the struggle. we don't live in utah anymore, but we've seen the metabolic team at primarys. they're great. if you need any info or have questions, we're happy to help in any way. the best thing that helped us adjust to our "normal" was talking to other parents who could relate. sorry this is long- send an email if you want to chat - heidimaxfield at hotmail dot com.
Wow I wish I would have read this before we went to lunch. Could you be any stronger my goodness. Greta is perfect and she is amazing and she will be one of your greatest blessings EVER no matter what she may or may not do. I love her and I love you too!
Hey, Kennan. One of Robyn's besties here. I just wanted to let you know the needle in the head is not completely unheard of. When Grant had his surgery at 6 weeks it took them NUMEROUS tries to get a vein...they finally sent us out of the room and called in the big guns. When we came back it was in his head- sad.
P.S. Does the fact that your kids are way above normal range in the "beautiful children" department make up for anything??
Oh Kennan...Jude and Greta a WAY beyond normal. They are extraordinary...and they have an extraordinary Mommy too. You are allowed some down days...so proud of you for being able to express those thoughts and feelings. I love you!!!
I love ya Kennan. You are so amazing. I am always praying for you and I think about you a lot.
you really are amazing, kennan. those darling babes are lucky to have someone that cares so much about them and would go through anything for them. I admire how strong and faithful you are through all of this.
Who cares if I am crying right?.....I am so sorry sister bear. It was really sad to see you so down on Wednsday after your appointment with the neurologist. You are amazing and so is Preztle. I love you and admaire your ability to cope. Even if you do yell TREVAN better than ANYONE:) I hope you kow how much you are loved by all of us. You are one of my FAVORITE people. Love you!
hey Kennan, sorry for the random comment, but I've seen your blog before and come back every once and a while because I think you're hillarious. Knowing you from high school, I think you were given these children because no one can make them feel more secure in their skin, in this world, than you! You are a fun, honest person, and they really are lucky to have a mom like you to fight their battles with them.
YOu are a great mommy, and yes, you are allowed to feel picked on now and again, but just remember your babies are truly blessed to have you! You are so strong and upbeat and always want what's best for them. They are beautiful in every way!
Unno, having a child of my own, i now can't even imagine how that must be. I just cross my fingers every day. I agree with Heather though, you are really one of the only people that can make them feel good no matter what. YOur kids are adorable. Good luck and I am thinking of you. I feel for mothers after just becoming one. It is so different than before. It is refreshing.
Post a Comment