Some important highlights for H: The results showed 8 types of parasites including giardia, roundworms and tapeworms. H is also allergic to dairy, which I suspected from the day we picked her up. Her nanny had told us that she always had running stomach after drinking her formula (which is dairy based). We took her off her formula on day 1 and she stopped writhing through the night on about day 5. The other night I gave her some of the boys' "ice-cream" which had raw milk in it and she was very gassy during the night.
H also showed high level of Lyme Disease, mercury, lead and tin. Our pediatrician and the department of public health called last night to inform us that H has "multiple concerning parasites"... she will not be able to go back to school anytime soon. I mentioned to our Doc that H had this testing done and that we want to start treating her Lyme disease.
This was the response from our pediatrician:
"Aha, ha, ha... Well, Mrs. McK, I can see you're trying to go after this with great conviction, and I applaud your effort in trying to get to the bottom of this big thing. But why don't you take a step back just focus the giardia for now? I just can't believe her MRI came back normal. I have looked over that scan so many times-- there has to be something we're missing. I'm not even sure you need to have the spinal MRI. H's neck is so weak and her head seems so heavy on her body. In my opinion she has very typical CP. I just don't want you to get your hopes up that you're going to find something. I also want to spare your time, since you do have 4 children, so that you are not running after non-medical whims, like Lyme Disease.
Have you thought about joining some type of support group that will help you come to terms with your daughter's CP?"
Scott beeped in on the other line leaving me no time to respond, which was providential. I will not bother to put all my non-edifying thoughts on this conversation into words as it will only make me upset, and you can read my previous post, which is a fair summary. I guess I expected our pediatrician to be a little more interested in finding out what is really going on. I guess I just assumed we were on the same page... if her symptoms are not caused by what was thought, we should find out what is causing them so that we can treat the cause and not just the symptoms. Does this mean I am not coming to terms with her CP? We were told, "it doesn't appear to be CP."
So, that's where we're at. Dr. Chambers from the CP clinic called yesterday to see if we have scheduled the MRI. We are still awaiting approval from insurance. He, on the other hand, seems almost sure we will find something in the spine.
In the mean time, we are moving along with life. H started school this week and LOVED it. She did not shed one tear the entire day (from 9 am to noon... only 2 days/ week)... I, on the other hand sobbed and then fell ill all morning missing her. She made a good friend, named Justin and she says his name about 3 times/ day! H already knew her teacher, Miss Elizabeth, as she had come to our house 2 days/ week to teach her at home!
H's recent milestones:
pushing herself up to a sitting position
5 new words
using right hand during play
clapping
taking off and putting on a hat
taking off and putting on sunglasses
She is AMAZING, so smart and sooooo determined.
M is AMAZING too, so smart too and sooooo verbal and polite. Her favorite things are reading books (but not coloring books) and "makas" (marker-- books and markers don't go together very well) or watching DaddyVDO. She also talks like JR and C. She says "pop-CYCLE peas", b-water and other fun things... she also has their accent!
The boys are missing daddy more than ever before. C has questioned my integrity a few times. He's not sure he believes S is coming home. These boys are BOYS and it's so fun. More on them later!!!
Here are some pics of my little girl. Oh man, is she gorgeous or what?
Notice how determined she is... she's so fiesty too!
Striking, isn't she???
This is H's first day of school. The two women in the pics are her teachers. She's in a SPED program for infants- preschool. I love her teachers and her classroom!
9 comments:
oh my. . I had never thought of that fact that M might pick up their accent since she's just learning. . and you lean towards the accent too! ha ha! that's awesome. . It will be really weird if talking to M on the phone makes me miss Liberia! Speaking of M, you didn't say what they said about her? What did the biofeedback come back as?
Yes, Yes, pictures please!!
Love you and missed talking to you this week. . Greg has small group tomorrow night, so maybe I'll call!
Love you ALL. . kiss and hug those kiddos for me,
Bran
Oh... K, I just had to laugh a little when I read your pediatrician's response, because we SO ran in to this same sort of perspective last week about the cyst on Henry's spine. The neurologist told us at first that the cyst was most likely causing the paralysis in his left arm... but then a few days later he called and had a half-hour long convo with Peter where his tune was completely different. He seemed to have forgotten what he had previously said and was trying to convince Peter to just come to grips with the fact that the arm is the result of a brachial plexus injury after all(UM, excuse me? The MRI report says NOTHING about the brachial plexus being injured... so what the?) Anyway, we were a little dumbfounded by his switch, so we're following up with the neurosurgeon in Seattle that Peter's dad has been in touch with. There are just TOO many variables for us to be "settled" with the prognosis that there isn't any hope of him regaining (even a little) use of his arm.
I love you my dear friend -- and I am glad we are going through this diagnosis hoopla together! I think about your H. a lot and pray for wisdom for all involved... as well as total and COMPLETE healing -- please, Lord!
I love your perspective and your tencity. Keep on! You know your daughter and I think your plan of action is right on. May it all become VERY clear soon.
Love to all (from all of us!)
A.
go with your gut!! we kept telling josie's neurologist that she was going way down hill after starting the seizure medicine topamax and he just basically patronized us and said she will get used to it. she kept going down down down until we demanded it be stopped after she actually started having more seizures and then her bone broke from rickets that were made much much worse by her seizure med and her leg broke. doctors are not all knowing. those are very valid concerns regarding parasites and lead and such. they need to be corrected whether or not she has cp. and maybe, just maybe some of her symptoms may resolve!! you have accepted her as she is while trying to help her reach her full potential of development and health.... that is your job. you are her advocate and he should listen to you....grrrrrrr this is such a sore spot with me regarding doctors who dont listen to adoptive parents. stick to your guns, do your research and keep doing the great job you are doing.. hugs, rachel
Well, Amber always uses the words I wanted to! *pout* ;0) So, I'll just echo them... "diagnosis hoopla"... AMEN! "I love your tenacity." I second that motion!! I seriously feel tired just reading all of this, but not too tired to pray!!!!! Good to hear from you, and GREAT to see pics! ...and just when I thought I'd seen H in every cute dress on the planet, you come up with another!! ;0)
Love you,
Jamie :0)
She is beautiful! Go with your mama instinct (intelligence :) and go after answers!
You're doing the right thing.
Teresa
You must be the advocate for your children. Don't hold back...push forward and get the tests you want and need. Doctors are human...and our bodies are not machines...push forward!
Praying for you all! Love, Kelly
You go girl! You have the attitude and personality to get to the bottom of this. H is lucky to have you as her momma advocate!
Wow. I'm just realizing who H is. I prayed for her awhile ago when she was on the waiting kids list. I'm so thrilled she has a home. Sorry I'm a little slow.
What does your doctor mean only non medical whims.
Last I knew Lyme disease is a medical issue that needs to be dealt with as soon as possible. And that many parasites and Lyme can have a huge toll on a little body.
You go girl.
I am always amazed at how God's strength is perfected in our weakness. You are strong in the Lord. Press on and rest well in Him. Scott's almost home! I thank God for the grace he has given to you and the grace he shows to others through you. Praying for you all.
Matt
P.S. I tried replying to an email from Scott and my reply bounced back to me. Any suggestions?
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