What’s Going on with Haddie’s Health?

Medically –

There is still the possibility of a genetic disorder/syndrome/chromosome abnormality, so we are seeing a geneticist at Vandy on the 29th of December for follow-up. I thought that was over and done, but I think I understand that there are more detailed tests that can confirm or deny the results to the previous testing done.  But honestly, I really don’t know.  It is all way over my head.  Peter could explain it better, he has done some reading on the matter. 

Peter’s 2 cents— At birth Haddie’s blood was drawn to rule out Turner’s syndrome. The result was “normal female karyotype” which means 46 chromosomes two of which are “X” making her a female….boys are one X and one Y instead of two X. Turner’s Syndrome is a Monosomy X condition where one X chromosome is missing and if I understand could be partially missing. This appears to have been ruled out. However there could be other issues that may need to be ruled out with additional genetic testing. Please pray for her as we move forward with those tests. If your interested, feel free to read more these are simple explanations of karyotpye and types of genetic tests available.

http://www.childrenshospital.org/az/Site1198/mainpageS1198P0.html 

http://www.biology.iupui.edu/biocourses/n100/2k4csomaldisordersnotes.html

Back to Brooke—She will be weighed Monday, and will hopefully be gaining amounts that will satisfy the doctor.  They are keeping a close eye on her weight due to her loosing more than 10% of her birth weight in the hospital.  I’m praying she will have gained enough to not be labeled “failing to thrive”. 

Two weeks from now she will have her hip ultra sound and a follow-up with the orthopedic doc to see if anything is wrong with her hip as suspected upon exam.

First Steps will come next week.  Hopefully, we won’t qualify 🙂

As far as the MCAD results……STILL waiting.  They did two urine tests, two blood and one DNA.  So far there are results for one urine and one blood – both normal!!  We have to wait a total of 30 days for the DNA results….boo.  So, we are still waking her up to feed her every three hours as per the Dr.’s orders.  I think the poor girl just wants to sleep.  I have to wake her for almost every feeding.  But this is extremely important if she does have MCAD so her blood sugar won’t drop to dangerous levels….we’re hanging in there.  When it’s all over we will all probably sleep the whole night through.

As always your prayers are coveted and so appreciated.  We are so thankful for you all and look forward to showing Haddie Joy off in public soon!!!

Many of you have asked about coming to visit.  Honestly, some moments in the day I would welcome a herd of visitors…other times I would probably hide.  Ha!  The trials and tribulations of feeding time.  If you’re a woman, and don’t mind – come on!  If you’re a man, stay at home, no offense guys.  My priority right now, is doing the best I can to feed her well.  That is taking a lot of time and effort and doesn’t always go well, so I often have to give her my undivided attention during that time.  The best thing to do is just call before you come and see how our day is going.  And if you are sick…or your kids are – please wait until your well.

Thanks again for all the prayers – love to all!

Pete and Brooke

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2 Responses to What’s Going on with Haddie’s Health?

  1. Tina says:

    Okay! I wanna visit! Love u!

  2. Rebecca Crisp says:

    I’m wrapping my arms around you all and praying that God will continue to work HIS miracles. Haddie Joy is so precious – I love the pics you’ve been putting on here of the kids. Can’t wait to see the entire family photo!! You guys are wonderful and it is a blessing to know you = just know that we love you and we pray for you often. God still blesses!!

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