Everyone wants to know what exactly going on with Quinn. We
haven’t meant to keep anyone in the dark.
The truth is we don’t know, her doctors don’t know.
Quinn has not been meeting her milestones. She was not
getting the nutrition she needed despite trying to feed her around the clock.
She was admitted so
she could be fed and assessed. The NG tube is helping her get the nutrition she
needs. She is already up to 12 lbs and was at 10 lbs when she was admitted over
2 weeks ago. The tube looks scary but has been a blessing. She still tries to
nurse and she takes milk through the binkie-trainer, but this is more for recreation
rather than nutrition. We need to keep doing these things so she does not
develop an oral aversion.
In the hospital an MRI was done and it showed that Quinn’s
brain does not appear like a normal 4-month-olds brain. There was a lack of
development in some areas and calcium deposits noted as well. It is not clear
if these findings show that Quinn’s brain has not developed right or if it is
degenerating or both. In either case her
development is somewhere around 2-3 months and seems to have slowed.
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| Quinn waking up after being sedated for the MRI |
Her gastrointestinal
tract has also been affected. She has not been able to digest food normally and
shows signs of malabsorption. She has
had continued diarrhea off and on and we have been struggling in vain to find a
magic cream to cure her diaper rash. We had no idea we were fighting a losing
battle because her stool is so acidic. There was a time when it looked like her
bottom was burned. We have since put her on a mixture of a formula called Alimentum (It’s spendy) and breast milk. Her rash and stool is improving a lot and as a result
Quinn seems a lot happier.
We are not sure if Quinn’s agitation and crying is caused by
her discomfort due to her abdominal pain from the gas and stool from the malabsorption
or from her neurological condition. In either case we have been working on both
problems by the formula change and a medication to help with agitation. We still have several hours of crying a day
but it is dramatically decreased. She seems much more comfortable now.
There have been several theories examined. The calcium
deposits were concerning for a disease that Lexie may have picked up while she
was expecting. These diseases include things like Chicken pox and CMV. She was
also worked up for Toxoplasmosis which is why pregnant women shouldn’t be
around litter boxes. To our relief these
tests have been negative.
Other tests were done to examine other diseases that may
have caused her neurological symptoms and some truly horrific diseases have
been excluded.
We have now moved on to genetic testing, and there will
likely be tests done after that.
We may not know what is wrong with Quinn for a long time. No
one can tell us how functional Quinn will be in the future. We don’t know if
she will be a normal child, if she will be able to walk and talk and care for
herself. We don’t know what her life expectancy is...
What we do know is... We LOVE Quinn, and we will love her no
matter the outcome. We are going to do our best to make her comfortable and to
help her thrive. Heavenly father sent her to use as a great blessing and he
knew we would love her. We won’t disappoint him and with is help we can get
through this.
Thank you to everyone who has been reaching out to use and
shown so much concern for our family. You have no idea how much it means to
have support from so many wonderful people.
