What we know so far…

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.

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.