A whole lotta ups and downs

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A lot has happened since the last time I posted and today was especially difficult.

Genetic Testing
The mitochondrial results came back showing no abnormalities, which leads us back the autoimmune route. 

Growth 
We met with an endocrinologist last week, who was very eager to help us. We will be doing a number of labs as well as a growth study. This is a 6-hour infusion session, where they take her blood every 30-minutes. I have been told it can be pretty rough and we are not looking forward to it, but hope maybe this can give us some insight into what is going on with her cute little body. 

COVID
It finally got us, well all of us except Pete. It started with Maddie, made its way to me, and then after doing everything we could, our sweet Ellie got it, her symptoms started a full week after mine--which made for an extra long quarantine. Ellie ended up with a fever for 11 straight days and double ear infections, plus all the vomit one could handle. We’re thankful to be over it and that Ellie’s condition did not worsen. 

Swallow Study
We finally did the swallow study today, a full month after we were originally scheduled, since our COVID debacle. It was not great news. We were concerned that she has been aspirating and liquid was getting into her lungs, unfortunately the study confirmed this. Our care team is going to work on a plan and we will regroup next week. One of the possibilities we need to start thinking about is a feeding tube, which makes me sick even thinking about.   

PT
We had our six month evaluation today to see where Ellie is progressing. While we do see her strengthening some of her skills, the tests are pretty black and white, looking at what she can do without assistance. Since she is unable to stand, crawl, pull herself up, etc., her gross motor skills scoring puts her at under 1% for her age (19 mos.). 

NIH
Never in my wildest dreams would I think the NIH would be interested in anything to do with our family. Well, they have reviewed Ellie’s records and are interested in collaborating with our rheumatologist on her care. We will be starting with labs next week and hope to learn more over the next several weeks. 

Seattle Children’s 
We leave in the morning on our way to Seattle. Our appointments with neurology and rheumatology are Friday afternoon, and we are really eager to see what they have to say.

We are beyond thankful for everyone’s continued support. Our Ellie is loved by so many and we can truly feel it. 💗 











Comments

  1. P.L. ParkerFebruary 25, 2022 at 3:31 PM


    sending so many prayers for your little one and all of you. Patsy

    ReplyDelete
  2. UnknownMarch 8, 2022 at 11:38 AM

    Thinking of you and keeping your family in my prayers.

    ReplyDelete

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