Around Christmas Dallas starting walking small stretches at a time... A Christmas miracle indeed! At that time she was about 50% walking and 50% crawling. She has since progressed to 100% walking, albeit with a wobbly gate, falling often (but quickly popping right back up!) and occasionally using walls and furniture for stability. She has improved so much with her fine motor skills, and her speech has come a long way!

On Monday this week, Dallas woke with a fever that lingered until this morning. We managed it with Tylenol and while it climbed to the 102+ range a couple of times, it stayed between 99.6-101.3 fairly consistently. She has shown no other “sick like” symptoms with her fever; none. 

She was quite clingy on Tuesday and wanted to be held more often than usual. She became a bit more unstable on her feet and reluctant to do much walking. Although she was in great spirits we assumed perhaps she did not feel well and wanted to be held more. By the end of the day we started to gather that her desire to be held was due to her struggling to walk on her own (that was the only other symptom that we noticed). 

Our first thought regarding the walking regression was that she was likely fatigued from whatever she may be fighting off, but her energy has been great and she's been otherwise quite active. So the other question in the back of our mind was... "is this a neurological response?"

We decided to get an AirBnB in Chapel Hill yesterday afternoon for a few days, just to be on the safe side in case anything changed in her condition, and we’d only be 10 minutes away from her Neuro docs. This seemed a bit overly-cautious, but after looking back at her previous symptoms/fever temps prior to the initial episode, we noticed they were fairly similar (i.e. it doesn't take a super high fever or severe illness to trigger an event to occur). 

She woke this morning with a very low fever, only in the 99’s, but we noticed she seemed even more unstable on her feet than previously observed yesterday. With that, we took her into the pediatric ED mid-morning for a viral panel and urinalysis to see if there were any viruses/bacteria present that could be causing this, and to give us some answers. 

Once checked into the hospital, her fever was actually gone and has remained in a “normal” range all day. Her panels ALL came back normal/negative, so we’re just left scratching our heads looking for answers. 

Dallas remained unsteady/unstable in her walking and standing this evening, but it doesn’t appear to have gotten any worse. She is in great spirits and just as sharp mentally and cognitively as ever. Her words and speech have actually been the best they’ve ever been over the last week or so, and that hasn’t really changed since the onset of the fever on Monday. 

This is the first time since being discharged back in July of last year that Dallas has had any “sick” like symptoms and we just have no answers as to what caused it. 

With the fever appearing to possibly now be gone, we’re optimistic that maybe the monthly IVIG infusions she’s receiving are what’s helped to kick whatever this is/was out of her system. 

We’re going to remain in Chapel Hill for a couple/few more days and will continue to closely monitor her for any other changes. We hope that with her catching up on a lack of sleep, eating some yummy foods, and enjoying some of the Carolina Blue skies in the park tomorrow will help her to be on the mend and continue to make improvements in her walking and stability. 

“Everyone falls down. Getting back up is how you learn how to walk.” -Walt Disney 

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As a reminder, this page is intended for updates only. Please know that “Tributes” made to CaringBridge do not go to Dallas. More than anything, we appreciate your thoughts/prayers and staying connected to cheer on our baby girl!