Lina's health

It has been entirely too long since I have updated this blog..... Pretty sad to come back in November and I still had an Easter background!  Going with generic now since I never know when I will next get to sit down and write.  For the most part all has been well in our household- kids are all thriving in school... Kaylin started middle school this year and LOVES it.... Evan started Pre-K at our home school where Lina and Justin attend and all is going soooo amazingly well... I have been so thrilled with all of them!  Now that we have a consistent schedule five days a week I have been volunteering in school, and it feels soooo good to be back in the classroom and work room again.

I need to take a moment to catch up a bit since Lina had another episode this morning, and to explain things requires more than just a Facebook post.  First I will provide some back story of when this all started....

March 18th: I was in Evan's room getting him ready in the morning when Lina collapsed at the top of the stairs and slid all the way down, lifeless like a rag doll.  Justin saw her collapse and yelled her name- I came running to see her head bobbing limp as she slid down the entire staircase, thankfully feet first.  I rushed down to the bottom where she laid with her eyes wide open, but didn't seem startled as if she remembered falling down the stairs.  I got her up and she acted like she was going to vomit, gagging and choking.  I brought her to the kitchen and sat her down, and she settled down and was fine the rest of the day.  I took her to the doctor for a cold she was coming down with, and the physicians assistant we saw did not seem concerned about the episode.

May 27th: I get a call from school that Lina had a suspected seizure and was being sent by ambulance to the ER.  She had been a bit sluggish in Phys. Ed. class earlier in the day- it was very hot outside.... After returning inside, she tripped walking into a classroom and fell, bumping her elbow.  This is when she then collapsed into her assistant's arms and her eyes rolled back into her head... episode lasting about 30 seconds.  I met the ambulance at school and followed them to the hospital where all checked out just fine.  We followed up with a neurologist who suspected something called a "convulsive syncope" and we think perhaps the incident from March was the same thing.  He referred us back to the cardiologist to make sure her heart rhythms were ok, and when we returned to the cardiologist everything indeed checked out perfectly fine.  Another EKG was run and her rhythms were perfect.  She had first seen the cardiologist shortly after coming home to rule out any heart conditions since half of all babies born with Down syndrome have a heart defect.  Lina's heart was functioning absolutely fine- the tech doing the echocardiogram pointed out the shape of the bottom of her heart where one of the valves was, and that due to the shape he could tell there was once a hole but it healed fine on it's own.

This morning I got Lina out of bed and took her into the bathroom as usual to have her use the toilet and get ready for school.  I helped her get dressed, and then began to comb her hair.  Lina turned to me just as I was getting started and hugged me, as if she knew something wasn't right.  She then collapsed, eyes rolling back into her head.  She was very clammy and looked a grayish color. I laid her down on the floor and the episode lasted 15-30 seconds.  She was then able to respond to me but was very, very weak.  I got her up and she was anxious to get on the toilet again.  First I thought she just needed to sit, but then found out she had a bowel movement since her body lost control.  As she is sitting on the toilet and I am trying to peel the pants off her clammy legs, she can't even hold her head up.  She rested it on the toilet paper roll as I worked to get her cleaned up.  She again acted as if she was going to vomit, gagging and making choking noises.  I got her downstairs where she settled, and had her eat some breakfast.  Once again she acted like she was going to vomit as I spoke to her neurologist on the phone, but ended up ok.  She needed to hold her head up with her hand as she ate but eventually regained her energy.  She stayed home from school today and has been fine since.

Her neurologist wants her to have another neck x-ray to rule out any issues that may have come up since her last x-ray- it is common for people with Down syndrome to have instability in the neck, but her first check when we brought her home was fine.  The neurologist also wants us to return once again to the cardiologist to make sure all is ok with her heart.

I have not done much research at all yet for this convulsive syncope and am almost afraid to Google since you never know what kind of horror stories you will find.  We do need to find out what is bringing these episodes on and if there is a way to prevent them.  Please keep Lina in your thoughts and prayers as we try to find answers.