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A Year Later...

Well, I've been so busy for so many reasons I don't even know where to start.

How about where I left off?

Ok, good.  So...  Little Man is doing wonderfully with his CPAP!  Sleeping in his own in bed and not having massive meltdowns in the middle of the night.  We've had a few sleep studies and made adjustments since then and we have another one that will be scheduled soon.  Thinking we need to change to a full mask and increase pressure a bit.  He is getting discharged from Speech Therapy this week!  Was discharged from PT & OT provided by the school at his IEP meeting this past week, too.  I'm so proud of the progress he is making!

Not sure if this was mentioned before, but myself and all three of my kids were diagnosed with Ehlers Danlos Syndrome this past year.  My daughter was also diagnosed with Postural Orthostatic Tachycardia and my youngest is being tested to rule out a Pheochromocytoma and Mastocytosis.  Mastocytosis is most likely the culprit.  

Today, I got to visit with my Oncologist.  I get to drop down to monthly injections with infusions as needed. I was going weekly, but my blood levels seem to be stabilizing!  Yay!!  I started PT last week and am currently on day 19/30 wearing a heart monitor.  Also, I'm no longer on twice a week allergy injections and only have to go once a week now!  So much fun going on around here!

Looking forward to tomorrow.  The only appointment outside the house is for a Cub Scouts meeting tomorrow evening, so the plan is to get a bit of rest, but to work on posting new items to Peanut Sprouts and to get some house work completed.

For now, I'm headed into the kitchen to check on the Corn Chowder that's slowly cooking in the crock pot.  I think its going to turn out to be more like a cheesy corn soup, but it still looks and tastes great so far.  I will post a photo and recipe that I used tomorrow.

Until then... Have a blessed evening.

Life is such....

So, my youngest started using a CPAP almost 3 weeks ago.  Things have been hectic.  He still wakes up at his normal intervals, but instead of being able to just tell him to go back to sleep, he has a massive FREAK OUT session and keeps his eyes closed through the whole thing.  On several occasions he's gotten combative, but mostly he just screams and bats at whoever and whatever is near him.

Friday, I finally got a phone call from one of the 5 doctors and therapists I've called over the week. Gotta love the holidays and everyone takes the whole week off.  His ENT suggested we try melatonin even though we both agreed it probably would not work since its been tried in the past and isn't something normally used for sleep maintenance.  He falls asleep no problem, its staying asleep we have issues with.  Major Issues!

The past two nights he's taken the melatonin (after a lot of coaxing).  Both nights he's fallen asleep earlier, but still waking up every 1.5 - 3 hours.  To me that seems like a sleep cycle problem.  Tomorrow, I plan to call the neurologist and see what he thinks.  We'll be out that way for a chiropractor appointment so maybe he'll be able to see him tomorrow and save us a drive out there.

We shall see...

My weekend is NOT how it was planned.

Good Gloomy Morning Folks!

Up until last night my weekend was going exactly as planned.  Baby sitting last night, Susan's lesson today followed by helping out at the Autism Foundation's Santa visit, then back home to drop off Morgan at his friend's house for an overnight birthday party and then Sunday is the Christmas program at Church.  I'd even offered to take a friend's kids to meet Santa if their Dad decided he couldn't.

At 7pm last night that all changed.  I got a phone call from a Dad stranded in Missouri due to the weather, their Mom is 'out of commision' this weekend and can not be reached.  So instead of Dad saying he was going to try to come home he just flat out said he's not coming home at all this weekend.  Now I have 1 too many kids to fit in my truck.

Luckily, Mom and Dad are taking Susan to her riding lesson this morning, but helping out at AFT is out and that means Ethan most likely will NOT get to meet Santa this year.  Sadly, this is the first year he's shown any interest.  I had to withdraw my offer to take my friends kids to see Santa, so I'm praying their Dad steps up and takes them.

The worst part is that because of the cold, damp weather coming in, I started having a horrible headache around 2pm that tried to go rogue and turn ocular. By 3pm my joints were starting to hurt and I was getting some anxiety thanks to my thyroid being a bit more inflamed than normal.

With all that being said, I survived last night.  I was able to combat the joints and thyroid enough to get dinner on the table for 4 extra kids.  Right now, I'm working on a BINGO game to get the house back together after this crazy busy week.  Susan's already left for the day.  Ethan is up and dressed playing in his room and the other 3 are still asleep.  Hopefully I have at least another hour or 2 before they all decide to wake up.

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