Friday, March 22, 2013

World Down Syndrome Day

yeah, I know it was yesterday. Hope everyone had an awesome 3/21.

Here is my cutie pie that introduced me to the world of Down syndrome...
This was right before Sam was born.  Back when Max was my one and only.  I love all my kids to pieces but I have to say I still miss those days of just Max and I hanging out all day during our thing.  Which as most of you know really consists of OT, PT, Speech, doctor appointments, playgroups, play dates, etc...  :)

We went out to eat last night and the waiter saw Max and said, "today is Down syndrome day, right?"  I thought that was awesome.  He said he had watched a film the day prior in one of his classes.  I think the film was the one that our local Down syndrome guild made.


Wednesday, March 20, 2013

Walt Disney World and pneumonia

Happy 1st day of spring!!
I'm so happy it is officially spring.  I love this season.  Soon we will be outside playing in the dirt :)  Too bad it's freezing outside still.  It snowed yesterday.  During spring break it snowed!

We went to Disney World for 9 days the first of February.  It was our worst vacation.  Max had been sick the week prior.  In fact he had missed that whole week of school.  He had pneumonia.  I had taken him in on a Monday (he had been sick for 2-3 days before that) to the doctor because he had the most awful sounding cough.  I was thinking he had pneumonia... I am good, right?  They tested for flu and strep, which were negative.  I'm the one who suggested xrays for pneumonia. He started antibiotics and had a follow up in a few days. He really did not improve that much. He got a new antibiotic and a couple of shots of a different antibiotic.  He seemed to be improving so we left for Disney early Friday morning.

We had a 2-3 hour layover.  We ate at the airport while waiting.  Max only ate about 3 french fries. When we finally made it to Disney World that evening we were walking up to check in for our cabin and Max started throwing up. Saturday morning I called the on call doctor back home.  She called in yet a new medicine for him to a pharmacy I found that delivers!  This one had to be taken with food otherwise he threw it up.  And really he was throwing it up anyway, no matter what.  I had to force him to take a few bites of something to take his meds.  It was awful and took forever because he wanted nothing to do with food.  By Monday I was ready to take him to urgent care. The doctor said give him about 24-36 hours and if there was no improvement to take him to urgent care.  I gave it one more night.  Tuesday he still just laid around and slept. I finally called urgernt care (that comes to pick up patients) Tuesday afternoon.  I was also getting sick by this point.

Saturday Pete took the other 3 kids to Magic Kingdom while we let Max sleep in.  Max and I met up with them after lunch.  But Max was miserable the whole time.  Sunday we made a late start and went to Hollywood studios. Again, he was sick and miserable.  I had carried him on my back pretty much the entire 2 days so far. Monday I took the other 3 to Epcot while Pete stayed with Max.  I started to feel sick that afternoon.  We almost left a line that we had been in for about 45 minutes because I felt like I was going to pass out then once that passed I felt like I was going to throw up.  I am sure the people around us were thinking, "stay away from her!"  We made it to the ride and left shortly after that.

I had already decide I was just going to enjoy the trip and not take a ton of pictures.  I did take these with my phone..

Gosh, my kids are strong!

Tuesday Pete took the 3 kids to Animal Kingdom and I stayed at the cabin with Max. Like I said, I felt bad too and had a fever so I was fine with staying back.  I was told when I called urgent care the wait was 4 hours. But what else was I going to do??  It took about 3 hours of waiting.  I was tested for flu and strep.  They were negative so they just treated me as if I had bronchitis or pneumonia since Max had pneumonia. as for Max there was nothing more they could do for him so they sent us to an ER at Florida hospital in celebration, FL.  Max got an IV, started fluids and a dose of meds.  We were there for 5 hours (by the time we got there it was midnight).  He then got transferred, by ambulance, to another hospital, in Orlando, that had a children's department.  Why did they not take us there in the first place? I don't know.  That ambulance ride was $700.

Ended up Max had streptococcus pneumonia, mrsa.  Meaning it was penicillin resistant. Fun, right?  Max and I finished up our Disney vacation in Florida hospital.  We flew out Saturday (on my birthday!) so the doctor ordered our release forms the night before but for Saturday before our flight.  That way Max could get another couple of doses of meds.  We got out early, like 7 am early that morning.  Our flight was at 7ish that night.

By the time we made our way to the airport I could tell Joe was feeling sick.  By Monday Joe and Sam were both sick. Took them to the doctor and they both had strep throat. about an hour later Ike spiked a fever.  I called the doctor and he got meds too.  We were all on meds but Pete!  Long story a little shorter... They ended up having strep throat they think was penicillin resistant plus "some" virus on top of it.  They all had awful coughs!!  I also got sick again and got treated for an upper respiratory infection.  That was an awful week with several trips to the doctor and many trips to the pharmacy.

We finally all got better but it took awhile.  In fact I still have a cough but it is fading.  Max had sores on his butt from being in the hospital on his back for 5 days.

It was not a fun trip!! At least the 3 healthy kids got to visit all 4 parks.  I don't think Max remembers any of it though.  Pete took the kids to Sea World while i was with Max.  They did not like it.  It cost $350 for the 4 of them to get in and the kids were mostly too small to ride any rides.  They saw the whale show.    It was a very expensive trip!  However, we bought travel insurance so they are (should be) covering medical expenses and part of our trip for "trip interruption".  I have filed half of that but not any medical stuff yet as I don't have all the bills for that yet.  Fingers crossed we get a good chunk of our money back.