Our schedule is getting way too full.....

Its like the floodgates have opened.  I spent so long trying to get referrals, trying to find places that could give us some answers, trying to find out the reasons behind why I had this feeling things were "off".  And since we switched to this new pediatrician, things have slowly trickled in.  We got therapy started for Iz and S for their anxiety, S has been getting special ed services at school to help him with his problem areas, S went to cardiology (where we found out those symptoms chalked up to "FTM worry" all those years ago were actual due to a CHD), we got a referral to genetics for all three kids, a referral to neurology for Iz, we started the evaluation process for B (and kept hitting roadblocks *sigh*).  Seems like a lot, eh?

But now?  All of that stuff up there was over the course of almost a year.  But now we have Iz getting a full genetic workup and the geneticist is referring her to neuropsych to get some evaluations.  We discovered a problem neurologically so she's got that 24 hour EEG coming up plus her MRI found that cyst in her brain so she has a pediatrician appointment soon to follow-up on that and decide whether we are going to test her pituitary function.  Her Early Intervention coordinator and EI playgroup teacher are moving forward with repeating her evaluations to see if she qualifies for special ed services next year to keep her in the program because of her speech/social/anxiety issues.  And she has her ophthalmologist appointment coming up as well.  B had his intake appointment with neuropsych and is scheduled for a full evaluation.  S is scheduled for an intake appointment with the same neuropsych.  I finally found a dentist willing to see all three kids (as soon as they hear heart kid, ADHD/SPD, and autism-like behaviors, the dentist offices are "full" or "not equipped") so those appointments are coming up, too.  Plus all of our normal appointments :p  The next month is busy busy busy busy busy :p

Did you see the crazy people in the parking lot?

Two days ago, B and I were holding hands as we crossed the parking lot.  It was a usual scene for us--I am walking slowly because B must hop and twist and shimmy his way across the lot so he can avoid stepping on the yellow lines.  Blue lines are sometimes ok but today he cannot step on them either so it is taking us a while to get just a few feet.  We come to an island and I give a little sigh of relief because we can walk across it and avoid two whole feet of lines and move a little faster.  Our van is just a few spots down so we are almost there.  B jumps off the curb of the island........and lands directly on a yellow line.

He goes absolutely still and then his whole body begins to tremble.  I freeze, my breath catching in my throat as I think about the complete and utter meltdown we are about to see.  B does NOT step on yellow lines.  Ever.  He is shaking hard at this point and I wait for it--but it does not come.  He takes a deep breath and very deliberately steps on the next yellow line.  He pauses, looks up at me and grins and then deliberately steps on the next one.  And I become the crazy person in the parking lot--I cheer for him and we clap together and maybe there may have even been a little jumping up and down.

I told his Dad all about it and yesterday we go to Target.  The Mister asks B if he stepped on yellow lines yesterday and B grins at him and says "yup."  The Mister asks if he can do it again and he tells us, "YEAH!"  We all get out and B jumps onto a yellow line and yells, "I DID IT."  Then he tells us one by one to step on a line (something he has struggled with in the past--not only could he not step on one but neither could any of us) and each time we do he yells out "YOU DID IT."  And there is much cheering and clapping and dancing and yes, we were the crazy people in the parking lot two days in a row.

But you know what?  Being the crazy person in the parking lot felt pretty darn good because B stepped on a yellow line and that is HUGE for him.  It deserves happy screams and cheers and hand clapping and dancing.  I don't know if it will last, if he will continue to be able to step on yellow lines.  But for right now he can and it is still new enough that I will happily be the crazy person in the parking lot :)

I think the universe is out to get me.....

S had his surgery yesterday--he was very nervous but he was a champ about it all. He was very cooperative and they asked him if he wanted a parent to come back with him until he fell asleep. He asked me to come and held my hand until he was asleep.

We took Izzy downstairs to feed her some breakfast and while waiting in line, I started feeling a little sick. I felt perfectly fine up until that point but soon afterwards, I was in the bathroom throwing up. I felt a little off and spent most of the next hour or so in the waiting room with my eyes closed while the mister entertained Izzy. 

When the surgery was done and S was in recovery, we met with the surgeon in a consult room--they successful placed titanium rods in S's two bones so they are nice and straight and have the extra strength to stay in place as they heal. There was one small complication--he had a bump on one of the bones from the healing of the first time he broke it and that was preventing the rod from going in. So they had to open up his arm and repair the bump so he does have an incision along his arm instead of just the two holes at his wrist. 

At that point, I commented on how hot the room was and the mister and the doctor thought it was cool. Someone, I'm not sure who, said I was really pale, and the next thing I know, I am on a bed with people poking at me and I have no idea what is going on. I lost huge portions of yesterday and have only scattered memories of most of the rest of the day. I have been told I collapsed and was very confused. My blood pressure was a tad bit high, I had a fever, and I was in tachycardia for many hours. They did not know how long I was in tachycardia before I collapsed and were worried that my heart was going to be damaged so I was admitted to the hospital for observation. I remember waking up in the Children's ER and asking if I hit my head because it hurt (they said no). And then I was in an ambulance but I have no memory of being loaded up in it. I spent some time in the adult hospital ER. I know I was moved to the cardiac observation unit but I don't remember being moved there. I had many EKGs and blood draws and was hooked up to heart monitors all night. At some point overnight my heart rate finally came back to normal and once it has stayed normal for several hours they did one last check of my heart--no damage. It appears I had a perfect storm of a virus, stress, the onset of a migraine, slight dehydration, and the pain from the infection in my arm that led to the tachycardia and collapse. Scary stuff, my friends. I really do not ever want to wake up full of tubes and wires again and not know what is happening or why :/

I was told that S was sick from the anesthesia and threw up a lot most of the evening but he feels much better today and is glad I am home. He was very worried because he knew something bad must have happened to keep me from taking care of him while he was recovering. Poor little guy :( Izzy had a hard time of it, too, and has not left my side since I got home this afternoon. B just thought he got a fun sleepover at Grandma and Grandpa's LOL