Tuesday, August 24, 2010

Sleep Study

At our yearly Neurology appointment Abby's Doctor suggested it was time for a sleep study instead of our yearly EEG check for seizures. Since she doesn't have seizures..(knock on wood) Seriously. Stop what your doing right now and knock on wood!
I am pretty sure the sleep study had something to do with the new study that suggests all the breath holding is not actually breath holding but our girls are actually stopping breathing. I am praying this is not the case and that it is some kind of self stim thing. If not, Abby stops breathing for 10 seconds 100 or more times a day. This was my girl when we first arrived. A full size bed seemed huge after all these years in a crib and toddler bed.
She was about 10 percent into the hookup when a lady from child life brought in toys,bubbles and The Wiggles to try to distract her. Thank goodness for The Wiggles. She's not a big fan of blowing soap in her face! Look at her. The Wiggles solve everything.

At this point she has leads and wires on her toe,6 on her legs and a whole contraption around her waist. She was starting to get annoyed but such a trooper as always.

I so hated this. She had two sets of monitors and tubes shoved up her nose. I still can't believe I have to stop people and tell them they need to tell her what they are doing to her before they just go sticking stuff up her nose.

This still makes me wanna cry. Poor kiddo!

This was my Lil Robot Mummy in the morning. I got absolutely no sleep at all. I was ordered to not touch or comfort her if she awoke unless it was a necessary diaper change. I had to sleep on a cot..OK lay on a cot and listen to her whimper and whine through the night.
Of course they wouldn't tell me anything!!! So we wont know for a few weeks if she is having breathing issues or seizures in her sleep.
Fingers crossed! And hopefully no more sleep studies. EVER!

Saturday, August 21, 2010


Abby started Kindergarten this week and it no go at all the way we expected. 3 years ago when we first took her to pre school she loved it from the moment she stepped in the door. I think it is going to take her some time to adjust,and hopefully some extra training for the staff. Fingers crossed~ This was Abby before school. She was so excited she was about to bust. All smiles!
This was my girl after the hour and a half ride to school. She got off the bus looking scared and exhausted.

About mid day. Not loving it so much.

After lunch she was out!

This is the face I got when she got home. Not a happy camper!
But Friday she was all smiles and giggls when she got off the bus. I was so relieved!
Stay tuned and thanks for visiting!

Saturday, August 14, 2010

Miscellanious Ramblings from a crazy person!

Hey all,
Since I imagine that you all just sit around waiting to hang on my every word I'm gonna flow.
Flow? What am 16 yo?
This summer has been absolutely nuts! For me anyways. I have been crazy busy as always. Somehow, even more so.
The last few weeks we have been attempting to deal with random life balls being hurled at our heads from dawn till dusk. Of course I'm the only one ducking. Everyone else knows Mom will get it!

As you know from my last post the kids are getting ready for big school milestones. Abby will start Kindergarten on Monday. Her brother,who just turned 18 will start his senior year. These 3 things alone have made me want to run for cover. Can someone else please deal with all this?

Abby has been having issues. Rett induced I am sure..Boy if I ever get ahold of that Rett Syndrome I am gonna KICK IT"S ASS!
Ever since we got her Gtube after her failure to thrive issue last year it has been one thing after another. I know if I hadn't gotten it when we did we wouldn't have her now but..man it is a royal pain.
She has all but lost the ability to chew and swallow, so food is something that happens a couple of times a month. She has slow motility and constant bowel issues. She is either impacted or poop soup. No in between. Just when we think we got everything where we want it..whatever we are doing stops working. Wait who's we?
For a few weeks now she has been suffering from what I assume is severe pain. My happy lil camper is a screaming banshee more often than not. At first I thought it was some sort of Rett anxiety thing or panic attacks. We have been to the doctor and the hospital and another hospital. We think we have it narrowed down to GI issues. At this point I just don't know what to do to help her. We have a overnight sleep study on Wednesday and a GI appointment in 2 weeks. I don't know if we need a formula change, a medicine change or both. The thought of sending her to a new school for more than double the time she is used to, in this state, is nerve wracking. How in the world am I going to convince a new team that she is in there, she can learn and she is a wonderful child if I send a lethargic, wild screamer from day one? Seriously. That's a question. Does anyone know?
Between the two of us we had 9 appointments this week...School,training,doctor,hospital,shrink,hospital,school,hospital..ugghh You try doing that with no car! Not easy. Oh, we have a car. One car. My husband works 18 miles a way 16 hours a day in the opposite direction of most places we need to go. And then there is the fact that the piece of crap car has no air conditioning. What no air? But it's 110 there everyday!

SO speaking of me being crazy... I will admit..I am on an antidepressant. Have been for years. Last year we took me off the med I had been on because it wasn't working and switched me to something else. A few months later the doc doubled the dosage. Within a week I called and told him it was too much. I was lethargic and couldn't think straight. So they cut it in half. Yah right. Sure they did. Apparently they called in for the half mark for just that one month and for 6 months since I have been on the double dose. No wonder I feel like crap! Maybe if I wasn't so doped up I could of read the bottle and noticed the error! Next week I start a different one in hopes that I can drag myself though this hell of a hand we've been dealt. I do have enough sense to wait till Abby's been in school a week..Love those med change dizzy spells!
Ok that's my flow. I'll break it down fo yo again real soon! Hit me up for realz!
Yah ok I'm done.

Friday, August 6, 2010

My babies

I knew this time would come from the moment I had my children but it is hitting me like a train wreck. I am so not prepared.
I knew when I was pregnant with Abby that I would have one going into kindergarten when the other was entering his senior year.
I knew in the past that he would be 18 when he graduated but it never hit me till this week that all this was going to happen at once.
My baby boy will be 18 tomorrow. 18. The lump in my throat is about to strangle me. He doesn't seem the same 18 I was if that makes any sense. In most ways I think God for that. That he didn't have to go through or see the things I did. On the other hand....I never had to deal with what he did as far as being the only child then having to share your mother with a new baby. Then to find out 2 years later that that child would need every minute of your mothers time and energy from that moment on.
Abby will be entering kindergarten next week. The very same day Kyler starts his senior year. She will be entering the multi disabled functional classroom. Ouch that one...SUCKS! No plan you can make for that one. Definitely not something you dream about.
Over the years I kept a book for Kyler and a collection of letters. I planned on giving him them tomorrow. That's not going to happen. Maybe when he's 30 and can remember where he put them.
So Ive been keeping busy. I've been handed a project that requires time and research and I'm loving it.
That's where we are....