Thursday, July 31, 2008

Dentist


Yesterday Abby had her first dental appointment. We know you are supposed to go when you are 2-3 years old but we had been putting it off. She has started to grind her front teeth pretty hard and had the tooth above her bottom eye tooth ground almost in half.

My nerves were shot before wh ever got there because I just knew she was gonna cry or they were gonna hurt her.

We sat and listened to all the instructions they give to special needs parents like: what to do if she wont sit in the chair, or keeps her hands in her mouth, or bites, or completely freaks out.

Then the dentist laid her back in the chair and said," Open your mouth Abby" and she opened real wide and my husband smirked knowing the dentist was about to lose a finger. He didn't. She sat there on her best behavior and kept her mouth open while he inspected each tooth and while they gave her the flouride treatment. She tongue thrusted the flouride when it first hit her gums but that's it. She was a total Princess. I wish we would have brought the camcorder.

Her teeth that are ground down are still in the enamel so there is no need to do any work on her right now. What a relief!

They were so amazed at how well behaved she was that I fear for them If another Rett Girl comes in. Of course they had never heard of it so they may expect them all to be this laid back. I was amazed to. She takes medical stuff pretty well because she's used to it but nobody has messed with her mouth before. She is such a trooper!


Saturday, July 26, 2008

EEG AND UPDATE


Yesterday we took Abby to Childrens Mercy Hospital for an EEG. Since her tremors and eye rolling have been coming more frequently her Neuro wanted to make sure she wasn't having seizures. And with her overall blank spells and crankiness lately I was anxious to see if there is something else going on with her.

We only got about 3 hours of sleep and Miss Krabby pants woke up just as happy as could be. She ate good and played and watched TV in my bed for 3 hours before it was time to get ready. Once we got to the hospital you would have thought we had taken the girl to Disneyland or something. She giggled and squealed and clapped when we got there. She does it everytime. Yesterday I think it may have been a little more intense since we are down to one car and have been stuck in the house for months except for therapy and appointments.

She tolerated the EEG very well. She held still and smiled while they stuck all 26 electrodes to her head. It was a little harder to get her to go to sleep because she so hyped up. The glue they used nearly made me gag but she didn't seem to mind it. She had no reaction to the flashing lights at all. I had to turn my head and close my eyes. She is a trooper.

She spent the rest of the day as happy as a clam for the first time in weeks it seems. We wont have the report for a week or so but I am pretty sure everything will be normal.

Last night she got 12 and a half hours sleep and woke up Miss Krabby pants again. Darn it. If she could only tell me what it is she wants I would just wave my magic wand and make it happen! I reallydoubt what she wants is 3 hours sleep a night!

I'll keep you updated

Big HUGS!

The Vejrosta's

Thursday, July 24, 2008

Still a Krabby Patty







Abby still isn't feeling well and we don't yet have the cause nailed down. She has severe reflux at times so we know her tummy is at least part of it. She has been having lots of wet burps and loud belches. Her front tooth that is ground down from her constant grinding is concerning us so we finally made her a dental appointment for next Wednesday.
She is basically just not a happy girl right now and for anybody that knows Abby knows this is a concern. She is whining and stomping and grumpling and not eating.
I'm hoping to get it at least somewhat controlled today because she has a video eeg in the morning. I have to keep her up till midnight then wake her up at 4am for a 830 am appoinment. I am so not looking foward to that!
We did get some relief last night for a few hours when my neice Mae and her hubby came over and entertained her outside. This made her happy for a while. She loves to flirt with them both.

I will keep you updated.

Thanks for stopping by. We have changed the settings at the bottom now anyone can leave their name. You dont have to have a blogger account.

Big hugs!








Monday, July 21, 2008

Rett Times

We have had a difficult time with Abby this last week. There are times when weeks and weeks can go by and she gets along just fine then Rett Syndrome seems to hit her a little harder. I wish I knew why and how this whole thing works but Rett Syndrome is totally unpredictable.
In the last week she has all but stopped eating and has lost 4 pounds since her last doctors visit 3 weeks ago. She wont even open her mouth and when she does she eats less than half of a usual serving or meal. She has been very clumbsy and at times has refused to walk at all.
A normal Abby will walk around the house and jabber all day and hit at her toys or follow me everywhere. Lately she seems very content to just lie on the couch.
I was gone last night and her Dad did say he was able to get her to finish a meal so I'm hoping we are coming out of this. It's happened before so I'm keeping my fingers crossed. She is still drinking her supplements so I am not overly worried that she isn't getting any nutrition. She did flirt alot with her Dad last night so that's a good sign.
I am a little worried about her teeth. Her grinding has gotten really bad. She doesn't grind her back teeth she grinds her front ones and the teeth on top next to her two front teeth are really ground down,one almost in half.
Well it sounds like she is finally awake for the day.
I'll let you know how she does.
Thanks for stopping by.
Terri

Monday, July 14, 2008

The Wiggles

Our Miss Abby has discovered The Wiggles. I had tried in the past to introduce the wiggles to her when she was in the deepest point of her regression and she didn't have much interest. Like most things she just kinda looked at it with no response. We have been taping the episodes this week because it is on at 6am in th morning and she just goes nuts. She screams and dances in circles and smackes herself in the head. It's been off for 20 inutes and she is still running through the house screaming and laughing.
I would post pictures but you would just see a streak in front of the screen.
Hugs to you

Tuesday, July 8, 2008

Swimming





















Today Abby went swimming with her therapist Heather. Swimming is just about her favorite thing to do. You can't see from the pictures but she is the darling of the community center.

Abby says almost no words but she will say Heager Heager all the way to the pool.


She is way more responsive mentally on days that she goes, even if she is physically drained afterwards.

In the early intervention program her swim therapy was once a week. Her preschool does not offer it so we have to pay for it out of pocket so we have her going twice a month. I'd really like to have a fundraiser soon but I feel funny asking people for money.

Today while Abby swam I talked to a grandmother who had her grandaughter with Downs also having therapy. That little girl is a rock star. So friendly and functional. I had just got done talking to her about Rett Syndrome and how I so wished Abby could talk. When Abby got out of the pool and we were walking away she looked right at the woman and said BYE!

When we got home I told her father about the incident and told him I was going to the store to get some bread and she squealed and said BREAD! I wish somehow I could record everything and save those little moments. We get 4 or 5 words a year and never know when they are gonna come.
I've attached some pictures of my little swimmer.

Love to you all.

Thursday, July 3, 2008

Check out my Slide Show!

Neurologist




Ok we just got home from the NeurologistWe see Dr Abdelmoiti. He has a long history with Rett Syndrome and has studied with Dr Glaze at Baylor. He was also in the lab when the mecp2 was discovered.Abby had an eye rolling episode while we were there. He doesn’t think it is a seizure. She was sitting at the time. He wants us to start tracking the tremors, when she eye rolls, for how long and if she falls with them so he can get an idea of how often this is happening. he wants up to start putting a helmet on her-which I hate ay home so she doesnt hurt herself. She doesn’t mind the helmet at school but it seems to irritate her at home. He scheduled an EEG for her on the 25th.He said with Rett Sydrome the tremors and the eye rolling is just a part of it. Like the hand washing, hand mouthing, backwards stepping and breath holding. It’s something she can do and she gets a reaction so she likes it.He doesnt want to rule out seizures completely which is why we have to track and why the new EEG.He does want to get her in new AFO’s because of the leg turning.SO we feel alot better.He did confirm that she is still in stage 2 so new things will appear and dissapear still. We expected that. Thanks for checking in.