Wednesday, May 28, 2008

head still spinning

Chicago was great!!

It was also such an emotional rollercoaster for me. In one way I hated being there. I hated hearing about Rett Syndrome all weekend long and I hated being reminded that my daughter has it. But in another way I loved meeting other parents and other beautiful girls and being reminded that I'm not alone. When it was all over Monday I was saying to myself hooray! It's over! But then in the next breath I was sad that I had to go home and return to "normal" life.

The tribute dinner was amazing. I felt like I was at a wedding. It just blew me away that all the people there had a daughter or girl in their life affected by Rett Syndrome, and there we were having a great time together!

I feel like I learned a lot but I still need to process everything. My notes of all the sessions are a mess so I'll need to spend some time organizing everything. One thing I loved hearing over and over was how smart our girls are! They know a lot more than we give them credit for. Riley proved that today by doing a fantastic job identifying pictures this morning. If this conference did anything it gave me the kick in the butt I need to figure out a good way for Riley to communicate with us!

My mind is still a mess from everything, partially because I'm still trying to make up sleep. Riley did not get her best night of sleep Monday night and since we were all in the same hotel room with her, neither did I. Let's just say melatonin doesn't seem to do much good when given in the middle of the night.

But anyway, I loved meeting all the parents and I hope to meet more throughout the year!!

I am not so good with the camera and only took 2 pictures the entire weekend - of the girls sleeping so peacefully when we got back from the hospitality suite Saturday night!

Thursday, May 22, 2008

Chicago here we come!

We're about to leave for Chicago to go to the Rett Syndrome Conference! I am so excited to meet other parents and hopefully walk away feeling refreshed and positive!

The car is all packed up, I just need Addy to pack what she wants to bring and pick Riley up from school and we're outta here. Not looking forward to the 12 hour drive but we'll stop halfway tonight to break it up so it shouldn't be too bad.

Tuesday, May 20, 2008

helmet


We finally got Riley's helmet yesterday! She doesn't seem to mind it at all and it's such a relief to let her walk wherever she wants to go without having to follow right behind her. So far she hasn't fallen down with it on so I haven't been able to tell how much it actually protects her head but that's ok. I can live without her falling all the time!

Monday, May 19, 2008

fun weekend

Friday we had Addy's preschool graduation and Riley was in SUCH a good mood! Maybe she was excited to be back at her old preschool again. She went to school there for a few months until she lost the ability to feed herself and pick anything up, then I was afraid it was too much for her teachers. Anyway, Riley had fun walking around and looking at all the people!
Since daddy was home we took the boat out on Saturday. We thought the bright sun and wind might bother Riley but she had a great time!

I had to add one of Sadie since she never gets her picture taken anymore. Poor baby.

Sunday, May 4, 2008

I hate days like these

Riley is in bed yelling away at the top of her lungs. She went to bed an hour and a half ago, was quiet for a while and now appears to be wide awake. Same thing happened last night at 12:30. Then during the day she is breathing super fast and "eee!"ed constantly. It makes me so IRRITABLE! I wish I knew what was going on and how to fix it. She was sleeping so well up until last night.

Ok crabby post over.

Saturday, May 3, 2008

UAB Rett Center

Our visit with Dr. Percy in Birmingham went pretty well! Thank GOODNESS for my neighbor who came with me so she could keep Addy and Morgan though because we had 7 adults and Riley in a tiny little room for about 3 hours.

I didn't walk away feeling like I know exactly what to do with Riley but I did get all my questions answered so I feel better about that.

Some key points:
  • He said if he were me he would not start the Depakene for the seizures because just about all girls with Rett Syndrome have abnormal EEGs. He said if we notice her having seizures or they increase we can treat them, but it's up to us. And also he did say he thought Depakene was the right way to go as far as medication.
  • Since she is the only girl with her mutation it's hard to predict what symptoms she might have, although he said it's hard to predict anyone's future. :)
  • At this time they didn't see any reason to do a swallow study or test for acid reflux. If we feel she is fussy and it could be reflux he said he'd probably just try medication first instead of going through an actual test. I forget the over the counter medication he named, but I already have some Prevacid I got from her pediatrician a while ago. I just haven't noticed her being unusually fussy so I haven't given it to her.
  • There isn't really anything we can do for her teeth grinding. He mentioned some rubber tubing to try, but I don't really see her chewing on anything like that. He said do NOT let a dentist tell us she needs mouth guards since they can get twisted around in her mouth.
  • There's also not really anything to do for her hyperventilating, breath holding and swallowing air. Just that it usually decreases after age 10. Something to look forward to I guess.
  • Miralax for constipation! Riley will go every day for a few days and then not go for a few days and it just so happened we were on day 4 with no poop on our appointment day so this question was on the top of my head. Actually we were a couple minutes late for the appointment because I was trying to get her to go before we left - and she did (on the potty, woohoo!) but they said we can use miralax when needed. I picked some up last night but haven't tried it yet. Haven't had to so far. :)
  • She weighed 24 pounds which is down 2 pounds from her last neuro appointment in January. They said she looked good though and they could tell she eats well but to be sure to give her lots of fats and sugar to keep her growing well. Actually I noticed a couple weeks ago that she seemed more thin so I had already bought whole milk and instant breakfast so we are on the right track. Her height (I forget what it is) is on the bottom of the growth curve and her weight is below the curve but as long as we keep her growing and proportional I guess she's ok.
  • Therapies recommended are Occupational therapy to hopefully get back some of her hand use and Speech therapy - they said to find a creative speech therapist and that signing doesn't generally work well for Rett girls. I told them that's why I gave her old speech therapist the ax and they laughed and said good for me. :) They didn't stress physical therapy but did say to keep her standing and walking. Riley was definitely not showing off in the walking department that day but they didn't seem overly concerned. She did walk a lot better once we got out of the room though, I think it was just too crowded in there!

I can't think of anything else right now... other than we need to find her a good pediatrician in Mississippi. I do have the name of someone though so I'll try to give that person a call on Monday.

Overall it was a very good appointment and it was so nice to be seen by people who actually know a lot about Riley for once! Our next appointment is in November!

Oh one question I forgot to ask is if they thought she was out of the regressive phase but I really think she is. A year ago she looked like she was so out of it and on drugs and now she is so much more aware. While her walking is shakier she isn't losing skills anymore either. I just wish her teeth grinding would slow down, it's driving me crazy especially when we're in the car!