Monday, December 22, 2008

grapes

I just realized the last picture I took of Riley was on December 5th when we were going to get our tree. Oops! I will have to make sure I take lots on Christmas Eve and morning!

We have been soooo busy lately and it's making me tired and crabby, which I don't like. I usually like the busy-ness of the holiday season but this year I feel like I'm moving a million miles an hour in different directions constantly. It's making me sad that the time is passing so quickly and Christmas Day is almost here and before I know it it'll be over.

Anyway, Riley is doing pretty well. She has been fairly grumpy and hasn't eaten much for the last couple days so I wondered if she was getting sick but at lunch today she ate a billion grapes and now she's happy as can be.

So I guess she just wanted grapes. :)

Wednesday, December 10, 2008

long overdue

I haven't been very good about blogging lately. Mostly because some things were sort of getting to me and I needed to take a break. But I've talked to people and I know they use this blog to stay updated so I will try to be better about posting more often!

I've also been feeling sort of blue the last few days. I made a batch of Christmas cookies the other day and was remembering when I made the same cookies last year. Riley was sitting at the kitchen table and I put a snack I knew she loved on the table in front of her and didn't understand why she just kept crying and wouldn't pick it up to eat it, yet she'd eat it when I fed it to her. It was the first time I realized she could no longer use her hands to feed herself, and what drove me to later call her neurologist and make an appointment which led to her Rett Syndrome diagnosis.

So while I love this time of year, this year it's making me feel a little sad. But on the upside I am glad to have a diagnosis and to not be constantly wondering what is going on with my little girl!

I also got a little pick-me-up today when a letter came in the mail that Dr. Percy sent to Riley's pediatrician. It's always nice to hear good things about your daughter! I won't write out all the GI and seizure medication details he went through, but the second half of the letter reads:

"We completed our clinical inventory and noted her to be alert and interactive. She was quite appropriate. She is not using her hands for any functional activities, but continues to ambulate easily. Her back is straight and she has gained a bit of weight such that her BMI is now at the 10th percentile having been somewhat below that prior to this visit."

No major progress or anything but hey, no more regression either! I'll take it!

Monday, November 24, 2008

over the river and through the woods!

We are at Grandma and Grandpa's house! We made the drive overnight Friday night and were up in Northern Wisconsin by Saturday morning.

One of the great things about Grandma and Grandpa's house is the wall of mirrors! Riley has so much fun looking at herself! :)

Tuesday, November 18, 2008

the football player?

Riley's Thanksgiving Feast is tomorrow and the school sent home a note of what item we are supposed to bring.

It always makes me laugh how people butcher our last name. :)

Friday, November 14, 2008

Our 2nd visit to UAB

Yesterday was our 6 month appointment at the UAB Rett Clinic. The good news is Riley is growing well! She weighed 27.2 pounds and I can't remember how tall she is now. But she is staying on the curve, even if it's at the bottom.

They also recommended we start giving her Miralax often, as well as gas drops or GasX. And we can increase her dosage of Prevacid and give it to her twice a day. The prevacid seems to have helped her not be AS crabby but she still is a super crabby little girl. Especially in the evenings. We had one night a few nights ago with no crying and even some smiling - she was giving us high fives and so alert and aware. If we had more days like those I'd be in heaven but they are so few and far between.

I really think something is going on with her stomach so hopefully giving her all this stuff will help!

Morgan got to go with us yesterday and at first was a little scared of Dr. Percy but by the end of the appointment she was having him put her shoes on for her! :)

Thursday, November 6, 2008

sick


Riley is home from school because she's sick today. I guess if there's a good day to stay home it was today since Mitch had to leave at 4:30 this morning for the airport and I would have had to wake up Morgan, who is also sick, to take Riley to school. As it turned out Morgan slept until 10:15 this morning, 3 hours later than usual! And yes, I did check to make sure she was still breathing. :)
Riley is currently on her second nap of the morning. Lots of sleeping and just hanging out going on around here today.

Tuesday, November 4, 2008

thrilled!

Doesn't Riley look so happy to be on the swing?


Actually she was, it's just not a very good picture. :)
Thanks to a wise Rett mom, who happens to live near me, we started Riley on Prevacid last week and she has been much happier. It was getting to the point where she'd cry through breakfast which is normally her best meal of the day. The other mom mentioned acid reflux and I had some prevacid samples hanging around so I tried it and within a day or two we were back to only having our evening fussy time instead of ALL DAY LONG. So that's nice.

Friday, October 31, 2008

Happy Halloween!

Riley's school had fall fun day today so she got to wear her costume! It's hard to be very photogenic at 6:45 in the morning, but she was still pretty darn cute.





Addy wanted to wear something either orange or black and all she could come up with was this Christmas dress... (excuse the flash on the beads of her dress!)



At least her hair bow had candy corns in it. :)


Monday, October 20, 2008

peaceful bliss

Riley was sound asleep when I went to get her ready for school this morning. I hate waking her up - she is so peaceful when she's sleeping! Her breathing is regular and everything seems perfectly "normal".

Thursday, October 9, 2008

school picture time

Riley's school picture turned out so good! I had to laugh though because they were obviously holding her right arm back to keep it out of her face. But I just love the big smile on her face! Her pictures at school don't normally turn out so well so I had ordered the smallest package of pictures and now I wish I ordered more!

Saturday, October 4, 2008

October is Rett Syndrome Awareness Month

In our family we are all very aware of what Rett Syndrome is.

Please take a minute to visit Riley's web page at Girl Power 2 Cure

http://www.girlpower2cure.org/riley

We believe a cure to this devastating disease is within our reach but it cannot happen without much research and for that we need YOUR help! Please consider making a donation on behalf of Riley - just visit her webpage at Girl Power 2 Cure and click Donate. All donations are tax-deductible and go directly to Rett Syndrome research - it can't get any better than that!

We would also love for people to sponsor a drug - to find out more just go to

http://www.rsrt.org/news/Sponsor-a-Drug.html

Thank you all for your support on this!
Mitch and Erin

Friday, October 3, 2008

busy busy

Things have been crazy busy here this week so not much time for blogging. I will catch up soon but for now just wanted to post some pictures of Riley having the BEST time at dinner the other night. Dinner time is not usually her best time of day - just worn out from the day I guess. But the other night I let her nap first and then we ate later and she was in such a good mood, I loved it!
As usual I took a million pictures and can never decide which ones to post and which ones to leave out so here's a bunch. :)





Wednesday, September 24, 2008

feeling crafty

I've been in the crafting mood lately but haven't been sure just what to do. I want to get more involved with this awesome organization called Girl Power 2 Cure. They raise funds for Rett Syndrome research - you can check out Riley's page at http://www.girlpower2cure.org/riley

So just for fun I printed out their logo and whipped out some of Addy's craft foam and made a magnet! Ok I know it's a total kid's craft but I didn't say I was a talented crafter. :)

(sorry about the glare - flash at night on a fridge doesn't work all that well)

Monday, September 22, 2008

school, church and special needs

I didn't really know what to title this post. :)

I got an email from Karen Patterson of http://www.eyesplease.com/ asking me to put together some info about Riley for Riley's teacher! Karen spoke at the SE Rett Conference back in August and we gave Riley's teacher her information and they've been talking. I can't tell you how good it makes me feel to know Riley's teacher is doing everything she can to help Riley and to get her to communicate with us!

Also we are checking out churches in the area and decided to try one yesterday. They had an article in the paper written about them a few weeks ago because they started a special needs ministry there. Normally Riley will sit with us in church but that is getting more and more difficult so I wanted a place where I can feel comfortable leaving her. Well this is the place! I met a few other families with special needs kids and Riley was WELL taken care of during Sunday School and during the service. They actually have her in a sunday school class with her peers and have someone there to shadow her and help her. She loved it! She was all smiles whenever I saw her and was walking around all over the place. And luckily they have tons of kids there so Addy was happy and even Morgan had a good time after she got over her initial separation anxiety. :)

It happened to be a Sunday that a man got up and talked about his own son with special needs which was just coincidence. He touched on some things that rang so true for me. He was honest and said at times it's been hard to feel love for his son. I have been feeling so guilty because there are times I feel just like that and it was nice to know I'm not completely alone.

They are holding a conference on their special needs ministry for teachers, parents and other churches in a couple weeks and we may try to go. To me there's nothing like getting together with other people who truly understand what it means to have a special needs child.

Thursday, September 18, 2008

playing dressup

I've been a bad blogger! So how about some pictures of the girls playing a little dressup together! Does Riley make a beautiful Cinderella or what?!?



Morgan was not having any of the group picture.

Monday, September 8, 2008

NOLA

We had planned on going to New Orleans over Labor Day weekend but Gustav made us postpone our trip to this last weekend. It was still fairly quiet but since this was our "kid trip" it was actually kind of nice! The aquarium was even running a "welcome back" special so tickets were only $5 each, not bad!

We didn't get there until 8:00 on Friday night so after Riley devoured some chicken nuggets from McDonalds (yum, right?) we headed out to Cafe du Monde. Riley didn't really get into the cafe au lait's or beignets although the rest of us sure did!

We figured the only time to visit Bourbon Street with kids would be early in the morning so we hit it at about 10:00 on Saturday - it was nice and quiet and they loved watching the horse drawn carriages.
Jackson Square was pretty but hot and everyone (especially Riley) was a little crabby. Apparently it was naptime since she fell asleep in the stroller as soon as we left.
Next up was the Aquarium and this picture shows how much her eyes lit up when we first saw the fish. I've said it before but I so wish we could have a huge aquarium in her room!
My little starfish


Saturday night Grandma stayed in with the kids and Mom and Dad got to have an adult dinner at Mr. B's Bistro (which was DELICIOUS) and then we walked around Bourbon Street. Quite a different picture than what it was that morning. :)
Sunday we drove around the Garden District, ate a small lunch and then a big dessert at the Creole Creamery, drove around some cemeteries and headed home. I wish we had more time there, the kids seemed to like it and there was so much we didn't see. But I'm still glad we got to go!

Friday, September 5, 2008

week one down!

Riley has now been on her seizure medication for one week, which is the time it takes to get in her system. Right now we are giving her one dose at dinner and now we're supposed to increase that by giving her a dose at breakfast as well. We're waiting to see if she is still having seizures though.

So far so good - we haven't noticed any in a few days. This morning she was crying and holding her breath at the breakfast table and that typically leads to what I think is a seizure and it didn't. X your fingers the seizures are DONE, at least for now!


Tuesday, September 2, 2008

sick again

I think Riley is trying to win the record for days of school missed the first month.

Boo.

Friday, August 29, 2008

Crawling!


Riley has not crawled in months! Lately it has become increasingly difficult to get her up on her hands and knees. I admit, I'm bad and don't make her do it all that often. But today after her nap she was just laying on the floor so I rolled her over and put her hands down on the floor. To my surprise she pushed herself up and then brought her knees up all on her own! She moved her right arm and then her right leg and fell forward to I put her up on her hands again and again she pulled her knees up. This time she crawled a couple of feet, I couldn't believe it! She was so determined too, she concentrated so hard. So cute.

Ah, the little things that become big things!

Monday, August 25, 2008

overdue update

Things have been sort of "blah" here so no posting!

Grandma flew in last Thursday night so that is exciting!!! Unfortunately we've all been sick - starting with Morgan, then Riley, now me! But we still managed to do fun girl things like shopping and eating yummy food.

Today Riley had her first appointment with the neurologist in Mississippi and we really like her! She is very friendly and easy to talk to. I am 99% sure we are going to start Riley on seizure meds in about a week. I had her blood drawn and now we are just waiting to see what her liver and carnitine levels are like before we start. The neuro said we can go ahead with the video EEG if we want but we are fairly positive she is having seizures so we don't really see the need right now. She also said the most common side effect with the seizure med she prescribed (depakote) is increase in appetite and weight gain. Not necessarily a bad thing for my 25.8 pound girl! Riley will also take carnitine as a supplement to help offset any possible bad side effects of the depakote.

Anyway, I'm feeling pretty good about it now, and I understand it all better.

One little picture of Riley watching Addy on the slip n slide. We managed to get a little outside time in before Fay took over and it started raining for the last few days!

Wednesday, August 13, 2008

ridin' the bus

In the interest of saving gas (and time, I guess) I thought I'd let Riley try taking the bus home. She doesn't seem to mind at all!


School is going well - one week down now! Her teacher sends home a little progress report every day which is nice since Riley can't exactly tell me what she did that day. Most days she needs a short nap in the morning - it's hard getting up at 6:00! She's also been eating foods she normally wouldn't eat at home - like spaghetti.

So far she's been having good days. Today's note said she was moving more independently around the room so that's great! We love school!

Here is a picture of what happens when you leave your 17 month old alone for a minute and a half to upload pictures. Mitch is surprised when I don't have the house spotless now since Addy and Riley are in school. I told him Morgan needs to go to school too before that's going to happen!

Thursday, August 7, 2008

First Day of School!

It went great!

I woke Riley up at 6:00 so she had enough breakfast and then she napped in the car while we dropped off Addy and went to her school. Her teacher said the first hour she just kind of looked around and got used to the place but she laughed for the last 2 hours. I'm sure not every day will be a great one but it's nice to start the year off right!

There are 4 other kids in Riley's class but only 3 of them were there today. One little boy and the rest GIRLS so yay!
The sun was totally in her face but she looked so cute walking out of the school with her backpack on her back I couldn't resist taking a picture!

Tuesday, August 5, 2008

IEP scheduled

Ok so it looks like Riley will be starting school this Thursday afterall! Her IEP is scheduled for tomorrow morning. I feel so unprepared for it. I hope we like this preschool as much as we seemed to when we visited last April!

Monday, August 4, 2008

school time!


I finally got a call from Riley's school and as it turns out her first day is Thursday too! Yikes!

I don't know if she'll actually go on Thursday because we don't have an IEP done for Mississippi yet. I need to get them some information and then they'll call in a day or two to schedule it.
Summer is coming to an end. No more sleeping in. Not that Riley sleeps in much anyway but her usual wake time is between 7:00-7:30 and now she'll have to be out the door by then so we'll probably have to get up at 6:00 to make sure she eats enough breakfast first. I'm tired just thinking about it...

Sunday, August 3, 2008

pool picture


I didn't take any pictures at the conference but I did take some at the pool last night. It was 10:00 before we went in and Riley was yawning the whole time but she loves the water and had a blast!

SRSA Conference

We are here in Birmingham and attended the Southeastern Rett Syndrome Alliance Conference yesterday. It's always nice to hear from experts on Rett Syndrome and get together with other families going through the same thing we are going through!

I also got to meet Avery, Carrie and Gigi! Avery is so adorable and a big bundle of energy!

I really got a lot more out of the Chicago conference but I was glad to listen to the session on nutrition again. We feel like something is going on there with Riley - she just has so many episodes of crying where she seems like she's in pain but won't eat and we don't know what's going on.

Another great session was about using cards for communication, at least as a place to start. We really need to get started on the yes/no cards and I don't know why we haven't yet. If we could get Riley to communicate somehow I think it would be a HUGE help in how we can help her on a day to day basis.

The sibling panel was emotional as usual and I'm sort of glad I had to step out to help a crabby Riley during the last part of it when I guess it got really emotional.

After the conference we ate and then enjoyed the tax free weekend in Alabama to buy Addy's school supplies. She starts Thursday, I can't believe it!

Tuesday, July 22, 2008

Fun at Grandma and Grandpa's

We are still recovering from our long trip up to Wisconsin! We drove through the night Friday night and slept all day Saturday. I don't think we'll do it again anytime soon, we were all TIRED!

The weather is MUCH cooler here than in Mississippi but it feels nice now. Addy is the only one brave enough to swim in the lake but the rest of us are content to sit on the beach and watch.

Last night we made a campfire down by the lake and roasted marshmallows. Riley loved them!


Wednesday, July 16, 2008

giving props


Riley has been so much happier since we started giving her Miralax every day. Many, many poops later and she's eating like normal again. Her seizures are pretty much gone too. Yay. Makes for a much happier mama!

Friday, July 11, 2008

doctor visit

We met with a pediatrician today. The main purpose was to have her get to know Riley so she can write prescriptions for therapy as needed. She also sees another girl in town with Rett Syndrome so I felt good about going to her.

She pretty much confirmed that Riley is having seizures, since Riley had one in her office. I've noticed an increase in the last couple weeks so I'm glad we had this appointment scheduled. Riley has also been more crabby the last couple weeks and she thinks it's due to constipation so we're supposed to give her Miralax every day to see if that helps. Maybe it's all tied together and hopefully the seizures will decrease too.

She put a call into a neurologist here so we can have a 24 hour EEG done for Riley. She'd like us to wait to start any medication until then but it depends on how long the wait is. I really only notice the seizures in the mornings and they only last a couple seconds so I'm not too desperate to start medicating her yet.

The good news is Riley is back on the curve for both height and weight. She is 37 inches and weighs 25 pounds, 12 ounces.

Riley also got the chicken pox shot so she'd be all caught up for school. Brave girl only shed one small tear. I had a waiver signed in Georgia saying she didn't need anymore shots but I don't have the energy to figure out how to get that done here so I just had the shot done. At least she's done until she's 5!

Tuesday, July 8, 2008

better late than never

Happy Fourth of July!


The day was pretty low-key. We are usually up in Wisconsin at this time but we're going up late this year. No parade for us this year, but we did go see the fireworks!

Thursday, July 3, 2008

chillin'


Riley and I just enjoyed a rare moment of sitting outside listening to music just the two of us for about an hour. Morgan is napping and Addy is supervising her Barbie dolls who are swimming in a sink.

so sweet

Morgan took Riley by the hand this morning and was walking her around the house - it was so cute! Of course this was after I told her no 4 times for pushing Riley, but still. She also loves to feed Riley bites of cereal or whatever she happens to be eating. I see a good little caretaker in our future!

Sunday, June 29, 2008

operation fatten up Riley

I think Riley's Papa called it that. :)

Anyway, it seems to be working! She was 24 pounds 2 months ago and now she's 25.5 pounds!

Our main change to her diet was just switching from skim milk to whole milk. And making sure she gets some sort of good fats during the day like peanut butter and cheese. Breakfast is still cereal but I usually give her shredded wheat instead of cheerios now because it has more calories.

Thursday, June 26, 2008

girly girl

I realized the way Riley holds her arms is perfect for carrying a purse!

Addy is pretending to be Snow White in case you're wondering what's up with the black wig. :)

Monday, June 23, 2008

new "faces"!

I see new people are checking out my blog. :) Now I need to update more often. My excuse this time is no internet access until a few days ago. Man, it's tough being disconnected for so long!

Riley is doing great! In fact her worst week was the week I tried that new sitter - I think it was too much sitting and not enough up and around for her.

For the last couple weeks she's had her Nana and Papa here which she LOVES. She's been walking great - maybe a few spills but nothing too rough. And despite the usual battle with consitpation this week she's been really happy.

I took her to a new therapy place last week that has this cool treehouse in it. They happened to be having summer camp going on while we were there and Riley loved walking around and watching all the other kids. I think I'm going to sign her up for a session in July - she loves being around other kids and it's really too hot here to get outside much during the day.

Anyway she had her first speech therapy session there today and did pretty well. Her favorite thing to do was swing though - we need to get our swingset back up! I also got some information on a place 2 hours away that has high tech assistive technology devices so we'll have to check that out. Tomorrow we go back for OT and then we'll probably combine the two sessions next week. We'll be heading up to Wisconsin soon and then school will start just as we get back but I wanted to get something started during the summer - even just to get out and "play".

A few pictures we took last night down by the lake:

Her eyes always looks so dark and pretty and this one captures that I think!

Not sure what Sadie was doing to her...
But apparently she liked it!
I just love pictures like these because they are so "Riley"
One last one by the water!