Day 1

Today was day 1 of Cole's new ADHD patch, daytrana. I had to convince him that it was a "special bandaid". He shed a few tears at first but quickly forgot it was on. It is worn daily for 9 hours and then you take it off. I am hoping that this is what he needs to finally get potty training. A little medicine to focus and increase his impulse control. Keep your fingers crossed! I dont know how much more I can take!

Sleep!

My sweet baby girl has become quite the early riser. I can set a clock to it. Exactly 5:45 every morning. She starts kicking her feet and blowing raspberries. I have tried everything to adjust her internal clock. Later nap, later bedtime, earlier bedtime, 1 nap, 2 naps. You name it, I've tried it!

I am tired---At least she has a T.V. in her room. I make her lay there until 6:15 and then I will turn on a movie. It gets me a couple more minutes of rest.

If anyone has any suggestions, please leave a comment!

Vacation!

2 weeks from today Avery and I are headed north!
We are flying to Indiana to meet Kelly and Brooklyn. I am sooo excited! I cant wait to get my arms around them both. Cole, mom and dad are driving up a couple of days later to meet us in Indy for a day with the Butler crew! Then we are going to Illinois to see family. Thad isn't going to make the trip, someone has to make some money!

Pool pics

We decided to get us a good ole' redneck above ground pool(said in your best southern voice). The kids love it. It is just big enough to swim but not deep enough for Cole to drown. It is chest deep on him. Avery loves it too. She gets so relaxed in her float that she will just about fall asleep. She is completely still. No clapping, raspberries, or hand mouthing. It is really nice. We try to get in everyday.

Avery Update

Thought I would give all my blog readers a general update on Avery. She is doing pretty well overall. She seems to have plateaued as far as gross motor function. Her walking has stabilized a considerable amount. She actually hasn't had to wear her helmet in over 3 weeks. She still looks like a weeble-wobble most of the time, but she isnt falling nearly as much. Her hand function is not improving.
We are at a crossroads with early intervention. The program took a huge fiscal hit with their budget being reduced. With the exception of physical therapy, we arent seeing much out of her therapy sessions. They are reducing her services to 1 time a month for ST, OT, and with her DT. She will continue to receive PT 3 times a month.
She has started having what we are fairly sure are seizures. The first episode was 30 minutes of shaking, much like when you get a chill down your spine. She was grunting and very agitated. The next 2 episodes were much more consistent. She was walking, her knees buckled, head tilted back and her eyes rolled back in her head. Each episode lasted 3-4 seconds. I am having a hard time deciding whether or not to start medicine. I feel like if I start now, she will never come off of it ever. Dr. Suhrbier, her neurologist, has left the decision up to me. Clinically she has enough of an abnormal EEG to warrant meds but he also isn't quick to prescribe them. I am taking a wait and see approach. If the episodes continue than I will go ahead. If this was an isolated incident I will wait it out.
We went to the gastroenterologist yesterday. Avery is the polar opposite of most Rett girls. She has NEVER had a single episode of constipation. In fact I call her my "super-dooper pooper". I have been concerned for about 5 months now. They ordered a slew of tests but Dr. Sacks feels that she has what is called "toddler's diarrhea". It is a benign process that she will outgrow some where around 5 years old. I guess in the big scheme of things I would much rather her be this way than miserable with constipation.

(sorry, no pictures today! I will post some new ones later)

OT with Alisa

Today was OT with Ms. Alisa. She is so sweet and cute! :) We went outside and did finger painting and played with shaving cream. Avery was very receptive to it and didn't fight hand over hand play. She and Julia both needed a bath afterwards...

Ramblings of a sad mom

Over the past week I have had several things happen that have my head spinning. The first was over dinner at my moms. Everyone sat down to eat. It hit me hard. I will have to feed this sweet baby EVERY meal for the rest of her life. Her hand function has decreased to the point that she cant do it at all.

The second thing was at the park. Avery's cousin Jules tagged along and played like any other child would. But my baby cant. She had 3 people cheering her on to do a simple task, raise her foot to climb a step. CLIMB A STEP! The simplest tasks are almost unobtainable for Avery. Things that come so naturally, automatic for us will never be that for her. She many improve some. She may not. My baby will struggle to do everything in life. It is just so not fair.

Then there is Cole. My 5 year old, high spirited child. We are struggling with potty training. He will go potty if we make him, but not on his own. Can you even fathom how many diapers I have changed it a matter of 5 years?!?!? The harder we push him to train, the more he resists. He has even reverted to an old, disgusting habit of playing with his poo. I have lost my cool several times this week with him. I have tried everything. Nothing is working. My kid is going to be in diapers for ever. Or rather my KIDS are going to be in diapers for ever!!

Therapy

Today, Avery had PT and OT at the park. It was hot but Aves worked very hard.

We worked on climbing steps. Avery has never climbed a step under her own power but tried hard today.

We also worked on walking on the balance beam.

Her favorite part was after therapy when she could swing!

Cousin Julia tagged along.

Joys of parenthood!

This is what I walked into my bathroom to find. Yes, that is baking soda. Yes, it was an entire, HUGE box. Cole and boredom are a deadly duo! After this fiasco, he got in trouble 2 more times for making messes----Is it too early to begin the countdown to school starting?!?!?

snuggle

Just a few sweet pictures of Avery and daddy, her favorite person ever!

Pop go the Wiggles!

I ordered our tickets for the wiggles this morning. 2nd row from the stage! Thad's cousin and his family are going with us.
This is hopefully going to be the incentive to get Cole to potty train. We told Cole that the Wiggles don't let 5 year old little boys who aren't potty trained go to their concert. We will see how it turns out!

wannabe star

Uncle Meador (daddy's brother) has dropped hints that he wants to be "famous", by famous he means on my blog! Here you go Uncle Meador, your 15 minutes of fame! :)

Stylin'

Aunt Erin came by yesterday and
brought birthday goodies. She got Aves 2 new movies and a pair of big girl sunglasses!
I think this picture says "I'm cool!".
(Aunt Erin if you read this, we can't wait for you to have your baby, a new playmate for me!)

Yeah.

Avery had speech therapy this morning. We are trying to introduce the yes/no cards (thanks Kelly!). Julene asked her if she wanted to look at a book. She held up the cards and before she could say anything else Avery blurted out "yeah"! Totally in context and totally on cue...It was hilarious and Avery seemed as shocked as we were! Not another sound since, well other than her constant raspberries!

Eyes of an angel...

The Eyes of an Angel
From the Angel's mouth,
No words are heard.
Yet all those around her
Know just what she says.
From the Angel's eyes,
We hear her story.
Through her eyes we learn
Her every want and desire.
Look into the Angel's eyes,
And a story you will be told...
A wordless story full of joy...
The story of a Rett Angel.

Borrowed this off another blog...(hope you don't mind Rebecca)

More party pics!

Avery's party

Well another birthday has come and gone! We had a great day. Avery was a bit overwhelmed though. In fact she slept through most of the party! She got some new DVD's and a TV for her room. She loved the cake, ate 2 pieces. My mom and I made her cake and we think it turned out very cute! She was glad when the gang left so she could watch a movie in her room with her daddy!