4 year check-up

Friday I took Autumn for her 4 year check-up.  She weighs 27.6 lbs & 34.5 inches tall.  I got a lecture from the doctor about doing things for Autumn that she can do herself.  Autumn was playing a Mickey Mouse game on the ipad & she grabbed my hand to point to an arrow to make it go to the next page.  One the next page she has to move ducks into a chest with her finger.  She does all 10 ducks by herself & then wants me to push the arrow when done.  The dr. observed this & then fussed me for helping her when she can do it by herself.  My nurse then tells the dr. how I do things all the time for her instead of making her do it.  Apparently I am being manipulated by my 4 year old & had not realized it.  I just have a hard time knowing if it's something she really does not understand or if it's something she is just being stubborn about & does not want to do herself.  So, I got a written note from the doctor saying, "MAKE HER WORK-SHE KNOWS HOW TO DO A LOT" & she even signed it so I can show daddy too who apparently has been manipulated as well.  So, the gig is now up Autumn & your days of being lazy are over! 

Autumn temp has been in the 99's ever since she got sick over a week ago.  I've been slightly worried maybe she was getting a UTI but thought maybe it was just from allergies or something.  The doctor said her left ear is draining so she ordered some drops...that takes care of that problem.  :)  I called the pharmacy to see if they were ready & she did not have our insurance listed yet so the drops were going to be $177...for ear drops! That is crazy!  Thankfully, after insurance it cost us nothing. 

Autumn ended up getting 4 immunizations & a flu shot.  She did not feel a thing until the last one in her right leg & it caused her left leg to fly straight up from the reaction.  She still did not cry but good to see she can feel some deep pain in her right thigh. :)

SB Clinic

Today we had Spina Bifida clinic which started at 9:45am & we were finally done about 1:00pm.

PT: Came in to check my concerns about Autumn's legs looking different lengths.  She said they are only centimeters off which can be normal so not to worry.  They checked Autumn's AFO's (leg braces) to see if they still fit well, which they do.  One of our foster dogs had chewed on one pair so they fixed it for us. :)

We then talked with the nurse practitioner about the following issues:

(Warning: Poop talk to skip ahead if you don't want details)
Bowel program: We discussed how to manage Autumn's bowels so she will only go to the bathroom once a day & eventually be able to wear underwear.  Right now she gets a medication (Senna) & an enema every other day or so to help her go.  Problem is this is not completely emptying her colon so she is going again in the morning as well.  In order for her to wear underwear we have to plan daily when she will go to the bathroom.  We have 2 options: First we are going to change from enemeez to the "magic bullet" which is a dispository tablet so see if this helps & we will increase her Senna dose.  If this does not work then we will start giving her a cone enema daily.  When doing a cone enema she will have to sit on the toilet for 15-60 minutes daily to clean out her colon.  Which brought up our next issue...

OT: Came in to talk about equipment for a toilet seat.  Autumn does not have the trunk control to sit on a toilet for a long period of time. So, we discussed options & decided to order her equipment that attaches to the toilet seat so she can have support.  It will have straps & hand bars to support her while I can administer the cone enema.  I was not sure if I should order the equipment yet or wait but I know this is our goal eventually so it would be best just to get it now.  This also brought us to my next concern...

Home modifications:  I have been stressed lately about our house & how the bathroom is not accessible for Autumn's needs.  We got her a bath seat but it's been nothing but frustration for us.  Our faucet is in the way for me to wash her without getting my shirt sleeve soaked & it can not attach a hand held shower type head to it.  It's a HUGE seat & it will not even fit in our shower & we have to bathe Autumn in our tub because the only other tub is upstairs.  Autumn also needs a modified bigger bed but her current room is so small it will not fit a bigger bed.  So, all I see in my head is dollar signs.  We also will need to get a wheelchair accessible van soon because the weight of transporting Autumn to & from the car is getting to be too hard on me.  So, after clinic we were sent to talk with someone about home modification options.  Depending on our income, we could possibly get help with modifications for Autumn a bathroom.  Problem is that Autumn needs her very own bathroom so house hunting or building may be in our near future as well.  We don't have the space to modify what we have in our current home. :( 

So, it was a lot to learn & think about at clinic today about Autumn's future needs.  In the morning she has her 4 year check up. :)

Autumn's 4th Birthday

We had an early birthday party for Autumn the weekend of the walk since the family was here. It was so stress free.  We just ordered pizza for the family, opened presents, & had some cake. 

Autumn does not like having food so close to her

Autumn LOVES to dance & every time I walk by she death grips my hand or shirt until I spin her around.

I think this was one of her favorite gifts.  She smiled so big as soon as she saw it.

Every single year my kids have had a birthday party.  I know this technically was a party but without a fun activity or friends, I don't really consider it a party.  I feel bad for not throwing her such a big party because this little girl has so much to celebrate about her life but I started thinking about Autumn & what she would want.  She hates crowds, she gets overwhelmed with too many people, she does not eat food, there are limited activities she can do, etc.  So, instead of putting her through a party that would be stressful for her I figured we would do the small family party & then take her to the aquarium since it's one of those rare places she enjoys.  The Wednesday before for actual birthday the kids had a half day at school.  So, about 1:30 just the 5 of us headed to Grapevine to take her the Sea Life Aquarium.  It was so nice because there were only a few other people there so Autumn was not overwhelmed.

Madison & Autumn...I'm so blessed with such beautiful girls

Autumn checking out the stingrays

Daddy & Autumn in the bubble to get a closer look

Autumn was more interested in the fish faces that sissy kept making than the fish at times

After the aquarium we stopped in Coppell on the way home to eat Rosa's Cafe.  It's a food place that we LOVE in Midland/Odessa where I grew up & miss greatly.  The closest one in DFW to us is Coppell which is about a 40 minute drive.  As I sat in the restaurant with my family of 5, I realized this is the first time that we have been out to eat together with just us 5.  We only take Autumn to eat out when there is a birthday party for a family member & we have more help with Autumn.  It was nice to have that moment but I remembered why we don't do it.  Autumn was starting to get sick so she was desatting & needed suctioning constantly.  Daddy had pulled up Super Why on his phone for her to watch (or she would cry) so we were constantly having her grab & reach for the phone then it would mess up her show.  We could not hold a conversation.  My food had gotten cold & Mexican food is always best hot.  Good thing was that no one else was sitting in the area where we sat so we could suction & not have to excuse ourselves to the bathroom every time.  I personally think it's inconsiderate to suction Autumn when others are around us trying to eat.  It's not the most appealing sound or sight at times. We do it if the place is loud & can not be heard or if it's an emergency but otherwise we try to make bathroom trips to suction & not disturb others when food is around. :)  It was so nice to get out together as a family & do something fun since it's rare for all 5 of us to go somewhere together without more help for Autumn.  By the time we got home Autumn was running a fever & was sick for the next 5 days.  Allergy season is suppose to be a bad one this year & we are already feeling it here in our house.  :( 

I can not believe my baby girl is 4 years old.  I teased James that she's 4 going on 12 months again.  Her body keeps growing but her development remains behind.  She is improving but it's at an extremely slow rate but I've learned that's how Autumn does it & as long as we see progress then I know her little brain is still healing.  I do get discouraged at times but to look back at all she has been through in 4 years reminds me that we are SO blessed that she is even still with us today.  I prepared a 4 year old slideshow of Autumn's life for her 4th birthday.  You can see if here: http://www.youtube.com/watch?v=GzesXlJELuI&feature=plcp 
For some reason the pictures became blurry when I put it on you tube but you can still see what an amazing child God blessed our family with.

Spina Bifida Walk-N-Roll 2012

On September 8th we did our first ever walk-n-roll for spina bifida at Burger's Lake in Fort Worth, Texas.  We had a blast!  Our team name was Autumn's Army & family joined us in walking.  I had family, friends, & James' co-workers donate money.  Our goal was to raise $500 for the Spina Bifida Association but we ended up raising $2,060.  I want to say a HUGE thank you to everyone that donated and/or joined us in walking that day.  It touched my heart to see so many people care for a cause that is so close to our hearts.  Thank you, thank you, thank you!!! 

The day was perfect.  It began with a 1/2 mile walk around the lake & then we spent the rest of the morning just spending time together, having lunch, & playing in the water. 

Playing pat-a-cake while waiting for the walk to start

Autumn & her cousin, Garrett

Walk begins!

Had to take turns holding Autumn's hands or she would stop her chair & not go.

Finish line

Autumn & her friend, Hayden

My SIL had her friend make some cute & yummy cookies for our team.

Autumn trying to figure out if she likes the water or not

Beach at Burger's Lake

Kids slide & diving board

Big diving board

Slides

Bar swing into the water

Testing out the cold water

Sissy took her to the warmer water

Sweet sister love

Playing in the water with Papa

Autumn's Army

After the walk, we went home to rest & then later had an early birthday celebration for Autumn while all the family was in town.  Autumn was SO good at the walk so it made it such a blessed & stress-free day!  I'm really excited about the walk next year & hopefully more people will join us!