Play Stop

Megan and Addie enjoyed a few hours at Play Stop a few weeks ago.

Back to Missouri

This trip to Missouri was when the cool front hit a few weeks ago, so we skipped the lake and went to a drive-through zoo and to the Dixie Stampede in Branson. The Dixie Stampede is excellent. All of us really enjoyed it - it even kept Addie's attention the whole time. Megan's favorite horse was Maverick, of course, because he shares the same name as her little buddy.

Loving the Slides

One of Megan's favorite places to go lately is Pump It Up. They have preschool playtime on Wed and Fri mornings. We have gone a few times recently. Her favorite thing is the big slide. There was a smaller, water version of the slide at our neighborhood Labor Day party.




Megan sliding


Megan & Macy hiding in the obstacle course

Megan at the Pool Party

Trips to St. Louis Children's Hospital

We had two trips to St. Louis this summer to see Addison's doctor. It was determined from the nerve conduction studies that Addison has a nerve disorder (primarily affecting her legs and feet) in addition and apart from her diagnosis of Myotonic Muscular Dystrophy. She is very rarely seen in infants, so once again they cannot give us any type of prognosis. Therefore, THE SKY IS THE LIMIT! Once again, we are left knowing that only God knows Addison's full potential and we will work like crazy getting her stronger and pray like crazy that she will be able to stand and walk someday. On her 2nd appointment, Dr. Connolly prescribed for us to purchase a pediatric stander for Addie after conferencing with Addie's orthopedic regarding her displaced hip. Yes - her right hip is still displaced and will eventually require surgical correction when and if we determine if she will ever be able to stand and walk. There is no reason to undergo the surgery and months in a body cast if she will never walk. It is a major operation. The good thing is that the displaced hip doesn't cause her any pain. Both doctors agreed that this is the next critical phase of her rehab to determine if she will be able to bear weight on her legs and strengthen her muscles enough to stand and then learn to walk. We met with Addie's therapist and medical equipment representatives and found ONE pediatric stander that will fit her small size and serve all of her needs. (Most kids are not placed in a stander until they are toddler/preschool age.) Now we are trying to obtain authorization from the insurance company to purchase it. Of course, they are listed as an exclusion in the policy; therefore, we have to appeal and prove the medical necessity for it. In the interim, we were able to obtain a loaner that will serve the purpose of weight-bearing until we can purchase one. The loaner is pretty cute relatively speaking. It doesn't provide everything that she needs, but it is better than nothing. The actual one that we will buy is NOT friendly to the eyes, but I will have to get over that. "The point is to get her standing, Julie." I continue to tell myself.

Well, here are some pics of the wonderful facilities at St. Louis.

St. Louis Children's Hospital

Inside atrium of Children's.

On the far left is the hotel where we stay, which is connected with skyways to the hospital. The rounded building on the right is where we go for appointments with Addison's doctors. Skyways attach all of the medical complex (Wash Univ Medical School, Barnes-Jewish Hospital, Children's, Medical Offices, Hotels.....) It is huge, but easy to navigate and very nice facilities.

BEHIND THE SCENES WITH ADDIE:

Addie's hip brace that she still wear all night.

Addie reading books while in her stander.

When you see us out and about, you think that all looks normal. However behind the scenes we have a lot of work to do to try to get our sweet angel better.

Cousins

Here are a few cute pictures of Megan and Addie with Jake.

More pics

Addie is learning how to sit up a little straighter; however, it is still for VERY short periods. However, let's remember back to us wondering if this day would ever actually happen. God is good!


"The Children of ACU"
Mallory (Amy's); Olivia (Lisa's); Brandon (Brooke's); Abby (Amy's); Addie; Ty (Lisa's) is up top;
Kylee (Holly's); Megan; Hunter and Julia (Brooke's)

Now just for the bigger kiddos.

Have these kids been photographed too often? We were sitting outside talking when our kids posed themselves. Of course, we all ran for our cameras when they caught our attention. They had so much fun playing together.

July Happenings

Another month has come and gone - we have had such a fun and laid-back schedule this summer. I know many of you mothers out there would gasp at our 3-year staying up until 10 or 11 and sleeping until 9:00, but most days it works out great for us.
We started off the month by spending an entire week at the lake with our family for the 4th of July. Sitting in the boat and watching the fireworks reflect off the water on the 4th of July is one of my favorite holiday happenings of the entire year. Megan and Addison both also enjoyed them. Thankfully neither of them seem to be bothered by the booms. However Megan's favorite thing to do this year was the colored smoke bombs. I'll post a picture of her below. Fireworks are legal at the lake, so the entire week it sounds like you are living in a warzone once the sun begins to set.
In July, we also spent many hours swimming at my parent's pool since the rain finally stopped and the water heated up. In mid-July, we went to the little Edmond rodeo with Josh, Jen, and Jake. Megan loved watching the horses, but didn't like the rodeo clowns at all. To end the month, we went and stayed at Brooke's house in Southlake, Texas, for several days. We were even able to meet up with my two college roommates who live in the DFW area by spending a day at Amy's house. We had so much fun catching up and letting all of our kids play and get to know each other.



ON THE BOAT BEFORE FIREWORKS

SWIMMIN' IN THE LAKE



Uncle Johnny and Megan with the "smoke" bombs. (She really pronounced the 'k', which cracked us up.)


Grammy, G-Ma, Jake, Megan, and Addie at the Catfish Cabin.



Addie's first bike ride in the trailer.



Megan at the rodeo



Just looking cute after a bath.

See her roll!

New milestones for Addie

Last week, Addison started rolling over from her stomach to her back. She thinks it is so funny when she plops over and escapes from the dreaded tummy-time. We are also able to get her to sit alone for a few seconds at a time. Her arms are still so weak that they give out pretty quickly.

Pray for us on Tuesday morning at 8:00 AM. We are going to St. Louis Children's Hospital for Addison to undergo the sedated nerve conduction study and the EMG. These tests are being performed to try to further diagnose the limited mobilty of her legs and possibly pinpoint a disconnect between the nerves in her legs and spine. The procedure will take approximately 1.5-2 hours. We are most concerned about her being sedated. Pray that her respiratory muscles stay strong during this procedure. If all goes well, we will return home that evening.

More Firsts

In the last few months, Megan has had lots of firsts. She had her first haircut a few weeks after her 3rd Birthday. Miss Lori was cutting Renee's and Maverick's hair at their house on a Saturday morning, so we joined in on the fun. Megan also learned how to ride her tricycle a few months ago and recently rode it all the way to my cousin Anneka's house, which is probably close to 1/2 mile total. She said her legs hurt the next day.

Megan's 1st Tubing Adventure

Two weeks ago, Megan had fun on her first tube ride. Phillip was going to ride with her. As he contemplated how to get in the tube with her, Megan said that she wanted to do it by herself. As you can see in the video, we started off really slow and calm. We ended up speeding up and she didn't want to stop. Hopefully she will love the lake as much as her Mommy does.

Messy Eaters

Addison (8 months old) is still struggling with eating baby foods. It is a complete mess and requires a bath after each feeding. Here is a picture of her enjoying her dinner of prunes and cereal. However, it doesn't look like it is going to get any better when she starts eating table food from looking at Fallon (13 months) eating ketchup.

Fun with Friends

We have had lots of fun with our friends this summer even though the rain has kept us indoors a lot. Here is some fun at the McDonald's. Renee felt like she was missing out on the fun, so she climbed to the top of the playground. No really - she had to rescue Maverick, who had climbed up and didn't want to come back down. (note: we decided that it was probably best to avoid this McD's by the OKC zoo until school is back in session. Both of Megan's friends (boys) ended up in tears after a bully kid shoved them to the ground.)

Megan's 3rd Birthday

A few of Megan's friends (and a lot of the family) met us at the zoo for her BD party. After having cookies and opening presents, they took a ride on the train before we walked around for awhile.

Sunday, May 20th, was Megan's actual birthday. Alll of the extended family came over to my parent's house for a hamburger cookout after church.


Megan and Addison chilling around the pool before lunch.

Megan's is making her wishes. My cake looked good until I tried to cut pieces. (FYI - fruit tape is a good decoration, but doesn't slice well.) It was pretty funny!


Megan received a guitar and keyboard from Phillip and I for her BD. She is our little entertainer at home.

May Pictures

Megan's school program (she is the 2nd from right). You can view her prize-winning performance at Audrey's 5/11 blog http://maucktalk.blogspot.com/(mom of Carson, who is to the right of Megan). To those that don't want to watch the video, Megan decided to suck her fingers the majority of the time instead of singing. She truly has two personalities (home vs. away).
Grammy and Megan


In the top left corner is my G-Ma (have I told you that she is 86?) with my Mom and Megan just to the right. They were enjoying the swings at Silver Dollar City. We took a girls' trip on Mother's Day up to stay with G-Ma for a few days.

Addison's first boat ride. G-Ma; April; Addie; Megan; and Mom

Megan posing on the stairs at G-ma's lake house.




Megan and friends at church on Mother's Day. She decided to act silly for the camera and pose with a green feather in her mouth instead of gluing it to the page like the other kids.