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.

Portrait Day

We went to take Mother's Day and Megan's 3-year old pictures today.

Swimming

We finally found an indoor, heated pool. They have recommended warm water swimming as part of Addison's therapy. She is so buoyant that you only have to support her head and the reast of her body floats. The best part is that she is also able to move her legs quite a bit. If I can ever figure out how to post my video, I can show you. Megan gets the added perk, also, of being able to swim with us. Although she doesn't have her floaties on in the picture, she wears them while I have Addie in the pool. It is fun and great for all of us!

Bible Class

Here are some pictures of Addie in Bible Class this week. She is in the exersaucer for her Sunday class in the baby room and then she sat in the big kids' table for Wednesday night. It looks like she is going to enjoy church as much as Megan does. (I'll try to get some updated pictures of Megan with her friends in class next week.)

Silver Dollar City

It was cold in the morning, but it turned into a beautiful day.



Megan's 1st roller coaster ride. How fun!

Megan and G-Ma on the elephants. How many 86-year old Grandmas do you know that get to have fun on amusement rides with their great-grandchildren? You could hear them both laughing.

Megan then got to ride some smaller rides all by herself.




We are now season pass holders of Silver Dollar City. If anyone is ever in the mood to go, then let us know and we will join you. SDC is in Branson, MO, and only about 30 miles from my Grandma's house on Table Rock Lake. We spent a few days up there last week. Here are some pictures of our fun:

Spring Pictures

Now what I really enjoy, sharing pictures:


Addie in her bumbo seat. How cute is that outfit that Audrey gave her?



April surprised Megan with Sesame Street Live tickets.


Our family on Baby Dedication Day at church.


Addie was trying to sit up in the chair.

Addie and Jake had matching outfits for Baby Dedication Day. Could they be any more serious?

Addison and Megan with their Great G-Ma Lulu (my dad's mom) on Easter.



Megan with her easter baskets. Yes, she received 3 (one from the Bunny; one from Grammy; and one from April.)

Hunting Easter Eggs at the neighborhood party.

It's been a long time..

Yes, it's been a long time since I've updated the blog. I'm not even sure where to begin. It has been a roller coaster for sure. After almost five months, Addison became free from her hip brace during the day in late February. The Doctor hoped that the freedom would increase her leg mobility thus strengthening her muscles. She still was required to wear it while sleeping, but this was such a relief for me in holding her, feeding her, and taking her places. It also allowed us to finally begin some physical therapy on her legs. After a few weeks, we saw some improvement in her overall strength. She began holding her head up better and tolerating her tummy time more. Her legs started showing some slight improvement. We were very encouraged at her development.

Then, we had to go to the MDA clinic for the Pediatric Neurologist appointment on 3/14. We had not seen her since Addison was six-weeks old. I did not want to go. I had watched Addison improve and had become comfortable in our baby at this point. I didn't want anyone to discourage me. All this said, I knew that we needed to take her. The appointment started off very well. Addie was happy, talking, and moving around. I wanted the doctor to see all of this that I was seeing at home. Then as the doctor was about to leave, she said that she wanted to perform some additional DNA testing on her because she just doesn't know that the diagnosis of Myotonic Dystrophy describes Addison's present conditions. She said that she was going to test her for SMA. "What is SMA?" I inquired. The doctor just left the room without answering my question. The Physical Therapist then came to visit with us about different ways to work with Addison and then they sent us to the lab to have blood drawn. The doctor never came back to see us. Lesson learned - we will never leave the office again without ALL of our questions and concerns being addressed no matter how the staff acts. When we got home, we researched SMA. TEARS, TEARS, ANGER AT THE DOCTOR, FRUSTRATION---I hit rock-bottom again. A very high percentage of infants diagnosed with SMA do not see their 2nd birthday. As I read about it, I kept wanting to find something that I could exclude Addison from the description. Unfortunately I wasn't able to find anything that would give me that peace of mind. The only thing that I knew was that Addison appeared to be improving and not growing weaker. The next morning, Phillip called the MDA clinic and voiced our feelings about the appointment and that we could not believe that they would leave us to find out this information on our own. The administrator apologized immensely and agreed that the doctor should not have handled the situation in that manner. She then told us that it would take about 3 days to obtain the results, which would be on the following Monday or Tuesday. I wanted to leave town to try to distract my mind, but Phillip's boss would not allow him off work on Friday. It seemed like everything was against me. We made it through the weekend and then I tried to keep myself totally busy on Monday and Tuesday and away from the house. I didn't want to receive the phone call of the results. The results didn't come. After 15 days, we finally received the results. IT WAS NORMAL! I seriously couldn't stop crying that day. All of that fear and anxiety for that two weeks could finally be released. We continue to thank God for sustaining us during this time and saving us from this disease! I felt like that I could press play again on my life and continue going forward and make plans for the future.

• I will share the only lesson that I could meditate on during this two-week period. I was angry with God. It had been 10-months since we initially found out that there were problems with Addison during my pregnancy and I couldn't understand why God continued to place these emotional valleys before us. Why are so many questions left unanswered regarding Addison's health and future? Anyway, I felt like my faith was VERY, very small. THANK GOD that I do have a strong foundation in Christ and can recall scriptures that will help me. I immediately recalled Jesus saying in Matthew 17:20, "Because you have so little faith. I tell you the truth, if you have faith as small as a mustard seed, you can say to this mountain, 'Move from here to there' and it will move. Nothing will be impossible for you." My faith felt as small as a mustard seed, so my prayer was for God to move this mountain. As I continue to pray for the daily specifics in Addison (increased strength, mobility of her legs, discernment for the physicians, patience and wisdom for our family), my primary prayer is for a complete miracle. I want to see the mountain move and that is what I will continue to pray for. As I transferred my anger for reading his words, my heart softened and I thanked God for giving me my faith.

After we could resume life, I began to gather Addison's medical records and we started making plans to see a highly regarded Pediatric Neuro in St. Louis and professor of neurology at Washington University that some very respected medical friends (Dr. Sarah Lacey-Pilarowski and Dr. Nupur Ghoshal) of mine had recommended to me. Nupur actually discussed Addison's case with Dr. Connolly back in November, but we were not ready to take her out of state at that point. We contacted Dr. Connolly's office and they said that we would need to send a letter explaining why we wanted Addison to be seen by them and a copy of all her medical work up to this point. They said that they would then contact us with an appointment in probably late May or June. After some heated conversations with the local neurologist, we obtained our records and faxed them to Dr. Connolly on Thursday, April 12th. Then on Monday, April 16th, I received a phone call while eating lunch with some friends that they would like to see Addison in four days on Thursday, April 19th. WOW! We were excited, but had to scramble to make travel arrangements on such short notice.

We had an outstanding appointment with Dr. Connolly at Barnes-Jewish Hospital (connected to St. Louis Children's) last Thursday. She and the resident spent almost two hours with us. She was the first physician to thoroughly examine Addison from head to toe. Phillip, Addison, and I all really connected with her. I do not have enough words to explain how outstanding that she was. It has been the appointment that we have wanted for six months. Dr. Connolly was able to position her in different ways and stimulate every muscle in her legs and observe some slight movement in each of them. This was very encouraging to us because we have not even known if Addison had all of her muscles in her legs up to this point. Then instead of telling us that we should just wait and see her in another six months and let her improve on her own, Dr. Connolly had a plan of action. She believes that there could be a problem with her nerves, so she scheduled a nerve conduction study in St. Louis in two months. We will be returning there on June 26th. We are encouraged that a doctor finally doesn't seem "puzzled" (as written in the last dictation from the local neuro) by Addison and is willing to walk with us down this road.

Our prayer requests remain the same: complete overall healing, correct formation of her hip joint, improved muscular strength, and kicking legs.