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.

Cousins

Here is a few pictures that Josh took of Jake and Addison on Monday night. Aren't they cute!

Go Sooners!

OK, so OU hasn't had that great of a basketball season this year. You cannot convince Megan that her "OU boys" are not the best. She has loved going to the majority of games with her Daddy, Papa, and Uncle Johnny. Apparently she has made it on the big screen at the games for all but one game. Phillip was thrilled when she said that she wants to be "OU Cheer Girl" when she gets bigger.



Megan enjoying the warm weather before the OU/A&M game.

Megan and Macy Boswell at the game. Megan always looks forward to Macy's visits from Texas. Macy's Dad is an A&M alum, so Megan is trying to teach her the Boomer Sooner cheers. Phillip said that it was hard to get a picture because they wouldn't stand still for more than a second. Megan's and Macy's grandmas (June and Jan) said that it certainly takes them back 30 years when they see the girls playing because they say that they look so much like Rae and I when we were that age. (Our families have been close friends for my entire life.)

Valentine's Day

Grandma Jeri brought over these V-Day shirts for the girls this week.



We got Phillip a heart-shaped pizza for our family Valentine's Dinner on Tuesday. Then on Wednesday, we were able to get away without the girls. Thanks Grammy and Poppie!

Hangin' Out

Here are a few cute pictures of Megan and Addison having some girl time in front of the mirror this week. It appears that Addison is going to be our more serious child. Don't you love Addie's rolls. She weighed 16.5 lbs at her 4-month checkup this week.

Welcome Jake!

Little Jake arrived healthy on Friday afternoon. Josh and Jen are so excited and happy to have him here. Addison and Jake are going to have lots of fun being only four months apart.

Baby Josie

To all my blog readers please join us in praying for our sweet friend from church. They lost their baby girl Josie yesterday afternoon without warning. Please see an excerpt of the article that I've pasted below.

Josie Kate born November 14, 2006, unexpectedly left this world to be with her Heavenly Father February 6, 2007.

Every moment of her precious life will be cherished forever.
Survived by her father and mother Toby & Sara and big sister, Ella Grace.

Megan and Addison

Last week, I spontaneously decided to take the girls to the mall for a picture. Addison had just had a really good nap and Megan was in a great mood, so I thought that all factors were working in my favor. However it appeared that my luck had changed when the photographer assigned to us was a younger guy with a black mustache and beard -- remember Megan doesn't like most men with facial hair :) After trying to pull her out from behind my legs, the guy went to get another girl to try to help position them. By then, Addison was started to fuss. I didn't think that the pictures would be good at all, but he actually shot several good ones. My scanner is going out on my printer, but you can get an idea of how the actual picture looks.

Tummy Time

We have really been working on getting Addie on her tummy the last few weeks. Her neck is getting stronger as you can see from these pics. Also, you can see that she has lost most of her hair and the new hair seems a lot lighter.

Progress Updates

As an answer to many prayers, Addison remained happy and calm for the first time at her orthopedic appointment on 1/10. She usually is hysterical and we have not felt like he could evaluate her thoroughly. After seeing her move her legs a little (we have never been able to show him this before), Addison's orthopedic doctor suggested that we begin to take her out of the hip brace for 1-2 hours a couple times per day. He hopes that by giving her some more freedom that she will try to move her legs more and strengthen the muscles in her lower extremeties. Please continue to pray hard that her legs and muscles will strengthen and that her hips will be healed without surgery.

Since then, we have been working really hard with Addison during her awake times to try to move her legs for her in ways that a normal newborn would. I have found that I can get her legs to move the best during her bathtime. It is amazing to watch her getting a tiny more movement every day.

This month, we also began our in-home therapy with Sooner Start, the state's early childhood development agency. Our occupational therapy has been to the house once. She will be visiting us on a weekly basis to evaluate Addison and teaching us how to help Addison stay on track developmentally. On her first visit, she noted that her head was becoming very flat on the right side. This also has affected her motor skills. I had noticed that her right arm was a lot stronger and more mobile, but didn't know why. The OT explained that they learn to move their limbs by being able to see them. Since Addison was primarily looking to the right, she didn't really know that her left arm and hand existed. We have learned ways now to motivate her to reach for her toys with the left arm and hand. She began to make improvements overnight. Regarding this situation, please pray that Addison's head will reshape through positioning and will not require medical intervention. We certainly do not want Addison to be in a helmet for her head and a brace for her hips.

Last week, I also received the results back from my DNA testing. Unfortunately, I tested positive. My numbers are extremely low, so hopefully I will never experience any of the symptoms. I have great peace about myself; however, I struggle with worrying whether Megan will be affected by the disease. Please pray that I will stop thinking about this so much and that I will trust God completely as he protects her precious body.

My last prayer request is also a praise. We have been cautioned repeatedly by Addison's doctors that a cold or virus could potentially be life-threatening to her due to the respiratory weakness that accompanies congenital Myotonic Dystrophy. As a result, we have tried to limit her time outside of the house and her interaction with many people. Thankfully Addison has remained healthy despite Phillip having two colds in the last month. We praise God for protecting her so far this winter. Please pray for her continued protection from any virus or infection during the next few critical months.

Addison's first tummy time after receiving authorization from Dr. last week. She lifted her head pretty good, but hasn't figured out that her arms could help her out a lot.

Addison loves her bath time. As you can see, she is very happy after her bath last night. Her tongue smile is the sure sign of her happiness. What a cutie!

Addison's First Day in Pants

Addison was fitted in a new hip brace right before Christmas. I really hated the brace at first because it is very difficult to hold her comfortably. It is molded fiberglass, lined with foam. It is not terribly uncomfortable for her, but it is very rigid on the outside for me. After almost a month, I am finally getting used to it. As I choose to look for the positive in every situation that we face, I am very happy that Addison could begin wearing some pants with this brace. The brace is worn over clothes, which allows us more clothing options.

Here is a picture of Addison wearing pants for the first time.

Christmas 2006

We had a wonderful Christmas with our family. Instead of providing you with lots of details, I'll include a few pictures of the girls.

Addison sticks her tongue out when she is really happy or trying to talk to us.

Megan on Christmas Day at Grammy and Poppie's House (Previously known as Papa, but Megan made up Poppie. For those of you who know my Dad's relationship with Megan, he would answer to anything that she called him.)

Megan peeking out of the Cinderella Castle tent, courtesy of Johnny and April. The castle takes up her entire play room. The box said that it would hold 17 (not a typo) children. Crazy! This was definitely the center of many laughs on Christmas. Supposedly they didn't realize it was going to be SOOO BIG.

Megan and Daddy --- Worn out after lots of fun!

Addison and Mommy