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.