The Diagnosis

On Monday, November 6th, we finally received the results from Addison's DNA testing after a month of waiting. She had tested positive for Myotonic Muscular Dystrophy. I was crushed! After observations from the doctors, they had not expected this diagnosis since it did not appear that her upper body was affected. Therefore this still hit us as a surprise. The next two days, I went from having a positive attitude in the situation to really struggling with my trust in why God has allowed this to happen to my family. After shedding several tears and voicing honest prayers to God, my faith and trust reemerged and I was ready to forge ahead down this unknown path. Phillip and I both felt some relief after the Doctor's Appointment on Wednesday. She said that Addison's DNA repeat numbers were very low, which usually is correllated with a milder form of the disease. The Doctor felt confident that this disease was an explanation for Addison's conditions, including the lack of leg movement. However she did state that she has never really seen this type of presentation. She explained that children with myotonic muscular dystrophy will continue improving and growing stronger for the majority of childhood and then will begin to develop symptoms of the adult-version later in life. She cautioned us to be very aware of any respiratory infection and congestion throughout the winter because Addison would be at risk of developing very severe respiratory problems as a result.

After talking to the Doctor and searching relentlessly for information regarding Congenital Myotonic Dystrophy, Phillip and I still were not satisfied and comfortable that this is the root or only cause of Addison's problems. It doesn't make sense that she would have such severe limitation of only her legs with such low DNA numbers; therefore, we decided that we would still seek an additional observation of her from the Ped Neuro group in Ft. Worth on Wednesday, November 22nd. We are just hoping that someone out there has seen a patient similiar to Addison and will have more input regarding her treatment plan. Our schedule continues to stay packed with appointments: 11/21 - orthopedic; 11/22 - ped neuro in Ft. Worth; and 11/29 - ultrasound hip scan at Children's Hospital. PLEASE PRAY FOR OUR WISDOM IN COMPREHENDING ALL OF THE INFORMATION BEING THROWN OUR WAY AND THAT WE WILL BE ABLE TO COMMUNICATE OUR QUESTIONS CLEARLY TO OUR DOCTORS. WE ALSO PRAY FOR ALL OF THE PHYSICIANS' WISDOM AS THEY CARE FOR ADDISON. ALSO, PRAY THAT ADDISON WILL BE CONTENT AND COMFORTABLE INSTEAD OF CRYING AT HER APPOINTMENTS, SO THE DOCTORS CAN EVALUATE HER BETTER.

It is easy to get caught up in the medical and diagnostic world of Addison; however, she reminded us in the last few weeks amidst the pain that she is our sweet baby girl. She began smiling and cooing at us during her happy awake times (sometimes few and far between). She enjoys swinging and going on stroller rides with Grammy and Megan to the park while I take a quick nap or get some work done at home. She even went to the zoo for the first time this last Friday afternoon. Megan loves to hug her and even calls her "cute" and a "sweetheart" when she is crying after she asks her "What's matter, Addison Hope?"

AS MY TIME TO MAKE BLOG UPDATES GETS HARDER , JUST CONTINUE TO PRAY THE SAME THINGS LISTED ON PREVIOUS POSTS; ESPECIALLY COMPLETE HEALING OF HER HIPS AND LEGS. ALSO, WE GIVE PRAISE TO GOD FOR ALL OF THE IMPROVEMENTS THAT WE HAVE ALREADY SEEN IN HER SHORT LIFE.

Neurologist Visit #1

The OKC Pediatric Neurologist office called Tuesday afternoon to advise us that they had a cancellation and wanted us to bring Addison in today instead of waiting for next week. We took her this morning. Addison cried the majority of the time - poor thing - due to it being naptime and then brunch time for her. Despite this, the Doctor was able to perform an evaluation on Addison. She also evaluated Phillip and I for subtle signs of muscular problems (we both passed without any problem.) We still didn't receive any definitive diagnosis; however, the Doctor was very encouraging. She said that Addison's upper body was very strong with good muscle tone and that her cognitive skills appear normal. The Doctor ordered us to have another test (CPK) done, so we had to take Addison to Children's Hospital for a blood sample. It is to test the muscle enzyme level to help identify a range of muscle diseases, including muscular dystrophy. The Doctor said that this is just one more step to rule out some of these other conditions. All in all, the Doctor wants to take a "Wait and See" approach if this test comes back negative. She believes that Addison is already making progress by observing her upper body strength and the fact that she has begun to have slight movement in her legs and feet. We are not scheduled to go back and see her until February unless the blood tests identify a problem area that needs more immediate care.
For now, we are still planning on seeking the second observation/opinion with a Pediatric Neurologist at Cook's Children's Hospital in Ft. Worth in late November.
PLEASE CONTINUE TO PRAY FOR COMPLETE HEALING FOR ADDISON (LEGS,HIPS,MOVEMENT). ALSO, WE CONTINUE TO PRAY FOR ALL OF THE DOCTORS TREATING HER THAT THEY WILL BE ABLE TO CLEARLY DIAGNOSE ANY UNDERLYING CONDITIONS.

Trick or Treat

Megan was a little Dumbo for Halloween. She was really cute. Addison didn't dress up, but was showing off her growing strength for her Papa and Grammy. You can see her pushing up and looking all around in the picture below. We are so happy to see her progress daily. KEEP PRAYING FOR THOSE LEGS!

Out and About

After last week's appointment at the Pediatric Orthopedic, we received the approval to allow Addison to ride in the normal infant carrier car seat. WE NOW HAVE SOME FREEDOM! Therefore, we made the most of it this weekend. On Friday night, we took her out to eat Mexican Food for the first time. On Saturday, we went to a Pumpkin Patch Farm. On Sunday, she went to church for the first time. She did great and fell asleep in the car every time.

Addison was all dressed up for her First Sunday at Church.

Three Weeks Old

Addison Hope wearing her big flower headband (courtesy of 'Aunt' Brooke)


10/25/06: 3 weeks old today – Sorry for the delay in updating the next chapter of our journey with Addison Hope. As you can tell, it has been harder to find the time to sit at the computer since we brought our little girl home from the hospital. Can you believe that this journey only started three weeks ago, it seems like it has been months?

Addison is making progress already. Since we brought her home 12 days ago, we have already had 3 doctor appointments – all of which have been positive. As of yesterday, the pediatric orthopedic, Dr. Herndon, showed us x-rays that both of her femur fractures are healing well. I can tell through the daily handling and diapering that they are causing her less pain everyday. We will just have to wait to see if the Pavlik harness(brace) will also heal her displaced hip and her little feet. She will have to wear the harness for approximately 10 more weeks before they can determine the next step. WE ARE PRAYING THAT THE HARNESS WILL HEAL HER HIPS AND THAT SHE WILL NOT REQUIRE FURTHER SURGERY, which would require a hard full-body cast for several months.

Our exciting answer to prayer was seen on Sunday morning when we saw movement in her left leg for the first time. I was stroking her foot to show my brother how she would move her toes and Addison decided to show us that she could move her leg ever so slightly. It was a very subtle movement of pulling her knee in, but it showed us that there is some movement there. Then Dr. Herndon actually got her to move both legs a little when he was stroking them during his weekly examination. He hopes that we will continue to see improvement as her fractures continue to heal. PLEASE PRAY THAT ADDISON’S LEGS CONTINUE TO HEAL AND MOVE!!!!

For now, we remain in the waiting period for any additional diagnosis. We have her first neurologist appointment scheduled for 11/8/06 (two more weeks away.) WE CONTINUE TO PRAY THAT THE DOCTORS WILL BE ABLE TO CLEARLY DIAGNOSE ADDISON’S UNDERLYING CONDITION AND DETERMINE A DEFINITIVE PLAN OF TREATMENT.

To close, thank you for everyone that continues to pray for our family. Thank you to all of the sweet families at church who continue to bring us meals to enjoy. Most of all, thanks and praises to God who continues to heal our baby girl!

I'll close by sharing some pictures with you.

Megan is giving her little sissy some kisses and love.

First Bath at Home (Yes it took me an entire week to build up enough courage to do it. She can only be sponge-bathed for the entire 12-weeks that she is in the harness.)

First Full Day Home - Saturday

Addison enjoying a few awake minutes in her big crib. My Aunt Susie made her these cute pillows with her initials. (Look closely and you can read the A, H, M.)

We did great today. My parents came over to help me today, so Phillip could go to the OU football game for a few hours. Addison ate and slept like a perfect angel all day. The feeding and diapering times are the most stressful times because her fractured legs still cause her much pain when she is moved around.

PLEASE CONTINUE TO PRAY FOR ADDISON'S HEALING OF HER LEGS AND RELIEF FROM THE PAIN AND A CLEAR DIAGNOSIS ONCE WE BEGIN TO SEE THE SPECIALISTS.

Discharge Day - 10/13/06

Addison Hope Mesa - 9 Days Old

Going Home in the same outfit that her Mommy wore home from Baptist Hospital many years before.


I arrived to the Baptist NICU early on Friday in hopes that I would get to meet the orthopedic doctor on his morning rounds; however, he had already been by at around 5:30 am (that is way too early for me.) The nurses began reviewing some of the "going home" information and told me that they were planning on discharging us on Saturday afternoon. After I performed the 9:00 am feeding and diaper change, I headed home to eat lunch and pickup Phillip for the 1:00 pm feeding (yes - I was able to drive myself after waiting the one-week period after my c-section discharge). The nurse told me to bring my car seat back with me, so we could see if Addison would fit in it with her leg braces. Only about 15 minutes after I arrived home, Addison's nurse called me and said that there had been a change of plans and the Doctor had decided to discharge Addison this afternoon. We had to be back at the hospital in an hour to complete the "rooming in" procedures. This is where they have the parents and the baby stay in a hospital room and perform all of the caregiving for at least two feeding periods. This supposedly gives the parents added confidence with the nurses available if needed.

Regarding Addison's medical instructions, the NICU doctor finally was able to speak to the pediatric neurologist that specializes in neuromuscular disorders and she agreed to see Addison. However she wants to wait until Addison is at least a month old before she sees her and performs any further diagnostic tests on her. This was an answer to prayer as this doctor only practices Part-Time now since she also is a professor at OU Medical School among other things. Also, I had really prayed that Addison wouldn't need the muscle biopsy performed until she was stronger as I feared that she would need the respirator again if put under anesthesia.

Phillip and I scurried around to gather up our belongings and prep the house a little bit for bringing Addison home. We arrived back at the hospital at 1:00 pm. We performed our "rooming in" procedures and reviewed all of the discharge instructions with the doctor and nurses and left the hospital around 6:00 pm. (In the mean time, we determined that Addison could not ride in our car seat and the nurses found a special car seat that is available on loan from Children's Hospital. My sweet sister-in-law went to pick it up for us and bring it to the hospital.) What a whirlwind!

We were welcomed home with a big banner in our front yard (thanks to Melanie Lee - our Children's Minister at church). Megan was so excited when we got home and wanted to hold her "Baby Sissy." We explained to her that she could later when Addison was bigger and stronger, so she was satisfied by patting and kissing her hand and head.

After all of the excitement, we finally sat down to eat our dinner (provided by Julie Crum at church) around 8:00 pm. It tasted so good! Can you tell that Megan enjoyed the chocolate chip cookies?

Friday Night - She's Home

I will write the details and post pictures tomorrow as I need to get to bed, but I wanted to let everyone know that we brought Addison Hope home tonight. I'll share a few lines from some of the praise songs that have been echoing through my head this weak.

"Great our you God and Worthy of Glory;
Great are you God and Worthy of Praise."

"God will make a way when there seems to be no way. He works in ways we cannot see - He will make a way for me. He will be my guide. Hold closely to his side. He will make a way - God will make a way."

Please continue to pray for Addison's healing for her legs and a diagnosis on her condition once we begin to see the neuromuscular specialist.

One Week Old

10/11/06 – Addison celebrates her week old birthday with a new bed, eating from bottles and being held by mom.

Today turned out to be a very good day for Addison and her family. When we arrived this morning we were caught off guard when Addison’s big bed equipped with heaters and lights was not in her room, but we were quickly relieved when we saw her resting comfortably in a little wooden cradle. WHAT A BLESSING TO SEE HER SO PEACEFUL IN A REGULAR BED. Julie and I just kept staring at her and saying how sweet she looks under her blankets.

The nurses had fed Addison before we arrived at the hospital, but when we heard they were able to hold her and feed her a bottle we were again thrilled and thankful of her progress. She is much more comfortable in her new brace and is resting very well. We were so excited that we stayed by her side until her next feeding 3 ½ hours later. This time, Julie was able to hold Addison for the first time since arriving one week earlier and feed her a bottle. They both did wonderful. Addison ate twice as much as the day before and took to the bottle without any problems. Each feeding today, they were able to increase the amount of breastmilk and Addison was eager to take each additional amount without any problems. TODAY WAS TRULY AN ANSWER TO MANY PRAYERS.

The neonatologist was able to contact a specialist in the Dallas area. Based on the description, he thinks it could be neuromuscular. A local neurosurgeon and radiologist looked at Addison’s MRI in addition to the specialists from Monday night, and they too found no abnormalities. Like the Dallas doctor, they think it could be neuromuscular and are ordering an ultrasound tomorrow of her lower spine and pelvic area. WE PRAY FOR CONTINUED WISDOM FOR THE DOCTORS AND NURSES CARING FOR ADDISON, AND WE PRAY FOR WISDOM AND DISCERNMENT IN THE DESCISIONS THAT JULIE AND I WILL BE MAKING IN THE NEXT FEW DAYS. AND AS ALWAYS, WE ARE PRAYING FOR THE HEALING AND COMFORT OF ADDISON.

10/10/06 - Tuesday

I am including some pictures from Monday, so you can see what her egg crate position looked like for this last week before her brace was placed on her. We'll try to get some pictures of her in the brace tomorrow.

Today's major accomplishment was that Addison was placed in her brace this morning before we arrived at 10:00 to see her. Hopefully this will allow her legs to begin healing and her comfort level to improve. She slept peacefully and soundly the entire morning. She has improved from he jaundice, so the lights have been turned off and she can sleep without her little glasses. She looked so sweet when we arrived with her little eyes closed and covered up with her blankets on her side- like a newborn should look. Previously she had to stay on her back the entire time, but with the brace that can position her on the side.

We also were able to talk to both the neonatologist and our pediatrician about consulting and referring us to a pediatric neurologist out of state. Both were very supportive and open to the request. However we probably will not be able to obtain an appointment or consultation until Addison is discharged from NICU and able to travel to an appointment.

For now, continue praying for Addison's fractured legs to heal quickly to alleviate her pain, that her breathing will remain strong, and that she will continue to improve with her food digestion. Once they feel that she is digesting all of her food, then they can try to begin bottle feeding again instead of the feeding tube.


Thanks for everyone's sweet comments and encouragement.

Some Answers, More Questions

On Monday 10/9, Julie and I went to see Addison at her 10:00 a.m. feeding. Megan went to the Zoo with her good friend Graeme and his parents Jeff and Jennifer. Because we all want Addison to get strong and healthy as soon as possible, she needs to get all the rest she can. This is usually accomplished with limited ‘touch times’. Julie and I can visit most any time day or night, but don’t get to touch or really talk to our little girl except at her feeding times.

While we were visiting with our little girl, her doctor stopped by to let us know they did have the results from the MRI which was done on Friday. He said that both the spine and brain looked good. He did say there was a tiny spot on the brain that didn’t “light up”, but it was nothing to be concerned about. He did say he wanted a pediatric neurologist to look at the scans for an expert opinion, regardless, THIS WAS GOOD NEWS and AN ANSWER TO MANY PRAYERS. Also during our morning visit, they took a sample of blood to test for myotonic dystrophy. They said it would be 10 days to two weeks before we would know the results.

Later on Monday, Julie and I met Johnny at the NICU to visit Addison. This time the nurses said the doctor wanted to speak to us again – usually we have to ask for him. Doctor Pickins said that Addison’s orthopedic doctor, Herndon, had been by to see her. Dr. Herndon was concerned about Addison’s right leg and ordered new x-rays of her legs (they x-rayed them on Wed when she arrived). They discovered that her right femur was now fractured. The doctors are puzzled by the fractures to her legs, since the other bones in her body seem to be perfectly fine. Dr. Herndon did say he would be back on Tuesday morning to fit Addison with her brace that should stabilize her legs and hips, and allow healing to begin. This should also make her more comfortable.

Just as we were about to leave, we had extended our touch time by 30 minutes or so, Dr. Pickins said the pediatric neurologist was in the NICU and we should wait a little longer. We certainly didn’t mind, as Addison was alert and watching our every move. Dr. Hille was the pediatric neurologist who came to see us. He reviewed the scan for quite a while then asked us to leave for about 10 minutes while he physically evaluated Addison. About 30 – 45 minutes later, he came to get us for his consultation. Dr. Hille confessed to us that he has never seen anything like this before. He said the brain scan looked good, and as far as he could tell the spine looked fine, but he would need to consult with other specialists. Dr Hille said it appeared to him that Addison’s upper body was responding normally for a baby her size and age, but her legs and lower body were not responding. He said he thinks the brittle bones are a result of the lack of movement from her legs and not a specific condition with her bones. He also said he did not think this was a case of myotonic dystrophy. Dr. Hille believes that it appears that her mental capacity is perfectly normal for a newborn, so this is definitely a blessing and encouragement to us. For now, we PRAY THAT THE DOCTORS AND THE SPECIALISTS WILL BE ABLE TO DISCERN WHAT IS CAUSING ADDISON’S LACK OF MOVEMENT OR THAT ADDISON WILL BEGIN TO DISPLAY MOVEMENT IN HER LEGS. Also, we are going to ask for a second opinion to be forwarded to a recommended Pediatric Neurologist in Dallas. WE PRAY THAT THE LOCAL DOCTORS WILL BE SUPPORTIVE AND ASSIST US IN OBTAINING THIS CONSULTATION WITH THE DALLAS NEUROLOGIST.

Addison Hope Mesa Arrives

10/4/06, Wednesday - Addison Hope Mesa arrives at 7:35 a.m. by c-section, weighing 7 lbs 12 oz. After months of watching her on ultrasound, we were finally able to see her beautiful face. She was immediately whisked away to the nursery for evaluation and they found that both hips were displaced and her left femur was fractured. Her breathing slowed during this evaluation, so she was placed on a ventilator and a pain drip from the intense pain caused by her legs. The Mercy NICU was full, so she was transported to Baptist NICU around 12:00 p.m. My sweet pediatrician, Dr. Tammy Maschino, stayed with her the entire time until she was secure on the ambulance. Phillip joined Addison at Baptist NICU and stayed with her the rest of the day. He said that it was heart breaking to watch her face and body quiver anytime that her legs were moved. I was only able to see Addison briefly and from a distance. The orthopedic specialist was able to see Addison and confirmed that both hips were displaced, the femur was fractured, and took some xrays.

10/5/06, Thursday - Phillip spent the entire day with Addison. Addison remains on the ventilator, pain drip, and IVs. The occupation therapist made her a temporary positionary crate to lay in before they can fit her with a brace/cast for the hips and legs. They will not be able to brace her until she is off of the ventilator.

My lifetime friend, Brooke, drove up from Ft. Worth to spend the day with us. (Prior to her mommy career she was a NICU nurse, so she offered us so much advice in addition to love.) After spending the morning with me at Mercy, she spent the afternoon with Phillip and Addison. She explained all of the machines to Phillip and took some of the sweetest pictures of them. Then she had them developed and brought them to me at Mercy.



Things appeared to be more positive today with most of Addison's problems being orthopedic with the exception of the ventilator, which appeared to be necessary due to the sedated state from the pain drip.

10/6/06, Friday: Phillip took a break and took Megan to the zoo on Friday morning. They needed to spend some time together after Megan being at Grammy and Papa's since Tuesday evening. While they were there, Addison's neonatalogist called him and said that the Genetic Dr. had come by and ordered a MRI of her brain and spine. This was to be performed from 1:30-3:00 p.m. With this, they would have to sedate her more and put her in a more paralyzed state. Phillip called me to tell me of the situation, so I called Addison's nurse to get more details. I was very emotional and fearful of the increased anesthesia. Also, I was crushed to hear that neurological problems were being considered again. After I was discharged on Friday afternoon, Phillip took me to see and touch Addison for the first time around 5:00 p.m. She looked lifeless and was still heavily sedated. The nurses appeared very cold towards us, which didn't help me as I left my baby under their care. The Doctor talked to us and said that it could weeks before they can determine all of her conditions and test results and that she could be on a ventilator, etc. for weeks up to months. The future was just completely uncertain at this point. Obviously this was not the news that we were hoping and praying for. As a result, I sent out an email around 11:00 p.m. to all of our family and friends to pray for Addison to build up strength quickly and that God would sustain Phillip and I during this emotional time.

10/7/06, Saturday: I decided that I would stay at home today. Yesterday was too much on my own physical recovery. However I asked my parents to go see Addison and spend some time with her. Around 11:30 a.m., my Dad called and said that she looked wonderfully. The nurses, whom appeared incrediblyloving and caring towards her today, said that Addison had made a turn for the better and was barely needing the ventilator and they were going to try to take it off that afternoon. After contacting the respiratory therapist, they were able to take it off at 12:25 p.m. while my parents were still there with her. She did great. PRAYERS ARE ANSWERED!!!

At 4:00 p.m., I was able to visit Addison again and able to hold her in her positional crate and offer her the first sugar-water bottle. She is still hooked up to the pain drip and protein IV for nutrients. The entire hour that I was there, her eyes were open and she would coo and talk to me. She didn't drink much of the bottle as she has lost her natural sucking reflex during the last few days of being on the ventilator. My spirits were lifted as I saw my little Addison Hope with life in her eyes and body. THANK YOU GOD and THANK YOU TO ALL OF YOU FOR YOUR PRAYERS! I went home and then went back again with Phillip at 7:30 p.m. She was still doing well off of the ventilator and they were going to start weaning her off of the pain drip overnight. We slept so much better tonight.


10/8/06 - Sunday: Phillip and I went to see Addison for her 10:00 a.m. feeding. They took her off of the pain drip overnight and have substituted it with regular Infant Tylenol for pain management. Also her IV came out and they had trouble restarting it, so they are going to try to begin feeding her the breastmilk instead of the protein IV fluid. Addison was once again alert for the entire hour that we were with her. She studied Phillip intently as we talked to her and touched her sweet skin. We will not be able to actually hold her until she is fitted with the brace for her legs. Hopefully this will happen early this week. Her sucking is getting better as she loved having her "soothie" paci in her mouth the whole time that we were with her. She is also jaundice and having to stay under the lights during her sleeping times.

PLEASE CONTINUE TO PRAY FOR HER STRENGTH TO INCREASE DAILY. SHE IS STILL VERY FRAGILE AND WEAK. Pray for Phillip and I to continue to trust God and his wisdom as we face the medical tests and questions in the upcoming week(s). Keep Megan in your prayers as she is shuffled around to family and friends during our hospital visits. Thankfully we have an incredible support system.

Megan is Two!

5/20/06 - Megan turned two. I cannot believe how fast the time has gone and how much she has learned in the last year. She loved her party and especially the cake/ice cream. She even successfully blew out her candles. How do they learn something like that? She actually asks for cake and/or ice cream every day now. I guess that she takes after her 'Mom.' Speaking of that, she calls us 'Mom and Dad.' I have never heard another toddler refer to her parents as such. We call ourselves Mommy and Daddy, but she is too lazy to say the whole word.

Florida Trip

A few of our favorite pictures of our Florida trip. We had such a great time. As you can tell, Megan loved the beach and all of the attention from her extended family.

A Warm Weekend

On Saturday Megan went biking with Phillip. I had to wonder where they had gone when they were telling me that they saw cows on the ride. Megan kept telling me about the moo cows. Apparently there is a field behind Edmond North H.S. that Phillip passed on the way to Josh's that has cows. I haven't driven by there yet to verify their story :)

Looking pretty in her spring dress for church.

YUMMY!

As you can tell, Megan loved the CHOCOLATE pudding!

Playtime

After a fun day at playschool, Megan enjoyed some time with her favorite activities at home: coloring and playing with her dolls and stuffed animals.

The Sweater

Megan's Grandma Jeri handknitted this sweater for her. The back is even more amazing than the front, but I haven't been successful in getting her picture from behind. As you can see, the photo sessions are very challenging since she likes to run towards the camera to see herself on the digital screen.

January Pics

After one of the warmest Januarys in Oklahoma records, we did actually have a few winter days. We celebrated my birthday on 1/10 with Megan's first sledding experience. She loved it. I actually made a few trips down the hill behind my parent's new house with her.

Thanks to U. Johnny, Megan is very fashionable in her animal print hat & coat.

This afternoon was more typical of our weather and afternoon playtimes.