Friday, June 29, 2012


 We have to pray with our eyes on God, not on the difficulties.

On the last day of the NIH study (June 11), I spent about an hour and a half watching this sweet face during her MRI.  Although we don't have any results of the MRI yet, we know that it will more than likely show some brain abnormalities.  NOTHING serious just differences in her white matter that is common with Merosin Deficient Congenital Muscular Dystrophy.

During her MRI, they brought me a chair so that I could stay right beside Lily.  It was a great extended prayer time for me (in between giving her huge smiles and thumbs up).  Knowing that this test would show another difference in her sweet little body...most would expect me to sob throughout it, right?  Nope!  I spent my quiet time thanking God for each and every second that He lets me be Lily's Mama.  I prayed for wisdom as we learn more about her MD and seek out the best treatment for her.  There was no begging for healing, just a request that He use her to show us all how amazing He is.  The peace that I felt sitting there with Lily during her MRI can only come from God.

Don't worry about anything; instead, pray about everything; tell God your needs, and don't forget to thank Him for His answers. If you do this, you will experience God's peace, which is far more wonderful than the human mind can understand. His peace will keep your thoughts and your hearts quiet and at rest as you trust in Christ.  (Phil. 4:6-7)

Tuesday, June 12, 2012

NIH Day 2 Pictures

Motor Strength Eval

Follow the pen, Dr. Bonneman...Lily in charge, again!

Sophie and Lily, beautiful girls enjoying lunch

OT Eval

More Physical Therapy Assessments

All smiles...testing is done for the day!! 

Lily loves the indoor play area.

Ready for a trip to downtown Bethesda!

Beautiful Ella waiting for the Metro

Ella, Nevan, and Lily...loved meeting this sweet family from Canada!!  Great night out for dinner and ice cream.

Lily waiting for the metro...she wanted to get closer, NO!!

Great News

NIH Day 2:   Lily had another fabulous day.  She loves playing with her new friends and enjoys the testing.  The best part of the day was our meeting with Dr. Bonnemann, who is well known in the MD community.   After her muscle biopsy, our neurologist in Birmingham told us that Lily's Merosin is completely absent.  Merosin is the connective tissue within the muscles, we've done lots of research and have a basic understanding of this...not enough to explain it well.  Merosin basically holds everything together.

Silly Lily evaluating Dr. Bonnemann...this girl is always the boss :)

Dr. Bonnemann was surprised at how well Lily was functioning and wanted to see her biopsy and genetic testing results.  After several minutes of conferring with the other researchers in the room, with us having NO clue what they were saying...they finally explained that some of Lily's DNA codes could cause the muscle biopsy results to be inaccurate.  Based on her genetic results, Dr. Bonnemann thinks that Lily may be producing some Merosin!!!  He is requesting her muscle samples so that he can do different testing to confirm the presence of Merosin.  What does this mean?  Maybe nothing...but children who are Merosin deficient instead of completely absent MAY have milder symptoms.  Dr. Bonnemann explained that children who have no Merosin have very little chance of walking.  The presence of any Merosin can increase the chances of walking.  We were pleased to hear that, but are just as content with our Lily in a power chair as long as she is healthy.  I've said since we got her diagnosis that I don't care if she walks...I just want her to breathe!  So Dr. Bonnemann's next comment had us jumping for joy, it could also mean less pulmonary involvement!!!!

We are thrilled and can't wait to get the muscle samples to the NIH for more testing.  Regardless of the results, there is no guarantee of how Lily's MD will progress.  Every child's symptoms are so different, there is no way to predict what the future holds...just glad to know who holds our future :)  God has been so good to us!!

"For I know the plans I have for you...plans to prosper you and not to harm you, plans to give you hope and a future."  Jeremiah 29:11

Saturday, June 9, 2012

NIH Study

We are spending the weekend in Bethesda, Maryland so that Lily can participate in a study at the National Institute of Health (NIH).  It involves around 35 other children who also have Congenital Muscular Dystrophy.  It is an outcome measures study that will help determine ways to chart progress of future drug therapies to treat/cure CMD.
After the first full day, we are so thankful to be here...even if we are missing Reece and Mary Ashtyn terribly!  Lily spent the day testing and spending time with other AMAZING children like her.  We have been blessed to spend hours talking to parents who are on a very similar journey to us.  They understand what we're going through and it has been a relief to be able to talk with them about, equipment, power chairs, feelings.  We've cried, laughed, made fun of each others' accents, and watched our sweet blessings play. 
There is no way that I can describe how it's felt to meet these other children who also have CMD.  They are all beautiful children and most of them seem to be just as sassy and determined as our Lily.  It's the same spirited determination...the never give up, I can do anything mentality.  At breakfast this morning, I noticed a beautiful little girl waving to Lily.  Her father brought her over so that we could talk.  Sophie and Lily started a discussion about their shoes.  When Lily told her that she loved flip flops, Sophie asked if she tripped a lot.  Lily quickly said, "I can't walk".  Sophie sweet face lit up and she joyfully said, "I don't walk either!".  My heart just melted, it was the sweetest thing.  As Lily played in the indoor playground, a  little boy using the same crouch walk came over to see what she was doing.  She shouted, "Look Mama, he walks like me!".  What a blessing this has been.
Trent has pulled Lily in a wagon and raced with our new friend, Bean, who has a power chair.  Lily has gone from refusing to discuss riding in a wheelchair to wanting a power chair to race her Daddy.  She was able to use a KidWalk mobility trainer to "walk".  In just one day, her world has opened up even more with so many new opportunities for independence.

Lily's first test of the day

Physical Therapy Assessment

Pulmonary Function Test


The results will have to be read by a Dr...but the test administrator said the results looked average for a child her age!!!

Testing Done, Time for FUN!!  Wanna Race??

Not sure who had the most fun :) 

Victory!!  Only took 10 tries to win!  LOL  

"Beiber", "Mr. Crazy Guy" and Lily

Lily in the KidWalk

My Hero!!

Turning around to "walk" the other way

Painting with her new friend, Ella

Inside the playhouse with her new friend, who walks like her :)

This trip has once again reminded us that we are so blessed to be Lily's parents.  God has been so good to us and we are excited to see what tomorrow holds!

Wednesday, June 6, 2012

Birthday Boy

Reece turned eleven today!!  It's so hard to believe that he is growing up so fast.  His tenth year brought a lot of changes.  He started middle school, moved into a new bedroom,  got glasses, lost his glasses, and got contacts.  He became a big brother...a great big brother!!  He also lost his place as the baby of the family and became the middle child.  The only boy sandwiched between two beautiful, but annoying sisters :)  After 10 years of being the youngest, I know that has been a difficult transition for him.  I pray he realizes that no matter how big he gets or how stuck he is in the middle of his sisters...he'll ALWAYS be my baby!