Oh So Weary

I wanted to give you a brief update on our family and ask that you would continue to keep us all in your prayers.  This has been a looooooong journey and we want to thank those of you that are still checking in and lifting us up in prayer.


Noah-  Monday I dropped Noah off at golf camp and explained to his instructor all about Noah's condition.  A few hours later I get a call that Noah is not doing well.  Noah was dizzy, his breathing was labored, he had rapid heart beats, and was finding it difficult to keep up with the walking on the coarse.  I was super nervous when I got to the coarse. Noah was emotional and crying that he just wanted his new heart.  It was very hot and humid and that alone can do a number on cardiomyopathy patients.  Noah has learned over the last two years to self regulate.  This means he can run around but the minute he feels anything he stops.  This was a situation that he could not do that and unfortunately the instructor was not listening to Noah.  He knew his body needed to stop but the instructor was not letting him.  He will be seen at UCLA tomorrow for a full work up and we would appreciate your prayers.  As Noah is getting more and more fatigued and not feeling great he is also getting inpatient.  He has broken down a few times and wants more than anything to feel better.  It makes me anxious and it breaks this mommas heart.


Jonah-  Because of our family history Jonah sees the cardiologist once a year for a work up.  Since we found out a few months ago that Jonah tested negative for the rare disorder Noah and I share, I was expecting todays appointment to be uneventful.  Well I should have known that is never the case with our family.  Jonah's EKG came back showing some slow abnormal rythmns.  He left the office wearing a 24 hour holter monitor.  Hopefully this is no big deal as this momma is reaching her limit on how much more she can take.

Hannah-  Praise the Lord this sweet girl is doing amazing.  Her oxygen levels were 98 today.  she is not getting out of breath and has more energy than I can handle.  The doctors couldn't be more pleased at this point.

Jason-   My sweet husband carries the weight of this family on his shoulders and it is a heavy load.  Please pray that God would give him the strength he needs to endure each day.

Mel-  I recently went to UCLA for a swallow test.  We found out that my tounge and swallowing muscles have been affected by this wonderful MD disease.  It is mild now and nothing I can do except eat small, slow, and often.  I will be having pulmonary testing next to check my breathing.  The danger with this disease for me is that eventually it could effect my respiratory muscles.  Other than that I have been focusing on trying to do things I have always wanted to do before this disease progresses any further.  We recently had fun renting segways, and I even tried horseback riding for the first and last time.  Hey some things just aren't for everyone :)

We trust in God's perfect plan but friends there are days when we are weary. Days when the journey seems long and we don't have much steam to press on.  Pray that we would be obedient to press on in faith, that we would be consumed by his love, and that we would experience his peace that transcends all understanding.

Angel Game #3

Thank you so much for those that came out to support us at the Noah's Heart Angel game.  We had a great time.  It was a fun night but I  was not prepared for the flood of emotions that came over me.  It started when Uncle Josh told Noah he was going to get to put the game ball on the pitchers mound.  Noah was excited and super thankful.  He hugged his uncle and said thank you three or four times.  I held back the tears as I watched him. It was difficult being faced with my physical disabilities and realizing the progression from the last two games.  Next was seeing Noah have his moment on the field and realizing that on the same field last year our close friend Geoff shared in a special moment with us between his cancer treatments.  Geoff was the healthiest he had looked in months and so happy having a special date with his bride.  He died months later and I miss him dearly.  The next moment came when we surprised Noah with a special guest.  His co-op teacher of three years Mrs. Barneson came.  When he saw her his eyes lit up.  He hugged her tight for what seemed like 20 minutes and began to cry.  She holds such a special place in his heart and he was overcome to see her.  Also realizing we have done the Angel game for three summers now and we still haven't gotten the call was hard.  As much as we try to be patient it is hard to wait for something we know has to happen in order for our son to live.  It was so great seeing Noah have a blast with his buddies, the Angels won, and the fireworks were awesome.  A great night to remember for sure.  Thank you so much Josh and Jamie for giving Noah an incredible three games that he will remember for a lifetime.

Grateful

After only six days in the hospital, Hannah got to come home yesterday. It felt so good to have our family back together and in our own beds.  It has been amazing to see how fast this sweet girl has recovered. She is doing amazing.  She continued to blow away the doctors with her progress each and every day.  Hannah went in Tuesday morning for open heart surgery and the placement of a permanent pacemaker.  She now has a conduit shunt helping to supply blood and oxygen to her heart.  Her oxygen stats went from being in the low 80's to now 98-100.  We have noticed a significant increase in her color and look forward to seeing her run around without getting winded.

It has been an emotional six days for us.  We spent time with nurses and doctors who were all apart of saving our girls life four years ago.  Her hospital room was directly across from the room where we heard doctors tell us she wasn't going to make it.  The same room where they worked on our sweet girl for three hours, pumping her full of meds to keep her stable.  We spent time with another family from our church who had been at CHOC for days with there daughter who underwent brain surgery.  We had an interaction with a family I had met by chance weeks ago at Dr. Changs office.  She was waiting for a heart/lung transplant for her one month old.  Her daughter had gotten influenza and was in the CVICU.  Our hearts were burdened for this family who felt hopeless.  We prayed for another chance to talk with them and were disappointed when they were discharged the next day.  Happy she was well enough to go home though for sure.  You see so much pain and despair when you are in the CVICU.  It made us that much more thankful and aware of our need for a Savior.  I don't know how people walk this life without Jesus.  I chuckle as I look back and see how much better it is to have Hannah and my surgery behind us. It wasn't how I saw things going but once again God's plan is ALWAYS the best plan.  I feel hopeful as we anticipate Noah's transplant that we will someday settle into a new normal.

A few days before Hannah's surgery I received a call from a sweet girl Samantha.  I did not know her but she explained that she worked for Noah's orthodontist and had recently heard of our family's story.  The Lord had put our family on her heart and she felt extremely burdened to do something.  She asked if she could meet with me to hear more about our story.  I told her Hannah was getting ready to have surgery so we didn't have time before.  I told her she was welcome to stop by the hospital since we had anticipated a long 14 day stay.  Samantha had decided to come by Monday.  We were surprised to hear we were going home that Monday so Samantha met us at our house instead.  This sweet girl brought us dinner and a beautiful gift basket.  She sat and listened to us tell her all that God had done over the last five years.  There were tears and smiles as we all recounted the beautiful ways God was at work.  we got to hear Samantha's story and her struggles and it became apparent that God was using her in big ways to impact his people.  We are so thankful for a new friend and the way that God encouraged her to reach out to us.  Don't you just love the way God works.  I don't make this stuff up people he is constantly showing himself in beautiful ways.

 Hannah is still recovering and we have a ton of appointments over the next coming weeks.  Please continue to pray for her. that she would remain stable and continue to heal.  Thank you all for your outpouring of love to our family this past week.  We are thankful and have been so encouraged by it.