INCREDIBLE NEWS!!

Incredible News!!!

UCLA called this afternoon and they informed us that they were officially taking Noah off of the Heart Transplant List.  The team met this morning to go over last weeks heart cath results and to discuss his case.  Noah is no longer sick enough to qualify for a Heart Transplant.  Praise the Lord!!  This does not mean that he no longer has Restrictive Cardiomyopathy it just means that he is not sick enough to need a new heart.  They will still see him at clinic every three months and he will remain on his meds.  They want us to celebrate but also want us to be aware that things could drastically change at any moment.  We are celebrating for sure.  What does this mean for Noah? Well we celebrate that his heart is doing well  for now but Noah is still very weak.  His muscular Dystrophy effects his breathing and many of his muscles.  Please continue keeping him in your prayers.  Were so thankful for the gift of time that God has given him with his own heart.  All thanks and praise to you great God of Love.

Fundraisers

Hello Friends,

I wanted to make you all aware of two Fundraisers we will be holding next month to help raise money for a Mobility dog.  On February 4th from 1-5 Faith Koontz and Greer Bascom along with several others will be putting on a Boutique.  Their will be lots of fun handmade things and baked goods on hand. I know so many of you have been working so hard on this event.  Please help spread the word and invite all your friends.  It is sure to be a fun event.   


The Second Event will be a Jog/walk-A-Thon and it will be held on Saturday February 25th from 8:30-10:30 at Heights Christian Junior high. The address is 12900 Bluefield Ave. La Mirada CA 90638.  If you are interested in Jogging/walking please contact Melody at lilmommamel@yahoo.com to pick up a pledge packet.  For those of you that attend Grace look for me tomorrow as I will have them to pass out.  This is open to all ages.  Their will be prizes, 50/50 raffle, and more so stay tuned for more details.

Thank you so much for all your support.  We are grateful for the ways we have already seen the Lord provide for this big need.

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Prayer for Noah

I wanted to remind you all that Noah has his Heart Cath coming up this Monday at 9:00a.m. For those of you who are new to our blog. Cardiac catheterization (cardiac cath or heart cath) is a procedure to examine how well your heart is working. A thin, hollow tube called a catheter is inserted into a large blood vessel that leads to your heart. They put Noah to sleep and they go in and are specifically looking at his heart pressures. They do this procedure every six months. Five years ago his pressures were a little below the normal range and he was put on the Heart Transplant List as a status two.  We held our breathe every time the phone would ring.  A few years ago his numbers were in the low normal range and doing much better.  They stayed this way for the next year and a half so the team moved him to status 7 on the list.  This means he is still occurring time but is not accepting a heart.  We are so thankful for how well Noah's heart is doing but we also never forget how fast his pressures could change and how big the possibility is of him going into cardiac arrest.  He still has a scary EKG that has been unchanged since he was 9.  It basically shows that he is in major heart failure.  The doctors are very puzzled by this and monitor him closely.  On Monday if his pressures are still good they will move this heart cath to every year.  This would be amazing! If they are not good he will need to become active again on the transplant list.  It's a procedure that none of us look forward to so will you please pray with us for good results.  Now that Noah is older it gets even harder.  He is processing all of this right along side of us. He understands it all and its a lot for a teenager.  Noah also needs to have surgery on his other foot.  Last year we were told that Noah has Tarsal Coalition in both of his ankles. Most likely a symptom of MD. This was causing Noah pain in both feet.  Since they do not do them both at the same time, we had them do the foot that was causing the most pain.  This was a bigger surgery with a harder recovery than we had expected.  We wanted to hold off on doing his other foot for as long as we could but it is starting to cause him a lot of pain.  Please pray for wisdom for us as we try to decide the best time for this surgery.  He is slowly showing more and more signs and symptoms of this Desmin Muscular Dystrophy that we both share.  I can't even explain to you how incredibly hard it has been for myself to walk through this and experience loss after loss but to watch your son struggle is 1000 times worse.  Even though I'm confident that the Lord is going to use him in powerful ways my heart hurts.  When he asks me if he might need a wheelchair one day I feel a sucker punch to the gut.  When he tells me it hurt to breathe at youth group, or his legs hurt from running, or I watch him struggle to play a game of football, open a jar, see his lack of muscle tone.  It all wrecks me.  Pray for Noah.  Pray that he would cling to the promises of God.  That he would trust in his goodness and truly believe that he has good for him.  Pray for Jason and I as well that we would believe the same.  Thank you for those that have carried us through these years and continue to pray for our family and thank you to those that are just discovering our story.  We are so blessed by you all.

Update

Friends you have all blown me away by your support and generosity.  In just seven days we have raised $9,850 all because of you.  This process has been similar to our adoption with Hannah.  Lots of paperwork, phone interviews, learning, eventually being matched, and patience on God's timing.  We know this will be a huge gift for our family and will make things so much easier in a lot of different ways for us.  We are so amazed as we learn all the things a dog can be trained to do.  I linked a couple videos in case some of you are curious.  A good friend of mine Faith Koontz, her mom Greer, and a bunch of volunteers will be hosting a Boutique fundraiser. It will be held on February 4th 2017 from 1-5 at 531 Chestnut St. LaHabra CA 90638.  There will be lots of homemade items, baked goods, and various vendors represented. Thank you to everyone who is helping. I was overcome by a donation that came in from a family who's child is battling cancer.  It's so hard sometimes to be on the receiving end but I get how Good it feels to give even when your facing your own trials. Sometimes its the people in the middle of the storm that get it the most. Thank you dear family for your generosity and please know that your family and your son will be in my prayers. I'm so thankful that these troubles even though most days it doesn't feel like it,  really are light and momentary compared to what Eternity will be like with our heavenly father.

https://youtu.be/9kPA7fQSAsM
https://youtu.be/5Nh1fS1N9NQ
https://youtu.be/3b8_-C4BB4g

For all my prayer warriors, Noah has a heart cath coming up on January 23.  Our prayer is that their would be no surprises and that he would have good numbers that allow him to stay inactive on the transplant list.

Thank you all so much again for all your love and support.