Counting Our Blessings

Counting Our Blessings

Tuesday, January 29, 2013

Unexpected Trip To UCLA

On Monday Noah was telling me about every ten minutes or so that his head and heart were hurting.  He has lots of different chest pain episodes that he experiences on a daily basis but the head hurting was a new symptom.  He gets these shooting pains to his head for a few seconds and then they go away.  It is not a headache and he will get them often and they go away after about 30 seconds.  I decided to call UCLA to let them know.  They like us to keep them informed of any new symptoms.  They asked us to come in first thing in the morning.  Our appointment was at 9 a.m. so that meant we had to wake up super early.  If you know me well then you know I'm not an early bird :)  We met with the whole transplant team including the dentist. Ha! Did you know a dentist was part of the team? Well neither did I.  Pretty cool since I had a few questions for the dentist.  We saw the nutritionist, transplant coordinator, social worker, and doctors.  Noah had an EKG, echo, labs, and they put a 24 hour holter heart monitor on him that will record all his heart activity. It was an extremely long day.  The most exciting part of the visit was when the Transplant coordinator told us that she had seen Noah's name come up on the list several times.  WHOAH!!! That kind of took our breath away.  What does this mean?  Well when a heart becomes available in our region UNOS will call UCLA and give them a list of names.  They are to call the first one first and if they can't except the heart they go down the list.  You know that it is getting close if your name has come up on the list.  This was very exciting to us yet frightening all at the same time.  It just makes it that more real.  We learned that they get calls for hearts often but that UCLA is very picky about the hearts they accept.  They want the absolute best for there patients.  We love that about them and it is why they are one of the top in the nation.  We will keep you all updated on what the doctors find with Noah's test results.  Our prayer is that he would remain healthy and strong.  He had such an amazing attitude today and was telling riddles to the doctors and nurses.  Reminded me of the Wicked event when he was amuzing all the ladies with his jokes and humor.  He is so strong and knows God's got this.

Saturday, January 19, 2013

4 Months

Today marks four months that Noah has been on the list for a new heart.  It has been a hard four months as we wait for a tragedy to occur so our child can have a heart thats not sick.  That honestly is the worst part.  It just breaks my heart that a parent is going to be in a position where she will be asked to make a decision to give the hugest gift to another person.  These days we live minute by minute making sure our phones are charged and we are prepared to leave in a flash. Honestly though I doubt we will ever be prepared.  Last night we took the boys to see the "How To Train Your Dragon" live arena show.  Sitting in the show of this crowded arena I thought to myself, we could get the call right now and these sweet boys who are smiling and having a blast would have to be hauled away to the hospital.  Luckily that was not the case but I wonder every day what we will be doing when we finally do get the call. I don't always stress about it but it certainly never leaves our minds.   The only thing that gets me through these awful moments of thinking about this is knowing that my heavenly father has it all planned out already and he works all things for good.  When I'm feeling super overwhelmed by it I cling to his word. We just have to trust in his perfect plan no matter the outcome.  I'm trying hard to "Surrender".  I struggle with the wanting to know and wanting to have a plan.  That is why I chose Surrender for my word this year because I believe God is stretching me to surrender to his way and his plan.

Saturday, January 12, 2013


I apologize for the lack of updates.  Truthfully there is not much to report on.  We are just waiting for the call.  Noah continues to do well with the occasional bouts of fatigue.  He is trying to stay healthy and our biggest prayer is he stays that way so that when we get the call he is well enough to accept the heart.

 We had a chance to meet Aiden and his family for some fun dessert and fellowship last week.  Aiden is the boy we met at the transplant party.  He has the same diagnosis as Noah.  He is 8 years old and had his heart transplant when he was just four years old.  We had a wonderful time getting to know them and asking them more questions.  We found out that the hardest part after transplant is adjusting to taking so many medications and the DIET. We were never told that the diet would be so extreme.  No sugar, enriched flour, dairy, and fats.  These foods can cause diabetes and other risky diseases due to the high immunosuppresants he will be on.  WOW!! Jason and I both felt sad for Noah and scared at having to drastically change the way we eat and shop.  Again Noah accepted this news as he always does with such maturity.  He asked a lot of questions about what he can eat and is thinking of creative ways to make the recipes he enjoys. So if you have good recipes please pass them our way.  He really inspires and encourages me to have the same attitude and perspective when things don't go the way I would like them to go.  I just love that boy.  He had the same response to his flu shot yesterday.  He truly is one of a kind.  I know I know I'm bragging but thats okay I'm his momma it's allowed :).

We had a wonderful Christmas and are just feeling so hopeful about this new year.  We are right where the Lord wants us and we will continue to press on and live for our king.  Seeking his will above our own.  We don't want to waste this diagnosis but embrace it and view it as a way to honor the Lord and allow him to do his work through it.  Last year I chose a word that I wanted to embrace for the coming year and that word was "Hopeful".  I have to admit this one was a struggle for me at times but feel like I have more hope going into 2013 then I did at the beginning of 2012.  The word I have chosen for 2013 is "Surrender".  I want to surrender to the Lord's will above my own.  Please pray that I would work on Surrendering it all.  Laying it all at Jesus feet.

 We wish nothing but God's richest blessings for you all this coming year.