Wednesday, July 30, 2014

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.




Sunday, July 27, 2014

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.

Tuesday, July 1, 2014

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.

Wednesday, June 18, 2014

Hannah's Surgery


Hannah’s Surgery

Today we met with Hannah’s surgeon Dr. Gates.  I have to admit it was a little overwhelming to sit across the room from the man who played a big part in helping save our little girls life four years ago.  We discussed the process of the Fontan operation Hannah needs to have and what it would entail.  He mentioned that it should be done this summer and we told him we would like to schedule it as soon as possible.  We explained that Noah was expecting a call for a heart and they could not take him off the list for this surgery. He looked at his books and said he could do it this Tuesday.  So Tuesday it is.  This will be an open heart surgery where they will go in and put in a conduit shunt. We are feeling many emotions right now.  We have dreaded this surgery for the last four years but also know how necessary it is. We are eager to get it behind us.  We are fearful of getting a call at the same time and having to split ourselves up to care for two of our children across town from one another.  We are scared of the actual surgery, we are concerned how Hannah and the rest of our kids will process this all.  Concerned how I will keep up physically and so much more.  We do know and are confident though that God has been in control and has known the timing of this all.  He will give us the strength we need to face whatever comes our way.  So thankful we do not have to walk this alone. The song thats ringing through my mind tonight is   “His power Will Prevail.” The lyrics are below.  Please continue to lift our family up in prayer.  We would love more than anything to be a light at CHOC where so many people are experiencing darkness.  Thankful for you all.





Rest assured today that the Lord your God 
    is the One who goes ahead of you
He will put the enemy to flight; 
    what He’s promised He will do
Like a raging fire, He consumes the foe; 
    making Satan and his forces go
We don’t have to fear, God is on the throne, 
    His power will prevail

God’s deliverance is as good as done; 
    who could ever count the victories won?
With a watchful eye He protects His own; 
    He’s the Shepherd, we’re His sheep
When we go to Him with an urgent need 
    He is always there to intercede
We don’t have to fear, God is on the throne, 
    His power will prevail

Each temptation here, every trial we face 
is surrounded by His awesome grace 
Supernaturally strength is given us 
    so that we might persevere 
God is never late, help is on the way; 
    He is faithful in the day-to-day
We don’t have to fear, God is on the throne, 
    His power will prevail

Monday, June 9, 2014

Summer Fun


Summer has started and I officially have a Middle Schooler, a Third Grader, and a Kindergartner.  It is so hard to see my blessings grow older.  Every Summer we create a  list of fun things to do.  Since we will have a surgery (possibly even two) this summer the list is short.  We are determined even in the midst of a hard season to have some fun.  We will miss our favorite family vacation up at Hume for the third year in a row.  It breaks our hearts but we know one day it will happen again and are thankful for great friends who help us pull off Camp Lietzau as an alternative. We are thankful to live in a place that offers so many fun things to do.  Heres what we have planned. We look forward to hearing how you all spent your summer. Thanks again for following us on this journey.



Smoothie Making Contest
Video Scavenger Hunt Competition
Angels Baseball Game- come join us
Smores
Backyard Movie Night
 Shaved Ice
Beach Bonfire
Splash Water Park
Kids Make Dinner
Camp Lietzau
Individual dates
Fishing
Vacation Bible School  
Swimming With Friends
Homemade Ice Cream
Game Night
Reading Program
Movie Theatre
Baseball Camp
Lego Engineer Camp

Sunday, June 1, 2014

Heart Cath Procedure on Monday

Some days are just so incredible that you never want the day to end.  Then there are some days that are so incredibly hard you think to yourself how did I make it through the day.  Well Friday was one of those difficult days.  Two doctors appointments, several errands, and our youngest blessings recital.  Two extra kids added to the mix that were suppose to spend the night but ended up going back home late that night because our youngest boy started throwing up out of the blue.  We think his body did not like the goodies and jumping on the trampoline.  It was a non stop, just take a breath, and press on kind of a day.  I'm thankful that I can look back and laugh at how crazy it was.  I'm thankful that God does not allow me to be defeated by these hard days or moments.  Instead he reminds me that he is carrying me through and has a plan in all this.


Friday we met with Hannah's cardiologist Dr. Chang.  We were there to discuss her upcoming heart surgery. It is now time to schedule it and there are so many emotions and concerns that are flooding our minds.  Tomorrow she will undergo a heart cath to take a closer look at her heart and check the pressures.  They will put her under anesthesia and either go though an artery in her neck or groin.  It's never easy when your child needs to be put out,  and it's even harder when your child has a heart condition.  Based on what they see with Hannah's heart will determine how soon they will schedule surgery.  We are thinking July.

Please pray for Hannah tomorrow.  Pray that God would protect her, and that the doctors would not see anything alarming or that surprises them.  Pray for Jason and I that we would not be consumed with fear but that we would have faith resting assured that God is working all things for good.





Sunday, May 25, 2014

A More Detailed Update

Thank you so much Marla for giving everyone an update.  It has been a a lot for us all to process and we are still taking it all in.  Months ago Jason, myself, and Noah had a full genome sequence panel done.  We were hoping they would find a genetic link between Noah and I.  After waiting for over three years I was relieved to finally have some answers.  Noah and I both have a very rare genetic disorder called Desmin Myofibrillar Myopathy.  It's so rare that there is not a lot of information on the disease.  They have only recently discovered the disease within the last 6-8 years.  Our next step is to meet with genetics to go through counseling, gather information, and get Jonah tested.  This disease is very familial so the chances of Jonah having this disease are great.  If he tests positive we do not know how and when the disease will present itself.  I was 19 and Noah was 9.  I'm feeling thankful that God protected my life and I was able to get my pacemaker before this disease was even named.  We are also very thankful that we have caught Noah's cardiomyopathy early and that God's hand of protection has been on him. These are the biggest threats with this disease.  The other major concern is Respiratory failure.  The respiratory muscles become weakened because of the skeletal myopathy leading to possible death.

All of this is not what we had envisioned for our life and there is a lot of grieving however we still have hope. With Jesus Christ there is always hope  We can trust in him alone and trust that he is working all things for good.  We know and our confident that this is all part of his wonderful plan.  I know that he purposes these things for our good. I know that all these trials and all this suffering is so that the works of God can be displayed.  I believe these truths and hold onto them every day.  It doesn't mean I have to like this though, it doesn't mean that it's not painful and that I can't cry out to the Lord to take it away.

Romans 8: 22 says

 22 For we know that the whole creation has been groaning together in the pains of childbirth until now. 23 And not only the creation, but we ourselves, who have the firstfruits of the Spirit, groan inwardly as we wait eagerly for adoption as sons, the redemption of our bodies. 24 For in this hope we were saved. Now hope that is seen is not hope. For who hopes for what he sees? 25 But if we hope for what we do not see, we wait for it with patience.

Please pray that we would focus our minds on God's truths and his goodness and not be consumed by fear.  We desire to live each day with hope and joy.
Noah's appointment went well.  They can never really give us time limits for a heart for him.  They can only go by where he is on the Unos list, trends, and how often they have seen his name come up.  They did remove some avoiders. We did not ask what they meant by that.  We assume they mean peramiters they set at the beginning when they felt like we had more time.  They feel by doing this that it will help speed things up for him.  They also suggested we schedule Hannah's surgery right away since it needs to be done this summer.  They do not want to take Noah off the list for this which causes me great anxiety but again God will supply what we need and already knows the timing.  All I can do is trust.
It was a lot to take in so we appreciate your prayers as we make appointments and trust God with all the timing.  We are so thankful for the ways you all come along side us.  We are thankful to not have to walk this road  alone.  We feel very supported and truly thankful for you.