Heavy News

Thank you all so much for your patience.  I so appreciate all your calls and texts.  It has been a hard day and we have been processing all that the doctor has shared with us.  We ask that you would be sensitive with the following information that we share.  We have not had a chance to talk to Noah today and are unsure how much information we want to convey to him at this time.  Noah did amazing today.  He did not seem nervous and handled things like a pro.  The procedure went very smoothly.   He is back home and doing well.  After  two hours the doctor came out and shared with us the following results.  He said that Noah in fact does have Restricted Cardiomyopathy and possibly some other myopathies.  He talked about Noah needing a pacemaker, defibrilator and  a heart transplant. This news hit us like a ton of bricks and we have been trying to wrap our heads around everything.  We are in communication with Hannah's doctor and hoping to get a more clearer picture of what lies ahead and when.  We have a ton of questions and not a lot of answers at this point.  Our hearts are breaking as we think about telling Noah that he will not be able to go back to normal activity.  But we are also thankful for how the Lord has worked and protected Noah this far.  We honestly can not imagine going through this hard season without the hope of christ.  Please pray for us as we endure many visits and seek many answers.  Pray for strength, peace, comfort, understanding and of coarse  Total healing(we have seen him do it before :) )  We are so grateful for you all and are going to need you more than ever.

Pre Procedure Blessings

Overwhelmed with gratitude today by the many ways people have loved on us this week. I constantly shake my head and tell Jason I just can't believe it. We are certainly not walking this alone.  You have all linked arms with us and have held us up.  Thank you is just not enough.  We are eagerly awaiting answers for Noah and tomorrow he will undergo a big procedure at CHLA. It is scheduled for 7 in the morning. He will have a Heart Cath done where they will do a heart biopsy as well as another test to check some electrical stuff.  We really hope this will give us some details about what is causing Noah's abnormal EKG readings and episodes.  We are not sure what to expect as far as how long we will be there.  If they do not have to do anything urgent we will be back home in the late afternoon.  If they do need to do something right away to fix the problem it could be a longer stay.  We will update soon after we hear some details.  They will go through his neck instead of the groin and will give him some verced before they put the IV in so that he will not be as anxious.  We have gone over all the details and have prepared him as best as we can.  He tells us he is not worried but has had many emotional breakdowns this week so we know it is making him a little anxious.  His sweet friend Abbie skyped him and prayed for him  and another friend from Friday school dropped off dinner for us all.  Jonah was determined to make him laugh so in Jonah style he came out with his sisters princess dress on and it certainly did the trick.  Noah was laughing so hard he couldn't breathe :)  We took him to the store to pick out ice cream.  He remembered us doing that for Jonah and so even though his throat wasn't gonna be sore he surely deserved some ice cream.  So Thankful for the many talks  we have had about God's goodness in the midst of trials.  As hard as it is to see my sweet boy go through this it is such a blessing to see him recognize God at work.  So now we wait and we put our trust in the Lord knowing he has Noah in the palm of his hand. Would you please Pray for good rest tonight and good results tomorrow.

Quick update

I just wanted to give a quick update.  Noah is going to have the Cath procedure next week on the 31st.  We are hopeful for answers and confident that the Lord's hand will be upon Noah.  Noah is eager to get it over and hear the doctors say he can go back to normal activity.  So far he is doing well and not nervous about it.  I'm sure as it gets closer that might change. We would appreciate your prayers we really have no idea what to expect and sometimes not even sure what to pray for.  Sorry this is short.  Just feeling emotionally and physically wiped out :(

A sweet conversation

Thanks so much for all your prayers.  Last night went better than we had anticipated.  The smart little guy figured out by our serious somber faces that he would indeed need to have the long awaited catheter test and told us he was fine with it.  He said "thats okay I will be asleep right"?  We told him everything the doctor had told us and he seemed to be at ease.  He was great until we told him that the doctor wanted him to go back to no activity.  This broke his heart and he began to weep.  He is just like any other nine year old boy  who wants so badly to run and jump and play.  We talked a lot about pain and suffering and how God uses this in beautiful ways to bring about his beauty.  I can't expect him to get it, the Lord knows I did not at his age.  But our prayer is that this will draw him even closer to him and that he will see glimpses of his goodness in the midst of hard circumstances.  We focused last night on the many blessings God has given us in our life including his baby sister and how she had to suffer for 17 months in order to become part of our family because that was how God used her sweet life to impact many for his glory.  He loved hearing that and begged us to go get another so she could have a sister. This is something he asks for from time to time.  We told him God is using us right now to take care of the babies we have but that he could pray about it :).  This is going to be a lot for him to process and we want to allow him to go through all the emotions encouraging him to give it to the lord as well.  Proud of his maturity through it all and the fact that he is able to communicate well.  We have a lot of fun things planned for the summer and are trying to concentrate on that and take things as they come.

So grateful for my family.  I had a wonderful Mothers day.   I took both my mom and mil to our ladies tea at church.  Sunday we went to family near by and had a nice lunch and then the boys helped daddy make dinner,. They got a lovely strawberry pie,gift certificate to glen ivy, movie and allowed mommy to relax.  It was perfect.  It is moments like these that I cling to.  Sometimes things feel out of control but we are thankful that we can take refuge in the shelter of HIS wings where we are absolutely secure.

Unexpected Phone Call

Today I had hoped to give a recap on my Wonderful Mothers Day.  Which I will in another post soon.  Instead I need to tell you all about an unexpected phone call and ask for some urgent prayer.  Noah's cardiologist called today.  He told me that he had met with the Electrophysiologist he was referring us to and talked about Noah's case for over two hours.  He feels that after talking with the Cardiologist that Noah Urgently needs to have a heart cathertization and heart muscle biopsy.  He began to talk about how they both feel that he has heart block, but also may have Restrictive Cardio Myopathy or  Brugada Syndrome.  Wow that was a lot for this momma to hear.  While I'm very thankful that we are finally headed in the direction of answers, it is going to be hard to watch our boy go through such heavy things.  Many of you know how excited he was to be granted some limited play.  Now we have to tell him that it has been taken away once again.  My heart just breaks as I know he is going to be devestated to hear this as well as the upcoming tests he thought he did not have to have.  Please pray for his heart, that the Lord would give him peace and understanding.  That he would understand how the lord is using him and consider it pure joy.  Please also pray for Jason and I as we tell him, that the lord would give us the words. We plan to take him out tomorrow so that Jason and I have time to let this settle in and pray over this difficult conversation.  They have put the request in for the procedure and are thinking this will happen the beginning of June.  Thank you all for the many ways you have loved on us and walked through this with us.  We long to have all these health struggles behind us soon but also do not want to miss what God is doing in the process.

A little good news goes a long way

I love when I can share the good things that happen on our journey.  We could use some too it has been a weighty season.  Well Hannah had her appointment with the plastic surgeon yesterday.  We were sent to him because her nevus birthmark on her chest had grown in a year and they were concerned.  The doctor said that he wouldn't even consider removing it for at least five years.  He would want her to be completely healed from her next surgery before approaching it.  He explained that there isn't any real danger for her and that they will keep watching it.  Yeah.  GOOD NEWS!!!  Then today we had our appointment with Noah's cardiologist at CHLA.  After much pushing we finally got him to agree with us that Noah needs to see an electrophysiologist.  This is a doctor that specializes in the electrical conductivity of the heart.  GOOD NEWS AGAIN!!!!  This is good news because in our hearts we have believed all along that Noah has an electrical blockage like his momma.  I inherited mine from my birth father and if it follows suit it just makes sense.  We are just so happy to have some direction for him.   Please continue to pray for him.  Pray that God would protect him while we wait for answers.  Most importantly pray for complete healing.

We are eagerly awaiting summer and have begun making our summer fun check off list.  Fun things include: Camping in the back yard, backyard movie night, baseball game, Hume Lake, smoothie making contest, fancy movie night, Splash, and about a couple dozen more.  I'm looking forward to a less compact schedule and just enjoying some family time.

Praise!

This week has been so great.   I got the opportunity to go to the Orphan Summit Conference.  This is a conference on all issues dealing with the Orphan.  It was encouraging and inspiring.  The best part for me was spending some great time with some wonderful woman that I adore so much.  Thank you ladies for loving me so well.  It was a hard week for me physically and these gals were so aware of my needs and I felt very taken care of.

Hannah had her appointment Thursday.  My stomach was in knots because I truly felt like we would end up in the hospital.  I'm happy to report that the doctor was not very concerned with her oxygen drop.  He felt that it could have been from an earlier sinus infection and antibiotics.  Her echo report looked great.  He wants to see her in three months where he will then schedule the cath test.  He also mentioned doing surgery after she turns four in November. This was a huge praise.  We are so thankful that everything looked good.  He was actually more concerned with Noah.  He feels strongly that we need to change Noah's doctor and gave us a name of another doctor in the group.  Jason will call on Monday to see about getting a referral.  With an HMO we have to jump through all the hoops.  Please continue to pray that we would get some answers soon about Noah's heart.