Still Waiting

I have not had access to the computer much of the last week because I got sick too.  Isaac was still sick, but I did not come home in the case that I would recover quickly.  I did not want to catch what Isaac had.  I spent four days over at my grandmas house, which was neat.  That is something I hadn't done in years.

I have not been to the hospital in 6 days.  We were scrambling trying to find people that were healthy and available to go up and sit with Nathan.  Thank you Jane and Grandma Linnie!  It was a blessing to us, and Nathan.  Yesterday for the first time in over a week Shawn was able to go up and be with Nathan.  There was a possibility that Nathan was going to have a double surgery this coming week.  He will not have a surgery at this time, it has been postponed to a later date.

The past few weeks have been filled with many disappointments and trials.  It has been hard.  Honestly at the moment I'm angry with God.  I know that he supplies the strength we need for each moment, but it doesn't mean that I like that this has been so hard. He says come to me those who are weary and I will give you rest.  I know his word is true, but I am still waiting for rest.  The past couple of days I feel like I am alone, as far as human beings on this plant.  There is no one to help ease my burden, and so many are giving me more burdens to bear.  My heart has been heavy, and I have been weary.  I am pressing into God as angry as I am with him.  He will be faithful and fulfill his promises . . . 

I am thankful that we have a God who will never let us down, because so many times the people we are closest to will.  Don't put your faith, or hope, in people.  Put your faith in our Lord Jesus, who loves us unconditionally.  Right now even some of my closest relationships hurt.  God wants me to completely depend on him.  Just like so many other times, he takes everything away from me.  Its a painful process that I hope I will take with me when this trial is over.

Rejoice . . . God is still answering prayers.  My boss is willing to work with me so that i will be able to work remotely for the next 6 months.  It is a huge answer to prayer.  Hopefully Nathan will be coming home this coming week.  Now all we are waiting for is for all of us to be healthy.  Thank you everyone for your continued prayers.

Sad

The past couple days had been filled with disappointments.  Today my heart is broken.  Cristina was a beautiful 6 year old girl that has been back in the bone marrow unit with us.  She passed away this morning.  Two months ago, she had her first stem cell transplant.  She did great, but the cancer was not gone.  She came back 2 weeks ago for a 2nd transplant while we were still in the bone marrow unit.  She passed away into the arms of Jesus.  I couldn't bear to hear her cries of pain.  It seems so unfair for children to suffer like that.  It is hard to understand.

She would always waive at me through the door.  I even had the privilege to do crafts with her.  Her smile would light up the room.  Even when she wasn't feeling well she would still waive.  Her parents faith in our Lord was a testimony to all.  Her dad always has an amazing optimism and a strong faith in God.  Her mom has an amazing strength.  Please pray for Cristina's parents and brother and sister.

On another note we didnt get to come home Thursday because Isaac is sick.  It is the third day that he still has a fever.  I can't be with him, because I cant get exposed.  I want to make it all better.  The longer he is sick, the longer we can't come home.  I am worried for him too.  My heart is aching.  There are some other issues with Nathan, but it is looking very good that we will get released on Monday either.

Prayers answered by disappointment

Today should have been an incredible milestone and the day my family was to be united for the first time.  We were supposed to take Nathan home from the hospital, but Isaac got sick 2 hours before were supposed to leave.  At first I was angry with God, everything has to be so hard.  I had looked forward to this day for so long.  But then I realized he answered prayers by keeping us here, to keep Nathan healthy.  God allowed Isaac to get sick while Nathan was still in the hospital instead of when we were home.  Even though it wasn't the best circumstances, God protected Nathan.  

The last week has been a flurry of activity still trying to get the house ready, I had to go back to the ER last Friday because of pain.  I'm sorry I haven't been good about posting, emailing, or calling people back.

Nathan is a sweet boy.  His smiles and dimples still melt everyone's heart.  When people come to his window to talk to him, he breaks out in a huge dimple grin.  He is getting very close to turning over.  He is getting so vocal, and making lots of new noises.  Isaac is filled with joy.  He makes up his own songs to sing.  Last night he was singing about how he loves the moon, and that the cow goes moo.  He has A LOT of energy, and is filled with laughter.  He is compassionate to other people.  The other day when I was hurting, he brought me a bottle of water and said, "Here Mommy, take a drink.  It will make you feel all better."  I am thankful for both of my boys.  

Last week, Nathans heart dramatically got better.  There was months without any change to his condition.  The Dr.s are amazed how from the last test 2 weeks ago there is such a dramatic change. I give all credit to God, who was answering many prayers.  He still has a slight thickening of the ventricle wall, and will continue on medication, but it is significantly improved.  He still is not eating very well.  They say if he loses weight we will have to do a tube again.

I am overwhelmed by so many emotions.  I am sad, it will be hard to leave.  There are many friends we are leaving behind.  Many who have supported us through a very difficult journey.  There will be a big transition for everyone.  I am a little worried.  I have been praying for Isaac.  He will no longer be the only one at home, and will have a little brother requiring a lot of care. I know do not be anxious about anything right.  That is a sin I still struggle with.    Emotionally this journey has been very hard for me, it will be a long healing process.  I am dealing with Post Traumatic Stress Disorder , social anxiety, and many other things.  

We will be released to my Mom's house in Saint Louis.  We are be required to stay in the area for 6 months for follow up treatment.  We will still go into the hospital 2-3 times a week for outpatient care. Everyone's outside activity will be severely limited.  Nathan cannot leave the house but to go to the hospital.  Isaac cannot go most places, since he could transmit a virus to Nathan.  I even have to do grocery shopping in late hours to reduce exposure.  We will be setting up Nathan's IVs and medications at home, which is a little overwhelming.

If you could still stand with us in prayer, this journey is not over.    Pray for Shawn to be head our household according to God's word.  Please pray for our marriage.  Pray we would submit to God, and lovingly serve each other.  Pray for me to be the wife God has called me to be.  Pray for Nathan to eat so he will not need tubes.  Pray for protection for Isaac's spirit in this time, that he will still get the positive attention he needs.

This has been a disappointing and roller coaster of a day.  God is good, and he will continue to answer prayers.  

Rejoice! 7 Days Count Down

Nathan had another follow up echocardiogram yesterday.  For weeks his condition had remained unchanged.  I was actually thankful, at least it had not gotten worse.  Then cardiology called yesterday evening to ask if Nathan had got the echo done, which was wierd.  They said it looked so good, they didn't think it was his!!  The formal report had lots of big words, but the thickening of his heart is significantly improved.  I don't think his heart is normal yet, but this is great news!  God is good, and we are so thankful.  Than you for being faithful in prayer with us.  Little Nathan is a testimony to the good works of our God.

He still is not eating well at all.  Yesterday the doctor said the tube word, I am not happy.  Please pray that he starts eating so we do not have to do tube feedings again.

We will be "home" to my moms house in 7 days.  It was so much work to get the house ready.  I think we are finally ready.  We are still getting some things, but the cleaning is done.  There are lots of details would never have thought about.  We can not use hand towels, we will have to use paper towels.  I dusted the tops of the air ducts in the basement . . . . and the list goes on.

I have had to do so much that I wasnt supposed to do after my surgery.  I am praying that I did not do damage to my body.  I might have a hernia though, so I will call the doctor today . . . .

We are so thankful, we are rejoicing.  God is good.

9 Days and Counting

We will be released to my moms house in 9 days.  It will be bittersweet to leave our extended family here at Cardinal Glennon.  I am looking forward to my two boys being together, and to be able to be with Isaac again.  It will be sad to leave our new friends here, and those who have helped us walk this journey.


We have been working feverishly to get the house ready for Nathan to come home.  There wasn't any rest after my surgery, there was so much to get done.  I just keep praying for God to protect my body becuase I have done everything I'm not supposed to.  Its not much better at the hospital, Im not supposed to pick up more than 10 lbs.  But I pick up Nathan alot.


Nathan still is not eating well at all.  They are expressing concerns over his nutrition.  They have even discussed letting him try PO, then putting a tube down to feed him the remaining milk he doesn't eat.  I really don't want to have to do that.  He still has an enlarged heart, and a thickening of the ventricle wall.  We are hoping that will resolve over time.  He is getting more hairy with each day.  His eyebrows look like fizzy catepillars that will crawl off his face at any moment.  The backs of his ears are so dark with hair, it reminds me of a werewolf.  He has his beautiful long lashes back, and gorgeous blue eyes.  He has a smile that melts everyone's hearts.


My little Isaac, he who laughs, is continuing to keep all of us laughing.  He enjoyed the World Series, and even knows some of the players names.  "Go Yaddie, hit two home runs."  He loves to sing his own little songs.  It is so sweet to hear.  When Nathan comes homes, Isaac will be restricted on his activities and where he can go.  This will present a huge challenge to my enegertic son.  We have a new room for him at my moms house.  We decorated it in Disney Cars, he is really enjoying it.  The room is pretty large, and he loves to just run in it.


On the inside . . . .I'm kind of numb to everything right now.  I really don't feel a whole lot of emotions . . . . good or bad.  Even when I found out I had to stay in the hospital, or have surgery, I didnt really feel anything. I do get overwhelmed when I go home and see how much there is to do.  I am starting to get sad as I have to say goodbye to my nurses one by one. 


Pray for details with my job and our finances.  Please also pray for the Lord to strengthen our marriage, and for Shawn and I to selflessly love one another.  Please pray that Nathan will eat, and for continued healing.  It has been a challenging journey, and there will be many more challenges to come.  As the Lord promised us, we will see victory,


For the LORD your God is the one who goes with you to fight for you against your enemies to give you victory.”
Deuteronomy 20:4