The Joy of the Lord be our strength…

As you might guess, we have been experiencing a fullness of life in our home in the last 3 months. God has been so faithful to us and am so thankful for His ever present help and friendship. We have been blessed to have several ladies coming every week to help charlie with Speech Therapy and Physical Therapy. They are wonderful and are blessings to our little man.

Charlie seems to mold right into our schedule as we started school up again, though he keeps us on our toes ūüôā¬†Opportunity 101 for die-ing to our self and completely surrendering to Christ is always present, and so good. ¬†I will admit that tubes, needles, gauze, syringes, meds and the like are not my cup of tea when it comes to a baby.¬†But I have to choose daily to lay down my self desires and serve Charlie…and he does make it a joy!¬†img_6305

We have had a couple warm days, but with the start of fall came the chilly mornings, vibrant colors, Golden sunsets and of course … warm apple cider, chai tea, soups and pumpkins.¬†We were so blessed to take drive on a ¬†Sunday afternoon up to Dillon in the mountains. The Colors and scenery were breathtaking! We Walked around Dillon lake with Charlie in the Jogger. ¬†The little ones loved throwing showers of golden leaves in the air, surveying the grandeur of the lake, and taking in the¬†mountain air.

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Charlie has been growing every day. He is making little bits of progress at a time. As he grows he is becoming a little more adventurous and energetic. We are feeding him solids during meals as often as we can. It is a process stimulating and training his mouth to chew and especially swallow the baby food he is getting. Sometimes it just feels like we are feeding a waterfall (food runs out of his mouth ūüôā but with continual persistence and perseverance we can get somewhere…He is getting better at it ūüėȬ†He also seems pretty close to sitting up on his own which will be very exciting for him. He is finding a little more stability in ¬†holding his head and back up…he sure is working all his muscles.

 

Charlie loves to laugh, which is not hard to accomplish ūüėÄ Though we can’t here him due to the trach, we can tell. These wonderful moments with him make all of the hard work so worth it. He is a gem and will be for the rest of his life I know.

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Charlie loves a good cuddle, which I hope never goes away! I have found a way to sneak him into bed with me on nights I stay with him (THE BEST!)img_2227

Guys…this math/biology tutor is amazing!

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These two cuties are helping prepare some soups for the hunting trip that a few of our family members are about to embark on. (Naomi was a little cautious about sauteing onions.)

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We are so thankful for all of you who have prayed, and served our family through the past year! Mom and I were just looking back at all of the love that was poured out by family friends, anonymous people, and the body of Christ in parts around the world, and we awe. God was so good and we are so thankful for the body of Christ. I hope that Charlie will one day get to meet you!

We would appreciate continued prayers for:

-Weaning “TPN” feeds and moving to %100 solids

-Continued strength and growth for Charlie

-Continued healing of digestion (we have improved a little bit)

-And that the joy of the Lord would be our daily strength

May the Lord bless you this fall!

Love, Savannah

HIS Goodness and Mercy

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I will remain confident of this: I will see the goodness of the Lord… Wait for the Lord; Be strong and take Heart!

Ps. 27:13-14

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Wow! In some ways it seems like years since we began this journey, but in other ways, only a blur. To think that our little man is finally home and¬†the long hospital stay is finally over…..the only words that can come in explanation are, “Wow, that was totally the Lord!…He sustained and kept us. HE was so good, gracious and merciful to us during that time.”

The funny thing is, though we may talk about this journey¬†in a past tense, we are still on it. ¬†At the end of every hard hike usually comes a gratification by the AWEsome views. Even so, we have only just climbed a “high peak” in our walk and are now experiencing a¬†breathtaking reward…well worth the hike might I add ūüėČ ¬†The Lord continues to sanctify and work in us, even with Charlie home…which is wonderful! We are still on the same journey, but the Lord has and continues to answer many prayers on Charlie’s behalf.

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Now that we are all back together again, there is a new business and atmosphere in our home. One filled with ¬†more Joy, Peace, Diligence, Dependence on the Lord, quality family/sibling time and much more. Not to say these things were lacking before, but they have been tried and tested and purified to a new level… “And I am certain that God, who began the good work within [us], will continue his work until it is finally finished on the day when Christ Jesus returns.” Phil 1:6

Charlie is developing mental and physical skills rapidly (taking a strong major in the cuteness arena). He loves to roll over and hold his head up; He reaches for us when we go to pick him up; He enjoys discovering new toys, textures, and scenery; He can support his own neck and back very well. There is nothing quite like sleeping with this little guy in your arms…he is so precious.

As we settle Charlie in and return to life as a family once again, we are putting our focus to the start of another exciting school year (I am sure many of you relate)…while still soaking up the last few weeks¬†of the warm summer outdoors. ūüôā ¬†

More to come… Savannah Dale

 

Take my will and make it THINE

 

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Take my life and let it be
Consecrated, Lord, to Thee.
Take my moments and my days,
Let them flow in endless praise.
Take my hands and let them move
At the impulse of Thy love.
Take my feet and let them be
Swift and beautiful for Thee.
Take my voice and let me sing,
Always, only for my King.
Take my lips and let them be
Filled with messages from Thee.
Take my silver and my gold,
Not a mite would I withhold.
Take my intellect and use
Every pow’r as Thou shalt choose.
Take my will and make it Thine,
It shall be no longer mine.
Take my heart, it is Thine own,
It shall be Thy royal throne.
Take my love, my Lord, I pour
At Thy feet its treasure store.
Take myself and I will be
Ever, only, all for Thee.

We knew it would happen. ¬†We didn’t want it to happen. ¬†We were enjoying having Charlie at home. ¬†We were getting used to being together. ¬†Sunday morning Charlie was not acting himself, his nose was running, and he was requiring quite a bit of oxygen. ¬†After trying many things and troubleshooting our home equipment, we determined it would be in Charlie’s best interest to have him checked out. ¬†Once in the ER he developed a fever and that put us on the 5 alarm plan for any baby with a central line and a fever. ¬†Lot’s of blood draws, lots of cultures of every fluid in his body, and the start up of antibiotics. ¬†They decided to keep us in the PICU overnight and then moved us upstairs for the transition home. ¬†Charlie returned to his baseline on Sunday evening, but they like to watch him until his cultures come back. ¬†Thankfully all was negative and he was likely just dealing with a virus that the viral panel didn’t display.

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Though my strength was feeble, my mama’s heart was feeling like it was being run through a paper shredder from having to leave my sweeties at home, and the temptation for discouragement was very real- I kept singing the words to the song above and focusing on WHO I was walking this path for. ¬†How quickly my mind would stray. ¬†“Deb, you can do this for Jesus!” ¬†I would say. ¬†“Yes! ¬†I would die for Jesus- this is easy!” ¬†Later my heart would grow sad picturing Isaac’s eyes when he learned we were headed back to the hospital. ¬†“This is for your King! He will take care of Isaac. Deb, you cannot save Isaac. ¬†You cannot save your children. ¬†God can take much better care of them than you can!” ¬†By the end of the day I was exhausted and weary. ¬†When the nurse informed me that my daughter (my buddy, encourager, and helper) wasn’t old enough to stay with me…I melted. ¬†Then the words of my dear sister in the Lord rang loudly in my ears…YOU WERE MADE FOR THIS, DEBBIE! ¬†“OK Lord, there is a reason that we are back here, that I am being forced to stay here alone, and find peace and rest in YOU alone, while laying the things that are most precious to me- at your feet. ¬†Yes LORD, I will do this for you. ¬†Again. ¬†And Again. ¬†And again. I delight to do this for you. ¬†I will choose to exalt in this tribulation. ¬†For your sake- it is an honor.” ¬†I ran out of my own strength many months ago. ¬†When I go back to trusting in my own strength my faithful Father quickly reminds me that it is only His strength that will see us through this.

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THANK YOU TO ALL OF YOU FAITHFUL PRAYER WARRIORS. ¬†OUR MAIN PRAYER REQUEST REMAINS FOR CHARLIE’S SMALL INTESTINE TO FUNCTION PROPERLY. ¬†THIS WOULD ALLOW FOR A CASCADE OF SIMIPLIFICATION FOR CHARLIE’S MEDICAL NEEDS. ¬†PRAY FOR HIS HEMOGLOBIN TO INCREASE. ¬†PRAY FOR THE SURGERY TOMORROW TO REPLACE HIS CENTRAL LINE WOULD BE SUCCESSFUL. ¬†PRAY FOR CHARLIE’S LIFE TO BRING GREAT GLORY TO GOD!

HOSANNA

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Little Enid (life, soul) Hosanna (praise, adoration to the Father, joy) displays our feelings about having Charlie home with his family again!  Oh to be all together again is an overwhelming joy.  We praise God for His faithfulness to us in this journey.

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Daddy and Enid were practicing trach care on the dolly the hospital gave to us.  Daddy is AMAZING.  God has given daddy, Bob, such a strength, a fight, and tremendous faith that has challenged and encouraged me along this path.  He adores his little Charlie boy and embraces the challenges we face as his parents.

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Charlie lacks no love or care at home. ¬†This was a picture taken just after Savannah had bathed him. ¬†He promptly snuggled up in her arms and took a good nap in his lion blanket. ¬†Savannah said that her favorite part of Charlie’s care is bathing him and dressing him.

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Personally, I LOVE being in my home with all my sweeties together.  Life is full and we are developing a new normal, but we are grateful to be together again.image

Enid and grandma are enjoying some of God’s creation by smelling the bright purple flowers that are in bloom. ¬†This was at a deaf dog show that was performed with the intent of encouraging people to look at people with disabilities through a lens of seeing what they CAN do and not what they cannot do. ¬†It was very sweet and encouraging in the context of our little Charlie boy. ¬†God has great purpose and intention with Charlie’s life. ¬†This journey has been hard, stretching, faith-building, and taken us way beyond what we ever thought was even possible in our lives…it will be a joy to continually mine the treasures out of this journey.

Genesis 50:20   You intended to harm me, but God intended it for good to accomplish what is now being done, the saving of many lives.

Since coming home, we have landed back at Children’s. ¬†Thankfully just for a short stay…more in next post.

It’s True…

Yes, everyone it is true, our Lion-Hearted Charlie is home!!  (Asleep in my arms) Thank you LORD!   What a privilege and a joy to be able finally to care for our little warrior AT HOME!

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Lamentations 3:22-23.                                                                                                                         22 The steadfast love of the Lord never ceases;
his mercies never come to an end;
23 they are new every morning;
great is your faithfulness.

Charlie did very well with the transition, and he was all smiles before he decided to take a nap. ¬† Grandma is staying with him tonight while we all rest up for tomorrow when we’ll start figuring¬†out our “new normal”.

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Thank you all for your prayers.  The battle is not over, but we just took a BIG step forward!

Sarah

P.S. More pictures to come!

Day 327 and a HOME RUN!

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Charlies blood cultures are negative! ¬†Which means our boy can come HOME tomorrow! ¬†Praise God! ¬†It will be a big day but Charlie’s home nurses are ready! ¬† (And so is his family)

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Psalm 28:6

” Praise be to the LORD, for he has heard my cry for mercy. ”

 

Love, Sarah for the Fines

 

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DAY 325: A big nap

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Charlie is resting peacefully today.  His O.R. Trip was a great success and we were able to remove his compromised central line easily, place a PICC line, and take a peek at his intestines.  The doctors were pleased with what they saw in his intestines.  They took a small biopsy to see if they could find any more answers for his diarrhea, which will come back in about a week.  Everything else looked well and they saw great indications of healing that has already taken place.  We are targeting to leave here Monday as long as his blood cultures remain negative through Sunday night.

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I was turned towards praise as I walked past this beautiful flower garden yesterday. ¬†Praise for the beautiful flowers but more so with the flooding memories of this being my favorite spot 11 months ago when we first got here. ¬†11 months…my how fast and yet slow time has moved. ¬†The praise was an eruption of gratitude to the Lord for sustaining us on this journey. ¬†He has been immeasurably faithful and merciful to a mother that needed immeasurable doses of both -that could only have come from HIM. ¬†There were several points at which we were given the option to quit or in my weakness I was tempted to quit. ¬†He gave us the strength to press on, and press on, and press on. ¬†I don’t know all the treasures that this trial has and will produce, but we look into Charlie’s eyes and we are all ¬†sure that God wanted us to press on through all of those hard times. ¬†I am not sure what all the pedestrians were thinking as I sang to the Lord out loud on the sidewalk- He is worthy of our praise no matter where we are or what we are doing. ¬†Don’t be shy, don’t hold back, this world needs to know the greatness of the One and True Living God!

But one thing I do: Forgetting what is behind and straining toward what is ahead, I press on toward the goal to win the prize of God’s heavenly calling in Christ Jesus.  Phil. 3:13-14

PLEASE PRAY FOR:  NO INFECTION; NEGATIVE BLOOD CULTURES; HEALING FOR SMALL INTESTINE; SMOOTH TRANSITION HOME

DAY 324 – Prayer Request

Charlie is bright eyed and playful this morning. ¬†He loves mornings! ¬†He is so strong and rolling all over the place to get to his toys. ¬†He loves to grab his toys and put them in his mouth. ¬†No teeth yet, but they are knockin’. ¬†The decision was made to take out Charlie’s Broviac central line in the OR and place a new PICC line until we can place a new Broviac central line in about 10 days. ¬†His line seemed to be holding onto some bacteria and had already been repaired twice. ¬†We felt it was too compromised to go home with as his nutrition depends on it. ¬†If the blood cultures they draw after the placement are negative at 48 hours (Sunday evening) then we can go home on Monday.

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PLEASE PRAY FOR:  SUCCESSFUL PROCEDURE; NO SIDE EFFECTS FROM ANESTHESIA;  NEGATIVE CULTURE RESULTS FOR INFECTION POST-OP; PROTECTION FOR CHARLIE; MONDAY HOME!

Lamentations 3:22-23 The steadfast love of the LORD never ceases; his mercies never come to an end; they are new every morning; great is your faithfulness.

DELAYED…Blessed be the name of the LORD!

Well…as I was driving all of the contents of Charlie’s room home I got a call that a very rare occurrence had happened. ¬†Charlie’s blood cultures turned up positive after the 48 hour mark- which is very unusual. ¬†Now the doctors are deciding if we need to surgically remove and replace his central line to clear the infection safely.

Needless to say, we are all feeling a little sad.  We were so excited and longing to have Charlie home.  Well, we are thanking the Lord for yet another extended opportunity to exercise patience and develop our faith and trust on yet a deeper level.  Blessed be the name of the LORD- when He gives and when He takes away.  He is GOOD.

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