Monthly Archives: May 2013

Battle of the Bottles

We are still working on eating. So far, David eats well during the day, but not so much during the night. The nurse put a feeding tube through his nose today so they could make sure he was getting enough calories. We feed him like normal, and whatever is left over, is fed to him through the tube. We were hoping not to add any more accessories to David’s face, but we have to remind ourselves that the goal is for David to get what he needs. While we do not like the way it looks, the tube functions as a mercy from God. Without it, he would not progress.  David is currently up to eating 65 cc’s which amounts to a little over 2 ounces (I think). We appreciate your continued prayers.

 

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A Woman Who Lives Up to Her Name

 

****I have to make a disclaimer. I hope you do not think I am getting off topic or rambling as I write about things other than David. The purpose of this blog, from the beginning, was to share with you the light that God is giving us through the life of our little Sunshine (as well as give you medical updates).

Abigail, which is Hebrew in origin, means “fountain of joy”. I have to take the time to tell you that my wife must be who God had in mind, when he decided to bring this name into existence. All who know Abi will agree, for all of you who do not; I hope you are blessed to meet her someday. The Abigail in 1 Samuel 25, is referred to as a woman with great discernment and of a beautiful countenance. When it comes to my wife, I couldn’t have summed her up any better. Let me take a few minutes and tell you about the woman that my children will “rise up and call blessed”.

From the time we were married, I have referred to Abi as my Proverbs 31 woman; and from the time we were married, she has rolled her eyes at me every time I have given her this compliment :). In all seriousness, I have never used this reference as a joke; she meets every qualification that is needed to bear the title. She is a selfless, industrious, kind and godly woman. She is the perfect wife for me, my companion and my dream girl.

Abi is the most gentle and tender spirited person I have ever met. She has a soft spot in her heart for just about everything. While she will tell you that she is a worrier, most of her worrying is sincere concern about other people. Abi is not a blabber mouth, but when she speaks, it is thoughtful and caring. She is one of the hardest working women I have ever known. She is such a hard worker, that I began calling her “little Claudie” a long time ago. This is in reference to her dad, Claude Ewing who is 83, and can out work most 30 year old men.

Abi is a mommy among moms. She is gentle and patient, yet firm with expectations. Lily adores her mother, and loves to stay right under her wing. I have no doubt, that David will receive more benefit from Abigail’s care than he ever will from mine. I tend to have a “no big deal”, “go with the flow” type of attitude. Abi, however, gets things done. While there are expected limitations with children who have Down syndrome, I will not be surprised to find out that David is on the high end of the functioning scale in 20 years. This is because he has a mother who will address every need and every issue, while his daddy will be tempted to say “don’t worry about it”.

Abi and I have been married 10 years. The tenderness and compassion that I have observed during that time, has deepened my understanding of the heart of God. While God is infinity superior to any human quality, I know a little more of what it means for a person to be touched with the feelings of another’s infirmities (Hebrews 4:12). I have seen 1 Corinthians 13, Paul’s great chapter on love, with a clearer view as Abi has lived it out in real life. I have watched a mother, exhaust every ounce of energy she could, to care for a child that needed her help. I am blessed to have a wife who puts my good above my ego. It is rare to find a person who can bless you with correction; I’m married to one. I have never had a reason to doubt that Abi and were on the same team.

I guess, based on the last statement, the final comment I will make, is that Abi and I make a good team. There is no one else I would want to spend 19 days with in Lebonheur. There is no one else I would want to spend my life with on earth.

– Louis

*** David is continuing to improve in his feedings. We are hoping to come home soon.

Day 18

If you can settle into a routine at a hospital we’ve done it. It’s hard to believe this is our 18th day at Lebonheur. Our days revolve around David’s feeding schedule. Each feeding turns into a cheering session where we become excited over each cc that is consumed. When David began eating four days ago he started with 5cc. We are now up to 45cc. There are a number of factors that contribute to our excitement over each milestone that David reaches. Children who have Hirschsprung’s Disease and require surgery often have issues with digesting food. Thankfully, David has had NO issues. When you have a child you don’t think about having to teach them to suck, swallow, breathe; but David was 14 days old before he ate so it took time and practice  to acquire the coordination needed to finish is feedings. David’s heart defect is also a factor. He tires easily, and finishing a bottle is hard work for him. We look forward to getting his heart fixed, but in the mean time we are cheering for our little boy as we watch him learn to eat.

I’ve been afraid of the answer, but today I asked Dr. Ferguson when he thought we might be able to go home. He told me that once David reaches 60cc per feeding we can talk about going home.

David has graduated to “big” boy bed. It makes things seem a little more normal.

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Lily is here with us for the week. Louis and I are both excited to have our family together.

Please cheer with us and pray for David’s feedings.

~Abigail

Faith in God

We have received many notes of encouragement over the past two weeks that have helped us get through the days. One statement that has occurred time and time again is something to the effect of ” we are amazed or encouraged by your faith”. While we appreciate the support and the fact that God is using our lives to bless others, I have to reply in a way that shifts the amazement to the object of our faith. Abigail and I both recognize that it is God “that makes one differ from another” (1Cor. 4:7).

There are many people who exercise much stronger faith than we ever will, but find that the object of their faith cannot deliver the substance they are hoping to receive. The amazing thing about the Christian faith, is that the object of our faith transcends substance and circumstance. Rather than delivering us from our trials, he delivers us through our trials. God is faithful; the truth of this simple statement merits that those who believe in Christ exercise faith. This is not blind faith, but informed faith, that lives in response to the reality of a God who has revealed Himself through His Word.

Our faith is not placed in the old adage that “everything will work out”. Everything may not work out according to our preference; and if it doesn’t, God is still faithful. Faithful to lead us, faithful to give us the strength to make it through the events that have been ordained for our lives. He is faithful to His purpose: conforming us into the image of Christ. He is faithful to remind us that we are not God, although it is easy to slip into the mindset that we are running the show.

It is the faithfulness of God, that lays the foundation for our thankfulness. Since He is faithful, we can say: “Thank you for Hirschsprung’s disease, thank you for Atrioventricular Canal heart defect, thank you for down syndrome. You are redeeming these obstacles as windows in which we can look through to see yet another dimension of your glory and faithfulness.” Because of the work of Christ on the cross, and the fact that we have been brought into a loving relationship with a faithful Father, we have faith.

Faith is not a spiritual shopping cart God gives us in order to fill our lives with self centered wants. Faith is the human will made pliable to the will of another, so that we can be content not with our wants, but with the person of Jesus Christ. Do not be amazed by our faith, rather stand in awe of our God.

– Louis

*** David continues to make improvements with his eating. At this point we are ready to go home as soon as he begins eating the appropriate amount and gaining the appropriate weight for his age. He had his first bath with water (rather than wipes) this morning (see pictures below) and seemed to enjoy it. We love you all, and hope you have a good Lord’s Day. You will have to excuse the preachy tone of my post this morning, I’m a preacher who hasn’t preached in two weeks :)

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