Friday, April 25, 2008
Tuesday in the hospital we were running through a LARGE number of videos including a bonanza of Sesame Street songs...(you know you want to sing "sunny days, sweeping the clouds away..."). Quinn was snacking on some french fries (because when you have CF you get to eat food high in fat and high in calories) while watching a little montage by Oscar the Grouch. Frankly, Oscar is one of the most authentic characters I can think of--he loves trash and he isn't afraid to let you know about it.
This magic moment of Quinn watching (and singing with) Oscar is brought to you by the letter "O" and the number 4. And with a measure of laughter to boot!
Quinn ran tonight. He hasn't run through the house since Sunday but tonight he did some running which was great to see! His body is continuing to heal--he is still skiddish about us cleaning and touching the tube area but we are doing our best to navigate with him. He is also being incredibly patient with us. Last night it took us two hours to get all of this "stuff" figured out. Tonight it took us an hour and a half (with a twenty minute break for Ryan to kill a HUGE spider in Quinn's closet. Seriously, he was incredibly crafty in how he did it--truly!). We even spilled water on Quinn tonight in bed and he didn't even bat those incredibly long eyelashes of his!
He has asked me to sit in the rocking chair in his room these last couple of nights as he goes to sleep. I sang him a few songs...
"Oh Lord, you're beautiful,
Your face is all I seek.
And when your eyes
are on this child,
your grace abounds to me."
As I got up to say good night to him, he sang,
"...eeeeeeeeeeyes on this child...graaaaaaace...."
May the Lord pour out his grace on Quinn. Amen.
Wednesday, April 23, 2008
Just a quick update tonight about Quinn!
We are home from the hospital as of 2PM today and are all so thankful to be back home. Tonight, Quinn is sleeping well in his own crib with a IV stand holding a bag of formula which is slowly finding its way into his tummy. His body is taking the new addition well and has tolerated the feeds the last two nights so we are praying that response continues tonight too.
Ryan and I got everything set up, attached, filled and turned on so formula is flowing. Quinn is pretty sore right now. The surgeon likened it to getting a piercing--the g-tube (called a "mic-key") is able to spin around like you would an earring. And for anyone who has a piercing, you know it is pretty sore when you twist it at first! As it heals and the skin toughens up, it won't be painful but for the time being we are keeping the Tylenol close at hand.
Like the pictures above display, Quinn is getting better and feeling more like himself. He is asking new questions and was eager to be home to play with his cars and Handy Manny tools. He is protecting his tummy in how he moves and climbs and we are looking forward to seeing him feel 100% physically.
I will confess that this process brings up serious anxiousness for me. In different walks down corridors, conversations with medical staff, watching other kids in the pediatric wing...my head and my heart are full of questions and observations. Maybe feeling a bit raw...it is strange to walk by Quinn's room and see the IV and cords there...again, we are discovering a "new normal" and that process takes time.
Sunday, April 20, 2008
Tomorrow morning we head to OHSU for an early morning in surgery for Quinn. After two postponed dates, Quinn is well, insurance info is set, and we are as ready as we can be for this new step for Quinn. This surgery will place a feeding tube in Quinn's left abdomen which we will use to provide night feeds to him while he sleeps. We've had a number of different conversations with a variety of health care professionals and parents and feel like this is the best decision at this time. Quinn needs about 1800 calories a day--which is a lot but not abnormal for kids with CF. While Quinn's interest in eating has improved, he is still not taking in the kind of nutrients he needs so this will be a major help to him. We should be able to observe significant gains in about four months.
This surgery will be Quinn's third so we have been through some of this before though this time we will be able to stay in Quinn's room with him and be more active in his day to day care. If everything goes as planned we should be home on Wednesday. I won't be checking emails or the blog until after we get home.
If you would pray for Quinn's body to accept this new addition, for his body to accept the night time feed, for his body to heal well without infection or impact on his reflux, and for Ryan and me to be equipped and asking to good questions we would greatly appreciate it.
I do have to share a conversation I had with Quinn last week. I was telling Quinn that he was going to get a feeding tube and that it would be like a second bellybutton. He said, "Oh a feeding tube!" I agreed that it was feeding tube. We talked a little bit about where it would be on his stomach. I told Quinn that he had cystic fibrosis--I said, "Quinn, can you say cystic fibrosis?" He gave me his version which was pretty close. Then, he looked at me and said,
"Mama. I'm broken."
"What did you say?!"
"Mama. I'm broken."
So I said,
"Quinn, we're all broken. That is why we need Jesus. He came to help us because we are broken."
I was surprised, sad, stunned...did he really say he was broken? We don't talk about CF like that or about going to the hospital to get fixed. I'm still not sure where he got that but I am vividly reminded that while I am physically whole I am spiritually broken and in need of a Savior. While He feels distant from me, I still need the Cross and the Resurrection of Jesus Christ, the Messiah.
So Quinn and I are waiting together, recognizing our brokeness, and saying "Maranatha, Lord"!
Monday, April 7, 2008
Quinn drinking his "coffee" at StarbucksIt has been a full couple of weeks and I've thought on multiple occasions "I need to blog!" And yet my fingers have not touched the keyboard! :) I thought I would write a very quick post this morning and it might spur me on to actually blog about the things I mention.
Quinn's 2nd birthday!
Organizing files and paper work (taxes have been submitted!)
The 10-speed I used to have
Continued research and thinking about surgery for Quinn plus other options
How do you arrange this space (FreeStyle!)?
The latest installment of how Quinn surprises me
When will the sunshine come to stay?