Well, what a difference a month makes! I see from my last post that Joseph was not allowed to eat. That was supposed to last 6 days, but as it turned out, he needed another dilation on day 4. The good news is that it worked very well. Ever since, he's been able to eat just about whatever he wants ... which is saying a lot! He definitely favors meat: chicken, sausage, hotdogs ... In fact, he'd rather have more meat than dessert. We've begun introducing fruits and veggies, too. So far, he only likes carrots, but it's a start. Fruits have been accepted better, I think, because they're sweet. Bananas are his favorite. He just had a follow-up dr. visit and he's gained 4 pounds since his surgery (only 7 weeks ago)! His last esophagram looked very good, so at this point, he doesn't need any more surgeries or procedures. If he begins to have trouble swallowing, he'll have to be assessed at that time to see if he needs another dilation. At this point, though, he's done. My praise to God seems inadequate for all that He's done in Joseph's life in such a short time. Wow! Awesome!

Joseph's birthday was on July 4th, and he turned 6. We celebrated a little early since we were visiting with my family in June. He truly enjoyed his birthday cake and receiving presents. He's already planning his cake for next year!

The only ongoing thing for Joseph now is that he coughs - and even chokes -a lot at night. The best we can figure out is that he has trouble swallowing his saliva when he's in that deep, REM sleep. Hopefully, his throat muscles will learn how to work during the day so that he can do it subconsciously at night. Meanwhile, we were all feeling the effects of not sleeping well for weeks, so we put him on a medication (Rubinol) to "dry him up" at night. Hopefully, this will only be needed as a short-term solution, but so far it's working and we're really enjoying getting better sleep! There are so many ways in which our bodies are designed to work that we just take for granted.

Meanwhile, the rest of us are enjoying our summer --especially now that doctor visits have tapered off. Kelly is rehearsing several times a week for an August production of Pride and Prejudice. The rest of us are taking it easy and trying not to think about how quickly the new school year is approaching.

God's blessings to you,
Jill

Wednesday, June 10

Joseph has had a little setback. The site where he had the infection has been seeping and he's been running a temp, so he went back to the doc yesterday (Tuesday). Although it didn't show up on the esophagram, there must be a leak at the neck anamostosis, so we're waiting for it to heal. Joseph has a follow-up next Monday, but cannot eat or drink anything by mouth (medical term: NPO) until then. He was sad at first, but is taking it surprisingly well. Ironically, we had planned on Tuesday to take Joseph for his first trip to Mrs. Curl's ice cream shop. That's okay, we'll just do it another time, hopefully next week. Actually, I'm looking forward to NOT going to Riley until next week. That will be the longest respite since his surgery.

I know all of this will seem like a short time about a year from now, but it's been a stressful month. I keep reminding myself that I can do all things through Christ who gives me strength. It's such a bonus that God has given us a deep abiding love for Joseph and the desire to do what's best for him.

Blessings to you and your families this week,
Jill

Friday, June 5

Well, Joseph and I (Jill) spent the entire day at Riley. Last night, I noticed that Joseph's neck scar was bulging. Thankfully, we were at a friend's house who resourcefully had the number for Riley. I talked with the dr. on call, but decided to wait until morning so we could see Joseph's surgeon. Before we headed for home, Joseph spiked a fever of 104.2. I thought we might need to go to the ER, but Ibuprofen brought the fever down pretty quickly.



On Friday, we did see Dr. Rouse - the surgeon who repaired Joseph's esophagus. (BTW, we have been so pleased with his demeanor, explanations and expertise.) He said that Joseph did have an infection that would need to be drained (meaning: day surgery). The good news was that Joseph had a dilation scheduled for next Tuesday, but they could do both of these procedures at once. It was a long day, but at least we didn't have to spend the night at the hospital! Most likely, Joseph has a microscopic leak at that site, which will heal in time. He did have another esophagram done, but the leak cannot be seen. That's probably good news in that it will not take long to heal.


About the dilation ... the place where Joseph's existing esophagus was stitched to the new part (anamostosis) scars when it heals and closes off his esophagus a little bit. We're talking millimeters, here. The dilation kind of breaks the scar tissue apart so it can continue to heal with a wider circumference. He'll most likely need a few more dilations as he goes through the healing process. This is outpatient surgery and he needs to be under a general anesthetic. Just another reason we're thankful to live so close to Riley. Another reason is that several of the doctors recognized us in the surgery waiting room and stopped by to say "hello." They've been very personable and have treated Joseph very well. Too bad he gets anxious at the hospital and won't talk to them :)

Enough medical info and on to the best news! When I was putting Joseph to bed that night, he asked for his favorite Bible story: David and Goliath. Afterwards, he said, "Goliath doesn't believe in God." I agreed and asked him if he believed in God. He said, "yes." I felt the Holy Spirit prompting me to follow up on that, so I asked him if he had ever asked Jesus into his heart or if he knew what that meant. He said, "no." So I explained things, checking with him along the way to make sure he understood: Jesus is God's son; all of us do bad things sometimes (sin); Jesus died on the cross to take the punishment for our sins; He rose again; if we are sorry and ask Jesus to forgive our sins, He will; if we ask Jesus to be the Lord of our life, the Holy Spirit will come into our hearts to help us obey Him. I asked Joseph if he wanted to do this, and he said, "yes!" (This was especially significant because I've asked him before and he's said, "no.") So we prayed together and Joseph asked Jesus to come into his heart and he became a child of God! His salvation is sure, but we know that he will continue to grow in his understanding and commitment of this momentous decision. It almost seems too simple, but Jesus says, "Let the little children come unto Me" and that we must have faith like a little child. We will acknowledge Joseph's childlike faith and encourage him and pray with him to grow in the knowledge of our Lord Jesus Christ. Please rejoice with us!

~Jill

Going home! - Thursday

Joseph is eating scrambled eggs and pancakes for breakfast, with lots of water. So far, he seems to understand the need for small bites and lubrication to wash it down. So ... he's watching "Cars" on DVD and having breakfast in bed. What a treat!

We're waiting on getting his g-tube changed to a Mic-Key button and then we're scheduled to go home. Of course, that could take all day, but I don't care as long as we don't have to spend another night here. We've been pleased with all the care Joseph's received, but it will be good to all be home together. All in all, I know this has been a relatively short stint. We count the surgery and speedy recovery a blessing from the Great Physician.

Love,
Jill

More good news! Joseph is still doing well and eating up a storm! This morning he had a vanilla milkshake, chicken broth and grape juice and had even moved up to oatmeal by the afternoon! It's hard to believe this day is finally here. I know that in the big picture, the time has been short (we've only had him home 5 months), but it's been close to 3 years since his CI accident. I'm telling everyone who comes in the room: He can swallow! His fever has also been down, but they want to keep him another day or 2 to make sure everything is working properly. Mom says his stubborness is really starting to kick in now.... he's definitely feeling better :) God-willing he'll be able to come home tomorrow or Friday. His recovery process, though it has seemed pretty long to me, has actually been quite an amazing one, with relatively few complications. I know this is because God has allowed your righteous prayers to be powerful and effective, and I humbled..... so thank you!


~Kelly

Great news!

WAHOO!!! We have seen and experienced the hand of God! Joseph had his swallow study done today and there were NO leaks! The Great Physician has heard and answered your many prayers for a speedy recovery. God gets all the praise!

I heard "I Love You More" from Matthew West both before and after Joseph's test today. Coincidence? Absolutely not! God loves Joseph more than we can imagine. That would be true even if there was leakage, but it's a true blessing that there was not. God has turned his life around.

Joseph is allowed to drink liquids tonight and can go home when he's been fever-free for 24 hours. Thank you, thank you for all your love, prayers and support.

~Jill

Matthew West - More Lyrics

Take a look at the mountains
Stretching a mile high
Take a look at the ocean
Far as your eye can see
And think of Me

Take a look at the desert
Do you feel like a grain of sand?
I am with you wherever
Where you go is where I am
And I'm always thinking of you

Take a look around you
I'm spelling it out one by one

(Chorus)
I love you more than the sun
And the stars that I taught how to shine
You are mine, and you shine for me too
I love you yesterday and today
And tomorrow, I'll say it again and again
I love you more

Just a face in the city
Just a tear on a crowded street
But you are one in a million
And you belong to Me
And I want you to know
That I'm not letting go
Even when you come undone

And I see you
And I made you
And I love you more than you can imagine
More than you can fathom
I love you more than the sun
And you shine for me

It's Monday now and it sure is quiet at the hospital on a holiday. Joseph is doing well. He's been running a fever, but everything else looks good. He's still on schedule to have the swallow study done tomorrow. God's blessings to all of you this Memorial Day!
~Jill