So the little man weighed in at 10lb 15oz yesterday. He has lost weight since his surgery, but we were not surprised because he has not been eatting as much as before surgery. However, he has been eatting better these last few days and his breathing is much less labored!
Although it was Josiah's appointment, Dr. Newlin gave Mary a great diagnosis while we were there. "Diarrhea of the vocal cords". She doesn't stop talking until the last minute before she falls asleep, then she is at it again as soon as she wakes!
Saturday, February 20, 2010
Wednesday, February 17, 2010
Josiah
Here is a recent photo of Josiah. This photo was taken to commemerate his first official diaper blow-out! :) Yes, I am in good spirits and having fun posting pictures today. I've had a little more sleep and a lot of encouragement and perspective recently. :)
Little Olympian
We were watching the olympic downhill skiing one night. Mary: "Where can we get a mountain?" Here is a photo of our little ski bunny.
Four Generations
Here is a four generation photo with my mom and grandma. Grandma just started treatment for ovarian cancer on Monday.
Monday, February 15, 2010
Josiah about 1 week post surgery
Josiah has not been eatting well the last few days. I am pretty sure he has a cold which must make it more difficult. His medicine for acid reflux was altered to be more aggressive and he seems to be responding better to that. We now give it to him 20-30 minutes before eatting three times a day. That can be rough when he wakes up hungry, but it makes a huge difference. We are excited that his breathing is much less labored, but he still needs to eat laying sideways or tummy down. He is scheduled to follow up with the GI and ENT doctors toward the end of March. If they give the go ahead, he will have his hip procedure done the next week. Thanks to everyone who has been praying for him!
Sunday, February 14, 2010
Clarise gets baptized!
My dear friend Clarise chose to trust Jesus as her Lord and Savior one year, five months, and two days ago. Today she was baptized as a public demonstration of her committment. It has been so awesome to watch her grow in her knowledge of and love for Christ. Her faith is authentic and it is refreshing to watch her learn what it means to let him sit in the driver's seat in her heart and her life.
Mary and I have been discussing Clarise's decision to be "bapertized". She started by calling it "advertized". I thought this was funny and a bit ironic because it is very much an advertizement of one's committment of faith. Mary wanted to know when she could be bapertized. We talked about asking Jesus to come into your heart and be boss of your life. We've had this conversation a number of times before. Right now it seems like Jesus is like one of her imaginary friends, but special because others know about him. Just as with her imaginary friends (Di Di, Luke Louis, Lettuce, and Jacob) she is ok with being able to talk to him, but not see him.
Thursday, February 11, 2010
We're home!
Josiah was dismissed yesterday evening and we arrived in Wichita last night about 11:30.
Tuesday, February 9, 2010
Josiah is recovering
Thank you everyone for thinking of and praying for us. I asked Aaron to write up an update because I am so tired! Here's what he wrote:
Our Special Little Man in Kansas City
I’m typing this next to Josiah’s hospital bed at Children’s Mercy in KC. He’s working his way through a bumpy recovery from throat surgery earlier today. His throat was scoped and they found that his epiglottis has excess tissue on both the forward and back flaps and the airway opening was a little small. Together those things combined to restrict his wind pipe, cause labored breathing and a provide a real challenge to feed while laying on his back. Unfortunately the doctor said he can’t remove the tissue on the forward side of the opening which is the flap that is “flapping” shut voluntarily when he’s on his back. Nonetheless he made an incision to increase the size of the opening and remove extra tissue from the back flap. The doctor estimates a 30% chance this will solve his breathing problems. We’re hopeful he’ll be improved enough that we can proceed with the closed reduction procedure for his hip dysplasia within the next 6 weeks. Currently he only eats well on his side and that isn’t going to work with the cast for his hips.
Through all this today we are still left praising God. He protected Josiah from getting a cold even through his sister is just finishing up a nasty cold/cough, that Sarah is also currently in the midst of, and he could easily have gotten sick. Also, it turned out that he didn't need a breating tube! Right now, doctors are working to figure out how to best manage his acid reflux.
Our Special Little Man in Kansas City
I’m typing this next to Josiah’s hospital bed at Children’s Mercy in KC. He’s working his way through a bumpy recovery from throat surgery earlier today. His throat was scoped and they found that his epiglottis has excess tissue on both the forward and back flaps and the airway opening was a little small. Together those things combined to restrict his wind pipe, cause labored breathing and a provide a real challenge to feed while laying on his back. Unfortunately the doctor said he can’t remove the tissue on the forward side of the opening which is the flap that is “flapping” shut voluntarily when he’s on his back. Nonetheless he made an incision to increase the size of the opening and remove extra tissue from the back flap. The doctor estimates a 30% chance this will solve his breathing problems. We’re hopeful he’ll be improved enough that we can proceed with the closed reduction procedure for his hip dysplasia within the next 6 weeks. Currently he only eats well on his side and that isn’t going to work with the cast for his hips.
Through all this today we are still left praising God. He protected Josiah from getting a cold even through his sister is just finishing up a nasty cold/cough, that Sarah is also currently in the midst of, and he could easily have gotten sick. Also, it turned out that he didn't need a breating tube! Right now, doctors are working to figure out how to best manage his acid reflux.
Saturday, February 6, 2010
Spiders, valentines, and small bananas
Here are some highlights of these last few days...
Mary and I ate spiders and catapillers for lunch one day. We stuck dry pieces of spagetti into pieces of hot dog and cooked them along with some macaroni and cheese. The spagetti looked like wiggly legs sticking out once cooked. We also threw some baby carrots into the boiling water for our catapillars. :)
Yesterday we made a few valentines by poking dum dums through multiple paper hearts. This is only adding fuel to Aaron's conviction that I need to upload pictures with my blog entries! Anyway, they sort of look like flowers with dum dum middles.
The crowning highlight was the almost-close-enough-to-count completion of a life ambition. On a trip once, I ate the most amazing tasting small bananas I've ever had. I decided one of my life goals would be to find another such banana. I've seen and eaten only to be disappointed, up to this week. Monday, I came across some cute little ones at Walmart that said "try me, I'm sweet". Sure enough. They are better than regular bananas, but not quite amazing as the one I remembered.
Mary and I ate spiders and catapillers for lunch one day. We stuck dry pieces of spagetti into pieces of hot dog and cooked them along with some macaroni and cheese. The spagetti looked like wiggly legs sticking out once cooked. We also threw some baby carrots into the boiling water for our catapillars. :)
Yesterday we made a few valentines by poking dum dums through multiple paper hearts. This is only adding fuel to Aaron's conviction that I need to upload pictures with my blog entries! Anyway, they sort of look like flowers with dum dum middles.
The crowning highlight was the almost-close-enough-to-count completion of a life ambition. On a trip once, I ate the most amazing tasting small bananas I've ever had. I decided one of my life goals would be to find another such banana. I've seen and eaten only to be disappointed, up to this week. Monday, I came across some cute little ones at Walmart that said "try me, I'm sweet". Sure enough. They are better than regular bananas, but not quite amazing as the one I remembered.
Thursday, February 4, 2010
So, how's Josiah?
I have not done a good job of keeping others informed of how he is doing and I’m afraid I won’t remember unless I capture his journey all in one place.
Nov. 4th. Josiah was born! We found that he had a sacral dimple and developmental hip dysplasia in one hip. He weighed 6lb 9oz.
Nov. 10th he saw Dr. Pence, an orthopedic surgeon here in Wichita. He recommended that we double or triple diaper him to help keep his hips in place. That turned out to be a convenient practice, because in pinch he always had at least one extra diaper on his person!
Nov. 11th he had an ultrasound done on his sacral dimple. It showed no reason to be concerned. Yippy!
Dec. 3rd. At his 1 month checkup, Josiah weighed 8lb 9oz. Dr. Newlin was pleased with his weight gain at this point. I was concerned that he was much fussier than I thought he should be. He started taking Zantac for acid reflux.
Dec. 14th we took him to see Dr. Olney at Children’s Mercy in KC. He is a pediatric orthopedic surgeon that Dr. Newlin recommended because Dr. Pence was planning to retire in a few months and Josiah would not have to switch doctors during treatment. He was given a Pavlic harness to wear 24/7. It was not as bad as I had expected. It made diapering and bath time more inconvenient, but he was easier to hold and it didn't seem to bother him much.
At some point in December, I was pleased that his nursing time seemed to drop from around 40 minutes to around 20 minutes. At Christmas we noticed his BMs were fewer and farther between. He was still very fussy and always battling gas. We tried everything we could think of as well as some ideas others offered to comfort him.
Dec. 28th He saw Dr. Olney in KC and had his first ultrasound done on his hips. We then learned than both hips were displaced.
Dec. 30th at an early 2 month check up with Dr. Newlin he weighed 7lb 10oz (allowing 8oz for the harness). This indicated he had lost about a pound that month. We were told to start supplementing him with formula. I was instructed to not nurse, but rather pump and keep track of how much he took from a bottle. That was easier said than done. He would not take a bottle and ate pretty much nothing.
Dec. 31st He weighted 7lb 6oz. That day we met with a speech therapist at Wesley that helps babies take bottles. Success! He ate with a Haberman feeder which is just a funny looking bottle.
Jan 4th we started to see his weight turn around. He was 7lb 12oz at Dr. Newlin's. We were thankful that he would take from the Haberman feeder, but it was taking 1-2 hours to feed him. He started taking Prevacid instead of Zantac and that made a noticeable difference managing his acid reflux.
Jan. 10th we were off to KC and Dr. Olney said the harness had not been effective and took it off.
On the 12th, we saw Dr. Newlin and he weighed 8lb 5oz. Also on that day I started taking Josiah to Dr. Scharenberg daily. He is a chiropractor who works pro bono on colicky babies. We saw him all but two days until the 22nd including two of his days off just because he cared so much. He got frustrated with Josiah's breathing issue and insisted we get it addressed.
On the 17th he rolled over from his tummy to back for the first time!
On the 19th he weighed 8lb 15 oz at Dr. Newlin's!
On the 20th we started using Dr. Brown bottles and consistently fed him while he lay in our lap on his belly. We had a breakthrough! Not only did his feedings decrease to less than 30 minutes, but he was far more comfortable afterwards. The 21st was a great day and things have been better since.
On the 27th he weighed 9lb 11oz at Dr. Newlin’s. He was scheduled to have a closed reduction surgery on his hips Feb. 3rd. Dr. Newlin pushed to have an ENT doctor look at him while was going to be up there to see if there might be something blocking his airway. Children’s Mercy was amazing and had things rescheduled and set up the next day!
Nov. 4th. Josiah was born! We found that he had a sacral dimple and developmental hip dysplasia in one hip. He weighed 6lb 9oz.
Nov. 10th he saw Dr. Pence, an orthopedic surgeon here in Wichita. He recommended that we double or triple diaper him to help keep his hips in place. That turned out to be a convenient practice, because in pinch he always had at least one extra diaper on his person!
Nov. 11th he had an ultrasound done on his sacral dimple. It showed no reason to be concerned. Yippy!
Dec. 3rd. At his 1 month checkup, Josiah weighed 8lb 9oz. Dr. Newlin was pleased with his weight gain at this point. I was concerned that he was much fussier than I thought he should be. He started taking Zantac for acid reflux.
Dec. 14th we took him to see Dr. Olney at Children’s Mercy in KC. He is a pediatric orthopedic surgeon that Dr. Newlin recommended because Dr. Pence was planning to retire in a few months and Josiah would not have to switch doctors during treatment. He was given a Pavlic harness to wear 24/7. It was not as bad as I had expected. It made diapering and bath time more inconvenient, but he was easier to hold and it didn't seem to bother him much.
At some point in December, I was pleased that his nursing time seemed to drop from around 40 minutes to around 20 minutes. At Christmas we noticed his BMs were fewer and farther between. He was still very fussy and always battling gas. We tried everything we could think of as well as some ideas others offered to comfort him.
Dec. 28th He saw Dr. Olney in KC and had his first ultrasound done on his hips. We then learned than both hips were displaced.
Dec. 30th at an early 2 month check up with Dr. Newlin he weighed 7lb 10oz (allowing 8oz for the harness). This indicated he had lost about a pound that month. We were told to start supplementing him with formula. I was instructed to not nurse, but rather pump and keep track of how much he took from a bottle. That was easier said than done. He would not take a bottle and ate pretty much nothing.
Dec. 31st He weighted 7lb 6oz. That day we met with a speech therapist at Wesley that helps babies take bottles. Success! He ate with a Haberman feeder which is just a funny looking bottle.
Jan 4th we started to see his weight turn around. He was 7lb 12oz at Dr. Newlin's. We were thankful that he would take from the Haberman feeder, but it was taking 1-2 hours to feed him. He started taking Prevacid instead of Zantac and that made a noticeable difference managing his acid reflux.
Jan. 10th we were off to KC and Dr. Olney said the harness had not been effective and took it off.
On the 12th, we saw Dr. Newlin and he weighed 8lb 5oz. Also on that day I started taking Josiah to Dr. Scharenberg daily. He is a chiropractor who works pro bono on colicky babies. We saw him all but two days until the 22nd including two of his days off just because he cared so much. He got frustrated with Josiah's breathing issue and insisted we get it addressed.
On the 17th he rolled over from his tummy to back for the first time!
On the 19th he weighed 8lb 15 oz at Dr. Newlin's!
On the 20th we started using Dr. Brown bottles and consistently fed him while he lay in our lap on his belly. We had a breakthrough! Not only did his feedings decrease to less than 30 minutes, but he was far more comfortable afterwards. The 21st was a great day and things have been better since.
On the 27th he weighed 9lb 11oz at Dr. Newlin’s. He was scheduled to have a closed reduction surgery on his hips Feb. 3rd. Dr. Newlin pushed to have an ENT doctor look at him while was going to be up there to see if there might be something blocking his airway. Children’s Mercy was amazing and had things rescheduled and set up the next day!
Surgeries Rescheduled
Feb.2 we left for KC. The next morning we checked in, Josiah got prepped for surgery and we met with the anesthesiologist and both surgeons. At the last minute, we were told that they were going to cancel his surgeries. The ENT said that based on his observations, it looked like a classic case of laryngomalacia and there is a good chance he will require a breathing tube and overnight observation in ICU. Unfortunately, they had no ICU beds available. He now has surgery scheduled with just the ENT for Feb. 9th and the hips will be done sometime in the next month. Interestingly, his acid reflux and trouble eating are very likely tied to this airway obstruction. He won’t know until he goes in to look with a scope whether or not it will be necessary to trim any tissue, but he didn’t want to risk needing the ICU and it not being available.
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