History

Saturday, April 19, 2008 12:11 AM CDT

I just wanted to give a quick update on how things are going with 3 kids! It has been a very smooth transition. Evan would just rather ignore Janae, but he is still proud to be a big brother again. Andy absolutely adores his baby sister! He always wants to hold her and he tries to comfort her when she cries. The funny thing, though, is that he can't remember her name. Sometimes he will call her Sarah. Which is funny because he really doesn't know anyone his age or a baby named Sarah. Carl and I are enjoying having a girl! She is so sweet!

I also wanted to share a conversation we had with Evan this morning. As a mother it broke my heart. Out of the blue Evan said to Carl, "Daddy, when I get bigger I want to walk like you." Then he pauses, "But, I can't walk, can I?" Of course, Carl and I are right there beside him trying to encourage him that God made him that way and that he gets to drive a cool wheelchair. Then Evan says, "I want to pray and ask God to heal me so that I can walk." By this point I have tears in my eyes. I try to explain that sometimes God chooses not to heal. Evan says, "Mommy, I want you to pray right now that God would heal me so I can walk." So, choked up, I pray that God would heal Evan (also adding in that God made Evan just the way he wanted for right now and that he was very special). I have been praying all day that God would touch Evan's heart with contentment regarding his situation and a realization that he is special no matter what. I know God could choose to heal Evan, but I also don't want Evan to become bitter if God chooses not to. I have a feeling this won't be our last conversation like this and I pray I will have the right words when it comes up again!

Saturday, March 29, 2008 4:42 PM CDT

IT'S A GIRL!!!!!!!!!!!!

Janae Elizabeth Weise
March 27, 2008
8lbs 8oz
19 1/2 inches

Hey Everyone,
Just wanted to let everyone know that we had a little girl on Thursday, March 27th! We were so surprised! I (Erika) truly thought it was going to be another boy. Carl would say that he had the feeling it was a girl the whole time.
I was induced because I had gone over my due date. The whole labor and delivery took only 4 hours and was a relatively easy process.
We are so excited! Well, at least Mommy and Daddy are. As you can tell by the pictures, Evan is still getting used to the idea.

Check out Janae's pictures!

Saturday, March 22, 2008 9:32 AM CDT

Happy Easter!! We are still waiting for the new baby. My due date is Monday, so we will see what happens.

Evan had a really fun time last night! Carl had rented a Bobcat so he could put in a gravel driveway. Until last night, our driveway was a mud pit. Vistors were getting stuck in our driveway. Anyway, Evan got to take a ride in the Bobcat! We took him off of his vent and strapped to Carl and off they went. Evan is sitting here with me as I write this and he wanted me to include that he has wanted to ride in a Bobcat all his life :).

Monday, March 10, 2008 3:40 PM CDT

Well, we are digging our way out of 20 inches of snow here in Ohio! What a crazy storm! I am so glad I did not go into labor during it all.

Speaking of labor, I have only two more weeks to go until my due date. We still don't know what we are having, but I am really thinking it is another boy. I don't feel ready for a baby because we are still unpacking boxes (we have yet to find the box with the bolts to put the crib together).

The boys have been saying some cute things recently. Andy is confused about the move. One day out of the blue he said, "We've been here a long time. We need to go home." On the way home from taking Evan to school Andy said, "I don't want to go home. I want to go to the house." I guess our old house is "home" and our new house is "the house".

Carl and I have been burdened with Evan's salvation. The other day Carl asked Evan if he knew how to get to heaven. Evan said "Yeah, Jesus will come and pick me up." Carl got a funny mental picture of Evan hitchhiking.

Besides driving around in his wheelchair, Evan has some other big news! Yesterday we noticed that his tooth is loose. I can see the adult tooth peeking through. I have always heard that if the child gets his first tooth early, then his baby teeth will fall out earlier. Evan got his first tooth at 4 months and had almost all his teeth by the time he was a year old. Other big news is that over the weekend he tried apricot jam, peanut butter and a piece of banana. Although each was only a very small bite, we were so proud of him for wanting to try something different!!

Speaking of driving around in his wheelchair, God is continually teaching Carl and I that the things here on earth are only temporary. Our new home already has knicks in the walls, scratches in the floors and a stain on the carpet. Mostly these are from Evan in his wheelchair. Everytime these things happen, we have to take a breath and remember why we built this house in the first place. Our reward is Evan's glowing face. He is so excited with his new found freedom! I guess everything else pales in comparison with that!

I will try to post a couple of pictures of our house another time!

Friday, February 29, 2008 12:55 AM CST

Thank you all for your prayers for our move and for our sickness! This has been a rough transition time! We absolutely love our new house and are very thankful for it, but the circumstances around our move have been less than ideal. Carl and I both had influenza two weeks before we were supposed to move (which meant that not a whole lot got packed).

Last Friday we started (with the help of our parents) packing things up. The weather was horrible with ice just falling from the sky. Late in the afternoon, while Carl and his dad were out picking up the U-Haul, a car slid off the road and hit our tree. The woman was pinned in and complaining of hip pain. Traffic was stopped outside our house for a long time and the paramedics had to use the jaws of life to get her out. That evening because of all the stress I started having contractions. I just had to lie down and drink water the rest of the night.

Saturday the boys and I spend 11 hours in a hotel room with my parents while everyone else got us packed and moved. That was a little crazy because the boys got so tired!

Sunday Evan came down with a stomach virus. Carl and I were up every hour with him. I got sick over Monday night and even this morning I started not feeling well again.

Needless to say we are still living in boxes! Thanks for the prayers!

Tuesday, February 26, 2008 2:50 PM CST

Hello,
This is Erika's friend Carrie updating Evan's web-site. They have moved into their new house. Evan and Erika are both down with a stomach virus and need some prayers. I know that Erika is feeling overwhelmed with trying to unpack boxes, taking care of Evan, and feeling sick herself. Plus this new baby is going to make an appearance in a few weeks. Please pray that Evan and Erika will get better and that Erika will have strength and endurance to unpack and get everything organized before the baby comes. She wanted me to say "thank you" for everyone that came to help them move. It was a huge help!! Erika says, she will update the web-site when she can. They're still trying to get their phone and internet access hooked up. Have a wonderful day.

Tuesday, February 19, 2008 10:03 AM CST

Hello Everyone!

Well, we did not move this past Saturday, which was probably a good thing. Our carpet was on back order and so the move in date was pushed back to this Saturday. We all just needed last week to recover from being sick. A HUGE PRAISE is the Evan never got sick! Andy had a light case of it, but Evan never showed any symptoms! I am so amazed by God's protection over him!

Now we are dealing with another type of sickness. On Sunday Andy threw up two times, but acted like he felt fine. Then all day yesterday he was fine until 5:30 at night. Once again he vomitted. He slept all through the night and then woke up very lethargic. I think he is dehydrated. Right now he is on a towel on the couch watching TV. Once again we need to pray that God would protect Evan. Last time Evan got the stomach flu it was horrible! With our move coming up this weekend, it would be great if we were all healthy!

Thanks for your prayers!

Oh, I forgot to mention . . . We have sold our current house! A couple came and looked at it a second time on Sunday. A few hours later, they came back by ready to make an offer. Tonight they are bringing a contract over! The timing is perfect! God really had his hand in that too!!

Wednesday, February 6, 2008 9:05 PM CST

I just wanted to write a quick update on our sickness. Carl went to the urgent care and they did a swab and it came back as positive for influenza. Thankfully, he was still in the time frame to get the anti-viral drug, Tamiflu. He has been taking it for two days and feels a lot better. I also got a prescription for the boys as a preventative measure. So far, they seem fine. I, however, am feeling horrible! Being pregnant they won't allow me to take Tamiflu. So, I guess I will just have to suffer through this one. This is one MAJOR drawback to being pregnant. I can't even take much to stop the symptoms. I have learned my lesson. Next year we are all getting flu shots!!

Thank you for your prayers! With our moving day scheduled for Sat. Feb. 16th, I am feeling a bit overwhelmed. Well, I am just going to crawl back into bed and pray that this is over soon!

Monday, February 4, 2008 7:50 PM CST

A quick prayer request!! Carl has been sick today with the respiratory flu. It has been pretty nasty. His lungs are full and he has chills and aches. Please pray that the rest of us don't get this!! Especially Evan! He shared a glass with Carl last night and so I know the only way that he is going to be protected is through the power of prayer!

Thank you!!!!

Thursday, January 24, 2008 8:20 PM CST

Hello All!

It is crazy to think of, but I am due two months from today! Time has really gone by quickly! I guess that is to be expected the third time around. This pregnancy has been harder than the other two. I have been absolutely exhausted and just not feeling well in general. Only two more months!!

Our new house is coming along very nicely! This week they put in light fixures and plumbing fixtures. Today they put the hardwood floors in. I can't wait to stop by and see the progress! We were talking about our new house with Evan and he said the sweetest thing. We told him he would be able to drive his wheelchair into the baby's room in our new house. He looked surprised and said, "You mean there won't be any steps or bumps?" After we assured him there wouldn't he then asked if he would be able to see our room too. The upstairs of our current house has been a mystery to him. He has been up there maybe 4 times. This was a great reminder as to why we are building a new house with no boundaries for him!

A couple of things we are really praying about . . . First and foremost is Evan's salvation. It is definitely something I think about. Yesterday he and I had a good conversation about asking Jesus into his heart. I asked him if he had done this and he said no. Then he bowed his head and quickly said, "Jesus, come into my heart". This prayer was promptly followed by, "Ok, now I want to play with my trains". I sighed and acknowledged to God that only He knows the heart. My job is just continually to teach and let the Holy Spirit do His work.

The second thing we are praying about is Evan's schooling for next year. Most likely he is going to Kindergarten. The issue is where. I would love for him to go to a Christian school, but the logistics of driving him up there every morning (25 minutes away) and turning around and picking him up two and a half hours later makes me crazy. The public school would have a lot more to offer for him physically. They would have the adaptive equipment he needs. So, these are just a few things to think and pray about.

Tuesday, January 1, 2008 8:08 AM CST

We have had a really nice Christmas season! Both boys have been healthy! We spent the Saturday night before Christmas with my parents and most of my family from Indianapolis travelled over for a big celebration! On Christmas day Carl's parents came and were able to stay for almost a week. The boys had a great time with all the family!

I feel like we are entering a new phase of parenting Evan. The last few weeks Carl and I have noticed he has some, for lack of a better word, "angst" inside. Maybe it has been the holidays and the change of schedule, but we can tell he has been frustrated about something. A couple of times he has told me, "I just want to be left alone". Thankfully the last few days we have seen more of his typical happy-go-lucky personality. I just think he is growing up and there will be times when his circumstances will frustrate him. Carl and I are praying for wisdom on how to help Evan cope with his emotions.

On the other fronts . . . Our house is coming along really well, but they are telling us it may be March until we are able to move in. The baby is due March 24th, so we will see how all this plays out. Never a dull moment!

Happy New Year!!!

Monday, December 3, 2007 1:03 PM CST

We had a great Thanksgiving!! Evan stayed healthy and really enjoyed spending time with his cousins. He has come to the point where he is not content to sit in his chair with the adults. He wants to be doing everything the other kids are doing. So, Carl and I tried to accomodate that as much as possible, but it was very exhausting for us. He rode on a big wheel, sat on a see-saw, climbed through a tent and played on the floor with trains. We had to be right there holding him or the vent. I know this desire to do what the other kids are doing is only going to get stronger. I have been praying that we know how best to deal with this stage in Evan's life!

Our house is coming along! I have included a new picture. The cabinets and the tile are in, the doors and trim work are going in this week. It is very exciting to watch it all come together! Evan really needs to be able to move around in his wheelchair! He needs that independence!

Wednesday, November 21, 2007 8:37 AM CST

HAPPY THANKSGIVING!!!

We have so much for which to be thankful!! Evan is healthy today and so we start this holiday season off right! I, however, have a cold and feel pretty badly. I am doing my best to wear a mask around Evan. As I was getting up this morning I was complaining to God about the way I feel and He reminded me to be thankful that it is me and not Evan.

Another thing to be thankful for . . . I forgot to mention in the last update that I had gotten a level 2 ultrasound to check on baby #3. So far, everything looks great! We didn't find out if it was a boy or girl because we really want to be surprised again! It was so fun to be surprised with Evan and Andy!

I took some really cute pictures of the boys and will share them on my next update! I wanted to keep the leaves pictures up for awhile longer.

Friday, November 9, 2007 6:46 AM CST

I have been thinking recently about how I am so grateful to God for many things. First of all I am thankful that at this moment both boys are healthy! We went through two viruses with both boys and it seemed to last awhile. Even though we started suctioning up blood from Evan's trach yesterday, he is feeling a lot better and was able to go to school this week.

Another thing that I am grateful for is God's protection. Over the weekend a very scary thing happened with Evan. He was driving his wheelchair around our yard while Carl was raking leaves out of the mulch. Evan decided to back his wheelchair up the pile of mulch we have on the driveway. The incline was too steep and his wheelchair fell over on top of him. So, 220 pounds of wheelchair and ventilator were laying on top of him. Carl ran over and picked up the wheelchair. I was fully expecting Evan to be limp, but he was just in shock. His vent had come off and so I put that back on and we were trying to get Evan to talk to us. He didn't for a long time. Finally he said that he was so sorry because he thought we were mad at him. He told us that nothing hurt and that he still wanted to be in his wheelchair, but not drive in the mulch anymore. The only "injuries" he got were some scrapes on his head. How blessed we were! With his low muscle tone, he could have easily broken a bone or worse! He now knows he is not invincible in his wheelchair. Maybe that knowledge is a good thing!

I have many more things I am thankful for, but will save them for the next entry! Take a look at the kids playing in the leaves!

Friday, October 19, 2007 7:15 PM CDT

Just wanted to update you on Evan's cold. Thank you to all of you who prayed for him the other night when I first posted that he had a cold. He slept that night all the way to 4:30am and then after we cleared out his lungs he went back to sleep and slept until 8:15am. What a blessing that sleep was!

Last night was a different story, however. I was up with him from 1am-4:30am. He has so much trouble sleeping when he can't breathe. We had him on O2, but his lungs were so full. Today he has seemed better, but he has been sitting up most of the day and is able to clear his lungs easier. We will see what tonight holds!

Wednesday, October 17, 2007 4:19 PM CDT

I just wanted to report that we are under the weather here :(. Evan had a sore throat last night and has a runny nose today. He is also complaining of a tummy ache and has been close to throwing up. Andy has a bad cough and a cold. And I feel like I have a stomach virus. So, we have been hanging out at home today in our pajamas just trying to get better.

That's all for now! We may have a long night. So, if you wake up in the middle of the night, pray for us! (When Evan is sick, he doesn't sleep - Aaah!)

Tuesday, October 9, 2007 10:35 AM CDT

Hi all!

We have been doing some fun fall activities! Last Friday we went and picked apples. This has been a yearly tradition with our friends, Bruce and Carrie, now for 5 years. This was the first time Evan was able to go in his wheelchair! He had a blast driving around through the trees and finding apples he could reach. Since we went during the day on Friday the dads were not able to join us and so we had our nurses come along!

Last night Evan got to experience another fall tradition-playing in the leaves! Carl was blowing leaves off our grass and he would blow the leaves up in the air. Evan would drive his wheelchair right through them. He also pretended to be a leaf blower, but would drag the leaves away from the pile making Carl's job harder.

I have pictures from our apple picking day!

Thursday, October 4, 2007 10:16 PM CDT

Just wanted to let everyone know that my brother's baby was born yesterday! His name is Bradlen Andr�s and he weighed 5lbs 8oz. To check out the latest on his progress, visit the website I made for him. www.caringbridge.org/visit/bradlen They definitely need our prayers right now!

Evan said something that was funny but at the same time serious too. He said that if Jesus came and asked to come into his heart he would say, "no thank you". He said it in such an innocent way and we have tried to use it as a teaching moment. Carl and I have really been praying that he would open his heart up to Jesus. At least we know now that Evan has been thinking about it. We'll keep praying about this!

Sunday, September 30, 2007 9:07 PM CDT

First of all I wanted to thank Kendra, Jerra, Bonnie, Jeanette and my mom for making our trip worry free and relaxing! Thank you for watching my kids and taking great care of them!!

Carl and I had a great trip to Florida!! It was very relaxing! I slept so well (first time in a long time :)! It rained the first day and then was beautiful the rest of the time! The ocean was like bath water. I have never been in an ocean that warm before! We saw a stingray right at the shoreline and a shark swiming through. We also went on a tour of the everglades and got to see an alligator up close. I could have reached out and touched it! On the boat trip there was a scenario that reminded me of how God rescues us from unknown danger. A little boy that looked about 2years old was sitting with his parents at the front of the boat. He had a life jacket on, but while everyone was gawking at the alligator no one noticed that this boy started to climb over the front of the boat. His dad realized it just in time and grabbed him. There was a moment of panic (and of the mother yelling and hitting the dad for not paying closer attention). If that little boy had fallen in he would not have drown because he had a life jacket on, but the 12 foot alligator would have been over there in a heartbeat. I just was thinking how so many times we are probably about to walk into danger that we have no idea about and God is there to rescue us. The little boy was confused at why he was snatched up so quickly and why everyone was panicked, but he didn't see the alligator. Sometimes we wonder why things don't work out the way we want them to, but God is protecting us from unseen danger. Thank you, Lord!

Thank you for those of you who were praying for our trip! Everything went well here. Evan wasn't that upset by us being gone and he had no major issues. Our friends, Carrie and Bruce, who went with us had a scary situation happen at their house while they were gone. There was a strong storm that came through and their power went out for three hours! The back-up battery on their son's ventilator wasn't fully charged, the generator wouldn't start and there were no flashlights - everything was pitch dark. Thankfully, God protected Toby and he was not in distress at all! His caregivers ended up calling 911 and getting hooked up to a generator. Overall it was very scary and stressful, but God was there, helping them through it! To read the full story and see how God has used the situation to teach valuable lessons, visit Toby's webiste: www.caringbridge.com/visit/tobyholt.

Monday, September 24, 2007 6:17 PM CDT

Hello everyone!

We just wanted to let you all know of a few prayer requests. Carl and I are able to get away this week! We are going to Florida with Bruce and Carrie (our good friends who have a baby on a ventilator, too)! We are all very excited! Right now, however, I have still been feeling pretty bad with this pregnancy. One would think that at 14 weeks the nausea would have subsided. But that isn't the case here. I also just came down with a cold :(. Pray that I could enjoy this vacation!! Pray also that the boys will stay healthy! It is sooo hard when Evan gets sick!

My brother and sister-in-law are scheduled to have their baby on October 3. The baby has been diagnosed with Spina Bifida and will have surgery immediately after it is born. Pray for a safe delivery and surgery and for encouragement in these circumstances! I will let you all know how things go!

Thanks so much for praying!!

Wednesday, September 12, 2007 8:46 PM CDT

Hi!
Just wanted to share all the good news! First, Evan did great in the telethon! He told a knock-knock joke and then while Carl and I were talking he was making funny faces. It was too cute! I will probably get a copy of the whole thing in the next few days. I will try and figure out how to put it online so anyone from out of state or who missed the telethon can watch.

Our house is coming along really well! I included a picture of what it looked like tonight when we went to visit!

Evan started school yesterday. Its just a little Mom's Day Out, but it is pretty academic in nature. He loves it!

The other news is a surprise picture! So make sure you check out the photo page! :)

Have a great week! It is beautiful weather here! Finally cooler!!!

Saturday, September 1, 2007 8:21 PM CDT

Hello All!
I just wanted to write a quick update to let those who are local to Central Ohio know that Evan's MDA telethon piece will air on ABC6, Monday at 10:40am AND 1:10pm. Evan will be interviewed live after the 1:10pm showing! So, if you are going to be around this area on Monday, tune in!

That's all for now!

Sunday, August 19, 2007 8:01 PM CDT

We have had a full and fun weekend! Carl's niece, Avery, came and stayed with us and we went to COSI (a kids' science museum) and the Zoo. Everyone had a great time! It is interesting how I see things differently having a child in a wheelchair. COSI was a lot of fun, but I didn't feel like they made a huge effort to make things accessible for kids in wheelchairs. We had to unbuckle his shoulder harness so he could reach really far and do the activities. He wasn't just able to roll up underneath and play. He tried so hard to do the things the other kids were doing, but it just makes me sad to see him struggle!

We had a great time when the news station came and did the piece for the MDA telethon. First they interviewed Carl and I and then the news anchor just sat on the floor and played with Evan. Evan just thinks this guy is his best friend (see the picture I included). The piece on Evan will air locally on ABC6 at 10:40am on Labor Day. He did such a great job! In fact, the news anchor said he has worked with a lot of kids, but he really felt like Evan was special and would make a good National MDA ambassador. I am so thankful that God is using Evan even at such a young age! God is truly able to take difficult situations and make them something that can be used for His glory!

On a more difficult note. . . We had an appointment with Evan's physical medicine doctor. She noticed a few things. First, that his feet are pretty bad. Meaning his feet don't bend upward very much. They are very tight! Second, his right leg beneath his knee is growing out instead of straight. She thinks this is a result of scar tissue in his right thigh from his muscle biopsy that he had when he was 6 months old. She is recommending surgery on his leg and both feet, but is referring the decision to an orthopedic surgeon. I really don't like surgeries!! Another thing she noticed from some x-rays she had taken is that his bones seem very thin and weak. Evan got a bone density screening done on Thursday and we will find out the results this week. The doctor is afraid he doesn't have enough calcium. When things like this happen I am reminded of Evan's frailty and how everyday is a gift from God!

"As you do not know the path of the wind or how the body is formed in a mother's womb, so you can not understand the work of God, the Maker of all things." Ecclesiates 11:5

Sunday, August 5, 2007 8:08 PM CDT

Our house is coming along!! Take a look at the new pictures! We can't wait to get in there!

Evan filled up all the slots in his "potty chart"! That meant he kept his diaper dry and went on the potty 36 times in the last few months! I think he could truly be potty trained, but it is so hard to get him on the potty. Basically it is our fault. Anyway, because he filled up the whole chart he got a surprise. So, last night he got to sleep upstairs in our bedroom. You have to remember he has only been upstairs a couple of times. To sleep up there with mommy and daddy was a big treat!

It has been sooo hot and humid here and it is only going to get worse this next week. I feel really badly because Evan wants to go in his wheelchair. Everyday he asks and I have to tell him it is too hot. :(

This Tuesday we are being interviewed by the local news channel as a featured story for the MDA Labor Day telethon. It should be fun. The news anchor we met when Evan did the commercial is coming to do the interview. Evan will enjoy seeing him again (he spots this guy on the news every so often). So, this interview will air on Labor Day and we will be interviewed live that day. My prayer is that Christ's light will shine through us!

Sunday, July 22, 2007 9:25 PM EST

We had a very full and fun week last week! Wednesday night is our usual night to go to the zoo. The boys look forward to it every week. This last Wednesday was no exception. We drove all the way up there (about 30 minutes) and drove into the parking lot. At that point I realized that I had forgotten the membership card. We didn't think they would look us up and let us in and we definitely didn't want to pay full price for an hour. So we drove right through the parking lot to the exit and left. Andy started bawling immediately. Evan got teary eyed and he was trying so hard not to cry. We decided instead to go to a park in the area that is handicap accessible. As soon as Andy got out of the car he sat on the grass and cried. I asked him what was wrong. He said, "I want to see animals". Evan didn't let it go very easily either. The next morning the first thing he said when he woke up was, "Mom, I wanted to go to the zoo." Ok, so I feel like a bad mom :).

That was Wednesday. Thursday, after our nurse left, I took the boys downtown to see Carl's office. It was definitely an adventure. I had Andy in his stroller and Evan was in his wheelchair. Trying to get us all into an elevator was interesting. The door almost shut leaving Evan by himself in the elevator. I don't know what I would have done if that had happened. Carl's office is on the 26th floor and so Evan got to look out the window at all the other buildings in Columbus. That was a treat!

Friday we went to our friends, Bruce and Carrie's house. Evan got to drive his wheelchair around the yard, "running around" with the other kids. He had a blast being free!!

Saturday we had an early birthday celebration for Evan with my parents. They gave him a tee ball set and he is able to hit the ball with the bat. I think he is proud of that!

Those of you who are local to Columbus will have to keep an eye out for Evan's commercial. It is supposed to start running in the mornings during local news on ABC 6 or FOX 28. We hope to tape it. I wish there was a way I could post it on this website! I will have to look into that.

Evan's birthday is on Tuesday. I can't believe he is 4 years old!!

Thursday, July 12, 2007 12:39 AM EST

It is beautiful weather here today!! The humidity from the last few days is way down! Last night we went to the zoo and got free ice cream. We met our friends Bruce, Carrie, Conor, Garrett and Toby there. It was a lot of fun and Evan did a great job driving (except for running into my legs - that left a mark :)

So far it has been a fun summer! The boys have been going to bed later, but we have been able to do so many things!

I updated the house picture. Things keep moving along!

Sunday, July 1, 2007 8:25 PM CDT

As I write this message, Carl and Evan are out fishing together. It is 9:30pm (he usually goes to bed at 7:30pm), but I'm sure Evan doesn't mind. He was so excited to go! I'm just glad the two of them can spend alone time!

Last week was a fun week. On Wednesday, Evan was able to be in a commercial!! They filmed it at a local golf club and it was to advertise a golf outing coming up that will support MDA (Muscular Distrophy Association - which Evan is an local ambassador). He was in it with a news anchor and a realty company executive who is sponsoring the outing. When we got there the news anchor wanted to find matching shirts for all three of them from the pro shop. They didn't carry any children's shirts and so we had to put a woman's shirt on him and tuck in the back so it didn't look so big. After the shoot we got to take the shirt home. I got a really nice golf shirt out of the whole deal! Anyway, Evan got to say two lines. He did a great job! The commercial is going to air here locally starting the middle of July thru the end of August on ABC 6 and Fox 28. You have to catch it quick because it is only 20 seconds and (if they don't cut it) Evan has the first line!

The house is coming along really well. This weather has been great and they are getting a lot done!

Well, I guess that is all for now!

Monday, June 25, 2007 8:29 PM CDT

We have a hole in the ground!! They broke ground on our new house last Thursday and have been on a roll since the weather has been dry! We have been visiting the site almost everyday with the boys. They love seeing the digger at work!

On Saturday we went to a picnic with a group from church. Evan especially had a blast because he was able just to wander around in his wheelchair. He is getting a lot better at steering. He is also getting more daring with it. There was a steep hill up to a slide and Evan loved going up and down it. It was a bit scary when he would head down the hill and practically be hanging out of his chair (we need to get him a shoulder harness).

Check out the new picture of our "house" (or hole in the ground)!

Tuesday, June 19, 2007 3:06 PM CDT

Hello!

Well, God has answered our prayers and this pneumonia never got bad. In fact, by last Tuesday Evan went to a couple hours of Vacation Bible School at our church. Then he went everyday after that! He really enjoyed it! Now he is completely better, but of course we still have to give him his antibiotics for another week :(.

On Monday we saw his pulmonologist and she thought he looked great! She gave us a plan for trying to wean him off his ventilator. We are going to turn off the breath rate for about five minutes a day. This means that the ventilator will not give him any forced breaths, but when he initiates a breath the machine will help push air into his lungs. We will then build up from five minutes and see what he can tolerate.

They are breaking ground on our new house tomorrow! (This is for real, I think :) We can't wait to have a place for Evan to roam!!

Monday, June 11, 2007 7:40 PM CDT

I wanted to give a quick update on what is going on here. We will start with the fun news and then address the not-so-fun news.

Last Wednesday we were able to go to a farm/resturant/ice cream parlor with my parents. They have cows and goats there that the kids loved to pet. Both boys got to sit on an old time tractor and pretend to drive. This was a big hit! We ate lunch there and later Andy had his first real bowl of ice cream. I have included pictures of our time!

Ok, now with the not-so-fun news. We spent yesterday afternoon and evening in the ER. Evan has had a cold for a week and a half. Over the weekend it took a turn for the worse. He was coughing so much, but still not able to get everything cleared from his lungs. We spent 5 hours in the ER for a chest x-ray, a trach culture (which just requires him to be suctioned and the secretions to be put in a container) and a blood gas (which is just a finger prick). Why this took so long, I can't tell you except that this was actually one of the shorter visits we have had to the ER. Anyway, after all that we found out he has pneumonia and bronchitis. He is currently on two antibiotics and tomorrow will probably start a third. So far this illness has not been too bad. Hopefully it won't get any worse. Tonight he told me his lungs hurt. They must after all the suctioning we have done!!

We covet your prayers for quick recovery and rest for Evan and strength and rest for us! Thanks! I will let everyone know how things go!

Monday, May 28, 2007 8:19 PM CDT

Happy Memorial Day! Hope everyone had a great weekend! We traveled up to Akron where a lot of Carl's family is located. His aunt and uncle hosted a family reunion with about 50 some people. Evan and Andy had a lot of new experiences while there! Carl's aunt and uncle live on a lake and so both boys went on a pontoon boat ride. It was great until we got hit by a downpour. We were trying to cover Evan and all his equipment up, but they still got soaked! Evan also went fishing for the first time. On his first cast he caught a fish. Andy rode in a kayak with Carl and also got to ride with Carl on a Segway (this is something you stand on and when you lean forward it moves and carries you just about where ever you want). All in all we had a great time, but are pretty tired. Neither child took a nap all weekend. There was just too much to do!!

Check out the new pictures of our trip! (The picture on this page is of Evan feeding horses from his carseat)

Friday, May 18, 2007 6:11 PM CDT

We have had a great few weeks! Evan has gotten out of the house a lot. We have been to the zoo twice, to the park and out to eat multiple times! I can't wait for him to get his new wheelchair. By the way, that is supposed to arrive this next week! He is going to have a blast! It will be a little more challenging for Carl and me. We are going to be chasing him all over.

Evan had his last week of school this week. (Thanks to all his teachers! I know you all read his website :) I am going to try hard to find fun things to do this summer. The past few summers he has been fine just staying home and playing with his toys. Things are starting to change. He definitely needs more stimulation! If anyone has any summer ideas for here in Columbus that Evan might be able to participate in, feel free to e-mail me!

Andy's birthday is on Tuesday. I can't believe he is already 2 years old! They are both growing up so fast!

Enjoy the weekend!!

Sunday, April 22, 2007 4:06 PM CDT

Hello everyone!
It is such a beautiful day here! This weekend has been perfect! On Friday my parents and I took the boys to the zoo. We had a great time! I was determined to let Evan do things the other kids his age were doing. Example: There were kids standing in line to touch starfish. The sign at the front of the line said, "no strollers". Tough, I said, that is the only way Evan is going to get up there. So, we blocked the whole line as I lifted him out of his jogging stroller up to the water. He thought it was pretty cool. My parents and I also got Evan on the carousel. He sat on my lap on one of the benches and we put the ventilator next to us. This was his absolute favorite part of the zoo!

Today Evan said something funny I wanted to share with everyone. When we went out to the car for church this morning, Evan noticed that Carl's car was not there. Instead Carl had parked his lawn tractor and trailer there. Carl, who is always teasing Evan, said, "Do you think daddy's car turned into a tractor?" Evan was convinced it had. Then Carl said, "Do you think daddy is going to have to drive this to work tomorrow?" Evan said he would and then added, "And I will have to go with you in the wagon." We both started laughing at the mental image of Carl in his suit, driving the tractor down the highway with Evan sitting in his chair in the trailer.

If you could, pray for strength for us in the next couple of weeks. Evan's day nurse that he has 4 days a week had thyroid surgery on Thursday. She will probably not be back for almost 3 weeks. That in and of itself will be tiring, but now our night nurse is not able to come this next week either. Thankfully, we have great family and friends who are willing to help and are a great support. Unfortunately, only a couple are able to care for Evan. So, I will not be able to leave the house much in the next few weeks. With this beautiful weather, that is going to be very hard!

Friday, April 13, 2007 7:59 PM CDT

I hope everyone had a good Easter! After church in the morning we went over to my parents house and had lunch. Then the boys were able to hunt for their Easter baskets. Evan had a great time "hiding" eggs (with the help of grandma or grandpa) and then someone would try to find them.

Evan started showing signs of a cold yesterday and sure enough he was miserable by last night. It is so hard watching him suffer through a cold. He can't blow his nose and so it just gets so clogged, he can't get comfortable. We try to suction his nose, but he absolutely hates that! Last night I tried spelling "nose suction" out to Carl to see if he thought we should try and Evan had a fit and said he didn't want his nose suctioned. So now, we have to spell it out backwards. There are some downsides to having a smart kid :).

Evan has been saying the funniest things (I guess that's not new). He has also been saying some touching things. Last week I was giving him his herbal supplements. My dad was watching and told Evan that the vitamins would help make him stronger. Evan said, "Yeah, and when I get stronger I will be able to crawl and walk and wrestle with daddy." My heart broke at that moment. He knows he is different.

I have been thinking about heaven lately. What a merciful God we serve that he has something awesome waiting for us! This life is not all there is! In this world we will have trouble, but Jesus is preparing a place for us where all our earthly trouble will just disappear. "For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all." 2 Corinthians 4:17 I am so thankful for that hope! Someday, Evan will be able to run on streets of gold and his body will be whole. I pray every night that Evan would come to realize he needs a relationship with Christ. "I have no greater joy than to hear that my children are walking in the truth." III John 1:4 I pray also that any of you who are reading this and don't know Jesus as the one who forgives your sins and the one who can bridge the gap between you and God, will consider what your future holds after this life is over. If you are wondering how we are dealing with these trials in our lives, all I can say is it's our relationship with Jesus and the hope that He brings.

"So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal" 2 Corinthians 4:18

Wednesday, March 28, 2007 9:16 PM EST

On Monday we were able to participate in another Goodwill Ambassador opportunity. The Kroger Company is a great supporter of the Muscular Distrophy Association. They had a fundraiser/award ceremony for MDA. Evan had a great time! He "played" basketball with one of those hoops that keeps score. They gave us a bunch of raffle tickets to try to win prizes like a digital camera or portable DVD player. Then they gave Evan a lot of loot to take home including an Easter basket with a basketball (he is holding it in the picture). Evan and the other little MDA Goodwill Ambassador were given plaques to give to the Vice President of the company. There were a lot of pictures taken and of course Evan was a big ham!

We haven't heard anything about the wheelchair yet, but are getting anxious. We would love to have it by Memorial Day weekend when we are going to a family reunion on the lake.

Tuesday, March 20, 2007 7:33 AM EST

Things are going well here! Not a whole lot new. Last night we had a wheelchair rep come and show us a really great wheelchair! Evan loved it! It is so much smaller than the one we currently have and Evan would sit lower to the ground. The wheelchair we have right now is big and looks so medical. It is intimidating for people (especially other kids). Because he sits so high up, kids don't come up to play with him. Evan drove this new wheelchair around our house and loved his freedom! He was very sad when we told him the rep would have to take it back with him.

We are not sure what the insurance company is going to think about paying for another wheelchair (my guess is they won't be happy). Carl and I feel like this is so important for Evan's development that we are willing to give it a try.

Evan has been doing pretty well with eating. The other night he asked if he could have something to eat! That was a huge step!

We are starting to face decisions about his schooling. I'm not quite sure what I want to do. The thought of getting him ready for school and packing him up into the car every morning, is quite tiring! We will just need to continue to pray about this!!

Our good friends brought their son home from the hospital yesterday after 2 months. He came home on the same ventilator as Evan. He also has a feeding tube and a nurse 16 hours a day. Our friends will now need to adjust to life with a special needs child and a nurse. They definitely need prayer!

Thursday, February 15, 2007 3:15 PM CST

I just wanted to take a moment and brag on how well Evan is eating! Last week we decided to try something besides the usual yogurt. We gave him baby food plums (which I happen to think taste pretty good :). Apparently Evan didn't think they were too bad either. He has been doing really well eating them! He will eat a whole (baby) bowl full!

I know some of you out there have been specifically praying for his eating! Thank you! Keep up the good work :)!

Tuesday, January 30, 2007 9:34 AM CST

We had a great time at the firestation! Evan made a pizza. I really thought it would be a sensory issue with the sauce, cheese and pepperoni, but he loved it! He got to sit in the firetrucks (I have pictures of that). Two of the other children brought service dogs with them. Those labs were a hit with both Evan and Andy! I wish I would have gotten a picture of Evan nuzzling with them. It was too cute!

The article in Business First that featured Evan turned out great! They picked a cute picture of Bonnie (Evan's nurse) and Evan playing with a puppet. Thankfully, the article accurately quoted both Bonnie and me. It was a well written article highlighting the low pay that homecare nurses have (they haven't had a raise in ten years).

Well, that's all for now!

Friday, January 26, 2007 9:06 AM EST

Our friends baby is doing a lot better! They hope to move him out of ICU today! Thank you for praying!

Evan has had a lot of fun things happen in the last few weeks. I have become his PR agent! Today he is supposed to be in the magazine Columbus Business First. We spent last Friday morning with a photographer and had a great time! So, if you live in Columbus, you'll have to pick up one of those magazines and check him out!

Another fun thing is Evan was asked to be a local Goodwill Ambassador for MDA (Muscular Distropy Association - Spinal Muscular Atrophy is a subdivision of MDA). Tomorrow we are going to a pizza party with the firefighters to encourage them in their MDA drives. We will also have to make a few appearances at other fundraisers.

Evan's picture is also supposed to be on the front of an invitation to the SMA fundraiser here in Columbus. I haven't seen this one yet, but I think they are using the same picture as the MDA ambassador.

Check out my pictures and see the MDA press release!

Friday, January 19, 2007 10:12 AM CST

There are some fun things I wanted to say about Evan and what he has been doing, but it just doesn't seem approprate right now. Our good friends had a baby three weeks ago with Spina Bifida. Every thing seemed great until Monday and he ended up back in the hospital. Yesterday he was transferred to ICU. His blood pressure was up, his temp down and he needed help with breathing. When you get this update, if you could take a moment to pray for little Toby, I know the family would really appreciate it! I have been writing updates on his website. The address for that site is www.caringbridge.org/visit/tobyholt. I know how faithful you all are in praying for Evan and God has truly answered those prayers! Now there is another baby who needs prayer! Thank you!

Wednesday, January 10, 2007 7:17 PM CST

Evan is finally on the mend! This cold has lasted 2 weeks and he has coughed so much! Every night when we put him to bed he would just start coughing and his oxygen numbers would drop. It took a lot to get him to go to sleep (many suctions, oxygen, etc.) Then he would wake up at 5am and need a lot of suctioning again. By then he was up for the day. I think Carl and I may finally get some more sleep! We put Evan to bed 10 minutes ago and I have not heard anything from him!

God continues to show us He is in control!

PS I have added new pictures!

Tuesday, January 2, 2007 11:34 AM CST

Happy New Year!!

We brought in the New Year with colds (at least the boys did). So far, it has just meant a lack of sleep. Evan, thankfully, has not had too hard of a time. We will see what happens as the week goes on.

God has been so good to us this past year! We look forward to see how God will work in the coming year!

Tuesday, December 26, 2006 6:45 PM CST

I hope everyone had a Merry Christmas! We did! Evan had a blast with all the family and friends (and presents, of course). By the time we got through three Christmas celebrations he had gotten the hang of opening presents. Unfortunately we might have gotten a little carried away because when I asked him why we celebrate Christmas, he said it was for the presents. You can be assured we went the through the entire Christmas story again and then I had him fill in the blanks with some of the main points. Hopefully now he will know for sure why we celebrate Christmas!

Merry Christmas and Happy New Year!

Thursday, December 7, 2006 3:14 PM CST

It is quiet in my house right now and so I thought I would update the webpage. Hopefully, I will be able to get it done before they both wake up from their naps.

In the last few weeks we all have been pretty healthy! Andrew had a bout with a double ear infection (his first ear infection ever) two weeks before Thanksgiving. Then he reacted to the antibiotics. He was covered with spots! When I took him out to run errands, people steered clear!

I have started Evan on a herbal supplement called Glyco-nutrients. I am supposed to mix four powders up twice a day for him. It is hard to get that done, but I try to give it to him at least once a day. Who knows what it will do, but it is worth a try!

Last week we went and saw the Physical Medicine doctor. She has always been so negative about Evan and his condition. She never thinks he can do what we know he can. So, I was dreading this appointment because I knew there were some issues we would have to discuss. Thankfully, her attitude was much better this time! She even told me that Carl and I were doing a great job parenting. What a change from every other time we've seen her. Anyway, yes, Evan has issues with his wrists. She seems to feel that braces would help. We received the braces this week and he doesn't like to wear them at all. Hopefully he will get used to them! The other issue we had to discuss was about his back. He got x-rays taken while we were there and, sure enough, his back is very curved. We have been referred to an orthopedic surgeon. Eventually he will need to get a rod put in. Once again she made me feel better by saying there was nothing we could have done to prevent this. His bone is probably not curved. His muscles are just too week to keep his back straight. I guess this is just the reality of the disease.

I am so glad that God will be with us through every step! Some women at my church went through a Beth Moore Bible study and my friend told me something she learned that has stuck with me. God will either deliver you from your trials or he will deliver you through them or he will deliver you into the arms of Jesus. What a loving God we serve!

Friday, November 17, 2006 8:23 PM CST

Hi all,
I wanted to let everyone know (because so many are asking) that we are getting braces for Evan's wrists and hope that it will help his grasp. We have come to realize that his hands are turned out at almost a 90 degree angle. If you try to grasp something with your hand out that far it is nearly impossible. So, all this to say we really don't know if his hands are getting weaker (it may be possible) or if his hands have gotten in such a bad position (partly, I'm sure, from so much time on the computer) that once corrected his grip will be a lot better. Only time will tell.

Thank you all for you prayers and notes of encouragement! It is amazing to think that people are still praying for us after 3 years. By the way, today is the 3rd anniversary of Evan first going into the hospital. Three years ago today life was relatively easy. We had no idea what was in store for us! As far as we knew Evan was a healthy baby who just needed a simple surgery. All the doctors told us we would only need to be in the hospital a week. Three months later, our baby rode home in an ambulance attached to equipment that weighed more than he did. If someone had told me that my baby was going to turn blue multiple times, have surgeries, be fed through a tube and breathe with a machine, I'm not sure I would have signed up. If I had been told that we would have other people living in our house 16 hours a day, therapists in and out and numerous doctors' appointments, I would have balked. It has been amazing to see how God leads us day by day and gives us strength for that day. God has led us on a journey that was totally unexpected (I don't think anyone plans on these things happening). Through it all God has taught us things we would have never learned otherwise and for that I am grateful.

As we approach Thanksgiving, I believe we can even be thankful for the trials God has allowed in our lives. With them we are molded into Christ's likeness.

Monday, October 30, 2006 7:30 PM CST

My heart is hurting tonight . . . It has been a long time (about a year and a half) since we have seen any significant change in Evan's condition. This morning, however, he was trying to hold the pen for his Leap Pad and couldn't quite grip it. Carl said he also noticed that at Sunday School Evan was having a lot of trouble coloring. I can't believe how fast this happened. Last week he was writing his name so well. This was definitely a wake-up call to pray so much more than we are!

As I wipe away my tears while writing this, I am reminded of a Keith Green song that says, "I can't wait to get to heaven where he'll wipe away all our tears." Thank you, Jesus, that when we get to heaven Evan's body will be completely perfect!

Please pray for our little guy! He is such a joy! I truly need God's strength if he chooses not to heal him.

Saturday, October 28, 2006 9:14 PM CDT

I just wanted to let everyone know that Evan is doing great now!! He started feeling so much better at the beginning of the week. He has even been sleeping in until 8am!! Mommy and Daddy are loving that!

We had our new night nurse two nights last week. She is wonderful! I feel so comfortable actually going to sleep! What an answer to prayer!

Evan has been talking so much more recently (not like he didn't talk before, but now he won't stop). Last weekend I went on a women's retreat and when I got back I noticed that his language had developed even in the few days I was gone. He said, "Mommy, it is so good to see you." Then he noticed I was wearing a necklace and said, "Mommy, you have a necklace. It is so very pretty." Even though his non-stop chattering can get a little annoying, I am so thankful for it. There was a long time there that we couldn't even hear him cry and didn't know if we would ever hear his voice again.

Tonight we were trying to put his voice to good use and have him record our answering machine message. Carl made him do it over and over for about an hour. It's a good thing Evan loved doing it! It still isn't perfect (you can't understand the word, "Weise", which is kind of important.) Oh well, it is cute anyway.

Tuesday, October 17, 2006 9:27 PM CDT

I wanted to update you all on the great weekend we had picking apples, but instead I am writing to ask you to pray! On Sunday Evan's cold took a turn for the worse. He was gagging all day. Sunday and Monday nights have been some the worst in Evan's history. He has been up every 10 minutes or so needing to be suctioned and burped. He is sooo uncomfortable. We took him to the urgent care last night and found out he has pneumonia. Tonight looks like it is going to be another rough one. His tummy is so full of gas he can't get comfortable. So far, his lungs haven't been the problem. Thankfully, he is keeping his oxygen levels up really well.

I guess I would say we would be grateful for your prayers right now. In the last 48 hours Evan has only slept 4 hours. Poor guy! I feel so badly for him! Carl and I have been able to take turns sleeping in his room and so we each have gotten a few hours of sleep.

Sunday night I cried out to God begging for some relief. In our Bible study at church we are studying I John. That night we had just talked about walking as Jesus did and having evidence of my Christian walk. These verses came back to me and I felt like God said, "I'm not going to take you out of these circumstances so you need to make sure your attitude is that of Christ's. Your character is more important than your sleep." Needless to say, that changed my attitude. Instead of feeling angry at the situation, I felt a lot more loving towards Evan.

Pray for sleep (especially for Evan) and pray that our lives will continually be molded to be more like His!

Well, I need to head to bed. It may be another long night. Thanks again for your prayers!

Thursday, October 5, 2006 2:31 PM CDT

Hello everyone! Sorry it has taken so long to write! Things are busy here as always. Evan, Andrew and I have colds. Thankfully Evan's isn't too bad and he hasn't missed school because of it.

By the way, Evan started school a few weeks ago. He absolutely loves it! Today they learned about Jesus feeding the five thousand. They talked about fish and the letter "F". The other night he said he wanted to sing a song. So I said, "ok what song?" He started singing it and it was in Spanish. I guess he learned it at school. He is really picking up a lot!

On the medical front; we have lowered his ventilator down to 6 breaths a minute. He is doing great with it. The next step will put the vent down to 0 forced breaths. That means that he will have to initiate all the breathing. The machine will give him an extra push everytime he initiates, but it will require more strength on his part.

A few weekends ago we found a handicap accessible playground. Evan can drive his wheelchair up and down the ramps. There are swings he can swing in and a sandbox raised to his level in the wheelchair (We have not ventured to the sandbox yet. Mom doesn't want to deal with sand all over the wheelchair and in vent tubing.)

We have a night nurse! Praise the Lord! Last night was her first night and we really like her! She will only work two nights a week, but that is better than nothing. Her main goal is to keep him asleep and that is fine with us!

About our house plans . . .We are working with the builder to finalize the plans. Hopefully we will break ground in a couple of months. I can't wait for Evan to actually be able to drive around the house in his wheelchair!

I am not able to post new pictures at this moment because Evan wants me to build a tower with him, but I hope to post them this evening. So, if there aren't new pictures right away, check back later! Thanks!

Friday, September 8, 2006 9:34 PM CDT

Is it really September already?! I can't believe that Evan starts his school next week! I met his teachers last night and them seem great. Evan is so excited!

A couple of weeks ago we had to take Evan to the pediatrician to get his 3 year check-up and get some long overdue immunizations :(. They checked his eyes and ears and everything there looks great. When the nurse was showing him the eye chart with different shapes he was doing fine until we were almost done. She asked him what the shape was and he said, "A boat." She looked a little concerned and said, "Are you sure?" He said with a big grin, "Nooo, it's a heart." He is such a tease! I wonder how many kids tease the nurses and trick them. The big news (and I mean BIG) is that Evan is 38 and 1/2 pounds and is 41 inches tall. That is 93% for his weight and his height is off the charts. He told us the other day that he was as tall as a giraffe and now I believe him :).

The other night we all went to a fundraiser sponsered by Merrill Lynch. Evan got a balloon animal made for him, got a temporary tatoo and got his characature (sp?) drawn. I have included that on the picture page.

Prayer Requests: Andrew has a bad cold. Pray that Evan doesn't get it so he won't miss his first day of school. Wow, it is hard to keep two boys healthy! Also, Carl and I are exhausted right now. We have an interview on Monday with a potential night nurse. We really need sleep!

Tuesday, August 22, 2006 7:50 PM CDT

Evan has been busy the last few weeks! He got a trach infection which caused us to have to suction him every few minutes. Thankfully, he didn't feel sick. Just a lot of secretions!

Two weekends ago Carl and I were able to get away. Two women who are nurses offered to stay with the boys so we could get a break! We went up to the Ritz Carlton in Cleveland. What a treat! Thanks Kendra and Martha!

Evan had a doctor's appointment yesterday. He got a blood gas done to see how well he is being ventilated. The doctor said the results, "looked beautiful". This means that we are going to start trying to wean Evan from the vent. The doctor is convinced that his diaphragm is relatively strong since he can talk so well. On the way out of the hospital, Evan's vent battery died and the machine turned off. The nurse and I were scrambling to find an outlet. The whole time Evan was totally calm. Maybe he really does have more strength than we give him credit for.

I also have great news (at least for a mother of a three-year-old . . . others might not get so excited)! Tonight Evan went pee-pee in the potty for the first time! We had to call both sets of grandparents to tell them. It is so nice to know he has control of that and can feel when he needs to go. Maybe he really can get out of diapers in the near future!!

Monday, July 24, 2006 9:06 AM CDT

HAPPY BIRTHDAY, EVAN!! Today is Evan's birthday! He is three-years-old. I wish he felt better for his birthday, but he has a really bad sore throat. What a way to celebrate.

We just returned from vacation to Lake Michigan! This was the furthest and the longest we have been gone. The week went very smoothly with no major problems. Evan was able to do a lot of things he has never done before! He went swimming (shhh, don't tell his doctor :) He sat on Carl's lap in the shallow water. He had such a great time! He also played shuffle board and miniature golf. One day he spent in his wheelchair riding all over. We took him to the top of a sand dune that overlooked the lake.

We were at a camp called Maranatha in Muskegon, Michigan. Every morning and evening there was a children's program where they did a lot of activities. Many of the children befriended Evan and helped him. Friday evening there was a closing program and Evan got on stage with all the other children and sang. I wish I had taken a picture! It was so cute and he was loving it!! The trip was a great experience for him!!

Friday, June 30, 2006 8:50 PM CDT

Not a whole lot new to report. Evan has been struggling with constipation. Not sure why. We are getting an appointment to see a GI doctor (I think we will have almost every kind of doctor there is after this).

Evan's pulmonologist is going to start to reduce the settings on his ventilator soon. She would like to see if we can wean him at least during the day.

God has given Carl and I such a burden to pray for Evan! He is realizing more and more that he can't do certain things. It breaks our hearts! He is such a sweet kid with an amazing personality! God has truly blessed us with him!

Tuesday, June 13, 2006 6:30 PM CDT

WARNING: This journal entry contains answers to prayers! If you do not believe in the power of prayer, you may not want to read further :).

Answered Prayer #1: We are home from the hospital after our overnight stay. Evan has tolerated his new ventilator extremely well!! There are a few things we, his caretakers, need to get used to (ie. annoying noises it makes, heavier tubing and water that leaks out of one of the tubes). However, the pros outweigh the cons. This vent weighs only 14 pounds as opposed to the old one weighing 40. We will be able to take that huge tray off the back of his wheelchair allowing him to better maneuver.

Answered Prayer #2: Evan has still remained healthy! Andy has been fighting a nasty cold for the last week. We have been praying that Evan doesn't get it especially because of the cough!

Answered Prayer #3: As I mentioned in my last journal entry the doctors had wanted to look again at Evan's diaphragm. Yesterday he went in for an ultrasound and got pretty upset by the whole thing. The doctors couldn't see the diaphragm moving at all which is understandable since Evan was holding his breath. So, I mentioned this fact and the doctors decided to try a fluoroscopy today. This is basically a live x-ray where they can see things move. This time when I took him off the ventilator he remained relatively calm. I told him to take deep breaths. As the doctor watched he said, "Well, I see some movement." Usually when the diaphragm is paralyzed it moves upward when a breath is taken (normally, it moves down). Everyone there watching agreed they saw the diaphragm move down when he took a breath. Out of all the fluorscopies he's had, his diaphragm has gone up. This time it did what it was supposed to. Now, this doesn't mean we are just going to take him off the venitilator. Nor, does it necessarily mean the diaphragm is better. But, it is a huge encouragement to keep praying! We don't know what God might have planned in the future. All he asks us to do is pray and trust in Him and that is what we will do.

Evan was able to go home with lower settings on his ventilator. He is now down to 10 breaths a minute (he used to be on 12). His pressure support has also been lowered slightly. All of this is great news!

We serve an awesome God! I believe He is going to do something greater than we could have hoped for or imagined in Evan's life. That may not mean healing at all, but whatever it is, I know it will give God glory!

Saturday, June 10, 2006 8:37 PM CDT

Well, it is 9:30pm and as I write this Evan is in his room calling for me. He has not been going to sleep recently until 10pm! It must be the summer light coming in his window. Then, every morning at 6:30am his eyes pop open and he says, "It's light outside. Time to wake up!" Andrew, on the other hand, woke up this morning at 11am. He had gone to bed at 7:30pm. I guess since he is sick with a cold his sleepiness is understandable. This cold is a bad one and so we are praying that Evan doesn't get it!

On Monday Evan is being admitted into the hospital to switch to a new ventilator. This new one is about a third the size of his current one and will be so much better to transport. I know this change will be good in the end, but I hate change!! It will be hard to see him struggle to breathe while we figure out what needs to be adjusted! Pray that it will be a smooth transition. We will be there at least over night.

While we are in the hospital Evan's doctor wants to check his diaphragm again. She said it is amazing he can talk so well because that shows he has pretty good strength. I don't know what God's ultimate plan for Evan is, but Carl and I still daily pray for his healing. We know God is still doing miracles today, but we also know that God may get more glory keeping Evan the way he is. We will just have to wait and see what God chooses to do!

Thursday, May 18, 2006 7:37 AM CDT

I wanted to update you on some things that have been going on. First, we got denied the Medicaid Homecare Waiver, again. In order to appeal, they needed us to send in a written reply in 10 days. Well, that 10 days has come and gone. I don't think another appeal would have changed anything. Besides, they keep telling us we won't lose any services. If we do, we are definitely going to fight back!

The last month we have done some fun things. My mom and I took the boys to the zoo. It was an absolutely perfect day!

Carl has been taking Evan out on errands just the two of them. We had never taken him out with just one person before. Of course I couldn't handle Evan by myself, but Carl and Evan have a great time. It was also the first time I was able to be home without Evan (so I deep cleaned his room).

Evan has been out in his wheelchair some more and is getting really good at it. Carl let him go in the backyard. Evan would just go back and forth while Carl sat in a chair and read.

This week Evan has a cold. So far it hasn't been bad at all. We are hoping that as he gets older he will be able to deal with colds better! God has definitely been merciful to us this week!

Carl and I agree we are entering a new phase with Evan. Yesterday he wanted to stand up. So, I held him up the best I could and then he wanted to walk over to his toys. I tried my best to make it seem like he was walking. Then he wanted to sit on the big potty and wash his hands in the sink. I knew I couldn't get him on the potty by myself, but I was determined to get him to the sink to let him feel the water. He loved it!! I think he is realizing he can't do things. Our hearts just break everytime he says he wants to do something he can't!! We are praying that God would give us the words to say as he makes these realizations.

Saturday, April 15, 2006 8:17 PM CDT

I wanted to write about our fun day today! The weather was absolutely beautiful so we took Evan out in his wheelchair for the first time. He had a great time! We may have to deal with some more discipline issues with the wheelchair because he wants to go off-road. Soon he will learn what he can and can't do. Right now he is just thrilled to have so much freedom! As you can see it is a HUGE chair. We will keep trying to get him onto the other ventilator so we can hang it on the handle of the wheelchair.

This evening we went to the park. The picture I included is of Evan in the "special needs" swing. I am so thankful there is a swing he can use. He loves it! Of course Andrew loved swinging too!

The other picture I posted is of Evan and his nurse, Bonnie, coloring Easter eggs. He made eggs for each one of us.

Evan has started saying some really cute phrases. Here are a few examples: "Aaww, come on!" "Maybe later" "Wait a minute, wait a minute". He keeps us laughing!

Hope you all have a happy Easter!! Christ is Risen!

Tuesday, March 28, 2006 10:25 AM CST

I just wanted to update you all on the state hearing we had last week. We felt like it went very well! This time we knew what to expect and could prepare a lot better than the last time. On our side was a caseworker, Carl and me. The state had 4 people on the phone presenting their case. Then there was a hearing officer who was tape recording the whole exchange. It was so intimidating, I was shaking the entire time. Carl did an excellent job keeping the focus right where it needed to be! He was a great "attorney"! The decision will be made by May 24th and so I will let you know what the outcome is. Thanks for praying!!

This past weekend we all went to Carl's parents' house. It was a four hour drive, we left at 8:30pm Thursday and Evan did not sleep at all. Needless to say, he was crying the last 45 minutes because he was so tired. That child has never slept in the car!! Aaahh!!

The weekend was a lot of fun! The boys loved playing with the cat (they aren't used to seeing an animal that close up). It was so good for Evan to be in a different environment for a change. He did so well!

Monday, March 13, 2006 8:44 PM CST

An update on Evan's nutrition . . . I was at Meijer a couple of weeks ago and found a Meijer brand soy drink for kids (comparable to Pediasure, but made with soy). I was so excited because I didn't know there was anything out there like it! The doctor said it would be fine to try and so right now we are doing half Isomil and half Soy Pediatric Drink. He is tolerating it really well! Thank you all for praying!

A few weekends ago I had the stomach flu. I was so careful and stayed up in my room for the whole day. If I went downstairs at all I wore a mask and gloves. Thankfully, no one else got sick!!

I enrolled Evan in a "preschool" for next fall. It is technically called a Mom's Day Out, but they have so much more than childcare. We took Evan with us on a tour of the school and he LOVED it. The program is one day a week at a church. Every week focuses on a different Bible story. They have arts and crafts, music and story time. Evan's nurse will go with him and he will be able to use his wheelchair.

One quick prayer request before I sign off. We have another State hearing for the Medicaid waiver on March 20. I am so tired of all this, but here we go again.

Sunday, February 19, 2006 3:53 PM CST

Hello everyone! We are having a great winter so far! No sickness since before Christmas!! Praise the Lord!

Evan surprises us everyday with what he is learning. Today in Sunday School, he said his books of the Old Testament up to 1 & 2 Chronicles. It is so cute when he says "Deuteronomy". The other day I asked him if he had obeyed me. He said no and then proceeded to quote the Bible verse, "Children obey your parents in the Lord for this is right." (He knows a lot of verses thanks to his favorite CD by Steve Green which he listens to over and over.)

The excitement of the last few weeks is that he got a computer! An anonymous donor provided money for a brand new laptop and an adaptive keyboard. He absolutely loves it and is so good with the mouse and clicking on what he wants. This definitely opens up a whole new world for him!

Our prayer request for him is his nutrition. He is still on Isomil (because he hasn't been able to tolerate Pediasure) and he is looking very thin to me recently. We need wisdom what to do going forward. Ideally, we would like to see him start to eat by mouth! That sure would be great!

Monday, January 30, 2006 8:55 PM CST

For those of you who are wondering, we still have not heard from Medicaid. I really thought we would have heard by now, but I guess not. To clarify a little . . . if we get put on the Transitions Waiver we will not lose nursing care (at least that's what they tell me). Anyway, I will let you all know when I get notified of their decision.

Evan got his electric wheelchair! He actually doesn't know we have it. I am afraid once he gets in it he will never want to get out. Our house right now is not good for riding around in a wheelchair. We are going to have to take him to an open space to let him practice first.

Monday, January 16, 2006 7:22 PM CST

I just wanted to update the Medicaid waiver situation. The nurse and the state worker came on Friday to do their assessment of Evan. They were both very nice and spent an hour and a half talking to me. The nurse's conclusion was, yes, he needs skilled nursing care, but because of the wording in the law she would have to recomend that he be in the lesser category. The rules say that in order to fit into the skilled nursing care level, the doctor has to have ordered 7 days a week of nursing care. Because Carl and I take care of him on the weekends and we aren't licensed professionals, then Evan doesn't qualify. The state worker who actually was on the team that came up with the law said he hadn't made a final decision yet. Anyways, even if Evan has to go the the Transition waiver, I was reassured over and over again that he would not lose his nursing care. I have been in contact with an attorney to see if we should continue to fight this or just let it go. We will be notified in the next couple of days what the final decision is and then we will have to decide whether we want to appeal it.

Another prayer request to mention. Evan's g-tube site (which has always looked great) now looks like it is infected. We really need to get on top of this because if his skin breaks down we are in trouble. With the gastric juices so close to the site, it is hard to get the skin to heal. I have a feeling with Evan there is always going to be something to pray about! Oh well, he's worth it! :)

The new thing Evan started doing over the weekend is identifying words that we write down. He will be reading in no time!!

Thursday, January 12, 2006 9:04 AM CST

All I can say about this whole Medicaid thing is "Aaahhh"! I feel entangled in a web of deception and bureaucracy. The night before our hearing (Tuesday night) I receive a phone call from the woman who made the decision to take us off the waiver. She informed me that the state wanted to send a nurse out to see if Evan really needed skilled nursing care. She wanted to know if we wanted to wait for the state hearing until the nurse came out. After asking a lot of questions (and feeling trapped because I didn't know what the right answer should be), I decided to go ahead with the hearing the next day since Carl had already worked it into his schedule. So we get there yesterday and they say, "Why are you here? Didn't someone call you and let you know they had reversed the decision until they send a nurse out." The woman did not say anything about reversing the decision or not having to be at the state hearing.

Then the nurse coming to evaluate Evan called yesterday afternoon. I made it known I am not going to play games. She said over and over that the new waiver they were going to put Evan on will not change his services. My problem is that it is called the "Transition waiver". Transition to what? Once they put us on this waiver we will never be able to go back to the other one. The reasons they are giving to put him on this new one is because they say he qualifies for MR/DD care and not skilled nursing care. Come on! The child is on a ventilator 24/7!

So, all this to say that the nurse and someone from the state will be coming tomorrow at 9am to see if Evan should have skilled nursing and therefore stay on the Ohio Homecare Waiver. Pray that God would give me the words (because it is like walking on eggshells). They will be looking for me to say the wrong thing. If the nurse says he doesn't need skilled nursing and fits in the MR/DD catagory then we have a right to another state hearing. But who wants to sit in front of a judge and try to fight against the state. Aaahhh!! This is not fun! Thanks for letting me vent!

Wednesday, January 4, 2006 11:13 AM CST

We had a great Christmas! Thankfully all of the illness is gone from our family! Because Evan had gotten so dehydrated from the flu, he got very constipated. To the point we had to go to the ER on Dec. 23rd to get him "cleaned out". The things that kid goes through! On Christmas day he had diarrhea because of the laxative they put him on. He sat in the church service with us that morning right next to the visitors. In the middle of the sermon he belted out, "Uh-oh, uh-oh poo-poo!". It was a little embarassing!

I hated taking off the pictures of the boys playing in the leaves! But I had to tell myself that we have changed seasons. The leaves are gone now (at least from the trees, those of you who drive by our house know they are not all gone from the yard :) So, I have added a couple of Christmas pictures.

If you remember, next week (Jan. 11) we have a state hearing. They want to take us off the Medicaid waiver that is currently paying for our nursing care. Once again they consider Evan "stable". How can a child hooked to a ventilator 24/7 be stable??!! I really dislike the politics of it all! Something tells me this will be an ongoing struggle. We will definitely need prayer!

Tuesday, December 20, 2005 8:13 PM CST

Evan is still not quite back to himself (although we are seeing little glimpses of his sense of humor and he slept for 5 hours straight last night). I really want to have the "Christmas spirit" and feel all warm and fuzzy this week, but so far it isn't happening. That is when I am reminded that Christmas is not about warm and fuzzy feelings. And thank goodness for that! Christmas is about a Savior being born into this world to save us from our sins. This truth brings hope to the entire world, warm fuzzies don't! I am struck by the importance of this truth when I think about a lady from our church. She was rushed to the hospital this morning because her family couldn't get her to wake up. As I write, the family has decided to take her off life support. Feeling the "Christmas spirit" is meaningless to the woman and her family, but the hope that this woman will be in heaven tonight means everything.

Thursday, December 15, 2005 4:17 PM CST

"When it rains it pours" - Part 2

Just an update on our crazy week. Yesterday morning at 5am Carl and I both woke up with the stomach flu. We were very sick! Then Evan got it about 2pm and was absolutely miserable. He was up all night vomitting and crying. The problem with Evan not getting enough fluid is that his secretions dry up. So after the nausea had subsided we were dealing with lungs full of sludge. He couldn't rest and neither could we. Today we weren't able to rest either because Andrew was not happy. I realized later that his first tooth is popping through. Isn't that great timing?

Evan is doing a little bit better. We are just trying to get him hydrated again. Please pray that we can get rest! After a day of being sick and a night of caring for Evan, we want to crash!

Tuesday, December 13, 2005 1:15 PM CST

The last couple of days the phrase "When it rains, it pours" has been so true. In fact, it is almost to the point of being comical. Yesterday Evan woke up with green snot all over his face. Andrew is still struggling with a cold too. Carl is in pain because of his shoulder surgery and overdoing it with our Christmas tree. My mom was gracious enough to come over and help me out with some housework. While I was on the phone she had to change Andrew's blowout diaper (diarrhea :(). Then I picked him up because he was whining and he vomitted all over me so much so that I had to jump right into the shower. Evan didn't take a nap and was a grump. Our Tuesday nurse had to cancel. Our night nurse has decided to take another job. Aaahh!! And all this two weeks before Christmas!

The one thing I have learned recently about God's mercy is that first it is new every morning (Lamentations 3:22-23). He provides just what we need for that day. It may not be the same thing we needed the day before. The other lesson I've learned is that we don't deserve anything. So whatever God gives us (like the last few nights of good sleep) we should be thankful for. And if He chooses to allow something that seems bad, that's ok. He has mercy on those He chooses. Afterall, He is in control.

Continue to pray that Evan's cold does not go into his lungs. So far it is just in his sinuses and we have hardly had to suction him. We can definitely deal with a simple head cold!

Friday, December 9, 2005 12:51 AM CST

Yesterday and today I am reminded of God's mercy. I don't know if this is the calm before a storm (see previous two entries) or if Evan's cold is getting better. Whatever the next few days hold, I do believe God has been merciful to us. We have all slept really well! Today Evan got up and, except for a sneeze here and there and an occasional drip of the nose, hardly has any symptoms of a cold. Thank you, God!! Carl and I were talking about how hard it would be for him to be in the hospital right now. Since Carl can't use his left arm because of surgery, I would have to spend the time with Evan in the hospital. That would wear me out physically and mentally.

A song that I sang in choir has come back to my mind, "In Your mercy You have shown me that You love me." I truly feel that today!

We appreciate your continued prayers that Evan heal completely!

Thursday, December 8, 2005 8:12 AM CST

Thanks to all of you who knew about our sickness and prayed for us last night (see previous journal entry)! We had a much better night! I really thought it was going to be rough, but I only woke up with Evan once and not at all with Andrew. Prayer really does work! I still don't know what's in store for the next couple of days since Evan is still pretty sick. Yesterday we gave him a decongestant for the first time. (We didn't want to give it to him before because we didn't want his lung secretions to get too thick) The doctor said to try it and see what happened. So far it has helped and his secretions aren't any thicker. Being able to take medicine has made a big difference!

Thanks again for praying!

Wednesday, December 7, 2005 2:56 PM CST

I feel like we have been coasting for the last few months. Everything has been going so well! Yesterday, however, things turned a little crazy. We definitely need prayers!! Carl got surgery on his shoulder yesterday and, although it was outpatient, felt very under the weather all day. He will be in a sling for awhile and so basically most of the care for the boys is up to me. Andrew has had a cold for a few days now, but yesterday it got even worse. On top of this, Evan came down with a cold too. Both of my boys have been miserable! Last night I only got about three hours of sleep. This week is going to be interesting! Thank you in advance for your prayers!

Monday, November 21, 2005 7:44 AM CST

It has been brought to my attention that I have not updated the website in a long time. Sorry!

Carl and I had a wonderful time at Pebble Beach a few weeks ago! What a beautiful part of the country! The only problem was the time zone. I don't feel like I caught up on any sleep because of the time change. They (Merrill Lynch) was trying to feed us these huge dinners at 8pm. That's 11pm Ohio time. All I wanted to do was go to bed.

The boys did great while we were gone!! Evan only cried a few times at night when he was overly tired. Other than that he had a lot of fun with his caregivers. Andrew had a few problems taking a bottle. The first day he refused to take any food. Finally, over the week he would increase what he took until he was up to an 8oz bottle.

Evan has had a good few weeks! As always, he is absorbing so much information. Yesterday we were talking about his nurses and I asked him what day Elaine comes. He said plainly, "Tuesday". Then he said that Wednesday came next and then Thursday. I had no idea he knew the days of the week.

We are so looking forward to being with family this Thanksgiving! It has been a long time since we've seen everyone.

Hope you all have a Happy Thanksgiving!!

Wednesday, October 19, 2005 9:58 AM CDT

Here is what Evan has been up to . . .
On Saturday we went and picked apples at an orchard. He had so much fun and it was a beautiful day! He has been telling everyone that he "picked apples with Conor". (Conor is his friend who is only 16 hours younger) It is our yearly tradition to go with our friends to pick "Suncrisp" apples. This is our 4th year.

Saturday night we had a bonfire and cooked marshmellows. Evan stayed out with us until 10pm. The more tired he got the more he showed off.

Monday our regular day nurse came back!! What a praise! It only took her about 6 weeks to feel well enough to come back. The doctors told her it may be 3 months. I feel like a new person now that I can spend some time out and about.

New Accomplishment for Evan!! Just a few minutes ago Evan was sitting on the floor playing with cars with his nurse. He fell over onto his side and then worked and worked, but got himself back up into a sitting position. That was the first time for that! I got it on video because I was so excited!!

Prayer Request: Carl and I are going to Pebble Beach in a few weeks. We need prayer that Evan will stay healthy! Yesterday I felt like he might be coming down with something. God knows our need to get away and I believe he is in control of Evan's health. I trust that He will do what is best, but I would appreciate your prayers. (Also pray that Andrew would take a bottle. Being all the way out in California makes it hard to come home to nurse him :)

Wednesday, October 12, 2005 9:35 AM CDT

Things are going well for us! Our nurse who had knee surgery is on the mend and would like to start working part-time next week! I have had a lot of other help recently just entertaining Evan so I can get out of the room and do something else.

Evan had surgery last week on his trach site. They removed the scar tissue that had built up around it. No problems other than they put the wrong size trach back in after the surgery. He was wearing a 4.5 Neo (which is for babies) and they put in a 4.5 pediatric. Not a huge deal. He is doing fine and so we will probably keep it. On the way home from the hospital, our external battery for Evan's ventilator stopped working and his "low battery" alarm started going off. Then we got into a major traffic jam. I had to crawl into the back seat with the resucitation (sp?) bag and wait for the ventilator to shut down. Thankfully it held on until we got into our driveway and then I bagged him until we got inside.

On Saturday we had a Garage Sale. It was really cold and dreary, but a few people still showed up and overall it was a success. Evan sat outside and said "hi" to people for a couple of hours.

Wednesday, September 28, 2005 2:33 PM CDT

A few new things with Evan . . .

I started feeding Andrew cereal and that prompted Evan to want a bowl and spoon to play with. So, I put vanilla yogurt in his dish and he spent quite a long time playing with it. He would put the yogurt on his spoon and put it on his tray. Every once in awhile he would put the spoon up to his mouth and taste a little. He was a mess afterwards, but I was really excited.

On Sunday we got to take the leftover box of donutholes home with us from church. Evan proudly carried them out to the car and held onto them in his carseat. We asked if we could have one. He opened up the box and handed us one and then another. Then he realized he had sugar on his fingers and touched it to his lips. Maybe this curiosity with food will turn into more! We continue to pray that way!

Evan continues to soak up knowledge. He now knows his phone number and what state he lives in. He also loves to spell Ohio. He will be in his bed during nap time and say O-H-I-O over and over.

He is also developing a sense of humor. I have included a picture of Evan with tape on his nose. One day I was giving him his bath. I looked down and he had a big smile and the tape roll on his nose. What a goofball!!

Monday, September 19, 2005 1:32 PM CDT

Last week was a long one, but a few exciting things happened. On Tuesday Evan got a new "big boy bed". He is done with sleeping in a crib! His new bed is pretty cool. It is a medical bed that raises four feet off the ground. The head and feet sections are also motorized. The nice thing is that it looks like real bed. I will take some pictures soon and post them so you can see what I mean. Where the crib used to be we put a couch so we can have a family room area.

We had all planned on going to Indianapolis this weekend for my 10 year high school reunion, but it seemed as if Evan was getting another cold. Friday night he acted really sick. He was having trouble breathing. Carl went down to suctioned and couldn't get through the trach. We knew something was very wrong. It became clear to us that we would have to change the trach. This was our first "emergency trach change". It went smoothly and when we looked at the old trach there was a HUGE mucous plug that would have very quickly blocked his entire airway. As soon as he got the new trach he felt completely better. So, thankfully, I don't think he has a cold afterall. At that point it was too late to pack all of his things to go to Indy. Carl stayed home with Evan and I took Andrew with me. It was nice to spend some alone time with Andrew!

Thursday, September 8, 2005 8:33 AM CDT

Well, here I am on my first day without a nurse. They still haven't found anyone to work Mondays, Thursdays and Fridays for the next 2-3 months. This morning I asked Evan if he needed something and he said that we wanted to go "bye-bye". Unfortunately we won't be doing that very often. I guess that is one of the hardest parts of not having a nurse. We have to stay in Evan's room all day. I so wish I could take him out to the park or to the zoo! Pray that God would give me the strength to not only take care of both boys, but also to really spend time teaching them. I figure if I have to spend three days a week in Evan's room with the boys, I might as well think of activities we can do together and use this as a teaching opportunity. Maybe Evan can learn to be potty trained during this time. We'll have to see.

Monday, August 29, 2005 5:01 PM CDT

We are finally over the hump!! Even last week when we got home from the hospital Evan wasn't completely better. Sunday night and Monday night we were up every two hours because he had plugs and couldn't breathe. Then on Tuesday and Wednesday nights his air leak from his trach was so bad that it was setting the alarm off on his ventilator. So, we were up every 20 minutes or so with that. Finally on Thursday we went to the hospital to get his trach changed (we knew Evan needed a bigger trach so the alarm would stop going off). The trach change went smoothly and he still has a big enough air leak so he can talk!! That was the one major thing I was concerned about. Also, when we took the old trach out and looked inside it had a mucous plug in it that partially blocked his airway. After getting that out Evan was like a new person! He felt so much better! The last few nights we have gotten sleep (it had been almost 3 weeks of no sleep)! I also got to get out of the house on Friday (it had been almost 3 weeks since I had run any errands).

We still need prayers for a nurse! Next Wednesday will be our regular nurse's last day. I realized while Evan was sick that I really need to be able to get out of the house! Otherwise I get a little crazy :). We know that God will bring the right person (if it is his will to even provide someone). If he chooses not to provide someone, then he will somehow give me the strength to do it on my own.

Sunday, August 21, 2005 10:13 AM CDT

Thank you for all your prayers! Evan is back to himself and we are heading home from the hospital today!! His chest tube was removed yesterday and everything looks good. He still requires a little bit of extra oxygen. We aren't really sure why, but we are able to take him home anyway.

He definitely feels better! He is saying "hi" to everyone who comes into the room. He has also learned some more of his medical terminology. Yesterday he was saying something that I couldn't understand. Finally, I realized he was asking for his "60cc syringe".

We still need prayer for a nurse! It is only a few weeks before our regular nurse gets surgery!

Wednesday, August 17, 2005 7:45 AM CDT

Thank you for all your prayers regarding Evan's cold. It turns out that we were dealing with more than just a cold. On Monday morning we took Evan to the ER because he just wasn't getting better. They did a chest x-ray and found out that there was a pneumo-thorax (sp?) (which is a hole in his lung that lets air escape into his chest cavity). Basically, a third of his left lung had collapsed. These can be very serious, but thankfully Evan was still stable. We waited in the ER for 9 hours before they were ready to insert a chest tube. We had been up since 4am that morning and were all exhausted. Besides that, they had drained Evan's stomach at 12pm and wouldn't let him have any thing to eat or drink until the surgery at 7pm. He was absolutely miserable!!!

We are two days into having the chest tube. It has been pretty painful for Evan so they have him on Morphine, Chlorohydrate (which is a sedative), Tylenol and Ibuprofen. I haven't been to the hospital yet today, but Carl said Evan had a really good night and was up watching his videos. Hopefully we can leave the hospital soon, but I will keep everyone updated! Thanks again for your prayers!

Friday, August 12, 2005 9:49 AM CDT

Update on Evan's illness: WE NEED PRAYER! Yesterday he woke up at 4:45am and it has been non-stop since then. It's 11am Friday and Evan has pretty much been up all night. He is absolutely miserable and we are absolutely exhausted! I don't know how he can still be awake! Anyway, at this point we need rest that only God can bring!

Thank you!

Tuesday, August 9, 2005 12:40 AM CDT

Hi! A couple of prayer requests to pass along. First, Evan has come down with a cold :(. So far it is only in his nose and his throat is sore, but we haven't had problems with his lungs yet. Hopefully this will be a mild cold and will pass quickly. Unfortunately we can't give him a decongestant because that will dry up his secretions in his lungs and make it hard to suction. So, just pray that we can get through this without too much trouble.

Second, Evan has surgery scheduled for Wednesday, August 17. It is to remove his scar tissue on his trach site (we got this same surgery done back in March). He will have to be admitted into the hospital for the day. Pray that he doesn't pick up anything while we are there!

Third, Evan's primary nurse who works with us 4 days a week is having knee replacement surgery in September. The doctor has advised that she be off work for two or three months. Pray that we can find someone to take her place and that she recovers quickly!!

Monday, July 25, 2005 8:19 PM CDT

Well, we returned from our weekend trip to New York today! Thanks to all you New Yorkers who pray for us regularly! You truly were an encouragement this weekend!

I guess I didn't realize how many people actually get on this site to check up on Evan. It was funny to be introduced to people for the first time and have them know all about you already.

Evan did great traveling! The hardest part for him was not getting naps (too many people to see). By Saturday night he had had enough and hid himself in my arms. Unfortunately, Carl's extended family (who had come Saturday night partly to celebrate Evan's birthday) didn't get to see his true colors.

It was Evan's 2nd birthday yesterday! At 10:16pm last night I thought about how Carl and I held our new baby and never could have imagined what the next two years would hold. I was made aware over the weekend one of the reasons God has allowed us to go through this. Many people told us what an encouragement Evan's story has been to them and how it has helped them deal with issues in their lives. God has given us a son with special needs, but in that he has also given us a ministry. Praise God for that!

Tuesday, July 19, 2005 8:29 PM CDT

I know most parents are proud of what their children can do, but this past week I have been shocked! Last Saturday Evan and I were playing with his magnetic letters and he told me what the letter "A" says. So, I thought I would ask him the other letters. Sure enough he knew what every letter of the alphabet said (including letters like "Q" and "W"). I had no idea he knew any of the letter sounds! He must have learned them from his "Brainy Baby" video.

Tonight I was singing "His Eye is on the Sparrow" (which is one of my favorites). I paused and he finished the phrase for me (not singing, but saying the word). So, I tested him and he knew the last word of every phrase. Then I sang a few other songs like "Jesus Loves Me" and "Jesus Loves the Little Children" and sure enough he knew the last words of all those phrases too.

Wow, ok, enough bragging! I will post a picture soon of when we put Evan in his kiddie pool. He loved it! For those of you who don't know, putting kids with trachs in a pool of water is a BIG NO-NO. I couldn't resist letting him get the experience. Don't worry we were right there the whole time!

Monday, July 4, 2005 3:07 PM CDT

Happy July 4th!!

I wanted to write a new journal entry so I could explain the new pictures. This morning we went to the 4th of July parade here in Hilliard. We decided to sit at the end of the parade route, but that meant it took 45 minutes for the parade to reach us. It was very hot and sticky!!

The first picture is of Evan when we first got there. The second one is when we left. He looks a little droopy by the end. One of the paramedics in the parade was talking to all the kids as he walked by. After talking to Evan he ran up a little ways, got a flag and brought it back especially for Evan. I don't know if he recognized him from the one time we had to call 911. He was probably just being nice.

Andrew was getting hot and hungry while we were there. He especially wasn't happy when the guns were fired right in front of us. He screamed so loudly. Everyone was turning around looking at him.

Overall we had fun. Evan even got to see airplanes for the first time (they were flying overhead with advertisements). He was calling them "earrings". I guess that is what it sounded like when we said "airplanes".

Sunday, July 3, 2005 11:55 AM CDT

Alright, I have a few minutes of peace to update the website.

Here's what's new:

Last week we took both boys to see the pediatrician. Evan weighed 30lbs and was 35 inches. It had been a long time since we had taken Evan to see the pediatrician. So, we talked about getting up-to-date on his immunizations. He will love that. :(

Evan's new found talent is singing. I didn't realize he knew as many songs as he did until one night when I was rocking him to sleep. As I sang he would finish the phrases for me. While he is in bed trying to go to sleep, we hear him singing to himself.

Evan is also speaking in many more two-word phrases. Last night it was, "No (fill-in-the-blank)". Everything was no, but he was laughing while he said it. Suddenly he realized he could say, "No suction" or "No high chair" and he was pretty proud of himself.

Andrew weighed in at 10lbs 11oz and 23 inches. A lady at the dentist's office on Monday said, "He has a distinct look, doesn't he?" I 'm not sure what that is supposed to mean, but it doesn't sound good. You just have to laugh those things off (and write them in the baby book:). Andrew has been smiling more and he laughed yesterday! The really hard thing, though, is that he HATES his carseat. It seems everywhere we go he screams. This is going to make our trip to New York a lot of fun!

As soon as I get the new pictures developed (yes, I used our "old-fashioned" camera this time), then I will post some.

Happy 4th of July!!

Tuesday, June 14, 2005 8:00 AM CDT

Andrew is three weeks old and is already getting so big! Evan is more accustomed to having a baby brother, but will still cry when Andrew cries.

A few updates on Evan:
- Yesterday during his speech therapy, the therapist got him to say the "D" and "P" sounds. He had never said them before. Now he can say "da-da" instead of "na-na".
-Over Memorial weekend we got him a wagon. It has seats that flip up to support him and straps to hold him in. His ventilator fits in with him and a little trailer holds his battery and suction machine. He loves it!! He and Carl can go for walks by themselves and do yardwork together.
- The surgery we had scheduled for tomorrow to remove scar tissue from around Evan's trach site has been rescheduled for August. Things are a little too crazy for us right now!

Tuesday, May 24, 2005 2:33 PM CDT

As of Sunday, May 22 at 10:03am Evan is a big brother! I went into labor at 3am, got to the hospital at 6am and was already dialated to 9cm. All I had to do was push the baby out. Unfortunately, it wasn't that easy. The baby's head got stuck. Two and a half hours and an epidural later, Andrew Kenyon was born. He weighed in at 7lbs. 15oz. and 21 inches. For all of you who were praying, this was definitely an answer. One of the first symptoms of SMARD1 is low birthweight. Evan, who was born full term, only weighed 5lbs. 14oz. and was 19 inches long. The other thing we prayed for was a good cry. Andrew definitely showed us he could do that! We began to wonder if we should have prayed for a good cry that was used sparingly. Although we won't know for sure if Andrew has SMARD1 for a few months, we are confident that God doesn't make any mistakes and in that we can have peace.

We came home today and Evan has been ok with Andrew. I'm not sure, however, if he realizes this baby is here to stay. I think he would rather ignore him.

Check out the pictures of Andrew Kenyon!!

Friday, May 20, 2005 7:38 AM CDT

Yes, today is my due date and still no baby. If the baby doesn't come by next Friday, I will be induced. I am ready to get this show on the road!!

Evan absolutely amazed us yesterday. He and I were playing and I started to say the alphabet with him. As soon as I said "A" he went on to say the rest of the letters in order. He missed a few, but I had no idea he knew what he did. Later Evan said it over the phone to Carl, my mom and Carl's parents. His intelligence continues to amaze us!!

We will keep you updated on the baby and Evan!! A prayer request would be that Evan would stay healthy. I have been struggling with a sore throat and stuffy nose. Hopefully it is just allergies, but I have still been wearing a mask around Evan. I can't imagine having a newborn and Evan being sick at the same time. Talk about NO SLEEP!

Saturday, May 7, 2005 1:40 PM CDT

Still no baby. I know God's timing will be perfect, but I have told Him that this coming week will not work very well. What 9-month pregnant woman in her right mind would want to deliver later? Well, with a child like Evan things get a little more complicated. Our regular day nurse is on vacation and won't get back until the 15th. It isn't like I can run Evan over to a friend's house if I go into labor. Also, my doctor who I want to deliver this baby is on vacation. God knows all this and I'm sure He isn't worried. So why should I be?

Carl and I took Evan to the zoo yesterday. It was such an awesome day and we decided we may not get out much in the next few weeks. Evan had a good time looking at the animals he sees in his videos and books. Check out the photos from our trip!

If you remember, pray for me to have strength for the upcoming week as I care for Evan and try to get some rest before the baby.

Wednesday, April 20, 2005 4:08 PM CDT

I just wanted to let everyone know that the baby has turned! Thank you to all you who were praying! On Sunday morning at church and Sunday night at Bible study, my church prayed and sure enough Sunday night as soon as Bible study was over I knew that the baby had gone head down. My ultrasound on Tuesday proved it! Also, the ultrasound showed that this baby weighs 5lbs 14oz at 35 weeks. Evan weighed 5lbs 14oz when he was born at 39 weeks. This is a very good indicator that the baby is ok. Exactly a month until my due date! I'll keep you posted!

Saturday, April 16, 2005 11:20 AM CDT

Thank you to all who have been praying for Evan to eat!! He is doing a really good job! Yesterday he ate 3/4 of a jar of babyfood peas. Near the end I would ask him if he wanted more. He would nod his head excitedly and open his mouth. This is a HUGE improvement. I fed him an apple and banana mixture this morning. He has never liked fruit, but this time he ate a lot of it. Texture, however, is still an issue. I tried feeding him a baby food lasagna with noodles in it and he managed to work every noodle out of his mouth and wipe it away with his hand.

Although he is no where near getting his feeding tube removed, we are very encouraged by his progress! Thank you again for keeping this in your prayers!!

Saturday, April 9, 2005 12:24 AM CDT

The past couple of weeks have been rough! The doctor thinks that Evan has had the respiratory flu. He felt miserable for a week and even this past week when he felt better his oxygen levels were really low. He finally got off of oxygen yesterday (usually he is on room air)! Still, he has a lot of secretions that need to be suctioned out. Two nights ago we were up most of the night because his oxygen levels droppped three times. When we got him calmed down he didn't want to go back to sleep. Last night was a lot better he dropped once and we suctioned out the THICKEST secretions I have ever seen. I guess it is like any of us who have a cold. At the end the mucous gets really thick. I am hoping we can get him out of the house this weekend. It is absolutely beautiful here!!

News of the pregnancy . . . The baby is transverse. So, in a couple of weeks I am going to get another ultrasound. If it hasn't moved, I will have to go in to Labor and Delivery and get it turned. And yes, they say this is as uncomfortable as it sounds. Other than that, the baby looks good. At 30 weeks it was in the 60th percentile for weight. The doctor says if it stays that way it will be an 8lb baby. At 20 weeks, I think Evan was in the 10th percentile.

If you live in Central Ohio, get outside!! :) Hopefully we will!

Thursday, March 31, 2005 7:14 AM CST

We had a wonderful Easter weekend with all of Carl's family! Evan loved watching his cousins run around and play. Easter Day, however, was not as much fun. Evan woke up at 1am crying out in pain. We came to the conclusion that he had a sore throat and did want to swallow. He would gag and then just cry. So, this week we have been dealing with a cold :(. Yesterday morning he was up at 4am and hardly got any sleep the whole day. He was just miserable. He was on my lap all day moaning and coughing. This morning he "slept in" until 6am. I'm hoping today is a better day!

Needless to say, we could use your prayers. The first request is that we will be able to stay out of the hospital. Also, we need prayer for rest. It has been a long, tiring week (especially with me being in the last weeks of pregnancy). Carl has had a lot going on at work and getting up at 4am isn't good for him either.

Thanks so much for your continued prayer support! God has truly blessed us with a support group of family, friends and people we don't even know!

Sunday, March 20, 2005 3:09 PM CST

I wanted to update you all on the procedure Evan had on Friday. Everything went really smoothly! We arrived at the hospital at 6:30am and got checked into a room. He was put on the hospital's ventilator and then we waited to be called down for surgery. Finally at 10:30am they were ready for us. We took him down and talked with the anesthesiologist that would be in charge of his breathing during the procedure. He made me feel better when he said that they would put a breathing tube down his nose while the trach was out. Evan was given a sedative before we handed him over to the surgery nurses. I was glad that he wasn't crying when they took him.

The procedure lasted an hour and then he was brought back to the room. We spent about 4 hours waiting for the anesthesia to wear off so we could go home. It was a long day, but everything went great!! Thanks for praying!!

Thursday, March 17, 2005 7:28 AM CST

I wanted to let everyone know that Evan is going to have a procedure done tomorrow at Children's Hospital. It will be an outpatient surgery to remove scar tissue that has built up around his trach site. Although it will be a short procedure, I still have many concerns and so I am asking that you pray for him (and me). Because they will have to take out his trach, I have obvious concerns about his oxygen levels. He also won't be allowed to receive his normal feedings until afterwards. For a trached kid this can mean that his secretions will thicken up and then we will have to deal with mucous plugs. I have to continue to pray and trust that God will take care of Evan.

I don't know what time the surgery will be. We have to be at the hospital at 6am and wait for the surgeon to be available. My hope is that we can get in and get it over with as early as possible.

We would appreciate your prayers if you get this before tomorrow! Thanks!

Wednesday, March 2, 2005 4:21 PM CST

Evan finally got a haircut as you can see by his new pictures! Carl buzzed all of Evan's curls right off! He looks like such a big boy!

The Speech Therapist came yesterday and was so impressed with Evan's growing vocabulary. He said his first two word phrase for her. He said, "Mo Bubba" which means, "More Bubbles". We just need to keep working on sounds like D, T, K and G. I don't think it will be too much of a problem because of his determination.

He continues to roll onto his tummy and push up with his arms. This is a really good thing, but we feel like we have to be right next to him when he does this because his tubing gets tangled and he ends up pulling something off. Of course his favorite time to roll over is when he is supposed to be going to bed. We are constantly running into his room, reattaching his vent and rolling him back over.

Well, I have to run. Evan's video is over and he is getting into things he is not supposed to. Enjoy the new pictures!

Wednesday, February 16, 2005 8:09 AM CST

I apologize to those of you who check this site often only to find the same journal entry for the last month! My mom made me aware that I have not written anything new for quite some time.

Evan has been cracking us up recently! However, we realize some of his antics might not be too cute once the new baby is born. His new thing is to pretend to cough. He will point to the suction machine and when asked if he needs suctioning, he nods his head. Sometimes he even does the sign for please. We have to determine whether he really needs suctioning or if he just wants attention. The first time he tried to trick me was when I was attempting to feed him baby food. I guess suctioning seemed like the better option at the moment.

Last night he came up with something he thought was so funny. He started calling me "Mi-Mi" instead of "Ma-Ma". Everytime he said it he would laughed. When I walked into the room he said "Hi Mi-Mi" and then almost fell off Carl's lap from laughing so hard.

These antics make me wonder what he will come up with when the baby is born. I have a strange feeling it will involve pulling things off that need to be connected (ie vent, g-tube). I have started to pray for wisdom on how to make Evan feel special and give him the attention he needs. I realize all parents who have their second child must deal with these feelings, but with Evan it will be a little different. There will be many times I need to leave the house and will take the baby with me, but Evan won't be able to go. He will also have to watch the baby learn to crawl and walk. Right now he thinks his life is normal because he has nothing to compare it with. That will change when the baby born. If you have any suggestions on helping Evan understand how special he is, feel free to e-mail them to me!!

Monday, January 17, 2005 1:19 PM CST

As I write this, Evan is being such a stinker! The nurse and I tried to put him down for a nap, but he pulled his vent off three times in three different places! He rolled around for 45 minutes talking to himself and getting into trouble. Finally, we gave up and are letting him play.

Today I finally gave him a haircut! The picture I posted shows how badly he needed a cut!

This weekend he has been trying to jabber in sentences. During church yesterday his favorite thing to say was, "No,no,no". Which is always a bit embarrassing when it is a communion service!

It is getting harder for me to hold Evan! I'm not sure what I'll do as May 20th gets closer. Yesterday leaving church I had to literally throw him into his car seat. We are talking about getting a smaller ventilator. That way I can carry it and Carl can carry Evan. We'll see.

On Saturday I had Evan on my lap and the baby kicked him! Evan sat up and looked at me like, "What was that?!".

Well, that's about all for now!

Wednesday, January 5, 2005 4:12 PM CST

First of all, I want to let you know that we got an e-mail from the doctor in Germany. He confirmed that Evan indeed has SMARD1. They don't have the complete picture yet. I'm not sure what that means, but I'm thinking that they aren't sure yet if Carl and I are both carriers. They should know everything by the end of this month. Although the diagnosis seems so final, it doesn't change Evan. He is who he has always been. We also know that God is not hindered by a diagnosis. He could still heal Evan if He wanted to.

The next news I have is happy news! I told you to stay tuned for pictures of our new arrival and here they are! We went to see a perinatologist who did a Level 2 ultrasound to make sure everything looked ok. He said the baby looks great! There are not a whole lot of clues at this point in the pregnancy that could determine whether it has SMARD1, but it was still nice to know everything looks good so far. The baby is due to arrive around May 20!

Monday, January 3, 2005 12:52 AM CST

Hello Everyone!
I know it has been awhile since I have written. The holidays were a crazy time for us as I'm sure they were for you all too.

We had a great Christmas and New Year's this year (as opposed to being in ICU last year)! Carl's parents came down for the weekend from Northern Indiana. Their ride in was a little rocky. For those of you who don't live in Ohio, we had a HUGE snowstorm the Wednesday and Thursday before Christmas. On Christmas day, my parents and brother were able to dig themselves out of their driveway and join us. Evan had a great time being the center of attention!

Speaking of Evan . . . he has been so much fun lately! He is learning to communicate in the cutest ways. He will nod his head yes and no to about any question we ask him and most times he knows exactly what we are asking. Last night I was talking to my mom on the phone and he kept on reaching for the phone. I asked him if he wanted to talk to grandma and he nodded yes. When I put it up to his ear he said, "Hi". Then he just kept saying hi while I was talking. His new favorite word is "Noah". He will say it to let us know he wants to watch his "Baby Noah" video (basically, he says it all the time).

I haven't heard anything from Kevin and Erin (the ones who lost their little boy). I told them to give us a call when they were ready. I expect to hear from them sometime in the next couple of weeks. Thanks for all your prayers for them!!

Come back on Wednesday for pictures of the new addition to our family! :)

Friday, December 17, 2004 3:38 PM CST

I am writing tonight with a heavy heart and a request for you to pray for our friends. Last year while Evan was at Children's Hospital, we met Kevin, Erin and their little boy, Tyler (just a month older than Evan). Their ICU room was right across from ours and we would make a point to stop in there as often as possible. Tyler ended up being in the hospital longer than Evan. When they finally did go home he went with a trach, ventilator and g-tube just like us. We have kept in contact with them and are able to talk about all the issues related to doctors, nurses, medical equipment, suctioning and most frustrating of all . . . no diagnosis. Tyler has had to deal with more; seizures, mild brain damage from lack of oxygen and heart problems. Nonetheless, Erin and Kevin loved and cared for him no matter what.

I just got a call this afternoon that Tyler passed away last night. On Tuesday his heart had suddenly gotten weak and there was nothing that could be done. This has hit incredibly close to home for Carl and I. I have been cherishing the moments I have to cuddle with Evan because we don't know the future. I am thankful that we serve a God who knows the future and is with us no matter what.

Carl and I are praying for a way to minister to Kevin and Erin during this time. As far as we know, they are not Christians and we want to be open to God's leading in this area.

Thank you for your prayers!

Tuesday, December 7, 2004 8:52 AM CST

Yesterday Carl sent the information about SMA-RD1 to the new doctor we saw last week. He is a research doctor who is working with gene therapy as it relates to the Muscular Distrophy family (this includes SMA). He was not familiar with SMA-RD1, which was a little surprising. After reading the article and looking at Evan's muscle and nerve biopsy results from the Cleveland Clinic, he agreed that is matched up. So, in the course of 24 hours, this doctor has read the article, the biopsy and contacted the doctor in Germany that is doing our genetic testing. We were really encouraged that he is acting so quickly. He found out that the results of the blood tests will be available in 2 or 3 weeks. They said they have 5 more things to test (whatever that means).

We are hoping that this doctor will take us under his wing as a research project. We have been told that he chooses one case a year to really study. I think that this is interesting to him because it is something he is not familiar with.

I keep reminding myself that God is in control no matter what!!

Friday, December 3, 2004 10:10 AM CST

I hope everyone had a good Thanksgiving! We ended up going to Akron from Wednesday until Saturday. It was our first time to spend the night somewhere with Evan. The night we arrived was a little crazy. Evan needed to be suctioned for about 3 hours. Thankfully, things got better over the next couple of days. Even though Evan wasn't quite up to par, it was really nice to spend time with family!

Yesterday was a busy day. I finally gave him a haircut!! He needed one so badly!! He also stood up in his piece of equipment called a "stander". It wraps up his legs and waist to support him. He loves to stand!

Good news!! We were approved for the Medicaid waiver! This will make life so much easier. Thank you to all who were praying!

Wednesday, November 24, 2004 9:02 AM CST

Well, we just got back from a week in the hospital! They thought Evan had pneumonia, but it turned out to be a cold with a trach infection on top. He was pretty sick for awhile and is still requiring oxygen, but he is back to charming us all.

He came home with a PICC line which is a line that goes into his arm and all the way close to his heart. We give him his antibiotics through this. It has been very overwhelming because we have to give them every six hours around the clock. Everything has to be done so carefully so that we don't cause an infection.

At least we are out of the hospital for the holidays (unlike last year)! Happy Thanksgiving everyone!!

Saturday, November 13, 2004 6:28 PM CST

I wanted to thank you all for your prayers! We have definitely felt them! Although Evan's cold isn't gone, he was a lot better today. He went to bed last night at 6pm and slept until 1:30am. When he got up we suctioned quite a bit for about an hour and then put him back to bed. He slept until 7am. So, Carl and I were able to catch up on our sleep too.

Evan was almost back to his normal, happy self today. He played with his toys, watched a few videos and then took a 3 hour nap. The only concern we had all day is that he was having trouble keeping his oxygen levels up where they should be. The doctor said that as long as he wasn't stressing or upset, he probably just needed a little extra support. So, for right now we are going to keep him out of the hospital!

Thanks again for all your prayers!

Friday, November 12, 2004 10:58 AM CST

This is going to be a quick update because I am on my way to lie down for a bit.

Evan has been really sick the last few days with what we think is the cold Carl and I both have. Needless to say we have only gotten a couple of hours of sleep within the last 32 hours. Evan has a fever, a runny nose and lots of secretions that need to be suctioned out. This is the first cold he has had since last October (before we went to the hospital). I don't think he knows how to handle the runny nose. Basically, he is miserable. He won't lie down and sleep, but instead wants to be held all the time. A couple of times we have had to squirt saline into his lungs to loosen the mucous. Of course he panics at that and his oxygen levels drop. Unfortunately it is something we have to do.

All this to say that we would appreciate your prayers (especially if you wake up in the middle of the night)! Thanks so much!

Tuesday, November 9, 2004 11:21 AM CST

I thought I would update everyone on our "exciting" weekend. On Saturday Evan got up at 5:30am and didn't seem comfortable. His heartrate was high and he couldn't relax. During the day he had trouble breathing and whenever we would lay him down to change his diaper, he would get very upset and his oxygen levels would drop. The only thing that would calm him down was watching his movies.

Finally, after dealing with this all day we began to wonder if there was something else going on that needed to be looked at. So, we called the doctor and she wanted to see us in the ER. Thankfully, we took the oxygen tank with us in the car because he got very upset. Once we arrived, he had almost fallen asleep and so we decided just to carry him and his vent into the hospital. By the time we reached the check-in counter he had gotten very upset and turned gray. We ran up to the nurses station and said that we needed oxygen right away. We got him into a critical care room where they hooked him up to oxygen and a bunch of monitors. Over the course of four hours they did 6 x-rays and drew blood (all of which did not make Evan very happy). While we were waiting for the results, Evan fell asleep and seemed to be doing fine. All the tests and x-rays came back fine, so we considered just taking him home. The doctor insisted we stay overnight and so they moved us up to his old room (from when we "lived" at the hospital). On the way up to the room, he again turned gray and by the time we got there his oxygen levels were at 50%. It was a good thing we stayed at the hospital!

While getting him settled in his room, we suctioned out some thick secretions which could have been part of the problem. Finally at 1am he fell asleep and when he woke up the Sunday morning he was back to his normal, happy self. We were able to go home at 5 in the evening. They still aren't sure what caused this, but I have a feeling he was having a reaction to the new formula we were trying to switch him to. Maybe it was giving him stomach pain or heartburn and that made him upset causing his lungs to tighten up. We may never know, but thankfully he is fine now. It definitely was a scary time!

Tuesday, October 26, 2004 1:21 PM CDT

We have had a rough few days! The doctors are switching Evan from Isomil to Pediasure. He is not tolerating the switch at all! We don't know if it is the milk base (Isomil is soy based) or if it is the extra fiber that is added. Anyway, he cried for an hour last night and acted like his stomach hurt. He was also having some trouble breathing (maybe because he was so upset). This morning he woke up at 5am and was very uncomfortable. He cries everytime we lay him down and so we had to do all his care while I was holding him.

We put him back on Isomil today until they can try something else. He already seems to feel better! Thanks again for your prayers!

This is an encouraging verse I read today:
"For the eyes of the Lord range throughout the earth to strengthen those whose hearts are fully committed to him." 2Chronicles 16:9

Monday, October 18, 2004 9:41 AM CDT

Wow, it has been a long time since I have written! Carl and I just got back from a vacation in Florida (another one paid for by Merrill Lynch :). We had a great, relaxing time! Carl's sister, Ann, and their parents came to stay with Evan. He was well taken care of and didn't have any problems!! I know Ann was probably glad to get home and sleep. Both Friday and Saturday nights a night nurse didn't show up. So, she had to sleep in Evan's room and I'm sure she slept with one eye open.

An update on Medicaid . . . We have gotten a caseworker who is determined to get us the waiver. She can't control the decision, but she knows the lingo and who to talk to.

Tuesday, October 5, 2004 1:52 PM CDT

Thank you for all the encouraging words regarding Medicaid! We really appreciate your support!

Evan has been doing so well! He is growing up so fast. It is exciting to see him learn to communicate with us. Here are some examples:
-I was explaining to him on Friday that Daddy was going to have a long day and Evan wouldn't see him until Saturday. Evan said, "Na-na (which means Dada), No-no". I'd like to think he understood what I was saying!
-He was sitting in his chair and pointed at the tray that fits onto his tray (usually he doesn't want it on). The nurse asked if he wanted the tray and he nodded. Then he lifted his arms up so she could put it on.
-Last night I asked him if he was tired and he started rubbing his eyes. Now whenever I ask him if he's tired, he rubs his eyes.
-I was trying to get him to say some different words and so I asked if he could say "Evan". He clapped his hands together. This is because we made a rhyme up to his name and it required him to clap.

Make sure you look at his most recent pictures!! You can see how grown up he looks!!

Tuesday, September 28, 2004 12:44 AM CDT

Yesterday's hearing for the Medicaid Waiver was one of the most frustrating things I have been through! Basically Evan doesn't qualify because he is considered stable (how can a child on a vent be stable?). Although there is a legal definition of stable, they didn't have it in front of them and so we didn't know how to make a case that they couldn't even define. We gave all our evidence and afterwards the hearing "judge" said that all we said was irrelevant because we had turned in our request for a hearing late and therefore she was going to uphold the denial. So, the whole time she knew she was going to deny us, but she waited until the very end to tell us. I was so emotionally overwhelmed by the end that I was in tears.

I guess all this to say that we have to start all over again in the process by filling out the 20 page application. Hopefully the insurance will continue to cover us while we wait for the next verdict.

I have been reading in Luke and yesterday just happened to be in the chapter that talks about not worrying. God has taken care of us this far and I know he will continue!!

Thursday, September 23, 2004 7:52 AM CDT

We finally got the blood drawn yesterday! It feels good to have done our part. We are praying that the samples reach Germany without any problems! Getting the blood from Evan was rough. They had to stick him twice and it took at least five minutes to get the 11ccs of blood they needed. He got so mad and upset that his little body was trembling. I think he was just as upset about being held down as he was about being stuck. Thankfully he didn't have any respiratory distress! And although it took awhile for him to calm down afterwards, once he did he went back to his happy self. It must have worn him out because he slept for 12 and 1/2 hours last night!

Evan got a haircut yesterday! Mimi cut it a lot shorter this time and he looks like such a big boy!! We will have to take some pictures soon!

Please continue to pray for our hearing on Monday for Medicaid! Thanks!

Wednesday, September 15, 2004 1:37 PM CDT

Here is an update of what's going on with us:

On September 22 at 4pm, all three of us are getting our blood drawn for the genetic test in Germany. I am not looking forward to watching Evan get his blood taken! The results won't be back for at least a couple of months (I wouldn't be surprised if it takes six months).

On September 27 at 2pm, we have a hearing for Medicaid. For those of you who don't know we got denied Medicaid when we applied for the waiver (that waives the financial aspect and only looks at medical need). No one can believe that we got denied because Evan is on a ventilator. At the hearing the caseworker will present why Evan got denied and we present why he shouldn't have. We are able to bring witnesses (one of whom will be Evan) and can hire an attorney (I don't think we will do this).

Your prayers on these two things would be great! Thanks!

Thursday, September 9, 2004 9:26 AM CDT

Evan has had two great nights in a row!! We have rearranged the night nurse's location in order to make it darker and quieter in Evan's room. We move the glider right outside Evan's door. The nurse has the video monitor so she can watch him and from where she sits she can see his oxygen and heart rate monitor. This has worked out wonderfully! The last two nights Evan has slept for 12 hours straight! A definite answer to prayer!!

Thursday, September 2, 2004 8:54 AM CDT

Evan has been so happy the last few days!! He is still waking up early to be suctioned (5am this morning), but I think we have passed the worst. Yesterday we had a doctor's appointment with the neurologist. She was very pleased that he has maintained the muscle strength he does have. She also referred us to a clinic with a doctor that specializes in SMA. It will be good to talk with him.

We are making progress in getting the Germany test done. We have filled out the paper work and now just need to get the blood drawn.

A prayer request we have is for nursing care. We were just informed that the homecare company we use during the day is not in our insurance's network. Therefore we are being billed since February. If we can't get this worked out we are going to have to change homecare companies. I love the nurses we have now and they know Evan! It would be sad to lose them!

Oh ya, I forgot to say that this morning I let Evan play in bed while I went to get a bowl of cereal. When I came back he was swinging his g-tube (that's usually connected to his stomach) over his head. He is such a stinker!! :)

Monday, August 30, 2004 9:58 AM CDT

We had a rough weekend. Evan has had so many secretions. I don't know if it is because of his teeth or if he has a cold. Both Saturday and Sunday morning he was up at 5am with mucous plugs. These are not fun because his oxygen drops so fast. On Sunday morning we spent 3 hours suctioning him every few minutes. I felt so badly for Evan! They say that being suctioned feels like the wind being knocked out of you. He is such a trooper! During the days we would have to suction a lot too, but Evan just continued to smile and act like nothing was wrong.

This morning he slept until 7:30am and the suctioning wasn't nearly as bad. Maybe he is getting over whatever was causing his increased secretions!!

Friday, August 27, 2004 8:51 AM CDT

We have returned from our cruise! We had a great time! The weather was nice for most of the trip. On Nassau, however, it poured. In fact, it rained so much the streets and sidewalks flooded. Of course we got caught in it and had to run through the streets in knee-high water to get back to the boat. That was an adventure!

Evan did great at home! Ann, Carl's sister, did an awesome job taking care of him! Some of the nights were rough (his oxygen dropped a few times), but they made it through! When Carl and I got home yesterday, I don't think Evan remembered us (or else he was mad at us). Twice I reached out to pick him up and he shook his head "no". He did the same to Carl. Finally, he has warmed up to us again.

We were surprised to see Evan has so many new teeth! He has about 5 more teeth than when we left (including a molar). I think this is causing him to not feel very good. He has had a lot more secretions and has slept more than usual.

Thank you so much for all your prayers while we were gone! We really did feel at peace about being away!

Friday, August 20, 2004 9:27 AM CDT

Thank you all for your continued prayers for our trip! We definitely need them! Two nights ago Evan woke up at 11pm and had to be suctioned. Then at 3am a storm hit and woke him up. He was up until 5am. Carl and I didn't get much sleep that night. Pray specifically that Evan would not have any issues at night while we are gone!

We are looking forward to getting away for awhile! Hopefully we won't sleep the whole trip :)!

Monday, August 16, 2004 9:16 AM CDT

We had another power outage Saturday night (for seemingly no reason). Carl and I were up with Evan for the whole two hours. He knows something isn't right when the power goes out! Thankfully these kind of long nights are happening less often.

Yesterday we went to the park. Evan went down the slide for the first time (unfortunately we left our camera in the car). He had a great time!

Carl and I have a huge prayer request! This Sunday we are leaving for a Disney cruise. Evan is going to stay home with Carl's sister (who is a nurse) and with our regular nurses. Although we know he is in good hands, there is still a bit of anxiety leaving him. Pray that Evan would not have any problems and the equipment would work as it should! Pray also that Carl and I would be able to relax and enjoy our vacation! Thanks so much!

Wednesday, August 11, 2004 2:46 PM CDT

Well, we just returned from the hospital. The fluoroscopy only took about 5 minutes. From what we saw there is still no movement. Thank you all so much for your prayers!

I know Evan's diaphragm is still paralyzed for a reason. God has created Evan for a special purpose and I believe that, at least for right now, His purpose is best accomplished with Evan the way he is. God led me to this verse last night. It is refering to the children of Israel, but I applied it to Evan.

"Concerning things to come, do you question me about my children, or give me orders about the work of my hands? It is I who made the earth and created mankind upon it. My own hands strectched out the heavens; I marshaled their starry hosts." Isaiah 45:13

We will continue to give God glory for Evan's life! He is one special kid! Thanks again for lifting us up in prayer!!

Monday, August 9, 2004 9:21 AM CDT

Evan had a great weekend! He had the attention of both sets of grandparents! Carl's parents came down on Saturday and stayed until Sunday and my parents came for the day on Sunday. Evan just loved being the center of everything. It was also nice because on both Saturday and Sunday he took 3 and 1/2 hour naps!

Carl's parents were holding Evan in his room and I walked in. They asked him who I was and he said, "Mama". That warmed my heart!! :)

Continue to pray for Wednesday's test! We know that whatever God chooses will fit into His perfect plan!

Tuesday, August 3, 2004 7:14 PM CDT

The last few days have been a little rougher. Two of Evan's bottom teeth have popped through (one just the other night). Because of this he has been a bit cranky and hasn't slept as well. Thankfully, I think this is it for at least a week or two. He now has a total of 8 teeth!

I wanted to let everyone know that Evan is scheduled to get a flouroscopy at 2:20pm on August 11th to see if there is any movement in his diaphragm. We are asking that people pray that the doctors will see some improvement! Because I am curious to know how many people are praying for Evan and I know it will be an encouragement to us, I am asking that those who will pray about the appointment on August 11th let us know in the guestbook. Thanks!

Friday, July 30, 2004 6:38 AM CDT

The last couple of days have been great! On Wednesday morning we went and visited Carl's work downtown. It had been a while since his co-workers had seen Evan. Then we went to a doctor's appointment. This was a routine surgery appointment to check his trach and g-tube site. Everything looks great! After this we went up to the hospital floors we lived on and said hi to all the nurses and doctors. It was a lot of fun, but Evan got so tired! He came home and took a long nap.

Yesterday, Evan did such a good job eating by mouth! I was so excited! He acted like he even wanted to eat! This is definitely an answer to prayer!

Monday, July 26, 2004 8:48 AM CDT

I am finally going to finish a summary of Evan's first year.

In mid January we went to Cleveland Clinic for some more tests and a second opinion. The doctors there were also confused and so we left after a week with still no answers.

On February 17, they allowed us to take Evan home. We had been in the hospital for exactly 3 months. I was very nervous bringing him home! What if he crashed at home? What would I do? Thankfully, we have great nurses that are here 16 hours a day during the week and 8 hours over the weekend. I felt a lot more comfortable with someone else around.

Since coming home we have had a few scary moments, but God has really protected Evan! I feel like we are in a routine and am more comfortable with his care. That has been an answer to prayer!

We celebrated Evan's first birthday on Saturday up in Akron with the whole family (Carl's parents, his sister and brother and their families and my parents). The only person missing was my brother who is going through army training in South Carolina. Evan did so well on the two hour trip up there! He fell asleep during the last hour and we had to wake him when we arrived. We ate lunch and then Evan opened his presents. After Evan's 3 hour nap, we ate cake and ice cream. We didn't try giving him cake, but he ate some ice cream! He slept for about an hour on the trip home. Overall it was a great time!!

Right now Evan is back to sleep again. He got up this morning at 8am and now, at 10am, is sleeping again. I think we wore him out over the weekend! I'm not complaining, though, because I don't have a nurse today and so now I can get a few things done!

Thursday, July 22, 2004 9:08 AM CDT

Sorry this has taken me so long! Here is the rest of the story of our hospital stay.

Evan was supposed to be in the hospital for only a week, but when they tried to take the breathing tube out, he couldn't breathe on his own. They told us this was not unusual since he was probably still weak from surgery. So, they waited a few days and tried again. Once again he turned blue and in an emergency they had to put the tube back in. This was not making a lot of sense to the doctors, but they figured he still needed to gain strength. After letting him rest and gain strength for a couple of weeks, the breathing tube was removed again. Again he turned blue. By this point the doctors suspected something else was wrong. He got some more tests which revealed his entire diaphragm was paralyzed. We realized we were dealing with something serious.

What was supposed to be only a week became a lot longer. Christmas came and went, New Years and Valentine's day. During this time Evan got five more scars (one for his trach, two for his feeding tube, one for his muscle biopsy and one for the nerve biopsy) and had many episodes of turning blue. Looking back at this time is probably more scary than actually going through it. I remember a day when Carl finally decided to go to work. We were in the ICU and Evan still had the breathing tube down his nose. The nurses convinced me to try and hold Evan (we weren't able to very often). The nurse put him in my lap and he immediately went blue and limp. His oxygen levels dropped to 15%. I had to leave the room and just let the nurses and doctors handle it. Finally they got him stablized and I returned. A few hours later they convinced me to try holding him again. What are the chances the same thing would happen? When they handed him to me, his breathing tube must have slipped and blocked his airway. Again he turned blue and went limp. In a split second decision, the respiratory therapist had to completely remove the tube. The doctors brought me in later and showed me that he was breathing completely on his own and doing fine. We were so excited! Maybe he was better. Four hours later he got too tired, turned gray and they had to put the breathing tube back in. This was one of many days with episodes like this. I tell you this so you know that God was truly watching out for Evan. We praise him for all the times God spared his life.

God is so good! I will write later how we were able to go home and how life has been since then!

Sunday, July 18, 2004 2:24 PM CDT

To celebrate Evan's first birthday on the 24th, I am recounting the last year. I have gotten to November when Evan was admitted into the hospital.

It was November 17th and we had an appointment at the pulmonary clinic. A few days before the doctors had determined there was something wrong with his diaphragm and we had better see a specialist. Evan was his typical happy self, but when the doctor saw how he was breathing, she immediately admitted us to Children's. I truly don't know what would have happened if we had not caught it when we did. God was watching over us even when we didn't know we needed it.

In the hospital they did a few more tests and determined his diaphragm had pushed up into his lungs. They said this was common. They would go go in, do surgery to tack it down and Evan would be fine. We were assured we would only be in the hospital for a week at most.

So, on November 19th Evan went in for surgery. I remember so clearly. We took Evan to a prep room and nurses came to take him to surgery. They said it was good that he was too young to have stranger anxiety. When we reached a hallway, Evan and the nurses had to go one way and Carl and I had to go the other. Evan watched as we got further away and started to sob. This was probably one of the hardest things I had to go through. The next time we saw him he didn't look like the same baby.

Tuesday I'll talk about how one week in the hospital turned into three months.

Friday, July 16, 2004 11:21 AM CDT

We are continuing a tribute to Evan's first year . . .

Even at two and three months of age, Evan's antics kept us laughing. There were quite a few times when I would change his diaper he would smile and bat his eyes at me. He is still a big flirt!

At two months he had doubled his birth weight and had gotten pretty chunky. At three months he was getting a little more finicky about eating. He would eat for a few minutes and then be done. If we tried to give him anymore, he would cry. Because he didn't act hungry or upset, the doctors just thought he was getting enough. His eating kept getting less until he practically wouldn't eat at all. That's when we knew something was wrong.

We took him to the pediatricians and he had only gained 8 ounces in 6 weeks. So, we supplemented with formula (which we had to give him with an eye dropper because he wouldn't take a bottle). After still not gaining any weight, the doctors decided to do more tests. I remember while in the x-ray waiting room at Children's Hospital, Evan sat on my lap and smiled at about every person there. They couldn't believe he was only three months old. Even though he probably wasn't feeling well, he still had his awesome personality!

On Sunday I will tell how Evan ended up being admitted into Children's. So stay tuned!!

Wednesday, July 14, 2004 10:04 AM CDT

Evan's birthday is a week from this Saturday, July 24th! I want to look back at Evan's first year with some pictures you may not have ever seen. I will probably update the pictures every other day, so make sure you are watching!

Today I'm going to start with Evan's birth. . . His actual due date was August 1 and so on July 24th I had a routine doctor's appointment. The doctor was concerned there was something wrong with the placenta and so he said, "Are you ready to have a baby today?". I called Carl and told him we needed to go to the hospital and have a baby. At 3pm they started the pitocin. Carl was under the impression we would have a lot of time to think of a boy's name (since all we had was a girl's). So, he settled down to go through the baby name book. Things progressed pretty quickly and I was ready to push at 9:30pm. Forty-five minutes later, we had a baby boy. "What's his name?" the doctor asked. "We don't know!" After everyone left the room to go see the baby in the nursery, Carl and I decided on Evan David. He was 5lbs 14 oz and 19 inches.

A great part of this story is that at 10:15pm when Evan was born, my good friend, Carrie (who was due 3 weeks before me), went into labor. She had a little boy Conor, 16 hours later. We got to be in the hospital together! Isn't God amazing!

We took Evan home 48 hours after he was born. He was a great baby who slept alot and whose cry was so soft all our friends were jealous :). He started smiling when he was only a few weeks old. No one believed that a child could smile that young, but I believe he was genuinely happy.

Sunday, July 11, 2004 2:13 PM CDT

This has been a busy weekend! Friday night we took Evan out for pizza and to the outdoor shopping mall, Easton. He loves riding around in his stroller! We were out late and he didn't get to bed until 9pm. Even though he was tired, he was still such a good boy!

Last night Evan got his first haircut!! (Thanks to my hairdresser, Mimi :) He looks like such a big boy! All his baby curls are gone. I will definitely post pictures soon!

Today we went to church and then out to Bob Evans with some friends. After all that, we took Evan to Sam's Club. A teenage boy named Christian came up to Evan while I was waiting for Carl to check out. He was saying how sad it was that Evan had to be hooked up to a machine. I was able to talk to him about how good God is and how He is the only way we would be able to get through this. So, if you get a chance, say a quick prayer for Christian. Pray that a seed of hope was planted in his heart.

Friday, July 2, 2004 1:10 PM CDT

I just wanted to tell you that God answers prayers!! We have been looking for a minivan for a couple of weeks. Evan is getting pretty heavy to lift up over his vent and put into his carseat. A minivan would be great for him and all of his stuff. Two weeks ago we made an offer on a nice Honda Odessy. Basically the dealership said, "No way." They came within 1500 dollars of our offer and said they couldn't go any lower. Although it would have been easy to just pay the extra 1500, we really felt like this was an opportunity to trust God and let Him work instead of us. So, we declined and said we would keep looking. We then test drove another van that was, in my opinion, ugly. Besides the fact that is was well worn, there was dog hair everywhere.

Later that same night I told Carl that I was hungry for Subway and so we decided to stop by a Honda dealership while we were up that way. The guy at Subway gave us wrong directions and instead of a Honda dealership we were at a GMC/Pontiac/Buick. Right out front on display was a Honda Odessy. Carl turned to me and said, "That's our van." When we got out we saw the price. It was only 900 dollars over what we had offered at the other place! They had just marked it down 4,000 dollars that day! The dealership was about to close, but the salesman said we could take it for a test drive. When he opened it up we were amazed! It had leather seats, a CD player and a DVD player! We couldn't believe what God had led us to! After the test drive, though, we knew we shouldn't just jump and buy it. We needed to know if it was the one God had for us. So we offered what we had offered for the other van (900 dollars lower than the new sale price). The manager came out and explained that since they marked it down so much already he wasn't making any money. There was no way he would go any lower. OK, we said and left. It would have been so easy to give the extra 900, but then we wouldn't know if this was the car for us. At home that night we prayed that God would not let them forget us.

Last night around closing time the salesman called and said, "Are you still interested in that van?" Because he was willing to go lower, we knew this was the one for us. God truly saved this great minivan for us and all we had to do was be willing to lose the other one we liked and walk away from this one. Carl asked the salesperson why they had called us back after they had been so set on the price. He said, "I went home and couldn't stop thinking about you. I told my wife about you and your son and knew I had to call you back."

This is just a reminder for us that God does hear prayers! Our responsibility is to trust Him. I would encourage you to step out in faith when you have those opportunities. It is exciting and strengthens your faith! "...those who hope in the Lord will renew their strength." Isaiah 40:31

Sunday, June 27, 2004 7:31 PM CDT

This has been a busy weekend! Friday and Saturday night we didn't have a nurse and so we took turns "sleeping" in Evan's room. He did really well except for getting restless this morning at 5am. He finally went to sleep again at 6:45am.

Saturday we went and got our family picure taken. Evan did so well! The picture taker said he would probably be the best baby she'd have all day. After the pictures we walked around the mall. I took Evan into his first toy store. I think it was a little overwhelming for him. Once we got home he took a nap and when he woke up we took him to the park. Unfortunately when we got to the park, we realized we didn't have much battery power left for his vent. So our time was cut short.

Today, after going to church all three of us went out to Bob Evan's for lunch. Evan was very tired, but still such a trooper. Then after a nap we headed up to Delaware, OH to see some friends we met at Children's. Their son is on a vent too. It's nice to be able to talk to people who understand what we're going thru.

Friday evening the neurologist, Dr. Friedman, from Cleveland Clinic called to see how Evan was doing. We really enjoy talking to him! He said he has gone through our file so many times and still can't figure out what Evan has. Looking at some information that Carl's sister found on the internet, we think we have an idea of what's going on. The disease is called SMA RD1. This stands for Spinal Muscle Atropy with respiratory distress. The picture fits Evan. We will be faxing this info to Dr. Friedman and then will pursue testing. The only test available is in Germany which means we will have to send blood samples. The prognosis for SMA RD1 is poor and, of course, this is discouraging, but we know God can do anything. So, we ask that you continue to pray for complete healing and also pray that we can make the most of every day!

Monday, June 21, 2004 1:28 PM CDT

I know Father's Day was yesterday, but I want to take some time today to honor Carl. A couple of months ago there was a contest in the Baby Talk magazine asking for essays on the best dad. I entered an essay that I would like to share with you. (My piece didn't win, but it was probably because of my writing skills and not because Carl isn't the best dad :).

Best Dad Ever

Ever since I met my husband, Carl, I knew he would be a good father someday. When our first baby was born he proved to be just that. But it wasn�t until our son went into the hospital that I realized he wasn�t just a good father; he was the best dad ever.
Evan, our three-month-old son, was admitted into the hospital in November for surgery on his diaphragm. The doctors assured us that he would be home within a week. Instead, after four times of trying to get the breathing tube out, we began to understand this might be a longer journey than we had anticipated.
Throughout Evan�s time in the hospital Carl was there stroking his head, praying for him and holding his hand during procedures I couldn�t bear to watch. Many times we would have a friend sit by Evan�s bedside at night so we could get some sleep, but Carl would be there by 4a.m. so our baby would know daddy was there and loved him.
After twenty procedures, eight scars, three months in the hospital and no diagnosis, our son still can�t breathe without a ventilator. Despite these setbacks, Carl is the proudest father I know. Maybe it was the talks they had together at 4a.m. in the ICU, but there is a definite connection between the two. Their faces light up when they see each other.
The journey hasn�t ended and is sometimes exhausting, but God has blessed my son with a dad who reminds him everyday how much he loves him; surely, the best dad ever.

Happy Father's Day, Carl!! Thank you for being such a wonderful father and husband!

Now that I have probably embarrassed Carl, I will move on to what's going on with Evan. Friday night we took him out for pizza with our friends Bruce and Carrie and their little Conor (who is only 16 hours younger than Evan). We definitely drew attention to ourselves, but Evan did so well! He even ate a little bit of a cracker and drank some water.

There ended up being no nurse Friday night, which was ok. Carl slept down in Evan's room and I was able to get a good night of sleep.

Thank you for praying for Evan's legs! Carl has noticed that when pushing his legs up and down he is getting resistance on the way down. Usually Evan will push his legs on the way up and now he will pull slightly on the way down! This is definitely encouraging!! Keep up the prayers!!

Thursday, June 17, 2004 12:51 AM CDT

Nothing much new to report here. On Monday the nurse, Carl and I changed Evan's trach. That was a pretty big accomplishment considering every other time it needed to be changed, we would get it done while at a doctor's appointment. Finally we got up the nerve to do it ourselves. I pulled out the old trach, Bonnie (the nurse) held Evan down and Carl inserted the new one. Everything went as smoothly as can be expected! Now we will just have to look forward to doing it again in another month (or maybe we will have a doctor's appointment around that time:).

We have had great nights! Thanks to all of you who are praying specifically for that! On Friday night we will be having a new nurse because the other two are on vacation. This is always a little tense. Pray that she will only do what she has to and nothing else that might awaken Evan. Also pray that Evan will sleep soundly the whole night!

Even though it can be discouraging and tiring day to day, I am reminded that God can still perform miracles and He still has a plan for us! Thanks again for your support!

Saturday, June 12, 2004 8:19 AM CDT

I just wanted to let everyone know that Evan went for an hour off the vent last night!! Praise the Lord! He played in his exersaucer for most of that time. This time Carl and I weren't hovered over him like we have been in the past. Carl sat next to him ready to suction him if he needed it, but I was in the kitchen making dinner. Knowing that he can go an hour is so encouraging!!

I am going to ask you to start praying specifically for his legs that they would get stronger. Right now the Physical Therapist says his outside leg muscle works well, but the inside and the top muscles don't seem to work at all. This causes his legs to bow out all the time and he isn't able to put much weight on them. As he sat in his excersaucer yesterday, I wanted so badly for his legs to be able to push him up. He was trying hard to have them do that, but they were not cooperating.

Thanks again for your prayers!

Friday, June 11, 2004 8:15 AM CDT

We have had a great week! On Wednesday Evan went for 46 minutes off the ventilator! During that time we walked him around our house and showed him parts he had never seen (including his real bedroom upstairs). He also played for awhile in his exersaucer. It was so much fun to not have him connected to anything!! If he keeps going this long, we are going to call the doctors and get a flouroscopy scheduled to see how his diaphragm is doing.

Wednesday night he was restless and ended up pulling his g-tube out. The nurse was able to get back in without any problem. Other than that, his nights have been really good!

I was reading in Hebrews 11 about faith. It was a reminder to just keep trusting in God and know that he has a special plan for all of us!!

Sunday, June 6, 2004 6:25 PM CDT

On Thursday night we lost power again (for seemingly no reason). God woke Carl up just before and so we were able to help the nurse with the ventilator battery. If we had not woken up, we would not have heard anything because the baby monitor wouldn't work. Because the power was out for two hours, we ended up starting the generator. Thanks to Carl's dad and brother for setting it up before we came home from the hospital!!

Evan had an absolutely awesome vent trial yesterday!! He went for 37 minutes! He watched his entire Baby Einstein video and then we put him in his megasaucer (which he hasn't played in since "the incident"). We are so encouraged by his progress!

Thursday, June 3, 2004 8:03 AM CDT

We must have worn Evan out over the weekend! Yesterday he slept in until 8:30am. Then he went back to sleep from 10:00am until 1:30pm! Carl was in charge last night and said he left Evan playing in his bed while he ran into the kitchen to get some dinner. When he returned moments later, Evan was asleep. What a sleepyhead!

Evan was up at 3am with a mucous plug. Carl ran downstairs (the nurse had just finished changing his diaper and was washing her hands) and by the time he got the suction catheter out and ready, Evan's oxygen had dropped to 50%. After suctioning a few more times, Carl called me because Evan wouldn't settle down. We gave him some Albuterol and that seemed to calm him. He finally fell asleep and when he woke up this morning he was in a great mood! We continually thank God for waking us up when Evan needs us!

Monday, May 31, 2004 4:03 PM CDT

Wow! What a busy weekend! On Saturday we went to my parents which is about an hour away. Evan did great! He loved seeing new people. He even took a two hour nap on my parents bed while we ate lunch. Then we all went on a walk around the neighborhood. Evan is so funny about sun and wind. He covers his face and when the wind blows he thinks he can't breathe as well. It may be because he has not been outside very often and it's still so new.

Yesterday Carl's sister and her family came to visit. We brought Evan out into the family room to be with the rest of us. He also came out on the deck while we ate! I finally feel like we are doing "normal" things.

The weekend must have worn him out. He went to bed before 8:00pm and didn't wake up at all until 8:30am! Then after being up for only an hour and a half, he took a two hour nap! He's not used to all this activity.

He is still doing well with his vent trials. Even with being so tired today he went 13 minutes!

We are reminded on a daily basis how blessed we are to have Evan. I wish all of you could meet him in person! He is a great example of being joyful in the midst of hardship. Of all people, you would expect him to be grumpy. He goes through discomfort multiple times a day and yet he continues to smile. "Consider it pure joy, my brothers, whenever you face trials of many kinds . . ." James 1:2

Friday, May 28, 2004 8:00 PM CDT

The craziest thing happened this morning. It was 6am, Carl was still home, the nurse had just left and the electricity went out for no apparent reason. We had a great opportunity to see what we needed to do. After about 15 minutes of his vent running on its internal battery we plugged it into the car battery. After 1 and a half that battery started chirpping. Carl went out and started the generator. As soon as he did, the electricity came back on. It was good to know that the battery only lasts about an hour and a half!

Evan has a busy weekend ahead! We plan to go to my parents house tomorrow which is an hour away. This will be the longest road trip he has been on since being on the ventilator. He usually does really well in the car and so I don't expect this to be any different.

Encouraging verse of the day: "Are not all angels ministering spirits sent to serve those who will inherit salvation?" Hebrews 1:14 It is good to know there are angels ministering to me during my discouraging times!

Tuesday, May 25, 2004 7:10 AM CDT

Evan has been doing so well with his vent trials! On Saturday he was off for 8 minutes. Sunday and Monday we had him off for 11 minutes! His pulmonary doctor said that once we get him to 30-40 minutes, they will do another flouroscopy (sp?). This will show whether his diaphragm is working again. 30-40 minutes sounds like a really long time, but I have to remember just a few weeks ago we were doing 3minutes.

The passy-muir valve just won't work. When he has it on, the ventilator doesn't read his breathing and so it doesn't give him the support he needs. Of course this makes him upset. And actually, he is making A LOT of sounds without the help. He can almost say "hi" and now he can also whine. The whining isn't because he is upset, he is just trying out his vocal cords.

Thanks again for all your prayers! He continues to be such a joy and blessing!

Sunday, May 23, 2004 2:48 PM CDT

Yesterday was a very busy day for Evan!! Grandma and Grandpa Weise are in town for a visit. We decided to take Evan out for a treat. So, we took him to the zoo! Yes, I know we are crazy parents. Taking our ventilated child to the zoo on the hottest day of the year so far. It was also very crowded! When we first walked through the gate a little boy ran right up to Evan and almost grabbed his vent tubing. I thought, "This should be fun." If you ask Carl I was a bit stressed. The sun was so bright and hot and I tried to keep Evan out of it as much as possible. And with all the people so close to him. . . Aaah! But, he did awesome! We didn't have to suction him once. He smiled the whole time even when he was getting so hot and tired. He made a lot of people smile! Overall it was a good trip with no issues!

Evan was so worn out after we got back. We put him to bed at 6pm. He got up at 5:30am to be suctioned and then went back to bed until 10am. I would like to take him to get ice cream tonight. We'll see how tired he is.

Saturday, May 22, 2004 10:12 AM CDT

Evan is doing really well! He had a great day yesterday. He did well with his exercises and was in a good mood. Last night he slept all the way until 7am.

This morning we decided to finally do a vent trial. Things have been so busy we haven't done one for almost a week. He did great! He went 8 minutes and didn't even looked stressed.

Verse for today: "Be strong and courageous. Do not be terrified; do not be discouraged, for the Lord your God will be with you wherever you go." Joshua 1:9

Thursday, May 20, 2004 9:02 AM CDT

Sorry it has been a few days since I've written! Since the nurse is back from vacation, I feel like I can get out and do some things.

Evan's doctor's appointment on Tuesday went ok. The neurologist doesn't have a lot to contribute. We still don't know what is wrong with Evan (and may never know) and since she only sees him every few months, she doesn't know really know if he is getting weaker or stronger. I think I am going to have to rely on his physical therapist for that observation.

The Passy-Muir valve (which would help him to talk) is a big pain! It is a special attachment to the vent and goes over his trach. When they were trying it out at the hospital, they had to take him off the vent to fit this attachment on. It took a little longer than Evan wanted for them to do it and so he just got mad. Yesterday I tried to put it on, but couldn't get it to fit. You would think they could design it so it would be easy to get on and off. Needless to say, I think Evan can make enough noise on his own without the help. In fact, I have been teaching him to say "Mama". He has almost got it!

Monday, May 17, 2004 12:56 AM CDT

The last few days have been great! He slept all night last night and didn't wake up until 6:45am! He has been in such a good mood too!

Tomorrow we have a neurology appointment. I don't think there will be much new, but we'll see. An exciting thing about tomorrow is that we are going to see if he tolerates a special valve on his trach that will allow him to talk! Pray that he will tolerate it because I think he will love it!!

Saturday, May 15, 2004 9:20 AM CDT

My talk at MOPS yesterday went really well! I brought Evan in at the end so the women could see him. I feel like God was able to use my testimony and that gives me strength to keep going!

Evan seems to finally be over his infection! He has had a few really good days in a row. Last night he went to bed at 8pm and didn't wake up until 7am! Praise the Lord! Carl and I needed the sleep so badly!

Evan is learning a few new things. He likes to imitate facial expressions and the new one he does is squinting and rolling his eyes. I will squint my eyes and he will do it in return. Sometimes he will look at me and roll his eyes. He keeps us laughing all day and that just encourages him to do more. We are so blessed to have him in our lives! He is such a joy!

Thursday, May 13, 2004 2:32 PM CDT

Evan has been so much better today!! He slept until 5:30am and I have not suctioned him nearly as much all day. He had two physical therapists come see him at different times. All along we have had physical therapy with MR/DD (which happens to be free). But, they are only able to come out about every month or so. Evan needs therapy more often than that and so I called to get private therapy set up. Well, it happened that the private therapist could only come today, the same day as our other one. So, needless to say, Evan got a workout. The private therapist knows what she is talking about as far as which muscles he is using and which ones aren't working. The first thing she said is, "Wow, Evan definitely has low muscle tone." Of course for any mother to hear this, it is discouraging. I knew he didn't have tone, but to hear someone else say it was hard. The second therapist came a couple hours later and kept saying, "He's doing so well." This was encouraging, but made me wonder if she was just saying it to be nice. I have to keep reminding myself, God is good even if he is getting weaker.

Tomorrow I have a great opportunity to speak to a MOPS group that I used to belong to before all this happened. I am very excited to share what God has taught me and maybe be an encouragement to other mothers. If you think about it, pray that God would use my testimony in a powerful way tomorrow! Thanks!

Wednesday, May 12, 2004 2:49 PM CDT

I think Evan is feeling a little better although we are having trouble keeping his heart rate down. His resting heart rate has been in the 170s. It must mean he is fighting something off. Motrin seems to help calm him down.

Last night he was up at 4:30am (which is better than 2am and 3am the last consecutive nights). The only problem is that we couldn't get him to go back to sleep. It wasn't until 6:30am that his heart rate went down and he fell asleep.

Yesterday we had our new nurse and I think we will like her. However since she is new, I felt like I had to be in the room all the time. It will take her a few visits to understand Evan's quirks.

Today my mom is here! Again she is cooking and doing laundry! Thank you mom!!

I read a little bit of Job this morning and was comforted by his honesty. He truly thought that God was against him and would not listen to his cries for help. "How I long for the months gone by, for the days when God watched over me . . ." Job 29:2 There are definitely times I look back and wish for the times when everything seemed to be going so well. Last year at this time I was pregnant with Evan and had all the dreams of an expectant mother. Two years ago, Carrie, Bruce, Carl and I had just returned from Hawaii. And three years ago today I was at the altar marrying my best friend. The verse in Ecclesiastes 7:10 says, "Do not say, Why were the old days better than these? For it is not wise to ask such questions." As God teaches me I want to be able to say what Job said after God spoke to him, "I know that you can do all things; no plan of yours can be thwarted. . . Surely I spoke of things I did not understand, things too wonderful for me to know."

Monday, May 10, 2004 4:35 PM CDT

Evan is feeling a little better this afternoon. Overnight he was awake from 2am-4am. Carl and I took turns being with him. Yes, we do have a nurse, but I don't think I could be upstairs while his alarms are going off downstairs. Finally I gave him Albuterol and he settled down and slept until 8am. This morning was a bit rough because he was so junky, but by the afternoon he was his normal smiling self. My mom is here today which has been a huge help. She has done laundry and ironing and cooking. I feel a little less insane right now! I was even able to jump in the shower!

Right now he is in the middle of a three hour nap! We must have really worn him out.

Here is a verse I keep thinking about for this crazy week; "But we have this treasure in jars of clay to show that this all-surpassing power is from God and not from us. We are hard pressed on every side, but not crushed; perplexed, but not in despair; persecuted, but not abandoned; struck down, but not destroyed." 2 Corinthians 4:7-9

Sunday, May 9, 2004 8:20 PM CDT

To all the mothers: Happy Mother's Day! This is definitely not the way I envisioned spending my first Mother's Day. We were supposed to go out for brunch with my parents which is our yearly tradition. I was so excited to get out and do something normal. But, this was not what God had in store. . . Evan slept all the way until 3:30am and then he woke up with his airway plugged up with secretions. His oxygen dropped to 50%. As soon as Carl suctioned him his oxygen came back up. But he was still junky. We stayed up for an hour suctioning and then Evan never really went back to sleep. Later in the morning I suctioned out some blood. After calling the doctor, he said that we should come to the emergency room to get checked out. So we went to the ER for the third day out of four. The x-ray showed nothing, but they put him on anitbiotics anyway. Besides being extra junky (meaning a lot of secretions) and a little more quiet than usual, he seems to be doing fine. He still smiles all the time!

I am so encouraged that God hears us and is answering our prayers. On Friday night we knew that it was going to be a rough night. So Carl and I prayed that God would wake people up in the middle of the night to pray for Evan. The next day two people said they woke up and couldn't go back to sleep until they prayed for Evan. So if you couldn't sleep on Friday night, that was our fault :).

Saturday, May 8, 2004 6:37 PM CDT

Last night was trying. Evan was up every 1-2 hours to be suctioned. We were still suctioning out brownish colored secretions (usually they are clear or white). This makes me think that maybe when he got the silver nitrate on his trach site it seeped down into his trachea and burned it. Maybe that is why he got so upset and why we suctioned out blood. I don't know if this is even possible, but it makes sense.

He has been a little better today, but we have still had to suction about every 10-15 minutes. This means that we haven't really been able to leave Evan's side. Carl and I took turns with him while the other one slept or just got away.

We are supposed to go out for brunch with my parents for Mother's Day. I was so looking forward to going out and doing something normal (even though nothing is normal when you take a child out with a ventilator), but I am not sure Evan will be up to leaving the house.

When I think about the coming week, I begin to dread it. Of course the time that Evan is not himself, the nurse and the doctor are on vacation. I have to remind myself that God knew all of this beforehand and nothing is surprising Him.

"The angel of the Lord encamps around those who fear him, and he delivers them." Psalm 34:7

Friday, May 7, 2004 7:25 PM CDT

Well, another day spent in the ER. We went this afternoon for a routine visit so the surgeon could look at Evan's trach site. There was some granulation tissue that had to be removed. So they burnt it off with silver nitrate. Evan got so upset! I have never seen him that frantic. He swallowed so much air that his stomach bloated out. His heart rate jumped up to 210 and he would not calm down. We hooked him up to oxygen so that he wouldn't have to work so hard. But he was in a lot of pain because of all the gas. Finally the doctors decided to escort us down to the ER so that the docs down there could keep an eye on him. We ended up in the same ER room we were in yesterday and with the same doctor. Evan got another chest x-ray to make sure he hadn't developed an infection. Everything looked good in his lungs, but they still wanted to admit us overnight. After a few hours, though, Evan had calmed down and after vomiting, fell asleep. Carl and I decided just to take him home so he could rest.

He's sleeping right now, but wakes up quite often to be suctioned. We are suctioning up some blood (probably because of the trauma his trach site went through) and a little bit of yellow which could indicate an infection. Please pray for him! He does not need pneumonia!! Pray also for us that we can get some rest too. This may be a long night.

Thursday, May 6, 2004 2:28 PM CDT

Well, we have had an eventful day! Actually we don't need any more events like this for a long time! The nurse and I were playing with Evan in his excersaucer and his ventilator heater fell over. This is a container full of water connected to his tubing that heats and humidifies his air. The water then was sucked up into his tubing that goes to his lungs. As a safety feature the ventilator shuts off when it senses water in the tubes. We didn't know this. All we knew was that the vent was alarming, not breathing for Evan and Evan was turning blue. I scooped him out of the excersaucer and put him in bed. I was still trying to figure out if the ventilator had come disconnected somewhere. Because he was in distress, we quickly took him off the vent to use the resuscitation bag. As soon as we did, water came squirting out of his vent tubing. The nurse started suctioning his lungs out and I kept bagging him. His oxygen had dropped down to 50%, but slowly came back up. After we got him stable I called 911 because he still looked like he was working too hard to breathe and the nurse was still suctioning some water out. We spent some time in the ER. They got an x-ray and said everything looked fine. By this time he was back to himself, smiling and flirting with all the nurses. Now we are back home and he is sound asleep. This ordeal wore him out. The only thing is now we are going to have to watch him and make sure he doesn't have pneumonia from aspiriating the water.

Looking back I can see how God took care of us. First, there were two of us here. One to bag and one to suction. Second, I think it was good for the paramedics to meet Evan in a relatively stable situation. They were able to learn more about his condition and what needs to be done for him if there is an emergency.

Thanks again for all your prayers! I get e-mails about everyday from people just saying they are praying for us. I bet there were people who just got the urge to pray for Evan this afternoon not even knowing why. God is so good!

Wednesday, May 5, 2004 7:21 PM CDT

We had another great day! Evan did great with his vent trials. The first one we did for over 3 mintues and this last one we did for 4 and a half minutes!

I am enjoying my time with a nurse. Next week our nurse who works four days a week is going on vacation. So we won't have a day nurse Saturday, Sunday, Monday, Wednesday, Thursday, Friday, Saturday and Sunday. This is definitely a prayer request! My mom is coming over a few days to help out with some housework. That will be a great help!

Evan had speech therapy and we talked about teaching him some signs. He wants to talk in the worst way! He will imitate the way our mouths are moving and so it looks like he is talking. I'm sure if he didn't have a trach he would have a lot to say. Sometime this month we are going to the clinic to try a special valve on his trach that will allow him to make noise. Many people with trachs who try it hate it because it feels so different. It lets air flow in, but doesn't let it flow out through the trach. Instead it pushes the air out his mouth. I think after the initial shock and once he realizes he can make noises, he might like it.

The verse for the upcoming "no nurse" week:
"He said to me, 'My strength is sufficient for you, for my power is made perfect in weakness.' Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me. That is why, for Christ's sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong." 2 Corinthians 12:9 & 10

Tuesday, May 4, 2004 4:38 PM CDT

Today has been another good day! We have a new nurse that came for orientation and will be starting next Tuesday. I think we will like her a lot!

Earlier we took Evan off the vent and he did great! We left him off for a little over 3 minutes and could have done it longer, but really don't want to wear him out.

He also did great with eating! For about three months we have been trying to get him to eat by mouth. He just doesn't seem to have any interest (as do most kids with trachs). Finally the last few days I feel like we've made some progress. He has discovered that he can lick the food off his lips. He actually opened his mouth for the food!! This is another prayer request. Not only would it be great for him to breathe on his own, but to eat on his own too.

Monday, May 3, 2004 11:06 AM CDT

Evan had another great night! I hope this is a trend that will continue! We weren't able to do any vent trials yesterday, but hopefully will today.

This week we start our new schedule with the nurses. For the last 2 and 1/2 months we have had the same day nurses the same days a week. Now we are losing one :( and getting a new one. I guess it's just one more thing to adjust to. God has been good and I'm sure this is in His plan too!

I heard a sermon today by Charles Stanley on Job. He was saying that everything we have, including our kids, are on loan to us. It is our responsibility to take care of them, but we don't own them. Evan belongs to God and whatever He chooses is His choice. It is reassuring to know we are not in control!

Saturday, May 1, 2004 11:47 AM CDT

We have had a great day!! First of all Evan didn't make a peep all night. In fact the nurse said he was sleeping so soundly that he was breathing only 10 breaths per minute for about 15 minutes. Usually he breathes 20-30 while he sleeps. Basically he was letting the vent do all the work for him.

I also slept awesome! I closed my eyes to go to sleep and didn't open them again until it was time to get up! I haven't done that for months! Thank you to all who have been praying for rest!

We took Evan off the vent today. We were only supposed to take him off for 2 minutes, but he was doing so well. We extended it to a little over 3 minutes. He wasn't in any distress when we put it back on, but we didn't want to tire him out. While breathing on his own his oxygen stayed the same and his heart rate actually went down!

We keep praying that the glory of God would be revealed through Evan's life!

Friday, April 30, 2004 12:30 AM CDT

Well, we got back from the doctor's office. While we were there the doctor took Evan off the ventilator for 5 minutes. He did great! His oxygen stayed at 97 or 98, but at the end of the trial Evan's heart rate started climbing. (I had it in my mind that we would take him off until he turned blue to see how long he would last. Thank goodness that wasn't the case!) The doctor was really impressed with how he did. She said that even if his diaphragm worked perfectly we still would have to gradually take him off the ventilator. After all this time that he has been on it, his muscles haven't been working very hard and are weak. So, the plan is to take him off for two minutes twice a day for a week and then increase the time every week. This will be a slow process, but at least there may be light at the end of the tunnel.

Thanks again for your prayers!

Thursday, April 29, 2004 9:36 AM CDT

Dear Friends,

"Our struggle is not against flesh and blood, but against the rulers, against the authorities, against the powers of this dark world and against the spiritual forces of evil in the heavenly realms." Ephesians 6:12

This verse is becoming more real to Carl and I over the last few days. Just a few moments ago I was talking to my mom and telling her how I want to get on the internet. I was planning on calling on all the prayer warriors to pray for Evan's appointment tomorrow. As I was saying this I heard Evan's alarms going off in the other room. I went in to check on him and his oxygen had dropped to 71%(not good). He was absolutely frantic as the nurse tried to suction him. Quickly I turned on his oxygen attached to his vent and slowly his numbers climbed up. I picked him up and calmed him down, but he was still not himself. Once again we tried to suction and his oxygen dropped. I put him on my lap and rocked him until he almost fell asleep. As I rocked him I got a coughing attack and my head felt horrible. Finally I had to put him in his crib so I could get over my "attack". Right now Evan is sound asleep in his crib and we still don't know why he was so panicked. I feel like I'm in the middle of a huge battle!

Evan's night was great! However, Carl and I both woke up with what looks like pink eye. Oh Lord, what next?! (Maybe this is not a wise question to ask :)

Anyway, about tomorrow. Carl and I feel so burdened to call on all of you to pray for Evan's healing! Some things that have been happening might actually not be so bad if God chooses to heal Evan. For instance, it will be ok that we weren't approved for Medicaid because we won't be needing nurses. Something else that Carl pointed out is a shipment we received yesterday. It is full of things that Evan would need for just a trach and no vent. Of course at first I was frustrated that they had sent us all the wrong things, but Carl said, "Well, you never know, maybe we will need these."

God is so good no matter what! But He still calls us to pray humbly for the desires of our heart! Thank you so much for all your support! We love you!

Wednesday, April 28, 2004 9:11 AM CDT

Last evening was rough for us. It wasn't Evan. He was a perfect angel. But Carl and I felt so sick. Carl came home from work early with a headache and went right to bed. I did the bedtime routine and thankfully Evan went down easily. Then I headed to bed. We both felt extremely tired and nauseous. We also had such a heavy burden to pray for Evan's healing. I don't know how long I can keep up this pace (but I know God will give me strength for as long as I need it). God was good to us last night. We prayed that Evan would have a good night and we would get some rest. Sure enough Evan slept all the way until 7am. He had no issues and the nurse said he only opened up his eyes at 3am, smiled and went back to sleep. Praise the Lord! Carl and I feel a lot better this morning!

I think of the verse, "Those who sow in tears will reap with songs of joy." Psalm 126:5 I look forward to the songs of joy!

Continue to pray for Friday! (see previous journal entry)

Tuesday, April 27, 2004 8:22 AM CDT

I wanted to tell you about this Friday (April 30th). This will be a big day for Evan and it would be great if you would remember us in your prayers. He is scheduled to go into the pulmonary clinic at 9:30am. They are going to take him off the ventilator to see what happens. I feel like I would rather not be in the room at that time, but thankfully there will be a lot of doctors and nurses around to help if anything goes wrong. In my own human knowledge, I really don't think he is going to do very well off the vent. God, however, may have other plans (I hope so)!

I keep thinking of the verse, "Trust in the Lord with all your heart and lean not on your own understanding. In all your ways acknowledge Him and He will direct your paths." Proverbs 3:5&6 The way I understand it, his diaphragm is probably still not working, but that's why we need to keep trusting in the Lord.

Please pray first of all that Evan might do so well that he might not need the vent 24/7 (or at all). Also pray that if he doesn't do well, that Carl and I would accept it and continue to trust in God's plan.

Thanks again!

Saturday, April 24, 2004 4:48 PM CDT

Well, this weekend we don't have a nurse (at least during the day) and so Evan's care is up to us. Today I woke up with a sore throat and was absolutely exhausted. Everytime Evan went down for a nap, so did I. Pray that Evan doesn't catch what I have!!

In case you are curious as to the schedule we go through on a daily basis, here it is (sorry, �t's long):

3am - Evan has been waking up needing to be suctioned. (This means the nurse takes a suction catheter and sticks it through his vent and trach to suction out secretions that he coughs up.) Usually we turn on the video monitor and make sure he doesn't have any issues. This lasts about 1 hour. Then he falls back to sleep.

6am - It's time for the nurse to leave and so we come down to relieve her. This morning Evan woke up as she was leaving. He then needs to be suctioned again. Maybe for another 45 minutes or so.

7am - He goes back to sleep!! Sometimes I do too!

8am - On weekdays this is when the day nurse arrives. But today he woke up and I played with him a little.

9am, 12pm, 3pm & 6pm - We feed him through his G-tube (this is a tube that goes directly into his stomach)

During the day we get him down on the floor and do some exercises and work on his crawling position (which he hates). We also put him in his swing, high chair and excersaucer. I try to feed him baby food at least once a day, but he usually gets more on his mouth than in it.

4pm - On weekdays the nurse leaves and I am left alone until Carl gets back from work.

7pm - We start the bedtime rountine:
- Clean around his trach
- Put his boots on (they keep his feet in the right position all night)
- Fill up his humidifier that's connected to his ventilator
- Start his continuous all night feeds
- Give him one last suction
- Sing and say goodnight

10pm - The night nurse arrives! We can finally go to bed!

Right now he is sitting in his high chair watching a Baby Einstein video. Now's the time for me to get a few things done.

Thanks again for all your prayers!

Thursday, April 22, 2004 6:19 PM CDT

I wanted to let everyone know who read the last update that the insurance company called and they will cover nursing for another 30 days! Praise the Lord! We still want to contest the denial of Medicaid, but this will help in the mean time.

Thanks for Praying!

Thursday, April 22, 2004 12:42 AM CDT

Evan has had a great week! We took him outside on Sunday and he loved it! He would look up at the trees and just smile.

His legs seem to be getting stronger because he is able to put a little more weight on them. He can also spend more time on all fours before he gets mad.

Our new faith challenge came up last night. I opened a letter from Franklin County stating our Medicaid Waver application had been denied. Medcaid was supposed to start paying our nurses because our insurance company stopped covering them April 20. We were very shocked that Evan doesn't have enough medical need for nursing. (What??) In trying to imagine what life would be like without nursing, I can get very tired. I would never be able to leave the house or maybe not even get into the shower. We could worry about this, but God has given us a peace. This is our opportunity to step back and see what God is going to do. Isn't a journey of faith exciting?!

Cast all your cares on him for he cares for you. I Pet 5:7

Wednesday, April 14, 2004 12:30 pm

Our journey began November 17, 2003. Evan (who was three months old at the time) was admitted into the hospital because his breathing did not seem right. After a few tests they decided that his right diaphragm was being pushed up by his liver. On November 19, 2003 he went in to have this fixed. The doctors were all predicting we would be there at the most 1 week. Evan was placed on a ventilator as a precaution after his surgery. After four times of trying to get him to breathe on his own we realized there was a deeper issue.

We were in the hospital until February 17, 2004. Exactly 3 months from when we arrived, we went home. Evan's condition is still undiagnosed. But here is what we know. His diaphragm is completely paralyzed. All his muscles are weak but especially his legs and hands.

Despite these weaknesses, Evan is the happiest baby we know. He loves to entertain and be the center of attention. Everyday he learns something new. This past weekend he learned how to shake his head "no". (He had been nodding his head "yes") He also learned to wave. God has blessed us so much!

Thank you so much for all your prayers! We continue to pray for healing, but we know that God will do whatever He sees fit. Thank goodness God is in control and we don't have to worry about it!

I hope to keep this journal updated on Evan's progress (including new pictures). So stay tuned! Feel free to e-mail!

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