History

Monday, June 1, 2009 4:39 PM CDT

We had a beautiful weekend in Chicago and were able to get outside with the kids.

Jack lost his first tooth yesterday! Actually, we noticed that he now has two rows of teeth on the bottom, and that is because his permanent teeth are coming in behind his baby teeth, and his baby teeth are very crowded to begin with. I don't think his other baby teeth can come out, so we'll be taking a trip to the dentist soon! In any event, we took a picture of him and he was fascinated with looking at himself on the digital camera. We put his tooth under his pillow, too, and the Tooth Fairy made a visit!

Our elevator project is about 70% done. The yard has been completely torn up in the process, though, so Bob is now focusing on getting in new sod, replacing the fence, etc. The nurses have said that the contractors should have to carry the boys up and down the stairs as incentive to get the elevator done faster!

I have started training for the Chicago Rock 'n Roll Half Marathon in August and the Chicago Marathon in October. It will be my first marathon, so I have been training so I don't die!! I will be running on behalf of The Evanosky Foundation, so if you would like to support me, click here. Jack has been my running buddy for training. He likes to "talk" or "sing" while he's in the jogging stroller. I came home from work a couple of weeks ago and thought it might be nice to go for a run, so I asked Jack if he wanted to go running with Mommy. Immediately, he threw his toy and put his hands up for me to pick him up! It definitely increases the intensity of the training when you're pushing him!

The Evanosky Foundation is a co-sponsor of a 5K run/walk in Wheaton on June 13, so if you're interested in joining us, please go to www.runforthestars.com for more info.

Jack is also doing really well with his feeding, and we are no longer feeding him via his G-tube at night. He does receive a bolus (all at once) feed of Pediasure in the morning, and then we feed him baby food for the remainder of the day. He is doing well and we hope we can transition him to "chewable" foods.

John and Christopher are doing very well. They finish up school this week and then have a bit of a break before summer school starts. They have been hanging outside with Bob through all of the construction and yard projects, and they like it.

We Win in the End,

Sonya

Sunday, April 26, 2009 12:01 AM CDT

It has been a while since we've updated! John and Christopher ended up getting out of the hospital the evening of Easter Sunday. They are doing much better now and are over their sickness. The weather has been much warmer and we've been able to take them outside which has been nice.

Right now, we're in the RV traveling down to Duke for the Rainbow Walk of Heroes next weekend. My sister Dana and her son Evan are travelling with us, too. Dana has done a lot of work on the Houses of Hope and hasn't had a chance to see them, so she will also be helping us put the final touches on House of Hope II.

We spent the night last night at the Louisville KOA and this morning we went over to visit the Webbs who have two children, Thomas and Lucas, who were recently diagnosed with MLD. They are planning to transplant Lucas at Duke, so we wanted to meet them and try to offer any kind of support that we can. Please pray for them as they have a lot of logistical challenges in figuring out who will take care of Thomas while Lucas is in the hospital, etc. We had a good visit with them and are glad we could meet.

We Win in the End,

Sonya

Thursday, April 9, 2009 10:20 PM CDT

John and Christopher have been pretty sick this week--both Jack and I got a cold which John and Christopher also got. It seems to have settled in their chests so they have been receiving lots of medication, respiratory therapy, etc. I think this will be a "stay home and get better" weekend.

I took Jack to his first movie in a movie theater this past week. We went to see "Monsters vs. Aliens". He sat in his wheelchair in the disabled seating area and he was very intrigued with the large screen. The movie wasn't exactly "Jack approved", though, so after about an hour he got restless and started complaining/crying loud enough to make a disturbance, so we left. As soon as we walked out of the building, he started crying, but I told him that he has to be quiet in a movie theater and can't complain. So, altogether not a bad experience. We'll need to work up to a full movie!

Jack has been working hard at physical therapy. They have been putting him in a little car that he can move by pushing the wheels with his hands, and he's doing good at it. The goal is to strengthen his arms so they're strong enough to power a manual wheelchair. He's also been doing really well with eating, and oatmeal and sweet potato chicken dinner are the current favorites! I went into his room the other night when he was supposed to be sleeping, and he was sitting up in bed just hanging out. When I came in he started saying "Mum, mum, mum". I said, "Yes, I'm Mom-Mom" and he kept repeating it. It was pretty neat. I have been teasing him the past couple of months that he needs to quit saying "Da-da-da" and start saying "Mum, mum, mum" so apparently my subtle suggestions are sinking in!

The elevator project is coming along. We have different flooring in the basement now and no longer have any carpet, which is a good thing. The next step is to start framing out the elevator shaft, so I think that will start next week.

Wishing you all a blessed Easter! It is because of the resurrection that we have hope that our boys will one day be free in new, perfect, bodies in a place with no pain and no tears.

We Win in the End,

Sonya

Monday, March 23, 2009 9:59 PM CDT

Spring is finally coming to Chicago! Jack and I went on a run this weekend and it felt really good. I think Jack gets the better end of the deal as he gets to ride in his jogging stroller the whole time!

Yesterday I took all of the boys to church. Afterwards, we had the elders and pastors pray for the boys. John and Christopher love praying--or "talking to Jesus" as we call it--and I had explained to them that there were going to be a bunch of people getting together to talk to Jesus about them getting better. They both belly laughed when they were praying. It always amazes me how joyful and happy they are when we pray. I suppose that is how we should approach prayer--as something joyous--and they continually remind us of that.

This weekend we also were able to spend some time outside and Jack was able to go around in his little bumper car. We searched a long time to find a car that he didn't have to control with his feet, and we found one that is joystick controlled. Last summer when we bought it, Jack would cry whenever we put him in it and he always wanted me to do the controls which of course killed my back. This weekend, though, he took right off in the car and had a blast. He was doing circles in the middle of the street and laughing hysterically. This is really good because his doctor wants him to get a power wheelchair and most of them are controlled through a joystick. The major downside is he can't steer very well yet!

Bob is down at Duke with his dad, our brother-in-law, and some friends. They are finishing House of Hope II and are planning to be done by Friday. If you would like to help but don't want to swing a hammer or any other power tool, you can purchase an item from one of the registries by clicking here.

We recently were contacted by another family who just found out that both of their children have MLD. Please pray for the Webb family that they will be able to treat their children and they would receive strength. You can follow their story at www.caringbridge.org/visit/thomasjoseph. Also, our dear friend Parker Fritsch is struggling with skin cancer, so he needs prayer, too. He was at Duke with Jack and they both were outpatient in Durham at the same time, so we became good friends with the Fritsch family. You can follow their story at www.caringbridge.org/ca/parkerfritsch.

With all of these prayer requests we do continue to have reasons to give thanks, too--next week will be Jack's 4 year transplant anniversary! We are so thankful for Jack's progress and we know each day is a gift. Our hope is that other families like the Webbs and the Fritsches will be to celebrate many more days with their children--keep the faith!

We Win in the End,

Sonya

Saturday, March 14, 2009 12:24 AM CDT

We are beginning to see signs of Spring here in Chicago and we hope that we are done with at least the worst of winter!

All of the boys are doing well and are in good health. John and Christopher continue to attend school at home, with their teacher, Mrs. Romano, coming in 4 days per week. They have really warmed up to her and are doing well. Bob set up Jack's computer so the boys can start using it, too. Of course, their favorite program is the one that makes obnoxious sounds like bodily functions, if you know what I mean. They also got a book at the library that talks about dinosaur "farts" and they think that is the funniest thing ever. They are boys!! Bob finished painting their room and it is very bright and colorful. We're doing it in an airplane theme, and we have gotten some of the old tin signs advertising airplane rides and it looks cute.

Jack is doing well. He had a feeding evaluation the other day and we got some suggestions for feeding and working with different textures. He is getting most of his food by mouth and we want to make this year the year that we ditch his g-tube!

In construction news, an elevator is going in for the kids since they are getting so heavy it's difficult to get nursing coverage. We have a 12-foot deep hole in our backyard, and they had to cut through our basement wall, so as you can imagine, we have a bit of a mess. We are taking out the carpet in the basement as it has not held up well from medicines, "accidents", etc. We have decided that we are not a carpet family! The elevator will go to all the floors in our house, but we want to finish one floor before we move to the next so we don't have complete chaos everywhere. Bob also purchased a large aquarium and is building a stand for it so we can have freshwater fish. We think the boys will really like it and he's been taking them to the aquarium store which they enjoy.

Next weekend Bob is going to Durham with 4 other guys to work on the House of Hope II. They will be painting, installing wood floors and setting up the furniture. If you would like to help, please let Bob know. You can also help purchase items for the House of Hope--see http://www.evanoskyfoundation.org/12807/12483.html for more info.

The boys will all be going to church with us tomorrow. We haven't been able to do that in a long time, so that is a blessing.

We Win in the End,

Sonya

Wednesday, February 25, 2009 9:03 PM CST

Sorry that I have not been very good about updating this month! John was in the hospital at the beginning of the month for pneumonia, but he is out now and everything is fine. Other than that, the boys are in good health and doing well.

Jack is doing better with his glasses now. We have a little "croakie" strap that we put around them so it makes it harder for him to take them off. The glasses and strap have a tendency to get pretty gooey with food, so we're constantly cleaning them! Jack is doing really good eating food by mouth and is eating about 75% of his calories now. We are hoping that we will soon get to the point where we can take out his g-tube. Bob went to Jack's parent-teacher conference at school and the teacher said Jack is being much more cooperative and is doing well with matching and colors. She put together an activity based on "Wheels on the Bus" which is his favorite song, and he does a great job at it.

Bob has been painting John and Christopher's room. We haven't decorated it since they were born, so we figured since they are now 7 and "big boys" we should re-do the decor. The theme is red, white and blue and Bob is mostly done painting. The boys like the colors. John has been "talking" or vocalizing quite a bit lately, and we always encourage him to do that.

This past weekend a photographer came over to the house to photograph the boys for the Genzyme annual report. Genzyme is a company that is very involved with newborn screening and has helped to develop the newborn screening tests for several fatal diseases that are similar to MLD. The photographer was great and we're hoping we'll be able to get copies of the photos to post.

Big news today! Bob went down to Jefferson City, Missouri today to testify before the Health Policy Committee for House Bill 716, which will mandate newborn screening for Krabbe, Pompe, Fabry, Neimann-Pick and Gaucher diseases in the state of Missouri. These are the same diseases that we advocated for in Illinois SB1566, which was passed in November 2007. Bob has been working very closely with a family whose grandson, Brady, has Krabbe disease, and the bill has been very favorably received so far. Please pray for Brady and his family, that they can all be strong and be comforted. If you live in Missouri, I would encourage you to contact your legislator to support this very important bill!

Along with the good news, we also had news that made our hearts feel heavy. We learned that Cristopher "Junior" Luna passed away this past week. We had been working with a missionary in the Dominican Republic, Ivan Rosalia, who had been helping Junior and his mother cope with Junior's leukodystrophy. Through The Evanosky Foundation, we had been sending needed medical supplies to Junior's family for the past 18 months. We were sad to hear that Junior passed on, but we know he is now free and able to run, jump, walk and talk and do all of the things in heaven that he could no longer do here on earth. Please continue to pray for Ivan and Junior's mother, Jenny.

We are also opening up our second House of Hope in Durham, NC in late March. Bob is assembling a group of volunteers to drive down with him from Chicago and they will be painting, installing new flooring and putting in the furniture from March 22-26. If you're in the Durham area and want to help, or if you're in Chicago and want to go with Bob in the "big RV", let us know!!

I've posted some new photos on the View Photos tab, so check them out!

We Win in the End,

Sonya

Thursday, February 5, 2009 9:07 PM CST

We have been very busy and dealing with some illness, but everyone is doing better now!

Jack had his horse riding therapy today and is really doing well. Yes, they ride outside (in the barn) even though it's freezing here in Chicago. Bob said Jack did really well and was picking out the red or green rings when he was asked and patting the horse to "walk on". This has been an ongoing issue for him as he likes to make other people do things (even patting the horse!), so we are excited that he is doing this. He is also doing a good job eating by mouth, although he still prefers foods that are either pureed or super crunchy (chips).

John and Christopher now have a teacher who comes to our house 4 days per week. If Christopher is bored, he has a tendency to close his eyes and just tune things out, and he was doing that today with the teacher. Bob got after him and told him that he needed to pay attention and that he couldn't just shut his eyes and tune out. Of course, after Bob does this, Christopher starts smirking. Then Bob told him that he can't just sit there and smirk, he needs to pay attention, so Christopher behaved for the rest of the lesson. The teacher was a bit amazed as I don't think she thought that Christopher had been intentionally blowing her off! He did this when he was 2 with the speech therapist, too, so he is still the same! John, of course, was laughing hysterically while Christopher was getting in trouble with dad. They are true brothers! John's top front teeth are coming in and one is pretty crooked, so it looks like braces are at least in one child's future!

We Win in the End,

Sonya

Sunday, January 25, 2009 10:04 PM CST

Hello! I'm pleased to report that Jack is doing much better and has returned to school. He was very sick this month--he had not been this sick since November 2005--so we're glad that he is doing better. We had his IEP meeting with the school this week and it went well. The teachers are working with Jack to make him want to actively engage in activities rather than be a "passive observer", so we have been praying that he will want to be more involved! Jack actually turned 5 on January 15, but he was so sick that we delayed his birthday party and will celebrate at the end of the month.

As part of the transition to being a "big boy" and 5 years old, Jack got a "big boy" bed today. Actually, it is John's old bed as John and Christopher got new adjustable beds. We have become good friends with Mark of Verlo Mattress in Naperville, and he had great ideas for boys' beds. Since Verlo has a nationwide presence, we actually will be putting one of these adjustable beds in each of the Houses of Hope. The beds are made of a special foam that is used by hospitals for coma patients, so the boys are less likely to get hot spots and skin breakdown. The beds also adjust at the head and the feet and they vibrate! It doesn't get much better than that! Christopher and John love their new beds and get very excited about going to bed. Combined with their star projector that they got for Christmas, bedtime is pretty exciting now! The other night Bob and I went in to check on them at 11:00 and they both were still wide awake and looking at their stars. Jack, meantime, was extremely pleased to get a new bed--he was all smiles. We're hoping he just doesn't fall out!

I have been having a lot of problems with my back and have visited a few doctors this week, so I'm hoping that gets better soon.

Praying for summer!

Sonya

Friday, January 16, 2009 12:27 AM CST

If you think it's cold where you are, keep in mind that it was -24F here in Aurora yesterday WITHOUT the wind chill! It is supposed to warm up to 24 tomorrow so that will be a 50 degree improvement! Amazing!

Bob and I just got back from spending a few days in Cancun. It was absolutely lovely and the first "real" vacation we've had together by ourselves since I can't remember when. Bob's sister and mother came to watch the boys, plus John and Christopher's nurses worked extra hours, so we were able to get a few days away. Everything went well until the night before we came home and Jack got very sick with vomiting and diarrhea. He is still pretty sick now, a few days later, but he is definitely getting better. Last night it was a bit scary as Jack was covered with hives and very shaky--it seems that when he gets sick his immune system really acts up and the graft vs. host issues come back in full force. Plus, when he is tired or sick it is harder for him to control his limbs, so he gets much more shaky. We gave him Zyrtec for his hives and he is no longer throwing up, so he appears to be moving in the right direction. I caught a milder version of what Jack had and was down for the count yesterday, but I seem to be doing better today.

John was fitted for a TLSO brace for his scoliosis, which he has been wearing for a period of time every day. Part of his chest is pressing on his lung due to the curvature of his spine, so this brace helps to straighten that out. He is not a fan of this brace at all! Christopher should be getting his brace sometime next week.

We also got a new reclining love seat at Costco for the boys to replace the "tumor" beanbag that they have been sitting in during the day. The love seat provides more support in their braces and it's also easier for us to get them in and out of than the bean bag.

We're hoping for health and warmth soon!!

We Win in the End,

Sonya

Sunday, January 4, 2009 6:37 PM CST

Happy New Year! We are doing good right now. It's not nearly as cold here in Chicago and the snow is mostly gone, although I'm sure that won't last long! :-)

Yesterday we got nurses and babysitters for all of the boys and were able to get out for a bit. One of the things we looked at was an adjustable bed, and we think we found one at Verlo that will work. Verlo customizes each of their mattresses, and the prices were actually cheaper than what we were looking at at Sears, so that was great. We're looking at getting a bed for Christopher, as he has a tendency for reflux and throwing up a bit more and we think an elevated/adjustable bed would be very helpful. We'll then give Christopher's old bed to Jack, who needs to graduate out of his crib!

John's favorite character of this holiday season was Frosty. He really liked the Frosty the Snowman movie, so we got him the DVD for Christmas. He also got a couple of animated Frosties as gifts, so he really enjoyed that.

We had our House of Hope "reopening" on December 21, and a new family moved in. We were able to paint, put in the flooring and get it completely furnished with custom furnishings, and it looks great. Click here to see some of the photos!. We will be opening up a second House of Hope next month, so click here for more information. We're so excited that we will be able to help families out in this way.

Have a blessed New Year!

Sonya

Saturday, December 27, 2008 1:24 PM CST

**Update** I forgot to mention that Jack appears on the cover of the Friends for Therapeutic Equine Activities Christmas card! FTEA is the organization that allows Jack to ride horses, and it has been so beneficial for him. You can see the card by clicking here. The picture was from last winter and you can see how chubby Jack's cheeks were!

Friday, December 26, 2008 12:49 AM CST

Merry Christmas! We are thankful for the blessing of Jesus' birth during this holiday season and wish for all of you to experience the joy of his power and presence in your lives.

We had a very white and very icy Christmas this year! My sister's family came from Iowa, and we had a fun time with each other and enjoying each other's company. My nephew tried sledding for the first time and said he would never do it again! We tried to convince him that it's better when it's not so icy, but I don't know if we were too successful! John and Christopher had a great time these past few days, and have fallen asleep as soon as they got into bed. They got a really neat gift--it projects animated stars onto the ceiling like a planetarium--and they thought it was pretty cool. They also got Frosty movies, books, and animated snowmen, which generated some good laughs. Jack was very excited to get his favorite food--Ritz Sour Cream 'n Onion chips--in his stocking and started digging in right away. He also enjoyed watching cousin's new Thomas train track and thought it was pretty cool. We actually had our own mini version of Grand Central Station here yesterday, as we had a Thomas train, a Christmas train, a Lionel train and a race car speedway all going at the same time! A little boy's dream come true! Last night my sister and I drove the kids around to look at lights, and some of the displays were pretty cool. People had done their front yards and then created scenes in their front windows with backdrops and everything. Two of the houses had the "leg lamp" from "The Christmas Story" movie, which was pretty funny. A neighbor of one of these elaborately decorated houses did something very creative and just had a giant lighted arrow pointing at the decorated house, so people would know the "real" house to look at!

We are hoping to stay warm over the next few days and wish you a Happy New Year!

We Win in the End,

Sonya

Monday, December 15, 2008 11:35 AM CST

Well it looks like we'll definitely have a "White Christmas" here in Chicago this year! It has been cold and snowy with no change in sight. Winter is here!

We've all returned from Duke, although Bob will be going back down to coordinate the delivery of furniture and other items to the House of Hope later this week. Our next family will be moving in soon, so we want to make sure that all of the new items are in place. The apartment has been painted and wood flooring is going in this week, so it will be very nice!

John picked up Christopher's cold and Christopher is getting over his, so we have been watching them pretty closely and doing all of the necessary respiratory treatments.

A few funny stories I need to share. First, John and Christopher were scheduled to get their MRIs at approximately the same time. In the past, they had always been fully sedated so I wouldn't go into the MRI room with them. However, this time, they decided to use a form of valium to just make them very relaxed, but they would still be awake. John had his MRI first, and I just sat in the corner of the room and read magazines and it was overall an uneventful experience. It was Christopher's turn after John, and I made sure to remove my jewelry, cell phone, etc. before I went into the room as Christopher's tech was very strict and wanted to make sure I was following all of the guidelines. I was talking to Christopher before they put him in the MRI tube and noticed that I started feeling a significant tingling on the back of my head, at which point I realized that I had not removed my hair clip. I promptly took it off and set it in the corner of the room, and the tingling stopped. So I sat down in the corner and started reading my magazine when suddenly Christopher threw up (I think it was a reaction to the medication--I do the same thing with oral anesthesia!). I ran over to the MRI tube to grab suction and make sure Christopher was on his side, at which point I was about 12 inches from the entrance to the tube, when I suddenly feel my hairclip getting sucked out of my head and "clinking" on the inside of the MRI tube! I had forgotten that I had a little side hairclip and hadn't taken it out. All I could think was that my 50 cent Goody hairclip was going to ruin a multi-million dollar machine and I would somehow get the bill for it! Thankfully, we were able to suction Christopher and get him comfortable and the tech was able to find my clip (of course after appropriately reprimanding me!). The MRI then proceeded as "normal". A bit of drama for the day!

Our other MRI story occurred with Jack. Typically, when Jack gets an MRI (he had his 5th one last week--we're trying to get a "frequent user" discount at Duke but so far they aren't offering one!) he requires the maximum of amount of anesthesia for a child his age and size. He fights going to sleep and it takes forever to get him fully sedated for the MRI. However, the flip side is that once he's done with his MRI, the medical staff will not let us go until he wakes up and demonstrates that he is okay. Jack typically takes forever to wake up and this time was no different. They were pulling his eyelids open, tickling him, taking his shirt off so he would get cold, rolling cold soda cans on his chest so he would get even colder, and nothing worked. Finally, in desperation, Bob pulled out a bag of Jack's ultimate favorite food--Ritz Sour Cream 'n Onion chips. Bob put the bag under Jack's nose (the scent is very strong) and started blowing so that the scent would travel up to his nose. Well, it was like magic! Jack immediately woke up and began eating his chips! So who needs smelling salts?!

John and Christopher are getting fitted for scoliosis braces over the next couple of weeks, as their lower spines are starting to curve from constantly being in seated or lying positions. We may also need to look at more supportive seating for them.

We Win in the End,

Sonya

Tuesday, December 9, 2008 8:29 PM CST

Greetings! We hope you all are doing well and getting ready for the holidays!

We had an eventful Thanksgiving in that Christopher was pretty sick so we weren't able to leave for Duke and North Carolina until the Saturday after Thanksgiving. Of course, that meant that we got stuck in all of the traffic on Sunday evening in North Carolina, with about 250 miles of bumper to bumper traffic in bad weather. We thought we would never get to Duke! Once we did, we had a nonstop schedule with medical tests going all day. John and Christopher had most of their tests last week while Jack is getting most of his tests this week. Bob got severely ill last week and was unable to get out of bed most of the time, so thankfully my mother was here and was able to help me shuttle the boys from one appointment to another. We wanted to get good baseline test values for John and Christopher while Jack is getting his 3-1/2 year post transplant tests. Sometimes I can't believe it has been that long since Jack's transplant, while on other days it seems as if it has been a lifetime.

While Christopher is now pretty much recovered, John seems to have picked up whatever Christopher had and is pretty sick now. I am hoping that I can avoid all of this sickness around me and stay relatively healthy!

We have almost finished some of the "beautifying" touches on the House of Hope. Bob is finishing up the painting this week and the new flooring and furniture will be going in next week. I think the apartment will look great once it's fully decorated and furnished. We still need a few more items, so if you would like to purchase some things, please click here to go to the House of Hope registries. You can purchase a holiday present for a friend or loved one, and if you e-mail us with the recipient's address, we can send them a card notifying that an item was purchased for the House of Hope in their honor!

We Win in the End,

Sonya

Monday, November 24, 2008 7:48 AM CST

It is snowing this morning here in the Chicago area and it looks like winter is definitely here early this year!

The boys are all doing well and are in good health. This past week, John lost a tooth and Christopher lost two teeth, so they are really starting to look like toothless wonders (see photos on the View Photos tab)! Appropriately, they all went to the dentist and got a clean bill of health. As usual, John and Christopher did great at the dentist while Jack had to be held down by three adults, so needless to say, going to the dentist is not one of Jack's favorite activities!

Last week we all went to the planetarium at our high school for family night. They showed a movie on going to the moon, and then they darkened the room and showed the stars as viewed from our town, and showed how they look different at various times of the night. Both John and Christopher were really intrigued by the stars, and Christopher had quite a look of amazement on his face as there was something ABOVE him that he could see!

On Thursday, we are taking the RV and heading down for Duke. All of the boys will be getting tests by the various doctors, and Jack will be getting his 3-1/2 year post transplant studies. We're going a little early and plan to camp for a couple of days on the ocean in North Carolina. None of the boys have seen the ocean before and some of our friends will be meeting us, so while it won't be warm enough for swimming, we should be able to take some walks along the beach. The campground we're staying at has handicapped beach access and the jogging strollers work pretty well in the sand. While we're down at Duke we plan on painting the House of Hope and getting it ready for the next family to move in.

We would appreciate your prayers for safe travels and good test results!

We Win in the End,

Sonya

Tuesday, November 11, 2008 10:16 AM CST

John and Christopher officially turned 7 last Wednesday! Yeah! Bob's parents, Auntie Kim, Uncle Larry and cousin Kyra were all here to celebrate. Kyra is 13 months old and lives in California, and she absolutely loved John and Christopher (she loved Jack, too, but he wanted nothing to do with her!). The boys enjoyed opening their presents and they had some frosting from their cakes. We played with the new flying toys they got and they were all smiles. I was able to get some good video, so I will be putting that together and hopefully posting it shortly.

We went to Jack's parent-teacher conference this past week, too. Jack is working with augmentive communication devices such as switches with him. They are also trying to get him to do more routine activities such as take his snack out of his bag himself, take off his coat himself, etc. Jack many times likes to make other people do these type of tasks for him, so this is something we want to work on. He even does this with his horse riding--he wants other people to tap the horse to make the horse walk on rather than do it himself. We are hoping that by having him do these tasks himself and using switches that he can understand that he will have more "control" and therefore "like" to do more of these tasks. That's the theory anyway!

We finished another house project two weeks ago and knocked out the wall between our main room and Bob's old office. This gives us a lot more room in our main room, which gets especially crowded with wheelchairs, bean bags, etc. We moved Bob's office into our front room, so he now has more space, too.

The boys are continuing to do whirlpool therapy a few times per week. Bob made a chair out of PVC that the boys can lay in while they're in the whirlpool, so they can soak in the water. John likes to lay in the chair and watch Star Wars--he's just like his dad!

We Win in the End,

Sonya

Tuesday, October 28, 2008 4:13 PM CDT

The weather has turned cold here in Chicago and we had some very brief snow flurries on Sunday. Winter is coming already! Who ordered this??

John, Christopher and Jack all received Botox shots in their legs yesterday. John and Christopher did really well, and John even laughed during his shots (it could be because they gave him too much numbing cream!). Jack, of course, screamed but that was largely because he had to be pinned down by two adults, and he knows when he is pinned down, good things don't happen!

Jack has been doing well with sitting, and we got him set up with a small computer station so he can learn to use a switch (see the video above). I have also been working with John and Christopher so they can use a switch with the computer, too, and they were able to activate it a couple of times. We also found some good videos on YouTube of children's authors reading stories, and John thought they were funny. Bob and our nurse have been working with the boys and doing whirlpool therapy and standers three times per week, and the boys thoroughly enjoy it. Bob can get John and Christopher to sit perfectly straight in the whirlpool and they absolutely love it. They're pretty wiped out when they're done, but they truly enjoy it.

Bob's parents and sister are coming Saturday and will help us celebrate John and Christopher's 7th birthday next week! How exciting! For their birthdays, we are planning to take the boys to the children's museum, which has a lot of activities that the boys can participate in.

We Win in the End,

Sonya

Monday, October 13, 2008 7:57 AM CDT

Bob and our other Team Evanosky runners were all able to finish the Chicago Marathon yesterday! Once again, the temperatures were very warm, although not as warm as last year when they were forced to cancel the marathon early. Bob ran the course with our friend and fellow Team Evanosky runner, Will Wong. Bob has lost quite a bit of weight since last year, and he said it made a positive difference in his running. Both Will Wong and Pat Ward (another Team Evanosky runner) were able to stop by this weekend and get pictures with the boys, and we told the boys that Pat and Will were running to help little kids like them get better, and the boys have us big smiles. I am hoping that Bob and I can do the marathon together next year!

I have also been looking into races that would allow me to push one of the boys and I am hoping that next year I can start doing that. There is a gentleman, Dick Hoyt, who has become famous doing runs and triathlons with his son Rick who has cerebral palsy. They started when Rick was 11 and he is now 41. I contacted Team Hoyt about doing this with our boys and they gave me some good resources to look into. I found there is a running group in Virginia Beach that is a club of runners and pushers, although I haven't been able to contact anyone from the group. There is also a gentleman in Canada who pushes his daughter and he has set up a website at www.ontherun.ca and a father in New Jersey who has started doing triathlons with his disabled son (click here to see an article from this summer). A lot of races do not allow children to be pushed due to safety reasons, so I am going to start investigating this now.

We have decided to take John and Christopher out of school for the winter and have them receive schooling services at home. We spoke with our doctor and she thought that it would be best, especially given their most recent illness. We began filling out the application this weekend, so I don't know how long it will take to start. We are also still working with the school to determine the best placement for John and Christopher once they return to school in the spring.

We have been getting a lot of items for the House of Hope, but we still need more. We have several registries on Bed Bath & Beyond, Target and Amazon with prices ranging from $2 to $2,000, so if you would like to help out, please go to the House of Hope page and click on the registries at the bottom to find out what is still needed. Remember that your gifts are tax-deductible, and you will receive a receipt for your donation from The Evanosky Foundation.

We Win in the End,

Sonya

Tuesday, September 23, 2008 10:27 AM CDT

It has been a crazy month at the Evanosky home! The first two weeks, John and Christopher (along with me and Bob) were very sick. The boys had very bad colds that turned into pneumonia, so they were on oxygen and antibiotics. Bob and the nurses worked very hard, and the boys were thankfully able to stay out of the hospital. John and Christopher have gotten better and are now attending school again. They are in the first grade, which is much more curriculum-based than kindergarten, so we are trying to work with the school to get a program that best fits their needs.

Meantime, Jack is going gangbusters. He is now getting 75% of his calories each day through food he is eating by mouth! This is huge! Favorites are chocolate or vanilla pudding, chocolate or key lime yogurt, spaghetti o's and crackers. Yesterday, Bob brought him to a work lunch with me and Jack sat in a booster chair and was a model child, eating his crackers and not complaining or whining. It was amazing, since normally if Jack has to sit for a few minutes without a movie he is screaming and whining. He is also doing great in physical therapy and Bob said he took 15 steps (assisted) last week during his session. I tell him every night that he is a living example of God's faithfulness! We are so happy for this development and are praying that he will continue to improve. Jack is now 3-1/2 years post-transplant, so this is a long journey, but worth it.

Bob is gearing up to run the Chicago Marathon on Sunday, October 12. This will be his third marathon that he has run for the Foundation, and if you want to make a donation to support him, you can click here. Bob has been doing a lot of great stuff with The Evanosky Foundation, and we just opened up our House of Hope last week in Durham! Currently an MLD family going through the transplant process is staying there, and we're hoping it can be a blessing to many families in the future. If you want to help furnish the House of Hope, we have several gift registries available at Bed Bath & Beyond, Target and Amazon. See the House of Hope webpage for more information.

We Win in the End,

Sonya

Tuesday, September 2, 2008 4:50 PM CDT

This has been a busy week! John and Christopher started first grade last week and attended school all 5 days. They go for 4 hours each day and are able to attend with their nurses, who also are their assistants. The boys are in separate classes and the nurses said that none of the kids from their kindergarten classes were in their new classes, and many of the kids didn't know how to interact with them. However, by the end of the week, they had friends in their new classes, too.

Jack also started school and is attending 2-1/2 hours per day, 5 days per week. He has been doing amazing. As of last week, he has started eating food by mouth on a regular basis. He is eating 2 containers of baby food peaches and 1-3 containers of vanilla pudding each day, along with crackers. This is huge and it seems like a switch suddenly turned on for him! We have been using his movies as a motivation tool, and if he doesn't eat his food, then we shut off his movie. It has been very effective, and he was able to sit at the table with all of the grown ups and eat WITHOUT COMPLAINING this weekend, which was amazing!

Speaking of this past weekend, we went camping outside of Chicago with some of our friends. We all went swimming and Jack was able to ride down the slide with the kids and also go horseback riding for a few minutes. Unfortunately, early on the morning of Labor Day, Christopher started vomiting and had a high fever so we had to return home and now he and John are both very sick. I think I may have what they have as well, and it involves a lot of congestion and stomach pain, so it is not fun. We're hoping they get better quickly!

I was in India last week and it was very interesting. Many of my team members work there, and I found them to be very bright and motivated. In terms of wealth and resources, the disparities between the "haves" and the "have nots" are very prominent, and it is not uncommon to see people living in a small tent with no cooking or restroom facilities next to a 5-star hotel or office building. I saw a few disabled people there who primarily got around by using boards with wheels, similar to the "creepers" that auto mechanics use. It made me very glad that my children were born where we have good medical care and a strong support structure to help them. We know firsthand from Cristopher "Junior" Luna (see www.caringbridge.org/visit/cristopherluna) that it is very difficult to have this awful disease in a country that has minimal resources.

We Win in the End,

Sonya

Saturday, August 23, 2008 10:49 AM CDT

It has been a long time since I've posted an update, so apologies for the delay!

The half marathon went very well! I was able to run the entire race and was very pleased with my finish time as I finished 15 minutes faster than my goal! My mom also beat her goal time by 30 minutes, so we were happy! The weather was absolutely perfect on race day, and the course ran through Grant Park and several of the museums in downtown Chicago, with the home stretch along the lakefront. The Evanosky Foundation was able to meet its fundraising goal for this race, and now we're looking forward to our next set of runners racing in The Chicago Marathon on October 12.

John and Christopher start first grade on Monday. They went to open house at school yesterday and met their teachers and stocked their very own desks with their school supplies. They will be in separate classrooms and will attend school from 11:30 - 3:30 every day. They are excited about going back to school, and they have been healthy with the exception that John has been battling back-to-back urinary tract infections.

Jack starts school next Wednesday. He will go to preschool in the mornings, 5 days per week. He will have the same teacher as he did last year, so that will be good for him to be able to continue to develop his skills. He is also getting much better with eating and is chowing on crackers (Ritz Sour Cream 'n Onion are the hands down favorites!).

Bob has started his training for the Chicago Marathon and hopes to have his best finish time ever this year! Meantime, I leave for India for a week on business to visit half of my team which works in one of our accounting centers. I have never been to India before, but I have all of my shots so I'm hoping that I'm able to make it through without getting sick.

We Win in the End,

Sonya

Thursday, August 7, 2008 3:00 PM CDT

I'm running the Chicago Distance Classic half marathon on Sunday, and I think I'm ready! My mom, along with Kevin and Jennifer McKinney, Don Tomsik, Deanna LaMartina, Mollie Niederpruem, and Will Wong will all be running or walking, too. We are supposed to have good weather and it starts early enough at 6:30 a.m. so that it should be cool. You can track our results at www.chicagodistanceclassic.com/results.htm.

The boys all finished school last Thursday and start again on August 25. Jack did very well and met all of the goals that were set for him at the beginning of the summer session. He is doing great with his flexibility and sitting up, and his strength is steadily improving.

John and Christopher had their final Buddy Baseball game on Tuesday. They both got baseball trophies and Christopher even "caught" a hit against his chest, which John thought was hysterical. John loves to play baseball and smiles the whole time we are there. Jack, of course, can't stand to be in one place so another boy's grandma walks him around until she's too tired!

Despite all of these good things that are happening, it is still sometimes very hard to cope with the constant pressure and vigilance that we have to keep up to maintain the boys' health. We ask that you please pray for strength for Bob and me that we can continue "continuing on". I read a great quote in my devotional today that stated "we conquer by continuing." So true.

We Win in the End,

Sonya

Wednesday, July 23, 2008 1:10 PM CDT

Last night John and Christopher had their third Buddy Baseball game. They did a great job playing catch and hitting the ball. They're also much looser now when we help them throw the ball, and they really enjoy it.

Last weekend we went camping in Michigan at a beautiful campground. It was landscaped, with each site having a concrete pad and patio, not to mention a beautiful pool with access to the river. It kind of reminded me of camping in a giant backyard! We took all of the boys swimming, and once again, Jack immediately fell asleep after being in the water for about 20 minutes. He loves swimming and seems to instantly fall asleep afterwards, so it must relax him. John and Christopher enjoyed swimming, too, and had huge smiles. Jack and I went bike riding among some Amish farms, and the mothers and their children gave us very curious looks. It was a pretty rural area so I doubt they see many moms out bicycle riding with their kids! Bob did a bit of fishing but got no bites, so he'll try again next time. All in all, we had a great time, but it we decided it was a bit far for just a weekend trip.

Only 2-1/2 weeks until I run my half marathon, and I would love your support (see my letter below)! I ran 7 miles on Sunday night and I'm supposed to run 10 miles this weekend. It amazes me that I can actually DO this! The thing that keeps me going is the boys, so if I can help them, it's worth it.

We Win in the End,

Sonya

Friday, July 18, 2008 8:55 AM CDT

All,

I will be running the Chicago Distance Classic Half Marathon next month on behalf of The Evanosky Foundation to raise money for MLD research, and below is my fundraising letter. Several of your children either currently are or have been "MLD Heroes" and have been teamed up with our runners. Please feel free to forward this on to any people who may be interested in supporting our cause and fixing MLD for good!
****************************************

Two dates stick in my mind as dates when the world as I knew it ended: January 22 and February 14, 2005. No, these are not dates that commemorate happy events such as a birthday or anniversary. These dates were when joy was ripped out of my heart. On January 22, 2005, I learned that my twin boys, John and Christopher Evanosky, were diagnosed with metachromatic leukodystrophy, a rare but terminal
disease in children that causes their nerves and brain to deteriorate. My one spark of hope was that it was highly likely that my youngest son, Jack, did not have the disease. However, this hope was also dashed on February 14, 2005, when we learned that Jack, too, had this horrible disease.

Since then, Jack has received an umbilical cord stem cell transplant
at Duke University and three years after his procedure, he is doing well. John and Christopher have exceeded their life expectancies that the doctors originally gave us. My husband and I have fought back against this disease by starting The Evanosky Foundation, which has funded medical research to find a cure for MLD, passed a bill in Illinois that screens all babies for fatal diseases similar to MLD, and helped other families battling this disease.

On August 10, 2008, I will be running my first half marathon at the Chicago Distance Classic. I have never been a runner in the past, and if you knew me in college, you know that I dreaded the twice annual 3-mile run that we had to do for our physical education classes, which I barely finished. Running this half marathon allows me to conquer something that has always been a challenge for me. As I'm running, I think about my boys and how wonderful it would be if they could simply take a step, and I think that if my running can help raise money to make that a reality, I will run forever.

My goal is to raise $5,000 for The Evanosky Foundation to continue its mission, and I would appreciate if you could help to make that goal possible. Any gift you provide is tax deductible and you can donate online by going to www.evanoskyfoundation.org and clicking "Support a Runner Now". You can also send a check to The Evanosky Foundation at P.O. Box 9234, Naperville, IL 60567.

Please help me to make this a reality not only for my boys, but for all of the other children who suffer from this terrible disease. With your help, we can make MLD a treatable condition, and not a death sentence.

We Win in the End,

Sonya Evanosky

Monday, July 14, 2008 2:02 PM CDT

The boys all had a great week this week! Both John and Christopher lost their top left teeth, so they look very much like 6-year-olds with their top and bottom front teeth missing, although John's permanent bottom teeth are starting to come in now. They are very proud of their tooth fairy "loot" that they have been collecting and we put it in their piggy banks at night.

This weekend we ended up camping at two places in the Chicago area. The first place was a big disappointment and was a mosquito-infested mud pit, so we ended up leaving on Saturday morning. We spent the rest of the day at one of the forest preserves, and Bob took John and Christopher fishing while I took Jack for an 8-mile run. I am training for the Chicago Distance Classic half marathon on August 10, and Jack has been my training partner. I figure if I can do all of my training with one of the kids, the actual half marathon will be easy! John and Christopher really liked sitting by the lake and fishing--John fell asleep and Bob and Christopher talked and fished, which Christopher enjoyed. After that, we moved to the Jellystone Park campground on Saturday night, which was very nice. We took the boys swimming on Sunday and they were grinning from ear-to-ear. We have found that whenever Jack goes swimming, he instantly falls asleep as he seems to get very relaxed and calm--it's great!

Jack is progressing with speech therapy, which has been primarily focused on getting him to eat by mouth. Our goal is to try and stop feeding him continuously throughout the day through his tube and to get him to eat by mouth and then follow up with a bulk or bolus feed afterwards if he doesn't eat enough. He is also doing well in physical therapy and regularly pushes himself up into a sitting position now. He can actually sit extremely well in a cross-legged position and is also starting to side-sit.

All of the boys are going to summer school for 2-3 hours each day, Monday through Thursday. Also, John and Christopher started Buddy Baseball this past week. This is a great 6-week program on Tuesday nights where they each have a buddy who helps them play baseball. Each of the boys have their own buddy, which this year is Susan and Alli, who are both high school girls. Unfortunately, they weren't able to fully play their game this past Tuesday since they were rained out, but they got their team assignments (they're on the St. Louis Cardinals), shirts and buddies, so it was a good first meeting. We were excited to find that two other friends are also on the same team, so it should be fun!

We Win in the End,

Sonya

Sunday, July 6, 2008 9:25 PM CDT

I've just posted some new pictures on the View Photos page, and check out the Photo Page link below for even more pictures from our trip to South Dakota.

This week I had a chance to take Jack to his horse riding lessons and he did great. He really sits up straight and does a good job on the horse. His flexibility and trunk strength have improved so much that we signed him up to start riding twice a week!

All of the boys start summer school tomorrow, so our routine begins again. We all enjoyed the neighbors' fireworks this weekend and went swimming in our "cooled down" hot tub today, so we're all relaxed and ready to start again.

Have a blessed week!

We Win in the End,

Sonya

Tuesday, July 1, 2008 9:45 PM CDT

We just returned from a 10-day trip to the Black Hills in South Dakota. We were planning to visit North Dakota, too, but we had a change of plans and returned early. The boys all did great! Christopher lost one of his front teeth, the boys all got to go fishing, we rode a steam train, and we saw a lot of wildlife. My sister and her son came along, too, and we met Bob's parents along with her sister and husband, so we had a big crew. I will be posting some pictures soon!

A good quote that I want to pass on from Dr. Michael Easley, President of the Moody Bible Institute: "Ask God not for a miracle but for an immovable faith. If you get a miracle, you'll simply want for another."

We Win in the End,

Sonya

Monday, June 16, 2008 8:58 AM CDT

This past week, Christopher developed a cold that went straight to his chest. Our doctor thinks it may have been influenza H, so we had been giving him multiple breathing treatments per day plus antibiotics to try and get him better. This morning, he appears significantly better and his congestion seems to be gone, so we are very thankful since we are planning on leaving for two weeks this Saturday for camping in South Dakota and visiting with my grandparents in North Dakota. Because Christopher was sick, I stayed home with him and John this weekend. Meantime, Bob and Jack took the RV and met some friends for camping in Michigan. They had a great time hanging out with everyone, and Jack especially enjoyed the one-on-one time with Bob. They went swimming in Lake Michigan and Jack played with all of the other kids and watched movies until late, so he was in heaven. In fact, when they pulled into the driveway yesterday, he immediately started crying!

Bob left last night to fly down to Duke as he was asked to speak at the Ethics in Cellular Therapy Conference. The conference is focused on discussing treatment alternatives for children with inborn errors of metabolism and discussing the ethics involved. An "inborn error of metabolism" means that these children were born with their bodies missing something such as an enzyme, protein, etc. which allow the body to work right. Since children with MLD are missing a particular enzyme, MLD is considered to be an inborn error of metabolism. There are many good speakers and Bob is the only "non doctor" who is speaking ( click here to see the full agenda). He is also meeting with some representatives from the CDC regarding newborn screening as well as with Dr. Maria Escolar at the University of North Carolina, so he will have a busy trip!

We Win in the End,

Sonya

Monday, June 9, 2008 1:48 PM CDT

All of the boys finished up school last week, with their last day on June 4. Unfortunately, John wasn't able to attend because he had a fever, but it did not develop into anything. The boys will all be attending summer school this year, too, and will start after we return from our South Dakota vacation on July 7.

The weather has finally warmed up here in Chicago! I am running for The Evanosky Foundation and training for the Chicago Distance Classic Half Marathon on August 10, so for the past two weekends, I have taken Jack on my Saturday morning runs. We have been running at the prairie preserve near our home, and the weather has been warm and windy. The trail itself has some rolling hills, so if I am running against the wind, uphill, pushing Jack in the jogging stroller, it can get a bit arduous. Jack loves it. He also serves as a tough personal coach/drill sergeant, because he immediately cries if I stop, so needless to say, I don't take a lot of water breaks! Jack and I also went bike riding yesterday and I had him riding on the back of my bike. He enjoyed it, but kept trying to push me out of the way.

Bob and I went to the Naperville Home Tour this weekend while the nurses watched the boys. The home tour included 20 homes in the $1-$2.5 million range. They were nice, but we concluded that none of them would work for us (even if we COULD affort them!) because they were not disabled accessible. One home did have an elevator, but there still were a lot of stairs and the outside patio and deck were not accessible, either. We did get some other ideas that we are looking into that may be helpful, though. Meantime, the nurses had the boys running through the sprinklers in their wheelchairs! John and Christopher enjoyed it, but they said Jack got irritated that it took too long for the one sprinkler to complete its cycle and get him wet again!

We Win in the End,

Sonya

Thursday, May 29, 2008 10:42 AM CDT

We had a great Memorial Day weekend at the Three Bears Camping Resort in Wisconsin attending the STARS Family Retreat with our church. The STARS program is for children with disabilities at our church, and about 25 families attended. John and Christopher's Sunday School buddy, Steve, was also their buddy for the weekend, so all the boys were also able to go to the waterpark at the campground. Jack liked the kiddie waterslides the best. We had to go down with him and he's pretty heavy, so that was a work out carrying him up and down the stairs! All the boys loved the hot tub--John and Christopher fell asleep and Jack just loved floating. Christopher and Mr. Steve were also in the talent show, with Mr. Steve helping him to sign the words to a song that he learned.

Christopher lost another tooth the other night. He was very happy with his "loot" from the Tooth Fairy, and held on to his quarters for half an hour until Bob told him he had to go to school!

John and Christopher were in a musical at school last Friday entitled "The Mice from Outer Space". They both had speaking parts by using their Go Talk switches. I wasn't able to attend, but Bob captured it all on video. Christopher was smiling and his assistant helped him do all of the hand motions for the musical. John, on the other hand, pretty much slept through the whole thing! The boys also had a Letter Parade at school yesterday, so we decorated their wheelchairs with their favorite letters. John chose "J" and Christopher chose "C", so they had large "J"s and "C"s on their wheelchairs. They are done with school next Wednesday, but will be going to summer school for a few weeks as well.

Bob and I were able to go to Florida for a couple of days earlier this month and had a "Discovery Channel Moment". We were walking on the beach at night and saw what appeared to be a large rock at the edge of the beach, but we did not recall seeing the rock before. Suddenly, the rock began moving and breathing heavily, which was a bit frightening! The "rock" was actually a large, leatherneck turtle, which was coming on to the beach to lay her eggs! Leatherneck turtles are critically endangered, and according to the Florida Fish and Game, only about 35 lay their eggs on Florida beaches each year. They said the turtles are typically 6 feet long and weigh 2000 pounds, and I would say the turtle we saw fit those dimensions--she was huge! She started coming up onto the beach where there were a lot of beach chairs from the hotel, so Bob and I were moving the beach chairs out of her way. When she got about 50 feet onto the sand, she started creating her nest by flinging the sand and moving around. We sat and watched while she dug her nest and laid her eggs and it was pretty impressive. She was working very hard and breathing heavily--when she exhaled, it sounded very prehistoric and loud and her whole body seemed to deflate. It gave a whole new meaning to the term "cleansing breath"! We unfortunately didn't have our camera, but it probably would have scared her too much anyway, and the next day we saw that they had roped off the area where she laid her eggs so that they wouldn't be destroyed. Pretty cool!

I'll try to post more photos soon!

We Win in the End,

Sonya

Thursday, May 15, 2008 10:55 AM CDT

This past weekend we went camping at the Indiana Dunes State Park on Lake Michigan in northern Indiana. Although it was a bit cold, we had a good time. We stayed in the state campground in an accessible site that had a wider concrete pad so that we could easily have the boys maneuver around the campsite in their wheelchairs and sit by the fire. We took a walk down to the beach, but since it is almost impossible to push wheelchairs in the sand, we were able to only look at it from the parking lot! We then drove over to the Indiana Aviation Museum, where they had several vintage warbirds, so Bob enjoyed talking to the guys and seeing the old airplanes. John and Christopher enjoyed it, too, since they could get close and see them. Jack, on the other hand, liked sitting in the toy airplane for about 10 minutes and then he was done! I am sure he wanted to be really flying as opposed to just pretending! We had campfires at night and roasted marshmallows, and it was very nice. Again, Jack wasn't a sit by the fire kind of guy, but John and Christopher got bundled up in their coats and liked watching the flames. It was a nice trip, close to home, and we're starting to figure out what works well and what doesn't.

Jack got a bit of a cold this past weekend, which he promptly passed to me and which John now has. Fortunately, it is a fast moving cold and doesn't seem to be too bad, and Jack is nearly fully recovered.

We're looking forward to getting the boys outside this summer and being healthy!

We Win in the End,

Sonya

P.S. See new photos on the VIEW PHOTOS tab!

Thursday, May 8, 2008 8:01 AM CDT

We had a great time down at Duke this past weekend. We drove down with all of the boys in the RV and left Wednesday night, arriving at Duke on Thursday afternoon. We had a few challenges on the way there with g-tubes falling out, throw ups, etc. but we survived! John and Christopher had never been to Duke before, and they were able to meet Dr. Escolar, Dr. Prasad, Dr. Parikh and Dr. Kurtzberg. We told them that they were the doctors who helped Jack to get better.

The weather was beautiful for the Rainbow Walk of Heroes. We were able to meet Jared Kerr, another little boy with MLD who was transplanted about a year ago. We also met Sam Spraggins, who was just diagnosed with MLD and started his transplant process this past Monday. My college roommate, Sherry, and her family were also able to join us for the walk. We were all there in our "Team Jacko" shirts, and I'll have to post a picture soon.

Jack did well. We have started calling him Henry VIII since he is just like a king ordering his little minions around. Sherry's husband rides a motorcycle and was wondering if Jack would be afraid of the loud noise, but I honestly can't think of anything Jack is afraid of. He never cries because he is afraid, and he loves to be thrown around and be a daredevil. Sherry said the only time Jack cries is when his "staff", meaning any able-bodied adult, isn't doing what he wants them to do! Isn't that the truth! He enjoyed being in the RV and playing with his little roller coaster bead toy--he played with it for hours and was just as happy as he could be!

We had a relatively uneventful trip back to Chicago and arrived home on Sunday. Once John and Christopher got settled in their beds in their room on Sunday night, I asked them if they were glad to be home and sleeping in their beds, and I got no response. I then asked them if they wished they were going to sleep in the RV, and I got big smiles from both of them! I told them that we'll be going in the RV again--in fact, we're planning on going camping this weekend--so they'll get to go back in the RV!

We so enjoy the spring/summer season and are looking forward to spending a lot of time with the boys.

We Win in the End,

Sonya

Sunday, April 27, 2008 4:32 PM CDT

It is cold once again this weekend in Chicago. We thought that was all behind us, but apparently not. We were supposed to go camping this weekend, but Bob hurt his back this week, so we stayed home, and I am kind of glad we did because it has been so cold!

It hasn't been all bad weather, though. This past week my sister, Rachel, was here from California and I took Monday afternoon off. It was absolutely beautiful and the temperature was in the high 70s. Bob, Rachel, me, the boys, and the boys' nurses all went to a restaurant and sat outside for lunch. It was wonderful and Jack was even good! Afterwards, we went into the Bass Pro Shop and saw all kinds of cool things like trout, huge stuffed bears, deer, waterfalls, and a big saltwater aquarium. It was great cheap entertainment for the kids!

All of the boys are in good health and doing well. Jack is still going gangbusters on physical and speech therapy. We bought him a special keyboard to use with the computer as he has done so well on the computer at school we want to start doing it at home. John and Christopher have been going to school and doing all kinds of book and art projects, so the refrigerator is full of artwork!

This week, we will be taking the RV down to Duke for the Rainbow Walk of Heroes, which is an annual event for families whose children have gone through the transplant program. We are taking John and Christopher down for the first time to Duke, and we hope they can meet Dr. K. We designed special shirts for our team--Team Jacko--that we can wear during the walk, and one of my best friends from college and her family will be walking with us, too. This event is always very emotional for me because there are so many good feelings seeing so many people we've talked to and become good friends with, but there is also an ache for all of the children who didn't make it. At the end of the walk is a giant balloon release and it is always very moving because we write children's names on them and it signifies how these children are free from their pain, free from their broken bodies and able to be the children they were meant to be.

With that said, we had two families contact us this week that their children have been diagnosed with MLD. One child may be able to receive a transplant, and the other is too far progressed with their symptoms. I hope there is a day in my lifetime when I won't hear these stories anymore, and that parents will know right away when their baby is born that their child has this disease and the treatment can be started immediately. We are hoping that the MLD newborn screen test will be ready within the next few months so we can begin making this dream a reality.

We Win in the End,

Sonya

P.S. I put new photos on the VIEW PHOTOS tab.

Tuesday, April 15, 2008 3:58 PM CDT

It's official! Jack is now 3-years post transplant and he is doing great! We have seen a lot of strength improvements as well as taking a few assisted steps, and he is doing really well with eating. He now expects us to share anything we're eating with him, which is a long way from not even wanting food within a few feet of his mouth!

John has also started "talking" or vocalizing a lot more. His afternoon bus driver said he "talks" with her each afternoon and we've noticed that he is doing it a lot more around the house. His "talking" noises are really more like high-pitched singing, but he always has big smiles when he does it and we really try to encourage him and tell him how much we like the way he talks.

Today is Bob's birthday, but we probably won't celebrate until this weekend as I am getting over the worst sickness I've ever had in my adult life. I was in Singapore last week for work and apparently caught something nasty there and am just starting to feel as if I can live again!

Along the lines of living again, I signed up for my first half marathon today--the Chicago Distance Classic on August 10. I will be running on behalf of The Evanosky Foundation and would love if you could run with me to support our cause. Go to http://www.chicagodistanceclassic.com or http://www.evanoskyfoundation.org/12537/12546.html for more info. As our dear friends the Trimpers would say, let's run so we can "kick MLD in the butt!".

We Win in the End,

Sonya

Wednesday, April 2, 2008 10:22 AM CDT

We are now all healthy and over all of our sicknesses! Yeah! The boys are on Spring Break this week, but we are just laying low and not doing anything special. Bob's parents and sister are coming this weekend, and Bob plans on having them all do things with the boys when they're here.

Bob called me with a very exciting report from Jack's physical therapy session yesterday--Jack actually took about 12 steps while the therapist supported him yesterday! This is really big for him! Jack has had a hard time with reciprocal motion (left foot then right foot, etc.), and has always locked his legs like a robot, but now he is doing better and bending his knees, too. His leg and arm strength have really improved in the past few months. We are planning to use his gait trainer outside as the weather gets warmer. A gait trainer is kind of like a baby walker with more supports for larger children, and we think if he can get outside and move on his own, he may be more interested in walking. Prayers are being answered!

We Win in the End,

Sonya

*UPDATE* Friday, March 28, 2008 10:15 AM CDT

Christopher woke up on Wednesday and was very sick with a high fever, very rapid breathing, and an extremely high heart rate. We thought for sure that he would have to go into the hospital, but we called the doctor and she had us give him some Tylenol and Motrin and then he seemed to stabilize. We took him into the doctor later in the day and he tested negative for flu and strep throat. So while he is still sick, he has no fever or breathing issues and has not had to go into the hospital. I am still sick as well, but can at least function. :-)

The other bummer this week is that we had to put our dog, Clancy, to sleep. Clancy has had a hard time walking, and as of last week, could not get out of the backyard and did not want to eat. Rocky was very upset and cried and ran around the house all day. He is doing better now, but he and Bob were both upset.

We had snow yesterday and this is the 7th snowiest winter in recorded Chicago history, so we are ready for April, spring and brighter days.

Monday, March 24, 2008 9:40 AM CDT

It seems that Bob, Christopher and I all have a milder version of what John and Jack had. Christopher laid around most of the weekend and seemed out of sorts, while I was completely wiped out on Saturday. Bob came down with symptoms yesterday, so we're hoping this will pass quickly!

Thursday, March 20, 2008 10:46 PM CDT

John was able to come home from the hospital yesterday. He is doing much better, but he looks like he has been in a war because of all the bruises on his arms from taking blood and his IV. Christopher was so excited to have John home--when they went upstairs for their naps, Christopher turned toward John and made vocal sounds for about 5 minutes! John also lost one of his teeth in the hospital--it came out while they were suctioning him--but the respiratory therapist got it and saved it, so we'll be getting another visit from the tooth fairy! I'm glad that everyone is home again in time for Easter!

Saturday, March 15, 2008 9:10 PM CDT

John is still in the hospital but is doing better. His fevers were spiking at 104.5, but he no longer has a fever. Now he is in the respiratory phase of the flu, and his breathing is very rough and he is wearing an oxygen mask. The doctor says there is always a risk of post-influenza pneumonia, so we're hoping that we will be able to avoid that.

We all received the flu vaccine this fall, but the doctor said that 1/3 of the people who were vaccinated have developed influenza B, which is what John and Jack have. Jack is doing much better and is almost back to normal, and thankfully, Christopher is still doing fine and has no symptoms. We are flying Bob's sister back again to help watch the boys this week as we anticipate that John may be in the hospital for 2-5 more days.

Thursday, March 13, 2008 8:25 AM CDT

Jack has been sick with a high fever since Saturday, and John picked up the same sickness earlier this week. Last night, he got to a point where our doctor had him admitted to the hospital. They did several tests and confirmed that he has influenza B. Our doctor estimates that John will be in the hospital through early to mid next week, as this is a virus that takes a long time to clear the body. Meantime, our doctor is prescribing medication for Bob, Christopher and me as a preventative measure so we don't get sick, too.

We Win in the End,

Sonya

Monday, March 3, 2008 8:55 AM CST

It's raining here in Chicago and the snow is almost gone, but the forecast is calling for more snow tonight, so our spring preview has been very short-lived!

I dropped Bob off at the airport this morning as he is flying to California for a newborn screening conference. Bob's sister, Kim, flew back here on Saturday so she could help with the kids while Bob is gone, so we're glad to have her here.

Jack had some x-rays last week and they showed that his hips are underdeveloped and his muscles are pulling his legs in, which results in his hips pushing out. He is in his stander 1-2 hours every day, but it is not enough to combat the muscle pulling and to fully develop his hips. Our doctor is now having him wear a brace at night that forces his legs to be spread and slightly elevated. So far, he has been okay with this (amazing!) but the doctor did have us give him some extra medicine at night so that he can relax more. Jack is also doing well at school, and the teacher sent a note home stating that they want to create new goals for him since he has reached most of his educational goals, so that is exciting. I will be observing him in school on Wednesday so I can see their "secret" for engaging him in activities!

John and Christopher are doing well and have been going to school. Yesterday they went to Sunday School which is always a big favorite. They most enjoy when they sing in Sunday School, and John's favorite song is "I'm in the Lord's Army" because he likes all of the motions. The boys occasionally "talk" and produce high-pitched singing sounds, and last week Christopher's Sunday School assistant said that Christopher started talking/singing during the songs. We also got a note from one of the therapists at school that they will be trying eye-blink switches with the boys. These switches can be activated by eye-blinks and can be hooked up to a computer with voice output to say "yes" or "no". This is extremely exciting and we hope that we can train John and Christopher to use them.

I just finished a book entitled "Forgiving the Dead Man Walking" by Debbie Morris. Debbie will be speaking at our church next Sunday, so I wanted to read the book prior to her visit. Debbie and her boyfriend were kidnapped in the early 1980's and she was raped several times while her boyfriend was shot and left for dead. They both survived and one of the kidnappers was eventually executed. His story was blended with another murderer's story and was the subject of the movie, "Dead Man Walking", which starred Susan Sarandon and Sean Penn. It was a very good book and I could identify with some of the questions she asked of God in trying to make sense of the tragedy that she endured. I have also been watching the Joni and Friends show on television since I find it very encouraging to see others who have gone through tragedies and who are being used by God to help people. There is so much tragedy and hurt in the world and sometimes I wonder why God allows it to happen. I don't know the answers. I do know that this is not heaven and it was never meant to be and that a person's character can be significantly developed by suffering or tragedy. When we first learned of the boys' diagnosis, I remember feeling like I wanted to die and being barely able to function. As time moved on, both Bob and I wanted to make sure that we did everything we could to make sure that another family would not have to go through what we did, which is why Bob worked so hard on the newborn screening efforts. We still have a long way to go, but I hope that God can help make a good thing come out of our tragedy and turn at least a little bit of what was meant for evil into good.

We Win in the End,

Sonya

Saturday, February 23, 2008 11:24 AM CST

We are all doing well and are healthy! Yeah! I was at a conference for work for the past few days and I'm glad to be back home now. Bob actually met me with the boys yesterday and we went walking at the Woodfield Mall, which was nice because it's big and allowed the boys to get out for a while. We stopped at the Rainforest Cafe, and Jack was mesmerized by the large aquariums they had, which was very surprising!

Unfortuntately, because of I was at my work conference we weren't able to attend John and Christopher's open house at school, but their teachers were kind enough to send home all of the things they had been working on and we went through all of those this morning. They were very excited and had a lot of smiles as we went through their work.

Last week I was brushing John's teeth and noticed that there was a little bit of blood on the cloth by his mouth. I couldn't figure out what was wrong and then I noticed a small item on the cloth which turned out to be a tooth! We were then teasing Christopher that he needed to get around to losing some teeth and then noticed that he had already lost the same tooth that John lost! With all of the suctioning and everything he went through during the past couple of weeks, he could have swallowed it or it could have been coughed or suctioned up--who knows?? We told him he has to not swallow them so the tooth fairy can come!

Jack is doing very well with his horse riding therapy. He goes every Thursday and Bob said he sits very straight and does not have to have anyone hold him. Hopefully Bob will be able to get some pictures of him soon! Check out the View Photos tab for some new pictures of the kids!

We are hoping for warmer weather soon!

We Win in the End,

Sonya

Wednesday, February 13, 2008 10:15 PM CST

Christopher was released from the hospital last Saturday, and we are hoping that he can go to school tomorrow. He had a lot of congestion in his lungs, and it was either pneumonia or RSV. Fortunately, we caught it early enough that Christopher did not have to stay in the hospital too long. We had one night that was pretty rough where he was on a lot of oxygen and his oxygen levels were still low, but Bob was finally able to get a lot of the mucous suctioned out and Christopher made a noticeable improvement. John started exhibiting some early symptoms on Saturday, so our doctor started him on the same medications as Christopher, and so far we have been able to keep him relatively healthy and he was able to go to school today. Jack has done well and is still healthy, so we are very thankful for that. It gets a little crazy around here when we have children in the hospital, so we've gotten a bit behind, but we're all glad to be home again.

We are getting very tired of snow and winter! We're hoping that spring will come soon!

We Win in the End,

Sonya

Wednesday, February 6, 2008 10:27 AM CST

Christopher had to be admitted to the hospital yesterday because he had a lot of congestion in his lungs. It seems that everytime he gets sick it goes straight to his chest and then we have to battle pneumonia. Right now he is at Rush-Copley hospital by our house. He is on several antibiotics to make sure that we are covering anaerobic bacteria, aerobic bacteria, and other infections. He's also on oxygen and getting respiratory treatments 4 times per day.

So far, John and Jack are doing okay. They both have had stomach problems at night, but nothing debilitating.

John and Christopher were supposed to go on their first school field trip today to the Children's Museum, but that ended up not happening! We'll have to go on our own field trip when they get better!

We Win in the End,

Sonya

Wednesday, January 30, 2008 8:40 PM CST

Today Bob went and observed Jack at school, and he was amazed at how well he was doing. Jack was engaged and didn't cry and followed directions! He has two switches that they are using with him as a form of augmentive communication. When he presses the button on one switch, it says "More". When he presses the button on the other switch, it says "All Done". However, Jack is more of a purist and just swipes the "All Done" button off the table to indicate that he's finished! Jack has one-on-one interaction in his classroom, and we want to go back next week so we can steal some of their ideas!

John and Christopher are also doing well at school. They wear face masks while in class to avoid getting sick. From what the teachers tell us, they have become so popular that they have made it a class job to help John and Christopher, and only kids who behave well get to do it. Jean, our nurse, said that John has helpers booked all the way until next Monday! The teachers were telling us that they are planning on having a musical or play at the school in May, and they want John and Christopher to be able to press their audible switches (similar to what Jack has) so that they can have speaking parts. How cool is that? I'm really looking forward to seeing it.

We received some exciting news from Dr. Maria Escolar at the University of North Carolina at Chapel Hill that they are beginning an MLD natural history study. The purpose of this study is to understand what happens to the neurodevelopment of children with MLD. This research will help understand if future treatments like enzyme replacement infusions or cord blood transplantation are effective in improving or stabilizing the disease progression. Each child who participates will receive a comprehensive neurodevelopmental evaluation by a clinician who is an expert in evaluating and treating children with MLD. Additional medical treatment will also be provided at NO COST and travel expenses will be paid. This type of study is critical in order for new treatments to be approved because for a treatment to be approved it has to be proven effective, yet no one has actually documented what happens to children with MLD if they are NOT treated. For full details and contact information, please click here.

Bob and I went to the Chicago RV show last weekend and we found some great places to go camping this summer. We are looking forward to getting outside with the kids and can't wait to get out of our -5 degree weather!

We Win in the End,

Sonya

Monday, January 21, 2008 9:19 AM CST

This weekend we celebrated Jack's 4th birthday, and the phrase, "it's my birthday and I can cry if I want to" definitely seemed to be Jack's motto for the day! We invited 8 kids over and had a lady come and play music and games with the kids, but Jack was not happy about it. I think he was upset because he wasn't used to having so many kids at his house and having them play with his stuff. He calmed down after awhile, but John and Christopher had fun with all of the kids and playing the games. The Elmo pinata was a big hit (literally) with all of the kids taking turns trying to get the candy out of the pinata. We had some potential major league hitters there! Despite Jack's frustration with everything, we were very happy to celebrate his 4th birthday. He has definitely not gotten worse during the past 2 years, and this is an encouragement to us, since we know that MLD is a very aggressive disease. While we still have a long way to go with Jack, we are happy that we can celebrate his birthday and that he is continuing to improve.

Christopher had a bit of a fever yesterday morning and then had an episode of throwing up yesterday afternoon, so we have been watching him closely. We are unsure but he may have inhaled something as he threw up yesterday, so we have him on extra breathing treatments as a prevention measure.

I started a new position at work last week and moved locations. I moved back to the finance team and am now the Controller for our division, so I am trying to become familiar with my new role. I was on the finance team before, so I know a lot of the people and I think this will be a good position. I will definitely miss the people I was working with in my previous relationship manager job, though, but I feel like I will be better in my new role because of my experiences there.

Bob is speaking on a conference call tonight on the topic of newborn screening for the Acid Maltase Deficiency Association (AMDA). This group is a parent-sponsored group focused on Pompe disease and they supported our newborn screening bill in Illinois, SB1566. They promise to produce a CD of the call, so I will post it on the website once it is available.

We Win in the End,

Sonya

Sunday, January 6, 2008 1:30 PM CST

At church this morning, Jack's Sunday School buddy told us that there was a theft last night--someone stole all the snow! He's right! It's in the mid-50's today and all of our snow is gone!

The boys are doing well and John and Christopher go back to school tomorrow. They all had their appointment with Dr. Keen this week and she was pleased with the health of all of them. She is extremely pleased with Jack's progress. When she last saw him in June, Jack was at the 10th percentile for weight and not even on the charts for height. This time, though, he was at the 50th percentile for weight and the 35th percentile for height! He has really grown! She recommended that we start putting John and Christopher in the stander more to strengthen their pelvic muscles, so we will start doing that in conjunction with soaking in the hot tub.

In other big news, John lost one of his top teeth this week! He keeps putting his tongue in the spot where the tooth is missing. See the View Photos tab for a picture!

I was able to get a copy of the article from the newspaper that had a picture of Christopher and me, and I even had a quote! Click here to read the article!

Bob's sister and parents will be coming this week, so we're looking forward to seeing them soon. Bob is still working on our master bath, and we're starting to see the light at the end of the tunnel.

We have been reviewing our initiatives for The Evanosky Foundation for 2008, and we have some exciting projects that we will be working on. We'll be posting more details soon, and we're hoping that 2008 will be the year for a cure for our boys.

We Win in the End,

Sonya

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