History

Thursday, December 18, 2008 12:01 AM CST

Hi Friends!

Wow, it’s been way too long since I’ve updated. I have had a lot of problems with my g-tube, and even got a new kind of button, it’s called a Nutraport. That took forever to get, mom was having a lot of problems trying to find one, and then once I got it, we’ve had problems getting the proper supplies.

My site is finally starting to heal, although there is still leaking issues, but it’s better than it has been. My infusions are going pretty good, too, although last week I had to go to the EU because I was choking then my SATS dropped into the 80’s and my HR nearly doubled what it had been all day.

Mom took me down to the EU and we stayed there for about 4 hours. They gave me some O2 and took a chest x-ray. I finally started to feel a little better so they let me go home. On our way home from Children’s Hospital mom and I got into a car accident. Someone turned right in front of us and we collided. What a terrible day!!!! Our vehicle had to be towed and mom’s hand hurt so we had to head back to another EU. The doctor checked me over and I seemed okay, but mom’s finger is fractured. She had to see another doctor earlier this week and now she has to have surgery to fix her finger. She is having that done in just a couple of hours. Hopefully she will still be able to take care of me with her left hand.

I had to miss my ERT today because of mom’s surgery, but I will go again on Tuesday. My doctor agreed to increase my infusion rate, and we have done that the last 3 times and I have done pretty well. I had those problems last week, but my pulmonary and genetic doctors both think that those issues were not related to the infusion.

I appreciate all of you that are checking in on me. It makes me feel good to know that so many people love me and my family.

I’ll leave this link up clicking HERE. Its pictures my mom took while I was in the hospital. I wish I could have a TV like that one, I loved that thing, it was very cool!!!

Until next time,
Kraiggy

My Mom made this photo story of me for my 16th birthday, take a look, but be patient, you need to download it first so you can see the whole thing and hear the music. It’s pretty cool! View this montage created at One True Media
Happy 16th Kraig

Sunday, September 28, 2008 4:15 PM CDT

Hi Friends!

Have I told you lately how much I hate this stupid g-tube?!?!? The g-tube site is kinda gross, so I try not to look at it too much. It was slightly better, but then it started leaking again and some tissue started building up at the bottom of the button area. Mom took me to see the GI NP a couple of weeks ago. She has been pretty helpful and hopefully can get my medical supply orders straightened out. Mom spends a lot of time on the phone with either doctors, insurance, school or the medical supply company.

I have treatment on Tuesday this week instead of my regular Thursday. That’s because the nurses have some kind of meeting. My pulmonary doctor is supposed to come down and see me during treatment to talk about ordering another machine for me to use at home. The nurse from PAWS will also come and see me to check out my g-tube site. She came down on Thursday and had a worried look on her face. She even took pictures to show the surgeon, can you believe that?!?!? Why would you want a picture of something so gross looking? The PAWS nurse checked the balloon to see if there was enough fluid in there, there wasn’t, so she had to add some more so that the Mic-key button wouldn’t fall out. When I got home and after I took my bath mom and dad redressed the site. Then later that night a bunch of goo leaked out and made a huge mess. I know mom was pretty worried about it. They ended up changing out the Mic-key button because they thought the balloon had burst, it didn’t, but since they had the new Mic-key all opened up and everything they decided to change it anyway. Ever since then there has been leakage, so I’m thinking something isn’t quite right, good think I will be at the hospital again on Tuesday so the nurse can check it out.

Last Sunday my friends Mark and Alice invited me and my family out to their farm for a picnic. The weather was perfect and I enjoyed walking around the lake. We even went on a hay ride, which was fun as long you kept your eyes open for those tree branches.

Hopefully I will be able to go to school this week, all week! I really enjoy seeing my friends there, plus I get to ride my bike and I really like to do that!

I’ll leave this link up clicking HERE. Its pictures my mom took while I was in the hospital. I wish I could have a TV like that one, I loved that thing, it was very cool!!!

Until next time,
Kraiggy

My Mom made this photo story of me for my birthday, take a look, but be patient, you need to download it first so you can see the whole thing and hear the music. It’s pretty cool! View this montage created at One True Media
Happy 16th Kraig

Saturday, September 6, 2008 6:24 PM CDT

Hi Friends!

Well it’s been almost 3 weeks since I got this g-tube thing. I guess it’s going pretty good, but I would still like to eat something by mouth. When mom is not looking, I grab whatever I can and put it in my mouth. heehee I like to keep her on her toes!

I went back to school for a couple of days this week. It feels good to get back to school and see all my friends. On Tuesday mom stayed at school with me so that she could talk to my teacher, assistant and the nurse. Everyone needed to learn how to do stuff with the g-tube. I gave mom a tour of the school and introduced her to some of my friends. There were some problems with the handicap parking at the school, but I think she got that straightened out now.

ERT went okay this week, boring as usual just sitting there all day. After my infusion I had to go to the genetics clinic to see my doctor. She is going to run some blood work, but mom says it’s not a big deal, cuz they can just take blood from my port before I get my infusion. I also need to see my pulmonary and GI doctor, I think mom called to schedule those appointments. I can’t get home infusions yet, but my doctor is going to call Dr. M at UNC for suggestions on what can be changed with my treatment plan.

Mom, Dad and Chelsey have been keeping me busy at home. They take me on a bike ride almost every afternoon. I love riding my bike; it’s one of my favorite things to do. I appreciate all of you that are checking in on me. It makes me feel good to know that so many people love me and my family.

I’ll leave this link up clicking HERE. Its pictures my mom took while I was in the hospital. I wish I could have a TV like that one, I loved that thing, it was very cool!!!

Until next time,
Kraiggy

My Mom made this photo story of me for my birthday, take a look, but be patient, you need to download it first so you can see the whole thing and hear the music. It’s pretty cool! View this montage created at One True Media
Happy 16th Kraig

Thursday, August 28, 2008 9:45 PM CDT

Hi Friends!

Yawn, I’m tired. I haven’t been sleeping the best, but better than when I was in the hospital. This new feeding stuff is going okay, but I wish I could eat something. I know my family feels bad eating around me; they usually eat when I’m not looking.

Mom talked to a nutritionist the other day and they talked about trying a different formula. That got delivered today; it has more calories per can, so I don’t have to be hooked up as much. Mom said that she would try it out tomorrow; I hope it agrees with me cuz I don’t like being hooked up so much.

I had ERT today. Two weeks is when I had so much trouble during treatment and ended up being admitted to the hospital. I never did get my full dose of Elaprase that week, then last week I had to skip. Since I was in-patient I guess there is a lot of red tape involved, they couldn’t figure out the billing stuff. I don’t get that, but what can I do?!?!?!

This week marks my 2 year anniversary of starting Elaprase! It’s hard to believe I’ve been getting treatment for 2 years now. Despite the surgeries and health issues I’ve had, I still believe that Elaprase benefits me. I generally feel better when I get treatment, if I didn’t I sure wouldn’t let mom take me there every week.

I hope I can get back to school soon. I miss my teachers and friends. I know mom made some more phone calls today and worked on updating my health information. Hopefully everything falls in to place and I can get back soon.

I appreciate all of you that are checking in on me. It makes me feel good to know that so many people love me and my family.

I’ll leave this link up clicking HERE. Its pictures my mom took while I was in the hospital. I wish I could have a TV like that one, I loved that thing, it was very cool!!!

Until next time,
Kraiggy

My Mom made this photo story of me for my birthday, take a look, but be patient, you need to download it first so you can see the whole thing and hear the music. It’s pretty cool! View this montage created at One True Media
Happy 16th Kraig

Tuesday, August 26, 2008 7:21 AM CDT

Hi Friends!

It feels good to be home. I’m still having some trouble sleeping, but am resting better than I did in the hospital. Mom is trying to figure out a good feeding schedule for me. There are so many doctors that take care of me, so she is having a hard time figuring out which doctor to talk to about some issues that have come up since I’ve been home. Seems every time she calls one doctor, they tell her to call a different doctor. I guess MPS is complicated?!?!?!

I got out of the house a little bit yesterday. Mom took me to school so I could see my friends and teachers. Everyone smiled when they saw me, I was very happy to see all of them. When we got home Chels and Mom took me for a ride on the golf cart around the house. We even tried out my mini backpack; it holds all the feeding stuff. So I rode around the house and was getting my tummy full at the same time.

Once we work out some issues, I hope to be able to go back to school soon. It would be nice to get back into a routine and get out of the house a little more. I think I will go back to my regular ERT schedule this week, as much as I hate sitting there all day that usually makes my body feel better to get Elaprase.

I appreciate all of you that are checking in on me. It makes me feel good to know that so many people love me and my family.

I’ll leave this link up clicking HERE. Its pictures my mom took while I was in the hospital. I wish I could have a TV like that one, I loved that thing, it was very cool!!!

Until next time,
Kraiggy

My Mom made this photo story of me for my birthday, take a look, but be patient, you need to download it first so you can see the whole thing and hear the music. It’s pretty cool! View this montage created at One True Media
Happy 16th Kraig

Sunday, August 24, 2008 8:01 AM CDT

Hi Friends!

I’m so happy to be home. I did rest a little better last night, but still kept tossing and turning for a while. It’s kind of a pain finding a comfortable spot with this stupid tube sticking out. Mom and Dad are taking pretty good care of me; they managed to make it through night time and now morning meds and a couple of feedings. They just need to figure out a good time schedule, which will take some adjustments yet. I’m hoping I can get out of the house a little bit today. I’m tired of being all cooped up. Maybe I can talk Chels into taking me for a ride on the golf cart later.

I appreciate all of you that are checking in on me. It makes me feel good to know that so many people love me and my family.

I’ll leave this link up clicking HERE. Its pictures my mom took while I was in the hospital. I wish I could have a TV like that one, I loved that thing, it was very cool!!!

Until next time,
Kraiggy

My Mom made this photo story of me for my birthday, take a look, but be patient, you need to download it first so you can see the whole thing and hear the music. It’s pretty cool! View this montage created at One True Media
Happy 16th Kraig

Saturday, August 23, 2008 4:22 PM CDT

Hi Friends!

I’m home, I’m home, I’m home!!! Yeah I’m so happy to be back in my own home, I got to come home this afternoon. I’m so happy that I fell asleep almost immediately, as soon as I got all comfy on the couch.

I hate this stupid thing sticking out of my tummy, but as with everything else that has come up in the past, I’ll get used to it. I’m going to try very hard not to play with it and pull on it. My mom gets a little freaked out any time I touch it, I guess she doesn’t trust me. LOL Although I must admit I don’t have a good track record, I have done some pretty silly stuff before.

I have a lot of new equipment in my room. I’m not sure how I feel about that yet. This is all going to take some getting used to. Mom and Dad have both done my feeding by themselves a couple of times, and given me my meds, I guess they know what they are doing. I hope I can go back to school and see my friends this week, I miss seeing them, even for a short visit would be nice.

I’ll leave this link up clicking HERE. Its pictures my mom took while I was in the hospital. I wish I could have a TV like that one, I loved that thing, it was very cool!!!

Until next time,
Kraiggy

P.S. Thank you Leslie for fixing up my page, it looks very cool! As you know, I love John Deere tractors, I had fun that day "driving" the tractor. I love you!!!

My Mom made this photo story of me for my birthday, take a look, but be patient, you need to download it first so you can see the whole thing and hear the music. It’s pretty cool! View this montage created at One True Media
Happy 16th Kraig

Friday, August 22, 2008 8:52 AM CDT

Kraig is tolerating his continuous feed, he doesn’t seem too uncomfortable and he is not getting sick, all good signs. I am hoping that dietary comes in today to go over a game plan once we are released. I certainly don’t want Kraig to stay on a continuous feed. He would not be happy with me chasing him around all day with a pole or backpack holding the equipment (that wouldn’t make me very happy either). I had a g tube class yesterday, I got to practice stuff on a baby doll (that was fun). The class helped a lot, but I am still waiting for the NP to come in and teach the hands on Kraig stuff. I did give him his morning meds today, which was my first real hands on with the g tube.

He finally got to get up and walk around yesterday. I had wanted to do that, but just didn’t have enough support (people) to get him up and moving. I don’t have enough hands to help him, hold the tubes and push the pole. PT and OT each came by did stretching and helped get him up and walking, they should be by today, too. RT has also been by 4 times a day to give treatments, which seem to be helping him as well.

Kraig is still not sleeping great, but better than he has. At least he fell asleep around 2:30 AM versus his usual 5 AM last night. His port had to be de-accessed and re-accessed yesterday because it had been a week. I went down to the second floor and asked if one of our favorite infusion nurses could come up to the floor and do that for Kraig. We’ve had problems in the past with nurses on the floor that can’t access his port. I didn’t want to put him through any unnecessary poking. Vicky was able to come up and do that, Kraig even smiled at her. I think he was thinking “the Thursday stuff isn’t so bad compared to this”.

Since Kraig has had problems keeping his SATs up while sleeping they have order him to be on O2 at night. At home they want him on 6 liters by mouth. I really don’t see that happening all night every night, he won’t be happy with more “stuff” to deal with while trying to sleep.

I hope we go home tomorrow, I know I said that yesterday about today, but it’s not happening today. School started this week, so Chelsey has been home by herself a lot (which does not make her very happy). Brian is working and I’m here all day/night, there is not much we can do about it right now. Hopefully we’ll be home soon and back on some sort of schedule.

I have taken a few pics of Kraig, mostly out in the garden here on the 8th floor, but a few of Kraig with his TV. He loves the TV and holds on to it all the time while he is in bed, it’s pretty funny. I’ve uploaded the pics in an album which you can find here: CLICK HERE.

Until next time,
Kris reporting for Kraiggy

My Mom made this photo story of me for my birthday, take a look, but be patient, you need to download it first so you can see the whole thing and hear the music. It’s pretty cool! View this montage created at One True Media
Happy 16th Kraig

Friday, August 22, 2008 8:49 AM CDT

Kraig is tolerating his continuous feed, he doesn’t seem too uncomfortable and he is not getting sick, all good signs. I am hoping that dietary comes in today to go over a game plan once we are released. I certainly don’t want Kraig to stay on a continuous feed. He would not be happy with me chasing him around all day with a pole or backpack holding the equipment (that wouldn’t make me very happy either). I had a g tube class yesterday, I got to practice stuff on a baby doll (that was fun). The class helped a lot, but I am still waiting for the NP to come in and teach the hands on Kraig stuff. I did give him his morning meds today, which was my first real hands on with the g tube.

He finally got to get up and walk around yesterday. I had wanted to do that, but just didn’t have enough support (people) to get him up and moving. I don’t have enough hands to help him, hold the tubes and push the pole. PT and OT each came by did stretching and helped get him up and walking, they should be by today, too. RT has also been by 4 times a day to give treatments, which seem to be helping him as well.

Kraig is still not sleeping great, but better than he has. At least he fell asleep around 2:30 AM versus his usual 5 AM last night. His port had to be de-accessed and re-accessed yesterday because it had been a week. I went down to the second floor and asked if one of our favorite infusion nurses could come up to the floor and do that for Kraig. We’ve had problems in the past with nurses on the floor that can’t access his port. I didn’t want to put him through any unnecessary poking. Vicky was able to come up and do that, Kraig even smiled at her. I think he was thinking “the Thursday stuff isn’t so bad compared to this”.

Since Kraig has had problems keeping his SATs up while sleeping they have order him to be on O2 at night. At home they want him on 6 liters by mouth. I really don’t see that happening all night every night, he won’t be happy with more “stuff” to deal with while trying to sleep.

I hope we go home tomorrow, I know I said that yesterday about today, but it’s not happening today. School started this week, so Chelsey has been home by herself a lot (which does not make her very happy). Brian is working and I’m here all day/night, there is not much we can do about it right now. Hopefully we’ll be home soon and back on some sort of schedule.

I have taken a few pics of Kraig, mostly out in the garden here on the 8th floor, but a few of Kraig with his TV. He loves the TV and holds on to it all the time while he is in bed, it’s pretty funny. I’ve uploaded the pics in an album which you can find by clicking HERE.

Until next time,
Kris reporting for Kraiggy

My Mom made this photo story of me for my birthday, take a look, but be patient, you need to download it first so you can see the whole thing and hear the music. It’s pretty cool! View this montage created at One True Media
Happy 16th Kraig

Thursday, August 21, 2008 7:42 AM CDT

Kraig finally got some nutrition yesterday afternoon. We are starting off with a continuous feed at a very slow rate, 20 ml/hr. He seems to be tolerating that fine, so I expect them to increase the rate some time today. He has not been allowed anything by mouth since he has been in here, because of that he has missed some of his normal medications, Miralax being one of them. Miralax is very important in helping to keep Kraig “regular”; it’s now been several days since he has had a BM, so that is becoming an issue. He had trouble keeping is SATs up last night, so they started him on some O2 and ordered a chest x-ray since he sounded pretty junkie. The x-ray was at 1 AM, I fell asleep after that, so I am still waiting to hear the results of that.

I am supposed to go down for a class later this morning on the g-tube. Hopefully we can arrange for other family members to take this same class at some point very soon. The NP was supposed to be up to our room yesterday to go over some care and feeding instructions, but that didn’t happen, so I would expect to see her some time today. I’m sure we will see Pulmonary at some point today since he had trouble with his SATs last night. BJC also delivered some equipment to our room yesterday for home use, O2 and portable suction. They will also be delivering a feeding pump and supplies once we get home.

ERT will not happen today, which is what I figured. This is normally done on an outpatient basis and I guess the billing is complicated to figure out if you are in-patient. It doesn’t really make a lot of sense to me; this red tape is quite frustrating. It’s not the worst thing to miss a week, but he did not get his full dose last week so hopefully it will only be this one week and not be a problem next week.

We hope to be able to go home tomorrow, but it may be some time this weekend. Thanks for checking in on Kraiggy!!!

Until next time,
Kris reporting for Kraiggy

p.s. They doc just came in and said his chest x-ray was fine (whew). His lungs sound much better now that he fell asleep and is on his side versus his back.

My Mom made this photo story of me for my birthday, take a look, but be patient, you need to download it first so you can see the whole thing and hear the music. It’s pretty cool! View this montage created at One True Media
Happy 16th Kraig

Thursday, August 21, 2008 7:38 AM CDT

Kraig finally got some nutrition yesterday afternoon. We are starting off with a continuous feed at a very slow rate, 20 ml/hr. He seems to be tolerating that fine, so I expect them to increase the rate some time today. He has not been allowed anything by mouth since he has been in here, because of that he has missed some of his normal medications, Miralax being one of them. Miralax is very important in helping to keep Kraig “regular”; it’s not been several days since he has had a BM, so that is becoming an issue. He had trouble keeping is SATs up last night, so they started him on some O2 and ordered a chest x-ray since he sounded pretty junkie. The x-ray was at 1 AM, I fell asleep after that, so I am still waiting to hear the results of that.

I am supposed to go down for a class later this morning on the g-tube. Hopefully we can arrange for other family members to take this same class at some point very soon. The NP was supposed to be up to our room yesterday to go over some care and feeding instructions, but that didn’t happen, so I would expect to see her some time today. I’m sure we will see Pulmonary at some point today since he had trouble with his SATs last night. BJC also delivered some equipment to our room yesterday for home use, O2 and portable suction. They will also be delivering a feeding pump and supplies once we get home.

ERT will not happen today, which is what I figured. This is normally done on an outpatient basis and I guess the billing is complicated to figure out if you are in-patient. It doesn’t really make a lot of sense to me; this red tape is quite frustrating. It’s not the worst thing to miss a week, but he did not get his full dose last week so hopefully it will only be this one week and not be a problem next week.

We hope to be able to go home tomorrow, but it may be some time this weekend. Thanks for checking in on Kraiggy!!!

Until next time,
Kris reporting for Kraiggy

p.s. They doc just came in and said his chest x-ray was fine (whew). His lungs sound much better now that he fell asleep and is on his side versus his back.

Mommy made this photo story of me for my birthday, take a look, but be patient, you need to download it first so you can see the whole thing and hear the music. It’s pretty cool! View this montage created at One True Media
Happy 16th Kraig

Wednesday, August 20, 2008 9:09 AM CDT

I guess I better update the Journal for Kraiggy since he is not feeling up to doing it himself. LOL

As you may or may not know, Kraig had some severe breathing issues during his weekly ERT (enzyme replacement therapy) last Thursday, August 14th. We think these issues are related to swallowing, not the treatment itself. He was eating at the time when his lips started to turn blue, so the O2 monitor was hooked up which showed his SATs in the 80’s. The infusion was paused, O2 was administered and Genetics was paged. After about 45 mins. his SATs came up, so the O2 was removed and the infusion resumed. That lasted a very short time before his SATs started to drop once again. The infusion was then ended and Pulmonary was called for a consult. It was agreed that he most likely was aspirating on his food and liquid, so he was sent down for a chest x-ray. We had to wait a little bit so they could bring up some portable O2. Once we got that we headed down. Kraig was already scheduled to have an upper GI and consult with a general surgeon the next day. We had been contemplating placing a G-tube (permanent feeding tube), and wanted to talk to the surgeon to get more details before we made a decision. Because Kraig was having trouble keeping his SATs up and it seemed evident that his swallowing was worsening, Genetics wanted us down in the ER so that we could be admitted overnight for observation. Apparently they couldn’t just admit us from the Infusion Center this time.

So off we went to the ER with an escort from Genetics. We waited and waited and waited for what seemed like an eternity before they finally decided to take us up to the floor. Kraig’s night wasn’t too bad, so when his Ped. Came in Friday morning he said that he would be discharged so that we could do the upper GI and Surgery consult as an outpatient. In the meantime, Kraig fell asleep again and started dropping his SATs. Since that happened, we could not be discharged. They also would not give Kraig anything to eat by mouth this entire time for fear he would choke and aspirate. Several other docs came and trying to decide what should be done. They ended up coordinating a swallow study and upper GI at the some time, so we went down for that, then headed over to the Surgery office for our already scheduled appt. The swallow study and upper GI showed that Kraig is aspirating everything, even thickened liquids. He also had problems chewing his foods properly and tends to swallow huge chunks instead of chewing them. His problems were determined to be pretty severe, so the surgeon wanted to get the G-tube placed ASAP. They scheduled the surgery for Monday and arranged for the ENT to be in for airway assistance and to place new T-tubes in both ears. Kraig had an office consult with his ENT just a few days prior. The ENT pulled out a lot of wax from his left ear and said he wanted to put new T-tubes in if we went ahead with the G-tube placement, we just didn’t know it was all going to happen as fast as it did.

In the mean time, Kraig would remain hospitalized and they would place an NG tube (tube shoved down the nose and into the tummy, not pleasant). He had not had any thing to eat for 30 hours, so they finally placed the NG tube and began feeding him. I could not watch them place that thing; it was awful, very had on him. They did get it in and once the feedings started he did start to perk up. He ended up pulling the tube out over the weekend and it had to be reinserted. He was scheduled to be NPO (nothing by mouth) after 3 AM on Monday morning in preparation for his surgery. Well, he pulled the tube out again before his last midnight feeding. Instead of reinserting it, it was decided to increase his IV fluids since we thought his surgery was going to be early on Monday. Trying to coordinate 2 surgeons schedules gets complicated, especially on a last minute basis. He did not end up going down for surgery until 2:30 PM. The surgery lasted about 90 mins. Thankfully his airway was not a major issue, so that was a huge relief.

He was taken back to his room by 5 PM that evening. His G-tube started draining quite a bit though the night, which apparently it is not supposed to do. The nurses exchanged the very small drain tube (40 cc’s) with a larger foley bag. It wasn’t long before the bag started filling up with drainage, which concerned everyone. Once surgery came in Tuesday morning, they gave instructions to change to a different type of GI pressure bag. Once that happened his G-tube stopped the massive drainage. Because of the excessive drainage surgery did not want them to use his G-tube, so as of right now it’s been 2 and a half days since Kraig has been fed. He is getting IV fluids, but I’m sure the poor guy is hungry.

Surgery was in this morning and said they want to consult with Kraig’s surgeon, but they thought all looked good and could start using the G-tube today. Hopefully that happens soon. He has had problems sleeping the past few nights, but is actually snoring at the moment. He has not had all his normal meds because of the drainage issues and the fact they don’t want him to take anything by mouth right now. Once the tube is used and functioning like it is supposed to he will get all of his normal meds.

The big debate right now is his weekly ERT and if he will be able to get that as an in-patient. Genetics does not want him to miss treatment, but the red tape involved with his treatment is quite a pain. Hopefully that all gets sorted out and he can get treatment this week.

I’m not sure how much longer he will be in here. I hope we are home by the weekend. Thanks for checking in on Kraiggy!!!

Until next time,
Kris reporting for Kraiggy

Mommy made this photo story of me for my birthday, take a look, but be patient, you need to download it first so you can see the whole thing and hear the music. It’s pretty cool! View this montage created at One True Media
Happy 16th Kraig

Sunday, April 6, 2008 11:54 PM CDT

Do you know what the date is? Today is 04-06-08. Cool date, huh? Today was also the day that we held our annual bowl-a-thon for the National MPS Society. I always have a lot of fun bowling, and it’s always cool to see so many friends at the bowl-a-thon.

My mom is still counting the money from Klenke Bowl 2008, it looks like we raised at least $8,000! Thank you to all who helped make the event a success! www.bowl4kraig.com

A newspaper reporter came out today to do a story on the fund-raiser and so did CW 11 news, I was on TV tonight!! Check this out CW 11 news in St. Louis

It means so much to me and my family to have everyone take time out of their day to come and support the National MPS Society. It was a pretty nice day outside and I’m sure there were plenty of other fun things to do today, but so many chose to come to the bowling alley…….THANK YOU!!!!

I’m hoping I can go to bed here pretty soon. I have to have an EEG tomorrow and I’m only allowed to sleep 4 hours, so my mom is making me stay up. *yawn*

Until next time,
Kraig

To see pictures from Washington DC click HERE and HERE

Friday, February 29, 2008 11:56 PM CST

I really need to update my journal.

Sunday, December 9, 2007 7:54 AM CST

I don’t feel good! It all started last week on Saturday. Mom, Dad and Chels took me out to eat for my birthday, and while eating I just started to feel bad. I got all fidgety and flushed. We got home and I was able to sleep that night and actually started to feel a little better by Sunday afternoon. I didn’t feel too bad on Monday, which was my birthday, so I was happy about that. However, by Tuesday afternoon I started to feel bad again. I just couldn’t sleep; I kept getting up pacing the floors. I know my family is worried about me.

I went to school on Wednesday, but then I started crying so Mom came and picked me up early. Mom and Dad did take me to treatment on Thursday, but once again I started feeling really really bad so we had to stop treatment. I felt so bad that I started thrashing around and several nurses, doctors and Mom and Dad had to hold me down so they could get the needle out of my chest. I was able to calm down enough to go home, but after I was home for a while it all started again. Mom called my doctor and then she game me some medicine to help me relax a little. I was able to sleep, finally, but only for a short time before it all started again.

On Friday morning, Mom called my doctor once again who told her to bring me in to the hospital. I’ve been here since then and still do not feel well. They have ran a whole lotta tests, but still can’t figure out why I am feeling so lousy. They think I may have passed a kidney stone, but there is still something wrong cuz I still don’t feel well.

Please pray that I start feeling better and can go home soon! Don’t forget to sign my guestbook, I love hearing from all my friends.

Until next time,
Kraig

Mommy made this photo story of me for my birthday, take a look, but be patient, you need to download it first so you can see the whole thing and hear the music. It’s pretty cool! View this montage created at One True Media
Happy 16th Kraig

Monday, December 3, 2007 11:20 AM CST

Happy 16th Kraiggy!

We love you buddy and hope you have a wonderful day! We created this special photo story for you, hope you enjoy!
View this montage created at One True Media
Happy 16th Kraig

Please sign Kraig's guest book today and wish him a Happy Birthday!

Love,
Mom, Dad and Chels

Wednesday, November 14, 2007 8:25 AM CST

Has it been long enough since I’ve posted an update?!?!?!?

I’ve been enjoying High School; I even went to the Homecoming football game last month with my class. Too bad that we lost the game though. I’ve had some issues with treatment once again. Mom asked my doctor if we could try to increase my infusion rate since I had been doing pretty well for a couple of months, so the doctor agreed. We were only going to go up my 4 mls/hr, not very much, but still it would be a little faster. Apparently my body does not like the faster rate, so I remain a member of the “Slow Flow Club” for a while longer. I had a pretty scary reaction that day, my BP decreased quite a bit and my HR increased. The nurse stopped the infusion and my doctor had to come in to see me. They ran a bolus of saline and my BP rebounded to a more normal range, so that is good. Since then, we’ve been able to get my infusion rate back to my normal slow without any major reactions.

I’ve been getting pretty antsy during the last half of my treatment. It is so hard to just sit there all day long; I get so tired of it. The hospital changed their policy on mixing the drug, which basically means it’s going to take longer to get my medicine up to my room…….more time spent each week in the hospital, just what I want……NOT!

I got a new machine to take up space in my room. It’s not too bad, at least it doesn’t make all that much noise, it just measures my O2 levels and other stuff while I sleep. I’ve been getting really tired during the day and falling asleep; sometimes I fall asleep in weird positions, which worries my mom a bit. She has been busy talking to several of my doctors trying to figure out what to do.

Leslie is coming to visit me again. She is coming right after Christmas and will be here for a couple of weeks, YIPEE!!!

Until next time,
Kraig

Klenke Bowl 2007 raised just over $10,000! Thank you to all who helped make the event a success! www.bowl4kraig.com

To see pictures from Washington DC click HERE and HERE

Monday, August 20, 2007 8:14 AM CDT

Oh my, it’s been over 2 months since I’ve updated in my Journal. Where has the summer gone?!?!?!?

We’ve been so busy the last few months. I’ve been to Chapel Hill to see doctors and visit with my friends Andrew, Patrick, Sharon and Leslie. We had a great time there and even got to go to the beach one day. Right after that we went to Branson and spent a couple of days there before Chels and I went to Camp Barnabas. I love camp and had a blast there again this year. It was really fun to have Chelsey there this year. I got a brand new cabin, it had A/C and a bathroom right in the cabin, and it was very nice.

A couple of days after we got home from camp, Leslie came to visit us. She was here for almost 6 weeks, so we did a lot of fun stuff while she was here. Helen also came to visit for a couple of weeks. It was fun having company and now I am sad that Helen and Leslie are back to their homes, I miss them!!!!

My treatments have been going pretty good. I still have had reactions, but fortunately nothing too severe. The last 2 weeks I’ve had problems with my left eye during treatment. It must be some sort of reaction since it’s happened twice now. My left eye gets red, slightly swollen and very irritated, it waters a lot, and then eventually it stops. We also quit using tegaderm and a regular band aid. My skin gets very red and irritated if they put that stuff on my skin, now we are using cloth like tape and that helps. A few weeks ago, mom asked my doctor if we could try to increase the rate of my infusion. The doctor agreed, so now I top out at 28 mls/hour, this makes it a little quicker; it shaves off about 15 minutes of the infusion time. I have also started taking Claritin the morning of my infusion.

I had a couple of appointments with my orthopaedic surgeon and my ENT this summer. I was measured for a stander and am waiting on that and I also got new AFO’s (leg braces), but I hate wearing them. I’ll have to see the ENT in a couple of months again. He took the left t-tube out of my ear because it was just sitting in the canal and he cleaned some wax out. I did have an ear infection a few weeks ago, too (left ear).

School starts tomorrow, already! I can’t believe it, the summer just flew by. Mom met with the school district a couple of weeks ago and decided to move me to the high school. Chelsey and I will be in the same school, this has never happened before; it will be nice to be in the same building for a change, now I can keep an eye on Chels! I know my new teacher, he has taught me in summer school for the last 2 years and I know him from the Y summer camp, too. He has worked there for a long time. I’m excited for a new school year!

Until next time,
Kraig

Klenke Bowl 2007 raised just over $10,000! Thank you to all who helped make the event a success! www.bowl4kraig.com

To see pictures from Washington DC click HERE and HERE

Sunday, June 10, 2007 5:39 PM CDT

I’m so glad last week is over with. It was a long week with lots of medical tests and appointments. The week started off not too bad, I got to start back at summer day camp. It was a lot of fun and I look forward to attending again later this summer.

I fell down at camp on Monday and now the doctor thinks I have a “minor” fracture (left leg). He says I should still try to walk on it because there is really nothing he can do. I got my new AFO’s on Friday and he says that will help brace my leg. If it does not get any better in 7-10 days then I should go in and see him otherwise I don’t have to see the surgeon again for 6 weeks. I have to continue with PT 2 times per week. I don’t really like having to wear those AFO’s; however, they do seem to help me walk better. I am able to get my heels on the ground; I haven’t been able to do that in a long time.

I also had a sleep study this past week. I hate those silly tests. I did okay with all those wires and belts and stuff, but I didn’t sleep much. I only slept for about 1 ½ hours, so they probably don’t have much information from that test. I hope I don’t have to repeat that any time soon, I guess we will wait and see what the doctor says.

I did my treatment on Friday, and it went okay. It was very busy in the Infusion Center and I was very tired since I didn’t sleep much the night before. It was also very noisy in there, so I didn’t get to rest too much during treatment. I pulled on my tubing a little bit trying to get comfy and it started to leak, but the nurse got it fixed up pretty quickly. Then the stupid pump kept alarming, it would say “air in line”. That’s not uncommon, but that usually doesn’t happen until towards the end of the infusion. There was something wrong with the pump and it had to be changed out for a new pump.

I’ve had these bumps on my face and in my hair, so mom called the Dermatologist on Friday. She had an opening later that afternoon, so that worked out well. She prescribed 2 topical lotions/creams and it is already looking better.

I have PT again this week, then treatment early (on Tuesday) and then mom, Chels and I leave on Wednesday for North Carolina. I have an appointment with Dr. Escolar’s team and with Dr. Muenzer. We are also attending an MPS meeting this weekend. I’m excited to see my friends Andrew and Patrick, we always have fun when we are together.

Until next time,
Kraig

Klenke Bowl 2007 raised just over $10,000! Thank you to all who helped make the event a success! www.bowl4kraig.com

To see pictures from Washington DC click HERE and HERE

Saturday, June 2, 2007 9:20 AM CDT

I’ve been busy again and haven’t updated in a few weeks. I’m still not able to walk, although I really want to. I can ride my bike and once I get on, I do not want to get off, I love riding. My mom is getting mad at me because I want to walk so badly that I have tried to do myself a couple of times. I’ve been able to take a few steps, but then I fall down. Sometimes she is quick enough to catch me, but a couple of times I’ve fallen down. The last time really hurt. I just hate sitting down all the time, I want to get up and move around like I used to. I hope my legs are strong enough for that soon.

The next few weeks are going to be super busy. The school year ended a couple of days ago, so on Monday I start going to summer camp at the YMCA. I am really looking forward to seeing all of my friends there. I have two sessions of PT, a sleep study, ERT and an appointment with the orthopaedic surgeon. That’s a lot to fit into one week, but I know my mom will work it all out.

The following week Chels, mom and I are flying to North Carolina. I have appointments with Dr. Escolar and Dr. Muenzer. I get to see my friends Patrick and Andrew! They are also coming that same week, so we will be hanging out together.

Then in a few weeks Chels and I are going to Camp Barnabas. I’ve been going there for several years and always enjoy my week there. I really hope I can walk on my own by the time camp rolls around. Chelsey and I would love it if you would write to us while we are at camp. Just click the link above and use the camp address listed (Purdy, MO).

My treatment has been going okay. I usually get some type of reaction almost every week, nothing real major, but it still bugs me. I get pretty bored there because it takes so long. However, after missing several weeks while I was in the hospital (missing treatments because I was hospitalized, kind of ironic huh?), once I got treatment again I felt so much better. So that long day every week is worth it.

I guess that’s about it for now.

Until next time,
Kraig

Klenke Bowl 2007 raised just over $10,000! Thank you to all who helped make the event a success! www.bowl4kraig.com

To see pictures from Washington DC click HERE and HERE

Monday, May 14, 2007 8:33 AM CDT

Well my casts are off!! I am VERY happy about that. I got the casts off on Friday, May 4th. I had to get molds made for new AFO’s (leg braces) though. I still have my Ultra-Flex braces that I am supposed to wear each day for a few hours. The braces stretch my feet and are supposed to put them in a better position. I do not like the braces; it hurts to have my feet constantly stretched.

I’ve been getting PT twice a week with a private therapist and then I get PT at school, too. It really hurts to get stretched, my feet and legs feel funny and I have a hard time resting because of the pain. One night last week Dad and I sat in the hot tub at midnight because I just couldn’t sleep.

I had several appointments last week in addition to PT. I saw my neurologist on Wednesday morning and then I had ERT and a dental appointment on Thursday. Mom, Chels and I went to treatment an hour early hoping that we would get done in time for my 2 PM dental appointment. However, there were problems with my port right away. Vicky got my port accessed but it didn’t want to work right, I had a clot. That meant that she had to call my doctor and get some TPA (clot buster) ordered. That arrived about 45 minutes later and then had to be injected and sit in there for an hour. After an hour my port still did not work right so Vicky had to start an IV in my arm. OUCH!!!!! That hurts to be poke so many times. I kept beeping because the IV was right in the bend of my arm, so then they had to put this stupid board on my arm to keep me from bending it so much. Since we got started later with my infusion there was no way I was going to be done in time for the dental appointment so Vicky had to go downstairs with me. Dr. Don was speedy, he was worried my IV was going to infiltrate so he was hurrying as fast as he could. By the time we got back upstairs to the Infusion Center I had to go back in the treatment room to get my port accessed again (the needle came out in the morning when they were trying to get my port to draw). It had to be accessed to get that TPA out. Vicky got it accessed, but it still did not want to draw. I had to put my arm above my head, sit up, and lay down……geeze I thought they were going to ask me to stand on my head to get that stuff out. It did finally come out, but my port is still acting a little funny. I sure hope it works correctly this week; I don’t want to go through all of that again. My rate still remains slow on the infusion, I can’t go above 24 ml/hr or else I get a reaction. Even at 24 I still get a red face usually.

On Friday I got to go swimming with my class. I was so happy to get into the water. It’s been a couple of months since I got to swim. The water feels so good!

It will be another busy week for me. PT, ERT and swimming again on Friday. I hope you all have a great week!

Until next time,
Kraig

Klenke Bowl 2007 raised just over $10,000! Thank you to all who helped make the event a success! www.bowl4kraig.com

To see pictures from Washington DC click HERE and HERE

Tuesday, May 1, 2007 1:26 PM CDT

Hello Family and Friends,

My recovery is going fairly well. I am definately much better than I was a few weeks ago. I got my appetite back and am slowly gaining back all that weight I lost.

I had another infusion on Thursday. I felt a little funny during treatment. My face remained flush most of the infusion and the nurse did not bump up the rate to 32 ml/hr this week. We stayed at 24 ml/hr, we were afraid of a more serious reaction if we went any faster.

Having all those weeks off of treatment, I can say that I do feel much better with treatment. I guess all the time spent getting poked and sitting at the hospital is worth it.

I have a lot of appointments coming up. I have treatment again this Thursday and then on Friday I see the Orthopaedic Surgeon. I should be getting my casts off. I sure hope so. I HATE these stupid things. I sure hope I don't have to get another set of casts on. My toes are starting to peel now and one of them is pretty raw looking. I can walk pretty good with my casts as long as I have someone helping me, but when I don't put the cast shoes on my toes drag on the carpet and then they get sore. I hope this was all worth it, but it looks like I may still be up on my toes a bit even with the casts off. I think I will have to get new AFO's and will have to have more PT. I am doing pretty good with my home PT, she is pretty nice and does help me stretch those muscles.

Mom has scheduled an appt. for me to see Dr. Escolar and her team as well as Dr. Muenzer in June. She is working on the travel details now. I hope we can fly, it's such a long drive to get down there, flying would be much better for me.

I'll check again later this week after I see the surgeon. Have a great week everyone!

Love,
Kraig

Friday, April 20, 2007 11:10 AM CDT

So much has happened in the last week. I was released from the hospital…………..YEAH!!!! That made me very happy. Mom was getting worried because I did not start eating again after the TPN was stopped so I had to be hooked back up to fluids and then my O2 sats started to drop so I needed a little oxygen. However, after a little more sleep I bounced back and am now eating again.

I’ve still had trouble sleeping this past week, but it’s getting a little better for me. I’ve started taking some steps and bearing more weight on my own. It feels pretty good to stand upright. I can’t wait to get these stupid casts off though! Two more weeks then they come off.

I had my first treatment (ERT) yesterday, since my surgery in March. Mom was a little worried how it would go, but it wasn’t too bad. I got weighed yesterday, the first time since before surgery. I thought I had only lost about 10 lbs, but it is more like 20 lbs. Hopefully I can gain that weight back fairly quickly. I did react during treatment when my rate was ramped up to 32 ml/hr. The nurse paused the infusion and called the doc. Almost immediately after pausing the hives started to fade and then disappeared after a couple of minutes. The doctor wanted me to go back down to 24 ml/hr for the remainder of the infusion. I still got hives a couple of times at that rate, but they were mild and did not last very long. When I had just 7 mls left in the flush I reacted again so we just stopped the infusion for the day. I didn’t mind that as I had already sat there for 7 hours.

I got to see Miss Dani yesterday. That was exciting. She is so cute and has really grown since the last time I saw her. She has had to spend a lot of time at the hospital over the last couple of months. Check out her journal by clicking HERE.

Have a good weekend everyone!

Until next time,
Kraig

Klenke Bowl 2007 raised just over $10,000! Thank you to all who helped make the event a success! www.bowl4kraig.com

To see pictures from Washington DC click HERE and HERE

Thursday, April 12, 2007 8:11 PM CDT

April 11, 2007
7:35 AM
shhhhhhhhhhhhh............Kraig is quiet and sort of sleeping. Not in a very comfy position, but he is resting better than he has in bed for a while. He had another rough night. He was up and moving from 11 PM-3 AM. The doctor woke me up asking if they could give him Ativan, in my haze I asked a few questions and agreed to let them try. I fell back asleep only to find out they gave him benedryl instead. I need to find out why that happened. He needs rest so badly. The Ortho Resident was in this morning to check on Kraig and he said "hang in there". I'd love to put casts on his feet and see how he feels, then come by once a day for a few seconds and tell him to hang in there. I'm hoping Kraig will eat for me today, he has lost so much weight over the last 2 weeks. I would LOVE to go home today, I haven't been home since Friday, but I'm not sure that will happen. They usually only have staffing for a night sitter. I just want to go home and check mail, do laundry and get a few things from home.

April 11, 2007
4:03 PM
It's been a busy day today............but that's good, it makes the time go by faster. Kraig seems to be doing better, although he did not sleep the best last night. He did, however, fall asleep around 3ish and slept to about 10, so a good 7 hours. Now we just need to get him on a better time schedule. He ate a little lunch for me, not a lot but more than he has for the last week and a half. Treatment will not happen tomorrow, he's just not well enough and wont be released in time to get to the Infusion Center, plus he needs his Dex tonight if he has treatment tomorrow. I hate to miss again, but I also don't want to chance a serious reaction because he is not well enough. We hope we will be released on Friday. He did better with PT today, he stood for much longer and even tried to take a little step forward. We are waiting for Trisha to come up and visit for a bit.

April 12, 2007
7:38 AM
Kraig finally slept last night, the first time in weeks. I think the new Roho mattress they brought in is making him more comfy. There was a sitter in here last night to watch him, which is nice, but feels weird sleeping with someone else in here watching. I got some sleep but was up multiple times because of Kraig's movement or beeping alarms.

I did get to go home yesterday for about an hour and a half. Enough time to do a quick wash cycle and dry my clothes. We are hoping that Kraig will get out of here tomorrow. He needs to start eating and drinking on his own first.

We have to keep his casts wrapped up because Kraig swings those feet every where and he is banging up his knees with the rough casts.

April 12, 2007
3:29 PM
Well, I don't know what to say about today. He did sleep last night, which was a huge blessing. He then woke up around 7ish and fell back asleep around 9ish till noon. Now is is just kind of in a daze and still not wanting to eat or drink. They stopped the TPN while he was sleeping earlier today, anticipating that he'd eat by mouth. The fluids have now been restarted and then his O2 sats were dropping so we had to put him on oxygen. He needs to cough and get that junk out. I'd love to get out of this joint tomorrow, but I don't know now if that will happen.

Until next time,
Kraig

Klenke Bowl 2007 raised just over $10,000! Thank you to all who helped make the event a success! www.bowl4kraig.com

To see pictures from Washington DC click HERE and HERE

Tuesday, April 10, 2007 6:11 PM CDT

April 10, 2007
7:54 AM
Kraig is still not able to rest very well. He has hardly slept again for the past several days. He is not thrashing hard like he was early last week, but he moves constantly and just can not get comfortable. They still have not started the TPN, but I just talked to one of his doctors and it sounds like maybe later today they will start if he does not eat breakfast. I just want to get him stronger so we can bust out of here. I'm also very concerned about his lack of ERT. He has now missed 2 weeks and if he is not strong enough by Thursday he will miss this week as well. They will not allow in-patient infusions, apparently not uncommon for most hospitals according to Shire. I know there are a lucky few whose children have been able to get it as an in-patient, but they will not allow it here.

April 10, 2007
10:16 AM
I forgot to mention my midnight heart stopping scare last night. I was trying to doze off and get some rest. I can not watch Kraig while he is trying to sleep, as he moves constantly and gets so close to those side rails it scares me. Anyway, as I was starting to drift off into dream land I hear this very loud crashing noise. I flew up as my heart skipped a few beats thinking that noise was Kraig landing on the floor. Nicole was standing there saying "it's okay, it wasn't Kraig", it was however his IV pole. It bit the dust. It took me a while to calm down after that incident.

Kraig's Pedi was in this morning and said he is not sure when we will get to go home. Obviously he has to be stronger and he needs to eat and drink. The question about ERT (or lack thereof) came up. I don't know if we can make it happen, but he talked about trying to get Kraig a day pass so that we can go to the Infusion Center on Thursday. If Kraig is well enough, I hope we can make this happen. I hate to see him miss yet another treatment.

April 10, 2007
6:07 PM
The food cart is stuck in the elevator!!!

Kraig and I took a walk about 40 minutes ago, we were on 2 standing on the walk across watching the cars when all of the sudden 3 fire trucks pull up with their lights on. We were watching trying to figure out what was going on. I just found out that a food service worker was trapped in the elevator with the food. She was in there for over an hour and she had to be pulled out from the top. They still can't get the elevator to open and the food cart is stuck in there. I just talked to the food service worker, she still looks a little shaken.

Anyway...............Kraig is now getting TPN. They started it a little over an hour ago. He is so tired. The poor guy barely slept again today. I really hope he gets some shut eye tonight. He did eat some ice chips for me and a little bit of yogurt for lunch. I'm hoping I can get something into him for supper............that is if the food cart ever arrives.

He is getting another new mattress, but it may not arrive until tomorrow. They ordered him a Roho, which is supposed to be better than the egg crate he currently has.

Until next time,
Kraig

Klenke Bowl 2007 raised just over $10,000! Thank you to all who helped make the event a success! www.bowl4kraig.com

To see pictures from Washington DC click HERE and HERE

Monday, April 9, 2007 4:48 PM CDT

Some of this may be repeated, but I’m just going to copy and paste forum entries from the past several days.

Saturday, March 31, 2007 9:34 AM
Well we are back home for now. Kraig was still running a temp when we left, but they think he picked up something viral at the germ factory since we've been there so much lately. They did do blood cultures and will let us know if something shows up from them. The nurse in the ER could not access his port so she tried to start a periphial IV and was also unsuccessful as Kraig has very valvular veins. She did however get blood and his white counts were fine. Jakub, the ortho resident who was in on Kraig surgery came down to take a look and they had thought about cutting windows into his casts to take a look at those incisions to see if they could be infected, but they decided against that. He was starting to get dehydrated and they think his fever is from something viral, not only from being in the germ factory but all the stress his body has been under the last week.

We have to go to the infusion center on Monday and have our regular nurses try to access his port (they are not there over the weekend). They took x-rays and his line is not kinked, which is good, but they can not tell from the x-ray if the port flipped. I think it has, it just feels weird to me. I kept telling them this from the get go and they all thought it was fine and that I was probably feeling a hematoma which might have resulted from multiple attempts to access him in surgery on Monday. I watched Melissa from surgery access him prior to surgery and I was not real happy with the way she was doing it. For one thing, I realized after we were finally done that no one had a mask on and I had to tell her several times that he needed a 3/4" needle, she was insistant that it should be a 1". Anyway, she did not do it like our wonderful infusion nurses.

I think the port has flipped and I feel like shit because I think this happened when I was trying to transfer him. He is small for his age, but a big boy for me to handle. Brian is able to scoop him up and transfer him, but I can not do that by myself. I think when I picked him up under his arms that I did this.

The plan is to have the Infusion nurses try to access on Monday and give their assessment. More than likely the port will have to be fixed, which they plan to do on Thursday when he goes to the OR for a cast change.

I think this will complicate his recover and transfers even more. I don't know how I am going to move him then.

Sunday, April 1, 2007 7:57 PM
Thanks for checking in on Kraig. He is still not doing that great. He is very uncomfortable, even with round the colcok pain meds and valium. He is scheduled for treatment tomorrow, but he wont be able to have it as he still has a low grade fever. We will still have to go in to the Infusion Center to try to access his port and determine what is wrong with it. I just wish he could rest and get comfortable, he is constantly moving and not sleeping very much at all.

Monday, April 2, 2007 1:43 AM
Kraig is not doing well at all ..............this is horrible and much much worse than I ever thought it would be. He barely eats or drinks and still has a fever. He will not stop moving, only for a few seconds at a time. He will doze off then start moving constantly. When we take him out of his chair he does circles around the mattress and rolls off on to the floor. I can't take much more of this and I don't know how Kraig can deal with this for 6+ weeks. I want those stupid casts off and just forget this whole thing.

We thought he was going to go to sleep around 9ish..........yeah right, he slept for maybe an hour and since then it's this constant movement.

Monday, April 2, 2007 5:34 AM
He is still awake..................how long can one person stay awake?!?!?!?!?!

Monday, April 2, 2007 1:59 PM……..Leslie writes
I talked to Kris about 2 hours ago...they were running more blood tests and did some more x-rays. He was doing the same stuff he has been doing, so at least the doctors and everyone get to see how he has been acting. She said he slept for about a total of an hour and a half last night.

Monday, April 2, 2007 4:07 PM
I just talked to Kris and they are keeping Kraig overnight. His white counts were elevated this time and he still has a fever. They cut windows in the casts to check the incisions...they were all fine, which is good. They were able to access his port so if it did flip, they think it might have flipped BACK from his thrashing and everything. They are giving him IV fluids right now since he won't eat or drink much of anything. As annoying as a hospital stay is, it is a good thing they are there (overnight) since he has had so many problems. It was supposed to be infusion day, but obviously that didn't happen either.

Monday, April 2, 2007 9:40 PM
Kris and I just talked again and she sounds so tired! Kris, Brian, Brian's dad, and Kris' dad are all there trying to help alternate being with Kraig since he is having such a hard time. He will not stop thrashing around. She said they can hardly keep a diaper on him since he won't be still long enough.

The hospital was trying to give his medications to him by mouth but he won't swallow so they had just gotten him hooked up to IV Valium. Fortunately a bunch of the departments (genetics, surgery, and his general pediatrician) are all paying attention now and have decided to work to get the agitation under control, then focus on pain management. Right now he is just so out-of-control that they really can't do anything.

I know they appreciate your thoughts and prayers! It is a lot to handle right now and I know everyone is very overwhelmed at this point.

Tuesday, April 3, 2007 7:16 AM
Kris just called again. She said Kraiggy is having very severe muscle spasms. They tried lots of different medications all night to see what could get him to relax. They gave him Klonopin, Valium, and then managed to get him Oxycodone and Tylenol by mouth. He finally fell asleep with IV Benadryl added to all of that. She's already talked to the orthopedics resident who was with Kraig in surgery and they are still pretty much planning to do the second surgery on Thursday. He's in a lot of pain and stuff right now...she said last night his heart rate went up to 170! I'm not sure if he still has a fever or not. Hopefully they can get his pain under control today and help him to relax and feel better.

Tuesday, April 3, 2007 6:44 PM
Kraiggy finally slept today...from about 2:30am-3pm. Kris said he's been agitated since he woke up though...not quite as much, but his heart rate is still really high. He doesn't have a fever though, thank goodness. They are giving him Valium and Klonopin in addition to his pain medicine, so hopefully that will help. They definitely have to stay in the hospital tonight too though. He's still not eating and drinking so they are continuing IV fluids. Keep praying for his body to heal up and that Thursday's surgery goes well too!!!

Wednesday, April 4, 2007 12:16 PM
I only have a few minutes, I came down to the resource center while my brother sits with Kraig. Last night was horrible again. It was well after 2 AM before he calmed down enough to sleep. They just keep pumping with drug after drug and eventually it all catches up and he falls asleep.

They have held 2 does of his valium today because they want to get an eeg, thinking some of this may be seizure related as he is dx with seizures. We think it's mainly severe muscle spasms. You can feel his legs tighten up then the thrashing starts.

It's very heartbreaking to watch him in so much pain and discomfort. If his fever subsides I think they plan to take him to surgery tomorrow to remove the casts. It sounds like they may recast, but not in such a tight position. Then try more slowly to work up to neutral. Which will probably take a long time. I don't know yet.

Thanks for checking in and for all your thoughts and prayers, we really do appreicate it.

I do have my cell phone with me and I leave it on vibrate, so feel free to call if you want. I just wont answer it if I'm sleeping or preoccupied with Kraig.

Thursday, April 5, 5:30 PM
Sorry, I'm just now getting a chance to check in here. Kraig did not go to the OR today, he now has the beginning of pneumonia . Despite that, he actually looks better this afternoon. He is focusing and actually watching a little TV and reaching for us today. It's good to see Kraig acting more like his regular self.

He is now on IV antibiotics and we are not letting them give him the narcotics or the Ativan. We are hoping to control the spasams with the valium and then the pain with tylenol and motrin. He is still having involuntary movements, but not nearly as much as before and not the hard thrashing he was doing.

He does still have fever, well he did a few hours ago, it may be down now.

I just talked to Sharon, so she may be updating here as well. Kraig will be here through the weekend, surgery is now planned for Monday if we can get the pneumonia and fever under control. I talked to our wonderful anesthesiologist this morning and I asked him if he would do the surgery on Monday and he said "for you, yes"............gotta love that guy, he is wonderful and very cautious with Kraig.

Friday, April 6, 2007 9:54 AM
Thank you all............it really does bring us comfort to know so many of our MPS family are thinking of us and praying for Kraig's recovery.

There really isn't a whole lot to report since yesterday evening. He did not have a great night, but better than prior nights. I think the narcotics are starting to get out of his system, but he is still having these spastic movements. It's all very uncommon for him and it keeps him awake. As soon as he would start to fall asleep the movements would start and he'd be awake.

He is sleeping now. The nurse suctioned him and got some of that nasty stuff out so he is able to breath a little better. PT just came by but I turned him away since Kraig just fell alseep...........he better come back though.

Sunday, April 8, 2007 11:00 AM
Happy Easter Everyone!

Kraig is still in the hospital, but starting to look a little better. He's still having a lot of problems sleeping. He just can not get comfortable and then those movements start up which keep him from falling asleep and staying asleep. They have increased his Lamictal (they still think some of this could be seizure related) and his Valium. He is now taking all his meds PO, which is an improvement, although he still does not want to eat or drink much at all. We've been giving him liquids using an oral syringe, it takes forever, but he is getting more in that way. I have not talked to the surgeon yet today, but as long as his lungs look better and no fever the plan is to go to the OR tomorrow for a cast change.

Sunday, April 8, 2007 3:32 PM
We still do not know when/if surgery will be tomorrow. They are talking about starting "cheeseburger in a bag" since he is still not eating or drinking much. They also did away with our sitter. During the day that is fine, but Kraig really needs someone to watch him during the night since the bed rails are not very high. He had a sitter last night and I'm hoping since it's Easter we just don't have one during the day today. I asked the nurse, but she was not sure about tonight.

Monday, April 9, 2007 7:49 AM
eeeeeeeeeeeerrrrrrrrrrrrrrrrrrrrrrrrrrrr

We STILL do not know if he is going to the OR today. This is really ticking me off. He is NPO "just in case", however, food service just dropped by with menus.

Okay, so as I am typing the doctor came in and said they are taking him at 1 or 2 PM

Monday, April 9, 2007 8:32 AM
Things change minute to minute around here. This is crazy.................he has a freakin' temp now................he's 100.4, he hasn't had a temp for a couple of days until now. He is all flushed now, too.

So now he may not be going to the OR.

They are going to take the IV out and re-access him today, too. He's got his tubing all tangled up from the constant movement. I feel like we are trapped and will never get to leave.

Monday, April 9, 2007 12:32 PM
Did I say things change from minute to minute?!?!?!? It's really second to second around here. I don't know if that earlier temp was from lack of sleep and constant movement or what, but his temp was down for the next reading. He actually has now already been to the OR and is back in his room. From a surgical standpoint, it wasn't difficult today, however, from an anesthesia standpoint it was quite difficult. He did well this morning though, so we are very happy about that.

He will now have these casts for 4 weeks...........he's yellow and green now (John Deere colors). He was just given his valium, but I don't think he got a whole lot of it . I can see his leg spasam a little now, too. Lefty is not all the way to neutral, but without getting very invasive (like we haven't already), we are going to leave it as is for now. He did fix the left toe, but left the right toe alone.

He did not get an epidural this time, so I guess we will see quicker how this makes him feel. Hopefully they start the TPN soon so he can get some nutrition in his little body.

Until next time,
Kraig

Klenke Bowl 2007 raised just over $10,000! Thank you to all who helped make the event a success! www.bowl4kraig.com

To see pictures from Washington DC click HERE and HERE

Friday, April 6, 2007 7:28 AM CDT

First I guess I better say Happy Anniversary to mom and dad!

Okay now on to the update………………I’m still in the hospital and probably will be for several more days. I am feeling a little better despite the fact that I now have pneumonia. I was supposed to go to the OR yesterday to get my casts off and get new ones (not what I really want). However, because I had a fever and pneumonia it wasn’t safe. I am now getting IV antibiotics and it is planned for Monday to do the cast change.

I am not nearly as agitated as I was, but I still keep having these muscle spasms. They keep me from sleeping and getting the rest that I need. I am also getting sores all over my body from the constant movement. The wound care nurses came down yesterday and tried to fix up all those sores, but it seems like I keep getting new ones.

I didn’t sleep that great last night, but mom did get to sleep for a few hours since a sitter came in and watched me while she slept a little bit.

I’d really like to get up out of this bed and start walking again, but I guess that will not happen any time soon. PT came in yesterday to get me up and moving, but I was pretty tired and weak. They are supposed to come back twice today; hopefully I’ll feel up to moving around by the time they get here.

Until next time,
Kraig

Klenke Bowl 2007 raised just over $10,000! Thank you to all who helped make the event a success! www.bowl4kraig.com

To see pictures from Washington DC click HERE and HERE

Tuesday, April 3, 2007 6:49 PM CDT

Hi everyone...this is Leslie Phillips, updating for Kris.

Kraiggy is in the hospital right now. He has been having a lot of agitation, pain, increased heart rate, and has not been eating or sleeping. The next surgery on his ankles is scheduled for Thursday. At the moment, with a combination of medications, he was able to sleep for about 12 hours today and is getting IV fluids. Kraig was dealing with a fever and elevated white counts (signs of an infection) yesterday, so they cut windows in his casts to check the stitches...all of which are fine, thank goodness! His temperature has decreased today.

For the moment, they are keeping him in the hospital. He's still in a lot of pain, which they are working on, especially when they get the agitation under control. Fortunately, the prayers seem to be working and baby steps are being made in the right direction!

Thanks for checking in on Kraiggy!!!
Leslie

Wednesday, March 28, 2007 7:52 AM CDT

I WANT TO GET UP AND WALK!!!!! Why can’t people understand that?!?!?! I had my surgery on Monday and it did not go as planned. Mom posted a picture of my new “shoes” up above. I hate these stupid things and I want them off!

I will have to go back to the hospital for a second surgery next week Thursday. The surgeon could not get my feet to a neutral position with the first surgery, plus I had to be on my tummy and they did not want to flip me while I was in the OR. So I will have a second surgery, they will take the casts off and reposition my feet once again. Then a week to 10 days after that I will have to go back for a third surgery where they will take the casts off and reposition my feet and hopefully that time my feet will go to a neutral position. During the third surgery the doctor will then fix my toes.

This really stinks, I can’t do much of anything and I am not happy about that. I am supposed to be lying down most of the time with my feet propped up, but I’d rather sit with my feet down…………..Mom keeps getting after me about that. Sometimes I kick mom or dad with my casts; these things are kind of heavy so I think that hurts. I really don’t want to be so mean, but I just want everyone to understand that I just want to get up and walk!

Until next time,
Kraig

Klenke Bowl 2007 raised just over $10,000! Thank you to all who helped make the event a success! www.bowl4kraig.com

To see pictures from Washington DC click HERE and HERE

Sunday, March 25, 2007 5:36 PM CDT

I had a great time in Washington DC a few weeks ago. It was a very busy trip, especially the day we spent on Capitol Hill. You can see picture of our trip HERE and HERE

My treatment went pretty good this last week. Finally I got through a whole treatment without any serious or long lasting reactions. My doctor changed my pre-meds a little this week, so hopefully this is the right combination I need.

I am not sure I will have treatment this week because I am having surgery tomorrow. I am not looking forward to this at all. The surgeon is going to fix both of my feet by lengthening my heel cords and fixing a toe on each foot. It all sounds very painful to me. I would appreciate prayers that it all goes well tomorrow and my recovery is not too painful. I will have to wear casts on both feet for at least 6 weeks. Mom will probably come back sometime tomorrow to update my journal.

Until next time,
Kraig

Klenke Bowl 2007 raised just over $10,000! Thank you to all who helped make the event a success! www.bowl4kraig.com

Friday, March 2, 2007 8:25 AM CST

First of all, I want to THANK EVERYONE for coming out to Klenke Bowl last Sunday and for everything you did to make the day so successful! We raised just over $10,000 this year!!! All money is donated to the National MPS Society and will be used to further medical research and for family support programs. Mom needs to update the web-site, but you can check out www.bowl4kraig.com for more details.

My surgery has been scheduled for March 26th. I am not looking forward to this at all. I will have casts on both feet for at least 6 weeks following the surgery.

I had several issues with treatment yesterday. I did not want to be there at all and I let everyone know that. Ruth had to stick my port twice, the first time she got it on the rim and we knew if it was not done again that there would be problems later in the day with my port. I got stuck again, went down to my room, then when mom was turning on the TV I ripped the needle out of my chest. That hurt! Then when we were back in the treatment room, I moved during the poke, so Ruth had to get yet another needle. Finally, after the 4th poke the needle stayed in for the rest of the day. I got hives again, this time much earlier in the infusion than I have been getting them. I wish I would quit having so many problems during treatment. However, on the positive side, I have been able to get the full treatment.

We are leaving for Washington DC this weekend. Our family will be there for several days for the annual MPS Society conference and then mom is staying a couple extra days for the scientific conference. I get to see my friends Andrew and Patrick again this weekend, I’m excited for that!

Until next time,
Kraig

Saturday, February 24, 2007 10:00 AM CST

Treatment was long and boring as usual this week. I guess boring is okay, we don’t want treatment to be full of complications. I did have another minor reaction, hives once again, but they went away quickly and I got through the whole treatment.

Mom took me to see the Orthopaedic Surgeon yesterday. As we expected, he has recommended surgery on both of my feet. It all sounds very painful to me, so I’m a little scared about this, but I also want my feet to feel better. It would be nice to be able to walk without those toes curling under and being up on my toes. Mom has not scheduled the surgery yet, but she will probably schedule it within the next month.

Both of my feet will be in casts for 6 weeks. The surgeon is going to lengthen my heel cords and fix those two toes; he will actually shorten them and put a pin in each one. I’m sure that I won’t feel like walking for quite a while.

Okay, on to good news! My friends Andrew and Patrick are on their way to my house right now. They are driving here all the way from Ohio. They are coming so that they can attend Klenke Bowl tomorrow. Don’t forget, there are a lot of cool things in the auction and it will be a lot of fun to bowl! Check out our web-site for more information www.bowl4kraig.com. It is on Sunday, February 25th at 2 PM in Collinsville, Illinois at Camelot Bowl.

Until next time,
Kraig

Monday, February 19, 2007 3:59 PM CST

Treatment has been going okay, although I have continued to have hives at the end of my infusion. It’s always right before the flush. It’s frustrating, but at least it is a mild reaction.

Today I had to see the ENT, just my 6 month check up. He cleaned my ears, so now I can hear better and my ears are not bothering me so much. I have had a lot of trouble sleeping the past several weeks. This morning my dad found me sleeping on the floor…………..I don’t know how that happened. I just wish I could sleep better; I am so tired during the day.

Last week mom took me to see orthopedics. I am having a lot of problems with both of my feet. I have to see the surgeon this week. They are talking about doing surgery on both of my feet. The second toe on each foot is curved all the way under and I am walking on my toe nails. The nail on my right foot fell off several days ago. It hurts me to walk like this; my toes are purple now, too. However, I really do not want to go through surgery.

Don’t forget about the bowl-a-thon we are hosting this Sunday, February 25th at 2 PM in Collinsville, Illinois at Camelot Bowl. You can find all the details of the event at www.bowl4kraig.com.

Until next time,
Kraig

Wednesday, January 31, 2007 7:40 AM CST

It’s been a couple of weeks since I’ve updated…….sorry; life just gets a little hectic sometimes. I’ve had some trouble with treatment, well more after treatment than anything. I have not been able to sleep very well. When I can’t sleep it’s hard for me to keep quiet and I usually end up waking mom or dad. I like it when I have someone else to keep me company on my sleepless nights. Two weeks ago I just could not sleep at all, and I started to feel weird during the night. Mom got up and gave me some Motrin for pain, but then she noticed that my cheeks were red and my lip was a little swollen. She gave me some more medicine and eventually I was able to fall asleep, but not until 5 AM. That whole weekend was like that, I just could not fall asleep.

Treatment last week was a little better. I didn’t have any reactions during or after, which I was very happy about. However, I still had some difficulty falling asleep, but I wasn’t as restless as I had been. I’m hoping this week is even better.

Don’t forget about the bowl-a-thon we are hosting on Sunday, February 25th at 2 PM in Collinsville, Illinois at Camelot Bowl. You can find all the details of the event at www.bowl4kraig.com.

Until next time,
Kraig

Tuesday, January 16, 2007 10:30 AM CST

Another week and another infusion. I had problems once again last week. My doctor added a new med so that I wouldn’t get nauseous like I had been and that did work, I did not get sick to my stomach. I may, however, have sensitivity to the Betadine used to clean my skin prior to my infusion. After Angie accessed my port, it got very red around that area. She did say that if it happens again, they have something else they can use instead of Betadine.

The infusion was going along pretty good; I was real tired and fell asleep again for a little while in the morning. After about 40f the medicine was infused I started to get restless and mom noticed that I had those stinkin’ red blotches on my face and chest again. Angie stopped the infusion and they did go away, but I got my second dose of Benedryl anyway. My doctor came down to see me and said we should try to start the infusion again after about 20 minutes. We did and I was able to finish my treatment, however, those red blotches came and went a few times so I had to stay at a slower infusion rate, which meant we had to be there a lot longer.

I’m not sure what my doctor is going to do this week. He did say that he may increase my steroid. I guess I’ll find out on Thursday.

Don’t forget about the bowl-a-thon we are hosting on Sunday, February 25th at 2 PM in Collinsville, Illinois at Camelot Bowl. You can find all the details of the event at www.bowl4kraig.com.

Until next time,
Kraig

Tuesday, January 16, 2007 10:30 AM CST

Another week and another infusion. I had problems once again this week. My doctor added a new med so that I wouldn’t get nauseous like I had been and that did work, I did not get sick to my stomach. I may, however, have sensitivity to the Betadine used to clean my skin prior to my infusion. After Angie accessed my port, it got very red around that area. She did say that if it happens again, they have something else they can use instead of Betadine.

The infusion was going along pretty good; I was real tired and fell asleep again for a little while in the morning. After about 40% of the medicine was infused I started to get restless and mom noticed that I had those stinkin’ red blotches on my face and chest again. Angie stopped the infusion and they did go away, but I got my second dose of Benedryl anyway. My doctor came down to see me and said we should try to start the infusion again after about 20 minutes. We did and I was able to finish my treatment, however, those red blotches came and went a few times so I had to stay at a slower infusion rate, which meant we had to be there a lot longer.

I’m not sure what my doctor is going to do this week. He did say that he may increase my steroid. I guess I’ll find out on Thursday.

Don’t forget about the bowl-a-thon we are hosting on Sunday, February 25th at 2 PM in Collinsville, Illinois at Camelot Bowl. You can find all the details of the event at www.bowl4kraig.com.

Until next time,
Kraig

Sunday, January 7, 2007 11:37 AM CST

Happy New Year!!!

Wow, it’s been almost a month since I’ve updated. I had a good Christmas and got lots of nice gifts and some money. Mom and Dad took me to Target the other night so that I could spend one of my gift cards. I bought another movie.

Treatment has been going okay, I guess. I have been getting nauseous about 45 minutes after my infusion begins though. It doesn’t last real long, but it is no fun to feel that way. My doctor may change the way the nurses give me my pre-meds this next week, the nurse was going to talk to him and see what he wants to do. I also have problems with my tummy throughout the week. I hope we can get this all figured out and I can have an uneventful treatment one of these days.

I also had to see the Ophthalmologist this week. That appointment was no fun. I hate when they put those drops in my eyes. This time they also stuck this thing in my eye to try and get a pressure reading. The doctor said my eyes look pretty good, but next time I go in for surgery he wants to check out my eyes while I’m under anesthesia. He also said I am far sighted (which we knew), but that I don’t have to wear glasses if I don’t want to. That was good to hear because I don’t want to wear glasses.

Mom needs to update the information above about the bowl-a-thon. She finally set the date for our next event. It will be on Sunday, February 25, 2007 at Camelot Bowl in Collinsville, Illinois. You can check out www.bowl4kraig.com for all the details. Please come and help us raise money for the National MPS Society. If you have anything to donate for the silent auction, raffle or if you want to sponsor a lane or be a listed sponsor on our event t-shirts please call us or email my mom at kris@mpssociety.org.

Until next time,
Kraig

Tuesday, December 19, 2006 9:43 AM CST

I added a Journal entry last week, but for some reason it got lost in cyber space. Anyway, I've been really busy the last week and a half. My very good friend, Leslie, has been visiting us, so we have been having fun doing all sorts of stuff. Last week we went to the Fox Theater and saw A Christmas Carol, we had a birthday party for me, we've been out to eat and to see movies, too. I'm going to be sad tomorrow when she has to leave.

My treatment has gone pretty good the last couple of weeks, although I've had this same stupid cough for weeks now. Dr. M thought perhaps it could be a sinus infection, so mom took me to see the Ped. last week. My regular doctor was not in, so we had to see another doctor. He agreed with Dr. M and prescribed an antibiotic, nasal spray and Zyrtec. I've been taking this stuff, but I don't think my system likes the Zyrtec at all. Mom quit giving it to me and we are going to talk to Dr. M on Thursday about this. I have an office appointment with him prior to my treatment this week.

I hope you all have a Merry Christmas!

Until next time,
Kraig

Sunday, December 3, 2006 4:14 PM CST

Happy Birthday to me!!! I’m 15 years old today!

I woke up feeling kind of stuffy and a little lousy. Not what I really wanted on my birthday. We have been without power at our house since Thursday night when an ice and snow storm hit our area. I went to treatment on Thursday and it took us over 2 hours to get home that night since it was sleeting. I really hope we get our power back today, I miss my TV. However, it’s not looking too good; there is no one in sight to fix the line that is down around our house. We ate lunch at Applebee’s today and Dad asked the waitress to sing Happy Birthday to me, I thought that was pretty cool!

Treatment went pretty good on Thursday. I got through my whole treatment without any major reactions. We went at the same rate we did last week and we did my pre-meds through the IV. Dr. M came down to see me and we talked about his move to another area hospital. I guess we will have a big decision to make in a couple of months.

Mom uploaded a couple pictures of our icy snow covered house and property if you want to see them, there are a few other pictures from around the area, too. CLICK HERE FOR PICTURES
AND HERE

Until next time,
Kraig

Happy Birthday Kraiggy, we love you buddy!
Love, Mom, Dad and Chels

Sunday, December 3, 2006 4:14 PM CST

Thursday, November 23, 2006 9:10 AM CST

Happy Thanksgiving!

I had lucky #13 yesterday. Mom was a little worried that I would have problems again yesterday, but it all went pretty good, just a few little problems. Angie and Vicky took me into the treatment room to lay me down to access my port again, and I only had to get one poke. I like it when I don’t have to get poked a bunch of times. Chels went with us yesterday, she looked funny with her mask on……LOL. She came in the treatment room because she wanted to see what it was like when I get my port accessed, so she had to wear a mask just like me.

Angie gave me all my pre-meds through my IV, which is what Dr. M wanted. I got Benedryl and a steroid this time. I was really tired, but there was too much going on, I didn’t fall asleep. Mia Hamm came to visit me, no she doesn’t play soccer, she is a therapy dog that visits kids in the hospital. I also got a visit from the silly clown doctors.

I did get a little red in the face and an increase in my resp. rate right after Angie started my Elaprase, but that didn’t last too long. Angie kept my rate at 16 ml/hr for about an hour and I think that helped. I got another dose of IV Benedryl mid way through the infusion and then when I was ramped up to 32 I did get a few hives, but they didn’t stick around for too long either.

I was able to get all of my infusion. That is the first time in several weeks I’ve been able to get it all. Chelsey says it is because she was there, she says she is my lucky charm!!

I’m looking forward to eating some turkey today, and my favorite part of the meal, dessert! Thanks for checking in on me, don’t forget to sign my guestbook because I like to see who has been here to visit.

Until next time!
Kraig

Thursday, November 16, 2006 8:09 PM CST

Today was treatment #12. I can’t believe it’s been almost 3 months now that I’ve been getting Elaprase.

Mom took me to treatment today and I did not want to get out of the car out first. I was really tired and just didn’t want to get moving. I was so happy that Amanda was able to access my port on the first try, so I only had 1 poke this week!!!

After I got my pre-meds I just couldn’t keep my eyes open, I feel asleep before my Elaprase came up to my room. Dani’s mom came to see me again, but I was sleeping…….sorry Kelli, I hope I’m awake next time.

Around 11:30 AM I woke up because I was starting to shake again. I don’t like that; it scares me when that happens. Amanda paged Dr. M to let him know. He came down to see me and said that none of the patients that he followed in the trial had this shaking, but that there were patients that this did happen to. He decided to stop my infusion and give me another med through my IV to stop the shaking. I did work and 30 minutes later Amanda started the Elaprase again. I just didn’t feel quite right and was not hungry at all. After checking my vitals, Amanda told mom that my temperature was going up. She waited 15 minutes and checked again and it went up a little bit more. She called Dr. M back who said we better call it quits for the day; he didn’t want to risk a worse reaction.

I got almost half of the Elaprase today before we stopped. Once we got home I did start to perk up a little bit and my temperature came back down. I hope that I can sleep tonight because I am really tired.

Dr. M said that he will probably add another pre-med next week, a steroid. He’s also planning to give me my other pre-med through the IV next week and probably just half to start. He thinks it might be taking too long to work in my system when I take it by mouth. I just hope we can get all this figured out so that I can get a full infusion and not have these silly reactions.

Until next time!
Kraig

Infusion day pictures:
Infusion #1 August 31
Infusion #2 September 7
Infusion #3 September 14
Infusion #4 September 21

Monday, November 13, 2006 8:25 AM CST

It’s Monday morning already and I haven’t given an update about my last treatment. Let's see if I can get this done before I have to go to school today.

I had treatment on Friday since I was off school (I would have liked to have that day to do something a little more fun than sitting in that darn hospital). Anyway, dad was off of work, too, so he went to my treatment. Angie only had to poke my port one time this week! My medicine got to my room and everything was going good, I fell asleep again this time. That benedryl really makes me tired and since mom and dad were with me, I knew they would watch over me, so I dozed off for a while. About half way through the infusion my port started acting up again, it started to leak. Mom and dad had to wake me up, and do you know why they had to wake me up? So that the nurses could poke me again…….eeerrrrr I don’t like that very much, especially since I was sleeping so well. Anyway, they tried to start an IV so that I could finish getting the rest of my medicine. Debbie tried to start an IV in my left hand 2 times with no luck, so then Vicky tried in my right arm. She got it on the first try, but boy did that really hurt and it started to bleed all over the place. We finally got all situated and started the IV up again. I got a little more medicine then I started shaking like crazy, my teeth were even chattering. I think this freaked out mom and dad a little bit. Dr. R came down to check on my port and then got to see me shaking. He said it was a reaction to the medication, so we had to stop my infusion again and they gave me more benedryl. We were going to start the infusion back up after 30 minutes, but then I got a fever, so we had to stop the infusion for the day. I got about 75f my medicine though.

Next it was time to figure out why my port keeps messing up. We had to go down to x-ray so that they could shoot some dye in my port and take some pictures. Vicky left my IV in and my port accessed when she sent me down. The first pictures showed that the needle was not in the right place, the doctor said the placement was off my just a smidge (a millimeter to be exact). Vicky came down to x-ray to take my port needle out and put it back in again (in case you are counting the number of pokes, we are now up to 5 for the week). So we got that all done and then they took some more pictures of my insides. Apparently, my port does work correctly, but because of the placement, the nurses are having a little trouble getting that needle in there correctly, or else it shifts sometime during the course of my infusion. I just hope we can get this figured out, I DO NOT like getting poked that many times, that is the whole reason I agreed to get this stinkin’ port.

So I guess I go back again on Thursday and hope my port works right and that darn needle stays where it is supposed to.

Thanks for checking in on me, don’t forget to sign my guestbook when you are here because I really like reading all those entries.

Until next time!
Kraig

Infusion day pictures:
Infusion #1 August 31
Infusion #2 September 7
Infusion #3 September 14
Infusion #4 September 21

Friday, November 3, 2006 7:43 AM CST

Dear Friends and Family,

Grandpa Klenke went to my treatment with mom and me yesterday. It was fun to have him along. Angie got my port accessed on one try, and this time they didn’t lay me down, they let me sit up while poking me. I liked that a lot better, plus I was still able to see TV! Everything looked good, the infusion was going just fine and I fell asleep for a little while. Mom better not get used to that, but I was just really tired yesterday and needed a little nap. Mom said that Kelli, Dani’s mom, came down to visit me while I was sleeping. Sorry I missed you Kelli, I hope I get to see you next week. Grandma Clayton, Sue and Judy also stopped by on there way out of town to see me for a few minutes.

I think Grandpa was a little surprised at how long treatment really takes each week. I can tell people these things, but until you sit there with me all day, you don’t really realize just how long it is. Angie started to do my flush and all that seemed fine, until the final Heparin flush was pushed in. Either my port is cracked (which is not good) or when I moved the needle dislodged and caused the problems. Angie had to call Dr. M and the surgeon to see what they had to say about all this. Dr. M came down and told us to be prepared for more tests next week if my port doesn’t work right again next week.

I sure hope I don’t have to have surgery again, but I’d like to have a port that works properly!

Until next time!
Kraig

Infusion day pictures:
Infusion #1 August 31
Infusion #2 September 7
Infusion #3 September 14
Infusion #4 September 21

Monday, October 30, 2006 7:58 AM CST

Dear Friends and Family,

It was a very stressful week for treatment! I was (and still am) out of town, so my parents took Kraig on Thursday. They arrived, the nurses accessed his port, gave him pre-meds and ordered up his Elaprase, however, after a lengthy delay the drug never arrived. Come to find out, it wasn't even in the hospital yet. After waiting around for a few hours to see if FedEx was going to deliver it, they finally left because it was getting too late in the day to start treatment. They rescheduled for Friday, thankfully my parents were able to clear their calendar for another day at the hospital.

They arrived on Friday morning, once again accessed Kraig's port, gave him pre-meds and ordered up the Elaprase. The Elaprase was at the hospital and it did arrive in his room. However, this time after the drug arrived in his room his port would not flush, a clot had formed. Dr. M ordred TPA (clot busting stuff) and asked the nurses to let it sit for 30 minutes (instead of the usual 2 hours) and try to flush again. They were starting to get into a time crunch again. In the meantime, I called and talked to the nurses and we decided to try to access him with a regular IV through his hand, that way he could start getting his treatment and the TPA could sit longer and do it's job. Thankfully they were able to access a vein with one poke, so the Elaprase was finally started.

After a few hours they did try to flush his port again, but it still would not flush properly. I'm pretty concerned about that when it comes time for treatment on Thursday this week. Dr. M talked to the surgeon and oncology, but they don't seem overly concerned about it since this is the first time this has happened. I, however, think it's concerning since this is a new port. I'm going to have to make some more phone calls about that this week.

The treatment was going well until he had another reaction. No hives, but a nasty little rash developed. He was given 25 mg of IV benedryl, which usually clears it right up, but this time it lasted until Saturday afternoon.

I can't believe all the complications Kraig had this week for treatment. I'm worried about Thursday and hope it goes smoothly for Kraig's sake. He was exhausted (as were grandma and grandpa) after all of that last week.

Until next time!
Kris and Kraig

Infusion day pictures:
Infusion #1 August 31
Infusion #2 September 7
Infusion #3 September 14
Infusion #4 September 21

Friday, October 20, 2006 7:11 PM CDT

Dear Friends and Family,

It’s been a very busy week for Kraig. Tuesday he had an appt. with the cardiologist. Dr. S wanted an echo and EKG, so we got that out of the way. She said his heart looks pretty good, although his resting HR was a little high and he has a little more thickening. She thinks we need to consider trying the BiPAP again.

On Wednesday, we had to be at the hospital at 8:30 AM for Kraig’s port placement surgery. Kraig pre-op blood work looked good, so we went ahead with the surgery, although there had been an emergency that morning which delayed his surgery a bit. Kraig did well through the surgery, but the chest x-ray did show lung ateleccasis on the right side, so we needed to watch him closely for any breathing problems. He did not want to wake up after surgery, but he did finally stir a little and took a few sips of Sprite, so we finally got out of there around 4 PM or so.

Kraig was released to go to school on Thursday if he felt up to it, but he ended up staying home. He slept pretty well throughout the night and the surgery site looked pretty sore, so I let him stay home and rest another day.

Today he had infusion #8, which also went pretty good. The surgeon forgot to tell me what length needle Kraig needed, so Angie still had to poke him 3 times before she got access. The port site was still very tender today, so Kraig was pretty jumpy. We were able to use EMLA cream to numb the skin over his port, so that helped a little. He looked more free today not having that IV in his hand or arms; I think this port is going to work out really well. He got a little antsy about half way through the infusion which had me a little worried, but thankfully he didn’t have any reactions.

I got meet Dani and her mom this morning! Dani is dx with MPS I and is beginning the transplant process. She is a very cute and sweet little girl. I hope to visit with them again as they will be spending a lot of time in the hospital over the next few months. Please keep Dani and her family in your prayers!

Next week grandma and grandpa will be taking him to treatment on Thursday since I will be out of town. I’ll be going to Maine to work in the MPS Society office for a couple of days then attending Laurie’s wedding. I’m excited to get away for a little while and relax.

Until next time!
Kris and Kraig

Infusion day pictures:
Infusion #1 August 31
Infusion #2 September 7
Infusion #3 September 14
Infusion #4 September 21

Thursday, October 12, 2006 7:45 PM CDT

Dear Friends and Family,

Kraig had infusion #7 today. Chelsey went with us so that she could see what Kraig’s treatment is like. She and Kraig also had a dental appointment this afternoon in the hospital.

We got there a little early so that they could also do Kraig’s pre-op blood work. Ruth tried to get him in the left hand, but Kraig was not really showing any good veins and it blew. Angie went ahead and called the IV team right away since it looked like it was going to be a difficult IV week again. They came down and got Kraig on the first try in his left hand. His blood just did not want to run and we didn’t want to loose that access so they flushed it and called outpatient lab to come over and do his blood work. So he still had to have 3 pokes this week.

Kraig did really well and he did not have any reactions this week, so we are very happy about that. After the infusion the kids went down for their dental appointment. It was just a routine checkup.

Kraig has a cardio appointment next Tuesday, and then on Wednesday he has surgery to place his port. There is only a half day of school on Friday so I scheduled his next infusion on that day. It will be nice to have the port and not have to worry each week about finding a good vein.

Until next time!
Kris and Kraig

Infusion day pictures:
Infusion #1 August 31
Infusion #2 September 7
Infusion #3 September 14
Infusion #4 September 21

Thursday, October 5, 2006 9:12 PM CDT

Dear Friends and Family,

Another long day!!! Kraig had an appointment with a surgeon this morning. That went well and we have scheduled his port placement for October 18th. Next week he will have some pre-op blood work as well as a dental check up all on treatment day.

ERT went well, but Kraig had another reaction. Kraig had some oral benedryl prior to treatment and he did well with that. We followed the same slower infusion rate and I got a little nervous when we increased his rate to 24 ml/hr because that is where he was reacting the last 2 weeks. This week he did fine and got through the entire infusion, then the flush was started. He only had 1 ml of saline left to flush and I noticed his face was really red, at first I thought that was from rubbing his eyes and face, but upon closer inspection I knew it was a reaction. He started getting really uncomfortable, growling and bouncing around in the chair. By the time Dr. M came down he was covered in a rash and hives. It was all over his arms and legs and he had hives on his chest. They gave him 25 mg. of benedryl through his IV and in no time the reaction was gone.

Dr. M will be at the ASHG meetings next week, so there will be another doctor on call to take care of Kraig if a reaction would occur. We may spread out his dose of benedryl next week. Since the infusion takes so long Dr. M feels it may be better to spread out the benedryl to prevent a reaction from occurring at all.

Until next time!
Kris and Kraig

Infusion day pictures:
Infusion #1 August 31
Infusion #2 September 7
Infusion #3 September 14
Infusion #4 September 21

Thursday, September 28, 2006 7:44 PM CDT

OCTOBER 3, 2006 UPDATE………..I’ve been trying to schedule an appointment with a surgeon to talk about a possible port placement, but I’ve been having a little trouble getting that scheduled. Finally last Friday I got a call from surgery and set up a consult for next week just prior to Kraig’s treatment. Then today I got another call from surgery, they said that Dr. Martin wanted Kraig to been seen sooner rather than later, so his appointment has been moved to this Thursday just prior to his treatment. More than likely we will opt for a port, I think it will make Kraig’s treatment much easier on him.

Dear Friends and Family,

Kraig had another reaction this week. It was such a good IV week, too. Vicky got him with one poke and in his left hand again. He seemed pretty comfortable today, his HR and BP were really down compared to last week. We started him out slow, 8 ml/hr for 15 mins, then up to 16 ml/hr for another 15, then we went up to 24 ml/hr and were going to hold there for most of the infusion before finishing him out at 32. However, Kraig had other plans I guess. He reacted about 30 minutes into the 24 ml rate. I was across the room and thought I saw red spots on his face, upon taking a closer look sure enough there were red spots not only on his face but all over his chest. The hives were more prominent this week than last. The infusion was stopped and we called his doctor. Dr. Martin didn’t want to start the infusion again this week, so Kraig only got about ¼ of his meds this week. We ended up giving him 50 mg of benedryl through his IV. This did the trick; the hives went away after 45 minutes or so. We stayed in the infusion center for about an hour and a half to make sure he was okay, and then we were free to go home.

The plan next week includes pre meds 30 minutes prior to his infusion. Dr. Martin would like to stick to the current slower infusion rate, so hopefully that will work. If not, I guess we will have to slow him down even more.

This is frustrating and scary to see Kraig reacting already, but I guess it’s just a bump in the road for now. The treatment is definitely working. I measured his belly again this week and he is down 2 inches since starting treatment. That means his swollen organs are starting to go down to the normal size they should be. This is making him more comfortable.

Kraig was a trooper, as usual again this week. He has handled all of this really well.

Until next time!
Kris and Kraig

Infusion day pictures:
Infusion #1 August 31
Infusion #2 September 7
Infusion #3 September 14
Infusion #4 September 21

Thursday, September 21, 2006 8:56 PM CDT

Dear Friends and Family,

Infusion number 4 is now history. There was a little problem last week with the drug arriving before IV access; it’s not supposed to be in Kraig’s room until an IV is placed. This is done because Elaprase is very expensive and Kraig is considered a difficult IV, his skin is thick and his veins roll and easily blow. If the drug is mixed it has a very limited shelf life, like just a few hours, and then I think it can only be refrigerated in the mixed form for 24 hours. So they were very cautious about ordering Elaprase this week.

It took 2 pokes to get an IV today. Amanda did his IV again this week. She may have had it on the first poke, but she was trying in his right arm (the bend), which is where she got him last week, but as she was digging around it apparently hurt and Kraig jerked, he jerked enough to get the needle out. Amanda decided to look around for a better vein and ended up getting him in his left hand again. This seems to be easier on Kraig, he barely moved as the needle went in. It took an hour after the IV was in to get the drug up to his room, so he didn’t get going until 10:45 AM again this week.

The IV was dripping for about 45 minutes when I noticed his face getting a little red, then I saw a couple of red blotches. I told Ruth about it, so we checked him out and saw that he had the blotches on his chest as well. To be safe, Ruth paged Dr. Martin to come and take a look. Dr. Martin didn’t want to give Kraig Benedryl unless absolutely necessary, so he cut the IV rate time in half, which meant a lot longer infusion time. It had been taking 3.5 hours to infuse the Elaprase, but slowing the rate this week meant it would take an extra hour, plus the normal flush time. After slowing the infusion rate, the hives went away after an hour or so. Kraig did well with the slower rate. His infusion didn’t get done then until after 3 PM, then with the flush and 15 minute wait, it was 4 PM before we got out of the infusion clinic.

After we got there this morning, Ruth commented about Kraig’s face looking thinner. That was really nice to hear, because I have felt like his face seems thinner, but since I see him every day I just wasn’t sure. I did measure his tummy last week before infusion #3, it was 32 3/8 and then I measured it right after the third infusion and it measured 31 ½!!!!!!! I'll have to take another measurement to see if his tummy has gotten even smaller now. That is so AWESOME to know that the drug is working! Dr. Martin said that he will do a physical exam on Kraig in a couple of weeks.

I went ahead and set up all his appoints up through November. Most of his infusions will happen on Thursday, however, I did schedule 2 Fridays when there is no school, and then of course he can’t have his infusion on Thanksgiving Day, so we will have to do it on Wednesday that week.

Kraig has done well since we’ve been home tonight, the hives are gone and no other reactions.

Until next time!
Kris and Kraig

p.s. There was an artist in clinic today, he drew Kraig's picture. I uploaded the sketch, check it out in the photo album! Of course Kraig got a visit from Nel again today, she was decked out in daisies today.

Infusion day pictures:
Infusion #1 August 31
Infusion #2 September 7
Infusion #3 September 14
Infusion #4 September 21

Friday, September 15, 2006 3:48 PM CDT

Dear Friends and Family,

Kraig has now had 3 successful treatments. Last week went very smooth, the nurse was able to get an IV started with only one poke and he was hooked up and going with 40 minutes of our arrival. This week, however, was a bit more of a challenge. It took 4 nurses and 5 pokes to finally get an IV in. I just hate that and I feel so bad for Kraig. He is such a good boy, though, he has yet to shed a tear over any of this, and he has handled it all very well each week. I am very proud of him!

I have called to try to schedule a time to talk to a surgeon about a possible port; however, Genetics is going to have to call first before they will even let me schedule an appointment. That seems funny to me because it was the genetics department that gave me the number to call myself to schedule an appointment. Kraig still needs to have several treatments before he can go back to the OR. We’ll have to see how Kraig does over the next couple of weeks, and then talk to a surgeon before we make a decision on the port.

After Kraig gets his IV in, we wait for the medication to arrive. Once he is hooked up and the meds are dripping it takes 3 and half hours for the treatment, then about 30 minutes for the flush and then we wait for 15 minutes to make sure no reactions to the treatment occur. After that we are free to go. It is a long day and we are beat by the time we arrive back home. Kraig is usually pretty happy as long as he has something to eat and there is something he likes on TV.

I have been keeping a detailed journal and am tracking Kraig’s progress there. His tummy seems to be getting smaller and a little softer. We haven’t really noticed any other significant changes, but it’s still early on. You can check out pictures from Kraig’s first infusion day HERE !

Until next time!
Kris and Kraig

ELAPRASE is approved for patient use in the USA, CLICK HERE for the press release

“Regulatory approval of ELAPRASE will enable physicians to move needy patients beyond palliative care and make Hunter syndrome a treatable disease,” said Joseph Muenzer, MD., Ph.D, of the University of North Carolina at Chapel Hill. “Until today, there were no options for addressing the underlying cause of this devastating disease.”

If you would like to view the press release from Shire giving details about Elaprase CLICK HERE

Tuesday, September 5, 2006 1:40 PM CDT

Dear Friends and Family,

Kraig had his very first infusion of Elaprase last week Thursday. We are very pleased with how well Kraig handled the day. We had a bit of a scare Wednesday, we got a phone call telling us that the medication had not arrived at the hospital, but that it was “supposed” to arrive in time for Kraig’s infusion on Thursday. They pushed back Kraig’s appointment time in hopes that the meds would be there. We got to the hospital a few minutes early and saw Dr. Martin in the hallway, he asked if we were ready and if we had any questions. Of course my first question was “Is the medication here?” and it was. WHEW!!!!! It did take 3 pokes to get that IV started in Kraig, his veins were not the most cooperative, but the nursed in the infusion center are very nice and were very gentle with Kraig. He wasn’t happy being poked, but he handled it very well, not one single tear!!! They ended up getting IV access in his left arm, in the crook of the arm. That worked okay, but the IV did take a little longer because his arm was bent. It took a little over 3 hours for the infusion. Kraig’s BP and temp did go up a little during treatment, but nothing alarming. The nurses said that is to be expected. They checked his vitals every 15 minutes for about the first 90 minutes of the infusion, then spread that out to every 20 minutes or so in between vitals. You can check out pictures from infusion day HERE if you want to.

We are scheduled for every Thursday in September at 9:00 AM. I guess we will eventually get into this routine. We may have to alter the day of the week from time to time if something unavoidable comes up in our schedule. I think as long as we keep Kraig occupied during treatment, he will do okay. We are going to talk to a surgeon sometime soon to see about getting a port placed. However, we are in no hurry to rush Kraig back into the OR, he had a rough time during his last surgery in July. He needs to have several treatments in him before he has surgery again.

Kraig did sleep well for the first 2 nights following surgery, and then he had trouble again. I don’t know if he was just so tired out from treatment day or what. We think his stomach feels a little softer than before, and perhaps is even a little smaller. It’s exciting to finally see Kraig on treatment and we can only hope for good things to come.

ttfn,
Kris and Kraig

ELAPRASE is approved for patient use in the USA, CLICK HERE for the press release

“Regulatory approval of ELAPRASE will enable physicians to move needy patients beyond palliative care and make Hunter syndrome a treatable disease,” said Joseph Muenzer, MD., Ph.D, of the University of North Carolina at Chapel Hill. “Until today, there were no options for addressing the underlying cause of this devastating disease.”

If you would like to view the press release from Shire giving details about Elaprase CLICK HERE

Wednesday, August 30, 2006 11:07 AM CDT

THURSDAY'S UPDATE FROM LESLIE
This is Leslie, sneaking on here to update!!! Kraig and family are on their way home after a successful infusion today! He did very well and we are all delighted!!! Kris will be along soon with a detailed update...CONGRATULATIONS TO THEM!!!

**4:30 PM updated****we are slightly delayed tomorrow, the drug has yet to arrive at the hospital, it is due to arrive at 10 AM tomorow, so they pushed us back to 10 tomorrow. Please pray the drug arrives at 10******

Tomorrow is a BIG day for Kraig! After years of waiting (11 years and 8 month and 2 days since diagnosis) Kraig will finally receive the enzyme he is missing via IV infusion. We are very excited, but scared and nervous at the same time. Today we are concentrating on keeping Kraig hydrated, he needs to drink lots of fluids and stay away from caffeine, this will hopefully make the IV easier tomorrow. We are scheduled to arrive at the infusion center tomorrow at 8:30 AM. They will have to access his veins before they order the drug, so please pray they can easily find a good vein. The plan is to run the infusion for 3 hours. I have started packing our ERT survival bag which of course includes lots of videos for Kraig; we have to find something that will occupy his time during the long infusion each week. I’ll be sure to take lots of pictures and video of this miraculous event!

It’s been a long road to get to this point. Even after the FDA approved the drug just last month, it has taken a lot of phone calls to get everyone on the same page so that Kraig can finally get enzyme.

I’ll update Kraig’s journal as soon as I can!

ttfn,
Kris and Kraig

ELAPRASE is approved for patient use in the USA, CLICK HERE for the press release

“Regulatory approval of ELAPRASE will enable physicians to move needy patients beyond palliative care and make Hunter syndrome a treatable disease,” said Joseph Muenzer, MD., Ph.D, of the University of North Carolina at Chapel Hill. “Until today, there were no options for addressing the underlying cause of this devastating disease.”

If you would like to view the press release from Shire giving details about Elaprase CLICK HERE

Tuesday, July 25, 2006 5:17 AM CDT

Hi Family and Friends!

Yesterday morning mom went to town while I stayed home with Chels and Leslie and while she was gone Laurie called her with the best news ever. ELAPRASE HAS BEEN APPROVED BY THE FDA!!!!! Do you know what this means?!?!? MPS II Patients now have a treatment option. Mom says I can finally get ERT (enzyme replacement therapy). We have been waiting for this for so long and now it's finally here.

We were all so happy to hear this news. Mom was crying and we were jumping up and down and hugging, then we celebrated and went to my favorite place, Bobby's, to get some yummy chocolate ice cream!

We are leaving in a couple of hours to go to Kentucky for the annual MPS Society conference. We will see all of our MPS family and friends, the pharma company will also be there.

We will continue on with the celebration all week long!

Until next time,
Kraig

click here for the Elaprase Press Release

“Regulatory approval of ELAPRASE will enable physicians to move needy patients beyond palliative care and make Hunter syndrome a treatable disease,” said Joseph Muenzer, MD., Ph.D, of the University of North Carolina at Chapel Hill. “Until today, there were no options for addressing the underlying cause of this devastating disease.”

Tuesday, July 25, 2006 5:17 AM CDT

Thursday, June 15, 2006 8:23 AM CDT

It's been months since Kraig's journal has been updated, so I am finally taking the time to do that today.

I added a count down ticker to the journal above. We are anxiously awaiting the approval of Elaprase. We thought we would have approval by now, but about a week before the deadline of May 24th the FDA announced they are extending their review for another 90 days. We are told this boils down to a labeling issue. At any rate, we hope this process moves along quickly and Kraig and all kids diagnosed with MPS II will have the option of ERT very soon.

Kraig continues to have problems with sleep. He has some good nights, but those seem to be few and far between. We have found him on the floor numerous times, which is very scary. He can not get down to the floor willingly any more, he just doesn't have that flexibility, so he must be falling out of bed. I have set up the video camera to capture this, but of course each and every time I have stayed up to work the video, he sleeps through the night without incident. That's good for Kraiggy, but not so good when I am trying to find out what is going on. Kraig's Neuro has decided to set up a 24-48 hour video EEG, hopefully this test will give us some answers. We have already decreased his anti-seizure meds because his blood levels were high, but with the decreased dosage, he is still having problems.

Kraig's medical schedule is going to be busy for the next several weeks. He also has surgery scheduled for July 5th. We are very nervous about surgery. We originally thought that by July 5th he would have a couple doses of Elaprase (enzyme) in his body, but since the delay of approval that is not going to happen. However, we really can't delay the surgery any longer. Kraig has some dental issues that need to be addressed now, so we have to proceed as scheduled.

Kraig will have a pre-surgery physcial and pre-anesthesia appointment prior to the surgery. Then the week following surgery he is scheduled for a swallow study and the 24-48 hour video EEG. It's a lot in a short time period, but we will be glad once it is over with.

Leslie is coming to visit and help out in July. We are very excited about her trip here. She will be here for about 5 weeks.

Well, I guess that's about it for now. Kraig is going to Camp Barnabas once again this summer. He will be there at the end of June.

Until next time!

Kris and Kraiggy

Saturday, December 3, 2005 0:02 AM CST

HAPPY 14TH BIRTHDAY KRAIGGY!!!!

Wow, I can’t believe you are 14 already. I love you so much Bub Bub and am so lucky to be your mommy! I remember the day you were born like it was yesterday. You sure made me wait a long time, but you were definitely worth the wait. I have been so blessed to see your beautiful smile for the last 14 years. I love to see you face light up when we light up your candles and sing Happy Birthday, you sure do love that song.

I hope you like the photo story I made for you. I’ll post the link here so your family and friends can see it too. Kraig’s Photo Story **it will take several minutes for the photo story to buffer, even if you have high speed access…..the file is over 18 mb and the story is 7 minutes and 30 seconds long…..but well worth the wait**

Love,
Mommy

P.S. If you would like to view the press release from Shire giving details about Elaprase CLICK HERE

Monday, November 28, 2005 11:37 AM CST

Hello Friends and Family!

I've been so busy this last month! After mom and I got home from Chapel Hill, we left for Scottsdale a few weeks later. Well, mom and Chels flew out a couple days before I flew out there with dad. We all attend the MPS Society annual conference. I had so much fun. I especially enjoyed hanging out with my buddy Andrew and of course all the pretty girls. They hung out with me at the pool and in the hot tub!!!

I can't wait until Friday . . . . . . it's my birthday! I love seeing my birthday cake with the candles all lit and hearing everyone sing Happy Birthday!

My bike for school finally arrived. I get to test it out tomorrow and then after everything is set right I get to use it every day at school!

One more important bit of news . . . . we heard on Thanksgiving day that Shire filed ElapraseTM (idursulfase) with the FDA for the treatment of Hunter syndrome! This means that ERT is really on the way, we hope that within 6 months the FDA will approve this drug and that all MPS II patients can get treatment. You can read the whole press release here: http://www.shire.com/shire/NewsAndMedia/PressReleases/showShirePress.jsp?ref=493&tn=3&m1=8&m2=13

Until next time!
Kraig

Monday, October 24, 2005 10:57 AM CDT

Hello Friends and Family!

Mom is still recovering from our trip to NC last week. I don’t think she got very much sleep . . . . that’s probably because I didn’t either.

I had so much fun in NC. I loved playing with Andrew and Patrick and meeting my new friend Nathan. I called Nathan last week on his birthday; he just turned 10 years old. He had a fun day, but right after his birthday he got sick. Please say a prayer for him; I sure hope he is feeling better real soon.

I went on another field trip last week. My class went to the zoo. It was pretty much fun, but I was bummed that I didn’t get to ride the train. That is my favorite thing to do when I visit the zoo. Oh well, it was still better than sitting in school all day anyway.

Some people came over to our house on Friday and delivered this funny looking machine. Mom says I need to use it each night. I don’t mind the mask too much, but I like to turn and move in my bed at night and that silly mask gets in the way. I just don’t understand why I have to do all these silly things, Chelsey doesn’t have to use a machine when she sleeps . . . . . . . why do I?!?!?!?!?

Saturday we had family pictures taken. I’ll have mom post some of the pictures. After that we all went out to eat to celebrate October birthdays. I even saw Mr. Ragan in the restaurant; I haven’t seen him in a long time. I stopped and chatted with him for a couple of minutes. (Mr. Ragan is retired now, but he was the Principal at my old school).

One more week until Halloween. I don’t know if I’ll dress up, but I will go to the parade. That’s always fun, I especially like all the candy!

Until next time!
Kraig

p.s. Leslie, did you clean your dorm room yet?????????

Sunday, October 16, 2005 7:05 AM CDT

Hello Friends and Family!

I’ve been quite busy since my last update. Mom took me to the hospital in September for another sleep study. I hate those tests, I have trouble sleeping anyway and then they hook up all those wires and expect me to sleep in a strange place. Mom says I only slept about 2 hours that night. Mom keeps calling to see if those results are in, but there is no report yet.

I went on a field trip a couple of weeks ago with my class. We went to the Godfrey Corn Maize. It was a lot of fun, but for a while I didn’t think we were ever going to make it out of that maize. I’ve also been swimming every Friday, I really enjoy that! I LOVE the water . . . . just ask mom how wet she gets every night during bath time!?!?!?!?

Mom and I have been in Chapel Hill, NC all week. We are flying back home in just a couple of hours. We came out here for medical appointments with Dr. Meunzer and Dr. Escolar and her team at CDL (The Center for Developmental Learning). My best buddy Andrew and his mom have been out here all week, too. So we’ve been hanging out playing together all week. I’m sad that we’ll have to say good bye in a little while.

We went and picked up our friend Leslie on Thursday. I even got to see her dorm room at Wake Forest . . . . . Leslie, I hate to tell you this, but I think you need to clean your room. We spent the night with Leslie at her house . . . . guess what? Just about the time we were going to bed her brother told us that his pet snake was loose . . . . it didn’t really bother me, but I think that freaked out mom a little bit.

On Friday, we drove to Wilkesboro and I got to meet a new friend, Nathan. We had a blast playing together in a park and eating lunch. I’ll have mom post some pictures of my new friend. Nathan even gave me a new book. I looked through my book all the way back to Chapel Hill.

Leslie, Andrew, Patrick, Sharon, Mom and me all went out to supper on Friday night. We went to the Melting Pot to celebrate Patrick’s birthday (that was the second birthday party we had for Patrick, I LOVE birthday parties) . . . . . the best part was the chocolate. I had chocolate everywhere.

Yesterday we got to see even more friends . . . . . Lindsey and her family (MPS III), Madison and her family (MPS III), Maddy and her family (Maddy has MPS I and her family hosted the walk/run), Sam and his Family (MPS II, Angel Jordan's mom (MPS II), Angel Reese's mom (MPS I), Amy, Sissi and even Dr. Muenzer again (I hope I didn't forget anyone, there were so many people there). I always smile and laugh when I see him. We attended a walk/run fundraiser for the MPS Society. I even got a medal for Courage while we were there and Leslie helped me run the 100 yard dash.

It’s been a busy week! I can’t wait to get home and sleep in my own bed.

Don’t forget to watch Extreme Makeover Home Edition on ABC tonight! Camp Barnabas will be featured; it’s a two hour show tonight.
Camp Barnabas

Well, I guess that’s about all I have to say for now.

Love,
Kriaggy

I’ll leave a few links up in case anyone has missed them:
Intellingencer newspaper article 3-21-05

Klenke Bowl 2005 ~ photo story found on this page!

Sunday, August 28, 2005 10:34 AM CDT

Hello Friends and Family!

It’s time for another update! I keep telling mom I have a lot to say, but I need her help to type it out for me.

I have been sleeping much better these past few weeks. We are all really glad about that and sure hope this pattern continues. One of my doctors, you know the guy that deals with the brain . . . . help me out here mom, which guy is that, oh yeah, the neurologist. Anyway, after mom nagged him a bit he did prescribe a new medicine for me to take which helps with sleep. I started taking that and it did help. We were all real excited about that. BUT, there is always a but ya know. Mom took me to see another doctor that everyone was insisting I see. This guy deals with my breathing issues. I’m not so good at knowing the technical names of all these doctors I have to see, so mom help me out again . . . . Pulmonologist . . . . anyway, this doctor told mom that I really shouldn’t be taking that new medicine. He was worried it might cause me more breathing problems. So mom and dad are not giving me this medicine right now, but I have been able to rest pretty good without it. Mom says I get to sleep at the hospital one night this week; I’m just thrilled with this news, NOT!!!!! I hate those silly tests. They hook up all these crazy wires all over my head, stomach, chest, EVERY WHERE!!! You name it, and I probably will have a wire attached to it. Mom is hoping that I sleep so that they can get the information they need from me.

I started school last week, but I already missed a day of school. I’m supposed to have an assistant to help me out throughout the day, but when mom took me to school there wasn’t anyone there to help, so we told them I wouldn’t be back until this was all straightened out. The school did arrange for a substitute to be there the rest of the week, but I don’t know if they have a permanent person yet or not. I guess we’ll see what happens this week when the school week starts up again.

I was looking on the Camp Barnabas website the other day and saw that Ty from Extreme Makeover Home Edition made a visit with this crew. They build a new house for Paul and Cyndy. How cool is that!!!! Paul and Cyndy are awesome, they always let me come to their house and use their bathroom when I am at camp, isn’t that nice of them. I LOVE Camp Barnabas and can’t wait to go back next summer.

My friend Andrew from Ohio is working on plans for his walk/run for the MPS Society. I hope mom will drive me out there to see Andrew and all his buddies. I miss Andrew; I haven’t seen him since March.

After Andrew’s fund-raiser, mom and I are flying out to UNC again. I have to see more doctors, I get so tired of hospitals, but I know mom and dad know what is best for me. We hope to stay at the Ronald McDonald House in Chapel Hill for a couple of nights while we are there. We are also going to drive to see Leslie! YIPPEE!!!! I’m really excited about that, I get to see where she goes to school and meet her family. Leslie is going to drive back to Raleigh with us so that we can go to another MPS fund-raiser before we have to fly home. That should be fun, too. We will get to see Maddie, Sam and a bunch of our other friends.

Well, I guess that’s about all I have to say for now. I’ll try to be better about updating my Journal.

Love,
Kriaggy

I’ll leave a few links up in case anyone has missed them:
Intellingencer newspaper article 3-21-05

Klenke Bowl 2005 ~ photo story found on this page!

Saturday, July 16, 2005 8:53 AM CDT

Hello Friends and Family!

Okay, Leslie and Suzanne, this update is for you! (THTAT MEANS YOU HAVE TO SIGN THE GUESTBOOK!!!!!!) I’m sorry I haven’t updated in quite some time. As I told Suzanne last night, I think it’s because I’ve been so tired.

A lot has happened in the last 2 months. The school year came to an end with a couple of field trips, one of them to the zoo. Kraig of course really enjoyed the train ride and seeing the animals. Kraig is enjoying summer vacation. He really has a good time at day camp. He is able to swim 4 days a week and then every Friday he gets to go with the entire group on a field trip. Yesterday they went to Belleville to play laser tag and eat pizza. Kraig has been a bottomless pit when it comes to food lately and it’s my understanding he ate and ate and ate lots of pizza yesterday.

In June, our house was quite busy greeting several visitors. The first was our dear friend Leslie from over yonder in North Carolina. Chelsey and I picked up Leslie at the airport and then we were off to get Kraig from day camp. Leslie spent a couple of days with us before we had to drive her to Camp Barnabas. She volunteered as a CIA for 2 weeks. The first week she spent with kids who have physical disabilities and the second week she spent with kids who have developmental disabilities. Guess who her camper was that second week??? Give up??? Kraiggy!!!!!!!! I am so grateful to Leslie for giving up so much of her time to volunteer at camp. It was such a blessing for us to have her spend the week with Kraig. Brian and I were able to relax more knowing that Kraig was in good hands for the week. During Kraig’s week at camp Brian and I spent our time in Branson. It was nice and relaxing for us, we are so thankful to have that time together. Leslie put together a photo story from camp; she did an AWESOME job with it. If you would like to see the photo story, I have 2 links below where you view it. The first link is a much larger file, but it is better quality, the second link is a smaller version and will be easier for those of you with a slower internet connection to view it.

Link 1 This one is probably going to be the best bet for most of you to view the photo story, it is a large file about 8 MB, but if you have a faster internet connection, it would be good.

Link 2 This is a very small one; it will be best for those of you that have slow internet. The picture quality won't be great, so it will look better NOT on full screen.

After camp was over, Brian and I picked up our campers and headed home. Leslie was able to spend a few more days with us before she had to fly home. We really wanted to keep her for a while, but we figured her family was probably missing her as well, so we had to let her go.

Right before Leslie went home though, Aunt Rhonda and Uncle George came to visit from Indiana. We all had a great time together. They all picked the perfect time to visit! Kraig had just gotten his hot tub delivered just days before. So we waited for the sun to set and we all enjoyed the hot tub, although I think Kraig has more fun splashing everyone than he does relaxing in it.

Next, Chelsey and I made a trip up north, nearly to Rockford to meet her friend Helen. Last summer Chels stayed with Helen for a week, so this summer we got Helen for a week. Helen lives in Wisconsin and also has a sister dx with MPS III. We had a great time while Helen was here, Chels waited to have her birthday party so that Helen would be here. She had a few more friends over for a hot tub/slumber party. They really did have to sleep at this party. I guess I’m a mean mom, but just prior to the slumber party Kraig had an awful few days. Something was terribly wrong with him and we still have not figured it out. For 4 nights he slept very little and was extremely hyperactive and agitated all day and night. He just could not sit still. He was definitely on hyper-drive. Brian and I even considered taking him to the ER one night because we were so concerned about him. I’ve spoken to several of his doctors and so far all that anyone wants to do is another sleep study. Everyone at day camp was also very concerned about Kraig; he was just not himself that entire week. Thankfully, he has calmed down for now, but I fear this will happen again, as it has in the past.

Kraig also recently had a visit to dermatologist to fin out about that strange “rash” on his neck and chest area. It has some really long name and the doctor prescribed an antibiotic, although I have not been able to give him the meds yet. They come in capsule form and the pharmacists says they can not be broken open or given with milk products, so I’m not sure how I am going to get his in him yet.

I’ll leave a few links up in case anyone has missed them:
Intellingencer newspaper article 3-21-05
NASDAQ & NYC for “MPS Awareness Day” on February 25th PICTURES This trip was sponsored by TKT - Transkaryotic Therapies.
Klenke Bowl 2005 ~ photo story found on this page!

Until next time,
Kris and Kraiggy

Monday, May 2, 2005 8:44 AM CDT

Hello Friends and Family!

Gosh a month has gone by without even an update. Life has been busy as usual these last few weeks. Our wonderful Forum Friend, Leslie has helped us get the beautiful music in our journal . . . . . THANKS LESLIE!!!!

Kraig has been sleeping a bit better these last few weeks. (Now that I’ve written that, I better be prepared) He has taken a couple of falls at school these last few weeks, thankfully, he has not seriously injured himself, but we are looking at ways to prevent this from occurring so frequently. Kraig had a visit with the Cardiologist a week or so ago and now has an Event Recorder. He occasionally will get a rapid heart beat, so this Event Recorder will be used to record those times it happens. We transmit this information over the phone. Technology is amazing! He may need to take a new medication for this. Kraig also has a couple of appointments coming up in the next couple of weeks, ENT and Neurology.

The school year is almost over, only a couple more weeks of school. It seems to go by faster and faster each year. Kraig will be going to summer day camp through the YMCA again this summer and will also be going to Camp Barnabas for a week in June. He’s trying to talk Chelsey into going this summer, but she is still not sure yet. Our friend, Leslie, may be volunteering as a CIA this summer during Young Friends Week, the same week Kraig is scheduled to be there.

I started a job since our last update. I wasn’t really out looking, this just sort of fell in my lap. I am working part-time for the Meadowbrook Public Water District. So far, it fits pretty well into my schedule. I’m still able to get the kids off to school in the morning and I make it back home before Kraig gets off the school bus. I only have a 10 minute commute to work, much closer than Brian’s drive to and from work.

I traveled to Ann Arbor, MI a week ago to attend and ISMRD meeting and fund-raiser. Beth was able to go with me, so we had a fun little girl’s weekend, too. I met so many families and kids and I got to see my little buddy, Andrew! I have some pictures from the weekend, but haven’t downloaded them to my computer yet, once I do that, I’ll put a link to the photo album.

I guess that’s about it for now. I’ll leave a few links up in case anyone has missed them:
Intellingencer newspaper article 3-21-05
NASDAQ & NYC for “MPS Awareness Day” on February 25th PICTURES This trip was sponsored by TKT - Transkaryotic Therapies.
Klenke Bowl 2005 ~ photo story found on this page!

Until next time,
Kris and Kraiggy

Monday, March 28, 2005 10:05 AM CST

Hello Friends and Family!

It’s been a busy few weeks, as usual. There was another article about Kraig in one of our local newspapers. If you didn’t get the chance to read it, you can read it on-line: Intellingencer article 3-21-05 They did a pretty good job on the article.

Kraig is still having a lot of difficulty sleeping. He sleeps very little and even on nights when he doesn’t wake us up, I think he just toughs it out on his own. I feel so bad about that. I do sleep with him quite often, but there are times I really just need to be up in my own bed. His sinus area looks pretty swollen and he’s had a rash on and off. I called our pediatrician this morning and scheduled an appointment for Kraig this afternoon. I hope we can figure something out, he needs his rest. I’ve been keeping a sleep journal for a few weeks now, but not too much sleep gets recorded.

Last week we had a photographer from California here for a few days. She was taking pictures of Kraig for a profile another organization is doing. It was kind of like a “Day in the Life” sort of thing. I’ll be really interested to see how this turns out. It was tough to get Kraig to even crack a smile much last week, which is not like him; I think he just did not feel the best.

Over the weekend Brian’s parents had their farm and household sale. It was a tough day for them, change and Klenke’s just do not mix. The auction went really well, everything sold for a pretty fair price. There were two auctioneers going for most of the day and the auction still did not end until 3 PM (it started at 8:30 AM). They had a lot of stuff they wanted to get rid of (well, I don’t know if they really wanted to get rid of it, but they did, it wont all fit at the new place). I did get 2 quilts that were made by Brian’s grandma. I also got 2 old crocks and an old milk jug. Brian spent most of the day over there yesterday helping those people who came to pick up their equipment they bought the day before.

Well, it’s back to school today for the kids. They had the week off last week. Chels was not too thrilled today, but I told her there are only about 40 some odd days left before summer vacation. I’m going to leave up the link to our NASDAQ pictures: NASDAQ & NYC for “MPS Awareness Day” on February 25th! This trip was sponsored by TKT - Transkaryotic Therapies. I’m also going to leave up the link to the photo story from Klenke Bowl 2005! At the top of this page you’ll see where to click to view the photo story. Make sure you turn up your volume; you’ll need Windows Media Player to view the story.

Until next time,
Kris and Kraiggy

Tuesday, March 15, 2005 10:23 AM CST

Hello Friends and Family!

It’s been a busy few weeks and I’m just now finding a few minutes to update Kraiggy’s Journal. Since our last update we went to NYC to celebrate “National MPS Awareness Day” by attending the NASDAQ Market Open on Friday, February 25th. It was quite an honor to be in New York for this very special day. Kraig really enjoys traveling, so he had a lot of fun. It was a bit of a challenge getting him around in the city. The sidewalks are quite crowded, especially right in Times Square where we were, and every moves at such a fast pace. He spent most of the time in his stroller; it was just safer to have him in there. I have some pictures from our trip that you can find here, NASDAQ & NYC for “MPS Awareness Day” on February 25th! Chelsey really wanted to visit the American Girl Store, so she was able to go down there with Maddie and her mom Amy, but we also walked back down there the next day. We stopped by Rockefeller Center on Saturday morning to see the taping of the Today Show and check out the NBC Experience. There just wasn’t enough time to see everything that we would have liked to see, but we did have a great time. We are very grateful to TKT - Transkaryotic Therapies for everything they did to make this event happen! Our local NBC affiliate met us at the airport before we flew out and interviewed us, this story did run on February 25th, however, I can not find a link on line to view the story. I do have a copy of this if anyone would like to see it, you’ll have to let me know. Our local newspaper ran a story on that day as well.

As soon as we returned from NYC, it was back into the Klenke Bowl 2005 planning mode. This event turned out wonderful. We had around 100 bowlers and lots of spectators. 8 MPS Families attended, representing 6 different states. I am so thankful that these families took time from their busy schedules to travel to Edwardsville for this fundraiser. We are very proud to announce that we took in just over $10,000!!!! This money will all go to the National MPS Society to support MPS and ML Families and a potion will be designated for research. This could not have been possible without all the great volunteer support we had and all the people that came and brought in donations. I’m so thankful to my family and friends for providing so much help, the main volunteer support came from Brian, Chelsey, my SIL Denise, my Mom & Dad, Judy W, Aunt Jane, Tami and Suzanne who arranged for the Sanford Brown Massage Therapy Students to be there. I also had lots of help that day in addition to those already mentioned, Beth W, Beth H, my SIL Kathy, my MIL and Janet. Once again this year, Mark Sands and his Lab from Wash U in St. Louis grabbed the trophy for top donations collected by a group, they brought in over $900! Jennifer Deskins won the trophy for the top donations collected by an individual. I had the pleasure of meeting Jennifer and her family that weekend. Jennifer’s adorable son, Tyler, was just diagnosed with MPS I (Hurler Syndrome) in January. Tyler will be starting transplant very soon; in the mean time he is getting weekly ERT infusions. Also in attendance was Kraig’s best buddy, Andrew! Andrew and Kraiggy are UNC buddies, every year for the Natural History Study we get to see them in North Carolina. Andrew brought quite a few people with him, including Aunt Barbara; they drove all the way from Ohio. I was quite surprised to see “Queen” Jess and Brian; I didn’t think they would be able to make the trip. Jess and Brian are MPS I parents, their beautiful daughter, Kaity Bug, gained her angel wings this past August. They are very special people and I am so glad they were able to come. Aunt Rhonda and Uncle George also made the trip. Technically they are ^^Angel Kaity’s^^ aunt and uncle, but they have also been adopted by quite a few other kids. I’m so happy they were able to come out, too. The Rapplean Family crossed the river to come bowl a few games. Nick is around Kraig’s age, but is diagnosed with MPS III (Sanfilippo Syndrome). Nick looked pretty happy when he got his very own trophy. The Merrell Family was able to come for a little bit, despite the terrible cold/flu that Eric had. Sean and Cody are both diagnosed with MPS I H-S (Hurler-Scheie Syndrome). The Waddel Family drove up all the way from Mississippi. Caleb is diagnosed with MPS I (Hurler Syndrome) and boy is he a little talker. What an adorable little guy, he stole the heart of anyone he came in contact with. Last but certainly not least, The Athy Family from Belleville joined in on the fun. Aaron is the sweetest little guy you’ll ever meet. He is diagnosed with MPS I (Hurler Syndrome). Trisha, Aaron’s mom, spent quite a bit of time gathering donations for the silent auction and rounding up lots of extended family and friends to come out and support the fund-raiser, THANK YOU TRISHA! I have the sweetest picture of Aaron and Caleb sitting outside of the bowling alley. You can view a photo story by clicking here, Klenke Bowl 2005! At the top of this page you’ll see where to click to view the photo story. Thank you Leslie for helping to put together all these pictures into such a beautiful photo story. Make sure you turn up your volume; you’ll need Windows Media Player to view the story.

I can’t talk about Klenke Bowl without mentioning the many other MPS/ML Families that helped make this event a success. The Bennett Family from California (MPS III) sent in several donations for our silent auction. The Dummann Family from Alaska (MPS III) sponsored 3 lanes and sent in several silver coins for the silent auction. Alice Martin from Georgia (MPS/ML Friend and BOD member) sent in a donation. The Langford Family from South Carolina (MPS III) sponsored a lane. Josh and Jake’s Aunt Nancy sent in a donation as well. Nancy is from Oregon and Josh and Jake are dx with MPS II and live in Washington State. Blanca and Frankie (MPS II) had planned to attend the bowl-a-thon, but Frank got sick just a few days before and could not make the trip. They were still able to get out and collect donations for the fund-raiser. I hope I’m not leaving anyone out of this list. I appreciate this support so much. MPS and ML Families are absolutely the best people you will ever meet in this world!!!!!!!

This update is getting quite lengthy. I can’t end without mentioning that Kraig is doing pretty well, but he is still having a lot of difficulty with sleep issues. It is so frustrating for all of us. We still can’t figure out why he has such trouble. Sunday night he may have slept an hour the entire night. He did sleep better last night, so I hope that trend continues for him. The poor guy needs to get good quality sleep. Next week is spring break, so I am looking forward to spending some more time with the kids. Chelsey wants to see the movie Ice Princess next week, so I’m sure we’ll fit that in one day. Tuesday and Wednesday we have a photographer from California coming over to take some pictures of Kraig and the rest of our family for a profile; this will be used by another LSD group for various projects.

I guess that’s about it for now!

Until next time,
Kris and Kraiggy

Wednesday, February 23, 2005 10:24 AM CST

MEDIA ALERT!!!!!!!

For Kraig’s St. Louis area fans!!!!!!!!!!

Kelly Jackson from News Channel 5 will be meeting us at the airport tomorrow morning for an interview before we leave for NYC. I do not know when the story will air, I’m guessing Thursday evening. Hopefully, someone will tape it so that we can watch it when we return home. I believe the Alton Telegraph will be running a story about Kraig at the NASDAQ as well as covering a story for our upcoming fund-raiser on March 5th!

p.s. They are calling for 4-6 inches of snow in NYC and it’s starting to snow here tonight. I sure hope the weather cooperates with us.

Hello Friends and Family!

I thought I would update before we head out to NYC tomorrow. Kraig is doing okay. He still struggles with sleep. I sure wish I knew what we could do for him. It’s very frustrating to see him suffering and not know what to do to help him

Despite all of this, he is still the happy go lucky kid we all know and love. He almost always has a smile on his face and that little laugh of his just melts your heart. We are looking forward to our trip to NYC, hopefully we will be able to take in a few sights before we head back home on Saturday.

Don’t forget about Klenke Bowl 2005! I have the link to our web-site above; I have been updating the silent auction list as items have come in. There are several MPS Families that will be in attendance this year. Please be sure to mark your calendar and come out and help us support the National MPS Society on Saturday, March 5th!!!!!!!

Until next time,
Kris and Kraiggy

p.s. In case anyone is interested in seeing what it was like for Kraig to have the pressure monitor in, here are just a couple of pictures: just following surgery, he had just been settled into his room, he has the PH probe in as well

ICP monitoring

watching TV during the monitoring

sitting in the chair during monitoring

I’ll keep the links to our Florida trip photo albums in here in case someone has not had the opportunity to view them yet (hopefully they won’t take too long to download):
ALBUM #1
ALBUM #2 (the larger one)

How will Kraig be spending the day?

Kraig has been invited along with his family and a few other members of the National MPS Society to ring the NASDAQ Stock Market opening bell in New York. This exciting opportunity was presented to us by our friends at Transkaryotic Therapies. Transkaryotic Therapies, Inc. - TKT, is a biopharmaceutical company with a major focus on developing products for the treatment of rare diseases and is developing products for MPS II patients. National MPS Awareness Day is February 25th. On Wednesday, Feb 16, 2005 the U.S. Senate passed a unanimous resolution, officially making February 25 National MPS Awareness Day. The day will be set aside annually to remember those who have lost their battles and those who struggle daily with MPS and ML.

You can watch the market open live on webcam, simply click the following link: Nasdaq web-site
On the Nasdaq web-site, scroll down towards the bottom of the page and read the instructions under MarketSite Live Webcam. You will need Windows Media Player, if you do not have it installed on your computer; there is instruction on how to download it. Plan to download the webcam by 8:20 AM CST/9:20 AM EST or earlier; the market open will be over with by 8:30 AM CST/9:30 AM EST. The Market Opening can also be viewed on CNBC "Squawk Box" where it is shown live. Check your local listings for the station in your area. Later in the day you can check the site again for still photos of the event.

Please remember to wear your purple Awareness ribbon, Courage wrist band or just wear purple in honor of all of the MPS/ML children who are battling these diseases and those special ^^Angels^^ who have already fought the battle and are now resting safely in the arms of Jesus.

Friday, February 11, 2005 7:19 PM CST

Hello Friends and Family!

It’s been a couple of weeks since I’ve updated Kraig’s journal, so I thought I better take the time. We really don’t have any definite answers from all the recent testing that Kraig has had done. I called UNC this week to try and reach Dr. Muenzer and am waiting to hear back from him. I know that he has not received Kraig’s CSF sample, but I am told they think they know where it is. This wouldn’t be something that is easy to get again if it’s lost, so hopefully it does turn up.

The sleep study report was not very complete and I am waiting to talk to UNC about it. Kraig’s sleep patterns are really hard to deal with. He had several bad nights this last week. It’s so hard to have to get up numerous times through the night, worse yet; I don’t know what to do for Kraig to make this better for him. I am starting to keep a sleep journal for him, just logging in information about his day, what he eats, toileting information, mood and sleep patterns. Hopefully this will eventually help us establish a pattern or some clues as to why he has such trouble. Then maybe we can do something to help him.

I also need to talk with Dr. Muenzer about the reflux issues. The ph probe showed that he is refluxing; however, Kraig’s GI here doesn’t seem to want to prescribe meds for this. We think this may be part of the sleep difficulty, we think he is refluxing at night and it’s keeping him up or waking him up.

I’ve been hard at work preparing for our upcoming fund-raiser. I have the link to our web-site above; I have been updating the silent auction list as items have come in. There are several MPS Families that will be in attendance this year. Please be sure to mark your calendar and come out and help us support the National MPS Society on Saturday, March 5th!!!!!!!

Please remember to keep Lindsey in your prayers. Here is the link to her journal, please stop by and offer her and her family some words of encouragement: LINDSEY’S JOURNAL

Until next time,
Kris and Kraiggy

p.s. In case anyone is interested in seeing what it was like for Kraig to have the pressure monitor in, here are just a couple of pictures: just following surgery, he had just been settled into his room, he has the PH probe in as well

ICP monitoring

watching TV during the monitoring

sitting in the chair during monitoring

I’ll keep the links to our Florida trip photo albums in here in case someone has not had the opportunity to view them yet (hopefully they won’t take too long to download):
ALBUM #1
ALBUM #2 (the larger one)

You can watch the market open live on webcam, simply click the following link: Nasdaq web-site
On the Nasdaq web-site, scroll down towards the bottom of the page and read the instructions under MarketSite Live Webcam. You will need Windows Media Player, if you do not have it installed on your computer; there is instruction on how to download it. Plan to download the webcam by 8:20 AM CST/9:20 AM EST; the market open will be over with by 8:30 AM CST/9:30 AM EST.

Later in the day you can check the site again for still photos of the event.

Tuesday, January 25, 2005 7:38 AM CST

Hello Friends and Family!

The doctors have been slow to give us answers on many of the tests that Kraig has recently had done. I hate playing the waiting game. I ought to be really good at it by now, seems we have to play this game pretty frequently. Kraig’s incision is healing up nicely. I tried to get someone from UNC to remove the stitches while we were down there for testing, but everyone was so busy. I did, however, manage to get a removal kit from them. Sharon, Andrew’s mom, was going to remove them for Kraig while we were in NC, but time slipped away, so Brian and I ended up removing them ourselves. Then we gave Kraig a snazzy hair cut, we needed to even him out since they shaved that big patch to do the surgery.

Aunt Dee Dee traveled to UNC with us last week. We were stuck on the runway in St. Louis for an hour and a half because it started snowing like crazy right before take off. We finally got to leave and the rest of the flight was uneventful until we landed at RDU. It was raining and for some reason they couldn’t get the walkway up to the plane, that meant we all had to walk down stairs, not an easy task for Kraig. We had to wait until everyone got off the plane and then with assistance we were able to get Kraig off. He is such a good boy when we travel, he is happy if he is sitting next to the window so he can look out and see what is going on. He didn’t want to sleep very good while were away, he nearly gave me a heart attack the first night. I tried lying with him, but by 3 AM I just couldn’t take it any more, so I left him in the bedroom with the bed to himself and I went out to the couch to sleep, at 4:30 AM I heard a loud boom. I got up yelling “Kraig, Kraig” and found him on the floor. He tried to get up and find me, but it was too dark in the room and he fell. Thankfully, he was not hurt. We did manage to scare Aunt Dee Dee as well; she heard all the noise and got up to see what was going on, too.

There is not really much else to report right now. We are just waiting on these reports to come back in. Hopefully there is something we can do for Kraig to help him sleep better.

We are working on some exciting plans for MPS Day, which is coming up on Friday, February 25th. Check back soon to see what Kraig will be doing on this special day. I’ve also been hard at work preparing for our upcoming fund-raiser. I have the link to our web-site above. There are several MPS Families that will be in attendance this year. Please mark you calendar and come out and help us support the National MPS Society on Saturday, March 5th!!!!!!!

Please remember to keep Lindsey in your prayers. Here is the link to her journal, please stop by and offer her and her family some words of encouragement: LINDSEY’S JOURNAL

Until next time,
Kris and Kraiggy

p.s. In case anyone is interested in seeing what it was like for Kraig to have the pressure monitor in, here are just a couple of pictures: just following surgery, he had just been settled into his room, he has the PH probe in as well

ICP monitoring

watching TV during the monitoring

sitting in the chair during monitoring

I’ll keep the links to our Florida trip photo albums in here in case someone has not had the opportunity to view them yet (hopefully they won’t take too long to download):
ALBUM #1
ALBUM #2 (the larger one)

How will Kraig be spending the day?

Kraig has been invited with his family to travel to New York City to ring the bell for the Nasdaq market opening on Friday, February 25, 2005 in honor of MPS Awareness Day. Transkaryotic Therapies, Inc.(TKT), a biopharmaceutical company with a major focus on developing products for the treatment of rare diseases and is developing products for MPS II patients, has made the arrangements for several members of the National MPS Society and 4 representatives from their company to attend the Nasdaq market opening. The Legislative Committee of the National MPS Society has been working with members of congress who will vote on a Congressional Resolution to make February 25 “National MPS Awareness Day”.

You can watch the market open live on webcam, simply click the following link: Nasdaq web-site
On the Nasdaq web-site, scroll down towards the bottom of the page and read the instructions under MarketSite Live Webcam. You will need Windows Media Player, if you do not have it installed on your computer, there are instruction on how to download it. Plan to download the webcam by 8:20 AM CST/9:20 AM EST, the market open will be over with by 8:30 AM CST/9:30 AM EST.

Later in the day you can check the site again for still photos of the event.

Friday, January 7, 2005 2:51 PM CST

Hello Friends and Family!

Kraig is finally home! Yeah, we are excited about that; he was released right from the PICU. I am still waiting to hear from the GI about the PH probe and if they found anything. His ICP remained within the normal limits while he was being monitored, so he will not need a shunt. We are happy about that; a shunt usually comes with its own set of complications over time. Dr. Muenzer did request a sample of Kraig’s CSF, so they drained off 10cc’s before they removed the monitor. The neuro-surgeon said that Kraig can return to school on Monday and he is clear to fly next week. That means our trip to UNC is on for next week. We will fly out on Thursday and return home on Saturday. Aunt Dee Dee is traveling with us this time.

Earlier this week I went down to use the computer, while I was there a man came and sat next to me. As soon as he sat down, he looked over at me funny; he was searching for the name on my patient badge. I had no idea who he was, but after a few seconds we started talking. He saw that I had the MPS Forum up on my screen and that was exactly where he was headed, to read the forum. Turns out he is from Nebraska and his two boys, Robbie and JR, are in the ERT clinical trial and receiving treatment at SLCH. We talked for quite sometime before I had to get back to Kraig’s room. Later in the day when Linda, our genetic counselor, stopped by to see Kraig, she walked me up to the CRC (Clinical Research Center) so that I could meet Robbie. He was getting his first (for sure) real dose of I2S; it was the first infusion for the extension phase of the ERT trial. Later in the evening while Brian and I went down to get a bite to eat for supper; we saw the entire family before they headed back to their hotel room. Yesterday I went back up to the CRC to see JR getting his infusion and talk with his mom, Kim. They are a really great family, I’m glad that I had the opportunity to meet them.

I’m really tired and so is Kraig, so we will keep this update short and sweet.

Please remember to keep Lindsey in your prayers. Here is the link to her journal, please stop by and offer her and her family some words of encouragement: LINDSEY’S JOURNAL

Until next time,
Kris and Kraiggy

p.s. I thought it was kind of weird that Kraig was in the exact same room as he was just a few months ago when he went through his last surgery. I guess PICU room 3 really is his room. In case anyone is interested in seeing what it was like for Kraig to have the pressure monitor in, here are just a couple of pictures:
just following surgery, he had just been settled into his room, he has the PH probe in as well
ICP monitoring
watching TV during the monitoring
sitting in the chair during monitoring

I’ll keep the links to our Florida trip photo albums in here in case someone has not had the opportunity to view them yet (hopefully they won’t take too long to download):
ALBUM #1
ALBUM #2 (the larger one)

Monday, January 3, 2005 10:52 PM CST

THURSDAY UPDATE: Sorry I haven't been able to update until now. It's hard to communicate when Kraig is in PICU especially when I don't have anyone to come in and sit with Kraig so I can step out for a few minutes. Anyway, Kraig has tolerated all of this extremely well, I am very proud of him! He has the PH probe out, that was removed yesterday, but I don't have any details on what they found. He didn't eat but maybe 2 bites of pudding the entire time he had the probe in, he was gagging constantly, I think the probe really bothered him. So I don't know what they will find. He did have an endoscopy done as well, the GI said his esophagus looks pretty good. Kraig's ICP has been pretty low the entire time the monitor has been in. I certainly don't want to have to deal with a shunt unless absolutely necessary, but I am a bit surprised at his numbers. Most of the time it hoovers between 5 - 12. Sometimes the number jumps up, but not for an extended time period. He is only being monitored while laying down on his back. I know he is very uncomfortable, he is a tummy sleeper and with all the wires and stuff he just can't move a whole lot. This morning I did get him up sitting in the chair to feed him breakfast, I think he liked that change. Dr. Smyth has talked to Dr. Muenzer about Kraig's ICP numbers and Dr. Muenzer has asked if they can drain off about 10cc's of CSF before they remove the catheter, he wants it for research. Dr. Martin also stopped in yesterday afternoon as well as our ped. Dr. Epstein, so Kraig is being well cared for in the PICU and closely monitored.

PRAYER UPDATE: Please keep our friend Lindsey and her family in your prayers. She had been hospitalized for quite sometime and has now finally been release and is at home, but is still very sick. We have been following Lindsey’s journal for quite sometime and finally had the opportunity to meet her family in Florida, they are an amazing family. You can access her journal here: LINDSEY’S JOURNAL Also keep our friend Noah in your prayers. I had the opportunity to meet this amazing little guy and his family a few years ago at an MPS Conference in California.

Hello Friends and Family!

I’ll keep the links to our Florida trip photo albums in here in case someone was not had the opportunity to view them yet (hopefully they wont take too long to download):
ALBUM #1
ALBUM #2 (the larger one)

We have to have Kraig at the hospital tomorrow morning at 9:45 AM. I am not looking forward to this procedure. Kraig has been so happy these last few weeks, it’s so hard to put him through more testing. I just pray that we get clear answers from these tests and that we will know what to do next. I will be really surprised if his pressures are within normal range, but I will be so happy if he does not need a shunt.

I’m sure he would enjoy getting cards while he is in the hospital. You can send free e-cards directly from the St. Louis Children’s Hospital web-site. It’s pretty easy to do, just click this link: ST LOUIS CHILDREN’S HOSPITAL E-CARDS

I’ll try to update when I can. The hospital does have a computer, but it’s not on the PICU floor and there are only certain hours you can use the computer.

Until next time,
Kris and Kraiggy

Thursday, December 30, 2004 12:11 AM CST

PRAYER UPDATE: Please keep our friend Lindsey and her family in your prayers. She had been hospitalized for quite sometime and has now finally been release and is at home, but is still very sick. We have been following Lindsey’s journal for quite sometime and finally had the opportunity to meet her family in Florida, they are an amazing family. You can access her journal here: LINDSEY’S JOURNAL Also keep our friend Noah in your prayers. I had the opportunity to meet this amazing little guy and his family a few years ago at an MPS Conference in California.

Hello Friends and Family!

We made it back from our trip to Florida and we had such a good time! The first part of our trip was very busy with meetings and the conference, but we did get to spend a few extra days in Florida after the conference. I was so honored to receive the “Outstanding Membership Achievement Award” at the banquet on Sunday evening. I was very surprised, but terrified to go up in front of everyone to accept the award. Barb graciously held my hand and helped me through that part. We miss seeing our friends/family. It was so wonderful to be able to spend several days with other MPS/ML families, I wish we could see everyone more often. We also had the opportunity to meet several new families, many we had “talked” with on-line but never got to meet until the conference.

I have created an on-line photo album; you can see pictures from our trip here (hopefully they wont take too long to download):
ALBUM #1
ALBUM #2 (the larger one)

We discovered that Kraig really enjoys 3D and 4D movies. We saw several during our visits to all the different theme parks. The first 3D show we saw was “It’s Tough to Be a Bug” at Disney’s Animal Kingdom. It is really a cute show. We didn’t think that Kraig would keep those cute little 3D bug glasses on, but he did. Not only that, but he was reaching out during the show trying to catch those quick little bugs. It was so much fun watching him. Brian and I were laughing so hard we both had tears in our eyes. Kraig also had that same reaction when we saw Shrek in 4D at Universal Studios. We are so glad we had the opportunity to visit so many of the theme parks, we had really wanted to go to Universal, but did not have tickets for that park and didn’t want to buy them because they are so expensive. However, we ran into the Edwards family right after the conference the day we visited Animal Kingdom. TJ and his family were on his Make-A-Wish trip and only had one more day left; they knew they didn’t have time to go to Universal so they offered their Universal Studios tickets to us. We are so thankful they did. Kraig had a blast there! The first thing we did was go and see the Barney show, even better, they asked if Kraig would like to stay after the show and personally meet Barney. How could we refuse an offer like that?!?!?! Not only did Kraig get to personally meet Barney, but BJ and Baby Bop came out to visit as well. We got some great pictures of Kraig with his very best friends!

Our flight home on Christmas Eve was delayed by several hours. It was a bit boring sitting in the airport, plus we were so tired by that point. We finally made it home around 1 AM on Christmas morning.

The biggest part of our Christmas was our trip to Florida, but we still had a very nice Christmas once we got home. We spent Christmas day at Steve and Dee’s house. Just as we were all sitting down to enjoy our supper together, Steve got a fire call. Thankfully, it didn’t take real long. We normally celebrate Christmas with the Klenke’s on Christmas Eve, but since we were traveling on that day, we didn’t get to celebrate together until Monday evening.

Kraig is still scheduled to have the pressure monitoring done next Tuesday, January 4th. We are all pretty nervous about this procedure and would appreciate your prayers. Kraig’s doctor says he will have 72 hours of monitoring in the PICU. He will most likely have a PH Probe done at the same time. This will be done to see how often he is refluxing and if medication is necessary. Kraig had an appointment yesterday with Dr. Martin, he went ahead and ordered the necessary pre-op blood work and will be talking personally with the anesthesiologist who will be working with Kraig next week. We discussed the procedure a little more and he said that he will be coming up to visit Kraig while we are in the PICU.

Until next time,
Kris and Kraiggy

Friday, December 10, 2004 4:27 PM CST

Dear Friends and Family!

Kraig had a great birthday and got lots of great presents. The biggest treat of the day . . . . . hold on to your hats . . . he said "HAPPY BIRTHDAY" as plain as day. I had been working on him all day, singing and trying to get him to repeat, but he would get as far as "ha" and then start laughing at me. I had his cake out and we were getting ready to light the candles and sing and he just blurted out the words "Happy Birthday". It's been a long time since I've heard him say that. Unfortunately, we did not get that on video, but the memory of that will be eched in my memory for a long time.

We've been quite busy getting ready for next week . . . our big trip to Disney. It's exciting and we just can't wait to get there.

Kraig got his new wheels on Wednesday. I've posted a picture of him sitting in his new chair above. It looks really comfy, I guess it will get a real test on our trip next week.

Kraig has not been feeling so well the last day or so. I think his throat is really bothering him. I did send him to school this morning, but came in at noon to check on him before his swim time. He just looked like he didn't feel very well, so I brought him home. His doctor has called in an antibiotic, hopefully this will knock out whatever he may be coming down with. He needs to be feeling well for our trip.

Until next time!
Kris and Kraiggy

Friday, December 3, 2004 7:47 AM CST

Hello Friends and Family!

I know I just updated yesterday, but I couldn’t let today pass without wishing Kraiggy a HAPPY BIRTHDAY!!! I can’t believe you are 13 years old. I clearing remember what I was doing 13 years ago today. You were a bit stubborn and after 24 hours I was more than ready to see your beautiful little face. You sure shocked daddy and I when we first saw that beautiful red hair.

We love you buddy and we are so blessed to have you as our son!

Love,
Mom and Dad
Oh yes, we can’t forget Chelsey, too

Thursday, December 2, 2004 8:13 AM CST

Hello Friends and Family!

It’s been a few weeks since I have updated; it’s just been crazy around our house lately. We have made a decision about the bolt/pressure monitor and it has been scheduled. Kraig will have this procedure done on January 4, 2005. It will require general anesthesia and a surgical procedure to put this in place and then he will be in PICU for 72 hours for the monitoring. I need to talk with the physician assistant to get a little more details on exactly what will happen yet. We had thought about trying to do the monitoring before our Florida trip, but that just did not work out with our schedule or the doctor’s schedule, it would have put the procedure too close to the time we leave so we decided it would be best to wait until we return home.

Kraig also had an appointment with the GI doc last week to discuss reflux issues. He wants to do a PH probe at the same time Kraig is in for the bolt/pressure monitor. I’m not so sure we will allow this to happen, we need to discuss this further and talk with Dr. Muenzer first.

We are all very excited about our upcoming trip to Florida. We are finalizing plans and trying to get everything done for Christmas before we leave. I’m very excited about all of the friends and family that we will see while we are in Florida.

Kraig’s new stroller is in at United, but it has not yet been delivered. They are schedule to bring it out and “fit” Kraig next Wednesday. I’m so glad it has come in before our trip; it will make Kraig much more comfortable during out stay in Florida.

Until next time!
Kris and Kraiggy

Wednesday, November 17, 2004 11:32 AM CST

Hello Friends and Family!

I’ve waited to update because we are still sort of in limbo with this whole hydrocephalus issue. Kraig did see the neurosurgeon last week at St. Louis Children’s Hospital. He does not feel that Kraig’s films are consistent with hydrocephalus but that he has atrophy. We do not agree with him, I’m sure Kraig may have some atrophy, but Dr. Muenzer feels certain that Kraig does have communicating hydrocephalus and that he would benefit from a shunt.

Long story short, the neurosurgeon said that he was willing to discuss this with Dr. Muenzer, so I gave him his card with the contact information. Our neurosurgeon also recommended that we get a second opinion from another neurosurgeon; in fact, he mentioned one of his partners. First of all, we have not been happy with our experiences with either of his partners, that is why we choose to see him and secondly, I think getting an opinion from one of his partners would be a total waste of money. I’m sure they would both talk about Kraig’s case and probably agree, which would mean no pressure monitoring or shunting for Kraig. We left the office with the hopes that the neurosurgeon would follow through and speak with Dr. Muenzer.

Later last week UNC called and I was informed that this conversation took place and that our neurosurgeon was probably swayed in to thinking it might be best to go ahead and do the pressure monitoring, but I never heard back last week from our doctor here. I called our NS’s office Monday morning and then finally this morning the NS called me back. So as it stands now, Brian and I need to make a decision on when to do the pressure monitoring, our doctor here has been convinced that he could be wrong and that pressure monitoring would be the best way to determine Kraig’s pressures. It will be done in ICU and our NS feels that they need 72 HOURS of monitoring to get accurate readings. WOW, this is going to be really tough to do. But I definitely see where the monitoring is the better way to go versus just doing an LP. The NS said that if the pressures are high and we feel that Kraig needs shunt placement that probably the safest thing to do is a separate hospitalization for that. He would like to pull the monitor out, let Kraig heal for at least a week and then do the surgery. He says this will be the best way to proceed with shunt placement without so much fear of infection. Now our dilemma, we leave for Florida in less than 4 weeks. Do we go forward with the monitoring before our trip and then shunting after we return (if his pressures are high), do we try to do everything before we go, do we do the monitoring now and then surgery after we return home. There is lots to think about over the next few weeks. We’ve also got Thanksgiving and Kraig’s birthday in 2 weeks to throw in there, too.

Please keep Kraig in your prayers as we figure out the best thing to do.

Until next time!
Kris and Kraiggy

Wednesday, November 3, 2004 7:41 PM CST

Hello Friends and Family!

Kraig is back to having sleep difficulties again **sigh** that’s such an on again off again thing all the time. It hasn’t been every night, but several nights he’s been up in the middle of the night. We did get back more of his test results for our week at UNC. The abdominal MRI showed that his gastro esophageal reflux is a little worse than it was. I talked to his Pediatrician about this and he suggested calling his GI to schedule an appointment, so we see Dr. Rothbaum on the 23rd. The abdominal MRI also showed lung atelectasis in both lung bases, but I don’t think there is a whole lot we can do about that.

UNC is sending me all those medical reports and they are sending a CD-ROM of the brain MRI to the neurosurgeon. Kraig has an appointment with Dr. Smyth on Monday. Just prior to that appointment we are meeting with genetics to go over a game plan in dealing with this communicating hydrocephalus issues. I know our Pediatrician has also talked with Dr. Smyth, hopefully, this will show him that we do have a good support system in place already here in St. Louis.

The next several weeks will be quite busy with all of Kraig’s doctor appointments. I’m sure we will also be doing the continuous pressure monitoring and/or shunt surgery, too. Also in less than 6 weeks we have plans to go to the 30th Anniversary celebration of the National MPS Society in Orlando, Florida. I just can not wait to get there; it will be a really great time. Then we have tentatively set up our return visit to UNC for January 13 – 15th. Plenty of stuff to keep us busy, not to mention the Holiday’s are quickly approaching.

Chelsey walked in the Halloween parade in Edwardsville on Sunday. I took Kraig to watch the parade, he really enjoyed that. Several kids that were in the parade spotted him and yelled hi to him, one girl even came over to him and gave him her lighted necklace, that was really nice of her. Kraig is enjoying his Wednesday sessions at SIUE with all the college kids. They are all so good with him, he has a lot of fun playing all the games and “socializing”.

Well I guess that’s about it for this week.

Until next time!
Kris and Kraiggy

Wednesday, October 27, 2004 9:56 AM CDT

Hello Friends and Family!

Kraig and I made it home safely from UNC-Chapel Hill. Kraig really enjoyed the plane ride, as he usually does. He really likes looking out the window when we take off and land.

I’ve been busy since we returned home setting up doctor appointments. I also got a nebulizer for him to use at home. He is still having trouble with his reactive airway since he was intubated last week, the nebulizer treatments seem to help him breathe better. I talked to our genetic counselor here in St. Louis on Monday and together we are working on a plan for this shunt issue. Dr. Martin (our genetic doc here) and Dr. Muenzer (our genetic doc at UNC) are both in Toronto this week for genetics meetings. I was able to catch Dr. Martin before he left on Monday, so hopefully he will have a chance to talk with Dr. Muenzer about Kraig’s case while he is up there. I did get an appointment with our neuro-surgeon at SLCH; I was able to get Kraig in on November 8th. I’m hoping we will not have to do the continuous pressure monitoring on Kraig. I talked to my friend Amy, all 3 of her children have a VP shunt and one of her kids has had to have the continuous pressure monitoring, and is sure doesn’t sound like fun at all. I would like Brian to attend this appointment with us on the 8th, so hopefully he will be able to get off work to do that.

Good news from CDL! I don’t have the full report from them yet, that will take a few weeks, but overall Kraig’s scores have remained consistent for the last 2 years. This means he is still learning. The testing done at CDL is so important and has been very beneficial for us. We use the report to help form some of Kraig’s goals and objectives for his IEP and it has also been helpful in determining if Kraig has communicating hydrocephalus. Since his MRI shows an increase in his ventricle size, but his cognitive function has remained the same, that tells us that the change in the MRI is not just due to atrophy, but probably communicating hydrocephalus.

I’m still waiting to hear if our insurance is going to approve Kraig’s new stroller. I keep calling United Seating, I really want this stroller before we go to Orlando for the MPS Conference in December. Kraig’s current stroller is showing it’s age and it also has a sling type seat, not good for his hips. I also need to work on this whole shunt issue from the insurance stand point. Kraig’s secondary insurance does not normally cover this type of thing, but if I can get Dr. Martin to make his recommendation then they will probably cover it, that is if we choose to do treatment/surgery here in St. Louis.

I guess that’s about it for now. I’m feeling better today because Kraig slept the full night last night . . . . . finally!!!!!!!

Until next time!
Kris and Kraiggy

Friday, October 22, 2004 9:17 PM CDT

Dear Friends and Family!

Just wanted to update once more from Chapel Hill . . . . . . Kraig and I return home tomorrow. We are both wore out and pretty tired. We did have a great time this week spending time with Andrew, Sharon and Aunt Barbara, they are like our family. We also had the opportunity to visit with Sam twice, another child dx with MPS II and his family and also Carrie, her son had MPS II and just passed away 1 month ago at the age of 23 months. It was wonderful to be able to spend some time with all of these families. There is just an instant connection.

Sharon, Andrew, Aunt Barbara, Kraig and I went out to eat this evening and as we were walking in the restaurant a lady came running after us. She is from Raleigh and her son had Hunter Syndrome (he passed away in 2001), she recognized that Kraig and Andrew had it, too. She just wanted to speak to us for a few minutes and hug the boys.

On to the medical news . . . . . Kraig has had a rough day today. He hasn't been sleeping well (which could be caused from the high ICP) and his throat is really sore from the intubation yesterday. I have his Albuterol inhaler here, but no nebulizer, thankfully Sharon has Andrew's here and has let us use it tonight. I already gave Kraig one nebi tretment and his breathing is much better.

Dr. Muenzer says that Kraig's MRI confirms that he does have high ICP, how high, we don't know without doing continuous pressure monitoring. I've got some phone calls to make and Brian and I have decisions to make. We've never had good luck with any of the neuro-surgeons at St. Louis Children's Hospital. This is brain surgery, so we need to be very comfortable with the doctor working with Kraig. This may mean traveling for treatment, maybe back here at UNC or possibly at John's Hopkins.

Until next time!
Kris and Kraiggy

Friday, October 22, 2004 1:25 AM CDT

Hello Friends and Family!

We had a schedule change. Kraig’s MRI under general anesthesia was yesterday instead of today and the sleep study will have to be rescheduled. He is not sleeping again tonight, he’s been up coughing quite a bit. I gave him a shot of Albuterol and I’m hoping that will do the trick. The Anesthesiologist was not able to get a secure enough airway just using an LMA, so she put the tube down him, I’m sure that’s why he’s up and coughing now. We will head back to the hospital later this morning to run through his MRI results with Dr. Meunzer.

We did get to visit with Sam and his family on Wednesday evening and we may be able to stop and see them later today. We’ll just have to see how Kraig is feeling. I’d also like to get a little sleep sometime. If you look at the photo page, you can see some pictures from our visit to Sam's house.

Until next time!
Kris and Kraiggy

Tuesday, October 19, 2004 8:56 PM CDT

Hello Friends and Family!

We breezed through today’s appointments. Kraig did great, but he also wasn’t feeling 100%, I think his tummy was bothering him and he was a bit tired. After our last appointment we came back to the hotel and rested for a little bit, after about 40 minutes I guess he felt better and he was re-energized.
Tuesday:
9 AM Skeletal Survey
11 AM Range of Motion with PT
1 PM EKG/Echo
2 PM Ophthalmology

We ate supper at the hotel and then went to South Point with Andrew, Sharon and Aunt Barbara. The weather here is perfect, so we walked around outside and then Andrew stuffed a bear at the Build-A-Bear Workshop. We left at that point because Kraig desperately needed to use a bathroom, so it was easier just to come back to the room. He was tired anyway, so I bathed him and now he’s in bed.

Our schedule for tomorrow . . . . . . . .
Wednesday:
Center for Developmental Learning, this is an all day event with evals for PT, OT, speech, Developmental Pediatrician, Audiology, Psych, etc.

We were supposed to visit with Sam and his family this afternoon, but Sam was not feeling well, so we cancelled for today. Our plan is to visit with him and his family after CDL tomorrow. Hopefully, he is feeling better by then. We are really looking forward to meeting him and the rest of his family.

Here is the schedule then for the rest of the week. It’s such a long week, but it’s nice to get this done in one shot. I’m not looking forward to the sleep study. Kraig has had two already this year at St. Louis Children’s Hospital. His last study showed improvement since surgery, however, he did not have much REM sleep; hopefully he has better quality sleep this time, so that it’s easier to compare the results.

Thursday:
9 AM appt. with Dr. Muenzer followed by labs, questionnaire, etc.
11 AM precare appointment
7 PM sleep study

Friday:
12:30 PM MRI under general anesthesia (poor guy has to wait all morning with no food or drink to get this done)

Saturday:
fly home!!!!!!!!!!

Until next time!
Kris and Kraiggy

Monday, October 18, 2004 11:06 AM CDT

Monday Night update: We made it here. Kraig was perfect on the plane, he was quite content flipping a magazine and then watching an Arthur DVD. We have a long day tomorrow. I'll try to update after we get back from the hospital. I haven't gotten to see Andrew yet, but I know he is here, I already talked to Aunt Barbara on the phone. I also spoke with Sam's Daddy, we are very excited to meet them tomorrow evening!

Hello Friends and Family!

Kraig and I are ready to leave in a couple of hours. Hopefully the severe weather that is predicted for this afternoon will stay away so that we can fly out on time. I’ll keep our schedule of events up in case anyone is wondering how we will spend our week.

Monday:
arrive in Chapel Hill

Tuesday:
9 AM Skeletal Survey
11 AM Range of Motion with PT
1 PM EKG/Echo
2 PM Ophthalmology

Wednesday:
Center for Developmental Learning, this is an all day event with evals for PT, OT, speech, Developmental Pediatrician, Audiology, Psych, etc.

Thursday:
9 AM appt. with Dr. Muenzer followed by labs, questionnaire, etc.
11 AM precare appointment
7 PM sleep study

Friday:
12:30 PM MRI under general anesthesia (poor guy has to wait all morning with no food or drink to get this done)

Saturday:
fly home!!!!!!!!!!

Kraig had a great time last Wednesday night at SIUE. They started up the adaptive PE program again. He sure gave his “student” a run for her money, he was on the go, but he did seem to enjoy being there. On Thursday Kraig’s class went on a field trip. It was a nasty cold and rainy day, but we all still had a good time. We went to the Magic House, then over to the Amtrak Station to eat our lunch, then we rode the train to Union Station. The train was an hour late, so we were late getting back to school. I don’t think the buses were too happy about having to come back for some of the kids, but it couldn’t be helped.

Well, I got some last minute things to pack before I leave to pick up Kraig from school. I’m planning to update later this week and let everyone know how our week is going.

Until next time!
Kris and Kraiggy

Wednesday, October 13, 2004 6:41 AM CDT

Hello Friends and Family!

We had another busy weekend. We did our usual Saturday routine, which hadn’t happened in over a month because of other stuff we had going on. We went to grandma and grandpa’s house and Kraig and grandpa did their usual Saturday run to the park, visiting friends and of course McDonald’s while us girls went shopping for some fall/winter clothes for Chelsey. On Sunday Brian started a small fire so that we could roast hotdogs and marshmallows in the evening. Kraig enjoyed sitting around the fire and he especially enjoyed eating the goodies.

The kids had the day off school on Monday for Columbus Day. Kraig had an appointment at the doctor to get his flu shot, so we did that and then went to the zoo. Kraig just loves riding the train; it was a nice day and we still have plenty of tickets left on our membership, so it was the perfect time to go. After the zoo we decided to go to the movies and see Shark Tales. It was a great movie; Kraig sat through the entire show!

There is not much else to report medically wise this week. I am preparing for our trip to UNC next week. We just got more appointment cards in the mail yesterday. It will be an exhausting week, but it’s also nice to get all of this done in one shot and not have it drag out. Our good little friend Andrew C., his mom and his aunt will also be down in NC next week, so we are excited about seeing them again. We also have plans to meet a new friend, Sam. He and his family live near UNC and have invited all of us over on evening to visit with them. We still need to work out some details for Chelsey while I am away. Brian leaves for work at 5:30 AM and at the earliest is home by 5 PM; Chelsey doesn’t leave for school until 7:15 AM and is home by 4:10 PM. She can take care of herself, but at 11 years old I know she will be scared to be home alone for that long each day. Beth can handle the afternoons, but we still need to figure something out for each morning and then of all weeks, next week there is only half a day of school on Thursday and no school on Friday. This is stressing me out a bit, so hopefully we can make some sort of arrangements for her.

Here is a portion of our schedule for next week:

Monday:
arrive in Chapel Hill

Tuesday:
9 AM Skeletal Survey
11 AM Range of Motion with PT
1 PM EKG/Echo
2 PM Ophthalmology

Wednesday:
Center for Developmental Learning, this is an all day event with evals for PT, OT, speech, Developmental Pediatrician, Audiology, Psych, etc.

Thursday:
9 AM appt. with Dr. Muenzer followed by labs, questionnaire, etc.
11 AM precare appointment
7 PM sleep study

Friday:
12:30 PM MRI under general anesthesia (poor guy has to wait all morning with no food or drink to get this done)

Saturday:
fly home!!!!!!!!!!

Kraig starts a new program at SIUE tonight, it’s a fitness type program. He was enrolled in this program a couple of years ago, but the professor left so the program was cancelled. I was happy to get the letter saying that it would be starting up again. On Thursday, he has a field trip to the Magic House and then a ride on the Amtrak to Union Station.

Until next time!
Kris and Kraiggy

Friday, October 8, 2004 7:45 AM CDT

Hello Friends and Family!

Notice the new picture above of Kraig and dad driving the combine . . . . they were combining beans on a Sunday afternoon.

I don’t really have a whole lot to report this week. Kraig had a great weekend, last week. On Saturday, we went out to the nursing home to visit my grandpa for his 90th birthday. Grandpa fell asleep during the party and Ben had to help him blow out the candles on his cake, but I think he still enjoyed having company come to visit him. Brian worked on Saturday, so I asked my parents to watch Kraig for the rest of the day so that Chels and I would go to Jen and Steve’s wedding. It was all outdoors and I was exhausted just thinking about lugging Kraig’s stroller around.

I’m still working on arranging an LP for Kraig; I still feel that he probably does have high ICP. He does seem to be sleeping a little better these days, but I’ve still been bad about using the c-pap. I know it will help him, but I just get so exhausted fighting him about it. We also worked out a schedule for Kraig to wear his braces for a few hours during school. I wont be sending in his braces every day, but even just a few days a week is better than nothing. Plus, I don’t have to fight him constantly at home to wear them.

We are all getting excited about our Disney trip, just two months away. I still need to reserve a car and think about any extra tickets we may want for SeaWorld or Universal Studios. December will be here before we know it.

Well, I guess that’s about it for the week.

Until next time,
Kris and Kraiggy

Friday, October 1, 2004 7:44 AM CDT

Hello Friends and Family!

Well, the spots are all gone! **YEAH** I don’t know if it was really staph or not, but we are just glad they are gone. Brian never did get them.

Kraig hasn’t been doing too badly in the sleep department (shhhh I better not say that too loudly), but I’ve been bad with his c-pap, I just haven’t felt like dealing with it, so I haven’t. I sort of feel like I’m on overload at the moment, just too many things going on . . . . medical bills, school issues, doctor issues, medical bills, school issues, doctor issues, medical bills, school issues, doctor issues, etc. etc. etc. I think you get the idea. I’m trying to get everything together for our visit to UNC-Chapel Hill in a couple of weeks. I still have some reports I need to gather. Then there is this pesky medical bill from March of 03 that keeps rearing its ugly head, I guess I’ll have to deal with it. Between both of Kraig’s insurances, it has been completely denied and some how, I missed the boat on this bill. It’s for a swallow study, he’s had them before and I don’t understand why it was completely denied by both insurance companies for this one. I hope I can get this resolved because we sure don’t have the $1,300 to pay for it. The lady from the hospital billing office sure got an ear full yesterday. I don’t think these people get it! I understand they want their money, but first of all for the insurance company they take a chunk off right off of the top, why when an individual has to pay a bill they don’t get that type of benefit???? Secondly, it’s not like I don’t have anything else to deal with but these stupid medical bills.

All right, enough on that. Kraig has been doing pretty good medically speaking, but I still have concerns of increased ICP and am working on an LP. Kraig also participated in a little research study yesterday. Not a big deal, but I’m still proud of him none the less. He gave a blood sample for Mark Sands. Mark’s lab has uncovered some inflammatory problems with all of the MPS mice they have been working with and are certain these same problems exist with the kids as well. In order to move forward with this research and hopefully uncover some type of treatment for these problems, they need some blood samples from MPS kids, so he asked if Kraig could do this. I had his blood drawn at St. Louis Children’s Hospital yesterday. Kraig and I waited for Mark to walk over and pick it up and then we offered to show us his new lab. We’ve been to his lab a few times, but not the new one, so of course we went over to take a look. When I took Kraig back to school, I told Jackie (his assistant) that Kraig already had his science lesson for the day.

Last weekend, we had Brian’s company picnic. It was really a lot of fun; they had all sorts of stuff for the kids to do. Brian spent a couple of hours “working” during the picnic, so the kids and I were on our own for a while. I’ve posted a couple of new pictures in Kraig’s album, check them out. Kraig especially enjoyed visiting with the 3 St. Louis Rams Cheerleaders! I'll have to post some pictures of Kraig riding with his dad in the combine, too. He really loves that! Kraig helped his dad combine some beans on Sunday afternoon.

It’s a busy weekend. We are having company over tonight to celebrate some of the Klenke birthdays, so I’ve got to get busy cleaning. I already got the two turkeys baked and cut up and the cheesecake is baked as well. Tomorrow we are celebrating my grandpa’s 90th Birthday and then it’s off to Jen and Steve’s wedding!

Until next time,
Kris and Kraiggy

Tuesday, September 21, 2004 2:16 PM CDT

Hello Friends and Family!

It’s been over a week since I’ve updated, so I thought I better get to it. Kraig is still having sleep issues. Some days are better than others, but most days he wakes during the early morning hours and is then up for a while. I just wish I knew what more I could do to help him sleep better. Kraig did get a new mask for his c-pap machine, this mask looks much more comfortable on him, but we still haven’t logged too much time with the mask on. We just need to keep working at it.

Kraig had his first field trip for the school year last Tuesday. His class and Mary’s class went to the Melvin Price Lock and Dam near Alton and then to Ponderosa for dinner. Kraig a good time and it was such a beautiful day to be out walking around. We got to watch a barge come in from upstream, lock in and then head back down stream, but Kraig was a little more interested in a paint spot on the concrete than watching the barge.

Friday was the first swim day of the school year for Kraiggy. He regular bus driver will be driving his class to and from the YMCA each Friday for their session. Kraig really enjoys the water and had a lot of fun. I did talk to his water assistant and gave him some tips on getting Kraig more involved in the water. This is such good exercise for Kraig and I think he will look forward to swim time each week.

Kraig, Chels and I broke out in some sort of rash on a few days ago. Chelsey came home from school and lifted up her shirt and it was all over her stomach and lower back area, she said most of the bumps hurt and some itched slightly. Later that night when I was getting Kraig ready for bed, I noticed that he had about 5 of these bumps. I called the Peds. office and talked with the nurse, we concluded it could be chicken pox even though both kids have been vaccinated. I was set to work for NES on Saturday morning, but when my alarm went off at 5:15 AM and I got up and turned the light on, I had the same rash. I knew I couldn’t go in and that I should take the kids in to be checked out. We still are not sure what it is, but Chelsey and I are being treated for a staph infection and Kraig is using a topical cream since he has a mild case of this. We’ve had the bumps for 4 days, they have not spread, but they don’t look like they are going away any time soon either. So far Brian hasn’t gotten whatever this is, maybe staph?!?!? Hopefully, he doesn’t come down with it; he is in Maryland until Friday taking classes at JLG.

Until next time!
Kris and Kraiggy

Thursday, September 9, 2004 1:34 PM CDT

Hello Friends and Family!

We’re still having quite a bit of trouble in the sleeping department. It was after 1 AM before he finally went to sleep last night and he was up at 6:40 AM this morning **YAWN** I did get him to lay down again for a while, he’s not sleeping, but I guess he is at least resting some.

On Monday, we participated in the Annual Labor Day Parade in St. Louis. The kids seemed to enjoy that. We rode in Brian’s work truck with the rest of IUOE – Local 513 in our bright orange shirts. We had some problems as soon as we got there, let’s just say; I need to make sure I have Kraig’s bag stocked with diapers next time we go out.

Tonight is open house at both middle schools. I wouldn’t really call it an open house because we have to be there at certain times to talk with certain teachers. It bugs me they schedule both schools on the same nights, we need to be in both buildings at the same time and they are all the way across town from one another.

I talked with pulmonology yesterday. They are supposed to see about getting Kraig a different mask to try with his C-PAP machine. Honestly, I haven’t even been using it much. I am just so tired and I can’t function properly in the middle of the night when I’m running on so little sleep anyway. I hope we can figure out why he is having such difficulties sleeping right now.

Until next time!
Kris and Kraiggy

Wednesday, September 1, 2004 12:43 AM CDT

Hello Friends and Family!

Kraig’s sleep difficulties continue. He just can’t get to sleep some nights and then almost always wakes at some point during the night. I just don’t know why he is having so many problems with sleep right now. I am a little concerned it could be high ICP (intercrainal pressure), he is just not as happy as he usually is and seems to be getting headaches fairly often. We haven’t had a whole lot of luck with his C-PAP. It was delivered about a week and a half ago. I’m thinking we may need to try a different mask, the one he has does not seem to be real comfortable. I need to come up with a schedule for him to wear his leg braces for a while each night and then the C-PAP for sleep. It’s difficult, I can’t get much else done during the time he is using these things, someone needs to be right with him, that person is usually me as Brian almost always works late and then has work to do once he is home.

The kids started school last week. They are both now in middle school (different middle schools though, eeeerrrrr). We did have an issue with Kraig’s start time. The bus was coming out at 7 AM to pick him up, which is way too early, especially when he has so many problems sleeping. He typically gets his best sleep between 5 AM – 8:30 AM, so I hated waking him so early. I spent most of last week driving him into school late each day and trying to get an IEP meeting scheduled so that we could address this problem. The principal finally listened to my concerns and we have an IEP scheduled for this Friday. In the meantime, Kraig has been assigned to a new bus, we really like his new driver and assistant. Judy, the bus driver, is the wife of a former bus driver that Kraig had a few years ago and the assistant on the bus has worked with Kraig in the past. Kraig is now picked up each morning at 9:20 AM and he arrives home from school at 3:15 PM. This shortened day is so much better for him, although it makes it difficult if I want to pick up Chelsey from school. I did talk to the driver about that this morning and arranged to meet her at Chelsey’s school on the days that I pick her up. I just can’t get to both schools since they are all the way across town from each other. Chelsey wants me to pick her up once in a while if I am in town so that she doesn’t have to take the 1 hour and 15 minute ride home on her school bus, she is the last stop for the night, just like last year.

Not much else is going on. I did get the travel arrangements made for our trip to UNC. Kraig and I will be gone October 18 – 23rd. It will be a busy week full of testing. My mom is able to go with us; we scheduled a little later flight on the 18th so that she could work for a few hours that morning. My parents may not be able to go to the MPS Conference in Orlando in December though, since she is taking off time to help me out for the UNC trip.

Until next time!
Kris and Kraiggy

Friday, August 20, 2004 7:38 PM CDT

Hello Friends and Family!

Kraig has had sleep difficulties once again this week. He just can’t get to sleep some nights, when that happens it usually means it’s going to be a long night. We did see Dr. Uong this week (Pulmonology), she went over the results from his last two sleep studies with us. The March study, prior to surgery, was really bad, which we knew and the July study (10 weeks post-op) does show improvement, which is good. However, during the July study, Kraig did not have near as much “good” sleep, so it makes it hard to compare the results. It shows definite improvement; however, if he had a longer period of “good” sleep, would the results be much worse than what they are? Dr. Uong has recommended a repeat sleep study. I dread doing yet another one, but it would be nice to get a clearer picture of what is going on. She has also recommended we give C-PAP a two-week trial period to see how Kraig does. The C-PAP machine was delivered today, so we will see how this goes. Kraig did let me try a mask on him and he kept it on for about 5 minutes before I took it off. Don’t get me wrong, he did try to grab at it a few times, but I thought is initial reaction was pretty good.

We are also working on the arrangements for Kraig’s visit to UNC-Chapel Hill for the Natural History Study. We will be traveling to North Carolina October 18 – 23rd. I am hoping to find someone who can travel with us at least part of that week. It’s going to be a busy schedule all week. Kraig will have a clinic visit, series of x-rays, MRI under general anesthesia, ophthalmology, full day visit to CDL (Center for Developmental Learning), sleep study, blood work up, PT eval . . . I’m sure I’m leaving something out. It will be a long week. Brian wont be able to go since he does not get any vacation time and has to take off in December for our trip to Florida for the National MPS Society Conference. I’m hoping that maybe my mom can make arrangements to go with Kraig and I, it would be nice to have an extra set of hands to help out with Kraig.

School starts on Monday. Both kids are starting middle school this year, and of course each at a different building. That irritates me, they have never been in the same school building, it’s such a pain having them in different buildings. I have talked to Kraig’s Principal about scheduling an IEP meeting right away. I am concerned about the school start time, the bus is scheduled to be here to pick Kraig up at 7 AM, that will just not work when he has such trouble sleeping. I am hoping to get his school day shortened and a bus to pick him up later in the morning. We are also having issues with the medications he needs to take during the day . . . . why does everything have to be such a battle when it comes to school issues?!?!?!?

I did stop in at his school this afternoon . . . . no surprise (but a big disappointment to me) the Principal has not even begun to schedule an IEP meeting. I told him and Kraig’s teacher that I expected a meeting to be held within 2 weeks. I raised the school start time issue last March, so it’s no surprise to them what Kraig’s needs are. I will not mess around with this for months; it needs to be addressed now. I get so sick and tired of these games.

I guess that’s about it for this week. I should have some pictures from Chelsey’s trip to Cancun soon; I’ll post a link to her album once I get that done.

Until next time!
Kris and Kraiggy

Thursday, August 12, 2004 8:11 PM CDT

Hi Family and Friends!

Well, I made it back from Maine. You can view pictures from the BOD meetings and from my trip out to Bar Harbor: Maine Adventures Maine is a beautiful state! Laurie’s parents hosted the entire Board at their home Saturday night, we had a wonderful Lobster Feast. It was the best lobster I have ever eaten. We did acomplish quite a bit of work as well. It was also great to be able to visit the office and see where Barb and Laurie do all of the Society business.

I was so saddened to hear that my dear friend, Jess, held her daughter in her arms as she took her last breath on Monday afternoon. Kaity was a beautiful 13 year old girl who was diagnosed with MPS I. I plan to drive to Indiana tomorrow to attend Kaity’s funeral. I love Jess and her family dearly and am just so sad for them.

Kraig is sleeping a little better the last couple of days, that’s always a blessing. He has an appointment with Dr. Uong next week (Pulmonology), I’m a little anxious about this appointment. I did talk with Mary in Dr. Uong’s office earlier this week and she told me that Kraig’s last sleep study was improved from the one he had in March, but it’s still not great. We will be talking about what to do now. I can only assume that will mean either Bi-PAP or C-PAP. I’m just not sure that Kraig can tolerate using either. We were supposed to try C-PAP during the last sleep study in July, however, Kraig had difficulty sleeping, therefore, we did not want to try and perhaps ruin the test. They have to have so many hours of sleep for the test to be valid. I don’t know if you’ve ever done a sleep study, but it’s quite uncomfortable for Kraig to sleep with all of that “stuff” on, so I wasn’t willing to take any chances of screwing up the results.

We are also fairly certain that Kraig is having seizures again at night. He has had quite a bit of difficulty sleeping the last few weeks and when we do check on him after a few hours of sleep, everything is off of his bed. This either tells us that he is quite uncomfortable at night, or he is having seizures. We believe it’s siezures. I need to talk with his neuro and see what we can do. I don’t know if this will mean an increase in medication or a change in meds.

Chelsey will be home Saturday afternoon. She has been in Cancun since last Saturday with her grandma. I am very anxious to see her. I have talked to her a few times and she is having a great time.

Until next time!
Kris and Kraiggy

In case someone did not read this already, I wanted to keep it in our current journal entry:
TKT’s press release dated July 15, 2004 announced that TKT Received Fast Track Designation For Iduronate-2-Sulfatase for Hunter Syndrome. You can read the full press release here: TKT Press Release

Wednesday, August 4, 2004 4:12 PM CDT

UPDATE, Monday, August 9, 2004
I'm saddend to inform you that my dear friend Jess held her sweet daughter this afternoon as Kaity took her last breath. Kaity went to be with Jesus at 4:47 PM. Please pray for Kaity's family. I love them so much and am so sorry for their loss.

I'll be flying home from Maine tomorrow and trying to make arrangements to drive to Indiana to be there for Jess and her family. If family or friends locally are reading this and can help out with Kraig, please call me. My cell phone does not work in Bangor, but once I get to New York tomorrow I'll have cellular access, then my flight home from New York will get me back into St. Louis around 5 PM. I'll need to leave again on Wednesday or Thursday to be with Jess. Kaity's funeral will be on Friday.

Hello Friends and Family!

We are so happy today; Kraig’s long lost buddy returned home safely! Barney arrived in our mailbox this afternoon and once out of the package he landed safely in Kraig’s arms. I called camp to find out where he was found. As it turns out, he was in the cabin all along. One of the party nights was a western theme, so there were all sorts of cowboy hats in the cabin; Barney was hiding under one of the staff member’s hat. We’re just glad he is home now.

Kraig skipped day camp today. He’s not been feeling the best the last couple of days and neither have I. I have a terrible cold; summer colds are just the worst. Kraig doesn’t have a lot of drainage, but is stuffed up and I think he may have a sore throat. I’m hoping we are all better by Friday, I’m traveling to Maine for a few days and my friend Jen will be helping out with Kraig. I don’t want her to have to take care of a sick child. I hope Kraig sleeps better tonight, he was up last night from 2 AM till 5 AM.

I’ll be adding more pictures, but I do have a few pictures from camp in a photo album for Kraig, you can view those by clicking here: Camp Barnabas Memories

I added a picture above of Kraig with his purple dino pal . . . . together again at last!!!

Until next time,
Kris and Kraiggy

In case someone did not read this already, I wanted to keep it in our current journal entry:
TKT’s press release dated July 15, 2004 announced that TKT Received Fast Track Designation For Iduronate-2-Sulfatase for Hunter Syndrome. You can read the full press release here: TKT Press Release

This is great news. ERT can not come soon enough!

Friday, July 30, 2004 10:07 PM CDT

Hello Friends and Family!

It’s been a busy few weeks; we have had lots going on. Kraig has been away from the Y camp for the last two weeks, but he has stayed plenty active.

Two weeks ago Kraig, Chelsey, my mom and I drove to Indiana (near Louisville, KY) to visit the “Coconut Queen” (AKA Jess) and the “Coconut Princess” (AKA Kaity, she is 13 years old and is diagnosed with MPS I). Jessica is the creator of the MPS Forum. Some of our friends from Ohio (The Cochenour’s, Andrew is diagnosed with MPS II) also drove to Indiana to surprise Jess and Kaity, we had our own little “Gathering of the Coconuters”, it was a great visit, but it was much too short.

Last Friday Brian and I took Kraig to Camp Barnabas for Heroes Week. Camp Barnabas is such a neat Christian camp for children with special needs and their siblings. The kids started attending Camp Barnabas in 2000, so this was our 5th time to go to the camp. Chelsey was supposed to attend again this year, but she was feeling uneasy about it, so she ended up staying with Grandma and Grandpa Clayton for the week. Brian and I drove Kraig down to the camp and dropped him off on Friday. He had another AWESOME counselor this year, her name is Erin. She really took great care of Kraig during the week. Brian and I stayed near the camp in Branson for the week. We had a very nice and relaxing time; it was strange not taking care of someone for a whole week. Erin is going to send us some pictures she took of Kraig at camp. He got to go horseback riding, do archery, swim in the brand new swimming pool, play on the playground, go canoeing and each night they had a special party. Kraig was so tired when we got home, after camp all week and the 5-½ hour drive home; he fell asleep by 8 PM and slept in until 10 AM.

We did have a little problem with camp. When we picked up Kraig yesterday, Erin told us that Kraig’s beloved Barney is missing. Barney has been Kraig’s right arm dino for years, he’s been through every surgery and hospital stay Kraig has had. He is well loved and it shows. Erin was really upset about this and was in tears telling us about it. Cyndi (the camp founder) made an announcement at the closing, so we are hoping that Barney finds his way home safe and unharmed. Kraig’s been sleeping with a “bogus Barney” and hasn’t made a real big deal yet. I did call the camp this morning and they have to call me back, but are fairly certain that Barney has been found. I guess I’m going to have to put a locator tag on him in case he ends up missing again.

Thank you to everyone who sent cards and messages to Kraig at camp. He enjoys getting mail, especially during camp week.

Health wise, Kraig has been doing pretty well. He does have an appointment with pulmonology in a few weeks. Dr. Uong will go over the sleep study results with us and we will talk about his newly developed Reactive Airway. UNC is getting ready to schedule Kraig’s visit for the Natural History study, looks like we will be going to Chapel Hill in October again. It will be a week of tests and doctor appointments this year.

TKT’s press release dated July 15, 2004 announced that TKT Received Fast Track Designation For Iduronate-2-Sulfatase for Hunter Syndrome. You can read the full press release here: TKT Press Release

This is great news. ERT can not come soon enough!

Until next time!
Kris and Kraiggy

Saturday, July 31st UPDATE on Barney!!!

I called camp today and the guy I talked to yesterday was wrong, Barney has not been located. We are so sad and still hoping that Barney returns home soon. Grandma bought Kraiggy a really soft duck today, who we named Steve, but Kraig has no interest in Steve, he wants his pal Barney back.

Sunday, August 1st UPDATE on Barney!!!

Kraig has not been sleeping well the past couple of days, he misses his purple dino. I did get a call from camp again this morning, we were not home at the time, but they left a message. The message said that Barney has been located and will be returned ASAP. I sure hope so. We'll all feel better once Barney is back home where he belongs.

Wednesday, July 14, 2004 3:05 PM CDT

July 21st UPDATE . . . . . .
In case I don't get the page completely updated before Friday, I wanted to remind our readers that Kraig and Chelsey will be off to Camp Barnabas on Friday. They will be at camp from Friday, July 23 thru Thursday, July 29th. Chelsey seems to be especially nervous this year. If you have time, I know they would both enjoy emails or cards sent to them during camp. You can send a plain ole email to them at this address: camper@campbarnabas.org In the subject line put Kraig Klenke or Chelsey Klenke (which ever the case my be), no fancy picture attachments or ecards will be accepted, just plain ole email.

You can also send them real mail at this address:

Kraig Klenke or Chelsey Klenke
Camp Barnabas
Rt. 2 Box 131
Purdy, MO 65734

Brian and I will be staying near the camp in Branson. It's just too far to be driving back and forth and we want to be near the camp, just in case.

Hello Friends and Family!

It’s been a busy week. Kraig is still enjoying day camp at the Y. He comes home tired every night, so I know they keep him busy and active there.

We’ve been taking it slow with the new leg braces. A few weeks ago I noticed Kraig had a sore on his left inside ankle, I immediately thought the braces were rubbing causing the sore, but then a few days later I noticed he had an identical sore on his right hip, the braces don’t go up that high. The sores are finally starting to heal, but I’m not sure why he has them, he hasn’t fallen and I don’t think it’s anything rubbing on him, I’m puzzled?!?!? Anyway, Kraig doesn’t fuss with the braces, but he does not wear them all night, that’s just too long for him and he gets all tangled up in the covers with them. They are quite heavy and bulky to be wearing all night long.

We got surprise visitors on Sunday afternoon. The Van Nostrand Family from Kansas stopped by for a quick visit before heading home. They had been gone all week driving out for an appointment with Dr. Muenzer at UNC. I have known Misty from the MPS Forum for a while now but we had never met in person. All her boys are just adorable; Seth (her 5-year-old) is diagnosed with MPS II. He verbally communicates much better than Kraig has ever been able to. We had a lot of fun with the visit, only it was way too short. Seth and his brother Darian each brought a rock to Kraig and Chelsey, from a cave they had visited in Kentucky. Seth showed me his rock and said, “It looks like a chicken nugget” LOL

Monday night Kraig had a sleep study. This was a follow up from his surgery back in April. He did fall asleep fairly easy, however, he did wake up around 2 AM and had a difficult time falling back to sleep. He woke up numerous times because we had to untangle him and change his positions. I just hope they got all the information they need and we don’t have to do this anytime soon (except for in October when we go back to UNC for the Natural History Study).

We’ll be busy the next week getting everything ready for camp. The kids are returning to Camp Barnabas again this year. It’s such a wonderful Christian camp for special needs kids and their siblings. This will be the fifth time Kraig and Chels have attended.

Until Next Time!
Kris & Kraiggy

Sunday, July 4, 2004 2:24 PM CDT

Happy 4th of July!!!!!!!!!!

Hi Friends and Family!

Time to update, it’s been a week . . . . . Day camp is still going great. Kraig just has a blast every day he is there. This Friday was “Water Day”, my poor little red head got a little pink from being outside so much that day, but his sunburn is not too bad by now.

Thankfully, we had no doctor, therapy or clinic appointments this last week; we like weeks like that. It was actually rather quiet around the house because Chelsey was gone all week. She has a friend that lives in Wisconsin. Helen and Chelsey talk on the phone almost every single day. They became friends a few years ago when they met at an MPS Conference in California, Helen’s sister, Allison, also has a form of MPS. Helen and Chelsey hit it off right away and now enjoy seeing each other every year at the Family Conferences, but they also wanted to see each other a little more. Back in January Helen spent a weekend here at our house (this was in connection with an MPS Board Meeting we had in St. Louis), so anyway, Helen invited Chels up to her house for a week. We met up near Rockford, which is about the halfway mark between our houses.

I hope to get Kraig’s braces back on his feet this evening. I had not been putting them on since he was a little sore from the sunburn and then he also has a small sore on his ankle. Kraig has been so quiet these last few months, hardly talking at all, but today he is quite happy and has been talking a lot more. He even woke up early today and in a great mood so we were able to go to church, all 4 of us!!!!!! . . . early for Kraig is 7 AM; usually it’s more like 9 – 10 AM if we let him sleep in.

Next week Kraig has a follow up sleep study and then the week after Kraig and Chelsey head off to Camp Barnabas. I’ll be sure to post their address at camp; it’s always fun for them to receive email notes and letters while at camp . . . . Chelsey (especially) gets a little home sick while they are there, but they both enjoy it, too.

Until next time!
Kris and Kraig

Friday, June 25, 2004 10:19 PM CDT

Hi Friends and Family!

Well, it’s been another busy week this summer. Kraig is still having a blast at summer camp. He walks in like he owns the place every day. LOL Today they took a field trip to the local park. Kraiggy had a blast!!! He was quite worn out when I picked him up this afternoon.

After camp today, I took Kraig to see Donna for a massage appointment. We started out in the hot tub for about 30 minutes. Kraig loved that and he was so much more relaxed during his massage. We’ll be hitting the hot tub prior to each massage now . . . . Thanks Miss Donna for getting that hot tub ready for us today!

We started Kraig on an inhaler this past week and he is doing well with it. I have been a little concerned about the Albuterol since I posted on the MPS Forum and got responses that it has not worked real well with other MPS kids. So far, Kraig seems to be doing okay with it and his coughing seems a little more under control now..

On Wednesday, Kraig had a dental appointment. He did really well. I remember not to long ago that trips to the dentist were a nightmare. It used to be an appointment that I would not do alone; I had to take another adult with me. It would take Brian and I both holding him down, the hygienist holding the upper body area and then the dentist opening his mouth and doing the cleaning. We would all be dripping in sweat by the time we were done and Kraig would be beat red from crying the entire time. He still doesn’t like it, but I can handle him alone now and he no longer cries throughout the exam. Thankfully, he has no cavities!!! YEAH!!!!!!!!!

Thursday I took Kraig in for his final fitting for his new nighttime leg braces. His new braces are called Ultra-Flex AFO’s. So far he is tolerating them okay. They provide a constant stretch on his ankle joints and heel cords. The tension ranges from 0 – 7, currently, Kraig is at a 3. If all goes well, I will increase the tension by 1 point in 2 weeks and then every 2 weeks there after until we reach 7. Ideally, he should wear the braces 8 – 10 hours a night or while resting during the day (yeah right, like that will happen). I gave him some Motrin before putting them on tonight. I’m sure there is pain while wearing them since there is that constant stretch. I’ll probably take them off around 11 PM tonight. I hope to gradually work up a few more hours each night.

Until next time!
Kris and Kraig

Tuesday, June 15, 2004 9:34 AM CDT

Hello Friends and Family!

Summer camp is going GREAT!!! Kraig just loves it there; he really enjoys his daily swim.

Kraig still has that nasty cough. He has had it since his surgery back in April. I’m sure it all stems from being intubated 3 times. I’ve taken him to the doctor twice now, we first tired antibiotic, which didn’t do a thing for him and then yesterday I took him in for a chest x-ray. The x-ray was clear, which is good, but we still have the cough. We are going to try Albuterol treatments to see if that helps.

Finally, Kraig’s meds have arrived and they are correct. YIPPEE!!!! I had to hunt down another week supply from Walgreens over the weekend. I waited until Saturday hoping his mail order would arrive, but they didn’t. I had to call a couple of Walgreens stores before I could find the chewable form, but I finally found them.

We are still waiting on his new braces. Still no phone call telling us they are done. I would expect to get that call sometime this week.

Well, nothing more to report this week. Over all, Kraig has been doing really good. I almost hate to type this out, for fear we will have a bad night . . . . but he has been sleeping fairly well these last few weeks. Hopefully, this will continue. His follow up sleep study is scheduled for next month.

Until next time!

Kris and Kraig

p.s. forgot to mention that Chels got a new puppy last week for her birthday. I'll put up some new pics in Kraig's photo album. Kraig doesn't quite know what to think of Spooky.

p.p.s. I'll have to wait to add new pictures. My Jasc Paint Shop Pro trial period ended. So I need to figure out how to resize my photos.

Monday, June 7, 2004 6:51 PM CDT

Hello Friends and Family!

SCHOOL IS OUT SCHOOL IS OUT SCHOOL IS OUT!!!!!!!!!

Can you tell we’re happy that SCHOOL IS OUT for the summer! Kraig started Day Camp at the YMCA today. He loves it there and they take such good care of him. He is fully included in all the camp activities. He gets to swim 4 days a week and then they always take a field trip every Friday. This Friday they are going bowling.

The last week of school was busy with all sorts of activities. On Wednesday, the school sponsored “Crazy Hair and Sunglasses Day for MPS”, a part of the Casual Dress for MPS program through the National MPS Society. Originally, the entire district was going to participate, but one thing after another came up and that never happened. However, Woodland School (Kraig’s building) did an awesome job, the kids brought in over $600!!!!!! I posted a picture of Kraig with his “crazy hair”. I knew he would never wear sunglasses, so he opted for blue streaks instead. (He’s still got blue on his scalp, hopefully it will be gone soon)

We hope to get Kraig’s new braces sometime this week. The secondary insurance is finally straightened out and has approved the braces now, so they are in the process of being made. We’re not even sure how well these will work for Kraig, but we feel that it’s worth a shot to try them.

Our latest challenge has been his medication. There was a mix up with the prescription; the pharmacy filled it for regular tablets instead of chewable tablets. I’ve spent several hours on Saturday and today trying to get this all straightened out and it’s all still messed up. Our prescription coverage changed, as of June 1, we can no longer use Express Scripts (the mail order pharmacy that filled this prescription wrong), anyway, this is all causing more of a problem for me now. I hope we can get this corrected soon.

Until next time!
ttfn,
Kris and Kraig

Tuesday, May 25, 2004 9:02 AM CDT

Thursday, May 27, 2004 UPDATE

Well, there will be a delay in getting Kraig's new braces (ultra flex). Kraig's secondary insurance is requiring a second price quote since the cost is over $3,000. I don't want to go with another company making these braces because I am comfortable with the current company we are using and they come right to the hospital and work with the therapists there. I guess his secondary insurance would rather we put Kraig through the heel cord surgery, which would be much more pain and agnony for Kraig (and may not even work or worse yet cause him to quit walking all together) and much much more expensive than just trying these braces. Yes, they are ridiculously expensive, but after much research and many medical evaluations, Brian and I feel this is the best option for Kraig. Hopefully this delay wont last long.

Hello Friends and Family!

Kraig has had a pretty good week. He is sleeping a little better, which is always a good thing for everyone in the house. His class took a field trip to visit their new school last week. It’s going to be such a big change next year, both of my kids are moving on to middle school (middle school starts in 6th grade in our district), but of course my kids will once again be in different schools. (eeeeeeerrrrrrrrrr) Kraig will be at the new middle school, Liberty, and Chels will be at the old middle school, Lincoln. Why? You ask. The program Kraig needs is in the Liberty building, but we are zoned for Lincoln Middle School, so that is why Chels will be there. I hate the way our district “drew the lines” for the middle schools, basically Chelsey’s current elementary school is split in half, each group going to different schools for 3 years then back together again for High School. Anyway, it will be a big change; it’s kind of scary to think about. I did go along so that I could see the new classroom and eat lunch with Kraig. They also did PE while we were there, so it was nice to meet the adaptive PE teacher.

Over the weekend, we celebrated Chelsey’s birthday with Brian’s side of the family. We all had a nice get together here at our house and of course Chels got lots of nice gifts. I can’t believe she is going to be 11 years old already.

On Monday, Kraig had 2 appointments. The first was at the hospital with a PT from the CP clinic and an orthotist (not sure how to spell that). Kraig was measured and casted for a new nighttime brace. I guess it’s worth a shot to try this out and see if it will stretch those heel cords a little, which will make it easier for him with balance and walking. It will be about a week and a half to two weeks before the braces are done. Kraig couldn’t decide if he wanted camouflage or flags on his braces so they are making him one of each. We also saw our Pediatrician yesterday; I wanted him to check him out since he’s still had a nasty cough since his surgery last month. The doctor put him on Zythromax in case this is something bronchial, if the antibiotic does not work, then we will have to see Pulmonology for further testing.

Just a few more days until summer vacation officially starts. My kids can’t wait for the school year to end.

Until next time!
ttfn,
Kris and Kraig

Tuesday, May 18, 2004 10:01 AM CDT

Okay Tami, I’m not as quick to update about the weekend as Jennifer is (she’s quick)!

I had a great time in Minneapolis over the weekend. I just decided about two weeks ago that I would attend the WORLD Lysosomal Disease Research Network Symposium and the Patient/Parent Advocacy meetings. Thankfully, my mom had given me her FF miles so that I didn’t have to pay for my airfare (thanks mom!) I had the opportunity to meet several MPS Families that I had not met before, The Restemeyer’s, The White’s and a couple of others and then I got to see several of my other MPS Friends as well. Dr. Muenzer was in attendance, so I had the opportunity to talk to him in person about Kraig’s ordeal and ask a few questions. I also saw Kraig’s former genetics doctor, Dr. Steiner. It was nice to see him and chat for a few minutes. He diagnosed Kraig 9 ½ years ago, then moved to Oregon about 18 months later. He did remember who I was and asked how Kraig was doing.

Okay, on to Kraiggy news . . . . . . He is doing pretty good, but is still having trouble walking, especially in the mornings. We are not sure what is causing this, it could be his hips!??!?! He is also not sleeping real well, his breathing is much better, but he just can’t get to sleep. We have been using Melatonin for years, with great success I might add, but we may try Chloral Hydrate to see if that helps. It’s always a guessing game when it comes to Kraig. I need to call his ENT also, Kraig still have kind of a nasty cough, for being 4 weeks out of his initial surgery I would think the cough would be better by now. About 2 weeks ago Kraig had an appointment with his Neuro and we discussed his feet and now the walking issues, so Dr. Noetzel has set up an appointment next Monday with PT in the CP Clinic. I hope we can find adequate shoes for Kraig’s feet and maybe even come up with some new options to help his balance and walking.

Until next time!

Kris and Kraiggy

Saturday, May 8, 2004 3:10 PM CDT

Kraig has had a pretty good week. He has worked his way up to almost his regular diet now. I know he’s really tired of this soft diet, he’s happy to be eating some regular stuff now. We briefly saw his ENT on Wednesday and he wrote a release for him to go back to school on Monday and resume OT, PT and Speech Therapy. I took Kraig to visit school on Friday, everyone was really happy to see him there.

Kraig has been sleeping much better this last week. We all needed this, I know I was a walking zombie from lack of sleep. I think his quality of sleep is much better now, too. I already have his repeat sleep study scheduled for July 12th, I’m anxious to see how he does now. He has been sleeping in each morning, so it should be real fun waking him up early for school on Monday.

Kraig also had an appointment with Neurology on Wednesday; we are keeping his seizure meds at the same dosage. Dr. Noetzel is thinking about trying some other kind of brace on Kraig’s feet. He’s really having a hard time walking these days and finding shoes to properly fit him is near impossible. I just bought him 2 new pair of shoes, and now he’s getting blisters on his toes. Poor guy, I wish he could tell me these things before we have problems. We may have to go with very very expensive custom-made shoes next.

Until next time!
ttfn,
Kris

Friday, April 30, 2004 5:25 PM CDT

new picture and
8:30 PM UPDATE below********

WE’RE HOME!!!!! Grandma came and rescued us this afternoon. Kraig was sure ready to bust out of there. He was a handful this morning, getting into all sorts of trouble. Can you believe I left the house without his chewy?!?!? That’s a crisis, he was going nuts not having anything to chew on, he was grabbing anything and everything and sticking it in his mouth. I asked his nurse yesterday to call up to therapy services and have them send down something for him. After about 2 hours and still nothing, she called them again and said it was kind of an emergency they get something to him right away. We were desperate, so we gave him a tape roll, he had that destroyed in a matter of minutes. They finally arrived and brought him a green grabber . . . . . . WHEW!!!!!!!

I hope the third time does the trick. Praying for no more visits to the OR in the middle of the night or at all for that matter. When Kraig started to bleed Wednesday night we called ENT on call who did say to come on in to have him looked at. I didn't grab many things because I was certain that it was nothing and we'd be sent home. However, by the time we got to the hospital the bleeding had gotten worse, the ENT on call had a look and said it was back to the OR. I was scared out of my mind once again, his regular ENT was not on call that night and the anesthesia doc we got was not one we'd had before, the only one in the OR that had been with Kraig recently was an anesthesia fellow (at least we had that). We just didn't have a choice, he had to go or the bleeding wouldn't stop. I did get to talk with the Anesthesia doc for about 10 minutes prior to them taking him back. It took them over an hour this time, he didn't get out of the OR until around 1:15 AM. That was the second time in a week we had been in that surgery waiting room in the middle of the night all alone, except for the cleaning crew (they must shampoo those carpets every day because they did it each night we were there).

Kraig was sent back to the PICU after his surgery but this time did not require O2. His breathing was great! We got to his room around 1:45 AM and then Brian left to go home so he could sleep a couple of hours before he had to go to work. Kraig was not a happy camper all night; this little boy just rolled over and over and over in bed. The nurse and I stood at his bed for 2 hours keeping his IV line and leads from tangling around him. I was sweating by the time he finally fell asleep around 4 AM. He really kicked my butt this hospital stay. There was no room in the parent lounge to sleep and I couldn't really leave Kraig's room anyway, so once again I got to "sleep" in the comfy bouncy chair next to his bed. I got maybe one hour of sleep (real quality sleep I might add). He did sleep until around 8ish and then it was the battle to keep him happy again and untangled. The docs wrote orders to transfer him to the floor in the morning, but it takes so long to actually get him there. PICU is so confining, I have loved all of our nurses there, but I can't bring food in his room or use my cell phone (or any phone for that matter) and if I have to use the restroom I have to leave and sign out. Between the hours of 7 AM and 10 AM you have to remain in your child’s room, if you do leave the unit you can't return until after 10 AM, the docs are doing rounds at this time. I just can't leave Kraig for that long, he'd have all his lines pulled out, so I can only leave if Brian or one of my parents are there to sit with him.

Kraig was transferred to the 10th floor again. It's really nice up there, they just opened the floor last week, it has been totally remodeled, and you can still smell the newness. Thankfully, we had a private room again this time, however, Kraig still didn't sleep last night. I was certain he'd sleep last night, I know he's tired, he hasn't slept more than 5 hours in a single day since he had his original surgery. I got up I don't know how many times last night to reset his IVAC and pulse ox, I finally just let them beep and let the nurses come in eventually to fix them. I am still so tired, it was after midnight again before he fell asleep (I'm not really sure what time it was, the days are just a blur lately because I'm so tired from lack of sleep) he was up again by 6:30 AM.

When Kraig is on the floor we have a lot more freedom and can explore the hospital (although Kraig gets tired of this rather quickly). We walked around the roof top garden for a while; it's beautiful up there this time of year with all of the flowers and trees, we stopped by the Resource Center, Child Life and then sat in the lobby to people watch.

I sure hope this child will sleep tonight. I've got to get more than a couple of hours tonight; I'm just exhausted. I'll be keeping a very watchful eye on Kraig for the next week or so. Our 14 days are up this Monday, but we will still be on a soft diet for a few days longer, can't be too careful! I just hope there is no more bleeding and no more trips to the OR.

I do have his repeat sleep study scheduled for July. I’m anxious to know if this has really helped him at all (I sure hope so after all we have been through). The ENT and Pulmonology keep asking if his sleeping is better, I can’t really judge since he just doesn’t sleep much. For the most part, I’d say he is quieter when he does sleep though.

I’ll be keeping Kraig out of school again next week, so I’ll have to find something to keep him occupied at home. I did talk to Donna this afternoon and am taking him to see her on Monday so she can give him a massage; it’s been a few months since we’ve seen Donna. She’s a miracle worker, I’m sure he’ll enjoy his massage.

I also made plans to go to a MPS Patient Advocacy Meeting in Minneapolis in two weeks. I still need to work out the details of who will be watching the kids while I am gone. I’ll only be gone for 2 days (over the weekend), but Brian will be working so I’ve got to find someone to watch Kraig, Chels can pretty much take care of herself. Who else but an MPS parent would look at these meetings as a “vacation”?!?!?! I am looking forward to a couple days to myself.

ttfn,
Kris and Kraiggy

********Kraig has me at wits end, he's a little stinker these days. I think it's his way of "getting back" at us for putting him through all of this. I baked some cookies tonight (you know the kind you just break off and bake) . . . . what do you think my little turkey did while I was not looking, he ate a cookie . . . . . let's hope this doesn't cause a problem. I guess he's tired of his soft diet and wants some real food.

Friday, April 30, 2004 9:08 AM CDT

YEAH!!!! We're doing much better today and will be released a little later. We spent all day in PICU yesterday and was transferred to the floor in the evening. It's so much nicer on the floor, we have more freedom.

Kraig is definately ready to leave, he's getting quire board. We've got to keep him really low key for another week and hope no more bleeding.

I've got to get back to Kraig. I'll update again later.

ttfn,
Kris and Kraiggy

P.S. Kraig says "Thank You" for all the prayers and support!

Thursday, April 29, 2004 10:48 AM CDT

*****YAAAAAAAAWNNNNNNNN*****

We're in the hospital once again. While eating supper last night Kraig began holding his food in his mouth (not uncommon for him), however, once he started to spit it out I thought I saw blood but wasn't sure if it was the color of the food. I gave him some water and watched him for about 90 minutes, around that time I saw trace amounts of blood. We called ENT on call and spoke with him for a while. Since we are 50 minutes from the hospital, he thought it would be best to come in and check him out. We packed up (light packing, thinking it was really nothing and we'd be sent home *HA*) By the time we got there the bleeding was worse. The ER doc checked him out and then ENT on call (who is the same doc we saw during this bleed in the middle of the night last week). It was decided it was best to send him back to the OR to cauterize once again.

He was taken up to the OR around 11:30 PM and was done around 1:00 AM. Kraig was then taken to the PICU for close monitoring last night and that's where we remain this morning. Looks like he will be moved to the floor sometime today and if all goes well, he should be released tomorrow.

This is so scary to watch my little sweetie go through all of this 3 times now. Anesthesia is our biggest worry. Last nights intubation/extubation went okay, but the doc said it wasn't easy, but wasn't too bad either, he rated it at moderate.

Please keep my red fred in your prayers, his poor little throat is so sore and now he's swollen again from the surgery last night. I'll update when I can. My mom just stopped by for an hour this morning to sit with him in PICU, I got to get back up there.

ttfn,
Kris and Kraiggy

p.s. NO, I DIDN'T SPELL CHECK!

Monday, April 26, 2004 7:16 AM CDT

Why wont this little boy sleep?!?!?!? He's only gotten a few hours of sleep each night. And you know that if Kraig doesn't sleep, neither does mom. He is just real restless each night. For the last two nights, it's been after 1 AM before he finally falls asleep and then he's up around 6 AM.

Kraig is eating a little better. He has had some chicken noodle soup and yogurt in addition to his snow cones.

I emailed his Peditrician to ask if he has any suggestions on what I can do to get him to sleep more. Dr. Epstein was out of town all last week, so he didn't see him in the hospital. (He was running the Boston Marathon) I was a little upset that no one from his office came to see Kraig while he was in the hospital, he told me that someone would come and check on Kraig. The Thursday before surgery I had to take Kraig in to have his ears checked, we saw Dr. Ruby that day and I reminded her that Kraig was having surgery on the 19th, she also told me that someone from the office would be there. Unless someone came during one of the rare times I was out of Kraig's room?!?!? Dr. E did ask me in his email if anyone followed Kraig, I responded with a NO.

I hope I can get Kraig to take a nap today. I wouldn't mind catching a few winks myself. We may go for a drive today, we both could use a change of scenery.

ttfn,
Kris and Kraiggy

Saturday, April 24, 2004 8:14 PM CDT

Well, Kraig busted out of the hospital yesterday. YEAH!!!!!!!!! He is doing better (obviously), but he doesn't want to eat much. I'm trying to avoid the milky stuff right now, that seems to produce the flemy stuff which caused him problems in the hospital. Don't worry, I wont deprive him of his well deserved ice cream (from Bobby's of course!!!), he's just going to have to wait a few more days. For now, his diet consists of ice chips with snow cone flavoring, apple sauce, yogurt, chicken noodle soup and popcicles. Giving his meds takes forever, especially in the mornings, he doesn't like to swallow after he has been sleeping for a while.

Thankfully, he did sleep last night. I knew he was tired, he didn't sleep a wink on Thursday, he didn't fall asleep until 6 AM. Right about that time the docs came in to make their rounds, I wouldn't let them touch him, I sure didn't want him to wake up then. He tossed and turned all night, the pulse ox was alarming all night as well as his IVAC (he kept kinking the lines). I finally unplugged the pulse ox, I was tired of hearing it and it wasn't reading right anyway because he was moving around so much. He got all his IV's out and the one of his left hand left an additional mark near his knuckles, it looks really bad now, I'm gonna have to keep an eye on it so it doesn't get infected.

Kraig is happy to be home and in his own territory, we've even got a few smiles out of him. He did cry real tears last night, that about ripped my heart out. He only does that when he is in real pain. Tylenol is all he gets (even at the hospital).

We really have to keep him as low key as possible. Since he already had post op bleeding he is at a higher risk of it happening again. I'm a little nervous about being 50 minutes away from the hospital if that were to happen. We're just watching him as close as we can and praying it doesn't happen.

Well, we are gonna snuggle on the couch and watch Good Boy, I'm hoping it will keep his attention.

Thanks for checking in on us!

ttfn,
Kris and Kraiggy

Thursday, April 22, 2004 10:51 AM CDT

Kraig had a pretty rough day yesterday, lots of upper airway conjestion and his sats would drop frequently, no bleeding though :-) We did have to suction him often during the day and into the evening. Finally around 9 PM he started drinking and eating ice chips which made a huge difference.

He fell asleep around 1 AM, so I was finally able to get a few hours of sleep (whew). He's still been sleeping most of the morning, but did take his tylenol and lamictal orally this morning. I'm hoping that once he wakes up for the day that he'll start drinking again. Grandma is sitting with him right now so that I can take a little break.

ttfn,
Kris

Wednesday, April 21, 2004 10:57 AM CDT

Lookie there I just start this journal and am not doing a good time with updates. Inpatient hospital life gets hectic.

I wish this was a good update, but unfortunately, Kraig is having some complications. He did move the floor yesterday afternoon, but almost immediately starting having problems once there. His breathing got labored so respirtory therapy was called to do breathing treatments, which helped and he started coughing like he was supposed to, but then started coughing blood. Another complication we were quite concerned about. His ENT decided to take him back to the OR at midnight last night to cauterize the area to stop the bleeding. This has worked, but because it's happened once, he has a greater chance of it happening again. He is back in PICU and having complications with his breathing (a result of being intubated and extubated twice now on top of the surgery).

Keep praying for the little red head. He's content watching Barney and laying on his tummy for now.

ttfn,
Kris

Saturday, April 17, 2004 5:41 AM CDT

Hi Everyone! Well, Mom talked to Dr. Hershburg from Children's Hospital yesterday afternoon. She says she's feels better about my surgery now that she got to talk to the head of Anesthesia. The goal will be to extubate me BEFORE I leave the OR, however, Dr. Hershburg said that there are a lot of things that can be done in PICU to get that tube out if I have to go there still intubated. Dr. Hershburg will probably being doing the anesthesia, if not, he said it would be Dr. Cox, the doctor who did my last anesthesia. I know that mom was worried if she didn't talk to them before I went in, we would get another doctor who didn't know anything about MPS.

I just wish this surgery were done and over with. I want to get things back to normal! Mom also talked to the SDS nurse, I don't have to be at the hospital until 11:15 AM on Monday morning. Mom says we'll stay up late on Sunday night and have a party with all my favorite foods : )

You can send me ecards while I am in the hospital, click on the St. Louis Children's Hospital website http://www.stlouischildrens.org/sections/kids_parents.asp then click on the link in the left column that says "Send a Patient Greeting", hospital volunteers will deliver the card to my room.

Well, have a good weekend everyone!

ttfn,
Kraig (and Mom)

Friday, April 16, 2004 12:50 AM CDT

It's the hurry up and wait game today. Mom is waiting for 2 very important phone calls today. One from the SDS nurse to give surgery time and eating and drinking instructions and the second call from the Aneshtesia Doctor who will be working with me on Monday. Mom wants to talk directly to Anesthesia before my surgery (she'd kinda picky about my care).

Yesterday mom took me to the Pediatrician to have my ears checked out. Dr. Epstein is on vacation (Mom tells him all the time that he's not allowed to leave when I need him, but he's running the Boston Marathon, so I guess I'll forgive him), so we had to see Dr. Ruby. She said my ears and lungs are clear, but I have a lot of nasal/sinus stuff going on. We are trying a new nasal spray, hopefully that will help.

Mom said I didn't have to go back to school yesterday YIPPIE!!!!!!!!! So instead we went to the zoo so I could ride the train. I LOVE that train, but it took so long because there were a lot of other people that wanted to ride it, too. I'm not real patient when waiting for something like the train, but I managed and was quite happy once I got on it. SHHHHHHHHHHHH don't tell Chels about the zoo, she doesn't know I skipped school, she might be upset if she finds out.

I'll post again and let you know what time my surgery is once Mom gets the phone call later today.

ttfn,
Kraig (and Mom)

Wednesday, April 14, 2004 9:44 PM CDT

Welcome to my journal. I thought I'd have mom help me create this to keep everyone up to date about my life.

I'm scheduled to have surgery on Monday. Last week Mom had to take me to several doctor appointments to prepare for the surgery. This week Mom has been on the phone a lot, she has been talking to all the doctors and nurses that will be involved in my care. I really don't want to have to go through this, but I know that mom and dad are doing what they think is best for me.

I'll be sure to have mom post in my journal after the surgery so that you all know what is going on.

Please remember to say a prayer for me and the all the doctors and nurses that will be taking care of me on Monday and during my hospital stay.

ttfn,
Kraig

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