History

Friday, August 14, 2009 8:22 PM CDT

I know that it has been a long time since the last journal entry. Everyone has been very busy.

Andrew continues on his ERT and is doing well. Sharon can now do his infusions and since she is a nurse she can get paid to do the infusions. It is better that way then she doesn't have to get him out of school.

Andrew is stumbling a lot lately. He trips and falls all of the time. He has so many bruises on his legs and elbows. We think that he is starting to get neurologically involved now.

We are getting ready to have Andrew's walk for MPS. It is August 29th in Clarksburg, Ohio. If you want to come or make a donation just e-mail me at bpryor2@columbus.rr.com

Friday, January 16, 2009 8:49 PM CST

It is has been busy lately but every thing has been going good for Andrew.

On November 30th Andrew turned 11yrs old. This is a day that the Genetics doctor said would never happen. We had a party for Andrew and he loved it. He got his favorite, movies.

Andrew fell just after Thanksgiving and the doctor was not sure if he broke his wrist or not. The Orthopedic doctor said that his joint is definately deformed but he thinks that it is from the MPS. He splinted his wrist and it seemed to help.

Andrew has been falling lately. He will be walking and just catch his foot on the floor and just fall. This has been happening a lot lately with or without shoes.

Andrew has been so happy lately. He just laughes and gives hugs and kisses. Things have been going great with his ERT infusions.

Friday, August 1, 2008 8:12 PM CDT

Ok, Ok I know that it has been a long time since the Caringbridge site has been updated. No news is good news.

Andrew has been doing great. He continues to get his ERT weekly and to get his IVIg every other week.

Andrew has been a busy boy this summer. He went to see Dr. Muenzer in Chapel Hill, NC. Dr. Muenzer was pleased to see how well Andrew is doing. He met his little friend Kraig Klenke there and was happy to see him and his mommy Kris.

In June, Andrew, his Mommy and Patrick went to Canada to the International MPS Conference. The met with some old friends and met some new ones.

Andrew will be having his walk October 18,2008 in his hometown of Clarksburg,Ohio. The local church wants to have a fish fry. People come from all over for the fish fry dinners and I must say so myself that they are delicious. :)

Saturday, February 2, 2008 11:27 PM CST

All is well with Andrew. He went to see his Genetics doctor for a follow up appointment and he surprised the Genetics doctor. He could not beleive how well Andrew looked. He said this is the best that he has ever looked. Of course he just met him a little over a year ago but hey we will take it.

Sharon, Andrew's mother, was elected to the Board of the National MPS Society. She was elected to a 2yr term. She will be going to Las Vegas in February and the best part is that I will get to have Andrew for the weekend. I just love having him here with me and cherish every moment that I get with him.

Andrew continues to get ERT every week and his IVIg infusions every other week. He has been very healthy this year. It has been a long time since he has had any infections. KNOCK ON WOOD. Since starting ERT we have noticed that Andrew's hair is now softer and darker. He used to have very light hair and now it is very dark.

We have lost a few MPS friends over the last few months and a few are sick and not doing well. Please pray for the famlies.

Friday, December 28, 2007 9:35 PM CST

MERRY CHRISTMAS AND A HAPPY NEW YEAR

Andrew had a wonderful Christmas. He got what he wanted most of all, DVD's and clothes. He was very happy to have all 25 of his family members there to scratch his back and rub his head. HA HA HA

Andrew continues to get home ERT infusions. He is doing very well on them. He is very happy and energetic. He is on school break for the Christmas holiday and he has been taking advantage of it by sleeping in. Today he slept in until after noon.

For those who don't know, Andrew's mommy,Sharon was elected to the Board of Directors for the MPS Society. She will serve a 2yr term.

This year Andrew's cousins who are in the Army were all together for Christmas for the first time in 6yrs. They couldn't believe how well Andrew was doing and how good he looked. We are so proud of them.

As always, please continue to pray for those who are serving our country and those families affected with MPS.

Saturday, December 1, 2007 10:46 PM CST

When Andrew was diagnosed with MPS the doctor told us that Andrew would not live past the age of 5. Andrew was 3 1/2yrs old then. We set up his Make A Wish trip and he went to Disney World.

Yesterday Andrew turned 10yrs old. We had a celebration at my house. Andrew was so happy. He was running around and having a great time. He knew that it was his day. He got some more vidoes for his birthday. He sat and watched them during his party. Hey, it was his party and he could do what he wanted.

Andrew is doing great on ERT. Still no reactions. He seems to be more alert and at times makes direct eye contact with you. Sometimes it seems like he is trying to say something to you. It also seems like he can hear you better.

Friday, July 27, 2007 6:55 AM CDT

It has been a while since the last update. Andrew has been doing great with his home infusions. No problems. KNOCK ON WOOD!!!

A few weeks ago Andrew caught a "bug" that was going around and didn't look or feel good for a couple of days but bounced back to himself quickly.

Andrew just had a follow up with the Neurosurgeon who follows him to make sure he doesn't have high pressure. The doctor said that the CT scan of his brain looked great. There were no changes from the last one almost 6 months ago. Sharon said that she really doesn't know what a brain CT should look like but his looked great to her.

Sharon is getting started on Andrew's walk that will be October 6,2007. It will be in Clarksburg, Ohio where they live. We have to schedule it around the OSU Buckeyes schedule since Sharon has season tickets.

Wednesday, May 30, 2007 9:22 PM CDT

Andrew started his home infusions for ERT yesterday. He did great and there were no problems. It will be so much easier for Sharon to have them done at home instead of having to drive 45 minutes to Columbus or 20 minutes to Washington courthouse(doctor's office). He will be the first boy, since they approved the ERT for Hunters in July, to be on home infusions. This is since they had an open label and anyone with Hunters could get it. It is very exciting because this will allow other boys to start on home infusions. Leave it up to Andrew to be the first.

Last week we noticed that Andrew was walking funny. He was kind of hunched over. We don't know if it is his hips or what. He seemed fine the other day. We don't know if his legs or hips were sore or what. We are going to keep an eye on it though.

School will be out in a few weeks. We will have to deal with hot weather and breathing problems then. YUCK!!!!

Thursday, May 10, 2007 7:10 PM CDT

Andrew is doing very well on the ERT. He is now getting it in the doctors office and will be doing home infusions in the next couple of weeks.
Andrew went to see the heart doctor a while ago. I am not sure if I updated that but, he said that Andrew's heart is stable. In the world of MPS we will take stable anyday. It is not any better but it has not gotten any worse either. Andrew seems to be so happy. He is always laughing and running around.

Sunday, March 11, 2007 7:37 AM CDT

Last week we were at the National MPS Society Conference in Washington D.C. We had a great time seeing old friends and meeting new ones.
We went to the Russell Senate building to meet with our Senators to talk about MPS and make them aware of the many issues that we have with MPS on a daily basis. Our Senators Voinovich and Brown could not come personally but they sent a representative from their offices over to meet with us. They were very attentive to us. They asked lots of questions and took notes. We really appreciated the time that they took out of their busy schedules to come and talk with us.
We went sight seeing around Washington D.C and Andrew got his picture taken in front of many of the monuments in Washington D.C.
While waiting to talk to our Senators representatives we were talking with Dr. Mark Sands from St. Louis. He was asking about Andrew and if he was in ERT. Andrew came running by and he got to see him. He said that he looked good for being on ERT and wanted to know if he was in the trials. I said no that he just had his #20 infusion. He was surprised. He said," you must be kidding me" I said nope. He said that Andrew was so loose and had a lot of range in his extremities that he thought that he was on ERT for a long time. We told him how we thought that Andrew could hear better and he suggested getting tested for that because they thought that the mouse model did have improvement with hearing but it was hard to check hearing in a mouse.HA HA HA HA. He also suggested to have Andrew's IGg levels checked again. He said that once the mice were started on ERT that their immune systems came back up. We told Andrew's pediatrician and she wants to wait until the summer when he is out of school and the weather is better and it is not cold and flu season. Makes sense to us. Dr. Sands was amazed at how well Andrew was doing on ERT without being in the trials and being on ERT for a long period of time. Goes to show you that they don't always know things and that they can't group every MPS child into the same catagory. Some are very different in their own way. :)

Wednesday, February 28, 2007 10:08 PM CST

Andrew is doing so well with his ERT. We are seeing more benefits each week. He is so happy and more energetic and those who know Andrew know that is a lot of energy.

We leave on Saturday to go to Washington D.C. We are going to be having brunch at the Capital on tuesday. I hope that Andrew makes an impact on the Representatives and Senators.

We will be having loads of fun with friends that we haven't seen in a while. We are getting excited because the conference is always a blast.

Friday, February 2, 2007 7:10 PM CST

On Monday, Andrew will be getting his 15th infusion. He has been doing so well. He tolerates the infusion so well. The doctor is talking about starting him on home infusions soon. He wants to get to #18 before they start home infusions.
Andrew will make eye contact with you now. It seems like he can hear better too. You can actually tell him something to do with out having to scream really loud. Andrew has started going to the potty. His teachers said that he is going at school at least once a day. When he is at home sometimes he will go into the bathroom and lift the toilet seat and then shut it and then sit on it. You go in and put him on the potty and he will go. He is trying to tell us in his own way that he needs to go potty.

Sunday, December 3, 2006 6:55 PM CST

Andrew just turned 9yrs old on November 30. We had a party for him the night before at my house. We had about 13 people there. I pick up that kids from school on Wednesdays and we had a party for him then. He was so happy. He got some movies that he didn't have. I got him a super heros shirt. I said that he is my superhero so I got him a shirt with the others on it. Hopefully, his little brother Patrick won't try to steal it. HA HA HA.

Andrew is going for infusion #7. He has so much more energy now. He seems like he is even happier if that is possible. Those who know Andrew know that he is one happy little boy but just imagine him happier. He is getting faster too. His teacher said that he can run even faster and they have a hard time catching him. Can you see all of these teachers at school chasing this kid through the halls? I can see it with the Mission Impossible music playing in the back ground. HA HA HA.

Monday, November 6, 2006 6:51 PM CST

Andrew had his 3rd infusion today. He did very well. No reactions at all.
Last week the local papaer came and did a story about Andrew. Andrew's doctor today told Sharon that a family called him who read about Andrew in the paper and their son has Hunter's also and would like to talk about starting treatment for their son. It is a small world. Thank goodness that the local paper ran the article and now this other Hunter's boy can get treatment.
Andrew has had more energy and has seemed happier. I swear that his belly is getting smaller, well at least squishier. The doctor said that you couldn't see results this soon. The ERT hasn't been given to severe boys yet and they don't know how fast or what you will see as far as results.

Tuesday, October 24, 2006 4:19 AM CDT

We finally did it. Andrew had his first infusion yesterday. He did wonderful. No problems at all. Karen, his Shire rep, was there and she bought pizza and subs for everyone. He was done in about 2 1/2hrs. He sat there and watched Winnie the Pooh and Stuart Little. He laughed pretty much through the whole thing.
Karen said that the reactions only occur during the infusion, at least the only ones that they have seen so far, and they have been only hives except for one boy. They are not sure what happend with him.
This is a day that we have waited for a long time. We will be going on Mondays for his treatments from now on.

Sunday, October 22, 2006 8:51 PM CDT

Tomorrow, October 23, Andrew gets his first ERT infusion. After many weeks of arguing with the doctors they have finally come to their sense and got on the ball to give Andrew his infusion. He will get it tomorrow at 10:30am. We are a little scared because this is the day that we have waited for a long time. Now that it is here it is a little scary. Some boys have had some kind or reaction. Most are just hives but one went into respiratory distress. Please keep Andrew in your prayers.

Friday, October 13, 2006 5:03 AM CDT

We are still waiting on ERT. This week the doctor is in a confernce in New Orleans. The insurance finally approved for the new hospital but only for 6 months. Now we need to find out what is going on with ordering the drug. Andrew's pediatrician said that she would order it if they don't get on the ball.
Andrew saw Neurology and he is starting to show signs of brain atrophy. The doctor doesn't think that it is hydrocephalus. Some say that you can't tell by a CT scan but he is one of the leading guys in his field and we trust him. He said that Andrew needs to be on ERT right now.
Cardiology said that his mitral valve is basically non-functioning. He cut his dose of enalapril down to once a day because he said that Andrew needs the pressure around his heart to help it with the back flow of blood. He also said that Andrew needs to be on ERT right now.
All of the doctors know this except the Genetics doctor. He better get on the ball.

Tuesday, October 3, 2006 4:55 AM CDT

We have not started the ERT yet. The Genetics doctor at Columbus Children's hospital is dragging his feet. He wanted some testing done. Well, we saw Neurology and Andrew is starting to have brain atrophy. The neurologist said that he needs to be on ERT right now. We saw Cardiology and Andrew's mitral valve is practically non-functioning. He said that Andrew needs to be on ERT right now. Andrew's pediatrician said that he needs to be on ERT right now. Why can't we get the genetics doctor on the same page? I have no idea but I have called the Customer Liason to see if they can light a fire under the genetics doctor. It just ticks me off that everyone, except the genetics doctor, wants Andrew on the ERT right now.
If the genetics doctor doesn't get on the ball soon then Andrew's pediatrician will see about getting the ERT through her office and having the drug company train her staff.
I just don't understand these doctors. Who do they think that they are.

Wednesday, September 13, 2006 9:47 PM CDT

We had our walk this past weekend. We had a pretty good turn out. We are still getting money turned in from people who didn't come to the walk. We have close to $2500. There were several other MPS families there. The sun was shining and it was a wonderful day.
It will be a while before Andrew can get his Enzyme Replacement Therapy(ERT). The doctors in Cincinnati Children's Hospital want Andrew to have a sedated MRI. Sharon told the doctor that Andrew can not have anesthesia because of his last reaction to it in Chapel Hill over 2yrs ago. The doctor told her that they are standing firm with this decision and that Andrew can not have the ERT until this test and others can be done. Sharon told him no. We have talked to the representative through Shire and they are checking into Children's hospital in Columbus. Andrew's pediatrician agrees with Sharon and thinks that she has made the right decision. There is no reason that Andrew needs to have these tests done. It will put us back a couple of weeks but will be better in the long run.
Please pray for Andrew and the other boys who are getting ERT.

Tuesday, August 22, 2006 6:41 AM CDT

Andrew had to start on some IV antibiotics a few days ago. He has been gagging and his heart rate has been up. His O2 sats were fine but his fingers were cold and his nail beds were purple. His doctor said that it is likely to do that with his heart condition. She said to give him some fluids just in case he was a little dehydrated and that was causing his increase in heart rate. Well, the next day he started to run a temperature so she put him on an IV antibiotic. After a few days now he has perked right up. Still not quite himself yet but he is closer to himself now.

Hopefully we will get a call that the insurance has approved the ERT infusion. We are still waiting. We are so happy that some of our little friends have been approved so far and are waiting to be scheduled for the infusion. Please pray that everything goes well for those guys.:)

Tuesday, August 1, 2006 7:17 AM CDT

Last week we went to the National MPS conference in Covington, KY. It was so nice to see old friends and to meet new ones. We had a party for the forum and there were at least 100 people there. It was nice to just sit around and talk to people who truley understand what you are going through.
Andrew loved going into the swimming pool. He just loves to get into the water. He sure did get a lot of head and back scratches. He gave out quite a few licks also.
We had so much fun. Can't wait until March when the next conference is.

Monday, July 24, 2006 11:07 PM CDT

Today the FDA approved ERT for Hunters syndrome. The boys should be able to start getting it within the next 30days. YEAH!!!!!!
We have prayed for this day for a long time and it is finally here. Words really can't explain how we feel except that this is the most happiest feeling ever.

Sunday, July 2, 2006 8:55 AM CDT

We just had a big family get together. My nephews are here from California to see their younger brother, Christpher before he leaves for Iraq. All of the boys are in the Army and the two older have been in Iraq already. This is the first time that all of the family has been together in the last 5yrs. I flew my nephews home in a top secret mission. Only a few in the family knew. We surprised my brother, their dad. We had a great time even though they were all crazy. HA HA HA.

Saturday, May 20, 2006 6:18 PM CDT

ERT did not get approved yet. There will be a 90 day extension. The problem is that they want to restrict the label so that no one under 5yrs old or if they are severe could get the ERT. Also, if it is a restricted label not any doctor can prescribe it. Shire and the geneticist believe that it will not take the full 90 days. We have to wait longer and it is not fair. These boys are deteriorating every day. The longer that we have to wait the more damage is done from the MPS. :( Please pray that the ERT gets approved soon.

Friday, May 12, 2006 9:24 PM CDT

Andrew went to the Cardiology doctor in Cincinnati, Ohio last week. The doctor said that his heart valves were not as "leaky" as they were last time. What does this mean? It means that the heart meds are doing their job. YEAH!!!!!!!
Afterwards, Sharon and Andrew went to see the infusion clinic. They said that there would be about 12 Hunter boys getting ERT when it comes out. They think that Andrew may be one of the first because he already has a mediport for infusions.
We should know by May 25h if the FDA approves the ERT for Hunters. Please pray that they approve it. If they do then Andrew will be gettingit before the MPS conference in Cincinnati, Ohio at the end of July. : )

Wednesday, April 26, 2006 10:28 PM CDT

Andrew has been doing pretty well lately. KNOCK ON WOOD!!! He went to go see his favorite doctor, Dr. Fitton. She has not seen him in a while since he has been getting his home infusions. She was very happy to see that he is doing and looking so well. Andrew had to hug and lick everyone in the office, even the new girl. She didn't quite like the lick.
In about 30 days we will know if the FDA is going to approve the ERT for Hunters syndrome. Please keep your fingers and toes crossed. If so then the Hunter boys may be getting the ERT before the conference in July.

Sunday, April 9, 2006 7:22 PM CDT

We just got home from St. Louis. We were there meeting some other families with MPS children. Sharon met with Shire, the drug company. They hope to have the ERT out by July at the latest. They hope to have FDA approval by late May. Please keep your fingers and toes crossed that it gets approved.

Andrew is a little tired but he really like visiting his buddy Kraig. :)

Wednesday, April 5, 2006 7:19 PM CDT

Andrew has been doing great this week. KNOCK ON WOOD!!!! This weekend we go to St. Louis to visit with other MPS families. We will be gone all weekend long. We are meeting at Dave and Busters. I hope that Andrew has some things that he can play with and have a good time.
We are getting excited about the conference in July. We will get to see friends that we have not seen in a while. It is always nice to be around other MPS families.

Monday, March 27, 2006 6:06 AM CST

Things are going good for Andrew. This past week we had a walk at his school and they raised $450 dollars to donate to MPS. The Pioneer school where Andrew goes is just great. They really like Andrew. This is the 3rd year that they have had a walk to raise money for MPS. The day before the local radio station wanted to do an interview about Hunters. Sharon had to work so I went to talk to them. We talked about what MPS is and the effects of daily living with MPS. They asked about a cure and I talked about the possibility of the ERT being released this year. They taped it and ran it several more times during the day.
This past weekend Andrew and Patrick got some new puppies. We only went for one but they were so cute that they got two. One is a pure breed black pug and his name is Eddie. The other one the neighbors dog got to the mother so he is a pug/ eskimo spitz mix and has the coloring of the brown pug and his name is Jack. I must say that Patrick does come up with some good names for the dogs. Hopefully, these ones won't disappear like Jasper the last pug. They let him out to go potty and they never saw him again.

Monday, March 20, 2006 7:56 PM CST

We are getting ready for this thursday when Andrew's school is going to have a walk for MPS. The kids will bring in donations and they will walk around the school for about 45 minutes. Afterwards we will have ice cream and prizes for the kids. Sharon is going to contact the local newspaper to do a story on the walk at the school. All of the kids have fun. It is going to be great. :)

Saturday, March 18, 2006 10:21 PM CST

Andrew came for a visit today. I just love when he comes. He was in such a good mood today. He gave lots of hugs and kisses. He ran around the house while he was watching his movie.
Andrew gets his IVIg infusion this tuesday. He has still been pretty healthy this winter. He hasn't had too many colds. We had a problem there for a while because they couldn't find the IVIg to give it to him. It took some searching and we found a company who will supply the medicine but it has to be done at home. His last infusion the nurse cancelled because they some new admissions to the home care that day. Needless to say we are upset about that.
Next week Andrew's school is having a walk for MPS. Andrew goes to a n MR/DD school and those kids sure do make a lot considering how poor the community is. Last year they made about $600. They are really good to Andrew at his school. There are a total of 3 kids with MPS at Andrew's school. The school knows about MPS and is really great.

Saturday, March 18, 2006 10:21 PM CST

Thursday, March 9, 2006 7:52 PM CST

On Tuesday Andrew came home early from school. He was not feeling good. He had a slight temperature. When Sharon came to pick him up at my house he was running around like he was not sick at all. Although, he did have a snotty nose.
The nurse called and said that she couldn't come and do his IVIg infusion tonight. He really needed it so, Sharon gave him his infusion. He could not wait another day or two until the homecare nurse could come. Sharon is a nurse and has given it many times.
Sharon is going away for the weekend and I get to have Andrew at my house for the weekend. I am so excited. I just LOVE having Andrew at my house with me.

Wednesday, February 22, 2006 6:11 PM CST

Andrew is doing so much better on his IV antibiotics. He just got his IVIg infusion yesterday. He should have a good build up of stuff to get this stuff gone.
The doctor put him on lasix three times a day instead of once a day. She wants to pull the fluid off gradually instead of a whole bunch at one time. He is not drenched all at once now.
Andrew went to school today since they had to change his needle. We will put it back in tonight and start the IV antibiotics again tonight. He will miss the rest of this week in school.

Friday, February 17, 2006 9:43 PM CST

Andrew has to go back on his IV antibiotics for 10 days. His mother had the flu and I have had strep throat. :( Sharon said that Andrew has been up most of the night. She took him to the doctor and she put him back on IV antibiotics. He is here with me because Sharon has to work for the next four days. Besides he like me better anyways. HA HA
Andrew now has his lasix doses split up into three times a day. The Dr. doesn't like that fact that he will be dry for a long time and then all of a sudden be soaked down to his knees. She wants the fluid to come off more often so that it doesn't cause a big problem with his heart. :(
The FDA has less than 100 days to decide whether or not they will approve the ERT for MPS II. Please pray that they approve it. All of the boys need this enzyme replacement therapy. It is not a cure but it will help with the symptoms of MPS.

Friday, February 10, 2006 8:38 AM CST

Andrew's infusion went better this week. He is looking pretty good. He has lots of energy. He didn't want to stay still while they were giving him his infusion. He was up and trying to run.
Tomorrow we are going to COSI to see the reptile exhibit. Patrick, Andrew's little brother, wants to go. He loves reptiles. He told his mommy that Andrew was going to have to move out of his room because Andrew would be scared with all of the snakes that he is going to get for his room. I don't think that is going to happen. Patrick wants a lot but doesn't always get. I think that Andrew really wouldn't care about the snakes but I am sure that his mommy will.
Andrew's health is holding steady. He is getting the IVIG infusions again and that seems to help him. Keep fingers crossed that the ERT (enzyme replacement therapy) is approved by the FDA soon and Andrew can start getting ERT.

Wednesday, January 25, 2006 10:00 PM CST

Andrew got his IVIG infusion yesterday. He only got 1/2 of it. He got fluid overload and they had to give him lasix because he started having breathing problems. Once they gave him the lasix he was better. He as 2lbs lighter at the end of the infusion due to the fluid coming off. He only got 1/2 of the infusion because the medicine is only good for 4hrs once it is mixed and since they had to stop it they couldn't finish the infusion. I guess that 1/2 is better than none at all. They will figure out what to do for the next infusion.
Andrew was fine today. He was a little tired since he was up until midnight. He gets prednisone before his infusion so he was a little spazzy once his infusion was done.

Sunday, January 22, 2006 7:42 AM CST

Andrew has been on an eating binge lately. He can't get enough food to eat. I am afraid that he might bust. HA HA. We went to the buffet yesterday and he ate his own plate some off of mine and some off of his grandma's plate. He would look at me and take a bite and then turn to his grandma for a bit. We finally had to stop feeding him, which made him mad. I am just glad to see that he is eating. Some days he will barely eat and then others we can't feed him enough, just like yesterday.

Wednesday, January 18, 2006 8:33 AM CST

Andrew went back to school last week. After his infusion he looks really good. He is full of energy now.He runs around while watching his movies. He will get his infusions at home and now they can do it after school and he won't have to miss any school.
On Sunday Andrew, Sharon and Patrick stayed the night. I was in my room checking out the MPS forum and here comes Andrew. He climbs into my bed and takes all of the covers. He is just laughing and laughing because he is on my pillows. When I get up to go to bed he scoots over onto his pillow. He is just the best to sleep with. He is just so cuddly and he wants to play with your hands and lick your hands.
We have been giving Andrew some motrin in the mornings because he seems a little stiff and then in about an hour he is up and running.

Tuesday, January 10, 2006 10:23 PM CST

Today Andrew's IVIG medicine was delivered at home and he got his infusion. It will be a few days before he can go to school. He was starting to slow down and look like he didn't feel good. He has been pale and winded. After his infusion Sharon said that he was up and running. Thanks you for all of your prayers. :)

Monday, January 2, 2006 7:38 AM CST

Happy New Years to everyone. I want to thank everyone for posting on Andrew's sight. I love the picture graphics. I wish that I was able to do that but an lucky to have done this much. :)
We are waiting to get Andrew's IVIG. The company who supplied it before said that they couldn't get it anymore and we have been scrambling to find it. We found it and they will be doing home infusions now. Andrew is on "house arrest" due to not having IVIG. The doctor doesn't want him to be exposed to anything. She said that a cold could get him very sick. He is happy though because he gets to watch the tons of movies that he got for christmas.

Thursday, December 1, 2005 9:21 PM CST

Andrew turned 8yrs old yesterday. We had Pizza, cake and ice cream at my house, Aunt Barbara. His Grandma got him a new Winnie the Pooh movie. He had it but the DVD got scratched and it would stop halfway through. This one has Casey the bird and he just laughs hysterically everytime that he sees the bird.
Andrew is doing very well. He was running and laughing all day yesterday. He must have known that it was his day. :)
He got his IVIg infusion today. The doctor came in to her office just for Andrew. The office had some sort of training and she wanted to do Andrew's infusion because he needed it with the cold weather coming.

Sunday, October 30, 2005 7:09 AM CST

Yesterday Andrew was sick. He was gagging and had the dry heaves and lots and lots of diahrrea. We had to call the doctor for some phenergan suppositories. He felt much better after drinking the gatorade. He was bouncing around again. He looked so bad when he was gagging and he just sat around on the couch. Those of you who know Andrew know that he is usually running all around. It is never good when he sits still. The doctor said that there is something going around now with all of the kids that she has seen. She said that if Andrew continues then we will hook up his IV and give him fluids.

Please pray for all of the MPS/ML kids. This has been a very rough month for the MPS/ML forum family. Many kids that we know are in the ICU and others have passed away. We need all of the prayers and support that anyone can give. THANK YOU.

Thursday, October 27, 2005 8:24 PM CDT

Andrew went Trick or Treating at COSI on saturday. He was Superman. It was funny to see him run and have the cape flapping behind him. He saw lots of his friends there.
Andrew saw Dr. Muenzer in Chapel Hill, NC. Andrew still is baffling to Dr. Muenzer. At least he keeps him on his toes.
Next week we leave to see everyone in Arizona for the MPS conference. See everyone there.

Saturday, September 10, 2005 8:17 AM CDT

Andrew went to his doctor on thursday for his IVIg infusion. He has been running a low grade temperature and she looked in his ears and said that they look "soupy" and put him back on IV antibiotics for 7days. He looked pale and she said that she didn't like the way that he looked or acted. So now here we are for another 7days we do IV antibiotics. Hopefully he will keep the needle in this time. Last time he pulled it out 3 times and he usually leaves them alone.
Andrew started school and he loves it. His teacher said that he is participating more this year. He will do the puzzles and play some with the other kids. This year the school has given Andrew his own aide. He doesn't share her with anyone else she is all Andrew's.:)
Andrew's MPS walk will be on October 8th in Chillicothe Ohio. Please come and join us. We hope that it will be a fun time for all.

Friday, August 26, 2005 11:46 PM CDT

Yesterday Andrew had to go see the heart doctor. He now has an event monitor. Last weekend his lips turned blue and his fingertips were blue and he was cold. We checked his pulse ox and it was normal but his heart rate was over 200. The doctor said that it is heart related. She said that he is going into arrythmias and that they could be fatal.
Please keep Andrew in your prayers. Hopefully this is something that they can monitor and maintain as close to possible a normal heart rate.

Wednesday, August 24, 2005 9:42 AM CDT

Today is Andrew's first day of school. He was playing on the porch waiting for the bus and when the bus pulled into the driveway he started jumping up and down and clapping his hands. He ran out to the bus and climbed into his seat. I guess that you could say that he was excited :)
On Saturday Andrew had an "episode" with his heart. His lips were blue and his fingertips were blue. We took his pulse ox and it was 98% but his heart rate was 208. We checked again in a few minutes and then it was normal and the blue went away. Sharon took him to the doctor and she wants to put a heart monitor on him to see what is going on. It is definately heart related.
Also on saturday we went to the funeral of Andrew's friend Danny. He has MPS II and went into heart failure during some testing where he was sedated and they couldn't get his heart started. Please keep Danny's family in your prayers.

Saturday, July 30, 2005 8:13 PM CDT

Andrew went for his IVIg infusion on thursday and the doctor said that he still had an ear infection. She is calling his ENT doctor to tell him to put the tubes back in. While at the doctor she listened to his lungs and he had fluid in there so she hit him up with a double dose of lasix to dry him out.
He will go to see Dr. Muenzer in October with his bestest buddy Kraig and his mommy Kris. They like to go at the same time.
Andrew is just so happy go lucky. He has enjoyed staying with me at my new house while his mommy works. He likes to sneak from his room and come to mine and climb into bed with me. He just get into the bed and curls up with the blankets. He is a blanket hog. HA HA. He loves the new house because he can run all the way around the bottom floor. From the kitchen to the dining room to the living room and back again. He likes to run and have me chase him. I usually run the other way to catch him.
Everything is going very well for Andrew right now. KNOCK ON WOOD!!

Thursday, July 14, 2005 9:35 PM CDT

Today Andrew went for his IVIg infusion. The doctor thought that he was acting "grumpy" and checked him out and sure enough he has a huge ear infection. She started him on IV Leviquin for 10 days. Here we go again with the IV's. He usually doesn't bother the IV at all but all day today he has picked at it.

Sunday, July 10, 2005 8:17 AM CDT

Andrew has been doing good this past week. He has just been so happy and just trucking along. He has not had any breathing problems at all. However, his brother Patrick has been having a big problem with his breathing. He has been put on steroids and antibiotics. He has been doing daily breathing treatments on him. I guess no one told Patrick that Andrew is suppose to be the sick one. :)

Friday, July 1, 2005 1:21 PM CDT

Andrew went to the ENT doctor the other day and he said that his tubes were out. They were in the canal so he just picked them out. He said that he would see if he needs to have them put back in or not. He would wait and see if they closed on their own. Well, Andrew went for his IVIg infusion and he has an ear infection and has fluid behind the ears so he needs the tubes put back in.
Andrew went to Cardiology today and the doctor said that his heart still looks the same as it did in December. He does not need to see him until after his birthday in November. He could barely hear his heart murmur this time. He said that Andrew looks good. The bad news is that he is moving to Texas and Andrew will get another doctor. He wants him to see the doctor that does the heart transplants and takes care of the kids with the valve problems. I guess we can teach him too all about MPS. :)

Wednesday, June 22, 2005 6:56 PM CDT

Ok I know that it has been a while for an update. Well , here it is.
Andrew had been doing quite well. He has been getting his IV's and doing just fine. He has been getting summer therapy since school is out. Although on Monday he became gray and passed out during his therapy. The doctor thinks that it is his heart. The EKG and bloodwork was ok. He just likes to keep us on our toes. HA HA.
He is seeing all of the Specialists for his yearly checkups.
He still loves his Aunt Barbara better than his mother. He loves to stay with her and now he can now that summer is here.

Sunday, February 27, 2005 8:40 PM CST

Andrew got some news from the cardiologist this past week. His heart has not gotten any worse in the last 3 months. It is exactly the same as it was the last time that he was there. He said that there isn't anything that he can do for Andrew except adjust his heart medicines. He bumped the doseages up. He said that if Andrew did not have MPS then he would be on the heart transplant list by now. MPS really sucks!!!!
On friday we are going to a piano recital and the money is going to the MPS. We can't wait to see Taylor and her mommy Rachel.
Then on saturday we leave to go to St.Louis for the Klenke bowl a thon. We can't wait to see our buddy Kraig. Maybe we might even get a strike or two.

Tuesday, February 15, 2005 7:07 PM CST

GOOD NEWS!!!! It is not Andrew's heart this time. The doctor said that he has a sinus and ear infection. She thinks that he has something viral also. She has put him on oral antibiotics this time instead of the IV antibiotics. She is afraid that if she keeps putting him on the IV antibiotics that he will become resistant to them. Thanks everyone for thinking and praying for Andrew.

Monday, February 14, 2005 12:42 AM CST

Andrew has been sick this past week. He has been coughing a lot and the doctor thinks that it may be the fluid around his heart. He woke up saturday morning about 4am with a temperature of 102. The doctor is worried about him running a temp. She started him back on his IV antibiotics. Sharon had two doses at home for him to get but he is going to see the doctor today. Hopefully it is only a sinus infection and not the fluid around his heart.

Tuesday, February 1, 2005 11:25 AM CST

Andrew has been fighting off a cold lately. He has been very "gaggy". He went to the doctor last week and she said that everything looks fine so far as drainage.
The doctor was really worried about his heart and his O2sat. He was running 1002 but his pulse was low at 60. She wants us to keep records of it so that she can see if possible he has too much heart medicine in his blood stream. Andrew has been looking run down lately. He is getting more pale. He looks so white like a ghost some times. He will run and jump and laugh while watching his movies but then he will sit down and look so tired. He gets his IV infusion this Thursday. Maybe that will give him the boost that he needs to kick this cold.

Tuesday, January 18, 2005 8:08 PM CST

I know that it has been a long time since an update. Andrew has been doing relatively good. In December we went to the MPS conference at Disney. We met lots of friends there. Andrew got sick while he was there. The day after we got home he was placed on IV antibiotics for another sinus infection. Andrew is still getting his IVIg every two weeks.
When we saw Dr. Muenzer in Chapel Hill,NC he thought that Andrew's MRI showed signs of hydrocephalus. When we got home we went to a local Neurologist and he feels that it is just the MPS in the brain. He put Andrew on medicine to see if it would help and it didn't so that made him think that it was the MPS. He has followed Andrew every three weeks and there have been no changes in the MRI scan so he believes that it is the MPS.
Andrew's doctor has placed him on oxygen for when his O2 sat gets below 90%. She wants to use the oxygen with the albuterol to open up his aveoli in the lungs and get the oxygen circulating. Andrew was coughing at the last appointment, 2weeks ago, and she feels that it is fluid building around his heart. She gave him a big dose of Lasix to get the fluid off.
Andrew just got back from UNC for a sleep study. We are waiting on those results now.
Andrew is so happy and running and jumping as he usually does. Someone needs to remind him that he is sick. HA HA.

Sunday, November 7, 2004 4:04 PM CST

On Friday November 5,2004 Andrew was started on another heart medicine. We had to go to the doctor's office and he had to have his blood pressure checked every 15 minutes to make sure that he didn't bottom out. His blood pressure took a little bit of a dip but then came back up. Thank goodness that he didn't have a reaction to that.
Andrew sees a neurosurgeon on Wednesday to see about the changes on his MRI from North Carolina. Dr. Muenzer feels that his increased ventricles are due to the progression of the MPS and not from hydrocephalus. He said that too many MPS children are getting them and may not need them. Andrew's pediatrician, Dr. Fitton, said that he couldn't get a shunt with his low immune system because it would be infected all of the time.
Andrew seems to be doing a little bit better with his new heart medicines. He doesn't look as tired as easily anymore. He sure seems to have the energy of the "Energizer Bunny". :)

Sunday, October 24, 2004 8:07 AM CDT

We just returned from Chapel Hill North Carolina. We saw Dr. Muenzer and he is so wonderful. Andrew did well with all of his testing until thursday. He had to be sedated and intubated to do the MRI. When Andrew was finished he went into respitory distress. We were in the PACU for more than 3 hours. They gave him 3 albuterol treatments, a mixture of epinephrine in nebulizer form and a shot of trabutolene(sp?). He was breathing so hard and they brought another intubation tube to the bedside because they were afraid that they were going to have to re-intubate him. They were afraid that he would tire out from trying to breath. Finally after the last breathing treatment he cleared up. It still took him 2hrs to do that but he was much better then. We left the hospital around 4 pm and Andrew finally fell asleep around 6pm and slept until 10pm. He went right back to sleep when we went to bed at 11pm. He was just so tired that night. The next day he was up and running as if nothing ever happened.

Sunday, October 17, 2004 4:54 PM CDT

These past few weeks have been very busy. We had a walk at Andrew's school for MPS. The school has about 96 students and raised a little over $600.
We had a 5k Walk/ run in Columbus. There were 4 other MPS families there. Two of the families have had children who have passed away from MPS already. One of the children is receiving Enzyme Replacement Therapy for MPS. We raised a little over $1900 that day. Andrew had lots of fun. He ran and played on the playground that was there. By the end of the walk Andrew was very tired.
Andrew gets tired more easily now. He will run and run until he gets short of breath and becomes cold and clammy. When he gets this way we have to put him in his stroller to keep him from running. Our fear is that his heart function is getting worse. We go to North Carolina on Monday 18th of October. Andrew is in the Natural History study and will have testing from head to toe. We will see Dr. Muenzer and have lots of questions for him.
Andrew will be 7yrs old on November 30. He is very happy and very loving. At the MPS picnic he was giving out hugs and kisses to all.
He enjoys watching his movies. Winnie the Pooh and Tigger are his favorite. He started watching Charlie Brown and he laughs at Snoopy and Woodstock.
He is still receiving his IVIg every 3 weeks. The doctor is worried about his low white blood count She feels that they may have to keep him home from school and give him his IV every 2 weeks. This last time they gave him IV Lasix because he was 8lbs heavier than the last time that they gave his IV. They gave him the Lasix and he was down 6lbs the next day.
Andrew goes to school M-F this year. He is happy to see the bus in the morning. He jumps across the porch and runs and gets on the bus. He is just as happy to get off of the bus when school is done. He gets off of the bus and runs into the house and turns the T.V. on.

Friday, August 6, 2004 10:06 PM CDT

Ok, Ok, I know that it has been a while since the last update but, no news is good news. Andrew has been doing fine since the last update up until about a week and a half ago. He has been running a slight fever on and off. He will spike to about 101 and then it will go back down to about 99 but it will never break and stay down. He is eating and drinking ok. It seems like he is swallowing hard when he does eat or drink. He is still happy and running around laughing and jumping so it isn't effecting him at all. Just a little puzzling.
Andrew is scheduled for his next IVIg infusion on Aug. 17th.

Sunday, June 20, 2004 7:32 PM CDT

Ok, in my first post I made some spelling errors. Andrew has 52 f his heart that is working and he is 85 eaf.

Andrew was very active today. I went to his house to put up a swing set for him and his brother. Andrew was running and the kids had to catch him. He just laughed and laughed and thought it was a game. He got tired pretty easily and went inside to watch movies.

Andrew's IGg levels are where the doctor wants them to be. She said that they are really good and we do not need to add any medicine due to his weight gain.

Saturday, June 19, 2004 10:26 PM CDT

This web page is about my nephew Andrew. When Andrew was 3 1/2yrs old he was diagnosed with MPS II or Hunters syndrome. Basically, this is where the body is missing an enzyme and can't break down the cells so they start to accumulate in the body. This is a progressive syndrome with no cure. Dr. Munzer, from Chapel Hill North Carolina, is working on an enzyme replacement therapy. This is still in the experimental stage.
When Andrew was diagnosed the genetics doctor told us to take him home that there was nothing to do for him and he would be dead by the age of 5. Andrew is now 6yrs old. He is starting to have some heart problems. He only has 52f his heart working. Some days he is the energizer bunny and other days he is very tires.
Andrew is 85eaf and wears hearing aides. He also has another disease called Common Variable Immune Deficiency. In other words, he has a low immune system. Andrew has a mediport and receives IVIg infusions every 3 weeks to keep up his immune system.
Andrew loves to watch Disney movies. His favorite is anything with Tigger. He jumps up and down like Tigger. He is starting to like other movies now that he is getting older. He likes Scooby Doo and Snoopy now.
This is the first entry into the journal. I will add more and post more photos as I learn to do so.

Wednesday, June 16, 2004 9:54 PM CDT

This page has just been created. Please check back for additional updates.

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