History

Sunday, October 9, 2011 5:38 PM CDT

Hi Friends

I hope you all are doing well! I am sorry these updates are few and far in between but in the world of social networking I believe most everyone who has followed Scotty is on Facebook but for those who aren't I don't want you to think I have forgotten about you and everything you mean to Scotty and our family so I am trying to be better about updating here.

Scotty is doing wonderful! Our little boy just turned 14 on Sept 29th. I guess at some point I am going to have to stop calling him our little boy. We had a small party with some family and close friends and he had a great time.

On the last update I forgot to mention that we have a new family member and her name is Corky. She is a tiny yorkie who is Scotty's Emotional Support Service Animal. She goes everywhere with us including Scotty's weekly treatments at the hospital! She is great fun and Scotty really enjoys her.

He has been back to school since mid August and is enjoying himself. We kept him in 8th grade for another year since he is so much younger than the others. He still has friends from last year in the class also new ones. His teacher and aides say he really is having fun in class this year.

I am still working on getting Scotty's home infusions at home. Our Insurance has denied this so I am preparing my appeal. I hope I am successful in winning this battle but if not I will not be totally heart broken as our hospital is very close and we have great nurses who love Scotty very much and have become our friends.

Thank you for checking up on our Scottyman! Please to remember to sign our guestbook so we know you have been here.

Many Hugs,
Kim

Sunday, March 6, 2011 4:38 AM CST

Hi Friends

Wow I am completely slacking on these updates!!!! I am sorry.. I am going to try real hard to do my updates more often. I guess you can also look at it as no news is good news :)

Scotty is doing great overall. We did seek 3 opinions regarding his back problems and surgery was suggested each time but they also stressed how risky the back surgery would be for Scotty. The bottom line is Tom and I have decided that we would not take that risk. We have been giving Scotty anti inflammatory med and this has seem to take away his discomfort. His discomfort/pain has never been so bad that we had to give him a pain med so this is a good thing.
Scotty's weekly treatments are still going well and we are still doing them at our local hospital. We have been working on possibly doing the treatments at home but we have been running into some road blocks with our Insurance. We'll get there one day but in the meantime we love all our nurses at the hospital.

Thank you all for stopping by to check up on Scotty.
Kim

Tuesday, September 28, 2010 0:45 AM CDT

Hi Friends

HAPPY HAPPY 13TH BIRTHDAY TO OUR LITTLE SCOTTYMAN!

On Wed the 29th Scotty will offically become a teenager. It truly seems like yesterday that we were blessed with Scotty's birth. I just don't know where time goes anymore... in fact I just want time to stand still but I know it's not possible so we will continue to celebrate every day that we have with Scotty. Everyday is a birthday!

We will be celebrating Scotty's birthday in So. CA at our annual National MPS Family conference at Knotts Berry Farm. Our conference is Thursday thru Saturday night and we will finish the weekend with our annual LA walk/run Sunday morning inside Knotts Berry Farm before it opens to the public. We have to leave for So. CA tomorrow (Tues)because I will be in our Board Meeting (for the MPS Society) all day Wednesday (Scotty's Birthday)before our Conference begins Thursday. I know Scotty will have a great day hanging out with dad until our board meeting is finished then we will celebrate his birthday with our mps family. I am so looking forward to this conference and seeing all our mps friends.

It has been a very emotional month as we have lost 2 of our Hunter friends. We flew up to Portland last Saturday for a memorial for our friend Devon and flew back home Sunday. These memorials are so hard... thank goodness for our mps friends that were there.. the mps bond is truly like no other.
This is the link for a slide show for our friend Devon.
http://www.youtube.com/watch?v=dqFFPqPwlGk
Yesterday we just heard that our friend Josh also passed away. So heartbreaking :(

May Devon and Josh rest in peace. We are going to miss you little buddies.

We continue to search for answers for the pain in Scotty's back. We did see the specialist at Children's Hosp. Oakland and their only recommendation was we do spinal decompression surgery for Scotty..... Tom and I do not feel the area they want to decompress is the orgin of Scotty's pain therefore we are not chosing to do the surgery. This is a very scary surgery and we just do not want to take our chances. We are exploring other options with meds that have been suggested to us. Hopefully we will start seeing some results of the new med soon. Scotty is not in constant pain but he lets us know when he is!

Treatments are going well... dare I say that we are in the process of trying to switch to home infusions! Our Ins. is taking forever to check Scotty's eligibility and at this point I am not really pushing them because we are quite happy at our local hospital but I know doing the treatments at home would be some much easier for Scotty.

School is going great for Scotty. He is still going fulltime and doing well. He loves his classmates, his teacher, his 1:1 and the other classroom aids. I am keeping my fingers crossed for a very quiet school year.

Well I have to finish packing so I must sign off. Thank you all for continuing to check up on Scotty again, it means the world to us that Scotty has so many loving friends.

Hugs,
Kim

Thursday, August 12, 2010 1:23 PM CDT

Hi Friends

Wow I have been terrible about keeping Scotty's website updated. I am sorry. He has been home almost full time with me since last February after he got sick and began having issues with his walking so finding the time to update was a little difficult. I hope with Scotty returning to school full time yesterday I will be doing a much better job of updating. I can't believe school has already started! It seems like school just let out. I think Scotty is really going to enjoy his class this year. There are a few more kids in his class this year which is great for Scotty and his socialization. He knows his new teacher because he would visit her class in the afternoons last year. She has been teaching special ed for many years and all the kids love her. Scotty also has the same 1:1 aide as he did at the end of the school year, her name is Donna and she is very good with Scotty. There are also 2 other aides in the classroom who seem very nice. I believe with Scotty being familiar with everyone and his surroundings that he should have a pretty good school year.

Our summer was short and sweet. Scotty did not attend summer school. Because he is in Jr. High he is suppose to go to a High School for summer school which I was not thrilled about but thought I would give it a try. I took him the first day and never took him back. Some of the other kids were 17 yrs old and I just don't think Scotty should be in the same class with them so I kept him home with me. We did make a quick trip to Seattle, I had a board meeting but there was also a MPS Family meeting given by Seattle Children's Hosp at the Zoo so Tom and Scotty attended that meeting. They got to visit with all our friends that we normally see at Camp Prime Time which we didn't attend this year so it was nice for Tom and Scotty to see them. We also just returned home from a 5 day camping trip with our wonderful friends Sherri and Greg. We took our trailer which is Scotty's second home. He is very comfortable in the trailer and we never have any issues with him being away from home. We just relaxed the whole 5 days. One day we did take a 3 hour ride on the lake on a party boat. Scotty had so much fun. I will put up some pictures on his slide show.

Scotty has been doing well but we are still having issues with him walking since he got sick (or hurt) at the beginning of the year. We will finally be seeing 2 Doctors at Oakland's Children's Hosp in the Neuromuscular clinic at the end of this month. We still are not sure what the problem is ??? whether it is the herniated disc or spinal cord compression. Hopefully they will have some answers for us at this appointment. Other than that Scotty has been his very happy self. Still laughing and smiling which is all we can ask for.

Thank you all for checking up on Scotty.
Hugs
Kim

Wednesday, May 12, 2010 5:35 PM CDT

Hi Friends

I have finally made it back to give you an update on Scotty. Scotty is doing great, in fact he just started back to school 3 hours a day in the morning. He has been home since he got sick at the end of Jan. I know he is enjoying seeing all his friends again.

We did see another Orthopedic Dr. at Oakland Children's Hosp for a second opinion about 2 weeks ago. This Dr felt that Scotty's issues were definitely spine related and have referred us to their Neuromuscular clinic. Unfortunately this clinic only happens 1 Fri a month and our appt is scheduled at the end of next month. I hate the wait but the clinic is ran by 2 great Doctors (an Ortho Dr. and a Neurosurgeon) who see you together and have a lot of experience with MPS patients. So... we will wait. Scotty can walk but still does not like to initiate it himself so we are constantly making sure he gets up and walks around.
Scotty had a swallow study done I guess a couple of months ago that consisted of him swallowing liquids only. The results of that were good. We will be doing a modified swallow study at the end of this month at Stanford.

May 15th is National MPS Day! I hope that you will all remember to wear purple in honor of our MPS children!

Many Hugs,
Kim

Saturday, April 3, 2010 3:29 PM CDT

Hi Friends

Sorry it has taken me so long to get back here after my last journal entry which was a little scary! Scotty developed another issue shortly after that update that added to our mystery of what happened... the left side of his face almost seemed paralyzed! His whole left side of his face drooped and when he did begin to laugh again only the right side of his mouth went up. He would drool out of the left side of his mouth which he had never done before and he also would only chew his food for awhile then just let it sit on the sides of his mouth..it could be there for hours. I am not sure what happened to cause this... it almost seemed like a small stroke or something like bells palsy. Whateverrrrrrrrrr it WAS it is gone now! Scotty is almost back to 100aseline but there is still some issues with his walking. He can walk fine most of the time but he doesn't seem to want to iniate it. Maybe he is remembering the pain from what happened and doesn't want to walk for fear of the pain again it? He is fine first thing in the morning when we believe he has rested and layed flat all night. The problem seems to happen after sitting for any lenght of time and he stands sometimes his legs get weak... I believe they are numb from possibly a pinched nerve and he just doesn't understand it but we still need this figured out so I have requested a second opinion through our insurance with an Ortho Dr. at Oakland Children's Hosp. They see so many MPS children and do so many surguries there with them that I want to see what they may have to say.
We are just so happy that he has recovered so well... we just didn't know if he had a new baseline and we were very scared. He quit everything...walking, laughing, smiling, even playing with his fish toy :( so to have him back is the biggest blessing we could ever ask for! I will update again after we see the Dr. for a second opinion.
Thank you so much for continuing to check back and check up on our precious Scotty.
We hope you all have a Blessed Easter.
Many Hugs

Thursday, February 25, 2010 7:36 PM CST

Hi Friends

Well I have to tell you all that this has been one tough month for our little Scottyman :( Things have happened (which we are not sure are permanent) to our little guy that have caused a lot of pain for him and heartbreak for us. One morning at the end of January he was fine and after a quick bike ride on that same day in his bike trailer he was sick! When I got home I noticed he was very pale and falling asleep at the drop of hat. We thought he had a bug and/or possibly a constipation issue because he also did not want to walk. This happened on Saturday and by Sunday night we had given him some prune juice which produced a quick bm that night. Monday morning he was doing so well that I felt sent him to school.. he walked out to the bus that morning by himself and was fine but by the end of the day his teacher had called to say something was wrong that he was in pain and he couldn't stand. I immediately picked him up and took him to the ER.. we had xrays done that night and saw no bowel or gas issues or anything else but he still could not stand without pain. After trips to his Pediatrician and back to the ER that week and Sutter Gould for xrays and scans we still did not have an answer and Scotty was no longer eating, standing or even able to stay awake. We knew he needed a MRI of his back which required sedation so we decided to take him to Stanford's ER on Superbowl Sunday... I knew they would admit him and that is where he stayed for the rest of the week. We saw everyone from Neuro, Ortho, Genetics, P/t and the final conclusion was a herniated disc or inflammation. The great news was every test or xray they did showed very little or no change at all since the last time the same test was done which was over a year ago. The MRI was of his whole spine and brain (also looking for high pressure), I requested a new Echo and EKG be done since the last ones were over a year old and

Scotty was discharged late the following Friday night and has been home ever since (no school). He does not have the pain when he stands or walks but still requires help when standing and walking. I can only think that he is weak from the 2 weeks of not eating, walking and sleeping the whole time. It was just so baffeling to see him fine one morning and sick in the afternoon???? They sent us home with some pretty strong Ibuprohen which we've really only given to him a couple of times because the pain seems to be gone but obviously the weakness seems to continue. He is starting some home schooling next week. I just felt this was best until we could get him back to his baseline. He only missed 1 treatment ... we had one done while at Stanford and he has done 2 here at home since this has started. There doesn't seem to be any problem with his treatments so we will continue them but he does have a couple small issues still going on that I will talk to his pediatrician about tomorrow. They tell me not to worry about these other issues until I feel he is back to his baseline but maybe this is has new baseline?? I will give it a couple more weeks then maybe follow up with Stanford again or email his Doctors there in the mean time. It's so very frustrating when our little guys can't tell you where they hurt or what's going on. The sedation for the MRI was very scary... I think he was gone for almost 4 hours~! They said it took 2 of their Sr. Anesthesiologists (of course who we spoke with quite a while before sedation) over an hour to intubate... I was so worried that they were going to tell us no more sedations but they just said be aware they are taking longer and longer... (duh) but he could still be sedated.
It's been a long month but we are working very hard to get our little man better. He has a great Physical therapist that has been working with him close to 2 years and she knows him well. He is seeing her twice a week right now to build up his strenght.
Please keep him in his prayers... and I promise to keep you updated on what is going on.
Thank You so much for checking up on Scotty.
Hugs and Much Love
Kim

Thursday, February 18, 2010 2:26 PM CST

Hi Friends

Tuesday, February 2, 2010 10:54 PM CST

Hi Friends

Wow I have seriously neglected my updating duties! I am very sorry. These last couple of months have just flown by... I think there are many things I have neglected.
Our trip to Orlando for the MPS Family Conference was awesome. We got to see so many of our friends and finally get to meet some of our new friends face to face for the first time. It was great. Scotty did so well on the trip.. absolutely no problems with any of the flights or anything. We spent an extra 3 days after the conference in Magic Kingdom and Epcot and that was so much fun. I am sure I enjoy it more than Scotty :) but he is always a trooper and goes with the flow. One of these days when I finally download the pictures off my 2 cameras I will put them on a slide show here. We arrived home 2 days before Christmas and things have been crazy ever since.
It just seems like one minute I think I have everything under control and the next minute everything comes crashing down. I guess it is just the same stuff different day if you know what I mean. "The MPS World"!

Scotty has been doing great. Everything is going well with his treatments and we are very happy with our local hospital. They just spent so much time preparing for Scotty and his treatment and they all love him so much. From the moment we arrive in admitting, to the whole pediatric floor and our wonderful friends in food service they make sure Scotty is well taken care of. We do miss our friends at Stanford LPCH and hopefully we will be seeing them soon when we see all of Scotty's specialists for his annual visit. We are just waiting for the referrals so we can make those appointments.

In my crazy world I am sorry that I haven't been to visit our friends caringbridge sites lately but please know that I think of you all often. I pray that all is well with you and your families. I will visit soon and catch up with everyone.
Thank You for your continuous love and support. From the bottom of our hearts we truly appreciate it.
Many Hugs
Kim & Scotty

Saturday, December 5, 2009 6:17 PM CST

Hi Friends

I hope you all had a wonderful Thanksgiving. We had a great Thanksgiving spending the day with our very good friends. Lots of great food, fun and most importantly time with friends and family who mean so much to us.
Friends and Family who we are so Thankful for.

Everything here has been going great. Scotty's treatments are going great and we are so thankful every Thursday when we make that 10 minute commute to our hospital. The quality of life for little Scottyman and all of us has improved so much with local treatments. I actually played on a kickball league which all our games were on Thursday night. Scotty loved watching us adults kicking and chasing that big red ball! Lots of times falling (aunt Kelly) and thinking that was sooooooo funny. I could never of done this before.
I have also got back into playing golf and a couple of weeks ago I took Scotty with me while we played one game. He and I in a golf cart was so much fun! He was perfect and just sat in the cart the whole time or would get out when we decided he needed a stretch. He also rode with his Aunt Kelly which he loved.

We are trying to get into the Christmas spirit today and I think it is working. Tom has been sick for the last week but today he is out putting up our decorations while I worked on Christmas cards. I will work on indoor decorations tomorrow (after I golf lol). Although Scotty doesn't understand Christmas I know he enjoys seeing all the decorations. He was suppose to see Santa Claus yesterday on a class trip to the mall but he just began sounding a little crunchy like he is trying to get his daddy's cold so I made the decision to keep him home. He's doing ok today but I have started some breathing treatments. I can't take a chance of this turning in to a full blown chest cold because we are leaving for our conference in DisneyWorld in less than 2 weeks! I have kept him inside today and nice and warm. I know he wants to go outside with daddy and it's hard to keep him in but he has to stay well.

There really isn't much more going on with us right now. I hope you all are enjoying your holiday season! I love Christmas time but at the same time it is very hard with a special needs child. You want to shop for them but there isn't a lot he's interested in and you can only have so many movies.....we have every Barney & Disney movie made! Then you see all those children shopping looking at all the toys they hope they are getting for Christmas... it gets a little tough. But I (we) always get through it and going to DisneyWorld and seeing all our wonderful MPS friends is going to be the greatest gift for all of us.

Scotty will always be the greatest gift in the world to us as I know all your children are to you. I love my little Scottyman more than life itself....he is our life.
Please remember to pray for all our friends who have lost their children.

Stay well and I promise to update as soon as we get home from DisneyWorld with lots of photos.

Love,
Kim

Monday, October 26, 2009 10:14 AM CDT

Hi Friends

What can I say... I am becoming very bad at updating Scotty's journal :( Bad mommy!
But you can always rest assure that no news is good news. Scotty has been doing great...treatments are going great and he's loving school. Scotty celebrated his 12th birthday at the end of September. I think we arrived home from NC the day before his birthday. After we arrived home and got settled back into our routine we just ended up with a very low key birthday... although I have to tell you that he celebrated his birthday many times between his pediatrician's office and his wonderful nurses at the hospital and our friends.

We had a wonderful trip to Banner Elk, NC at the end of Sept for Nathan's Walk/Run. We had such a great time visiting with Nathan, Rebecca and their entire family. We loved them all so much and it felt like we had known them forever. They all knew of Scotty through Rebecca and when they got to meet him they just poured out their love. I have to tell you it was very hard leaving them all to come home. We got to spend time with Nathan which was so nice.. we just love him so much. Unfortunately the day of the walk/run it was raining but that surely didn't stop the community of Banner Elk from coming out to support Nathan and MPS. Rebecca's sister in law who lives in FL was the organizer of the event along with some very good friends of Rebecca's volunteering their help and Terri from the MPS Society. They all did such an awesome job! I will hopefully be uploading some pictures from the walk/run and our trip soon. Scotty did so great on that trip... the plane rides were perfect and there was never a minute he wasn't smiling the whole trip..
Tom, Scotty, my sister Kelly and I also attended the LA walk/run last weekend... what a great time. Tami works so hard for so long organizing this event. She did an awesome job as always. The weather was quite the opposite of NC.. it reached 100 that day and we were all very hot. Thanks to Tami's craziness... after the walk/run and the MPS family meeting she then holds a barbecue at her house .. craziness but the kids have a wonderful time playing video games and swimming. Of course us adults have a great time of our own......drinking margaritas!
This year at Tami's walk/run we met the nicest couple ever... Pam and Andy. Their daughter Carolyn had MPS III and passed away about 6 months ago. I think seeing the MPS children was very therapuetic for them. I can't wait to see them again next year.
We are now getting very excited about attending our MPS Family conference in Orlando in Dec. We are taking an extra 3 days to go the parks after the conference. I love Disney World during Christmas time:) I know Scotty is going to have a great time.
Well I have to go wake up my little Scottyman... check back for new photos of NC and LA soon.

I have this great idea and keep forgetting to journal it. I love this old style of Caringbridge because the graphics that I can use but what can't be done is Scotty's friends to receive notifications via email that I have updated his journal. So I created a new caringbridge site for him at www.caringbridge.org/visit/scottwhitecotton so if you'd like to subscribe to that one and get notified of updates which I will do at the same time of updating his old one... pretty smart. I won't be journaling on it except changing the date to trigger a email notification to those who may want to subscribe. I like getting them on our little friends. Hopefully this makes sense and may save you time of checking in when I haven't updated in a while... bad mommy.

Hugs to all of you.
Kim

Friday, September 25, 2009 8:10 AM CDT

Hi Friends

I am so sorry for the delay in updating Scotty's journal. Just always remember no news is good news :).
We ended our summer with a trip to our favorite place... the coast. We had a wonderful time relaxing at the beach.

Scotty started back to school at his new Jr. High and is doing great. We had a few issues in the beginning but we had a meeting last week and we are working through them. We are to meet again within 45 days to reassess and I am confident things will be fine. He has a great teacher who is young and energetic.. they do a lot of singing in class which Scotty loves and usually every Friday they go out in the community. He still has his wonderful 1:1 Aide Elvia so he is very happy which is our number 1 priority.

Scotty's treatments are going great. His port accessing is absolutely no problem, in fact these last two accesses Scotty hasn't even flinched so I am hopeful that one day the words "home infusion" will be a reality for us. His pediatrician and I even spoke about it last week.. she thinks after local treatments for a year and that he remains reaction free that this could be a consideration. Not that I am in any hurry with our local hospital only being 10 minutes away but I don't want to be going to the hospital foreverrrrr.

I am writing this update from Banner Elk, North Carolina. We flew in yesterday to visit our very good friends Rebecca and Nathan (www.caringbridge.org/visit/nathanbivens ).
Tomorrow Nathan is having is very first MPS walk/run and we wanted to be here to support them. Scotty did so wonderful on the trip... he flew across country and he was still laughing last night after 6 hours of flying and 2.5 hour car ride.

Well I have to get going but hugs to all of our friends who are still checking up on our Scottyman.
Kim

Thursday, August 13, 2009 7:49 PM CDT

Hi Friends

I hope you are all doing well and enjoying your summer. Can you believe summer is almost over! Gosh the holidays will be here before we know it. yikes

Scotty's treatments are going great. I think on my last update I had mentioned the problem we were having with accessing Scotty's port and my thought that we just kind of needed to regroup. That's exactly what we did 2 weeks ago... I asked my sister Kelly if she would please come to the hospital when they accessed Scotty so she could help me with my plan of keeping Scotty calm and to help hold him when they were accessing his port because she had done this several times before. There were fewer people in the room and the pic nurses did not wear any shields when they accessed him and low and behold one quick stick and he was accessed. Today we did the same thing but Kelly was out of town so Tom came and helped hold Scotty and the stick was so quick I didn't even realize they had done it! When I am holding Scotty down at his legs I always turn my head and not watch the stick so I heard him make a little noise but I thought they were still feeling his port but nope the needle was in and they were done. Scotty did awesome and so did the pic nurses lynn and Theresa!
We just love everyone there at Memorial they are so great.
They were/are so prepared for Scotty that it was almost worth the 2.5 yrs of commuting (almost). I mean he has his own Rapid Response Team! Each team member always makes sure to stop by and see him on Thursdays.
I have to tell you the strangest story.. maybe I have before but of the 2.5 yrs we were commuting Scotty never ever slept on the way home from treatment even when we were leaving very late at night. He didn't even dose off...he was awake the whole trip home every week. Now I don't think there has been a Thursday that we have left treatment that he HASN'T fallen asleep! Today he was alseep before we got out of the parking lot of the hospital and I carried him into the house when we got home and he continued to nap on the couch. I just find that so funny..I don't know what it is. Maybe that he knows he's close to home and he's more relaxed. I don't know.

Scotty starts school on the 24th... I am waiting to receive a call from his new teacher so we can chat before school starts and I can also request an IEP meeting. Every person on Scotty's IEP team will be new this year since he has changed schools and now is in Jr. High. I don't know if this is a good thing or a bad thing but I will find out soon! The wait of meeting his new team is killing me. I hope she calls soon or I will be calling her. :)
As far as any appointments for Scotty.. I think he has another dentist appointment next month then we will be working on scheduling his annual appointments with all his specialists at Stanford for January.

Thank you for continuing to take the time to come check up on Scotty. I know how each of you are very busy with your own lives and your children.
Your guestbook entries mean the world to us and will always hold a special place in our heart.
Many Many Hugs,
Kim & Scotty

Sunday, August 2, 2009 9:44 PM CDT

Hello Friends

We had such a great time at Camp Prime Time! It was so good to see all of our friends. The weather was so beautiful. The only problem we had was with the mosquitos. They were really bad...so bad that we really couldn't be outside after dusk but that was ok we just all went in the lodge and the kids played in the rec room. Scotty did wonderful except the first night when his mosquito bites were itching him. We tried everything to keep those bugs away and then treat the bites but nothing seemed to work but we didn't let those mosquitos ruin our time at camp. This was the first year we got to see the new treehouse! It was so awesome... the kids had a lot of fun playing in it. On Saturday we got to take a boat ride on the lake and Sunday the kids got to horseback ride. We had the same volunteers that we had 2 years ago... they are all so nice and remembered all of us. They say we are their favorite group ;)
On Sunday afternoon when camp ended we drove back to Seattle for a couple of days of sightseeing. We also were able to spend 1.5 days sightseeing there before we headed off to Camp. We walked all over Seattle, spent a lot of time down at Pike's Market because it was within walking distance of our hotel. We rode the double decker bus many times because Scotty enjoyed it so much. We did the tourist trap of the Space Needle and I am glad we did. Tom & I had been up it before but we wanted Scotty to go up too. We let him walk on the observation deck but unfortunately there were bars right in Scotty's line of vision so we went inside and sat at a table that was high so Scotty got a clear view. He seemed to enjoy himself.
Scotty is out of school until Aug. 24th so I am going to have to come up with some day trips to keep him busy. It has been so hot here lately that we have been staying in side but this week is suppose to be a little cooler.

Treatments are going well but we are still having some problems with accessing Scotty's port. The first 2 treatments there was absolutely no problem accessing and since then it's been a minimum of 2 sticks before accessing. This is so hard to watch..now we have so many people holding Scotty while he's accessed that he is getting a little freaked out and harder to hold. Scotty had an appointment with his Audiologist last Friday at Stanford so we stopped by and saw the gang at the unit where he did treatment. I had the nurse who worked with him there the last 2 months feel his port and she said it felt the same and didn't feel it had moved. Later that day Scotty and I drove over to Half Moon Bay and had lunch with Mary and Lisa who also worked as Scotty's nurses and they both felt his port and it felt the same to them. This is obviously good news for me because a sedation for a port repair really isn't something we can do or want to do. We will just need to brainstorm with our new nurses to see how we can resolve this. They actually use Pic nurses so they have being doing this a long time but I know Scotty's got a tricky port.
We had a wonderful lunch with Mary and Lisa.. we sat in the corner of the restaurant surrounded by big windows over looking the beautiful beach and ocean. Scotty sat there for 2.5 hours while we visited and was such a good boy. Lisa and Mary have been such a big part of our lives these last 3 years with Scotty's treatments and I am
so glad that we can continue our friendship.
I posted a whole bunch of new pictures in the slide show of Camp... so many that I will wait a bit before I put some up of our time in Seattle.
Thank you for continuing to check up on Scotty! We know how busy everyone is so we really appreciate you taking the time to visit.
Hugs
Kim

Saturday, August 1, 2009 7:48 PM CDT

Monday, July 13, 2009 5:28 PM CDT

Hi Friends

Sorry for the delayed update. We've had a very busy couple of weeks and we will be leaving this Thursday so I thought I would do a quick update.
Scotty's dentist appointment where he had to get his filling went very well. I think it was me who was traumatized the most. Everyone in the room said Scotty did better than ever. He was mad but did not cry. When we arrived home from the appointment he slept for a couple of hours then he woke up perfectly fine.
Scotty's treatments are still going great! There have been some problems accessing his port these last two treatments but I hope this has been resolved with the new plan of having a second person hold his port in place while the other does the accessing instead of trying to do both.
We will be doing treatment on Wednesday this week because we will be leaving for Seattle on Thursday to attend Camp Prime Time ( www.campprimetime.org) this weekend. We decided to take a couple of extra days to sight see in Seattle. We are really looking forward to this trip and seeing all our MPS friends in the Pacific Northwest.
Other than this things are going well.... I am always amazed at our little Scottyman. Today I needed to run out to Longs Drug Store to pick up a few things and decided I would let Scotty just walk with me instead of putting him in his stroller and he did so well. There were a few times when my hands were full that I was not able to hold his hand and I told him to stay right with mommy and not one time did he leave my side. I know he was wondering where all the videos were but he didn't try to go find them.
Well I hope you all have a great week! I am looking forward to posting pictures from Camp Prime Time next week!
Hugs
Kim

Saturday, July 4, 2009 7:49 PM CDT

Hello Everyone

I hope you all are enjoying your 4th of July!
We just returned home from taking Scotty to see Ice Age 3 at the movies which he thoroughly enjoyed! He sat in his own seat the whole movie like a big boy... he was so good. We had taken his stroller in so he could sit in it right there at the handicapped seating but it was too close so we just parked the stroller and walked him up to a seat that was a little further away from the screen.
Not one time did he want to leave the movie and even laughed appropriately during the movie!
So now we are home and I have a few minutes before dinner and watching fireworks tonight so I thought I'd update Scotty's journal.

Things have been going great. Scotty has been attending summer school and he has about 2 more weeks left. I think summer school is over the day we leave for Camp Prime Time (www.campprimetime.org) which is the middle of July. We are going to fly into Seattle the day before and do a little sight seeing and then drive back to Seattle after camp for a couple more days of sight seeing before flying home... I can't wait to see our other MPS friends that we haven't seen in a couple of years. We are going to have so much fun.

Scotty's treatments that we are now doing locally are still going wonderful. We did his 4th treatment last week. We really miss our nurses at Stanford but I know they are so happy that Scotty is being cared for by such great nurses here at our local hospital. We have the SAME ROOM AND NURSE(Rae)EVERY WEEK! I asked last week what is going to happen when winter arrives and their whole pediatric floor is full and they said it doesn't matter because Scotty's room is reserved every Thursday for him... that was so nice to hear. We have had friends come by every week to visit during treatments because they can! Last week I think we left the hospital at 2:45 and were home by 3:00. We now have our Thursdays and Fridays back. Before we were both too tired to do anything. The last 2 Thursday nights we have even attended Concert in the Park and stayed out to 9:30pm. Besides ..transitioning closer to home has been the greatest gift ever for us. I know lots of the boys are doing home infusions but we are just so happy to be in the same town!

Scotty had his quarterly dentist appointment a couple of weeks ago with his wonderful Dentist Dr. El Farra

He has been watching one tooth the last year and feels it it time that he needs to do a filling before it starts hurting Scotty so that appointment is this Tuesday. I am still a chicken mom when it comes to these dentist appointments and can't be in the room when they do the work.. Tom, my sister Kelly and even our friend Sherri is always there assisting the whole dental team in holding Scotty and this has just been for the cleanings (and xrays last visit). I don't see myself going in this week but Tom knows when to tell the Dr. that Scotty needs a break and the Dr. is happy to stop just wish us luck for Tuesday!
Scotty's physical therapy appointments have been going great now that we are back on a weekly schedule. He has been working on going up and down stairs and he is doing so great!

Well I had better get back to either making dinner or ordering dinner so we can finish up and go watch fireworks.

Thank you all so much for continuing to check up on our Scottyman!

Love,
Kim and

Thursday, June 18, 2009 8:55 PM CDT

Hello Everyone

Well today was Scotty's 2nd treatment locally and like the first everything went perfect. I don't ever see this being anything but perfect unless there is an issue with Scotty. I am not going to say the "R" word for fear of jinxing myself. I have to tell you it is so nice to get home so early and Scotty not feeling so stiff from the long day. Today he spent hours outside after we got home helping daddy get us ready for a weekend trip.

Scotty was a little tired when we arrived because he had a Scotty party this morning at 3:00am. I thought I heard some movement in his bedroom this morning so when I went to check on him he was laying upside down on top of his covers wide awake and after getting him a drink and laying down with him for a bit I think he stayed awake probably till 4:30 am. Me and my possee (the dog and cat who go every where I go) decided to leave him awake in his bed about 4 but I heard him laughing a little longer then quiet. I decided to fore go my 5:00 am wake up call for my morning walk because of Scotty's party. I finally fell back to sleep around 4:45 only to be awaken by the dog scratching at the bathroom door which I must of shut her in. I didn't have nice words for Coco then but she's back on my happy list now.

We had a great weekend last weekend when we went to Scotty's cousin's graduation/birthday party and the next day met up with Elijah and his family who were here on vacation from Idaho. Elijah is so cute I just wanted to steal him and his little brother Noah! Brooke, Issac and Brooke's parents are wonderful people and I just can't wait to see them all again at Camp Prime Time next month. Elijah looks so much like Scotty when he was that age. Elijah is doing so well and I am so happy that he was able to start treatments at such a young age. He was one busy boy... just walking everywhere and not stopping. He has no problems at all getting around which is so awesome. I will post some pictures of our visit with them. We had to drive through Napa (darn) to get to the resort where Elijah and family were staying so we stopped in Yountville early Sunday morning and had breakfast at this wonderful place then made a quick stop at my favorite winery to stock up on some wine that is only available there at the winery. We arrived home about 8:00 pm Sunday night which gave Scotty a little down time before starting summer school the next day. Summer school is going well and actually this is the first year since Scotty's been attending summer school that he is actually riding the bus to and from school. In the past years they have always wanted to pick up Scotty way too early in the morning and the ride home was too long but this year he is on the bus just a little more than 30 minutes both ways which is just right for him. Well just right would be 15 minutes but the school is across town.

Tom is working 12 hour shifts this weekend on Saturday and Sunday so Scotty and I are taking off tomorrow to go camping with some friends. They have a trailer and enough room for Scotty & I so off we go. I'm looking forward to a little get away even though we've been gone the last 3 weekends. We'll miss Tom but we will be home Sunday before he gets off work to celebrate Father's Day with him. We can't miss celebrating Father's Day with the greatest daddy ever!

I hope you all enjoy your weekend and celebrating all the special daddy's in your lives.
Hugs,
Kim & Scottyman

Friday, June 12, 2009 6:28 PM CDT

Hi Everyone

Well we have had a very exciting week...After close to 3 years Scotty received his first treatment locally yesterday! I know I have talked about this forever and finally with the help of many many people this became reality. Scotty's last treatment at LPCH/Stanford was very emotional and so sweet....the nurses brought in a wonderful gift basket for Scotty of his favorite things and boy do they know him well! A big box of Apple Jacks because he ate them there every week while being accessed, microwave popcorn, homemade chocolate chip cookies and a duplicate of a favorite toy that he had lost one trip to treatment. I can't even believe they remembered what this toy was but they did. He also received a Build a Bear and they gave me this wonderful basket from Bath and Body! It was hard to leave them and say goodbye to everyone else who stopped by. They all know when we have to be back for any appointment there we will surely stop in and visit them.
Scotty's 1st treatment at Memorial went perfect. From the time we arrived they were very prepared for Scotty. When they did say that they were not going to call pharmacy until Scotty's port was accessed I said oh no not you too! She reassured me that Pharmacy had already called that morning to see if they should mix Scotty's Elaprase but were told to hold off and once Scotty was accessed they would call them back and within 15 minutes of being accessed his drug was up in the room!!!!! One of the many benefits of a smaller hospital. I think we started treatment at 9:00am and were finished by 2:45. My sister Kelly was with us all day and daddy was so excited that he came over and visited us at lunch. There are a few little glitches we have to work through...it looks like every week I have to go to admitting which is no problem at a small hospital and every Wednesday we have to visit his Pediatrician Dr. Bolton so she can do a History and Physical prior to his admission. Unfortunately she is at a different location than the hospital but still this all beats the commute. Everyone worked so hard to make this happen especially Dr. Bolton (in the home picture with Scotty above)and Cynthia from her office. In fact I think I owe Cynthia a trip to Paris for pulling this off! Scotty had a wonderful nurse name Rae who I have been told will work with him every Thursday and I am so happy because she is awesome... they all are awesome there. Scotty had so many people stopping by to see him yesterday and welcoming him... AND ALL THE HUGS! Rumella who is a Critical Nurse Educator spent most of the day in the room with us yesterday just making sure everything went well.. we absolutely love her and had so much fun talking with her...she worked very hard also getting Scotty there. Scotty was a little quiet and I don't think it was because of his new surroundings as he adjust pretty well, I think maybe he was having some gas pains. Rumella walked into the room just as Scotty was beginning a little cry she thought she scared him but I knew it was something else. He just had a few tears and just remained quiet after that but it was his Aunt Kelly who I had to worry about because it is very rare that she has seen Scotty have any tears and I am not kidding you she had to put her head between her legs as she was beginning to feel faint watching him cry :(

Yesterday when we arrived home it felt like a school day because this is the time Scotty would normally get home. I know in the future I will feel the full benefits of not commuting but last night I was still a little tired out and I think it was just the stress and anticipation of this all finally happening.

Our trip to San Diego last week was great. Our MPS Society Board Meeting was very productive which is always a good thing and it was so good to all the other Board Members. Scotty and Tom hung out with my brother and family while I was in the meetings and then they joined us Saturday night for our dinner. We checked out around noon on Sunday and headed over to my brother's house and visited with them until we left on Monday. I just can't believe how big my nieces are getting. One is a year younger and the other is a year older than Scotty. They both still love him very much and take good care of him when he is around.
I just wished we still lived closer to each other :( BUT at least they are still in the same state in a beautiful city that is great to visit!

Tomorrow we are suppose to be heading over to Napa for a graduation/birthday party at Tom's 2nd cousin. We saw them about 3 weeks ago after we attend Kassi's walk/run. Scotty's Aunt and cousin were soooooooo excited to see Scotty and they love him so much. We spent the whole afternight and night with them visiting. Tom's cousin Brenda has some great kids and I just like to be there to help them celebrate her graduation and birthday. We will stay the night in the area because the following day we are meeting up with another MPS II from Idaho who are here on vacation. Brooke and I have been chatting via email and/or IM for about a year and I am so excited to finally meet them. Their son Elijah has hunters also and he is just as cute as a bug! He has a baby brother Noah who is also adorable so I am really looking forward to Sunday and meeting them.

Scotty starts summer school on Monday for 6 weeks. His graduation/promotion last week was very cute. They did a great job with the celebration and I just wanted to say Thank You so much to Sherri who also attended with us.
Scotty will have a totally new IEP team next year because he is now attending Jr. High. I have mixed emotions about this but will give it a try. I know he will be happy with all his friends who will also be attending the same class.
Change is good right!

I hope you all have a wonderful weekend. And truly from the bottom of my heart thank you for continuing to check in on Scotty.
Hugs
Kim

Friday, June 12, 2009 1:43 AM CDT

I was working on Scotty's website tonight and ran into some problems and now it's late and I can no longer see straight... if you're here and see this message please check back later on Friday and I will have lots of new photos and updates to share with you!

Tuesday, May 19, 2009 7:49 PM CDT

Hi Friends...

I am sorry these updates are getting few and far between....I just don't know where the time goes anymore!

Most importantly our little Scottyman is doing great as ever. His treatments have been going well and believe it or not it looks like he could be receiving his treatments locally starting June 11th!!!!

Our Pharmaceutical Co. is doing their In-Service (training)on June 3rd with the local hospital so starting the next should be the plan. I don't remember if I had told you before that Scotty's local pediatrician, myself and Scotty actually had a meeting about 3 weeks ago at the local hospital with the upper Admin.. there was 5 of them. It all went well and they are very excited about Scotty coming and seemed to be very prepared. They had asked if we could attend the in service also so the nurses could meet Scotty but the date they choose is the same day we are leaving to drive to San Diego for my Board Meeting...it's about a 6-7 drive but I think we can stop by hospital first at 9:00am for a quick visit when their training starts. I would really like to meet the nurses before our first infusion. It is going to be very sad to leave Stanford but come on he has 7 specialist there so it's not like we won't be back! it just won't be weekly which is going to be so much better for Scotty (ok and me).

The day we leave for San Diego is Scotty's last day of school and I feel a little bad about him missing that but we all know not much gets done on that day. Since he is moving on to Jr. high he will also participate in a "graduation" on Tuesday night. Teacher just told me about today so I don't have much information on it yet but it should be cute. Scotty will be off for a couple of weeks then will attend summer school for about 6 weeks.I am praying that they hook him up with his 1:1 that he currently has otherwise I just may be rethinking this summer school issue. I can't imagine him spending the morning with someone who knows absolutely nothing about him and his condition. I have talked with the summer school principal a couple of times already so just praying that I am a squeaky wheel!

Scotty had been receiving Physical Therapy through our private ins for a little over a year then they did a reevaluation last February and denied him for further p/t!!! Of course it's just another battle in the life of MPS and know me I took the battle on and just received notification yesterday that my appeal had been won! So we should be starting P/T again this week which I am very excited about.
As far as any other Doctors appointments....Scotty is
appointment free until a follow up with his Audiologist in July which is great because it's going to be a very busy summer and stay busy through the end of the year. We have San Diego in June... Camp Prime Time in Yakima,WA in July, hopefully we are going to attend a fundraiser in
Sept in NC for our little friend Nathan and then our conference in Orlando in December! I will also be back in Fl in Feb for another conference so as you see it will be busy but we are looking forward to every trip so much! Thank Goodness our little Scottyman is such a good traveler.

Talking about trips... my trip to DC was one of the greatest experiences of my life. It was such an empowering feeling to advocate for all our MPS children. We had several meetings with different Senators Aides and they went very well. It was a very quick trip but well worth every minute. I am so fortunate to have Tom who is the greatest daddy in the world. He always takes such great care of Scotty when I am gone. His work is always so accommodating when Tom needs to be home with Scotty when I am gone. Tom worked while I was gone he just went into work a little late after scotty was on the bus. We are very fortunate that Scotty's 1:1 at school is now our respite provider so she would meet him at home after school and stay with him for about an hour until Tom arrived. It all worked out perfect. I wanted to spend more time in DC to do some sightseeing but just had this feeling that I wanted to get home asap because I was missing Scotty so much. Maybe next trip to DC I will be able to sightsee. I do have great pictures and will post those one day soon!
The following week I went with our local school district (Spec. Ed.)Admin to our State capitol to advocate for special education which was very exciting also.

Well dinner is ready so I will stop here. I hope you all are doing well. Please know that I think of each and every one of you.
Hugs and Much Love,
Kim

1996-2009
WE LOVE YOU NATHAN

Friday, May, 15, 2009 6:15 AM CDT

TODAY(MAY 15TH) IS INTERNATIONAL MPS AWARENESS DAY!

A resolution proclaiming May 15, 2009 as National MPS Awareness Day was once again unanimously passed by the United State Senate on May 12, 2009.

Today we:
Remember all the children and adults who suffer from MPS and related diseases.
Think about the children we have lost.
Think about the doctors and scientists who are dedicated to finding a cure for MPS and related diseases.
Remember each other and be thankful for the strength and support we both give and receive.

Thank you all for your love and support.

Many Hugs,
Kim, Tom & Scotty

1996-2009
WE LOVE YOU NATHAN

Sunday, April 5, 2009 9:30 PM CDT

Dear Friends

Unfortunately I have to start this journal entry off on a very sad note and asking you all for prayers for our very good friends Melissa, James and their family. On Saturday night their son Nathan also affected with Hunter Syndrome passed away. Nathan had been pretty sick these last 2 months. This just breaks my heart as we loved Nathan so much. Please keep them all in your thoughts and prayers.
Thank You

1996-2009
WE LOVE YOU NATHAN

I would like to update you on a view things happening here that I had mentioned in my last couple of journal entries.
It looks like everything is coming together for Scotty getting his treatments locally!

The local hospital has been given a couple of dates to receive training from Shire Pharmaceutical on Scotty's treatment. These are at the end of the month because there are scheduling issues with Easter break and nurses on vacation but looks like every one that needs to be trained are all back by the end of the month so hopefully we can get this training in and start treatment in beginning to middle of May! I am so ready to do treatment here! I know this will be so much easier on Scotty and help improve his quality of life.

Another update is that they are bringing Child Life and Pet Therapy back to the Short Stay Unit where Scotty is getting his treatment. I was informed they will be launching a 4 month pilot program in that unit. It won't start until May and we will probably be gone a short time after but at least they have stepped up to the plate with the pilot program. I just hope they continue it after the 4 months but I don't want to worry about that now.

We have been pretty busy with Scotty...he's had a dentist appointment, a neurosurgery appointment, his IEP and now I am appealing our Private Insurance's decision to discontinue his P/T. I feel confident that I will get his therapy back once I submit my appeal but you know it's just another battle to be fought! These battles could really suck the life out of you if you let them. And there have been times that I just want to say I give up until I see Scotty's face and remember why I fight as hard as I do.

Scotty's last day of school before spring break is Wednesday. He will have treatment Thursday and Friday break starts. We will be heading off to the coast for 1 week. This is where I will rejuvenate myself.

At the end of the month I am heading to Wash,DC with some other MPS Society board members on the Legislative Committee to meet with our Legislators. I am so excited about this and yet a little intimidated. I have advocated very hard for many services but always on a local level so to learn how we do this on a National level is going to be a little different I am sure but I look forward to learning all about it and advocating for all our MPS families.

I wanted to say "THANK YOU" to some very special people in our lives. My twin sister Kelly, Sherri and Sharon who have taken time out of their busy schedules to spend their entire day with us at treatment. Our treatment days are very long and even mentally exhausting so to have such wonderful family/friends offer to go with us and keep us company is the greatest! Thank you guys! We love you very very much.

Well I know this is long and I had better cut it off here.
I hope you all have a wonderful week.
Thank you for your continued love and support.

Many Hugs and Much Love,
Kim

Friday, March 20, 2009 5:13 PM CDT

Hello Everyone

Sorry for such the long delay in updating... as always no news is good news right! Things are going great with Scotty. His infusions have been going well and Scotty is getting use to his new nurses. We have had Cheryl the last 3 infusions and she is just so great with Scotty and really cares about him already. There have been some other changes with the Day Hospital (what is now called the Short Stay Unit)that I am not real happy with and that is that we no longer receive Child Life Services ... which included the Pet therapy! We became very close with the pets and especially their handlers...it is so sad that this service has been ripped out from under us. It's bad enough that we lost the nurses we worked with for so long but to take child life and pet therapy is heartbreaking. I think they even took all the toys from the Day Hospital as the new SSU was offering Scotty a toy from a box that had been donated. How sad is this that the Children's Hospital at Stanford can't afford to keep Child Life in this unit.... as you have probably guessed they are still receiving Child Life Services in the new Onc unit that all of our nurses had to move to. I am very happy for those children that they continue to get the services as all these sick kids deserve it so much.
For those of you who know me ... know that I won't let this go without putting my two cents worth in.. I guess this is another email or call to Patient Relations.

On another note we have been so fortunate to have such a wonderful support staff here locally with Scotty's Pediatrician (Dr. Bolton), her referrals specialist (Cynthia) and Scotty's Private Ins. case mg (Barbara) along with all of our support at Shire Pharmaceutical. They have all been putting alot of time in helping us with many issues... the most important being getting Scotty's treatment closer to home. After many phone calls the upper mgmt nurses at Memorial Hosp have made the decision once again that they do not have the "staffing" for Scotty's treatment! WTH! I can not believe that they can make such a decision without further consult. VERY FORTUNATE for us ...Scotty's pediatrician has decided as I did a long time ago that NO to his treatment locally is not an option this time. You gotta love her! She said that she will just start admitting him weekly for his treatment.. they can't refuse BUT we have to get the staff (or lack of according to them) trained with the Elaprase and she said she wanted it done within the next 3 weeks. So this will be interesting to see how this all plays out. Shire is sitting and waiting to find out what day works for them so they can schedule the training...hopefully it will be soon. I will keep you posted.

Today was a great day! Scotty's teacher informed us yesterday that there was going to be a school assembly today and that Scotty was going to receive an award! Of course we just had to be there. Scotty received his award for "COURAGE" which is really great because this is the name of the quarter MPS Booklet mailed to society members. I could tell he was a little stressed out when we arrived because all the kids were around and excited as they were entering the cafeteria where the assembly is held... lots of people and loud noises but we were so proud of Scotty! I did take pictures and even a video and hopefully will get it all uploaded tonight when we return home from dinner out.
I know I have mentioned before how wonderful Scotty's 1:1 school Aid is with him with that being said we now have her available as Scotty's respite provider at home. We get 16 hours a month that goes unused because I don't have a respite provider and we just lose those hours. I am excited that she will be helping us at home and in the mean time gets to make extra money! She is so great with Scotty.

It has been beautiful weather here lately (low 80s) and we are gearing up for spring break in a couple of weeks. We have decided to head over to our favorite RV park next to the ocean and chill out for the week.

Thank you so much for stopping by and checking up on Scotty. We appreciate and love each and everyone of you.
I hope you all have a wonderful weekend.
Many Hugs,
Kim

p.s. I hope you enjoy Scotty's new background page here... I have to tell you that monkeys just crack him up! He loves the monkeys in Tarzan and Jungle Book so I thought this is perfect for my little Scottyman

Friday, February 13, 2009 11:12 AM CST

Hello Everyone

I hope you all are doing well. I am so sorry for the delay in updating Scotty's journal. February was a very busy month but things seem to be getting back to their normal routine.

My trips to NC and San Diego were both great. The Board meeting and the Conference were both awesome. Thank you so much to our Regional Center who allows me to attend the Conferences!
Scotty did a little PR work for MPS behind the MPS Society display table. The best part was he made new friends with MaryEllen who is on the MPS Board.

After the conference was over Friday afternoon I headed over to my brother's house (my brother picked Tom and Scotty up earlier from the hotel) and we visited with them until Sunday. We had such a great visit! Scotty had so much fun visiting with his cousins. We got to go to Sarah's basketball game on Saturday morning and watch them win! Scotty loved watching the game in the gym. His cousins of course took such great care of Scotty while he was there. His younger cousin was a little concerned when she first saw him that he wasn't as big as she thought he should be. (aren't they cute!) He got many back rubs and neck scratchings from all of them. Of course he always gave his special Scotty arm and leg rubs. I will be putting some new photos of them all on his slide show.. hopefully when you read this they are there ...if not check back soon!
We had great dinners on Fri & Saturday (my brother is an awesome cook)and
Saturday night we watched two great movies. Sunday we loaded up and headed home about noon. It's always so sad to leave our visits there..it just kills me because I know how much Scotty loves his cousins and misses them when he is home.
I think we got home about 6 that night. Scotty did so well on the ride there and home. He has always been a great car rider (except those few years he would get car sick).
Getting home from a trip and unpacking is always a lot of fun...NOT! that of course took a couple of days. I then had Scotty's IEP meeting on that Wed. So you can see that was another busy week.
Scotty has been doing great. Treatment has been going well. We now have had 2 weeks with a brand new staff of nurses. Gosh I miss our other nurses so much. Some have popped in quickly on their 30 minute lunches to say hello. The new nurses are trying hard and they are doing good except the last two weeks it has taken them 2 sticks to access Scotty's port
:( I pray next week goes better! Of course Scotty is so forgiving he never holds a grudge against his stickers.

Scotty has been doing great with his
hearing aids. I won't lie and say that they haven't made their way to his mouth because they have but we are quick to get them out! This seems to happen when he has some done time. He has done this at school also which concerns me because he has a 1:1 but they tell me also that he is so quick when he does it. It doesn't happen that often but still like to stop it from happening at all.

Other than that everything is going well. Tom and I got away last Saturday for the day and headed off to San Francisco and saw the play Wicked. I had seen it a few years ago on Broadway but Tom hadn't seen it and this play was just as awesome as the first one I saw. We had a great time having time for lunch before the play and a glass of wine after. Thanks so much to our wonderful friend/neighbor Rita who took care of our little Scottyman. She has known him since he was born and cared for him many times. He loves her so much. They had a great day at home watching movies together.

I hope you all enjoy your weekend!

Thank you so much for continuing to check in on Scotty. We appreciate your love and support so much!

Monday, January 19, 2009 10:40 PM CST

Hello Everyone

Thought I would do a quick update while I had a few minutes. Not a whole bunch happening here this weekend as it seems our little Scottyman is trying to catch a cold.
He wakes up very congested in the morning and with a runny nose. Luckily the runny nose is still clear and not green which would lead me to believe that he is still free of an infection but just to be safe we will see his pediatrician tomorrow morning. I just don't want to wait to long and have this move into his chest. Scotty has never (knock on wood)had pneumonia and we would like to keep it that way. Hopefully we can get whatever is going on cleared up by Thursday so he won't have to miss his ERT.

We are still waiting on his hearing aids... I just found out last week despite several emails for updates that the paperwork that was submitted for his Hearing Aids to be approved for purchase was never received so we are back to square one waiting unless tomorrow I can get a hold of someone to light a fire under them! I was suppose to be going to a meeting at Scotty's school tomorrow morning for special needs parents (so we can meet and talk with other parents) but that doesn't look like it will be happening and either does the observation I am suppose to be doing Wednesday morning in Scotty's class. I wasn't able to observe last week because I didn't feel well. One of these days I'll get there to observe!
One thing that we did get accomplished last week was Scotty getting casted for his new AFOs. Hopefully we'll have the new ones in 2-3 weeks.

Scotty's treatments have been going well. We are seeing new faces as the changing of nurses is getting closer!
A couple of weeks ago when we had to stay over night near the hospital we had planned to meet up for dinner with one of the nurses Lisa by the time we touched base that day it was close to 5pm and I still hadn't gone and found a hotel to stay in although I had a good idea which one so it wouldn't be a problem... then Lisa said I don't know why I didn't think of this but why don't you guys just stay with me! After thinking about it for a moment I said sure that Scotty and I would love to stay and visit with her. What was great is she lives literally right down the street from where we camp in Half Moon Bay! So seeing the ocean in the morning before heading off to the hospital was so nice.
We had a great night visiting, eatting pizza and watching a movie with Scotty... oh and there were those margaritas! yummy

Thank you so much for continuing to check in on Scotty. We appreciate your love and support so much!

THANK YOU SO MUCH VANESSA FOR THE BEAUTIFUL GIFT!

Thursday, December 18, 2008 6:12 AM CST

Hello Everyone

Sorry for the long delay in updating Scotty's journal. I guess the holidays are just keeping us all busy. Scotty's treatments have been going great. Last Thursday after his treatment we stayed the night near the hospital as Scotty had to be back there at 6:30am the next morning for his MRI and ABR. They originally had hoped that they could do this under general anesthesia but once they got Scotty out his airway just was too unstable so they had to intubate him. They started with the MRI about 8am and Scotty was not back in the recovery room until 1:30. He has such a hard time with coming out of a sedation.. we were in that recovery room until 7pm that night. At one point they decided they wanted to admit him for observation overnight but it was about then that Scotty started eating some dinner and just did a complete turn around so we stayed for a while longer then headed home. He seemed a little tired over the weekend so we just stayed home and let him rest. The ABR did show that he has moderate to severe hearing loss which I always knew but needed the ABR to confirm and to also proceed further with him getting some hearing aids. We will go back over to Audiology today after treatment and discuss the ABR in more detail and to also look at the different Hearing Aids that are now available.
Well I must get going but I will update again after the appt with the Audiologist.. wish us luck
Hugs
Kim

Wednesday, November 26, 2008 11:12 AM CST

Hello Everyone

Sorry for the long delay with updating. Days just seem to fly by anymore.
For the most part everything has been going well. Scotty's treatments have been going great no problems there at all. In fact I was going to talk with his genetics nurse and/or doctor about increasing his rate. We have been at the same rate for over a year now and I was thinking since we are no closer to moving to a local hospital then we should try the rate increase while we are still at Stanford.... then I got some very disturbing news last week during Scotty's treatment that has changed my thought process. The plan has always been to get the cancer children into their own infusion center inside their Oncology ward well that new construction is nearly finished and what I was told last week by Scotty's nursing staff was that they (every staff member in the Day Hospital) were offered jobs only at the new oncology center.. if they didn't take the offer they'd have no job so of course they all sadly took the offer..... What does that mean for our Day Hospital????????????? Completely new staffing! All new nurses! I was shocked why weren't these nurses offered the option of staying there? This Day Hospital has to stay open as 40f patients there are not oncology. No one seems to have an answer... On my way home that night I called Scotty's Genectics nurse to ask her if she knew anything about this? She said no they haven't been told anything. Obviously this is a big concern for them as they have many patients receiving some type of infusion and 3 that are receiving Scotty's drug. She is researching this for me and hopefully will have an answer by next week. If this in fact is what to happen then I will need their help in finding a local hospital for Scotty to receive treatments. If we are going to have to start at square 1 with new nurses it mine as well be close to home. Although our local hospital said no to Scotty's treatment this last summer we never did put any pressure on them but now we will and this will have to be done in a very short time. There have been times before where I felt that Stanford (actually Lucille Packards Children Hospital LPCH at Standford) was not looking out for the best interest of the children receiving treatments there and this is definitely one of them. As always I will voice my concerns with Patient Relations as I have done a few times before. I will keep you posted :)

On a happier note we at the Coast at our favorite RV park for the whole week. Our friends will be arriving today and staying through Saturday so we are going to have a great Thanksgiving together. Scotty had treatment yesterday so we will just relax the rest of the week and enjoy our time here.
I hope you all have a wonderful Thanksgiving. I know we have so many things to be thankful for and on the top of my list is all of you who have been the greatest friends ever.

Happy Thanksgiving
Many Hugs and lots of Love
Kim & Scotty

Friday, October 31, 2008 11:07 PM CDT

Hello Everyone

I'm sorry that it has taken me two weeks to update! Life was crazy for a couple of weeks there with our trip to LA for the Walk/Run and then the following week me traveling to Raleigh, NC. The Walk/Run was awesome! We had such a great time visiting with everyone. Tami does such a great job every year putting on this fundraiser/Family Meeting! After the Family meeting is over Tami has us all over to her house for a barbecue!
THANK YOU TAMI, YOU'RE THE BOMB!
The picture on top of the page is Scotty with all of Team Shire. Shire is the pharmaceutical co. that makes Scotty's drug. It is such a great picture of all of them. I think all but one of them flew here from Boston to attend the fundraiser. They are great and truly care about our children. Scotty was such a good boy as always. We left home on Friday and returned early Sunday evening. Our friends followed us home and stayed the night so it was great to visit with them the extra night.

On Thursday morning my flight for Raleigh, NC was at 6:30.. so I had to leave the house at 4:15 am to get to the airport on time. A little tiring but the flight went well and I arrived in NC on time. I was recently elected to the National MPS Society Board and was attending a short orientation meeting and also to sit in on their last Board Meeting of the year. Wow what an experience! I am so looking forward to working with such wonderful people for a great cause. We had meetings Friday afternoon until late Friday night and all day Saturday and ended with a wonderful dinner Saturday night. It was so great to visit with all the other board members who are MPS parents also. I think I knew everyone except one of the other newly elected. My flight home on Sunday wasn't until 2:40pm so I was able to get together with a couple of my friends for breakfast along with a few other Board Members whose flight was later like mine. We had a great time and even got in a little shopping then my friend Trish dropped me off at the airport. I hated to leave but I was looking forward to getting home and seeing my boys. Scotty did great with daddy. Tom ended up having to work O.T. all day on Saturday so his sister Nancy stayed with Scotty for the first time ever and they did great. Nancy was so excited to finally spend some time with Scotty and to help us out. They just moved here from San Diego this summer and are always offering to watch him. THANK YOU AUNT NANCY!
This last week was just a catch up week... I finally got back on CA time and then it was treatment day. Scotty has done great with his treatments. We've done treatments on Wednesdays these last two weeks and was back to our Thursday this week so we missed our regular nurses but Wednesday nurses love Scotty just as much which is so sweet. It was great to see our nurses on Thursday!

I really wasn't expecting to take Scotty trick or treating tonight 1. because it was suppose to rain and 2. because I couldn't find him any costume that didn't require a mask which he wouldn't wear. Luckily I got some good ideas off a tv show on Thursday and had a back up plan in case we went out... well we did and Scotty was as cute as ever! HE WAS A LAUNDRY BASKET! It worked great with his wheelchair. We only went to about 10 houses on our block but enough for me to get some great pictures. I will hopefully put them on his slide show when I get done here...if you don't see them check back soon... it's getting late and I'm getting tired :)
I hope you all had a great Halloween and will enjoy the rest of your weekend.
Thank you so much for checking up on Scotty.. you all are such great friends.
Many Many Hugs,
Kim

Wednesday, October 15, 2008 9:46 PM CDT

Hello Everyone

I hope everyone is doing well and enjoying Fall! I thought it had finally arrived in CA when I sent Scotty to school in long pants one day but that was just a teaser now we are back up to 85 degree weather and shorts.
Scotty has been doing great .... he has finally got over his cough. I think he's been back to school for a week and a half and during that time I made sure he didn't get too tired out which seems to bring on his cough. They have been transporting him around in a wheel chair because their walks to the cafeteria are a little long and I felt it was best while he was recuperating. His teacher said yesterday that he felt that Scotty was back to 100o we can do away with the wheelchair now. Other than this things all about the same. We did get to take a great ride over to the wine country in our mustang convertible one beautiful day. It was a perfect day for Tom, Scotty & I. We had to stock up on some of our favorite wine that is only available at the winery there in Napa so we just went there and then hit a great restaurant for lunch and had a great ride back home.
Scotty's treatments are going good.. we had one today rather than tomorrow because we are driving down to LA on Friday morning for the walk/run. I just didn't want him car and bedbound on Thursday and Friday so we switched days. I can't wait to meet up with all our mps friends.. we are going to have so much fun. The following week we are also doing Scotty's treatments on Wed because I will be heading out to Raleigh, NC on Thursday thru Sunday. Scotty will be staying home with his daddy... which I know they will do great.
Thank you to all my wonderful friends and family who made donations in Scotty's name for the walk/run... every little bit helps to help find cures/treatments for all our MPS babies. If you haven't donated yet and would like to that is no problem..just go to link above and you can do it online. You can donate even after walk/run is over.
THANK YOU THANK YOU THANK YOU THANK YOU!

Hugs and Much Love
Kim, Tom and Scotty

Friday, September 26, 2008 5:53 AM CDT

Hello Everyone

Well I wish I was able to tell you that Scotty had a great big birthday party but I can't :( When I did the last update Scotty had just woken up with a cough unfortunately that cold/cough has lasted a week! So Monday night which was his birthday we didn't want to have all my family over with him being sick so my twin sister Kelly and her husband Bill came over and we kept it pretty low key. We had dinner then some cake and ice cream. Scotty had a great time. Even sick Scotty is happy!

By the time treatment day came around Scotty no longer had a runny nose but the cough still lingered so I took my chances and my sister and I took him to treatment. They listened to his lungs and said they sounded clear so he did get his treatment. Everything went great and we were home by 6:30 that night. Wohooo Thank you Aunt Kelly for going with us again!
Because of the lingering cough I still kept him home on Friday. We've been giving him breathing treatments so hopefully he'll get over this cough soon.
Last Saturday we had the MPS Family Meeting in the Bay Area and because Scotty was sick we knew he couldn't attend so Tom stayed home with him while I went to the meeting. It was a great meeting and I loved seeing all our MPS friends. I was able to visit with my friends Trish and Kassi who I wasn't expecting to see there so that was a great surprise! Kassi is so beautiful and funny... I had such a great time sitting next to her at lunch.

Other than this things have been pretty quiet(besides Scotty's cough) around here.
Thank You all so much for Scotty's Birthday wishes!
Have a great weekend.
Hugs,
Kim

Monday, September 8, 2008 7:36 PM CDT

Hello Everyone

Looks like I forgot to update after Scotty's treatment last week..woopsie sorry
Everything went great, Scotty had no problems. It was a long day because of another accident on the way there which put us at another 3 hour commute and then when we arrived the Day Hospital it was a little backed up so it took over 2 hours for Scotty to START his treatment. They haven't been ordering the drug from Pharmacy until Scotty's port is accessed because they said the drug is too expensive and don't want it wasted if there is a problem. Well we've never had a problem with accessing his port and it's our insurance who pays for the drug so I really don't feel that should be their concern. About 2 weeks ago I did ask if they would do away with Scotty's 30 minute observation (after treatment finished)and they agreed :) so that was great news!

Other than that not much is happening, Scotty seems to be enjoying school. Tomorrow is his school's back to school night and we will be attending that.

Thank you so much for checking up on our little man.

Many Hugs
Kim

Saturday, August 30, 2008 8:12 AM CDT

Hello Everyone

Well I can not believe that summer is over! I think this summer was the first summer that Scotty has spent very little time outside (when we were home) because of 1. all the fires and 2. the heat. I don't even want to know how many times my little Scottyman tried to open all the sliders to get to the back patio to his little bench :( I just couldn't let him go out into the bad air... on the hot days he did go outside and hang out with daddy later on in the evenings so he enjoyed that but I know he missed sitting in the sun. I see no change in the near future of our hot weather...it was 105 yesterday. Today we are heading out with our trailer for the holiday weekend to our friends house in Paradise which is in the foothills and hopefully a little cooler.

Scotty started school on Monday and seems to be enjoying himself. He has a new aid this year who seems to have more patience and compassion than his 1:1 aid that he had for about 1.5 years who was really too young. I don't think her future was in special ed and you can always tell that right away. Of course there are always some issues at the beginning of the year but I thought I would be nice and let everyone get settle before I start bringing them up which I will do on Tuesday.

Thursday's treatment went well...it was the commute there that was terrible. A truck caught on fire and completely burned and also started a grass fire so it took us 3 hours to get to treatment. grrrrrrrrrrrr So it was a long day with us getting home at around 8:00 p.m. Scotty slept quite a bit that morning and I'm sure it's because he is tired from starting school. On Friday morning I just couldn't wake him up to catch the bus to school so I let him sleep until he woke up and that was around 10:00 a.m. then I took him to school.
Scotty's local Pediatrician called me on Wednesday to let me know that our local hospital has decided they do not want to do the ERT at their hospital until Scotty has been reaction free for 1 year! WELL GOOD LUCK ON THAT ONE! I was telling his Genetics nurse that maybe everyone should look at the big picture here that he has had 1 reaction in a year instead of the "reaction" being 8 weeks ago. I think that is only fair. We have a second hospital here in town but it does not accept our Private Ins. but I think we may be able to get our Ins. to pay out of Network coverage. This is what they do for his Physical Therapy. We are all still working on it...Scotty's Case Mgr. has assured me she will do her best to get Scotty treatment locally and she is amazing and I know she will.
Tami, one of Scotty's nurses came into his room on Thursday was this awesome little toy for Scotty. She had found it at a local Toy specialty shop and she said when she saw it she immediately thought of Scotty. It has many bright colors like his fish and kind of makes the same clicking noise. It's a series of colorful blocks that are held together by a strong elastic string so he can do many things and shapes with these blocks. He hasn't put it down much since she has given it to him.

Well I have to start loading up the trailer so thank you all so much for checking in on Scotty and we hope that you all have a safe and wonderful Labor Day weekend.

Hugs and Much Love,
Kim

Sunday, August 24, 2008 4:40 PM CDT

Hello wonderful friends

Sorry for the late update...our little Scottyman is doing great. Treatments have been going well. Still working on moving to our local hospital. Scotty's local pediatrician is working with our hospital about the ERT. So far the hospital has denied doing ERT at Day Surgery so now Scotty's Doctor is talking with the head of Pediatrics about "In patient" treatment. She has prepared me that they will most likely deny it also then I will have to go in as a parent advocate...hmmmm sounds familiar... always fighting for our childrens services/treatments. But I will do it and I will win :)

Our trip to the coast was wonderful and very relaxing. I think we all caught up on some much needed rest. It was so much cooler over there than at home where it was about 105! It was very hard to leave...and actually I thought about staying another week with Scotty while Tom came back to work but decided that we needed to get Scotty home and work on getting him on a schedule before school starts tomorrow. I don't know if we have succeeded but we will find out tomorrow when he starts. I'm going to miss him very very much since he has been with me all summer.

On Friday Scotty & I had lunch with a very special friend. Barbara is Scotty's Case Manager with our private health Ins. She is great and has helped me so much with Scotty's referrals, making sure that Scotty has all the durable medical equipment he needs and even getting him approved for P/T when I had mentioned what a hard time I was having getting it through school or CCS.
We have always communicated via email so it was so nice to meet her for the first time.
THANK YOU BARBARA!

I think that is about it for right now.... Thank you all so much for continuing to check up on Scotty and your concern for Tom. We appreciate it so much!

Many Hugs,
Kim

Thursday, August 7, 2008 9:28 PM CDT

Hi Everyone

First of all I wanted to give you another update on Tom... he is doing great. He went to see his local Doctor on Monday and they ran a couple more tests that Stanford hadn't and everything came back fine.

The diagnosis seems to be tiredness with a little anxiety added to the mix. It's been a very busy and very emotional couple of months for all of us so I am sure this was a contributing factor. Tom is working now and will be off next Tuesday so we are planning on taking our trailer to the coast and vegging out. We are also hoping that last week was Tom's last night shift! Instead of working one week on and one week off (7 12 hour shifts of day and night) he will be working straight time. This will make it so much easier for us...Scotty's sleeping habits have definitely been out of wack and we seem to be walking around like zombies a lot of the time.
To say Thank You to our wonderful nurses and Jake (Child Life, who watched Scotty last week at the Day Hospital while Tom was in the ER) I made them some Carmel Apples which they love so much....we appreciated all their help (and concern) with Tom and Scotty.

Now for Mr. Scottyman....what can I say except he did great today. Pharmacy was able to get the Elaprase mixed quickly this morning so we were home by 6:30pm! Boy that was nice... he is now relaxing by taking a nice hot shower with daddy! We are currently trying to get him a bath seat for his bathtub...he spends so much time in there I really think he needs some back support. His CCS therapist gave us one to bring home and try and it was almost perfect except too long. So hopefully we can find one similar but shorter so Scotty's knees aren't in his chest during his baths.

I'm still working on getting multiple procedures done for Scotty under one sedation...I had this great nurse in the Day Surgery Dept really trying to help me coordinate this but she ran into the same road blocks I did...everyone has certain days for their testing so I just did what I had to do and contacted Patient Relations and said this is insane I need help. My friend Barbara works in that department and hopefully she can help get this coordinated.

I can't believe how quickly summer has gone by! After we return from our coast trip Scotty will start back to school the following Monday! I'm considering shorter school days for him this coming year unless I can get his sleeping back on track.. I just can't see sending him to school tired. I hate waking him up...if he's sleeping then to me that means he's tired. We tried Melatonin twice last week but the next day he cried...on Sunday he cried all day (WITH TEARS) we were just beside ourselves because Scotty has never ever done this. Now it also could of been gas/constipation and it did stop so I tried the Melatonin again last night at a lower dose and today he has been fine. Maybe we've got this figured out! But just in case we haven't I'm going to bed now to get a few hours of rest in case Scotty starts a party tonight or early morning. I'm really beginning to enjoy QVC! NOT

Thank all of you so much who called, emailed and left such nice comments in Scotty's guestbook about Tom. We are so blessed to have such wonderful friends and family.

Have a great weekend!
Kim

Friday, August 1, 2008 0:18 AM CDT

UPDATED FRIDAY NIGHT:
I just wanted to let you know that Tom was discharged and is now at home. They ran several tests and could find nothing wrong. He has to follow up with his local Dr. on Monday so I am going to ask for some additional tests to be ran just to be safe.

Hello to our wonderful Friends & Family

Once again I am very sorry for the sporadic updates.

Tom has been working the last 7 nights and Scotty's
sleep schedule decided to go wacko which means mommy & Scotty haven't got much sleep. With that being said when Tom came off his shift yesterday morning we decided he would take Scotty to treatment today so I could get a little extra rest then get my house cleaned.
Tom is pretty good about keeping me updated via text messages when he takes Scotty to treatment I have learned from Scotty's last reaction a month ago when Tom took him that when I receive a phone call something just isn't right and that is what happened this morning at 10:30. I had slept in and just got up about 1 hour earlier and Tom called my cell phone YIKES he immediately told me Scotty was fine that it was him who wasn't feeling too well????
He said he felt dizzy and parts of his body felt numb! He said that I should probably drive to the hospital. So Tom's sister and brother in law drove me to the hospital so we wouldn't have 2 cars there. Scotty's nurse was kind enough to be watching him closely and taking his bp but they decided to call Stanfords ER dept to come pick him up and take him back to their ER. When we arrived Jacob from Child Life was feeding Scotty lunch and had been sitting with him since they wheeled Tom off. THANK YOU JACOB!
Scotty was a perfect boy for him... we got settled then I headed over to the Stanford hospital (they are connected) while Tom's sister stayed with Scotty. Tom was alert and doing fine and said he hadn't had any numbing episodes within the last hour. They were running several tests on him which mainly included heart testing Tom's dad had passed away from a sudden heart attack so with that history they were very concerned. The first test of his heart came back fine no damage meaning no heart attack (thank god) but they wanted to run it 2 more times 6 hours apart which meant they were going to keep him overnight. They also wanted to run a stress test on him Friday so this would be fine. They moved him to a room then I went back to check on Scotty who was doing just fine with his Aunt Nancy. When Scotty was finished we headed back to Tom's room...he had just napped a bit and was eatting dinner he said he felt well enough for me to go ahead and take Scotty home tonight and he would drive the car home tomorrow. I was going to stay at a nearby hotel but he assured me he'd be fine and to get Scotty home where he would be nice and comfortable and able to sleep. I think Tom just may have been more tired than he thought coming off the night shift and with a little anxiety or stress may have caused this...at least he was in the right place to have any medical issues! I will update you as soon as I talk to him in the morning.
We love and miss you Tom and wish you were home with us. xoxoxoxoxox

I finally posted some pictures from Vancouver on Scotty's slide show.. I hope to have more pictures on another camera that include photos of my friend Melissa and her sisters. Also I hope I took photos one night at the MPS Awards Dinner of Scotty and Beth Karas. Beth is a great TV reporter for CNN/Court TV. We had met her about 5 years ago at the Conference in Florida and she was amazed we were from Modesto because she did so much coverage on the Scott Peterson case here. Anyways she is a wonderful person who had 2 siblings affected with a Lysosomal Disease and that night at dinner Scotty just grabbed her hand and she stood there holding hands with him for about 20 minutes...she is so sweet.
Hopefully I can post some photos soon from our 4th of July barbecue...Scotty had such a great time with all his cousins, Aunts & Uncles.

Thank you for checking up on Scotty... we really do appreciate your visits and love all of you.
hugs and much love
Kim

Friday, August 1, 2008 0:18 AM CDT

Hello to our wonderful Friends & Family

Once again I am very sorry for the sporadic updates.

Tom has been working the last 7 nights and Scotty's
sleep schedule decided to go wacko which means mommy & Scotty haven't got much sleep. With that being said when Tom came off his shift yesterday morning we decided he would take Scotty to treatment today so I could get a little extra rest then get my house cleaned.
Tom is pretty good about keeping me updated via text messages when he takes Scotty to treatment I have learned from Scotty's last reaction a month ago when Tom took him that when I receive a phone call something just isn't right and that is what happened this morning at 10:30. I had slept in and just got up about 1 hour earlier and Tom called my cell phone YIKES he immediately told me Scotty was fine that it was him who wasn't feeling too well????
He said he felt dizzy and parts of his body felt numb! He said that I should probably drive to the hospital. So Tom's sister and brother in law drove me to the hospital so we wouldn't have 2 cars there. Scotty's nurse was kind enough to be watching him closely and taking his bp but they decided to call Stanfords ER dept to come pick him up and take him back to their ER. When we arrived Jacob from Child Life was feeding Scotty lunch and had been sitting with him since they wheeled Tom off. THANK YOU JACOB!
Scotty was a perfect boy for him... we got settled then I headed over to the Stanford hospital (they are connected) while Tom's sister stayed with Scotty. Tom was alert and doing fine and said he hadn't had any numbing episodes within the last hour. They were running several tests on him which mainly included heart testing. Tom's dad had passed away from a sudden heart attack so with that history they were very concerned. The first test of his heart came back fine no damage meaning no heart attack (thank god) but they wanted to run it 2 more times 6 hours apart which meant they were going to keep him overnight. They also wanted to run a stress test on him Friday so this would be fine. They moved him to a room then I went back to check on Scotty who was doing just fine with his Aunt Nancy. When Scotty was finished we headed back to Tom's room...he had just napped a bit and was eatting dinner he said he felt well enough for me to go ahead and take Scotty home tonight and he would drive the car home tomorrow. I was going to stay at a nearby hotel but he assured me he'd be fine and to get Scotty home where he'd be nice and comfortable. I think Tom just may have been more tired than he thought coming off the night shift with a little anxiety or stress may have caused this...at least he was in the right place to have any medical issues! I will update you as soon as I talk to him in the morning.

I finally posted some pictures from Vancouver on Scotty's slide show.. I hope to have more pictures on another camera that include photos of my friend Melissa and her sisters. Also I hope I took photos one night at the MPS Awards Dinner of Scotty and Beth Karas. Beth is a great TV reporter for CNN/Court TV. We had met her about 5 years ago at the Conference in Florida and she was amazed we were from Modesto because she did so much coverage on the Scott Peterson case here. Anyways she is a wonderful person who had 2 siblings affected with a Lysosomal Disease and that night at dinner Scotty just grabbed her hand and she stood there holding hands with him for about 20 minutes...she is so sweet.
Hopefully I can post some photos soon from our 4th of July barbecue...Scotty had such a great time with all his cousins, Aunts & Uncles.

Thank you for checking up on Scotty... we really do appreciate your visits and love all of you.
hugs and much love
Kim

Thursday, July 17, 2008 11:35 AM CDT

I am so sorry it has been so long since I have updated Scotty's Journal.

I know I still need to post new pictures from our Vancouver trip and our 4th of July barbecue. Scotty had so much fun playing with his cousins who were here over the 4th of July holiday. It was sad to see them leave to go back home to San Diego.

Scotty has caught his first chest cold in over 3.5 years so he will not be getting his treatment today. Daddy took him to the Doctor on Monday and they put Scotty on a 5 day antibiotic. Yesterday he got a lot of rest so hopefully this has helped him but I think we will probably take him to Dr. tomorrow for a follow-up visit.

Thank You so much for checking up on our little Scotty man. We've had so much going on for the last month I haven't been able to write in everyone's guestbook but please know that I am reading your journals.

Hugs and Much Love,
Kim

Wednesday, July 2, 2008 9:40 PM CDT

Tomorrow will be Scotty's first treatment since his reaction a couple of weeks ago...keep your fingers crossed that all goes well.

We had an absolute wonderful time at the Conference in Vancouver. My plan is to update you with details during treatment tomorrow.

Hugs,
Kim

Monday, June 23, 2008

I just wanted to update you to let you know that Scotty is home and doing great. He was pretty wiped out because Thursday night while in the hospital he didn't sleep a wink! By Friday morning I was exhausted and Scotty was still wired so I texted Tom who slept elsewhere in the hospital that night (1 parent in room at night)to please come back to the room...I think it was 5:40 am. When he arrived he got a wagon and took Scotty for a nice long walk for quite a while, I tried to sleep but by that time I couldn't. When they returned Scotty ate some breakfast then finally fell into a deep sleep around 9:00 am. He slept through the Doctor's rounds that morning.
Because Scotty had so much of the Elaprase left and I didn't want to waste it plus the fact he would be missing the following weeks treatment I was able to persuade everyone to let Scotty finish up his treatment. I was pleading my case via cellphone because I had to get back home for an appointment early Friday afternoon so Tom and Scotty were still at the hospital. I called Tom and talked with the nurse to let them know it was a go to finish. When I called back a second time Tom told me that Scotty was still in a very deep sleep which began throwing up some red flags for me. I really think the reason for his reaction on Thursday had to do with him being so tired from being awake the night before and now here he was extremely tired again so Tom and I decided instead of chancing another reaction that we would not continue his ERT that day. I feel bad about him missing next weeks also because of us being in Vancouver but better safe than sorry!
Tom and Scotty arrived home early Friday evening and Scotty has been fine all weekend with the exception of trying to catch up on his sleep. By Sunday he was fine and out shopping with daddy for our Vancouver trip.

I guess we will never be out of the woods on these reactions. Why after 8 months of being reaction free this one happened...no one is really sure but hopefully I'll find some answers at the Conference in Vancouver. Not only is it a Family Conference but it is also the International MPS Scientific Conference which means lots of great Doctors very familiar with MPS there whom I can talk to about this. Most of which are very familiar with the little boy from CA having the reactions.
The great news is that Scotty's Shire Rep Jeff is still meeting with Scotty's local pediatrician this Tuesday to discuss Scotty getting ERT locally!

Thank you all for checking up on our little Scottyman! We appreciate your love and concern so much.

See you when we return from Vancouver!
Kim, Tom and Scotty

Thursday, June 19
Hi Everyone

Today Tom volunteered to take Scotty to treatment for me and with our upcoming trip to get ready for I took him up on his offer. When Tom and Scotty left this morning I told Tom that I heard Scotty in his room all night having a party...just laughing and having a good time all night so he was going to be very very tired today. Tom texted me when they arrived at hospital and said Scotty slept the whole way and was still sleeping.. he almost slept through the port access. They started treatment approx. 10:30 and Scotty still sleeping.

In the meantime I was at home emailing with Scotty's Shire Rep who was letting me know that he had put another call into Scotty's pediatrician because we were beginning to move forward with transferring Scotty's ERT to our local hospital. It had been 8 months since Scotty's last reaction so everyone felt good about making the move.

About 1:30 I get a call from Tom telling me that Scotty had a reaction!!! I couldn't believe it... same kind of reaction as the last few where he begins to shake and his fingernail and toenail beds turn purple. Fortunately no issues with his breathing. Tom alerted the nurses soon enough that a couple of doses of benadryl was all that was needed. It did take him about 30 minutes to be his happy self again. They had only reached a rate of 12 when Scotty had his reaction so he didn't get much of the Elaprase at all. Tom told me that they were going to admit scotty overnight for observation so I went ahead and got a few things together and headed to the hospital. Scotty was happy as can be when I arrived around 4:00. They finally got him up to his room around 5:30. I am hoping they will finish the Elaprase in the morning... I heard Scotty's Dr. said that he would be ok with him finishing as long as the Allergy Dr. was ok with it. The word tonight is the Allergy Dr. doesn't want to but I haven't talked with them yet. Scotty will miss next weeks treatment because we will be in Vancouver so I really want him to get the rest of this Elaprase. I will keep you posted.
Thanks for checking up on Scotty!
Hugs,
Kim

Now I know I have mentioned in some past journals about Scotty wonderful nurse Michele who does the crazy triple triathalons! Well she is doing another crazy thing starting next week.. She is on a cycling team that will be biking across the United States (3000 miles) in 9 days!

Michele is second frm the left

This is definitely craziness! but I know Michele can do it because she is AWESOME.
They are raising funds for Habitat for Humanity to build a 8 unit complex in the Bay Area. She told me that she would also do this in honor of Scotty and other children at the Day Hospital and she was going to put their names on the back of her Jersey.... HOW GREAT IS THAT!
Here is the link to their website...check it out and see the route they will be cycling. I think there is another link with a larger map so you can see what towns they will be riding through..if it yours be sure to cheer them on!

Thank You all so much for checking up on Scotty. We appreciate your love and support so much.
Love,

Sunday, June 1, 2008 8:11 PM CDT

Hi Everyone

I hope you all had a great week.

Scotty had Physical Therapy on Tuesday and his therapist Cheryl is doing such a great job! Scotty just lets her do pretty much anything she wants as long as she is not obstructing his view of his portable dvd player. What she does first is puts heavy hot packs on all his joints and let them sit there for a while (he actually lays down for her) and then she does some really deep stretching. After that he begins some exercising..he gets on an exercycle that really stretches out his arms and legs some more, he jumps on a small trampoline that really helps stretch his heelcords out. She gets him to stand from a very low seating position (many times).
Cheryl does a lot of heelcord exercises with him...usually by the time we are ready to go he is walking flat footed and his joints do seem looser. We also noticed he does walk more flat footed with shoes on so I am really trying to keep him from taking his shoes off all the time. I think with this one real deep Physical Therapy a week and us stretching him the rest of the week that we can keep Scotty from losing any more range of motion. At least that is our plan.

I don't know if I had mentioned that I am once again working on trying to coordinate different procedures for Scotty under one sedation? One being an ABR test which he has never had. Well the Audiologist at Stanford will not let us schedule an ABR before he has the standard hearing test first. Right now ABR's are being scheduled for August so when they told me the first appt they had open on a Thurs (do before ERT) was not until the end of July i wasn't happy because this would put the ABR out even further. But I took the appointment because I had no other choice. The other tests would just have to wait because I wasn't doing them without the ABR. Tom went with us Thursday to treatment...this gave me a chance to run Scotty's referral authorization over to the Audiology Dept so we were looking at available dates again and she said they had one available the next morning (Friday) at 9:00 am...so my mind starting working and I told her we'd take it. I went back to Scotty's room and told Tom we were staying the night..fortunately he is off work until next week and I keep an emergency overnight bag in my car. The Patient Relations Dept at the hospital found us a hotel room at a decent rate.. (we would of paid more in gas to drive back the next morning).
After treatment was over that day we decided to walk Scotty over to the big water fountains at Stanford hospital...they have ducks there that Scotty loves to chase. I thought this would be some good exercise for him being that he had been laying or sitting all day. (It took us 3 hours that morning to get to treatment that morning). We also walked through the beautiful gardens... I have put some of the pictures on his slide show. So after the nice long walk we headed over to the hotel and got settled in. The next morning we were out the door at 8:30 for Scotty's hearing test.
......he did so awesome!
He was a perfect and COMPLIANT
little boy. Tom was with him in the room...I was in the booth with the Audiologist and it was funny at one point they point little headphones in his ears (Tom couldn't hear the sounds at that point) but she started playing the Barney song and he starts to look around the whole room like I hear the song where's the video..it was cute. then he started saying Barneyyyyyyy and Babyyyyyy.
He did so well BUT as you know even with him being compliant you can't rely on these test with developmentally delayed children so she said I will request the ABR for you. (wow that is a surprise) The Audiologist was really great... She felt that with the readings she got that he should have hearing aids but wanted to have more accurate readings first ...hence the ABR. I really think Scotty would wear hearing aids and I'm excited for him about hearing better! Now we can get back to scheduling the sedation and getting this all done.

After the appointment I remembered that my friend Vanessa and her son Mickey do ERT at the Day Hospital on Fridays so I called her cell and sure enough they were already there so we went to see them....Scotty was a little confused at first...being at the Day Hospital ..he even got a little upset when we didn't walk towards his regular room but he adjusted quickly to just being a visitor. It was great to see Mickey and Vanessa. Mickey is doing so well...he's non-verbal but says a lot with his beautiful eyes. We had a great visit and actually were there when they finished (Mickey's rate is much faster than slowpoke Scotty's) so we were able to walk out together which was great because I have only seen Mickey in a wheelchair..he did great walking. I am so excited because they will also be attending the conference in a few weeks in Vancouver.

Now I know I have mentioned in some past journals about Scotty wonderful nurse Michele who does the crazy triple triathalons! Well she is doing another crazy thing starting next week.. She is on a cycling team that will be biking across the United States (3000 miles) in 9 days!

Michele is second frm the left

This is definitely craziness! but I know Michele can do it because she is AWESOME.
They are raising funds for Habitat for Humanity to build a 8 unit complex in the Bay Area. She told me that she would also do this in honor of Scotty and other children at the Day Hospital and she was going to put their names on the back of her Jersey.... HOW GREAT IS THAT!
Here is the link to their website...check it out and see the route they will be cycling. I think there is another link with a larger map so you can see what towns they will be riding through..if it yours be sure to cheer them on!

Thank You all so much for checking up on Scotty!
Have a wonderful weekend!

Tuesday, May 20, 2008 1:42 PM CDT

Hi Everyone

I am very very sorry for being so behind on my updating. I've had a lot of things going on, Tom has been working a lot of overtime and now things are finally starting to settle down. I've attempted a couple of updates but for some reason got distracted in the middle of it and never was able to finish.

The good thing is no news is good news. Scotty has been doing fine with the exception of allergies. He does seem a little more tired recently but I think that is from our very hot weather! So we have to be very good and make sure all the doors are locked so Scotty can't go outside and sit in the hot sun that he loves to do so much. I am also trying to coordinate a few annual/baseline procedures for him to be done under one sedation. I don't know why this is so hard to get done at a hospital like Stanford but trust me it is.

We had a great International MPS Awareness day at the Day Hospital. It was Scotty's treatment day so I decided to make our nurses and Scotty's Doctor some carmel apples which they love. Attached to the ribbon was cards I had made and printed out with MPS links. Here are some pictures.

We hope you all have a fun & safe Memorial Weekend!

Thank you for checking up on our little Scotty man.
Hugs,
Kim

Friday, April 25, 2008 7:14 PM CDT

Hi Friends

I hope you all had a good week. Ours was good and once again very quick.
We did Scotty's treatment on Wednesday this week and it went well. It was his 3rd week without the premeds that we use to give him the night before treatment and so far so good. I knew he wouldn't have a problem not taking that dose because he did it before for quite a while.

On Thursday Scotty's class went to see a presentation of Dr. Suess Green Eggs and Ham. The program was from 9:00am to 11:00am and because of limited seating parents could not attend. Of course all morning I was wondering how he was doing and if he enjoyed the show so I was very excited to see an email from his teacher that same day around noon. He emailed me to let me know that Scotty had a great time at the performance. He said Scotty sat the whole time in his own seat between himself and his 1:1 Aid. He said he really enjoyed all the music and the dancing.. He also thanked me for rearranging Scotty's treatment day so he could attend which I thought was very nice.
I'm happy Scotty enjoyed it!

I hope you all have a great weekend. Thank you for always stopping in to check up on Scotty and taking the time to sign his guestbook...we really appreciate it.

Thank you all for your prayers for Chippy
and his family... what an emotional time for them. Chippy is a fighter and apparently not ready to be with Jesus! They transported him home yesterday and will continue caring for him there. I'm so happy they can all be together at home. Laurel & Steve are amazing parents.

Please continue your prayers for our friend Chase..

Saturday, April 19, 2008 9:02 PM CDT

Hi Everyone

Sorry it took me so long to update. Scotty's treatment went great last Thursday. He did not sleep at all the night before because I think mommy let him take too long of a nap Wednesday early evening. He was just so tired from his allergies due to the wind on Mon, Tues and Wed that he was exhausted so I let him sleep...really how do you wake them up when they are that tired?? So he woke back up around midnight and was refreshed and ready to go! Tom stayed up with him till 4:00am then had to get some rest because they had scheduled him to work OT on Thursday (it was his day off)so I got up with him and then we headed off for treatment around 6:40am. Once he gets settled in at the Day Hospital he is now ready to sleep! He slept from about 10 to 2. Being that this was his first week without the 12 hr premeds and me giving him his premeds that morning the nurses were a little nervous....actually a lot nervous. They kept asking if I thought his face looked flush, if his lips looked a little swollen and why was he sleeping so long! I explained many times about the night before but that didn't ease their concern. I was glad to finally see Scotty awake just to put them all at ease. Once awake he was his usual happy self and everyone was happy.
This coming week Scotty will be having his treatment on Wednesday instead of Thursday. Thursday his class is going on a field trip to the Gallo Center for the Arts for a presentation of Dr. Suess "Green Eggs and Ham". I thought Scotty would really enjoy that so the Day Hospital was able to get us in on Wed. They said Scotty can't miss Green Eggs and Ham!

Thank you all so much for continuing to check up on our little Scotty man. We appreciate it so much.

Thank you all for your prayers for Chippy
and his family... what an emotional time for them. Chippy is a fighter and apparently not ready to be with Jesus! They transported him home yesterday and will continue caring for him there. I'm so happy they can all be together at home. Laurel & Steve are amazing parents.

Please continue your prayers for our friend Chase..

Saturday, April 19, 2008 9:02 PM CDT

Sunday, April 13, 2008 11:52 AM CDT

Hi

I hope you are enjoying your weekend. It is absolutely beautiful here...yesterday it got up to 88 degrees!
better than the low 90s that they were predicting because that is just a little too hot too soon!
Tom is working this weekend so Scotty & I are just hanging out...staying close to home... Hopefully we will get out for a bike ride today..my plan was to do it yesterday but I got caught up in some spring cleaning. Scotty did go out shopping with daddy before he left for work which he always enjoys.. they go to the "man store" Orchard Supply Hardware! They must all know Tom as much time as he spends there.. he refuses to shop at Home Depot which is right around the corner. Whateverrrrrrrrrr

Scotty's treatment went well last Thursday. My very good friend Jane came to visit us. Here are some photos of her and Scotty. Thank you Jane for visiting! We love you lots.

Vicki the Genetics nurse stopped by during treatment. I had sent her an email last week because I knew she would be writing new orders for Scotty (need new one every 30 days)for his treatment next week. As most of you know I hate having Scotty taking the steroids but I also understand the Doctors concerns about minizing Scotty's risk of a reaction. I have to say that most of Scotty's reactions have happened when we tried to increase Scotty's infusion rate. My thought process has always been how long do we have to wait to try and increase his rate again?? The protocol for infusing is to start at 8ml/hr and then every 15 minutes the rate would increase until it maxes out at 40ml/hr. Scotty starts out at 4ml/hr and increases every 30 minutes to a max of 24ml/hr. So you can see how much slower Scotty is.
So it was a couple of months ago that I had a light bulb moment when I was talking with Dr. Muenzer at the Las Vegas convention. We were discussing my concerns about Scotty's treatments/reactions/premeds and whether or not home infusions are in Scotty's future.... Dr. Muenzer said there is no real answer to any of this because it is all still new but I needed to decide what was my main concern???????? Well besides the reactions themselves it is the steroids. So the light went...leave the rate alone and work on reducing the 12 hour premeds. Because he is still getting the premeds again 1 hour before I feel safe with this decision. So this last month we have been reducing the steroid we give him Wed. night each week by 1/4 dose. This next Thurday he will now only get the premeds one hour before treatment.

They have been giving Scotty these premeds by IV since last Sept. Prior to that I was giving them to him orally in a drink. Of course when we started doing it by IV this increased our time at the hospital. So another change this week will be that I will be going back to giving Scotty his premeds 1 hour before treatment starts. We are in the car at this time so we just mix the meds with some juice and put it in a water bottle for him and he drinks it on the drive.
I don't know if we'll ever not have premeds because of Scotty's reaction history but I feel good about eliminating that dose 12 hours before. He went 4-6 months last year without that dose so I think he will be fine.

Thank you all for your prayers for Chippy
and his family... what an emotional time for them. Chippy is a fighter and apparently not ready to be with Jesus! They transported him home yesterday and will continue caring for him there. I'm so happy they can all be together at home. Laurel & Steve are amazing parents.

Please continue your prayers for our friend Chase..
He is also back home from his recent 2nd trip to the hospital for the new feeding tube. It was not a good hospital stay! If you have a chance read Rosemaries
recent journal entry.

Thank you all so much for continuing to check up on our little Scotty man. We appreciate it so much.

Friday, April 4, 2008 3:31 PM CDT

I wanted to move this prayer request up to the top of my journal because my dear friends really need them today. I went to check up on my little friend Chippy this morning hoping to see that they were going to send him home this weekend but this is what I read instead...it is heartbreaking.
Friday, April 4, 2008 6:44 AM CDT

Chip did not have a very good night. He has continued to struggle breathing. There is nothing else that they can do for him. They will be re-accessing his port to give him medications to help him relax. Then we will be taking off his bipap and letting him go home to be with Jesus sometime this morning. Please pray that Chippy goes peacefully. Give Steve and I strength for the days ahead.
In Christ,Steve,Laurel,David,Chip and Amy Radius

Please keep them all in your Thoughts and Prayers.
Thank You!

I hope you all had a great week.

Things have been pretty quiet here. We got our schedule back on track with Scotty returning to school on Monday. It was so nice having him home with me....I missed my little Scottyman when he went back to school and he only went 3 days. He stayed home today because he had a rough night sleeping last night. He slept in very late this morning and seems to be just fine. He's dancing to his Barney video as I type this update. Scotty's appointment with the PT Therapist last Monday went well. She needs to write up her assessment and submit it to our Ins to see how many visits we can get Scotty. Keep your fingers crossed.

Scotty's treatment went great yesterday. Daddy took him because I had to get my online Traffic school done! (Yes I have a lead foot..no doubt about that. I got it on our way home from treatment last Dec about 5 miles from home. It took me all day but I got it done.. test and all. One more thing I can check off my "to do" list). So Tom and Scotty had a good day at treatment. Tom sent the picture below to me via cell phone...I thought it was so funny and cute.

LPCH Pet Therapy
In Loving Memory of Pumpkin Seed (2001-2008)

Please continue your prayers for our friend Chase..
Rosemarie is so Thankful for all your prayers.

Thank you all so much for continuing to check up on our little Scotty man.
Have a great weekend.

Sunday, March 30, 2008 8:04 AM CDT

I hope you all had a wonderful & blessed Easter
We had a great time at the Coast. It was so beautiful & sunny. We all caught up on some much needed R&R I think it was Easter morning that we all slept until 11:30 am. Now I never sleep that late..and I even fell asleep the night before at 7:30. Scotty slept late every morning...I was beginning to wonder if he wasn't coming down with something but knew he was ok when he woke up at 6:30am the first morning home. Maybe it is just hearing the ocean that makes up all sleep so well. Scotty seemed to like his Easter Basket which had a couple of new movies in it for him and some other goodies. We never really put much candy in it for him because he really doesn't eat it...if we do put any in it ...it is for our benefit only..yes we rob his Easter Basket..shame on us.
We left our beautiful coast haven for home late Tuesday afternoon. When we arrived home we quickly unloaded and cleaned up the trailer so Tom could take it back to storage. Wed., Thurs and Fri were pretty busy....Tom went back to work early Wed. morning and the installation of our new dual pane windows also began early Wed morning. They installed 8 Wed. and did the remaining 8 on Friday (because Thursday was treatment day). We love our new windows..they look so nice.

Scotty's treatment went well on Thursday. We actually arrived early that morning and I was thinking wow maybe we'd get home before 7 that night but you know Murphy's Law..it didn't happen. The Day Hospital seemed to be a little behind so we actually ended up starting about the same time we normally do. We did have a great surprise...Visitors! Yeahhhhhhhhh....Thank You Marey and Ali for stopping by after Ali's appointment. We love you guys..and Marey we really hope you got rid of your headache. Watch your mailbox....I told you I would mail you something.

I forgot to mention some sad news we learned last week during Scotty's treatment..... one of our favorite Pet Therapy handlers Laurie, informed us that one of favorite little pets had past away suddenly. Pumpkin Seed was Laurie's sweet 7 year old rabbit. We loved Pumpkin Seed so much...it was sad news. I know Laurie was having a tough time because a lot of the kids were expecting to see Pumpkin Seed since Easter was a couple of days away and she had to give them all the bad news.

In Loving Memory of Pumpkin Seed (2001-2008)

It will be back to school for Scotty on Monday morning...well late Monday morning because he has an OT/PT consultation through our private insurance. Hopefully they will agree to provide Scotty with his much needed Therapy.

Please continue your prayers for our friend Chase..
Rosemarie is so Thankful for all your prayers.

I also have another dear little friend
Chip who is in the hospital not doing well. They thought for sure he was going to be an Angel this morning but he is still fighting to stay here with his family. His mom Laurel was the first MPS mom I ever spoke with after Scotty's diagnosis. She has always had a special place in my heart as have her boys David & Chip (and daughter Amy & husband Steve). Please say prayers for Chippy and his family and if you have time please stop by his website and let his family know you are praying for him.

Thank you all so much for continuing to check in on our little Scotty man. We love you all very much. Your messages in Scotty's guestbook are so appreciated

Sunday, March 30, 2008 8:04 AM CDT

Saturday, March 22, 2008 11:28 AM CDT

Hi Friends

Tom, Scotty & I are headed off to the Coast with our trailer through Tuesday. We hope that you all have
a Blessed and Happy Easter.

Thank you all so much for always caring enough about our Scotty to check up on him weekly. You are such wonderful friends...I don't know what I would do without you.

Please continue your prayers for our friend Chase.. he was able to come home via ambulance on Friday which is great news...but will still need your prayers.
Rosemarie is so Thankful for all your prayers. Here is Chase's website if you'd like to leave them a message. www.caringbridge.org/visit/chaseveliz

I also have another dear little friend (Chip)who is in the hospital not doing well. His mom Laurel was the first MPS mom I ever spoke with after Scotty's diagnosis. She has always had a special place in my heart as have her boys David & Chip (and daughter Amy & husband Steve). Please say prayers for Chippy and his family. Here is his website in case you'd like to leave them a message.
http://www.caringbridge.org/mi/radiusd/index.htm

Thank you all so much for continuing to check in on our little Scotty man.
I hope you all have a wonderful Easter weekend.

Saturday, March 22, 2008 11:28 AM CDT

Saturday, March 15, 2008 2:23 PM CDT

Hi

Wow what a very quick week! They just seemed to fly by now. Soon it will be Easter then summer! Too Fast.
I was out of town last Friday until Tuesday so that is part of my week flying by. Scotty stayed home with daddy while I was gone and they had a great time together. Tom is on a Trap Shooting league and he had to shoot Saturday while I was gone...we really don't have anyone to watch Scotty so Tom took him with. He said he did great just made sure he had him strapped in his stroller so he couldn't wander around (not a good thing when people are shooting guns) and sat his dvd player next to him. Tom has friends that also shoot so they were right there with Scotty when it was Tom's turn to shoot.
Tom is such a great daddy! Scotty loves him so much.

Scotty's treatment went well... hopefully next week we will begin reducing his premeds that we give 12 hours before. This includes a steroid that has always been an issue with me. I hope after eliminating the 12 hour premeds that we can begin to look at doing his infusions at home or at least a local hospital.

Please please continue your prayers for our friend Chase.. he is still in the hospital. It's been a very rough time for my good friend Rosemarie and her family. He still does not have his feeding tube but he is getting TPN so he is getting his nutrients. Now he has a blood infection, bacterial from either his port or shunt. He is on a new med that has reduced his thrashing but not completely. I saw this all first hand....and it was the hardest thing I have ever been through....emotionally and physically. They have been there for 3 weeks now... Rosemarie is also emotionally & physically exhausted.. I really don't know how she is doing it. Well I do... she's doing it for her son..Chase She is not giving up and not falling for the line that "it's the disease" a mom knows when something else is going on.
Rosemarie is so Thankful for all your prayers. Here is Chase's website if you'd like to leave them a message. www.caringbridge.org/visit/chaseveliz

Thank you all so much for continuing to check in on our little Scotty man.
I hope you all have a wonderful weekend.

Friday, March 7, 2008 1:58 PM CST

Hi Friends
I hope you all had a wonderful week and are ready for a nice relaxing weekend
We all are doing well. Last Sunday Scotty and I took a drive to meet my friend Margie who I went to Las Vegas with in Oakland. She had to deliver some paperwork over there so we thought since Tom was working we'd take a drive and meet her for lunch. It was great to see her again. We ate lunch then did some shopping at the near by mall. Scotty was a good boy as always.

Since Tom is off work this week I asked him if he would take Scotty to treatment so I could finish up my taxes. I keep putting this off and want to get it done and off my list. He said no problem so he and Scotty headed out yesterday morning around 6:30. When arrived at the Day Hospital he called to say things very very busy. I knew right then it would be a long day for them! They didn't start the infusion until 12:00. Every thing went great with no problems. They arrived home last night around 9:00. And yes I did get my taxes done!

I would still like to ask for your prayers for our friend Chase.. he is still in the hospital. It's been a very rough time for my good friend Rosemarie and her family. The Neurosurgeon still does not want to do any kind of intervention. He said there is nothing to be done..it is the disease causing this.

Rosemarie is so Thankful for all your prayers. Here is Chase's website if you'd like to leave them a message. www.caringbridge.org/visit/chaseveliz

Thank you all so much for continuing to check in on our little Scotty man.
I hope you all have a wonderful weekend.

Thursday, February 28, 2008 11:11 PM CST

Hi Dear Friends
I hope this update finds you all well.
Things have been a little hectic around here since I arrived home from Las Vegas. I started a terrible cough and finally got rid of it just this week. I think it was the flu trying to come on because it is going around. Fortunately my symptoms were the cough, body ache and just plain tired no tummy aches. I finally got over this just in time for Scotty's IEP meeting. Which I think went well. It was a long one because it was his Triennial so we had to go over about 4 assessments. He's doing great in class and really loves his teacher/aids/classmates. I guess as a special needs mom I just never think he's getting the education that he deserves or is in the correct placement (all other children can read & write) but I think some times I need to step back and ask myself is Scotty happy in his class and for the most part he is. hopefully with a few more tweaks and some different goals he will even do better. Time will tell as will my classroom observations! He has a great team of people working for him and that is always a plus. Scotty's teacher called me yesterday and told me Scotty had a perfect day! Considering 10 minutes before he boarded his school bus that morning he was extremely mad at me for clipping his fingernails. He hates that and it usually puts him in a bad mood. But I guess not yesterday which is great. He really is trying so much harder to talk...he really watches your mouth when you talk to him and tries to repeat the words back. I have to share with you that the other night I walked into the living room where he was sitting on the couch and he said to me so clearly "Hi Mommy"! It totally and completely melted my heart.

Scotty's treatment went well today....although for some reason it just seemed liked a longer day than usual. The Day Hospital was busy so things were a little choatic. I guess they can be as choatic as ever as long as Scotty has a great treatment with no reactions. We arrived home about 8:30 tonight and now Scotty is taking a nice hot bubble bath..

I wanted to ask a special favor for some prayers...one of my very best friend's son (Chase)has been in the hospital since Monday. He is 16 yrs old and also has Hunter Syndrome.... He is not doing well at all... he went in for surgery this morning for a bolt that would measure the pressure in his brain. We were hoping that this would be very high and the cause of his recent decline but the Doctors told his mom (Rosemarie) that his brain is shrinking and dying off due to the build up of the MPS storage. It is just taking over his brain and killing his brain cells thus causing his severe neurological issues which include not being able to eat because his brain doesn't know how or even drink. They are scheduled to do a MRI on Monday to see if there is any compression on his brain stem. I know she would appreciate all your prayers. Here is Chase's website if you'd like to leave them a message. www.caringbridge.org/visit/chaseveliz

Thank you all so much for continuing to check in on our little Scotty man.
I hope you all have a wonderful weekend.

Monday, February 18, 2008 8:07 PM CST

Hi Friends

Sorry for the late update....I hope you all had a wonderful Valentine's Day. Mine was good but it lacked
the best part and that was Scotty & Tom. But I feel if I had to be anywhere else than with my guys Las Vegas was the place! The World Symposium for Lysosomal Diseases Conference that I attended was unbelievable and so worth the trip. On Wed, Thurs & Friday from 8:30-4:00 there were speakers every 15 minutes presenting their research. There were Doctors from the US, UK, Italy, Austria & Canada .. We never met a Doctor and/or researcher who was not willing to talk to us and answer our questions during the breaks and after the meetings had ended for the day. It was great and I really feel like I got some great answers that will help us make some informed decisions in Scotty's medical future.
Of course there were quite of people I had already knew and it so nice to see them again. The makers of Scotty's drug (Elaprase)is Shire and they had a booth there so it was nice to see them and little Scotty man's face on their poster board. I love all the Shire Reps...they are just so wonderful and caring. I look forward to seeing them all again in Vancouver in June.
Now we stayed in the Venetian which is an absolutely beautiful hotel but let me tell you it is HUGE! By the time we walked from our room to the conference hall we were tired and our feet were ready for some massages. Believe it or not from the Tuesday night when we arrived to the Friday night when we left neither my friend Margie nor myself gambled a nickel! Not that I would of if I wasn't mentally & physically exhausted. I'm not a gambler and would much rather spend my money on a great meal than feeding it into some slot machine.
Margie and I did get in a Gondola ride before we left and that was a lot of fun. We had to wait 45 minutes outside the Venetian for a cab to the airport..I noticed a girl a couple people behind us in line who had luggage and most likely was heading to the airport so when we were ready to get into our cab I asked her if she'd like to ride with us and she said sure...as we started talking she said she was there on business at a conference and was finally going home to Brasil after a month of working so I asked her what conference and she said the same one we had attended then I asked who she worked for and she said Shire! I was shocked and said well my son is on your drug...it was a great ride to the airport...Ana Paula Martinho was as sweet as can be and we also found out that besides working for Shire she is also a Pediatric Oncologist! She looks 25! Things happen for a reason and I believe this ride together was no accident. She is planning on attending the conference in Vancouver so I really look forward to seeing her again.
Our flight home that was to leave out of Vegas at 9:40pm did not leave until after 12:00am ...the flight itself was only a little over a hour but each of our drives home were at least another 1.5 hours so we each arrived home around 2:30 am. As I opened my garage door to come into the house here came my little Scotty man around the corner! He had just woke up and wanted a drink...he saw mommy and was so surprised that he ran to me to give me a hug... IT WAS THE GREATEST MOMENT EVER!

I have to also tell you that Scotty's treatment went great last Thursday. Scotty's dose was increased to 18mg for the first time and he did just fine. Tom did a great job as always with Scotty.

Thank You all so much for checking up on Scotty...I'm not sure where I'd be without all your support and encouragement.

Hugs and Much Love,
Kim

Monday, February 18, 2008 8:07 PM CST

Friday, February 8, 2008 7:38 PM CST

Hi Everyone

Well it's Friday night and I hope you all are enjoying the beginning of your weekend. I know we are.

Scotty's treatment went great yesterday. Scotty's new orders were completed and yesterday he finally went back
up to his regular dosage of 16mg. The nursing staff was all prepared in case of a reaction but Scotty did fine. Now next week Scotty's Doctor also put in orders for his Dosage to be increased to 18mgs. This is actually the right dose for Scotty's current weight. Now I've been wanting them to increase to 18 for quite some time but remember that old saying be careful of what you wish for??? Well next week when he gets to go to 18 for the very first time....I WILL NOT BE WITH HIM! Daddy will be
taking Scotty to treatment because I am attending a World Synposium for Lysosmal Diseases. MPS (aka Hunter Syndrome) is one of many diseases that fall under the Lysosmal umbrella. I know Tom will do great watching Scotty during treatment and I know for SURE that I will be texting him the whole time checking up on Scotty.
Scotty's regular nurse Michele was not there she was participating in a marathon in Michigan where I believe it is freezing! I am sure she did great but we really missed not seeing her happy face.

Scotty had an appointment with an Optometrist last Tuesday...it went well being it was the first time we saw this Doctor. I decided to get him an exam with a local Doctor because his teacher and staff felt he was really favoring his left eye which he always has. We discussed our concerns about his left eye with 2 eye Doctors in NC in 2005 and full eye exams were done there. Of what the Doctor (who by the way was wonderful with Scotty) could see by his visual examination Scotty eyes were fine. His left eye does turn out a bit but not always which the Doctor said is good.

Scotty has is quarterly dentist appointment on Monday...we love his Dentist. He is so great with Scotty...not to say Scotty is a happy camper during his cleaning because HE IS NOT but as soon as he is done Scotty is back to his happy self. Scotty's Dentist and his staff along with Tom and my good friend Sherri all help hold Scotty while his teeth are being cleaned. I sit in the waiting room until they are done....I just can't go in there and see Scotty so upset even though he is quick to recover. Thank God for wonderful friends like Sherri who has attended every one of his cleanings to help.

My very best friend Ann who has been staying with us since Thanksgiving moved to her own place last weekend. She has a new job doing what she loves to do. She now lives about 2.5 hours away in the same town as our other friends who have two MPS III daughters. We missed her greatly! Scotty misses her, I miss her, Tom misses her (she loved to cook) and my dog misses her!
We are so proud of Ann to start this new chapter in her life...she is going to do great! I know we will be visiting her often especially now that Tom will be starting his rotating shift again next week which includes working 2 weekends a month so Scotty and I can take some raod trips to Paradise. We were there last weekend and it snowed! It was absolutely beautiful and COLD.
WE LOVE & MISS YOU ANNIE!

Now for my trip to Las Vegas for the Conference. Thank you Tom for getting the time off to stay home with Scotty while I attend! Tom was suppose to start his first night shift in 6 months the same day the conference starts...fortunately he has so much vacation time he was able to take the time off so I could attend. My friend Margie and I are flying out Tuesday night and will return home Friday night. The Conference is Wed, Thurs and Fri. They have some of the greatest Doctors from around the world who will be speaking at the conference. I am so excited to attend! I will give you a full report when I return or maybe even during my stay as I always travel with my laptop.

Have a wonderful weekend and THANK YOU SO MUCH for checking up on our little Scotty man.
Love,
Kim

Friday, February 8, 2008 7:38 PM CST

Friday, February 1, 2008 3:31 PM CST

Hi Everyone

I hope you all are doing well and looking forward to a wonderful weekend.
We are doing great despite the fact that we still are having rain EVERYDAY AND/OR NIGHT!

They are calling for a few showers tomorrow and rain on Sunday....not quite sure what the difference is between a few showers and rain but still doesn't sound good. Maybe we'll see sun Monday!

Things went great yesterday at treatment...his dosage was increased 1mg yesterday and starting next week when new orders are written they are suppose to be more aggressive with the increases...we need to get him back to his regular dose of 16mgs but I also reminded his Doctor yesterday that per Scotty's weight he could be getting the 18mgs which is the full 3 viles. I think for the last 3 months by the time we arrive home Scotty has red raccoon eyes and usually on Fridays his face is flushed... but we have been giving him extra doses of Claritin Thursday night before bed and Friday before school and he does fine. My guess is the redness is from the Benadryl they have been using as a premed by IV...nobody ever believes that connection but me! What matters is Scotty is fine.

I hope you all have a wonderful weekend!
We appreciate you checking in on Scotty...it means the world to us.

Love
Kim

Friday, January 25, 2008 9:25 PM CST

Hi Friends

Wow where in the world do the weeks go! It seems like I was just here updating.
Things are going great....well besides our wet weather. CA is completely drenched! It has been raining for a week and the 7 day forecast on the news shows nothing but rain again! Sunny CA no more.

I don't dislike rain....my first thought when it is raining is Scotty is indoors all day at school. They say they get him up and let him move around and you hope they are telling you the truth. Otherwise he could get pretty stiff sitting all day especially on Fridays after a very long day on Thursday of sitting and laying for his treatment.

Speaking of treatment...everything went well yesterday. They kept Scotty at the same dose as last week. The orginal plan was to increase his dose by 1mg every other week. Meaning our next 1mg increase will be next week. I had emailed his Geneticist and expressed my thoughts of this being an ultra conservative approach especially since all of his reactions have been rate related and not dose related. He did email me back and say he'd talk to his nurse and see if they could come up with a conservative approach rather than "ultra conservative" so it will be interesting to see what they come up with and hopefully implement next week.
My first and most important concern is Scotty's SAFETY and I would NEVER jeopardize it...but if we follow the ultra conservative plan it could take us another 6 months to get back to where we were 3 months ago...and during that whole time Scotty will have to remain on the Steroids as a premed which my 2nd concern. By the time we get home on Thursday night he is puffy and has the beginnings of his constipation all from steroid...this is what we can see happening to him...who knows what kind of long term medical affects he could get. Last night he wasn't the happiest camper when we got home...and I just have to believe it is from the steroids. I will just feel much better when he's off of them. Of course that means getting through the rate inceases which we can't start until we get up to his normal dose. Grrrrrr
I really do appreciate all of Scotty's Doctors and nurses, they really do care about and love Scotty. I Couldn't of asked for a better team for him. I'm sure they cringe when they see an email from me ...thinking what is she going to say now! If it does bother them (and I don't think it does) they hide it very well. lol

I hope you all have a wonderful weekend. Thank you so much for checking up on Scotty. I pray that all of our little friends and their families are doing well. We love you all more than you will ever know.

Many Many Hugs,
Kim

Thursday, January 17, 2008 10:05 PM CST

Hi Friends

Today was a great treatment day!

We left the hospital while it was still light. We arrived there about our normal time and they got Scotty checked in right away.
His port access went perfect..he was such a good boy.
We did increase his dosage by 1mg and next week we will use that same dose...then the following week it will increase again by 2mg. Once we are up to his max dosage then we will start increasing his rate. These are baby steps but I think it gives Scotty's body time to adjust and hopefully keep him from having any reactions.
We were home around 7:15 tonight...Scotty was kind of quiet on the way home but perked up the closer we got. He was pretty funny at one time during our drive home he said "mommaaaaaa" so I looked to see what he wanted and he pointed to his hat which was on the floor board luckily within my reach so I threw it back to him and he put it on and was as happy as could be.
Now daddy is giving him a nice long hot bath
...I'm sure it feels nice on his little body after a long day.

I can't believe tomorrow is already Friday! I'm not sure where the time goes anymore. Last Friday I got to spend the evening with 5 of my girl friends. I hadn't seen a couple of them in a couple of years so we had a great time visiting. Saturday we headed off to visit our friends up in Paradise and came back Sunday night. We had a lot of fun...Scotty got to visit his little girlfriends Katherine and Myranda (we spent New Years with them). Scotty is such a great traveler...he's so content sitting in his seat looking out the window. We didn't even play his portable dvd player on their way there or back...and it's a 3 hour drive each way.

Well I'd better go check up on Scotty & daddy...I'm sure the bathroom floor is all wet.

Thursday, January 17, 2008 10:05 PM CST

Friday, January 11, 2008 12:43 AM CST

Hi Everyone and Happy Friday!

Well life just got much better for me last night...our Earthlink DSL has not worked since the big storm last FRIDAY! About Monday we discovered that the Earthlink dial-up worked so I used that once in a while just to check emails.....dial up was/is so slow and forget trying to visit Caringbridge websites! that takes way too long to upload so I have some serious checking up to do on all our
friends today.

Scotty is doing great...he is so funny. He just cracks us up everyday all day. He is currently I HOPE at the end of his marathon bath! He is one big raisin right now but he's still saying NO when I try to get him out. So it's a big party in the bathroom this morning...the cat, the dog, Aunt Annie and myself just watching Scotty enjoying his bath. I cancelled his bus pick up this morning for school because he went to sleep fairly late so I wanted him to sleep in then I would take him to school myself....in the meantime his teacher called just as an FYI to let me know (per our IEP)that his 1:1 Aid was out sick today so I just decided with her out sick and it raining today meaning they would be indoors all day that I would go a head and keep him home with with me. We'll have our own little play date.

His treatment went well yesterday...we arrived home around 8:00 pm. We didn't do any changes this week...hopefully next week.

Tomorrow Scotty, my friend Ann and myself are driving up to see Margie, Shawn, Katherine and Miranda. They are our friends that were here over New Years. I am so excited we get to visit them...we will come home Sunday. Tom isn't able to go with us because his winter Trap Shooting League begins this weekend. We'll miss him but we know he'll be having a good time.

I hope you all have a wonderful weekend! I am going right now to check up on all of our friends.

Hugs,
Kim

Thursday, January 3, 2008 6:47 PM CST

Hi

I hope you all had a wonderful and safe New Years Eve....ours was perfect. My best friends, Ann, Sherri and her family (husband Greg and her parents who were visiting from Missouri). And our wonderful friends, Margie and Shawn and their beautiful daughters, Katherine and Miranda who both have MPS III along with their friend Debbie who came to help with the girls as they were staying to visit for a few days.. Scotty was surrounded by girls and loved it. We visited, ate, played games (ok..and had a few cocktails) and had a wonderful time...even staying awake to ring in the New Year together. We began watching the Dick Clark countdown about 2 minutes before midnight and got down to the 10 second countdown.....all of us adults with our Champagne glasses in hands ...with our beautiful AWAKE children...counting down wrapped in the seconds till we reached 4 seconds and then...........the channel changed! Yep Mr. Scottyman tricked us all and changed the channel! It was clearly a MPS moment and we all just cracked up...it was so funny and so sweet as we all just starred at him laughing.....
We had a great visit with Margie and family....Margie and I even found time to hit the mall and shop! Gymboree will have to restock after we did our damage! Who can pass up a great sale??????? The next couple of days we definitely full of fun and laughter...the kids were absolutely wonderful. They left last night about 8:00pm and I was missing them at 8:01pm! Hopefully I will see them soon as we may be taking a quick drive up there in the next couple of weeks.

We are currently still at treatment although we should be out of here within the next hour. Scotty is so tired that he is sleeping now...his dinner just arrived so I will wake him shortly so I can get some dinner in him before we head out. Things went great today...no problems at all.

Thank all so much for your support and love!
Kim

FridayTuesday, December 28, 2007 8:01 AM CST

Hi Everyone

I hope you all had a wonderful Christmas! We had a great Christmas...of course with Special Needs children they don't always go as planned which in our case is usually the norm. Scotty opened his Christmas presents when daddy got home from work on the Wed. the 26th!

Christmas morning he was up really early and climbed in bed with us...after having his own party which he had a great time at because he was cracking himself up for quite a while he finally fell back to sleep. Once he woke up we decided to give him a bath which we all know are marathon baths for Scotty and this one was no different. We finally coaxed him out 1.5 hours later ..got him dressed...sitting on couch to open gifts and guess what his eyes were closing. I didn't want him to open gifts tired so we let him sleep. We decided that we would also take him to the show that day because we weren't having to be at our friends until later that afternoon. Well we had to wake him to make it to the show on time....we saw Unchanted and he absolutely loved it(so did we). He sat there like a big boy the entire show not one time wanting us to leave...we had such a great time. The show was packed and there was a little boy a couple of sits in front of us who was also special needs making lots of noise so it was pretty funny between him and Scotty. Scotty very content as long as he had his popcorn..

Well by the time we got home we had to whip up a salad and head to our friends house for dinner. All of her family was there and all of our friends.. we ate a great meal and played games. We stopped by my sister's house on the way home and visited for about an hour and then arrived home around 10:30pm...Scotty was tired so I really didn't want to open gifts then either so that is why we opened on Wed.! Thank you everyone for the gifts that you sent and/or your beautiful Christmas cards! We love all our cards. We are so blessed to have such wonderful caring friends. I think I am going to leave our cards up all year!

Yesterday we were on the road early again for treatment...I figured it worked last week and we got out early so we'll try again this week....I don't normally have really good luck and I didn't yesterday. I think we arrived at the hospital around 8:20am...there was absolutely no traffic to deal with...no college students going to Stanford because holiday so we zipped right on through. My luck changed when we arrived at the Day Hospital...they were short a nurse...our nurse Michele. Who was out sick and the people were stacked up! We got in our room at our regular time 9:30 which was a good thing because Scotty was falling asleep sitting in the waiting room! We actually started the Elaprase about 11:30 (after 1 hour of premeds).
Scotty did great...although I think he only had about a 30 minute nap. Vickie our Genetics nurse stopped in for a visit and I remembered to ask her about the plans for doing some increasing in rate and/or dosage so she said she'd speak with Dr. Enns to find out exact plan. The ride going home wasn't bad..we got home about 8:15. My bestfriend Ann who has been staying with us had a wonderful hot meal all ready when we arrived not to mention a spotless clean house! That made a long day much better. Thank You Annie! We love you....
So that was our day....It's Friday morning and little man is still sleeping. He went to sleep around 11:30 last night but mommy went to sleep much earlier! Daddy had the night shift.

I hope you all have a Happy & safe New Years!

Tuesday, December 25, 2007

We want to wish all of our wonderful friends and family a very Merry Christmas. Thank you from the bottom of my heart for all of your prayers and wonderful support this year. I could not of done it without you..
It has been a stressful year to say the least but knowing you'd all be here helping me along was/is more than I could of ever hoped for.

THANK YOU ALL SO MUCH!
MAY YOU AND YOUR FAMILY HAVE YOUR MERRIEST CHRISTMAS EVER.
LOVE,
KIM, TOM & SCOTTY MAN

PS....I swear to you I updated my journal last Thursday during treatment! I can not believe the last update you were all reading was the 6th! I was a little behind but not that bad...well apparently so ...I don't know if I forgot to check that my last update actually took but apparently it didn't and I'm sorry.
I will tell you that Scotty's last couple of treatments have gone great.. 2 weeks ago we had a 3 hour commute due to an accident but that was about it. Last Thursday we made it to treatment 45 minutes early so we got to start early and we left during daylight! Home by 7:00. I'm really looking forward to moving on with this treatment. I believe it is time to bump Scotty's Elaprase dose back up to where it should be and also start increasing his rate. I think we are still looking at at least another 6 months of commuting to Stanford for treatment. That's if we start experimenting with dose/rate soon! I believe as long as he is on premeds it is a good time to be trying other rates. Other than that things are pretty quiet here. I am still not quite happy with Scotty's class. His Special Needs Program Mgr and Director are now both aware of this. The Program Mgr is suppose to be observing Scotty in class the day they return from vacation. I know his teacher is really trying and I truly appreciate his efforts but the fact is...this is not the Least Restrictive Enviroment (LRE) for Scotty. In fact I feel he is very very restricted in this class. I am also suppose to be meeting with the school psychologist who at my request observed Scotty during class. I know there has got to be someone else besides me seeing that the lack of stimulation for Scotty is making him a very bored and tired little boy. Grrrrrrrrrrrrrr

Thursday, December 6, 2007 7:23 PM CST

Hi Everyone

I would hope that I would be home to update but unfortunately it is almost 7:30 pm and we are still at the hospital and have another 45-60 minutes at least.
Scotty & I arrived early this morning (9:00am)in hopes of starting early and getting home at a decent time but someone else had other plans for us today.

When Michele was getting ready to prep Scotty's port for access she noticed a very small red spot on his skin right at access point. In the middle of the spot was a very tiny black dot. There was no redness around it nor was scotty in pain when it was touched but to be safe she called Scotty's Geneticist to come take a look. Well he wasn't at the hospital yet so that took 40 minutes then he felt not a good idea to access in case it was an infection. This meant IV access which took another hour to get set up...nurses could find a vein so we waited for the PIC line team and had to wait for numbing patch. Long story short we started the premeds at 12:15 and the Elaprase at 1:15. So it's been a very long day...Scotty has been a trooper..he took a nice long nap and has been watching movies while awake. Hopefully we'll make it home around 10:00pm.
Thank you so much for checking up on Scotty...we love and appreciate all your support.
Hugs,
Kim

Sunday, December 2, 2007 6:52 PM CST

Hi Everyone

Sorry so late to update .....no excuse except sheer laziness this weekend

Scotty's treatment went great Thursday...It was another long day because we got started late which means we also got home late but as long as Scotty is reaction free it is a great day.

I hope you all had a wonderful Thanksgiving.. Ours was awesome... We barbecued our own little turkey while we were staying over at the coast in our trailer..it was a beautiful day. It doesn't get any better than eating your Thanksgiving dinner while looking at the ocean at the same time. Friday we decided to take a ride over to San Francisco since it was only 25 miles away. I heard they were having a tree lighting at Giradelli Square and one at Union Square Friday evening around 6:00pm.

We got over there and had lunch at Bubba Gumps and did some walking around. San Francisco was unusually warm that day and pretty packed with people by the time we got up to Giradelli square it was really really packed and the only thing Scotty could see sitting in his stroller were a bunch of peoples behinds! Then it dawned on me how hard it was going to be trying to get out of there after the tree lighting so we listened to the carolers for a bit and headed out. We can go back another time within the next month to see the trees lit up. On Saturday a couple of my friends drove over and spent the day with us. Sherri drove home that night and Ann stayed with us and drove home with us on Sunday. It was a nice time away.
Have a wonderful week everyone.
Love and Much Hugs

Kim

Tuesday, November 20, 2007 11:29 PM CST

Hi Friends

Scotty's treatment went perfect today....he was such a happy boy all day just full of smiles for everyone. Not that he isn't normally but today he was just on some kick and cracking himself him all day. He is exhausted right now....as a matter of fact he is snoring away already. He didn't sleep on the way to treatment nor did he take a nap there so he was pretty tired. Today I got him up and we went out on the Day Hospital Patio so he could stretch a little. He really seemed to like it so we'll probably try and do that as much as possible. I think his favorite part of it was being able to see himself in the glass! Such a ham! MY CUTE HAM :)
We want to wish Scotty's nurse Michele GOOD LUCK..she is leaving tomorrow morning for Hawaii to compete in another Tri Athlon

We are leaving Thursday morning with our trailer over to the coast...enjoying the ocean and some much needed R&R.

I hope each and every one of you have a Happy Thanksgiving.. Remember to take the time to think about what you are truly grateful for. I know I have many things...definitely on the top of my list right after being married to the greatest daddy
is all of you..all of our wonderful friends that I would never of met if it wasn't for my beautiful son. It still amazes me that the majority of my closest friends ever are people I have met through MPS or Caringbridge. I don't know what I would do without all of you... THANK YOU FOR ALWAYS BEING THERE.

Hugs and Much Love,
Kim, Tom & Scotty

Saturday, November 17, 2007 12:08 AM CST

Hello Friends!

Sorry to be late again...I guess it's starting to be my norm.. Now that we are back to getting home later again after treatment I'm pretty much going straight to bed and playing catch up on Fridays.

The good news is Scotty did great on Thursday...he didn't sleep on the way to treatment so he napped for the first time in a while there. It was a good 2.5 hour nap. Once he woke up and ate his lunch I got him out of bed and into a chair for a couple of hours hoping this would help him not get so stiff and not being able to walk when we got home. We also put a box under his feet in the car to keep his legs/feet from dangling which I think may be some of the problems with his hips. I believe it all did help....when we arrived home he was able to walk by himself. We did notice him stopping by and leaning on the couch for a quick second. I think next week I'll get him moving some more and even stretching his legs while he's laying in bed.

Being that Thanksgiving is on Thursday ...next week we will be doing treatment on Tuesday. I had originally asked for Wednesday a month ago and we made our Thanksgiving plans around that day. We would take our trailer up to Half Moon Bay on Tuesday and drive to treatment Wednesday and stay at the coast through Sunday...but they have just informed me that Wednesday is a very very busy day and would I mind switching to Tuesday. I originally wasn't happy about it and thought about just canceling that week but the truth is I would rather Scotty not be there on a busy crazy day so we'll do Tuesday and then we are just going to drive up to Half Moon Bay on Thursday morning. I think last year we did the same and there was no traffic so it worked out well. So we'll be enjoying Thanksgiving watching and listening to the ocean which we love so much! It's the best time of the year over there so it should be beautiful. We have friends coming to visit on Friday or Saturday which should be a lot of fun.

I forgot to mention Scotty's IEP meeting went well last week. We discussed what I felt are Scotty's issues in class and they were very receptive. We are going to try some rearranging of his day and see how things go from there.

I hope you all have a great weekend...I will be back on Tuesday or Wednesday with an update on Scotty's treatment and to wish all of our wonderful friends a very Happy Thanksgiving.
Hugs,
Kim

Saturday, November 10, 2007 6:14 PM CST

Hi Everyone

I hope you all are having a nice weekend.

Scotty's treatment went great last Thursday...no problems at all until we arrived home. For the last three weeks when we arrive home after treatment Scotty is having a hard time standing up right away. Poor guy has been sitting in carseat or bed all day so it's taking toll on
his hips. He has never had hip problems before but I know this is what's happening. His hasn't napped these last 3 weeks during treatment so he's not getting that 3 hour break of laying down and stretching out. The hospital beds are new but Scotty just can't get comfortable in it. I sent an email to his Doctor Friday to let him know what is going on...Scotty needs to be able to move around or he needs a big comfy chair to sit in. Hopefully they will figure something out soon!

Yesterday Scotty had a Dentist appointment for a cleaning. We are now trying to do this every 3 or 4 months so there is not as much to clean and maybe Scotty will get use to it. Of course our wonderful friend Sherri came again and helped out holding Scotty during the cleaning. His teeth weren't too bad but he had 4 very loose teeth up top so Tom said to go ahead and pull them while he was in there. Scotty was too upset from being held during the cleaning to notice any pain from pulling the teeth. The Dentist said they were just hanging there so it couldn't of been too painful. Once they were done Scotty was as happy as could be. He really didn't bleed much once we left and never showed any signs of being in pain at all that night. Just our happy little Scotty man.

Well we have Scotty's IEP now this Tuesday..it was suppose to be last Friday but something came up with the Program Mgr so we rescheduled. I observed Scotty in his class (without him seeing me) last Wed. morning to find out why he is aggressive at show yet at home not one bit of aggression......well now I know and they will know on Tuesday. Scotty is so bored from non stimulation that he becomes very tired and then very aggressive when they want him to do something. I just can't believe they feel this is good for Scotty. I really think they expect him to sit in his chair all day also...and not be vocal! His only form of communication and he can't do it freely without being shhhh...not the right place and this is a Severely Handicapped classroom...I am not kidding. I will update next week after meeting.

I hope you all enjoy your weekend.
Hugs,
Kim

Friday, November 2, 2007 5:18 AM CDT

MY MOTTO TODAY WAS...IF IT COULD GO WRONG...IT DID GO WRONG!

My day started well..I had most of my backpack packed for treatment day so it left me enough time to get in my 5:15 morning walk...Scotty got up happy and we were on the road by 6:50...it was still dark and when I got out to the country highway that I'm on for approx 30 miles before hitting the big highways I saw it! FOG FOG FOG!
It was pretty bad..but everyone seemed to drive slow and cautious. I thought it would clear up when I got to the Bay Area and it did for just a bit then back to being foggy. Scotty was back asleep 10 minutes after we left home and stayed asleep until I started waking him up about 10 minutes before getting to the hospital which was around 9:15.

It was nice and quiet at the Day Hospital, we got in our room pretty quick. Scotty was a little fiesty from getting all that rest so when they went to access him there was three of us holding him. The nurse tried twice to access and she just couldn't get it in which was the first time this had ever happened. She decided to let another nurse try and she was able to get it on first poke. Scotty was a bit irritated but got over it quickly once he started watching Barney. We were waiting a while for the Elaprase...then I heard we were waiting for new orders to be faxed over. In the meantime I am working on my laptop and getting very frustrated because I get get the wireless to hook up to hospitals...I have no idea why..I must of messed with it 2 hours straight..no luck.. I go to take a picture of my little Scotty man and my camera said my card was locked! what the heck does that mean? so I could not use my camera..I'm still not sure why.. so as you can see my day was not going well.
We finally started around 12:15..Scotty got his premeds 12 hours before and 1 hour (via IV) before infusion. He was also given some IV Benadryl. During this whole time I'm getting some text messages from friends to see how it's going..my cousin Sherri sent a couple to ask if we had started yet? which is a little odd for her..I mean she checks but never wants to know if we've started??? Well much to my surprise here she comes walking into the room! She was getting off work early and decided to come and surprise us. Which she did and it couldn't of happened at a better time! Now I have to tell you Sherri lives by me so it wasn't a quick drive..
THANK YOU SHERRI!
Scotty is watching his movies..I knew he wouldn't nap because he slept the whole drive so he was happy...he ate some of his lunch and then I noticed him rubbing his eyes and nose...then he would sneeze..of course his eyes would then become red. The nurse saw this and said just to be safe I'm stopping the infusion and calling the Genetics Dr. on call. We wait for the Doctor to come over..and she (Sara) looks Scotty over and like us feels he's fine ..I didn't think this was a reaction to the Elaprase. possibly the Benadryl because Scotty has turned red in the past when they were using it...they agreed to give him some more meds (not a steroid) wait 30 more minutes start back up but at slower rate than we were at...so we went from 20 back down to 12. For a couple of more hours Sherri and I continued to visit..Scotty watched his movies and then he starts rubbing, sneezing and his eyes then turn red again...we stop the elaprase again...they call for Dr. and I think she had left or was doing something else but they said Vicki, the Genetics nurse was now coming.. Vicky saw Scotty saw some of the redness asked me what I thought which I still was not convinced this was a reaction to Elaprase..so we go over everything again and she said let me call the Dr. By now it's getting to be 6:00 and we had only used a little over 1/2 of the Elaprase at this point I am convinced that we are finishing it all! Vicki spoke with Dr. on the phone the plan was to go ahead and restart with some more meds but go back down to 12ml..if we weren't done with it at 9:00 we had to stop regardless because they wanted Scotty observed for 1 hour before we left and Day Hospital closes at 10:00...oh and if this happens again we're done for the day...no problem I agree. Now the meds hadn't arrive yet..waiting for pharmacy upstairs who was taking forever so Vicki ok's nurse to restart without them. She stayed in the room with us for a bit just chatting and we look at Scotty and he starts again rubbing his eyes and turning red within minutes of starting back up. So Vicki said that's it ..we're done turn it off. I have no idea what was causing this? Now this has to be a reaction.. and a new kind while he's taking PREMEDS!
I told Sherri it was going to be a while for us and for her to get on the road since it was a drive she wasn't use to and that was around 8:00. After Scotty got a dose of Claritin and Zantac we had to hang around for a while so we did not leave that hospital until 10:00. We got home at 11:30.
I'm just not sure what they are going to want to do for future treatments...I'm not gong to be pumping him with more premeds. We saw first hand what happened to Scotty when he got too many meds in him 6 weeks ago and it was scary. This will have to take some serious thinking. I'll keep you posted.

Scotty had a great time trick or treating...we walk our big block and hit about 10-15 of our neighbors. Scotty doesn't eat or care about candy.. I can honestly say I don't think he had one piece! We weren't out too long because we had to get back to our house to give out candy..as you can see by slide show we really decorate so we hate not to be here for the trick or treaters.

Thank You very much for checking up on Scotty...we hope you all have a great weekend!
Hugs,
Kim

Saturday, October 27, 2007 8:01 PM CDT

Hi Everyone

I hope you all are enjoying your weekend

Well I arrived home from Chapel Hill, NC last Saturday night..I had a quick layover at the Santa Ana Airport in So. CA on my way home..it was the very next morning that the fires had started right there in that area.

My brother and his family live in San Diego and they had a mandatory evacuation...fortunately for them they were allowed back to their home a couple of days later..Please keep the families in your prayers who weren't so lucky.

Scotty was very happy to see his mommy...and I was very happy to see him and daddy. I missed them both very much.
My little friend Nathan was discharged late Friday afternoon and they drove home that night. Nathan has been doing well since being home..although he did have a couple of bad days. Please continue to pray for Nathan and Rebecca.

I wanted to say Thank You to my friend Trish who picked me up from my hotel and took me to the Airport Sunday morning. I hadn't seen Trish in a couple of years..she use to work at UNC with Dr. Muenzer... she picked me up early so we would have some time to stop for coffee and visit before heading to the airport...it was so great to see her.
THANK YOU TRISH!

Scotty and I(daddy had to work)got to spend all day Sunday together at home just relaxing and watching his movies. This also included a lot of mommy hugs and kisses! I'm sure he was getting a little tired of it.

I spent the next few days trying to get caught up and then it was Thursday already! Treatment day. Everything went great..no problems at all. Scotty got his usual nap time in. I think we arrived home about 8:00 pm. Scotty went back to school Friday and we really haven't been doing too much since. I am trying to get motivated to start reviewing and preparing for some upcoming meetins. I have one with the Regional Center, we have an IEP meeting in about a week (we had to reschedule because I was sick) and I need to write a letter appealing CCS' decision that Scotty does not need OT/PT...now this is funny because all of the MPS Experts say he does and I have their letters...so another fight. I guess it's just been a normal week! lol sad that my normal weeks are fighting for services for Scotty.

I hope you all enjoy the rest of your weekend.
Take Care and Thank You for checking in on Scotty.

Friday, October 19, 2007 6:57 PM CDT

Hi Everyone....

I hope you all had a great week!
Scotty's treatment went great yesterday...on very short
notice I went out of town so daddy took little Scotty man to his treatment. He said he was a very good boy and everything went perfect.

They started premeds around 11:00 and the Elaprase around 12:00. They arrived home last night around 8:00.

On Monday I got a call from my very good friend Rebecca in NC that her son Nathan (www.caringbridge.org/visit/nathanbivens) who also has Hunters was not doing well...they could not calm him down. This had been going on for a while and Rebecca just couldn't watch Nathan continue this behavior...mentally and physically. So after speaking with the Dr. at UNC they decided they would have him admitted and try to work on his meds. When Rebecca was telling me this on the phone I could just hear her total exhaustion and I just felt helpless as I had in the past because of the distance between us. This time I could tell it was different and wanted to be with Rebecca to support her and help her so I checked out the flights and found that I could get a pretty cheap round trip flight. I arrived Tuesday night and was hoping to surprise Rebecca but her mother had already told her i was coming. I had spoken with Rebecca's mom the night before because I wasn't able to reach Rebecca and I knew she would be in contact with her. She told her because she thought Rebecca may end of leaving early against the Doctors wishes. It was great to see Rebecca and Nathan..we have been such great friends for so long but had never met in person. It was like we had been friends all our lives........and Nathan..I can't even put into words how it felt to finally meet and be with him in person...he is such a special little boy. We had a great time together despite the fact it was in the hospital. Nathan has the best mommy ever!!!!! I literally do not know how she does it..

They were discharged from the hospital today which happens to be NATHAN'S 12TH BIRTHDAY with some new meds and different doses.. I just pray when they get home that this will be the answer to what Nathan has been going on with Nathan. I waved goodbye to all of them about three hours ago and I miss him and Rebecca so much already....I hope to hear from them soon that they made it home with no problems. I miss them all :(

HAPPY BIRTHDAY NATE NATE...AUNT KIM MISSES YOU AND LOVES YOU VERY VERY MUCH!

My flight back homes leaves tomorrow at 11:45am. I can't wait to get home and see my little Scotty man (and daddy). I missed them both a bunch.

I hope you all have a wonderfful weekend and thank you from the bottom of my heart for checking up on Scotty.
Hugs and Much Love,
Kim

Saturday, October 13, 2007 11:33 AM CDT

Hi Everyone

I'm very sorry that I am just getting here to update..I know a lot of you check up after Scotty's infusions on Thursday and because of his recent problems I should of updated sooner so you wouldn't worry..I have been under the weather after getting home that night...so much so that I cancelled our first IEP meeting Friday morning with his new teacher/new school. Which most of you know is so unlike me. I'm feeling a little better and have much to update here including tons of new pictures! I will try to do that later today or tonight.

Thursday was a very very long day...our normal 2-2.5 hour commute turned into 4 hours because of an accident on the freeway (read this morning that it wasn't an accident but a dead body on the freeway! (Only in CA). Because of our delay we did not have our normal private room we were in a double room which was VERY VERY small or maybe it just seemed that way after a 4 hour commute. The Day Hospital had people stacked up every where. I think they were short a couple of nurses...it was a crazy day for every one.

The good news is Scotty had no problems! well besides getting a little antsy to get out of bed towards the end...which was 8:00PM. Poor little guy had been sitting/laying all day.

The best part of our day was when we got an unexpected visit from Aunt Kris & Uncle Bruce! Kris had an appointment at Stanford the next morning so her and Bruce decided to drive over early instead of dealing with the traffic...(because we all know anything can happen..including dead bodies on the freeway!) Aunt Kris has the biggest heart in the world...she just makes everyone feel so special. Always concerned about everyone else even though she has been recently diagnosed with Cancer. When she walks in to a room she puts a smile on everyones face :) Thank you Aunt Kris and Uncle Bruce for your visit...I really needed it! Could you tell???

I will have to stop here and try to return later on ...
Thank you everyone for stopping by..
WE LOVE YOU ALL!
Kim

Saturday, October 13, 2007 11:33 AM CDT

Thursday, October 4, 2007 7:40 PM CDT

Hi Everyone

To all of you who sent Scotty birthday wishes,
birthday cards and gifts....THANK YOU!
He loved them all!

We had such a great time spending Scotty's birthday weekend with our friends! We went to this beautiful park on Sunday...it was all just perfect...couldn't of asked for a better weekend! Thank You Margie, Shawn, Katherine & Myranda...we love you guys!

This week has been pretty quiet...Scotty has been doing great..well there was that little incident of him biting his teacher on the arm on Tuesday not sure what was up with that except he was frustrated and it (arm) was in the wrong place at the wrong time. We have an IEP meeting next Friday morning so this is something I will obviously be discussing. I will update you on that next week. In the mean time pray for a "bite free" week!

Last night I attend a CAC (Community Advisory Committee) meeting for Scotty's school district...in attendance was the SELPA Director, a Program Mgr Supv..which happened to be her first day and she is actually Scotty's Program Mgr's Supv so it was nice to meet her. Previously the SELPA Director was in this position before the job advancement, the CAC President and myself. That was it. Of all the Special Needs parents out there who could be attending these meetings/trainings and voicing their feelings regarding the classes for our children..none attend! and our school district is pretty good size. Amazing..so we need to work on getting these families to attend these meetings. Power behind numbers!

Now lets talk about today's treatment and let me remind you that Scotty HAS NOT been sick in a very long time and wasn't this morning........ but I knew it had to happen and it did today for the first time since he started treatment a year ago... we drove to treatment and the nurse was doing all Scotty's vitals which obviously included listening to his lungs.. she said she heard a little rattle so she wanted to call his Genetics Doctor and let them know...The Genetics Intern Dr. came in and heard it also and said they did not feel good about going ahead with Scotty's treatment because of his reaction history and him now testing positive for antibodies. She said they would do a breathing treatment but if he showed impovement after treatment or sounded worse then this was not a good thing????? and they would definitely not continue with treatment. I said then why in the world are we doing the breathing treatment??? She said well in case he remains the same....for some reason this means he would be less likely to have a reaction. In comes Respiratory and she does treatment listens to him afterwards and says oh good he sounds better...I said NO he can't he has to sound the same! Dr. comes back in and says so he sounds better but we also want to do some chest xrays just to be safe there is no foreign object in his lungs or the start of pneumonia......off we go to radiology...xrays done back to room wait...wait...wait.. Dr. comes back in and says xrays look nice and clear BUT they still don't want to do treatment just to be safe. I said alright but I'd like to speak to Dr. Enns first and explained it was nothing against her and her ability as a Doctor...she totally understood. By the way for those of you who are wondering his Elaprase had not been mixed yet although the first nurse had told me it had but I guess she was mistaken. Dr. Enns couldn't make it in but his nurse Vicki came in and I think she was a little surprised that Scotty looked as healthy as ever. I just tried to explain my side that obviously in no way do I want to put Scotty in jeopardy but he looks pretty healthy and had a couple of coughs while the nurse happened to be in the room...if she had missed being in the room during those coughs it would of been treatment as usual. I think it was about 1:30 then and we did the time calculation if we were to start which would put us getting home no earlier than 10:00 tonight. I also explained that we are coming up on Winter it's pretty normal for these kids to have a rattle but what happens again if we aren't lucky enough to hear it before we head out for our 2.5 hour drive for treatment??? I leave home thinking Scotty is nice and healthy and they hear a crackle???? grrrrrrrr I think I need a Stethiscope to listen to him at home! Seriously
When Vicki was on the phone with the Dr. probably pleading my case I just motioned for her that we'll skip today..after thinking about it I was not up to getting home that late plus driving in the dark. More importantly I thought I would support them in their decision of not wanting to do treatment. There was not a person in that Day Hospital who felt we should do treatment and I wouldn't of been very popular if we did! It was the best thing to do... I know everyone is just looking out for Scotty's best interest.
Scotty did look a little pale on the drive home so maybe he was "spared" a reaction today.

Sunday we are going to attend BioMarin Pharmaceutical's Walk/Run in the Bay Area for MPS so that should be fun and we'll see some of our friends which is the best part. I know Scotty's Genetic's nurse Vicki said she'll be there so we'll have fun.

I hope everything is well with all of you....I hope to visit everyone's caringbridge site this weekend to check up on every one.
Have a wonderful weekend.

Hugs & Much Love,
Kim

Saturday, September 29, 2007 12:54 AM CDT

HAPPY 1OTH BIRTHDAY LITTLE SCOTTY MAN!
WE LOVE YOU VERY VERY VERY MUCH..
MOMMY & DADDY

Friday, Sept 28th

Hi Everyone

Sorry took me so long to update! We got home late last night and then my sister-in-law came by for a visit so I
didn't have a chance to get to update. My sister-in-law
Wendy who lives in San Diego and whom we haven't seen since Christmas was/is in town for a business retreat....
she normally stays with us but she had to meet their guest speaker at the Conference room this morning at 7:30am so she just thought it would be best to stay right there at the hotel....we had a great visit. She brought Scotty a San Diego hat for his Birthday and a Toy Story Bday card that talked when he opened it...boy that was funny to watch him try to figure out where that was coming from! He kept shaking it like there was a dvd that should be falling out! So cute
THANK YOU AUNT WENDY, UNCLE ROD, MICHELLE, SARAH & ALLY!

Everything went great yesterday (& slow)... Scotty did well and slept about 3.5-4 hours! We decided we would continue doing the premeds 12 hours before but the 1 hour before we did by IV today and will continue doing so for a while. Hopefully this may be a little more effective in helping with the reactions of course it's another hour onto our day but if it helps in keeping the reactions away and Scotty safe than that is fine. We did get the lab work back from a couple of weeks ago and it did show that Scotty is testing postive for antibodies! In talking with all his Doctors including the Doctor who did the ERT trials this is fairly normal in at least 50f the boys in the trials. It does not make the treatment less effective and eventually he will test neg. for the antibodies again. There were a few antibodies that he tested negative for which was what they wanted so that is a good thing. Leave it to Scotty to keep us all on our toes!
His nurses came in and sang happy birthday to him..he was so shy that he covered his face (with Barney). They all signed a card for him, had a yummy cake and a Mickey Bday balloon.
THANK YOU ALL! WE LOVE YOU GUYS!

I met the new Day Hospital nurse...her name is Julie. Julie came from Boston and worked in a hospital there that a couple of our friends Brandon & Justin were/are getting their Elaprase treatments. Julie was their nurse and knows them very well...it was so nice to talk to her about them. She is so sweet and made sure to tell me to tell them Hi and how much she misses working with them. It is such a small world isn't it!

I let Scotty sleep in this morning until approx. 10:00 am because I knew he went to bed late and got up very early with daddy. I took him to school around 11:00. They were going to have a little birthday party for him today but not knowing for sure what time we'd be there they decided to do it Monday.

We are heading out of town tomorrow to spend Scotty's birthday with our wonderful friends up in Paradise who have two MPS III daughters. We have a great time with them and they love Scotty so much...I can't think of a better way to celebrate Scotty's special day than just hanging out with them.... we are going to have so much fun.

I can't believe my little boy is going to be 10. It just seems like yesterday I was walking into the hospital to have him. Wow these ten years went quick but I wouldn't trade them for all the money in the world. Scotty is our Gift..the most precious gift in the world.
Scotty is our Sunshine...our Life ....our Everything. He is such a special little boy with his unconditional love.. I know he is nonverbal but he teaches us so much everyday.. he teaches us
UNCONDITIONAL LOVE.
HAPPY BIRTHDAY TO OUR LITTLE MAN!
MOMMY & DADDY LOVE YOU SOOOOO VERY MUCH!

Have a great weekend!
Love,
Tom,Kim & Scotty

Friday, September 28, 2007 12:54 AM CDT

Hi Everyone

Sorry took me so long to update! We got home late last night and then my sister-in-law came by for a visit so I
didn't have a chance to get to update. My sister-in-law
Wendy who lives in San Diego and whom we haven't seen since Christmas was/is in town for a business retreat....
she normally stays with us but she had to meet their guest speaker at the Conference room this morning at 7:30am so she just thought it would be best to stay right there at the hotel....we had a great visit. She brought Scotty a San Diego hat for his Birthday and a Toy Story Bday card that talked when he opened it...boy that was funny to watch him try to figure out where that was coming from! He kept shaking it like there was a dvd that should be falling out! So cute
THANK YOU AUNT WENDY, UNCLE ROD, MICHELLE, SARAH & ALLY!

I just want to tell you all that yesterday went great (and SLOW). Scotty did well and slept about 3.5-4 hours! His nurses came in and sang happy birthday to him..he was so shy that he covered his face (with Barney). They all signed a card for him, had a yummy cake and a Mickey Bday balloon.
I will post some pictures this evening when I can get back here to finish this journal entry. I have to get Scotty to school ...I let him sleep in this morning since he was so tired last night. I think he got up this morning about 3:30 with daddy and I'm not sure how long they were awake so I just decided to let him sleep as long as he needed to. I will be back to finish up this journal with our plans for the weekend.
Hugs,
Kim

Thursday, September 20, 2007 7:47 PM CDT

Hi Everyone

I wanted to let you know that all of Scotty's appointments went great yesterday! Our first appointment was at 9:30am and the last was 3:30pm. It was a non-stop day...we originally had 5 appointments but when we arrived for our 2:00 Ortho appointment they informed me that they were running at least 40 minutes behind and that wasn't going to work since we our next appt was 2:30. Normally I wouldn't of scheduled them so close but we had just seen an Ortho Dr. in Seattle last month. So if we had to miss one appointment that day I'm glad it was this one.

Neuro & Pulmonology appointments- we just discussed how Scotty was doing which is great and what test we should start working on getting scheduled. All of Scotty's last tests were done in 2/2005.

Genetics appointment- we discussed all the recommendations for Scotty's next ERT treatment which would be SLOW SLOW SLOW. The 1 hour before premeds we will now do by IV. We are also going to go back down to 12mg of Elaprase rather than 16mg. This will only be for a short time hopefully. I don't think they were real happy at first with me making the decision to skip treatment today but after talking to them I think they saw my point from a "mom's perspective". Missing one treatment is not going to hurt him...where as this break he needs will be very benefical. He was so exhausted from these last 2 weeks he slept until 1:30pm on Tuesday. I had to keep checking up on him and making sure he didn't have a fever or any breathing issues and he wasn't ...I guess just plain tired.

I'm excited to say that the ECHO & EGK tests that were done showed no difference from last years tests! This is a big deal being that Scotty is 10 years old!
Thank you for your prayers they worked!

Scotty went to school today for the first time this week. He was there about a hour and his teacher called and said he had a blow out! I guess the prune juice daddy gave him last night finally kicked in. I had to run some clothes to the school for him. I had extra clothes in his bag but they were shorts and guess what today was?...a little chilly so he needed some warmer clothes. He was fine the rest of the day.

THANK YOU ANNIE for going with us yesterday to his appointments! You were a great help as always..I don't know what I'd do without you... We love you! (and Scotty really loves that vneck shirt of yours!..you know he's quick!)

Thank you everyone for all your love and support. Scotty is truly blessed to have so many wonderful, caring friends.

Hope you all have a great weekend.
Hugs,
Kim & Scotty

Tuesday, September 18, 2007 5:29 PM CDT

**UPDATE
I just wanted to let you know that Scotty will be seeing all his Specialty Doctors on Wednesday but we have decided to give Scotty a break and skip treatment on Thursday.
Hugs,
Kim

Friday, Sept. 14

Hi Everyone

I hope you all are doing well and getting ready to enjoy your weekend.

Scotty's treatment went well yesterday. It was decided that we would go back to the slower infusion rate that Scotty's little body seems to love so much which really wasn't a problem with me. We'd start at 4 ml and ramp up every 30 minutes by 4 (4,8,12,16,20,24 to 40). It was also decided that we would not add any new premeds to the ones Scotty was already taking.
I was so confident that Scotty's treatment would go well that I didn't order him dinner when we checked in just lunch. (dinners served at 5:15). The nurse brought in the Scotty's new orders and it was there that I realized we were going back down to a max rate of 24 ml/per hour. That meant an extra 2 hours.....so I had to go order his dinner! We didn't start until 11:15 Scotty was awake when lunch was served and he ate everything. He fell asleep around 1:00 and stayed asleep for a couple of hours. In the mean time I had quite a few Doctors/Nurses in and out of his room checking up on him. Which was great because it gave me time to talk and get some questions answered. Scotty woke up and watched some movies ....ate all of his dinner and then we were done about 5:30...just needed to do the flush and hang out for the 30 minute observation time. Towards the end of the flush I noticed Scotty's face was getting red...I brought it to the nurses attention and she could see it also...They paged his Allergy Doctors and Genetics team who were in earlier to see what they wanted to do...well they all came back to see Scotty plus some new Doctors. I was getting a little worried they were going to say the "A" word (Admitted)and I knew they wanted to because it was starting to get late..but in the end they gave him some more meds and you could see the redness slowly disappearing. I assured them I was comfortable with driving Scotty home and if I felt he was in any danger I would not leave. Everyone including Shire Pharmaceutical are still brainstorming as to what may be causing these reactions. Which they really don't call reactions because he tested negative for antibodies a while back. They drew labs again this week to retest for the antibodies and a few other things. The other possibility is Scotty's immune system is so strong that it's fighting itself.

So we drove out of the parking lot at 10:00pm...arrived home at 11:20. I drove a little fast.
Scotty did fine on the drive home and was even asleep with in 30 minutes of getting here. I wish that was the same for me but of course not.

Next week is going to be another very busy week...I have a meeting on Tuesday with Scotty's Coordinator from the Regional Center to do his annual IPP. Then on Wednesday it is back to Stanford for his annual appointments with the Cardiologist, Neurologist, Orthopedist, Pulmonologist & Genetics. Wow...that will be a long day..I just need to make sure the portable DVD player is charged and Scotty will be just fine. We will stay the night there for his ERT the next morning. Scotty has been doing his ERT treatments a year this week so I am very interested in seeing results of the tests that will be done at these upcoming appointments. I pray that there will be some improvements or at the very least no signs of progression. I guess I am just looking for reassurance at this point that we are doing the right thing for Scotty.

Thank you all for stopping by and checking up on Scotty...he's as happy as ever which is what really counts the most.
Hugs,
Kim

Friday, September 14, 2007 5:29 PM CDT

Hi Everyone

I hope you all are doing well and getting ready to enjoy your weekend.

Scotty's treatment went well yesterday. It was decided that we would go back to the slower infusion rate that Scotty's little body seems to love so much which really wasn't a problem with me. We'd start at 4 ml and ramp up every 30 minutes by 4 (4,8,12,16,20,24 to 40). It was also decided that we would not add any new premeds to the ones Scotty was already taking.
I was so confident that Scotty's treatment would go well that I didn't order him dinner when we checked in just lunch. (dinners served at 5:15). The nurse brought in the Scotty's new orders and it was there that I realized we were going back down to a max rate of 24 ml/per hour. That meant an extra 2 hours.....so I had to go order his dinner! We didn't start until 11:15 Scotty was awake when lunch was served and he ate everything. He fell asleep around 1:00 and stayed asleep for a couple of hours. In the mean time I had quite a few Doctors/Nurses in and out of his room checking up on him. Which was great because it gave me time to talk and get some questions answered. Scotty woke up and watched some movies ....ate all of his dinner and then we were done about 5:30...just needed to do the flush and hang out for the 30 minute observation time. Towards the end of the flush I noticed Scotty's face was getting red...I brought it to the nurses attention and she could see it also...They paged his Allergy Doctors and Genetics team who were in earlier to see what they wanted to do...well they all came back to see Scotty plus some new Doctors. I was getting a little worried they were going to say the "A" word (Admitted)and I knew they wanted to because it was starting to get late..but in the end they gave him some more meds and you could see the redness slowly disappearing. I assured them I was comfortable with driving Scotty home and if I felt he was in any danger I would not leave. Everyone including Shire Pharmaceutical are still brainstorming as to what may be causing these reactions. Which they really don't call reactions because he tested negative for antibodies a while back. They drew labs again this week to retest for the antibodies and a few other things. The other possibility is Scotty's immune system is so strong that it's fighting itself.

So we drove out of the parking lot at 10:00pm...arrived home at 11:20. I drove a little fast.
Scotty did fine on the drive home and was even asleep with in 30 minutes of getting here. I wish that was the same for me but of course not.

Next week is going to be another very busy week...I have a meeting on Tuesday with Scotty's Coordinator from the Regional Center to do his annual IPP. Then on Wednesday it is back to Stanford for his annual appointments with the Cardiologist, Neurologist, Orthopedist, Pulmonologist & Genetics. Wow...that will be a long day..I just need to make sure the portable DVD player is charged and Scotty will be just fine. We will stay the night there for his ERT the next morning. Scotty has been doing his ERT treatments a year this week so I am very interested in seeing results of the tests that will be done at these upcoming appointments. I pray that there will be some improvements or at the very least no signs of progression. I guess I am just looking for reassurance at this point that we are doing the right thing for Scotty.

Thank you all for stopping by and checking up on Scotty...he's as happy as ever which is what really counts the most.
Hugs,
Kim

Sunday, September 9, 2007 3:00 PM CDT

We are home!
We arrived home last night around 6:00. Scotty is doing great, he hasn't had any problems since the reaction on Thursday. Do I think the redness on Scotty's face Friday that caused them to keep him an extra day was a delayed reaction...No I really don't think so. I think the redness was from one of the medications that they were giving him. I tried to explain this several times to many people but I understand they have to cover themselves also. I'm just happy to finally be home and I know Scotty is.
The plan for next treatment is to go back to our previous infusion rate and I'm sure to stay there a very long time. Scotty likes it slow! They want to add another steroid to his current premeds and I don't really agree with that plan right now. I think to be 100ure it was the rate increase that caused his first reaction while taking premeds that we shouldn't be adding any more to the list. I will discuss this with his Doctor this week. I will keep you all posted.
Thank You all so much for your prayers for Scotty. Your words of encouragement help so much.
Hugs & Much Love
Kim & Scotty

Friday, Sept 7, 2007
This morning the Doctors did their rounds and stopped by and visited us at that time they told me that they felt Scotty should be observed for 48 hours which meant another night. I told them that Scotty has had these reactions in the past and has been fine and we have all the meds at home if some thing were to happen so in the end we agreed to compromise and we'd stay until late Friday afternoon. About 1:00pm Scotty's face became very flushed and his tongue and lips swollen...I had noticed it earlier and believe it is due to all the meds he has been getting as this has happened in the past several times...but the Doctors on this floor did the full blown reaction response and of course when we were done I knew what they were going to say......Scotty needs to be observed another night...so here we are still at Stanford. Scotty has been doing fine other than the redness. He's getting a little restless so I think I'm going to take him for a stroll in a wagon to get some fresh air and change of scenery. If anything changes I will update later.
Hugs,
Kim & Scotty man

Thursday, Sept 6, 2007

Hi Everyone

I thought I would not jinx myself earlier by posting we were trying a new rate today BUT it wouldn't of mattered because the REACTION happened anyways.
First and most important..... SCOTTY IS FINE NOW

We thought it would be a good idea to change the rate now since he is taking the premeds. We started at 8ml and did the normal ramp up of 16, 24 and at this point was when the reaction happened. We usually start at 4...then 8, 12, 16, 20 ect to 40.
Now we know Scotty's probably a lifer at the slower rate (5 hour infusions). Scotty was sleeping on his stomach and we were trying to stretch out his arm to get a bp and the nurse went to walk out and I said oh somethings not right here and pulled out his other hand from underneath him and it was purple and I could see he was beginning to shake. His shaking and the purple lasted about 45 minutes. Two doses of epinephrine and benadryl along with breathing treatments although he never destated. Of course we had every Dr. and nurse in there...it was a little crazy.

We are admitted now and on the 3rd floor.... Scotty is doing great watching Mary Poppins and I think my nerves have finally settled down.
Our friend Marey and her daughter were in the hospital today and she remembered it was thursday so she stopped by the day hospital right after the reaction and then came back when we were admitted so it was nice to see them and occupy my mind some.

He's doing fine now but I noticed he does have the red circles around his eyes, I believe this is from the Benadryl as we have been using Claritin instead. Other than that he is fine. I will post again a little later when I know I will be awake....who sleeps in a hospital!

Thank you all for checking up on Scotty.
Hugs,
Kim

Friday, August 31, 2007 11:24 AM CDT

Hi Everyone

I hope you are all well and getting ready for your long weekend!

We are doing great. Yesterday was "treatment day" (as my friends refer to it now instead of Thursday) and everything went well. They did have to stick Scotty's port twice and we're still not sure why but the second poke worked. The second poke they used a 1 inch needle instead of the 3/4 that we have been using. The nurse said she felt the first stick was completely in and actually the second poke went in the same place she went in. I'm just glad that there wasn't anything wrong with the port that couldn't be resolved with a longer needle. Scotty was a little mad being poked twice but was quick to get over it. We just kept the Apple Jacks very handy.

Scotty has started school and is doing great. We are going to let him adjust for a couple of weeks and then we will have to have an IEP meeting to change some goals. I love his new classroom which has in it a full kitchen and restrooms. It's nice, big and very organized which is great for me since I have this small issue being OCD about organization. (I have a binder for everything!) I don't now if you remember at our last IEP the school district once again denied PT/OT for Scotty so I requested a new OT Assessment. It was completed by the Therapist that dropped Scotty back in 2003 and once again she only suggested consult only. I realized in reading the Education Laws that she did not use the proper tools when doing the Assessment so I wrote a letter to the District stating what was wrong with her Assessment and that I wanted another one done by an outside source at the school districts expense. We went back and forth for a while because they wanted to choose the outside Co. for the new assessment and I said No by law you can not tell me what Co. to use....so they finally agreed to pay for the Assessment and to let me choose who will do it. This is where we currently are at. I have an appointment on the 10th for Scotty's assessment so we are moving forward...thank goodness!
I finally had a victory on one of Scotty's State Services that I have been working on since June. After providing documentation to them on their OWN PROGRAM they agreed with me and are in the process of crediting Scotty over 600 back time hours. I can now check this one off my list...DONE!
I think that is about it for right now..... I just want to thank you all from the bottom of my heart for checking up on Scotty. We are so blessed to have such wonderful friends. Which reminds me....Thank you so much Aunt Kris for Scotty's special Barney DVD that you sent him. He loves it so much. We miss seeing your smiling face on Thursdays :)
Have a great weekend.
Hugs and Much Love,
Kim

Friday, August 24, 2007 1:40 PM CDT

I know I just updated on Wednesday but I wanted to just let you all know that Scotty's treatment went perfect yesterday. I think we started at 10:15am and Scotty fell asleep about an hour later and slept until approx. 3:00. He would of slept longer but I wanted to get him up so he'd sleep that night. He didn't sleep well the night before so I think he was playing catch up.
Scotty starts back to school next Wednesday. He will be attending a new school that is much closer to us. Since his new teacher was also his summer school teacher I think Scotty will adjust fine to his new surroundings. He had attended summer school at this school a couple of years ago so that will also help.
I hope you all have a wonderful weekend. Scotty & I will just be relaxing at home since we've been on the go this last month plus Tom is working nights. Tom said at the beginning of September he will switch to working 7 to 3:30 daily for 6 months instead of working 7 12hour days/nights every other week. This will be an adjustment but it will be so much better for Scotty to have daddy home so early every day and off every weekend.
Hugs,
Kim

Wed., Aug. 22, 2007
Hi Everyone

We are home from our wonderful trip to Camp Prime Time! This was the 13th Annual MPS Family Camp (at Camp Prime Time)and the largest yet. I believe there were 2 MPS I (Hurler)families, 8 MPS II (Hunter) families & 2 MPS III (Sanfilippo)families.
We had such a great time just relaxing and hanging out with all the other families. They had given us the option of participating in other activities i.e. a boat ride & horseback riding (which we did)but if you just wanted to hang out and relax that was fine also. There was a bell that rang when breakfast,lunch & dinner were ready which was always on time per the schedule we were given. One of the wonderful volunteers asked if Scotty wanted to ring the breakfast bell (which was really a switch lol) Saturday morning so he did.
All the kids and their siblings had so much fun just running around being kids. I loved meeting all the moms in person that I have known only online via the MPS forum and/or email.
Thank You Camp Prime Time for this wonderful camp! Your volunteers were awesome. Finally Thank You Ellen & Cam for organizing the MPS Camp. It was great to meet you both.
Tom, Scotty & I will definitely attend next year.

Scotty did great on the trip...the plane rides were approx 1 hr and 15 mins. and he was perfect. Maybe a little loud while watching his movie but it didn't seem to bother anyone. We flew into Portland and drove to Camp which was close to Yakima,WA. I think with all our stops it took approx 4-4.5 hours to get there. When we left we drove to Seattle and that was another 3.5 hour drive but the scenery was well worth it. Scotty had an appointment with Dr. Klane White who is a great Orthopedic Dr. at the Childrens Hospital there in Seattle. Dr. White is also a MPS father himself. We were also able to visit with Klane's wife Amy & daughter Susannah. Amy has been such a great help to me in providing me information regarding the Services available in CA. They had lived here before moving to Seattle. Many many hugs to you Amy & Susannah.
We left Seattle around 2:30 on Monday and drove to Portland which was approx 170 miles away. Our flight left out of Portland at 9:00 pm. Tom said during our trip we drove almost 700 miles! Scotty is a great rider...he got a little bored sometimes and you could hear him in the back seat unzipping pockets on my backpack to see what he could find. We arrived home early Tuesday morning (12:30am)and I have been trying to play catch up since. I am going to try and upload some photos now of the trip.
Thank you all so much for checking up on Scotty. Your friendship means the world to us.
Many Hugs,
Kim

Monday, August 13, 2007 10:09 AM CDT

Update: Thursday Aug. 16

Hi everybody

I thought I would do a quick update and let you know that Scotty's 1st treatment without me went perfect yesterday. Daddy did a great job!
Their appointment for ERT wasn't until 11:oo am but they were home by 8:00 pm. Which is about the time I actually started packing for our trip to Camp Prime Time. In my defense I have to say that I had errands to run during the day and tons of laundry...you can't pack until your laundry is all done (at least I can't).
Our flight to Portland today was great. Scotty did an awesome job of being so good. It was a very short flight (approx. 75 mins)and a small plane which could of been a good thing or a bad thing but it was good for us. We flew Alaska Airlines for the first time and I have to say they were great. Doing everything they could to make it easier for us. We had dinner with our friend Kris and her son Devon who also has Hunters(they will be attending camp also). It was great to see them. It was the first time I have seen Devon since he started treatment and boy you can sure see the changes in him already,he looks great. We will meet up with them in the morning and follow them to Camp which is about a 3 hour drive. I'm so excited about meeting everyone!
Scotty and dad have gone down to the spa here at the hotel. Who knows how long little Scottyman is going to want to sit in that nice hot water. It could be a long night for Tom.

I don't think we'll have internet access at camp so I will have to update when we get home.

Please say some extra prayers for our friend Jesse. Jesse has MPS IIIA and today he had his first seizure. He is home and doing fine now but this is still very scary.

Have a great weekend.
Hugs,
Kim

Hi Everyone

Sorry that is has taken me so long to update. I have so much to update that I don't know if I can get it all written now but will try to write as much as I can right now.

Lets see we were on vacation last week at the Coast. We went to Scotty's treatment from there and his treatment went get. I had already asked if we could come in a little earlier since we were so much closer so we went in at 8:30 started the infusion about 9:15. My cousin Sherri who was also vacationing with her husband and us at the coast went with Scotty & I to treatment. Tom & Sherri's husband Greg came over to the hospital about 3 hours later. My Aunt Kris also stopped by to see Scotty during his treatment after her radiation treatment. She was so sweet she brought Scotty a Oakland A's baseball hat and a photo album of pictures she had taken during her visits with Scotty. He loved both of them ...not to mention he is still carrying around the Barney DVDs that she gave him the week before! THANK YOU AUNT KRIS...YOU'RE THE BEST!

We came home from the Coast Friday (day after Scotty's infusion)..it was hard to leave! We had such a great time...there was quite a few of us there so we had a lot of fun. Scotty had a great time as always. Our friend Marey who visited us once before while we were camping came over again and this time brought Aunt Kris with her. They were able to stay and visit about 1.5 hrs then had to head back to Stanford so Kris could get her radiation treatment. Thank you Marey & Kris for driving over..it was fun!

We arrived home Friday afternoon and unloaded the trailer. Tom had decided he would clean it on Saturday while Scotty & I went to the MPS family meeting but Sat. morning we decided he'd go to the meeting with us so it was back in the car back over to the Bay Area where we just came home from. I'm so happy we went because it was nice to see everyone and the meeting was very informative. Scotty's Shire Rep. Jeff had asked me a while back if I would be on a parent panel at the meeting to answer questions and I said I would and that went well. I was surprised when Scotty's Genetics nurse walked in because I didn't know she'd be attending and I hadn't seen her in the last month so it was nice to visit with her and catch up. Here are pictures of Scotty and Jeff and the other is Scotty and Vicki his wonderful Genetics nurse.

Scotty is in the middle of saying cheeseeeeeee in the picture with Vicki...
(wow I need to resize these..later)
I think we left the meeting around 4:30 or 5:00 and went across the street to shop for the first time at IKEA...ok that was a little overwhelming! lol That store is huge..we did a pretty quick stroll and then headed out since we had about 1.5 hour drive.
Sunday morning Scotty & I headed out around 9:30 to visit our good friends Margie, Shaun, Katherine (10) & Myranda (7). Katherine & Myranda have MPS III. I love visiting them....the girls are so beautiful and getting so big. It's so cute to see Scotty with them. There was also another MPS family there visiting from out of state. On Saturday we just hung out and visited. On Sunday we took a drive and ended up at a beautiful park. We sat there for quite a while..Scotty being Scotty seeked out the only bench in the whole park that was completely in the sun..he thought he was so funny (and he was). We went back to the house real quick before we headed home so I could change Scotty and he could eat something before we hit the road. The drive was about 2.5 hours..at least it was in the other direction this time so the change of scenery was nice. I hated saying good bye to everyone..they both are such wonderful families. The kids are so blessed to have such great parents who both are very involved in their daily care and who wouldn't have it any other way. Just like Scotty's daddy :)
Scotty & I arrived home tonight around 7:30. He was happy to see daddy. Tom worked today and will work tomorrow and then he's off again for a week. Because we are leaving for WA (Camp Prime Time) on Thursday, Scotty's treatment will be on Wednesday. Because I need to pack for our trip...Tom will be taking Scotty! This will be the first time I haven't gone to treatment although our plan when we started was Tom & I would alternate every week since he works every other week but that never happened because I coudn't not go but I know Tom will do just fine.

I will try to update one more time before we leave. Because it is very late right now I am not going to proofread this journal ....I will do it in the morning so sorry if you see some errors before I get them corrected...(we need spell check!)
Hugs,
Kim

Friday, August 3, 2007 1:49 AM CDT

Hello Everyone

I hope you all had a great week. Mine was ok..I got a few things accomplished that were on my list. Unfortunately I am still waiting for all Scotty's referrals to his Specialist Doctors at Stanford so I still haven't been able to make those appointments. Grrrrrrrr

I have been working on some other issues of Scotty's that I am making some progress which is a good thing. At Scotty's last IEP meeting at the end of the school year I had requested a new OT/PT Evaluation. The Therapist who did the eval was one in the same who dropped Scotty from Therapy back in 2003 which at the time I didn't dispute because 1. I didn't want some one working with him who didn't want to be there and 2. he was receiving PT through CCS (CA Children Services). Now CCS has put him on a consult only so I am going back to the school district. The Evaluation that was done did not follow the State's guidelines so I rejected the IEP & Evaluation and requested an IEE (Independent Educational Eval) be done by an outside source at the School District's expense. They did agree to pay for it but wanted to use someone they knew....hellooooooooo NO. Scotty has an appointment at the end of the month with another Therapist. I'm also working on getting Scotty more hours through In Home Supportive Services. He's entitled to them so I will get them for him. I am just totally amazed that I am quoting to these workers their own program guidelines! I think they just are not use to working with children in this program but still...if I can do research on their programs on line then they should know them.

Scotty's treatment went well today. There was a little incident with his IV line being clamped off and it wasn't noticed until 50 minutes into the infusion when there was a error with the line. Why it took 50 minutes we don't know but we had to start over again. Other than that the ERT itself was pretty uneventful. Scotty did have a day full of visitors which was great. Our friend Michelle who use to be one of Scotty's nurses but went to a different floor stopped by and chatted for a while. It was great to see her. She is doing a Ironman Marathon this weekend! GOOD LUCK MICHELLE! Our other visitor was Kris! Kris is a Caringbridge mom that I met this year through her son Danny's caringbridge website. Danny is doing great and is actually real close to being a first time daddy real soon. Unfortunately Kris was diagnosed with cancer a couple of months ago and decided on Stanford as her treatment Center. So today we made arrangements for her to come to Scotty's Day Hospital after her treatment. It was so great to meet her! I really felt like I've known her forever. She was so sweet to bring Scotty 3 new Barney DVDs. Scotty was sleeping when she arrived and stayed asleep for a bit but once he woke up and saw the dvds it was all over...barney barney barney. He is now asleep on the couch still holding one of the dvds! Scotty really warmed up to Kris right away. She even got the Scotty rub. He just loves to rub your arm. We will be seeing Kris again this Monday as we will be vacationing again over at the coast so another friend of ours (Marey) will be driving Kris over and we will all get to visit together. I'm really looking forward to it. Here is a picture of Scotty & Kris.

As soon as we arrived home tonight I had to begin packing up our trailer because we are heading right back towards the hospital to our favorite spot...Half Moon Bay. We will be staying there from Friday to Friday. Our friends are also going so we will be having a lot of fun. We have to get home Friday so we can attend a MPS Family meeting on Saturday. Then we will be flying out on the following Thursday to WA to attend Camp Prime Time!!!! (treatment will be on Wednesday that week) I can't wait to see everyone there. It's going to be so much fun. My pets are going to feel so rejected with us being gone but we have some wonderful friends that stay at our house to keep them company.
Well I better get going I hear Tom and Scotty snoring on the couch. We still have packing to do...
Hugs to all of you. Thank you all so much for being a part of our lives.
Love,
Kim

Friday, July 27, 2007 2:43 PM CDT

Hi Friends

Sorry I am just getting a chance to update but it's been a little crazy around here.
Scotty's treatment went great yesterday! The bonus plan was we got a visit from our friend Michelle so that was really nice. I would of bet money that Scotty would of slept all day because the night before he did not go to sleep until 3:00 am....I would of lost the bet he only sleep about 20 minutes and it wasn't a real deep sleep.

After we arrived home Scotty fell asleep around 10:30 pm and slept all night. Thank Goodness. It wasn't that easy for me because I was worrying about a dentist appointment Scotty had at 8:00 am this morning. Scotty has had this huge amount of plaque build up on his bottom teeth and it needed to come off. I was unable to coordinate dental work during Scotty's last sedation and I surely didn't want to have him sedated again for this plaque so my very good friend Sherri who has worked in the same dental office for over 20 years talked to one of their pediatric Dentists about Scotty and he told her he would be willing to try and remove this plaque without any sedation. We had an initial visit with him about 2 weeks ago and we really liked him, he was great with Scotty. We discussed all of our issues/Scotty's issues and he said lets see what we can get done. If Scotty is too traumatized during the treament he'd stop. I knew I could not be in the room while they were doing this so Tom & Sherri said they would. It took about an hour then I heard Scotty chatting away like he does coming down the hallway. His face was pretty red and there was blood in his mouth but he was happy. They removed all the plaque and decided while they were in there to go ahead and do a cleaning. Scotty was not happy and they had to hold him the whole time which is not easy. His teeth are in great shape...no cavaties (that they could see without an xray) and they are still very nice and white. They said his gums are going to be pretty sore so I gave him some tylenol when we arrived home. Tom said besides the big chunks of plaque they were able to get off there was some little slivers of plaque that they had to remove from his gums so he's going to be sore for a little while. I called Sherri this afternoon to Thank her again for her help with Scotty and she told me that after she walked us out she went back to Thank Dr. El Farro who was now in his office. Sherri said he was on the verge of tears and said "Scotty just touched my heart". He was so happy he was able to get everything done. Sherri also told me that Dr. El Farro was trying to calm Scotty while he was working on him by singing the Barney theme song! She said they all were singing it. That's a great Pediatric Doctor!
THANK YOU DR. EL FARRO, SHERRI AND DADDY!

I have more to write but Scotty is waking up..hopefully I can finish up later. Check back!
Kim

Friday, July 20, 2007 9:20 AM CDT

Hi Friends

Our little Scottyman had another successful treatment yesterday. As much as I hate giving him premeds it definitely out weighs watching him have one of those terrible reactions. It's not a lot of medication and I'm sure like before we will eventually ween him off of them.

Scotty's infusion started around 10:30 am and I think he was asleep by 12:00. Actually he fell asleep around 10:00 but I woke him back up (thank you Barney)so he'd be awake when they accessed his port. Now I think my (actually "our" because Tom was with me) mistake was letting him sleep as long as we did! Scotty was up early the morning before at 3:30 and didn't fall back asleep until 5:30 so I knew he'd be tired and he was. We had to wake him up when the infusion was done around 3:45. We still had the 30 minute observation so I thought that was enough time for him to wake up. He was pretty quiet on our drive home which was 2 hours but he must of got his second wind when we got home HOLY SMOKES he was one wired for sound little boy! Not only did he stay awake until 4:00 am he was wired the whole time! I know I fell asleep at 12:30 and he was still going strong. Tom was the lucky one who stayed up with him all night! It will be very interesting to see how late he sleeps this morning.

Scotty's nurse yesterday was one of our very favorites...Michelle. Michelle is the one who is from South Africa that I have wrote about in the past. She had told me once before that one of the reasons she accepted the job at the Day Hospital was "Scotty" whom she met during her interview. She is just one of the happiest, loving people that I have ever met. She just loved and adored Scotty as I am sure she did all the kids she works with. She has this incredible life of exercising (she has swam the English Channel!). She is currently training for a double Ironman Triathlon. I just loved hearing her stories while we were there. Well towards the end of the day she tells me that she will be leaving the Day Hospital to work in the Oncology clinic....
I was so bummed. She said we were a very special family and she would come visit us on Thursdays and we could keep in touch via email. When we left I think Michelle was at lunch so I didn't get to say goodbye which bothered me the whole drive home. I couldn't stand it so when we arrived home I had to call back to the Day Hospital and talk to her...fortunately she was still there and we had a nice chat. She promised to stay in touch.

Michelle is just another example of the wonderful people who have come in to our lives during this journey.
Hunter Syndrome is a TERRIBLE TERRIBLE disease...but it has brought us the friendship, love & support of all of you for which we are very Thankful.

Have a great weekend
Love, Kim & Scotty

Friday, July 20, 2007 9:20 AM CDT

Hi Friends

Our little Scottyman had another successful treatment yesterday. As much as I hate giving him premeds it definitely out weighs watching him have one of those terrible reactions. It's not a lot of medication and I'm sure like before we will eventually ween him off of them.

Scotty's infusion started around 10:30 am and I think he was asleep by 12:00. Actually he fell asleep around 10:00 but I woke him back up (thank you Barney)so he'd be awake when they accessed his port. Now I think my (actually "our" because Tom was with me) mistake was letting him sleep as long as we did! Scotty was up early the morning before at 3:30 and didn't fall back asleep until 5:30 so I knew he'd be tired and he was. We had to wake him up when the infusion was done around 3:45. We still had the 30 minute observation so I thought that was enough time for him to wake up. He was pretty quiet on our drive home which was 2+ hours but he must of got his second wind when we got home HOLY SMOKES he was one wired for sound little boy! Not only did he stay awake until 4:00 am he was wired the whole time! I know I fell asleep at 12:30 and he was still going strong. Tom was the lucky one who stayed up with him all night! It will be very interesting to see how late he sleeps this morning.

Scotty's nurse yesterday was one of our very favorites...Michelle. Michelle is the one who is from South Africa that I have wrote about in the past. She had told me once before that one of the reasons she accepted the job at the Day Hospital was "Scotty" whom she met during her interview. She is just one of the happiest, loving people that I have ever met. She just loved and adored Scotty as I am sure she did all the kids she works with. She has this incredible life of exercising (she has swam the English Channel!). She is currently training for a double Ironman Triathlon. I just loved hearing her stories while we were there. Well towards the end of the day she tells me that she will be leaving the Day Hospital to work in the Oncology clinic....
I was so bummed. She said we were a very special family and she would come visit us on Thursdays and we could keep in touch via email. When we left I think Michelle was at lunch so I didn't get to say goodbye which bothered me the whole drive home. I couldn't stand it so when we arrived home I had to call back to the Day Hospital and talk to her...fortunately she was still there and we had a nice chat. She promised to stay in touch.

Michelle is just another example of the wonderful people who have come in to our lives during this journey.
Hunter Syndrome is a TERRIBLE TERRIBLE disease...but it has brought us the friendship, love & support of all of you for which we are very Thankful.

Have a great weekend
Love, Kim & Scotty

Thursday, July 12, 2007 4:45 PM CDT

Hi
Just thought I'd update real quick while we are here for treatment. Really not much to say except that Scotty man has been sleeping the entire time! We started at 10:45 and it's now 2:45 and he's still asleep. I see his eyes peeking every once in a while so he's close to waking up.
In fact soon as I'm done here I am going to wake him up otherwise he'll be awake all night. Scotty woke up about 3:00 ate his lunch and we were finished about 5:00. Right smack in the middle of Bay Area rush hour! It took close to 2.5 hours to get home. To my surprise Scotty feel asleep fairly early(10:30)considering he had a 3 hour nap. He slept all night and was up right before 6:00 am.
I didn't accomplish my goal of getting Scotty's appointments scheduled because I am still waiting for my referrals so that will move to next week. I did finally buckle down and make our flight reservations/rental car reservations for our trip to Camp Prime Time. I am getting so excited about it! I know Scotty will have a great time. I hope you all have a great weekend!
Hugs & Much Love
Kim

Monday, July 9th

Hi Everyone

We arrived home yesterday after our wonderful get away to the Coast. We picked a perfect time to be gone because it has been absolutely hot here at home with a 100 degrees minimum every day we were gone. This week it is suppose to be just as hot so I will miss the coast weather! There were a couple of sunny days while we were there but mostly overcast which was fine with us. We actually took a drive over to San Francisco on Saturday in hopes of seeing the sun. NO such luck it was just as overcast over there but we had a great time. I told Tom I wanted to go to SF (which is only about 30 miles from where we were in Half Moon Bay) and walk across the Golden Gate Bridge. We had never done that before and thought it would be something fun to do. It took a while to get across and back but we did it. It got a little windy and chilly crossing but Scotty didn't mind because I had the cover on his stroller that kept him warm. We all had fun.
Little Scotty man did a lot of walking while we were gone. The stairs that you take from the walking path to the beach are pretty steep and he did a great job going up and down them which he could of never done before starting treatment. He was a little tired when he had to walk up them but never once wanted us to carry him which he would of done in the past.

On Friday while we were still at Half Moon Bay we had a visitor. Marey is a Caringbridge mom that I met through her daughter's Ali website. Ali had received all her treatment for Leukemia at the same hospital where Scotty gets his ERT treatment. What a pleasure it was to meet Marey.. she is such a wonderful person and I know an awesome mom. Ali was out of town but I hope to one day also meet her. To read about her on her website you know what a brave young woman she is. Scotty was a little shy when Marey first arrived but quickly warmed up to her...I think it was the cookies and bubbles Marey brought for him (Thank You). Lol We had a nice visit there at our trailer and we also took a walk on that beautiful path to the Ritz Carolton. It was a great visit and I hated to see it end but I know that we'll see each other again. Thank you Marey for taking the time out of your day to come meet us!

On Thursday during Scotty's treatment our friend Lisa who use to be a nurse there at the Day Hospital who is now working on the transplant floor stopped in to see us. She is one of the 3 nurses that we were within 15 feet of the night before while we were watching the fire works. I thought it was her yet it was dark and she heard Scotty laughing but they knew it couldn't be us only to find out the next morning it was. She lives on the same street in Half Moon Bay that the RV campground is on so we had talked about getting together since we'd be there until Sunday. She called me and invited us for breakfast Sunday morning before we headed out. It was a great breakfast (Thank You Lisa) and so nice to visit with her. Scotty was such a good boy while we there..not bothering anything in her house just sitting on the couch and once in a while venturing up her stairs.

Not much going on this week. I think my mission is getting all Scotty's referrals to his Specialists at Stanford i.e. Cardiologist, Neurologist, Pulmonologist & Ortho so I can get his annual appointments made. Getting the referrals is really not the hard part especially since he has a wondeful Case Manager through our Insurance. The hard part is getting all the appointments scheduled because I want them on the same day. We'll see wish me luck!

Thank you all for checking up on Scotty we appreciate all your visits.

Hugs,
Kim

Monday, July 9, 2007 7:46 AM CDT

Hi Everyone

We arrived home yesterday after our wonderful get away to the Coast. We picked a perfect time to be gone because it has been absolutely hot here at home with a 100 degrees minimum every day we were gone. This week it is suppose to be just as hot so I will miss the coast weather! There were a couple of sunny days while we were there but mostly overcast which was fine with us. We actually took a drive over to San Francisco on Saturday in hopes of seeing the sun. NO such luck it was just as overcast over there but we had a great time. I told Tom I wanted to go to SF (which is only about 30 miles from where we were in Half Moon Bay) and walk across the Golden Gate Bridge. We had never done that before and thought it would be something fun to do. It took a while to get across and back but we did it. It got a little windy and chilly crossing but Scotty didn't mind because I had the cover on his stroller that kept him warm. We all had fun.
Little Scotty man did a lot of walking while we were gone. The stairs that you take from the walking path to the beach are pretty steep and he did a great job going up and down them which he could of never done before starting treatment. He was a little tired when he had to walk up them but never once wanted us to carry him which he would of done in the past.

On Friday while we were still at Half Moon Bay we had a visitor. Marey is a Caringbridge mom that I met through her daughter's Ali website. Ali had received all her treatment for Leukemia at the same hospital where Scotty gets his ERT treatment. What a pleasure it was to meet Marey.. she is such a wonderful person and I know an awesome mom. Ali was out of town but I hope to one day also meet her. To read about her on her website you know what a brave young woman she is. Scotty was a little shy when Marey first arrived but quickly warmed up to her...I think it was the cookies and bubbles Marey brought for him (Thank You). Lol We had a nice visit there at our trailer and we also took a walk on that beautiful path to the Ritz Carolton. It was a great visit and I hated to see it end but I know that we'll see each other again. Thank you Marey for taking the time out of your day to come meet us!

On Thursday during Scotty's treatment our friend Lisa who use to be a nurse there at the Day Hospital who is now working on the transplant floor stopped in to see us. She is one of the 3 nurses that we were within 15 feet of the night before while we were watching the fire works. I thought it was her yet it was dark and she heard Scotty laughing but they knew it couldn't be us only to find out the next morning it was. She lives on the same street in Half Moon Bay that the RV campground is on so we had talked about getting together since we'd be there until Sunday. She called me and invited us for breakfast Sunday morning before we headed out. It was a great breakfast (Thank You Lisa) and so nice to visit with her. Scotty was such a good boy while we there..not bothering anything in her house just sitting on the couch and once in a while venturing up her stairs.

Not much going on this week. I think my mission is getting all Scotty's referrals to his Specialists at Stanford i.e. Cardiologist, Neurologist, Pulmonologist & Ortho so I can get his annual appointments made. Getting the referrals is really not the hard part especially since he has a wondeful Case Manager through our Insurance. The hard part is getting all the appointments scheduled because I want them on the same day. We'll see wish me luck!

Thank you all for checking up on Scotty we appreciate all your visits.

Hugs,
Kim

Thursday, July 5, 2007 3:40 PM CDT

Hi Everyone

I hope everyone had a great 4th of July! We did/are being over here at the Coast...it is absolutely beautiful. It is 105 degrees back at home so we got out of time just in time.

We are at Scotty's treatment as I type and because I won't have internet access for the next few days I thought I would just let you know now that his treatment is going great. Hopefully we will be done in about an hour or so and we can get back to relaxing on the beach.

I'm hoping to meet another Caringbridge mom (Ali's mom) who lives close by this Friday. The plan is for her to come over to the beach where we are staying..I hope it all works out and we get to meet!

Thank you all for continuing to check up on Scotty....You know I would as I'm sure all of you would give anything to not have a Caringbridge site...this would mean we would have healthy children and or children who are healthy now but have gone through tremendous pain to get well...but reality is we're here and for me to know there are so many friends out there that check up on Scotty weekly means the world to me...I have family members (immediate) who know nothing about Scotty's treatment, they never call to see how he's doing ...yet I have all of you who've never met Scotty check up on him weekly. So THANK YOU from the bottom of our hearts for caring so much.
Hugs,
Kim

Tuesday, July 3, 2007 4:00 PM CDT

Tom, Scotty & I hope you all have a great 4th of July! We are heading out with our trailer Wednesday morning for the Coast...same place we've been going the last couple of months. It is going to be at least 100-105 degrees here at home for the rest of the week so I'll be happy to be out of the valley!
Hugs to you all

June 29, 2007
Hello Everyone

Scotty's treatment went well yesterday. I only had to give Scotty premeds 12 hours before his infusion and 1 hour before. In the past we have also had to give him meds 7 hours before also which meant we had to wake him up in the middle of the night to get him to drink some really terrible tasting medicine! Boy that was a treat...NOT

It's a really long day because Scotty had been up late the night before (maybe it was the steroids he had to take that got him buzzing...hmmmm) and of course I got up early the next morning so I was pretty tired, Scotty was tired & Aunt Annie who went with us again this week was tired so we were so excited when Scotty was finished only to find out the the new orders said we needed to stay for an observation period of 1 hour!

We watched the clock the whole time! As we were heading out I heard someone knocking on their sliding glass door (in the day hospital) to their room and I looked over and it was Spencer's mom whom I met a few months ago at the Day Hospital. Spencer also has MPS II but had a BMT back in Nov. Apparently he gets his treatments on Wednesday but had to switch this week. I wished I had known they were right in the room next to us....they had only been there an hour or so but it would of been nice to chat with them instead of on our way out...which Scotty & Ann had already left the Day Hospital so I had to get going to catch up with them. It was nice to see them and Spencer just looked so much older than a few months ago...amazing...he is so cute.

We made it home around 8:15 but on the drive Ann noticed Scotty's face was getting red..so I looked (or tried to) as I was driving but thought maybe it was because of the heat....the Bay Area is cooler than the valley but we were getting close to home which is the valley so I thought it just may of been that it was hot outside so I turned the AC on in the car and that didn't seem to help. He was definitely flushed from the treatment WHICH is not a bad thing...it is a million times better than his reaction last week. It's just funny that he hasn't had a red face since we took him off the premeds a few months ago...go figure. I watched him closely at home...of course this was Tom's first night back on the night shift so it was just Scotty & myself but he was fine. He finally fell asleep around 11:00 pm and I put him to bed and he slept all night.

I don't know if you noticed above that our friend Bryan passed away this week....It's just so sad to see someone so young pass away. I just can't even imagine how his parents are feeling. Tom's good friends with Bryan's dad but hasn't talked with him yet...although he did check up on him through his Uncle. Tom will be going to the funeral and will see him then. Bryan was such a good boy (well young man) I remember running into them one time while we were camping years ago and Bryan met Scotty for the first time and he was so good with him. Some kids just don't want to play with special needs children but Bryan was not one of them...he had fun with Scotty. If you can say an extra prayer for his family that would be nice.

I hope you all have a great weekend...I think we'll be hanging out close to home since Tom is working. Last weekend I was able to get away from Friday to Monday with my friend to her cabin...It was just the 2 of us and we had a very relaxing weekend. I think there was one night when we were actually able to stay awake until 10:00 pm! That is when you know you are getting old! Scotty & Tom had a great time staying home together...they went for a bike ride each night. Tom is such a great daddy! Scotty loves him so much.

Take Care and Thank You all for checking up on Scotty. Make Sure you sign his guestbook so we know you were here.

Thursday, June 21, 2007 5:28 PM CDT

I believe Scotty had his 2nd worst reaction today. I feel so bad because I was happy that we were not doing premeds this week...I could say that maybe he is catching a cold since starting summer school on Monday but at this point I don't care anymore we just need to do the premeds.
It took a while longer today for Scotty to respond to the reaction meds which was pretty scary. His lips were as purple as an eggplant and this time he actually was beginning to cry. So sad to have to watch.
These were the meds they gave him for his reaction:

Benadryl
hydrocortizone
epinephrene (we haven't had to use that med since 1st big reaction)
Tylenol for fever

We stopped the infusion completely......Scotty is doing fine right now except he is running a slight fever that has not broke for a couple of hours. I'm pretty sure they will never let Scotty do another infusion without premeds. My heart at this point is saying that's probably a good idea! My heart can not take it! In fact the charge nurse said it was definitely going to be a wine night when she got home after Scotty's reaction today.

My sister-in-law is with us today and she just left to get a cheeseburger and returned after a little walk to see Scotty's room full of people and the code blue machine in front of his door.

Scotty's Doctor wanted us to stay for a couple of hours for observation and I think we have passed that but he still is running a slight fever so we'll be here until that is gone.

I really thank God every day for our wonderful nurses & Scotty's Doctor at LPCH!

They are the best...

We finally arrived home tonight about 8:30. Scotty did fine on the ride home. He is running around the house now just a little slower...I think he is tired! I guess it's been a long day for all of us.

Thank you all so much for checking up on Scotty....it means alot and times like this it means more than I can say.

Tuesday, June 19, 2007 3:13 PM CDT

Hi Everyone

I thought I would do a quick update since I had a few minutes. I hope you all had a great time celebrating
Father's Day last Sunday.

We did....Scotty, Tom & I went to go to the show to see Shrek 3 and afterwards we went to dinner. We've taken Scottyman to the show many times and he's always done well..maybe he gets a little loud some times and will want to sit on our laps but he does good. This time he sat in his own chair the whole time and just munched away on his popcorn! We've seen funny shows that have kept his interest and I don't think he did so well because this is the funniest show he's seen because it wasn't (it was good but not the funniest). I'm not sure what the difference was but he was too cute.
After the show we went directly to dinner and Scotty sat through it like a big boy. I was watching him eat some cornbread (it's a must at Marie Callendars)and of course he would drop some that would land on the seat between his legs because he hates crumbs I watched him brush it off the seat! Tom & I were just cracking up at him. We finished dinner and decided to get a pie to take home with us. Once home we were so full that we decided we needed to go for a bike ride THEN we came home and ate the pie!
I think Tom would agree that he had a nice Father's Day.....he definitely deserves it.

Scotty started summer school yesterday. The Bus driver called Sunday to say that they would be picking Scotty up at 6:50 am YES 6:50 am for school that started at 8:30!

I DON'T THINK SO so I am driving him. On Monday when I was leaving the school about 9:00am up drives the schoolbus that came by our house that morning so they were just arriving! Those kids had been on that bus 2 hours! I can't believe it. I realize it's the first day but still that's insane. As a matter of fact as soon as I'm done here I am calling the Bus Co. and complaining. Scotty seems to be enjoying school and seeing all of his friends. He has the same 1:1 Aid (Kia) who's very good with Scotty. His old Aid is also working in his class and his last year teacher is the Principal of the summer school so lots of familiar faces. I really like his new teacher and can't wait for Scotty to begin his regular school year with him in September.

I hope you all have a wonderful week. I promise to update after Scotty's treatment Thursday or Friday morning.

Friday, June 15, 2007 8:22 PM CDT

Hi Everyone

Well today we had to come back to reality and 102 heat! It was tough leaving the beach knowing how hot it was going to be at home. :( We had a wonderful time and made some new friends! Couple of nights before we left we had actually met 3 families from our area that were also camping there at the park. Last night we had fun sitting by a campfire with a couple from Modesto. Her name is Sue and believe it or not she had worked with Special Needs children in Scotty's school district...she worked with the older kids in high school. She is now finishing up her nursing classes and should be graduating in Dec as a RN. She really was very interested in Scotty's Syndrome and just was so good with him. She has a 14.5 yr old daughter whom Scotty really liked. Hopefully we will be able to get together with them here at home.
Scotty's treatment went great and we were back to camp by 5:30. I switched out a picture of him in the beach wheelchair with one I took when we arrived home. Daddy was unloading the trailer and Scotty wanted to wear his hat! Is this not the CUTEST picture ever! I put the other picture on his slide show so you can still see the beach wheelchair. Not too much happening this weekend except finishing cleaning up the trailer. Tom cleaned it out in the middle of this terrible heat...I think tomorrow morning I will get in and scrub it before it goes back to storage.

Scotty starts summer school on Monday. I'm anxious to see his new teacher and watch him in action. I know he will be great and Scotty will just love him.

I hope you all have a wonderful weekend and Happy Father's Day to all those special daddy's out there! We couldn't do it without you daddys.
Hugs
Kim

Thursday, June 14
We are having a great time at the beach! Scotty is just loving the walks, the bike rides and of course chasing all the birds on the beach or in the sky! It really doesn't matter where they are now he just wants to chase them...so funny. The picture of Scotty above is in the beach wheelchair the State Park lets you use for free... Scotty obviously can still walk but for long walks on the beach this works just perfect...both his regular stroller and the bike trailer/stroller have real thin wheels so it's kind of hard to push them through the sand.

It only took us about 30 minutes to get to the hospital this morning from where we are staying...boy I could really get use to that not to mention the scenery is absolutely beautiful! We all packed up and came this morning including Tom and our dog Coco. We are taking turns going down to the car checking on her and taking her for walks (well I haven't done it yet). Believe me she's loving being here rather than back at the trailer by herself. It's nice in cool in the underground parking also.

They accessed Scotty's port very quick this morning and it was a little better than last week. Hopefully he will eventually get use to it. He is now sleeping and will probably continue to sleep for a couple of more hours. Once we are done here it's back to the trailer (and the ocean) for our favorite dinner of fish and chips! We will head back home to reality tomorrow.
Thank you all for checking up on Scotty man.
Hugs,
Kim

Thursday, June 14, 2007 1:36 PM CDT

We are having a great time at the beach! Scotty is just loving the walks, the bike rides and of course chasing all the birds on the beach or in the sky! It really doesn't matter where they are now he just wants to chase them...so funny. The picture of Scotty above is in the beach wheelchair the State Park lets you use for free... Scotty obviously can still walk but for long walks on the beach this works just perfect...both his regular stroller and the bike trailer/stroller have real thin wheels so it's kind of hard to push them through the sand.

It only took us about 30 minutes to get to the hospital this morning from where we are staying...boy I could really get use to that not to mention the scenery is absolutely beautiful! We all packed up and came this morning including Tom and our dog Coco. We are taking turns going down to the car checking on her and taking her for walks (well I haven't done it yet). Believe me she's loving being here rather than back at the trailer by herself. It's nice in cool in the underground parking also.

They accessed Scotty's port very quick this morning and it was a little better than last week. Hopefully he will eventually get use to it. He is now sleeping and will probably continue to sleep for a couple of more hours. Once we are done here it's back to the trailer (and the ocean) for our favorite dinner of fish and chips! We will head back home to reality tomorrow.
Thank you all for checking up on Scotty man.
Hugs,
Kim

Friday, June 8, 2007 11:46 AM CDT

Happy Friday Everyone

I was hoping that Scotty's treatment day would be a little shorter now that he has the port but someone had other plans for us yesterday.
Our morning started off terrible....it took us 4 hours to get to the hospital 7am to 11am. There was an accident on the freeway where a big truck had turned onto it's side...it was a huge truck carrying Sod...so there was the mess of the sod and dirt all over the freeway..so 3 of the 5 lines were closed. 80f the time Scotty will sleep on the way but not this morning he was wide awake the whole trip and did great. The full 4 hours he just sat in his seat laughing and having a good time I knew I had the DVD player if he got a little anxious but he didn't so I didn't have to play any movies...I don't know what would of been worse stuck in traffic with no dvd player or stuck in traffic playing Mary Poppins on the DVD player! I just don't think I was up to Mary's singing or listening to any movies and luckily Scotty was pretty content. By the time we arrived and got to our room then Scotty was beginning to get a little cranky I knew he was tired. We didn't start the infusion until 12:30. Scotty was still a little scared of them accessing the port...now what he has is them coming towards his face with a needle so that didn't make him real happy. This will take some getting use to I'm sure. I think once they got him hooked up he was already asleep and slept for 3 hours. The infusion went
perfect no problems at all. We were done a little after 6:00 pm and home a little after 8:00 pm. As soon as we got in the house Scotty was wired for sound! He was just buzzing all over. I'm not sure what was up with that...we were wondering if it had anything to do with he port and the drug now just going straight to his heart so quickly? I'm going to have to ask about that. Thank goodness daddy is a night owl because when I went to bed about 11:00 pm he was still wide awake. It's Friday morning now at 10:00 am and he is still sleeping.

Today is the last day at school but it is minimum day and I just talked to his teacher who said they would be going to another teacher's classroom because she had other things she had to do. I guess I will just keep him home. Sounds like it's just a free day anways. We will see most of his class in a couple of weeks at summer school. Scotty's teacher will be the principal and his next school year teacher will be his summer school teacher. Plus his 1:1 Aid will also be with him during summer school.

Monday we are heading over to the coast again with our trailer. We are staying there until Friday. Scotty's hospital is about 20-25 miles away from where we are staying so we will just drive over there on Thursday and come back to our trailer afterwards. I'm looking forward to 5 days of staring at the ocean! I need to go find some good books to read while we are there. Believe it or not this state park even has wireless internet! I love CA! Our tax dollars at work.
I hope you all have a great weekend. Thank you again for stopping by to check up on my little doodle.

Kim

Friday, June 8, 2007 11:46 AM CDT

Wednesday, June 6, 2007 7:03 PM CDT

Thursday @ treatment: I have to tell you our morning started off terrible....it took us 4 hours to get to the hospital this morning! 7am to 11am. There was an accident on the freeway where a big truck had turned onto it's side...unfortunately it was a huge truck carrying Sod...so there was the mess of the sod and dirt all over the freeway..so 3 of the 5 lines were closed. 80f the time Scotty will sleep on the way here but not this morning but he did great. The full 4 hours he just sat in his seat laughing and having a good time I knew I had the DVD player if he got a little anxious but he didn't. By the time we got here and got in the room then Scotty was beginning to get a little cranky I knew he was tired. We didn't start the infusion until 12:30. Scotty was still a little scared of them accessing the port...now what he has is them coming towards his face with a needle so that didn't make him real happy. I think once they got him hooked up he was already asleep and is still sleeping at 3:15. Hopefully everything will go smoothe the rest of the day. I'll update later when we are home.
Kim

Hi Everyone

I thought I would let you know that Scotty has been doing great since being home. I mean it's amazing that he is not even bothered the incision that is healing. I guess maybe he would play with it if he wasn't wearing a shirt. Scotty has this strange habit of finding scars or any imperfections on your body and just playing with them....He knows daddy has one on his back and will always find it when he's shirtless.

I don't know if I told you that last week during Scotty's surgery he had a loose tooth that decided to fall out maybe with everything going on through his mouth for sedation it helped the loose tooth along but it was nice that they were able to catch it before it went down. They gave it to us in the recovery room in a little container.
Tom said he and Scotty were sitting on the couch last night well actually very early this morning (mommy let him take a nap so he was up late)and Scotty took something out of his mouth and then handed it to daddy? It was another tooth! What's exciting is that Scotty was able to take the small tooth out of his mouth, hold on to it and hand it to daddy!
About two months ago daddy and him were sitting in the same place and Scotty spit something out? It was a tooth. I don't know why he spit one out and the other he took out himself but either way it's exciting!

We are having to do some premeds this week. Scotty's Doctor wants to do them until he has 3 successful infusions. 1 down 2 to go.
Well I have to get some things together for tomorrow.
Keep your fingers crossed for Scotty that his first infusion with his new Port is successful!

Thanks for checking up on little Scotty man
Hugs,
Kim

Sunday, June 3, 2007 3:30 PM CDT

Hi Everyone
I hope you all had a nice relaxing weekend. I thought I'd better give you a quick update since we returned home to let you know that Scotty is doing great. You'd never know that he had a port inserted. He hasn't complained of any pain at all. Well that's not completely true because yesterday he was constipated, he hadn't had a bm since last Wednesday but we gave him some stool softner and a supository which did the trick in a couple of hours.
Today he and daddy went out and got their haircut and he was a very good boy.

This coming week will be his last week for school and they are only minimum days. So he will most likely only go Mon, Tues, Wed since treatment is Thursday. I don't think much will be happening Friday but we'll see how he feels after treatment.
He will then start summer school on the 18th. Tom has taken some vacation days off so hopefully we'll get away for a while before summer school starts.
Thank you all for your prayers for Scotty.
Hugs
Kim

Friday 9:30PM
Scotty just finished with his infusion & flush! Woohoo He did great. Dr. just walked into the room and checked up on him and said great then you guys can go!!!!!!!!!!!!!!!!!!!!! I had just went down to the car and got our overnight bag but home is sounding really good right now. If Tom wasn't here I don't think I'd leave but with both of us I'm sure the drive home will be fine. Yeahhhhhhh
Gotta pack up.
Hugs
Kim

Friday 11:30AM

Well our normal happy boy wasn't so happy this morning! I told Tom we may of seen our first sign of him being in discomfort. I went to take some things down to the car and when I came back Scotty was awake and I could tell instantly not happy. I also notice he was very very flushed on his face and warm to the touch. I called the nurse to do his temp but it was fine. He's just pretty lathargic. I told the Dr. this morning that Scotty isn't himself and is red ..he said well I don't think it's a reaction because we haven't given him meds so we'll give him meds then see how he feels????????
I said if we were in Day Hospital they would not do the infusion because Scotty is sick... well he left and a little while later nurse came back with premeds and I said NO we can't give him premeds because we are masking something else happening she asked if I told the Dr. that and I said yes but obviously he's not getting my point ...he had left so she had to page him again... he came back and I said I'm not going to do the infusion with Scotty not feeling well...call Genetics or Day Hospital but lets see if the tylenol helps that we just gave him...he said he understood that we know Scotty best I think kind of hestitantly so now we are just waiting....Vicki our wonderful Genetics nurse came over and saw Scotty and knew no he's not well. Now it is kind of the waiting game. I was thinking I hate to be here 2 days then leave without doing ERT but realized (duh) I'm not leaving anyways until he is 100 The drug has been mixed but is good for 48 hours (refrigerated).
This was the first time in 3 yrs Scotty has had surgery and the last time was just ear tubes so I'm sure his body just needs to rest some more.
I'll update a little later to let you know what is happening.
Thank you all so much for checking up on him. It's so great to know that we have so many friends out there keeping Scotty in their prayers.
Hugs & Much Love
Kim

*UPDATE* 1:40 am Friday (yes 1:40 am!)
Sorry if some of these may of been mentioned before... I did put some photos on the slide show. Sorry you may have to sit through all of them to see...I'll fix that tomorrow. Forgot to mention Scotty lost a tooth during surgery...they were able to keep it for us. We should be starting infusion tomorrow morning around 7:00 am.

Scotty FINALLY feel asleep around 11:00 pm tonight. When Tom told me his bed in the family lounge made into queen size I had this great thought that I would go hit it for a few hours then we'd switch....tried it but I couldn't do it so came back to room got in bed with Scotty who at that time just couldn't stop laughing and trying to flirt with the nurse outside our door (I think he was all hyped up on the predisone they gave him for the infusion tomorrow morning). He is finally asleep so I climbed out of his bed because I just can't sleep now there is a boy in the room next to us YELLING Haven't seen his mom all night poor guy

It was a long day but Scotty was so good. Especially being in the recovery room for 5 hours! He was slow coming out of the sedation
(they say he has a slow metabolism) but once he was ready to be moved the big question became where to???????? The 3rd floor was starting to question him coming there because of his reactions and their unfamiliarity (is that a word) of the infusion. They wanted him sent to ICU. I think ICU was ready to take him but I didn't want him to go there because I was told parents could not sleep in the room at night with their children......SO THAT WAS NOT WHERE WE WERE GOING. I told them they can call all the Doctors but they had to understand that I did not want the infusion to happen because it was getting too late. By the time we would get to the room and settled it would be 6:00 pm before they started.....No we are not alert enough (since being up at 2:00am) to have to watch over new nurses who were doubting themselves already. We were staying anyways just let Scotty rest and they could start first thing in the morning... ALL AGREED

*******NEW*****
Night nurse just came in wanted to look at Scotty's port or at least the line......GUESS WHAT the cap is gone off the line! I don't know for how long.....S*(& She was going out to call Dr. now. She said line would most like need to replaced and we shouldn't use the port in am....which Obviously I agree... CAN YOU BELIEVE THIS. What the nurse just told me that she doesn't feel anything could of gone through because there is a clamp on the line also before the cap. They are still going to change line very shortly.
I just went out of room remember little boy yelling next room....there are at least 10 adults standing outside his room...he's still screaming...
WHERE IS HIS MOTHER???????? I'm sure getting a good nights rest at home. I see no sleep in my very near future. He's crying for his mommy.... oh I swear if i had her number..... I want my mommy......
(me crying for him)

back to Tom.......I went and woke him up to ask him if he saw any loose cap? Nope. At least if I found it in the bed I would know that it happened there.
I'll keep you updated. sorry to ramble about the boy ....say little prayers for him that his family shows up soon.

Thursday, May 31 9:00 pm

Sorry it took me so long to update....Scotty did great. He went in around 10:30 and was in recovery by 12:00. Of course it was the time between 12:00 when they came and told us he was out and 1:00-1:30 when we finally got to see him that I bit all my nails off (and I'm not a nail bitter). We were in recovery for a while because it really took Scotty quite a while to come out of the sedation. When he did he was his happy usual self. I have to say we didn't see one tear today! What took so long was they were trying to decided where to send him for infusion. 3rd floor general or ICU...... at that point I knew it was getting to late to do the infusion and told them that we'll have to do it in the morning. I mean we are here anyways why stress out all the nurses who are not use to this ERT. I personally was not feeling alert enough to watch new nurses do the infusion into wee hours of the night. I didn't want to go to ICU because I was told parents can not sleep in the room so I pushed for the 3rd floor and am infusion and that's what we got. Now daddy and Scotty are resting in bed and looking VERY RELAXED! I will post some pictures in a little while. I want to say THANK YOU so much to Kim Lee who brought us over some goodies to eat! Thank You Griffin too...I know he was a little scared to come to the hospital with him mom especially since he had his ERT today at Oakland Hospital. Hopefully we will get to meet Griffin soon.

THANK YOU EVERYONE FOR YOUR THOUGHTS AND PRAYERS! THEY WORKED.
HUGS AND MUCH LOVE
KIM, TOM & SCOTTY MAN

PLEASE KEEP LITTLE SCOTTY MAN (AKA Doodlebug & the doodle)
IN YOUR THOUGHTS & PRAYERS. TOMORROW HE IS SCHEDULED FOR HIS PORT SURGERY AT 9:30 AM. THEY WILL ALSO BE REMOVING EAR TUBES AND HOPEFULLY SOME DENTAL WORK. THE PLAN IS TO ALSO ACCESS THE PORT FOR ERT ALSO.

HUGS & MUCH LOVE,

TOM,KIM & SCOTTY

Wednesday, May 30, 2007 11:44 AM CDT

PLEASE KEEP LITTLE SCOTTY MAN (AKA Doodlebug & the doodle)
IN YOUR THOUGHTS & PRAYERS. TOMORROW HE IS SCHEDULED FOR HIS PORT SURGERY. THEY WILL ALSO BE REMOVING EAR TUBES AND HOPEFULLY SOME DENTAL WORK.

HUGS & MUCH LOVE,

TOM,KIM & SCOTTY

Thursday, May 24, 2007 8:14 PM CDT

FRIDAY UPDATE: Scotty does have an ear infection. I think this is the reason for his reaction last Thursday! Pray that the Doctor's think so also so we won't have to put him on all those premeds!

Hi Everyone

Well we just got home from Scotty's treatment and I wish I had the same ole news for you that "treatment went great" but unfortunately not this time. About 2 hours in to the treatment I noticed Scotty's fingernail beds on one hand were extremly purple so I checked to see if the BP cuff was taking his BP which causes his arm to be red and hands purple while taking BP but it wasn't so I immediately looked at his other hand and bingo purple fingernail beds also. About that time Scotty started to tremble like he does so I immediately called for the nurses. Scotty begins to get this real scared look on his face while he's having reactions and this time wasn't any different. He started to gag some and was trying to vomit but could only get a little spit up. His breathing was ok but you could tell that if it had gone much longer without meds there definitely would of been a problem. By the time Scotty's Genetics Dr. and Nurse arrived Scotty was still not himself (which took about 45 minutes until he was laughing again)..... Scotty's Dr. was just not happy with what Scotty was doing and made the decision that we would not continue the Elaprase at all today. He wanted us to stick around for 3 hours so Scotty could be observed which we did. While we were all sitting around staring at Scotty man we were just puzzled at what may have caused this to happen after going so long without any problems. Scotty's Allergy Dr. also came over and everyone decided that he needed to be put back on the premeds. BUMMER.
We headed home about 4:30-5:00 and I was just racking my brain as to what may have been different??? It then dawned on me that his teacher called me during school yesterday and wanted to know if Scotty was on antibiotics because he had just had a big blowout at school with a very loose stool. I said no he wasn't maybe it was just a bug. Then I remembered lasted night before bedtime he had another very loose stool. I called the Genetic's nurse from my cellphone and said I think he may have a ear infection which compromised his immune system. Scotty's temperature was ok today but he doesn't always have a temp with his ear infections. I was able to get a hold of his pediatrician's office so I am taking him in tomorrow to have his ears looked at. If he doesn't have an infection fine but if I don't check then I'll never know if this may have been what happened today and we could hopefully avoid the steroids they now want him to take. I kick myself for not having someone look in his ears today but as long as I can have them looked at tomorrow that's fine. We did get confirmation today that Scotty will have the Port surgery next Thursday. The plan is to admit Scotty get port, remove ear tubes and do ERT using the port. He will also be kept overnight for observation.
Please say extra prayers for him next week. Sedations are so scary for our children because of their airways. I know it's going to be a long week full of worrying :( I don't often mention here that I am worried so you know if I'm writing it....I'm worried. Thank You so much for checking up on Scotty. He likes to keep us all on our toes!
Love you all!
Kim

Wednesday, May 23

I think I mentioned in my last journal that our friends from San Diego were coming to visit last weekend. They did make the trip and we had such an awesome time with them. I was so sad when they left on Sunday. This was their first vacation in at least 5 years so we felt so blessed that they choose to drive 8 hours to visit us. Their daughter's both have MPS I. The oldest is Serrina who will be 7 on Friday and Autumn is 18 months. On Saturday after having breakfast here at the house and visiting for a while we decided just to take the kids to the park. We walked through the park and then decided to just lay out a blanket and just layed there for a couple of hours. The kids had a great time playing and walking around. That night we had a barbecue and they headed back to their hotel around 9:30. They came back in the morning and we visited as long as we could before they had to head out. :( It was just so good to see them. We'll be seeing each other again soon I'm sure.

I know I told you about our friend Ciara who is in the hospital right now and asked for your prayers for her.
She is still there in the hospital...a friend who has met Alicia and her family before went with me yesterday to see them in the hospital. She still is not over this...they really are not sure what is causing this. It's just sad to see her there in the hospital. Please continue your prayers for her.
You can visit her website at
www.caringbridge.org/ca/bennettboys.

I think we are looking at May 31st for Scotty to get his port. Hopefully tomorrow I will learn more while we are at treatment. I will keep you all posted.

Thank you checking up on Scotty...we appreciate it so much.

Hugs,
Kim

Saturday, May 12, 2007 1:49 PM CDT

Scotty & I would like to wish all of our wonderful friends a Happy Mother's Day. You all are the best moms ever. Not only do you have the overwhelming love for your own child/children you have also found room in your heart to love Scotty and all the other children you are checking up on daily or weekly.
ENJOY YOUR VERY SPECIAL DAY ...YOU ALL DESERVE IT!

Scotty's treatment went well Thursday as far as no reactions but he did experience some infiltration with his IV. Scotty's IV was in his arm after 2 unsuccesful attempts in his foot. About 2.5 hours after we started one of the nurses noticed the infiltration. It was about the size of a quarter so it was too big and couldn't have been leaking too long. We're not too sure what happened because these iv's are pretty secure. Once they have access they put this other little device over the iv that secures it in place and is taped down. When the nurse went to remove it after they were able to get another IV in him it was not loose so I think it just may of leaked. It was not too big of a deal EXCEPT they had to call the IV Access Team down to start new IV. These ladies know Scotty well and usually can get him on the first poke but this time it took 3. The first nurse tried twice and said that was it she wasn't trying again so the other nurse tried and she got it. They all felt so bad for Scotty crying...they would stop between pokes and let him calm down and chill out before trying again. Once we got that done we were up and going again but it did put us behind about an hour. When we were done Scotty's nurse Tami was just amazed at Scotty...she said you know he lays there all day watching his movies not trying to or even wanting to get out of bed and we get done and he hops off the bed and walks out. Which reminds me when we walked in that morning you could see even after our first trip the week before to the new Day Hospital location that Scotty was already adjusted. He walked right over to the chair where they do his first vitals like he's been there a million times before. We have to walk by the other rooms that have big glass doors and Scotty just loves this because he can see him in the glass....so now he can do his little dance moves and watch himself! One of these days I will tape it so you can see him...funny funny funny!

Our trip last weekend to Half Moon Bay was wonderful! We had a great time just doing nothing. We took lots of walks but other than that we just sat around visiting. This coming weekend we have some friends from Southern CA coming to visit us. Both their daughters have MPS 1. We visited them last Christmas when we were down south. I'm just keeping my fingers crossed that everyone stays healthy enough to make the trip. I can't wait to see them.

Thank you for stopping by...it means the world to us.
Happy Mother's Day to the best friends ever!
Hugs,
Kim & Scotty

Friday, May 4, 2007 9:01 AM CDT

Hi Everyone

I wrote this whole journal last night and went to check it this morning and it was gone! I hate that.
Scotty's treatment went great yesterday! Despite the fact that we had to deal with extra traffic due to the burned bridge and having to go to the Day Hospital's new location for the first time Scotty did great. Our commute took an extra half of an hour (on top of an already long commute)and luckily Scotty slept through most of it. I had originally heard it was going to take 3-4 months to repair the bridge but on the radio yesterday they said the damage is not as bad as they thought and will be able to repair some of it within 7-10 days! This is a good thing...otherwise we'd be traveling to the hospital the night before and staying in a hotel. The new Day Hospital is great and it is much closer to the entrance of the hospital so close that I didn't even take Scotty's stroller out yesterday. It is about 100 yards from where we drop off the cars for valet parking but if we come out the back doors of the Day Hospital we are 50 feet!
Scotty was a little confused and scared when we entered the new DH....he immediately sat down at the little table and just looked around. There were some new faces in there and he didn't see any he recognized right at first then Mary the nursing supv. came right over to Scotty and gave him a hug and he reached out for her arm to rub..it was so sweet. He then started seeing the smiling faces of his wonderful nurses and was as happy as can be. The new rooms are a little smaller but so much nicer (and they were nice in the old DH). Everything is new and clean...they've got these great flat screen tvs that are on bars that you can move around. It took us all a while to get into the groove of the new space and new equipment so we didn't get started until 11:30 and then Scotty was fast asleep for a good 2 hours.
We were heading home about 5:45pm and I just knew the traffic was going to be horrific and mentally prepared myself but believe or not I think we made it home in less than 2 hours.....it was like a ghost town on the freeway I don't know where everyone was and didn't care I just flew on home.
When we arrived at home Tom was busy packing up our trailer for our weekend trip with some friends to Half Moon Bay. We'll leave some time mid afternoon on Friday and come home Sunday. Half Moon Bay is about 25 miles from Scotty's hospital so we get to turn around and do the wonderful drive again tomorrow, traffic shouldn't be as bad since we are leaving later.
Thank you for taking the time to check up on Scotty. He has the bestest friends ever!

Kim

Love,
Kim

Thursday, May 3, 2007 7:01 PM CDT

Hi Everyone

We are still at treatment but hopefully we will be done with in the next 45 minutes. The commute here was a half hour longer due to the collapse of the burned bridge so that wasn't as bad as I thought. The good news is I heard on the news today that they are not expecting to be done rebuilding this within 7-10 days which is so much better than the 3 months they were originally saying!

Woops we are done! where did time go. I will write when I get home.

Friday, April 27, 2007 4:58 PM CDT

Hi Everyone

Scotty & I are home from our little overnighter that included 2 Doctors appointments for Scotty and his treatment the following day. I had made his appointments for his Genetics visit and an ENT visit the day before his scheduled ERT so we could just stay the night.

Everything went good.....
our first appt was with his Genetics Dr. whom we see quite often during Scotty's ERT. Scotty's Doctor, nurse or both will walk over to hospital and check in on Scotty during his ERT. So our visit with them was the annual visit. We updated his file, took some measurements and ordered some labs (to be withdrawn when accessed the next day for treatment). Scotty's liver and spleen are smaller since starting ERT. Even though his stomach has not gone done as much or as quick as some of the other boys it is nice to know that they are getting smaller. I think his tummy still being larger may simply be due to the fact that he is a carb phine! So we should probably start thinking about changing his diet since his appetite has increased since starting the ERT. All in all Genetics visit went well.

2nd appt was with ENT for the airway eval. We do have a local ENT that Scotty sees often but needed to see one there at the hospital since his sedations will be done here and they wanted his airway evaluated. I don't think she knew Scotty had Hunter's until our appointment which I tried to make sure they were aware of before.
So when she came in she wasn't sure what she was to do.....to scope him or not to scope him. First she said no I don't want to then realized well if they want an
air way eval then we should scope him....mind you Scotty has never had this done. It wasn't a full bronchoscopy it was just of the upper airway....either way camera down nose. So she said she'd be quick in and out in less than a minute....Scotty was sitting on my lap and 2 others were helping hold him you could see on the screens what the camera was seeing but I didn't pay much attention because I was busy with Scotty and knew I could see later
on the tape. I saw the Dr. say something to the nurse but coudn't hear what it was. When we get done she says his airway is definitely narrow and could see the deposits in his airway but sedation is "doable" which I really knew because of his last sedations. The nurse then takes me over to another girl to set up an appt with surgery. We were talking about the scope and I said I really didn't get to see what was on the screen but could view it later on film right? that's when she said NO.... during all the camotion the Doctor didn't hit record! BUMMER Hunter boys airways are one of their biggest issues and to know we were going to get it on film was great. Maybe next time. This was our only issue....the ENT Dr. was great and I really liked her. She said his ear tubes must come out during the next sedation and explained why which made total sense something his regular ENT has never mentioned. She suggested we keep them out for a bit and give his ears time to heal and get over any infections that are a result of the tubes being in there for so long.

That night we met one of the Day Hospital nurses for dinner. She has now moved to a different dept. so we don't see her much but she always comes down and visits us during treatment. That was a lot of fun...Scotty was a good boy and sat there for a 2 hours while we visited. Scotty's little nose and throat must of bothered him that night because he (we) didn't sleep well at all so we were pretty exhausted on Thursday during treatment. Scotty slept a little during treatment as I was laying next to him in bed but not a real long nap like he really needed again I think his nose was still bothering him. Luckily we got in 1 hour earlier that morning since we were already in town and Scotty was up and going in a little over an hour. The Vascular Access team had no problem sticking him and the nurse had no problem drawing blood from that access prior to starting Elaprase. Treatment went smoothe with no problems at all except a little bit of constructin noise. That was Scotty's last treatment in that Day Hospital..we will now be going to the new Temporary home of the day hospital. It is suppose to be extrememly nice all new with flat screen tvs in all the rooms etc but very small.(I don't know how long before the permanent home of the DH is suppose to be ready) I know that there are still private rooms there and Scotty will be getting one during his treatments! YIPPEE .. we were heading home by 4:00 and arrived home at 6:15. Scotty & I were happy to see daddy. I made it to 7:45 then I was out like a light Scotty was up with daddy until he crashed around 9:30.
I will keep you posted on the lab results and our surgery appointment. If I haven't mentioned before what are we doing with surgery we are taking steps to get Scotty his Port.
I hope you all have a wonderful and safe weekend. Thank you so much for taking the time out of your very busy lives to check up on our Scotty man. It means so much to us that he (we) have such wonderful, caring friends who love Scotty so much.
Hugs and Much Love
Kim

Thursday, April 19, 2007 10:33 PM CDT

Hello Everyone

First and most importantly Thank You all so much for stopping by to check up on Scotty.
Scotty's treatment went great...once again we were home before dark! Boy I
sure could get use to that.
Scotty was a big boy and did great...I had to post the picture I took of him warming up his feet for IV access...
He was so relaxed he fell asleep.. of course I slowly woke him up before they started to poke him. He stayed awake for a couple of hours then took a nap. The ride home was long because of traffic but we're pretty use to it
by now. Next week we will be going over to the hospital on Wednesday for a couple of appointments (ENT & Genetics clinic) and we will stay the night and start his treatment early Thursday morning.

I hope you all have a great weekend.
Hugs & Much Love
Kim

Thursday, April 12, 2007 11:45 AM CDT

Scotty's infusion went great today....we actually started early enough that we got home before dark! I think it was around 6:45 when we got home. The drive was longer because of the traffic but it was so nice getting home early...not to mention driving home in the daylight when I can see Scotty's face and able to watch for any color changes... when we drive home in the dark I keep the dome light on but it's not the same.
Thank you for checking up on Scotty.
Kim

Wednesday, April 11, 2007
Hello Everyone

I hope you all had a wonderful Easter.....we had an awesome time at the Coast. It was so beautiful there! We did a lot of bike riding and walking. Scotty just loves going any where in the trailer...it doesn't matter where. He is so good everywhere we take him. I don't know if you saw the new pictures I put on the slide show of our trip but there are a few of Scotty just cracking up and I have to tell you that this is how he is all the time. He never cries, he has never in his life thrown a tantrum and he very rarely gets mad. He is just a pure joy to be with all the time.....he loves chasing birds and there are a lot of mallards that walk around this park and just lay on the grass so if Scotty sees one he either chases them or wants me to. This is the same for all the birds on the beach or piegons on the ground....the more daddy chases them with Scotty in the stroller the harder he laughs. Even if we are walking with him in the stroller and he sees them in the sky flying above he is screaming at them...you should see the strange looks we get from everyone around us! OH WELL if makes Scotty happy I don't care what they think.

Like I mentioned above we did a lot of walking and bike riding....when we go for walks we just automatically put Scotty in his stroller I guess out of habit. What we saw this last trip was very exciting...Scotty would just grab our hands and want to walk and I'm not just talking a small distance either...he would walk further than we have ever seen him walk at one time and he did this several times. He loved to walk up to the swimming pools and watch the kids swim. He didn't want to swim he just wanted to watch them. It was cute.
While we were there we met another couple who had a special needs son who is 17.. They were riding the bikes around in the park and I guess saw Scotty's bike trailer sitting in our site and stopped to look at it...they were surprised because they had the same bike trailer for their son but a little older version. Their son's name is Nicky and he has Down Syndrome and CP. They didn't find out about the second dx of Cerebal Palsy until he was 10. It was really great to talk with them. They live in So. CA so I hope we can keep in contact..we exchanged all info (emails,phone #s etc).

We arrived back home (reality) last night....it was a little cold here and we were tired so we unloaded what we needed to out of the trailer and I am doing the rest today but it's raining so I can't do it now :( Of course being gone also means coming home to a stack load of mail but there were some great cards in there from friends for Easter which was much appreciated. Scotty also had received a big box in the mail from his cousins in San Diego...it was an Easter Basket full of popcorn items! Scotty loves popcorn and it was so sweet of them to remember and send it to him. THANK YOU SARAH, ALLY, WENDY & ROD... we love and miss you guys so much.
Well I had better get working on the laundy.
Thank You for checking up on Scotty.
Kim

Friday, April 6, 2007 5:45 AM CDT

Hi Everyone

Wow this was a quick week! I've been so busy I never got to do an update.....last week during Scotty's treatment they were concerned with a sore on his nose...we did a swab (culture) inside of Scotty's nose. Last Saturday I got a call from the Infectious Disease Dr. who told me that Scotty tested positive for Group A Strep. I have only heard of Strep throat and never knew that it could also be a skin infection but now I know. The Doctor who called went ahead and called in a prescription for some antibiotics for him and he seems to be doing fine. We went to treatment today (which Scotty did great)and the nurses seemed to be happy with how the sore was healing.

Tom told me last Saturday night that after I had gone to bed on Friday night he and Scotty were hanging out on the couch and he heard and/or saw Scotty spit something out of his mouth so he picked it up and it was his tooth. Now Scotty has lost quite a few teeth and this is only the second one that we have been able to find. When he told me about the tooth of course I wanted to see where in his mouth it came from and in doing that I saw a new tooth coming up in front of a baby tooth which kind of freaked me out because I had never seen this. With the other tooth that he lost means he sort of has an open wound in his mouth and I was concerned about the strep infection getting into that wound because of Scotty putting his hands in his mouth after he scratches his nose or touches that other sore in some way. I knew he had started the antibiotics but this still concerned me until I was able to speak to his local dentist here on Monday. She said that he should be fine but to go a head and bring him in the next day so they could check it out. I just didn't know if it needed to be pulled and if it did I needed to call his Dentist at Stanford Hospital for that We made the appointment for 1:00. I had a 8:50 dentist appointment that morning myself and as I was getting ready Scotty's Service Coordinator from our Regional Center called and wanted to make sure I remembered our informal Fair Hearing Meeting (with a Judge) was that morning at 9:50! NOPE I HAD FORGETTEN ABOUT IT... I told my dental hygentist that she had to be quick because I had another appointment. I made it on time and that meeting took a couple hours with no resolution only a new meeting...... I went and picked up Scotty from school and took him to his dentist and he was so good.....we had to wait in the exam room for about 30 minutes but I think that actually gave Scotty time to relax a little. Of course they had a movie playing so he was pretty entertained. They had the cutest little exam chairs for the kids...just like the grown ups but smaller...Scotty has always sat on one of our laps but he sat in that chair like a big boy...it took him a while before he would put his feet up on the chair...I think he felt as long as his feet were on the ground he could make a quick exit! When the dentist was able to get a quick look in his mouth she explained that she sees this a lot and didn't feel like the other tooth needed to be pulled especially if it wasn't bothering Scotty and it wasn't. It was a little loose so hopefully it will be falling out soon.
Tuesday afternoon and Wednesday I spent a lot of time making Easter goodie bags for Scotty's class then I thought I should really make some more and take them to the Day Hospital for the other kids getting their treatments....that meant another trip to the store but I'm really happy I did it. The treat bags were real cute and of course it's a holiday so I made the nurses/Doctor carmel apples which they all just love.
We also made the decision this week that we were going to take our trailer over to the Coast for Easter. Tom went and picked up the trailer from storage on Tuesday and he has/had to fun job of cleaning it because it's been a while since we have used it. He stayed home today while I took Scotty to treatment and did the grocery shopping for the trip and a few other things I had put down on his honey do list. I just have to put my clothes in the trailer and we'll head out this morning and will return next Tuesday. I'm really looking for to relaxing by the ocean and hiding Easter eggs ont he beach!

I hope you and your family all have a Happy Easter! Thank you from the bottom of my heart for checking up on Scotty.

Hugs,
Kim

Friday, March 30, 2007 1:59 PM CDT

Hi Everyone

Scotty's infusion went great yesterday.....I gave him 2 doses of Claritin yesterday morning prior to the infusion rather than one that we have been doing....seemed to work great. Of course we'll never know if that was really the issue but we'll try it this way for a while. The Day Hospital Pharmacist who was back from vacation said it really couldn't be how the Elaprased was mixed because there isn't much to mixing it to cause what happened.... The Allergist had originally asked that we go ahead and put Scotty back on a steroid as a premed YIKES .....
so I just asked her if we could try the double dose of Claritin before getting back into the steroids as a
pre- med. After just the few meds Scotty got last week for the reaction he had some gas issues all the way into the following Monday. So I'd like to try and avoid the Steroids.

Now for what did happen yesterday....Scotty has a couple sores on his nose...basically from us wipping his nose...not so much from it being runny but from trying to keep it moist with saline and whipping the excess saline. We were trying to keep it most so we could get the dry (sorry)boogies out of it. The nurse thought maybe it was a cold sore or something that may affect his immune system and was concerned with us doing the treatment. We (me and 3 nurses) were actually holding him getting ready for the stick when his nurse decided to go ahead and contact his doctor about the sores...... The Genetics Nurse and another Dr. came over around 20-30 minutes later and asked me questions, checked Scotty out and even took some pictures. They were going back to the office to talk with Scotty's Dr who hadn't made it into the office yet...they all had just flown in the night before from a week long conference.... in the meantime they told me that someone from the ID Dept(Infectious Disease)would be coming by. The nurses did get the go ahead to start Scotty with his treatment and he was fast asleep shortly afterwards. A Dr. from ID came in and checked him out & asked me questions and said she'd be back with a couple more ID Doctors in about a hour. They did come back about 1.5 hours later and 2 just came in. Thank Goodness the Dr. I hadn't met said she wouldn't ask questions because she knows I've been asked them many times already.. They felt it could possibibly be a skin infection of some kind but they could see that it was definitely healing. I told her we'd been keeping them clean and keeping some ointment on them. She just asked if I would mind if they (or I) would do a swab and they would have it cultured which wasn't a problem. After they left one of the Day Hospital nurses brought in the swab for me and I went ahead and did the nose swab. They are suppose to call me with the results.
Scotty's Geneticist came by in the afternoon and said what is all the fuss about????????? so he looked at Scotty man and he said it just looks where we were whipping may of got infected but again looked like it was healing great...
I know the nurses are just concerned any time his immune system can be compromised because of his reaction history and I appreciate it.
I was pretty sure we were still under the oders of no obsercvation so when Scotty was finishing up with his flush I asked the nurse...no observation time right?????? and I could tell by her response she really wasn't happy with that so another nurse came in the room a few minutes later and said even though there is a no observation we would really sleep better tonight if Scotty stuck around for just an extra 30 minutes. I just thought if I leave now I am in the middle of rush our so sure I'd stay so they could sleep better tonight. :) I took a picture of Michelle who is the nurse who started a few months ago that is originally from South Africa...we just love her (as we do all of them).. and she is so sweet to Scotty. She even made the comment that Scotty was one of the reasons she accepted the job at that hospital..if you remember she did her job interview on one of Scotty's infusion days..I gave her Scotty's website address in case we didn't see her again. She said she had even visited it a few times after her interview day and before she started permanently.

Today I had a meeting with Scotty's teacher and the Special Ed. Program Mgr. Basically we were just amending Scotty's IEP... I have this rule that I don't sign the IEP at the IEP meetings. I like to take them home and read through them completely. I wasn't in complete agreement with everything so I finally sent in my typed letter covering I agree with the IEP except the following... I had 2 pages of those...and that is what we covered today.. It all went good. I requested an OT/PT assessment because they had dropped him a couple of years ago but he was still getting it from a different Agency but they now have put him on a "consult only" status. School didn't want to do it and felt with the very strong letters that I presented them from his Doctors that we should have our private insurance provide it since it was so strong recommended...well that kind of defeats his FAPE (free and Appropriate Education). Scotty needs fine motor skills to obtain some of his IEP goals so .....I know the laws... All in all school is going well. I learned today that his new 1:1 is planning on following him next year to his new school which is good to know. That was something I asked today because if she wasn't I wanted to know when they'd be posting for that position. Now I don't have to worry about it.
I know this is long.....sorry.
I hope everyone had a great weekend and will have a GREATER WEEKEND.

Thank you for checking in on Scotty.
Big hugs for all of you.
Kim

Friday, March 23, 2007 12:37 AM CDT

Happy Friday Everyone!

Scotty did great yesterday during treatment with the exception of waking up from a nap (yes again) and starting to shake a little, and his hands starting to turn blochy purple. They stopped the infusion gave him some meds and he was fine. The last time this happened I think about 3 weeks ago he was actually lathargic for a while but not this time..maybe I caught it even sooner. I don't even think he was awake yet but I could see him starting to shake a little. They did page his Genetics Dr. who has to come over from across the street where his office is...by the time he got there Scotty was already laughing and flirting with a new nurse! The Doctor was relieved to see this obviously as were we. When Scotty's Doctor got back to his office he emailed Scotty's Allergist who is really involved with Scotty's meds for his treatment to let her know what was happening. I got cc:'d on her reply to him that this is really strange and she wondered if there was someone new mixing his drug? now the stranger part is yesterday the nurse told me that the normal pharmacist has been gone for 3 weeks on vacation! I emailed the allergist back to let her know this so maybe she is on to something.
I'll keep you updated when I hear anything. I know I have said it before but we are blessed to have such wonderful, caring nurses. They just love Scotty so much. I'm trying to get all of their pictures with Scotty so I can put it in his slide show.

When we arrived yesterdy morning I noticed one of his nurses hadn't been there the last couple of weeks so I asked where she was and they told me she had taken a position with the Bone Marrow Dept...Educating families who are getting ready for a transplant. I was so bummed we just loved Lisa. Mary the Charge Nurse said they hated to see her go but the good thing is she is still in the hospital. She said she would text her and let her know I was asking about her so later on that day here comes Lisa to visit! We were so excited to see and visit with her. I told her next time Tom comes with me to treatment I will let her know then we can have lunch together while Tom stays with Scotty. Of course she knows where we'll be every Thursday so hopefully she'll drop in often. Next month Scotty and I have to stay the night over there for some Dr. appointments the day before treatment so we may try to get together then.
Scotty is still sleeping! It is 10:50 am. I know I got up at 4:00 am to get him a drink then daddy went into the living room with him so I'm not sure what time he went back to sleep. I emailed his teacher that I would let him sleep as long as he needed since yesterday was such a long day for him (didn't get home until 10:45pm)and when he wakes up I would take him to school..
Not sure what we are doing this weekend...we are suppose to go out of town but I'm not sure how Scotty is feeling yet! If we don't go we will be going to our little friend Hunter's birthday party. I'm sure that will be fun.
I hope you all have a wonderful weekend. Thank you all so much for taking the time to check up on Scotty. We really appreciate it and I mean that from the bottom of my heart.
Hugs,
Kim

Friday, March 19, 2007 3:32 PM CDT

Hi Everyone

Hope you all had a great weekend! Ours was nice..on Saturday we went over to my sister's house and had corned beef and cabbage. It was really good. Unfortunately we couldn't stay too long because Tom had to go to work. But it was a nice visit.
On Sunday Scotty and I drove to Stockton to have lunch with our friends
Alicia, John, Ciara and Hunter(another MPS family). It was great to see them! We had a nice visit during lunch and then we all headed over to Costco for a quick shopping trip before Scotty and I headed home. Scotty got to hang out with daddy for a while that afternoon while I went to the movies with a friend.
Scotty is doing great....still has a tiny bit of a cough but other than that he's fine. Today was his first day with his new 1:1 Aid at school.
She was a regular Aid in his class and just moved over to be his 1:1 after his previous Aid Sonjay took another assignment at a different school. Scotty really liked him and I'm sure he'll miss him. Good Luck Sanjay :)

I emailed Scotty's Geneticist today and asked him if we were at the point where we could bypass the observation time after Scotty's treatment. I know it's only 30 minutes but when you have 1.5-2.5 hour(depending on traffic) drive to get home 30 minutes is a long time. Of course I told him I could understand us needing to stay if there was something that occurred during treatment (redness etc.) He emailed back saying it sounded reasonable given the amount of treatments Scotty has had. YIPPEE!

Have a wonderful week.
Hugs,
Kim

Monday, March 12, 2007 4:08 PM CDT

Hi Everyone

I thought I'd give you a little update on Scotty since he has been sick. We stayed home all weekend with a runny nose and a cough. Last night he was sounding better but we weren't sure whether we'd be sending him to school today? I thought I would decide that in the morning but Scotty man answered that question for me when he did not wake up until 11:15a.m! Even if I took the time change into factor it would be 10:15a.m. which is very late for my little early bird. He wanted to take a bath as soon as
he got up and sat in there for about an hour.

He does sound better and the runny nose has seemed to of stopped just a little bit of a cough. Obviously he needed his rest this morning and that is why I let him sleep.
Maybe he'll be ready for school tomorrow.
Thanks for checking up on him. Hope you all had a great weekend.
Hugs,
Kim

Friday, March 9, 2007

UPDATE***
This morning I took Scotty to see his Pediatrician. They listened to his lungs and said they said great!
All his congestion is in his sinuses which I now think may be due to Allergies and the sudden weather change. Last week we hit 83 degrees and sometimes a sudden change in weather has bothered Scotty. So we will treat him with some flonase and hopefully get him all cleared up.
I hope you all have a wonderful weekend.
Hugs,
Kim & Scotty

Thursday, March 8, 2007
Hi Everyone

I thought I would let you know early that Scotty has a cold so we decided not to do treatment today. He has been
coughing and last night he had a fever of 101.5 and a runny
nose (clear but runny). He's still his happy self but
again we don't want to take any chances. All the kids whether cancer patients, BMT etc.. get their treatments there so we don't want to expose them to Scotty's germs either.
Thank you for checking up on our Scotty man. I'm sure he'll be better soon.
Hugs,
Kim

Friday, March 2, 2007 9:32 AM CST

Happy Friday Friends!

Scotty's treatment went great yesterday.....Much to my surprise the orders still said we could go up to a max rate of 40 which hasn't happened since last October.
Scotty sailed through and we were done before 5:00 (pulled out of parking lot about 5:25. The bad part of that again is we were leaving smack in the middle of Bay Area commuter traffic. There was traffic but it was all moving quickly so we were home a little after 7:00pm. I even let Scotty watch his DVD player on the way home knowing that the drive was going to be long but it wasn't.

When we arrived at the hospital and got settled in our rooms the charge nurse told me that the family in the room next door also had a Hunter boy who just finished his treatment and wanted to know if we wanted to meet them of course I said yes. I had heard he had been getting treatments there but it was not the ERT.....he had a BMT last November so he was doing his follow up treatment. I was very surprised that he had a BMT because they just don't do that often with Hunter boys but when I heard his age I was really surprised...he had the BMT at 5 years old!!!!!!!! His name is Spencer and he is as cute as can be. He is doing great. I took some pictures and I hope to get them posted as soon as I get back from taking Scotty man to school so check back later today and hopefully they'll be there.
Thank You for checking in on Scotty.
Love
Kim

Thursday, February 22, 2007 6:39 PM CST

Hi

I got good news yesterday that Scotty's Genetics Dr. was finally willing to bump up Scotty's infusion rate!!!!!
Our max rate in the beginning was 40....after Scotty's first reaction we went back down to a max rate of 28 and have stayed there.
Today when we checked in and they were hooking Scotty up I looked at the label on his syringe and it still said 28 max so I was a little bummed out. I emailed Scotty's Dr. who's office is across the street from the Day Hospital and asked him when would he be implementing the higher rate, he said that he already had...that the new orders he sent in were to be effective immediately so I asked the nurses and they looked at the orders they received yesterday and sure enough it said max rate of 40. So we were excited to finally go beyond 28 but Scotty had different plans!

Scotty was taking his usual nap during treatment and when he woke up I noticed that he just wasn't his normal happy self. I changed his diaper and noticed that he was starting to tremble a little like he was cold, his hands, feet and nail beds looked purple and his lips were starting to quiver! YIKES this is exactly what happened with his first reaction. I got the nurse who immediately stopped the infusion. She looked at Scotty and saw he definitely wasn't himself, they called his Dr. who came over ...as well as his nurse. She said she was on the phone as he was walking out and he mouthed to her that Scotty was having a reaction and he was coming to see him, of course she got off the phone right away and was right behind him. In the meantime they had given him some benadryl and hydrocortisone which you could see was working immediately. His temperature went up and his face became a little puffy. When his Dr. arrived he examined him thoroughly and couldn't see anything wrong but could see he was lathargic. They asked if he had been sick recently or if Tom or I had been sick? I said no. Scotty has had one treatment since he was sick so that couldn't of been it. We still aren't sure what happened but they resumed the infusion at 3:30 back down to the starting rate of 4. It is now 5:15 and we haven't even started the second syringe so who knows what time we'll be done. I guess it really doesn't matter as long as Scotty is alright which he is. The nurses are so happy to hear him laughing...back to his usual Scotty self. We really are so lucky and blessed to have the greatest nurses at the Day Hospital! They are awesome.

Our 30 minute observation time started around 8:15 and I noticed Scotty started scratching at his nose which made me realize that he did that also this afternoon when he was waking up from his nap. So just to be safe I asked the nurse if they could give Scotty another dose of Benadryl which she did. His face was a little red when we left but he was fine....
I was hoping he would fall asleep but nope he was wide awake all the way home. Traffic wasn't too bad so we made it home in about 1.5 hours.
Scotty is doing fine and I'm still not sure what happened today ...but I'm glad we were able to catch it before it got worse.
Thank you all for checking up on Scotty man.
Hugs,
Kim

Thursday, February 22, 2007 6:39 PM CST

Hi

I got good news yesterday that Scotty's Genetics Dr. was finally willing to bump up Scotty's infusion rate!!!!!
Our max rate in the beginning was 40....after Scotty's first reaction we went back down to a max rate of 28 and have stayed there.
Today when we checked in and they were hooking Scotty up I looked at the label on his syringe and it still said 28 max so I was a little bummed out. I emailed Scotty's Dr. who's office is across the street from the Day Hospital and asked him when would he be implementing the higher rate, he said that he already had...that the new orders he sent in were to be effective immediately so I asked the nurses and they looked at the orders they received yesterday and sure enough it said max rate of 40. We were all excited. Good thing I checked.

Scotty was taking his usual nap during treatment and when he woke up I noticed that he just wasn't his normal happy self. I changed his diaper and noticed that he was starting to tremble a little like he was cold, his hands, feet and nail beds looked purple and his lips were starting to quiver! YIKES this is exactly what happened with his first reaction. I got the nurse who immediately stopped the infusion. She looked at Scotty and saw he definitely wasn't himself, they called his Dr. who came over ...as well as his nurse. She said she was on the phone as he was walking out and he mouthed to her that Scotty was having a reaction and he was coming to see him, of course she got off the phone right away and was right behind him. In the meantime they had given him some benadryl and hydrocortisone which you could see was working immediately. His temperature went up and his face became a little puffy. When his Dr. arrived he examined him thoroughly and couldn't see anything wrong but could see he was lathargic. They asked if he had been sick recently or if Tom or I had been sick? I said no. Scotty has had one treatment since he was sick so that couldn't of been it. We still aren't sure what happened but they resumed the infusion at 3:30 back down to the starting rate of 4. It is now 5:15 and we haven't even started the second syringe so who knows what time we'll be done. I guess it really doesn't matter as long as Scotty is alright which he is. The nurses are so happy to hear him laughing...back to his usual Scotty self.
I'll update when I get home if it's not too late.

Thursday, February 15, 2007 11:41 PM CST

Hi Friends

Once again I just wanted to let you all know how much it means to us that you continue to check up on Scotty. Please please know that even though I haven't been signing your guestbooks I am visiting your websites. As much as I would love to say I've resolved all the issues that have kept me so busy(& exhausted)these last couple of months..unfortuntely I can't. With Scotty being home sick last week it just kind of threw me off some more... I was so out of touch with what day it was because Scotty and I hung out at home for 10 days or so that the actual date wasn't a priority but should of been! I drove Scotty to school last Monday morning (which is across town) only to find absolutely nobody there? It took me a few minutes to realize it was a school holiday! Grrrrrrrrrrr.....so little Scotty man & I went shopping instead. Well at least as much as we could get in before Scotty went potty! I kept telling myself in the store that he is just making grunting sounds to be silly but I knew the truth and so would the rest of the store if I didn't hurry up and check out!

Scotty's treatment went great today. It was so nice and quite when we arrived at the Day Hospital. I don't know where everyone was at but I thought to myself oh peace & quite today NOT....soon as we got settled into our room the construction noise which consisted of pounding and drilling began and it didn't end until late afternoon! OMG...it was so noisy, then there was a little baby next room over crying and crying......what smart move did I make next????????? I let Scotty watch his favorite movie.......Mary Poppins. Do you know how many songs there are in that movie.......I haven't liked Mary for a very long time and today I hated her. I still have spoon full of sugar playing in my mind. YIKES Scotty loves Mary and I guess that's what counts. I think today was the earliest we have left in a long time. We were done with everything at 5:30 so it was around 5:50 when we left. THIS WAS NOT GOOD. We got home at 8:30...the commuter traffic was terrible. We were about 8-10 miles away from home on a very dark highway with no services and Scotty started sneezing, rubbing his nose and spitting up. I couldn't tell if he was having breathing problems or what. It was dark outside but he likes to have the dome light on to look at his books so I could see him. After a couple of minutes he stopped, I'm still not quite sure what brought that on but he seems to be fine. We'll just have to watch him closely. He feel asleep tonight about 9:30.
I'm going to finish this update tomorrow so I can get to bed at a decent hour tonight.
Hugs to you all
Kim

Sunday, February 11, 2007 6:13 AM CST

Hi Everyone

My little man is on the road to recovery. He still has a little bit of a cough but it's getting better. Poor little guy had been house bound for a week with the exception of 2 Doctor appointments so I decided to take him out for a little spin in his bike trailer today. It was nice to get some fresh air! We were out for about 30-40 minutes then the sky was getting a little too dark so we headed back home just in time before the big rain storm.
Not much more going on....I finally have Scotty's IEP meeting on Wednesday which I'm looking forward to. It will be nice to finally get these issues addressed and hopefully resolved! Keep your fingers crossed for me.
Hugs,

Wednesday, February 7, 2007 10:22 PM CST

Hi Everyone

Well our little Scotty man has been sick since last Saturday. We noticed a little cough coming on Saturday so we stayed close to home all weekend and kept him inside hoping that the cough would go away but no such luck. He had a little bit of a fever by Monday that we were able to keep down with some motrin but the cough unfortunately got worse. We started giving him breathing treatments which seemed to help but today I decided to take him to the Doctor to make sure there wasn't anything worse going on that I couldn't see which there really wasn't. His pediatrician did say that the drainage in his ear was a little green and decided to put him on some antibiotics. We did give him a breathing treatment there at the Doctors office and she was able to listen to him before and after which he sounded much better after so we'll continue with the breathing treatments as needed. We do have to go back tomorrow for a follow up visit. I talked with our Genetics Nurse tonight who paged Scotty's Genetics Dr. and they both felt it would be best to skip tomorrow's treatment. I hate to miss a treatment but better safe than sorry, especially since the last one effected his breathing (or lack of!). We'll get him nice and strong for next weeks treatment.
Well I'm going to go give Scotty a treatment now before bed. Thank you so much for checking in on him. I don't know what I'd do without all of you.
I hope everyone is doing well. I know the East Coast has been hit with the big snow storms.....I guess winter is finally here. I hope you all stay safe, warm and healthy.
Hugs and Much Love to you all
Kim & Scotty

Wednesday, February 7, 2007 10:22 PM CST

Friday, February 2, 2007 5:36 PM CST

Hello Everyone :)

Thank you to all of my wonderful friends for checking in on Scotty and I..... I know I have been MIA lately and I'm sorry. I'm still working on school issues and haven't been able to get anything resolved because we haven't been able to coordinate everyone's schedule for a meeting. Of course this is getting a bit frustrating since I began voicing my concerns almost a month ago..... I could write forever here about my issues with Scotty's class but won't because you never know who's visiting his website. I'll keep you updated when we have our meeting.

Scotty's treatment went great yesterday. It was a bit crazy at the day hospital because they had 3 of their regular Thursday nursing staff out but Scotty's nurse was there which made it nice. He was laughing all day yesterday and cracking everyone up. IV access was pretty easy after soaking his feet in really warm water. We didn't even use a patch. The initial poke bugs him but he's fine after that. I just got to keep the cheerios or apple jacks coming.

There was a bit of good news last Friday. Scotty's caseworker for IHSS (In Home Supportive Services, the program where they pay me a certain amount of hours per month to be his caregiver) came over to update his file. Previously they could not take into consideration any time that Tom was also home. They could only calculate my hours while Scotty & I were here by ourselves. This became very difficult because Tom works every other week and he alternates shifts (day & night) every other week when he does work. For instance on the day shift he works 6am to 6pm for 7 straight days, 5 of those days Scotty's in school so by the time he gets home around 3:30 they could only do their calculations for the hours of 3:30 to 6:30 when Tom got home. They don't give you 3 hours they have this whole formula.. maybe during those 3 hours you feed him which they give you 20 minutes and change his diaper once 4.5 minutes...that's how it works.
The good news is now they will pay me when Tom is home! I don't know how many more hours it will be but I was excited because the state is usually taking things away and here they were giving back time. Yippee.

I hope you all are doing well. My plan is to lay off the Special Education books this weekend and check up on all of our wonderful friends.
Have a great weekend.
Love you all,
Kim & Scotty

Friday, January 26, 2007 12:28 AM CST

Hi Everyone and Happy Happy Friday!

Sorry I didn't get here sooner to let you know how Scotty's ERT went yesterday. I usually try to update that night because I know we have a lot of East Coast friends who check up on him early Friday morning.
Everything went great yesterday! Scotty was so good as always. The Charge nurse told me yesterday that as much as they hate that Scotty has this illness they really look forward to Thursdays because it's his treatment day and they love to see him. She said no matter how bad the day is they can always hear Scotty cracking himself up in his room and that just makes their day so much better :)

As for the last 2 weeks of my life they have just been hectic. I know I mentioned we were having school issues again and today we were scheduled to have a meeting but only "informal" and not an IEP Meeting which I had requested. So I hand delivered a letter to the school today that stated an informal meeting was unacceptable due to the serious nature of my concerns and Scotty's IEP so we needed to schedule an IEP meeting. I also stated that I felt Scotty's Safety was being jeopardized and I would keep him at home until this was resolved. My issue is Scotty is suppose to have a one on one Aid ....and now he's just being passed around to the 3 that are there and any sub aids who know nothing about Scotty's medical issues.

It just never ends......I have another Agency coming to our house today about an issue I have been questioning them about for the last month. And I have a "Mediation" date on Feb. 14th with our Regioanl Center for denied services that I am appealing. When it rains it pours :(
I guess I know why I am so tired. The funny thing is I am a very non confrontational person but you wouldn't think that with all these issues going on right now. Sometimes I want to throw in the towel then I look at Scotty and say no way. I'm fighting till the end!

Thank you all for checking in on Scotty man.
Have a Great Weekend!
Kim

Friday, January 26, 2007 12:28 AM CST

Thursday, January 18, 2007 3:08 PM CST

Hi Everyone

I'm extemely happy to report that everything went great with Scotty's ERT today! I guess the daily dose of Claritin that Scotty is taking is doing the trick...YIPPEE More importantly I'm just happy that little Scotty man is off all those medications. I'm not going to say anything else because I don't want to jinx myself. I'm just thankful that we can finally move forward. Hopefully we'll work on bumping up the infusion rate next :) We did have a great surprise when we arrived at the Day Hospital yesterday..they had hired a new nurse that we had met a couple of months ago when she was interviewing for the position by shadowing a nurse who already worked there. Michelle was so sweet and loved Scotty so much even though she had just met him (as I'm sure she is with all her patients) she was very interested about MPS II and asked many questions about it. I think I may have even mentioned her that day in my journal. She is from South Africa and has this strong accent and is as nice as can be so is was great to see her when we checked in. She was excited about seeing Scotty and even said she had gone on to his website to check up on him. We are so blessed to have a Day Hospital full of such kind and caring nurses, I just can't say enough about any of them. You know when you're there all day long one day a week you really get to know them.

I've got to make some phone calls tomorrow and see where we are are on the Port. Hopefully we will see the ENT there at Stanford soon so they can do an evaluation on Scotty's airway and then we'll know how we'll have to proceed with the sedation issue.

Unfortunately I'm having school issues again. Last week I went and observed Scotty's class on recess then visited the class when they went back in and I just wasn't happy with what I saw outside or inside. Now I am playing phone tag with the school Principal who wants to have an informal meeting. I don't think an informal meeting is going to work, I need a full blown IEP meeting. I fought very hard to get Scotty a 1 on 1 Aid and that is not how this person is being used. It's so frustrating and sad what special needs parents have to go through. :(

Other than my issues with school not a whole lot has gone on in the last week. We stayed home for the long weekend because it was Tom's weekend to work. Scotty & I took a couple nice bike rides....well I biked and he rode in his bike trailer. Talk about a work out! Scotty's 70 pounds the bike trailer is about 30 pounds, let me tell you I won't be riding him up any hills any time soon.....flat flat land only.

Thank you for checking up on Scotty. We love our Caringbridge family! You all are very special to us.
Hugs,
Kim & Scotty

Thursday, January 18, 2007 3:08 PM CST

Hi Everyone

I'm happy to report that everything is going great with Scotty's treatment right now. Tami hit a vein in Scotty's foot on her first try and we were able to start at 11:30. Scotty has already taken his 1 hour power nap and now is watching a movie. Hopefully the rest of our day will be as uneventful!

Unfortunately I'm having school issues again. Last week I went and observed Scotty's class on recess then visited the class when they went back in and I just wasn't happy with what I saw outside or inside. Now I am playing phone tag with the school Principal who wants to have an informal meeting. I don't think an informal meeting is going to work, I need a full blown IEP meeting. I fought very hard to get Scotty a 1 on 1 Aid and that is not how this person is being used. It's so frustrating and sad what special needs parents have to go through. :(

Other than my issues with school not a whole lot has gone on in the last week. We stayed home for the long weekend because it was Tom's weekend to work. Scotty & I took a couple nice bike rides....well I biked and he rode in his bike trailer. Talk about a work out! Scotty's 70 pounds the bike trailer is about 30 pounds, let me tell you I won't be riding him up any hills any time soon.....flat flat land only.

Thank you for checking up on Scotty. We love our Caringbridge family! You all are very special to us.
Hugs,
Kim & Scotty

Thursday, January 11, 2007 5:40 PM CST

Hi Everyone

I knew today was going to be a very strange day when I went to wake up Scotty this morning and he was sleeping sideways in his bed! I have never seen him sleep like this in his bed before.......and this is exactly how our day started off SIDEWAYS!

Our commute in to the hospital this morning was really weird ...stop and go ...stop and go....it hasn't been like this for at least a month, I mean commuter traffic is always commuter traffic but at least it has been moving even if slowly...today it was back to stop and go ...stop and go.

We arrived at the Day hospital on time and the nurse was pretty quick to come out and say Scotty's room was ready if we wanted to go in and get settled then she'd also look to see where she'd put the patch....I said I was hoping to grab some coffee during the 3o minute wait after the patch is put on so we decided that she'd just put the patch on while we were there in the waiting room otherwise I wouldn't be able to get Scotty to leave again to go get my coffee! It took about 20 minutes for her to find a vein to put the patch on then we headed out to the cafeteria to grab some coffee. When we got back we went into our room and they did all of Scotty's vitals.
The patch is good for 30 minutes which is about the time Scotty's other nurse Tami gets in to work so it usually works out pretty well because she is the one who pokes him...today she came in and we talked for a bit then she got really busy so we kept waiting and waiting thinking she'd be back in soon. While waiting for her I had noticed quite a few people around the nurses station....they all looked very professional and definitely were there for a reason (i.e. maybe drug reps or something like that). At one time the charge nurse actually closed our sliding door to Scotty's room so I thought the visitors must be there to talk about a patient and didn't want others over hearing? At this point I was trying my hardest to keep Scotty awake because he was so tired and kept dosing off which I didn't want to happen because we still didn't have the iv in and I didn't want to wake him from a nap to stick him...this wouldn't of been a good thing. Now it is getting around noon time (we get there at 9:30) and still nothing I'm thinking man the Pharmacy must be really backed up which now that I think about it that wouldn't make sense because they don't even mix his drug until they have IV access and no ones trying!
Finally our door opens and in come all the people who were at the nurses station all morning! A man introduces himself as the Mgr of the hospital's Pharmacies (they have 5) and says there's a problem... they know for certain that Scotty's drug was delivered the day before like always but they are having a little trouble (well I guess a lot of trouble)locating it now! In plain english ....IT'S BEEN LOST!
At this time I recognized one of the women in the group as a very nice lady that I met a couple of weeks ago when she stopped by Scotty's room during treatment. She is head of Patient Relations who I had dealt with previously when I was having issues with them transporting Scotty out...(which we got resolved by the way).
I'm sure they all thought I was going to go balistic when they told me... maybe that is why there were so many of them (SAFETY IN NUMBERS). He very nicely explained what happend said how sorry they were numerous times. He also said that Oakland's Childrens Hospital was kind enough to give them Scotty's drug (THANK YOU OAKLAND CHILDREN'S HOSP.) and there was already a courier on it's way over to the Hospital to pick it up and that by the time they get it back to us it would be approx. 2:00 pm. They presented some options as to what I might want to do. I don't know if you remembered but todays treatment was going to be our first with out all those premeds so everyone was a little concerned about that and starting later in the day meaning also I would be there late. They offered to put us up that night in a hotel if we wanted to do the treatment the next day or even if we preceeded with today and I was too tired to drive home we could stay. I told them I understand things happen and I was really not upset at all I mean what could I do????? If this was the worst thing to happen today then I was happy. I said I was fine with starting late because I have driven home late more times than I care to remember but would think about staying if I got too tired as the day went on. (I went to bed this morning at 1:00 am and my alarm went off at 5:00 am so I was already tired).

The drug arrived around 1:30 it was at this same time well actually we started about 1:00 Scotty's IV access Today had to of been the worst day for IV access....poor little Scotty man. I felt bad today because he was REALLY MAD....he kept crying for DADDY! I know he's mad when he wants Daddy. They got the IV in after 3 pokes then Scotty was back to his happy self.
I have to say after that we just sailed through....SCOTTY COMPLETELY AND TOTALLY CRACKED HIMSELF UP WATCHING HIS MOVIES TODAY!
He was just plain silly and had everyone laughing with him!
Tami his nurse said to me after everything calmed down how sorry she was that she couldn't say anything to me earlier when she knew the drug was lost but her supervisor wanted all those people present when they told me so she couldn't say anything.

The great news is SCOTTY WAS FINE and he only had one dose of Claritin at 8:30 am. I knew he'd be fine with out the meds!
I have to say that even though the day was long it went by pretty quick because I had many visitors today to occupy the time...
I think I mentioned last week that the hospital wanted to do a story on Scotty and the ERT so the Manager from the Hospital's Media Relations Dept came in for a while to meet Scotty. I guess they would put a article in their hospital paper then he also talks with local reporters and cable stations to see if they want to also do a story.
I had a lady from the Diet Services come in because we are trying to get some other food options for Scotty for lunch and dinner. He is such a picky eatter they are really trying to help come up with some other food choices for him besides what is on the menu we choose off of. Pumpkin Seed the rabbit and her owner Laurie stopped by for a nice visit. I was the one who needed pet therapy today! Scotty's Genetics Nurse Vicki stopped by around 6:30 tonight, it's always great to see her.

Overall it was a great day today, yes there was the small issue of the lost drug but Scotty did great and that's all that matters in the end.

I DO HAVE TO TELL YOU THAT I AM HAPPY TO SAY THAT ELAPRASE WAS APPROVED TODAY IN THE UK!!!!!!!!!!!!!
We have friends in England and the Netherlands who have been waiting patiently for the approval and they got it today! I will post a link to their websites tomorrow so you can read about them and their new journey that they will begin shortly. We are so excited for them.
This is such awesome news for everyone!

It's been a long day and I'm sure I'm forgetting to tell you something but I will remember it tomorrow. Scotty was pretty wired driving home...in fact my sister called me on my cell phone to check up on us aroud 10:15 and she could hear Scotty laughing...she said someone's going to be up late tonight ...yep I told her Scotty was wired for sound but lucky for me daddy was taking over the night shift when I got home and would be up late with him....15 minutes later Scotty was out like a light! He was still asleep when we arrived home but needed to be changed so he woke up for a short time. He and Tom are both now in bed sleeping and snoring and where am I? AWAKE!

I'll go to bed shortly....just taking a moment to relax and think about today and how lucky we are to have such a wonderful Day Hospital for Scotty's infusions full of AWESOME NURSES that we just love and who really just adore Scotty.

Thank you all for stopping by and checking up on Scotty man. We love you all.
Hugs and Goodnight
Kim

Thursday, January 11, 2007 5:40 PM CST

Hi Everyone

I knew today was going to be a very strange day when I went to wake up Scotty this morning and he was sleeping sideways in his bed! I have never seen him sleep like this in his bed before.......and this is exactly how our day has gone SIDEWAYS! AND...........we haven't even started the Elaprase and it's almost 2:00!

OMG if I smoked right now I would take a break and go outside and have a puff or two! Our traffic this morning was terrible! We got here safe and sound got into our room got the patch on at 9:50 am and there it sit for an hour! 30 minutes too long.......then we kept waiting...and waiting....I saw a bunch of people in suits and dresses up at the nurses station talking for quite a while this morning so I thought they had visitors and that the pharmacy was really backed up............
until the business people people walked into Scotty's room! A man who introduced himself as the Pharmacy Mgr (of all 5 pharmacies here in hosp) began with
"We have a problem"
He said the Elaprase was delivered yesterday BUT THEY CAN NOT FIND IT RIGHT NOW It is somewhere in the hospital but they just didn't know where! He said there is a courier on it's way over to Oakland Children's Hospital to get some Elaprase from them and once back we'd be starting around 2:00p.m. We went over all of our options because remember no premeds except Claritin today so everyone is also kind of worried about that and very concerned for me and the time we'd be finishing (with no problems hopefully).
They of course offered housing tonight, lunch, dinner whatever we wanted ....I said I didn't have a problem starting late because I have been here much later than that but staying is still an open option .. I did go to bed this morning at 1:00 am and got up at 5:00 so I am a little tired we'll see what happens.
I said I will do whatever Scotty's Dr. says............so I will keep you all posted. OH I FORGOT TO MENTION TODAY WAS THE HARDEST DAY FOR IV ACCESS ALSO! Poor little Scotty man! They should of still started access earlier as Scotty's nurse had suggested because what she predicted happened and that was the Elaprase arrived and we were having a hard time with access

I don't blame them....stuff happens... when they all came in I think they thought I was going to lose it.......they don't know I am non-confrontational in person. Really if this is the worst thing that happens today than I will be fine!

Well we did start the Elaprase at 2:15 so I'm ready for a long night....I'd like to say I'd take a nap with Scotty because he is also very tired but with the change in Meds I really need to stay awake and watch him closely.

Hugs to you all and thanks for checking up on Scotty man.
Kim

Thursday, January 4, 2007 8:15 PM CST

Hi Everyone & Happy Friday!

Well Scotty's treatment went flawless yesterday! We were done and driving out of the parking lot by 6:00 pm. I know this sounds late to a lot of you but for me this is the earliest we have left since Scotty had his first reaction in October! Even with the drive home which was weird because there was commuter traffic and every other kind of traffic we still made it home by 8:00 pm.
It did take the nurses a while to find what vein they were going to use but they were actually able to use the vein they put the numbing/heating patch on. Nurse Tami hit it with one poke. Yippeeeee
I know I always say it but Scotty is always so good when they are sticking him. Usually we do it with him still sitting in his chair but for the second week we just did it while he was in the bed. He did get one kick in but Tami was so quick that we didn't need to restrain him very long at all. By restrain I mean me holding his legs which obviously I didn't too good of a job doing but that was because I was too busy distracting him with his Apple Jacks! This is always a must. I know I have also told you this before but if you are still having issues with removing the tape for the IV the answer is BABY OIL! It works like a charm. I start soaking Scotty's tape about 15 minutes before the flush is done and it's ready to just peel off when the flush is finished.
After speaking with Scotty's Geneticist and the Allergy Dr. they have decided to take Scotty off all the pre meds, meds and post meds except the Claritin. Claritin will be Scotty's only pre med. About a month ago during Scotty's treatment they waited specifically to take a blood sample from Scotty when the "redness" on his face appeared. Well the results showed that Scotty is not having any reaction to the ERT drug at all which is great news. I personally always thought it was the Benadryl and that is why we switched to the Claritin. They knew I wasn't giving Scotty the post meds of the Steroid...I just couldn't do it. Had he had breathing issues than yes but he wasn't so I didn't! Daddy is very excited about no pre meds since he was the one giving Scotty the premeds the night before at 10 & 11PM and then the morning of at 4:00AM! Then he would package us up 3 bottles (he mixed premeds with a little juice) of the premeds that he needed 2 hrs, 1 hr and 30 minutes prior to infusion. So as you can see this was not an easy task! Not to mention the small fact that Scotty had to be in a good mood to drink all of this! You really can't make someone drink something! The hour before premeds were my choice because we were letting them do it in the IV but I wanted to save a hour.

Well I can't believe that it is that time of the year again but the 22nd National MPS Family Conference is March 4-6 in Washington DC! What is also great is the Scientific Conference sponsored by the NIH is the following 2 days 7-8th. The topic of this Conference is "Towards Clinical Progress in the Mucopolysaccharidoses" (MPS). I have never attended a Scientific Conference before but they say this is a must! They are awesome.
I just can't believe this is 2 months away. It will be here before we know it. We will also take some extra time to do some sight seeing in DC.

Thank you all from the bottom of my heart for checking in on Scotty man. He is the joy of our lives and it means so much to us that he is loved by so many of you. I just wish you could meet him! Tom has a new ipod that takes videos so I'll be taking some of Scotty then I will post them here for you to see!
Take Care and have a Great Weekend!
Many Many Hugs and Much Love to all of you.

Tuesday, January 2, 2007 1:41 PM CST

Hello Friends

I hope you all had a Safe and Happy New Years Eve.
Ours was very quiet, Tom was working the night shift and
my cute little date (Scotty man) fell asleep by 9:30 pm which in turn means we were both in bed asleep by 10:00 pm!

On New Years Day we took Scotty to see the movie Happy Feet....I was getting popcorn and him and daddy were suppose to be getting our seats then they appeared when I turned around with the popcorn..Tom said Scotty started crying when they went to walk in the show so we both took his hands and went back in with NO PROBLEM! I think it was the popcorn. Sometimes he gets kind of scared because of the loud noise but he seemed to enjoy the movie or at least whatever movie he may have been also watching in his little mind! He just was cracking up the whole time....eatting popcorn, crack up, eatting popcorn, crack up it was so funny to watch him. Oh I forgot to tell you that when we parked to go to the show we normally put Scotty in his stroller because it's a large parking garage and it's quite a walk to the show but this time we let him walk and he did great! He kept right up with us the whole time and not once did he look like he was tired or did he want one of us to carry him. Prior to ERT he would never of done this.
We went to the mall afterwards so I could return something and we did put him in his stroller this time but he had fun and of course we had to get him a Hot Dog on a Stick! It was a nice day. Scotty doesn't go back to school until next Monday so my plan is to get some bike riding in with him in his bike trailer.
We will be back on our regular schedule of ERT treatments on Thursday. I will also start this week working on getting his port surgery set up. My problem here is going to be also getting them to do an ABR hearing test which Scotty really needs. I would also like to get him tested for Carpel Tunnel but that may be asking for too much under one sedation.
I hope you all have a great week.
Many Hugs,

Sunday, December 31, 2006 10:52 AM CST

Thursday, December 28, 2006 0:22 AM CST

Hi Everyone

I hope you all had a Wonderful and Blessed Christmas.
We have had a great visit here in San Diego with my brother and his family unfortunately it's time to head home so we'll be leaving tomorrow morning. It is about a 7 hour drive.
Scotty had a great time visiting with his 3 cousins and Aunt & Uncle.... his cousins really do love him so much and it's so sweet to see them with him.
The weather has been absolutely wonderful while we've been here except some rain today. I think Christmas it was close to 80 degrees! I woke up that morning thinking I heard rain and was a little excited then I realized it was the sprinklers! :(

I have more to tell you about our trip and my friends that I got to finally meet in person but it's getting late and I need to pack so I'll update tomorrow when we get home.

Scotty's ERT will be this Friday instead of Thursday.

Hugs to you all
Kim

Thursday, December 28, 2006 0:22 AM CST

Monday, December 25, 2006 6:01 PM CST

Friday, December 22, 2006 7:01 AM CST

Happy Friday

Our little Scotty man had another great treatment yesterday! He just sailed right on through with no problems, no redness, no nothing. Boy it sure is nice to be saying that again.
The best part obviously of the day was Scotty having no kind of reaction but right behind it was OUR 30 MINUTE OBSERVATION TIME! NOT 2 HOURS.
We left the hospital by 6:30 and were home about 8:30!

I will finish up with my journal entry later on this evening after we arrive in San Diego but I just wanted to let you all know that Scotty did great. Thank you from the bottom of our hearts for following Scotty's treatments. I know it was with all your thoughts and prayers that his treatments are now going perfectly.
Many Hugs
Km

Friday, December 22, 2006 7:01 AM CST

Sunday, December 17, 2006 8:32 AM CST

Dear Family and Friends

Scotty has done great since treatment last Thursday. He looked like he was starting to walk a little funny last night like he does with gas but I gave him an extra dose of gas drops and that seemed to help. He's still sleeping but I'm pretty sure the gas issue is gone.
It's going to get pretty crazy around here the next few days since I only have till Wednesday to start/finish shopping, make a ton of Carmel Apples and get ready for our trip to San Diego because treatment day is all day Thursday and we leave first thing Friday morning.
I'm not quite sure what Santa's bringing Scotty man yet. I know nothing will make him more excited than spending Christmas with his favorite cousins in San Diego. Sarah is 1 year old and Ally is one year younger than Scotty and they love Scotty so much and take such good care of him when they are with him it's just so sweet to watch. The hardest part of visiting them is always leaving because I know they are one of the biggest joys of Scotty's life and it breaks my heart that he isn't able to see them all the time. I hate to leave them so I know how Scotty feels. I guess I need to remember that it could be worse and they could live in another state or country yikes!

I wanted to say "Thank You" to my friend Brenda who put the music on Scotty's website! She now knows how computer illiterate I really am!
Angels Among Us has always been on of my all time favorite songs.

THURSDAY 7:00 PM UPDATE:

GREAT NEWS!

Today was first time since Scotty's 1st reaction that his face did not turn red or even flush!

I guess the daily dose of Claritin is working! We only had to do one hour of
observation rather than 2 tonight! Things ran real late when we first arrived at the day hospital so even with only 1 hour observation we weren't leaving the parking lot until 8:15....but that's better than 9:15!

I forgot to update after returning from our trip last weekend to our friends. We had an absolutely wonderful time...our friends have 2 beautiful MPS III girls and they are the sweetest little girls ever. They had a party for their daughter and another special needs boy named Alec (who is just as sweet as the girls)and Alec had a bunch of his cousins there and I can not believe how good these kids were with all 4 special needs kids! They were completely attentive to everyone of them including Scotty who they didn't know. That party was definitely for the Special Needs kids and the other kids were making sure they had a good time. Our friends are so sweet that they got Scotty some wonderful gifts to open and even her parents who have never met Scotty gave him a gift cert. for Toys R Us! I can't even explain how amazing it was to be surrounded by this large group of people whose main focus was those children. It was awesome. Our friends surprised us with this huge gift basket just filled with everything that we love (especially the margarita fixings!)maybe I'll be a link so you can see what was in it tomorrow during treatment. I will keep you posted how tomorrow goes.

Please remember to keep all our MPS families and all our Caringbridge families in your prayers. There are so many of them going through so really tough times right now. I am going to even put some links so you can check in on them.

Tucker- All though Tuckers mom hasn't updated lately he has been in the hospital since last Monday with a severe case of Pneumonia. He just got out of ICU yesterday.

Makayla. They're expecting sweet Makayla to lose her tough fight with MPS I today. Please pray for her and her whole family.

Take Care and Be safe out there while you're finishing up you're Christmas shopping....there are some pretty crazy people out there!

Love and Many Hugs,
Kim

Thursday, December 14, 2006
THURSDAY 7:00 PM UPDATE:

GREAT NEWS!

Today was first time since Scotty's 1st reaction that his face did not turn red or even flush!

I guess the daily dose of Claritin is working!
Now if I can get out of a 2 hour observation life would be real good right now!
We are waiting for Scotty's Dr. to return the nurses page to see if we can maybe be observed for 1 hour instead. Keep your fingers crossed for us.

Hello Everyone

Good news to report.... Scotty made it through this week without any back/gas pains! So I am assuming the Gas drops that we are giving him daily are working! (That and the prune juice..lol) now just keep your fingers crossed that the Claritan that we are also giving him daily will keep Scotty's face from getting red tomorrow during treatment. I'm anxious to see what happens..I will definitely keep you posted.
I forgot to update after returning from our trip last weekend to our friends. We had an absolutely wonderful time...our friends have 2 beautiful MPS III girls and they are the sweetest little girls ever. They had a party for their daughter and another special needs boy named Alec (who is just as sweet as the girls)and Alec had a bunch of his cousins there and I can not believe how good these kids were with all 4 special needs kids! They were completely attentive to everyone of them including Scotty who they didn't know. That party was definitely for the Special Needs kids and the other kids were making sure they had a good time. Our friends are so sweet that they got Scotty some wonderful gifts to open and even her parents who have never met Scotty gave him a gift cert. for Toys R Us! I can't even explain how amazing it was to be surrounded by this large group of people whose main focus was those children. It was awesome. Our friends surprised us with this huge gift basket just filled with everything that we love (especially the margarita fixings!)maybe I'll be a link so you can see what was in it tomorrow during treatment. I will keep you posted how tomorrow goes.

Friday, December 8
Happy Friday Everyone!

Scotty's treatment went great yesterday and we actually left the hospital last night by 8:15 I was so excited! We were able to leave early because I had asked Vicki, Scotty's Genetics nurse last week if it was ok that I start doing the premeds that are required a hour before the infusion...for some reason we got in the habit of the nurses doing them by IV but I need to shave some time off our day and I knew I could get a hour here back....The ironic part is for the first time ever we had to wait for the Pharmacy to mix Scotty's Elaprase I guess they were really busy so that was an extra 30 or more minutes..but that was fine it wasn't a problem I just thought it was funny because that's how my life goes! It's really nice because the Day Hospital has their own little Pharmacy right there but because the ridiculously outrageous price of Scotty's drug they do not mix it until they have Scotty's IV in which is probably a good thing. For the first time Tami put the IV in Scotty's foot, we watched it closely because the vein was so small but Scotty's infusion rate is soooooo slow it wasn't a problem. Tami noticed that the vein in his arm was looking good and thought we'd be able to use it next week. Actually I kind of like the foot or the hand better because Scotty tucks his arms underneath him when he sleeps then our lines get cut off. He didn't sleep this week at all either during treatment which in the long run is another good thing so he's tired when we get home.
Scotty's Geneticist came in yesterday morning and I felt we had a real good conversation, he said that 2 of the Allergy Doctors were going to come by later and wanted to talk to me about the premeds and postmeds Scotty was taking. I was thinking ok I'm not sure if they'll want to listen to my suggestions but we'll see. I had met one of the Doctors before right after Scotty had his reaction and we really like her but it was my first time meeting the 2nd Doctor and she was also great. They really listened to what I had to say and I felt that it wasn't just a "courtesy listen". I told them about my concerns of some of the medications we were using and I told them to be totally honest I choose not to give Scotty his 3 days of postmeds (Steroid)last week because I don't think he needs them compared to the side affects that the steroids have. She said she respected what I was trying to do as a mother byeliminating the use of meds if they are not needed and their goal is to get him off the Steroid. She did ask that if we saw the redness today that I continue with the steroids, I told her that I would. We talked about the problem of the gas and how I felt it was due to the meds which in my earlier conversation with Scotty's Geneticist he wasn't seeing or feeling the connection but one of these Doctors had heard that the Steroid has had this affect.

They also agreed that we could switch the Benadryl Scotty has been taking which has always bugged me to Claritin and I am now to give Scotty a daily dose of it to see if this will help with the redness, if it does than we can start backing off of the steriods. I am now going to give him a daily dose of Simethicone drops for the gas, so we will be tweeking a lot of things this week and I'm really excited & anxious to see what affects they will have on little Scotty man? hopefully no more gas or redness.
Oh Scotty's Pediatrician was so nice she called me last night on my cell phone to see how it went and if I talked with the other Doctors about the gas issue so maybe we all are on the same page finally.

We were at home by 9:45 pm and Scotty was asleep by 11:00. I was a little concerned about this since he has spent the better part of the last 2 days laying in a hospital bed but he must of been tired! He didn't even get up last night or this morning for a drink of water. Daddy sent him off to school this morning and he was fine and his teacher called this afternoon and said he had a great day, still a little tired but not beyond tired and grouchy.

Tomorrow we are leaving to visit some friends that have 2 MPS III daughters for the weekend. I can't wait to seem them all it has been a while since I've seen the girls!

I know this is long and better get going so we can go get our Christmas tree. We didn't have one Christmas decoration up yesterday morning when Scotty & I drove off for treatment but when we got home all the lights were up outside and it looked beautiful. The sad funny part is now we've decided to go to So. CA for Christmas and will be leaving in 2 weeks but daddy did a great job outside! Now mommy needs to get the inside done.
Hope you all have a great weekend.
Hugs to all of you
Kim,

Wednesday, December 6, 2006 11:43 AM CST

***Wednesday afternoon update*****

Scotty's teacher called me shortly after I entered my new journal entry this morning to say Scotty was in pain didn't want to walk or sit and was saying ouch. Tom went to pick him up then called me on his way home (as I waiting at home for a call back from Scotty's pediatrician) and said he's really in pain and seems to be having like spasms every 10-15 seconds so I said I was still waiting for call back but for him to just take Scotty to ER since they were already on the other side of town where the hospital was and I would meet them there. I got there then Scotty's Ped. called me while we were waiting and I explained to her what was going on. She said she was going to have us come to her office but if Scotty is in that much pain than we should stay there for the xrays. We had talked yesterday morning about this problem and she said we'd give him some stool softner prior to giving him the ERT premeds! which sounded good but he had 4 bm's between that evening and the following morning and still was in pain so that is why I wanted Tom to take him to ER to ease my mind if it was impacted bowels or possibibly his back????

We spent 7 hours there today/tonight only to have xrays, blood test and urine sample come back clear ....which is a good thing but a bad thing when the minute we leave Scotty is still in pain!!!

Xrays showed some gas in his abdomen.....at the very least I was expecting "impacted" bowels not "some gas".
When the Dr. came back to go over test I said ok what about his back (already checked hips) do you want to see what he does when he tries to stand or we try to sit him up......ohhhhhhhh ok if you want
helloooooooooooooooo
so we get Scotty to stand and what's he do? CRACKS UP! Tries to get the pulse ox thingie off his toe as he's walking... the Dr. said can we get him to touch his toes? "No" so
I put his fish toy on the ground (on a book on the ground) and I said he won't pick it up he will tell me to do it for him (he can be a little bossy) and he does tell mommy to get it but I tell him to get it himself so he kicks it to a better spot and then bends over and picks it up! Go figure

OK we've made up this pain! luckily his ER nurse did see that he was in pain and uncomfortable and we aren't crazy. They gave us a little pain medication and sent us on our way. As we lifted Scotty into his car seat he said ouch..... went to dinner had to rush because he was in pain.... I talked to his pediatrician after we got home and she really thinks it's the gas ok but what's causing it? He's been having this pain since premeds We went over his premeds and then I thought maybe it's the premeds and some of the supplements that aren't mixing well together but I did give his list of supplements to Allergist before she prescribed the premeds.
I'm just going to have to talk with Dr. at Stanford tomorrow. Worse case will be to get back xrays or MRI when we do Port. at least for a peace of mind.

Here is a coincidence though.....our ER RN was talking to us when we got into the room and was very interested in MPS because she came from working at a children's hospital in Washington DC and was very interested in the metabolic field and hadn't heard about MPS. I explained it to her gave her phamplets and told her about Scotty's weekly treatments at Stanford ...she looked at me and said Lucille Packard Children's Hospital? (which is LPCH of Stanford) and I said yes and she said well I just got hired there and we are moving to Palo Alto, her husband also does something in Medical field in Palo Alto and she said I bet Scotty is getting treatments where I have been hired? I said are you going to be working in the Day Hospital and she said YES! Now how weird is that? So she was very very kind and this may have been the reason we were there today..I believe things happen for a reason.

We got home late and now I'm packing up for another long day tomorrow! My poor little Scotty man ...maybe I can have them hook his IV up so he can be mobile and I will take him for walks or something. Tom's off but he is coughing and really should not be in the day hospital where these kids are getting treatments. I think he'll just have to stay home and put up Christmas decorations.
I'll keep you all posted about what's happening. I've got to get to bed because I have to be up in about 4.5 hours! Yikes...I will be needing the Starbucks tomorrow morning!
hugs

Hi Everyone

Thank you for checking up on Scotty
I know a lot of you come on Thursdays or Fridays to see how Scotty did with his treatment and that means so much to me. Knowing you all care so much really helps Scotty & I get through these weekly treatments.. I am really looking forward to the day that I can say again that the treatment went perfect and there was NO REACTION! It will happen, I know it will.. that's my CHRISTMAS WISH!

It's been kind of a long week for little Scotty man.....it just seems like with all the premeds, meds during treatment & postmeds (up to 72 hours later) he gets ...he finally gets over any side affect and then we have to start up again. His problem is one of the meds is causing him to have constipation and his little tummy gets so hard and by Sunday night it hurts him to walk or even sit. I had to pick him up from school on Monday because he wouldn't walk or sit and was saying ouch. I wanted to get some xrays that day but it didn't happen but I did speak with his pediatrician yesterday (unfortunately she's off on Mondays) and now we are going to premedicate him with some softener before we start the premeds for the treatment! Follow me? It does get a little crazy.

Someone finally called from the hospital last night about any questions I may have regarding Scotty getting a Port and the different Ports available. Well I know what Port we want so I told her I really don't have any questions regarding the "port" per say but I do have questions about the sedation so I guess I need to talk with the Anesthesiologist.
I prefer to do that now and not the day before surgery (I'd never do that)so hopefully I will talk with them soon..

I have to tell you "No" we haven't put up any Christmas Decorations yet, maybe today! Tom just got off this morning for the next week so I'm hoping we'll get some well all decorating done. I'm not even sure what we are doing for Christman? Haven't heard from any of my family members except my sister-in-law about it so I think we will actually head down to Southern CA and visit them in San Diego then end up at Disneyland on Christmas! I think that would be so much fun. I also have some friends down there who want us to visit I just need to look at Scotty's treatment schedule...that may determine everything we do at Christmas.
I don't want to skip a treatment because of the reactions we need to be consistent. I guess I'll figure it out in the next few days. LOL

Hope you all are having a wonderful Holiday Season!

Love,
Kim

Wednesday, December 6, 2006 11:43 AM CST

Hi Everyone

Thank you for checking up on Scotty
I know alot of you come on Thursday or Friday to see how Scotty did with his treatment and that means so much to me. Knowing you all care so much really helps Scotty & I get through these weekly treatments.. I am really looking forward to the day that I can say again that the treatment went perfect and there was NO REACTION! It will happen, I know it will.. that's my CHRISTMAS WISH!

It's been kind of a long week for little Scotty man.....it just seems like with all the premeds, meds during treatment & postmeds (up to 72 hours later) he gets ...he finally gets over any side affect and then we have to start up again. His problem is one of the meds is causing him to have constipation and his little tummy gets so hard and by Sunday night it hurts him to walk or even sit. I had to pick him up from school on Monday because he wouldn't walk or sit and was saying ouch. I wanted to get some xrays that day but it didn't happen but I did speak with his pediatrician yesterday (unfortunately she's off on Mondays) and now we are going to premedicate him with some softener before we start the premeds for the treatment! Follow me???????? It does get a little crazy. I feel so bad also because Scotty has missed more school this year than he has total the last 5 years.
Again, I know this will get better
Love,
Kim

Saturday, December 2, 2006 3:51 PM CST

Hello Everyone

Some of you may read my earlier post about Scotty's treatment on Thursday but I'll give a little recap... Scotty once again in about the 5th or 6th hour at his max rate of 28 of his infusion began to turn red. Normally it will come and go but last Thursday is seemed to be a little more red and didn't want to go away even after some Benadryl and hydrocortisone. But after talking with the Dr. they felt (and I felt) comfortable with us going home. We were at the hospital until at least 10:15- 10:30 pm by the time we left Scotty's face was a little flushed and by the time we got home at 11:45 pm he was back to his normal coloring. For the first time ever Scotty actually slept on the way home from his treatment, I don't think this was from not feeling well but more of pure exhaustion. He didn't take his normal 3 hour nap or any nap during the infusion even though he was tired. Once we got home I was able to put him right to bed in our bed (so I could watch him and listen to his breathing)he didn't wake up again until his normal 3:15 am wake up for a drink of water and maybe a little mommy wake up at 5:30 am but that was just a quick wake up then he slept until 12:15 pm! Needless to say he didn't go to school on Friday...which is ok because I had spoke with his teacher on Tuesday who said Friday's are tough on Scotty now since starting the ERT, it wasn't too bad when we were getting home at a decent hour but now that we are getting home so late and him normally being wired for a while before going to bed he is just really tired on Friday and doesn't get much done at school. I hate to see him missing so much school but hopefully we'll get these reactions under control and getting home early again.

It also took a while to find a good vein to access on Thursday.....they all are so small and crooked and that's if you can see them. We are using a heating patch, a heated pad, warm blankets and whatever else we can to plump up the veins for access including us giving him lots of liquids the night before. I think there are a few more we can use in his feet if I can keep his socks on to keep his feet warm but after that I think we will have to get the port. The nurses are so good when we start IV access, I always have Scotty's portable DVD player with us in the little room and my endless supply of apple jacks...it's easier for us to do it in the little room with Scotty in his chair than trying to do it while he is laying in bed, he is just too strong and knows he can move around even with 4 of us holding him. I think the max that he has ever been poked is 3 times but Nurse Tami is awesome! I don't know how she does it but she does, again they are always surprised how well Scotty does just sitting there in his chair, don't get me wrong he will cry but just for a minute or until he sees another apple jack! Last Thursday there was a little boy in the next room to Scotty at the day hospital who had a port that our nurse introduced us to and I was able to see his port and I was quite surprised that I really couldn't see it! Well I did because they had just taken out the needle and it was still bleeding just a little but if I hadn't seen the blood I don't think I could of pointed out where it was and this was a pretty skinny little boy. With Scotty being a little heavier (lol) I don't think the port would be visible at all. Someone from Surgery was suppose to call me that night because they were told we would be there late or the next day to talk about the port but I haven't heard from anyone yet. I guess I should call them Monday.

Thank you all for checking up on Scotty, we are so blessed to have such wonderful, caring friends.
Love,
Kim

Saturday, December 2, 2006 3:51 PM CST

Hello Everyone

Some of you may read my earlier post about Scotty's treatment on Thursday but I'll give a little recap... Scotty once again in about the 5th or 6th hour at his max rate of 28 of his infusion began to turn red. Normally it will come and go but last Thursday is seemed to be a little more red and didn't want to go away even after some Benadryl and hydrocortisone. But after talking with the Dr. they felt (and I felt) comfortable with us going home. We were at the hospital until at least 10:15- 10:30 pm by the time we left Scotty's face was a little flushed and by the time we got home at 11:45 pm he was back to his normal coloring. For the first time ever Scotty actually slept on the way home from his treatment, I don't think this was from not feeling well but more of pure exhaustion. He didn't take his normal 3 hour nap or any nap during the infusion even though he was tired. Once we got home I was able to put him right to bed in our bed (so I could watch him and listen to his breathing)and he didn't wake up again until his normal 3:15 am wake up for a drink of water and maybe a little mommy wake up at 5:30 am but that was just a quick wake up. He did not wake up again until 12:15pm! Needless to say he didn't go to school on Friday...which is ok because I had spoke with his teacher on Tuesday who said Friday's are tough on Scotty now since starting the ERT, it wasn't too bad when we were getting home at a decent hour but now that we are getting home so late and him normally being wired for a while before going to bed he is just really tired on Friday and doesn't get much done at school. I hate to see him missing so much school but hopefully we'll get these reactions under control and getting home early again.

It also took a while to find a good vein to access on Thursday.....they all are so small and crooked and that's if you can see them. We are using a heating patch, a heated pad, warm blankets and whatever else we can to plump up the veins for access including us giving him lots of liquids the night before. I think there are a few more we can use in his feet if I can keep his socks on to keep his feet warm but after that I think we will have to get the port. The nurses are so good when we start IV access, I always have Scotty's portable DVD player with us in the little room and my endless supply of apple jacks...it's easier for us to do it in the little room with Scotty in his chair than trying to do it while he is laying in bed, he is just too strong and knows he can move around even with 4 of us holding him. I think the max that he has ever been poked is 3 times but Nurse Tami is awesome! I don't know how she does it but she does, again they are always surprised how well Scotty does just sitting there in his chair, don't get me wrong he will cry but just for a minute or until he sees another apple jack! Last Thursday there was a little boy in the next room to Scotty at the day hospital who had a port that our nurse introduced us to and I was able to see his port and I was quite surprised that I really couldn't see it! Well I did because they had just taken out the needle and it was still bleeding just a little but if I hadn't seen the blood I don't think I could of pointed out where it was and this was a pretty skinny little boy. With Scotty being a little heavier (lol) I don't think the port would be visible at all. Someone from Surgery was suppose to call me that night because they were told we would b e there late or the night day to talk about the port and I haven't heard from anyone yet. I guess I should call them Monday.
Well thank you all for checking up on Scotty we are so blessed to have such wonderful, caring friends.
Love,
Kim

Thursday, November 30, 2006 8:58 PM CST

Well we are over our 2 hour observation period and things aren't looking so good. Scotty was quite a bit more red today/tonight than he has been in the last couple of weeks. They gave him a dose of hydrocortisone about 15 minutes ago that didn't seem to help a bit. We'll give it a little longer...Day Hospital is open till 10:00pm so hopefully his redness will be gone by then and we can go home.??
I'll keep you posted...as I think the nurse is talking with Dr. now.
Well it's late (11:45pm) but we're home. Scotty slept most of the way and I just put him right into bed...he didn't nap at all today so he's pretty tired. I think I've been up 20 plus hours so time to go to bed. I'll update more tomorrow.
Hugs,
Kim

Sunday, Nov. 26, 2006
Hi Everyone

I hope all of you and your families had a safe & wonderful Thanksgiving... We just returned home today from our trip to the coast (Monterey/Carmel). We had a great time and ate way too much! Scotty was in heaven being surrounded by his little cousins (all girls) and his Aunt and Uncle. Saturday we actually went to the beach in Carmel and my little nieces swam! It was sunny but a little chilly so Scotty and I sat up on the beach people watching. I will post some pictures tomorrow, I have some really good ones.
Hugs,
Kim

Sunday, November 26, 2006 8:52 PM CST
Hi Everyone

I hope all of you and your families had a safe & wonderful Thanksgiving... We just returned home today from our trip to the coast (Monterey/Carmel). We had a great time and ate way too much! Scotty was in heaven being surrounded by his little cousins (all girls) and his Aunt and Uncle. Saturday we actually went to the beach in Carmel and my little nieces swam! It was sunny but a little chilly so Scotty and I sat up on the beach people watching. I will post some pictures tomorrow, I have some really good ones.
Hugs,
Kim

Thursday, November 23, 2006 8:47 AM CST

Hi Friends

I had originally thought Scotty's treatment this week would be on Friday because that is what our schedule said but I found out last week that it is tomorrow. I started getting a little stressed about it this weekend. If you read my last journal you will know that we left the hospital parking lot at 9:00 pm and if this is the time we leave tomorrow night.....oh boy I am toast! That means I will be heading out of town with the Thanksgiving travelers leaving San Fransisco/Bay Area and they all head the way I am going! It will take me FOREVER to get home. Then we are suppose to head out the next morning with our trailer back over to the coast! I have a call into the Day Hospital Supv. and Scotty's Dr. to figure out how I can get out of there sooner! I do not want Scotty to miss this weeks treatment because the reactions seem to be getting better the more treatments he's getting and I don't want to go backwards. Had I thought about it I should of just asked to of done it today. We'll see what happens today.

I just wanted to say "Thank You" from the bottom of our hearts for continuously checking up on Scotty and signing his guestbook to let us know that you've stopped by. We have many things to be Thankful for this year, of course the approval of Scotty's ERT is at the very top but right under that I have to say is the Love and Encouragement that you all have given to Scotty, to us through his website. My MPS & Caringbridge families have helped me through some very difficult days and definitely through the last few months. I appreciate your calls, your emails, and your advice that I have asked for on so many different occasions. You guys are awesome, I love you all!
With that being said, I hope you and your families have a safe & Happy Thanksgiving.
Many Hugs,
Kim & Scotty

Wednesday update: Doing ERT now

The commute in was the best ever! It was bumper to bumper on our first highway for 30 miles and thought here we go but when I got onto highway 5 it's like wohoo! Scotty slept the entire way, I actually had to drive the speed limit, not get in commuter lane, drive around mall by hospital just to see what's there and get coffee in cafeteria to waste time and we were still 30 minutes early. Oh the best part is the premed Scotty had to take at 4:30 am he drank in one big gulp....no mommy and daddy having to sit by him feeding him Apple Jacks to make him thirsty and bribing him....

Well like the last 4 weeks, same place, same time Scotty's face got a little flushed so they called the Dr. who said ....give him another dose of benadryl and I swear it got even more red but not for long. It came and went and when we were close to being done they called Scotty's Doctor again who wanted to speak to me and I thought....oh please don't do it to us today...so he just asked how I felt Scotty was doing and I said the same as the last four weeks and that was fine....we were given a list of post-meds last week so we have to give some tonight when we get home and a dose the next 2 mornings. Before we left I was watching the news and the traffic was bad! We pulled out of the parking lot about 9:15 and the traffic was not bad at all. It rained a little but we made it home in 1.5 hours. I let Scotty watch a movie on the way home just in case we got stuck in traffic.
It's 11:20 pm and Scotty doesn't look a bit tired so it may be a long night but it's daddy's shift. We are spending Thanksgiving with my older sister and her kids/grandkids at the coast so we will get up tomorrow morning and head to Monterey with our trailer until Sunday.

When I was driving home I was thinking what it was like a few years ago when my family got together for Thanksgiving and the smell of stuffing the night before! I miss it
Most of us are still in the area but choose to do their own thing...which is sad because this should be the happiest time I would think for not just ourselves but my whole family celebrating Scotty's treatment. We'll just continue to make our own traditions and I'll learn how to make stuffing! LOL
Happy Thanksgiving Friends
Love,
Kim, Tom & our little doodlebug Scotty

Tuesday, November 21, 2006 8:47 AM CST

Dear Friends,

I just wanted to say "Thank You" from the bottom of our hearts for continuously checking up on Scotty and signing his guestbook to let us know that you've stopped by. We have many things to be Thankful for this year, of course the approval of Scotty's ERT is at the very top but right under that I have to say is the Love and Encouragement that you all have given to Scotty, to us through his website. My MPS & Caringbridge families have helped me through some very difficult days and definitely through the last few months. I appreciate your calls, your emails, and your advice that I have asked for on so many different occasions. You guys are awesome and I love you all.
With that being said, I hope you and your families have a safe & Happy Thanksgiving.

Friday, November 17, 2006

HAPPY FRIDAY EVERYONE!

The best part about this Friday is Scotty and I get to start it off from home. No hospitalization required after yesterday's ERT. This doesn't mean he didn't have a reaction because he did, the now "usual" coming and going of the red face but yesterdays was milder than last weeks. I thought we were almost reaction free but the redness came almost exactly the same time it started last week....that is about the start of the 5th hour of infusion. It takes us about 6 hours with infusion & flush because we are still infusing at slower rate because of the reactions. The nurses immediately paged Scotty's Doctor when I had told them the redness was coming on and he came right over (his office is across the street) to check him out. We then gave Scotty another dose of Benadryl and immediately saw the redness go away. It came back a tiny bit about 45 minutes later then just went away again.. I think each week Scotty's body is getting more acceptable of the Elaprase and very soon the redness will be completely gone.

Scotty's Doctor was true to his promise and did not leave the hospital until Scotty was done (including our observation time)so he stopped by at 8:30 pm when we were unhooking all the monitors from Scotty. It was a nice peace of mind for me to know he and his nurse (Vicki)were there. Vicki had come over about lunch time and we discussed some pre- medication/post-medication issues and then she was so nice and asked if she could get me something for lunch because I can't leave so she went down and got me a salad from the cafeteria.
Thank You Vicki!

I was told yesterday that my email that I sent Monday has made it's way very quickly to the appropriate people at the hospital...hopefully they can fulfil our request that Scotty never be transported out of their hospital again when he needs to be admitted for observation following a reaction. Scotty may never have another reaction but for "our peace of mind" we need to know that it won't happen. The Day Hospital Manager whom I've spoken to but have never physically met until yesterday came in yesterday during Scotty's treatment and we had a nice conversation....she let me know that she had called that morning to see if beds were available in case Scotty needed admitting and they were....but that doesn't mean they would of been at 5:00 when Scotty started his reactions so this is the big gray area that we needs resolving.
Then we can work on fine tuning our schedule it makes for a VERY LONG DAY AND NIGHT when we are up at 4:30 am to start Scotty's pre-medications..I don't go back to sleep and we usually head out about 6:30 am. We pulled out of the Hospital parking lot last night at 9:00 pm for at least a 1.5 hour drive home (that's driving fast)and I have to admit that at the end of our drive lights were getting blurry. Of course we don't go right to sleep because Scotty is now wide awake and visiting with daddy....last night I think it was 12:30 am before he went to sleep and he was back up at 3:00 am for just a bit.
Only other issues yesterday were IV access and removal of IV.....I have never ever seen Scotty so mad and combative in my life! Poor little guy. Scotty's nurse was great and actually stuck Scotty on the first poke but it was an athletic event! I don't know how she did it, even with 3 of us holding him he was moving all over. Way to go Nurse Tami, you're awesome!

It was right after Scotty's Doctor left that we started to take the IV out ...man he was kicking, screaming, hitting and trying to bite. I should of started preping the tape for removal sooner..we use some adhesive wipes but baby oil works much better and I will be sure to have that with me next week.
Hope you all have a great weekend.
Hugs,
Kim

Tuesday, Nov. 14th

Hi Everyone

I'm really sorry I kind of left you hanging last week, I just wanted to let you know asap (and I was still late) that Scotty was fine because I knew all of our wonderful friends would be checking up on him. I didn't elaborate on what happened at the hospital because I was just at a very emotional low...from mental & physical exhaustion and I just didn't trust myself as to what I might write that I may of regretted later. I guess I just never realized all the stress that would come along with Scotty's treatments. I know a lot of it is self inflicted stress because I am such a control freak but I've got to be to be Scotty's best Advocate. Trust me there are times when I wished (as I'm sure Scotty's Teachers & Doctor's do too)I was one of those mothers who had no idea what their child's goals were on their IEPs or did whatever the hospital/Doctor said to do and not question why even if it was not in their child's best interest.....life would probably be a lot less stressful for everyone involved but that's not me.
Scotty has a wonderful Genetics Doctor, I know whole heartedly that he is always looking out for Scotty's best interest especially when he wants Scotty to stay overnight for observation. I understand where he is coming from of not wanting us to drive the 90 miles home at night after seeing a reaction (even if it's small).
Unfortunately what happens after we agree to be admitted is where our problems start...there are never any beds available! So we are now 2 for 2 of being transported out of the "World Class" hospital we choose for Scotty's treatments to hospitals that I feel are sub-par, not to mention unfamiliar with MPS which as you know is not a good thing when you have a MPS child with an obstructed airway.
I will just say that the hospital is now aware of our frustration and hopefully they can come up with a solution very soon, preferably the one I suggested. (control freak)

We have agreed to go ahead with treatment on Thursday because Scotty's Dr. will be present and agreed not to leave until Scotty was done.

Thank you all so much for your kind words and prayers. Scotty's little body will eventually get use to the Elaprase and we'll get through this hurdle. In the meantime, knowing you're all here supporting us really means the world to me, to us.
Love you all!
Kim

Tuesday, November 14, 2006 11:16 PM CST

Hi Everyone

I'm really sorry I kind of left you hanging last week, I just wanted to let you know asap (and I was still late) that Scotty was fine because I knew all of our wonderful friends would be checking up on him. I didn't elaborate on what happened at the hospital because I was just at a very emotional low...from mental & physical exhaustion and I just didn't trust myself as to what I might write that I may of regretted later. I guess I just never realized all the stress that would come along with Scotty's treatments. I know a lot of it is self inflicted stress because I am such a control freak but I've got to be to be Scotty's best Advocate. Trust me there are times when I wished (as I'm sure Scotty's Teachers & Doctor's do too)I was one of those mothers who had no idea what their child's goals were on their IEPs or did whatever the hospital/Doctor said to do and not question why even if it was not in their child's best interest.....life would probably be a lot less stressful for everyone involved but that's not me.
Scotty has a wonderful Genetics Doctor, I know whole heartedly that he is always looking out for Scotty's best interest especially when he wants Scotty to stay overnight for observation. I understand where he is coming from of not wanting us to drive the 90 miles home at night after seeing a reaction (even if it's small).
Unfortunately what happens after we agree to be admitted is where our problems start...there are never any beds available! So we are now 2 for 2 of being transported out of the "World Class" hospital we choose for Scotty's treatments to hospitals that I feel are sub-par, not to mention unfamiliar with MPS which as you know is not a good thing when you have a MPS child with an obstructed airway.
I will just say that the hospital is now aware of our frustration and hopefully they can come up with a solution very soon, preferably the one I suggested. (control freak)

We have agreed to go ahead with treatment on Thursday because Scotty's Dr. will be present and agreed not to leave until Scotty was done.

Thank you all so much for your kind words and prayers. Scotty's little body will eventually get use to the Elaprase and we'll get through this hurdle. In the meantime, knowing you're all here supporting us really means the world to me, to us.
Love you all!
Kim

Friday, November 10, 2006 10:14 PM CST
Hi Everyone

I know some of you have been checking in to see how Scotty did yesterday with his infusion and I'm sorry it has taken me until tonight to tell you. We did not get home until 3:30 today. I'm very tired but will give you the quick version and that is... Scotty is fine. He got a little red around his eyes and nose like he has for the past 3 infusions but they wanted to admit him this time.

The Day Hospital where Scotty gets his infusion normally closes at 10:00 pm....we left at 12:30 a.m. We got in our room (double)at 2:00 a.m. this morning and Scotty finally fell asleep at 3:30 a.m. You can see how bad our night (morning) was so that is all I am going to say about it right now.. maybe this weekend I will give you all the details but I don't know if you'd believe me!!!
Good Night
Kim

Friday, November 10, 2006 10:14 PM CST
Hi Everyone

I know some of you have been checking in to see how Scotty did yesterday with his infusion and I'm sorry it has taken me until tonight to tell you. We did not get home until 3:30 today. I'm very tired but will give you the quick version and that is... Scotty is fine. He got a little red around his eyes and nose like he has for the past 3 infusions but they wanted to admit him this time.

The Day Hospital where Scotty gets his infusion normally closes at 10:00 pm....we left at 12:30 a.m. We got in our room (double)at 2:00 a.m. this morning and Scotty finally fell asleep at 3:30 a.m. You can see how bad our night (morning) was so that is all I am going to say about it right now.. maybe this weekend I will give you all the details but I don't know if you'd believe me!!!
Good Night
Kim

Friday, November 10, 2006 10:14 PM CST
Hi Everyone

I know some of you have been checking in to see how Scotty did yesterday with his infusion and I'm sorry it has taken me until tonight to tell you. We did not get home until 3:30 today. I'm very tired but will give you the quick version and that is... Scotty is fine. He got a little red around his eyes and nose like he has for the past 3 infusions but they wanted to admit him this time.

The Day Hospital where Scotty gets his infusion normally closes at 10:00 pm....we left at 12:30 a.m. We got in our room (double)at 2:00 a.m. this morning and Scotty finally fell asleep at 3:30 a.m. You can see how bad our night (morning) was so that is all I am going to say about it right now.. maybe this weekend I will give you all the details but I don't know if you'd believe me!!!
Good Night
Kim

Friday, November 3, 2006 11:39 AM CST

Happy Friday Everyone

Yesterday was Scotty's second infusion since his reaction and everything went great. Scotty did not have to be admitted this time we were able to go back to the Day Hospital (2 floors down) where we had been going. It was so nice to get back to our regular routine rather than the long hospital stays. The infusion rate was bumped up yesterday to 32 (ml per hour) where as last week we went to 16 and maxed out there.. our normal max is 40 which I think we'll be back to next week. The infusion and flush took 6 hours yesterday and we didn't actually start until 12:15 after IV access and premeds. After the infusion we had to stay another 2 hours for observation which got us out of the hospital at 8:30 then we had a 1.5 hour drive home....(which beats the 2.25-2.5 drive in commuter traffic)so yes it was a VERY LONG DAY but it beats being in the hospital for 4 days so I was just thrilled that it was all done in 1 day. Scotty being the trooper that he always is just went with the flow and was as good as can be yesterday. He never cries, never gets mad just lays in bed (or sits up) and cracks up watching his movies. He actually slept the first 3 hours of the infusion yesterday which was nice because he had been up since 4:00 am when we had to give him some premedication. He was pretty quiet on the way home but once we were home he was buzzing around for hours. Tom said he sat on the couch with him until 4:00 am this morning....He woke back up at 6:30 took a bath then was back to buzzing around. It will be interesting to see how he does at school today....I would think he would crash and burn but the norm is he has a great day at school....it's the nights he gets 10-12 hours of sleep that the teachers will write in his book the next day that Scotty was very tired???????? I will never understand it.
Well I hope you have have a GREAT WEEKEND and THANK YOU for checking in on Scotty.
Hugs,
Kim

Wednesday, November 1, 2006 7:01 PM CST

Hello Everyone

Hope you all had a safe and Happy Halloween!

Because of our last stay at the hospital that lasted 3 days longer than I thought it would I was not able to find Scotty a Halloween Costume on Monday....everything was so picked over so we all just hung out at home and gave out candy. Tom didn't get home from work until 6:30 pm and Scotty was already getting tired with the time change and all so it really wasn't a big deal. Of course he had a lot of company because when trick or treaters came to the door that knew us they always came in to say "Hi" to Scotty man. We have a neighbor boy that is about 17 yrs old who stays at our house when we are gone who came down specifically to give Scotty a huge snickers bar, a big bag of skittles and a big size reese's peanut butter cup....it was so sweet! Scotty was all shy but of course he took the candy than ran and hid....he grabbed the skittles but I think it was because of the bright bag ...he never did eat any of the candy but saw it on the kitchen counter this morning and wanted it. So funny

Tomorrow we are back to our regular schedule for Scotty's infusion at the Day Hospital. We will start premedicating tonight and they are still infusing at the slower rate like last week but that's fine with me.
Hopefully Scotty will be reaction free just like last week! Keep your fingers crossed for us.
Hugs,
Kim & Scotty

Wednesday, November 1, 2006 7:01 PM CST

Hello Everyone

Hope you all had a safe and Happy Halloween!

Because of our last stay at the hospital that lasted 3 days longer than I thought it would I was not able to find Scotty a Halloween Costume on Monday....everything was so picked over so we all just hung out at home and gave out candy. Tom didn't get home from work until 6:30 pm and Scotty was already getting tired with the time change and all so it really wasn't a big deal. Of course he had a lot of company because when trick or treaters came to the door that knew us they always came in to say "Hi" to Scotty man. We have a neighbor boy that is about 17 yrs old who stays at our house when we are gone who came down specifically to give Scotty a huge snickers bar, a big bag of skittles and a big size reese's peanut butter cup....it was so sweet! Scotty was all shy but of course he took the candy than ran and hid....he grabbed the skittles but I think it was because of the bright bag ...he never did eat any of the candy but saw it on the kitchen counter this morning and wanted it. So funny

Tomorrow we are back to our regular schedule for Scotty's infusion at the Day Hospital. We will start premedicating tonight and they are still infusing at the slower rate like last week but that's fine with me.
Hopefully Scotty will be reaction free just like last week! Keep your fingers crossed for us.
Hugs,
Kim & Scotty

Tuesday, October 31, 2006 8:56 AM CST

We hope you all have a SAFE & HAPPY HALLOWEEN!

Love, Kim &

Tuesday, October 31, 2006 8:56 AM CST

We hope you all have a SAFE & HAPPY HALLOWEEN!

Love, Kim &

Saturday, October 28, 2006

Hi Everyone

I am very happy to tell you all that Scotty was reaction free during his infusion yesterday!

They slowed down the infusion rate and we premedicated 6 hours prior, 1 hr prior, 30 minutes prior and during the infusion. It took nearly 7 hours for the infusion and the flush but I'd rather it take longer than have another reaction.
The Genetics Nurse was here with us the first hour of the infusion and then later came back by. Scotty's Doctor was in a meeting in the morning but came by in the afternoon. The floor nurse (Jen)who took care of Scotty did an awesome job.

The bad news of this update is that we are still in the hospital.
I almost had the Doctor talked into letting us leave this afternoon until she found out we lived 90 miles away.

So I guess we'll be going home tomorrow morning. What's one more day of doing nothing in a germ filled building?

Thank You for checking up on us. We love you all!
Hugs,
Kim & Scotty man

Friday, October 27

Hi Everyone

Yesterday Scotty did not receive his first infusion since the Reaction as planned.....Our bad day started as soon as we arrived at the hospital. I had been told previously that Scotty was scheduled to be admitted to the hospital rather than getting his infusion in the Day Hospital as we had done the first four treatments. This was being done at the Day Hospital Nurses request not Scotty's Geneticist...although I understand the need for Scotty to be observed during and after treatment because of the previous reactions I do not understand their logic that Scotty will be observed much closer here!!! It seems more logically to me to have the same nurses take care of him who have already witnessed the serverest of the severe reactions possible rather than nurses who have never been trained on this ERT infusion and have no idea what MPS is. Have you ever heard the phrase "be afraid, be very afraid"? that was me yesterday!
It just did not seem like to me that everyone was on the same page.

Back to Admitting... when we were told we were being admitted I just assumed that meant when we arrived Scotty's bed would be ready. After speaking with the nurse the night before she assured me that someone from Hospital Admissions would be calling shortly to go over the admission but that never happened so I ended up calling the hospital at 8:30 pm and speaking with someone in Admitting only to be told we were scheduled to be there the next day and that was it no time, nothing else this should of been my first clue! Well we had about 3 doses of 2 different premedications that I needed to give Scotty based off of "prior to infusion" time 12,13 & 7 hours before so I had to estimate (and I was conservative)that our infusion start time would be 12:00 pm. When we arrived at the hospital at 9:30 am that is when I found out that there was not a bed available for Scotty but "we were having to wait for one" which did not happen until 12:30 pm. We waited for 3 hours and Thank Goodness Scotty is so good because waiting & MPS children do not normally go hand in hand! He sat very patiently the whole time watching his movies on his portable DVD player in a quieter section of the hospital very close to the Day Hospital Entry...you can believe me when I say I was not thinking nice things about them as we sat there waiting. I (not Scotty) finally got tired of waiting so I packed up our little home theater and headed back over to admitting thinking if they had to keep looking at us maybe things would happen quicker and they did. The girl in admitting was very nice and felt very bad.
We finally got to our room around 1:00...I had to remind them that Scotty needed more premeds and he needed his IV accessed by a very good sticker. They called the PIC line nurses to access Scotty but it would be at least 30 minutes before they'd be here...when they came it took them 45 minutes to find a good vein to access and that was using a sonogram machine! Once they went in for the initial stick it didn't take long and Scotty did a great good. We sat him in his stroller and the girl from Life Services helped me hold and give Scotty treats as the other 2 were going in for the stick. I had to laugh when one of the nurses told the other nurse who was actually doing to sticking that she had better hurry up because she could see we were almost out of Scotty's treats! LOL I told her don't worry us MPS moms always have extras so I pulled out the next treats, and the next...lets see...apple jacks, a little bag of chocolate chip cookies/crackers and ended with the peanut butter ritz bits! Scotty was scamming on the girl helping me hold him...he'd want more treats then she realized he was hiding them in his hands. Sneaky little guy... Once they got IV access they ordered his premeds which took FOREVER! It was at that point that Scotty's Doctor finally came in and I told him what we were waiting for and also told him I could of gone down the street to Longs to buy these premeds myself quicker than what was happening there. I think by this time it was 4:00 and I knew he had to have these premeds 1 hour prior to infusion. We also had to make sure now that we were so off of the premeds that I gave him that we were still ok (which we were)...At this time I told the Dr. this is going to be going way into the night because we were slowing down the infusion....and now after having very little sleep and a very long day I told him I was not nearly as alert (to watch closely for reaction) as I was earlier so he and whoever had better get some Starbucks coffee because they were going to have to sit there with me and watch Scotty until it was over. Things just weren't looking good after that and I was really getting worried and starting to not want this to happen. Scotty's Dr. had left and told us to page him when we start. Apparently Shire (the Pharmaceutical Co.) had asked the Doctor to draw some blood prior to start and send off to them so they could do a test for anti bodies this meant lab had to come down. When these 2 ladies showed up I thought they were just going to draw from Scotty's IV access but they were getting ready to stick him and I said No you aren't sticking him you are suppose to use iv access. I told them what we had to go through to get the IV access that he had and there was no way they could stick him and draw blood. So 3 or 4 nurses later they finally got enough blood out of his iv access. It was at this time that a Doctor came in that had treated Scotty at the other hospital a couple of weeks ago. She was the on-call night Dr. and said she just saw Scotty's name and wanted to see what was going on. I told her what was happening and that I had also just called Scotty's Doctor to tell him this infusion can not happen tonight! We all are just too tired and these people were confused! She said she was glad I felt that way and spoke up because she thought it was best not to start the infusion until tomorrow (I don't think she really agreed with me about everyone around me being "confused" though). She said she had already started making a few calls prior to coming in about holding off until tomorrow...one of the calls was to the pharmacist to make sure that the Drug was still ok since they had already mixed it I told her it was and as long as they refrigerated it that it was good for 48 hours and being the OCD person I am about Scotty's medical records I had a copy of the drug labeling in his binder that I gave her so she could read what I just told her. If the day couldn't get worse because we were all very tired it does for Scotty & I. We were kicking back finally around 8:00 watching a movie and in walks a nurse to say we have to switch rooms! We are in our own room now and need to go to a double room because a child in coming in from transplant that needs our room. I was so angry...I was not up to sharing a room because we are so tired and even though the other person wasn't in the room yet they were en route. I asked to talk to the Doctor
on call because I was ready to leave and just get a hotel room and wanted to see if that was alright...well of course it isn't because of the premedicating they want to do.... we switched rooms and our little roommate finally shows up WHEN? right after Scotty man fell asleep at 10:30 pm. All the lights came on and stayed on while they worked on him until 1:00 am....while Scotty & I sat there watching HGTV! Of course no one sleeps well in the hospital I got out of bed with Scotty about 2:30 and then got up at 4:30 when they came in again to work on other boy! I NEED COFFEE AND I NEED A SHOWER....and I'm taking a shower in a few minutes when I know Scotty is back to a deep sleep.
We are suppose to start around 9:30 after they come in for another blood draw at 9:00 am. Almost shower time I got to go!
This has to be a better day! Wish little Scotty man Good Luck. I'm sure he'll be fine but extra prayers never hurt.
Love,
Kim & Scotty

Friday, October 27, 2006 7:01 AM CDT
Hi Everyone

Yesterday Scotty did not receive his first infusion since the Reaction as planned.....Our bad day started as soon as we arrived at the hospital. I had been told that Scotty was to be admitted to the hospital rather than getting his infusion in the Day Hospital as we had done the first four treatments. This was being done at the Day Hospital Nurses request not Scotty's Geneticist...although I understand the need for Scotty to be observed during and after treatment I do not understand their logic that Scotty will be observed much closer!!!!!! Have you ever heard the phrase "be afraid, be very afraid"? that was me
yesterday! It just did not seem like to me that the everyone was on the same page. So back to Admitting... when we were told we were being admitted I just assumed that meant when we arrived Scotty's bed would be ready. After speaking with the nurse the night before she assured me that someone from Hospital Admissions would be calling shortly to go over the admission but that never happened so I ended up calling the hospital at 8:30 pm at speaking with someone in Admitting only to be told we were scheduled to be there the next day and that was it no time, nothing else. This should of been my first clue! Well we had about 3 doses of 2 different premedications that I needed to give Scotty based off of "prior to infusion" 12,13 & 7 hours before so I had to estimate (and I was conservative)that our infusion start time would be 12:00 pm. When we arrived at the hospital at 9:30 am that is when I found out that there was not a bed available for Scotty but "we were having to wait for one" which did not happen until 12:30 pm! We waited for 3 hours and Thank Goodness Scotty is so good because waiting & MPS children do not normally go hand in hand! He sat very patiently the whole time watching his movies on his portable DVD player in a quieter section of the hospital very close to the Day Hospital Entry...you can believe me when I say I was not thinking nice things about them as we sat there waiting. I (not Scotty) finally got tired of waiting so I packed up our little home theather and headed back over to admissions thinking if they had to keep looking at us maybe things would happen quicker and they did. The girl in admitting was very nice and felt very bad.
We finally got to our room around 1:00...I had to remind them that Scotty needed more premeds and he needed his IV accessed by a very good sticker. They called the PIC line nurses to access Scotty but it would be at least 30 minutes before they'd be here...when they came it took them 45 minutes to find a good vein to access and that was using a sonogram machine! Once they went in for the initial stick it didn't take long and Scotty did a great good. We sat him in his stroller and the girl from Life Services helped me hold and give Scotty treats as the other 2 were going in for the stick. I had to laugh when one of the nurses told the other nurse who was actually doing to sticking that she had better hurry up because she could see we were almost out of Scotty's treats! LOL I told her don't worry us MPS moms always have extras so I pulled out the next treats, and the next...lets see...apple jacks, a little bag of chocolate chip cookies/crackers and ended with the peanut butter ritz bits! Scotty was scamming on the girl helping me hold him...he'd want more treats then she realized he was hiding them in his hands. Sneaky little guy... Once they got IV access they ordered his premeds which took FOREVER! It was at that point that Scotty's Doctor finally came in and I told him what we were waiting for and also told him I could of gone down the street to longs to buy these premeds quicker than what was happening there. I think by this time it was 4:00 and I knew he had to have these premeds 1 hour prior to infusion. We also had to make sure now that we were so off of the premeds that I gave him that we were still ok (which we were)...At this time I told the Dr. this is going to be going way into the night because we were slowing down the infusion....and now after having very little sleep and a very long day I told him I was not nearly as alert (to watch closely for reaction) as I was earlier so he and whoever had better get some Starbucks coffee because they were going to have to sit there with me and watch Scotty until it was over. Things just weren't looking good after that and I was really getting worried and starting to not want this to happen. Scotty's Dr. had left and told us to page him when we start. Apparently Shire (the Pharmaceutical Co.) had asked the Doctor to draw some blood prior to start and send off to them so they could do a test for anti bodies this meant lab had to come down. When these 2 ladies showed up I thought they were just going to draw from Scotty's IV access but they were getting ready to stick him and I said No you aren't sticking him you are suppose to use iv access. I told them what we had to go through to get the IV access that he had and there was no way they could stick him and draw blood. So 3 or 4 nurses later they finally got enough blood out of his iv access. It was at this time that a Doctor came in that had treated Scotty at the other hospital a couple of weeks ago. She was the on-call night Dr. and said she just saw Scotty's name and wanted to see what was going on. I told her what was happening and that I had also just called Scotty's Doctor to tell him this infusion can not happen tonight! We all are just too tired and these people were confused! She said she was glad I felt that way and spoke up because she thought it was best not to start the infusion until tomorrow (I don't think she really agreed with me about everyone around me being "confused" though). She said she had already started making a few calls prior to coming in about holding off until tomorrow...one of the calls was to the pharmacist to make sure that the Drug was still ok since they had already mixed it I told her it was and as long as they refrigerated it that it was good for 48 hours and being the OCD person I am about Scotty's medical records I had a copy of the drug labeling in his binder that I gave her so she could read what I just told her. If the day couldn't get worse because we were all very tired it does for Scotty & I. We were kicking back finally around 8:00 watching a movie and in walks a nurse to say we have to switch rooms! We are in our own room now and need to go to a double room because a child in coming in from transplant that needs our room. I was so angry...I was not up to sharing a room because we are so tired and even though the other person wasn't in the room yet they were en route. I asked to talk to the Doctor
on call because I was ready to leave and just get a hotel room and wanted to see if that was alright...well of course it isn't because of the premedicating they want to do.... we switched rooms and our little roommate finally shows up WHEN? right after Scotty man feel asleep at 10:30 pm! All the lights came on and stayed on while they worked on him until 1:00 am....while Scotty & I sat there watching HGTV! Of course no one sleeps well in the hospital I got out of bed with Scotty about 2:30 and then got up at 4:30 when they came in again to work on other boy! I NEED COFFEE AND I NEED A SHOWER....and I'm taking a shower in a few minutes when I know Scotty is back to a deep sleep. We are suppose to start around 9:30 after they come in for another blood draw at 9:00 am. This has to be a better day! Wish little Scotty man Good Luck. I'm sure we'll be fine.
Love,
Kim

Thursday, October 26, 2006
Today Scotty will have his first infusion since the reaction. He will be admitted into the hospital and will stay a minimum of 24 hours possibibly 48 hours for observation. Please keep him in your prayers that he is reaction free this infusion.
Love,
Kim & Scotty

Wed. October 18, 2006

Again I just wanted to Thank You all for checking up on Scotty.
We arrived home early evening Monday and I've been on the go since then but I'm not sure that I'm getting anything accomplished but I'm sorry I haven't updated you sooner!
Scotty is doing fine and was happy to leave the hospital. Since we've been home he really isn't sleeping well and I'm not sure what is up with that and he also seems to be having the chills which is something he hasn't done at home before. Last night (or this morning) he woke up I guess from a nightmare and it took me a while to get him settled down I think eventually I put him in bed with daddy around 4:00 am and he fell asleep. I'm not sure what the plan is for tomorrow with his treatment there is so much going on I don't think I have room to write it or the energy but if it doesn't happen it may be for the best because of him having the chills.
I am going to put a link here for some pictures I took of Scotty during his second reaction so you can kind of get an idea of what to watch for
Click Here to see photos.
What I am going to do from here on out is during Scotty's infusion is take off his shirt so I can watch for any hives and make sure his feet and hands are exposed because one of my first signs was his feet and hands were purple. Also if you have to travel any distance for the treatment make sure you always pack an emergency bag for yourself just in case you don't end up leaving for another 4 or 5 days!
I am talking with Scotty's Geneticist this afternoon and hopefully will have more information about Scotty's treatment tomorrow or next week.
The good thing is the LaVerne MPS Walk/Run is this weekend! I think I'm ready for a break and definitely ready to see our MPS Family.
Hugs & Much Love
Kim

Monday, Oct. 16th update
Hi Everyone

Thank you all for your prayers because they are working. Scotty has not had
any type of reaction since Friday. Hopefully this morning we will see Scotty's Geneticist and see what the plan is for the next Infusion on Thursday. I think we are also suppose to see a Allergist today and hopefully after that we can go home. yippee!
Unfortunately I think I now have caught a COLD! I will feel much better once we get home I'm sure.
I'll keep you posted.
Thank You
Kim

UPDATE 10/14

Hi Everyone
Thank you all who have visted Scotty's website to check up on him and are keeping him in your prayers sorry I haven't been able to update sooner but we are STILL IN THE HOSPITAL and Scotty hasn't slept much which is when I would normally get on to update. As we were preparing to leave the hospital yesterday I noticed Scotty's eyes had dark circles around them but it was dark so I turned on the light and the dark circles were actually red circles! The red was around his nose and mouth which cause his tongue and lips to be bigger so I would think it probably also affected his throat although he wasn't having any trouble breathing so I got the nurse and Dr QUICKLY and said he was having another reaction and sure enough he got redder so they gave him all the meds they gave him the day before and you could actually see the redness going away once they give him the medicine but almost looked like it went to the other extreme because he got real pale and his tongue got white. I could tell he started to feel different and I thought oh no here goes the breathing but it didn't get any worse and he was fine within a few minutes.....what's strange is Scotty had been receiving Benadryl and a Steroid every six hours since the first reaction and still had a 2nd reaction! Of course change of plans now they wanted to watch him again for 24 hours so I asking the Doctor about the Anesthesiologist there and she said yes there is one but didn't mention at that time that there wasn't one on staff at night.....she left the room to do something and came back to tell me her concerns about not having one there at night which obviously is a big concern of mine also so they made the decision to transport Scotty back to the hospital that they transported HIM FROM the day before. They had one room available and made sure Scotty got it. So I was told they wanted to observe another 24 hours and that would of been till 12 noon Saturday. The Doctors did their rounds about 12:30 and came in and said they were taking Scotty off the meds but wanted him to stay at least another 24 hours and maybe even 48 to make sure coming off the meds he was ok and the fact that we live 90 miles away was a concern if we were to leave and something happened. So we are still here until Monday or maybe Tuesday.
Scotty is being good but wanted to leave today and we couldn't which made him mad so I took him for a walk and went outside in a courtyard where they had pumpkins for the kids so we picked one out. Tom should be here soon with some supplies for us and my mom and sister are also coming for a visit. I'm sure Scotty will be happy to see some new faces. Oh we do have a nice big room to ourselves that even has this huge bathroom which has a bathtub but Scotty hasn't looked in there yet so he doesn't know about the bathtub and honestly I don't think I could give him a bath in it....I don't know how well they clean them and I'm a freak about that stuff anyways..I won't even walk barefoot in a hotel room so you can see how this bathtub freaks me out...I should of had Tom bring me some cleaning supplies!
Thanks Again for all your prayers.
Hugs and Much Love to all of you.
Kim

Thursday, Oct 12, 2006
Hi Everyone

Well they say all good things must come to an end and that is exactly what happened to us this morning with Scotty's ERT......
Scotty had been receiving his infusion for approx. 1 hour and was sleeping then he woke up. I thought it was because of the noise from the next bed but he couldn't go back to sleep. My mom was with us and went outside to make a phone call and that's when everything started happening. I was watching Scotty and noticed his color was not right so I looked at his feet and hands and they were turning purple and Scotty began to shake I can't remember if the nurse was in there or I had to get her but I said something is definitely not right well then it was becoming pretty obvious....Scotty was completely trembling and his lips were now purple and he was cold and crying and taking very short breaths....the nurse rang that emergency bell and everyone came flying in....they were getting ready to page Scotty's Geneticist across the street but I said he's not there he's at the ASHG meeting but the Resident Geneticist that Dr. Enns had check in on us had just left our room 15 minutes ago while Scotty was sleeping so they paged him back...in the meantime the nurses stopped the infusion and gave Scotty benadryl in his IV and an epinephrine shot it seemed like nothing was happening or at least quick enough for me because I was telling them
he can not breathe Scotty just kept looking at me and I just kept talking to him, we kept putting warm blankets on him and nothing seemed to help his trembling... they gave him some hydrocortisone in his iv and another shot of epinephrine. I kept asking what was his oxygen level and it was very high 97-99 and I said can that be right???? because he can not breath he is not getting oxygen....but it was right.... I WAS THINKING AT THAT MOMENT THAT I WAS NOT PREPARED TO MAKE A DECISION ABOUT TRACHING HIM BECAUSE THAT HAD TO BE NEXT! IT WAS BY FAR THE SCARIEST MOMENT OF MY LIFE! The last thing they gave him was some Zantac in his IV and by then he was slowly getting some color back and his breathing was a little slower. I think it took almost a full hour before he completely stopped trembling. The Res. Geneticist did come back in and then left to page Dr. Enns at his meeting. They decided to not continue the infusion and to keep Scotty at the hospital overnight for observation which was fine with me! I was not going to take any chances of some thing starting at home. Scotty than had a temperature of 101.8 which the nurse said was not unusual after having the shakes like he did.
Unfortunately there were no beds available at that hospital so about 3.5 hours later we were transferred to another hospital that is also ran by UCStanford. Scotty rode in the ambulance with Grandma as I followed with my car closely behind. Tom & Aunt Kelly met us when we arrived at the second hospital that of course was after the ambulance made a wrong turn and got lost in the commuter traffic!
Those of you who have spent any time with Scotty will appreciate this.....as I am wondering to myself if Scotty will be traced and he is struggling to breathe HE WOULD NOT TAKE HIS EYES OFF THE TV BECAUSE DORA WAS ON!

Scotty of course was back to his usual happy self before we left the first hospital but better safe than sorry. It is now 11:59pm and he still is awake, he is the energizer bunny!
We will definitely be premedicating before starting next weeks infusion!
Someone has finally closed his eyes!
Good Night
Kim

Thursday, October 12, 2006
Hi Everyone

Well they say all good things must come to an end and that is exactly what happened to us this morning with Scotty's ERT......
Scotty had been receiving his infusion for approx. 1 hour and was sleeping then he woke up. I thought it was because of the noise from the next bed but he couldn't go back to sleep. My mom was with us and went outside to make a phone call and that's when everything started happening. I was watching Scotty and noticed his color was not right so I looked at his feet and hands and they were turning purple and Scotty began to shake I can't remember if the nurse was in there or I had to get her but I said something is definitely not right well then it was becoming pretty obvious....Scotty was completely trembling and his lips were now purple and he was cold and crying and taking very short breaths....the nurse rang that emergency bell and everyone came flying in....they were getting ready to page Scotty's Geneticist across the street but I said he's not there he's at the ASHG meeting but the Resident Geneticist that Dr. Enns had check in on us had just left our room 15 minutes ago while Scotty was sleeping so they paged him back...in the meantime the nurses stopped the infusion and gave Scotty benadryl in his IV and an epinephrine shot it seemed like nothing was happening or at least quick enough for me because I was telling them
he can not breathe Scotty just kept looking at me and I just kept talking to him, we kept putting warm blankets on him and nothing seemed to help his trembling... they gave him some hydrocortisone in his iv and another shot of epinephrine. I kept asking what was his oxygen level and it was very high 97-99 and I said can that be right???? because he can not breath he is not getting oxygen....but it was right.... I WAS THINKING AT THAT MOMENT THAT I WAS NOT PREPARED TO MAKE A DECISION ABOUT TRACHING HIM BECAUSE THAT HAD TO BE NEXT! IT WAS BY FAR THE SCARIEST MOMENT OF MY LIFE! The last thing they gave him was some Zantac in his IV and by then he was slowly getting some color back and his breathing was a little slower. I think it took almost a full hour before he completely stopped trembling. The Res. Geneticist did come back in and then left to page Dr. Enns at his meeting. They decided to not continue the infusion and to keep Scotty at the hospital overnight for observation which was fine with me! I was not going to take any chances of some thing starting at home. Scotty than had a temperature of 101.8 which the nurse said was not unusual after having the shakes like he did.
Unfortunately there were no beds available at that hospital so about 3.5 hours later we were transferred to another hospital that is also ran by UCStanford. Scotty rode in the ambulance with Grandma as I followed with my car closely behind. Tom & Aunt Kelly met us when we arrived at the second hospital that of course was after the ambulance made a wrong turn and got lost in the commuter traffic!
Those of you who have spent any time with Scotty will appreciate this.....as I am wondering to myself if Scotty will be traced and he is struggling to breathe HE WOULD NOT TAKE HIS EYES OFF THE TV BECAUSE DORA WAS ON!

Scotty of course was back to his usual happy self before we left the first hospital but better safe than sorry. It is now 11:59pm and he still is awake, he is the energizer bunny!
We will definitely be premedicating before starting next weeks infusion!
Someone has finally closed his eyes!
Good Night
Kim

Saturday, October 7, 2006 10:57 AM CDT
Hi Friends and Family

Thought I would do a quick update while Scotty is still sleeping. Last week in general was pretty quiet.. Scotty's infusion went just like the last 3 and that is great! I actually took him myself for the first time which I knew would not be an issue. Tom & I just decided that although the company is great it's pretty unproductive for us to both be there watching Scotty sleep or watching Barney on DVD when one of us could be at home working on "his" honey do list

Scotty was tired being that he was up at 6:00am and I knew he'd sleep because he didn't on the 2.5 hour drive there. I guess he just wanted to keep mommy company since it was just him and I. When Scotty sleeps he likes to sleep on his side but tucks boths his arms under his chest which proved to be very very difficult when he had the IV in one arm and the BP on the other. If one alarm wasn't going off another was! Either the IV line was kinked or the BP wouldn't work because his arm was under him or it was time to increase dosage. I think I had an alarm headache not to mention the little boy next to us crying, pounding on toys or a mom making all her return phone calls during her son's treatment. When we were done I was definitely ready to leave. They were able to cut our flush time by 20-30 minutes by using a smaller dispensing device...I don't know what it is called but they divide the elaprase up in 2 doses so instead of having to flush the full dose they in fact only have to flush the 2nd dose. This worked out very well for us because the 20-30 minutes we saved there sure made a difference of the commuter traffic I hit in the Bay Area! We arrived safely at home around 4:30 where in the past it's usually around 5:15.

The nurses are great there and are always looking for ways to save us time to get us home sooner.

Well I don't know if you remember but on the day of Scotty's 1st infusion we got a call from his One on One Aid from school and he told us that he took another position effective immediately? Well I have been working with his new Teacher & new Principal about how they were going to handle Scotty's Aid situation until the Perm was hired and after our last meeting last week I felt that they really were looking out for Scotty's best interest and that we were all on the same page. Although I did request to be included in the interview process of hiring Scotty's new Permanent Aid and was told it was against the school district's
policy BUT before I could go to the next level with that answer I received an email from Scotty's new teacher saying there was a change in placement and she was taking over Scotty's old teacher's (and one on one Aid) class and that they were coming back to Scotty's class! I was shocked but very relieved at this point. Now Scotty has back his teacher from last year and Sonjay, his Perm. Aid.

I really liked his new teacher but I'm glad that this is one less issue I can now take off my plate! I think it (my plate) is almost clean for the moment!

Hope you're having a great weekend! Thank you for checking up on Scotty. We love you all who care so much about him/us and are truly blessed to have you as friends.

Hugs & Much Love
Kim

Friday, September 29, 2006 0:11 AM CDT

Happy 9th Birthday Scotty! I can't believe my little man is 9 years old where does time go? Mommy and Daddy love you more than anything in the whole wide world!
There is no greater gift that we can give Scotty than what Shire Pharmaceutical has already given us all and that is the ERT.
Because Tom is working this weekend I think we will have his birthday party next weekend and just do something small tonight.

Scotty's infusion yesterday went perfect! My sister Kelly went with us because Tom was suppose to be working (but stayed home sick). She was so excited to go and Scotty loved his Aunt Kelly being there. It is them in the picture here on the homepage. I appreciated Kelly going with us because it really is a very long day but she didn't complain she was just happy that the day had finally come!
Thank You Kelly we love you!
The nurses are 3 for 3 on sticking Scotty on the first try for the IV this makes life so much easier. On the way home Kelly told me that even though the got him on the first stick she was about ready to faint while they were doing it! He was a little upset and that was almost too much for her to handle. Let me tell you she would fainted if it took more than one stick! Although Scotty was very tired during the infusion he just wouldn't sleep so he played with Aunt Kelly and watched movies. The infusion and flush took 4 hours, next week we should be down to 3.5 hours because they are going to use a smaller container that holds the drug which makes the flush quicker.
Today Scotty was awake for Pet Therapy and the dog was a little Scottie Terrier and it was so sweet. Scotty actually petted it. When we were packing up to leave about 4 of the nurses came in and sang Happy Birthday to Scotty! It was so nice of them to do that and Scotty got so shy that he covered his face with his DVD container! They also gave him a Poo-Chi interactive Toy. The staff there is so great. Every week I have taken a treat for the nurses and today for Scotty's birthday I took some cupcakes.
I have to tell you that we have already noticed Scotty's tongue has gotten smaller since starting the ERT!!!!!! After I finish this journal I'm going to look through his pictures to see if I can find some close ups of his mouth/tongue so I can really compare but I know it is smaller! His belly is also smaller but that may be because he was sick Mon., Tues and Wed. and hasn't been eatting much. He weighed 3 pounds less today. Thank goodness he was feeling better and no fever because the will not do the infusion he is sick.
Well I've got to get going so I can get all the treats ready for Scotty's class tomorrow. Thank you for checking up on our Birthday Boy.
Have a great weekend.
Love,
Kim

Friday, September 22, 2006 12:18 AM CDT

Happy Friday Everyone

Well yesterday was Scotty's 2nd infusion and everything went great! He actually slept through two thirds of it and we had to wake him up when it was over. A friend had a suggestion for us about removing the tape off his arm where the iv was (which was the hardest part last week) and that we need to put some baby oil on the tape and let it sit for a few minutes so we tried it and the tape came right off now problem! I also tried it again when we got home because they obviously put a cotton ball on where they pull out the iv and put a bandaid over it and I went to take it off and it was stuck on pretty good so I got out the baby oil and sure enough it came right off! Just a little tip if any of you are experiencing the same problems.
I've been doing some catch up this last week and also trying to get an IEP meeting set up to find out what the school's plan is for coverage of Scotty's one on one Aid while they are trying to hire a permanent one. We went through four months last year of sub Aids before his permanent one was hired and it was just a joke. Basically he had a baby sitter because the Aids were always changing and no one is going to spend the time to learn Scotty's schedule when they know they aren't going to be there that long and I'm not going to accept this happening again. If it's not one thing it's another!
The only thing left to do with Scotty's Make A Wish tub is the floor to be replaced! I think they called yesterday to schedule this and I need to call them back. Everything else has been done and I put a recent picture in the MAW photo album so hopefully you checked it out.

I've put up some new photos of Scotty's first (and 2nd) day of school and a MPS Gathering we attended a couple of weeks ago so be sure to click on photos to see them.
I hope all is well with everyone and want to say Thank You for checking up on Scotty. Have a
Love,
Kim

Friday, September 22, 2006 12:18 AM CDT

Happy Friday Everyone

Well yesterday was Scotty's 2nd infusion and everything went great! He actually slept through two thirds of it and we had to wake him up when it was over. A friend had a suggestion for us about removing the tape off his arm where the iv was (which was the hardest part last week) and that we need to put some baby oil on the tape and let it sit for a few minutes so we tried it and the tape came right off now problem! I also tried it again when we got home because they obviously put a cotton ball on where they pull out the iv and put a bandaid over it and I went to take it off and it was stuck on pretty good so I got out the baby oil and sure enough it came right off! Just a little tip if any of you are experiencing the same problems.
I've been doing some catch up this last week and also trying to get an IEP meeting set up to find out what the school's plan is for coverage of Scotty's one on one Aid while they are trying to hire a permanent one. We went through four months last year of sub Aids before his permanent one was hired and it was just a joke. Basically he had a baby sitter because the Aids were always changing and no one is going to spend the time to learn Scotty's schedule when they know they aren't going to be there that long and I'm not going to accept this happening again. If it's not one thing it's another!
The only thing left to do with Scotty's Make A Wish tub is the floor to be replaced! I think they called yesterday to schedule this and I need to call them back. Everything else has been done and I put a recent picture in the MAW photo album so hopefully you checked it out.

I've put up some new photos of Scotty's first (and 2nd) day of school and a MPS Gathering we attended a couple of weeks ago so be sure to click on photos to see them.
I hope all is well with everyone and want to say Thank You for checking up on Scotty. Have a
Love,
Kim

Friday, September 22, 2006 12:18 AM CDT

Happy Friday Everyone

Well yesterday was Scotty's 2nd infusion and everything went great! He actually slept through two thirds of it and we had to wake him up when it was over. A friend had a suggestion for us about removing the tape off his arm where the iv was (which was the hardest part last week) and that we need to put some baby oil on the tape and let it sit for a few minutes so we tried it and the tape came right off now problem! I also tried it again when we got home because they obviously put a cotton ball on where they pull out the iv and put a bandaid over it and I went to take it off and it was stuck on pretty good so I got out the baby oil and sure enough it came right off! Just a little tip if any of you are experiencing the same problems.
I've been doing some catch up this last week and also trying to get an IEP meeting set up to find out what the school's plan is for coverage of Scotty's one on one Aid while they are trying to hire a permanent one. We went through four months last year of sub Aids before his permanent one was hired and it was just a joke. Basically he had a baby sitter because the Aids were always changing and no one is going to spend the time to learn Scotty's schedule when they know they aren't going to be there that long and I'm not going to accept this happening again. If it's not one thing it's another!
The only thing left to do with Scotty's Make A Wish tub is the floor to be replaced! I think they called yesterday to schedule this and I need to call them back. Everything else has been done and I put a recent picture in the MAW photo album so hopefully you checked it out.

I've put up some new photos of Scotty's first (and 2nd) day of school and a MPS Gathering we attended a couple of weeks ago so be sure to click on photos to see them.
I hope all is well with everyone and want to say Thank You for checking up on Scotty. Have a
Love,
Kim

Tuesday, September 12, 2006 10:32 PM CDT

SCOTTY DID AN AWESOME JOB TODAY WITH HIS FIRST INFUSION! WE ARE SO PROUD OF HIM!
Scotty's Geneticist (Dr. Enns) and Jeff from Shire were both there this morning as Scotty got started and were just as excited as we were to see this first infusion happen!
He was such a big boy and just took everything so well.
He was so content laying in the bed watching his movies.
The nurses were all great and the BEST PART WAS THEY GOT HIM ON THE FIRST STICK FOR THE IV!

The actual infusion took about 3.5 hours then they do a saline wash for about 30 minutes and then we had to stick around for another hour to make sure there was no reaction. It was a very long day and I won't even bore you with the details of the COMMUTER TRAFFIC IN THE BAY AREA because this is just something we are going to have to deal with for the next 12 months so no sense complaining. Being that today was Scotty's first infusion it did take a little longer so next week it shouldn't be quite as long and we will be doing the infusion on Thursday which will be our normal infusion day.

Please say a little extra prayer for Scotty's little friends, Chase, Nathan & Cameron who will be receiving their first infusions also this week. Little Jack from So. CA had his yesterday and he did Awesome! Kraiggy is our veteran he will be on #3 infusion this week!

I have to tell you that Scotty is relaxing right now in his Make A Wish hydrotherapy tub!

Thank you all so much for your love and support. I couldn't of made it here without it.
Hug and Much Love!
Kim, Tom and THE JOY OF OUR LIFE, SCOTTY!

Tuesday, September 12, 2006 10:32 PM CDT

SCOTTY DID AN AWESOME JOB TODAY WITH HIS FIRST INFUSION! WE ARE SO PROUD OF HIM!
Scotty's Geneticist (Dr. Enns) and Jeff from Shire were both there this morning as Scotty got started and were just as excited as we were to see this first infusion happen!
He was such a big boy and just took everything so well.
He was so content laying in the bed watching his movies.
The nurses were all great and the BEST PART WAS THEY GOT HIM ON THE FIRST STICK FOR THE IV!

The actual infusion took about 3.5 hours then they do a saline wash for about 30 minutes and then we had to stick around for another hour to make sure there was no reaction. It was a very long day and I won't even bore you with the details of the COMMUTER TRAFFIC IN THE BAY AREA because this is just something we are going to have to deal with for the next 12 months so no sense complaining. Being that today was Scotty's first infusion it did take a little longer so next week it shouldn't be quite as long and we will be doing the infusion on Thursday which will be our normal infusion day.

Please say a little extra prayer for Scotty's little friends, Chase, Nathan & Cameron who will be receiving their first infusions also this week. Little Jack from So. CA had his yesterday and he did Awesome! Kraiggy is our veteran he will be on #3 infusion this week!

Thank you all so much for your love and support. I couldn't of made it here without it.
Hug and Much Love!
Kim, Tom and THE JOY OF OUR LIFE, SCOTTY!

Tuesday, September 12, 2006 10:32 PM CDT

SCOTTY DID AN AWESOME JOB TODAY WITH HIS FIRST INFUSION! WE ARE SO PROUD OF HIM!
Scotty's Geneticist (Dr. Enns) and Jeff from Shire were both there this morning as Scotty got started and were just as excited as we were to see this first infusion happen!
He was such a big boy and just took everything so well.
He was so content laying in the bed watching his movies.
The nurses were all great and the BEST PART WAS THEY GOT HIM ON THE FIRST STICK FOR THE IV!

The actual infusion took about 3.5 hours then they do a saline wash for about 30 minutes and then we had to stick around for another hour to make sure there was no reaction. It was a very long day and I won't even bore you with the details of the COMMUTER TRAFFIC IN THE BAY AREA because this is just something we are going to have to deal with for the next 12 months so no sense complaining. Being that today was Scotty's first infusion it did take a little longer so next week it shouldn't be quite as long and we will be doing the infusion on Thursday which will be our normal infusion day.

Please say a little extra prayer for Scotty's little friends, Chase, Nathan & Cameron who will be receiving their first infusions also this week. Little Jack from So. CA had his yesterday and he did Awesome! Kraiggy is our veteran he will be on #3 infusion this week!

Thank you all so much for your love and support. I couldn't of made it here without it.
Hug and Much Love!
Kim, Tom and THE JOY OF OUR LIFE, SCOTTY!

Tuesday, September 12, 2006 7:14 AM CDT
IT'S FINALLY HERE, TODAY IS SCOTTY'S FIRST INFUSION!
We've been waiting for this day for years and I just can't believe it is happening today. I slept a couple of hours and that was it. Scotty woke up around 3:00 am and I sat in his room with him for about 5 minutes after he took a
drink of water and he went back to sleep.
Yesterday I was a ball of nerves and today I'm a ball of nerves. Thank you so much to my very best friends who took the time to come down and visit Scotty yesterday bringing him some gifts which we'll be sure to take today.
THANK YOU to my special friends who emailed me and who I spoke with on the phone, you all helped me through an emotional day I wouldn't of made it through yesterday with out your help, understanding and most of all LOVE!
Please keep Scotty is your prayers today and I will be back later to update you and post some pictures!
Love to all of you
Kim, Tom and OUR SPECIAL LITTLE SCOTTY MAN!

Sunday, September 10, 2006 7:35 PM CDT
Hi Everyone

Well this is going to be pretty short update because not a whole bunch happened around here last week. Scotty is still enjoying school and is getting back into the swing of his routine meaning he's not as tired when he gets home therefore doesn't need his nap which is nice because he goes to bed sooner or not as late!

We are really getting excited about his first Infusion on Tuesday and I have some things to do tomorrow to get ready for it. There have been a couple of our little friends who have had their first infusion and everything has gone great! Just keep us in your thoughts and prayers that it goes that easy for us! I will be back for sure Tuesday evening to update this journal to let everyone know how it went!
Thank you for checking up on Scotty.
Hugs
Kim

Thursday, August 31, 2006 9:07 AM CDT
SCHOOL UPDATE August 31st. Scotty has been doing great this first week of school! Tom & I took him to school and picked him up on his first day and they said he had a great day. He took a very long nap when he got home!

Scotty's been riding the bus since Tuesday and what's really great is that it is the same driver picking him up and bringing him home! He's doing fine riding the bus.
I am going to try and put up new pictures today but if you see this blurb I haven't done it yet!

Friday, August 25th
Hi Everyone

I can't believe it's been almost a month since we attended our MPS Conference! I can't believe Scotty goes back to school on Monday! This summer is over and I don't know where it went. I guess we have just been consumed by the delay of the ERT and then the approval of the ERT. We are almost ready for Scotty's first infusion something that we have been waiting for since we met with the Doctors when Scotty was first diagnosed at 18 months. We got final approval from our Insurance Co. last week that they will be covering the infusions. The monthly bill that our Ins. will be paying is beyond unbelievable! Fortunately this will be covered under "pharmaceutical" and not medical through our Ins. therefore there is no lifetime cap. Most people never have to worry or even know what their medical Ins. cap is some may be a million dollars which you think is a lot but to put it in perspective we could reach that in 3 years with Scotty's treatments! So we are very thankful for our Insurance.
The Infusion Center at Stanford Hospital where Scotty will be getting his infusions was trained by the Pharmaceutical Co. who fabricated the drug yesterday which needed to be done before wew could schedule our first infusion date. With this being done I am hoping to hear today that Scotty's first infusion will be next Thursday! I will keep you posted about the first infusion date.

A couple of weeks ago Scotty had 4 Doctor appointments at Stanford. These were his first visit with these new Doctors. We saw a Neurologist, Cardiologist, Orthopedist and a dentist. It was a very long day but Scotty has always been a trooper when it comes to Dr. appointments as long as we have his portable dvd player.
He was so relaxed (as was daddy apparently) that while the EKG was being done Scotty & Daddy who were both up on the table dozed off! What kid sleeps through a EKG? that would be mine. It was only for a couple of minutes because he was watching one of his favorite movies (Tarzan). I was very happy with all the Doctors except the Ortho. Scotty has not shown any progression since his last tests. Actually he improved in a couple of areas...We met with the cardiologist after the ekg & eeg were done and he came in saying that he didn't feel they got a good reading on the ekg and wanted to redo it so he and his resident Dr. left and we were packing things back up to go do the ekg and in my mind I'm beginning to think ok this is where it all starts to go downhill we have been so lucky with Scotty's minimal and I mean minimal medical issues. .. this is the beginning of the end they are seeing something really wrong with Scotty's heart and want to look again. I knew there was nothing wrong with the test itself because Scotty was so cooperative so it has to be something they are seeing!!!!! It was a couple more minutes which for me it completely seemed like a lifetime when they all came back in the room and announced No we don't need to do another test the one we did was fine. He went on to explain that on Scotty's previous EKG done at UNC they noted that they saw "moderate" mitral regurgiation and the new Dr. felt what they saw was "mild" and after looking at their EKG again they were sticking to the "mild" which was great! Wow that was a great relief! Back to the Ortho.. my concern with Scotty right now is the possibility of Carpal Tunnel Syndrome so in our appointment with the Neurologist earlier she said bring this issue up with the Ortho. I did and he asked if we were seeing any symptoms and I said no but that's the problem with the MPS kids is it is not uncommon at all to not see any of the "classic symptoms".. I even had my MPS booklet which clearly stated what I was telling him but he didn't want to read it....the book also states in that if the Dr. is not willing to test for CTS be persistant with them or find a new Dr. who will test. Regardless the Dr. said he would not test without Scotty showing symptoms and even if we did test we all know that the test would show CTS and then what??????? and then what I'm thinking we fix it but he said he would not do surgery. It was pretty much at that time I decided I'm not arguing with this guy any longer....we will just find a new Doctor. I'm not staying with a Dr.that on the first visit I have to convince to look at the big picture of MPS we'll just cut our losses now and be happy that we only wasted time on one visit rather than finding out later on down the road what a stupid Dr. he is! I need every one of these Doctors on board and looking "outside" of the box I don't have time for the others. Oh I also wanted to tell you that thanks to a friend bringing it up to me that our Regional Center will be reimbursing us "travel expense" for our weekly infusion trips which is 180 miles round trip! They pay I think .25 per mile which covers our gas expense! We were figuring about an extra $200.00 a month for gas traveling to the infusions.
On that note I wanted to tell you that I just got my first paychecks from In Home Supportive Services! Momma's going shopping! I'm just kidding the 7 checks (they paid me back pay from May!)are still in my drawer. I will keep them separate and use to pay for all Scotty's vitamins/supplements. For those of you who may have missed hearing about my job (please look at my journal history) I am employed by SCOTTY through a State program. We were approved on a medical waiver so all of you I hope you're checking to see if you're over qualified for medi-cal/medi-caid ask about the waivers available.
The next week should be very interesting and I will keep every updated. Little Scotty man starts school on Monday. We meet with his new teacher, his old teacher, S.E.program Mgr., Scotty's Aid, the school nurse, Scotty's coordinator from Regional Ctr and her trainee, the only person missing was the school's new Principal who was sick yesterday for a quick meeting. They wanted some more info on the ERT which will reduce his school week down to 4 days most of this school year and we wanted to meet the new teacher. She seems very nice and she asked a lot of questions which was nice to see. I'm sure with that many people we freaked her out but it all went good.
I'm looking forward to this weekend I'm not sure why maybe that the tub will be done and to catch up on some sleep! Tom worked 9 straight nights of 6:00pm to 6:00am his normal schedule is 7 nights so the other 2 were o.t. and I sure felt it! Scotty just wasn't sleeping well or even going to sleep so there were a couple of nights he & I were watching tv at 2 & 3 in the morning! This is why I visit some of my friends caringbridge sites so early in the morning! Actually Tom is leaving early Sunday morning to go help our friends do some construction work (I know Tom and a hammer...hmmmm..maybe they'll be installing a jet engine somewhere in the house??lol) on a house they are turning into a playhouse for their two MPS III daughters. Tom is really looking forward to helping and I know they are looking forward to the help. I think he will come home on Tuesday then back to work on Wednesday.
Well I know this is long and I will stop here. I hope you all have a great weekend and THANK YOU for checking up on Scotty man, the sunshine of my life!
Hugs,
Kim

Monday, August 7, 2006 1:05 PM CDT
Hi Everyone!

Sorry it has been so long since I have updated Scotty's journal but it just has been crazy since FDA approved the ERT. Of course we had to leave for the MPS Conference two days after the FDA Approval announcment which at first I was questioning whether I should be going to the Conference or staying home and working on what needed to be done to get
Scotty his infusions ASAP! Then I decided that as long as I had my laptop and my cell phone I could work on it from the Conference.

. So early Wednesday morning Tom,Scotty, myself and one of my very best friends headed out for the San Francisco Airport. We had 2 fairly quick flights that were a little over 2 hours each and Scotty did great. The first flight he was so into the TV monitors behind everyones headrest we didn't even have to get out his portable DVD player and on the 2nd flight he was asleep before taketoff!

We flew into Dayton, OH and drove 50 miles or so to Covington, KY. . We saved about $225.00 PER TICKET flying into Dayton and the 50 miles was an easy drive. We finally got to the Hotel that evening I think around 8:00 or 8:30. We found some friends and then went to their room and visited for a while. I think there were 10-13 people in there at one point but it was so much fun just visiting & laughing with everyone.
Now I have to back up here a little and explain to you that we've always had a great time at the Conferences and I had no doubt that this one was going to be even better because of the FDA Approval. I knew the MPS Society was not going to let the Approval over shadow the Conference either out of respect for the other families. Although everyone would be excited about the approval they also traveled long distances to learn as much as they could in the short time that we had and visit with their old and new friends.
On Thursday night after our registration and Welcome dinner we attended our breakout session which is where all families with MPS II meet and just discuss every day issues and how we deal with them or people ask for suggestions about medical treatment just whatever we want to talk about. Towards the end of the meeting the discussion turned to the the ERT Approval. It was at this point that everything became very emotional and the discussion got a little heated with parents questioning other parents why they were pursuing the treatment for their child because either age or the amount of damage the disease had already caused them why put their child through this? It didn't take long before people recognized what was going on and were soon apologizing for questioning anyone's decision and that wasn't their intent which I believe it's just hard to keep emotions intact sometime. I finally just couldn't bare listening anymore..listening to the reality of it all that the ERT is NOT a cure it's just a treatment to hopefully stop the progression or at least slow it down and that is just for the physical part of these little guys bodies.. We have always known that the Enzyme from the ERT does not cross the blood brain barrier on our children so neurologically the progression will continue but I have great faith that if I can keep Scotty feeling better physically and continue with the Genistein and all his supplements that somebody will find something to cross the BBB.
So I needed to get Scotty out of child care and just went back to our room but Tom & my friend Sherri stayed in the meeting which continued for at least another hour to hour and a half. I just couldn't listen anymore and had a headache! I was suppose to meeting up with all the MPS moms after we all put our kids(and husbands)to bed so we could visit but Tom was still in the meeting and now I had a headache so I just went back to my room but I was able to get a hold of my friend another MPS II mom who I finally got to meet in person earlier that day! It was great we've been talking a couple of years and to meet and visit was so much fun, we really had a great time. There were several other emotional times during the Conference (too many too list) more than I have experienced at any other Conference but the best part was I had one of my best friends with me who took time out of her life, her families life to be with us and learn more about MPS and I will forever be grateful to her attending with us. We had a great time, Scotty was a complete Angel and just seeing all my MPS friends (old & new)who are truly my family was the best part ever! I also missed not seeing quite a few of my good friends who were not able to attend but I know you all were there in spirit and will be attending our next Conference in March in Washington, D.C.!
Quickly I will tell you that the Conference ended Saturday night after the Gala Dinner after seeing most of my friends leave on Sunday morning we packed up everything and headed out to the Aquarium which was great. We then drove back to Dayton had some dinner and went to bed. Monday morning we got up got packed up and as promised we went with Tom to the largest Air Force Museum. It was 3 large (and spotless)airplane hangars full of airplanes. I can't even tell you how many airplanes we saw but it was alot! Our flights back were very uneventful (well except that one time when Tom had to take Scotty to the airplane restroom which as you all know are very small so that isn't something Tom cares to repeat anytime soon!
To view photos of our trip to the MPS conference There was also a professional photographer that was there all weekend taking pictures of all the kids and they are so great you can check those out also just
Thank you all so much for your love, support and prayers.
Kim

Monday, August 7, 2006 1:05 PM CDT
Hi Everyone!

Sorry it has been so long since I have updated Scotty's journal but it just has been crazy since FDA approved the ERT. Of course we had to leave for the MPS Conference two days after the FDA Approval which at first I was questioning whether I should be going to the Conference or staying home and working on what needed to be done to get
Scotty his infusions ASAP! Well I figured that as long as I had my laptop and my cell phone I could work on it from the Conference.

If you are reading this sentence I still have more to journal but may have been momentarily distracted by Scotty so check back soon!

Thursday, July 20, 2006 10:17 PM CDT

Hi Everyone

I hope you are all doing well and enjoying your summer!
Scotty's been done with summer school since Monday and unfortunately we haven't really left the house too much! It is just way too hot to go outside and do anything even early in the morning. We were hoping to at least get out and see some movies (because we all know how cold theaters are) but we were told the Make A Wish bathtub was to be delivered on Wednesday so I didn't want to leave in case they actually tried to deliver it but of course Wednesday came and went, as did Thursday so we are not hanging out here all day tomorrow waiting for that tub! Had the tub showed up on Wednesday the Contractor wanted to install it Friday but I know that's not going to happen and at this point I don't know when it will! We are leaving early Wednesday morning for Kentucky for the MPS Family Conference and I know I don't want them trying to install it on Monday or Tuesday as we are trying to get everything in order for the trip. I'm thinking they are just going to have to wait till we get home I mean we have been working on this "Make A Wish" wish since last December so a couple extra weeks will not hurt.

I'm getting so excited about seeing my friends in Kentucky! I can't wait to see them and their kids. The meetings during the conference are informative and there will be some great Guest Speakers. Shire Pharmaceutical will also be holding an Open House on Thursday at the Conference so it will be nice to attend that and hopefully get some answers about the FDA Approval of the ERT.
Most importantly I'm going to REALLY MISS not seeing some of my closet friends and their families who will not be attending the conference this year, I know you all will be there in spirit but it just won't be the same.

Well I have to tell you all that I am now employed! Yep I got a job and my employer is Scott Whitecotton! (talk about one cute boss ). Another MPS mom had told me about this program almost a year ago and I immediately began researching it. The name of this program is "In Home Supportive Services" (IHSS) and basically how it works is like this...because of Scotty's diagnosis of MPS II he would qualify to be "Institutionalized" which the State would pay for so instead of him being placed somewhere that the State would pay for his care they are now paying ME to be his Care Provider which is a heck of a lot cheaper for the State! It has taken a while to get this through but I stuck with it through... lost papers, waiting for calls back from several different County employees, etc. There was this one time I even had to tell the Intake Caller of IHSS the guidelines. She kept telling me that Scotty wasn't eligible for this program because our income exceeded the limit but I explained to her that Scotty had been approved for a Special Waiver because of his diagnosis and our income/assests were not a factor at all. In fact with this waiver we could win the lotto tomorrow and Scotty would still be eligible for this program. So luckily for me someone was hearing her side of the phone conversation and got her attention and told her she was wrong and that I was correct! I know I have been researching programs like this for my friends in other states and they all vary but I want to tell everyone that even though you may be denied for SS or Medi-Caid please research the Waivers available for your state! They all have them and nobody ever seems to tell you about them but go online yourself and do your research!

Thank you all so much for checking up on our Scotty man. We appreciate all your thoughts and prayers so much.
Please take care and have a wonderful weekend.

Hugs & Much Love

Kim, Tom & Scotty

Friday, July 14, 2006 4:36 PM CDT

Hi everyone and Happy Friday!

First of all I would like to Thank all of you for taking the time to check in on our little Scotty man! We are so blessed to have so many wonderful friends.

Scotty has been doing great! He has been attending summer school for the last month in the morning from 8:30 to 12:30 this coming Monday will be his last day. He really enjoyed going and it was wonderful that he had his same one on one Aid from his regular school year who will also be his one on one this coming year. I'm sure Scotty's going to miss seeing him when summer schools over.

Well I have to say I think it was a pretty productive week for me even though we were gone the first 2 days of it! On the spur of the moment last Thursday we decided to head over to our favorite place on the Coast (Pismo Beach)

Tom went to get our trailer out of storage Thursday and we headed out Friday morning. We had planned on coming home Monday but it was so nice we decided to stay one more day and got home Tuesday night. We had a great time! We meet a really nice couple whose trailer was next to ours and ended up spending a lot of time with them. I really miss them but we exchanged info so I plan to keep in touch. Scotty had a lot of fun at the beach hanging out with mommy, daddy & Coco (dog) and chasing the seagulls!

We were really amazed at how active Scotty was on the beach this trip. Normally he gets up and chases seagulls for a short distance but this time he was up and running all over the place! He really kept daddy on his toes. What was really amazing was how he was able to run through the very soft sand on the beach! There is a swing and slide on the beach right where you come off the walkway and one time he ran up there (we are way down by the water) so Tom thought he wanted to play on the slide but actually he was heading off the beach and back to the trailer which is quite a walk away! It was pretty funny, Tom had to catch up with him quickly and carry him back down to where we were sitting. I really believe the reason he was so active on the beach this trip is the Fish Oil and Flaxseed Oil we have been giving him for the last 3 months along with all his other supplements. I'm telling you we have seen the difference in Scotty!

When we got home from our trip Scotty went back to summer school, Tom went back to work and I decided that I just needed to buckle down and take care of scheduling Scotty's 6 Doctor appointments myself. These appts are to meet the new Doctors for initial consultation and get some of his annual tests done. There was a coordinator at the hospital who was suppose to be doing this and she really dropped the ball so I knew I just had to do it and I DID! I was able to schedule 4 out of the 6 appointments on one day (8/9) and the other 2 that I couldn't get appointments for on 8/9 have been scheduled but also put on a list to call me if they had any cancellations on 8/9 and could squeeze us in. I also emailed the Doctor to see if he had any pull with these other 2 Doctors to get the appointments on 8/9. Some may think that's too many appts in one day but Scotty is an absolute trooper as long as we have his portable DVD player. Since most of the appts are consultations that's even easier. So I am so excited to have that done and over with!

Well we only have a couple of more weeks and then we are heading to the Annual MPS Society Conference in Kentucky! One of my closest friends will be going with us and I can't tell you how much that means to me. To care so much to use your vacation time from work, not to mention the cost is pretty overwhelming. She has attended another MPS function with Scotty & I before so I know emotionally she will be able to handle seeing the kids because for some it is a little overwhelming. I'm just so excited she'll be there with us.
I can't wait to see my MPS friends (actually they really are family). I have some new friends that I haven't met in person yet who will be attending and I can't wait to see them and their beautiful children!

I hope you all have a great weekend.
Hugs,
Kim & Scotty

Friday, July 14, 2006 4:36 PM CDT

Hi everyone and Happy Friday!

Well I have to say I think it was a pretty productive week for me even though we were gone the first 3 days of it!
On the spur of the moment last Thursday we decided to head over to our favorite place on the Coast (Pismo Beach)

Monday, July 3, 2006 8:45 PM CDT

Hi Everyone

Not too much has been going on around here (which I guess is a good thing!). Scotty is doing great and is off from summer school today and tomorrow for the 4th of July holiday. I hope you all have a great and safe 4th of July!

Hugs,
Kim & Scotty

Friday, June 23, 2006 11:56 PM CDT

Happy Friday Friends!!!

Scotty has made a full recovery and is back to his very happy self! He started his first day of summer school on Tuesday. His class is wonderful, his teacher is one of his temporary one on one Aids from his classroom last year, he has his same permanent One on One (Sonjay) with him, another Aid in the class is an Aid from his regular class and the Summer school Principal is his teacher from his regular class so Scotty feels pretty much at home and didn't have to do much adjusting. Today they had a Fire Truck at school which all the kids loved!

Not much more than that happened this week. I have to tell you that it is suppose to be 108 - 110 degrees this weekend so my plans are to stay inside with the A/C and work on a scrapbook for a friend. Maybe Scotty & I will venture out to a movie because you know it's always cold in the theather! Tom is taking his jeep (and the dog) four-wheeling on Saturday with a couple of friends from work who also have jeeps. Sounds like a lot of fun to me especially in this heat, NOT!

Oh that does remind that we had to take our dog (Coco) into the vet for her severe skin allergy which always happens at this time of the year! Get this, she also had an ear infection! Well she is doing much better of course that's after a $200 vet bill!

I hope you all have a great weekend and Thank You so much for checking in on our little Scotty man. We appreciate all your prayers.
Kim

Friday, June 23, 2006 11:56 PM CDT

Happy Friday Friends!!!

Scotty has made a full recovery and is back to his very happy self! He started his first day of summer school on Tuesday. His class is wonderful, his teacher is one of his temporary one on one Aids from his classroom last year, he has his same permanent One on One (Sonjay) with him, another Aid in the class is an Aid from his regular

Tuesday, June 20, 2006 11:50 AM CDT

Yesterday we took Scotty to see his ENT, we took along the x-rays they took at the hospital on Friday so he could take a look at them and he saw absolutely nothing. He also felt the shadow that was on the x-ray of the throat was just that a "shadow". He looked up the results of Scotty's blood draw and it was not positive for Whooping cough and his white blood cell count was just fine. So the Doctor looked in Scotty's throat, up his nose and in his ears (boy was that fun) and saw nothing except the ear infection in the left ear. He felt that this ear infection most certainly could be causing Scotty's pain when he coughs and sneezes. As many ear infections as Scotty has had in the past I have never seen him act this way but we'll do the drops and see what happens! Boy this was one expensive (for the Insurance Co.) ear infection!

I didn't send Scotty to his first day of summer school yesterday because again he wasn't feeling well but this morning he did seem better and knowing that he will have his same one on one Aid from school I felt better sending him today. His Aid knows Scotty's moods very well and will give me a call if something just doesn't seem right.

I hope you all enjoyed your Father's Day. Scotty's daddy worked a 12 hour day shift and Scotty really didn't feel well so we just stayed home.
Thank You all for checking in on him and pray that he gets over this ear infection and gets back to his very happy self! He was dancing in front of the mirror this morning so hopefully he's on the mend!

I have a DVD of Scotty's photo shoot!
As soon as I can figure out how to get them out of a PDF File I will post some. They are beautiful!

Tuesday, June 20, 2006 11:50 AM CDT

Friday, June 16, 2006

Friday, June 16, 2006

Scotty's ENT nurse called me back first thing this morning and I asked about getting Scotty in today to see him and she said he was out all week and wouldn't be back until Monday. I asked why didn't the lady tell me that yesterday?! She didn't know and said she was sorry and we went ahead and made Scotty an appointment for Monday. I called Scotty's Pediatrician to let her know the ENT was out until Monday so she must of called and consulted with another ENT about Scotty and they came to the same conclusion that to be safe and rule out any foreign object being lodged in Scotty's airway we needed to get some x-rays. Long story short the only place to get the x-rays unfortunately was the ER and we thought the Dr. there may also be able to get a better look in Scotty's throat and in his nose. So I got everything together including our lifesaver which is Scotty's portable DVD player and headed out. I called Tom to let him know we were going to the ER but not for an emergency just to get xrays and that I could handle that by myself and I would call him later. Luckily my friend's husband knew we were going so he stopped by the ER and ended up spending the whole day there with us which was great because I did need a second set of hands when they were taking Scotty's xrays (Thank You Greggie!). So when looking over the xrays of throat, sinus and chest there was no sign of a foreign object but they did see a very light shadow in his throat. The Dr. wasn't sure if this was just "a shadow" or could be just possibably some flem sitting there that Scotty has been bringing up during his coughing spells?????? The Dr. began talking about sedating Scotty to look further which I wasn't too happy about especially if this just ended up being a shadow so I suggested doing another Xray right then befor sedating and consulting with his Pediatrician. The Dr. made a suggestion of letting Scotty finish his round of antibiotic which would be Monday and then taking a new xray which sounded better to me and his pediatrician agreed as long as Scotty was not having a problem eatting which he isn't. He doesn't have his normal appetite but he is definitely not in pain when swallowing. That was a nice 6 hours of our day but Scotty was great! He just laid in his bed and watched his movie but there was a time he wasn't very happy when the Dr. looked up his nose with his little tool Scotty jerked his head as he was pulling out the tool and caused Scotty's nose to bleed! We never could look in Scotty's throat! With his larger tongue he just will not let a Dr. put the tongue depressor in his mouth, he is just way too strong and we can't hold him down to look!

Today is Scotty's grandma's (my moms) birthday and we wanted to wish her a Happy Birthday!

Thursday, June 15, 20006

Well my little Scotty man is not feeling well. We were visiting some friends the other night and out of the blue he had a coughing episode and he became very scared which scared me because this had never happened before so immediately we left to come home. On the drive home he coughed up some flem and when we got home he instantly went to sleep. I thought maybe this was a one time thing because of the flem but it happened again the next morning so I called his pediatrician and after describing to her what was happening she thought it might be the Whooping Cough because it is going around Modesto. We decided I'd keep a close eye on him and if it continued to call her right away. It wasn't until the next morning it happened again so I called and we got in to see her yesterday. I told her I had looked up Whooping cough on the web and it sounded exactly like what was happening to Scotty, the website even had sound bites of children with Whooping cough coughing! Which again sounded like Scotty. During her examination she also saw that Scotty's right ear was infected. She went a head and put him on antibiotics then sent us to the lab to have a blood draw to confirm (or not) the Whooping Cough. Of course we will not have the results back from that for 3-5 days but with Scotty already being on antibiotics we'll just hang out at home because you need to be on the antibiotics for 5 days to no longer be considered contagious which works out to be the day before summer school starts!
I talked with Scotty's pediatrician this afternoon and she suggested that I call Scotty's ENT to get him in to see him also. I called and he was out today for Surgery so I left a message for him or his nurse to call me back tomorrow morning. Scotty's Pediatrician called back early evening to see if we got the appointment with ENT and I said they were out but were suppose to call me in the morning.

Saturday, June 3, 2006 6:07 PM CDT

Well we've been pretty busy since my last journal entry. Last weekend was Memorial Weekend and we we worked in the yards and Tom did some honey do's around the house. While we were working in the backyard Scotty wanted in the spa and I think he stayed in it at least 2 hours! The spa is right there where we were working so we were able to keep an eye on him but he has his special corner in the spa and really doesn't leave it. Of course by the time I was ready to get in it I think Scotty was already in bed so I got a nice peaceful spa by myself. On Sunday we had some friends over for a barbacue which was a lot of fun. Our friends have older children (20,21 &23) but the kids still enjoy hanging out with their parents so they also came over for the barbacue which Scotty just loved! Scotty was in heaven hanging out with Mike on the couch watching movies. Scotty has to make sure he knows what's going on so he would come out on the patio with us and sit on his bench and then run back in to watch his movie! It was pretty cute to watch. Oh I forgot that on Friday night my sisters Kelly & Cathy and Kelly's husband Bill came over so
Scotty got to visit with his Aunties & Uncle which he enjoys very much. On Monday Tom and I just finished up working in the yard which was about 9:00 pm!
The rest of my week was pretty much consumed with trying to coordinate Scotty's 6 appointments at UCStanford! These are just annual checkups but it will be the first time with these new Doctors and I have to be honest at this point I'm not quite sure what I am going to do. I thought by having all the Doctors in one location would be easier and the Genetics Counselor could help me coordinate these appointments but with every office that calls to schedule the appointment I am running into road blocks and these are road blocks that I had hoped would of been cleared up prior to them calling for appointments. I was talking with a friend (another MPS mom)last night and explaining to her what I had been going through and then I proceeded to tell her what my dream scenario would of been with these doctor appointments which was (is) that after we met with the Geneticist and decided we would have Scotty followed by him at UCStanford that we would again meet and this time include all the other Doctors (Pulmonologist, Neuro, Cardiologist,Othopedist, Audiologist & Dentist)to discuss Scotty's care and the importance of everyone's flexibility to accommodate the multiple procedures that needed to be done under sedation to be done together. Ok, so my friend laughed!!!!! (and so did I) I know it is just a dream but I told her I know that there are some MPS families out there that do have this "dream team" of doctors!!! I just may never be one of them!!!!!!!!! I still don't know what I am going to do but I will keep you posted!! I had such a headache at the end of the week that I wasn't even in the mood to go to the Zoo with my friend Alicia and her family Friday night! Sacramento Zoo had closed the Zoo from 5:30pm to 8:00 pm for Special Needs children. I know it would of been fun but I was pretty mentally drained not to mention the fact that we had to go to Verizon earlier that day to replace my broken cell phone. Going to one of those phone stores here is now like going to DMV or the Post Office! We were there for over an hour and it wasn't that busy! This coming week is also going to be hectic because now I have to find some new tile for the bathroom that Scotty's new tub is going into because they have to remove the old tile surrounding the exisiting tub. I'm really not good shopping under pressure. I have about 2.5 days to do this while Scotty is in school and also work on these Doctor appointments attend a Graduation out of town and have a barbacue for Scotty's class at our house on Thursday! Contractor here Friday morning to begin removing tile and tub! Wish me luck!
Thank you all for checking up on Scotty.

This coming week is Scotty's last week of school. They have been doing a lot of field trips lately. Last Wednesday they went to the movies and the week before they walked with
the 6th grade class to a park and had a picnic. I invited his class to come to our house for a field trip so that will be next Thursday. Scotty has a lot of fun outdoor toys they can play with and we'll be barbacuing hot dogs and hamburgers. It should be a lot of fun.

All of our little friends need your prayers but the ones below need your extra prayers right now. Feel free to visit their websites and let them know you are praying for them, they would love to hear from you.

Bryan
Chase
Kaylee

Saturday, June 3, 2006 6:05 PM CDT

Tuesday, May 23, 2006 10:58 PM CDT

Well last week was a very long week!!!!!!!!!!!!!!!!!! Unfortunately Wednesday we got word that Shire Pharmacuetical released a Press Release that stated the FDA had stated they would need 90 more days to review the
ERT Trials!!!! Therefore we will not have an answer on May 25th as we had hoped! That was a pretty big blow when we've been waiting almost 6 months for their answer and to be so close only to come down to them needing more time! I almost wished they hadn't agreed to the 6 month review that got our hopes up so high. Although I have heard more than once they hope to have this done in more like 45 days I think I will just stick with the worse case senario of 90 days so I'm not disappointed again. 90 days doesn't seem like a long time when we have been actually waiting years for the approval of these Trials but there are a lot of our little MPS II friends that each day that goes by they are progressing and their health is getting worse and time is so very important. So please keep them all in your Thoughts and Prayers and pray that the FDA can get this approved as soon as possible for them.

On a happier note last Saturday was the MPS Family Meeting that I have been helping Shire Pharmaceutical with.
It was a great success! It was so wonderful meeting some new families and
seeing some of the families I have already met! I put pictures from the meeting in our photo album that you can access at the bottom of this page.

Scotty has been doing great! Our Insurance has approved the 6 referrals that were sent in so that means we'll be making some appointments with the Doctors at UCStanford for consultation.
Hopefully we can fit as many appointments into one day as possible. Scotty is pretty good about that and doesn't get stressed when he has several appointments in one day. As long as we have his portable DVD player he's as happy as can be!
Thank You for stopping by and checking up on our little Scotty man.It really means a lot to us.
Have a safe and great Memorial weekend!

Saturday, May 13, 2006 5:11 AM CDT
Hi Everyone!

I have no idea where this week went?! It just seems like it was Monday and here it is Friday night! Scotty had a great week at school and at home. He went for a check up with his ENT last Friday and everything looked good. The Dr. could see both his ear tubes. I knew there was a little bit of fluid in his right ear and wanted the Dr. to check it out, of course he saw just a tiny bit but decided since we were there that he would use his handy dandy tool and suck the fluid out.Well I really wasn't prepared for that otherwise daddy would of taken him to the Dr. because if there is one thing Scotty hates it's having fluid sucked out of his ear! I don't know where he gets the strenght but it took me and 2 of the Dr.'s assistants to hold him and we still didn't do a good job but he got the fluid out and Scotty couldn't get out of that office fast enought! He shook the doctor's hand (as he always does) and told me "com on"!
It was a very productive week for me. I finally got Scotty approved for Medi-Cal! I have been working on this since last October when I had asked Scotty's Service Coordinator at the Regional Center that I wanted to apply for a progrom called IHSS ((In Home Supportive Services)but I need to be approved for Medi-Cal first. I knew we were over the income limit for Medi-Cal but also knew I could apply for a special waiver (Institutionally Deemed Waiver) for Scotty because of his Diagnosis. So we got Medi-Cal approval and then last Thursday Scotty's Case Worker came over and went over the application to apply for the IHSS. Now I have to wait for the Social Worker to call me and set up a time when she will come over and we'll sit down and figure out how many hours per month they will pay me to be Scotty's caregiver. Hopefully this will be happening soon. I had also requested last week or the week before that our Health Insurance provider assign us a Case Worker for Scotty. Personally I have never needed to speak with out Insurance but Scotty's Pediatrician and I felt it would be a good idea to get a CW for him with all the new changes coming up (ERT). Between UCStanford and Scotty's pediatrician they had requested 6 referrals for various tests and procedures last week. I am really trying to push them to do Scotty's port under the next sedation which I hope to be before the ERT approval. We'll see how that goes!
Well I'm going to finish this update in the morning.
I do want to wish all my friends and family a very Happy Mother's Day!

Saturday, April 29, 2006 4:15 PM CDT
Hello Everyone

Sorry it has been a little while since I've updated! Especially since you're probably wondering how Scotty's Photo Shoot for Shire went?
Well we headed for San Diego the day before Easter and I think it rained all the way to LA. Hoping to escape our rain here in the valley I was beginning to get depressed thinking that the wonderful rainy weather we thought we left behind may in fact be following us to San Diego!
Well fortunately for us it did stop in LA and by the time we got to San Diego Saturday afternoon the sun was shining!
Scotty was so excited to see his cousins Sarah and Ally as they were to see him (even though their other cousins from No. CA just left from their week long visit with them about a hour before we arrived!) Easter was great, the kids found their baskets that the Easter Bunny left for them and then after the wonderful breakfast
my brother cooked they hunted Easter Eggs. Scotty found a few then decided it was much easier to watch one of his movies! We headed to the beach after a little while and hung out there for a hour and a half. It was nice and sunny but a little windy. We had a great Easter dinner and then we all kicked back and relaxed for the rest of the evening. On Monday my sister-in-law Wendy wanted to get Sarah and Ally's hair cut so I decided I would have them just trim up Scotty's and boy was that a mistake! Daddy usually takes him for his hair cuts and after this one he can continue taking him because it was a battle! I'm not sure why maybe he just wasn't use to this shop but he was not happy and made sure we all knew it! I was happy to leave there as I'm sure they were happy to see us go! We went shopping for a couple of hours to get the girls a couple of new outfits for the photo shoot with Scotty. We (THE GIRLS) found some really cute outfits and they looked so cute with them on. We had to head back to the house because the group who was doing the photo shoot wanted to stop by that afternoon after they arrived (4 flew in from Cambridge, MA)to see if they wanted to shoot at the house or a different location. They all arrived and after talking and meeting with Scotty we decided it would be best if they took the pictures at a different location because we thought Scotty would get distracted at the house and want to watch his movies. We told them about this beautiful park in Del Mar that was right above the beach and actually the Photographer knew of this park and had the same idea.

Click here to see the park. We decided to meet at the park the next morning at 9:30 a.m. The weather was absolutely perfect so we headed down the hill to the beach and took pictures down there for a good 2 hours and then walked back up the hill and took some great pictures of the kids sitting on the bench (where man in standing in picture). At the top of the photo of the park there is a picnic beach and we stopped and ate lunch here. One of the assistants had taken our orders for one of the local restaurants then went and picked up the food and brought it back to the park where they could take some more photos of the kids eatting lunch. I think we finally left that location at about 1:30 and decided to head to another park that was close to my brother's house. Again this was another beautiful park and they took some pictures of the kids playing with balloons, a kite and playing on the slide. During this whole time Scotty and his cousins were so good! Once in a while they would lose focus but that's only natural and once redirected they were great. I forgot to mention that upon arriving at the beach the group pulled out this whole bag of toys that they purchased at home and brought with them on the flight for the kids to use as props! We decided after we left the second park (around 3:00pm)that we would take the kids home and let them rest (hopefully nap)and then we were going to meet the group back at their beautiful hotel (Hyatt in Torey Pines) and maybe get some more photos of the kids in the spa and pool. We got to their hotel around 6:00 pm and of course Scotty could not get his clothes off fast enough to get into the spa and the girls headed for the pool. They got a few more photos of them but I think at this time they may of been getting a little tired of the camera. They purchased us all dinner and drinks and we just hung out and enjoyed one awesome view of the grounds (golf course right above the ocean). We had such a great time and I can not say enough how wonderful everyone was with the kids especially knowing when not to push them and give them some space. I can wait to see the photos! I saw a layout of photos they took of another MPS II boy and they were so beautiful. They did them all in black and white and it was just awesome! When I get to see them I will let you know how they turned out and hopefully I will get to post some!

Since being home I've been busy with Insurance issues for the ERT and choosing the ERT Site which I think we have settled on UCStanford. Even though it is a little further I feel confident that this is the best location for Scotty and his infusions and we really liked the Geneticist. With this decision behind us we can now move on and think about the test and any procedures that need to be done before the ERT begins. Scotty's need annual tests, dental work and a port placed for the infusions. My question is can they place the port before the ERT is FDA approved? I have talked with his Pediatrician about this so hopefully she'll have some answers for us next week.

Other than the above it has been pretty quiet. The rain finally stopped and the next day our 87 degree weather begins! Tom (my anti-Ford husband) actually took my mustang convertible out of the garage today to the trap shooting range! He normally doesn't want anyone seeing him driving a ford so I have to wonder what the reason was behind him uncovering the car, charging the battery and trying to fit all his trap shooting stuff into the small trunk(which he did)to drive to the range full of his male friends who know he is anti Ford! I know he can't sale it without my signature!(just kidding) although he did say he got a lot of offers on it!

Click Here to see photo of my car!

Thank each and everyone of you for stopping by to check up on our percious son Scotty.
Have a great week.
Kim, Tom & Scotty

Saturday, April 29, 2006 4:15 PM CDT
Hello Everyone

Sorry it has been a little while since I've updated! Especially since you're probably wondering how Scotty's Photo Shoot for Shire went?
Well we headed for San Diego the day before Easter and I think it rained all the way to LA. Hoping to escape our rain here in the valley I was beginning to get depressed thinking that the wonderful rainy weather we thought we left behind may in fact be following us to San Diego!
Well fortunately for us it did stop in LA and by the time we got to San Diego Saturday afternoon the sun was shining!
Scotty was so excited to see his cousins Sarah and Ally as they were to see him (even though their other cousins from No. CA just left from their week long visit with them about a hour before we arrived!)

Saturday, April 29, 2006 4:15 PM CDT
Hello Everyone

Sorry it has been a little while since I've updated! Especially since you're probably wondering how Scotty's Photo Shoot for Shire went?
Well we headed for San Diego the day before Easter and I think it rained all the way to LA. Hoping to escape our rain here in the valley I was beginning to get depressed thinking that the wonderful rainy weather we thought we left behind may in fact be following us to San Diego!
Well fortunately for us it did stop in LA and by the time we got to San Diego Saturday afternoon the sun was shining!
Scotty was so excited to see his cousins Sarah and Ally as they were to see him (even though their other cousins from No. CA just left from their week long visit with them about a hour before we arrived!)

Tuesday, April 11, 2006 10:03 PM CDT
Hi Everyone!

Everything has been going great! Scotty is doing well and looking forward to seeing the Easter Bunny! Last time I posted we were getting ready to see a new Geneticist @ UCStanford for Scotty. We went to the appointment and the Dr. was very familiar with MPS which was a great relief. We had a great visit and talked about the ERT and the possibility of Scotty doing the infusions there. I think my only hesitation of choosing this location opposed to Madera's Childrens Hospital
is the commute. The infusion itself will take at least 4 hours and we will need to arrive one hour before beginning the infusions and have to wait around for 2 hours afterwards in case there is a reaction. If this isn't stress enough I just don't know if I would also be able to handle the
the commute through the bay area traffic! This will probably be at the very least a one and a half hour commute each way. This would make for a very long day but I also have to realize this would only be for 8 to 12 months and then we would move to a site located in our City. I guess we will just have to sit down and make our pro and con list and make a decision from there. I will keep you all updated on our decision.

Well I have some great news! We were asked a few weeks ago by Shire Pharmaceutical if we would be interested in letting Scotty be part of their new campaign. Obviously Shire is anticipating the FDA approval of the ERT and will be updating all their educational material to include information about the ERT.
We will be meeting the photographers who are flying out here from Boston next week in San Diego. We figured since we were already going to be there that this would be a great location for a Photo Shoot. We will meet with them briefly on Monday the 17th and shoot on Tuesday and Wednesday. I'm so excited for him and to be part of educating the "world" on MPS!

Thank You for visiting and checking up on Scotty. We appreciate each and every one of you who take the time to stop by.

Happy Easter to you all and your families.

Wednesday, March 29, 2006 1:16 AM CST
Once again I would like to THANK all of our family and friends for stopping by and checking in on our little Scottyman and signing his guestbook. We really appreciate all your Thoughts and Prayers so keep them coming because you can never have too many.
I can not believe that we are so close to the FDA approving his drug! FDA has agreed to review the ERT Trials within 6 months of submission which was Nov. 05 so we are expecting the approval by May 25th!!! We (Scotty) have a Doctors appointment today at UCStanford to meet the Geneticist there and hopefully check out their Infusion Site for the ERT.
We met with another Geneticist last month at Madera's Childrens Hospital but weren't able to check out the ERT Infusion site. We really liked the Doctor and his Genetics Counselor at Madera's CH. but we need to explore all of our options since we will be spending so much time there once the infusions start. Hopefully we will only be going to either of these sites for no more than 8 months to a year and then we can do the infusions locally and then eventually at home. The closest of the two sites we are looking at is approx. 65-70 miles away and the one we are checking out today is 90 miles away (very close to San Francisco which means bay area-traffic!) BUT I would travel to the end of the earth for treatment for Scotty. I'm just happy we are checking out these sites now and not waiting for the approval that way we will already know where we'll be going weekly.
Shire Pharmacuetical has been wonderful and has even offered to deal with our (any MPS II families) Insurance Companies who may be giving us trouble with covering the ERT. They are hosting (along with 2 other Co.s) a MPS Family Meeting on May 20th in the Bay Area. Dr. Harmatz who is in charge of the MPS II ERT Trials at Children's Hospital Oakland will be a guest speaker. Shire will also be available to answer any questions we may have about the ERT which will be great. I will keep you posted about our appointment today and the meeting in May.

We really haven't done much since our last trip with our trailer to Pismo Beach. It's always hard to beat a trip to the ocean!

We did have the greatest time at an Airshow a couple of weeks ago with our friends John,Alicia,Ciara & Hunter Bennett. Those of you who know Tom know that he has attended and participated in tons of Airshows being part of Steve's (The Wild Thing) crew but it has been years since Tom has attended a show and I think this is the first time as only a Spectator. The Blue Angels flew last which was really neat for John because he was assigned to be a mechanic for the Blue Angels but then the Gulf War broke out so it never happened. The kids really seemed to enjoy the show and they were all so good. Scotty did great until the very end when one of the performers had fireworks shooting off her plane. This kind of freaked Scotty out so I'm happy this was at the end because had it been the beginning I don't think he would of been real happy! Well it is getting very late (or early) 1:30a.m. and I need to get some rest but I will try to finish this up tomorrow because I
do have some more news to share.

I just wanted to wish Happy Birthday to our wonderful friend Hunter Bennett. It was March 24th but his party is this weekend and I can't wait to see him. If you have time stop by his website and wish him a Happy Birthday!

I would just like to ask if you would please add our very special friend Nathan to your prayer list. This last month has been very rough for Nathan's parents because the doctors are not able to tell them what is causing Nathan's severe panic attacks. He can not sit still, is constantly screaming and is saying "help me"! If you have a chance please drop by his website and let them know you are thinking about them. Thank You

Tuesday, March 14, 2006 11:54 PM CST
Hi Everyone

I'm excited to say that since my last journal entry we have seen some improvements with Scotty! We have recently added Fish Oil and Flaxseed Oil to Scotty's daily intake of Vitamins/Supplements and I believe this is the reason for the improvements (as we had hoped). He also showed some emotions the other night that we had never seen before.
He was watching one of his movies (Tarzan) with daddy and it was getting to be bedtime so daddy turned off the movie and Scotty will normally just lay down on the couch or read one of his books but this time he got so upset that Tom turned off the movie he began to cry! Scotty never cries unless he is hurt. Tom said Scotty had some big tears and it just killed him so he turned the movie back on. There was another incident that happened where Scotty recognized that something was where it shouldn't of been and called out for me to come get it!
When we picked up Scotty last Friday from school his teacher made a point to walk with Tom and Scotty out to the car where I was talking with another parent to let me know that she had been noticing some changes in Scotty
(I had not told her about Scotty taking the new supplements). She said Scotty was now opening the class door which he couldn't do before because he couldn't turn the handle and now he can! She also noticed that he was getting on a tricycle by himself at recess time. Before he needed help because he couldn't get his leg high enough to go over the seat.
He also showed her some affection for the first time last week. She was sitting in a chair reading a book to the kids and Scotty decided he needed a hug so he climped up on her chair and put his arms around her and layed his head on her shoulder. He was there a couple of minutes and got down and went on about his business. So Sweet!

Tuesday, March 14, 2006 11:53 PM CST
Hi

Wednesday, March 8, 2006 3:56 PM CST
Hi Everyone

First of all I just wanted to thank everyone for their "get well wishes" for me because I think they worked! I have been feeling much better and I almost have all my hearing back in my right ear!
Scotty is doing great and didn't catch any of my bug so he's a trooper! He got to spend a lot of time with daddy when I wasn't feeling too well so they had a good time.

Wednesday, February 22, 2006 10:05 PM CST
Sorry that it has been a couple of weeks since I have updated Scotty's journal but I have been sick with a cold and a sinus infection. The great news is that Scotty is doing just fine and fortunately he did not catch his mommy's cold. He was beginning to get an ear infection but we caught it in time and treated it now his ears are all clear. I have been trying to get some Press Releases put together about Scotty for National MPS Day which is this Saturday so they can put the articles in our local paper and the newspaper in the City where Tom and I were born and raised. This is the first time that I have ever contacted the Media about Scotty and I wasn't sure if I was ready but I know we need to make people aware of MPS and if this is what I need to do then I will.

Senate Passes National MPS Awareness Day Resolution
On February 24 the Society will launch an education campaign at a press luncheon in New York City. The campaign, “Join the Search”, will focus on the importance of early diagnosis and treatment of children who suffer from MPS and related diseases. MPS is not marked by the number of people its affects, but by each individual who triumphs over its many challenges. Because every patient counts, the National MPS Society will announce a call-to-action for physicians, parents and the public to “join the search".
Click Here to visit "Join the Search" website.>
In honor of National MPS Awareness Day, the National MPS Society will ring The NASDAQ Stock Market closing bell along with representatives from BioMarin Pharmaceutical, Genzyme Corporation and Shire Human Genetic Therapies. The Market closing can be viewed on the NASDAQ web cam at NASDAQ WEBSITE Scroll to the bottom of the page and click on MarketSite Web cam. Viewers must have Windows Media Player to view the website cam, which is available for downloading from this site. We encourage you to access the web cam at 3:45pm EST. The Market Close is available from 3:50pm; the Market closes at 4:00pm EST. Click Here to view event if you didn't catch it live.

Sunday, February 5, 2006 6:25 PM CST
SUPERBOWL SUNDAY

Well it has been a couple of weeks since I've done an update but truthly not a whole bunch has been happening.
Scotty has been healthy since he got over his cough during Christmas vacation. We did have an appointment at Madera's Children's Hospital a couple of weeks ago to meet with the Geneticist there. Scotty has not had a Geneticist follow him since a couple of years after his dx.
We were seeing one but I don't think his heart was in to it and I could never get any help when I needed their assistance needless to say we didn't return back after a few visits. When Scotty was participating in the Natural History Study for MPS II we were going back to North Carolina and seeing Dr. Muenzer who was conducting the study and I just thought of him as Scotty's Geneticist.
I just forwarded the test results from NC to Scotty's local doctors. I would prefer that Scott's Geneticist would be at the same location that he will be receiving the Enezyme Replacement Therapy (when approved by the FDA).
Madera's Children's Hosp is one of our options as is UCStanford and we haven't seen that Dr. there yet but hopefully soon. We really liked the Dr. and the Genetics Counselor at Madera's CH but we still would like to check out UCStanford.

Scotty has been doing great in school. He has had a One-on-one Aide all year but it wasn't until about 2 weeks ago that he finally got his permanent One-on-one Aide. His name is Sonjay and Scotty's teacher has told me numerous times that Scotty warmed right up to him. I obviously met him when he started but we didn't get to have a sit down meeting (informal) until last week. I could tell during this meeting that Sonjay truly wanted to help Scotty and wasn't there just to earn credits which makes me feel much better. He had already checked out the MPS Website and read up on MPSII which is very comforting to me. Scotty had a teacher last year that didn't bother to read the phamplets that I had given him on MPS II nor did he have any interest in the children in his classroom. You really have to wonder how some of these teachers become Special Education Teachers?!

We still are waiting to hear from Make A Wish to see if they will be able to grant Scotty his wish. I'm not sure how long this process usually takes but his coordinator called me at least 2 weeks ago to say they were going to discuss Scotty's request the next day in a meeting so hopefully we'll hear something soon. ****UPDATE FEB 8TH -MAW called me and said they were still working on his wish because they were having to call plumbers and a construction co. but she said they were almost certain that they would be able to grant him his wish. Hopefully I'll have the final next week!

Please keep Scotty in your prayers along with the other MPS children. It has been a real cold winter and this is so hard for a lot of the kids because just catching a cold is so serious and affects their health so much. We also have a lot of MPS babies who are receiving BMT's and this is so much stress on the familes because they are apart for so long while transplant is taking place not to mention whether or not it is successful so please pray for all of them for us.

I want to say "Thank You" and "Love you all" to my MPS Friends and Forum Family that listen to me (or reads my marathon emails), answer my questions and help me become a little less computer illiterate. You all are such a big part of my life and I don't know what I would do if I didn't have you all.
I also wanted to Thank everyone who takes the time to visit Scotty's website to see how he is doing. I know a lot of you are sitting in the hospital with your child and have been there a long time. I appreciate you signing his guestbook and letting me know that you've been there, it means a lot to us.

Thursday, January 19, 2006 11:44 AM CST
Scotty has been doing great since his last bout with the cough at Christmas. He returned to school and fell right back in to his old routine although he was quite tired for the first few days when he returned home from! I would just give in and let him take a nap because I felt so sorry for him being tired. His teacher told me they were going out to recess with some of the older kids and Scotty's class just loved playing with then and running and chasing them all over the playground so I'm sure this also contributed to him being so tire!
Scotty's been doing great in school also, when he returned to school his teacher told me that any time they asked him to do something he would always ask "why"! and he seemed to begin using the word "No" more! She just wrote in his notebook that comes home everyday that last friday he completed a task and told her "done" AND Tom swears that that the other night Scotty told him "daddy more" as clear as can be! This is so exciting and I have to say that he kind of looks at us more with a look like he really is understanding what we are telling him.
Scotty class is going on a field trip tomorrow to Hilmar Cheese Factory which is a great place for kids. I know I went with him about 3 years ago with another class and it was fun. The problem is that Scotty also has his first Dr. appointment with a new Geneticist at Madera's Children's Hospital. We were given this Dr.'s name and hospital as one of the sites that Scotty can received his ERT (when approved by FDA) along with another Dr. at Stanford in Palo Alto. We are checking both Doctors and locations out so when the ERT is approved we've already made our decision as to where he will be doing the weekly ERTs. Please pray and keep your fingers crossed that the FDA gets the ERT approved soon! There are so many MPS II children out there that this is just going to change their lives forever!

Back to the field trip and Dr. appt being on the same day, what I plan to do is let Scotty go to school and attend the field trip which they have to drive approx. 25 miles south on the freeway to get there and I will pick him up there before they head back to school and then we will continue on down the same freeway for another 40 miles or so to his Dr. appt. Luckily we have to head the same way for his Appt. so everything works out.

We still have not heard if "Make A Wish" will be able to approve Scotty's wish for the bathtub but hopefully we should know by next week. They did call and said they would be meeting to discuss some of the wishes that were a little out of the ordinary (I guess we're one)and would get back to us. I have found a new tub that I think I actually like better and did forward that information to "Make A Wish" but I will keep everyone posted when we get an answer.

Thank you all so much for checking in on Scotty and seeing how he is doing. Scotty is an amazing little boy(and the happiest little boy you'll ever meet)and I can not even imagine our life without him. I have a lot of sisters who easily could of (or are and don't know it)been carriers for MPS II but had healthy children but the "POWERS THAT BE" made the decision that I would be the one blessed with Scotty for whatever reason (and I truly believe there is a reason)and I am thankful for that everyday even with the obstacles that we face. The unconditional love that we receive from our special little angel is more than anyone can imagine and we love him dearly.

Thursday, January 5, 2006 11:53 AM CST
We hope that all of our friends and family had a Merry Christmas and Happy New Year!

Our Christmas ended up being very quiet because we made the decision to stay home due to Scotty's coughing.
Scotty started his cough right before school let out for the Christmas break and did not let up until the end of his break. On Christmas morning it seemed to be a little worse than before and Scotty just didn't look like he felt well so when he finally got up Christmas morning it was around 11:30 a.m. and he was hungry so he had a little breakfast then took a quick bath and laid on the couch where he quickly fell asleep again. It was at this point we decided it would be best to stay home so I made the salad that I promised my sister I would bring to her house for the Christmas dinner and Tom took it to her house a long with some gifts. He stayed over there for a while and helped my brother-in-law barbacue the steaks for dinner and also ended up staying for dinner which was fine with me because Scotty was still sleeping.
By the time Tom got home and Scotty was up and feeling better it was a little too late to open presents so we opened them up the next morning. Scotty got a lot of new movies and Disney Sing alongs which he really enjoyed and we spent most of the day watching.
On New Years Eve we went over our friend's Sherri & Greg)house had pizza and way too many snacks then played cards and dominos. We had a great time! Sherri's parents are here visiting from Missouri and they were there New Years Eve also and they are the nicest people you'd ever want to meet we had so much fun playing cards and dominos with them. Greg's mom (who is also very sweet)was there and this was her first Christmas and New Years without Greg's dad who passed away this last year. I'm sure they were married close to 50 years! She seemed to have alot of fun playing poker with the girls! (Sherri's daughter & friend). Scotty was the only little one there but that didn't stop him from having a good time! He knows everyone well and is always comfortable over Sherri's so he had a lot of fun sneaking cookies and trying to steal our dominos!(boy he is quick)
We headed home around 11:00 p.m. and actually stayed awake to ring in the New Year. New Year's day and the following day we were pounded with rain so we didn't go out much except Tom who was doing some shopping for me.

On Tuesday, Jan.3rd Tom returned to work and Scotty returned to school.
Scotty and I were waiting outside Tuesday morning for his bus to arrive
like we always do but this time when the bus stopped and opened it's doors
Scotty just ran and got on that bus faster than I have ever seen him move! It was so funny! I guess he was pretty bored at home.

Monday, December 19, 2005
Today was the first day of Scotty's 2 week Christmas vacation and we stayed home all day. Scotty has been doing great except for a tiny cough so I'm trying to limit our outings until he is feeling 100hich means we'll be watching a lot of Barney videos!
The volunteers from "Make A Wish" will be coming to our house on Wednesday and completing the paperwork to get the ball rolling for Scott's wish. I will update after our meeting with them and let you all know how it went!

Tuesday, November 15, 2005 11:14 AM CST
We just returned home from the MPS Conference in Scottsdale,AZ and we had a great time! We got to see all of our old friends and meet some new friends. Scotty
had a great time and really loved taking a spa everyday with his daddy. Scotty got to see Barney and Elmo when they visited the Daycare but he was a little scared.
My sister Kelly went with us and she also had a great time.
This was her first event with other MPS children and she was a little scared at first of becoming too emotional but she did a great job. This meant the world to me that Kelly attended the conference with us because I know she had a lot going on at home (kitchen remodel).
Kelly left on Sunday morning but we stayed a few extra days for a little rest and relaxation. We took a day trip to Sedona on Monday and I have to say besides Scottsdale, Sedona has to be one of my favorite places! It was absolutely beautiful. We visited all the shops and then we took a 2 hour jeep tour of Sedona's dramatic western canyons. It was awesome and Scotty really enjoyed the ride. You can enjoy all of our pictures from our trip by clicking on link below for Photos and then opening the Arizona Album.

Thursday, November 17

Last night we spent the whole night in the ER! I got a call from Scotty's school teacher in the afternoon saying that Scotty suddenly starting saying Ouch, Ouch and that he was crying and breathing differently so I went and picked him up and called his Pediatricians office for an appointment asap. I was able to take Scotty down that afternoon and I explained to them that Scotty did the same thing one night while we were in Arizona and we thought his back was hurting him because he wouldn't sit down but once I layed him down he was fine. I also explained to them I felt that the problem may be that he was constipated because his tummy was distended and hard and he hasn't been having his regular bms since taking the Genistein and vitamins.
His doctor saw him and saw how Scotty was hurting when he stood up and also saw that his tummy was more distended than normal. She wasn't sure if he hurt his back or if something had happened to his hips or the constipation so she really wanted us to get some xrays done asap and sent us over to the ER. We got there about 5:30pm and finally spoke with a Dr. at 10:30 p.m. who then went to review his xrays and came back to talk to us around 1:00 a.m! He showed us on the xrays where his intestines were impacted (like I thought) and wrote us a prescription for a liquid laxative and an Enema! Fortunately the liquid laxative worked. Scotty has been doing much better since the visit. I hope never to see another ER !

Monday, November 21, 2005

Today we picked up Scotty's new wheelchair/stroller and it's perfect! I think Scotty started to get a little sore sitting in his old stroller while we were in Arizona because it was really too small so I'm so happy we have it for our trip to Disneyland.

Tuesday, November 22, 2005

Today we are leaving for San Diego to spend Thanksgiving with my brother Rodney and his family (Wife-Wendy and kids, Sarah,Ally and Michelle). They moved from our area a little over a year ago to San Diego and this will be my first visit to their new home. Tom and Scotty got to visit them this last March while I was in Italy.
I'm so excited to go and I'm really excited for Scotty because he gets to see his favorite cousins and his Uncle Rod and Aunt Wendy who he really loves so he will be excited to see them all.
On our way home we will be stopping by Disneyland for a couple of days!
I hope you all have a Happy and Safe Thanksgiving.

Monday, November 28, 2005

Today we just arrived home from our trip to San Diego. Our drive down there and home was very uneventful except for the fact that Tom was driving and doing that man thing where he was racing some invisible man clock! We did make good time and Scotty was a great passenger watching his DVDs.
We had a great Thanksgiving and visit with my brother Rodney and his family. The weather was absolutely beautiful and we even drove over to the beach after Thanksgiving dinner to watch the sunset! Scotty loved seeing his Aunt and Uncle and cousins again. My nieces are Sarah (will be 9 on 12/27) and Ally 7 and my older niece who is 17 and was visiting from Sacramento then there's Scotty who's 8. When they lived here Scotty always seemed to follow Sarah because they had grown up togather but it was really funny to see when we arrived at my brothers because my cousin Ally has now taken on a very nuturing role with Scotty and he just loves her attention.
I don't know if it's a size thing because Sarah has grown quite a bit and Ally is more Scotty's size but she was so concerned that Scotty was taken care of even to the extent of reading a book to him while he took his bath!
It was really great to watch. They all love each other very much and have fun togather but it's just interesting to watch the changes.
My sister-in-law Wendy and I got to do a little shopping the day after Thanksgiving while Tom,Scotty,my brother and nieces went to visit Tom's older sister in a nearby town whom Tom and Scotty hadn't seen in probably a couple of years.
We left my brothers house on Saturday morning for Disneyland (we were even able to talk my brother into taking his family to Disneyland with us ( HE HATES CROWDS). Disneyland was pretty packed (they even closed the park the day before because there were so many people). We got the Special Assistance pass for Scotty and we were good to go. We rode so many rides that day because 98f them we were able to use his pass. I think there were 2 rides that we couldn't use the pass but we got Fast Passes for them so we really never waited in line for any rides! It was great. Scotty loved the new Buzz lightyear ride and we all loved the Indiana Jones ride and went on it quite a few times. We just had to fight the crowds getting from one place to another. My sister-in-law actually made the comment to me that they had rode more rides and saw more shows that day than any of their other visits to Disneyland so as you can see that pass comes in very handy. My brother and his family went home that night and we stayed at the Disneyland Hotel Saturday and Sunday night. My mission on Sunday was to get Character autographs and pictures and we got alot of each of them. Scotty even got to see Mary Poppins for the first time (he loves Mary Poppins). The Disney Characters were very good with Scotty infact I asked one disney employee if she knew where we could find Jesse (from Toy Story) and she said she would go find out for us and then she came back with this other employee who said he'd take us to go find her and he did and he made sure we got pictures with her and Woody.
I believe Minnie Mouse had a huge crush on Scotty because we saw her in California Gold at the beach party and
she just came right over to him and danced with him and just stayed at his side forever and when we were leaving Disneyland park Sunday night at closing Minnie was in front of the big Christmas tree signing autograph books and taking pictures and we were patiently waiting because I hadn't got her autograph yet but of course we were being crowded out by other people and then Minnie saw Scotty again and came right over and got his wheel chair and let us take pictures and she even wrote quite a bit in his book not just her signature and then she started dancing with him and I told Tom even though it was a different Minnie (now in a formal dress) I think it was the same girl (Minnie) as earlier because she just started dancing again with him. He ate it up.
We got up Sunday morning and ate breakfast at the Rainforest Cafe at Downtown Disney and then just finished up packing up our things and headed home.
I will put some of the Disney photos togather for you to see. You may check now to see if I got it done already.
Back to reality.

Monday, December 5, 2005

Today Scotty had a Dentist appt with his new Dentist. We haven't seen a Dentist since last October when he had all his procedures done under GA.
I knew the new dentist would not be able to get xrays so I took his xrays from last October (2004). Tom went with us to the appointment because he knew he'd have to hold Scotty (and he did) but the Dentist was able to get a really good look (so did I) at all his teeth and could only see one possible cavity! She said all his other teeth looked great and we were doing a good job brushing them. That was great news!

Sunday, October 30, 2005
We have had a very busy month, we attended and participated in our first MPS Walk/Run Fundraiser in San Rafael (BioMarin Walk/Run). We had a great time and met 2 other local MPS II families who's boys are 7 and 9.

On Oct. 22,05 Scotty, myself and one of our very best friends Sherri attended the MPS Walk/Run in LA. We drove down on Friday participated in the Walk/Run on Saturday and came home on Sunday. We had a great time walking the 5k and meeting all the other MPS families and their special children and my forum friends.I pushed Scotty in a stroller because there was alot of uphill walking but he had a great time watching his friends Hunter and Ciara who were also in strollers right next to him. We received alot of donations for the Walk/Runs and I just wanted to thank all of our family and friends who were able to donate. We really look forward to these events next year and may even try to plan one of our own. I hope to post a website here real soon where you can view the photos from these events.

Wednesday, March 23, 2005 8:12 PM CST
SORRY EVERYBODY, CARINGBRIDGE IS NOT ALLOWING LINKS TO OTHER WEBSITES SO I HAD TO CHANGE THE WEBSITE FOR NOW. IF YOU WOULD LIKE ME TO EMAIL YOU THE LINK TO A WEBSITE, JUST SEND ME AN EMAIL. BELOW IS THE EMAIL THAT I RECEIVED:

Hello:

We are embarking on a road to overall improve CaringBridge. CaringBridge has grown tremendously since it began in 1997. Its intent is to help others connect to their families and friends. A vast majority of the pages use CaringBridge to connect specifically to their known network of support. CaringBridge was not designed to be a public access to families.

There has formed, through various pages posts links to other CaringBridge pages, a much more public access area. Its been a evolving community – one that has provided much support to those seeking it. It is very positive to see this support community grow. Unfortunately, since CaringBridge was not designed with this public linking in place – it has been very open to abuses.

We are moving towards putting more ‘tools’ around this linking community. A first step, however, is the removal of existing links. We ask that you remove your list of list from the website.

There will be other ‘link sharing’ tools introduced within the next few months that will help this community in the long run. At this time, however, please remove the links.

If links are still active on 3/24/2005, the links will be removed. The remainder of the page will stay as is.

Sincerely,

Sona Mehring

CaringBridge Executive Director and Founder

Wednesday, March 23, 2005 8:12 PM CST
SORRY EVERYBODY, CARINGBRIDGE IS NOT ALLOWING LINKS TO OTHER WEBSITES SO I HAD TO CHANGE THE WEBSITE FOR NOW. BELOW IS THE EMAIL THAT I RECEIVED:

Hello:

We are embarking on a road to overall improve CaringBridge. CaringBridge has grown tremendously since it began in 1997. Its intent is to help others connect to their families and friends. A vast majority of the pages use CaringBridge to connect specifically to their known network of support. CaringBridge was not designed to be a public access to families.

There has formed, through various pages posts links to other CaringBridge pages, a much more public access area. Its been a evolving community – one that has provided much support to those seeking it. It is very positive to see this support community grow. Unfortunately, since CaringBridge was not designed with this public linking in place – it has been very open to abuses.

We are moving towards putting more ‘tools’ around this linking community. A first step, however, is the removal of existing links. We ask that you remove your list of list from the website.

There will be other ‘link sharing’ tools introduced within the next few months that will help this community in the long run. At this time, however, please remove the links.

If links are still active on 3/24/2005, the links will be removed. The remainder of the page will stay as is.

Sincerely,

Sona Mehring

CaringBridge Executive Director and Founder

Wednesday, February 9, 2005 9:32 AM CST
SANFILIPPO (MPS-III) WEBSITES:

Andrew B. (Tranplanted)
Andrew J.
Annabelle (Transplanted)
Begg Children
Cameron & Angel Douglas (Transplanted)
Ciara, Hunter, & Angel Tommy (Transplanted)
Georgia
Hailee
Harmen (Tranplanted)
Jacqueline
Jesse
Jillian (transplanted)
Jon & Jason
Julia G. (Transplanted)
Lauren (Tranplanted)
Lindsey
Luke
Olivia's Wish (Transplanted)
Zulieka (Transplanted)

HUNTER (MPS-II) WEBSITES:

Andrew C.
Andrew C.
BJ
Devon
Jack
Jordan
Josh & Jake
Kraig
Logan
Sam
Seth
Skyla
Will

HURLER (MPS-I) WEBSITES:

Aaron
Allison
Andrew H.
Ashley
Austin C.
Cade
Caleb
Cameron
Caterina
CJ
Daria
Elliott
Evline
Isabella
Jack
Jacob I.
Jacob & Sammie
Jaxon
Jeanna Marie
Jonathan
Julia
Kaitlin
Katilyn
Laney
Loren
Luke
Maddy
Matthew S.
Max F.
Molly B.
Nolan
Nathan
Oliver
Reilene & Nikkolas
Riley
Romie
Sean & Shayne Lynn
Sophie
Susannah
Sydnee
Tatiana
Taylor M.
Taylor
Tommy & Kaitlyn
Tony
Yasmine
Zach

MPS ANGLES:

Alexis - MPS-I
Bella- MPS-I
Brittney - MPS-I (Transplanted)
Carter - MPS-I
Christpher - MPS-I
Hermes & Aristofanis - MPS-III (Transplanted)
Kaitlynn - MPS-I
Kassidy - MPS-I
Kyle - MPS-III (Transplanted)
Mattie Rose - MPS-I (Transplanted)
Max - MPS-I
Moriah's Bears Of Hope
Niki - MPS-I
Reese - MPS-I (Transplanted)
Tyler - MPS-I

OTHER TRANSPLANT FRIENDS:

Adler E.
Alex S.
Ashleigh
Cassie
Cody
Cole
Connor
Degan
Dylan
Elijah & Alissa
Isaiah
J.D.
Jacob D.
Jake
Khalita
Kyle
Malcolm
Rachel
Robert
Sarah S.
Shannon
Trey
Trimper Kids
Sean
Tucker

ANGELS:

Amanda E.
Aroma
Brendal
Cory
Folden
Garrhett
Hunter J.
Jillian L.
Julien
Maddie
Madison
Manny
McKenzie
Ryan K.
Ryan S.
Terrance "T"
Travis
Tyler

Monday, January 24, 2005 1:32 PM CST
SANFILIPPO (MPS-III) WEBSITES:

Andrew B.
Andrew J.
Annabelle
Begg Children
Cameron & Angel Douglas
Ciara, Hunter, & Angel Tommy
Hailee
Harmen
Jacqueline
Jesse
Jillian
Jon & Jason
Julia G.
Lauren
Lindsey
Luke
Olivia's Wish
Zulieka

HUNTER (MPS-II) WEBSITES:

Andrew C.
Andrew C.
BJ

Devon
Jack
Jordan
Josh & Jake
Kraig

Logan
Sam
Seth
Skyla
Will

HURLER (MPS-I) WEBSITES:

Aaron
Allison
Andrew H.
Ashley
Austin C.
Cade
Caleb
Cameron
Caterina
CJ
Daria
Elliott
Evline
Isabella
Jack
Jacob I.
Jacob & Sammie
Jaxon
Jeanna Marie
Jonathan
Julia
Kaitlin
Katilyn
Laney
Loren
Luke
Maddy
Matthew S.
Max F.
Molly B.
Nolan
Nathan
Oliver
Reilene & Nikkolas
Riley
Romie
Sean & Shayne Lynn
Sophie
Susannah
Sydnee
Tatiana
Taylor M.
Taylor
Tommy & Kaitlyn
Tony
Yasmine
Zach

MPS ANGLES:

Alexis - MPS-I
Bella- MPS-I
Brittney - MPS-I
Carter - MPS-I
Christpher - MPS-I
Hermes & Aristofanis - MPS-III
Kaitlynn - MPS-I
Kassidy - MPS-I
Kyle - MPS-III
Mattie Rose - MPS-I
Max - MPS-I
Moriah's Bears Of Hope
Niki - MPS-I
Reese - MPS-I
Tyler - MPS-I

OTHER TRANSPLANT FRIENDS:

Adler E.
Alex S.
Ashleigh
Cassie
Cody
Cole
Connor
Degan
Dylan

Isaiah
J.D.
Jacob D.
Jake
Khalita
Kyle
Malcolm
Rachel
Robert
Sarah S.
Shannon
Trey
Trimper Kids
Sean
Tucker

ANGELS:

Amanda E.
Aroma
Brendal
Cory
Folden

Hunter J.
Jillian L.
Julien
Maddie
Madison
Manny
McKenzie

Ryan S.
Terrance "T"
Travis
Tyler

Click here to go back to the main page.
----End of History----