Journal History
Click here to go back to the main page.
Wednesday, August 6, 2008 10:21 AM CDT
Wow finally an update....Don't even know where to begin..
Tommy turned 11 this past Feb. and has recoved great from his spine surgery. Does'nt wear the brace anymore and walks and run...He will be repeating the 3rd grade again because he missed half a year last year due to his spine surgery. He is still my little man...Only 3 ft tall but he loves life like no other.He would rather stay inside the heat gets to him..He is still on 2 heart meds.. Same ones for the past 10 years...He gets winded when he walks alot so if we go anywhere that has alot of walking we take his wheelchair and he is okay with that...
Miss Kaitlyn turned 5 this past April...I am speechless when it comes to her. She does'nt look like she has Hurlers is what all her Drs. say. She is going into mainstream Kindergarden...She is doing awesome...I have to remind myself that she has Hurlers...We have'nt told her she is different and has something wrong with her. She acts,talks like a 5 yr. old princess..I do know she will have total hip replacement on both hips and staples in the kness real soon. I can't even imagine doing this on her but i know we have too. We will travel back to Minnesota and let Dr. Schwender do this real soon. She is so different than Tommy.
My oldest Kirstin will start high school this August...A freshman...She will be going to from a catholic middle school to public high school. She is a beautiful young lady and everyone tells us to watch out...
I will try and update more...Coming here brings back memories some good some bad...Just recently I read about 2 other MPS1 kids that earned their angel wings...Cade and Suzzanh...these kids were so young...
Saturday, January 5, 2008 10:15 AM CST
Hello,
We are leaving today to return to Minnesota... The kids need more things done. Kaitlyn will be sedated on Monday for an eye exam, hearing and a EMG for carpal tunnel. At least I got them to put her to sleep for these..The EMG is very painful awake. Tommy will be in the OR on Tuesday to take out his port, hearing test (ABR). Both will see Dr. Swender who works with the back and spine. Tommy has recovered well from spine surgery, Also we have appt with the heart Dr. since both have heart problems and on meds for it. Anyways if I get to a computer while we are there I will update...Kaitlyn is looking forward to making snow angels in the snow....She is an angel!!!
Love Susan
Thursday, October 25, 2007 8:35 PM CDT
Hello,
We are home back in Florida. On October 12 we flew out of Minnesota on a non-stop flight. It took about 2 hours 40 minutes. I sat with Tommy and Tom sat next to Kaitlyn. The kids did great. Tommy sat next to the window and I in the middle and a young girl next to me. I gave Tommy his pain med right before take-off and he sleep 80f the ride home. We brought a pillow with us so I put it near the window and took his shoes off and laid him lying down somewhat. At that point after surgery(2 weeks out) Tommy's appetite still was'nt back to normal he did'nt want to eat on the plane. Kaitlyn sleep some and also played her V-tech hand held game. My Mom and Kirstin were there to greet us..Tommy and Kaitlyn were so HAPPY to see them. I forgot to mention that before we left Minnesota we got Tommy's wheelchair. That helped alot,we had been carrying him up to that point. His wheelchair is so small. Brand new one too. We have it until we don't need it anymore. Kinda like renting it. Insurance pays for it.At the baggage claim our friends Tim and Steve were there to help Tom with the luggage we had. I left with my Mom and the kids right away to come HOME.. It was so nice to be home. The kids were really happy too. I had a feeling that once we got home Tommy's appetite would come back and I was right. Over the next couple of days he started to ask for more of his favorite foods. (Anyone that knows Tommy knows how much of a picky eater he is).I know what I am about to say may gross some out but this is hugh for Tommy. Tommy has normal poop. What I mean is for around the last several months I was changing him anywhere from 7 to 20 pul.l-ups a day. His poop was real loose, no form to it at all. His bottom would break out and we always had to use butt paste for it. He could'nt help it. He was dignosed with Lumbar Stenosis, and having loose stools was a symptom. And a couple of days after his surgery it all changed. He has at least 1 bowel movement a day. No more than 2. His bottom is no longer red. I am so thankful for this. His energy level is somewhat better. He does'nt sweat at night, does'nt have any problem with walking. We were told that Tommy's dignosed with Lumbar Stenosis was the 1st one that the doctors have ever seen in a 10 yr. old. Anyone 1st thing for our family. We are known for these 1st things to happen to us. Anyways the surgery was a hugh success. Tommy also wears his brace 23 hours out of the day. He goes back Oct.30th here (FL) to have x-rays taken. They will sent them to his surgeon in Minessota and he will call me. Also if everything is on track Tommy will start back school. He has'nt been sice August 27th. I am so happy and releived that this is behind us and we can move forward. Oh I almost forget. I have talked with Minnesota about the kids engraftment and enzyme level. Kaitlyn's blood was mixed up so she has to have it redrawn and we wait 2 weeks. But Tommy's has great news. His engraftment (donor cells is the same) 8 to 12 onor cells.But his enzyme level has gone UP!!! In March 2006 he was 5ormal and now he is 27ormal. We are all in shock even his doctors. I am waiting for a call from his BMT doctor to explain this to us.Could this be a miracle happening? All my kids need is the enzyme to live..And Tommy's is going up....I will close with this good news.
Love Susan
Monday, October 8, 2007 10:07 PM CDT
Hello,
Today Kaitlyn was scheduled for an MRI/under sedation. Well they could'nt get an IV started. They tried 4 times and she was so mas...Screaming her lungs off. I told them after the 4th time that this was too much on her and we were not trying anymore. So on Wednedsay she will go to the OR and get some Nitras Gas to make her sleepy and try again to get an IV started....All her lab work has not been done because we need an IV....Tuesday she has her 1st part of her IQ test started. She will enjoy that. They play games with her thru a series of test... Wednedsay the OR and on Thursday more IQ test then our LAST appt. with an neurology doctor.....I am shooting for flying home on Friday. Tommy is doing okay. He is not eating like he has in the past. He hates to wear his brace too...We got his wheelchair and he likes that a little....On Wednesday night all of us are going to a hockey game. We got suite tickets a goodie bag and we will be on the jumbotrom....We would love to hear from anyone.......Take care and sissy and Granny see you soon....Love Susan
Thursday, October 4, 2007 9:48 AM CDT
Hello,
Tommy was discharged from the hospital on Wed...He is doing good. Not walking yet...But I know that will take time. We are at the hospital right now for Kaitlyn's echo....We are having her 4 yr studies done while we are here. For everyone that did'nt know...Back on August 28th Tommy woke up not able to walk....An MRI was done and his spine was compressed...This is related to Hurlers....He looks a little taller...This was not a scheduled surgery, all of this came on really fast....I am doing better know surgery went well..He had six screws in his lower back... He has to wear a brace 23 hours a day....He is doing well with that...Now we are trying to figure out how to get home...Since Tommy can't sit for long periods of time ...I know we are going to fly but I don't know if I have to buy extra seats for Tommy...gotta run Kaitlyn is being called back for her echo....Susan
Monday, October 1, 2007 11:20 AM CDT
hello everyone,
this is the first time i found a computer at the hospital...i have been here since friday.time stands still..i am homesick too....
tommy came thru surgery..he stayed in icu for 2 days on life support...he is off life support and moved out of icu to a different room. they are going to fit him for a body brace today..dont know when we are breaking out of the hospital///anyones that knows me i HATE it.....By the way tommys curve was 70 degrees on his back now it is 10..he looks longer..anyways i know this is short i need to get back to him...take care love susan
Saturday, September 15, 2007 2:57 AM CDT
Well I have a big request right now...My son Tommy needs alot of prayers....He will be having surgery on his spine really soon. On August 28th he woke up not able to walk. I cried not knowing what happened. We had x-ray done and nothing was broken. A week went by and it was getting really bad. We saw an ortho Dr. here and he took an x-ray of his spine and was concerned around the area of his gibbus. Hurler parents know it as the BUMP on the back.A MRI was set up. We were admitted to the hospital last Thursday and the MRI was done on Friday. We were told different opinions by a few Drs. I mailed the MRI up to Minnesota and got a call this past week saying if we don't do surgery now Tommy will go paralized. I am lost for words and numb from everything.The area on his spined that is being compressed affects the feet and his bowel movements. Since all this started I have changed Tommy about 15 to 20 times a day. Right now he is walking but he drags his right foot and you can tell he is in pain. I am trying to stay positive.. We have to do surgery..There is nothing else to help this. We are going back to Minnesota for the surgery. We may be gone up to a month. I am so scared.Please keep Tommy in your prayers. I will keep you informed thru this website.... Susan
Sunday, May 13, 2007 10:40 PM CDT
A drum roll please...Here comes a very long overdue update about the Ries Family...Where should I start? Lets go...My oldest Kirstin is 12 and turns 13 on July 14th this year..She is in the 7th grade and played softball and was a cheerleader this year at SHS Catholic school. she has 1 more year there and then moves up to High School.I was the asst.coach to the softball team this year and had a great time with the girls. Anyone that knows me knows how much I love softball. Played many, many years as a kid and played some as an adult.Kirstin got braces a week ago on her top teeth. Her teeth are straight but she has a really bad overbite so this is why she got braces. In about 4 months she will get them on her bottom teeth. My young daughter is growing into a beautiful young lady. She helps me so much with the kids. She is a special person to have to live life as an older sister to 2 special need siblings who are termially ill. She never complains about any situation. Always sees the bright side to everything.She is wise beyond her years and will be an extrodinary person later in life.. Mommy & Daddy love you Kirstin...Thanks!!
On to Mr. Tommy...
Tommy turned the big 10 this past February 24th. Back in 1998 when we found out about MPS, I remember sitting in the genetics doctors office "the day" we were told Tommy had Hurlers and he said kids with MPS1 usually don't live to see their 10th b-day..Tommy YOU DID IT...We are so proud of you. I know that having a BMT extents the life of Hurler kids but Tommy's BMT failed. Last checked (March 2006) he only has 7-9 donor cells with an enzyme level less than 5 am scared to death to know what it is today. We started enzyme replacement therpy but I did'nt see any improvement. He has'nt had any ERT since last fall. He always got sick days after he received it. We could start again but I get a sick feeling in my stomach wondering if it would really help him. I can't explain this but my gut feeling on things are usually right. So for right now I am letting Tommy live life like a kid should. Going to school, playing with his sisters, watching HIS movies (he loves that the most). If I 2nd guess myself I would go crazy. This feels right to me. I hope I did'nt confuse anyone but this is the only way I can explain it. His breathing is getting worse at night, he does'nt walk that well, I HATE HURLERS...I want him to have Quialty life..Mommy & Daddy love you Tommy!!!! He will be in the 3rd grade next yeat. He loves his sisters!! Tommy is my hero. Always happy and carefree. If only more people were as happy as Tommy this world would be a better place. Now about Miss Kaitlyn Jewel...Her middle name fits her to a "T". She is such a JEWEL...She can spell her first and last name. Spell Mommy, Daddy, Tommy to name a few. Counts to 100, knows all her letters, lower and upper, talks in complete sentences..Kaitlyn is gifted...Her and Tommy are like night and day. Kaitlyn turned 4 on April 9th this year. She is wearing a size 5/6. Taller than Tommy, long beautiful curly blond hair with blue eyes. I feel as if she is my angel. She looks nothing like a 4yr. old who has MPS1. People are in shock when we tell them. I am sometimes taken back because she is so smart. She loves LIFE and everything it has to offer. She has made HUGH strides in Pre-K this year. All her teachers and theripist call her the class SUPERSTAR and role model. Everyone wants to adopt her. People stop in their tracks everywhere to comment on her beauty. I know I may sound a bit conceided about her but this is the truth..She turns heads everywhere. I am so blessed to have my 3 kids this year on Mothers Day. We live day to day never thinking about tommorrow. We have to be able to switch gears anytime of the day, everyday...I think only parents with special need kids (MPS) know where I come from when I say that. Switch gears!!! I would do anything to have healthy kids but they would'nt be who they are if they were. I am so happy for the small stuff Tommy does and in awe what Kaitlyn does. Kirstin will do BIG things later in life for living the life she does now.I will also try an update more...I actually thought no one checked in on us. It is very uplifting to me when people check in and let us know in the guestbook. Many of you understand what I mean. Also to all of my friends who have'nt for some reason been a part of my life since we found out about Tommy, I am the same person..Just living a wee bit different life than you. You all know who you are if you read this.
Tom and I will celebrated 13 years this past December. We are more in love now than ever. We live for today..It's easier that way, not much to worry about. Tommy taught us that.I try not to look that far in the future because no one is promised tommorrow. Anyways I will postnew pictures too... Would love to hear from everyone. My house is always open if anyone is every down our way ( Northeast Florida). email me for the exact address. I promise to update more....Love Susan
New Pictures
Saturday, March 24, 2007 2:20 AM CDT
New Pictures....
I will be updating real soon so check back..
By the way does anyone check in on us?? If so let us know.
Love Susan
Thursday, December 28, 2006 10:20 AM CST
NEW PICTURES....
Wishing everyone a happy, safe and heathly New Year....
Love The Ries family....
Monday, November 13, 2006 9:08 AM CST
i know this is a very long overdue update. Lets see where do I begin. First off we have moved from our trailer of 15 years to a house. Total square footage with the garage and screened in porch with pool and hot tub is around 5100 sq. ft.. We are having a great time here. It sits on 1.8 acres too with a nice pond. Kaitlyn loves to go to the pond and feed the fish. We bought it July 25th this year. Alot has happened to our family for the better is all I can say. The kids started school back in August. Tommy is with the same teacher as last year and LOVES school again this year. Kirstin is in the 7th grade at the same school (catholic school). She made the cheerleading squad this year and had a great time with that. She was going to try-out for volley ball but sprained her left foot and ankle a week before try-outs. Oh well their is always next year. Her school goes up to 8th grade. She has told me that she wants to go to high school at our catholic school here. Thank god because our other schools, well let mw say I did'nt wanthergoing to any of them. Miss Kaitlyn LOVES school. She goes 5 days a week from 9am-2pm. She receives Speech,OT and PT there too.I thought she would be a little afraid leaving me but not at all.Its night and day eith her and Tommy. Also my mother is our nanny. I will be going back to school myself soon so we have her 40 hours a week. What a blessing for this. I look back and can't belive what I did by myself for so long with no help.It is so nice to have help. Tom still works the mid-night shift.Itsnice because the kids are gone and we have some time to ourself now.
We are approaching Kaitlyn's 3 year post cord blood transplant day (11-22).It still seems like yesterday. She tested gifted for the school program and was accepted due to her hearing issues. She is 30% hearing loss in both ears. If she did'nt have this she would not be going to school. Never in my wildest dreams did I think she would be gifted. She talks and talks so normal. If only I could get her potty trained that would be great.Iknow she will. You would never guess that she had Hurlers Syndrome. She is so normal. I wished Tommy had the same outcome. I believe its because she was so young at the time of her CBT. When we found out about Tommy at 15 months the doctors here said oh you have time. Wait till he is 2 then do it. Boy if I knew what I know now I would'nt of waited at all. Tommy had received about 10 treatments of Enzyme Replacement therpy. I stopped due to the fact that after each one he was sick for 2 to 3 days.Wemet back up after Thanskgiving to discuss starting back up. Oh by the way Kaitlyn is taller than Tommy..I am going to post this because my computer is making a funny sound. I will update more soon. We would love for you to sign our guestbook. Love Susan
Monday, July 10, 2006 11:12 AM CDT
Our summer is rolling along and in less than a month all 3 kids will be in school.Kirstin's B-Day is this Friday, July 14th.My daughter will be 12. I remember just like yesterday bringing her home from the hopital.She will wrap up her swimming this coming weekend (July 13-16) are her swimming championships.So our weekend will be sitting at championships. Anyone with a swimmer in the house understands how long these meets last.Its just another reminder that summer is almost over.
Tommy went to the doctors last week to get the okay to start ERT.I am really excited about this. His 4th ERT will be Wednesday at 8:30am.My mom will pick up Miss Kate Tuesday night and have her Wednesday and Kirstin wants to go with us.Just think if Tommy did'nt get the shingles we would be on his 8th or 9th treatment of ERT. Oh well things happen..Everyday Tommy talks about school. He really LOVED school this year. Unlike the past years.Tommy will go Monday-Friday 8:30am-2:45pm.
Kaitlyn on the other hand tells me she is staying home with Moma she does'nt want to go to school. Her hours will Monday-Friday 9am-1:45pm.I know once she gets in there she will enjoy it. I have no idea what i will do with this break but I will enjoy it.Tom works the midnight shift and gets home around 9am so we will have this time to ourself.I have tried to load new pictures but somehow it did'nt work so I need Tom to do it. Thanks for checking in...Love Susan
Tuesday, June 13, 2006 6:11 PM CDT
Last Wednesday Tommy recevied his 2nd ERT. Everything went great. Thursday morning Tommy woke up with a low grade fever (99.3), in transplant world and after anything under 100.5 is'nt a fever to worry about. His fever stayed with him thru Friday. Tommy also just laid around not like Tommy he is always full of energy. Friday night I noticed blisters on his right hand. Well I thought it looked like shingels. Saturday they were worse so I took him in to the ER. I was right, shingles. Okay we started him on Acycolvir every 6 hours. Sunday morning the blister had spread and some had turned black so I took him back to the ER and this time they admitted him to the hospital. Not only does Tommy have the shingles he also has the chicken pox's. Its very rare to have both but hey our family is full of rare things. I explained to them that I have no help and I feel that I could take care of Tommy at home so we were dischared late on Monday. Now i worry about Miss Kaitlyn. She has already been exposed to this so all we can do is pray and hope she does'nt get them. Tommy's hand looks so painful. All they said was give him tylenol every 4 hours so we have. So ERT is on hold for now till we recovery from this...Hurricane Alberto brought us lots of rain, we needed rain so that was nice. The winds today picked up alot..Just lots of tree limbs and leaves everywhere. Thank God we did'nt lose power this storm.Just wanted to let everyone know how Tommy is doing.. Take care... Susan
Tuesday, June 6, 2006 9:42 AM CDT
Yesterday I typed a long update and poof it was gone, don't know where it went so I guess I will rewrite one.Last Wednesday on May 31st Tommy did receive his enzyme infusion here in Florida. I must say everything went smoothly and no side affects from anything. We arrived at 8am and walked out at 4pm. Tomorrow we go in at 9:30 for ERT. Tommy was in heaven with the cart full of VHS movies. Anyone that knows Tommy understand this. He is a movie junkie. So we watched, fast-forwared and rewinded till our hearts content. Kaitlyn stayed with my Mom at her job (My Mom is a nanny to twin 1 yr. old boys). Kirstin went with us and she was able to watch the new Harry Potter movie. Each new week Tommy is able to order 1 new released and since the movies they had to rent were older kid ones Kirstin watched the free movie.Tommy was a champ, keeping his blood pressure cuff on all day and having his temp taken all the time. I think he knows that this has to happen. I can't wait to actually see results and this may take a couple of weeks. He sure does have more energy .Daddy came up for a short time. His mid-night shift gets the best of him...We hate it but it pays the bill and also pays all the medical stuff and lord knows we need health insurance. We get nothing as far as Medicade or SSI for neither of the kids. You have to be dirt poor before they will help. We are so far in the hole with medical bills. I put them in a box and when that one fills up I start on a new box. I pay one at a time (very small amount) each week. The rate I am going it will take a million years to pay back everything. Oh well theres nothing more we can do so I don't lose any sleep over it...Kirstin is doing good in swimming. We had 2 meets this past week. Anyone with a swimmer in the family knows how long meets are (4 to 6 hours)...I enjoy it because it gets me out and around other adults. I usually work the concession stand at home meets. Summer is flying by. Yes our annual golf tournament is set for August 5th this year. Oh by the way Miss Kaitlyn is doing awesome...Growing and learning by leaps and bounds. She is so smart...Its hard to beleive she too has Hurlers (MPS sucks)..Drop us a line we love reading who visits...Susan
Another MPS baby earned her angel wings today..I just found her site within in past 2 weeks.
www.caringbridge.org/visit/kayleekrause
Thursday, May 25, 2006 10:34 PM CDT
Summer is here....The kids are out of school...Yeah we get to sleep in...Yes my kids will sleep in till 8 or 9...Tommy will be a 2nd grader next year, Kirstin a 7th grader and Miss Kaitlyn in Pre-K. Miss Kaitlyn is doing great...Talking up a storm and you can understand everything she says...She is so different than Tommy was ather age. I have awesome news to share....Tommy starts ERT this coming Wednesday...I have waited since we got back from Minnesota in March to start this. I could go into all the bumps in the road to why it has'nt started sooner but it really aggervates us to no end.His last MRI in March/06 showed no change and no deposit so we know that with his enzyme level his has (which is low) is reaching the brain...His liver is enlarged so is his spleen. But with a couple of infusion it could be normal. His lower part of his lungs are not working correctly because of his liver and spleen so I am so excited to start ERT to see the changed happen in his body..I have wanted this for years and it is going to happen.My Mom will watch Kaitlyn and Kirstin will be at swimming then a friends house. So I can be with Tommy 1 on 1 at the hospital...Kirstins swims in a league the entire summer. The breast-stroke is her best...She looks like an indian when summer is over...She has that olive skin and boy does she get dark...We plan on doing alot of family things this summer. This will be our first summer in a LONG time where we don't have tons of doctor appts. and the do's and don't with going out in public. NORMAL...could that be possible for our family. Anyways thanks always for checking in on us. We want to hear from everone so drop us a line or two in our guestbook... Love Susan and family....
Saturday, May 13, 2006 9:16 PM CDT
Just wanted to say Happy Mothers Day to every Mom. I am so very blessed to be a mother...I love you Kirstin, Tommy and Kaitlyn.....Love, Mom
Saturday, April 8, 2006 11:48 PM CDT
Happy Birthday to you
Happy Birthday to you
Happy Birthday dear Kaitlyn
Happy Birthday to you...
Sunday April 9th Kaitlyn turns 3.She was born at 1:57am.You have come a long way in your young life.Touched may hearts along the way.You are such a happy little beautiful girl.Mommy,Daddy,Kirstin and Tommy love you so much.Can't wait for you to blow out your candles...I love you...Mom
Friday, March 31, 2006 1:27 PM CST
Saturday 7am......Long night but well worth it....Tommy's infusion started about 11pm and lasted till 3am....NO SIDE AFFECTS...Yeah...Okay now all I need is all of this to work back home and I know it will.We intend to stay put Saturday, pack everything and watch the Gators tonight...Get up early on Sunday and drive home.Hopefully we should be home by Tuesday.Kaitlyn's 3 rd b-day is next Sunday the 9th....Love Susan
Okay it is 3pm...Just got word that Tommy did great..his results from his spinal tap is normal, no water in his brain.His port is in place and working...Have'nt talked with the lung doctor yet but from what i was told everything looked okay....I am going back up to see him...He will get enayme replacement later today.....Love susan
we would love to hear from everyone so sign the guestbook.....
Okay Tommy is in surgery right now.He is having a port placed,a bronch scope of his lungs and a spinal tap....The port because he is going to start enzyme replacement therpy today after surgery...A bronch scope because last week when they did a CT scan of his lungs we found out that his bottom part of his lungs are'nt inflating right.And a spinal tap to check is pressure in his brain.We were supposed to leave today to drive back home to Florida.Right now we will leave when it is best for Tommy.Kaitlyn has recovered great....Her and Tom are back at the RMCH....Please pray really hard that we have done the right thing for Tommy.We have no other option but to do this for him.....Susan
Wednesday, March 29, 2006 12:03 AM CST
Okay it is now about 4:15pm.kaitlyn is back in her room since 12:45 and doing great...She is taped up to a board because she can't move her legs for 4 hours....Only 1 more hour and we can untape her.She is doing great.The nurse said kids her age ususally last about 2 hours being taped up so for her to be taped up for 4 hours is awesome....Tom and Tommy are with us.They ddid an Echo to make sure everything is right in her heart and it is PERFECT..Thanks to Dr. Bass.....Well I need to get back....Susan
Well I am waiting for them to page me to see Kaitlyn..She is having her heart cath right now..I am in a lobby with a computer...She did okay with leaving me.They gave her some Cholorhydrate to make her sleepy.I gave it to her and in about 10 minutes she was asleep.Everyone was touching her long curly hair and saying how much she looked like an angel.Tommy does'nt have anything to do today.Him and Tom are on their way over right now.We are talking with a doctor today about Tommy to see if Enzyme Replacement Therpy would benefit him.Since his snzyme level is so low.I want to make sure that we do everything we can for him.Yesterday went good and both kids recovered great from anasethia.Well our stay up here is about over..We still have no plans yet when we are leaving.Kaitlyn was addmitted to the hospital this morning.If everything goes as planned she will get discharged this evening.Tommorrow we have an appt. with Neurology and Endocrine.Also we will have an exit visit with Dr. Orchard.I need to go.The dr. is coming to talk with me..
Susan
Monday, March 27, 2006 11:22 PM CST
New Photos...
This is gonna be short because my laptop battery is almost dead....Tommorrow Kaitlyn goes into surgery at 8am to remove her port and MRI of the brain and spine.Tommy goes in at 10:30 for his MRI..On Wednesday Kaitlyn goes back into the OR for heart surgery.Both kids are doing good.They had their neuro/ test done today.I am pleased with how things turned out.Tommy is delayed and we knew that but he performed so much better this year than years past.Kaitlyn did great.....Anyways keep the kids in your thoughts and prayers that everything goes well over the next few days...Susan
Wednesday, March 22, 2006 5:10 PM CST
We made it into Minnesota on Sunday around 3pm.It took about 9 hours in the car.We are staying at the RMCH,did'nt know this until we pulled on 35W they called me and said they have a room.When we pulled up to the house Tommy said "There is the house"...The kids are having a good time here.Okay on to the medical stuff..Monday they had labs drawn to check enzyme levels and RFLP's(donor cells) we won't get those results for 7 to 10 days.They both had an ECHO done and waiting also for those results.On Tuesday we had x-rays of the hips,knees,and spine.Tommy has little to no change in his Gibbus(lower back) and Kaitlyn has impoved.Tommy will keep his staples in his knees for now.If he decides to grow some then we need to get another set of x-rays.We were also told that Kaitlyn may NEVER need any ortho surgeries..Yeah!!!Her knees and hips look great.We will recheck in another year.Kaitlyn's EMG (wrist) is normal, which means no carpel tunnel. And Tommy's is somewhat a little better so that is good.Tommorrow Tommy will be sedated for a MRI of his brain and a cat scan of his lungs.Kaitlyn has nothing.Next Tuesday Kaitlyn will have her MRI and port removed in the OR and on Wednesday she will go back to the OR for her heart surgery.The snow is melting really fast.Kaitlyn does'nt want to go near it and Tommy loves it.The kids are really good.Keep Tommy in your thoughts because anytime he is sedated is very risky..We I have more news I will post...Until then Kirstin we love and miss you alot....Susan
new pictures
Saturday, March 18, 2006 3:38 PM CST
Hello...
We made it into Missouri.We drove straight thru and it took about 16 hours.The kids did great..Its alot colder here...Kaityln is sick.Woke up today and threw up..Fever and just laying around.I called the RMCH and we have to stay in a hotel so I got on the phone today and got a reservation for the Raddison Hotel.Its 1 block from the hospital...So at least we can walk there.We are cooking out now with family.Tommy is sliding on his butt down the stairs right now...I will try to update when we get to Minnesota.Lets hope Kaitlyn gets better..If she is still sick I will call the doctors when we get there.Take care everyone....Susan
Monday, March 13, 2006 10:27 PM CST
I have posted the kids schedules.Kaitlyn's appt. are listed first then Tommy's.I have nothing but the wash somewhat done.I have all day Tuesday and Wednesday to pack.We are leaving 80 degree weahter to go where they just had a winter storm.I love the snow so I am excited.We have a van rented for the trip.I am excited and scared to death.I hope that both kids still have the enzyme.I feel as if Life is good right now and at any time something bad could happen.We are also working in some surgeries while we are there.When I have that information I will post it.Kirstin will be staying at my Mom's.Sure hope they have a room at the Ronald McDonald house.If not we are going to stay at a motel.We get nothing for travel expense from our insurance company.Everything is out of pocket.When we pull into Minnesota on Sunday I will call the RMCH and I will know them if they have a room for us.Would love to hear from everyone that checks in on us. Your support goes alot further than you know.So sign the guestbook...I forget to post this earlier but we almost lost our dog.She vomitted up 5 dimes and 4 pennies.She was going downhill.Took her to the vet and we thought maybe some coins were causing a blockage.No more coins but her hemocrit (red blood that carries oxgyen thru-out your body ) was 8..Average is 32-57.She was dying and needed a blood transfusion and stayed at the vet hospital for 2 days.She threw-up 54 cents but cost us $900.If we did'nt have good ole Uncle Sam $$$$ she would of died.I swear if we did'nt have bad luck we would'nt have any.Okay we need prayers big-time.Take care everyone and will update later.
Okay lets see if I can post this without losing it...
Kaitlyn Tommy
Monday March 20th
8:30 Labs 9:00 Labs
9:00 Echocardiogram 9:45 Echocardiogram
9:30 Appt. w/BMT Dr. 10:30 Appt. w/BMT Dr.
1:20 Appt. w/cardiology 1:40 Appt. w/cardiology
3:00 EMG 3:30 EMG
(painful nerve test for carpel tunnel syndrome)
Tuesday March 21
10:00 Appt. w/ortho Dr. 10:15 Appt. w/ortho Dr.
this includes x-ray of the hips,knees,back (Tommy has staples in his knees and we will see if they need to come out)
3:00 Appt. to go over EMG 3:00 same
Wednesday March 22
10:00 Bone age xray 10:45 Bone age xray
11:00 Appt. w/Pulmonary 11:15 Appt. w/Pulmonary
Thursday March 23
Both Tommy and Kaitlyn will be sedated for their MRI of their brain and neck.
Friday March 24
9:00 Appt. w/OT 10:00 Appt. w/OT
Saturday and Sunday we get to sleep in...
Monday March 27
9:00 Appt. w/Neuropsychology 9:00 same
3:15 Appt. w/Neurology 3:45 same
Tuesday March 28
2:00 Appt. w/Audiology 1:30 same
2:45 Appt. with ENT Dr. 3:00 Appt. w/ENT Dr.
Wedneday March 29
Nothing...
Thursday March 30
1:45 Appt. w/Endocrine 1:15 Appt. w/Endocrine
This is to go over the bone age xray
Sunday, March 12, 2006 8:15 PM CST
sorry so short!!New Photos!!my laptop got shut off when i was writing so thats why its so short but new PHOTOS
Sunday, March 12, 2006 8:10 PM CST
This layout is from WhateverLife.com; get yours today!
Sunday, March 12, 2006 8:10 PM CST
This layout is from WhateverLife.com; get yours today!
Saturday, March 11, 2006 11:26 PM CST
This is gonna be short.I have posted and wrote a long entry but it disappeared and my fingers are tired...NEW PICTURES.....I will post their schedules this week.
Susan
Wednesday, March 8, 2006 9:02 AM CST
Hello..
Tommy had a wonderful B-day and a nice party.Him and Kirstin came down last week with a cold and took both of them in to the Dr. and whatever it was is viral..Tommy has missed 8 days of school.I need him to be in excellent health on our return trip to Minnesota.We are leaving March 16th to drive back...It takes 24 hours of driving to get there.We will stop at my brother-n-laws house in MO for a short visit.Tom just got the kids scheduled fax to him at work.We have Dr. visits from March 20th thru March 30th.I will post their scheduled as soon as I can.I am very excited to see everyone and find out about the kids enzyme level.They are gonna be in awe about Kaitlyn..She was 7 months old thru transplant and now she stands as tall as Tommy.My 2 angels sure have been thru alot and still need so much more but I will live today and not worry about tommorrow. Susan
Thursday, February 23, 2006 7:26 PM CST
hello this is kirstin towmorrow is tommys b-day he is turning 9 i made the soft ball team at my school we are the lady jags kaitlyn is doing well one of our best friends grandma just died john o brien his grandma died if u ever meet john he is the nicest guy in the world i have a website if anypne wants to go on it it is www.myspace.com/kirstinspace5
well thats all i have to say
love
=D Kirstin
Saturday, January 28, 2006 10:01 PM CST
New Pictures!!!!
Everyone is doing good..Kaitlyn heart surgery was cancelled.I got a call a week before Jan. 18th and was told that the device used to close the hole had been recalled.I asked if their had been any deaths or bad side affects recently and they told me the manufacture wanted to make the device better and that their had been no deaths. Also the surgeon broke his leg and would'nt be back to work till early April.Needless to say we were shocked about this news.Everything happens for a reason and I am releived that it did'nt happened.We are returning to Minnesota for Tommy's 7 yr. post check-up and Kaitlyn's 2 yr. post check-up sometime in March.We will be gone for 2 weeks.I also have in the works for Kaitlyn to have surgery to remove her port,hernia repair and the heart surgery.I am more comfortable up there too.Can't beleive how time has gone by so fast.Tommy's b-day is Feb. 24th, he will be 9.I remember we he was dignosed with MPS and never thought he would have many b-days. He is a miracle!!!Kirstin 2nd semester report card was A/B and 1 C in math.We are so proud of her.Catholic school is alot harder than public and she is doing awesome.Volleyball is over and now she is trying out for softball..Well let me get this posted.My laptop is making a funny noise and I don't want to lose this...We love hearing from everyone..I will post with more news on our trip.Any MPS families going back to Minnesota around March 17th let me know....Love Susan
Wednesday, December 14, 2005 5:51 AM CST
I know this update is long overdue..Let's see where I begin.Kirstin is a 6th grader at Sacred Heart Catholic School. She made the A/B honor roll the 1st semester.Also she is on the volleyball team right now..Adjusting from public school to private was a little hard but she is doing great now..Health wise she is excellent..Now onto Tommy.He is a 1st grader in a TMH (traninable mentally hannicap) program.He is doing great..Before this placement in school Tommy hated going to school now he LOVES it.He is getting more speech therpy this year and his vocabulary has been expanding..We are so proud of our son..A few monts ago we had his x-rays done on his hips and knees. His knees that have the staples in them are improving and his hips still need to have surgery. We have been disussing this issue and as of now its still on hold.We are taking a trip back to Minnesota sometime around Easter break.When we meet with the ortho Dr. then we will make another decsion about his hips..For someone that needs hip replacement Tommy sure does get around great.He is still a little guy (height wise).Kaitlyn is a little bit taller than him...Miss Kaitlyn Jewel what can I say except she is doing great being 2 yrs. post CBT.Her enzyme level was checked about 3 months ago and she still has NORMAL enzyme level!!! I take her to therpy 4x a week...Her speech is coming along..If she would just wear her hearing aids all the time.She pulls them out and I go on a hunt to find them.She is scheduled for heart surgery on Jan. 18th here in Jacksonville. I feel confident with the surgeon but a little nervous about the anasistha (sp.wrong). We are meeting 2 weeks prior with this Dr. and if he has never put a MPS1 child to sleep I will back out.Her PDA will be closed for this surgery.They said it was an outpatient but with all her problems we may have to stay 1 night which is fine with us.Her hair has not stop growing and curly, I will try to post some pictures. Everywhere we go everyone stops and looks at her hair...She looks like an angel..It must be from the chemo....Life is still crasy for us always on the go with therpies, schools and Dr. appt it never stops...And I have to follow up with everything because somehow others don't.I mean it is there job but opps they forget..Not me I come so prepared to every Dr. appt, I just wished I have some kind of case manager to help me, having 2 kids with a terminall illness has only made me stronger and I am such a BIG advocate that I thought you would get help from a social worker but NO I get no help fom anyone.I also found out that Dr.Kivitts died last week.He was the Dr. that pioneered BMT for MPS1.Without him I don't know if Tommy would be with us today.What an awesome Dr.,to know....And many kids I checked on also passed away this year. May their families find peace this season...We would love it if all would sign our guestbook. I see lots of people check in on us but seldom do you sign the guestbook. All of your support goes farther than you will every know..Merry Christmas and Happy New Year to all....Susan
December 18th Tom and I are celebrating our 12 yr anniversary...!!!!
Friday, August 12, 2005 8:58 AM CDT
HAPPY BIRTHDAY MOMMY YOU ARE THE BEST MOM EVER TO LIVE ON THIS WORLD. TOMY JUST STARED SCHOOL THIS IS THE WRITE SCHOOL FOR HIM. HE IS GOING NOW GOING TO A GOOD SCHOOL HE WALKS UP TO THE ROOM BYE HIMSELF AND MY MOM HAS TO BRING HIS FOOD SO TOMMY IS ALWAYS LIKE BYE MOM BYE. I START SCHOOL MONDAY AUG 15 AT A CATHOLIC SCHOOL SCARED HEART I HALF TO WEAR A UNIFORM AND IM NOT USED WEARING A UNIFORM . WELL I HAVE TO GO WISH MY MOM A HAPPY BIRTHDAY KEEP US IN YOUR PRAYERS AND WE WILL KEEP YOU IN ARE PRAYES LOVE KIRSTIN
Sunday, June 12, 2005 10:28 PM CDT
Soryy for the lack of update..Let's see where I begin around the middle of May all the kids were sick.Kirstin with a sinus infection and bronchsis, Tommy with an ear infrction and bronchsis and Kaitlyn had bronchsis too..Kaitlyn ran a fever on a Sunday and by Monday she was put in the hopital because of a positive blood culture in her blood.They started her on IV antibotics. For the next 3 LONG days in the hospital all her blood cultures came back negative. She was released and we gave her home IV antibotics for 10 days. It had been over a year since we had to use her port at home. This was easier, only 1 medicine. It took about 2 weeks (first part of June) for everyone to get better. Thank God Tom or myself got sick..Lets start about Tommy- He was scheduled for his 8th set of ear tubes to be replaced on May 26 but because he was sick it was resheduled for June 20th.Lets pray for a smooth surgery. If I was in Minnesota for this I would'nt be nervous.They just don't know Tommy's airway like the Drs. in Minnesota do. Anyone that has a child with Hurlers would understand my concern.He missed his Kindergarden graduation too, instead Mommy and Daddy took him to his favorite store, Walmart.He got some new DVD's and Hotwheels..I know he loved that better.He will be a 1st grader in August..He ask about school so I hope he will like it when it starts.He will be going to a new school too.On to Miss Kaitlyn...She is growing up so fast.Her hair is still curly and everyone comments how beautiful it is.I guess one good thing from Chemo is you may get beautiful curls..She is saying so many new words and if you have chocolate in your hands she will sign "more" so fast its cute.She loves the pool.I have some cute pics of her and Kirstin I need to post.To look at her you would'nt think she had a terminal disease.She is my little angel!! Kirstin passed the 5th grade with flying colors..She will be going into Middle school.Growing up to fast..She is on a swim team , they started the first part of May and swim till July 31st.Practice everyday for 2 hours and they have meets on Thursday. Her times are so much better than last year.I tell her she will swim for the Oylimpis one year.She will be having a B-day in July..We will be heading to Orlando this Sat.(18th) to go to Wet-N-Wild with her swim team.We are excited!!!Also we have been blessed by so many wonderful people in our life lately...A church bought us a new refrigator (w/a ice maker), a girl scout had a diaper drive.Others have helped with bills.I tell you if we did'nt have support like we do I think I would go crazy.I hav'nt worked outside the house in 7 years. With Tom's job having the health insurance he has to stay there.His hours are so crazy though..He is off on Sat. and Tues. He never has 30 hours off in a row.It makes family time hard but somehow we manage to stay sane.This year we will celebrate 12yrs together.I read were 90% of marriages divorce because of the mental, physcial and financial burden it takes on due to a childs health,imagine that and multiplty that by 2. We are more in love now than ever..We truly are soulmates...Some great news...We now are a Foundation...It is called, The Ries Foundation, non-profit orginization to help raise awarness and support other's with children who have Hurler Syndrome. The goverment approved it..If you know anyone who would like to make a tax-deductible donation let me know.The weather is really hot..Our first storm came thru this weekend..We just got some rain.(Lisa remember last year!!!) Tommorrow Kaitlyn has a Dr. Appt with the BMT Dr. here.They are going to draw her labs for donor counts and enzyme level.I have to wait about 7 days for the result.My stomach is already in knots.You are never out of the woods when you have a child with Hurlers.Boy if I could only have a normal life...My camera is not working at the moment so I can't load any new pics..Anyone going to be in the Jacksonville area on July 30th and would like to play in the 7th Annual Tommy Ries Golf Tournament let me know.This tournament is awesome...I think I have covered everything...I will update sooner next time. Susan
Thursday, June 2, 2005 11:53 AM CDT
Hi sorry we have not updated in a long time kirstin is going to the 6th grade next year tommy is going to first grade kirstin swimming has started back up thursday may 26 they had there first swim meet she had all the strokes she had to do butterfly back breast and freestyle she got third in freestyle and backstroke her relay team did not do so good in there relay her first time ever getting first she got in her second worst stroke butterfly are whole entire family has been sick kaitlyn went in the hostital tommy and kirstin has had this cough kirstin had broncides but we went to the docter before and the docter said that she had swimmers ear well i got to go love kirstin
Tuesday, April 19, 2005 10:06 PM CDT
One year ago tonight I remember watching out my window at the Ronald McDonald House a mean thunderstorm. I also remember dreaming about where we would be a year from then..Just check out the new pictures and my dream came true!!!!
The kids are doing great..We are having a great time with our new puppy. We named her Laney. Kaitlyn is still going to therpy 4x a week. Kirstin and Tommy are doing good in school.Only 5 1/2 weeks left..Yeah!!!The weather is awesome.I only wish it would stay these temps year round.Please keep my brother, Steve and Paula in your thoughts and prayers. Their oldest son (27) died last week. My brother was his step-father for 16 years.This past week has been rough.Thanks to everyone who keeps checking in on us.May you know that your support for us means ALOT.....I still have a million things to do with both kids and their surgeries, but right now I will live today like their is no tommorrow........Susan
Thursday, April 7, 2005 10:17 PM CDT
New Photos..
Just wanted to let everyone know that Saturday April 9th my little Kaitlyn Jewel will be 2...Everyone is doing good ..Will update soon.
Wednesday, February 23, 2005 10:23 PM CST
New Photos..
Gosh it almost March and I still have'nt given an update since last year...My days are so busy...Lets see where do I start...
Kaitlyn is growing by leaps and bounds...She is a very happy and good toddler..I can't believe one year ago she was in the hospital fighting the Roto virus..She has been healthy thru this winter season..Toady she woke up with a stuffy nose...This is the 1st time ever she had a stuffy nose..No fever, thank God..She is my little monkey..The higher the chair or table the better, she loves to climb..She goes to therpy 4x a week.We have been going since last June and she loved it..Now within the last 4 weeks she is a little whinny and does'nt want to separate from me..She has never acted out before, so now I walk back with her and stay a few minutes then leave.I know this is an age thing and it will pass..Our dr. visit are now 2 months apart..We still go for labs once a month to check on counts and have her port hep-locked..We did see her heart Dr. here in Jan. to see if her PDA in her heart was still opened and it is..I was told our option and now I am waiting for another appt. to discuss when and maybe where the surgery should take place. I have a lack of trust here locally.Right now her heart is okay but something will be done about the opening of the PDA. Her speech is coming along too..She uses words along with sign langauge...Her favorite is cookie!!!! Her hair is still very blonde with LOTS of curls..Everyone comments about her hair and I love telling them just how she got it..She is my little angel and growing up too fast..
Now for Tommy...I must tell you that tommorrow Feb. 24th is his birthday...Tommy will be 8 yrs. old..I wish I could turn back time..Not that I don't love celebrating another b-day with him I just know that the older he gets the more medical problems come.We met with his genetic Dr. here to discuss enzyme replacement therpy and got the same answer we recevied from his Drs. in MN. They both have told me that Tommy has the enzyme and yes it is low but right now he would not benefit from ERT. Why not??? I ask...This is where I never get an accurate answer..I keep pushing for an answer but still they tell me his body has the enzyme and it is doing its job...I would love to hear from others who has had both a BMT then ERT...On to school..He goes to school 2-3 days out of a week. For health reason he never makes a 5 day week..He kinda likes it but I am still trying to get him the right services...If you only knew what I have gone thru to get him where he is today..So if you like to wish him a Happy B-day in the guestbook...
Now on to my dear sweet Kirstin...Still a 5th grader and doing good in school...Finally her cast came off..She still has to wear a splint for 7 weeks...She is ready for it to warm up to go swiming...I tell you this past week I have had my A/C on because it was warm..Not much more to say about her, a healthy child with a heart of gold...
My mom is still recovery from her brain surgery..She has had a low grade fever ever since her surgery (Jan.12th), today her Dr. told her it could take months or even a year to fully recover..She still has another anyerism in her but the surgeon told her it was'nt in the brain and it was so tiny that if something happened she would be able to get help..So he will look at it in a year and go from there.Let's just pray nothing will ever happen...
I will say that the week before the Super Bowl we had so much fun...Our city sure was pretty...I have more to say but for now I need to get some sleep....It's now midnight...Tommy is 8 ...He was born at 7:43 am on a rainy Monday morning...I arrived at the hospital at 5:30 am, he was a very short delivery..I just want to freeze time!!!!
I will try to update more often...Until then we would love to hear from everyone.....Susan
Friday, December 31, 2004 0:11 AM CST
New pictures...
I would like to wish everyone a Happy New Year....Our Christmas was great...Kirstin got a kitten her name is Shelby..Kaitlyn did'nt like it at first and would scream but now she is touching her and laughts.Kaitlyn is running and babbles up a storm.. I use some sign language with her.She is climbling and running everywhere...The weather here has been nice..High in the 60's and 40's at night.My moms surgery has been changed to Jan. 12th to remove the anyurism.(sp?)..We have some family coming down for the New Year and my brother and his family moved back from South Carolina..Remembering this past year has been overwhelming, but I can honestly say I would'nt of changed nothing..Lets make a toast to a Happy New Year!!!!!!
Monday, December 13, 2004 10:45 PM CST
New Pictures
I can't believe it is almost Christmas. I remember this time last year we were away from family and friends during the hoildays.I can honestly say it was worth it. To see Kaitlyn now you would never know what she has gone thru. We had our 2nd annual Kruisin 4 Kaitlyn poker run this past Saturday. It was a little chilly but a great day..Thanks to everyone who came and helped out. We really have alot of people who support our family.Kaitlyn is doing great. She has a Dr. appt. this Wednesday.Our visits now are monthly until her port comes out. Tommy is doing good too. Kirstin can't wait till x-mas. Their last day is this Friday. Off for 2 weeks, Mom is happy because we get to sleep in...All 3 of my kids sleep very well,thank god....My mother has 2 brain anyerisums,she will have surgery to remove the big one on Jan. 4th in Gainsville, Fl. Keep her in your prayers.. Tom is on vacation this week.It is nice because I can get more stuff done without having to pack up the house, I just go and the kids stay home. I will say I miss the snow. Its cold here now,considering a week ago we had our AC on. The snow is so pretty and everytime we got some in MN I would sit by the window and just watch it.
Susan
Wishing everyone a Merry Christmas and Happy New Year!!!!
Tuesday, November 2, 2004 12:47 AM CST
Its been some time since we have updated the page...Our trip to Minnesota was nice but we did'nt get the news we wanted...I will start off by giving the good news first and that is Kaitlyn's enzyme level is NORMAL..That means she has the enzyme she was born without...Tommy on the otherhand has declined ..His enzyme level has stayed at 5.2 for 2 years and now it is 3.8...With that said we focus on his brain and liver to see if any deposit have formed and as of today his brain and liver have no deposits.That is good news I just wish that he too could have normal enzyme level.As far as donor cells Tommy has a decline and Kaitlyn did too..I don't understand why Kaitlyn's donoe cellls drop and her enzyme went to normal...The drs. can't tell me neither...But with all my knowledge about Hurlers and BMT all these kids need is the enzyme...Tommy's hip surgery is still on hold. Kaitlyn's PDA vavle in her heart is still open. Kaitlyn's EMG (carpel tunnel) is normal..Tommy's has maintain itself since surgery in 2000...Both kids have hearing aids now..Thanks to a local doctor...I am still not happy with the school here for Tommy.Kaitlyn goes to thepry 4x a week. She is growing up so fast...She will be taller than Tommy in a year...Kirstin is doing great in school..She made the A/B honor roll..She loves being a saftey patrol..We are also haveing a 2nd Krusin 4 Kaitlyn December 11th...A poker run...We are struggling so much now..We arrived in MN on Nov.1st last year..I thought that was hard...Now reality sets in and the numbness of all this past year is wearing away...The medical bills, gotta laught about it because how can they think we can pay for all of this.Well I need to run and pick up Tommy and Kirstin from school..I have more to tell and will update later...Please say a prayer for my Mom.She has fallen very ill and needs some extra thoughts her way.Right now she is in the hospital..Found out several weeks ago she had 2 mild strokes...Anyways sign the guestbook we love hearing from everyone....Also I posted NEW PICS.......Love, Susan
Wednesday, September 1, 2004 10:51 PM CDT
UPDATE SEPTEMBER 6
We survived the Hurricane....We have been without power for 18 hours...My laptop is still running from its battery..All I can say about this was WOW....We have alot of trees down and the woods next to my house is flooded..I have never seen so much wind before yesterday. I have lived in Jacksonville for 32 years and this was a bad storm...Over 1/4 million people are still without power in Jacksonville..We were lucky....People down south are not so lucky...I have'nt been able to watch the weather channel but I know another Hurricane is out there...His name is Ivan. He is already a Catergory 4 storm...We leave Saturday to return to MN. I just pray now that when we return we have a house...They don'nt know where Ivan is going but all I can say is Stay Away from us....Susan
Day 284
WBC 10.86
Hemoglobin 9.6
Platelets 453
Gosh a year ago we had just got back from Minnesota from Tommy's knee surgery and we were about to start the process of Kaitlyn's transplant.We have come so far...many blessings along the way. As I sit here today our lives once again could be changed forever...Hurricane Francis is out there and next week this time we may not have a home. Tommy finally started kindergarden today..I am not satisfied right now with his program and to be honest if I told you the entire process, your jaw would drop. I am not a happy mom at the moment.Kaitlyn went to clinic Tuesday and got IGG/IV..This was her 2nd infusion. She will get one more at the end of the month...This helps fight off infections.Kirstin is doing great in school She is a safety patrol and loves it. Her grades are good too. School is closed Friday due to the hurricane. We are scheduled to fly out a week from Sat.on 9/11...We have our weeks worth of appts. already and they set the times up together with both kids. So this way Tom and I won't be running in different directions ..Anyone who has gone back for annual checkups knows how long of a week it is...I am excited to find out how much enzyme both kids have.Kirstin will stay with my mom this trip. We got a really good deal with our tickets..Thanks to my social worker in Minnesota.I wish we had all the support here like we do in Minnesota. Oh i almost forgot..Kaitlyn has been walking from holding on to everything, but today she walked all by herself..Kistin and I sat on the floor and she walked back and forth to us...I give her less than a week and she will be off!!!! Her hair is getting longer and it is still curly...This past month 2 dear friends passed away. I never take anything for granted but it really was a hard 2 weeks...Went to Gary funneral on a Wed. and sat with my friend Terri and she died the next day from a heartattack. That was a sad week for alot of people...Both had spouses and young kids...Sometimes things don't make sense but you pick up and move on.I have noticed alot of people check in on us we would love for you to sign the guestbook...It so nice to read the guestbook...I will post as soon as I can...We may lose power and our house too. we are going to leave Saturday to go to my moms.She lives 10 minutes from us but her house will be safer for all of us. If you don't hear from us, as soon as we get to MN I will update.Pray for a safe trip and one with good news...We are still on our roller coaster ride with life and at some point I want it to slow down...Thanks for checking in and until next time, Peace.....
Tuesday, August 17, 2004 8:19 PM CDT
Day +269
WBC 14.2
Hemoglobin 10.0
Platlets 514
NEW PHOTOS
Kaitlyn went to clinic today and everything is going good. She is still being tapered from her CSA..She is changing daily..She is walking around furniture getting into the frig., pulling everything out of any cabinet...This is what a toddlers does and I am just fine with it...She keeps all of us on our toes...Her hair is beautiful. When we go out everyone says look at that babies hair or I wish I had her hair...We are returning to MN Sept.10 or 11th. I really don't want to fly on 9/11 so hopefully we can leave on the 10th..Tom and me and Tommy and Kaitlyn are going back this time for Tommy's 5 yr. studies and Kaitlyn's 1 yr. studies...We are going to discuss Enzyme Replacement Therpy for Tommy. School started here and the days are really busy. Hurricane Charley scared all of us...Who knows if it would of came our way if we would have a house right now.Our 6th annual golf tornament was a hugh success. Thanks to everyone who was there..We have started a foundation. It is called The Ries Foundation Inc., I hope to raise awareness on Hurlers and how it affects familes.I also want to help other families who struggle daily with this illness.Tommy is doing good. He has not been place in a school yet...Thats a long story so I just hope it happens soon....Thanks for checking in on us and I will update sooner....Susan
Monday, July 26, 2004 1:13 PM CDT
Day + 247
WBC 8.4
Hemoglobin 9.9
Platelets 545
New photos..
This month has really gone by fast...School here starts August 9th...Our annual golf tournament is August 7th..Two weeks ago we took off and went and visited my brother in South Carolina then went into North Carolina.It was really nice and all the kids were great...Kirstin turned 10..Kaitlyn continues to get labs checked every 2 weeks...At our next visit it will be changed to every 3 weeks...Her hemoglobin was hanging around 9.2 and that is low for her so to be on the safe side they check her labs every 2 weeks....Kaitlyn's hair is really coming in fast now...It is really curly..She is such a happy and good baby...She never cries and has always sleep all night...Don't have much else to report,this is good...Things are moving smoothly....Take care and would love to hear from everyone....Susan
Thursday, July 1, 2004 7:27 AM CDT
Day + 222
WBC 12.7
Hemoglobin 9.2
Platlets 771
New Photos
Well things have been pretty busy here. Kirstin left yesterday with my parents to Virginia for a family wedding. Tommy and Kaitlyn have been to the ENT dr. and Heart dr...As far as their ENT appt. the next step is to get help paying for the hearing aids. Until then we wait...Yesterday we sat for 3 hours to find out that Tommy's heart is the same, from Aug.03 which is good news,he still has issues with his heart but nothing has pogressed that requires new intervention.Kaitlyn on the other hand did'nt get good news. We were told that she has PDA. How I understand this is that when you are born certain valves close off at birth or in the first few weeks of life. Well she had an echo done Nov.03 and April 04 and this was not a concern but in yesterdays echo this valve is opened. Her dr. here called her dr. in MN and they discussed this and we found out last night that we can wait till her return this Sept. and if it does'nt correct itself on its own then she can have surgery to correct it. Just one more thing for us to worry about,not like we have enough to worry about....Also 2 weeks ago Kaitlyn woke up with a fever. By 10am that morning I had arranged the 2 other kids to family and friends and packed my bed because I just knew it would be a hopistal stay. Well as it turned out they do thing different here. We went to clinic and they drew cultures and gave her an antibotic thru the port and we were home by 3pm....The next day we went for another antibotic and were done. Nothing came of the blood culture and she did'nt have no more fevers and the good news was no hospital stay!!!..A few days later I was in her mouth and counted 3 new teeth. Her bottom 2 have been coming in for some time and now her top 2 are coming in and a molor in the back. I bet that is why she had a fever...Along with this she started to have a lite rash all over her body. She had been coming down with her taper of CSA and even though we may never know because a skin biopsy was never done they went back up on her CSA and as of now no taper...They felt it could be the start of GVH butlike I said we will never no. So now she continues to take CSA. I told them I use ALL detergent and maybe since I had used TIDE on a couple of loads maybe that is why she broke out in a rash. Who knows...All I can say is if anyone out there has had a child on oral CSA you know how AWEFUL the taste is and she takes it in stride and never complains....Now on to some better news....Kaitlyn has started Physcial Therpy, she is doing good. In 2 weeks she is now crawling on all 4's (before she would crawl like a snake), and can sit on her own from a crawling postion...Way to go Kaitlyn!!! She is such a happy baby...
Last week Kirstin and me along with her swimteam went to Blizzard Beach in Orlando. Its about 2 1/2 hours from us. We had so much fun and I highly recommend this Water Park to everyone...It was nice to get and and do something different...
Kaitlyn goes back to the dr. in 2 weeks if nothing happens in the meantime. Kirstin's b-day is July 14...She will be 10...Where does time go...Take care and we would love to hear from everyone...Happy 4th of July...Susan
Thursday, June 10, 2004 10:24 PM CDT
Day + 201
New Photos!!
W.B.C. 11.03
Hemoglobin 9.8
Platlets 592
Its been awhile since I have updated...Kaitlyn went to clinic this past Tuesday and her labs looked good.She starts her therpies next week. We have an ENT appt. for Tommy and Kaitlyn at the end of the month for their hearing aids and also a follow up with the heart doctor for both of them.. Also we have started a taper of her CSA drug and should be off of it by July 16th. Yea!! We did find out that her donor cells are still holding at 85%...We also found out that her enzyme level dropped some...She still has plenty to do the job but it sucks knowing this.We will be going back to Minnesota the 2nd week in September for Tommy's 5 yr. post BMT and for Kaitlyn's 1 yr...Even thought Kaitlyn's 1 yr will not be until Nov..We just can't do it at both times.... The kids are all doing great...Kirstin is improving her times at her swim meets. We will be going at the end of this month to Blizzard Beach in Orlando with her swim team...Its a water park...Thanks for checking in.....Susan
Wednesday, May 12, 2004 9:14 AM CDT
Friday NEW PHOTOS....
Day 172
WBC 12.3
Hemoglobin 11.7
Platlets 702
All I can say is wow look at her counts. This update is overdue..So much has happened since we got home I have no time to sit down and do an update. So I am going to try right now while Kaitlyn is napping and Tommy is watching TV..We had a very crazy first week home. Kaitlyn's hemoglobin was a bit low when we left and continued to fall. To make a long week in the hospital all she needed was some red blood..They thought she had fluid around her lungs, GVH in the gut or usclers in her stomach.. All my baby had was low hemoglobin..After she finally recevied some blood she started eating again and breathing better..The scope showed no GVH or usclers. I told them what I thought about everything and told them that if her hemoglobin drops below 9.0 she needs to be transfused.Instead of 8.0...All I can say is I am so happy that she is doing much better and she continues to..That week was aweful...She is now taking whole milk instead of formula...We are trying to expand her food, but she is a picky eater just like her brother, Tommy.Kaitlyn had clinic yesterday and we go next Wed. just for labs. Today she saw a Dr. and really nothing was discussed. I can't wait till the day when things slow down some and weekly visit turn into annual ones. I did get referrals for therpies so I am going to work on getting them started.I will go back to where Tommy went.Since they all know me and Hurlers at least this way I don't have to explain everything over and over again.One good bonus I guess.Then we need to set things up with an ENT for their hearing aids. I know we will run into problems because the BAR test that was done on both of them was not done here and everyplace wants to do one.I need a secertary to keep up with all of this..I am also going to work on getting SSI or some kind of assitance for my kids. I tried with Tommy and we were denied everything..I am not going to settle for Denied this time. We are having our car go back because Kaitlyn and Tommy are like having 2 car notes a month and since we are having to pay for a ton of medical stuff we can't afford our car too. Its sad but you do what you gotta do for your family..I also have to think about when I return to Minnesota for Kaitlyn and Tommy. It will be sometime after August. I can't even begin to think about all of this so I won't today.
Kirstin is on a swim team. Right now until school gets out (May 21st) she has practice from 6pm to 7pm. Tommy loves watching her practice. Kaitlyn goes and we sit in the parking lot where she can get some fresh air without having to wear her mask. Noone is in the parking lot and we can still see them practice.Then practice will be from 8am to 10am, in the summer. Yeah Kirstin only has till next Friday left for school..Tommy did'nt go back to school for fear he would bring a cold home to Kaitlyn and I don't even know what we will do for next year for school for him. Thanks for checking in on us and I will try to update better than I did. Kaitlyn is up now so I better post this....Susan
Thursday, April 29, 2004 8:48 PM CDT
Friday...New photos...Kaitlyn is scheduled for her scope at 12pm today..I hope there is no GVH..Other than her not eating she is fine..I wish they would give her a food enhancment to stimulate her appetite..Also today they want to put a tube in her nose for feedings..I am somewhat okay with this if it gets her to eat..This is why we are still in the hospital...We are living out of suitcases still and Kirstin and Tommy have not seen me all week...I want to live a normal life but for some reason it's not happening...I am very thankful for the wonderful care we received in Minnesota. All I can say here is it is VERY different..She did get red blood last night since her hemoglobin got down to 8.1..Pray that my liitle angel will start to eat..From looking at her activity level you would never guess that she has'nt eaten in a week now.Well update as soon as we find out what is going on...Susan
well Kaitlyn is back in the hospital again...we had to take her last friday because her breathing wasn't right, she was taking real short breath's and grunting also she wasn't eating anything...so they did an chest x-ray but apparently didn't see anything because they let her out on Saturday. We had to come in Tuesday for lab's which we had set up before we left Minnesota. So they drew her lab's which were all pretty good but we mention that she still wasn't breathing right and still not eating. So he had nutrition come in and talk with us and said to try some Resource which is a high calorie drink that come's in different flavor's, so she gave us some that they had there and Kaitlyn maybe drank 2 ounce's of it. So we thought that she might start drinking that instead of her formula but she hasn't. After she left the Dr. came back in and said that he wanted to do another chest x-ray since they had seen something on the one they done on fri., which no one said anything about...so off we go to get another chest x-ray, after they got the result's on it they decide to admit her to the hospital because they had determined that she had fluid on her lung's...so we thought that could be why she was breathing and not eating good, so I had to take Tommy home because he was being Tommy(a little hell'en) and Susan stayed to take her to the hospital which was across the street. Well finally she got over there and they wanted her to sit down stair's and register her, so she sat there for 15 minute's with Kaitlyn having her mask on not breathing good, finally she got pissed off and told them that they could come to her room to register her. So they ended up giving her some lasix that afternoon to try get some of the fluid's off of her lung's. On Wed. they took her back to do another chest x-ray at 3:30pm to see if the lasix helped, after about 3hrs. after they got back in the room we were wanting to know if they found anything but they said that it had to go down the chain(what ever that mean's) so finally someone came in at 9:00pm and said that they wasn't for sure if she ever had any fluid's on her lung's...we like WHAT! so they are treating her for something that they don't know if that is what they need to be treating her for! So now we were very uncomfortable with them now...now today (Thur) they came and told Susan that they wanted to put a scope in her stomach to rule out that she didn't have GVH...we were like no your not, your not going to put her asleep to rule that out because she really doesn't have any symptom's...Finally our oncology Dr. came over and said that he had called the Drs.in Minn. and he didn't think she had GVH but they wanted to check to make sure she didn't have some other thing's that could go wrong at this time after transplant...so now we are feeling a little more comfortable that they wasn't doing this just for 1 reason...so hopefully they will find out Tommorrow why she is not eating and hopefully either put a feeding tube in if something is wrong or give her some supplement's to help her eat or go back on TPN...it doesn't matter we are just concerned that she really hasn't ate or drank anything in a week...so wish us luck and sayu a prayer fo Kaitlyn that everything goes well tomorrow, we will update tomorrow on how everthing goes...gotta go she has to get some red blood tonight because it was down to 8.1 so we will write tomorrow......
Tom
Monday, April 19, 2004 10:05 PM CDT
Wednesday April 21st!!!!
WE made it home very late last night...I wanted to add the
story the news did and when I have some more time I will give details of a
very LONG day...
www.firstcoastnews.com/news/news-article.aspx?storyid=17611
go their and watch the viedo...Their is no place like home....
Day 149
Kaitlyn went to clinic for the LAST time today. Her counts are good except for her hemoglobin...It was 8.9 on Thursday and today it was 8.6...They were not to worried.. I have an appt. back home next Tuesday. If I see anything like alot of sleep or she is really pale I will take her in sooner. Her magnisim was a little low too so they put her on an oral drug for that. We are scheduled to leave early in the morning to go HOME...Kaitlyn, Tommy and myself will be flying home..The first plane will leave St. Paul, MN at 8am to Chicago by 10am. (The plane has 6 seats)..The 2nd plane will take us into Savananah, GA. Then the 3rd plane will take us into Jacksonville...Arrival should be around 6pm...Kirstin, Tom and Poppy are driving home and should arrive sometime late Wed...Channel 12 news in Jax. are going to be there when I return...Everything is packed and the U-Haul is ready...I am excited and sad to leave the RMCH...Anyone that has stayed here can understand that...We have so many friends here and this place is just awesome.Can't wait to see everyone back home. I do have to tell you that we will come see you. Kaitlyn's immune system is still not where it should be and she can't be around crowds, babies, sick people, animals, the beach...Bascially she will be in her home for at least another 6 months.. I want to thank everyone for getting my house in order...My Mom and Leslie for cleaning it...John O'Brien all I can say is your the man...Well I need to try and sleep I will keep this journal updated because we are no way out of the woods yet but at least we are heading in the right direction...See everyone in less than 24 hours.......Love Susan
Sunday, April 11, 2004 2:23 PM CDT
Day + 141
NEW PHOTOS
HAPPY EASTER!!!!!
The easter bunny was real nice to the kids...Kaitlyn loved putting everything in her mouth....Yesterday here at the RMCH we had a hugh egg hunt. Over 1000 eggs were out there for all the kids to find. Talk about candy we have enough for a year...Tommy had a ball..Kaitlyn will enjoy hunting eggs next year..This past Friday my little angel turned 1 we celebrated with her by cooking out steaks and then we sang Happy Birthday with her with some friends here..She looked at her cake and tried some but about 5 minutes of it she threw up...I guess to much sweet stuff...Oh well at least there is always next year she might like her cake...The count down is on...In 9 more days I will be on a plane heading back to sunny Florida and to be with my family and friends..Without them I don't know what we would do...Thanks a million John O'Brien for all you do and all you still do...Darlene your awesome!!!!Mom your the greatest!!!!!
Tommorrow Tommy and Kaitlyn have appts..Tommy is going to finish up with his immunization shots and Kaitlyn just has labs done...I am a little behind with Tommy shots because I was scared to death several years ago to do them and now we have just 3 more to do and we are finish...Might as well get them done here since they know which ones he needs..After dinner tonight we are going bowling with another family here..It is so nice to get and do things...Thanks to everyone who checks in on us and please continue to pray that we get to go home...Love Susan
Thursday, April 8, 2004 12:10 AM CDT
Day + 138
New Photos
WBC 5.7
Hemoglobin 9.4
Platelets 449
Kaitlyn went to clinic this past Tuesday and her creatinine level was high...This is a # at how well her kidneys are working. She recevied fluids on Tuesday to help flush them. We went back to clinic on Wednesday and also the level was high and again she recevied fluids. Today her level has come down and we did'nt need fluids. I know the problem is coming off steroids and she is not eating that well. I asked today if she needed to go back on TPN( IV food) and they said lets wait a few more days and see what happens. Again the roller coaster ride never ends.Tommorrow Kaitlyn will be 1 !!!!! I hope she will eat some cake...She was born at 1:57am...It is hard to believe it has been a year. I never thought we would be saving her life and I never thought we would be in Minnesota for her 1st b-day.She is such a happy baby. Everyone comments on how good she is.
Yesterday we had a meeting with Kirstin's teacher here to go over her grades. She has all A's and 1 B..Way to go Kirstin. With all she has been thru she continues to do great in school. Tommy is doing fine. On Monday we went to a park and on Tuesday we went to the zoo here. The kids were great. Kaitlyn enjoyed looking at everything. She keep her mask on most of the time. As long as we are not in a crowd she does'nt have to wear it. I wish I had a shirt on that said don't stare a picture last longer. I have said to people that staring is rude...I have contacted several airlines that help out with sick kids. We have something set up for April 20th to fly from Chicago to Savananah, GA...I just need to get a flight to Chicago right now. I am waiting for someone to call me back..They only have 3 seats and the kids need their car seats. So Kirstin will ride home with Dad...I just wish we all could fly home...Well everyone hae a Happy Easter and sign the guestbook to wish Kaitlyn Jewel a Happy 1st Birthday. Love, Susan
Thursday, April 1, 2004 1:42 PM CST
Day #131
W.B.C.- 6.5
Hemoglobin - 10.6
Platlet's - 462
New pics. added 4-1-04
We took Kaitlyn to clinic this morning and received some great new's...We get to go home the 16th of April , finally, we are going to check into flying Susan and the kid's home, we just think it would be easier and better on Kaitlyn....APRIL FOOL'S(haha)....no just kiddin, if anyone has a hook up with cheap airfare please let us know, we are going to check into some that the hospital recomended, we are so happy to be coming home. Kaitlyn goes back to clinic Tues. for lab's and to check her blood pressure, they also took her off of her blood pressure med. (Amplodphine).Our last visit with Dr. Orchard is April 15th and they will draw more RFLP's then and check her donor count. We just hope her engraftment stay's the same or goes up, we don't want her to have to go back on steriod's. Everyone is doing good, Tommy has an ear Dr. appt. tomorrow, Dr. Orchard want's us to take Kaitlyn over there too because he seen some fluid's in her ear's and recomended that she get tube's in before we leave..we agreed that was a good idea. We will let you know when. I would like wish a good friend of our's Fred a speedy recovery from another broken ankle he got when he had to hit his brake's and hit some sand and had to lay his motorcycle down to avoid hitting the idiot in front of him, Fred help's us out alot with Tommy's golf tournanment and we really appreciate everything he does....also our friend David just had knee surgery so we wish him a quick recovery, maybe Fred and him can do there thearpy together(haha, they both work with me)also want to say way to go Gary...Gary has cancer and so far is winning the battle, can't wait to get over there and see him...we got to go we well keep you updated and please sign the guestbook it's good to hear from everybody....Take care and hope to see some of you soon............Tom
Monday, March 29, 2004 12:36 AM CST
Day + 128
New Photos
WBC 6.6
Hemoglobin 10.5
Platelets 472 **** Way to go Kaitlyn
Sorry for no update but not much to report here..All the days run into one another and we are so ready to GO HOME!!!! Kaitlyn is down to .08ml every other day on her steroids and this Friday is when she should come off of them. We have been going to clinic for the past 3 weeks for labs only...Have'nt seen her primary doctor in almost a month..We have an appt. with Dr. Orchard this Thursday.I am going to ask the big question of when does he feel we can go home..I know what is keeping us here is because when she came off steroids a few months ago her donor cells started to decline I pray this does'nt happen again.She is still holding steady at 83% donor cells right now.We can live with this and so can she..She has the missing enzyme in her body and that is what counts...
Last week we had some warm sunny days...It kinda felt like Florida here the highs were close to 70 degrees...Tommy had fun outside..I think every kid at the house was outside at some point...But tonight I heard it might snow...What is with this weather....Kirstin went to the Mall of America on Friday with her dad and Uncle Matt. She had a blast...Too bad we all can't go, that would be one too many germs for Miss Kaitlyn...I am trying to stay paitence thru all of this but we deserve a break sometime from this medicall stuff. The kids need hearing aids and I found out our insurance won't cover this and we have tried for Medicade and SSI but have been denied..I swear I guess you have to be dirt poor to get any help.Tom still has his job but his FMLA money is not coming in no more. He can stay until May but if we are still here he will have to go home to work...Thank god for Mr. Income Tax.....I know when we get home I am going to have to do something as far as geting some medical assitance for my 2 children. I really dread all the work that lies ahead. I know from Tommy that it is'nt easy getting all the therpies, dr. appt...Up here in Minnesota I have no problem getting all the right stuff but for some reason back home you have to climb over too many mountains to get what is so right for your kids. Too bad I can't just get a full time job and let the kids do normal things like daycare....Thanks for checking in on us and we love it when you sign the guestbook...Love, Susan
Friday, March 19, 2004 9:48 PM CST
Day + 118
WBC 7.0
Hemoglobin 9.9
Platelets 340
NEW PHOTOS TOO...
Kaitlyn went to clinic yesterday...Everything is going smooth at the moment. We are down to taking her steroids to once a day. Now we hold our breath to make sure her donor cells stay around. They drew for engraftment last Monday but she was still taking steroids 2x a day. Overall Kaitlyn is doing good from a transplant point. She sure does'nt miss a feeding. The pictures that I posted show how much hair she has on her back. This drug, CSA, causes hair growth everywhere. She will be on this drug till late September, its to help with rejection. Tommy is doing good. He keeps us busy all day...Kirstin is on Spring Break now. The Ronald McDonald House has some activies for them next week. All I have to say is without this house I don't know what we we do....They are awesome!!!!!We have a visitor now for a week. Tom's brother Matt flew in tonight..Tommy will sure keep him busy in the car room...Not much else to report...Just pray that Kaitlyn will hang on to all her donor cells with this new adjustment to steroids....Thanks for checking in...We love hearing from everyone.....Susan
Tuesday, March 16, 2004 2:02 PM CST
Wednesday
Happy St. Patrick's Day to everyone. We woke up this morning with about 2 inches of snow...I just posted new photos too.....Kaitlyn goes to clinic tommorrow...
Day 115
Kaitlyn went to clinic yesterday. All her labs are good. We did find out her lastest on her enzyme level. She is now at 29.3 for her enzyme..Last check was 16 I think. This is great news. We were told she is 70 onor for her enzyme. Her donor enzyme was 44...Yesterday they drew labs for her engraftment and sometime next week we should have the results.I hope she is up from the last ones of 83 ngrafed.Her appetite is great and she weights now 26pds 12 oz.She has hair everywhere on her body...Not much else to report..It is getting really tiresome up here. Not much we can do with Kaitlyn. She can't be around people and if she is she has to wear a mask. So we just stay in our room 24/7...I can't wait till all this is behind us and we can be normal again,if that is possible.Thanks for checking in...Susan
Thursday, March 11, 2004 1:03 PM CST
Day + 111
New Photos
WBC 11.4
Hemoglobin 9.4
Platlets 270
This is good...Her hemoglobin is up...I have no news yet on her enzyme level that was drawn on Monday. No clinic till Monday!!! Kaitlyn is such a great baby.We were in clinic for 3 1/2 hours today and she stayed happy the whole time. They had a hard time getting blood from her line so we went to another place and they pricked her foot..She cried but after it was done she was happy.I am so proud of her having to go thru all this and she always has a smile on her face.Tommy is fully recovered and the blood has stopped dripping from his ears. We are getting things together for both of them to get hearing aids.I just wished when we get to go home the health care would be as smooth as it is here.
The weather turned cold again today...It felt like 0 when we went to clinic...This weekend it is gonna warm back up to the 30's...Not much else to report and I like it that way. Thanks for checking in on us and we love reading the guestbook.... Love Susan
Monday, March 8, 2004 9:24 PM CST
Day + 108
New photos
Tommy had his surgery today. It was delayed some due to the person that was ahead of him. They were late arriving because of weather so Tommy's surgery was delayed by an hour. He went in about 3pm and was in recovery by 5pm.He has severve hearing loss. We knew this, hopefully we can get the hearing aids in and he will allow them to stay in. I have no idea if insurance will cover them either.They will call us to set up something. Tom told me that when he arrived back in recovery the nurse told him Tommy took off the EKG probes and handed them to her and said Thank-You....When i arrived at the hospital to pick them up Tommy was walking. This has been the fastest recovery for him.His right ear now is still bleeding,I hope this stops real soon.
Kaitlyn went to clinic today also. Her labs look good except for her hemogloblin.It has dropped down to 8.7 from 10.4 in a day. We return to clinic tommorrow to check on that.Her appetite is back full force and her energy level has returned...It is so nice to see her all over the place.She blows her lips together and it is so cute and funny to hear.I also forgot to mention her blood pressure has been return to normal and she is only taken one med 1x a day for that.It was funny today. We walked over to clinic today around 9:15 and when we left at 11 there was 3 inches of snow.This snow caught everyone by a surprize.I still pushed her stroller thru it. Tom was back here getting evrything ready for Tommy. Also today they drew labs for her enzyme level,maybe Friday we should know what her level is now.Until then, Susan
Sunday, March 7, 2004 2:43 PM CST
Day 107
WBC 8.4
Hemoglobin 10.3
Platelets 286
Kaitlyn went to clinic on Friday and recevied a 4 hour infusion of other peoples antiboties.This is to boost her immune system. Overall this past week has been very busy for her. She continues to take oral meds all day and 3X a day we give her an antibotic thru her line. Along with that we had to give her TPN with lipids for nutrients this runs for 14 hours..Their was something to do every hour this week. She is no longer on TPN, her appetite came back. We are happy about that...Our 100th day appt. was Wednesday and really it was like just any other appt. We did receive some good news about her donor cells. We are at
the highest so far: M 83.1 N 81.8....Our goal is to be 100 ..Alot of different meds are getting us their. What will happen now is we will slowly wean her from some meds and watch her RFLP's (donor cells) and the goal is for them to stay stable or rise. I asked Dr. Orchard about home and he said not now but maybe the end of April. So we know now that Kaitlyn's 1st b-day will be celebrated here.We will be leaving right when the weather warms up...
Tommy has surgery tommorrow. He has to be there at 12:15 and surgery at 2:15. Tom will be taking him. I wish all of us could go but Kaitlyn can't be around people..If all goes well he will be home by 6pm...He is somewhat hard to intubate so I hope and pray everything go fine...What is going to be hard is not feeding him in the morning...Kirstn is doing great in school. Her along with 2 other girls have been doing some babysitting here at the house. Thanks for checking in on us...I have added new links below...The kids have their own virtual quilt online....Thanks Smile Quilts..... Susan
Monday, March 1, 2004 12:16 AM CST
New Picture's added 3-2-04
DAY 100
WBC 6.5
Hemoglobin 10.5
Platelets 234
Well we made it to that magical day of 100....Rest assure it is nice but we really had high hopes of coming home shortly afterwards.Kaitlyn is doing okay. She is not eating much and her energy level has dropped. It could be several things, coming off steroids, the drug MMF, her bacteria in her blood who knows. Today we went to clinic and I told them about her eating and we will start her back on TPN (IV food). She has'nt needed that since late December.All her labs look good...We will have our Day 100 clinic visit this Wednesday. Maybe we will have her lastest RFLP's (donor test) back by then. The story aired in Jacksonville last Friday and I have a link for it.
www.firstcoastnews.com/news/local/news-article.aspx?storyid=15439
Just click on video to watch..
Tommy's surgery for his ears is scheduled for March 8th now.Kirstin and I went to see a played this weekend called "Lilly's Purple Plastic Purse".It was nice to get out and kinda have a good time.The weather has been warm and today it is raining and then turn into snow later.Kaitlyn and I have been walking to clinic..We still have no clue of our homecoming but I kinda have a feeling it may be the later part of April.I just know we have to wait till she is 100n good health to come home.Kaitlyn's b-day is April 9th (Good Friday)..I wanted to be home for that but we know right now the best care for her is here.Thanks for checking in on us and we love reading the guestbook entries it lifts our spirits.....
Susan
Friday, February 27, 2004 9:21 AM CST
New picture's added 2-27-04
Well we finally got out of the hospital...we got back to the RMcDH about 4:00pm yesterday (YEAH!!!) Kaitlyn has to be on a antibiotic for 14 day's (Zyvox) to get the bacteria out of her blood. Her blood pressure has been a little high since she went into the hospital...they had us give her blood pressure med. 2 time's a day, Susan is at clinic right now and we are going to see about going to 3 time's because we could tell it was up this morning when she woke up. Kaitlyn's blood pressure has alway's been great so hopefully Susan will get some anwser's of why it is running high today at clinic. Kaitlyn has really been herself these last week, the roto virus has really taken a toll on her little body, she still's has diereha and just don't have much energy, she sleep's alot right now (which she need's) we just hope's her blood pressure get's back to normal because this could be another reason why she is so tired....We had to cancel Tommy's surgery to put new tube's in his ear's this morning, we think he has the roto viru's too...he has been running a fever and got sick wed. night, but seem's to feeling alright today..Kirstin didn't get to go sleding, the weather up has been in the high 30's low 40's this whole week and has melted most of the snow, so they canceled it till a differnt time...the story they did on us will air on channel 12 tonight back in Jax at 11pm, it was suppose to be on last week but got moved to this week...well that's all for now we will update soon.....Take care
Tom
Tuesday, February 24, 2004 1:51 PM CST
Day +94
WBC 3.9
Kaitlyn is still in the hospital.Last night I found out she has the roto virus. So we stopped all antibotics because the roto virus just needs to run it course..Her activity is bascially sleeping. Today the resident came in to tell me that the antibotics are going to start again because one of her blood cultures came back postive. The bacteria as of now has not been identified , maybe tommorrow we will know.She continues to drink her formula and some peditalyte..She has not eaten any baby food for about 4 days now...She has lost a pound..Not too much concern yet as far as her weight.I can see her beautiful blue eyes now...Where before she was so puffy you could'nt see her eyes...We really did'nt expect this so as soon as she gets out we will celebrate with Tommy...Next Monday is Day+100 for her so we can have 2 parties...Tonight here at the RMH is Mardi Gras...We need Kaitlyn to have her blood cultures come back negative for about 2 days and we are out of there..Last night for me was aweful.It's too long to talk about and whats the point..I expessed my concerns to the right people today and hopefully it won't happen again. As far as our story to air back home it is still scheduled to happen this Friday the 27th at 11pm on channel 12. I will get a weblink and post it after it runs for the people that don't live in Jacksonville..Kirstin may go tubbing this Thursday if all the snow does'nt melt...Its been warm here..We are expecting a snow storm this weekend...Thanks for checking in and we love reading the guestbook...To Tommy: Happy Birhtday we love you!!!!
Susan
Monday, February 23, 2004 10:09 AM CST
Kaitlyn is still in the hospital. Yesterday she spiked another fever so we just have to wait and see what is growing..So far all the test they have ran have come back negative..This morning she is still running a low grade fever..Yesterday they started a new antibotic and since then she has poop all the time and acts as if her tummy hurts so last night Tom asked for some pain meds..She sleep okay, not too much sleep for Tom. When you are in the hospital you really get no sleep because something is always beeping or they are checking vitals.Today I took Tommy for his physical..He is still scheduled for surgery this Friday...He will turn 7 tommorrow!!!! When Kaitlyn gets out of the hospital we will celebrate his B-day. I have decorated our room with banners for him..I also added new photos so check them out..If or when we have any answers on Kaitlyn I will let you know..
Susan
Saturday, February 21, 2004 2:24 PM CST
Day +91
WBC 4.1
As you can see Kaitlyn's WBC has taken a dive..We have been told that if she has a virus it could do that.All her blood cultures are coming back negative.She had a fever yesterday and also has vomited some.I question her steroid does Thursday because I have been giving her a different amount. The nurse told me its right it is just a different concentration. Okay I asked and said it was okay.Come to find out yesterday I was right.They gave her .08ml and she has been getting 2.5ml...That may be the reason she vomited and has'nt wanted to eat. You can't do that with steroids. I know humans make mistakes but it makes me mad that this happened..Also a new med was started a week ago..The side affects are loss of appetite,vomiting,pain in muscles....She is having all of these..We asked if something could be done and right now she has to take it in order to save this transplant.The roller coaster ride never ends...If she has no fever by morning she is getting discharged...Yeah!!! We want to celebrate Tommy's b-day together so maybe this will happen..Tommy's ear is still bleeding some. I hope with surgery Friday this will stop..
As for the news back home in Jax.they called me yesterday at 4pm and said they had to move it to Friday 27th..So watch next Friday...The weather has been nice the past few days...Getting into the 40's during the days and staying around 25 at night...You kinda want to put shorts on but not yet...We can't wait to get home and go to the beach..I miss the smell of the ocean..I hope this is a little setback for Kaitlyn we need a break from all this medical stuff..We have 2 kids that depend on doctors and to be honest it not easy...Cherish each day with your kids and don't wait till tommorrow, noone is promised that day...
Susan
Thursday, February 19, 2004 1:54 PM CST
Fri..2:15p.m. We just found out that the news story won't be shown tonight that it will be aired next Friday. If anything change's we will let you know...
We woke up today knowing Kailtyn would be admitted to the hospital..At 7:15am I took her temp and it was 100.7..Any fever greater that 100.5 is a pass to the hospital..We went to clinic and they started her on some antibotics and took some blood cultures to see what is up. Around 11:30 I walked over with chart in hand and Kaitlyn is back in the hospital.She has a stuffy nose but her chest sounds great. They are going to do several things with her, chest xray,sinus swab, and more blood cultures...Here it goes, when you think things are going smoothly then bam ....I will update if and when we know something...My heart is also very sad today. Again a family we knew lost their 11 month old yesterday. 2 beautiful children, (Tom and Cade) have died within 24 hrs. Cade was 3 weeks older than Kailtyn. His webpage is www.caringbridge.org/nc/cadesmith....
Also tommorrow back home in Jax. Channel 12 will air something at 11pm on us....I need to pack some things and get back over......Susan
Wednesday, February 18, 2004 10:19 AM CST
Day + 88
This Friday Feb 20th Channel 12 at 11pm the story will air!!!!
Actually I can say yesterday it was warm outside...Today it is going to be warmer maybe we can hit 40 degrees...Kaitlyn goes to clinic tommorrow..Tommy is scheduled for his surgery one week from Friday...They had it scheduled for March 17th and I told them gosh that is pretty far away for a little boy whos ears bleed. I also told her the situation we are in and ask her to see if we can do it sooner...She called back and it is next week...Tommy also has his 7th BIRTHDAY next Tuesday...I wish we were home with family and friends but we will make the best of it...I have some sad news...We met a family here back in Nov., their son, Tom died yesterday.You can visit their web page www.caringbridge.org/ri/tom
I will update tommorrow after clinic...Thanks to everyone who checks in on us....Susan
Friday, February 13, 2004 10:47 AM CST
Day + 83
WBC 14.2
Hemoglobin 10.4
Platelets 366
New Photos...
Yesterday Kaitlyn saw Dr.Orchard. All her labs are great..She weights now 26pds 3oz..We found out her latest engraftment #'s. Here they are:
M 79.6
N 68.6
These are up from 1/26/04 M 69.3 N 53.4
They also did a more indepth count of the M # to find out about her Tcells and they came back 100% donor...This is great.Our plan is to continue on the prednisone (steroids) along with a new drug called MMF. She now is on a prednisone taper, which is good. Maybe she could lose some weight. I know all this weight is so hard on her little body. Our goal is to either get her M and N #'s up to 100% donor with the help of this new drug MMF. The down side to all of this is her immune system will be even more surpressed.It does'nt look like we will be going home by our 100th day either. All her meds are so expenses, on a average month we pay out of pocket about $300. She will reamin on these meds close to September of this year...Everyone comments on how happy of a baby she is...She is always content and smiles all the time.Overall we are happy her #'s are going up...Tonight is Parents Night Out here at the RMCH...Kirstin is going to stay in the room with Tommy and Kaitlyn and Tom and I are going to have dinner cooked and served to us...I know the main course is Filet Miegon....The weather is still cold and we have about a foot of snow still on the ground...We have tried to make a snowman but it is still too cold and we need it to warm up so the snow can compact together.I still have'nt heard yet when Tommy will have surgery to replace his tubes in his ears.Thanks to everyone who still checks on us.
Happy Valentines Day Susan
Monday, February 9, 2004 11:15 AM CST
THURSDAY NEW PHOTOS....2-12-04
Day 79
We have no clinic till Thursday.Last Thursday we saw Dr. Orchard and Kaitlyn continues to do well except for her engraftment. She is up to 25pds 7 oz. If she can stay at 70 onor cells that would be great but we have no way to tell right now if that will happen. Only time will tell. Also we recevied her 60 day enzyme level and it is now 16.7. It was 15.7 back in December. The drs. were okay that it went up instead of down, but it should have doubled. We have no clue why her donor cells are the way they are and why her enzyme is low. I ask questions and never get a straight forward answer. I always ask too could the lab make a mistake with these test. I know first hand nothing is 100 ight. One thing we are thankful for is she is alive and doing so well..Tommy has been having issues with his ears, so I took him in this past Friday and Yes his tubes are no longer there. He is scheduled for surgery sometime this month. They will call me with a date. I told them not on Feb.24 because that is his 7th birthday..I can't beleive he will be 7!!! This past Saturday Tom and Kirstin went to the NHL practice game. Hockey is really big here. Just like Golf is in Florida.They had a really nice time. On Sunday Kirstin went to another Timberwolves basketball game with another family here. This Friday the RMCH is having a parents night out. Red Lobster is coming in to cook for the parents. Volunteers are helping out with the kids. Hopefully we can go. I signed up for someone to sit with Kaitlyn in our room. If not its okay. Tom and I do miss time together alone...The issue about going home has not even come up. Your goal is Day 100 but with her engraftment issues and the meds Kaitlyn is on I don't think it will happen soon.I want all the issues finished here because I have had no luck with the drs. back home in Jackonville.When we came home with Tommy it was like they did'nt care about his health. I am going to search for a Dr. that wants to learn about Hurlers and goes out and beyond their way just like they do here in Minnesota. I still have no date for the news show. I think Kare 11 here is doing their own story and Channel 12 back home in the next week or so..I will let everyone know so you can watch it and someone tape it for us. We have put new pictures too...Until next time. Love, Susan
Tuesday, February 3, 2004 9:23 AM CST
Saturday New Photos.....
Day 73
WBC 12.1
Hemoglobin 10.1
Platelets 309
Yesterday Kaitlyn went to clinic to have her labs drawn.Her counts still remain very stable..Yesterday we had a photo journalist with us when we went to clinic..When I have a day for the news story I will let everyone know...Kaitlyn is doing good.. Tommy goes to speech therpy today. Our friend, John is here and has made us laught so much...Gosh we need it...Kaitlyn's engraftment makes us so nervous..We did receive last weeks results and here they are again all of them:
(12/15) M 73.7 R> N 49.4 R>
(12/29) M 77.8 R> N 60.8 R>
(1/20) M 71.2 R> N 52.6 R>
(1/26) M 69.3 R> N 53.4 R>
In my last entries I left out the bottom, the "N" stands for Neutrophils.This has something to do with the T cells. Since Kaitlyn has never been 100 ngrafted we are having her blood tested each week to see where it stands. Last Monday they also drew for enzyme level and as of now we are still waiting for those results.I have mix feelings with all of this..In order for this transplant to be successful we cannot have her engraftment drop any but as you can see it goes up and down and we ask questions to why this is happening and get no answers.. The roller coaster ride NEVER ends...She continues to be on a high does of steroids and we have no idea when this will start to taper.In order for us to even think about going home her engraftment needs to stablize and be off steroids. Knowing how a steroid taper goes it could take months to get off of this. What I think is when her steroids were tapering off this first time her engraftment started to go down and now with being back on steroids her engraftment will go back up..So what will happen if we start to taper again will her own cells know this and start coming back again...All of this could make a person go crazy but we try to be postive the best we can and just be happy that our children are with us today...Our future is so , well let me just say this, no one is promised tommorrow so be thankful we have today....
I do have to say we have ALOT of snow...For 2 days that is all it did was snow...After it stopped I think they said we got 14 inches...It is very cold again...When it snows it warms up to about 15 above. When it stops snowing it drops below 0 and then some...Thanks for everyone checking in on us....We would love to hear from anyone also...Our phone is 612-379-2896...It has always been posted on this webpage...Going thru something like this a 2nd time you truly find the meaning of TRUE friendship...Thanks to everyone who has called us throughtout this time you all know who you are...It means alot to us....Until next time...Love, Susan
Friday, January 30, 2004 9:41 PM CST
Well surgery went well Kaitlyn now has a port in her chest area instead of a pic line in her arm...she does have a big bruise where they put in the port...but beside's that she is doing good...we have a good friend (John O'Brien)flying in from Jacksonville tomorrow to visit and to watch the Superbowl with Tom...he said he couldn't let his best bud watch it alone...we look foward to seeing him he will be staying till Thurs...John really help's us out with Tommy's Golf Tournment which will be in August this year at the "World Golf Village" in Flordia, we are excited because this is really one of the top course's in Flordia...this will be Tommy's 6th tournment this year(how time flies) which Susan's brother Steve started(Thank's Steve)...it just seem's to get bigger every year...this year we are going to have 2 tee time's 1 in the morning and 1 in the afternoon, we really appreciate everybody that help's out!!!Thank's for checking on us and Please sign the "guestbook"
Tom
Monday, January 26, 2004 3:59 PM CST
Friday Update 1-30-04
Kaitlyn is scheduled to have surgery today at 11am Minneapolis time. Please keep her in your prayers today. This surgery should be outpatient as long as no problems happen...We should be back at the RMCH house sometime later and I will update when we do.Also we are doing a story with the news sometime next week. Kare 11 here is shooting the story and also Channel 12 back home is going to get some footage and air the story..When I know what day it will air I will post it...Everyone is doing fine right now...Its -26 right now with a wind chill of -45...Cold is beyond us.Take care and will update later....Love Susan
Day 65
WBC 8.2
Hemoglobin 10.9
Platelets 266
Its been awhile since I have updated..Kaitlyn went to clinic today and her labs are great..Everything is within normal range...From a transplant view this is awesome!!! Now only if we can make her donor cells grow more and not have her cells come back..Her engraftment is this:
12-15-03 73.7 R>12-29-03 77.8 R>1-12-04 71.2 R>
I have no clue to why this is happening and have no answers from her doctors to why..One thing that they have done was put her back on her steroids. She was one week away from being off from her steroid taper and now she is back on them...A big dose for her...With this they hope to surpress her OWN marrow and let the donor cells grow and take over..This transplant is not a failure but we what her to be 100 ngrafted...I should know this Friday her enzyme level and more info about engraftment...Usually they only draw for these #'s on Day 21, Day 60 and Day 100 but with Kaitlyn we are having them check weekly...Kaitlyn will be having surgery this Friday to take her pic line out of her arm and have a port-a-cath placed in her chest under her skin. This is great...No more dressing changes and the bath has no limits...Her eyebrows now connect in the middle and her hair is starting to come back in...Dark at that...She still has some blonde mixed with the dark black...Rolls and rolls of chubby legs too...Oh I almost forgot, she started to crawl last Wednedsay...She is into everything and moves really fast...Tom and Kirstin went to a basketball game on Sunday...Tommy and Tom are in the gym right now boucing in the moonwalk...Its still cold and gosh we have so much snow here..Thanks for checking in and pray really hard that her donor cells start to rise...Love, Susan
Monday, January 19, 2004 6:26 PM CST
Day+58
Hi this is big sister Kirstin. Kaitlyn is doing great. Today Tommy jumped on a moonwalk he loved it so much he jumps with the other kids he does body slams on it. Kaitlyn has been jumping hard in her jumper exerciser. Yesterday I spent the night with Taylor McClung it was fun.Tommorrow Kaitlyn goes to clinic. Kaitlyn is so chubby we call her chunky monkey. Kaitlyn still has her blonde hair. Kaitlyn has so much medicine. We miss Flordia so much. Right now it is so cold. Ok i think i need to go.
Love,
Big sissy
(Kirstin)
Thursday, January 15, 2004 9:48 AM CST
New picture's added 1-15-04
Day 54
WBC 5.7
Hemoglobin 11.8
Platelets 189 wow...
We just got back from seeing Dr.Orchard...He said Kaitlyn is doing great..Her labs are great..We return to clinic on Monday and Thursday next week then maybe once a week from then on. She continues to amaze us each day..Her Granny taught her to wave bye-bye...She starts to wave bye-bye then starts to patty-cake,its so cute....Here is a list of the medications Kaitlyn's been on since being discharged back in December:
Penicillin 2x a day
Gengraft 2x a day will stay on this one thru Sept/04 (makes her hairy...anti-rejection med)
Prednizone 2x a day hopefully stop this Feb 1st...
Norvasc 1x a day (blood pressure)
Nystatin 4x a day (mouth-care)
Diflucan 1x a day
Acyclovir 5x a day
Bactrium 2x a day (only on Mon.and Tues)
Then each day I have to flush and heplock her pic line..Tommy was on all these meds plus some more...He continues to take meds for his heart...Yesterday was Tommy's 5 yr. anniversary from his BMT.Never thought we would be here but he is alive and that is all that matters.Last night we took Tommy to the basement where the basketball court is and they had a big air thing that the kids jump in...He had so much fun and was very mad when we had to leave. My Mom leaves today...She gets to go home to the sunshine state...Maybe in 2 months we will be there too..The weather here is the same: COLD!!! This past Monday Tom and I went to another Hockey game and we had seats 3 rows from the glass(plastic glass)...It was very exciting seeing them up close...Those guys are big...I enjoy the hockey games more than the basketball games...Thanks to everyone checking in on us and sign our guestbook.... Love Susan
Monday, January 12, 2004 12:42 AM CST
Day +51
WBC 5.7
Hemoglobin 12.0
Platelets 152
New photos!!!
Half way there to Day +100!!!! Kaitlyn went to clinic today and her counts are great...Today is the last day for her antibotic thru her pic line...Our next clinic visit is Thursday when we see her primary, Dr. Orchard to discuss her surgery..She will have her pic line taken out and replaced with a port...Last week we found out about her RFLP's (donor cells). On 12-15-03 she was 73.7% donor cells. On 12-29-03 she was 77.8% donor cells. Today they drew more blood to check for RFLP's. Should know something by the end of the week....I am happy with these #'s but I would love for that # to be 100% donor cells...Her enzyme level will be checked again on January 22...Kaitlyn continues to amaze us each day...She turned 9 months old last Friday...Maybe we will be home by her 1st b-day.(April 9)...Everyone is doing fine. My mom leaves this Thursday to go home...She has been such a big help and we will sure miss her...Thanks for checking in and sign our guestbook...We love reading the entries....Love, Susan
PS.Congradulations to Jessica and James on their new daughter, Kaitlynne Marie....
Wednesday, January 7, 2004 10:38 PM CST
Great news Kaitlyn was discharged from the hospital today. She came home on one oral antibotic and one antibotic thru her new pic line. Her line is so tiny. I don't have a date for her next surgery..We see her primary doctor tommorrow and maybe he can give us a time and date. She is doing great...She did need a blood tranfusion before we left..I think with all the blood they have taken from her and the surgery made her hemoglobin dip down...Her WBC today was 10.2 and platelets were 156...Tommorrow we also have a visit with the eye docs..This is routine after transplant.Kirstin and Tommy are doing good too..Kaitlyn will be 9 months old this Friday..She is growing by leaps and bounds..Her eyebrows are so cute...Thanks for checking...Love, Susan
Monday, January 5, 2004 7:17 PM CST
New photos....
When Kaitlyn and I went to bed last night we still did'nt have a time for surgery...During the night she was a little fussy because she could'nt have a bottle pass 4am...When I woke up a 7:45am the nurse said they will be here at 8am to take us down...Needless to say I changed my clothes and brushed my teeth and we were down to the pre-op room...Surgery was planned for 9am...Tom and I waited and by 11:30 am we were with Kaitlyn again...Surgery went great...She has a pic line in her left arm right below her elbow...After staying in recovery for 45 minutes we went back to her room...A couple different people gave us different news about what is next...From what we know now they did some blood cultures around 3pm and we need those cultures to come back negative.Should know something tommorrow..If it comes back negative Kaitlyn will be discharged later this week with the pic line in her arm and continue on antibotics for a week...The pic line is only going to be in up to 10 days then surgery again for a port...The port is placed under the skin in the middle of the chest...The port can stay there for up to a year...During recovery today she looked so peaceful sleeping...When her daddy and I started to talk to her, her heartbeat went sky high...She was really happy with us when she got her bottle...I am so proud of her...I also pray that all goes well and she is home again with us at the RMCH...Kirstin went back to school today...Tommy has therapy tommorrow with OT,PT and speech...I feel better now knowing surgery went smooth..On to some other news I thought it was cold here last week but I don't think it made it above 0 today...Tonight and tommorrow are going to get worse...Tommorrow with the wind chill it is going to be -30...They are calling for a warmer weekend highs in the 20's....Gosh we miss Florida...Thanks for checking in.
Also a friend of ours needs alot of prayers..Her name is Saralee..She is 19 yrs old and fighting for her life...Her webpage is www.caringbridge.org/mn/saralee...
Love, Susan
Saturday, January 3, 2004 5:01 PM CST
New picture's added 1-4-04
UPDATE AS OF SUNDAY 1-4-03
Kaitlyn is doing well except her 3rd blood culture has come back postive...What this means is that the bacteria they found may be stuck to her cental line inside her body.She is going into surgery on Monday to have her cental line taken out and it will be replaced with a PIC line in her arm...It feels as if we are reliving Tommy's BMT all over again..Tommy had this happen to him also...With the PIC line it can stay in the arm up to 2 weeks then she will have to go into surgery agin for a PORT to be placed in her chest..The PORT stays under the skin in the chest and each time she needs to be access she will have a needle placed inside the port...We are so heartbroken that all of this is happening...She contiunes to eat and smile at you all the time...Anytime she has surgery there is a higher risk of infection because she is immune surpressed or death because of their airway (Hurler kids)...We still have no results from her RFLP's(f donor
cells)..Sometimes, well all the time I wonder why this has happened..I still have no clue...(about the prenatual testing) One day your rejoicing because she has enzyme and the next day you are pissed off because it was'nt supposed to be like this...Yeah people say God does'nt give you more than you can handle but my heart is so broken...I try and look at the postive but right now I can't see it...Pray that surgery goes well and Kaitlyn will be free of this bacteria...Also there are alot of sick kids on 4A say a pray for their recovery....
Its been awhile since my last update and here is whats new...We had a wonderful time at our friends place up north...On New Years eve around 10:30pm I got a call from my mom telling me Kaitlyn was running a fever...Any fever above 1OO.5 is an admission to the hospital..Kaitlyn and Granny brought in the New Year at the hopital...They draw blood to see if anything comes back positive and it did...She has been on 3 antibotic to cover everything...She will be getting out this Sunday...The name of the bacteria that was found is called Enterobacter Cloacae..She will come home on an oral antibotic and one antibotic thru her central line...She continues to take all her meds great...(9 of them)...My newphew Colt just left today...He had a great time with us...Tommy and Kirstin are doing good...I do know that it has been really cold here today and I hear that it is going to get even colder...Supposed to snow tommorrow..I love the snow...We took all of our christmas decorations down and tried to put some toys away...Our 100th day is March 1st...Just in time for the weather to warm up a little...Thanks for checking in and sign the guestbook.....Love, Susan
Monday, December 29, 2003 2:34 PM CST
Day + 35
WBC 5.6
Hemoglobin 9.6
Platelets 154 within normal range..
Boy did we have a wonderful Christmas!!! Just having everyone here at the RMCH was enough for us...Santa was real nice to everyone and we are so thankful for all the gifts that we recevied...Kaitlyn is doing AWESOME!!! We had the weekend off of clinic and we took her today and her labs are great...She also had OT and PT therpy, which went nice..She is right on track!!!! Her labs on Friday were this: WBC 5.2 Hemoglobin 9.6 Platelets 124
She is making everything on her own..I asked about the test for engraftment (RFLP's) and was told one was never sent out so we have to wait another 2 weeks. I already know her body is producing the enzyme...We are off of clinic till Friday...My newphew flew in yesterday and he will be with us for a week...Tom, Kirstin, Tommy, Colt and myself are leaving on Tuesday to go to my friends house 2 hours north of here..We are excited about this trip...We always have fun and enjoy our time with them...My Mom will stay with Kaitlyn at the RMCH..They have 4 wheelers snow -mobiles, access to ice fishing...Time is flying by and before you know it we will be home in the sunshine state...I love the snow but it is really really cold here and we have 2 to 3 more months of cold....Tom has posted new pictures..Thanks for checking in and I want to wish everyone a Happy New Year..Love Susan
Sign the guestbook :)
Monday, December 22, 2003 1:26 PM CST
New photos added 12-23-03.....
Day 30
WBC 4.3
We had a nice weekend with Poppy (TC)...Mom was really surprized!!! He left on Sunday and got home ok...Saturday labs were great.
WBC 3.5
Hemoglobin 9.3
Platelets 82,000
She has to stay above 8.0 for hemoglobon and above 40,000 for platelets.If they drop below she will get a transfusion. Today labs for Monday were
WBC 4.3
Hemoglobin 9.2
Platelets 86,000
She is doing awesome...We have not had a transfusion now for over a week and no growth factor(to help the WBC go up) in a week also...This tells us and the doctors that her new marrow is growing and coming in real strong..I mentioned in my last update that we have enzyme...Kaitlyn was born without the enzyme called, alpha L-iduronidaise. They tested her blood on Day 21 to check for enzyme activity and it showed them she has 15.7 enzyme....Over time her enzyme level should go up...Thru this BMT we saved Kaitlyn's intelligence. The transplant does'nt help the bones so she will likely have the same surgeries as Tommy: Carpel Tunnel, Trigger Finger release, Knee and Hip surgery later in life...Kaitlyn is growing by leaps and bounds and she is such a passive baby..Everyone comments on how good she is..She has nevered tried to take her mask off nor she never cries...She loves to pull on her socks and take them off..Its really cute to see her do this...Tommy and Kirstin are doing good..Kirstin is on x-mas break till Jan/04..We have 70 more days to go till day 100....Thanks for checking in and I want to wish everyone a very Merry Christmas.... Love, Susan
Thursday, December 18, 2003 10:52 PM CST
Day 27 Friday
We have some great news to share...Kaitlyn has ENZYME...We will know engraftment studies in about 2 weeks...Kailtyn was born without this enzyme and now her body is producing it...We are so proud of her...
Day 26
W.B.C.2.6
Well T.C.(Poppy) made it in and boy was Debbie(Grannny) surprised...she hollered and screamed(which woke up Kaitlyn...LOL) she didn't know nothing about it neither did Kirstin and Tommy...I knew for about 3 week's...I think everyone here knew at the Ronald Mcdonald house...it was a big surprise...We took Kaitlyn to the clinic this morning like every morning but this morning we seen her primary Doc.(every Thursday) we have Dr. Orchard as her Doc. and Tommy has Dr. Peter's they both are great...we heard the BMT doctor's was all wanting Kaitlyn...she is doing great Dr. Orchard said that he considers her a boring patient( which is great for us...no news is good news) he was happy with her labs and even stopped the lasix(stuff that makes you pee)she is eating good and alway's in a good mood...her white blood has been going down because of the growth factor they took her off of ...but it went up .1 today so hopefully it will keep going up from now...Susan and I went to Applebee's for dinner( for our annivesary the big 10 Years )before we went to pick up poppy from the airport...Kaitlyn got a new highchair today she really has a good time in it and even fell asleep in it...thanks for the cards and thanks to "MERITA" for sending us some fresh bread and some goodies( the bread up here just ain't the same)thanks also to the Merita co-worker's for raising over $500.00 for us it really helps alot(thanks O'B we really want to thank you for everything you have done for us.)their are new picture's so check them out and again thanks to everyone for all the praying and support it really keep's us going everyday why we are here....Thanks Tom (Daddy)
Tuesday, December 16, 2003 3:55 PM CST
Day + 24
WBC 3.5
I finally have some time to do an update...Kaitlyn was discharged last Thursday. We got out of there around 6pm..The days following have been busy. She is going to clinic daily for labs and had platelets on Sunday...Tommorrow she is going to get platelets too...During her hospital stay she was getting platelets every day and now it is every 48 hours...All her labs have been great....We had to give her TPN (total protein nutrients) for the last 5 days and today we were told to stop it...YEAH!!!! Her food intake is awesome....One less thing to do at night....During an entire day she takes 8 different meds... Some of these meds are 2 to 5 times a day...It takes all morning and all night to gives these to her...She loves cheerios too...Kaitlyn is doing so well right now...
Thanks Trisha, Eva, and Larea for the care package...Thanks to Merita for the bread and goodies!!! Its means alot to our family....It means alot to when you sign the guestbook..You are so confined up here and when you read the entries it gives us support....Last night we got ice then it snowed...I don't enjoy the ice as much as the snow...A few times you catch yourself from busting your butt outside...Winter is here and it is so different from Florida...Its really pretty outside but you spend little time out there too....Tonight Tom and I are going to see the Minnesota Timberwolves vs.Houston Rockets...I have never been to a basketball game like this.. Our anniversary is this Thursday (Dec.18th), it will be 10 years...I remember 5 years ago Tom left Florida on Dec. 18th to drive to Minnesota for Tommy's BMT and we promised each other on our 10 yr. that we would renew our vows but I guess it will have to wait till our 15 yr.one...Tom has added new photos so check them out and remember tosign the guestbook...Love, Susan
Thursday, December 11, 2003 11:56 AM CST
We have awesome news...Kaitlyn is being discharged TODAY (THURSDAY).
I am so excited !!! We are just waiting now for all her meds to come to the room so we can take her back to the RMCH..We are so proud of her.....
Day 19
WBC 3.0
We have great news!!!! Kaitlyn is scheduled to be DISCHARGED on Friday...She has been taking all her meds by mouth and continues to eat...I am going to a class this afternoon to learn how to care for her central line...I remember alot of it from Tommy but need a refresher course...She will be going to clinic daily for labs and most likely platelets...I am so thankful right now that she is doing so good...She is getting so big from the steroids..Thanks Kerry for the clothes...When Kaitlyn was addmitted to the hospital she wore between 9 to 12 months now she is in 18 to 24 months....I am so proud of her :)...
Tommy got his haircut and did well for us...Kirstin is doing good in school and can't wait till Christmas..
Maybe now we can get a family picture to send out with my Christmas cards...I have'nt let Kirstin or Tommy at the hopital since Nov. 22 because I wanted to make sure Kaitlyn got the best chance thur this BMT....They are really gonna see a BIG change when they see her....We still are not out of the woods by far...We will take each day at a time and pray we have a smooth transition...Our 100 day is somewhere in March...My heart tells me we may be home by Kaitlyn's 1st b-day in April....Sign the guestbook....Thanks Grace for the soap!!!!! We miss you guys!!!! We really got alot of snow this week....And it is really really cold today...I think the high is gonna be 14....The low tonight is gonna be below 0......Good thoughts and prayers are carring us thru this THANKS!!!!!
Love, Susan
Monday, December 8, 2003 11:41 AM CST
Day 16
WBC 1.6
The weekend was nothing but short of surprizes for us...On Saturday when the doctors made there rounds we heard the word DISCHARGE...I was and still am in shock...Kaitlyn is doing awesome...We stopped her TPN (IV food) for 12 hours to help her want to eat by mouth and she did and contiunes too...Her WBC keeps on rising and that is great...In order for her to get out of the hospital Kaitlyn needs to have no fevers, which I can't even remember the last one she had maybe when she was getting ATG 3 weeks ago...No rashes, eating by mouth, taking oral meds...I think this discharge will happen this week sometime...I am so proud of her...She is getting the budda look...Her peach fuzz hair is still there...Grow cells grow...On Day 21 they will check for engraftment..This will tell us if she has donor cells...The results could take a week or so.My Kaitlyn is nothing short of an angel!!!!!
Tommy is doing well...Tom and I are trying to cut his hair...He refuses us to do this but somehow we will.. His hair looks like a pillow head all the time....Kirstin and Tom had a great Sunday...They went to the Vikings vs. Seahawks football game...The Vikings won...So did our Jacksonville Jaguars!!!!! Actually the weather today is nice but I have heard a cold front is coming in tonight...The weather here is nothing like back home...You get used to it but I miss seeing the sun everyday...The Ronald McDonald House looks awesome...It is decorated from head to toe in Christmas decoratings..Continue to pray for my family we need all the support for us to deal with this...We love the guestbook entries too...Love Susan
Saturday, December 6, 2003 10:58 AM CST
Day + 14
WBC 1.4
Kaitlyn continues to amaze us everyday...Her white blood count (WBC) is going in the right direction...Grow cells grow!!! She continues to get platelets almost everyday..This could happen for the next 6 months or so..As of today she still has peach fuzz hair..Nurses and aids tell us that she may not lose all her hair...It is still blonde..She continues to get IV nutrients..Somedays she may drink some but its okay for her not to want to eat or drink...If I recall it took Tommy some 30 to 40 days to eat again...I am so proud of her!!!
Today my mom and Kirstin took off with the RMCH van to go to the Mall of America...I have been in the past and let me tell you it is HUGH....I am so happy that they can get out and do things....Today the weather is nice..High about 35...Thats warm to me :)!!!! Yesterday Tom helped our neighbor to the SSI office and I watched her kids for her.Tommy had fun with his friends and her kids were angels...They are from Colorodo...I just saw Ronald McDonald himself in the hallway here so Kaitlyn may have a visit from him today...
Christmas is approching and I want to say if you help out during the season the Ronald McDonald House is an awesome place to help...For the folks in Jacksonville it is right next to Nemours Children Clinic by Baptist Hosptial...Pick up a few extra toys and take them there...Even parents need things too...Just thought I would mention this...
Thanks for checking on us and we love to read the guestbook..It is sometime our highlight of the day...All the prayers and good karma ya'll are sending are sure reaching us...Remember to hug your kids tight and let you know you love them.....Love, Susan
Thursday, December 4, 2003 10:00 PM CST
Day + 12
WBC .06
Kaitlyn is doing well...Today she drank some formula for the first time in 3 weeks and also ate some banana's for my mom...She is completely off pain meds..No withdrawls from that either..Her blood pressure has been good too..It started to snow tonight..I love it when it snows..Its really pretty..I am just glad that I don't have to travel in it..Kirstin went x-mas shopping tonight..Tom and I watched Survivor...Kaitlyn could be in the hopital over Christmas..We have hung lights in her windows you can see them from the road..She is the happiest baby I know..Her little chipmuck cheecks are so cute...Always smiling!!! Last night my Mom and Kirstin and Tommy and me put up our Christmas tree and decorated our room here...Its looks so pretty...It would be a blessing if Kaitlyn makes it out before x-mas but I won't be upset if she does'nt...Next week I have a friend coming in to see us and we are going x-mas shopping...She lives about 2 hours north of here...Its nice to get out and do normal things if not your head will explode...Thanks for checking in on us and sign the guestbook.....Love, Susan
Tuesday, December 2, 2003 7:43 PM CST
Day 10
WBC 0.2
New pics 12-02-03
Kaitlyn is having a great day...She always has a smile for everyone...Her white blood count (WBC) is on tract with her transplant..She LOVES bathtime...I put the tub in the crib with alot of towels under it because all she does is splash...She drank 2oz of water for me today...Other than that she has'nt had anything by mouth in about 2 1/2 weeks now..This is very common during transplant..Kailtyn also needs platelet almost every morning...She had red cells today too.I came in the room today not seeing her in 24 hours and she looked so chunky to me...All the meds and fluids she gets IV is making her chunky...Thanks Kathy for the ornaments they were really pretty!!!! Michele thanks for the care package...I have the candy bars here with me tonight....Tom came up tonight with dinner from the RMCH...We were able to have dinner together...Kirstin is doing well in school...A total of 3 kids go...Alot of one on one....Tommy is doing well also...When we left Florida we were potty training him and things went crazy for a few weeks here and now he goes all the time on the potty...We got him some spongebob big boy underware.....All the snow is about gone.Its still COLD!!! Thanks for checking in on us....Sign the guestbook, we enjoy reading them....Love, Susan
Saturday, November 29, 2003 7:49 PM CST
Day 7 New pictures added
11-30-03
Its been a week now that her new cells have been in Kaitlyn's body.. They started to check her white blood count today (WBC for short). It is 0.1 thats okay too. From here on out we need that # to rise. We still have several weeks to know if they are donor cells..Kaitlyn blood pressure has been fine also..No medicine to bring it down...She still has hair also...She is playing with some new toys and lovin it right now...From a lying down position she can sit straight up...Also you hold her fingers and ask her "how big is the baby" and she takes your fingers above her head...Granny taught her that within a day..Tommy is doing great...If he would wear big boy underwear it would be alot easier...He uses the potty but refuses to wear underwear...Kirstin starts back school on Monday...We should have our x-mas tree up real soon...We need ornaments so it will have lights until we get back out to the store...Granny and Kirstin are excited about tommorrow night, Kenny Rogers Christmas Live...Tom drove us last night to where it is and I should'nt get lost..About 10 minutes down the road...I hope everyone had a wonderful Thanksgiving...Days all run into one another here...Time is not important..I finally went grocery shopping today...We would go but just to get milk or bread...Tonight for dinner we are having grilled steaks and my awesome potatoes...Yummy!!!! Tom should be here soon with my dinner...We have'nt cooked in over a month so I am so thankful we can tonight...Please continue to pray for Max's family...His funneral is Tuesday...They live in Chicago...Take care and remember to LIVE TODAY!!!!
Love, Susan
PS Sign the guestbook!!!
Friday, November 28, 2003 11:04 AM CST
Well we are on day +6 so far she has been doing great. Her blood pressure was a little high yesterday evening so they gave her some meds. to bring it down(she only needed a 1/2 of dose). Her hair continues to fall out so I think we are going to go ahead and put the clippers to it. I sure hate to see her blonde hair fall out- we hope it comes back blonde. Her temps. have been staying down for the last couple of day's. Susan got up bright and early this morning to go shopping...she said it wasn't nothing like it is back home. Back home the day after Thanksgiving it is a MAD HOUSE out shopping.I just want to thank everyone that has been signing the guestbook it really means alot to us as we go thru this with Kaitlyn and if you haven't been signing it please do we need all the support we can get. We look foward to reading the guestbook everyday and not to many people have been signing it. Again please take the time to sign it so we will know that there are people reading the journal...
Thank's
Tom
Wednesday, November 26, 2003 5:08 PM CST
Day + 4
Kaitlyn right now is sleeping with her baby doll...She looks just like an angel!!! No fever yesterday or today. Her butt is improving slowly..It was like she had a layer of her skin burnt..New skin is healing it..She gets upset during diaper changes..I don't blame her one bit.Last night Tom and me and Tommy and Kirstin had a nice dinner at Outback..Yummy!! I sure do miss cooking. If anyone knows us we grill out everyday..I am so thankful that my mom is here. She is a hugh help..It feels as if you can sit and breathe a little easier knowing that you don't have to be at 5 different places all the time..Tommy and Kirstin are loving it too..Mom stayed last night at the hospital and had a good night...Even with Kaitlyn waking up at 4am wanting to play...Thanks a million Poppy!!!!As I write this my entire family is in Virginia or driving to get there to be at Grandma's and Granddaddy's..I will sure be thinking about ya'll...Enjoy you time with everyone...Also today I got two tickets for Mom and Kirstin to go and see Kenny Rogers Christmas Live here in Minneapolis...The show is this Sunday...
Our friend whom we never met but had the honor to meet his mom and dad and sister and some extened family members earned his angel wings today. Mighty Max know that you touched my heart and soul....
I sure will be thinking tommorrow morning all the people getting the food ready to sit down at dinner time with their family and celebrating Thanksgiving..I love watching the parades too!!! Hug and kiss your love ones...Love Susan
Monday, November 24, 2003 11:40 PM CST
Day + 2
Kaitlyn is doing good..No fevers today...She continues to be a super happy girl...We had to change her pain med from Morphine to Fentanyl..She keep on rubbing her nose...Until her butt clears up we will continue with the pain med..Her butt has improved some but it looks really painful..She still has hair..She is not interested yet with her bottles..So she is getting nutrients thru IV..It could take several weeks for her to want food. I have wonderful news to share...My mom is here...It has been really difficult at times for Tom and me..I am so Happy that she will be here to help out..I know she will be missed this year in Virginia for Thanksgiving but we needed someone here to help us...Tommy and Kirstin needed her too..Thanks a million Mom for dropping everything to be here...We love you!!!!We have so many reasons to be thankful this year..I am so proud of all my kids..We are truly blessed with 3 beautiful children...They may not be healthy all the time but they are here with us right now..Please say an extra prayer for our friend Max and his family. They are faced with the decision no parent should ever have too. They may stop life support...Light a candle for them as they need alot of strenght to get thru this..Tom posted new pictures so check them out....Miss everyone back home...Happy Thanksgiving to everyone and remember that no one is promised tommorrow so live today to the fullest...Love Susan and family.....
Sunday, November 23, 2003 0:58 AM CST
Day 0 Transplant Day Happy Birthday Kaitlyn!!!!!
Kaitlyn received her new cord blood around 5:19pm today..Kirstin and I we there and she did great. It only took about 25 minutes and it was over...Now we need her new cells to like her body and engraft with donor cells.We we not know for several weeks if she has her donor cells..She has been pretty uncomfortable the past couple of days. Her bottom is so RED and it hurts everytime we change her. We started a little morphine today and it seems to help. The hard days have arrived and things can get really tough before it gets better...She had her 1st blood tranfusion early today (SAT)...Blood tranfusions or getting plattlets are common with transplants. She has been having fevers too. For the next 3 weeks she will be pretty tired and crabby...But Mommy and Daddy are always there to make her smile and she does...She looks just like an angel...In about 3 to 4 days her hair may be gone..We have been taking lots of pictures and home video..Kaitlyn's baptism was sweet..She woke up from her nap and looked Father Leo in the eyes during the entire time.It was as if she knew what was going on...Now we need to pray for her new cells to grow...The weather here is beautiful. I love the snow..We should have alot by morning...Its late and I need to go to bed....Sign the guestbooks. We love reading it...Continue to pray for our friend Max..Also today was his 100 post transplant.Thanksgiving is coming and I never imagined being here. But I have to say it feels like home here...
Susan
Friday, November 21, 2003 6:50 PM CST
Day -1
Kaitlyn is all done with the ATG drug. (That one is the horse or rabbit antiboties) This drug helps with the T-cells...I think she got the rabbit one...She is sleeping now. Her 2nd birthday will be tommorrow!!!! I wish I could thank the mom who donated her baby's cord..Kaitlyn's cord is a 6/6 match...The best it can be...We have been told it might happen around 5 pm...Tommy and me found Walmart today...Gosh you have to drive 30 minutes for one...Traffic here is crazy too. You merge from the left lanes on the interstate and sometimes there is a stop light before you merge onto one and buses stop on the interstate to pick up people...Around the university people walk right out in front of you...Christmas break will be coming so hopefully it will not be busy for awhile....Kaitlyn is no longer wanting her formual...She continues to drink water, a very little bit...She now gets her nutrients via IV and it is called TPN...She is such an amazing little girl with a BIG HEART...Tom posted some new pictures...We have'nt figured out how to resize them but they are adorable...Tommy is adjusting better to the Ronald McDonald House...He is so routine about everything and with the busy life we have, he does good...Kirstin had a field trip today to McDonald's and then they saw the movie :The Cat In The Hat"....I want to go and see the movie "ELF"...It looks so darn funny...
I have been listening to the weather and it looks as if I am going to get my blizzard afterall....We are excited about the upcoming storm...I went to the store today to get Tommy's favorite food items...Since we will not dare drive in that weather...Sign the guestbook because it helps to know people care....Love, Susan
Wednesday, November 19, 2003 10:43 PM CST
Things went well today with all the new meds at first...Around 6:30pm after she woke up I noticed her little cheeks were real red...I called for her temp to be checked...It was 102.8...As I was giving her tylenol she threw up...A hour later her temp was 103.8...She has no fever now and she is sleeping...They also took a chest x-ray of her lungs...All of this is normal for a child to experience given the fact of these meds...She will get ATG till Friday so the fever can come back...Kaitlyn is so sweet...She keeps on smiling thru this whole process...I have some exciting news to share..Tommorrow Kaitlyn will be baptised...Even thought she will have no godparents I still want this for her...
Today Tommy and I found Michael's craft store and bought a 4 ft christmas tree...I always put my tree up right after Thanksgiving...This year will be no different...I need ornaments, so if anyone wants to send one or two that would be nice..Our address to the Ronald McDonald House is on this page at the bottom...Tommorrow at 6am Care 11 TV station will be at the house to cook breakfast and air some footage...Its Childrens Day and they are going to cook and mingle with the families there...Kirstin will be going...She may be on TV...Also Care 11 here wants to do a story about our family and the situation we are in...We will be in contact with them soon so they can shoot some footage...I think our transmission in our car is going out..I swear what else could go wrong for us...We need some good luck sent our way...Thanksgiving is in one week and I do know that I am so thankful for my entire family..Wish I could be in Virginia to celebrate with everyone..Also our friend Max is still very unstable..Keep their family in your thoughts over the next few days and pray for strenght for them..I wish I could sprinkle magic potion over him so he could get better...He has a sister, Grace and Kirstin loves to play with her..Only a few days left till the BIG day...Take care everyone....
Tuesday, November 18, 2003 10:28 PM CST
Day -4
Kailtyn has been on Cytoxan now for 2 full days...She has needed some Lasix (help her pee) also...With Cytoxan it can be really bad on the bladder so they want to make sure it does'nt sit around in there...I just got off the phone with Tom and she has a low grade fever...This is to be expected...The bad days are coming...Tommorrow Kaitlyn will start a new drug called ATG (anti-thymocyte globulin)...It is an antibody made in horses..It helps also to suppresses the immune system...Many side effects from this and she will be watch very carefully..Also tommorrow she starts Cyclosporine (CSA for short)..This drug she will be on for about 9 months...This drug helps prevent rejection and graft verus host disease...One more new drug tommorrow is Methylpred...This is to help engraftment and prevent graft verus host disease (GVHD)...Things may get unstable for Kailtyn from here on out...I am so proud of her and all the staff just love her laid back personalitly...Our big day is coming soon and Kaitlyn will have a new chance at having a normal life..It is very tiresome trying to get everything done, but somehow we do it...Kirstin and Tommy are awesome....Tommy is still having ear issue but for now his bleeding has stopped...No fevers but I keep a very close eye on his ear...The weather here has been great for the past few days...High 50's and lows in the 30's.. Our friend Max is very unstable and has been for a few months...Last night and today especially...Pray for the strenght that his family needs right now...They are wonderful people and need a miracle to happen...
Kaitlyn had some visitors today..2 Minnesota Vikings players came to visit the unit....I forgot their names but took lots of pictures...They were some pretty big dudes...Told them I was a Jag fan!!!!...Take the time to enjoy your love ones because tommorrow may be to late....Love Susan
Monday, November 17, 2003 1:24 AM CST
Day -5
For the people who have never been thru a BMT you start on minus days and work you way up to 0....On Day 0, which will be November 22, Kaitlyn will receive her new stem cells. She continues to amaze us with her upbeat little personalitly..Her smile is worth all of this...Her appetite is still with her...I know sooner than later she will slow down and may quit eating at some point....She is all done with her Busulfan chemo drug and starts at 4am Monday her Cytoxan chemo drug...With Cytoxan diaper changes are every 2 hours around the clock..She will be getting this chemo thru Friday...On Wednesday she starts a drug called ATG. I will expalin that later...Tom and I are holding up but it is very tiresome..With Kirstin and Tommy also here we stay very busy....Tonight I noticed Tommy's ear was bleeding...I cleaned what I could and will call first thing in the morning....With his history of ear problems I kinda have the feeling that he will need them replaced again...I pray not but the choices are very limited...That would mean surgery and hospital stay...Somehow we will get thru this.....Kirstin has been up to see Kaitlyn and painted some on her windows. I had wanted to get some decorations for her room but I have no time to even get to the store...I should be sleeping now but can't....Our dear friend Max is still holding on.. Please pray for him and his wonderful family...Thanks for checking in on us it helps to know complete strangers whom we have never met pray and care for our family...The days are going to get harder for Kaitlyn but I know in my heart we are doing the only thing to save her life....She is by far the most bravest little girl I know...When you think your day is just a lousy one and the traffic is aweful and the lines in the store are long, take a step back and be thankful you can be living a normal life....I have no clue to what a normal life is and I love being the Mommy to Kirstin, Tommy and Kaitlyn even if it means living the way we are....People have asked if we needed anything and I always so no because thats me.. Well, Kirstin would love to get some mail and she is starting to get interested in scrapbooking and Kaitlyn loves babydolls (they need to be new and still in the package)...If you know Tommy, he loves Matchbox cars and trucks......
Love , Susan
Friday, November 14, 2003 9:34 PM CST
Things are moving along. Kaitlyn is doing good...She is still full of smiles and loves everyone that comes in the room. She loves pulling all the tubes that are connected to her...We have her in a bra, who would of known that a 7 month old needs to wear a bra, but if we did'nt have it on her she would pull her central line out...I stayed with her the last 24 hours and Tom is with her now...Tommorrow we have a special visitor coming to the house, Mr Ronald McDonald himself....Lets see if Tommy likes that..Tommy is adjusting to living here and wearing his jacket outside...I have asked him several times if he wants to go home and he has told me NO...Right now Kirstin is making a tent with her bunkbeds and Tommy is being really silly...We should have a computer soon in our hosptial room but right now we our using our laptop...Should I say Tommy's laptop...He is waiting for me to get off so he can play Blue's Clue's...Our friend Max was put on dialysis today...Please visit his site and pray for his family...Tom will add new pictures soon..We have been snapping them like crazy...When Kaitlyn knows we are taping her she looks so serious but I got some really good ones today...She still has her blonde hair but soon I know it will all be gone...Thanks for checking in on us and contiune to pray for our family...
Wednesday, November 12, 2003 5:00 PM CST
My intentions were to update sooner but with a crazy and sometimes overwhelming life you get out of tune and just deal with what you need to just to get by each minute of the day....On to Kaitlyn she went in today for her central line, MRI, lung wash, spinal tap and a hearing test...Everything went good...She does need hearing aids and we will address that later...Tom had to go by himself for all of this as I was not feeling well at all...Yesterday Tom was a little under the weather..Tom should be calling me soon with a phone # to her hospital room...I wanted to be with her so bad but I know in order for all of this to work we all need to stay healthy...My little girl will start one of her chemo drugs tommorrow...Her big day is scheduled for November 22, when she will receive the gift of a new life...I want to say Thanks to the mother who donated her babys cord blood because she is saving my daughters life...We will never know her...Tommy and Kirstin and doing great...The weather here is the same---COLD....I hope to be feeling better because I want to be with my Kaitlyn....It nice to read the guestbook so keep them coming...We have just started and their is no turning back ...I know in my heart we are doing the ONLY thing to help Kaitlyn...Her thousand watt smile would melt your heart...Pray for our family......
Friday, November 7, 2003 6:58 PM CST
Well all the visits for this week are over...Kaitlyn did awesome all week...Everyone asked does she ever cry? She is such a HAPPY baby and very content..I have a visit with her primary BMT doctor on Monday to go over everything that was done this week...She is scheduled to go in still on November 12th....Tommy has an ear infection and is on antibotics for that and ear drops....We have the weekend off and our appt. on Monday is at 3:30 so we have alot of time to go out and do some things....I just wished it was a little warmer here...I still wonder how do people survive up here in the winter...Its COLD!!!! We bought Finding Nemo and its really a cute movie...Kaitlyn enjoyed it too!!! I want to wish my Mom a Happy Birthday today and my brother Steve congradulations on your new job....Have a great weekend and will update on Monday with details on her overall health....Take care Love, Susan
Tom posted some new pics today...
Wednesday, November 5, 2003 10:39 PM CST
Today Kaitlyn had an EKG and a chest x-ray...She did great with both...We meet with our social worker and went over several things. Then the last thing to do was sit down and go over the overall scheduling of the transplant and medicines she will be getting thru out the entire process..Everything is about the same as Tommy's transplant with some new stuff...Our eye exam yesterday was very long...Kailtyn like Tommy does have clouding of the cornea...Tommorrow is a very easy day with a class on the hickman line and a consult with pulmonary....Tommy has drainage from his ear so we are going to get him seen by someone tommorrow...Kirstin is loving school...Only 4 kids attend right now...She is the oldest....They prepare lunch for them everyday....She can come back to the room if she wants too...We have a date for the transplant.....Kaitlyn will go in the hospital on Nov. 12 for alot of things...I will go over all of them later...Her transplant day is November 22..Tom is having problems with his sianatic nerve in his back...Went to see a doctor and will have a follow up visit on Monday..Mom and TC left today and should be home by Sunday...They are stopping in Stone Mountain, GA this Friday to celabrate her birthday with her sister and family....It is still cold here...I say that knowing we have 5 more months of it....We are trying to figure out the camcorder and put pictures on the web page...Maybe with extra time this weekend we can...Thanks for checking in and sign their guestbook...Love, Susan
Tuesday, November 4, 2003 8:09 AM CST
Our first day with work-up week went well..Kaitlyn was awesome..Her neuropsych test was right on track with her age...A score of 100 is average and she scored 101!!!! I knew she would...We then went to an audiology consult and she is hearing everything. One of the test they performed they were unable to get any results so when she goes in for her central line we are going to have an ABR test done...I will go into that more when it is done. Then we had some time to eat lunch...We brought Kailtyn back to the RMCH house then Tom and I went to a BMT class..Needless to say it was a refresher class for us...Our day was over after that....Today we see the eye doctor....This is one I wish we could canel...From years pass this appt. takes forever..Then we have an Echocardiogram later in the day....My mom and TC leave in the morning to drive home...What a hugh help they have been...It snowed yesterday and Kirstin went out and did snow angels...Tommy went to the window, we face a courtyard and he said "SNOW COLD""...He will get out there but for now he would rather stay inside and watch his videos....I will say this is a weather shock for all of us..Its really cold here and its only fall...Well I need to get moving now....Love, Susan
Sunday, November 2, 2003 12:03 AM CST
We made it to Minnesota around 8:30 last night...The trip went great and the kids were angels....Its cold here but I kinda like it cooler anyway....They are calling for snow flurries tommorrow...The u-haul is unloaded but we are not unpacked by no means...We are in the new house at the Ronald McDonald House...We have never stayed in this one...We have a small kitchen area a bedroom and a hugh bathroom space....We have 3 different rooms so thats great...Our # here is 612-379-2896.....Our room # is 433...I will place the full address on the bottom of this page....Our laptop is hooked up in here to which is a bonus...Tommy can play his games and we don't have to go to the computer room for updates....Today plans are to unpack and hit the store...I want to thank everyone for checking in on us....Until next time.....Love, Susan
Tuesday, October 28, 2003 8:57 PM CST
Tommorrow we are leaving Florida. I hope the weather is okay for the trip. We should be in Minnesota on Saturday evening. I will do my best and update when we get there. Everyone is doing good. My mom and stepdad are driving up with us pulling the uhaul.Gosh this is harder than I imagined.Our friend Max is not doing good at all and he may be an angel by morning.I just want to close my eyes and make all this go away.We have only begun......
Friday, October 24, 2003 8:18 AM CDT
The story aired yesterday. I have a link for it
www.firstcoastnews.net/news/news-article.aspx?storyid=9706
Everything is ready for tommorrow. Our first Krusin 4 Kaitlyn...Tommy is still running a fever. I hope it breaks before we leave and he is feeling better. We plan on leaving our home next Wednesday. Should arrive in Minnesota on Saturday. We are spending Halloween in Missiouri with family. Their costumes are adorable. Our friend Max had to be intubated for the 4th time. His link is below.Send prayers and good karma to his family. He has Hurlers also and is about 70 days out of transplant.Have a wonderful weekend and I will try to post pictures from this weekend sometime. I still need to pack..
Love, Susan
Thursday, October 16, 2003 0:40 AM CDT
Everything is moving fast here. Only 2 more weeks and we will be on the road driving to Minneotsa. I am trying to pack but its hard. I have some awesome news to share. A news station here that did stories on Tommy in 1999 are going to do a story about Kailtyn. The interview is set for this Friday. I am nervous but I want to share my story with others. For the people that live in Jacksonville Channel 12 will air the story sometime next week. When I have a date I will update. I want to let the community know we are having a "Kruisin for Kaitlyn" fundraiser October 25. Tommy is over his cold now but Kaitlyn has been stuffy for the past fes days. She needs to be healthly for her transplant. So pray what ever bug she has it will pass. I mentioned a little boy named Max several times and he needs extra prayers as he continues to fight for his life. No child should ever have to go thru this.I sometime ask myself how many times can your heart break.....I need to stay strong for my family and somehow I will. Thanks for the guestbook comments. Keep them coming.They help!!!!! Love, Susan
Monday, September 29, 2003 9:15 AM CDT
Only 30 more days and we are leaving...I have so many thoughts running thru my head that I just wished they would all go away. I know that with Kaitlyn having her bone marrow transplant done at this age she can have about a 90ormal intelligence.she is such happy baby...She has sleep all night since she was 2 weeks old..She started rolling on Sept.5th and has not stopped...She always looks for Tommy. He makes her laugh all the time. Tommy came down with something last week. Took him to the drs. and no ear infection and no streph throat just an upper respitory infection.He still sounds full of junk.His is still full of energy!!!!!! We decided that school right now for him is on hold.My intention was to keep him from bringing something home to Kaitlyn but I guess I was too late. I try and make sure he does'nt touch her toys but when he does I wash them right away... One of Tommy's drs. here called Dreams Come True,it is a Jacksonville based wish-granting organization.We asked ourself what does Tommy LOVE to do and #1 is watching his movies and #2 is playing on the computer with his games. We have a TV for him but not a computer.He uses ours and spends about 3 hours a day on it. We decided to ask for him a laptop computer. With this he will be able to use it anywhere. Tommorrow we meet with them and Tommy will have his DREAM COME TRUE!!!! I don't know how much he will understand but he will enjoy picking out new software. This will be a day to remember...His Great-Grandparents from Virginia will also be here. They still have no power from the hurricane a few weeks ago and they are coming here for a few days. About 8 relatives will be there to see him receive this. At least there are some days that are happier than other.I never dreamed that I would be preparing for a trip like this. Kaitlyn is an angel and we are going to try and save her life. Tommy is 4 1/2 yrs. out of transplant and continues to have many medical problems. Kaitlyn will have the same path for her as Tommy. Sometimes I wonder how do we keep going but we do. I have come to this, everything I have is materialistic and replaceable, but my children are not....With that take each day you have and tell your kids how much they mean to you and given hugs and kises!!!!
Thanks for stopping in on us.... Love Susan
Monday, September 29, 2003 9:15 AM CDT
Only 30 more days and we are leaving...I have so many thoughts running thru my head that I just wished they would all go away. I know that with Kaitlyn having her bone marrow transplant done at this age she can have about a 90ormal intelligence.she is such happy baby...She has sleep all night since she was 2 weeks old..She started rolling on Sept.5th and has not stopped...She always looks for Tommy. He makes her laugh all the time. Tommy came down with something last week. Took him to the drs. and no ear infection and no streph throat just an upper respitory infection.He still sounds full of junk.His is still full of energy!!!!!! We decided that school right now for him is on hold.My intention was to keep him from bringing something home to Kaitlyn but I guess I was too late. I try and make sure he does'nt touch her toys but when he does I wash them right away... One of Tommy's drs. here called Dreams Come True,it is a Jacksonville based wish-granting organization.We asked ourself what does Tommy LOVE to do and #1 is watching his movies and #2 is playing on the computer with his games. We have a TV for him but not a computer.He uses ours and spends about 3 hours a day on it. We decided to ask for him a laptop computer. With this he will be able to use it anywhere. Tommorrow we meet with them and Tommy will have his DREAM COME TRUE!!!! I don't know how much he will understand but he will enjoy picking out new software. This will be a day to remember...His Great-Grandparents from Virginia will also be here. They still have no power from the hurricane a few weeks ago and they are coming here for a few days. About 8 relatives will be there to see him receive this. At least there are some days that are happier than other.I never dreamed that I would be preparing for a trip like this. Kaitlyn is an angel and we are going to try and save her life. Tommy is 4 1/2 yrs. out of transplant and continues to have many medical problems. Kaitlyn will have the same path for her as Tommy. Sometimes I wonder how do we keep going but we do. I have come to this, everything I have is materialistic and replaceable, but my children are not....With that take each day you have and tell your kids how much they mean to you and given hugs and kises!!!!
Thanks for stopping in on us.... Love Susan
Tuesday, September 16, 2003 8:20 PM CDT
We have a date for Kaitlyn's bone marrow transplant. It will be on November 18th...She has her work-up week Nov. 3rd thru the 7th. On Nov. 10th she will enter the hospital and have her central line placed. We will be leaving Florida October 29th to drive back to Minnesota. These dates sound so far away but it is only 6 weeks away. I still feel numb from everything that has happened. Kaitlyn is such a good baby, and to put her thru this saddens me to no end. Not a day goes by that my heart does'nt hurt. I have so much to do and really can't even begin to imagine what lies ahead. I know we went thru it with Tommy but it is so hard to think about this.
The fundraiser is scheduled for October 25th. It is called
Kruisin for Kaitlyn.It's a poker run in which 3 resturants are involved. The best hand wins. Someone has donated a 3 day cruise to anywhere you want to go and we are raffling that off. I am really thankful I have such a wonderful family and they are doing a great job in helping us. I just wished they all could come to Minnesota with us.
Tommy is doing great in school.Kirstin had a progress report and right now all A's...Thanks for checking in....Sign their guestbook...
I mentioned a little boy named Max in my last update and he contiunes to fight for his life.
http://mighty-max.com
Let your kids know they are #1 and hug them tight...Love Susan
Tuesday, September 2, 2003 11:46 AM CDT
We finally returned home a week ago...Our ride home was great. We stayed the weekend with Tom's family in Missouri because our alternator went out on us . We were about 15 minutes from their house on Interstate 54 driving with no lights on... We made it....We missed our turn off in St. Louis so we came a different way home. We stayed on Interstate 55 then 72. Saw a lot of country land and it was nice.....The kids did great.....
On to the medical news....Tommy went back to school today. He was a little mad but I know it will take time to adjust. It gives me a little break in the morning to do things I need to get done..He still has 2 scars on the side of his legs but he is back to his old self...Jumping on his bed as if it was a trampoline....It makes me smile!!!!He is such a fireball and to see him bounce back like this is awesome.....
As for Kaitlyn she is doing great...While we were in Minnesota we set a date for her transplant...We would be back October 13th for her work up week...During our drive home we decided that we needed some more time so I talked with them and now we are shooting for her workup week for November 3rd....I still need to call and confirm it...I am scared to death....I know that the eariler the transplant is done the better....But she is almost 5 months old and to go thru what we did for Tommy then have to do it for Kaitlyn I am scared....I know what can happen and that is difficult to consume....We are living day to day and making the memories last forever in our hearts.....Kaitlyn is a very very happy baby.......
We are having a fundraiser for us...It is gonna be called Kruzin for Kaitlyn....My brother, Steve and his friends are setting it up...It will be a Poker Run set up at a couple of resturants....As soon as I know a date I will post it...Hopefully October 25th so we can be here. Tom will have to be gone from his job so we are gonna be tight on money and going thru this before it is very hard to keep up your bills at home while in another state....I am at the point where I don't care how much $$$ it cost we are going to save my babies life.....We will be gone thru the hoildays too....Oh well we will be together as a family and that is what counts.....Kirstin is adjusting to everything just fine. She is a special big sister. Never complains and always there for us....I have so much to do and I know everything will work out....I meet some families there that are going thru BMT here are their web pages
htt://mighty-max.com
www.caringbridge.org/ia/isabella
www.caringbridge.org/mn/taylor
I met Max and Taylor's family. Max right now is fighting for his life and their family needs prayers and support right now.
Take care everyone and I would love to see everyone sign our guestbook...It means a lot to us that you check in on us....Take the time out each and everyday to tell the ones you love how much they mean to you....No one is promised tommorrow.....Love Susan
Sunday, August 17, 2003 2:51 PM CDT
Well its been a week now and I have some time to update.The kids are doing great....The weather is just like Florida HOT!!!!!Tommy had a full week of doctors last week. His heart is staying the same which is good news because he has a leaky valve and at any time without his meds his lungs could fill up with blood.His meds have stayed at the same dose for the past 4 1/2 yrs.We meet with the surgeon for his hips and knees and came to the conclusion that only knee surgery will be done now on Tuesday (Aug 19th).His hips need surgery but with everything else going on with Kaitlyn we can wait another year and address that issue. His knees will have staples placed in them. His knees and at a 16 degree angle (knocky knees) only time we want them to go to a 3 to 4 degree angle. He will have to have x-rays done over a period of time (1 yr. to 2 yrs) and when they reach that angle the staples come out. His surgery is scheduled at 9am. It is in and out the same day...Lets pray that happens and no problems come about. Anytime a Hurler child is sedated it is very risky but I know Tommy is a very STRONG boy and will bounce back great. Some other issued were discussed about enzyme replacement therpy. We were told on Thursday his enzyme is 5.2....This has been his level for the past 2 yrs. We meet with Dr. Peters again next week to discuss this issue. In the meantime Dr. Peters will go over this with others to see if it can benefit Tommy...He has the enzyme now and doing great but would be the 1st post bone marrow Hurler child to receive ERT.Just wait and see till this week to see what might happen. On Monday we have an EMG for Tommy...This is a painful test with electic shock to the wrist to see how bad his carpel tunnel is.He had that surgery in 2000. Going over the surgery and meet back up to discuss the result from the EMG....I am not looking forward at all to this test.We start this Wednesday with Kailtyn appts. On Thursday we meet with the BMT doctors to discuss her treatment. I do know that we have a 6/6 match with lots of enzyme...It would be stem cell. Bone marrow from an umbilical cord that a wonderful mother donated. I always wanterd to do that but have never been able to. My Kaitlyn could have boy cells....Kaitlyn is doing great and just a joy to have around.Tommy and Kirstin have been awesome thru everything. Kirstin has been going out with the Ronald Mconald staff to the movies, ice skating and on Monday she is going to a fair.....Right now I am at my friends up north having a ball. Yesterday we spent the whole day on the lake with their friends...It is a very different way of life up here and I could get used to this peacefulness....Renee would love us up here....Thanks everyone for checking in and sign the guestbook....Thanks Uncle Mike for putting new pictures on too....Check out the new pics.....Until next time....Love Susan
Friday, August 8, 2003 10:13 PM CDT
HELLO ALL, I'M DEBBIE, TOMMY'S , KAITLYN'S AND KIRSTIN'S GRANNY (SUSAN'S) MOM. THEY JUST LEFT FOR MINNASOTA AT 11PM EST FRIDAY AUGUST 8. TOMMY'S FIRST APPOINTMENT IS MONDAY THE 11, HE HAS A WEEK OF HIS YEARLY TESTS HE HAS TO HAVE, THEN THE HIP AND KNEE SURGERY IS SCHEDULED FOR THE 19 OF AUG. I AM IN CHARGE OF KEEPING UP THE WEB SITE. PLEASE KEEP ALL OF THEM IN YOUR PRAYERS, AND THANK YOU ALL FOR ALL YOUR PRAYERS. I DO LIKE THE PHRASE I READ IN ONE OF THE ENTRIEY, PUSH, PRAY UNTIL SOMETHING HAPPENS!!!. ITS GONA BE A LONG 3-4 WEEKS AHEAD OF THEM, TOMMY IS A STRONG BOY, AND I KNOW HE WILL COME BACK, NOT HAPPY TO BE IN THE BODY CAST, BUT HE WILL GIBE IT ALL HE HAS. UNTIL LATER, LOVE TO ALL, DEBBIE. MY EMAIL ADDRESS IS
DEBIJOJAX@ATTBI.COM.
Thursday, August 7, 2003 9:50 PM CDT
I have been really busy trying to get ready for our trip. We leave out tommorrow and I still have a ton of stuff to do...School started today for Kirstin and Tommy. Where did the summer go?I have been preparing for this trip all summer and it is here and we have to leave tommorrow.We will drive straight thru. Between me and Tom we should be okay. I will try my
best to update while we are gone..I hope we find some answers about Kaitlyn while we are there. I did find out there were 2 cord blood donors found for her.More test need to be run to find the enzyme level on them. We are still numb from everything and sometimes wonder how we made it this far.I need a whole week to catch up on sleep.I will have time in a van for 25 hours to sleep......I would like to say Thank You to Mr. Jackson for letting us use his van for this trip. I will be having a birthday while I am in Minnesota. It's August 12...My sister-in-law is due with my newphew today but I hope she has him on my birthday.....Congradulations Sean and Melissa and remember to make the memory last!!!!!!Can't wait to meet him when we come home. Tommy is doing good...Kirstin liked her 1st day of school. She will be going with us and have some of her work faxed to us while we are there.Tommy will be the the newspaper next week. I will try to get a weblink for that and post it.Thanks everyone for checking in and sign our guestbook..... Until next time....Susan
Monday, July 21, 2003 9:46 PM CDT
So much has happened since my last update. In my last update I was under the assumption that Kaitlyn was on the National Transplant List for a donor. Little did we know she was'nt. I had to get approval from my insurance company and with one phone call and less than 72 hours later we were approved.Then we needed more blood drawn and shipped out again. As of today we are still waiting to see if she has a donor for transplant. In the meantime I am trying to understand more about ERT. (Enzyme Replacement Therapy).As it was approved in late April by the FDA. So many thoughts are running thru my head and at times it is so overwhelming.When we found out about Tommy in 98' it was just undergoing clincal trails and I followed the progress very closely.At that time we went with a BMT(bone marrow transplant) to help our son.If you have never been involved first hand with someone who has gone thru a BMT the thought of going thru it again is just heart wrenching.You watch hopelessly as your baby gets very very sick and then wait and wait and hope you made the right decision for them and pray that the transplant takes. Tommy's transplant is almost a complete failure.His enzyme level is very low. I want to see if Tommy would benefit from ERT.I look at it this way what could it hurt.Tommy would never make it thru another BMT because of his heart.He is on 2 heart meds now for 4yrs.
Then with Kaitlyn. Do we go with ERT now while we wait for a BMT.We know with ERT the enzyme does'nt jump over the blood barrier to reach the brain to stop the progession.Then on the other hand a BMT is so risky and my stomach is in knots trying to comsume all the information. I wished their Dr. here would step in and help with this. As I learned with Tommy over the past 4 yrs. you are their only hope. I make the phone calls for answers...I dig and search and try to remain normal. Their Drs. here at this point have been not supported.We are still shocked from evrything and take one day at a time.
We are leaving Florida on August 8th for our trip back to Minnesota. 25 hours one way for us. My husband is going and all the kids. Tommy will have his surgery and I am scared to death about.Kailtyn will be looked at. I have a million question to ask. I hope we find our answers and are able to make the right choices for our kids. I just want to be normal again. Not have all of this before us.Why us..Kailtyn is still a great baby. Happy all the time. Tommy is a fireball and his million dollar smile would melt your heart. Then my daughter, Kirstin who turned 9 on July 14th, she has been thru so much and will continue to go thru much more and stands with us and loves her brother and sister.
Anyone that has advice on hip and knee surgery pass it my way. Thanks everyone for checking in on us. We have only begun......Susan
new photos added...
Friday, June 20, 2003 11:10 PM CDT
Here is what is happening so far...Kaitlyn had her blood drawn about a month ago to find out if anyone in the family would be a match for her. Nobody is a match.I recevied a call this week and she is now on the National List for bone marrow and cord blood donors.I still feel numb from everything. Kaitlyn was supposed to be a healthy baby. She is by far the most happiest, content, bundle of joy!!! I can't even begin to think about what is going to happen to her.With Tommy he was diagnosed at 15 months. We found out about Kaitlyn when she was 13 days old. Somedays are easier than others but then when I go to bed at night it is hard. No baby deserves this illness and we are still trying to understand what went wrong with the test that was done on me while I was preganet with her.How can a MISTAKE like this happen.
Tommy is doing well and Kirstin is enjoying her summer.We took off to Orlando last weekend and went to Sea World..My mom keep Tommy and Kaitlyn for us and we had a great time.I really tried to enjoy myself but not one second went by that i did'nt think of what is happening to us.It is so overwhelming to know that Tommy is having surgery in less than 2 months and Kaitlyn needs a bone marrow transplant..How are we supposed to handle this? Everyone tells us that God does'nt give you more than you can handle but my heart aches every second that I am awake.How does one stay happy or even focused...I guess only time will tell.I have been and will be the best mom for my children. They are what I live for and wake up to each morning.
I am getting some pictures put on a disk so I can load them here.Check back next week for those. I noticed alot of people checking in on us and I would like to say thanks. would like it if everyone would sign the guestbook for us.
Love Susan and family
Wednesday, June 4, 2003 0:27 AM CDT
The last time i did an update i never thought my world would change like it did....On April 9th 2003 I gave birth to a beautiful baby girl. She weighted 7pds 14oz and 21' long.She had alot of blonde hair. I always wanted a blondie. Kaitlyn Jewel was finally here. My world along with my family came to a stop on April 22nd at 4:57 pm.We got a call telling us that our new daughter was missing the enzyme and she was affected with Hurlers. I was speechless and could'nt even think. Back in Sept.02 my baby was tested to see if she was affected.I was 11 weeks preganet. The results were "fetus UNAFFECTED with Hurler Syndrome.I was so HAPPY....
Alot of things are happening now and to be honest my head fills like it is going to explode at times.I do know that no one in the family is a match for her as far as a bone marrow transplant.This was'nt supposed to be like this.I am so afriad for her... She is 8 weeks old and a very GOOD baby. She is perfect except that she is missing one enzyme. I am very mad, upset, confussed from all of this. No one has called us since. Again our life we be forever changed. I have to believe that things happen for a reason but this is to hard for me to understand.I do know at this time I am trying to remain somewhat normal.Tommy is schedule for hip and knee surgery August 19th in Monnesota. We will be their August 11th for his 4 yr. checkup. A week worth of long days in the clinic.I am so proud of Tommy and how far he has come. He did have his dental surgery May 9th. The staff was ready for anything. Tommy did great. We stayed one night in ICU for precautions.His eating is coming back slowing. He had his 4 top teeth pulled, 3 crowns, 2 teeth pulled in the back and his bottom teeth shaved.He is a fighter.Back to his surgery in Aug. Tommy will be in a body cast for 8 weeks.
My family needs extra prayers now as we try to understand all of this and make the right decsions for our children. I have 2 children with a TERMINAL ILLNESS.WHY WHY WHY WHY!!!!
Friday, April 4, 2003 11:14 AM CST
Tommy was scheduled for surgery today but developed a cough this past Monday. So we rescheduled for May 9th.He has pink eye too. Something that is going around in his classroom. He has been with me for this past week and I enjoy him staying home..We had his enzyme tested and the results are in. Back in July of 2002 his enzyme was 5.2 and as of March 2003 it is 5.3......For the most part I understand it is low but at least he still has the enzyme in his body. Even if we thought of another transplant one would not be done because his body is producing the enzyme.His hip and knee surgery is still set for September 9th in Minnesota. Anyone with any suggestion on a child being in a body cast for 8 weeks send them my way. The whole family is going also. We are traveling by car,which we do all the time.Tommy's 5th Annual Golf Tournament is set for May 31st.Anyone in Jacksonville Florida that day is more than welcomed to come.Spring sure is here..Pollen everywhere. Actually it has been warm for several weeks. We have had our AC on for several weeks.
Our baby girl is due Monday 4-7-03. I am feeling great and have dilated to 2cm. If she doen'nt come by Monday we go in on Tuesday to have her.Her name will be Kaitlin Jewel.I will update when she arrives...Until then pray for peace!!!!
Friday, February 21, 2003 12:13 AM CST
Its been a while for an update..Time really flys when you are busy..Lets start off by telling everyone that Tommy will turn 6 this Monday.(2-24-03)....I am so thankful for that...We have a party scheduled for him at a local park. He is doing great in school and still loves to play on the computer.He loves it so much that his great uncle gave him his own computer to share with his sister so he is not on ours all the time.Tommy is scheduled to have surgery on April 4th for his teeth. We have met with different dentist and found one that will do the surgery at the childrens hospital here.I am nervous about Tommy having to going under anesthesia especially at a hospital that is not as familiar with Hurler kids.I am getting his medical records of his past surgeries from Minnesota to give them here. Tommy has had problems with anesthesia and with the more information they have I will feel somewhat at ease.Its hard to beleive that Tommy is 4 yrs. out if transplant...He is still a little guy but he is such a happy, go-lucky, little fireball of a guy!!!!Our plans for his hip and knee surgery were changed from 1-28-03 to 9-9-03..As most of you know I would have been 7 1/2 months preganet this Jan. and we knew it would have been extremly difficult for everyone so we changed plans. I only have 6 more weeks till out 3rd child is born.Everyone is excited and boy I can't wait...We had a sonogram this week and she is fine.Yes a little girl...He told us she weights about 5 1/2 pds right now and expect a baby over 8 pds.We like the name Kaitlin Jewel....Tommy calls her Kate right now.And Kirstin she is doing great in school. Her 2nd report card was straight A's again. We are proud of her.She bowls on Saturdays and is really excited about the baby....She is going to be ALOT help to us with her.Thanks for everyone checking in on us and will let you know how the teeth surgery goes.....Take care ...Susan
Tuesday, October 08, 2002 at 04:33 PM (CDT)
Hello to everyone who checks in on us.....Things are going well here in the south...Still very hot and we can hardy wait for our first day of fall...Imagine everyday sky -
rocketing into the 90's....
I have some great news to share with everyone...We are expecting our 3rd child in April. I am 4 months pregant. We traveled to West Palm Beach a few weeks ago for a test called CVS. The results are in and the baby is not affected with Hurlers!!!!!!! If anyone wants to know the sex e-mail me and I will let you know....Some people like surprises....
The MPS walk here in Jacksonvile has been moved to Nov. 2nd. If anyone is in town please let me know....Tommy is doing great...Planing already for our trip back to Minnesota in Jan./03.....Take care everyone.......Susan
Monday, September 09, 2002 at 11:32 AM (CDT)
I must say this year is flying by...Already September and their is x-mas stuff in the stores along with winter clothes...Its funny to say that we don't wear winter stuff till late November...I do have the results back from Tommy's engraftment.His enzymes level is the same as it was in 2/2002-----5!!!....His donor cells are 10%....That is lower. I have questioned his drs. about what can be done and at this moment NOTHING can be done. They tell us that his body still has the enzyme and it may contiune at this level forever....This is all Tommy may need to continue to do well....As his mother I still feel as if we are still hanging upside down on a roller coaster ride....Tommy is doing great in school and in his private therpies...On another aspect of Tommy they want to move forward with the hip and knee surgery.So I called and schedule it. It was either Dec.10th 2002 or Jan. 28th 2003.I picked Jan.28th. I do not want to be away again during x-mas from my family.At that time we will get his 4 yr. post BMT workup the week before and then proceed with the surgery...Again they will retest his enzyme level and at least I will have a better feeling about this surgery. If it drops anymore I may think really hard about not doing the hip & knee surgery.
This October 19 we are having our 1st MPS walk here in Jacksonville, FL.It is the 3rd year the MPS society has done it. I am helping out by contacting the media and passing out flyers about it. If anyone is in Jacksonville that day I would love for you to come.Thanks for everyone checking in on us and I would love for you to sign the guestbook.
In memory of everyone who lost their lives on 9/11 light a candle for their families.Peace to everyone!!!!!
Thursday, August 15, 2002 at 04:47 PM (CDT)
Summer is over here at least going to bed late and sleeping in is over!!!! The kids started school August 7th..I was a little nervous about Tommy going this year but everything is going great!!! He is doing awesome...I had his labs drawn and mailed up north last week and I should know something today or at least by tommorrow about his enzyme level..It is driving me bonkers not knowing where he stands..I have added some new pictures of the kids..One picture is of Tommy and Jason. I met Jason and his parents here at a clinic and they went to Minnesota and had a successful cord blood transplant..As soon as I know about his labs I will post.....Susan
Friday, July 12, 2002 at 10:48 AM (CDT)
Hello Everyone,
Thanks for checking in on us...Tommy is doing fine. I am in the process of having his enzyme level tested the 1st part of August.His enzyme as of Feb 02' was 5. I would love for his # to go up higher so that is what I need everyone to pray for..From this test we will have a better idea about is hip and knee surgery.If Tommy no longer has the enzyme I feel that the surgery would not be useful.I would not want Tommy to go thru any more painful things.Just pray his #'s are up!!!!
July 20th thru 27th our family will be in St. Augustine which is about 1 hour from us for our family reunion. I am excited about this. We have been going to the beach alot and it is sad to say that Tommy does'nt really like it as much as last year..I still take him and he sits in the car with the AC on half the time..Oh well we still have a good time.He still has fun!!!! School here starts August 7th and by no means am I ready. I would love to keep them home till Sept. Tommy will go into Pre-Kindergarden this year. Last year was Pre-k for 3 and 4 yr. olds. I am a little uneasy about this move. I am always nervous about change with Tommy.
My daughter will turn 8 this Sunday..We are having a pool party for her this Saturday.She will be in the 3rd grade this year.I will add new photos next week.We got a new computer so I will be able to add them. Thanks for checking in and sign the guestbook too....!!!!!
Pray for his enzyme level to go up!!!!!!
Love Susan
Monday, June 03, 2002 at 09:47 PM (CDT)
So much has happened since my last update so here goes......Tommy and Kirstin got out of school on May 23rd and I am so glad that summer has begun..We had Tommy's IEP meeting to see what services he will be getting next year in school and he will be getting speech therpy...I have asked for 2 years for this and finally he will be....It will not be one on one like it is for his private speech but at least he will be getting this service..Also this weekend (June 8th) is Tommy's 4th annual golf tournament....My brother started this to raise money for our family and it has been a great success....Tommy is still a ball of fire....He enjoys the big slides at the park and can do them all by himself.....It has been so HOT here that we also have been enjoying the pool....He likes to sit by the stairs and throw his racecars in for someone to get them at the bottom....We are trying to get him potty trained....He does it when we take him to the toilet but won't tell us if he has to go.....I am so proud at how far he has come so I know he will potty all by himself real soon....No date has been set for his hip and knee surgery...I need to call his Dr. because I have so many questions to ask....Tommy walks, jumps, run just fine and it is so hard for us to have him go thru surgery....When I know more I will update that.....On a sad note my Grandmother passed away on June 1st...I know she is in heaven with my father!!!! We are having Tommy's enzyme tested again in August and pray it goes up from 5.2.........Thanks everyone for checking in on us and hope that your summer will be filled with memories.......Cherish Yesterday----Dream about Tommorrow----Live Today!!!!!!!
Love Susan
Sunday, April 07, 2002 at 10:40 PM (CDT)
Wow!! its been awhile since I have done an update.Lets see.....This is what has been happening here in the south...Let me tell you the weather here has been nice....Tommy had his 5th b-day party at the bowling ally and everyhting turned out nice. His health has been great.His last cold was back in November.Last week though I got a call from his school telling me there had been an accident and 911 was called. My heart sunk for a second and then I was told his hand was caught in the door (the part where the hinges are) and if the door was to move anymore it would crush his hand..I was about 5 minutes from the school at the grocery store..Needless to say I made it to the school in a minute....When I arrived he was in the office with everyone and when he saw me he just cried and keep telling me his hand got stuck....If you already don't know but Hurler children have a fatter hand than most kids....The fireman arrived and looked at it and questioned me about Tommy...I felt that the hand was okay...By the way they got his hand out by lathering it up with soap.....Tommy then got to go and sit in the fire truck....His hand turned a little blue and grey around the wrist but he never let it get in the way of anything...Tommy is full of energy all the time...This Tuesday we meet for the first time with a dentist...From my point of view about seeing a dentist here is kinda scary. Tommy's illness is so rare and the thought of him going to have major surgery and going under anesthesia scares me to no end..The dentist I called has called me back and is real interested in Tommy and has told me he would understand if I choose to return to Minnesota for any dental surgery...I don't know yet if he has seen a child with Hurlers...Will know this Tuesday...Our appt. is 7:15 am...He wants to give us enought time before other patients come in by 10am....Our plans for his hip and knee surgery are still not definite. I do know that we would like to wait till October this year. I am going to call and schedule it soon...We have also been told that Tommy will start Pre-kindergarden this fall...I am so proud of him....
On another note I have a beautiful daughter who will be making her First Holy Communion on April 13th....She has already started to swim this year....I have to wait a little longer for the water to be warmer...Only 7 more weeks of school left..The kids had spring break early this year...My husband took vacation the same week..This was the first time in a long time that we got to stay home...All of his vacations were around Tommy's trips back to Minnesota. We took the kids to Valdosta, GA to an amusement park called Wild Adventures. We had a great time...
I also received Tommy's BMT #'s and even thought they are low he still is making the enzyme and the transplant is working...He has 16% donor cells left in his body with an enzyme # of 5....At this time another bone marrow transplant would not be called for and he is not regressing with this diease..They will recheck his #'s sometime later this year...It never ends the constant roller coaster ride we have been on for the last 4 years..To know Tommy and Kirstin its all worth it...He is full of life and his million dollar smile would melt your heart....On that note let me go and will update real soon with the news about the dentist....Love Suaan
Saturday February 16, 2002 9:55 PM CST
Now that I have been home for a week now I should update...It was overwhelming for me this week trying to get back into everyday stuff and knowing that Tommy needs more surgeries. I do not even know where to start...First he needs to see a dentist and I would like a dentist who has worked with Hurler children...If I cannot find one local I will call some in Tampa area. I know that several Hurler kids live there...If my heart and gut do not feel good about the dentist we find I may be returning to Minnesota for his dental work.I just wished that Tommy did'nt need any more doctors..Here the other big issue!!!He needs hip and knee surgery this year...This surgery will place him in a body cast from his toes all the way up to his chest with a bar between his legs for 6 weeks...YUK!!!!!! I want Tommy to run free this spring and summer on the beach or wherever we go....We love being outside!!!It only takes about 30 minutes for us to be on the most beautiful side of the east coast...The beach!!!! Tommy loves to play in the water and chase the birds....So many things to plan this year...
Tommy has a hugh milestone coming up on Feb 24th.....He will turn 5 !!!!!!! 3 1/2 yrs.ago when we found out about Tommy I never thought he would be here for his 5th b-day.....Tommy has been thru so much in his little life....I am so proud of him...His speech is coming around and he repeats anything you say...He tries his ABC's and it is so cute...He skips some but then gets back on track....We are having a bowling party for him...He loves to bowl..Thanks for everyone keeping our family in prayer..Tommy's 4th annual golf tournament has been schedule for June 8th..Thanks Steve for everything you do for us...If anyone would like a flyer just e-mail me with your address....As I make our plans this year about Tommy I will update the news...I am still waiting for a test that will tell us how much of Kirstin's cells are left in Tommy....Take care and will update soon......Love, Susan
Thursday February 7, 2002 10:48 PM CST
I have some really GREAT NEWS....Dr. Peters told me today that Tommy's enzyme level is up to 5 !!!!!!! It was 2 in June 2001.His RFLP's (bone marrow engraftment) #'s were not yet available, but Dr. Peter's feel that with his enzyme # going up that his engraftment had to of gone up also.I was so Happy today.....As of now we do not have to do another transplant.We will have the test done again in 6 months...I can sleep a little better now knowing this....
I also was told today from his ortho doctor to plan his hip and knee surgery for this spring.I will explain this surgery to yall at another time....It does include Tommy being in a cast up to his stomach and down to his toes for 6 weeks and 6 weeks of therpy...I need to write to my other Hurler friends for some advice on this..
Tommy was so good today. We had a series of x-rays and usually it takes about an hour for this because his is crying and moving all the time...This time he got on the stairs and stood very still for the x-ray tech and it only took about 15 minutes.I was so Proud of him.....He also had to finish up on some neuro testing and we talked with this dr. and Tommy is still delayed in expressive speech. I knew this. They are going to help with back home with the school system.Tommy receives private speech 2x a week but they recommand him receive speech at school also...I have tried unsuccessful for him to get speech. They told me I should hire a lawyer.I will try again and hopefully they will see what the drs. up here do.
I leave here in about 12 hours. This weekend they are expected about 15 inches of snow...Wish we could stick around but I sure do miss home....I meet 4 other Hurler families---Carley, Kendra, CJ and Sumner...Keep them in your prayers. I will update soon and let you know when we are returning up here....Miss you Kirstin and Tom.......Love, Susan
Wednesday February 6, 2002 7:59 AM CST
I really thought I would be able to update sooner but yesterday was a very long day at clinic.We were there for 8 hours.So far I have news about his hearing and his eyes and his heart.His Echo and EKG test came back better than last year..A 50% fraction of you heart is the best.Tommy is a 66% and last year (2001) he was at 76%.He still has the leaking valve but the Dr.over all said he is doing great.He will stay on his 2 medicines for his heart.No increase in dose.
His hearing is normal and his tubes are still in place.We need to continue hearing test back home every 3 to 6 months.About his eyes he has some clouding of the cornea.They rate it from a 1 to a 4 and a 4 being the worst. Tommy is 1 1/2 .Last year he was a 1.While Tommy is under anasthia ? they will check his pressure in both eyes.This Dr. said Tommy looks great and his eyes are responding to the BMT from having the enzyme there.Tommy also had 2 days of neuro testing.He did great.He went all by himself into the little room for his testing.This was the first time for that.Today they will go over his test scores with me.Dr. Sharpio cannot beleive that Tommy is still not receiving speech therpy thru the school.Some phone calls will be made and hopefully changes will be done.Dr. Braulin (heart dr.) is concerned with his teeth.If he gets an infection it could lead to heart problems.She is checking for us to come here soon for his dental work.Also she is going to try to get us some finanical help.I think thats it...Today Tommy has his MRI and thats it.Tommorrow we meet with the ortho dr. and Dr. Peters who should tell us his BMT#.I just HOPE that his #'s are still there. He is being great with everything he has been thru.Colten has been helpful also.I do know he would never live where it is cold...Tonight is Bingo here at the house,and tommorrow they are having massages.I will update later.Thanks for everyone checking in on us....Love Susan
Saturday February 2, 2002 8:38 PM CST
Wow time sure does fly by up here. Yesterday we played paint ball.Let me tell you we had a blast!It was about 8:30 pm and we got all dressed up for a mile -n- half walk.There must have been thousands of stars and ever time you looked up you saw a shooting one.Our plan was to look for some others playing paint ball too.To make a very very funny story short in the end we won!!!Colt will have that memory forever..Just ask him what happened to his pants? Today we went out on a frozen lake. This was my 3rd time on it and the first for Colt...Very cold up here today and it snowed for about 6 hours.We are leaving tommorrow for Minneapolis.I'll get my rental car from the airport and go to the RMCH.I will be staying there so when I get a # I will let you know.Thanks for checking in on us. These past 4 days have been wonderful. I miss you Kirstin and Tom.Tommy is having so much fun with Joey and Matt.He is with them all the time and they are great with him..Take care everyone.....Susan
Thursday January 31, 2002 9:08 PM CST
Hello everyone,
Today was a very nice day here.It snowed a little.Nothing to stop us from driving into town(an hour away).Up here it is very different from Jacksonville.The town we are in has a population of 43.I am really enjoying the relaxation.We got some paint ball stuff and tommorrow we will have some fun with that.I am not looking forward at getting shot at,maybe I will lay low in the snow and look like a snowball.On our way into town we saw a Bald Eagle.Renne said it would be at the same spot when we drove home and it was.Tommy is being so good,he is always a happy little boy.Saturday we plan on driving on Lake Mille Lacs,after we go to Joey's basketball practice.Thanks everyone for checking in on us.Next week will be a very busy one.Take care everyone and I miss you Kirstin and Tom. Love Susan
Wednesday January 30, 2002 7:56 PM CST
Hello everyone....We made it here...Our first plane ride was a little rough but the second one was nice..It is 12 degrees right now..Wow I left Fl. at 80 degrees..It is supposed to snow tommorrow!!!Tommy did great on the planes...He enjoyed looking out the window and jumping in my lap...Not once did he sit in his seat...Colten was a hugh help today...Right now I am at Renee's and Joe's...We are in McGrath ,MN about 2 hours from Minneapolis..I miss you Kirstin and Tom..Paula and Steve Colten says hey and wants to tell you he already slipped on the ice....Take care and will update tommorrow...Love, Susan, Tommy and Colten
Wednesday January 30, 2002 7:56 PM CST
Hello everyone....We made it here...Our first plane ride was a little rough but the second one was nice..It is 12 degrees right now..Wow I left Fl. at 80 degrees..It is supposed to snow tommorrow!!!Tommy did great on the planes...He enjoyed looking out the window and jumping in my lap...Not once did he sit in his seat...Colten was a hugh help today...Right now I am at Renee's and Joe's...We are in McGrath ,MN about 2 hours from Minneapolis..I miss you Kirstin and Tom..Paula and Steve Colten says hey and wants to tell you he already slipped on the ice....Take care and will update tommorrow...Love, Susan, Tommy and Colten
Monday January 28, 2002 11:09 PM CST
Hello,
Well the time has come for us to return to Minnesota for Tommy's 3 year check-up.I am leaving with Tommy and my newphew,Colten on Wednesday Jan. 30th. Our work-up week for Tommy will be Feb.4th thru the Feb.7th.During that time they will re-check his bone marrow and enzyme level.As of June 2001 his bone marrow was 15% donor (you want it to be 100%) and his enzyme level was 2.His #'s are low and it makes us worry that his transplant has failed.Tommy will also see many other drs. and as I find out information I will post them.
For the first part of our trip I am staying with a family I met while we were there back in 1999.Hopefully it will snow alot!!We do alot of sleding,ice fishing,and snow mobiling.Let me tell you its so much fun there....
I am a little nervous about flying..There is no way I could drive the 25 hours to get there.My husband and daughter are not going with us this year.Tom is saving his vacation time so we can do Tommy's Make A Wish this year...Not sure what we would like to do but have a couple of ideas.
I also added some pictures to the page so check them out...Would love to hear from everyone so sign the guestbook..Check back to follow our journey....Love Susan
Saturday, September 01, 2001 at 11:17 PM (CDT)
Hello to all....I wanted to let everyone know that Tommy has started Pre-K. School here started August 7th so he has been going for a few weeks now..He goes all day on Mon-Tues-Thurs from 9-2. On Wed and Fri he only goes till 11am..I take him out early so he can go to private speech.Get this the school system here denied Tommy speech therpy.After testing him they feel he does'nt need speech. His receptive language (what he understands) is not delayed but his expressive language is. They told me from a educational view that this is okay and no need for speech.I do not agree with this at all. Thank goodness Tommy has been in private speech for over a year now and doing great. His speech therpist explained to me that their testing and school testing are not the same.We have a meeting this week with the school and I will be heard. I know now that you don't sign anything you disagree with and more testing will be done. I even have had 3 doctors from Minnesota write me letters for the school saying that Tommy would benefit from speech therpy..Until then you wait and wait and wait..
His teacher is wonderful. She is willing to go out and beyond to make things work. Tommy is doing wonderful and I have been told he is one of the most behaved kids.My biggest worry was lunch time because Tommy is a picky eater.I can count maybe 20 different kinds of food he likes thats it.After his transplant his appetite went down. Oh well at least he eats..
My daughter is in 2nd grade at the same school and doing so good. This school is under America's Top Choice and they are really big on writing and reading.She wrote a 6 page essay on her brother and what the BMT did for him. I am so proud of her.A friend's daughter goes to a middle school here and wanted to do an article on Tommy for her school paper.She implied in her article how the Ronald Mcdonald House helped us out and asking the whole school to save the pop tabs for us. The newspaper comes out this week.Can't wait to read it. Well take care everyone and pray that Tommy's #'s go UP!!!! Susan
Sunday, August 05, 2001 at 09:50 PM (CDT)
Well I have the results of Tommy's engraftment and enzyme level. It stands like this: Jan 2001 his engraftment was 23% donor and now it is 15% donor.His enzyme level in Jan 2001 was 4 and now it is 2. It does'nt feel good knowing that he is losing his bone marrow transplant. His doctor told us that he has seen other Hurler children with low #'s and they are they are doing well. Tommy is doing great RIGHT NOW...At the present moment there is NOTHING we can do to save this transplant.We are to sit back and wait till Jan 2002 to retest his engraftment. We need a miracle in the next few months I say....
Now for some good news!!! Tommy is talking so much better..He gets speech 2x a week from a private speech therpist. Also OT therpy 1x a week...Loves to play and play and play...Everywhere he goes he carries his matchbox cars..He loves bath time, stays in up to an hour..He is limited to NOTHING..Being in the pool or at the beach Tommy loved it..This summer we went to the beach once a week and he would chase the birds it was so cute to watch.
If anyone knows of other Hurler children who have lost their BMT or have low #'s pass their information along to me...Thanks..
Susan
Wednesday, May 30, 2001 at 08:21 AM (CDT)
Hello to everyone. In my last update I said we were going back to Minnesota for some test on Tommy. Well I made some phone calls and the test will be done here and sent to Minnesota. I am setting things up for June 12th. The results from his bone marrow #'s will take about 5 days and the result from his enzyme level will take about 2 months.This test will let us know if Tommy will have to go thru another transplant.Please pray that everything is okay...
Tommy is doing well.He has been enjoying the water...At the beach and at the pool.And now with school out in 2 more days we will go to the beach more. For some reason the pictures I added did'nt show up I will try again.Thanks for checking this and I will write agon soon....
Sunday, May 13, 2001 at 03:58 PM (CDT)
Hello,
I have added some pictures to the photo album...We had Tommy's 3rd annual golf tournament this weekend..What a nice and beautiful day....A little rain but boy do we need it....I found out this past week that Tommy and I are returning to Minnesota sometime in June to recheck his RFLP and enzyme level....I will add more picutres soon...Thank you to everyone who has check this page out.....Susan
Saturday, April 28, 2001 at 03:32 PM (CDT)
Hello to everyone...Here is a web page that will update you on how Tommy is doing.For those of you who do not know about Tommy's last checkup this past Jan. in Minnesota, we were told he is losing Kirstin's bone marrow.He is 23% engrafted..We need that # to be 100%.At this point all of his other test showed improvement.From this we know the bone marrow transplant has given Tommy the enzyme he was missing.How long and if he holds on to Kirstin's marrow we don't know.We are retesting again in June (2001).At that point we will know a little more if we have to gone thru another transplant.
Other Hurler parents have contacted me and I have passed along this site to them and I said hey I will make one for Tommy. I will add pictures soon.Okay lets see if this works....Take care ...... Love, Susan
Saturday, April 28, 2001 at 03:21 PM (CDT)
This page has just been created. Please check back for additional updates.
Click here to go back to the main page.
----End of History----