History

Tuesday, September 11, 2007 2:35 PM CDT

Well, it is hard to believe that it is almost Sydnee's 7 year Post BMT Anniversary! Whew!!! It seems like it was just yesterday!

Let's see, what is going on with our family these days????
Well, the big event this past summer was Sydnee's Make-A- Wish being granted. The 4 of us flew to Orlando and spent 5 days and 4 nights aboard the Disney Cruise ship! We had a great time! Sydnee received lots of special treatment and goodies. The kids loved meeting all of the characters and getting their autographs. Sydnee's favorite part was swimming with the sting-rays (Andrew wasn't too thrilled with that adventure) and getting her hair braided at the Disney Island.
We'd love to do it again but daddy wasn't too thrilled with the whole boat ride. I guess we will give him a couple of years to recoup!

School started at the end of August with Sydnee going into 2nd and Andrew into 1st! We sure are glad they enjoy school. So far so good!
We finally put Sydnee back in dance after a 2 year hiatus! She loves it! She is taking tap, jazz and ballet. Can't wait for the recital next spring.
She is still getting IVIG at Texas Children's Hospital but now it's every 6 weeks, instead of every 4. She is also receiving speech therapy and occupational therapy once per week (plus, also in school).

We are not looking forward to December though. On Dec. 4th she has to go back in for orthopedic surgery. This time they are doing the osteotomy on her left hip (the right was done in the summer of 2006) and putting screws in both ankles. A couple of days in the hospital and back in a wheelchair for a couple of months. We are praying that this will be it for a couple of years.

Daddy has once again changed jobs. Very much a promotion but a longer commute b/c of the Houston traffic. I told him, "Welcome to my world". He is now the receiver's coach for varsity football and the head baseball coach at Jersey Village HS in Houston. It is kind of weird b/c it's the same highschool that we attended many moons ago. Brings back lots of memories!
I am still working in the purchasing department at Harris Cty Dep't of Education. Like the job but hate the travel even though there are some perks!

Hope everyone is off to a good school year!
Please think of Sydnee on the 20th of September, her BMT Anniv. and say a prayer for her continued recovery!
Many Blessings to you all especially our MPS Family!
The Jensens

Tuesday, May 15, 2007 1:03 PM CDT

Wow, it has been awhile! Sorry!

Before I forget, HAPPY MPS DAY TO YOU ALL!!! Our thoughts and prayers go out to all the MPS families!

Everyone here is doing well. The kids are getting excited about summer approaching. Their last day is May 24th and they return Aug. 27th. Robb's last day is the next week and then he's the babysitter for the whole summer! It should be interesting!
Sydnee will be in 2nd grade and Andrew will be in 1st grade in the Fall. Another year come and gone!

Sydnee is continuing to improve. Maybe not as fast as mommy and daddy pray for but there are visible improvements. This year has been really good for her. Last summer started off a little rough with all of her surgeries but she is pretty much healed (except for the scars) and it has seemed to help. No pain in her hips or hands and her walking has really improved. She still has that "Hurler Gate" but thats a given!
She has had the BEST teachers this past year which we thank God for every day! They truly love her and are concerned about her health and spirit. Hopefully, she will be as lucky next year.
She has also made some good friends. Hopefully, as they get older they will understand Sydnee's differences and still love her!

Sydnee still visits TCH monthly (or more) for her infusion (IVIG) for her immune system. The doctors are not sure how long she will have to receive it but it could be several more years. Thank the Lord for a good insurance company with no cap.

Her endocrinologist has gone back and forth about starting her on Growth Hormone Therapy (which would be daily injections) but she has decided to wait another 6 months and re-examine her then. Whew!!!

Lots of appointments this summer - as usual!

Beware - the next time you see her she may be in glasses. At the end of June she goes to see a new opthamologist to check her eyes and they had said that if there was no improvement in a year then we would need to discuss glasses. Sydnee was actually excited but she may change her tune when and if it actually happens. I think she will look cute!!!
In Aug. she goes back to her Neurologist to discuss ADD therapy. I am hoping this could really help her in school with her attention issues.
She did go to her yearly Cardiology appointment in Jan.. and they have finally decided to start her on heart medecine - Enalapril. No side affects yet. She will have to start going every 6 motnhs now.

The big news of the summer is Sydnee's Make-A-Wish! Our family leaves June 10th for a 5 day Disney Cruise out of Florida. The kids are so excited! Sydnee talks about it all the time. At 1st she was inviting everyone until we sat her down and explained it all. She keeps calling it "HER" cruise!!!
We promise to take lots of pictures!

Hope everyone has a very fun and relaxing summer!
The Jensens

Monday, August 14, 2006 8:43 AM CDT

Dear friends and family!
Just wanted to post a quick note to update everyone on Sydnee's progress after surgery.
Sydnee had her orthopedic appointment a couple of weeks ago. First, they removed her bright pink cast which thrilled Sydnee! She was oh so ready to have that thing off! It had really been starting to itch. Then they took xrays of her right leg and hip. Dr. Phillips decided that she needed to stay in the wheelchair (no weight on her right leg) until the 25th of August (her next app't.). He said he could still see the "cuts" that he had made in her bones.
Next came trying to make arraingements with the school and the bus and after-school care for the wheelchair. Ughh!!! We had a meeting last Friday with her school. Everyone was involved (her new 1st grade teacher, the special ed teacher, diagnostician, principal, 1st grade ass. principal and the speech therapist) and they were very happy to see her. I think her new teacher and special ed teacher are going to be great! They both seem very caring and fun-loving!
So now everything is ready to go! She is on a special ed bus with a wheelchair lift that comes right to the door. She knows where she will sit her classroom and who will push her around (this was a worry for her).
School starts Wed. morning - bright and early! Please keep Sydnee in your prayers that everything will turn out great and that she will meet all sorts of new friends!

Before I forget - Andrew also starts school on Wed.. This is the Big year of Kindergarten! Hard to believe! He is actually pretty excited. He keeps telling us that he is going to meet cute girls in kindergarten! Ha-ha! Can't wait to see how he is going to do. Hope we don't get too many calls this year from his teacher!

Robb is returning for his 2nd year at Waller H.S. He seems to really enjoy the students and staff. Still teaching math and coaching football and baseball!

I will actually begin working full-time on Sep't. 1st. Not sure how all that will work out but it will be a big adjustment for everyone! I love my job but just wish it were a little closer. Wish us luck!

Lots of love to you all!
The Jensens

Friday, July 21, 2006 8:47 AM CDT

Finally a chance to update everyone on Sydnee's last 3 weeks! On the 28th of June Sydnee went in for surgery at Texas Children's Hospital in Houston. She had to be there at 10am but of course, they didn't start until 1pm. Dr. Stafford went 1st and performed carpal tunnel surgery on both wrists. He thought he may only do the left one b/c of the severity but ended up doing both. The damage wasn't as bad as he had expected and he only had to make 2 small incisions. He wrapped them up for 2 weeks with braces. On the 10th she went back in and had the stitches removed and then had to wear the braces for one more week! Everything is off now and they look great! The scars are actually starting to disapear.

Anyways, after the carpal tunnel surgery Dr. Phillips went in and performed a tendon lengthening on her right leg. They cut the achilles tendon and stretch it. He placed her in a bright pink cast from below her knee to her toes.
Right after that Dr. Phillips worked on her right hip. He did a osteotomy of her femur and pelvic bone. It gets a little technical here, so I will skip all that.
He thought he might have to put her in a body cast (which most Hurler kids have after this surgery) or a brace but when she came out of surgery she was in NOTHING! Wow! She is in a wheelchair for 6 weeks or more but thats better than a body cast. She can not stand at all on that right leg - no pressure on it.
She goes back on the 28th for xrays. The doctor will take off the cast and xray her leg and hip to see how well the bones and tendons have healed. He said he is not sure how well Hurler bones heal so she may need the cast back on and will most likely need to be back in the wheelchair for several more weeks.
Anyways, the surgeries were finally finished about 6:30pm that afternoon and she didn't get into her hospital room until 9pm that night. Needless to say, it was a very LONG day! Sydnee ended up staying in the hospital for 5 days to monitor her pain. A couple of nights it got pretty rough and she had several "Melt-downs" but it is of course better now. Now we are dealing with an ATTITUDE! She is bored and the cast is making her itch like crazy!!!!!
We are hoping that everything will be a whole lot better by Aug. 16th - 1ST DAY OF SCHOOL!
Keep her in your prayers!

Friday, June 23, 2006 7:56 PM CDT

Happy Summer to you all! Hope everyone is happy and healthy!!!

Sydnee graduated from Kindergarten in May and did extremely well. She has really learned a lot this past year. She is even reading! Andrew will start Kindergarten this Fall which is truly hard to believe. We will have to keep you up-to-date on that one.

Our family just got back from the beach which was a much needed break. Both Sydnee and Andrew love the beach and just swimming in general. We were all busy making sure Sydnee had a great week b/c she goes in for surgery next week and will not be able to swim for about 6 weeks! Ughh!!!

Sydnee is having surgery on the 28th of June at Texas Children's Hospital. We have been going around and around with so many issues concerning her upcoming surgery that it is hard to believe that it is almost here. We knew she was going to need a lot of orthopedic surgery in her future but just didn't realize it would start so soon! One more "joy" of having Hurlers!

Anyways, she will be having the following surgeries:
1. Carpal Tunnel - needs it in both hands but the surgeon may only perform the surgery in the left (severe)if he see's that there is a lot of damage. If he only does the left then she will have to have the surgery on the right hand in the near future.
2. Achilles Tendon Lengthening on her right foot
3. Osteotomy on her right hip

After all this, she will have to be in a cast on her right foot, a brace - like contraption for her hip & a wheel chair for approx. 6 weeks. She will also have to wear a brace for the carpal tunnel for 2 weeks.

In case you are wondering, she is scheduled for several proceudres b/c of the high risk of sedation in MPS kids.

Anyways, we hope you all will keep her and her doctor's in your prayers over the next several weeks! She is a brave little girl!

God Bless!
Trisha Jensen and Family

Friday, February 3, 2006 6:31 PM CST

Happy, Happy 2006!!! It has been several months since I have updated Sydnee's website, so I guess it's about time.
Last Fall was pretty busy for our family with our move back to Houston, Sydnee starting school, me finally going back to work (part-time right now) after 5 years, hosting the 4th MPS Run/Walk and attending the National MPS Society Conference in Scottsdale. One thing after another.
Sydnee has done real well with the move. It's great to be back near family and friends!
Sydnee started the 2005-2006 school year off in the 1st grade (agaisnt her parents wishes)and then after her IEP meeting it was back to kindergarten after 6 weeks in 1st. This move has actually been great for her! It has given her an extra year to catch up and work on her reading and writing. She seems to like it better but she still talks about her friends in 1st grade.
We did have a little scare in Jan.. She was sent to the nurses office because she was dizzy and had fallen off of her chair in the lunch room. Then 2 days later she was complaining of a headache (which she nevers does) and threw up in the car. These types of symptoms could mean that the tumors (Epstein Barr Virus she contracted in 2001)in her brain were growing again. We got her in for an MRI of her brain and luckily there were no changes.
Sydnee is also finishing up this month with all of her yearly post-BMT studies. We go to the cardiologist in 2 weeks for an ECHO and EKG and also her neuropsychological study. She has already had her bone age, chest xray, dental check-up and hearing test.
Sydnee still has to go into the bone marrow unit monthly for an infusion (IVIG) for her immune system. It still isn't where it should be.
We just continue to take it one day at a time!
Sydnee's brother Andrew will be 5 this month. He had been in gymnastics the last several months but now it's time for T-ball. He had his 1st practice last night.

FEBRUARY 25TH - NATIONAL MPS DAY!!!!!

Please mark this very important date on your calendar and take a moment to pray for all of the MPS families!

Sunday, August 14, 2005 10:40 AM CDT

Whew! We are all finally moved in to our new home! Kind of strange to be permanently located for once. It sure is nice!

Sydnee started 1st grade last Wednesday. She will be in a regular class and receive speech therapy twice a week. Tehy try to do everything in the classroom. They are going to work on getting her other services also.
She was all ready for school to start but a little shy once we got there though. Her teachers seem really nice. Her co-teacher even has a child with special needs which should be helpful for Sydnee. On Friday she told me that Sydnee and her new friend Anne have already decided that they needed to spend the night at each others homes. I had to explain to Sydnee that it was a little early for that.

I am busy looking for a job. It has been awhile since I have worked. Will be a big adjustment.
Also, trying to get everyone together to plan the MPS Run/Walk we host every year. We are a little behind this year but since this will be our 4th year hopefully it won't be so bad.
Our local run/walk - "MPS Run, Walk and Roll to Cure Our Kids" - will be held on Saturday, October 22nd at Bear Creek Park in Houston. You all are invited!

Our new information:
21722 May Apple Ct.
Cypress, TX 77433
#281-304-7363
Have a wonderful 1st month of school!
Sincerely,
The Jensen Family

Friday, July 22, 2005 9:00 AM CDT

Well, we have finally done it! We made the Big Move back to the Houston area! Yeah! We are closing on a new house this afternoon and moving in tomorrow. Just in time for Sydnee to start school - Aug. 10th.
Robb got the head baseball job in Waller - West of Houston and he will be teaching Geometry. We are all excited about the move. The majority of our friends and family live around the Houston area, not to mention Texas Children's Hospital is here.
Kids are good! Been doing a lot of driving this summer and trips to the beach. Went with family to S. Padre Island for a week at the end of May and then to Galveston several times. The kids love the water!
Not a lot else to update right now!
Hope everyone is having a great summer!
The Jensens

Tuesday, May 3, 2005 10:17 AM CDT

Last weekend was a big-to-do for our little Angel! Sydnee had her 1st dance recital on Saturday night! Mom was a nervous wreck but Daddy handled it very well. Several friends and family from Houston drove up to see her perform.
To get her ready we rolled her hair in curlers and put makeup on her! She is in to makeup right now. Cute!!!

Sydnee wasn't nervous at all! After her 1st performance - Hula Dance - she told me as she was walking off the stage, "I did good!" hahaha!!!
After the Hula dance they performed a tap routine to "Surf'in USA". They had on cute little yellow and black polka dot bikinis with tutus! Her last dance was a fairy ballet. They all looked adorable!
I was so worried about her matching up to the other girls but she did great! There were some moves that were a little harder for her but she didn't care! Guess mom needs to stop worrying so much!

Her dance instructor Lori, gave all the girls dolls with fairy ballet costumes on - just like what they had on.
At the end they all got to onstage and receive trophys. Sydnee also got a beautiful bouqet of flowers from her little brother. Didn't think she'd be real thrilled with the flowers but she loved them. She had to show them to everyone!

Other than that, everything is going well. She has a couple of doctor appointments in a couple of weeks but nothing major. Only 3 more weeks of school and then summer!

We will be moving again this summer but not sure where. Will keep everyone up-to-date on that.
Keep us in your prayers!
God Bless!
The Jensens

Tuesday, January 18, 2005 5:00 PM CST

Well, all the craziness of the Holidays is finally over. We all had a great 5 days at Disney. The 4 of us were able to attend The National MPS Society's Family Conference in Orlando in Dec.. We actually drove to Florida but we had friends to follow which made it a whole lot easier. David and Brenda Marches and their 2 kids went with us, so the kids spent the drive watching movies and playing with eachother. Not a lot of brother and sister fights! My parents, Len and Linda Terrien, my brother-n-law Tyler and his family (Rachel and their 2 kids), and another brother-n-law (Shane) who also lives there joined us at Disney. The 1st day was spend at Epcot where all the girls including our MPS friends, Kym and Maddy, all had brunch with the princesses! That was a real hoot! Sydnee and Maddy were so funny to watch! They loved it! Spent the rest of the day riding rides and watching shows. For the record, Sydnee HATED all of the 3-D Shows. Every time we would walk into the theatre she would tell us she had to go to the bathroom. That was just her ploy to get OUT!!! The next 3 days were spent at Magic Kingdom (my favorite), Animal Kingdom and MGM Studios (which was also very cool). We do regret not participating in as much of the conference as we would have liked. I hated to make the kids go back to the hotel at the end of the day when there was so much more to do at Disney. We had to see the Fireworks Shows, right? We did attend the break-out session where all the Hurler families get together and talk. That is always the most beneficial to me. I also attended a session on "The Unaffected Sibling" and of course, the Awards Banquet on Sunday evening. My dad did go to several of the sessions for us, so we got all the updates. A lot of the topics were the same as last year. I would have liked to meet more families but that will have to wait till next year.
I always enjoy spending time with the Wigglesworths from N. Carolina. We have a lot in common and our girls love eachother!
The rest of the holidays were spent driving from one families house to another. Way too many miles on our car this year! Next year we have decided to just stay home and let the kids enjoy their new toys for awhile. Not so much rushing around! And of course we were way more tired than they were.
Working on our Disney Scrapbook for those of you interested! Lots of really cute pictures, especially the one of my husband and his buddy, David with "Princess Ariel"!!!!! That made their day!

Wednesday, November 3, 2004 10:22 PM CST

Whew! It is finally over and done! This years MPS run/walk was this past Saturday and it turned out to be a great day! We were a little worried about the weather but the sun came out - hot, hot, hot!!!!
It went SOOOOOO smoothly this year! I was very surprised! Everyone really enjoyed themselves! And we hopefully raised A LOT OF MONEY for research. Not sure on the total's this year. Hopefully we will have an idea by this weekend. Will keep you all informed.
Anyways, the best part of the day was meeting all of the MPS families that particpated this year. There were several families in attendance whose children are in the ERT trial for Hunters Syndrome here in Houston. They came from all over the country.
The awards ceremony was truly a touching experience! I wish you all could have been there for that. Every year I feel so blessed that we can be a part of this event and help in whatever way we can! Even though there is a lot of stress involved,not to mention the work, it is well worth it. I just have to look at Sydnee and smile through it all!
Thank you to all of our friends and family that made donations and/or took time out to volunteer or participate! We could never make this work without everyone's support and prayers! Get ready for 2005! Here we come!

But for now, it's time to gear up for our big trip in December! This year's National MPS Society Family Conference is being held in Florida at Disney World. We can't wait! It is being held from the 16th-19th. The 4 of us are going along with my dad and Linda and our good friends from Houston. It should be a great time! I have never been and neither have the kiddos. Will take a lot of pictures!
By the way, for those of you who were wondering, Sydnee's surgery in October was HORRIBLE!!!!! That actual surgery went well but afterwards - YUCK!!!! I thought she would bounce back so easy after all that she has been through in the last 5 years but NO!!!! The surgery was on Friday and she spent the night at the hospital. They wouldn't let her leave on Saturday until she drank 8 oz. of juice. A lot easier said than done! We had to hold her down and give it to her with a syringe. This continued throughout the next week. She refused to drink and eat! On Monday and Tuesday we ended up taking her back to the hospital to receive an infusion for fluids. They were worried about dehydration, not to mention she looked awful, got a rash on her torso, had diarrhea, and started vomiting on Sunday. If it ain't one thing it's another!
On Wednesday I braved it and drove the kids to our Home 3 hours away. The next couple of days did not really improve at all. So, on Friday morning I had the car packed ready to drive back to Houston and she just started drinking. She grabbed a bottle of water and asked me to open it and that was that! Crazy!!!
Anyways, now she won't stop eating and she's got her tummy back!

By for now!

Wednesday, September 8, 2004 12:43 AM CDT

Hello everyone! This will probably be the last update until after the run in October! It just gets way too crazy around here! Will let you know how Sydnee's surgery goes in October (15th) - tonsils & adnoids removed & tubes placed in both ears. Please, keep her in your prayers. The anesthesia always worries us a little with her "Hurler airway."
As for the run, we hope many of you can attend the event. It is truly a great experience! It gives you warm fuzzies all over!
RUN INFORMATION:

MPS RUN, WALK AND ROLL TO CURE OUR KIDS
SATURDAY, OCTOBER 30TH - BEAR CREEK PARK - PAVILION 6
FOR MORE INFORMATION OR TO REGISTER:
http://houston.mpsrun.org

Anyways, the kids are doing great! Sydnee loves kindergarten! She seems to be adjusting really well. It's all day but they take a nap after lunch. She still receives physical, occupational and speech therapy from the school and through insurance. Last month she started dance class (Grandma & Papa Sims b-day present to her). She has already had 3 lessons with Ms. Lori her instructor. It's ballet and tap! She is a hoot to watch! She has some balance issues with most of the moves but she is probably the most enthusiastic dancer you've ever seen! In November, her class (4, 5, & 6 year olds)performs in Crockett for their Christmas celebration parade. We didn't attend last year, so this will be an interesting experience. Hippotherapy (horseback riding therapy) starts again next week. They take a break over the summer months because of the heat! She is scheduled to go every Sat. afternoon. She seems to be looking forward to that. Sydnee (and family) also has a big day coming up this month:

SEPTEMBER 15TH - IT'S HER 4 YEAR POST-TRANSPLANT ANNIVERSARY! IT'S A BIG DAY FOR US TO THANK HER DONOR, ANDY AND OF COURSE THE LORD FOR GIVING HER A SECOND CHANCE! IT IS SO HARD TO REMEMBER ALL THAT SHE HAS BEEN THROUGH. IT FEELS LIKE THIS ALL HAPPENED LAST WEEK. WHAT AN ANGEL WE HAVE!
PLEASE CONTINUE TO PRAY FOR SYDNEE'S HEALTH AND FOR A CURE FOR MPS!

Both the kids began AWANA's at the Baptist church here. They sing, play, do crafts and learn about God. Andrew was so thrilled to actually have something to join for once! He is also going to be playing soccer this Fall. His team is the "Rockets"! Practice starts this week but we will be in Houston for Sydnee's monthly infusion at Texas Children's Hospital. He will have to wait until next week - we just won't tell him yet!

Robb's football season is in full swing now! They have actually won their 1st 2 games! It would be nice to have a winning season for once! Go Sandies!!!!

Our family is looking forward to December. We are driving to Florida for the National MPS Family Conference at Disney! I have never been and neither have the kiddos. We can't wait. We will be there for 4 nights and then we will probably drive to Alabama to visit family before Christmas.

All for now! Have a great next couple of months!
See you at the run!

The Jensen Family - Robb, Trisha, Sydnee, Andrew & of course, Molly

Sunday, August 1, 2004 10:47 PM CDT

Finally, getting a chance to write a few lines. Can't believe this summer has gone by so quickly. Sydnee starts kindergarten in a couple of days. I know she has been in school (PPCD & PRE-K) the last 2 years but this is different. It's such a big step! I am going to be a nervous wreck!
Anyways,we have had a lot of doctor's appointments over the summer months and more to come. I am trying to get them out of the way before school starts up again this month.
In June she had her regular (every 6 months now) MRI and everything looks the same, which is good. She also had her vision tested which was good considering.... There was also a trip to her GI doctor and endocrinologist. Both of them brought up the subject of Sydnee taking the Human Growth Hormone or HGH. They said that from their measurements she hasn't grown in the past year. I am not real sure that I agree with that. We've had many friends tell us how much she has grown since they saw her last. Luckily, the endocrinologist decided after some more tests this past month that we should wait another 6 months and see how she does. Fine with me.
Last week we went to the orthopedic. She took a lot of x-rays and she seems to be doing fine. Her knees look a tiny bit more knock-kneed but that is to be expected. I asked her about Sydnee taking HGH and she gave me a BIG NO!!! She showed me Sydnee's x-rays of her legs which show that she had indeed grown from last year. She measured them out and compared them from last year's x-rays. See, I knew she had grown atleast a little. I've seen a lot of kids her age that are as short as she is and do not have MPS. I guess we will just have to wait and see.
We also went to the ENT last week. Sydnee has been trying to fight off a nasty ear infection for the last couple of months. This is the 1st ear infection she has had since she turned one and got tubes placed. So, now we have scheduled surgery for October to have tubes placed in both ears and her adnoides removed. They may also take her tonsils. Just depends on what they find when they go in.
We've also been busy planning the run for this year! It's been a little crazy so far. A couple of families took a breather this year and another family is having some health concerns that they need to deal with right now. Anyways, I truly hope it all turns out ok. The last 2 years have been really great for all the families and their kids, not to mention the National MPS Society.
Hope all of you can make it if you live in the area. It will bring a big smile to your face!
Have to get to bed! Hope everyone is having a great summer!
The Jensen Family

Friday, May 28, 2004 10:57 AM CDT

Just a little update for everyone!
The big news is that Sydnee is now officially in Kindergarten! They had their graduation from Pre-K yesterday morning. She got to walk up and shake the principal's hand and receive her award for completion! She was so cute! Hard to imagine that she will start "real" school in the Fall! She thinks she is such a big girl! ha-ha!!! She also lost her 3rd tooth the other day and the "Tooth Fairy" left her a whole dollar under her pillow! She thought that was the coolest!!!!
We are all ready for summer, especially Robb. He is still looking for that perfect baseball job!
Sydnee only has a couple more Hippotherapy sessions left until the Fall. It gets a little too hot here to continue during the summer. I know she will miss it!
She will still receive speech and occupational therapy over the summer through the school district, which is good news. In June she has 5 doctor's appointments scheduled. The big one is another MRI of the brain to check on her lesions. It's just to make sure there has been no changes.
In case you are all wondering, we do have some fun things planned. We are using a friends time-share down in Galveston for a week. The kids love the beach! We also have relatives visitng from Minnesota. So much to do and so little time!!!!!
Wishing you all a wonderful and safe summer!
Love,
The Jensen's

Wednesday, April 28, 2004 9:06 AM CDT

Sydnee enjoyed her 5th Birthday at the end of March. We had her party at home in the backyard with friends and family. We rented a moonwalk, had a pinata and a clown - circus theme! The kids had lots of fun!
Hard to imagine she is already 5 years old. Can you believe that in September it will be 4 years since her BMT? WOW!
Last month we once again tried to take her off of her monthly infusion - IVIG, but no luck. Her immune system is still not where it should be, so back to the drawing board. We are hoping that this will not turn out to be a life-long infusion.
She also had her hearing test in March but it will have to be re-done because she had an ear infection and the readings were not correct.
Everthing else seems to be going well. Her speech has really improved this year and we are still working with her on trying to ride a bike. The physical therapist is trying to increase the muscles in her legs.
She still enjoys her HIPPOtherapy once a week and we are hoping to get her in some type of dance class this fall. She loves singing and dancing!
Just a reminder that we are once again planning a MPS Fun Run this year. So, mark the date on your calendar - Saturday, October the 30th. We'd love for you all to come!

Best wishes to you all and thank you for your continued support and prayers.
God Bless you and your families!
The Jensens

Tuesday, March 2, 2004 1:13 PM CST

Just a quick note to let everyone know how we are all doing in the big old town of Grapeland! Baseball season is in full swing and Robb's team is doing pretty well! Yeah!!! Haven't started district games yet, so we will see.
Andrew just celebrated his 3rd birthday in Feb.. We had a big party for him in Houston at Chuck E Cheese. It was a little much for all of the adults but the kids had a great time! Now we have to get ready for Sydnee's 5th birthday in March. We are planning on having her party at our house in Grapeland, so she can invite her friends from school.
As for me, same old same old. I did just recently start a bible study with some other stay-at-home mom's. We are meeting twice per month. It has been nice to meet some other women my age.
Sydnee has had several of her yearly appointments in the past couple of months. In December she had an MRI of the brain. It is a routine exam to check the status of those lesions in her brain. They are still the same. No change and there probably never will be but we have to monitor them. We just don't want them to start growing again and multiplying. They have now decided that she can cut back to having MRI's every 6 months (it was every 4 mos.).
She also had her yearly Neuropsychological testing done in Dec.. It actually went a lot better than last year. She is still developmentally behind other children her age but she has made much progress in the past year. The doctor seemed pleased! Sydnee also had a chest x-ray, a bone age test, an ECHO cardiogram, and an EKG. Everything was normal - atleast for a Hurler's kiddo. And for some exciting news (atleast for her), Sydnee lost her 2 bottom, front teeth in February and the tooth fairy paid us a visit. I was a little worried at first because she is young for losing teeth but the dentist reassured us everything is fine. She actually has 2 more growing in their place. Last week we went to the orthopedic. They took some x-rays of her hips and legs. We have to keep watching this closely but everything seemed to look good. Not much change in the last 2 years. The doctor did decide to get rid of Sydnee's AFO's (braces) - Yeah!!!! They do not seem to help much. We will go back to her in 6 more months. Next time she will do some x-rays of her spine. Haven't had that done in awhile - very important! In the next couple of months she has a vision and hearing screening, so we will keep you up-to-date on those.
Sydnee still goes to Texas Children's Hospital once a month for her IVIG infusion - helps boost her immune system. She actually enjoys seeing Dr. Krance and the nurses. Crazy girl!!!
For those of you who don't know yet, we enrolled Sydnee in a HIPPOtherapy (horseback riding) program in Palestine (about 20 miles away). It started last month but she has only been able to go twice because of all the rain we have had lately. It is suppose to be once per week, so we have some catching up to do. So far, she seems to love it! We also still take her twice a week to a Physical Therapist in Crockett (13 miles away). They are working on stretching her legs and fingers and strengthening her leg muscles.
We also started her in an AWANAS program at the Baptist Church in town. It is Wednesday nights for a couple of hours. They play games and learn Bible verses. Of course she loves that too!
We are hoping to enroll her in some kind of dance class after everything calms down a little - maybe this summer!
Hope this caught everyone up-to-date on the life of the Jensen's - mainly Sydnee!
Take care!

Tuesday, November 18, 2003 5:17 PM CST

Just wanted to add a quick note about the Fun Run that we hosted on Nov. 1st! We had a great turn-out and it didn't even rain! A little worried about that.
About 350+ attended and we raised over $80,000 so far for the National MPS Society! Not bad! We had a couple bugs with our scoring system (computerized) but overall a huge success!
A big thanks to all of our family and friends that were there and/or donated money! We couldn't have done it without your support and of course, your prayers.

Anyways, we are all doing good. We all did have a bought of the flu but better now. A little worried about Sydnee at first but after driving into Texas Children's in Houston we felt better. They gave her an infusion and she felt better by the time we left there.

All for now!

Thursday, October 23, 2003 7:49 AM CDT

Just wanted to update everyone on where we are now. I finally made some adjustments to Sydnee's web site but not a lot. Haven't had a lot of time! For those of you who don't know our family is involved in a Fun Run to raise money for research and to bring awareness to MPS. This is our 2nd year hosting it (last year we raised over $70,000) and it is now only 1 week away. There are 8 area families involved who all have children affected with one of the forms of MPS. It has been a very rewarding event in our lives. We have met some truly remarkable parents, not to mention the friends that we have made. Our main motive for being involved in this is in the hopes of finding a cure, so that other families will not have to endure the pain and suffering that Sydnee has gone through in her 4 years. If you would like more info. on the run our web site is: http://houston.mpsrun.org

Anyways, on to Sydnee. She is doing very well. She now attends a regular Pre-K class all week from 7:45-10:45 am. Two days a week she goes to a "Life Skills" class in the pm until 3 pm. In this class she receives all her therapy - speech, physical, & occupational. They also work on "Life Skills" like dressing yourself, potty traning, tying your shoes, riding a bike... She absolutely loves school! She even has a little boy in her class that she talks about all the time - James! Next time you see her, be sure to ask her about him or her teacher, Mrs. Franklin.

Last week we were in Houston for Sydnee's doctor appointment at Texas Children's Hospital. They did some blood work to check her immunoglobulins. They are trying to decide if her immune system is ready to begin her immunization schedule. When she received chemotherapy for her BMT, it wiped out all of her previous immunizations from birth. So, now she will have to receive them all over again once her system is ready. Next month they will start all her yearly studies - blood work to check her enzyme level and donor cells (make sure she is still 100% donor), EKG, ECHO, MRI of the brain, neuropsychological testing, hearing, vision, dentist.... On and on and on! Anyways, will keep you all up-to-date on those.
Have to go for now. Think I hear Andrew waking up!
Have a great Halloween!

Friday, September 26, 2003 10:50 PM CDT

O.K. I am going to try this out again. 3 years ago when Sydnee was 1st diagnosed my brother-n-law (computer wiz) set up a web site for Sydnee. About 6 mos. after the transplant - that was it! I tried about a year ago to start another one but... So, here we are again. I really enjoy reading other families stories about their MPS children, so I am hoping Sydnee's web site will give some information and some HOPE to other MPS families. I will go back in time and give you the details of "our life with MPS" ASAP! Please check back for additional updates.

Friday, September 26, 2003 10:50 PM CDT

Click here to go back to the main page.

----End of History----


Privacy Policy \| Sponsorship/Donations \| About Us \| Contact Us \| FAQs
Copyright � 1997-2003 CaringBridge Nonprofit Organization, All rights reserved.