Lois Kathleen Sampson

Born: May 4, 2001 

Update 5-25-09

Lois turned 8 years old on May 4, 2009! She is basically healthy and very happy! We see ongoing smiles and laughter! Still no word on future palate surgeries as her first 3 were unsuccessful but we do have a removable appliance for her palate--which she can often remove herself-unfortunately! Her craniofacial specialist says that we can start giving her water orally soon. She's had some viruses, etc. but her last hospitalization was in January 2008.

She continues to use a walker more and more at school and prefers walking outside in the sunshine. Her classroom door is kept closed as she has tried to exit the room (without permission, of course!) via her walker and crawling. She receives OT,PT, Vision, Hearing, and Orientation Mobility Therapy at school. She'll also attend summer school. She is also opening and closing her bedroom door at home. Attached are some photos of her adventures. We went to Glacier Park in Montana as well as Canada last summer. Lois is a good traveler and has been in 25 states, Canada, and on a Disney Cruise in 2006. The cruise was from Make-A-Wish. Our tri kids qualify for Make-A-Wish--contact www.makeawish.org or me for information as I volunteer for them now, as per the attached article which appeared on Make-A-Wish's national website in 2008. The rides are at the 2009 Florida State Fair on one her field trips. Lois loves motion and being on the go!

We attended the annual NICU reunion from the hospital of her birth. The doctors are amazed at her continual progress. They took photos of all the kids in attendance which may go on a calendar next year! We moved into a different house a year ago which provides her with a longer hallway and more crawl space! Lois' next big adventure will be to be a flower girl (again!)in November 2009 in Colorado. She was a flower girl in her maternal cousin Meredith's wedding in 2007 and will do likewise for Meredith's brother, Jared, this coming November. They've been awesome cousins to Lois! She will be wheeled down the aisle in her KidCart by her awesome maternal Uncle Wally as she was in her Cousin Meredith's wedding, unless she's making major strides in her walker by then!


She continues to bring us great joy and keep us busy! We encourage anyone to contact us and for all of us to keep praying and fighting together for miracles and cures for all of our VERY BRAVE children! We're in the Tampa, Fl. area. God Bless you all & a special praise of thanks to Therese for maintaining this website and fabulous means of support and education!

Brad & Cindy Sampson bscs115@hotmail.com
P.S.--If you e-mail us, please remember to list trisomy in the subject line so that we don't delete it!
 

 

Update 9-27-06
Hi
Sorry for the long delay in sending an update.  Lois has doing great.  She continues to be a very very happy little girl that fills our home with joy.

In the past 11 months she has been sick a few times but has been able to get better on just Tylenol/Motrin and breathing treatments.  She is continuing to learn how to use a walker and has now become Houdini.  Since June she has been crawling up onto and off of the furniture and anything else she comes to and has been getting past barriers to keep her in her bed.  If she is awake, then she is on the move.  She loves to climb up into the rocker/glider and then hang off the sides of it or play with the vertical blinds behind it.

Lois has grown a little taller, now at about 3' 3".  She still has not gained any weight, still at 29 1/2 lbs.(maybe due to Zonegran).  Lois has been seizure free for 1 year. Her cleft in her skull has almost completely closed up.  She does still have the cleft palate.  She lost 4 baby teeth in July, and 3 new ones have already came in to
replace them.

Due to the risk versus benefits,  she will not have the white film removed that has formed behind her new lens in her rt eye.  Because she has to be sedated, actual scalpel surgery would be required to remove it as opposed to laser surgery.

Her kidneys are no longer retaining any excess water, but there may be some precursors to kidney stones (if there, maybe due to Zonegran).  She gets another ultrasound in 5 months.

Currently she routinely is only on 2 rx's.  Zonegran for seizures which is being reduced, and Pulmicort breathing treatments for preventive lung

She has been busy this past year.  Still attending Lopez Exceptional Center for about 5 hrs a day.  She had 3 months of physical and occupational therapy at a local therapy center and is currently getting speech/mouth/communication therapy.

She had a blast at the FL State Fair riding the rides, watching the parade and watching the teams to horses competing.
She celebrated her 5th birthday at Daytona Beach and enjoyed the water.

She traveled about 7,000 miles this past summer going as far as Idaho, visited 11 sets of family groups and friends, rode an antique Merry-Go-Round, toured 2 state universities, conquered Old Faithful and Yellowstone, gazed upon Mt Rushmore, saw Chicago from the top of a gigantic ferris wheel, played in the Great Smoky Mountains, and touched 22 state
lines.

AND now Make-A-Wish is sending Lois on a Disney Cruise leaving Saturday, and she is going to take her parents along for the ride.  We are very blessed and grateful for this opportunity.

God is continuing to bless our family and to touch Lois' life.  And she continues to be a source of joy with whomever she comes into contact with.  Thanks again for your continued thoughts and prayers.

God is still good all the time.

Love,
Brad, Cindy, & Lois

Lois 4 1/2 years old

Update February 2006 This was 11/11/05, at Disney World.  Lois was 4 1/2 years old.  She had a great time; hugging/kissing characters and loving the rides.  She is crawling and pulling up to everything.  She even gets to the front door, her hand on the knob, and is ready to go out!

Update October 18, 2005
Lois continues to progress. She loves to pull up to stand and then to side step along things. She still loves to mouth everything but only wants to have something in her mouth about 80% of the time.

She recently enjoyed going to a church carnival where she bounced in a moonwalk,gathered plastic ducks out of a tub of water and actually sat still long enough to have a heart painted on her face. She met Geoffrey the Giraffe at Toys R Us on Oct. 1st. She spent Oct.13-16th in Orlando with her parents and Auntie Heidi(Cindy`s friend). Lois went to Universal Studios 2 days in a row and loved going on the rides! E.T., Woody Woodpecker`s roller coaster, and Back to the Future, to name a few. She also got to meet many characters; such as Scooby Doo, Curious George, Dora the Explorer, the Flinstones and the Rubbles.Of course, she also went swimming in the hotel pool, enjoying kicking her legs in the water.

Overall she has good health and has been off of Singulair for about a month. Her seizures still happen off and on with the last one being 3 weeks ago. Her kidneys are doing good with still just very mild water retention in one of them. She got an impression for an intraoral plate (plastic palate) a couple of weeks ago.

She is scheduled for gall bladder surgery tomorrow Oct 19th at 8:45am at St Jo's. We had been putting it off for about 2 years, but now she has the stones and sludge and a 2nd specialist recommended having it removed. It is better to have a scheduled surgery than emergency surgery with additional possible complications. Dr. Coughlin will first try to do it laproscopic, but if there is too much scar tissue from previous surgeries then he will do it the old fashion way. We appreciate your prayers.  

Brad, Cindy, & Lois 4 1/2 yrs old

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Update July 2005
Lois continues to do great even though a very quick 3 day hospital stay related to a near pneumonia. She responded quickly to the antibiotics and was walking all around the inside of the hospital crib.

The small part of the palate is still holding. Her Dr wants her to get a removable plate for the time being and wait till she gets older for another surgery attempt.

We are now almost to 11 weeks since we have observed a seizure.

Lois has been extremely active and happy no matter where she has been. Took her to see her Grandma Velva in Indiana and then to the Smoky Mountains and saw a Bluegrass Festival. Had to cut N.C. vacation short with the unexpected passing of Grandma Velva, Cindy's mother.

Lois did great with all the traveling though she did start back on Antibiotics for persistent fever and a cough. She had great fun playing with her cousins and other family members.

Update 4-6-05
Lois saw Dr Habal again today. Only a small section of the back of the palate held thus making the palate about twice as deep as before the surgery. All of the rest of the palate reopened due to her tongue thrusting. The possibility of future surgeries is unclear.

Otherwise Lois is doing great. She is now crawling on her own for at least five feet. She is also side stepping along the entertainment center and stepping up onto anything in her way. She is now standing about a third of her awake time. Her strength and balance continue to increase.

Over the past year we have been dealing with seizures that were occurring 2 to 4 over a 36 hr period with 4 to 7 days between periods. The last few months with a new med, the seizures have dropped to 1 to 2 with 7 weeks between periods.

With the change in seizure meds, Lois became much more active and sleep about 2 hrs less each day. With the more activity and other issues, she went from 34 lbs down to 29 lbs. With an increase in her meals, she now weighs about 31 lbs and is 3 ft 1 7/8 inches tall.

Her kidneys continue to do fine with just minor water retention.

Her blood levels continue to be fine.

Her cleft in her skull continues to grow together as it should.

She still has at least 1 gall stone and still eats through a g-tube.

Her heart continues to be perfect.

Her right eye continues to do fine except for a white tissue that will have to be removed when it becomes too thick behind the new lens. She sees the specialist in 2 weeks.

This past year has been a busy one for her. She waded in the ocean and kicked her legs in the pool at Ormond Beach in June for a late B-day celebration. She saw a Dr. Seuss puppet show with her mom. She's been shopping with Mom at local stores, cruising in shopping carts. She took another long trip to Indiana and North Carolina this summer where she hiked up to several waterfalls.

In August, she started preschool. She goes from about 10am to 3pm. She has about a 50% attendance record. In Oct, she took a trip to Pompano Beach and Palm Beach where she enjoyed the ocean and the pool once again.

She has met Winnie the Pooh. And she spent time with Santa on 3 different occasions this past December. Around Christmas she waded in 2 ft of snow in Indiana and met Grandpa snowman. She also did her first complete crawl while in Indiana.

This year she has been bowling in Brandon and roaming around the Strawberry Festival in Plant City. And of course had surgery at University Community Hospital. She also said hi to the Easter Bunny and went on an Easter Egg Hunt with Mommy.

She continues to be the joy of our lives and is overall a very happy child who is on the go. We look forward to her 4th Birthday in less
than a month. God continues to be faithful even though we don't understand it all.

Thanks again for all your thoughts and prayers.
Brad, Cindy, & Lois
 

2-10-05
Lois update, Please keep her in your prayers. Lois came thru surgery fine. She is still being watched in Pedi ICU and is now off all oxygen. Today she finally is near to her normal. She was trying pull up to stand in the bed, but the arm splints and iv makes it difficult. She appears to have no pain at this time. Thanks again for your prayers and thoughts. Brad, Cindy, & Lois

2-13-05
We came home today. Lois is acting fine except for the gas pains from the side effects of antibiotics. She continues to pull up to standing and trying to crawl over everything. We now are in the waiting game. It continues to be in God's hands as to success. Praying that the palate holds and grows together.
Thanks again for your prayers and thoughts.
Brad, Cindy, & Lois