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Caroline

Things We Are Doing with Caroline

Early Intervention and Therapy

Caroline began her early intervention around 7 weeks of age.  At 6 months she began 30 minutes each of speech therapy, occupational therapy and physical therapy per week.  I remember thinking “what in the world does a 6 month old do in speech therapy and occupational therapy?”

In Caroline’s case she has issues with the muscles of her mouth and tongue.  This problem is very common with Down Syndrome.  Originally speech therapy centered around oral motor exercises that she did at therapy and that we then followed up on at home.  These days we work on facial exercises, sign language, speech and cognitive functions.

In the early days it was often hard for me to distinguish between her occupational therapies and the physical therapies.  To my untrained eye I would describe the early occupational therapies as fine motor skills and the physical as gross motor skills.  As she aged, the differences became more apparent.  The OT would work on things like feeding skills while the PT would work on crawling, then walking.  Today the OT works on writing and the PT works on things like hopping and skipping.

These days Caroline has 2 hours of each type of therapy.  They are broken down into one hour sessions of each type for three days of the week.  It may sound like a lot of effort, but it’s like any other routine, once you get in the habit of doing it, it doesn’t seem like that much.  We take her to therapy less often than my best friend takes her son to football practices and games. 
I can’t stress enough how important we think the early intervention and therapies have been for Caroline.  Most of the experts who see Caroline feel the same way too.

School

Caroline started special ed through our public school system shortly after her third birthday.  My initial fears about where she would attend school were so misplaced.  She had the best teachers and they fostered such an incredible atmosphere.  She used to ride the bus to school every day.

Last year she began in the "mainstream" Kindergarten alongside her other five-year old peers. With the exception of the times she was in therapy (occupational, speech, and physical), she spent most of her day interacting with her friends and learning everything every other Kindergarten child is supposed to learn. She thrived in that atmosphere, she was happy, and her classmates interacted with her like she was one of their own- because she was. Were some minor modifications made because of her situation? Yes, like the stool that was made so she could reach the "normal" sized toilet, and the hearing aids she wears daily, but otherwise, we have been reassured that she was very independent and very motivated. When you have those two things going for you, a lot of the challenges can be overcome with practice and persistence.

At the end of the last school year, we faced a difficult choice – what to do with Caroline for 2010-2011.  Caroline had such amazing success last year but, long term, we had a goal of putting her in the same private school with her sisters.  To say we agonized over the decision would be an understatement.  We asked the opinion of all her teachers, therapists and doctors.  In the end, we decided to move her to the new school and mainstream her 100% of the time.  As I write this update, Caroline has only been in the new school for two weeks.  So far, we are very pleased as are her teachers.  Once again, no one knows what the future will bring.  I just have to trust in God that we made the right decision.

Special Clinics and Doctors

The Medical University of South Carolina in Charleston has established a special clinic for Down Syndrome that utilizes the expertise of a number of individuals.

Since individuals with Down Syndrome often have issues with hearing and sight, we also see several specialists in this area.  We see a pediatric ophthalmologist at the Storm Eye Institute at MUSC.  His name is Dr. Richard Saunders.  We love him.

Also high on our list is Dr. Ted Meyer and Kimberly Snyder both of MUSC.  Dr.  Meyer is an Ear, Nose and Throat specialist that focuses on ears.  Prior to Caroline, I had no idea that you could be more specialized than “ENT.”  Caroline, like many children with Down Syndrome, has very small ear canals.  This small size affects her hearing.  That is where Kimberly Snyder comes in, she is an audiologist.  As Caroline has grown, so have her ear canals and her hearing has improved.

Knowing where your child stands for both eye sight and hearing is so important.  That information told us what we were up against with Caroline.  We were able to get remedies that allowed these two issues not to effect her development dramatically.

Hope Haven is a clinic in Jacksonville, FL that has been a God send.  While the clinic at MUSC is new, Hope Haven is not.  The director has a son with Down Syndrome.  All they do every day is work with individuals with Down Syndrome.  When Caroline was 16 months old she was still struggling to walk.  Five minutes into a session with one of their physical therapists, they had her taking her first independent steps while using “Hip Helpers.”  (see links page for more info.) 

We have been going to the clinic every 6 months.  They assess her on all therapy levels – OT, PT and ST.  We also meet with an educational consultant.  Several weeks after our visit we receive a detailed report which we share with our therapists and use as our personal marching orders.  The information has been invaluable.  

“Helmet Head”

Who knew this phrase would come to mean more to me than just a bad hair day?  Caroline, because of the muscle weakness associated with Down Syndrome, tended to sleep in one position every night.  As a result she developed a significant flattening of the skull on one side.  We met with a specialist and she was fitted for a helmet that reshaped her head.  It looked bulky, but it never really bothered her. 

If you suspect your infant has this problem, you might need to be a little pushy about it.  I had some people tell me to just position her head differently when I put her down and that would solve the problem.  When I finally pushed enough and was referred to an expert, he told me I was lucky I came in when I did as it was definitely a problem and we were just barely still within the growth window of time allowed to fix it.

“Small Stature”

Children with Down Syndrome are small.  Caroline is smaller than most children with Down Syndrome.  She is off the chart (even the one corrected for Down Syndrome) small.  We are seeing a pediatric endocrinologist (Dr. Bowlby) and a pediatric gastroenterologist (Dr. Pillai) at MUSC to determine if there might be a problem.  Since the initiation of our journey through resolving this issue, Caroline has been placed on the medication Increlex and is growing more rapidly than before, but still not a rate to allow her to come anywhere near to catching up with her peers.

After many conversations with Dr. Bowlby, we decided to try a new drug regime of Increlex and human growth hormone.  The chances of the insurance company approving us for this new drug protocol were very slim.  Both Increlex and human growth hormone (HGH) are very expensive drugs and Caroline doesn’t qualify for the HGH by traditional standards.  Thanks to Dr. Bowlby’s persuasive arguments and my inability to take “no” for an answer, we were eventually approved.

Today Caroline takes 2 injections.  The Increlex is taken with breakfast and the HGH is taken at bedtime.  One of the great advantages of this new regimen is that the side effects of one of the drugs counteract the side effects of the other.  The greatest advantage of the program is that, at her first measurement since starting the new drug, her growth rate doubled.  In October when I take her back again, I am hoping that it will have tripled!

Like much of our experience - staying informed, searching for more information, sharing information, and monitoring the situation for progress are paramount to success. Then of course, there are the celebrations when progress occurs (that's the good stuff).

“Hap Caps”

This entry will probably the most controversial for some people reading our web page.  Hap Caps are a supplement designed specifically for people with Down Syndrome.  I remember asking one of Caroline’s doctors early on what he thought of the idea.  He said that there are lots of non-traditional things in medicine that were currently being tried with some results.  I asked him if he thought they might harm her in any way.  He looked at the bottle and said “no.”

We feel that if it doesn’t hurt her, and there are those that claim that it has really helped someone they care about, why not try it?  Is Caroline’s success so far attributable solely to “Hap Caps?”  I doubt it.  Could it be a part of it, maybe?

Ballet and Sports

We considered the impact of entering Caroline into ballet classes given her stature and her issues with strength and balance. Ultimately we decided to give her the opportunity and the results have been amazing.  She loves the experience and it has helped with the strength and balance issues that concerned us in the first place.  Since her two sisters are also in ballet, they share a bond over something very special in their lives, and it is heartwarming to see them dancing together around the house, pretending they are performing "The Nutcracker" or some other ballet.

Likewise, we decided we wanted Caroline to have swimming lessons, not just because living on an Island means you probably should learn how to swim, but because the exercise would be good for her.  When someone doesn't quite understand what Caroline can and can't do, we tend to get some polite and good natured questions about the situation. It was not long before Caroline won over everyone and, by her second lesson, she was like Norm walking into Cheers when she arrived at the pool.  But it's pretty much like that at school, at therapy, the grocery store or anywhere else we go.  Just the other day we ran into the facilities manager for her new school and his wife.  He informed me that Caroline was his new girlfriend and she calls him by his first name.  I said that wasn’t appropriate and that he should make her address him properly.  His wife responded by saying he would never do that as it would break his heart.  I’ve decided she knows more people on Hilton Head than I do.

Our next adventure: soccer. Caroline played youth soccer last fall and spring.  This fall she moves up to a more competitive level due to her age. We still have to get her past some of the normal issues of a child playing in competitive sports for the first time. The other children still move a little faster than she does and some have better coordination.  She wants to get in and get involved.  She had her first game this past weekend.  I wish you could see the footage of her running up and down the field with a grin so wide she could catch flies.  It was great.

 

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