This is the VERY FIRST edition of our newsletter from 2000. Enjoy!
Greetings! Welcome everyone to our special little group. There are around 10 of us so far. If you have not been included in the member list and would like to be added please send your child's name and age, parent's names, address, email and a brief paragraph about your child. We are also looking for updates and stories about your FHS children.
Cody 9, and Jesse, 6 in 2000 (photo)
How it Began
by Deana Swanson
The Floating Harbor Syndrome Support Group started when I read a short note included in a MUMS (Mothers United for Moral Support) newsletter in 1998. At the end of the note it read: "Floating Harbor Syndrome" and had Jan Passmore's name phone number. I read it three times in disbelief. Since our son was diagnosed in 1997 I had been unable to find anyone else whose child had this unusual and rare syndrome. I contacted Jan and forturnately she lived in the same state as I did-- Michigan at the time. So, we were able to get together not long after our first couple of phone calls. It was fun for us both the see the boys together and note all the similarities. Cody was immediately drawn to Jesse's favorite toy at that time-- a red flashing light from Radio Shack.
At this meeting Jan and I looked over some rough drafts of the brochure and web pages that now exist. We hoped to find other families so that we could share information and help each other. We are glad that you have found as and look forward to your contributions to the group as well.
Jesse Swanson
Age 7, 37" tall, 28 pounds
When Jesse was born a week late weighing 5 pounds, 13 ounces we thought that he was pretty much normal. He progressed normally and sat up and pulled up at around the right times. His eyes were crossed and he had surgery on both eyes for bilateral strabismus (crossed eyes) when he was 11 months old. At one year of age he just seemed to stop progressing and growing. He was unable to walk on his own, although he did get around pretty well by "cruising", or grabbing onto furniture or pushing chairs around and walking behind them.
He only made a few sounds; "baba" for baby, "mama" for me, "dada" for dad, and "lala" for his favorite thing--lights. When he was 18 months old he weighed 14 pounds and only drank milk and would eat a small amount of oatmeal. My pediatrician said that he was fine, but my friends urged me to seek another opinion. He was my first child, so I really wasn't sure what was "normal". We saw a gastroenterologist (a stomach/digestion doctor) who did agree that there was something wrong because he was so small and wasn't gaining weight. We ended up in the hospital for a week with an NG tube inserted through his nose for feedings. He had this for six months and he did gain a few pounds. (He was up to 18 pounds now at 18 months of age.) By the age of 2 he was beginning to walk a little on his own. The negative part about all this was that he never did gain more weight-- only two more pounds the whole year and a half that he was on the feeding tube, and he quit eating by mouth completely. At the time I thought the feeding tube was a good thing because initially he did gain a little bit of weight, but now that I know about his diagnosis of Floating Harbor I wish we would not have had a feeding tube put in. They are just very small, slow to grow and have "failure to thrive".
He ended up with a little "g-button" which is a plug that goes directly into the stomach from the skin over the tummy. When he was three he began to throw up every feeding of the canned formula the doctors recommended. I put him on a more natural diet and within two weeks he was eating by mouth and talking. (See post on "DIET" for more info.) We had also been using sign language for about 2 years at this point to communicate. By the time he was 4 he was eating enough by mouth to remove the g-button. The hole never did quit leaking so he had to have another little surgery to close it up. Because I had been taking him to speech therapy for the past couple of years and had spent time daily working with him at home, and because I just wanted to be with him all day and not have him gone away at school, my husband and I decided to homeschool him. We have done this starting with teaching him sign language at the age of two, through preschool, kindergarten, and now into first grade. He is on grade level (1st) accomplishing what most of his friends of the same age are doing, but we just do it a little differently. Because of his cataracts we use a giant dry-erase board. I'm not sure if it is his eyesight or fine motor skills, but he has trouble writing, so we do some things orally and he writes some of the larger things. This has worked really well for us.
Jesse is fascinated with electronics. his favorite thing to do is to go to electronic stores and look at all the different stereos. He has his own little "studio" at home with a strobe light, a red flashing light, and CD player, a tape player, a box full of CDs and tapes, and a few other gadgets. He spends time there every day and loves to do educational CDs on the computer.
Our biggest struggle thus far has been the catarats. It is really hard for him to see in the sunlight, so we have dark curtains on all the windows, tell him when to take a step down or up, and lead him by the hand whenever we are outside. We try to stay inside during the summer until around 8 p.m. at night. He also has some of the "odd, hyperkinetic behavior" traits as one of the medical articles puts it. We ahve to prepare him carefully for whatever is coming next-- he can't stand anything to happen quickly or unplanned. He also has temper tantrums.
Our greatest joys have been finding out that he does NOT have something serious, and just enjoying his unique and fun personality. He is sweet and loving, and very tender with his younger siblings. Because he is still so tiny, I love being able to pull him up on my lap and cuddle him like he was a toddler.
(Editor's update: Jesse was homeschooled through age 15. He now in a small, private school where his father and I are teachers, doing 5-6th grade work, mostly all on his own.)
