SamBeller.org

Friday, July 28, 2000

Sam's Having a Great Summer

Dearest Sam’s Fan Club:

Sam is doing great! He has been very healthy with only minor issues in his health due to overheating or overtiring. (But who doesn’t have problems like that with Dallas summers? Speaking of the heat, the whole family had a fabulous time a couple Saturdays ago at the Dallas Zoo for Sam’s cousin Luke’s 3rd birthday party. Sam loved seeing the animals while we pushed the “monkeys” around in strollers. David’s brother and wife generously paid for all of it: admission, parking, lunch, etc. Thanks Luke!

Sam still has nursing from 8 to 8 each day. We love Nancy as she is very good with Sam, respects his person, is very detail oriented and helps with some of the administrative like ordering supplies and medications. Awesome!

We believe Sam is fully recovered from his scoliosis surgery. The infection around the incision officially was healed on June 29th - a full 3 months since the surgery - much longer than anticipated. However, Sam is delighted that he can take real tub baths again and no more dressing changes - pulling tape off him everyday! We are so thankful.

For now, we are all agreed that the trach should remain in ... get Sam through a winter and see how he does with it and how well we can keep him with the trach in. It does add a sense of security to ensuring he has a safe airway. We suction secretions out of the trach throughout the day with Sam and it helps to remove aspirated stuff from his lungs.

Sam’s use of Oxygen has really diminished. Occasionally, while we are away from home, Sam’s Oxygen saturation levels drop (from being allergies, pollution, change of environment). So we still take Oxygen with us where ever we go. But, we actually only use it may be once every two weeks. So, things keep getting better. We hope Sam can manage okay once school starts ... he can’t wait, but it’ll be much more activity than he’s had over the last months.

The upcoming health items are not nearly as consequential as the back surgery, but… Before school starts (Aug 14), we will most likely be doing an eye surgery to readjust the muscles for better focusing and alignment. One of the first warning signs when Sam was a baby was that his eyes crossed and they had a “tic"--he is unable to follow a moving object smoothly. So his very first surgery was on his eye muscles (at 10 mos.). This is the same thing. They have loosened and floated up over the past 6 1/2 years.

The other is more serious. Because of Sam’s inability to swallow efficiently, his biggest danger is that he cannot deal with normal mouth secretions. They slide down his throat and into the lungs. We are currently investigating the possibility of blocking two, three, or four of his saliva glands (there are only four total). We are told that this will eliminate the risk of aspirating saliva into his lungs, which often causes pneumonia. However, it is a very uncomfortable procedure which would result in bleeding and swelling for several weeks. We are trying to find a person who has experienced the surgery so that we have someone to who can tell us what it’s really all about. No luck so far. Please pray for us to find that person quickly. Again, we petition your prayers for this decision, in general. Removing the salivary glands is permanent and we don’t want take away natural advantages that saliva adds to Sam’s health (teeth, thinning sinus secretions, etc). We just want to make the best decision on Sam’s behalf and fear unexpected results or side-effects.

Thanks to some friends who painted Sam’s room in late March (David and Jana Myer and friend), we had a perfect foundation for stenciling fish, shells, crabs and starfish all over Sam’s walls. The colors are great: one side is the beach in tan colors, the other is the ocean in light turquoise with a rainbow of fish. We had lots of fun doing it and Sam’s room is very cheery. Having the nurses help with Sam gives us the time to do home projects like this ... it’s been great.

Sam’s been having a great summer. We did get him in a wading pool a couple of times. Kelly holds him while he’s on a small floatation pillow. He loves floating and kicking his legs. It’s a little nerve-racking as we have to be absolutely certain that we don’t get water around his trach sight since it would just seep in around the trach tube and into his lungs. Yikes. Sam’s doctor told us to do what we felt was safe and that we were comfortable with ... driving in a car is dangerous every day too ... we didn’t want to deny Sam the joy that he finds in the water.

Sam’s friends at church gave him a Half-Birthday party (his real birthday is in January). We had half a cake on half plates with half napkins. The kids played games, pushing Sam around in his wheelchair and being silly. Everyone had a great time. The kids even had a prayer time for Sam while they all circled around, laying hands on him. We are so grateful for such a loving group of folks. Sam loves all that attention.

Unfortunately, Benjamin Weaver, Sam’s friend, is moving to Fort Worth. Benjamin helped get rid of boredom while Sam has been home so much. We will be very sad to see Benjamin and his sweet family move away.

In general, we are loving life. Baby Simone is crawling & pulling up to standing, Jacob is talking (and screaming) more and better. Tevah is becoming an excellent singer and dancer and loves to do shows for our various houseguests. We are truly blessed with each other and with you! Thanks for all of your continued support: in prayer, money and otherwise. After the crazy eight months from last October through June, we are very pleased to be able to relax a bit and live normal life for a while…

We’ve received so many wonderful emails, letters, and drawings from children. Thank you all for so much continued encouragement!

Love you,

David, Kelly, Sam and the crew