Special Needs Sunday: Planes, Trains and Automobiles

19 Oct

Well, we just got home from traveling to Boston for Jenna’s checkup, and I thought I’d take the opportunity to give you an update on what we found out.  We woke Jenna early Thursday morning and drove to Chicago where we caught a direct flight to Boston.  From there, we got a cab that took us to the hospital.  We had her appointment and labwork done, grabbed a quick dinner and then took another cab back to the airport.  Another direct flight (thank goodness) got us back in Chicago around 10:30.  We spent the rest of the weekend in Chicago visiting my aunt and uncle and seeing some of the city.  Jenna got to ride in an airplane, PLUS she got to ride in a taxi, a bus and on a train (the “El”) for the first time.  Even though traveling is tiring (times 10 with a toddler), we had a wonderfully fun time.

The doctors at Children’s Hospital Boston were absolutely thrilled with the progress Jenna has made.  (She’s currently a solid 30 pounds and 37 inches tall.  This puts her right at the 50th percentile for height/weight)  The nutritionist wanted to know what our “secret” was.  Unfortunately, we didn’t have any.  Our best guess is that the switch in formula in the spring, along with adding a high calorie supplement made the most difference.  Even though she stopped eating by mouth, she started gaining weight.  Since our last appointment in April, Jenna has gained 10 pounds.  That’s after a little more than a year of absolutely no weight gain.  Apparently (although they never told us this), the docs were a bit concerned that Jenna might have been unable to gain weight, and that more surgery would be required.  Her 10 pound gain in 6 months changes everything.  Every doctor we saw (we always see a “team”) was thrilled and relieved.

Although there’s no way to prove it, I’m not discounting the possibility that stopping vaccinations made a difference.  I think it’s possible that this allowed her body to focus on growth and healing again instead of having to deal with processing & fighting off the chemicals and antigens we were injecting with the vaccinations.  I’m working on another post devoted to this subject, so we’ll save further discussion for another day.

The biggest news is that we will begin weaning her from her formula and hope that she gets hungry and starts eating by mouth.  We were previously giving her three boxes of Resources Just for Kids (711 mL) formula in one day, and now we’ll drop to two.  We’re going to start by eliminating one of the two boxes that we were giving her overnight.  The hope is that this might help with her lung issues if, in fact, she is aspirating a little bit overnight when she is laying down for the feeding.  It will also help with our issues of her unhooking her feeding tube, because we can wait to hook her up until after she’s asleep since the feeding won’t take the entire night anymore.

We asked if we would have more success with her eating by mouth if we eliminated a tube feed during the day, and the doctor explained that he believes the body has an “energy thermostat” that registers how many calories you’ve taken in over a certain amount of time.  Subtracting calories at any point triggers the “thermostat” to signal that it needs more calories (i.e., hunger).  So, subtracting calories overnight should still result in Jenna feeling more hungry during the day, even if we’re tube feeding her.  We’ll give it a try and adjust as necessary.

They said that, although we are right that many kids with SBS struggle with hydration issues, we don’t have to worry about that with Jenna at this point.  They said the first signs that would alert them to dehydration would be dry, cracking lips, dry skin, etc., and Jenna’s not displaying any of those signs and symptoms.  They said her bloodwork will also give them insight, but if the primary symptoms are absent, we shouldn’t worry.  They did agree that caution should be exercised with any administration of oral rehydration solution because you CAN push the body’s chemistry the other direction and create serious problems if rehydration is not necessary.

Finally, they wrote us a prescription for a new button that will be even lower profile (flatter on her stomach) than the Mic-Key button we were using before.  We asked about this for aesthetic reasons (the Mic-Key does show under some clothes as a noticeable bump), as well as for safety reasons.  With Jenna becoming more and more active, we we thought it makes sense that a lower profile button will have less likelihood of getting caught on something and pulling out.  We’re going to try the Mini-One Balloon Button.  It looks like this:

The balloon is “apple shaped” instead of completely round, which is supposed to minimize leakage.  The external button is also medical grade silicone that is supposed to be softer and more flexible, which will hopefully lead to less irritation and soreness.  We can always switch back if this one doesn’t work.

In other news, we’re back on track with our reward system for drinking her formula by mouth.  She LOVES getting prizes and has even started asking if she can drink “dinosaur juice” earn one.  One day, she requested it three times during the day!  Hooray!  She’s actually quite smart about the whole prize system.  The other day, after she AGAIN unhooked her tube at nap time, I was completely exasperated and asked if she wanted me to start taking her prizes away every time she unhooked the tube.  She nonchalantly said, “OK.”  I thought she didn’t understand what I was saying, so I explained, using the last few prizes she had won as an example, that I would take them back and she couldn’t have them anymore.  I asked if she understood what I was saying.  After no more than a one second pause, she cheerfully said, “You will take them away when I unhook the tube, but then I will drink some more dinosaur juice and get MORE prizes!”  Brilliant.  The mommy is foiled by a two-year-old.

We were nervous about potty issues while traveling, but we had absolutely zero problems.  She held it like a trooper, told us when she needed to go, went on strange, “big” public toilets, and never had one accident.  Hooray!

I’ll leave you with a couple pictures from our visit to the Lincoln Park Zoo in Chicago.  We had a great time there on a beautiful fall day, and would highly recommend that you stop for a visit the next time you’re in Chicago.  It’s open 365 days a year (the pictures of it completely decked in lights during the holiday season, are amazing) and it’s always free.  Awesome!

Jenna dancing as man performs just for her

Hurry UP, Daddy!!  There’s so much to see!


Posted by on October 19, 2008 in Jenna, Product Reviews, Special Needs, Travel


8 responses to “Special Needs Sunday: Planes, Trains and Automobiles

  1. iMommy

    October 19, 2008 at 5:54 pm

    Yay, good news! I love Children’s, they are the absolute best… great hospital and great doctors and nurses and staff.

    So glad to hear that Jenna is doing well — and you all had so much fun!

  2. Susie

    October 19, 2008 at 9:55 pm

    Good news! And so glad there was fun for Jenna too… She’s getting so big! And it’s such a GREAT thing!

  3. anymommy

    October 20, 2008 at 1:27 am

    Fabulous, fabulous news!

  4. Maura

    October 20, 2008 at 2:08 am

    Sounds like it was a great trip, for so many reasons. The pictures were wonderful.

  5. tiendonam

    October 20, 2008 at 4:10 am

    Great trip, you could find some cheap hotel in website when having same trip again

  6. Deborah

    October 20, 2008 at 1:12 pm

    I’ll be anxious to hear how the new button works. We have used the Mic-key for 11 years now, and a lower profile sure would be nice. It’s become much more of an issue for my daughter as she has entered her teens and doesn’t want it showing as much.

  7. AmyInOhio

    October 20, 2008 at 3:18 pm

    I’m so excited to hear the great news!

    Jenna is too beautiful for words of course!

  8. Michelle

    November 12, 2008 at 12:07 pm

    Just popping over from All Mediocre as I have my own selfish special needs interests. It sounds like Jenna is making some real progress, which has to be a huge weight off your shoulders.

    And for the rewards and taking them away… I had to do that with Little Miss, and she had the same attitude. Now… if she has something taken away, it’s TWO things she loses. She can only earn one at a time. That makes for a deficit that she gets… don’t know if it will help you.

    Glad you enjoyed your time in Chicago. It really is a great city! 🙂


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