Hello, my name is Shannon and I have 2-year-old triplets that were born at 26 weeks. My children are Megan, Will & Lee. Will and Lee are identical twins. I do not post often as I am consumed with their day to day therapies etc. I was so excited when I logged on tonight and saw that this group had been formed.

All of my children have severe eating/oral motor planning issues/sensory integration problems. During the past two years of their life they have spent about 6 months in the hospital. The initial NICU stay was 14 weeks for each of them.

Most recently (February - March) we took them to Johns Hopkins (Kennedy Krieger Institute) for a 2-month inpatient-feeding program. Will & Lee have g-tubes and fundoplications were performed over a year ago. Megan currently has a g/j tube but eats exclusively in the j-tube. Prior to entering the feeding program the children ate 0% by mouth. Upon discharge Will and Lee were eating 65% of daily caloric intake by mouth! Megan is still eating 0% by mouth but she is getting better about at least letting us get near her mouth. If the boys continue to do well, hopefully a repeat swallow study in November will show they are no longer aspirating. If it does go away we will have renewed hope that one day they won't need the g-tube at all.

Progress is slow but we feel blessed everyday!! The children have been invloved in the following therapies since turning six months old: OT (2 times per week), EI, ST, PT, & Music therapy weekly. Thankfully, last week they qualified for Arizona Long Term Care. Recently, I introduced them to tumbling once a week and private swim lessons in my home 4 times a week.

Although we have a long road ahead of us, I am finally feeling like the kids are really making some amazing progress. When I think back to all our family has been through (vomiting 10 to 12 times a day each, apnea monitors, rop surgeries, brain bleeds, infections, PDA, fundos, feeding pumps 20 hours a day, traveling out of state to see other specialists, endoscopies, test after test, the list just goes on and on) I realize that with each passing day/month I am more and more amazed at what miracles they are and how truly blessed are family has been. Life is such a gift and things could always be so much worse. I am thankfully for all the amazing things my children teach me. I look forward to logging in daily now that this new group has been formed. I promise my future posts will not be so long!!!

Thanks for reading,
Shannon Goldwater
Mom to Megan (1#15oz), Will (1#14oz) & Lee (1#13oz)
Born 5-25-02 (26 weeks and 4 hours)

Hi Shannon

I am glad to see you found this new forum . I asked the webmaster to start this forum, because as you well know the extra challenges and extra joys !! of special need kid(s) on top of triplets+ is a very unique challenge.
I am glad to hear an update on your kids, I was just thinking about our trip to see Dr Hyman this morning and wondering how you were doing.
Braden was in the hospital again last week for some biliary/liver problems and for removal of more gallstones from his common bile duct. He has already had his gallbladder out and stones were removed just 6 weeks ago too, so the drs are trying to figure out what could be going on. They think he has a rare disorder called Caroli's syndrome/disease but don't know the extent of it yet.
All five of us have also been diagnosed with celaic disease, so we now have a few new specialist to keep straight !

I will look forward to seing your posts here, you have a lot of very valuable experience for many here and hopefully you will find support here too !

Lorraine

Reach for the heart of God and not just His hands.
Organ donation saves lives!
Life happens when love is given.


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Hi Shannon! My special needs child is my oldest with Familial Dysautonomia. We also did Kennedy Krieger a few years back. Is Ping still there? What about Johnnie? Miss Pat still run the playroom? What did you tihnk of the program? Dovi left eating 100% by mouth, but using his g-ube for fluids. Unfortunately, he is back to 100% by g-tube, which ahappned when I had my trips. Sorry, didn't mean to be unencouraging. The program was incredible, but I had a hard time transitioning Dovi from theraputic eating to social eating.

- Sara, mom to Dovi (age 6, special needs), and Elisha, Shana, and Jakie (born 8/12/02 @ 29w6d)

- Sara, mom to Dovi (age 10, special needs), and Elisha, Shana, and Jakie (born 8/12/02 @ 29w6d)they're 6!!

http://dovislife.blogspot.com

Sara,

Yes, we were amazed by the program. I am sorry to hear that Dovi is back on his g-tube. That is a big fear of mine also. Feeding three kids under a protocal that takes 35 minutes per child 4 times a day is just grueling. There is no way I could do this without my wonderful helpers. Also, saying "take a bite, good job taking your bite, & good job swallowing" has become part of my dreams now!!! Actually, I know it is a huge step in the right direction but weighing, pureeing, & preparing the meals is much more work than hooking them to the feeding pumps. We won't give up though!

Miss Pat still works in the playroom several days a week but Suzanne runs the playroom now. Did you ever meet Ms. Sheri? She took us on weekly outings during our 8 week stay.

Shannon

Hi Shannon!

It really sounds like your children have made incredible strides! I love to hear success stories like this! Since you visited KKI, does that mean you are in the Baltimore area? Is the feeding clinic at the downtown location or the Greespring Station station? I was taking my boys to speech at KKI for awhile at Greenspring, and I know of a family with experience with Mt. Washington's feeding clinic. We live in the suburbs of Baltimore.

Krista
Michael, Katherine & Daniel
7/25/01

Krista
b/g/b
July 2001

Krista,

We just temporarily moved to Baltimore so the kids could be treated. I had a hotel room at the inner harbor for the entire 8 weeks. The kids lived in the hospital at the downtown location. Thankfully, during the course of our stay, I flew about 8 people to Baltimore to stay with me at different times during the trip. My occupational therapist even came out so she could be trained. One night I would sleep at the hospital and the next night I would stay at the hotel and my family, husband, or nanny would stay at the hospital that night. This way at least every other night I got a good night sleep. The reclining chair in the hospital room was not very comfortable. We are happy to be back in Arizona now. We already returned to KKI in June for a follow-up visit and we will return again in December.

Shannon

Welcome to the group.

My best friend's little boy (surviving twin born at 23 weeks) had oral aversion and went through two different therapy programs. Also, probably about 75% of the babies born with the birth defect one of my daughters was born with have severe feeding problems and most of those are G-tube fed. With my friend's little boy and the CDH kids, including my daughter, many of the feeding problems started to disappear around age 3 and they finally start gaining weight and getting an appetite and those with G/J tubes are often able to discontinue these. I know that probably feels forever away at this point, but they are getting close! We saw Dani's surgeon when she was about 3 1/2 and I told him it was about four days after her third birthday she wanted Pizza and ate probably 7 pieces out of a large pepperoni! I thought she was having a growth spurt, as she would occasionally eat a ton one day and then go a week without eating at all. But, she never stopped. She is now often able to put away more food than I can, and of course she is still skinny and petite. She burns so much dang energy! I wish I had her metabolism. It is so wonderful seeing her eat, though! LOL! Also, many of her physical problems started getting better after she turned 4. She still struggles, but it isn't really evident to anyone who doesn't know her and she never complains. I saw her perform in her first ballet recital June 4 - my child who I was told would never walk was dancing. I cried and cried tears of joy!

Sounds like the boys are doing great. I know all the therapies can get grueling and are so tiring, and traveling to see specialists etc. We have been through all of that, too. You are a great mom! I think soon you will see more and more of the fruits of your labor with them!

There is supposedly a very vigorous program in Virginia that is guaranteed to work. Are you familiar with it? If not, I can get you the specifics.

Michelle

Mom to three beautiful girls and a precious baby boy!

http://www.shaklee.net/healthyhomematters

Michelle,

Your story is so encouraging. I sure hope that happens to our 3 as well! I am not familiar with the program in Virginia. Will you please get me the specifics? Since Kennedy did not really work for my daughter, I am always in search of other alternatives. Any information you can provide would be helpful.

Many Thanks,
Shannon

Hi

I am also interested in different feeding programs and am willing to travel to the best place to help my daughter. She is completely G tube fed, and I would really like to get her eating by mouth. We see a feeding specialist at Stanford, but they really haven't done anything, and she actually eats LESS by mouth since we started therapy with them. She used to eat baby food by mouth, but now is refusing, and pushing away the spoon when it comes near. She also has a horrible oral aversion, and gag reflex that is persistant even though we do therapy with her mouth (finger brushes, tapping, etc.) She will play with chewing on crackers, but never swallows anything, the same with baby food, if you get it in her mouth she just pushes it back out with her tongue. She will accept the pacifier and bottle in her mouth, but will only bite it, and frequently gags, and then gets really angry and slaps anything near her mouth away.

She has done great on the G tube and weighs close to 16 lbs now at 9 months (she weighed 2.2 lbs when born). She seems fascinated to watch us eat, but let anything get near her mouth and it shuts up tight. I want to get this baby eating again by mouth and will go where ever I have to, so if anyone has any suggestions on good programs I would love to hear them.

Right now we are looking at -
Kennedy Krieger
Penn State
And the Children's Hospital in Richmond Virginia
as options, if anyone has info on any of these programs I would love to hear from you.


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Vicki & Pam Lee
Moms of -

Spencer Ryan - Baby B
Olivia Suzanne - Baby C
Born - 10/11/03 32w2d

Our Little Angels
^sweet unknown boy or girl - Baby D^ passed away May 2003
^Julian Willem - Baby A^ passed away 08/25/03 25w4d born 10/11/03 with his brother and sister

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Welcome Shannon! Glad to hear you are making progress. My trio was born at 24w 3d. My DS passed away 10 days later but my Girls went on to thrive. My DD,Abby, had some feeding issues but none like most are experiencing here.
Welcome again.

Korrie~
^i^B/G/G 24 w 3d,1/17/00
B 10/31/01
B 1/27/03

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Hi Shannon,
Its good to hear how your kiddos are! Sounds like you are going non-stop, you are such a great and patient mom.
I remember meeting you (almost a year ago!) at that little play date in scottsdale and just loved meeting your kids. I hope that they continue to progress, and that is great you have contacts with a program to help them.
this is a great forum. my son was diagnosed with autism last month and it is great to know of other triplet moms that are experiencing similar dynamics that special needs children bring to the triplet mix.
keep us posted on your babes.

Meg