I haven't been on too much lately - crazy, crazy busy and things are about to get intensely crazy. If you could keep Mark in your prayers over the next several weeks - we are heading to the feeding clinic on Tuesday and have high hopes of having Mark down to just 3 bolus feeds at the end of four weeks. I have a feeling it is going to be very difficult for Mark and very stressful for all of us. I am really anxious to get started and get this kid eating, but I am not looking forward to the process. I am also very afraid that it will fail - I mean what if it doesn't work - i am not sure where we go from here. Anxiety is very high at this time. It's also football season which means I lose my husband(the referee) for most of every weekend :(. This is going to be a long, long month!! Thanks for any prayers and positive thoughts!!

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Maureen - Mom to Daniel(21), Brandon(19), Jordan(13)PDD, Thomas(11), Carrie(7), Samuel(4) and Mark (2 - ds, av canal -repaired 6/10/08, pulmonary hypertension)
https://www.carepages.com/carepages/MarkEdwardC32708

Thoughts and prayers will be with Mark, you, and the whole family. Huge hugs and much love.

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~Christine~
Mom of 6
Brandon ADD/ADHD 17, Chelsea 14, Connor 12, Logan 6, Cody 4 & Austin 1 ( DS & Hirschsprungs pull through 12/8/08 )
http://www.caringbridge.org/visit/austinpaquin

Will be thinking of you and praying all goes well--hang in there!

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Maresa,
Mom to Alisa (10-29-2008) DS, complete AV canal repair on 3-6-09

You can do it Mark! Go get 'em, Tiger!! HUGS mama!!

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Nathalie
Mom to Eden (DS) 4-13-08
Wife to Luciano (the best daddy in the world) since 10-8-2005
www.caringbridge.org/visit/edensalem

positive thoughts and prayers being sent your way!!!

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Lisa Wife to Glenn Mom to Johnathan 24 Allison 21 Chad 15 Greta 14 Sarah 12 Jennifer 9 and Mazie 6 (DS/ vsd repair 8/03)

Praying it all goes well. I know how hard it is to get them to eat.

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Karyn
Mum to Nikki (Jul 89), Stefanie (Sep 96), Joel [June 98] and Talitha (DS) (Nov 05) AVSD/PDA repaired 23 March 06

"I will praise You, for I am fearfully and wonderfully made; Marvelous are Your works, and that my soul knows very well." Psalm 139:14

We went through a tube wean recently and were 3 months tube free. I know how stressful it can be. We tried a more natural approach than feeding clinics and let me daughter become hungry. It takes a few days for the child to get it but then the choice to eat was hers. You can search on Graz model if you're interested. We did it all by ourself with a little tiny bit of support from our local OT. It might be worth looking into if the feeding clinic sounds too stressful.

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Evelyne
Mom to
Benjamin (99)
Jeremy (01)
Alexandrine - DS (Nov 07)

Prayers, hugs, and lots of positive thoughts. Please keep us posted throughout the process!

Kim

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Wife of Marvin
Mom to Logan (3/6/03, Ds) and Carson (9/6/05)

Thanks for all your thoughts and prayers everyone.

Evelyne - I discussed the Graz method with our OT, but at the time we were so concerned with Mark vomiting that she thought he might dehydrate. I had not thought of it again until you mentioned it here - I think it makes a lot of sense. I think Karyn may have used something like it with Talitha - is that right, Karyn? I will keep it in mind if the feeding clinic is unsuccessful.

One of the things I like about Dr. W and his team at the fc is that they want the children to have a positve eating experience and to associate feeling good with eating, but I am still feeling apprehensive about if it doesn't work or if the vomiting comes back. Trying to stay hopeful.

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Maureen - Mom to Daniel(21), Brandon(19), Jordan(13)PDD, Thomas(11), Carrie(7), Samuel(4) and Mark (2 - ds, av canal -repaired 6/10/08, pulmonary hypertension)
https://www.carepages.com/carepages/MarkEdwardC32708

Momtoseven wrote:

One of the things I like about Dr. W and his team at the fc is that they want the children to have a positve eating experience and to associate feeling good with eating

That was very important to us. I wish you the best of luck and hope Mark does eat without vomiting.

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Evelyne
Mom to
Benjamin (99)
Jeremy (01)
Alexandrine - DS (Nov 07)

We didn't use any particular method but we did allow Talitha to get hungry - which was something she had never really experienced. It was hard and she lost weight but we got there. We also snuck water into her via tube while she was asleep just to keep her hydrated but gave her salty stuff to try and make her drink while she was awake. She would eat well before she would drink. Also we only gave her what she wanted to eat - never forced anything on her. Her diet is still very limited but at least I can run out of the house now with a banana and a bottle of water and I know that will keep her going.

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Karyn
Mum to Nikki (Jul 89), Stefanie (Sep 96), Joel [June 98] and Talitha (DS) (Nov 05) AVSD/PDA repaired 23 March 06

"I will praise You, for I am fearfully and wonderfully made; Marvelous are Your works, and that my soul knows very well." Psalm 139:14

I know this may sound crazy and it's a little scary, but Mark seems so much happier and content when his belly is empty. I wish I could go back to his time in the hospital - I would have tried breast feeding - they would not even let me try, because of the aspiration concern. It was all way too overly cautious IMHO.

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Maureen - Mom to Daniel(21), Brandon(19), Jordan(13)PDD, Thomas(11), Carrie(7), Samuel(4) and Mark (2 - ds, av canal -repaired 6/10/08, pulmonary hypertension)
https://www.carepages.com/carepages/MarkEdwardC32708

Maybe he has problems digesting the formula (or amount is too large). It takes a while for hunger to really kick in after tube feeding stop, specially if the child was overfed while tube fed. If we skipped a few tube feeds with my daughter, she was fine with it. We had to stop the whole thing and hunger really kicked in after a day or two when she was really hungry and started to eat. We also did fluids during sleep when necessary in the beginning (water or pedialyte only) to prevent dehydration. It took us 3 attempts but it worked.

We're back to tube feeds but it's not because my daughter doesn't want to eat (quite the opposite actually, we have to watch her because she wants to eat what's on our plates) but she gets food stuck in her esophagus and it's causing aspiration of her saliva so back to tube feeds until we find out what's going on, otherwise we'll have aspiration pneumonia all the time.

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Evelyne
Mom to
Benjamin (99)
Jeremy (01)
Alexandrine - DS (Nov 07)