DownSyn Forum Forum Index DownSyn Forum
Extra Chromosome... Extra Family
 
shoppingShop   Watched TopicsWatched Topics   FAQFAQ   SearchSearch   MemberlistMemberlist   CalendarCalendar  RegisterRegister 
 ProfileProfile   MapMap   Log in to check your private messagesLog in to check your private messages   Log inLog in 
Forum TourForum Tour 

Off to the feeding clinic - finally and yikes!!


 
Post new topic   Reply to topic   printer-friendly view       DownSyn Forum Forum Index -> General
View previous topic :: View next topic  
Author Message
Momtoseven
Senior Member


Joined: 11 Aug 2008


Last Visit: 05 Oct 2010
Posts: 834
Location: Pennsylvania

PostPosted: September 01 2010, 8:11 PM    Post subject:
Off to the feeding clinic - finally and yikes!!
Reply with quote

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!!

_________________
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
Back to top
View user's profile Send private message [ Hidden ]
Momof6
Super Member


Joined: 30 Sep 2008


Last Visit: 06 Oct 2010
Posts: 1911
Location: Cortland, NY

PostPosted: September 01 2010, 9:44 PM    Post subject:
Reply with quote

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

_________________
~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



Back to top
View user's profile Send private message [ Hidden ]
AliMama
Senior Member


Joined: 08 Aug 2009


Last Visit: 05 Oct 2010
Posts: 961
Location: Illinois

PostPosted: September 01 2010, 9:44 PM    Post subject:
Reply with quote

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

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


Back to top
View user's profile Send private message  
Edensmama
Senior Member


Joined: 15 Sep 2008


Last Visit: 06 Oct 2010
Posts: 630
Location: Chicagoland area

PostPosted: September 01 2010, 10:02 PM    Post subject:
Reply with quote

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

_________________
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



Back to top
View user's profile Send private message  
maziebaby
Senior Member


Joined: 28 Jan 2008


Last Visit: 06 Oct 2010
Posts: 178
Location: california

PostPosted: September 01 2010, 10:06 PM    Post subject:
Reply with quote

positive thoughts and prayers being sent your way!!!

_________________
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)



Back to top
View user's profile Send private message [ Hidden ]
Tigger
Super Member


Joined: 28 Jan 2006


Last Visit: 06 Oct 2010
Posts: 6543
Location: NSW, Australia

PostPosted: September 02 2010, 5:07 AM    Post subject:
Reply with quote

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

_________________
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
Back to top
View user's profile Send private message  
eroch
Senior Member


Joined: 12 Feb 2009


Last Visit: 06 Oct 2010
Posts: 131
Location: Canada

PostPosted: September 02 2010, 7:01 AM    Post subject:
Reply with quote

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.

_________________
Evelyne
Mom to
Benjamin (99)
Jeremy (01)
Alexandrine - DS (Nov 07)
Back to top
View user's profile Send private message  
logansmom
Senior Member


Joined: 15 Nov 2004


Last Visit: 06 Oct 2010
Posts: 497
Location: Indiana

PostPosted: September 02 2010, 11:00 AM    Post subject:
Reply with quote

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

Kim

_________________

Wife of Marvin
Mom to Logan (3/6/03, Ds) and Carson (9/6/05)
Back to top
View user's profile Send private message [ Hidden ]
Momtoseven
Senior Member


Joined: 11 Aug 2008


Last Visit: 05 Oct 2010
Posts: 834
Location: Pennsylvania

PostPosted: September 02 2010, 2:33 PM    Post subject:
Reply with quote

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.

_________________
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
Back to top
View user's profile Send private message [ Hidden ]
eroch
Senior Member


Joined: 12 Feb 2009


Last Visit: 06 Oct 2010
Posts: 131
Location: Canada

PostPosted: September 03 2010, 7:19 AM    Post subject:
Reply with quote

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.

_________________
Evelyne
Mom to
Benjamin (99)
Jeremy (01)
Alexandrine - DS (Nov 07)
Back to top
View user's profile Send private message  
Tigger
Super Member


Joined: 28 Jan 2006


Last Visit: 06 Oct 2010
Posts: 6543
Location: NSW, Australia

PostPosted: September 03 2010, 7:43 AM    Post subject:
Reply with quote

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.

_________________
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
Back to top
View user's profile Send private message  
Momtoseven
Senior Member


Joined: 11 Aug 2008


Last Visit: 05 Oct 2010
Posts: 834
Location: Pennsylvania

PostPosted: September 03 2010, 9:14 AM    Post subject:
Reply with quote

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.

_________________
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
Back to top
View user's profile Send private message [ Hidden ]
eroch
Senior Member


Joined: 12 Feb 2009


Last Visit: 06 Oct 2010
Posts: 131
Location: Canada

PostPosted: September 03 2010, 9:31 AM    Post subject:
Reply with quote

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.

_________________
Evelyne
Mom to
Benjamin (99)
Jeremy (01)
Alexandrine - DS (Nov 07)
Back to top
View user's profile Send private message  
Display posts from previous:   
Post new topic   Reply to topic   printer-friendly view       DownSyn Forum Forum Index -> General All times are
Page 1 of 1

 
Jump to:  
You cannot post new topics in this forum
You cannot reply to topics in this forum
You cannot edit your posts in this forum
You cannot delete your posts in this forum
You cannot vote in polls in this forum
You cannot post calendar events in this forum
Click above to help support this site
Click below to help support the DSRTF



Down Syndrome: For New Parents

Powered by phpBB © 2001, 2008 phpBB Group