Megan's Gagging Isn't Any Better

[Fiddle-Faddle]

Wonderful news! Thank you so much for taking the time to keep us updated. Michael gained very quickly after his heart surgery, too, going from 10th percentile to 75th in months. Apparently, first the 2 VSDs and then the muscle bundle were causing him to burn up calories like mad, and also causing him to tire easily (before finishing a meal).

[evie]

Great news, Tanya! So glad to hear it Give our little "chubette" a kiss for me

such good news Tanya about little Megan. More than likely the pounds will not go on as fast when the pump is slowed down. she might get heavy for you to handle too. 'God is Good". evie

[VydorScope]

Tanya,.. hows her gagging doing?

[mouse]

That is wonderful news about Megan. Hard to believe this is the same baby that everyone was praying to put on enough weight for surgery. Still sending prayers and hugs to all of you.

[TCA]

Tanya,.. hows her gagging doing?

So far it's about the same. We're finishing up day 3 on formula alone with no change. I really am starting to think that it's physical. There's a chance she can outgrow some of it, but that all depends. She can't have anything else done for 3 mos. post surgery, so we have that long to try to get her eating and get the aspirations and gagging under control. Thanks for asking. Hopefully it will improve!!!!!

[TCA]

just posted this to caring bridge....

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Megan is still improving, at least in everything but gagging. She is so full of energy and smiles. She's also beginning to show a little spoiled side. ; ) I don't know how we're ever going to get her to walking and crawling if she cries every time she's put on the floor! When she cries much, the gagging starts, so she knows how to get her way. Just cry and cough a little and we come to her rescue. At least we're on to her, but not too sure what's going to change any time soon!

She's been on formula only now for 5 days and we still don't see any real improvement in the gagging. I think we're going to give it a week or two just to make sure it's a fair trial. This leads us to believe that the issue is probably physiological since the formula is formulated for allergenic kids and shouldn't be causing a reaction. We offered her some peaches tonight, but she was more interested in throwing them on the floor than anything else.

Cole had a GI checkup on Thursday and the doctor is very pleased at his progress. He had gained 1 pound 3 oz. in the last 3 months. He wants to see him again in 6 mos., then go to yearly checkups. He is as amazed as we are as to how much help the gluten free diet has been to him. He's now been on the diet for 7 months and is growing like a weed. People are constantly worrying about how hard the diet is for him, but he feels so much better that it is more than worth it. Celiac disease may seem like a difficult diagnosis, but we still see it as a miracle that we now know what made him and Megan sick for so long.

We hope all of you are having a great weekend. The prayers are still speeding her recovery and I still have faith that the gagging will improve. We've just got to keep trying things!

Love,

Jarod, Tanya, Cole, and Megan Hope

[mouse]

I am so sorry that Megan is still gagging. Am certainly happy that she is still improving. I am still sending prayers and warm hugs to you and your family.

[VydorScope]

IM JUST GONNA DIE IF I DONT GET AN UPDATE SOON!!!!

[jerseyangel]

IM JUST GONNA DIE IF I DONT GET AN UPDATE SOON!!!!

I KNOW! I've been thinking the same thing

[AndreaB]

I'm sorry Megan's gagging hasn't gotten better......but Great News about Cole!

[Judyin Philly]

know your so busy but maybe just a one liner 'update'

happy about Cole.

judy in philly

[TCA]

IM JUST GONNA DIE IF I DONT GET AN UPDATE SOON!!!!

I don't want anyone to die or anything! Meg's still doing good. Her gagging might be a tiny bit better. We're continuing the neocate trial for 2 weeks. Her eczema is improving some, so I'm hopeful. She has a yearly assessment today with Early Intervention to continue her therapy, so I've got to run. Hope you all have a great day!

BTW - I put a new picture of her on caring bridge. You can see the little chub yourself!

[Luvs to Scrap]

Thanks for the update. Great news about Cole too. Glad Megan is doing well. I'll keep praying for a full recovery. Kendra

[mouse]

Thanks for the WONDERFUL update. The "chubb" looks so terrific. What a wonderful smile she has. Prayers and Hugs still coming at Megan.

[jerseyangel]

Just visited Caringbridge--I'm a bit behind in the updates!

Megan looks great--all pink cheeks and smiles

Wonderful news about Cole! I'm happy that he's doing so well.

[Judyin Philly]

THANKS TANYA--WILL CK HER PICTURES THERE.

HAPPY STILL WITH COLE AND PRAYING OF MEGAN'S GAGGING WILL IMPROVE

JUDY

[TCA]

Here are the caring bridge updates. Sorry I haven't been posting as much. It's been soooo busy around here. Car broke down - again. Power company cut tree down that tore up part of the roof and the phone line, Jarod dropped a cinder block on his toe and may need surgery.......... It's been nuts, but Meg is doing great, so I'm no complaining!!! Love to all!

MONDAY, AUGUST 21, 2006 04:47 PM, CDT

Just talked to the GI. Megan's gagging hasn't improved on a 2 week trial of formula. We're going to start back with the breastmilk in bottles for her since the Neocate formula tastes AWFUL!!!! I tried it and it tastes like chemicals or plastic or something. Hopefully this will get her to take something by mouth! They're also sending an order to start the feeding clinics once a week. Pray that some of this will work!

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SUNDAY, AUGUST 20, 2006 09:57 AM, CDT

Just wanted to give a quick update on Megan. She's still doing great and seems to feel some better every day. She had a bad night last night with teething, but it's nice to have something normal wrong!

She weighed in this week, at 18-12. We think the 2 oz. drop may be because of fluid since she's still on lasix. Either way, we're not concerned since she was really gaining too fast.

Her gagging still hasn't shown any real improvements. We're trying apples now and she's still not interested in eating, but we're doing all we can to try to get her to. We're working on getting her into feeding therapy once a week instead of once every few months.

We'll see her GI on Sept. 5 to see what's next. We still hope she won't need surgery for this, but time will tell.

Thanks for all the prayers! Keep them up! Hope you all have a great week!

Love, Jarod, Tanya, Cole, and Megan Hope

[Luvs to Scrap]

Thanks for the update, Tanya. We are still praying for Megan every day and praising the Lord for how well she is doing. Hopefully the gagging will let up soon and she will be interested in eating.

It sounds like it has been "raining" at your house too. It seems when one thing breaks three do. Take care. Kendra

[Cheri A]

Geez! Hope that things settle down for you, Tanya!

Still keeping your family in our prayers too!

[Judyin Philly]

Tanya

Holy Mollie...you sure have alot going on.

so glad you posted as i was getting concerned and going to ck the care bridge tonight actually .

Will keep you ALL in my prayers too esp Jerod now..oie.

love, hugs and prayers

judy

[mouse]

Thanks Tanya for the posting. Hopefully everything will settle down at home and Jarod does not need surgery. I am so glad that Megan is still doing well and maybe with the milk change she will be hungry and the gagging will slow and possibly stop. Always sending prayers and hugs to all of you.

[VydorScope]

WEDNESDAY, AUGUST 23, 2006 11:30 PM, CDT

I took Megan in for a weight check today and she has gained 7 oz. in 6 days!!! She's at 19-3. She's actually on the weight chart now at the 3rd percentile. That's the first time since she came home from the hospital in June of 2005. She is very short, though, so that makes her quite chubby. She was wearing a pretty little dress handed down from her cousin, Mary, that is a 12 mos. size! She didn't have any spare room either! She's such a little chunk.

She really is just feeling better every day. She's been blowing kisses for a long time, but tonight she gave me 2 real kisses and big hugs. Then she tried to tickle my belly and just giggled. It's like she's really just come alive! It's so much fun to see her figuring things out.

Her gagging has continued and she's not interested in the bottles I was so excited about. She'll chew on them, but doesn't like it when anything comes out. Part of her feeding therapy is for me to stretch the inside of her cheeks. She didn't gag when I did that the past 2 times, so that is some progress. We'll keep working on the the eating part.....

Thanks for the continued prayers.

Love,

Jarod, Tanya, Cole, and Megan Hope

[Cheri A]

Thanks for the update, Vincent...

Tanya, congrats on getting Megan on the growth chart!!

[TCA]

Thanks Vincent! I just remembered this morning that I forgot to post here and was getting on to do it. I'm pumping less, therefore less time on the computer. TMI, I know, but just didn't want all of you thinking that I'd abandoned you!

Jarod didn't have to have surgery, thank goodness. He did get a job offer out of the blue when he wasn't even looking, though. It looks like a great opportunity, but the people at his current company have been such a blessing and he hates to leave. Big decisions!

The roof is now fixed too, thankfully. It rained all around us, but didn't rain here, so we were lucky, even though we really need it. It's been so dry.

We tried upping Megan's rate last night, trying to give her more time off the pump and she wasn't able to handle the increase. Her gagging isn't any better at all. I get so frustrated!!!!

I have a question for all you breast feeding moms. I'm still pumping about 8 oz. a day and freezing it. My thoughts are that a little bit each day during the cold and flu season might help her to stay well. She has no iterest in the bottles, though I offer every day. I have enough in the freezer now for her to get about 3 oz. each day for a couple months. How long do you think I should keep the pumping up? Now that she has a formula that is working well and she's refusing to drink it, it's very tempting to quit. She's 16 mos. now. The drs. have all told me to quit, but it's almost like a mental thing. I've HAD to do it for so long it's hard to get out of that mindset. any advice is appreciated!

Love and hugs,

Tanya

[Canadian Karen]

Just got caught up on our little cherub Megan's progress. Although she still has the gagging issues, the recovery from the surgery and the weight gain is wonderful news! Will continue my prayers for her.....

God bless,

Karen