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Megan's Gagging Isn't Any Better

TCA

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VydorScope Proficient
VydorScope
Posted

Sooo Any updates? :huh:

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NoGluGirl Contributor
NoGluGirl
Posted
NoGluGirl, we started probiotics yesterday, so hopefully that will cover that base. She's only eating elemental formula and breastmilk at this point, despite my best efforts, so I don't think the diet is an issue. We're trying to get her to where everything doesn't come back up, so we're still trying foods. I'll mention this test to her GI next week.

Judy,

I'm not posting as much either now that I'm not pumping as much. Thanks for your kind words. How are You? I think of and pray for you often. So good to see a picture of you. I've got to get one of me out there. We are so blessed that she is gaining so well now. Thanks for caring so much! Hugs!

Dear TCA,

Be careful with fruit! Starches are allowed for children in the diet for Candida, but not the fruit, because it converts to sugar in the gut. The nystatin and probiotics may be all it takes. Of course, the doc will have to determine that. Certain foods have molds in them that increase the misery. If you still have it, avoid fermented foods of any kind, dairy, peanuts, pistacchios, dried fruit, fruit juice, processed tomato products, and leftovers more than a day old. The breast milk could make her sick if it contains these things and the baby has Candida. Good luck!

Sincerely,

NoGluGirl :D

TCA Contributor
TCA
Posted
  • Author

Here's the latest update on caring bridge:

Well, Megan had a big day yesterday. The surgeon said the healing looked great and released her. The GI was very pleased with her weight gain and actually cut her back on her intake of formula, so she can now be disconnected from the tube 8 hrs a day!!! She was at the 50th percentile for weight to hieght and about 20th for weight alone. She's still not on the chart for height, but look at her Mama! The cardiologist did an ultrasound and said the shunt repair was the best he had ever seen and that the contegra valve is fuctioning perfectly (praise God)! Her heart function was described as "superb". All of this was great news, but her pulmonary arteries are still narrowing. They could leave things as they are, but the extra pressure this puts on her heart could destroy the valve. So, he wants to do another heart cath in the next couple months and dialate the arteries. If that doesn't work, she may need a stent put in to hold the artery open. These stents are adjustable in size and can be enlarged as she grows via another heart cath. This will only require an overnight hospital stay. The plan is that after this she won't need another cath for years, though. All the doctors were thrilled at how interactive she is and how far she has come since surgery. She's just a different child. She charmed them all with her smile and wave.

Some of the best news is that we can start to get out more now!!!! The three of us went to PF Chang's last night to celebrate. Megan's first restaurant visit went great, with her smiling and waving to everyone around. She was amazed at all the people and loved the attention. We still need to avoid people who are sick and everyone has to wash their hands before holding her, but we're so excited to be able to get out some! I know all her great aunts and cousins and other friends and family can't wait to see her.

Thank you again for the prayers that have brought Megan this far so successfully. We know they will carry her through this next procedure and hopefully things will hold steady for a while. She's just so happy and feels so much better. We are so blessed and praise God for what He's doing in her life.

Love to all - Jarod, Tanya, Cole, and Megan Hope

VydorScope Proficient
VydorScope
Posted

GREAT NEWS!!!

Hows the gagging?

TCA Contributor
TCA
Posted
  • Author
Dear TCA,

Be careful with fruit! Starches are allowed for children in the diet for Candida, but not the fruit, because it converts to sugar in the gut. The nystatin and probiotics may be all it takes. Of course, the doc will have to determine that. Certain foods have molds in them that increase the misery. If you still have it, avoid fermented foods of any kind, dairy, peanuts, pistacchios, dried fruit, fruit juice, processed tomato products, and leftovers more than a day old. The breast milk could make her sick if it contains these things and the baby has Candida. Good luck!

Sincerely,

NoGluGirl :D

Thanks for that list. I talked to the GI a lot about continuing pumping yesterday and he made a lot of good points. AT this point she is THRIVING on the formula and he doesn't want to do anything to stop the progress we've seen. He isn't opposed to her getting breast milk, but wants to be very careful for the very reason that you mention, what I eat, she gets. I've eliminated so many things and some have helped, but others we saw no change in and it's hard to figure out what's causing what. He said that many studies have been done on immunilogical issues and that babies depend on the breast milk for their antibodies, but after that start depending on their own immune systems to kick in, it's just the way thier bodies are designed. Meg's now 17 mos, so he's doesn't think it would be much benefit to continue through the winter. She's starting the feeding clinic next week and we're hoping she will start eating soon. He was very diplomatic, obviously being aware of the emotional issues involved too. He had rather us start her on solids to test out what she's allergic to now that she's doing so well. I think I'm going to stop pumping since all of those points make such good sense, plus I have ton in the freezer by now. It's hard to know for sure, but she doesn't seem to need it now and Lord knows I need the time. sorry for the long explaination, I guess I'm just working through all of it as I type.

GREAT NEWS!!!

Hows the gagging?

Thanks!! The gagging has improved a little She only gagged one time during the night last night and it was when it was almost time for her Reglan, which helps to supress it. It's still not great, but I do see slight improvement. Hopefully that will continue!!!

VydorScope Proficient
VydorScope
Posted

She eating any food yet, or is it still all via the tube?

AndreaB Contributor
AndreaB
Posted

Tanya,

Everything sounds good, including the decision to stop pumping.

Thank you for the updates.....I always read, just don't always post. :)

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jerseyangel Proficient
jerseyangel
Posted

Tanya--

Thanks for the wonderful news about Megan! She is doing so well, I was just smiling as I read your post :) I know that the gagging will reduce with time--such an improvement already!

My best to the whole family :D

NoGluGirl Contributor
NoGluGirl
Posted
Thanks for that list. I talked to the GI a lot about continuing pumping yesterday and he made a lot of good points. AT this point she is THRIVING on the formula and he doesn't want to do anything to stop the progress we've seen. He isn't opposed to her getting breast milk, but wants to be very careful for the very reason that you mention, what I eat, she gets. I've eliminated so many things and some have helped, but others we saw no change in and it's hard to figure out what's causing what. He said that many studies have been done on immunilogical issues and that babies depend on the breast milk for their antibodies, but after that start depending on their own immune systems to kick in, it's just the way thier bodies are designed. Meg's now 17 mos, so he's doesn't think it would be much benefit to continue through the winter. She's starting the feeding clinic next week and we're hoping she will start eating soon. He was very diplomatic, obviously being aware of the emotional issues involved too. He had rather us start her on solids to test out what she's allergic to now that she's doing so well. I think I'm going to stop pumping since all of those points make such good sense, plus I have ton in the freezer by now. It's hard to know for sure, but she doesn't seem to need it now and Lord knows I need the time. sorry for the long explaination, I guess I'm just working through all of it as I type.

Thanks!! The gagging has improved a little She only gagged one time during the night last night and it was when it was almost time for her Reglan, which helps to supress it. It's still not great, but I do see slight improvement. Hopefully that will continue!!!

Dear TCA,

It is such wonderful news about Meg! Her improvement is so exciting! We are pulling for her! She is sort of our baby too! Babies systems are quite different. They are still developing. If you need any more info on Candida, I would not mind providing any you need. If you are concerned about her catching viruses in the winter, if she is not allergic to corn, you could give her Sambucol. It is a black elderberry extract that boosts immunity up to 300 percent! I take it during cold and flu season. It dramatically reduces the time you spend sick, if you do happen to contract a virus. Keep the updates coming!

Sincerely,

NoGluGirl :P

Fiddle-Faddle Community Regular
Fiddle-Faddle
Posted

Wonderful news, Tanya--you and Megan are both amazing!

Would boosting the immune system be a BAD idea for a celiac? Our immune systems are already TOO good, aren't they?

nikki-uk Enthusiast
nikki-uk
Posted

Wonderful news!Onwards and upwards! :):)

NoGluGirl Contributor
NoGluGirl
Posted
Wonderful news, Tanya--you and Megan are both amazing!

Would boosting the immune system be a BAD idea for a celiac? Our immune systems are already TOO good, aren't they?

Dear Fiddle-Faddle,

Usually, Celiacs and gluten intolerant individuals have weaker immune systems. Celiacs produce antibodies as a result of an autoimmune response. Leaky-gut syndrome is a typical precursor to food allergies and sensitivities. These proteins leak into the system, then antibodies begin to develop. Every time that protein is consumed, the immune system attacks the body. Candida is responsible for that frequently. It is almost unheard of that someone suffering with a yeast overgrowth does not have a food allergy or sensitivity to something. This is according to the research, anyway. I hope this makes sense.

Sincerely,

NoGluGirl B)

VydorScope Proficient
VydorScope
Posted

Its been 8 days... no updates :( :(

TCA Contributor
TCA
Posted
  • Author

I had JUST posted to her caring bridge site and was getting on here to copy it in! Sorry to keep you waiting! Megan has just come alive since surgery, which is great, but I have a fraction of the time on here that I once had! I miss you guys!

*************************************************

THURSDAY, SEPTEMBER 14, 2006 08:25 PM, CDT

Just wanted to give another Megan update. She weighed in today at 19-11. The pediatrician is glad to see her weight gain taper off some. If she doesn't gain any in the next few weeks, we'll increase the feeds, but for now it's good to not gain any! Hard to believe, isn't it?

I took Cole and Megan to the library this morning for a reading hour. They LOVED it! They both danced (Megan sitting, of course) and loved the stories. It's so nice to be able to get out some now.

We were able to schedule Megan's heart cath this week for Nov. 10. This is when they will try to stretch her pulmonary artery with the balloon and then place a stent if the stretching isn't successful. Jarod has already checked and his new job is willing to work with him to let him off. He starts Monday, so pray for him and us during the transition.

Just last night I was thinking her gagging is really improving, but she had a really bad day of it today. Overall, I do think it's starting to improve. The feeding therapy was cancelled this week because of the speech therapist being sick. She'll start on Monday and hopefully we'll see big strides there. Meg did take a couple tiny sips of juice this week, but that's all we've been able to get down her. At least that's some improvement. She started physical thereapy back today and was NOT happy about it. Hopefully Ms. Rhonda will have her up and walking soon!

We hope you all have a great weekend!

Love - Jarod, Tanya, Cole and Megan Hope

VydorScope Proficient
VydorScope
Posted

How about you? How you doing?

AndreaB Contributor
AndreaB
Posted

Thanks Tanya.

I hope you are taking care of yourself too.

It is exciting to hear of you being able to take the kid out. :)

Judyin Philly Enthusiast
Judyin Philly
Posted

WONDERFUL NEWS tANYA.

GLAD YOU COULD GET OUT AND INTO THE 'NORNAL ' WORLD AGAIN.

YES, HOW ARE YOU DOING.

WILL KEEP YOU IN MY PRAYERS AS JAROD STARTS HIS NEW JOB.

LOVE

JUDY

TCA Contributor
TCA
Posted
  • Author

Thanks guys! I'm doing really good. I'm a little stressed with Jarod starting the new job, but they seem to be a good company about putting family first. I hope we don't have any issues with them. I just wish Jarod was going to have more time off before he started, but they need him too bad at the old job. I'm sure it will all work out.

I know it's probably TMI, but we share sooo much on here. this past week has been the first time in over 4.5 years since I haven't been either pregnant or breastfeeding or both. As selfish as it might sound, it's been kinda nice. I think I needed the break and didn't realize it.

The bad thing about not pumping is I don't get much computer time these days. Trust me, I may not be here as much, but I haven't forgotten you guys! Just PM me if anything big happens to make sure I don't miss out!!! It's hard to wade through all the messages!

NoGluGirl Contributor
NoGluGirl
Posted
Thanks guys! I'm doing really good. I'm a little stressed with Jarod starting the new job, but they seem to be a good company about putting family first. I hope we don't have any issues with them. I just wish Jarod was going to have more time off before he started, but they need him too bad at the old job. I'm sure it will all work out.

I know it's probably TMI, but we share sooo much on here. this past week has been the first time in over 4.5 years since I haven't been either pregnant or breastfeeding or both. As selfish as it might sound, it's been kinda nice. I think I needed the break and didn't realize it.

The bad thing about not pumping is I don't get much computer time these days. Trust me, I may not be here as much, but I haven't forgotten you guys! Just PM me if anything big happens to make sure I don't miss out!!! It's hard to wade through all the messages!

Dear TCA,

I am so glad to hear things are going better! We are all pulling for you guys! I still wonder about the Candida issue with Megan. All those antibiotics can really damage your body! I know there is a stool test to diagnose it. Doctor's data is who my doctor goes with, but Enterolab does it, too. It is really a parasitology test. Keep posting!

Sincerely,

NoGluGirl B)

TCA Contributor
TCA
Posted
  • Author
Dear TCA,

I am so glad to hear things are going better! We are all pulling for you guys! I still wonder about the Candida issue with Megan. All those antibiotics can really damage your body! I know there is a stool test to diagnose it. Doctor's data is who my doctor goes with, but Enterolab does it, too. It is really a parasitology test. Keep posting!

Sincerely,

NoGluGirl B)

I'll mention this to her GI. She's still on probiotics, though. Thanks for the info.

TCA Contributor
TCA
Posted
  • Author

just posted this to caring bridge. Hope all of you are doing well!

*************************************************************

Megan started feeding therapy at Huntsville Hopsital on Monday. I really like the therapist there and her approach to things. She doesn't want us to force things on Megan, but was glad to hear that we include her at mealtime and let her play with food. All these things give her positive reiforcement for eating. She taught me some exercises and massages to do on her cheeks and gums. Her muscles are not developing properly due to her not eating and these will help to loosen them up. We go back next Monday for another hour session. The gagging still hasn't improved, but we're really praying for progress.

Megan weighed in at 20 punds this week! She's not slowing down much and she's off the pump for 8 hours a day now. It's so nice to be able to get her out without toting the pump around with us. She also saw the cardiologist in Hville and he took her off of Lasix completely. She's only on 2 heart meds now, one of which is asprin (she'll be on that for life with the conduit). The second, digoxin, will be discontinued after her cath in Nov.

We've been working with her in the stander contraption the physical therapist brought for her. She's cooperating more, especially if you take her outside in it. She loves to be outside and we are a lot now that the weather has been so wonderfully cool.

I hope all of you have a great weekend and I'll report in next week on how her progress is going.

Love you all!

jerseyangel Proficient
jerseyangel
Posted

Thanks for the update, Tanya :) Continued good wishes to all of you!

nikki-uk Enthusiast
nikki-uk
Posted
Thanks for the update, Tanya :) Continued good wishes to all of you!

Ditto!! :):)

NoGluGirl Contributor
NoGluGirl
Posted
just posted this to caring bridge. Hope all of you are doing well!

*************************************************************

Megan started feeding therapy at Huntsville Hopsital on Monday. I really like the therapist there and her approach to things. She doesn't want us to force things on Megan, but was glad to hear that we include her at mealtime and let her play with food. All these things give her positive reiforcement for eating. She taught me some exercises and massages to do on her cheeks and gums. Her muscles are not developing properly due to her not eating and these will help to loosen them up. We go back next Monday for another hour session. The gagging still hasn't improved, but we're really praying for progress.

Megan weighed in at 20 punds this week! She's not slowing down much and she's off the pump for 8 hours a day now. It's so nice to be able to get her out without toting the pump around with us. She also saw the cardiologist in Hville and he took her off of Lasix completely. She's only on 2 heart meds now, one of which is asprin (she'll be on that for life with the conduit). The second, digoxin, will be discontinued after her cath in Nov.

We've been working with her in the stander contraption the physical therapist brought for her. She's cooperating more, especially if you take her outside in it. She loves to be outside and we are a lot now that the weather has been so wonderfully cool.

I hope all of you have a great weekend and I'll report in next week on how her progress is going.

Love you all!

Dear TCA,

This is so exciting! Hopefully some testing will help identify the trouble with the gagging. Poor kid. It is good she weighs more. We appreciate the update, and are pulling for you!

Sincerely,

NoGluGirl :P

mouse Enthusiast
mouse
Posted

I am so glad that you are steadily moving forward. I always keep you all in my prayers and I thank you for always keeping us informed. Many Hugs.

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