Korissa's Magical MAW/GKTW PTR....4 HUGE Big Give (2-18-11)..page 40

[Mom2mitokids]

She looks absolutely beautiful in the Cinderella dress!!! You can tell by her face how much she loves it....

I can not believe we are only 47 days away from leaving!!!! Can you?



Once we get towards 10 days it is going to be chaos in our house....

Thank you i can't believe 6 more weeks. So much things to do.

 

[Mom2mitokids]

Kyle looks adorable in her dress! Ali loves the dresses with the button holes. Otherwise, we have to thread it up and out her collae, taping it to her shoulder blade. I have a cousin who is a fashion designer in NYC, and we're always getting on her to make cute tube feeding stuff. You all must be getting so excited. It's getting closer!

Thank you Kelly kylee doesn't wear alot of dresses because I have no clue how to make button holes. I just cut a hole in them....hence why i don't buy dresses. I tried threading the tubing like you stated, but kylee hated it. Tell your cousin to make some cute backpacks. You just can't find cute backpacks that have duel(two-way) zipper and padded shoulder straps. The only place I have found them is Hello kitty..which she is tried of wearing.

 

[Mom2mitokids]

What a beautiful dress...it is only outshone by your daughter's smile! She looks so happy to be a princess. Let's hope this is just the beginning of lots of smiles for all of you!

Thank you She truly felt like a Princess... with messy hair...lol.. I can't wait for her to go to BBB.

 

[Mom2mitokids]

What a beautiful dress...it is only outshone by your daughter's smile! She looks so happy to be a princess. Let's hope this is just the beginning of lots of smiles for all of you!

I read Mark's PTR. What special boys you have. We went on Kylee's wish trip Nov. 08 too. We went on the 16th-22nd. We just missed ya.

 

[HeatherSP]

I don't have a child with a tube but I have to say I totally LOVE that dress. The little whole is just perfect. How awesome is that!!!! It brought tears to my eyes. Your daughter is beautiful!

 

[visitingapril09]

Hey all, We need to figure out who all is going to be there around the same time. Maroo, you are going too?

We are there March 22nd to April 5th. How many of us overlap and maybe we meet up? We are most flexible cause we are doing 2 weeks on our own as we did our wish trip in 04

 

[Mom2mitokids]

I don't have a child with a tube but I have to say I totally LOVE that dress. The little whole is just perfect. How awesome is that!!!! It brought tears to my eyes. Your daughter is beautiful!

Thank you Pictures don't do it justice. Nini is the best.

 

[xanphylus]

Great dress!!! Super cute!

 

[blessedmom4]

Kris, Sending hugs your way! Praying you are having a stress free day! (Okay, I can dream can't I??? I know with five children that is easier said than done)!

 

[Mom2mitokids]

Hey all, We need to figure out who all is going to be there around the same time. Maroo, you are going too?

We are there March 22nd to April 5th. How many of us overlap and maybe we meet up? We are most flexible cause we are doing 2 weeks on our own as we did our wish trip in 04

Alison..I wrote you..didn't you get it. We had to move our date to March 13th. March 22nd wouldn't work with my kids school. I'm so bummed. I really wanted to meet you. What date are you getting there?

 

[Mom2mitokids]

Great dress!!! Super cute!

Thank you for coming by and seeing the dress Didn't Nini do an awesome job.

 

[Mom2mitokids]

Kris, Sending hugs your way! Praying you are having a stress free day! (Okay, I can dream can't I??? I know with five children that is easier said than done)!

Thank you Judy I'm feeling better. It was a stupid thing I was letting it get to me.

 

[blessedmom4]

Thank you Judy I'm feeling better. It was a stupid thing I was letting it get to me.

Not sure what was wrong but here are more hugs for you and I hope it doesn't happen again, whatever it was!!!

 

[Mom2mitokids]

Please keep Korissa and Kylee in your thought s and prayers tomorrow. They both have GI appt.

Korissa has been really suffering from her GERD. Hopefully they can change some meds around. She also has been sick so much lately. I really think it's the reflux going to her sinuses. Kylee...will..we just get some answer about her motility

The big appt for Korissa is Thursday. She is going to see a new Ped. Really the one that Kylee is seeing now. Took some time to swtich Korissa over. poor kid can't even sleep due to the burning and restless leg syndrome. She also needs a complete blood workup to check her Iga(I think that's it). She has always had low immunities and we need something done about this. Hence the reason she is always sick with high fever. She is working on another cold as we speak. We also need to talk about her tonsils that need to come out. She also needs a repeat sleep study. I believe her sleep apnea is getting worse. Oh..and her heartrate. Boy...I need to write all this out.

 

[that's nice]

It is terrible that your girls have to go through all this. What medication is Korissa on for gerd? My DW has it and has been on a few different ones including prilosec and ummmm geez, I can't think of the other 2.

I hope she has an 'easy' appointment on Thursday.

 

[Mom2mitokids]

It is terrible that your girls have to go through all this. What medication is Korissa on for gerd? My DW has it and has been on a few different ones including prilosec and ummmm geez, I can't think of the other 2.

I hope she has an 'easy' appointment on Thursday.

Tim...Korissa is on the max she can on Prilosec. My insurance won't pay for Prevacid since it's over the counter. I'm wonder about Nexium..the purple pill..lol She sleeps almost sitting up.

 

[that's nice]

Tim...Korissa is on the max she can on Prilosec. My insurance won't pay for Prevacid since it's over the counter. I'm wonder about Nexium..the purple pill..lol She sleeps almost sitting up.

Those are the other 2 Melody has taken.

You might want to check... even though Prevacid is over the counter, I think you can still get a script for it so your insurance company will cover it. Something to ask your doctor or call the insurance company directly to find out.

It must be horrible for her to have to sleep like that.

 

[blessedmom4]

Tim...Korissa is on the max she can on Prilosec. My insurance won't pay for Prevacid since it's over the counter. I'm wonder about Nexium..the purple pill..lol She sleeps almost sitting up.

Lisa has had severe GERD since birth. She DOES take Prevacid (and zantac and reglan). We had to jump through hoops to get pre approval for the Prevacid (renewed every six months while I hold my breath to see if they will pay). So far they have, we just pay the co-pay...which isn't cheap, I know. Tim was right about trying to get insurance to help, the doctor fills out the paperwork and presents his reasons for wanting to use it.He can also appeal if they say no. If she has tried other meds and nothing helps besides the prevacid, they should approve it, it just might take a bit of time. I know how frustrating that can be!

 

[kellyw8863]

I hope that their appointments went well! We have a similar theory regarding the GERD as to why Ali gets chronic sinus infections, and when we mentioned it to her GI, she said that there is no literature supporting it, but she believes it is possible and is actually what her current research is focused on.

Has Korissa had an immune work-up? Ali has been sick a lot lately, too, and other than not retaining her vaccine titers, her immune work-up was normal. BUT (which is why I am sharing this with you), her mito doc (we see Korson at Floating) said that for some unknown reason, kids with mito often have fully functioning immune systems on paper, but they cannot get the job done. Ali's immunologist corroborated this, and she will be starting SCiG after she visits with ORL (to rule out anatomical causes of the respiratory/sinus stuff).

Just thought I'd throw that out there in case the info might be helpful for you to get some help with Korissa.

 

[xanphylus]

Thank you for coming by and seeing the dress Didn't Nini do an awesome job. I think you are the first Disboutiquer to come by...so thank you

I have been reading the entire time silly!

I haven't done too many gives lately- been too broke to do any... I feel bad not being able to do many, I know other people have been short on cash too. I have gotten a few e-mails from them asking for help, but I just can't right now.... sigh. Hopefully soon I can get back into the swing again- and then they can do more gives!