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

[lawblond7]

Kris:

Hope the GI appointments go well tomorrow. I always dread the GI I think more than the mito/neuro doc Clay has had two fundiplications for his reflux - first at 18 months and g-tube placed and then 4 years ago it had to be re-done for a paraesphageal hernia that developed (and surgery resulted in 3+ week hospital stay - grrr) as no medications helped at ALL for his reflux. Have you tried protonix? Not sure if insurance will cover but maybe they will.

Not sure how you manage with 5 -- I struggle with 3 teenage boys. Yes it is after midnight here and I am still awake -- NO SCHOOL for the boys tomorrow means I can sleep past 4:45

 

[wishin' on a star]

I hope the appointments went well and they are able to do something to help Korissa. I can't imagine trying to sleep like that.

 

[xanphylus]

Hope all went well today! Sending prayers your way!

 

[Mom2mitokids]

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!

Sorry..just haven't seen you around for awhile. Glad to see you posting away.
I know the feeling on the cash. Don't feel bad..we understand.

 

[Mom2mitokids]

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!

Sorry to hear that Lisa also suffers from GERD. Glad she can get the Prevacid. We tried and tried but it's a no. The insurance will ony pay for the Prilosic. Maidcaid sucks.

 

[Mom2mitokids]

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.

That's interesting about the research. I asked her GI and she said it's possible.
Korissa had her Iga(I think that's what it's called) when she was little but never got results. I recently got all her medical records and they sent this report to me and it stated that they were low and they recommended she see an Immunologist. i never got this very important info. She has been sickly all her life and nobody has done anything. She will be getting tested again though.

 

[blessedmom4]

Sorry to hear that Lisa also suffers from GERD. Glad she can get the Prevacid. We tried and tried but it's a no. The insurance will ony pay for the Prilosic. Maidcaid sucks.

It is frustrating when we can't afford medical tests, treatment, meds for our families. Pete's insurance isn't good either (it is very expensive every month and the copays are outrageous...). I saw the post above to Kelly...it is doubly frustrating when all of the info isn't shared with us!

I hope Friday is a better day. Thinking of you!

 

[Mom2mitokids]

GI Update...
Korissa...They are changing her reflux meds to Nexium. They are going to do a breath test to see if she has bacteria overgrowth. Her BM goes from diarrhea to constipated so they want to see if this is the cause. We are working on her weight. She may have a colonoscopy if the breath test is negative.

Kylee... She had a KUB done that morning to see how much stool is in her colon. She is full of stools again. The GI is going to consult another GI as this GI has a few kids on Amitzia and how they are getting it. For those that don't know..this med can help but my insurance won't cover it because it's not FDA approved for kids. This was the GI. She has no idea what else to do for her. Weight..41 lbs and 46in. Weight is up a little, but most likely from the stools.

Ped appt

Korissa.. The Ped is doing a whole bunch of blood work on her including Immunology. She know she has sleep apnea due to the size of her tonsil. Those will most likely be come out soon. Korissa will be having a sleep study done too. Hopefully we can get this done before we leave. Of course we had the talk about her weight. The Ped made my feel like it was my fault. Honestly...she eats what we do. We have a healthy dinner every night. We have fast foods once a week and thats Wed. because they get out early from school. Korissa usually picks Subway. After school it has to be a healthy snack. She swears she doesn't eat at school(but not much I can do when she is at school). She doesn't exercises much due to the fatigue issues and muscle pains. Korissa and I had a talk after and we will both be working on our weight. We also know it could be Mito, but most Mito kids have the opposite problem like we deal with Kylee.

Kylee...This was the Ped. I asked her if she can do direct admits and she said she couldn't She asked why the GI didn't do a direct admit since she was full of stool on Wed. Nobody will tell me what to do. The Ped just said if she doesn't poop alot over the weekend to go to ER after her Specialty eye appt. on Monday since we will be at the hospital. Today and tomorrow she will be on Golytely at home, so hopefully we can by pass the ER on Monday. I really don't want to spend another 6-10 days there and neither does Kylee. Especially we will be inpatient before our trip to make sure she is cleaned out and we don't have to visit a Florida's hospital and she will hopefully not be in pain.... Though every time we go on vacation her body crashes anyways

I'm sure I'm missing things since we were there for over 2 hours.

 

[blessedmom4]

GI Update...
Korissa...They are changing her reflux meds to Nexium. They are going to do a breath test to see if she has bacteria overgrowth. Her BM goes from diarrhea to constipated so they want to see if this is the cause. We are working on her weight. She may have a colonoscopy if the breath test is negative.

Kylee... She had a KUB done that morning to see how much stool is in her colon. She is full of stools again. The GI is going to consult another GI as this GI has a few kids on Amitzia and how they are getting it. For those that don't know..this med can help but my insurance won't cover it because it's not FDA approved for kids. This was the GI. She has no idea what else to do for her. Weight..41 lbs and 46in. Weight is up a little, but most likely from the stools.

Ped appt

Korissa.. The Ped is doing a whole bunch of blood work on her including Immunology. She know she has sleep apnea due to the size of her tonsil. Those will most likely be come out soon. Korissa will be having a sleep study done too. Hopefully we can get this done before we leave. Of course we had the talk about her weight. The Ped made my feel like it was my fault. Honestly...she eats what we do. We have a healthy dinner every night. We have fast foods once a week and thats Wed. because they get out early from school. Korissa usually picks Subway. After school it has to be a healthy snack. She swears she doesn't eat at school(but not much I can do when she is at school). She doesn't exercises much due to the fatigue issues and muscle pains. Korissa and I had a talk after and we will both be working on our weight. We also know it could be Mito, but most Mito kids have the opposite problem like we deal with Kylee.

Kylee...This was the Ped. I asked her if she can do direct admits and she said she couldn't She asked why the GI didn't do a direct admit since she was full of stool on Wed. Nobody will tell me what to do. The Ped just said if she doesn't poop alot over the weekend to go to ER after her Specialty eye appt. on Monday since we will be at the hospital. Today and tomorrow she will be on Golytely at home, so hopefully we can by pass the ER on Monday. I really don't want to spend another 6-10 days there and neither does Kylee. Especially we will be inpatient before our trip to make sure she is cleaned out and we don't have to visit a Florida's hospital and she will hopefully not be in pain.... Though every time we go on vacation her body crashes anyways

I'm sure I'm missing things since we were there for over 2 hours.

I am SOOOOO Incredibly sorry, MD appointments are often more frustrating than informative or helpful.

 

[Mom2mitokids]

As some of you know..I have been an emotional mess lately. I'm sorry. Home life has been stressful. With Korissa and Kylee's health going downhill. My health hasn't been great. My husband..who has been out of work for 2 years finally got a job and was hoping this year will be better, but that's not working out. It's a commission job. He is an Insurance Agent and works for Aflac. Now we are back to square one and is job hunting again. He really need a salary job. My In Laws who are helping out..really can't anymore. He is semi retired as a Pharmacist, but they aren't giving him hours, so he is quiting. Just seeing people getting Pixie Dust was making me cry. Reading PTR is making me cry. I know I should be happy that we are going on Korissa trip soon, but some reason I'm more stressed. So... that's why I have been the way I have. Hopefully I didn't hurt anyone. I was going to take a break from the board, but I just can't. I have made so many friends and the last few days has shown that. I want to thank everyone that Pmed me and gave me encouraging notes.

 

[cantwaittoseemickey]

God Bless you sweety. I am sending you big hugs hun. I know the cleanouts are awful I couldn't imagine being in the hospital with them so many times. I hope they come up with a plan for Kylee soon. Could you maybe email the Cincy Colorectal team and see what they say?

I wouldn't let a ped get me down thinking that Korissa is overwieght. I know you have an idea about food intake

I am sending job pixie dust your way. I hope your husband finds something soon.

 

[tinytreasures]

hugs I hope things look up for your family soon.

 

[teresajoy]

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

Oh, we are always watching! I've had my eye on you for quite awhile!
I just don't post much except on the Disboutique thread!

And, since we are talking about it, I want eveyone to know that Korissa will be getting a Give, so if anyone wants to come over to the Big Give board, and take a look, please do so (unless of course you are family we are doing a Give for!)

 

[Mom2mitokids]

Oh, we are always watching! I've had my eye on you for quite awhile!
I just don't post much except on the Disboutique thread!

And, since we are talking about it, I want eveyone to know that Korissa will be getting a Give, so if anyone wants to come over to the Big Give board, and take a look, please do so (unless of course you are family we are doing a Give for!)

Teresa..Like I post above.. Last week wasn't me. Just everything builded up. Everything was setting off the tears. I would go on other PTR and they would have the posts. I'm sorry. I thank everything Big Give does. ok...here comes the tears. i can't wait to see all the wonderful pixie dust the kids will get. I will be signing up when we get back. I don't sew, but I can do the pixie dust. Matter of fact..I have already bought some stuff.

 

[teresajoy]

Teresa..Like I post above.. Last week wasn't me. Just everything builded up. Everything was setting off the tears. I would go on other PTR and they would have the posts. I'm sorry. I thank everything Big Give does. ok...here comes the tears. i can't wait to see all the wonderful pixie dust the kids will get. I will be signing up when we get back. I don't sew, but I can do the pixie dust. Matter of fact..I have already bought some stuff.

You are absolutely entitled to have weeks like that!!! I do, and I don't have nearly as much going on!!!

And, or course we'd love to have you joing the Big Give, AFTER your trip! (no peaking now!)

I know I speak for every Big Giver in saying that being part of the Big Gives is such a blessing to the ones doing the Giving. I am so honored to be able to have a part in it.

 

[Mom2mitokids]

You are absolutely entitled to have weeks like that!!! I do, and I don't have nearly as much going on!!!

And, or course we'd love to have you joing the Big Give, AFTER your trip! (no peaking now!)

I know I speak for every Big Giver in saying that being part of the Big Gives is such a blessing to the ones doing the Giving. I am so honored to be able to have a part in it.

BTW..I delete that little saying. I just hate what I said. I can't wait to be part. From being on this end..I know the excitment to get this pixie dust for their kids and I want to give back that excitment. Did that make since...I need a nap.

 

[mommy2mrb]

Dear Kris and Family,
I've been following along your PTR and have to say with all you have had to endure and are still a strong loving family is an inspiration

I am so happy that you have been granted Korissa's wish and also a Big Give too!!!!

Your family is beautiful and I hope your trip to will bring some much needed relaxation, magic and fun to you all!!

Blessings and Hugs!!
Lisa

 

[brookerene]

Yay for the Big GIVE!
I'm am so glad you are going to be receiving such a blessing.
It's difficult to have to face not only medical issues and the stress that comes from it but to also have to deal with financial issues to boot.
I remember my dad being out of work a lot and when he was ill it amplified everything....we lost our house and more when he died...
My husband and I being ranchers, and I a part time photographer, sometimes barely pull things off. We are greatful to have medicaid and medicare in NE for Kaleb... if it hadn't been for that,we would have lost the family ranch to my son's illness' medical costs... yes he was worth it but I'm glad it didn't go that way. My husband and I go without insurance because it's just too high... I am greatful that Medicaid paid for my part of the transplant.
Also even though you know others are going through it, it can still be very hard... and we are glad you are here to share...I know I am looking forward to more of your story...and I know your story here will be a story that will help others who come here in the future.... so..... keep posting....keep taking photos and sharing! And sorry I ramble too much....

 

[Mom2mitokids]

Dear Kris and Family,
I've been following along your PTR and have to say with all you have had to endure and are still a strong loving family is an inspiration

I am so happy that you have been granted Korissa's wish and also a Big Give too!!!!

Your family is beautiful and I hope your trip to will bring some much needed relaxation, magic and fun to you all!!

Blessings and Hugs!!
Lisa

Thank you Lisa for coming by. I can't say enough how special all you ladies are. What you all do to make a family feel special.

 

[Mom2mitokids]

Yay for the Big GIVE!
I'm am so glad you are going to be receiving such a blessing.
It's difficult to have to face not only medical issues and the stress that comes from it but to also have to deal with financial issues to boot.
I remember my dad being out of work a lot and when he was ill it amplified everything....we lost our house and more when he died...
My husband and I being ranchers, and I a part time photographer, sometimes barely pull things off. We are greatful to have medicaid and medicare in NE for Kaleb... if it hadn't been for that,we would have lost the family ranch to my son's illness' medical costs... yes he was worth it but I'm glad it didn't go that way. My husband and I go without insurance because it's just too high... I am greatful that Medicaid paid for my part of the transplant.
Also even though you know others are going through it, it can still be very hard... and we are glad you are here to share...I know I am looking forward to more of your story...and I know your story here will be a story that will help others who come here in the future.... so..... keep posting....keep taking photos and sharing! And sorry I ramble too much....

Than you Brooke. All my kids are on Medicaid too. I don't know what we would do without it. Thankfully I'm on it too. In Jan 09 my husband and I did not have insurance and I started having heart issues. I didn't want to go to the ER, but I knew I had too. All I kept saying was..how are we going to pay for this. At the hospital they told me since I had kids, I can get on medicaid. We applied and got on it. Thankfully because 6 months later I had to have a pacemaker put in and was in the hospital for 10 days. Managing a ranch must be hard, but I know my kids would be on . They all love animals.