Make a Wish (and other organizations) - Wish Trippers UNITE! Volume THREE! :)

[Cheshire Figment]

I would see what the MAW people have to say about it. And I cannot visualize Medi-Cal disallowing any coverage out of state. Everyone takes a vacation out of state once in a while.

 

[kailatilear]

Poor Abby is in so much pain tonight. Her back is really bothering her, poor thing is crying how she hates her life and this disease and is so tired of being in pain. She asked if the dr. could just cut out the part in her back that hurts. She had pt yesterday and I am thinking between that and the cold weather that is coming through is what is causing it, on top of the horrible cough. I gave her some loritab and wrapped her tight in bed. It might also be from the flu she had, last time she had the flu, she ended up collapsing on the bathroom floor with back spasams.

Dh is now sick, not vomiting, but with horrible head and chest congestion. I will be so happy when all this sickness is out of my house. However, I am thankful it hit now and not at the end of Febrauary.

 

[katieswish]

Hi
I am the mom of two amazing girls. Katie is the wish child, she has been a fiesty little thing since the moment she was born 8 yrs ago on Dec 9. Katie is being granted a wish due to her leg length discrepany that is a result of surgery when she was 21 days old.

I will give you a bit of background on our little miracle girl. She was born weighing 380 grams (approx 1 lb 1 oz) and 12 weeks premature. She was the result of a very uneventful 1st pregnancy with no complications she was measuring small for gestational age but healthy.

After several days in NICU, she was progressing until her PDA closed and all hell broke lose. On top of being severe IUGR, once this bypass to her heart closed she no longer had blood circulating to her lower body due to a coarcation of the aorta(narrowing which in Katie cases was less a piece of spagetti wide) as well as several holes in her heart.

None of these heart defects are complicated when you are a 5 lb baby but at a 1lb no one really had much hope for survival and we were told to say good bye to our daughter. The medical intervention they were using to keep her alive could not continue long term and no one had really done this type of surgery on an infant of this size. Fortunately someone was watching over Katie and a old friend from college offered to make a few calls, she knew a cardiologist at Yale and within few days a very unstable Kathryn was moved to Childrens Hospital in Boston for some experimental treatments to fix her heart. Getting through the first
catherization was only a 10% chance of survival, but she made it.

The second cath which was performed 15 days after the first was much more complicated due to the fact that they could not go through her ambilical cord again since it dried up and fell off, so they had to use instruments made for bigger infants to try to open her aorta more to help with blood flow. It was during this procedure that Katie's femoral artery on her right leg was damaged and lack of blood flow caused her growth plates in her knee to die so it does not grow. After this her odds increased to 25% survival. After 3 caths and 2 open heart surgeries all at less than 4 lbs. Katie is a happy healthy almost 8 yr old

We are awaiting an above the knee amputation. But we an experimental afo kate continues to amaze us with her determination and optimism.

www.youtube.com/watch?v=OSRT2LEeFwA

 

[kailatilear]

Hi
I am the mom of two amazing girls. Katie is the wish child, she has been a fiesty little thing since the moment she was born 8 yrs ago on Dec 9. Katie is being granted a wish due to her leg length discrepany that is a result of surgery when she was 21 days old.

I will give you a bit of background on our little miracle girl. She was born weighing 380 grams (approx 1 lb 1 oz) and 12 weeks premature. She was the result of a very uneventful 1st pregnancy with no complications she was measuring small for gestational age but healthy.

After several days in NICU, she was progressing until her PDA closed and all hell broke lose. On top of being severe IUGR, once this bypass to her heart closed she no longer had blood circulating to her lower body due to a coarcation of the aorta(narrowing which in Katie cases was less a piece of spagetti wide) as well as several holes in her heart.

None of these heart defects are complicated when you are a 5 lb baby but at a 1lb no one really had much hope for survival and we were told to say good bye to our daughter. The medical intervention they were using to keep her alive could not continue long term and no one had really done this type of surgery on an infant of this size. Fortunately someone was watching over Katie and a old friend from college offered to make a few calls, she knew a cardiologist at Yale and within few days a very unstable Kathryn was moved to Childrens Hospital in Boston for some experimental treatments to fix her heart. Getting through the first
catherization was only a 10% chance of survival, but she made it.

The second cath which was performed 15 days after the first was much more complicated due to the fact that they could not go through her ambilical cord again since it dried up and fell off, so they had to use instruments made for bigger infants to try to open her aorta more to help with blood flow. It was during this procedure that Katie's femoral artery on her right leg was damaged and lack of blood flow caused her growth plates in her knee to die so it does not grow. After this her odds increased to 25% survival. After 3 caths and 2 open heart surgeries all at less than 4 lbs. Katie is a happy healthy almost 8 yr old

We are awaiting an above the knee amputation. But we an experimental afo kate continues to amaze us with her determination and optimism.

www.youtube.com/watch?v=OSRT2LEeFwA

So glad your little girl is getting a wish. She is definitely a miracle child. You will enjoy reading these boards, everyone here is very helpful and wonderful.

 

[Bill_Lin]

Hi
I am the mom of two amazing girls. Katie is the wish child, she has been a fiesty little thing since the moment she was born 8 yrs ago on Dec 9. Katie is being granted a wish due to her leg length discrepany that is a result of surgery when she was 21 days old.

I will give you a bit of background on our little miracle girl. She was born weighing 380 grams (approx 1 lb 1 oz) and 12 weeks premature. She was the result of a very uneventful 1st pregnancy with no complications she was measuring small for gestational age but healthy.

After several days in NICU, she was progressing until her PDA closed and all hell broke lose. On top of being severe IUGR, once this bypass to her heart closed she no longer had blood circulating to her lower body due to a coarcation of the aorta(narrowing which in Katie cases was less a piece of spagetti wide) as well as several holes in her heart.

None of these heart defects are complicated when you are a 5 lb baby but at a 1lb no one really had much hope for survival and we were told to say good bye to our daughter. The medical intervention they were using to keep her alive could not continue long term and no one had really done this type of surgery on an infant of this size. Fortunately someone was watching over Katie and a old friend from college offered to make a few calls, she knew a cardiologist at Yale and within few days a very unstable Kathryn was moved to Childrens Hospital in Boston for some experimental treatments to fix her heart. Getting through the first
catherization was only a 10% chance of survival, but she made it.

The second cath which was performed 15 days after the first was much more complicated due to the fact that they could not go through her ambilical cord again since it dried up and fell off, so they had to use instruments made for bigger infants to try to open her aorta more to help with blood flow. It was during this procedure that Katie's femoral artery on her right leg was damaged and lack of blood flow caused her growth plates in her knee to die so it does not grow. After this her odds increased to 25% survival. After 3 caths and 2 open heart surgeries all at less than 4 lbs. Katie is a happy healthy almost 8 yr old

We are awaiting an above the knee amputation. But we an experimental afo kate continues to amaze us with her determination and optimism.

www.youtube.com/watch?v=OSRT2LEeFwA

Welcome to the boards, Mom of Katie.

You can read about our wish trip on the link in my signature. Our daughter is also 8 now, though she was 5 when we took our wish trip. I would love to help you with tips along the way as you plan for this trip of a lifetime. Just send me a private message when you have posted enough times on the thread to allow you to send pm's.

Bless you,

Bill

 

[brookerene]

In regards to Medicaid (Medi-Cal) not all state programs will cover out of state expenses so check with Medi-Cal and Make-A-Wish. From what I have heard the DL trips are the 3 days so what your social worker said is correct, but I find it hard to believe they would give only $50/day for food and souveniors... depending on the size of your family that would only pay for 1.5 meals for 4 at a counter service restaurant. One of the reasons that DW is longer is because of Give Kids the World, so I hope you can go there....either way, I hope you can get what you need and have a blast!

 

[xanphylus]

I'm a new poster at DIS boards but have lurked a lot over the years. I was working my way through this monster thread but was wondering if anyone could give me some insight?

This past year and a half has been really rough- DH lost his job, we lost our house, we had a 5 day NICU stay with my DD and then DS got diagnosed with cancer. He just finished his last chemo earlier this week and we decided to go ahead and start working on his wish. Just for background purposes we live in CA and our DS is on Medi-Cal(CA's Medicaid) and he qualified for CCS which is supplemental insurance for certain conditions when your medical bills are more than a % of your income. We wanted to do WDW since we live in SoCAL and have been to DL many times but she said since we are on Medi-Cal that isn't an option with MAW since they had problems in the past with Medi-Cal not covering in FL if an emergency arises. We were so disappointed but decided to go to DL instead.

She said the DL trip consisted of 3 days to Disney/ 2 nights in a DL resort hotel with a limo ride or transportation reimbursement and $50 a day for food. While we are so happy to have the opportunity for a wish trip, this doesn't seem to be in line with the stories I'm reading. Has anyone had any experience or possibly have some words of advice? We really wanted to go to WDW but maybe that's not possible?

ETA: We haven't actually spoke to anyone from MAW yet, this is coming from our social worker.

Just did a quick search on the medi-cal website and found this:

7. What services does Medi-Cal cover for recipients who are temporarily out of state?
CCR, Title 22, Chapter 3, Article 1.3, Section 51006, allows reimbursement for medically necessary emergency services that need to be provided by an out-of-state provider to California Medicaid (Medi-Cal) recipients temporarily in another state. Note that some services require prior authorization. For more information, call the Out-of-State Provider Unit at (916) 636-1960.

Site:
http://files.medi-cal.ca.gov/pubsdoco/contact/docs/oos_faq.htm#7

So, apparently they do allow out of state services. I would def ask MAW to send you to WDW & GKTW. Have your kiddo state that in the wish even!

Hope this helps!

 

[Mom2mitokids]

I'm a new poster at DIS boards but have lurked a lot over the years. I was working my way through this monster thread but was wondering if anyone could give me some insight?

This past year and a half has been really rough- DH lost his job, we lost our house, we had a 5 day NICU stay with my DD and then DS got diagnosed with cancer. He just finished his last chemo earlier this week and we decided to go ahead and start working on his wish. Just for background purposes we live in CA and our DS is on Medi-Cal(CA's Medicaid) and he qualified for CCS which is supplemental insurance for certain conditions when your medical bills are more than a % of your income. We wanted to do WDW since we live in SoCAL and have been to DL many times but she said since we are on Medi-Cal that isn't an option with MAW since they had problems in the past with Medi-Cal not covering in FL if an emergency arises. We were so disappointed but decided to go to DL instead.

She said the DL trip consisted of 3 days to Disney/ 2 nights in a DL resort hotel with a limo ride or transportation reimbursement and $50 a day for food. While we are so happy to have the opportunity for a wish trip, this doesn't seem to be in line with the stories I'm reading. Has anyone had any experience or possibly have some words of advice? We really wanted to go to WDW but maybe that's not possible?

ETA: We haven't actually spoke to anyone from MAW yet, this is coming from our social worker.

This is not true at all. We live in So Cal and all my kids are on Medi-cal. My husband also lost his job. We are going to Florida in March for my daughter MAW trip. This is actually our second MAW trip as my youngest also got a wish and we went to DW in 08. My kids were on Healthy Families then. DL trip doesn't compair to the Florida trip. Which MAW chapter are you going through? We are going through the LA Chapter. Please don't listen to whoever you are talking too. BTW...welcome!!!!

 

[Mom2mitokids]

Hi
I am the mom of two amazing girls. Katie is the wish child, she has been a fiesty little thing since the moment she was born 8 yrs ago on Dec 9. Katie is being granted a wish due to her leg length discrepany that is a result of surgery when she was 21 days old.

I will give you a bit of background on our little miracle girl. She was born weighing 380 grams (approx 1 lb 1 oz) and 12 weeks premature. She was the result of a very uneventful 1st pregnancy with no complications she was measuring small for gestational age but healthy.

After several days in NICU, she was progressing until her PDA closed and all hell broke lose. On top of being severe IUGR, once this bypass to her heart closed she no longer had blood circulating to her lower body due to a coarcation of the aorta(narrowing which in Katie cases was less a piece of spagetti wide) as well as several holes in her heart.

None of these heart defects are complicated when you are a 5 lb baby but at a 1lb no one really had much hope for survival and we were told to say good bye to our daughter. The medical intervention they were using to keep her alive could not continue long term and no one had really done this type of surgery on an infant of this size. Fortunately someone was watching over Katie and a old friend from college offered to make a few calls, she knew a cardiologist at Yale and within few days a very unstable Kathryn was moved to Childrens Hospital in Boston for some experimental treatments to fix her heart. Getting through the first
catherization was only a 10% chance of survival, but she made it.

The second cath which was performed 15 days after the first was much more complicated due to the fact that they could not go through her ambilical cord again since it dried up and fell off, so they had to use instruments made for bigger infants to try to open her aorta more to help with blood flow. It was during this procedure that Katie's femoral artery on her right leg was damaged and lack of blood flow caused her growth plates in her knee to die so it does not grow. After this her odds increased to 25% survival. After 3 caths and 2 open heart surgeries all at less than 4 lbs. Katie is a happy healthy almost 8 yr old

We are awaiting an above the knee amputation. But we an experimental afo kate continues to amaze us with her determination and optimism.

www.youtube.com/watch?v=OSRT2LEeFwA

Hi and welcome to the boards. So glad Katie is getting her wish. This board is amazing.

 

[kimmg]

I would see what the MAW people have to say about it. And I cannot visualize Medi-Cal disallowing any coverage out of state. Everyone takes a vacation out of state once in a while.

That's what I kept thinking. I'm wondering if the problem is actually the supplemental insurance since they are who are covering his chemo and radiation at the children's hospital.

In regards to Medicaid (Medi-Cal) not all state programs will cover out of state expenses so check with Medi-Cal and Make-A-Wish. From what I have heard the DL trips are the 3 days so what your social worker said is correct, but I find it hard to believe they would give only $50/day for food and souveniors... depending on the size of your family that would only pay for 1.5 meals for 4 at a counter service restaurant. One of the reasons that DW is longer is because of Give Kids the World, so I hope you can go there....either way, I hope you can get what you need and have a blast!

Thank you for clarifying about the 3 days. That makes sense. I will do some research and talk with Make-A-Wish. I was almost wondering if she meant $50 per person per day? There are 4 of us (DH, myself, DS-4 and DD who is 9 months). Hopefully we can work it out. I would love for him to have a special trip. I think he would be blown away by DW since he adores DL so much.

Just did a quick search on the medi-cal website and found this:

7. What services does Medi-Cal cover for recipients who are temporarily out of state?
CCR, Title 22, Chapter 3, Article 1.3, Section 51006, allows reimbursement for medically necessary emergency services that need to be provided by an out-of-state provider to California Medicaid (Medi-Cal) recipients temporarily in another state. Note that some services require prior authorization. For more information, call the Out-of-State Provider Unit at (916) 636-1960.

Site:
removed so I can post

So, apparently they do allow out of state services. I would def ask MAW to send you to WDW & GKTW. Have your kiddo state that in the wish even!

Hope this helps!

Thank you so much! That helps tons. I will have to do a search and see what I can find out about CCS.

This is not true at all. We live in So Cal and all my kids are on Medi-cal. My husband also lost his job. We are going to Florida in March for my daughter MAW trip. This is actually our second MAW trip as my youngest also got a wish and we went to DW in 08. My kids were on Healthy Families then. DL trip doesn't compair to the Florida trip. Which MAW chapter are you going through? We are going through the LA Chapter. Please don't listen to whoever you are talking too. BTW...welcome!!!!

Thanks for the welcome and for sharing your experience. We are being referred to the Fresno/Central CA chapter since DS is getting his treatments there. LA is actually closer but for whatever reason we got sent up that way which has made the weekly trips rough. How exciting about your trip coming up and I'm sorry about the job loss.

I love this place!

 

[Mom2mitokids]

That's what I kept thinking. I'm wondering if the problem is actually the supplemental insurance since they are who are covering his chemo and radiation at the children's hospital.



Thank you for clarifying about the 3 days. That makes sense. I will do some research and talk with Make-A-Wish. I was almost wondering if she meant $50 per person per day? There are 4 of us (DH, myself, DS-4 and DD who is 9 months). Hopefully we can work it out. I would love for him to have a special trip. I think he would be blown away by DW since he adores DL so much.



Thank you so much! That helps tons. I will have to do a search and see what I can find out about CCS.



Thanks for the welcome and for sharing your experience. We are being referred to the Fresno/Central CA chapter since DS is getting his treatments there. LA is actually closer but for whatever reason we got sent up that way which has made the weekly trips rough. How exciting about your trip coming up and I'm sorry about the job loss.

I love this place!

Do you live in So Cal or Northern? Are you close to CHLA?

 

[kimmg]

Do you live in So Cal or Northern? Are you close to CHLA?

We are about an hour and 45 minutes north of LA Children's without traffic and 3 hours to Central CA Children's hospital. I guess because we are in Kern Co. they wanted us to go the other direction. We contemplated switching but by the time we were looking into it our son had adjusted to their hospital and we didn't want to start over with a new place and new people. The bonus is that it's a pretty easy drive without traffic and lots of places to stop if needed for the baby.

 

[Haybuggsmom]

Hi
I am the mom of two amazing girls. Katie is the wish child, she has been a fiesty little thing since the moment she was born 8 yrs ago on Dec 9. Katie is being granted a wish due to her leg length discrepany that is a result of surgery when she was 21 days old.

I will give you a bit of background on our little miracle girl. She was born weighing 380 grams (approx 1 lb 1 oz) and 12 weeks premature. She was the result of a very uneventful 1st pregnancy with no complications she was measuring small for gestational age but healthy.

After several days in NICU, she was progressing until her PDA closed and all hell broke lose. On top of being severe IUGR, once this bypass to her heart closed she no longer had blood circulating to her lower body due to a coarcation of the aorta(narrowing which in Katie cases was less a piece of spagetti wide) as well as several holes in her heart.

None of these heart defects are complicated when you are a 5 lb baby but at a 1lb no one really had much hope for survival and we were told to say good bye to our daughter. The medical intervention they were using to keep her alive could not continue long term and no one had really done this type of surgery on an infant of this size. Fortunately someone was watching over Katie and a old friend from college offered to make a few calls, she knew a cardiologist at Yale and within few days a very unstable Kathryn was moved to Childrens Hospital in Boston for some experimental treatments to fix her heart. Getting through the first
catherization was only a 10% chance of survival, but she made it.

The second cath which was performed 15 days after the first was much more complicated due to the fact that they could not go through her ambilical cord again since it dried up and fell off, so they had to use instruments made for bigger infants to try to open her aorta more to help with blood flow. It was during this procedure that Katie's femoral artery on her right leg was damaged and lack of blood flow caused her growth plates in her knee to die so it does not grow. After this her odds increased to 25% survival. After 3 caths and 2 open heart surgeries all at less than 4 lbs. Katie is a happy healthy almost 8 yr old

We are awaiting an above the knee amputation. But we an experimental afo kate continues to amaze us with her determination and optimism.

www.youtube.com/watch?v=OSRT2LEeFwA

Welcome!!! Your baby definately is a miracle and deserves this special wish.
I too am the mommy of micro preemies. My Dustyn weighed 1lb 2 oz and Miss Haylee weighed 1lb 11oz. We too had a rough NICU stay.
Haylee's trip was in Sept. Anything you need feel free to PM me. I would be happy to help with anything I can!!

 

[kailatilear]

Ugggg, another night with Abby in pain. This time she finally tells me that a boy in her class squeezed her hips . She said she told the teacher, but no phone call from her. Gonna see how tomorrow goes and might have to call the dr. just to see if there is another compression fracture in her vertebra or something with her rib. I would love to go one month without a fracture of some sorts.

 

[Bill_Lin]

I wrote this for Lysi when we returned from our Wish Trip. It is 100% true and pretty well tells the story.

A MAGIC KINGDOM


I don't know if you'll believe
I met a Princess today
And was greeted in her castle
In a most royal way


Yes I met a real Princess
Who stooped to welcome me
And inside her royal castle
I met another three


There were towers that had banners
Stained glass windows in the wall
And the sparkling lights of magic
In the royal banquet hall


A fairy flew from somewhere
And she waved her magic wand
Then she blessed me with a smile
That became our special bond


My greatest wish was granted
And a star thats only mine
In that land of deep enchantment
Where the brightest wonders shine


I became a royal princess
At that magic coronation
And was gifted with enchantment
In a regal celebration


For a princess is a princess
When she is one in her heart
When becoming a true princess
Inner beauty's where you start


I can take you to my castle
In a land of mystery
If you have the childlike virtue
Of believing what you see


If you know that there is wonder
And perceive the majesty
Of a child's imagination
It will set your spirit free


Whisk away then to that place
Where, as a child, I flew
There all your dreams are living
And wishes all come true

 

[Mom2mitokids]

We are about an hour and 45 minutes north of LA Children's without traffic and 3 hours to Central CA Children's hospital. I guess because we are in Kern Co. they wanted us to go the other direction. We contemplated switching but by the time we were looking into it our son had adjusted to their hospital and we didn't want to start over with a new place and new people. The bonus is that it's a pretty easy drive without traffic and lots of places to stop if needed for the baby.

Your close to me. We live in the Antelope Valley. We are very close to the Kern county line.

 

[katieswish]

I can't believe how much information I have found on this site in just one night.

It is amazing how much info you have all put together.


Katie's trip is not until the first week of February, but since I work retail from now until Christmas is pretty much just work work work, this site will make it so much easier

 

[kimmg]

Your close to me. We live in the Antelope Valley. We are very close to the Kern county line.

So close! I grew up in Lancaster and am in Mojave right now.

 

[Mom2mitokids]

So close! I grew up in Lancaster and am in Mojave right now.

Wow!! Small world. We are actually live in Quartz Hill. Two seconds from Lancaster...lol

 

[Mom2mitokids]

I can't believe how much information I have found on this site in just one night.

It is amazing how much info you have all put together.


Katie's trip is not until the first week of February, but since I work retail from now until Christmas is pretty much just work work work, this site will make it so much easier

I love this board. Even though this is our second wish trip to DW, I found so many things I didn't know.