Our First Family Vacation (Make-a-Wish)

[BuzznWoodysMom]

Hello all! I was researching our MAW trip and came across disboards. This is my first forum so I wanted to apologize if I completly mess this up! So please bear with me as I try to navigate my way thru the forums and threads (and life) and abbreviations. I feel so clueless but you all seem like a patient and caring group, so I'll do my best! My wish kid is my 6 year old son, who has CP, Epilepsy, Autism, Stroke related to an AVM, and is prepping for brain surgery #2. I also have a 3 year old son with epilepsy, but he is doing well! And a "bonus son" who is thankfully healthy! Thanks for reading!

 

[BuzznWoodysMom]

Hi all, was just wondering if anyone else out there has made the drive from Michigan and could recommend some clean, kid-friendly places to stop for the night?

 

[xanphylus]

You're doing it right! Just give everyone time to find you and get linked on the Wish Trip pre-trip report page. Then they will start stopping by. What part of MI are you guys in? My step-daughter spends every summer with her mother up in Hersey- above Big Rapids. It is beautiful up there! The skies are soooooo blue compared to the smog here (near Atlanta). Hope to hear more about your family!

 

[Momto15]

Hello!
We are new here too and just started our pre trip report and my daughter had her big wish day yesterday! Nice to meet you.
Blessings
Sarah

 

[BuzznWoodysMom]

Hello!
We are new here too and just started our pre trip report and my daughter had her big wish day yesterday! Nice to meet you.
Blessings
Sarah

So nice to meet you too. Momto15 is a pretty intimidating username lol. Bless You! I read some of your pre-trip, humbling and heart-warming. Hope to "talk" more soon!

 

[BuzznWoodysMom]

Dad Mom Bonus son 11 J-6 (wish kid) A-3

I'm a stay at home, homeschooling mom. J (we'll call him that for now) was my first child. I was 25, pretty healthy, and had a fabulous labor (don't hate me lol, the next one was awful). J was born right on time with no complications and healthy,,,,,or so we thought. Shortly after birth his body temp kept dropping. They would put him in the warming bed, take him out, with the same results. Then when we tried to feed J he would vommit. He was taken into NICU for observation. Because of legal reasons I cannot give full details (but man would I love too) but will include as much as possible. This would be the beginning of our nightmare.

When he was about 8 hrs old I suspected he was having seizures. Iwas repeatedly told no and I was a new mom and just tired. I should mention I have epilepsy. Again many details I cannot go into, however I will say nearly 48 hrs later a CT was finally ordered. We are again told he's fine but has a small brain bleed and needs to be transferred to another hospital. We were not allowed to ride with him, they intubated him, gave us his room info, and said we would need to register him and then sign papers for more tests. We followed, all the while knowing this isn't right.

When we arrived at the new hospital, we did as we were told, went thru registration and were directed to the NICU. This day lives in my heart as if it were yesterday. When we arrived at the desk and gave our sons name, we were told " OH, he's already in surgery". Our reply was, No, sorry you have us confused with someone else. Again more details better left out, some language too. However, it was true.....he was in surgery.

They put us in a conference room, and the head of peds came in and proceded to tell us from a legal standpoint they did what was right blah blah blah. When we finally got her to understand that we had no idea what was going on, we had never left our sons side except for the transport ride to the hospital, showed her the paperwork and info we were given etc. she then explained that our sons condition was critical, and he may not make it. The small bleed, was a grade 4, and he was most definitley having seizures. My world ended and began that day.....

 

[BuzznWoodysMom]

You're doing it right! Just give everyone time to find you and get linked on the Wish Trip pre-trip report page. Then they will start stopping by. What part of MI are you guys in? My step-daughter spends every summer with her mother up in Hersey- above Big Rapids. It is beautiful up there! The skies are soooooo blue compared to the smog here (near Atlanta). Hope to hear more about your family!

Hello! Thanks for the welcome! We live in a tiny, rural town about 45 minutes north of Detroit. We used to travel to Cadilac to visit the In-laws when they lived there. Also, I've been to Atlanta, for a family reunion, some years ago, although all I really remember is a visit to the Coca-Cola factory and it was hot lol. Anywhere you could recommend to stop for the night? It's about 13 hrs into the 20 hr trip. Not counting a trillion potty breaks of course.

 

[xanphylus]

Hello! Thanks for the welcome! We live in a tiny, rural town about 45 minutes north of Detroit. We used to travel to Cadilac to visit the In-laws when they lived there. Also, I've been to Atlanta, for a family reunion, some years ago, although all I really remember is a visit to the Coca-Cola factory and it was hot lol. Anywhere you could recommend to stop for the night? It's about 13 hrs into the 20 hr trip. Not counting a trillion potty breaks of course.

Everyone always talks about stopping in Valdosta or near there I want to say. I have seen it on a bunch of regular trip reports (not the wish ones so much cause they usually fly). It's near the border and makes for a nice short drive in the morning- when everyone is really excited and wants to get there ASAP.

And yes, GA is very hot. Although, my daughter says it gets pretty hot up there too.... esp since her mom doesn't have a/c like we do. Her grandparents do, but they live over in Charlevoix and she only visits there a few times. It's so muggy down here though. Any ideas of when you guys are wanting to travel? It's finally starting to cool down a wee bit here, which is good. It only hit 90 today lol, but that is the hottest it will be all week.

 

[xanphylus]

Ohhhh I would be soooooo....... ok, I won't go there. I can't believe they did that to your poor kiddo. A mommy is usually never wrong and they should have listened to you much sooner. But, I know I am not saying anything that has not been said before, I am sure. Your kiddo should not have had to go through all that- poor little guy. How is he now? I know you mentioned he has another surgery coming up. Hope all goes well with that!

 

[BuzznWoodysMom]

Ohhhh I would be soooooo....... ok, I won't go there. I can't believe they did that to your poor kiddo. A mommy is usually never wrong and they should have listened to you much sooner. But, I know I am not saying anything that has not been said before, I am sure. Your kiddo should not have had to go through all that- poor little guy. How is he now? I know you mentioned he has another surgery coming up. Hope all goes well with that!

Thanks for the travel info, and I will post more as often as possible. I wonder, if Im the only one with children who have an almost allergic reaction when mommy touches the computer .

 

[BuzznWoodysMom]

We met with the surgeon while J was still in recovery, he explained that they evacuated a clot and blood, and did everything they could, but now they would have to figure out what was going on. An ICP moniter was placed and we waited. J stayed on life support for nearly three days. During this time we only left for shift change when we were required to step out. I was saddened to see how many babys were all alone......many had been there for weeks or months and familys had to work or take care of other children. So we dealt with our pain by decorating and buying things to help stimulate the other babies, im a big believer in the healing power of love. Anyway, during this time we were told a post-op MRI showed that the problem was an Arteriovenous Malformation in his brain.

To simplify, an AVM is basically a tangled mass of veins and arteries that can rupture. It is very rare, and while it is something you're born with, most dont rupture till the third or fourth decade of life. They can happen anywhere in your body but the most deadly is in the lungs, or brain.

We were shown the MRI, and I started researching....thats another way I deal, to plan the unplannable lol. We discussed all the treatment options, and were told by multiple Drs. and books that this is something that would not go away on its own and must be treated. We were also told that we would be in the hospital for months. Here comes Miracle 1.....we left the hospital 7 days later, when J was 9 days old.

I wish I could say things were great after that but then I wouldnt be here....

We returned to the hospital 5 times in the next 3 months thru emergency and once by helicopter /thats a story for another time) while we waited for J to grow for his upcoming tests. Finally at 6 months they repeated an MRI. The AVM that we were shown and were told would not go away on it's own was.....gone. Now of course, everyone said it was another miracle. I'm all for miracles, but as a mom who watched her baby seize for the last 6 months, well I was unsure.

Fast Forward a little, J's diagnoses are Cerebral Avm, Cerebral Palsy, Epilepsy, and Autism. His CP is mild, in fact we were told he shouldn't be able to sit up on his own, but made such progress he wouldnt even need braces.....Ha! Goes to show ya that Dr.s are only people with a different education. J has had to learn to walk 4 (yes 4) different times, has had 7 pairs of braces, 3 rounds of botox injections, serial casting 5 times, and finally Ortho surgery to release the muscles in his leg. All in all the surgery was awful but worth it, it was two years last week, and he's still running around.

As for the seizures, not so good....but i'll have to get to that later. thanks for reading along. Can't wait to read more too.

 

[BuzznWoodysMom]

J's seizures have never been controlled by any number of med combinations. And in the last few years they began to last longer and longer. After six 911 calls in 5 months, with seizures lasting nearly 30 minutes, difficulty breating, and episodes of Bells Palsy and Todds Paralysis, we knew something had to be done. I asked our neuro what other options do we have, and she wanted to send us to Cleaveland Clinic in Ohio. After many phone calls with the Clinic and Insurance, we determined it wasn't going to happen. So I scheduled appointments with some of Mi. top Dr.s.

We are now at U of M and so happy, we have the most amazing team of Drs a mommy could ask for. Every Dr we met with said surgey was his best chance. The seizures had already reached a dangerous and deadly level. Our new pediatric neuro is the one who made our referral for MAW. We discussed it at an appt. and one week later We recieved our package saying J had been approved for a wish. That was in early August, and we are anxious to move forward in the process!

 

[nesser1981]

Hello all! I was researching our MAW trip and came across disboards. This is my first forum so I wanted to apologize if I completly mess this up! So please bear with me as I try to navigate my way thru the forums and threads (and life) and abbreviations. I feel so clueless but you all seem like a patient and caring group, so I'll do my best! My wish kid is my 6 year old son, who has CP, Epilepsy, Autism, Stroke related to an AVM, and is prepping for brain surgery #2. I also have a 3 year old son with epilepsy, but he is doing well! And a "bonus son" who is thankfully healthy! Thanks for reading!

We also live in Michigan! Down south of Ann Arbor, DD goes to Mott @ U of M for her cancer treatments.

Can I ask you how long it has taken from when you got the "You Have Been Medically Approved Letter" to getting the actual dates for Disney?

DD got her approved letter on Saturday. We're all so excited! I bet you're going to have a wonderful trip!!

 

[Momto15]

Oh my word what your family had been thru!!! Prayers and blessings...I am reading your updates in shock and with great sadness for the way that you were treated at that hospital!!

 

[BuzznWoodysMom]

We also live in Michigan! Down south of Ann Arbor, DD goes to Mott @ U of M for her cancer treatments.

Can I ask you how long it has taken from when you got the "You Have Been Medically Approved Letter" to getting the actual dates for Disney?

DD got her approved letter on Saturday. We're all so excited! I bet you're going to have a wonderful trip!!

After a few weeks I contacted the office to see if they had received our paperwork, they had not. But asked what kind of wishes and timeframe we were interested in. We discussed some upcoming hospitalizations and surgeries, and decided on November. Im not sure if it's normal for things to work that fast or if it's because of our medical schedule. Last week we spoke again and finalized our dates and transportation (driving). Hoping to hear from our wish volunteers soon!

 

[threelittlebakers]

Thank you. It was nice for once for someone to listen to me. Its been tough with no one supporting behind me. I think the most i wanted was the support of my mother. For her to tell me that everything will be okay and that i can do this. I had to do that all on my own. Parents with healthy children have no idea how tough it is to be in our shoes. But i also believe what hurts us makes us stronger.

 

[threelittlebakers]

I just read your thread. I am sorry what you have been through. Now i know what you mean. Different diagnoses but the same treatment at hospitals. I am little familiar with seizures. Matthew has had two seizures but they were brought upon by a medication he once was taking. He also gets what look like a seizure but its a reaction he gets when he has a bad acid reflex episode. Who would of thought. He had really bad GERD but know he is medicated. But i know what seizures can do. I had to employees at my job. One who had a brother in his 40s who died when he was sleeping but he wasn't taking any of his meds and the other one who has a son but he is doing fine. I just see the pain in there eyes. I hope things do get better and i hope you have a great trip. If any questions just reply to my thread. It would be nice to talk to someone from time to time.

 

[BuzznWoodysMom]

Sorry to have been away for so long, but life keeps getting in the way. We have not met with anyone yet, but our local chapter sent us our paperwork and a box of gifts for the boys. They were so excited. We filled out and returned all paperwork, we have our dates: 9-4-11 pick up rental vehicle, 9-5 leave out early and stop for the night prob in Georgia, but we'll see how things go, 9-6 arrive at GKTW. Im not really sure how we'll spend the week there, I have a dozen diff ideas but I'm trying to remain calm and go with the flow lol. Not usually the way I approach life, but nows a great time to learn. We will head for home on 9-12 . And we are anxiously awaiting our next phone call or mailing to see what, if anything we need to do next. Our MAW chapter also arranged for a stroller rental thru Orlando Strollers, a double so we can keep the smaller boys together when they get tired and to also use as a wheelchair for J.

Thanks for reading!

 

[starienite]

They put us in a conference room, and the head of peds came in and proceded to tell us from a legal standpoint they did what was right blah blah blah. When we finally got her to understand that we had no idea what was going on, we had never left our sons side except for the transport ride to the hospital, showed her the paperwork and info we were given etc. she then explained that our sons condition was critical, and he may not make it. The small bleed, was a grade 4, and he was most definitley having seizures. My world ended and began that day.....

I completey understand that feeling. In the first days it was like it had been forever and only yesterday at the same time. I can't imagine going through that with a child that young. I completely lost it when the ER doc told me he had an 80% chance at death. I had to call my parents to go to the other hospital. I needed someone to be there for him if was going to die and we were still on the freeway. I was been about 9 months since his rupture, but not AVM free yet.