Yesterday a story ran front page in the WV statewide newspaper regarding Mighty Max and the situation (the involvement or lack thereof) with his father, who serves as a state senator in WV. There was a large photo of Max...the adorable photo of him in the bathtub looking at me. My main point in the article was that we simply want what is fair and we should not be punished financially because I cannot work since I am Max's full time caregiver.
Well the response from people throughout West Virginia for me and Max has been so overwhelming...such love and support from complete strangers! Thank you, thank you!
I was really hoping we were not going to fight this issue out in the media, and actually we were court ordered not to speak with the media. I have denied multiple requests from reporters since our separation last year...several have called wanting to know what happened and wanting the "dirt" on my soon to be ex. As much as I would love for people to know the truth, I just wasn't sure if I wanted to make this horrible situation any more public or crazy.
However, my soon to be ex talked with a reporter earlier this week and therefore I had to as well. This was all happening the day of our crazy travel back East! In between flights I was talking with the reporter...as if the day wasn't stressful enough already.
Anyway, the long and short of it is that I have been overwhelmed with the support Max and I have received and I am deeply grateful. The divorce hearing is next week and Max's "fan club" is providing us a much needed emotional boost. As I said to the reporter, I am going to fight tooth and nail to get everything Maxwell needs and deserves...and next week we certainly have quite a fight ahead of us.
Again, thank you everyone...and please, please keep up your prayers for Max's health, happiness and development. Mighty Max is certainly making progress, but he has a very, very long way to go.
Thursday, June 01, 2006
Wednesday, May 31, 2006
WHAT AN ADVENTURE, part 1
Wow, what a day...what a day! I sit here pretty much speechless about how to describe our day of traveling! ABSOLUTELY CRAZY!!! :) And I am only smiling about it now because it is over! :)
Unless absolutely necessary, I definitely don't recommend traveling with a special needs kiddo on oxygen, monitors and a feeding tube...a lot, a lot, A LOT of work and confusion. I knew it would be an intense day, but little did I realize!
It started with the final packing yesterday morning and trying to fit everything into the car. I kept remembering more and more medical supplies we needed. Max has never spent a night away from our home or the hospital, so I kept remembering all these random things we would need. With all the suitcases and boxes, it looked like we were moving!
We get to the airport on time and feeling good about being fairly prepared. After checking in, we have to get into a "special services" line to pay for the oxygen. OVER AN HOUR LATER, we finally get through the line and then we have the security to get through. Hmm...that was a little adventure in itself with all of the medical devices we had with us!
By this point, we are really worried that we are going to miss our flight so Eliz and I are running through the airport with the babies and lots of carryons. I needed a lot of his med supplies on board...just in case. We get near our gate and our names are called over the loud speaker, so we pick up the pace even quicker.
We get on board...the very last ones on the flight (not our fault but still terribly embarrassing!) and then we sit down and I look at the oxygen device. It is not at all what we ordered and the flight attendants were very confused on what to do. They were supposed to have a mask that I would use for Maxwell as a "blow by" since the meter flow could not be lowered to his level. However instead they gave me an adult size cannula. I had coordinated this all beforehand with numerous phone calls with the doctor and the airline's medical desk, so of course I was very disappointed that the instructions had not been followed. So there is this major commotion and the flight is delayed and they are bringing service techs on board to help fix the problem.
Can you imagine that feeling of hundreds and hundreds of people (completely booked flight!) knowing that YOU are the one holding up their flight? Yikes! I was very uneasy about this and even more uneasy that we didn't have the necessary O2 delivery system for Max.
During this time it is announced to the passengers that a little baby (they actually said he was three months old...I think they assumed because he is so small, he must still be a newbie!) was having a serious medical issue and we would be delayed for some time. Felt like everyone's eyes were on us, which I'm sure they were. FINALLY after at least a 30 minute delay (felt like hours!), we took off. The entire trip I had to hold this cannula right beside his nose and he either wanted to suck on it or push it away. It was quite a task. Then I attempted to feed him (through his Gtube) and it was like I was some mad scientist. I have several of his meds, his syringes, the tubing, etc. all laid out on the little fold out tray and trying to not make it so obvious, but that was nearly impossible. Everyone was staring...like what in the world???
I soooo wanted Max to take a quick nap so that I could too (only got a few hours of sleep the night before and was exhausted) but then I remembered sleeping was not an option because I had to hold the cannula! Oh well.
Ok Max looks like he is getting a bit restless so off to play and perhaps we will work in a little tummy time! After all that sitting yesterday, he needs to move his muscles!
I will write about the second leg of the trip later...this post is long enough already and my fingers are tired! But let me tell ya, the second flight was even worse. Yikes!
Thanks everyone for your well wishes on our journey...we definitely needed them! :)
Unless absolutely necessary, I definitely don't recommend traveling with a special needs kiddo on oxygen, monitors and a feeding tube...a lot, a lot, A LOT of work and confusion. I knew it would be an intense day, but little did I realize!
It started with the final packing yesterday morning and trying to fit everything into the car. I kept remembering more and more medical supplies we needed. Max has never spent a night away from our home or the hospital, so I kept remembering all these random things we would need. With all the suitcases and boxes, it looked like we were moving!
We get to the airport on time and feeling good about being fairly prepared. After checking in, we have to get into a "special services" line to pay for the oxygen. OVER AN HOUR LATER, we finally get through the line and then we have the security to get through. Hmm...that was a little adventure in itself with all of the medical devices we had with us!
By this point, we are really worried that we are going to miss our flight so Eliz and I are running through the airport with the babies and lots of carryons. I needed a lot of his med supplies on board...just in case. We get near our gate and our names are called over the loud speaker, so we pick up the pace even quicker.
We get on board...the very last ones on the flight (not our fault but still terribly embarrassing!) and then we sit down and I look at the oxygen device. It is not at all what we ordered and the flight attendants were very confused on what to do. They were supposed to have a mask that I would use for Maxwell as a "blow by" since the meter flow could not be lowered to his level. However instead they gave me an adult size cannula. I had coordinated this all beforehand with numerous phone calls with the doctor and the airline's medical desk, so of course I was very disappointed that the instructions had not been followed. So there is this major commotion and the flight is delayed and they are bringing service techs on board to help fix the problem.
Can you imagine that feeling of hundreds and hundreds of people (completely booked flight!) knowing that YOU are the one holding up their flight? Yikes! I was very uneasy about this and even more uneasy that we didn't have the necessary O2 delivery system for Max.
During this time it is announced to the passengers that a little baby (they actually said he was three months old...I think they assumed because he is so small, he must still be a newbie!) was having a serious medical issue and we would be delayed for some time. Felt like everyone's eyes were on us, which I'm sure they were. FINALLY after at least a 30 minute delay (felt like hours!), we took off. The entire trip I had to hold this cannula right beside his nose and he either wanted to suck on it or push it away. It was quite a task. Then I attempted to feed him (through his Gtube) and it was like I was some mad scientist. I have several of his meds, his syringes, the tubing, etc. all laid out on the little fold out tray and trying to not make it so obvious, but that was nearly impossible. Everyone was staring...like what in the world???
I soooo wanted Max to take a quick nap so that I could too (only got a few hours of sleep the night before and was exhausted) but then I remembered sleeping was not an option because I had to hold the cannula! Oh well.
*to be continued*
Ok Max looks like he is getting a bit restless so off to play and perhaps we will work in a little tummy time! After all that sitting yesterday, he needs to move his muscles!
I will write about the second leg of the trip later...this post is long enough already and my fingers are tired! But let me tell ya, the second flight was even worse. Yikes!
Thanks everyone for your well wishes on our journey...we definitely needed them! :)
P.S. A quick note to my fellow coffee addicts in the Pacific NW: Starbucks has finally come to Wheeling! Eliz and I were soooo happy to hear the good news. Always a fun treat after a long night.
Monday, May 29, 2006
A FEW QUICK PHOTOS!
You know it must have been an early morning if your baby is already taking a nap at 8 am! And notice the cannula outside of his nose again! Silly Max! :)A special thank you to our minister's family (in Wheeling) for this beautiful prayer shawl...we use it all the time as a blanket!!!
We absolutely LOVE bathtime! And just how precious is this look???Yes, I know his hair is out of control! :) I gave him another cut this weekend. His body may have a difficult time growing, but his beautiful hair certainly doesn't share that problem!
Jackson has officially taken over as President of the Mighty Maxwell Fan Club. He absolutely ADORES him...so wonderful to see! (Notice how strong and grown up Max looks sitting in his Bumbo seat!!!)
