MY ONE YEAR ANNIVERSARY! Yep I have officially been home one entire year from the hospital! WOW! :)
Last year at this time I was incredibly fragile. My mom was warned repeatedly "this kid has terrible lungs, he is on thin ice and when he starts to crack, he will go down quickly...very quickly." Yikes, that sure made her nervous! Mom says her emotions (happiness & fear) from that day are still very fresh.
But look at me now...what a difference a year makes! YAY FOR ME! YAY FOR ME! YAY FOR ME! :)
*We were hoping to have a fun, simple day to celebrate this amazing accomplishment, but my heart was going super low again last night. Mom paged the cardiologist at midnight and the nurse kept a close eye on me. We are going to do a halter monitor...AGAIN...today. Oh well! We will still celebrate my special anniversary, just with a few extra wires! :)
Thursday, December 21, 2006
OVERWHELMED BUT TRULY THANKFUL
WOW, WOW, WOW! :)
I have absolutely been bombarded with emails from international Max's fan club. It's truly amazing to read how his story has inspired so many people...thank you, thank you for being so honest and sharing how much you adore Maxwell. Many of you wrote "I know you are going to think I'm weird..." or "I know we have never met, but I absolutely love you guys..." or "Max has changed my view on the world..."
I certainly know how much Maxwell has changed me, but to read about his impact on complete strangers is truly incredible...more than I can adequately express in words. He truly was sent here for a reason...just the way he is.
While Max and his amazing special friends are certainly "high maintenance" sometimes, they are changing this world...person by person...for the better. They have the unique ability to open our hearts to the important things in life and teach us to appreciate each and every moment.
On the way to Children's yesterday, I was listening to a Christian talk show and there was a segment on special needs children and their positive impact on friends and family members. It was exactly the message I needed to hear that day...and then coming home and reading the hundreds and hundreds of emails about your love for Max was the icing on the cake. Thank you again for sharing your experiences with Mighty Max's journey.
And also, please accept my apologies that I have not yet been able to add everyone to the invite list. I am trying to sort through the names and add them into the website whenever I get a free moment.
Perhaps I will post a message or two on this public blog while I am still transitioning over to the more private one...
I have absolutely been bombarded with emails from international Max's fan club. It's truly amazing to read how his story has inspired so many people...thank you, thank you for being so honest and sharing how much you adore Maxwell. Many of you wrote "I know you are going to think I'm weird..." or "I know we have never met, but I absolutely love you guys..." or "Max has changed my view on the world..."
I certainly know how much Maxwell has changed me, but to read about his impact on complete strangers is truly incredible...more than I can adequately express in words. He truly was sent here for a reason...just the way he is.
While Max and his amazing special friends are certainly "high maintenance" sometimes, they are changing this world...person by person...for the better. They have the unique ability to open our hearts to the important things in life and teach us to appreciate each and every moment.
On the way to Children's yesterday, I was listening to a Christian talk show and there was a segment on special needs children and their positive impact on friends and family members. It was exactly the message I needed to hear that day...and then coming home and reading the hundreds and hundreds of emails about your love for Max was the icing on the cake. Thank you again for sharing your experiences with Mighty Max's journey.
And also, please accept my apologies that I have not yet been able to add everyone to the invite list. I am trying to sort through the names and add them into the website whenever I get a free moment.
Perhaps I will post a message or two on this public blog while I am still transitioning over to the more private one...
Monday, December 18, 2006
LONG OVERDUE UPDATE
Our nurse came down with the yucky stomach virus that Maxwell has, so I am "on duty" tonight. Unfortunately Max's silly heart is playing tricks on me...major bradycardia. His heart rate is actually lower than ever, but he is managing to keep his sats up with oxygen. So I don't think an ER trip is necessary, but close monitoring is. This kiddo sure knows how to keep his mommy on her toes!
Max's Gtube also failed tonight...huge hole in the balloon that keeps it in his stomach. Unfortunately this was his backup Gtube, and the equipment company didn't have any extras in the right size. The problem is that you have to keep something in the hole or it will close quickly. So I have taped it down like crazy and hopefully that will hold it until we get to the hospital tomorrow morning. Additionally he is having major issues with his feeding (coming out both ends if you know what I mean) and is only able to tolerate Pedialyte.
So all in all...Max is having one of his more "high maintenance" days...to put it lightly. :)
Since I have to stay awake anyway, I thought I would finally respond to everyone's emails, posts and phone calls. Thank you so very much for your concern and your interest. The number of people missing their Mighty Max "fix" is incredible. It's amazing how many people have fallen in love with him via the internet. He certainly is one loved, adored and cherished lil' boy!
The reason we haven't posted is two fold.
First, we have been quite busy with Max's ongoing stomach bug, numerous therapy/doctor appointments, and of course holiday preparations. (I was on the hunt for the perfect activity table for him and I finally found it...YAY! Soooo excited! But now it's taking all my willpower to wait until Christmas!)
Second, I have been wanting to do something different with our blog and I just needed to set some time aside to make that happen. I am setting up an "invitation only" site for our friends and family. I will keep you posted. In the meantime, send me your email address (amysmckinley@aol.com) if I haven't already invited you and you wish to be included. There are thousands of people who regularly read this blog now so the list can be a bit overwhelming. Sorry if I have overlooked your address. :)
Why do I want to make our site more private? Well, the journey of a special needs child and a single mom is an emotional roller coaster. When discussing the photos from our Christmas card exchange, I think a mom on our CHARGE listserv recently expressed it best..."all our CHARGE families have a similar wise, worn, loving look - the look of love cracked open, laid vulnerable and held with great reverence and gratitude."
It's that "cracked open, laid vulnerable" feeling that pushed me to start a more private blog. I only want our friends and family who love us and are genuinely interested in Max's well being to have access to our daily lives, our joys and sorrows, our accomplishments and frustrations...and all the in between.
Well I best run for now. We have clinic visits tomorrow at Children's (hoping they don't keep us overnight) and need to get us packed up and ready to go. I'll keep you posted on our new site. :)
Max's Gtube also failed tonight...huge hole in the balloon that keeps it in his stomach. Unfortunately this was his backup Gtube, and the equipment company didn't have any extras in the right size. The problem is that you have to keep something in the hole or it will close quickly. So I have taped it down like crazy and hopefully that will hold it until we get to the hospital tomorrow morning. Additionally he is having major issues with his feeding (coming out both ends if you know what I mean) and is only able to tolerate Pedialyte.
So all in all...Max is having one of his more "high maintenance" days...to put it lightly. :)
Since I have to stay awake anyway, I thought I would finally respond to everyone's emails, posts and phone calls. Thank you so very much for your concern and your interest. The number of people missing their Mighty Max "fix" is incredible. It's amazing how many people have fallen in love with him via the internet. He certainly is one loved, adored and cherished lil' boy!
The reason we haven't posted is two fold.
First, we have been quite busy with Max's ongoing stomach bug, numerous therapy/doctor appointments, and of course holiday preparations. (I was on the hunt for the perfect activity table for him and I finally found it...YAY! Soooo excited! But now it's taking all my willpower to wait until Christmas!)
Second, I have been wanting to do something different with our blog and I just needed to set some time aside to make that happen. I am setting up an "invitation only" site for our friends and family. I will keep you posted. In the meantime, send me your email address (amysmckinley@aol.com) if I haven't already invited you and you wish to be included. There are thousands of people who regularly read this blog now so the list can be a bit overwhelming. Sorry if I have overlooked your address. :)
Why do I want to make our site more private? Well, the journey of a special needs child and a single mom is an emotional roller coaster. When discussing the photos from our Christmas card exchange, I think a mom on our CHARGE listserv recently expressed it best..."all our CHARGE families have a similar wise, worn, loving look - the look of love cracked open, laid vulnerable and held with great reverence and gratitude."
It's that "cracked open, laid vulnerable" feeling that pushed me to start a more private blog. I only want our friends and family who love us and are genuinely interested in Max's well being to have access to our daily lives, our joys and sorrows, our accomplishments and frustrations...and all the in between.
Well I best run for now. We have clinic visits tomorrow at Children's (hoping they don't keep us overnight) and need to get us packed up and ready to go. I'll keep you posted on our new site. :)
