Wednesday, October 31, 2012


I will write a post with lots of photos and a full account of Max's great birthday tomorrow.  There are a few more things I needed to get photos of, and need to get copies of photos and videos from everyone who took them tonight.

So tonight, I'm going to share Max's birthday story...the short version anyway.

I've been asked several times this week about Max's birthday story.  It's something that I always enjoy telling.  And this year, I noticed a story that Max really enjoyed listening to.  So often, we are telling the stories of how he nearly didn't make it...or how he pulled through a terrible illness.  I think we don't tell the story of how he entered our world enough.  It's a much happier story.

Max took 26 hours to meet us once labor started.


On his due date, October 29, the doctor wanted me to do a stress test to see how the baby was doing.  It seemed like every few minutes the little graph would get funny, so she decided it was time to induce.  I checked in the next evening at 8:00pm, and by 9:00pm I was put on the medicine to start the process.

I was given a pill to help me sleep, and rested lightly through the night.  When I woke up the next morning, Halloween morning, I was ready for our baby to come!  But, I was nowhere ready.  The nurses had me walking laps around the maternity ward.  I walked and walked and walked.  I had some pains, but nothing serious.

My doctor was dressed up like a Star Trek character.  And it was always a little difficult to take her seriously when she came in to check me dressed up.  It was after all, Halloween, so it made me chuckle.

I watched tv, and watched the weather turn from sunny and warm, to grey and icy.

By evening, the doctor decided it was time to break my water, to move things along more quickly.  I received an epidural and slept for a while.  I woke up to pretty intense labor pains, and Steve watching the monitor.  I asked him what he was doing and he said, you're having a contraction. kidding!  I think he must have been sitting there watching the contractions happen by the data coming across the monitor.

At this point, the doctor checked and I was still not dilated enough to have the baby.  When I was at 5cm, she said we had about an hour left before we would need to do a C-Section, because it had been so long since my water broke.

That was at about 9:00pm...I begged my body to take charge and have that baby naturally!  A C-Section would mean surgery...and it would also mean having a November baby...not a Halloween baby!

Something clicked, and an hour later I was pushing.  I don't remember it being terribly painful...just really uncomfortable.  Steve and my mom were there to help me through it.  And at 10:57pm, Steve announced, "We have our's a boy."

He was quiet when he was born.  They took him straight over to the warmer and put oxygen near him. They checked him out and found he was fine...just quiet.


I got to hold him for the first time, and wondered aloud, "Whose nose do you have?", my mom answered, it's his nose.  The doctor wanted to take him back to give him a closer look, and to get his first bath.

Steve went with him and gave him his first bath.  I got cleaned up and got incredibly sick more than once.  Once we all got cleaned up, around midnight, he was brought back in to sleep in our room.


That photo may well be the most unflattering photo of myself, but I love it.  I look at that photo and I see, "you and me kid...we did it together...from the beginning".

He slept in our room that night, and I hardly slept a wink.  I kept getting up and looking at him, touching him, holding him.  My very own.  My Maximilian.

Monday, October 29, 2012

The Great Pumpkins...

Most years we go out to the pumpkin patch to get pumpkins for carving.  The past couple of years, it has gotten increasingly difficult to take Max in his wheelchair, so this year, we did things easier by going to the grocery store to buy pumpkins, and take photos on the front porch!

Cousin Addie was so excited to have her pumpkin carved that we started with photos then chose which pumpkins the kids wanted for carving.

Addie directed where each pumpkin should go.


And Abbey jumped in for her photo too...


Then Addie and Abbey surrounded Max with pumpkins...






Then we got to business of carving pumpkins.   Addie wanted a unicorn, Max got Batman, and Abbey did a Mr. Bones...












Yellow Leaves...

It's birthday week around here! Max's birthday is on Wednesday, also Halloween!  

Since it is mid-week this year, I'm not sure that we'll get to his favorite park on his birthday, so we took advantage of a beautiful Saturday afternoon to take him for a long walk around the pond.  One of the simple pleasures Max has taught us to enjoy.  

Along the way, we found a couple of trees with yellow leaves remaining, since the snow last week knocked most of them off.  

Get ready for loads of photos...all taken with my iPhone camera because I forgot the nice camera at home.  Good thing we're surrounded by beauty here!  










Wednesday, October 24, 2012


Today, after music therapy, Max's music therapist Ms. Laura presented Max with an award.  When it struck me it was his first earned award, tears pricked at my eyes.  It says, "Good Work Max Keep It Up" presented by Ms. Laura.

Max was pretty proud of his award.  Especially as she told him why he was getting the award.  Because he works so hard, even if he's tired, or not feeling well, he always does good work in music.  He even blew her a few kisses.  Such a little sweetheart.


We had to hurry to school time as soon as music was finished, and Max wanted to take his award into his school room with him.  When his teacher came in, she saw Max's award and congratulated him on receiving it.  Again, he was proud!

It was such a simple thoughtful act of kindness from his music therapist. And, we reached another first today, a week before his 9th birthday, Max received his first award!

Tuesday, October 23, 2012

A little catch-up...

I've started a blog here for the past few days, but then get distracted, or Max has another hour of school, or therapy to do and I end up closing the page at the end of the night, committed to write a blog the next day.

We're definitely in the busy season around here.  We're wrapping up doctor visits, before cold and flu season hits.  We are soaking up the last rays of warm sunshine before the snow comes, and all the leaves fall to the ground.

Max is excited for his birthday next week, and so are we!  He will be 9 years old next Wednesday, on Halloween!

All that to say...we are still here...just keeping busy outside of the computer screen!

I'll leave you with a photo of Max in front of the colorful bushes the other day on our walk.  He didn't want to look up in the camera, because of the sunlight.

His cousin in Oklahoma sent him an awesome letter and picture she colored for him for Halloween.

Max is back to eating his blended food instead of that stinky formula.  He's so excited to eat his fruits and veggies, and will be choosing his birthday dinner and dessert soon I hope.  So far, he's just told me "I'm not up for this right now" when I ask.

Speaking of using his computer to talk, he's really been practicing with his talker for school.  School is finally getting into a groove, and he'll be using it more and more with his classmates in the upcoming weeks.  He just finished The Mouse And The Motorcycle with his class last week over video chats.  The other day he was really REALLY ready to read and for his teacher to call.

(His tummy was acting a little rumbly, so he told me his stomach was hurting, then he wanted to play on the computer to call his class.)

(Thankfully they called soon after this!)

I'll have a lot more to update next week, when it's Max's birthday week!!  Or maybe before.  Now I am going to fall exhausted into bed!

Monday, October 15, 2012

Baby Loss Awareness...

When I went back to work after a couple of weeks off following the miscarriage of my first baby, a co-worker tried to help me feel better by saying, "It's much more common than you hear about, 1 in 4 pregnancies will end in miscarriage.".  She got her coffee, and went down the hall to her office.  As far as I was concerned, I was the 1 in that 4, and didn't care much about statistics.

Our first baby had just about made it through the first tri-mester.  We were excited to tell the whole family, and had traveled back to see them all for the 4th of July.  I wore a tshirt with a pink and blue megaphone on it proclaiming "I'm Pregnant!".  We told them all at a big party full of fireworks and excitement.

The next morning, I woke up with some cramps and found I was bleeding when I went to the bathroom.  We went across the street to the hospital I as born in, where I was told I had had a spontaneous abortion.  

Within 24 hours, I had told my entire family we were going to have a baby,  then that we had lost that baby.  Quite a shock for us all.

Once we were back in Colorado, I went to my doctor, where it was confirmed that the baby did not live, and my body was holding onto it.  The doctor did an ultrasound, and said I needed to do a procedure called an D&E, or dilation and evacuation in order to "clean out the womb".

I just wanted to get it over with.  I had already started to grieve the loss of the baby I was so excited about, but it was all such a whirlwind of events.

After the D&E procedure, I went home on a hot July afternoon and rested.  I slept, and when I woke up, went outside to call my Grandma since it was her birthday.  She offered her support by saying, maybe it was for the better, maybe there was something "wrong" with the baby.  I think now of the preparation those words were for me with Max.  I told her I wouldn't have cared if there was anything wrong with it.  I would have loved it anyway.

As the days and weeks went on, I felt blue.  I didn't know anyone else who had lost a baby. I knew of aunts that had, but somehow it didn't seem the same.  Funny how now I can see they would have been a good shoulder to cry on. But, in that time, I just felt alone.

We have a pretty good sense now that there was indeed something "wrong" with the baby.  More than likely, he or she had the same metabolic disease that Max has.  Perhaps there was more damage from the disease, who knows.  We will never know.

October 15th is Baby Loss and Miscarriage Awareness Day. Max's blog has always been a place for us to share our journey, in hopes that someone else would see that they aren't alone.   Today, I remember those short weeks I had being pregnant for the first time.  And I think of my many friends who have had miscarriages, still-born babies, and babies who have died within days of being born.  We're all around...and we're not alone.  I think the reason for awareness days like this one, is really to let others know that they are not alone in the journey.    So today, we light a candle in memory of baby #1, and for all the mothers who had angels instead of babies.

Tuesday, October 2, 2012

Tubie Changes...

Max has been on the move.


He started in his yellow chair, and scooted himself out to his beanbag chair.  And I let him.  When you have a body like Max does, there are few things you can do on your own.  So, we pad his area, and let him go for it.  Sometimes, he flops over...but he's safe.  And we're always close by.

He got down from the beanbag, to the floor.

Then turned in circles for about an hour.

He does this in his "free time".  Outside of his therapies and school time, I just let him play.  I think of it as his running around time.  Recess.

Today, he had me running around.  Starting first thing this morning!

Being on continuous feeds through the night and day, he's been having a lot more diapers through the night...and a lot more leaks.  Even with the bed pads, I'm having to change him, his sheets, and clean him multiple times by morning.

This morning, it was a bit excessive.  I was on his third linen change, and about to give him another wipe-down bath, when George decided to help, as best he could.



I let George and Max have their "bath time" and went to take the linens off Max's bed and get his soapy water ready for a real bath, since George had given him such a good primer bath.

When I came back into the living room, George had done a little too much cleaning of Max, by taking the tape off of his GJ button extension.  In doing so, he had twisted the already twisted GJ tube.  I had to call the hospital and talk with several nurses, until I got the right one, in the right clinic, who agreed it needed to be taken out, and I could do it at home.

I stayed on the phone with the surgery nurse while I took out the GJ tube, and replaced the G tube.

It was very quick, very clean, and Max never fussed once.  I have replaced the G tube button plenty of times in the past 4 years, but not this GJ button.  It was HUGE!  I didn't remember it being so large when they put it in him in the hospital.  I must have not been paying attention.  I don't especially like watching xrays...they kind of freak me out.  So, I think I was paying attention to Max while they were putting it in.

(All of that was inside of him.  It went in through the stoma in his abdomen, then into the stomach and down into his small intestine.  It had become twisted up into his stomach.  No wonder he was so fussy on Friday night!)

This is the comparison, the long tube is the  GJ Tube...the small tube is the Gtube button.

He's been much happier today, and a lot less gassy and fussy!  Now he's eating 24/7 into the Gtube, and we'll keep on with our schedule of getting him to bolus feeds, then back to his blended diet.

It's always exciting around here!