*there's his first parade and tailgate party

Will attended his first Homecoming at MTSU last weekend!

Band of Blue

The Color Guard in front of the President's House.

One of the floats

 

Men painted blue.

More men painted blue.

The parade route.

Mommy and Will

Will's first actual football game will have to wait for the future, 

but he did get to enjoy a good tailgating experience with friends!

Playing in the Pack 'n Play

Our friend Ella models the evolution of the traditional Homecoming outfit.

The stadium and more parade entries.

 

Mommy, Daddy, and Will

Daddy, Uncle Matt, and Will

Fun pictures made with Lightning the mascot, as well as Katy, Karsyn, Bethany, and Ella at the Alumni House.

*there's the Uncles

Napping with Uncle Eric in January.

Cuddling with Uncle Matt in October.

*there's things we won't miss

I'm happy to update everyone by saying Will is feeling better now. He and I both were sick during the past week but it is so nice to see him happy and crawling around again. Not only is he back to himself, he is better than ever. Great mood, less spitting up, eating a little from a spoon, making more noises, getting closer to talking, and crawling, crawling, crawling!

As we approach Will's 1st birthday, I have been thinking about these things that we no longer worry about.

*Spells
*Turning blue
*Apnea monitor

*Wires keeping us from walking around while we hold him
*Trips to the ER
*The NG tube being in the wrong place and causing aspiration
*When will his OHS be scheduled
*Weaning off the ventilator
*Visiting the hospital (We did count the mileage on our taxes though.)
*Getting clean clothes to the hospital
*Washing our hands over and over with that abrasive hospital hand soap


It's so nice to have those things out of our way!

Things we hope to add to the list soon:
*Surgeries
*Medicines
*Feeding tube
*Feeding pump
*Pole that holds the feeding pump
(Stubbing your toe on it is really painful.)
*Continuous night feeds
*Phone calls with the nutritionist about feedings
*Thinking about tube feedings
*Anything related to anyone's feeding tube ever :)

*there's a crawler!

Pictures captured on my phone on October 7th.

He moved from the toy pallet across the room going backwards.

 

Then he made a sharp turn, went under this chair, 

and backed himself behind this plant where he hit a dead end.

Then he looked up and grunted at me as if to say
"What do I do now?!?!".

He has since crawled forward too!

And here is sick Will with a flushed face 

cuddling in bed with me this week.

 

We are so glad he's starting to feel better!

*there's the approach of birthday ONE

Cradle Song  

  
What does little birdie say
In her nest at peep of day?
Let me fly, says little birdie,
Mother, let me fly away.
Birdie, rest a little longer,
Till thy little wings are stronger.
So she rests a little longer,
Then she flies away.

What does little baby say,
In her bed at peep of day?
Baby says, like little birdie,
Let me rise and fly away.
Baby, sleep a little longer,
Till thy little limbs are stronger.
If she sleeps a little longer,
Baby too shall fly away. 

Lord Alfred Tennyson

Baby, sleep a little longer

*there's help on the internet

Will's life story

born with medical difficulties,
special needs in early childhood,
typical kid,
whatever kind of adult he wants to be.

But sometimes Will has poor weight gaining phases or spitty-uppy days (thats what we call them) or it hits us that he still doesn't eat. Most of the time we're optimistic and happy. But sometimes we are overwhelmed with it all.

 Waiting to see the pediatrician in August.

Not everyone thinks reading about upsetting things on the internet is a good idea. In the early days the doctors would warn us against doing internet research for the various diagnoses they were ruling out for Will. One doctor refused to give Chris the spelling of a syndrome for which a genetics test was being done. Chris figured it out anyway (Smith-Lemli-Opitz) and what we read was worrisome. While we waited on results we tried to remember that it is a rare condition that they had no suspicions he had, but is sometimes linked to TOF just like DiGeorge Syndrome, which he also didn't have. The phrase "ruling out" can remove a lot of pressure for me.

Sometimes avoiding internet research is the right advice to follow, but the majority of the time I am so grateful for the comforting information I find. For example, poems by heart moms. So many of them mention feeding problems. That has normalized something that feels really abnormal. So if you're smart about it and discard the things you read online that aren't useful (or factual) it can really help with fear and worry. Here is an example.

I have been coming across this little essay on the internet since before Will was born. It helps every time I see it and I wanted to put it here. When I read all of this in the future I will remember how 2009 and 2010 wasn't always in the past tense. The other day I had a flashback about Will spending months with a tube taped to his face and was shocked. How could I have already forgotten that?!?! Luckily there will be nothing but tube-less face days from now on.

Will is not disabled, but special needs is a fair term to use. His daycare staffed with nurses and our insurance company call him medically fragile. I'm aware that his special needs are temporary. Even if you don't think this applies to us at all, it makes me feel better.

 Welcome To Holland

by
Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this.....

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland." "Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."


But there's been a change in the flight plan. They've landed in Holland and there you must stay.


The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.


So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.


It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.


But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."


And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.


But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.


c1987 by Emily Perl Kingsley. All rights reserved

 I know this is contradicting the metaphor, 

but how can I pass up this opportunity to show this favorite 
picture of Will's Daddy in Italy? 

 

Back to a more serious note. Do you recall me mentioning that a baby with TOF passed away recently? He was actually one of nine CHD babies that did not make it through that week. See more here.

*there's another healing period

Thanks so much to everyone that has checked in to see how Will is doing!

It has been a rough few days. We thought we had already done the hard stuff so this would be easy. We were wrong! It has been a difficult recovery, mostly because we were unprepared about what to expect after he came home. We were tricked by our past experiences. Will's G tube surgery was pretty minor, but he spent the night in the hospital. (See *there's a beautiful face on July 9th.) So when the doctor said that he would go home the same day as this one, I think we mistakenly ranked it as the least of all that we will do. In actuality, it went something like this:
heart surgery = days in intensive care,
G tube surgery = one night in the hospital,
urology surgery = something that has nothing to do with either of those experiences.

I'm vague about this because it is after all, urology. Chris and I talked about how much to tell people, if anything. If it will help another family cope please email me and I will be happy to prep you with our experience. Thankfully other families have done the same for us. But out of respect for Will's privacy, details will be reserved for him. I don't think I've mentioned to our internet readers that I get this blog printed into books periodically. First it was to send to relatives that want to know about him but don't use the internet. I also get a copy for Will to keep.

 

 I highly recommend using Blurb for this.

Will: when you are finished reading this please put the book back on the shelf and come find one of us. If we haven't yet, we'll tell you what you need to know.

It is not fun to think about having to do this again. This time the actual surgery went well, but the nature of what they do is that it happens one step at a time. And sort of like heart surgery, they cannot always predict what they will be able to accomplish each time until they get started. Also there is a high rate of complications so they sometimes add surgeries for that reason. After he finished on Wednesday the doctor said , "Be prepared for several more surgeries. Three, four, five...several." That was the hardest thing I have had to hear in a long time.

The good news is that we now know things that will help make it easier next time. I am holding out hope for that because some things don't change - babies can't talk and tell you what they are feeling. For example, their patterns vary anyway so one never knows...is he sleeping less because his growth spurt is over? or is he sleeping less because he's in pain? or is he sleeping less because of the medicines? One could pester their doctor with phone calls, gorge themselves on junk food, neglect their dog, and get cranky with their spouse in a situation like that. Oh wait - that was us!

Speaking of medicines, here was our schedule for the first couple of days at home:

 

So now that I got all of that out of the way, lets just look at cute pictures of Will!

*there's loss

I was recently writing about how I wasn't sure I wanted to hang out in the online blogging CHD world. At the time I wasn't even thinking about this -  the reality of CHDs is that they cause death. A baby with TOF died this week. He was less than one month old.

Blog after blog I checked had posts of sadness about the loss of Baby Ewan. The online CHD community is grieving today and it's hard to ignore.

To help you understand why some babies with TOF make it and some don't, Ewan's mother gives an excellent description of the range of severity the TOF diagnosis can have. See her October 5th post.

And then I saw this on a blog I've mentioned before. I don't know how to link to the October 3rd post individually so I included my favorite part here:

thump thump

This time, she wanted to sleep in my arms
on my chest
squishing on her binky in my ear
breathing on my neck
relaxing into my arms
It was quiet.
Just us.

And then I felt it.

Her heart beat.
My heart beat.
One on top of the other.
Beating at the same time.

Soon I didn’t know which thump was mine
and which one was hers.
and which one was Jaydens.

And I thought of his mom.
And heart moms.
And moms that lose their children.
And moms that watch their children lose.
And moms that watch their children win.

And soon I didn’t know which heart beat was mine
and which one was theirs.

Baby Ewan and poetry like what you see above are my new reasons to keep blogging about Will.

*there's another (minor) surgery

Will is having the first of three urology surgeries on Wednesday. We have known since he was born that he would have urology work done but knew very little about it until recently. They told us they would take care of it when Will was about a year old. So now is the time! It will be done outpatient and they say he will be himself by the next day. Each time they will wait 6 months before doing the next step to allow time for healing.

So let's do the math - step 1 in October, step 2 around April, and step 3 next October. Hmmm. Call me crazy...but if that means these will be finished 12 months from now, isn't it realistic to say that his other big things (PT and feeding therapy) might be wrapped up by then too? Could it be that the end of all of this is in sight??

I hate to get ahead of myself but it's nice to think about an actual end date! Even if it's just a hesitant, semi-realistic guess.

I leave you with pictures from a family nap over the weekend.

 

 So sweet!

*there's 11 months!

During his 10th month Will became much more mobile. He has started something that will soon be a crawl. It has already helped him cover some ground at times. This past month he also perfected a knee sit and pulling up on things from that position. He has been laughing a lot and in a public place can often make others laugh with his proud noises. He uses his fingers even more. He can often be seen pushing buttons on toys, usually with his thumb. He has had another phase of sleeping more. This week between doctors appointments he fell asleep in the stroller in the middle of the crowded hospital. Being able to fall asleep and stay asleep when there is a lot going on around him has been difficult for several months. He doesn't like to miss anything! There has been speculation about the possible occurrence of a dimple on his cheek. When he smiles his face takes on a whole new shape thanks to those precious chubby cheeks.

Check back later for a picture...