*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...

*there's his nicknames

puppy
pup

pupperooni

puppykins

babykins

Baby Bop

Goof Troop
 Willie
Willie D.
punkin

punkin pooter
punkin poot

Baby Will
slim pickens

Chicken Little

Buster
Mr. Smiles

Mr. Cutes

Rip Torn
bumpkin
baby bumpkin
scooter
Fuster Brown
Toots McGee
 Trickster
Mr. Mischievous*

He also answers to Will. :)


Here is the man of many names attempting to take his first drive. 

 *nicknames will be added to this list as they are remembered or invented

*there's a typical day

Here are some moments captured from Will's day:

 Play time.

 His little injury is already looking better.

  Nap time.

 Bath time.

 He loves to hear the sound it makes when he rubs his fingers on different surfaces.

He did this one for several minutes.

 

*there's a reality check

I was recently reading through blogs of other heart moms and found one that was different. This mom's child needed a heart transplant. We all know organ transplants are happening in the world but coming across a specific story like this was new to me. I have her permission to share this information.


Here is the story of her daughter receiving her new heart.


This one describes how they connected with the donor family.


This is the post where she encourages readers to become organ donors. 

If you haven't yet, do so right now.
That site has a donor card you can print and sign. Then tell your family about it.

What an amazing story. It puts my daily life into perspective.

I've made some changes to the format of this blog page. I have made it easier for people to find where I've talked about our experience with TOF. I was pondering getting all of Will's heart stuff out of my system soon and then not mentioning it again here. I don't want it to define him. I have been appreciative to other families that I've learned from but I didn't exactly want to live in the CHD world all the time. I want Will to be able to forget that he has a heart defect for months at a time...except for his annual cardiology appointments where he will show off his health and progress of course. It's important that he continue to go to those appointments every year. Mainly because he will have to give his permission for them to write papers about his unbelievable accomplishments and all that. He's going to amaze us and them. :)

Then I realized I want to keep reading these blogs. Its comforting to see them living their lives - whether or not they are mentioning their child's heart. Some of them are about kids just a little older than Will. I am going to want to see how active these other kids are as they grow, how the families talk to them about their CHD, etc. How is it fair that I want to take that from other heart families but not give? I think there are some people in my life that would prefer I never mention anything about Will's health again. But I decided it's more important that I stay connected and offer Will's story. There are babies not yet born whose families will hear that phrase tetralogy of fallot just like us, will think it sounds like gibberish just like me, and they will want to learn from us like we have from others.

Now go finalize your organ donor status. :)

*there's his first accidental boo-boo

Pre boo-boo

 

Post boo-boo

*there's PT

Out of all the things we do with Will, physical therapy (PT) is probably my favorite. He doesn't have severe developmental delays but I requested an evaluation to see if he could benefit. Since I have the time to work with him so I wanted as much help as possible. Luckily he qualified and it has been a really good experience. The first therapist came to our house weekly for a few weeks. We don't see her anymore because she moved to another state. But we got along well and she taught me several things about what Will does well and what could use improvement.

We've seen our new therapist a few times and she is really great too. We go to her one morning each week. I thought having PT at home was really convenient, but going to the place where the equipment is almost unlimited is much better than convenience. The gym is huge and has other PT sessions going on at the same time. I like that I get to see the style of the other therapists. The only downside is that Will is so observant he wants to watch everyone else rather than his therapist. She works with that though and uses the distractions to her benefit. For example, if she wants him to roll to one side, she faces him so that side is entertaining rather than just looking at her.

Every week when we leave she gives me a list of things to work on with Will for the next week. We're supposed to practice everything 3 times a day. Will has always responded really well to stretches and strength building. Sometimes it only takes a couple of days to see an improvement. This week we are holding toys to his sides to get him to reach across his body in both directions, having him spend time on his knees to build strength in his legs, and enticing him to roll from his back to both sides and stay there to play for a little while.

She also explains why he needs to do things a certain way and in a certain order. Because of the G tube on his stomach she is okay with him skipping the army crawl babies often use before crawling on their hands and knees. Since he doesn't like being on his stomach at all, it takes effort to get him to stay on his hands and knees to build strength in the right places. But in a matter of two weeks he is much more comfortable on his hands and knees and will stay there for longer and longer periods of time.

One of the cutest things Will has done lately is show his desire to move. He gets started but either doesn't know what to do next or is still gaining strength and coordination.

Here is an example. 

I will find him like this and leave him there to see if he figures out what to do next.
Can you tell what toy he was trying to reach? 

It's a pretty big deal that he willingly lets himself get in that position. He hates being on his tummy.

After letting him try on his own for awhile I help him get to this position:

Definitely pre-crawling!