*there's a marvel

You Are A Marvel

Each second we live is a new and unique moment of the universe, 

a moment that will never be again . . .

And what do we teach our children? 

We teach them that two and two make four, 

and that Paris is the capital of France.

   
When will we also teach them what they are?

We should say to each of them: 

Do you know what you are? 

You are a marvel. You are unique. 

In all the years that have passed, 

there has never been another child like you. 

Your legs, your arms, your clever fingers, the way you move. 

You may become a Shakespeare, a Michaelangelo, a Beethoven.  
You have the capacity for anything. 

Yes, you are a marvel. 

And when you grow up, 
can you then harm another who is, 
like you, 
a marvel?
You must work - we must all work - 

to make the world worthy of its children. 

Pablo Casals

Faster than a speeding bullet...

It's SuperWill!

*there's his favorite drinking helpers

An update on Will's feeding progress - he is drinking so much more lately. For most meals he was drinking either 0 or 5-10mls per meal in the past. Just so you know, 5 mls is about a teaspoon! As of last week he suddenly is drinking more! He has been known to drink 1-2 OUNCES at one time now!

So here is a run down of what we use and how they help. First, a disclaimer: the feeding therapy recommendation is that his cups need to be very free flowing and not have flow-restricting valves. Those are usually in kids' cups to make them spill-proof. So if you are looking for a cup that doesn't make a mess you will need to ask someone else...I only have experience with the messy ones!

The Take and Toss 5oz Little Learner Sippy Cups are the ones we usually use.
Pro #1: This brand has interchangeable parts. The top of this cup also holds the snack cup top and the removable handles that come with the Take and Toss 7 oz Sippy Cups with Removable Handles. Will liked the handles at first but they are really difficult to get on and off for me (Con #1). Now he grabs the little 5 oz cup easily without the handles and I think he prefers it. These are perfect for people like us that are keeping track of how has been drunk after each meal because there are measurements on the side like a baby bottle! (Pro #2)  It is really hard to see the numbers depending on the color of the cup and liquid but you can do it. The small "snack cup" size is perfect for Will. Remember...these are not spill proof cups!(Con #2) They are sometimes listed as such and I'm sorry to say that is just not true! They are really inexpensive at less than $2 each. (Pro #3) Since Will uses the spout to practice chewing with his new teeth we will be needing some new ones soon. Maybe then we will graduate to some with cartoon characters on them!

Another cup that I hoped and still hope to like is the Born Free Drinking Cup.

It also has the measurements listed on the side and has interchangeable parts with another cup, the Born Free Training Cup which looks almost identical but has a very different spout. One is to help babies transition off the bottle and the other is their version of a typical toddler sippy cup. Will has enjoyed this cup a few times but then seemed uninterested, so I put it away for awhile. It does have a flow restrictor which Will doesn't need, so I'm saving it for possible future use.

It went against my I'mnotgoingtobuyeverycuponthemarket plan but the Tommee Tippee Explora Truly Spill Proof Straw Cup was a completely un-researched impulse buy. I didn't include a picture because it doesn't deserve it. It is spill proof; it is also practically drink proof. I can't drink from this cup. I even handed it to Chris to see if I was doing something wrong and he couldn't drink from this cup. Afterward I looked online at parent reviews and one said "My tongue actually hurts from trying to make this cup work." Amen. Despite them not being insulated, I think I will be trying the Take and Toss or the Ziploc Straw Cup when the time comes for straw cups. I haven't tried Ziploc yet but their lids seem more secure. And when he needs a bigger one I'm thinking about the Munchkin Mighty Grip. I'm pretty sure it doesn't have a flow restrictor either.

I think the unfortunate Tommee Tippee purchase came from false confidence after a surprising success with the Earth's Best Organic Yogurt Fruit Smoothie. (just to clarify- this is not a cup but an eating milestone!)

We were in Nashville between doctor's appointments and I was looking for something at Whole Foods anyway so I grabbed one and took it with us to lunch. He LOVED it. Despite it being thick and having to suck it through a short but wide built-in spout, he couldn't get enough of this. His favorite thing is to put the cap in his mouth, taking it off and putting it back on the pouch without any hands. He still hasn't tired of this game. One day he must have been super hungry because he downed the whole 4 ounces at once and didn't even need my help holding it. We tried to show the feeding therapist the next day and he squeezed this one by Ella's Kitchen in a way that made it explode onto his face and into his eyes. That was a screaming disaster. We regrouped and tried again at home and he is back to liking them in a supervised way.

Now for the cup that helped him make progress - the Nuby No Spill Cup with Super Spout! It is definitely my favorite cup for him right now. It leaks a little, but not much. I think it works better for him now than when he was younger because the spout was a little bit too big. It releases liquid with gentle pressure (accomplished with a bite down) and the handles are secured to the lid. The handles being secure is very important, because that is the difference in the cup I recommend and the cup I DON'T recommend...the Nuby No Spill Grip 'n Sip Cup. Ease of drinking from this one is irrelevant because this cup breaks. Easily. Will broke 2 of them during their first use. How can a cup for a toddler not withstand a collision with the floor?

For a taller version of the GOOD cup I would get the Nuby Super Spout Easy Gripper. But be warned that another Nuby cup I don't like is the No Spill Easy Grip Cup. Although the names are similar and the cups look the same, the silicone lid on the latter creates a strange vacuum when drinking. In short, if you want a Nuby go with the Super Spout and whether it says Easy Grip or Easy Gripper.

Some day Will is probably going to read this and ask why on earth I thought anyone would want to know these things. I'm not sure anyone does. But even though they are disguised as product reviews, these are milestones and snapshots of our life. It's not just a cup to me!

*there's summertime

We have been having a great summer! Will has been busy this summer playing outside as much as possible. Here are some of the other things we have been up to:

live Bluegrass music

Will's favorite thing about Bluegrass night was
playing in the pea gravel...he was filthy!

Taking a quick drive through the grocery store.

Chris and I got to check out The Woods at Fontanel
recently for a Willie Nelson concert:

It is literally in the woods.

Right by a creek!

Willie and his son Lukas

 

We also saw Billy Currington at the Wildhorse Saloon
for one of Chris' work events:

 Sorry about the poor quality of those pictures; they were all taken on my phone.
Here are more from around the house:

Playing on the splash pad.

 

Trying out the slide

I moved this chair all the way under the light switch just so I could

be amazed at my ability to turn on the lights!

They can't see me when I do this.

Peek-a-boo!

Lying on the couch with Daddy

Cuddling on Father's Day

Chris' Father's Day present that he has been wanting for months! Complete with a road trip through beautiful Cannon County to pick it up.

*there's heart camps

Since it's summer I thought it would be a good time to share these U.S. heart camps.

Camp Meridian
Located at Camp Merrowvista in Tuftonboro, New Hampshire.
Free of charge, serving CHD kids ages 8-12.

Camp Odayin
(Odayin is the Ojibwa word for "heart")
Located at Camp Knuston in Crosslake, Minnesota.
$25, serving CHD kids ages 8-17.

Camp del Corazon
(meaning "the heart" in Spanish)
Locations: Catalina Island, Malibu Canyon, and Mammoth Snow Camp, all in California.
Free of charge, serving CHD kids ages 7-17.

Camp Bon Coeur
(meaning "Good Heart" in French)
Located in Eunice, Louisiana
First time campers pay $35, serving CHD kids ages 7-16.

Camp Kon-A-Kwee
Located in Fombell, Pennslyvania.
Prices vary for CHD kids ages 7-17.

Camp Braveheart
Located at Camp Twin Lakes in Rutledge, Georgia.
Free of charge, serving children ages 7-18.

Camp Taylor
Located in Livermore, California.
Free of charge for youth camps serving for ages 7-12 and 13-17 separately.
Fees vary for family camps in Santa Clara and Sanger, California and Oahu, Hawaii.

Check out this page for a list of camps for kids who have had organ transplants.
Very Special Camps - lists camps for a variety of medical issues.

Camp Boggy Creek
Located in Eustis, Florida for residents of Florida.
Serving children with life threatening illnesses ages 7-16.

The Center for Courageous Kids
Located in Scottsville, Kentucky
Serving children with chronic or life threatening illnesses.
Year round opportunities available including family retreat weekends.

For a more extensive list see the It's My Heart website here.

*there's more than a year and a half

Will is 19 months old today! 

That is officially closer to 2 than 1. 

Here are pictures of him in the waiting room before his feeding therapy appointment this week. You may notice that he is holding something in one of his hands...that is a container of food that we used in feeding therapy. Will likes to help and prefers to carry something when we go to places like this.

 

Feeding news - we rarely use Will's feeding pump anymore. We give him formula to drink with every meal and whatever he doesn't finish goes through his tube. We can do that with a syringe which is much faster than using his pump. In the past his tummy couldn't hold that much liquid at a time so putting it in slowly with a pump was best. We still use the pump for a large feeding he gets when he's sleeping at 9pm. Increased volume tolerances was a difficult thing to see progress with since we can't control how much food his stomach can hold. The timing of this is working out perfectly...because Will has also starting trying to climb out of his high chair during feedings. Now he is only seated for a few minutes as opposed to more than 30 minutes.

Medicine news - I can hesitantly announce that Will *MIGHT* be off all his medications. The only one left is Prevacid for reflux. Cross your fingers - I think his reflux is gone!

*there's recovery

Will's surgery went well on Wednesday.
Recovery is easier this time, but still not fun.

Here are some pictures I took with my cellphone while we waited for surgery at the hospital.

He worse his scrubs for the occasion.

Pre-op area Cozy Coupe ride

Next he tried a scooter.

Children's hospitals are truly a different world.
Doctors and nurses apologized to HIM for being in HIS way!

I found an empty hallway for him to roam.

Climbing the crib.

Waiting in the crib.

Laughing at himself while trying to find a way out.

He was a trooper. Very little pain medicine needed. And we learned last time that we can help him feel better by feeding him less for awhile. His GI doctor explained that when you and I don't feel well, we lose our appetites and eat less. Since Will is tube fed we were still putting the same amount as always through his pump and which caused him to spit up a lot after surgery. This time we prevented that by diluting his formula with Pedialyte and giving him less food until he seemed able to handle his usual diet.

*there's another surgery day

I already have several of Stephanie Husted's poems throughout this blog. They are long and probably not interesting to you, but they have been so helpful for me to read. Will is having another surgery tomorrow and although it doesn't have anything to do with his heart, this poem is still appropriate.

If I could write your story son,
(Oh how I wish I could)
I'd pen for you a journey,
That held nothing but good.
Wouldn't it be perfect?
If that job belonged to me?
I think I'd change a thing or two,
While writing your story.
I'd write of lasting happiness,
The storms would stay at bay,
I'd write your story carefully,
I'd have so much to say,
You'd know not of a hospital,
Or days in ICU,
You'd only know of simple things,
Like other children do.
The sun would rise...Yes everyday,
And shine to make you smile,
You'd never know a day of pain,
You'd never face a trial.
You'd dance to music all your own,
While watching Sesame Street,
I'd tuck you into bed each night,
And life would be complete.
I'd write of picnics in the park,
And winters in the snow,
I'd write of laughter, joy and love,
I'd sit and watch you grow.
I'd proofread till my eyes grew tired,
Each line and paragraph,
And let my pen fall to the floor,
Then stop to hear you laugh.
And never would I question,
What sick children must face,
Never would I have a need,
To ask God for his grace.
I'd likely live oblivious,
Of what it means to be...
A member of this "special club",
I call my heart family.
If I could write your journey son,
Perhaps I'd not convey,
The message that HE longs to share,
"We must live for today".
Your story has been written,
Each stroke penned with great care,
He knows each thought I have of you,
He's numbered every hair.
No, I can't write your story,
Although I wish I could,
I must heed what HE says to me,
"All things work for the good".
If I could write the life you'd live,
I'd fail...don't you see?
I'll leave it in much better hands,
He'll write it perfectly.

 by Stephanie Husted  

*there's care for caregivers

The name of the game is taking care of yourself, because you're going to live long enough to wish you had. ~Grace Mirabella 

When we truly care for ourselves, it becomes possible to care far more profoundly about other people. The more alert and sensitive we are to our own needs, the more loving and generous we can be toward others. ~Eda LeShan 

If you think taking care of yourself is selfish, change your mind. If you don't, you're simply ducking your responsibilities. ~Ann Richards

I'm a social worker. It is a field with a high level of burn-out. I have spent a lot of time studying compassion fatigue, vicarious trauma, and self care for caregivers to prevent my own burn-out. These tips aren't just for parents of kids with medical challenges but ANY caregiver. I list these as a reminder for myself, but also share them with any other parents:

Hopeful Parents
Special Moms Heal
Hope on Hope
the assertiveness ladder to decrease stress with communication
the Five Good Minutes book series
Married with Special Needs Children article about communicating with your spouse based on the book by that title
Self Care Strategies found on this page

Connecting:
Parents Helping Parents
The Family Cafe - annual conference connecting families in the U.S.
The Father's Network
Exceptional Family TV - weekly episodes about families like you
Special Needs Moms Like Me
Parenting Special Needs - emagazine


Planning and Record Keeping:
Care Notebook for Parents
Special Care Organizational Record (SCOR) for Children (and another for Adults)
Planning for the Future of a Special Needs Child from caregiver.com

*there's Nurses Week!

I wonder how many nurses we have met since Will was born? I have no actual idea, but I bet the number pushes 50 or 60. I am grateful for the decisions each of them made for him, however small or large. An Open Thank You Letter from another mom says it better than I could.

*there's check ups and growth

Will's 18 month well check was today. I suspected he had gained significant weight lately...over the past two weeks he has suddenly seemed really heavy. The scale confirmed - Will has finally left the less than 3rd percentile in weight AND height! His weight is now in the 3rd percentile and his height is in the 4th! So he didn't leave that area by much...but it is so nice to see the dots that are plotted on the graph actually land closer to the desired area!

The big surprise at the appointment is that Will has his first ear infection. I was hoping he would be magically exempt from regular illnesses like those. :) Also, he has been on a daily antibiotic for months to prevent infections...ear infections must be the exception. I'm sorry that he hasn't been feeling great. At the same time we are relieved to know what was wrong because he had a really tough time sleeping last night.

Last week was his hearing follow-up. Will has always passed the hearing screenings but he has several risk factors that could affect his hearing so he is monitored every 6-12 months. This is the first time there has ever been less than perfect results. We have to return in a few weeks for a recheck...the audiologist believes that the left ear could have some fluid left from a recent cold. Ironically, the left ear looked fine today but the right ear was infected! We will also return to the pediatrician after a round of antibiotics to make sure the infection is gone.

So this month's tally: audiologist check up, audiologist follow up, pediatrician check up, pediatrician follow up, a surgery, and a surgery follow up 10 days later. After that Will won't need to be seen again by a doctor (cross your fingers) until he turns TWO in November! Can it be?? Six appointments in one month and then NO appointments for SIX months?!?! I hope I didn't jinx it!