The Noises of Grant

Grant is enjoying exploring sound. He loves to roar like a lion. He especially associates this sound with dad, so when Jim walks in the door from work Grant goes running to him with a big roar. I need to catch it on video. It is adorable. Grant has also developed a fake laugh. He loves to look at pictures of himself in his book that grandma Niedzinski created for him. When he sees pictures of himself smiling in it he does his fake laugh. He's also learning how to sniff. I have some flowers on the counter that my friend, Louise, gave me last week and every time we pass them he tries to smell them. But, the noise that actually comes out is more like a panting noise. :)He's working on it.

What we did while dad was out of town

Played with the tupperware, played in the tent (yes, it's pink) and played in the freezer...

Back to the snow

We played outside for the first time today since we've been back from Florida. It's 21 degrees out. Grant learned how to open doors at grandma and grandpa's house and he's been trying to get outside ever since. So, today I finally gave in and we put our snowsuits on and went out. He was very happy running around in his boots although I think he prefers the sand over the snow, even if snow does taste better.

We went back to the doctor's yesterday to get Grant's ever lingering yeast infection (on his face) checked out. The doctor is keeping him on the same medications to treat it, but said it may not go away until it gets warmer out. Yuck. Summer can't come soon enough.

We have discovered a few new indoor activities that are keeping Grant busy. He loves to stack up paper plates and bowls. He enjoys unzipping the zippers on all the jackets in the hall closet. Oh, and his favorite is throwing hangers over the babygate and watching them crash down a flight of stairs! Never a dull moment.

I'm 15 weeks along now in this pregnancy and woke up yesterday not sick for the first time in months. Yipee!

More Florida Pictures

Grant running on the beach
Playing in the waves with grandpa Koss

Waiting to feed the buffalo with grandma & grandpa Niedzinski

Looking for birds on the water with grandpa Niedzinski

Driving the golf cart with grandma Niedzinski

Old McDonald's Farm

Grant is having a great week in The Villages with Grandma and Grandpa Nied. He loves to ride in their golf cart into town and look for dogs to wave at while riding around in his stroller. Yesterday he visited Old McDonald's farm. He loved feeding the straw to the cows and did't even try to eat it. However, he did keep trying to eat the chicken feed after he was repeatedly told not to. He learned to answer when asked, "what does the chicken say?" So, now he can tell us on command what the monkey, cow and chicken say.

He'll be heading home tonight with more bumps, bruises and scrapes than he's ever had in his life. I think that kind of thing happens when dads are in charge. :) We're so thankful for such an amazing 10 days.

Valentine's Day Poem

In addition to Valentine's Day, this week is special for another reason having to do with hearts. It is Congenital Heart awareness week. A friend whose child was also born with a CHD sent me this poem. Please take time as you are reading this to pray for all those whose lives have been affected by a CHD. As I read the poem I am reminded again that I am not alone. So many others have shared the same struggles we have over this past year. Courtney and Jeanna, and many others reading this whom I don't even know, we share a special bond that not many others can understand. It has not been easy, but it has been worth every moment. Here it is:

You passed me in the shopping mall...
(You read my faded tee)
You tapped me on the shoulder...
Then asked...`"What'a a CHD?"

I could quote terminology...
There's stats that I could give...
But I would rather share with you...
A mother's perspective.

What is it like to have a child with a CHD?

It's Lasix,aspirin,Captopril....
It's wondering...Lord what's your will?...
It's monitors and oxygen tanks...
It's a constant reminder...to always give thanks...
It's feeding tubes, calories, needed weight gain...
It's the drama of eating...and yes it's insane!
It's the first time I held him...(I'd waited so long)
It's knowing that I need...to help him grow strong...
It's making a hospital...home for awhile...
It's seeing my reward...in every smile.
It's checking his sats...as the feeding pump's beeping...
It's knowing that there... is just no time for sleeping...
It's caths,x-ays and boo boos to kiss...
It's normalcy...I sometimes miss...
It's asking...do his nails look blue?
It's cringing inside... at what he's been through.
It's dozens of call to his pediatrician...
(She knows me by name...I'm a mom on a mission)
It's winter's homebound...and hand sanitizer...
It's knowing this journey...has made me much wiser.
It's watching him sleeping...his breathing is steady...
It's surgery day...and I'll never be ready.
It's handing him over...( I'm still not prepared...)
It's knowing that his heart... must be repaired...
It's waiting for news...on that long stressful day...
It's ...praying...it's hoping...that he'll be okay.
It's the wonderful friends... with whom I've connected...
It's the bond that we share...it was so unexpected...
It's that long faded scar... down my child's small chest...
It's touching it gently...and knowing we're blessed...
It's watching him chasing...a small butterfly...
It's the moment I realized...I've stopped asking...why?
It's the snowflakes that fall...on a cold winter's day...
(They remind me of those...who aren't with us today)
It's a brave little boy...who loved Thomas the train...
Or a special heart bear...or a frog in the rain....
It's the need to remember...we are all in this plight....
It's their lives that remind us... we still need to fight!
It's in pushing ahead amidst every sorrow...
It is finding the strength to have hope for tomorrow.

And no...we'll never be the same...
It's changed our family...
This is what we face each day...
This is...a CHD.

Sandy Hands

We've been here five days now and Grant continues to love every minute. Today the waves were huge because of last night's tornado. He wanted to run straight into the Gulf and refused to hold anyone's hand. I would have thought he learned his lesson when a giant wave smacked him in the face. But, he recovered quickly and wanted more. He has come to dislike the feeling of sand on his hands so his solution is to lick his palms. :) He has stayed healthy despite the palm licking, except for the yeast infection on his face that has been there for about a month now. It isn't a huge deal, but I'm sure Grant is getting sick of an itchy cheek. Please pray for his body to be totally well. Tomorrow we head to grandma and grandpa niedzinski's house.

Florida pictures

Hello Sunshine

Grant and I arrived in Florida at 11pm last night. We're staying grandma and grandpa Koss this week and grandma and grandpa Nied next week. Grant is so happy to be here. Despite only taking a cat nap on the airplane, he was so excited he didn't go to bed until 1am. As I pushed him in the stroller through the airport he waved to everyone in sight with a big smile on his face. He calls everyone either mama or Bob (we don't know why), so we had a few interesting reactions from strangers. He doesn't have much contact with groups of people (outside of the doctor's office) so he really enjoyed watching all of the social interactions going on around him.

It is always a risk to take Grant outside the house in the winter because of the germs. Especially on an airplane. But, after lots of prayer Jim and I decided to take the risk. (Jim is meeting us next week.) I'm so glad that we did. Grant ran straight to the ocean and laughed as a wave smacked him in the face. He went on a long walk with grandma and grandpa this morning where he pointed to the birds in sight and said "Bob." He loves all the stimulation and the new environment. I think this sunshine is good for both of us. :)

FAQ

A big thank you to all of our friends and family for your support as we head into this next phase of life. We've received lots of emails with questions regarding the pregnancy, so I thought I'd try to answer a few here:

Q: What is your due date? August 14.

Q: How many months apart will the babies be? 20 months!

Q: Will you find out the sex? Yes- in April.

Q: What are the chances of this baby having something wrong with it's heart? The chances of having a baby born with Grant's heart condition (TAPVR) are 1 in 20,000. However, they have found that heart defects tend to run in families, so the chances of our next child having a heart defect are 1 in 20.

Q: Does anything different happen this time around knowing your history? Yes. We'll go to U of M the second week in April for an ultrasound and echo on the baby's heart. These tests are about 95% accurate. If everything looks good, then we'll proceed as planned and have the baby at Providence Hospital. If it appears that there is a heart defect, then we'll transfer our care to U of M and have the baby there.

Our Big News

Due in August...


...details to follow!

Hanging in there

Grant is doing a great job being sick. :) What a mean is, he's really happy in spite of the fact that he walks around holding his ear. He is also extra snuggly and wants to sit in my lap and rest his head on my chest several times a day. Thankfully, it seems like his cold is staying in his nose and not traveling to the chest. He's not really into eating right now, which is not great because he is still struggling to maintain a healthy weight. So, we continue to pray and wait this out.

That makes two of us

Well, I seem to have caught Grant's bug. Not fun. But, Grant seems to be holding his own. The visiting nurse came this morning and said his lungs sound amazingly clear for what he looks like on the outside (snot city). I really feel like God is protecting his lungs. Thank you for praying.
P.S. The doctor never called today regarding the RSV or flu swabs they took yesterday, so I'm assuming he doesn't have them. Another big thank you, God.

Grant is sick!

Please pray for Grant. He was up all night coughing and has a nasty cold. We just got back from the doctor's and he has an ear infection and a yeast infection (on his face). The doctor also did swabs for RSV and the flu and said she'll call tomorrow with the results.

Grant has been doing so well, but the doctors have been warning us how serious it would be if he got sick. Please pray that he does not have the flu or RSV and that he heals quickly. Thanks.

Sledding

We've been having fun sledding in the park behind our house.

Graduation Day

Grant graduated from occupational therapy this weekend! Kia, his OT, who has been working with us for about 9 months now said that she has never, ever seen a child improve as fast as Grant. She said that at this point the average person could not tell that he's had any difficulties in the past, and if he continues on this trajectory, then even a trained professional may not know he has struggled with his motor skills. So, she unofficially graduated him, but wants to see him again in a couple of months, just to make sure he's still on track.

The day after our great appointment with Kia, Grant's physical therapist, Carol, told us that she only has a few small concerns and she thinks he is almost ready for graduation as well. She is going to see us only twice a month now, to continue working on strengthening his right side.

Grant will still continue to see the PT, OT and early intervention teacher from the public schools on a regular basis, but they are making noises about phasing themselves out too. They said that they could graduate him, but he is too much fun, so they want to keep seeing him. As for right now, it is nice to have professionals to continue to check on Grant's progress and challenge him to do new things.

Playing with Grant

I took a few pictures of Grant this morning enjoying his usual morning activities. The first thing he does when he wakes up is runs to the bathroom to see if daddy is still showering. This morning we missed daddy in the shower, so Grant decided to hop in himself, still in his pajamas. When I turned my back on him for just a second he quickly made his way to the trash can and found my old toothbrush inside. He immediately picked it up and started brushing. Gross.

His latest favorite activity is tumbling. Mostly it consists of throwing himself on us, but he does also like to do log rolls across the room while giggling. Just the other day he attempted his first somersault. We're not sure who taught him the somersault thing. The second picture is him getting ready to do some sort of gymnastics move where he comes dangerously close to breaking his neck every time.

A Day to Celebrate

Today we are thanking God. Grant finished weaning off two more medications today. Our friends' baby, Rhyer, finally came home from the hospital after 4 months. Thank you for all your prayers!

The Sun is Shining

Today in Michigan the sun is shining and it is almost 40 degrees out. Grant and I thought this was cause for celebration, so we walked to the ice cream store and Grant enjoyed his first "Cold Stone Creamery" experience. When we got back Grant had fun running around the yard chasing his shadow and hitting all of the "for Sale" signs on the street, yelling, "Boom!" Dad taught him to play the "boom" game and Grant loves to hit all objects in the room now and yell, "boom." When he hits the tv he then looks at me and shakes his head. Unfortunately, this doesn't stop him (unless dad is home).