Sunday, March 16, 2008
Saturday, March 15, 2008
Doing Better
We're so thankful for this blog. It seems as though every time I post something requesting prayer God is so quick to answer it. Grant had a much better day yesterday and seems to be back to himself today. Thanks for praying!
Friday, March 14, 2008
Where's my boy?
Grant has not been himself since the incident with the vaccine. It's been a week now and he's still bumping into walls (his ears are fine), is really moody and doesn't want to eat. Please join us in praying that Grant gets back to his normal self soon and that no damage was done.
Tuesday, March 11, 2008
Fun Grant pictures
Grant waiting patiently by the door for me to come put his snowsuit on.
He is really into cars right now. You can find a race car under any couch, chair or bed at our house.
Grandma and Grandpa giving Grant good-bye kisses before they head back to Florida.
Sunday, March 09, 2008
Vaccine horror story
Grant had a very bad reaction to his vaccine on Friday. By Friday night he had over 104 temperature. This caused his heart to beat very fast which was extra scary with Grant's history. With the doctor's guidance at 2am we were able to get his fever down to 100 through Motrin, Tylenol and luke warm baths. Actually, they were pretty darn cold baths. If you know Jim then you know he sometimes takes things to the extreme. He kept reciting, "better to have him shiver than have brain damage." Once Grant started feeling better he decided that he was rather happy to have both mom and dad playing with him in the middle of the night and we even heard a few giggles from him. He is almost back to normal today except for one weird thing- his balance. He has been running into walls and falling down a lot while walking, which is not typical for him. Please pray that he would not have any damage or lingering affects from this vaccine.
Friday, March 07, 2008
15 month check up
Today Grant went in for his 15 month well visit. It was overall good, but he experienced it as bad. Well, let me back up...Yesterday the visiting nurse came to the house to give Grant his two shots for RSV that he gets every month. But, she accidentally hit a vein on one of them, he bled a ton and was a lot more upset than normal for the rest of the day.
He woke up fine this morning and we headed to the doctor's. This may seem weird, but he normally loves the doctor's office. He loves seeing other kids in the waiting room and from the minute the doctor walks in he is smiling and trying to grab all of her fancy tools. But, today when the nurse walked in (different nurse than yesterday) he freaked out. She didn't even do or say anything. He started screaming, "mamamamamamamamamama" and was clinging to me with huge tears streaming down his face. He would not even sit on the scale for her to weigh him. Then he started thrashing around and tried to head-butt her when she came near. It was the weirdest thing. I have never seen him so scared in his life. He cried through almost his whole appointment until I sat him in the stroller and told him we were leaving. Then, he stopped crying.
I am hoping that he was just having an off day and did not decide to hate doctors, because we have to see them quite often. I wonder if it was the visit from the nurse yesterday or the fact that whenever I do his breathing treatment I tell him that the doctor is making me do this. :) I have to- he cries through the whole thing and I don't want him to think it is my idea to torture him everyday. Either way, the more he understands the harder it is to subject him to pain. When he was a baby it was hard, but in a different way. I've talked to other moms who don't wince at all when their babies get immunizations. I'm near tears every time they poke him. Perhaps it is because I've seen him go through more pain than any child should have to. Or, maybe I'm just emotional and pregnant. I think about how this summer he has to be sedated for his echo and it makes me cringe. He's not old enough to reason with, but he's old enough not to like what's happening to him. When he looks up at me screaming, "MAMA!" I just want to take him and run away and not let anyone poke him again.
Okay, now I do sound emotional and pregnant, so I'll get to the good news before I start crying. :) The doctor said he looks great! She can't believe how far he as come and seems to be on target for all of his developmental milestones. It is really a miracle. We give God all the glory for our joyful, healthy boy. Next appointment: pulmonolgist in April. That's a big one. I'm hoping for a "get out of jail free" card. (ie. permission to take Grant out of the house.)
He woke up fine this morning and we headed to the doctor's. This may seem weird, but he normally loves the doctor's office. He loves seeing other kids in the waiting room and from the minute the doctor walks in he is smiling and trying to grab all of her fancy tools. But, today when the nurse walked in (different nurse than yesterday) he freaked out. She didn't even do or say anything. He started screaming, "mamamamamamamamamama" and was clinging to me with huge tears streaming down his face. He would not even sit on the scale for her to weigh him. Then he started thrashing around and tried to head-butt her when she came near. It was the weirdest thing. I have never seen him so scared in his life. He cried through almost his whole appointment until I sat him in the stroller and told him we were leaving. Then, he stopped crying.
I am hoping that he was just having an off day and did not decide to hate doctors, because we have to see them quite often. I wonder if it was the visit from the nurse yesterday or the fact that whenever I do his breathing treatment I tell him that the doctor is making me do this. :) I have to- he cries through the whole thing and I don't want him to think it is my idea to torture him everyday. Either way, the more he understands the harder it is to subject him to pain. When he was a baby it was hard, but in a different way. I've talked to other moms who don't wince at all when their babies get immunizations. I'm near tears every time they poke him. Perhaps it is because I've seen him go through more pain than any child should have to. Or, maybe I'm just emotional and pregnant. I think about how this summer he has to be sedated for his echo and it makes me cringe. He's not old enough to reason with, but he's old enough not to like what's happening to him. When he looks up at me screaming, "MAMA!" I just want to take him and run away and not let anyone poke him again.
Okay, now I do sound emotional and pregnant, so I'll get to the good news before I start crying. :) The doctor said he looks great! She can't believe how far he as come and seems to be on target for all of his developmental milestones. It is really a miracle. We give God all the glory for our joyful, healthy boy. Next appointment: pulmonolgist in April. That's a big one. I'm hoping for a "get out of jail free" card. (ie. permission to take Grant out of the house.)
Tuesday, March 04, 2008
Fast Facts
Grant has his 15 month check up on Friday, and as I've been thinking about what makes Grant who he is at 15 months, I jotted a few notes down:
# hours of sleep a night: 12-13
# of naps a day: one (1-3 hours)
Favorite breakfast food: eggs
Most frequently spoken words: mama and hot (not used together)
Most frequently signed words: help and cracker
Least favorite times of the day: breathing treatments and diaper changes
Favorite times of the day: morning bottle with mommy (I sing in the rocker while giving Grant a bottle and he either claps or tries to cover my mouth, depending on the day and song. Really.) and evening wrestling with dad
Favorite movie: "Baby Signing Time"
Most likely to throw a fit: when mom is talking on the phone or cooking
Favorite activity: sledding, swinging or playing in the dishwasher
Biggest smile appears: around dogs
Item we can't live without: pacifier attached to his bib
Funny morning routine: Every morning when I go into Grant's room he starts doing the sign for "help." Then he points to all of his stuffed animals that he's thrown from his crib and I have to pick up each one and make the animal noise before putting it back in his crib. If I don't make the noise, he throws it back out and I have to do it again.I get rewarded with a big smile each time I do it correctly. It's worth it!
# hours of sleep a night: 12-13
# of naps a day: one (1-3 hours)
Favorite breakfast food: eggs
Most frequently spoken words: mama and hot (not used together)
Most frequently signed words: help and cracker
Least favorite times of the day: breathing treatments and diaper changes
Favorite times of the day: morning bottle with mommy (I sing in the rocker while giving Grant a bottle and he either claps or tries to cover my mouth, depending on the day and song. Really.) and evening wrestling with dad
Favorite movie: "Baby Signing Time"
Most likely to throw a fit: when mom is talking on the phone or cooking
Favorite activity: sledding, swinging or playing in the dishwasher
Biggest smile appears: around dogs
Item we can't live without: pacifier attached to his bib
Funny morning routine: Every morning when I go into Grant's room he starts doing the sign for "help." Then he points to all of his stuffed animals that he's thrown from his crib and I have to pick up each one and make the animal noise before putting it back in his crib. If I don't make the noise, he throws it back out and I have to do it again.I get rewarded with a big smile each time I do it correctly. It's worth it!
Sunday, March 02, 2008
Family Fun Day
Every Sunday at the Niedzinski's is family day. We try to think of something Grant would like to do and we make sure we are all together. Our choices are somewhat limited in the winter. Today the three of us went sledding. It was nice because it was 40 degrees out, but there was still enough snow to make it work. We saw lots of ducks and dogs and Grant tried to talk to both of them in animal speak. It sounded like a cross between a "baaaa" and a "quack," and came out kind of like, "baaack! baaack!"
Wednesday, February 27, 2008
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.
Friday, February 22, 2008
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...
Thursday, February 21, 2008
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!
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!
Monday, February 18, 2008
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
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
Sunday, February 17, 2008
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.
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.
Friday, February 15, 2008
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.
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.
Wednesday, February 13, 2008
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.
Sunday, February 10, 2008
Saturday, February 09, 2008
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. :)
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. :)
Wednesday, February 06, 2008
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.
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.
Monday, February 04, 2008
Friday, February 01, 2008
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.
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