Christmas Week 2007

Christmas morning


Grant and Grandma

Aunt Lindsay and Grant relaxing in the hammock

Grant playing in the sand for the first time

Beach shot from our balcony

Grant playing in the pool with his grandpa and uncle Hal



This was the best week of Grant's life so far! He loved the sand, the water and the warm weather. Oh, and the foot shower. That was his favorite. Best of all, everyone stayed healthy. We are so thankful for such an amazing week.

The Explorer

Grant loves to explore. After his morning nap we usually put on his adorable fleece snowsuit (thanks Grandma Nied!)and head outside. Grant loves to touch all of the trees in the yard and dig through the snow in the garden to try to find dirt. When he finds the brown stuff it is like he hit gold and he can't stop laughing.

Playing in the snow

Our big boy

We are having so much fun with Grant. He seems to have turned into a toddler overnight. He loves imitating everything that mom and dad do, especially brushing his hair or stealing to keys to pretend to unlock the door. He is adding new words at a rapid rate. As of today he can say mom, dad, grandma, grandpa, ball, phone, water, hot, up and bye-bye. Of course, if you are not a parent or grandparent you may just think he is babbling. :) He loves to touch everything. This weekend when grandpa Niedzinski was here he took Grant on a "touch tour" and carried him around, helping him to touch everything that was normally too high to reach.

Grant also loves to be quizzed on body parts. His favorite is the belly-button. Not only does he like to find his own belly button, but he wants to find the belly button of everyone who he meets. You never know when he'll lift up your shirt and start laughing. We're trying not to take it personally.

A visit from Grandma and Grandpa

Grandma and Grandpa Niedzinski came to visit this weekend and Grant loved every minute of it!

Good X-Rays!!

We went to U of M today for Grant's one year cardiac check up. After an afternoon of tests, Grant's cardiologist came in the room and said, "his chest x-ray looks good." I asked, "do you mean, good for Grant or normal kid good?" He said, "almost normal kid good!"

Wow! No one has ever said Grant's chest x-rays look good! We are so excited. Grant can start to wean off two of his medications now. He'll be down to only two medications a day. We have not done anything different, so we are totally convinced this is a miracle from our loving God. Thank you, God, for blessing our little boy!

Grant's birthday video 2

Grant's birthday video 1

Grant and his birthday cake

Happy Birthday, Grant!

Wow. He made it. We made it. It's been one heck of a year. We never could have made it through this year without YOU! The ways that people helped us over this past year are too many to count. Here are just of few of the highlights that we are thankful for:

1. Meals! Did you know I didn't cook until June?! That's seven months of meals. A huge thank you to our friends from the Ann Arbor Vineyard Church who brought us meals in the hospital everyday and everyone at Genesis the Church in Royal Oak and my Community Bible study group who delivered them when we arrived home.

2. Feeding specialists. Countless friends and family members that came over to feed Grant by syringe, medicine dropper, bottle while sleeping, tube in nose and other ways I've probably forgotten. They also sent us an accumulation of two giant storage tubs worth of fancy and bizarre looking bottles, straws, cups and pacifiers in an attempt to help Grant eat.

3. Babysitters. Grant had his first non-family babysitter on Christmas day last year when our friends sat by Grant's bed in the hospital so we could enjoy a meal at the local Chinese restaurant with my family. Since then I have had help from over 50 different women and several trusted men. Most often I was home (at least in the beginning), but they enabled me to get other things done around the house or take a much needed nap. I could not have made it without you.

4. House cleaners. Thank you to the anonymous group from Genesis the Church that bought us a cleaning service for 6 months saved Grant from lots of dirt and germs, and me from stressing out. Four people came to clean at once. I've never seen anything like it.

5. Laundry service. This was mostly my mom. Thank you for not only doing my laundry, but all the many other things you did along the way from babysitting to driving to the random stranger's house you met on the internet to get the Haberman bottle. :) I'm especially touched by you sitting by Grant's bedside early in the mornings in Ann Arbor when it was too painful for me to be there. You've played such a crucial role in caring for Grant this past year--thank you, thank you, thank you.

6. Body guards. These people accompanied me to Grant's many doctor appointments. Did you know he had at least one appointment per week for the first six months of life? More typically it was several. It was both physically hard (with the oxygen tank) and emotionally hard to go alone.

7. Mentors. This group of people saved me from making lots of silly mistakes. Jim's sisters were key in this; thank you! So were moms of other kids with special needs.

8. Therapists to Grant. Kia, Grant's Occupational Therapist and now our close friend, coordinated hours of therapy and training to keep Grant growing and developing despite his early set-backs. Thank you for going above and beyond your job to love us.

9. Therapists to Me (Shannon). My family, friends and especially my sister were consistently there for me. I have never felt so loved. So many of you gave, knowing I didn't have anything to give in return. Thank you for listening and for loving me so well.

10. The Jester. This is my Dad. He stops by every single morning while Grant is eating breakfast to make him laugh. Grant has come to expect him and it is the highlight of his morning. I can't imagine having started our days without it.

11. Errand runners. I never thought that one day I would miss going to the grocery store. I used to hate it. But, I have had so many people going to the grocery store, the pharmacy, Toys R Us etc., I actually think I'm starting to miss running errands. But this group of people has made my life so much easier!

12. The Prayer Warriors. Jim's parents not only prayed with and for us, but they know more praying folk than I can comprehend; they activated prayer chains that go from Florida to India and beyond. Thank you to every single person who prayed for us along the way.

Happy Birthday, Grant!

Mr.Mischief

Extraction

Today will mark our family's third surgery in the past year. Thankfully, it is the least serious- my wisdom teeth! One of my wisdom teeth started coming in last month. It must be some sort of sympathy thing so that I realize how much Grant's mouth must hurt when he is teething. :) Please pray for a quick and easy surgery and recovery.

Last night Grant's physical therapist came over and was super excited by his progress! She said she wished all kids caught onto walking as fast as him. (He doesn't crawl at all anymore.) I asked if that means we are done with physical therapy?! She said that no, he still has some asymmetry (always using his left side to stand up, leads with the left when climbing the stairs etc) when at this age he should use both equally. So, she'll continue working with Grant until his right side is stronger. If we quit now she said he'd most likely have problems with the next set of skills like skipping, jumping etc. In the meantime Grant has been sleeping 13 hours a night because he's so pooped after walking around all day.

Grant Walking

Here is a video of some of Grant's first steps. The cheerleaders in the background are mom, grandma and Carmel.

Thanksgiving

Grant enjoyed his first turkey day, especially mashed potatoes with gravy. He also enjoyed his first real (nonGerber) cookie. Last night Jim and I were talking about all the things we are thankful for. It is easy to get caught up in where we want to be (Grant with healthy lungs) and miss all the mini-miracles we've seen over the past year. It is hard to believe that the happy, turkey gobbling boy used to be on oxygen, not take a bottle, be fed through his nose, didn't like to be held, didn't use his right side etc. He took 17 steps over the weekend and loves to blow kisses to everyone he sees. We are so thankful for all that God has done in Grant's life this past year.

Grant Having Some Fun

Our Little Walker

Grant took his first steps this week! He can take anywhere between 3 and 5 steps before he wipes out. He is enjoying his new skill and I have a feeling he'll be running by next week! He continues to be very observant and enjoys copying things we do. He likes to grab the bottle of lotion or hand sanitizer and rub his little hands together. He loves to try to open door knobs and climb on anything he can. Recently I caught him pushing a step ladder over to his babygate to try to climb over. Every day is an adventure!

Thank you for your prayers about the bottle. He is back to taking 2-3 bottles a day!

Grant's first haircut

Insurance update

Good news- the insurance problem seems to be resolved. Grant started back up with his therapy this week. Thank you so much for your prayers!

Doctor's visit

We saw the doctor on Friday for Grant to get a flu and RSV shot. It doesn't actually prevent RSV, but it would make it not as serious if he did get it. We continue to carry Lysol spray around the house. :) The good news is that he's finally weighing in at over 20 pounds. The bad news is that he is starting to reject the bottle. It has been such a treat the last few weeks to rock him and feed him in my arms. Not to mention the extra calories that he's been getting! (He's not really into drinking formula from a sippy cup- just water. )We're not sure why he's swatting the bottle away again, but it is discouraging to me. Specific prayer requests:

1. That Grant would continue to eat well and enjoy the bottle
2. That Grant's lungs would be completely healed
3. That I would stay positive and creative being indoors (and isolated) with Grant this winter
4. That my body would be completely healed (still doing PT for ankle and recently started PT for tendinitis in my wrists, thumbs and elbows)

Grant's giggle

No new news

We still don't have answers about Grant's lungs yet. We'll be in for another set of chest x-rays in about a week. Still no progress on all the insurance stuff either. The good news is that whenever I feel discouraged we put on Grant's music and dance. All my worries quickly fade away...

He's Got Moves

Check out this video of Grant dancing!

Million Dollar Baby

We found out from our insurance company today that we have "maxed out" the number of visits Grant can have with therapists. This is a huge bummer because Grant is making so much progress with the help of his PT and OT. He still crawls funny and doesn't really like to put weight on his right leg, but his leg is getting stronger. I very much depend on the work the therapists do and need their support for his development. We have another special insurance through the state that is supposed to cover whatever our insurance doesn't (Grant is officially a million dollar baby), but I am having a hard time getting them to cover these costs. Please pray that this would be an easy fix and Grant could continue his therapy as early as this weekend.

Surprised by Grant

Grant continues to keep us on our toes. Our latest surprise is that he LOVES the bottle. That's right- after refusing the bottle awake for the past 6 months, he has now decided that he likes it. During the past few months Grant has only had one small bottle while he's sleeping at night. But, the other night when I went in to feed him he was awake and grabbed at the bottle. He sucked it down. It has been over one week now and he's still grabbing for the bottle. It is such a treat to give him a bottle in the morning and evening with him awake and snuggling in my arms.

Grant in costume

Grant's favorite things

A few of Grant's favorite things: books, bellybuttons, sinks, hairdryers, water bottles, banging together balls,cooked carrots, pizza, walks outdoors, music and dancing, wastebaskets, looking in the mirror while saying, "yeah, yeah, yeah.." (no joke)

A great day!

The echo today showed that Grant's heart looked good! There was one small part that they were not able to see, but they don't think it is the source of the problem. We are so thankful that he doesn't have to have another heart surgery! So, we are trying to enjoy the good news and focus on the present. Tomorrow we'll talk to the pulmonolgist and find out what the next step is. Thank you so much for your prayers and love during this trying time. A big thank you goes out to grandma for enduring the long day at the hospital with us.

Keep prayin'

Specific prayer requests for tomorrow:
1. That Grant would receive the perfect dose of sedation (noon)
2. That Grant's echo would show no signs of anything wrong with his heart
3. That Grant would stop coughing (if we can go a week without a cough then they won't have to do the brochoscopy)
4. Peace for mom and dad
Thanks!

A surprise trip to U of M

I talked to Grant's cardiologist today and he is concerned about Grant's latest chest x-rays. Sometimes this can be caused by the veins narrowing. This happens to about 10% of the kids after heart surgery, within the first year. If this was the case, it would require another open heart surgery. We'll be back at U of M on Thursday for more tests. Please pray that Grant would be totally healed.

"Good job!"

Grant has recently begun to tell himself "good job." It is the cutest thing. When he accomplishes something (like putting a shape into the right hole), he stops, claps for himself and says, "good gob!" Well, at least we know that he is not lacking in the praise department if it is his first word after "mama" and "dada."

Grant continues to love music. We brought his music radio to the doctor's on Friday and he danced for all of them. They thought he was a hoot. I thought it was even funnier to watch all of his doctors dance with him. :)

I'm still waiting to hear back from the cardiologist regarding Grant's last chest x-rays.

Jim and Shannon's Big Night Out

This is Guest Blogger, Carmel (aka CeCe to Grant), in the absence of Jim and Shannon, as they are out on the town celebrating their wedding anniversary. For those of you keeping count, that's 6 years of love for Jim and Shannon. Hurrah for them!
Grant and I had a great time together and I would like to record here in blog-permanence that I taught Grant to grab his socks when I said "socks".
Besides that exciting achievement, we read together; systematically emptied out every basket, then refilled them; chased each other around the living room; and smiled the night away.
Grant continues to be the happiest kid anywhere and he soaks up information like a sponge. That's it for me! Shannon will be back for the next installment of Life with Grant.

Lung update

We saw the pulmonolgist today and didn't get very good news. Grant's lungs are the worst they've ever been. Basically the doctor said that when looking at Grant's lung x-rays you would expect to see a very sick child. But, in looking at Grant and listening to his chest Grant appears totally healthy. He is puzzled by it, so he wants more chest x-rays done in 4 weeks. He also said that the chest x-rays show some kind of narrowing of the airways. So, current prayer requests are:

1. That Grant's lungs would be totally healed and his next x-rays would show it.
2. That God would protect Grant from the flu and RSV. (We can't get our first RSV shot until November 1.)
3. That God would give us peace in the midst of this tough news.

Rub-a-dub-dub...

Doing better!

We are thanking God for Grant's quick recovery. He went from having a fever, cough and cold to only coughing 5 times today. He's sleeping well and feeling so much better. Thank you for praying. It made all the difference!

Sick Grant

Yuck- Grant has a cold. He saw the doctor today and so far his lungs sound okay. Please pray for a quick recovery and that it would not turn into anything more serious.

10 months old!

Updated Prayer Requests

Overall, things are great. We have so much to be thankful for. Grant brings joy to every day. It makes all that we've gone through this past year worth it. Although the scariest scenarios are pretty much a thing of the past, there are a few prayer requests we're hoping you'll continue to pray for:
1. That God would heal Grant's lungs. It's flu season again, so until Grant is healed, we have to be super careful of germs. So, as of right now Grant can't be around any kids until end of March.
2. That Grant would not drool so much. This seems like a silly request, but if you've ever met Grant you'll see that he constantly wears a bib. It was brought to my attention recently by the Early On experts as an oral motor issue. (It is more than just teething drool. He soaks through a stack of bibs every day.) It is not a big deal now, but it will be if he's 5 and still drooling.
3. That Grant would learn to use his right leg correctly. Thankfully, his right leg is much stronger than it was just a few weeks ago due to all his therapy. But, old habits die hard and he needs to start using the new tricks he's learned so that he won't walk with a limp.
4. That my ankle would heal quickly. The cast is off and I'm in physical therapy, but I'm still in pain. I can't wait until Grant and I can take a run together one day!

I LOVE TO EAT!

Grant continues to enjoy eating. His favorite is still Mexican food. He's cruising all over the place and can stand up for a few seconds without holding on to anything.I got my cast off this week, so he's happy to have his mommy back in action!

Yipee!

Rhyer's surgery was successful! As you know if you are reading this, the road to recovery is a long one. Please continue to keep Rhyer and his family in your prayers.

Tuesday surgery

Rhyer's surgery has been moved to Tuesday morning at 7am. It should last between 4-6 hours. Rhyer was born with only half a heart, so they will have to "rewire" him to make half his heart do the work of the whole thing. I'll update after I hear from Bill and Courtney.

Please pray for Rhyer

Grant is now officially enrolled in our local school's Early On program, so we have someone at the house working with Grant Sunday-Thursday. It is quite busy, but Grant enjoys the interaction and is improving quickly in all areas.

Our attention right now is focused on Rhyer, a sweet baby boy born to our friends, Bill and Courtney last week. Like Grant, Rhyer was born with a rare and serious heart defect. He will be having the first of his three open heart surgeries tomorrow at U of M. Please pray for Rhyer and his family during this time.

Getting older

Grant seems to be growing up overnight. He now says "mamamamamama" and he's figured out that if he says it when I walk away I won't leave. :) He is trying to walk and loves to push his little lawnmower around the room. We are having a lot of fun lately dancing , singing and rolling the ball back and forth. He heads for the stairs any chance he gets and so far we've only had one tumble. (Now we use the gates.) He loves balloons and toilet paper and spicy enchiladas. Yep, you heard me right- enchiladas. Yesterday for lunch he went bite for bite with me on my enchilada. The night before had ate veggie curry burgers. I guess he just had too mature of a palate for formula. :)

A Visit from Friends

This week we have our good friends, Justin and Lauren, visiting from Colorado with their baby, Pierce. He's just 4 weeks younger than Grant. Here are some photos of the dads enjoying time with their sons.

Good News

Two bits of good news to share-
1. Jim's mom's surgery was successful. She's in the hospital recovering overnight.
2. Grant went to U of M today for some routine tests and they went great. They took him off Viagra!

Get Well Soon!

Jim's mom is having surgery tomorrow. Please pray for a successful surgery and a quick recovery.

9 Months Old

Now that Grant is mobile, he really isn't into sitting still for his picture. So, Grandma helped us out in this one...

A new toy

We're still working on Grant's crawl. Because of the way Grant uses the right side of his body (and mostly his right leg), the experts think it is very possible that Grant had a stroke during his heart surgery. So, we're currently working with two different occupational therapists, two physical therapists and one speech therapist to try to retrain the brain.

Grant has a funny looking pair of biker shorts that are sewn together in the middle that he is supposed to wear for 15 minutes a day. They force him to crawl with his legs together and not "cheat" by only using his left leg. (His preferred method of transport is a bear crawl using only his left leg, while dragging the right.) In order to motivate Grant to crawl from one end of the room to the other, we got out a big box and found that if we throw the ball through the box, Grant will go retrieve it. Here's a picture of Grant and his box. He's not wearing his special shorts though, because we find that there are not many smiles while the shorts are on. :)

Transitions

Little Grant has had a tough time since my ankle surgery. He does not like transitions, whether it be from the highchair to the stroller or from inside to outside. Once he's there, he's happy; he just doesn't like the process. That has made the past six days and multiple care givers really hard for him. I'm so thankful for all the people that have volunteered to care for Grant. It is unfortunate that it is so confusing for him. I wish he could just enjoy all the love that is being poured out on to him.

Last night grandma and grandpa had Grant over for a sleepover. (Thank you, thank you!!) Unfortunately, he woke up quite a few times in the night and would only stop crying if they would hold his hand. So, around 4:30 they brought him in their bed and he finally fell asleep on his back with one grandparent's pinkie in each hand.

Keeping up with Grant

Life is never dull. This morning at 4am Jim dialed 911 and within 3 minutes we had a firetruck, ambulance and police cars at our house. Thankfully, it was for me and not Grant. It turns out that I am allergic to the pain medication they gave me after the surgery and when I took my 4am dose I had enough built up in my system that I started having horrible chest pain, stomach pain and many other weird symptoms.

They rushed me to the hospital where I had chest x-rays, CT scan, and ultrasound and blood work done. (They thought I might have had a blood clot.) But, thankfully it was nothing serious. As I lay there with an oxygen canula strapped to my nose I thought about how many times Grant has had to go through the same tests. Yuck.

I'm home now and trying to get some rest. Thanks for your prayers for a speedy recovery.

Charming Snapshots

Ankle surgery was successful. I'm in a lot of pain and missing my baby, but Grant's cute 9 month photos brought a smile to my face. Check out www.charmingsnapshots.com under the blog of today's date (scroll down past the pregnant women) to see his adorable photos. :)

Ankle surgery

Tomorrow is the big day for my ankle surgery. Please pray for a successful surgery and quick recovery. Thank you to all the friends and family who are providing meals and care for Grant while I'm out of commission.

Who did this to my hair?

"Da Da!"

Yesterday Grant said "Dada" for the first time! He had not been making any sounds (besides a high pitched squeal of delight) since he used to babble as a baby. We've heard mumblings of a speech delay from various people evaluating Grant and have been praying that he'd start trying to communicate with us. So, we were very delighted to hear Grant saying "words" yesterday.

My favorite daddy son moment came tonight during dinner. While Jim and I were eating dinner (Grant was already in bed), we heard a distinct "dada" cry through the baby monitor. Jim jumped out of his chair faster than I thought possible. He started running up the stairs (in the dark) and I all of a sudden heard a huge crash and then a scream (from Jim!). I could hear him quietly comforting his boy through the baby monitor and then he came limping downstairs with a bloody toe. But, he had a huge grin plastered on his face. It was worth it. :)

Happy Grant

A visit to the zoo

Mom and Grandpa took me to the zoo, but they didn't want to take me out of my stroller because I hate getting buckled back in. So, they tried to give me the best view possible...

Mr. Mischief

Evaluation by Early On

Today Grant had his evaluation with Early On, an early intervention program for kids with medical conditions and developmental delays. I think they did a great job and saw a pretty accurate picture of Grant. They said he's on track for most things (he can throw a ball better than most 18 month olds!), but he shows signs of a speech delay, crawling issue and stiff muscles. Hopefully these things can be corrected with different kinds of therapy. We've got more appointments set up to evaluate him further. She did think that Grant was a ton of fun, especially when he'd do something, smile and clap for himself. :)

Unfortunately, Grant has the flu. We're trying our best to keep him hydrated and will have to see the doctor tomorrow if he's not better. Please pray for a speedy recovery.

Grant and his buddy Jack

Congratulations Aunt Lindsay and Uncle Josh!