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.
Wednesday, January 30, 2008
Tuesday, January 29, 2008
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.
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.
Sunday, January 27, 2008
Tuesday, January 22, 2008
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.
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.
Friday, January 18, 2008
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.
Friday, January 11, 2008
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!
Wednesday, January 09, 2008
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).
Friday, January 04, 2008
Quarantine Continues
We had a morning full of doctors appointments today and received a mixed report. Grant officially graduated from seeing the GI doc and as a result can come off one more medication. He is very pleased with Grant's progress and thinks there is only a 20% chance that we'll ever have to see him again. Even though Grant is still underweight he is enjoying his bottle (awake!) and is eating better than ever.
The pulmonolgist is still concerned about Grant's lungs. Even though his most recent chest x-rays are his best ever, they still don't put him out of the danger zone. Doc doesn't want Grant to have contact with other kids or be in public places until May. He said that RSV is rampant right now and that he had to put two kids like Grant in the hospital this morning. He said his airways are still too constricted and the lungs too congested to take any chances. So, we continue to keep Grant isolated as much as possible, knowing that an end is in sight. He said we'll most likely have to endure one more winter of this, but by summer of 2009 we should be able to treat Grant like a normal kid. We're still praying for a miracle, that this day would come sooner, rather than later.
The pulmonolgist is still concerned about Grant's lungs. Even though his most recent chest x-rays are his best ever, they still don't put him out of the danger zone. Doc doesn't want Grant to have contact with other kids or be in public places until May. He said that RSV is rampant right now and that he had to put two kids like Grant in the hospital this morning. He said his airways are still too constricted and the lungs too congested to take any chances. So, we continue to keep Grant isolated as much as possible, knowing that an end is in sight. He said we'll most likely have to endure one more winter of this, but by summer of 2009 we should be able to treat Grant like a normal kid. We're still praying for a miracle, that this day would come sooner, rather than later.
Tuesday, January 01, 2008
Happy New Year!
We are looking forward to a very nondramatic, boring 2008. It is amazing to think that last year at this time we were just arriving home from the hospital, learning how to be both parents and nurses at the same time. Grant has come so far. He is doing a great job communicating with us both in sign language and with words. His favorite sign is, "help," which he does 500 times away when he wants our attention, can't reach something or is getting his diaper changed. He is getting 3 new teeth this week and seems to be going through a very sensitive phase. Anytime we say, "no," he starts sobbing and hides his head in our laps.
Overall, Grant is doing well health-wise. We have appointments with both the lung and gut docs this week for our regular check ups. In physical therapy we are working on Grant holding his head straight and putting an equal amount of weight on both legs. Right now he tilts his head to the left when he walks so that he doesn't have to put as much weight on his right side. This is something that we want to nip in the bud right away so that he doesn't develop secondary physical problems from the head tilt. Please pray that we would be able to correct this quickly and easily. Physical therapy is getting a little more challenging as Grant continues to develop his own will and his own ideas of how he wants to spend his time. :)
Please also say a prayer for our friend, Rhyer, and his parents. They have been in the hospital since September, when he had open heart surgery. It felt like forever that we were in the hospital, when it was really only 20 days. I can't imagine what 14 weeks would do to me emotionally and physically. My heart breaks for our dear friends, Bill and Courtney. Rhyer has another heart surgery in March, so we are really hoping they can get home sometime soon and recuperate before they have to do this again.
Thank you for all of your prayers and support in 2007. We are so thankful for our amazing friends and family, and even the blog readers we have never met face to face. God has heard our prayers. We look back at 2007 with thankful hearts.
Overall, Grant is doing well health-wise. We have appointments with both the lung and gut docs this week for our regular check ups. In physical therapy we are working on Grant holding his head straight and putting an equal amount of weight on both legs. Right now he tilts his head to the left when he walks so that he doesn't have to put as much weight on his right side. This is something that we want to nip in the bud right away so that he doesn't develop secondary physical problems from the head tilt. Please pray that we would be able to correct this quickly and easily. Physical therapy is getting a little more challenging as Grant continues to develop his own will and his own ideas of how he wants to spend his time. :)
Please also say a prayer for our friend, Rhyer, and his parents. They have been in the hospital since September, when he had open heart surgery. It felt like forever that we were in the hospital, when it was really only 20 days. I can't imagine what 14 weeks would do to me emotionally and physically. My heart breaks for our dear friends, Bill and Courtney. Rhyer has another heart surgery in March, so we are really hoping they can get home sometime soon and recuperate before they have to do this again.
Thank you for all of your prayers and support in 2007. We are so thankful for our amazing friends and family, and even the blog readers we have never met face to face. God has heard our prayers. We look back at 2007 with thankful hearts.
Sunday, December 30, 2007
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.
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.
Friday, December 21, 2007
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.
Wednesday, December 19, 2007
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.
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.
Monday, December 17, 2007
A visit from Grandma and Grandpa
Grandma and Grandpa Niedzinski came to visit this weekend and Grant loved every minute of it!
Thursday, December 13, 2007
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!
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!
Sunday, December 09, 2007
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!
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!
Subscribe to:
Posts (Atom)