Tuesday, September 22, 2009


Just to kind of catch me up here, I'm posting my last Carepages update from Luke's carepage. I'll post pictures and updates tomorrow.


Hi friends…
I can hardly believe I’m writing what is probably one of my last posts on Carepages. I have appreciated so much having this place to ask for prayers for our son/our baby and share how he is doing. It has provided the enormous blessing of each of you walking with us on this path that I’ve come to call Luke’s turtle race marathon. You guys have rejoiced with us when it’s time to rejoice and mourned with us when it’s time to mourn. You’ve been right there every step of the way—truly Jesus with skin on. One set of footprints in the sand and I KNOW they weren’t mine. I don’t think I ever felt alone throughout the whole ordeal…amazing to me. So many memories are flooding my mind as I write this. Some make me cry and some make me laugh. I will forever be grateful for every single memory and every act of kindness and prayer. There are so many I can’t even begin to name them all and some I’m not even aware of because they were done anonymously or friends were taking care of our other kids and meals and Christmas shopping, etc. Some were friends taking care of other friends’ responsibilities so that that friend could be at the hospital with Luke and me. You cried with, stood with, ate with, prayed with…walked with us/me throughout the race. There are no words big enough to convey what’s in my heart and I thank you all with my whole heart.
Since Luke crossed that finish line, things have been going really well. It really doesn’t seem possible still sometimes. I’m still grinning ear to ear when I think about it. Luke is now able to play in the pool and have water poured over his head at bath time. He has been adapting to a more normal toddler diet and shoves way too much food in sometimes…I gave Luke his first haircut, though I couldn’t bring myself to cut those adorable blonde curls off. So he’s still sporting long hair and I think he’s adorable. I actually took Luke to the nursery at church on a quiet day and got to worship un-interrupted. Though he was pretty teary at first, he had a great time and was even comforting another little girl by bringing her toys and sitting down next to her. He did later end up with the sniffles, but it wasn’t cause for worry! John and I even went to New York for a few days to see John’s family and left all of the kids with their Nonnie. I’ve never been away from them like that and never could have been away from Luke without crossing that finish line. He’s been going to the park and playing like a normal toddler. We couldn’t do that before with the germs. He’s even had a few tantrums and has taken to screaming sometimes when he gets frustrated. I treasure that screaming and vividly remember when he was on the vent in ICU and we didn’t know if he would make it at all or if he would have voice damage and not be able to scream. That’s not to say we’re not training him to use other methods of communication…ahem. He’s into EVERYthing, too. It actually makes me laugh-well, most of the time. He just wants to explore everything and is so sweet and curious. He has climbed out of his crib and made my heart skip a beat when I heard the thud. He throws his short little arms around our necks and gives the best squeeze hugs. Danielle, Jake, and Allie are forever hugging and kissing on him, too. Luke is such a smart, compassionate, sensitive (in a boyish, manly way) little guy.
Right now, we’re watching Luke to see where we are with the reflux. He has been completely weaned from his medicine and is having some reflux. It is expected just because of how the medicine works, though. I’m hoping to see it taper off and go away. I think it is slowing down, but it’s hard to tell sometimes. (update—I think the reflux is gone!) I can also see that he is still somewhat wobbly on his feet and he doesn’t say many words. Some developmental delays were expected and I’m not really worried, but it does give me pause sometimes. He is a great communicator, though. He gets his message across in very creative ways and definitely understands what we’re saying to him and what’s going on around him. He imitates lots of things we do. He even cooperated with me for some long photo sessions and would go and sit on his little stool…I was very impressed. I’m avoiding doing a speech evaluation for now because I just want some time off. We’ll see how things go for just a little bit.
I had to do something to mark the crossing of the finish line, so I bought Luke a medal and had engraved on the back his name, Turtle Race Marathon Winner, August 2009. I had a lump in my throat when I picked it up…I got pictures today with him wearing it. I’ll post them and a picture of the back of it.
We’re finally going to celebrate this weekend and get away and relax and just play. Fun in the sun at the beach…here we come! I can’t wait to dig my toes in the sand and just enjoy our time. It’s been such a long road. Okay—just got back and it was a little rainy some of the time, but it was great. We saw 3 rainbows, 2 of which were a complete rainbow over our condo. It was almost as if God was reminding us of His promises. It was really good. Good closure, very emotional for me. You can't really have the rainbows without the rain.
Speaking of marathons—I’m officially training for the Austin marathon. I’m turning 40 a couple of days after the race and I’ve been wanting to get back to it for a while. This race has a lot of meaning for me. Marathon mentality…yep. Here comes that lump in the throat again. I’m in pathetic shape with all that’s happened these last couple of years, but I'm getting there and I’m finishing this race! Most of my training will be with Luke in the jogger pointing at doggies and birds and saying hello to his Nonnie on his toy phone…I can’t think of a better way to train for this.
Realizing how much I love being able to go back and look at updates and pictures and see so many answered prayers, I started a personal blog. It’s just a place where I can continue to post our happenings and pictures. It will be really neat to go back and read later with the kids. It’s very simple—really just quick updates and pictures, nothing professional--, just for our family and any family and friends who are interested. I haven't put up stuff from New York or the beach yet...catching up. The address is: www.blessingsandblips.blogspot.com
I had to share this. On Sunday at church I was talking with a friend who has been praying for Luke all this time, too. We were talking about the miracle of his laryngeal cleft not being there in Cincinnati and how this whole road has been so amazing. She got teary-eyed and, no surprise!, so did I. It was another reminder of how you all shared this burden with us. Truly, I KNOW I could not have gotten through this all without you, without Jesus. I get chills when I think about everything. God has brought so much good out of it all, like He says He will. I wonder what plans He has for “our baby.” I don’t know what they are, but I think they’re big.
As for me, I know He will be using these experiences for His good, like He promises. I really see me going back toward the medical field. Maybe as a PICU nurse, maybe as some sort of support or advocacy for parents; maybe I’ll get to photograph the blessings from above……I don’t know exactly. I have a new compassion for my own kids, for sick kids, for parents of sick kids…All I know for sure is I am forever changed and, while I don’t think I’d choose to walk it again, I’m thankful for it. For the first time in about 3+ years, we’re looking forward to a new normal this school year. One free of therapies, procedures, dr appts, surgeries, medicines, shots, swallow studies, battles with insurance companies…
So here we are on the other side--With un-expressably (is that a word?) huge thanks and gratitude in my heart and soul…Love,TammyHi friends…
I can hardly believe I’m writing what is probably one of my last posts on Carepages. I have appreciated so much having this place to ask for prayers for our son/our baby and share how he is doing. It has provided the enormous blessing of each of you walking with us on this path that I’ve come to call Luke’s turtle race marathon. You guys have rejoiced with us when it’s time to rejoice and mourned with us when it’s time to mourn. You’ve been right there every step of the way—truly Jesus with skin on. One set of footprints in the sand and I KNOW they weren’t mine. I don’t think I ever felt alone throughout the whole ordeal…amazing to me. So many memories are flooding my mind as I write this. Some make me cry and some make me laugh. I will forever be grateful for every single memory and every act of kindness and prayer. There are so many I can’t even begin to name them all and some I’m not even aware of because they were done anonymously or friends were taking care of our other kids and meals and Christmas shopping, etc. Some were friends taking care of other friends’ responsibilities so that that friend could be at the hospital with Luke and me. You cried with, stood with, ate with, prayed with…walked with us/me throughout the race. There are no words big enough to convey what’s in my heart and I thank you all with my whole heart.
Since Luke crossed that finish line, things have been going really well. It really doesn’t seem possible still sometimes. I’m still grinning ear to ear when I think about it. Luke is now able to play in the pool and have water poured over his head at bath time. He has been adapting to a more normal toddler diet and shoves way too much food in sometimes…I gave Luke his first haircut, though I couldn’t bring myself to cut those adorable blonde curls off. So he’s still sporting long hair and I think he’s adorable. I actually took Luke to the nursery at church on a quiet day and got to worship un-interrupted. Though he was pretty teary at first, he had a great time and was even comforting another little girl by bringing her toys and sitting down next to her. He did later end up with the sniffles, but it wasn’t cause for worry! John and I even went to New York for a few days to see John’s family and left all of the kids with their Nonnie. I’ve never been away from them like that and never could have been away from Luke without crossing that finish line. He’s been going to the park and playing like a normal toddler. We couldn’t do that before with the germs. He’s even had a few tantrums and has taken to screaming sometimes when he gets frustrated. I treasure that screaming and vividly remember when he was on the vent in ICU and we didn’t know if he would make it at all or if he would have voice damage and not be able to scream. That’s not to say we’re not training him to use other methods of communication…ahem. He’s into EVERYthing, too. It actually makes me laugh-well, most of the time. He just wants to explore everything and is so sweet and curious. He has climbed out of his crib and made my heart skip a beat when I heard the thud. He throws his short little arms around our necks and gives the best squeeze hugs. Danielle, Jake, and Allie are forever hugging and kissing on him, too. Luke is such a smart, compassionate, sensitive (in a boyish, manly way) little guy.
Right now, we’re watching Luke to see where we are with the reflux. He has been completely weaned from his medicine and is having some reflux. It is expected just because of how the medicine works, though. I’m hoping to see it taper off and go away. I think it is slowing down, but it’s hard to tell sometimes. (update—I think the reflux is gone!) I can also see that he is still somewhat wobbly on his feet and he doesn’t say many words. Some developmental delays were expected and I’m not really worried, but it does give me pause sometimes. He is a great communicator, though. He gets his message across in very creative ways and definitely understands what we’re saying to him and what’s going on around him. He imitates lots of things we do. He even cooperated with me for some long photo sessions and would go and sit on his little stool…I was very impressed. I’m avoiding doing a speech evaluation for now because I just want some time off. We’ll see how things go for just a little bit.
I had to do something to mark the crossing of the finish line, so I bought Luke a medal and had engraved on the back his name, Turtle Race Marathon Winner, August 2009. I had a lump in my throat when I picked it up…I got pictures today with him wearing it. I’ll post them and a picture of the back of it.
We’re finally going to celebrate this weekend and get away and relax and just play. Fun in the sun at the beach…here we come! I can’t wait to dig my toes in the sand and just enjoy our time. It’s been such a long road. Okay—just got back and it was a little rainy some of the time, but it was great. We saw 3 rainbows, 2 of which were a complete rainbow over our condo. It was almost as if God was reminding us of His promises. It was really good. Good closure, very emotional for me. You can't really have the rainbows without the rain.
Speaking of marathons—I’m officially training for the Austin marathon. I’m turning 40 a couple of days after the race and I’ve been wanting to get back to it for a while. This race has a lot of meaning for me. Marathon mentality…yep. Here comes that lump in the throat again. I’m in pathetic shape with all that’s happened these last couple of years, but I'm getting there and I’m finishing this race! Most of my training will be with Luke in the jogger pointing at doggies and birds and saying hello to his Nonnie on his toy phone…I can’t think of a better way to train for this.
Realizing how much I love being able to go back and look at updates and pictures and see so many answered prayers, I started a personal blog. It’s just a place where I can continue to post our happenings and pictures. It will be really neat to go back and read later with the kids. It’s very simple—really just quick updates and pictures, nothing professional--, just for our family and any family and friends who are interested. I haven't put up stuff from New York or the beach yet...catching up. The address is: www.blessingsandblips.blogspot.com
I had to share this. On Sunday at church I was talking with a friend who has been praying for Luke all this time, too. We were talking about the miracle of his laryngeal cleft not being there in Cincinnati and how this whole road has been so amazing. She got teary-eyed and, no surprise!, so did I. It was another reminder of how you all shared this burden with us. Truly, I KNOW I could not have gotten through this all without you, without Jesus. I get chills when I think about everything. God has brought so much good out of it all, like He says He will. I wonder what plans He has for “our baby.” I don’t know what they are, but I think they’re big.
As for me, I know He will be using these experiences for His good, like He promises. I really see me going back toward the medical field. Maybe as a PICU nurse, maybe as some sort of support or advocacy for parents; maybe I’ll get to photograph the blessings from above……I don’t know exactly. I have a new compassion for my own kids, for sick kids, for parents of sick kids…All I know for sure is I am forever changed and, while I don’t think I’d choose to walk it again, I’m thankful for it. For the first time in about 3+ years, we’re looking forward to a new normal this school year. One free of therapies, procedures, dr appts, surgeries, medicines, shots, swallow studies, battles with insurance companies…
So here we are on the other side--With un-expressably (is that a word?) huge thanks and gratitude in my heart and soul…Love,Tammy

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