A family of six enjoying life and determined to spread awareness about Ectodermal Dysplasia, and our life with two children having EEC Syndrome
Sunday, September 27, 2009
Tanganyika Wildlife Park
Today we had an awesome family day at Tanganyika Wildlife Park in Goddard, KS. If you get a chance, I would definitely recommend going. It was such a hands on experience for the kids - they loved it! We were able to walk very close to many of the animals, and even pet a kangaroo and ride a camel. The best part was there wasn't much walking --- which was a nice change from most zoos. Andrew could have walked the whole thing, but instead we had both him and Grant in the stroller and Tyler in the wheelchair. We had an amazing afternoon and would go back in a heartbeat!
Lemurs - the baby was so cute and VERY active
The aviary for the parakeets was cool. The birds were flying right around our heads and right next to us. The one lady in there said they'd landed on her shoulder and climbed around her head. I'd never been that close to birds before.
Sunday, September 20, 2009
Are You Ready for Some Football????
Ryan's football season is officially in full swing. They have played two games, and unfortunately have lost both of them. This last week was a close one against Hesston, with the final score being 0-2. The defense has been doing pretty well, but there has not been a lot of scoring taking place. It's fun to go and watch, except we found out that noon games with a 2 1/2 year old and a 1 year old is not the ideal time to be outside at a game. Oh well, we'll manage.
For those of you wondering about Tyler and Grant and the recovery, they are doing great. Tyler went back to KC this last week so they could take off his cast, check everything out, and then they put a new YELLOW cast on. He already has it signed by all his friends:)
Grant will be going back to KC on October 7, they will remove his current cast, and then he'll go into surgery for them to complete the closing of his gap on that foot. We'll be overnight again on the 7th, get dismissed on the 8th and plan to stay up in KC because he has his cleft lip/palate TEAM meeting at 8:00 am on the 9th. I'm really hoping that at that point we'll be able discuss a surgery date for his cleft palate to be repaired. They are still holding out on him being 18 pounds, and we are currently stuck at 15. I just feel something has to give --- soon. It's becoming a vicious cycle. Please pray that a decision can be made and we can move forward with this. Thanks!
For those of you wondering about Tyler and Grant and the recovery, they are doing great. Tyler went back to KC this last week so they could take off his cast, check everything out, and then they put a new YELLOW cast on. He already has it signed by all his friends:)
Grant will be going back to KC on October 7, they will remove his current cast, and then he'll go into surgery for them to complete the closing of his gap on that foot. We'll be overnight again on the 7th, get dismissed on the 8th and plan to stay up in KC because he has his cleft lip/palate TEAM meeting at 8:00 am on the 9th. I'm really hoping that at that point we'll be able discuss a surgery date for his cleft palate to be repaired. They are still holding out on him being 18 pounds, and we are currently stuck at 15. I just feel something has to give --- soon. It's becoming a vicious cycle. Please pray that a decision can be made and we can move forward with this. Thanks!
Monday, September 7, 2009
Labor Day Weekend
What a weekend. Labor Day, hum, it seemed like a "laboring" day all weekend. But, it was a fun-filled one. Saturday I went to parttake in the "sales" at Stone Creek nursery and began the landscaping at our house. Although I could have done way more, I stopped after 4 trees (2 maples and 2 cottonless cottonwoods), 2 large planters, 2 mums, 7 other flowers, and a bird bath. So, after you purchase these, then they of course have to get put in the ground. The laboring begins . . .
Maple Tree
The dirt clean up crew . . . Ryan on the tractor of course
Break time for Grandpa on his favorite toy --- with two extra passengers:)
The beginning of the flower beds
Porch with one of the planters of mums
Tyler was the spectator on the porch
Thanks for a special visit from the McLaughlin family

We were blessed to be able to have overnight guests Sunday evening as our NFED friends moving from Colorado to Oklahoma stopped in and visited. We had a wonderful time catching up as adults and the kids enjoyed playing (of course until much past their bedtime:) I believe the highlight for the kids would be the 4-wheeler rides Chris gave them - first time riders for all.
Then we ended our Labor Day weekend going to Chris' great uncles house for clean-up/get ready for sale day. Chris and Ryan went and helped with some of the outdoor clean-up. I brought the pizza for lunch, and then can't really say I accomplished anything with cleaning. I did attend the auction down the road and bought a much needed dresser for Andrew's room, so the day was a success. And, Andrew was able to become friends with "Cousin Kendra". Keep in mind that this "now college student" Kendra was a cute little 4 year old flower girl in our wedding --- oh how time flies!!!!
Wednesday, September 2, 2009
Back in Rooms
We're all back in our rooms. Everything went well. Rooms are next door to each other - thank goodness. Grant and I are hanging out in Tyler and Dad's room. Tyler is resting and Grant has been eating very well. Thanks for all your thoughts and prayers.
One, Two
Our travels to KC this morning went well. We arrived here around 5:50 (leaving at 2:40 am). Grant was taken back for surgery a little before 7:30. Our guess is he'll be back there about 1 1/2 hours or 2 hours. Tyler's is scheduled for 10:30. He is NOT happy right now and really doesn't want to be here. Soon it will be over and we'll be on the mend. Here are the "pre-op" pictures.
Tyler's before foot
I'm too slow, because the doctor just came and talked to us. Grant is done, everything went well, and they were able to straighten the big toe and put a pin in it. The doctor wants him to come back in 4-6 weeks and then he'll close the gap in the cleft. He said doing all that at once is a little too invasive so he wanted to do the gap later. So, we'll be back in 4-6 weeks . . . Tyler hasn't been taken back yet, but we'll expect it reasonable soon.
Tuesday, August 25, 2009
Surgeries
Well, some of you may not have realized it, but Grant had ear tube surgery yesterday (the 24th). Of course he did great, they took him back around 7:45 and he was out by 8:15 or so. Ear tubes are such a quick thing (about 7 minutes for the actual procedure). The rest of the day you couldn't even tell he'd had anything done --- he acted fine.
Now, we'd love to have that same result next week. On September 2 (Wednesday) Grant AND Tyler will both be having foot surgery by Dr. Olney (the orthopaedic surgeon) in Kansas City at Children's Mercy Hospital. We will be traveling up the night before (I think) because Grant will be first thing in the morning and Tyler right after him. Grant will be having his big toe (which currently sticks out) squeezed in by closing the cleft in his foot some. Tyler will be having the exact same thing done on his right foot that he had on his left. Both will be in the hospital overnight (separate rooms due to the fact that they have no dual rooms there). Chris and I will both be there --- one of us in each room, and possibly switching some. We are to be dismissed on Thursday at some point (hopefully by noonish). Keep us in your thoughts and prayers as we anticipate these surgeries. Thanks!
Well, some of you may not have realized it, but Grant had ear tube surgery yesterday (the 24th). Of course he did great, they took him back around 7:45 and he was out by 8:15 or so. Ear tubes are such a quick thing (about 7 minutes for the actual procedure). The rest of the day you couldn't even tell he'd had anything done --- he acted fine.
Now, we'd love to have that same result next week. On September 2 (Wednesday) Grant AND Tyler will both be having foot surgery by Dr. Olney (the orthopaedic surgeon) in Kansas City at Children's Mercy Hospital. We will be traveling up the night before (I think) because Grant will be first thing in the morning and Tyler right after him. Grant will be having his big toe (which currently sticks out) squeezed in by closing the cleft in his foot some. Tyler will be having the exact same thing done on his right foot that he had on his left. Both will be in the hospital overnight (separate rooms due to the fact that they have no dual rooms there). Chris and I will both be there --- one of us in each room, and possibly switching some. We are to be dismissed on Thursday at some point (hopefully by noonish). Keep us in your thoughts and prayers as we anticipate these surgeries. Thanks!
Sunday, August 23, 2009
Baby turns ONE
Our baby turned one on Thursday. Today we celebrated with family and a few friends. Oh how the time flies. It doesn't seem that long ago that we were waiting for his arrival. What a blessing he is in our lives!!!
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