We had a great day at the Indy races on Sunday at the Kansas Speedway. I have to admit, this is definitely something I never thought I'd do. But, when you are given 3 tickets (when Tyler was at the doctor at Children's Mercy Hospital last week), then it begins to seem like an opportunity to take because you probably won't ever do it again. We did find 2 other tickets from a guy in Newton so I was able to go along with Chris, his Uncle Myron, Ryan, and Tyler. Luckily, the rain held off during the races. We did go down on the infield before the race started and saw things a little closer along with taking some pictures at "Victory Lane".
Ryan was also able to get Helio's autograph (you know, the guy from "Dancing with the Stars").
He was pretty excited, although it didn't compare to the lady next to me who Helio hugged --- she just kept screaming, "I can't believe this! Oh my gosh!" It was a fun experience, although a very long day! We left home at 8 a.m. and returned (after driving through rain basically the whole way home) at 10:30 p.m.
A family of six enjoying life and determined to spread awareness about Ectodermal Dysplasia, and our life with two children having EEC Syndrome
Tuesday, April 28, 2009
Friday, April 24, 2009
Another Kansas City trip
Thursday we traveled up to Kansas City to Children's Mercy hospital again. Tyler saw Dr. Olney again for his foot and had a GREAT appointment. He was put into what they call a "wee walker"- basically a walking boot. He's now able to walk and put pressure on his foot. Since he hasn't for 5 1/2 weeks, this is not real easy for him, but he's excited. He'll be in this for the next 4 weeks or so - we go back for sure early June.

Grant also saw a new doctor yesterday, the hand surgeon Dr. Cheng (a female who was awesome!) She suggested separating the thumb and first finger on his right hand as soon as possible. Her comment was that hands develop by week 4 or 5 in utero so his thumb has been pulled tighter due to being connected to his first finger for 8 months of the pregnancy and now another 8 months - 16 months in all. It would be good to get them apart so the thumb can start to do it's own work. So, the surgery is scheduled for May 8 - it should be outpatient although since we are 3 hours away we may choose to stay overnight just to make sure things are OK. He will be in a cast that will go up to his shoulder for 2 weeks. The separation of his middle and ring finger on his left hand will occur at some point too, but she said that can happen anytime (not an urgent thing). We will possibly try to coordinate that one with his cleft palate surgery.

The best part of the trip for Tyler was the "prize" he received by a nurse aid for Dr. Olney. This guy is named William, but when we were there last week he introduced himself to Tyler as "Uncle Willie". This guy is very fun and made both appointments for Tyler more enjoyable. Yesterday he saw Tyler and Chris in the hall when they went to x-rays and said, "I have something for Tyler, but you have to promise me you'll use it.". Well, in the room, he came in and brought 3 tickets to the Indy race on Sunday at Kansas Speedway. What a gift --- $150 worth of tickets. Tyler was THRILLED!!!! So, Chris, Ryan, and Tyler will be heading to KC on Sunday to enjoy the races, and we are currently looking for 2 more tickets so Uncle Myron and I could go also. We'll see how that comes out.
Grant also saw a new doctor yesterday, the hand surgeon Dr. Cheng (a female who was awesome!) She suggested separating the thumb and first finger on his right hand as soon as possible. Her comment was that hands develop by week 4 or 5 in utero so his thumb has been pulled tighter due to being connected to his first finger for 8 months of the pregnancy and now another 8 months - 16 months in all. It would be good to get them apart so the thumb can start to do it's own work. So, the surgery is scheduled for May 8 - it should be outpatient although since we are 3 hours away we may choose to stay overnight just to make sure things are OK. He will be in a cast that will go up to his shoulder for 2 weeks. The separation of his middle and ring finger on his left hand will occur at some point too, but she said that can happen anytime (not an urgent thing). We will possibly try to coordinate that one with his cleft palate surgery.
The best part of the trip for Tyler was the "prize" he received by a nurse aid for Dr. Olney. This guy is named William, but when we were there last week he introduced himself to Tyler as "Uncle Willie". This guy is very fun and made both appointments for Tyler more enjoyable. Yesterday he saw Tyler and Chris in the hall when they went to x-rays and said, "I have something for Tyler, but you have to promise me you'll use it.". Well, in the room, he came in and brought 3 tickets to the Indy race on Sunday at Kansas Speedway. What a gift --- $150 worth of tickets. Tyler was THRILLED!!!! So, Chris, Ryan, and Tyler will be heading to KC on Sunday to enjoy the races, and we are currently looking for 2 more tickets so Uncle Myron and I could go also. We'll see how that comes out.
Monday, April 20, 2009
Big Weekend
Talk about a weekend that flew by.
Friday night - MCC Sale, awesome food, the amazing slide (which Andrew LOVED), fun for the kids in the kiddie area, not enough time to talk with others because we had to get home to bed to prepare for Saturday.
Saturday - MAYB tournament in Marion: boys went 3-1 although unfortunately the last game was called in the middle due to the other coach being thrown out for yelling at officials and then making a small threat - ref ended the game. The boys were still very proud of their 3rd place medals, and deserve to be.
Andrew loved his time playing with friends during the games (he desperately needed a nap but never did get one). Here he is with "Befany," Avery, and his new favorite "Alwee" is not pictured.

Sunday - Grant was in his "I'm ready to crawl position" with his church friend Morgan. Later in the day he said, "Forget actually crawling, I've figured out the Army Crawl and can get ANYWHERE I need to." Now there is no stopping him and the gate for the stairs will be going up soon.

Sunday afternoon - Piano recital for Ryan - he's saying it's his last one because he wants to quit, but we're still working on him. He did a GREAT job!
Friday night - MCC Sale, awesome food, the amazing slide (which Andrew LOVED), fun for the kids in the kiddie area, not enough time to talk with others because we had to get home to bed to prepare for Saturday.
Saturday - MAYB tournament in Marion: boys went 3-1 although unfortunately the last game was called in the middle due to the other coach being thrown out for yelling at officials and then making a small threat - ref ended the game. The boys were still very proud of their 3rd place medals, and deserve to be.
Andrew loved his time playing with friends during the games (he desperately needed a nap but never did get one). Here he is with "Befany," Avery, and his new favorite "Alwee" is not pictured.
Sunday - Grant was in his "I'm ready to crawl position" with his church friend Morgan. Later in the day he said, "Forget actually crawling, I've figured out the Army Crawl and can get ANYWHERE I need to." Now there is no stopping him and the gate for the stairs will be going up soon.
Sunday afternoon - Piano recital for Ryan - he's saying it's his last one because he wants to quit, but we're still working on him. He did a GREAT job!
Wednesday, April 15, 2009
New Look
Here are a couple "new look" pictures. Decided it was time for a new "Huxman Boys" picture so took this one after the Easter service on Sunday. Mr. Mover/Shaker Andrew couldn't hardly sit still long enough for the picture --- he's already trying to get up.

This is how Tyler and Grant enjoyed the trip to Kansas City Tuesday for Tyler's appointment. I was wishing I could sleep too, but I had to drive instead.
Now for the before and after foot for Tyler. Yes, some healing will still come, but thought it was OK to show the "new foot" now that he can take his splint off once a day.


This is how Tyler and Grant enjoyed the trip to Kansas City Tuesday for Tyler's appointment. I was wishing I could sleep too, but I had to drive instead.
Yesterday
Yesterday ended up being a pretty major day. Monday evening at the board meeting it was voted on to cut 2 teachers from the elementary school due to declining enrollment and very small classes. The news that I was one of those came yesterday morning, right before I left school to take Tyler to KC for a doctors appointment. So, luckily my mother-in-law went with me and kept me occupied, although there was still a lot of "think" time and many tears. Who knows what will be in store for me now. A song has been running through my mind constantly for the last 24 hours that I haven't heard in years: "When God closes a door, he opens a window." Well, I'm bright eyed ready to see the open window and what lies ahead. Pray that I will welcome it with open arms.
On the KC doctor appointment note, Tyler's surgeon said things seemed to be healing. Amen for that. He didn't see signs of a current infection but wants us to continue the antibiotic for the next 10 days until we go back next Thursday, the 23rd. He has a splint with a wrap around it, but we were told he can take it off and soak his foot for 5 minutes or so every day. This also means he can actually sit in the bath tub --- yeah, no more sponge baths. Continue to pray for healing in his foot and his own patience as he gets around slowly. He had been hopping around a lot, but that may have contributed to the rubbing on his foot so he's to use his walker and not hop --- doesn't seem quite "fast" enough for him.

On the cute side of things, here is a picture of Andrew who was able to spend the afternoon with Kaitlen Ortman yesterday. I know they had a blast!!! I couldn't get him to leave and the picture tells it all. Thanks for wonderful friends to help out!!!




On the KC doctor appointment note, Tyler's surgeon said things seemed to be healing. Amen for that. He didn't see signs of a current infection but wants us to continue the antibiotic for the next 10 days until we go back next Thursday, the 23rd. He has a splint with a wrap around it, but we were told he can take it off and soak his foot for 5 minutes or so every day. This also means he can actually sit in the bath tub --- yeah, no more sponge baths. Continue to pray for healing in his foot and his own patience as he gets around slowly. He had been hopping around a lot, but that may have contributed to the rubbing on his foot so he's to use his walker and not hop --- doesn't seem quite "fast" enough for him.
On the cute side of things, here is a picture of Andrew who was able to spend the afternoon with Kaitlen Ortman yesterday. I know they had a blast!!! I couldn't get him to leave and the picture tells it all. Thanks for wonderful friends to help out!!!



Saturday, April 11, 2009
Home Sweet Home
Chris and Tyler just walked in the door, about 4:45 pm on Saturday. We are very glad they are home. Tyler has a splint on his foot now (instead of the cast) and is on an oral antibiotic. He seems to be doing well and will go back for a follow-up Thursday. Here's a picture of him with his "new splint look". Continue to pray that the healing will be successful and for safe travels for the follow-up appointments. Thanks for all of you out there lifting us up in prayer. We feel it!!!
Hopeful
They arrived about 2 a.m. I talked to Chris this morning. They gave him IV antibiotic after they arrived. The doctor on call came in this morning and said she thought they could change him over to an oral antibiotic and then maybe send them home later today. This was excellent news for us. The discharge papers haven't been filled out yet, but we're hopeful they will be and they'll get home late afternoon or early evening. The infection doesn't seem real bad, but they want him to come back and follow-up with his surgeon on Thursday. He is in a splint, since they cut the cast off but Chris says he's doing pretty well. We'll update you more as we hear more. Thanks for all the prayers. Keep them coming for proper healing and safe travels home.
Prayers for Tyler (and Dad)
Just wanted to let people know that Tyler has had a number of really painful nights with his foot, moaning, crying in pain, saying the bottom of it hurts, etc. Yesterday and then especially today we noticed a bad smell from his cast. We looked at the 'Care Cards' we'd received from Children's Mercy Hospital after his surgery and they said that if there is increased pain that is causing crying (which Tyler was having) or a foul odor coming from the cast (another symptom), we were to call the orthopaedic number. We did and to make a long story short we ended up taking him to the ER in Newton at about 6:30. They cut off his cast to see if there was an infection. Unfortunately, they did find an infection on the bottom of his foot. They called Children's Mercy and we were told we needed to take him up there and get him checked into the hospital. So, by the time we got home, packed a bag for Chris and Tyler, and got them on the road it was 10:30 pm. They are still traveling there right now. Please pray for them, safe travels, and knowledge for the doctors when they get there, as well as for Tyler's foot. He's been through so much, we don't need it to get any worse. Wounds can get real bad, so we are praying they get him on the IV antibiotics and that he turns the corner to healing. We are anticipating them being there a few days, so I'll probably try to go with the kids to KC on Sunday so we can all see each other before the week begins. Pray for a quick healing and return home soon.
Sunday, April 5, 2009
4-wheeling
Wednesday, April 1, 2009
7 months
Well, I can't believe Grant is 7 months old already. Unfortunately, he is the 4th child and STILL has not had any professional pictures taken, or any pictures printed for that matter. They are all on my computer ready to order. So tonight I thought I'd try to get a couple good shots of him --- my own professional photography. I didn't get anything too outstanding, but one or two worked.
Andrew all of a sudden disappeared into the pantry. I thought he'd come out with a snack as usual. Well, this time his snack was a little "unusual" - an uncooked lasagna noodle. He would put it to his mouth, take a bite with a loud crunch, and start chewing. I quickly snagged my camera to capture the moment.

Then I captured the moment of Andrew singing his ABC's so I tried to get him to change to Jesus Loves Me. He does very well singing that at the top of his lungs with me when he goes to bed. Dad had to help him to get him started, but here is the best product I could do.
Andrew all of a sudden disappeared into the pantry. I thought he'd come out with a snack as usual. Well, this time his snack was a little "unusual" - an uncooked lasagna noodle. He would put it to his mouth, take a bite with a loud crunch, and start chewing. I quickly snagged my camera to capture the moment.
Then I captured the moment of Andrew singing his ABC's so I tried to get him to change to Jesus Loves Me. He does very well singing that at the top of his lungs with me when he goes to bed. Dad had to help him to get him started, but here is the best product I could do.
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