We were VERY pleased with the care at Children's Mercy --- it was amazing! They truly do a great job caring for children and have the touch! It was a very good experience! We are glad for that as we will be doing the next step of the Cleft surgeries when Grant is about a year old and that will be at Children's Hospital too. We look forward to seeing the same staff again (we hope). Dr. Singhal did a great job and all the nurses talk about what an amazing doctor he is. We were privileged to find him! Thanks for all your prayers!
A family of six enjoying life and determined to spread awareness about Ectodermal Dysplasia, and our life with two children having EEC Syndrome
Tuesday, December 30, 2008
Phase 2 Dismissal and Home
We were dismissed this morning at 10:30 from Children's Mercy Hospital in Kansas City, MO. We came home and ended up home around 2:00. It feels good to be home. The other three boys did great while we were gone. Andrew spent two nights with our friends, Josh and Molly Budde. He of course was a jewel for them (didn't cry at all) then came home to us and showed his true colors. Oh well, we know he had a GREAT time --- thanks a bunch! Ryan and Tyler spent their first night in our basement having a slumber party with their uncles Kent and Gregg. Then Grandma Frankie came and spent Monday and Tuesday with them here at our house. They did awesome too! Grant is feeding much better and resting good (thankfully they sent the pain medicine home with us too). We'll see how the next couple days go but expect him to keep getting better. Here is a picture of him before we left the hospital.

We were VERY pleased with the care at Children's Mercy --- it was amazing! They truly do a great job caring for children and have the touch! It was a very good experience! We are glad for that as we will be doing the next step of the Cleft surgeries when Grant is about a year old and that will be at Children's Hospital too. We look forward to seeing the same staff again (we hope). Dr. Singhal did a great job and all the nurses talk about what an amazing doctor he is. We were privileged to find him! Thanks for all your prayers!
We were VERY pleased with the care at Children's Mercy --- it was amazing! They truly do a great job caring for children and have the touch! It was a very good experience! We are glad for that as we will be doing the next step of the Cleft surgeries when Grant is about a year old and that will be at Children's Hospital too. We look forward to seeing the same staff again (we hope). Dr. Singhal did a great job and all the nurses talk about what an amazing doctor he is. We were privileged to find him! Thanks for all your prayers!
Monday, December 29, 2008
Phase 1 Complete
The first surgery for Grant is complete. We are back in the room with him and he's sleeping! If you thought he sounded raspy before when he was breathing, now he really does. Due to the stints in his nose, he is unable to breath through his nose so has to breath through his mouth. He is doing that successfully. We will be here overnight tonight and expect to get dismissed tomorrow (the doctor will come in first thing in the morning). There is definitely a new look about him. Here are some before and after pictures. First is Grant on Christmas Day --- then before surgery picture. Last 2 are both after surgery. Notice the cute shirt we were given after surgery (My operation was "bearable" at Children's Mercy Hospital). We're sure he'll enjoy that souvenir when he grows a little bigger! Thanks for all your prayers!!!



In . . . and Out of Surgery
Well, it took me too long to get the computer hooked up. They took Grant back to surgery at 7:30,and we just spoke to the doctor (9:55) and he is out of surgery. He did GREAT!!! They said he'd be in the recovery room about an hour and then we'll get to go up to the room with him. We haven't seen him yet, but will post again after we do. Tried to get a couple pictures posted but couldn't so we'll keep trying.
Monday, December 22, 2008
Last Weekend
Last weekend was a big one for our family --- kind of busy also. Saturday morning Ryan had a basketball game. Once again, his team lost by 3 points (two weeks in a row) but they are improving each game. Ryan has made leaps and bounds since last year and is really doing well. Last week he scored 8 points and this week played great defense. He also played point guard through half the game --- who would have thought that.
Later in the day on Saturday we went to visit our new nephew, Ian Milo Huxman, born to Chris' brother and sister-in-law, Brian and Cori. He was actually born on Thursday, December 18 and is doing great. He is beautiful (of course we aren't biased) and looks exactly like his brother Luke when he was born. We now have two nephews put Chris' mother now has two sons of her own with 6 Grandsons --- she's like me and says she wouldn't know what to do with girls.
Sunday was the eventful day. In the morning, Grant David Huxman was dedicated in our church, First Mennonite Church in Halstead, Kansas.
In honor of the occasion, Ryan sang a solo "Use Me". The words were perfect for the dedication.
Chorus: Use me, Jesus use me; Take this life of mine, and use me.
Use me, Jesus use me; Keep me by Your side and use me.
Verse 1: All I want is to be with You, to ever please You in all I do.
Teach me Father to learn Your ways, and walk with me each day.
Verse 2: Mold me make me what You would have me be; I only want to serve You faithfully.
Help me Father to truly see what You have for me.
Ryan did an amazing job for his first complete solo song in front of an audience. Afterwards Ryan said to me, "Mom, it looked like people were crying when I was singing - why?" Let's just say there were many, many tears because it was a very touching moment to complete our dedication of Grant to God.
Then in the evening was the Kids' Christmas Program at church. Before they tell the Christmas story there is always a time for the children to perform. Tyler started everything off by playing the piano "Hark the Harold Angels Sing". I'll tell you what, no one could tell by his piano playing that the kid only has 3 fingers on each hand. He has really come a long way and does a great job. Ryan again sang a solo "O Holy Night" and did a good job. Ryan, Tyler, and Andrew were all shepherds in the pageant. I was concerned that Andrew might be a runaway shepherd, but he actually made it on stage the whole time he was supposed to (although at the end when he was sitting he was hitting the angels wings - whoops!)
It was a wonderful day filled with blessings and celebrations ending with the amazing story of Jesus' birth, and what a gift that one special birth was so many years ago. The true Reason for the Season!
Last thing, surgery update ---- Grant will be having surgery at Children's Mercy Hospital in Kansas City, MO on Monday, December 29 to repair his cleft lip. This will be a couple hour surgery, and will not begin any repair on the cleft palate (that will be at one year of age). We will be leaving for Kansas City on Sunday, December 28 due to the surgery being in the morning (not sure of time until this Friday). We will be staying in the hospital with Grant overnight on Monday and then plan to return home on Tuesday, December 30. Please keep all of us as well as the doctors and nurses in your prayers!
Later in the day on Saturday we went to visit our new nephew, Ian Milo Huxman, born to Chris' brother and sister-in-law, Brian and Cori. He was actually born on Thursday, December 18 and is doing great. He is beautiful (of course we aren't biased) and looks exactly like his brother Luke when he was born. We now have two nephews put Chris' mother now has two sons of her own with 6 Grandsons --- she's like me and says she wouldn't know what to do with girls.
Sunday was the eventful day. In the morning, Grant David Huxman was dedicated in our church, First Mennonite Church in Halstead, Kansas.
Chorus: Use me, Jesus use me; Take this life of mine, and use me.
Use me, Jesus use me; Keep me by Your side and use me.
Verse 1: All I want is to be with You, to ever please You in all I do.
Teach me Father to learn Your ways, and walk with me each day.
Verse 2: Mold me make me what You would have me be; I only want to serve You faithfully.
Help me Father to truly see what You have for me.
Ryan did an amazing job for his first complete solo song in front of an audience. Afterwards Ryan said to me, "Mom, it looked like people were crying when I was singing - why?" Let's just say there were many, many tears because it was a very touching moment to complete our dedication of Grant to God.
Last thing, surgery update ---- Grant will be having surgery at Children's Mercy Hospital in Kansas City, MO on Monday, December 29 to repair his cleft lip. This will be a couple hour surgery, and will not begin any repair on the cleft palate (that will be at one year of age). We will be leaving for Kansas City on Sunday, December 28 due to the surgery being in the morning (not sure of time until this Friday). We will be staying in the hospital with Grant overnight on Monday and then plan to return home on Tuesday, December 30. Please keep all of us as well as the doctors and nurses in your prayers!
Friday, December 12, 2008
We Are Moved!!!
It is official, we are moved into our new home at 11409 NW 72nd St. (for all you who might be sending Christmas cards ---- expect ours slightly late, maybe in the New Year).
Our wood floor in our kitchen and dining room had the last coat of varnish put on Thursday evening, so we weren't suppposed to walk on it for 48 hours. So, we started moving things in through our bedroom door Friday evening to the basement and the bedrooms. That was also the night we moved our freezer out of the basement of our old house (quite an ordeal --- it requires taking off boards on the porch and bringing it out through an old limestone stairway under the porch --- glad to not have to do that again!) Then Saturday morning we started with the other major pieces of furniture, including the old upright piano. It always takes a group of guys, as you can see in the pictures. The other interesting aspect for moving out of our older home was having to take bedroom furniture out the window onto the roof because the stairway is too narrow and turns too sharply. Enjoy the pictures of the furniture on the bale forks of the tractor. Saturday evening we finally moved our refrigerator and stove in --- all the necessities. Our first night sleeping there was Saturday. Everything went very smoothly and all our house things are in (although we still don't know where some of those things are!) We're slowly getting the house put together and are grateful for a large storage room in the basement for all the "extra" things.



One kind of sad story during the move, Andrew wanted to take a nap Saturday afternoon but couldn't find his bed in the old house. So, he cried all the way up the stairs, continued crying, and ended up crawling into the storage closet in his old room and laid down. Here's a picture of him resting in the closet - what a sad but cute sight!
Thank you, thank you, thank you to our friends and family that came out and helped. We couldn't have done it without you. We feel very blessed and are enjoying the "warmth" of our fireplace as well as the abundance of love filling our new home! Here's the view of the morning sun from our bedroom door.
Our wood floor in our kitchen and dining room had the last coat of varnish put on Thursday evening, so we weren't suppposed to walk on it for 48 hours. So, we started moving things in through our bedroom door Friday evening to the basement and the bedrooms. That was also the night we moved our freezer out of the basement of our old house (quite an ordeal --- it requires taking off boards on the porch and bringing it out through an old limestone stairway under the porch --- glad to not have to do that again!) Then Saturday morning we started with the other major pieces of furniture, including the old upright piano. It always takes a group of guys, as you can see in the pictures. The other interesting aspect for moving out of our older home was having to take bedroom furniture out the window onto the roof because the stairway is too narrow and turns too sharply. Enjoy the pictures of the furniture on the bale forks of the tractor. Saturday evening we finally moved our refrigerator and stove in --- all the necessities. Our first night sleeping there was Saturday. Everything went very smoothly and all our house things are in (although we still don't know where some of those things are!) We're slowly getting the house put together and are grateful for a large storage room in the basement for all the "extra" things.
One kind of sad story during the move, Andrew wanted to take a nap Saturday afternoon but couldn't find his bed in the old house. So, he cried all the way up the stairs, continued crying, and ended up crawling into the storage closet in his old room and laid down. Here's a picture of him resting in the closet - what a sad but cute sight!
Thank you, thank you, thank you to our friends and family that came out and helped. We couldn't have done it without you. We feel very blessed and are enjoying the "warmth" of our fireplace as well as the abundance of love filling our new home! Here's the view of the morning sun from our bedroom door.
Friday, December 5, 2008
Kids' Program
This time of year always brings about many Christmas activities. To get us in the Christmas spirit we attended Ryan and Tyler's school program Tuesday evening. Every year the 2nd - 4th graders do a Christmas play with music added for their program. The 4th graders are assigned all the parts each year and the 2nd and 3rd graders sing along with all the songs. This will be one of the few years that Ryan and Tyler are both involved with the exact same program. It was kind of neat! Our music teacher, Mrs.
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