I'm feeling a strong pull from the heart to make this important post tonight. I will start by confessing that there have been numerous times in the last year where I have been extremely angry with God. I've wondered how so many things can go wrong for one family (or different than I'd like), feeling like so many things have happened: having a 2nd child with EEC, many medical issues, dealing with EEC, trying to meet their needs, trying to meet the needs of the other 2 children, countless trips to KC, 2 major surgeries for the boys, loss of a job, etc. Not meaning to sound like I'm whining, but needing to explain my feelings. Then, things looking up --- getting my 5th grade job and feeling like things are going better again. Then . . .
This evening Tyler had a baseball scrimmage in Moundridge. After the scrimmage we went to the Babe Ruth baseball game that my brother Gregg coaches. We didn't get back home until after 10 with everyone needing to take baths and get ready for bed. After getting Grant out of the bathtub and beginning to try to feed him, I realized his obturator was not in his mouth (just some background --- he does NOT eat without it in, and it is a small appliance that covers the roof of his mouth to create an "artificial palette". This small items only costs $500 and has to be specially made in KC). I searched the bathtub, his car seat, the car, and determined that realistically it had probably fallen out at the baseball game. Well, time to go try to find it although I truly believed the chances of finding it were little to none and felt like I'd be looking for a needle in a hay stack.
Left for the ball diamond at 11:00 pm --- got there and left the car running with the brights on. Praying the whole way that some how I could find it. Looked where we sat, nothing. Searched the ground more, nothing. Went over to where Chris was standing before we left, was shining 2 flashlights on the ground, all of sudden, there it was smashed in the dirt, dirt all over in it --- hardly visible but some how I saw it. All I can say is that I truly believe I was not looking alone. I believe I had to be smacked in the head with this last disaster and unbelievable outcome to realize that God has not left my side, and is there watching over me as well as my family. It was truly a miracle that I was able to find it when I honestly had NO idea where it had fallen out. So, time for me to stop being angry, and focus on counting my blessings and all the great things that have happened because God is in my life. Praise the LORD!
A family of six enjoying life and determined to spread awareness about Ectodermal Dysplasia, and our life with two children having EEC Syndrome
Friday, May 29, 2009
Tuesday, May 26, 2009
It's Summer
The last event for school took place Wednesday evening when the Parents as Partners organization hosted Root Beer Floats and 4th grade recognition at the park. The whole elementary school was invited to enjoy root beer floats and then the 4th graders were presented with recognition certificates. It is a very informal event, but a great way to say farewell to all of them.
Ryan getting his certificate from Mrs. Kessler
All the 4th graders
Ryan with his "favorite" 4th grade teacher (ha, ha)
But now it has come --- summer is here. Time for lazy days, sleeping in, swimming, baseball, camp for the kids, more baseball, projects, more projects, time to spend with the kids, and of course harvest is just around the corner. Although I look at summer as a time to accomplish a lot and enjoy, it always seems to fly by . . . I'm sure this summer will be no different.
The biggest news was finding out last Thursday that Kaitlen and I would both have Full-time 5th grade teaching jobs. God always works in mysterious ways, and it happened once again. Kaitlen and I are excited to be teaching partners next year, but I am sad to see Molly Budde pursue her career in Newton because Ryan was excited to have her. Now he's excited to know he'll be in Mrs. Ortman's room. I am excited to start a new grade level and move over to the middle school with Ryan. There will be some work to get my stuff organized in the classroom, but it's also always fun to start a new adventure in education. I also feel blessed to be able to make this move with Ryan's class because they are a GREAT group of kids. Definitely ones as a teacher to feel great having 2 years in a row.
The only other major thing that has happened is Grant got his cast off last Thursday. Now he just has a little gauze wrap covering his hand until it is completely healed. It looks good and is healing more every day. He still loves to bang it on anything that will make noise, but I think he's probably glad it isn't as heavy as it was before.

He is crawling everywhere, and now has started pulling up on things to stand. He is VERY wobbly, but loves to stand there like a big boy. He's also had one adventure down the stairs (when is 2 year old brother pushed him down), and then I caught him with one hand over the edge of the top step the other day. It was almost his second adventure down the stairs --- whoo, glad I caught him.
The biggest news was finding out last Thursday that Kaitlen and I would both have Full-time 5th grade teaching jobs. God always works in mysterious ways, and it happened once again. Kaitlen and I are excited to be teaching partners next year, but I am sad to see Molly Budde pursue her career in Newton because Ryan was excited to have her. Now he's excited to know he'll be in Mrs. Ortman's room. I am excited to start a new grade level and move over to the middle school with Ryan. There will be some work to get my stuff organized in the classroom, but it's also always fun to start a new adventure in education. I also feel blessed to be able to make this move with Ryan's class because they are a GREAT group of kids. Definitely ones as a teacher to feel great having 2 years in a row.
The only other major thing that has happened is Grant got his cast off last Thursday. Now he just has a little gauze wrap covering his hand until it is completely healed. It looks good and is healing more every day. He still loves to bang it on anything that will make noise, but I think he's probably glad it isn't as heavy as it was before.
He is crawling everywhere, and now has started pulling up on things to stand. He is VERY wobbly, but loves to stand there like a big boy. He's also had one adventure down the stairs (when is 2 year old brother pushed him down), and then I caught him with one hand over the edge of the top step the other day. It was almost his second adventure down the stairs --- whoo, glad I caught him.
Wednesday, May 13, 2009
4th Grade
Each year in 4th grade, the students experience a Differently Abled Unit for a week. This is the week the kids look forward to all year. We focus on 3 different impairments: visual, physical, and hearing. Throughout the week there are many different simulations the students participate in: coin activity (identifying coins while blindfolded), unfair spelling test (either being blindfolded, ear plugs in, or dominant hand behind back), eating lunch blindfolded or going to music class blindfolded. Lunch is usually a big hit.
eating lunch blindfolded
We also have numerous guests come in throughout the week to give first hand experiences. This year a man from Newton came and talked about being in a wheelchair (when he was 21 he was in a car accident that paralyzed him from his stomach down), a sophomore at Moundridge High School who is hearing impaired came in and talked about what it is like to be hearing impaired as well as answering many of the students questions. Then we also had my sister-in-law, Cori, come and do a signing presentation since she is a signing interpreter.
To complete the week we have an afternoon of stations for the students to experience. We have a physical station (doing physical activities like batting a baseball, dribbling a basketball, jumping rope, etc while being blindfolded),
hearing station (experiencing a vibrating alarm clock which can also go off when a baby cries as well as closed captioning and instant messaging), smelling station (smelling 8 different items and trying to identify them),
Braille writing station (writing a message in Braille using glue and typing on a Braille typewriter),
feeling station (while blindfolded feeling maps, sand paper, and identifying shapes), and an obstacle course (maneuvering a wheelchair - going across bumps, through a narrow doorway, and up a ramp).
Today our last guest came in, Ms. Luka, a blind woman who lives in Salina, KS. She is such a fascinating person and is in WAY better shape and more active than I am. She told us she's been coming to talk with the 4th graders every year since 1991 - that is amazing too. Each child receives a packet from her that includes their name in Braille as well as other interesting information. In June she plans to go to Chicago, IL with her sister and 5 other friends to participate in the Breast Cancer walk (she will be walking 26 miles on the first day-a marathon, and 13 miles on the 2nd-a half-marathon). As I said, what a phenomenal woman!!!
As a culminating activity we always have groups create a list of 6 things to keep in mind when "meeting a differently abled person". We really hope the things we talk about during the week help instill an understanding that these students will take with them for life. Once again, we feel our differently abled week was a complete success. I was glad I was able to experience this with Ryan this year, as my last differently abled unit has concluded.
Tomorrow it is 4th grade field trip day as we are heading to the roller skating rink in Newton and then to Athletic Park for a picnic. Then Wednesday is Fun Day at school and the last day. Absolutely unbelievable that it is over and now my oldest child will be headed to the Middle School - I have a feeling tears will be shed by his mother:( But, as always, when one chapter in life ends, another one begins - Ryan's middle school years. I hope I'm ready as a mother:)
We also have numerous guests come in throughout the week to give first hand experiences. This year a man from Newton came and talked about being in a wheelchair (when he was 21 he was in a car accident that paralyzed him from his stomach down), a sophomore at Moundridge High School who is hearing impaired came in and talked about what it is like to be hearing impaired as well as answering many of the students questions. Then we also had my sister-in-law, Cori, come and do a signing presentation since she is a signing interpreter.
To complete the week we have an afternoon of stations for the students to experience. We have a physical station (doing physical activities like batting a baseball, dribbling a basketball, jumping rope, etc while being blindfolded),
hearing station (experiencing a vibrating alarm clock which can also go off when a baby cries as well as closed captioning and instant messaging), smelling station (smelling 8 different items and trying to identify them),
Braille writing station (writing a message in Braille using glue and typing on a Braille typewriter),
feeling station (while blindfolded feeling maps, sand paper, and identifying shapes), and an obstacle course (maneuvering a wheelchair - going across bumps, through a narrow doorway, and up a ramp).
Today our last guest came in, Ms. Luka, a blind woman who lives in Salina, KS. She is such a fascinating person and is in WAY better shape and more active than I am. She told us she's been coming to talk with the 4th graders every year since 1991 - that is amazing too. Each child receives a packet from her that includes their name in Braille as well as other interesting information. In June she plans to go to Chicago, IL with her sister and 5 other friends to participate in the Breast Cancer walk (she will be walking 26 miles on the first day-a marathon, and 13 miles on the 2nd-a half-marathon). As I said, what a phenomenal woman!!!
As a culminating activity we always have groups create a list of 6 things to keep in mind when "meeting a differently abled person". We really hope the things we talk about during the week help instill an understanding that these students will take with them for life. Once again, we feel our differently abled week was a complete success. I was glad I was able to experience this with Ryan this year, as my last differently abled unit has concluded.
Tomorrow it is 4th grade field trip day as we are heading to the roller skating rink in Newton and then to Athletic Park for a picnic. Then Wednesday is Fun Day at school and the last day. Absolutely unbelievable that it is over and now my oldest child will be headed to the Middle School - I have a feeling tears will be shed by his mother:( But, as always, when one chapter in life ends, another one begins - Ryan's middle school years. I hope I'm ready as a mother:)
Sunday, May 10, 2009
Successful
Thanks for everyone who prayed for our travels to KC on Friday for Grant's hand surgery. Your prayers were answered. We had thought we'd leave Thursday evening and spend the night up there, but decided to wait and get up early Friday to be in KC by 7:30 when we were to check in. We left home at 4:00 am (yes, for those of you wondering, it was right when the big storm hit!) It took us 5-10 minutes to drive one mile down our east road to get to the black top. We have NEVER driven in rain that hard before and could not see the road. After debating back and forth as to whether we should go or not, we decided to continue on. It did rain the whole way, but seemed very light compared to what we had experienced. We arrived in KC about 8:00 a.m., checked in and started getting prepped for surgery.
Then the nurse came in and told us our doctor had been "bumped" in the operating room due to an emergency surgery. So we waited, and waited,
Then about 2 hours after he was supposed to go in, they finally came to get him. The doctor thought everything went well, but she said it's always hard to know when they are under anesthesia so the true test will be after the bandage is removed. But, for now he has a boxing glove to use when Andrew gets too close (ha, ha).
After surgery anesthesia thought we should stay overnight for observation, but by 3:00 he was acting very normal crawling around his crib, banging his cast, etc. The doctor had given orders for him to be on bed rest and suppine (on his back). We said dream on to that!!! Our nurse Kelly agreed so called for a doctor to come up to discharge us.
So, at 7:00 p.m. we finally got discharge papers signed by a resident doctor, went to the pharmacy to get the Lortab prescription, and started the drive home around 7:30 p.m. We arrived home around 11:00 p.m. and were so glad to be able to sleep in our own beds. Sleeping didn't occur until around midnight so we had been up for 21 hours . . . Yes, it was a LONG day! Again, thanks for all your prayers. We go back in 2 weeks for the cast to be removed and then will have another follow-up 2 weeks later to begin to talk about therapy for the fingers.
Wednesday, May 6, 2009
Alright - it's time
OK, so I haven't been doing a very good job of updating and keeping people informed lately. Here it goes:
* Chris and I take Grant up to Kansas City tomorrow evening (Thursday) for him to have surgery on his hand Friday morning. They will be separating his fingers on his right hand (thumb and index). It will take a couple hours, but it is outpatient surgery. Since we are 3 hours away they are giving us an option to stay in the hospital overnight - we'll see. Chris says we'll be coming home Friday, but I think we'll play it by ear.
* Andrew is still very active and keeping me on my toes. His cutest thing today was talking to his Dad on the phone this morning on our way to town. "Hi Daddy. Are you at work Daddy? Love you Daddy!" Absolutely precious moments - and his phone conversations have improved immensely.
* Ryan just started baseball practice tonight, so busy times ahead. He's in pitching machine. I think it will be a good year for him and am excited to enjoy the evenings at the ball diamond. Tonight was AWESOME outside!
* Tyler was supposed to start baseball last night, but practice was rained out . . . so . . . they'll try again tomorrow evening. He will be in coach pitch. The biggest update for him is that he is starting to make some "walking" progress which we are very thankful for. Today at times, he was walking with only a small limp. We continue to encourage him and hope it continues to improve.
* Chris is working again this evening (16 hours) and worked last night (16 hours). The kids and I (as well as Chris) will be very happy when Thursday comes and work is over for this week. This isn't typical for him, he traded off Thursday night because of going to KC. 32 hours in a 48 hour period is NOT ideal for the worker or his family:o)
* I'm excited that tomorrow is the last day of work this week. I can NOT believe there are only 11 more days of school. They will definitely be busy days. Right now, there are so many projects started in my room, I hope we are able to get them all completed. Fun times at the end of the year. ALL ASSESSMENTS are OVER so I am CELEBRATING that!!!!
* Chris and I take Grant up to Kansas City tomorrow evening (Thursday) for him to have surgery on his hand Friday morning. They will be separating his fingers on his right hand (thumb and index). It will take a couple hours, but it is outpatient surgery. Since we are 3 hours away they are giving us an option to stay in the hospital overnight - we'll see. Chris says we'll be coming home Friday, but I think we'll play it by ear.
* Andrew is still very active and keeping me on my toes. His cutest thing today was talking to his Dad on the phone this morning on our way to town. "Hi Daddy. Are you at work Daddy? Love you Daddy!" Absolutely precious moments - and his phone conversations have improved immensely.
* Ryan just started baseball practice tonight, so busy times ahead. He's in pitching machine. I think it will be a good year for him and am excited to enjoy the evenings at the ball diamond. Tonight was AWESOME outside!
* Tyler was supposed to start baseball last night, but practice was rained out . . . so . . . they'll try again tomorrow evening. He will be in coach pitch. The biggest update for him is that he is starting to make some "walking" progress which we are very thankful for. Today at times, he was walking with only a small limp. We continue to encourage him and hope it continues to improve.
* Chris is working again this evening (16 hours) and worked last night (16 hours). The kids and I (as well as Chris) will be very happy when Thursday comes and work is over for this week. This isn't typical for him, he traded off Thursday night because of going to KC. 32 hours in a 48 hour period is NOT ideal for the worker or his family:o)
* I'm excited that tomorrow is the last day of work this week. I can NOT believe there are only 11 more days of school. They will definitely be busy days. Right now, there are so many projects started in my room, I hope we are able to get them all completed. Fun times at the end of the year. ALL ASSESSMENTS are OVER so I am CELEBRATING that!!!!
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