Welcome To Holland

This is a very inspirational story that I read a few days ago and want to have here so that I can always look back and remember how lucky I am to have the chance to raise a celestial child. I think this story also applies to so many times in our lives when things don't go quite how we planned. Hooray for Holland!

WELCOME TO HOLLAND
byEmily Perl Kingsley.
c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy.

All my life I've dreamed of going to Italy."But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Two Great Phone Calls

This evening we got two great phone calls. Both regarding Bryce. The first one was from the couple who referred to themselves as Bryce's fairy God Parents. They are the volunteers who will be Bryce's wish granters from Make-A-Wish. They asked if I had a few minutes to talk, I told them that I did, and an hour later we scheduled a time for them to come over and meet with us. They started off the conversation asking me all kinds of questions about Bryce...favorite TV shows, favorite toys, movies, colors, clothes sizes, all kinds of questions about him. They then asked me the same questions for all of the other children. After that they asked what Bryce's favorite thing to eat is. Well, he doesn't eat much at all by mouth right now, but pizza, mac and cheese, yogurt, and grilled cheese sandwiches have always been favorites. They asked about treats and I said ice cream. They then asked if the other boys liked those foods and if they had any certain candy or drinks that they especially like. After asking all of the questions they said that they would like to come out one evening and bring us dinner and a few gifts for the kids and talk to Bryce and us about his wish. So we set up the date for this Friday evening...March 5th! They sound so nice. He is actually a fire fighter here in Queen Creek. They even talked to Bryce on the phone and told him who they were and that they would be bringing him his very own pizza and some toys and that they can't wait to meet him. They told me of a website to look at with Bryce to get some ideas of what he might like as his wish. I sat with him and the other boys and looked this morning. It was fun to see his face light up as we talked about different possibilities. Friday should be a lot of fun for all of us. I have decided that one day, probably after our kids are raised I would love to be a volunteer for Make-A-Wish. What a neat thing to do!

The other phone call came while I was talking with Jeff from Make-A-Wish. It was Bryce's Occupational therapist. She said that she and been in touch with the PT that would be doing Bryce's evaluation for his communication device mount and that they could both come out on Monday afternoon to do the evaluation. They had told me last week that the PT would not be able to get out here until the end of March, so I am very pleased with that. Hopefully that will go well and we can get that moving again.

Today's Appointment

Today it was Annalise's turn. She is now 9 months old. Unbelievable! She is doing great over all. She is in the 5th percentile for weight, 15th for head, and 70th for length. She is moving along the chart in each area, so it's all good. Her iron was a little low, but now that she can start eating meats and cheese and all that, it should be fine. It was funny because the Dr. asked at the beginning of the appointment if she was rolling over both ways now and starting to get onto all fours. It took me a minute, but then I realized that she meant just doing those things. Well, she has gone way beyond that! I told her that she is crawling all over, and pulling herself to a stand. She has also begun to take steps while holding onto someone's hands. She is definitely on the move. Luckily at this point she is developing very well.

The fluid in her ears is the only thing that does not seem to be moving on that girl. She has had three ear infections (same ear) in three months and the fluid was still sitting there today. We'll be going back in to check her ears in two weeks. If the fluid is still sitting there, we will be going to see an ear, nose, and throat specialist. Hopefully we will be able to avoid that route. I'll let you know.

So her next well check will be at 12 months. I can't believe it has been almost a year since she was born! She has been such a blessing in our home!

Surgery and Mom Coming!

So after waiting over two hour to get in to get x-rays done of Bryce's hips and back, we saw the orthopedic doctor. The wait wasn't the worst part of the appointment though. We found out that even with all that we have been doing to help Bryce's hips grow in correctly, they have not. When he was in 6 months ago, they were about 10-15 percent out of the socket, today they were at about 50 percent. So, he is going to have to have surgery to help correct that. It probably won't be until September. He will be in the hospital for a couple of days and then be in a cast for about 6 weeks. =(

On a good note though, my parents are in town. My mom is going to be staying with us for a few weeks to help out. I am very excited to have her here to help.

Amazing Jakes

This post is a bit overdue...but better late than never I guess! Back in mid January, John got a raise at work. To celebrate, we decided to go with some friends to a place here called Amazing Jakes. We enjoyed a buffet dinner and bowling. We decided not to do all the other games and activities they have there due to time and wow, the cost. We'll go back some other time to enjoy it when we have a little more time to do so. We sure had a great time with the Petersons though. We'll have to do something with them again soon!

We were in a room where they were showing a movie during dinner. Bryce enjoyed the movie.

Kaitlyn enjoyed feeding Annalise.

Getting ready to bowl.

Spencer found his ball.

Bryce enjoyed cheering each time someone would throw the ball.

Nathan

William

John and William bowling together

Spencer found it much easier to bowl while on his knees. He did it this way the whole night.

Kaitlyn

Jacob


Nathan enjoyed sliding into his roll!

The kids all kept themselves busy while waiting their turn.

Layne and Becky Peterson with John and Annalise


We had so much fun!

Annalise just loved getting more attention than anyone really needs!

Dr. Narayanan's Response to the Netherland Email

I received an email today from Bryce's current neurologist, in response to the letter from Dr. van der knaap. This is what he had to say:

Hi Mrs. Clayton:Thanks for sending me the letter from Dr. Van der Knaap. She is clearly an authority on leukodystrophies, and I agree with some of the things she has said - that this is not a typical leukodystrophy. However, I think Bryce clearly deteriorated in his development, and has neurological signs of white matter disease. It may be that the primary problem is neuronal in nature, rather than being primarily a destructive process that affects the white matter. Dr. Terri Grebe (also in Genetics) is helping me with the neurogenetics clinic at CRS, and I will ask that Bryce be scheduled in that clinic for us to both review all the testing to date, and see if there are things that we should be investigating that have not been done.Vinodh Narayanan

UGH! I wish we could get this figured out!

Today I also went and made 1149 copies. This is 3 sets of Bryce's records. I will be sending them to SLC, Massachusetts, and Florida to doctors there who are willing to take a look at them.

Backtracking--Talent Show and Field Trip

Aside from all the normal daily activities, we have had a few others that I haven't gotten a change to blog about. Since I have a few minutes here while Annalise is sleeping and the boys are all at school, I am going to backtrack a little bit and get a few things in here.

First, we'll go back to Monday February 8th. This was the night of the school talent show. My boys hadn't tried out for it since originally it was going to be on a night that we already had something planned. However, William's friend Nicole had tried out and was going to be singing "Popcorn Popping on the Apricot Tree" in the show. On Friday afternoon she asked William if he would play for her. He agreed! Until that time, he had never played the song, but with some practice he was sure he could do it. So he quickly learned the song and on Sunday Nicole came over and they practiced together. Monday night came and they were both very excited. They practiced on the piano there and did quite well. During the performance, William got a little nervous and struggled a bit, but they got through it. I was so proud of both of them for getting up on stage and performing. They are way braver than I am!!! William has already picked out what he wants to play for next year's show!

Don't they look great?!


Practicing before the performance.

During the performance.

The following day was the third grade field trip. William really wanted me to go this year and so I finally agreed to sign up. His teacher picked 4 parents to go with them out of all that had signed up for it and guess what...I was the third parent picked. William was elated!!! Me...well, I hadn't ever been so I guess it was my turn. So that morning my sister came down and watched the little ones for me and helped with Bryce's therapies that day and I went off to the Mesa Art Museum to watch Peter and the Wolf with a bunch of third graders. It actually ended up to be a nice time to spend with William and get to know some of his friends this year. It's nice to have an idea of who he is talking about when he tells me things about school.

William on the bus, all ready to go!

Aaron and Devin, a couple of William's friends that were in our group.

Waiting in line for the show. There were a bunch of schools there that day. Here are a few more friends of Williams. Dawson, who William always refers to as "the one boy who is shorter than I am", Aaron, Issac, and Carl. They are all very nice boys.

We ended up waiting for about a half an hour after the show for the buses to show up. I'm not sure what happened with that, but we had a bunch of bored kids who needed to go to the bathroom standing in the middle of a parking lot nowhere near a bathroom. We were a little concerned, but we made it home without any accidents! Also my iPhone came in really handy as we played games on it while waiting for the bus.. The kids all loved it and William's teacher kept thanking me for keeping everyone entertained.

February 16--First Day at Patterson Elementary

So yesterday Jacob and Spencer became official members of the Patterson Pride! They are now going to Patterson Elementary in the Chandler school district. I know this seems really sudden, but it is something we have been tossing around in our minds for a while. There are a few reasons for the decision, but the main one is that this is what feels right for our boys and our family at this time. A lot of thought, prayer, and looking at all of our options went into this. It is tough to make a big decision like this, but I really hope it will work out well for them. William is still at Benjamin Franklin charter school for now and totally thriving this year.

Two very excited boys on the first day of going to their new school.


They both wore sweats on the first day...mainly because they could. Jacob loves that he can choose what he wears...even to school.

Spencer now goes to all day kindergarten. So far, he loves it and seems to be fine with being there all day! He was so excited that he would be able to have lunch at school like his big brothers.

Here we are in front of the school. Jacob was really nervous at this point. He kept saying, "but I'm shy. I don't have any friends here." When he got home, he announced that he has 17 new friends! That's my Jacob. Shy?...not for long!

Yesterday I took the boys to school and they rode the bus home. Today I let them ride both ways. They loved it. Yesterday, Jacob was a little hot riding the bus home so he decided that he would wear shorts to school. He was fine at school, but waiting for the bus this morning was a little chilly. He and Spencer decided to share my jacket until their bus came.

Getting on the bus, heading for school. They climbed right on without even looking back. I can't believe how grown up they are getting to be. Seeing his brothers get onto the bus made William wish that he was going with them. Some day, some day!

So we now have 4 children going to 3 different schools. It appears that simplifying my life is not a talent of mine! =)

It was really strange to walk home with just Annalise. I don't know what I am going to do when I send my last child off to school for the day. Although I must admit I like my bit of quiet time in the morning, I miss my babies while they are away.

Today in a Nutshell

Sooo much has been going on and so many things I need to blog about, but I don't seem to be finding the time to get things down. Today was a little stressful as it was nonstop and a few times I wasn't sure I could get everything done in time to meet the next item on the agenda. However, somehow everything worked out and although I am exhausted tonight, I'm glad that what got done today, got done. I'm too tired to go into details now, so I'll just kind of list today's basic activities and fill in the gaps tomorrow(hopefully). Later in life, when I am bored and sitting around wondering what I should do, I want to be able to look back on what I did during these crazy times.

It started with getting everybody ready for school
took Bryce to the bus stop
came home and had hot cocoa with the boys, trying to warm up from being outside.
made little autograph books for the boys to take to school with them
got William, Jacob, and Spencer out the door with all of their book reports, reading logs, projects and Valentine cards.
Called and got a Dr. appt. for Annalise.
Fed and bathed Annalise.
Left for Annalise's appointment.
Put gas in the van (I had been on E for a couple of days)
Picked up Valentine treats for William's class at school...the brownies I had planned on just weren't going to get done in time!
Saw Dr. Nason and found that Annalise has yet another ear infection and some type of bacterial infection on her bum. Poor baby.
Took enrollment papers over to the new school where Jacob and Spencer will be going beginning next week.
Came home, strapped Annalise onto me and headed down to pick Bryce up at 11AM.
Came home, fed Bryce and Annalise
welcomed Spencer home from school
fixed lunch for Spencer
put the little ones down for naps
let Spencer show me all of his "treasures" he got from school
switched the laundry
took Tylenol for a throbbing headache
loaded everyone up into the van and headed out again.
Went to Ben Franklin charter school to sign the withdraw papers for Jacob and Spencer and to drop off the treats for William's classroom.
Dropped Annalise's prescriptions off at Walgreen's
took the withdraw papers back to Patterson Elementary (the boy's new school)
Went back to BFCS to pick up William and Jacob after school. We got there about 10 minutes before the bell rang and while we were sitting there, a firetruck and an ambulance drove in with sirens on. I don't know exactly what happened, there is a lot of speculation, but one of the students had to be taken away by ambulance. So we had to park and get everyone out and go up and get the kids.
Got everyone back into the van
headed back to Walgreen's to pick up Annalise's meds
dropped off Nicole
went home
switched laundry again
fed B and A
made dinner (mac and cheese) for the older boys
picked up the babysitters (yes, it takes two when we leave all of them home...and John actually did the picking up)
changed clothes and headed to the church for a dinner and dancing enrichment date night which was actually a lot of fun...thanks to the great couples there.
returned home to a house full of mostly sleeping kids
got William into bed and
sat down here to blog...but I'm falling asleep at the computer, so...
Now I am off to bed! Oh, how I hope Bryce and Annalise sleep better tonight then they did last night!

Follow-up on the Bus

Well, Bryce has survived his first week of riding the bus...and no tears at all today! On Monday when I picked him up at the bus stop, the driver told me that he had cried until she began driving, then it turned to a laugh/cry, and soon was all laughing and smiling. On the way home from school, he actually fell asleep. Then Wed. he cried a little bit as he entered the bus, but then was fine, and today he was smiling the whole time. I guess he was giggling as he watched all of us waving and calling good-bye to him. I think it is really neat that he leaves before the other kids so that they are able to be a part of the morning send off. It has actually been kind of nice. We all get ready to go by 7 am and then head down to the bus stop. Usually one of the boys ride a bike and one pushes Bryce in his chair and another pushes Annalise in the stroller. We have a few minutes to play around at the bus stop while waiting for the bus, and then head home. We typically have about 30 minutes before the older boys get picked up, and during that time we just do something fun and relaxing together. It makes it nice to not be running around looking for shoes or homework or whatever right before they leave.

As for preschool, Bryce has just finished his third week and he continues to LOVE it! He comes home very tired and according to his teachers, he "plays" hard all morning. I'm so glad that it is working out well. So now he goes to school M,W,F and has in home therapies on Tuesday and Wednesday. With that and naps, he doesn't have a whole lot of extra time, but I think it is a great use of time for him!

Riding the Bus

Well, we sent Bryce off to school this morning for the first time on the bus. It was harder than I thought it would be! His bus comes at 7:20 and since we live tucked in like we do, we have to walk out to Grapefruit rd. for him to catch the bus. We have been talking up riding the bus and each day when I would pick him up, we would watch as the buses pulled out of the school. He always gets so excited. This morning was no different. All the kids and I got ready early and headed out to the bus stop together to see Bryce off. He was so cute and so excited when we talked about it.














When he saw the bus coming, I thought he was going to jump out of his chair with excitement.



















Getting up with the ramp. Now this is what we need in our van!!!


However, I guess I forgot to tell him that he would be riding the bus without the rest of us.


As he went into the bus, he began crying so hard! That is when my heart sank! Oh, how our child's tears can have such an affect on us!!! I wanted to grab him off right then and take him in my arms and tell him it would be OK, but instead, I kept a smile on and the boys and I just kept waving and reassuring him from where we were.




He comes home in two hours and I can't wait until it is time to go pick him up from the bus stop. I hope he did well and settled down once the bus got moving.

Fun with the Camera

Yesterday while my sister was here, we decided to have some fun with my kids. I have been wanting to go get their pictures taken with the boys all dressed in jeans and white polos and Annalise in her cute little pink shirt and jeans. We weren't able to take them anywhere yesterday because by the time I got around to making an appointment, it was too late to get in. So instead, we picked up the kids from school, had them all change into their "picture clothes" and went out to my new workshop (more on that soon), and just had some fun. The pictures are far from perfect...I am not a photographer and my camera sucks! (have I mentioned how much I want a new camera???) But, you will definitely see some personality here!



Annalise does not like wearing anything in her head right now!

The boys all wanted to do some silly pictures, so here they are!

William

Jacob

Spencer

Annalise has the best laugh ever and the boys love to make her giggle!

You may disagree, but I think my kids are the best kids ever!!!! I love them more that I can say...more than I ever knew I could! I am one lucky mom!