Indiana friends....

Hey all my long lost friends in Indiana...that might actually read this blog.....

Change of plans....It looks like on my long drive home from North Carolina next week, I am going to just take a little jaunt out of the way =) and head on up there to good old Indiana! How fun and exciting to be driving the freakin' country (yes, Marci, I said "freakin'" again) with my 3 kids!!! Really though....we are having a good ole' time here and everything went almost smoothly on the way out. We actually made it! It helps that I have 3 excellent kids and then half way through the drive Marci and kids were with us. Marci was a huge help being Cinderella as she put it while I did the driving! Her kids were great on the trip too!

Anyway - I was thinking that it is kind of impossible to get around to see everyone I would love to see in a day, so if anyone is up for a lunch or dinner play date at the park....send me a comment or email!! Tenetively, I am planning on getting in late Tuesday night, and hoping to see friends on Wednesday. But Chloe and I may be coming down with the sickness that has been floating around the house. So, we may have to postpone the trip home until everyone is well. We will not bring sickies with us (unless they are hiding and we don't know it....for that you could just blame it on Walmart! I always blame unexplained sicknesses on Walmart!) Anyway - let me know if you are around for a visit on Wednesday and spread the word! Can't wait!!

Crazy....just maybe!!

So...if you wanna know what the kids and I are up to for the next 3 weeks....well, hop on over to my sister, Marci's blog. I don't have time to do a post about it right now, and I like hers better than one I would do anyway....so.....enjoy. The kids and I are thoroughly excited though! NC, here we come!!!

Finally finishing up

Karleigh's fabulous doctor

Well, if you read my last post, you will know that I have been going through old files. It is helping me get through this period of missing and helping me remember. So, once again, I post for myself. By the way, my cousin asked in her comment on the last post what it was exactly that Karleigh had. If anyone is interested in knowing - I have answered that question in the comments from the last post.

Background on this letter....Dr. Elias was Karleigh's fabulous dr. at The Children's Hospital in Denver. She was the director of the Special care clinic and was also a geneticist. After Karleigh passed and they finally had official results from her autopsy and other tests, Dr. Elias called Chris and I to come in to meet with her to go over all the final results. We wanted to take the clinic something and help out in some way. We decided to frame the story Welcome to Holland and put a little engraven plaque with "In Loving Memory of Karleigh Ann Stimpson - October 16th to April 14th" at the bottom of the frame. That story has meant a lot to us - especially during that time.

This was the letter I wrote to Dr. Elias before that last appointment. I remember that appointment being SO hard. Not because of the information shared, but just that fact that this really would be the very last time we would be in that clinic! That was the very last time that I needed their help. That my girl really was gone, that I really would not be bringing her back. After spending the amount of time in that clinic that we did....it was just hard to let go. It was such a huge part of Karleigh's life! They were such a huge part of her life! I remember hugging Dr. Elias as we were leaving, bawling. She was crying too. I remember that it was physically hard to walk away that day. I have not seen those dr's since that day. It really was the last time I saw her. I will forever be grateful that we moved to CO when we did (right before Karleigh was born) so that we could be where we needed to be so that she could have the best medical care. It truly was one of a kind!



Dr. Elias – 6-6-05

There is so much I want to say to you, but I am not sure how to put it down on paper. There are so many feelings of gratitude and thanks that I have. If this letter is jumbled or doesn’t make sense, please bear with me. I can already feel the “cry lump” in my throat right now, and I haven’t even started.

Since about 3 months old we had been trying to figure out what was “wrong” with Karleigh. We were in a great deal of denial that there was anything seriously wrong with her. We didn’t know if it was her, or us. Were we doing something wrong? Our son, Zachary, was very ahead on everything in development and we didn’t know if this was normal or if she really was behind. Maybe we were just plain naive.

We were referred to Children’s rehab department to work with Kacey Larock. What wonderful help she gave us as she helped us get an appointment to see you in the Special Care Clinic. We met you when Karleigh was 5 or 6 months old. We were so scared that something serious was going on, which indeed it was. You started all the rounds of testing and trying to figure out what was going on. It was discovered that she was aspirating and then you gently talked to us about getting the feeding tube placed. We are so grateful for that! That little piece of plastic helped Karleigh SO much!

I remember sitting in the hospital room after she got out of surgery. She was so uncomfortable and in so much pain. But I remember, for the first time being able to rock my sweet little baby and having her cuddle with me. She had never been able to do that because she was always so uncomfortable. I was so excited for that and had waited 6 long months to be able to do that.

From that first surgery, there were many, many more tests and even had a couple more surgeries. There were many more “diagnosis’s.” I was very nervous to get the gj-tube put in last year, but you talked and talked to me about it and even helped me go talk to Dr. Hoffenberg about it. It helped tremendously in calming my nerves. What a great step that was in helping Karleigh to be even more comfortable and to develop even more.

When you had the test results back from Karleigh’s genetic testing (when she was about 8 months old), you asked for both Chris and I to come in and talk with you. We didn’t know why you wanted us both in the office. But I am so grateful that we could both be there to hear what was causing all that Karleigh was going through. I know I probably made you explain it to me like 3-4 times, just in that appointment. You were so patient and kind in helping me to understand what was involved in a Mosaic 5q deletion.

You worked on helping us figure out why she wouldn’t sleep. It was so hard when I had been up 10+ times a night for almost 2 years. I am grateful for the 6 months or so before her passing that she slept pretty descent. I had so much more energy to love her and play with her and do more to making her life better. I am grateful that you were there to help us with that problem.

There are so many more things that I could write that you have helped us with. I just have to give you a huge thank you for being patient with me when the “mamma bear” in me came out a couple times. I am sorry for the times I got upset and overreacted. I am so thankful that you were patient with me and understanding that I was just trying to look after the best interests of my daughter and that I was running on only a few hours of sleep, most likely. I am so thankful that you are so forgiving.

Chris and I are both so appreciative of you coming to see us in the ER the morning that our sweet little Karleigh passed away. What an amazingly hard time that was and we are so thankful you were there to comfort us. That was the epitome of the character you have as a loving and caring doctor and friend. You truly are a friend to us and not just ‘our daughter’s doctor’. Your presence at the funeral was nothing short of amazing considering the demands and responsibilities you have at the hospital. Thank you from the bottom of our heart.

We are so thankful for a loving Heavenly Father that has blessed us with having such a wonderful and sweet little girl in our family. Had we not had Karleigh, we wouldn’t have had the opportunity of meeting you and all the other wonderful people you work with. Our lives have been blessed and enriched because of all of you. We hope that our gift to the clinic will help others to see the beauty in their children and enjoy the time they have with them – even the hard times. We are so grateful for the work you do in helping so many to have the best life that they can – no matter what their limitations are.

We love you so much and will miss seeing you. If there is ever a time that we can help out there in the clinic or other places, please don’t hesitate to ask. Thank you again for all you have given us and for your friendship. But most of all – thank you for all the time and energy, love, patience and kindness you gave to Karleigh. I know she cared for you and loved you too. You truly are wonderful! Please keep in touch.

Love Always –

Christopher and Tracy Stimpson


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.

Life back then

I know most everyone won't know what this is all about or probably care too much. I have been going through old files tonight and found this instruction sheet that I typed up for Chris's mom only 9 days before Karleigh passed. Chris and I left Zach and Karleigh for the weekend and headed down to Colorado Springs, CO to help out at a conference for parents of special needs kids. It was interesting to re-read through these instructions to remind myself of what life was like back then. At this point in time, aside from her normal sicknesses that came and went all the time - she was actually doing quite well and was developing so much. Life was so different back then! Wow. If I am remembering right, this list of meds was actually smaller than the list of meds she was on when she was younger. (I am posting this for myself...if your wondering... If you do care to read on...there are some fun pictures at the bottom that I really enjoyed looking at tonight. They made me smile and helped me reflect on my life way back when.)

MEDICINE
04/05/2005
(Always vent before giving meds)

Phenabarb – 6 cc’s -- 2x’s/day (As of right now, Karleigh is not on oxygen at night)

Robinol – 2.5 cc’s – 2 or 3x’s/day

Prilosec (Omeprazole) – 10 cc’s – 2x’s/day

Baclofen – .5 (½) cc – 2x’s/day

Xopenex – 1 vial every 4-6 hours as needed

Tylenol – 5 cc’s every 4-6 hours as needed

Motrin – 5 cc’s every 6-8 hours as needed

FEEDINGS
(Nothing by mouth)

Morning – Set pump rate at 80 cc’s/hour
2 cans Peptamen Jr. + 15 oz. of water
(add ice block to pouch of bag to keep the formula cold throughout the day)

Bedtime – Set pump rate at 50-55 cc’s/hour
1 can Peptamen Jr. + 5 oz. of water

-- MAKE SURE TO CHARGE THE PUMP ALL NIGHT SO IT IS READY TO GO FOR THE NEXT DAY!!!

(If she doesn’t get all of the formula in by morning, it is ok. She will be fine.)

BEDTIME & NAPTIME

She will go down easiest if you spend some time rocking her or holding her. Then just lay her down with lots of hugs and kisses. Push the frog’s nighttime hand 6 times and it will play music for 6 minutes. If she cries, it is ok. But if she keeps crying (10-15 minutes), she either needs to be vented, didn’t get enough “cuddle time”, or simply isn’t tired. She will usually always wake up about 20-60 minutes after falling asleep. All she really wants is to be rolled onto her side. If you get in there when she just starts to wake up, it is easier to keep her asleep. Watch which way she is turning her head when she wakes up. If she has her head to the right side, then most always, she wants to be rolled to her left side – and the same with the other side. Put a blanket roll behind her to help stabilize her and keep her comfortable. You can also put a blanket folded between her legs or a small one for a pillow (about 1 inch high).
OTHER INFORMATION


Karleigh likes to have people around. She is most always happy if she is feeling well, and has someone paying attention to her. Try to keep her near someone.

She loves to go outside and go for walks, but has a hard time breathing in strong wind and cold air.

Make sure to push her heel into her AFO’s tight and then Velcro them tight. It will not hurt her, as they are molded to her feet. Her heel HAS to be held in tight, or she will get sores. She pushes her toes down and can get her heel out of position if it isn’t tight.

If she gets red around her stoma, clean it with soapy water and then put a 2x2 gauze pad around it. Tape the gauze together. Then put either aloe vera cream under it, or desitin, or mix the cream and desitin together. Then gently tape the pad to her stomach so the medicine doesn’t get all over.

Try to get her to be sitting in her wheelchair as much as possible. This makes her easier to move around, plus gets her off the floor. Make sure to tighten the strap very tight around her hips. If her hips are held tight, it gives her less of a chance to wiggle into an unwanted position. (you will have to tighten the strap each time you put her in the chair – it slips)

If you go in the car, roll some blankets up next to her to hold her in a good sitting position in her carseat.

Bathtime – Try not to get water in her ears. Also, DO NOT get it in her mouth.

To brush her teeth, lay her on her side and support her hands or face so she is not startled.

IF SHE GETS SICK….
Check her temp. rectally. Please call me if she is acting even a little bit sick, or just acting different!

She really does understand much of what you say!

My dream...

I seldom remember my dreams unless they are retarded and have really wierd stuff in them. There have been a few times where I have had some pretty powerful dreams that I know were not by accident. Last night, I was in and out of sleep due to my back being out of whack and hurting a lot.

But what is wonderful is the fact that I remember I had a special dream. I remember I didn't want it to end. I remember not wanting to wake up from it. Oh, if only that dream could have come true today! I don't remember a ton of it, but I do remember the feeling I had during it.

I don't remember where I was and only remember a bit of what I was doing. I remember standing somewhere with a friend. We were watching something very interesting, although I don't remember what it was. I then remember looking down and smiling at my beautiful Karleigh. She looked just as she did before she passed. She was the same size, same chub on her face, same darling gurgly voice, still with her disabilities, but oh my - so, so pretty! She was as happy as can be and was laying on something soft. I remember I looked down at her, smiled and then looked back at what the friend and I were watching.

All the sudden as I was watching what ever it was, I remembered.....Wait a minute....what am I doing?!! I have my darling Karleigh right here and I am not even paying attention to her!! It was as if I had dismissed the opportunity to spend with her because I was so focused on what I wanted to watch. Upon realizing this, I quickly knelt down, scooped her up and held her tight. We talked, she smiled - a lot, I looked into her crystal clear eyes, I told my friend things about her as I held her, I loved on her, I felt her touch and warmth.

It was not that long that I got to be in this dream holding my girl before I woke up. But the thing that aches today as I think about that dream is the fact that she was my warm (and alive) darling little girl - in a dream. She was filling my empty arms - in a dream. She was comforting my aching heart - in a dream. She was in a dream! Oh, how I wish I could have her here to hold today. Today it almost feels like I was holding her in my arms all night - like you know when you hold something for a long time and then you finally put it down and you still feel like you have it in your arms. That is how my arms feel. They feel like they should be holding her and taking care of her today.

It has been a while since I have had such a strong aching to hold her in my arms - for real. Of course there is not a day that goes by that I don't think about her and long to hold her. But time has a way of helping make the ache of not holding her subside just a bit and accepting that I can't have what I want right now. But today, after my dream, the ache has returned a little stronger and I will just try to fill that ache with my other squishy kids and not dismiss the time I have with them - today, right now. I will try to not let it wait until after I am done with something that really isn't very important. (She was laughing as I tickled her in this picture. I love how she was intently looking at me as I tickled her. This is how she was in my dream last night, although I was the one holding her.)

I am grateful that I was able to have my sweet girl in a dream. After you loose someone, you long for the time when you get to have them in your arms again - even if it's just in a dream. At least I know I do. I have only had a handful of them and have been grateful for each of them. Dreams do bring the hurt back a little stronger and the longing to hold her a little more intense. But I guess that helps me to know that I really haven't forgotten everything. It also helps me to know that she really was here and I really did get the fabulous opportunity to care for one of Heavenly Father's choicest spirits! I long for the day to hold her in my arms and although I ache a little more today, I am grateful that I at least got to hold her in my arms - in my dream. I have longed for that too, and last night, that silent prayer was answered. I am grateful and blessed. My Karleigh is beautiful and is my angel. I love you, sweet girl.

It can't be....

This darling little baby (and I do say baby for a reason!) is a big old ONE year old!!! I am really not liking this - no, not one little bit!! He is my baby!! He has been such a fabulous baby and has just melted my heart! He has such a sweet spirit about him. He has been a super cuddly little guy and I pray that as he gets older that he will continue to be.

I don't like the fact that he is starting to act like a boy instead of a baby! He walks everywhere now. He says some words. He eats a lot (can ya tell?). He goes down the tube slide at the park by himself on his tummy - face first! And just this week, he figured out how to throw his arms up and twist and contort out of my hands so he can get free and go where he wants....usually the stairs! He climbs stairs like a champ, but thinks that he can either walk down them holding onto the railing, or that he can just go down on his tummy - face first!! So far (knock on wood) there have been no major crashes, and I hope we don't have any!

His birthday celebration on Thursday was small - just us! He opened a few presents and then got to dig into his first birthday cake!! Yes, I realize it kind of a looks like a big mound of poo, but it tasted yummy! (if you have time, read that link from my sister. Guess us Clay girls have a talent for poo-looking treats!) I didn't have time to make a fancy-scmancy cake - so...that's what he got! Does he really care though - uh, no.

Totally love this last picture....taken by Zach at the end of his poo cake fun!

I think another reason that I had a hard time was because it was only a year ago that I was seeing this little tiny face! Only 365 days and now look how big he is!!

It also didn't help my longing to keep him little by seeing pictures of another darling little new baby!! I am a proud aunt this week! Parker's birthday was shared with his new cousin, Weston Ross Buckwalter! This is my older sister's 3rd (she has twin 4 year olds)! Kamyrn and Carson look like they are in heaven - especially Kam!! He is absolutely darling and looks so sweet! I am in love with his hair! I get to go see him in a couple weeks!! SO excited!

A couple days later, on the 20th, I had another little nephew born! This time it was Chris's younger sister, Kimberly (who also happens to share a birthday with Parker!). She has 4 little girls and just had her first little boy! He is a doll and if only I wasn't so technologically challenged, then I could figure out how to copy her pictures from my email and post them as well. Kim and Tyler have darling kids and I am so excited that they finally have a little man!

Good job on the babies, Mindi and Kim! And Happy Birthday to my baby....my one year old baby!!

Success!

Chris's surgery went well and he is handling the pain ok. In about 3-4 weeks, giving his head and ear time to heal, they will then turn on the implant. There will be lots of adjusting to that, but hopefully all for the best! Thanks for all the prayers!!

Surgery #2

I am sitting here typing this post on Chris's mini laptop that he uses for his video relay (phone assistance). I am grateful to have something that can help keep my mind off of today's happenings. I am looking out the window of the Mayo Hospital here in Scottsdale, AZ. There is a hot air balloon taking off and cars rushing down the interstate. It is an overcast day, but still looks like it will turn out to be a beautiful day outside.



Right now as I type, Chris is in surgery. He is having his second cochlear implant placed into his right ear. The first surgery was back in May 2009 on his left ear. Overall, the first one was a success and it has really improved Chris's hearing. His brain though, is still so overwhelmed with two different types of sounds - one from an implant and one from his normal digital hearing aid. It has made certain things difficult. Chris (and his audiologist) are very hopeful that by having both ears hearing the same and having it be such a better sound and more imput to his brain, that things will just get better and better. Boy, I sure hope so! We are so fortunate and blessed to have the insurance we have! The first surgery alone cost over $90,000! Ouch! And that was just ONE ear! We only pay a fraction of the cost, but it is very worth it if it can improve his quality of life so dramatically.



I told Chris last night that I would love to just snap my fingers and make him hear normal. I hate having to see him have to go through so much just to have a basic function that I take for granted everyday. But then I thought about that comment later. As much as I would love for him to hear normal - obviously Heavenly Father blessed him with a hearing loss for a reason. Would he be the person he is today without his hearing loss? Have all the years of struggling helped give him the determination he has needed to excel in his life? I would like to say yes and am pretty certain his parents would agree. He has had to push through much opposition and go through much in order to be where he is today. It is my prayer that this surgery will only enable him to continue on with that drive and determination to be the best he can be and to do all that he can to reach his goals. I am certain it will. Will it be easy - no. Easier - hopefully.



As I sit here typing, I still have those "I'm nervous and a bit scared" butterflies in my belly. How can I not? My husband is having his head cut open! But, at the same time, I think I am just trying to put those aside and just stay calm. I feel extra emotional - maybe due to the fact that I am not feeling well and I got about 3 hours of VERY interupted sleep. That is not a good way to start a stressful situation.



I know that this surgery is not nearly as emotional for me as I remember last surgery being. Last time I was so anxious and nervous as I had no idea what to expect. (It probably didn't help that I had a 3 month old at the time that I had to feed and entertain in a little waiting area for about 7-8+ hours.) I am confident though that he is in good hands and will be well cared for. He has the same surgeon and same team working on him as last time. They were very good to him last time. I think the only thing they are doing differently is give him more pain meds. He ran out too quick last time! And this time....he WILL be taking them!! That was one of the hardest parts - for me anyway! Some dumb resident dr. freaked him out about taking meds that he was nervous to even take motrin or tylenol! Stupid!! He freaking has his head cut open and won't take pain meds after the prescription ran out because of what that lame-o dr. told him. Chris ....be forwarned (if you read this)....your wife-nurse will be hiding them in your food if you won't take them! =) I do not want you to be in the kind of pain you were in last time when there is something that will help - even a small amount!

Thanks everyone for your prayers and love. Please say some more!! Thank you to all who have helped with my kids (at 4:30 in the morning!!) and offered to bring meals. It is hugely appreciated and we are so grateful for your kindness and service! I will update again later when I know how everything goes.

Zach