(FYI...Since this post some how got posted before I was actually done...I will finish it by summing up the trip....It was a success. We found a home to move into and we made it home after a very long day of travel to find the kids happy and lovely, all thanks to my wonderful mother who takes such good care of them. Thanks, MOM!!! We love you so much and miss you all ready. The movers come next week to pack us and we head out the first week in June! Yikes....so quick!!! (normal for us though...) I will post pictures after I get them downloaded on my computer.)
Have you ever wanted to travel the country and see different sights and experience different cultures? When I was growing up, I lived in the same house and same town since I was about 2 or 3. I lived there until I went to college at 18 years old.
I think I was a little naive when getting married (about a lot of things, actually) that the profession Chris was going to school for would not keep me in the same place. Construction Management - you go where the jobs are. Yeah, I guess that didn't quite click in my mind. It has taken a while for it to click, to be honest.
Moving can be kind of rough on my mental state for a bit. Maybe that is partly due to the fact that we have moved 5-7 weeks before I gave birth to 3 out of our 4 kids! That really wasn't fun being so pregnant and moving. Luckily, we were blessed with movers for most of our moves, so that took a huge burden off my shoulders. But, I guess it was probably easier moving with a baby inside of me than one extra kid to take care of while moving and unpacking.
So...as you may have guessed by the topic of this post...yes, we are moving again! And no - I am not even pregnant this time!! Fabulous!!! I may be able to get things unpacked in a few weeks instead of 6 months (or longer!!). Chris has accepted a job in Portland, Maine and starts the first week of June. Yep, we are once again quickly getting things figured out to be able to get out there when we need to.
Chris and I are actually on our way home right now from a house hunting trip. I cried multiple times on the way here and during the trip because I miss my kids - A LOT! This was my first time being away from Parker and I think it was only the second time being away from Chloe. They wonderful, fabulous thing was that my mom was able to come out and be with them the entire time we were gone. They have had a fabulous time with her! Trips to the park, baking with Grandma, and just having lots of fun! I think my mom will be wiped out after chasing Parker-pants around everywhere!
The trip was....well, stressful. But we did manage to take some breaks and enjoy ourselves. Chris took me on a nice date on Friday (since we didn't have any appts.). We went to the Portland Head Light, which was beautiful. Then went to dinner at DiMillo's Floating Restaraunt and I was brave enough to try crab and lobster. It was a yummy dinner and we enjoyed our time together very much.
Tuesday, May 18, 2010
Friday, April 30, 2010
Becoming A Doctor
Joy (my sister) did a fabulous job on her report and project about Karleigh and her disorder. She sent me a copy of her powerpoint that she made and it was fabulous and even made me cry. Joy truly is a very special girl and is going to do great things with her life! She has already done many great things with her life!! She is wonderful and I love her very much! Since I am not that talented at the computer and can't seem to figure out if there is any way to load her powerpoint on here, I am just going to retype the part that made me cry the most (yes, with Joy's permission)."Becoming a Doctor"
By: Joy Clay
(2007)
(2007)
April 14, 2005 was the day my life turned around. I got ready for school, but I had already missed the bus. My mom was going to take me and she was almost ready to go. As I walked down the stairs the phone rang and my mom answered it. A few seconds later I saw her tear up. A few more seconds later I heard her say, "Poor little girl." As soon as she said those three words I knew something was wrong.
A couple more minutes later she hung up the phone and with tears in her eyes she said, "Karleigh is having a hard time breathing and she's having seizures. They had to bring a helicopter to get her because an ambulance would take to long." I started to cry. A rush of sadness just fell over me. I was scared and I didn't want to go to school.
My mom drove me to school and she told me that if I couldn't handle it any more she would pick me up. I walked into my classroom crying and my teacher told me to go to the school counselor. I couldn't stop the tears from coming out of my eyes. My school counselor was very kind and she helped me be happier.
A little while later, the school counselor asked me if I wanted to call my mom and see how Karliegh was doing. I called her expecting a positive answer and she said, "Not to well." I had a melt down again. I don't think I've ever cried as much as I did that day. I decided that I could go to gym class. A couple mintues into class the office called and said, "Will you please send Joy Clay to the office."
I left class and when I entered the office I saw my mom crying. She gave me a long hug and said, "Karleigh died." I remember being so sad but not being able to cry because I had already cried all my tears out. We walked to the car where my two brothers waited, crying.
The next morning we got on an airplane and went to Colorado. A couple days later we had the funeral. I remember falling apart when I saw her in her casket. I never though that this would happen to me.
After the funeral I decided that when I grow up, I would become a doctor that works with the disabled children like Karleigh. Karleigh is the person that inspires me to pursue my dream job.
Tuesday, April 27, 2010
What other choice is there but to.....
LAUGH!! (hopefully soon)
So, I haven't had a one year old little boy in well...about 9 years now. I forgot what little troublemakers they can be! While being the sweetest and cutest little one year old around...oh, he can try my patience and my sense of humor.
So, I haven't had a one year old little boy in well...about 9 years now. I forgot what little troublemakers they can be! While being the sweetest and cutest little one year old around...oh, he can try my patience and my sense of humor.Saturday I had made a goal in my mind that no matter what, my house was getting cleaned from top to bottom (almost), even if I had to stay up all night. Life has been busy and aside from straightening up, things were getting pretty crusty around here! SO...time for a serious cleaning. The whole family pitched in and we got it done. Floors were vacuumed, swept and mopped, kitchen cleaned, bathrooms scrubbed, bedrooms cleaned and dusted, etc....you get the idea. Everything was clean, not just tidy. Oh, it felt good. My mind can now let go of that nagging feeling that my house is crusty and needs attention and now I have given myself permission to do some fun stuff this week. (Yes, I have a mental block on doing fun stuff if my house is crusty!)
Well, I didn't think that only 3 days later, I would be scrubbing the kids bathroom AGAIN! So, here is the story. Like I said before....I have a one year old. A very busy one year old that is also figuring out that he has an opinion and can voice it. He is also quickly figuring out that he is just about as big as his older sister (who is almost 3 years older than him!) and that he can get a reaction from her...almost by just looking at her or standing right next to her in her personal space!
I filled up the tub, got both kids in and then dumped their toys in. As they were playing and splashing and having a great time, Parker would occasionally reach over and pinch Chloe - his new favorite thing to do to her. She would shreak, tell him no and they would be back to being friends again.
I stepped out of the bathroom for just a minute and was just right down the hall when I heard Chloe yell, "MOM! Parker just pooped in the bathtub again!!" Yes, this has happened before! As I was coming back down the hall, I told her to jump out of the tub, which she already had....since she knows what to do....since this has already happened a couple times!
There was my boy, my one year old fabulously cute little boy, playing with his floating poo in the tub! My stomach felt sick! Let's just say....corn and craisins from dinner last night made an appearance this morning! So, out with him, scooped the toys out and put them in the sink to be sterilized, drained the water so I could clean up the poo and scour the tub...again. Nasty!
While I was busy scrubbing and cleaning, my darling little one year old thought it a great place to go pee on the stool and then came over by the tub to watch me and did it again on the floor!!! Seriously kid!!! After cleaning the tub, I stuck both kids back in and started cleaning all the bath toys, bucket and sink. As I was doing so....my busy one year old was hard at work pulling Zach's loafa spongey-thing apart and throwing the pieces in the tub!
Bathtime was officially OVER!!! I got them washed and dried and clothed, and now this darling little one year old is walking around pulling every toy out that he can find. That is just fine with me little dude because at least now, you have a diaper on!!!
Really, this little boy is the super-est cutest thing ever! But he sure is busy and he sure is just a BOY!!! All BOY!!! But I wouldn't trade him for anything! He is my squishy, cuddly, handsome fella that I squish and kiss all day long!!! So, yes, I let myself laugh a bit today about our bathtime adventures. I am sure a while down the road I can really laugh....as long as this doesn't turn into a habit!!!
Sunday, April 25, 2010
Diagnosis Info
My fabulous sister, Joy...who is extremely smart and fabulous and wonderful and beautiful and awesome...asked me to tell her about Karleigh's diagnosises for a paper she is writing in school. So I have this recorded for later, I just copied and pasted what I wrote to her so it wouldn't get deleted or lost. I think there are some things missing, but my brain has shut down for the night! Anyway - you can read on if you want to learn more about Karleigh and the issues she had. _______________________________________________
Hey hotness, fancy-pants Joy –
OK – so since I have been cleaning since 6:30 AM and my body and mind are wasted…I will try to write down stuff you need. If I miss stuff or don’t explain it enough, let me know and I will tell you more. Sorry if I ramble – I probably will!!!
Main diagnosis – Mosaic 5q deletion. Her missing sections were between the 13th and 21st section on the Q side of the 5th chromosome. This main problem then caused many sub-diagnosis’s to which affected her greatly. I will just list them off and then try to expound on them a bit. Let me know if you want more info. Her diagnosis was the only one of its kind that her dr. could find. She searched the databases and could only find kids with the full 5q deletion. Hers being a mosaic meant it affected some cells and not all – which in turn made her better off than those with a full 5q deletion. Still much to deal with on her part, but we are grateful there wasn’t more! So basically, some of her cells were completely fine, others had the deletion. We did not find out this diagnosis until she was about 7-8 months old, though. We found it out through a skin biopsy taken during surgery for her g-tube at 6 months. They sent it off to be tested for all kinds of things and that is what they found. Blood test months prior showed no sign of anything wrong.
Cerebral Palsy (CP) – She had low muscle tone which made it hard for her to hold her head up, support herself in sitting and standing positions, make her muscles move right. But with that low muscle tone, she also had a lot of spasticity in her muscles which would be very apparent when she would arch. This also caused her to not be able to move her arms, legs and head where she wanted it. With this, she also had the ATNR reflex, which is normal in every newborn. For example, if she brought her left arm and hand up to her ear, then her head would turn to the right and the right arm would go out away from her body. Babies outgrow this by about 4-6 months or sooner, but she wasn’t able to. This caused her to never be able to bring both hands midline (in the center of her body or face) to hold onto toys or other things right in front of her. This frustrated her a lot because she very much wanted to hold onto her toys and to play. She would work so hard just to get her hands to pick something up or to even swat at it. She had to concentrate so hard to even be able to get her arms and hands to do what her mind was telling it to. The look of determination on her face while trying to get her body to move right was so inspiring, yet so hard to watch. We take so much for granted! She had a little wheelchair as well as some other special chairs for sitting in. We got her a stander to get her in the upright position and put weight on her legs about 4 months before she died. We had a special bath chair that would strap her in and not allow her to get her face in the water because of her aspiration problems, which I will talk about next. She had weekly visits with her Physical Therapist, Occupational Therapist and Speech Therapist along with all her dr. visits. She wore AFO’s (Plastic molds made to fit her foot and legs) to get her and leg muscles and tendons to hold her foot in a normal position since she wasn’t load bearing and to also help support her ankles when we did stand her up. She would wake up 10-15 + times a night for about the first 2 years. Many times it was due to her low muscle tone and she just wanted to be readjusted or turned to a different side or position. Other diagnosis terms they gave her in the beginning – torticollis, plagiocephaly, hypotonia (low muscle tone).
Feeding issues – From day one, Karleigh had feeding problems. She could never nurse good and I remember it almost tickled when she would nurse. She did not have a strong suck. She would scream and scream at every feeding, had awful reflux and cried all the time. Zach had had problems nursing, so I thought maybe it was just me not doing something right. At 11 weeks old, I quit nursing and bottle fed. She still had the same problems. Finally, around 12-13 weeks old, I took her into her pediatrician because she had screamed for 2 weeks straight almost day and night. I couldn’t figure out what to do anymore. She sent us for an upper GI scan and they found out she had reflux. This then started the whole process of figuring out what was wrong. They put her on meds (Zantac and Reglan) and thought that would solve all our problems. We then went to the Children’s Hospital in Denver and started figuring everything else out. Along with the reflux, she had pretty severe aspiration problems (food or vomit goes in lungs). She was very fortunate this never turned into pneumonia. Chest x-rays were routine in trying to figure out unexplained sicknesses – just double checking to see about pneumonia. Also, other big GI x-rays and scans and tests. She needed someone around her at all times to get her rolled over if she did start vomiting. Sometimes the gagging and retching wouldn’t allow her to take a breath for a long time. So, having her right there so you could blow a quick startling blow of air into her face would often help her take a breath. The gagging could get pretty violent and scary and she would be pretty wiped out after it.
Karleigh was born at 6 lbs. 14 oz. (everything saying she was fine and healthy) and at 6 ½ months old she weighed only 12 ½ lbs. At 6 months when they found out about the aspiration problems, a week later had her in for her first surgery to get a g-tube placed in her belly and also a Nissan fundoplication (stomach wrap to try to prevent the reflux – which in her case, it didn’t work and she would still reflux and then aspirate). The g-tube was wonderful, but the Nissan wasn’t. She had many complications with it (a lot of severe retching and gagging – mostly because it was wrapped to tight) and ended up about 8 months later having a second surgery to have it loosened and her stomach pulled back down into place. The wrenching and gagging had caused a hiatal hernia (the stomach goes above the diaphragm). She eventually had a gj-tube placed and that relieved so many problems. The gagging was still there, but not nearly as much, nor did she have much in her stomach to aspirate on when she did reflux. This feeding tube used the same original hole in her belly, but it was not just a stub into the stomach. We went in about every 3-4 months to the Interventional Radiologist and as she lay under the x-ray machine, he would insert a longer feeding tube through the stomach and into the first part of her intestines. This would make the food bypass the stomach so she couldn’t reflux and also make her much more comfortable. It did wonders for her! The only bad thing was that she would then be constantly hooked up to her feeding pump almost 24/7 because her special formula had to be pumped in very slowly over the entire day and night. (PS – her formula had to be a very broken down kind so it was easily digestible – it would cost us $1200/month if we didn’t have the awesome insurance we had back then!) Luckily, they gave us a handy backpack type thing that we could carry around with her and also hang it from her IV pole that hooked on her wheelchair.
At about 6-7 months, before we got the Mosaic 5q deletion, her neurologist had her do a cat-scan on her brain to determine her brain function and see the structure of her brain. He also did a EEG to look for seizures. She did end up having Complex Partial seizures. They were not easily detected because it caused her to stare into space for 15-30 seconds. After we knew what to look for, we could tell and then she would take about 10-15 minutes to come around fully. Then she would be back to her normal self. She was put on Phenobarbital for this and it worked great for her.
About this time we also took her to a Pediatric Ophthalmologist and he said that she was having a very hard time seeing. She got some little tiny glasses and then had check-ups on her eyes often as they would change as she grew. It was hard to believe the eye dr. that she couldn’t see well because she did not seem like she had much of a problem at all. She hated keeping her glasses on and would often swat at them with her hands to knock them off. Since they were hooked around the back of her ear, when she would swat them, it would often push them right into her mouth and she would not be able to get them out. Or the little nose pieces would go up her nose. So uncomfortable.
Karleigh had a hard time regulating her body temperature. When she was a newborn, we couldn’t keep her warm. She was always chilly! Then as she got older, she would get so hot and overheated with the amount of energy it took just to sit in her chair or to wiggle around or do her therapy. She also was diagnosed with RAD – Reactive Airway Disease. She had a hard time breathing in strong wind and also cold temperatures. In a sleep study she had, they found that she needed oxygen at night as well (which was pretty much IMPOSSIBLE to keep on her!). We had 2 big ugly oxygen tanks in her room at the bottom of her bed. Her breathing was very loud and rattle-y sounding – day and night. This was partly because of her CP, but also because she had big tonsils and adenoids. She went in for her 3rd surgery about 3 ½ months before she died to get her adenoids out and ear tubes put in (ear infections happened ALL the time!! ALL the time!). They would not take her tonsils out during that surgery because it was too risky. She would have had to go in later in the year probably to get them out. Her ENT was convinced that she would end up in the ICU if we took out both adenoids and tonsils at the same time because of her breathing problems as well as her other issues. No thank you!
Since there were no other known cases of someone having a Mosaic 5q deletion, everything was a guessing game for her dr’s. She was at a greater risk of developing colon cancer (a 5q deletion symptom) and at the age of 10 would be required to have yearly colonoscopies. Once characteristic that I remember her dr. pointing out was her fingers and how they tapered at the ends by her fingernail. That also is a 5q deletion symptom. She had quite chubby little hands, but they tapered at the ends – quite cute if I do say so myself!!!
Her hearing was fabulously fine!! She was super smart and we felt bad we didn’t know quite how smart she really was for a long time. It was hard to know since she couldn’t tell us in word or body movement. She was very aware of her surroundings and communicated mostly by talking (in her own way), crying or through her eyes. If you gave her a choice of what shoes to wear or what shirt she wanted that day, she would stare at the one she wanted. When you would confirm it, “Karleigh, do you want this one?”, she would get a big smile on her face and sometimes laugh or get really excited. She loved bright colors and being outdoors. She loved animals, especially our dog, Mickey. She LOVED soft music and would sit totally still if we were at a concert or during the sacrament songs at church. Then when the music was over, it was back to wiggling or playing….or crying. She loved for Zach to push her around fast in her wheelchair and loved to play peekaboo. She was often sick, but most people didn’t even know because she always smiled and tried to be happy when she wasn’t hurting. She loved to lay on the floor and have you put a blanket over her face and then pull it away really quickly. She would squirm so much with excitement while playing that that one time she almost flipped herself over onto her stomach….which was an amazing, amazing thing!! She couldn’t do that normally. She was a total teaser and totally knew what she was doing when she teased! She loved to be rocked to sleep. If she wasn’t asleep when it was bedtime, right when you would lay her down and turn on her musical frog, she would start to whimper and give you the biggest, saddest puppy dog eyes that you had ever seen. It was so hard to leave when she would do that, so she often got her way and I would stay and play or give hugs and kisses just a bit longer. She loved to snuggle and if you had her head on your shoulder, she would try to get her arms around you and squeeze as much as she could. She made many improvements in therapy the months before she passed and was doing so well health-wise. Sicknesses had slowed way down and her belly was not as temperamental at the end of her life. She started advancing a lot and it was so exciting! We saw a glimpse of what it will be like for her someday!
Ok Joy - well – I have a feeling that I am missing something, but can’t really think anymore tonight. Let me know if you can think of anything else, and I will think some more of what I am missing. Good luck on your report!! I am sure you will do fabulous! Don’tcha remember….yer the smartest and hottest sister of us all...and the nicest!!! Let me know how it goes and send me a copy!
Love you lots!!!
Tracy
___________________________________________________
Here are some pictures of some of Karleigh's equiptment... Taken last year when we decided we could finally part with them. I know - took us a while, but now they are being used plenty by other special little kids!
Hey hotness, fancy-pants Joy –
OK – so since I have been cleaning since 6:30 AM and my body and mind are wasted…I will try to write down stuff you need. If I miss stuff or don’t explain it enough, let me know and I will tell you more. Sorry if I ramble – I probably will!!!
Main diagnosis – Mosaic 5q deletion. Her missing sections were between the 13th and 21st section on the Q side of the 5th chromosome. This main problem then caused many sub-diagnosis’s to which affected her greatly. I will just list them off and then try to expound on them a bit. Let me know if you want more info. Her diagnosis was the only one of its kind that her dr. could find. She searched the databases and could only find kids with the full 5q deletion. Hers being a mosaic meant it affected some cells and not all – which in turn made her better off than those with a full 5q deletion. Still much to deal with on her part, but we are grateful there wasn’t more! So basically, some of her cells were completely fine, others had the deletion. We did not find out this diagnosis until she was about 7-8 months old, though. We found it out through a skin biopsy taken during surgery for her g-tube at 6 months. They sent it off to be tested for all kinds of things and that is what they found. Blood test months prior showed no sign of anything wrong.
Cerebral Palsy (CP) – She had low muscle tone which made it hard for her to hold her head up, support herself in sitting and standing positions, make her muscles move right. But with that low muscle tone, she also had a lot of spasticity in her muscles which would be very apparent when she would arch. This also caused her to not be able to move her arms, legs and head where she wanted it. With this, she also had the ATNR reflex, which is normal in every newborn. For example, if she brought her left arm and hand up to her ear, then her head would turn to the right and the right arm would go out away from her body. Babies outgrow this by about 4-6 months or sooner, but she wasn’t able to. This caused her to never be able to bring both hands midline (in the center of her body or face) to hold onto toys or other things right in front of her. This frustrated her a lot because she very much wanted to hold onto her toys and to play. She would work so hard just to get her hands to pick something up or to even swat at it. She had to concentrate so hard to even be able to get her arms and hands to do what her mind was telling it to. The look of determination on her face while trying to get her body to move right was so inspiring, yet so hard to watch. We take so much for granted! She had a little wheelchair as well as some other special chairs for sitting in. We got her a stander to get her in the upright position and put weight on her legs about 4 months before she died. We had a special bath chair that would strap her in and not allow her to get her face in the water because of her aspiration problems, which I will talk about next. She had weekly visits with her Physical Therapist, Occupational Therapist and Speech Therapist along with all her dr. visits. She wore AFO’s (Plastic molds made to fit her foot and legs) to get her and leg muscles and tendons to hold her foot in a normal position since she wasn’t load bearing and to also help support her ankles when we did stand her up. She would wake up 10-15 + times a night for about the first 2 years. Many times it was due to her low muscle tone and she just wanted to be readjusted or turned to a different side or position. Other diagnosis terms they gave her in the beginning – torticollis, plagiocephaly, hypotonia (low muscle tone).
Feeding issues – From day one, Karleigh had feeding problems. She could never nurse good and I remember it almost tickled when she would nurse. She did not have a strong suck. She would scream and scream at every feeding, had awful reflux and cried all the time. Zach had had problems nursing, so I thought maybe it was just me not doing something right. At 11 weeks old, I quit nursing and bottle fed. She still had the same problems. Finally, around 12-13 weeks old, I took her into her pediatrician because she had screamed for 2 weeks straight almost day and night. I couldn’t figure out what to do anymore. She sent us for an upper GI scan and they found out she had reflux. This then started the whole process of figuring out what was wrong. They put her on meds (Zantac and Reglan) and thought that would solve all our problems. We then went to the Children’s Hospital in Denver and started figuring everything else out. Along with the reflux, she had pretty severe aspiration problems (food or vomit goes in lungs). She was very fortunate this never turned into pneumonia. Chest x-rays were routine in trying to figure out unexplained sicknesses – just double checking to see about pneumonia. Also, other big GI x-rays and scans and tests. She needed someone around her at all times to get her rolled over if she did start vomiting. Sometimes the gagging and retching wouldn’t allow her to take a breath for a long time. So, having her right there so you could blow a quick startling blow of air into her face would often help her take a breath. The gagging could get pretty violent and scary and she would be pretty wiped out after it.
Karleigh was born at 6 lbs. 14 oz. (everything saying she was fine and healthy) and at 6 ½ months old she weighed only 12 ½ lbs. At 6 months when they found out about the aspiration problems, a week later had her in for her first surgery to get a g-tube placed in her belly and also a Nissan fundoplication (stomach wrap to try to prevent the reflux – which in her case, it didn’t work and she would still reflux and then aspirate). The g-tube was wonderful, but the Nissan wasn’t. She had many complications with it (a lot of severe retching and gagging – mostly because it was wrapped to tight) and ended up about 8 months later having a second surgery to have it loosened and her stomach pulled back down into place. The wrenching and gagging had caused a hiatal hernia (the stomach goes above the diaphragm). She eventually had a gj-tube placed and that relieved so many problems. The gagging was still there, but not nearly as much, nor did she have much in her stomach to aspirate on when she did reflux. This feeding tube used the same original hole in her belly, but it was not just a stub into the stomach. We went in about every 3-4 months to the Interventional Radiologist and as she lay under the x-ray machine, he would insert a longer feeding tube through the stomach and into the first part of her intestines. This would make the food bypass the stomach so she couldn’t reflux and also make her much more comfortable. It did wonders for her! The only bad thing was that she would then be constantly hooked up to her feeding pump almost 24/7 because her special formula had to be pumped in very slowly over the entire day and night. (PS – her formula had to be a very broken down kind so it was easily digestible – it would cost us $1200/month if we didn’t have the awesome insurance we had back then!) Luckily, they gave us a handy backpack type thing that we could carry around with her and also hang it from her IV pole that hooked on her wheelchair.
At about 6-7 months, before we got the Mosaic 5q deletion, her neurologist had her do a cat-scan on her brain to determine her brain function and see the structure of her brain. He also did a EEG to look for seizures. She did end up having Complex Partial seizures. They were not easily detected because it caused her to stare into space for 15-30 seconds. After we knew what to look for, we could tell and then she would take about 10-15 minutes to come around fully. Then she would be back to her normal self. She was put on Phenobarbital for this and it worked great for her.
About this time we also took her to a Pediatric Ophthalmologist and he said that she was having a very hard time seeing. She got some little tiny glasses and then had check-ups on her eyes often as they would change as she grew. It was hard to believe the eye dr. that she couldn’t see well because she did not seem like she had much of a problem at all. She hated keeping her glasses on and would often swat at them with her hands to knock them off. Since they were hooked around the back of her ear, when she would swat them, it would often push them right into her mouth and she would not be able to get them out. Or the little nose pieces would go up her nose. So uncomfortable.
Karleigh had a hard time regulating her body temperature. When she was a newborn, we couldn’t keep her warm. She was always chilly! Then as she got older, she would get so hot and overheated with the amount of energy it took just to sit in her chair or to wiggle around or do her therapy. She also was diagnosed with RAD – Reactive Airway Disease. She had a hard time breathing in strong wind and also cold temperatures. In a sleep study she had, they found that she needed oxygen at night as well (which was pretty much IMPOSSIBLE to keep on her!). We had 2 big ugly oxygen tanks in her room at the bottom of her bed. Her breathing was very loud and rattle-y sounding – day and night. This was partly because of her CP, but also because she had big tonsils and adenoids. She went in for her 3rd surgery about 3 ½ months before she died to get her adenoids out and ear tubes put in (ear infections happened ALL the time!! ALL the time!). They would not take her tonsils out during that surgery because it was too risky. She would have had to go in later in the year probably to get them out. Her ENT was convinced that she would end up in the ICU if we took out both adenoids and tonsils at the same time because of her breathing problems as well as her other issues. No thank you!
Since there were no other known cases of someone having a Mosaic 5q deletion, everything was a guessing game for her dr’s. She was at a greater risk of developing colon cancer (a 5q deletion symptom) and at the age of 10 would be required to have yearly colonoscopies. Once characteristic that I remember her dr. pointing out was her fingers and how they tapered at the ends by her fingernail. That also is a 5q deletion symptom. She had quite chubby little hands, but they tapered at the ends – quite cute if I do say so myself!!!
Her hearing was fabulously fine!! She was super smart and we felt bad we didn’t know quite how smart she really was for a long time. It was hard to know since she couldn’t tell us in word or body movement. She was very aware of her surroundings and communicated mostly by talking (in her own way), crying or through her eyes. If you gave her a choice of what shoes to wear or what shirt she wanted that day, she would stare at the one she wanted. When you would confirm it, “Karleigh, do you want this one?”, she would get a big smile on her face and sometimes laugh or get really excited. She loved bright colors and being outdoors. She loved animals, especially our dog, Mickey. She LOVED soft music and would sit totally still if we were at a concert or during the sacrament songs at church. Then when the music was over, it was back to wiggling or playing….or crying. She loved for Zach to push her around fast in her wheelchair and loved to play peekaboo. She was often sick, but most people didn’t even know because she always smiled and tried to be happy when she wasn’t hurting. She loved to lay on the floor and have you put a blanket over her face and then pull it away really quickly. She would squirm so much with excitement while playing that that one time she almost flipped herself over onto her stomach….which was an amazing, amazing thing!! She couldn’t do that normally. She was a total teaser and totally knew what she was doing when she teased! She loved to be rocked to sleep. If she wasn’t asleep when it was bedtime, right when you would lay her down and turn on her musical frog, she would start to whimper and give you the biggest, saddest puppy dog eyes that you had ever seen. It was so hard to leave when she would do that, so she often got her way and I would stay and play or give hugs and kisses just a bit longer. She loved to snuggle and if you had her head on your shoulder, she would try to get her arms around you and squeeze as much as she could. She made many improvements in therapy the months before she passed and was doing so well health-wise. Sicknesses had slowed way down and her belly was not as temperamental at the end of her life. She started advancing a lot and it was so exciting! We saw a glimpse of what it will be like for her someday!
Ok Joy - well – I have a feeling that I am missing something, but can’t really think anymore tonight. Let me know if you can think of anything else, and I will think some more of what I am missing. Good luck on your report!! I am sure you will do fabulous! Don’tcha remember….yer the smartest and hottest sister of us all...and the nicest!!! Let me know how it goes and send me a copy!
Love you lots!!!
Tracy
___________________________________________________
Here are some pictures of some of Karleigh's equiptment... Taken last year when we decided we could finally part with them. I know - took us a while, but now they are being used plenty by other special little kids!
This wheelchair was such a part of her that it was honestly the hardest piece of her equiptment to let go. We have heard that it is being used now and we are thrilled that Karleigh is still helping others.
Thursday, April 15, 2010
Smeared mascara....
In thinking about posting about today, I almost decided not to. But as I looked back at last years post, I realized how important it is for me to write down the day and the feelings and the things we did. Why didn't I want to write about today? Well, as you have probably already noticed, I haven't been in the blogging mood lately. Quite honestly, life is just hard sometimes and sometimes I feel like I just need to take things a day at a time. So that is what I have been doing.
I guess I thought last year that since I finally came to terms with Karleigh's death (meaning the awfulness of that day), that every other year would be a walk in the park compared to the first few years. Let's just say, I was naive. While this anniversary isn't nearly as painful as the others, it still hurts. 5 years! That is a long time. I miss her. I miss her more than I can express on this blog. This isn't and easy road I have been asked to travel. It hurts. These anniversaries are just plain hard. So there. I said it. 5 years out and my heart still longs for my baby girl. It always will because she is MY sweet, precious, and perfect little Karleigh.
So the activities for remembering this sacred day in our family actually started on Saturday. It is a new tradition I started this year all thanks to the suggestion from my fabulous friend, Mary Jane, whom I love and adore and who also walks this difficult road. Since I miss my Karleigh girl so much, what a great thing would that be for me to be with my other girl - my Chloe girl! I love that idea! Chloe makes me happy! How can you not be happy around her?!! She is a ball of sunshine wrapped into a tiny package! Chloe and I went with some friends and their daughters to the Hale Theatre to see Princess and the Pea. While she didn't quite understand it, she still had a great time. Her favorite part was intermission where she got to go down to the stage with all the other little girls and dance around like princesses. She stayed down there the whole time and didn't want to come back to her seat. Afterwards, I told her we could go get some lunch, but all she wanted was "a big glass of milk!" So we headed to McDonalds to get her a big glass of milk, because coming home and getting some milk was out of the question! =) This is a tradition I hope I can do every year with my girl! Just she and I - spending time together.
Today started out just like any other day. Chris left for work (although he was only going to work a half day - yeah!). I got Zach and Chloe off to school and came home to get ready to go to the store, do household stuff, play with my squishy and adorable baby and talk on the phone with my mom and sister. When Chris got home after picking up Chloe from school, we headed to the store to pick out flowers, pots and balloons. It was so nice having Chris come with me this time to pick out the perfect flowers.
We decided this year that we wanted to keep it small, but meaningful. We potted a couple pots of flowers and delivered them to two wonderful families who "know." After dinner we all wrote a note to Karleigh on a balloon and then went out in the backyard to send them up to heaven. The kids were so excited to send the balloons to her! They love this tradition (of which I forgot until I read last years post!). I am so grateful for my wonderful children!! Their happiness is so contagious!
I got the kids bathed and into bed and then went downstairs to do dishes. I turned on some quiet, calming piano music and got to work on the dishes. (cleaning seems to be one of the best ways for me to ponder things) I felt like the day had been good, but still so busy that I didn't have much time to ponder. I needed to ponder about my girl. I felt like I didn't want this day to end because then we have to really start heading down the road to year number 6. I also decided that I needed to come post about the day for my own memory. I don't have the best memory, ya know (as my sisters and hubby will attest!)
There is one thing I know for sure today....Karleigh was near all day. I felt her. I still feel her as I type this. Not long after I came up to type this, Chris came up to head to bed. He came over to chat for a bit and let me know my mascara was smeared. =) I shared some of the feelings that I was having and he shared some of his. He reminded me of a prayer he said before Karleigh died that helps him remember why things will be ok. I had forgotten today. I had forgotten the prayer I said the night before she died - of which is too personal and sacred for me to type on this blog. I am grateful that Chris kindly reminded me of his own memory, because it brought back an important reason that I can cope with her death.
Saturday we plan on having our family day. We are going somewhere to take a hike and get outdoors and just be together. There is something about being outdoors that can just heal my soul. And if I am there with my family - all the better.
I am grateful for a gracious Father in Heaven that calms my troubled heart time and time again. I am grateful that He blesses me with opportunities to feel Karleigh near. I know He loves me and is aware of even my smallest needs. He has blessed me with the knowledge of my Savior and His wonderful Atonement and the Plan of Salvation that can make all this heartache bearable. I am indebted to Him for His unconditional love for me despite all of my many imperfections. I am grateful that He has never left me, even when I was less than deserving of His love. He hears me. That, I know without a shadow of a doubt!
I love you, Karleigh. Please never ever forget that!
Here are the pictures from the day.
I guess I thought last year that since I finally came to terms with Karleigh's death (meaning the awfulness of that day), that every other year would be a walk in the park compared to the first few years. Let's just say, I was naive. While this anniversary isn't nearly as painful as the others, it still hurts. 5 years! That is a long time. I miss her. I miss her more than I can express on this blog. This isn't and easy road I have been asked to travel. It hurts. These anniversaries are just plain hard. So there. I said it. 5 years out and my heart still longs for my baby girl. It always will because she is MY sweet, precious, and perfect little Karleigh.
So the activities for remembering this sacred day in our family actually started on Saturday. It is a new tradition I started this year all thanks to the suggestion from my fabulous friend, Mary Jane, whom I love and adore and who also walks this difficult road. Since I miss my Karleigh girl so much, what a great thing would that be for me to be with my other girl - my Chloe girl! I love that idea! Chloe makes me happy! How can you not be happy around her?!! She is a ball of sunshine wrapped into a tiny package! Chloe and I went with some friends and their daughters to the Hale Theatre to see Princess and the Pea. While she didn't quite understand it, she still had a great time. Her favorite part was intermission where she got to go down to the stage with all the other little girls and dance around like princesses. She stayed down there the whole time and didn't want to come back to her seat. Afterwards, I told her we could go get some lunch, but all she wanted was "a big glass of milk!" So we headed to McDonalds to get her a big glass of milk, because coming home and getting some milk was out of the question! =) This is a tradition I hope I can do every year with my girl! Just she and I - spending time together.
Today started out just like any other day. Chris left for work (although he was only going to work a half day - yeah!). I got Zach and Chloe off to school and came home to get ready to go to the store, do household stuff, play with my squishy and adorable baby and talk on the phone with my mom and sister. When Chris got home after picking up Chloe from school, we headed to the store to pick out flowers, pots and balloons. It was so nice having Chris come with me this time to pick out the perfect flowers.
We decided this year that we wanted to keep it small, but meaningful. We potted a couple pots of flowers and delivered them to two wonderful families who "know." After dinner we all wrote a note to Karleigh on a balloon and then went out in the backyard to send them up to heaven. The kids were so excited to send the balloons to her! They love this tradition (of which I forgot until I read last years post!). I am so grateful for my wonderful children!! Their happiness is so contagious!
I got the kids bathed and into bed and then went downstairs to do dishes. I turned on some quiet, calming piano music and got to work on the dishes. (cleaning seems to be one of the best ways for me to ponder things) I felt like the day had been good, but still so busy that I didn't have much time to ponder. I needed to ponder about my girl. I felt like I didn't want this day to end because then we have to really start heading down the road to year number 6. I also decided that I needed to come post about the day for my own memory. I don't have the best memory, ya know (as my sisters and hubby will attest!)
There is one thing I know for sure today....Karleigh was near all day. I felt her. I still feel her as I type this. Not long after I came up to type this, Chris came up to head to bed. He came over to chat for a bit and let me know my mascara was smeared. =) I shared some of the feelings that I was having and he shared some of his. He reminded me of a prayer he said before Karleigh died that helps him remember why things will be ok. I had forgotten today. I had forgotten the prayer I said the night before she died - of which is too personal and sacred for me to type on this blog. I am grateful that Chris kindly reminded me of his own memory, because it brought back an important reason that I can cope with her death.
Saturday we plan on having our family day. We are going somewhere to take a hike and get outdoors and just be together. There is something about being outdoors that can just heal my soul. And if I am there with my family - all the better.
I am grateful for a gracious Father in Heaven that calms my troubled heart time and time again. I am grateful that He blesses me with opportunities to feel Karleigh near. I know He loves me and is aware of even my smallest needs. He has blessed me with the knowledge of my Savior and His wonderful Atonement and the Plan of Salvation that can make all this heartache bearable. I am indebted to Him for His unconditional love for me despite all of my many imperfections. I am grateful that He has never left me, even when I was less than deserving of His love. He hears me. That, I know without a shadow of a doubt!
I love you, Karleigh. Please never ever forget that!
Here are the pictures from the day.
Wednesday, March 24, 2010
BOO - We aren't coming....
Sorry to say that we can't make it up to Indiana! Oh, I so want to!!! But there is no way I can feel comfortable about possibly passing along what we have been hacking for the the last few days! It has been miserable to say the least!!! MISERABLE!!! Chris is actually flying in tonight to help drive us home. I think I would have been just fine if I hadn't gotten so sick. I am still not feeling better, but definetely much better than a couple days ago.
Anyway - I am sorry that we can't come! I will try to make a trip out there soon. I love you all!!!
Anyway - I am sorry that we can't come! I will try to make a trip out there soon. I love you all!!!
Saturday, March 20, 2010
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!!
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!!
Saturday, March 6, 2010
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!!!
Wednesday, March 3, 2010
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Saturday, February 27, 2010
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.
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.
Friday, February 26, 2010
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!
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!
Wednesday, February 24, 2010
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.)
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.
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