Monday, October 10, 2011
HOLY MOLY! October?
Wednesday, August 31, 2011
Life as we know it...
Been the usual crazy around here lately. School starts tomorrow, though having kids ages 1, 2 and 3...none of them are in school yet. Troy will go to St Rose's Little Lambs program. That starts at the end of the month. He's excited! We got him a Buzz Lightyear backpack and a bunch of school supplies.
Last weekend, all 3 of the kids had an overnight with Grandpa Harley and Grandma Deb. Kristopher and I went to a wedding reception in Prairie and before we left town, we stopped at Culver's to share a banana split for old times sake! We both slept like rocks that night. I don't think I moved for 9 straight hours! The kids had an amazing time too!
A couple weekends ago was a busy one for us. We had my niece Lily's birthday party on Friday night. On Saturday, I packed the kids up and took them to Lancaster for a family reunion for Kris's mom's family. Then I took them to the Grant County fair to see the farm animals and all the cool stuff. Troy desperately wanted to ride the rides but since I was the only adult with 3 kids, I told him they were scary and maybe next year he could ride them and then got him a sno-cone. Then Sunday, as a family, we went to Cassville and took my in-laws boat out on the river. That was fun! Definitely going to do that again! Next time, we're bringing a cooler full of snacks, sandwiches and drinks and a pail and shovel and stopping at a sandbar.
Weston had a bought of the flu. We think he may have had hand foot and mouth again. He would chew his food but spit it out, crying. So we assume that his throat hurt. Unfortunately, hand and foot is virus that just has to run its coarse. He's doing better now.
Tonight, I took the kids grocery shopping with me. Oh lord, that is an adventure in itself. But what made it worse was that as I was hooking the kids into their carseats at the babysitter, I noticed Troy's shorts were wet and he smelled very strongly of urine. He told me straight out that he had wet his pants and he was sorry so I told him no rides at the grocery store and he had sit in the cart the entire time. He fussed about it a little but that was it. I got the kids a popcorn chicken cup to eat as we were going through the store because we would get home when we usually sat down to eat. This would at least tie them over until I had something made. I think Troy ate 80% of the chicken. I filled cups before we headed home. Troy had 2 melt downs in the parking lot over his head hurting and was hysterically crying over something that I still not sure what it was. About halfway home, he started crying in the backseat clutching his belly and started dry heaving. I pulled over and calmed him down. By the time we got home, he was asleep. It's 6:30 at this point. I opened the house and hopped in the car to get the kids out so they could start trickling inside while I carried in groceries. Troy's lips were completely white. I took him out and we went inside because he was really shaky. He started crying about just wanting to go to his bed so I put him in bed, grabbed a bucket and told him to use that if he was going to throw up. I went out to get the other kids and when I got back inside, he was in his room sobbing. He threw up on his pillow, in the bucket, on his arm and on his bed. He told me, he ate too much chicken. It's now 2 hours later, he's been asleep for well over an hour (in Rylee's bed because his torn apart and in the washer!) It's hot in the house and he's got the blankets pulled up to his chin. Poor kid!
Rylee has been doing pretty good. She lost a bunch of weight and now has gained it back. The GI doc referred us to a food psychologist. I don't know what we will get out of it, probably nothing, since Rylee can't tell us why she is a picky eater at times. I am completely convinced that this is a behavior thing. All kids at 2 or 3 go through this. Rylee is no different in that part but she is in the aspect that she doesn't have any extra baby fat just laying around like other kids. She's doing well though. Quite the jibber jabber. And she loves to sing. I hope she as musically inclined as her dad!
Speaking of Dad, it's his birthday tomorrow. He's going to be 26. Happy Birthday daddy!
My migraines are back! I have been having more stress lately. I trying to work through it. My major stress is my mom. I can control this and turn it into something positive rather than having my brain beat out through my toenails! I have come a long way in the last month with my feelings towards my mom. She's never been the best mom, never mother of the year or anything. She's had moments where I can say that I am glad that she was there with me. Then there are moments, when she is completely out of sync with the real world. Weston's 1st birthday party was planned, invites were sent out 2 weeks ahead of time. Sawyer's 1st birthday party was the weekend before Weston's and mom made the 3 hour trek up to it. She made the 45 minute trek 3 weeks later down to Lily's 1st birthday party, which is 10 minutes from where we live. 2 hours before Weston's party, mom called me to tell me that they "won't be able to make. They have people to meet." 2 hours before the party, when I am running around like crazy putting everything together to take up to the park shelter and she dropped this on me. I just hung up on her. That or I would have said something childish and mean and would've regretted it later. OK, fine she didn't come. His actual birthday comes a few days later, she doesn't even call to acknowledge it. A week after his actual birthday, she stomps into my job, throws a gift on my desk and stomps out. She never said a cotton pickin' word to me. Fine, whatever, be a child, I'll be the adult! What really got to me, was when I pulled into Craig and Jen's driveway a week and half later, and she was there. She went to Lily's 1st birthday party, which she should've, she's her grandma. They even let off fireworks. Not once, did she acknowledge me or my kids until Rylee walked up to her. I did take Rylee away from her because she was drinking and on a counter height chair and I didn't want anything to happen to her $1,000,000 head! It's not fair to come to 2 of the birthdays and leave 1 out. It breaks my heart to think that his own grandma didn't come to his first birthday. I am so glad that he is 1 and didn't even realize she wasn't there. I will never ever let her hurt one of my kids, ever! She has let me down more in my life than been there for me. I think the birthday party thing was the last straw of many. The last chance of many. Troy, Rylee and Weston have 2 set of grandparents that love them dearly, that they love fiercely. Unfortunately, my mom is no longer welcome to share these joyful times and those not so joyful times. I have made that decision. It's completely her loss. I have 3 amazing kids, that I will raise with as much positivity and goodness as I can. I am so grateful that I have 2 awesomely wonderful sisters and an amazing mother-in-law and step-mom that I look up to, that I look to for guidance. I hope she lives a great life. I hope one day she'll straighten up, get rid of the booze and whatever else and seek a relationship with me and my family!
Last weekend, all 3 of the kids had an overnight with Grandpa Harley and Grandma Deb. Kristopher and I went to a wedding reception in Prairie and before we left town, we stopped at Culver's to share a banana split for old times sake! We both slept like rocks that night. I don't think I moved for 9 straight hours! The kids had an amazing time too!
A couple weekends ago was a busy one for us. We had my niece Lily's birthday party on Friday night. On Saturday, I packed the kids up and took them to Lancaster for a family reunion for Kris's mom's family. Then I took them to the Grant County fair to see the farm animals and all the cool stuff. Troy desperately wanted to ride the rides but since I was the only adult with 3 kids, I told him they were scary and maybe next year he could ride them and then got him a sno-cone. Then Sunday, as a family, we went to Cassville and took my in-laws boat out on the river. That was fun! Definitely going to do that again! Next time, we're bringing a cooler full of snacks, sandwiches and drinks and a pail and shovel and stopping at a sandbar.
Weston had a bought of the flu. We think he may have had hand foot and mouth again. He would chew his food but spit it out, crying. So we assume that his throat hurt. Unfortunately, hand and foot is virus that just has to run its coarse. He's doing better now.
Tonight, I took the kids grocery shopping with me. Oh lord, that is an adventure in itself. But what made it worse was that as I was hooking the kids into their carseats at the babysitter, I noticed Troy's shorts were wet and he smelled very strongly of urine. He told me straight out that he had wet his pants and he was sorry so I told him no rides at the grocery store and he had sit in the cart the entire time. He fussed about it a little but that was it. I got the kids a popcorn chicken cup to eat as we were going through the store because we would get home when we usually sat down to eat. This would at least tie them over until I had something made. I think Troy ate 80% of the chicken. I filled cups before we headed home. Troy had 2 melt downs in the parking lot over his head hurting and was hysterically crying over something that I still not sure what it was. About halfway home, he started crying in the backseat clutching his belly and started dry heaving. I pulled over and calmed him down. By the time we got home, he was asleep. It's 6:30 at this point. I opened the house and hopped in the car to get the kids out so they could start trickling inside while I carried in groceries. Troy's lips were completely white. I took him out and we went inside because he was really shaky. He started crying about just wanting to go to his bed so I put him in bed, grabbed a bucket and told him to use that if he was going to throw up. I went out to get the other kids and when I got back inside, he was in his room sobbing. He threw up on his pillow, in the bucket, on his arm and on his bed. He told me, he ate too much chicken. It's now 2 hours later, he's been asleep for well over an hour (in Rylee's bed because his torn apart and in the washer!) It's hot in the house and he's got the blankets pulled up to his chin. Poor kid!
Rylee has been doing pretty good. She lost a bunch of weight and now has gained it back. The GI doc referred us to a food psychologist. I don't know what we will get out of it, probably nothing, since Rylee can't tell us why she is a picky eater at times. I am completely convinced that this is a behavior thing. All kids at 2 or 3 go through this. Rylee is no different in that part but she is in the aspect that she doesn't have any extra baby fat just laying around like other kids. She's doing well though. Quite the jibber jabber. And she loves to sing. I hope she as musically inclined as her dad!
Speaking of Dad, it's his birthday tomorrow. He's going to be 26. Happy Birthday daddy!
My migraines are back! I have been having more stress lately. I trying to work through it. My major stress is my mom. I can control this and turn it into something positive rather than having my brain beat out through my toenails! I have come a long way in the last month with my feelings towards my mom. She's never been the best mom, never mother of the year or anything. She's had moments where I can say that I am glad that she was there with me. Then there are moments, when she is completely out of sync with the real world. Weston's 1st birthday party was planned, invites were sent out 2 weeks ahead of time. Sawyer's 1st birthday party was the weekend before Weston's and mom made the 3 hour trek up to it. She made the 45 minute trek 3 weeks later down to Lily's 1st birthday party, which is 10 minutes from where we live. 2 hours before Weston's party, mom called me to tell me that they "won't be able to make. They have people to meet." 2 hours before the party, when I am running around like crazy putting everything together to take up to the park shelter and she dropped this on me. I just hung up on her. That or I would have said something childish and mean and would've regretted it later. OK, fine she didn't come. His actual birthday comes a few days later, she doesn't even call to acknowledge it. A week after his actual birthday, she stomps into my job, throws a gift on my desk and stomps out. She never said a cotton pickin' word to me. Fine, whatever, be a child, I'll be the adult! What really got to me, was when I pulled into Craig and Jen's driveway a week and half later, and she was there. She went to Lily's 1st birthday party, which she should've, she's her grandma. They even let off fireworks. Not once, did she acknowledge me or my kids until Rylee walked up to her. I did take Rylee away from her because she was drinking and on a counter height chair and I didn't want anything to happen to her $1,000,000 head! It's not fair to come to 2 of the birthdays and leave 1 out. It breaks my heart to think that his own grandma didn't come to his first birthday. I am so glad that he is 1 and didn't even realize she wasn't there. I will never ever let her hurt one of my kids, ever! She has let me down more in my life than been there for me. I think the birthday party thing was the last straw of many. The last chance of many. Troy, Rylee and Weston have 2 set of grandparents that love them dearly, that they love fiercely. Unfortunately, my mom is no longer welcome to share these joyful times and those not so joyful times. I have made that decision. It's completely her loss. I have 3 amazing kids, that I will raise with as much positivity and goodness as I can. I am so grateful that I have 2 awesomely wonderful sisters and an amazing mother-in-law and step-mom that I look up to, that I look to for guidance. I hope she lives a great life. I hope one day she'll straighten up, get rid of the booze and whatever else and seek a relationship with me and my family!
Sunday, August 14, 2011
Pictures!
Daddy found the lost camera cord. It was, of all places, in the diaper bag. I guess it helps to clean that bugger out sometimes!
We had the meeting with Rylee's therapists on the 5th. It went awesome! Couldn't have asked for a better meeting. Currently, OT and PT each come once a month and Speech comes twice a month. NOW, OT will visit once in November and once in January to do her final evaluation. PT will come once in September, once in November and once in January to also do her final evaluation. Speech will continue to come twice a month until the end of January. January is when Rylee will turn 3 and is no longer eligible for the program. It's bittersweet really. We are going to definitely miss these ladies. They have played a huge huge role in our lives for the last 2 years. They are a big reason Rylee is doing so well now. Rylee is doing great!
Her new goals are:
PT: *Kick a ball *Catch a ball * Jump using both legs
OT *Do a 12 piece small knob puzzle *Draw 1 complete circle *Properly use scissors
Speech: *Identify objects by name *Use 2 words phrases *Able to answer WH questions
These are attainable goals. They are definitely things that we can incorporate into our everyday lives. After January 29, 12 Rylee will start going to school to receive her Speech therapy. As of right now, that looks to be it for future therapy. She will of course need to keep building her strength physically but we have big hopes in taking her to gymnastics to help with that. We also found out that she will most definitely be placed in school with her peers. That to me is huge! I never in my wildest dreams imagined that she would be with kids her same age. As long as she is prospering and evolving, that is where our goal to keep her would be but we don't have a problem holding her back to Weston's class if she needs it.
Rylee has also taken an adversion to solid foods. This is probably just a behavioral things. A normal 2 year thing but Rylee isn't the normal 2 year old. She doesn't have the normal 2 year old reserve of baby fat. SO, we're really not sure what to do now. She isn't eating and when she does, it's not much. I am just sick over it. She is literally withering right away from us. Her main focus is on her milk or liquids and that is quite a pity since there is no caloric intake in those. I guess maybe someone will call me tomorrow as a follow up from Friday? I am really not sure. FYI, She was 18 lbs on Friday, down 1 lb, 6 oz from July 18th.
Weston's actual birthday was rather uneventful. We had cake and sang him happy birthday. When daddy got home from work, he put the new 2 foot tall car toy thingy together and I'm pretty sure all 3 kids were glued to it the entire following day.
This weekend, me and the kids hung around home on Saturday while Kristopher worked. Once Daddy got home, Weston and I climbed in the van and headed to the New Glarus area for 1st birthday party #3 (we have 1 more this week and 1 next month). I had a great time visiting with my friends, Annie, Carolyn, Dana and Aaron while Weston played with his buddies, Jackson and Isaac C. He was exhaustedly asleep before we got out of the driveway to head home.
Today has been a "TLC the house" day. Daddy worked on cleaning the garage while I worked on laundry, dishes, cooking and getting ready for the start of another week. This kids were in and out all day, dragging in the flies with them.
I think now I am going to curl up with my husband, who I haven't seen to much of lately, and watch The Glee Project.
Hope you enjoyed the pictures!
Toodaloo ya'll!
We had the meeting with Rylee's therapists on the 5th. It went awesome! Couldn't have asked for a better meeting. Currently, OT and PT each come once a month and Speech comes twice a month. NOW, OT will visit once in November and once in January to do her final evaluation. PT will come once in September, once in November and once in January to also do her final evaluation. Speech will continue to come twice a month until the end of January. January is when Rylee will turn 3 and is no longer eligible for the program. It's bittersweet really. We are going to definitely miss these ladies. They have played a huge huge role in our lives for the last 2 years. They are a big reason Rylee is doing so well now. Rylee is doing great!
PT: *Kick a ball *Catch a ball * Jump using both legs
OT *Do a 12 piece small knob puzzle *Draw 1 complete circle *Properly use scissors
Speech: *Identify objects by name *Use 2 words phrases *Able to answer WH questions
These are attainable goals. They are definitely things that we can incorporate into our everyday lives. After January 29, 12 Rylee will start going to school to receive her Speech therapy. As of right now, that looks to be it for future therapy. She will of course need to keep building her strength physically but we have big hopes in taking her to gymnastics to help with that. We also found out that she will most definitely be placed in school with her peers. That to me is huge! I never in my wildest dreams imagined that she would be with kids her same age. As long as she is prospering and evolving, that is where our goal to keep her would be but we don't have a problem holding her back to Weston's class if she needs it.
Rylee has also taken an adversion to solid foods. This is probably just a behavioral things. A normal 2 year thing but Rylee isn't the normal 2 year old. She doesn't have the normal 2 year old reserve of baby fat. SO, we're really not sure what to do now. She isn't eating and when she does, it's not much. I am just sick over it. She is literally withering right away from us. Her main focus is on her milk or liquids and that is quite a pity since there is no caloric intake in those. I guess maybe someone will call me tomorrow as a follow up from Friday? I am really not sure. FYI, She was 18 lbs on Friday, down 1 lb, 6 oz from July 18th.
Weston's actual birthday was rather uneventful. We had cake and sang him happy birthday. When daddy got home from work, he put the new 2 foot tall car toy thingy together and I'm pretty sure all 3 kids were glued to it the entire following day.
This weekend, me and the kids hung around home on Saturday while Kristopher worked. Once Daddy got home, Weston and I climbed in the van and headed to the New Glarus area for 1st birthday party #3 (we have 1 more this week and 1 next month). I had a great time visiting with my friends, Annie, Carolyn, Dana and Aaron while Weston played with his buddies, Jackson and Isaac C. He was exhaustedly asleep before we got out of the driveway to head home.
Hope you enjoyed the pictures!
Monday, August 1, 2011
Updates!
I have honestly tried to sit down and write like a dozen posts but have never finished any of them. We're all doing well!
Kristopher is back to working overtime on Saturdays. The paychecks at the end of the week are nice but we miss him more than he probably knows.
I am working hard but at times feel like I am hardly working, if that makes sense. I just never see an end to the pile. My fight with migraines continues except not as often. Stress induces them big time! I keep telling myself that I need to be doing something differently to reduce all the stress but haven't had much luck. It seems that if I detour from our daily routine, I am socked with one. This past weekend was hard but I made it through!
Troy is at the age of total meltdowns and total highs and there is no inbetween, just those. He be extremely happy one minute and the next he's crying about something. He's a great kid once you see beyond that. His vocabulary is outstanding! He's been potty trained for quite a while now and what a blessing that is. We're hoping to have him start school this fall. It's a program for 3 year olds at St. Rose called Little Lambs. I had them add him to the list last year just not quite sure when he will start. He's much great big helper. He's also has a great big sassy mouth at times. His famous line tonight was, "Please mom, give me another chance..." That was chance number 126,436,212. LOL! Troy is a good 36 inches and 34 lbs. He's tall and lean and quite mighty.
Rylee is probably doing the best out of all of us for once! She's walking and talking and has been seizure free for almost a month and a half. She is great with her manners. She points out body parts and sings. She still has a version of her own language but we can pick up English words at times. She still has to point at what she wants a lot of the time and that frustrates her that most of the time we have absolutely no idea what she is trying to tell us. She is sensitive and it's easy to hurt her feelings. She schmoozes her way into what she wants. That seems to be the way it works most of the time. She is 18 lbs, 6 oz and 29.5 inches. She wears size 12 month clothes, only for the length, and size 2 shoes. She is currently in a size 3 diaper. She is small and disgustingly thin but just seems to have hit a snag in the weight gain. (The only ones gaining any weight from this high calorie diet are Kristopher and I and we don't need it!) She has an infectious laugh and copies everything that everyone says or does. Troy is her best friend and if she wants his attention, she just hollers his name until he answers her. Weston is her baby and she has taken to calling him "bubba" or "buddy" (we can't really figure out which one it is, it could quite possibly be she calls him both of those) and shakes her finger and says "no, no, no" if he is up to no good! Her therapists are extremely happy with her progress. She has met all her goals for PT and OT. We are having the big meeting with the 3 therapists and program coordinator to re-assess her goals, give her new goals and talk about school this friday. Once she turns 3 she is no longer eligible for their program anymore. SO, she has to go to school to receive therapy. I can't believe in 6 months she'll be in "school".
Weston is growing like a crazy weed. He's doing great. He's learned the art of throwing temper tantrums. He's rather good at it if I do say so myself. He will turn 1 tomorrow. I can't believe it. The year has flown right on by. I find myself sometimes thinking that I hardly spent any time with him before he went to bed. I've worked hard to try and change that.
This past weekend we had his first birthday party. It went well. I was thrown for a loop 2 hours before the party started, which upset me miserably and tossed me into a migraine that I had to force myself through. I am lucky that I had Kristopher to run home to pick up the things that I forgot about. I put on my smile and by the end of the night was extremely exhausted. We had our nephews, Isaac and Noah stay over for a sleep over after the party. Noah so graciously woke everyone in the house at 4:45 on Sunday so we started our day then and didn't end it until 11 that night. We all slept pretty good last night.
I have lots of pictures to upload and someday we will find the camera cord to upload them from the camera. Right now I am sorry, but I don't have any. SOON, I PROMISE!
Kristopher is back to working overtime on Saturdays. The paychecks at the end of the week are nice but we miss him more than he probably knows.
I am working hard but at times feel like I am hardly working, if that makes sense. I just never see an end to the pile. My fight with migraines continues except not as often. Stress induces them big time! I keep telling myself that I need to be doing something differently to reduce all the stress but haven't had much luck. It seems that if I detour from our daily routine, I am socked with one. This past weekend was hard but I made it through!
Troy is at the age of total meltdowns and total highs and there is no inbetween, just those. He be extremely happy one minute and the next he's crying about something. He's a great kid once you see beyond that. His vocabulary is outstanding! He's been potty trained for quite a while now and what a blessing that is. We're hoping to have him start school this fall. It's a program for 3 year olds at St. Rose called Little Lambs. I had them add him to the list last year just not quite sure when he will start. He's much great big helper. He's also has a great big sassy mouth at times. His famous line tonight was, "Please mom, give me another chance..." That was chance number 126,436,212. LOL! Troy is a good 36 inches and 34 lbs. He's tall and lean and quite mighty.
Rylee is probably doing the best out of all of us for once! She's walking and talking and has been seizure free for almost a month and a half. She is great with her manners. She points out body parts and sings. She still has a version of her own language but we can pick up English words at times. She still has to point at what she wants a lot of the time and that frustrates her that most of the time we have absolutely no idea what she is trying to tell us. She is sensitive and it's easy to hurt her feelings. She schmoozes her way into what she wants. That seems to be the way it works most of the time. She is 18 lbs, 6 oz and 29.5 inches. She wears size 12 month clothes, only for the length, and size 2 shoes. She is currently in a size 3 diaper. She is small and disgustingly thin but just seems to have hit a snag in the weight gain. (The only ones gaining any weight from this high calorie diet are Kristopher and I and we don't need it!) She has an infectious laugh and copies everything that everyone says or does. Troy is her best friend and if she wants his attention, she just hollers his name until he answers her. Weston is her baby and she has taken to calling him "bubba" or "buddy" (we can't really figure out which one it is, it could quite possibly be she calls him both of those) and shakes her finger and says "no, no, no" if he is up to no good! Her therapists are extremely happy with her progress. She has met all her goals for PT and OT. We are having the big meeting with the 3 therapists and program coordinator to re-assess her goals, give her new goals and talk about school this friday. Once she turns 3 she is no longer eligible for their program anymore. SO, she has to go to school to receive therapy. I can't believe in 6 months she'll be in "school".
Weston is growing like a crazy weed. He's doing great. He's learned the art of throwing temper tantrums. He's rather good at it if I do say so myself. He will turn 1 tomorrow. I can't believe it. The year has flown right on by. I find myself sometimes thinking that I hardly spent any time with him before he went to bed. I've worked hard to try and change that.
This past weekend we had his first birthday party. It went well. I was thrown for a loop 2 hours before the party started, which upset me miserably and tossed me into a migraine that I had to force myself through. I am lucky that I had Kristopher to run home to pick up the things that I forgot about. I put on my smile and by the end of the night was extremely exhausted. We had our nephews, Isaac and Noah stay over for a sleep over after the party. Noah so graciously woke everyone in the house at 4:45 on Sunday so we started our day then and didn't end it until 11 that night. We all slept pretty good last night.
I have lots of pictures to upload and someday we will find the camera cord to upload them from the camera. Right now I am sorry, but I don't have any. SOON, I PROMISE!
Friday, June 10, 2011
Handicapable!
Over at Kelly's Korner, she's having a Show Us Your Life. This week is Special Needs Families. I think it's kind of neat. I believe that sometime "Special needs" is socially viewed as a negative thing. I personally have never thought that way, in my life. In fact until High school, I always thought I would be a special needs teacher. Even in high school, I volunteered at Badger Camp.
For those coming over from Kelly's Korner, let me introduce you to the most wonderful 2 year old!
She was born at 30 weeks with obvious facial deformities. She has a Chromosomal 6 deletion q25.1-q25.2. It's an extremely small deletion but one that has filled out world with many uncertainties. Rylee has met all of her milestones, just at her own pace. She rolled at 11 months, sat at 15 months, crawled at 19 months, walked at 27 months. Cognitively, she is able to hold and use a pencil or crayon, use eating utensils, play with most toys, turn pages in a book, clap, wave and blow kisses. From a speech stand point, she can't speak much. She will mimic more than anything and she can sign a few words. She becomes frustrated and agitated easily when she is trying to communicate with us because we simply can not understand what she is trying to convey to us. She is very far behind the growth curve. She is currently 18 pounds, 6 oz and 29 inches long. Her health is relatively well right now. She suffers from Hydrocephalus so she has VP shunt to help drain her excess CSF, Chronic Kidney, lung and heart diseases, Heart murmur, ROP, Failure to thrive, hypotonia, possible growth hormone deficiency, sleep apnea, global developmental delays and new to her long list of medical imperfections are Seizures.
Rylee is not perfect to the average person. She has lots of medical issues, continuous physical, occupational and speech therapies and a never ending list of doctors visits. But to me, she is just who she was meant to be. She's special! It breaks my heart that nurses, blood pressure cuffs, iv's and those metal hospital cribs are everyday things to her. There are many many times that I get frustrated and overwhelmed by all the information and schedules but I wouldn't change it for a second. I love that little girl more than life itself. I just can't imagine her any other way. I read this poem a few months ago and it really touched my heart! If you are a parent of a special needs child, always remember that God sends children with special needs to special parents because he knows that they will be well cared for.
HEAVEN'S VERY SPECIAL CHILD
by Edna Massimilla
A meeting was held quite far from Earth
It was time again for another birth.
Said the Angels to the Lord above –
“This special child will need much love.
“Her progress may be very slow
“Accomplishment she may not show.
“And she'll require extra care
“From the folks she meets down there.
“She may not run or laugh or play
“Her thoughts may seem quite far away
“So many times she will be labeled
“'different,' 'helpless' and disabled.
“So, let's be careful where she's sent.
“We want her life to be content.
“Please, Lord, find the parents who
“Will do a special job for you.
“They will not realize right away
“The leading role they are asked to play.
“But with this child sent from above
“Comes stronger faith, and richer love.
“And soon they'll know the privilege given
“In caring for their gift from heaven.
“Their precious charge, so meek and mild
“Is heaven's very special child.”
For those coming over from Kelly's Korner, let me introduce you to the most wonderful 2 year old!
Rylee is not perfect to the average person. She has lots of medical issues, continuous physical, occupational and speech therapies and a never ending list of doctors visits. But to me, she is just who she was meant to be. She's special! It breaks my heart that nurses, blood pressure cuffs, iv's and those metal hospital cribs are everyday things to her. There are many many times that I get frustrated and overwhelmed by all the information and schedules but I wouldn't change it for a second. I love that little girl more than life itself. I just can't imagine her any other way. I read this poem a few months ago and it really touched my heart! If you are a parent of a special needs child, always remember that God sends children with special needs to special parents because he knows that they will be well cared for.
HEAVEN'S VERY SPECIAL CHILD
by Edna Massimilla
A meeting was held quite far from Earth
It was time again for another birth.
Said the Angels to the Lord above –
“This special child will need much love.
“Her progress may be very slow
“Accomplishment she may not show.
“And she'll require extra care
“From the folks she meets down there.
“She may not run or laugh or play
“Her thoughts may seem quite far away
“So many times she will be labeled
“'different,' 'helpless' and disabled.
“So, let's be careful where she's sent.
“We want her life to be content.
“Please, Lord, find the parents who
“Will do a special job for you.
“They will not realize right away
“The leading role they are asked to play.
“But with this child sent from above
“Comes stronger faith, and richer love.
“And soon they'll know the privilege given
“In caring for their gift from heaven.
“Their precious charge, so meek and mild
“Is heaven's very special child.”
Updates!
Rylee had her adenoids out on Tuesday. She had a great GI visit in the morning. Don't have to go back for roughly 3 months provided that she is followed monthly with Dr. C! AMEN! Surgery was scheduled for 3 but didn't get going until 3:30. At 4, Dr Kille came in and said that there wasn't any fluid behind the drums in her ears so he didn't do the tubes but her adenoids were very large so he removed them as planned. At 4:30 I was taken back to recovery to see her. She was still very sleepy and snoring to the high heavens! She did eventually wake up, started tracking and recognized me and drank some juice. Shortly after she sat up and drank some juice, the Rylee we love so much left her eyes and she started just staring. I, as I have seen her do this a few times before, was all over that. The nurse also got right up to her and seen it too, though he would still say he wasn't sure she had a seizure (UMM, yes she did!) A half an hour later, it happened again. Then an hour after that, it happened again. She had a flat lining moment that was a lot of scary. She slept the night away. (Seizures tend to wipe her off the face of the earth!) We were released at 11 the next day. She's been relatively fine. Super runny nose and snoring but that takes time for the swelling.
My step brother Rob had his surgery. It was a long one! He was in surgery for 12 and half hours, away from his mom and family for much more than that. He has an incision from his next to the base of his back. He woke from surgery Tuesday night with limited feeling and movement in his right arm/hand. As of Thursday night, he was able to open a milk carton with the use of both hands. Hopefully this is just swelling and he will regain all use of the arm and hand. He will go back into surgery in 7 to 10 days, depending on his arm and possible pressure sore on his hip from surgery! Pray for him to get this next phase of surgery over with and starts his way towards recovery.
That's all I got!
My step brother Rob had his surgery. It was a long one! He was in surgery for 12 and half hours, away from his mom and family for much more than that. He has an incision from his next to the base of his back. He woke from surgery Tuesday night with limited feeling and movement in his right arm/hand. As of Thursday night, he was able to open a milk carton with the use of both hands. Hopefully this is just swelling and he will regain all use of the arm and hand. He will go back into surgery in 7 to 10 days, depending on his arm and possible pressure sore on his hip from surgery! Pray for him to get this next phase of surgery over with and starts his way towards recovery.
That's all I got!
Monday, June 6, 2011
This week
Rylee is "going under" again!! Tuesday she is having her adenoids removed and possibly having some tubes placed. It's minor and we've been through this exact procedure with Troy. This time, it's so much more risky because of Rylee's medical imperfections. She had a visit with Dr. C who practically clicked his heals that she was having this done. Seriously, he walked in the room and started fist pumping! **Random tidbit of info that I find completely odd, Dr. C's on Facebook! No joke! My coworker told me this. I just find it strange. It would be much much more strange if my dad got into Facebook. Now that's just funny!** He "cleared" her for surgery. Migraine wise for me: I've been having more and more migraines that have dramatically increased in intensity, especially last week. He prescribed me some meds to take daily at bedtime (which are still sitting at the pharmacy) and gave me a sample of some meds to which he said "if they make you feel like shit, quit taking them." **My children's doctor has a nickname for me and cusses when he's talking about my medication, are we FB friend worthy, can't decide!** I also have a lump on my neck. It's a swollen lymph node. Since my paternal grandmother died of lymphoma, it has me concerned. As long as it goes away, I should be fine! Back to Tuesday, these doctors, I swear, must not have children of their own! Rylee isn't scheduled for surgery until 2:30 PM! WTF! She can't eat or have milk after midnight and she's not going to understand why I won't feed her. THEN, take her freaking adenoids out so she feels so rotten that she wont want to eat when she finally can. 1 day without food and she'll be blown away by 1 mph wind. She doesn't have the extra weight to go without food for half of a day. And its not like she'll get a ton of calories in jello or popsicles. I guess I'll have to bring her some PediaSure (she hates the hospital's Pediasure, it's the feeding tube stuff and must taste awful!) For some reason, I am completely nervous about this surgery. No clue why, it is not like the shunt revisions or anything but pretty standard. She is doing the outpatient short stay so she's spending the night. I think that is why they're not doing surgery until 2:30 because they want enough time to discharge her in the morning. Outpatient short stay pretty much means a stay that is 23 hours or less. I have to be home by 3 on Wednesday to see my handsome boys so they better not keep us too long. Pray for her, anesthesia is always a tricky thing with her, pray for the team working on her, pray the I have this uneasiness calmed. Tuesday is also the day that my step brother Rob is going into his first of 3 surgeries to repair his back. Rylee's surgery will be 30 to 45 minutes. Rob's will be 12 hours! This is an extremely risky surgery since there are nerves everywhere and crazy stuff going on in there. He will have to lay completely still for the week following and then back into surgery again. He'll be in a body cast. This surgery, I believe, will be done through his back and the next one through his front/stomach and pelvic area. There will be 3 of the best doctors in the world working on him. He's at Mayo, the best hospital! Please pray for Rob's surgery, pray for those doctors and team that they steady the entire 12 hours and pray for Rob the following week because he's going to need them.
Last week, my migraines picked up in frequency and intensity right along with my stress level. Thursday my stress level peaked. I literally felt it at one point in the day. Last week was bad! Tuesday ended badly at work. I made a couple of errors at work that cost my coworker to stay at work 40 minutes late at work. In the end, I fixed it, all the money, down the penny, was accounted for. I seen it like spilled milk, you're out the milk, she was out her 40 minutes. Mistakes happen right? I felt so awful, she was clearly upset and it was my fault she was there the extra 40 minutes. I went home Tuesday and never in my wildest dreams did I predict what would happen Wednesday. HOLY SHIT! I wasn't picked on too bad when I was a kid, nothing that was life changing or anything, so when all these kids starting to commit suicide because of bullying I never understood, it always gets better right?! I now understand how bad it hurts! Not to the extreme of those kids but it sure doesn't feel good. I have never been bad mouthed so bad in my life, at least what I know of anyway. And it wasn't just that one co worker, that's what floored me. Thursday, I got papers tossed around me, I got doors slammed around me, I still got the silent treatment. Friday was my 5 year anniversary and I spent those precious 10 minutes I got with my husband the entire day, whining how bad I didn't want to go to work. There are only 2 other people in my life that have been able to make this terrible and above it all, I still love them. I seen it as she was out 40 minutes, she practically tried to get me fired. A select few of my coworkers treated me like complete garbage. I care about every single one of my coworkers and seen them as friends. I spent my lunch hour with my sister on Friday, practically bawling in her office. I didn't deserve that. No one's time is more precious than mine and mine is no more precious than anyone else's. What followed those 40 minutes has forever changed me. Complete life lesson. Those 40 minutes have now turned into 3 days of hell! Kris and I had a big long chat Saturday night about this. I don't have the best backbone, I despise confrontation, and I wear my emotions on my shelve. I made a vow to Kris that I will never let anyone make me feel so rotten. I am going to try till it kills me to let those hurtful things roll. I will pool that frustration and take it out in a healthy way elsewhere. I will keep my emotions to myself. I will no longer allow myself to cry where I am vulnerable. That's my vow and I hate that I may come off as heartless and emotionless and lonely, but to protect myself and my those I hold dearest to me, that's what's going to happen. The BSing at work is completely out of control and I will no longer be participating (which is how it should be). I will give 110% effort at work, but when I walk out of those doors, it stays there. Just like when I step foot in the parking lot at work my husband, darling kids and family and friends stay tucked in my heart until I drive away from there at the end of the day. That is my vow and I am going to focus way too much energy in that! I am still going to care about my coworkers, I'll just let them know it after work! Talk of the happenings at Clare Bank ends NOW!
Now, I have to hit the hay and prepare myself for surgery on Tuesday.
Last week, my migraines picked up in frequency and intensity right along with my stress level. Thursday my stress level peaked. I literally felt it at one point in the day. Last week was bad! Tuesday ended badly at work. I made a couple of errors at work that cost my coworker to stay at work 40 minutes late at work. In the end, I fixed it, all the money, down the penny, was accounted for. I seen it like spilled milk, you're out the milk, she was out her 40 minutes. Mistakes happen right? I felt so awful, she was clearly upset and it was my fault she was there the extra 40 minutes. I went home Tuesday and never in my wildest dreams did I predict what would happen Wednesday. HOLY SHIT! I wasn't picked on too bad when I was a kid, nothing that was life changing or anything, so when all these kids starting to commit suicide because of bullying I never understood, it always gets better right?! I now understand how bad it hurts! Not to the extreme of those kids but it sure doesn't feel good. I have never been bad mouthed so bad in my life, at least what I know of anyway. And it wasn't just that one co worker, that's what floored me. Thursday, I got papers tossed around me, I got doors slammed around me, I still got the silent treatment. Friday was my 5 year anniversary and I spent those precious 10 minutes I got with my husband the entire day, whining how bad I didn't want to go to work. There are only 2 other people in my life that have been able to make this terrible and above it all, I still love them. I seen it as she was out 40 minutes, she practically tried to get me fired. A select few of my coworkers treated me like complete garbage. I care about every single one of my coworkers and seen them as friends. I spent my lunch hour with my sister on Friday, practically bawling in her office. I didn't deserve that. No one's time is more precious than mine and mine is no more precious than anyone else's. What followed those 40 minutes has forever changed me. Complete life lesson. Those 40 minutes have now turned into 3 days of hell! Kris and I had a big long chat Saturday night about this. I don't have the best backbone, I despise confrontation, and I wear my emotions on my shelve. I made a vow to Kris that I will never let anyone make me feel so rotten. I am going to try till it kills me to let those hurtful things roll. I will pool that frustration and take it out in a healthy way elsewhere. I will keep my emotions to myself. I will no longer allow myself to cry where I am vulnerable. That's my vow and I hate that I may come off as heartless and emotionless and lonely, but to protect myself and my those I hold dearest to me, that's what's going to happen. The BSing at work is completely out of control and I will no longer be participating (which is how it should be). I will give 110% effort at work, but when I walk out of those doors, it stays there. Just like when I step foot in the parking lot at work my husband, darling kids and family and friends stay tucked in my heart until I drive away from there at the end of the day. That is my vow and I am going to focus way too much energy in that! I am still going to care about my coworkers, I'll just let them know it after work! Talk of the happenings at Clare Bank ends NOW!
Now, I have to hit the hay and prepare myself for surgery on Tuesday.
Monday, May 23, 2011
Rob
So I know that no one probably reads this blog anymore because let's face it, I am too dang busy! I promise that I will TRY to write more often! So life around here the last 2 and half years, hasn't been very good. It's been a lot to handle and I think that we have done the best we can with what we've had thrown at us. And sometimes, I literally feel like I have been thrown under a bus. We planned on things going smoothly with Rylee and staying away from AFCH for 6 months. That's been our goal. That was our plan. I was raised and lived by a plan. I heard repeatedly throughout my youth, "plans DON'T change!" The day I had Weston, I completely ignored my body SCREAMING at me that I was in labor and my coworker said, "I think you're in labor" to which I replied, it's to early, it's not the plan. The last thing she said to me before I left that day was "just tell God your plan." On the contrary of what my youth was centered around, plans DO change. I didn't plan for my life to be like it is today. Quite the opposite actually. I just celebrated my 10th year at Clare Bank. Very awesome. My boss is Deb. She has been my boss for the last 10 years. A few years ago she became my Dad's girlfriend. A year after they had been dating, I had to call my boss Deb and tell her that an employee at one of branch bank's stole. She didn't question me, she handled it. 4 days later, my dad's girlfriend Deb got a call at work (while she was being my boss Deb) that her son, Rob, fell. He feel off the roof of a 2 story home that the construction company he worked for was building. 4 days earlier, I got a huge life changing lesson! 4 days after that, Rob had a life change. His spinal cord was completely severed. He was paralyzed from the belly button down. On the days that I think my life sucks, I think about Rob. He took the news of life in a wheelchair like it was no big deal. Just a bump in the road! Now, jump forward to today. Last September, my dad's girlfriend Deb became my dad's wife Deb. That night I watch Deb sit on Rob's lap and dance. In July, it will be 3 years since his accident. A couple weeks ago, he reached his 100th consecutive day in the hospital. He's battling the mother of all pressure sores right now. He has been dealing with all of this since Thanksgiving, I believe! I am not writing this post for your sympathy towards him because I am sure he wouldn't want it. He's incredible by the way. Rob is one of those people you HAVE to meet in your life. Like write Rob Weigel down on your bucket list! He really is that AWESOME! He's at the St. Mary's hospital in Rochester, MN. Just down the street from the Mayo Clinic. It's the hospital that presidents go to. It's that awesome! My stepmom Deb being my boss Deb today, told me about a paralyzed man who had an electrical device implanted in his spine and now he can move his toes. And get this, his name is Rob. Coincidence? I think NOT! Maybe it's fate that it worked for that Rob now make it work for our Rob. He has such a long road ahead of him already. He's going to have surgery again, hopefully soon that will be broke up in 3 parts, it's that huge to remove the rods in his spine, fix what's going on in there and piece him back together. Rob may most likely never walk again but that doesn't mean that we stop praying.
Sunday, May 15, 2011
May flowers
We misplaced our cord to upload photos from our camera so I don't have any pics. We have some good ones that I love too. Soon I promise!
What happened to this month? What happened to April? We spent a lot of April at the hospital or doctors office. Hopefully that won't be the case for a while!
Here's some updates on what's been happening with us the last monthish?!
ME:
I have been having terrible migraines AGAIN!! It most like stress contributing to these. Dr. C says I can't blame them solely on stress but it definitely contributes. Migraines, in case you have never had the chance to experience one, is an out of body experience! They're that bad. So bad you wish yourself out of your body. I have had plenty of them before but they intensified lately and started playing with my vision and stomach. So I now have some meds and if those don't work than we'll take a different approach. They've been running my life lately so that is all that I have.
Kristopher:
He's even less exciting than I am. Other than a little case of the flu he's been just doing the same old same old. Which will stay that way as he didn't get the job at John Deere. He's pretty bummed about it but he also has a stable job now and John Deere has a reputation for hiring a bunch of people and then laying them off shortly after. So it just wasn't meant to be.
Weston aka "Weston Bobby":
He's growing into quite the little man. He worms his way into mischief. Literally, he does the worm. He can't quite get the crawling concept down and he completely content with the worm. He seen Dr. C on Thursday as well and got a perfect report. He is 18 pounds, 14 oz, 28.25 inches long, and has a 17" head circumference. His head circumference and weight are in the 25th percentile while his length is in the 50th percentile. He currently wears size 3 diapers and size 6 to 9 month clothes. He can't quite sit by himself yet. We are to push him into that and taking steps while we hold him up. He eats like a horse. He loves his milk but also likes his stage 3 baby foods and we have even given him table foods. He absolutely adores his big brother and big sister. Troy is about the only one who can get him to laugh out loud by doing some of the weirdest things. Overall, he's a happy, healthy 9 month old little boy.
Rylee:
She may have had a rough start in April but she's been doing fairly well since. She went almost a month without a seizure. Then Thursday morning she had one or so we think. We're not really sure, which is common. She had a sleep study on May 1st. The nurse that called me with the results said "Rylee failed with flying colors." We expected her to say that. Now she has to go to the ENT doctor for a possible tonsillectomy with adenoids. Then either after that appointment or if surgery is needed, than after surgery, she will have to go back to Pulmonary. Dr. S said that he thought he tonsils looked fine. Dr. C thinks that removing her adenoids will be good since she is constantly congested and has a running nose. Either way I think that CPAP is inevitable. She will meet with the ENT doctor on May 24th at the children's hospital. I thought we were trying to not go there so much, apparently NOT yet. On the good side, she is walking a lot more lately. She is also talking more. Her new words are "Carmen", "Jalyn", "OY (Troy)" "JVKJEIOAJH Bobby (Weston Bobby)" "ME" "MOM" or "MA" and she will repeat whatever we say to her. She is becoming increasingly interested in potty things.
Troy:
He says some of the funniest things! He is constantly asking us "What does that word mean?" He always needs to figure out everything. He also ALWAYS disagrees and argues with us. If we tell him to do something his reply is always "UH HUH" which his little sister has started mocking. For example, today we were talking about eye color. We told him he has brown eyes and Rylee has blue eyes. He replied "UH HUH, I don't want brown eyes, I want blue eyes." Kris was naming off all the awesome people who have brown eyes "Dad has brown eyes, Weston has brown eyes, Grandma has brown eyes." Now for the rest of the day Troy has been talking about going to Grandma's house to see her brown eyes. I even told him, no we're not going to Grandma's today and he said "DON'T SAY THAT WORD MOM!" We found out how much we have to watch what we say. The other day in the car he said clear as day "What the hell is that robot doing?" Opps! Trying to break that one. After a stern scolding, he hasn't said it since. He wants to go to school and tells me repeatedly so. He is such a great little man!
What happened to this month? What happened to April? We spent a lot of April at the hospital or doctors office. Hopefully that won't be the case for a while!
Here's some updates on what's been happening with us the last monthish?!
ME:
I have been having terrible migraines AGAIN!! It most like stress contributing to these. Dr. C says I can't blame them solely on stress but it definitely contributes. Migraines, in case you have never had the chance to experience one, is an out of body experience! They're that bad. So bad you wish yourself out of your body. I have had plenty of them before but they intensified lately and started playing with my vision and stomach. So I now have some meds and if those don't work than we'll take a different approach. They've been running my life lately so that is all that I have.
Kristopher:
He's even less exciting than I am. Other than a little case of the flu he's been just doing the same old same old. Which will stay that way as he didn't get the job at John Deere. He's pretty bummed about it but he also has a stable job now and John Deere has a reputation for hiring a bunch of people and then laying them off shortly after. So it just wasn't meant to be.
Weston aka "Weston Bobby":
He's growing into quite the little man. He worms his way into mischief. Literally, he does the worm. He can't quite get the crawling concept down and he completely content with the worm. He seen Dr. C on Thursday as well and got a perfect report. He is 18 pounds, 14 oz, 28.25 inches long, and has a 17" head circumference. His head circumference and weight are in the 25th percentile while his length is in the 50th percentile. He currently wears size 3 diapers and size 6 to 9 month clothes. He can't quite sit by himself yet. We are to push him into that and taking steps while we hold him up. He eats like a horse. He loves his milk but also likes his stage 3 baby foods and we have even given him table foods. He absolutely adores his big brother and big sister. Troy is about the only one who can get him to laugh out loud by doing some of the weirdest things. Overall, he's a happy, healthy 9 month old little boy.
Rylee:
She may have had a rough start in April but she's been doing fairly well since. She went almost a month without a seizure. Then Thursday morning she had one or so we think. We're not really sure, which is common. She had a sleep study on May 1st. The nurse that called me with the results said "Rylee failed with flying colors." We expected her to say that. Now she has to go to the ENT doctor for a possible tonsillectomy with adenoids. Then either after that appointment or if surgery is needed, than after surgery, she will have to go back to Pulmonary. Dr. S said that he thought he tonsils looked fine. Dr. C thinks that removing her adenoids will be good since she is constantly congested and has a running nose. Either way I think that CPAP is inevitable. She will meet with the ENT doctor on May 24th at the children's hospital. I thought we were trying to not go there so much, apparently NOT yet. On the good side, she is walking a lot more lately. She is also talking more. Her new words are "Carmen", "Jalyn", "OY (Troy)" "JVKJEIOAJH Bobby (Weston Bobby)" "ME" "MOM" or "MA" and she will repeat whatever we say to her. She is becoming increasingly interested in potty things.
Troy:
He says some of the funniest things! He is constantly asking us "What does that word mean?" He always needs to figure out everything. He also ALWAYS disagrees and argues with us. If we tell him to do something his reply is always "UH HUH" which his little sister has started mocking. For example, today we were talking about eye color. We told him he has brown eyes and Rylee has blue eyes. He replied "UH HUH, I don't want brown eyes, I want blue eyes." Kris was naming off all the awesome people who have brown eyes "Dad has brown eyes, Weston has brown eyes, Grandma has brown eyes." Now for the rest of the day Troy has been talking about going to Grandma's house to see her brown eyes. I even told him, no we're not going to Grandma's today and he said "DON'T SAY THAT WORD MOM!" We found out how much we have to watch what we say. The other day in the car he said clear as day "What the hell is that robot doing?" Opps! Trying to break that one. After a stern scolding, he hasn't said it since. He wants to go to school and tells me repeatedly so. He is such a great little man!
Monday, April 18, 2011
Personal Vendetta? Voodoo? Cursed?
I have to say that in the last week, those in the title of this post have crossed my mind a MILLION times. Needless to say the last week has been rough on us. More than rough and more than the last week, more the last 2 weeks. To make the story stories short, this has been the past 13 days....
Tuesday, April 5 - ER trip to UW for possible shunt malfunction and possible seizures that turned into an overnight stay for observation. Conclusion: Not much but high white blood cells.
Friday, April 8 - Rylee showed Dr. Connolly her sick side, didn't even give him a smile. I think it scared the dickens out of him. He kept saying, "I'm sorry, something is wrong but I don't know what."
Tuesday, April 12 - Rylee had a seizure at home.
Wednesday, April 13 - Rylee's neurosurgeon wanted to her in Madison, right away. So we packed up the car and rushed up there. We only made it to Mt. Horeb before the car DIED! It quit. NO JOKE! After a tow and a ride to the Children's hospital from my godsend, Aunt Lisa, we made it, almost 2 hours late! Oh well.
Friday, April 15 - After 2 days, 36 hours on a video EEG, we got the word we could go home. I washed Rylee's hair and while I was cleaning up the shower, she threw my cell phone in it and killed it. Kris and the boys, who had been bounced between Grandma and Grandpa Klauer and daddy, came to get us. Since Wednesday, Weston had been very irritable, crabby and had the start of a rash. Maybe he just missed his mommy right? NOPE!!
Saturday, April 16 - Daddy took a test at John Deere, hoping for a new job, great benefits and FIRST shift!! (PRAY FOR THIS!!) When daddy got home, I took Weston to Urgent Care. The doctor walked in and looked at Weston's face and said "WOW, I haven't seen this in a VERY LONG TIME! I think he might have measles." After a look in his mouth and not finding any Koplik's spot, he said it's a viral rash and double ear infection and sent us home with an antibiotic.
Monday, April 18 - Weston's rash changed in the way that it looked. The measles thing didn't sit well with me, so I took him to the clinic. Dr. C was out for the day, Dr. White was booked, all the women physicians are pregnant so we got newbie Dr. Tuthill. He looked at him, grabbed a mask and a masked Dr. White who said "Lots of viruses mimic the measles, but he is showing almost every sign of the actual measles. We have to treat with the Measles." So Grant County was called and Lafayette County Health Department has checked in with us twice.
I'll be honest, I have had a few pity parties but not to often. I have before asked why all of this happens to my child or to me. But seriously, the 6 days have been loaded of bad luck or whatever you want to call this. And I find myself asking, WHY US? Why does Rylee have to have some many things stacked against and now seizures too...WHY? Why does Weston, a baby, have to have Measles....WHY? Why does Troy have to be bounced around all the time that he is constantly telling me he misses me and never wants to leave home anymore...WHY? Why do Kris and I have to sit back and watch our children go through test after test and shed tear after tear...WHY?
I know life is not fair but this is just NOT fair for any of us. I don't understand what is going on here. I don't know what we ever did to deserve this stuff that has been thrown at us. Until today, I have handled all of this lately. With as much ease as I could. I haven't shed a tear...Until today. Today, I cried my whole way home. Alone in the car, I cried. I cried for my kids and husband. I cried about our life because we just can't catch a break. I feel as though I've reached the top of what I am capable of handling but I know through all of this that it could be a lot worse. And for that, I am lucky. I am lucky to have a great husband and father of my children. And I am really lucky to have my children. I am lucky to have Rylee today. I am lucky to have Troy to put humor into our day. I am lucky to get those looks from Weston like he absolutely adores me. I may have a whole heck of alot of bad luck but I still my family and for that I am grateful.
Tuesday, April 5 - ER trip to UW for possible shunt malfunction and possible seizures that turned into an overnight stay for observation. Conclusion: Not much but high white blood cells.
Friday, April 8 - Rylee showed Dr. Connolly her sick side, didn't even give him a smile. I think it scared the dickens out of him. He kept saying, "I'm sorry, something is wrong but I don't know what."
Tuesday, April 12 - Rylee had a seizure at home.
Wednesday, April 13 - Rylee's neurosurgeon wanted to her in Madison, right away. So we packed up the car and rushed up there. We only made it to Mt. Horeb before the car DIED! It quit. NO JOKE! After a tow and a ride to the Children's hospital from my godsend, Aunt Lisa, we made it, almost 2 hours late! Oh well.
Friday, April 15 - After 2 days, 36 hours on a video EEG, we got the word we could go home. I washed Rylee's hair and while I was cleaning up the shower, she threw my cell phone in it and killed it. Kris and the boys, who had been bounced between Grandma and Grandpa Klauer and daddy, came to get us. Since Wednesday, Weston had been very irritable, crabby and had the start of a rash. Maybe he just missed his mommy right? NOPE!!
Saturday, April 16 - Daddy took a test at John Deere, hoping for a new job, great benefits and FIRST shift!! (PRAY FOR THIS!!) When daddy got home, I took Weston to Urgent Care. The doctor walked in and looked at Weston's face and said "WOW, I haven't seen this in a VERY LONG TIME! I think he might have measles." After a look in his mouth and not finding any Koplik's spot, he said it's a viral rash and double ear infection and sent us home with an antibiotic.
Monday, April 18 - Weston's rash changed in the way that it looked. The measles thing didn't sit well with me, so I took him to the clinic. Dr. C was out for the day, Dr. White was booked, all the women physicians are pregnant so we got newbie Dr. Tuthill. He looked at him, grabbed a mask and a masked Dr. White who said "Lots of viruses mimic the measles, but he is showing almost every sign of the actual measles. We have to treat with the Measles." So Grant County was called and Lafayette County Health Department has checked in with us twice.
I'll be honest, I have had a few pity parties but not to often. I have before asked why all of this happens to my child or to me. But seriously, the 6 days have been loaded of bad luck or whatever you want to call this. And I find myself asking, WHY US? Why does Rylee have to have some many things stacked against and now seizures too...WHY? Why does Weston, a baby, have to have Measles....WHY? Why does Troy have to be bounced around all the time that he is constantly telling me he misses me and never wants to leave home anymore...WHY? Why do Kris and I have to sit back and watch our children go through test after test and shed tear after tear...WHY?
I know life is not fair but this is just NOT fair for any of us. I don't understand what is going on here. I don't know what we ever did to deserve this stuff that has been thrown at us. Until today, I have handled all of this lately. With as much ease as I could. I haven't shed a tear...Until today. Today, I cried my whole way home. Alone in the car, I cried. I cried for my kids and husband. I cried about our life because we just can't catch a break. I feel as though I've reached the top of what I am capable of handling but I know through all of this that it could be a lot worse. And for that, I am lucky. I am lucky to have a great husband and father of my children. And I am really lucky to have my children. I am lucky to have Rylee today. I am lucky to have Troy to put humor into our day. I am lucky to get those looks from Weston like he absolutely adores me. I may have a whole heck of alot of bad luck but I still my family and for that I am grateful.
Wednesday, April 6, 2011
Rylee's expensive head
Rylee's $500k head isn't quite sure if wants that shunt in there or not. Her head circumference increased a centimeter in 12 days. No alarms went off because she wasn't showing any signs of a malfunctioning shunt but typical Rylee doesn't show signs until its really bad. Monday night I noticed her holding her head and rubbing her shunt. Then noticed her staring off into space, sometimes her mouth was making a chewing motion. So I called the UW Neurosurgery and spoke with a nurse who said to go to the ER. My in-laws took the boys for us and my sister joined me on the trip to Madison. Once we got to the ER, Rylee was schmoozing with the doctors and nurses. So we pretty much thought that we had wasted a trip up until they got the MRI quick brain scan results which showed her ventricles were slightly enlarged. They admitted her for overnight observation. She's been fine the entire time we have been up here other than holding and rubbing her head a few times. Right now, Kris and Rylee are lounging in a recliner watching Mickey Mouse Clubhouse and I am on the couch writing to all you fine people. We're hoping and praying that everything is peachy keen, no seizures and no shunt revision and we can go home soon. The neuro residents came in about 2 hours ago and we haven't heard anything since so I have no idea what is going on.
We're definitely ready to get out this place. I haven't ate in nearly 24 hours and Rylee hasn't ate since the animal crackers and applesauce I feed her for dinner last night at 10 pm (because she has been NPO since midnight). We're all ready to break out and go eat. Please pray that these doctors come visit us soon and get us out of here!
We're definitely ready to get out this place. I haven't ate in nearly 24 hours and Rylee hasn't ate since the animal crackers and applesauce I feed her for dinner last night at 10 pm (because she has been NPO since midnight). We're all ready to break out and go eat. Please pray that these doctors come visit us soon and get us out of here!
Wednesday, March 16, 2011
Prayers
I am asking you all to say a few prayers.
Please pray for my step brother tomorrow and in the weeks to come. This poor guy was in a hospital for 3 weeks then came down to Grant County to spend 5 or 6 weeks in a nursing home. He's going crazy. Here's the story, he is a paraplegic and has a back that is broken more than it was originally from his accident. Between the rods and his broken back, he has developed pressure sores. He needs to have the rods removed and his back fixed but he can't with the pressure sores. It's a double edged sword because he can't have the surgery with those pressure sores. So tomorrow, he will leave Grant County and head back up to Mayo Clinic in Rochester to have a surgery to help that pressure sore, that just can't heal fast enough, heal. After the surgery, he has to stay on his stomach. He's a very active person so this is difficult for him. This accident that happened almost 3 years ago couldn't have happened to a stronger willed person and it's too bad that he has to deal with this set back. He's having surgery tomorrow for that pressure sore and hopefully in 6 weeks or so, that'll be healed then he can have his back surgery and then 3 to 6 weeks after that he can go back to living his normal life.
The second prayer I have for you is a little girl named Lucy. 3 weeks ago, her mom took her to the doctor for she thought was a cold and dehydration. The next day, she went into surgery to have 3 brain tumors and a large tumor on her spine removed or shaven down. She developed Hydrocephalus after the surgery and then contracted meningitis and had to have surgery a few days ago to drain the spinal fluid off her spine. She went from 38 pounds to 26 or so. She celebrated her 5th birthday in the hospital fighting for her life and sick as a dog. Today, she was moved to St. Jude's Children Hospital, leaking spinal fluid and all (which could send her back to the other hospital) to start her chemo treatment. Her mom is having a hard time and is trying hard to accept this. This is a beautiful little girl with big bright blue eyes but now her eyes look empty. It's sad. It's so sad. Her story just got to me, so please pray that the cancer hasn't grown, that her spinal fluid is clear, that her body heals and quite leaking CSF and that this lethal dose of chemo cures this cancer.
I usually think it's ridiculous when people ask for prayers for themselves but I am going to break my pet peeve for a couple tiny requests. PLEASE pray that God grants me some peace with this MRI on Friday. I am so nerves. I am going alone as Kris has to work. Kris's parents are taking the boys for the night in case we have to stay. I am going to go crazy the entire 3 hours the MRI takes. I am not nerves about the MRI itself, I am nerves about the anesthesia part. Please pray that everything goes smoothly.
Also, I had an ingrown toe nail and cut my toenail back. Then I bumped that toe. NOW, it's red and purple and hurts something terrible. And, I have a blister type sore that goes way under my toes. UGH! Please pray that this magically heals itself in the next 12 hours! I dont have time for this mess. Plus I am so tied. This time change has me all out of whack!
So I will send with my favorite prayer. Keep praying everyone. The power of pray is a crazy miracle!
God grant me the serenity
to accept the things I cannot change;
courage to change the things I can;
and wisdom to know the difference.
Living one day at a time;
Enjoying one moment at a time;
Accepting hardships as the pathway to peace;
Taking, as He did, this sinful world
as it is, not as I would have it;
Trusting that He will make all things right
if I surrender to His Will;
That I may be reasonably happy in this life
and supremely happy with Him
Forever in the next.
Amen.
Mary
Please pray for my step brother tomorrow and in the weeks to come. This poor guy was in a hospital for 3 weeks then came down to Grant County to spend 5 or 6 weeks in a nursing home. He's going crazy. Here's the story, he is a paraplegic and has a back that is broken more than it was originally from his accident. Between the rods and his broken back, he has developed pressure sores. He needs to have the rods removed and his back fixed but he can't with the pressure sores. It's a double edged sword because he can't have the surgery with those pressure sores. So tomorrow, he will leave Grant County and head back up to Mayo Clinic in Rochester to have a surgery to help that pressure sore, that just can't heal fast enough, heal. After the surgery, he has to stay on his stomach. He's a very active person so this is difficult for him. This accident that happened almost 3 years ago couldn't have happened to a stronger willed person and it's too bad that he has to deal with this set back. He's having surgery tomorrow for that pressure sore and hopefully in 6 weeks or so, that'll be healed then he can have his back surgery and then 3 to 6 weeks after that he can go back to living his normal life.
The second prayer I have for you is a little girl named Lucy. 3 weeks ago, her mom took her to the doctor for she thought was a cold and dehydration. The next day, she went into surgery to have 3 brain tumors and a large tumor on her spine removed or shaven down. She developed Hydrocephalus after the surgery and then contracted meningitis and had to have surgery a few days ago to drain the spinal fluid off her spine. She went from 38 pounds to 26 or so. She celebrated her 5th birthday in the hospital fighting for her life and sick as a dog. Today, she was moved to St. Jude's Children Hospital, leaking spinal fluid and all (which could send her back to the other hospital) to start her chemo treatment. Her mom is having a hard time and is trying hard to accept this. This is a beautiful little girl with big bright blue eyes but now her eyes look empty. It's sad. It's so sad. Her story just got to me, so please pray that the cancer hasn't grown, that her spinal fluid is clear, that her body heals and quite leaking CSF and that this lethal dose of chemo cures this cancer.
I usually think it's ridiculous when people ask for prayers for themselves but I am going to break my pet peeve for a couple tiny requests. PLEASE pray that God grants me some peace with this MRI on Friday. I am so nerves. I am going alone as Kris has to work. Kris's parents are taking the boys for the night in case we have to stay. I am going to go crazy the entire 3 hours the MRI takes. I am not nerves about the MRI itself, I am nerves about the anesthesia part. Please pray that everything goes smoothly.
Also, I had an ingrown toe nail and cut my toenail back. Then I bumped that toe. NOW, it's red and purple and hurts something terrible. And, I have a blister type sore that goes way under my toes. UGH! Please pray that this magically heals itself in the next 12 hours! I dont have time for this mess. Plus I am so tied. This time change has me all out of whack!
So I will send with my favorite prayer. Keep praying everyone. The power of pray is a crazy miracle!
God grant me the serenity
to accept the things I cannot change;
courage to change the things I can;
and wisdom to know the difference.
Living one day at a time;
Enjoying one moment at a time;
Accepting hardships as the pathway to peace;
Taking, as He did, this sinful world
as it is, not as I would have it;
Trusting that He will make all things right
if I surrender to His Will;
That I may be reasonably happy in this life
and supremely happy with Him
Forever in the next.
Amen.
--Reinhold Niebuhr
Mary
Monday, March 7, 2011
Best Day of my life
Getting married to the love of my life was one of the best days of my life, when I became a mommy all 3 times were a few of the best days of my life, Rylee's 2nd day of life was one of the best days of my life, today one of our dreams for Rylee came true. Rylee took her first steps by herself tonight. By bedtime a mere 2 hours later, she was walking all over. WALKING! Absolutely amazing. My micropreemie is a big girl now.
Poor Troy is going to go from doing what he wants, when he wants to having his little sister run after him and soon his little brother crawling after him. He'll be so annoyed! **The video was taken with my phone, sorry that it is fuzzy**
I was interest to see what Rylee was like this time last year. I found this:
That was March 17, 2010. Kinda awesome huh? Close to a year ago we thought we had witnessed a miracle. I was proud that day. I am proud today. After 25 1/2 months, she finally walked. I can't believe it! I am emailing the video off to her therapy coordinator to show her physical therapist, who doesn't come here to see here until next Thursday. I am so so so excited. And, poor Kristopher's phone snapped, crackled and died so until we get him a new one he's without, so he has no idea. Right now, no idea. I can't wait until he gets home. I guarantee that first thing tomorrow, he makes her walk for him. I look forward to it! Good night all!
Poor Troy is going to go from doing what he wants, when he wants to having his little sister run after him and soon his little brother crawling after him. He'll be so annoyed! **The video was taken with my phone, sorry that it is fuzzy**
I was interest to see what Rylee was like this time last year. I found this:
That was March 17, 2010. Kinda awesome huh? Close to a year ago we thought we had witnessed a miracle. I was proud that day. I am proud today. After 25 1/2 months, she finally walked. I can't believe it! I am emailing the video off to her therapy coordinator to show her physical therapist, who doesn't come here to see here until next Thursday. I am so so so excited. And, poor Kristopher's phone snapped, crackled and died so until we get him a new one he's without, so he has no idea. Right now, no idea. I can't wait until he gets home. I guarantee that first thing tomorrow, he makes her walk for him. I look forward to it! Good night all!
Thursday, February 24, 2011
Busy Days!
Life at the Klauer household has been truckin' along. We've been in our rhythm. So here's an update of each of us...
Kristopher:
Pretty much the same old same old. He is recovering from Strep that I gave to him and then he gave back to me. At least we share well!
ME ME MEEEEEE...
There isn't really anything new about me. I had a birthday on the 19th. It was nice, except the strep throat part, and I enjoyed turning 26. It was easy. Kristopher and I took Rylee and Troy to spend the night with Grandma and Grandpa Klauer. They had a great time and both were crashed within minutes of leaving. Kristopher, Weston and I went to the Melting Pot for what Kristopher calls "Linner" because it was 3:30 in the afternoon, too late for lunch, too early for dinner so Linner. Then we went to an Imax movie, which I have never experienced. We saw I am Number 4. Let me tell you on tidbit of info about me, I am not a scary movie person. I had seen a trailer for the movie but didnt think it would be "scary" but I was startled twice thoughout that movie. PG13 my big ol' hiney! I enjoyed the storyline of the movie but I think I will just read the book instead! Or watch the next movie, I am pretty sure will be a series of movies since there is a series of books, at home with all the lights on! haha!
Weston:
On Feb. 10 we took Wes to his 6 month well child checkup. He's in the 25% for height and weight and 50% for his head circumference. He looks like, and I say this because I absolutely love him, the marshmallow man! He's a little rolly polly but technically underweight! Dr. C says if he wakes at night and wants to eat, feed him, he's a growing boy!! He's a rolling fool. He's getting ready to sit. He can sit for a little while then falls over. He's not so keen on cereal or oatmeal and not much for baby food! He did however eat a small jar of bananas tonight. I love this little boy so much!
Troy:
On Feb 10, Troy also had his well child visit just his 3 year, no shots at that one. Dr. C said this is a shocker but he has been consistently 90% for his weight his entire life! He is at the 50% for his height. He's not fat by any means just a muscular little boy. He hefts his brother and sister around where ever he wants them to be, against the likings of mom and dad! We were concerned about his eyes. They seemed a little off. Dr. C also thought so so he suggested and recommended seeing an eye doctor for the possibility of glasses. So on Feb 17, he met Dr. Scott and we learned that he has misaligned eyes and is farsighted. So he has new spectacles. Since turning 3 almost 2 months ago, he has grown up before our eyes. Literally overnight, he was potty trained both night and day. Then on Tuesday when I put his glasses on him, I lost my baby. He says the funniest things and most serious things. Just tonight he was in the bathroom going potty and I went in to check on him, he looked at me and said "excuse me, close the door now mom, don't be looking at my boy parts!" He told me I guess. I don't think that we have to worry about him running around naked.
Rylee:
I saved her for last for a reason. Because she is the most difficult and has the largest update, I am sure. On Feb 10 she joined her brothers at Dr. C office for her 2 year well child check up. She was a sick little girl. Earlier in the day we had been at the doctor in Madison and she was fine. Then 3 hours later, she had a 102°F. Weird. Turns out she had a bad double ear infection so Dr. C prescribed her the famous Omnicef. 3 days later, as we getting ready for church we found the hives. As it turns out, Dr. C has switched churches and is now a member of the same one we belong to so we jumped him after church and he ordered her a new antibiotic. Worked like a charm. By the following Wednesday, you could barely see the hives and she "talked" to Dr. C for the first time and of course gave him her famous smile that melts his heart so. As for trips to Madison, there have been many. On Jan 19, Rylee had a repeat swallow study. Turns out she has some penetration when drinking from a sippy cup so no more sippy cup, only cups with straws and a limit of 5 swallows. And she needs to be taking smaller bites. On Jan 27, her and I met a urologist, Dr. Kryger, who wanted to do an ultrasound on her kidneys and potentially a MRI of her spine. She also had an echocardiogram that day and met the cardiology doctor, Dr. Hokenson, afterwards. Her heart still has a hole in it which apparently is relatively common and she has regurgitation. Dr. Hokenson said that on a broad spectrum of kids, he wouldn't need to see her again however, considering Rylee's medical history and lack of definitive diagnosis, he wants to see her at age 5. That's great! On Feb 10, we made the trek up to Madison in the morning before all the well child visits, to have the ultrasound of her kidneys done. Her kidneys are a high normal size for her age however, she is not a normal size for her age. Everything with her kidneys are fine. There is no reflux or anything which is great. Dr. Kryger ordered her to have a MRI of her spine and that will be March 18th. I am crazy nerves for this. She has to be put under for it and it will take 3 hours. CRAZY! She has a couple of appointments on March 1st. One with her GI doctor who called me on Feb 1st. She had seen Rylee's weight from the Jan 27 appts and was quite concerned. I am certain that on at this appointment we will be faced to make the decision of the feeding tube. Dr. Cathy thinks that it is time or at least that is what I gathered when I spoke to her Feb 1. On March 1 she also meets with a Pulmonary doctor, Dr. Sanders, at least that's who I think we are suppose to see Dr. C can't find that doctor and has been trying to get ahold of him. Dr. C, Kris and I spoke about Rylee's breathing when she is sleeping. She tends to retract and on average 3-5 times a night just quite breathing all together so we hear her constantly take a great big deep breath. So Dr. C wanted to talk to Dr. Sanders about this issue before we came up (the cardiac doctor referred us to Dr. Sanders) so he will be well aware of what he is up against when we get there and possibly start her on CPAP before this appointment. So far, I haven't heard anything from Dr. C so I guess we'll wait until the appointment on the 1st. March 1st may bring new tubes to Rylee. I am quite nerves about this appointment. Rather sick to my stomach, sit and cry nerves. I fear for her. I know her weight isn't going to be great, she hasn't been eating well and is definitely not sleeping very well. Sleeping has been quite the issue the last few nights. The last 3 nights, I think she has average about 18 waking times each night. It's been ridiculous. It also doesn't help that I have been having awful migraines and she has made me want to slam my head through a brick wall. Kris and I are at our wits end. Kristopher hasn't even slept in our bed for 2 nights because he has been sleeping out in the chair in the living room with her. Between her and Weston, we don't get much rest!
As you can tell, our lives are busy. We have a little man who keeps us entertained with his quirky little stories and statements, a baby boy that we are trying to push along to crawl and laugh and a Princess that we are pushing and praying will walk some day soon. I promise new picture soon!
Kristopher:
Pretty much the same old same old. He is recovering from Strep that I gave to him and then he gave back to me. At least we share well!
ME ME MEEEEEE...
There isn't really anything new about me. I had a birthday on the 19th. It was nice, except the strep throat part, and I enjoyed turning 26. It was easy. Kristopher and I took Rylee and Troy to spend the night with Grandma and Grandpa Klauer. They had a great time and both were crashed within minutes of leaving. Kristopher, Weston and I went to the Melting Pot for what Kristopher calls "Linner" because it was 3:30 in the afternoon, too late for lunch, too early for dinner so Linner. Then we went to an Imax movie, which I have never experienced. We saw I am Number 4. Let me tell you on tidbit of info about me, I am not a scary movie person. I had seen a trailer for the movie but didnt think it would be "scary" but I was startled twice thoughout that movie. PG13 my big ol' hiney! I enjoyed the storyline of the movie but I think I will just read the book instead! Or watch the next movie, I am pretty sure will be a series of movies since there is a series of books, at home with all the lights on! haha!
Weston:
On Feb. 10 we took Wes to his 6 month well child checkup. He's in the 25% for height and weight and 50% for his head circumference. He looks like, and I say this because I absolutely love him, the marshmallow man! He's a little rolly polly but technically underweight! Dr. C says if he wakes at night and wants to eat, feed him, he's a growing boy!! He's a rolling fool. He's getting ready to sit. He can sit for a little while then falls over. He's not so keen on cereal or oatmeal and not much for baby food! He did however eat a small jar of bananas tonight. I love this little boy so much!
Troy:
On Feb 10, Troy also had his well child visit just his 3 year, no shots at that one. Dr. C said this is a shocker but he has been consistently 90% for his weight his entire life! He is at the 50% for his height. He's not fat by any means just a muscular little boy. He hefts his brother and sister around where ever he wants them to be, against the likings of mom and dad! We were concerned about his eyes. They seemed a little off. Dr. C also thought so so he suggested and recommended seeing an eye doctor for the possibility of glasses. So on Feb 17, he met Dr. Scott and we learned that he has misaligned eyes and is farsighted. So he has new spectacles. Since turning 3 almost 2 months ago, he has grown up before our eyes. Literally overnight, he was potty trained both night and day. Then on Tuesday when I put his glasses on him, I lost my baby. He says the funniest things and most serious things. Just tonight he was in the bathroom going potty and I went in to check on him, he looked at me and said "excuse me, close the door now mom, don't be looking at my boy parts!" He told me I guess. I don't think that we have to worry about him running around naked.
Rylee:
I saved her for last for a reason. Because she is the most difficult and has the largest update, I am sure. On Feb 10 she joined her brothers at Dr. C office for her 2 year well child check up. She was a sick little girl. Earlier in the day we had been at the doctor in Madison and she was fine. Then 3 hours later, she had a 102°F. Weird. Turns out she had a bad double ear infection so Dr. C prescribed her the famous Omnicef. 3 days later, as we getting ready for church we found the hives. As it turns out, Dr. C has switched churches and is now a member of the same one we belong to so we jumped him after church and he ordered her a new antibiotic. Worked like a charm. By the following Wednesday, you could barely see the hives and she "talked" to Dr. C for the first time and of course gave him her famous smile that melts his heart so. As for trips to Madison, there have been many. On Jan 19, Rylee had a repeat swallow study. Turns out she has some penetration when drinking from a sippy cup so no more sippy cup, only cups with straws and a limit of 5 swallows. And she needs to be taking smaller bites. On Jan 27, her and I met a urologist, Dr. Kryger, who wanted to do an ultrasound on her kidneys and potentially a MRI of her spine. She also had an echocardiogram that day and met the cardiology doctor, Dr. Hokenson, afterwards. Her heart still has a hole in it which apparently is relatively common and she has regurgitation. Dr. Hokenson said that on a broad spectrum of kids, he wouldn't need to see her again however, considering Rylee's medical history and lack of definitive diagnosis, he wants to see her at age 5. That's great! On Feb 10, we made the trek up to Madison in the morning before all the well child visits, to have the ultrasound of her kidneys done. Her kidneys are a high normal size for her age however, she is not a normal size for her age. Everything with her kidneys are fine. There is no reflux or anything which is great. Dr. Kryger ordered her to have a MRI of her spine and that will be March 18th. I am crazy nerves for this. She has to be put under for it and it will take 3 hours. CRAZY! She has a couple of appointments on March 1st. One with her GI doctor who called me on Feb 1st. She had seen Rylee's weight from the Jan 27 appts and was quite concerned. I am certain that on at this appointment we will be faced to make the decision of the feeding tube. Dr. Cathy thinks that it is time or at least that is what I gathered when I spoke to her Feb 1. On March 1 she also meets with a Pulmonary doctor, Dr. Sanders, at least that's who I think we are suppose to see Dr. C can't find that doctor and has been trying to get ahold of him. Dr. C, Kris and I spoke about Rylee's breathing when she is sleeping. She tends to retract and on average 3-5 times a night just quite breathing all together so we hear her constantly take a great big deep breath. So Dr. C wanted to talk to Dr. Sanders about this issue before we came up (the cardiac doctor referred us to Dr. Sanders) so he will be well aware of what he is up against when we get there and possibly start her on CPAP before this appointment. So far, I haven't heard anything from Dr. C so I guess we'll wait until the appointment on the 1st. March 1st may bring new tubes to Rylee. I am quite nerves about this appointment. Rather sick to my stomach, sit and cry nerves. I fear for her. I know her weight isn't going to be great, she hasn't been eating well and is definitely not sleeping very well. Sleeping has been quite the issue the last few nights. The last 3 nights, I think she has average about 18 waking times each night. It's been ridiculous. It also doesn't help that I have been having awful migraines and she has made me want to slam my head through a brick wall. Kris and I are at our wits end. Kristopher hasn't even slept in our bed for 2 nights because he has been sleeping out in the chair in the living room with her. Between her and Weston, we don't get much rest!
As you can tell, our lives are busy. We have a little man who keeps us entertained with his quirky little stories and statements, a baby boy that we are trying to push along to crawl and laugh and a Princess that we are pushing and praying will walk some day soon. I promise new picture soon!
Monday, January 10, 2011
Birthday party count down!
Our nephew Noah turned 3 on Saturday and had a bowling birthday party. His party was at a bowling alley in Fitchburg so me, Kris, Troy and Weston made the trek. Rylee can not go into crowds due to those bad germs that everyone carries so she got to spend sometime with Grandpa Harley and Grandma Deb. This birthday party was Troy's first time bowling. He had a lot of fun. The hardest parts for him were watching Noah open all his Thomas the train gifts and leaving. Leaving somewhere is always hard for us. Troy never wants to leave, doesn't matter where we are. Apparently at the Klauer Christmas, Kristopher had to deal with a HUGE temper tantrum from Troy when it was time to leave. He was NOT happy to go, I guess. Anyway, Troy kept asking why it wasn't his birthday party, where was his birthday party....it's THIS Saturday. I am excited. We are going to have fun. We're going to have cake (Troy has requested cars on his cake), food and games. This party is for Troy and Rylee and Weston! Troy's 3rd birthday, Rylee's 2nd and Weston's Baptism. Weston's godparents are Kristopher's brother Nicholas and one of my best friends, Andrea. We decided to adopt a Marine unit in Nicholas' honor because Nick is a Marine and has spent time away from home. So we adopted a unit of 20 men who miss home. They want and need essentials and things to keep them entertained. We enlisted the help of our guests in bringing a thing or two to send to these guys. I am excited to see what we collect for them. I just got all the plates, silverware, napkins, streamers, etc. essentials for a party. Our party is a little different than most in that it will be equipped with antibacterial wipes and hand sanitizer. We have to keep our babes healthy, which has been a struggle thus far. We are tired of sucking out boogie plugs and dealing with bloody noses. We started off the year by having 2 doctors appointments. In 2010, we drove over 7500 miles back and forth to the 109 doctor appointments. On average, the doctor appointments cost $130-$140 each, so we cost about $15000 for just doctor appointments which does not include the 3 shunt surgeries, 6 MRIs, 8 days in the PICU, 19 days in the NICU, ambulance ride, delivery of a baby! 2010 started off with at the time AWFUL news, I was pregnant for the 6th time in my life, 7 months later, we had Weston and I can't imagine life without those chubby legs and that gorgeous smile! My maternity leave was the busiest, worst time of my life. I never wish that on anyone. I am glad 2010 is over. Kris and I have been dealt some pretty shitty cards. I keep thinking that things can't get much worse and sometimes I am surprised when they do. It's the little things that drive me nuts like a shredded tire or stupid insurance crap. That is why in 2011, I am going to be a rock. I am going to be that do it all mom that I need to be and let things roll. My step brother Rob (who fell 2 stories to the ground while roofing in July 2008, leaving his spinal cord completely severed and now paralyzed from the waist down) has been having some issues lately. His mom has been worried about him (mainly because he lives 4 hours away and she's not right there to hold his hand and keep an eye on him) and sometimes I think that worrying gets to him a little. He's extremely strong willed person and he's so lucky to have that support system. I am trying to accept that I don't have that and I will admit, sometimes it bothers me, sometimes I long for that, sometimes I need to just get it all out. Don't get me wrong, I have a great family but I sometimes get the feeling that all I do is talk about Rylee's problems and appointments so that's why they never call anymore. In 2011, I am not going to constantly talk about Rylee's issues and I am going to try my hardest to let go of the longing for that support system that Rob has and I don't and I am going to do it all. I started this blog to keep my family and friends updated about Rylee after we brought her home. On January 29th, against many odds, she will be 2. I was told twice that she was in critical condition and might not make it through the night and I did it alone then. Today she was running her fingers through my hair, blowing in my face and laughing with me as we jumped around the room. Therefore, the blog posts, like they have been lately, will probably be few and far between. I have my best friend and rock, Kristopher. With him, I'll be fine. I will do it all, with a smile on my face and hopefully by the end of the year, my mommy of 3 body is fit and toned. By the end of the year, I will be physically, mentally, financially and emotionally healthier.
Saturday, January 1, 2011
Happy New Years!
I am taking a break from the Rose Bowl, however, due to the noises Kristopher is making, I am pretty sure it's still bad!
Kristopher and I have New Years Resolutions this year. We are get fit (like everyone else in America!), be better parents and love one another more. This may sound funny, but we want to run a marathon. Big goal! I think if we can run a 5k and live through it, we're doing good! I want to get fit. Lose a couple pounds and fine tone this ol' mommy of 3 body of mine. I want to be a better me. We got a christmas card during the holiday season from my aunt and uncle who wrote, "you're my guiding light". I am flattered by that. I often hear, you're super mom, you're a do it all mom. I do do it all but in 2011 I am going to do it all with a smile of my face and let those little things roll. (SIDENOTE: I just looked over at Rylee, who is all decked out in her Badger cheerleading outfit, who was standing up playing with a toy in the rocking chair! Scary and awesome at the same time! And by the way, purple Horned Toads, I mean Frogs, is a stupid mascot! Just sayin'!)
Christmas (GOGOGOGOGO, awww! Sorry, I can't help multitasking! I am a mom of 3, I can type and watch football at the same time right?!) was great. Santa Claus, for unknown reasons, came to our house. He dropped of a train set for Troy and a kitchen all decked out for Rylee. Troy got a bike and Rylee got a tricycle. They are spoiled. Troy was a turd. I kept telling him Santa Claus wasn't coming or he was coming back to pick up the toys, didn't faze Troy. He continued on and on. By Monday, I was glad I had to go back to work! What Santa Claus didn't take into consideration when picking out those toys was the mess all those little pieces make. And what a nuisance it is to constantly put a train back together again.
We're having Weston baptized on January 16th. Then a big party for him, Rylee's 2nd birthday and Troy's 3rd birthday. One BIG party! It should be fun!
Colds are heavily invading our home. Wes can't seem to shake his. Rylee has the yuckiest nose ever! The snow around here, up until Thursday, was absolutely unnecessary! Needless to say, we are ready for spring!! Extremely ready for spring. These kids need to run of their energy. Hopefully by spring, we have to 4 runners and a roller in this house.
(Oh my, the Badgers are down by 8 with 2:34 left in the game....I have got to go do something else!....oh oh oh...TOUCHDOWN! Oh I can't even handle this! 2 points away...holy moly)
Kristopher and I have New Years Resolutions this year. We are get fit (like everyone else in America!), be better parents and love one another more. This may sound funny, but we want to run a marathon. Big goal! I think if we can run a 5k and live through it, we're doing good! I want to get fit. Lose a couple pounds and fine tone this ol' mommy of 3 body of mine. I want to be a better me. We got a christmas card during the holiday season from my aunt and uncle who wrote, "you're my guiding light". I am flattered by that. I often hear, you're super mom, you're a do it all mom. I do do it all but in 2011 I am going to do it all with a smile of my face and let those little things roll. (SIDENOTE: I just looked over at Rylee, who is all decked out in her Badger cheerleading outfit, who was standing up playing with a toy in the rocking chair! Scary and awesome at the same time! And by the way, purple Horned Toads, I mean Frogs, is a stupid mascot! Just sayin'!)
Christmas (GOGOGOGOGO, awww! Sorry, I can't help multitasking! I am a mom of 3, I can type and watch football at the same time right?!) was great. Santa Claus, for unknown reasons, came to our house. He dropped of a train set for Troy and a kitchen all decked out for Rylee. Troy got a bike and Rylee got a tricycle. They are spoiled. Troy was a turd. I kept telling him Santa Claus wasn't coming or he was coming back to pick up the toys, didn't faze Troy. He continued on and on. By Monday, I was glad I had to go back to work! What Santa Claus didn't take into consideration when picking out those toys was the mess all those little pieces make. And what a nuisance it is to constantly put a train back together again.
We're having Weston baptized on January 16th. Then a big party for him, Rylee's 2nd birthday and Troy's 3rd birthday. One BIG party! It should be fun!
Colds are heavily invading our home. Wes can't seem to shake his. Rylee has the yuckiest nose ever! The snow around here, up until Thursday, was absolutely unnecessary! Needless to say, we are ready for spring!! Extremely ready for spring. These kids need to run of their energy. Hopefully by spring, we have to 4 runners and a roller in this house.
(Oh my, the Badgers are down by 8 with 2:34 left in the game....I have got to go do something else!....oh oh oh...TOUCHDOWN! Oh I can't even handle this! 2 points away...holy moly)
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