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.
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