Rylee had her upper endoscopy done and all the biopsies were normal. I can't even tell you how disappointed we were that we didn't find anything. I had hoped for something to just pop up that we could easily fix, all problems solved and Rylee would grow to be a 5' 5" well proportioned, curvy lady. But everything was normal.
She got her hearing aids. They're baby pink with pink glittery ear molds. They are 100% girl. She keeps them in. She helps remind me when we forget to take them out at bedtime. She keeps asking "what's that?" "SOUND"! She hasn't realized that even though she hears everything louder, that she doesn't need to talk to loud!
We also had a visit with Genetics. Kris and I both accompanied Rylee to this appointment. Dr. Giampetro said that at this time there are no contradictions as to growth hormone therapy. However, he strongly suggested that we weigh the decision on the possible outcomes. We got a strong vibe from him that he wouldn't recommend it. I did a little research on GHT and he may be right. It all comes down to that my hope of 5' 5" is never going to happen for her (or me!). She will never be average height or weight. Unique sent me a leaflet of Rylee's exact chromosome deletion that related to 39 people. Rylee fits right in with most of them. Though, she had the birth weigh of at least half of the smallest baby of those 39, she still has many of the same characteristics. Rylee's deletion is one of a kind. None of those 39 people have exactly what she has. The deletions of those 39 are usually larger. Rylee's deletion is included in those 39's larger ones. I read that leaflet a couple of times. I now have a new hope for Rylee. 5' 5" is considerably unrealistic. There were some of those 39 that are now adults. That are living normal lives, socializing, going to college, dating, marrying. That is my hope for Rylee. College, rent, grades, friends, driving. Driving will be more difficult for her but I hope she gets the opportunity to do it.
I know that Rylee is here with us to make a difference in this world. She's going to change lives. She's going to be so amazing. She has came too far, overcame too many obstacles to not be amazing. I have hope for her. I hope her personality never changes. I hope the kids are welcoming and not cruel in school. I hope she will be all she can be. I hope she will live a fulfilling, wonderful, life changing life. And I am excited to be in her corner, her #1 fan, her cheerleader. She sure has changed my life, I owe it to her!
Monday, July 9, 2012
Monday, June 11, 2012
UPDATES and pictures
Hey all,
I know I have been MIA for a long time. We've been doing a lot lately. So by request, (and because I am home with strep and it's quiet naptime...) here's a much needed update on our family!
Mom and Dad (aka...me and Kris)
We've been doing very well. Last week, we celebrated our 6 year anniversary. I can't believe how much our lives have changed in the last 6 years. Oh how naive we were then. Up until that point our only bump in the road was the miscarriage of our first pregnancy. Don't get me wrong, it's was hard to swallow but we both see now that we were no where ready to be parents at that time. It was an eye opener for sure. Now fast forward 6 years....we're still having fun and full of love for one another. We celebrated our anniversary with our beloved Brewers. Just me and him. We got to hold each others hand instead of our 3 pairs of little hands. We had fun, just the 2 of us. We don't take enough time for us. We were starting to forget that we can have a conversation that didn't get interrupted or was about our 3 loves. We discussed them plenty on our trip and missed them dearly. I can't even stomach the thought of us in 15 to 20 years when our 3 kids are growing up, making their dreams come true, being a little naughty...and it's just me and Kris, what in the world will we do?! Right now these rare times of "us time" is super rare and super special.
I am battling with strep, sinuses and eczema. I have a very mild case of eczema on my neck, ear and ear canal. This morning I had to have my plugged ear flushed of pus and gunk from eczema gone bad. It hurts and irritating. My throat is raw and my head is full. This is the 4th time that I have had sinus infection and strep throat together in the last 6 months. It keeps coming back. I want it gone and stay gone! I am really tired of buying new toothbrushes!
Troy Thomas
He's is doing very well. He's very sensative. Dad just left for work and Troy was very sad, with crocodile tears and all when he left. Troy's vision is doing very well. He is down to 20/40 in his left eye. This means that if something, God forbid, happens to his right eye, he can legally drive unrestricted. Score! He is greedy for knowledge right now. He loves to do work books, educational computer games and writing. He holds the pencil funny but no matter how much we correct him, he still holds it wrong. Hopefully, Mrs. O can help out with that in 4K next year.
Weston Robert
He had surgery on February 20th to straighten both of his eyes. And it worked...for a while. He continues to favor his right eye over his left. I am not exactly sure at this time what that means for the future but right now he has glasses and wears a patch over his right eye for 2 hours a day. He growing well. I am just smitten over this little boy. I absolutely adore his giggle. He keeps it locked in pretty tight but when it comes out, it's so darn cute! He's right on cue for his size for his age. He loves to be outside! He loves to color and "write" (at the mercy of whatever he can get some ink on...ie his legs, arms, my Kindle cover, important papers, every page in a book, the couch...)! Knock on wood, he has yet to color on the walls like his brother preferred! His speech is very sparse. Almost non-existent so Bto3 maybe coming back to the Klauer household for him! Just KrisAnn! We went on a weekend vacation with Kris's family the first weekend in May. We ending up making a very impromptu trip to the ER after Weston's forehead kissed the hearth on the fireplace. They glued him up, got us some antibiotics for a stray ear infection and sent us back to the Lodge.
Rylee Marie...this one is last because it's the longest, as usual!
Rylee had surgery on February 20th as well, but just to have tubes placed to drain fluid on her ears and hopefully curing her conductive hearing loss that she had been having. Those tubes drained the fluid but did absolutely nothing for the hearing loss. Late May, she was diagnosed with mild to moderate Conductive Hearing loss. The ENT doctor and audiologist are a bit confused as to why she has conductive instead of a nerve type of hearing loss because it's more common for preemies to have the nerve form. 99% of the time, tubes cures conductive hearing loss when there is fluid present on the ears. Well she is the 1% exception. There are tests that we could do to maybe determine what is causing this which starts with a CT scan. She has had a lot of radiation in her short little life so we decided to not pursue the test and move forward. There would be no immediate outcome of the CT scan and nothing we could do with the knowledge right now anyway. Therefore, we are going pursuing hearing aids. If later in her life, she wants to explore this issue, she can decide that then. We ordered a very nice pair of baby pink hearing aids with light pink glittery ear molds. She can not have bone anchored hearing aids because her bones aren't strong enough yet. But mainly because she has a shunt tubing running down behind her left ear right where the aid would go and on the right side she had staph, MRSA, very close to where the aid would be. So she has pretty pink digital aids. We are very very hopefully that these hearing aids will help tremendously with her speech. Fingers crossed.
Rylee finished school on May 30th. It was the hardest decision to make to send her 4 days a week for 3 hours to a school that is 10 minutes from Dad and 30 minutes from me but we did. And it was the best decision we have ever made! She has blossomed so much. Her speech has taken off. Though still get a lot of jibberish but we can usually justify what she is trying to tell us. Her pretend play is out of this world. She loves to have tea parties. God help her brothers! Within 2 weeks of starting school, Cheri (her teacher) started potty training her at school and we did it at home too. 2 days...job done! Night and day. She very rarely has accidents and is great at telling she has to go potty. She originally had 11 goals set in her IEP to accomplish over the course of 32 school weeks. I am so proud to say that after 14 weeks, she has mastered 4 of those goals, is progressing in 6 and 1 is still emerging. She prefers to play with adults over the other 4 kids in her class. It's something that we can't really help her with much at home because she loves to play with her brothers.
Now onto the biggest, hardest subject...her growth. Last week, we learned that Rylee has pretty much stopped growing. She gained 2 oz and grew 2 cm to her length in 6 months. This is pretty much the difference of the weight of her panties and the placement of her body during measuring her length. We are not taking any drastic measures, like growth hormone therapy, right now. GHT isn't ruled out by a long shot, but on hold for right now. The main reason being, that the Endocrine doctor and any other doctors for that matter, doesn't know if this is safe for her due to her chromosomal abnormality because so little is known about it. She will be having an upper endoscopy next Monday to take lots of biopsies of her esophagus, stomach and small intestine. During our GI/Failure to Thrive appointment last week, we met with our regular doctor, Dr. Cathy who suggested that we do the Endoscopy. Rylee and I met the doctor who will do the procedure and who is all the head of the Failure to Thrive clinic. He and Cathy both agree that this is the last test we can do. After that, we "leave it in God's hands". Our goal for Rylee from the time we knew she would be coming into this world way too early and before we knew exactly what we were up against, was to give her the most fulfilling life we possibly can for as long as we had her. Unfortunately for Rylee, she can't live a fulfilling life at 22 pounds and 32 inches. She can't use the bathroom on her own, can't play on the playground like other kids, can't ride a bike, can't run or jump. We will do a feeding tube when it deemed necessary and life or death. We want her to be as independent as she possibly can.
The Endocrinologist suggested that we take a look at magicfoundation.org as research option into lives of other families of children with growth issues. I came across Russell Silver Syndrome. I called Dr. C to see what he thought of this. Still waiting to hear back from him. Russell Silver Syndrome is a form of dwarfism. Rylee fits a lot of the physical anomalies but where she is off is the affected chromosome. She has an abnormality in Chromosome 6 and none of the people with Russell Silver Syndrome have problems a Chromosome 6 issue. But no really has anything wrong with their chromosome 6, that's why we are grasping at straws. We are visiting Genetics in 2 weeks to do a follow up and I fully intend to bring this up!
Naptime is over and my kids are screaming to go outside! Enjoy all!
I know I have been MIA for a long time. We've been doing a lot lately. So by request, (and because I am home with strep and it's quiet naptime...) here's a much needed update on our family!
Mom and Dad (aka...me and Kris)
We've been doing very well. Last week, we celebrated our 6 year anniversary. I can't believe how much our lives have changed in the last 6 years. Oh how naive we were then. Up until that point our only bump in the road was the miscarriage of our first pregnancy. Don't get me wrong, it's was hard to swallow but we both see now that we were no where ready to be parents at that time. It was an eye opener for sure. Now fast forward 6 years....we're still having fun and full of love for one another. We celebrated our anniversary with our beloved Brewers. Just me and him. We got to hold each others hand instead of our 3 pairs of little hands. We had fun, just the 2 of us. We don't take enough time for us. We were starting to forget that we can have a conversation that didn't get interrupted or was about our 3 loves. We discussed them plenty on our trip and missed them dearly. I can't even stomach the thought of us in 15 to 20 years when our 3 kids are growing up, making their dreams come true, being a little naughty...and it's just me and Kris, what in the world will we do?! Right now these rare times of "us time" is super rare and super special.I am battling with strep, sinuses and eczema. I have a very mild case of eczema on my neck, ear and ear canal. This morning I had to have my plugged ear flushed of pus and gunk from eczema gone bad. It hurts and irritating. My throat is raw and my head is full. This is the 4th time that I have had sinus infection and strep throat together in the last 6 months. It keeps coming back. I want it gone and stay gone! I am really tired of buying new toothbrushes!
Troy Thomas
He's is doing very well. He's very sensative. Dad just left for work and Troy was very sad, with crocodile tears and all when he left. Troy's vision is doing very well. He is down to 20/40 in his left eye. This means that if something, God forbid, happens to his right eye, he can legally drive unrestricted. Score! He is greedy for knowledge right now. He loves to do work books, educational computer games and writing. He holds the pencil funny but no matter how much we correct him, he still holds it wrong. Hopefully, Mrs. O can help out with that in 4K next year.
Weston Robert
He had surgery on February 20th to straighten both of his eyes. And it worked...for a while. He continues to favor his right eye over his left. I am not exactly sure at this time what that means for the future but right now he has glasses and wears a patch over his right eye for 2 hours a day. He growing well. I am just smitten over this little boy. I absolutely adore his giggle. He keeps it locked in pretty tight but when it comes out, it's so darn cute! He's right on cue for his size for his age. He loves to be outside! He loves to color and "write" (at the mercy of whatever he can get some ink on...ie his legs, arms, my Kindle cover, important papers, every page in a book, the couch...)! Knock on wood, he has yet to color on the walls like his brother preferred! His speech is very sparse. Almost non-existent so Bto3 maybe coming back to the Klauer household for him! Just KrisAnn! We went on a weekend vacation with Kris's family the first weekend in May. We ending up making a very impromptu trip to the ER after Weston's forehead kissed the hearth on the fireplace. They glued him up, got us some antibiotics for a stray ear infection and sent us back to the Lodge.Rylee Marie...this one is last because it's the longest, as usual!
Rylee had surgery on February 20th as well, but just to have tubes placed to drain fluid on her ears and hopefully curing her conductive hearing loss that she had been having. Those tubes drained the fluid but did absolutely nothing for the hearing loss. Late May, she was diagnosed with mild to moderate Conductive Hearing loss. The ENT doctor and audiologist are a bit confused as to why she has conductive instead of a nerve type of hearing loss because it's more common for preemies to have the nerve form. 99% of the time, tubes cures conductive hearing loss when there is fluid present on the ears. Well she is the 1% exception. There are tests that we could do to maybe determine what is causing this which starts with a CT scan. She has had a lot of radiation in her short little life so we decided to not pursue the test and move forward. There would be no immediate outcome of the CT scan and nothing we could do with the knowledge right now anyway. Therefore, we are going pursuing hearing aids. If later in her life, she wants to explore this issue, she can decide that then. We ordered a very nice pair of baby pink hearing aids with light pink glittery ear molds. She can not have bone anchored hearing aids because her bones aren't strong enough yet. But mainly because she has a shunt tubing running down behind her left ear right where the aid would go and on the right side she had staph, MRSA, very close to where the aid would be. So she has pretty pink digital aids. We are very very hopefully that these hearing aids will help tremendously with her speech. Fingers crossed.
Rylee finished school on May 30th. It was the hardest decision to make to send her 4 days a week for 3 hours to a school that is 10 minutes from Dad and 30 minutes from me but we did. And it was the best decision we have ever made! She has blossomed so much. Her speech has taken off. Though still get a lot of jibberish but we can usually justify what she is trying to tell us. Her pretend play is out of this world. She loves to have tea parties. God help her brothers! Within 2 weeks of starting school, Cheri (her teacher) started potty training her at school and we did it at home too. 2 days...job done! Night and day. She very rarely has accidents and is great at telling she has to go potty. She originally had 11 goals set in her IEP to accomplish over the course of 32 school weeks. I am so proud to say that after 14 weeks, she has mastered 4 of those goals, is progressing in 6 and 1 is still emerging. She prefers to play with adults over the other 4 kids in her class. It's something that we can't really help her with much at home because she loves to play with her brothers.
Now onto the biggest, hardest subject...her growth. Last week, we learned that Rylee has pretty much stopped growing. She gained 2 oz and grew 2 cm to her length in 6 months. This is pretty much the difference of the weight of her panties and the placement of her body during measuring her length. We are not taking any drastic measures, like growth hormone therapy, right now. GHT isn't ruled out by a long shot, but on hold for right now. The main reason being, that the Endocrine doctor and any other doctors for that matter, doesn't know if this is safe for her due to her chromosomal abnormality because so little is known about it. She will be having an upper endoscopy next Monday to take lots of biopsies of her esophagus, stomach and small intestine. During our GI/Failure to Thrive appointment last week, we met with our regular doctor, Dr. Cathy who suggested that we do the Endoscopy. Rylee and I met the doctor who will do the procedure and who is all the head of the Failure to Thrive clinic. He and Cathy both agree that this is the last test we can do. After that, we "leave it in God's hands". Our goal for Rylee from the time we knew she would be coming into this world way too early and before we knew exactly what we were up against, was to give her the most fulfilling life we possibly can for as long as we had her. Unfortunately for Rylee, she can't live a fulfilling life at 22 pounds and 32 inches. She can't use the bathroom on her own, can't play on the playground like other kids, can't ride a bike, can't run or jump. We will do a feeding tube when it deemed necessary and life or death. We want her to be as independent as she possibly can.
The Endocrinologist suggested that we take a look at magicfoundation.org as research option into lives of other families of children with growth issues. I came across Russell Silver Syndrome. I called Dr. C to see what he thought of this. Still waiting to hear back from him. Russell Silver Syndrome is a form of dwarfism. Rylee fits a lot of the physical anomalies but where she is off is the affected chromosome. She has an abnormality in Chromosome 6 and none of the people with Russell Silver Syndrome have problems a Chromosome 6 issue. But no really has anything wrong with their chromosome 6, that's why we are grasping at straws. We are visiting Genetics in 2 weeks to do a follow up and I fully intend to bring this up!
Tuesday, March 6, 2012
Sometimes you just need a good cry!
****Post written on January 31, 2012 that was never posted! Opps!****
I wanted to update this bloggy thing and anyone who reads it, about Weston's color changing feet. All of the tests have come back normal. The doc thinks it could be Raynaud's disease. It doesn't appear that he has any rheumatic disease which rules out Raynaud's Syndrome. I guess it's not much to worry about. There is no cure. There is no treatment. Just keep the poor kid bundled up! He's been doing fairly well. He is sleeping better at night, most nights!
The pending big birthday of Rylee's has been keeping up busy! When a child who receives Birth to 3 services turns 3, they age out of the program. Rylee is significantly delayed in a many areas and is definitely in need of continued therapy. So we had to turn to school. She went to all of the testing for OT, PT, speech and early childhood. Most of them overlapped. It seemed that for 3 weeks straight we were running her to school or someone was coming to our house to visit her or us. On January 25th, we had a meeting with the school and a ton of others to discuss the results of all the testing and makes some decisions of what to do next. So my dad and Kris' mom came with to support me (Kristopher had to work and couldn't come) along with Tammy, our Birth to 3 program coordinator, to meet with the school psychologist, school speech therapist, OT from Cesa, PT from Cesa, the Early Childhood coordinator and the Early Childhood speech. It was a full table. There was lots of facts thrown around. I thought I was ready to hear what they had to say. I know, and always have, that Rylee is "special". She has severe delays and there is no denying that. But I will never get used to hearing people that I had just meet 5 minutes earlier tell me how far behind she is. It was rough. I made it through. And in the end, I ended up signing consent for Rylee to go to Early Childhood 4 days a week for 3 hours a day and 1 - 30 minute home visit per month. The school is in Hazel Green so we have to transport her there and back. I am honestly not very fond of the fact that she will be so far from either Kris or I. But it was what had to be done. I really liked the Early Childhood teacher and think it was what was best for Rylee because ultimately our goal for her is to live the best life we can give her. I held strong through the whole she's at the 1%, "very poor", "below average", definite need for services, 20 pages of goals without a single tear. Once I got in my car to go and get the boys, I bawled. I cried all the way to Platteville to the daycare. I can't say that I felt better but sometimes you just need a good cry!
4 days after that meeting, Rylee turned 3! She didn't really want to I don't think. She didn't want presents or us to sing to her or a card that Grandma had sent. She did however, want cake! And yesterday, our very new 3 year old went to her first day of school. She had a few tears when the teacher asked her to stop playing to join in circle time but otherwise it went alright. Today, she had a suspected seizure. I am not convinced that it was or wasn't. She hasn't had one in 8 months. She was probably daydreaming or just spacing. We'll take it more seriously if it happens again.Next month is a very busy one for us.
Feb 6 Uncle Scott's BirthdayFeb 7 Weston has his pre-op eye visits at UW Station clinic
Feb 9 Rylee has her 3 year well child visit and Weston has his 18 month well child visit
Feb 14 Rylee has a visit with AFCH Audiology and her ENT doc to follow up on her hearing issues
Feb 19 Troy and Rylee's birthday parties!
Feb 20 Weston has eye surgery at AFCH
Feb 23 Rylee has a GI visit, MRI and Neurosurgery visit at AFCH
Feb 24 Uncle Craig's birthday
Feb 25 Aunt Carmen's birthday
Feb 27 Rylee visits with Urology and Neurology at AFCH and UW
Lots and Lots of trips to Madison. I can't say that I am looking forward to it, but we need some straight eyes and check ups to makes sure everything is functioning properly. Sorry if I am absent for the entire month of February.
I am working on reading 50 books in 2012. I am currently on book #6 so since it is extremely quiet in my house, I am going to take advantage and read a little before Daddy gets home from work! Good night all!
Wednesday, January 4, 2012
Hello 2012!
Hi All! I took an un-intentional blogging hiatus. I have, as always, been busy...being a mom...since my last post on October 10th! SORRY! Lots has happened around our household like...Halloween, Thanksgiving, Christmas, 4th Birthday, New Years....and a few doctors visits. I say few and I sincerely mean there were only a few! Rylee hasn't been to the doctor for herself for almost a month! KNOCK ON WOOD!!!!!!
So here's a quick (I hope) recap of the last almost 3 months....
I don't Weston was quite walking yet in my last post, but he is now. It's fun. He's progressing well. We seen the eye doctor about his crossing eyes on October 1 and we got him some glasses. It was an honest to God battle to get him to keep those puppies on. December 10th we went back to the eye doctor. The glasses, surprise surprise, didn't work which the eye doctor didn't really think they would. SO...February 20th, we are headed to UW-AFCH for an outpatient surgery to uncross those gorgeous eyes. Hopefully, he does well with this. I actually took him up to meet and consult with the eye doctor on December 22. It just so happened that the night before we went up, he woke me up right before Daddy came home from work and the poor babe was covered in huge hives. So before our eye appt in Madison, we rushed him in to the clinic at home. They thought it was probably just a virus. Holy cow, I found out it definitely was a virus when we were on our way to Madison and he completely blew out his diaper with diarrhea. Thank goodness we packed extra clothes. At the appt, which took 4 and half hours (about 99% was waiting!), he went through all the wipes and diapers and clothes I had. Poor boy! The diarrhea is still around today. The cause...teething and virus. Christmas Day night we were getting ready to head over to my sister's house for Christmas there and while getting him dressed, Daddy noticed his feet and hands were very purple. We still don't have a diagnosis for it yet. Yesterday, we did an echocardiogram which came back normal. When I got home tonight, there was a message on the machine from the doctors office to give them a call for more test results. Hopefully we can figure it out. It's the weirdest thing really. His feet and hands will be pink one moment, purple the next and back to pink as fast as it took you to read this. He's reverted back to have restless nights. Monday night, Daddy slept with him in the recliner and last night he spun circles in our bed with us. Right now, Weston has been our biggest concern.
Rylee has been doing fantastic! She's been the healthiest one so far this winter. I hope that statement doesn't come back to bite me. I haven't spoken that out loud with the fear that she'll end up terribly sick! She thoroughly enjoyed Christmas. She got a dollhouse from Santa. She loves it! She loves it so much sometimes she wakes at wee hours of the morning to play with it for a little while before going back to bed. Makes mommy and Daddy wish there wasn't a dollhouse...between these little play sessions and all the little pieces that are scattered thoroughout our house, I don't know which worse! With her 3rd birthday just around the corner, Birth to 3 is ending. Friday is her very last day of OT. PT ends on the 19th and Speech ends on the 27th. We are sad to see these ladies leave and terrified as to what is next. I signed the consent form for the testing for early childhood last week. The school speech teacher is extremely nice and gave a very thorough tour of Benton school. She even took us to the library and let Rylee pick out a couple books to take home. I have a sneaking feeling that Rylee will end up at Southwestern since Benton doesn't have an early childhood program. I would prefer that she went to Platteville for Early childhood because it's a better school for it. They don't open enroll for children with disabilities from what I understand so that;s not an option. The biggest fear that I have with her going to Southwestern is that Daddy is 10-15 minutes away and I am 40 minutes away so if something happened, a seizure, vomit, knock of the noggin...we can't be there right away if she was at Benton school, which we can see from our house or in Platteville which is down the street from my job. It worries me. We also don't plan to live in a teeny tiny money pit forever and will relocate to Platteville. Right now, it's out of our hands, we just have to roll with it I guess but for the record, I am not too thrilled about it!
Troy is ball of fun. Up until a week ago, we had the biggest problem of him wetting his pants. He pretty much started wetting his pants, once he started school. "School" is only for 2 hours every Friday. So it's not much of school and he loves it so I have been having a hard time thinking that school is the reason for wetting of the pants, but everything kind of points to that as a major change. We tried everything, ignoring it, babying it, getting mad about it, punishing for it, making him help us clean it up...nothing worked. For Christmas last year, we were gifted Elf on the shelf. This year we broke out Elf on the shelf, which Troy names Thomas, and he hung around our house until Christmas eve when Santa came and took him back to the North Pole with him. Santa sent Troy (and Weston and Rylee) a video about what Thomas had reported to him each night. Santa told Troy that he needed to work better on making it to the potty in time. That floored Troy, he didn't realize Thomas was telling Santa that. We also made a big deal about turning 4. That turning 4 meant that he would be very big boy because he would get to go to school, have more responsibilities...that when your 4 you no longer pee your pants. I don't know if it was the 4 thing or Santa thing or 2 week break from School but he's hasn't had an accident since Christmas. Friday, he goes back to school, so I guess we'll know if it is school, if he starts having accidents again. Fingers crossed that phase it behind us. He's an exceptionally little boy. He loves numbers (he gets that from me!) and likes to do circumstancial math...like there are 4 people and 4 cookies, how many cookies does each person get...1! He loves that kind of stuff. He loves being 4. A month ago he told me that he didn't want to be 4, he wanted to be 3 forever. 4 warmed up on him and now he's an adorable 4 year old.
Me and Kristopher have been pulling our hair out with 3 kids, but aren't balled yet! We don't get to spend very much time with each other so when we do, it's extra special. Now that the holidays are over, it's back to seeing each other on pretty much only Sundays. There are many nights, like tonight, when I need to keep myself busy otherwise the loneliness creeps in and I miss him terribly. I talk to adults all day and kids all night, but most days I long to have a conversation that doesn't involve money and interest rates or juice boxes and poop. I long for a joke or laugh or a snuggle with someone who is bigger than me.
Here are a few pictures of life at our house in the last few months (sorry most of them are from my phone...)
Until next time...
Mary
So here's a quick (I hope) recap of the last almost 3 months....
I don't Weston was quite walking yet in my last post, but he is now. It's fun. He's progressing well. We seen the eye doctor about his crossing eyes on October 1 and we got him some glasses. It was an honest to God battle to get him to keep those puppies on. December 10th we went back to the eye doctor. The glasses, surprise surprise, didn't work which the eye doctor didn't really think they would. SO...February 20th, we are headed to UW-AFCH for an outpatient surgery to uncross those gorgeous eyes. Hopefully, he does well with this. I actually took him up to meet and consult with the eye doctor on December 22. It just so happened that the night before we went up, he woke me up right before Daddy came home from work and the poor babe was covered in huge hives. So before our eye appt in Madison, we rushed him in to the clinic at home. They thought it was probably just a virus. Holy cow, I found out it definitely was a virus when we were on our way to Madison and he completely blew out his diaper with diarrhea. Thank goodness we packed extra clothes. At the appt, which took 4 and half hours (about 99% was waiting!), he went through all the wipes and diapers and clothes I had. Poor boy! The diarrhea is still around today. The cause...teething and virus. Christmas Day night we were getting ready to head over to my sister's house for Christmas there and while getting him dressed, Daddy noticed his feet and hands were very purple. We still don't have a diagnosis for it yet. Yesterday, we did an echocardiogram which came back normal. When I got home tonight, there was a message on the machine from the doctors office to give them a call for more test results. Hopefully we can figure it out. It's the weirdest thing really. His feet and hands will be pink one moment, purple the next and back to pink as fast as it took you to read this. He's reverted back to have restless nights. Monday night, Daddy slept with him in the recliner and last night he spun circles in our bed with us. Right now, Weston has been our biggest concern.
Rylee has been doing fantastic! She's been the healthiest one so far this winter. I hope that statement doesn't come back to bite me. I haven't spoken that out loud with the fear that she'll end up terribly sick! She thoroughly enjoyed Christmas. She got a dollhouse from Santa. She loves it! She loves it so much sometimes she wakes at wee hours of the morning to play with it for a little while before going back to bed. Makes mommy and Daddy wish there wasn't a dollhouse...between these little play sessions and all the little pieces that are scattered thoroughout our house, I don't know which worse! With her 3rd birthday just around the corner, Birth to 3 is ending. Friday is her very last day of OT. PT ends on the 19th and Speech ends on the 27th. We are sad to see these ladies leave and terrified as to what is next. I signed the consent form for the testing for early childhood last week. The school speech teacher is extremely nice and gave a very thorough tour of Benton school. She even took us to the library and let Rylee pick out a couple books to take home. I have a sneaking feeling that Rylee will end up at Southwestern since Benton doesn't have an early childhood program. I would prefer that she went to Platteville for Early childhood because it's a better school for it. They don't open enroll for children with disabilities from what I understand so that;s not an option. The biggest fear that I have with her going to Southwestern is that Daddy is 10-15 minutes away and I am 40 minutes away so if something happened, a seizure, vomit, knock of the noggin...we can't be there right away if she was at Benton school, which we can see from our house or in Platteville which is down the street from my job. It worries me. We also don't plan to live in a teeny tiny money pit forever and will relocate to Platteville. Right now, it's out of our hands, we just have to roll with it I guess but for the record, I am not too thrilled about it!
Troy is ball of fun. Up until a week ago, we had the biggest problem of him wetting his pants. He pretty much started wetting his pants, once he started school. "School" is only for 2 hours every Friday. So it's not much of school and he loves it so I have been having a hard time thinking that school is the reason for wetting of the pants, but everything kind of points to that as a major change. We tried everything, ignoring it, babying it, getting mad about it, punishing for it, making him help us clean it up...nothing worked. For Christmas last year, we were gifted Elf on the shelf. This year we broke out Elf on the shelf, which Troy names Thomas, and he hung around our house until Christmas eve when Santa came and took him back to the North Pole with him. Santa sent Troy (and Weston and Rylee) a video about what Thomas had reported to him each night. Santa told Troy that he needed to work better on making it to the potty in time. That floored Troy, he didn't realize Thomas was telling Santa that. We also made a big deal about turning 4. That turning 4 meant that he would be very big boy because he would get to go to school, have more responsibilities...that when your 4 you no longer pee your pants. I don't know if it was the 4 thing or Santa thing or 2 week break from School but he's hasn't had an accident since Christmas. Friday, he goes back to school, so I guess we'll know if it is school, if he starts having accidents again. Fingers crossed that phase it behind us. He's an exceptionally little boy. He loves numbers (he gets that from me!) and likes to do circumstancial math...like there are 4 people and 4 cookies, how many cookies does each person get...1! He loves that kind of stuff. He loves being 4. A month ago he told me that he didn't want to be 4, he wanted to be 3 forever. 4 warmed up on him and now he's an adorable 4 year old.
Me and Kristopher have been pulling our hair out with 3 kids, but aren't balled yet! We don't get to spend very much time with each other so when we do, it's extra special. Now that the holidays are over, it's back to seeing each other on pretty much only Sundays. There are many nights, like tonight, when I need to keep myself busy otherwise the loneliness creeps in and I miss him terribly. I talk to adults all day and kids all night, but most days I long to have a conversation that doesn't involve money and interest rates or juice boxes and poop. I long for a joke or laugh or a snuggle with someone who is bigger than me.
Here are a few pictures of life at our house in the last few months (sorry most of them are from my phone...)
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| Kris and I with our godson, Gabriel |
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| Weston's first hair cut! |
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| Halloween 2011 |
Dr. Troy Klauer, MD
Rylee Klauer, RN
Patient Weston R Klauer DOB 8/2/2010
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| Christmas Eve, in PJs ready for the lights at Murphy Park |
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| Happy 4th Birthday! |
Until next time...
Mary
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!
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