That Isaac's trend of "kissing me all over" (cheek, cheek, ear, ear, chin, nose, eye, eye, eyebrow, eyebrow, head, head, head) though it took about a year reprieve, has been back healthily for quite some time now.
I love that Isaac's trend caught on to Ruby, though her routine is different: cheek, cheek, ear, ear, chin, nose, head, ponytail, ponytail-holder. Maybe she does eyes, too...man, I need to pay better attention.
Just recently, Jadelyn caught on with her own version. Today's was cheek, "'nother cheek", head, cheek, cheek, head. Or something.
I tell them that I get paid in hugs and kisses. For a long time I was broke. Now I'm wealthy. Love those crazies. Easier to say when they're sleeping sweetly and not talking above each other the.whole.lunch. =) Oh, speaking of lunch! Looked across the table today and found Ruby crossing her eyes with her lips pursed together sticking WAY out. Man, I wished I had a camera. Cracks me up. Like her self-portraits do. Ha!
I love that Isaac wanted to help me cut felts by picking up all the scraps today. Ruby and Jadelyn helped me yesterday, but he was unable to due to his refusal to eat, and therefore his stationary existence at the table. =P We talked about how he was helping me, Ms. Angel, and Jesus. Later, I heard him singing "I'm a little helper, a helper, a helper, oh, I'm a little helper for Jesus!" That boy seriously has such a sweet singing voice. Ruby? She sang "Silent Night" for Grandma when we were down in Florida last week, and I was cracking up. It's such a raspy, cracking, strained sound. But man, does she ever sing with ALL her heart. =)
I love that lately when I practice piano, I am often flanked by two little girls.
Side note: Care coordinator e-mailed me last night. Dr. Walker was still in clinic, and care coordinator needed to leave and is off today. So hopefully we'll hear something by Monday. I'm happy that I know not to expect to learn anything today. Communication, people. It's a lovely thing. And I no longer feel like biting anyone's head off. Preventative communication, I would like to call it. =P Though I do wonder why, after telling us that the plan is to put Ruby in a cast for 6 months, no follow-up appointment or appointment for casting was made. Strange. We'll likely be going for a second opinion at Cincinnati Children's Hospital. The director of orthopaedic surgery there is interested in pediatric hip disorders AND neuromuscular disorders. Would LOVE to get in to see him - he might just know better how to treat my sweetie-patitie.
Next side note: Ruby left the water running slightly after washing her hands before she went to bed. I should go turn that off. Crazy girl.
Friday, November 18, 2011
Thursday, November 17, 2011
I AM SO FRUSTRATED!!!!!!!
I am frustrated beyond belief about the run-around and lack of communication from Shriners after being told that they plan to put Ruby in a cast for 6 months. We have concerns (which of course I think are quite valid), shared them, and now have waited a week with NO ANSWERS. The care coordinator told us yesterday that Dr. Walker hasn't responded to the e-mail and that the care coordinator would get a hard copy of the e-mail to Dr. Walker today. In today's e-mail, she told me that Dr. Walker has been very busy today (isn't she always?) and that the care coordinator "suspects" the Dr. Walker will REVIEW the e-mail at the end of the day. When can we expect a response? In a year? Good grief. Why won't they just clear up the confusion and get on with the best plan of action? Ruby ain't gettin' any younger, and this problem should've been fixed YEARS ago. Add to this the fact that I found a 30 page or so report last night from some Dr.'s at Mayo Clinic about CMT and hip subluxation and how often this problem happens in CMT kids and how it may be a bad idea for a CMT kid to be put in a cast because it "may exacerbate hip weakness". But when we bring up the possibility of CMT playing a role in Ruby's hip subluxation to the Dr.'s they blow us off. Mama Bear is out in full force and I'm having a hard time calming down so I can be civil when they do decide that it's important enough to get back with us. Everything I read says this problem should be fixed by age 5, and Ruby will be 5 in 25 days. STOP PUTTING US OFF!!!!! ARRRRGGGGGHHHHHHHHH!!!!!!!!! I think I need to scream. But the kids are sleeping. So I shouldn't do that. Maybe I should go iron. =/
You know you're kinda lame when....
you crave quiet, alone time so you can iron. Really. When that's your hobby, you've got to wonder about yourself. Well, I crave that time. Funny thing is, is that laundry and ironing are like my two favorite chores. I don't like actually DOING the laundry, but folding it is great. And I keep up on that. But ironing? Because it's my favorite, I put it off as like a "reward" for getting my other chores done, and it somehow gets pushed to the end of my to-do list, which explains the laundry basket full of clothes needing to be ironed that has been a permanent fixture in our bedroom for the past oh, 7 months or so. I need a hobby. =P
Ruby was a bit random this morning - going off talking about things without saying what in the world she was talking about. This was a bit concerning - normally anyone can follow the child. Add this to the fact that the last two mornings she has reported that she feels like she is going to throw up, hasn't really been eating heartily, and says that she feels weak. =P Talked to David about it and he said "maybe she has a UTI". Well, she started acting more normally later, so I didn't worry too much about it. Hope she's okay!
Isaac...that fella. He stood at the table for 5 hours this morning because he didn't want to eat his food. He finally finished it. FINALLY. Wowzers. I think I'd have given in and just eaten the stuff quicker. Stubborn stamina that fella has. And so I have to, too. For if I didn't, he wouldn't have eaten, and he would've thrown up by now from hunger. AHHHHH!!!!!
Soon after leaving my Grandma's house on Sabbath, Jadelyn informed us in the van, "I not goofy. I two." (She likes to say "I two" while holding up one finger. Adorable.) Pucka had been calling her goofy, and I guess that just perturbed her. Ha! As much as she loves Pucka and talks about him, she doesn't really want him anywhere near her. My poor father. =)
And if we let kids name things and be in charge of grammar rules, things would make more sense in the English language. Cases in point? "Teethbrush" - courtesy of Jadelyn, and the oft-repeated "gooder" instead of "better", courtesy of the older two. Had to throw this in just to be random myself, you know. Huh...maybe I have a UTI. ;) Love you, David!
Ruby was a bit random this morning - going off talking about things without saying what in the world she was talking about. This was a bit concerning - normally anyone can follow the child. Add this to the fact that the last two mornings she has reported that she feels like she is going to throw up, hasn't really been eating heartily, and says that she feels weak. =P Talked to David about it and he said "maybe she has a UTI". Well, she started acting more normally later, so I didn't worry too much about it. Hope she's okay!
Isaac...that fella. He stood at the table for 5 hours this morning because he didn't want to eat his food. He finally finished it. FINALLY. Wowzers. I think I'd have given in and just eaten the stuff quicker. Stubborn stamina that fella has. And so I have to, too. For if I didn't, he wouldn't have eaten, and he would've thrown up by now from hunger. AHHHHH!!!!!
Soon after leaving my Grandma's house on Sabbath, Jadelyn informed us in the van, "I not goofy. I two." (She likes to say "I two" while holding up one finger. Adorable.) Pucka had been calling her goofy, and I guess that just perturbed her. Ha! As much as she loves Pucka and talks about him, she doesn't really want him anywhere near her. My poor father. =)
And if we let kids name things and be in charge of grammar rules, things would make more sense in the English language. Cases in point? "Teethbrush" - courtesy of Jadelyn, and the oft-repeated "gooder" instead of "better", courtesy of the older two. Had to throw this in just to be random myself, you know. Huh...maybe I have a UTI. ;) Love you, David!
Tuesday, November 15, 2011
Huh....
Well, we have heard nothing back from Shriners after asking our questions about the plan of putting Ruby in a cast for 6 months. I sense a pattern - tell parents scary things and then leave them dangling. =P Well, we're planning on Ruby having to be in a cast for some time - whether it's the 6 months with no surgery or the 6 weeks following surgery, so today during our Wal-Mart trip, we bought big underwear to cut and affix velcro to so that it will fit over her cast. Got home and realized that won't work. So, we'll have to buy material and make it fit like a diaper like my smart mother-in-law brainstormed. Next up will be pants/skirts that will fit over the cast and then to make some chairs that Ruby will be able to sit in and such. Trying to make this seem like an adventure of sorts to the kids instead of the dreadful mess that it is. Hope I can keep it up. And hope it gets done soon. If she gets her cast on next week (yeah, not likely), she won't be out of it until almost June. And then it's HOT and SWIMMIN' weather, folks. And this gal loves to swim. We were at a hotel on our way back from Grandma's house on Sabbath night, and that gal went right from the hot tub to literally jumping in the pool. She has SUCH a sense of adventure and craziness. I love it. Though I don't share it. =O
It was nice to see Grandma, but sad, too. She sleeps a lot of the day, and doesn't seem to feel like talking much. She's still crocheting 2 hand towels a day, and still working on her crossword puzzles, but she's getting so very weak. I don't understand at all how she can do what she does on just a tiny bit of apple juice and a few bites of ice cream a day. That lady is simply amazing. I am so very blessed to have her as my Grandma. The strength! Wow. Ruby especially seemed to enjoy being with Grandma - standing by her chair, talking and showing her paintings over and over and over, and Grandma? She was a grand sport. Though she wasn't all about the kids pulling all the toys out of the toy box at once. Ooops. =O Ruby and Isaac both seemed to really enjoy their time with their great-aunts and uncles. All cuddle-buggy they were! =) When we were getting ready to leave, Uncle Skosh told me something about how I was the rock for my family, as it's hereditary. I don't know if I can EVER posses the strength and grace of Grandma. I sure love her, and wish she didn't have to go through all this. When I told her that, Grandma said that we all have to at some time and told me that there are "better days ahead", which seemed to be in reference to heaven. Oh, to take the pain out of it, though, 'eh?
Huh...sure seems like there is more to say, but yeah, that's what I get for not writing down any notes. =P
It was nice to see Grandma, but sad, too. She sleeps a lot of the day, and doesn't seem to feel like talking much. She's still crocheting 2 hand towels a day, and still working on her crossword puzzles, but she's getting so very weak. I don't understand at all how she can do what she does on just a tiny bit of apple juice and a few bites of ice cream a day. That lady is simply amazing. I am so very blessed to have her as my Grandma. The strength! Wow. Ruby especially seemed to enjoy being with Grandma - standing by her chair, talking and showing her paintings over and over and over, and Grandma? She was a grand sport. Though she wasn't all about the kids pulling all the toys out of the toy box at once. Ooops. =O Ruby and Isaac both seemed to really enjoy their time with their great-aunts and uncles. All cuddle-buggy they were! =) When we were getting ready to leave, Uncle Skosh told me something about how I was the rock for my family, as it's hereditary. I don't know if I can EVER posses the strength and grace of Grandma. I sure love her, and wish she didn't have to go through all this. When I told her that, Grandma said that we all have to at some time and told me that there are "better days ahead", which seemed to be in reference to heaven. Oh, to take the pain out of it, though, 'eh?
Huh...sure seems like there is more to say, but yeah, that's what I get for not writing down any notes. =P
Wednesday, November 9, 2011
Ruby
Ruby, out of the blue: "Now guys, yesterday when you put me on Mouthbound, nobody told me I could get off, but I started talking". (something to that effect).
David: "Do you think I'm a priest?"
Ruby: "Yes".
Okay, then! =)
Heard back from Shriners today that Dr. Walker has decided on a plan of care for Ruby. 6 months in a cast. We have some concerns/questions about this, so put those in to the care coordinator, who should be talking to the doctor tomorrow, so guess we'll find out for sure then what the final plan is. This could be a long, LONG haul.
David: "Do you think I'm a priest?"
Ruby: "Yes".
Okay, then! =)
Heard back from Shriners today that Dr. Walker has decided on a plan of care for Ruby. 6 months in a cast. We have some concerns/questions about this, so put those in to the care coordinator, who should be talking to the doctor tomorrow, so guess we'll find out for sure then what the final plan is. This could be a long, LONG haul.
Monday, November 7, 2011
Oh, boy...I'm really getting bad at blogging!
Last week, while I was finishing reclaiming the strawberry patch from the weeds, Isaac was playing in the same strawberry patch when he began to go crazy, grabbing at his head like a madman and screaming about the nearby bee. Took me way longer than it should have to realize that he got stung. Took me even LONGER to find the actual sting site so I could put baking powder paste on it. It was right by his ear, and it swelled up nicely. Sorry, buddy!
While at the table one day during lunch, I glanced over at Jadelyn to see a "fish cracker" stuck partially up her nose. That child!
Overheard Ruby "reading" the other day. Not sure what the story was about, but it included this lovely tidbit, "you're wrong. I'm right. Stop the arguing!" Niiiicee, Rubes!
My children bite their fingers on accident while eating WAY MORE than would be expected. One day after Isaac had his accidental crunch-down and was crying due to the pain, Ruby piped in, "do you want me to bite my finger for you?" For you see, when one of the girls gets hurt, Isaac will often do whatever hurt them so that they feel better (maybe because they're not alone in their pain?) At least Ruby was willing to reciprocate the favor, though I believe Isaac turned her offer down. Much to the relief of Ruby's fingers, I'm sure. =P
One day, there was an all out jacket-pulling war amongst my kids. I believe that Jadelyn pulled Isaac and Ruby's jackets and Isaac pulled Jadelyn's jacket. Ruby informed me later that she was going to pull Jadelyn's jacket, too, but then Jesus told her not to do that, and she listened. Another time, Isaac wanted my old watch with the watchband no longer on it, but he couldn't find it. Well, while he was in a "break" on his bed, Ruby found it. She was going to play with it, but then she thought that she should give it to Isaac, who wanted it first. So under the bedroom door it was slid. I sure hope that the times she listens to Jesus increase!
Isaac had a crazy neck outbreak this past week. It started as a scratch at the base of his neck. None of us know where it came from. It then grew into a rash around the scratch, then into a bigger rash with bumps. David was getting mighty worried and wanted me to take I-see to the doctor. Being the stubborn person I am, I told David they wouldn't be able to do anything for it, anyways. I put on zinc oxide, but had to wash it off soon afterward, as it was spreading to other things in the house. =O I replaced it with charcoal, covered with gauze. My tape job left much to be desired, so I put on more tape, then packing tape over the gauze, hoping that would hold it on better. No such luck. So after an hour or two, that had to be removed, and it left behind some nice trails of charcoal on his neck. Ooops. The next thing we tried was hydrocortizone cream, and that seemed to work. He still has a rash, but it's much improving, thanks to David's repeated applications of hydrocortizone cream. Thanks, Buddy!
David was mowing with Jadelyn on his lap yesterday, when he saw her leg jerking along like crazy. He stopped. Her sock was shredded in one place and her leg was slightly scratched up from the barbed wire they were mowing by. David felt so bad, but was so happy it wasn't worse. Good thing she was wearing her thickest socks!
My Grandma isn't doing so well. She's down to like 100 pounds, is walking with a four-pronged cane, and is no longer able to complete her crossword puzzles, though Mom does report that Grandma is pulling some pranks. =) Well, with David's survey finally over, we are heading down there tomorrow. We'll get there on Wednesday and get to stay until Sabbath after lunch. I'm looking forward to seeing Grandma, but a bit afraid. I just don't do well with sickness and death. I hate to see Grandma doing so poorly when I'm so used to a healthy, active, vibrant lady. I'm so thankful that very soon we won't have to deal with sickness and death ANYMORE. Now, to get my kids over their colds so they can visit with Grandma, too. =P
Ruby had her neurologist appointment today. The Dr. thinks there is likely some neurological condition contributing to Ruby's hip problems, I think. At one point, he said that maybe we should look at getting the surgery done instead of the casting, because she could likely regress after the casting if there IS a neurological issue underlying the hip problem. But then when David and I tried to clarify this, he started backpedaling some, saying that he is a neurologist, NOT an orthopedist. I know that. I just wanted his input. Rats. Anyhow, he wanted some labs done. Ruby cried a little bit because she didn't want to have her blood drawn. I let her "draw" my blood a couple times, and I "drew" her blood a couple times, and then off we went to the lab. We had a bit of a wait, but then when we went in, Ruby had just the slightest whimper when the needle went in, and then she sat perfectly still while they drew 6-7(?) vials of blood. I was SO PROUD of her! She normally screams BLOODY MURDER when getting a shot, or even sometimes when Isaac and Jadelyn are getting shots, so this was a LOVELY surprise. She wanted to go up some more stairs and to some ramp that Isaac found, and I told her if she was still, we would do it after she was done. (I hadn't even mentioned not screaming.) Well, when it was all said and done, she nearly passed out once we got to the hall, but after laying down with her feet propped up and drinking some juice and eating some cake, she perked up and was off to the promised adventures. I was so proud of her! Isaac seemed quite concerned about Ruby. He sure loves that gal. He has said that if she has to have a cast, he will push her in her stroller, and I believe he will. Love how attentive he can be to her!
Well, if we are to really leave home right after breakfast tomorrow, I need to get packing. Off to the races! =P
While at the table one day during lunch, I glanced over at Jadelyn to see a "fish cracker" stuck partially up her nose. That child!
Overheard Ruby "reading" the other day. Not sure what the story was about, but it included this lovely tidbit, "you're wrong. I'm right. Stop the arguing!" Niiiicee, Rubes!
My children bite their fingers on accident while eating WAY MORE than would be expected. One day after Isaac had his accidental crunch-down and was crying due to the pain, Ruby piped in, "do you want me to bite my finger for you?" For you see, when one of the girls gets hurt, Isaac will often do whatever hurt them so that they feel better (maybe because they're not alone in their pain?) At least Ruby was willing to reciprocate the favor, though I believe Isaac turned her offer down. Much to the relief of Ruby's fingers, I'm sure. =P
One day, there was an all out jacket-pulling war amongst my kids. I believe that Jadelyn pulled Isaac and Ruby's jackets and Isaac pulled Jadelyn's jacket. Ruby informed me later that she was going to pull Jadelyn's jacket, too, but then Jesus told her not to do that, and she listened. Another time, Isaac wanted my old watch with the watchband no longer on it, but he couldn't find it. Well, while he was in a "break" on his bed, Ruby found it. She was going to play with it, but then she thought that she should give it to Isaac, who wanted it first. So under the bedroom door it was slid. I sure hope that the times she listens to Jesus increase!
Isaac had a crazy neck outbreak this past week. It started as a scratch at the base of his neck. None of us know where it came from. It then grew into a rash around the scratch, then into a bigger rash with bumps. David was getting mighty worried and wanted me to take I-see to the doctor. Being the stubborn person I am, I told David they wouldn't be able to do anything for it, anyways. I put on zinc oxide, but had to wash it off soon afterward, as it was spreading to other things in the house. =O I replaced it with charcoal, covered with gauze. My tape job left much to be desired, so I put on more tape, then packing tape over the gauze, hoping that would hold it on better. No such luck. So after an hour or two, that had to be removed, and it left behind some nice trails of charcoal on his neck. Ooops. The next thing we tried was hydrocortizone cream, and that seemed to work. He still has a rash, but it's much improving, thanks to David's repeated applications of hydrocortizone cream. Thanks, Buddy!
David was mowing with Jadelyn on his lap yesterday, when he saw her leg jerking along like crazy. He stopped. Her sock was shredded in one place and her leg was slightly scratched up from the barbed wire they were mowing by. David felt so bad, but was so happy it wasn't worse. Good thing she was wearing her thickest socks!
My Grandma isn't doing so well. She's down to like 100 pounds, is walking with a four-pronged cane, and is no longer able to complete her crossword puzzles, though Mom does report that Grandma is pulling some pranks. =) Well, with David's survey finally over, we are heading down there tomorrow. We'll get there on Wednesday and get to stay until Sabbath after lunch. I'm looking forward to seeing Grandma, but a bit afraid. I just don't do well with sickness and death. I hate to see Grandma doing so poorly when I'm so used to a healthy, active, vibrant lady. I'm so thankful that very soon we won't have to deal with sickness and death ANYMORE. Now, to get my kids over their colds so they can visit with Grandma, too. =P
Ruby had her neurologist appointment today. The Dr. thinks there is likely some neurological condition contributing to Ruby's hip problems, I think. At one point, he said that maybe we should look at getting the surgery done instead of the casting, because she could likely regress after the casting if there IS a neurological issue underlying the hip problem. But then when David and I tried to clarify this, he started backpedaling some, saying that he is a neurologist, NOT an orthopedist. I know that. I just wanted his input. Rats. Anyhow, he wanted some labs done. Ruby cried a little bit because she didn't want to have her blood drawn. I let her "draw" my blood a couple times, and I "drew" her blood a couple times, and then off we went to the lab. We had a bit of a wait, but then when we went in, Ruby had just the slightest whimper when the needle went in, and then she sat perfectly still while they drew 6-7(?) vials of blood. I was SO PROUD of her! She normally screams BLOODY MURDER when getting a shot, or even sometimes when Isaac and Jadelyn are getting shots, so this was a LOVELY surprise. She wanted to go up some more stairs and to some ramp that Isaac found, and I told her if she was still, we would do it after she was done. (I hadn't even mentioned not screaming.) Well, when it was all said and done, she nearly passed out once we got to the hall, but after laying down with her feet propped up and drinking some juice and eating some cake, she perked up and was off to the promised adventures. I was so proud of her! Isaac seemed quite concerned about Ruby. He sure loves that gal. He has said that if she has to have a cast, he will push her in her stroller, and I believe he will. Love how attentive he can be to her!
Well, if we are to really leave home right after breakfast tomorrow, I need to get packing. Off to the races! =P
Tuesday, November 1, 2011
Single-Moming It
So, today I was a "single-Mom" until about half an hour before bedtime. The kids behavior was fine, but my poor little fella threw up 5 times. Thankfully 2 of those times was outside, and he went over to the woods before up-chucking. 2 of the times he made it in the bowl, and the other one? All over the living room floor. Yuck. David is SO the puke cleaner-upper, but I managed to survive. Without throwing-up myself, though I did have to look away and bury my nose in my shirt several times. Why was this a day that David couldn't be home more? Stinkin' survey. =P And then, as I was enjoying my naptime peace, it was cut very short. Ruby and Isaac woke up and were partying by like 3pm. I know, I shouldn't complain, since my almost 5 year-olds are still such good nappers. I'm not ready for the next phase of parenthood - "the no naptime phase". YIKES! I really have no idea how single parents do it. I'm just emotionally drained by like 5:30pm, and my brain is screaming, "BACK-UP, PLEASE!!!!" Even if the kids have been good. Crazy.
And to end, a quote from my Isaac, "I have a blender in my belly. It blends my food up gooder". I love that little guy - puke and all. May this sickness not last for weeks and weeks and weeks like it did 2 years ago. =O
And to end, a quote from my Isaac, "I have a blender in my belly. It blends my food up gooder". I love that little guy - puke and all. May this sickness not last for weeks and weeks and weeks like it did 2 years ago. =O
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