Since Hayden was a baby, he's had issues with milk. As an infant, he was on Nutramigen formula. When he was one, we tried milk again along with Pediasure. That was a 2 year dramatic fail. We went to Peptamin Jr. Once again, we tried a milk-based formula. That was the boost. Nope. It caused him problems. Now, Hayden is on Elecare formula. I think he's going to end up stuck here. To make it worse, GI is saying to just 100% milk/soy free since he appears to just not be able to process the proteins. It wrecks havok on his system. From gut pain to bowel problems to sinus reactions and irritating his asthma, he just can't handle it. It's been said that he couldn't handle the proteins before. It was just thought that, since he was an infant/toddler, he would outgrow it. Well, at 6.5, I guess he's not.
I've talked to him about it and explained how we are going to have to take away alot of the foods he likes. Boy, I don't think I quite got how difficult that would be. Tonight, we went grocery shopping. I read label after label after label. Thank God WalMart clearly prints which foods have what allergens in bold letters. A few other companies do, too. Some don't. It was hard. Hard in the fact that some of the ingredients were not written in languages spoken on this planet. Hard cause some foods that you wouldn't expect to have milk did. Did you know that frozen veggies have milk?! Yeah, seriously... they do. Aisle after aisle, shelf after shelf, foods were just ticked off this list. *sigh* It looks like Hayden is restricted to a few meats, raw veggies and fruit. Even canned tuna has milk. Fruit pops have milk, pretty much all frozen dinners were out. Most cereals are no-nos. Even iinstant oatmeal and pop tarts are out. What is he supposed to eat?
I'm determined to find things for him to still enjoy. I will sit back and force my son to only eat cardboard or drink dirt for the rest of his life. I will find recipes for soy free, milk free, dairy free, easy-to-chew, casein free foods. Until then, I will take small peace in finding a "candy bar" that was gluten free, soy free, dairy free, taste free chocolate that he liked. I think he was just desperate lol. We will also have to make sure that this is part of his school plan at the meetings in August. The school will have to provide him dairy/soy/casein free meals. We will also need to find away to send his formula to school and it to be served. I also think it's time that I start procrastinating and get a medical alert bracelet. Besides all his other issues, dairy/soy allergy will definitely need to be on there. I am just so thankful he doesn't have other food allergies *knock on wood*
Friday, July 29, 2011
Tuesday, July 19, 2011
2 for you, none for me
It's that time of year...again. The school supply lists are out. It's time for us parents to put down the fun of summer and fight each other at the local walmart for that last pack of 10 cent pencils. As I walked through the aisles of walmart a few days ago, I couldn't help but to start feeling the stress. I don't even HAVE my kids' lists. Yet, as I walked past the completely empty aisles of supplies snatched up as if the educational apocolypse was upon us, I couldn't stop my heart from beginning to race, adrenaline pumping and the fear of being that parent who's kids show up unprepared. Today, though, is not like yester-year when Mom knew exactly what was needed without any stinkin' list.
Now, it's truly a treasure hunt. Teachers have gotten to be extremely OCD with what these kids show up with. To make it worse, they, now, don't want the kids showing up on uneven grounds. Noooo. They want everyone to be the same. The teachers specificy that Little Johnny can't have the coolest Transformer pencils, and Suzie Q can't have that hot pink trapper keeper. Nope. Not at all. The thing that used to be so fun about back-to-school supply shopping is now gone. Now, it's not fair for Johnny to have those cool pencils when his classmate's mom chose to buy him plain yellow. Suzie can't have that hot pink Trapper Keeper because most of the other kids are going to have plain folders. Nevermind that Suzie Q will probably be well dressed anyways so she'll still be set apart. Not to mention, kids aren't getting picked on for having uncool pencils. The powers that be, though, truly think these stupid mandates are going to help. So, we get the supply list. Ok, fine. Well, that wasn't good enough. See, parents still had this idea in their heads that, since they are the ones buying supplies for their child, they would buy what they wanted. 12 pencils? Ok, 12 Princess pencils. Gotcha. Or "12 pencils? That's too many. Here's 6." Once again, the kids are not on even ground. So teachers put out lists to parents BUT take the supplies and dump them into one big community bucket for the class. You send little Sarah in with 12 pencils but Becky came in with 3. Well, now both girls have 7 pencils. That's fair, right? Well, wait. Sarah's mom paid for SARAH to have 12. Sarah's mom isn't responsible for Becky. That's up to Becky's parents. Many parents don't care for this. So schools do it a bit more sneaky now. They simply just don't tell the parents that it's all being shared. Imagine my surprise when I bought every single item on Kaitlyn's list for Kindergarten, yes all special stuff, just to have her come home from school crying cause they were taken from her.
Now, the way I see it, why should supplies be pooled? Supplies are always on sale at the end of the summer for 10-50 cents apiece. If Becky's mom isn't willing to take $5 to the store and get her kid supplies, why is that my problem? What's next? Are we going to pool the classroom's wardrobe? Why not? It would be more fair, right?
To add to it, these teachers get crazy specific about what is needed.
something like this. I wasn't making it up about the 36 pencils. That's really on their lists. Crazy, right? What do you do with all these supplies, teachers?! *sigh* Since we are trying to teach our kids to follow the rules, we have to set an example. So, yes, I'll buy 12 36 pencils. I'll get you your damn 36 glue sticks. But I will tell you this. Beggars can not be choosers. I am not getting your dry erase markers or clorox wipes and your hand sanitizer will be the bobo brand. I will get a pencil box that is an 8x6. Clorox wipes will be paper towels and 409 spray. Since I have ONE child in your class, I will buy ONE art smock. I may seem trivial to you but I count these as small victories. I also wish you much patience as you will have to deal with me all year long, baby. Yes, I am THAT mom. I love being THAT mom. When this year is over, I will be THAT mom that still makes you grind your teeth at 2am all summer. I am a stay-at-home mom, lady. I have nothing better to do. Remember, I went through the school system. I'll take all of my past issues out on you and let me warn you, I was also THAT child that got away with everything in school. I know how far I can push it. And I hope those kids don't have you in a corner stoning you with all 36 pencils that EACH of them just had to have. You enjoy the rest of your summer cause, come day 1 of school, it's game on, lady.
Now, it's truly a treasure hunt. Teachers have gotten to be extremely OCD with what these kids show up with. To make it worse, they, now, don't want the kids showing up on uneven grounds. Noooo. They want everyone to be the same. The teachers specificy that Little Johnny can't have the coolest Transformer pencils, and Suzie Q can't have that hot pink trapper keeper. Nope. Not at all. The thing that used to be so fun about back-to-school supply shopping is now gone. Now, it's not fair for Johnny to have those cool pencils when his classmate's mom chose to buy him plain yellow. Suzie can't have that hot pink Trapper Keeper because most of the other kids are going to have plain folders. Nevermind that Suzie Q will probably be well dressed anyways so she'll still be set apart. Not to mention, kids aren't getting picked on for having uncool pencils. The powers that be, though, truly think these stupid mandates are going to help. So, we get the supply list. Ok, fine. Well, that wasn't good enough. See, parents still had this idea in their heads that, since they are the ones buying supplies for their child, they would buy what they wanted. 12 pencils? Ok, 12 Princess pencils. Gotcha. Or "12 pencils? That's too many. Here's 6." Once again, the kids are not on even ground. So teachers put out lists to parents BUT take the supplies and dump them into one big community bucket for the class. You send little Sarah in with 12 pencils but Becky came in with 3. Well, now both girls have 7 pencils. That's fair, right? Well, wait. Sarah's mom paid for SARAH to have 12. Sarah's mom isn't responsible for Becky. That's up to Becky's parents. Many parents don't care for this. So schools do it a bit more sneaky now. They simply just don't tell the parents that it's all being shared. Imagine my surprise when I bought every single item on Kaitlyn's list for Kindergarten, yes all special stuff, just to have her come home from school crying cause they were taken from her.
Now, the way I see it, why should supplies be pooled? Supplies are always on sale at the end of the summer for 10-50 cents apiece. If Becky's mom isn't willing to take $5 to the store and get her kid supplies, why is that my problem? What's next? Are we going to pool the classroom's wardrobe? Why not? It would be more fair, right?
To add to it, these teachers get crazy specific about what is needed.
- 36 #2 pencils(cause we are going to feed them to the trash monster)
- pencil box (8x5)
- 3 composition books with kinder-wide rule and half blank pages(of course I'm not going to tell you what store has these. You need to search it out)
- 36 glue sticks 3oz (they don't come in 3oz but you'll have fun searching. don't forget to get 36 of them. Yes, I want 36 sticker PER CHILD in my class cause I am going to teach them how to deactivate bombs with these)
- ziploc bags-boys bring 1 gallon, girls bring quart( I think the reason for this size difference is obvious)
- 2 boxes of 24 crayons (no, 4 boxes of 12 would not be accepted)
- bottle of hand sanitizer GermX, Purell, or Dial (if you bring me some off brand crap, I will embarass your child)
- 3 PRONG paper folders in blue, red, yellow, green and purple (yes, I know these will look like crap in a month causing you to have to replace them EVERY 2 months when they aren't on sale)
- 5 bottle of paint
- 3 art smocks
- headphones
- 3 boxes of kleenex
- 2 bottles of clorox wipes( no, not lysol. I have OCD, remember? Yeah, I know you don't buy these for your own house but you're buying them from me. You won't even notice me sneaking these home. I have a fetish)
- 4 EXPO brand black dry erase markers (only that brand. I don't feel like buying my own supplies for work so you are going to provide them for me. Keep in mind I expect gifts for Christmas, Teacher's day, and the last day of school, and it better NOT be chocolate or some crappy homemade thing. I expect gift cards!)
Thursday, July 14, 2011
Letter to a teacher
We are coming up on that time of year again, that time when all of the supply lists are sent out. The dreaded supply list. Yes, I am "that" parent, the one that doesn't conform to all of the rules and specifications of a supply list. I buy what I want for my kids or what's on sale. If my kid is the only using it, what does it matter? If the supplies are going into a class pool, which I TOTALLY disagree with, then you better be happy for what you get, Mrs. Teacher. Enjoy:
Dear Mrs. X:
In just over a week, you will be my son’s Grade 1 teacher. He is ever so excited to be under your tutelage. Why, since the last day of kindergarten, entering your class was all he could talk about. He gleefully thrust a piece of paper into my hand on that June afternoon, and said, “Here’s a list of the stuff I need for school next September!”
And I have to admit, I, too, was excited. I’m a school supplies geek from way back. And so, in early August, I set out to buy the items you’d listed.
It was on my fourth store that the realization began to sink in.
You’re a crafty b%$@ aren’t you?
This list was a thinly disguised test. Could I find the items, exactly as you’d prescribed? Because if not, my son would be That Kid, the one with the Problem Mother, Who Can’t Follow Directions.
For example, the glue sticks you requested. In the 40 gram size. Three of the little buggers. (What kind of massive, sticky project you’ve got planned for the first day of school that would require the students to bring all this glue, I cannot imagine.) But the 40 gram size doesn’t come in a convenient 3-pack. The /30 /gram size does. But clearly, those would be wildly inappropriate. So I got the individually priced 40’s, as per your instructions.
Another bit of fun was your request for 2 packs of 8 Crayola crayons (basic colors). The 24 packs, with their 24 /different /colors, sat there, on sale. I could have purchased /three/ of the 24 packs for the price I had to pay for the 8 packs. (Clearly, you’ll not be teaching the youngsters any sort of economics lessons this year.) Even the cashier looked at me, as if to say, “Pardon me, ma’am, but are you slow?” as I purchased these non-bargain crayons. But that’s what the list said. And I was committed to following the list.
But the last item, well, now, you saved your malice up for that one, didn’t you? “8 mm ruled notebooks”, you asked for. Simple enough. Except the standard size is /seven /millimetres. One. Millimetre. Difference. Do you realize, Mrs. X., exactly how infinitesimal the difference between 7 mm ruling and 8 mm ruling is? Pretty small, I assure you. The thickness of a fingernail, approximately. But that millimetre, that small bit of nothingness, made me drive to four different stores, over the course of three sweaty August hours. And when I finally, finally found the last remaining 8 mm notebooks, I took no pleasure in my victory. I merely shifted my focus. To you, Mrs. X.
You wanna dance, lady? Let’s dance.
Because I am just batsh!t crazy enough to play your games. And, in turn, come up with some of my own.
On show and share day, my son will be bringing the video of his birth. It will be labelled, “Ben’s First Puppy.” Enjoy.
He will be given a list of words, and daily, he will ask you what they mean. Words such as, “pedophile”, “anti-semite”, and “skank”. Good luck with those.
At some point, you will attempt to teach him mathematics. And I’m quite sure that, like most of your ilk, you will require my son to “show his work”. And he will.
Through interpretive dance.
Because that is who you’ve chosen to tangle with, toots. A stay at home mom who is not entirely balanced, and has altogether too much time on her hands. But is, most certainly, A Mother Who Can Follow Directions.
Sincerely,
Mom
.
Dear Mrs. X:
In just over a week, you will be my son’s Grade 1 teacher. He is ever so excited to be under your tutelage. Why, since the last day of kindergarten, entering your class was all he could talk about. He gleefully thrust a piece of paper into my hand on that June afternoon, and said, “Here’s a list of the stuff I need for school next September!”
And I have to admit, I, too, was excited. I’m a school supplies geek from way back. And so, in early August, I set out to buy the items you’d listed.
It was on my fourth store that the realization began to sink in.
You’re a crafty b%$@ aren’t you?
This list was a thinly disguised test. Could I find the items, exactly as you’d prescribed? Because if not, my son would be That Kid, the one with the Problem Mother, Who Can’t Follow Directions.
For example, the glue sticks you requested. In the 40 gram size. Three of the little buggers. (What kind of massive, sticky project you’ve got planned for the first day of school that would require the students to bring all this glue, I cannot imagine.) But the 40 gram size doesn’t come in a convenient 3-pack. The /30 /gram size does. But clearly, those would be wildly inappropriate. So I got the individually priced 40’s, as per your instructions.
Another bit of fun was your request for 2 packs of 8 Crayola crayons (basic colors). The 24 packs, with their 24 /different /colors, sat there, on sale. I could have purchased /three/ of the 24 packs for the price I had to pay for the 8 packs. (Clearly, you’ll not be teaching the youngsters any sort of economics lessons this year.) Even the cashier looked at me, as if to say, “Pardon me, ma’am, but are you slow?” as I purchased these non-bargain crayons. But that’s what the list said. And I was committed to following the list.
But the last item, well, now, you saved your malice up for that one, didn’t you? “8 mm ruled notebooks”, you asked for. Simple enough. Except the standard size is /seven /millimetres. One. Millimetre. Difference. Do you realize, Mrs. X., exactly how infinitesimal the difference between 7 mm ruling and 8 mm ruling is? Pretty small, I assure you. The thickness of a fingernail, approximately. But that millimetre, that small bit of nothingness, made me drive to four different stores, over the course of three sweaty August hours. And when I finally, finally found the last remaining 8 mm notebooks, I took no pleasure in my victory. I merely shifted my focus. To you, Mrs. X.
You wanna dance, lady? Let’s dance.
Because I am just batsh!t crazy enough to play your games. And, in turn, come up with some of my own.
On show and share day, my son will be bringing the video of his birth. It will be labelled, “Ben’s First Puppy.” Enjoy.
He will be given a list of words, and daily, he will ask you what they mean. Words such as, “pedophile”, “anti-semite”, and “skank”. Good luck with those.
At some point, you will attempt to teach him mathematics. And I’m quite sure that, like most of your ilk, you will require my son to “show his work”. And he will.
Through interpretive dance.
Because that is who you’ve chosen to tangle with, toots. A stay at home mom who is not entirely balanced, and has altogether too much time on her hands. But is, most certainly, A Mother Who Can Follow Directions.
Sincerely,
Mom
.
Monday, July 11, 2011
fun, sun, tubes and bites
Whew! Alot has happened since my last post. Sorry it has been so long. Things have just been crazy busy around here, and we have definitely been enjoying ourselves. School has come to an end! Yay! Kaitlyn finished 1st grade with awards for reading and high marks. Hayden is a kindergarten graduate, although this DoD school gave the tikes no frills about it. I wished we got the kindy graduation most people do but oh well. Now, we are rolling into summer things. Days at the pool, slip'n'slides in the backyard, popsicles and hot days with friends. We even made a trip to Busch Gardens. We met up with so old, missed friends for a day at the park. It was a rainy, wet, hot, humid, exhausting day, but fun was had by most(although I think J had fun but just won't admit it). It was Hayden's first day all outdoors in the new chair, and it worked out very well. Kaitlyn is continuing to cheer with Cheer Fusion. In the past few weeks, though, she's gone from barely doing a cartwheel to doing back walk-overs, round-offs, and it almost doing standing back handsprings without a spot. She's also become a much better flyer and is learning alot on those skills. Her coach has greatly improved her jumps, and she's making alot of new friends with her squad. Makaylah is getting in on some of the action. This is her first year cheering. She's on the Tiny team. Although she still has alot to learn on taking direction, she's enjoying it and making progress.
On the medical front, things haven't been as bright. Hayden had another GI appt back in May. He's gained back a couple of the lbs he lost but no where near enough. Hayden is now almost 6.5yrs but only weighs ~41.5lbs. That puts him barely at 20%. He's dangling. Unfortunately, it's not like Hayden goes up and down. It's been a steady down since he was a baby. Now he's heading into the "we need to intervene" land. The GI said he should be putting on 5g a day or 2lbs in 6 months. Hayden is only gaining 1g a day or 0.4lbs in 6months. Yeah, exactly. Not even coming close. This is WITH all of the formulas and counting and pushing that we've been doing. When we stop trying to force him, he actually looses weight. The G tube is on his table. This time, though, Jeremy and I aren't fighting against it anymore. There are so many things that keep Hayden from eating. If he's tired, he doesn't eat. If he's upset, he doesn't eat. If he's sick, he doesn't eat. If he's distracted, he doesn't eat. If the food feels funny in his mouth, he doesn't eat. If he had too "big" of a lunch, he won't eat. You get the idea. He is supposed to be eating 1250 calories a day. He avg. barely 500. He's not coming close. There's also a strong possibility he's still intolerant of the proteins in milk or soy or gluten. He was on special formulas in infancy for this. It has continued. That further cuts foods from his diet and leaves him a bad tasting formula to drink. Getting the G tube, though, will allow us to bypass the brain and mouth and put nurishment directly into his belly. He can also be fed while he sleeps. We can also keep him hydrated much easier. It will still allow him to do all of the activities he enjoys and eat what he wants/can eat. Jeremy and I have already signed the consent forms. We are just waiting for a few formalities to be done.
Makaylah has also been continuing on her path. She continues to have repeated episodes of hypoglycemia. She's been deemed prediabetic. We are no longer allowed to let her go more than 8hrs tops without food or sugar. That means we have to wake her in the middle of the night for sugar. She has to eat all day (to her enjoyment) to make sure her body has enough glucose. From what we are being told, it's only a matter of time. I truly hope and pray she can live out most of her childhood before it turns into Type I.
Right now, Hayden is looking like something out of an alien movie. Despite bathing the kids in Off brand spray, they were a great feast for mosquitos a couple of evenings ago. Kaitlyn got just a few bites. Makaylah got a few more. Hayden was the main course with over 20 swollen, red, hot-to-the-touch welts all over him. We are giving him benedryl and motrin around the clock to try and reduce it.
Hayden's supplies are delivered to us by a company called EdgePark medical Supplies. Over the past few months, I have let them take over more and more of his supplies. This is has been a Godsend. We are now not short of supplies. No more begging for scraps from the pharmacies or clinics. No more constant washing and reusing beyond sanitation protocol or expiration dates. This has been great.
Well, I need to run off to stop the [loud] shinanagins the kids are getting into and the dog isn't going to bathe himself. Hopefully, I'll get back over here before the summer ends ;)
On the medical front, things haven't been as bright. Hayden had another GI appt back in May. He's gained back a couple of the lbs he lost but no where near enough. Hayden is now almost 6.5yrs but only weighs ~41.5lbs. That puts him barely at 20%. He's dangling. Unfortunately, it's not like Hayden goes up and down. It's been a steady down since he was a baby. Now he's heading into the "we need to intervene" land. The GI said he should be putting on 5g a day or 2lbs in 6 months. Hayden is only gaining 1g a day or 0.4lbs in 6months. Yeah, exactly. Not even coming close. This is WITH all of the formulas and counting and pushing that we've been doing. When we stop trying to force him, he actually looses weight. The G tube is on his table. This time, though, Jeremy and I aren't fighting against it anymore. There are so many things that keep Hayden from eating. If he's tired, he doesn't eat. If he's upset, he doesn't eat. If he's sick, he doesn't eat. If he's distracted, he doesn't eat. If the food feels funny in his mouth, he doesn't eat. If he had too "big" of a lunch, he won't eat. You get the idea. He is supposed to be eating 1250 calories a day. He avg. barely 500. He's not coming close. There's also a strong possibility he's still intolerant of the proteins in milk or soy or gluten. He was on special formulas in infancy for this. It has continued. That further cuts foods from his diet and leaves him a bad tasting formula to drink. Getting the G tube, though, will allow us to bypass the brain and mouth and put nurishment directly into his belly. He can also be fed while he sleeps. We can also keep him hydrated much easier. It will still allow him to do all of the activities he enjoys and eat what he wants/can eat. Jeremy and I have already signed the consent forms. We are just waiting for a few formalities to be done.
Makaylah has also been continuing on her path. She continues to have repeated episodes of hypoglycemia. She's been deemed prediabetic. We are no longer allowed to let her go more than 8hrs tops without food or sugar. That means we have to wake her in the middle of the night for sugar. She has to eat all day (to her enjoyment) to make sure her body has enough glucose. From what we are being told, it's only a matter of time. I truly hope and pray she can live out most of her childhood before it turns into Type I.
Right now, Hayden is looking like something out of an alien movie. Despite bathing the kids in Off brand spray, they were a great feast for mosquitos a couple of evenings ago. Kaitlyn got just a few bites. Makaylah got a few more. Hayden was the main course with over 20 swollen, red, hot-to-the-touch welts all over him. We are giving him benedryl and motrin around the clock to try and reduce it.
Hayden's supplies are delivered to us by a company called EdgePark medical Supplies. Over the past few months, I have let them take over more and more of his supplies. This is has been a Godsend. We are now not short of supplies. No more begging for scraps from the pharmacies or clinics. No more constant washing and reusing beyond sanitation protocol or expiration dates. This has been great.
Well, I need to run off to stop the [loud] shinanagins the kids are getting into and the dog isn't going to bathe himself. Hopefully, I'll get back over here before the summer ends ;)
Monday, April 25, 2011
Summer is on the horizon
And it is much welcomed....
It has been quite awhile since I posted(again, sorry.). Things have been interesting. I don't remember if I told you guys but Hayden has been additionally dx'ed with ADHD. With that, pedi started him on a med to help him sleep better. He now takes Clonodine. It has helped ALOT. There is a notable difference from days he takes it and days he doesn't. This has truly helped him sleep at night. He falls asleep without drama and stays in bed through the night. Other things haven't been so great, though. For the past 4wks or so, he's been crazy tired. He's spending more time down than up. Oddly, he is still getting up to play. He just keeps having to take breaks. He also doesn't appear to be gaining back the weight lost. In Feb (Jan. I forget), it was discovered at his neuro check up that he'd dropped a good 3.5lbs. Now that he's 6, this puts him at barely 5%. To top it off, Tricare may cut off his formula since he's 100% oral. The website says they don't pay for oral feeds and they requested his script info from the HHC. His script list him as oral feed. We'll see.
Cheer has been going great. In fact, MaKaylah wants to do it, too. As do Hayden. We'll see if they get to jump into next season.
In a few weeks, summer will be here. I'm hoping for a good summer. I am taking the summer off from school. We are also working on a few things that we home grow to full bloom in the next several weeks. Although, so far, we aren't seeing great signs for this, we are also hoping Hayden doesn't have a bad summer as far as asthma, breathing, growing, and autonomic stuff goes.
Now for me to go give him the forgotten Clonodine....
It has been quite awhile since I posted(again, sorry.). Things have been interesting. I don't remember if I told you guys but Hayden has been additionally dx'ed with ADHD. With that, pedi started him on a med to help him sleep better. He now takes Clonodine. It has helped ALOT. There is a notable difference from days he takes it and days he doesn't. This has truly helped him sleep at night. He falls asleep without drama and stays in bed through the night. Other things haven't been so great, though. For the past 4wks or so, he's been crazy tired. He's spending more time down than up. Oddly, he is still getting up to play. He just keeps having to take breaks. He also doesn't appear to be gaining back the weight lost. In Feb (Jan. I forget), it was discovered at his neuro check up that he'd dropped a good 3.5lbs. Now that he's 6, this puts him at barely 5%. To top it off, Tricare may cut off his formula since he's 100% oral. The website says they don't pay for oral feeds and they requested his script info from the HHC. His script list him as oral feed. We'll see.
Cheer has been going great. In fact, MaKaylah wants to do it, too. As do Hayden. We'll see if they get to jump into next season.
In a few weeks, summer will be here. I'm hoping for a good summer. I am taking the summer off from school. We are also working on a few things that we home grow to full bloom in the next several weeks. Although, so far, we aren't seeing great signs for this, we are also hoping Hayden doesn't have a bad summer as far as asthma, breathing, growing, and autonomic stuff goes.
Now for me to go give him the forgotten Clonodine....
Wednesday, February 23, 2011
Fevers and Fusion
First, I want to apologize for the lack of postings. Things got interesting and hot at our house these last few weeks. For a few weeks in Jan, we were fighting the fevers from every angle. Hayden kept getting strange fevers with, seemingly, no cause. Just as quick as they would come, they would go. No ideas on them. For me, they wouldn't leave. Mid January, I was hit hard with a persistant, bad case of pnuemonia. After two oral abx and IV abx and fluids, it still took me over 2wks to kick it. I had fevers over 104. It was scary and sucked major. Then, to make it worse, my potassium, vit D, vit C, iron, and hemoglobin/crit levels all fell in the toilet. Wanna talk about feeling absolutely like blah... I'm better now but still trying to catch back up with all of the missed school. Most of my professors are being good about it. The other one I'm reporting, but that's another story.
Kaitlyn has gone to another cheer squad. We left the hot mess that was at her school and found an all star cheer squad. All Star Cheerleading is year-round and doesn't cheer at sport events. They go to competitions in various locations. Kaitlyn is loving this! The girls on her squad are so nice. They are all older or much older than her but they treat her well. Her squad is mostly 11-13yr olds with a couple 9yr olds and one 6yr old. Although she joined in the middle of the season, she has learned fast and is contributing to the squad. She had her first competition just this past Sunday. Her squad took 1st place!
She also had fun dancing with her squad before the award ceremony.
There will be many more videos and pictures to come!
Kaitlyn has gone to another cheer squad. We left the hot mess that was at her school and found an all star cheer squad. All Star Cheerleading is year-round and doesn't cheer at sport events. They go to competitions in various locations. Kaitlyn is loving this! The girls on her squad are so nice. They are all older or much older than her but they treat her well. Her squad is mostly 11-13yr olds with a couple 9yr olds and one 6yr old. Although she joined in the middle of the season, she has learned fast and is contributing to the squad. She had her first competition just this past Sunday. Her squad took 1st place!
She also had fun dancing with her squad before the award ceremony.
There will be many more videos and pictures to come!
Sunday, January 2, 2011
Forward Momentum
This is the time of year that everyone reflects on the events and changes of the previous year. 2010. 2010 was an interesting year for us. Kaitlyn moved from Kindergarten to 1st grade. Hayden moved from ESE pre-k to mainstream Kindergarten. We moved several states away. We went from Sea duty to shore duty. We've started new adventures and walked away from old ones. Lost friends, gained friends and just had an interesting year.
Hayden
Last year started out rocky for Hayden. We were dealing with alot of respiratory symptoms for him. As usual, we weren't getting alot of answers, just guesses. His GI stuff did a flip from diarrhea to constipation. Before, we couldn't get it to stay in. Now, we are looking for things to get it out. The last half of 2010 was promising, though. We saw a dramatic decrease in the respiratory crap and a bit of weight gain and growth. It wasn't much but it definitely was much appreciated. Hayden's weight still has both Jeremy and I concerned as he looks like a walking skeleton.
Not much we can do about it right now as his new GI doesn't look at HIM, just a piece of paper. This puts him at about 30 something% for weight. They are only concerned in he's below 25%, but when he turns 6, which is just a couple of months, his current weight puts him barely at about 10%.
On the other side, Hayden has made progress at school. He still struggles socially, but that has come to just be apart of life for him. He has made a couple of friends, Aiden and Tristan. Hayden even had Aiden over for an overnight. It went ok. Hayden's teacher tested his reading level. Hayden reads at the level of a 2nd grader halfway through the school year. This was at the beginning of Kindy. That's AWESOME! The downside to that, though, is that his reading comprehension was barely at Kindergarten. That, too, isn't surprising and is a common thing for Aspies. My theory is that he gets the rules of written english and that's why he can read such big words and books. He doesn't process it, though. It would be like you or me reading a manual on biophysics. We would read most of the words but not understand a lick of it. lol. Hayden also got a new chair this year (see previous posts). This chair has opened up freedom and independence for him. He can conserve energy and go far but have a bit of control over where he goes. He can't selfpropel huge distances or even around the grocery store, but he can move himself to things he wants to see. This has also opened up freedom for us. No longer must we have two pushers for outings or fill a shopping cart with children. It's like he's walking next to us. It's great!
Kaitlyn
Kaitlyn has started a few new things this year. She's cheering again and truly enjoys it. She's also done a few pageants again and has expressed the desire to continue. She has also started Girl Scouts. Kaitlyn's a Daisy. She's doing really well with this one, too. She's also made new friends at her new school. She's also been introduced to female drama at the elementary level. lol She has her best friends and kinda friends and friends she puts up with lol. Kaitlyn has also had her troubles this year. We are still working with her on her lying and her drive. Kaitlyn's reading level was tested, as well. She tested with the reading ability and comprehension of a 3rd grader the first week of 1st grade. Yet, another test, she tested as just above avg. for 1st grade. The way the test is administered, though, she can choose to quit when she wants. She quit early. *sigh* We will work on this motivation to finish problem. In 2010, she also had her first slumber party with 2 of her friends. That went great, better than expected.
MaKaylah-Ann
Well, what can I say about Ms. MaKay? She is just as sassy and loud as ever. This last year, she made huge progress with her speech. At the beginning of 2010, she had just begun speech therapy and wasn't speaking English at all. By the end of spring, she was running her mouth and using her words for good and evil. MaKaylah has also shown a love for sign language and picks that up easily. She still has problems with fluid on her ear drums which leads to occasional ear infections and misunderstanding of what's being said. We are working on that. Makaylah still appears to have sugar problems with spikes and dives. Her A1C was normal, though, so I'm not stressing it. We just solve as they arise. MaKaylah still misses her friend Haley from Jax. That was the little girl of Makay's care provider while I was in school. She still asks for "Mi Kappy," too. I miss Katheline, as well.
Jeremy
Jeremy transitioned to shore duty this year. Although he doesn't always admit it, I think he misses the ship. One thing he is loving is the ability to hunt frequently. Jeremy got a taste of possibilities this last year as he was selected for Chief's board but wasn't a board selectee. We still aren't on 100% the same page of where he should go from here, but, hopefully, we'll figure that out this year.
And last, me.
This past year was definitely a funky year. I had to learn a few new things about myself. I had to make decisions. I am continuing schooling and hope to be an RN within the next 2 years. I had to learn the hard way that not all people are good, even other moms. I got burned by a few people. I had to cut others away so I could grow on my own. I had to learn that I can't shoulder other people's weight. I can't take on my friend's responsibilities and a good friend wouldn't ask me to. This past year, I let go of 2 long time friends and 3 fake friends that I trusted too easily. I found that by letting these people go and stop worrying about their children and their mistakes, I had alot less stress around me. Amazingly, I lost 20lbs almost immediately of letting the last 3 go. It was literally and figuratively a weight off my shoudlers( and hips and belly and....). I am still struggling slightly with small reminants, like my mind wondering to these people and situations but I'm learning to stop myself. I have many people in my life who I've been friends with for years. They are fellow moms. They aren't as demanding or stressful. These are effortless friendships. They are much appreciated. My self esteem and confidence is still recovering from the other individuals but it's on the up and up. I also have a new doctor. She has hope that she can figure out what is going on with my body and get me back on track. She's the first doctor to look at me and say "yeah, you're overweight but this isn't you and this isn't something you completely did to yourself. Something's not right." She looked at my weightgain history and red-flagged it. Gaining 35lbs in 30days specifically following each pregnancy and only then isn't normal. She's also adding in the other symptoms noted and not.We are working together on this. I'm also helping with Kaitlyn's cheerleading and girl scouts and doing alot of sewing and bow making. I'm hoping, this year, to actually make and sell items again. This time, I'm including clothes with my goods.
For 2011, we have many goals, large and small. We are working to improve our home. We are still working at the Hayden puzzle. Kaitlyn may go to a competition cheer squad. I'm hoping to increase my personal income to my household. We are getting financially better and have almost gotten rid of all of our debt(minus vehicles). It's nice knowing we don't qualify for debt con. as our debt is so low. This year, this month, it will be gone. That's a great feeling. We are hoping for more vacations and travels this year. MaKaylah starts Pre-K in the fall. We'll have an empty house during the day. That will definitely be new. I'm hoping to grow with my scrapbooking. That's a new area for me and it's looking promising.
So here's to 2011, the unknown, the adventure. Let the journey begin.....
Hayden
Last year started out rocky for Hayden. We were dealing with alot of respiratory symptoms for him. As usual, we weren't getting alot of answers, just guesses. His GI stuff did a flip from diarrhea to constipation. Before, we couldn't get it to stay in. Now, we are looking for things to get it out. The last half of 2010 was promising, though. We saw a dramatic decrease in the respiratory crap and a bit of weight gain and growth. It wasn't much but it definitely was much appreciated. Hayden's weight still has both Jeremy and I concerned as he looks like a walking skeleton.
Not much we can do about it right now as his new GI doesn't look at HIM, just a piece of paper. This puts him at about 30 something% for weight. They are only concerned in he's below 25%, but when he turns 6, which is just a couple of months, his current weight puts him barely at about 10%.
On the other side, Hayden has made progress at school. He still struggles socially, but that has come to just be apart of life for him. He has made a couple of friends, Aiden and Tristan. Hayden even had Aiden over for an overnight. It went ok. Hayden's teacher tested his reading level. Hayden reads at the level of a 2nd grader halfway through the school year. This was at the beginning of Kindy. That's AWESOME! The downside to that, though, is that his reading comprehension was barely at Kindergarten. That, too, isn't surprising and is a common thing for Aspies. My theory is that he gets the rules of written english and that's why he can read such big words and books. He doesn't process it, though. It would be like you or me reading a manual on biophysics. We would read most of the words but not understand a lick of it. lol. Hayden also got a new chair this year (see previous posts). This chair has opened up freedom and independence for him. He can conserve energy and go far but have a bit of control over where he goes. He can't selfpropel huge distances or even around the grocery store, but he can move himself to things he wants to see. This has also opened up freedom for us. No longer must we have two pushers for outings or fill a shopping cart with children. It's like he's walking next to us. It's great!
Kaitlyn
Kaitlyn has started a few new things this year. She's cheering again and truly enjoys it. She's also done a few pageants again and has expressed the desire to continue. She has also started Girl Scouts. Kaitlyn's a Daisy. She's doing really well with this one, too. She's also made new friends at her new school. She's also been introduced to female drama at the elementary level. lol She has her best friends and kinda friends and friends she puts up with lol. Kaitlyn has also had her troubles this year. We are still working with her on her lying and her drive. Kaitlyn's reading level was tested, as well. She tested with the reading ability and comprehension of a 3rd grader the first week of 1st grade. Yet, another test, she tested as just above avg. for 1st grade. The way the test is administered, though, she can choose to quit when she wants. She quit early. *sigh* We will work on this motivation to finish problem. In 2010, she also had her first slumber party with 2 of her friends. That went great, better than expected.
MaKaylah-Ann
Well, what can I say about Ms. MaKay? She is just as sassy and loud as ever. This last year, she made huge progress with her speech. At the beginning of 2010, she had just begun speech therapy and wasn't speaking English at all. By the end of spring, she was running her mouth and using her words for good and evil. MaKaylah has also shown a love for sign language and picks that up easily. She still has problems with fluid on her ear drums which leads to occasional ear infections and misunderstanding of what's being said. We are working on that. Makaylah still appears to have sugar problems with spikes and dives. Her A1C was normal, though, so I'm not stressing it. We just solve as they arise. MaKaylah still misses her friend Haley from Jax. That was the little girl of Makay's care provider while I was in school. She still asks for "Mi Kappy," too. I miss Katheline, as well.
Jeremy
Jeremy transitioned to shore duty this year. Although he doesn't always admit it, I think he misses the ship. One thing he is loving is the ability to hunt frequently. Jeremy got a taste of possibilities this last year as he was selected for Chief's board but wasn't a board selectee. We still aren't on 100% the same page of where he should go from here, but, hopefully, we'll figure that out this year.
And last, me.
This past year was definitely a funky year. I had to learn a few new things about myself. I had to make decisions. I am continuing schooling and hope to be an RN within the next 2 years. I had to learn the hard way that not all people are good, even other moms. I got burned by a few people. I had to cut others away so I could grow on my own. I had to learn that I can't shoulder other people's weight. I can't take on my friend's responsibilities and a good friend wouldn't ask me to. This past year, I let go of 2 long time friends and 3 fake friends that I trusted too easily. I found that by letting these people go and stop worrying about their children and their mistakes, I had alot less stress around me. Amazingly, I lost 20lbs almost immediately of letting the last 3 go. It was literally and figuratively a weight off my shoudlers( and hips and belly and....). I am still struggling slightly with small reminants, like my mind wondering to these people and situations but I'm learning to stop myself. I have many people in my life who I've been friends with for years. They are fellow moms. They aren't as demanding or stressful. These are effortless friendships. They are much appreciated. My self esteem and confidence is still recovering from the other individuals but it's on the up and up. I also have a new doctor. She has hope that she can figure out what is going on with my body and get me back on track. She's the first doctor to look at me and say "yeah, you're overweight but this isn't you and this isn't something you completely did to yourself. Something's not right." She looked at my weightgain history and red-flagged it. Gaining 35lbs in 30days specifically following each pregnancy and only then isn't normal. She's also adding in the other symptoms noted and not.We are working together on this. I'm also helping with Kaitlyn's cheerleading and girl scouts and doing alot of sewing and bow making. I'm hoping, this year, to actually make and sell items again. This time, I'm including clothes with my goods.
For 2011, we have many goals, large and small. We are working to improve our home. We are still working at the Hayden puzzle. Kaitlyn may go to a competition cheer squad. I'm hoping to increase my personal income to my household. We are getting financially better and have almost gotten rid of all of our debt(minus vehicles). It's nice knowing we don't qualify for debt con. as our debt is so low. This year, this month, it will be gone. That's a great feeling. We are hoping for more vacations and travels this year. MaKaylah starts Pre-K in the fall. We'll have an empty house during the day. That will definitely be new. I'm hoping to grow with my scrapbooking. That's a new area for me and it's looking promising.
So here's to 2011, the unknown, the adventure. Let the journey begin.....
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