My actual birthday is not until Sunday, but we started celebrating last night. My parents offered to keep the kids overnight and we invited friends over for game night. We picked up snacks and drinks and Josh made a run to a local Mexican restaurant for chips, red and green sauce, and queso. We played Mexican Train (which is nearly the only game we ever play, but we have SO much fun playing it) for a few hours and then decided to go see Dinner for Schmucks at the spur of the moment because we were FREE and there were no sleeping children upstairs. I'm so glad we decided to go, it was HILARIOUS. So, so funny. We were still laughing hysterically as we left the theater. I don't know how people write things like that, it was a comedic masterpiece. We got home at 12:30am, but Josh and I played a little Guitar Hero anyway. It was my birthday gift from our little family; Guitar Hero 5, World Tour, and Aerosmith. Our XBOX 360 died for the 3rd and final time not long ago and we traded everything in and have been working on replenishing our game stock, this time for the Wii. The only thing we were really missing was our Guitar Hero games, so my birthday was a good time to splurge on that! We all like to play them and I especially like to jam a little when I am in need of a study break.
This morning, Josh went to pick the kids up while I slept in. When I got up the coffee was made and I grazed on leftover party foods. Nothing like chips and salsa for brunch! We've had a really low key day (except for Josh who has been working on home improvement projects like crazy), KayTar finally seems to have made a little progress with her constipation (which is a gift in itself), and in an hour we'll go to BubTar's basketball game. This evening the in-laws are making me a special dinner and we're celebrating my birthday with them.
Tomorrow, we will celebrate with my parents, go out to Olive Garden to eat, and then I'll probably spend the rest of the day shopping, since my mom usually gives me some spending money for my birthday. All in all, it is shaping up to be a pretty perfect weekend!
Saturday, July 31, 2010
Thursday, July 29, 2010
Still.
I got the results of KayTar's LFT recheck labs yesterday. THIS time her ALT is mildly elevated and her AST was at the high end of normal. LAST time her AST was mildly elevated and her ALT was within normal limits. Aye yi yi. More abnormal and nonspecific results!
However, I was doing some reading and it sounds like this is a typical laboratory finding in kids with GSD 0, which genetics is currently working her up for. Interesting. Of course, none of her doctors put this together.
Endocrine called Gastro (quick aside for you non-medical folks: gastroenterology also handles hepatology, hepatology focuses on the liver, LFTs are liver function tests) about the results, since they were still abnormal. Gastro wants them checked a THIRD time and will order further testing if they are still abnormal. Anyone want to place a bet?
Today I called Genetics to let them know about the test results, in case they need to tack some other test on to the retest panel. All of the clinics run off the same system, but unless someone CC's them specifically, they won't look at any labs but the ones they ordered until her next appointment, so if I want labs to be condensed into as few sticks as possible, I should probably let them know.
I'm feeling...something...today. I'm in a little bit of a funk. It's not because KayTar's labs were abnormal, I mean seriously, they are ALWAYS abnormal. I'm not worried. Maybe it is because I still CARE that her labs are abnormal, that there is still a little part of me that is always hopeful that this will be the set of off-kilter labs that breaks the case, that someone will pay enough attention to connect the dots and figure this out. Doctors look at constellations of symptoms to make a diagnosis and by this point, we're looking at an effing GALAXY full of them. Four years worth of them. This Sunday is my birthday and all I want, still, after all of this time, is for someone to look up into that metaphorical sky and finally recognize what it is that they are looking at.
However, I was doing some reading and it sounds like this is a typical laboratory finding in kids with GSD 0, which genetics is currently working her up for. Interesting. Of course, none of her doctors put this together.
Endocrine called Gastro (quick aside for you non-medical folks: gastroenterology also handles hepatology, hepatology focuses on the liver, LFTs are liver function tests) about the results, since they were still abnormal. Gastro wants them checked a THIRD time and will order further testing if they are still abnormal. Anyone want to place a bet?
Today I called Genetics to let them know about the test results, in case they need to tack some other test on to the retest panel. All of the clinics run off the same system, but unless someone CC's them specifically, they won't look at any labs but the ones they ordered until her next appointment, so if I want labs to be condensed into as few sticks as possible, I should probably let them know.
I'm feeling...something...today. I'm in a little bit of a funk. It's not because KayTar's labs were abnormal, I mean seriously, they are ALWAYS abnormal. I'm not worried. Maybe it is because I still CARE that her labs are abnormal, that there is still a little part of me that is always hopeful that this will be the set of off-kilter labs that breaks the case, that someone will pay enough attention to connect the dots and figure this out. Doctors look at constellations of symptoms to make a diagnosis and by this point, we're looking at an effing GALAXY full of them. Four years worth of them. This Sunday is my birthday and all I want, still, after all of this time, is for someone to look up into that metaphorical sky and finally recognize what it is that they are looking at.
Wednesday, July 28, 2010
Monday, July 26, 2010
Quotable KayTar: Week 1
I post all kinds of KayTar quote over on Facebook, but as my mom reminded me, those only stick around so long! I'd like a new format to remember all of KayTar's hilarity and insight, so I'm introducing a weekly (if I can keep it up) edition! These gems are from the past week.
After being poked with the needle, without any luck drawing blood:
On the name of a butterfly needle, said to the tech:
On the pain scale, when I asked what her pain was from 0-10 after a needle stick:
After screaming a second time after being poked:
On her choice of newspaper section at my mom's (which she did read):
When I checked on her, in the middle of the night because of her fussing, and asked why she was fussing:
When the tech came to get us for her KUB (clearly there was some confusion about exactly how we would be getting pictures of her colon):
After being poked with the needle, without any luck drawing blood:
"Well, I'm not bleeding. I guess I'm dead."
On the name of a butterfly needle, said to the tech:
"You should really call it a MOSQUITO needle, because butterflies don't have stingers and this kind of stings."
On the pain scale, when I asked what her pain was from 0-10 after a needle stick:
"65! It is a 65!"
After screaming a second time after being poked:
"You know, THAT one was just for fun. It doesn't really hurt anymore."
On her choice of newspaper section at my mom's (which she did read):
"Not the comics! I want REAL news, something really cool. About baseball."
When I checked on her, in the middle of the night because of her fussing, and asked why she was fussing:
"I just wanted some attention. That's all."
When the tech came to get us for her KUB (clearly there was some confusion about exactly how we would be getting pictures of her colon):
"Here! You can see my butt!"On explaining her drawing to me:
"Look what I did to BubTar's precious Luigi (his favorite character)! He's a BUTT! I drew him as a butt. See, that is his hat and then his face? IS A BUTT!"She went on to draw several cartoons, "The Famous BubTar Butt" "DADYY BUTT (sic)" and "TOILET MOM". Oh my. Journal time will be interesting for her Kinder teacher.
Friday, July 23, 2010
Thursday, July 22, 2010
More medical stuff....
We spent 8 hours at the hospital today. KayTar's tree nut challenge was today. Although she HATED the cashew butter and nearly barfed, she toughed it out and did it! She passed the test and now has no feeding restrictions...except for the 100,000 restrictions she puts on her own diet!
Because she had a minor episode of lip swelling a few weeks ago that seemed to be unrelated to food, the allergist wanted to run some labs (TSH, T3, T4, free T4, C3, C4, CBC w/diff and ESR). So after the 4 hour tree nut challenge, the nurse put EMLA cream on both of KayTar's antecubitals and we headed down to the outpatient lab to check in. There was a wait (both for labs and for the cream to do its job), so we went to the cafeteria to have Subway as I had promised KayTar. She likes the Spicy Italian, hold the bread, veggies, and dressings. We ate, then went back to the lab. The tech tried to get blood from both arms, but no luck. After the first try without blood, KayTar said, "I'm not bleeding. Well, I guess I'm dead." KayTar's one good vein was still bruised from Tuesday's labs. A second tech came in to try, but no dice. They sent us back upstairs for more EMLA...on her hands this time. Then we killed another 30 minutes before heading back to the lab. While we were wandering around, a nice volunteer gave KayTar a brand new little Beanie Baby bird out of the blue. She was pretty pleased. Two more sticks (one in each hand) and they finally got blood! 4 sticks total, plus some fishing around. Thank goodness for that EMLA. It was a long day. She more than earned her Little Mermaid game for the DS.
In other news, still NO POOP. I'm starting to get a little anxious about it. Since her KUB, 2.5 more days worth of stool has accumulated in there. I have a feeling this resolution is going to be fairly horrible for everyone involved. Ugh. I'm going to put a call into the gastroenterologist tomorrow morning to ask if we just stay the course or need to take additional action. We shall see.
Because she had a minor episode of lip swelling a few weeks ago that seemed to be unrelated to food, the allergist wanted to run some labs (TSH, T3, T4, free T4, C3, C4, CBC w/diff and ESR). So after the 4 hour tree nut challenge, the nurse put EMLA cream on both of KayTar's antecubitals and we headed down to the outpatient lab to check in. There was a wait (both for labs and for the cream to do its job), so we went to the cafeteria to have Subway as I had promised KayTar. She likes the Spicy Italian, hold the bread, veggies, and dressings. We ate, then went back to the lab. The tech tried to get blood from both arms, but no luck. After the first try without blood, KayTar said, "I'm not bleeding. Well, I guess I'm dead." KayTar's one good vein was still bruised from Tuesday's labs. A second tech came in to try, but no dice. They sent us back upstairs for more EMLA...on her hands this time. Then we killed another 30 minutes before heading back to the lab. While we were wandering around, a nice volunteer gave KayTar a brand new little Beanie Baby bird out of the blue. She was pretty pleased. Two more sticks (one in each hand) and they finally got blood! 4 sticks total, plus some fishing around. Thank goodness for that EMLA. It was a long day. She more than earned her Little Mermaid game for the DS.
In other news, still NO POOP. I'm starting to get a little anxious about it. Since her KUB, 2.5 more days worth of stool has accumulated in there. I have a feeling this resolution is going to be fairly horrible for everyone involved. Ugh. I'm going to put a call into the gastroenterologist tomorrow morning to ask if we just stay the course or need to take additional action. We shall see.
Wednesday, July 21, 2010
The one about poo.
If you are squeamish or just don't love reading about poop, skip this one. ;) I keep up with a lot of KayTar's medical issues here because it makes for easy future reference, constipation included.
Back on July 7th (the date of which I only know because of the blog), KayTar had a middle of the night bout of abdominal pain. The next day we doubled her Miralax dose and there was a poop-a-palooza. At BubTar's basketball practice, she pooped her undies, a pull-up, and her pants. Then at home she pooped on the toilet...then the tub. Aye-yi-yi! It was all very loose, so we skipped Miralax the next day, and then went back to normal.
Then on the 17th, she passed a large, hard stool of impressive diameter. I think we were centimeters away from reentering the fecal midwifery zone. In the middle of the night, she started having very loose stools which continued into the next day. I gave a 1/2 dose of Miralax. On the 19th, she had no stool in spite of the regular Miralax dose. I put a call into the gastroenterologist that morning, because I had a sneaking suspicion we were dealing with a blockage (or several) that the looser stools were leaking around, but without x-ray vision, it is rather tough to parse it all out. I left a message explaining the situation and requesting a KUB, but nobody called me back until yesterday morning. I took her in for the KUB and we got the results this morning.
Her colon and rectum are full of stool, not to the point of impaction, but definitely in need of a good clean out. Rather than her typical dose of 1.5 tsp of Miralax QD, we are doing 3 tsp BID for a few days. Looks like we will be staying home, battening down the hatches and preparing for the Shit Storm of the Century. Unfortunately she has her tree nut challenge tomorrow, which means we'll have to take this show on the road. She has been struggling with encopresis for a while now, which is why she is back in pull-ups. Hopefully after the clean out, that will improve once we get her maintenance dose correct. I guess there is nothing to do now but wait and see how it goes....literally AND figuratively.
Back on July 7th (the date of which I only know because of the blog), KayTar had a middle of the night bout of abdominal pain. The next day we doubled her Miralax dose and there was a poop-a-palooza. At BubTar's basketball practice, she pooped her undies, a pull-up, and her pants. Then at home she pooped on the toilet...then the tub. Aye-yi-yi! It was all very loose, so we skipped Miralax the next day, and then went back to normal.
Then on the 17th, she passed a large, hard stool of impressive diameter. I think we were centimeters away from reentering the fecal midwifery zone. In the middle of the night, she started having very loose stools which continued into the next day. I gave a 1/2 dose of Miralax. On the 19th, she had no stool in spite of the regular Miralax dose. I put a call into the gastroenterologist that morning, because I had a sneaking suspicion we were dealing with a blockage (or several) that the looser stools were leaking around, but without x-ray vision, it is rather tough to parse it all out. I left a message explaining the situation and requesting a KUB, but nobody called me back until yesterday morning. I took her in for the KUB and we got the results this morning.
Her colon and rectum are full of stool, not to the point of impaction, but definitely in need of a good clean out. Rather than her typical dose of 1.5 tsp of Miralax QD, we are doing 3 tsp BID for a few days. Looks like we will be staying home, battening down the hatches and preparing for the Shit Storm of the Century. Unfortunately she has her tree nut challenge tomorrow, which means we'll have to take this show on the road. She has been struggling with encopresis for a while now, which is why she is back in pull-ups. Hopefully after the clean out, that will improve once we get her maintenance dose correct. I guess there is nothing to do now but wait and see how it goes....literally AND figuratively.
Tuesday, July 20, 2010
More alphabet soup!
Today we made a trip to the hospital for a few tests:
* 1 KUB (she's having some constipation issues, super fun)
* Recheck of AST/ALT/GGT (AST was elevated when they tested her adrenal function)
* IGF1 and 2 testing (like I said before, the geneticist doesn't THINK growth hormone deficiency is a real contender with her normal growth, but he says he's seen it before in kids without stunted growth and wants to rule it out for sure because of the ketotic hypoglycemia)
* GSY2 gene sequencing (genetic testing for glycogen storage disease 0)
As her reward, she chose a super cute umbrella from the hospital gift shop. Orignally she wanted to go to GameStop and buy a game, then she wanted to go to ToysRus and look for princess goodies, but once she saw the umbrella it was all over! She's wanted one for ages and I promised we would get one with her school supplies, but she couldn't wait. She also had the genius idea of using it outside to help with her light sensitivity. Isn't it adorable?!
* 1 KUB (she's having some constipation issues, super fun)
* Recheck of AST/ALT/GGT (AST was elevated when they tested her adrenal function)
* IGF1 and 2 testing (like I said before, the geneticist doesn't THINK growth hormone deficiency is a real contender with her normal growth, but he says he's seen it before in kids without stunted growth and wants to rule it out for sure because of the ketotic hypoglycemia)
* GSY2 gene sequencing (genetic testing for glycogen storage disease 0)
As her reward, she chose a super cute umbrella from the hospital gift shop. Orignally she wanted to go to GameStop and buy a game, then she wanted to go to ToysRus and look for princess goodies, but once she saw the umbrella it was all over! She's wanted one for ages and I promised we would get one with her school supplies, but she couldn't wait. She also had the genius idea of using it outside to help with her light sensitivity. Isn't it adorable?!
Friday, July 16, 2010
One Year Later
It has been one year since KayTar's last episode. I thought that when it arrived we'd shoot off fireworks or hire a skywriter or get a tattoo. Hell, I never really thought it would arrive at all!
Here we are, though, 365 later...and today has been perfectly normal. Okay, maybe not TOTALLY normal, because the van wouldn't start this morning, but mostly normal. KayTar went to camp, BubTar and I went to the bookstore then to KayTar's recital. She had fun, she was happy, healthy, episode-free...just like the previous 364 days. Perfection.
In all of the medical and developmental drama in KayTar's life, those damn episodes were the absolute worst of it. There is NOTHING that I have ever experienced that is as terrible as seeing your child in uncontrollable pain...watching your child slip away from you and turn into a non-responsive tiny little ball of writhing and retching that you are helpless to soothe...for hours on end. Combine that with moments like:
And you can see how it might be a heartbreaking condition. It was horrible for her. It was horrible for us. We still live in fear of it. KayTar had a run of the mill headache a couple of weeks ago and my heart nearly stopped beating when she said, "My eyes feel funny...kind of hurting." Adrenaline was coursing through my veins and my heart was practically beating out of my chest instantly. In that moment, it didn't matter how many days it had been...the fear of it was the same as if her last one had been yesterday. I don't know if the ghost of these episodes or that visceral fear will ever really go away. I do know that I am thankful for every day she has without the burden of these awful things, and today I'm 365 days worth of thankful.
Here we are, though, 365 later...and today has been perfectly normal. Okay, maybe not TOTALLY normal, because the van wouldn't start this morning, but mostly normal. KayTar went to camp, BubTar and I went to the bookstore then to KayTar's recital. She had fun, she was happy, healthy, episode-free...just like the previous 364 days. Perfection.
In all of the medical and developmental drama in KayTar's life, those damn episodes were the absolute worst of it. There is NOTHING that I have ever experienced that is as terrible as seeing your child in uncontrollable pain...watching your child slip away from you and turn into a non-responsive tiny little ball of writhing and retching that you are helpless to soothe...for hours on end. Combine that with moments like:
Dragging your healthy son out of the Children's Museum on his BIRTHDAY because of his sick sister.
Turning around and coming home from your daughter's very special trip to see the butterflies before she ever got to see a single butterfly.
Being frozen in indecision in an airport parking lot with a tiny kid having one of these damn episodes, wondering if you should go through the trouble of checking in because she may or may not come out of it in time.
Having to switch flights at the last minute (on a totally different occasion) because she is just too sick and you have to rush home...and deciding to send your son ahead with your mom so he doesn't have to miss out.
And so on and so forth...
And you can see how it might be a heartbreaking condition. It was horrible for her. It was horrible for us. We still live in fear of it. KayTar had a run of the mill headache a couple of weeks ago and my heart nearly stopped beating when she said, "My eyes feel funny...kind of hurting." Adrenaline was coursing through my veins and my heart was practically beating out of my chest instantly. In that moment, it didn't matter how many days it had been...the fear of it was the same as if her last one had been yesterday. I don't know if the ghost of these episodes or that visceral fear will ever really go away. I do know that I am thankful for every day she has without the burden of these awful things, and today I'm 365 days worth of thankful.
Wednesday, July 14, 2010
Tuesday, July 13, 2010
Ketchup.
I finished Trig last Thursday. I ended up getting a B in the course, boo. My first two tests were a little rough, because I didn't know what to expect from the professor's exam style and I had to figure out the most efficient way to study for them...but in a 5 week class, with tests every Monday and a final on that last Thursday, there isn't a lot of time to get your legs under you. So, I pulled it up to a high B. One more week and I'd have had my A, but I'll live.
On Friday, KayTar had PT as per the usual(she did really well!), and the boys were busy packing up to go camping for a few days. Josh begged us to come along, but I just wasn't into it. I'm no outdoor girl, plus it was a scout family event and I don't really know any of them yet, due to the fact I'm never at activities because of my school schedule. I wasn't quite ready to spend 3 days and nights in one big room with these people.
My friend, E, was coming to Galveston on Friday, so we made evening plans to get together. She, her husband and two boys, and Katie and I all went out for a yummy seafood dinner and then went to Rainforest Cafe, where we took the kids on the adventure ride and had the volcano dessert. The kids were SO hilarious and cute together. They haven't seen each other since they were about 3.5, so they didn't really remember each other, but they sure warmed up to each other quick! Some of the things they said were so hilarious. At one point, H coolly said this to KayTar, "So. You going to the Jungle Cafe later?" It was such a pick-up line moment. Later, KayTar complimented the sunglasses on his head, he replied, "Yeah. I wear them in the sun." The intonation was just HILARIOUS. Very mini-stud like. They were holding hands and KayTar was chasing him around trying to give him a smooch and at the end of the night she hugged AND kissed him. She asked E, "When I grow up, can I sleepover at your house? In H's room? You should get me a cot for that, so I can be so comfortable." Ha! They were fast friends!
(Like the way he has his arm around her and she's absentmindedly fiddling with his fingers? They're 5 going on 16, I swear.)
KayTar and I spent the night at my parents' house that night. She thought it was SUPER fun. She sleeps there on occasion, but I never do, so it was extra exciting for her. I got to sleep in in the morning, and then we went swimming first thing. After swimming, we headed home for a while to get ready to go see Despicable Me. It was hilarious!! I highly recommend it. We're taking the boys to see it this week sometime, because it is worth watching again...and I'm not big on kid movies. After the movie, we went to my parents' house again. My dad grilled some chicken thigh, stuffed with mozzarella and jalapenos, wrapped in bacon. YUM. We had corn on the cob and baked potatoes, too. We swam again and headed home for the night after that.
On Sunday, we drove up to the campgrounds to visit our boys! We had a fun day. Lunch, swimming in the river, dinner. It was great. My favorite part was the swimming, because I hate being outside unless I'm in water..it is ridiculously hot here during the summer. I hate it. I took a lot of photos while we were there, I'll post my favorites tomorrow.
Yesterday was KayTar's genetics appointment. He was so unprepared. I guess he read her early file and none of the recent material? He wanted to discuss her dystonia and paroxysmal torticollis...that was YEARS ago! I had to give him the rundown as he read through her labs and attending notes on the system. By the end, he agreed we should test for GSD 0 and he also wants to rule out growth hormone deficiencies. He said it is unlikely, because she is within the age-appropriate growth parameters, but he's seen at least one patient with these deficiencies that wasn't small for age. We'll have the labs run later this week, as well as a recheck of her AST/ALT due to the elevated AST on her last round, later this week. She's chosen a shopping trip to GameStop for her post-needle treat this time. Yes, we bribe her. Yes, we're okay with this. She's had so many tests, she deserves a little something extra for being such a sport about it. If a new Pillow Pet or a video game can ease her anxiety, so be it! BubTar gets rewards for all A's on report cards...it is the same principle. After all the labs are back, it looks like she will be doing an inpatient fast. Yikes, I'm sure that will be loads of fun. (No, it won't. Not. At. All.)
The boys got home around the same time as us and we just relaxed for the day and went swimming in the evening. We played Super Mario Bros Wii last night for the first time in over 5 weeks (we're trying to beat it), then I listened to KayTar read my some Junie B. before bed. It was the perfect long weekend!
On Friday, KayTar had PT as per the usual(she did really well!), and the boys were busy packing up to go camping for a few days. Josh begged us to come along, but I just wasn't into it. I'm no outdoor girl, plus it was a scout family event and I don't really know any of them yet, due to the fact I'm never at activities because of my school schedule. I wasn't quite ready to spend 3 days and nights in one big room with these people.
My friend, E, was coming to Galveston on Friday, so we made evening plans to get together. She, her husband and two boys, and Katie and I all went out for a yummy seafood dinner and then went to Rainforest Cafe, where we took the kids on the adventure ride and had the volcano dessert. The kids were SO hilarious and cute together. They haven't seen each other since they were about 3.5, so they didn't really remember each other, but they sure warmed up to each other quick! Some of the things they said were so hilarious. At one point, H coolly said this to KayTar, "So. You going to the Jungle Cafe later?" It was such a pick-up line moment. Later, KayTar complimented the sunglasses on his head, he replied, "Yeah. I wear them in the sun." The intonation was just HILARIOUS. Very mini-stud like. They were holding hands and KayTar was chasing him around trying to give him a smooch and at the end of the night she hugged AND kissed him. She asked E, "When I grow up, can I sleepover at your house? In H's room? You should get me a cot for that, so I can be so comfortable." Ha! They were fast friends!
KayTar and I spent the night at my parents' house that night. She thought it was SUPER fun. She sleeps there on occasion, but I never do, so it was extra exciting for her. I got to sleep in in the morning, and then we went swimming first thing. After swimming, we headed home for a while to get ready to go see Despicable Me. It was hilarious!! I highly recommend it. We're taking the boys to see it this week sometime, because it is worth watching again...and I'm not big on kid movies. After the movie, we went to my parents' house again. My dad grilled some chicken thigh, stuffed with mozzarella and jalapenos, wrapped in bacon. YUM. We had corn on the cob and baked potatoes, too. We swam again and headed home for the night after that.
On Sunday, we drove up to the campgrounds to visit our boys! We had a fun day. Lunch, swimming in the river, dinner. It was great. My favorite part was the swimming, because I hate being outside unless I'm in water..it is ridiculously hot here during the summer. I hate it. I took a lot of photos while we were there, I'll post my favorites tomorrow.
Yesterday was KayTar's genetics appointment. He was so unprepared. I guess he read her early file and none of the recent material? He wanted to discuss her dystonia and paroxysmal torticollis...that was YEARS ago! I had to give him the rundown as he read through her labs and attending notes on the system. By the end, he agreed we should test for GSD 0 and he also wants to rule out growth hormone deficiencies. He said it is unlikely, because she is within the age-appropriate growth parameters, but he's seen at least one patient with these deficiencies that wasn't small for age. We'll have the labs run later this week, as well as a recheck of her AST/ALT due to the elevated AST on her last round, later this week. She's chosen a shopping trip to GameStop for her post-needle treat this time. Yes, we bribe her. Yes, we're okay with this. She's had so many tests, she deserves a little something extra for being such a sport about it. If a new Pillow Pet or a video game can ease her anxiety, so be it! BubTar gets rewards for all A's on report cards...it is the same principle. After all the labs are back, it looks like she will be doing an inpatient fast. Yikes, I'm sure that will be loads of fun. (No, it won't. Not. At. All.)
The boys got home around the same time as us and we just relaxed for the day and went swimming in the evening. We played Super Mario Bros Wii last night for the first time in over 5 weeks (we're trying to beat it), then I listened to KayTar read my some Junie B. before bed. It was the perfect long weekend!
Sunday, July 11, 2010
Quick quip...
I have lots of catching up to do, but tonight I only have time to share this little gem.
Today KayTar and I went to visit the boys at campgrounds. My parents decided to come, too, so I was calling them to get an ETA.
My mom kept saying, "Kyla? Kyla, you sound so far away! I can't really hear you, Kyla!" I thought it was just poor reception because we were out in the woods, so I let her go.
A few seconds later my phone rang again, but it was my dad this time. He was laughing hysterically, he could barely speak. He manages to say, "Kyla! Your mom couldn't hear you because she was holding the phone UPSIDE DOWN!" before dissolving into hysterics again.
We couldn't stop laughing about it and the story made the rounds at the campsite! I think we're going to get her one of those "This end up!" stickers for her phone!
Today KayTar and I went to visit the boys at campgrounds. My parents decided to come, too, so I was calling them to get an ETA.
My mom kept saying, "Kyla? Kyla, you sound so far away! I can't really hear you, Kyla!" I thought it was just poor reception because we were out in the woods, so I let her go.
A few seconds later my phone rang again, but it was my dad this time. He was laughing hysterically, he could barely speak. He manages to say, "Kyla! Your mom couldn't hear you because she was holding the phone UPSIDE DOWN!" before dissolving into hysterics again.
We couldn't stop laughing about it and the story made the rounds at the campsite! I think we're going to get her one of those "This end up!" stickers for her phone!
Wednesday, July 07, 2010
Ouch!
We had a decent 4th. Josh and I spent the entire day writing papers (for the same class), but in the evening we sent the kids to my parents' house and we out with friends. Traffic, fireworks, food, drinks, and a rollercoaster. Fun night! Monday I had a trig exam, last night was lecture, and tomorrow is my final. Joy. We've had three kids attempt to spend the night in the last week and all of them got homesick and went home. Poor BubTar (2 of the 3 were his buds) took it like a knife to the heart, he's so sensitive. I tried to explain it has very little to do with him (the kids were already trying to make new plans with him as they were leaving), but he takes things so personally. It was sad.
After our little boarder left last night, I set up the pump to slow feed KayTar and Josh and I settled in to watch Hell's Kitchen and an episode of Louie. The feed finished, I unhooked her, and went back to watch more TV. 15-20 minutes later she started fussing. I'd pause the TV and she would get quiet, I would hit play and she would start up. I started to wonder if she was being controlled by the remote as well. I went up to check on her and she was writhing a little and moaning, I asked what was wrong and she said she was too full, so I called down and asked Josh to bring up a bowl just in case. Too full usually means puking. She didn't puke, though, and the pain got worse. Usually, there is no pain when she is too full. In fact, for all of her gastro issues, she never has pain. I vented her tube, though, and pulled out some of the feed with a syringe, in case she actually was too full or too gassy. It didn't help and her pain got worse.
We brought her downstairs and by that time she was crying and shivering with pain. I checked a rectal temp and it was totally normal. I asked her to touch the place where it hurt the most with one finger, but she couldn't articulate it. She kept moving her finger from place to place and then said, "I don't know! Just tell me the answer!" I guess it was generalized pain. I asked her if she wanted to be held or to sit in her baby chair or lay in bed and she got very agitated and said, "I can't tell you! You just decide!" We tried to set her in her baby chair to rest, but she couldn't get comfortable. Josh held her on the sofa, and he patted her back in the soothing, absentminded way we all seem to do when holding a baby. KayTar sharply told him, "Stop that! It is making me hurt worse!" A few minutes later he cracked a little joke about her needing to toot and she said, "I AM NOT KIDDING!" She loves a good fart joke, so she's feeling pretty rough when she can't appreciate one. She never has pain like this, even though she has a history of constipation, so I was a little concerned. She settled down, though, and slept through the night and has been fine today. She fell asleep around about 1:45 in the morning and I stayed up for a while longer, waiting for her to call out again, but she didn't.
This morning, she didn't tolerate her entire morning feed, but otherwise she seems to be 100%. I've given her some extra Miralax with water today, in case it is constipation, but I'm not really sure what caused the pain. I emailed our pediatrician (I bet she regrets giving me that address sometimes, but she never lets on, LOL.) and she said that it isn't likely to be intussusception or appy with this presentation, but to go in if it comes back again. I sure hope it doesn't come back, though, because I've got a trig final tomorrow and spending today at the doctor or ER for abdominal pain will not be a good thing!
On a totally unrelated note, I think she has aspirations to be the next Billy Mays:
After our little boarder left last night, I set up the pump to slow feed KayTar and Josh and I settled in to watch Hell's Kitchen and an episode of Louie. The feed finished, I unhooked her, and went back to watch more TV. 15-20 minutes later she started fussing. I'd pause the TV and she would get quiet, I would hit play and she would start up. I started to wonder if she was being controlled by the remote as well. I went up to check on her and she was writhing a little and moaning, I asked what was wrong and she said she was too full, so I called down and asked Josh to bring up a bowl just in case. Too full usually means puking. She didn't puke, though, and the pain got worse. Usually, there is no pain when she is too full. In fact, for all of her gastro issues, she never has pain. I vented her tube, though, and pulled out some of the feed with a syringe, in case she actually was too full or too gassy. It didn't help and her pain got worse.
We brought her downstairs and by that time she was crying and shivering with pain. I checked a rectal temp and it was totally normal. I asked her to touch the place where it hurt the most with one finger, but she couldn't articulate it. She kept moving her finger from place to place and then said, "I don't know! Just tell me the answer!" I guess it was generalized pain. I asked her if she wanted to be held or to sit in her baby chair or lay in bed and she got very agitated and said, "I can't tell you! You just decide!" We tried to set her in her baby chair to rest, but she couldn't get comfortable. Josh held her on the sofa, and he patted her back in the soothing, absentminded way we all seem to do when holding a baby. KayTar sharply told him, "Stop that! It is making me hurt worse!" A few minutes later he cracked a little joke about her needing to toot and she said, "I AM NOT KIDDING!" She loves a good fart joke, so she's feeling pretty rough when she can't appreciate one. She never has pain like this, even though she has a history of constipation, so I was a little concerned. She settled down, though, and slept through the night and has been fine today. She fell asleep around about 1:45 in the morning and I stayed up for a while longer, waiting for her to call out again, but she didn't.
This morning, she didn't tolerate her entire morning feed, but otherwise she seems to be 100%. I've given her some extra Miralax with water today, in case it is constipation, but I'm not really sure what caused the pain. I emailed our pediatrician (I bet she regrets giving me that address sometimes, but she never lets on, LOL.) and she said that it isn't likely to be intussusception or appy with this presentation, but to go in if it comes back again. I sure hope it doesn't come back, though, because I've got a trig final tomorrow and spending today at the doctor or ER for abdominal pain will not be a good thing!
On a totally unrelated note, I think she has aspirations to be the next Billy Mays:
Saturday, July 03, 2010
My new best friend...
Otherwise known as KayTar's portable enteral feeding pump.
Zevex Enteralite Infinity.
I love this thing. KayTar loves this thing. Josh loves this thing. BubTar is even excited about it and had me train him on how to work it. He is also campaigning for his own hydration pack now, because he wants a cool backpack like KayTar.
We were out of the house from 10:30am-6pm today. In that time span, she needs two 8 ounce Pediasure feeds. In the past, we would be lucky is she drank 1/2 a Pediasure by mouth when we were out and about...to accomplish that, we'd have to say, "KayTar, drink." "KayTar, you have to drink your Pediasure!" "KayTar, don't forget your Pediasure." We'd plan our day around being home in time for her feeds most of the time. Today, we were out for HOURS and she was free to be active, participate in everything we did and she still got in two full feeds, and she also ate with us at meal time. It was awesome.
KayTar has grown so well that now she needs more calories and carbohydrates to keep up. She has recently gone from 3 Pediasure feeds to 4. Now that we have the pump, we can slow feed her the 4th while she sleeps. With bolus feeding, we couldn't do that.
The pump is very light. It comes with a small backpack that KayTar can easily wear while we are out and it also attaches to an IV pole for stationary/at home feeds. It is not gravity fed (unlike the Kangaroo Joey) when in the backpack so KayTar can do anything in it, even somersaults, and it would keep right on going. The programming is very intuitive and we haven't run into any problems with it. It was even covered by insurance. If you are looking for a portable pump, we highly recommend this one!
I love this thing. KayTar loves this thing. Josh loves this thing. BubTar is even excited about it and had me train him on how to work it. He is also campaigning for his own hydration pack now, because he wants a cool backpack like KayTar.
We were out of the house from 10:30am-6pm today. In that time span, she needs two 8 ounce Pediasure feeds. In the past, we would be lucky is she drank 1/2 a Pediasure by mouth when we were out and about...to accomplish that, we'd have to say, "KayTar, drink." "KayTar, you have to drink your Pediasure!" "KayTar, don't forget your Pediasure." We'd plan our day around being home in time for her feeds most of the time. Today, we were out for HOURS and she was free to be active, participate in everything we did and she still got in two full feeds, and she also ate with us at meal time. It was awesome.
KayTar has grown so well that now she needs more calories and carbohydrates to keep up. She has recently gone from 3 Pediasure feeds to 4. Now that we have the pump, we can slow feed her the 4th while she sleeps. With bolus feeding, we couldn't do that.
The pump is very light. It comes with a small backpack that KayTar can easily wear while we are out and it also attaches to an IV pole for stationary/at home feeds. It is not gravity fed (unlike the Kangaroo Joey) when in the backpack so KayTar can do anything in it, even somersaults, and it would keep right on going. The programming is very intuitive and we haven't run into any problems with it. It was even covered by insurance. If you are looking for a portable pump, we highly recommend this one!
Thursday, July 01, 2010
KayTar's Medical Hoopla v5.0
I haven't done a medical wrap-up in quite sometime. Here goes!
KayTar is our little diagnosis defying diva! As you can see, she has had LOT of tests in her wee little life and the majority of the results have every been are ABNORMAL, BUT NONSPECIFIC. Here is what we DO know:
1. She has a smattering of small lesions in her brain, in the frontal, temporal, and parietal lobes. Do the doctors know how they got there? NOPE! But there they are! The theories including an insult in utero, such as a CMV infection (this is unlikely because there are no calcifications on CT scan), or perhaps a metabolic disorder (this is somewhat unlikely because her MRI is not a classic presentation of a metabolic disorder).
2. She has a feeding disorder/sensory issues. She only eats specific foods and only when she "feels like it". Her diet mostly consists of fatty, salty meats (sausage, bacon, chicken nuggets, ect). She eats no bread, cereals, pastas. She eats no fruit or juice. She only eats certain veggies and ONLY in stage 2 baby food purees. Some days she doesn't eat anything. We use Pediasure to give her what she needs, and to do that we need her g-button. We try to goad her into drinking as much Pediasure as she is willing to, but we use her g-button every day to make up for the rest. Certain textures and sounds make her gag and vomit instantly and it is waaaay more than "picky eating". I'm a picky eater. BubTar is a picky eater. KayTar doesn't always feel hunger and she rarely acts on it appropriately. It is definitely not picky eating. She is in OT for the sensory stuff and feeding issues.
3. She has mild gross motor delays. These used to be HUGE gross motor delays, but she has made some great progress over the years. She didn't walk until 25 months and was still struggling quite a bit with balance and core strength until she got the g-button and then her strength considerably improved. She used to be significant, globally delayed, but now she has caught up to her peers (and sometimes surpassed them) in nearly every way. She can read at/above a 3rd grade level at 5...she's been reading since at least 27 months, perhaps sooner, but she couldn't really speak until then, so we don't know. She can tell you that fingers and toes are called phalanges and that urine is 95% water and 5% urea...among other things. She's a smarty-pants, and you'd never guess she had such a rough start in life if you met her now.
4. She has unilateral left-sided hearing loss. It used to be mod-severe, but has progressed to profound. She used to wear a hearing aid, but it can't help anymore. So far, her right ear is fine...but they can't tell us what caused her deafness and they can't tell us if it will progress to the other ear in the future.
5. She has chronic constipation, which we treat with Miralax. It is mostly a non-issue these days, but we can't seem to get her 100% poo-trained on the potty. I think the need for Miralax is working against her. The explanation here is that kids with any level of neurological impairment often have poor GI motility. Josh hates this explanation.
6. She has mild asthma and a penchant for URIs, bronchitis, and occasionally pneumonia. She is on Qvar and Albuterol. She gets sick, she gets congested, she start vomiting and she stops eating and drinking. This happens ALL.THE.TIME. I don't know how we survived without the g-button for so long. She used to get strep like crazy, but we had her tonsils and adenoids out in November '08 (at the same time as her g-button placement and muscle biopsy) and she hasn't had a case of it since.
7. (This one is new!) We now know that when she gets sick, she also gets ketotic (she starts burning fat for energy rather than glucose) if we don't load her up with some glucose-rich food or drink STAT, then she gets hypoglycemia. It also happens when she fasts for too long (which isn't nearly as long as "normal" people can fast) or when she is too active. She was ketotic almost every day of camp recently. Ketotic hypoglycemia! We're in the midst of a work-up for this, she just had an ACTH stimulation test (got the results today: normal adrenal response, but slightly elevated AST, so we have to go back in to repeat AST/ALT labs) and we see a new geneticist who specializes in this area in a couple of weeks.
8. She used to (knock on wood) have really horrific neurological episodes or attacks in which she would exhibit a mix and match variety of symptoms: extreme pain, extreme light sensitivity, vomiting, "spinny-ness", sometimes drunken/silly behavior, and always, ALWAYS a significantly altered level of consciousness. She would go from being regular KayTar to mostly non-responsive KayTar...she would only respond to pain. I hated that part the most. When she was younger, they also consisted of a head tilt, it was like her head was magnetically attached to her shoulder for the duration of the episode. They started out lasting roughly 20-30 minutes, but as time went on they grew to be as long as 18 hours in length. They used to happen about every 15 days like clockwork. Eventually they spaced out some and then the placement of her g-button nearly eradicated them. She's only had 2 since her tube was placed and we are almost 2 weeks away from a full year without one. (KNOCK ON WOOD!!!) The long standing medical theory is that they are some kind of atypical migraine or migraine seizure hybrid. My theory (which is what led us to the ketotic hypoglycemia discovery) is that they are triggered by a metabolic crisis of some sort, such as severe hypoglycemia. Her altered mental status could be easily explained by neuroglycopenia. They happened most often when she was ill or when we had an especially busy or exciting day, when her intake would have been low and her energy expenditure would have been high.
9. She has had a few fairly impressive reactions to an unknown allergen; lip and tongue swelling accompanied by vomiting. She's had a couple of RAST tests run, a couple of scratch tests, a peanut challenge, and we've got a tree nut challenge coming up in a couple of weeks. If it is all negative, they may do some immune testing to figure out what is causing the edema. We carry an epi-pen just in case.
10. She has pretty severe sun sensitivity. Some days she can't tolerate being outdoors at all. When we walk from the car to the store she has to totally close her eyes most of the time. We ordered transitions lenses for her latest pair of glasses and they help somewhat, but not entirely. Sometimes she says, "Help! My magic lenses aren't changing!" but they are as dark as can be and the sun is still too bright for her to open her eyes. We have to be careful about planning outings that require time in the sun, because we never know how her eyes will behave. Neuro has turfed this to ophtho and ophtho has turfed it to neuro...and nobody has figured it out.
So that's the wrap-up! I think I hit most of the majors. She is followed by a pediatrician, neurologist, geneticist, gastroenterologist, otolaryngologist, ophthalmologist, endocrinologist, orthopedist, and a pediatric surgeon. She goes to OT and PT every week. She's being mainstreamed for Kindergarten. She is healthier than she has ever been. She's thriving these days and we're so, so happy about that.
KayTar is our little diagnosis defying diva! As you can see, she has had LOT of tests in her wee little life and the majority of the results have every been are ABNORMAL, BUT NONSPECIFIC. Here is what we DO know:
1. She has a smattering of small lesions in her brain, in the frontal, temporal, and parietal lobes. Do the doctors know how they got there? NOPE! But there they are! The theories including an insult in utero, such as a CMV infection (this is unlikely because there are no calcifications on CT scan), or perhaps a metabolic disorder (this is somewhat unlikely because her MRI is not a classic presentation of a metabolic disorder).
2. She has a feeding disorder/sensory issues. She only eats specific foods and only when she "feels like it". Her diet mostly consists of fatty, salty meats (sausage, bacon, chicken nuggets, ect). She eats no bread, cereals, pastas. She eats no fruit or juice. She only eats certain veggies and ONLY in stage 2 baby food purees. Some days she doesn't eat anything. We use Pediasure to give her what she needs, and to do that we need her g-button. We try to goad her into drinking as much Pediasure as she is willing to, but we use her g-button every day to make up for the rest. Certain textures and sounds make her gag and vomit instantly and it is waaaay more than "picky eating". I'm a picky eater. BubTar is a picky eater. KayTar doesn't always feel hunger and she rarely acts on it appropriately. It is definitely not picky eating. She is in OT for the sensory stuff and feeding issues.
3. She has mild gross motor delays. These used to be HUGE gross motor delays, but she has made some great progress over the years. She didn't walk until 25 months and was still struggling quite a bit with balance and core strength until she got the g-button and then her strength considerably improved. She used to be significant, globally delayed, but now she has caught up to her peers (and sometimes surpassed them) in nearly every way. She can read at/above a 3rd grade level at 5...she's been reading since at least 27 months, perhaps sooner, but she couldn't really speak until then, so we don't know. She can tell you that fingers and toes are called phalanges and that urine is 95% water and 5% urea...among other things. She's a smarty-pants, and you'd never guess she had such a rough start in life if you met her now.
4. She has unilateral left-sided hearing loss. It used to be mod-severe, but has progressed to profound. She used to wear a hearing aid, but it can't help anymore. So far, her right ear is fine...but they can't tell us what caused her deafness and they can't tell us if it will progress to the other ear in the future.
5. She has chronic constipation, which we treat with Miralax. It is mostly a non-issue these days, but we can't seem to get her 100% poo-trained on the potty. I think the need for Miralax is working against her. The explanation here is that kids with any level of neurological impairment often have poor GI motility. Josh hates this explanation.
6. She has mild asthma and a penchant for URIs, bronchitis, and occasionally pneumonia. She is on Qvar and Albuterol. She gets sick, she gets congested, she start vomiting and she stops eating and drinking. This happens ALL.THE.TIME. I don't know how we survived without the g-button for so long. She used to get strep like crazy, but we had her tonsils and adenoids out in November '08 (at the same time as her g-button placement and muscle biopsy) and she hasn't had a case of it since.
7. (This one is new!) We now know that when she gets sick, she also gets ketotic (she starts burning fat for energy rather than glucose) if we don't load her up with some glucose-rich food or drink STAT, then she gets hypoglycemia. It also happens when she fasts for too long (which isn't nearly as long as "normal" people can fast) or when she is too active. She was ketotic almost every day of camp recently. Ketotic hypoglycemia! We're in the midst of a work-up for this, she just had an ACTH stimulation test (got the results today: normal adrenal response, but slightly elevated AST, so we have to go back in to repeat AST/ALT labs) and we see a new geneticist who specializes in this area in a couple of weeks.
8. She used to (knock on wood) have really horrific neurological episodes or attacks in which she would exhibit a mix and match variety of symptoms: extreme pain, extreme light sensitivity, vomiting, "spinny-ness", sometimes drunken/silly behavior, and always, ALWAYS a significantly altered level of consciousness. She would go from being regular KayTar to mostly non-responsive KayTar...she would only respond to pain. I hated that part the most. When she was younger, they also consisted of a head tilt, it was like her head was magnetically attached to her shoulder for the duration of the episode. They started out lasting roughly 20-30 minutes, but as time went on they grew to be as long as 18 hours in length. They used to happen about every 15 days like clockwork. Eventually they spaced out some and then the placement of her g-button nearly eradicated them. She's only had 2 since her tube was placed and we are almost 2 weeks away from a full year without one. (KNOCK ON WOOD!!!) The long standing medical theory is that they are some kind of atypical migraine or migraine seizure hybrid. My theory (which is what led us to the ketotic hypoglycemia discovery) is that they are triggered by a metabolic crisis of some sort, such as severe hypoglycemia. Her altered mental status could be easily explained by neuroglycopenia. They happened most often when she was ill or when we had an especially busy or exciting day, when her intake would have been low and her energy expenditure would have been high.
9. She has had a few fairly impressive reactions to an unknown allergen; lip and tongue swelling accompanied by vomiting. She's had a couple of RAST tests run, a couple of scratch tests, a peanut challenge, and we've got a tree nut challenge coming up in a couple of weeks. If it is all negative, they may do some immune testing to figure out what is causing the edema. We carry an epi-pen just in case.
10. She has pretty severe sun sensitivity. Some days she can't tolerate being outdoors at all. When we walk from the car to the store she has to totally close her eyes most of the time. We ordered transitions lenses for her latest pair of glasses and they help somewhat, but not entirely. Sometimes she says, "Help! My magic lenses aren't changing!" but they are as dark as can be and the sun is still too bright for her to open her eyes. We have to be careful about planning outings that require time in the sun, because we never know how her eyes will behave. Neuro has turfed this to ophtho and ophtho has turfed it to neuro...and nobody has figured it out.
So that's the wrap-up! I think I hit most of the majors. She is followed by a pediatrician, neurologist, geneticist, gastroenterologist, otolaryngologist, ophthalmologist, endocrinologist, orthopedist, and a pediatric surgeon. She goes to OT and PT every week. She's being mainstreamed for Kindergarten. She is healthier than she has ever been. She's thriving these days and we're so, so happy about that.
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