In about 24 hours from now I will be arriving at KU Med getting ready for my tissue expander surgery, IF I don't go crazy between now and then.
Let's see, first I leave work in about one hour, go home and try to sleep before coming back to work at 1pm this afternoon. Then home at 11:30pm to drink a big glass of water before midnight, cause then it's nothing by mouth until well after 3 pm on Friday!!
Doesn't sound like a big deal, except Ethan's G-J tube is starting to become difficult to flush-AGAIN! If we have to go trade this one out, it will be 5 visits to Interventional Radiology at CMH in 4 weeks with 4 tube changes. They know us well, and I'm pretty sure like us, but I think even we are pushing our luck!!!
This is getting ridiculous! We aren't doing anything differently than we have for say, the last 4 years, other than formula change. And the formula we are using he has been on for over a year, so we are really baffled. So if any of my J tube Moms have any advice, please share! We've done Coke, meat tenderizer, going to try seltzer water today, and we flush all the time!
Umm, add to that we planned to have him at school today and tomorrow, not running him down to the Mercy either of those days!
Hailey needs some last minute prom stuff and since I'm working tonight, I'm not sure how we are gonna get that done.
I need to pack and coordinate what comfy jammys I will be living in for the next week.
And, what to do with my hair??
Now that it's come in curly, it's kinda crazy looking after it's slept on. Gives a whole new meaning to 'bed head' for sure.
Since I won't be showering for a week or so, I may need some hair washing volunteers again!
Oh, and my biggest dilemma?
Don't laugh....
I really needed to get my eyebrows waxed before surgery. I don't want some anesthesiologist staring at these overgrown things for two hours completely disgusted! Unfortunately that's not in the time schedule, so plucking in the bathroom mirror will have to suffice!
Thanks to all my wonderful family and friends helping us out this weekend;
mom coming to stay with the boys and dogs
Dad and Teresa getting Hailey to Emporia to meet Jonny for Prom
Kate coming to get the bald kid on the bus tomorrow morning
Jody and Carissa for being my hospital babysitters
Ashley for trading shifts with me so I'm getting my hours in this week
Andrea for setting up the Meal Train again while I'm off
And all of your thoughts and prayers!
The Meal Train Andrea set up can be accessed through this link:
http://www.mealtrain.com/?id=mo2wq3v17wjt
We greatly appreciate the meals, and are not picky at all! Don't need any five course, gourmet meals to please my kids. Just won't be lifting my arms higher than mid chest for the first two weeks makes it really hard to cook. That and the Dilaudid.
If there is a day that you want to bring something and the date isn't listed, just email Andrea and she will add the day. We didn't list every day, just every few.
Andrea.Phillips@NKCH.org
Thanks again everyone.
Brian will update from the hospital.
Time to get some new boobs!
Thursday, April 11, 2013
Monday, April 8, 2013
Home it is!
Brian just texted me at work-he is packing up the bald kid right now to head home!
Sats have been 90-92 on room air.
Heart rate has been mid to high 40's.
The Purple Team is not completely comfortable sending him home, but deferred to Cardiology and Dr Kaine said to cut him loose, and we trust that man!
Digoxin is to be stopped completely, and we are to follow up with Cardiology in 4-6 weeks about his heart rate.
He's ready to be home and we are ready for him to be in his own bed tonight!
Happy Monday!
Sats have been 90-92 on room air.
Heart rate has been mid to high 40's.
The Purple Team is not completely comfortable sending him home, but deferred to Cardiology and Dr Kaine said to cut him loose, and we trust that man!
Digoxin is to be stopped completely, and we are to follow up with Cardiology in 4-6 weeks about his heart rate.
He's ready to be home and we are ready for him to be in his own bed tonight!
Happy Monday!
The "H" word....and lots of other crap
I won't say it. Or even type it.
But it could happen tomorrow.
Ethan has been back on full feeds since Friday.
His heart rate is back up to high 50's low 60's.
He is tired of hanging out at the CMH, but off oxygen he was only at 87-88, so that has been the only thing keeping him there. They want him to be without oxygen while sleeping and keep his sats above 90. Not sure how soon that's gonna happen. Since we've done the oxygen at home thing before, I'm ready to pack his skinny butt up and head home with some O's rather than wait for him to come down with something else!
They think his seasonal allergies and asthma are what set all of this off, and warned us they expect this to be a bad, bad, very bad spring allergy season! Woo-hoo! Back on an asthma action plan we go. I am going to ask about increasing his Robinul though. Pulmonology was trying to wean him off it, but with the increased secretions, I think he needs it full strength again. The Robinul is used off label to help control secretions-Ethan's drooling-and it really helps.
Whenever he has a little virus or allergy flare up, his skin gets crazy. His eczema acts up and the skin around his GJ gets red and angry. So wound care came by and hooked us up with some fabulous products! Mepilex and Stomahesive powder and Cavilon No-Sting barrier cream. Oh, and a Flexi-trak device to hold his tubing in place and keep it from moving around his stoma and irritating it. We haven't been in the hospital for so long we didn't know about all these new fancy tools and gadgets! Time to make more room in the bald kid's supply cabinet!
I expressed my concern about his heart rate, so Dr Kaine came by Friday afternoon. I was crashed out from working the night before, and the one time my husband didn't wake me up was this time! Dr Kaine is not concerned about the bald kids heart rate, but still hasn't decided whether we are keeping him on the Digoxin or not. What I did not get a chance to ask, and my husband didn't think to, was when do we need to be concerned? They have moved his follow up Cardiology appt from 6 months to 3 months, so if nothing else, I will ask then!
These last two weeks everyone in our house has had a run of illness. It started with me week before last-sinus infection, upper respiratory infection, the start of a little pneumonia. Then Brian two days later, then the bald kid, and finally Hailey and Parker missed school Thursday and Friday. So, as I am taking one kid to the hospital, nursing two other kids, a husband and my own illness, I also worked full time-nights no less-minus the 3 hours late I went in the night E was admitted since my husband was at home sick and I needed to get him settled in the big house before going in to work. But we managed, as we always do. And our older kids stepped up, took care of themselves, and their responsibilities.
Hailey missed VB practice Thursday evening because of this illness that spread through all five of us in our house in 7 days. We kept her home in the thought we did not want to expose her whole team to the illness. She had a tournament on Saturday and we felt missing one practice to rest and get better for her tournament was the best thing to do.
Well, apparently her coach thought she was either playing hooky or that she should have come anyway based on the shitty text she sent her, not sending her a pre-tourney text about arrival time and jersey color, and the way she treated her at the tournament itself. I don't post about certain incidents because I don't know who all reads this, and I don't want to call anyone out or hurt anyone's feelings. This time, I'm done being nice while someone treats my kids poorly. Gloves are off. And whatever I say on here, my husband I will be sharing with her coach, in person. This is not an email or text convo. So you might be asking why I'm posting? Because with all the focus on the way some coaches treat kids badly, I want people to know it can happen in any sport, at any age and we as parents can't keep allowing it. Hailey has missed 3 practices of club ball all season-two for illness-this being one, and one for a visitation. Less than all her teammates. And she's never missed a tournament-never a minute. She made the commitment and she takes it seriously. Hailey went to her tourney by herself Saturday morning because Brian was at the hospital with E and I worked until 0530 and went home to sleep. Yep, she set her alarm, got up, got there at the time she had to text and ask her coach what time to be there, all by herself. Her coach was 10 minutes late.
They had to ref the first game, which Hailey always willingly helps. She line judged. Between games she and another girl agreed to switch, so she went to the bathroom because her nose was running and she needed to pee. Upon arriving back to the bench, her coach attacked her and accused her of shirking her responsibilities. I'm more than a little disappointed the girl whom she had switched line judging with didn't speak up during this. Of course Hailey didn't drop the dime on her, because she's not like that. But wow-awesome team mate! The coach accused her of not having her head in it-in what exactly? Their game hadn't even started. So Hailey, who would never back talk an adult, except her dad or I, apologized and told her that her allergies were bothering her and her brother was in the hospital. At this point her coach told her maybe then she didn't even need to be there. And not because she was worried about her state of mind. Well, for a 16 year old to get herself to her tournament without parents, and while her brother is in the hospital, and with a coach who couldn't be bothered to send her the tourney info, I'd say that says something about that kid's character. So I will be damned if that coach gets to make her feel bad about it. How about you address the tardiness of girls to tournaments, the attitude and arguing with refs which resulted in one girl getting a yellow card from HOA or the general lackadaisical, 'don't want to be there' attitude others have had. So much for believing this coach who told us from day one she doesn't put up with drama. We've got enough real life drama, don't need it from a coach with her own. And I really wonder if she would have treated Hailey that way had one of us been there.
We hate missing any of the kids events, but sometimes that's life. They know it and understand it. It's not fair and neither is life. And if Hailey was shirking her responsibilities, I expect it to be addressed, but those of you who know our girl-know that's probably not likely! And I expect it to be done respectfully, at least that's what we expect from our kids, so it's not too much to ask for it in return.
Sorry for the rant, but I am trying to keep it all together after the shitty month I've had, and this incident just about pushed me over the edge. Me, the one who never lets shit get to her, cried the whole way home from the hospital. I'm done letting people attack my kids. I let it slide in the name of a friendship of my husbands many years ago-and I never should have. I should have gone right across the street and punched her in her big nose and fake mole. Sorry-story for another time.
But between my work comp knee injury-which BTW is better and even if it wasn't I wouldn't act any different because work comp is a joke. I just ended up burning my own time-like I had any to spare! Then me getting sick and using more time I don't have, my blow dryer catching fire (trivial, I know, but I loved my blow dryer and now that I have hair to use it on....) our TV going out, Ethan getting admitted, Brian getting sick, Hailey and Parker getting sick, the little dog having diarrhea all over the house, the big dogs jumping on the table and eating all of the leftover birthday cake-yep chocolate-and some old lady backing into my husband's car while he was getting food on his way to the hospital, is it any wonder my blood pressure is high???
So beware.
I may be a little quick to overreact right now.
So think before you piss me off.
Because I will punch you in the face.
And enjoy it.
Ps-a little packing tape can fix anything. Even when your diffuser won't fit on your daughter's blow dryer.
But it could happen tomorrow.
Ethan has been back on full feeds since Friday.
His heart rate is back up to high 50's low 60's.
He is tired of hanging out at the CMH, but off oxygen he was only at 87-88, so that has been the only thing keeping him there. They want him to be without oxygen while sleeping and keep his sats above 90. Not sure how soon that's gonna happen. Since we've done the oxygen at home thing before, I'm ready to pack his skinny butt up and head home with some O's rather than wait for him to come down with something else!
They think his seasonal allergies and asthma are what set all of this off, and warned us they expect this to be a bad, bad, very bad spring allergy season! Woo-hoo! Back on an asthma action plan we go. I am going to ask about increasing his Robinul though. Pulmonology was trying to wean him off it, but with the increased secretions, I think he needs it full strength again. The Robinul is used off label to help control secretions-Ethan's drooling-and it really helps.
Whenever he has a little virus or allergy flare up, his skin gets crazy. His eczema acts up and the skin around his GJ gets red and angry. So wound care came by and hooked us up with some fabulous products! Mepilex and Stomahesive powder and Cavilon No-Sting barrier cream. Oh, and a Flexi-trak device to hold his tubing in place and keep it from moving around his stoma and irritating it. We haven't been in the hospital for so long we didn't know about all these new fancy tools and gadgets! Time to make more room in the bald kid's supply cabinet!
I expressed my concern about his heart rate, so Dr Kaine came by Friday afternoon. I was crashed out from working the night before, and the one time my husband didn't wake me up was this time! Dr Kaine is not concerned about the bald kids heart rate, but still hasn't decided whether we are keeping him on the Digoxin or not. What I did not get a chance to ask, and my husband didn't think to, was when do we need to be concerned? They have moved his follow up Cardiology appt from 6 months to 3 months, so if nothing else, I will ask then!
These last two weeks everyone in our house has had a run of illness. It started with me week before last-sinus infection, upper respiratory infection, the start of a little pneumonia. Then Brian two days later, then the bald kid, and finally Hailey and Parker missed school Thursday and Friday. So, as I am taking one kid to the hospital, nursing two other kids, a husband and my own illness, I also worked full time-nights no less-minus the 3 hours late I went in the night E was admitted since my husband was at home sick and I needed to get him settled in the big house before going in to work. But we managed, as we always do. And our older kids stepped up, took care of themselves, and their responsibilities.
Hailey missed VB practice Thursday evening because of this illness that spread through all five of us in our house in 7 days. We kept her home in the thought we did not want to expose her whole team to the illness. She had a tournament on Saturday and we felt missing one practice to rest and get better for her tournament was the best thing to do.
Well, apparently her coach thought she was either playing hooky or that she should have come anyway based on the shitty text she sent her, not sending her a pre-tourney text about arrival time and jersey color, and the way she treated her at the tournament itself. I don't post about certain incidents because I don't know who all reads this, and I don't want to call anyone out or hurt anyone's feelings. This time, I'm done being nice while someone treats my kids poorly. Gloves are off. And whatever I say on here, my husband I will be sharing with her coach, in person. This is not an email or text convo. So you might be asking why I'm posting? Because with all the focus on the way some coaches treat kids badly, I want people to know it can happen in any sport, at any age and we as parents can't keep allowing it. Hailey has missed 3 practices of club ball all season-two for illness-this being one, and one for a visitation. Less than all her teammates. And she's never missed a tournament-never a minute. She made the commitment and she takes it seriously. Hailey went to her tourney by herself Saturday morning because Brian was at the hospital with E and I worked until 0530 and went home to sleep. Yep, she set her alarm, got up, got there at the time she had to text and ask her coach what time to be there, all by herself. Her coach was 10 minutes late.
They had to ref the first game, which Hailey always willingly helps. She line judged. Between games she and another girl agreed to switch, so she went to the bathroom because her nose was running and she needed to pee. Upon arriving back to the bench, her coach attacked her and accused her of shirking her responsibilities. I'm more than a little disappointed the girl whom she had switched line judging with didn't speak up during this. Of course Hailey didn't drop the dime on her, because she's not like that. But wow-awesome team mate! The coach accused her of not having her head in it-in what exactly? Their game hadn't even started. So Hailey, who would never back talk an adult, except her dad or I, apologized and told her that her allergies were bothering her and her brother was in the hospital. At this point her coach told her maybe then she didn't even need to be there. And not because she was worried about her state of mind. Well, for a 16 year old to get herself to her tournament without parents, and while her brother is in the hospital, and with a coach who couldn't be bothered to send her the tourney info, I'd say that says something about that kid's character. So I will be damned if that coach gets to make her feel bad about it. How about you address the tardiness of girls to tournaments, the attitude and arguing with refs which resulted in one girl getting a yellow card from HOA or the general lackadaisical, 'don't want to be there' attitude others have had. So much for believing this coach who told us from day one she doesn't put up with drama. We've got enough real life drama, don't need it from a coach with her own. And I really wonder if she would have treated Hailey that way had one of us been there.
We hate missing any of the kids events, but sometimes that's life. They know it and understand it. It's not fair and neither is life. And if Hailey was shirking her responsibilities, I expect it to be addressed, but those of you who know our girl-know that's probably not likely! And I expect it to be done respectfully, at least that's what we expect from our kids, so it's not too much to ask for it in return.
Sorry for the rant, but I am trying to keep it all together after the shitty month I've had, and this incident just about pushed me over the edge. Me, the one who never lets shit get to her, cried the whole way home from the hospital. I'm done letting people attack my kids. I let it slide in the name of a friendship of my husbands many years ago-and I never should have. I should have gone right across the street and punched her in her big nose and fake mole. Sorry-story for another time.
But between my work comp knee injury-which BTW is better and even if it wasn't I wouldn't act any different because work comp is a joke. I just ended up burning my own time-like I had any to spare! Then me getting sick and using more time I don't have, my blow dryer catching fire (trivial, I know, but I loved my blow dryer and now that I have hair to use it on....) our TV going out, Ethan getting admitted, Brian getting sick, Hailey and Parker getting sick, the little dog having diarrhea all over the house, the big dogs jumping on the table and eating all of the leftover birthday cake-yep chocolate-and some old lady backing into my husband's car while he was getting food on his way to the hospital, is it any wonder my blood pressure is high???
So beware.
I may be a little quick to overreact right now.
So think before you piss me off.
Because I will punch you in the face.
And enjoy it.
Ps-a little packing tape can fix anything. Even when your diffuser won't fit on your daughter's blow dryer.
Thursday, April 4, 2013
Hanging out at the Mercy.
It has been a whirlwind of a week around our house, as usual.
Ethan and I took a trip to Urgent Care on Wednesday afternoon for what I felt was definitely not admission worthy crumminess, but alas, I was wrong. Ethan's virus panel came back positive for only one virus; Coronavirus. Or a freight train version of the common cold. The hangover results without the fun! It causes upper respiratory issues-thus the oxygen needed for sats in the 80's, and gastroenteritis, thus the inability for him to tolerate anything more than Pedialyte right now.
What is really kind of freaking everyone out is that fact that Ethan continues to Brady down, or drop his heart rate. To the 30's. and not just while sleeping. It was pretty chaotic when he got down to 37 and hung there for a while. That low a heart rate gets a lot of people in your room. Fast. While awake he hangs in the low 40's-still pretty concerning. Cardiology was called and they recommended to stop his Digoxin and check a Dig level for toxicity. It's not back yet, but I'm pretty comfortable that's not it. *update: not the Digoxin.
His admission last fall he showed a new 'normal' sinus bradycardia in the low 50's. Now we are even lower than that consistently. I won't lie, it kind of scares me a little.
Is it the illness? Is this his new normal?
What happens when his new normal is in the 20's? Teens?
We don't get really excited about Ethan's illnesses, or we would be crazy. When the time warrants, we react appropriately. But I was chastised by the Urgent Care Dr yesterday for taking him there vs. the ER. She asked what our criteria were for deciding which place to take him. I told her I didn't feel he was sick enough that an admission was in the cards so we chose the UC route. Her concern was -mind you, she has taken care of the bald kid before in the hospital-her concern was us taking him to Urgent Care for a seemingly minor issue and him crump there. Should they have to code him or provide care for him that was more advanced than they are accustomed to, is Urgent Care the right place for him? She admittedly told us Ethan scares her. She's seen him go bad before and did not feel they could safely take care of him in Urgent Care.
Looks like we'll be heading down to the big house from here on out. I get that he makes people nervous, and I sure don't want someone treating him that is afraid of him. He keeps Dr's on their toes, that's for sure, and many have learned you can't take for granted he will follow the norm of any course of treatment. But come on, you're a pediatric urgent care Dr.
Coughs , colds, tummy aches, earaches and sprains may not be all that walks through your doors. Sometimes a really crappy sick kid might. And this time I didn't feel he was that kid. Yet.
It's frustrating, because I feel like maybe I'm reading him wrong, or have become too complacent with Ethan's new norms, that I don't get more excited when I should.
I'm going to talk to his regular pediatrician about her thoughts, and I guess in the meantime all our trips will be to the Emergency Room rather than the Urgent Care.
On the flip side, we sit here and watch his heart rate hang in the low 40's, and his oxygen levels hang in the mid 80's unless he's on a liter of oxygen. All the while one group of Dr's getting excited and another group of Dr's with little to no concerns about these changes.
When should we get concerned? Or when will they?
Ethan and I took a trip to Urgent Care on Wednesday afternoon for what I felt was definitely not admission worthy crumminess, but alas, I was wrong. Ethan's virus panel came back positive for only one virus; Coronavirus. Or a freight train version of the common cold. The hangover results without the fun! It causes upper respiratory issues-thus the oxygen needed for sats in the 80's, and gastroenteritis, thus the inability for him to tolerate anything more than Pedialyte right now.
What is really kind of freaking everyone out is that fact that Ethan continues to Brady down, or drop his heart rate. To the 30's. and not just while sleeping. It was pretty chaotic when he got down to 37 and hung there for a while. That low a heart rate gets a lot of people in your room. Fast. While awake he hangs in the low 40's-still pretty concerning. Cardiology was called and they recommended to stop his Digoxin and check a Dig level for toxicity. It's not back yet, but I'm pretty comfortable that's not it. *update: not the Digoxin.
His admission last fall he showed a new 'normal' sinus bradycardia in the low 50's. Now we are even lower than that consistently. I won't lie, it kind of scares me a little.
Is it the illness? Is this his new normal?
What happens when his new normal is in the 20's? Teens?
We don't get really excited about Ethan's illnesses, or we would be crazy. When the time warrants, we react appropriately. But I was chastised by the Urgent Care Dr yesterday for taking him there vs. the ER. She asked what our criteria were for deciding which place to take him. I told her I didn't feel he was sick enough that an admission was in the cards so we chose the UC route. Her concern was -mind you, she has taken care of the bald kid before in the hospital-her concern was us taking him to Urgent Care for a seemingly minor issue and him crump there. Should they have to code him or provide care for him that was more advanced than they are accustomed to, is Urgent Care the right place for him? She admittedly told us Ethan scares her. She's seen him go bad before and did not feel they could safely take care of him in Urgent Care.
Looks like we'll be heading down to the big house from here on out. I get that he makes people nervous, and I sure don't want someone treating him that is afraid of him. He keeps Dr's on their toes, that's for sure, and many have learned you can't take for granted he will follow the norm of any course of treatment. But come on, you're a pediatric urgent care Dr.
Coughs , colds, tummy aches, earaches and sprains may not be all that walks through your doors. Sometimes a really crappy sick kid might. And this time I didn't feel he was that kid. Yet.
It's frustrating, because I feel like maybe I'm reading him wrong, or have become too complacent with Ethan's new norms, that I don't get more excited when I should.
I'm going to talk to his regular pediatrician about her thoughts, and I guess in the meantime all our trips will be to the Emergency Room rather than the Urgent Care.
On the flip side, we sit here and watch his heart rate hang in the low 40's, and his oxygen levels hang in the mid 80's unless he's on a liter of oxygen. All the while one group of Dr's getting excited and another group of Dr's with little to no concerns about these changes.
When should we get concerned? Or when will they?
Sunday, March 31, 2013
If you 'mustache', Ethan turned 9!
It was all smiles and hairy lips at our house tonight as we celebrated the little bald guy's 9th birthday.
Thank you to everyone who came and the wonderful, fun gifts!
From the Sparkle Paige, Auntie Carissa and Uncle Roberto Ethan will be the best dressed dude at pool therapy in his new trunks and rockin Toy Story beach towel.
From Aunt Kate, Joe, Marissa and Abby he will be entertained for hours with his silly singing chicken!
From Grandma Sharon and Grandpa John he will look so cool in his new Nike kicks!
He won't go hungry thanks to Auntie Beth's gift of two cases of formula and some shopping cash!
He will be showing his school spirit for his big sissy and Bo-Bo with his new Staley Falcons t-shirt!
He will be able to buy a new Taylor Swift concert t-shirt with the cash he got from Grandpa Chuck and Grandma Teresa!
And he will be able to join us all in his new recliner while chillaxin' and watching some Walking Dead! (I only bought him one summer outfit, and should be acknowledged for showing such great restraint-I figured the 47 he already has will get him through the summer. That and Brian threatened me!)
We are blessed and thankful for every birthday we get to celebrate with our special guy, as there was once a time we thought we'd never see nine years old. Ethan is an amazing little guy who has brought such happiness and joy to our lives. We have all learned so much about life and unconditional love from him. He amazes us daily at what he has accomplished against many odds and with many obstacles thrown his way. And with a resilience like no other!
He makes me a better person, and shows me patience and strength I never knew I had. One toothy smile from him with his wrinkled scrunched up little nose makes my world right. To hear his laughter is my sunshine, and to hold him in my arms and have him look into my eyes makes all my worries go away.
We are the lucky ones to have been given our sweet, special boy. Though not without struggles, nothing would we change about our lives with him.
We love you our stinky, bald guy, Ethanator and hope to have many more Happy Birthdays with you!
And yes, this week my hair dryer caught on fire-yep actual flames, albeit small ones, our living room TV shot craps, and I've been sick as heck. Oh, and Ethan's JG has had to be switched out 3 times in the last three weeks due to clogs in the J part, AND we are heading down to The Mercy tomorrow morning for another one! Thank goodness those IR folks like us ;)
now we just gotta figure out what's clogging it!
Abby and Marissa
Ethan's girls-Carly, Hailey and Taylor
Silly Sissy!
Aunt Kate loves me!
Mommy made my mustache cakes
Chillin in my new recliner
My new kicks
Mommy and E
Frankie wanted a 'stache too!
Goofy bo-bo and sissy
Thank you to everyone who came and the wonderful, fun gifts!
From the Sparkle Paige, Auntie Carissa and Uncle Roberto Ethan will be the best dressed dude at pool therapy in his new trunks and rockin Toy Story beach towel.
From Aunt Kate, Joe, Marissa and Abby he will be entertained for hours with his silly singing chicken!
From Grandma Sharon and Grandpa John he will look so cool in his new Nike kicks!
He won't go hungry thanks to Auntie Beth's gift of two cases of formula and some shopping cash!
He will be showing his school spirit for his big sissy and Bo-Bo with his new Staley Falcons t-shirt!
He will be able to buy a new Taylor Swift concert t-shirt with the cash he got from Grandpa Chuck and Grandma Teresa!
And he will be able to join us all in his new recliner while chillaxin' and watching some Walking Dead! (I only bought him one summer outfit, and should be acknowledged for showing such great restraint-I figured the 47 he already has will get him through the summer. That and Brian threatened me!)
We are blessed and thankful for every birthday we get to celebrate with our special guy, as there was once a time we thought we'd never see nine years old. Ethan is an amazing little guy who has brought such happiness and joy to our lives. We have all learned so much about life and unconditional love from him. He amazes us daily at what he has accomplished against many odds and with many obstacles thrown his way. And with a resilience like no other!
He makes me a better person, and shows me patience and strength I never knew I had. One toothy smile from him with his wrinkled scrunched up little nose makes my world right. To hear his laughter is my sunshine, and to hold him in my arms and have him look into my eyes makes all my worries go away.
We are the lucky ones to have been given our sweet, special boy. Though not without struggles, nothing would we change about our lives with him.
We love you our stinky, bald guy, Ethanator and hope to have many more Happy Birthdays with you!
And yes, this week my hair dryer caught on fire-yep actual flames, albeit small ones, our living room TV shot craps, and I've been sick as heck. Oh, and Ethan's JG has had to be switched out 3 times in the last three weeks due to clogs in the J part, AND we are heading down to The Mercy tomorrow morning for another one! Thank goodness those IR folks like us ;)
now we just gotta figure out what's clogging it!
Grandpa Chuck and Parker in disguise
Monday, March 18, 2013
Busy month.
80 degrees and wearing flip-flops last week, hats and gloves tomorrow.
Only in the Midwest.
So last week I get this series of texts from Hailey.
Hailey: mom my stomach hurts. I threw up this morning.
Me: then why did you go to school?
Hailey: I had a test. It hurts around my belly button.
Me: ok. Call me or dad later if it gets worse. Gotta go, at E's appt.
2 hours later.....
Hailey: it really hurts mom.
Me: where? What side?
Hailey: if you are facing me on the right.
That's our smart girls answer.
Me: so you mean your left?
Hailey: I guess so.
Me: can you jump up and down on one foot?
Delay in response here as she tries this at school
Hailey: yes.
Me: you're fine. If its still bad tomorrow we will call dr.
No answer for 30 min or so then this
Hailey: mom. I know what it is. I looked it up. It's peritonitis!
Web MD is a dangerous Internet tool.
Me: you DO NOT HAVE PERITONITIS.
Hailey: then it's my appendix.
Me: no it's not.
Hailey: a hernia?
Me: it's none of the above. I'm going to sleep now. have dad take you to dr tomorrow.
A dr appt, an X-ray, 1 IV stick-which Hailey almost fainted from BTW, oral contrast, a CT of her belly, and a $200 imaging co-pay later, the diagnosis? Constipation. Argh! It was actually quite comical. Aside from the $200.
Ethan had two appointments in the last two weeks-endocrine and ophthalmology.
At Endo Dr Cernich is concerned with E's growth on growth hormone. He has grown about 4 inches in the last two years, but only gained a pound in 3 years. He knows we have him on the GH primarily for the cognitive benefit from the Ch 18 research study, and doesn't want to take him off. But he is concerned that our insurance may not want to keep paying if we don't show some significant growth after this many years. So he had some lab work drawn, an IGF to see if there is a chemical response to the GH, and if so, we should be ok dealing with the insurance.
At the eye appt, Dr Hug was very impressed with his tracking of the light up toy. However, she did determine the drift of his eyes is pretty significant, as well as his nearsightedness. Thus, glasses are in his very near future. The drift could be corrected with surgery, but not something we are willing to put him under anesthesia for just so he stops turning his head to the side to see things clearly. Maybe if he were walking, and having his head turned all the time was dangerous to him running into things we would consider it, but not right now. His maculopathy is still the same, no worse, which is great news.
My pre-op appt was fabulous. Dr Buescher explained my surgery and how she's going to send me home on lots of good pain meds and pain catheters in the surgical site called On-Q catheters-see pic below. Maybe even two on each side depending on how tough it is to get the expander under my pectoral muscle. The On-Q Caths stay in for 5 days then she pulls them in the office.
Craziness? I could go home the same day as my surgery. Yep, you read that right. Same day discharge. IF my pain is well controlled 2-3 hours post-op. Is it weird to ask to stay overnight even if my pain is well controlled?
Parker started track practice and comes home pretty beat every day! They even did some Pilates and yoga exercises last week, and boy was he sore that day. Not sure yet what event he is going to do, he seems to like the hurdles. I don't do hurdles, never could. Legs not long enough, not coordinated enough and the thought of crashing to the ground does not appeal to me. Thank goodness he's more coordinated than I am. We took him shopping for the clothes for his dance this weekend, and he looked so good in the outfit we got him! I can't wait to take pics Friday-will post as soon as I have them. He still hasn't decided where they are going to eat yet. Brian and I told him it would be a good idea to find out what kind of food she likes, that would help.
Hailey's club volleyball team took 1st place Saturday at the Parkville Pow-Wow! We are so proud of all the girls! They played so well together-and of 16 sets only lost one! This was their first medal all season-nothing like it being for first place of a Gold Tournament! Hailey had some very good hits and blocks. We still need to work on her confidence and getting her to swing hard every time. The 18's coach said she would be happy to work with her. We are also going to get her out to some camps this summer. She's come a long way with some hard work. We just have to keep her training after club season is over.
Last week was a very sad one, as one of Ethan's former classmates and the daughter of a fellow Police family passed away in her sleep last weekend. Brian and I were out of town when we got the news, and I wanted to get home as soon as possible and hug our little bald guy. We live with the fear every day that we will walk into his bedroom to get him up for school and he will no longer be with us, so Devin's death hits really close to home. My heart breaks for her parents Chris and Sarah. I can't imagine how we would cope as a family, and my prayers are for their comfort and peace in the dark days ahead without their daughter. With a special needs kid our lives become so entangled as caregivers, our identities as Mom and Dad and even siblings are lost in taking care of our kids who cannot care for themselves. It becomes second nature, habit, as commonplace to program a feeding pump, take apart a wheelchair, put on orthotics and oxygen and hearing aides as it is to breathe for us. We would be as lost as if we lost a limb. Please keep the Millsap family in your thoughts and prayers as well.
And just in case I didn't have enough shit going on in my life, I slipped on a wet floor last Friday morning before I got off work and tweaked my right knee. Yep, my bad knee. Since I woke up that afternoon and my knee was swollen and popping and hurt to put weight on, off to the ER I went. X-rays looked ok, just a little bit of soft tissue swelling. Orders to go home, rest, ice and elevate. After doing that it does feel a little better. But off to employee health tomorrow morning I go and see what they want to do. Brian said he was going to just take me out to pasture and shoot me. Put me out of his misery. Ha! No really, if I go MIA this week, send the cops after him.
Ethan has an appointment with Dr Erica, his dentist, tomorrow, and I'm kind of afraid she will need to pull some stubborn teeth that aren't wanting to fall out on their own. I'm a big baby and don't want to watch, so I'm making Brian go with me. He's not too thrilled either. Then a feeding eval at Mercy Tuesday morning.
So, again, a busy week equating to a busy, busy month.
Only in the Midwest.
So last week I get this series of texts from Hailey.
Hailey: mom my stomach hurts. I threw up this morning.
Me: then why did you go to school?
Hailey: I had a test. It hurts around my belly button.
Me: ok. Call me or dad later if it gets worse. Gotta go, at E's appt.
2 hours later.....
Hailey: it really hurts mom.
Me: where? What side?
Hailey: if you are facing me on the right.
That's our smart girls answer.
Me: so you mean your left?
Hailey: I guess so.
Me: can you jump up and down on one foot?
Delay in response here as she tries this at school
Hailey: yes.
Me: you're fine. If its still bad tomorrow we will call dr.
No answer for 30 min or so then this
Hailey: mom. I know what it is. I looked it up. It's peritonitis!
Web MD is a dangerous Internet tool.
Me: you DO NOT HAVE PERITONITIS.
Hailey: then it's my appendix.
Me: no it's not.
Hailey: a hernia?
Me: it's none of the above. I'm going to sleep now. have dad take you to dr tomorrow.
A dr appt, an X-ray, 1 IV stick-which Hailey almost fainted from BTW, oral contrast, a CT of her belly, and a $200 imaging co-pay later, the diagnosis? Constipation. Argh! It was actually quite comical. Aside from the $200.
Ethan had two appointments in the last two weeks-endocrine and ophthalmology.
At Endo Dr Cernich is concerned with E's growth on growth hormone. He has grown about 4 inches in the last two years, but only gained a pound in 3 years. He knows we have him on the GH primarily for the cognitive benefit from the Ch 18 research study, and doesn't want to take him off. But he is concerned that our insurance may not want to keep paying if we don't show some significant growth after this many years. So he had some lab work drawn, an IGF to see if there is a chemical response to the GH, and if so, we should be ok dealing with the insurance.
At the eye appt, Dr Hug was very impressed with his tracking of the light up toy. However, she did determine the drift of his eyes is pretty significant, as well as his nearsightedness. Thus, glasses are in his very near future. The drift could be corrected with surgery, but not something we are willing to put him under anesthesia for just so he stops turning his head to the side to see things clearly. Maybe if he were walking, and having his head turned all the time was dangerous to him running into things we would consider it, but not right now. His maculopathy is still the same, no worse, which is great news.
My pre-op appt was fabulous. Dr Buescher explained my surgery and how she's going to send me home on lots of good pain meds and pain catheters in the surgical site called On-Q catheters-see pic below. Maybe even two on each side depending on how tough it is to get the expander under my pectoral muscle. The On-Q Caths stay in for 5 days then she pulls them in the office.
Craziness? I could go home the same day as my surgery. Yep, you read that right. Same day discharge. IF my pain is well controlled 2-3 hours post-op. Is it weird to ask to stay overnight even if my pain is well controlled?
Parker started track practice and comes home pretty beat every day! They even did some Pilates and yoga exercises last week, and boy was he sore that day. Not sure yet what event he is going to do, he seems to like the hurdles. I don't do hurdles, never could. Legs not long enough, not coordinated enough and the thought of crashing to the ground does not appeal to me. Thank goodness he's more coordinated than I am. We took him shopping for the clothes for his dance this weekend, and he looked so good in the outfit we got him! I can't wait to take pics Friday-will post as soon as I have them. He still hasn't decided where they are going to eat yet. Brian and I told him it would be a good idea to find out what kind of food she likes, that would help.
Hailey's club volleyball team took 1st place Saturday at the Parkville Pow-Wow! We are so proud of all the girls! They played so well together-and of 16 sets only lost one! This was their first medal all season-nothing like it being for first place of a Gold Tournament! Hailey had some very good hits and blocks. We still need to work on her confidence and getting her to swing hard every time. The 18's coach said she would be happy to work with her. We are also going to get her out to some camps this summer. She's come a long way with some hard work. We just have to keep her training after club season is over.
Last week was a very sad one, as one of Ethan's former classmates and the daughter of a fellow Police family passed away in her sleep last weekend. Brian and I were out of town when we got the news, and I wanted to get home as soon as possible and hug our little bald guy. We live with the fear every day that we will walk into his bedroom to get him up for school and he will no longer be with us, so Devin's death hits really close to home. My heart breaks for her parents Chris and Sarah. I can't imagine how we would cope as a family, and my prayers are for their comfort and peace in the dark days ahead without their daughter. With a special needs kid our lives become so entangled as caregivers, our identities as Mom and Dad and even siblings are lost in taking care of our kids who cannot care for themselves. It becomes second nature, habit, as commonplace to program a feeding pump, take apart a wheelchair, put on orthotics and oxygen and hearing aides as it is to breathe for us. We would be as lost as if we lost a limb. Please keep the Millsap family in your thoughts and prayers as well.
And just in case I didn't have enough shit going on in my life, I slipped on a wet floor last Friday morning before I got off work and tweaked my right knee. Yep, my bad knee. Since I woke up that afternoon and my knee was swollen and popping and hurt to put weight on, off to the ER I went. X-rays looked ok, just a little bit of soft tissue swelling. Orders to go home, rest, ice and elevate. After doing that it does feel a little better. But off to employee health tomorrow morning I go and see what they want to do. Brian said he was going to just take me out to pasture and shoot me. Put me out of his misery. Ha! No really, if I go MIA this week, send the cops after him.
Ethan has an appointment with Dr Erica, his dentist, tomorrow, and I'm kind of afraid she will need to pull some stubborn teeth that aren't wanting to fall out on their own. I'm a big baby and don't want to watch, so I'm making Brian go with me. He's not too thrilled either. Then a feeding eval at Mercy Tuesday morning.
So, again, a busy week equating to a busy, busy month.
Monday, March 4, 2013
March. In like a lion....
In true Midwest March fashion, it's the 3rd of March and we have feet of snow on the ground! I love it! The cold, I could do without.
The end of February was busy for all of us, and March may just outdo it!
We have been getting everything together for the state for Ethan's Lopez Waiver to start, and with that means all of his annual Dr appointments:
Cardiology- Check (see last post for deets)
Hearing and Speech- yep, Ethan still has a significant hearing loss and needs new hearing aids. Got his molds done, just waiting for his MO Health Net to kick in so we can schedule his ABR -Auditory Brain Response -specialized hearing test-to be done and get his aids ordered.
Endocrinology-this week for Growth Hormone check up
Ophthalmology- this week for annual check
Pediatrician- last Thursday for orders for PT/OT eval at Mercy to see if The bald kid needs an OPM-otopharyngeal motility study-or swallow study-to see if he aspirates. If not, we are hoping to get him back in the pool for Aqua Therapy! And either way, an OT eval to see about some intensive feeding therapy.
On a side note, while at the peds, when Dr Russell came in to see E, we had him sitting up on the table and he remained sitting, unassisted, the whole time she examined him and chatted with us! He was so showing off for her, and she loved it!! So she whipped out her phone and pulled up the Taylor Swift/goat video on YouTube and showed it to him! He cracked up, and so did I! Even though it kind of makes fun of his girl-he still thought it was pretty hysterical. If you haven't seen it, do it, it's quite hilarious!
Then on to Pulm and Ortho in April.
Hailey is playing in VB tourneys about every other weekend. Just came home from a big one in Nebraska-not with any medals though. Then Topeka this weekend, the Parkville PowWow on the 16th, and to Springfield, MO the 23rd. Brian is taking her to the Springfield one and I'm staying home with the boys and dogs because it's just too pricey to board the dogs for the weekend, and Harley hates it anyway. And Parker and E will be bored to tears. Hailey is going to Prom with Jonny in Wichita on April 13th, and we got her dress this weekend. I would post pics, but Jonny hasn't seen the dress yet and she doesn't want him to!
Parker has started Track and Field practice with his first meet on the 28th. Not sure yet what event he will be competing in. As practices proceed, the coaches will find his strengths and decide. He came home pretty sore Friday after all the running AND Pilates! Love it! We have his Freshman-eeks Freshman-meeting tomorrow night where we meet the fall sports coaches and Freshman teachers. Parker has decided he wants to go out for football in the fall, so we will meet the coaches and get all that fun info. Practices and camps start as soon as school is out, and are early! Not sure he knows what he's in for-but he wants to, so we will encourage him!
Oh, and Hailey just dropped the news that Parker has asked a girl to the 8th grade dance! She sent him a text pic of her dress, and she, and her dress are super cute! I wondered why he's been showering without being asked a million times recently.
I had my three month follow up at the cancer center last Monday, and after some abnormal lab work, I got to spend a few days being a complete basket case waiting for more labs and a CT of my chest/abdomen/pelvis. It seems my hormones are really high, which in my case is bad news because my cancer was so hormone receptive, and can indicate a recurrence. We had initially planned to do a uterine ablation, but my oncologist nixed that idea after my lab results came back. It seems the best thing to do is start Lupron injections to stop the hormones. I'm waiting to chat with my NP again tomorrow to set up a date to start these. Oh, my CT was negative! Yeah-woo hoo! Thanks my CT peeps and Dr VT-and Carissa for getting me in and done so quick.
The feeling that something else could be brewing after being a year out was an absolutely deflating feeling. I was literally sick waiting for the results and scan. I didn't tell anyone but my hubby, so I don't want anyone to be offended. No reason to scare anyone, and I know that's all I would have done with no real answers!
Tomorrow I have my pre-op appointment with Dr Buescher at KU for my tissue expander surgery in April! I'm excited and nervous. Then Brian and I are taking a quick trip to Denver this weekend. Nothing major, just a low key, relaxing time with some of my favorite relatives!
We have something going on every weekend in March-trip, VB, track meets, more VB, Stinky's 9th bday and Easter, whew! By the time my surgery gets here, I will be glad for the break!!
Brian is doing well, working and taking care of us. I never do post much about him, doesn't mean he isn't important. We aren't big Valentine's Day celebrators-I don't do candy or flowers, so it meant the world to me to come home to a beautiful hand written note from my hubby.
He is excited for his Annual Fraternity dinner in April, and to see some of his brothers. This will be their 25th year since pledging, so they get a special pin. They have a busy weekend planned, and of course it's the same as my surgery! Oh well, I have friends willing to spend it with me in the hospital so he can enjoy his weekend too. My surgery is the first of the day, so I will be in and back to my room early and then resting, so he should be able to slip away that evening. And there's no way I'm letting him stay with me this time-he was miserable last year. One of my partners in crime is already planning to sneak in a flask and some D'Bronx pizza anyway!
Like I said, March is busy for us-will keep you all updated. And just to prove it's never boring in the Rawley household, I'm going to scrub up the vomit spots from the dog. Yes, the cute little bulldog has a thing for laundry, and has thrown up 2 pairs of my underwear and 2 of the baby's socks tonight. I'm just happy he's able to throw them up, and not getting obstructed. Looks like we will be much more aware of making sure our closet doors are closed from here on out.
The end of February was busy for all of us, and March may just outdo it!
We have been getting everything together for the state for Ethan's Lopez Waiver to start, and with that means all of his annual Dr appointments:
Cardiology- Check (see last post for deets)
Hearing and Speech- yep, Ethan still has a significant hearing loss and needs new hearing aids. Got his molds done, just waiting for his MO Health Net to kick in so we can schedule his ABR -Auditory Brain Response -specialized hearing test-to be done and get his aids ordered.
Endocrinology-this week for Growth Hormone check up
Ophthalmology- this week for annual check
Pediatrician- last Thursday for orders for PT/OT eval at Mercy to see if The bald kid needs an OPM-otopharyngeal motility study-or swallow study-to see if he aspirates. If not, we are hoping to get him back in the pool for Aqua Therapy! And either way, an OT eval to see about some intensive feeding therapy.
On a side note, while at the peds, when Dr Russell came in to see E, we had him sitting up on the table and he remained sitting, unassisted, the whole time she examined him and chatted with us! He was so showing off for her, and she loved it!! So she whipped out her phone and pulled up the Taylor Swift/goat video on YouTube and showed it to him! He cracked up, and so did I! Even though it kind of makes fun of his girl-he still thought it was pretty hysterical. If you haven't seen it, do it, it's quite hilarious!
Then on to Pulm and Ortho in April.
Hailey is playing in VB tourneys about every other weekend. Just came home from a big one in Nebraska-not with any medals though. Then Topeka this weekend, the Parkville PowWow on the 16th, and to Springfield, MO the 23rd. Brian is taking her to the Springfield one and I'm staying home with the boys and dogs because it's just too pricey to board the dogs for the weekend, and Harley hates it anyway. And Parker and E will be bored to tears. Hailey is going to Prom with Jonny in Wichita on April 13th, and we got her dress this weekend. I would post pics, but Jonny hasn't seen the dress yet and she doesn't want him to!
Parker has started Track and Field practice with his first meet on the 28th. Not sure yet what event he will be competing in. As practices proceed, the coaches will find his strengths and decide. He came home pretty sore Friday after all the running AND Pilates! Love it! We have his Freshman-eeks Freshman-meeting tomorrow night where we meet the fall sports coaches and Freshman teachers. Parker has decided he wants to go out for football in the fall, so we will meet the coaches and get all that fun info. Practices and camps start as soon as school is out, and are early! Not sure he knows what he's in for-but he wants to, so we will encourage him!
Oh, and Hailey just dropped the news that Parker has asked a girl to the 8th grade dance! She sent him a text pic of her dress, and she, and her dress are super cute! I wondered why he's been showering without being asked a million times recently.
I had my three month follow up at the cancer center last Monday, and after some abnormal lab work, I got to spend a few days being a complete basket case waiting for more labs and a CT of my chest/abdomen/pelvis. It seems my hormones are really high, which in my case is bad news because my cancer was so hormone receptive, and can indicate a recurrence. We had initially planned to do a uterine ablation, but my oncologist nixed that idea after my lab results came back. It seems the best thing to do is start Lupron injections to stop the hormones. I'm waiting to chat with my NP again tomorrow to set up a date to start these. Oh, my CT was negative! Yeah-woo hoo! Thanks my CT peeps and Dr VT-and Carissa for getting me in and done so quick.
The feeling that something else could be brewing after being a year out was an absolutely deflating feeling. I was literally sick waiting for the results and scan. I didn't tell anyone but my hubby, so I don't want anyone to be offended. No reason to scare anyone, and I know that's all I would have done with no real answers!
Tomorrow I have my pre-op appointment with Dr Buescher at KU for my tissue expander surgery in April! I'm excited and nervous. Then Brian and I are taking a quick trip to Denver this weekend. Nothing major, just a low key, relaxing time with some of my favorite relatives!
We have something going on every weekend in March-trip, VB, track meets, more VB, Stinky's 9th bday and Easter, whew! By the time my surgery gets here, I will be glad for the break!!
Brian is doing well, working and taking care of us. I never do post much about him, doesn't mean he isn't important. We aren't big Valentine's Day celebrators-I don't do candy or flowers, so it meant the world to me to come home to a beautiful hand written note from my hubby.
He is excited for his Annual Fraternity dinner in April, and to see some of his brothers. This will be their 25th year since pledging, so they get a special pin. They have a busy weekend planned, and of course it's the same as my surgery! Oh well, I have friends willing to spend it with me in the hospital so he can enjoy his weekend too. My surgery is the first of the day, so I will be in and back to my room early and then resting, so he should be able to slip away that evening. And there's no way I'm letting him stay with me this time-he was miserable last year. One of my partners in crime is already planning to sneak in a flask and some D'Bronx pizza anyway!
Like I said, March is busy for us-will keep you all updated. And just to prove it's never boring in the Rawley household, I'm going to scrub up the vomit spots from the dog. Yes, the cute little bulldog has a thing for laundry, and has thrown up 2 pairs of my underwear and 2 of the baby's socks tonight. I'm just happy he's able to throw them up, and not getting obstructed. Looks like we will be much more aware of making sure our closet doors are closed from here on out.
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