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| From Google Halloween Pictures 2010 |
Monday, November 1, 2010
Sunday, October 24, 2010
Happy Halloween 2010
The "Earl" cousins all visited...
Here's the youngest Earl (well Drake...)
But then a witch decided to visit punishment for the second time on our parked car...remember the first time something hit our parked car?
And Jules is ok. Horrible cough. Probably eats just enough. But happy, as always!
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| From Cousins Visit October 2010 |
Here's the youngest Earl (well Drake...)
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| From Cousin Visit Waren Kirk Only |
But then a witch decided to visit punishment for the second time on our parked car...remember the first time something hit our parked car?
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| From Tree on Car |
And Jules is ok. Horrible cough. Probably eats just enough. But happy, as always!
Tuesday, September 14, 2010
and stepping back
He lost two pounds on the pediatrician's scale today, weighing in at 23 pounds.
so discouraging.
Joy
so discouraging.
Joy
Monday, August 23, 2010
jules news
Jules is doing great.
After a rough vomiting illness that lasted week and left him a pound lighter, he rebounded with a new and exciting and dare-I-say normal interest in solid food!
It is the most heart warming thing in the whole world to see him EAT!
He is doing great off oxygen, but he failed his airplane test and requires oxygen for flying. We are going to try and fly this Friday with Jules and his oxygen concentrator and some nasal cannula, so wish us luck = )
We doubled his prevacid dose (thanks to heidi) and the amount of vomiting is SO much better.
He weighs 24.6 pounds and is chatting up a storm.
We have an appointment with a specialist developmental pediatrician at the end of September and another speech evaluation in September as well.
Joy
After a rough vomiting illness that lasted week and left him a pound lighter, he rebounded with a new and exciting and dare-I-say normal interest in solid food!
It is the most heart warming thing in the whole world to see him EAT!
He is doing great off oxygen, but he failed his airplane test and requires oxygen for flying. We are going to try and fly this Friday with Jules and his oxygen concentrator and some nasal cannula, so wish us luck = )
We doubled his prevacid dose (thanks to heidi) and the amount of vomiting is SO much better.
He weighs 24.6 pounds and is chatting up a storm.
We have an appointment with a specialist developmental pediatrician at the end of September and another speech evaluation in September as well.
Joy
Thursday, July 15, 2010
no more o2: untethered for real
As a result of the sleep study, we now know that Jules doesn't require Oxygen at night!
Friday, July 9, 2010
still no
report from the sleep study.
He had one desat that we know of, but they didn't require him to wear oxygen through the study, unlike last time when they rushed in to put him on it, so that is positive.
Joy
He had one desat that we know of, but they didn't require him to wear oxygen through the study, unlike last time when they rushed in to put him on it, so that is positive.
Joy
Thursday, July 1, 2010
Jules
Jules has had a cold and fever, which means he vomits every time he coughs at night. The nights have been pretty rough going for us.
He saw the eye surgeon and everything looks like it is healing well from surgery. We will go back for one more look in August, just to be sure.
He has the sleep study on Monday, 7/5.
He has a pediatrician visit on July 14.
A follow up to the sleep study on July 15.
A swallow study on July 19
Pulmonary Clinic on July 29
Dermatology Clinic on August 3
I need to schedule another airplane test, some occupational feeding therapy with Keren, and a pre-surgical consult with a plastic surgeon who specializes in pediatric/eye-area plastic surgery. So, more on that later.
He saw the eye surgeon and everything looks like it is healing well from surgery. We will go back for one more look in August, just to be sure.
He has the sleep study on Monday, 7/5.
He has a pediatrician visit on July 14.
A follow up to the sleep study on July 15.
A swallow study on July 19
Pulmonary Clinic on July 29
Dermatology Clinic on August 3
I need to schedule another airplane test, some occupational feeding therapy with Keren, and a pre-surgical consult with a plastic surgeon who specializes in pediatric/eye-area plastic surgery. So, more on that later.
Saturday, June 19, 2010
Day after surgery
Well, despite continuous blood dripping from his nose, Jules looks good. He is in less pain today and is running around the house like a little maniac this morning.
This week he has his sleep study on Tuesday 6/22 and starts little gym on Friday.
This week he has his sleep study on Tuesday 6/22 and starts little gym on Friday.
Friday, June 18, 2010
waiting
Surgery is done. we are waiting for him to wake up.
we have spoken with surgeon and with the anasthesiologist.
Jules has an IV for fluids. He has had some anti nausea meds and narcotics.
Surgery worked for unblocking ducts and it turns out there was some other issue in the nose that the surgeon fixed too.
we have spoken with surgeon and with the anasthesiologist.
Jules has an IV for fluids. He has had some anti nausea meds and narcotics.
Surgery worked for unblocking ducts and it turns out there was some other issue in the nose that the surgeon fixed too.
in surgery now
Jules is in surgery right now.
Scott got to hold him down while they put the mask on for anasthesia.
He is wearing his little hospital gown and hopefully they will come get us and tell us it is over soon.
Scott got to hold him down while they put the mask on for anasthesia.
He is wearing his little hospital gown and hopefully they will come get us and tell us it is over soon.
Thursday, June 17, 2010
surgery tomorrow
Jules is having his tear duct surgery tomorrow.
Check in is at 7am. Surgery is at 9am.
No food all morning, so that should be a bit of a struggle.
He weighed 22 pounds 9 oz at the doctor last week, so he is growing VERY well post tonsil surgery!
Jules has a sleep study tues, 6/22 to make sure the tonsil surgery cured his oxygen needs at night. If he passes, we can say goodbye to oxygen! I'm anxiously crossing my fingers.
Joy
Check in is at 7am. Surgery is at 9am.
No food all morning, so that should be a bit of a struggle.
He weighed 22 pounds 9 oz at the doctor last week, so he is growing VERY well post tonsil surgery!
Jules has a sleep study tues, 6/22 to make sure the tonsil surgery cured his oxygen needs at night. If he passes, we can say goodbye to oxygen! I'm anxiously crossing my fingers.
Joy
Friday, June 4, 2010
Good News!!!
Just came back from Children's and Jules weighed 21.15oz!
He weighed 20 pounds before surgery, so this is a 23.3 gram weight gain a day since the surgery and almost a 2 pound weight gain in one month!
He made it onto the growth chart for 3% for weight, but not on there yet for height.
We are going to continue on Periactin and see about doing another swallow study to see if he is doing better enough to get off the thickener we use to make his food into pancake batter texture.
Joy
He weighed 20 pounds before surgery, so this is a 23.3 gram weight gain a day since the surgery and almost a 2 pound weight gain in one month!
He made it onto the growth chart for 3% for weight, but not on there yet for height.
We are going to continue on Periactin and see about doing another swallow study to see if he is doing better enough to get off the thickener we use to make his food into pancake batter texture.
Joy
Wednesday, June 2, 2010
update
I just got off the phone with Swedish medical in Seattle and scheduled a sleep study for Jules with their pediatric sleep pulmonologist for June 22!
So much better than December.
I am so excited to have found a way around Childrens on this one.
In other news, Jules qualified for speech therapy this morning, which really unsettled me. He has a delay in language receptive skills. So, we will add speech therapy to his feeding therapy at Boyer Clinic.
And we go for a weigh-in on Friday at Childrens hospital to see how his weight gain has been since the surgery.
And we see his pediatrician next wed. for a surgery follow-up.
Jules started Boyer classroom yesterday and was a big fan of preschool. He had 30 minutes to play in a huge gym with fun things to climb and bounce and swing on. He had 30 minutes of snack, where he actually sat down and ate some yogurt. And then 30 minutes of open play in the classroom. Finally, they finished with 30 minutes of music. He was pretty annoyed that he had to sit down for the music part and wasn't allowed to play with all of their toys during that time.
Today is scott's and my 8 year anniversary and this summer is the anniversary for 16 years of being together.
So much better than December.
I am so excited to have found a way around Childrens on this one.
In other news, Jules qualified for speech therapy this morning, which really unsettled me. He has a delay in language receptive skills. So, we will add speech therapy to his feeding therapy at Boyer Clinic.
And we go for a weigh-in on Friday at Childrens hospital to see how his weight gain has been since the surgery.
And we see his pediatrician next wed. for a surgery follow-up.
Jules started Boyer classroom yesterday and was a big fan of preschool. He had 30 minutes to play in a huge gym with fun things to climb and bounce and swing on. He had 30 minutes of snack, where he actually sat down and ate some yogurt. And then 30 minutes of open play in the classroom. Finally, they finished with 30 minutes of music. He was pretty annoyed that he had to sit down for the music part and wasn't allowed to play with all of their toys during that time.
Today is scott's and my 8 year anniversary and this summer is the anniversary for 16 years of being together.
Tuesday, May 25, 2010
classic
So, the sleep study people called me to schedule julian's follow-up sleep study, the one to see if his tonsil removal improved the Apnea situation.
They were asked by our pediatrician to schedule an appointment in one month's time so that we don't keep him on oxygen if it isn't medically needed.
Guess what date they offered me as my ONLY option?
December 2nd.
The lady actually said, "I'm sorry, you are going to hate me for this, but the only date we have is December 2nd."
Grr.
I had to take that date so "I could get in the system."
I'm confident this will take me about twelve hours to unravel and talk to the right people to help me get a date that isn't crazy.
And I know I shouldn't complain when it is Jules who has to wear cannula and have strangers point at his stickers, etc... but I am really ready to not have a full time job scheduling doctor appointments!!!
They were asked by our pediatrician to schedule an appointment in one month's time so that we don't keep him on oxygen if it isn't medically needed.
Guess what date they offered me as my ONLY option?
December 2nd.
The lady actually said, "I'm sorry, you are going to hate me for this, but the only date we have is December 2nd."
Grr.
I had to take that date so "I could get in the system."
I'm confident this will take me about twelve hours to unravel and talk to the right people to help me get a date that isn't crazy.
And I know I shouldn't complain when it is Jules who has to wear cannula and have strangers point at his stickers, etc... but I am really ready to not have a full time job scheduling doctor appointments!!!
Monday, May 24, 2010
Doing well
Jules is off all pain meds and is looking pretty good post surgery. Can't wait to weigh him and find out how much he has grown with the tonsils gone.
Keren (his OT) checked him out and noticed his hyper-extension of his neck while eating is gone. That, plus the fact he can breathe with his mouth closed, drink his bottle without pausing to gasp for air, and isn't snoring... all combine to show me that the tonsil surgery was a success. We need the sleep study to confirm it though, so we can get off the oxygen.
I feel like I'm waking up after a very long sleepy and troubling time and am looking forward to spending my time this week cleaning things up around here and getting our lives kickstarted again.
Jules is now free to do many things for the first time. I will be sure to take lots of pictures of all these "firsts" as he experiences the world.
Joy
Keren (his OT) checked him out and noticed his hyper-extension of his neck while eating is gone. That, plus the fact he can breathe with his mouth closed, drink his bottle without pausing to gasp for air, and isn't snoring... all combine to show me that the tonsil surgery was a success. We need the sleep study to confirm it though, so we can get off the oxygen.
I feel like I'm waking up after a very long sleepy and troubling time and am looking forward to spending my time this week cleaning things up around here and getting our lives kickstarted again.
Jules is now free to do many things for the first time. I will be sure to take lots of pictures of all these "firsts" as he experiences the world.
Joy
Wednesday, May 19, 2010
fever
So, Jules has had an on and off again fever. he had it all last night, but it went away this morning. He also vomited on me yesterday, but had no other symptoms.
Tonight, his temp went up again, but then it quickly went back down again.
Scott is in London and tonight is my first night without him here. I am praying that Jules makes it through the night fever-free and in no pain. I am prepared to be up all night, but hoping I won't be.
Since Jules stopped needing oxycodone, he hasn't wanted to eat any solid foods. I'm hoping that as he starts to feel better and doesn't need tylenol, etc... that he will be comfortable enough to swallow solid foods and we can begin working on getting him to eat.
Goodnight,
Joy
Tonight, his temp went up again, but then it quickly went back down again.
Scott is in London and tonight is my first night without him here. I am praying that Jules makes it through the night fever-free and in no pain. I am prepared to be up all night, but hoping I won't be.
Since Jules stopped needing oxycodone, he hasn't wanted to eat any solid foods. I'm hoping that as he starts to feel better and doesn't need tylenol, etc... that he will be comfortable enough to swallow solid foods and we can begin working on getting him to eat.
Goodnight,
Joy
Monday, May 17, 2010
Celebrating!
Jules has been off Oxycodone for 28 hours!
He is getting by on just the tylenol and doing great!
Eating slightly less than when he felt no pain, but recovering so very well.
We are celebrating with a nice dinner tonight and I am so pleased because Scott is leaving for London on Wednesday and I really hoped Jules would be off the Oxycodone by the time Scott left, so that I didn't have the nights of dosing all on my own.
I wasn't very good at it. Once, I pushed the syringe and missed Julian's mouth by a mile. Instead, my aim directed all the bright red oxycodone to scott's face and hair. It would have been funny if Jules hadn't been in so much pain, but I dont' have the best fine motor skills and so I'm very glad I won't have that job while Scott is away.
And I'm very jealous he is going to London.
Joy
He is getting by on just the tylenol and doing great!
Eating slightly less than when he felt no pain, but recovering so very well.
We are celebrating with a nice dinner tonight and I am so pleased because Scott is leaving for London on Wednesday and I really hoped Jules would be off the Oxycodone by the time Scott left, so that I didn't have the nights of dosing all on my own.
I wasn't very good at it. Once, I pushed the syringe and missed Julian's mouth by a mile. Instead, my aim directed all the bright red oxycodone to scott's face and hair. It would have been funny if Jules hadn't been in so much pain, but I dont' have the best fine motor skills and so I'm very glad I won't have that job while Scott is away.
And I'm very jealous he is going to London.
Joy
Saturday, May 15, 2010
Going longer
Today, Jules went 5/6 hours during the day between oxycodone doses, so I think he's in less pain, which is great. He is pretty exhausted though and taking long naps to recover from the surgery.
going to bed now and hoping for a good night sleep with easy dosing times tonight.
Joy
going to bed now and hoping for a good night sleep with easy dosing times tonight.
Joy
Friday, May 14, 2010
Good news
Today, Jules weighed in at 21 pounds 1oz at the pediatrician!
This is a weight gain of 1 pounds in the past two weeks, which means he gained back all he lost with the surgery and then some!
He also grew in length to 30 inches.
Although, he is still not on any growth chart.... he does get to finally have a forward facing car seat saying goodbye to the infant rear-facing carseat he has had for SO long!
We also got the news today that he can start at the Boyer Clinic in their classroom preschool twice-a-week for 2hours each time the first week of June and we are THRILLED for him! This will be his first time ever being exposed to other children and we can't wait to see him grow in this way too.
Right now, we just got him to bed and Scott is at Children's getting more Oxycodone for the little guy. Unfortunately, he continues to be in a fair amount of pain and these nights are brutal.
Last night, after aiming the oxycodone syringe into his cheek and then scott chasing it instantly with a bottle, we held our breath praying he wouldn't vomit up the meds and when it seemed like things were fine, I turned to Scott and noticed blood smears all over his white t-shirt. Julian's nose was bleeding again and we knew we had 5 minutes to stop it or he would go to the ER. We were able to get the bleeding to stop and finally got Jules to bed, but I was up, wired, and anxious for many hours into the morning = (
Hoping for a much better night tonight to go with all the good news we had today,
Joy
This is a weight gain of 1 pounds in the past two weeks, which means he gained back all he lost with the surgery and then some!
He also grew in length to 30 inches.
Although, he is still not on any growth chart.... he does get to finally have a forward facing car seat saying goodbye to the infant rear-facing carseat he has had for SO long!
We also got the news today that he can start at the Boyer Clinic in their classroom preschool twice-a-week for 2hours each time the first week of June and we are THRILLED for him! This will be his first time ever being exposed to other children and we can't wait to see him grow in this way too.
Right now, we just got him to bed and Scott is at Children's getting more Oxycodone for the little guy. Unfortunately, he continues to be in a fair amount of pain and these nights are brutal.
Last night, after aiming the oxycodone syringe into his cheek and then scott chasing it instantly with a bottle, we held our breath praying he wouldn't vomit up the meds and when it seemed like things were fine, I turned to Scott and noticed blood smears all over his white t-shirt. Julian's nose was bleeding again and we knew we had 5 minutes to stop it or he would go to the ER. We were able to get the bleeding to stop and finally got Jules to bed, but I was up, wired, and anxious for many hours into the morning = (
Hoping for a much better night tonight to go with all the good news we had today,
Joy
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