Dakin giggling with delight at the popping.
Monday, November 9, 2009
Saturday, November 7, 2009
Bubbles
We had the most amazing morning. It was GORGEOUS here--low-ish 70s, bright blue sky. After a morning of housecleaning, we decided to go outside and play with one of Dakin's birthday gifts. It's a magic bubble wand--it blows giant bubbles.
He loved it. He loved watching them go up and up. He loved letting them pop on his face--he got an enormous sunny smile on when that happened. He even said "pop."
It was a quiet and perfect way to spend part of our morning. Wish I had pictures, but I didn't think I could bubble at the same time I was shooting...ah well. We'll get some later. I hope I never forget today.
He loved it. He loved watching them go up and up. He loved letting them pop on his face--he got an enormous sunny smile on when that happened. He even said "pop."
It was a quiet and perfect way to spend part of our morning. Wish I had pictures, but I didn't think I could bubble at the same time I was shooting...ah well. We'll get some later. I hope I never forget today.
Friday, November 6, 2009
Ok, you need to read this
I stumbled across this this morning, and I feel the need to share it.this out. It's about a little boy who has been diagnosed with terminal cancer, and his one request is to celebrate Christmas this weekend (he has two weeks left). The blogger this link is from is asking people to send Christmas cards. I'm always hesitant about this kind of thing, but this one I feel is legit--heck, they didn't even ask for the cards, a friend of theirs did. We are mailing ours tomorrow--check out the link. All it will cost you is a stamp and some love.
http://katiesdealblog.blogspot.com/2009/11/30-day-giving-challenge-day-5-i-need.html
*Edited to add: a commenter on this post linked an article to snopes.com, so this is legit.
http://katiesdealblog.blogspot.com/2009/11/30-day-giving-challenge-day-5-i-need.html
*Edited to add: a commenter on this post linked an article to snopes.com, so this is legit.
Wednesday, November 4, 2009
Cautiously Optimistic...Revisited
If you've been reading this blog for a bit, you may have noticed one or two feeding posts. If you're not familiar with Dakin's history with eating, here's a condensed version: up until about 2 months of age, Dakin ate like a horse. Then the SMARD started kicking in and he ate less and less. At his 'crash', they put a tube down his nose into his stomach to feed him. After he was trached there was never any talk of a permanent feeding tube (which now I realize I was very lucky with--most trached children are automatically g-tubed as a precaution against aspiration). We went home with the nasal feeding tube and attempted to help him eat properly again. That went on for a long time, until this last January, when they said he was eating enough 'real' food to pull the tube. Sometime after that I decided I would change things up and stop the pandering (TV, books, etc.) to get him to eat.
Bad move.
Yeah. He totally shut down except for the liquids. You can't outsmart this kid.
So we have been mostly liquids for many many moons now, but the nutritionist is fussing at me that he needs more variety and needs to be eating off a spoon. (He feeds himself things like cheese, but he takes tiny bites--he's very protective of his airway, thank goodness.) She has suggested the feeding program at Baylor, which for us would be a month long (HELL to the NO) inpatient stay while they attempt to figure out his issue.
She told me that the program focuses on positive reinforcement. They find something that motivates the kiddos to want to eat (I almost laughed out loud at that...boy howdy, he is hard to please). But I thought we'd try something we have done in the past--reading--except change it up a bit. Hitherto we had used more of a negative reinforcement with him (if you don't eat, we won't turn the page)--and in hindsight I should have known that would never work since he is so stubborn.
So we switched to a positive spin on it. We fished out three of his favorite books (you may remember Rainbow Rob) and set down with him and a cup of pudding. We let him know that this was up to him: if he wanted to see the next page, he could take a bite. If not, he didn't have to.
He ate EIGHT ounces of pudding.
Later on, he ate EIGHT ounces of potato soup.
If you don't have your calculator and are as bad at math as I am, that's SIXTEEN ounces of 'real' food. He also put down 4 oz. of carnation, 4 oz of water and 3 oz. of V-8 fusion juice, and will undoubtedly eat more overnight.
So I'm guessing this is working, at least until he checkmates me again. Keep your fingers crossed--he has never eaten that much 'real' food in one day!!
Bad move.
Yeah. He totally shut down except for the liquids. You can't outsmart this kid.
So we have been mostly liquids for many many moons now, but the nutritionist is fussing at me that he needs more variety and needs to be eating off a spoon. (He feeds himself things like cheese, but he takes tiny bites--he's very protective of his airway, thank goodness.) She has suggested the feeding program at Baylor, which for us would be a month long (HELL to the NO) inpatient stay while they attempt to figure out his issue.
She told me that the program focuses on positive reinforcement. They find something that motivates the kiddos to want to eat (I almost laughed out loud at that...boy howdy, he is hard to please). But I thought we'd try something we have done in the past--reading--except change it up a bit. Hitherto we had used more of a negative reinforcement with him (if you don't eat, we won't turn the page)--and in hindsight I should have known that would never work since he is so stubborn.
So we switched to a positive spin on it. We fished out three of his favorite books (you may remember Rainbow Rob) and set down with him and a cup of pudding. We let him know that this was up to him: if he wanted to see the next page, he could take a bite. If not, he didn't have to.
He ate EIGHT ounces of pudding.
Later on, he ate EIGHT ounces of potato soup.
If you don't have your calculator and are as bad at math as I am, that's SIXTEEN ounces of 'real' food. He also put down 4 oz. of carnation, 4 oz of water and 3 oz. of V-8 fusion juice, and will undoubtedly eat more overnight.
So I'm guessing this is working, at least until he checkmates me again. Keep your fingers crossed--he has never eaten that much 'real' food in one day!!
Sunday, November 1, 2009
Halloween/Birthday Party
Yesterday was a beautiful day--perfect for a birthday AND a holiday (Mommy's favorite!). Dakin had a great birthday, and so I thought I'd show you how his day went.
Getting dressed in Handy Manny costume! I would also like to point out that he is using both of his arms in this pic--he has regained the ability to bring up his right arm, something we haven't seen him do in over a year!
Breathing treatment (the vest jiggles him, that's why the pic is blurry).
After some time in the stander and breakfast, time for up in the 'brrm brrm'--Dakin's favorite thing!
Naptime already?
See? I told you! Beautiful day. Here's Dakin in full Handy Manny regalia. 
Here's the cake Mommy slaved over. Yes, it's Rocket from Little Einsteins. (My hands are still partially pink from the food dye!)
Playing with new toy from nurse Jane--Dakin hits a button and the tools dance up and down.
Later on, after another breathing treatment and more eating, here's Nurse Brenda and Dakin's new Handy Manny book! It has tools to use to help Manny build something...can't remember what now. 
Night night. Dada usually brings him in.
No, I don't want to wake up!
Getting dressed in Handy Manny costume! I would also like to point out that he is using both of his arms in this pic--he has regained the ability to bring up his right arm, something we haven't seen him do in over a year!
Breathing treatment (the vest jiggles him, that's why the pic is blurry).After some time in the stander and breakfast, time for up in the 'brrm brrm'--Dakin's favorite thing!Naptime already?See? I told you! Beautiful day. Here's Dakin in full Handy Manny regalia. Here's the cake Mommy slaved over. Yes, it's Rocket from Little Einsteins. (My hands are still partially pink from the food dye!)Playing with new toy from nurse Jane--Dakin hits a button and the tools dance up and down.Later on, after another breathing treatment and more eating, here's Nurse Brenda and Dakin's new Handy Manny book! It has tools to use to help Manny build something...can't remember what now. Night night. Dada usually brings him in.No trick or treating for us this year--maybe next year. Still, it was a great birthday--he was sung to on multiple occasions and got tons of gifts. Thank you everyone for the birthday wishes!
Saturday, October 31, 2009
Happy 2nd Birthday Dakin!!
Two years ago today, Dakin was born.
The first time I saw his face, it was crumpled with rage at being suddenly pulled from his previous environment. I didn't get to hold him right away, but when I finally did, the moment was magical. Like his grandmother did with me, I counted all his fingers and toes. I felt his tiny soft head and looked into his eyes--surprisingly to me, they were not blue, but an ambiguous brown-grey-green.
Though I didn't know it at the time, I was holding one of the most courageous people I have ever known. I had no idea what we would go through together, and how deep of a bond I would develop with him because of it.
Two years ago today, I learned what love is.
Dakin, your dad and I love you very much--SO much. You are joy, you are light and happiness, you are everything that is good in this world. You are our hero and our life. Thank you for teaching us so much about being brave and loving. We love you!!
I wanted to put better music with this montage, but I just can't get it to work. So turn off the cheesy music, and imagine Harry Connick's 'Heavenly', a wonderful version of 'A Little Help From My Friends' and the best and original 'Bridge Over Troubled Water'.
The first time I saw his face, it was crumpled with rage at being suddenly pulled from his previous environment. I didn't get to hold him right away, but when I finally did, the moment was magical. Like his grandmother did with me, I counted all his fingers and toes. I felt his tiny soft head and looked into his eyes--surprisingly to me, they were not blue, but an ambiguous brown-grey-green.
Though I didn't know it at the time, I was holding one of the most courageous people I have ever known. I had no idea what we would go through together, and how deep of a bond I would develop with him because of it.
Two years ago today, I learned what love is.
Dakin, your dad and I love you very much--SO much. You are joy, you are light and happiness, you are everything that is good in this world. You are our hero and our life. Thank you for teaching us so much about being brave and loving. We love you!!
I wanted to put better music with this montage, but I just can't get it to work. So turn off the cheesy music, and imagine Harry Connick's 'Heavenly', a wonderful version of 'A Little Help From My Friends' and the best and original 'Bridge Over Troubled Water'.
Thursday, October 29, 2009
More on the Pumpkin Theme...The Patch
As you can imagine, accessibility is one of the major issues we have to deal with. It is extremely frustrating to discover that you can't take your child somewhere because of wheelchair inaccessibility. We have, thus far, only met this a few times--and thankfully most people are good about it. I think they can sense I'm going to go nuclear on them if they aren't just as accomodating as they can be...lol. Legally speaking, places of business have to have wheelchair access.
The exception to this is the Pumpkin Patch. Being a seasonal thing, and I'm sure not defined under the Americans with Disabilities Act, there are few 'real' pumpkin patches where we can take Dakin. They are too muddy or you have to ride a truck to access the pumpkins. As the majority of these in our area are on farms, that's us out. So we like to look for alternative patches that could be accessible, namely the churches around here.
Last year we went to a local Baptist church, who had graciously laid pumpkins out around their building and one could take pictures there anytime--these pics are from there.
The church was perfect! The pumpkins were laid out in a nice grassy area surrounded by a RAMP! Ha! The weather was so gorgeous--crystal clear, sunny and cool. It was set up so one could come and take pictures whenever, and the lady who was there told us to take a little pumpkin for Dakin. I didn't get much by way of smiles in the pictures, due to the aforementioned sun. It was a ideal experience, and I'm so glad we got to go.
The exception to this is the Pumpkin Patch. Being a seasonal thing, and I'm sure not defined under the Americans with Disabilities Act, there are few 'real' pumpkin patches where we can take Dakin. They are too muddy or you have to ride a truck to access the pumpkins. As the majority of these in our area are on farms, that's us out. So we like to look for alternative patches that could be accessible, namely the churches around here.
Last year we went to a local Baptist church, who had graciously laid pumpkins out around their building and one could take pictures there anytime--these pics are from there.
This year, sadly, they opted not to do it, and so I was thinking we might not get to go when our Speech Therapist told us about a local Church of Christ who has a patch this year. So we gathered Dakin up yesterday morning and took him.
The church was perfect! The pumpkins were laid out in a nice grassy area surrounded by a RAMP! Ha! The weather was so gorgeous--crystal clear, sunny and cool. It was set up so one could come and take pictures whenever, and the lady who was there told us to take a little pumpkin for Dakin. I didn't get much by way of smiles in the pictures, due to the aforementioned sun. It was a ideal experience, and I'm so glad we got to go.
I need to write these churches a letter and let them know how much these simple pumpkin patches means to us. I am going to have to contact the one we went to yesterday anyway...they have a school, and the thought of private school for Dakin had never even occurred to me. (I'll explain why I'm thinking about this now in a later post.)
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