Friday, January 13, 2012
funny moments
Thought I would share a funny moment with my family tonight.
Kailey from the kitchen: You have to remember we have a little miracle baby.
Me in the living room: Yeah and our miracle baby is punching herself in the face right now!
Kailey from the kitchen: I said miracle baby not genius baby.
I thought this conversation was hilarious so I thought I would share it with you all.
Love and kisses,
Rick
Sunday, January 8, 2012
Photo Bomb and Swallow Study
Hello Everyone! Kailey here.
We've had kind of a hectic last couple of weeks. January 3rd, Ellery had a swallow study done at Bingham Memorial Hospital. We were thinking it was possible she was aspirating, and that's why she is having such a hard time getting off of oxygen. What we found: There is a valve in the back of your throat that opens and closes to pass food down your esophagus. For some reason, Ellery's valve is malfunctioning. This is causing "residual" food to stick around, and get stuck in her throat. It causes her to get really raspy, especially after eating solid foods. (Like baby food purees, and baby "puffs".) The speech therapist told us when she sees this issue in adults, they are put on a liquid only diet. That is not a good solution for Ellery; right now is the most important time for her to learn how to chew foods. That helps development with speech, and oral motor skills. The speech therapist said our pediatrician will more than likely refer us to a Pediatric ENT (Ear, Nose, and Throat) and he will most likely perform an endoscopy to see what exactly is going on with that valve. The food that is getting "stuck" where the valve is not releasing it COULD be causing aspiration. Hopefully, if we get this issue taken care of, the oxygen issue will come next.
Other than that, she is doing very well with her helmet. It doesn't seem to bother her too much, and we are starting to see a small improvement on the front of her head, mainly her forehead. She is babbling away, and seems very close to saying "mama" or "dada". (At least I'm hoping!) We have started teaching her baby sign language, since we are assuming she will be delayed in speech, based on everything she has had to go through.
She's also got a birthday coming up in just about a month! I can't believe she will be one! It really seems like the second half has just flown by! We are having a very small birthday party for her, as we are still on pretty strict quarantine. We are not sure if she will be able to eat cake, with all of the food issues we are facing at the moment, but if not, we will find some sort of solution to give her something special.
I recently just made my March for Babies team! March for Babies is a walk through March of Dimes, where you are sponsored, and help fund raise money for March of Dimes. Our team name is "Ellery's Early Birdies", which my friend Kristin helped us think up. (Thank you Kristin!! She was also our first contributor!) So far, our team only consists of Rick and I, but I know a few more people that were interested, and I hope to have a good turnout. I will be posting more about March for Babies leading up to the walk, and what the money that goes to March of Dimes really does. Without March of Dimes, the research that was done for medical advancement to save preemies would not have been completed, and Ellery probably wouldn't be here today. So I am a BIG March of Dimes supporter!
That's about all that has been going on here for us. Still not a lot of snow on the ground here! We've actually had 40+ degree days, which is really unsual unusual for this part of the country in January. Hoping it keeps up! It's nice to have a milder winter! Last year, when Ellery came home in May, it was still only about 50 degrees. Brr!
And now, I leave you with a giant photo bomb, since I am very behind! :)
We've had kind of a hectic last couple of weeks. January 3rd, Ellery had a swallow study done at Bingham Memorial Hospital. We were thinking it was possible she was aspirating, and that's why she is having such a hard time getting off of oxygen. What we found: There is a valve in the back of your throat that opens and closes to pass food down your esophagus. For some reason, Ellery's valve is malfunctioning. This is causing "residual" food to stick around, and get stuck in her throat. It causes her to get really raspy, especially after eating solid foods. (Like baby food purees, and baby "puffs".) The speech therapist told us when she sees this issue in adults, they are put on a liquid only diet. That is not a good solution for Ellery; right now is the most important time for her to learn how to chew foods. That helps development with speech, and oral motor skills. The speech therapist said our pediatrician will more than likely refer us to a Pediatric ENT (Ear, Nose, and Throat) and he will most likely perform an endoscopy to see what exactly is going on with that valve. The food that is getting "stuck" where the valve is not releasing it COULD be causing aspiration. Hopefully, if we get this issue taken care of, the oxygen issue will come next.
Other than that, she is doing very well with her helmet. It doesn't seem to bother her too much, and we are starting to see a small improvement on the front of her head, mainly her forehead. She is babbling away, and seems very close to saying "mama" or "dada". (At least I'm hoping!) We have started teaching her baby sign language, since we are assuming she will be delayed in speech, based on everything she has had to go through.
She's also got a birthday coming up in just about a month! I can't believe she will be one! It really seems like the second half has just flown by! We are having a very small birthday party for her, as we are still on pretty strict quarantine. We are not sure if she will be able to eat cake, with all of the food issues we are facing at the moment, but if not, we will find some sort of solution to give her something special.
I recently just made my March for Babies team! March for Babies is a walk through March of Dimes, where you are sponsored, and help fund raise money for March of Dimes. Our team name is "Ellery's Early Birdies", which my friend Kristin helped us think up. (Thank you Kristin!! She was also our first contributor!) So far, our team only consists of Rick and I, but I know a few more people that were interested, and I hope to have a good turnout. I will be posting more about March for Babies leading up to the walk, and what the money that goes to March of Dimes really does. Without March of Dimes, the research that was done for medical advancement to save preemies would not have been completed, and Ellery probably wouldn't be here today. So I am a BIG March of Dimes supporter!
That's about all that has been going on here for us. Still not a lot of snow on the ground here! We've actually had 40+ degree days, which is really unsual unusual for this part of the country in January. Hoping it keeps up! It's nice to have a milder winter! Last year, when Ellery came home in May, it was still only about 50 degrees. Brr!
And now, I leave you with a giant photo bomb, since I am very behind! :)
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| She was a ladybug for Halloween |
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| Right before we had some professional photos taken |
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| Getting ready to go to the doctor's for her 9 month checkup |
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| Rick and Ellery's baptism day |
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| The cake Janice (Ellery's godmother) got for their baptism |
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| Ellery in the same baptism gown I was baptized in, in 1986!! |
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| Mama and Ellery |
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| Getting better at sitting! Still only lasts a few seconds. |
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| First day in helmet |
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| Sporting owls in her helmet. Rick calls it the "Tron Helmet" |
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| Eating "puffs" |
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| LOVING the jumperoo!! |
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| Look at that hair! |
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| She is a rockstar! |
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| Christmas tree with all the presents and Ellery's Jumperoo |
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| Opening Presents |
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| Not really sure what to do |
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| Loving Violet, the Leapfrog puppy |
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| Kinda getting the hang of this thing |
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| Wow this paper stuff is pretty cool! |
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| Ellery's first Christmas pose |
Sunday, January 1, 2012
Welcome 2012!!!!
To all those who read this,
Happy 2012!!!! It's Rick here writing for the first time in a long time. To catch you all up on our family Kailey and my new year's resolution is to write on here more often. First we have had a busy few months. Ellery is growing so fast, she is as of December 8th she is 26.5 inches and 18 lbs. She is starting to babble with ba's, ma's, and as usual ga's. On the 8th we went to Salt Lake City and stayed with my aunt Ladene because on the 9th we were going to Primary's Children Hospital to see a pulmonalogist. She was seeing the specialist because our doctor was concerned she was still on oxygen. However, we did not find the answers we were looking for after our visit and are still struggling to make sense of her oxygen needs. Ellery also had to be fitted with a helmet to help round out her head. She has a pretty bad flat spot (plagiocephaly) that could lead to cranial deformation, the helmet will help reshape her head.
Then Christmas came in a hurry and we were not prepared for it! We have had a tight budget the past few months and it got expensive quickly. We wanted to buy Ellery the world, unfortunately because of the federal pay freeze (and by federal it really narrows down to just DOE and DOE subcontractors) we could not afford to get her a lot. Lucky for us our friends and family were VERY generous in buying for Ellery. So thank you all for helping make her first Christmas even more special. You all care and love for her so much it really meant a lot to our family.
We got Ellery a jump-a-roo that she loves. She only last 10-20 minutes before she tuckers out and most of the time passes out. My parents got her a kick mat that has a keyboard she can kick that makes sounds. She can also sit up and play it. Ellery is almost sitting she has problems falling over because she is a leaner. I am hoping by her first birthday she will be sitting.
One thing that has been bugging Kailey and I is that a lot of people we know don't know how bad it has been for our little one. People keep trying to shoot rainbow's up our asses. Please be patient with us and realize we are going through a very difficult time and sometimes we do not need to hear how it's going to be ok, we just want someone to really listen, understand, and sympathize with us. Sorry to vent but we have had difficulty dealing with a lot of people trying to explain Ellery's problems.
We are looking forward to 2012 with all the challenges and joys it entails. I hope you all have made your resolutions and keep to them. Kailey and I (more Kailey than I) have a list of resolutions and are already working on keeping them. One of our main resolutions is to become more organized, keep a cleaner clutter free house, de-clutter (ie throw shit away), update blog more frequently, work on getting ready for the march for babies in June (looking for sponsors hint hint), get involved, exercise, and eat healthier. I am sure Kailey will post more about march for babies as the time gets closer.
I wish all our readers a safe and wonderful 2012, thank you all for your thoughts, prayers so on and so forth. I was planning to post videos and pictures but the internet is not working great now. Will try again tomorrow.
Love lots,
~Rick
"Man cannot discover new oceans unless he has the courage to lose sight of the shore"
Andre Gide
Happy 2012!!!! It's Rick here writing for the first time in a long time. To catch you all up on our family Kailey and my new year's resolution is to write on here more often. First we have had a busy few months. Ellery is growing so fast, she is as of December 8th she is 26.5 inches and 18 lbs. She is starting to babble with ba's, ma's, and as usual ga's. On the 8th we went to Salt Lake City and stayed with my aunt Ladene because on the 9th we were going to Primary's Children Hospital to see a pulmonalogist. She was seeing the specialist because our doctor was concerned she was still on oxygen. However, we did not find the answers we were looking for after our visit and are still struggling to make sense of her oxygen needs. Ellery also had to be fitted with a helmet to help round out her head. She has a pretty bad flat spot (plagiocephaly) that could lead to cranial deformation, the helmet will help reshape her head.
Then Christmas came in a hurry and we were not prepared for it! We have had a tight budget the past few months and it got expensive quickly. We wanted to buy Ellery the world, unfortunately because of the federal pay freeze (and by federal it really narrows down to just DOE and DOE subcontractors) we could not afford to get her a lot. Lucky for us our friends and family were VERY generous in buying for Ellery. So thank you all for helping make her first Christmas even more special. You all care and love for her so much it really meant a lot to our family.
We got Ellery a jump-a-roo that she loves. She only last 10-20 minutes before she tuckers out and most of the time passes out. My parents got her a kick mat that has a keyboard she can kick that makes sounds. She can also sit up and play it. Ellery is almost sitting she has problems falling over because she is a leaner. I am hoping by her first birthday she will be sitting.
One thing that has been bugging Kailey and I is that a lot of people we know don't know how bad it has been for our little one. People keep trying to shoot rainbow's up our asses. Please be patient with us and realize we are going through a very difficult time and sometimes we do not need to hear how it's going to be ok, we just want someone to really listen, understand, and sympathize with us. Sorry to vent but we have had difficulty dealing with a lot of people trying to explain Ellery's problems.
We are looking forward to 2012 with all the challenges and joys it entails. I hope you all have made your resolutions and keep to them. Kailey and I (more Kailey than I) have a list of resolutions and are already working on keeping them. One of our main resolutions is to become more organized, keep a cleaner clutter free house, de-clutter (ie throw shit away), update blog more frequently, work on getting ready for the march for babies in June (looking for sponsors hint hint), get involved, exercise, and eat healthier. I am sure Kailey will post more about march for babies as the time gets closer.
I wish all our readers a safe and wonderful 2012, thank you all for your thoughts, prayers so on and so forth. I was planning to post videos and pictures but the internet is not working great now. Will try again tomorrow.
Love lots,
~Rick
"Man cannot discover new oceans unless he has the courage to lose sight of the shore"
Andre Gide
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