Friday, December 28, 2012
Thursday, November 22, 2012
Medical Update Post
I have been a terrible blogger..........I sincerely apologize! Maybe that will be one of my New Year's Resolution....ha ha!
Our last major update was late September, so I will do my best to update on all that happened since then....So get ready, hang on tight, put your reading glasses on. and HERE WE GO!
Our last major update was late September, so I will do my best to update on all that happened since then....So get ready, hang on tight, put your reading glasses on. and HERE WE GO!
- Emma's Medical Update:
- Nephrology (Kidney):
- We got to the doctor's office and apparently her doctor was having some sort of pregnancy issues, and all of the other nephrologists were "too busy" to help. Needless to say, we got nothing accomplished at that appointment. The good news is that her last Kidney Sonogram showed that she passed a stone and only has one left.
- Opthalmology
- We got Emma into a new Ophthalmologist. He is wonderful, and to top it off, he is friend's with Emma's surgeon. Emma's strabismus (eye pulling in) is still bad, but her nyastagmus (shaking) is almost resolved. Emma also has some mild near sightedness but nothing to address at his point in time. We are patching again for her strabismus and if it is not any better in a year, Emma will need surgery to correct it.
- Cardiology
- We got approved for Emma's synagis (protection against RSV). Scott, her cardiologist, and I spent hours on the phone with the insurance companies to get this approved. It was no easy task as Emma is "over the age limit", but this Mom does not take no for an answer. Emma will get these shots every month through viral season. As far a cardiac wise, Emma seems to be stable. Her labs look good and we have been able to wean her off of her oxygen during the day. :)
- General Pediatrics:
- Emma's allergies have been terrible lately. It has turned into somewhat of a cold; however, she seems to be holding her own. We took her in to see the pediatrician and her ears and throat look fine, so we are just suctioning her little nose out (not her favorite thing).
- Emma's Therapy Update:
- Physical Therapy:
- Lots of Changes here:
- We ordered Emma a standing frame and AFOs (leg braces) to help with her low lower body muscle tone. Both of these should be in by Christmas. We are anxious and excited at the same time to see how these items help her in the muscle department. Click here to see what a standing frame will look like Emma is doing well with her rolling, sitting, kneeling, etc. She still doesn't "enjoy" her therapy, but she participates....most days: :)
- Speech Therapy:
- Emma is eating like a champ. She is pretty much taking all of her calories by mouth which is AMAZING! The issue we have is with drinking. She wants absolutely nothing to do with drinking, so that is what we are working on the most right now.
- Occupation Therapy:
- Emma is finally wanting to use her hands more. As you can see in the picture above, she loves to play with her stars. She also loves paper and she does a lot of "homework"
- ECI:
- We just got Emma signed up for ECI. She will be seeing an Early Childhood Behavioral Specialist once a week starting in December.
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| Waiting on the Nephrologist |
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| New Ophthalmologist Office |
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| Goofing off at the Cardiologist |
Tuesday, October 23, 2012
Thursday, October 4, 2012
Wednesday, October 3, 2012
Red Balloon Run and Ride/ Team Emma's T-shirts
You have until tomorrow evening to order a TEAM EMMA t-shirt. They are 10.00 each (plus 2.00 if you would like them shipped to you). I will be sending out a chart of who has ordered so far tonight. Please check your messages to make sure your order looks correct. BIG THANK YOU to all of our wonderful TEAM Emma supporters.
Also, you still have time to register for the Red Balloon Run and Ride. If you cannot attend but would like to help the hospital that was so wonderful to Emma you can donate to the HEARTS of FIRE team at: www.redballoonevent.org
RED BALLOON RUN AND RIDE INSTRUCTIONS
Step 1: Go to: http://www.redballoonevent.org/
Step 2: Click on Register
Step 3: Click on Register for the Run
Step 4: Join a Fundraising Team
Step 5: Type Hearts of Fire into the Team Name and hit Search for a Team
Step 6: Scroll down and you should see the Hearts of Fire info
Step 7: Click Join
Step 8: Fill out the form
Let me know if you have any other questions!
If you register for the Red Balloon event please let me know because Scott and I are donating for each person that joins this wonderful event. — with Scott Stewart.
Also, you still have time to register for the Red Balloon Run and Ride. If you cannot attend but would like to help the hospital that was so wonderful to Emma you can donate to the HEARTS of FIRE team at: www.redballoonevent.org
RED BALLOON RUN AND RIDE INSTRUCTIONS
Step 1: Go to: http://www.redballoonevent.org/
Step 2: Click on Register
Step 3: Click on Register for the Run
Step 4: Join a Fundraising Team
Step 5: Type Hearts of Fire into the Team Name and hit Search for a Team
Step 6: Scroll down and you should see the Hearts of Fire info
Step 7: Click Join
Step 8: Fill out the form
Let me know if you have any other questions!
If you register for the Red Balloon event please let me know because Scott and I are donating for each person that joins this wonderful event. — with Scott Stewart.
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| T-shirt design |
Thursday, September 27, 2012
Update on Miss Emma
So I thought I would get on here and type an update of some new things in Emma's life and some exciting things she has done recently.
Emma is enjoying more and more food each day. She has recently started eating pasta primavera baby food which has chunks of pasta, a huge accomplishment for her to eat food with solid substances in it! Yay!! She is also eating the little kids puffs snacks. She is not too sure of them, but once we get it in her mouth she seems to like the taste. We are still working with her on taking in more fluids by mouth. She does not really like that, but it is a work in progress. Small steps are still steps!
Emma recently went to the state fair of Oklahoma. We took her stroller and rain cover (which came in very handy as it did rain when we were there) and she seemed content most of the day. She was in sensory overload seeing all those people and just kept looking at everyone that would come near her! ;) It was so neat to see her expressions of things and watch her looking at people going by her stroller. This was a huge step for her. She usually does not do too well in situations where she has to be in one place, i.e. her stroller, for long periods of time. She did so good though and we were so proud of her. She even got to go and watch the Disney on ice show! She loved the lights and the music until she had a diaper and then it was no fun for a few minutes until we changed her! Hehe! All in all it was a long fun filled day for us and we were so glad she got to partake in that experience and was well behaved!
Emma has been coming to church both Sunday morning and Sunday nights with us! She is doing so well sitting through the whole worship service. She hardly throws fits and just sits contently in the chair in between Sarah and me. We haven't had anymore blasting "PEEK-A-BOO BARN!" app noises occur during the prayer, which is a good thing. I am sure everyone around us is thankful of that. Funny story though, Emma loves playing with hair. She would play with Sarah's hair for hours if we would let her. So one Sunday we are sitting there and they announce for everyone to stand up for the closing song. Well Sarah, Emma, and I stand up and I glance over to see Emma reaching for the woman's hair that is in front of us!!!! (Inside I'm thinking,"OHHHHHHH NOOOO!!!!!" HAHA) Sarah thankfully grabs her hand before she can connect. We laughed about that for probably 20 min! I guess it was Emma's way of "reaching out" to her! :)
Emma also recently made a trip up to her Gramma and Grandpa's house to see the ducks that live on their pond. They have names but I'm not 100% what they were so I won't put them on here. Last I heard, there was a debate about the names because it is thought that they are both male ducks not a male and female. :) Anyways, she got to see the ducks up close which was neat for her due to them coming up and eating out of our hands! Emma, though, was not too sure of the ducks and did whine and cry a little when they came close, but still a neat experience! She also got to ride on Grandpa's tractor, which she, for the most part, enjoyed!
All in all, we have had a lot of fun as a family these past weeks. We are so proud of her for not screaming through all of these new experiences as they could have potentially been very scary for her. Sarah and I are so proud of her and the progress she is making. It may be small steps, but like I said earlier, steps non-the-less.
Prayer Requests:
1) Continue to pray for Emma's future. That God makes her plan known to all the doctors and to us.
2) Continue to pray that she keeps making good strides with her therapy.
Thank you all for the prayers, thoughts, and love that you constantly show our family. We love each of you and are so blessed to have so many caring, wonderful, uplifting people in our lives!
God is good, all the time! And all the time, God is good!
Daddy Scott
(aka- Papa Bear)
Emma is enjoying more and more food each day. She has recently started eating pasta primavera baby food which has chunks of pasta, a huge accomplishment for her to eat food with solid substances in it! Yay!! She is also eating the little kids puffs snacks. She is not too sure of them, but once we get it in her mouth she seems to like the taste. We are still working with her on taking in more fluids by mouth. She does not really like that, but it is a work in progress. Small steps are still steps!
Emma recently went to the state fair of Oklahoma. We took her stroller and rain cover (which came in very handy as it did rain when we were there) and she seemed content most of the day. She was in sensory overload seeing all those people and just kept looking at everyone that would come near her! ;) It was so neat to see her expressions of things and watch her looking at people going by her stroller. This was a huge step for her. She usually does not do too well in situations where she has to be in one place, i.e. her stroller, for long periods of time. She did so good though and we were so proud of her. She even got to go and watch the Disney on ice show! She loved the lights and the music until she had a diaper and then it was no fun for a few minutes until we changed her! Hehe! All in all it was a long fun filled day for us and we were so glad she got to partake in that experience and was well behaved!
Emma has been coming to church both Sunday morning and Sunday nights with us! She is doing so well sitting through the whole worship service. She hardly throws fits and just sits contently in the chair in between Sarah and me. We haven't had anymore blasting "PEEK-A-BOO BARN!" app noises occur during the prayer, which is a good thing. I am sure everyone around us is thankful of that. Funny story though, Emma loves playing with hair. She would play with Sarah's hair for hours if we would let her. So one Sunday we are sitting there and they announce for everyone to stand up for the closing song. Well Sarah, Emma, and I stand up and I glance over to see Emma reaching for the woman's hair that is in front of us!!!! (Inside I'm thinking,"OHHHHHHH NOOOO!!!!!" HAHA) Sarah thankfully grabs her hand before she can connect. We laughed about that for probably 20 min! I guess it was Emma's way of "reaching out" to her! :)
Emma also recently made a trip up to her Gramma and Grandpa's house to see the ducks that live on their pond. They have names but I'm not 100% what they were so I won't put them on here. Last I heard, there was a debate about the names because it is thought that they are both male ducks not a male and female. :) Anyways, she got to see the ducks up close which was neat for her due to them coming up and eating out of our hands! Emma, though, was not too sure of the ducks and did whine and cry a little when they came close, but still a neat experience! She also got to ride on Grandpa's tractor, which she, for the most part, enjoyed!
All in all, we have had a lot of fun as a family these past weeks. We are so proud of her for not screaming through all of these new experiences as they could have potentially been very scary for her. Sarah and I are so proud of her and the progress she is making. It may be small steps, but like I said earlier, steps non-the-less.
Prayer Requests:
1) Continue to pray for Emma's future. That God makes her plan known to all the doctors and to us.
2) Continue to pray that she keeps making good strides with her therapy.
Thank you all for the prayers, thoughts, and love that you constantly show our family. We love each of you and are so blessed to have so many caring, wonderful, uplifting people in our lives!
God is good, all the time! And all the time, God is good!
Daddy Scott
(aka- Papa Bear)
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