Wow time has flown by since the last time that I updated this blog. I am trying to think where to start updating first.
Emily is doing ok. We had a set back and she was back in the hospital almost 2 weeks ago. It was a blessing that she was able to be inbetween infections for about 10 weeks! She is still having good days and bad, but we are coping. In Emily's world she is pumped up about her new swing set that she got. It was so great to see her just light up and be so excited to see then deliver it and then every morning when she wakes up to look out of the window to remind us that it is still outside. We are hoping to have a lot of fun time this summer out in the yard with the swing set.
Ryan is doing good. He is still waiting for Spring AND the warm weather to come around so that he can get out side. There are a lot of outside projects that we need to do this year. Not much else is going on with him. He is busy playing with a very busy little 2 year old.
On my end. Well I did take that new job postion and I gave my notice to my old job this week. It was a hard thing to do, but after the response that I got in turn for the notification I am assured that it was the right one. I am so exicted that I am going to be home every night for dinner and every night to tuck Emmy in bed. I feel like I have won the lottery.
Ryan and I are still working on adding and addition to the family. Things have not been going well on that end. We had our first full cycle this month with the RE. We will see if this months plan worked hopefully with blood work on Monday. We are anxious for a new little one, but understand that it must not be ment to be right now.
The only other things going on around here is that we had the relator come to the house a couple of weeks ago to see if it was in the cards to move and it looks like we are really close, but not sure if we are going to be able to make it swing this summer. We are thinking of waiting until next spring and pay off a bunch of bills and save up a nice down payment. We really want to build, but if the Right house were to come along we would jump on it. It will just be nice to live in Monroe County where we have resources for Emily and her medical needs in the future.
That is about it. Emily is sleeping waiting for the Easter Bunny to come, and I am not far behind her. We hope that everyone is doing well and has a wonderful Easter.
God Bless~
Saturday, April 11, 2009
Tuesday, March 3, 2009
Getting ready for Spring!
I am thinking about what to blog today and nothing is really jumping at me. Emily is home sick with a cold and a fever that I am praying does not turn into a UTI, but we will leave it at that for now and hope that it turns around.
Emily other than having a cold since October, is doing good. We got told by her teachers at the daycare that she is excelling in her class and needs to be challenged more at home. So we got her some flashcards and found out that she knows all of her colors, shapes (even the ones that she can not even say...like octagon and oval) and she knows how to count to five, the letter C &E (for cookie and Emily) and she knows her opposites like up, down, in and out! So we have decided to work on the alphabet and start some early reading skills with phonics and she is only 2! We are going to have to relay on Aunt Becky to come up with some teaching plans for her, as Emily LOVES to learn.
Ryan is doing well. No real complaints. The winter is getting long and I am sure that he is waiting for the day to be able to go outside and work in the yard. We have so much to do outside this year from the wind pretty much ripping up the house this fall and winter.
As for me...well I had a job interview last week with a doctor in a private practice and he offered me a position. I am waiting for the details to be down on paper to officially accept but it should be a great move for Emily. It is M-F, no weekends, holidays, and straight 8- 4:30. The best part of the whole thing is it would be free health insurance for our hole family and a potential raise in my salary! I think that having a straight schedule where I am home to tuck her in at night will help with her stress.
Other news is that I had my appointment with the urology team last week and they gave me clearance to donate my kidney for Emily if we are a tissue match! The doctor was great and said to give him the word when we are getting close and he will start the urology work up that I will need asap to not delay things. I feel so great to know that even though my genes gave her the disease I may be able to give her my kidney and save her life. So I am starting a nutrition program and my running program up again to try and get some weight off again to help keep "Emmy's" new kidney happy.
The only other big thing is that Ryan and I got into the infertility clinic at Strong for next week. So we are going to get some big guns help on having a second child since we have been trying for almost a year and a half and no success on Clomid. Hopefully we will have success and it will all be over before Emily needs that transplant.
Until then we are hanging out and enjoying just being a family!
Emily other than having a cold since October, is doing good. We got told by her teachers at the daycare that she is excelling in her class and needs to be challenged more at home. So we got her some flashcards and found out that she knows all of her colors, shapes (even the ones that she can not even say...like octagon and oval) and she knows how to count to five, the letter C &E (for cookie and Emily) and she knows her opposites like up, down, in and out! So we have decided to work on the alphabet and start some early reading skills with phonics and she is only 2! We are going to have to relay on Aunt Becky to come up with some teaching plans for her, as Emily LOVES to learn.
Ryan is doing well. No real complaints. The winter is getting long and I am sure that he is waiting for the day to be able to go outside and work in the yard. We have so much to do outside this year from the wind pretty much ripping up the house this fall and winter.
As for me...well I had a job interview last week with a doctor in a private practice and he offered me a position. I am waiting for the details to be down on paper to officially accept but it should be a great move for Emily. It is M-F, no weekends, holidays, and straight 8- 4:30. The best part of the whole thing is it would be free health insurance for our hole family and a potential raise in my salary! I think that having a straight schedule where I am home to tuck her in at night will help with her stress.
Other news is that I had my appointment with the urology team last week and they gave me clearance to donate my kidney for Emily if we are a tissue match! The doctor was great and said to give him the word when we are getting close and he will start the urology work up that I will need asap to not delay things. I feel so great to know that even though my genes gave her the disease I may be able to give her my kidney and save her life. So I am starting a nutrition program and my running program up again to try and get some weight off again to help keep "Emmy's" new kidney happy.
The only other big thing is that Ryan and I got into the infertility clinic at Strong for next week. So we are going to get some big guns help on having a second child since we have been trying for almost a year and a half and no success on Clomid. Hopefully we will have success and it will all be over before Emily needs that transplant.
Until then we are hanging out and enjoying just being a family!
Monday, February 16, 2009
Growing up
Things here are good. Emily is growing and hanging in there. We, as a family are starting to accept the fact that this is our life...filled with the unknown of chronic illness...which will in turn never change. So with that large acceptance we are starting to figure out how to cope and how to heal. Ryan and I are truly traumatized with all that Emily has had to go through and all that she is going to have to endure. We only pray that she will rise above it all.
In Emily's world she is growing up so fast. She started riding the crib rails last week calling it her "horsey". She also showed up at our bed a couple of mornings. I was impossible to get some sleep for the fear that she was going to fall out the crib and hurt her self. So on Saturday Emily got her big Valentines Day gift...a new big girl bed. It was very emotional for Mommy because she took down her nursery and made her now childproof Toddler room. I put away all of her baby blankets, sheets, and clothes...I mean all of her clothes. I still had her newborn clothes out! In the end her room is cute. We stayed with the butterfly theme and got a comforter from Target that matches perfectly. Emily is very happy with her new room.
Ryan is good. He is busy working on being a full time Dad and a partime Mom. Because of all of the overtime that I am mandated to work. (That is a whole nother topic.) He is a great dad to Emily...she just loves him. It is getting time to start the seeds for the veggie garden, so I am sure that will keep him busy.
On my end...well...I am working on making some modifications to work. I am working way too much over time and it is taking a huge toll on our family. So I am working on changing it. Other than that I am just trying to keep up with Emily and enjoy every moment that I have with her.
That is about it for now. We will post with more updates. Thanks for stopping in!
In Emily's world she is growing up so fast. She started riding the crib rails last week calling it her "horsey". She also showed up at our bed a couple of mornings. I was impossible to get some sleep for the fear that she was going to fall out the crib and hurt her self. So on Saturday Emily got her big Valentines Day gift...a new big girl bed. It was very emotional for Mommy because she took down her nursery and made her now childproof Toddler room. I put away all of her baby blankets, sheets, and clothes...I mean all of her clothes. I still had her newborn clothes out! In the end her room is cute. We stayed with the butterfly theme and got a comforter from Target that matches perfectly. Emily is very happy with her new room.
Ryan is good. He is busy working on being a full time Dad and a partime Mom. Because of all of the overtime that I am mandated to work. (That is a whole nother topic.) He is a great dad to Emily...she just loves him. It is getting time to start the seeds for the veggie garden, so I am sure that will keep him busy.
On my end...well...I am working on making some modifications to work. I am working way too much over time and it is taking a huge toll on our family. So I am working on changing it. Other than that I am just trying to keep up with Emily and enjoy every moment that I have with her.
That is about it for now. We will post with more updates. Thanks for stopping in!
Wednesday, January 21, 2009
Meeting with the National Kidney Foundation
Today was a wonderful day as far as feeling accomplished. We have been longing for a parents support group locally to have someone to talk to or even just understand where we are in our lives with all of Emily's Kidney disease and the life that it brings with it. I have been talking with our social worker in the Nephrology Clinic about it and today I met with the National Kidney Foundation for the first time to talk about the need for this group.
The meeting went great. They were very much on board, and are willing to help us set up a parents support group all the way down to helping to create a blog AND back it up with finances. Since March is National Kidney Disease awareness month we are going to have our first meeting here in Rochester on March 18!
It is still so unbelieveable that we are finally going to be able to connect with other Kidney parents who know what it is like. We will have someone to relate to and connect with. It is so wonderful that it almost brings tears of relief.
The best part of the whole thing is that they have asked us to help run it! They even offered Patch Adams to come as a speaker for a summer picnic. The ideas are endless, now it is just time to put it into effect.
On our home note...Emmy seems to be holding her own. She is still very "puffy", and has been up at night quite a bit. We are just watching her and holding our own to hopefully get to Boston next week.
Last night Emmy and Mommy made Valentines Day cookies, and tonight we Frosted them. Emily had a blast. I think that she ate more frosting then she put on the cookies. We have pictures...as soon as I figure out how to post them I will put them up.
Hoping everyone is having a wonderful evening.
The meeting went great. They were very much on board, and are willing to help us set up a parents support group all the way down to helping to create a blog AND back it up with finances. Since March is National Kidney Disease awareness month we are going to have our first meeting here in Rochester on March 18!
It is still so unbelieveable that we are finally going to be able to connect with other Kidney parents who know what it is like. We will have someone to relate to and connect with. It is so wonderful that it almost brings tears of relief.
The best part of the whole thing is that they have asked us to help run it! They even offered Patch Adams to come as a speaker for a summer picnic. The ideas are endless, now it is just time to put it into effect.
On our home note...Emmy seems to be holding her own. She is still very "puffy", and has been up at night quite a bit. We are just watching her and holding our own to hopefully get to Boston next week.
Last night Emmy and Mommy made Valentines Day cookies, and tonight we Frosted them. Emily had a blast. I think that she ate more frosting then she put on the cookies. We have pictures...as soon as I figure out how to post them I will put them up.
Hoping everyone is having a wonderful evening.
Sunday, January 18, 2009
A weekend at home
Well it took more then a few days to get things up and going. But hey that is how things go here. What is up and new here?... Not much we are holding steady. Emily is some what the same. She has her good days and her bad, but we are making it through.
Ryan and I are working on cleaning out the house this winter. And yup it is massive cleaning. We are settling to one room a week to clean from top to bottom. It feels great when it is done, but it does make the other rooms we have not touched yet a complete mess! I am sure that we will have an entire truck load for Good will. How much junk can you accumulate in just 6 years!
This weekend has been good we had a family outing on Saturday to the YMCA. We took Emily swimming. She loves it, but we are limited on the times we can go when her mediport is accessed. It was so much fun. We have forgotten what it is like to just hang out and be a family. We are hoping to take her out sledding in the backyard this week if it gets to be a bit warmer for her to actually enjoy it. So keep your eyes out for Emmy's first snow man in the front yard!
Hope that everyone is having a great weekend. Mommy is off to make Muffins again with Emily.
Ryan and I are working on cleaning out the house this winter. And yup it is massive cleaning. We are settling to one room a week to clean from top to bottom. It feels great when it is done, but it does make the other rooms we have not touched yet a complete mess! I am sure that we will have an entire truck load for Good will. How much junk can you accumulate in just 6 years!
This weekend has been good we had a family outing on Saturday to the YMCA. We took Emily swimming. She loves it, but we are limited on the times we can go when her mediport is accessed. It was so much fun. We have forgotten what it is like to just hang out and be a family. We are hoping to take her out sledding in the backyard this week if it gets to be a bit warmer for her to actually enjoy it. So keep your eyes out for Emmy's first snow man in the front yard!
Hope that everyone is having a great weekend. Mommy is off to make Muffins again with Emily.
Sunday, December 28, 2008
And So it begins
Here it is....we thought that this would be a great place to blog about our crazy daily family life aside from Emmy's care page. Stay tuned to the page, I promise to have some new and crazy things posted in the next day or so.
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