Ember has already started to display the qualities that everyone wants in a big sister. Much to the dismay of the cat. I can see where she would be confused that he is a little person. I mean he does way 19 pounds and for the first 8 months of her life, he weighed more than she did! I'll give you some examples of what makes a great big sister and how she meets these requirements!
1) Be loving and caring at all times - This includes sitting on, laying on, and using the cat to push off of when standing.
2) Help out with feeding time - eat goldfish while running around the room and then notice that the cat, as thin as he is, looks like he needs food. Proceed to chase him around the room, goldfish in outstretched hand, trying to get him to take it from you. Never mind the fact that if you DO happen to catch up to him, you hit him in the face with said goldfish!
3) Help out wherever you can - If mommy is cleaning up, try to clean up to. By cleaning up, this includes the cat. And it means that he needs to move from where ever he is so it can be cleaned. This can be done by either patting him on the head or trying, unsuccessfully, to pick him up. Who cares that he still weighs over half of my body weight!
So, I have a feeling that this big sister stuff is going to come SO naturally to her that we have nothing to worry about! (uh huh!) I do have to say that she does really well, most of the time, around other babies. Here's hoping!
Wednesday, September 23, 2009
Thursday, July 2, 2009
New pics!
Just wanted to let everyone know that there are new pictures that have been added to the slide show. I will post an update later!
Monday, May 18, 2009
6 months ago....Thank you
It has been 6 months today since Ember received her Liver Transplant. Though there have been a few bumps along the road, they have been mild and easy to cope with. I think about her donor family every day even though we do not know who they are. I can't imagine living life without her and I am so grateful for everything they did for us. I can't even imagine what they had to go through to save my baby. In the past 6 months Ember has made an amazing amount of progress. She is gaining weight steadily and is really starting to fill out. No more bird legs as Michelle says. :)
It is hard to believe that 6 months ago at this time I was sitting in her ICU room staring at a flat little belly for the first time. It was such a relief to be on the other side of Transplant. Sometime during the night, I cried for my baby and her donor angel. Sometimes, just looking at her, I tear up knowing that she went through more in the first 5 1/2 months of her life than most will go through in a lifetime.
She is now walking with assistance from hands or furniture. I am sure that in a few short days or weeks she will get brave enough to let go and take off on her own. She has never really gotten into the who crawling thing. She takes one or two "steps" of crawling before either rolling the rest of the way or just sitting up. It is amazing that this is where we are today. She is living proof that Organ Donation is the right choice. If you have ever, ever doubted, just look at the pictures on this page.
Thank you to our donor family where ever you are. They sound like such simple words for the sacrifice you made, but they are all we have. We love you from the bottom of our hearts. We keep you and our donor angel in our thoughts and hearts daily.
It is hard to believe that 6 months ago at this time I was sitting in her ICU room staring at a flat little belly for the first time. It was such a relief to be on the other side of Transplant. Sometime during the night, I cried for my baby and her donor angel. Sometimes, just looking at her, I tear up knowing that she went through more in the first 5 1/2 months of her life than most will go through in a lifetime.
She is now walking with assistance from hands or furniture. I am sure that in a few short days or weeks she will get brave enough to let go and take off on her own. She has never really gotten into the who crawling thing. She takes one or two "steps" of crawling before either rolling the rest of the way or just sitting up. It is amazing that this is where we are today. She is living proof that Organ Donation is the right choice. If you have ever, ever doubted, just look at the pictures on this page.
Thank you to our donor family where ever you are. They sound like such simple words for the sacrifice you made, but they are all we have. We love you from the bottom of our hearts. We keep you and our donor angel in our thoughts and hearts daily.
Thursday, March 19, 2009
Meeting new friends is good
Last week when Ember got her labs drawn, everything was alright with the exception of her white blood cell count. It was on the low side so they asked for us to come back this week and get them drawn again. So, that is what we did yesterday. We also were asked to visit with a family who was here from Indiana for a transplant evaluation.
Their little boy has BA and needs a transplant as well. It was nice to get to share Ember's story and hopefully help them feel a little better about Transplant. I think that the first thing that I said to them was that Transplant is scary, but in the end it's worth it. Hopefully seeing Ember as healthy as she is now helped them feel better also. I am so glad that we got to meet them. I really want to be able to help others who are going through this as much as possible. I know that Liver Families and The Patterson's helped us get through the toughest time. Hopefully, we can do that for this family.
Also, I got Ember's labs back today and her WBC is still a little low. It is higher than it was last week, but not where it should be. This could be for any number of reasons. Most likely her medicine or she might have a touch of a viral thing going on. Her transplant coordinator said that when she talks with the Dr's to see what they want to do, she would let us know. For now we just need to keep her clean. Which means keep her away from all the sick people out there!
Also, this is kind of sad, but for the second time in a row she didn't cry when they stuck her to draw blood. She just sat there and watched them do it. Sad because she is 9 months old and getting stuck with a needle is old hat to her. However, I am grateful that she allows herself to let it be that easy. I wish I had that when I was little. Heck, I wish I had it now. I'm still not fond of them. She's happy though and I plan to keep her that way!
Their little boy has BA and needs a transplant as well. It was nice to get to share Ember's story and hopefully help them feel a little better about Transplant. I think that the first thing that I said to them was that Transplant is scary, but in the end it's worth it. Hopefully seeing Ember as healthy as she is now helped them feel better also. I am so glad that we got to meet them. I really want to be able to help others who are going through this as much as possible. I know that Liver Families and The Patterson's helped us get through the toughest time. Hopefully, we can do that for this family.
Also, I got Ember's labs back today and her WBC is still a little low. It is higher than it was last week, but not where it should be. This could be for any number of reasons. Most likely her medicine or she might have a touch of a viral thing going on. Her transplant coordinator said that when she talks with the Dr's to see what they want to do, she would let us know. For now we just need to keep her clean. Which means keep her away from all the sick people out there!
Also, this is kind of sad, but for the second time in a row she didn't cry when they stuck her to draw blood. She just sat there and watched them do it. Sad because she is 9 months old and getting stuck with a needle is old hat to her. However, I am grateful that she allows herself to let it be that easy. I wish I had that when I was little. Heck, I wish I had it now. I'm still not fond of them. She's happy though and I plan to keep her that way!
Monday, March 9, 2009
Much better!
Ember is feeling much better since the stuffy nose incident! She is still a little stuffy in the mornings, but nowhere near as bad as she was. YAY!
I know it has been awhile since I have done an update for her, but I feel like when things are going well, there isn't much to say other than, things are going well. She is happy, healthy, and enjoying life as far as I can tell. She is STILL not trying to crawl at all. She would rather stand. She has started to pull herself up into a standing position if she is sitting up. She hasn't quite figured out how to sit up from a laying down position yet though. Hopefully soon.
I do worry that she is behind, but I also think that she is 9 months old and she's had several surgeries so maybe I shouldn't worry about it. I know that she will do whatever she wants in her own time. Though, at this age on are when signs of autism begin to show up. I think that, for me anyway, that prospect is scarier than transplant. I mean, I know that transplant fixed her. With autism, there is no fix unless you have a million dollars to go to dr's every day and make your own therapy sessions, etc. She has no signs, that I know of, of autism, but I worry. That's what I do.
Anyway, in other news, she is saying "dadda" all the time right now. EVERYTHING is dadda. I may be jading myself, but I don't consider it a true word until she can associate it. So, I am hoping that "mamma" is the first word she associates even though she isn't saying it yet. She says "Ma" or "Ba" every once in awhile, but right now "dadda" is the favorite.
She gets her labs drawn Wednesday and then has her 9 month check up at the pediatrician this Friday. So, we will see what they say other than the fact that she is perfect. Which, we already knew.
Also, we are entering her into a Most Beautiful Baby contest that is put on by a local photographer. The hard part is trying to pick the picture! It's SO hard! I will update you on what happens with that as well. :)
I know it has been awhile since I have done an update for her, but I feel like when things are going well, there isn't much to say other than, things are going well. She is happy, healthy, and enjoying life as far as I can tell. She is STILL not trying to crawl at all. She would rather stand. She has started to pull herself up into a standing position if she is sitting up. She hasn't quite figured out how to sit up from a laying down position yet though. Hopefully soon.
I do worry that she is behind, but I also think that she is 9 months old and she's had several surgeries so maybe I shouldn't worry about it. I know that she will do whatever she wants in her own time. Though, at this age on are when signs of autism begin to show up. I think that, for me anyway, that prospect is scarier than transplant. I mean, I know that transplant fixed her. With autism, there is no fix unless you have a million dollars to go to dr's every day and make your own therapy sessions, etc. She has no signs, that I know of, of autism, but I worry. That's what I do.
Anyway, in other news, she is saying "dadda" all the time right now. EVERYTHING is dadda. I may be jading myself, but I don't consider it a true word until she can associate it. So, I am hoping that "mamma" is the first word she associates even though she isn't saying it yet. She says "Ma" or "Ba" every once in awhile, but right now "dadda" is the favorite.
She gets her labs drawn Wednesday and then has her 9 month check up at the pediatrician this Friday. So, we will see what they say other than the fact that she is perfect. Which, we already knew.
Also, we are entering her into a Most Beautiful Baby contest that is put on by a local photographer. The hard part is trying to pick the picture! It's SO hard! I will update you on what happens with that as well. :)
Monday, February 23, 2009
I can't breathe!
If Ember could talk, that is what she would be saying right about now. She has what appears to be a head cold and, well, she was so kind and generous that she gave it to mommy too. We have both been miserable for the past week. She has been all kinds of stopped up and every time she tried to take a bottle, she would have to stop every few drinks in order to take a breath. The saline drops are a joke!! They do nothing but make her more snotty. Plus, I can't hold her down every hour to give them to her and then suction out her nose. Her poor nose would be too sore and I can't even imagine what her mucous membranes would look like.
She gets SO mad when you use the nose sucker thing on her too. It takes at least 10-15 minutes to calm her down again afterwards. Today has been the first day that she has really started to actually have a runny nose. It wasn't bad at all today, but this morning it was just gross. She was sitting on the floor playing with her blocks before Matt left for work and she looked at me and this big snot bubble came out of her nose!! Blech! Poor thing was so mad when I tried to wipe her face again.
Other than that she has been doing great! So, since we are both grumpy and sick and not feeling good, I don't have a lot more to say. Oh! I did want to let you know to check out my new blog too. (If you are interested....no pressure) It is listed first in the Family and Friends blog list.
She gets SO mad when you use the nose sucker thing on her too. It takes at least 10-15 minutes to calm her down again afterwards. Today has been the first day that she has really started to actually have a runny nose. It wasn't bad at all today, but this morning it was just gross. She was sitting on the floor playing with her blocks before Matt left for work and she looked at me and this big snot bubble came out of her nose!! Blech! Poor thing was so mad when I tried to wipe her face again.
Other than that she has been doing great! So, since we are both grumpy and sick and not feeling good, I don't have a lot more to say. Oh! I did want to let you know to check out my new blog too. (If you are interested....no pressure) It is listed first in the Family and Friends blog list.
Wednesday, February 18, 2009
RIP Dr. Morio Kasai
I just found out today that Dr. Kasai passed away on December 8th, 2008. Click here for his obituary Does the name sound familiar? That's because this is the man who pioneered the Kasai procedure that helps babies with BA. I honestly did not know he was still alive, but suddenly learning of his death has hit me a little harder than I expected. It leads me to think of all of the "what ifs" had this man not ever been born, or not ever gone into medicine, or not ever decided to try to help out BA babies. I wonder, also, if he knew the sheer multitude of lives he has touched. Not just BA babies, but their families, their friends, and anyone else who cares to listen to our stories. I certainly hope that he found joy in his life before his passing. So, today is a bit if a sad day for me, but a happy one as well. I got to have a tiny little piece of this man in my life. I am eternally grateful to him for his accomplishments. Without him, Ember may not be here today. She might not have lived long enough to receive her transplant. So, thank you Dr. Morio Kasai. I am sorry that I did not get to say this to you in person, but I think you now know the magnitude of your one action. Please take care of all of our liver babies who did not make it. I hope you have found peace. Know that our family has with your help.
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