tag:blogger.com,1999:blog-40148269447856117622024-02-07T18:22:44.276-06:00Ember's StoryJeannie, Jane, Angel, Mommy, etc..http://www.blogger.com/profile/11628880971314832669noreply@blogger.comBlogger31125tag:blogger.com,1999:blog-4014826944785611762.post-90444181368767190952017-05-04T21:21:00.000-05:002017-05-04T21:21:13.359-05:00Worried for her future<br />
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The House just passed a revised healthcare bill which also allows for the ACA to be withdrawn. Yes, I know this bill needs to be sent to the Senate as well. However, this is one step closer to a very scary reality for many many people, myself included. It also comes with the realization that 217 people have just stated that they are alright with the idea that my daughter and so very many like her could die. I know some of you are saying that this is jumping to extremes. Let me tell you about extremes.</div>
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Extremes is when your first child, the child you tried SO very hard for 5 years to conceive is born with liver disease. This disease attacked your child through no fault of yours or your child's. When she is three days old you are faced with the possibility of having to leave her behind at the hospital because she is too sick to come home with you. Extreme is finding out at just 11weeks of age she will have to go through not just one day of testing, but two and then a lengthy and dangerous surgery. Extreme is finding out that your perfect child was born without a gallbladder so they could not even perform the one last test they wanted to. Extreme is watching your child's belly swell to the size of a basketball due to all of the fluid collecting in her abdominal cavity. And then listening to her scream in pain every time her belly was drained. Being told that your child has developed the very infection most common for that type of surgery right away while you sit and just watch because you can do nothing to take away her pain or make her magically better. Extreme is finally getting to come home after almost 20 days in the hospital only to go back a week later for another infection. Then you get to stay a week, come home a week, go back again for a week and so on. After a few months of this, you are told your child is one of the unlucky 33% who will need a liver transplant sooner rather than later. Extreme is asking complete strangers to volunteer to give your daughter part of their liver so she can live and watching the outpouring of how many people just simply say "Yes". Extreme is getting the call that a liver has been found for your tiny little girl and being told just come to the hospital in the morning, no rush...when you know it should have been a rush, but that means the child you are getting the organ from hasn't been removed from life support yet. Extreme is handing your 5 month old baby over to complete strangers for a surgery that lasts 10 1/2 hours only to be told afterwards that your child might not have made it to Christmas by the surgeon, which was only about a month away, because she was worse than they had originally thought. Extreme is 2 months of isolation and continued life saving medication twice a day every day for the rest. of. her. life. just so she can live. Extreme is watching your beautiful almost 9 year old child be ashamed of the scars she has because she was born with a disease that no one can predict, no one can tell her why she contracted, and no one can cure. Transplant is not a cure. It is simply a treatment.</div>
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If this bill goes through, she could be dropped from her insurance along with so many other children with pre-existing conditions. She could be forced to change hospitals or healthcare providers. She could be labeled high risk. All of these things could lead to her eventual death. Just because she was born, someone found it in their heart to save her life when they lost their child, and she lived. That's it. That is all she has done.</div>
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Granted, she could not be dropped from her insurance. They could just raise her deductible and lower her coverage so much that we, as her parents, can no longer afford to pay for her medical care or she is refused from treatment because the Hospital isn't getting paid for her care by the insurance or us.</div>
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Again, all she did was live. Tell me why it's ok for a little over 200 people and the POTUS to say it's ok if she dies. Also, think about this. If you are not ok with abortion but are ok with children (even adults) losing their life because they have a pre-existing condition, you no longer get to call yourself Pro-Life, you just get to call yourself anti-abortion. Plain and simple.</div>
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For those of you wishing to share, please feel free.</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEielvMJcqHLtdEKZHpViccZyWCn7KR5oo6LrOil5Q9SoQD5LamUd981P1qJD4tTcsiHUxQctkPxwdzb6U0g-VR0wSywemLge9rz6QeHlp7GUWnwufmgi1UQqLbBXkKYFq3DuhhDyP4G2S4/s1600/Pretransplant.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEielvMJcqHLtdEKZHpViccZyWCn7KR5oo6LrOil5Q9SoQD5LamUd981P1qJD4tTcsiHUxQctkPxwdzb6U0g-VR0wSywemLge9rz6QeHlp7GUWnwufmgi1UQqLbBXkKYFq3DuhhDyP4G2S4/s200/Pretransplant.jpg" width="200" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjff1Rpc4O5QNRGacK6UfjX_RPEP7nbWrT3AhqpJNA0N7RDRGN_ISCsLciR0SPXB1QJIPo2DRebi9CkD4FQhTW-Pvq2ZwDEyHYUGBEb8qWTO-ppxijMGmQ-CQzTLdzSQYku9WLIipzFUM0/s1600/Transplant1.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjff1Rpc4O5QNRGacK6UfjX_RPEP7nbWrT3AhqpJNA0N7RDRGN_ISCsLciR0SPXB1QJIPo2DRebi9CkD4FQhTW-Pvq2ZwDEyHYUGBEb8qWTO-ppxijMGmQ-CQzTLdzSQYku9WLIipzFUM0/s200/Transplant1.jpg" width="200" /></a></div>
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEil0CddCS9YIvvtkc0mF1jDVTRjC6bArXz0U5ENfn2MqAqg1pDnqAxzwbMV_CtZske1PNB2T4VUK3qxcNUvuTPM7KdHwGToLhZrkm8lJ4WQYhhKuNt9J1shV5oEYSyXijWwYjfUW4Are2c/s1600/Transplant+2.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEil0CddCS9YIvvtkc0mF1jDVTRjC6bArXz0U5ENfn2MqAqg1pDnqAxzwbMV_CtZske1PNB2T4VUK3qxcNUvuTPM7KdHwGToLhZrkm8lJ4WQYhhKuNt9J1shV5oEYSyXijWwYjfUW4Are2c/s200/Transplant+2.jpg" width="200" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgpMQ8rKSy_HXgKwdrd0kUdiXrCXjqLNyCs2t2HKR1Dm4HPKKsEVghr1IuYwl4ISRDqlZiJuRS8LlMTWaN0NIi9OThnC3kojtJF1USfJrvpjY2ZKLOKi1zETZ5Yih7vZ3Zs8ejP18K10Ag/s1600/Ember+now.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgpMQ8rKSy_HXgKwdrd0kUdiXrCXjqLNyCs2t2HKR1Dm4HPKKsEVghr1IuYwl4ISRDqlZiJuRS8LlMTWaN0NIi9OThnC3kojtJF1USfJrvpjY2ZKLOKi1zETZ5Yih7vZ3Zs8ejP18K10Ag/s320/Ember+now.jpg" width="240" /></a>Jeannie, Jane, Angel, Mommy, etc..http://www.blogger.com/profile/11628880971314832669noreply@blogger.com0tag:blogger.com,1999:blog-4014826944785611762.post-30730357238699885132012-11-18T17:24:00.001-06:002012-11-18T17:24:05.530-06:00The gift of life....4 years agoFour years ago today Ember received her gift of life. Her liver transplant came just a few days after her daddy had gone through all of the testing to become her living donor. In that time, a family was faced with the choice of letting their little one save other lives and they said yes. We are very much aware of how important and how difficult their decision must have been. I cannot sit here and say that I know how they felt that day, and still feel today on the 4 year anniversary of their loss, because I do not. I hope to never know what it is like to lose a child and to be faced with the decision they were faced with in 2008. I can say that I look at Ember every day and even though we know nothing really about her donor, I see him in her every day. I see the gift that we have been given. I see the time, hope, love, and happiness we have been given. We have been truly blessed by our donor angel and his family. We continue to teach Ember (and her sister) about love, support, and the true meaning of selflessness. I have to say, however, that I have learned so very much from Ember in these 4 short years. She has taught me the true meaning of compassion. Her heart is so very big and so very open. She has so much love to give and gives it freely. It is hard to imagine that she may not be here today without her new liver. We always try to tell new liver families that we meet that Ember is not the typical liver baby. She really never has been. As I look back over the posts I made in the weeks leading up to Ember's diagnosis I am amazed at how much her little body fought the terrible disease she had. She even responded to medicines that were not even designed to treat her specific liver disease. She never really cried or fussed about how uncomfortable she was. These trends carry through to the little girl she is becoming. She gets sick, but never complains about it really. She is one of the strongest little girls I have ever seen. She loves her sister with all of her heart even if they get on each others nerves. She loves her grandparents, her dog, her kitty, and misses her Pop more than anything. All of these things we wouldn't see had it not been for her donor angel. We love him and truly hope that his family knows exactly how much we appreciate and love them as well. We honor their loved one in how we teach Ember to care for and to love others and in how we will continue to teach her about her gift and the true meaning of sacrifice. We hope that the legacy we leave behind for her donor angel will be felt and heard by many and everyone who comes into contact with her will learn from her. Even if it is in a very small way, even at 4 years old she has so very much to teach us. We are so blessed to have her in our lives.Jeannie, Jane, Angel, Mommy, etc..http://www.blogger.com/profile/11628880971314832669noreply@blogger.com0tag:blogger.com,1999:blog-4014826944785611762.post-14335935126639025672012-11-16T16:59:00.000-06:002012-11-16T16:59:19.350-06:00The call...4 years agoFour years ago today we received the call that would change our lives forever. Around 9:30pm on a Sunday night we received a call from one of the transplant coordinators at Children's telling us that they had a possible liver for Ember. We arrived at the hospital Monday morning and started waiting to receive word about surgery. Here is what I wrote about getting the call. <span style="font-family: georgia,times new roman,times,serif;"><br /></span><br />
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<span style="font-family: georgia,times new roman,times,serif;">"The call....</span><br />
<div class="content apply-wordwrap">
<span style="font-family: Georgia;">Last
night ar around 9:30m we got a call from Children's telling us that
there was a potential liver for Ember and we needed to be at Children's
between 8am and 9am this morning. Her surgery wont be until this
evening if everything goes well. Please say a prayer for the Donor
family and that this is a go. Once I know more, I will make sure to
pass it along."</span><br />
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<span style="font-family: Georgia;"> </span><br />Today Ember is a happy and healthy little girl. We couldn't be more
blessed. Please keep her donor family in your thoughts as I am sure
this is a hard time for them. While we are celebrating her second
chance at life, they are mourning the loss of their little one. <span style="font-family: georgia,times new roman,times,serif;"> </span><br />
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Jeannie, Jane, Angel, Mommy, etc..http://www.blogger.com/profile/11628880971314832669noreply@blogger.com0tag:blogger.com,1999:blog-4014826944785611762.post-31309128920504061272011-11-18T13:34:00.000-06:002011-11-18T13:34:02.870-06:003 years ago...<span style="color: purple;">...today, at this time, I was in a waiting room at St. Louis Children's Hospital, with my family, waiting to receive calls from the OR to update us on Ember's Transplant. I remember the day like it happened yesterday. Everything is permanently etched into my mind. It is hard to imagine that three years ago, she received her gift of life. While it seems like a lifetime has passed since that point, I also realize that it really isn't that long ago. We have SO very much to be thankful for in those short 3 years. She has grown into a beautiful, vivacious, loving little girl. She is happy and healthy and seems to have no worries in the world. Above all else, even if we didn't have those other things, she is <strong><u>still here</u></strong>. </span><br />
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<span style="color: purple;">Her donor angel is thought of every day even though we have never had the chance to know his family. We continue to raise her in a fashion that we would hope her donor family would be proud of. We talk with her continually about what it means to have her gift and try to explain what the true meaning of giving is. I have always tried to be the strong one in the entire Transplant situation, but sitting here typing this blog is bringing tears to my eyes. (That means you have to forgive typos! I can't see the screen here!) It's hard not to tear up when I think of everything she has been through in her short little life. She continues to be one of the strongest people I know. </span><br />
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<span style="color: purple;">The further out from Transplant you get, the more relaxed you get. This means meds are missed, I don't panic if sanitizing gel isn't attached to my hip at all times, and I chalk certain things up to the old say "Schtuff happens". One thing that hasn't changed is the feeling of gratitude, an over abundance of love, and a realization of how blessed we are. We have our baby when I know many who do not, far too many who do not. We have come SO very far in such a short time. Ember now has a beautiful little sister that she adores and she is no longer allergic to peanuts. She is doing phenomenal in preschool and loves to spend time learning. Reading is one of her favorite things to do, so we thought that we would donate books to Children's this year to commemorate her transplantiversary. Ember approves. :) </span><br />
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<span style="color: purple;">It's hard to believe that we went from this: </span><br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhQQSSCLWHAVAtddVJ1w9y6ry47t7eDRSlHcbQOhmvLcpyCKjuklnkeIQEx8ZTUALyl1jatBQLSW3u2c7-cFNH2zOKyOAn8ShDvXSLNgdsCwnEnbTxZa-OGXCP8ax3fcH9qTBqm5Jdt680/s1600/IMG_0414.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" hda="true" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhQQSSCLWHAVAtddVJ1w9y6ry47t7eDRSlHcbQOhmvLcpyCKjuklnkeIQEx8ZTUALyl1jatBQLSW3u2c7-cFNH2zOKyOAn8ShDvXSLNgdsCwnEnbTxZa-OGXCP8ax3fcH9qTBqm5Jdt680/s320/IMG_0414.JPG" width="320" /></a></div><br />
<span style="color: purple;">To this:</span><br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj0oAGLsbZGBLYaXTTN5CF7THQQnKSgigEwthKRvqVPnDOE8xu44BVWXkAdLuOu9sVBHQ100xHzpb1fpAeozpT_YL9pPXQygpmJebgMj1CzP6XlXipNZWb_t4LXmxYRiMr_0Ca080pZj84/s1600/sunglasses.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" hda="true" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj0oAGLsbZGBLYaXTTN5CF7THQQnKSgigEwthKRvqVPnDOE8xu44BVWXkAdLuOu9sVBHQ100xHzpb1fpAeozpT_YL9pPXQygpmJebgMj1CzP6XlXipNZWb_t4LXmxYRiMr_0Ca080pZj84/s320/sunglasses.jpg" width="320" /></a></div><span style="color: purple;">in those three years!</span><br />
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<span style="color: purple;">For those of you still waiting for "The Call", don't give up hope. We are here with you and waiting to welcome you to the other side of transplant. We hope and pray that your will have the perfect gift at the perfect time. </span><br />
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<span style="color: purple;">My Mother -In - Law found a poem that I would like to leave with. I think that it absolutely beautiful and says all the right things. </span><br />
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MAY GOD bless all donor families and the precious and loving memory of all donors, for they who give the Gift of Life in so doing demonstrate a deep and very profound understanding of another of God's most perfect gifts to mankind: the Gift of Love. <br />
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Without the Gift of Love, the Gift of Life through organ donation could not and would not be possible. May all recipients receive the Gift of Life in the same manner and spirit in which it was given: with love and compassion. <br />
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May all recipients continue to privately and publicly display their gratitude for this precious gift, now and forever . <br />
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May all recipients share the Life and the Love of this gift, and use it to make meaningful and lasting contributions to society and humanity. <br />
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May all recipients live life to the fullest each and every day, and in so doing pay loving tribute to their donors and donor families. <br />
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May all recipients do more than merely say thanks, may they be given the strength, courage, wisdom and direction to do thanks through their actions, their deeds and their accomplishments, and by their everyday deportment, at all times showing honour and respect for donors and donor families, who so lovingly and selflessly gave the Gift of Life. <br />
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May all recipients seek, find, understand and fulfil the purpose for which they have been so graciously chosen to receive this special gift. <br />
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To all donor families and the memory of all donors, God bless you. Thank you, we love you. Thank you for the Gift of Life.Jeannie, Jane, Angel, Mommy, etc..http://www.blogger.com/profile/11628880971314832669noreply@blogger.com1tag:blogger.com,1999:blog-4014826944785611762.post-15032603247311176152011-07-07T09:47:00.000-05:002011-07-07T09:47:11.770-05:00Three, Three, Three......<span style="color: purple; font-family: Georgia, "Times New Roman", serif;">Since Ember has turned 3, she tells everyone! I mean everyone! Even if they don't ask her how old she is! It's cute, as is most of the things that she does. However, three is turning into a very trying time with and for her. I know she is trying to exert her independence, but she is getting into SO much trouble! And the fit throwing is SO over the top. She has always been a drama queen when it comes to certain things, but now it is in full force! And I mean WOW! Also, some of the things she comes up with are insane! I am sure she is picking them up from kids at school, but still! Ugh! What happened to my sweet little girl?! She even got into big trouble at school yesterday which rarely happens. Suddenly she isn't listening to teachers and talking back to them! I have no idea what I am going to do with her! </span><br />
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<span style="color: purple; font-family: Georgia;">On a better note, however, she does so good with her sister now that they are both going to preschool on the same days. The teachers have told me that Ember is so very sweet to her sister when they are on the playground together. And, I have to admit, 99% of the time they are very good with each other at home too. However, there are times when Sissy gets tired of Ember and wants to be left alone. Ember hasn't learned when that is yet so she end's up getting scratched, pushed, or both! Most of the time she listens to me when I tell her that Sissy wants to be left alone, but three year olds will be three and sometimes she has to learn on her own! I guess this is true with every age, but it seems worse with three! </span><br />
<br />
<span style="color: purple; font-family: Georgia;">Though, Sissy is picking up on the behavior and seems to be trying to go through the three stage at 19 months! Do you think I will get lucky and she will be well over it when she actually hits three? Hey! I can dream can't I?</span>Jeannie, Jane, Angel, Mommy, etc..http://www.blogger.com/profile/11628880971314832669noreply@blogger.com1tag:blogger.com,1999:blog-4014826944785611762.post-30192604194269840112011-05-31T09:26:00.000-05:002011-05-31T09:26:38.512-05:003 years old!<span style="color: purple; font-family: Georgia, "Times New Roman", serif;">That's right, 3! Can you imagine? This tiny, yellow baby that we brought home from the hospital is now a perfectly happy and relatively healthy 3 year old?! Me either! I also can't believe how much Ember has grown over the past year. Not just physically, but developmentally as well. She is incredibly smart! Way too smart for our own good. </span><br />
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<span style="color: purple; font-family: Georgia;">She loves preschool and loves to play with sissy. However, the terrible three's set in about 2 months early and they rear their ugly head every day! If mommy makes it to her 4th birthday, it will be a miracle! ;) </span><br />
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<span style="color: purple; font-family: Georgia;">We had a small party for Ember yesterday at her Maw Maw and Paw Paw's house with just family. Unfortunately, she wasn't feeling 100%, but I think she had a great time! She kept telling everyone she could that she wanted her ball pit at her party. That was something easy to do since the ball pit lives at Maw Maw and Paw Paw's house. We brought it outside for her to play in and she loved it. That is one of the best presents she has ever gotten. She still loves to play in it. And, now, she plays in it with her sister. It's great! </span><br />
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<span style="color: purple; font-family: Georgia;">She is getting to be such a little girl now rather than a baby. She tells us, most of the time, what she likes and doesn't like. She comes up with the funniest things sometimes, even when she is being a bit on the naughty side. She told me the other day, after I told her to do something, "I'm a little cranky right now."! It made me laugh, but it was finny that she came up with that and thought it would get her out of doing what I had told her to do. She figures things out so quickly too. She knows how to use the computer already and wants to be on it anytime mommy and daddy are on it. I told daddy that he was going to have to build her a computer of her own so she can play her own computer games with us. :) I think she would love that!</span><br />
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<span style="color: purple; font-family: Georgia;">She is going to be a busy girl this summer. She is starting a tap/ballet and tumbling class next week as well as swimming lessons. She is going to love the swimming lessons! I hope she likes her dance class. I know she loves to dance around the house and be silly, but it will be interesting to see how she does with an actual structured class. We also plan on spending a lot of time outside this summer so the girls can wear each other out! :) I can only hope that as the next year goes on, she continues to grow in spirit, compassion, and overall well being. I have no idea what the coming year holds, but I am sure it is going to be as enjoyable and go by as quickly as the last three have gone. </span>Jeannie, Jane, Angel, Mommy, etc..http://www.blogger.com/profile/11628880971314832669noreply@blogger.com1tag:blogger.com,1999:blog-4014826944785611762.post-31286772645168737782011-03-28T21:59:00.000-05:002011-03-28T21:59:59.229-05:00Home away from home....<span style="color: purple; font-family: Georgia, "Times New Roman", serif;">First of all, I know that I am such a bad Liver mommy as far as the updates go! I hadn't realized that the last update was in December! Ember has been doing relatively well since the last update. We did have an overnight stay a few months ago at Children's for about of pneumonia. Even though we hadn't been on the floor with her since she was 8 months old, it was still familiar and it was like we were visiting our long lost home.</span><br />
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<span style="color: purple; font-family: Georgia;">Well, Wednesday night we visited our home away from home again. Ember came home from preschool and had some blood in her stool. She also had diarrhea with it. We called the GI Dr. on call and when I talked to him, I had originally thought that it was blood in her urine so he told us that we could wait until the morning and take her to see the pediatrician. About 30 minutes later, she went again and I knew it was stool. So, I made the decision to take her to the ER. My mom rode with us and dad took Autumn. Ember was already SO very tired on the way up to the ER, but she fought her sleep. Of course, once we arrived at the ER there was no way she was going to calm down and go to sleep. Matt met us there and after we checked her in we noticed that the ER was very crowded. </span><br />
<br />
<span style="color: purple; font-family: Georgia;">Once we sat down we were told by some people who were there that they had been there for two hours already. Ember went to the bathroom several times when we were in the ER waiting room. Then we were told that the wait was up to 4 hours! Needless to say it was not a happy wait for us, but she needed to be checked out. We got back into an ER room at 12:30am. We had arrived at the ER at 8:15pm! They ran labs and wanted for her to give them a sample. We tried to get her to go again, but by then she was exhausted and of course she didn't give them one. We waited for her labs to come back to make sure all of her numbers were good. They finally told us that they were going to keep her at around 2:30am. Ember had fallen asleep on daddy and I was sitting in the chair falling sleep too. They let us sleep actually until her room was ready at 4:30am. So, we got to her room, got her in bed with me and we all promptly fell asleep. </span><br />
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<span style="color: purple; font-family: Georgia;">Of course when you stay at Children's, you get to see a lot of Dr's! So, around 6ish they started coming in. Most of the time I was awake, but sometimes I am sure they thought I was talking crazy. Ember actually did really well with all of the blood pressure, listening, and temperature taking they did. She also got the hang of pushing her IV pole around her room by herself pretty quickly. They pumped her full of fluids and Thursday all day she had no more blood in her stool. So, we took naps, ate badly, and watched a lot of sprout while she wanted to be held a lot. She never acted like she felt bad, but I am glad they decided to keep her just in case. We did get to come home Friday which was good. Autumn stayed with Grammy J while we were in the hospital and needless to say I missed her. Ember did too. She kept asking about her sissy and if she would see her when she went home.</span><br />
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<span style="color: purple; font-family: Georgia;">Since we have been home she has been playing and running around like her normal self. She has been wanting to play outside, but the lovely snow we just got on Saturday has kind of dampened that. Hopefully spring will hurry up and bring a few warm days so my little ones can get some good park time in! Ember loves outside time and I can't wait to see how her and Autumn play together at the playground. </span><br />
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<span style="color: purple; font-family: Georgia;">We are going to get her labs done again later this week. Hopefully there will be nothing more to report. I will try to give you more updates! I am sure there will be plenty once the weather warms up! Oh! And as soon as she starts her dancing and tumbling class! Can't wait!</span>Jeannie, Jane, Angel, Mommy, etc..http://www.blogger.com/profile/11628880971314832669noreply@blogger.com1tag:blogger.com,1999:blog-4014826944785611762.post-86199785614619810172010-12-16T23:55:00.000-06:002010-12-16T23:55:54.928-06:002 years and counting...<span style="color: purple; font-family: Georgia, "Times New Roman", serif;">I am seriously slacking! I missed posting about an very important event in Ember's life. Her two year transplant anniversary. So, here is a catch up on that as well as a few other things that have been going on since then.</span><br />
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<span style="color: purple; font-family: Georgia;">November 18, 2010 marked 2 years since Ember received her life saving gift. It was a very special day for all of us. I silently cried that day knowing how truly blessed we are. I cried because I want to much for her to know her donor family, but I also cried for them knowing how hard it must be for them this time of year. As I have posted earlier, they moved without leaving a forwarding address with the organ donation agency so we have no way of contacting them. However, I do think that I know who is her donor and was very tempted this year to try to contact them. I did decide to wait in the hopes that one day we would hear from them. I also decided that contacting them on my own would be a good idea at another time in the year. At this time it might just be too hard on them. Also, I keep thinking to myself, "What if I'm wrong?". I would hate to bring more pain to a family than they already have. </span><br />
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<span style="color: purple; font-family: Georgia;">Last year we decided that every year for Ember's anniversary we would get together as a family and go out to a restaurant to celebrate. We aren't going to do presents or anything like that since, lord knows, the child has more toys and things than she already knows what to do with. So, this year my mom made green colored white chocolate lollipops that were in the shape of an awareness ribbon for everyone who came to dinner. They were yummy! Ember thoroughly enjoyed hers. I made Ember a cake that was in the shape of an awareness ribbon as well. Once she saw that, eating anything else went out the window. The child has the biggest sweet tooth! And Great Grandma Lola just might have gotten her a present anyway. It was a cute little snow globe. Ember loves it. She is still carrying it around the house and asking me to shake it up for her on a daily basis just about. It was nice to visit with family and celebrate how blessed we have been. </span><br />
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<span style="color: purple; font-family: Georgia;">Since then, Ember has help us celebrate her sister's 1 year birthday. (6 days after her anniversary) She is also really starting to get into this whole Christmas thing. She loves all of the decorations. She even helped Mommy, Grammy J, and Bob decorate the tree this year. Amazingly it has remained in tact. Ember even guards the tree from her sister right now. I sometimes hear her saying "Almond! No, No" and then she claps her hands twice. Yes, she calls her sister Almond. I guess Autumn is just too hard for her to say. It makes me smile. :) She is very interested in the neighbors blow up snowman so we were gifted a blow up Santa for her to look at as well. She keeps asking us "No pop?" which means that she is asking whether the Santa will pop or not. We keep repeating "No, Santa won't pop" like broken records. </span><br />
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<span style="color: purple; font-family: Georgia;">Unfortunately, a week ago we went to the ER with her because she developed some alarming symptoms in the span of about two hours. She had some issues with drainage from her eyes and in a matter of two hours she developed a fever of 101.9, a horrible cough, and she was extremely pale. While I called the Dr's exchange she sat on Maw Maw's lap and complained that her eyes were hurting. As I was on the phone with the Nurse from the exchange, she told Maw Maw that her head was hurting also. So, the nurse told us just to take her to the ER. So, at 9p.m. at night we were heading to the ER. When we got there, she was still running a horrible fever so they had us take her jammies off of her. They did blood work, a chest X-ray, a nasal swab (which made her OH so happy - did you sense the sarcasm?) and looked in her ears. They told us that her ears were fine and that her chest x-ray and blood work were showing what appeared to be a virus. We luckily got to come home. Over the weekend the cough got worse, but the eyes and fevers got better. However, she lovingly shared her virus with her sister. </span><br />
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<span style="color: purple; font-family: Georgia;">After going to see the pediatrician with both girls on Tuesday it seems that Ember now has an inner ear infection as well. Her first, and only I hope, ever. Her sister has the virus, but not as bad. Antibiotics for Ember and eye drops for baby sissy. Now, mommy and daddy have it too. I know that I am always telling her to share, but this is one thing she could have kept to herself. </span><br />
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<span style="color: purple; font-family: Georgia;">Hopefully we are all on the mend and will be good by this weekend. I want to try to take them to see Santa. Last time we tried to get pictures, it didn't work out so well. We will see what happens this time! </span>Jeannie, Jane, Angel, Mommy, etc..http://www.blogger.com/profile/11628880971314832669noreply@blogger.com0tag:blogger.com,1999:blog-4014826944785611762.post-25375553193707496032010-10-22T12:35:00.000-05:002010-10-22T12:35:26.657-05:00Our lives have changed....<span style="color: purple; font-family: Georgia, "Times New Roman", serif;">For the better. Two years ago today Ember was placed on the transplant list. Two years ago today we started what could have been a very long wait for her life saving gift. Two years ago today we knew that our baby was sick, but we really had no idea how severe it really was. Yes, she was being placed on the transplant, but it wasn't final for us until she was actually transplanted. It was always one of those hopes that she would magically get well enough to be removed from the list. It happens, but not often. </span><br />
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<span style="color: purple; font-family: Georgia;">Since that day, our lives have changed in the most incredible ways. We have had to opportunity to watch our little girl live. And by live, I mean thrive. We have had the opportunity to meet several families affected by BA and it has been amazing. We have had the opportunity to meet some of the best nurses, surgeons, PCA's, and volunteers in the world. I can honestly say that without any of them, we wouldn't have made it through to today. They helped keep us sane while we tried to help keep others in our position sane. Since that day, we have also felt the loss of several beautiful liver babies. Even though we never met them, we felt the loss all the same. I can't even begin to count the silent tears I have cried for each and ever liver baby that we have lost or that is going through a rough time. I hope and pray that every liver baby can be as blessed as Ember has been. She has had relatively few complications since her transplant, and most of those complications have been unrelated. </span><br />
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<span style="color: purple; font-family: Georgia;">She has the peanut allergy and she is a very rashy baby. We worry a lot about the rashes because they seem to just come up out of the blue. However, if that is all we have to deal with, then I would say that we are very blessed. Two years ago, I would watch a very tiny 4 1/2 month old yellow baby sleep a lot. I would hold her wondering when she would crawl or even walk and what our future held. If I had only known. Many liver moms told me that the other side of transplant was amazing, but it just didn't click until I was there. Within days she was a pink baby! As she grew she became healthier and more active. She never did crawl by the way. She just went straight to walking! And now, you just can't stop her! </span><br />
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<span style="color: purple; font-family: Georgia;">Two years ago today we learned the true meaning of support. I can only hope that we can provide the same type of support to others as time goes on. And hopefully, one day, we won't need to because they will find a cure for BA. Thank you to everyone who supported us then, continue to support us now, and will support us in the future. It means more than we can say and we love you for it. </span>Jeannie, Jane, Angel, Mommy, etc..http://www.blogger.com/profile/11628880971314832669noreply@blogger.com1tag:blogger.com,1999:blog-4014826944785611762.post-72396793712202692372010-07-25T23:06:00.000-05:002010-07-25T23:06:08.428-05:00Enjoying life<span style="color: purple; font-family: Georgia, "Times New Roman", serif;">It has been entirely too long since I have made an update on Ember. I really think that it has been out of mommy being lazy and well, there has just been life happening. Nothing really liver related. Well, that's not entirely true. We are still doing monthly labs. They continue to come back normal every single time. We are truly blessed. Also, on July 9th, Ember had what is called an IGFR test. The way it was explained to us is that it is a test that will help determine her kidney function. The reason she had this test is because her medicine can damage her kidneys. Her test came back completely fine. We have no worries. Very much a relief. </span><br />
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<span style="color: purple; font-family: Georgia;">While we were getting her test done, I noticed a Dr. that looked very familiar to me. I didn't mean to interrupt him, but I was SO excited to see him. It was Dr. P. The Dr. that helped to diagnose her with BA almost 2 years ago now. It was such a treat for me to get to introduce her to him as the thriving 2 year old she is now. I don't think that he has seen her since her Kasai procedure. He was always so sweet with her. He would come in and just talk to her and caress her hair as she was sleeping or just lying in bed. I really felt like he cared for her as if she was his own. She was just a tiny 11 week old baby then and now she is a active toddler. I wrote him a quick thank-you note with her website address on it and gave it to him before we left. We found out that after that week, he was moving. Children's lost a great Dr., but another hospital has gained him and I hope they know how lucky they are.</span><br />
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<span style="color: purple; font-family: Georgia;">Other than that, we have just been having a normal life. It's funny how I always thought that I would never be able to say that about her. I was SO wrong. Ember is absolutely in her 2's. She throws tantrums, tells us "No, no, no" A LOT, and loves on her sister more than I could ever ask. We also had a photo shoot with some other BA families since I have updated last time. It was so great to get to meet others that were pre and post transplant. She was her usual self. There is even a picture where she is holding her hands out to hold a small baby named Willow. We kept telling her that she couldn't hold the baby! Ember didn't care, she was determined to hold her. She settled for touching her and saying "Awww Baby" a lot. </span><br />
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<span style="color: purple; font-family: Georgia;">She has been incredibly understanding with her sister as well. Four weeks ago I fell with her and ended up breaking her leg. She has been in a cast of one type or another since. Ember has had to deal with mommy showing a bit more attention to sissy because of that and all in all she has been great. There have been moments where she earned herself time out, but I think that is the 2 year old in her. Tomorrow we go to get the cast off and I am sure Ember is in for a reality check. I truly think that her sister is going to give her a run for her money! </span><br />
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<span style="color: purple; font-family: Georgia;">On a sad note, we did learn that her donor's family moved and left no forwarding address with the Organ Procurement Agency. It was a very sad day for me. I had envisioned so many times getting to introduce Ember to the family. Getting to let them see they type of little girl she is growing into. The compassion she feels, at 2 years old, for others. I knew that it was always a possibility that we would never meet them, but I hoped that wasn't going to be the case for us. I have decided that we are going to continue to write letter's to her Angel, but we will save them just in case we end up hearing from them. And if not, maybe they will help someone else find the words to write to their donor family. </span><br />
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<span style="color: purple; font-family: Georgia;">I hate to leave this update on a sad note, so here's a cute thought. Ember's hair is now just long enough to put into pigtails! It is the most adorable thing I have seen yet!!!! I will try to post pics soon.</span>Jeannie, Jane, Angel, Mommy, etc..http://www.blogger.com/profile/11628880971314832669noreply@blogger.com0tag:blogger.com,1999:blog-4014826944785611762.post-50260860917265325522010-05-30T11:28:00.000-05:002010-05-30T11:28:45.305-05:002 Years Old<div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><span style="color: purple; font-family: Georgia, "Times New Roman", serif;">Our little Monkey is officially 2 years old today! I can't believe she is 2. It doesn't really seem like we have had her in our lives for that long. I know that in the grand scheme of things 2 years is nothing, but it is a lot for us. Especially considering there was a time where we might not have made it to this point. Here is a tiny look back at the past two years.</span></div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><br />
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</div><div align="left" class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh9_QE0i3L8zFn-0PtAUiLX6gjxmUmyHXATqKFGEpJxAMb04bfmUuajA9FsWqMjmDzfV0Oivjd8MYjzEOVEICaS18xbnoNKujKHAiLalPbtzApGWjcCXACu3RQUv3XP9ix7GwkTFNtUINs/s1600/Ember+and+Mom4.JPG" imageanchor="1" style="clear: left; cssfloat: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" gu="true" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh9_QE0i3L8zFn-0PtAUiLX6gjxmUmyHXATqKFGEpJxAMb04bfmUuajA9FsWqMjmDzfV0Oivjd8MYjzEOVEICaS18xbnoNKujKHAiLalPbtzApGWjcCXACu3RQUv3XP9ix7GwkTFNtUINs/s200/Ember+and+Mom4.JPG" width="200" /></a><span style="color: purple; font-family: Georgia, "Times New Roman", serif;">This was taken right after we got to our room when she was born. I had a c-section so I was not tired in the least! So happy to see her finally here.</span></div><div align="left" class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: center;"><br />
</div><div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhqxQcxYRy4WRPiR5BVh59U1y1hlmZ-djtFmPA8cz_RfV_muLKFubSrfG1k8AoMJa2IGISRtpHY0-ypGM4IRzWhJ3bHaKqlla9jCv7MsjOO-rA_2MGnKwy7z5plB25T2qrTNHtSL8ilROU/s1600/072908-3.JPG" imageanchor="1" style="clear: left; cssfloat: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" gu="true" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhqxQcxYRy4WRPiR5BVh59U1y1hlmZ-djtFmPA8cz_RfV_muLKFubSrfG1k8AoMJa2IGISRtpHY0-ypGM4IRzWhJ3bHaKqlla9jCv7MsjOO-rA_2MGnKwy7z5plB25T2qrTNHtSL8ilROU/s200/072908-3.JPG" width="200" /></a><span style="color: purple; font-family: Georgia, "Times New Roman", serif;">This is Ember with her Great Grandma at almost 2 months. This is one of the only pictures I have of them together. By the time Ember was born Grandma was suffering from the horrible effects of Dementia and Alzheimer's. She may not have remembered much, but she always asked where Ember was when we went to see her. She loved Ember so much and I am so happy that they got to meet. Ember is so much like her Great Grandma that it is a little scary. RIP Grandma. We love you.</span></div><div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: center;"><br />
</div><div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjbEi9y0Cc7uQI_7ml_CvZF3Rg4voIagSGMnDVkdv4RO_OwSs0niGIN78a2xtz2_6NPzEMG_fVnTp3Gj1K_skFfcLaFpCiJCrsBt76xFQ9ZRiOE7AjVKFZWnABD1YziTV8NClQYlgnZKM0/s1600/IMG_0408.JPG" imageanchor="1" style="clear: left; cssfloat: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" gu="true" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjbEi9y0Cc7uQI_7ml_CvZF3Rg4voIagSGMnDVkdv4RO_OwSs0niGIN78a2xtz2_6NPzEMG_fVnTp3Gj1K_skFfcLaFpCiJCrsBt76xFQ9ZRiOE7AjVKFZWnABD1YziTV8NClQYlgnZKM0/s200/IMG_0408.JPG" width="200" /></a><span style="color: purple; font-family: Georgia, "Times New Roman", serif;">This is two days after Ember's first surgery. She was just 3 1/2 months old. Looking back, I now know how yellow she really was. We were in the hospital for a total of 16 days after that first surgery. This was taken right after feeding her a measly 2 ounces. It was one of the few times she didn't throw it back up all over me.</span></div><div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj8t4Gf5aSXC-Z7thWG9VxhcjVv_2ADizQzC5BfBiFrnARBKy5jo9jRWcP2rg-Rhz_vp6uuRDpzAScCw-ITEKj8F1uuzfn33dQ3fsgmb_uwsPwk6DQ9fahYZ0irHD47Y37X2byJ_qmG9Q0/s1600/IMG_0569.JPG" imageanchor="1" style="clear: left; cssfloat: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" gu="true" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj8t4Gf5aSXC-Z7thWG9VxhcjVv_2ADizQzC5BfBiFrnARBKy5jo9jRWcP2rg-Rhz_vp6uuRDpzAScCw-ITEKj8F1uuzfn33dQ3fsgmb_uwsPwk6DQ9fahYZ0irHD47Y37X2byJ_qmG9Q0/s200/IMG_0569.JPG" width="200" /></a><span style="color: purple; font-family: Georgia, "Times New Roman", serif;">This was taken on 11/18/08. The hardest day of my life so far. This was in the waiting room just before handing my baby over to a team of surgeons for her liver transplant. She was still all smiles even though she hadn't eaten anything for awhile. She went through a surgery that was about 6 1/2 hours. That day her life was saved due to someones selfless act. We love and thank her donor angel every day.</span></div><div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: center;"><br />
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</div><div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi2YA87ak0UbrVVHxcNpGD6CjqJLXeYoSKCdeMO5XbDB_QaDYMOHV0bdaBCgozlNCu7_gimXM18FHdjtHlAXfvSSEJIaj6pxxePuIzY49XJGeQbem5hkClnGgldLaJUyN4aw2n882knsTk/s1600/IMG_0605.JPG" imageanchor="1" style="clear: left; cssfloat: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" gu="true" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi2YA87ak0UbrVVHxcNpGD6CjqJLXeYoSKCdeMO5XbDB_QaDYMOHV0bdaBCgozlNCu7_gimXM18FHdjtHlAXfvSSEJIaj6pxxePuIzY49XJGeQbem5hkClnGgldLaJUyN4aw2n882knsTk/s200/IMG_0605.JPG" width="150" /></a><span style="color: purple; font-family: Georgia, "Times New Roman", serif;">This is one of my most favorite pictures of her. This is the first time she wore her snowsuit. We were on our way to a clinic visit and it was extremely cold. I was excited to get her in it. She was 6 months old here. Only about 20 days after her transplant.</span></div><div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: center;"><br />
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</div><div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiaAM0AyuCAEgCwpip3DHwSVcbTHy2qMfAQG7YDBN-X0OPHWFMZV2lHBHWaDkLuRyIL6gIlmeWdBj5-5oS4zUVqolebGcmpiCcl3QUZWWisUCzNzIenh-E4EM5m35zZliQ9nu3HZLA_HWw/s1600/watching+the+world+go+by.jpg" imageanchor="1" style="clear: left; cssfloat: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" gu="true" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiaAM0AyuCAEgCwpip3DHwSVcbTHy2qMfAQG7YDBN-X0OPHWFMZV2lHBHWaDkLuRyIL6gIlmeWdBj5-5oS4zUVqolebGcmpiCcl3QUZWWisUCzNzIenh-E4EM5m35zZliQ9nu3HZLA_HWw/s200/watching+the+world+go+by.jpg" width="200" /></a><span style="color: purple; font-family: Georgia, "Times New Roman", serif;">Skipping ahead just slightly, this picture is another one of my favorites. This is a few days before she turned 1. She was sitting at the front door just watching the world go by.</span></div><div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: center;"><br />
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</div><div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh8bSSW-U2IV8Dy9Z-6nnYrzZk7I-1SZVTvKS2PGoJgut3_RUBieVIB3-DcL5m-FycucojytVlv5wp5aFdhKI-5hRcDe_hwJrLdajb73e_JHRncHYB0lfcewiJ6K4SYrqatk_1jUVuw1uY/s1600/IMG_0957.jpg" imageanchor="1" style="clear: left; cssfloat: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" gu="true" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh8bSSW-U2IV8Dy9Z-6nnYrzZk7I-1SZVTvKS2PGoJgut3_RUBieVIB3-DcL5m-FycucojytVlv5wp5aFdhKI-5hRcDe_hwJrLdajb73e_JHRncHYB0lfcewiJ6K4SYrqatk_1jUVuw1uY/s200/IMG_0957.jpg" width="200" /></a><span style="color: purple; font-family: Georgia, "Times New Roman", serif;">Ember at 16 months playing "Soooo Big". She was also trying to use the box that is right in front of her to stand on so she could reach the tray of her highchair.</span></div><div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: center;"><br />
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</div><div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiDXGD3F9vE2EI_pMe6lQDCThGWExGQqHBr-m3JyOEdMN1iogJY_NRj3cVEvQiJT8HkIdsWjsTBK3jltZQddbNS_mpb-Csa5ZoUgpY3ILuvWyVIiztqtL95T_IacZroGACCB01L1xdKFdQ/s1600/IMG_1038.JPG" imageanchor="1" style="clear: left; cssfloat: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" gu="true" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiDXGD3F9vE2EI_pMe6lQDCThGWExGQqHBr-m3JyOEdMN1iogJY_NRj3cVEvQiJT8HkIdsWjsTBK3jltZQddbNS_mpb-Csa5ZoUgpY3ILuvWyVIiztqtL95T_IacZroGACCB01L1xdKFdQ/s200/IMG_1038.JPG" width="200" /></a><span style="color: purple; font-family: Georgia, "Times New Roman", serif;">This is just a few days after we brought her little sister home. She is so in love with her. This was at 17 1/2 months. She still always wants to hold her. It is too cute.</span></div><div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: center;"><br />
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</div><div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhN98Dj1DOoLaMJvTXthIK1uDnyMgYkS_AzHC-beKRiSZkE2yTkO4xCNY1ZEvpg94tuPaveFLRvMzuzVITHGjMXXv2LNpR0OHOmuleHjIF4BLgkfK9roFi6l2fYpxmAX1u_vQZM9Ufm3vc/s1600/IMG_1384.JPG" imageanchor="1" style="clear: left; cssfloat: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" gu="true" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhN98Dj1DOoLaMJvTXthIK1uDnyMgYkS_AzHC-beKRiSZkE2yTkO4xCNY1ZEvpg94tuPaveFLRvMzuzVITHGjMXXv2LNpR0OHOmuleHjIF4BLgkfK9roFi6l2fYpxmAX1u_vQZM9Ufm3vc/s200/IMG_1384.JPG" width="150" /></a><span style="color: purple; font-family: Georgia, "Times New Roman", serif;">This is our little Monkey today. This was taken just a few days ago. The dress she is wearing is actually a dress that her Great-Grandma made. She made it for me when I was Ember's age. I can't believe that she has come so far. Today she is a normal, happy, healthy toddler. To look at her you would never know what she has been through. Well, aside from when she lifts up her shirt and shows off her zombie fighting scar (at least that is what the huz says he is going to tell her when she gets older). </span></div><div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: center;"><br />
</div><div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: center;"><span style="color: purple; font-family: Georgia;">Happy Birthday my little Monkey. I love you so very much. I am so very happy that you chose us to be your family. You have changed our lives for the better. We can't imagine life without you in it.</span></div>Jeannie, Jane, Angel, Mommy, etc..http://www.blogger.com/profile/11628880971314832669noreply@blogger.com2tag:blogger.com,1999:blog-4014826944785611762.post-6433792256965958972010-03-11T13:15:00.000-06:002010-03-11T13:15:00.399-06:00Allergy Testing<span style="color: purple; font-family: Georgia, "Times New Roman", serif;"><span style="color: purple; font-family: Georgia, "Times New Roman", serif;">Tuesday we took Ember to the allergist for allergy testing. In November she broke out in hives around her mouth after eating something. We had assumed that it was from the meringue off of a pie. So, we made the appointment for March and waited. </span></span><br />
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<span style="color: purple; font-family: Georgia, "Times New Roman", serif;"><span style="color: purple; font-family: Georgia, "Times New Roman", serif;">When we got to the allergist, we told her what happened and that we suspected an allergy to raw eggs. She said that we could test for household allergies (dogs, cats, dust, etc), seasonal allergens, eggs, and nuts. The testing wasn't at all what I expected. I thought that there were going to do needles with injections just under her skin. Instead they did these little 6 pronged trays and placed them on her back. I think the worst part for Ember, other than just being at a Dr's office, was having to be held down while they applied 4 of the trays to her back. Then we waited for 15 minutes.</span></span><br />
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<span style="color: purple; font-family: Georgia, "Times New Roman", serif;"><span style="color: purple; font-family: Georgia, "Times New Roman", serif;">After the 15 minutes, the nurse came back in and looked at Embers back, and then measured the places that seemed to be inflamed. The first spot was Histamine. It is basically their control spot to make sure that the test is working. It was a 5X7 red bump on her back. The only other spot that showed up was a 5X5 spot on her back. And it just so happened to be........if you guessed eggs, you are just as wrong as we were......Peanuts! I am SO glad that we decided to do this testing. Ember hasn't had any nuts yet since her transplant nurse mentioned to me that kids aren't supposed to have them until they are 2 now. I had told Matt that once the allergy testing was done, we might try introducing some peanut butter since she is only a few months away from turning 2. (Can you believe it?! My little monkey is going to be 2?!)</span></span><br />
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<span style="color: purple; font-family: Georgia, "Times New Roman", serif;"><span style="color: purple; font-family: Georgia, "Times New Roman", serif;">Matt was SO disappointed. He was so looking forward to sharing peanut butter and jelly sandwiches with her. I told him that maybe they still could depending on if she grows out of the allergy or not. When we take her to get her normal liver labs done, they are going to draw extra blood for the allergist. She told us that it would give them a number to base how severe her allergy is and then they could track it over time. We are going to have to go back to see then in about 3 months. They gave us some information on reading labels and what she could and couldn't have. They also gave us a prescription for some Epi-Pens. Kind of scary, but I know that we won't have to use them if we just keep an eye on her. </span></span><br />
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<span style="color: purple; font-family: Georgia, "Times New Roman", serif;"><span style="color: purple; font-family: Georgia, "Times New Roman", serif;">So, for now we wait to see what the results of her blood work is. I also really need to bet my rear in gear and order her a medic alert bracelet now. She technically should already have one, but now it's even more of a necessity. </span></span>Jeannie, Jane, Angel, Mommy, etc..http://www.blogger.com/profile/11628880971314832669noreply@blogger.com3tag:blogger.com,1999:blog-4014826944785611762.post-63121859612740878232010-02-25T20:52:00.000-06:002010-02-25T20:52:22.710-06:00Liver Families 4th Birthday<span style="color: purple; font-family: Georgia, "Times New Roman", serif;">The above montage is from a board that I joined right when Ember was diagnosed with Biliary Atresia. Liver Families has helped me through SO much. I am so blessed to have such great internet friends as the people on Liver Families. I am sad that we share the common bong od liver disease, but I am glad that we have a place to share stories. Please sign up to be an Organ Donor today.</span>Jeannie, Jane, Angel, Mommy, etc..http://www.blogger.com/profile/11628880971314832669noreply@blogger.com1tag:blogger.com,1999:blog-4014826944785611762.post-13671805792016655332010-02-23T20:17:00.000-06:002010-02-23T20:17:29.175-06:00Prayer Reqest..<span style="color: magenta; font-family: Georgia, "Times New Roman", serif;">Ember would like to ask any of you who read her blog or <a href="http://www.diaryofjeannie.blogspot.com/">my blog</a> to pray for a friend of ours. His name is Jax and he is currently on the Liver transplant waiting list. He is 9 months old and has <a href="http://en.wikipedia.org/wiki/Biliary_atresia">Biliary Atresia</a>, the same disease Ember was diagnosed with. Jax is not a candidate for a living donor due to complications with his <a href="http://en.wikipedia.org/wiki/Hepatic_portal_vein">portal vein</a>. Please pray that someone says yes to giving him a chance at life. </span><br />
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<span style="color: magenta; font-family: Georgia;">It is a bitter sweet prayer, to ask for one child to gain a life due to someone else losing theirs. Please keep little Jax in your thoughts as well as the families who are saying yes to saving other lives. </span>Jeannie, Jane, Angel, Mommy, etc..http://www.blogger.com/profile/11628880971314832669noreply@blogger.com1tag:blogger.com,1999:blog-4014826944785611762.post-40299761968056343552010-02-21T23:04:00.000-06:002010-02-21T23:04:17.095-06:00Special little girl...<span style="color: purple; font-family: Georgia, "Times New Roman", serif;">As the months have passed since Ember has become a big sister I have been wondering several things. One of which has been whether I was going to love her sister as much as I love her. <span style="font-size: xx-small;">I do...surprised? Me neither.</span> Another is how I am going to manage to show Ember that she is still a very special little girl. I have to admit that I have been failing in the second point that I just mentioned. Ember has become a happy, healthy little toddler and I sometimes forget how extraordinary she is, even if it is just for a moment in time. I want to stress to her that she is important and that she is oh so special and I have been neglectful of that since her sister has been born. Let me state right now that I do not believe in playing favorites with your children or grandchildren. I went through that with one of my sets of grandparents through most of my life and I will not stand for it when it comes to my children. So it is not a matter of showing favorites for me. I guess I mean to say that <strong>I</strong> think that Ember is feeling a little neglected because she doesn't have exclusive mommy and daddy time anymore. She hardly ever shows it though because she is so in love with her sister. She always wants to hug, kiss, and love on her. She is also very good at helping when I need a burp cloth or a blanket. We are still working on getting her to leave a blanket on her sister when she is in the bouncy seat. </span><br />
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<span style="color: purple; font-family: Georgia;">While Ember is a special little girl becuase of her transplant and her opportunity to change lives through her story, that does not define her. She is special because of her love, her sense of humor, and her creativity. She shows unremarkable love towards everyone she meets. She truly watches people and wants to hug or high five or wave to them. She LOVES babies and children. She is so small, yet she has an incredible amount of compassion. She comforts her sister when she cries. Admittedly, she has also comforted me when she has caught me crying. Her sense of humor is like nothing I have ever seen before. Well, I have...it's her father's sense of humor. She finds the smallest things funny and has this infectious laugh. She thinks that the cat is funny even if he is just sleeping. And, you know what? He is sometimes. :) And her creativity is amazing. She loves to draw, but she also loves to figure things out. She can figure out how to turn a toy into a stool to sit or stand on in 2.5 seconds flat. She can also figure out how to fill and dump out any container you could ever imagine in less time than that. </span><br />
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<span style="color: purple; font-family: Georgia;">I can only hope that as she grows she can share her story, become an inspiration to others, and teach her sister how to love, laugh, and live as joyful a life as she seems to have right now. I hope she can teach her sister that she is also a special little girl. I hope that I, as her mommy, can teach her that both of my girls are extraordinary in their own way. Ember is a special little girl, but not because she is defined by her transplant or her disease. It is because, at the ripe old age of <span style="font-size: xx-small;">almost</span> 21 months, she has defined her transplant and her disease as part of her life. She has made herself and her life the story and we are all along for the ride. I hope that along the way she can teach me how to enjoy the things that she does along with her sister. Oh, and if she could decide that she would like to be potty trained sometime soon that would be great too, but I am not holding my breath!!! </span><br />
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<span style="color: purple; font-family: Georgia;">I love you my beautiful, special baby girls. Live long and prosper. Yes, I like Star Trek. Don't judge.</span>Jeannie, Jane, Angel, Mommy, etc..http://www.blogger.com/profile/11628880971314832669noreply@blogger.com3tag:blogger.com,1999:blog-4014826944785611762.post-27476690068396580312010-01-08T22:40:00.002-06:002010-01-08T22:57:03.541-06:00Crazy toddler<span style="color:#cc33cc;">Ember has been getting along pretty well since Autumn has arrived. The novelty of having a new baby has not worn off yet. I am waiting for it to happen, but so far so good. She constantly wants to love on and hug Autumn. She even tries to help us burp her whenever she can. Though, sometimes she does try a little too hard! </span><br /><span style="color:#cc33cc;"></span><br /><span style="color:#cc33cc;">Aside from getting along with Autumn, she is getting into EVERYTHING! I do mean everything. She is absolutely her father's daughter. She is way to smart for her own good. She is trying to figure out both baby gates that we have. She watches us open and close them and then walks up to them later and tried to push on the buttons. Luckily she isn't strong enough for that yet. She has also been tyring to figure out how to plug the cord back into the swing. Every once in awhile she will get a hold of the cord once we have unplugged it from the swing and the wall (off of mommy or daddy's desk!) and walk up to the swing, with the correct end mind you, and try to plus it back in. It is neat to watch how she figures things out, but it is also not such a good thing.</span><br /><span style="color:#cc33cc;"></span><br /><span style="color:#cc33cc;">Right now she has been getting into a lot of trouble for grabbing things off of mommy and daddy's desks. Especially drinks. I can't tell you how many times I have had to change her right before we leave the house because I turn my back for two second and she has dumped a drink down the front of her! I should have learned long before now that I can't turn my back at all! </span><br /><span style="color:#cc33cc;"></span><br /><span style="color:#cc33cc;">She also knows exactly where her snacks are in the pantry. She will run right up to the door and knock on it if it is closed. If it is open, she just dives right in and grabs a few snacks then runs away! She is always laughing when she does it. I fail to find the humor in it sometimes. :) Other's I must admit that she is just too stinking cute.</span><br /><span style="color:#cc33cc;"></span><br /><span style="color:#cc33cc;">One of her latest laughs is standing in front of the humidifier mist. She stands there and just laughs and laughs. Then she walks about for about 0.2 seconds and runs back to it and laughs some more. It really is cute. She just can't quite figure it out. She is also a big fan of music. Almost any music at all will get her dancing. Especially anything from The Laurie Berkner band. Any time something from them comes on, she drops whatever he is doing and just starts dancing away. It used to just be one big screaming and spinning in a circle fest, but now she is actually getting some moves down. She bends her knees and bounces and swings her arms! Too cute as well! I know that I am bad about leaving the TV on all day for her, but I do it because of all of the music. NickJr is very good about having tons of music videos in between their shows. Most of the shows she actually plays through so I feel that it is a good compromise.</span><br /><span style="color:#cc33cc;"></span><br /><span style="color:#cc33cc;">As far as LuLu the Liver is concerned, she is happy. Ember's numbers have all come back great. We are going again next week for another round of labs and hope to hear that they are just as good. She is growing tall and gaining weight as expected which is very good. We are just so blessed to have her as healthy as she is. </span>Jeannie, Jane, Angel, Mommy, etc..http://www.blogger.com/profile/11628880971314832669noreply@blogger.com1tag:blogger.com,1999:blog-4014826944785611762.post-30377911691323569112009-12-09T23:23:00.006-06:002009-12-09T23:44:48.734-06:00I'm the big sister!!!!<div><span style="color:#993399;">On 11/24/09 Ember welcomed her new little sister Autumn Therese into the world. She decided to make her grand debut a little earlier than anyone expected so Ember was a little less than prepared. She thought that she was just going to have a fun day at home with Grandpa and then mommy would return to her. Well, that was not the case. Autumn decided to be too lazy for the Dr's liking so he said she needed to come early. So, Ember did get to spend the day with Grandpa, but mommy nor daddy returned to her. Instead, that afternoon she got to take a ride to the hospital to meet her new baby sister. </span><br /><br /><div><span style="color:#993399;"></span></div><div><span style="color:#993399;">We were all worried that the minute she got into the hospital and saw the nurses and dr's she would freak out. She has been having a lot of major anxiety about dr's and dr offices lately. Enough so that she just starts crying at the sight of a white coat or blood pressure cuff. However, she did amazingly well. She was also VERY happy to see her baby sister. She immediately wanted to touch her and love on her. Due to this event she also got to have another first. She spent her first nights away from mommy and daddy. The first two nights she stayed in her own crib with grandparents staying at our house, but the third night she stayed the night at Maw Maw and Paw Paws house. Her first official sleep over! </span></div><br /><div><span style="color:#993399;">Since we have been home, Ember has been great with the baby. She has been a little fussy, but it's not really from being jealous. It is because mommy can't pick her up on her own yet. Not sure when I will be able to, but I want to so bad. Now, two weeks out, I can have her put on my lap and I can hold her, but it's not the same as being able to just pick her up whenever she wants/needs to be held. Plus, she has gotten a cold and has been very stuffed up the past few days. She has continued to be VERY loving towards Autumn and loves hugging, patting, and kissing her on the head. It is so sweet. </span></div><br /><div><span style="color:#993399;">Today we had a slight meltdown however. Ember wanted to love on Autumn and hold her like mommy was so I told daddy to sit her on the couch. We then let Ember "hold" Autumn. She was beaming and just kept staring at her. We did take some pictures. The meltdown happened when we tried to take Autumn back. Ember yelled at us and held onto Autumn. So, we let her hold her for a little bit longer. Then I tried to take her again and Ember did the same thing. She yelled and tried to pull Autumn closer to her. I explained to Ember that Autumn was not a baby doll and then took her back. Ember threw an all out fit. Crying and yelling and actually laying down on the floor kicking her feet!!!! It was actually pretty different. She has thrown mini tantrums before, but nothing like that!</span></div><br /><div><span style="color:#993399;">The rest of the night she was alright with her. She continued to want to try to hold Autumn, but didn't really throw any fits when we said no. I am sure that the novelty will wear off soon and Ember will want us to take her back! hehe For now though, I am enjoying that she is being such a great big sister. I look forward to them growing up together and becoming fast friends. They are both such beautiful little girls and I feel confident that they will be best of friends and love each other no matter what. At least that is what we are going to try to teach them. We are truly blessed to have Ember still with us and now we are doubly blessed to welcome a new little girl into our lives. Hopefully Ember will teach her all of the things that she has taught us the past 18 months and even more as they grow up together. The picks below are Ember meeting Autumn and Ember in her "I'm the big sister shirt". She also got the puppy she is holding as a present.</span></div><br /><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh_j_Fw2D5ZzMwN41In8Fz1kf6mfX72MhLspsbpmr2eycr_ZRXVTsS4oTJob0ZjMzypS5x53GqKf8UVD1BtOYX0NbSM1tyyzSeTYQifTHA4AsEPzEjjyJbB_xO0CeqG5THTx86xeXxWKMw/s1600-h/Autumn+is+born+084.JPG"><img style="MARGIN: 0px 10px 10px 0px; WIDTH: 320px; FLOAT: left; HEIGHT: 240px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5413477731882080770" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh_j_Fw2D5ZzMwN41In8Fz1kf6mfX72MhLspsbpmr2eycr_ZRXVTsS4oTJob0ZjMzypS5x53GqKf8UVD1BtOYX0NbSM1tyyzSeTYQifTHA4AsEPzEjjyJbB_xO0CeqG5THTx86xeXxWKMw/s320/Autumn+is+born+084.JPG" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEht7W5i0BFoPLPciSB5fPdX6lfJ8i_y4arnvRL-RN2JJEK_PagSE-9MQphupGTX0Wl0PfH-arlP2aA7LlW-9s_l0yuedUTZDFIkdK1ukhT6caEQPdUH-P8abgxFE9SrblHqXfVsy4lB_As/s1600-h/Autumn+is+born+076.JPG"><img style="MARGIN: 0px 10px 10px 0px; WIDTH: 320px; FLOAT: left; HEIGHT: 240px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5413478304640902594" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEht7W5i0BFoPLPciSB5fPdX6lfJ8i_y4arnvRL-RN2JJEK_PagSE-9MQphupGTX0Wl0PfH-arlP2aA7LlW-9s_l0yuedUTZDFIkdK1ukhT6caEQPdUH-P8abgxFE9SrblHqXfVsy4lB_As/s320/Autumn+is+born+076.JPG" /></a></div></div>Jeannie, Jane, Angel, Mommy, etc..http://www.blogger.com/profile/11628880971314832669noreply@blogger.com1tag:blogger.com,1999:blog-4014826944785611762.post-27898505960892582062009-11-03T21:12:00.006-06:002009-11-03T21:39:21.201-06:00Pictures of me<span style="color:#cc33cc;">Here are some pictures of Ember from the vacation we took to branson. I have also added them into her slide show along with a few others taken from that vacation!</span> <div><div><span style="color:#cc33cc;"></span></div><div><br /></div><div><span style="color:#cc33cc;">Butt changing time!</span></div><div><br /> </div><div><span style="color:#cc33cc;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh_ozCc8JgN3rMAhfFcusdwlnYMkg7GVt1NbHEbeYu8ccOle-eEdsA_L9TuJmvLm9rgwxZ0jqyYP3WkYhuOdChnOhS3n2gpdTAl9ZpTpuu-1_b3gN6fQZfRYjuaO6zU6yhYJQbLpJm0Bb4/s1600-h/Butt+Changing+time.jpg"><img style="MARGIN: 0px 10px 10px 0px; WIDTH: 320px; FLOAT: left; HEIGHT: 240px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5400082316327158002" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh_ozCc8JgN3rMAhfFcusdwlnYMkg7GVt1NbHEbeYu8ccOle-eEdsA_L9TuJmvLm9rgwxZ0jqyYP3WkYhuOdChnOhS3n2gpdTAl9ZpTpuu-1_b3gN6fQZfRYjuaO6zU6yhYJQbLpJm0Bb4/s320/Butt+Changing+time.jpg" /></a></span></div><div><br /><br /><br /></div><div><span style="color:#cc33cc;"></span></div><div><br /><br /><br /></div><div><span style="color:#cc33cc;"></span></div><div><br /><br /><br /></div><div><span style="color:#cc33cc;"></span></div><div><br /><br /><br /></div><div><span style="color:#cc33cc;"></span></div><div><br /><br /><br /></div><div><span style="color:#cc33cc;"></span></div><div><span style="color:#cc33cc;">Daddy took me on a ride. Doesn't he look comfy?!<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi23OqJmMycu2RFq9WgTAhOakKrisw6yBCukVKSJxgyFWhyphenhyphenvbutf-0yhYwoaPqNZf_LsVFj89c_gA_f8IbxS3pieUv_ihJALKV1TTBV29g1_UApZhPsvDVtzzqvw2OpA-SihVIjb7we7PQ/s1600-h/Daddy+and+me+riding3.jpg"><img style="MARGIN: 0px 10px 10px 0px; WIDTH: 320px; FLOAT: left; HEIGHT: 240px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5400085772273330210" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi23OqJmMycu2RFq9WgTAhOakKrisw6yBCukVKSJxgyFWhyphenhyphenvbutf-0yhYwoaPqNZf_LsVFj89c_gA_f8IbxS3pieUv_ihJALKV1TTBV29g1_UApZhPsvDVtzzqvw2OpA-SihVIjb7we7PQ/s320/Daddy+and+me+riding3.jpg" /></a></span></div><div><span style="color:#cc33cc;"></span> </div><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhv79x8M5XzclX66BJYU6kMGx1rIoRu37jk3CiEcdLeM-7lwOgZZja4sNafck3CVoBNKo2eQHIvm2yFU-qBbjKiOwYRl5b5BjDH0DFMPyPenaTEl2bMuwDa6DQjidK1R91HB2RkTx4cJdo/s1600-h/Daddy+and+me+riding4.jpg"><img style="MARGIN: 0px 10px 10px 0px; WIDTH: 320px; FLOAT: left; HEIGHT: 240px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5400085765325503202" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhv79x8M5XzclX66BJYU6kMGx1rIoRu37jk3CiEcdLeM-7lwOgZZja4sNafck3CVoBNKo2eQHIvm2yFU-qBbjKiOwYRl5b5BjDH0DFMPyPenaTEl2bMuwDa6DQjidK1R91HB2RkTx4cJdo/s320/Daddy+and+me+riding4.jpg" /></a></div><div><br /> </div><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhv79x8M5XzclX66BJYU6kMGx1rIoRu37jk3CiEcdLeM-7lwOgZZja4sNafck3CVoBNKo2eQHIvm2yFU-qBbjKiOwYRl5b5BjDH0DFMPyPenaTEl2bMuwDa6DQjidK1R91HB2RkTx4cJdo/s1600-h/Daddy+and+me+riding4.jpg"></a> </div><div><br /></div><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhv79x8M5XzclX66BJYU6kMGx1rIoRu37jk3CiEcdLeM-7lwOgZZja4sNafck3CVoBNKo2eQHIvm2yFU-qBbjKiOwYRl5b5BjDH0DFMPyPenaTEl2bMuwDa6DQjidK1R91HB2RkTx4cJdo/s1600-h/Daddy+and+me+riding4.jpg"></a> </div><div><br /> </div><div> </div><div> </div><div> </div><div> </div><div> </div><div> </div><div> </div><div><span style="font-family:georgia;color:#993399;">Vacation wears her out!<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhHBvrW2_8cuEqifLI0StZS-SRbgpn0Jz50v_D-yqfgRDS-JhSS28fCaJW6buHyXvbrM65fnBGu3eg_K_P-3WeX1CthJzXcSx22L6AeUdnXo9HN5aE43qCtPAT1gOBIjbcQFbEeVZ6SUpU/s1600-h/Vacation+is+tiring.jpg"><img style="MARGIN: 0px 10px 10px 0px; WIDTH: 240px; FLOAT: left; HEIGHT: 320px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5400086684960987314" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhHBvrW2_8cuEqifLI0StZS-SRbgpn0Jz50v_D-yqfgRDS-JhSS28fCaJW6buHyXvbrM65fnBGu3eg_K_P-3WeX1CthJzXcSx22L6AeUdnXo9HN5aE43qCtPAT1gOBIjbcQFbEeVZ6SUpU/s320/Vacation+is+tiring.jpg" /></a></span></div><div> </div><div> </div><div> </div></div><div> </div><div> </div><div> </div><div> </div><div> </div><div> </div><div> </div><div> </div><div> </div><div> </div><div> </div><div> </div><div> </div><div> </div><div> </div><div> </div><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhv79x8M5XzclX66BJYU6kMGx1rIoRu37jk3CiEcdLeM-7lwOgZZja4sNafck3CVoBNKo2eQHIvm2yFU-qBbjKiOwYRl5b5BjDH0DFMPyPenaTEl2bMuwDa6DQjidK1R91HB2RkTx4cJdo/s1600-h/Daddy+and+me+riding4.jpg"></a> </div>Jeannie, Jane, Angel, Mommy, etc..http://www.blogger.com/profile/11628880971314832669noreply@blogger.com0tag:blogger.com,1999:blog-4014826944785611762.post-78096715632541680722009-09-23T08:07:00.003-05:002009-09-23T08:16:22.244-05:00I'm going to be a great big sister!<span style="color:#993399;">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!</span><br /><span style="color:#993399;"></span><br /><span style="color:#993399;">1) Be loving and caring at all times - This includes sitting on, laying on, and using the cat to push off of when standing. </span><br /><span style="color:#993399;"></span><br /><span style="color:#993399;">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!</span><br /><span style="color:#993399;"></span><br /><span style="color:#993399;">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!</span><br /><span style="color:#993399;"></span><br /><span style="color:#993399;">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!</span>Jeannie, Jane, Angel, Mommy, etc..http://www.blogger.com/profile/11628880971314832669noreply@blogger.com1tag:blogger.com,1999:blog-4014826944785611762.post-2949807013371905482009-07-02T21:00:00.002-05:002009-07-02T21:01:07.785-05:00New pics!<span style="color:#993399;">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!</span>Jeannie, Jane, Angel, Mommy, etc..http://www.blogger.com/profile/11628880971314832669noreply@blogger.com0tag:blogger.com,1999:blog-4014826944785611762.post-29873152757235036852009-05-18T20:51:00.004-05:002009-05-18T21:02:24.203-05:006 months ago....Thank you<span style="color:#993399;">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. :) </span><br /><span style="color:#993399;"></span><br /><span style="color:#993399;">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 <span class="blsp-spelling-corrected" id="SPELLING_ERROR_0">relief</span> 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.</span><br /><span style="color:#993399;"></span><br /><span style="color:#993399;">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 <span class="blsp-spelling-corrected" id="SPELLING_ERROR_1">crawling</span> thing. She takes one or two "steps" of crawling before either <span class="blsp-spelling-corrected" id="SPELLING_ERROR_2">rolling</span> 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. </span><br /><span style="color:#993399;"></span><br /><span style="color:#993399;">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. </span>Jeannie, Jane, Angel, Mommy, etc..http://www.blogger.com/profile/11628880971314832669noreply@blogger.com4tag:blogger.com,1999:blog-4014826944785611762.post-23334089329754530332009-03-19T12:25:00.006-05:002009-03-19T12:38:52.117-05:00Meeting new friends is good<span style="color:#993399;">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. </span><br /><span style="color:#993399;"></span><br /><span style="color:#993399;">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 <a href="http://www.liverfamilies.net/" target="_blank">Liver Families</a> and The Patterson's helped us get through the toughest time. Hopefully, we can do that for this family. </span><br /><span style="color:#993399;"></span><br /><span style="color:#993399;">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! </span><br /><span style="color:#993399;"></span><br /><span style="color:#993399;">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! </span>Jeannie, Jane, Angel, Mommy, etc..http://www.blogger.com/profile/11628880971314832669noreply@blogger.com1tag:blogger.com,1999:blog-4014826944785611762.post-1635903376614136442009-03-09T09:44:00.003-05:002009-03-09T09:55:15.524-05:00Much better!<span style="color:#993399;">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!</span><br /><span style="color:#993399;"></span><br /><span style="color:#993399;">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. </span><br /><span style="color:#993399;"></span><br /><span style="color:#993399;">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. </span><br /><span style="color:#993399;"></span><br /><span style="color:#993399;">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. </span><br /><span style="color:#993399;"></span><br /><span style="color:#993399;">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.</span><br /><span style="color:#993399;"></span><br /><span style="color:#993399;">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. :)</span>Jeannie, Jane, Angel, Mommy, etc..http://www.blogger.com/profile/11628880971314832669noreply@blogger.com1tag:blogger.com,1999:blog-4014826944785611762.post-59754991850946105382009-02-23T20:17:00.002-06:002009-02-23T20:23:55.725-06:00I can't breathe!<span style="font-family:georgia;">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. </span><br /><span style="font-family:georgia;"></span><br /><span style="font-family:georgia;">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!! <span class="blsp-spelling-error" id="SPELLING_ERROR_0">Blech</span>! Poor thing was so mad when I tried to wipe her face again. </span><br /><br />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.Jeannie, Jane, Angel, Mommy, etc..http://www.blogger.com/profile/11628880971314832669noreply@blogger.com1tag:blogger.com,1999:blog-4014826944785611762.post-28822826141916479892009-02-18T10:04:00.002-06:002009-02-18T10:14:37.027-06:00RIP Dr. Morio Kasai<span style="color:#cc33cc;">I just found out today that Dr. Kasai passed away on December 8th, 2008. <a href="http://www.wofaps.org/download/moriokasai.htm" target="_blank">Click here for his obituary</a> 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. </span>Jeannie, Jane, Angel, Mommy, etc..http://www.blogger.com/profile/11628880971314832669noreply@blogger.com4