When I was nineteen, I studied for a semester in Vienna, Austria, with a group from BYU. We traveled around quite a bit while we were there, and at one point we went to Venice. During that trip, I went with my dear friends Mary and Rachael to a little island near Venice called Burano. What a gorgeous place. All the houses are painted bright colors and it's just darling. Well, Burano is famous for its lace, so the three of us decided to buy baby dresses that had a bit of lace on the front. I chose a white dress, and Madeline recently wore it for her blessing.
She looked good, I have to say, and it's kind of fun to have a story behind her dress. I especially love Madeline's smile in this next picture. She knows how to make me melt.
So, I appreciate the supportive comments you left on my recent post about Madeline's health. On Thursday we went back to Primary Children's, and the doctor called us that evening with an official diagnosis: Madeline has cystic fibrosis. I can't believe I just had to write that, but it's true. She really has cystic fibrosis. I've cried a lot since we found out, but I'm also glad we finally know what the problem is so we can get Madeline the help she needs to stay healthy.
Neither Dave nor I have any known history of cystic fibrosis in the family, so this really feels like it's come out of nowhere. (That's common, though, with recessive traits.) Also, we apparently have really, really, really uncommon mutations of the gene, because Madeline was already screened for the mutations that cause 95-96 percent of CF cases (and 100 percent of CF cases in Utah), and she was negative. Talk about winning the genetic lottery. Although I've got a lot on my mind right now, I'm not sure what else to say. I am happy to report that Madeline is now well over seven pounds and steadily gaining! Go, baby.
30 comments:
Oh my goodness. Poor little Maddie! You must be so worried about her. I don't really know what to say other than I'm sorry you got the news you did, and I'm glad she has you guys as her parents.
Your family is in our prayers!
It is way fun to have a great story for the dress. What a awesome smile picture! I'm sorry you had to type that too. Sorry about the results, but you are right it is good to know early. Sending our loves.
Oh Sara I can't even believe what I just read. I will keep you in my prayers. I am glad that you have a diagnoses at least. It is better to know what you are up against.
Madeline is so beautiful in her blessing dress!! I am so sorry to hear about what you are going through with her health. She is such a cutie and her smile is adorable!
Madeline is such a sweet baby! Andrew and I are so sorry to hear about the diagnosis, but we are glad that you know now what you can do to help her. We will continue to keep you guys in our prayers!
()()()()!!
I'm so very sorry to hear of this Sarah; you will be in my thoughts and prayers.
I'm so sorry. Poor Maddie.
We will keep you in our prayers as well! She is such a beautiful baby :)
Zach & Krista
I know that this probably doesn't help at all but one of my high school class presidents had cystic fibrosis. I would have never known if my best friend didn't live two doors down and her and his mom were friends. Anyway, I know things were hard but he served a full mission and when I saw his mom at Amy's wedding last month I confessed to her that I had had a major crush on him- after I had introduced my husband and daughter- and she told me that he and his wife had just had twin daughters. Anyway- I guess my point is, don't despair (though I know I would) life will still be really good for Madeline. And, you're in my prayers.
I'm am so sorry to hear the news. My heart is breaking for you. I wish there were words that could make it all better. Just know that I love you and I'm thinking about you.
Andi:)
I'm glad that you at least know what you are dealing with now. And that she is gaining weight. I loved the story about the dress,and it is such a beautiful dress. She is really stylin'.
Ich denke ganz ganz doll an euch! Ich weiss, dass ihr alles schaffen koennt! Ich sende eine ganz grosse Umarmung an euch 3! :)
Alles Liebe,
Judith
When I pulled this up Josh said, "Madewin! Ooooh, Madewin is so cute!" And he's giggling. We just love her so much it's incredible. My sister in law Sara says that her boys pray for baby Maddie, so she's got a lot of power behind her!
What a beautiful baby dress. And what a beautiful baby! I just want to stroke those beautiful baby cheeks!!!
And I'm sorry to hear about Maddie's diagnosis--but no one is more capable than you Sarah. You and Dave will be wonderful parents helping Maddie do everything she can to have the best quality of life despite having a disease.
I love you, Sarah.
With your own personal army of healthcare professionals and people that love you guys, you will have a big pool of support! I am glad to hear your cutie is getting big....one step at a time!
I love your blog Sarah! Your daughter is so adorable :) Tell Dave I said hi!
Oh dear. I will keep her (and you and Dave) in my prayers. What a precious baby!
Sara
I'm new to your blog, Christina mentioned Madeline's diagnosis. I'm Angie Winward, married to Mathew from Preston. He has CF.
It seems you have many resources and support. Of course, all cases are individual. Mathew has different severity of symptoms even from his two brothers. His lungs are worse, while Thane's digestion is bad etc. I'm sure this is all very overwhelming, it is ok to be upset.
The most helpful thing anyone ever said to me came from Mathew. "Be careful as you look at websites, and the CF Foundation etc. They often share the doom and gloom in order to raise money for a cure. CF is not all doom and gloom."
We are very happy and CF is not a huge part of our lives. I don't think of it everyday anymore. We've been married for nine years and have four kids. Math still has good health. If you ever need someone to talk to I would love to get to know you and offer any help that I can.
Many great developments have recently be made in the treatment of CF and I feel very optimistic that many more good treatments will be available.
Sarah, Maddie looks simply beautiful in her dress. What a fun story behind it! I'm also sorry to hear about that diagnosis. She must be a very special spirit to have been given such a trial. :-) And you and Dave must also be special - Heavenly Father entrusted you with her precious spirit. Someone told me that when you're given trials such as these, you can take it as a compliment from the Lord; He knows you're up to it. Still, it's hard to go through, isn't it? I'll pray for you guys.
i love the picture---one very similar is hanging right above our computer as we type. i need to post a picture of abigail in the dress I got from our dear wonderful trip in Italy. I love you--- we are definitely thinking of you and praying for you as you start learning all of the many ways you can help Madeline be as healthy as possible. I wish I was there to help in person. And, her dress is absolutely beautiful.
Dave and Sarah, our hearts and prayers continually go out to you. What amazing comfort and strength the gospel can give us, but it's still so hard to see your teeny little loved ones go through so much. You just wish so badly that you could take away their pains, but you know, Maddie is even that more special and will be that much stronger for having this extra situation in her life. We love you so much, and please, please let us know if we can do anything for you. We hope you find PCMC as great as we have found it. Best wishes!
She looks so beautiful in her blessing dress! I am so sorry about her diagnosis. It's a good thing she has such sweet parents to take care of her. Let me know if I can do anything for you guys.
your beautiful Madeline is already such a strong,strong girl. it's amazing what things Heavenly Father trusts us with.thank you for your examples of faith and courage and honest emotion. we pray for you and your adorable little Mads.
We love you three! What a beautiful little baby you two have. We just had a special little prayer for Madeline, and we will continue to pray.
Sarah and Dave and Madeline,
I am thinking about you and praying for you. The cool thing is that there has been so much developed medically to help treat cystic fibrosis, just over the past 10 years. Take care. I love the blessing dress, and what a neat story about it. :) Love ya!
She is so adorable! I love her dress! We are coming back at the end of July to pick up Chris's car and would love to meet your precious little girl!
You all were so prescient! I never bought anything very meaningful during our trips. I mean, I certainly have meaningful memories and photos, but not really any keepsakes. I was very wrapped up in myself as a 20-year-old--it didn't really occur to me that I would have kids someday!!
Anyway, Maddie is so precious and perfect. When I looked at the pics of her with heat packs strapped to her arms I thought my heart would break in half. I am sorry to hear about her challenging...scary...overwhelming diagnosis. But reading the comments gave me a lot of hope for your family. I don't know that much about CF. It sounds like researchers are learning more about it all the time. Sending prayers and love your way!! I'm glad that alles ist in Ordnung. :)
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