update on future Kimballs and a round of "Thank you's!"

Update: The amazing and wonderful researchers in England have released the needed information to make pre-implantation genetic testing possible!!! This in itself is a MIRACLE. I cannot express to those of you who are not familiar with research, labs and medical timelines just how incredible this is. The fact that we diagnosed Lila when a gene was not known, to a year later having the sequence in our possession is nothing short of amazing! Our genetic counselor has been researching labs who can create a test (since we will be the first couple to ever do this kinda of testing for Vici)  for us and a lab in Chicago said yes! -I know some people might have ethical problems with us using genetic selection, and believe me, we are not trying to "play God" we feel we are just taking advantage of modern medicine and doing some preventative screening to have healthy children. I hope that those of you who do find this ethically wrong will still be able to support us. I can't imagine having to go through this again. I don't think I am strong enough to say good-bye to a child, let alone two.- So now all that remains is coming up with a substantial amount of money! Here is where my thank you's come in.
If your my friend on Facebook you might have seen a few people post an indiegogo campaign. A co-worker of Quinn's has gone onto the site and made a page called "Lila needs a sibling". Here people can donate to our efforts in raising money for the in vitro process. This has been so touching and so hard for Quinn and I. Asking for help has been one of the most humbling experiences in my life. I was raised that if you can't afford something you don't get it. So when Quinn's friend Jeff made this site I was both touched and very uncomfortable. I didn't want to tell anyone about it. I was being a bit prideful and just wanted to hide. But I have been so touched by the people who have donated that I have to say THANK YOU!!! So far the site has raised over 2400 dollars. That is almost half of what the test will cost to create. I have been overwhelmed by the individuals who have stepped up to show their support monetarily and also the people who have anonymously contributed. Even one of Quinn's high school friends stopped by one night with a very generous check. How amazing all of you are! I am floored by your sweetness. That you would think of my family in these hard economic times and want to help us realize our dream of having healthy children. Lila performs miracles everyday, one of which has been showing me the angels around me. You all are so inspiring. I cannot  thank you enough. I hope you all realize how incredible you are.
Hopefully there is a happy ending for us. Someday I hope to dance at a child's wedding and kiss the sweet cheeks of a grand baby. And I know Lila will be there with me. I have no doubt that my own personal guardian angel will be cheering on her siblings. We will be so grateful for any spirits that will come into our home. We are still pursuing adoption, but we realize that could take years and we are anxious for more little ones. We are excited that there is hope once again in our lives, a future to work for.

snuggling

This is what Lila and I did this weekend. It was the perfect couple of days to snuggle, listen to the rain and feel better.

poor little one

 We thought Lila looked like she is wearing boxing gloves. I thought it was quite appropriate. What a little fighter.

 Getting IV antibiotics.  She didn't even cry. What a sweetie. Getting X rays was a whole different matter.

A much better recovery bed than the ICU. Quinn and Lila gave me this outdoor swing for mothers day. I know this will be Lila and I's new favorite place.

Poor baby Lila had a temp of 105.6 last night so it was off to the ER. We were doing so well for so long that this sickness took me by surprise. Sometimes I pretend that Lila is always going to be alright. It is so hard to come to the realization that she wont. They think she has a kidney infection. Last year a kidney infection landed us in the ICU so I am so happy that she is home and not at Primarys right now. We will just hunker down and cuddle for the next few days. I am so happy I have more days to do so.

testing

I guess the only good thing about Lila  having such a rare condition is that she is very fascinating to doctors and they want to get to know her better.  So we headed up to the Moran Eye center today to look more closely at her eyes. Lila has retinal albinism but she doesn't have the normal nystagmus (involuntary eye movements, due to reduced vision) that a lot of people with albinism have.  So poor little miss was poked and prodded for two hours to get good pictures of her eyes.  I felt so bad! This was the hardest I have seen Lila fight. She was pushing away, deep sighing, and tensing her little body. Finally, and amazingly, she gave up and went to sleep. Even with them pulling her eyes open she stayed asleep (a miracle) and they got ONE decent picture.  The picture showed that Lila's eyes look better than the average person with albinism. Worse than the general population but better than some of her peers. They guess then that Lila can see images.
All day I have been thinking back to when Lila was around four months and her Grandpa gave her a blessing and said that "she would surprise the doctors with how well she did." At the time I thought that meant our little girl would walk into primary's one day and make the rounds to all of her specialist, showing off the fact that she was completely normal. As time went on and that wasn't the case I became so frustrated. Now I realize that little miss is going to do well in her own little sphere. She is doing so well for a Vici child. We are blessed for smiles and for brief moments of eye contact followed by a smile (those are my absolute, hands down favorite moments in life) and laughter.

Happy Mothers Day My Love

My dear sweet wife. I have been witness to some of the most beautiful sights and events in my life. None compare to the day I married you. I did so knowing that you would be my best friend and that you would bring a marvelous example of Christ like love for my babies. To see you with my darling Lila, inspires me. I feel the need to work every day to deserve you and to love Lila like you do. My prayer for you is that you know of my love and the love of so many that you have touched , You truly are a marvel. Quinn

Thank you

I hate to admit it but I kind have been dreading mothers day. While most of my free time is spent in the pursuit of having more children, mothers day is just a reminder that I don't have them, and maybe never will. Don't get me wrong, I love being Lila's mom. She is the biggest blessing in my life.  I adore her with every ounce of my being. She is my everything. But I am not having the "normal" experience. There will not be sticky kisses or sweet baby "I love you"s said to me on Sunday. Sometimes its hard to remember that I am a mother.  The things that mothers do on a day to day bases are not even in my same universe. And I covet them, yes even the tantrums and the crying, I covet all the normal experiences that I see people taking for granted.  If only I could shake off Lila's Vici syndrome for five minutes and have her look into my eyes, recognize me and hear her sweet angel voice I would be the happiest mother on Earth.
So you can imagine how touched I was when an old friend sent me tulips and chocolates this week telling me that I was a good mom.  For a moment I felt a little bit included in this holiday. That I could say the day was for me as well. Thank you Margot.

sweet baby Jett

 Lila's future boyfriend Jett.

 Poor baby Jett. He just got his GJ tube in his tummy and had surgery to fix his cleft palate so he wasn't a happy boy. Could you blame him? what a trooper! 
Lila wasn't feeling very good either right before Jett came. She was hysterical and I thought we would just have to put her to bed (hence the jammies) but once Jett came she calmed down. 

 holding hands....

 Baby Jett gave Lila some blocks. She loves them! Thank you!!!! We have had a fun morning building them up, knocking them down and feeling the soft fuzzy sides. Thank you so much.

A few weeks ago a friend of mine was telling me how she was following the story of an old classmate of ours from high school and his family. Cody and Tennille were trying to find answers about what was going on with their little guy Jett. Looking at what they were going through I could totally relate and reached out on facebook. We have been corresponding for the past few weeks and finally had them over to dinner last night so that we could chat and our angel babies could meet. In the meantime Jett has been diagnosed with pontocerebellar hypoplasia. Another rare genetic condition that will take him from his family far too soon.  What a sweet little guy he is! I just wanted to cuddle and love him all night but he wasn't feeling to good so I just had to chat with him and give him loves from afar.
Thanks Cody and Tennille for coming over and sharing your angel with us. You guys are awesome! We are so sad you are moving but we will keep in touch. Love you baby Jett!

welcome baby sienna ashly

 Sienna Ashly was born this week. We are excited for Mikey, Ash and Calder. Love you guys.

more tulips

temple square is so gorgeous this time of year.

smiles

 She loves her daddy! She laughs out loud when he talks to her.

I think sometimes in pictures its so hard to see my Lila's sweet personality. Lila is such a doll. She is actually pretty social. She smiles and laughs, even at appropriate times. She will smile when people laugh and she will smile and get excited when you call her name and enter a room.  She smiles when you blow on her, when you cut her nails, when you tickle her arms, when you click her teeth with your fingernail, when she goes into bright sunshine, When she is surprised, and she always smiles after a seizure. I think its her way of reassuring me that she is OK. These moments are the icing of my life. I feel so bad that not everyone gets to see Lila's personality, she is not as social with people she doesn't know,  but its there and she is her own little person. We are so lucky we get to see little glimpses of her spirit.

trying to be "artsy"

As we have been filling out adoption papers I have realized that I need more hobbies and be a more well rounded individual. Since I have been coveting felt wreaths on etsy I decided that I could save money and make one. I went to the craft store and by the time I bought everything it was the exact same price as the wreaths for sell! I wanted to tell the clerk never mind but I was too embarrassed.  Oh well, I was determined to be artsy! Here is how it turned out. Kinda cute.