Monday, June 27, 2011

eleven months

My baby is Eleven months today. I can't believe it.
Lila is doing better with head control. Still can't hold her head up but she is able to push back and bob around before dropping it, but I must admit she is trying harder these days. She use to be pretty passive and now she is actually trying.
She is kind of off and on with her vision. Some days are better than others. But our vision therapist is really excited by what she sees every time she comes, so I have to take comfort in that since she sees kids who have vision impairments everyday.
Lila has been so happy lately. So willing to smile and even to laugh. We have gotten a few big bursts of laughter. She is smiling at stimuli and not just randomly so it's so enjoyable to interact with her. She loves to use her voice. My favorite is when she lets out a large yell that even scares her a little bit and she jumps at her own voice and then laughs.
Unfortunately she is still having seizures. They are horrible to watch and just break my heart but I really don't want her to be on any meds because I feel like she is much more interactive without them. So I hope that they stay relatively small and we can stay off medication.
We have certainly been blessed to have our little lady in our home. She radiates pure love and joy.

Friday, June 24, 2011

Little personality

She smiles so easily now..
Lila is slowing showing us her personality. It has taken a little bit longer than most kids but we do get to see it from time to time. Lately she has been giving me kisses. Which of course I ADORE! She flips her head up and sucks on my cheek. When I tell her thank you for the kisses she gives me a little smile.
She also has a little mischievous side. The other day after I put her to bed I was hearing her gasp. I rushed into check on her put was just met with a huge grin. I gave her kisses and left only to hear the gasp again. I stayed in longer to watch her but she didn't do it again. I left and a moment later gasping. I called the on call doc scared to death that a hospital stay was looming. He, not knowing Lila, was super concerned but said it was up to me. I waited till she fell asleep and there were no more gasps. As I was telling my mom and sister about it the next day they just started to laugh. They said have you ever thought she was doing it for attention? I hadn't. I guess I didn't giver her enough credit.
Last night Quinn and I were walking past her room when I slowly closed her door. Immediately a huge gasp came from the crib we ran inside and was met with a huge grin. It lasted quite a while as I explained it was bed time. So hilarious.
She also has the sweetest little soul. While we were in the hospital I would notice that when I held her hand she would rub her thumb against my fingers. Seemingly to comfort me much more than I was comforting her. At fist I thought that is was a fluke but she has been giving me these types of loves for a while. We have noticed that she will put her hand on ours and give it a squeeze or a rub. What a sweetie.

the mountains

The river sounded a bit to much like her noise maker at home, she actually took a nap!

So pretty!
We took a little walk up the canyon the other day. It's so beautiful.


I came home today to this painted on the wall. I guess Quinn has decided to paint this wall tan, and took advantage of my LOVE sign.

Tuesday, June 21, 2011

muscle biopsy

The scar is much bigger than we thought it would be.

Lila's Doctor called from Primary Children's today to let us know that her muscle biopsy came back. Lila had 9 different mutations in her muscle DNA but according to the scientists they are not significant mutations, meaning they wouldn't cause Lila to be the way that she is. I'm sure we would all be surprised to know how many mutations we all had. They want to get a blood sample from me to see if I have the same mutations then we would know with 100% certainty that her mutations aren't causing whatever is going on with her. This test concludes all that we can learn from the muscle biopsy. Which everything else, the staining and such, it all came back normal.
It's pretty bitter sweet for me. While I am thrilled they didn't find anything, I am heartbroken not to have any answers. No help with trying to predict how her future will go. The muscle biopsy is the last in a long line of tests. Primary children's is officially stumped. We now will only see our Doctor for checkups and in case new problems present themselves. Our doctor has gotten in touch with a specialist in San Fransisco who deals with children with ACC to see if he would like to see us, or we will try and send off her results to the Mayo clinic.
I'm pretty defeated. Part of me wants to fly all over the country to see what all the specialists know and part of me just wants to take Lila and never walk into a doctors office again.
I believe that Lila had a seizure today. Her second if I am being honest with myself. I hope and pray that more adverse symptoms are not looming around the corner but part of me is bracing myself for more horrible news to come. I don't know how it can get much worse but from watching a dear friend I am reminded that it always can. I have to wonder how much longer can this go on? Stuck in this frozen moment of no progression and yet not really getting worse. Not having any answers. It's a pretty painful place to be.

Sunday, June 19, 2011

Happy Father's Day

Happy Fathers day to the best man I know! To say that Quinn is an amazing father is quite the understatement. Anyone that knows us knows this to be true. Quinn is incredible. He loves this little girl with more passion than I thought possible. He is the glue that holds this family together. His positive attitude is what keeps me going and his knowledge and faith in a bigger plan gives me perspective. To watch Quinn love and hold his little girl is the most beautiful image that I have ever seen. Quinn has so much faith in his girl. He is always encouraging and willing to do whatever he can to make Lila reach her potential. He is the definition of a hands on dad. I am so so lucky! I am lucky that he does everything in his power to lighten my load and to always spend as much time as he can with his daughter. I feel so blessed that he is my husband and Lila's dad! We love you so much Quinn. Thank you so much for dragging me through this life, even if it is kicking, screaming and sobbing all the way. You will always be the best thing that ever happened to me.

Thursday, June 16, 2011

Second opinion

Several months ago I started to have the feeling that I should seek a second opinion about Lila's eyes. I kept pushing it out of my head thinking what else could they tell me? She had/has cataracts and needs contacts what could be so different? It took a conversation with my old (beloved) vision therapist to make the call.
I called the apparently "guy to see" in Utah and made an appointment. It took several months to get into him, we saw him the beginning of May. He looked at Lila and immediately asked if she had officially been diagnosed with Aicardi syndrome. My heart sank. I found this syndrome when I was googeling and it's not a good one. I said she hadn't, he seemed skeptical. He looked at the past doctors notes and finally told me that he didn't agree with his colleague and thought Lila was wearing the wrong prescription in her contacts. For the past ten months!!!! He said he wanted to put her under anesthesia and do an exam himself, he wanted to measure her eyes, check the powers of her prescription, do an VEP (visually evoked potential) do some photography of her retinas, optic nerves, etc. I was nervous yet thrilled that we were revisiting the problem. (Our last Doctor had said he had done all he could and just check in from time to time)
We started to set up the appointment, they said the soonest was two months away. That was pretty sickening to me. I was a bit panicked to get it done since she had already had the wrong prescription for so long. I called relentlessly. I feel very bad for the people at the Moran Eye center. In the end we scheduled it for today. Just six weeks from the time I was told she had the wrong prescription.
I was just sick all week. This was the same procedure that was the beginning of all of Lila's health issues. The last Doc had done these same tests and concluded that he wouldn't do surgery because frankly the brain was not functioning enough to do so. Only the MRI, which showed her brain was intact changed his mind. Suffice to say I was very scared that today would be another tearful and tragic experience.
Here is what we learned. Lila does have small and pale optic nerves but her VEP, or all the info going from the eyes to the brain is in the NORMAL range! Low on the scale, but on the normal scale none the less! She does NOT have retinal lucunea, the tell-tale sign of Aicardi syndrome. She is near sighted but as of right now she is not going to wear her right contact lens. We have an appointment with another doctor to fit her with new contacts based on what the measurements found today. Dr. "H" says that he has every reason to hope for her future vision wise. We will see him regularly and start patching her eyes in the hopes of strengthening them.
It was kinda funny when the Doc was telling us the good news Quinn let him know that he and his dad owned an optical clinic (so they could talk in medical terms and Quinn would understand) , the doc looked at our name tags and said "oh you are those Kimball's! Kinda a big name around these parts for optometry." I'm starting to think Lila didn't come to us by accident. How blessed we feel that she has all the support and all the opportunities to reach her full potential.
Tears today, but definitely tears of joy. We feel so blessed to have this good news.

Tuesday, June 14, 2011

please pray for Callahan

During this experience with Lila I have always said that a blessing that we have received is to meet amazing people. Two of those people is Nikki and Callahan. They are such a great couple. Their daughter Eliza has a rare neurological disease called MLD that is degenerative. They have really shown me what it means to take a trial and turn it into something positive. Nikki stared Eliza's library and Callahan started team give, a charity to help those with neurological disorders. Nikki has been so supportive and kind to me and has really helped me deal with Lila's situation. She reached out to me when she learned about Lila and it has made such a difference in my life.
They had us over for dinner one night and the image of Callahan and Quinn sitting on the couch still makes me teary. Callahan was holding Eliza and Quinn was holding Lila and they were talking about how much their girls had their hearts and how special they were. There is just something about a dad holding his little girl, especially these sweet angel kiddos, that tugs at the heart strings.
Callahan was in a cycling accident this weekend and suffered a spinal cord injury. At this point he can only lift his arms slightly and move one leg a little bit. His hands, fingers, feet, toes and leg can't move. I am putting this on here (I hope Nikki doesn't mind) because I really believe in the power of prayer and have been touched by all those, even those I don't know, who have prayed for my Lila.
You can learn more about Eliza and how Callahan is doing here


in case you can't read it, it says: I may not have millions or very much hair but Kristi my darling to have and to hold you leaves me with no cares. (notice in the last picture I am looking at Lila saying "oh Lila" and Quinn is saying "no cares here")

Robyn made me this beautiful pillow. She is so talented

Do you think it says something about me that my family always picks out princess themed cakes for me even though I am 28 years old? hmmm.....Thanks mom for getting me my favorite! You always make birthdays special.

I had a great 28 th birthday yesterday. Quinn decorated the house with balloons and a comic strip (blogger is not putting pics in order for me lately) that was adorable! He brought me flowers, gifts and took me out for sushi, Yum!
My family celebrated two weeks ago with my favorite dinner. (sorry dad, turkey again!) Thanks so much mom, thanks also for spending the day with me yesterday! The Kimballs had dinner for me and Jonah on Sunday, once again a favorite. Thanks so much everyone!
I think this was the first birthday that I actually felt kinda old. 28. Crazy. I thought I would be so much more "grown up" by now : )

its a love hate thing

Lila's therapist gave her this new toy. It's super sensitive to touch and it's incredibly loud and slightly annoying, but Lila can do it and she likes it. She concentrates very hard and pushes her hand down against the ball and it whirls the confetti around and plays music. i can't tell you how cool it is to hear it from another room, if I'm running to put stuff away I can hear her playing. We haven't had that experience before. It's pretty wonderful.

Lazy Sunday Afternoons

Love lazy Sunday afternoons out on our deck. Heaven

Thursday, June 9, 2011

boy scouts

Our new vision therapist gave us this board that was made by the boy scouts. Every time I look at it I smile. I think of cute little kiddos like my nephews Ben, Josh, Nick, Jonah, Kimball and Eli putting it together for the visually impaired and it just warms my heart.

Vision Therapy

Our vision therapist Sherilyn was let go last month, for as far as I have been able to figure out, going above and beyond her job description. I am so angry at the Utah school for the deaf and the blind! They let go the best therapist with no explanation. Helping these kiddo's is her passion. I can't even tell you how sad we are. She was AMAZING!!! She did such a great job and we are trying to figure out how to keep her in our lives. She always had the cutest activities and was so positive and reassuring. I adored her. These are pictures that she gave me, she took pics every session and made them into a CD. We sure do miss her!

Thursday, June 2, 2011

rolled to her side!

While I was out running errands today Quinn called and said your daughter just rolled onto her side! I was so excited! Then this afternoon she showed me her new trick. Way to go Lila!