EEG

Lila's EEG looks better. Not normal, but a little bit better. She is still having abnormal bursts of energy in her left hemisphere. She has to go off the steroids (thank goodness!) so they are putting her on a anti seizure medication to see if that will help. I am really excited to get her off the steroids and see if that will help in her alertness and also in her comfort. Keep your fingers crossed for us!

What a good daddy!

Quinn and I were joking that our romantic dates have to be at the rainbow cafe at Primarys these days (actually pretty decent food). In this pic I asked him how excited he was to spend his days off at the hospital all day, this is the look he gave me. I am so glad he is here to be with me and to help lighten my mood. He has been so great.

What a little sweetheart!

one more picture....

I was going to add this to her eight month post, and realized I had forgot it. Look how Lila fell asleep the other day. So adorable. We don't get a lot of the "normal" stuff so thumb sucking is pretty darn exciting in my world.

Eight Months

Little Miss is eight months. The 27th is a little hard around this house. With each month that passes I get more discouraged. This month has been especially rough. Lila was put on a high dose of steroids and she has been having some adverse side affects. Poor thing is extremely puffy. Notice the large face in the photo. (Although maybe it was because they had her feeding pump set to high. She was gaining 65 grams a day. Normal weight gain for kids is between 9 or 10. She was so full.) She also has been whimpering in her sleep. Heartbreaking! She has been so lethargic. I am so excited for Thursday when we have her final EEG. No matter the outcome she will be taken off the steroids. I hope that is what is causing her to zone out.
Our neurologist wants to do a muscle biopsy as the next step. I am a little hesitant. I don't want to cut my baby. Especially if they are just going to come back and say all is normal, like everything else we do. I feel so bad for my little love bug. She handles it all with a patience that would put anyone to shame let alone an eighth month old.
Besides having our EEG on Thursday we are meeting with a group at Primarys called the Rainbow Kids. It's mission statement is to help families and kids who have life threatening illness. I'm a little sad that they have asked to take on our case. What does that mean?
Despite all of this Lila Patricia is as sweet as ever. Just a little cuddle monkey. I feel like she comforts me more than I comfort her.
Lila has been so lethargic that her therapists have told me just to hold her and love her and not make her work. (I bet you can guess how well that went over with me) But despite that we got a lot of fabric from grandma Kimball and our new favorite past time is listening to classical music while looking at the colors. Some days are better looking days than others.
Lila is getting so much more hair. It's really filling in and sometimes it looks like it has a bit of a reddish tone to it. If you go in the sunlight it is white, but around the house it looks very strawberry. Who would have thought I would have a little strawberry blond, blue eyed girl! She is gorgeous.
Love the baby legs.

sparkles

Is it bad that my eighth month old and I both wear sparkle shoes?

Spring Training 2011

Listen people. I know there is some serious seriousness going around the Kimball house these past days. So I must come before you to tell you, fun is a must in a time of stress. This pic will tell you all you need to know about how serious I am that the Cubs will win the World Series this year, Seriously! I learned by several sources that the Cubs have dedicated their 2011 bid for global domination to the Kimball clan, Lila in particular. I have every confidence that after 102 years in futility Lila's approval is the last ingredient to achieving the previously unattainable. Thanks Cubs.
This scoreboard has served as a bold reminder of every loss in the last 20 years of my families attendance of Chicago Cubs baseball. It ends now. The cubbies won every contest we beheld, a first. Coincidence? I don't think so Scooter. 76 degrees, sunny and lots of skin that should otherwise be covered. Yummy
When I look at this hollow ground I think of Ray Consela playing baseball with his dead dad in Field of Dreams. Now playing baseball with dead people is weird , but it makes you appreciate the American spirit of overpriced beer and under cooked wieners. I must say smelling the grass and feeling the sun on my overexposed dome are such welcome reminders of the rebirth that comes every year. It also give me a moment to reflect that in times of need or want the sunshine is just around the corner.
Some people say my dad reminds them of me. Funny, I was thinking the same thing. After he shaved his mustache he even looks kind of like me. It is because of him I have learned there is so much to look forward to and that I can utilize my gifts to help others. In my immediate circumstance, I can help my two most favorite ladies. I have to say a quick thanks for all that read this blog and pray my family. Courage, persistence, and a fixed gaze to those truths we hold to be eternal will lead us from the dark to the light. Kind of like the Cubs winning after all those years. Oh what a feeling when they win. I can say I payed way to much money to watch them lose for all those years and planned too many vacations with Kristi around where the Cubs would be playing but to experience ultimate victory is a feeling only a few of us will feel. COUNT IT!

touched

I have been thinking of all the experiences that I have had during this journey with Lila, while there have been more tears than I thought possible we have had some sweet moments. I have been very touched by the outpouring of love from people, and for that I would like to say thank you. I have received kind notes in the mail or from email/facebook from individuals that I haven't talked to in years. People that I have never met have been praying for our family. Friends have brought dinner (everyone knows that's not my specialty) Friends have taken over church callings for me without judgment or resentment. I have had friends sit and cry on the phone with me, both of us to overcome to even try to speak. I have wonderful family who have checked in on us and supported us through hospital stays, check ups, feeding tubes and treatments. Even kind comments on this blog have been appreciated and have helped to bolster me up.
I have been most inspired by the mothers of other special needs kids. Mothers who have been dealing with this for far longer than I have called to offer advice and an ear to listen. I am amazed by one mother who has never met me but who has put in hours of searching for resources and answers despite taking care of her own child with needs. Another mother who has been dealing with feeding tubes has offered her advice and her expertise. Another mother whose child who has a terminal degenerative disease has called me and checked up on me and offered to help me navigate the primary neurology world. When we got out of the hospital this time a sweet note with a bowl full of candy was waiting on our doorstep from her. In her note (I hope she doesn't mind if I share) she talked about how she found a way to cope. She gave me a little bracelet that said courage on it. She explained that she wears hers everyday to remind herself to be as courageous as her little one. She feels comfort to know that her and her daughter probably volunteered for this in the life before this. Those two thoughts have been on my mind a lot these days. Lila is such a sweetheart. She doesn't interact much but her spirit is overwhelming. She is special, and I know I need to become the mother that she deserves and chose. She is courageous, she's my hero.
I wanted to put a few of the quotes on here that she gave me because they gave me so much peace. I hope that they may give others some as well:

"This is Courage in a man; to bear unflinchingly what heaven sends." - Euripides

"Most of the heartache, pain, and suffering we would not choose today. But we did choose. We chose when we could see the complete plan. We chose when we had a clear vision of the Savior's rescue of us. And if our faith and understanding were as clear as it was when we first made that choice, I believe we would choose again." - Bishop Richard C. Edgley

"No pain that we suffer, no trial that we experience is wasted. It ministers to our education, to the development of such qualities as patience, faith, fortitude and humility. All that we suffer and all that we endure, especially when we endure it patiently, builds up our characters, purifies our hearts, expands our souls, and makes us more tender and charitable, more worthy to be called the children of God" - Orson F. Whitney

"Casting all your care upon him; for he careth for you" - 1 Peter 5:7

we're back

Bad phone camera pic. I also look a little beat. We didn't get our own room this time and my roommate was a little less than stellar. Apparently she is not on the same schedule as the rest of the world : )

We were once again admitted to Primary this week. We went in Thursday morning to see our amazing neurologist Dr. Filloux, he wanted to check in on our little girl to see how she is handling the high dose of steroids. I think we are all disappointed that she hasn't perked up. He decided to get blood drawn to test for horrible degenerative/regressive disorders and diseases. I really can't believe that this is happening...
After a three hour ordeal of trying to get some blood (they had to call the IV team down, apparently Lila has tough veins) we had to rush to the next department. My Pediatrician wanted Lila to have a swallow study. They hooked her all up while we watched on a screen her swallow some dye. She failed immediately. Lila has been having silent aspirations for who knows how long. Meaning she doesn't cough when liquid goes into her airway, and with every swallow a significant amount was going down her airway. They told us that we were being admitted and that Lila would need a NJ tube. Like our NG feeding tube, but this one had to be placed by a radiologist because it goes past her tummy into the intestine, it also connects to a continuous feeding pump. We are no longer allowed to feed Lila anything orally. The irony is that she had just perked up on her eating and was feeding like a champ.
While we were admitted Dr. Filloux suggested we repeat the EEG since we were already there and all. I was not hopeful in the slightest. Surprisingly though her EEG has improved!!! Dr. Filloux called us from his vacation where he had interpreted the results remotely. How nice, huh? So he decided to up her dosage to see if we can not just improve her brain waves but that we can hopefully normalize them. I am thrilled by these results but still a little frustrated by that fact that she is not perking up then. I hope her smile and coos come back to me soon. I am missing them so much.

Lila's new accessory.

First Tooth

Yesterday was a hard day. Who am I kidding, I can't seem to pull myself out of not having a hard day, but yesterday I was looking in Lila's mouth and noticed it was bit bumpy. After washing my hands (we are very germaphobic at our house right now) I felt around and yep, Lila has her first tooth coming in, smack dab in the front, bottom left. Tears started to pour. I don't want her to keep growing physically if she isn't making developmental strides. I called Quinn to tell him. I got out Lila has her first tooth before I started sobbing. Pour Quinn get's these phone calls at work a lot. Good thing he has an understanding boss : ) It's so hard. Already people are making comments on the street like, wow she is really tired huh? or It must be nap time. When it's not. Lila is just Lila. What do you say?
Lila is still acting out of it. She cooed for me on Saturday, I jumped up and started screaming (maybe why she hasn't done it since) but no smiles and not a ton of looking. A dear friend of mine Sandie, who has a 17 year old with ACC and who found me just from this blog and has since become a wonderful resource, told me that she knew of other kids who seemingly checked out during steroid therapy. I really hope that is just what is happening. I really hope that the EEG on the 23rd will show improvement and then we can wean her off and she will start to perk up.
Sandie also sent me to a woman's blog who has triplet boys who one has ACC (Ageneis of the Corpus Callosum) and had infantile seizures who also did the steroid therapy. It was sad and yet made me hopeful to look at this little guy, he is 2 now, walks with a walker and has trouble communicating, he used a computer to communicate, but he looked like a happy little guy who also played with his brothers, had favorite toys and loved his mom. I hope that is in Lila's future, that there are no underlying disorders or syndromes that we have our answer and that she will just take her time.

Six Years!!!

To start off our six year anniversary we had to take Lila in for more blood work at Primary's but after we had her vision therapy. I love vision therapy! Our vision therapist Sherilyn is a saint. She is the most positive person and always gets excited about Lila even if I don't think she has been making progress. Lila loves her light box, she reaches out to touch all the objects on them. I feel lucky that we got Sherilyn and that there are wonderful people out there wanting and willing to help us.
Lila still isn't her usual self. We took her in and she has yet another ear infection! So that could be causing her to not coo and smile. Honestly when will this girl catch a break??!!
We did hear back from genetics though, all of the genetic testing is normal. They are sill stumped.

Quinn is very very excited to have a big juicy steak! (what a goofball)

SIX YEARS!!! Wow, time is flying! We had a great anniversary celebration thanks to wonderful Grandma's who watched Little Miss for a good portion of the day. Thank you! We went to a movie, had an amazing couples massage and went to a romantic dinner. We were in need of a little couples time.
Happy Anniversary Quinn. This year we find ourselves in one of the darkest moments of our lives, but I am so lucky to have you by my side. You are my rock and my best friend. I love you.

New treatment

Our Neurologist said that Lila's EEG's are looking more and more abnormal. The abnormal bursts of electricity that were just in her left hemisphere are now also in her right. He thinks that even though she isn't manifesting physical signs he believes that she is having infantile spasms, or seizures. He recommends that we give her high doses of steroids. They don't know why it works but for some reason it can normalize the EEG's. It's pretty nerve racking to make these kind of decisions, but we have decided to go with his recommendation. Side effects are that she will be hungry (actually a good thing) she could get cranky and that she won't have an immune system. So we have to be really careful with her the next few weeks.
The Dr says that if this doesn't work we are nearing the end of his capabilities. We might need to think about seeing sub specialists around the country. Obviously this is pretty devastating. I feel like a broken record but please pray for us, pray for Lila please pray that this is what Lila needs and that she will be better. She has another EEG on the 23rd to see if her brain waves have normalized. We unfortunately have gotten use to waiting for bad news.
I am feeling pretty beat up and defeated. Lila, to me, seems to be regressing. We haven't heard her gorgeous voice in days and her visual activity has decreased. She also has stopped sucking on her hands, something that she was doing constantly a week ago. It's my worst nightmare realized. I pray that Heavenly Father is with us and especially with our little girl.

happy 60th Todd

For some odd reason Quinn got it into his head that he was going to shave his dad's mustache on his 60th birthday. His dad hasn't been without it since optometry school. Todd wasn't too excited but he was a great sport and went along with it. Here is his before and after pictures. He just doesn't look quite right .....

We all went for dinner at Bonzai. We had a great time. Thanks Kimball's!

seven months

seven months. Lila finally doubled her birth weight! 14.10. In this photo she is wearing her juicy couture from her grandma. She has already started to grow out of it, much to the chagrin of Robyn. She is very sleepy in this photo.