Walk by Faith

"Now faith is being sure of that what we hope for and certain of what we do not see. This is what the ancients were commended for." Hebrews 11:1,2

"We live by faith, not by sight." 2 Corinthians 5:7

By faith we have believed that one day Lily would walk. To be on the very edge of seeing the past unknowable is humbling beyond belief. We serve an awesome and mighty God. He has done and is doing this work in her life. All the glory goes to God.

Thank you, God, for letting us have a part in this amazing journey.

Frogger in Motion

I think the video says it all. From never even thinking to venture off of her play mat to long distance travel in a matter of days. Obviously you can see what motivates her - she realized she can take herself to where the food is served, whenever she wants. I am dreading the day she figures out where the pantry is!
As you can see the PICC line is not hindering her at all.

Adventures in Hospital Land

In the past 6 weeks we have gone through 3 rounds of antibiotics, taken one ride in the ambulance, spent two nights in the hospital, and learned how to administer IV drugs though a picc line. All for one swollen finger, one seizure, and one violent bout of the stomach flu.

So Lily developed some weird infection in her finger (probably from her own mouth). 3 rounds of antibiotic later and nothing is working. Infection spread to the bone. We just got home today from 2 nights in the hospital trying to figure out what to do. Ended up with a PICC Line, which is basically an IV catheter that stays in all the time and it runs directly to the heart.

Its sounds, icky, freaky, and super serious, and I guess it is, but Lily can do all of her normal daily activities. It allows us to give her IV antibiotics at home and she doesn't have to get stuck with a needle over and over again. And a way better option than having to stay in the hospital for 4 weeks which would have been the alternative. Yes, the picc line is in for 4 weeks. Three, one hour treatments per day.

In between rounds of antibiotics for the finger Lily had another seizure that sent us to the hospital by ambulance. On the way to the hospital we discovered the trigger for her seizure when she projectile vomited at her favorite EMT. Yes, the stomach flu can trigger seizures. After she threw up she spiked a 104 degree temp. In children like Lily who have seizure disorders their systems are very sensitive. Viruses like colds and flu can easily send them into a seizure. Again, this sounds serious but it is really very common for kids like Lily. She just presents her symptoms backwards. Most kids spike a fever and the rest follows. Lily seizes and then reveals the fever/cold/flu. These are considered febrile (fever induced) seizures and are unrelated to her sleep seizures.

I am pretty sure I have left out a ton of stuff about the last 6 weeks, but my brain is complete and utter mush right now. Anyway, Lily is doing awesome considering all the chaos. She is one amazing little girl.

A Mighty Power!

How many times can one kid blast off into the outer space of accomplishments?! I asked Mike if it was my imagination, yesterday morning, or were Lily's pants all getting too short again?
Well she had a follow up appointment at Children's and guess what? The child has grown 2" in the last 6 weeks or so since she was last measured! She has leaped into the 41st percentile for height. Pretty amazing considering that when she came home with us 2 1/2 years ago she wasn't even on the charts:-)
She hasn't been able to keep up in the weight department. Due to the new height it has now dropped her to below the 1st percentile for weight. If she repeats her typical pattern she will now spend the next several weeks adding some weight. She actually broke the 25 lb. mark which was a huge milestone, but she had a tummy ache over the weekend and dropped back down to 24 lb.
She is using her light weight to her advantage, however, and is taking flight in therapy! Today she decided it was time to do laps. She refused to sit down, she only wanted to stand, and then she wanted to walk. With one therapist holding her hands and one holding her hips for stability she then proceeded to march around the 8x10 carpet, not once, not twice, but 4 times!! We were all amazed, to say the least. I think her therapists are having to re-write all of her goals this afternoon because she just passed and surpassed a whole bunch of them.
Strong and determined are much to mild to describe this girl. Try charging warhorse, locomotive, launching space shuttle. Watch out world, Lily-an is coming!!

Treasure

Well I made it official this week. While I am not closing the door of the Purple Pincushion entirely, I am wholly and completely committed to a full time position outside of the shop. The retirement benefits were too good to pass up. My position is fully vested in the Matthew 6:19 plan.

"Do not store up for yourselves treasures on earth, where moth and rust destroy, and where thieves break in and steal. But store up for yourselves treasures in heaven, where moth and rust do not destroy, and where thieves do not break in and steal. For where your treasure is, there your heart will be also."

I am now a 100% full time MOM! Mike's business is really taking off and I feel like I can set aside my business at this point and focus on the much more important work at hand, helping Lily grow healthy and strong, loving and thanking God all the way. It is a weird transition for me. I have poured my heart and soul into my business for the last 10 years so that I would be able to do exactly what I am doing now, so that I wouldn't be under someone else's thumb. Now if I can just get out from under my own thumb.....Lol!

Wish me the wisdom and grace to be the mother and teacher that Lily needs me to be.

New Year, New Lily

Looks like 2012 has a lot in store for our little girl. For those of you who have not seen Lily since she started her anti-seizure medication in August, I cannot even begin to describe the incredible changes that have been taking place.
I can't even count the number of times, before medication, that I described Lily as strong, determined, and motivated. I never thought I would see that drive and determination increase even more. The girl has become a high speed freight train of accomplishment, focus, and yet more determination.
Today at lunch was the perfect example. One of the major goals Lily has had in therapy since day one has been hand to hand transfer of objects. This shows that the right and left sides of the brain are communicating with one another. This is a goal typically achieved somewhere in the 6-12 month age range. We have worked on this with Lily to no avail these past two years.
So what does she do today, completely unassisted and unprompted? Not only does she complete a precise hand to hand transfer once, not twice, but three times! All while making the additional accomplishment of taking the cracker (object she was transferring) directly to her mouth to take a bite out of it. Another area we have been working on with her, being able to feed herself.
God willing, may 2012 be a year of amazing firsts for Lily!

Christmas Tree

Here is our Charlie Brown Christmas tree! Living in a 950 square foot apartment doesn't leave a lot of room for a big tree. I guess we could look for a really, really skinny, tall tree because we have 9 foot ceilings, but oh well:-) This is actually the first Christmas tree we have had in the apartment since we moved in here 6/7 years ago! We have always spent the holidays with family so it never made sense to put up a tree that we weren't even going to be home to see. Even with a small tree floor space is at a premium so the tree found a home on top of Oscar's kennel.
Can you make out our little angel on top of the tree? Lily's pre-school class made an ornament with each child's picture in the center. She's a perfect tree topper:-)