Baby Steps

Thursday, April 12, 2012

Some beach...somewhere

The Koozers need a vacation more than ever! We need a sit on the beach doing absolutely nothing for a week vacation. Whew. We are juggling more than ever now with Justin transitioning to his new position, selling/renting the house, finding doctors in Knoxville, keeping up with therapies and appointments for Piper, spending every waking hour implementing strategies, routines and exercises with her and I could probably go on forever. I'm surprised I have time to write this! I thought teaching would be the most decision making I would do in a day but I guess it was just training for the decision making Olympics we are in now.

Piper has an interventionist that meets with us once a week to help us try things to promote her motor, social and cognitive development. We spend hours working on helping her do things that most babies do naturally, for example we are working on getting her to bat a toy. She did this all the time before her seizures started but hasn't shown much interest in her surroundings until recently. She is starting to notice toys around her which is a good sign. We are also working on teaching her to hold her bottle, hold toys, play with her hands and feet, and reach out for people or objects.

She also has a physical therapist that sees her once a week. She has taught me exercises to do with her to strengthen her neck, arms and trunk. She is actually pulling her body up to sit but her head still wobbles. Her head control is much better and when she is alert she does a really good job. She is getting stronger so the exercises are working. Now that she is getting so big (she is 18lbs 10oz and 28.5 in!!!) I am not physically able to support her body in sitting position and support her head too. We are looking at some adaptive chairs to help her sit and be engaged as well.

All of the information from both of these people is great but finding time to do it all is a challenge. I have to decide what exercise or strategy is most important and what she will benefit the most from at a certain time. I race the clock and most days we barely have enough time. My OCD tendencies are back in full force, some days this is a blessing, others not so much! And just ask Justin, telling me to take a break or not to worry will only get a "not so nice" response from me. With Piper, her routine is crucial and we can tell a difference on the days that are off schedule. (yes, I'm that crazy mom)

Piper will have an evaluation for adaptive technology as well. Our TI feels that Piper is motivated by bright colorful toys that make noise. She does not respond to stuffed animals that are not bright colors. We realized that we have a ton of stuffed animals and not very many bright toys that make noise. They will be making toys for her that are more sensitive to touch so that she can make the connection when she is playing.

Overall, she is doing really well and is making progress. We pray it continues. Piper and I both have a cold which made me very nervous because this is her first "normal" sickness!! I have no idea what to do!! Lol. I was primarily worried about an increase in seizures (which is typical) but she seems to be okay so far. Hopefully she has her daddy's immune system and will get over it quickly.

As far as everything else goes, we are showing the house to rent or sell, whatever comes first. We are going through a broker so background checks,etc will be done on possible renters. We actually have two showings tomorrow. You have no idea how hard it is to keep a house clean to show with a baby, two dogs and a cat!!! It's a never ending job :) One of us has the bright idea of having a yard sale this weekend too.....sure why not? It's not like we are busy or anything.

It's a good thing Justin and I both don't know how to sit still for long and thrive when we have a million things going on.

Monday, April 2, 2012

Post race update

We had an amazing weekend in Knoxville. It was great to see friends and family we haven't seen in a while. The race on Sunday was awesome and feel so blessed to have so many people supporting and praying for sweet Piper. I am shocked I was actually able to finish the half marathon considering my training consisted of a couple long walks with a stroller. I had planned on walking the whole thing and I ended up running half of the race. My time was under 3 hours so I beat my goal by 30 minutes. This is the third race I have ever done and the first half marathon so I'm pretty proud of myself! The night before the race Piper decided to stay up all night to remind me what I was going to be running for. I guess she had pre race jitters too.

While Justin was running he had a man ask him who he knows with Aicardi. Justin told him it was his daughter and asked the man if he was familiar with the syndrome. He said he is a pediatric neurologist in Knoxville and has worked with a girl who has Aicardi too. Justin told him we were getting ready to call and make an appointment in the next few weeks and he said he can't wait to meet her. What are the chances that out of over 7000 people in the race that the doctor we have been talking about seeing happens to run next to Justin and introduce himself?? Hello God, we hear you!

Piper was in a great mood all weekend. She barely slept she was so excited to see and hear people. The medicine is still keeping her seizures around 50 a day and they are still mild. She is slowly getting stronger but we have noticed that she is able to hold her head up for longer periods of time and can almost roll over again. It is definitely a slow process and we are continuing to be patient and celebrate everything she does. She will be getting physical therapy once a week along with visits from our early interventionist. We have many activities and exercises to promote physical, social, and cognitive skills. So far she is progressing faster in the physical area. We haven't noticed much of a change in the other areas but will keep working hard. No smiles yet but we can tell when she is happy by the "talking" she does. She is a blessing and constantly reminds us to be thankful for everything God has blessed us with.

We have decided that this race is just the beginning of many that we will do. We are going to continue to sell shirts and raise awareness for Aicardi. We have extra tee shirts if anyone did not get a chance to order. You can email me at or send me a Facebook message.

Once again, thank you so much for the prayers, donations, kind words and love that you have given us. We would not be where we are without you.