Wednesday, February 16, 2011

Small Milestones = Huge Victories

We waited in angst for nearly four months for this appointment. It was early Novemeber when our Early On RN suspected that Caedyn may have cerebral palsy. It was dreadful news. I couldn't wait till February to share this information with Caedyn's neurologist so I called in a favor to our pediatrician, Dr. Schipper. They made this appointment as quick as they could get her in and we have waited up until this day for an answer. It was both a nervous and anxious feeling for us as we waited the past few months. Nervous because you don't want anyone to tell you your child has CP and anxious because we wanted a reason for her not hitting her milestones like "normal" children her age, but didn't want her to have CP. Make sense? Not really. Nonetheless, it was a long wait.

We met this morning with Dr. Nancy Dodge. She specializes in pediatric neurodevelopment and can diagnose just about any physical and cognitive condition there may be. She asked a slew of questions regarding my prenatal history, what milestones Caedyn has reached, family history, reviewed all her PT/OT and feeding therapy notes and did a physical exam. She asked us at one point, "is she always this good natured?" We smiled and had to agree. We are so blessed she is usually one happy little girl. After a thorough evaluation, she left the room and told us she would be back in a few minutes to talk with us. That was the LONGEST few minutes of my life. Literally.

When she came back in she sat down and hesitated. My heart was probably beating out of my chest! Dr. Dodge said she couldn't say that Caedyn had cerebral palsy. Not even an inkling pointed to her having the disorder. I was fighting back tears. Praise God! Her reflexes are very normal unlike a child with CP. She has some mild developmental delays and functions at about a 13 month old level. She cannot explain why. She offered up genetic testing to find out exactly what syndrome is causing her delays. When we asked if it would change her current treatment, the answer was no. We are doing exactly what we should be doing in regards to physical therapy. At this point for us, the testing isn't an option. It is likely she will have a long road of therapies and hopefully in time catch up to her peers. Dr. Dodge was uncertain about her long term development but did mention she could have a learning disability in the future. All I kept thinking was, "I can totally work with this". I know in time she will catch up. We left the office elated to say the least.
So for now, we continue therapy and work on strengthening her motor skills. And all those milestones parents take for granted, we celebrate as a huge victory.

Monday, February 14, 2011

An Outward Expression of an Inward Change

On February 13, 2011, Jeff, my mom and I were baptized again, as adults. Jeff and I were both originally baptized as infants in the Christian Reformed Church. We also carried on the tradition with our children when they were babies. While we fully believe in dedicating our children to the Lord as infants, we also believe that there comes a time in ones life where, as an adult, it is important to let the world know you love Jesus Christ. Jeff and I have been through a lot as a couple. I am willing to bet that we have been through more than what most couples have or will ever go through. Things came to a head in our lives when Caedyn had her first seizure. It wasn't until the last year that we fully entrusted our marriage and our children to the Lord. Up until that point, we carried on in our lives as most people do, with a nice house, beautiful children, good jobs and very minimal struggles. We had everything but the white picket fence and took A LOT of things for granted. :) It is amazing what God will do to bring you to your knees. Job loss, a marriage heading in the wrong direction and a child with an unexpected long-term medical condition doesn't usually make for a very positive outcome without a massive change. We both agreed it was time to let go and let God. We are excited to work on this journey together. While it can be hard to put God first in our busy lives, we know it is imperative for both of us personally, as a couple and a family. We are excited for what the future holds for all of us and know that we all are part of His perfect plan!

Jeff giving his testimony

It was FREEZING! My beautiful mom giving her testimony

Thursday, February 10, 2011

EEG Round 3

Our third EEG and not our last. The third time must be the charm. Aside from our not so pleasant experience with HDVCH, Caedyn's 24 hour EEG went well. She tolerated being hooked up to multiple wires and her EEG backpack with ease. I am thankful for that. This EEG was to rule out nighttime "silent" seizures that occur while sleeping. As if we don't have enough anxiety during wakeful hours with Cae, for the past few months, we have added seizures while sleeping to the list.
Caedyn was her wonderful happy self as usual. She took each poke and interuption with stride (except at 4am, that was no fun). The results came back positive with no sleep seizures and it was overall normal. Normal doesn't mean she doesn't have epilepsy, normal means well controlled. This was good news to hear! We have our initial consult with the neurodevelopmental specialist, Dr. Nancy Dodge next Wednesday. We are anxiously awaiting the news on the possibility of CP. Please pray that we get the answers we need to understand and cope with Caedyn's developmental delay. Please pray that in the next six months all of this will be a blur and she will be developmentally right on target. We are all patients of the one true physician and we know He heals!

Seriously, this child is a trooper. Who else would be this happy all caged up with a head full of wires?

Even post EEG (in my opinion, the worst part) she smiles!