WALKING!!!

I am so incredibly behind in my blogging. It is quite sad really. I am really going to try to get back on the bandwagon, although, with two boys in Little League and daddy gone most nights, I may just be too exhausted to even turn the computer on. That being said, what better way to re-start my blogging than with a huge HALLELUJAH! Caedyn has taken her first "real" steps and is finally meaning business. Ha! I wasn't so optimistic this day would ever come. She started taking her first steps the first week of March, just one week after we had her orthotics fitted (which are purple with green polka dots, by the way). She definitely still needs the braces as she is not real stable and hesitant with each step. We are excited to get them after 6 weeks of waiting, on April 13. I posted a video most of you have already seen on Facebook. I cannot get enough of my diva in training. Seriously. God is so good!

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.

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

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!

Boo on the stomach flu!

I am waiting for Caedyn's big break. Waiting and waiting.....
I hear the neurologist saying, "the better seizure control we have now, the more likely she will outgrow her epilepsy". So I wait. I wait for the day I can say Caedyn has been seizure free for a year. Two years. Ten years. I am having a hard time believing that day will ever come. I am having a hard time believing that she can outgrow this disease. I do have faith that God has a plan, I just hate it when my faith is tested.

We got to visit the new Helen DeVos Children's Hospital on January 15. Not how we wanted to check out the posh, new digs everyone in GR is talking about. After a round with the flu three months ago, we felt like we knew exactly what to expect this time around. I am getting better with this whole seizure thing. Unfortunately. No one should have to "get better" at dealing with seizures. I didn't freak out and call the neurologist after her first episode Saturday morning, we waited till the second. Though we were hoping there would be no second, we knew it was pretty inevitable because of her history. So, after a trial of oral Valium at home, we went in. We are so thankful to be able to drop the boys off at the drop of a hat with our family. I personally was very thankful that Jeff was home again for this round. I dread the day he is in Texas and I have to deal with this myself. I pray the good Lord doesn't EVER allow that to happen. I may just crack.

After nine seizures in less than 18 hours, we finally got them under control. I cannot imagine having to deal with this disease without having a medical background. I am thankful for my education! We stayed for three days and finally went home on Monday, January 17. She is such a good sport. I don't know what I would do if she weren't so complacent and tolerant. Lord knows, I am not. So we plug on. This won't be the last visit to HDVCH unfortunately. We have a scheduled EEG and numerous specialist follow-ups in the next couple weeks. I am looking forward to getting more answers for my beautiful "Fiona". Thanks for your continued prayers!

Miss Caedyn at 16 months - Where did the time go?

So, I am a little behind on my blogging these days. I must admit I enjoy it once I get writing but it takes a lot to get me started. I often find myself at a loss for words and get frustrated because my blog is not near as pretty and well written as a lot of the ones I follow. Oh well.
I start this post with amazement and sadness that my baby is already 16 months old. Where did the time go? I am sure having a whirl wind year of health issues, job changes and extracurricular activites doesn't help. I wanted to share some stats of my growing girl. She is already 33 3/4 inches long and 26.2 pounds. She is still not walking or talking much but knows how to get what she wants. It is my theory that girls learn this technique at a very young age and she is proving this everyday. We must recently have started the art of temper tantrums. She cries so hard she often hyperventilates and has BIG crocodile tears. It is quite ridiculous and if I didn't fear she would have a seizure, I would toss her little hiney in her crib and let her scream it out. This, she knows it is to her advantage. Stinker. I have attached a very mild form of what we see daily. How can you get upset with that face???

She says words like "momma", "dadda", "hi" and the occasional "kitty". I am not convinced she knows how to use all these words in context yet because she doesn't actually call for me of Jeff. I am praying for that real soon. We are scheduled to be done with feeding therapy in a couple weeks. The other night she actually ate an adult size portion of spaghetti which she wouldn't do just a couple months ago. She is still eating smaller portions and very small bites but we have graduated to sausage, hotdogs and french fries without choking. I am so excited about this! We start another 12 week stint of PT at MFB to work strengthening her low muscle tone. It is likely she will need to wear ankle braces for some time but we will be evaluated for that too. I am hoping she starts walking unassisted real soon. While she has taken a couple steps alone, the whole process has been a tease. My arms are growing real tired of carrying around a 26 pound child so anytime she wants to start walking would be excellent with me! :)
All in all, we are happy with her progress. As she grows it is obvious her delays in gross motor, speech and a small amount of fine motor skills. Thankfully we have an excellent source of therapy right at our fingertips. By 18 months, I am hoping for strength in all three. For now, we count our blessings at how far she has come. We praise God she is happy and healthy!

Leaving a Legacy

We said goodbye to a very special man on January 5, 2011. Grandpa "Case" Potts passed away on his 93rd birthday. I cannot speak more highly about the man I have called Grandpa over the last 10 years and our Case's namesake. He loved his wife of 68 years, his five children, 18 grandchildren, 37 great grandchildren and 2 great great grandchildren oh so much. He loved our Lord Jesus Christ and it showed in everything he did. We certainly will miss you Grandpa. Our Wednesday lunch gatherings will never be the same. Thank you so much for leaving us a legacy of love, faith and memories to last a lifetime.

Christmas 2010

Christmas is always such a busy but welcome time for our family. We visit 7 different families each year with the kids, presents and food to pass in tow. While I enjoy the hustle and bustle, we are always so thankful when the two weeks of family gatherings come to a close. No offense anyone, it just can be exhausting! Nonetheless, we are blessed to have such supportive family in town. Here are a few pictures of our 2010 Christmas Holiday.

Case asked for Stinky the Garbage Truck this year.

I think Cae plays with it more than he does!

Sheer excitement to have received a Beyblade set!

Would have been a cute picture if someone wanted to cooperate!

Addy, Cam, Eli, Olivia, Zach and Case at grandma and grandpa Kreuze's Christmas Eve.

Alexa is such a great cousin! We can't wait till she can start babysitting!

Great Aunt Jodi made Caedyn a couple new "babies"

Just wanted to show the Potts Christmas gathering. This is about 3/4 of the family.

I think we counted off till 62. Awesome!

Caedyn and her new shopping cart.

My mom made these FABULOUS purses for Jonelle and I

for Christmas. Along with the wool mittens, a new outfit for Caedyn and a hat.

She is amazingly talented!

The real Reason for the Season

This year I braved the mall with three kids alone. Not totally alone as I went with Jonelle and her two boys, but I was a little nervous to venter the crowds without Jeff as a back-up. Nonetheless, the line wasn't too bad at Rivertown Mall this year and the kids surely didn't mind waiting! They were all so well-behaved and it couldn't have gone any better.

While I love the idea of the jolly ole' elf himself, Jeff and I are sure not to dismiss the real reason for the season. Each year the kids get a present or two from Santa and they know the rest are paid for with dad and mom's hard earned dough. We take the time to make sure that the kids understand that Christmas is not about all the presents, pretty lights and Santa. It is the day of Christ's birth and the real reason we celebrate. This Christmas, we wish you all a very blessed Christmas and the happiest of New Years!



Caedyn was mesmorized with Santa's beard. I am just thankful she didn't scream!

Motherhood = Multi-tasking

I'd like to think I am a master at multi-tasking. However, just when I seem to get the hang of a schedule and doing everything a working mother of three does, I get a nice little reminder to slow down. That is pretty much how I am feeling about this feeding therapy at Mary Free Bed. Juggling therapy was okay at first. I was able to get the 2-3 daily exercises done on a regular basis at home, but now, add about 10 more exercises at repititions of 3-5 times daily, I am having a hard time keeping up. While I find therapy to be very helpful, it is just becoming annoying. I won't sugar coat it. It is. Mondays and Wednesdays are days I dread. I used to enjoy my Wednesday off. Now, it is filled with PT and OT and feeding therapy. Sick of it. I have tons of holiday stuff to do, including making Christmas cookies with the kids, and don't even feel like I have time to do that! I am running all over town on my day off, how fun is that? I never thought I would be wishing for more time to clean my house and get chores done that so desperately need my attention. To top it all off, we just added another hour of physical therapy at MFB every Wednesday. Excellent. I think I am in dire need of some therapy myself! :)

Okay. Okay. Enough of my whining. Despite all of the inconveniences of therapy and my busy life, MFB has really helped Caedyn. She is finally self-feeding but oh so picky. Cam and Case will eat just about anything in sight so having a picky eater is new to me. Quite frustrating if you have never had the pleasure (insert sarcasm) of dealing with a fussy eater. Caedyn loves PB & J, mac and cheese and of course, her Gerber baby oatmeal. She will occasionally eat chicken in small bites, pizza and mashed potatoes. It is still taking her a long time to eat but we try to keep our meal times to around 20-30 minutes. Caedyn finally has four more teeth and I think that is also helping feeding therapy to stay on the right track. We have missed the last couple sessions due to fever, snotty nose and an ear infection but plan to get right back on the horse next week.

I am hopeful that therapy continues to steer Caedyn on the right path and hopeful that February will come quickly. Not only will feeding therapy be complete but we also have our appointment with the Neurodevelopmental Clinic at HDVCH to get some answers in regards to the cerebral palsy diagnosis.
Continue to pray for Caedyn and that there will be no more seizures despite her current illness, that she continues to thrive well at therapy and that I can find more time in the day! :) Thanks for all your continued support..my next post will include pictures. I promise!