Swallow study update

We met with a therapist today at Mary Free Bed for an evaluation and swallow study for Caedyn. The results were not what we had prayed for, but expected. Due to low muscle tone, Caedyn's swallow study came back abnormal. While she is not aspirating much food, if at all, she is still working hard to eat "real food" and drink most liquids. The swallow study itself was very interesting to watch. Caedyn was placed in a high chair and while fed some of her current favorite foods (mixed with Barium) while we watched where it went and how she swallowed. She did real well with PB and honey which the PT doesn't quite understand. She swallowed without much problem at all. She had trouble with her mac and cheese, applesauce and thin liquids. She did okay with yogurt but not well with a bite of cookie. It is obvious thickness and viscosity play a huge role in why she refuses to eat. She swallowed an awful lot trying to move the food down her throat and often it even got stuck under her tongue and on the roof of her mouth. She is at risk for aspiration pneumonia so we must be real choosy from now on with what food we feed her.
We start bi-weekly feeding therapy on Monday. We meet with the therapist as well as a dietician at MFB to set up a feeding plan to get her to eat the food she is having a hard time with and strengthen the weak muscles of her mouth and throat. Hopefully by February, we will be eating most food kids her age like to eat.
I can't believe how much I have taken for granted what it takes to eat at mealtime! It was amazing to see what kind of effort goes in to keeping our bellies full. We continue to move on to another chapter in Caedyn's life developmentally. I pray for strength for her and our family as I am sure therapy itself will be taxing as well as maintaining therapy appointments working full time. Thanks for all the kind words of support for all of us. I am humbled by all the wonderful people there are in our lives.

Boo!

I love Halloween. There is something about the excitement in my children's eyes that gets me. I love picking out costumes with them, buying loads of candy to pass out and getting them dressed three hours before they are supposed to go out. I think I secretly I also love it because I remember how much fun it was to trick or treat with all my neighborhood friends. And yes, when a teenager, throw together a costume and be one of those kids that are "too old" to trick or treat. GRRRR....

It seems like the last few years we have had rain and 40 degree weather that cut our festivities short. This year, the weather was great. No rain, a little chilly but very tolerable. Cam chose to be a ninja once again (too bad last year's costume didn't fit), Case was a dragon and Caedyn was a ballerina. The kids looked so stinkin' cute!

Our neighborhood caters to a lot of kiddos each year and I usually go through close to 300 pieces of candy. This year was no exception. I think we had a more trick or treaters this year because the holiday was celebrated on both Saturday and Sunday depending on where you lived. It is so nice to live in a subdivision where all the parents know one another and where we can walk with our kids or let them run ahead and not worry. The majority of the neighborhood even incorporated a new adult only trick or treat festivity as well. :) It was a great night.


Caedyn caught red handed in the "candy" jar.

This picture of the kids makes me laugh. Case and his facial expressions are priceless!

An agonizing U-turn

I will spare you all the majority of the details of our last month. It has been hard. It has been exhausting. It has been emotional. Caedyn had her first seizure in four months on October 14. I never was a real germaphobe before that date. Sure, I had the boys wash their hands before dinner and after using the bathroom, but never was I as manac about it as I am now. Caedyn's plethora of seizures started after she got the stomach flu. She couldn't keep her meds down and you can all guess what occured after that. She was in the hospital four days and had a multitude of episodes. Too many for me to remember. It was very reminiscent of the last time we stayed at HDVCH. So, yes, in order to prevent any more illness and quite possibly seizures in my house, I am officially what one would call a germaphobe. I think you would be too.

We are all on the mend now and Caedyn is doing much better. The newest turn of events in regards to her development is a diagnosis any parent would dread: Cerebral Palsy. We met with our CSHCS nurse, Diane last week. She has been following Caedyn since her epilepsy diagnosis and monitoring her development. Unfortunately, this visit was not pleasant. Caedyn's motor skill set has widened and not narrowed. Out of probably 25 developmental milestones children her age should be doing, I could attest to maybe one. While she has finally started crawling, it is quite wobbly and insecure. She is still uncoordinated in most of her movements and her hand gestures have gotten more prominent. While deep down in our hearts we knew that there may be something else going on with Caedyn, the diagnosis is likely clear. Jeff and I have decided to pursue this possible diagnosis as soon as possible. We feel like if we jump on more therapy, Caedyn has a good shot at being able to live with her disabilities, though hopefully mild. Interestingly enough, 50% of children with CP have seizures. We are starting to wonder if she was born with this and not the epilepsy and maybe her seizures arise from the CP. The neurologist has started a referral to the neuro-developmental clinic at Helen Devos Children's Hospital and we should have an appointment asap. We are anxious to hear the diagnosis, outcome and how to better help our child grow.
We ask that you continue to pray for our family. This possible diagnosis, in addition to the seziures, is quite overwhelming. We know, as always, God has a plan!

JPS Football - Fall 2010

Baseball and Football - Cam's two favorite sports. Thankfully, they are in opposite seasons to keep me sane and not queen of the carpool. This is Cam's final year of flag football with Jenison Public Schools at his home school, Bauerwood Elementary. The final game was played with about 6 other flag football teams from the surrounding Jenison area, at JHS. The boys thought it was so cool to be able to play on the big field!

The determination in his face is priceless.

Klackle Orchards - Fall 2010

Halloween is almost here!

Every year we make a trip to Greenville, MI and visit Klackle Orchards. This year it was 68 and sunny. BEAUTIFUL weather! We started doing this when Case was a baby and have made it an annual trip ever since. They have apple orchards, pumpkin patches, wagon rides, tractor rides, live animals and bounce houses just to name a few. While their donuts don't compare to Post Farm (I think they have the best donuts ever!), they are also homemade and worth every calorie. While I must admit that our trip was more difficult with Caedyn this year, we had a great time as family time always is!

Every year we love to see how much the kids have grown!


Caedyn loved the bouncy, jumbo Twister board

Content to be in her stroller..we knew it wouldn't last long!

ONE - Really?

It makes me sad to start this post. Our sweet baby girl is already ONE. No way. I refuse to believe it. Not only does this mean I am one year older, it means that our last baby is no longer that, a baby. Sniff.Sniff.
We celebrated Caedyn's day hosting a big bash with family and friends. The 50+ people that congregated at our house was a true indication of how blessed we are to have such a strong support system surrounding us. It was a great time. We had burgers and hot dogs and of course, birthday cake made by Grandma Hennip. Who, as most of you already know, makes the best cake in town!
When I think back at the first year of Caedyn's life, I can't help but reflect on how blessed we are to have her in our lives. I never would have imagined that she would change our lives so drastically. Children often do that anyway, but this has been different. She is such a good baby, still doesn't win points in the sleep department, but happy nonetheless. She has always pretty much just had a "go with the flow" attitude. Then again, I think the third baby doesn't have much choice! I really thought that having three kids was going to be crazy but in fact, it was the opposite. One would say it is because I am a dictator when it comes to schedule, but I think it has saved us in the long run! It also helps that Cam and Case are at independent ages and are usually willing to help their mom (I am waiting for the day that will change). Don't get me wrong, we have certainly had our days! Caedyn has not only made our family LESS chaotic and more structured, but brought us so much closer together than ever before. When she was diagnosed with epilepsy in March
2010, it marked a new chapter in life for all of us, including our family and friends. It was that week of her life and the months that followed that made us realize the importance of life. The fear of losing a child and sheer lack of control is undescribeable. She is one tough cookie. When I think back at all she has endured, it amazes me. I hope that through all this, even at her young age, she will have the attitude that she can accomplish anything.. I know WE can. Caedyn has helped us increase our faith in God immensely. I get choked up writing this because it is amazing at how our faith has changed in one year. We have been through ups and downs as a family but her disease has given us the ultimate challenge and still continues to do so today. A key verse in my life is found in Matthew 6:34, "Do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own." I pray everyday for decreased anxiety and have done really well at letting go and letting God. It has been surprisingly easy. The power of prayer and faith, two wonderful things!

Aside from being a tough cookie, she is stubborn as all get out. Caedyn hates it when I stand her up in the tub to wash her up, in fact, she screams and straightens out her arms and legs. She is a momma's girl and is still known to throw fits for her dad for many hours. Caedyn must get her attitude from her dad. I'm sure of it. :)
She loves loves loves her big brothers and I think the most favorite part of her day is waking them up in the morning. She climbs all over them and gives smootches till they are begging me to get her off of them. I love it. She is still not eating much "people" food and is not a big baby food eater either. Thankfully, nursing is still going well for us and she hasn't lost too much interest. I feel confident knowing she is getting the nutrition she needs from me. I often complain about the committment it is to nurse a child but it has been well worth every second and every inconvenience. We have a swallow study coming up in a couple weeks so we can get to the bottom of her food avoidance. Why she wouldn't want to eat ice cream, cookies and other yummy foods beats the heck out of me. I can't wait to see what we find out.

As you can tell, I could write for hours and hours about my daughter. I love her to pieces and cannot fathom a life without her, ups and downs and all. In her first year, I have learned patience, perserverance and the power of prayer. I only hope her next year brings that and so much more for all of us.

The birthday girl in her new tutu from Grandma Hoekwater

The delicious cake made by Grandma Hennip

100% Cuteness

Since I haven't posted in over two months, I am taking this opportunity while the boys are at Awana, Jeff is at Bible study and Caedyn and I are just hanging out to get caught up on my blogging. The posts are quite short and this one is no exception. I couldn't resist posting these pics of my princess in the tub status post hair pretty removal. I think most older men would be jealous of the hair this child possesses. Now, if it would only grow long!

First Day of School 2010

We have had a whirlwind summer and I can't believe school is finally here. Cam started second grade at Bauerwood Elementary and Case is in pre-school at Cottonwood Christian. Both boys have grown over an inch a piece and outgrown nearly all of their clothes. I am amazed every year at the rate they grow! And I wonder why we go through nearly four gallons of milk a week? Crazy. Both boys were excited to start school and back to their normal routine. Since my work schedule doesn't change much, the kids stayed on 8pm bedtimes and early rising all summer long so I am thankful that this transition was an easy one. It is definetely different getting THREE kids ready in the mornings now and without help. I like to say it is 3 against 1 and almost every morning the 3 win. I do have a pretty good routine going though; you almost have to to survive!

I am looking forward to Case's last year at Cottonwood (yeah for less expenses!) and Cam starting a more rigorous academic routine. He is learning Chicago math, and for those of you who haven't had the "pleasure" of this learning style..watch out. Be prepared to go back to school yourself and learn it. It is much different than the style we are used to in carrying the one and adding the zero when multiplying. FUN. I mean that with every ounce of sarcasm possible. I am thankful that Cam loves school and is very intelligent. I know, I know, every parent thinks their kid is sooo smart, but really, Cam never studies (lucky us) and gets 100% on all his spelling and vocab every week. He is a natural. I like to say Cam will be our brain and Case our braun. I am looking forward to seeing what the future and this school year will bring. I am sure God will provide and continue to bless our family. It is amazing what he has done for us thus far!

Power of Prayer

I know it has been a while since my last post so I want to give you all an update.

I cannot tell you the incredible amount of anxiety I expected to feel while we move ahead on the process of weaning Caedyn from her Valium. While I feel it a little and think I will as long as we battle this disease, I feel your prayers more than anything. Thank you. Caedyn has been doing SUPERB with this wean. I have seen our daughter BLOOM more in the last month than in the last six. She is heaven sent. Well, she was before, as are all my kids, but you know what I mean. She is interacting with everyone three fold, holding her head up well and reaching like crazy. I think crawling may be just around the corner. We are working diligently at learning to self-feed but she just prefers to have mommy do it. Although she only has two teeth (Cam and her both have two front teeth coming in at the same time, so cute) she is enjoying mac and cheese, pasta, cheese singles and even a bit of turkey lunchmeat. Her meds have been going so much better as well. She actually swallows her pills whole and the process now literally takes five minutes. Amazing. I never thought we would come this far. EVER. Another prayer answered!

She is doing so well. We are so pleased and are thankful for all your continued prayers. We feel them!
And, because I hate blogging without a picture, here's a quick pic of my youngest cutie patootie!

Splish Splash

We had the opportunity to go to Splash Universe in Shipshewana, IN a couple weeks ago. We had so much fun. It was the perfect time to see if my notion that Caedyn would be a water baby was right or not. She has always loved her baths and I figured I would have to drag her out of the pool. My hunch was right. The child loves the water. Almost craves it. After a fun-filled day in the pool, she slept through the night for the first time in weeks; okay, make that months. The boys had a blast on all the water slides, making crafts and even dancing with a few characters on the dance floor. Case enjoyed the dancing a whole lot more than Cam, but that is our Case. He is fearless. He doesn't mind crowds and embraces a good time. I hope that is not the case when he is a teenager! It was nice to get away for a night and try and forget our daily lives. Plus, with Jeff gone at least a couple nights a week, we embrace every ounce of family time when we can!