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!

Feeding Therapy Week One

Well, we made it through the first week of feeding therapy at Mary Free Bed. Only 11 weeks to go! I am excited about the progress Caedyn will make over these next three months. We have a wonderful therapist, Linda. She is patient, kind and demands results. Everything a therapist should be!!! We meet bi-weekly on Monday mornings and Wednesday afternoons. MFB is not flexible at all with my scheduling requests, this will have to do for now. Hopefully, a Friday time slot will open up to occasionally allow Jeff to observe and participate in her therapy hour.

We began Monday with some food play and observations. Caedyn sits in a highchair and is given some yogurt, which thankfully, she enjoys. She is encouraged to play in it with her hands, toys and our newest therapy tool, a Nuk brush. This will help her to not be scared of food, which she so often is, and hopefully teach her to enjoy it like most toddlers her age. The textures of toys vary and Linda places each one in the yogurt and into her mouth. This in time will also strengthen the weak muscles she currently isn't using to chew. It also gives Linda feedback watching her swallow and move her tongue around. It is quite amazing what evaluations are being made throughout the hour. So many things we take for granted as part of our digestion, Caedyn has a hard time with. It has been determined all of this is in relation to her low muscle tone, which we are no stranger to hearing.

"Sure Linda, anything you say.."

Today, Linda taught me a couple daily exercises that are quite hard for Caedyn and will take some time for this mommy to learn. Linda is encouraging yet firm in her teaching skills and assures me that I will probably do the techniques wrong for the first few weeks! However, with time and practice, I am sure both Caedyn and I will master them. With Jeff being out of town most of the week, the majority of this responsibility will fall on me and of course, all the grandmas who care for her each day. I am grateful that each one is so willing to be part of her learning experience.

Linda also suggested getting Caedyn involved in more physical therapy once a week at MFB. Currently, she only gets PT/OT every 3-4 weeks with Early On. Because she doesn't have the diagnosis of CP on paper till her full evaluation for the condition in February 2011, the state will not allow any more PT than monthly. It is quite unfortunate, but I am thankful to have health insurance that hopefully will pick up the cost until we can get the assistance we need.

Througout this process we also meet with a nurse once a month for height and weight measurement. Today Caedyn was 25# 3.7 oz and 32.25 inches long. That puts her at about the 75% percentile. I cannot tell you how happy this makes me! She has gained about a pound in the last month since her well child check, so I am confident she is getting the nutrition she needs from me as well as the little amount of food she eats regularly. The end goal is to wean her off the bottle/breast and onto a cup and getting her to eat any and everything in terms of table food.While this is bittersweet for me, I look forward to having the flexibility to come and go without hauling around my favorite black bag. I will however, have a hard time with letting go of the remarkable bound we share through nursing. :(

We have no change in diet as of yet (I am so thankful for this) except to make sure that all her food is pureed and in very small pieces. We eventually will end up thickening her liquids with something they call Honey Nectar but I don't forsee this being a real big deal. For now, I am so very thankful that she is able to swallow and eating at all!

I will try to keep up with blogging her therapy sessions as she progresses. For now, please continue to pray that we remain seizure free to avoid any set backs, that therapy will ease into our already hectic life routine and that Caedyn contines to blossom into the toddler I know she can become. Oh, pray for patience for me as well. While this too shall pass, it is hard to keep your cool when you never get a chance to just sit back and relax! As always, thank you for your continued prayers, support and kind words of encouragement. It means so much!

Giving Linda the whine we know so well.

Working on bringing food to her mouth with her Nuk brush, all while making a fun mess!

Caedyn is encouraged to play in food with her toys. The different textures are great for encouraging sensory/motor growth of the mouth.

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!