Wednesday, December 22, 2010

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!

Wednesday, December 8, 2010

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 next post will include pictures. I promise!

Wednesday, November 17, 2010

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.

Thursday, November 11, 2010

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.

Wednesday, November 10, 2010


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!

Saturday, November 6, 2010

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!

Saturday, October 9, 2010

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

Wednesday, September 22, 2010

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 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!

Sunday, July 11, 2010

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!

Friday, July 9, 2010

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!

Tuesday, June 22, 2010

Rain, Rain GO AWAY

I was given a blog address by a friend and co-worker of mine, Krista. I have been compelled to read it daily ever since. It is and it is an amazing, inspirational read. Tonight, as the kids were outside playing and Cae and I were sitting inside, I was reading it and became so emotionally overwhelmed. It was like God was speaking to me saying, "Trust Me, You will get through this". In brief, the blog is written by a then pregnant mom with a special needs baby growing inside of her. They were given the option to abort early on but knew that was not the route that God had intended for their little girl. The blog spoke of her journey and struggle with why God would allow this to happen and why he chose their family to be part of this little baby's short life. It is such a powerful read. Should you choose to read it, have a lot of tissue handy. I only hope and pray to have as much peace with Caedyn's diagnosis as this mom had for her baby. I can relate to her story of pleading with God to heal her daughter and allow her to live a healthy life, I understand her frustration with God's plan and how it doesn't always go the way WE hope it will and finally,I, like her, believe that hard situations can only make us stronger. Here is a tiny excerpt:

In the middle of the night, I heard the voice of God.

It was one of the very few times that I felt like He was audibly speaking to me. I sat up straight in my bed.

Thoughts rushed through my mind like a slideshow at a speed I could not control. I was reminded of the pilot's voice, the thermometer that read in celsius, the storm clouds, the political wars...all of it, like a movie, and then just a few words.

"It takes a lot of rain to make grass this green."

I started crying like a child. In a foreign country, in the middle of the night, in the midst of facing my greatest fears, God taught me a lesson about life that has (I promised to tell you!) inspired the name of this blog.

In the span of a few minutes, I committed to God that I would stop praying for sunshine and start welcoming whatever made the soil rich.

And so, a year later, here I sit. Many of you have asked how I am so strong. The answer is that I am not strong, but my God is, and He is in battle for me. My end of the deal is held up by praising the One who has chosen me to walk this. And I do.

As for my little Prophetess, Abby? Her words drifted back to me as I cried that night, and they bring tears to me now.

He will show you a rainbow.

It occurred to me that He had chosen this metaphor before, long ago, with a man named Noah, and He has, for generations, made good on that promise.

As I recall, Noah wasn't afraid of a little rain either...

Please praise Him with me in this moment. Praise Him for being the same God who inspired Noah to hope and to build. Praise Him for loving us enough to grow a garden with our lives, no matter how much it hurts.

Even though we had a minor seizure set-back last week, we have had a good week. We are in the process of the dreaded medicine wean and doing well so far. I need your prayers as my anxiety is through the roof. I am reminded numerous times throughout the day that I am not the one in control of what transpires with Caedyn's diagnosis. God is in control and He has a plan for all of us, even if it does include a little rain.

Tuesday, June 15, 2010

Crash and Burn

Every new venture can come with its set of obstacles. The art of learning to ride a bike came easy to Case. However, it hasn't come without a handful of tears and owies. Case had his first run in with the pavement last night and the pavement won. Thankfully, there were no lost teeth and only a broken ego.

A Lesson in Bike Riding

It is hard to believe Case is old enough to ride a bike without training wheels. He has been begging Jeff to take the training wheels off his bike for nearly two months now. This past Saturday, Jeff finally took them off. Jeff turned his back for one second and Case was riding down the street. All by himself! I caught a few pics of his big day - minus the training from dad. Of course, Jeff sure isn't complaining!

Sunday, June 13, 2010

Sneak Peek - Hennip Family Photos

Here is a shot from our family photo shoot. For some reason I couldn't download more than one photo. Check out for more great pics of our family!

Tuesday, June 8, 2010

Hurdles, Hurdles

I start this entry believing we are so blessed. Even in the most trying of times I know that God is good and there is a plan in store for each one of us. It is convincing my head at times that bad things can happen to good people for reasons unknown and we just have to be faithful.
God has been really testing my patience and faith the past few days. Caedyn started being more fussy than normal on Saturday. Of course, Jeff left for California on Friday for a week so it is just my luck my weekend starts so great. Sunday, she was way more irritable than her normal happy, content self. I was attributing her fussiness to teething and didn't think a lot of it. Monday morning she continued to be irritable. Irritable to the point I couldn't console her with anything, wasn't able to get ready in the morning for work and it became quite frustrating! I just couldn't bring myself to send her to daycare so I stayed home with her. I am so glad that I did. All day she was very lethargic and it took a lot of effort to rouse her. I made an appointment with the pediatrician in the afternoon to rule out an ear infection.
At the Dr her temperature was 105 degrees. I would not have believed it if I hadn't seen it with my own eyes. I was feeling like Mother of the Year, let me tell you. She was not the least bit warm so I didn't even think to check her temp. It wasn't until a while later I figured out why her skin wasn't warm and she wasn't sweating with her fever. One of her AEDs (Anti Epileptic Drugs) causes her body not to sweat or react when it gets overheated. Therefore, she felt perfectly normal and she wasn't "feverish". Dr. Schipper wanted to send her to ER right away because of the high temp and her lethargy. So off to ER we went. I swear this stuff always happens when my husband is out of town! Thankfully, I have a great mom who came and stayed with me as well as my wonderful neighbor and friend, Angie.
After doing a series of tests including a chest xray, it was concluded Cae has right lower lobe pneumonia. Unfortunately, this quite possibly could be from her aspirating her medications when we give them to her. What are we to do? We are stuck between a rock and a hard place. Either we force her to take her meds or she suffers from seizures. We can't win.
Anyway, there is a good side to this hurdle. She had a 105 temp and NEVER ONCE had a seizure. This is a miracle as even healthy kids without epilepsy would have likely had a seizure with a temp so high. So I start this post off saying and believing we are blessed. We are. Beyond Measure. While we struggle with the best way to get her to take her meds and experience a minor illness setback, I am reminded that she is here and part of our lives. I am also reminded that we have wonderful friends (Lana, you have blessed me beyond measure) and God is in control - Now, we just have to Let Go and Let Him. Thanks for your prayers, as always.

Wednesday, June 2, 2010

Neurologist update

We visited Lori, the PA at the neurologist's office today. She is so nice and Caedyn seems to like her as well! Lori was really pleased with Caedyn's progress. It is a real positive thing that she has been seizure free for over two months. While I am still anxious about weaning her Valium, Lori reassured us that it is way more likely the Topamax is keeping her seizure free rather than the Valium. I asked the question I am sure every parent of a child with epilepsy asks, "will she outgrow this?". Of course, she couldn't give me a definite answer. She said the next few months and the wean off of her Valium is crucial. If she can remain seizure free during the wean and also during bouts of sickness, fever, heat, etc. these are very positive milestones. A child well controlled during these times and with as minimal meds as possible, makes it more likely she will outgrow this! Typically, before all meds are weaned, she needs to be seizure free for two years. WOW. Hard to think about two years from now. The goal is to get rid of the Valium, then the Keppra and maintain her on Topamax. We are positive that with the power of prayer and our faithfulness, she will remain seizure free. Thanks again for your continued thoughts and prayers. We know that there are so many of you keeping her on your church prayer chains and in your daily prayers. There is nothing more comforting than this. We will keep you updated again soon!

Tuesday, June 1, 2010

Caedyn 8 months

Time goes so fast when you have a little one. They grow right before your eyes and before you know it they are in school,learning to read, write and do math problems better than adults. I am not looking forward to those days for any of our children, especially not my little princess. She has grown so much in the last few weeks. She is finally sitting on her own with very little help, doing better with solid foods and talking up a storm. While "dada" and "gaga" tend to be her words of choice, I have hope that "mama" will not be far behind. I have no doubt I am still her best girl. She and I have this crazy bond I cannot describe in words! We have also been seizure free for 2 months and meet with the neurologist tomorrow. We will give you a report as soon as possible. Thank you for your continued thoughts and prayers. We appreciate each one so much!

JPS 1st grade Field Trip

As a working mom, I strive to make it a priority to attend each one of the kids school functions, including daily field trips. Last year, Cam and I went with his class to the farm, this year, Frederik Meijer Gardens. We had a blast. Last year, I had the priviledge of riding the bus with fifty kids to our destination. Now, for those of you parents that have had the pleasure of riding the bus before, you know I am being very sarcastic when I say pleasure. Riding the bus is no fun. Call me spoiled, but I am too old and yes, too spoiled to ride in vehicle with no air and screaming kids. I did my time for 10 plus years when I was in elementary school! So, this time, I drove with two other moms, one of who graduated with Jeff. Small world.
Once the kids were off the buses and settled, we divided into groups. Kathy Shavinksi and I were paired with Cam, Jordan, Logan and Jack. Each child was given a to-do packet about 10 pages long of places to visit and learn about. Who would have thought we would be doing school work on an end of the year field trip? Nonetheless, it was fun and entertaining.

We took time to read a story and make bracelets in between our adventures. There was a lot to see and do. We visited the Log Cabin, The Treehouse, The Children's Garden, The glass artwork (amazing!) and even stopped to see the turtles. We got a little nervous when visiting the waterfall as the boys decided it would be fun to try and sit and walk along the rocks on shore. There was one time I think that there was about 8 boys all messing around the same spot and you could hear all the moms gasp in horror as we thought FOR SURE one would fall in.

It was a beautiful day, mid 70's and sunny. We couldn't have asked for better weather or better company. I am reminded at times like these how important it is to be a mom and even more importantly, an involved one. I am blessed to have a flexible job that allows me time away to participate in such fun events. I know Cam and I had a wonderful time, just the two of us!

Tuesday, May 18, 2010

PT evaluation

Caedyn had her first physical therapy session today. It went quite well considering she was ready for her morning nap. Our PT, Julie, is super sweet. She took a full prenatal history and discussed our current concerns. Caedyn passed with flying colors in the reflex and stationary areas. Her reflexes are consistant with that of a seven month old and her stationary/positioning consistant with her age of eight months. There is quite a bit of delay with the locomotion area. Which means while she can roll over, she doesn't really show any signs of interest in doing it, much less one bit of interest in crawling. Julie put her at the developmental age of about four months in that category. Now, being in the medical field and having previous experience in pediatrics, I am taking this with a grain of salt. I know children develop at all different ages and that the developmental milestones are just that; milestones the majority of children meet at any given age. It is hard to remember however, when I read the boy's baby books and see that they were starting to crawl and say words like, "momma and dadda" at eight months. I am certain that Caedyn will catch up and look at this delay as getting to keep my "baby" a baby just a little bit longer than most!

Wednesday, May 12, 2010


Oh my goodness, I am smitten with this daughter of mine. Maybe because I know she is my last baby and her growing up just makes me so sad! Or, it quite possibly could be just because she is so darn cute! I could sit, watch and talk to her all day. Do they really have to grow up?