Machine Pitch - Cam 2011

This is Cam's 4th year of baseball with Georgetown Little League. This year he played as a Royal. He enjoys the machine pitch division and so do we. It is more competitive and an actual score is kept unlike with tee-ball. Next year, the real fun begins with kid-pitch. I can't believe how fast Cam is growing up.

Cam has had the same coach for the past couple years, our neighbor, Mark Kopczynski. His son and Cam's best friend, Nate, have been teammates each year. Cam says his favorite part of this year is batting and being the pitcher. He is pretty good at both, probably why he loves them so much! We are so proud of him. He made a huge committment and aside from one church obligation, made every single game. We are looking forward to fall Little League with Hudsonville!

First war wound of the season, on the first night. Cam took a ball to the mouth. We are thankful only a bruised ego and no lost teeth!

Our Littlest Slugger - Case 2011

I am terribly behind in my blogging. As you can see, it took nearly two months to get my last post finally up with pictures. Time is flying by way too fast! Can't I just put our kids in a bubble and stop time? I wish.

Case finally got his turn at sports this spring when we signed him up for Tee ball with GLL. We found out that he is a natural. He loves to play any position and excels at first base. In one game, he got three out of five players out on their first hit. It was a lot of fun to watch all season long.
He had two coaches this year, Coach Derek (you may know him from the WZZM 13 Morning News) and Coach Holly. They were great. Actually, I will be honest. I was more than annoyed with the stringent practices (like 5 more than I would have expected for a first year tee-ball team) and the need to be 30 minutes early for games (really?). However, they did have one of the best tee-ball teams in the league so I guess their hard work and effort paid off, even if it is only little league!
All in all, Case had such a great season. He listened well, played well and showed good sportsmanship. Jeff and I couldn't be more proud.

Case and Coach Derek

I was adament to take a picture in front of our blossoming tree that lasts like 3 days. This picture just cracks me up! Cute!

Easter 2011

This Easter, as we do every Easter, we went to my mom's for a great meal and her traditional Easter egg hunt after church. Every year we say she goes above and beyond in regards to candy, treats and Easter eggs. This year was no exception. Each child had their own color and 25 eggs to find. Not the little eggs, the BIG ones. Yes, we will be eating Easter egg candy for months!


Pictured (L-R): My niece Olivia, My mom, Caedyn, Cam, My nephew Eli, My niece Addy, Case, My nephew Zach and Dale



Aside from all the Easter bunnies and eggs, we still remember the true meaning of the Easter season. I was so happy that the kids got up Easter morning and first thing they said was, "Mom, Jesus rose to Heaven today after dying on the cross!". It is so great knowing that our children have and know a Savior that lives and died for them. It makes a parent feel good knowing that so far, we have done a good job and their lives are in His hands.

Finally, with Easter comes new Easter outfits. I am so blessed to have a mother that is so talented. This Easter, she made Caedyn her Easter dress. It was beautiful.The pictures do it no justice. It will forever be my favorite piece of clothing. It is so detailed and the layers on the dress are adorable. The boys, well, I always enjoyed dressing them in pink button down shirts and khakis with spikey hair...now that I have a little girl to dress, Easter is much more FUN!

Cae loved the new Zhu-Zhu pet in her Easter basket. Can't tell, can you?

Leg Braces for what?

It has been FOREVER since my last post. I started working on Case's birthday post the first week of April but have been so busy, haven't had time to keep it up! I wanted to give you an update on where we are with Caedyn and all her therapies and milestones. We are so happy with how far our little miracle has come! However, forgive the rant I may start on.....

Caedyn started PT at Mary Free Bed back in January. It was recommended by her therapist, Lura, that she get braces to help with walking. We had her fitted the second week in February. While we waited for them to be custom made, we continued on with therapy every Wednesday religiously. We have seen a vast improvement in her locomotion skills! She has learned how to crawl up and down stairs (the down part is still a little scary for me as she prefers to go head first using her hands rather than turning around), can crawl as fast as any runner and learned to walk, though unstable, on her own the first part of March.

We went to pick up her AFO's (Ankle/Foot Orthotics) April 6 from MFB. They are adorable. I guess they better be for $1600 a pair. We are thankful that our insurance pays for 50% so we have an out of pocket cost of $800. Yes, I said $800. Sigh. Lance, our "fitter" if you will, showed me how they worked and answered any questions I had. He said she would need a size bigger shoe for them to fit and as luck would have it, I just got her size six Nikes for the summer. Excellent, right? No. I got them home, excited to put them on Caedyn so she would be a stable walker by summer. Not so much. I couldn't even get them on Caedyn halfway. I was so discouraged. When Jeff got home, we dropped the boys off at AWANA and headed to the store for shoes. We visited shoe stores all over for two hours finally ending at Stride Rite. Stride Rite has extra wide shoes and is used to fitting for orthotics. A size seven extra wide wasn't going on my child. Talk about frustrated, anger and discouragement! I was more furious that we would likely have to shell out ANOTHER $100 for custom made shoes she would outgrow in three months to go with the $800 orthotics I was told she had to have to walk. While, in our two month wait, she was walking on her own anyway.

I called MFB, explained my frustration and very politely asked that they figure this mess out. Not only did she really not "need" the braces for walking, but they didn't fit and I wasn't about to go to their custom shoe department to spend more money. We met with Lance and he was very nice and empathetic. He told us he couldn't get the shoes on her either, which is rare, and that he would talk to Lura and his boss to see if the orthotics were still warranted and what are next step wer and get back to me within a week. That was over two weeks ago. When I called, apparently, they are waiting on the therapist for a decision. Pretty sure someone forgot about us. Maybe they forgot about our $800 as well? Doubt it.

My Baby Boy is F.I.V.E.!

Oh my goodness. Where has the time gone? It is the age old question every mother asks as her children get another year older. Not only do we grow older (and get more wrinkles) but this just means our precious babies that we once wondered would ever grow out of "that stage", finally are. Boo.
Case has always been difficult, er, strong willed. We knew he was trouble from his frequent, multiple hour screaming fits at only a few weeks of age. While the temper tantrums and frequent events that would make any parent lose their mind were a daily occurance, I wouldn't change a single thing about my Case. He is a sports fanatic, independent, extraordinary loving (he is such a momma's boy, I love it)sassy and knows what he wants but doesn't always get it. Oh, wait the dimples. TO DIE FOR. I love them. Thank you Hennip genes, thank you.
For some reason the 1st and 5th birthdays are important ones in the Hennip family. We always do extra fun things for these birthdays like have a party with more than just family. For Case's special day, he wanted to have some buddies over for pizza and cake and then spend a couple hours at For The Kidz Gym in Wyoming, MI. Case invited his cousin Zach, Torin, Luke, Alec and Anderson. They had so much fun jumping on the trampolines, in the foam pit and balancing on the balance beams. It is a really cool place.
It's hard to believe my little bugaboo is 5 and going to full time Kindergarten in the fall. Here is to a wonderful 5th year, Case!

From Left: Torin, Zach, Alec, Luke, Anderson, Cam and Case

We are having a GREAT time!

Dimples. Need I say more?

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!

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.