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!