Monday, January 24, 2011

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!

Saturday, January 22, 2011

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!

Wednesday, January 19, 2011

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!