Disney, chairs and seizures...oh my!

It's been over two weeks since my last post and so much has happened it's hard to know where to begin.

Let's see, Logan finally received his wheelchair and his bath chair, we've been to Disney, Freddie started swim lessons again and finished his school year, and Logan has been pretty miserable during all of it.

We continue to have so many blessings along the way, but they are sometimes overshadowed by Logan's crying and suffering. If we could just find a way to get past this and let him live his sweet little life. The frustration and anger are really starting to set in.  Not all the time, but when he cries and has seizures all day it's hard not to wonder what we are doing and why we can't seem to find anyone to help him.  Or to even care that he has all of this going on!  And it's not that we don't have people who care.  We have more than our share of prayers and support, it just seems like we can't find anyone to "fix" what is going on with Logan.  And that's what Mommas are supposed to do, right?  We fix things for our family....and when we can't fix something we feel frustrated and a sense of failure.

Over the last couple of months his seizures have gotten worse. We've struggled with constipation since the medicine he was on that he had such a reaction to, but with some additional fiber in his diet and the occasional dose of Miralax, I think we have worked through this one issue.

He also has a hard time eating because of the sore on his tongue that cannot heal. Because he is still taking the majority of his nutrition by sippy cup, it never really has a chance to heal so every time he eats he essentially re-injures it. He screams, it bleeds and we switch to giving him his Pediasure by syringe. But we found out the hard way that the syringe doesn't get enough in him before he quits eating and we were approaching dehydration, which only adds to the constipation problem.

And then there is the twitching. It is so bad sometimes and we can't seem to stop it...he cries and cries. At night sometimes he cries and frets for 2-3 hours before he can ever fall asleep.  I think I've used and overused the word brutal, but it's so fitting. No one, especially a child, should have to live this way in a world where we can put people on the moon, fly enormous machinery through the air for hours and hours and people who simply entertain us make more money than they will ever spend. 

Why have we not found a better way for people to LIVE with Epilepsy????? 

Sure, we want a cure and will absolutely help in the fight to find one, but there is life to be lived during that fight.

Okay, so that's the news that has not been so positive lately, but there are wonderful things happening around here also.  I probably should have started with those...maybe I wouldn't get so fired up if I focus on the positive first.

Our business is doing well.  What a blessing to be successful in a family owned business at such a tough time economically for our country.  We truly are blessed by our clients and friends....and God who leads us through it all.  With success comes difficult decisions and it's own share of stress, but I could not be prouder of my sweet husband. He works so hard trying to balance it all and continue to provide for our family. He's amazing.

And speaking of blessings, I truly don't know where we would be without our family. Life would be all but impossible if we didn't receive all of the help and support from them. And no matter what we do, there will never be a way to do for them what they have done and continue to do for us. Thank goodness God is the one who chooses our family for us. He knows what we will need!

So, the rest of the story.  We took Freddie to Disney!!!  Fred had a conference there this past week, so we left on Saturday afternoon after a community yard sale and drove to visit family in Jacksonville. We should have probably stayed there!  Freddie had such a good time on their farm!  They have horses, cows, chickens, cats, a dog......but the best part, they have a huge trampoline, a pool and cars to play with!!!  It is so comforting to see him have such a good time playing...just playing like little ones are supposed to do.

We headed out on Sunday to Disney and spent Monday in the Magic Kingdom. Fred's meeting was Tuesday morning, so it was a very quick trip.  What we learned?  Freddie was soo good in the park, taking it all in, navigating the crowds and finding the characters....but he enjoyed the hotel pool most of all. They had a life jacket he could wear...and loved....and it was easily his favorite part of the trip. I think we may wait a few years before we head back!  Hopefully we will have Logan's seizures under control and it will be a family trip!  This time, he did much better staying home with Nana and Papa.

I also mentioned that we got Logan's wheelchair and bath chair....YAY!!!!  He loves his little wheelchair.  He seems so comfortable in it and can play with toys on his tray. He loves sitting up and being part of the action.  We are so, so very thankful for it!

We used the bath chair for the first time last night and discovered that it was a little more difficult than we expected. I think we just have to get used to it.  The straps rub his arms a little, he's pretty slippery and because he has pretty low tone it's not like he's laid back in a recliner!  We'll figure it out though.

Lastly, we had a speech therapy evaluation yesterday and will be adding that to his therapy lineup.  That means he has a therapy appointment five days a week.  Wow. It's a good thing though.  She will help us with feeding him and hopefully getting some more sounds out of him.  With everything else, it seems like if we could just get his seizures under control and life the fog of the medications, he would do unbelievably amazing things. It's coming....in God's time, not ours.

I also need to mention a dear friend of Fred's who is battling back after a horrible boating accident. He is the father of four beautiful, young daughters, husband, brother, son and friend and he suffered severe brain trauma two weeks ago. He is still in a coma, but is showing positive signs. Their CaringBridge site is http://www.caringbridge.org/visit/jasonbaldner.  Please keep them in your prayers as they have a long road ahead of them.  Fred and Jason skied together in Wisconsin and as I have mentioned before, the water skiing family is very tight knit....this has rocked all of the skiers and they are walking this road with him.

Below are some photos from the past few weeks.  Thank you all for your continued support!  I can't wait for these posts to be positive and for them to be full of all of the progress, smiles and laughter we are seeing from Logan.  It's coming....hopefully sooner rather than later.

Ms. Jean, our Early Interventionist

Fun with the hose!

Logan at the Fort Mill Strawberry Festival....he's having a ball!

One of Nana's favorite cars...minus the logos!

Logan's ambulatory EEG. How can he be so cute?

Freddie and me at the lake lot

Family picture at the Lancaster Rose Festival

Enjoying the outdoors!

Logan's first birthday party!

Freddie enjoying Logan's cake!

"I give it 2 thumbs up!"

We love, love Aunt Sheri!

Our sweet Nurse Jenny from 9LCH

A fun trip to the car show with Papa and Daddy...boys day out!

Fueling up at the car show

Logan's chair! Can you tell how thrilled he is about the adjusting process?

We do love it though!

Swaddled like a little bean...thanks Debbie!

Last bath in the sink...thank goodness!  It's overflowing!

And the building has begun!  WOW!

Freddie picking flowers for my hair on the lake lot. Sweet, sweet boy!

Another self portrait

Our wonderful family in Jacksonville!

Sweet hugs at the Boardwalk at Disney

Whoa....lots of people!

Dancing with Donald!

After an evening swim, our favorite.

Getting ready for our first bath in the bath chair

Not loving it so much

But our big brother came to help!

Will try to post more pics soon!!