Monday, October 4, 2010

lot of bad, little bit of good

Since my last post Emily has had some pretty bad days.
Her seizures just went nuts.  We made it through that rough patch with only one phone call to neurology, no hospital visits this time. We did get very close one night though.

I have had a very hard time ,emotionally, lately. I can handle having a child with disabilities, special needs, developmentally delayed-whatever you like to call it. I can not handle that fact that I have a child with very serious medical needs. It is hard knowing that her life if so fragile. Every attempt to stop or even slow seizures have failed and we all know that 100-200 seizures per day plus her 10+ clusters of spasms she still has daily is not good for her.
I have mentioned before besides our nurse who works 4 days/week we have no one that can help us take care of Emily. There is not one single person who can care for her if something, God forbid, happens to Joe or myself. I know that sounds morbid but that is something we have to think about. Don't get me wrong, we have a couple family members and some church members that have and continue to help us out financially and bring us delicious meals or bring over groceries. We are incredibly thankful for all of the assistance we get! We love getting cards in the mail or phone calls to check on us. Those things we truly appreciate!
Some days, especially bad seizure days, it is hard to deal with all of our daily responsibilities on top of everything with Emily. Dishes don't do themselves and the laundry just does not jump into the washer just because we are having a bad day. Life must go on.
So now that we are done with the bad stuff and complaining.... on to the good!

Emily has not had a seizure since Thursday at 2am. When she has seizure free days she does so much better with holding her head up and assisted setting.
She had her 15 month check up (it was actually 16 months though) and her head, height and weight at all way under normal but proportionate. The only thing we are watching right now is her hips. Emily legs tend to fall to the right when she is laying flat and she is going to be prone to dislocation so we have to try to keep her hips rotated to the left more.

Trying really hard to set up

Giving her PT the "get off off me" look.

Holding her head up so much better

Emily loves her sensory cat!! It has 3lbs of rice in it to help with her sensory issues.

Thank you Colin for the wonderful gift!!

She loves it!

Praying that this seizure-free streak will continue!!


  1. Praying right along with you.

    Love love love the sensory cat pictures. Collin loves his too!

  2. I know what you mean when you say there is no one to take care of Emily. Jeff and I feel the same way. We have siblings but I don't want to "burden" them with a special needs child when they both have 2 kids of their own. This is something we both need to think about but right now, we need to focus on our cuties and MAN OH MAN is Emily a cutie!! I love the little death stare she was giving her PT and her sensory cat... adorable!!

  3. I am in the same boat as far as who will care for Ella if something were to happen to me or her dad. It really is scary. I know that my family would step in and do what they could but they just aren't as "educated". And honestly I don't think they really understand what it is like to have a special needs child to care for everyday. Ella is almost 3 and her needs are that of a newborn plus her medical needs. It is very stressful for me since it all falls on my shoulders mostly. Everyone says "God has a plan for us" but I wish I knew what it was already so that I could plan for the future!! Emily is so beautiful and when Ella was her age she had mostly bad days too. It does get better so don't get down on yourself. You are doing your best with handling a very difficult situation. I am always praying for you guys.
    Kathy and Ella in FL

  4. I know that this is all so tough on you and Joe. Thank GOD Emily has tough parents who love her more than anything in the world! You two are SUCH a blessing to Emmy. Jeff and I are here if you EVER need us. Just let us know. I wish we lived closer by, I would be glad to come and help you with your household chores. I cant BELIEVE how Emmy's hair is growing so fast! She truly is a doll-baby. She is also sitting up more and holding her head up so much better. She is steadily making progress. Jeff and I love you all SO VERY MUCH! Always remember that, and call on us ANYTIME you need us!
    GOd Bless you all.
    Grandma Mary and Grandpa Jeff

  5. I am so sorry that your beautiful Emily has had such a rough time seizure-wise. I really do HATE seizures. :( I wondered if something was going on, you had FB'ed me and then never wrote more. I wish I lived near you, I would love to bring my Emily over and come entertain your Emily while you get things done!

  6. The pictures of Emily with her sensory cat are so cute!