Well I have found something new and fun to do lately. Four wheel riding! I don't know why for sure. Is it the feel of the wind racing around me or the idea that I get to spend more time with my husband? All I know is that it is the first thing I have done in the last few years that has truly felt like a break from all my responsibilities... Freedom from therapy, catheterizing, stress of illness, especially UTI's... I don't know. So many different things that seem to bundle up into one big stresser! I haven't blogged for way too long! I'm sorry to the people that have been trying to follow Ellie's story. I guess life has just been too busy. I feel like I've been on a roller coaster ride full of twists and turns, stop and go, and ups and downs.
Ellie is close to being 2 and a half years old now. She has large equipment in our front room that she uses for therapy each day. She received her first pediatric wheelchair just before she turned two. Her first chair was a homemade bumbo trailer with small bike wheels at 18 months. Ellie had that bumbo wheelchair figured out within a month from when she very first got it. So she was very ready for her pediatric chair because of that. It's been one of her biggest blessings in life. And at the same time there are many times that I think "wow" this is why 2 year olds don't have wheelchairs normally!". She goes all over and is not scared to try anything. I can't count how many times I have had to stop her from trying to go down the stairs in it. We've also learned that grass and her wheelchair do not mix. Her first and only tumble was in the grass. Luckily it scared her, but didn't hurt her.
This year has also been a huge milestone for Ellie when she is out of her chair. Ellie is now scooting all over the house. Its great to see her figure out how to get around No matter how strange it looks! Ellie has terrible eyesight too so after getting her fitted for those, she has tried to scoot farther to the objects that she can now see from a distance.
Since the last blog, Ellie has had incredible improvement with her hearing. After a few surgeries, tubes in the ears, and many miracles, Ellie hears above normal now. Because of the amount of time she couldn't hear and her premature birth, she is still working on talking and saying words clearly. She has about 70 words that she says regularly now and she is working really hard on two to three word sentences. In November 2011 Ellie had some pretty serious throat surgery. We discovered her 4+ tonsils (worst tonsils you could ever have) and enlarged adenoids. Also with that was tons of fluid in her ears as well. And the surprise was a Laryngil Cleft on her vocal chords. So after a total throat reconstruction and another tongue clipping, Ellie has had very vigorous oral therapy to help build up her mouth and tongue muscles. One of her biggest problems right now is that she can't lift her tongue to the top lip. She can finally stick her tongue out, but not up because her muscles just aren't strong enough. If we don't fix this she will not be able to talk properly or eat certain foods as she grows so this is a top priority.
As far as Ellie's lower extremities, she kicks more but still not enough for those quad muscles to develop in order for her to walk. Her hips are the worst they can be, but this is a possibility with her condition. So we weren't too surprised about them going out again. The other thing we learned in the last year or so is that she has some malformations with her brain too. These malformations could affect her in the future so we have more info on things to watch for that can be affected by it.
All in all, it's a busy life. Trying to keep up with a special needs child and a normal school age child has its obstacles but I still feel so blessed! I've learned a lot and I am finally hitting the new normal mark after having Ellie. Other Spina Bifida moms told me that I needed to give it two years before I could feel somewhat settled and they were right. Life is good! Yes, still busy and stressful but good! I have realized that there are many challenges ahead for our little family. More medical issues are coming and continuing, but I know I can handle it. God is on my side and in my heart. I can get through anything as long as I remember that.
It's funny... Earlier as I rode up over the hill from my parents home, a flood of memories from my childhood came over me. I ran and hiked those hills only 15 years ago. I never thought my life 15 years later would have turned out like this! But at the same time, I would trade it for nothing! Oh! How I have grown since the last time I went into those hills. It was great to know and feel a sense of accomplishment for what I've done with my adult life so far. A lot of my dreams came true and by dreams, I mean the important ones! The ones that count eternally!
