Those sweet words

This is a blog that I’ve been avoiding for long enough, it’s time to face the music……or lack there of. It saddens me to tell you that Livia’s speech is pretty much gone. She has lost so many sweet words that I long so badly to hear. Occasionally, she will mutter a random word. I desperately try to pull words out. Sometimes I’m successful, most of the time I’m not. It hurts my heart so very much that she is struggling to communicate. I can still see that she processes what I’m saying and can still do most of what I ask. It’s a hard reality to face that MPS is in my child and starting to take over. I want to stop this for her. The changes that occur with MPS children are gradual, so when things start to change we can adjust and modify life as needed. I guess this is a blessing. We are also seeing changes in her mobility. Her walking and running are a bit labored. Her limbs are “free spirits” and seem to have a mind of their own at times. She does a lot of toe walking, turning in her feet, walking on the sides of her feet, keeps her knees locked (not bending) when she’s fatigued, hesitant with stairs, tires quickly. However, it’s not stopping her. She still moves, plays and enjoys running. At our last geneticist appointment I expressed my concerns with her mobility. They suggested that she receive more PT than what she is getting at school. I took her this past Monday to a business here in Roscoe for a PT evaluation. The therapist was extremely patient, thorough and willing to work with Liv. This of course was a HUGE blessing and an ease to my mind. I never know how people are going to react to Livia. I think her loving and easy going self helps a lot. And she’s really cute! 🙂 Anyway, the therapist was very honest and told me that she had never dealt with Sanfilippo Syndrome. Not a big surprise. She complemented me on how educated I was about Livia and said that it would help her along the way. She was a little “baffled” with a few things with Livia. Her feet in particular. She recommends a qua therapy for her which makes me extremely happy. One of Livia’s most favorite things to do in the world is to be in the water. This type of therapy is also “containing” which is very beneficial. So, we are sort of on a new path of maintenance with Livia. Her mobility is extremely important to me and I want to keep her comfortable. Which brings me to my next topic. Since she has been fatiguing quickly when we are out and about….which we are a lot, I’ve been toying with the idea of getting her a new stroller since Christmas. I started researching this, and it was pretty hard for me. You see, at this point, they are no longer called strollers….they are wheelchair’s. Or, if they call them stroller’s, they always include the word wheelchair along with it. Livia, in no means needs a wheelchair. Wheelchair’s are for people who can’t walk at all. Or at least that’s how I use to think. During my research, I quickly discovered how pricey these new chairs run. WOW! I’m use to umbrella strollers that are under $30.00. I was now facing $1000’s of dollars. It was very disheartening. I tried the insurance route, which I knew in the back of my mind was going to be exhausting. I’ve never had luck when I’ve tried that route. My next idea, let’s see if there is a grant out there that I can apply for to help with the purchase of the stroller. I starting looking the third week in February. I came across Helping from Heaven . This foundation is located in Vernon Hills, Il……not far from us at all. Please take a moment to read about this amazing family, and Lexi……who is helping from heaven! Grants were due by March 1st, this was only days away. I decided to go for it. A couple weeks ago I got a lovely phone call from Kristy Kazian, Lexi’s mother. She was so kind and wanted to inform me that our grant was chosen for the stroller. WOW! I can’t even express what a relief and blessing this was to us. Keeping Livia comfortable and safe is so important to me. Now going out in public, staying active and involved is going to be a little easier with this new piece of equipment. We should get the stroller next week.

I tried to add this song to my blog, but it wasn’t available. Please take a moment to listen to the words and cherish those sweet words that you are able to hear everyday from your kids, spouses, friends and family. Appreciate your abilities and try to focus on the blessings that occur every single day. Love and hugs~ Kelly