Overwhelmed

Overwhelmed indeed. That is the only way to describe how I feel about the unbelievable generosity of our family and friends.

We are participating in the 4th Annual Race for Pace, benefiting Pacekids Programs. As you know, Taylor is a student of Pacekids. Diagnosed with intractable epilepsy, cortical visual impairment, and severe global developmental delay, we so very much rely on Pacekids to help our beautiful girl reach her potential. When I sent out our initial request for pledges, I had set a pretty steep personal goal of raising $2,000 for Pace. When our pledges surpassed that, I set a new goal of $3,000. Yet again, you have amazed me. Our current goal of $4,000 is nearly met. We have raised $3,750 so far towards the Pacekids programs that help our beautiful Taylor, and so many other very special children like her. The big event is a week away, on Saturday, July 2nd. There is still time to contribute if you would like to be part of this growing gift, please click here, and we thank you from the bottom of our hearts.

Your generosity has really taken my breath away, we are beyond grateful. Because we get to see the results of all the money raised for Pace. We get to see those results through our daughter. We get to see her make little gains and move towards reaching her potential. We cannot even begin to describe how very much we appreciate your generosity, your thoughts, your prayers, and your encouragement.

Thank you so very, very much for being such a special part of our journey with Taylor.

Creepster

I was telling Marissa last week about a park in the community next to us that has a swing for Taylor and a swing for her. I should know better not to say such a thing unless a trip to see it for herself is imminent. For one reason or another we didn't get there until yesterday. It always bothers me that a trip to the park is always for Marissa and there's never anything for Taylor. But this park, just around the corner in Cranston, has a swing for special needs children. Thank you Chantel for telling me about it, we finally made it!

To say Marissa was thrilled to be able to give her sister a push and then swing right beside her is an understatement. It will be forever known by Marissa as the-park-that-has-a-swing-for-taylor-and-a-swing-for-me. I love it. What a joy to see both my girls swinging side by side at the park!

While Taylor enjoyed her very own swing, Marissa enjoyed her usual park fun...

We got to try out something new today with Taylor. We got a "Creepster" on loan from Pace. One of the kids from Pace has a very handy grandfather who made a couple of them for Pace. It may be a knock-off but you'd be hard-pressed to tell it apart from the real deal.

The Creepster Crawler assists children with crawling when this activity cannot be achieved independently. Instead of a caregiver (or two) trying to support the child’s arms, legs, head and trunk, the Creepster Crawler does this with a seven-point harness. This frees the caregiver to encourage the child to crawl. Crawling is an important step in development. When a child is on his/her hands and knees, the arm and leg joints, muscles and connective tissues receive feedback (proprioceptive feedback) to let the brain know where the body is in space which helps stabilize the joints. Crawling also helps to build muscles in the arms, legs and trunk. It is also the precursor to walking since you move your arms and legs with the same pattern as you do for walking.

The Creepster Crawler is used on a smooth surface at home, inside or outside, to promote independence, work on muscle strengthening and training. It’s also a great therapy tool as well. The Creepster Crawler can support the child on his/her hands and knees while the therapist/caregiver works on encouraging the child to reach for objects, weight-shifting and increasing head control.

When Shar arrived today for her session with Taylor and showed me the contraption, I thought to myself there's no way Taylor's going to be happy in that. She hasn't been happy doing anything on her tummy since the g-tube went in. But Supergirl proved me wrong once again, I love it when she does that! There was a teeny tiny bit of resistance from her as we got her strapped in, but once she felt secure, she didn't seem to mind it too much at all! She put a little bit of weight through her arms from time to time, and through her legs too. No pushing forward with them though, that will indeed take time. The main thing I think it's going to do for her is help her head control, it's very hard work to keep her head up while she's in the Creepster. She did a great job of keeping it up today, but she did take breaks and rested her head on the floor until she had enough energy back to lift it up again. What a girl!

Marissa slept over at Granny's last night after Sunday dinner, so I enjoyed a nice quiet house just me and Taylor all afternoon. When Mom brought Marissa back, she had her craft-of-the-day in tow. The cutest little wooden spoon puppets ever! Does the dollar store realize just how much happiness they offer?!!!!

Happy Monday everyone!

I Want a Pony!

What's that Taylor, you want a pony? We will get you a pony! A Snug Seat PONY Gait Trainer, that is :-)

We were at the hospital yesterday with our therapy team trying out walkers for Taylor. They brought in two different ones, the Pony and the Pacer. The initial goals for Taylor in a walker is to work on her head control and weight bearing through her legs. Once those are well established, the next goal will be to begin teaching her steps. We're a long way from that, but it's still pretty exciting to try something new and get our girl progressing!

We decided on the Pony over the Pacer for a few reasons. It's smaller, so it takes up less space, and maneuvering around the house will be easier. There's more room for her to grow with it. Our OT and PT were happy with her positioning in it, and she was able to hold on nicely to the handlebar. That was a surprise, because she typically will not hold onto anything that thick.

The Snug Seat Pony Gait Trainer supports a child in a vertical and upright standing position to begin walking movements even though the child is unable to put full weight on her legs or balance while standing. This gait trainer is designed for children with severe neuromuscular or developmental disabilities which would require the child to be completely supported in the upright position. The child can make reciprocal movements but does not have to be able to shift weight or have balance control. The Pony Gait Trainer enables children to experience new freedom of movement as they strengthen their physical development.

Our little kicker has some very strong legs on her and I'm super anxious to see what they can accomplish! Go Taylor go!