I love Melissa’s new website compliments of Karen Arnold. She said Melissa was a big girl now and needed a big girl website. Thank you Karen!

I am hoping to get new pictures up soon of Melissa. She is really changing and getting the big kid look to her. She even got to be a flower girl in her big sister’s wedding. She rode down the aisle in her chair and was pushed by the ring bearer, her big brother, Josiah who was very honored to push her.

We had her at the doctors the other day and she weighs 22lbs 14ozs and is 35 ½ in long. The funny thing is that I was talking with a friend who has carried Melissa many times and we both agreed that she feels like she weighs about 30+ lbs. I told my friend that she probably only weighs 22lbs since she always feels way heavier then she really is. My neighbor guessed Melissa at 37 lbs while holding her. There are days that Melissa feels like a lightweight and other days you go to pick her up and she feel like she has lead in her butt. We use the CP growth chart and at least she is on the chart unlike the “normal” chart. I know her weight is a little of a concern to the doctor but I’m not concerned at all anymore. Melissa has muscle on her, she has a healthy glow about her, she is very healthy, alert, and eats like a horse. I say all those things mean that she is getting what she needs. Even though she is not on track developmentally she is always in a constant state of chance and improvement. Besides the doctors basically told me that because she wasn’t developing before the infantile spasms she would most likely be mentally retarded. Well, Melissa is far from mentally retarded. The girl is so very smart it is only her body that won’t work for her. She knows what she wants and finds ways to let us know. Besides, Lindsey and Josiah are lightweights too so I think part of Melissa’s small body is genetics.

She rolled over to her right today! She has been rolling to her left side continually for about 4 months now but never rolls to her right until today! She actually rolled all the way to her tummy when rolling to her left us usually just rolls to her side to get off her back. She stayed on her tummy for over three minutes before complaining. She hates to be on her tummy so I was very impressed. In fact, it was as if she was trying to figure out how she rolled that way.

She is cocking her neck around to study and observe people more and more. She is using “yes” and “no” more and more often when being asked a question. We still don’t know if she is really answering us, but it does seem to be appropriate for the question about 75% of the time.

Well, Melissa is four now. She celebrated her birthday on July 28th. I can’t believe she has been with us that long especially since she seems so small. She reminds me of Shelby and Lindsey when they were about 1-2 years old in the way that she looks and how wild and crazy her hair is. She still has that rooster tail on the top back of her head that she was born with. Her hair sticks straight up and flops over just like a rooster tail (Yes, we live in the country and have chickens).

I can’t get over how muscular her arms and legs have gotten. Every night when I put her to bed I am amazed at the size. I can’t even get my hand around her thigh anymore. Just a year ago her legs were just bone not a lick of muscle. They were so small I could overlap my hands around her thigh. Now that she has muscle in her thighs and butt cheeks I think one of these days she should figure out what to do with them.

She is getting so strong. When we sit with her in our laps she will pull herself forward into a sitting position as long as we have our hands on her side but really our hands are just there for balance. She is also consistently for the last month or so rolling onto her left side and holding the position on her side. At her last pool session her PT had her push up to a sitting position from her side and she did so well with it.

Melissa is still doing pool and we are so grateful for the opportunity. Melissa is more motivated in the pool then anywhere else and the I think a lot of her strength has come from being in the water. She loves being able to move herself around it gives her a freedom I can’t imagine.

I am noticing that her bite pattern is changing and that she is better able to chew up bigger pieces of food. She has been enjoying when dad feeds her grapes lately. She is still trying to help us feed her and is still getting covered with food by the end of the meal.

She is back at horse therapy with the STARS program in Brookings, South Dakota, this summer. Other then the first time she is really enjoying riding. Her big sister Shelby volunteers with STARS so Melissa gets to ride with Shelby. Last summer we used a life jacket upside down on Melissa to get her stable enough to sit on the horse along with a neck brace. We put her legs through the arm holes. This year all we need is the neck brace to make sure she doesn’t come down and hit the horn on the saddle. What a big improvement! We are so grateful to all the people who volunteer their time to make STARS happen. Thank you to all of you!

Yes, Melissa is still seizure free without medication!!!!!!!! Praise God! We are going on two years!

She continues to thrive spending time with Tucker, Lindsey, and Josiah. She eats up the attention that the three of them give her. She also loves taking 4-wheeler rides with dad and being outside.

I

Melissa is doing very well. Other then a couple times when she has been sick she has been seizure free for almost 2 years without medication!

She is beginning to roll over more and her back strength has improved alot. She is beginning to fill out she now has muscles on her legs no more stick legs! At one point her legs were just bones and she had two deflated bags for butt cheeks. She is looking healthier and healthier all the time. She is smiling everyday and we can usually get her to laugh at least one time a day.

She is trying to “help” feed herself which usually just ends up with everything spilled all over her since she only has gross motor skills with her hands and can’t grasp the spoon. We have been using a feeding cuff more often while feeding her and that has been very helpful in limiting the mess when she want to help feed herself.

She is using a switch with her speech therapist and OT she is very consistent and understands the cause and affect that when she hits the switch something happens.

She is still doing swim therapy and her PT feels Melissa motivates the best when she is in the water.

We are planning on doing horse therapy with the STARS program again this summer as well. Melissa really enjoyed being able to ride with her big sister Shelby last summer. Shelby volunteers with the STARS program.

Melissa continues to do well. She has been very healthy really since she was born. She continues to be seizure free. Her strength continues to improve. We can see the strength in her legs now. Her legs used to be just bones it was so sad to see how weak her legs were. Now I can’t even get my fingers around her thighs-yea! While she is not sitting up or consistently rolling over her strength is amazing. She is tolerating being in her Tumble Forms stander for up to an hour at a time-wow! When in her Amby jump-jump she does a better job of not falling to the side. She can roll over when she really wants to or when Lois her physical therapist tricks her into rolling.

She is enjoying letting us carry her in the Kozy Carrier and the Moby wrap again. I also carry her in the framed back carrier as well. She does such a good job of holding the back of her head up when she is in all of the carriers.

She just got new ankle-foot orthotics (AFO’s). They are more flexible and she tolerates wearing them for longer periods of time.

We found a tricycle that works well for Melissa. I was so excited when I found it at a second hand store.

Melissa is still swimming on Fridays. Her physical therapist loves working with her in the pool because she says they always have great sessions in the pool. Melissa’s favorite time of swimming is when Lois lets her swim on her own with the horseshoe collar on. She can dog paddle quite well on her tummy and her back.

We started doing brushing with Melissa. Since starting it she is reaching and grabbing things more consistently. We have also been working trying to get her to feed herself. Her occupational therapist made a cuff that goes around her hand to hold the spoon. She is tolerating using the cuff for longer periods of time.

To those who don’t know Melissa you may wonder why these small changes are so very exciting. To us we were given no hope for Melissa from the doctors so the fact that she is even still alive is a reason in and of itself to celebrate. This fact makes everything no matter how small it may seem very big to us.