Hyperbaric Oxygen Therapy-we are still in WI we decided to continue doing treatment for another week. When we leave Melissa will have finished 106 hyperbaric treatments since she started treating at 1 year old.

I am trying not to pay attention if we are seeing changes in Melissa. The first time we came I remember feeling like she was up and down the whole time during treatment. It wasn’t until after we got home that I was able to look back and see just how far she had come. That is what I am planning on doing this time as well. Although we are seeing changes.

It is hard to believe that before we did hyperbaric the first time Melissa had lost the will to live. She was just an empty shell. To look in her eyes she wasn’t in there. Most nights I went to bed wondering if she would still be with us in the morning. It was so hard as a parent to watch my child fading before my eyes and being powerless to do anything about it. After her first 40 treatments of hyperbaric I no longer had to wonder she was so changed and the life had come back to her eyes-she was with us to stay! This is one more things that hyperbaric has done for Melissa and our family. I truely have to thank Shannon. She made hyperbaric possible for Melissa. Thank you Shannon!

It has been many months since I have been on here. So much has been going on. We do not have Internet at home so it makes posting so much harder and before we had dial up which in its own way didn’t make posting very easy.

Melissa had a birthday she is now 5 years old! Where has the time gone? She enjoyed her special cake we made for her. She even reached out and grabbed a handful of frosting and stuck it in her mouth. We were all cheering her on as she has not done that before.

We were presented with a wonderful opportunity to do more Hyperbaric Oxygen Therapy. So here we are in Madison Wisconson for a month. Today is day number three. We will be doing another 40 treatments. When Melissa is done she will have had 95 Hyperbaric treatments. We have been very grateful for this treatment as it really gave us Melissa back. It has been so neat listening to the testimonies of other families who have seen amazing results with this treatment.

Well, since Feb we have done so much with Melissa. She was still continuing to receive PT, OT, Speech, and Pool therapy until the end of school. We are now on the summer schedule (ESY) which is much lighter.

We had Melissa’s IEP in May and the new school administration recommended that Melissa attend Children’s Care Hospital and School (CCHS) for school. Children’s Care is a school that only deals with children like Melissa. I got the 25 pages plus all supporting paperwork filled out and turned in to them and Melissa was accepted (really I didn’t have a doubt that she would be accepted since she has worked with at least 6 therapists at CCHS over the last four years). We still need to have a meeting when we get back from WI to make a plan with all of her therapists as to what services she will get while she is there. She will be going two days a week right now to transition and we will see how she does before we decide to up that time.

We had an adaptive communication evaluation and I thought that we would be leaving with different ideas and equipment to help transition Melissa into some form of communication. How wrong I was we left with them suggesting only more switch practice. Melissa is so board with the switch she want something else to do and she gets so frustrated when she can’t get her point across. How frustrating for us and Melissa.

We are so excited we got on the local Family Support Network which as been great for our family. The goal of the network is to help with things in a way that will help keep children like Melissa in the home. They purchased a special needs jogger stroller for Melissa. We love that stroller. We live in the country 2 1/2 miles form the nearest paved road and all we have is gravel and grass. Melissa’s other chair would shake so bad I was not joking when I would say it was giving her shaken baby. So because of this she didn’t get to go out as much. Now with the new chair it is so smooth off road. Thank you Family Support!

We are not having as much luck figuring out what to get for a wheel chair for her. As a parent how am I suppose to decide which chair will be best for my child for the next three years from a picture? That is what we are expected to do. We need to decide and soon as Melissa has outgrown her Kid Kart and needs a chair for school that has a tray and good side support. Plus once we figure it out it will take a good two plus months to get the chair(you’ve got to love the approval processes).

On the plus side we continue to see changes in Melissa. She is so much more social she smiles all the time. She is so close to sitting up she now has enough strength she just needs the balance to do it. She is reaching for more things and when the kids eat in front of her she watches their every move and tries to grab their food out of their hands. She has also put on over 6 pounds in the last six months! That is huge for Melissa. She has a few special toys that she can hit and make them play noise she gets the cause and effect from these toys.

Life is good and we can’t wait to see the changes yet to come for Melissa.

It is February of 2009 already! Where does the time go? Melissa is 4 1/2!

Melissa is outgrowing her Kid Kart. We need to figure out how we are either going to grow her chair bigger or if we are going to get a new chair for her what we are going to get. She is also in need of new AFO’s (ankle foot orthoditcs basically a fancy term for braces). We will be doing new casting for her AFO’s. We will also be doing an adaptive communication evaluation. I am very curious what an adaptive communication evaluation will entail as we are new to this one. Wow, lots to do.

The bigger kids are involved with a group called Living Legacy Academy. I help out when they are there and Melissa is able to go into the pre-school class. She enjoys watching the other kids for the hour or so that she is in there.

Melissa is in some respects getting easier to take out and about and in other respects getting harder to take out. She is getting easier just because she is more predictable in when she will want to to eat, drink, etc. It is getting harder because where do you change a 4 1/2 year olds diapers? Do you pay for her when you go on field trips? She still communicates by crying and complaining to get what she needs because she doesn’t use words yet.

I know that some people ask how can I tell people that Melissa is in a constant state of change and development yet she still can’t sit up by herself or feed herself? I know it may be hard to understand to those who don’t see Melissa on a regular basis but it is true. Melissa has only improved in development in the last three years. When you have a child like Melissa any improvements no matter how little is more then what the professionals expect to ever see with her. We celebrate the little things like going from pulling back when something was put in her hand to reaching out and grasping it for seconds at a time. We celebrate that her legs can now hold her up for several minutes at a time (with someone holding her to keep her balance). So while to some it seems as if she is in the same place to us we know that she has come so very far with her development!

I guess the poem”My Child” says it best.

“My child is on the honor roll”
“My kid just made the team”
“My daughters the greatest ballerina”
“My son’s a musical dream”
We all have moments we feel so proud,
of the feats our children achieve
But the smallest task may also be,
the most beautiful gift to receive.
Let me tell you something wonderful
about my amazing child.
I called out my daughters name today,
And she turned to me and smiled!!
I’ve heard them all but I’ve got you beat,
though your not likely to understand-
I reached out for my daughter today,
and my princess reached for my hand,
People see a child in a wheelchair,
and feel sad or even disturbed-
but that magical little laugh-
is the sweetest song I have EVER heard!!

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.