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.

Melissa is 3 1/2 years old already! I can’t believe that it has been almost 3 years since she was first hopitalized with seizures.
Several people have asked me lately how I do it, if I ever get discouraged. The answer to that would be yes, I am after all a mom and only want the best for my children. Looking back over the last 3 1/2 years we are at such a different place. There were some very difficult times. Many nights I went to sleep wondering if Melissa would still be with us in the morning. Many times I would hold her as she was seizing and I would question every decision I ever made about her- was I doing what was best for her? I didn’t leave her not even to run to the neighbor for 14 months because no one else felt comfortable being alone with her if she had a seizure and needed Diastat or rescue breathing and quite frankly I knew if she died and I wasn’t there I would never forgive myself. People would tell me I needed some time for myself but for me being away from Melissa was not what I needed. Someone to do my dishes or laundry would have given me a break that I needed.
The months that followed her hospitalization took us one step forward and two back. Melissa was blind most days, her head control was so bad you had to hold the front and back of her head so she didn’t give herself whiplash(in essence it was worse then a newborn’s head control). She was loosing weight for no reason, when we supplemented her we had to use an syringe because she couldn’t suck out of a bottle. There was no spark left in her eyes.
I share this for those families who are in the mist of the worst. There is hope! Melissa is thriving now! I look at this little girl (she is still little wearing 24 month clothes) and thank God for how far she has come. No, she doesn’t sit up or feed herself yet. But, she smiles and laughs, and she can see, she can eat, and yells when she needs something, she babbles, and coos. She can hold her head up without giving herself whiplash! She can bounce herself in her hamock, she is seizure free without medication. She is growing (as slow as it may be it’s growth all the same)! She knows what she likes to eat and drink and who she wants to talk to and ignore(usually her big sister Shelby-accually I think it’s a game between the two of them). She is a very, very smart little girl trapped in a body that as of yet is not working for her. She thinks and acts like a 3 1/2 year old! Although, she doesn’t sleep like a 3 year old and I certainly could use some sleep!
So while yes, I do get discouraged at times I think often about where she was 3 years ago and more often then not I know that even if Melissa never walks or talks that because of her our family is becoming all that we can be!

We have had a whirl wind couple of months. We are enjoying all the talking and smiling Melissa is doing now. The last few weeks Melissa has consistently been saying uh-huh and uh-uh when we ask her a question. It seems to be the appropriate answer at the appropriate time.

Melissa is still seizure free. We are to 11 1/2 without seizures. Almost to a year!

We started a 10 week Hippo-horse therapy program with Melissa at Handi Riders the beginning of June. The Hippo therapy is done with a physical therapist-basically they use the horse for physical therapy. The first couple of times she screamed. We are not sure if it was because she was working so hard, having a bad day, scared, or because of the lack of support for her head and trunk(she is still cannot sit up or roll over consistently). We were trying to figure out how to support her better I was thinking Thera-Togs but, I knew even if we ordered them they would not get here till we were done with the summer session. One of the therapists at the stable suggested a life jacket. The next week we found the perfect life jacket in our basement. We tried it right side up and found it too bulky to use with the helmet and the neck brace we were using on her so the same therapist who suggested the life jacket suggested flipping it upside down and putting her legs through the arm openings. By golly that worked! So now when she rides on the horse she has her helmet, her neck brace, and her life jacket flipped upside down. Ever since she is liking riding on the horse.

The end of July she started riding horse with STARS (Special Training and Riding Skills). This program does not use therapists (unless you classify the horse as a therapist). It uses some great volunteers one of which is Melissa’s sister Shelby! With the STARS program she rides four times in two weeks. She got to ride with Shelby on the horse with her-how fun. Today she refused to take a nap and wound up falling asleep while she was riding! They got some great pictures so hopefully I will be able to add them to the sight at some point.

She is still doing pool therapy every other week and loves it. I think some of her best work she does is when she is in the water. She still has to get her hair wet before she is willing to concentrate on anything else. She will keep trying to throw her head back until she succeeds in getting it wet!

Melissa has gained so much strength by bouncing herself in her hammock. She can use her feet when she is on the ground to push her butt and back off the floor so she is making almost a bridge with her body. She has the strength now she just has to figure out what to do with it.

She has rolled over about a dozen time in the last month. She rolled over three times in the middle of the night in the last week. The three times she has rolled over at night she starts to cry because she can’t seem to get back over.

She is enjoying going on our trampoline. We don’t jump with her just little bounces to get her moving. Being outside has to be one of her favorite things besides bouncing and eating.

She is able to drink out of a straw sometimes now. 1-2 times a day we will use a cup with a straw with her and I would say at least 5-6 times each time she will suck out of the straw! In fact the first time I was working with her she didn’t seem to be getting it until I moved her so she could see my face and said “Melissa you have to suck out of it like you do your bottle”and then I demonstrated with my lips. The very next time I put the straw in her mouth she sucked! I explained that several more times and she sucked almost every time. Then later she did the same thing for Shelby after Shelby told her how.
I have definitely found that Melissa works better when given clear to the point instructions. After all just because she can’t use what is on the outside does not mean what is on the inside doesn’t work!

Melissa is still on the Goji 4 oz a day in addition in the last two months she has been worked on by a cranial sacral therapist, osteopathic physician, and a chiropractor.

We are so thankful for this time of moving forward with Melissa when for so long we wondered if she was even going to live.

Life is keeping us busy. Melissa is still seizure free! 8 1/2 months now-yea!!!

She has become so social. I remember the months that I would hope to get just one smile a week out of her. We got that one smile if we were having a good week otherwise it could be weeks or even months before we would get just one smile. Now we get many smiles a day! She studies us and responds to us daily. She is so smart it is obvious that she understands.
She is trying to use some signs-more, all done, drink, and hungry.
When given the choice she will reach out and choose what she wants. Her OT Lynn is using a special switch with Melissa. Lynn records a word or a phrase such as “turn the page please” and then reads or plays with Melissa and Melissa has to hit the switch at the right time to communicate what she wants. She has been doing very good at hitting the switch at the right time.
Melissa has constantly been reaching out for the spoon when I feed her. We are going to work on getting Melissa to feed herself this summer.
She has been getting pool therapy 2x a months since Feb. She loves to be in the pool. She can do things in the pool that she can not do on land and loves the freedom of movement. At times when she is in the water her PT Lois will put a horseshoe life jacket on Melissa. The life jacket only hold Melissa’s head out of the water this enables her to be able to kick and splash herself all over the pool. She has even taken steps in the pool. She is so funny-she has to get her hair wet, she will keep trying to throw her head back until she does.
Melissa has the emotional development of a two year old-complete with tantrums when she doesn’t get what she wants.
She has a free standing hammock called a Nature’s Nest. She loves to be in there she has figured out that if she throws her legs over the end and pumps them back and forth that she can get herself bouncing. She can do that for a long time. Needless to say her legs are starting to get some muscle on them. They are not just bones anymore!
She love to be outside and she is usually in a better mood when she gets to spend time outside. Today Kelly turned an old baby bike seat into a swing for her. She was loving that.
We have her IEP (individual education plan) on Tues she is moving up from the Birth to 3 program to the school district program. Luckily she will keep all her old therapists Jennifer, Lynn, and Lois because it takes Melissa about 6 months before she warms up to a new therapist and will work for them.
We went to Handi Riders outside of Sioux Falls yesterday to have Melissa evaluated for horse therapy. It is looking like we will be doing horse therapy on her this summer. It is a 10 week class one time a week with a physical therapist. I have heard such great feedback from other parents who have done this therapy. I can’t wait to see how Melissa does on a horse since she really likes being outside and she likes animals.

We are still seizure free!!!!!! 6 months now!
Melissa continues to improve mostly emotional. She is a 2 1/2 year old emotionally. She is trying to sign some words but it is just like when a one year old is trying to learn how to talk we don’t always realize she is trying to communicate with us. We are working on signs for more, all done, hungry, thirsty, and bath.
She continues to gain strength. I put her on her tummy now for tummy time and although she doesn’t choose to use her hands most of the time she is tolerating it more. She has a corner chair that she can sit in for up to an hour reaching out and touching and even grabbing toys in front of her.
She also has a baby hammock called a Nature’s Nest that she enjoys being in. I am so grateful to my friend who has loaned it to us. She is on the verge of being too big for it and we are trying to figure out how we can rig something similar up for her as she grows. When she is super crabby if we put her in the hammock and turn on a video with music and nature picture she usually quiets down.
She has increased her food intake. Most people can not believe the quantity of what she can eat-including myself. She is growing and she is out growing her 18 month clothes very quickly.
We start pool therapy 2x a month this week. We have had a couple of trial sessions and she just loves being in the water in the pool. Her P/T put a horseshoe collar life jacket on her and her arms and legs were free to move. She was able to move herself back and forth across the pool. When doing standing in the shallow end(which comes to her neck) she was trying to take steps!
We pick up her Tumble Forms stander on Fri. I can’t wait to see how she does in the stander.

I feel we are on the forward path still instead of the back and forth that we dealt with for so long. Keepin-on keepin-on

We are over four months seizure free!!!!!

Melissa has changed so much in what is going on inside her head. She knows what she wants and tries to let us know. She watches what is going on with more intent and is now cooing and babbling at times when we talk to her.

Her food allergies are getting less intense and since being seizure free wants food with varitey and flavor.

She is sitting with less support hopefully soon she will be sitting on her own that would make feeding her eaiser. If we put her on her tummy she can roll over pretty well. She is pushing up when on her tummy for brief periods of time. This is such an improvement since for the longest time her hands were clenched in front of her and she didn’t push at all with them.

We were blessed to have the third grade sunday school class at the Lutheran Church in Volga do a fundraiser for Melissa. We were able to go to church, meet the kids, and have lunch with them. They did such a great job and raised $300.00 to go into Melissa’s fund.

Melissa is still seizure free!!!!!!!!!! We are so excited! If anyone is interested in the Goji Juice you can order it at www.alainakerkhove.freelife.com We really feel like that has played such a role in the ending of her seizures.

She has been very challanging the last several weeks as so many things are changing for her and we feel like what she wants and needs is constantly changing(this is a good thing) although very trying.

She has rolled over several times in the last couple weeks although I feel like she is just teasing us as several times she has rolled over in one week and then not rolled over again for several months. One of these days she is going to roll and not stop that is why this website is called hope4melissa because I know she will do it!

I can’t minimize the fact that having a special needs child takes alot of energy and patience to which I am constantly reminding myself I can do it and she will do. She has come so far the fact that she is still with us says so much in and of itself!

She is not sleeping well which is very wearing on me and even dad on the nights I’m just too tired to deal with it.

Melissa has taught me that what I thought I could handle is not as near as I’m able. She has also taught me that when I thought I knew alot she has taught me so much more.

My prayer is that this website can be a blessing to countless other families. To be a source of inspriation and information that was not avalable to us when we first started our journey.

I am very happy to say Melissa is 41 days with only one cluster of seizures and 30 days with no seizures!!!!

She got really sick in Aug and that is when the seizures quite. I’m not sure exactly what did it as we did many different things for her in Aug. We did up her Goji when she was sick though and that is when the seizures quit so I’m guessing that that has played a big roll in the no seizures so I have continued to give her more a day. We also started seeing a new chiropractor and did a week of crainal sacral therapy on her.

She got ankle and foot orthotics(braces for her ankles and feet).Lois her Physical Therapist(pt) calls them Barbies braces as Melissa still wears a size 1 infants shoes. She has got to have about the smallest braces made.
We also got a stander for her that we are bowowing from Children Care Hospital and School which is where Melissa’s physical therapists and occupational therapist come from. The braces are to help her so that when she is in a standing position she doesn’t roll her feet out like she was doing. So far she loves to be in the stander an can handle it for about 30 minutes at a time.

Everyday she is walking herself around in circles when she is laying on the floor on her back. Last week she grabbed one of the toys off her gym pulled it off and bopped herself in the face with it! She was so mad as she has never done that before.

We are so excited at the changes we are seeing in her.

Our computer has been on the blink for well over a month so I’m sorry for not posting udates for a while. I have great news! Melissa has only had one seizure in the last 22 days! She is smiling and laughing so much. She rolled over by herself without anyone in the room. Every other time she has rolled over we were working with her. So that is very exciting. She is growing like crazy and eating to show for it. I will update more as I get to another computer or we get ours fixed.