Great news!!!!!!!!!!!!!!!!

Kermit began attending the MAAP program with Danny the week of Thanksgiving. We are so excited and also grateful. The staff have been so patient with Kermit as he transitions into his new role. It's pretty confusing for Kermit. After all, not only the staff but the participants as well are all adults. Kermit has to learn who exactly is in charge? Some of the staff have been around dogs, some have no experience at all with dogs. We still have some kinks to work through of course but are confident in Kermit. He is such a smart dog and really does aim to please.

Perhaps the thing we've noticed the most is the almost immediate improvement in the bonding between Danny & Kermit. Being together all day seems to really be having a positive effect on their bonding. The bonding is so important to promote and enhance seizure alert and assist. The closer they are and the more time they spend together, the more Kermit can do his job in helping us to keep Danny safe and free of injuries.

Good times

This summer we bought Danny a bulldog for riding down at the camping lot. 4th of July weekend we did our best but just couldn't get him to take a ride. But then labor day we coaxed him in a different way. We told him the bulldog was the only way he could get to grandma & grandpa's lot! Low and behold, that's all it took. And once Danny road in it he loved it (just as we had thought). Danny's loving his new ride! Kermit is still unsure about this sort of ride being safe enough for his boy. Kermit can be a baby at heart so we think he's concerned about his lack of desire to ride on the bulldog. But we don't let on about it. We let Kermit as
sume that we believe it's all for the good of Danny and only Danny.

MAAP is going great! They work a lot on Danny's speech and it's starting to show. He's really trying to use his words more to express his wants and needs. The staff are just so wonderful at the center. It has been such a blessing for Danny as well as us. We were so fearful of Danny leaving the school system and entering adulthood. But it has really been truly amazing. It's actually been a good change for Danny and more suitable for a 22-year old young man.

Friday Kevin & I visited several of the companies that contributed to our fundraisers. They were so excited to meet Kermit. We could never thank the over 300 people who helped us fundraise for Kermit. But hopefully all those involved know what a difference the help of Kermit has brought to our entire family. I have no doubt that in several years we will be able to take Danny on these types of visits more often. With the help of MAAP and Kermit the sky is the limit.

Update

We've been really busy lately. We are still actively fundraising for Danny's cousin's mobility service dog. It's been tough but we know we'll get there.

MAAP (Midwest Adult Autism Project) is going great. The staff work so much with him. They are in the process of setting some goals. They work on many things, such as parking lot safety, hygiene (Danny hates to brush his teeth), and speech therapy. These are just a few of the many things they work on.

The picture is of Danny's new adult-sized stroller. It took about 2 years to get the stroller, it was quite a battle as anything is when you're asking for help from the State. Kermit is so glad to get back to the mall as is Danny. We took our first walk in several years throughout the neighborhood. These moments make it worth the fight. It gives us a little more sense of 'normalcy' in our lives.

Danny & MAAP

Danny has been attending the MAAP program for 2 weeks now. The move has been bittersweet. While it's bitter because we miss the friends we've made at the day program, we have new friends and opportunities for Danny in the MAAP program. The new program is designed to set specific goals for Danny. They work daily on areas Danny struggles with. The main one is his expressive language. They are trying to improve Danny's use of his words. They are also trying to get Danny to be more receptive to having his teeth brushed. He's having a lot of dental issues and his reluctance to brush his teeth is no doubt a part of the problem.

Kermit will hopefully be in the program soon. There are several participants who are afraid of dogs. They are trying to calm these student's fears before trying to bring in a huge dog like Kermit. With the way Kermit's skills are improving we are eager to see Kermit attend all day with Danny soon. We are hoping the MAAP program can help Danny with tethering, which is something we have not mastered on our own.

The top picture is how Kermit loves to ride in the van or truck. He is so funny. He has chosen his own seat. He will even run to the other side of the van and wait for someone to open his door! Kenny usually just sits in the back now rather than disappoint Kermit. But we still refuse to consider his spoiled! We figure it's just that stubborn bloodhound personality coming out in him! LOL

Kermit has been one busy guy. He's attended several fundraisers, alerting seizures, and him and Danny even attended their 1st wedding! Danny's oldest cousin, Jimmy, got married to his sweetheart, Tiffany, a few weeks ago. We know we're getting more confident with both Danny & Kermit when we tackle a wedding!

Kermit has also attended several 4 Paws fundraisers now. There are about 25 4 Paws dogs in the St. Louis area which is awesome. Danny's cousin, Tricia, is fundraising for a mobility dog from 4 Paws. Kermit, as well as other 4 Paws dogs, are helping host a trivia night on July 30th at St. Ann Community Center. We are hoping to see other 4 Paws fans there to support a wonderful organization and terrific young lady.

It's been a pretty tough summer. Danny's had several bouts of cluster seizures. This is where he'll have multiple grand mals or continious myclonics which really gets him down and takes so much out of him. It continues to amaze us how resilient and strong a young man he is.

Good news & Bad news

Well, the bad news is that Gary Busey got fired this past Sunday. Although it's disappointing, it was a blessing that the Center for Head Injury had the opportunity to be one of the charities supported by the Celebrity Apprentice Show. We've been told that the center's phones have been lighting up since the airing began. We still wear our Team Busey shirts with pride!

The good news is that Danny will start the MAAP (Midwest Adult Autism Project)in May. He will attend the day program once a week and the MAAP 4 days. This works out good because by going to the day program once a week, Danny will still get to see all of his friends that care so deeply for him.

More exciting news is that Kermit will attend MAAP with Danny! Kermit and mom already met with the facilitators of the program and Kermit did awesome. He was already taking commands from them by the time we left.

In the past month we've attended 4 trivias, 2 of these were with Kermit for families fundraising for a 4 Paws dog. It's been an honor to attend and share our wonderful experience with 4 Paws and with Kermit. What a blessing he has been to not only our family but to other's. Danny's cousin, Tricia, is currently fundraising for a mobility assistance dog through 4 Paws. We can't wait for her trivia in July and soon I will add more details on Danny's blog. Go Gigs!

We recently went on an indoor track at St. Louis Mills Mall. Kermit absolutely loves the mall! After all, this is one popular place that 4 Paws took the dogs to practice public work and commands. Kermit becomes a different dog when he's working, whether he's working at home or in public. He takes his work very seriously. The track was a success as always. Even with the wind outside. The wind makes it difficult because the skin cells scatter and are harder for the dogs to follow. But the bloodhound in Kermit kicks in and he's on it with no problem. Danny did great at the mall. We went early before they opened all the stores. It was a really fun experience and we even got to see the St. Louis Blues practice. Although Danny & Kermit didn't seem impressed with hockey. After all, their hearts belong to the basketball court!

Kenny was a big help at the mall. He is so good with Danny. Even the day program Danny attends has commented on how wonderful Kenny is with Danny. Kenny volunteers a lot with individuals with special needs. I'm so thankful he's been able to learn such care and compassion for other's and is so eager to help improve other's lives. The mall pictures were on Kenny's camera so I stole a copy one of his friend's snapped of him at school. He attend a tech school and is in their masonry program. We're proud of Kenny. I know we spend a lot of time on this blog talking about Kermit and Danny, but we're proud of all 3 of our boys! Just the other day at Taekwondo a young lady whom has disabilities asked the instructor who was working with her if she could have Kenny help her. She said he does the best at helping her. I was humbled as a mom. I am so grateful that instead of being resentful of the life he's been dealt having a severely disabled sibling that he has instead found the joy, strength, and special gift that special people bring to this world.

Contratulations!!!!!!!

Congratulations to Gary Busey & The Center for Head Injury Services located here in St. Louis. This is the Center that gives support to Danny through their day program and soon will also serve him through MAAP (Midwest Adult Autism Project). We are so proud to have Gary Busey represent all of those who struggle with neurological conditions and strive for independence and acceptance from the community. The center does wonderful things to help so many individuals reach their highest potential. You may need to copy/paste the link into your browser address search. I'm not technologically savvy! This is the link from when they first announced the show and Gary Busey selecting the center. The news was there again Monday when I was there so I heard they were doing another story soon.

http://www.ksdk.com/news/local/story.aspx?storyid=247961

Celebrity Apprentice

As many of you may already know, the organization that runs Danny's day program is one of the charities on Celebrity Apprentice. Actor, Gary Busey, has chosen the Center for Head Injury here in St. Louis as his charity. We're not sure how much this means for the center but any amount will help. Danny loves his day program. He just recently got approved to receive funding for an autism program at the same center. The program is for adults with autism. Most of the focus these days is on children, but now these children are growing up and still need services. I hope you will consider rooting for Gary if you are a fan of Celebrity Apprentice. This could do so much for all the people that the center serves.

Seizure recovery

Danny had a tough weekend with seizures. He had 2 during the night on Saturday and another Sunday morning. We think he bit his tongue again during the first one and now he just doesn't want to eat or drink anything. Danny and Kermit were both troopers as always. He wouldn't leave his side all night and into Sunday. He just hates when Danny feels bad. While Kermit can't make the seizures go away, he can provide comfort. Kermit did a good job alerting but it is harder to pinpoint when they will come due to the clustering of them. The trainer said it does become difficult for dogs when the seizures start running together. But Kermit did great.....he just stayed with his boy to make sure he didn't miss anything.

We sometimes wonder if Kenny is becoming desensitized to such a life of unexpectancy. Between the autism and the seizures you just never know from day to day. When we told him we were going to call EMS and to keep the dogs with him since they would probably be anxious with all the commossion, he just said no problem and stayed in his room. While we worry about him dealing with so much, especially with Danny being his only sibling, we remember that he is building compassion and resilence with each day. I think Kenny has learned to respect Danny for what he goes through but how strong and happy Danny always is. We're lucky parents and truly blessed.

SNOW!!!SNOW!!!SNOW!!!

Well, while we're not loving the 28 inches of snow we've had so far, the dogs sure are! Especially Kermit. Pancake likes the snow but the old girl (she's 13 now), just can't handle the cold anymore. But then there's Kermit. The last big snow we had he totally plowed through the yard (we captured it in a picture). He comes in with snow and sometimes icicles running down his mouth! He is so funny! I guess it's fitting since Danny is cold natured as well! BTW....this is by far one of the best pictures we've ever gotten of Pancake! I caught them both off guard and had a treat waiting for them when they came in from outside. LOL

Beyond a Blessing

This will probably be an emotional post. Kevin & I are both in complete awh as we speak. Experiencing seizure alert as we have these past few months has been nothing short of a miracle. Over the years I've struggled with the belief in miracles. After all, when you have a child like Danny and experience the pain and suffering involved with intractable epilepsy, you struggle to just not loose hope. The constant fear of severe or even fatal injury, lurking in the wings, can be brutal and so scarry. You constantly pray and watch over just fearing the day will come when you can't keep him safe. But now we have Kermit. Our angel sent here from God no doubt. Yesterday Kermit was alerting. Following Danny around, sniffing, starring at us as if to seek out reassurance that all will be ok. We find ourselves comforting Kermit when he alerts us. Kermit has that same fear, he knows it's coming, and wants to keep Danny safe. Except with seizure alert there's one big difference. Kermit really knows it's coming! What a scarry thing for Kermit, since many times Danny doesn't know nor us. Kermit continued to alert throughout the day and Danny started showing signs. At the dinner table we swiped the magnet. This seemed to have worked because Danny appeared better. Sunday came, today, and Danny was up at 6 AM (not that strange for Danny). Kermit always wakes when Danny does, but today he was up and ready to start his day. Kermit began alerting the minute his paws hit the floor! He was alerting to both Kevin and I. Dad went to leave for Walgreens. Kermit was alerting with me the entire time and looked concerned that dad was leaving. Dad was hesitant to go but we needed Danny's medicine and he was due to take it in about 30 minutes. He asked if we should put his helmet on. I said, no, sometimes Kermit can alert hours before the seizure comes and I would just shadow him like we do quite often. I told him I would wait until he got back to give Danny a bath but he really needed one so I would give it to him early before the seizure came. We considered swiping the magnet again like at dinner the night before, but many times this only prolongs a seizure. We would rather have the seizure at home than at day program on Monday or during his sleep. Dad left for Walgreens but soon returned, he forgot his coffee! Kermit continued to alert us, Danny even threw Kermit a toy (well, a slipper but we won't go there) and Kermit wouldn't take it. Very odd for Kermit, but not odd since he was alerting and was very anxious and worried. Danny had a huge myclonic jerk. I yelled for Kevin to get the magnet! Swiped the magnet, Kermit was going crazy. Danny began seizing. Kermit barked and was on it big time (as he always is). We gave Kermit a hot dog for praise and then his Kong with peanut butter to keep him occupied so Danny could rest. Kermit is all over Danny after a seizure! I just can't describe how this feels. To know that Kermit is helping us provide safety and aide to Danny. I think what keeps us in aw is that this could save Danny's life. If anyone ever says they don't believe that a dog knows and can sense a seizure (like people have with us)please tell them they haven't met Kermit. We are going to try and get the next one on video. We would love to share this miraculous gift that God and 4 Paws has given us with everyone who wants to experience it. Thank-you all for this blessing. While there's no cure for Epilepsy, there's obviously hope. And that hope is in the form of these 4-legged creatures!

Technology & Kermit!

Kermit is like many dogs with technology and machinery.....it can be quite stressful and scary! Kermit flees the scene when it's time to vacuum. When dad runs the saw, Kermit's not a happy camper, just like Pancake. Well, then he met the shredder. The worst part for him was that Danny was working the shredder. That was really bothersome for Kermit. He kept looking at us as if to say...."Do you really think he should be running the loud machine that's chewing up stuff!?!?!" The other night Kermit would not get out of the truck for dad & Danny. Dad said that at first he thought he was alerting a seizure but usually if Kermit's alerting he would not want to get in the vehicle. If he senses a seizure approaching he hesitates for us to leave, but not to go in the house where it's safe. Then dad finally figured it out! Kermit kept hunkering in the backseat and was starring at the bluetooth on dad's ear! Dad just got it for Christmas and this was Kermit's first experience with this new tool. It was really quite comical. A 100+ lb. dog scared of all these electronics and gadgets. Dad now has to watch the use of his gadgets around the sensitive Kermie.