Getting Back Into the Groove

The holidays are over, winter break is over and the kids are heading back to school and their regular activities. The blog will back tomorrow (Wednesday).

Bowling with the Trio

Today we tackled one of the things on my New Years list! Plan more things with the kiddos no matter how daunting or tiring the outing may seem. I hope this doesn't sound like we hate to go out or that we hate to take our kids anywhere. That is the furthest thing from the truth. There are many things that keep us from doing some of the things we want to and changing that is a work in progress. It's one thing to no longer have a man on man defense when it comes to the parent to child ratio, but it's a whole other ballgame when you have a child with disabilities. While Little J is doing great walking, he still can't manage long distances and he can't walk in random environments unattended. Peanut J is a firecracker and there is a reason we call him honey badger as well. Honey badger don't care. Honey badger wants to do what honey badger wants to do when he wants to do it, so managing him is another matter. Thankfully, Princess J is great out in public and does a great job listening and staying close at hand. She is however 5, so keeping an eye on her for her own safety is just as important as managing the boys.

Today, we decided to take the trio bowling! It was lots of fun. I thought we were in trouble when after Peanut J's first turn, he didn't want to stop and screamed at the top of his lungs when we pulled him off the alley for Princess J's turn. Once he figured out that every time mommy bowled that his turn was up next, he did great! So proud of him! He even cheered for everyone during their turns as well! It was Peanut J's first bowling trip and as time went on he even bowled a spare in one frame! Of the trio, he got the highest score....bowling shark?

Little J had a great time! He loved pushing the ball down the assistance ramp and watching and waiting for it to knock over the pins! He was giddy everytime it was his turn!

Princess J, had a great time! She's still striving for her first strike, and I think we sang the Yo Gabba Gabba! song...Keep Trying a few dozen times. It didn't happen this time, but she'll keep trying!

After a bowling game, we headed over to McDonalds for some well deserved Happy Meals!

Peanut J Bowls for the first time!

Peanut J bowling with daddy

Little J (who's not so little anymore) loves bowling!

Princess J waiting for the the ball to get to the pins

Catch Up on Reading!

So, one of my New Year's Resolutions is to read more! So, every month on the 4th, I'll be checking in on my reading list and hoping that some of you might leave book suggestions too!

This last year was not my best year for reading. I found it hard to carve out time to read. Usually the times I could carve out were short and were hit or miss. When it's time to pick up Little J from school, I usually get there early so I don't have to fight with the pick up line or feel rushed getting in to the parking lot for disabled student pickup. Most of the time in the past Princess J and Peanut J would fall asleep and I could use that 30 minutes being parked to read up....the naps are becoming hit or miss...so the reading has become the same. Sooooo....I've been trying to make a better effort to find other moments in the day to read...once we're back to the usual schedule, we'll see how this works out. For now though...here's what's on my list of reads....

Here are my next 5 books on my reading list:

1. Notorious Nineteen by Janet Evanovich

2. Following After Trek by Jarret W. Ingram
-This is the link to the paperback on Amazon, I do have it on my Nook, but for some reason it's no longer showing up as available...If you'd like to follow this family's story you can follow Chelsea Ingram's blog Our Sonny Life. This family is AMAZING! I couldn't wait to read about their adventures and Chelsea's words will touch your heart as she shares her family's story and that of her youngest son Trek Atlas.

3. I've Got Your Number by Sophie Kinsella

4. The Girl Who Played with Fire by Stieg Larson

5. Nanny Returns by Emma McLaughlin and Nicola Kraus

6. Gone Girl by Gillian Flynn

7. Last Night at Chateau Marmont by Laren Weisberger

So, there are my first 7! I have quite a few more on my list, but as I cross some of these off, then I'll add more and just keep the list short. It might get a little longer in blog posts on occassion. So, what's on your reading list? Please share!

A Quick Catchup with the Trio!

This last year has been a crazy and wild ride! I don't even know where to begin really.

In the last year, we've had a 2nd grader turn into a 3rd grader, a preschooler turn into a kindergartner and a toddler turn into a preschooler! Lots of milestones there!

Little J is still at the same elementary school doing very well in the same class. He has been assigned a 1:1 aide which has helped him immensely! He loves his aide so much! What a great guy! His aide has worked so hard with him on so many things over the last year and a half! Little J did very well after surgery (which was my last post, last year). He is pretty much back to pre-surgery walking....except that now he is walking FLAT FOOTED and not on his tip toes! Yay! While it was a great commitment on our part to have the surgery done and deal with the casts and getting him back to walking, his aide has been essential in this as well. His aide did his excersises at school with him everyday and kept him motivated to keep going! THANK YOU MATT! Matt is the perfect match for Little J, he gives him just enough fun, just enough friendship, and the perfect amount of keeping him on task! Little J has been thriving at school and is beginning to see more time for mainstreaming! He's got friends at school and even went on a field trip with his peers.....and did awesome!

Princess J graduated from preschool in June and started kindergarten in September! She is at the same school with Little J and loves it! Since the school that Little J goes to is not our home school in the district, Princess J only knew a few of the kids going with her. As luck would have it, none of them were assigned to the same kinder class as she was. She was a bit disappointed at first, but found her new group of friends in class and maintained some of her friendships on the recess yard. We had her parent-teacher conference and Princess J was described as a hard worker, who is kind and caring to her classmates and friends. She's also an excellent reader! She loves to go to school, she loves to do her homework and she loves her teacher!  She also joined an AWANA club at a local church, that she sees many of her friends from preschool at she is really enjoying her time there and learning lots about the bible, Jesus and God.

Last, but definately not least....Peanut J, also affectionately called honey badger! He is one wild boy! OH MY! I love this little boy, but I think that if he'd been #2 in the lineup, there would not be a #3! He keeps us on our toes and he has one speed......FAST! I was a bit worried when we signed him up for preschool (and I think the teachers were too).....he never stops going! In September, Peanut J started preschool at the same place that Princess J went. The teachers there are AMAZING! Peanut J has done so well! He loves to go there! He is great at following directions, knows the class routine, lines up when he's supposed to and sits (for as long as he can possibly stand it) when he's supposed to. He loves his teachers too! He loves to pretend to call them on the phone and say "Teacher (insert 1 of 3 names here), I love you! I'm coming back!" He's too cute! He was in the angel choir for the school Christmas pageant, and stayed put on the risers the entire time....I was sure he was gonna bolt and run for us! LOL! He's working on potty training....but it's a slow go for him. He loves to sit on the potty, but still no success....it'll happen and you'll hear about it here though!  He graduated to his toddler bed. Right now, daddy has to go in and lay with him until he falls asleep....otherwise he'd be up all night climbing in and out of it!

Bringing the Blog Back....Take 2

So, it's been almost a year since I checked in on this thing after claiming I was bringing the blog back...sigh...epic fail!

Here we go with TAKE 2! Since it is January 1, 2013, what better way than to start the new year off right and get those New Years resolutions down on the blog and begin catching you up to where we are and where we've been.

We'll start here with my personal New Years resolutions. I definately have a lot going on and a lot on my daily plate. Some of it I do really well, some of it I don't do well, and some stuff has been on an unplanned hiatus. Thankfully, everyday is a new day, a new beginning and a new day to start over trying to get it right! So, here we go with the New Years resolutions!

1. Bring the blog back!

2. Read more!

3. Get Crafty more often! I sure miss scrapbooking and other crafts, so I'm going to make an effort to make time for this!
4. Project Life! This ties in to #3, but it's a commitment, and I'm jumping on board.....1 week at a time!
5. Be more patient
6. Plan more experiences with the kiddos.....no matter how daunting the prospect of getting out there to do it seems.
7. GIVE UP SODA....AGAIN!
8. Get rid of CRAP!
9. Drop some FAT!
10. Run a 5K in the next 6 months!

So, that's where it starts. Those are things that I want to do for me! There are other things I want to work on, but those will stay in my pocket for right now....


What's a post without photos of my sweet littles? There will be a catch up post coming up tomorrow, but for now, here is Little J who just turned 8, Princess J who is 5, and Peanut J (Also now affectionately called Honey Badger) who is 3!



Little J



Peanut J and Princess J

Finally! Bringing back the Blog!

Honestly.....I've missed you! I can't believe it's been over 6 months since I've posted on this blog! I am sure that no one is coming by anymore...and maybe no one even misses it? Things got crazy busy for us the end of last year. Our biggest undertaking was Little J's heel cord and hamstring lengthening surgery. Most of you know that Little J took quite awhile to begin walking. Once he began walking he became a toe walker. This kid could navigate the most trecherous terrain on his toes! The only problem with that is that as he got older, his feet would likely become deformed and eventually it would be so painful that he would not be able to walk at all.

This photo was taken in September after his second set of casts were placed.

This surgery was our only option to give him the best opportunity for successful walking for a long time to come. It was a huge undertaking and still 6 months later it's still a work in progress. I knew it was going to be a lot of work going in, but it was far more than I imagined.

Little J went into the hospital in mid-August for his outpatient surgery. They did a small nick in his achilles tendon and hamstring and casted him up. Poor little J woke up from sleep with these two huge casts that went from his toes to his knees. Initially coming out of anesthesia he was doing well. The more he woke, the more distressed he became. This poor little boy was wailing like I've never heard before. At first, we thought it was the strange environment and the other kids crying in the recovery room, so we opted to take him home. Our poor sweet boy wailed from the time we left the hospital at 10:30 in the morning until 5pm! We were entertaining the thought of taking him back to the hospital, but after discussing it with the nurse and the thought of having to wait in admissions for a bed with this wailing child, we decided to try a few more things at home and if necessary we would have taken him to the emergency room. We just didn't know if he was in pain, if it was a side effect of the anesthesia, or just the confinement in the casts. Typically, this surgery is not known to be painful, but when you're talking about a child with Angelman Syndrome, you just never know. Thankfully, he was finally able to get some much needed rest and he adjusted to the casts.

The things you don't think of as being work are probably the most difficult. Carrying around your 7 year old is no easy task....it wasn't my biggest concern in the surgery until I had to do it. Just the day to day care was physically daunting for us. Little J went to physical therapy twice a week and worked really hard at walking in the casts with assistance, and building the muscles that he had never used before.

After 3 weeks, they took Little J back in to remove his casts, make some adjustments, cast him for his post surgical braces and replace the casts. Thankfully, this time he came home in a much better mood.

After another 3 weeks, Little J finally got his casts off for good! Now the really hard work began! Since he was walking on his toes, there are a lot of muscles including the ones in his ankles that had never built up, since they were not being utilized. His braces were fitted and after numerous adjustments including one to stop it from causing a large painful gash on his leg. He was going to physical therapy twice a week and working really hard at relearning to walk and just building his muscle strength. His school staff met with his physical therapist and worked really hard with him on exercises through out his school day to help him even more.

Four weeks after his casts came off, we saw his orthopedic surgeon who was quite impressed with his progress. He is walking independently and mostly flat footed.

Fast forward to 6 months post surgical. Little J is doing really well. He still a bit weak in some of his muscles. He can walk independently while wearing his braces. When not wearing his braces he requires almost 100% support. We recently saw his rehabillitation doctor, and we're switching his braces now. Hopefully, the new ones will be more comfortable for him and help him with his progress. He's still doing physical therapy once a week plus all of his excercises and strengthening at school. This kid is working so hard! There is a possibility that we may do some botox treatment on one of his hamstrings as it's still a bit tight. We'll be meeting with his orthopedic surgeon and rehabilitation doctor in May to see which direction they want to go. Overall, Little J is doing amazing! He has been such a trooper going through all of this. He gets up everyday with a smile on his face and works like a rockstar at school and at his therapy sessions

This really was the bulk of our end of the year craziness. If you read this far, thanks for being interested in what we've been up to. I have so much more to update you on. There is our diva Princess J, our goofball Peanut J and their adventures along with a lot more on Little J as well as new and exciting news in research for Angelman Syndrome. I have a few rants and shares coming up too if you're interested!

Surf's Up Dude!

On Sunday June 19th, Little J got to participate in Max's Day with Ride A Wave in Santa Cruz.

I cannot express in words just how amazing this day was for Little J. This is his second year participating, and this year was just as fabulous as last year. Little J got to kayak and boogie board, he also got to surf.....STANDING UP! Last year they put him on a special surf board equiped with a seat, but this year they got him up on that board standing tall! Anytime he was in the water, his face was just a big bright smile and lots of giggling! The added bonus to this day was that several of Little J's classmates and fellow angels participated as well!

The people who put this event together and all of the wonderful volunteers really are beyond amazing! Little J was assigned 2 beach buddies, these two young men chatted with him, got him from one activity to the next and took him back to his favorite boogie boarding at least 15 times! It is just so amazing to see your child do things that you never in your wildest dreams imagined they could do much less would get the opportunity to do.....this organization and all of the volunteers out there made it happen! My heart is full......

Did you see the Vivnet Give Back Project link on my sidebar? Please take a moment to click on the link and vote for Foundation for Angelman Syndrome Theraputics to win! Angelman Syndrome has been cured in a mouse.... a few clicks of your mouse could bring us one step closer to the cure for Angelman Syndrome in people!