Thursday, December 29, 2011

Maya is 4 years old!



Happy 4th Birthday, our sweet and precious Maya!

For your big day, we went to your favorite restaurant Pappasitos where you go to eat your favorite chicken enchiladas with verde sauce, and yes, we even let you have queso. You did NOT, however, enjoy the sombrero and the thought of even looking at that dessert in front of you made you "angry".
In the evening, we celebrated with the whole family and lots of friends at your favorite place - ITZ. We've hit that place for every one of your birthdays so far. You enjoyed going on the Monkey ride, the train, and the roller coaster.





You loved your Disney princess 3-D cake, but you didn't even taste a little bite!

You loved your presents (of course!)


You thanked everyone for coming...


Madi had a sleepover with you and you practiced putting makeup on your new dolls! Mommy and Daddy also surprised you with your most wished for present since Christmas (yea, that whole 4 days!) - A Dora Kitchen!

Great times!!!! We love you, Maya. Happy 4th!!

All the pictures are here

Wednesday, December 28, 2011

Maya's 3rd year in review

I think every year I say it was the best year, but 3 was definitely my favorite so far. We are looking forward to another adventurous year with our big girl!

Maya, we had such an exciting year with you. Some highlights - Being the best big sister by sharing your playtime, toys, movies and food with Kaden, 1st trip to Disney World, playing with your very own iPad, experimenting with preschool, horse riding/therapy, getting potty trained, getting into make up and doing nails, taking pictures on mommy's cameras, dancing, cooking with mommy, going on rhino rides at the deer lease, the biggest year yet we've seen from the drama queen. You started talking SO MUCH. And singing all day long. To every song in the whole wide world (I am repeating what I hear her saying). Your favorite color is RED.

You mastered driving your first powerchair in about 6 months. We didn't get the lift for our car until you had the chair for about 4-5 months, so once you were going out and about to restaurants, ball parks, and shopping places, you just got better and better at maneauvering everywhere. You can get through some amazing spaces, you learned how to go up and down, you even gave some rides out (I think Hailey was your first passenger at a Sam's Club!). You love your powerchair so much and feel so independent with it! You don't get upset when we don't bring it in the house because you like using your manual chair in the there, but everytime we go out, you are so excited to be able drive on your own. I bet you also love hearing us tell you to "come back here, Maya!" or "Maya don't go too far". Every time you went down a ramp, everyone had to stop and chant for you, "Go, Maya, Go! Go, Maya, Go!" Every.Time. Looking back on it, I don't know why we didn't get it for you earlier. I think your ability to "run around" really opened up a big part of your personality. We are so happy that you are so happy in your powerchair.

Maya, you had the busiest schedule of any 3 yr-old I ever knew. Mondays you would go to PT, Tuesday mornings to horse riding, then back for OT at home and then home school. Wednesdays you would go to preschool, Thursdays you would go to PT in the morning, then home for OT and then home school. Fridays you would go to preschool. The only thing that changed when you turned 4 is the preschool thing, but you will be right back next August! Somewhere in all that, you would fit in some swimming here in there, doing about 3 hours of standing time per day, and taking naps.

Your favorite activities and toys when you were 3 were: painting, cutting things with your cool scissors, getting your nails done with mommy, doing everyone's nails at home, putting on gobs and gobs of lip gloss (doing your makeup next to me in the bathroom!), watching movies like Tangled, Little Mermaid and Cindereilla. You loved books (finally) this year and asked to be read every night. Your favorite books were Cinderella and Little Mermaid. You love driving a play Escalade car around the neighborhood and scored your very own for your 4th birthday. Playing teacup/coffee and kitchen, the doctor set, cash registers, castles and houses, playdoh, all princesses and Barbie things, and you very much enjoyed playing with all your old baby toys that we brought out for Kaden! You got your first baseball bat and loved playing baseball outside in your stander. We got a swing set in our backyard after seeing how much you love to swing. But, you also hate bugs SO much that you hardly wanted to go in our backyard after 5 pm!

Your eating habits got a little bit better. I don't recall having to make quesadillas three times a week! You still love Spinach. The only other green vegetables you will eat are broccoli (with cheese) and okra (fried). You would eat lasagna and taco salad (with all the lettuce, too!). You tried more and more vegetables and different meats, vbut you were still very much against eating any kind of fruit (except Gerber Pears), ice cream, or candy. You would tell everyone that asked you to eat any of these "banned" foods of yours that you did not like them, but thanked them for offering.

During your 3rd year of life, you proved just how brave you are. We would go to the doctor, therapist, get new bracing, etc and you don't cry anymore! Now, you still cry alot when there is a needle involved, but you are getting SO much better at it. In fact, you cry right before, but during the finger pokes and bloodtests, you are such a big girl and hardly ever cry anymore! And there were so many more ways that you have proved your bravity. We are so proud of you, Maya, for many reasons, but for putting up with all the "stuff" we have to do with you is amazing.

Monday, December 5, 2011

Guess who took 2 steps today!

I have waited a long time to be able to say this about one of my children. Kaden took TWO independent steps today!! Kaden was playing with his new riding toy and watching some DVD. He was holding on to the lazyboy and wanted to go to his toy. He took two steps to the handle of the toy. Then he stood there a bit and then fell down. He didn't do it again the rest of the day, but now I know what it feels like to watch it happen. I am SO happy I was able to be there when he did it. Go Kaden!!


As a sidenote. With all the happiness and wanting to celebrate, there is always that part of Charlie and I that want to watch what we say around Maya. I didn't jump up and down and get all excited in front of her because you don't want her to think I'm not proud of her. We knew this time would be hard for her  - to watch her brother and younger cousins start walking and running and climbing on things. She was the youngest on this side of the fam until last year. She's been "trying" to crawl lately and she will put her hands on the floor and move her head in a go-forward motion and then tell me she is going to crawl one day. It just breaks my heart. All I tell her is that we hope she does one day and that we will do everything we can to help her try to get strong enough. I don't remember if I posted about some of her conversations, but she prays about being able to walk. She asks me, "You know Mommy, I pray to Jesus that I am going to walk one day, you know that Mommy?" Another heartbreaking conversation that we seem to have almost two to three times a week now. I just have to tell her that we will continue to pray that she will get really strong and be able to one day, BUT that if she can't its okay and we all love her so much and how cool her powerchair is and all sorts of other wonderful ways she can be happy. So we find a happy medium to keeping the faith/hope but also letting her now that if it doesn't happen, we will take care of her and keep her happy just the same. Its that fine line between religion and science and she is just too young to get it. Heck, I am still struggling myself!


I know that everyone reading this must think, wow, that was a happy start and a depressing end to a blog post. Well, just a taste of what our days have been like lately. Its been a tough six months watching Kaden move around and have Maya asking questions. Its emotionally draining. The excitement over him and the sadness over her. But on a lighter note, Christmas is coming up soon and we have some very special toys planned. One may be delivered this weekend and configured just for Maya to be able to use!! I am expecting some big smiles from that blue-eyed sweetie!

Saturday, December 3, 2011

Kaden's 1st Birthday Party - Little Gym


Kaden's 1st birthday party was a big hit! We celebrated at the Little Gym where they do the entire party for you! We knew that Kaden would have such a great time there as well as his 3 closest cousins in age. We didn't realize that the entire group would end up having such a ball. View all the pictures here.


He thoroughly enjoyed his cake.


Opening presents with cousin Addi to assist!


 Having a ball at his party! 








 The whole gang had fun!


 The decor





Friday, December 2, 2011

Look Mom!

So Kaden is only 1 week into being a 1 year old and he just has toshow us doesnt he? In the past 7 days, he has started to climb and climb and climb! He now knows how to climb into Mayas wheelchair. And he has to show us up by standing on the seat. And now he even wants to stand on the back of it which would make him bust his you know what. Then he has figured out that if he moves his toys and toy boxes that he can climb on the sofa. That one is fun. The gross one is the liking to play with the toilet water. Ewwwwwww! And finally the real shocker this week. I was at Gaylas house talking to her about whatever that day and went to see Kaden. He was gone from the living room! I thought I had heard some noises. I looked in the bathroom (see toilet above). No. Ran up the stairs. Little stinker made it all the way up the stair case and was sitting by their pool table. So scary because they have a second stair case and stairs all over the place upstairs. He had the biggest smile on his face when I saw him.  UPDATE: He has now done this to me two more times in our own house. I've run around frantically looking for him. Its my OWN fault that I leave the gate to the stairs open. I have to be more careful! I even put a sign on the gate to close it (since we always have so many visitors in the house) and I cannot obey my own sign!! He is SO PROUD of himself when he does this. Such an accomplishment.

Wednesday, November 23, 2011

HAPPY 1st BIRTHDAY, KADEN NEAL!!


The year has flown by and our baby boy is one already! Still a sweetie but getting every bit mischievous like little boys are. Kaden loves his big sister Maya, loves to play ball and rough house with his daddy, but is most attached to his mommy as he often bumps into things this age and has to cry to someone!
On his big day, we were at the family deer lease in west Texas. Poor Kaden has a stomach virus so he’s been miserable and couldn’t eat all the foods he enjoys so much. He started his day to a blow up (diaper) and had a 6 am bath. We went on a joyride on the deer lease with the girls where he and his cuz Addi took a long morning nap. For lunch we headed to town at this place called Jacoby’s. We eat there everytime we go to the deer lease because it’s the closest restaurant, gas stations and feed station. We sang Happy Birthday to K and let him smash up a cupcake. Maya blew out his candle for him. We got him this shirt that had a deer on it with camo and a “1”. An appropriate shirt for his birthday trip. He was likely to put his hand on it, so just playing it safe! The outing got the kids tried again, so we did a family nap, while Charlie had an evening hunting trip. Kaden’s big bash is on December 3rd and he’ll be able to smash up another cake and show his skills. 


Stats (12/9/11): Weight 23.75 lbs (60%) and Height 31.75 in (92%)
Walking update…Kaden is SO close to walking, but not just yet. He walks along everything and manages to get into everything. He will stand on his own for a long time, but just won’t make that move on that first step. Instead he crawls about 10 MPH! Very fast. He has one of those push toys that he walks behind all around the house, in circles.  He has learned to climb up the stairs and is trying to learn how to get back down. He doesn’t quite have it down yet. Instead of crawling backwards, he would rather go head first, causing him a bit of a dilemma (which is obvious because he pauses for a moment to plan things out J). 
Playtime...I find myself telling people that he is “such a boy”.
-          He loves throwing the balls around the house and chasing them.
-          He enjoys anything car and will seek out the toys that have cars.
-          There is this red baseball bat that he just plays with forever everyday while he watches some cartoon and chews on the end of it.
-           He wants to open every cabinet and drawer in the house. We left a couple non-babyproofed in the kitchen and he has definitely found them! One is the Tupperware drawer and sometimes I will find Tupperware all over the place. The other is the ziplock and wrap drawer. He likes to take out all the ziplock bags out of the box and put them on the kitchen floor.
-          I have this towel bar at the kitchen sink. He treats it like a bell he has to ring everytime he sees it. You know he’s been in the kitchen because the towel is always on the floor. As soon as I put it back up, he will usually come crawling back to take it down again. It’s still cute, but getting old soon enough!
-          Whenever we have the dishwasher down, K wants to take all the dishes out and put them on the floor. His favorite item – the plastic straws.
-          Kaden loves taking baths and enjoys playing with water. He can hear water from across the house and will come “run” crawling. When Maya is taking a bath, he will go to her and stand up at her bath until she is done. He tries putting toys in and out for her. Recently he’s even tried to take off his own shirt. Sometimes it’s tough watching, so I just let him jump in with her and have a bit of fun. He gets SO excited when I do this because he also likes playing with Maya and splashing the water everywhere. He does not like the Jacuzzi bubbles however. I’ve never seen him crawl up on me so fast the first time we put them on for him! 
-          There is this dog that plays music (I think it works with iPods or something). Every now and again, we will hear the dog playing music and it is apparent that Kaden is in the playroom!
-          He really enjoys unplugging things and tries to chew on the outlet, which of course is a danger so this keeps us quite busy as we chase him around the house and taking things like this out of his mouth and hands. The monitor and cell phone charger near my nightstand are his most favorite. If I ever lose him, I typically know that he will be in my bedroom playing with the monitor base.
-          K has discovered the toilet and toilet paper! We have to watch the cover now and make sure it is down otherwise you may have a surprise. And he loves unraveling the toilet paper similar to any other kid out there. I have also discovered what it is like to never have privacy, including when I go to the bathroom!! My goodness – he will always find me!
-          This weekend we found out that he loves to push a broom. Kept him entertained for about 45 min. Go figure.
-          As far as toys, he has enjoyed playing with the play
Sleep habits...wakes up around 7, has a morning nap around 10 and sometimes an afternoon nap but the time depends on what the day has to offer. No set schedule for the second nap. He is finally sleeping through the night. I am too tired to remember when he started it and honestly just don’t want to jinx anything.   
Food…This is Kaden’s favorite part of his day. He loves to eat!! He is completely done nursing and takes formula. He will begin milk soon. It was delayed a bit due to illness and all this traveling! He still takes 5-6 formula feedings, mixed in with food. He loves eating on his own, so we’ve had to make adjustments to dinner and eating out to accommodate finger foods for him. In fact, he sometimes takes the spoon out of my hand when I’m not paying attention while feeding him! He loves bananas, blueberries, cantaloupe (although banned in the house now due to the contamination outbreak L), mandarin oranges, and those mixed fruit cups. He still eats oatmeal with gerber fruit in the morning. I am introducing eggs to him since Maya eats one every day and it will be pretty easy to add one more to the daily routine. He loves his vegetables. He loves green peas and corn, He will seek out these two things out of the green beans and carrots from the mixed veggie medley. He loves pasta and mac and cheese. I loved it one day when he and Maya just ate and ate my lasagna one night. It was a huge hit! There isn’t much K doesn’t like to eat. This is a big part of his day and he is so happy afterwards. For snacks, we still give him the occasional Mum or puffs and now we are getting into goldfish. The ONLY food Kaden does not seem too fond of is potatoes. I have never seen him eat an entire helping of mashed potatoes and even sweet potatoes. All this vegetable eating by Kaden seems to be rubbing off on Maya because we are getting her to eat things she would never thought imaginable to her like broccoli, corn and sweet potatoes. Hopefully his palate will remain as big as it is now and continue to rub off on Maya. I enjoy cooking when everyone eats it!
Tooth update…K has one “toothy” as Maya likes to say. He got it at 11 months. Maya was 14 months before she got one so both kids are very late teethers. I see the other bottom one coming in soon and maybe one of the top front ones coming. It hasn’t stopped him too much on eating even though I like to think it would.
Sibling rivalry…Kaden and Maya love each other and love being around each other, but its gotten to that time where K is making his mark. Every morning while we are getting Maya ready, he will go to her room. They are both so happy to see each other. Its so cute. K will make his typical rounds – the cough machine, open and closing her drawers, into the bathroom where he always tries to get her crayons and stick his hand in her toilet (gross!). He loves playing with Maya’s ankle and knee braces and getting her water cup from her nightstand. In the playroom, he will surely knock over all her toys she is playing with. Obviously this becomes a greater issue to Maya since she cannot defend herself nor pick them back up. So this will be more of a challenge as K moved through this stage (another 18 months probably!). Maya has handled everything pretty well though. She will tell me that Kaden is going to knock her over or her toys over, but she doesn’t seem so bothered about it where she is crying or complaining over and over which is a good thing. Maya is SO particular about her toys and until Kaden was moving, all the parts of her toys stayed with that toy. Now they are all over the house. Fun stuff.  Kaden is busy tagging along to all his sister’s appointments every week. He often misses his morning nap to come along but he is a good trooper for sitting in the car and being woken up abruptly. They also have a love hate relationship starting in the car. Maya will grab his hand and entertain him when he is crying. But Kaden, he doesn’t know any better yet, will throw his sippy cup and accidentally hit her in the head, or he will get her water cup and start drinking from it, or he will steal her snack bag and throw it everywhere. He is just at that age, but Maya adjusts pretty well to it.
It has been a fun but challenging year for Charlie and I. Kaden was a much needed addition to the family. Its allowed us to focus less on being an SMA family. The bad part to that is that I find myself less on top of things with Maya. Kaden is a lot of fun and it is a joy to watch him grow up and reach the milestones that we did not get to see as first time parents. In that regard, we are first time parents in a lot of ways with Kaden. Baby proofing the house, for example, was all new to us. So the year brought many joys, but also sadness as we watch Maya watching him. He loves her so much you can tell and she does to him, so these feelings should grow with the children and they will become so close. I can see K becoming protective over his sister and Charlie and I would be delighted to have one more person in the house to watch over our other blessing! The next year will continue to be a lot of fun as we watch Kaden start to walk and run and climb on everything. My back will also be happy that I will have one less child to carry and pick up! And finally, Kaden will finally be able to get a ride on his sister’s powerchair!
Kaden, we love you SO much and have had a lot of fun watching you over the past year. You were a very good and patient baby and becoming an ever so busy toddler!  You hardly cried until the age of around 9 months when you started to crawl and we begin locking you out of things! But you weeped only a few minutes and then back to your big and beautiful smile. We still haven’t made out your eye color. I recently called it camo color or dark hazel. You appear to be a cuddler like your sister, but you are also wanting to be so independent that you can’t sit still anymore! By the end of next year I can see all four of us having a family nap like we did when you were just a little baby!

Saturday, October 8, 2011

July, August and September Pictures Posted!

See our link to the right and see what we've been up to. Maybe I'll get to post again soon!

Wednesday, August 31, 2011

Kaden's 9 month stats















Weight 21.2 lbs (59%) and Height 30.25 in (94%)

Friday, July 22, 2011

Happy 8 months, Kaden!

Happy 8 months Kaden!

-We still cannot quite make out Kaden's eye color. Some say light brown, sometimes hazel, and sometimes gray. His hair is getting lighter and lighter every month.
-He weighs 20 lbs already. OMG!! Maya wasn't 20 lbs until she was about 13 or 14 months old. WOW. And he is very tall. I'm looking forward to next month when we get the stats again.
-I was looking at Maya's 1 year pictures and it is amazing that brother and sister look so much alike. They don't look that similar right now, but you wouldn't know which baby you were looking at in the baby pictures.
- Kaden is a loving little fellow. Big kisses to all that will take them. It is so special to see Maya and Kaden around each other. You can see so much love between those two. Just wait...the stealing of the toys is coming, Maya!
- Remarkably quiet in the morning hours. So much that you can just put him on the floor and he will play with his toys for almost an hour, no peep.
- In the evenings close to bedtime, is when we hear all the talking.
- When he wants something, usually something to chew on, he gets mad and grunts. And he gets really mad when you take it away.
- Says "agu" and "dadi" and alas, "dada". The dada were a little sketchy a few days ago, but on his 8 month birthday, he was all about "dada" all day and evening and won his daddy's heart.
- He only sleeps in his crib now. At 6 months, we started taking him up the crib, but I brought him down to the play pen/bed around midnight when I went to bed and he was hungry. Then at 7 months, all naps were up there in the crib and I didn't bring him down until the wee hours of the morning like 3 am. This past month, he only sleeps in his crib and the play pen is now just a diaper holder. He does still wake up in the middle of the night. Not his fault - totally my doing. I need to start the sleep training, but when is it ever a good week to say "okay, this week I am going to go without any sleep". Maybe this month?
- More on sleeping. I try putting him down while he is awake now and let him fall asleep. What happens most of the time is that he cries, gets me to turn around and pat his back and then I sit in the glider and just say nice words when he thinks I am leaving. And then I ALWAYS fall asleep and then he eventually does too. Quite similar to me putting Maya to sleep. She asks me to lay down with her and I am asleep in 5 minutes and she is still awake after 20!
- He moves around alot when he sleeps. Often I place him one way and he his head is on the other side when I come get him.
- I LOVE the big smile he gives when you come and get him from a nap or in the morning. He claps and is just so happy to see you. And he is strong that he helps you pick him up by pushing himself to standing.
-Kaden looks like he is starting to pull up a bit on his own. I give it another 2-3 weeks before he can pull up so we lowered his mattress last weekend. I can totally see this kid doing a Sanjay. Sanjay layered his blankets and toys in his crib and used them as a ladder to get out of his crib. My brother had to lock him in his room so he wouldn't get out in the middle of the night! And then there's Kavi, my brother's youngest. He likes to escape from hotel rooms in the middle of the night. Interesting.
- Kaden loves slapping the tile. He will make himself fall over and then rolls his way off the carpet just to get there. And then just slaps the tile over and over. Everytime I see him doing this I think "what a boy"
- We are in the stage where EVERYTHING goes to his mouth. Ridiculous really. Maya didn't do this. She somehow knew what was food and what wasn't. Sure she would chomp on some teething toys, but she didn't pick up my shoes ever and try to chew on them, nor did she put the remote control in her mouth. This part is going to be tough because of all the little things Maya plays with. I swear that if I see another one of Maya's hair rubber bands on the floor, I'm gonna go crazy. I guess Charlie and I are the only ones who see the danger in this?
-This month Kaden took antibiotics for the first time. He got really congested after Disney and Gayla took him to Dr. B to see what was going on. Undiagnosed but did put him on amoxocillin just based on length of symptoms. Poor baby had a reaction to it and it caused severe diaper rash. Then came a week of no wipes, all sorts of diaper rash creams and ointments, explosions daily and sheet changes, gave him probiotics, and a whole diet change of just oatmeal, bananas and mommy's milk. Poor guy! He couldn't sleep cause his tummy hurt so bad. Finally went back to the doc and he gave us another antibiotic. He's all better now.
- Foods. This month we have thrown all the foods in, including pastas and chicken. I made this chicken, pasta, veggie combo and he just loves it. We also made some mashed potatoes, green beans and corn to add to the list of options he has everyday.
- He started Yo Baby yogurt and puffs for the first time on his 8th month birthday. I loved watching the puffs! He would pick them up and try to put them in his mouth. I left for a second and came back to find that they were all in the palm of his hand - none got in his mouth. Took some video of all this but find it hard to get video on the blog lately.
- Kaden does not have any teeth yet so I am holding off on a few foods. I know his gums can probably handle more, but its that fear of them choking I guess. Maya was a really late teether, 14 months, so maybe Kaden will take after his sister.

I'm sure I am forgetting some things here and there because this was a big month for Kaden. He moves so much and I am going to see that keeping up with him in a couple months will be a task! I am so glad to be given the opportunity to start working at home so that I can see my little boy grow!

Friday, July 1, 2011

Disney World and FSMA Conference

Great vacation and great memories made on the kid's first trip to Disney World. We are excited about how accessible Disney is for people in chairs. Maya can truly have a wonderful time there and not worry about getting on rides. We can’t wait to go back in a few years! The FSMA Conference flew by this year, but we still enjoyed being around other SMA families.

Here's what we did....

Day 1: Wednesday, June 22nd – The Drive

Drive to Orlando. Nani and Papa drove with us and Maya sat in their car. Kaden stayed with Gigi and Papaw and flew with them Thursday. It rained pretty much the entire way to Tallahassee but we finally made it there around 11. Maya had her bouts of asking repeatedly if we were there yet and I literally spent the entire drive planning out our days at the parks and which rides to ride. That a way to spend 12 hours!

Day 2: Thursday, June 23rd – FSMA Conference starts

We finished the drive to Orlando and arrived at the hotel (The Swan) around 1. Charlie left to get his parents and Kaden from the airport and the rest of us stayed back and just unpacked, rested, etc. We walked around the hotel area and saw the pool (the first and last trip to the pool actually).

The FSMA Conference Meet n Greet was that evening and Maya had so much fun in her powerchair this year. It was a carnival like scene with pizza, popcorn, cotton candy, nachos, and ice cream. They had Mickey ears and balloons everywhere. A real treat for everyone! The Disney characters were there also but Maya wanted nothing to do with any of them. In fact, when she saw Mickey, she started crying hysterically and wouldn't let me even stay in the ballroom with her. We had to leave the room entirely before she calmed down. Maya loved the bubble blower table the best. Kaden got some cotton candy from Papaw. This year Maya even participated in the relay race. It was good to see some of the friends we have made and Charlie and I were able to hang out with some friends that evening.





Day 3: Friday, June 24th – FSMA Conference and Epcot

At this year’s conference we sent Maya to the Kids room. We were able to find a buddy or two to stay with her. There were two rooms – a toy room and a craft room. Maya spent most of her time in the craft room as this is what she loves to do the most. We put Kaden in the baby room and he did great as usual. We always get comments on how good a baby he is. After the usual sessions, we grabbed some lunch on the Boardwalk with our friend Angela. Some more classes and then off to Epcot.

We took Maya’s powerchair to Epcot, but it was the last day we would do that. She would either a) stop at every single corner to look around, 2) not drive because she was scared, or 3) drive so fast that we couldn’t keep up with her. It was way too crowded to deal with a 3-year old in a powerchair anyway. She was so scared of EVERYTHING that first day. We managed to get to one ride at the Land of the Living and see the Finding Nemo show. And then it started to pour down rain and we were literally stuck in a café the rest of the evening. We never made it to the FSMA Dessert Party and the fireworks. Instead, we were teaming up to find the best rain gear. Not the greatest way to start our Disney adventure! Unfortunately, the forecast wasn’t looking good for the next few days.





Day 4: Saturday, June 25th – FSMA Conference and Magic Kingdom

More crafts for Maya and sessions for the rest of us at the conference. We knew it was going to rain again, so we decided to skip out on the afternoon sessions at the conference (we were at Disney World after all!) and head straight to Magic Kingdom.

Another park, another scared little Maya. This time we took her in the stroller. Much better option! It started raining as soon as we got off the Monorail. I think we stayed under the entrance for about an hour before getting enough guts to head into the park. So goes all the pictures with the ponchos! First ride, Peter Pan. She was scared and needed someone to hold her the entire time. No smiles this round. 2nd ride was the carousel – something Maya wanted to do because in no way shape or form did she want to ride Dumbo (because it was an elephant). We somehow convinced her that there was a “bumpy” car ride like at ITZ and she was excited. We didn’t tell her it was Dumbo until about half way through the ride. She LOVED it. Then she continued to tell us how much she loved Dumbo and he didn’t scare her. Made it to the Pooh ride before heading to Maya’s princess appointment. All the while, it rained off and on. Kaden was just watching it all and laughing, smiling, eating, sleeping. Just being a great baby.





The boys headed out for some rides while the ladies and Kaden went to Cinderella’s castle to visit Maya’s fairy godmother. She was treated to a princess hairdo, makeup and nails. The fairy godmother let Maya choose her hair style and all the makeup colors. She actually chose the punk hair at first, but then we were able to talk her into the much more classic bun. She loved it and so did I. It was the highlight for me to do this with her. After her appointment, everyone in the park greets her as “princess”. She loved it too. Nani and Papa got her a big Cinderella castle to take home that day.




Maya started having more and more fun as the day went on. We were able to get Maya a guest assistance card and we were allowed to go through the alternate entrance for each ride. It’s not intended to let you skip ahead but that is exactly what they let us do. Sure, we felt bad about skipping the lines, but really, if this is what we “get” to do for all that Maya has to go through on a daily basis, it doesn’t make you feel so bad anymore. Most of the rides we had to transfer her into the ride, but there were a couple here and there that she could stay in her stroller.

We decided to skip the parade and fireworks at Magic Kingdom that evening and headed to Downtown Disney to eat at TRex. I think it was 10 pm by the time we sat down! Maya stayed at the entrance with Charlie for quite sometime contemplating whether she would go in to the restaurant. It didn’t help that there was giant TRex in front of her! She found an octopus that she liked and it calmed her down, but she would not sit in her chair the entire night and had to sit on someone’s lap. It was a neat place – similar to Rainforest Cafe.

Day 5: Sunday, June 26th – FSMA Conference and Hollywood Studios

The last day of the conference usually has a summary of the research meeting. Pretty informative meeting for highlights on the progress of developing treatments. It’s amazing how many people are taking a part of making these treatments. It’s frustrating for the families, but I can see similar frustrations in the eyes of the doctors and researchers who work on SMA treatments every day. So here’s the update: Not much going on in stem cell world. Not good to hear. Gene therapy is pretty far away and will likely not help Maya ever stand or walk. There are some promising drugs out there going to trials soon that should stop or slow down the progression of the disease. Now I know why so many families skip this meeting. Its great at first, but year after year, to hear that your kid “may” stabilize but it is likely that they will never get better is a tough message to hear over and over. As Maya gets further and further away from the initial diagnosis, it will become that much harder for any of these drugs to help her. WE WILL NEVER LOSE HOPE. We continue to pray for a cure, a better life for her – rather a more adaptive and accessible life. Until then, we enjoy every minute we have with her. We are continued to be amazed by women with SMA who get married and have kids. At the same time, we try not to get too ahead of ourselves. Let’s just tackle potty training at this point and getting Maya into the right school.

Switching gears – back to the fun part.

Maya had to say bye to Nani and Papa and she just cried to see them leave. Nani did some “I feel guilty” souvenir shopping for Maya and let her buy whatever she wanted. I think Maya ended up wit a Disney juice cup, some pretzels and a Goofy golf club cover that she thought was a puppet.

We headed to Hollywood Studios for a few hours. We had a few rain showers that morning, but actually made it to this park with no rain. The only day at a park with no rain! Charlie and I rode Aerosmith, the g-parents were too scared to go to Tower of Terror. We watched the Little Mermaid show and this was Maya’s favorite show. Or at least top 2. Headed over to Toy Story which she LOVED and so did all of us. One of the best rides/attractions at Disney. We tried to make it to the Muppet Show or anything else, but Maya wanted to ride Toy Story again. Some of the lines were pretty long so we didn’t get to do much before having to leave the park for our dinner show. We said we would head back to HS another day, but never did make it back there. However, this was the ONLY picture we got with Mickey – a picture with a picture of Mickey. She wouldn’t dare have a pic with a live character!



Tonight we had reservations at the very popular Hoop Dee Doo dinner show. One of the best nights we had complete with dinner, drinks, a show, and fireworks. Maya had so much fun “running” around in her chair. Her hair was still princess style so she got all sorts of comments all day and night. She was going around on her chair singing “It’s a beautiful day”. She could care less about the fireworks!





Day 6: Monday, June 27th – Animal Kingdom

Another late night meant another late morning. We finally got to the park around noon just in time for another rain shower and afterwards a very humid day. We saw just about everything at Animal Kingdom despite the huge crowds. We began with a show – the Lion King. Maya was so frightened and had to sit in someone’s lap again! I caught her waving every now and again to the big fake lion that was behind us. We had front row seats and just about every 5 minutes someone was trying to “entertain” her but she wouldn’t flinch. Just plain scared.

After a short shopping trip for musical souvenirs from the Lion King show, we went on the Kilimanjaro Safari ride through a real safari, a few picture stops with the Tree of Life behind us and then watched the parade. Went for a stroll in the Maharaja Jungle Trek. While the kids slept, Charlie and I rode Kali River Rapids, where I got soaked and then we rode Everest twice. Great rollercoaster there. After Maya woke up we went to see a show – Finding Nemo which was pretty neat and she really liked it. Then onto Tricera Tops which is like Dumbo, but clearly not the same because she wasn’t nearly as excited. The adults took a last ride on Dinosaur before closing down the park.



We had dinner at O’Hana that night which is kind of like a Fogo de Chao on a much smaller scale. Unlimited food two nights in a row. We took a lot of pictures at the Polynesian hotel where the restaurant was and decided we wanted to stay there on the next Disney trip!

Day 7: Tuesday, June 28th – Magic Kingdom

We decided to switch our free day from today to Wednesday and it was a great decision because it only rained intermittently Tuesday. Still had to break out the ponchos. The rain left us all very hot and humid. This was our full day at MK so we went to all the rides and shows pretty much – Aladdin, Jungle Cruise, Pirates of the Caribbean was a favorite of the whole bunch. Then I talked Gayla into riding Splash Mountain with Bill and I. She got wet and then swore to never ride another wet ride again cause of her hair! LOL! Charlie and I rode Big Thunder before we all headed to Haunted Mansion (Maya was surprisingly not scared here). Went back to Fantasyland for a must ride no It’s a Small World. Maya had great big eyes on this one – “like a dollhouse” she kept on saying! She kept telling me “oh look look, mommy…look look” Very cute. After this point it pretty much rained for the next 3 hours. We made it to Tomorrowland and rode Space Mountain while kids slept. I took Maya on the speedway to drive her own car and then we finished it out with Buzz Lightyear and Astro Orbiter. Whew! Rode it all, missed a few shows.


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Parade time was here and this was another of Maya’s favorites! It was the electric parade. We got her a “lighter” as Maya now calls it since this is the standard parade toy to have and she picked the Minnie Mouse one – my favorite as well. And Kaden’s. Maya insisted on riding Dumbo one more time so the boys took her while we found a place for dinner – at 10 PM! On the way, the light show on the Cinderella castle started and we all stopped to watch – what a GREAT show. How neat. Then the fireworks started. When Maya returned she couldn’t stop talking about the parade. So we found ourselves at the 11 PM parade! Front seats this time.



Kaden enjoyed it all. Never fussed except to eat or sleep. Well, he did hate the poncho covering his stroller and my nursing cover which actually made it a bit difficult to walk in the rain with him or feed him, but still he was the best baby.

Busy 12 hour day at the park…and a 1 am bedtime….

Day 8: Wednesday, June 29th – Free Day….Ice Cream buffet!

I think we all slept in til 10! We were going to go to the pool, but surprise, it was raining. No pool entire trip. So much for all the swimsuit shopping I did for everyone! We got ready and headed “off campus” to lunch near my cousin Sonal’s house. It was like tornadic weather all day. Good day to skip the park, but also our last day there so we were a little bummed. Sonal invited us to her Marble Slab store where we were all treated to whatever kind of ice cream creation we wanted. Maya didn’t want any of course and just ate some almonds! Kaden tried some ice cream as well….



Since it was raining, we decided to head back to Downtown Disney and skip the park today. I dropped the guys off at Disney Quest and Gayla at the shops and I stayed in the car while the kids slept. Then we ALL went souvenir shopping. I am sure Bill felt like we bought the whole store! Dinner at Rainforest Cafe. Maya wasn’t nearly as scared tonight like at TRex.




Day 9: Thursday, June 30th – Magic Kingdom and Drive Home

Today turned out to be our last day at the park. Since we got rained out yesterday, we hurriedly packed up the car and headed to the park. Charlie had already taken Bill, Gayla and Kaden to the airport, so we were with Maya to enjoy a few hours before the next big rain! We went back to Magic Kingdom and rode Dumbo, It’s a Small World, Aladdin and Pirates. Then finished up some more souvenir shopping. It started raining much again, but those $8 ponchos sure did get their use! We started the drive home around 5.
Day 10: Friday, July 1st – The drive home

Long drive home, but a great chance to catch up on pictures and blogging. Maya didn’t want to go home, but she missed Kaden. How cute. Maya did great on the drive home. She didn't fuss much. Spent alot of time on her iPad, coloring and playing with the toys I brought for her. She just talked and talked (and talked) about Dumbo and all her other favorite Disney things to do. She had a great time and we are just so happy she enjoyed it all - and Kaden too...