The Pringles: July 2011

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!

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.

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...