That bug that has been going around! Ava came down with it Monday night, but seems to be doing better today. She is back to flipping around the house. Max came down with it last night. He threw up three times last night and once today. He has also had diarrhea(sorry) all day. So we have him mainly on pedialite until he can keep pediasure down again. We are skipping out on the Christmas Eve festivities we were planning on going to and hope he is better tomorrow. We have Christmas at John's mom's and my mom's tomorrow. Hope for a quick recovery!
A couple weeks ago Max went from being a ducky to an otter. What does that mean?!? It means he moved to a new room at day-care! He is now with a group of kids that are 18 months to 2 years old. A month or so ago, the director of the center asked me what my thoughts were about moving him up. She felt that it would help him developmentally to move up. She said that he has outgrown the room he was in. John and I met with the director and his teacher and agreed to move him up. I was not nervous at all about the transition since the led teacher in his room was also his lead teacher in the baby room and knows Max very well. And has been waiting to get Max back in her room again. We were excited about the new step in Max's life. And he is doing great. He sits on a little chair for meals and naps on a mat. Which, to my surprise, he is doing very well with both. I can't believe he is napping on a mat! They said his favorite part of the day is circle time where they sing songs and read books. He gets one of his g-tube feeds during circle time and sits very well for it. I am so glad we have a great, safe place for Max and Ava to spend their days while John and I are at work. They have never made us feel like they cannot handle Max's needs.
Max with teachers in new room (The Otter Room).
Max with teachers from his old room (The Ducky Room).
Yesterday we had Max's two year check-up. Here's his stats:
Weight: 20.6 Pounds
Height: 30 Inches Long
At his one year check-up he weighted 18.3 pounds and was 27.5 inches long.
His lungs sounded good, which was my concern since he started taking liquids by mouth, and his ear tubes looked nice and open. Yeah!
Our main topic of discussion was Max's feeding and how I am a bit at a loss with it. I am not sure how to increase how much he gets by mouth and decrease his g-tube feeds (even though right now he is not getting enough by mouth to decrease his g-tube feeds), calculate the calories he needs, etc. Ahhh! I heard from Max's ST about a new feeding team at the hospital that has a dr, speech therapist, and nutritionist that work together. Max's pediatrician just talked to the dr that was in charge of the program and also thought it would be a good thing for Max. Max's pediatrician made a call to the team and is going to schedule Max's first appointment for us. So hopefully I will have news on that soon!
During the whole appointment, Max sat on the dr's lap, gave her hugs, and played with her hair. I think it is cute that Max likes his dr so much. He even gets excited when she comes in the room.
Back to the feeding. It seems like over the last few days Max is regressing in his feeding skills. It doesn't seem like his chew is as strong and he is not swallowing his food. He is letting it just hang out in his mouth. He has had a bit of an upset stomach this week along with diarrhea and I am not sure if he is just not in the mood to eat. He is still wanting to put the food in his mouth though. Any suggestions? Should I worry?
At Max's last swallow study, we were told we could give him an ounce of liquids with each of the meals he eats by mouth. I was a little worried about getting him to use a sippy cup or a cup to drink out of since he hasn't had a bottle since he was three and a half months old. Much to my surprise, he is doing great. He does really well with an open cup (with our help), but I also wanted him to drink from a sippy cup. I haven't been able to get him to drink out of a sippy cup with a valve since his suck isn't strong enough. I took the valve out of the cup and he did pretty good, but I was concerned about the milk coming out too fast. Last weekend, I tried the take and top sippy cups and he does great with them. He is able to get milk out and doesn't make a huge mess. He loves drinking! Milk is his favorite. He has also tried juice. It feels good being able to give him liquids. . . so far he has remained healthy. I tried to give him half milk and half pediasure and he wanted nothing to do with it!
As far as food by mouth, he is slowly progressing. He is currently eating small chunks of soft fruits and vegetables. He also still gets purees that are not too thick or have much texture. And of course his loves. . . cheerios and cheeto puffs.
I am glad that he loves eating by mouth. He would put anything in his mouth, it is just that he can't get it down without gagging. Small steps!
Friday night we went to the visit Santa! Ava was excited all week. Ava got a little "star struck" when she sat on his lap. She couldn't even tell him what she wanted for Christmas. Even after me telling Santa she wanted socks, she still didn't have any thing to say. So Santa told her that she could e-mail him with her list. Funny!
Max didn't want anything to do with Santa. I only got him on his lap for a quick picture. Two months ago, Max would have greeted Santa with open arms. He is getting a touch of stranger anxiety. My baby is growing up!!
Santa was in the school's gymnasium. Half of the gym was blocked off with curtains for the kids to shop for Christmas gifts. Each kid was able to fill out of list of who they wanted to shop for and a budget. The gifts ranged from ($1 to $5). One of Santa's helpers took them shopping and helped wrap the gifts. Ava came out with gifts for John, myself, and Max. And she hasn't told anyone what she bought. . . yet! Last year when she finished shopping, she came out and handed me the bag with the gifts and told me that she got me a snowman and dad a screwdriver.
Last year we started the "Elf on a Shelf" tradition in our home. It is cute and Ava seem to really enjoy it even though it really hasn't made her behave any better. The elf, which Ava named Pig last year (go figure), arrives during the holiday season and is one of Santa's helpers. He watches the kids during the day and reports back to Santa while we are asleep. When Ava wakes up in the morning, she has to find Pig since he moves to a different spot in the house when he gets back to the North Pole each night. And there is a rule that if you touch him, his magic wears off. Ava is VERY strict about that rule. The hard thing is remembering to move it each night. I have to give John the credit for keeping Mr. Pig's spirit alive this year.
On Sunday, John and I got the chance to go to Lambeau Field to the Packer/Panther game. John got the tickets through work that included a bus ride to the game and a tailgate party. We left Madison at 6:30 and arrived in Green Bay around 8:30. The tailgate party was inside, which was nice. Being outside for the game was enough for me! John and I had a great time at the game even thought the Packers lost. John was much more upset about the loss than I was . . . he is probably still upset.
When we were at my mom's house for Thanksgiving, my brother and sister-in-law were there with their new baby Emerson. When my mom was rocking Emerson, Max stood at the bottom of the rocker thinking "what about me". So my mom picked him up and rocked both of them. It was too cute!
Max may be jealous of Emerson stealing a bit of his spotlight, but he has lots of love for her.
Ava's class made turkey cupcakes on the Wednesday before Thanksgiving and were told by their teacher that they had to take them home or they were going to be tossed. Well, we were home when Ava realized she forgot her cupcake and inconsolably cried because she forgot her cupcake and Ms. Mara was going to throw it away. So, Dad told her they would look on the internet and find the cupcakes they made at school so she could make them with her cousins when we were home for Thanksgiving. They found the cupcakes online and went to the store and bought items to make the cupcakes. Ava and her cousins really had a good time making the cupcakes and especially enjoyed eating them. Aren't they cute!
Today Max had a swallow study. . . if that is what you want to call it!! Over the past six months or so, Max has not been a fan of any of the radiology rooms. As soon has he gets in to the room and looks around, he begins to shake and cry. It is heartbreaking. Especially when you know that they are not going to do anything that will hurt him. I think he would rather go in for surgery than have a chest x-ray taken. Poor guy!
We only were going to give him liquids today since he previously passed for nectar and honey consistency. We got him to take a couple drinks in between cries and when he swallowed it looked good! So our plan is to give him an ounce of liquids each time we feed him by mouth for about a month. If he doesn't get sick, we will increase the amount. I don't like the fact that we are relying on remaining aspiration pneumonia free to see if he passed the swallow study. But we really don't have a choice right now since he will probably never have a good swallow study again unless he gets over his fear of radiology rooms. For the last three or four months we have been giving Max liquids from a baby spoon and he hasn't gotten sick, so that helps ease my mind a bit. Cross your fingers that we can continue to increase liquids by mouth for Max!
A few minutes old. . . Max is One. . . Max is Two! Last weekend, we celebrated Max's 2nd birthday by having family over. Papa Dave made Max an Elmo cake which was as delicious as it was ADORABLE!! Max got to enjoy his birthday cake this year!! I think I enjoyed the fact that he was able to enjoy his birthday cake even more. There was no better feeling that day then to plop a big piece of cake and a scoop of ice cream on his high chair tray and let him go to town! He wasn't too interested in opening his presents, but big sister was more than willing to help out. We gave him a police car rocker that lights up and makes noises. Lights and noise is always a hit for him. Max loved all the attention and being able to show off and he had quite the audience for that. Happy Birthday Max!! We love you!! I have to admit that Max's 2nd birthday was hard on me. I couldn't help but to think about what he is not doing at two. . . things I was expecting when I was expecting. I turned those thoughts around and thought about how encouraged I am by the things he is doing. The things I didn't think he would be doing on his 2nd birthday when he was diagnosed with RTS. On Max's 2nd birthday he can stack rings and blocks, climb the stairs, sign "more", rock and bounce on riding toys, pass a swallow study for everything except for thin liquids, go a day. . . a week. . . even more without throwing up, handle his secretions better than he did six months ago, work really hard at eating textures, can eat cheerios and cheeto puffs like they are going out of style, loves to dance when being sung to, is interested in puzzles, trains, and cell phones, is doing great with his friends at day-care and is moving to a new room on December 1st, can bring you up when you are down by seeing his contagious smile on his face. OK, you get my point. The list can go on and on! And his most recent accomplishment is how good he is doing with trying to walk. He is even initiating walking by himself! Go Max!
Max has one sign down. . . More! I am super happy that he is using the sign for more, BUT he is starting to use the sign for more for everything. Example: Wanting cheetos or cheerios from the pantry, wanting me to pick him up, I even think he uses it when he is done with something. He is getting frustrated and so am I. I am trying to get him to use different signs and point to what he wants, but for now he just finds them entertaining when I show them to him. I don't want him to become frustrated with me not understanding what he wants. Previously, his wants and needs where much easier to determine. But as he is getting older, it is getting harder to figure out what exactly he wants. And if I don't get it right, he signs "more" harder and faster. And if I still don't know what he wants, he makes fists and taps them together. Any suggestions??
Now that Max is in size 18 months sleepers (he has yet to see 18 month clothes for anything else), I can no longer find blanket sleepers with buttons. They all have zippers. And since Max doesn't like to keep blankets on and is still getting an overnight drip through his G-tube, I had to come up with a way to keep him warm at night and feed him at the same time. My mom sewed a big button hole in his sleepers. It works great! Max says "Thanks Grandma Olson. . . I know you like me to be warm!"
I hope everyone had a good Halloween! Ava enjoyed her day that began with trick-or-treating and a party at day-care. I joined her for her party. That night, Papa and Grandma Foley came to our place to see the kids in costume and enjoy the night with us. Dave dresses up every year to scare the kids that come to our door and to take Ava out trick-or-treating. Again this year, Ava was scared of him at first even though she knew it was him. Max just looked at him and laughed and grabbed at his mask. While trick-or-treating, Ava didn't want me to come up to the door with her. She told me to wait by the mailbox while she went to the door. My little girl is growing up! Sniff! She said next year she wants to go out alone! Ya, right!!
Max's day didn't go as well as Ava's. At 10:00, day-care called and said he threw up twice and was running a 101 temp. John picked him up and spent the day with him. He was in good spirts when Ava and I got home. We dressed him up for a few pictures and to take to my Aunt's house to see him. He is feeling much better today! I hope this is a sign that he will handle being sick better this year!!
I married my husband, John, in June of 2002. We have two children, Ava and Max. Max was born on November 15, 2006 with a rare syndrome (Rubinstein-Taybi Syndrome). I hope to educate others about RTS and meet families on the same journey.