It is hard to hear that I need to slow down when I feel like I am going 10 mph in a 55 mph zone. Well, slow down is what I heard at Max’s 1st feeding clinic appointment on Friday. At his appointment, we met with a doctor, speech therapist, and a nutritionist. Also, the speech therapist that does Max’s swallow studies stopped in for the feeding observation. The reason I applied for the clinic, was help to determine if Max was getting enough calories (determine the amount he needs) and help me work towards getting him off the tube. I know that isn’t something that would happen overnight, but I thought since he was doing well by mouth that I needed some additional help. His speech therapist he sees weekly referred me to the clinic and she was kind enough to join me at the two and a half hour long appointment. The team said that he is doing great, but they do not want to push any more textures at this time. They want him to become more comfortable with what he is currently eating by mouth (soft veggies, fruit, noodles, cheerios, etc.). They do not feel that he is safe enough to advance at this time because of his dysphagia and the possibility of him still aspirating, since he coughed during his feeding observation. They also want another swallow study in 3-6 months before we can give him more than two ounces of liquids at a feeding and more than one drink at a time. So, we have to let him take a drink and take the cup away from him for a short break before we give him another drink. I discussed him not doing well at his last swallow study because of his fear of being in a radiology room and they thought he may get over his fear before his next study. We will see. It was a very overwhelming day for me! I thought things were going so well, only to be told that we need to SLOW DOWN! This feeding stuff is definitely my biggest hurdle with RTS! We will follow up with the feeding clinic after his swallow study. I did get bit of good news from the appointment. Based on the feeding journal I provided the clinic, he is getting 43% of his required calories by mouth. I was SHOCKED to hear that!! 43%!! And the feeding team was very impressed by how excited he gets by food and how he wants to eat for having a NJ-tube then a G-tube. So, some words of encouragement!
Last weekend, Ava got to spend the weekend with her Papa and Grandma Foley. They spent Saturday night in Chicago at a hotel with a pool and went to Disney On Ice. I don't know if she had more fun swimming or at the show. But she had a great weekend and is still talking about it and missing her Papa and Grandma. Her favorite character at Disney on Ice was Tink. Thanks Papa and Grandma for the great weekend!
Max was also suppose to go to Chicago and John and I were going to have a weekend alone. But during the week, he ran a temp for four days. We got him in to the dr and found out he had an ear infection and a pretty good cold. He has ear tubes, but the one in the ear that was infected was clogged with wax so the tube wasn't doing its job. The dr thought that it will unclog by itself. He is on a antibiotic that he has been on a number of times and this is the first time it has given him the diarrhea. This whole month Max hasn't been feeling the best. Before getting the cold/ear infection, he had diarrhea for nine days straight. I am sick of cleaning up after blow outs! I just have to be thankful that it wasn't aspiration pneumonia. I was so worried about that, that I was getting sick. He has been making improvements eating by mouth and I was so worried that we would have to takes step backwards with his feeding. I told my husband that if Max hurt his toe, I would probably worry about aspiration pneumonia! And he has become quite the little cling-on! I want my happy little guy back!!
On Saturday, John had to work and didn't shovel the driveway before he left. Ava said she wanted to surprise dad when he got home and have the driveway shoveled. She shoveled about half of it before she decided she wanted to play with her sled instead.
On February 21, John and his team will be Freezin' for a Reason when they take the Polar Plunge for Special Olympics Wisconsin. If interested in making a donation or JOINING HIS TEAM, click on the link below for more details. John named his team RTS - Reaching The Stars. Thanks!!
John called me at work today to tell my how Max's therapy session went. He said that after weeks of practice during therapy, Max figured out how to put plastic coins in a toy piggy bank using a pincher grip. And with all the encouragement, he repeated dropping coins in the bank. We are proud of all your hard work Max!
A couple days ago, Max started doing the funniest thing. When I tell him "no, no, no" he will look at me and smile and nod his head "yes". I haven't even worked on nodding "yes" with him. Then I would say "yes" to him and nod my head and he will smile back and shake his head "no". It is fun seeing his personality shine through.
I hope everyone had a great Christmas!! Ours was filled with lots of fun hanging out with family. The weekend before Christmas, we spent the weekend with John's dad (Dave), step-mom (Janice), his sister (Deanna) and her husband (Ryan). Santa even made a surprise visit, which Ava was really excited about and hopped right up on his lap to have a little chat with him. Max fell in love with a caroler and angel decoration. He loved to look at them, give them hugs, and play with their hair. It was so cute!! Santa came! Ava and Max with their stockings. Ava with her craft desk Santa and his elves built for her. Santa did a wonderul job and Ava loves having her own desk. And thanks to Will's mom, Myssie, Santa found a great gift for Max. He has been enjoying his tunnel. Not as much as Ava has, but I am happy that he will go through it and has fun chasing Ava through it.
We spent Christmas morning at John's mom (Marsia) and step-dad's (Ted) Christmas celebration. Ava and Max had fun spending time with their cousins Bridee and Lainee. The girls all got new fishing poles. The Snoopy poles will be put into retirement. In the afternoon on Christmas, we spent the rest of the day at my mom (Mary Lou) and step-dad's (Gary) place. Max sharing Grandma's lap with Emerson. Max gets jealous when Grandma holds Emerson, but he doesn't get jealous when I hold Emerson. Go figure! Ava opening her Barbie cash register. This is the first present Max ripped in to with Dad's help. And on the Saturday after Christmas, we celebrated with my Dad's (Gary) side of the family.
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.