This blog began when our then 14 month old son, Landon, was diagnosed with a rare, metabolic disease called Cystinosis. He is 1 in about 2000 in the world. We have come to realize that this was only a chapter in our book so this blog will share all of our adventures.
Wednesday, August 1, 2012
Summer Fun!
I have been meaning to post but it keeps slipping my mind. We spent the week, last week, at the beach in Ocean City, MD. Landon did incredibly well being away from home and a bit off of his routine. There is no doubt that he thrives on it but it's nice to know that he is still his sweet, silly self when we don't totally stick with it. He woke up each morning to a condo full of people he loved who were ready to give him their full attention. What else could a little boy ask for? He slept well at night and napped well so my anxiety about that was put to rest...
He did better at the beach and with the water and sand than I expected and even went into the swimming pool. I have to say that he was most comfortable with grandma in the water. Jimmy and I were so pleased and so proud of our big boy.
We have one more vacation to look forward to. Landon is going to attend his first concert this month, the Wiggles, and we are going to go to Hershey Park.
It has been a great summe and our boy is getting bigger and doing and saying more all the time! He now weighs 22lbs! And the best thing is that he is beginning to eat and swallow so much better. I mentioned before that he put lots of food in his mouth a d would chew it but then spit it out. Jimmy and I have decided to no longer accept him spitting food out. It's just not an option. We remind him to take small bites, to chew and to swallow.. We offer him a drink in between bites and he had had much more success in swallowing! Now, we only started doing this when we noticed him swallowing more food on his own but we have set expectations now and it seems to have helped. The feeding tube is still necessary and we don't plan on weaning him from it anytime soon but this is huge progress! He takes in about 1200 calories from formula each day which promotes growth and the extra calories from food is a big bonus. At this rate he should average about a pound a month in weight gain. He was sick a few times this summer which knocked him back a bit but he has done really rally well overall.
At the end of this month, he has an appointment at the Childrens Institute with a feeding team. It is a local rehabilitation facility for children. He has made lots of progress but I think their input and feedback will be helpful.
So you see, lots of good and fun things going on. My sister sent me a video of Landon when he was just beginning to walk which was about 9 months ago and it melted my heart and made me so proud. He . He had grown and developed so much in that period of time. I could not be more proud. I just love being his mom and watching him grow.
I wi try to post some pictures later! Thats all for now!
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