Friday, June 26, 2009

Back to normal...

Finally, life seems to be settling down and everyone is healing up. The boys have all recovered and are back to terrorizing the house and everyone in it! Zane, so far seems to be having a great summer vacation. He and I have been spending lots of time together which is wonderful. It's nice to have that Mommy and Zane time where I can just focus on him. I am continually amazed and so proud of what a big influence he is in his brothers lives. Today I asked him in the car, "Zane could you please put Noah's shoes on?" His reply.."No, my feet are much to big for Noah's shoes". His quick wit is hysterical, as long as it's not at my expense of course!
Elliot is expanding more and more every day! Zane says his cheeks are sure to take over his body soon! He is much happier on the reflux meds and we started him on baby cereal this past week as well. We love seeing his personality grow and change.
Noah is doing great! He is becoming much more adventurous and active. We put up our little swimming pool and he went from standing at the side, chucking random objects in, to actually getting in and swimming, in just a few days. His is living up to the terrible two's and has been in "time out" more times than I can count usually for things like, throwing things, hitting one of his brothers, dumping things on the floor, all with an evil cackle that shows no remorse. Should I be worried? Speech and OT are going well, aside from a very upsetting session last week. We had a different therapist who thought that force feeding was the way to go. I will spare you the details, but it was an awful experience for all and I stopped her and the session ended. While this may work for some children, it will not work for Noah. We have worked long and hard to have food and meal times be a pleasant experience, sessions like that will only fuel his anxiety further. Today we met with his usual therapist and things went much better. Although he didn't eat for her, he got off my lap and played with toys and even gave her a hug when it was time to go. There isn't a day that goes by that we aren't proud and thankful for what he has overcome and accomplished. I couldn't help but smile to myself as I was chasing him through Walmart today. What a normal, typical, 2-year old thing to do....I love it!

Sunday, June 14, 2009

What a week.....

So with Noah's birthday behind us, I was ready to move on and focus on feeding issues and tube feeds full force. I should have known Noah would have other plans! We had his two year check up in Ann Arbor on Tuesday. We met with the surgeon, dietitian, and OT. All went well and his surgeon was happy with his tube site and recent chest x-ray. We discussed current feeding strategy and some ideas to chew on for a few weeks and changes to make. I noticed that Noah was strangely docile while we were there, which is quite unlike him. When we got home I could tell he wasn't feeling well. Sure enough we were into the Dr Wed morning with a high fever. The pedi checked him out as well as Elliot (who is still coughing from two weeks ago). She said again that it was just viral and would have to run its course. She told me to expect fevers for a day or so and just to give Motrin. Elliot was diagnosed with reflux that was causing his chronic congestion. I have seen this coming for weeks so I was quite happy to get him some reflux medication started. Noah's fever spiked the next day as high as 104! They said as long as Motrin would keep it down not to panic. Motrin was bringing it down but only to about 101-102. He wasn't tolerating tube feeds and by Sat he was seemingly worse and his cough (from weeks ago) came back with a vengeance. Then he broke out in a rash that seemed to spread quickly. I called the pedi on call and we were told to take him to the emergency room. By the time I got there, he was coughing nonstop and his rash seemed to be everywhere. He was satting in the mid 80's so he was immediately given a breathing tx which quickly brought him back up into the 90's. They did a chest x-ray which showed no sign of pneumonia, thankfully. They did discover a pretty nasty ear infection and deemed the rash to be possible Scarlet Fever. There was a small moment of panic on my end when I heard that, but the Dr told me it is basically a side affect of strep and isn't as bad as it used to be many years ago before antibiotics. He was given an antibiotic for the ear infection as well as the scarlet fever. Thankfully they released him home. He still isn't tolerating tube feeds. Even 30cc made him wretch like crazy last night. I started him on a very low rate of pedialyte last night and he did better with it. This is the sickest I have seen him that's for sure. He is lethargic and miserable and the cough is just wearing him out. Right now he is laying on the couch with a pillow and blanket watching the Food Network. (Ironic viewing choice, I know). I am hoping that magical 24 hour mark of antibiotics will make him a new man.
Luckily Zane seems to have bypassed this all. He has been so great this week, being hauled around to Dr appts and a long road trip to Ann Arbor. Not a great start to his summer vacation, but what a trooper he has been. Now he is relaxing at his Mimi and Pappy's house for a much deserved break from his little brothers!

Monday, June 8, 2009

Look Who's Two!

Yesterday Noah celebrated his 2nd birthday! Each day seems to bring something new. His personality is shining through more and more. When I think back to where he was two years ago, it just doesn't seem possible that he was ever that sick. Although he still struggles with feeding issues and other typical CDH stuff, it doesn't keep him down. He is happy, playful, and full of energy, everything typical of a two year old! Overall he has had a great year! He took his first steps, is learning more and more words and became a big brother. He has only had one hospitalization and few minor procedures, all involving his feeding tube. His social skills and anxiety have improved by leaps and bounds. He is finally trusting enough to enjoy being around other people and kids. We are continually amazed at his progress and are so very thankful to be where we are today. We want to thank everyone for being such a great support system and encouraging us along the way. I don't know how many times we have said that we couldn't have done it without our family and friends. It's crazy to think that two years ago we were just starting out and to look now at how far he has come. He may never know just how special his birthdays will be for us! Here's to next year and I hope by his 3rd birthday, he will actually want to EAT his cake!

Tuesday, June 2, 2009

A Sticky Situation....

So, the other day, I heard a loud crash, immediately followed by Noah screaming as if someone was shooting guns at him. He came roaring out of the kitchen and literally almost jumped in my arms. When I walked in the kitchen to see what had happened, I could see a light mist throughout the entire room. It took me a minute to figure out what had happened and that what I was seeing was a fine mist of soda covering every single square inch of the kitchen. Somehow, Noah had smuggled in a can of soda from the garage and dropped it on the tile floor and it of course, exploded. Meanwhile, as I was scrubbing down the walls and floor, I glanced into the living room at Elliot, who had quietly been laying on his blanket under the toy bar. I noticed that he was on his belly....and I had laid him down on his back! So here poor Elliot rolls from his back to his belly for the first time and we all missed it! Never a dull moment...Zane thought the whole situation was hysterical and was happy not to be the one in trouble!