Wednesday, March 24, 2010



We woke up to lots of snow this morning which closed the schools so Milo has now had his first official "snow day"! Of course we were supposed to have a meeting at the school this morning to go over his IEP so that was a no go either. We had a great day playing in snow in the morning and again in the afternoon. Milo is so much better about touching the snow with his hands. I also learned that he likes to eat the snow, now to teach him the color yellow and to not eat yellow snow. By late morning the sun was starting to peek out and it was quite warm so I didn't bother fighting with him about a coat or mittens. He did have snow boots and fleece lined overalls on so he was quite warm :0) He was so cute trying to figure out how to use the snow shovel. Every now and then he would stop what he was doing and sign "snow" and try his best to say it. He is trying so hard to say words but most of the time all that comes out are the vowel sounds so it takes me a minute to figure out what he means but it is definately a step in the right direction.

Thursday, March 4, 2010

A Not So Gentle Reminder...

This week life gave me a not so gentle reminder that Milo's medical journey is not completely behind us and he still is medically fragile. On Tuesday Milo had a routine pulmonology appointment, he hasn't seen the pulmonologist since last September I think. I didn't expect much at this appointment, pretty much just a yup everything looks good and we're not making any changes to medication until respiratory season is over. Well that's not even close to what happened. The appointment wasn't until 4:30 so we ran some errands in the morning including a haircut for Milo then he had speech therapy at 1:15. I told him we would go to the park before his doctor appointment since it was so nice outside. I noticed that he was starting to wheeze a bit as I was getting things together to leave so I decided to give him a breathing treatment to head off whatever was going on. It usually takes about 20 min to see the full effect of this medication so we hung out for a bit before we left. I have noticed that at times he does seem wheezy and then he will be better in 10 min or so and sometimes he breathes a little fast for a bit but then returns to normal so I did want to ask the pulmonologist about this anyway. He was still sounding pretty wheezy when we left but I figured he'd settle out of it in the car on the way. He played for about 10 min and I decided it was time to head to the hospital because he still sounded bad and was using his neck muscles to breathe. We took our time and picked up a prescription at the hospital pharmacy before heading over to the clinic but we were still 15 min early. We checked in and very efficiently saw the nurse. The doctor came in shortly after that (we usually wait 30 min to see her) and was obviously concerned about what she was hearing. Now by this time the wheezing was considerably less and let me assure you he was his normal active curious self the whole time. In fact she was so concerned she almost admitted him to the hospital but ultimately decided to send him home with a whole bunch of steroids and had us get a chest x-ray before we left. I called yesterday to get the results of the x-ray and it looked alright, no pneumonia. Today I found out that he will have a bronchoscopy with both the ENT and the Pulmonologist on April 9th. I'm not really looking forward to that because once again life could unravel depending on what they see. The results could be anything from it looks fine to something is definitely wrong. Personally I'm hoping it's just an allergic reaction to something so I have limited his diet even further and watching what is going on around him. It could be mucus accumulating in his abnormal trachea so I'm giving him extra water to try and thin them out. It could be that the scar tissue is getting worse or that his collapse (malacia) has worsened it instead of getting better as it should. Oh and not to mention the heart cath that he needs this spring/early summer to see what needs to be done about his pulmonary arteries. I feel like I've been transported back in time 3 years when these were the exact same issues we faced. We're definitely in a better place since Milo can breathe effectively on his own but the fundamental issues remain...some day this will be resolved, I hope...