We ♥ Singulair!

So my last post stated that we had been to the pediatrician and that he had put Jaime on Singulair....all I can say is HOLY COW, that drug has made SUCH a difference. Prime example...today, Jaime played outside for a total of three hours. (Not all at once, of course, but we only took two breaks.) We were able to have so much fun. The other surprising thing...when Jaime did get worn out, he actually recognized it and he sat down and chalked for a bit. He never once was so out of breath that he needed a breathing treatment. He didn't even cough one single time! I soooooo wish we were able to give him this drug earlier.
Speaking of medications...Jared jumped on the medication band wagon this week, too. Thursday he got this random rash and hives all of the sudden at school. It was pretty bad, I actually had to pick him up and bring him home. Then, on Friday it had gotten worse, so we took him to the allergist. Lo and behold...it was NOT an allergy, rather it was an infection. WHAT? Apparently, Jared has a sinus infection, I have not witnessed any signs of such thing. The allergist said he wasn't surprised that Jared hasn't complained about feeling bad. Kids with bad allergies are so used to certain symptoms being "normal" that it doesn't phase them when they are sick. I was so sad to hear this...poor kid! Turns out with Jared having bad allergies and the sinus infection, this rash was his body's way of trying to fight off the infection. The most common area for hives with this infection is the face and neck...the very place Jared's started.
So, needless to say, we are a little pharmacy here. Jared is taking Augmentin (antibiotic), Orapred (steroid), Cortisone Ointment and Nasonex (allergy nasal spray). Jaime is taking Augmentin, Singulair, Flovent, Xopenex, Atrovent, Miralax, and Prevacid, he just finished his Orapred. And of course, both boys have their hemophilia meds as needed...Advate and Nasal Ointment for both...Stimate and Amicar for Jared. Yep, the Trost Pharmacy! Hey, whatever works to make my boys feel better! I'm thinking we're going to add another allergy medication for Jared once he's over this infection. We're going back in a few weeks to have him re-skin tested...and Jaime will be tested, too.
While the boys were on the mend, I finally crashed and burned yesterday! I got the stomach ick. I was down for the count....for 24 hours anyway! I was in bed for 17 of those hours! By mid morning today, I was feeling fine. I had my car fixed (finally....4 bad struts); the repair shop is just down the street from the airport, so I took Jared to watch the planes. Then, while Jaime was napping, Jared and I played outside. Once he woke up, we brought him out with us...and as I said, he did amazing! Tom had a wedding gig today and was gone most of the afternoon and he's still not home at the moment...so, it was just the boys and I for dinner. We got some Panera (I was still afraid to eat "real" food), so we ate soup and mac & cheese outside. It was a BEAUTIFUL evening to eat outside. Both boys really enjoyed that! After dinner we played tennis, then came in for showers! It was a great day! It's so nice to see both of my boys feeling good and able to play like "normal" brothers for a change! :)
Having said all of that....I got a few phone calls from Cincinnati this week. The first one said that they had to cancel a few of Jaime's tests, but not to worry because they were rescheduled for July 19th! Ummmm, NO! We'll be in St. Louis July 19th for the annual CDH Summit (I can't wait to go!!!). I asked why they needed to be rescheduled and was told that there was a scheduling "error" that these tests couldn't be done after anesthesia. The frustrating part...I TOLD the scheduler that she couldn't do that MONTHS ago! She assured me that it would be fine! Then, I told her that Jaime had pneumonia earlier this month. She said that she was going to have to talk to the nurse to see if Jaime could still go to the OR. After not hearing back from the nurse, I called her. I explained everything that had happened, but assured her that he was much better now. Well, per anesthesia protocol...one must be infection free, ie. pneumonia free for at least 4 to 6 wks. before going to the OR. Soooooo, the entire trip next week is CANCELED! :( I was told that they were going to try and schedule everything for the end of June, but I must say, I won't hold my breath...we were also told that we would be seen in March and that didn't happen either! It's not their fault that Jaime got sick, I'm just frustrated because we were down there in March and stuff could have been done when he was HEALTHY! Anyway, such is life in CDH World!
That's my update and I'm sticking to it! ;) Hope you enjoy the pics of the boys playing outside today...and enjoy the rest of your weekend!