Wow, where have I been? I haven't been on my blog for FAR too long! I will fill in a few updates...
1. About 2 weeks Dillon had an episode where he was in his room and his night nurse was downstairs getting his formula ready and I went down for my allergy medicine. The nurse and I were talking then heard Josiah yelling for us. Apparently Dillon's machine was beeping but neither the nurse nor I heard it. Josiah heard it (he was also upstairs) but didn't know that the nurse wasn't in the room. By the time he realized that no one was doing anything Dillon's oxygen was down to 30%! We use oxygen to keep him above 92% and he went down to 28% before Daddy was able to help him! Josiah flipped him over, took the CPAP off his nose, did chest PT and was able to get him to start coming back up to a normal range. Praise the Lord for Daddy being there and hearing the monitor. Since this time we have had CHOP Homecare adjust his monitor so the beep volume is at 10 rather than 5. We also now have a self inflating ambu bag and oxygen tanks that go up to 15 liters per minute to use with the bag... just in case it ever happens again... but I pray it won't! Dillon had more seizures the next day and was a little jumpy for a day or two but other than that there doesn't seem to have been any long term effects. Praise the Lord! Another minute or two that low could have caused cardiac arrest!
2. My pregnancy is going well. I am 13 weeks today. The due date is May 27th. Last time I was at the doctor I was not quite 10 weeks and the baby was too small to hear the heart beat so the doctor turned on the ultrasound machine and checked the baby himself. We could see the baby moving all around so he spared me a 60 mile round trip visit in 2 weeks and said I didn't need to come again for a month. So I go again on Monday. I have had the first set of blood work done so I should get the results on Monday. (Just checking vitamin levels, thyroid, etc.)
3. Josiah was pretty sick this week. He came home from work on Monday and had a fever of 103.8! We took him to the ER and they did a chest X-ray - but it was clear. They checked for Influenza A (swine flu) and Influenza B - both were negative. So he has some other virus. They gave him pain meds and the family doctor gave him cough medicine and an antibiotic. So he is doing better and we are praying the rest of us don't get it!
4.I can't forgot about James! James is two years old, he is little and plays with Jay's stuffed monkey, has two eyes and two legs but is GREEN! James went home to be with his Mommy and Daddy though. (Jay's first imaginary friend)
5. Easter Seals in Reading has given us a chair to us use for Dillon until he gets his own. He loves it! He was in it for almost 2 hours today! Often when he put him in it he coos! It is so cute. It must feel good to sit in a full upright position with full support. I am so thankful for Easter Seals loaning us the equipment for Dillon while we wait on insurance! Josiah said we can take it with us to WV for Thanksgiving... for the first time Dillon will be able to sit at the table with us for a holiday meal. He even has his own tray and everything.
I need to get some pictures/videos on but I wanted to at least get the updates on. I think that is all the important things that have been going on in our lives! :o)