There have been some big changes going on around here. Isaac is doing so well lately and he's been on room air (no oxygen) most of the time. He wears his PMV like a champ and his sats have been great. His Pulmonologist has approved for us to decrease the amount of nebulizer treatments he gets during the day. This will certainly make life easier for everyone, including ME. It requires some multi-tasking to make dinner, help with homework, laundry, dishes and balance a medication schedule. I've been able to make his schedule more Mommy friendly and Isaac friendly too so that he has more time to play!The nursing situation has taken a drastic turn as well. There are new nurses in training right now and we are hoping to find a good nurse. Autumn is excited to have the job of asking the nurses important questions and telling me later what she thinks of them. It's so cute to see how protective she is of her brother. She's trying to think of some good questions for them. Needless to say the next month or so will be interesting with new people in the house. I could use some prayer that we find someone who works well with us and Isaac. I know that God is in control and he always takes good care of us, I have no doubt that he will provide.
Isaac is my little teacher. He's taught me so much about what true happiness means. It's being loved and accepted regardless of your limitations or imperfections and finding joy in the simple things in life. Isaac doesn't need much to break out into a great big smile, a favorite song, a smile from a loved one or a caregiver is all it takes. Isaac would never want any of us to look at him with sadness or pity. He just wants us to love on him and have a good time with him. After Isaac's ENT procedures, an anesthesiologist came over (one I've never seen before) to see how he was doing after the procedure. He looked at Isaac with sadness. He said a few things that I didn't appreciate very much about how grateful he was that his granddaughter is healthy and doesn't have a trach. I know he meant well, I don't think he meant to offend me at all. Some people just don't understand. I was getting a little annoyed with him and couldn't wait for him to leave! I felt like I needed to explain to him how happy he is at home and that he actually does have a good life in spite of his health issues and limitations. Since Isaac was recovering, he couldn't see the REAL Isaac, the one at home who has a sparkle in his eyes and smiles real big. When I see this picture, I see a little boy who just wants us to be silly with him and enjoy him. Don't be sad, that's just a waist of time! 
We're having so much fun with our new toy! Isaac's new favorite is the Jukebox app where he selects one of his favorite songs.
Hmmmm....maybe this will be a good one.
He's so happy to hear that he chose "The Itsy Bitsy Spider." 
The one picture he recognizes from his Go Talk device is "Twinkle, Twinkle Little Star," so he will try to choose that one on purpose.
We FINALLY got Isaac's ENT procedures done yesterday! Everything looked good except for the ears. She removed lots of yucky junk and the old ear tubes. She didn't put new tubes in because she said that they were not functioning properly for him anyway and causing more of an obstruction. I guess that would explain the smelly sock factory we had going on in that right ear. Whew! He's doing well since the procedures, but needing just a little o2 today.
We got an Ipad for a belated Christmas present a few days ago. I know Isaac can't talk or communicate much, but we know that he loves anything that has to do with music. The baby piano is his favorite so far. It's easy for him to use with his hand limitations.
Hmmmmm, this is interesting.
Concentration really hard.....This is cool! 
Our ENT procedures are scheduled for Monday. I'm hoping that he keeps those lungs clear and has good Potassium levels so that we can finally get it done!
There have been some big changes going on around here. Isaac is doing so well lately and he's been on room air (no oxygen) most of the time. He wears his PMV like a champ and his sats have been great. His Pulmonologist has approved for us to decrease the amount of nebulizer treatments he gets during the day. This will certainly make life easier for everyone, including ME. It requires some multi-tasking to make dinner, help with homework, laundry, dishes and balance a medication schedule. I've been able to make his schedule more Mommy friendly and Isaac friendly too so that he has more time to play!
