Let's see, what's been going on?
Josiah: Working, helping with the kids, singing for church, men's book study with men from church, video crew at church, etc.
Tiffany: House cleaning, laundry, caring for the kids, video crew at church, home school with Jay, etc
Aren't we exciting?
Now for the fun ones in the family...
Dillon: The brace was allowed to come off on Oct 27. He had been doing great with it off. Dillon has been going to church with us again. Yesterday he went to a vision class at the YMCA that his vision teacher heads up. He loves it! He was cooing during the circle time and did a craft. I even helped him finger paint the icing on his cookie and smell and taste the icing. He had a great time.
For almost 3 weeks he has been off ALL oxygen all day long!!!! Praise the Lord! I can't remember a time when this has happened. I think the robinul he is on to dry up his secretions are helping him to breathe better (since he isn't drowning). I am thrilled! Do you know how nice it is to just carry Dillon outside one some sunny days we had without having to take the pulse ox, suction and run oxygen tubing all the way out? I don't think I could describe how nice it has been to go out and just have oxygen in case we need it, but we haven't needed it! Instead of going through a huge oxygen tank every week we have been going 2 weeks and still only half empty! Thank you Lord! I can't thank you enough for the blessing it has been these last few weeks!
Nursing situations continue to test me. In every way, patience, being positive, trusting God, not hurting anyone, etc. We have had a lot of on going issues that I am trying to figure out how to handle them so they won't continue to happen and all the while trying to make sure Dillon's care is being done and without making everyone hate me. If I am too nice things don't get done, if I am too business I get people upset with me. I would rather have people upset with me, but even that is hard when I have to have a business relationship with people on a daily basis for the rest of my life! Please continue to pray for me. I don't think I will ever have this "figured out" as I am dealing with so many other people and I can't control how they act/talk/work/etc let alone how I act/talk/ etc.
Nov 18 we have an appointment for aquatic therapy at CHOP. It is the evaluation then we will schedule the actual appointments. I can't wait! I think Dillon will do great in the water!
Dillon did GREAT for the vision teacher today. I hung a black sheet in his therapy room that is the background for him to look at objects. We used it for the first time today and Dillon did so good. He kept opening his eyes to find a pink ball she had as she brought it into his view. I am so happy! He was actually opening his eyes, locating it and locking his eyes on to it.
Later today I picked Dillon up and heard a loud POP in his left leg. I didn't have a nurse here with me so I called my mother in law (who works on rehab floor in a hospital) and I called Josiah. Josiah came home from work when he heard me in tears. I thought for sure I dislocated his hip again. Right after it happened his eyes became huge and his heart rate went up and his whole body was tight. I called the ortho doctor and his nurse said to wait a couple of days. A couple of days? I think I dislocated his leg that he just had MAJOR surgery on and we have to wait a couple of days? I was a mess thinking I did something because every time we touched him his heart rate would go up. We decided to take him to a local ER and have them X-ray to see if any damage was done. It turns out it was just a ligament or something because the X-ray looks good. So I could have waited - but them I would have been torturing myself wondering if he dislocated it again and if he was hurting and if he would need surgery again etc. It feels much better to know the X-ray showed it is ok. They said the ligament could hurt for about week. :o(
JayDonn: Jay has been doing great with school. He can write almost every capital letter now. He loves doing school work. The only time we seem to have trouble is when the work is too easy for him. I was working with him on piano too and he couldn't do a simple 1-2-3 and I couldn't figure pit why. Then I remembered! Just because the book says to do right hand right doesn't mean I have to. I started with his left and PRESTO he got it! I have to remember he is a lefty! I can't remember any of the funny things he has been saying recently. I will have to start writing them down to put them on here. For a long time after Dillon's surgery Jay was in "melt down" mode. Since Dillon is coming out of it and able to go places with us again Jay is doing much better. His world is returning to normal. He is too smart for his own good! :o)
Truett: Truett - my baby - is growing up so fast! He is trying so hard to crawl. He gets his legs up under him then kicks out but usually doesn't go too far. If we put him on the inclined floor he can crawl the length of it (8 feet) in no time at all. He doesn't sit yet, but he doesn't stop moving long enough to sit. I think he will crawl before he sits. He still projectile vomits all over the place. Last night I held him above my face and he puked into my eye, in my nose, in my mouth, and covered my shirt. It was nasty! He sleeps in his crib in Jay's room now so we only have to heat one room. He usually goes down about 11pm and sleeps until 7am.
I think that is about all for now. I have to remember to update more often and to get pictures/videos on. Maybe one of these days - when I have nothing to do - I will sit down and catch up one them.... hahaha.... maybe. Thank you to everyone who reads this blog and everyone who prays for us. You don't know how much it means to me to know that when I feel like quitting, when I feel so down and discouraged there are people out there who are praying for us. No one told me the hardest part to being a Mom is having a special needs child, and the hardest part to having a special needs child is all the other people I have to work with on a regular basis.