Update

 (Pictures from week in WV, first several are from our 3rd Anniversary at Tygart Lake, then some from Cooper's Rock, then from all the family on Tygart Lake on Saturday)

Wow, it has been a while since I have blogged! I have got to stop waiting so long! My blogs end up being too long as I update you if I don't keep up with it. I'll try to keep it quick!

• Dillon's day nurse, Barb, quit. She hasn't been here in over a month. She hurt her back and is still on light duty. We really liked her and how good she was with Dillon. However, she told me today that she has taken another job that is more "light duty". We need to start with a new nurse, so please pray for God's will here. I will be meeting one, possibly two, next week to decide who to go with.
• Last Monday we took Dillon to the doctor and he confirmed what I suspected, ear infection. He started Dillon on an antibiotic. 
• We left right from there to go to WV to see Josiah's family. It was our anniversary last Wed. so they watched the boys and let Josiah and I go out on day trips and such. It was so nice. Thank you SO much for all your help with the boys Dad, Mom, Hannah, and Dan (he was there too)! And HAPPY 3rd ANNIVERSARY (again) Josiah, I love you so much! You are a wonderful husband! I couldn't imagine life without you, you are my best friend.
• On the way to WV Dillon aspirated. He threw up milk and then coughed literally 30 minutes without stopping! It wasn't until I gave him a breathing treatment in the car that he stopped. But he was just put on the antibiotic, so we just gave him the extra oxygen he was needing. Then one week later, at home he did it again, at least he was still on the antibiotic. He is doing better now, still needing a tiny bit of oxygen, though. I have started masking him again. I had stopped when Barb quit, but I think it is necessary for his health that I continue with it.
• A night nurse started Sunday, so we should have all 7 nights covered again by two different ladies. They are both very sweet to Dillon so hopefully they will stay.
• Yesterday I took both boys to CHOP by myself! Dillon had an appointment for pre-surgery stuff for his tubes (which go in on Sept 15). It wasn't too bad! I stopped once going and once coming on the side of the highway to help him, but other than that we did ok. It took a while to unload, once Dillon and all his stuff was on the wheelchair, I strapped Jay to me with the baby carrier and away we went! I met a mom there with the same kid kart (wheelchair) that we have. Her daughter has CP and is almost two years old. She was so cute! I asked her how she was doing and her mom told me that she just had blood taken so not too good and right then the little girl smiled so big! Typical little kid, trying to prove Mom wrong! :o) I was able to give her Dillon's story, I think she will probably relate to much of what is in it. (be prepared, I am about to get on my soapbox for a few minutes!): There are so many people hurting because of disabilities, CP in particular. 2-3 Children per 1,000 born in the US will have CP; this is about 10,000 a year! Some may be mild cases, but many are severe, some even as severe as Dillon. 80% or more marriages end in divorce once a disability enters the family through a child. I even read that the life expectancy of a mom with a special needs child is 10 years less then Moms without special needs children. People are hurting! I know how badly I hurt and I know I am not the only one out there. We, as Christians...as Churches, need to not forget this mission field! We have the answers, we know the God who forgives sin, Who cleanses us and makes us whole, we know the God who is in control of everything, who is merciful in letting this happen to our children in order to give us time to come to repentance...yet are we sharing it with the parents who are hurting so bad? I am so annoyed with Americans, myself included, that we live in the mentality of "It won't happen to me!" Wake up! I had the most picture perfect pregnancy possible, I had an easy, short labor, I was young, I was healthy, I exercised during my pregnancy, I was newly married, just starting our life together...IT HAPPENED TO ME and IT COULD HAPPEN TO YOU! Just as we aren't promised a tomorrow, we aren't promised healthy children. These people who seem so different and you are scared to talk to - may be you in the blink of an eye if God chooses to allow you to have a child with disability. Please! Don't be afraid to talk to parents when you see them with a special needs child, more often than not they will be thrilled to know someone cares about their child and isn't just staring at them like a freak show. Trust me, every time I am out with Dillon I feel like a freak show! People turn their heads 180 degrees when we walk by and often do the whole "ohhhhhh poor baby" thing. Please - don't. Just love them, just show them that Christ loves them and gave his life for them. The song I love has the words "How can we reach a world we never touch, How can we show them Christ, If we never show them love" You want to make a lasting impact on a family, to go along way in planting a seed for Christ? - open your heart to a special needs family; be willing to learn from them, be willing to pray for them, be willing to listen to their burdens, and be willing to cry with them, most importantly - be willing to love them as Christ does. 

Ok - I will get off my soapbox...for now. Please know this is not directed at any person, it is just what has been on my heart for a while and I felt with was the perfect time to share it. 

Congratulations!

Last evening my mom called me from an activity at her church. Her Pastor and his wife have four daughters, three of which are married. The last two to wed each have a child. The first daughter, K and her husband N have been married for six years and have not had any children. Well last night my mom told me K and N have a little boy! (huh?)

Well I was able to talk with Mrs. B and find out some of the story... I hope I get this right. If I get something wrong, my apologies.

Basically N was working in the hospital on the OB floor and there was a lady that had her baby boy at 31 weeks, he was only 3 pounds something. N knew she wanted to give him up for adoption but due to privacy laws could not say anything to the mom about him and his wife adopting the baby. Somehow, someone else told the mom though and she called N and K! The baby is almost 7 weeks old, is up to five pounds and is out of the hospital. K has not seen the baby in person, but on Sunday (tomorrow) she will be handed her band new baby boy!!

CONGRATULATIONS TO K AND N

AND THE VERY HAPPY GRANDPARENTS, AUNTS, AND UNCLES!!!

Isn't it neat how God works?!

Fries with your Ketchup?

You bring your fries, I'll provide the long past due, much needed ketchup. 

Let's see, where to start? Hannah was with us for 7 weeks! What a blessing that was! Thank you Hannah, you were such a help and encouragement to me. It was so much fun having you here. It was like I finally had a younger sister that I have always! Some of the highlights of what we did while she was here: Hannah died my hair twice, we went to the salon to get our hair cut for my birthday (Thank you to Josiah, my Dad and Mom and Grandpa and Grandma for doing that for me). I discovered while it was fun it is NOT worth paying that much in the future. We took pictures in a park for a surprise 3rd anniversary present for Josiah. (He saw the thumbnails on the computer so he knows it has something to do with pictures but I can't explain any more yet).  We did a bunch of other things too, but I can't remember them all right now! Thank you again Hannah!! And thank you to Dad and Mom K for letting Hannah stay and help us, we know you missed her while she was gone!

The stye Dillon has had since May is almost gone, Hannah and I popped it (not the dumb way the doctor told us to, though) It is still there but is so much smaller than it was!

We have not had a regular night nurse since May. We have on average 2 nights a week. Hannah left on Sat July 26 and on Monday July 28 my day nurse was called off for 3 weeks due to back problems. It has been a long two weeks, which is why I haven't had time to update my blog.  We are surviving, ONLY because God has been so good to us in letting Dillon sleep every night from 12am - 6am without beeping at all! We have him sleeping on his stomach on a foam with a cut out for his tube with .5 L oxygen. He seems to love it! It takes the pressure off his tube but allows all the drool to come out of his mouth so he doesn't have to cough it out. What a blessing!! I would be a complete zombie by now if God wasn't helping Dillon to sleep so well!

We are still seeking a nurse, if you know of anyone interested in the job, please please PLEASE give them my name and number and get them in contact with me!

JayDonn has 10 teeth now, he is almost done cutting his top molars. he is also taking step on his own. He will usually only take 2-5 steps but he is gaining confidence everyday! We have also seen him walking in the kitchen when he didn't know we were looking!

Jay is playing more and more with Dillon. He loves to kiss Dillon's head and try to lift Dillon's head for him. He also will go to the basket, get the chest percussion tool and start doing chest PT on Dillon. He is even trying to suctions Dillon's mouth for me now. He is starting to be such a help!

We have depositions next week for Dillon's court case. Tuesday the Attorneys are coming to our house to explain what it will be like and Thursday we will go to Allentown and meet with the defense Attorneys for the depositions. 

Aunty Anne leave Thursday for Thailand for about 9 months. We are going to spend the afternoon together on Wednesday. Will you pray for her as she goes over to help missionaries on the field?

JayDonn is also starting to talk some. He says "bad" (which he got from me talking about something else, I don't even tell him that he is bad or anything!!!) he also says "no" ( I DO tell him No a lot!), I have heard him say "yellow", "apple", "I got it", and a few other things I can't remember right now. He is growing up so fast!

Dillon seizures are normally very good. He has 1-2 a day. Today he is having a bunch, they are short, though. I think it is because I have not been masking him the last couple of days. I have to set a stopwatch online to buzz every 5 minutes so I remember to mask him for 30 seconds every five minutes. Dillon's whole program is on hold since Barb isn't here to help. I have my hands full with his care, Jay's care, cleaning, cooking, and laundry. I just can't do his program, but he is by his bright lights and black and white pictures all the time and I have been doing my best at masking him throughout the day.

Well that's enough for now, pictures will come later.....maybe! :o)