Sunday, June 28, 2009

Long time - no post

It has been a long time since I last posted. A lot has happened. I will try to hit a few of the major things.

June 16, 2009 - Dillon's THIRD birthday! Happy Birthday my sweet baby! We were in WV with Josiah's family and traveled home on Dillon's birthday, but the day before we went out on a lake and had a birthday party with a cake and all. Dillon's birthday is always a mix of emotions for me. I am so happy he is alive! I am so happy he is doing relatively well. I am happy for every little step of progress he has made. I am sad, though. Sad for all the things Dillon can't do. Sad that he has to live in a body that is controlled by such a hurt brain. Sad that he has to struggle for everything in life - even his next breath. But I am rejoicing that he is in God's hands. Rejoicing that I know God has a purpose for Dillon's life. I know that God would not leave Dillon here on this earth, with his body the way it is, if He didn't have a great purpose for Dillon. So you see - June 16 is a day full of different emotions. This year, I choose not to dwell on the reasons to be sad and to only dwell on those that will make me rejoice. Also this year on Dillon's birthday the Pottstown Mercury published a wonderful article on Dillon's upcoming trip to China. To read the article go here

Or copy paste this:

June 17, 2009 – June 24, 2009 Dillon’s auction went well! As I said, once all the money comes in we will have raised about $1,100! I think this is a great success, especially since we threw it together in about a week’s time! Thank you again Wendy, and her boss Jay for the wonderful idea and getting this started!

June 22, 2009 – My 24th birthday! Lori – one of Dillon’s volunteers…and now a good friend! – took Josiah, Dillon, Jay and I out to lunch at Cheesecake Factory! YUMMY! She also brought balloons and other stuff with her. Thank you so much Lori! I am so thankful God brought you into our lives, not just because of all the things you do for us – and you do a LOT – but also for your friendship. Our nurse hurt her back and wasn’t able to be at work Monday, but she was back for Tuesday and also brought some very nice gifts for me. Thank you Robin – you are more than just Dillon’s nurse to us! My sweet husby brought home a dozen white roses for me! Thank you so much Honey, I love you!

June 23, 2009 – Dillon had two appointments at CHOP. GI went well – the doctor is fine with not putting Dillon on reflux drugs since we don’t know if he even has it. He doesn’t like that Dillon is throwing up some – but feels it is not often enough to consider the MAJOR surgery to fix his nissen. Audiology was an very good visit. We learned that Dillon’s left ear tube is functioning properly, but his right tube is not. It is either clogged or working its way out. She tested Dillon’s hearing anyways. During the test I had to hold Dillon so his breathing was as quiet as possible so as not to interfere with the test. The test sends tones in at different frequencies and measures the energy put off by the hairs in the ears to know if he is hearing or not. During the left ear, Dillon was cooing for the majority of the test, then he stopped and was quiet for the rest. She told me the test showed he was hearing 3 of the 4 tones, and it was the last one that he was not hearing. So I am pretty sure he was cooing when he was hearing!!!! Then on the right ear (with the tube not working right) he was quiet during most of the test and only cooed at the end. This test showed he did not hear the first three tones but that he did hear the last one. Dillon has never responded during a hearing test like this before!!!! This is a huge blessing! Of course, he is still not always responding to sounds, but if he did it once he can do it again! So please keep praying for his hearing!

June 24, 2009 – Two more appointments at CHOP. Seating clinic where they are going to start trying to get my insurance to pay for a stander, a chair, and a bath chair for Dillon since I have failed at getting them to do so. We’ll see…. He also had urology appointment. GRRR! Over two years ago I asked a couple doctors if the two bulges in Dillon’s lower stomach when he coughs were hernias. I was pretty much laughed off. I was told no. Even when I suggested that his nonstop coughing may be the cause. Well guess what? Dillon has two hernias that need to be stitched closed. He also needs some other urology surgery, but the doctor assured me he is not in pain and there is no rush for this surgery. So they are going to talk with ENT and try to schedule this surgery at the same time as Dillon’s next ear tubes/tonsil removal surgery. (Have I told you his tonsils were taken out right before he turned one and it grew back already? It is taking up half his throat again. And he doesn’t have any room to spare!)

And that bring us to today. Tomorrow is June 29, 2009 – JayDonn’s SECOND birthday! Happy Birthday my little man! JayDonn is almost fully potty trained. He doesn’t wear diapers when we go out of the house or anything. He only wears them at night. We have even stopped using them for nap times. He is such an amazing little man. He is such a big help to me. A few months ago he had over 100 words, so I can’t imagine how many he has now. He uses sentences, and is so good about saying “thank you Mommy” or “Thank you Robin” He even says “Bless you Mommy” every time I sneeze. JayDonn’s favorite toys are his “emals” (animals). He loves the little animals and ark my parents got him and plays with it every day. In fact he drives us crazy with it every day! :-) I am sure he will be left handed as he is still using his left for everything he does. Every night when I tell him it is bed time he gives Daddy, Dillon and Mommy hugs and kisses then we go upstairs and he reminds me “teeth!” Then we go upstairs and he tells me “diaper” and then “pray”. We kneel by his bed and pray and he says “amen!” then he give me “hug and kiss” and goes to sleep. In the morning, if I don’t have the gate across his room, he will come down from his third floor bedroom and say “Hello Mommy! Robin!” If JayDonn doesn’t want to do what I tell him I will say “Obey Mommy.” Then he will repeat it and then *usually* do what ever it was I asked him to do. Sometimes he sings “Obey Mommy! Obey Mommy!” for no reason….other than I think he hears it a lot! :-) Here is a video of Jay saying his Bible verse Click Here

JayDonn – you are a precious little boy. You bring so much joy into my life. I love you so much. I thank the Lord everyday for giving you to me. I can’t wait to watch you grow up into a wonderful man! Keep your sweet heart for your brother and others.


Papa and Mama K. said...

Praise the Lord for Dillon and JayDonn and how God has blessed you, Josiah and Tiffany. Happy birthday, Jay. Love you,
Papa and Mama K.

QuiltingB29 said...

That video of JayDonn is so cute. He is such a blessing. I'll be praying for Dillon.
In Christ,

Grandpa dnd Grandma Schnarr said...

Dear JayDonn,

Happy Happy Birthday!!! We love you, and you aer a special light in a dark world sometimes.
Dillon you're a fighter keep up the good work.We love you too!!
Josiah thanks for being the leader, and loving your family unconidtionally!
Tiff, happy birthday again, I told you JayDonn was just like you, he is starting to get your tenderheart! Keep up the good work with both boys. Remind JayDonn more "emals" are on there way!!!
We Love you All,

No No Nanette said...

I just love when they start talking - it only gets more and more fun. Jay is such a cutie!

Hope you have a great week, Tiffany.