Pictures!

Besides the food on his face, isn't he beautiful?!

Daddy and Dillon. I love this picture!

Jay was leaning out of my arms and into Daddy's. Daddy says he is smart and knows that Daddy can get him higher in the air.

My little boy is growing up so fast!

Here he is being silly and drinking from his sippy cup.

Before Jay...

...After Jay!

He is pulling himself up to standing. He likes to play with his potty chair. Today we have started potty training. Yes, I know I am crazy, yes I know he is young, yes I know it will be hard....but we are determined to try any ways. I'll let you know how it goes.

Daddy loves to hold his Dillon. Dillon has been having a very hard time keeping his Oxygen levels up, but we think we have found the cause. His one medicine that he has been on for a while seems to cause his O2 levels to drop within an hour every time I give it to him so we have stopped giving it. Instead we are using homeopathic remedies to help.

I just missed getting the picture of him holding the ball up in the air! He throws up all over himself so much it is hard to keep him in clean clothes. I am sure all you who have kids or have babysat a lot understand that!

This is the first video we have of Jay Creeping (what most people call crawling, where he is on hands and knees.) Josiah is playing the piano in the background.

A good video

Josiah came across this good video. It is about three people who live in wheelchairs. It is not meant to say 'pity me" it is meant to give understanding to others as to what life is really like. It is sort of long, but it is broken into three chapters. It really was enlightening!

The video: Rolling

Chapter 1 (21:25)

Chapter 2 (19:10)

Chapter 3 (14:56)

Sitting!!!

JayDonn was laying on the floor playing with a toy until I turned my back for just a few seconds. When I looked again he was sitting! These are the pictures I took right away so they are his first time sitting on his own. He must have sat for a good 5 minutes (part of it he was leaning over and using his hands, but still!)

Sorry it is blurry, it would have been such a good picture so I decided to put it on any ways.

He's growing up so fast! Jay is such a blessing. He makes me laugh all the time. If I need to laugh I just pretend to sneeze or make a monkey sound and he smiles so big it brightens my day. I love you JayDonn!

Congratualtions Liz!

I just read on my dear blogging-friend's blog that she is expecting her 5th child! She has a son who has similar disabilities as Dillon (her 3rd child). If you haven't ever checked out her blog, you should!
Liz's blog
Ezra's blog

Now if you go to her blog, make sure you pray for their family!

Congratulations Liz!

Saturday for Self

Friday night and Saturday Josiah gave me off! He suctioned, fed, gave medicine, played with, changed all diapers, and did Dillon's Home school program. It was so nice! I went out to the health food store, then I went to Christopher's and Banks to get Mrs. Y a get well present (I found a nice blue skirt for her). I also got myself a new skirt (brown)! Then I spent the rest of the day enjoying a wonderful time of fellowship at Mrs Y's house. It was a break I needed. I love my husband so much. He did a wonderful job with the boys. He did all of Dillon's program and even a little more. Did I mention that it was WONDERFUL to have a break?!

I did want to say Happy Birthday to my sister. Her birthday was Saturday (And so is our Aunt's...I tried to email you but I must have the wrong email address)

Happy Birthday to you both!

I don't think I have told you, Dillon has two more teeth - he is up to 6 now. He got the other two about 2-3 weeks ago now.

Here is a poem I saw:

I Asked God

I asked God to take away my pain.
God said, No.
It is not for me to take away,
but for you to give it up.

I asked God to make my handicapped child whole.
God said, No.
His spirit is whole,
his body is only temporary.

I asked God to grant me patience.
God said, No.
Patience is a by-product of tribulations;
it isn't granted, it is learned.

I asked God to give me happiness.
God said, No.
I give you blessings.
Happiness is up to you.

I asked God to spare me pain.
God said, No.
Suffering draws you apart from worldly cares and brings
you closer to me.

I asked God to make my spirit grow.
God said, No.
You must grow on your own,
but I will prune you to make you fruitful.

I asked God for all things that I might enjoy life.
God said, No.
I will give you life,
so that you may enjoy all things.

I ask God to help me love others, as much as He loves me.
God said...Ahhhh, finally you have the idea.

I thought that was pretty good and wanted to share it with you. Dillon has been having a lot of trouble with breathing. I am pretty sure his drug to dry up his secretions is behind the problems so I am not giving it to him anymore. I have to see how he does without it to see if it is in deed the cause. I HATE how doctors put you on a drug for problem A and that drug causes problems B and C so you have to go on another drug to treat B and C and then that new drug causes side effects D, E, and F, etc. My goal is to treat Dillon with the most natural, safest remedies possible. Thank you for praying. I don't like always ending my posts with a prayer request - but I know the people who read this will be praying anyways so I might as well give you the specific things to pray for. I hope people know we do not take your prayers lightly...

1. Nurses! We still need nurses 4 days a week.
2. Strength in breathing for Dillon
3. Wisdom as we figure out what is causing the problems
4. Wisdom in knowing the best treatment methods for Dillon (drugs, homeopathic remedies, etc.)
   

"For what is your life?"

Strange title? Not really. What is your life? Is it about pleasing self? Is it about trying to get a high paying job? Do you live it like it is guaranteed? Like tomorrow is a promise? Now be honest, who reading this doesn't live as though tomorrow will come? I do. I make plans for tomorrow, for next week, even for several months away.
Here's what got me thinking about this...
It's Friday and Tiffany receives a phone call on her cell phone. It is a friend of Josiah and Tiffany's from church inviting them over for dinner that night. After checking with her husband, the plans are confirmed. They arrive about 7:30pm and have a wonderful night with several others from church. It was the first night in a long long time that they had been out. Dillon had done great the whole night. He spent a lot of it in Daddy's arms and was alert with hardly any coughing. They left about midnight. Tiffany was walking with JayDonn to the car. Taking great care when she was about to step on a little bit of snow, she didn't look to see the next step would be a step down. She twisted her ankle pretty bad, she even had to be helped to the car. Later that night, after everyone was in bed, Dillon's machine started beeping. Since Tiffany's ankle hurt she tried to wake her husband to help Dillon. Unfortunately, he was in a deep sleep since he is exhausted from hardly ever getting to sleep a full night. After about a minute she decided to get up herself. As she approached the doorway into Dillon's room she could see his oxygen level - it was down to 42%!!! By the time she got to his side it had continued to plummet to 40%. These levels are low enough to kill and at the very least cause significant more brain damage. Tiffany jumped into action, suctioning, repositioning and of course starting oxygen. Dillon started to gradually come back up to normal levels. Needless to say, Tiffany did not get much sleep the rest of the night as she was constantly worrying that it would happen again and thinking of what almost happened that night.

There you go, that's what happened. It has been a week since it happened. I didn't write about it at first because I wasn't sure I wanted to. Then I thought about it and I knew I needed to let people know. First, to say thank you for praying for Dillon. Second, to say Dillon is not stable, he needs you to continue to pray faithfully for him. Third, to use what happened to remind people that life is short, and we never know just how short our life may be until it is too late.

James 4:14 Whereas ye know not what shall be on the morrow. For what is your life? It is even a vapour, that appeareth for a little time, and then vanisheth away.

God took care of our little boy last Friday night, but none of us are promised a tomorrow. Dillon's life is in danger every night, especially every night that we don't have a nurse who can help prevent him from getting to such dangerous levels. Do we realize, though, that our life could be taken as easily as Dillon's? A car accident on the way home from church, a health problem that we didn't even know we had, an accident at work or around the house, anything could happen. Would you be ready if something happened to you? Would you be ready to stand before God?

I thank the Lord that He did take care of Dillon, I can't even imagine what I would do if something happened to him. It is only through Him that Dillon did not suffer consequences of his oxygen dropping so low. And, I thank everyone who prays. So many times in Dillon's life he "shouldn't have lived". From the moment he was born it is a miracle he is alive. Thank you again for praying - never forget that God hears the prayers of His children - Dillon is LIVING proof that He hears you.

Happy Birthday Anne

HAPPY BIRTHDAY ANNE!
Thank you for being such a dear friend. I am so glad Bro. George asked you to come pick me up. :-)I'm sorry we couldn't do something this Saturday - you have to pick the date when you aren't busy (haha I know but pick one any way!) So we can plan to go to Lancaster, or New York or something.... ~Tiff~

HAPPY BIRTHDAY AUNTY ANNE! I wanted to say Happy Birthday to you too and thank you for being there for my Mommy. It has been a hard year and a half, but she knows if she needs a friend that you are always there. Thank you for praying for me too! ~Dillon~

HAPPY BIRTHDAY AUNTY ANNE! Aren't you glad I will finally look at you! I decided you look like my Mommy but you aren't trying to trick me so I thought it would be ok to look at you now! ~JayDonn~

Have a great day Anne!

My Three Men!

I love the men in my life. God has blessed me with the best three men I could ask for. I wanted to take a moment to "brag" on them! (No, but really I wanted to tell the world how wonderful each of them are and what they mean to me!)

JayDonn: God gave us this little boy when we weren't expecting it. I worried that it wasn't the right time, but I should have known - God knows best. It was the right time. Jay is the light in our lives. When my days are long and tedious, he changes things up by doing something new and or crazy. When I am sad and just down, he makes me laugh. He has this way about him. He never stops laughing and smiling. He learns so much everyday, I never knew how smart babies are. I know I am being watched and I want to set a good example for him. I love him so much! Look at these pictures, how could any not feel happier having him in their life?


Dillon:Dillon is my hidden blessing. It often seems like a burden, and it is. But he is also the biggest blessing. He reminds me to be grateful for the simple things in life. He reminds me not to take things for granted. He reminds me that God is in control of life and all the details of our life. Through Dillon I have learned I can pray over the "little silly" things of life. I can ask God for the simple and I can ask God for the impossible! I said recently that a part of me died when Dillon was born, the part that could laugh at the drop of a hat and be full of energy. It is true, but a new part of me was born that day too. A part that has more compassion for people, a part that is learning to trust God more and more. I don't know what I would do if I didn't have my little Dillon Boy in my life. I love Dillon, he works so hard to try to get better!

Josiah:God gave me the best husband there is! I don't know of another man who would be the Daddy that our boys, especially Dillon, needs. It is easy to be a Daddy, it is easy to train a child, to play with them, to teach them. It is easy to go to the store with a child, to go on vacation, to go to church with a child. It is another thing to love a child so unconditionally that you don't let their problems even effect your love or your actions. Nothing is easy with Dillon, yet Josiah does all those things with him. Many Dads wouldn't have wanted to fly across the country with a child like Dillon. Not only is it a ton of work but it draws a ton of attention. Josiah is great with the boys. He loves to play with Jay and talk to him and fly him in the air. But he also loves to hold Dillon and whisper in his ear. He tells Dillon how much he loves him. Josiah supports me and helps me with everything. He helps with the house work and usually does all the shopping and a lot of the laundry. He is never hard on me for not being able to keep up with everything. He is a wonderful man! I love you Josiah, thank you for being my husband!





(Special Thanks: I wanted to say thank you too to Mrs. G for coming to our house for a couple of days to help me. Thank you for taking your time to learn about Dillon's care and what his life is all about. We appreciated your help very much!!)

Texas Trip Pictures

I am finally getting some pictures on from our Texas trip. It was a lot of fun. Corpus Christi was beautiful, the weather was great, the ocean was so close - who could ask for more? The pictures aren't all in order, but that doesn't matter. (I tried putting this on days ago but blogger wasn't working...sorry it took so long!)Jay's First Christmas!!
Dillon's Second Christmas!!
Grandpa and Grandma Rogers on the beech with us
Josiah took these on sand dunes, right beside us was burned in a fire the day before this. We think we saw the truck that caused the fire. Something to do with fireworks, about 1,00 acres burned!
It was amazing to see all the sand dunes
JayDonn and his great grandpa
Josiah and Ezra before the wedding
Gina, Hannah and Mom
Gina and all her girls
The family. I put my camera down for the one with Dillon, Jay and I and forgot to ask someone to take the picture. I need to get it from someone else!

Reenacting the ring part of the ceremony A kiss before they left the reception


Our family!Josiah and I in front of a tree that was decorated with pictures of Ez & Gina and their families and friends
Josiah and his not so little sister! You looked beautiful Hannah!
At Gina's parent's house
Hannah said we didn't have any pictures that were just her and I so we had to get some
This is Gina's horse. It was really nice of them to let us ride it.
Grandma K had not been on a horse since she was 18!
Jay enjoyed the sunny weather, but enjoyed being held more!
New Year's Eve the four of us went driving around and stopped at this beautiful place overlooking the ocean.
Isn't he sweet!
Okay - so he wasn't so happy in this picture but it is so cute! I love my boys with all my heart!
My beautiful Dillon Boy!
Grandma K on the floor playing with Jay.
San Antonio before we flew home
At the Alamo
This was in Mexico on New Year's Day
I took Jay in the pool at the hotel where some of the family stayed. He really liked it. I was taking him under water and everything. If I had a pool I think he would swim in a week!
My Jay, sucking his thumb







I was pretending to sneeze and Jay thought it was soooo funny




This was Jay's second day of crawling. He started On Sunday Jan 6th (If I remember right) because my mom sent him a new teddy bear that lights up. However, I wouldn't give it to him - I put it about 5 feel away and he wanted it bad enough that he was able to get to it!



Update: Dillon's doctor is very nice he is trying to help us get the insurance to pay to take Dillon to the Institutes! That would be great! JayDonn is sick right now, he is still happy and full of energy but he isn't sleeping well and has a runny nose and a cough. He also has some fluid in both ears.

Merry Christmas!

Well, another Christmas has come and gone. We are in Corpus Christi Texas right now. Josiah's brother is getting married on the 29th. The boys did very good on the plane ride here on Monday. I couldn't have asked for them to be any better. Josiah and I love it here in Texas. The weather is so beautiful (right now) - it was the only time I have been in 75 degree weather for Christmas. We spent the day with our soon to be sister in law and her family. They were very sweet and made us all feel like part of the family. Josiah, Ezra, Gina, Daniel, and I went for a walk around Gina's parents property and saw a snake! It wasn't a rattler like we thought at first.
I'll try to get pictures up when we get home - just wanted to say Merry Christmas to ya'll!!

Riddle

What is totally disgusting and most precious at the same time?






Answer: Kisses from Jay! He soaks my face with slobber but it is so sweet!

What an encouragement!

Tonight at church was our cantata (very well done - I might add!) so we weren't sure who was on the list to take care of Dillon but we decided to keep him up with us so nobody would have to miss it. He was doing very well other than snoring. We decided to lay him on the floor (yes, we put him on blankets) on his tummy. Near the end of the cantata he started lifting his head. He kept lifting and putting it down for about 10 minutes. He also moved about 6 inches to the side. His lower body didn't move, on;y his upper body but at least he was moving!! What an encouragement! I think God is showing me small things to make sure I don't give up. Keep praying!! Keep praying for Dillon and for me to be consistent. Also, we are trying to find someone we can hire to help me with house work. After Christmas we want to increase the amount of time we do the program to help him improve as fast as possible. If you could please pray we can find somebody soon.

Thank you so much for praying!
God hears your prayers - and answers!

Just so you know - we have not seen him do this for 6 months! Very rarely he has lifted his head once or twice at a time in the last 6 months but he has not done it for 10 minutes like he did tonight. This is a big blessing - I had tears in my eyes when I started to believe he was actually doing it (meaning it wasn't a seizure).

Home School Day 3

I have survived the first two days and am now on the third! It is a lot of work, but the rewards will make it all worth while! Here is a blessing, the Lord is already using our work to help Dillon in small ways: Today I saw Dillon's eyes go from the top on his head down when I had the lights off and a small flash light shining on my hand. Do I think he saw it? I think he saw something anyways! Will it happen every time now? NO - BUT each time it happens it is strengthening his visual pathway. I also put him on the inclined floor (I call it a ramp for future reference) this morning. I have been putting him on it 8 times a day. This morning he actually moved his left arm to get down it!!! His hand was upside down (on the back of the hand rather than the palm, but who cares - he moved!) Will he do this every time now? NO but every time he does he is learning that he can move himself.

I want to share the blessings we see as we see them. I also want everyone to understand that some days will not be good, other days may be great. This is just how it is going to be. It is going to be a long, slow, hard road. But if at the end, Dillon can see and/or communicate and/or move and/or stop having seizure etc Don't you agree it will be worth it? :-)

Thank you for praying! I know people are praying for us everyday and that is amazing. I am the one here working with Dillon all day - but every one who prays for Dillon to make progress has a part in this. The Institutes said other siblings don't mind helping because they understand they are helping to save their brother's life. They understand it is such an important task and they usually are quite proud of the fact that they get to help. God is in control of all of this, but your prayers play such a big part in it!!


Please pray for:

1. Dillon to make as much progress as he can

2. Strength for Josiah and I to be consistent with the schooling (7 days a week, including the Christmas holiday time)

3. Nurses for at night so I can get the sleep I need to do the school

4. THAT GOD WOULD BE GLORIFIED IN DILLON'S LIFE (AND OURS!)

Teeth!

I forgot! JayDonn cut his first tooth on Thanksgiving. My mom put her finger in his mouth and said he had a tooth. I didn't believe her, but sure enough there it was. He was 4 months 3 weeks old. About 2 days later he cut the second one. These are the bottom two.
I didn't even know he was cutting teeth - the Lord really blessed us in that he was not irritable.

My little baby is already 5.5 months old with two teeth! Where does the time go??!!

It's been a while...

I know it has been a while since I last wrote so I will try to update quickly. Right after my last post Dillon had to be taken by ambulance to the hospital. He had a 15 minute long seizure in the middle of the night and another one at 11 am. We were then taken to CHOP and stayed there for 3 days. He had pneumonia. The doctors thought he would have to have surgery to tighten his stomach as they thought it was caused by his food refluxing.
Thanksgiving was great. We had some trouble with our O2 concentrator on the way out, but other than that, no major problems. Dillon was having a hard time with breathing. He was on oxygen 95% of the time. We got to see my brother-in-law get ordained as a Pastor. And of course I held my nephew. He was so tiny it felt like I wasn't holding anything at all! Josiah's parents and sister also came to Ohio for a two days. It was a good time to see family!
After we got home, I took Dillon to CHOP for the Upper GI (to see if he was refluxing food) and Dillon's oxygen level dropped. They started yelling for a nurse and needless to say we ended up in the ICU again. This time I told them I thought his new seizure drug was making him so tired that he couldn't breath. They took him off of it and he has been doing much better. We also took him off one of his reflux medicines since the upper GI showed he was not refluxing and since the doctor said it could be causing seizures. His breathing is much better and his seizures have decreased.
Last week we went to classes at The Institutes for the Achievement of Human Potential, which is right outside of Philly. All I can say is WOW!!! Josiah and I learned so much. We finally have some "tools" in our "toolbox" to try to use to help Dillon. No body has given us anything to do to try to help him, doctors think there is nothing you can do to help a brain injury. Thank you to Mom K, Hannah, Mrs. Y, and Anne for babysitting for those long days!

I have started our new program with Dillon today. It seems to take me about 45 minutes every other hour from 9am-7pm. We will adjust this as it seems best, but this is where I am starting. Only 7% of the time do they see no significant improvement (usually there is some improvement, but not enough to be significant). 26% of the time the child becomes completely well!!!! God is in control, He knows if this will work or not. Josiah and I are going to really work this for 6 months to see if it helps. It really brings the family together even more as it requires all of us to work together if we are going to have a chance at changing Dillon's life forever! Please pray for strength and consistency for us and for improvement with Dillon. We have to do this 7 days a week, we cannot take breaks or it will only make it so much harder for Dillon. Think of it as working up to running 10 miles. If you work everyday it gets easier and easier, but if you take weekends off Monday it is so much harder again. We will also have to continue it over Christmas break. I won't go into too many details here on what it is we are doing, but if you want to know please ask me. Basically we stimulate Dillon on every level neurologically he is at and work towards the next level. If you have a brain injured child (anything from can't read, to eyes not being straight, to as severe as Dillon) please contact me about these Institutes. According to how they taught us to evaluate our child, Dillon is 100% injured. He is functioning at less than newborn, or 0% of where he should be. What they have taught us is amazing - it just makes sense. They have helped so many people. Praise the Lord for the incredible minds he gave them to learn these things! There were parents from 13 states, and 5 continents there, we were able to give out many of "Dillon's Journey". Please pray God would use us in their lives.
This is Glenn Doman, the founder of the Institues (we handed him Dillon's story and he started to read it), his son Douglas and daughter Janet and his wife Katie (standing). Please pray God would use Dillon's story. Dr. Doman is 88 years old!

Please respond!

I am going to make my blog private so only people I approve of can read it. If you read my blog and would like to continue to be able to read it - please email me your name. I will then add your email to the list of approved people. Please email me at this address only: kuenzijosiah@hotmail.com


(Oh by the way - Dillon got his third tooth this week. His top right one is in!!)

Catching Up

I haven't been very good at keeping up with my blog. I'll try to remember the important things going on in our life:

--> Thank you to my Mom-in-law for organizing help for us during church services. They came up to visit last weekend while we trained ladies in Dillon's care. It was Hannah's birthday on Saturday - so Happy Birthday again Aunty Hannah!

--> Thank you to all the ladies at church who are willing to learn and help us in such a huge way! I know some of the ladies are scared, but Dillon really isn't all that scary! lol I understand people being afraid, but it isn't so bad. Josiah and I have been to the point of saying "why even go to Church?" since we are out with the boys all the time and never even sit in the service but rather in the foyer so we can care for Dillon. You ladies may not even know how much of a blessing you are being by helping!!!


--> Dillon is on the highest does of Topamax, starting today, that the doctor wants him to go on. He is still having seizures and is very very limp and dazed from it. The doctor wants to know on Tuesday if Dillon doesn't start to get more energy and/or if he is still having the seizures.


--> We are scheduled for the out-patient appointment on Nov 30 for the diet. We will then schedule the admission and pray this diet will work and we can get him off of seizure medicines!


--> Dillon and JayDonn went to the doctor yesterday. It was supposed to be a well visit, but Dillon still had junky stuff in his eyes even though I had been putting medicine in them. The doctor gave me a new medicine and his eyes look much better today. Josiah and I have been sick all week as well. Dillon is 21lb 2oz and JayDonn is 13lb 14oz.


--> Sunday night our nurse called in that she would be 30 minutes late, she was 70 minutes late. Monday the nurse was 45 minutes late because the office never told her that Dillon's hours now start at 10. Wednesday the nurse no-called no-showed (I think there was another miscommunication between the nurses and the office!). Thursday our nurse called in sick and they couldn't find a replacement. And now Friday the other nurse called in sick and we don't have a replacement! What a week. Dillon has been doing okay at night for me, we are getting about 4 hours of sleep until he starts to need help. But since we are both sick 4 hours isn't a lot.


--> Josiah and I have signed up for the classes taught by the author of the book I told you about "What to do about your brain injured child". The classes are December 3-7. Please pray for this. I really feel like if God is going to allow anything to work this will be it. They have huge success rates with brain injured kids, but they also have some that they just can't help. I told Josiah - if this doesn't work I am giving up. By this I mean, I will come to the point of saying God doesn't want Dillon to change. He wants to use him as he is. I will stop actively pursing therapies for him. I will learn to just have fun with Dillon without trying to change him and "fix" him. It will take six months of really hard work on my part to give this a honest chance, but if at the end of six months, if we don't see a change I don't think it will come. Please pray that God might use Josiah and I in Dillon's life, working constantly with him, to help him. And pray - that if it isn't His will for Dillon to improve, that He will give me the strength to accept this and be content with the wonderful child Dillon is.

Video of Josiah feeding JayDonn his first cereal last night: Jay's Cereal
Video of JayDonn cooing: Jay's Coos

A Must See!

Alright, my last post was that I didn't feel like taking the time to upload videos, but this one is a must see! Sorry that JayDonn was almost out of the video shot, I ws holding the camera while hiding behind a book. We were playing peek-a-boo and JayDonn was laughing. Make sure you have you volume on for this one!

JayDonn Laughing!