Inside Dillon's Mind

Hi Everybody!
Sometimes I have bad days, I try to tell Mommy what is wrong but she just can't understand my language. I really have no language to tell her, oh how I wish I could let Mommy know what I need.
Yesterday was a bad day for me. I got constipated again. If only I could tell Mommy that she needs to give me the fish oil again. She doesn't realize that the powder Omega 3's aren't the same for my body as that good fish oil - even though it does stink awful bad! Daddy had bought the powder and asked Mommy to make sure she uses it before it goes bad so Mommy has been adding that to my food instead. My seizures are bad now too, if only I could talk to Mommy and tell her that the seizures started after I had been off the fish oil for several days. My brain needs the fish oil to help it function properly.
My nurse is named Miss Barb, she is really nice to me. She cheers for me and talks to me, she knows that I can understand her and that I know my Mommy. She even says I understand more of what is going on than Mommy! (I understand Mommy just doesn't want to hope too high, but I like Miss Barb)
So anyways, back to yesterday...Mommy and Miss Barb were patterning me when I really needed to have a bowel movement, but I just couldn't I even started bleeding because it was so hard. It really hurt my stomach, I needed to go but it was too painful! Miss Barb tried giving me some things to help me go and Mommy had already given me some mineral oil, but nothing was working.
My speech therapist, Miss Sue, came. She put some really cold things in my mouth and then cheered when I tried to make a face to tell her to stop! Why do they think that is good? I just don't understand why they put cold stuff in my mouth!
Then my Physical therapist came, Miss Susan. She started to work with me (why doesn't she get the point that I always fall asleep when she is here because I don't want to do anything!?) and I went into another violent seizure. I don't like my seizures, I can't understand what is going on around me when I am in it, I can't stop my arms from jerking in the air. I can't stop my head from being thrown backwards. I can't stop my tongue from sticking out and worse of all, I get so tired afterwards. But this time, as soon as the seizure stopped I vomited ALL my food. This was the most I had ever thrown up. The doctors tell Mommy I can't throw up. I wonder if they would like me to throw up on them next time I am there? Hummm....I'll have to remember that! Next time one of them talks like I am dumb and don't understand I am going to throw up on him! So after I vomited and really scared everybody, I finally was able to have a bowel movement, but it hurt so bad I got a hemroid! Then my oxygen levels dropped. I was really tired and in a lot of pain, I just didn't feel like breathing anymore. Mommy, Miss Barb, and Miss Susan thought I got food in my lungs when I threw up but Miss Barb listened to my lungs and didn't think so. I was just too tired to breathe. After a few minutes everyone calmed down when I started breathing deeply again.
The rest of the evening I was pretty tired. I slept really good for Mrs H at church then Mommy and Daddy got a bite to eat at Wendy's with some friends. I had another bad seizure there. I don't like being there with everyone looking at me. It is hard to get my wheel chair out so Daddy just put a towel on the table and I rested there. Jay got to sit in a high chair and eat food, all I can do is lay still on the table and listen to everyone talk and laugh.
I am so thankful God helped Mommy to finally understand that she should put me back on the fish oil because since she gave it to me last night I have not had a single one of my strong seizures!! I know people are praying for me, and I really hope these seizures will stop so I can learn to see and hear and move! Most of all, I want to be able to communicate with my Daddy, Mommy, little Brother (I want to tell him to be nice to me and quit crawling all over me!!) and all those who love me and talk to me like I am a real person!
Well I am signing off now before someone catches me on the computer! Bye!
Love,
Dillon

Inclined Floor

The car sold to pay for this, the sofa, love seat and dining room table were sold to make room for it...Here is piece one of the two pieces of equipment we ordered for Dillon!

This is the Inclined Floor:

After getting it out of the box we started putting it together. Dillon sat by and waited for us to finish!

The man who built it for us had a grandchild with CP so he does this to help other parents out. It saved SO much time as it would have been so hard to try to make all these cuts and angles just right!
It actually didn't take too long at all since he labled all the parts and gave us good directions
All done!
Daddy having fun after working hard
Dillon on the inclined floor!

Look at him go!

JayDonn thought it was pretty neat too...

He climbed all the way up!

Seizure

Here's a little of what we have to watch. This is one of Dillon's seizures from tonight. These last several minutes. Not to say pity me, but to show the facts of what medical malpractice can do to an otherwise healthy child. We are praying about what to do and how to best care for him. I am not going to go into all the reasons why do do not believe drugs will help him, that is another blog for another time. Just watch this and be able to better pray. Thanks!

Dillon Prayer Request

Dillon has been having a LOT of violent seizures since Sat night. We thought we found the cause and took care of it but they have started up again. Please pray we will have real wisdom from God to know the cause of these increased seizures so we will not have to put him back on the horrible seizure drugs! We need to find a cause and solution soon as it has been several days of 10-15 minutes long bad seizures!

My homeopathic things do not seem to be working any more I only have a few others I can try.

As you can imagine I am worried about Dillon, depressed to be taking more steps back, concerned about having to drug him again, etc. I feel like they are asking me to give my son heroin, of course it isn't but to me it is just as bad! My mom shared this chapter with me:

Psalm 62

[1] Truly my soul waiteth upon God: from him cometh my salvation.

[2] He only is my rock and my salvation; he is my defence; I shall not be greatly moved.

[3] How long will ye imagine mischief against a man? ye shall be slain all of you: as a bowing wall shall ye be, and as a tottering fence.

[4] They only consult to cast him down from his excellency: they delight in lies: they bless with their mouth, but they curse inwardly. Selah.

[5] My soul, wait thou only upon God; for my expectation is from him.

[6] He only is my rock and my salvation: he is my defence; I shall not be moved.

[7] In God is my salvation and my glory: the rock of my strength, and my refuge, is in God.

[8] Trust in him at all times; ye people, pour out your heart before him: God is a refuge for us. Selah.

[9] Surely men of low degree are vanity, and men of high degree are a lie: to be laid in the balance, they are altogether lighter than vanity.

[10] Trust not in oppression, and become not vain in robbery: if riches increase, set not your heart upon them.

[11] God hath spoken once; twice have I heard this; that power belongeth unto God.

[12] Also unto thee, O Lord, belongeth mercy: for thou renderest to every man according to his work.

The Sweetest Huband in the Whole World!

I have the sweetest husband in the whole world! Today out of the blue he sent me flowers! For no reason other than he was thinking of me and wanted to be sweet. Here are some pics of the flowers.

Aren't they beautiful?!
They smell really nice too!
THAK YOU JOSIAH! I LOVE YOU WITH ALL MY HEART!!

Other pics:

Jay's first time on grass at Grandpa and Grandma Y's, he wasn't too thrilled!

He was much happier to play when Grandpa Y brought him out a blanket and some toys!

Playing away, enjoying the weather...
...and the fellowship!


Jay was helping Ms Barb fold laundry

A night of fellowship with George and Kristen Hammett and others (here is Johanna and Caleb with Dillon)
Bro. George with his daughter Anna and son Joel and Brian (Mrs. Y's son in law) with Jay. I meant to get more pics, but forgot at the night went on!

More wonderful videos

How to entertain a nine month old? I am not sure, Jay sleeps a lot because he is bored. So the other day we got this tub out. He played with it then he played in it!

I forgot to share - Jay has had his third tooth for a couple weeks now - see it in this picture?

Sorry these are small, but it is a reminder of where Dillon started from.... God is so good. He is helping Dillon so much. This little boy was not supposed to live according to the NICU doctors. If he lived they didn't think he would ever be able to do anything other than MAYBE express if he was happy or upset. In these pictures, Dillon had never moved a muscle on his own.

This one was taken on my 21st birthday, I found out later that my mom asked the doctors if they thought Dillon was going to live. Since they all said, No he isn't going to live, she begged them to let me hold him while he was still alive. So the only reason they let me was because they thought he was going to die within a few days anyways!

Look at him after not even two years....!!!
He is chubby, thick legs and chunky cheeks. He is lifting his head and trying to move his feet to push him forward, we know he can see sometimes, we know he can hear my voice sometimes, we think sometime he might be swallowing a little






This is Dillon holding his head up for a long time...

This is JayDonn's first time walking with the toy Grandpa and Grandma S bought him.

God is Good!

Friday night I was in tears. Josiah was not home from the Men's meeting at church and Dillon went into a violent seizure (I had lost my homeopathic remedies so he didn't have any since Wed. I found them on Sat. and have been giving them to him again). I held my baby in my arms and cried out to God. I wanted God to take Dillon home so he wouldn't have to go through all of this. I would rather go through the pain of losing him and know he is whole and healthy in Heaven with His Creator then to watch him suffer from such violent seizures.

Well, today God reminded me that His way is better, that He isn't done working in Dillon's life!

As of now, at 2:30pm, we have only suctioned Dillon 1 time today. His oxygen levels have been good all day. We have been patterning him, he is handling his food wonderfully. It has been a good day. But God knew I needed more encouragement....

Okay - who can tell the NEW good thing in this picture? Study it closely without looking at the next picture...

Give up? Or do you think you got the right answer? We'll see....

Dillon's hands are open!!! They are NEVER open when he is lifting his head!!

This is the first time Dillon has EVER weight shifted. His physical therapist is balancing him, but Dillon is holding his body weight, keeping his head up, staying on his knees, and all the while she was rocking him forward and backwards to shift the weight from arms to legs!!

This one shows how little effort it was on Susan's part and how much it was Dillon doing the work!

Then he was TIRED of course! Poor baby worked so hard today!

Dillon with his physical therapist on his hands and knees...

Isn't God good?!

New Name Written Down in Glory!

This was emailed to Josiah and I this morning by Josiah's Mom,


Hi Josiah and Tiffany,
I thought you would be interested in reading about a conversation I had today with one of my patients. Jim is an elderly man who has been my patient for about 5 weeks. I see him a couple of days a week and since he has a lot of treatments that I do I see him a good bit. I have struck up several good conversations with him and his wife about God, eternity, etc. I did not think he was saved but never asked him. I had told them about Dillon and gave them his tract about 3 weeks ago or so. This has led to a few discussions. Today Jim found out he needs more surgery so we were talking about life passing quickly, etc and about eternity and his wife spoke up and said, “Jim is saved you know.” I said “Oh, tell me about it, Jim.” He proceeded to tell me that he got saved a few days ago. He told me has been thinking about these things and a pastor came and talked to him about it and he decided to get saved. I then asked his wife if she were saved. She told me had gotten saved a long time ago but had quit going to church but that they were going to start going again. I believe God used Dillon’s tract to help this man think about his soul and eternity. I Cor. 1:26-31.
With love and prayers,
Mom

This would be the first person we know of that Dillon's tract had a part in leading them to Christ! How awesome if Dillon's hurt little body is part of the reason this man will spend eternity in Heaven!

Poems

I thought I would do a series of poems about special needs children. Here is just one I liked:

Mother of A "Special" Child

When I was young, I'd often say, I'd like to be a mom someday
While playing with my baby doll, I thought that jobs not hard at all
I'd have a baby, maybe two, a girl in pink...a boy in blue
Well I grew up and sure enough,
The baby that was sent to me, was born with disabilities
At first I'm frightened through and through, there's much to learn to care for you
This wasn't in my plans at all, when I was young and played with dolls
Your mind and body were so weak, you might not ever walk or speak
So much special care required, I'm often scared and often tired
As months and years go slowly by, I smile a lot but sometimes cry
To watch you grow and not complain, though you endure your share of pain
Oh, how I'd hold you and I'd pray, that you'd be healed and whole someday
But I knew that was not to be, not physically or mentally
And so I taught you best I could, your progress wasn't very good
But then one day I realized, a I gazed into your loving eyes
That I had learned so much from you, determination...courage too
A love so unconditional, it floods my soul and always will
I'm proud to say I gave you birth, for you're an angel here on earth.

I will post more in the coming days, hope you enjoy them. I wanted to keep these so I thought I would share them with ya'll at the same time!