Another trip to the ER

Last Monday, Josiah had the day off work. We went to Lancaster to the Biblical Tabernacle reproduction. It wasn't the greatest trip however. Dillon had been having a terrible time with his oxygen, he was requiring a ton of oxygen to keep him above 90%. Tuesday Josiah took off for some doctor appointments he had, so he also took Dillon into the ER at the advice of his doctor. They gave him a breathing treatment and deep suctioned him (they put a long thin tube down his nose probably 6-8 inches). His was then doing much better so Josiah brought him home. We had to deep suction him 2 more time and give him several more breathing treatments. Praise the Lord he is doing much better yesterday and today. It reminds me that God is in control, my little boy's life is not in my hands, but His. Dillon had been doing well and then all of a sudden he was having a hard time breathing. The worse part is that Dillon seemed so peaceful, if we didn't have the machines we would never have known he was struggling!
Saturday I was able to spend most of the day with Anne, which was really nice. We went out to lunch and then to Sight-and-Sound where we saw the production Daniel. It was very good, and it was nice to spend some time with my good friend! Then Saturday night we went to a "flock meeting" which is where a group of people who are "over-seen" by the same deacon get together to pray for our missionaries and fellowship. It was really nice, we enjoyed the fellowship and it was nice to have a good purpose for getting together. We broke up into groups of 2-3 and spent time praying for the different needs of the missionaries. It was very good, Josiah and I are hoping they do that more often!

I've been doing research to try to find out more of what the Institutes teach as far as helping Dillon and I have come across these sites. Micah Rock and Vegard I am learning a lot from looking at what others do.

BLESSING: We had a nurse start last Tuesday! She will be working Mon-Fri 10pm-6am We still need Sat and Sunday nights, but this is a big start! She adopted a boy with CP, he has a feeding tube, and needs oxygen. He is 17 now, but was 10 when they adopted him. So she knows what it is like to have a child struggle with disability and what it is like having nurses in your house all the time!
PRAYER REQUEST: We need to get Dillon to the Institutes to be seen, which is very expensive (almost $4,000) unless my doctor can get the insurance to cover it. His trouble breathing reminded us, we need to help him in every way possible especially while he is still young so we don't lose the window of opportunity. But then we will need HELP, a LOT of help! Most of the patterning requires minimum of 2 people and has to be done during the whole day every day. The one type is done 2 times a day for an hour each the other is done 12-15 times a day for 5 minutes each. I will need help! If this is something God wants us to do for Dillon we have to trust Him to bring us the help we need. First the finances and second the committed faithful help. I don't think it is humanly possible for me to get this kind of help everyone is busy everyone has a life of their own which is totally understandable- but with God nothing is impossible, right? I know if God's people go to Him on our behalf and ask Him to provide this for Dillon He can, and He will! He is providing the nurses that we have been asking for! Will you pray for this miracle? (And it would be a miracle if we can get the kind of help we will need!) Pray specifically so when God answers you will KNOW He answered! That's what I am going to do any ways!
Let's pray, pray, pray, but then let's watch to see how God will orchestrate the events!

More Adorable Pictures and Videos!!

I can't resist putting all these adorable videos and pictures on! Dillon is doing so well! I love the idea that this is their virtual scrap book... it is cheaper, it doesn't require a lot of supplies, it is easy, it can be seen by everyone, I can access it no matter where I am, I don't have to wait for my photos to be printed, and I can put videos on! What's not to love?

The tulips my Husby bought me have opened up and are so beautiful. He also bought me a bracelet and necklace for Valentine's Day! He is SO sweet!

Grandma S bought Dillon and Jay matching shirts, I didn't get a chance to get a picture of them both in it, but here it is on Dillon. I think Grandma K likes them too!

Dillon's Physical Therapist, Susan, working with Dillon on Wed.

He was actually doing well, normally he likes to totally sleep during her session!

After physical therapy! One tired little boy!

Today! He was doing so well. I can only thank the Lord that he seems to be making some improvements.

Look at him trying so hard....

Jay playing the piano

He was able to sit alone so I decide it is best to teach him like that rather than on my lap

Maybe he will play as good as his Daddy....

Dillon lifting his head today on from the floor

Susan working with Dillon

Jay learning piano

Jay coming for phone

gggGGGGOOOOOOOOO Dillon!!!!

Dillon had a very good day yesterday, let me share with you some of the highlights... (By the way it was day 67 on his program)


Here Dillon is laying on the floor. He actually got his head to midline (centered, rather than laying on one side) and held it there for several minutes. I quickly put this toy that lights up and plays music over him to give him something to look at instead of the ceiling! Now you have to understand, this is a normal position for normal babies, but Dillon almost NEVER does this!

Dillon had done a wonderful job at looking yesterday too. I can't get a picture of that, but his eyes were coming down and focusing on the pictures with a bright light on them. Mrs. B was here cleaning and she even saw his eyes moving more and just over all more alert.

I was asked to come to a ladies meeting last night and share how God saved me, how I met Josiah, and a little about what happened with Dillon. After I shared my story, the Pastor's wife surprised me with these beautiful roses! (and a box of VERY good chocolate!) It was such a blessing to share our story with the ladies.

So when I came home with the roses, my husband went upstairs and brought me down the tulips he bought me a few days ago and hid on the third floor. They were going to be for Valentine's Day but they started opening so he brought them down early. Isn't he sweet?!

I didn't nickname him "Monkey" for no reason! Here he is at 7.5 months old standing. He got himself pretty much up on his own, the toy was leaning so Daddy pulled it back up right but that is all the help he had.

This was the best thing Dillon could do! I put him to bed and he threw up (ok, that part isn't good.) But when I started cleaning him up he started lifting his head a little. So I stayed with him for several minutes helping, then I ran for the camera. A picture is worth a thousand words, so I'll stop talking and let the pictures talk!

And if a picture is worth a thousands words, surely a video clip with worth a trillion words!



Dillon lifting his head again a few minutes later.

Possible Nurse...

There is a nurse who interviewed today with one of our agencies. Please pray she will want the job and that we will like her/she will like us. Our nurse who is currently doing 3 nights is quitting with that agency so we will be losing ALL of our nights next week.

Also, we asked the doctor today if he will help us try to get approved for nursing hours during the day. This way, I could do cleaning while they do Dillon's program and care for him. Do you know how hard that was? God is really teaching me to be humble, to not be so stubborn, to ask for help, to realize that I am not (as Si would say...) "Super-Woman". He is teaching me to let Him bring the solution, His way, and in His time. I asked Si last night why he thought God wasn't providing the nurses. Josiah said "He wants us to depend on Him and not on the nurses." I believe this is all true. There are so many lessons to be learned with every new situation that comes up with Dillon. I have always heard it said, but it means so much more to me now... "It is so amazing how God uses our CHILDREN to teach US!"

I just saw this on Anne's blog and thought it fit with my post so here it is:

"Trust Me, My Child," God says,

"Trust Me with a fuller abandon than you ever have before.

Trust Me, as minute succeeds minute,

Every day of your life, for as long as you live.

And if you become conscious of anything hindering our relationship,

Do not hurt Me by turning away from Me.

Draw all the closer to Me, come, run to Me.
Allow Me to hide you, to protect you, even from yourself.

Tell Me your deepest cares, your every trouble.

Trust Me to keep My Hand upon you.

I will never leave you.

I will shape you, mold you, and perfect you.

Do not fear, O child of My love, do not fear.

I love you."

~Amy Carmichael~

Let's have some fun: Post a comment with what important thing you have learned from your (or someone else's if you don't have any) children!

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!