Odds-n-Ends

JayDonn on the new walker and riding toy from his Grandparents S.

Dillon was so tired after a long day of doing his program
Dillon with his new nurse, Barb. She came here from Africa about 8 years ago. She is really nice.
We have been patterning Dillon. On Friday, he was lifting his head a whole lot!
JayDonn was encouraging his brother!

Dillon coming down the inclined floor:

Dillon looking around:

JayDonn playing with the new toy:

Song

This is a song on Mark Roger's CD Jesus Leads It really has touched my heart so I want to share the words with you. I hope you get a blessing from them, it isn't quite the same as hearing it, but I have faith that you can use your imagination. And if you can't I suggest you get teh CD and listen for yourself! :-)

Without a Valley

I’ve been walking through a valley
It was dark and it was drear
Yet in the middle,
Of my sorrow
I heard Jesus say,
“Child I am still here.”

Chorus:
But without a valley
How would I ever know
That his strong and gentle hand
Will never let me go
How would I know for sure
That I am secure and safe
Where ere I go
Without a valley,
How would I know?

So I’ll thank you Lord
For each trial
How you’re teaching me
Your perfect love.
You have shown that I
Can still have joy inside,
Even though the road seems long and rough.

Chorus (2x):
But without a valley
How would I ever know
That his strong and gentle hand
Will never let me go
How would I know for sure
That I am secure and safe
Where ere I go
Without a valley,
How would I know?

How would I know for sure
That I am secure and safe
Where ere I go
Without a valley,
How would I know?
Without a valley, how would I know?

Day Nursing/ Sick Boys

Well today was our first day with nurses, and she couldn't have picked a better day to start! Dillon was coughing up tons of secretions all day long. I a do mean almost nonstop! Mostly they are clear and watery, I am still wondering if his teeth hurt because his heart rate has been high (a good indicator of pain). I would have been so frazzled by the end of the day if she were here helping me! Then this evening when I picked Jay up from his nap he was burning up and his legs were bright red! I knew he wasn't feeling the best either, again he is teething, but he was HOT! I too his temperature, the first reading said 104.9 I am not sure this was right as I took it again and it said something like 101. The nurse got me a cool cloth and told me to take his shirt off and put it on his head and body. I also gave him Tylenol, but it didn't seem to help. After an 30 minutes, and his temp not coming below 100.4, I started giving him some homeopathic stuff and within 10 minutes it was down to 98. He smiled for the first time today! Poor baby boys, they are both having a hard time. Needless to say - if you don't see us in Church this is why. Josiah went, but the boys and I are staying home. I am hoping to go on and listen to a recorded sermon.

Anyways, the nurse was very nice and it was helpful to have her here today. So please keep praying that things will go well with this situation and just pray for us to have wisdom in understanding God's will for us right now.

Pictures of JayDonn

Here Jay is playing with a puzzle his Aunt Tori and Uncle Jonathan gave him for Christmas. When you put the animal back in place it says what animal it is and then makes the sound for a few seconds. he really enjoys it, but he is trying to eat it!

Jay climbs UP the ramp that is for Dillon to come DOWN.
He is such a little monkey! He is now going all the way to the green banket and sitting there like a bird on its perch.
I move Dillon now, just in case Jay decides to climb off the edge! I don't want him falling on to poor little Dillon's head!

A day in the life of...

Dillon's attorney had a person come make a video called "A Day in the Life of Dillon". (No, it isn't ready yet...) Well, it isn't as entertaining as that but here is a day in the life of Tiffany.....

Yesterday I was having a horrible day. It started with Dillon having a pretty violent seizure and continuing to be jumpy all day. I was unable to do his school because he wouldn’t calm down. I know he is teething and I think it may be due to pain in his mouth. Before when he got teeth he was so doped up on drugs he was unable to react to the pain. I decided to take the day and make all the phone calls I needed to make. I had to call and find out why Jay’s birth certificate I ordered 45 days ago never came. Bottom line, they don’t know so they are resending it. I need it because the social security office lost his SSN card when he was born. I can’t file taxes without his SSN, I can’t get his SSN without his birth certificate. It seems silly, but please pray I can get both of these in time to file taxes!

Then I had to call a company about getting Dillon his equipment (wheel chair, stander, bath seat, supported chair, and crawler). The vice president of the company I was using had has my order since Nov 7 and still not even placed a request for approval to my primary insurance! In other words he has done absolutely nothing to get Dillon this equipment in 6 months! I ask my attorney to help me with this matter as I want to be sure he does not ignore other kids in the future. I have called tons of companies my insurance gave me but none of them deal with the pediatric equipment I need. I thought I had one that would but then they said Oops, never mind we can’t do it since you aren’t ordering power equipment. My social worker was able to get me the name of another company. They are supposed to be coming next Tuesday to measure Dillon for all the equipment. Please pray for this as well as we need to get this stuff as soon as possible and it normally takes minimum 2 months.

I have never heard from my insurance about some things the doctor requested such as a better bed for Dillon that the nurses can rise and lower to help take care of him. I have left a message with my insurance case manager and still have not heard back from her as of now. I will have to call her again tomorrow. I am learning to make a pest of myself!

I then had to call my insurance and find out why the lady in the office (different lady than above) kept putting off getting the request in for Dillon’s day nurses. Her manager assured me that she reviewed this lady’s computer and that she did not have any of the paperwork until she personally asked the doctor for it on Friday (she was trying to stress how this lady went above and beyond the call of duty). My questions were: 1. Then why is she asking me for paper work that I sent her about 2 weeks ago? And more importantly, 2. Then how did she read me the letter the doctor sent her the Friday before? I got no answer. However, I did get a call from someone else who went over everything with me and called me a few hours later saying “you are approved; your nursing care will start as soon as your agencies find you a nurse!”

Meanwhile, Dillon is still jumping nonstop. I called the naturopathic doctor that has been helping me and she told me what to give Dillon and it did stop the jumps. Now he keeps getting it but when he does I give him some of the homeopathic remedy and it usually stops pretty quickly. Today I had a meeting with my nursing agency and two nurses. One is a night nurse, they are trying to take away the nurse I have now, and like a lot, to give me a different one, who also seems very nice, because they want my nurse to take on a case closer to her home. I told them it is up to her, I like her and will not take her off unless that is what she wants. Long story here as to how they went about trying to make this happen that I won’t go into all I will say is there was some serious manipulation going on and the nurse and I are not happy. I have written a letter about it all and will be sending that to the agency tomorrow just to inform them of what I have seen going on so they will know. The second nurse is the day nurse that is going to start. She stayed for a few hours today, she is very nice. This is where I need prayer! It is so hard to have someone in your house from 9am-6pm 5 days a week. I also have great concern about being consistent with training JayDonn with people in the house all the time. Please really pray for me as I learn to accept this. It was hard enough to accept night nursing care, but I knew I had to as I wasn't sleeping and it wasn't fair to Dillon to struggle all night. This is different, this is during my time with Dillon. I know I need help so I can cook, clean, and do laundry, but it doesn't make it any easier. I am sure any Mom reading this can stop and picture what it would be like if you had to have someone in your house caring for your child! It is really, really hard! I need your prayers! I am thinking of what has become my life verse again even in a situation like this... Luke 22:42 "Saying, Father, if thou be willing, remove this cup from me: nevertheless not my will, but thine, be done." There are some decisions being prayed about that may be God's way to remove this from me, but if it isn't God's will then I need to be ready to say "Not my will, but thine, be done." Thank you!

Dillon coming down ramp

Grandpa, Gramda and Aunty Hannah were here Monday late night - Thursday morning. Josiah and I had two days of lectures at the Institutes to learn more about how to help Dillon's brain recover from the injury. Here are some pictures they took:

Dillon looking at Grandma

Dillon and Aunty Hannah
A Jay sandwich!
Dillon's beautiful face
Jay's mischievous face!

This was the other day - Dillon was coming down his ramp, by the time I got the camera on he was mostly down but you can at least see him coming down a little. God is so good! Dillon is making slow, but sure progress. It is a lot of time and effort on my part, but it is so worth it to see my once blind, deaf, paralyzed and insensate child now seeing sometimes, responding to sudden noises occasionally, moving down a ramp and lifting his head, and responding to even the lightest touch!

Dillon Standing

Dillon has been doing such a good job! Here he is standing with Daddy. He isn't even using his arms (people used to say that he could only stand because he was tightening every muscle in his body, well I don't think this is the case anymore).

Here is Dillon standing some more!

Spring Day! and Good News!

First, the Spring Day photos:

This is a toy Grandma Y let Jay borrow, he really likes it!My boys enjoying the first nice spring day outside

Can you tell he is going to get into a LOT of trouble this summer?

Dillon likes to soak up the sun!

We went for a walk after this picture. I held Jay and pushed Dillon in his wheelchair. I can't believe little Jay actually gets heavy :-)

Now for some good news: Yesterday, unbeknown to my GramaMa we had a doctor appointment. Well, she was praying that God would let Dillon do something that day very specific to encourage me...little did she know God answered her prayers! Here's how it started....
Mrs Y was at my house at 6 AM, the nurse helped us load Dillon and all his stuff intot he car. We woke Jay up, fed him a little and all piled into the van. JayDonn fell right back asleep and Dillon did not beep once the whole way to CHOP. We arrived early enough for me to get some breakfast (I won't tell everyone that Mrs Y told me she wanted to eat on the way so I didn't eat anything and then in van told me she already ate! heehee) If we left any later we would be late so we have to leave very early. At the appointment I had to write down all the medicines Dillon is on. Here is what I wrote "Shiff's multi vitamin, 10ml, 1xday". The pulmonologist came into the room to see Dillon on his belly lifting up all the way on his hands with his arms fully extended. His first words to me were "What have you been feeding him?!" I said, "It isn't what I am feeding him...look at the med sheet!" He was amazed that Dillon is not on medicine, and he thought it was great! Then after talking for a while he came back into the room with the other doctor (who has never seen Dillon). This time Dillon was on his forearms with his head all the way up and "looking" around. He was amazed. This time he said "I don't know what you are doing, but it is working! Keep doing it!" I responded by saying, "You wanna know a secret? I am masking him!!" You see this doctor did not want to help me learn how to mask so I did research myself and have started that. They then wanted to know what I was doing, how, how long, how many times a day, etc. But the bottom line is that he saw HUGE improvements and had to admit that my program is working! I LOVE IT!! God is so good! He then turned to the other doctor and said "You don't understand when I met Dillon several months ago he was...." and I jumped in with "a rag doll?" He said he would have used the word "hypo tonic not rag doll, but yes" Like I told him, if he would have said "rag doll" he would be insensitive, but I am Mom I can get a way with it and it IS the best way to describe how Dillon was. The doctors do not want to conduct another sleep study after all. They believe that since his outer muscles are getting stronger than his inner muscles should be too.

More good news: I had to call the neurologist today and tell him that I took Dillon off his seizure drug so the nurses can get an order for it. When I told him, he was thrilled for Dillon!! He told me that it proves that we know what is best for Dillon and that "I don't even need to see him anymore." WOW! Do you know the rarity of a neurologist saying a child with CP doesn't need to be seen??!?!?!?! He said he still will follow him and will help me on the phone whenever I need it, but since Dillon's seizures are more under control now then on the medicine and that he is starting to make some developmental progress, he is doing great. I was thrilled!

Two prayer request: 1. A friend's very pre-term baby came home from the NICU this week but had to be readmitted today for some breathing trouble. Please pray for Dad, Mom, and baby girl. She is one that is so faithful in praying for and asking about Dillon and a very good friend. Thank you!
2. I was told of a mom who has a 6 year old healthy child and a 5 year old severely disabled child. Her husband took his own life on Feb 25. They live somewhere in or near Philly. She was a stay at home mom (so NO income now to buy food, heat, electric or housing) and must figure out how to provide for her children. I don't think she has family near by. PLEASE pray for her, I am hoping she will visit my blog...and if she does I want her to know how many people will say they are praying for her - so if you are going to pray will you write a comment and tell me/her. Thank you!

Pictures! and videos!

I did these in power point but couldn't upload the power point slides so I took a picture of my computer screen and uploaded that. The boys are wearing the clothes Mom K gave me that used to be Josiah's.





Jay was trying to share with Dillon, before I got the camera on he was trying to put it on Dillon's face then he started trying to put it in Dillon's hand.


Dillon is sitting alone for brief periods of time. Sorry I forgot that I can't flip the videos so it is sideways....too bad I don't have a camera to video everyone watching and turning your heads! :-)

You'll love these....

...that is if you aren't bored with all the videos I put on here. But hey, if you are bored you don't have to watch - that's the beauty of blogs!

This video is Dillon lifting his head again today and it shows JayDonn playing the piano and he KNOWS what note he is playing!


This video is Dillon coming down his ramp. He used to never move his feet to come down it since we have been working with him Dillon is moving his feet more. In a few weeks he will be a real pro at this!

Video of Dillon seeing

Daddy and JayDonn playing the piano together

This was the first time Jay found my pots - video below

Look close and you will see that Dillon is looking at this picture!


Jay's first time in my pots (about 2-3 weeks ago I think)

Dillon is AMAZING!

I want to get more videos and pictures on but this one for now! This was taken yesterday during his therapy. Which, by the way, when I asked the therapist if she had seen a lot of seizures she said "I don't remember seeing ANY!" He is off ALL medication as of last night! Praise the Lord! He is only on homeopathic remedies and it is working better than the horrible drugs!!!

Camera found!

I found my camera so I can try to get videos and pictures of Dillon and Jay doing their school. I'll save you the trouble of asking - I found it under a sofa cushion. :-)

What's up?

"What's up?" Dillon's head! Ok, not a very creative joke, I know. Saturday night Dillon had his head up for about 30 minutes with only putting it down for a few seconds at a time. He did WONDERFUL! He also turned his head when Josiah came into his room and said something like "Good boy Dillon!" He turned towards Josiah! Grandma Y said she thought she saw him turn his head to her voice as well. He is really doing well. He was up on his fists with his arms full extended and his head all the way up. I was SOOO HAPPY! Praise the Lord! God is so good!

(Sorry no pictures, I can't find my camera - would you pray that I could find it please?)

Then today I was teaching Jay his words and his "church" words he was excited to read (these are new words that he has only seen once or twice before). He crawled right over and was smiling. Then a few minutes later when we were reading the "doctor" words (anything medical basically) and he wouldn't look at me. So I held the word "van" (we always go in the van to appointments) in my left hand and the word "nurse" in my right. I asked him "Jay, where's nurse?" He actually reached out and touched the word nurse! Then I put "doctor" in my left hand and "medicine" in my right and asked "Where's doctor?" He reached out and touched doctor. (Notice the correct words were in different hands, he was not just reaching for the closest, he KNEW the words!) This is why he wouldn't look at me when I was teaching them to him because he already knows them!
I also had him play the note G on the piano today and gave him the option between D and G and asked which one he played. He reached for the G!! He is learning! It is amazing how God created babies to be so capable of learning if only we adults would quit treating them like they are dumb and help them learn! (I include myself in that as I would never have known how smart babies are if it weren't for the lectures we attended to help us with Dillon.)

I made my program with Dillon even more time consuming (Go ahead tell me I'm crazy, but if you could see Dillon and see the improvement you wouldn't tell me anything other than do more!) so any ways I need to get busy!! Bye for now!

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.