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!