Saturday, May 24, 2008

Dillon's Marine Hero!!

It's Memorial Day weekend. A time to remember the military heros in our country. Men have died to protect our rights and freedom; to protect our families. Dillon's Grandpa served 8 years as a Marine. He was willing to fight and die for our country. Today, he became Dillon's personal hero!!!

My dad was at a Memorial Day parade as he is in the Marine Corps League. Many of the other Marines know about Dillon and were asking about him. After my Dad gave an update there was one man, who my Dad did not even know, that started making jokes and comments about Disabled people. my Dad asked many times for him to stop making fun of disabled people, he even changed the van he was riding in to avoid this man as he would not listen to my Dad or the other Marines when they asked him to stop. Nonetheless he continued and eventually said something like "Your grandson is nothing more than a F(beep) vegetable!" My dad then turn and handed the rifle that he was holding to another man and PUNCHED him!!!! He then told the guy not to get up until he was gone, and he didn't.

Daddy, you are Dillon and my hero!! Thank you for be willing to fight for your country. Thank you for standing up for your grandson! I know you would never have wanted to do something like that, but I truly believe if he was bold enough to keep insulting your grandson to your face, I can only imagine how many other people this man has hurt. I can only imagine how many Moms have heard him make comments about their child as he walked by in the store, or in a doctor's office and been brought to tears over him. Thank you for Dillon and thank you for all the other disabled children that can't stand up for themselves.


Thursday, May 22, 2008

Miracle story!

This is a MUST READ story! Don't skip it! My Parents-in-law's church supports this family's Pastor as he is a missionary. They gave their permission to pass it on to anyone who would be touched by it, I think of no one better than all the faithful readers of my blog to pass it on to. Prepare yourself to be EXCITED at what a Might God we serve!!! (sorry for the format I can't seem to fix it)

Daddy and Carina during dress rehearsal for surgery

May 16, 2008
Dear Family and Friends,
Thank you so much for all of your prayers!! God provided us with a miracle on the day
of Carina’s cochlear implant surgery, and we cannot wait to share it with everyone!!
Carina did not receive a cochlear implant, and here is our true story of the amazing
power and love of our Heavenly Father:

Carina could not eat anything after midnight the night before her surgery, and her surgery
had been scheduled for 2:30p.m. That is a very long time for an active toddler to go
without food, and it was a very hard morning. Carina kept crying and begging for food,
and it was awful to watch. Mommy shed a few tears with her. As we were getting ready
to leave for the hospital, the hospital called to say they wanted us to come early because
they were ahead of schedule. We took off right then, and they kept calling to see where
we were. Finally, we told them we were in the parking garage and that we would be
there soon. Our Pastor, Pastor Bryan Greene, had prayer with us in the parking lot before
we went inside because we were afraid they wouldn’t give us the chance once we reached
the operating room.

As soon as we got there, they whisked us back to get Carina ready. They allowed Lisa to
go with Carina to the operating room to stay with her until she was asleep. Since Lisa
couldn’t carry Carina because of her herniated disk, the nurses allowed Carina to “drive”
a cool, pink car into the operating room clutching her little monkey stuffed animal.
The nurses told us to go get something to eat because the surgery would take about 3
hours. After about 2 hours, we were called to the consultation room to meet with the
doctor. The doctor came into the room and said, “Well, we don’t have an implant, and
we don’t have an incision to talk about.” We didn’t know what to think. Was this a
strange joke, were there complications that prevented the implant: we didn’t know.
The doctor explained that at the last minute before surgery, they decided to perform a
hearing test. They expected to find results consistent with Carina’s severe/profound level
of hearing loss. To their complete surprise, they found that Carina’s hearing had
improved in BOTH ears by about 50%! There is no medical explanation for the increase
in Carina’s hearing, and with the Mondini Syndrome that she has, it shouldn’t happen.
Before waking Carina up, the doctors did research, had an emergency conference call
with her teachers at school, and looked at all past medical records. They still could find
no explanation for the huge improvement in Carina’s hearing. We know that God gave
Carina the increase in her hearing, and we give Him all the praise and glory for it! Due to
the level of hearing that Carina now has, she no longer needed the cochlear implant at
this time.

After Carina woke up and came out of recovery, we actually had to take her to have her
hearing aids turned down! Praise God!! It is absolutely amazing to watch Carina now.
Dennis was walking Carina through the parking lot to take her to school the day after her
“surgery,” and Carina stopped him because she heard birds singing. Wow!! It is a whole
new world for her. She still needs her hearing aids, but they work extremely well now at
a low volume. Prior to May 13, 2008, even with both hearing aids turned up to maximum
volume, Carina still was not able to hear all speech sounds, and some sounds were
distorted. What a difference!!

Our God is an awesome God, and He can work in so many wonderful ways. We feel that
God has given us such a gift by returning a great deal of Carina’s natural hearing. We do
not know what the future holds, but we do know that whether Carina keeps the hearing
she now has, or if she eventually needs the cochlear implant, God is in control, and He
loves us. We are all special to God, and we know that He loves Carina. We truly
continue to put our faith and trust in Him to know what is best for Carina. We just feel
like shouting from the rooftops what God has done for us. The doctors may be totally
confused, but things could not be more crystal clear for us. We know that God increased
Carina’s hearing, and we are so thankful!

Please share our miracle with others! Thank you again for all of your faithful prayers!
There truly is power in prayer, and we greatly appreciate them!!
Dennis, Lisa, and Carina

Now tell me that doesn't get you excited and wanting to pray for a miracle like that in Dillon's life. Pray believeing because God can do ANYTHING!

Wednesday, May 21, 2008

Prayer Request Update

Mr Y called me about 3:15 and said that Mrs Y was out of surgery but not awake or in a room yet. (At the time of this writing I know she is in a room, but I don't know any thing else new.) She apparently did pretty well, although it had to be a complete hip replacement as her whole hip was shot according to the doctor.

Please continue to pray for her as she recovers. I am hoping to go see her tomorrow (Thursday) if she is up to visitors!

Thanks for praying!!!!

Tuesday, May 20, 2008

Please Pray

I would ask that you would please pray for Annette Y. This is the lady that was helping me with taking Dillon to doctor appointments. She started off with helping me even though she didn't really know me or Dillon that well. Well, God had something in store for us that we didn't know. Mrs Y is now one of my dearest friends! She is never afraid to tell me the things I need to hear, to challenge me to do right in situations, to bluntly "tell it like it is!" She is a sweet friend of mine.

Tomorrow she goes in for hip replacement surgery. It is supposed to be a partial, as long as the doctor doesn't get in there and find any more damage. Please pray that God would direct the doctor's hands during the surgery and that all would go well. Pray for a quick recovery for Mrs. Y and that her pain would quickly go away. Mrs. Y broke her hip about 2 years ago after falling and they thought it was healing fine but then she started having a lot of pain and the doctors discovered that the bone is dying, hence the hip replacement tomorrow.

I appreciate your prayers for Mrs Y and I know she does too!!
This is a picture of Mrs Y sewing something for Dillon that I asked her to help me make!

G-Tube replacement

This is a video of me changing Dillon's G-Tube today. Barb was holding the camera and asked a few things, so we are the two you will hear on it. Okay... I will be nice and warn you, if you are really weak stomached you may not want to watch it, but it really isn't that gross! If I can do it, most people should be able to watch it. ;-)

Monday, May 19, 2008

Beautiful sound!

A master violinist, a choir of hand bells, my husband's singing voice, JayDonn's laugh; are all wonderful sounds to listen to.

This, however, is the most beautiful sound to my ears!

Enjoy! I hope it puts a smile on your face as it did mine this afternoon!

Sunday, May 18, 2008

An encouragment

Watch this video, it is about a man from South Africa that will compete in the Olympics in running - even though he is a double amputee!! He doesn't have his legs and he is still as good as the other athletes! (sorry for the ad. before the video)

What an encouragment to not give up, to never say never -even with disabilities!

Saturday, May 17, 2008


Sandyland has its grand opening today. Susan (Dillon's physical therapist) and her family donated the playground for all abilities in memory of Susan's father's siblings. Below is Susan's father. I am trying to remember the story, so I hope I get it all right....When Susan's dad was young his parents lost his little brother who was 1 or 2 from heart defects. His name was J.J. Then 33 days later their 12 year old daughter, Sandy, was killed in an accident. Susan's dad wanted to do something in their memory and thought this was perfect.
Here is Dillon swinging by himself for the first time! It is a special swing meant for children with special needs. He is a little small for it yet!
But he was still enjoying the ride!

Jay was also enjoying a ride on a swing. The young man next to Jay is Josh, we met them there. He was a really nice young man.

Dillon was able to go all the way to the top of the play ground in his wheelchair. The whole area has a ramp so children with walkers or wheelchairs can enjoy it. The ground it made of little rubber pieces so the wheels can move easily. I know Sue told me it was very expensive flooring, but it was so nice!

Dillon's night nurse, Fran, and her husband (Dominic) and son (Danny) came too. Here is Danny enjoying the swing. He loved it! He was smiling and laughing on it the whole time!

Jay was having fun on the other parts of the playground too!

This was Dillon's first time in a swing by himself. Look how high he went!

This was Jay's 3rd time hanging so he didn't enjoy it as much as he did the first time! The first time he held on 2 times as long and thought it was great!!

Thursday, May 15, 2008

New Formula

Our nightly routine has changed with this new formula Dillon is on. Here are the steps as I make his food for the night and the next day.

1. Wash the container from today

2. Zero the scale with a bowl on it
3. Pour in 97 grams of KetoCal 3:1 formula (I know the scale says 98 - I had to take a little out)
4. Add 1/2 teaspoon of barley grain (good for overall health)
5. Add 1/4 teaspoon Morton's lite salt mixture (the diet doesn't have enough potassium or sodium)
6. Measure out 250, 250, then 125 ml of water. Heating each one in the microwave
7. Open pro biotic capsule and pour into the formula mixture
8. Make sure water is heated to at least 120. I find it works best between 120-130. Sometimes it is too hot so I have to wait a little bit for it to cool down
9. Close and shake! (It kind of explodes when I first shake it so I have to vent the lid once or twice) The formula is stored in the fridge and is only good for 24 hours which is why I make new food evey evening.

Now you all are experts on making Dillon's food - anybody want to try? ;-)

Monday, May 12, 2008

Divine Appointment

Yesterday was Mother's day, my third mother's day. Happy Mother's day to all the Mom's that read this! Especially my Mom and Mom in law! I was thinking about what I should blog for Mother's Day, I think I will just share a divine appointment we had...

Josiah offered to take me out for lunch but I decided to go home and make a nice dinner since it is always so crowded on Mother's Day. However, after night church when he offered to take me to a nice restaurant I asked if we could go to Friendly's instead - Ice cream!! We split a meal and a wonderful mocha drink. When Josiah went up to pay for it I was caring for Dillon. A nice lady came up and started asking about Dillon. I could tell she was holding back tears. She told me she is 72, but years ago she had a boy like Dillon. I don't think he was as bad as he could eat and the doctors let her figure out that something was wrong, but still. She said his name was Scott. She had a boy 4 years older than Scott and one 1 year younger. Scott died at the age of 8. He started having seizures and literally died from shaking himself so hard. She told me she KNOWS she will see him in heaven whole and healthy one day because she knows she has the Lord in her heart! What a blessing! I gave her the Dillon's Journey story that I was planning to leave the waiter. She told me she spent the day with her other two boys since it was Mother's Day.

When she left the waiter told me he has seen her here before and that she always has sweet things to say so I told him what she said about having a son like Dillon. Josiah went to get me another story so I gave it to the waiter and he said he was planning to ask me if I had another one for him! The waiter's grandparents live really close to our church, which is 40 minutes from where we were eating! What a neat encounter! I love meeting other people who have had family members like Dillon.

Thank you Lord that we are able to be a blessing to others and thank you for sending them to be a blessing to me!

Scott's Mom - If you happen to read this, thank you for taking the time to come up and share your story with me, it was a true blessing!

Friday, May 09, 2008

Treasure Lake

We met my family at Treasure Lake for the weekend. We left Friday and came home Sunday afternoon. (then Monday morning was the trip to the hospital, needless to say it has been a long week!)

Top row left to right: Uncle Jonathan, Daddy, Grandpa S, Great Grandpa S.
Second row left to right: Cousin Jeremiah, Jay
Third Row left to right: Aunt Victoria, Mommy, Grandma S, Great Grandma S
Fourth Row: Baby Anderson (Due Dec 25, 2008) Dillon
Cousins! Jeremiah (7 months), Dillon (22 months), JayDonn (10 months)
I'm a fireman just like Uncle Jonathan and Great Grandpa K
Me too! I want to be a fireman too!
Do you know how hard it was to keep Jeremiah sitting upright and looking, while keeping Dillon from falling over, and while trying to keep Jay looking while not climbing off the sofa all at the same time?!
We had a great time, I took about 150 pictures...but I won't put them all on here! :-)

Thursday, May 08, 2008

more pics

I forgot to add these photos to the Hospital post:

Jay and C as C's Mommy was putting on a puppet show for them. They weren't sure what to think of it!

Playing away....
We got to see a lot of the nurses/doctors who cared for Dillon when he was first born. Josiah didn't think they would remember us, but many of them did! This was the nurse that admitted Dillon and cared for him many of his days there. She was so good to him! It was nice to see the people who took such good care of Dillon during those 5 long weeks when no one knew if he was going to live or not!

I was able to get out about 50 of Dillon's Journey stories. Pray for those who will be reading it and maybe visiting my blog. We already had one person from the hospital visit and leave a comment on our website.

Hospital Stay #6

Monday we took Dillon in for his 6th hospital stay in less than 2 years of life. He was put on the Ketogenic diet. This diet is 3 fat for every 1 carb (a normal diet is 10 carb for every 1 fat). It is basically starving his body since he is getting so little carbs and forcing his brain to use the fat instead of carbs for energy. He will go into Ketosis (which is what would happen if you were starving). His brain will make ketones, and while they don't know how or why the presence of the ketones often reduces or stops seizures. A normal person's blood sugar is 90-120 Dillon's will be 50-70. We have to do sugar testing 2 times a day and ketone testing once a day. The sugar test is by the blood test, like diabetics do, and the ketone test is by urine. On this diet, Dillon cannot have any extra carbs; not even in the form of shampoo, mouthwash, insect repellent, or sunscreen. Once he is on the diet we can try these things and see if they cause break through seizures or not. I will be ordering Dillon a allergy bracelet to warn medical professionals of the diet as something as common as antibiotics, if not adjusted for the diet, could kill him. The doctors don't expect the diet to stop the seizures, just to reduce them. However, I am praying the diet will stop ALL seizures!

So on Monday, Anne came to my house along with the nurse and we headed down to St Chris. I forgot Dillon's testing supplies so Anne took Jay back home and got them. It was such a blessing having her there! After getting extensive blood testing, Dillon was admitted tot he Special Care Unit (SCU). Sunday night Josiah had been very sick and apparently Dillon caught it too as he projectile vomited all night long. By Monday afternoon they both seemed better. Jay then started to not eat too much on Monday. They started Dillon on 75% of the diet Monday at 3pm. Tuesday at 3pm they started the full strength diet. However, the doctors got scared when he had a seizure and gave him TWO major drugs that knocked him out Tuesday morning. The neurologist and I weren't too happy. He reassured me he talked with the doctors and told them that the seizure wasn't hurting him and to not give the drugs unless it lasted 15 minutes. He said they tend to forget that those drugs take 10 minutes to work so by the time they work he was done the seizure anyways! So all of Tuesday Dillon didn't move a muscle. This was very frustrating because the whole reason we were there was so I could make sure he was too tired on this new diet as some people get very lethargic. Plus he was not having enough out-put as compared to his in-put. They wanted to start an IV but I told them no as they need to make sure he is getting enough water in his daily schedule to have enough out-put. We do not measure it here at home so if it isn't enough there it won't be enough here. Wednesday morning I woke up in terrible pain and throwing up. Yup, I caught it! It was horrible. I was so thankful J and J (and C!) came up to spend the day with us as they took care of Jay for about 6 hours while I was in bed! I only saw Dillon for about 30 minutes, that's how sick I was! Dillon was still pretty out of it from what I could see. By this time Jay was not eating or drinking too much and vomited if he did have anything. It wasn't until Wed that he was any less active than normal, though. Thursday I woke up feeling much better. I wasn't perfect, but so much better than the day before. We were able to bring Dillon home about 1 o'clock. We had asked someone at church to help us bring the van home as I didn't want to drive since I had been so sick and I needed to be in the back with Dillon. Thankfully some men in the church helped us out with this! On the way home Dillon coughed a whole lot and Jay vomited all over the place, it was good I was back with them. I think the car ride was just too much as he hasn't vomited since. Please pray for Jay that he will start feeling better. He is active now that we are home, but I can tell he still isn't feeling good.

Some Pics:

Jay had a great time in the crib with Dillon
This is at the play area in the Ronald McDonald house. The house was great! For only $15 a night we had a wonderful room with a huge bathroom and two queen size Sleep Number beds, free food, a room with some gym equipment, a video game room, a pool table, a play place for the kids, free parking, etc.
Can you see his little head near the cash register?
This is the huge kitchen. It is fully stocked with TONS of food! People donate all the things to the house. There are even things for baking should you get the desire to bake while there. They try to have people come most nights to cook dinner for the families too. It is such a blessing! For those of you who knew us while we were there for five weeks, the meals are a big part of it. You can't afford to eat right and have no place to do cooking (at least that was until the PRMH was built about a year ago!)
The dining area had nice hardwood floors. The whole house was beautiful!
This is Dillon in his "room" (it is one big area with curtains to make the rooms)
Jay with Auntie Anne
Jay finally slept for about an hour on Monday!
This is Dillon getting a kidney ultrasound. This diet can be hard on the kidneys and cause kidney stones so they check to make sure there is no problems with the kidneys before starting the diet.
Dillon and Mommy having "fun" in the hospital!

Thursday, May 01, 2008

What a day!

Before I get to the day we had yesterday I wanted to share these: They are pictures of Jay's first Popsicle. He is still teething - he has five now and I am not sure if more are coming in or not.

As you can imagine...after the Popsicle he needed a bath!
Yesterday, where do I even start?! Dillon had his out patient appointment for the new diet he is going on next week (he will be admitted to the hospital on Monday). We parked across the street at Burger King where I went in and got a much needed jolt of caffeine by ordering a medium coke. We were going to come back and eat lunch after the appointment. It was a beautiful day so we walked over to the hospital. We went in and sat in the waiting room. It was here that we discovered the suction machine was no longer holding a charge so it was almost dead. Once we were back for the appointment they were able to bring us a suction machine from a crash cart in the EEG room.
Jay was very well behaved during all this! The floor was carpeted so we let him play all around the room. I learned a lot of the specifics of the diet. They thought they had overwhelmed me, but I had already known what they were telling me it was just the exact details I didn't know.
We then went down to the NICU were I was able to see one doctor, one nurse, and one receptionist that remembered us from when Dillon was born. After being there for a little more than 5 minutes we headed back to Burger King.
By now Dillon's oxygen tank was just about empty as he had be having a hard time the whole day. To my surprise my van was GONE - oxygen tank and all! I went in and asked the manager and she very rudely told me I was parked illegally and they towed my van. Keep in mind we have a disabled windshield sign, a disabled plate, and disabled stickers on it AND i bought something already!! I told her I had bought something this morning and she didn't care, she was so rude and mean. I called the place and they told me to come get it, I explained I had a disabled child and couldn't get there and they said to get in a cab and come. I didn't tell them I had Barb with me so they thought it was just me and the disabled baby and they didn't care at all.
I called Josiah he started to head there from work on his motorcycle. Dillon was struggling with his oxygen so much I told Barb not to mute the machine I wanted everyone to know that they towed a patron's car and left my baby without oxygen! There was a really nice nurse who sat with Barb for a few minutes to try to help her when Josiah and I were finally able to get a correct address from them and head over to get the van.
We got there and nobody was there! We were in a rush because of needing Dillon's oxygen! I kept calling and calling and there was no answer for over 10 minutes. I called 911 to try to get the police to help us in someway since no one would answer the phone and there were no people on the property and for all we knew they weren't going to answer the phone. Finally after about 20 minutes they answered and said I should have told them I was coming (hello! Isn't calling 5 times to be able to get a correct address tell you that I am trying to come?) So they said to wait 10 minutes for them to get there. Josiah and I are NOT happy as you can imagine! They FINALLY get there 23 minutes later and we tried to pay them their high way robbery fee of 150 but they want it in cash only. We didn't have it in cash - does ANYBODY who reads this carry around 150 in cash especially in the scary part of Philly?! So we didn't have the money, at this point we were on the phone with our Attorneys whose offices are about 15-20 minutes away, they are so wonderful! Atty Duffy dropped everything and got in a cab and came right then to where we were and brought us the cash so we could get the van out. While he was in transit the cops finally came and while talking to the cops the guy told him that "Normally we would let them get anything out of the car but because she was upset with our boss he told us not to let them get the oxygen tanks out." (Josiah had no way to transport the oxygen tanks even if we could get them.) The cop was astonished! He asked him if he was serious. He asked asked if they really towed a disabled person's car.
So finally because of the cop the guy agreed to let Josiah put the motorcycle in the gate and take the car. We forgot but should have told the cops that they were also firing pellet guns in the yard with the towed cars and facing our direction where we were standing. Once Josiah left three men approached me and asked what was going on since they could see the "distress". I told them and they were so surprised at this Mystical towing company's attitude. Our attorney got there at this point, shortly after Josiah left with the van. They just wanted the cash and to leave, but then they realized they needed a license number and I left mine at the Burger King. They then wanted our attorney's license and he rightly refused as he was only there to bring us some money and help us be able to get our van back. He had to wait for Josiah to go back the 30 blocks to Burger King get Barb and the boys and come back (which he wasn't sure exactly how to get back with all the one way streets.) The guy told kept complaining about having "waste" so much time there so I told him to think that every minute he "wasted" there my son was struggling to take a breath. He then said well I didn't think you were telling the truth but it finally seemed like you were which is why I let you take the van. Is he dumb? Do I drive around with disabled plates on my car for the rare event that I might get towed and then I have a really good lie to use?! Come one! At one point he told me he was just doing his job like I was just doing mine, I kindly pointed out that the difference is my job is trying to protect a life. He also threatened to tow the attorney's taxi driver if he didn't move even though there was not a no parking sign and their "driveway" is nothing more than a low curb.
Needless to say these men were insane! The guy even told the taxi driver that he "doesn't like to tow taxis because you are given your $150 and that's it, there's no fight...I like when there's a fight!" The guy is crazy! The company is crazy!
FINALLY we got the van, got Dillon Jay and Barb, got the oxygen to Dillon and got home around 6. (I saw the car gone at 1, we left philly at 4 so 3 hours of Dillon struggling to breath, with traffic it took two hours to come home) What a day!
I am so glad it is over. I have contacted Burger King and am filing a complaint that even though I bought food my car was towed and because of the rudeness of their manager. We have been at that store sooo many times during the course of Dillon's admissions, but I will NOT go there again even though he is being admitted again this week. I did file a police report against the towing place while the police officer was there.
It is so good nothing happened to Dillon! I am so thankful that I had Barb with me and for her attitude in this whole thing. She could have refused to care for Jay as that is not part of her job description, but she sweetly took care of Dillon and Jay while sitting in the Burger King with no help. What a blessing she was with me! We got home dead tired and ordered Pizza (I didn't eat in almost 12 hours because I refused to give Burger King any business after this). We asked Barb to take one home to her daughters as well, I was so thankful for her help - a pizza is the least we could do!
what a day, what a day, what a crazy crazy day!