Friday, June 17, 2011

Dillon's 5th Birthday

Dillon the Birthday Boy!

Yes, even on his birthday we made him do his ROM (range of motion) and his stander!

Miss Julie, his nurse, gave Dillon a T-shirt and Short set and special toothpaste that is supposed to be better for him on the ketogenic diet.

Jay helping me make Dillon's ice cream cake - of course every other minute I heard "Can I lick that now?"
We decorated the backyard so that we could have a BBQ and enjoy the beautiful - not hot - day with him.
Dillon by his table with his presents and party stuff. The cake isn't out there yet... it IS an ICE CREAM cake! :o) Daddy and Mommy got him a giant exercise ball to be used for his therapy. Jay got Dillon some glow bracelets that we had fun using once it got dark. Truett got Dillon a 4 pack of play-doh for his occupational therapy.
While I was decorating I suddenly hear this little voice... can you see him?
Here's a closer view in case you couldn't find waldo! He woke up from his nap and heard us in the back yard so instead of coming down he decided to try to carry on a conversation with us from his bedroom window.
Mommy and Dillon! I wanted a quick picture before the wind blew everything away!
I LOVE LOVE LOVE Dillon's freckles! The more he is in the sun the more he gets - just like his Mommy!
Dillon's ice cream cake! His name is written with the hot fudge that is in between each layer of ice cream. YUM YUM
Jay being goofy when Daddy got home from work.
Daddy and Truett
Mommy, Daddy and Dillon - wow has he changed in the last five years! He is HUGE now! :o) I guess that is what babies do - they grow up!
Truett was so tired so he was in bed already - so here is Daddy with his oldest two boys.
I love this picture - except for the lantern in the background. I love my Dillon Boy!
Another picture I love! I think you can see how much Dillon and Daddy look a like with this one.
Me and my Big Boy!
Snuggle time!

Love his chubby little hands. his hands and feet are chubby but that is the ONLY chub on this boy! His legs and stomach are so thin!

I tried to get a picture of the three boys after Truett woke up and it was a disaster! I couldn't get them to hold still... and look normal at the same time!

I do like this one though. Even though you can't see Truett you see them having fun and enjoying each other!

It was a good day over all. It is always emotional if I think about it - so I just don't think about it. I just rejoice in having my Dillon here for another full year and praying that God will allow us another healthy year with Dillon.


Grandma K asked Jay to give Dillon 5 kisses for her so he did. She is still on the phone in this video in case you hear her.

Singing Happy Birthday to Dillon!

Dillon trying a taste of his ice cream cake! He didn't seem to appreciate it too much!

Wednesday, June 15, 2011

5 years ago...

5 years ago…

June 16, 2006 was a beautiful late spring Friday morning when the young soon-to-be-Mom woke up and started getting ready for work. After her morning retinue she waddled to the car and drove the 15 minutes to work at Sherwin Williams, where she had been working for nearly two years. The manager was already there when she clocked in at 9AM and started helping customers. The store was usually slow, which was an advantage as the pregnancy was making it difficult to walk around all day and carry paint cans. The only thing out the ordinary was the unusually sharp back pain the mom was experiencing all day long. Shifting in her chair, walking around, stretching, nothing seemed to relieve the back discomfort. The midwife had told the Mom the last week that she was 2 cm dilated and moving towards having the baby in the next couple days. The Mom was taking Red Raspberry throughout the day at the midwife’s instruction to help her labor be more effective and thereby, hopefully, quicker. Since the soon-to-be-Grandparents live out of state and needed to rent a car for the trip to see the new arrival; the midwife thought it would be acceptable to start Castor oil to begin labor the next morning. After receiving all the necessary instructions on the phone the she began to get excited thinking the baby would be born in the next couple of days!

All day the manager was hoping the expectant Mom would go into labor while at work. She thought it would be so much fun to close the store down with a sign posted on the door “Sorry we’re closed! Employee went into labor – at hospital!” At 2pm when her shift was over, they were both a little disappointed that didn’t happen. Driving home from work she decided to stop at the health food store, Queens, just blocks from her house for the Castor oil. Unfortunately, they did not carry the ingestion kind. From there she went to CVS and was able to buy the proper one. She arrived home and put it in the medicine cabinet, little did she know it was about to stay in that spot for months, never to be touched again!

Around 3pm the expectant Mom felt a funny pain in her stomach. A few minutes later she felt another one. She decided to call her Mom and get her opinion on what was happening. Her Mom started timing the pains and sure enough they were coming 7 minutes apart and getting stronger and stronger. At first she was talking and walking right through them. Within a short amount of time the pain was stopping her in her tracks and she was unable to talk during them. By 4pm the Grandma suggested calling the soon-to-be-Daddy home from work. Not wanting him to miss work, they discussed if this was really necessary, but finally decided it was best to have him home, even if the birth was going to be a while. She called her husband and work and told him he should head home as soon as possible. The time was coming! She called her Mom back and continued to talk with her while Daddy drove his motorcycle home from work. By 5pm the contraction were coming every 4 minutes.

The experienced Mom told the inexperienced Mom to call the midwife. But the she was trying to follow the Midwife’s instructions – which say to wait for the contraction to be 5 minutes apart for 2 full hours before calling. The expectant Mom didn’t want to be “hyper” or “annoying” but the experienced Mom explained that the contractions were moving faster than most people’s and the call was important. With her loving husband home, they called the midwife and she said she was already at the hospital so to come on in and be checked out. Of course, the Daddy is a cool, calm sort of guy so he wasn’t rushing or scared. He decided it was finally time to pack his bags! And then he felt they would appreciate a shower before going to the hospital. So with contractions coming every 3-4 minutes they quick washed their hair and headed out the door.

About half way to the hospital the cell phone rang. It was Anne, the Mom’s best friend. She was asking the Mom if she wanted to plan to go yard selling the next morning. It was then the next contraction hit and the Mom moaned loudly and handed the phone to the driving Daddy. They laughed a little as Anne figured out yard selling was NOT going to be on the agenda for the next morning!

They continued driving and the laboring Mom was amazed at how slow her normally speed-demon husband was driving! She was thinking this was finally a GOOD time to be speeding, and yet he wasn’t! He even stopped and motioned people out in front of him! But the contractions were hurting too much to get into a discussion about it. The one way streets also caused a little frustration as the husband went the wrong way and had to circle around a second time to finally arrive at the hospital around 6pm. He sweetly dropped her off at the front door where a young lady was in a wheelchair waiting for her ride to take her home. The hospital volunteer asked her to sit on the bench instead and gave the wheelchair to the Mom who could hardly stand at this point. The midwife arrived in the lobby about the same time as the husband got back from parking the car. They started towards the elevator. The Mom reassured the Midwife that she did NOT take the castor oil as they talk about earlier in the day. They were laughing together at the timing of the whole situation.

Arriving into the midwife room on the labor and delivery floor they found the Mom was 8 cm and broke her water. The monitor showed the baby had a good heart rate and everything was going smoothly. The midwife came back in 20 minutes and found the Mom was already 10cm and should start pushing. She told the Mom the baby should be here within the next hour. They decided to go into the warm water as it was the Mom’s hope to deliver the baby in the water. She read of the more soothing effect it has for the baby making a transition from the warm womb to the loud, cold world. She also read of the pain reducer it had for the Mom since she planned to have the baby with no pain medication.

After about 30 minutes in the water the Midwife suggested getting out. It helped the pain but wasn’t helping this Mom push the baby. They went into yet another room with a bed, a birthing ball, a stool and some other supplies.

While on the bed in this room, the Mom was told they were having trouble getting the baby’s heart rate because he/she was moving too much. The Mom was reassured by the fact that in checkups they often were “chasing” the heart beat even though Mom felt no movement. She continued concentrating on labor and didn’t worry about it. After 10 minutes the midwife and two nurses said they might need to do an internal monitor to get the heartbeat. It was just then the nurse was able to get a heartbeat and everything returned to normal. Her back was still in immense pain and her supportive husband was pushing all his weight on her lower back to help with the pain. The midwife was saying it was “back labor” and that the baby was face up. The Mom was getting tired and the bright light shining in her eyes were annoying, so she closed her eyes. The midwife yelled at her “I know you hate me right now but open your eyes!” The Mom almost responded “I don’t HATE you!!” But then realized the midwife was trying to use physiology on her and help her get through it so she remained quiet but opened her eyes and kept pushing. At some point the midwife finally saw that this inexperienced Mom was trying to push in between contractions when there wasn’t as much pain. She explained this would not work and how to do it properly.

Trying many different positions that were not comfortable they finally moved to a stool. During this time the baby must have flipped because the back pain stopped and it was just normal birthing pain. Dad was sitting behind her holding her up and the baby was about to be born! The Dad started to get very excited as he saw a head of dark hair! The midwife wanted the young Mom to feel her baby’s hair, but she wanted to just concentrate and get through it. The young Mom saw scissors being brought over and was afraid they planed to cut her and started saying “I’m pushing! I’m pushing! Don’t cut me!” The midwife chuckled a little and said “No, this is to cut the Baby’s cord with!” The Midwife continued helping the baby’s head even though she was inflicting more pain than the baby was!

At 8:10 in the evening, just 5 hours after the first contraction, the baby was born! Mom and Dad were so excited! The miracle of birth just happened and it was THEIR baby! The new Mom was asking over and over “Is it a boy or a girl?!” The midwife told Dad to look. “It’s a BOY!” He exclaimed! They were thrilled! “I knew it!” said the Mom. The midwife had the baby on the Mom’s chest and was rubbing him with the blanket. She then held up the cord, clamped on either side, for the Dad to cut. She handed him the scissors and told him to cut it. He wanted to make sure it was in the right place so he asked where he should cut. Joy unexplained was in these parents heart!

“Cut it NOW!” came the stern reply. Suddenly the new Mom stopped and thought about the weird silence. The baby wasn’t crying. “Why isn’t he crying?” she asked over and over again. Her husband tried to reassure her that it was going to be okay. The midwife took him across the room and where the nurses were rubbing him. After a few moments a nurse walked out of the room carrying her precious little bundle, who still was not crying. The midwife explained that the new little boy was not crying because he was not breathing. She left the room shortly afterward. At some point the couple realized the baby was limp, lifeless, not moving and very gray. It did not register with them at first because of the joy of having their first baby in their arms and having never seen a birth before they didn't know what to expect from a new baby.

The calls started. The paternal Grandparents were traveling out of state, so without a cell phone, they were not able to be reached. The wife called her Father, who was at a Family Night at his church in Ohio. “Hello?” came the cheerful answer as he was awaiting the news of his first grandchild. “He’s not breathing!! They don’t know why, but he isn’t breathing. Please pray!” She didn’t even say “It’s a boy!” The plea for prayer was much more important. After a couple of minutes of explaining what was happening, her Father hung up and stopped their whole church and asked them to go before God’s throne to intercede for his grandson’s very life as they stood around the bonfire.

They could not get a hold of Anne and their Pastor was coming home from a camp meeting so they called another church member and again explained what was happening. Immediately she sent an email out to every church member asking them to join in pleading for his life.

Over the next hour and a half the midwife came in and out of the room saying things like “I don’t know what happened, his heart rate was good, his color was good, he just isn’t breathing.” And probably most insulting was the questions to the Mom who just went through labor without pain medication “Did you take anything today?” Of course the Mom said “Only the red raspberry you told me to take.” The next question was shocking if not appalling… “No, I mean like narcotics. I have only seen this before if the Mom was on narcotics.” The Mom who had never tasted a sip of alcohol, never smoked a cigarette, and had to be in desperate pain to even take Tylenol could not believe the implications being made.

Finally after an hour and a half they brought the wheelchair in to take her to see her son. She was thinking everything is going to be okay now, he just needed a little help breathing at first, no big deal. As she was being pushed out of the room she looked at her husband and said “That wasn’t so bad, I could do that again!”

As they waited outside the “NICU”, which was a tiny little room normally used as a closet and storage area, their Pastor and his wife and their daughter (who was good friends with the Mom) had arrived and were waiting to talk with them. The Pastor stood waiting to see the newborn with the couple. While waiting for permission to go in, they heard a nurse in the room say “Oops! Well I don’t know! I have never done that before!” All three of them commented on how weird that comment was and wondered what it meant as their son was the only one in the room with the nurses. The midwife stopped at the end of the hallway, waving her peanut butter crackers in the air, said “Good bye, I’m off to the other hospital to go deliver another baby.” And with that, she was gone.

At last they got to see their little boy. Their heart were broken at the sight of him with a breathing tube down his throat and sticky leads on his chest. His eyes were closed and he was lying completely lifeless. Even his umbilical cord was gone and in its place was an arterial line (IV into an artery). It was explained to them that they could not hold him because if that arterial line was bumped out of place he could bleed to death. They did not have a chair high enough for the Mom to sit beside him and see him so she sat for the next 8 hours on a hard bar stool.

The hospital staff forgot to bring the Mom food so the husband ran out at some point to the nearest fast food joint and got some for them. The couple was constantly asking questions about his ventilator and the setting he was on. Over the next several hours they were able to wean down his oxygen and remove the breathing tube. At one point he tried to cry but only shook and made a tiny little sound. That was the only sign of life he showed, though. Still thinking he was okay now that he was breathing on his own; Dad went back to the room and started to sleep. About an hour later, at 6am, the Mom finally gave in to her need of sleep and sadly left her newborn to go sleep in the same hospital bed as the Dad.

It was around 7am they knew their lives were about to change forever. The doctor walked into the room and woke the exhausted parents up with a harsh statement. “Your son just had a seizure. They are transferring him to St. Christopher’s Hospital for Children in Philadelphia. The transport team will be here in about an hour. Go back to sleep, you’re going to need your rest.” And turned and walked out of the room. Behind her, the new parents started crying and holding on to each other. How did this happen? He was breathing and seemed ok an hour ago? What is going to happen? Is he okay? GO BACK TO SLEEP, are you kidding?!

The ever rational husband said he was going to run home and grab some clothes and supplies. Since they had planned an early release, they thought they would be in the hospital for 4-6 hours after the birth and did not pack enough stuff. He assured the terrified Mom he would meet her at the hospital shortly. The paperwork was done to release Mom from the hospital and almost an hour on the dot the transport team was there. She walked behind a transport Nurse and EMT as they wheeled her tiny little man in an incubator down the hallway and out to the awaiting ambulance. Her mind was in a fog, she couldn’t believe what was happening. She couldn’t believe her little man was intubated again and just lying there so helpless. During the ambulance ride she was fighting sleep as much as she could. The transport nurse was a kind and gentle lady. She pulled out some blankets for the Mom to use as a pillow. She assured Mom to try to rest a little during the drive. When they arrived everything seemed like a dream, no make that a nightmare. The Mom felt as though she was a little lost puppy looking for his way home. They told her to wait alone in this tiny little room outside the NICU as they got him set up inside.

Within a short time, her husband arrived and was by her side as they walked each step of the way through the next 5 weeks… and has never failed to walk with her and help her every step of the way in the last 5 years.

Happy Birthday my precious Dillon! You are a miracle! Your life is a miracle. The doctors thought you were going to die, human reason says you shouldn’t be alive right now. The length of time you suffered through lack of oxygen (about 45 minutes before birth and about 45 minutes AFTER birth) says you should have left this earth long ago!

And yet here you are celebrating your fifth birthday – 5 full years and going stronger than ever! Thank you Dear Lord for never leaving us, for walking with us through every trial, for being our strength when we have no strength, for loving me even when I was angry at You, and most of all, thank you Lord for allowing us to be a picture of Your Grace and hopefully be a blessing to many lives as we continue to love and care for the special blessing you gave us.

About 2 hours after Dillon's birth...

Daddy and Dillon, again about 2 hours old

About 1.5 days old at the other hospital

This little video was taken in the NICU, it was one of the first times Dillon started to move. Daddy was working everyday so I took the video for him to see Dillon.

And now??? Check out his 5 YEAR OLD PICTURES by clicking here

Saturday, June 04, 2011

Truett Walking

Just in the last week Truett is really taking off with walking so I had to get a video of his first few, uncertain steps. Once I turned the camera on he took more steps than he has ever done before!

Here is the video!

It won't be long now!!

And his fourth tooth broke through this week!

Jay's school

Its been about 1.5 weeks (or maybe more, I don't know) that I taught Jay his vowels. I only taught him one day for a few minutes. Then I didn't talk about it again until I surprised him with a little "test". Out of the blue I asked him to go to the white board and write the vowels....
The only one he needed help remembering was E. Then the next day I taught him long vs short vowel sounds, he did amazingly well! (better than me - trust me!) One the road to full time reading!

Enjoying Summer

Some pictures of our family enjoying the summer!

Truett watching Daddy and Jay play... he wants to go and do everything they do together!

Standing in the driveway

Jay and Daddy playing

Friends of friends gave his car to Jay last year near the fall, he was afraid of it last year but this year he is loving it! And of course Truett goes along for the ride!

2 years ago Grandpa and Grandma gave Jay this from sprinkler and again he was terrified of it, but this year it has been fun.

... Especially with how hot it has been this last week!

They had a lot of fun!

I am surprised Truett just sat there for a long time and let the water spray him!

Today we thought was a church activity to pass out info about the church then a picnic after wards at a park, but that is NEXT week! So we found another place to go since we were all in the car with the picnic!

Jay took a picture of Daddy and Mommy for us.... don't we look great?!?! Best picture of me ever!

Memorial Day Picnic

This year we went to the church picnic again for Memorial day. It was SO HOT! We didn't think Dillon would last out there for more than a few minutes... but my ever thinking Husby had a great idea....

A box fan running off of a battery! In the shade of a tree, with the fan blowing on him, Dillon lasted several hours before he reached his limit. As soon as we put him down this huge branch fell out of the tree and almost impaled him! It just missed him and fell in between Dillon and Jay. Weird, but he was ok.

Truett HAD been wearing size 6 month jean shorts, but as we were eating I looked down to where Truett was standing and the shorts were on the ground. They completely fell off him, so I didn't even bother trying again!

Jay - the silly monkey!
Wow - here's a first! Josiah playing volleyball! I HAD to get a picture of him playing sports at a picnic!
We had a great time, and I'm not going to lie, I enjoyed the benefits of Dillon's fan too! It was HOT that day! Thanks Dillon and thank you Daddy for your great ideas!

Waterway babies neck collar/pool

This is Dillon's new little pool! It came with the neck collar for babies and/or special needs children. It is AWESOME! All the neck collars that CHOP tried were horrible, nothing actually held his head. The therapist at DuPont told me about this one so we ordered it for Dillon. It actually works! It holds his head above the water!

The little barrel pool and the next collar are only 100 plus shipping - I HIGHLY recommend this for any premature baby or special child. It fits right in our bathroom (although I moved it outside hoping the heat would keep the water warm). Everything for our special kids is SO expensive, but I thought this was a good deal to be able to do aquatic therapy no matter where you live!

Video can be seen here. (Don't mind Truett in the background he was past nap time)

Thursday, June 02, 2011

New Life Verse

Several years ago while in church I saw the verse in the Bible Luke 22:42 "Saying, Father, if thou be willing, remove this cup from me: nevertheless not my will, but thine, be done." From that time on I used that as my "life verse" meaning I often used that to find comfort with the situation we have on a daily basis. I felt a burden lift from my shoulders as I saw that it was ok to ask God to change the way Dillon was. I was relieved that even Jesus asked God for there to be another way. But - I also understood that meant my attitude also had to be but whatever Your will is, I will accept.

Last night I was in church, in the deaf class, where I have been attending the last several months to learn sign language. We had a guest speaker in and as he was reading one verse, my eyes moved across the page and I saw a totally different verse that captured my heart. Philippians 1:12 "But I would ye should understand, brethren, that the things which happened unto me have fallen out rather unto the furtherance of the gospel;" I am ready to move from my life verse being one of asking God to change things to now saying THIS my life verse! I KNOW the reason God allowed Dillon to be brain injured is for the gospel to go to people who might not have received it any other way! It is for the countless number of people we have come in contact with only because of Dillon. It is for the countless number of people who will take the story about Dillon that wouldn't take anything else that has Bible verses telling them of their need for salvation! I can honestly say the things that have happened unto our family is for the FURTHERANCE OF THE GOSPEL and if that was good enough for Paul to accept his beatings, stonings, prison and ultimately his death - it is good enough for me to accept Dillon's physical condition!

Wednesday, June 01, 2011


Truett took 7 steps today at Dillon's acupuncturist! This is the most he has ever done! Go Truett!! I can only imagine what it is going to be like in about 2 months.... ahhhhhhh :o)