Update

 (Pictures from week in WV, first several are from our 3rd Anniversary at Tygart Lake, then some from Cooper's Rock, then from all the family on Tygart Lake on Saturday)

Wow, it has been a while since I have blogged! I have got to stop waiting so long! My blogs end up being too long as I update you if I don't keep up with it. I'll try to keep it quick!

• Dillon's day nurse, Barb, quit. She hasn't been here in over a month. She hurt her back and is still on light duty. We really liked her and how good she was with Dillon. However, she told me today that she has taken another job that is more "light duty". We need to start with a new nurse, so please pray for God's will here. I will be meeting one, possibly two, next week to decide who to go with.
• Last Monday we took Dillon to the doctor and he confirmed what I suspected, ear infection. He started Dillon on an antibiotic. 
• We left right from there to go to WV to see Josiah's family. It was our anniversary last Wed. so they watched the boys and let Josiah and I go out on day trips and such. It was so nice. Thank you SO much for all your help with the boys Dad, Mom, Hannah, and Dan (he was there too)! And HAPPY 3rd ANNIVERSARY (again) Josiah, I love you so much! You are a wonderful husband! I couldn't imagine life without you, you are my best friend.
• On the way to WV Dillon aspirated. He threw up milk and then coughed literally 30 minutes without stopping! It wasn't until I gave him a breathing treatment in the car that he stopped. But he was just put on the antibiotic, so we just gave him the extra oxygen he was needing. Then one week later, at home he did it again, at least he was still on the antibiotic. He is doing better now, still needing a tiny bit of oxygen, though. I have started masking him again. I had stopped when Barb quit, but I think it is necessary for his health that I continue with it.
• A night nurse started Sunday, so we should have all 7 nights covered again by two different ladies. They are both very sweet to Dillon so hopefully they will stay.
• Yesterday I took both boys to CHOP by myself! Dillon had an appointment for pre-surgery stuff for his tubes (which go in on Sept 15). It wasn't too bad! I stopped once going and once coming on the side of the highway to help him, but other than that we did ok. It took a while to unload, once Dillon and all his stuff was on the wheelchair, I strapped Jay to me with the baby carrier and away we went! I met a mom there with the same kid kart (wheelchair) that we have. Her daughter has CP and is almost two years old. She was so cute! I asked her how she was doing and her mom told me that she just had blood taken so not too good and right then the little girl smiled so big! Typical little kid, trying to prove Mom wrong! :o) I was able to give her Dillon's story, I think she will probably relate to much of what is in it. (be prepared, I am about to get on my soapbox for a few minutes!): There are so many people hurting because of disabilities, CP in particular. 2-3 Children per 1,000 born in the US will have CP; this is about 10,000 a year! Some may be mild cases, but many are severe, some even as severe as Dillon. 80% or more marriages end in divorce once a disability enters the family through a child. I even read that the life expectancy of a mom with a special needs child is 10 years less then Moms without special needs children. People are hurting! I know how badly I hurt and I know I am not the only one out there. We, as Christians...as Churches, need to not forget this mission field! We have the answers, we know the God who forgives sin, Who cleanses us and makes us whole, we know the God who is in control of everything, who is merciful in letting this happen to our children in order to give us time to come to repentance...yet are we sharing it with the parents who are hurting so bad? I am so annoyed with Americans, myself included, that we live in the mentality of "It won't happen to me!" Wake up! I had the most picture perfect pregnancy possible, I had an easy, short labor, I was young, I was healthy, I exercised during my pregnancy, I was newly married, just starting our life together...IT HAPPENED TO ME and IT COULD HAPPEN TO YOU! Just as we aren't promised a tomorrow, we aren't promised healthy children. These people who seem so different and you are scared to talk to - may be you in the blink of an eye if God chooses to allow you to have a child with disability. Please! Don't be afraid to talk to parents when you see them with a special needs child, more often than not they will be thrilled to know someone cares about their child and isn't just staring at them like a freak show. Trust me, every time I am out with Dillon I feel like a freak show! People turn their heads 180 degrees when we walk by and often do the whole "ohhhhhh poor baby" thing. Please - don't. Just love them, just show them that Christ loves them and gave his life for them. The song I love has the words "How can we reach a world we never touch, How can we show them Christ, If we never show them love" You want to make a lasting impact on a family, to go along way in planting a seed for Christ? - open your heart to a special needs family; be willing to learn from them, be willing to pray for them, be willing to listen to their burdens, and be willing to cry with them, most importantly - be willing to love them as Christ does. 

Ok - I will get off my soapbox...for now. Please know this is not directed at any person, it is just what has been on my heart for a while and I felt with was the perfect time to share it. 

Congratulations!

Last evening my mom called me from an activity at her church. Her Pastor and his wife have four daughters, three of which are married. The last two to wed each have a child. The first daughter, K and her husband N have been married for six years and have not had any children. Well last night my mom told me K and N have a little boy! (huh?)

Well I was able to talk with Mrs. B and find out some of the story... I hope I get this right. If I get something wrong, my apologies.

Basically N was working in the hospital on the OB floor and there was a lady that had her baby boy at 31 weeks, he was only 3 pounds something. N knew she wanted to give him up for adoption but due to privacy laws could not say anything to the mom about him and his wife adopting the baby. Somehow, someone else told the mom though and she called N and K! The baby is almost 7 weeks old, is up to five pounds and is out of the hospital. K has not seen the baby in person, but on Sunday (tomorrow) she will be handed her band new baby boy!!

CONGRATULATIONS TO K AND N

AND THE VERY HAPPY GRANDPARENTS, AUNTS, AND UNCLES!!!

Isn't it neat how God works?!

Fries with your Ketchup?

You bring your fries, I'll provide the long past due, much needed ketchup. 

Let's see, where to start? Hannah was with us for 7 weeks! What a blessing that was! Thank you Hannah, you were such a help and encouragement to me. It was so much fun having you here. It was like I finally had a younger sister that I have always! Some of the highlights of what we did while she was here: Hannah died my hair twice, we went to the salon to get our hair cut for my birthday (Thank you to Josiah, my Dad and Mom and Grandpa and Grandma for doing that for me). I discovered while it was fun it is NOT worth paying that much in the future. We took pictures in a park for a surprise 3rd anniversary present for Josiah. (He saw the thumbnails on the computer so he knows it has something to do with pictures but I can't explain any more yet).  We did a bunch of other things too, but I can't remember them all right now! Thank you again Hannah!! And thank you to Dad and Mom K for letting Hannah stay and help us, we know you missed her while she was gone!

The stye Dillon has had since May is almost gone, Hannah and I popped it (not the dumb way the doctor told us to, though) It is still there but is so much smaller than it was!

We have not had a regular night nurse since May. We have on average 2 nights a week. Hannah left on Sat July 26 and on Monday July 28 my day nurse was called off for 3 weeks due to back problems. It has been a long two weeks, which is why I haven't had time to update my blog.  We are surviving, ONLY because God has been so good to us in letting Dillon sleep every night from 12am - 6am without beeping at all! We have him sleeping on his stomach on a foam with a cut out for his tube with .5 L oxygen. He seems to love it! It takes the pressure off his tube but allows all the drool to come out of his mouth so he doesn't have to cough it out. What a blessing!! I would be a complete zombie by now if God wasn't helping Dillon to sleep so well!

We are still seeking a nurse, if you know of anyone interested in the job, please please PLEASE give them my name and number and get them in contact with me!

JayDonn has 10 teeth now, he is almost done cutting his top molars. he is also taking step on his own. He will usually only take 2-5 steps but he is gaining confidence everyday! We have also seen him walking in the kitchen when he didn't know we were looking!

Jay is playing more and more with Dillon. He loves to kiss Dillon's head and try to lift Dillon's head for him. He also will go to the basket, get the chest percussion tool and start doing chest PT on Dillon. He is even trying to suctions Dillon's mouth for me now. He is starting to be such a help!

We have depositions next week for Dillon's court case. Tuesday the Attorneys are coming to our house to explain what it will be like and Thursday we will go to Allentown and meet with the defense Attorneys for the depositions. 

Aunty Anne leave Thursday for Thailand for about 9 months. We are going to spend the afternoon together on Wednesday. Will you pray for her as she goes over to help missionaries on the field?

JayDonn is also starting to talk some. He says "bad" (which he got from me talking about something else, I don't even tell him that he is bad or anything!!!) he also says "no" ( I DO tell him No a lot!), I have heard him say "yellow", "apple", "I got it", and a few other things I can't remember right now. He is growing up so fast!

Dillon seizures are normally very good. He has 1-2 a day. Today he is having a bunch, they are short, though. I think it is because I have not been masking him the last couple of days. I have to set a stopwatch online to buzz every 5 minutes so I remember to mask him for 30 seconds every five minutes. Dillon's whole program is on hold since Barb isn't here to help. I have my hands full with his care, Jay's care, cleaning, cooking, and laundry. I just can't do his program, but he is by his bright lights and black and white pictures all the time and I have been doing my best at masking him throughout the day.

Well that's enough for now, pictures will come later.....maybe! :o)

America's Best Glasses Is a SCAM

Ok folks, you know I don't normally get on here and bash a particular company. However, when they scam people so incredibly much I can't help but tell you so that in the future if you ever see the advertisement for 2 pairs of glasses for $69.95 you will remember that they are scamming you and not waste your time or money! 

America's Best Contacts and Eyeglasses are thieves!

Hannah called ahead of time and asked if there were any restrictions on the deal of 2 for 69.95 and was told as long as you pick the glasses marked 45.95 they are included. Well after waiting for almost 2.5 hours to just get the exam they then wanted to charge an extra 88 for the lenses. Hello? Have you every ordered a hamburger and had to pay extra to get the bun? No! That should be included. I am not going to waste your time with all the details of how they scam, but please just remember it and NEVER go there! If you want to see how horrible the company is just do a quick google search on America's best = america's worst or america's best complaints! You will find HUNDREDS of complaints.

I hope this helps keep someone else from wasting time and money (they didn't get any of our money!)

Pneumonia...again

Yesterday during Sunday School Dillon threw up a little bit of milk because he was coughing so hard. He then went into a 10 minute coughing spell. I couldn't get him to stop. I had to have an usher get Josiah out of church to come help me with him.

Today we took Dillon to Dr. Gelman and he confirmed what I thought; Dillon's milk had gone into his lungs and he has pneumonia again. He said the next 24-48 hours are critical as far as trying to stay out of the hospital. As he gets started on the antibiotic his secretions will get thick and he may have even more trouble maintaing his oxygen then he is now. If we can't keep his oxygen at 90% or higher on 2 Liters or less we will have to have him admitted at CHOP.

Will you please pray that God will heal Dillon of this pneumonia, that his oxygen levels will be good, and that GOd will heal Dillon so that he won't have pneumonia again? This is a big prayer request, to pray that Dillon won't get pneumonia, but last night's message was on faith. I want to write my notes from the message on here with what it meant to me - and I will, hopefully tomorrow. But will you have faith that God could heal Dillon and pray?

Doctor Appointments

We started our day at 6am. Hannah told me Dillon had been coughing and making frustrated sounds since 5am. He was arching his back and would not stop "complaining" so I told her to put him on his belly. (We had him sleep on his back because of his tube site) As soon as we put him on his stomach he did not cough again and he held his head up for 10 minutes. He was complaining that he made him sleep on his back!! :-)

Dillon, JayDonn, Hannah, Barb and I pulled away from the house around 7:10am. We arrived at our appointment in King of Prussia. The ENT looked in Dillon's ears. He said he did not see a perforation in the left ear anymore, however there was fluid behind his ears. The right ear has wax and fluid. The doctor suctioned his left ear and pulled out a ball of wax/blood that was the size of a pearl! Inside that ball was Dillon's tube. The right ear still has the tube but it is not in the right location to do its job. August 28 we will have an appointment for discussing anesthesia and September 15 he will get tube placed again. 

The next appointment was in Paoli and we were two hours early for it. Dr. Gelman was able to fit us in an hour early. JayDonn was given three shots and had his hemoglobin checked. Dillon and JayDonn have both grown in height and weight. I don't have the exact numbers in front of me but Dillon is about 24 pounds and 32 inches and JayDonn is a little less than 20 pounds and 28 inches. 

We then went to Wendy's and sat there for a while while we had lunch. After having a frosty we left to find the next appointment in Exton. After realizing that we were going the wrong way on 30, we found the other CHOP satellite. We were still about an hour and a half early so we sat in the waiting room. Jay had a great time playing with their toys. When it was our turn, we took Dillon back and saw the nurse practitioner. She said that Dillon's site has bad yeast, which is why is it so red. I thought this was due to the stomach acid, but it isn't. Maybe that is why the Malox is not helping it! She wants me to put an anti-fungal cream on him 4 times a day for 5 days AFTER it is no longer red. Her guess is that this will take 2-3 weeks since it is so bad. She said in her experience cauterizing the granule tissue helps 82% of the time, where as a simple cream help 68% of the time. This cream will take about 2-3 weeks to work, if it will work. We decided not to cauterize the site right now, I did not want to put him through all that pain when it wasn't even a promised outcome. Her conclusion is that burning the kids is not usually worth it unless the cream doesn't help, if it is bleeding or if the child is in a lot of pain. 

The nurse also said Dillon's tube is too short. He still has the same size tube from when he was born. She measured how long it should be and increased his size. Dillon had been using a 14 French 1.0 cm, he how has 14 French 2.0 cm. This means the distance between the top of the balloon and the outside tube is a centimeter longer. When the tube is too short if forces the balloon to rub on the inside of the stomach lining and wear it down. 

We got home around 4p.m. this evening. It was a long day! Since Hannah was up with him last night so much she took Jay up to his bed and she also took a nap. We had to wake Jay up at 8 and he was back in bed by 9:45. The poor baby was so tired since we got him up so early. Dillon has been resting so well tonight. 

I washed Dillon's tube with soap and water and put the cream on it. Then after several hours we took the 2x2 off and let it air out for several hours. It is already looking better! Tonight I washed it with soap and water again then put the anti-fungal cream again for him to sleep on it tonight. We are taking great care to make sure we don't spread the yeast (Jay has a small yeast diaper rash). We are using gloves to change Jay's diapers, to wash and clean Dillon's tube, to hook him up for feeds, or anything else near his tube. 

Praise the Lord we didn't have to cauterize his tube today! I would have felt horrible making him go through all that pain! His tubes won't be until September, please pray he won't have any more ear infections while we wait for that day to come. By the way it should be same day surgery, they do not think he will need to spend the night in the hospital!!

Eye, ears, stomach

On Friday, July 4th, around 10 p.m. we had to take Dillon to the ER at CHOP. We had called the doctor as blood was coming out of his left ear and they instructed me to take him right away since we cannot be sure of his pain level. 

We had had a good day at two picnics from people in our church. When we came home Josiah and I were working on stuff in the basement and Hannah called to me that there was blood coming out of his ear and that it was a decent amount. Hannah stayed home with JayDonn and Josiah and I took Dillon to the ER. We were there until 4 a.m. They said Dillon's left ear drum is perforated and the tube in it has fallen out. They put him on an antibiotic, ear drops with an antibiotic and steroid, and Motrin for the pain. I also have to put 50% hydrogen peroxide in this right ear as it is completely clogged with wax. Poor Baby! His seizures have greatly decreased now that he is on the pain killers. We probably saw a spike in seizure activity because of the level of pain he was in. 

The poor little boy also has had a stye on his left eye lid for a long long time now. It went away for a couple days and has been back eber since. It has been huge! We are trying something we read in a book of Amish home remedies that my mom bought me. It finally seems to be working!! The stye is getting a little smaller and there has been a little bit of junky stuff in his eye from the infection starting to leave! I hope it goes away completely! And soon!

Tomorrow we will start our day around 7 am when his nurse comes, early. We will then head out to King of Prussia for an ENT appointment to see if Dillon needs to have the tube put in his ear again. From there we will go to the doctor at 11 in Paoli for Jay's one year shots and Dillon's weight check. From there we will go to the G-tube nurse in Exton at 2 for her to look at Dillon's  site. It has been red and open for a little while now and we cannot do anything to get it to heal. She will have to look at it and see what needs done, she may cauterize it tomorrow. 

Friday is going to be a LONG day, with some pain for both boys. JayDonn will be getting shots (but as long as he is thirsty and I give him a drink as soon as they give the shot he has done fine before) and Dillon with getting his ears and G-Tube site look at and especially if he gets it cauterized. 

Birthday Party with the Church

Explanation  of photos at the bottom (couldn't get it to go before the pictures)

Grandma Y 

Grandpa S
Jay was actually SLEEPING in this picture before the party. He was sleeping sitting up!!
People at the party - THANK YOU FOR COMING
Grandpa and Ms Barb helping Dillon. He actually had a really hard time at the party. We couldn't move him around, his oxygen was dropping low unless he was on his belly.




Quick family shot before laying Dillon back down
HAPPY BIRTHDAY MY BOYS!
Jay's first cake!!!!

Dillon and Grandma S
As you can see he had no problem playing with his cake.
Yummy! Can I have some more?!?

Ms Johanna and the boys' buddy Caleb
JayDonn helping Daddy mop the floor after the party
Caleb started drinking out of Jay's cup so Jay tried to help him to continue drinking it!
Don't they look alike?
So tired, he was asleep before we even loaded the van up!
Poor Dillon was having a hard time
Reclining chairs from Grandpa and Grandma. The boys love them. Jay climbs into his all day long and Dillon can actually sit comfortably in it.
The picture frames from by the cake. Dillon at 1.5 hours old and then now at two and JayDonn at an hour old and now at one! I love how these came out!

On Saturday we had a birthday party for Dillon and JayDonn at the church. My parents came in from Ohio for it. Dillon's nurse, Barb and her daughter were also able to come. We even had some visitors from South Africa! :-)

It was a wonderful time of fellowship and just rejoicing that God has been so merciful to bless Dillon with two years of life and JayDonn with one!

Here are some pictures; Enjoy! Thank you to everyone who came and made it a special day!

Happy Birthday JayDonn!

Birthday Boy! JayDonn's first Birthday

JayDonn and Mommy on his first birthday

JayDonn and Mommy on his first birthday
Playing with Daddy
Birthday party
What a face!

Aunt Hannah and JayDonn

Do you know how hard it is to get a picture when the new one year old is very tired?!

Sunday, June 29th, was JayDonn's first birthday! I cannot believe that a whole year has past since we heard his first cry. I never understood the importance of the phrase "Cherish the Moments" until I started seeing Jay mature before my eyes. He is testing his balance now by standing without holding on for a few seconds at a time. 

Dear JayDonn,

Happy First Birthday my little man! You are my right hand man. You are growing up so fast, I can tell you are going to be such a big help with your big brother. I can't believe how much you have changed in the last year. I remember when Daddy and I found out we were going to have another baby, when Dillon was only a few months old. Daddy started jumping up and down at work, he was so excited! I started to cry, but they weren't tears of joy. I was scared to have another baby so soon. I was scared that I wouldn't have the strength to be Mommy to a new baby while caring for Dillon. I was scared I wouldn't have a strong enough heart to love Dillon and a new healthy baby. I was even a little scared that you wouldn't be healthy. Then when the doctors told me they thought you were going to have spina bifida I didn't know what to do. I thought about having another child with pysical and mental disabilities. I started researching all the possible interventions to help. Then, after knowing what would be avaiable if needed, I listened to a preaching video online and was able to leave it in God's hands. I would have to wait three weeks to know if you had Spina Bifida or not. You would think it would have been a horrible three weeks, but it wasn't. I left you in God's hands. I knew that God would hear my prayers and heal your back and close any openings, or He would give me the strength I needed to care for you and Dillon. It was during this time that I found your name online. "Jehoviah has heard"!!! Amen! Either way, Jehoviah heard our prayers and was there for us step by step. At 20 weeks, they did an ultrasound and confirmed that you were healthy! Praise the Lord! 

God knew exactly what he was doing when He put you in our family. You bring such joy and happiness. Your Daddy and I love you so much! God was so merciful and gave a child that will play by himself while we are busy helping Dillon, you sit in your crib for several minutes (I don't even know how long) without crying for me to come get you. You even have crawled up the stairs to put yourself to bed (I had to follow behind you and lift you into the crib). You are learning to sit still in church. On your first birthday you sat in church for 35 minutes in Sunday School and 1 hour 5 minutes during the night service, plus then you continued to sit out in the foyer with your milk and snack! I don't know if I want any other children, because you are so good I have been spoiled. :-) Of course you still take a lot of work, but it is a joy to see you obeying and learning right from wrong. One day I hope to see you obey God and accept Jesus Christ and his sacrifice for your sins (even though you are sweet, you still have a lot of sins!)

JayDonn, you are the joy of my life. I praise God and am so thankful for you. As much as I want you to stay small and I want to cherish the moments, I am looking forward to you getting older and being more fun. I can't wait to talk with you and have you help me make dinner or watch you fix something with Daddy. Oh, and who can forget your smile! You have the most beautiful smile in the world!

I love you Little Man!

Love,

Momma

Birthday Activities

Pictures!!

Birthday Boy

Lifting his head while His Grandma S tells him happy birthday

"I'm a BIG boy now!!"

It's my 2nd Birthday!

Me with my nurse, Miss Barb

Jay's eating like usual

Grandma Y made Dillon a birthday cake!

This one was Dillon's own little cake (but Daddy, Aunty Hannah and Mommy split it)

His favorite place to be - where the food is!

Look at that smile!

Jay brings so much joy and laughter into our home

He has 6 teeth (Dillon has 8)

So happy before, so sad now. 

I just had to get some of these to tease Jay about later in life

Birthday Dinner! Salad with Asian sesame dressing and curry with chicken and potatoes!

Yummy! Dillon is sitting near the table that is decorated just for him.

Dillon's birthday balloon! It is a yellow smily face

Mommy kissing her birthday boy. (Hannah did my hair)

I think he liked all the celebration!

The family!

Aunt Hannah is here helping us care for Dillon at night for a little while until we get a night nurse. 

I like this picture

Getting ready to open cards and gifts

Jay really liked Dillon's gift

So much so that he was taking it across the room with him

Lots of cards!!

This one had a fuzzy part for Dillon to feel

THANK YOU TO ALL WHO REMEMBERED US AND SENT CARDS! WE APPRECIATE YOUR THOUGHTS AND PRAYERS SO MUCH

Yup, he's my child....you give him money and that is the ONE thing he kept hold of! :-)

His hat from Great Grandma K

Jay really doesn't like hats, but it is so much fun to put them on him

and watch him take them off

Clothes for my growing boy!

Where's my cards? ;-) Soon baby boy, just two weeks and it will be your day!

All of Dillon's gifts and cards

THANK YOU EVERYONE!!!!

I love my little boy!

Someone is getting sleepy...

or maybe he was just wanting some attention too

Birthday cake!!!

Blow out your candles Dillon

Lots of candles

Our family!

Okay, we know he isn't supposed to have any - but we just had to give him a TINY taste of his icing, it IS his birthday after all.

Jay loves the ice cream, but he has to wait until his birthday for cake

Tired after a long day of celebrating

Daddy enjoying Annette's cake. It was SOOO good! Thank you so much for making it for us. You are so sweet (crazy, but sweet!)

Yummy!

Birthday napkins

Mommy and her boy

Cherish the moments...

I used to hate pictures, but then I started thinking...I would rather have pictures where I don't like how I look and have the memories of my family then no pictures at all!

Look at me showing off on my birthday! I'm standing!! (With help of course, Dillon was supporting his weight I was just keeping him from falling over as he has no balance)

GOOO DILLON

You are the strongest, smartest, most determined two year old I know. I wouldn't be able to fight for life like you have all these months now. You are amazing Dillon!

I did have a moment of crying. Tears for what Dillon will never be, tears for what he has been through, tears for the trials we have faced.

BUT he is alive on his second birthday to hold my hand. He didn't die in the NICU, he is alive and doing great!

He's amazing

Daddy was reading the boys a story and told Jay not to touch the book. So what does he do? He grabs Daddy's finger and touches everything on the page. Crazy kid!

He is too smart for my own good

Enjoying our time together

Aunty Hannah talking on the phone to Dad and Mom after all the celebrations

Lots of pictures, I know. I hope you enjoy them and feel like you were here with us rejoicing in the miracle of a second birthday for Dillon!