Videos!

This video is not for the weak stomachs! Nah - it isn't that bad. It is just JayDonn being funny and suctioning his own nose and mouth. It is kind of gross but he thought it was funny. yes - we did make sure the tube was clean before letting him play. :-) Can also be seen here on youtube

The video below is Dillon. He is AMAZING! He was holding his head up for so long. The first time he held it up for about a minute and a half, then he fell. I let him rest for a few seconds then got him back up and he held it for another minute. Then after a minute rest he held it again for a good two and a half minutes! All on his own! I didn't touch him at all! Have I said how AMAZING he is?!?! Just in case - Dillon you are a remarkable little man! Keep up the good work! Can also be seen here on Youtube.

I will try to get more Christmas pics up later - I just HAD to get these up right away though!

Christmas Vacation Pictures

Hello from the cold state of OHIO! Here are a few pictures from our trip so far....

This is a good friend of my Mom's.. Jen and her son Jerold they came to see us today (Tuesday) and help pattern Dillon. I will put more pictures on of her helping later.

JayDonn eating some colored fishes "Rudolph" gave him. I'll explain Rudolph late in this post

My cousin N playing with JayDonn

This is the little girl I used to babysit, only she isn't so little anymore. Serena was the flowergirl in my wedding. We were able to spend most of Monday with her. I am so glad I got to see her again...I only saw her for a little bit at my wedding and only for about 5 minutes since then. Thanks for spending the day with us Serena!

JayDonn playing with Rudolph - isn't that an adorable smile?!

Rudolph is a family tradition that my grandparents started. Instead of stockings on Christmas morning, Rudolph siting int he living room for most of December and every once in a while there would be a little - stocking stuffer type - present in it.

JayDonn and Grandma S

Grandpa S and JayDonn playing with toys that Grandpa's employeer bought for the boys. We weren't able to attend their Christmas party the day we arrived in OH but were thankful for the offer.

Hope everyone is having a good time as this Christ-mas time is coming closer. Don't forget to remember what the real meaning about Christmas is, we all need reminded to keep our mind on the Christ on the cross not just the Christ in the manger.

A lot has happened...

A lot has happened since the last time I updated...


here is my little cowboy playing today.... I think all he needs is a cowboy hat and maybe some stirrups :-)

Tuesday Dillon was doing great during his physical therapy!

These are some of "Tiffany's Treats" pretzels... This year for Christmas I made every one pretzels. I mostly did chocolate with powder sugar. I made over 300 for people and didn't take a picture of it! The one below is white chocolate with coffee on top.

This one is white chocolate with sprinkles....(Yes, I am now taking orders for all occasions.)

Picture of me and my precious little boy...

JayDonn was letting Dillon talk on the phone. Dillon's turn is 1 seconds, JayDonn's turn is 4 minutes. I said he is sweet - I never said he is "fair" :-)

My WONDERFUL Husby turned 26 on Sunday! Happy Birthday my Love! Annette and Rudy had us over for dinner and boy do they make good food! We had a wonderful salad with cranberries and almonds in it, fried chicken breasts, steaks, baked potatoes, bread (which was Jay's favorite) and homemade cheesecake. YUMMMY! Then on Monday a sweet lady watched the boys so I could meet Josiah at work and go out to lunch with him. This is a picture from Chili's where we went. I even had them sing to him! I was trying to decide if I should or not since I know he doesn't like all the attention but I decided...why not?!?! :-) It was so much fun to go out *without* the boys! I love my boys, but it was so nice to not have all the machines, beeping, suctioning, crying, etc.

Josiah, I love you I am so thankful God brought me all the way from OH to PA just to meet and marry you. You are such a wonderful husband and father. You are my best friend, you make me smile when I am down and always help me to look to God when things get discouraging. Thank you for loving me and our boys so much! Happy Birthday!!

Last Thursday Robin went with me to our Ladies Christmas Tea Party after work. We had a fun time. The whole thing was so beautifully done. Thank you ladies who did all the work for that! Here I am in a Thai dress my sister bought me when she was in Thailand.

You can see more of it in this picture

Nursing situation: Wed and Friday of last week our night nurse called off. They told me he called off b/c his daughter is very sick. I asked does that mean he is leaving the country since his daughters are in Zimbabwe? They told me they aren't allowed to ask him. (**HUH?!?!** Not allowed to ask if he is leaving the country?) Well then they decided to call him on Sunday when I asked them to verify he was coming Sunday night and guess what no answer...all day. He has not called back yet. So we didn't have a night nurse all week. Sunday night we tried to sleep and get up when he needed us, but that was so many times we were exhausted. Monday night I stayed up till 4:30AM when Si had to get up to fix a work problem and he took over so I could sleep. I accidentally slept till 11:30! Tuesday night I was up till 5:30AM then Si took over and I slept till 10:30 Wed night I was so tired me sweet sweet husband slept on the living room floor next to Dillon all night so I could finally get some sleep. Isn't he sweet? Tonight and tomorrow night we have nurses then we are going away for Christmas and I have no idea if we will have nurses when we come back. Please pray we do! I can't keep going like this for long.

I will try to update with pictures over the Christmas holiday...but in case I don't have a

MERRY CHRISTMAS!

Tonsil Appointment

The doctor said that Dillon's left tonsil did grow back but it isn't too big. They think it is only blocking his air way by 20%, which seems like a lot to me but they don't seem too worried. She did say his Uvula is way too big! They want Dillon to go for a sleep study to see how he compares to the last one in July of 07. If they feel they want to take out the tonsil again they will most likely clip the uvula but that is very very painful surgery.

But at least there is no need to have surgery again...at least not yet.

My BIG Boys!

Sunday evening I was really down. I don't know why - I just felt discouraged. (Does any one else have those days - or is it just me?!?!)
This week has been an off week. Monday started with drama I didn't want to deal with. Then my helper called off so we couldn't pattern Dillon. Tuesday I had someone bring a puppy over for the day only to find out Dillon's is still allergic even though he is on allergy medicine (never mind it is a lot of work!) It was good to find this out so we will not let him be near family's pets at Christmas time. Oh, we also found out Jay loves to feed a puppy and to eat the puppy's food. Today my helper tried to come for me since we can't tomorrow but it didn't work out for her, my nurse had to leave 3 hours early, and my afternoon helper had to come an hour late. Everything is off! To top it all off - I am 99% sure Dillon's tonsils are grown back. In full force! The left one is taking up his whole throat...AGAIN!!! he has had tubes in his ears...TWICE, he has had his adnoids removed...TWICE, and now may need tonsils out TWICE?!?! We have an ENT appointment tomorrow to find out - so tomorrow will be off too! GRRRR I was never one to live by a schedule but in the last year of doing Dillon's therapy I have grown accustomed to my schedule.

So what are my big boys doing??

Dillon made Mrs Robin cry today with how well he crawled down his ramp! He crawled 8 feet and probably would have done a lot more but we had him on the floor and he couldn't go any where while on the floor. It was the first time she really saw him move that well! Praise the Lord!~ I need these moments! He did it so well again in the evening!

JayDonn slept his first night in a toddler bed last night. I set it up and right away he took his blankets to the bed and thought it was great. He went to bed at night and didn't get out once. I put him down for his nap this afternoon and again he didn't get out once!!! I am so surprised!!! And thankful! We are also working on potty training and he is doing great. Every morning he sits on his potty with a table I made him and eats breakfast and goes on the potty.

Wow they are getting to big and are such an encouragement to me when I am down! Please pray for Dillon's ENT appt tomorrow. If they are tonsils I want them out right away! I don't want him to have to wait for weeks to be schedule for surgery so please pray they will move quickly if that is what needs to be done.


jay waking up for the first time in a big boy bed!

Just for Fun....

I never do these things when they are emailed to me, but I saw this on my friend's blog (Anne) and since I have a few spare minutes I thought I would do it.

Bolded are the things AI have done:
1. Started your own blog Back in 04 with Josiah
2. Slept under the stars My family used to go camping a lot - although I was under a tent - same difference
3. Played in a band In 7th grade I joined band played a little with them and didn't learn a thing!
4. Visited Hawaii
5. Watched a meteor shower
6. Given more than you can afford to charity Does Faith promise count? If so I did this and it was amazinf how God provided it every time so I guess I really COULD afford it...
7. Been to Disneyland/world I was 13, we went to go visit my natural grandma. We had only met her one time before this - my mom is adopted
8. Climbed a mountain In Alaska when my sister and I went to seee some friends
9. Held a praying mantis We had a couple in our house last year
10. Sang/played a solo The only solo I have ever sung was at my sister's graduation party - I sang "Friends are freinds forever"
11. Bungee jumped
12. Visited Paris
13. Watched a lightning storm at sea
14. Taught yourself an art from scratch
15. Adopted a child
16. Had food poisoning
17. Walked to the top of the Statue of Liberty
18. Grown your own vegetables Tomatoes, cucumber, zucchini
19. Seen the Mona Lisa in Franc
e20. Slept on an overnight train
21. Had a pillow fight Of course! Also a lot of water fights!
22. Hitch hiked
23. Taken a sick day when you’re not ill
24. Built a snow fort Of course - we lived near Pittsburgh when I was little so we had lots of snow!
25. Held a lamb
26. Gone skinny dipping
27. Run a Marathon
28. Ridden in a gondola in Venice
29. Seen a total eclipse
30. Watched a sunrise or sunset - The year Josiah and I were engaged we sat outside on his birthday (December 14th) and watched the sun rise together. How romantic - and cold!
31. Hit a home run
32. Been on a cruise
33. Seen Niagara Falls in person Several times - my family used to go there for my sister's birthday
34. Visited the birthplace of your ancestors
35. Seen an Amish community Yup many times, my grandparents used to have a camp for Missionaries in an Amish community so I would spend the week with them - even been on a horse and buggy ride. Plus we live about 30 minutes from one so we have been there many times.
36. Taught yourself a new language Does Medical language count? If not - then no.
37. Had enough money to be truly satisfied When I was single and didn't have kids to worry about, I would work and save and I was just fine.
38. Seen the Leaning Tower of Pisa in person
39. Gone rock climbing Sort of - Josiah and I went to Cooper's Rock in August there are tons of huge rock to climb on - I don't think that is what this meant. But I have done rock climb walls....
40. Seen Michelangelo’s David
41. Sung karaoke
42. Seen Old Faithful geyser erupt
43. Bought a stranger a meal at a restaurant - two times people have done this for US because of Dillon though...
44. Visited Africa
45. Walked on a beach by moonlight We went to NC when I was a teen and my sister and I and our friends would go out walking
46. Been transported in an ambulance 3 times with Dillon I think, Josiah went once with him
47. Had your portrait painted Does the character things at amusement parks count? If so I think I was 14 for it.
48. Gone deep sea fishing
49. Seen the Sistine Chapel in person5
0. Been to the top of the Eiffel Tower in Paris
51. Gone scuba diving or snorkeling
52. Kissed in the rain Of course!
53. Played in the mud Where we lived growing up the court yard in between town houses was low in the middle so we would run and slide and see who could go the farthest!
54. Gone to a drive-in theater
55. Been in a movie Only a couple of times, the last one was before I got saved or right after
56. Visited the Great Wall of China
57. Started a business EcoQuest - failed. Pre-Paid Legal - failed. Tiffany's Treats - doing well. I sell about 3-4 cookies everyday after school!
58. Taken a martial arts class My dad taught us some when we were younger
59. Visited Russia
60. Served at a soup kitchen
61. Sold Girl Scout Cookies yup. I love thin mints and samolias (sp?)
62. Gone whale watching
63. Gotten flowers for no reason My husby is so sweet - if you go back on my blog you will see the ones he sent me for no reason. He did buy me some about 2 weeks ago too!
64. Donated blood, platelets or plasma
65. Gone sky diving
66. Visited a Nazi Concentration Camp
67. Bounced a check Don't remind me!!!
68. Flown in a helicopter I NEED to do this before the time may come that Dillon needs to go by helo or they won't let me go with him!!!
69. Saved a favorite childhood toy Maybe it would be better written sav ed childhood TOYS
70. Visited the Lincoln Memorial
71. Eaten Caviar
72. Pieced a quilt A neighbor lady when I was growing up in PA used to do this and she let us help her sometimes
73. Stood in Times Square Yup I was pregnant with Dillon and this was the time when Ezra and Gina got engaged!
74. Toured the Everglades
75. Been fired from a job
76. Seen the Changing of the Guards in London
77. Broken a bone
78. Been on a speeding motorcycle Sorry Josiah - yes I have been on a speeding motorcycle. Thankfully he doesn't normally speed - when I am on it.
79. Seen the Grand Canyon in person
80. Published a book - I am working on that right now!
81. Visited the Vatican
82. Bought a brand new car
83. Walked in Jerusalem
84. Had your picture in the newspaper I am sure it was in there a few times for school choir, play honor society those types of things
85. Read the entire Bible Not as many times as I would have liked
86. Visited the White House
87. Killed and prepared an animal for eating
88. Had chickenpox
89. Saved someone’s life I think there have been many occasions where Dillon would have died already...
90. Sat on a jury I wanted to and was called for it but they didn't make me because Dillon was about 3 months old
91. Met someone famous I shook President Bush's hand, and talked for a minute or two with Mrs. McCain, and for my older readers I think his name was Gorgeous George. (Grandpa - is that right?) I can't think of anyone else.
92. Joined a book club
93. Lost a loved one I have two little sisters in Heaven. Danielle (would be18 years old - still born at 6 or 7 months) and Katharina (would be 16 lived born at 2 pounds something lived only 2 days)
94. Made a baby Two beautiful Boys. Well God made them and He made them both perfect!
95. Seen the Alamo in person Last Christmas after Ezra and Gina's wedding right before we were flying back home
96. Swam in the Great Salt Lake
97. Been involved in a law suit We are still in process with the law suit over what happened with Dillon's birth
98. Owened a cell phone I have! My first one was when I was about 16, I currently don't have one though - costs too much since I don't use it that often
99. Been stung by a bee Ouch! Haven't been stung since I was little though.


There that was fun. 42 of the 99 and I'm only 23! Maybe I can accomplish this whole list before I get too old. (I'll skip the skinny dipping and the killing and eating an animal though!) We are at Mom and Dad K house. Mom K is working, Hannah is working, Dad, Josiah and Jay went to the store, waiting for Dad and Mom S to arrive in a few hours - so I had a minute to do this. It is just Dillon and I making (late) lunch.

Videos of JayDonn

JayDonn went over to Dillon yesterday to show him some pictures, but I am working on teaching Jay how to be gentle while playing with Dillon. Jay particularly likes Dillon's eyes. But if you have seen his eyes in person you know everyone loves Dillons eye/eye lashes! Click here for the video

(*I couldn't get blogger to work with the videos again so they are on youtube)

I don't know what prompted this, but JayDonn thought he was being so funny. We were all laughing (Mrs B, S, and me) she he kept on doing it. Click here to see my goofy man.

I hope my silly little boy put a smile on your face today, he makes me smile hundreds of time every day!

Cute Pics/ Videos of Jay

Just wanted to share some pictures and videos with you!

Here is my little man in overalls, a hardhat, and a giraffe in his mouth (don't ask - I think it is a teething thing)

I just love the overalls! I don't know why - maybe it is because I could never dress Dillon in them due to the tube. But honestly - couldn't this face win anyone's heart over?! HAHAHA
Josiah and I were sitting at the dining room table and we looked over to see JayDonn feeding Dillon his yellow pepper. It was so cute!
Here he is. I don't think Dillon liked the pepper too much! 

Two videos of Jay playing with Dillon are below - these were taken after he went all on his own to go play with Dillon. I am just speechless at the compassion Jay has for his brother. Dillon has never done a thing for JayDonn. Yesterday the nurse and I watched as Dillon was relaxing on the ramp (on his back head towards the top) Jay went over to sit right beside him and was just watching Dillon. Dillon coughed and after a few seconds Jay picked up the wash clothe that was near by and wiped Dillon's mouth then put the wash clothe back. Dillon has never kissed or hugged him, never given him a toy, never shared food, never makes him laugh, and yet JayDonn still has such love for his big brother. Amazing! God has given Jay a sweet spirit already, I pray we will raise him to continue this sweet spirit.

You have gotta see this one! Tonight Jay was in his high chair and I heard a weird sound - it sounded like a dog drinking out of a bowl. I looked over to see this....

Dad wants to get Jay a dog - I think Jay IS the family dog! heehee He has never seen a dog do this I honestly don't know where he got it from!

What DO we do with Dillon?!?

Many people have asked, What DO you do with Dillon? I thought I would give you a small look into our daily schedule with Dillon. I will try to explain what and why we do each thing. There are several video links, they are all short. Please take the time to watch them if you are interested in what it is we are doing all day every day.

Please note: I am trying to explain things as I remember being taught almost a year ago. If you have a brain injured child and want to know more information please contact The Institutes for the Achievement of Human Potential. Everything we have learned has come from them, they would be able to tell you what you need to do to learn more about these different things. Please do not try to do any thing you see here without learning from the Institutes first. Thank you!

First things first! This is a picture of Dillon's daily schedule before we start in the morning:

This is the schedule after we are done! I will explain each thing below. The smile faces are our key: :-( means he didn't do it :-l means he sorta maybe did it, :-) means his did it, :-D means he did a GREAT job at it! (Real technical I know - but Nurse Robin came up with it! heehee)

"Date" Need I say more? :-D

"Day" We record the day of the week as well as how many days we have done the program. We have completed day 233 on Friday!
 

"Light" as seen at the top as the first and last cell of the grid. This is light reflex. We stimulate Dillon's light reflex by shining a light in each eye about 5 or 6 times. We say "Light" as we do it. We are looking for Dillon's eyes to constrict fully, as soon as the light hits the pupil. When we started this a year ago, his eyes would more often than not stay as they were or only change by a little bit. Now they almost always have a full reaction. If he is sick or tired they may not. This is the first step in being able to see. 

To see a video of this being done click here.

"Balance" This is a very interesting technique! The idea is to lay Dillon on a mattress and let him pretend to be rolling down a hill. We started by only doing one flip (which is actually a half roll...from belly to back or back to belly.) we are now doing 2 flips at a time. One of us will lift the edge of the mattress up as the other one holds his arms over his head so he doesn't get stuck on his arms. Sometimes it doesn't go as smooth as we would like, but we are working on learning how to best do this. Dillon seems to like this a lot! At first he seemed a little scared - who wouldn't be?! - but now it seems like he is excited when he knows what we are about to do. His eyes will get big and there is just a sense of joy with him. After he flips his eyes are very big and sometimes his arms or legs go up in the air. This is working all the dimensions of the inner ear, where our balance is decided. Since we aren't touching him, Dillon is learning his own balance in stead of learning to use my balance. Dillon has no clue what is up, down and side ways. This will help him learn this, which should help him to hold his head up. Why lift your head if you think it is just floating in space and don't understand that you are lifting it up? I think he likes it! He "flips" 4 different directions, 6 times a day.

To see a video of this being done click here.

"Grasp" I am sure many of you who are parents have seen how "strong" your newborn is. If you put your finger in their tiny hands they can hold on so tight that you can lift them off the ground. This is do to their grasp reflex. When something is put in a baby's hand they hold on, they later will learn who to let go. When we started this, Dillon had no grasp reflex. He just wouldn't hold on to anything. We can now get him to hold a lot, and sometime all, of his weight in his hands. We count down as he is holding so he will know how much longer he needs to hold for. We are at 4-3-2-1 right now, next week we are going to try 5-4-3-2-1. We try the grasp 2-3 times each time, and we do this 6 times a day.

To see a video of this being done click here.

"Ramp" The proper name is Inclined floor, but ramp is much shorter. This is where we put Dillon on an inclined floor so that every little movement of an arm, leg, finger, or toe will move him forward. Dillon has learned a lie: There is no reason to move my limbs. We need to teach him there is a reason! As he starts to move more and more on the ramp we will slowly start to lower it until he is able to move on his belly on a flat surface (called "crawling"). I already posted a video of what we want Dillon to do on the incline floor, but this video is what is more typical of Dillon on the floor. Would you pray we will see him moving more? Dillon is on the inclined floor up to two minutes each time at least 6 times a day.

To see a video of the this click here.

"Stand" This is normally done in one of two ways. One being the video I already posted where Dillon was under the ladder holding on while standing. But the more common way we do this is to have him sit in front of me, I pull his feet back to a normal position for standing and then try to hold them flat with my feet. We then put the rod in his hands and try to get him to stand in a proper way. Sit down in a chair and pay attention to how you stand. Now sit back down and pretend you are 9 months pregnant when you go to stand. Dillon naturally wants to stand in the pregnant way, but we want him to stand right. We then have to watch his feet the whole time because they will twist and turn all sorts of ways that is not good at all. His pelvis is push forward so hard it takes all my strength to keep it in positioned right. He pushes his head back extremely  hard. I often have to use my head to keep his head up since my hands are so busy with the rest of him. I will tell you, him standing gives him a work out - but it is also a workout for me! We normally do this when we are doing grasp, and we do this 6 times a day.

To see this done click here.

"Pictures" We bought black and white cards and some colored cards from the Institutes that have the word clearly written on the back. These are what we show Dillon every day. We choose 3 cards and show him only those three all day. The next day we get three different ones. We hold it about 12-16 inches from him and always use a lot of light. We tell him what it is he is "looking" at ("Cat, Dillon, this is a cat.") and give him about 30 seconds to find the card. Then we will turn it over and show him the word and tell him "This is what we call cat" A lot of times Dillon does not pay any attention to us, but sometimes we can see his eyes sifting back and forth over the picture/word. We don't know what he is able to see, but we have to keep giving him opportunity to try.

To see a video of this being don click here.

"Auditory" This is where we stimulate Dillon's startle reflex at random times during the day. We bang the boards together up to 10 times in a row and look for any sort of response. Anything from his eyes moving, blinking, fingers moving, coughing, etc. Anything that we think could be a reaction to hearing we stop and record that number. For instance we might see it at 4 so we write 4, if there is no reaction we write 10. More often than not he has 10s. We have to find out what else we can do to try to stimulate this startle reflex. 

To see a video of this being done click here.

"Patterns" This is what we need three people for. All of you have seen me say I need help! I need three people! Nurse Barb and I have been doing the patterns since March and saw no progress in Dillon. We finally have three people for the last month and have seen a lot of progress! The idea is that we are teaching Dillon's brain what it FEELS like to crawl. You can only learn things through your senses so we have to teach him what it feels like. We rub his arm and leg on the table as we take them down - just he would be doing on his own. We do a homolateral pattern with him as this is the first neurological way to start crawling. I turn his head (VERY VERY wet, gross, and slippery!) from side to side which helps with the inner ear balance. It also makes it a lot more enjoyable for him rather than his head rubbing on the table the whole time. We do this for five minutes, 8 times a day, with at least 10 minutes in between patterns. The teen girl helping us comes at 3 and stays till the nurse leaves at 6 so we are able to get all 8 done in this time.

To see a video of this being done click here.

"Masking" This is something I have not heard of anyone other than the Institutes doing,, but it is AMAZING! I carry on me a little timer and every three to five minutes to goes off. I go in to Dillon and place a mask over his mouth and nose. He starts breathing in carbon dioxide (CO2) and the CO2 makes his brain tell his lungs to breathe deeper. Once he starts breathing a little deeper than normal we start the clock and go for 30 seconds. (For all you medically inclined people - Dillon's bicarb levels have been checked many times while we have done this and they are excellent) This also helps because CO2 dilates the blood vessels so more blood - and more oxygen - can be carried to the brain. Pure oxygen constricts the blood vessels and less oxygen arrives at the brain - which causes more seizures. The masking actually helps the seizures. We have been told of kids who can't swallow or cry - just like Dillon - who will suddenly start these things after months of masking because their lungs are strong enough to do those things now. If any of you have ever had a bad asthma attack like I have, you know what it feels like when all your energy is being spent of trying to gasp in that breath. I can't talk, can hardly walk, and feel too weak to keep my head up when I get a bad attack. Dillon lives in this state every minute of every day of his life. I don't think there has ever been a time of easy breathing for him. Can you imagine having a bad asthma attack for 2.5 years!! After 2.5 days I literally start thinking I am going to die,, I just can't imagine it. Masking works! You may not understand it, and you shouldn't try it without learning from the IAHP how to do it, but I can tell you it is making a difference with Dillon! Since the Institutes have not seen Dillon yet (the first appointment is about 4,000-5,000 - we want to do it but just can't) the nurses are not allowed to do my masking. Which means that I am running from whatever else I am trying to get done to go mask every 3 minutes. I do 3 minutes because sometimes we have therapists here and I have to skip a lot, it kind of balances out. But I challenge you try this for even an hour or two. Set a timer online or on your stove for 3 minutes. Go do your house cleaning, laundry, dishes, etc. But every time it goes off stand there for about 45 seconds and then set it again and go back to cleaning. For those of you who have told me you want to know what it is like for us this is a good way. There is no way for me to help you know the emotional part of having your son so injured and disabled, but this would give you a good idea of that we do all day. (Please let me know if you tried it!) On the weekends I don't do nearly as many masks as I have to have some time to get other things done, but it is so important for Dillon I think I need to mask at least every 10-15 minutes. He just does SO much better when we are. It helps his cough and keep his lungs clear, he can breathe deep and keep his oxygen levels up, helps reduce the seizures, helps him be more alert, helps him coo more, etc. 

To see a video of this being done click here.

"Notes" This is where I record how many people we had that day (Nurse/No nurse, S from 3-6, etc.) We also record any good things Dillon did, anything not so good like if he is sick, as well as appointments and other things that may have prevented us from being able to get the whole day done. We keep all these papers so that I can look back and see progress and what I did differently and so the Institutes can see them and help us make necessary changes.

I hope this gives you a better idea of what it is we are doing with Dillon, why we have been saying we need three people, and why I don't have time to do much else! :-D Will try my challenge with the timer and then pray for me. I need a lot of strength, dedication, and stubbornness to keep on top of all this. Especially the masking as it is so easy to forget. (It will amaze you how fast three minutes go by!) It is so important for Dillon's health to stay on top of this. Please pray for me, I really need God's help to not give up, to not slack off, and to stay encouraged. I have been doing this all for almost a full YEAR now and it has only been the last 2 weeks that we have seen a lot of progress. It is hard and very slow - but so worth it!

SNOW!

SNOW!

Ok not real snow - at least not yet! Dillon's vision teacher brought fake snow with her for Dillon to play with. It was cool and everything! Dillon loved it! Watch this video of him talking away with his hands in the "snow":     Dillon playing in snow

He is so cute! As soon as we took his hands out he stopped "talking" to us. I have never seen him react so happily to a tactile thing!

Great video!

Yes, I have ANOTHER great video of Dillon! Since Blogger is still having trouble playing my videos, please click here and get it from youtube.

We have seen so many good things from Dillon recently. I just want people to understand again - just because he does something once doesn't mean he is always doing it. For instance - he has not come down the ramp like he did on Friday. We have not been able to pattern since Wed though. Yesterday we did it with two people but the teen girl was sick so we couldn't do it properly. 

Just keep praying for these little steps as they GREATLY encourage me and pray that he would consistently do each and every little step again and again for me!

Thank you!!!!!!!!

Very cool video!

Hello everyone!
Thank you for all the wonderful, encouraging comments left on my blog and emailed to me about Dillon crawling. Let me show you another little "step" in the right direction.... (Don't mind Jay without his pants on - he is too skinny! He literally crawled out of them as he went up the steps right before this video! I think he needs to get a little chunkier!)

Blogger seems to be having trouble playing videos - you can go here to see it on youtube if it doesn't play for you.

Pretty cool, huh? All I can say is PLEASE KEEP PRAYING! I am doing all I can to pray and work with Dillon. God is the only One who can allow our work to continue making progress in Dillon. When we started this program I said that I didn't think he would ever be able to move around or learn to walk or even creep, all I wanted was for his vison to improve so he could communicate with it. Well, we have a long way to go with his vison - but we are seeing improvement all across the board!

I want to especially thank my nurse Robin, the teen girl S, and Mrs B who have been working with us.

Robin drives 50 miles each way and was offered a job in her own neighborhood but turned it down because she wants to help Dillon and believes we will see him crawl across the floor one day if we keep working. She never complains about all the work, she is always encouraging to Dillon and me. (And Jay is her best buddy. He loves that she brings him lunch almost everyday! :-D ) THANK YOU ROBIN!

S has been coming everyday after school for three hours. She could be out hanging out with friends or doing any number of other things, but is willing to come here to help with Dillon and Jay. We have been patterning for a long time, but only with two people. The key to a lot of these sudden changes, I believe, is because we finally found someone to help so we could have 3 people everyday and do it right. S I don't know what I would do without your help, THANK YOU S!

Mrs B Thank you for being so willing to work around our schedule to help us when we need you most. Thank you for being willing to drive a little distance to come every week, we need your help and are grateful for you. THANK YOU MRS.B!

Jay talking on phone

This is a video of Jay talking to Grandpa and Grandma K tonight on the phone. He walks all around when talking and stops to let Dillon hear. He gave Dillon a few kisses too. He talks to Grandpa and Grandma K weekly and Grandma S daily. He LOVES the phone - no matter who I am talking to he thinks it is for him. Crazy boy!

PRAISE GOD!!!!!!!!!!!!!!!!!!!!!!!!!!!!

PRAISE THE LORD!!!


I am still crying as I type this, Thank you Lord!!!


People keep asking me if our hours of working with Dillon are working, check out these videos that I just took a few minutes ago!!!





Blogger is having trouble playing the video, if you would like to see it and it doesn't work, please click here to see it on youtube.





Again, if you have trouble playing video click here to watch it on youtube.






HE IS MOVING! Actually MOVING himself down the ramp!


ISN'T OUR GOD GOOD?!

Election Night

I have been very congested recently, so tonight when Obama started to pull ahead in the election, I went to bed. I was suddenly awakened to a ton of shouting and screaming and horns going off. Obama had won. My stomach dropped. My heart cried out to God to have mercy on our nation.

People were jumping in their cars and driving all around all the while yelling F*** McCain. Which in case you don’t know, we are the only ones on our block openly supporting McCain. After having our house egged twice on Thursday night and having a teen say he was going to burn our house down, I am not surprised at the method in which people choose to celebrate.

Josiah and I started taking down all our McCain signs. Let’s face it; I am happy a black man could be put into the highest office in our nation. That says a lot for our country and how far it has come. It is just that I cannot support a man who stands for everything the Bible stands against. People are walking by saying “My President is Black!” and “Obama, Obama, Obama 08”. If you don’t know what Obama stands for and what the Bible stands for, I understand their joy.

While I will not endorse President Barack Hussein Obama, we must honor him as the man God allowed to be in leadership over us and most importantly we must pray for him. Josiah told me he remembers praying every night for President Clinton when he was in office. Every time an important bill came to him Josiah and his family would pray he would make the right decision, he never did, but they still prayed. This is what I want JayDonn to learn. He must pray for the people in leadership, complaining won’t change them but prayer could. He has to obey the laws of man, as long as they do not contradict the laws of God, and respect the men in leadership even if we don’t agree with them.

I am reminded of the song that has the lyrics, “I’ve read the back of the book and He wins!” Let’s not forget this; we are going to be in for hard spiritual times in the near future. We may face what other countries are facing in losing our right to preach openly the gospel and the Bible, we will most surely face God’s wrath as the country legalizes more deaths of innocent babies, but let’s not forget – God has already won it is just a matter of time!

Matthew 24:36 “But of that day and hour knoweth no man, no, not the angels of heaven, but my Father only.”
Matthew 24:42 “Watch therefore: for ye know not what hour your Lord doth come.”
Mark 13:32 “But of that day and that hour knoweth no man, no, not the angels which are in heaven, neither the Son, but the Father.”
The last verse in the Bible says, “He which testifieth these things saith, Surely I come quickly. Amen. Even so, come, Lord Jesus.”

Come quickly, Lord Jesus, come quickly!

Prayer Update

From my sister this morning:

Thanks for passing the prayer requests along.

We are getting ready to head back up there to see him. They were treating him for asthma. Sounds like he has a little bit of his aunt in him. :) When we arrived at the hospital...the one with the peds unit that takes his insurance is 45 minutes away... he had very bad expiatory breathing, His whole stomach was sinking in to take a breathe and he could be heard acrossed the room wheezing. It was so pathetic. Every other time, we have been able to treat him at the doctor office level for this. But as you know each attack can get worse quicker with asthma. We are sure what set it off that this point. 

Anyhow, when we arrived at the hospital, they gave him a double treatment then two more normal ones back to back. When they got him to a room, they gave him more and then, it was so late, we left the room so he could get some sleep, he WASN"T going to go to sleep with us there, he kept sitting up and standing in the crib waving at us! :) We hadn't eaten at that point so we went down to the cafe, while we were gone they decided to put an IV in. Which the nurse was so excited that he still liked her after wards and didn't even hit her. Daddy would have held him if we were there, but they said he did wonderful. There was no way I could stay there last night, without risking the other baby, so we talked to the nurse she said they were only going to wake him for treatments and let him sleep the night. I just recently talked to the nurse, so we getting ready to head up there, he is awake and ready to eat. But I know his schedule is is probably already asleep again, so we should be there when he gets up again...for the day.

So that is where we stand as of now, the nurse said he is responding very well to the treatments, and should be able to go home this afternoon.

Gotta get going,
Thanks for prayer and passing it along,
Love,
V

Please pray....

Please Pray I have a prayer request for you all to please remember over the next few days:

My older sister is pregnant - due Christmas day. She was in the hospital from Friday until this morning because her contractions came back. She has had them before and is on medicine to stop them but was still having some. She still has about 8 weeks left till her due date. Her son was born about 5 weeks early, so good chance this one will come early too. Please pray for her to be able to carry this baby as long as possible.

Also, her husband is sick and has a fever. To top it all off, her 13 month old son has the high fever too and is having trouble breathing so he was admitted this afternoon to the hospital. They said they will keep him tonight and possibly tomorrow night. All I know is that they are giving him breathing treatments and he does have an IV. My sister is having more contractions tonight too.

I know they would appreciate your prayers for them at this time. We know how hard it is to watch your precious baby struggle to breathe and be in the hospital all the while being pregnant. It is stressful to say the least - so please do remember them in prayer.

Thank you!

Little Men update

DILLON - The picture is a little dark - but that is because Dillon and I were snuggling together! I love him. He has been on oxygen for about 3 weeks non-stop now. For the first time in a long time he was bearing weight again in his legs yesterday and today. Today I got him in his loaner stander for the first time since the pumpkin patch. Hopefully he is starting to get better. Please pray he will be able to come off the oxygen soon and return to baseline. He is also getting about 6 teeth, but they come in so slow since he can't shew on things. His gums look so red and swollen and oh, so painful!
Dillon's night nurse called off Thursday night and for tonight, she was sick. His nurse for the other nights has been coming though. Tomorrow will be hard since Thursday night I was up about 40 times with him. One of his day nurses quit this week. She didn't like the drive (the one that was 24 miles away quit - the one coming 50 miles each way is still with us). So we will be without a day nurse for 2 days a week most of November then in December our nurse, Robin, will start doing all 5 days! We also have a 15 year old girl from the neighborhood coming everyday after school to help with Dillon's patterning. Mrs B from church is coming one day a week too. It is all going to work out perfect in December! Robin needs to leave early one day a week, so that is the day Mrs B. will come and we can pattern during the day. The other four days Robin will be here till 6 and the neighbor girl can come from 3-6. Perfect! What a blessing!


Ok, so Daddy made me laugh right when he took the picture, but we were resting together.

JAYDONN - he is a crazy little man. But he has such compassion as I have never seen in a 1.5 year old before. He is constantly rubbing Dillon's head, grabbing a towel and wiping his mouth off, trying to put Dillon nasal oxygen tube back in if it slips out of place. He kisses Dillon's head all the time and tries to get Dillon to lift his head when on his belly by "lifting" it for him. He is starting to learn to clap for Dillon when he is on the ramp. If Josiah and I are not fast enough when Dillon's monitor goes off, Jay will go running over, get down and look at the machine and then is even starting to push the mute button. I cannot believe what a big help he is and how much he truly loves his big brother. Dillon is so blessed to have him as a little brother! JayDonn is also cutting more teeth and is learning to be silly. He loves to say "uh-oh" if he drops something or if I am holding him (he wants me to say "spaghetti-o" and then throw him in the air or pretend to drop him!)


Well, Jay has been napping long enough - I have to go get him up so that's all the update for now!

Taking shape.....

The idea is starting to take shape - literally! My mom is so sweet and supportive of me. She can't help it - it is her nature to give the shirt off her back if she thinks someone needs it more than her. After talking with her about the idea to sell goodies after school she sent me candy chocolate and molds (and a bunch of other stuff) in the mail!

Here I am with my first chocolate covered pretzel! (You know - just in case it becomes a big hit and I become a franchise I have the very first pretzel!)

Then I ate it!! (Had to taste test, of course!)

2 for $0.75 (Soon I will start the gourmet ones which will be 2 for $1.25 or $1.50 - not sure yet how much it will cost me since I haven't made them)

Here are my first attempts at Solid Chocolate Lollipops. I learened a lot from this first attempt and am sure the next one will be much better. I am thinking of selling these big ones for 1.25 and smaller ones for 1.00 as they take a lot of time to paint.

Here are the pretzels! Some are drizzled with white chocolate, some with dark chocolate. Yummy!

I gave about 10 of them out to kids in the neighborhood yesterday to let them taste test, it was funny to see some of their eyes get huge when they tasted it and liked it a lot! One of the guys even went "yummmmmm" when he tried it. Some of the kids came back asking for more! (Which I said I was only giving 1 per person and only for today.) I told them I will start selling them on Monday after school with Hot Chocolate ($0.50 a cup). So we will see how it goes. I think I am only going to do the candy/pretzels and hot chocolate for now until I see how it goes.

I'll let you know!

New Idea in the works - Please help!

I haven't blogged in a little bit so I thought I would tonight. I wanted to share with you my new(est) idea on how I can earn some money from home. Pastor has preached a few times on the Spiritual side of the economy and what we can do as Christians practically if things get worse. When he said that there are ways to make money from home, I just kept saying over and over - "I have no skills, I have no talents, I have nothing to offer!" If I could make money for loving my kids and caring for them that would be one thing, but other than that how is a Mom with a active 18 month old and a so severely disabled 30 month old who requires 8 hours of non-stop therapy going to make any money from home?!?! Our parents are helping us with the costs of hiring people to do Dillon's therapy (THANK YOU, THANK YOU, THANK YOU!).

Well, God started a seed of a thought and it is starting to really take off. I want to share it with you, ask for any advice if you have done something similar and anything else you can suggest about it.

My idea? We are in an area full of teens! They get out of school and hang around the streets all afternoon/evening. What does every teen want as soon as they get home from school? FOOD! Hot, fresh baked cookies, muffins, breads, brownies, and candy. And maybe some hot chocolate since it is so cold out. My mom and my in-laws have given me lots of ideas and I have talked it over with a teen girl who has been coming every afternoon to help with Dillon's program. The teen girl thinks it would be a great hit!  

Here are the specifics that I am thinking right now...

• Only be "open" from 3-4, if it is a big hit maybe from 3-5 
• Each day of the week would be a specific thing (Chocolate chip cookies, brownies, banana bread, blueberry muffins, and ?? Not sure on the 5th one yet - any suggestions? If I can find soft pretzels to warm up maybe that, if not I don't know yet.)
• Everyday I could have hot chocolate and/or mochas (adding instant coffee to hot chocolate - I do this often in the mornings and it is good!)
• Everyday I could have chocolate dipped pretzel rods
• Everyday I could have other molded chocolates (example: bite size chocolate with fresh ground coffee on top - I have made these before and they are good! and chocolate in the shapes of the seasonal holidays)
• My mom suggested maybe carmel apples

I have to price each thing but friends of my mom are doing the candy part of this and they say it is easy and they are making a decent amount. They sell two pretzel rods for .50. I could decorate some with a different color chocolate drizzled over them or sprinkles or mini chocolate chips or, or, or the possibilities are endless!

Okay - so please let me know if you think this is something that is a good idea considering the area we live in. Many of the teens don't go home after school b/c no parent is home - so no mom home to make them hot baked goodies. Some of the kids at the high school have to eat lunch at 10am in order to get everybody in so they are hungry when they get out at 3pm!

Please leave any suggestions for me. Any advice, warnings, precautions, etc. I need some input!!

You can email me at tiffanykuenzi@gmail.com

Thanks!

Meeting Mrs. McCain!

This morning Josiah got an email saying that Cindy McCain was making a secret trip to the office Blue Bell. It was not advertised except to the volunteers. So of course we had to go! There were only about 150 people there, so it was pretty neat.


Here is Jay walking around while we waited.



















Miss Robin feeding Dillon



















Here she comes in the motorcade...






































It was a little dark because my flash isn't good enough, I am sure I can brighten it up - but I just want to get the pictures on right now.























Here Mrs. McCain is talking to Dillon. We gave her a copy of Dillon's Story and asked her to give on to Gov. Palin! She used to be a special needs teacher so you can tell she is comfortable talking to the special children. It was a once in a life time meeting that's for sure!



























Some of her "crew" took these pictures for us. Our Nurse, Robin, stayed late so we could go. It was very sweet of her (plus she didn't mind getting the opportunity to shake hands with Mrs. McCain either!)

Sarah Palin Rally

Sarah meeting another Down's child today. This was not our video as we weren't able to get as close with the wheel chair.

We went to a Sarah Palin rally today in Lancaster with the boys. The line was like a mile long and when we were near the end someone told us there was a different line for people with disabilities. So we walked back and got in that line. There were over 10,000 tickets given out and they had even more people than that as many including ourselves were able to get in without tickets. It was really warm out in the sun, but where we were standing it was very cold. The boys did great though and Jay even fell asleep in my arms!

This is the sign I made, it has a front and back and it on two broom handles so we could hold it nice and high!

Here is Sarah walking out - of course she is holding Trig in her arms!
Giving Trig to his Daddy...
Josiah held the sign the whole time since Jay was strapped in the baby carrier to me and eventually fell asleep.

Lots and lots and LOTS of people!


It was fun, probably the only time we will get to see her in person, even if that was from far away. We wanted to go on the field but they weren't letting wheel chairs down there.

P.S. If you are visiting my blog and were at the rally today - please leave me a comment and let me know! Thanks!!!