Doctors are dumb!

First I need to catch up again. A few days ago, on Sunday, Jay turned one month! I can't believe it's been a month already. Exactly one week before that, it was one full year that Dillon has been home from the NICU. This one is easier to believe, it has been a long year, so looking back it does in deed feel like a full year.

Yesterday Dillon had three appointments in Philly. His hearing teacher's 22 year old daughter went with me. I couldn't find anyone so when she volunteered her daughter I took her up on it. It was very nice of this girl, who had never met me before, to be at my house at 6:30am and not leave my house until 6pm! Thank you very much (if you ever read this)!

Appointment 1: Feeding Team
Summary: Waste of time
Explanation: We got there and the team wanted to know why we were there to see them. Okay, they have Dillon's records in their hands - why on earth do they feel the need to actual make me say "uh DUH! because he can't suck or swallow!" But anyways...the speech therapist confirmed with a stethoscope that she did hear a SWALLOW! Praise the Lord! However, they do not know if he swallowed to his stomach or if it went into his lungs. For reasons I do not understand, and have a call into them today to make them explain it to me again, they will not do the saliva gram to see where he is swallowing to. This makes me so mad because if we knew it went to his stomach we could start to give him food, if it is going to his lungs then we need to know to keep a better eye on him to make sure he doesn't get pneumonia. They did suggest a car seat bed since Dillon is having a hard time in the upright position. They want him to increase his food because he's underweight. Really?!?! Dillon is under weight?!? I never would have guessed! So they want me to increase him from 700ml to 800ml of food a day slowly...in two days! Okay people, that is not slow. One of the doctors asked me, "Has anyone ever talked to you about a trachea?" WHAT IN THE WORLD IS WRONG WITH THIS DOCTOR??? Why would she bring that up, he is doing great! Yes he still labors to breath a little, but not enough for a trachea, she needs to stick with doing her job of "feeding team" (because she was having trouble with doing that) and leave that up to the lung docs - who she knows I am seeing next week. I was told their only suggestion was to see GI but oh wait, they know I am already seeing them next week as well. When asked, I was offered NO suggestions on how to increase the frequency or effectiveness of Dillon's swallows. In fact, they went as far the opposite direction to tell me that the vibration I am doing with him has absolutely no proof of it working, but to "continue it anyways because he is so severely injured and not getting sensory things, that who knows, maybe it will do something for him." What a waste of my time, they gave me no new ideas, told me what I am doing is ineffective, and told me they aren't going to help me determine if I can give him anything by mouth.

Appointment 2: Urology
Summary: Good
Explanation: Everything checked out fine, the doctor just wants to follow up in a year.

Appointment 3: Ophthalmology
Summary: Why do I even bother?
Explanation: First of all, we didn't even get seen for an hour and a half after my appointment time. I tell the docs all about Dillon's vision, that he only tracked once and that we sometimes can get some reaction to lights (sometimes he seems to "find" the light with his eyes). So what does the doctor do? She pulls out a light blue beanie baby bear (Keep in mind with CVI they see red and orange better than any other color) and puts it in front of his face. At this point, I was either going to yell, be very rude, or cry...so I remained silent. But I really wonder where these people went to school. They didn't even give Dillon a far chance to show them what he can do. They should have used a colored flashing light, or at the VERY least a black and white and red object. I asked about a therapy technique I have read about in "What to do about your brain-injured child" (I'll explain that in another post) and the other doctor said "Don't get your hopes up, there's no proof that it works." Not according to the book and the research in it. He also told me that he doesn't need to see Dillon for a year. Why? I asked. Because "There isn't going to be any change in him, so I don't need to see him." He had just finished telling me that since Dillon's vision wasn't better by a year it isn't going to be. Well thanks a lot for writing off my child, Doc, but if it's alright with you we aren't going to! Oh, and he also informed me that since Dillon's cheeks are broader than his skull it shows how badly hurt he is, another reason why we aren't going to see any improvements.

So, how's that for a day, for you?

More Pictures and Videos

I think I'll drive you (and me!) crazy now that I know how to use YouTube with all the videos! But I hope you enjoy them...since so many of you are so far away and don't get to see the boys I like the idea of letting you watch them as they grow up!

Isn't he sweet?

I think this is the first picture of me with both of my boys...I have to get more of these!

I love how he fell asleep...so cute!

Matching outfits, resting on the bean bag

I'm rock climbing!

Don't I look like a little Marine, especially with the High-and-tight Daddy gave me?! (We were letting Dillon's hair grow so we would have enough to send away for a hair anaylsis, so we finally cut it last night and sent that away today. I'll let you know when I get the results.)

Daddy is teaching them young....

Videos:

Brotherly Love

Daddy and JayDonn making faces

Daddy playing Ball with JayDonn

Pictures and Video

My sleeping angels!

Daddy likes to tease JayDonn when he is hungry by letting him suck on his nose.

I tired to get a picture with JayDonn's head up and his eyes open big, but he put his hand up just as I took it - silly lil boy.

A family in our church gave Dillon this big bean bag for his birthday to help with positioning, but JayDonn enjoys it too.

We took Dillon and JayDonn out to our little pool tonight. Since it wasn't extreamly hot today the pool water was pretty cold. As soon as Si put JayDonn's feet in the water he started to cry. Si got him in to the waist, but JayDonn did not like it one bit. I got Dillon's feet wet and e pulled them up and at one point he sighed. But he did better than JayDonn. Keep in mind JayDonn hasn't even been in a bath tub yet because his cord just fell off. After a short "swim" the boys got in the tube with Daddy. It was oh so cute! JayDonn started to cry, then when he realized it was nice warm water he relaxed and almost went to sleep! Silly boy! Dillon started to wiggle when he got in.

Click here for the video where JayDonn opened his eyes for the first time ever. Daddy caught it on video!

You Tube Video

I am trying to join the world of "You Tube" so that I can share videos with ya'll.

Click here to see Dillon "swimming".

If the link doesn't work here is the URL http://www.youtube.com/watch?v=sinDvGBD6us

Someone please comment and let me know if the link worked. Thanks

JayDonn Daniel Kuenzi!!

Okay, it is taking me a while to get to this...but we are blessed beyond words to announce that JayDonn Daniel Kuenzi was born June 29, 2007 at 5:41pm. He is healthy!!! My water broke at 7am so we rushed to the hospital and sat there till 2:30 without contractions when they decided to start a drip to get the contractions going. Once the contractions started (where they actually HURT, that is) it was only about 30-45 minutes is my guess. I pushed through 2 contractions and he was born! The doctor ended up being one from a different practice because the one I was supposed to have was in the OR doing a c-section. The new doctor was nice though. JayDonn was born with his hand above his head, and sure enough he is constantly putting his hands on the top of his head. His face was a little gray so they suctioned him (he came out so quick the fluid probably didn't come out as much as it should have). This caused a huge scream and his face was instantly red,, not pink, but red. Josiah and I stood there crying over how amazing he is. He cried when Daddy flashed the camera in his face, he jumped when doors were shut, he wiggled all around, he knew instantly how to nurse. Everything was so different. Since the doctor didn't know us at all to know about Dillon - I wonder if she was wondering why I kept saying "He cried! Thank you Lord, he cried!"
Dillon met JayDonn shortly after he was born, of course I don't think either of them really had any idea, but it was cute for us. Later on we saw that anytime JayDonn is within reach of any part of Dillon - arm, hand, knee - he sucks on poor Dillon! It really is quite cute.
Dad and Mom Kuenzi and Hannah were here helping until the 4th and my parents arrived the 4th until Monday. So I have been on my own since Monday. Things are going okay. I took my first trip out with them yesterday - boy do we draw attention! Me pushing the double stroller, everyone thinks they are twins until they look in, and JayDonn screaming which draws even more attention! Ikes! But I was able to hand out one of Dillon's tracts to the cashier at walmart and the other cashier instantly took it from her to see what it was too.
JayDonn doesn't cry too much, he really is a good baby. He will be awake for up to two hours at a time sometimes and he will just look around and play with his fingers. One night he was crying just to be held so Daddy put him in the boy's room in the crib (he is usually in the bassinet next to my bed) and let him cry for a bit. He didn't do that again the rest of the night or the next couple nights.
That pretty much sums it up - JayDonn's first two weeks of life! Thank you to all those who prayed for a healthy baby! He is, and what a blessing! It has been hard, having a healthy baby after Dillon. It was hard to see JayDonn lifting his head at one day of age almost as well as Dillon can at 13 months, to see JayDonn making more connections with us than Dillon has ever been able to do, to hear him cry, to see him eat, to watch the funny faces he makes with his mouth, etc. I have thought of it as being like peroxide. When I was about 7 I stepped on a nail, my dad poured a bottle of peroxide on my foot and I remember screaming my head off because it hurt so bad. today, however, I am not sure if I can find the scar on my foot to know which foot it was. The stinging peroxide helped heal my wound. JayDonn is going to be my peroxide. It stings, it hurts, it tears my heart out to now fully see just how injured my precious Dillon is, but one I will heal and God is going to use JayDonn in that healing process.
Oh yeah, we are starting to do fund raising for the Oxygen treatments for Dillon. My parents are having a yard sale in August where people from church and friends have donated things to sell. The yard sale will not have prices, they will accept any reasonable offer and it is being advertised as a fund raising thing for Dillon, so we will see how that goes! I have to make an appointment next week with the branch manager at the bank to set up an account for the money to be held in until we are ready, this way too, if people wanted to send the money directly to the bank to know it is more legit they can.
One more thing... I am getting the process going on nursing care. If I can figure out why Dillon is having so many secretions (soaking through full bath towels folded so it is 4 layers thick) at night and help correct this then I will just get the nursing care of one day a week so I can run errands. If I cannot fix his secretion problem I will have to get someone for at nights so the poor boy doesn't cover himself with secretions every night.
Okay that's it!
(Well after I wrote that I remembered - Josiah starts a new job on the 24th, it is a step forward in the direction he wants to go in, so he accepted the position)

Thursday - Monday (Plus my 22nd Birthday!)

Thursday - Hannah and I went to my doctor's appointment for JayDonn. I was told I am 3 cm dilated and 90% effaced. The doctor was extremely nice, but told me not to go far from a hospital and to have my bags packed because this kid was going to come...soon! Of course we all got excited. With Dillon I was 2cm and 40% on Tuesday and on Friday night he was born, so surely being 90% would mean he would be here even sooner right? Josiah even brought me home flowers from work instead of waiting till Friday - just in case JayDonn came before then. They were beautiful roses. Then Josiah and I went to the hospital - not to have the baby! - just to see where he is going to be born. When we came home, Hannah had set the table so beautifully with my roses, a chocolate cake she made, a birthday card from her, and a card from Dillon that he wrote himself! It was a sweet surprise.

Friday - I woke up worried that JayDonn could be born on my birthday - it would be a nice birthday present, but I think he would like to have his own day. Hannah and I tried to decide what we should do during the day since I didn't want to clean on my birthday. When the mail came we saw the pictures of Dillon I ordered on line had arrived - so we decided to scrapbook! Josiah took us out to Applebee's for dinner, it was very good but with the appetizer he ordered and the fact that we were going to split both meals, I never even touched mine. So we took it home, and all three of us had enough for lunch on Saturday.
Saturday - Josiah was working all day on his new scooter (he is selling his bike and got something that will get better gas miles). He needed to run to the store for something, and since I had just told Hannah about how my nails were done for Dillon's birth she suggested to Si to take me to get them done. (Last time my co-worker did it). So he did. I have never had them done so I didn't know how to ask for what I wanted, and since they don't speak much English..... Needless to say it didn't turn out too well. Instead of doing pink with white french tips, they did clear with pink tips! Josiah did not like it at all and made me go back to get them redone. The lady was nice and was going to do it for free, but I wanted to tip her for redoing them (even though I know they were laughing and talking about me in another language since the one lady leaned her head out to look right at me and then went back to what she was doing...) The rest of the day was spent by Hannah and I finishing up Dillon's scrapbook. I am not 100% done, but done as much as we could with all the pictures I had.

Sunday - We went to church - bet you didn't see that one coming! :-) No baby though, the afternoon was restful, then we went to church again. On the way home we used 3 coupons for free ice coffees at dunkin donuts.

Monday - Everyone this whole time has been panicking about JayDonn coming. Thinking my labor is going to be too short to get to the hospital, that I might have to drive myself, that Josiah might not make it, etc. So I was worked up about why he wasn't here yet as well. At the advice of many people I called the doctor to see if they would check me again since I was having back pains and hurting whenever I walk. They said they didn't want to see me. So we went on with out day. Dillon had a nuerology checkup a little over an hour away. Sure enough his appointment was only 10 minutes, nothing has really changed, no need to go back on seizure medicine unless I see something, and make another appointment in six months. I had been feeling sick to my stomach all day and it was getting worse so I went to the clinic anyways. I was finally seen there and they said I was running a little temperature - no joke I felt like I was burning up! They also took my blood pressure twice. The first time it was 180/? and the second it was 150/? Since nothing had really changed (I was only 3.5-4 cm now) they sent me to the main hospital to have my blood pressure monitored and blood work done. They were afraid I had preclamsia (Sp?). Hannah and I started thinking of all the stress that has been put on me over the length (or lack there of) that this birth maybe we knew it had to be the cause. Sure enough, by the time we got to LVH my blood pressure was 104/? . It stayed down the whole time I was there - yup that would be stress folks! Anyways they wanted to do something to check for protein even though I didn't have any, and it hurt so I told them to stop and the nurse agreed with me. She said to tell the doctor "no" because there was no reason for it and the doctor knew that because before doing it her answer as to why it needed to be done was "I want it to be." Some answer! Plus she lied and said it wouldn't hurt - so nice an loud I told the nurses while they were trying to "Tell the doctor she lied - it DOES hurt!" Another one of the doctors asked me if I had thought about what pain medicine I want should they decide to keep me and break my water. I told her none, I also said - no scissors. She basically said "yeah right" I told her I didn't need it with Dillon and that I would kick them if they tried to come near me with scissors. Her answer? "Well, then we will just blindfold you." Hannah and I were shocked! That is so dumb, if I don't want it and don't need it then don't do something that will hurt, require stitches, and possible hurt for years to come, just because you want to! Finally, the blood work came back that nothing was wrong with my liver or kidneys so I was allowed to go home.

Tuesday - I slept better last night than I had in months! It was so nice, I wasn't hurting nearly as bad and at times, at not all. Last night, we told our family that no one is allowed to call and talk about the baby, pregnancy, how I feel or anything of the such. It is stressing me out too much. I need to plan for this baby to come near July 14th, like planned, and just let it be in God's hands as to when labor starts. He will do what is best. If it isn't safe to have him in the car then God will allow me to get to a hospital on time. He will allow Josiah to get there if that is something I really NEED (obviously I want it, but God doesn't promise to meet our wants, only our needs.) So please, do not ask about the baby - we will tell people and get the word around asap if my water breaks and/or i have contractions because I will be headed to the hospital right away. Hannah and I were able to clean/unpack a room that really needed done but I kept putting off today. I don't think this is "nesting" I think this is "sleeping" I actually had some energy.

Prayer Requests - Please pray that the baby will come in God's timing and that details would be worked out. Please pray that he would be healthy, and that I would have an easy labor like with Dillon. Please pray that the doctor I end up getting is not like the ones I saw yesterday - I want someone who will try to let me do things more naturally so the birth won't be so bad (it would be really great if it were a female doctor! I had one female I really liked - Dr. Jen could you please pray she would be the one there when I have the baby?)

Thanks! Hope you enjoyed the LONG update!

Happy 1st Birthday Dillon!

Dillon is now ONE! Wow, what a year it has been. Can you believe its been a year? I can't. It has been a long, hard yea - but it has also been a year filled with blessings of God. From the fact that Dillon lived, to all the progress he has made, to all the prayers that have been said on our behalf - God has truly blessed us.
Josiah's parents and sister came into town Friday night so on Saturday we went to Lancaster County (Amish country) where Mom and Dad used to live when Josiah was very small. I guess I will just tell about the day as I put the pictures in.

We started off the day in the outfit Grandpa Schnarr bought him since they couldn't be here, but due to an unforeseen incident....

...Dillon had to be changed into a spare outfit.

I am not one for taking pictures of people's houses, but when I saw this one from the street I just had to get some pictures. Isn't it beautiful?

Josiah and Hannah - however went close to the house to get more - I would have just taken them from a distance, but it was worth it.

This is their view from the back of the house. A pond where you can swim, walk out into the middle of it, and a wonderful view of the valley!

Josiah standing so you can see the view from the font of the house.

Yes, we are those annoying people that take pictures of the Amish kids as we pass them.

These people still live in the house next to where Mom and Dad used to live from when Si was about 2-6 years old.

Naps are required, even on birthdays!

This farm has homemade ice cream (that was soooo good!) and a drive thru - so even the horse (well this one looks more like a pony) and buggies use the drive thru.
Dad standing near the cows we watched them milk

Wouldn't it be nice to see signs like this in more businesses? (read their commitment)

Josiah and I near the cows

We ran into people from church at this farm! Now you have to understand, we were about 1.5 hours away from church, in the middle of no where at a little farm. How weird!

Josiah wanted a picture of him with the little calf.

I am told he likes Bull Dogs because it is the symbol for Mack Trucks (My dad like them too, but because they are the Marine Corps symbol) What am I to do with these men?!? :-)

No comment...

Even though Dillon's stomach was upset and he seemed to not feel well near the end of the day from (our guess) the antibiotic he is on, when we got him home he should had a birthday surprise for us! He held his head up for quite a while - straight off the ground! What a blessing. I know my om was praying Dillon would do something special for us that day and he did. For any of who might have been praying that way as well, thank you - it was encouraging!

Look at him go!

"Hey, I'm not Superman - I need a break!"

"And here I go again!"

Can you tell we go a little crazy with the camera when he is lifting his head?

Aunty Hannah helping Dillon to scoot across the floor

I really think he might learn to crawl eventually. He seems to enjoy moving and lifting his head, he just has to learn the coordination of it all.

Mommy and Dillon after he worked so hard! (by the way - those are my new glasses)

Family photo - Happy Birthday Buddy!

Kissy time - One year old is still young enough to have pictures of your mommy kissing you on the Internet without it being embarrassing!

He is such a little man!

He is a gift from God that we love with all our hearts! Dillon is our little boy, we wouldn't trade him for anything.

Aunty Hannah and the birthday boy

THANK YOU for all the cards, letters, emails, phone calls, and ecards for Dillon on his birthday. They were special to read. I am planning to keep them for his scrapbook.

It was so nice to have him awake and alert for his birthday celebration

Grandma and Grandpa came out just for his birthday (it is about a 6 hour trip each way)

Birthdays are such fun!

Well that's all, finally! Actually we have a lot more but I just put some of them on. Aren't you glad?! Thank you again for all your cards, etc for his birthday. I thought it was going to be a hard day, but we kept busy and it really wasn't. I am sure here soon I will have a good cry, but with the progress he is making with his head, how can I be sad? Hannah is staying with us now until JayDonn comes so that I will have some help and can have someone ready to take care of Dillon when JayDonn decides to make his arrival. It is going to be such a help having her here, Josiah and I both are very grateful for her willingness. We go for a hearing test in a few minutes, I will have to let you know (if he sleeps so we can run the test) if his hearing is any better now with the tubes in his ears.