Thursday, November 10, 2011

Make-a-Wish Endless Pool!

Make a wish had approved Dillon for an endless pool to do therapy in. It was our desire to enclose the pool so he can use it year round instead of 3 months a year. The Lord provided the pool and the funds to do the enclosure....

We got to use the pool tonight for the first time! Amazing! God is SO GOOD to us. Dillon LOVED it! He was moving and kicking and going all around the pool on his own. With his neck ring we don't even have to hold him (we just have to be near if he coughs to make sure his head doesn't go under a little) so he can swim around the whole pool himself! I will get more pictures and videos, I just wanted to get a few from tonight!

And I'll say now - Blogger has really been upsetting me by flipping my pictures when that is not the way I uploaded them and I do not know how to switch it back....

I took these in the last few days as it was finishing up...
Filling it up....

Dillon and Daddy in the pool for the first time!

Jay going in - he was scared at first but then he had fun. He even swam for a few second without anyone holding him (his swim suit has floatation things in it)

Poor Truett was scared. As long as he was splashing Daddy, holding on to someone and holding his ball he had fun though!

We are so grateful God has provided these things for Dillon and our family to use. It was so great to see Dillon "free" in a way he can't be anywhere else. I am so excited to see if he will get stronger from his time in the pool.

Wednesday, November 09, 2011

Happy 2 month Haddie

My beautiful Haddie girl is 2 months old today. To celebrate her I finally got her to smile for the camera. It took a while because she kept looking at it strange. Finally, with Jay's help, we got it! I love you Haddie!

You can watch it here!

Happy 2 month birthday haddie girl!

Saturday, October 29, 2011


That's right SNOW in October! Lots of snow!

Truett, Jay and I went out this morning when it was just starting to fall then the boys went out with Daddy in the afternoon and made some snowmen. I did get pictures, they just aren't on the computer yet.

Looking forward to a good night's sleep then getting up to go to Greater Philadelphia Baptist Church. We are helping Pastor and Mrs Manney with the church plant in Clifton Heights. We have been there for a few weeks and are excited to see God working already!

Tuesday, October 11, 2011

What a day!!

What a day this has been! I couldn't let it go without documenting it in my blog!

We started today off with heading to DuPont for an ortho appointment. Dillon has been having stronger, longer seizures and crying out in pain. I have noticed he is holding his legs in weird positions sometimes too. So, naturally, I am thinking he is having pain from the hardware still in his legs from surgery 13 months ago. On the way down Dillon's pulse ox went as low as 79%. Thinking there was no way this was accurate the nurse turned off the machine and turned it back on. Suddenly he was at 100%. Weird! Ok... so the pulse ox isn't working quite right, continuing to DuPont!

Once there the doctor looked at him but didn't see any sign of pain (of course!) even though he was in a lot of pain for PT yesterday and cried out several times. So we went over for an X-ray.

His nurse took him back for the x-ray and after several minutes a nurse came out to get me and said to go on back. I was a little confused becuase I thought we were going to ortho when the x-ray was done. She then stated that Dillon was having seizures and that his nurse asked for me. I picked up the pace getting all 3 kid back with me.

On the walk back she then informed me they called a code on him. "WHAT? Why did you do that?" I asked. I get into the room and start saying "We know the pulse ox isn't working right!" over and over again as I put him on my lap to see what was going on. His oxygen was in the high 80's which is a little low but not CODE BLUE low! So I started to figure out what happened. Apparently he was at 95 so the nurse took him off for the X-ray but then saw his tongue was dark. (She had never seen this before, I have seen this even when his oxygen is high 90's) so that concerned her and she put the pulse ox back on and it read 77. Even though she knew it had been acting up there was the chance it was right, so she sat him up and he started coughing up lots of secretions. She was asking the x-ray tech to give her the suction machine, etc. They asked her if she needed help. Thinking they meant more oxygen and/or getting me she said "Uhhh sure" Next thing you know the loud speaker is say


A moment later there are 20 people trying to cram into this tiny little x-ray room! The main doctor came in sat down beside me (I was still holding Dillon) and start talking to me. He was asking what was going on, what his baseline is, he even introduced himself to Dillon! He sat beside me the whole time, calm and relaxed. They listen to me as I explained what the issue was with the pulse ox. Nurses were listening to him and checking his capularily refills but no one was going crazy. Finally the doctor started yelling out the hallway to everyone else to calm down, it is ok, we aren't going to be doing CPR, everything's ok, etc. I asked them to compare my pulse ox to theirs and sure enough mine was reading 3-5% lower the entire time - which makes a huge difference. So even if Dillon did drop (which I think he did until he coughed up a plug) he probably was not as low as it seemed.

The doctor then started to explain that normally the patient is sent to the ER and I said "Oh, please, don't" and he quickly finished with that he looks fine, I seem comfortable with him, so he would let me make that call. He said "Well I have never released a patient from a code blue to the waiting room, but go ahead." :o) He also asked me if I have medical training, I said No I'm a Mom. I told him I could be a nurse if only colleges give credit for life experience! He said they should hire me on the ICU. :o) One of the other doctor said I looked familiar, she used to work at CHOP in the ICU/Pulm floor so she probably met us there.

After some laughs and being thankful everything was good, we went back to ortho. The ortho doc said his hips look ok so it may be intermittent pain, but to just press on. If he cries out in the stander, keep him in, if he cries out during range of motion, give him some time then continue. I'm sure this is because the doctor knows these kids will learn they have a way to get out of what they don't like and will do it every time from then on. Dillon would totally be able to provoke seizures if it meant he got out of standing, or learn that yelling gets him out. So we have to keep going to help him get the necessary benefits from the stander.

WHAT A DAY! They LITERALLY called a CODE BLUE! wow! I'm just thankful he is ok. We got a new pulse ox machine already today and are planning to buy a finger spot check pulse ox so we will have something to compare to if this ever happens again. All in all it was a "good experience" the doctors listened to me, they stayed calm, they didn't over react. It went as good as it could have possibly gone, but I am glad to be home editing pictures on picnik instead of sitting in an ICU room tonight!

Saturday, October 01, 2011

3 weeks already?

I can't believe my little girl is already 3 weeks old. I have taken quite a few pictures, had lots of kisses and even more snuggles with her in these last 3 weeks.

Haddie is alert for much longer periods of time now. When she is awake I try to give her something to look at like Dillon's light box, high contrast pictures, or color pictures with a black background. She seems to enjoy it!

Today I put her on her belly and she rolled to her back! I'm quite sure it was by accident, but that's ok it is still good practice.

All but the last two nights, Haddie has been sleeping about 5-6 hours at night. The last two nights she has only gone 3 hours, maybe she is getting ready for her one month growth spurt...? She is still so tiny and petite! Although I must admit Haddie seems to be getting a little double chin and a nice round belly! Her face shape and the double chin remind me the most of Jay! I think they will look the most alike.

Today was a busy day. Josiah had to get up around 4am to do some work on the computer then went to a men's book study at church while I got all for little people up and going. Then he did some yard work. To give him time to do some school, I had him teach me how to use the riding mower. Well, I mowed the yard, and he didn't get any work done because, imagine that, 4 kids take up your full attention! LOL Then we went to Clifton Heights to hand out fliers for the new church. I don't know how many we got out but we were out for about an hour. Jay pushed Truett in the stroller and ran up to many of the doors to give them a flier. I had Hadassah in my sling and Daddy pushed Dillon. Then the men prayed for the ministry at the church and we came home. The boys are in bed early since we have to leave tomorrow morning about 7am to get to church in time. Haddie is acting like she hasn't had food in hours (its been about 30 minutes!) and Josiah is working on school. I guess that leaves me with needing to get off the computer and go do some house work and prepare everything I can to make getting ready in the morning as easy as possible....

Friday, September 16, 2011

Haddie's first week!

Waiting for Baby to make his/her arrival
Right after Hadassah was born!

Daddy and his little girl!

Jay's first time holding his little sister
Truett trying to explore his little sister
Grandpa S holding Haddie for the first time
Grandma S holding her
Daddy, Mommy, and our little girl!
Our first family picture with our whole family!
Grandpa and Grandma K's meeting their first granddaughter!
Dillon and his little sister
Jay holding HIS baby
Getting dressed in her take home outfit

They MADE me leave in a wheelchair because our car seat was not a carrier.
The car seat Daddy got for Haddie
Helping Truett with Haddie

Welcome Home Haddie!
The hand prints are of each of the family members here for her birth and when we brought her home. Dillon, JayDonn, Truett, Grandpa and Grandma S, Grandpa and Grandma K, Uncle Ezra and Aunt Gina, Uncle Dan and Miss Evelyn, Aunty Hannah, and of course later Daddy and Mommy added ours.

Aunt Gina sharing Haddie with Jay.
Snuggle time
Haddie's rose! At our church they have the fathers come up and get a rose and tell the church the names and ages of the other children then all the stats on the new baby. We got a blue ribbon with Truett and this time got a rose with a PINK ribbon!

Everyone on the Kuenzi side (don't know why blogger turned it)
Schnarr side
Aunt Hannah made Haddie her first skirt!
Truett holding Haddie in the little bed we made her for downstairs
Kissing her....AGAIN!

Jay helping with her sponge bath
Truett helped too - he made sure the floor was good and soaked.

alcohol for her cord (my doctor said he is old school and still likes to use it - it isn't going to hurt anything so why not)
Can you guess who bought her this shirt? "Grandma loves me"
Daddy and Mommy went out for dinner before Grandpa and Granda leave, so of course she is the only one who got to come with us.
Haddie's hand in Dillons
Haddie's hand in mine
Jay and his beloved little sister

Seriously, can one have too many pictures?????
I love this one! Dillon loves having her lay with him

Haddie with one of Dillon's nurses
Grandpa and Grandma bought Jay a skate board, he did very well with it.

Haddie has had a fun first week. She slept 5 hours in a row the first few nights then was sleeping 3 hours during the night. She has gone shopping, to Dillon's acupuncture, the doctor (at her first visit she was 6lb 2oz), out to eat and lots of other things.

We are enjoying our precious little gift from God.