Wednesday, April 27, 2011

Dillon's sleep study

Dillon had a sleep study last night. The night nurse met us down there and took over so I could come home and sleep. I got a call about 11PM saying the doctor wanted the nurse to take Dillon down to the ER and that they were aborting the sleep study! Huh? He was fine when I left him!

His heart rate went high (which was still within the range I told them were cleared by cardiology). And keep in mind it started going up while they were attaching wire after wire after wire (that left nasty red marks all over his face, neck and chest... hum I wonder why he didn't like it!?)

Then because his heart rate was up from being mad he got a fever! Oh no - 99. No hospital considers 99, one degree higher than the patients norm, a fever.

Oh and let's not forget the Tylenol didn't work. When I asked the doctor how long ago it was given her answer was 20-30 minutes. I informed the doctor Tylenol usually takes 45 minutes or so to kick in and she needed to wait.

She said he was coughing up green stuff. My nurse said he never saw anything green.

And and let's not forget the increased secretions - which he is in between robinul doses at the time and I warned them he would have more in between doses.

And my favorite reason why he needed to go to the ER was "He is gagging on secretions and coughing." I informed the doctor that Dillon cannot swallow which is why we have a suction machine and he HAS to cough those secretions up.

She was convinced the study should be stopped because he was so ill and needed to go to the ER. I spoke on the phone with my nurse and he said Dillon was already starting to calm down, he also had told them Dillon did not need to go to the ER and that he was fine to continue the study once he calmed down from all the wires being placed.

They finally called me back at midnight to tell me they would continue. Then he must have done great because they never even put him on CPAP... during the whole night! If he would have needed it they would have put him on a low number and worked it up to where he needed - so I think he may not need CPAP anymore.... I can't wait for the results!

I really don't understand these CHOP doctors who don't understand special kids. How do they work at CHOP and be afraid of special kids? I told the doctor she clearly had not read his history if she didn't know that he can't swallow (which is kind of important when you are doing a sleep study to see how well a child is breathing) and that he is so sensitive to temp that a warm room can make his temp go up to 104. I think next time I go to a sleep study I will try to schedule on a night Dr. Shaw is not there!

Spring pictures and videos

Jay was so afraid to ride his blue bike with brakes anywhere except the back patio. yesterday we tried riding in the driveway and we were not getting anywhere. So I took a chocolate chip cookie down tot he end, put it beside the light and told him he had to ride down to get it. Can you guess who rode down the driveway? And can you guess who isn't afraid anymore? I guess all it takes is enough, of the proper, motivation! He is now doing great on the bike! In the next week we will try the sidewalk! Oh no! :o)

Truett's and Mommy's hands

I know they are so close to the same picture, but I love them all! :o) Couldn't decide which ones were the best so I put them all in. That's a Mommy for you!

Click HERE to see Jay riding his bike in the drive way
Click HERE to see Truett crawling and standing in the grass.

Hope you are enjoying the spring weather as much as we have been this week!

Baby Kuenzi #4

Monday April 25th we went for our ultrasound. I decided I did not want to find out what the baby is. I like to be surprised, I think it is better for several reasons. One being they guessed wrong with Truett and I don't want to have them be wrong again. Another is I don't want people to be "sad" for me if we don't get a girl, if we have 4 boys we will be thrilled to raise 4 boys for the Lord. Of course I would like a girl, but I don't want to EVER be sad over my precious gift from God and I don't want anyone else to be either!

Josiah decided that if I was going to be surprised, so is he! Yes! It is so much for to be surprised together!

The baby looks good, everything looks healthy. I tried to eat very little sugar/carbs that day so the baby wouldn't be too active for them but instead it was napping! They had to keep poking my belly with the ultrasound probe to get him/her to move. The doctor came in and said everything looked great. He even turned on the #D and gave us a few 3D pictures! This is an answer to prayer for me - silly as it is! I had wanted to do this so bad but it normally cost a few hundred dollars and I just couldn't do it right now - so God allowed us to get to see it a little and get a few pictures - FOR FREE! Awesome! Isn't it neat how our God cares about the little things our heart desires!
We didn't get too good of 2D pictures because the baby was looking at us and we couldn't get the profile, but here is the 3D. I think he/she has my nose! :o)

Happy Resurrection Sunday

First an "old" picture. This was baby Kuenzi #4 at about 17 weeks.

I'm a few days late, but Happy Resurrection Sunday! We went to church in the morning and a quick lunch and little nap for the boys (Daddy and Mommy were mowing the grass) then back to church early to practice and do mic checks. Josiah sang in a men's group then the two of us were asked to give a short testimony about Dillon and how we are a "picture of Grace" because of him. I was nervous, of course, but I think it went well. Josiah spoke more about how it hit him when we got our first bill in the mail for 1.1 million and "Please pay in full." We saw we had to totally trust God for it. I spoke more about getting over my anger towards God and looked instead to see HOW it could be used for good as he promised. Praise the Lord!

Our family!

Click HERE to see Jay in his 3 year old march at church. They have the 3 year olds walk across the platform - just because they are too cute in their Easter clothes!

Fixing the sink

Daddy and his boys fixing the kitchen sink. They changed the leaking facet to a new, wonderful, non-leaking one. Of course they all had to help Daddy!

Friday, April 15, 2011

Grandpa Schnarr's Homegoing

My Grandpa has always been a big part of my life. At times, my family lived with my grandparents, other times we lived within 1 mile of them. All in all I think 13 of my 17 years at home were spent within a short distance to Grampa and Gramma.

Several years ago Grandpa started his fight with cancer. Recently, the battle was getting worse. As a family we went to visit them both in August and in November. I am so thankful for the time we had with them.

Sunday April 3 we got word that the hospice nurses thought Grandpa would pass within 24 hours. Every time my phone rang, I held my breath thinking it was THE call. The next few days were so hard. My Grandpa preached at my wedding, he was the one we would always go to with Bible questions, he knew everything! My first job was working with Grandpa and Dad with the painting and paperhanging business and then in rehabbing homes. I used to have to pick scraps of pasted coated wall paper from my hair because "somehow" it always seemed to fall on my head. I was the "gopher" for Grandpa for a long time until I was finally a painter/paperhanger as well. When I stopped to think of my memories with Grampa and Gramma I realized I have way to many to even write down. I have nothing but memories with them. They were always around and always a part of my life. They went to my choir events, church things, any awards ceremonies from school, they were there. If I tried to list them all the list would just go on and on. I can't say I remember any particular "gift" they gave me, because any of the tangible gifts they gave me were not as important to me as what they did give... they gave me their time, their prayers, their love, and a Godly heritage!

Grampa was saved (saw himself as a sinner and knew that only God could save him through Jesus' shed blood and resurrection from the dead) around 17 years old, went to Bible college and served God in full time ministry for over 40 years. He started a few churches, pastored a few others, was a missionary, etc. Grampa and Gramma spent their lives serving God and touching thousands of lives. Other men are still in the ministry today that Grampa mentored. One of Grampa's worse pain days ever his Pastor asked him what he was looking forward to about Heaven. His Pastor thought he would answer "No more pain." But not Grampa. His answer was that he is looking forward to not sinning ever again! He knew in his pain he had said hurtful things to people he loved and was tired of a sinful world, looking forward to never sinning again! There is no doubt, Grampa knew Heaven was his home based on the Bible promise that "Whosoever calleth on the name of the Lord shall be saved." Praise the Lord! Sunday night Gramma made sure we all got to skype with Grampa. Even though he couldn't talk she said he could hear and understand still.

Later that night, based on my understanding of his vitals, he slipped into a coma. He didn't wake up again. Late on the 5th and into the 6th my aunt, cousins, and other family were there with him and started singing hymns. They then played the song that became his favorite in the last few months, "I can only imagine". After the song my aunt told Grampa that everyone was alright, that if he was at peace with God stop imagining and make it reality. When he was ready go, make Heaven a reality. A few breaths later Grampa no longer had to imagine what Heaven is like. He was there!

We left on Thursday for the services. Friday morning was the viewing then the grave side. The memorial service was later that night. Praise the Lord one of our nurses was willing to go with us and help take care of Dillon so we could sleep at night. It was a huge blessing.

The services were hard for me, not because I don't know where he is, but because I will miss him. JayDonn kept reminding me that I will talk with him again and see him again - when I get to Heaven one day. Thank you Jay! I needed to be reminded of that! Josiah sang "Celebrate Me Home" at the memorial service. You can watch that by CLICKING HERE.

We will miss you Grampa, but we are celebrating you home! Not "good bye", but "we'll see you later!"