Cherishing the moments!
Saturday, May 29, 2010
Friday, May 28, 2010
Pony Farm
Dillon's educator had a "field trip" today to a pony farm that is specifically meant for children with special needs. It is always free and they are very nice people. The pony's are so great with the kids! They have been desensitized to wheelchairs and everything like that so they just stand there and wait for the kids to rub them. They are so gentle. It was a great experience. I really liked it since Dillon could participate... at a zoo or normal petting farm Dillon can't do much. But here - they stood beside Dillon the whole time with one pony or another and let the pony nuzzle Dillon. Jay had a great time too, they even let him ride one for a few moments. It is pretty far from our home (45 miles) but I do want to go again! If anyone wants to know more info on it, let me know and I can email you their phone number and all.
Dillon seemed to enjoy it, at first his eyes were opened very wide then he closed them, but he stayed calm the whole time. He didn't have any seizures or cough at all (even though Jessica was feeding him during it too!) I think he enjoyed it!
Truett's Dr Appt
Truett was at the doctor yesterday for a weight check. Last Thursday he was 6lb 15oz and 19 inches long. This Thursday he was 7lb 9oz and 20 inches long! Wow is he growing fast! My little chunky monkey!
The doctor put a little silver nitrate in his belly button because it has a little bit of blood still, so hopefully that will clear it up.
He is doing good at night now too. he usually sleeps for 4 hours, eats, then sleeps for 3 hours. Not too bad for 12 days old I guess.
The doctor put a little silver nitrate in his belly button because it has a little bit of blood still, so hopefully that will clear it up.
He is doing good at night now too. he usually sleeps for 4 hours, eats, then sleeps for 3 hours. Not too bad for 12 days old I guess.
Monday, May 24, 2010
Happy One Week Truett!
Dear Truett,
Happy one week birthday! Yesterday you were one week old so I wanted to write you about your first week of life. Your brothers ADORE you. That's right, even Dillon loves you. When we put you on his lap he opens his eyes very wide and looks around. I had you laying with Dillon on his lap for over an hour one time and you were both so calm and relaxed. 
Jay thinks you are the best thing ever! He is constantly kissing you and telling me that he loves you. He kisses you so much that sometimes you cry. In the van Jay sits right beside you and rubs you. The first thing he says in the morning, starting your first morning home, is "Where's MY baby? Can you go get my baby?" He has to know where you are at every moment. One time Jay said he didn't want to go to the store because he had to stay with you. We have assured him that you are not going any where. While in the hospital, Jay saw your bracelets and asked me if you had the bracelet on in my belly. It was so cute. Other things Jay keeps saying is "The baby came out already?" and "We called him Baby in your belly? But now we call him Truett?"
Jay thinks you are the best thing ever! He is constantly kissing you and telling me that he loves you. He kisses you so much that sometimes you cry. In the van Jay sits right beside you and rubs you. The first thing he says in the morning, starting your first morning home, is "Where's MY baby? Can you go get my baby?" He has to know where you are at every moment. One time Jay said he didn't want to go to the store because he had to stay with you. We have assured him that you are not going any where. While in the hospital, Jay saw your bracelets and asked me if you had the bracelet on in my belly. It was so cute. Other things Jay keeps saying is "The baby came out already?" and "We called him Baby in your belly? But now we call him Truett?"Ok, about the week... I already wrote about your birth, so I won't write about that again. Sunday before church Grandpa and Grandma brought Dillon and JayDonn up to the hospital to see you. 
Jay loved you so much right away. 
We got a video of the first time they both saw you (its on my other camera I will have to add it later...sorry). Then Grandpa, Grandma, Dillon and Jay went to church and you and I snuggled at the hospital. After church everyone came back and spent the whole afternoon with you. Grandpa, Grandma, and Daddy were all falling asleep in the room...I wanted to take pictures of everyone else after Mommy gave birth because they seemed more tired than me! Everyone went back to church Sunday night and Daddy came back to the hospital to sleep with us. I let the nurses take you to the nursery around 11:30pm and they brought you back one time in the night to eat then took you again until 6am. Daddy and Mommy needed the rest! But for some reason I kept dreaming that you were in bed with me and I was afraid you would fall so I kept waking up.
Jay loved you so much right away. We got a video of the first time they both saw you (its on my other camera I will have to add it later...sorry). Then Grandpa, Grandma, Dillon and Jay went to church and you and I snuggled at the hospital. After church everyone came back and spent the whole afternoon with you. Grandpa, Grandma, and Daddy were all falling asleep in the room...I wanted to take pictures of everyone else after Mommy gave birth because they seemed more tired than me! Everyone went back to church Sunday night and Daddy came back to the hospital to sleep with us. I let the nurses take you to the nursery around 11:30pm and they brought you back one time in the night to eat then took you again until 6am. Daddy and Mommy needed the rest! But for some reason I kept dreaming that you were in bed with me and I was afraid you would fall so I kept waking up. Then Monday morning the doctor looked at you and told me she would release you if it was alright with the OB to let me go home. Everyone was good with that idea, especially me! So they took you to circumcise you at 11:00am. My heart breaks knowing it would be painful so I packed the room while you were gone to give me something to do. Miss Lori came to the hospital and took some beautiful pictures of you. Then Grandpa and Grandma came for a little bit before they had to leave to go home to West Virginia. Around 4:30 we walked you out of the hospital and drove home. 
It was a wonderful feeling to leave so soon with you. You were so quiet on the way home, Daddy had me check on you several times to make sure you were ok. On the way home, we stopped at the Chiropractor and Dr. Berman adjusted Daddy and Mommy. Then we took you home. Jay ran up to me and gave me a big hug then, literally, pushed past me to go see you! We took some pictures with the "Welcome Home Truett Mark" sign that Jay made for you. 
Miss Robin got to meet you then and so did Miss Victoria, who brought us a meal for that first night home. Of course, everyone thinks you are adorable! After Miss Robin left, Daddy went out to work on the car. Dillon started beeping, Jay was telling me "NO!" and you were nursing. I went to the door and asked Daddy to come help me!!!! I felt very over whelmed at that moment, but it has been better since.
It was a wonderful feeling to leave so soon with you. You were so quiet on the way home, Daddy had me check on you several times to make sure you were ok. On the way home, we stopped at the Chiropractor and Dr. Berman adjusted Daddy and Mommy. Then we took you home. Jay ran up to me and gave me a big hug then, literally, pushed past me to go see you! We took some pictures with the "Welcome Home Truett Mark" sign that Jay made for you. Miss Robin got to meet you then and so did Miss Victoria, who brought us a meal for that first night home. Of course, everyone thinks you are adorable! After Miss Robin left, Daddy went out to work on the car. Dillon started beeping, Jay was telling me "NO!" and you were nursing. I went to the door and asked Daddy to come help me!!!! I felt very over whelmed at that moment, but it has been better since. Tuesday started with Dillon's vision teacher being here. Jay walked down and looked at us all and said "Where's my baby?" He didn't even say Hi to anyone. Tuesday was a pretty calm day at home, but of course Jay was right there by you the whole day! Daddy and Mommy were talking about how big your feet are so I got Dillon's baby book out to compare. I have a foot print from when Dillon was around 3 months old and your foot is the exact same size! I wonder if that means you are going to be big and tall...it is that way for puppies - does that hold true for humans too?
Wednesday was Dillon's IEP meeting so we had 5 ladies here. You were eating when they came so when you were done and they could see you they had to "stop the meeting!" so they could all admire the tiny baby. Wednesday night we took you to church for the first time. I carried you in the sling so you were all snuggled. One lady saw me ans started to say "You are due soon, right?" and I turned and pointed to you! You slept during the whole church service and of course I loved holding you!
Thursday we left Jay at home with Daddy and took you and Dillon to the doctor's. First we started with Dillon's acupuncture and then we went to Dr. Gelman's. You were born at 7lb 2oz and the first night were down to 6lb 14oz and I was told that you would continue to lose weight but they would like to see you getting close to the 6lb 14oz again by this appointment. You were actually 6lb 15.4oz! Dr. Gelman walked in saying "that's not supposed to happen!" He was pleasantly surprised with you! You also got your first immunization, Hep B. I don't like getting immunizations, but Daddy wants us to so we do. I didn't get it done in the hospital so we had to get it done now. The doctor is ok with me spreading them out and only doing one at a time since we go every month for Dillon anyways. You cried for about 5 seconds and stopped before I could even pick you up off the table. Jay helped me with your first bath. 
We layed you on the floor and did a sponge bath, the only problem was he wanted to do it all and didn't think he needed my help. We got a video of that too.
We layed you on the floor and did a sponge bath, the only problem was he wanted to do it all and didn't think he needed my help. We got a video of that too.Friday I rearranged the living room so that you and Dillon could lay beside each other. I put up the black and white boards with bright lights for you both to look at. It seems like you like them, when you are awake you look at them a lot. Usually when you are looking at them you have one hand on the top of your head playing with your hair. A few times you have grabbed your hair and pulled so hard it made you cry! A lady from church brought us a meal Friday that was delicious. She made enough that it was Saturday's dinner and Sunday's lunch. The ladies at church are very sweet.
Saturday we loaded the van up and went for our weekly chiropractor visit. Jay wanted Dr. Berman to adjust you, but I told him that you have to wait till you are a little bigger. Then we were going to head to a park for a picnic lunch. While we were waiting for Daddy to finish the lights on the van I fed you and then changed your diaper. Of course you shot poop out all over your clothes, my shirt and skirt and my hands. I had to go change and Daddy changed your clothes. Then we went to the park, but of course you didn't like the bright sun. After the park we went to Good Will (Jay's sandals broke at the park and the sole fell off). But we didn't find anything in his size. We walked down to Wal-Mart, but I didn't find any sandals there either. We got your diapers and went back to the van. While I fed you (you think you have to eat the moment you are hungry!) Daddy worked on the lights, again. This time he dropped a bolt in the engine and couldn't reach it. We spent an hour trying to get this bolt. After buying a magnet at the dollar store and it not working I used Dillon's pulse ox tape and Daddy was able to get it out. Then we were able to come home.
Sunday we got up at 6:30 to get ready for church... it was going to be a big day for you. You and Daddy were getting a rose at church! New Daddy's get to bring the baby up front and tell the church the names and ages of siblings and all the info on the new baby. Pastor Wendal then presents the Daddy with a rose that has a blue (or pink - for the girls) bow tied to the vase.
It was funny because Daddy said all the info on you and didn't know that Pastor normally asks one question at a time. So the only thing Daddy forgot was to tell who you look like. You do look like Daddy, so that is what he said. You were adorable, dressed in a little tiny suit with a tie and a silver vest that Grandma S found for me at a store. Both your brothers had their own little suit so it was only right that you wear yours for your rose!
It was funny because Daddy said all the info on you and didn't know that Pastor normally asks one question at a time. So the only thing Daddy forgot was to tell who you look like. You do look like Daddy, so that is what he said. You were adorable, dressed in a little tiny suit with a tie and a silver vest that Grandma S found for me at a store. Both your brothers had their own little suit so it was only right that you wear yours for your rose! You had a pretty eventful first week of life, I would say. All the places you went and things you did! No wonder today, at only eight days old, you stayed awake for 3+ hours this afternoon.... you are afraid if you sleep you might miss something!
I love you so much already, Truett. I can't wait to get to see your personality as you get older. You seem like such a little peanut, it is hard to believe that as tiny as you are - you are a little person! I know you are going to get big so fast, so I am trying to cherish the moments. I think I am taking more pictures with you then your brothers because I now know how fast the times flies and I want to have as memories as possible. It has been a great first week with you... I love you Truett!
P.S. You lost your umbilical cord today! You get your first REAL bath tomorrow!
Tuesday, May 18, 2010
It's a BOY!
Truett Mark Kuenzi entered the world at 3:59 am Sunday May 16. He weighed 7 pounds 2 ounces and was 19 inches long.
Friday night my mother in law said she was thinking of coming Saturday through Monday to help and see the boys before they fly to California for my brother in laws UC Berkley graduation. The idea of having some extra help sounded great to me! Saturday morning around 9:45 Mom emailed me that she was leaving. Then around 11:30 she called to tell she had just left – Dad decided to come after all when Mom was in the driveway! So Josiah and I took the boys to a park for a picnic lunch and a good long walk while we waited for them to arrive. Dad and Mom got here around 5pm. We had dinner and played with the boys. Around 10:45pm Josiah and I started getting ready for bed. About 11:30 I commented to Josiah that the baby wasn’t playing like normal (11pm-1am has been “play-time for a while now).
I woke up at 2:35am with a bad pain in my stomach and went to the bathroom. I thought my water was leaking, but wasn’t 100% sure. I went back to my room and had another pain so I decided to time the next one. It was 3 minutes later so I woke Josiah up and we got things together to leave. We left around 2:55am...the hospital normally takes 45 minutes to get to but at night it took a little less than that. I have kept the camera in Dillon’s suction machine so I would know exactly where it was, and I still forgot it!!!
We got to the hospital and the security people must have walked away from their post or something because they weren't answering the buzzer to let me in so Josiah had to run all around the building to the ER and get them to let me in. Meanwhile I am kneeling on the cement in so much pain I couldn’t stand and banging on the doors hoping someone would hear me!
We were let in and went upstairs and they took me to a room and said I was 8 cm. Neither Josiah nor I said anything at the time, but we were both thinking “oh no, it could be a while yet!” About 10 minutes later they said to tell them when I need to push. The next contraction I told them I think I could push and they checked me and said I was 10cm and ready to go. They brought the doctor in and set up all the supplies and I pushed through 3 contractions and he was born at 3:59am! (So about 20 minutes after getting to the hospital!) The nurse told me for the next one I need to check into the Holiday Inn down the road for the last few weeks of my pregnancy! Heehee :o)
Truett didn’t cry loud like Jay did at birth, but he was making noises and moving and all. Truett’s apgar scores were 8 and 9. The doctor let the cord pulsate, like I asked her to do, so he got the stem cells that are in the cord. Then she held him up so I could see for myself if it was a boy or girl. The doctor had told Josiah 80% GIRL – so he was a surprise! I had told Josiah that I thought the doctor told him girl, but that it is a boy for most of the time. It wasn’t until the end when I was having the false contractions that I started to think it might be a girl (since I didn’t have those with the boys). Then Josiah cut the cord and I got to hold my little man.
It was wonderful! I am amazed at how I can doubt God sometimes. I was so worried about having someone here for the boys, and God had it planned the whole time to have my in laws come in less than 12 hours before he was born! I was worried about getting stuck in traffic, but God had it planned the whole time for us to go in the night when there was no traffic. I was worried about not getting to the hospital; God had it planned the whole time that I would get there in just enough time. I was worried about the pain and not being able to handle it, but God had it planned the whole time to be fast and smooth so I could. Everything was just perfect!
I am so happy to have another healthy little man to raise for the Lord!
I will post more tomorrow about the first time Dillon and Jay saw their little brother…
Sunday, May 09, 2010
Mother's Day
Happy Mother's Day!
This is the fifth year I have celebrated being a Mommy! (including the year that I was pregnant with Dillon.) We went to church this morning, of course, and then Josiah took us out to lunch to the Olive Garden. It was very good! Tonight in church Josiah sang the song "Leave a Legacy" by Kim Collingsworth. I did pull the camera out and video tapped him. It isn't the best shot from where I was sitting but I thought HIS Mom would like to see it. Click here to see Josiah singing.
Baby was very very active during church tonight. As much as I want to meet this new little baby, it is so much fun to feel it wiggle and kick and hiccup! I know I will get to meet him/her soon so I must remember to enjoy this wonderful feeling. As the song was sung in church this morning "Cherish the Moments". I need to even cherish the moments of a wiggly baby in my belly because soon it will be over...and from my other two I know I miss that as soon as it is done!
Have a good Mother's Day to all the Moms who read this!
This is the fifth year I have celebrated being a Mommy! (including the year that I was pregnant with Dillon.) We went to church this morning, of course, and then Josiah took us out to lunch to the Olive Garden. It was very good! Tonight in church Josiah sang the song "Leave a Legacy" by Kim Collingsworth. I did pull the camera out and video tapped him. It isn't the best shot from where I was sitting but I thought HIS Mom would like to see it. Click here to see Josiah singing.
Baby was very very active during church tonight. As much as I want to meet this new little baby, it is so much fun to feel it wiggle and kick and hiccup! I know I will get to meet him/her soon so I must remember to enjoy this wonderful feeling. As the song was sung in church this morning "Cherish the Moments". I need to even cherish the moments of a wiggly baby in my belly because soon it will be over...and from my other two I know I miss that as soon as it is done!
Have a good Mother's Day to all the Moms who read this!
Thursday, May 06, 2010
37 weeks Baby Kuenzi #3
I am 37 weeks today! I was at the doctor on Tuesday and am already progressing towards labor so hopefully it won't be long now! I can't wait - I am ready for the baby to come! I want to meet my new little one!
Our "new" van!
Our "new" van! It is a 1997 Dodge Caravan with 37K miles on it and is wheelchair accessible. Josiah got an awesome deal on it. He flew to NH on Monday - and got the last ticket on the plane - and drove home. The dealer he got it from was very nice, they fixed some things on the spot that would have cost us a lot to get fixed here and took off a little because there was a couple spots of rust.
There is a little button at the back where Josiah is standing that you hold down to open the door and lower the ramp, then pull it up to lift the ramp and close the door.
Then you just push Dillon up and turn him around to face the front.
He is then secured with four straps that attach to the floor. He already has a "car seat belt" on his wheel chair. This way we don't have to load and unload all his equipment every time we get in and out. We don't have to carry him and lift him into a car seat and back into the wheelchair every time!
I LOVE our van! I am actually looking forward to going out with Dillon now! It makes life so much easier. I don't dread leaving the house because I know we only have to load and unload one time. It is so much quicker. I can't say enough about how much easier it is!!! Thank you Lord for your timing and providing it for us. It took hours of Josiah looking at Craig's list across the whole country, ebay, dealerships, etc to find a van. They are CRAZY expensive - but God provided one for a great price. He got the last seat on the plane, the price was lowered, the fact that he is off work and could go get it right away so we have it for when baby comes, etc. Perfect...all the details were planned perfectly. Praise the Lord!
There is a little button at the back where Josiah is standing that you hold down to open the door and lower the ramp, then pull it up to lift the ramp and close the door.
Then you just push Dillon up and turn him around to face the front.
He is then secured with four straps that attach to the floor. He already has a "car seat belt" on his wheel chair. This way we don't have to load and unload all his equipment every time we get in and out. We don't have to carry him and lift him into a car seat and back into the wheelchair every time!
I LOVE our van! I am actually looking forward to going out with Dillon now! It makes life so much easier. I don't dread leaving the house because I know we only have to load and unload one time. It is so much quicker. I can't say enough about how much easier it is!!! Thank you Lord for your timing and providing it for us. It took hours of Josiah looking at Craig's list across the whole country, ebay, dealerships, etc to find a van. They are CRAZY expensive - but God provided one for a great price. He got the last seat on the plane, the price was lowered, the fact that he is off work and could go get it right away so we have it for when baby comes, etc. Perfect...all the details were planned perfectly. Praise the Lord!Saturday, May 01, 2010
LOTS of updates!
Wow, this last week has been pretty full. Let's see, where to start? How about with last Friday (April 23). Josiah came home from work and we were sitting on the sofa chit-chatting. All of a sudden, while smiling, he said "Guess how my day ended." I said something like "I don't know..." and he said something that made me ask "Did you get fired?!?" He quickly assured me no, that he got laid off. They told him at 5pm that he was laid off immediately. He was the 3rd person in the company laid off, but he was in the middle of a project so he did not see this coming. Since then, two more men have been laid off. The lay offs were due to lack of work. They didn't want to lay him off, but had to. Josiah's trust in God is amazing, though. He was smiling and said he is excited to see where God is going to take him next and what opportunities he was going to give him next. He has been applying to tons of jobs since then. I am kind of hoping a new job won't start until after the baby is born so he will be here to take me to the hospital! But will you please pray that he will be able to get a job, the job God wants for him, soon? Thank you!
Another thing that has been happening is our van, which has 92K miles, is having trouble with the transmission. We took it into the Honda dealer and they told us it was not the trans, but then in the days following it got worse. It clunks into gear when you go in reverse, it wouldn't go above 20MPH one time, another time it wouldn't go above 20MPH and started to shake when it was at 3000RPM. Then one time at 35MPH the whole van "locked up" and jerked me forward in the van, another time it did this at 55MPH while on cruise control! It is getting very dangerous! So we took it back to the dealer and they said it is the trans and that it needs to be replaced for a small fee of only $4,800!! Our van was under a recall for the exact problem we are having, but apparently they did the "preventative fix" so the Honda dealer will not do anything to help us with the fee, not even with the price of the parts. We decided to take it somewhere else, they are checking it on Monday but they said it should be $1,600-$3,500 depending on what is actually wrong with it. Please pray the price will be something closer to the $1,600!! We have to fix the van - our baby is coming in a few days and we need transportation that will fit all three of our children in their car seats plus Dillon's equipment and wheelchair!!! Josiah's corolla is just too small. We have squeezed the three car seats in the back, but it is TIGHT and the wheelchair has to be broken down every time to go into the trunk and it is very hard to reach Dillon to take care of him while driving. Thank you for praying for this matter as well!
Some more possibly not so good news - we took Dillon back to the doctor for his pneumonia check up and the doctor has two guesses as to why Dillon is so tight. His first guess, and the best option, is that Dillon has a virus that is causing arthritic pain in his joints that is making him tighten. If it is the virus it should go away within the next week. Dillon and Jay both have had pink cheeks, which he believes could be a sign of a virus. However, the second option is that it is a neurological change - which would not be good. This would mean that this will be a life long problem we will have to start figuring out how to deal with it. I believe it is a virus because he is doing a little better. He is actually laying on the floor again. He is still tight but not as often as he was before. Please pray that it would be a virus, and he would return to normal quickly, and not neurological issues.
Enough of the not so good news! There is a bright side to this week. Even during trials, God reminds us that He is still in control and cares for us and will supply our needs. Dillon does have a small special needs trust to help us get a home that is accessible to him. Our current home is a 3 story row home that is over 100 years old, has small hallways, a lots of steps, a small bathroom that is impossible to use for Dillon, and a bathroom and kitchen that are not insulated and are freezing cold in the winter! There are also neighbors that smoke more than cigarettes, and it comes through the walls sometimes and is often so bad outside that we cannot have doors or windows open.
So a friend, who is a Realtor, has spent hours and hours helping us search for a home that would be able to be accessible to Dillon in the price range we have to work with. It has NOT been easy! Do you know how expensive homes are now-a-days?!? There are very few homes that would work without needing major renovations. But at last - we have found one! Dillon's trust was able to put an offer in on a home and the offer was accepted! The owners are willing to wait the several weeks (6-12 probably) necessary for the court system to do what it needs to do in order to take possession of the home. It is about 25 minutes closer to Philly than we live now. It is a great location! We will be about 15 minutes from church, about 20 from Dillon's doctor, and about 30 minutes from CHOP. It is also very close to King of Prussia, which is the other main place besides Philly for Josiah to work. I will post pictures later, but Praise the Lord is all I can say! I am so thankful He has helped us be able to live in a home that will make taking care of Dillon so much easier! The only thing the home needs to be accessible is a wheelchair incline stair lift installed. (platform that carries a wheelchair up and down the stairs and folds up against the wall when not in use) Again, I will post pictures but I will do that a little later, I have to save them to my computer and then upload them...
Another thing that has been happening is our van, which has 92K miles, is having trouble with the transmission. We took it into the Honda dealer and they told us it was not the trans, but then in the days following it got worse. It clunks into gear when you go in reverse, it wouldn't go above 20MPH one time, another time it wouldn't go above 20MPH and started to shake when it was at 3000RPM. Then one time at 35MPH the whole van "locked up" and jerked me forward in the van, another time it did this at 55MPH while on cruise control! It is getting very dangerous! So we took it back to the dealer and they said it is the trans and that it needs to be replaced for a small fee of only $4,800!! Our van was under a recall for the exact problem we are having, but apparently they did the "preventative fix" so the Honda dealer will not do anything to help us with the fee, not even with the price of the parts. We decided to take it somewhere else, they are checking it on Monday but they said it should be $1,600-$3,500 depending on what is actually wrong with it. Please pray the price will be something closer to the $1,600!! We have to fix the van - our baby is coming in a few days and we need transportation that will fit all three of our children in their car seats plus Dillon's equipment and wheelchair!!! Josiah's corolla is just too small. We have squeezed the three car seats in the back, but it is TIGHT and the wheelchair has to be broken down every time to go into the trunk and it is very hard to reach Dillon to take care of him while driving. Thank you for praying for this matter as well!
Some more possibly not so good news - we took Dillon back to the doctor for his pneumonia check up and the doctor has two guesses as to why Dillon is so tight. His first guess, and the best option, is that Dillon has a virus that is causing arthritic pain in his joints that is making him tighten. If it is the virus it should go away within the next week. Dillon and Jay both have had pink cheeks, which he believes could be a sign of a virus. However, the second option is that it is a neurological change - which would not be good. This would mean that this will be a life long problem we will have to start figuring out how to deal with it. I believe it is a virus because he is doing a little better. He is actually laying on the floor again. He is still tight but not as often as he was before. Please pray that it would be a virus, and he would return to normal quickly, and not neurological issues.
Enough of the not so good news! There is a bright side to this week. Even during trials, God reminds us that He is still in control and cares for us and will supply our needs. Dillon does have a small special needs trust to help us get a home that is accessible to him. Our current home is a 3 story row home that is over 100 years old, has small hallways, a lots of steps, a small bathroom that is impossible to use for Dillon, and a bathroom and kitchen that are not insulated and are freezing cold in the winter! There are also neighbors that smoke more than cigarettes, and it comes through the walls sometimes and is often so bad outside that we cannot have doors or windows open.
So a friend, who is a Realtor, has spent hours and hours helping us search for a home that would be able to be accessible to Dillon in the price range we have to work with. It has NOT been easy! Do you know how expensive homes are now-a-days?!? There are very few homes that would work without needing major renovations. But at last - we have found one! Dillon's trust was able to put an offer in on a home and the offer was accepted! The owners are willing to wait the several weeks (6-12 probably) necessary for the court system to do what it needs to do in order to take possession of the home. It is about 25 minutes closer to Philly than we live now. It is a great location! We will be about 15 minutes from church, about 20 from Dillon's doctor, and about 30 minutes from CHOP. It is also very close to King of Prussia, which is the other main place besides Philly for Josiah to work. I will post pictures later, but Praise the Lord is all I can say! I am so thankful He has helped us be able to live in a home that will make taking care of Dillon so much easier! The only thing the home needs to be accessible is a wheelchair incline stair lift installed. (platform that carries a wheelchair up and down the stairs and folds up against the wall when not in use) Again, I will post pictures but I will do that a little later, I have to save them to my computer and then upload them...
Monday, April 26, 2010
Baby Kuenzi #3 Guessing Game!!
Baby Kuenzi #3 Guessing Game!
If you want to play email me at tiffanykuenzi@gmail.com with your name and the date and gender! :o)
Wednesday, April 21, 2010
A sick lil boy
Last night, around 3am, I was tossing and turning in bed so I decided to get up and get a drink - even though I had a water bottle right next to my bed. Normally I don't get up, I just drink my water so I don't know why I decided to get up, but I did. I believe the Lord woke me up because the nurse stopped me in the hall and told me Dillon's fever was 104.3! She had given Tylenol an hour before when his fever was 102 but it went higher. I think it spiked higher because in an attempt to cool him down she had him in a diaper with cool cloths on his head and a fan blowing on him. I think it gave him a chill which would spike the fever even higher. So we removed the cloths and fan and waited a little bit. We also changed his CPAP mask to the one that does not have a "hat" to allow his head to cool down, but then his oxygen levels were struggling. So I had the nurse give an albuterol treatment and the vest and he calmed right down. He needed the vest to break up the junk in his lungs. I went back to sleep around 5am when his fever was down to 99.
The day was rough with Dillon, too. He only had a little bit of a fever around 1pm but he is still SO TIGHT! The only way to keep him calm is to hold him. If we don't hold him he gets so tight and his heart rate goes up. I sat on the sofa and held him till I could feel parts of my body any longer - but he did sleep some with the CPAP. Daddy ate dinner and then has been sitting on the sofa holding him all night with the CPAP on. The doctor did order a new nebulizer for him today too. Plus he has now had 3 doses of antibiotic. The doctor is warning me that even though his oxygen levels are good now, he isn't coughing the secretions up so when he does start to break them up he may not be able to maintain his oxygen levels.
We really need prayer that he will be able break up the secretions that are settled in his lungs and when that does happen that he will be able to handle his oxygen levels!! Thank you!
The day was rough with Dillon, too. He only had a little bit of a fever around 1pm but he is still SO TIGHT! The only way to keep him calm is to hold him. If we don't hold him he gets so tight and his heart rate goes up. I sat on the sofa and held him till I could feel parts of my body any longer - but he did sleep some with the CPAP. Daddy ate dinner and then has been sitting on the sofa holding him all night with the CPAP on. The doctor did order a new nebulizer for him today too. Plus he has now had 3 doses of antibiotic. The doctor is warning me that even though his oxygen levels are good now, he isn't coughing the secretions up so when he does start to break them up he may not be able to maintain his oxygen levels.
We really need prayer that he will be able break up the secretions that are settled in his lungs and when that does happen that he will be able to handle his oxygen levels!! Thank you!
Tuesday, April 20, 2010
1 day - 5 appointments
5 appointments equals one LONG day!
Vision therapy 8:30-9:20am : Dillon was using his right eye for the fist time in a LONG time today. She is thinking that because of the scratch on the left eye his brain shut that one off and was using the other one. Which means we probably want to start patching so we can start to force the right eye to get stronger and then try to get them to work together.
Acupuncture 9:50-10:20am : Dillon had a few more points put in today because he has been sick. He actaully relaxed his muscles during it which was good, but then shortly after he was back to being as stiff as a board.
Ophthalmology 11:00-12:pm : Once we finally found the building we were good to go! (We had their old address since they haven't updated the internet!) Dillon was so tight and stiff I had to hold him on my lap the whole time! The doctor said his left eye has healed, however the right eye has scar tissue due to being dry. I just found out last week from one of my night nurses that they no longer had the order in the book to be giving the eye gel at night to keep his eyes wet during the night. I have NO idea how long ago that stopped, and it should NOT have stopped. People are failing to do their jobs and I am not happy about it since he now has scar tissue on his cornea. Someone in the office messed up and didn't put it on the next month sheet and then the nurses messed up because they are supposed to be checking the sheets every month to make sure they are right. Since there was never a DC order (discontinue) it should not have been ignored!
Pediatrician 12:50-2:00pm : Dr Gelman listened to Dillon and thinks we are catching a pneumonia at the beginning and started him on an antibiotic. I think he has been struggling with a stomach thing and the pneumonia must just be getting started. So back to see him in another week.
Obstetrician 2:30 - 3:45 : The baby's heart beat was about 147. I had some sugar in my urine, but once I told her about our day and that I have had some coffee and Wendy's for lunch etc she wasn't too worried. She just told me to eat less carbs before my next appointment in two weeks. The baby is measuring fine and everything seems good. The baby is head down now and at this point they would not expect it to move out of that position. I have gained 33 pounds!!! Ahhhh!!! With Dillon I gain 19 with Jay I gained 25, what is with the 33 pounds and still over a month to go!?!?!?! I know I know it is normal, but still.....means more to lose afterwards! :o(
Then we went to CVS to get Dillon's medicine and finally home. I don't know what has been going on with him. He is not acting like he normally does with pneumonia, he isn't acting like he does for a stomach bug, he is doing some strange stuff with being stiff. And when I say stiff I mean so stiff you can NOT make him bend; and if you do your strength will run aout before he gives up! I don't like when he is changing his behavior, I like when I can figure out exactly what is wrong and fix it. Please just pray for him to get better with this antibiotic. Thanks!
The best part of today was JayDonn - he was so well behaved! I don't remember having to talk to him at all really. He was so good for me! And it was such a long day. He ate 2 5 piece chicken nuggest from Wendy's for lunch, plus some french fries... he was a hungry little man on top of it all. Praise the Lord because I was stressed out enough with Dillon, I am so thankful Jay was well behaved!
Vision therapy 8:30-9:20am : Dillon was using his right eye for the fist time in a LONG time today. She is thinking that because of the scratch on the left eye his brain shut that one off and was using the other one. Which means we probably want to start patching so we can start to force the right eye to get stronger and then try to get them to work together.
Acupuncture 9:50-10:20am : Dillon had a few more points put in today because he has been sick. He actaully relaxed his muscles during it which was good, but then shortly after he was back to being as stiff as a board.
Ophthalmology 11:00-12:pm : Once we finally found the building we were good to go! (We had their old address since they haven't updated the internet!) Dillon was so tight and stiff I had to hold him on my lap the whole time! The doctor said his left eye has healed, however the right eye has scar tissue due to being dry. I just found out last week from one of my night nurses that they no longer had the order in the book to be giving the eye gel at night to keep his eyes wet during the night. I have NO idea how long ago that stopped, and it should NOT have stopped. People are failing to do their jobs and I am not happy about it since he now has scar tissue on his cornea. Someone in the office messed up and didn't put it on the next month sheet and then the nurses messed up because they are supposed to be checking the sheets every month to make sure they are right. Since there was never a DC order (discontinue) it should not have been ignored!
Pediatrician 12:50-2:00pm : Dr Gelman listened to Dillon and thinks we are catching a pneumonia at the beginning and started him on an antibiotic. I think he has been struggling with a stomach thing and the pneumonia must just be getting started. So back to see him in another week.
Obstetrician 2:30 - 3:45 : The baby's heart beat was about 147. I had some sugar in my urine, but once I told her about our day and that I have had some coffee and Wendy's for lunch etc she wasn't too worried. She just told me to eat less carbs before my next appointment in two weeks. The baby is measuring fine and everything seems good. The baby is head down now and at this point they would not expect it to move out of that position. I have gained 33 pounds!!! Ahhhh!!! With Dillon I gain 19 with Jay I gained 25, what is with the 33 pounds and still over a month to go!?!?!?! I know I know it is normal, but still.....means more to lose afterwards! :o(
Then we went to CVS to get Dillon's medicine and finally home. I don't know what has been going on with him. He is not acting like he normally does with pneumonia, he isn't acting like he does for a stomach bug, he is doing some strange stuff with being stiff. And when I say stiff I mean so stiff you can NOT make him bend; and if you do your strength will run aout before he gives up! I don't like when he is changing his behavior, I like when I can figure out exactly what is wrong and fix it. Please just pray for him to get better with this antibiotic. Thanks!
The best part of today was JayDonn - he was so well behaved! I don't remember having to talk to him at all really. He was so good for me! And it was such a long day. He ate 2 5 piece chicken nuggest from Wendy's for lunch, plus some french fries... he was a hungry little man on top of it all. Praise the Lord because I was stressed out enough with Dillon, I am so thankful Jay was well behaved!
Sunday, April 18, 2010
Crazy Jay comments
Here is a dialog between JayDonn and I on the way home from church tonight:
Mommy: Are you going to kiss our baby?
Jay: Yes
Mommy: Is Dillon going to kiss our baby?
Jay: Yes, ummm no he is going to cough on the baby.
Mommy - after I stopped laughing: Should we help Dillon kiss the baby?
Jay: No, his mouth doesn't work.
Mommy: Should we help baby kiss Dillon?
Jay: Yes, on the cheek.
He is a crazy two year old!
It was so sweet this morning after Sunday school Jay told me right away about how Hannah cried and God gave her a baby boy. I asked what her baby's name is and he told me Samuel. He is learning - for all those who work with two year olds in church, they DO learn from you! I know it seems like they don't (I have taught in there before myself) but they really do absorb a lot!
Mommy: Are you going to kiss our baby?
Jay: Yes
Mommy: Is Dillon going to kiss our baby?
Jay: Yes, ummm no he is going to cough on the baby.
Mommy - after I stopped laughing: Should we help Dillon kiss the baby?
Jay: No, his mouth doesn't work.
Mommy: Should we help baby kiss Dillon?
Jay: Yes, on the cheek.
He is a crazy two year old!
It was so sweet this morning after Sunday school Jay told me right away about how Hannah cried and God gave her a baby boy. I asked what her baby's name is and he told me Samuel. He is learning - for all those who work with two year olds in church, they DO learn from you! I know it seems like they don't (I have taught in there before myself) but they really do absorb a lot!
Saturday, April 17, 2010
Happy BIRTH day Moriah!
Happy BIRTH day Moriah!!!
So there is no misunderstanding - I am still pregnant!!! Moriah is my new little niece that was born this morning! Congratulations to my sister and brother in law! I wish I could be there to hold her!
Here she is with Mommy and her big brother
Daddy showing her to her brother and sister
Monday, April 12, 2010
Scratched Cornea
This morning we went to acupuncture with Dillon as we try to do every Monday morning. When Nurse Robin carried him in Jay made a comment that Dillon was crying. Huh? Dillon doesn't cry... Well he did have tears coming out of his left eye. Soon it was red and puffy and he was having a lot of seizures. The eye kept tearing and he was making the meanest faces I think I have ever seen Dillon make.
About an hour later, when his eye was STILL red, puffy, and tearing, and he was still making mean faces at us, we called the doctor to see what we should do. He didn't have an appointment until 5:15pm but did want to see him tonight. Dr Gelman put a orange dye in Dillon's eye and then used a UV light to look at it. Sure enough there is a (in my opinion) HUGE scratch below the pupil. I got to see it and couldn't believe how big it was. The orange dye turned green and the scratch was a big green area. I estimate it was about 3/8 of an inch long by about 1/8 inch high on the one side and was triangle shaped.
Best we can tell the nurse's hair must have done it, the Doctor said anything could have done it, including hair. Where she carries Dillon on her shoulder there is nothing to scratch it except her hair....Note to self and others who care for Dillon - watch out that your hair, jewelry, zippers, coats, etc are not in the way of his face when you carry him!
Dr. Gelman put him on a 7 day antibiotic eye drop and said we have to see an optho in 7 days. Whenever there is a scratch on the eye like this they must follow up with optho. I didn't like my last optho so Dr. Gelman gave me some names to call tomorrow and try to schedule with.
Poor little man! Of all the crazy things Jay does in a day I am surprised Dillon gets these kinds of injuries and not Jay! (Not that I am complaining that Jay has been safe and healthy.... just surprised.) Speaking of Jay - a funny thing he told me the other day I wanted to share with everyone. He was playing with a toy truck, horse and horse trailer. They had an accident and the horse got hurt so I asked him if the horse needed to go to the veterinarian and he said yes. I asked him if he wanted to be a veterinarian and he said, "Yes. I don't like lions, Daniel can take care of the lions. I don't like lions, they bite me and eat me. Daniel can take care of the lions." hahahahaha I am always amazed at how a two year old's brain works!
About an hour later, when his eye was STILL red, puffy, and tearing, and he was still making mean faces at us, we called the doctor to see what we should do. He didn't have an appointment until 5:15pm but did want to see him tonight. Dr Gelman put a orange dye in Dillon's eye and then used a UV light to look at it. Sure enough there is a (in my opinion) HUGE scratch below the pupil. I got to see it and couldn't believe how big it was. The orange dye turned green and the scratch was a big green area. I estimate it was about 3/8 of an inch long by about 1/8 inch high on the one side and was triangle shaped.
Best we can tell the nurse's hair must have done it, the Doctor said anything could have done it, including hair. Where she carries Dillon on her shoulder there is nothing to scratch it except her hair....Note to self and others who care for Dillon - watch out that your hair, jewelry, zippers, coats, etc are not in the way of his face when you carry him!
Dr. Gelman put him on a 7 day antibiotic eye drop and said we have to see an optho in 7 days. Whenever there is a scratch on the eye like this they must follow up with optho. I didn't like my last optho so Dr. Gelman gave me some names to call tomorrow and try to schedule with.
Poor little man! Of all the crazy things Jay does in a day I am surprised Dillon gets these kinds of injuries and not Jay! (Not that I am complaining that Jay has been safe and healthy.... just surprised.) Speaking of Jay - a funny thing he told me the other day I wanted to share with everyone. He was playing with a toy truck, horse and horse trailer. They had an accident and the horse got hurt so I asked him if the horse needed to go to the veterinarian and he said yes. I asked him if he wanted to be a veterinarian and he said, "Yes. I don't like lions, Daniel can take care of the lions. I don't like lions, they bite me and eat me. Daniel can take care of the lions." hahahahaha I am always amazed at how a two year old's brain works!
Monday, April 05, 2010
Chuck E Cheese
Our first time at Chuck E Cheese.... Jay LOVED it! He caught on very fast about the tokens and how they worked. He had a blast! The yellow car (see below) was his favorite riding toy and he loved to climb in the oberhead tunnels and come down the slide. I have a feeling we will be hearing about this for a long time! :o)
Dillon got very upset about something and would not calm down until we got him home. I am not sure if it was too loud, too over stimulating in another way, or if he knew it was a fun place, etc. He was trying to stand the whole time and then the whole time in the car on the way home. I wish I knew what was going on in his mind!
Dillon got very upset about something and would not calm down until we got him home. I am not sure if it was too loud, too over stimulating in another way, or if he knew it was a fun place, etc. He was trying to stand the whole time and then the whole time in the car on the way home. I wish I knew what was going on in his mind!
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