My little baby is now a big boy! At 14.5 months he finally has his two bottom teeth! The first one came through on Saturday (Aug 25) and the second one on Monday (Aug 27). My little is growing up too fast.
(For all you picture-lovers I tried to get a picture but it just wasn't working...sorry!)
Friday, August 31, 2007
Tuesday, August 28, 2007
Prayer update for Dillon - Posted by Josiah
Thank you for continuing to pray for us and Dillon. At 14.5 months, doctors are giving diagnosis of CP - Cerebral Palsy - Hypotonic Quadriplegia. Our trip to Children's Hospital of Philadelphia today was our first appt with the doctor who runs the CP clinic at CHOP. Down the road he will be managing Dillon's imminent tightness of muscle tone and working with therapists to customize equipment such as wheel chairs, braces and standers.
The most recent change at home is nursing care on the week nights and more equipment to monitor Dillon's vitals due to his increasing breathing difficulties. It seems that Dillon has been in a similar state for quite sometime. Many of the doctors don't really value a life like Dillon's, but now some of the doctors at CHOP have started to take things more seriously and thankfully are treating him more as a child of worth rather than a waste of care and time as suprisingly many have. We are now more aware of Dillon serious breathing problems because the the pulse ox equipment he is on that notifies us when he is in danger zone.
The good thing is we have the breathing equipment and oxygen to help him, but if he is on it too much or too long he will become dependent on these life support systems which obviously is not what we want. The medical personnel would rather keep him on it and see his levels good, but our goal is to keep it as low as possible and only give him help when needed. We are looking into ways to strengthen his breathing instead of getting him hooked on the machines. This requires much monitoring and adjusting levels whereas if you kept him on a higher setting it would not beep as much and would not be as much work for us or the nurses, but if he is kept on these support systems in the long run it would be detrimental to Dillon.
We can already see that he is becoming dependent on this equipment when we turn it low or take him off he gets dangerously low oxygen levels for long periods of time. If we cannot even take him off the equipment for a little bit of time, it becomes that much harder to move him and all the equipment.
They have in the past said if we can't get Dillon to breath a trach is a possibility and also the doctor just told me this last week that Dillon only has an 15% chance of living to be 25 and the number one reason is breathing problems. They offer little help in making Dillon stronger so he can improve and not need oxygen/trach/etc. We know God is in control of Dillon's health and life, but this is not so easy to remember when you are up in the night struggling to help your little boy to breathe, and sometimes only being able to watch him arch in pain and tremors, so weak and helpless. Please pray for us. In praying scripture, the following passages are applicable for this situation.
1Cor. 1:27b God hath chosen the weak things of the world to confound the things which are mighty; 28 And base things of the world, and things which are despised, hath God chosen, yea, and things which are not, to bring to nought things that are: 29 That no flesh should glory in his presence. 30 But of him are ye in Christ Jesus, who of God is made unto us wisdom, and righteousness, and sanctification, and redemption: 31 That, according as it is written, He that glorieth, let him glory in the Lord.
James 5:14 Is any sick among you? let him call for the elders of the church; and let them pray over him, anointing him with oil in the name of the Lord: 15 And the prayer of faith shall save the sick, and the Lord shall raise him up; and if he have committed sins, they shall be forgiven him. 16 Confess your faults one to another, and pray one for another, that ye may be healed. The effectual fervent prayer of a righteous man availeth much. Thank you for taking the time to read this.
Josiah and Tiffany Kuenzi
www.DillonsMommy.blogspot.com
www.JosiahnTiffany.com
http://www.christianlaw.org/newsflashes/newsflash/ffdl_vid.html
Sunday, August 26, 2007
Family Fun
(This is being posted as Aug 26 - but that is the date I started it - It is actually getting posted on Aug 28)
On August 10 Dad, Mom and Hannah came in from WV, the next day Ezra and Daniel flew in from TX and CA. They were here until the 15th. While they were here we went to the King of Prussia mall and to a lake for a picnic. It was the first time the uncles saw JayDonn. On the 14th, my mom and grandma came in from OH. Lots of family in one house! Mom and Grandma yesterdat morning. While they were here we had tons of doctor appointments, I'll try to recap them.
On August 10 Dad, Mom and Hannah came in from WV, the next day Ezra and Daniel flew in from TX and CA. They were here until the 15th. While they were here we went to the King of Prussia mall and to a lake for a picnic. It was the first time the uncles saw JayDonn. On the 14th, my mom and grandma came in from OH. Lots of family in one house! Mom and Grandma yesterdat morning. While they were here we had tons of doctor appointments, I'll try to recap them.
- Sleep Study - My mom stayed overnight at CHOP with Dillon (they wouldn't let me have JayDonn over night so she stayed for me.) I am very proud of her as this was a big step for her. The results according to the tech would be inconclusive since Dillon has so many secretions. The Puml. Docs, however say he stopped breathing 6 times (before the tonsils came out it was 8) an hour. They have put Dillon on oxygen for at night. The first three night he didn't need it, but all yesterday and today he has needed it pretty much the whole day. (Josiah wrote more on the oxygen this morning so please read that post for more info).
- Josiah and I spoke with David Gibbs III on the pone for about an hour. He is willing to help us in any ways that he can. Ezra spent some time with him, which is how he knows about us.
- Neuro - He wants to have the EEG done to rule out seizures for sure. He doesn't feel an MRI is critical right now, but we may get one done depending on who does the EEG. David Gibbs had asked if he were given a "life expectany" for Dillon, so I asked the neurologist...loaded question - I know. Children with his disabilities live past age of 25 only 15% of the time. Usually lung or kidneys are the reason for the shorter life.
- Hearing - The cable for his hearing test was broken when she tried to use it so we could not run the test. Instead, the audiologist decided to run some other testing. For the first time ever Dillon's ears are testing as healthy. His ears are hearing now - but we still have no idea if his brain is hearing. It is like his eyes, they are healthy but his brain is not getting the information of what he is seeing. However, the last two times we tested his brain there were slight improvements each time so it is hopeful. She does not want us using the hearing aids until the next test. She has only had two people ever who have improved like we are hoping Dillon is. KEEP PRAYING! This was the only one I consider positive of all the appointments.
- Please read the previous post by my husband as far as our appointment in CHOP yesterday and a general summary of what is going on. I am so tired of all these doctors who see Dillon for 15 minutes telling me he is tight. Even his physical therapist is tired of hearing that, she sees him for an hour every week and knows that he is not tight all the time. We both think Dillon just fights the doctors. They are so abrupt with him and I don't think he likes them. This doctor even told us that in the future we are going to need to talk with him about botox injections to loosen the muscles. Dillon is not tight yet, they think it is a sure thing that he will be. I am not so sure. I think if we keep working with him and keep PRAYING for him he won't need any of that stuff!
Appointments with Dillon, now that he is on oxygen and all, it is getting harder and harder for me. I have tried asking individuals to go with me, but everyone has a busy life so it is hard to find someone who can take a day off work to help. I was getting discouraged from even asking since it is so hard for me to ask to begin with and then I felt even worse becuase I am sure people felt bad having to tell me they weren't able to go. However, Josiah suggested we ask Pastor for help finding people who would be willing to help. Rachel sent an email out for us. We are so thankful for those who have responded that they are willing to be put on a list for me to call when I need help. We especially want to thank Mrs. Y (who lives about five minutes from us) for her willingness to help me with any and all appointments that she possibly can! It is such a blessing to me. It is also a great lesson for me - to put aside self and accept help. But thank you Mrs. Y for your friendship already...I am looking forward to building a deeper friendship with you!
That's about it. Pictures are taking too long for me to get them on my blog right now, but there are new ones on our website. http://josiahntiffany.com/family.html Click on the box on the left side to see more.
Saturday, August 04, 2007
"What to do about Your Brain-Injured Child"
I have a bad habit of listening to people and taking what they say to be truth. Long ago I found out about a book called "What to do about Your Brain-Injured Child" by Glenn Doman. I do not even remember how it came across my path. I asked a few people about it and was told how bad it was. I asked a doctor at St. Christopher’s about it and was told not only is it horrible but that she knew a mother who killed her child and then herself over it. Naturally, I didn’t even bother to read the book even though I had bought it from half.com. As you saw from the post about Mondays appointments, doctors have given up on Dillon. They don’t give me anything hope in helping him to get better. Out of desperation and curiosity I took the book off my shelf and began reading. I was amazed at what I read; I walked around the house reading as I went. Even when I woke up in the middle of the night to feed Jay I would force my eyes to focus so that I could continue reading. I am going to try to sum up some of the things I read, however, for anyone with a brain-injured family member – READ THE BOOK! Or even for those of you who want to understand Dillon better, please read the book.
Glenn Doman started as a physical therapist who desired to learn as much as he could. He came across a child who was no more than two feet long, but had the head of a normal adult, and spoke fluently. He was eleven years old. Mr. Doman found the child’s doctor Fay Temple, and they ended up working together for many years. You really need to read to understand it all, but basically a group of doctors, nurses, therapists, etc. joined together to try to help the brain-injured child. Theywere willing to let the team as a whole “attack” their methods. Their goal was to figure out why they were ineffective. Their answers were always, “because this is how we have always done it”, or “because this is how we were taught to do it.” To make a long story short, this group of people has had an institute in Philadelphia for 51 years now. Their therapy ideas have done amazing things with children. One place in the book it says that they work with kids in comas ranging from 60 days to several years. About 50% of the time they can bring children of out comas! They have helped children to walk, talk, see and hear. The idea is to do the therapy with the child every waking hour. You need to find the break in their brain and work to fix it. Therapy shouldn’t be working with arms and legs that work perfectly fine, it should be working to fix the injured brain. They said for children who have light reaction only, which is what Dillon has, to shine a flash light in their eyes from 18 inches away for two second. Do this ten times with 3 seconds in between each time. This allows their eye to dilate 120 times whereas in a normal day it would be so many less. This works their brain in the area they do have to make it stronger with the hope of the child being able to see outline after a while. Then the therapy would change until they could see more, etc. Another idea they had is for the child who on the tummy can move their arms and legs but aren’t getting anywhere. They said to buld an 8 foot long ramp with 8 inch sides and 30 inches wide. It is to be elevated high enough that the smallest movement of the part of the child will push them down. This encourages the child and takes away the “I failed again!” attitude. It was so good for me to be reminded that even though Dillon can express it he knows when I am saying “you failed again” instead of “good boy, you did it!”
There was so much information in the book I can’t even begin to put it all in here, but I did call the institute. They offer classes for both parents that are 5 days long, all day, with only very short breaks. This class is just over $1,600. There are then more intense levels of therapy you could continue with if you decide. The appointment to have your child examined is about $3,000 and then the most intense level requires a visit every 6 months that is about $4,500 (however these visits are a full week long at the institute.)
So where are we at with this? I have decided to do as much as I can and to do it for no less than 3 months in order to give it a fair chance. These people are the only ones who think it is possible to help a brain-injured child get WELL, not just better but well! I am so tired of taking my son to people who take away hope; I am willing to try what these people say. If God still doesn’t want Dillon to get well, he won’t, but at least I will never look back and say “did God just want to see if I would be selfless enough to commit myself to helping Dillon? Did I just give up on God? Did I not have faith that God could heal?” I won’t have those doubts; I will look back knowing that I did everything I could to help Dillon be the most he can be. And no, doing what I can is not taking God out of the equation. When you get strep throat – do you take medicine or do you sit back and say “God can heal it.” When you have a head ache, do you take pain killers or do you say “I am not going to take anything because God must want me to have it since He allowed me to get it.”? I know that if this therapy, or any therapy works for Dillon, it will be ONLY because God allowed it to work for him. Dillon is in God’s hands, but as his mother I believe God wants me to do everything I can to try to help Dillon. I hope this makes sense because I really have given this much thought. I do not think it is a lack of faith to try different things, just a it is not lack of faith to take medicine for other things. Okay, so my schedule is this:
Starting at 10 am and going every hour until 10 pm (Sundays are off, hours of therapy are off as well). We start with the vibrator for about 1.5 minutes, then we do two times of lemon or lime juice on his tongue, then we do the flashlight in his eyes, then we do the ice cold thermometer on the back of his mouth. Plus three times a day Josiah and I are “patterning” Dillon. This is where we put him on his tummy and move his arms, legs, and head in the pattern of how he would “grunt crawl”. We started this on Thursday and already we are seeing him lift his head and try to move his arms and legs to try to move. Tonight, Josiah and I built him the ramp in hopes of encouraging him by letting him feel himself actually moving. We are so happy with how he has been doing the last couple of days, I am more determined than ever to give this a try.
I have to – for Dillon.
Glenn Doman started as a physical therapist who desired to learn as much as he could. He came across a child who was no more than two feet long, but had the head of a normal adult, and spoke fluently. He was eleven years old. Mr. Doman found the child’s doctor Fay Temple, and they ended up working together for many years. You really need to read to understand it all, but basically a group of doctors, nurses, therapists, etc. joined together to try to help the brain-injured child. Theywere willing to let the team as a whole “attack” their methods. Their goal was to figure out why they were ineffective. Their answers were always, “because this is how we have always done it”, or “because this is how we were taught to do it.” To make a long story short, this group of people has had an institute in Philadelphia for 51 years now. Their therapy ideas have done amazing things with children. One place in the book it says that they work with kids in comas ranging from 60 days to several years. About 50% of the time they can bring children of out comas! They have helped children to walk, talk, see and hear. The idea is to do the therapy with the child every waking hour. You need to find the break in their brain and work to fix it. Therapy shouldn’t be working with arms and legs that work perfectly fine, it should be working to fix the injured brain. They said for children who have light reaction only, which is what Dillon has, to shine a flash light in their eyes from 18 inches away for two second. Do this ten times with 3 seconds in between each time. This allows their eye to dilate 120 times whereas in a normal day it would be so many less. This works their brain in the area they do have to make it stronger with the hope of the child being able to see outline after a while. Then the therapy would change until they could see more, etc. Another idea they had is for the child who on the tummy can move their arms and legs but aren’t getting anywhere. They said to buld an 8 foot long ramp with 8 inch sides and 30 inches wide. It is to be elevated high enough that the smallest movement of the part of the child will push them down. This encourages the child and takes away the “I failed again!” attitude. It was so good for me to be reminded that even though Dillon can express it he knows when I am saying “you failed again” instead of “good boy, you did it!”
There was so much information in the book I can’t even begin to put it all in here, but I did call the institute. They offer classes for both parents that are 5 days long, all day, with only very short breaks. This class is just over $1,600. There are then more intense levels of therapy you could continue with if you decide. The appointment to have your child examined is about $3,000 and then the most intense level requires a visit every 6 months that is about $4,500 (however these visits are a full week long at the institute.)
So where are we at with this? I have decided to do as much as I can and to do it for no less than 3 months in order to give it a fair chance. These people are the only ones who think it is possible to help a brain-injured child get WELL, not just better but well! I am so tired of taking my son to people who take away hope; I am willing to try what these people say. If God still doesn’t want Dillon to get well, he won’t, but at least I will never look back and say “did God just want to see if I would be selfless enough to commit myself to helping Dillon? Did I just give up on God? Did I not have faith that God could heal?” I won’t have those doubts; I will look back knowing that I did everything I could to help Dillon be the most he can be. And no, doing what I can is not taking God out of the equation. When you get strep throat – do you take medicine or do you sit back and say “God can heal it.” When you have a head ache, do you take pain killers or do you say “I am not going to take anything because God must want me to have it since He allowed me to get it.”? I know that if this therapy, or any therapy works for Dillon, it will be ONLY because God allowed it to work for him. Dillon is in God’s hands, but as his mother I believe God wants me to do everything I can to try to help Dillon. I hope this makes sense because I really have given this much thought. I do not think it is a lack of faith to try different things, just a it is not lack of faith to take medicine for other things. Okay, so my schedule is this:
Starting at 10 am and going every hour until 10 pm (Sundays are off, hours of therapy are off as well). We start with the vibrator for about 1.5 minutes, then we do two times of lemon or lime juice on his tongue, then we do the flashlight in his eyes, then we do the ice cold thermometer on the back of his mouth. Plus three times a day Josiah and I are “patterning” Dillon. This is where we put him on his tummy and move his arms, legs, and head in the pattern of how he would “grunt crawl”. We started this on Thursday and already we are seeing him lift his head and try to move his arms and legs to try to move. Tonight, Josiah and I built him the ramp in hopes of encouraging him by letting him feel himself actually moving. We are so happy with how he has been doing the last couple of days, I am more determined than ever to give this a try.
I have to – for Dillon.
Wednesday, August 01, 2007
Doctors...
I called the feeding team back yesterday to see why they aren't doing something to find out more about Dillon's swallows, they didn't call me back. So I called again today. They said it isn't something they would order because they wouldn't follow-up once we get the results so I can ask Pulm. (lung docs) or his Ped. So I'll do just that!
The vision therapist said she has heard of other parents who didn't like the eye doctor when I told her of our experience. I am putting in writing what happened, at the manager of the departments request, and she will try to schedule me with the chief of ophthalmology so I can inform him. Something needs to be done so this doctor will learn to have some compassion for special needs children and their families.
:-)
I like when I get answers and can hopefully change things so other parents don't have to deal with heartless doctors
The vision therapist said she has heard of other parents who didn't like the eye doctor when I told her of our experience. I am putting in writing what happened, at the manager of the departments request, and she will try to schedule me with the chief of ophthalmology so I can inform him. Something needs to be done so this doctor will learn to have some compassion for special needs children and their families.
:-)
I like when I get answers and can hopefully change things so other parents don't have to deal with heartless doctors
Tuesday, July 31, 2007
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?
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?
Saturday, July 21, 2007
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:
Tuesday, July 17, 2007
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!
Sunday, July 15, 2007
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
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
Friday, July 13, 2007
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)
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)
Tuesday, June 26, 2007
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.
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!
Monday, June 18, 2007
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.
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.
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