Friday, August 31, 2007
(For all you picture-lovers I tried to get a picture but it just wasn't working...sorry!)
Tuesday, August 28, 2007
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
Sunday, August 26, 2007
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
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
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