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