Alright, my last post was that I didn't feel like taking the time to upload videos, but this one is a must see! Sorry that JayDonn was almost out of the video shot, I ws holding the camera while hiding behind a book. We were playing peek-a-boo and JayDonn was laughing. Make sure you have you volume on for this one!
Saturday, October 27, 2007
Pictures!
Everyone's favorite: Pictures! Hope you enjoy.
I have some videos, but honestly I don't want to put them on right now - it takes a lot of time to upload each one and then link it to my blog. So maybe I can do it later. Have a great weekend everyone!
That's one way to enjoy a "good" book!
My mom will appreciate this picture more than anyone else!
He's an angel when he's sleeiping
He's always an angel - and I don't mean that he's always sleeping (although that's true too...)
I can't help taking pictures of him sucking his thumb
Daddy and Dillon sitting together
He is so content in his Daddy's arms
Finally! The pumpkin patch pictures! Jay didn't like being put don't in the pumpkins though.
If you can remember the picture taken from last year, Dillon is so much bigger. I couldn't get a good picture of him. He kept falling over so I had to just quick take it. Ican't believe the difference a year can make!
I really liked how the picture of Dillon and I turned out last year. This year I was a mess from trying to take care of the two of them, but it is a memorable picture nontheless.
I love you, Dillon!!
I love you too Jay!
He is still a little short for this. Plus he gets mad after about five minues, but it is cute. His eyes are level with tray if he weren't sitting on a blanket.
I love the men in my life. This is Daddy greeting JayDonn yesterday when he came home from work.
Daddy saying Hi to his "Dillon-Boy"
Daddy was playing with a remote control car in front of Jay. Jay was having a great time trying to catch it and eat it.
I have some videos, but honestly I don't want to put them on right now - it takes a lot of time to upload each one and then link it to my blog. So maybe I can do it later. Have a great weekend everyone!
Thursday, October 25, 2007
New Doctor
I went to the new doctor for the kids today. He was really nice! He took a little more than an hour with us and when they went to schedule my next appointment (well check up for both boys) they allowed 1.5 hours for us! I think this one is going to work out much better. He was speechless over some of the things we have been dealing with at our pediatrician. I am really praying this will be a better place to go, someone who will see Dillon as a person and help me as much as he can. It is about 40 minutes away - but it will be worth it! Thank you Lord for doctors who do care and are willing to give you the time and help you need!
James 1:5
James 1:5
If any of you lack wisdom, let him ask of God, that giveth to all men liberally, and upbraideth not; and it shall be given him.
What a promise! If we lack wisdom God will give it to us if only we ask! When you take the verse in context - there are just so many "gold nuggets" I have to put all the verses in.
James 1:1-8
James, a servant of God and of the Lord Jesus Christ, to the twelve tribes which are scattered abroad, greeting. My brethren, count it all joy when ye fall into divers temptations; Knowing this, that the trying of your faith worketh patience. But let patience have her perfect work, that ye may be perfect and entire, wanting nothing. If any of you lack wisdom, let him ask of God, that giveth to all men liberally, and upbraideth not; and it shall be given him. But let him ask in faith, nothing wavering. For he that wavereth is like a wave of the sea driven with the wind and tossed. For let not that man think that he shall receive any thing of the Lord. A double minded man is unstable in all his ways.
Yesterday started off with Dillon being more awake then I have seen him in a long time. The speech therapist came and he was "walking" (he moves his legs but doesn't really bend the knee so it looks like he is walking while laying down). He seemed extra sensitive to the vibrator - we thought this was due to his alert state of mind. His heart rate started going high and no matter how I comforted him or repositioned him it wouldn't come down. So we pretty much stopped therapy and just let him calm down. Dillon then started moving as he does when he wants to be on his belly. I helped him roll over. He Started lifting his head and dropping it very fast and was turning his head from side to side. As first I thought, WOW this is great. Then as it continued I started to fear. (I know, I know.... don't say it!) But I started to wonder if it was a seizure. As it went on and on I called Josiah at work. He told me to call the doctor. So I did. His answer? Was he less responsive then normal? Baseline responsiveness for Dillon is next to nothing so it is impossible to tell. So basically, he can't tell me one way or another for sure. The doctor thinks it was a seizure (which means it lasted about 45 minutes!) I am not too sure. The physical therapist came right before the doctor called. After the call we moved him to his back again and he was kicking his legs a little, stretching, holding the vibrator, etc. The rest of the day he seemed "with it" more than he has in a long time. Now the PT told me not everyone is tired after a seizure, even this long of one. So I have no idea if Dillon had a 45 minute seizure of if he was actually just moving. I have been doing leg PT with him 6-7 times a day for the last week and a half, so maybe it is just helping. I feel ridiculous. I pray and pray for him to move more and then when he does I am terrified it was a seizure! So this is why James 1:1-8 was on my mind this morning - we need wisdom! There is no way for me to know what is happening in Dillon's brain - only God knows. He is in control, He can give us the wisdom to know what to do.
Tuesday, October 23, 2007
Blessing!
Want to hear a blessing? The appeal for the 1.5 hour extra per night of nursing care was scheduled for today at 2:30. Mrs Y was going to go to Philly with me, where we were going to meet up with our lawyer to appeal the decision not to grant us the extra time. Yesterday, out of the blue, they called me and said, "Your appeal is scheduled for tomorrow?"
"Yes..."
"Well you have been approved!"
"Wait, so does that mean I don't have to come? They decided to give us the extra hours?"
"Yes."
Praise the Lord! This saves me a trip into Philly, trying to find parking, paying $20 to park, going to the meeting, etc. I called the lawyer to let her know she didn't have to go and I asked if this is normal. She said no, what probably happened is no one looked at our case until yesterday and when they did they said "Why are we fighting this?" And since no one had a good answer they decided to approve it!
"Yes..."
"Well you have been approved!"
"Wait, so does that mean I don't have to come? They decided to give us the extra hours?"
"Yes."
Praise the Lord! This saves me a trip into Philly, trying to find parking, paying $20 to park, going to the meeting, etc. I called the lawyer to let her know she didn't have to go and I asked if this is normal. She said no, what probably happened is no one looked at our case until yesterday and when they did they said "Why are we fighting this?" And since no one had a good answer they decided to approve it!
Thursday, October 18, 2007
Pumpkin Patch! and "Self-Talk"
Today was our second time going to a M&M (Mommy and Me) Activity. Dillon and I went last year to the pumpkin patch and this year all three of us went. It was beautiful weather - it really couldn't have been any better! Thank you to the ladies to planned it and made the lunch - it was great! Some of the men who own the farm picked up my double stroller and put it on the wagon for the hay ride, then took it down after it was over. That in and of itself was a blessing so I didn't have to try to go without it or try getting it up myself. When I went to pay the man didn't even charge me for Dillon (supposed to be $2.50 for over 1 year old) because he understood that Dillon "couldn't enjoy it." That was nice - so I gave him one of "Dillon's Journey". Pray for him - maybe God will use it in his life! Pictures will come this weekend. For some reason my computer won't read my memory card so I have to wait for the weekend to put them on my husband's laptop (which he leaves at work during the week).
"self-talk" - For some reason I felt really sick last night. Josiah took JayDonn to church and I stayed home with Dillon. I was doing a devotional study and I came across this suggestion and adapted it to fit me. It was talking about how our actions and attitudes are a result of our "self-talk". You know - all those times you are talking to yourself in your mind. What are you telling yourself? Things that are true and good and encouraging? Or, like me, do you let yourself feel bad and get depressed, etc.? So the idea is to write down the sinful "self-talk" thought on a 3X5 note card and on the other side write a Bible verse that counters the sinful thought as well as a true thought and an action. I came up with 7 that I find myself thinking. An example of one is: "Dillon is a vegetable." Thinking that Dillon can't make any more progress, thinking "why bother?" or "I should just give up on all the therapies - they aren't working anyways" or "it's a waste of time". On the back of the card I wrote Psalm 139:14 "I will praise thee; for I am fearfully and wonderfully made: marvellous are thy works; and that my soul knoweth right well" verse 17 "How precious also are thy thoughts unto me, O God! how great is the sum of them!" The right thought is "God made Dillon - so he IS perfect. He is just how God wanted him to be. God can and is going to use his life for something wonderful!" My action is: Count my blessings. Start listing everything Dillon can do (he can gag, he can cough, he is LIVING, etc.) Actually write it down.
The idea is to find the most common sinful self talk you have and not only use Bible to correct your thoughts but then take it a step further with a proper action. Let me know what you think of this idea. Let me know if you try it!
"self-talk" - For some reason I felt really sick last night. Josiah took JayDonn to church and I stayed home with Dillon. I was doing a devotional study and I came across this suggestion and adapted it to fit me. It was talking about how our actions and attitudes are a result of our "self-talk". You know - all those times you are talking to yourself in your mind. What are you telling yourself? Things that are true and good and encouraging? Or, like me, do you let yourself feel bad and get depressed, etc.? So the idea is to write down the sinful "self-talk" thought on a 3X5 note card and on the other side write a Bible verse that counters the sinful thought as well as a true thought and an action. I came up with 7 that I find myself thinking. An example of one is: "Dillon is a vegetable." Thinking that Dillon can't make any more progress, thinking "why bother?" or "I should just give up on all the therapies - they aren't working anyways" or "it's a waste of time". On the back of the card I wrote Psalm 139:14 "I will praise thee; for I am fearfully and wonderfully made: marvellous are thy works; and that my soul knoweth right well" verse 17 "How precious also are thy thoughts unto me, O God! how great is the sum of them!" The right thought is "God made Dillon - so he IS perfect. He is just how God wanted him to be. God can and is going to use his life for something wonderful!" My action is: Count my blessings. Start listing everything Dillon can do (he can gag, he can cough, he is LIVING, etc.) Actually write it down.
The idea is to find the most common sinful self talk you have and not only use Bible to correct your thoughts but then take it a step further with a proper action. Let me know what you think of this idea. Let me know if you try it!
Monday, October 15, 2007
4th Birthday!
Today is my "spiritual birthday". If you don't know what I mean by that I will explain. It was four years ago today that I sat in church next to Anne during special services. Our Assistant Pastor told his story and it changed my life forever. I realized that I had always had a "belief in God" but that it was never personal. For the first time I saw I had sinned against God, I have told lies, I have had angry thoughts against people (which God says is the same as committing murder in the heart), etc. I saw that I was wicked. I saw that I needed Christ's blood to cleanse me of my sins. I cried to God and asked him to forgive me of my sins, to be Lord of my life. From that moment on, God was the Lord of my life. I have tried to turn from sin (doesn't mean I've never sin again, just means that I do not sin willingly. When I do sin, I try to ask forgiveness right away and do not want to continuing sinning.) Having Christ to fully rely on is the only way I have made it this far with Dillon. As I have said before, I know Dillon will one day be healed. He will walk and talk and he will be like that for eternity! The only way I will be able to see him like that for eternity is because of turning from sin and turning to Christ as I did four years ago today. If this is something you have not done...if you can't put a time and place on a timeline of your life as to when you were "saved" then chances are you just have a "belief" like I did for so many years that will NOT make you acceptable in God's eyes. If you have not turned from sin and turned to God you will not see Dillon healed, you will be in Hell instead of in Heaven with him. God is just, He cannot let people into Heaven just because they are "sorry" they need to turn to him, turn away from sin, turn away from having control over your life and give it to God.
PLEASE email me if you want to know more. It would make Dillon's suffering worth it if YOU were able to spend all eternity in Heaven instead of HELL!!
PLEASE email me if you want to know more. It would make Dillon's suffering worth it if YOU were able to spend all eternity in Heaven instead of HELL!!
Friday, October 12, 2007
Seizures
Have you ever had your heart ripped out and torn into tiny little pieces? Have you felt discouraged? Felt like giving up?
Dillon's neurologist called today with the results from his EEG. He is having the same type of seizure that he had in December. In about 22 hours he had 23 seizures lasting 10-30 seconds each. It took 20-30 minutes for him to "return to baseline" after each seizure. They aren't causing more damage, they are a result of all the damage done to his brain at birth. Dillon has to go back on the Topamax. We are going to have to watch his weight very closely. There may be one other drug we can try if he loses weight. Otherwise we have to go to an injection that has very bad side effects, it is a six week long drug. I believe he would have to have a nurse check his blood everyday to monitor him because the chance of these bad side effects is so high.
I just want my little boy to get better. I praise the Lord for the improvements with his hearing, I haven't "forgotten" that blessing! It is hard to know, though, that his brain is still suffering so much, that his brain isn't recovering. I am reminded again of Luke 22:42 where Christ was about to go to the horrible death of the cross, "Saying, Father, if thou be willing, remove this cup from me: nevertheless not my will, but thine, be done." It is that part about not my will but His be done, that I keep struggling with! It is so hard to watch my little boy go through all of this. To watch him lay on the floor without moving (other than coughing) when he should be running around my house, playing, laughing, talking, eating, etc.
I am taking this news pretty hard, so if you think of it please pray for us. Thank you!
Dillon's neurologist called today with the results from his EEG. He is having the same type of seizure that he had in December. In about 22 hours he had 23 seizures lasting 10-30 seconds each. It took 20-30 minutes for him to "return to baseline" after each seizure. They aren't causing more damage, they are a result of all the damage done to his brain at birth. Dillon has to go back on the Topamax. We are going to have to watch his weight very closely. There may be one other drug we can try if he loses weight. Otherwise we have to go to an injection that has very bad side effects, it is a six week long drug. I believe he would have to have a nurse check his blood everyday to monitor him because the chance of these bad side effects is so high.
I just want my little boy to get better. I praise the Lord for the improvements with his hearing, I haven't "forgotten" that blessing! It is hard to know, though, that his brain is still suffering so much, that his brain isn't recovering. I am reminded again of Luke 22:42 where Christ was about to go to the horrible death of the cross, "Saying, Father, if thou be willing, remove this cup from me: nevertheless not my will, but thine, be done." It is that part about not my will but His be done, that I keep struggling with! It is so hard to watch my little boy go through all of this. To watch him lay on the floor without moving (other than coughing) when he should be running around my house, playing, laughing, talking, eating, etc.
I am taking this news pretty hard, so if you think of it please pray for us. Thank you!
Tuesday, October 09, 2007
Sunday, October 07, 2007
Pictures
I put JayDonn down on the floor next to Dillon. A few minutes later I came back into the living room to see this...
He turned enough to get his feet on Dillon and fell asleep. I think we have to teach Jay not to "walk all over his big brother!" (quite literally!!)
Walks are hard work when you have to sit in a stroller and look at everything that goes by!
Isn't she beautiful?
Daddy put their car seat in the van on Saturday. It is much better this way. It was very hard to get Dillon in without hitting his head since he is getting so long but still can't hold his head. I can sit on the back seat and face them. Daddy even put a cool light in the van so I can see Dillon better - I'll have to get a picture of that sometime.
He turned enough to get his feet on Dillon and fell asleep. I think we have to teach Jay not to "walk all over his big brother!" (quite literally!!)This is a mom who lives right near me. Her daughter has the same physical therapist and vision teacher. The little girl has clouded corneas so she can see light, but nothing else. Please pray for them. She had one cornea transplant and it didn't work she will be having one in each eye again soon. Please pray I can be an encouragement to them!
Walks are hard work when you have to sit in a stroller and look at everything that goes by!
Isn't she beautiful?
Daddy put their car seat in the van on Saturday. It is much better this way. It was very hard to get Dillon in without hitting his head since he is getting so long but still can't hold his head. I can sit on the back seat and face them. Daddy even put a cool light in the van so I can see Dillon better - I'll have to get a picture of that sometime.
Jay loves his new car seat, he can sit tall and look around. Plus he can see Mommy instead of the back of a seat!
Dillon has had a rough day today. He did not do well the whole way to church, during church, and home from church. He did okay in the afternoon and then was terrible during night church. The poor boy just has so much to cough out. He is resting right now on the floor with oxygen. If you think about it, please pray he will have a better day on Monday. I have been trying to do his therapy with him, he seems to like it. I did it a lot on Saturday and he enjoyed it. We take Sundays off, so tomorrow I will start again - IF he is feeling better. Thank you - and remember - praying DOES make a difference! If you start to doubt if God is hearing our prayers for Dillon just remember that he is now able to hear!! (That's what I do when I start thinking that God isn't answering our prayers!)
Friday, October 05, 2007
Tuesday, October 02, 2007
Remembering
This is more for me than anything - don't feel like I expect you to read it all! It is just that I went back and read my first two blogs and realized that I had forgotten that Dillon had certain tests done! Also, I was thinking that I wished I had started blogging right away after Dillon was born as I forget the order of events from the NICU and all that we were going through. I decided to take all the emails to our church that was sent to update people and put them in the blog so I will have them.
June 16, 2006 8:52pm
Dillon Josiah was born around 8:15(?). He has good color and heart rate,
but will not breathe on his own. Josiah and Tiffany ask us to pray for
him.
Thanks for your prayers. I know they mean a lot to them and Dillon.
Stacey
June 16, 2006 11:02pm
Dillon is doing better now. He has begun to breath on his own. The nurses will watch him carefully over the next 24 hours to make sure all is well. Please continue to pray!
Doug Hammett, Pastor
June 17, 2006 7:43am
Please continue to pray for Dillon, Tiffany and Josiah. They are headed to St Christophers in Philadelphia right now, 7:30AM. They do not know what the problem is, but hopefully the Childrens Hospital there will be able to address it.
Doug Hammett, Pastor
June 17, 2006 6:21pm
I left the hospital at about 3PM today. They were just preparing to take Dillon for a CAT scan. At present he is doing well with the medication they have him on, which seems to be stopping or slowing the seizures. They do not have any test results back yet, and we are not sure if they will get any before Monday because of the weekend. Otherwise he seems to be doing well and they are monitoring him until they find out what the problem is.
Please continue to pray for Josiah and Tiffany. They are exhausted after being up all night. They will be staying at the hospital for the time being. Tiffany’s parents are expected to arrive later tonight as well.
I will update you when I know more.
Doug Hammett, Pastor
June 17, 2006 8:32pm
Dillon had a couple more seizures this evening. He is back on the ventilator to help his breathing. They are hoping to do an EEG tonight while he is sleeping.
The tests so far have come back negative and so more testing is needed. Please continue to pray! Tiffany’s parents arrived safely and are with them at the hospital.
Doug Hammett, Pastor
June 18, 2006 9:03pm
Tiffany just called and said that Dillon is back on the ventilator as of tonight. Please continue to pray. Tomorrow should be the MRI and hopefully will show the doctors what the problem is.
Doug Hammett, Pastor
June 19, 2006 9:18am
Dillon is having his MRI right now. Results should be available this afternoon. He did not have any seizures through the night. Please continue to pray!
Doug Hammett
June 19, 2006 9:40am
I just got off the phone with Tiffany; she said that Dillon's been having some seizures, and most of the seizures happen without them realizing it. The MRI is going to be an hour and then it will take a couple of hours for the results. Tiffany is planning on being there for at least a week and her parents will probably head home by the weekend or Monday. Keep on praying for the Kuenzis. One blessing so far is that they gave their tracts to a man from Nigeria who claims to be a Christian. This man was reading the tracts and the nurses noticed it, so he gave the nurses the tracts. Pray for opportunites to witness!
Anne
June 19, 2006 4:02pm
Bro. Reeder and I just came back from the hospital in Philadelphia. Please continue to pray for baby Dillon as the doctors search for the problem that is causing these seizures. The MRI came back with good results, making the doctors believe that there is no brain damage at this point. They have also pinpointed the area of the brain where the seizures are occurring. Right now, they are leaning towards a possible chemical imbalance which may be causing the seizures to take place. We will keep you posted as more information becomes available, but please keep praying!
Roland Hammett
June 19, 2006 8:53pm
Rachel and I spent the day in Philadelphia today with Josiah and Tiffany. We got to see Dillon and the doctors narrowed down the problem to three areas. The most likely one (according to the doctor) is that Dillon suffered a brain injury during birth, which is causing the seizures. 72 hours after birth (tonight) should see a gradual decrease in the seizures, if it is really a brain injury. He had a seizure while we were there, but it was the first one in quite some time. The doctors were going to give him a new seizure medicine which should help stop the seizures. Mrs. Kuenzi was a tremendous help in talking with the doctors and was able to expain a lot of the medical terms:D Keep on praying!
Anne
June 20, 2006 12:55pm
We're pleased to announce the birth of our first son, Dillon Josiah Kuenzi born Friday, June 16th 8:10PM 6lb. 10oz 21in. Mom is recovering well and baby Dillon is in stable condition at St. Christopher's hospital for Children in Philadelphia where he was transferred from Allentown. He experienced some birth trauma came out not breathing and he had to be put on the ventilator. He also is having siezures, are they are giving him several medications to get them under control. It seems he is improving a little, so it should just be a matter of time. He will be there for 1-2 weeks or so undergoing tests and treatment if all goes well. I will be commuting to work from there till he comes home.
Dillon means "Faithful" and God has already shown Himself faithful to us in this situation we're going through providing our needs and keeping us looking to him. Thank you so much for your prayer and concern. The love offering was quite unexpected and a real blessing. Thank you.
So many people are going through similar situations. Please pray that we would have specific opportunities to speak to people about Christ and be an encouragement to them in their time of difficulty. 2 pics attached. The first on from birth night and the second with Tiffany is from this morning.
Rejoicing in His Faithfulnes,
Josiah & Tiffany
June 21, 2006 8:52am
Brethren,
Continue praying for Dillon. I spoke with Josiah a few minutes ago and he said that Dillon had a better night last night. They are still waiting on the results of the overnight EEG to see if he had more seizures. At this point, it sounds as if the doctors are not confident they will ever know what is causing the seizures – they are simply trying to get them stopped. Pray for Josiah and Tiffany, that the Lord would minister to and through them at this difficult point in their lives…
Roland Hammett
June 23, 2006 1:33pm
This was an email my sister sent to a email list of Christian ladies: These are the details as I know them.
Dillon was born on Friday night (6/16) at 8:10. He weighed 6 lbs 10 oz. When he was born, he did not start to breath. So they started to give him oxygen right away. My sister (Tiffany) and her husband (Josiah) stayed with Dillon until 5:00 am. Then they went to grab a quick nap back in her room for about an hour. At 5:30, Dillon had a seizure. Later that morning, they transferred him to a children's hospital in Philadelphia, about 1 1/2 hours away. Since being there he has suffered from many more seizures. They have run blood and urine test, a spinal tap, CatScan, MRI of the brain, EEG's and is currently hooked up to a machine for EEG's. All of the test have not found anything. They thought for awhile it might have been cuz he was in distress during birth, the scans of the brain have not shown any signs of being deprived of oxygen. Since yesterday, I believe he has only had one or two seizures. So that is a positive sign. As of now, they are not saying if he will be in the hospital for two more weeks or months. Today, he started to move his legs! That is a good sign. Due to the medication, he has been a bit "lazy." They did not want him to choke on the breathing tubes or try to pull them out. Today he had surgery to insert a pickline into his heart, so they don't have to us the IV's, mostly because he is swollen and they can't get to a vein and the veins are blowing. The doctors said the surgery went well.
They named him Dillon, because they wanted a name that meant something to them and his name means "faithful". They know the Lord will be faithful in this also, but they still appreciate the prayers on their behalf.
Additional update: He had surgery late last night to put a line in his chest for an IV. He was doing well last I heard. He has started to become active. He moved his arm once above his head. That is all I have heard.
Thanks for your prayers,
Victoria
June 25, 2006 12:18am
Church Family,
I stopped in to check on baby Dillon yesterday at the hospital. He has most of the tubes out now and is maintaining his own body temperature. My understanding is that the seizures have stopped, so the next step is to start weaning him off of the anti-seizure meds and monitor him to see if the seizures start again. Pray specifically that he will develop the needed reflex for eating naturally. Right now, he is being fed through a tube. It looks like he will be in the hospital for at least another week, depending on how things go. Continue praying for his recovery and for Josiah and Tiffany during this trial of their faith!
Roland D. Hammett
June 25, 2006 9:43am
This was written Saturday, but did not go through.
Hello,
First I want to thank everyone for all the prayers, it has been amazing to hear how many people are praying for our little boy. Thank you too for all the notes and cards Thursday it was an encouragement to read the verses many of you said were special to you in hard times. The past couple of days have been very good days for Dillon. Thursday's two main blessings were that I was able to hold him for about two hours (previously I have held him for a total of about 5 minutes) and that they started him on food. They are feeding him through a tube right now, but at least he is eating and handling it well. They will have him up to full feedings by the end of today. Yesterday morning when I went down I saw my little boy with no breathing tube in his mouth and dressed in his own clothes. He is able to hold his body temp so they have taken him out of the heat bed and have him in a crib. I was able to hold him pretty much the whole day yesterday! He had up to 3 IVs in him at once because his veins were difficult. Wed. night they took him into OR and put an IV that goes directly into his chest, so he no longer has any of the others that were turning all red. They took him off one seizure med. and Sunday they will lower another. The Neurologist said he will be on the third for about 3 months, but hopefully at low levels. Early next week they will do another EEG to see if he is having more seizures or not. They will also do another MRI next week to see if there is any brain damage (it may not have shown up right away). Please pray for both of these test and that his gag reflex will start to work (he cannot nurse until he has this plus he can swallow at all until it starts to work. At this point they don’t know if it isn’t working because of the sedition or because of damage from the lack of oxygen/seizures). We are also looking forward to him being able to open his eyes soon! Thank you again for all your prayers and support!
Tiffany, Josiah and Dillon Kuenzi
P.S. We have some pictures to send you, but I am unable to on this computer...we will get them out asap! :-)
June 26, 2006 9:15am
I just spoke with Tiffany. She said the EEG for Dillon is scheduled around 1 this afternoon. He seems to be doing ok at this point. Tiffany’s parents left this morning but now the Kuenzi family is here. Also, Josiah was on his way to work when he hydroplaned his car, so now Tiffany is on her way to go get him. Keep praying for the whole family.
Anne
June 27, 2006 6:19pm
Dillon's EEG was moved to tomorrow, they want him completely off of the one drug before they do the EEG. His MRI was today at 9 am but he moved his head while breathing just enough that they had to re-do it at 4pm so we will not know the results until tomorrow. Thank you again for your prayers, the results of this test should tell us how much/if any brain damage was done.
Thank you,
Tiffany Kuenzi
July 3, 2006 11:56am
Dear Church Family,
The doctors say Dillon's diagnosis thus far is "acute hypoxic-ischemia" caused by the asphyxia injury at birth. Basically all this means he suffered lack of oxygen especially to his brain cells and the latest MRI reveals brain damage that appears will mostly affect his motor skills. This is going to be a long term difficulty and only time will tell exactly how it will affect him.
Dillon will be at the hospital indefinitely. He is on and off oxygen and is unable to swallow. Because of this they must suction his oral secretions frequently so he can breathe. He is being fed through a tube and if he doesn't learn to swallow via therapy in the up-coming weeks / months he will have to have a more permanent feeding tube surgically placed directly to his stomach. They have already begun therapy with splints on his hands and wrists.
The doctors have stated 2 options after his stay at the NICU - Dillon can be placed in an intermediate care unit (nursing home for babies) or we can have in home nursing care. One of the NICU nurses has been especially helpful and has assured Tiffany that she can be taught how to properly care for Dillon at home.
Thank you for all your prayer and support at this time. We are accepting this as a long term situation and are leaving it in God's hands. If He chooses to make Dillon better, wonderful! but if not, we know that His way and design is perfect and we can rest in His promise that "My grace is sufficient for thee."
2Cor.12:9 And he said unto me, My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities, that the power of Christ may rest upon me. 10 Therefore I take pleasure in infirmities, in reproaches, in necessities, in persecutions, in distresses for Christ’s sake: for when I am weak, then am I strong.
Depending on Him,Josiah Kuenzi Ps. 18:30
July 9, 2006 9:19pm
Hello,
We just wanted to let you know that the surgeons talked with us tonight. Dillon is rescheduled for surgery tomorrow afternoon. If the ones before run long his will be moved to Tuesday morning. We are still praying if it is God's Will that he will start to swallow before then, and if not that the surgery will go well.
Thank you,
Josiah and Tiffany Kuenzi
July 9, 2006 10:06pm
A letter I sent to all my friends in my address book:
Hello,
I thought I would send out an email and introduce you all to my little son, Dillon Josiah Kuenzi. He was born June 16, 2006 at 8:10 pm. He weighed 6 pounds 10 ounces. There is a lot to tell but I will start at the begining that day. I worked at Sherwin Williams until 2 pm at 3 pm my labor started with contractions 7 minutes apart. By 4:30 I was calling my husband home for work because they were 3 minutes apart. We arrived at the hosptial at 6pm. I was 7 cm dialited so the midwife broke my water 20 minutes later I was fully dialated, after pushing for about an hour he was born at 8:10 - not breathing. Dillon would not breath on his own, they were bagging him in the room for a little bit then rushed him out. We finally got to see him 1.5 hours later. by 3 in the morning they had him off oxygen...he was doing well so at 5 i FINALLY decided to leave his bed side and get some sleep. They woke us up at 6:30 (Sat morning) saying he had a seziure and we would be going down to St. Christopher's hospital for children in Philly. We are still here...he has had several EEG's which showed he was having sezures very frequently that did not make his body move at all. But they are now under control. He has had many other tests as well, but the hardest one on us was the MRI which showed brain damage from the lack of oxygen at birth. They know that most of the damage seems to be in his motor skills but can not tell us what this means for his future. Dillon could be perfectly normal, or he could have many difficulties. They can not tell us why he suffered from lack of oxygen either, the whole pregnancy went very well, my labor was ONLY 5 hours start to finish, I only pushed about an hour, his heart rate was good during the whole labor and even as soon as he was born, i did not have ANY painkillers at all...we have no idea what caused it.) Dillon has not cried at all yet, nor has he swallowed. He is going in tomorrow for surgery to put a feeding tube into his tummy, which will remain there until he can swallow (which may be months until he can) We should finally be able to go home about a week after the tube is in, if all goes well. We are not sure why God has allowed this to happen, but we do know that He DID ALLOW it to happen. I never thought I would have the strength to sit by my son's bed side in the NICU for a month, but God has given the strength right when we needed it. He promises to never leave us, and He hasn't - He has been here with us the whole time. So many people have been praying for him, it is amazing to see! Our church family has lifted us up and helped us in so many ways I will never be able to express it. Some of the neat ways God was at work preparing us for this is that I had a breast pump but was told since it was made by a company that makes formula it may not be good. So Josiah returned it and bought a REALLY good one for REALLY cheap on ebay..I kept telling Josiah that I felt bad having such a nice one since I was only going to use it for when we left the baby with a sitter while we went to dinner - or small things like that. Well I have been using it nonstop since Dillon can't eat but is being tube fed my milk. Praise the Lord! Another way is that Josiah and I wanted a home birth since we were paying for all this out of our own pocket. The midwife wouldn't do a home birth though. We would joke (well half joke but i was really considering it) to not get to the hospital on time and just have the baby at home since everything was going so well. Our baby would have died in our arms if we did that! He really takes care of us!
I am attaching some pictures of our little guy
2Cor.12:9 And he said unto me, My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities, that the power of Christ may rest upon me. 10 Therefore I take pleasure in infirmities, in reproaches, in necessities, in persecutions, in distresses for Christ’s sake: for when I am weak, then am I strong.
~Tiffany Kuenzi~
July 11, 2006 12:25pm
Thank you for praying for Dillon, the surgery went well. Dillon had his eyes open and was moving a lot last night when Josiah and I saw him. The nurse said this morning he started pulling at the breathing tube - he was telling them it was time for it to come out! He is breathing on his own again and was very active this morning (in between naps, of course! :-) ) Thank you again for lifting him as well as us up in prayer.
Tiffany Kuenzi
July 11, 2006 1:16pm
The doctor extabated Dillon (took him off the ventilator) this morning. He will not be able to eat for several days and will only be on IV fluids. Later in the morning he had another visible seizure so they had to increase the meds. Pray for his strength and that God's will would be accomplished in all of this. Thanks.Josiah Kuenzi
July 13, 2006 5:07pm
Hello,
Just wanted to let you know that Dillon has just been put on the EEG again until sometime tomorrow. I think they are just looking to see how he does at this level of the meds before they send him home. He has video this time too since he is moving more. I am allowed to hold him since there is video and he also taught me how to adjust the camera and how to write a note directly onto the EEG recording. He was also just put back under the heat lamp...he was too cold. So we also need to be praying that he can hold his temp. I am not sure how many days he has to be off the heat lamp before they will send him home.
Oh, the head tech who taught Josiah how to read the EEG is the one who set it up, and he said to him it looks MUCH better already. He still seems to have times of very little brain activity and he is not sure if this should still be happening or not but at least these times are a lot shorter..he is having a lot more activity. So we will keep praying.
~Tiffany~
July 15, 2006 1:15pm
The nuerologists read the latest EEG test and saw pretty much what they expected for a baby with brain damage. The neo-natologist who is working with us is optimistic, but has informed us that at this point Dillon is still at risk of developing cerebral palsy or other physical restrictions such as not mentally developing beyond the point of a 2 year old or up-to 5 year old yet still being socially interactive. They don't really know and only time will tell.
The good news is that Dillon is completely breathing on his own and is moving around. He doesn't have anything on his face. Yay! He has developed a gag reflex, but the swallowing involves at least 12 different muscle groups and they don't expect him to be able to swallow anytime soon. He does have the feeding tube in his stomach which could be there for a long time (years or even for life). We know that God is able to perform miracles and we pray his will be done.
Thank you for all of you that have sent notes and spoken words of encouragement. Your strong faith in our God is encouraging to us in this time of uncertainty.
The new goal the doctors are shooting for that Dillon will be able to come home is Friday. No promises, but if he is feeding well through the tube and we are at a competent point of caring for him they will let us go home. The doctors said they like us since "we actually like each other and care about Dillon." They said maybe we should throw some things at them and then they'll think about letting us go home. ;-)
Josiah and Tiffany Kuenzi
July 22, 2006 5:01pmWe are in the car on the way home...with Dillon!!! Praise the Lord! Lord willing we will be in service tomorrow but the doctors do not want him in crowds so we will come in after church starts and leave before it ends. If you would like to see Dillon you can call me and come to our house during the day. We will still be making many trips back to the hospital for appointments, but at least we are going home. Thank you again for all of your prayers! Tiffany Kuenzi
June 16, 2006 8:52pm
Dillon Josiah was born around 8:15(?). He has good color and heart rate,
but will not breathe on his own. Josiah and Tiffany ask us to pray for
him.
Thanks for your prayers. I know they mean a lot to them and Dillon.
Stacey
June 16, 2006 11:02pm
Dillon is doing better now. He has begun to breath on his own. The nurses will watch him carefully over the next 24 hours to make sure all is well. Please continue to pray!
Doug Hammett, Pastor
June 17, 2006 7:43am
Please continue to pray for Dillon, Tiffany and Josiah. They are headed to St Christophers in Philadelphia right now, 7:30AM. They do not know what the problem is, but hopefully the Childrens Hospital there will be able to address it.
Doug Hammett, Pastor
June 17, 2006 6:21pm
I left the hospital at about 3PM today. They were just preparing to take Dillon for a CAT scan. At present he is doing well with the medication they have him on, which seems to be stopping or slowing the seizures. They do not have any test results back yet, and we are not sure if they will get any before Monday because of the weekend. Otherwise he seems to be doing well and they are monitoring him until they find out what the problem is.
Please continue to pray for Josiah and Tiffany. They are exhausted after being up all night. They will be staying at the hospital for the time being. Tiffany’s parents are expected to arrive later tonight as well.
I will update you when I know more.
Doug Hammett, Pastor
June 17, 2006 8:32pm
Dillon had a couple more seizures this evening. He is back on the ventilator to help his breathing. They are hoping to do an EEG tonight while he is sleeping.
The tests so far have come back negative and so more testing is needed. Please continue to pray! Tiffany’s parents arrived safely and are with them at the hospital.
Doug Hammett, Pastor
June 18, 2006 9:03pm
Tiffany just called and said that Dillon is back on the ventilator as of tonight. Please continue to pray. Tomorrow should be the MRI and hopefully will show the doctors what the problem is.
Doug Hammett, Pastor
June 19, 2006 9:18am
Dillon is having his MRI right now. Results should be available this afternoon. He did not have any seizures through the night. Please continue to pray!
Doug Hammett
June 19, 2006 9:40am
I just got off the phone with Tiffany; she said that Dillon's been having some seizures, and most of the seizures happen without them realizing it. The MRI is going to be an hour and then it will take a couple of hours for the results. Tiffany is planning on being there for at least a week and her parents will probably head home by the weekend or Monday. Keep on praying for the Kuenzis. One blessing so far is that they gave their tracts to a man from Nigeria who claims to be a Christian. This man was reading the tracts and the nurses noticed it, so he gave the nurses the tracts. Pray for opportunites to witness!
Anne
June 19, 2006 4:02pm
Bro. Reeder and I just came back from the hospital in Philadelphia. Please continue to pray for baby Dillon as the doctors search for the problem that is causing these seizures. The MRI came back with good results, making the doctors believe that there is no brain damage at this point. They have also pinpointed the area of the brain where the seizures are occurring. Right now, they are leaning towards a possible chemical imbalance which may be causing the seizures to take place. We will keep you posted as more information becomes available, but please keep praying!
Roland Hammett
June 19, 2006 8:53pm
Rachel and I spent the day in Philadelphia today with Josiah and Tiffany. We got to see Dillon and the doctors narrowed down the problem to three areas. The most likely one (according to the doctor) is that Dillon suffered a brain injury during birth, which is causing the seizures. 72 hours after birth (tonight) should see a gradual decrease in the seizures, if it is really a brain injury. He had a seizure while we were there, but it was the first one in quite some time. The doctors were going to give him a new seizure medicine which should help stop the seizures. Mrs. Kuenzi was a tremendous help in talking with the doctors and was able to expain a lot of the medical terms:D Keep on praying!
Anne
June 20, 2006 12:55pm
We're pleased to announce the birth of our first son, Dillon Josiah Kuenzi born Friday, June 16th 8:10PM 6lb. 10oz 21in. Mom is recovering well and baby Dillon is in stable condition at St. Christopher's hospital for Children in Philadelphia where he was transferred from Allentown. He experienced some birth trauma came out not breathing and he had to be put on the ventilator. He also is having siezures, are they are giving him several medications to get them under control. It seems he is improving a little, so it should just be a matter of time. He will be there for 1-2 weeks or so undergoing tests and treatment if all goes well. I will be commuting to work from there till he comes home.
Dillon means "Faithful" and God has already shown Himself faithful to us in this situation we're going through providing our needs and keeping us looking to him. Thank you so much for your prayer and concern. The love offering was quite unexpected and a real blessing. Thank you.
So many people are going through similar situations. Please pray that we would have specific opportunities to speak to people about Christ and be an encouragement to them in their time of difficulty. 2 pics attached. The first on from birth night and the second with Tiffany is from this morning.
Rejoicing in His Faithfulnes,
Josiah & Tiffany
June 21, 2006 8:52am
Brethren,
Continue praying for Dillon. I spoke with Josiah a few minutes ago and he said that Dillon had a better night last night. They are still waiting on the results of the overnight EEG to see if he had more seizures. At this point, it sounds as if the doctors are not confident they will ever know what is causing the seizures – they are simply trying to get them stopped. Pray for Josiah and Tiffany, that the Lord would minister to and through them at this difficult point in their lives…
Roland Hammett
June 23, 2006 1:33pm
This was an email my sister sent to a email list of Christian ladies: These are the details as I know them.
Dillon was born on Friday night (6/16) at 8:10. He weighed 6 lbs 10 oz. When he was born, he did not start to breath. So they started to give him oxygen right away. My sister (Tiffany) and her husband (Josiah) stayed with Dillon until 5:00 am. Then they went to grab a quick nap back in her room for about an hour. At 5:30, Dillon had a seizure. Later that morning, they transferred him to a children's hospital in Philadelphia, about 1 1/2 hours away. Since being there he has suffered from many more seizures. They have run blood and urine test, a spinal tap, CatScan, MRI of the brain, EEG's and is currently hooked up to a machine for EEG's. All of the test have not found anything. They thought for awhile it might have been cuz he was in distress during birth, the scans of the brain have not shown any signs of being deprived of oxygen. Since yesterday, I believe he has only had one or two seizures. So that is a positive sign. As of now, they are not saying if he will be in the hospital for two more weeks or months. Today, he started to move his legs! That is a good sign. Due to the medication, he has been a bit "lazy." They did not want him to choke on the breathing tubes or try to pull them out. Today he had surgery to insert a pickline into his heart, so they don't have to us the IV's, mostly because he is swollen and they can't get to a vein and the veins are blowing. The doctors said the surgery went well.
They named him Dillon, because they wanted a name that meant something to them and his name means "faithful". They know the Lord will be faithful in this also, but they still appreciate the prayers on their behalf.
Additional update: He had surgery late last night to put a line in his chest for an IV. He was doing well last I heard. He has started to become active. He moved his arm once above his head. That is all I have heard.
Thanks for your prayers,
Victoria
June 25, 2006 12:18am
Church Family,
I stopped in to check on baby Dillon yesterday at the hospital. He has most of the tubes out now and is maintaining his own body temperature. My understanding is that the seizures have stopped, so the next step is to start weaning him off of the anti-seizure meds and monitor him to see if the seizures start again. Pray specifically that he will develop the needed reflex for eating naturally. Right now, he is being fed through a tube. It looks like he will be in the hospital for at least another week, depending on how things go. Continue praying for his recovery and for Josiah and Tiffany during this trial of their faith!
Roland D. Hammett
June 25, 2006 9:43am
This was written Saturday, but did not go through.
Hello,
First I want to thank everyone for all the prayers, it has been amazing to hear how many people are praying for our little boy. Thank you too for all the notes and cards Thursday it was an encouragement to read the verses many of you said were special to you in hard times. The past couple of days have been very good days for Dillon. Thursday's two main blessings were that I was able to hold him for about two hours (previously I have held him for a total of about 5 minutes) and that they started him on food. They are feeding him through a tube right now, but at least he is eating and handling it well. They will have him up to full feedings by the end of today. Yesterday morning when I went down I saw my little boy with no breathing tube in his mouth and dressed in his own clothes. He is able to hold his body temp so they have taken him out of the heat bed and have him in a crib. I was able to hold him pretty much the whole day yesterday! He had up to 3 IVs in him at once because his veins were difficult. Wed. night they took him into OR and put an IV that goes directly into his chest, so he no longer has any of the others that were turning all red. They took him off one seizure med. and Sunday they will lower another. The Neurologist said he will be on the third for about 3 months, but hopefully at low levels. Early next week they will do another EEG to see if he is having more seizures or not. They will also do another MRI next week to see if there is any brain damage (it may not have shown up right away). Please pray for both of these test and that his gag reflex will start to work (he cannot nurse until he has this plus he can swallow at all until it starts to work. At this point they don’t know if it isn’t working because of the sedition or because of damage from the lack of oxygen/seizures). We are also looking forward to him being able to open his eyes soon! Thank you again for all your prayers and support!
Tiffany, Josiah and Dillon Kuenzi
P.S. We have some pictures to send you, but I am unable to on this computer...we will get them out asap! :-)
June 26, 2006 9:15am
I just spoke with Tiffany. She said the EEG for Dillon is scheduled around 1 this afternoon. He seems to be doing ok at this point. Tiffany’s parents left this morning but now the Kuenzi family is here. Also, Josiah was on his way to work when he hydroplaned his car, so now Tiffany is on her way to go get him. Keep praying for the whole family.
Anne
June 27, 2006 6:19pm
Dillon's EEG was moved to tomorrow, they want him completely off of the one drug before they do the EEG. His MRI was today at 9 am but he moved his head while breathing just enough that they had to re-do it at 4pm so we will not know the results until tomorrow. Thank you again for your prayers, the results of this test should tell us how much/if any brain damage was done.
Thank you,
Tiffany Kuenzi
July 3, 2006 11:56am
Dear Church Family,
The doctors say Dillon's diagnosis thus far is "acute hypoxic-ischemia" caused by the asphyxia injury at birth. Basically all this means he suffered lack of oxygen especially to his brain cells and the latest MRI reveals brain damage that appears will mostly affect his motor skills. This is going to be a long term difficulty and only time will tell exactly how it will affect him.
Dillon will be at the hospital indefinitely. He is on and off oxygen and is unable to swallow. Because of this they must suction his oral secretions frequently so he can breathe. He is being fed through a tube and if he doesn't learn to swallow via therapy in the up-coming weeks / months he will have to have a more permanent feeding tube surgically placed directly to his stomach. They have already begun therapy with splints on his hands and wrists.
The doctors have stated 2 options after his stay at the NICU - Dillon can be placed in an intermediate care unit (nursing home for babies) or we can have in home nursing care. One of the NICU nurses has been especially helpful and has assured Tiffany that she can be taught how to properly care for Dillon at home.
Thank you for all your prayer and support at this time. We are accepting this as a long term situation and are leaving it in God's hands. If He chooses to make Dillon better, wonderful! but if not, we know that His way and design is perfect and we can rest in His promise that "My grace is sufficient for thee."
2Cor.12:9 And he said unto me, My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities, that the power of Christ may rest upon me. 10 Therefore I take pleasure in infirmities, in reproaches, in necessities, in persecutions, in distresses for Christ’s sake: for when I am weak, then am I strong.
Depending on Him,Josiah Kuenzi Ps. 18:30
July 9, 2006 9:19pm
Hello,
We just wanted to let you know that the surgeons talked with us tonight. Dillon is rescheduled for surgery tomorrow afternoon. If the ones before run long his will be moved to Tuesday morning. We are still praying if it is God's Will that he will start to swallow before then, and if not that the surgery will go well.
Thank you,
Josiah and Tiffany Kuenzi
July 9, 2006 10:06pm
A letter I sent to all my friends in my address book:
Hello,
I thought I would send out an email and introduce you all to my little son, Dillon Josiah Kuenzi. He was born June 16, 2006 at 8:10 pm. He weighed 6 pounds 10 ounces. There is a lot to tell but I will start at the begining that day. I worked at Sherwin Williams until 2 pm at 3 pm my labor started with contractions 7 minutes apart. By 4:30 I was calling my husband home for work because they were 3 minutes apart. We arrived at the hosptial at 6pm. I was 7 cm dialited so the midwife broke my water 20 minutes later I was fully dialated, after pushing for about an hour he was born at 8:10 - not breathing. Dillon would not breath on his own, they were bagging him in the room for a little bit then rushed him out. We finally got to see him 1.5 hours later. by 3 in the morning they had him off oxygen...he was doing well so at 5 i FINALLY decided to leave his bed side and get some sleep. They woke us up at 6:30 (Sat morning) saying he had a seziure and we would be going down to St. Christopher's hospital for children in Philly. We are still here...he has had several EEG's which showed he was having sezures very frequently that did not make his body move at all. But they are now under control. He has had many other tests as well, but the hardest one on us was the MRI which showed brain damage from the lack of oxygen at birth. They know that most of the damage seems to be in his motor skills but can not tell us what this means for his future. Dillon could be perfectly normal, or he could have many difficulties. They can not tell us why he suffered from lack of oxygen either, the whole pregnancy went very well, my labor was ONLY 5 hours start to finish, I only pushed about an hour, his heart rate was good during the whole labor and even as soon as he was born, i did not have ANY painkillers at all...we have no idea what caused it.) Dillon has not cried at all yet, nor has he swallowed. He is going in tomorrow for surgery to put a feeding tube into his tummy, which will remain there until he can swallow (which may be months until he can) We should finally be able to go home about a week after the tube is in, if all goes well. We are not sure why God has allowed this to happen, but we do know that He DID ALLOW it to happen. I never thought I would have the strength to sit by my son's bed side in the NICU for a month, but God has given the strength right when we needed it. He promises to never leave us, and He hasn't - He has been here with us the whole time. So many people have been praying for him, it is amazing to see! Our church family has lifted us up and helped us in so many ways I will never be able to express it. Some of the neat ways God was at work preparing us for this is that I had a breast pump but was told since it was made by a company that makes formula it may not be good. So Josiah returned it and bought a REALLY good one for REALLY cheap on ebay..I kept telling Josiah that I felt bad having such a nice one since I was only going to use it for when we left the baby with a sitter while we went to dinner - or small things like that. Well I have been using it nonstop since Dillon can't eat but is being tube fed my milk. Praise the Lord! Another way is that Josiah and I wanted a home birth since we were paying for all this out of our own pocket. The midwife wouldn't do a home birth though. We would joke (well half joke but i was really considering it) to not get to the hospital on time and just have the baby at home since everything was going so well. Our baby would have died in our arms if we did that! He really takes care of us!
I am attaching some pictures of our little guy
2Cor.12:9 And he said unto me, My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities, that the power of Christ may rest upon me. 10 Therefore I take pleasure in infirmities, in reproaches, in necessities, in persecutions, in distresses for Christ’s sake: for when I am weak, then am I strong.
~Tiffany Kuenzi~
July 11, 2006 12:25pm
Thank you for praying for Dillon, the surgery went well. Dillon had his eyes open and was moving a lot last night when Josiah and I saw him. The nurse said this morning he started pulling at the breathing tube - he was telling them it was time for it to come out! He is breathing on his own again and was very active this morning (in between naps, of course! :-) ) Thank you again for lifting him as well as us up in prayer.
Tiffany Kuenzi
July 11, 2006 1:16pm
The doctor extabated Dillon (took him off the ventilator) this morning. He will not be able to eat for several days and will only be on IV fluids. Later in the morning he had another visible seizure so they had to increase the meds. Pray for his strength and that God's will would be accomplished in all of this. Thanks.Josiah Kuenzi
July 13, 2006 5:07pm
Hello,
Just wanted to let you know that Dillon has just been put on the EEG again until sometime tomorrow. I think they are just looking to see how he does at this level of the meds before they send him home. He has video this time too since he is moving more. I am allowed to hold him since there is video and he also taught me how to adjust the camera and how to write a note directly onto the EEG recording. He was also just put back under the heat lamp...he was too cold. So we also need to be praying that he can hold his temp. I am not sure how many days he has to be off the heat lamp before they will send him home.
Oh, the head tech who taught Josiah how to read the EEG is the one who set it up, and he said to him it looks MUCH better already. He still seems to have times of very little brain activity and he is not sure if this should still be happening or not but at least these times are a lot shorter..he is having a lot more activity. So we will keep praying.
~Tiffany~
July 15, 2006 1:15pm
The nuerologists read the latest EEG test and saw pretty much what they expected for a baby with brain damage. The neo-natologist who is working with us is optimistic, but has informed us that at this point Dillon is still at risk of developing cerebral palsy or other physical restrictions such as not mentally developing beyond the point of a 2 year old or up-to 5 year old yet still being socially interactive. They don't really know and only time will tell.
The good news is that Dillon is completely breathing on his own and is moving around. He doesn't have anything on his face. Yay! He has developed a gag reflex, but the swallowing involves at least 12 different muscle groups and they don't expect him to be able to swallow anytime soon. He does have the feeding tube in his stomach which could be there for a long time (years or even for life). We know that God is able to perform miracles and we pray his will be done.
Thank you for all of you that have sent notes and spoken words of encouragement. Your strong faith in our God is encouraging to us in this time of uncertainty.
The new goal the doctors are shooting for that Dillon will be able to come home is Friday. No promises, but if he is feeding well through the tube and we are at a competent point of caring for him they will let us go home. The doctors said they like us since "we actually like each other and care about Dillon." They said maybe we should throw some things at them and then they'll think about letting us go home. ;-)
Josiah and Tiffany Kuenzi
July 22, 2006 5:01pmWe are in the car on the way home...with Dillon!!! Praise the Lord! Lord willing we will be in service tomorrow but the doctors do not want him in crowds so we will come in after church starts and leave before it ends. If you would like to see Dillon you can call me and come to our house during the day. We will still be making many trips back to the hospital for appointments, but at least we are going home. Thank you again for all of your prayers! Tiffany Kuenzi
Welcome Baby!!!
Victoria and Jonathan had their little boy, Jeremiah Stanley, this morning at 12:58 AM He is 4 lb 0.005 oz (When you're as tiny as he is every little bit counts!) He is in an oxygen tent in the NICU, but is doing very well! I'm an AUNT!
These are the pictures I have for now!
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