Saturday, October 28, 2006

My mom's birthday was the 26th (Happy Birthday!) so on the 25th when Dillon did very well for the therapist she said it was the best birthday present Dillon could have given her. The Physical Therapist, Deb, said she only felt Dillon trying to lift his head if I was shining a red light on his face. When I turned the light off Deb didn't feel Dillon trying as hard. I took the light to Dillon's right and his eyes quickly caught up with it and then his head even turned a little! We couldn't get him to do it the other way. It is possible the right field of vision is better for him, or that he just didn't feel like doing it again, and it is even possible that he didn't mean to do it - but for now we will take it as good news. Then the Speech Therapist, Karen, said she is pretty sure she is seeing him swallow sometimes!!! We can't be sure though, all we are going on is looking at his throat and seeing if it moves at all. We think we see it! She is going to talk to her friend who does swallow studies to see if in a few weeks if we can get Dillon in so we can be sure one way or the other. What a blessing to have these pieces of good news! God is still working in Dillon's little body. Maybe He will use the decreased medicine to bring about a lot of changes in him. Dillon is now only on Keppra, but it will take about another week for the phen. To be out of his body.
Josiah started his second job on Tuesday. He leaves the house at 8:30am I take him up dinner and get to see him from about 5:30-6:00pm then he comes home at 2:15am. This should only last for 6-9 months, Lord Willing. I miss him very much, but we both know we need for him to do this right now. We need to get out of debt then we should be fine.
We were in special meeting this week with Bro. Milton Martin. He spoke a lot about the churches in South America that are a product from his ministry. There are over 300 churches that have been started out of his work there. Praise God! These churches were always self-supporting and reproducing! Thursday night he spoke on truly believing in prayer. Do we? Do you? Do you really believe that if you gather together and pray for the church service or for a person salvation that God will bring it to pass? I think we all are lacking in this area. Bro Martin also pointed out how so often we pray for physical needs and not spiritual. Will you pray for the health and even life of a person and forget to pray for salvation? I know I do. I pray nonstop for Dillon's health needs, but I have given up on believing Dillon will ever be capable of making the decision to get saved. What if I am wrong - what if God heals him and he one day needs to make that decision...Will I wonder if my lack of prayer for him played a part in him dying and going to Hell? What about your family, do you pray when they are sick and forget to pray for soul? Or do we remember, but have such little faith that God will save them that it seems like a waste of time to pray?
Thursday night I got home from church and went downstairs to pump for Dillon, eat ice cream then get a shower and give Dillon a bath. Wow, did my night change! I put Dillon down on my bed and had his feeding tube in my mouth as he was just finishing his meal. The whole Mic Key button popped right out of his tummy! I was on speaker phone with my mom when it happened. I started to panic, I knew this could happen but it was the first time that it did and I was so scared. I didn't know if I had hurt him or not, I was shaking so bad that after four attempts to put it back in (like the doctors had told me to do) I just gathered him up as quickly as I could, tossed him in the car, put my four-ways on and drove as fast as I could to the ER. I went to a place that is much cheaper and only .2 miles further than the main hospital and they said they couldn't do it so I rushed him into the major hospital's ER, Lehigh Valley Hospital. I sat there for about 10 minutes until the nurse called me back to check his temperature, blood pressure, etc. She asked about his breathing being so heavy, this is normal for him though. She also asked what his blood oxygen normally is, I told her 92-100 it was 92-93 so it was good. I showed her the discharge papers from St. Chris when she asked about his medical history. I even showed her that I had a new Mic Key button for them already. I told her everything! I even told her his diagnosis - every detail I could. I asked how long it will take before it starts to close up - she told me it would be hours before that would happen. So after being there an hour I went up and asked how much longer, they basically ignored me. At an hour and a half I asked again. They said it is based on your condition because I told them I saw 6 people come in after him and go back before him. (I couldn't even tell what was wrong with 4 of them - they couldn't have been that sick. There was no blood, no crying, no moaning, no limping, no holding a certain body part, NOTHING!) I told them that he is a baby and needs to be seen, they once again blew me off. I finally asked the nurse when he was going to be seen that he needs to eat again soon. (I know he will be okay for a while, but I am not dumb I know once you get to go back it will still be another 3 hours before you go home!) She said, "When did he eat last?" "8pm" :Oh, he will be fine!" She was so rude and then she walked away. I started to cry, I was getting so angry! They weren't helping my son, I knew he needed the tube put back in soon and they didn't care. I called my husband again, this time in tears. His second job is about 5 minutes from there so he came right over and FINALLY they took him back. It is crazy that I have to get to the point of tears for them to help my 4 months old baby! While we waited for the doctor the insurance lady came in - so they want to be sure they know HOW they are going to be paid before they every DO anything to be paid for! Next time I am refusing to give them information until they help him. Once the doctor came in he looked at it and I said, "It is starting to close already, isn't it?" He said "Yes." I about lost it! My fist were as tight as I could be and my jaw being clenched shut was the only thing that kept me from yelling. They said it was too tight, they couldn't get the button in again. They told us they were going to have to get the surgeon to look at him, he may need surgery to put it in again! As you can imagine I am doing everything I can to not lose my testimony and go choke that nurse! Finally they put a smaller tube in that would work as a temporary feeding tube until I could take him to St. Chris the next day. Can you believe that a world known hospital such as Lehigh Valley could not take the time and be bothered enough to have a doctor come help Dillon so they took the easy way out and let me take him to Philly the next day. I am filing a written complaint against the nurse on Monday. She lied to me and it almost cost my son surgery. As you read in a old post, Faith died from a feeding tube surgery and this dumb nurse almost made Dillon have to go through it again. I took him to St. Chris right away the next day, they don't take patience in surgery clinic on Fridays but they were more than happy to help him and get it taken care of right away. It hurt Dillon when they pushed it in again ("thank you" to nurse Olga for that one!). They then wanted to Xray him to be sure it was in right, but my insurance is messed up right now, so they took the time to call and make sure they would pay for it. They care! They really care about Dillon and want him to be safe. I have even more appreciation for St. Christopher's now.
What a week - I plan to enjoy the weekend - hope you all do the same!

Friday, October 13, 2006

To do BI or not to do BI...That is the question

As you can tell by the post I am debating over Bible Institute. I have a test and paper due Monday. I have been working on the paper - but you know how you get to a point where writer's block sets in? I at that point right now so I decided to write a quick post instead. I know so many people are praying and I wanted to give you some good news and say thank you for praying. Dillon's vision therapist was here yesterday, she has been in this field for 23 years. She said she is pretty sure she saw him looking at her lights several times!! Praise the Lord! I do understand, and want to make you do too, this is not a "for sure" thing it is more her gut feeling, but she has been doing this for so long I tend to think she knows what she is looking for.

I want to tell my husband - thank you for never giving up on God or on Dillon (or me for that matter). I have been the one saying "He is blind! We need to just accept it." all along and Josiah is the one saying that he believes Dillon will be able to see, he keeps reminding me to just give him some time to recover. I hear the therapist's encouraging words and it helps me to have faith that God is going to work in Dillon's eyes, but Josiah has had the faith without any human signs. It reminds me of unbelieving Thomas (many people call him doubting but he didn't doubt he was unbelieving). The other disciples believed without any proof yet Thomas refused to believe Christ was alive again until he saw and touched Jesus. Am I "unbelieving Tiffany" as he was "unbelieving Thomas"? Do I require God to give me a physical sign before I will have faith in Him? I sure hope not.

Heb 11:1 Now faith is the substance of things hoped for, the evidence of things not seen.

Wednesday, October 11, 2006


Dillon's ear appointment today showed that his left ear is worse than the right. He is severe to profound in the left. This means that down the road he may be able to get the implants. I learned that they will only ever implant one ear anyways. This is due to the fact that they destroy the little tiny hairs in the ear when they place the parts inside it which totally removes any hearing that the person did have in that ear. Therefore they will only do this on one ear in case something happens and the implant doesn't work right or illness causes it to no longer work etc. At least then they would not leave the person without any hearing in both ears. This being said Josiah and I may have to decide if we want to get it in the left ear later on, it is our decision. It would be surgery on his head, which of course always has dangers, and the insurance may not pay for all of it because it is considered elective. My opinion, and this is without having seen my husband to talk it over with him, is that I would want to wait to make sure he could understand language before we put him under the knife to improve the hearing from what hearing aids can give him. But this is not something that needs to be worried about for a while.
I spoke with his neurologist today. He gave him permission for Dillon to undergo the Vital Stim therapy but he would prefer I wait to see if the problem is being caused by the medicine. Dillon has been so tired that he doesn't even lift his head anymore due to the full doses of two medicine as we are in the process of switching over. Therefore, he told me to go ahead and move things along faster. Instead of waiting another week and a half to start lowing the one medicine I can start lowering it tonight. This means Dillon would be off of it Oct 25. If he does not have seizures then everything is good, if he does he will have to go back on it. This medicine could be causing a lot of the issues that we see in Dillon - and it is my prayer that it is in fact the cause. I say this because if it is the cause we will soon be seeing improvements. The eye doctor, yesterday, told me there is no improvement and if anything Dillon is starting to get a wandering eye. His right eye is moving upwards when the left is not. This, too, could be from the medicine. To sum it up - the medicine could be causing all, none, or any combination of: unable to swallow, not sucking, blindness, not having good control of his head, not crying (I believe but don't quote me on this one), wandering eye, his extreme tiredness. The eye doctor also told me of a Mom, much like myself. She is young, loves her baby, usually smiling, etc. Her daughter was in six times (about 2.5-3 months in between each visit) and every time she came is she was saying "I know she is better, I just know it!" and the doctor and nurse said it broke their heart to tell her nothing had changed each time and she left crying. This week she came in and her daughter was a different baby! She was smiling and laughing reaching for toys and acting like a normal baby. Her vision suddenly came! I am trying to find out if they will give my contact info to this mom so I can find out what toys/stimulus she gave her daughter.

Please PRAY SPECIFICALLY for these:
1. Dillon would not have any seizures as we take him off this one medicine.
2. The medicine would be the cause of: his vision problems, his sucking problem, his swallowing, his energy, his head control, and even his ears (I don't know if this one is medically possible but with God it is!)
3. His ears would improve enough that we won't even need to decide about implants or not.

My parents church in Ohio was praying (and still is...THANK YOU!) when we were in the NICU and they said when we asked for them to pray specifically for Dillon issues they saw God answering their prayer request much more than when they were just praying in general for him. I think this is because we are looking at it different if we pray specifically, but I also think God wants us to go to Him and be very specific. God doesn't want us to say "God, please save everyone in the world, bless all our missionaries, and heal the sick." He wants the names of the people who are on our heart, the ones that we are trying to win. He wants to hear us ask for the needs that the missionaries have asked us to pray for, and he wants us to go to Him with our health needs and ask Him to work a miracle in the specific ways. God's answer may be no, but at least He gives us liberty to go to Him with boldness and ask.
Thank you for all your prayers. I have been told that people read my blog that don't usually comment...I would appreciate if you could just comment "hi!" and leave your name (even a first name and something that I would know who you are by it) so that I know who is reading. It amazes me how many people are praying for my son, my husband, and myself. However, to keep with what I have just been saying, I would like to thank God specifically for each person who reads this and prays for us.

Friday, October 06, 2006

Pumpkin Patch & Hearing Aids

Okay - I know it is a weird combination but those are the events of our life this week. First, the pumpkin patch. Dillon and I went to our first M&M (Mommy and Me) activity on Tuesday which was to a pumpkin patch. We rode on a hayride then Dillon picked his pumpkin from the field - can you believe he picked one that is bigger than him! Of course he let Mommy carry it so he didn't mind. :-D The rest of the pictures can be found at

Then on Wed. I took him for a heaing test. I didn't think I would be given the results but she did tell me! He is moderately severe to severe hearing impaired. This means that he can hear a lawn mower or an air plane if he is next to them but he cannot hear in the vocal range. His right ear is a little better than the left although she didn't get to finish the test on the left becuase he wouldn't stay asleep (of course the one time I want him to sleep.....!!) Anyways, we will go back next wed and see if his congestion is adding to the hearing loss at all. It MAY be part of the problem and thus he MAY actually only me moderate hearing loss - we will see. This is good news in a way though. Of course I do not want my son to have to wear hearing aids for the rest of his life - it is IS a blessing that hearing aids will help to hear almost as well as we do! She said his hearing could get worse, but it could get better too. It is VERY rare that it would improve so well that he wouldn't need them at all - but we do have a Great God that can fix Dillon's ears if he wants. And even if he doesn't Dillon should be able to hear with the hearing aids. Until he is fully grown (in his 20's) he will have to wear the kind that go over the ear so we get to pick the color. Daddy wants to go with the clear ones - so clear it is! When he is a little bigger we can get colored parts that go in his ear but right now he will be out growing them every months so he just gets the boring skin tones for now. That is about all with his ears. The vision therapist came yesterday, which was her first time seeing him awake, but she THOUGHT he might have looked at her christmas lights twice. There is no way to tell for sure it was just her "gut feeling" :)
This link is a picture of the hearing aids Dillon will have, except we will probably get him the clear ones. (Sorry, I can't get the picture to upload into my blog!)

Monday, October 02, 2006


Psalm 116

1 I love the LORD, because he hath heard my voice and my supplications.
2 Because he hath inclined his ear unto me, therefore will I call upon him as long as I live.
3 The sorrows of death compassed me, and the pains of hell gat hold upon me: I found trouble and sorrow.
4 Then called I upon the name of the LORD; O LORD, I beseech thee, deliver my soul.
5 Gracious is the LORD, and righteous; yea, our God is merciful.
6 The LORD preserveth the simple: I was brought low, and he helped me.
7 Return unto thy rest, O my soul; for the LORD hath dealt bountifully with thee.
8 For thou hast delivered my soul from death, mine eyes from tears, and my feet from falling.
9 I will walk before the LORD in the land of the living.
10 I believed, therefore have I spoken: I was greatly afflicted:
11 I said in my haste, All men are liars.
12 What shall I render unto the LORD for all his benefits toward me?
13 I will take the cup of salvation, and call upon the name of the LORD.
14 I will pay my vows unto the LORD now in the presence of all his people.
15 Precious in the sight of the LORD is the death of his saints.
16 O LORD, truly I am thy servant; I am thy servant, and the son of thine handmaid: thou hast loosed my bonds.
17 I will offer to thee the sacrifice of thanksgiving, and will call upon the name of the LORD.
18 I will pay my vows unto the LORD now in the presence of all his people,
19 In the courts of the LORD’S house, in the midst of thee, O Jerusalem. Praise ye the LORD.
Philiipians - my favorite book of the Bible
Do all things without murmurins and disputings:
But what things were gain to me, those I counted loss for Christ.
Brethern, I count not myself to have apprehended: but this one thing I do, forgetting those things which are behind, and reaching fforth unto those things which are before.
Rejoice in the Lord alway: and again I say, Rejoice.
Be careful in nothing; but in everything by prayer and supplication with thanksgiving let your request be made known unto God.
Not that I speak in respect of want: for I have learned, in whatsoever state I am, therewith to be content.
I can do all things through Christ which strengtheneth me.
But my God shall supply all your need according to his riches in glory by Christ Jesus.
Ephesians 3:20-21
Now unto him that is able to do exceeding abundantly above all that we ask or think, accourding to the power that worketh in us, Unto him be glory in the church by Christ Jesus throughout all ages, world without end. Amen.
John 9:1-3, 11

And as Jesus passed by, he saw a man which was blind from his birth. And his disciples asked him, saying, Master, who did sin, this man, or his parents, that he was born blind? Jesus answered, Neither hath this man sinned, nor his parents: but that the works of God should be made manifest in him.
vs 11
He answered and said, A man that is called Jesus made clay, and anointed mine eyes, and said unto me, Go to the pool of Siloam, and wash: and I went and washed, and I received sight.