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!

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.

Specifically

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.

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 http://www.flickr.com/photos/70543163@N00/260054985/


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!) http://www.aidright.com/ProdImages/sumo.jpg

Verses

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

2:14

Do all things without murmurins and disputings:

3:7

But what things were gain to me, those I counted loss for Christ.

3:13

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.

4:4

Rejoice in the Lord alway: and again I say, Rejoice.

4:6

Be careful in nothing; but in everything by prayer and supplication with thanksgiving let your request be made known unto God.

4:11

Not that I speak in respect of want: for I have learned, in whatsoever state I am, therewith to be content.

4:13

I can do all things through Christ which strengtheneth me.

4:19

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.

Should We Hope?

Last night before church Dillon was laying on the living room floor in a prop I made him out of blankets. He was sitting up a little with the blanket surrounding him completely to keep him in place. I walked into the living room, which was fairly dark, to get Dillon ready for church. I turned on the light and as soon as I did Dillon started moving his arms, legs, and head. Did he see the light? If so, why doesn't he always react to it? This leads me to wonder if I should have hope or not.

Pr 13:12 Hope deferred maketh the heart sick: but when the desire cometh, it is a tree of life

How do I know when my hope is going to make my heart sick and when to have hope because it will become a tree of life? It is something I decide or am I supposed to hope until God tells me otherwise? Is God telling me to stop hoping by my true belief that he is going to be blind? Or am I, as my husband says, just being pessimistic? Am I giving up on God and Dillon to say that I don't think he will ever see or am I just preparing myself in case that is reality?

If anyone has gone through a hard situation like this where you didn't know if you should have hope or not, please comment and tell me if you decided to keeping hoping or not and how it turned out. I know every situation is different and just because God answered you one way doesn't mean it will be the same for me - but I am just interested to see how God worked in other people's lives when they were at a point of not even knowing if they should have hope! If you do not want it posted but are willing to share your story with me my email is hediedforus1015@aol.com Thank you!

Remembering Faith

The first night we spent at St. Christopher's was hard on us both, of course. We were given the "dorms" to sleep in. This meant I had to sleep in a room with up to 3 other women and Si had to sleep in a room with other men. Well, at the time we still hadn't celebrated our first wedding anniversary and had never been apart for the night. Do you think after just giving birth to our baby and not sleeping that first night at all because of him problems that I was really going to be able to sleep away from my husband in another room? No! I needed those nights more than ever. So - Josiah decided that I was going to sleep in the room with him. There was stuff in the room that showed someone else was staying there but no one showed up. So I did, we put the little mattress things on the floor so we could sleep beside each other. The next night, however, we did the same thing and this man came into the room. I felt very bad about being in there and so Si asked him if it was okay. He said it was fine with him. We found out that his wife was still at home because of a C-section. This started a friendship between David, his wife Ada, their little girl Faith and us. We enjoyed the fact that God brought us together and their little girl’s name is Faith and we chose the name Dillon because it means “faithful”. David was a refugee from Liberia and his wife was from another African country. They are both saved and love the Lord. They had tried to have a baby for ten years - and then they found out they were pregnant! During the pregnancy the Doctors saw that Faith had water on her brain and wanted David and Ada to kill her. They could not kill the little girl they prayed for ten years to have, though. Faith was born about a week before Dillon with the water so compressed that she had a brain stem but basically no brain. She was a beautiful little girl who moved her arms and legs and eyes. We were told that all her movements were neurological – in other words she was not purposefully moving anything. Faith went through many tests and procedures but to make a long story a little shorter she was still in the NICU when we left. At one point the doctors wanted them to take her off the ventilator to die. Faith was trying to breath during the day, it was only at night that she let the machine do all the work. Again, her parents could not play God and take her off. They were praying for a miracle and if it never came they were at least going to let God decide when to take her home. For the last couple weeks we were there Faith and Dillon were so close together I sat with Dillon and watched little Faith at the same time. I received an email last night from my mother-in-law (who was still emailing David and Ada – I didn’t know they had the email address other wise I would have been emailing them as well). Faith had the same surgery Dillon had – the feeding tube surgery. However, I guess there were complications from it. David and Ada spent three days holding little Faith before she died in their arms. August 10, 2006 Faith went home to be with the Lord. I told Dillon his friend from the NICU is waiting with Jesus and will see him, and us, one day. I want to write David and Ada and ask them for a picture of Faith to keep, if I get it I will post it so that everyone can see how beautiful she was and remember too pray for her parents.

Road Trip!

Josiah's parents need him to set up their computer and since he is interviewing with hopes of starting a second job - this weekend is our only chance to go. So at 3pm today - we are headed off for WV. Lord Willing, we will leave after morning church and get back in time for service at our church Sunday evening.
Dillon's doctor said we do not need to do another MRI right now, he would like to do it when Dillon is around nine months old though. He is also going to switch Dillon to another medicine called Keppar. It will not be until November 10th that Dillon is completely off of the Phenobarbotol (sp?) due to the fact that we have to slowly introduce the Keppar and then slowly remove the Phenobarb. This other medicine does not have the side effects as the Phenobarb, the extreme sleepiness or inability to learn. Please pray Dillon's body handles the change well and that we will successfully be able to change him over to the new medicine. I am really praying that we will see more progress in Dillon as he is starts to be more awake! Have a good weekend!

Off to School

Not too much has been happening. Dillon has been sick since Friday with a cold. I think he is finally doing better. He didn't sleep ALL day long today and was actually picking his head up and oushing with his arms and legs, which he hasn't done since Friday. I think he is getting better finally. Other than that I am just continuing my search for a home based business...that isn't going as well as I would like.
Well I am off to BI (Bible Institute) which is Monday nights for 3 hours. Right now it is one class instead of two, so 3 hours of Pauline Epistles with Pastor Shorter. Have a good evening everyone!

Ketchup (Sorry no fries with it)

It has been a while since I wrote last, for all those looking for Dillon updates – I apologize. I also apologize for how long this blog is going to be, but it is the only way to catch up on all that has happened. Over Labor Day, Josiah and I went to Ohio to see my family. My grandfather has cancer again and he is turning 70, so we all wanted to get together to see him. The three of us were there, my grandparents, my parents (and their dog), my sister and her husband (and their dog), my aunt and uncle and their three kids, and my uncle and aunt and their five kids. The only ones who weren’t there are my uncle and aunt and their son because they are in Italy (Army). Needless to say, Dillon never lacked for cuddles!

Saturday night I put Dillon to sleep on his tummy and around 6am the apnea alarm went off. He had put his face straight down in the bassinette. This is the only time the alarm has sounded. Praise the Lord we had the machine because that had nothing to do with his health problems that was just being a normal baby. Can you imagine what our Sunday would have been like if we didn’t have the machine?

Sunday morning when we got to Church, to the church my parents go to and I used to go to, my mom and dad had bought Dillon a little suit so I went in to change him. Daddy was surprised when I brought Dillon out in black socks, black dress pants, a white dress shirt, a vest and a tie! (Yes, I will be putting pictures on eventually!) Service was great, and it was so nice to see everyone again. I saw my friend who has a baby 9 days younger than Dillon. It was a little hard because he is a lot more advanced than I thought he was (which means more advanced than Dillon) but it was not as hard as I thought it would be.

The rest of the trip was wonderful, I enjoyed seeing my sister and the rest of the family. I also saw a friend from high school and a teacher that I had all four years of high school, and a teacher my sister and I both had in Middle school. Josiah and I took Dillon in the hotel's pool with us and he seemed to really like it. He started talking up a strom and didn't have his mad face on so we think he enjoyed it! The last night there I forgot to give Dillon his meds at 2am and couldn’t figure out why he woke me up every single hour and every time he was in the bassinette playing! On the way home he woke up about 5:30pm and stayed awake until we got home at 7pm and then played HARD for about an hour and a half. He was scooting and lifting his head, pushing up with his feet and just kept going and going. I wonder if it was due to the fact that he missed a dose of medicine.

Dillon had an ear appointment on Thursday. All they told me was that it is not water in the ears nor is it ear infections. Therefore it is hearing loss. We have to go for yet another test to see how bad it is. I have done some research and it seems like this type of hearing loss can be helped to some degree by hearing aids or implants. We will see. The doctor made me very upset by acting like there was no rush whatsoever in finding out if Dillon has any hearing at all. It would be different if it were HIS son that that could be both blind and deaf – I am pretty sure he would see it as a more urgent matter.

On Friday the mom of a friend of mine from church drove Dillon and I to his appointment in Philly. She was so sweet, not only did she drive and refuse money for gas, but she bought lunch and coffee and then after the appointment milk shakes! It was a good time of fellowshipping with her. The appointment was a developmental check up thing. BORING! After talking with the doctor I have come to the conclusion – I am done with doctors! I am not going to any more appointments than absolutely necessary. They leave me discouraged for days afterwards where all I can do is look at my son and start crying. She told me that MRI’s are not convulsive. You can have an normal MRI and not be “normal” and vise versa. So – why am I about to put Dillon through yet another MRI this Thursday? Why am I going to let them put a tube down his throat again if he isn’t already sleeping for it? Why do all this to find out nothing has changed and just to have my hopes up? Why do it because if it does show improvements it doesn’t change any of the therapy we are doing with him? Good questions. I am waiting for the neurologist to return my call to explain to me why I am. (I am also asking if we can switch Dillon to a less drowsy medicine. Plus someone told my mom a blood test will tell us if he has CP or not – I am finding out if this is true.) Okay, back to the appointment on Friday – they told me Dillon’s muscle tone is weak so I happily told them how he pushes up on me and stands up etc. The os-so-nice doctor then told me, “Oh, well he is probably in the switch over state developing the CP.” There is no winning with these people! First he is too lose and then he is too tight. I give up! Not on Dillon or on believing God can fix him, but on the doctors! Truth be told, I have battled with getting mad at God – but it only seems to happen after I hear all the woes from the doctors – that is why I am finished with them as much as possible. The only helpful thing the told we was to get an early intervention vision therapist to come to the house, just in case Dillon can see. So I am waiting to hear back from the coordinator on who is going to come.

I found a doctor on the internet and to make a long story short (because this blog is long enough already!) There is a place about 5 miles from my house that does Vital Stim therapy. It is using electric shock treatments to help swallow. It sounds mean but it is apparently painless. There are amazing statistics from this therapy. I have a call into them as well. The website – if you want to read more about it is – www.VitalStim.com

This pretty much feels you in on what has been going on with Dillon and I. Hopefully I will be able to keep posting more often so they aren’t this long. Again, I am sorry for the length of this post. I will try to put pictures on, but I will not have the internet tomorrow so not sure when I will be able to.

Thank you

Thank you to everyone who left comments, your notes of encouragement mean a lot to me. I am feeling much better today. I guess maybe it is going to be like this for a while, but last night my husband spent time in God's Word with me and prayed for me. I really think all these things did help my mood to be much brighter today. Thank you for praying - I guess in many ways I need your prayers as much as Dillon does.
I didn't want to get my hopes up - or anyone else's for that matter - but last night Josiah was holding Dillon in a "football" hold (his head in Si's hand and his legs near Si's elbow). Josiah stood on our bed because we have very dark pipes as our ceiling so I decorated with white lights and by standing on the bed Dillon was right near them. Si would move his arm all the way to the right and Dillon would turn his head to the left, Si would go all the way to the left and Dillon's head move to the right. Si is pretty sure he was tracking the lights! I saw Dillon doing it and would tend to agree with Si, I am just being a pessimist because it is easier than getting my hopes up only to have them be crashed - again.
The Speech therapist saw him today for the first time and told me how to work with him a little better. She has never worked with a child who couldn't swallow at all though and has only worked with 2 or 3 babies this young. She seems like she is going to be okay anyways, she said she is going to do research to make sure he is old enough for her to try something called cold therapy. I guess that is where we would dip a Q-Tip in sterile water and freeze it. Then we would somehow put it on the back of his throat. She said she thought she saw little movements in his neck - which would mean swallowing - but couldn't be sure at this point. We mainly have to work with him to strengthen his mouth muscles.
Most of today was spent making phone call after phone for doctors, and bills, and Social Security stuff, etc. But it was a good day. Oh yeah, the neurologist said to have another MRI done in the next week or two. If it were just an injury his brain should be "normalized" by now, if it isn't - well we will cross that bridge when it comes (those were his words, not mine.) I was under the impression that it is permanent damage - but I guess it may not be. The last MRI was done when he was 11 days old, now that he is 10 weeks and by then 12 weeks they should be able to tell if his brain is "fixing" itself or not. This is a blessing! I am praying that the MRI will show improvements - if not a PERFECT brain scan...Hey - God can do it, right?

CP

My husband copied my blog into word so that I wouldn't lose it while I was working on it today. I posted the blog finally and then X out word without saving and I guess blogger messed up and didn't publish my post so now I have to re-write it. :-(

I didn't mean to assume everyone knows what I meant when I said CP (the truth is that I couldn't spell it correctly so I just wrote it that way!) CP is cerebral palsy. Thank you Liz for your encouraging notes and personal experiences. I did not know, until our time in the NICU, that cerebral palsy has different intensity levels. Nor did I know it was something that could "develop" I thought it was a one time injury and you either had it or didn't. I guess I have learned a lot more about medical things than I ever thought I would! Liz - How did Ezzy's CP develop? Was is gradual? I know the doctors can't tell me for sure what is going to happen as far as if he is going to have it and how bad if he is. They said by one year of age if it hasn't developed it won't. I am looking forward to the day Dillon turns 1 because I want all this to be figured out.

The verse from the song I posted yesterday said "Life's trials will seem so small" well up until this trial all my other ones were so small! This is the first one that I cannot see as "small" maybe one day it really will be. But for now it is an all consuming trial that is draining me of all energy and strength. It must be God carrying me through each day because I have no strength left, all I can do all day is cry. When I am with other people I put on the smile and the laugh that says "I'm okay" but recently that is all it is...A put on. Only God knows how much my heart is hurting, how depressed I have been, how much I want to give up, and how much He has to remind me that I can't! My Aunt just sent me an email I am going to put it in here instead of trying to summarize it:

We have a little girl in our church at the moment. Presently she is a foster child to a family in our Church who go on regular missions trips to Romania. They met baby Maria at a children's hospital, she was abandoned by her parents because she was born with a cleft pallet. Her parents didn't want her because she wasn't perfect. On their return trip they found her in an orphanage and were able to take her to the US for medical treatment. They are now trying to adopt her or she will have to return to the orphanage. I say all of this to tell you that God could have put little Dillon in any situation, he could have been born in a foreign country and spent his life in an orphanage with no one to love him or cuddle him or hold him, yet God cared so much for him and had so much faith in You and Josiah that he put Dillon in your family. Not by mistake, but for such greater purposes. I can not imagine how hard, and exhausting all of this must be to you, but keep on trusting Him and His strength to help you through each day. When you are at your lowest remember there are many people upholding you in prayer. We love you and will see you soon.

I think that is just what I needed to hear. I keep asking how is it that if I were to stand by and willing, knowingly let my child touch the hot stove or play with a knife and let them get hurt, I would be considered a bad mother. I would be charged with child abuse and/or child neglect, but when God stood by and allowed this to happen to Dillon I am supposed to rejoice (2 Cor 12:9-10) and draw closer to Him. It makes no sense to me at all. This email helps me in a tiny way - to know that God did not let my sweet little Dillon be born to parents who would abandoned him. He can't see me, he can't hear me, he may never be able to speak to me, but he can be cuddled by me. It's all I can do for him.

Another day of discouraging news.

Another day of discouraging news. The neurologist - an optistmistic one at that - said today that Dillon is showing the early signs of CP, because of this Dillon has a 90% chance of developing CP. So only 10% chance that he won't, but that is 10% without God's healing hand being taken into consideration. I figure he must have at least a 50% chance of not developing it when you account for how many people are praying and asking God to make him better! We will know by one year of age if Dillon is going to have it or not. If by that time the CP has not developed they will comfortable saying it will not. For the next year, this will be added to my list of specific prayer requests on Dillon's behalf. There are so many specific prayer needs I honestly do not know where to start and which ones are most important, but God knows. I believe if I make it a point to pray specifically for all of Dillon's needs God will hear and answer. Ro 8:26 Likewise the Spirit also helpeth our infirmities: for we know not what we should pray for as we ought: but the Spirit itself maketh intercession for us with groanings which cannot be uttered.
Yesterday in Sunday School we were going over James 5, and there is a verse in there that talks about Job. Job suffered so much in his life and yet remained faithful to God. We were talking about a timeline, the Bible is not too clear on how long the span was that Satan was trying Job. It may have only been a matter of days and in that time Job lost all his animals, all of his children and their spouses, his wife, his health, etc.
Another blessing from church yesterday was the song we sang in the morning:

When We See Christ

Ofttimes the day seems long, our trails hard to bear,

We're tempted to complain, to mummur and despair;

But Christ will soon appear to catch His Bride away,

All tears forever overin God's eternal day.

It will be worth it all whe we see Jesus,

Life's trials will seem so small when we see Christ;

One glimpse of His dear face all sorrow will erase,

So bravely run the race till we see Christ.

Sometimes the sky looks dark with not a ray of light,

We're tossed and driven on, no human help in sight;

But there is one in heav'n who knows our deepest care,

Let Jesus solve your problem- just go to Him in pray'r.

It will be worth it all whe we see Jesus,
Life's trials will seem so small when we see Christ;
One glimpse of His dear face all sorrow will erase,
So bravely run the race till we see Christ.

Life's day will soon be o'er, all storms forever past,

We'll cross the great divide to glory, safe at last;

We'll share the joys of heav'n- a harp, a home, a crown,

The tempter will be banished, we'll lay our burden down.

It will be worth it all whe we see Jesus,
Life's trials will seem so small when we see Christ;
One glimpse of His dear face all sorrow will erase,
So bravely run the race till we see Christ.

Anniversary Pictures

I finally put our anniversary pictures on the
computer....




This was taken outside of Sight and Sound after we saw Ruth.

Really! We did actaully PLAY a game! and I won....by only one ball - but it only takes one! ;-D

Sitting outside of the resturant after we ate.

















Cutting the wedding cake from a year ago. Josiah was very excited - he was hungry for cake and thought it was going to taste wonderful! (I tried to warn him....)

Eating some of our wedding cake...Yea! It is FINALLY out of my freezer! And Josiah did NOT like it at all! ;-D

Wow, it is amazing that we can have a family picture on our first anniversary. We thank the Lord for our little boy!

Not Blind?

Well - we are not positive that Dillon is seeing but he left us with much more hope. The Optic nerve isn't perfect but he has seen much worse and the child could still see. He said if Dillon doesn't see it will be because of the brain damage - which we cannot test until about 4 months - not because of the nerve. He said he won't tell me Dillon isn't seeing now because he can't be sure and to stimulate Dillon as much as I can when he is awake. (The other doctor told me there was no point in stimulating). He also said he won't tell me Dillon will never see because if he did - he believes he would be wrong. When he left the nurse said sometimes we have to tell parents "we're sorry but we don't think your child will see, we cant be sure, but we don't think" but she said the doctors tone of voice was not saying that at all!
So - Dillon is definitely behind in seeing and he may or may not see in the future but he is very confident he will! Thank you for your prayers and please continue to pray!! We have another appointment in October.

And so the question I have - that will always remain unanswered - is... Was the first doctor exaggerating - or did God work a miracle in Dillon's eyes between Tuesday and Friday? If the latter is true, I know it is due to the constant prayer of God's people. How can I say thank you enough? Praise God for He is a God who hears our cries and answers! He never left us alone and in fact I went into the appointment truly thinking I was going to be told he is blind by a second doctor. I am not sure if it was me preparing myself for the worst or if it was God asking me what I was going to do? I don't know how I handled it - if God would be pleased or not - but I do know that as hard as it was I was already thinking of things such as I am going to have to learn to be VERY organized, I am going to go online and find out where I can learn brawl, etc. Praise God for the hope we have been given. If the doctors have hope, how much more hope can I have when I know the Great Physician who loves my little boy more than I do.
It is late and I have to go now, but I want to write a few of the passages I have been reading in Psalms - maybe I can find time to do it tomorrow...

Blind?

Tuesday a doctor in Philly sent me away with a box is tissues saying "well I haven't told you anything you didn't already suspect." But he did, he told me Dillon can't even see the difference between light and dark. Tuesday was such a hard day my sister in law (who was with me at the appointment) and I cried the whole way home - our son is blind! My mom was telling a friend of mine about it and her son is 9 day younger than my son. He will only look at you for about two seconds at a time, he will not track things yet, and bright lights don't bother him. These are the reasons, though, that the doctor said he is blind. He also said the nerves were pale which indicates they suffered from lack of oxygen. However there is a chance the nerves could repair themselves. My husband researched it online and my friend's doctor confirm though, that you cannot tell this early and that only 10% of babies would pass the test Dillon was given. I asked my family doctor to send me to someone else for a second opinion - he sent me to the man a little girl in my church sees because of her eye problem. I quickly told them about Dillon and asked when they would be able to test him, the lady put me on hold and came back with "Can you bring in him tomorrow at 1pm?" Wow, I asked several times if it is too early or if they can tell and they told me they will be able to tell if he is blind or not. This time I am going into the exam much more informed and will not so ignorantly believe everything they tell me. Please be praying as his appointment is at 1 pm today. I will try to get an update on here ASAP, but no promises as to if that will be today or not. Thank you for your prayers!!

Happy Anniversary!

Happy Anniversary!

First lets start back a few days: Saturday the 12th, my husband’s father, one brother, and sister came into town. Josiah took Monday off to spend the day with them. Everyone, except Dillon and I, went to play with Josiah’s remote control cars in the parking lot of a near by school. After they were done we went to a local shooting range and practice with my husband’s revolver. I think I shot 4 out of 12. Not too good, but considering I have only shot it on one previous occasion, I would say not too bad either. Then in the evening we, everyone except Ezra, went to a good by fellowship for a family who has been in this church for approximately 15 years. We had a good time walking around the park and just relaxing. When I went to say good bye it was hard because Kim is the only other mother in our church who understands what I am facing with Dillon. I talked about her and her autistic before in a previous blog. The following week Hannah and I kept very busy going to doctor appointments for Dillon, thus the reason I have not been on the computer lately.

Sunday was our first wedding anniversary so my husband planned a day for us on Saturday. We took Dillon to the babysitter – a very sweet lady in our church who was willing to learn how to care for Dillon even though she has a two year old son and is expecting another baby. Her son LOVES Dillon to pieces. He wanted to take Dillon out of the carrier as soon as I got there but his mommy told him she had to help. He was quite confused though when I picked Dillon up and said, “But Mrs. Koonzi picks him up.” His mommy kindly explained that is because I am Dillon’s Mommy and am allowed to, plus I am a grown up so I don’t need help. It wasn’t until we were almost at our destination (which was about 1.5 hours away) that I finally guessed (correctly that is!) where we were going. My sweet husband bought tickets a month or so ago on the internet for Sight and Sound. We saw the production “Ruth”. Josiah did not know that I had seen this one before, but it was much different to watch it with my husband rather than a bunch of girls (no offence girls! ;-D ) Josiah has never seen anything at Sight and Sound, but I have seen Ruth and Abraham and Sarah. If you have never been there and live anywhere near here I suggest you go it is very good for adults and children. It is very pricey though. L http://www.sight-sound.com/WebSiteSS/getlanguages.do
After we saw the show we went to a fine dining restaurant (which Josiah had already bought a voucher for.) I am sure we made quite a sence in the restaurant though! We got there and sat down until the waitress came to ask what we would like to drink, we both ordered water. Then when she came back and asked for our order, we ordered an appetizer of baby lamb chops to split. (This was the only appetizer I knew what it was!) Then we ordered our meal (yes, I am typing correctly when I say meal and not meals) We decided to split pork something or other that I don’t even remember what it was. Again, it was the one I knew what most of the things in it were. Then we both got up and went to the restroom, Josiah returned rather quickly but I was standing in a bathroom stall for 15 minutes pumping. While I was in there at least one person came in and out. I wonder - what did they think that noise was? When I finally returned to our table Josiah was eating the bread they brought out. We were amazed by the fact that the butter was in a little dish and it was very cold. When our appetizer came Josiah ate two lamb chops and I ate one, they were wonderful. Then we split the spinach that came with it and were dipping our bread in the juice, I sweetly pointed out to Josiah the spinach that was in his teeth and quickly regretted it. He started picking his teeth right there at the table! I kept trying to get him to stop but finally he got it out with his tongue. We looked at desert but when they only had chocolate and vanilla ice cream and a couple other deserts we decided to pass. Upstairs they had a Ballard room – I won by one ball! Then we decided to head home. That pretty much was the end of our day. It was a nice relaxing time that we both needed.
Thank you Honey for the wonderful time and the sweet planning you did. I will always remember our first anniversary! I love you and am so thankful that you asked me to marry you.

Thank you

I know Anne reads my blog so I thought I would let her know on here how much I appreciate her baby sitting Dillon tonight. Annex brother and sister-in-law and their children are moving Monday so Josiah and I wanted to go help them load the truck. I decided though that I would stay home because I would just be in the way with Dillon and unable to help. Anne said she would babysat for me. This does mean a lot to me because I know Anne doesn't care to watch when I suction him so for her to volunteer to watch him was a big step. Thank you Anne.

When we arrived (by motorcycle :-D ) to the house everything from the house was loaded. They were not taking hardly any furniture with them so there wasn't too much. However, they had put all the boxes into storage and Josiah was able to help load all that into the truck. Annex sister-in-law has been such a blessing to me I am going to miss her a lot. Her 4 year old son has Autism. It has been so nice just talking with her and hearing that she has gone through the same emotions I am going through. When I look at anyone else at church it is hard not to cry because they don't have the major uncertainties that we are facing for their children (I know we don't know the future and anything could happen but I think you understand what I mean). At least when she was here that was someone I knew was facing a lot of the same things we will be facing. I know what she went through at church when people thought her son was just bad and they didn't understand something was wrong with him - we will not face that part - but I think we will sometimes feel like we are alone in this simply because people don't understand what it is like. People will want to be there for us and support us but right now there isn't another mother I can cry with and share stories with that really understands. God is using this move in their life in a wonderful way - I wonder if God is using their move to teach me that He is one who does understand and that He will always be with me even when other people aren't. Thank you for the wonderful blessing you have been to me you have encouraged me in so many ways!!

Sleeping Prince

My lil prince is curled up in a ball laying on my chest sound asleep. He is so adorable! I need to wash dishes, vacuum, make curtains, eat, sleep, do laundry, and the list continues - but I am not going to. Right now I am sitting here enjoying being a mom. I am treasuring the time I have with my little boy being small enough to sleep on my chest. I am forgetting all the stress and unknowns and just cuddling Dillon. There is no better gift than a child from God! Before Dillon was born I wanted to write a poem about a child being a loan from God. I never sat down and took the time to write it, though.

A baby is a sweet and precious gift,

This gift is an unusual gift though.

A baby is not ours to keep,

Though we like to call him "Mine."

A baby, you see, is not just a baby,

He is a child, a young adult, an adult.

We cannot keep this gift in the box,

We must open the box and return to sender.

A child is on loan from God,

He wants us to raise him for His glory.

We must give him back to the Lord now,

If he is ever to serve God.

A mother wants to hold tight her grip,

But only in letting go,

Will we see the beauty of the gift.

Well, that isn't how it was running through my mind all those months before - but when I started typing that is what came out. Truly though, Dillon is already teaching me just how true it is that he isn't mine. If he were mine I would have the power to do with him as I will - in other words I would have the power to make him perfectly well. But I don't. I am as helpless as a goldfish in the middle of a desert. But right now, I can forget my helplessness and depend upon His amazing abilities. I can trust the Lord to do what is best for Dillon and for me. I can sit back and hold my baby and kiss him and know that he is in the hands of the Great Physician.

Daddy and Baby Boy

Last night Dillon decided to be wide awake from 12:30 until 2 am! And I do mean wide awake. I went downstairs with him to put him to bed. Well before I put Dillon the the pack-n-play I decided to hold him. I was laying back on some pillows (so I was at an upward angle) and I put Dillon on my chest. Well the little monkey decided he wanted to be up near my shoulder - and so he did. Dillon quickly made his way all the way up and past my shoulder. His head had gone beyond and it was hard to get a good grip on him to pull him back down. Then, once I did, he decided to do it again. Only this time he lifted his head enough to put his cheek on mine. I picked him up and put him back down lower on me and once again up he went! Then Daddy came and we put Dillon on daddies chest and he did the same thing. Then Si put Dillon so his feet were on the bed and he was laying across s's chest. Dillon was pushing his head up with his arms and pushing up on his feet and lifting his lower body up too. Then Si was teaching Dillon how to walk! He was holding Dillon so that his feet were touching the floor and Dillon was (not on purpose I'm sure) moving one foot then the other. It was the cutest thing to see Daddy and Baby Boy playing together. If we aren't too tired and can stay up with him again tonight I want to take pictures and video clips of the two of them. (The only time Si scared me is when Dillon decided to do a flip in the air - yeah like Dillon had any choice in the matter! - and then when Daddy decided to pick Dillon up up side down for a few seconds!!) All in all - there is nothing more wonderful than watching the man you love with your whole heart sweetly playing with the little boy you love with your whole heart. I love you both!!