Happy Birthday Dear!

Yesterday was my husby's 24th birthday. I made him roast, potatoes, and carrots for dinner then we took Dillon to a couple in our church for them to babysit him for a few hours. Josiah and I went to a theatrical production of "A Christmas Carol" in Allentown. It was very good and it was nice to get away for a little bit. On the way back to get Dillon I really wanted a hot fudge sundae from McD so we got cheeseburgers and ice cream and ate it on the way.

Dillon only had 1 big seizure (10 minutes) and maybe 2 little ones yesterday but so far today he had one at 2 am, 5 am, and 1 pm (none of which seemed to last more than a couple of minutes). The biochemist said since we are seeing improvement he is pretty sure it is working that we just need to give it more time to fully kick in. This makes sense as I have been told natural things can take up to six weeks to take full effect. Natural medicine is not as harsh as the drugs which are therefore "effective" more quickly.

Please continue to pray that the seizure will stop - SOON! I was feeling so excited yesterday that he made such improvement but today I am a little down again since he has had a few more. I guess it could be a bit of a roller coaster until it takes full effect. Also, it may be a little early to start worrying about this but: please pray for full cooperation from the neurologist when I tell him what he have been doing. If this stuff works - I will want to try to lower the drugs he is on so please start praying that the doctor will be understanding to this.

I didn't forget about Blogger....

Wow! It has been a LONG time since I last posted. I am sorry to any one who looked for updates and they haven't been there. I might miss some things since I am trying to cover so much in this blog.
1. Dillon's hearing aids are doing well. He seems to be able to hear with them. I have seen him turn to my voice a few times but mostly we have seen reactions in his hands and face to know that he hears. He seems to like music - especially kid songs like I was playing for him this morning.
2. My parents came for a visit. It was so nice having them here. My mom helped with cleaning and keeping me company and my dad made meals, washed dishes, ran errands, etc. They were a big help.
3. Thanksgiving was nice. We went to Boston to see Dillon's Great Great Grandparents (that is not a typo they are his great-great grandparents.) It was a lot of fun. Dillon liked sitting on Grandpa's lap for hours while he talked to him - Dillon even started talking back a lot. I think he enjoyed all the attention.
4. We have new hearing aid molds for Dillon and he gets a new pair on Dec 20 when he goes for another hearing test. It is amazing how much difference there is in the size of his ear!
5. The eye doctor in Philly (at a special eye center) said that Dillon IS responding to light. At first he didn't even do this. However, most blind people do have some degree of light perception so this does not mean he is seeing. It does mean, however, that he is making some progress.
6. Since Wed. Dec 6 Dillon has been having seizures. They think they let him out grow the medicine. He was only 7-8 pounds when they put him on Keppra and as of Thursday he is 11 lbs 6 oz. We took him to the ER on Friday, they gave him an IV with Dilantin (sp?) and increased the keppra even more. He has still been having them but they don't last as long and don't seem to be as strong. (We know he is having one because he pulls his arms into his chest very tight then relaxes and does this for 4-8 minutes and then stops. He also turns his head to the right every time his arms come in. I can hold him but I cannot try to stop the movement as that can cause more damage to his body.) Needless to say it has been a very hard couple of days - I never would have imagined how hard it is to watch your precious little boy go through seizure after seizure and be told by doctors "There's nothing you can do you just have to wait them out." HA! I would like to know if any of them have ever had to do this!
7. Josiah isn't working two jobs anymore the night one fired him for KISSING ME. Yeah you read that right they actually fired him for kissing his wife when I came to see him one night - is that not stupid? I told Josiah that he wouldn't have been fired for kissing another guy because that is be intolerant but for kissing his own WIFE that is grounds for dismissal. What is our world coming to!?!? Instead he is working 12 hours a day at his other job. This might be better as he can start at 7 and come home then at 7pm.
8. Well I am sure that is not all – but that is all that I am going to write for now.

Mommy and Me activity?

At first I thought Dillon wanted a weekly Mommy and Me activity since for three weeks in a row, once a week we have had a trip to either the ER or the hospital. Then I got thinking - I am with Dillon 24/7 so in truth Dillon is getting bored with me and enjoys the friend that I bring with me whenever we have to go!

After the first week of the G tube falling out, next came getting sick. Dillon's temperature kept getting up to 101.9 so the doctor's office said to take him in. After an X-ray they decided it is just a cold give him Tylenol. Great - except even with the Tylenol two days later it got to 103.0 so in to the doctor we went. He put Dillon on an antibiotic to clear anything in his lungs up. Ok, so then after that Dillon did this thing three times in two days where the milk would pour out of his mouth. He should not be able to have anything up from his stomach. This leads us to yesterday, our trip to St. Christopher's. I watched as they did the upper GI on him and it was amazing. At 90ml, or three ounces, (Dillon should be getting 120ml at a time) I saw it go flying up his throat choking him. He then coughed it out for the next hour or so. I thought for sure this meant surgery, but PRAISE THE LORD no surgery! We just have to change Dillon eating a little. He will get much smaller meals during the day and be on a kangaroo pump at night. This will feed him 45ml every hour for 9 hours. I adjusted this schedule from what she had told me, but it doesn't matter as long as he gets all his food in during the day and can handle it. Today - Dillon did wonderful for the PT. He was on his tummy on the floor and lifting his head for her. Deb said she does see this in kids, if they have reflux they don’t like lifting their head because it puts too much pressure on their belly. Maybe this is why Dillon did better today - his tummy wasn't hurting him.

FRIDAY IS THE BIG DAY! I am looking forward to getting his hearing aids! I found an herb treatment that may help his ears though; I will include this later on if I decide for sure to do it.

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!!

Seizure

Last night Dillon was sleeping on my chest for quite some time around 9:30 I put him on Si's chest so I could get his food ready for his 10 o'clock feeding. Well from 9:30-10ish Dillon would "punch" his arms out every few seconds. Dillon did this again around 3:30am-5:30 when I put him in bed with us. He was having seizures - we are sure of this because we could not stop his arms from moving - which is a sure sign of a seizure. Since I was going to St. Chris's today anyways I visited the neurology department. His g-tube check up went well, and as I suspected he gain quite a bit of weight. Last Monday he was 6 lb 15 oz - today he was almost 7.5 lbs. So the neurologist increased his medicine amount because as he has gained weight he needed the amount of medicine to be increased so that it would be enough. They said if we see any more to let them know and they will increase it a little more and then if he still has any they will check his levels. He also had the therapist evaluate him this morning. They will be sending 2-3 therapist to our house. Occupational, physical, and possibly speech. Dillon was "scored" as a newborn in every area except one - and are you ready for this.... His FINE MOTOR SKILLS were that of a two month old. In case you are wondering why I find this amazing it is because the doctors told me that the motor skills were the area that was most affected by the brain damage! They consider Dillon to be a one month old (he is 7 weeks, but until he is 8 weeks he is considered 1 month) therefore he is a little behind in things right now but we will continue working with him. The idea of Early Intervention is not to have to teach us how to stop our day and "do therapy" it to teach us how to intertwine it into our daily life so it is part of our play time with him.
A girl from church went with me today to St. Chris's and although Dillon only needed sectioned once during the whole car ride it was a blessing to me that she went with me and sat in the back and was ready to help if he needed it. I appreciate the people who are willing to help me with things like this so much because I feel bad asking for help - but I know I need it. I feel like I should be able to take my son to the doctors without help from other people, but right now I have to get over my pride and know I need help. What makes it so much worse is when I have to ask 4 or more people before I find someone who is able to go that day - but this girl was perfectly willing to give up 5+ hours and go with me. Plus we have a good time talking - two girls in a car - what else is there to do!! :-D

Chiropractor

Chiropractor: Dillon had his first chiropractor appointment today. Lino was able to adjust one bone in his neck, which is a good thing. He did not try to do too much more but wants to see us again on Wed. I asked him about how long will it take to see improvement if it is going to happen. He said he has no idea because he has never dealt with a case like this before nor is there anything like this in the medical books. So he is in totally uncharted territory. However, I told Lino about his failed hearing test and that I don't think he tracks with his eyes yet. But Lino saw him jump twice at a popping noise from the tool he uses to relax muscles. The first time I thought he jumped because he felt it but then he jumped again when it wasn't even touching him. And Lino got Dillon to track with his eyes quite a bit. Maybe I just don't know little babies and this really is all they track at this point, maybe he does have vision problems - I don't know - but at least he was tracking a little! Please continue to pray that God might use Lino to work a miracle in Dillon.

A good book: I am about to head out again to go to a lady's book study group. We have been going over the book "Created to be his help meet" by Debi Pearl. Although I do not agree with everything 100% in her book it is an excellent book that I would recommend every Christian wife (and engaged girls) to read.

Prayer Request

Tonight at church a chiropractor told Josiah and I that he may be able to help Dillon start to swallow by adjusting him several times. However - he believes that if he is unable to help him then it is from his brain damage and that he will never swallow. So I will take Dillon to see him tomorrow but please be praying that this man will be able to help him! (I know it will take several adjustments so I will not be expecting anything HUGE tomorrow but still....) Please, please pray!

Praise the Lord

An email just came about that man who prays all the time for Dillon!!!!!!

Barry went down for the biopsy procedure…they wanted to do a CAT scan first…it showed the cavity on one lung was shrinking AND the new nodules in the other lung were healing as well. SO the doctor said there is no need for the biopsy. Barry was pretty excited about that…then he returned to his room. Linda met a Chinese girl, Ingrid and was witnessing to her. She just received Christ a few minutes ago! Maybe this is the reason they were at Hershey?
Needless to say, Barry is having a very good day.
Did God answer your prayer for Barry?

Praise God! Thank you to everyone who prayed!

Yard Sale

Anne, Jenn and I decided to go to some yard sales this morning. I was looking for toys with lights for Dillon and maybe a mirror or something to paint on. Jenn's husband told her of signs for a community yard sale - so that is where we headed off to. The signs lied - thats all i can say. We drove up and down (in three cars) looking for this big yard sale that wasn't there. So finally Anne gave up and was going to church (well it turns out she found 2 on her way). Jenn and I tried this other sign we kept passing for a different yard sale - it lied too! there was no yard sale. We gave up then too!

Kuenzi Family

Some more proud grandpaents (and Aunt). This poor kid is doomed! He is the first grandchild on either side! Poor kid! :-D

Schnarr Family

These are pictures of my parents with Dillon. As you can tell they are very proud grandparents!

Okay, here is my first attempt at one stoke painting. Practice, practice, practice!!! but it was fun! :-D

A Prayer Warrior / Home Business

Today I was pretty down again - the element of the unknown. But then this afternoon I recieved a call from a lady in my church. She told me how this man in our church has been praying for Dillon. What makes this so special is that this man has been battling cancer since before I even came to the area. He has had stem cell replacement, shingles, mouth sores, etc. Just this last week he nearly died. He has at least for 4 different infections in his lungs and he couldn't be awaken from being put under when they were running tests on his lungs. His story is so much longer than this, but I can sum it up by saying what someone told me. He is the closest man I know to Job. He has been through so much and him and his wife still love the Lord with their whole hearts. They witness to all their doctors and nurses and other people in the hospital. I don't know if anyone has trusted Christ as the Saviour becuase of them or not - but so many seeds have been planted. They have done what God calls us to do - pllant the seeds - and now it is for God to make the seed spring forth into life. His wife told this other lady that he will wake up in the middle of the night and pray for others and that he has been lifting Dillon and us up in prayer. This man - who is so sick and in need of prayer himself- is spending his nights praying for US! What a blessing it was to hear. Please pray for this man as well, that if it is God's will he will beat the cancer and his health will return to him! Thank you.

I watched the first video on one stoke painting. My sister in law is letting me borrow her videos. I want to practice it and see if I can get good at it. {I am not an artist, I was a painter though. I painted interior/exterior commercial and residential. My father is a painter and I started working with him when I was about 15. I also worked for about 2 years (summers and vacations) with the contractor he works for. I enjoy faux finishing so maybe I will enjoy this as well.}If I can learn it will open a lot of possibilities of things I can paint. My goal is to have something I enjoy doing as an outlet from life :-D and also to make a little money from home. My husband and I have searched and searched for things I can do from home. We have come up empty handed. Most things require a lot of money at first and are risky. We don't have money to risk. I know, even if I can learn how to do this painting very well, I won't make a lot of money - but the supplies were free and it looks fun - so it is worth a try. If any one has any other suggestions though on way to make money from home please let me know. It just has to be something I can drop to take care of my son and pick up again later. Thanks for any suggestions you may have!

What are you?

I got this link from Anne so I thought I would give it a try. Here is mine, what are you?

Your Linguistic Profile:

60% General American English

15% Dixie

15% Yankee

5% Upper Midwestern

0% Midwestern

What Kind of American English Do You Speak?

Dillon's Hearing

Well yesterday was another adventure. Thankfully a lady in my church went with me to the hospital (1 hr 20 min away) and it turned out to be a BIG blessing becuase Dillon needed suctioned A LOT! After I got there we discovered I messed up the days - my appointments were for today. OOPS! Praise the Lord both of the doctors saw me anyways. Dillon's g-tube is is just fine. Praise the Lord there are no complications with it. Dillon's hearing, however is a different story. He failed the test again. They thought it might be because of nuerological trouble. So they gave him a test that wouldn't let the nuerological problems affect it - he failed. Then they gave him another test - he failed. They told me they thought he has water in the middle ear- to see my GP doctor. I did that tonight. He doesn't see anything so is sending me to a ear, nose, throat specialist. I will set up an appointment tomorrow. I am praying Dillon's hearing problems IS due to some sort of infection and that it will be treatable. He has been extra sleepy the last couple of days - I am not sure why. He also has not been lifting his head hardly at all. Maybe taking him in the car with the heat has just tired him out.

HEAVEN'S VERY SPECIAL CHILD by Edna Massimilla
A meeting was held quite far from Earth!

It's time again for another birth.

Said the Angels to the LORD above,

This Special Child will need much love.
His progress may be very slow,

Accomplishments he may not show.

And he'll require extra care

From the folks he meets down there.
He may not run or laugh or play,

His thoughts may seem quite far away,

In many ways he won't adapt,

And he'll be known as handicapped.
So let's be careful where he's sent,

We want his life to be content.

Please LORD, find the parents who

Will do a special job for you.
They will not realize right away

The leading role they're asked to play,

But with this child sent from above

Comes stronger faith and richer love.
And soon they'll know the privilege given

In caring for their gift from Heaven.

Their precious charge, so meek and mild,

Is HEAVEN'S VERY SPECIAL CHILD.

Adobe Photoshop

Katie came over today during lunch to show me how to use Adobe Photoshop. There are so many things you can do it is unbelieveable!! This is my first project attempt.
I love you Honey, and so does our little boy!

Anne

Instead of writing about how I became friends with Anne - I am just going to link to her blog where she wrote the whole book on it! From my perspective...: A Tribute To Friendship From my perspective...: A Tribute To Friendship Part 2 From my perspective...: A Tribute To Friendship Part 3

All I can say is that Anne is a true friend that I don't want to ever lose. There is a song I like and is very fitting. (song by Micheal W. Smith)

Packing up the dreams God planted
In the fertile soil of you
I can't believe the hopes He's granted
Means a chapter of your life is through
But we'll keep you close as always
It won't even seem you've gone'
Cause our hearts in big and small ways
Will keep the love that keeps us strong

And friends are friends forever
If the Lord's the Lord of them
And a friend will not say never
'Cause the welcome will not end
Though it's hard to let you go
In the Father's hands we know
That a lifetime's not too long
To live as friends

And with the faith and love God's given
Springing from the hope we know
We will pray the joy you live in
Is the strength that now you show
We'll keep you close as always
It won't even seem you've gone
'Cause our hearts in big and small ways
Will keep the love that keeps us strong

And friends are friends forever
If the Lord's the Lord of them
And a friend will not say never
'Cause the welcome will not end
Though it's hard to let you go
In the Father's hands we know
That a lifetime's not too long
To live as friends

And friends are friends forever
If the Lord's the Lord of them
And a friend will not say never
'Cause the welcome will not end
Though it's hard to let you go
In the Father's hands we know
That a lifetime's not too long
To live as friends
To live as friends
Though it's hard to let you go
In the Father's hands we know
That a lifetime's not too long
To live as friends
No a lifetime's not too long
To live as friends

Anne is one of those friends that a lifetime is not too long, and the welcome will not end! She basically gave up 8 months of her life while my husband and I were engaged. She would come over to my apartment, go on day trips, go with me to his place, even took an over night trip to WV with us. All becuase she cared about us and wanted us to have a chaperone and since neither of our families live in the state we needed help. She came several times to the hospital to sit with me while my husband was at work. I really don't know what I would do without Anne as my friend.
Since she filled us all in on how we met, I thought I would add some of our memories!

Anne was the only person I know that heard my testimony of how I got saved and didn't believe I was really saved. For this I am not upset that she didn't believe me - I am grateful - eternally grateful. As far as I know she was the only one praying that I would get saved. And one night while sitting in church God opened my eyes and showed me that when I was seven I said the words but I only said it because my sister died and I wanted to see her again. So that night - October 15, 2003 I was saved. Before I went to bow down before God, Anne was out of the pew (I sat with her) and was at the alter praying, I later found out it was for me! Well Praise the Lord becuase I did get save that night!

As I said we sat together in church - well Anne likes flat shoes and I like heels. After the welcoming (shanking hands) I would always slip off my shoes. So I was next to Anne and about 3 inches taller then I was suddenly the same height. Somehow that usually made her laugh.

Everyone at church thought Anne and Rachel (I will tell more about Rachy in another post!) were calm, well somehow after I got there that all changed. Anne and I have had many water fights. Some in my apartment and some in her kitchen. I don't even know what starts them we just end up tickling each other and then dumping water on each other.

We (Anne, Rachel and I - but mostly Anne and I) have many memories annoying someone at our church over the computer by switching the person who was typing. I will leave it at that because only Anne and Rachel can appreciate the humor in that. Remember when Anne had jury duty? ;-)

We liked to get Rita's (Water ice and custard) after church, even when it was too cold to even sit outside to eat it. So after church we would get some and take it back to church to eat.

When Anne was helping me move from my little colege dorm to my apartment I assured her that we would only have one car load, becuase after all sshe had a HUGE station wagon (which I never minded riding in, but we have had many laughs over). However we ended up making 2 or 3 trips. I have NO idea how I fit all that into one little half of the dorm room.

A true friend will tell you when you are doing something wrong, even though they know you may get mad and end the friendship. Anne and I have always had the relationship where we can rebuke each other in love. We both know it is only a friendship if we help each other and are honest. I remember Anne helping many times, in particular when my older sister was getting married and I was upset becuase I was losing my sister and friend. (which by the way, we aren't as close as we used to be, but we are always sisters and always friends!) She told me buntly (as always!) that I needed to get over it. I don't remember everything but she has been a true friend.

Anne and I were cleaning at her house before her parents returned from a trip (which I totally owed her becuase she helped me clean my apartment many times!). Well we got very hot cleaning and since my apartment (which was a mother-in-law suite attached to a house of people in my church) has a swimming pool in their back yard - we decided to go swimming. Well the only problem with that was that the pool was heated only by the sun and well it was October! It was FREEZING! Anne ended up getting a cold from it.

The day we were going to WV Anne spent the night at my apartment, when we woke up we didn't feel like eating anything for breakfast except ice cream...so we did!

Anne got to the hospital the day Dillon was having the surgery for the G-Tube to sit with me and declared her car had a flat tire. We decided when Josiah got home from work we would ask him to change it. We started watching a movie (to distract me) and forgot all about it until Si got there. We took him out to the car and he asked "which tire is flat?" Anne pointed to the driver's front tire. "No it isn't." "Are you sure? It looks low." Well we took the car to a gas station and if you know anything about tire pressure you will know that 38 PSI is NOT low. the noise Anne heard the tire making was from the groves in the parking garage.

Another thing we have a good laugh about is the fact that somehow everytime my dad sees Anne (which isn't all that often since he is out of state) she is either eating or at lest has food in her hands. He thinks all she does is eat! He told her that when she gets married he is coming to the wedding (even if not invited - which she assured him he will be) and is going to hand her a bag lunch as she walks down the aisle. My mom told him he should just get her a chocolate rose to put in her flowers in case she gets hungry! She really doesn't eat that much, I know I eat a lot more than she does, she just seems to have bad timing where my dad is involved.

Well that's All I can write for now, I don't know if people reading these will find it funny or not, but I know Anne will. Thank you for your friendship.

Dillon's Situation (and some other stuff)

I was sitting on the porch holding Dillon and thinking about these things:

How would we know His strength - unless He shows us our weaknesses.
How would we know His love - unless He picked us up when we fall.
How would we know His peace - unless we have trials for Him to bring us through.
How would we know His perfection - unless He showed us our sins.
How would we know His power - unless we had something for Him to "fix".
How would we know His faithfulness - unless He carries us all the way through.
How would we know His forgiveness - unless we have a reason to ask for it.

God will show Himself true and faithful, can we say the same? God has entrusted a dear sweet little guy to my husband and I - will we be found true and faithful in raising our son for the Lord?

Okay, in case any one reads this and doesn't know about Dillon I will try to fill you in and keep it kinda short. My pregnancy with Dillon (although we didn't know he was a boy yet) was the textbook perfect pregnancy. I never had morning sickness, never had mood swings (well no more than normal! :-D ), I never had cravings, I only gained 25 pounds, I was active and loved being pregnant. My husband and I don't have insurance so we had to pay for everything out of pocket. We went to a midwife who many ladies in our church see. She was very nice and really cares about the babies. The cost for her was $2,300. The cost for the hospital (which was a nightmare in and of itself since people do not inform you of all the stipulations for the special midwife cost of $1,838). Okay, this is really hard because we have debt, but we knew God would provide. We did not have an ultrasound because everything was going great. I worked (at Sherwin-Williams) until 2pm June 16, 2006. At 3 pm my contractions started at 7 minutes apart. I was on the phone with my mom during them so I had someone to talk to. At 4:30 pm she told me to call my husband home from work because the contractions were about 4 minutes apart. By the time my husband got home around 5 they were 3 minutes apart. We waited a little bit to make sure they didn't slow down or stop or anything. We then called the midwife and she said to come to the hospital. We arrived there around 6pm with contractions about 2 minutes apart. I was 7 cm dilated - she broke my water. I was on the monitor for about 20 minutes and then she said I was 10cm. I went into the hot tub (where I was hoping to give birth). After an hour in there she told me to get out because it was time to start pushing but I kept slipping under the water. After about another hour Dillon was born. Josiah told me he was a boy while they had him laying on me. The midwife told him to cut the cord then yelled at him to hurry up. They immediately took him away - he wasn't breathing! I didn't see him again for an hour and a half. During this time I recovered enough that I felt perfectly fine - I would have never of known I just had a baby!! Josiah and I never left his bed side until they had him off the ventilator (which happened at 3 am) At 5am Josiah wanted to go lay down. I left to go sleep at 5:30am. At 6:30 they woke us up saying he had a seizure they were transferring him to St. Christopher's in Philly!!! We spent the next 36 days there as they ran EEGs, MRIs, CAT scan, spinal tapp, tons of blood work, put an IV directly into his chest, placed a G-tube in him (feeding tube because he can't swallow), did physical therapy, occupational therapy, speech therapy, etc. The answers we got are : 1. We have NO idea why he wasn't breathing - there was nothing to indicate any problems. 2. He may still develop CP or other muscle issues (tightness to the point of not moving). 3. He does have brain damage - mostly in the motor skills area 4. He may never be mentally above a 2 year old. 5. He may never be able to swallow and be on a feeding tube and suction machine for life. and lastly 6. WE HAVE NO IDEA WHAT IS GOING TO HAPPEN IT IS ALL UP TO HIM. Well no doctors, that is where you are wrong - it is all up to God and for HIS answers on what is going to happen with Dillon - we wait. But God has already done so much with him. Dillon is breathing on his own (he was intubated 5 different times), he is at home, his seizures have stopped (he is on medication), he still doesn't cry but is making little noises occasionally, he scoots across the floor, he can lift his head and turn it, he is able to hit at my hand when I suction him (shows he doesn't like it and is able to move his hands to the source (motor skills)), he is starting to try to "stand" on my lap when I hold him. He is a blessing from God - a blessing that would like me to feed him now! :-D Hope that isn't too long that it is boring but that is the short version!

What goes up must come down

Well, I was at the top of the rollar coaster this morning and now i am near the bottom. I got lost trying to find the hospital where Dillon's check up was, when I finall found it it took a while to find where I was allowed to park. I went to get Dillon out and saw that his feeding tube had slid down so the gravity wasn't feeding him. I finall got everything loaded on me which includes a diaper bag, a sucition machine, an apena machine and Dillon in his carrier. I saw a girl I know who is going to school and has some classes there and she directed me to where I needed to go. I walked down the big hill (what goes down must also come up in this case which is what I was thinking as I walked down.) I fouond the department I was supposed to be at and waited to "register". My little boy's skin was red becuase he was so hot from the AC not working in the car, which worked before Walmart had it yesterday for an oil change. Fianlly I told them I was late becuase of getting lost can they make sure I would still be seen. They had someone come out becuase I was not on their list for appointments today. To make this even longer story somewhat short I was supposed to go to the hospital by the same name on the north end of the city (I didn't even know there were two hospitals!) But that hospital didn't have me on for today either...or ever! I know someone called me from there and set the appointment up but they hand write everything and don't use computers. So they are booked till Feb!!! Now I am waiting for the NICU to figure out with the nuerologist what is going on. Oh by the way I went back to Walmart they looked at the car and said they didn't do anything wrong but amazingly enough the AC worked when I got back in! Dillon's head had fallen forward on the car ride and was resting on his chest but I didnt know becuase I can't see him. I am praying he didn't hurt anything. I am pretty sure he didn't becuase he didn't make any noise or anything indicating that he was hurt. I am deffinatly at the bottom, I don't want to go out if this is what it is like!

July 28, 2006

Well Dillon came home on Saturday July 22, 2006! I couldn't be more happy. This week has been an interesting one. My parents came out to visit the night before we came home. They were such a blessing to me while they were here. My dad took care of warming Dillon's milk and getting the feeding tube ready for all of his meals and then cleaned it all after wards. He also cooked (or heated meals that were given) and did all the dishes. They bought Dillon music CDs to stimulate his mind a rattle for his little hand and many wipes and baby wash. They also bought Josiah and I ice cream from Rita's...twice! They wanted to do as much as they can while they were here since they had to leave so soon (they left today). My mom played with Dillon and stayed by his side during his tummy time to encourage him. Thank you for coming and for your love for the three of us!
Well Sunday was his first time in church. We went in late and left early so that he wasn't near a lot of people at once. We will continue this for at least another week or so. Sunday night during the time when a men's quartet from our church sang, Dillon made a little noise. It was the first time I have heard him make noise that wasn't apart of a cough. Then Monday was another big day for Dillon. He started to pick his head up while on his tummy. Since then he has been trying very hard to turn his head completely. He can do it, but still struggles with it. It will come. He also got his first real bath. Daddy and I washed him in our kitchen sink. All was going very well until Daddy went to turn him so we could wash his back. Daddy had it all under control but I freaked out when he had Dillon in the air trying to put in on his tummy on the bath bed. But all in all it went very smooth. After his bath his Daddy trimed the hair around his ears so he would look more respectable. :-)
Dillon has had one trip to Walmart so far. Grandpa pushed him all around while he looked at everything. Dillon slept almost the entire day after the trip! We are getting ready to go to his first Nuerology check up. I am taking my camera of him lifting his head to show the doctor becuase you KNOW he won't do it when he is in front of the Doc!
So far life as a mom to a special needs boy isn't so bad. I have had a lot of help thus far so this next week will be a little harder, but he is so wonderful and such a gift from God that we WILL make this work. Right now I am feeling very confident that God will help me to be able to help Dillon and tha God will help Dillon to keep making progress. However, I know I am on a roller coaster becuase I do not control my thoughts and emotions like I can/should. Some days I feel like, if I could, I would go back and not get pregnant at all - for my sake and his. I am not mad at God I just am not sure I can handle this and I don't want my little boy to sturggle his whole life. Then when I have enough sleep and nutrition and prayer and Bible time I come to my senses and know that I wouldn't give him back for the world! He is my very special gift from God, God knew just what He was doing when I got pregnant. I read a story about Corrie Ten Boom (this is in my words remembering what i read) that she told her dad at a young age that she didn't think she was strong enough to die for Chirst if the time ever came. Her dad asked her, when do i give you money for the train ride - three weeks ahead of time? She answered, no you don't give it to me until I need it. Our Heavenly Father is just like too. He will give us the strength right when we need it. He has already proven this by giving me the strength to sit by Dillon for 5 weeks in the hospital and to get through everything that ha happened to him so far. All I know is that God knows what He is doing and that no matter what Dillon's future may be - I love the little boy God has placed in your lives.