Thursday, September 28, 2006

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 Thank you!

Tuesday, September 26, 2006

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.

Friday, September 22, 2006

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!

Monday, September 18, 2006

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!

Tuesday, September 12, 2006

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 –

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.