What a blessing I just have to share it with everyone!!!! Dillon was tracking today! The vi son therapist was sure that he was tracking a picture of a black and white dog today. This is the first time that we have been sure he was tracking anything let alone something that wasn't a light. As you can imagine - I am floating way up above cloud nine right now! I have been seeing Dillon try to lift his head when I am carrying him more this last week and wasn't sure if he could be seeing more or not. I have also seen more times where he was actually very alert and then sleeping - like a normal baby - whereas before he was normally just in this "in between" state where I couldn't always tell if he was awake or asleep. We don't know what all this could mean as far as how much useful vi son Dillon will have - but it is a HUGE improvement!!! We think we have seen little tracks before with a light but he wouldn't ever do it more than once for us to be sure, but this time Dillon was tracking for most of the hour session!
I tried to get two pictures of Dillon but my camera card isn't working so I have to wait for my IT husby to come home and help me get them on.
Thursday, February 22, 2007
Wednesday, February 21, 2007
A good message
I wanted to write this on Sunday - but forgot. The message was wonderful Still, however I wanted to share it with you. In service Pastor talked about the prayer of Christ right before He went to the cross. Now remember, Christ was PERFECT He never sinned, not once! Yet right before He was about to go to the cross to die for you and I He said (Matt 26: 39), "O my Father, if it be possible, let this cup pass from me:" This touched my heart so much. You see - it isn't sin for me to be asking God to take away this situation (Dillon's problems) from me. It isn't wrong to go to God and say "Lord I don't want to do this, please take it away." I have started to feel guilty about asking God to take it away, but even Christ asked for His sufferings to be taken away. However - and this is the important part - the verse doesn't end with that. The rest of the verse says, "nevertheless not as I will, but as thour wilt." It is not sin for me to ask God to just take this all away, that I would wake up one morning and Dillon would be healed. There is sin, though, if the rest of my prayer isn't, "but Lord if that isn't Your will I accept whatever Your will is." How encouraging this was to me!
A good message
I wanted to write this on Sunday - but forgot. The message was wonderful Still, however I wanted to share it with you. In service Pastor talked about the prayer of Christ right before He went to the cross. Now remember, Christ was PERFECT He never sinned, not once! Yet right before He was about to go to the cross to die for you and I He said (Matt 26: 39), "O my Father, if it be possible, let this cup pass from me:" This touched my heart so much. You see - it isn't sin for me to be asking God to take away this situation (Dillon's problems) from me. It isn't wrong to go to God and say "Lord I don't want to do this, please take it away." I have started to feel guilty about asking God to take it away, but even Christ asked for His sufferings to be taken away. However - and this is the important part - the verse doesn't end with that. The rest of the verse says, "nevertheless not as I will, but as thour wilt." It is not sin for me to ask God to just take this all away, that I would wake up one morning and Dillon would be healed. There is sin, though, if the rest of my prayer isn't, "but Lord if that isn't Your will I accept whatever Your will is." How encouraging this was to me!
Tuesday, February 20, 2007
Why "Jaydonn"?
I didn't explain yet why we are going with the name Jaydonn. It came from the name Jaydon which if spelled Jayden could be a girl's name (both of those spellings could be said the same way). We didn't want people to hear the name and not know if he is male or female so Josiah thought to add the "n" at the end so that it would be pronounced as I was saying it - Jay-donn. We picked it becuase it means Jehovah has heard. Not only is this evident everyday in our life thru Dillon's life, but has already been evident in the life of this young little man. We love our precious little Dillon Boy with our whole hearts and now we love our tiny surprise gift from God, Jaydonn!
Monday, February 19, 2007
New Baby and New Pics
I forgot to tell ya'll. Last Monday when I bought Josiah a coffee I bought a small one for myself as well. After drinking that and then laying down resting - while waiting for Josiah to find where I was - I felt little Jaydonn moving for the first real time. I think I had felt him before but he wouldn't keep doing it for me to be sure. This time I felt him moving for a good 5 minutes - it must have been the caffinee! :-)
New pictures of Dillon have been added to our website www.josiahntiffany.com under our family link then just click on the picture to see the new ones. The first ones are of DIllon in clothes that used to be Josiah's and the last five are him in outfits that my Grandmother and Great Aunt made for him when he was born.
New pictures of Dillon have been added to our website www.josiahntiffany.com under our family link then just click on the picture to see the new ones. The first ones are of DIllon in clothes that used to be Josiah's and the last five are him in outfits that my Grandmother and Great Aunt made for him when he was born.
Wednesday, February 14, 2007
My Sweetheart!
See what my Sweetheart brought me home! His first day of work, he had to spend about 4 hours in the car becuase of weather and he still remembered to stop and get me flowers on the way. Isn't he sweet? :-)
Dillon's First Snow!
Today we have the first real snow fall in Dillon's life - so of course I had to take him out in his new sled! We only stayed out about 3 minutes, though. I don't think he liked the cold wet stuff falling on his nice warm face!
Tuesday, February 13, 2007
Time Away
Yesterday I planned a surprise for Josiah. It was a late-birthday and early-Valentine's Day surprise. Anne took Dillon around 3pm when Si got a call to come get something from church. There he got an envelope with a clue to send him to the cafe I used to work at. There he got a coffee I have prepaid for and another envelope to go to the place where I was the morning Dillon was born. He went to the hospital then figured out he was supposed to go to Sherwin-Williams. There he got mints and another clue that gave him an address. I was waiting for him at a hotel. We were able to go swimming in an empty very clean and clear indoor pool. Then we had dinner at the restaurant in the hotel. Thank you to Anne who saved us 50% of the bill with a coupon she had. We had to get up early to go look at some houses. Josiah starts a new job tomorrow in Wayne, PA which is about an hour away. Therefore, we are looking for a house in between his work and our church. We found a neighborhood that looks really nice - it is old but doesn't look too bad at all. It is the cheapest area anywhere around and it is 30 minutes to Si's work and 30 minutes to church. So we are looking in this area because we would like to move soon before I get too much further in this pregnancy. We both think it would be easier to move while I am still pregnant than to wait until after - plus it waste Si's time. Nothing is definate yet - we are just looking right now.
The time away was so nice - it was good to just laugh and be a young married couple instead of adult with responsibilities/mom/nurse/etc.
The time away was so nice - it was good to just laugh and be a young married couple instead of adult with responsibilities/mom/nurse/etc.
Thank you to Anne for watching Dillon over night and to N. for watching him the couple hours this morning until we got back from house looking!!
Tuesday, February 06, 2007
Praise the Lord!
Praise the Lord!! Dillon's EEG results came back today. He is not having the original type of seizure that he had in the NICU. Therefore he can stay off of the one seizure drug and is only on the new seizure medicine! This is a huge blessing!
Share some of the blessing in your life with me- I always write about what is going on in my life but feel free to add your own blessings and even prayer requests in a comment.
Have a great day!
Share some of the blessing in your life with me- I always write about what is going on in my life but feel free to add your own blessings and even prayer requests in a comment.
Have a great day!
Monday, February 05, 2007
Sermon Notes
I wasn’t able to go to Sunday School yesterday so I decided to watch a sermon from North Valley Baptist Church, where my brother-in-law attends. http://www.nvbc.org/ By clicking on services you can watch old services or even watch it live stream – but don’t forget they are in CA! I watched the sermon from 12/17/06 Sunday Morning service preached by Pastor Trieber called “Dealing with Adversity”. It was just what I needed to hear at he moment. I am going to put the notes I took in here but if you are in need of hearing the same thing (from someone who isn’t a close relative or friend as was the case with me!) I implore you to watch it. Most of what I am adding are the thoughts I had when listening the main point were the Pastor’s though. I didn’t plan for this to be long but as I type- it IS sorry. If you can’t read it all read the main points and just apply it to your life instead of reading how all it impacted me.
I. Source of adversity
a. God – God allows adversity for His glory. This struck me – I know it is true but sometimes I wonder if there isn’t a better way for God to get glory. I know doesn’t make sense to you – sounds like I am a heathen – but when you are in the midst of the hardest trial of your life it is how you feel, at least I do sometimes. Then he said something about God allows it to help others because when I don’t quite it encourages others. I then saw – there is NO other way for someone else to be encouraged other than by the experience of one Christian continuing on in the midst of a trial. Specific trails are the best. Let me explain that – I know personally if someone tells me they know what I am going thru right now and then their story is “my child always got colds and caughs then they were young.” (that was an exgaeration and not with anyone in particular in mind) I am very put off. Dillon isn’t struggling with colds, this is serious, life-long, life-consuming, minute-by-minute struggle. Although I do know I am not in the worse possible situation with my child as I could be, it certainly isn’t a reoccurring cold. I know that the only people I have found true encouragement in are the ones who have gone through life-treating, long lasting, no end in sight in this world, situations with their child. God IS going to get glory though all the adversity I am facing right now if I let Him, but I also may be the only source of human encouragement to someone else when they are in a similar situation. Will I be an encouragement as an example to follow or will I be an encouragement as an example of “don’t let this turn you into her.”? I don’t remember where this was brought out in the message but it was such a blessing to me. I have been told so many times “God is in control” “God won’t give you more than you can handle”, and “all things work together for good”. I know people mean well, but when you hear it, literally, hundreds of times it loses its meaning. People say it because they don’t know what else to say. I know those things are true, but they are not a comfort – at least not to me. It sounds like an automated response from a “good Christian”. Pastor Trieber said he has a Pastor friend whose 15 year old son died in a car accident. Three years later his dad still could not see any good from the situation. I am sitting here watching my son’s life and saying to all those who casually answer me “all things work together for good…” How? Where? What good is there in my son’s health being robbed from him by a human mistake? His Pastor friend, however, said “I just can’t see any good from this, I just have to live by faith that God will keep His promise.” You all may be sitting there saying; I could have told you that. However, this goes back to my pervious point, sometimes you really need to hear the obvious answer from someone who had gone through something similar to really get it to sink in and not sound cliché. He may not see the good from his son’s death, but God did use him in my life yesterday to help me to just “live by faith that God will keep His promise to me.”
b. Devil – We all know the story of Job. He was tried above what so many of us are capable of understanding and yet it wasn’t because of sin in his life. So many people think severe adversity in a person’s life must mean that they are living in sin. So far I have only had one friend who honestly asked me if it was possible. I can honestly say, after talking with my husband, I know there are things not right in my life, things need to improve. I cannot say though, that I am willing and openly living in sin to which God would punish me through my son’s health. IF that is the case, I would think the sin would be blatant enough that I would clearly know what God was chastening me for. Therefore, it is a possibility the devil is testing me to see if I will turn against God. I can say this, I know I have failed this test so many times in the last eight months. I have turned against God, for short periods of time. I twist the situation in my head and make it sound good – really good – I have quite the imagination – as to why I can be mad at God. I know He is in control and that nothing can happen to me without His permission – therefore He is doing this to me right? He is letting me hurt, letting my heart break as I look at my son’s disabilities, He is causing me to be discouraged by putting all this on my plate at once. He is causing my son to be sick. I know more than anything in this world that God is the One and Only One who can heal my son. I am hopeless, the doctors are hopeless, I would give anything to heal him and yet I can’t. I know the God that spoke a word and the world was made, who spoke a word and the sea clamed, yet no matter how many times I cry until Him – He hasn’t spoken the word to make Dillon whole again. So God is not helping me right? (Again, if you haven’t faced something like this you may not understand how I could think these things against Almighty God- but I am human and I love my sons. These last eight months have been harder than anything I ever imagined.) I have never stay “mad at God” for long, I can’t even when I am mad I have this annoying feeling in the pit of my stomach that won’t go away saying “You know you can’t be mad at God, you know WHO God is and that is all you need to know.” That little voice only adds to my frustration as I try to be mad at God and even in my attempt know I really shouldn’t be. Maybe the devil is trying my husband and I. Josiah has truly been proven faithful through all of this. I don’t remember a single time when he ever allowed himself to blame God for any of this. I have not been so faithful. I need to remember that it could be Satan standing before God saying “See! I told you she would fail You!” What a horrible thought!!! If I can keep that in mind it will help me to not try to place the blame at God’s feet.
c. Sin – I covered this one already. Sorry I think I got ahead of myself, but I am not going to go back and try to sort it out. :-)
II. Sadness of adversity
a. Some spend their life trying to analyze the adversity in their life. Umm can I say guilty! I don’t even know how many times I have replayed the day of his birth in my mind trying to find the answer, trying – in a weird way- to find where I messed up and caused this. I have tried to figure out the how, where, when, and most importantly the why of this situation. I can’t. If I continue my life will be defined by the adversity in it rather than overcoming it.
b.Some spend their life accusing. Ummm I have to say guilty once again! I have accused God, myself, and now in light of new information the health care professionals. Pastor said some people blame God and yet don’t they realize they are breathing HIS air? Oh how true, I am alive because of Him and yet I blame Him? How foolish am I.
c.Some people spend their life in anxiety. Guilty! Notice something not so good going on in my life here? Fear and frustration are big clues to this. I have been terrified since I found out I was pregnant again. I get frustrated almost daily that Dillon isn’t “normal” and worse yet – that the doctors who are making all the money can’t give me any answers as to what to expect in Dillon’s physical/mental future. I am scared of what the future holds for me as well. Will I have to put my son in a home one day? I will spend the rest of my life till the day I die taking care of my son as though he were still an infant? It is selfish I know. I wanted children young, like my parents did, because they are still young and Lord Willing will have so many years left with their children and grandchildren. Yet my child may always be living completely in my care, never learning to smile or laugh, never learning to sit or walk, never learning to care for himself, never even learning to tell me “I love you Momma”. It is selfish, I know, but it is a great fear of mine that I think about for at least a few second almost every day.
d. Some people spend their life in anger. Normally I would say “This one isn’t me”, but this last couple of days it has been me. I have taken my fears out on my poor husband. I have been yelling at him for not comforting me when all he has been doing is telling me what I needed to hear (a lot of it was practically word for word this message!)
III. Success from adversity
a.Some people have learned to accept their adversity. Don’t view it as our enemy but as our friend. It can be the thing that can bring me closer to God.
b. Some people have learned to adapt to it. Adapt or die. That is the bottom line. I have to learn to adapt to it or I am going die and Dillon could literally die if I refuse to adapt. Not only in the literal sense but I will kill us both if all I can do is complain and look at what he can’t do instead of teaching him to be happy with the way God made him to be.
c. Some people have learned to assist others and ascend up. Paul was stoned so badly everyone thought he was dead and yet the Bible says in Acts that “he rose up” and next thing you know he is off on his way to go preach. I can learn to get up and help other because of my experiences. The old says, “If you fall get back up and keep on going.”
Okay, this was yet another LONG blog. There are so many areas of my life right now that I am experiencing trials in. In fact there doesn’t seem to be any area that isn’t being tried so this message was applicable in ways that most people don’t know and that I certainly didn’t get into. For the purpose of this blog I concentrated it all on Dillon and his situation, but am applying it in more ways. I hope this was a blessing to you and might help you through the hard times in your life.
I. Source of adversity
a. God – God allows adversity for His glory. This struck me – I know it is true but sometimes I wonder if there isn’t a better way for God to get glory. I know doesn’t make sense to you – sounds like I am a heathen – but when you are in the midst of the hardest trial of your life it is how you feel, at least I do sometimes. Then he said something about God allows it to help others because when I don’t quite it encourages others. I then saw – there is NO other way for someone else to be encouraged other than by the experience of one Christian continuing on in the midst of a trial. Specific trails are the best. Let me explain that – I know personally if someone tells me they know what I am going thru right now and then their story is “my child always got colds and caughs then they were young.” (that was an exgaeration and not with anyone in particular in mind) I am very put off. Dillon isn’t struggling with colds, this is serious, life-long, life-consuming, minute-by-minute struggle. Although I do know I am not in the worse possible situation with my child as I could be, it certainly isn’t a reoccurring cold. I know that the only people I have found true encouragement in are the ones who have gone through life-treating, long lasting, no end in sight in this world, situations with their child. God IS going to get glory though all the adversity I am facing right now if I let Him, but I also may be the only source of human encouragement to someone else when they are in a similar situation. Will I be an encouragement as an example to follow or will I be an encouragement as an example of “don’t let this turn you into her.”? I don’t remember where this was brought out in the message but it was such a blessing to me. I have been told so many times “God is in control” “God won’t give you more than you can handle”, and “all things work together for good”. I know people mean well, but when you hear it, literally, hundreds of times it loses its meaning. People say it because they don’t know what else to say. I know those things are true, but they are not a comfort – at least not to me. It sounds like an automated response from a “good Christian”. Pastor Trieber said he has a Pastor friend whose 15 year old son died in a car accident. Three years later his dad still could not see any good from the situation. I am sitting here watching my son’s life and saying to all those who casually answer me “all things work together for good…” How? Where? What good is there in my son’s health being robbed from him by a human mistake? His Pastor friend, however, said “I just can’t see any good from this, I just have to live by faith that God will keep His promise.” You all may be sitting there saying; I could have told you that. However, this goes back to my pervious point, sometimes you really need to hear the obvious answer from someone who had gone through something similar to really get it to sink in and not sound cliché. He may not see the good from his son’s death, but God did use him in my life yesterday to help me to just “live by faith that God will keep His promise to me.”
b. Devil – We all know the story of Job. He was tried above what so many of us are capable of understanding and yet it wasn’t because of sin in his life. So many people think severe adversity in a person’s life must mean that they are living in sin. So far I have only had one friend who honestly asked me if it was possible. I can honestly say, after talking with my husband, I know there are things not right in my life, things need to improve. I cannot say though, that I am willing and openly living in sin to which God would punish me through my son’s health. IF that is the case, I would think the sin would be blatant enough that I would clearly know what God was chastening me for. Therefore, it is a possibility the devil is testing me to see if I will turn against God. I can say this, I know I have failed this test so many times in the last eight months. I have turned against God, for short periods of time. I twist the situation in my head and make it sound good – really good – I have quite the imagination – as to why I can be mad at God. I know He is in control and that nothing can happen to me without His permission – therefore He is doing this to me right? He is letting me hurt, letting my heart break as I look at my son’s disabilities, He is causing me to be discouraged by putting all this on my plate at once. He is causing my son to be sick. I know more than anything in this world that God is the One and Only One who can heal my son. I am hopeless, the doctors are hopeless, I would give anything to heal him and yet I can’t. I know the God that spoke a word and the world was made, who spoke a word and the sea clamed, yet no matter how many times I cry until Him – He hasn’t spoken the word to make Dillon whole again. So God is not helping me right? (Again, if you haven’t faced something like this you may not understand how I could think these things against Almighty God- but I am human and I love my sons. These last eight months have been harder than anything I ever imagined.) I have never stay “mad at God” for long, I can’t even when I am mad I have this annoying feeling in the pit of my stomach that won’t go away saying “You know you can’t be mad at God, you know WHO God is and that is all you need to know.” That little voice only adds to my frustration as I try to be mad at God and even in my attempt know I really shouldn’t be. Maybe the devil is trying my husband and I. Josiah has truly been proven faithful through all of this. I don’t remember a single time when he ever allowed himself to blame God for any of this. I have not been so faithful. I need to remember that it could be Satan standing before God saying “See! I told you she would fail You!” What a horrible thought!!! If I can keep that in mind it will help me to not try to place the blame at God’s feet.
c. Sin – I covered this one already. Sorry I think I got ahead of myself, but I am not going to go back and try to sort it out. :-)
II. Sadness of adversity
a. Some spend their life trying to analyze the adversity in their life. Umm can I say guilty! I don’t even know how many times I have replayed the day of his birth in my mind trying to find the answer, trying – in a weird way- to find where I messed up and caused this. I have tried to figure out the how, where, when, and most importantly the why of this situation. I can’t. If I continue my life will be defined by the adversity in it rather than overcoming it.
b.Some spend their life accusing. Ummm I have to say guilty once again! I have accused God, myself, and now in light of new information the health care professionals. Pastor said some people blame God and yet don’t they realize they are breathing HIS air? Oh how true, I am alive because of Him and yet I blame Him? How foolish am I.
c.Some people spend their life in anxiety. Guilty! Notice something not so good going on in my life here? Fear and frustration are big clues to this. I have been terrified since I found out I was pregnant again. I get frustrated almost daily that Dillon isn’t “normal” and worse yet – that the doctors who are making all the money can’t give me any answers as to what to expect in Dillon’s physical/mental future. I am scared of what the future holds for me as well. Will I have to put my son in a home one day? I will spend the rest of my life till the day I die taking care of my son as though he were still an infant? It is selfish I know. I wanted children young, like my parents did, because they are still young and Lord Willing will have so many years left with their children and grandchildren. Yet my child may always be living completely in my care, never learning to smile or laugh, never learning to sit or walk, never learning to care for himself, never even learning to tell me “I love you Momma”. It is selfish, I know, but it is a great fear of mine that I think about for at least a few second almost every day.
d. Some people spend their life in anger. Normally I would say “This one isn’t me”, but this last couple of days it has been me. I have taken my fears out on my poor husband. I have been yelling at him for not comforting me when all he has been doing is telling me what I needed to hear (a lot of it was practically word for word this message!)
III. Success from adversity
a.Some people have learned to accept their adversity. Don’t view it as our enemy but as our friend. It can be the thing that can bring me closer to God.
b. Some people have learned to adapt to it. Adapt or die. That is the bottom line. I have to learn to adapt to it or I am going die and Dillon could literally die if I refuse to adapt. Not only in the literal sense but I will kill us both if all I can do is complain and look at what he can’t do instead of teaching him to be happy with the way God made him to be.
c. Some people have learned to assist others and ascend up. Paul was stoned so badly everyone thought he was dead and yet the Bible says in Acts that “he rose up” and next thing you know he is off on his way to go preach. I can learn to get up and help other because of my experiences. The old says, “If you fall get back up and keep on going.”
Okay, this was yet another LONG blog. There are so many areas of my life right now that I am experiencing trials in. In fact there doesn’t seem to be any area that isn’t being tried so this message was applicable in ways that most people don’t know and that I certainly didn’t get into. For the purpose of this blog I concentrated it all on Dillon and his situation, but am applying it in more ways. I hope this was a blessing to you and might help you through the hard times in your life.
Thursday, February 01, 2007
A big step forward
Well I took a big step for me tonight - I called and found out how to start the process of hiring a nurse for Dillon. As many Mom can imagine this was a hard step for me. Josiah wanted me to do this for a long time but I have been and still am quite against it. I want to be the one taking care of my son, I don't like the idea of having a stranger in my house, let alone a stranger in my house caring for my son. I was given several agencies in the area - all I have to do is call some and see who I like and who would be able to staff me right away. Then I have to have my doctor write a letter of medical necessity. He will have to explain that Dillon is on a feeding pump all night and therefore requires suctioning all night long. I should be able to get a nurse for 8 hours at night so that I can sleep. I told the lady from Unison (Medical Assistance) that I am pregnant the conversation went like this:
Christy: "You're pregnant and Dillon is only going to be one in...June?"
Me: "Yes, June 16th and I am due July 14th."
Christy: "Wow! You really are going to have your hands full!"
Tomorrow I will have to start calling the different agencies as I waited until almost 5 to start these calls. Christy also told me that it might be possible to get help with Si and Dillon's part of the premium once we get insurance and also that if I am restricted because of this pregnancy - it won't be easy - but I should be able to get even more nursing help.
(By the way for all you who are saying "That's great!" that I have taken this step let me just remind you of one thing: there are still a LOT of steps that need to be taken before someone will actually be here to care for my son....heeheeehee IF you get my point! *smiling a mischievous grin!*)
Wednesday, January 31, 2007
EEG
Hello Everyone,
Dillon had an EEG yesterday - of course I don't know the results yet! We were trying to see if he could be kept off of his one seizure drug or if he needs to still be on it. From my untrained eye, I thought his EEG ooked better than when he was in the NICU. Before he had a lot of time were the brain activity lines were nearly flat - I didn't see that this time at all. So as long as the extra activity wasn't a seizure - to me it looked pretty good. I am excited to hear what the doctor will say and will be sure to update you when I get the news.
Yesterday we were told something else interesing. I am not going to go into any details right now becuase we don't know anything for sure. However - it looks like there is a possibility Dillon's heart rate was too low from the moment I got to the hosptial indicating something was wrong from the very begining. This information will be looked into by highly skilled experts to see if this is indeed true. Although this possibility makes me sad and feels like a punch in the stomach (becuase if this is true that means it could have been prevented) it also makes me feel wonderful. I would no longer have to second guess myself for not pushing him out quicker, for allowing my water to be broken, for not telling that I didn't ever have that "urge" to push, and for every other little thing a mom can possibly find to make it her fault. Please pray for wisdom over the next year for the men/women who will be looking into it - that the right decisions be made. Please pray for me as well, as this came as very shocking news - I had no idea that was a possibility and it is a little hard to accept. Up to yesterday all the doctors have told me there was no way to know what happened to Dillon and that there were no warning signs that anything was wrong. While I found this hard to believe - I did believe it. It sure does let me breath a little better for this baby though, we wil know to keep a closer eye on his heart rate the whole time during the labor. (How many of you caught that? HIS heart rate! The ultrasound from the other day shows we are having another little boy!!! I was right in my guess with Dillon but I thought for sure this one was a girl. Good thing I didn't start buying clothes!)
For the first time in over 2 months I got 5 hours of good, solid sleep last night! I was afraid to go back to sleep at 5 am for fear that Dillon would keep waking me up and make me more tired than I was after only 5 hours. I have usually been getting up every 1-2 hours to suction him, but for some reason he slept perfectly quiet until 5 am! Praise the Lord! I needed to be able to sleep good for a change. Even though Si will sometimes let me put ear plugs in and he takes care of Dillon for the night I still wake up to the light or to the sound of the suction machine a couple times. So last night was a treat for me!! 5 hours of no coughing, no heavy struggled breathing, no lights, no suction machine, no getting up and trying to make my eyes focus in on the tip of the suction mactine in order to see what I am actually doing to the poor kid, no tossing and turning....just sleep! :-) Maybe Dillon figures he'll give me at least a few nights like that before his lil bro gets here and they start tag-teaming me! (My dad says they will be in the crib high-fiving each other as they say - "my turn to cough for a while" - "ok now its your turn to cry", my turn, your turn, my turn, your turn all night long!!!) Let's hope not!
Dillon had an EEG yesterday - of course I don't know the results yet! We were trying to see if he could be kept off of his one seizure drug or if he needs to still be on it. From my untrained eye, I thought his EEG ooked better than when he was in the NICU. Before he had a lot of time were the brain activity lines were nearly flat - I didn't see that this time at all. So as long as the extra activity wasn't a seizure - to me it looked pretty good. I am excited to hear what the doctor will say and will be sure to update you when I get the news.
Yesterday we were told something else interesing. I am not going to go into any details right now becuase we don't know anything for sure. However - it looks like there is a possibility Dillon's heart rate was too low from the moment I got to the hosptial indicating something was wrong from the very begining. This information will be looked into by highly skilled experts to see if this is indeed true. Although this possibility makes me sad and feels like a punch in the stomach (becuase if this is true that means it could have been prevented) it also makes me feel wonderful. I would no longer have to second guess myself for not pushing him out quicker, for allowing my water to be broken, for not telling that I didn't ever have that "urge" to push, and for every other little thing a mom can possibly find to make it her fault. Please pray for wisdom over the next year for the men/women who will be looking into it - that the right decisions be made. Please pray for me as well, as this came as very shocking news - I had no idea that was a possibility and it is a little hard to accept. Up to yesterday all the doctors have told me there was no way to know what happened to Dillon and that there were no warning signs that anything was wrong. While I found this hard to believe - I did believe it. It sure does let me breath a little better for this baby though, we wil know to keep a closer eye on his heart rate the whole time during the labor. (How many of you caught that? HIS heart rate! The ultrasound from the other day shows we are having another little boy!!! I was right in my guess with Dillon but I thought for sure this one was a girl. Good thing I didn't start buying clothes!)
For the first time in over 2 months I got 5 hours of good, solid sleep last night! I was afraid to go back to sleep at 5 am for fear that Dillon would keep waking me up and make me more tired than I was after only 5 hours. I have usually been getting up every 1-2 hours to suction him, but for some reason he slept perfectly quiet until 5 am! Praise the Lord! I needed to be able to sleep good for a change. Even though Si will sometimes let me put ear plugs in and he takes care of Dillon for the night I still wake up to the light or to the sound of the suction machine a couple times. So last night was a treat for me!! 5 hours of no coughing, no heavy struggled breathing, no lights, no suction machine, no getting up and trying to make my eyes focus in on the tip of the suction mactine in order to see what I am actually doing to the poor kid, no tossing and turning....just sleep! :-) Maybe Dillon figures he'll give me at least a few nights like that before his lil bro gets here and they start tag-teaming me! (My dad says they will be in the crib high-fiving each other as they say - "my turn to cough for a while" - "ok now its your turn to cry", my turn, your turn, my turn, your turn all night long!!!) Let's hope not!
Thursday, January 25, 2007
Vision Therapy
Just a quick update I thought everyone would like to know... today Dillon had his usual vision therapy. He was trying to ignore us, like usual, but Kelly said it was the best appointment she has ever had with him. We saw him move his eyes independent of his head to the right where the light was. It seemed today as though he was seeing better out of the right fields, which can change day to day. He moved his hands twice today to hit the toy and make noise and lights fo off. I have seen him do this with one toy, but Kelly has not seen this yet. Dillon was looking to the right one time, I was sitting behind him a and to the side, so when I went to use his hands to make a toy light up I used my left hand. Kelly saw his eyes move over to the left where my hand was moving. We tried it again, and he had the same reaction, the third time Dillon said "enough is enough I am not doing that again!" :-) Anyways, he seemed to do very well today with his eyes and thought you would all like to read some encouraging news.
Oh, even though nobody reminded me I did not forget about getting pictures of the light box and the new car seat. I had taken the pictures of the car seat but I can not find my camera cord to put them on the computer. I also have not been able to get a good shot of him with the light box. As soon as I find the cord I will put those on.
Oh, even though nobody reminded me I did not forget about getting pictures of the light box and the new car seat. I had taken the pictures of the car seat but I can not find my camera cord to put them on the computer. I also have not been able to get a good shot of him with the light box. As soon as I find the cord I will put those on.
Vision Therapy
Just a quick update I thought everyone would like to know... today Dillon had his usual vision therapy. He was trying to ignore us, like usual, but Kelly said it was the best appointment she has ever had with him. We saw him move his eyes independent of his head to the right where the light was. It seemed today as though he was seeing better out of the right fields, which can change day to day. He moved his hands twice today to hit the toy and make noise and lights fo off. I have seen him do this with one toy, but Kelly has not seen this yet. Dillon was looking to the right one time, I was sitting behind him a and to the side, so when I went to use his hands to make a toy light up I used my left hand. Kelly saw his eyes move over to the left where my hand was moving. We tried it again, and he had the same reaction, the third time Dillon said "enough is enough I am not doing that again!" :-) Anyways, he seemed to do very well today with his eyes and thought you would all like to read some encouraging news.
Oh, even though nobody reminded me I did not forget about getting pictures of the light box and the new car seat. I had taken the pictures of the car seat but I can not find my camera cord to put them on the computer. I also have not been able to get a good shot of him with the light box. As soon as I find the cord I will put those on.
Oh, even though nobody reminded me I did not forget about getting pictures of the light box and the new car seat. I had taken the pictures of the car seat but I can not find my camera cord to put them on the computer. I also have not been able to get a good shot of him with the light box. As soon as I find the cord I will put those on.
Tuesday, January 16, 2007
Please Read
I got this post from Liz, her blog is Blessed Mommy. I have a link to it on the side, or you can go to http://www.jewelsofjoy.blogspot.com/
This is kind of long, but it is powerful! Please take the time to read it. Please let her words explain what this pregnancy is like for me as a mommy of a special needs boy, please continue to pray for us, and if you don't already know Liz and her family please start praying for them - she has been such an ecouragment to me!
This is kind of long, but it is powerful! Please take the time to read it. Please let her words explain what this pregnancy is like for me as a mommy of a special needs boy, please continue to pray for us, and if you don't already know Liz and her family please start praying for them - she has been such an ecouragment to me!
Friday, January 05, 2007
It has been a while...
I apologize for being "away" for so long....God has been teaching me so much....I have come to the computer to write of all I am going through, to just end up staring blankly, not sure where to begin...so today, while the house is quiet :) I will give it an attempt to share my heart and what I am even still in the midst of learning.
As many of you know, we excitedly welcomed our precios son, Owen into the world in the beginning of November. It was a JOYOUS and happy day for our family! A true answer to prayer for a safe and healthy baby boy....for those of you reading that have had a tramatic experience in regards to pregnancy and baby deliveries, you may slightly understand my heart and explanation of being a bit "on edge" and even fearful at times about how the whole birth day of Owen was going to play out...my husband and I confidently entrusted our precious unborn son's life into the Father's loving hand, but yet, my tender mommy heart still feared...after having Ezzy and going through all that I did as a mommy, GOD alone was the only one that constantly sustained me. In those first days of Ezra's life, people showered us with their love and encouragement through prayers for our family, friends and family flew in, friends from all over the world called and emailed, many visited and hugged...but nothing was more constant and peaceful than KNOWING God was in control and had a plan. I clung to my husband and together we walked through some really dark and scary days...I feel closer to my husband for sure and thank God for the blessings and all that He has taught and continues to teach me as we together raise our precious son Ezra.
So when we found out we were expecting a little one again, our hearts were thrilled, and yet felt a bit guarded about what God had for our future. Finding out we were having a son was "icing" on our cake :) We asked God to be God and His will to be done...and we often had to confidently explain to our girls that we were trusting God to give us the brother that He had planned....the girls were fearful and had questions about what would happen when he was born, Gabby really had a tender heart and we often brought our request before the Lord for a safe baby, but ulitmately, we KNEW God was a GOOD God and He would give us the brother that our family needed. Often, as mommy, I would tuck the girls in and kiss them reassuring them that God knew what was best for our family and that He was in control. Their questions seemed to always come at bedtime. I would find myself reassuring them and as I walked away, baby boy bouncing around in my belly....I would wipe a tear away...a tear that would slip out simply because, I myself had that same questions....what if something happened again??
My husband and I drew close and THANKED God for the blessing of another child. We praised Him for our child and even during times of worry, we KNEW God was in control and chose to bless us with another son. My pregnancy was difficult with added aches and pains than the normal pregnancy...we were busy with caring for Ezzy which required many trips to his doctors 3 hours away...I started homeschooling the girls and I am a wife of a Youth Pastor, need I say more? :) To look at us, you would think we were CRAZY and some stated that we were...ANOTHER baby?? hmmmm. Maybe we ARE crazy, what are we doing Lord???
BUT, I write this to PROCLAIM how GOOD our God truely IS and continues to BE!!! Not to "vent" or whine, but to write how ALL God has taught me....I have sat under His teachings for many years, but with these past few years, I have come away from the desk of life and been in AWE of having the privilege of being HIS student....He has chosen these lessons for me and I am grateful.
So, with all this written thus far, let me share with you exactly where I am going with all this. My "plate" was FULL, my back was aching :) and I was about to have another C-Section surgery that would keep me from doing things I love to do, the biggest one, picking up my son, Ezra. I had to recover,because another repairing surgery was scheduled for me just four weeks after Owen was born. So, time passed and I did heal. With MUCH help from our church and loved ones, we adjusted to life as a family of six and enjoyed every moment of the newness of it all. My second surgery went well and even now with recovering still taking place, we are so THANKFUL for all those who have outpoured love and help towards our family over these past two months!
My HEART was full and overflowing the minute I heard sweet Owen's cry. A sound I did not hear with my Ezzy...feeding Owen and having him LOOK at me with his sweet little eyes was enough to make me sing at the top of my lungs!!! Though I did not cause I was a bit drugged up and knew I would be "off key" :) You get the point! I was THRILLED and praising God experiencing these mommy moments I had taken for granted with the birth of my healthy girls. You see, once Ezzy was born...both my husband and I KNEW we would NEVER be the same. God has chosen us to parent our special boy and with that comes a lot of new territory to learn and discover, a whole new world. The world of stares from bystanders, the world of therapists, the world of lots of driving and early departures, the world of leaving your other kiddos with friends and family as we travel to doctor appointments, the world of emotion and wishing you could take the pain from your son on yourself...I have often told people who just meet Ezra, that I would not change one day of what we have gone through, and honestly I do mean it. We serve a MIGHTY and powerful God and we, Edwin and I, have been in the midst of a miracle!The first morning I was home after having Owen, was a Sunday. Edwin left for church, the three other kids where with my parents, BLESS their hearts! and I was home with my new baby boy. I rolled over in bed and heard Edwin's alarm clock radio on...the story being told caught my attention, so I listened...soon, the tears began to stream...the story was about a mother that had two girls and was about to have a third. When the birth-day of the new sister came, she delieverd a stillborn. The mother was devestated, to say the least and even a bit angry with God...why did this happen? was her hearts cry. After some time of just accepting that she was to be thankful with her two healthy daughters, but still asking God to bless her with another child, if HE so wills, she finds out she is expecting another child....another girl. After her daughter was born, healthy and with no problems...she found herself overwhelmed with JOY and emotion. One day she was leaning over the bed of her newborn daughter and praising God for the blessing of her baby...she asked God, "why have you given her to me, I was so mad and angry at you, why?" She in her heart heard her loving Heavenly Father whisper in her ear, "because I want you to be happy." This mother WAS happy and overjoyed by the LOVE God bestowed upon her...
I cryed when I heard this story, relating with this mother and also clearly seeing all God has planned for me, HIS child. He has lavished HIS perfect love and grace upon me and has brought HEALING to my mommy heart through the birth of Owen. My heart needed healing in areas I did not even know I needed. God lovingly chose to bless us with another son and though at times I feel tore between being happy about all Owen has the ability to do, which makes it clear all that Ezzy can't do, God has shown me that they are different children given to me to teach me different lessons...so, we rejoice and are excited to see Owen developing and growing into the little guy God wants him to be and we likewise rejoice in Ezra's continued development, just as GOD has designed for him.
Having Ezra has brought me in contact of so many hurting families that don't have a God to grasp to in times of trial. My prayer is that I can be a clear light and testimony to God's goodness and grace in our lives and that HE ALONE has a perfect plan...and also blesses us with gifts that bring HEALING and joy to our souls.
It has been weeks of physical healing for my body. I have been limited in what I myself am able to do for my family....very frustrating to a mom and at times overwhelming. BUT good and a true GIFT from God...because of my slower pace of life and putting on the brakes of our schedule, I have been able to see God's hand in planning this time of "be still and know that I am God..." I have had to be still... hard, oh so hard for me! I have had to have others help me in areas I just want to do myself! I have had to depend on others to care for Ezzy when I so just want to do it myself! Maybe you don't struggle with wanting complete control and independence, but I evidently do and God is showing me that I need HIM and the others He has brought into my life to HELP me and BLESS me.
So often I can be happy and loving life, but then something happens that changes plans and I am faced with how I will respond....God has shown me that, "man makes his own plans, but GOD directs his steps..." GOD ulitmately WILL have His way and more easily if I am a willing vessel. The lessons I have learned so far, and I know there are more to come :), are that God is a giver of GIFTS and a HEALER of the heart...He bestows blessings upon me and delights my heart with the journey He has chosen for me...so BECAUSE of this "teaching time" I have had to give over so much, (my independence, my control), I have RECIEVED even MORE and am thankful beyond measure...
It is interesting that we just enjoyed the Christmas season...because during this time we do GIVE and RECEIVE...I have had to, just not in the traditional way of presents, but yet in a heart way towards my Heavenly Father. I have had to GIVE over my own ways and be blessed when I RECEIVE all God has planned for me.I truely AM a blessed mommy.
Thank you Father for the blessing of Your plans for me. Thank you for your Word that refreshes my soul and instructs me in my daily life. I PRAISE you for blessing me with my children; each one created by YOU and designed by your loving Hand. May I continue to be a student of Your Word and learn all You have planned for me. I thank You for the weeks of recovery that have allowed me to, "be STILL and KNOW You are God..."
You are my treasure and I delight in YOU.
It has been a while...
I apologize for being "away" for so long....God has been teaching me so much....I have come to the computer to write of all I am going through, to just end up staring blankly, not sure where to begin...so today, while the house is quiet :) I will give it an attempt to share my heart and what I am even still in the midst of learning.
As many of you know, we excitedly welcomed our precios son, Owen into the world in the beginning of November. It was a JOYOUS and happy day for our family! A true answer to prayer for a safe and healthy baby boy....for those of you reading that have had a tramatic experience in regards to pregnancy and baby deliveries, you may slightly understand my heart and explanation of being a bit "on edge" and even fearful at times about how the whole birth day of Owen was going to play out...my husband and I confidently entrusted our precious unborn son's life into the Father's loving hand, but yet, my tender mommy heart still feared...after having Ezzy and going through all that I did as a mommy, GOD alone was the only one that constantly sustained me. In those first days of Ezra's life, people showered us with their love and encouragement through prayers for our family, friends and family flew in, friends from all over the world called and emailed, many visited and hugged...but nothing was more constant and peaceful than KNOWING God was in control and had a plan. I clung to my husband and together we walked through some really dark and scary days...I feel closer to my husband for sure and thank God for the blessings and all that He has taught and continues to teach me as we together raise our precious son Ezra.
So when we found out we were expecting a little one again, our hearts were thrilled, and yet felt a bit guarded about what God had for our future. Finding out we were having a son was "icing" on our cake :) We asked God to be God and His will to be done...and we often had to confidently explain to our girls that we were trusting God to give us the brother that He had planned....the girls were fearful and had questions about what would happen when he was born, Gabby really had a tender heart and we often brought our request before the Lord for a safe baby, but ulitmately, we KNEW God was a GOOD God and He would give us the brother that our family needed. Often, as mommy, I would tuck the girls in and kiss them reassuring them that God knew what was best for our family and that He was in control. Their questions seemed to always come at bedtime. I would find myself reassuring them and as I walked away, baby boy bouncing around in my belly....I would wipe a tear away...a tear that would slip out simply because, I myself had that same questions....what if something happened again??
My husband and I drew close and THANKED God for the blessing of another child. We praised Him for our child and even during times of worry, we KNEW God was in control and chose to bless us with another son. My pregnancy was difficult with added aches and pains than the normal pregnancy...we were busy with caring for Ezzy which required many trips to his doctors 3 hours away...I started homeschooling the girls and I am a wife of a Youth Pastor, need I say more? :) To look at us, you would think we were CRAZY and some stated that we were...ANOTHER baby?? hmmmm. Maybe we ARE crazy, what are we doing Lord???
BUT, I write this to PROCLAIM how GOOD our God truely IS and continues to BE!!! Not to "vent" or whine, but to write how ALL God has taught me....I have sat under His teachings for many years, but with these past few years, I have come away from the desk of life and been in AWE of having the privilege of being HIS student....He has chosen these lessons for me and I am grateful.
So, with all this written thus far, let me share with you exactly where I am going with all this. My "plate" was FULL, my back was aching :) and I was about to have another C-Section surgery that would keep me from doing things I love to do, the biggest one, picking up my son, Ezra. I had to recover,because another repairing surgery was scheduled for me just four weeks after Owen was born. So, time passed and I did heal. With MUCH help from our church and loved ones, we adjusted to life as a family of six and enjoyed every moment of the newness of it all. My second surgery went well and even now with recovering still taking place, we are so THANKFUL for all those who have outpoured love and help towards our family over these past two months!
My HEART was full and overflowing the minute I heard sweet Owen's cry. A sound I did not hear with my Ezzy...feeding Owen and having him LOOK at me with his sweet little eyes was enough to make me sing at the top of my lungs!!! Though I did not cause I was a bit drugged up and knew I would be "off key" :) You get the point! I was THRILLED and praising God experiencing these mommy moments I had taken for granted with the birth of my healthy girls. You see, once Ezzy was born...both my husband and I KNEW we would NEVER be the same. God has chosen us to parent our special boy and with that comes a lot of new territory to learn and discover, a whole new world. The world of stares from bystanders, the world of therapists, the world of lots of driving and early departures, the world of leaving your other kiddos with friends and family as we travel to doctor appointments, the world of emotion and wishing you could take the pain from your son on yourself...I have often told people who just meet Ezra, that I would not change one day of what we have gone through, and honestly I do mean it. We serve a MIGHTY and powerful God and we, Edwin and I, have been in the midst of a miracle!The first morning I was home after having Owen, was a Sunday. Edwin left for church, the three other kids where with my parents, BLESS their hearts! and I was home with my new baby boy. I rolled over in bed and heard Edwin's alarm clock radio on...the story being told caught my attention, so I listened...soon, the tears began to stream...the story was about a mother that had two girls and was about to have a third. When the birth-day of the new sister came, she delieverd a stillborn. The mother was devestated, to say the least and even a bit angry with God...why did this happen? was her hearts cry. After some time of just accepting that she was to be thankful with her two healthy daughters, but still asking God to bless her with another child, if HE so wills, she finds out she is expecting another child....another girl. After her daughter was born, healthy and with no problems...she found herself overwhelmed with JOY and emotion. One day she was leaning over the bed of her newborn daughter and praising God for the blessing of her baby...she asked God, "why have you given her to me, I was so mad and angry at you, why?" She in her heart heard her loving Heavenly Father whisper in her ear, "because I want you to be happy." This mother WAS happy and overjoyed by the LOVE God bestowed upon her...
I cryed when I heard this story, relating with this mother and also clearly seeing all God has planned for me, HIS child. He has lavished HIS perfect love and grace upon me and has brought HEALING to my mommy heart through the birth of Owen. My heart needed healing in areas I did not even know I needed. God lovingly chose to bless us with another son and though at times I feel tore between being happy about all Owen has the ability to do, which makes it clear all that Ezzy can't do, God has shown me that they are different children given to me to teach me different lessons...so, we rejoice and are excited to see Owen developing and growing into the little guy God wants him to be and we likewise rejoice in Ezra's continued development, just as GOD has designed for him.
Having Ezra has brought me in contact of so many hurting families that don't have a God to grasp to in times of trial. My prayer is that I can be a clear light and testimony to God's goodness and grace in our lives and that HE ALONE has a perfect plan...and also blesses us with gifts that bring HEALING and joy to our souls.
It has been weeks of physical healing for my body. I have been limited in what I myself am able to do for my family....very frustrating to a mom and at times overwhelming. BUT good and a true GIFT from God...because of my slower pace of life and putting on the brakes of our schedule, I have been able to see God's hand in planning this time of "be still and know that I am God..." I have had to be still... hard, oh so hard for me! I have had to have others help me in areas I just want to do myself! I have had to depend on others to care for Ezzy when I so just want to do it myself! Maybe you don't struggle with wanting complete control and independence, but I evidently do and God is showing me that I need HIM and the others He has brought into my life to HELP me and BLESS me.
So often I can be happy and loving life, but then something happens that changes plans and I am faced with how I will respond....God has shown me that, "man makes his own plans, but GOD directs his steps..." GOD ulitmately WILL have His way and more easily if I am a willing vessel. The lessons I have learned so far, and I know there are more to come :), are that God is a giver of GIFTS and a HEALER of the heart...He bestows blessings upon me and delights my heart with the journey He has chosen for me...so BECAUSE of this "teaching time" I have had to give over so much, (my independence, my control), I have RECIEVED even MORE and am thankful beyond measure...
It is interesting that we just enjoyed the Christmas season...because during this time we do GIVE and RECEIVE...I have had to, just not in the traditional way of presents, but yet in a heart way towards my Heavenly Father. I have had to GIVE over my own ways and be blessed when I RECEIVE all God has planned for me.I truely AM a blessed mommy.
Thank you Father for the blessing of Your plans for me. Thank you for your Word that refreshes my soul and instructs me in my daily life. I PRAISE you for blessing me with my children; each one created by YOU and designed by your loving Hand. May I continue to be a student of Your Word and learn all You have planned for me. I thank You for the weeks of recovery that have allowed me to, "be STILL and KNOW You are God..."
You are my treasure and I delight in YOU.
Thank you for posting this Liz!
Sunday, January 14, 2007
My Little Boy is growing up!
This morning was Dillon's first time being left in nursery! My little boy is only 2 days away from being 7 months old and I finally left him in nursery without me!! I am going to start leaving him in there more since we will need to once the other baby arrives. Mrs. R has taken care of him for me before and she said she didn't mind watching him during service. Josiah commented that it was so nice not to have to worry about getting up during the service to suction him. Most of the time Dillon only coughs a lot during the morning service so for now, I think that is the only service I will leave him in nursery.
Saturday, January 13, 2007
My lil Peanut
Dillon had a doctor’s appointment on Monday and we learned he has lost 1 lb 2 oz since the month before. I am sure it is due to the new medicine we was put on for the seizures as a side effect is weight loss so much so that the makers wanted to market it under a different name as a diet pill. Josiah and I took him today for another weight check and he has gained 4 oz since Monday - some of this may be the difference in how long it was since his last meal but at least he didn't drop or even stay the same! I have started giving him 1/2 teaspoon of flax seed oil a day and will start fish oil (without mercury) as soon as it comes in. The flax seed oil is wonderful for many things - I read of a study done in Canada of women with breast cancer. The women who had chemo had worse outcomes than women who all they did was eat a muffin a day containing flax seed oil. If you don't take it you should! The fish oil is similar, I have heard of many good things with this especially concerning the brain. Plus these are extra calories in a concentrated form which is a major benefit right now! :-)
We now have a light box for Dillon. I have fun playing with him with it because I am SURE he is seeing something! I don't know how much, but the therapist agrees with me. The reason we think this is Dillon will sometimes move his eyes when the lights/patterns are turned on and will often blink. Plus the Physical therapist says Dillon doesn't try to hold his head up when in a sitting position unless I am reflecting light into his face. Please keep praying - I believe I am seeing small improvements and as long as Dillon keeps making small steps it is great!
We are looking about getting him a chair that will support him during speech and vision therapy, but he is still so small. Also, we are looking into a bath chair so that Dillon can still be in lots of water, but I won't have to worry about him slipping under. If you want to take the time to look at our options here they are:
Other than this - not too much has happened. Hope you all are having a great week. Oh, thank you to everyone that expressed your congratulations about our upcoming bundle of joy! I will try to get pictures this week of Dillon and his light box since it is hard to describe. If I don't get them on by Thursday someone post a comment and remind me!!
We now have a light box for Dillon. I have fun playing with him with it because I am SURE he is seeing something! I don't know how much, but the therapist agrees with me. The reason we think this is Dillon will sometimes move his eyes when the lights/patterns are turned on and will often blink. Plus the Physical therapist says Dillon doesn't try to hold his head up when in a sitting position unless I am reflecting light into his face. Please keep praying - I believe I am seeing small improvements and as long as Dillon keeps making small steps it is great!
We are looking about getting him a chair that will support him during speech and vision therapy, but he is still so small. Also, we are looking into a bath chair so that Dillon can still be in lots of water, but I won't have to worry about him slipping under. If you want to take the time to look at our options here they are:
BATH CHAIRS:
1. Manatee Bath Chair http://www.adaptivemall.com/mabasesi0.html
2. Leckey Advance Bath Chair Size 1 http://www.adaptivemall.com/lecadbatseat1.html FEEDING CHAIRS:
1. Special Tomato Soft-Touch Sitter Mobile Tilt Wedge Kit Size 1 http://www.adaptivemall.com/sosimotiweki1.html
2. Leckey Easy Seat Size 1 http://www.adaptivemall.com/leceasseatsi.html
Other than this - not too much has happened. Hope you all are having a great week. Oh, thank you to everyone that expressed your congratulations about our upcoming bundle of joy! I will try to get pictures this week of Dillon and his light box since it is hard to describe. If I don't get them on by Thursday someone post a comment and remind me!!
Saturday, January 06, 2007
Dillon’s First Christmas
The Saturday before Christmas, we went to WV to visit Josiah’s parents, brothers, and sister. On Christmas evening, my parents also came to WV – so as you can imagine this little boy was spoiled!
The medicine Dillon was put on seems to have stopped the seizures; however he was having some side effects. Since it makes it so that you cannot sweat, his body was over heating but his legs and arms were cold. With the doctor’s permission, we lowered the dose to half of what he was getting and this seemed to have stopped most of the problem. Occasionally, Dillon will still get an arm or a leg that turns red and gets hot, but even that seems to have come to an end. I have lowered the other medicine Dillon is on and he is so much more alert. A couple nights ago he was hitting the buttons on the toy he has to make it play music!
Back to Christmas time – One of the nights Josiah and I went ice skating alone since we had so many babysitters. When we got back my poor little boy had been put thru a photo shoot! Grandparents! J My parents left Wednesday morning and we the rest of us left later in the day to go to Pittsburg to see all of Dad Kuenzi’s family. Josiah, Hannah, Dillon and I left there about 11 pm to come back to Allentown. We arrived around 4 am and slept in nice and late. Later in the day, Mom and Dad Kuenzi arrived and then even later Daniel, Ezra, and Gina arrived. (They picked Gina up from the Philly airport). The next day all of us 24 and under – except Dillon – went to New York City for the day. Unbeknownst to Gina, Ezra planned to ask her to marry him there. Shortly after arriving Ez and Gina went off by themselves and the 4 of us went to Rockefeller Center and saw many things. While in the mall we looked up at the ice skating rink and saw Ez and Gina – we later found out we just missed seeing him purpose to her by minutes! We all met at the car around 8:30pm or so and went home. The next day we went to a couple touristy things in the area, it was a lot of fun. Mom and Dad left Sunday afternoon, as mom had to work Monday morning and the rest of them left the next morning.
It was a good Christmas! Dillon loved the Christmas carols we sang as Daddy played the piano. We didn’t have our camera as we were waiting for a new one to come in the mail since the last one we had was a horrible model, so all of my pictures of Christmas are from the grandparents. Our camera arrived as soon as we got home from WV. As you can see in the pictures, it looks as though Dillon is getting skinnier again. The truth is that he is getting longer! He is 27 inches and only 11.5 pounds! The poor dude literally cannot keep his pants up! Oh, well. I guess it just makes it easier to carry him.
St. Christopher’s Hosptial is trying to charge us $53,000 for Dillon’s bills. This means, based on their payment plan that we have to pay 987 per month for the next five years. However, I am trying to get the proper contact from the state as I am pretty sure the law says they can NOT charge me anything other than what insurance agrees to pays. This would be a HUGE blessing! Please pray we get that figured out soon. The supervisor of Dillon’s medical assistance case worker told me NOT to pay anything until we get it worked out and if I am afraid they are going to send it to collections only pay $0.05 or maybe $1.00. She said although they tell me I have to pay a minimum the truth is as long as I pay a nickel every month they can NOT send us to collections. This is a blessing because the man in our church who is working to help us was basically told we have to pay the 987 a month or go bankrupt. Please keep our medical bills in prayer; it will be much easier once we don’t have to worry about these any more.
Everyone that knows us in person (aka everyone other than the people who know me only by my blog) knows that Dillon is excited to announce that he is a big brother! This baby was not planned at all, but God is in control and must have a plan. This baby is due July 14, not even a full month after Dillon’s first birthday. We did not make a big announcement; we just told people slowly which is why I am just now saying something on my blog. I was terrified at first, but now I am just praying for strength (both now as I have been sick and tired a lot) and for when the baby comes and I am also praying that this baby will challenge Dillon and help him to develop. I can’t see why God would add this to our plate right now for any other reason, but He does have his reasons. Please pray for the health of this baby and myself and that God’s plan would be done concerning this baby and Dillon. Thank you!
Well that is LONG enough! (Abbi – you asked for a Christmas update – are you sorry you asked now? LOL)
The medicine Dillon was put on seems to have stopped the seizures; however he was having some side effects. Since it makes it so that you cannot sweat, his body was over heating but his legs and arms were cold. With the doctor’s permission, we lowered the dose to half of what he was getting and this seemed to have stopped most of the problem. Occasionally, Dillon will still get an arm or a leg that turns red and gets hot, but even that seems to have come to an end. I have lowered the other medicine Dillon is on and he is so much more alert. A couple nights ago he was hitting the buttons on the toy he has to make it play music!
Back to Christmas time – One of the nights Josiah and I went ice skating alone since we had so many babysitters. When we got back my poor little boy had been put thru a photo shoot! Grandparents! J My parents left Wednesday morning and we the rest of us left later in the day to go to Pittsburg to see all of Dad Kuenzi’s family. Josiah, Hannah, Dillon and I left there about 11 pm to come back to Allentown. We arrived around 4 am and slept in nice and late. Later in the day, Mom and Dad Kuenzi arrived and then even later Daniel, Ezra, and Gina arrived. (They picked Gina up from the Philly airport). The next day all of us 24 and under – except Dillon – went to New York City for the day. Unbeknownst to Gina, Ezra planned to ask her to marry him there. Shortly after arriving Ez and Gina went off by themselves and the 4 of us went to Rockefeller Center and saw many things. While in the mall we looked up at the ice skating rink and saw Ez and Gina – we later found out we just missed seeing him purpose to her by minutes! We all met at the car around 8:30pm or so and went home. The next day we went to a couple touristy things in the area, it was a lot of fun. Mom and Dad left Sunday afternoon, as mom had to work Monday morning and the rest of them left the next morning.
It was a good Christmas! Dillon loved the Christmas carols we sang as Daddy played the piano. We didn’t have our camera as we were waiting for a new one to come in the mail since the last one we had was a horrible model, so all of my pictures of Christmas are from the grandparents. Our camera arrived as soon as we got home from WV. As you can see in the pictures, it looks as though Dillon is getting skinnier again. The truth is that he is getting longer! He is 27 inches and only 11.5 pounds! The poor dude literally cannot keep his pants up! Oh, well. I guess it just makes it easier to carry him.
St. Christopher’s Hosptial is trying to charge us $53,000 for Dillon’s bills. This means, based on their payment plan that we have to pay 987 per month for the next five years. However, I am trying to get the proper contact from the state as I am pretty sure the law says they can NOT charge me anything other than what insurance agrees to pays. This would be a HUGE blessing! Please pray we get that figured out soon. The supervisor of Dillon’s medical assistance case worker told me NOT to pay anything until we get it worked out and if I am afraid they are going to send it to collections only pay $0.05 or maybe $1.00. She said although they tell me I have to pay a minimum the truth is as long as I pay a nickel every month they can NOT send us to collections. This is a blessing because the man in our church who is working to help us was basically told we have to pay the 987 a month or go bankrupt. Please keep our medical bills in prayer; it will be much easier once we don’t have to worry about these any more.
Everyone that knows us in person (aka everyone other than the people who know me only by my blog) knows that Dillon is excited to announce that he is a big brother! This baby was not planned at all, but God is in control and must have a plan. This baby is due July 14, not even a full month after Dillon’s first birthday. We did not make a big announcement; we just told people slowly which is why I am just now saying something on my blog. I was terrified at first, but now I am just praying for strength (both now as I have been sick and tired a lot) and for when the baby comes and I am also praying that this baby will challenge Dillon and help him to develop. I can’t see why God would add this to our plate right now for any other reason, but He does have his reasons. Please pray for the health of this baby and myself and that God’s plan would be done concerning this baby and Dillon. Thank you!
Well that is LONG enough! (Abbi – you asked for a Christmas update – are you sorry you asked now? LOL)
Hope eyerone had a wonderful Christmas as well.
PICTURES CAN BE SEEN AT:
http://www.flickr.com/photos/70543163@N00/
PICTURES CAN BE SEEN AT:
http://www.flickr.com/photos/70543163@N00/
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