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?
Wednesday, August 30, 2006
Tuesday, August 29, 2006
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:
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.
Monday, August 28, 2006
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:
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 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.
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.
Saturday, August 26, 2006
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!
Friday, August 25, 2006
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...
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!!
Tuesday, August 22, 2006
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.
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.
Saturday, August 12, 2006
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!!
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!!
Friday, August 11, 2006
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.
Wednesday, August 09, 2006
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!!
Tuesday, August 08, 2006
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
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
Monday, August 07, 2006
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.
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.
Sunday, August 06, 2006
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!
Friday, August 04, 2006
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!
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!
Thursday, August 03, 2006
Kuenzi Family
Wednesday, August 02, 2006
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!
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?
Tuesday, August 01, 2006
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!
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,
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,
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,
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
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
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
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