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!
Wednesday, January 31, 2007
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/
Friday, December 15, 2006
Happy Birthday Dear!
Yesterday was my husby's 24th birthday. I made him roast, potatoes, and carrots for dinner then we took Dillon to a couple in our church for them to babysit him for a few hours. Josiah and I went to a theatrical production of "A Christmas Carol" in Allentown. It was very good and it was nice to get away for a little bit. On the way back to get Dillon I really wanted a hot fudge sundae from McD so we got cheeseburgers and ice cream and ate it on the way.
Dillon only had 1 big seizure (10 minutes) and maybe 2 little ones yesterday but so far today he had one at 2 am, 5 am, and 1 pm (none of which seemed to last more than a couple of minutes). The biochemist said since we are seeing improvement he is pretty sure it is working that we just need to give it more time to fully kick in. This makes sense as I have been told natural things can take up to six weeks to take full effect. Natural medicine is not as harsh as the drugs which are therefore "effective" more quickly.
Please continue to pray that the seizure will stop - SOON! I was feeling so excited yesterday that he made such improvement but today I am a little down again since he has had a few more. I guess it could be a bit of a roller coaster until it takes full effect. Also, it may be a little early to start worrying about this but: please pray for full cooperation from the neurologist when I tell him what he have been doing. If this stuff works - I will want to try to lower the drugs he is on so please start praying that the doctor will be understanding to this.
Dillon only had 1 big seizure (10 minutes) and maybe 2 little ones yesterday but so far today he had one at 2 am, 5 am, and 1 pm (none of which seemed to last more than a couple of minutes). The biochemist said since we are seeing improvement he is pretty sure it is working that we just need to give it more time to fully kick in. This makes sense as I have been told natural things can take up to six weeks to take full effect. Natural medicine is not as harsh as the drugs which are therefore "effective" more quickly.
Please continue to pray that the seizure will stop - SOON! I was feeling so excited yesterday that he made such improvement but today I am a little down again since he has had a few more. I guess it could be a bit of a roller coaster until it takes full effect. Also, it may be a little early to start worrying about this but: please pray for full cooperation from the neurologist when I tell him what he have been doing. If this stuff works - I will want to try to lower the drugs he is on so please start praying that the doctor will be understanding to this.
Monday, December 11, 2006
I didn't forget about Blogger....
Wow! It has been a LONG time since I last posted. I am sorry to any one who looked for updates and they haven't been there. I might miss some things since I am trying to cover so much in this blog.
1. Dillon's hearing aids are doing well. He seems to be able to hear with them. I have seen him turn to my voice a few times but mostly we have seen reactions in his hands and face to know that he hears. He seems to like music - especially kid songs like I was playing for him this morning.
2. My parents came for a visit. It was so nice having them here. My mom helped with cleaning and keeping me company and my dad made meals, washed dishes, ran errands, etc. They were a big help.
3. Thanksgiving was nice. We went to Boston to see Dillon's Great Great Grandparents (that is not a typo they are his great-great grandparents.) It was a lot of fun. Dillon liked sitting on Grandpa's lap for hours while he talked to him - Dillon even started talking back a lot. I think he enjoyed all the attention.
4. We have new hearing aid molds for Dillon and he gets a new pair on Dec 20 when he goes for another hearing test. It is amazing how much difference there is in the size of his ear!
5. The eye doctor in Philly (at a special eye center) said that Dillon IS responding to light. At first he didn't even do this. However, most blind people do have some degree of light perception so this does not mean he is seeing. It does mean, however, that he is making some progress.
6. Since Wed. Dec 6 Dillon has been having seizures. They think they let him out grow the medicine. He was only 7-8 pounds when they put him on Keppra and as of Thursday he is 11 lbs 6 oz. We took him to the ER on Friday, they gave him an IV with Dilantin (sp?) and increased the keppra even more. He has still been having them but they don't last as long and don't seem to be as strong. (We know he is having one because he pulls his arms into his chest very tight then relaxes and does this for 4-8 minutes and then stops. He also turns his head to the right every time his arms come in. I can hold him but I cannot try to stop the movement as that can cause more damage to his body.) Needless to say it has been a very hard couple of days - I never would have imagined how hard it is to watch your precious little boy go through seizure after seizure and be told by doctors "There's nothing you can do you just have to wait them out." HA! I would like to know if any of them have ever had to do this!
7. Josiah isn't working two jobs anymore the night one fired him for KISSING ME. Yeah you read that right they actually fired him for kissing his wife when I came to see him one night - is that not stupid? I told Josiah that he wouldn't have been fired for kissing another guy because that is be intolerant but for kissing his own WIFE that is grounds for dismissal. What is our world coming to!?!? Instead he is working 12 hours a day at his other job. This might be better as he can start at 7 and come home then at 7pm.
8. Well I am sure that is not all – but that is all that I am going to write for now.
1. Dillon's hearing aids are doing well. He seems to be able to hear with them. I have seen him turn to my voice a few times but mostly we have seen reactions in his hands and face to know that he hears. He seems to like music - especially kid songs like I was playing for him this morning.
2. My parents came for a visit. It was so nice having them here. My mom helped with cleaning and keeping me company and my dad made meals, washed dishes, ran errands, etc. They were a big help.
3. Thanksgiving was nice. We went to Boston to see Dillon's Great Great Grandparents (that is not a typo they are his great-great grandparents.) It was a lot of fun. Dillon liked sitting on Grandpa's lap for hours while he talked to him - Dillon even started talking back a lot. I think he enjoyed all the attention.
4. We have new hearing aid molds for Dillon and he gets a new pair on Dec 20 when he goes for another hearing test. It is amazing how much difference there is in the size of his ear!
5. The eye doctor in Philly (at a special eye center) said that Dillon IS responding to light. At first he didn't even do this. However, most blind people do have some degree of light perception so this does not mean he is seeing. It does mean, however, that he is making some progress.
6. Since Wed. Dec 6 Dillon has been having seizures. They think they let him out grow the medicine. He was only 7-8 pounds when they put him on Keppra and as of Thursday he is 11 lbs 6 oz. We took him to the ER on Friday, they gave him an IV with Dilantin (sp?) and increased the keppra even more. He has still been having them but they don't last as long and don't seem to be as strong. (We know he is having one because he pulls his arms into his chest very tight then relaxes and does this for 4-8 minutes and then stops. He also turns his head to the right every time his arms come in. I can hold him but I cannot try to stop the movement as that can cause more damage to his body.) Needless to say it has been a very hard couple of days - I never would have imagined how hard it is to watch your precious little boy go through seizure after seizure and be told by doctors "There's nothing you can do you just have to wait them out." HA! I would like to know if any of them have ever had to do this!
7. Josiah isn't working two jobs anymore the night one fired him for KISSING ME. Yeah you read that right they actually fired him for kissing his wife when I came to see him one night - is that not stupid? I told Josiah that he wouldn't have been fired for kissing another guy because that is be intolerant but for kissing his own WIFE that is grounds for dismissal. What is our world coming to!?!? Instead he is working 12 hours a day at his other job. This might be better as he can start at 7 and come home then at 7pm.
8. Well I am sure that is not all – but that is all that I am going to write for now.
Tuesday, November 07, 2006
Mommy and Me activity?
At first I thought Dillon wanted a weekly Mommy and Me activity since for three weeks in a row, once a week we have had a trip to either the ER or the hospital. Then I got thinking - I am with Dillon 24/7 so in truth Dillon is getting bored with me and enjoys the friend that I bring with me whenever we have to go!
After the first week of the G tube falling out, next came getting sick. Dillon's temperature kept getting up to 101.9 so the doctor's office said to take him in. After an X-ray they decided it is just a cold give him Tylenol. Great - except even with the Tylenol two days later it got to 103.0 so in to the doctor we went. He put Dillon on an antibiotic to clear anything in his lungs up. Ok, so then after that Dillon did this thing three times in two days where the milk would pour out of his mouth. He should not be able to have anything up from his stomach. This leads us to yesterday, our trip to St. Christopher's. I watched as they did the upper GI on him and it was amazing. At 90ml, or three ounces, (Dillon should be getting 120ml at a time) I saw it go flying up his throat choking him. He then coughed it out for the next hour or so. I thought for sure this meant surgery, but PRAISE THE LORD no surgery! We just have to change Dillon eating a little. He will get much smaller meals during the day and be on a kangaroo pump at night. This will feed him 45ml every hour for 9 hours. I adjusted this schedule from what she had told me, but it doesn't matter as long as he gets all his food in during the day and can handle it. Today - Dillon did wonderful for the PT. He was on his tummy on the floor and lifting his head for her. Deb said she does see this in kids, if they have reflux they don’t like lifting their head because it puts too much pressure on their belly. Maybe this is why Dillon did better today - his tummy wasn't hurting him.
FRIDAY IS THE BIG DAY! I am looking forward to getting his hearing aids! I found an herb treatment that may help his ears though; I will include this later on if I decide for sure to do it.
After the first week of the G tube falling out, next came getting sick. Dillon's temperature kept getting up to 101.9 so the doctor's office said to take him in. After an X-ray they decided it is just a cold give him Tylenol. Great - except even with the Tylenol two days later it got to 103.0 so in to the doctor we went. He put Dillon on an antibiotic to clear anything in his lungs up. Ok, so then after that Dillon did this thing three times in two days where the milk would pour out of his mouth. He should not be able to have anything up from his stomach. This leads us to yesterday, our trip to St. Christopher's. I watched as they did the upper GI on him and it was amazing. At 90ml, or three ounces, (Dillon should be getting 120ml at a time) I saw it go flying up his throat choking him. He then coughed it out for the next hour or so. I thought for sure this meant surgery, but PRAISE THE LORD no surgery! We just have to change Dillon eating a little. He will get much smaller meals during the day and be on a kangaroo pump at night. This will feed him 45ml every hour for 9 hours. I adjusted this schedule from what she had told me, but it doesn't matter as long as he gets all his food in during the day and can handle it. Today - Dillon did wonderful for the PT. He was on his tummy on the floor and lifting his head for her. Deb said she does see this in kids, if they have reflux they don’t like lifting their head because it puts too much pressure on their belly. Maybe this is why Dillon did better today - his tummy wasn't hurting him.
FRIDAY IS THE BIG DAY! I am looking forward to getting his hearing aids! I found an herb treatment that may help his ears though; I will include this later on if I decide for sure to do it.
Saturday, October 28, 2006
My mom's birthday was the 26th (Happy Birthday!) so on the 25th when Dillon did very well for the therapist she said it was the best birthday present Dillon could have given her. The Physical Therapist, Deb, said she only felt Dillon trying to lift his head if I was shining a red light on his face. When I turned the light off Deb didn't feel Dillon trying as hard. I took the light to Dillon's right and his eyes quickly caught up with it and then his head even turned a little! We couldn't get him to do it the other way. It is possible the right field of vision is better for him, or that he just didn't feel like doing it again, and it is even possible that he didn't mean to do it - but for now we will take it as good news. Then the Speech Therapist, Karen, said she is pretty sure she is seeing him swallow sometimes!!! We can't be sure though, all we are going on is looking at his throat and seeing if it moves at all. We think we see it! She is going to talk to her friend who does swallow studies to see if in a few weeks if we can get Dillon in so we can be sure one way or the other. What a blessing to have these pieces of good news! God is still working in Dillon's little body. Maybe He will use the decreased medicine to bring about a lot of changes in him. Dillon is now only on Keppra, but it will take about another week for the phen. To be out of his body.
Josiah started his second job on Tuesday. He leaves the house at 8:30am I take him up dinner and get to see him from about 5:30-6:00pm then he comes home at 2:15am. This should only last for 6-9 months, Lord Willing. I miss him very much, but we both know we need for him to do this right now. We need to get out of debt then we should be fine.
We were in special meeting this week with Bro. Milton Martin. He spoke a lot about the churches in South America that are a product from his ministry. There are over 300 churches that have been started out of his work there. Praise God! These churches were always self-supporting and reproducing! Thursday night he spoke on truly believing in prayer. Do we? Do you? Do you really believe that if you gather together and pray for the church service or for a person salvation that God will bring it to pass? I think we all are lacking in this area. Bro Martin also pointed out how so often we pray for physical needs and not spiritual. Will you pray for the health and even life of a person and forget to pray for salvation? I know I do. I pray nonstop for Dillon's health needs, but I have given up on believing Dillon will ever be capable of making the decision to get saved. What if I am wrong - what if God heals him and he one day needs to make that decision...Will I wonder if my lack of prayer for him played a part in him dying and going to Hell? What about your family, do you pray when they are sick and forget to pray for soul? Or do we remember, but have such little faith that God will save them that it seems like a waste of time to pray?
Thursday night I got home from church and went downstairs to pump for Dillon, eat ice cream then get a shower and give Dillon a bath. Wow, did my night change! I put Dillon down on my bed and had his feeding tube in my mouth as he was just finishing his meal. The whole Mic Key button popped right out of his tummy! I was on speaker phone with my mom when it happened. I started to panic, I knew this could happen but it was the first time that it did and I was so scared. I didn't know if I had hurt him or not, I was shaking so bad that after four attempts to put it back in (like the doctors had told me to do) I just gathered him up as quickly as I could, tossed him in the car, put my four-ways on and drove as fast as I could to the ER. I went to a place that is much cheaper and only .2 miles further than the main hospital and they said they couldn't do it so I rushed him into the major hospital's ER, Lehigh Valley Hospital. I sat there for about 10 minutes until the nurse called me back to check his temperature, blood pressure, etc. She asked about his breathing being so heavy, this is normal for him though. She also asked what his blood oxygen normally is, I told her 92-100 it was 92-93 so it was good. I showed her the discharge papers from St. Chris when she asked about his medical history. I even showed her that I had a new Mic Key button for them already. I told her everything! I even told her his diagnosis - every detail I could. I asked how long it will take before it starts to close up - she told me it would be hours before that would happen. So after being there an hour I went up and asked how much longer, they basically ignored me. At an hour and a half I asked again. They said it is based on your condition because I told them I saw 6 people come in after him and go back before him. (I couldn't even tell what was wrong with 4 of them - they couldn't have been that sick. There was no blood, no crying, no moaning, no limping, no holding a certain body part, NOTHING!) I told them that he is a baby and needs to be seen, they once again blew me off. I finally asked the nurse when he was going to be seen that he needs to eat again soon. (I know he will be okay for a while, but I am not dumb I know once you get to go back it will still be another 3 hours before you go home!) She said, "When did he eat last?" "8pm" :Oh, he will be fine!" She was so rude and then she walked away. I started to cry, I was getting so angry! They weren't helping my son, I knew he needed the tube put back in soon and they didn't care. I called my husband again, this time in tears. His second job is about 5 minutes from there so he came right over and FINALLY they took him back. It is crazy that I have to get to the point of tears for them to help my 4 months old baby! While we waited for the doctor the insurance lady came in - so they want to be sure they know HOW they are going to be paid before they every DO anything to be paid for! Next time I am refusing to give them information until they help him. Once the doctor came in he looked at it and I said, "It is starting to close already, isn't it?" He said "Yes." I about lost it! My fist were as tight as I could be and my jaw being clenched shut was the only thing that kept me from yelling. They said it was too tight, they couldn't get the button in again. They told us they were going to have to get the surgeon to look at him, he may need surgery to put it in again! As you can imagine I am doing everything I can to not lose my testimony and go choke that nurse! Finally they put a smaller tube in that would work as a temporary feeding tube until I could take him to St. Chris the next day. Can you believe that a world known hospital such as Lehigh Valley could not take the time and be bothered enough to have a doctor come help Dillon so they took the easy way out and let me take him to Philly the next day. I am filing a written complaint against the nurse on Monday. She lied to me and it almost cost my son surgery. As you read in a old post, Faith died from a feeding tube surgery and this dumb nurse almost made Dillon have to go through it again. I took him to St. Chris right away the next day, they don't take patience in surgery clinic on Fridays but they were more than happy to help him and get it taken care of right away. It hurt Dillon when they pushed it in again ("thank you" to nurse Olga for that one!). They then wanted to Xray him to be sure it was in right, but my insurance is messed up right now, so they took the time to call and make sure they would pay for it. They care! They really care about Dillon and want him to be safe. I have even more appreciation for St. Christopher's now.
What a week - I plan to enjoy the weekend - hope you all do the same!
Josiah started his second job on Tuesday. He leaves the house at 8:30am I take him up dinner and get to see him from about 5:30-6:00pm then he comes home at 2:15am. This should only last for 6-9 months, Lord Willing. I miss him very much, but we both know we need for him to do this right now. We need to get out of debt then we should be fine.
We were in special meeting this week with Bro. Milton Martin. He spoke a lot about the churches in South America that are a product from his ministry. There are over 300 churches that have been started out of his work there. Praise God! These churches were always self-supporting and reproducing! Thursday night he spoke on truly believing in prayer. Do we? Do you? Do you really believe that if you gather together and pray for the church service or for a person salvation that God will bring it to pass? I think we all are lacking in this area. Bro Martin also pointed out how so often we pray for physical needs and not spiritual. Will you pray for the health and even life of a person and forget to pray for salvation? I know I do. I pray nonstop for Dillon's health needs, but I have given up on believing Dillon will ever be capable of making the decision to get saved. What if I am wrong - what if God heals him and he one day needs to make that decision...Will I wonder if my lack of prayer for him played a part in him dying and going to Hell? What about your family, do you pray when they are sick and forget to pray for soul? Or do we remember, but have such little faith that God will save them that it seems like a waste of time to pray?
Thursday night I got home from church and went downstairs to pump for Dillon, eat ice cream then get a shower and give Dillon a bath. Wow, did my night change! I put Dillon down on my bed and had his feeding tube in my mouth as he was just finishing his meal. The whole Mic Key button popped right out of his tummy! I was on speaker phone with my mom when it happened. I started to panic, I knew this could happen but it was the first time that it did and I was so scared. I didn't know if I had hurt him or not, I was shaking so bad that after four attempts to put it back in (like the doctors had told me to do) I just gathered him up as quickly as I could, tossed him in the car, put my four-ways on and drove as fast as I could to the ER. I went to a place that is much cheaper and only .2 miles further than the main hospital and they said they couldn't do it so I rushed him into the major hospital's ER, Lehigh Valley Hospital. I sat there for about 10 minutes until the nurse called me back to check his temperature, blood pressure, etc. She asked about his breathing being so heavy, this is normal for him though. She also asked what his blood oxygen normally is, I told her 92-100 it was 92-93 so it was good. I showed her the discharge papers from St. Chris when she asked about his medical history. I even showed her that I had a new Mic Key button for them already. I told her everything! I even told her his diagnosis - every detail I could. I asked how long it will take before it starts to close up - she told me it would be hours before that would happen. So after being there an hour I went up and asked how much longer, they basically ignored me. At an hour and a half I asked again. They said it is based on your condition because I told them I saw 6 people come in after him and go back before him. (I couldn't even tell what was wrong with 4 of them - they couldn't have been that sick. There was no blood, no crying, no moaning, no limping, no holding a certain body part, NOTHING!) I told them that he is a baby and needs to be seen, they once again blew me off. I finally asked the nurse when he was going to be seen that he needs to eat again soon. (I know he will be okay for a while, but I am not dumb I know once you get to go back it will still be another 3 hours before you go home!) She said, "When did he eat last?" "8pm" :Oh, he will be fine!" She was so rude and then she walked away. I started to cry, I was getting so angry! They weren't helping my son, I knew he needed the tube put back in soon and they didn't care. I called my husband again, this time in tears. His second job is about 5 minutes from there so he came right over and FINALLY they took him back. It is crazy that I have to get to the point of tears for them to help my 4 months old baby! While we waited for the doctor the insurance lady came in - so they want to be sure they know HOW they are going to be paid before they every DO anything to be paid for! Next time I am refusing to give them information until they help him. Once the doctor came in he looked at it and I said, "It is starting to close already, isn't it?" He said "Yes." I about lost it! My fist were as tight as I could be and my jaw being clenched shut was the only thing that kept me from yelling. They said it was too tight, they couldn't get the button in again. They told us they were going to have to get the surgeon to look at him, he may need surgery to put it in again! As you can imagine I am doing everything I can to not lose my testimony and go choke that nurse! Finally they put a smaller tube in that would work as a temporary feeding tube until I could take him to St. Chris the next day. Can you believe that a world known hospital such as Lehigh Valley could not take the time and be bothered enough to have a doctor come help Dillon so they took the easy way out and let me take him to Philly the next day. I am filing a written complaint against the nurse on Monday. She lied to me and it almost cost my son surgery. As you read in a old post, Faith died from a feeding tube surgery and this dumb nurse almost made Dillon have to go through it again. I took him to St. Chris right away the next day, they don't take patience in surgery clinic on Fridays but they were more than happy to help him and get it taken care of right away. It hurt Dillon when they pushed it in again ("thank you" to nurse Olga for that one!). They then wanted to Xray him to be sure it was in right, but my insurance is messed up right now, so they took the time to call and make sure they would pay for it. They care! They really care about Dillon and want him to be safe. I have even more appreciation for St. Christopher's now.
What a week - I plan to enjoy the weekend - hope you all do the same!
Friday, October 13, 2006
To do BI or not to do BI...That is the question
As you can tell by the post I am debating over Bible Institute. I have a test and paper due Monday. I have been working on the paper - but you know how you get to a point where writer's block sets in? I at that point right now so I decided to write a quick post instead. I know so many people are praying and I wanted to give you some good news and say thank you for praying. Dillon's vision therapist was here yesterday, she has been in this field for 23 years. She said she is pretty sure she saw him looking at her lights several times!! Praise the Lord! I do understand, and want to make you do too, this is not a "for sure" thing it is more her gut feeling, but she has been doing this for so long I tend to think she knows what she is looking for.
I want to tell my husband - thank you for never giving up on God or on Dillon (or me for that matter). I have been the one saying "He is blind! We need to just accept it." all along and Josiah is the one saying that he believes Dillon will be able to see, he keeps reminding me to just give him some time to recover. I hear the therapist's encouraging words and it helps me to have faith that God is going to work in Dillon's eyes, but Josiah has had the faith without any human signs. It reminds me of unbelieving Thomas (many people call him doubting but he didn't doubt he was unbelieving). The other disciples believed without any proof yet Thomas refused to believe Christ was alive again until he saw and touched Jesus. Am I "unbelieving Tiffany" as he was "unbelieving Thomas"? Do I require God to give me a physical sign before I will have faith in Him? I sure hope not.
I want to tell my husband - thank you for never giving up on God or on Dillon (or me for that matter). I have been the one saying "He is blind! We need to just accept it." all along and Josiah is the one saying that he believes Dillon will be able to see, he keeps reminding me to just give him some time to recover. I hear the therapist's encouraging words and it helps me to have faith that God is going to work in Dillon's eyes, but Josiah has had the faith without any human signs. It reminds me of unbelieving Thomas (many people call him doubting but he didn't doubt he was unbelieving). The other disciples believed without any proof yet Thomas refused to believe Christ was alive again until he saw and touched Jesus. Am I "unbelieving Tiffany" as he was "unbelieving Thomas"? Do I require God to give me a physical sign before I will have faith in Him? I sure hope not.
Heb 11:1 Now faith is the substance of things hoped for, the evidence of things not seen.
Wednesday, October 11, 2006
Specifically
Dillon's ear appointment today showed that his left ear is worse than the right. He is severe to profound in the left. This means that down the road he may be able to get the implants. I learned that they will only ever implant one ear anyways. This is due to the fact that they destroy the little tiny hairs in the ear when they place the parts inside it which totally removes any hearing that the person did have in that ear. Therefore they will only do this on one ear in case something happens and the implant doesn't work right or illness causes it to no longer work etc. At least then they would not leave the person without any hearing in both ears. This being said Josiah and I may have to decide if we want to get it in the left ear later on, it is our decision. It would be surgery on his head, which of course always has dangers, and the insurance may not pay for all of it because it is considered elective. My opinion, and this is without having seen my husband to talk it over with him, is that I would want to wait to make sure he could understand language before we put him under the knife to improve the hearing from what hearing aids can give him. But this is not something that needs to be worried about for a while.
I spoke with his neurologist today. He gave him permission for Dillon to undergo the Vital Stim therapy but he would prefer I wait to see if the problem is being caused by the medicine. Dillon has been so tired that he doesn't even lift his head anymore due to the full doses of two medicine as we are in the process of switching over. Therefore, he told me to go ahead and move things along faster. Instead of waiting another week and a half to start lowing the one medicine I can start lowering it tonight. This means Dillon would be off of it Oct 25. If he does not have seizures then everything is good, if he does he will have to go back on it. This medicine could be causing a lot of the issues that we see in Dillon - and it is my prayer that it is in fact the cause. I say this because if it is the cause we will soon be seeing improvements. The eye doctor, yesterday, told me there is no improvement and if anything Dillon is starting to get a wandering eye. His right eye is moving upwards when the left is not. This, too, could be from the medicine. To sum it up - the medicine could be causing all, none, or any combination of: unable to swallow, not sucking, blindness, not having good control of his head, not crying (I believe but don't quote me on this one), wandering eye, his extreme tiredness. The eye doctor also told me of a Mom, much like myself. She is young, loves her baby, usually smiling, etc. Her daughter was in six times (about 2.5-3 months in between each visit) and every time she came is she was saying "I know she is better, I just know it!" and the doctor and nurse said it broke their heart to tell her nothing had changed each time and she left crying. This week she came in and her daughter was a different baby! She was smiling and laughing reaching for toys and acting like a normal baby. Her vision suddenly came! I am trying to find out if they will give my contact info to this mom so I can find out what toys/stimulus she gave her daughter.
Please PRAY SPECIFICALLY for these:
1. Dillon would not have any seizures as we take him off this one medicine.
2. The medicine would be the cause of: his vision problems, his sucking problem, his swallowing, his energy, his head control, and even his ears (I don't know if this one is medically possible but with God it is!)
3. His ears would improve enough that we won't even need to decide about implants or not.
My parents church in Ohio was praying (and still is...THANK YOU!) when we were in the NICU and they said when we asked for them to pray specifically for Dillon issues they saw God answering their prayer request much more than when they were just praying in general for him. I think this is because we are looking at it different if we pray specifically, but I also think God wants us to go to Him and be very specific. God doesn't want us to say "God, please save everyone in the world, bless all our missionaries, and heal the sick." He wants the names of the people who are on our heart, the ones that we are trying to win. He wants to hear us ask for the needs that the missionaries have asked us to pray for, and he wants us to go to Him with our health needs and ask Him to work a miracle in the specific ways. God's answer may be no, but at least He gives us liberty to go to Him with boldness and ask.
Thank you for all your prayers. I have been told that people read my blog that don't usually comment...I would appreciate if you could just comment "hi!" and leave your name (even a first name and something that I would know who you are by it) so that I know who is reading. It amazes me how many people are praying for my son, my husband, and myself. However, to keep with what I have just been saying, I would like to thank God specifically for each person who reads this and prays for us.
I spoke with his neurologist today. He gave him permission for Dillon to undergo the Vital Stim therapy but he would prefer I wait to see if the problem is being caused by the medicine. Dillon has been so tired that he doesn't even lift his head anymore due to the full doses of two medicine as we are in the process of switching over. Therefore, he told me to go ahead and move things along faster. Instead of waiting another week and a half to start lowing the one medicine I can start lowering it tonight. This means Dillon would be off of it Oct 25. If he does not have seizures then everything is good, if he does he will have to go back on it. This medicine could be causing a lot of the issues that we see in Dillon - and it is my prayer that it is in fact the cause. I say this because if it is the cause we will soon be seeing improvements. The eye doctor, yesterday, told me there is no improvement and if anything Dillon is starting to get a wandering eye. His right eye is moving upwards when the left is not. This, too, could be from the medicine. To sum it up - the medicine could be causing all, none, or any combination of: unable to swallow, not sucking, blindness, not having good control of his head, not crying (I believe but don't quote me on this one), wandering eye, his extreme tiredness. The eye doctor also told me of a Mom, much like myself. She is young, loves her baby, usually smiling, etc. Her daughter was in six times (about 2.5-3 months in between each visit) and every time she came is she was saying "I know she is better, I just know it!" and the doctor and nurse said it broke their heart to tell her nothing had changed each time and she left crying. This week she came in and her daughter was a different baby! She was smiling and laughing reaching for toys and acting like a normal baby. Her vision suddenly came! I am trying to find out if they will give my contact info to this mom so I can find out what toys/stimulus she gave her daughter.
Please PRAY SPECIFICALLY for these:
1. Dillon would not have any seizures as we take him off this one medicine.
2. The medicine would be the cause of: his vision problems, his sucking problem, his swallowing, his energy, his head control, and even his ears (I don't know if this one is medically possible but with God it is!)
3. His ears would improve enough that we won't even need to decide about implants or not.
My parents church in Ohio was praying (and still is...THANK YOU!) when we were in the NICU and they said when we asked for them to pray specifically for Dillon issues they saw God answering their prayer request much more than when they were just praying in general for him. I think this is because we are looking at it different if we pray specifically, but I also think God wants us to go to Him and be very specific. God doesn't want us to say "God, please save everyone in the world, bless all our missionaries, and heal the sick." He wants the names of the people who are on our heart, the ones that we are trying to win. He wants to hear us ask for the needs that the missionaries have asked us to pray for, and he wants us to go to Him with our health needs and ask Him to work a miracle in the specific ways. God's answer may be no, but at least He gives us liberty to go to Him with boldness and ask.
Thank you for all your prayers. I have been told that people read my blog that don't usually comment...I would appreciate if you could just comment "hi!" and leave your name (even a first name and something that I would know who you are by it) so that I know who is reading. It amazes me how many people are praying for my son, my husband, and myself. However, to keep with what I have just been saying, I would like to thank God specifically for each person who reads this and prays for us.
Friday, October 06, 2006
Pumpkin Patch & Hearing Aids
Okay - I know it is a weird combination but those are the events of our life this week. First, the pumpkin patch. Dillon and I went to our first M&M (Mommy and Me) activity on Tuesday which was to a pumpkin patch. We rode on a hayride then Dillon picked his pumpkin from the field - can you believe he picked one that is bigger than him! Of course he let Mommy carry it so he didn't mind. :-D The rest of the pictures can be found at http://www.flickr.com/photos/70543163@N00/260054985/
Then on Wed. I took him for a heaing test. I didn't think I would be given the results but she did tell me! He is moderately severe to severe hearing impaired. This means that he can hear a lawn mower or an air plane if he is next to them but he cannot hear in the vocal range. His right ear is a little better than the left although she didn't get to finish the test on the left becuase he wouldn't stay asleep (of course the one time I want him to sleep.....!!) Anyways, we will go back next wed and see if his congestion is adding to the hearing loss at all. It MAY be part of the problem and thus he MAY actually only me moderate hearing loss - we will see. This is good news in a way though. Of course I do not want my son to have to wear hearing aids for the rest of his life - it is IS a blessing that hearing aids will help to hear almost as well as we do! She said his hearing could get worse, but it could get better too. It is VERY rare that it would improve so well that he wouldn't need them at all - but we do have a Great God that can fix Dillon's ears if he wants. And even if he doesn't Dillon should be able to hear with the hearing aids. Until he is fully grown (in his 20's) he will have to wear the kind that go over the ear so we get to pick the color. Daddy wants to go with the clear ones - so clear it is! When he is a little bigger we can get colored parts that go in his ear but right now he will be out growing them every months so he just gets the boring skin tones for now. That is about all with his ears. The vision therapist came yesterday, which was her first time seeing him awake, but she THOUGHT he might have looked at her christmas lights twice. There is no way to tell for sure it was just her "gut feeling" :)
This link is a picture of the hearing aids Dillon will have, except we will probably get him the clear ones. (Sorry, I can't get the picture to upload into my blog!) http://www.aidright.com/ProdImages/sumo.jpg
Monday, October 02, 2006
Verses
Psalm 116
1 I love the LORD, because he hath heard my voice and my supplications.
2 Because he hath inclined his ear unto me, therefore will I call upon him as long as I live.
3 The sorrows of death compassed me, and the pains of hell gat hold upon me: I found trouble and sorrow.
4 Then called I upon the name of the LORD; O LORD, I beseech thee, deliver my soul.
5 Gracious is the LORD, and righteous; yea, our God is merciful.
6 The LORD preserveth the simple: I was brought low, and he helped me.
7 Return unto thy rest, O my soul; for the LORD hath dealt bountifully with thee.
8 For thou hast delivered my soul from death, mine eyes from tears, and my feet from falling.
9 I will walk before the LORD in the land of the living.
10 I believed, therefore have I spoken: I was greatly afflicted:
11 I said in my haste, All men are liars.
12 What shall I render unto the LORD for all his benefits toward me?
13 I will take the cup of salvation, and call upon the name of the LORD.
14 I will pay my vows unto the LORD now in the presence of all his people.
15 Precious in the sight of the LORD is the death of his saints.
16 O LORD, truly I am thy servant; I am thy servant, and the son of thine handmaid: thou hast loosed my bonds.
17 I will offer to thee the sacrifice of thanksgiving, and will call upon the name of the LORD.
18 I will pay my vows unto the LORD now in the presence of all his people,
19 In the courts of the LORD’S house, in the midst of thee, O Jerusalem. Praise ye the LORD.
Philiipians - my favorite book of the Bible
2:14
Do all things without murmurins and disputings:
3:7
But what things were gain to me, those I counted loss for Christ.
3:13
Brethern, I count not myself to have apprehended: but this one thing I do, forgetting those things which are behind, and reaching fforth unto those things which are before.
4:4
Rejoice in the Lord alway: and again I say, Rejoice.
4:6
Be careful in nothing; but in everything by prayer and supplication with thanksgiving let your request be made known unto God.
4:11
Not that I speak in respect of want: for I have learned, in whatsoever state I am, therewith to be content.
4:13
I can do all things through Christ which strengtheneth me.
4:19
But my God shall supply all your need according to his riches in glory by Christ Jesus.
Ephesians 3:20-21
Now unto him that is able to do exceeding abundantly above all that we ask or think, accourding to the power that worketh in us, Unto him be glory in the church by Christ Jesus throughout all ages, world without end. Amen.
John 9:1-3, 11
And as Jesus passed by, he saw a man which was blind from his birth. And his disciples asked him, saying, Master, who did sin, this man, or his parents, that he was born blind? Jesus answered, Neither hath this man sinned, nor his parents: but that the works of God should be made manifest in him.
vs 11
He answered and said, A man that is called Jesus made clay, and anointed mine eyes, and said unto me, Go to the pool of Siloam, and wash: and I went and washed, and I received sight.
Thursday, September 28, 2006
Should We Hope?
Last night before church Dillon was laying on the living room floor in a prop I made him out of blankets. He was sitting up a little with the blanket surrounding him completely to keep him in place. I walked into the living room, which was fairly dark, to get Dillon ready for church. I turned on the light and as soon as I did Dillon started moving his arms, legs, and head. Did he see the light? If so, why doesn't he always react to it? This leads me to wonder if I should have hope or not.
Pr 13:12 Hope deferred maketh the heart sick: but when the desire cometh, it is a tree of life
How do I know when my hope is going to make my heart sick and when to have hope because it will become a tree of life? It is something I decide or am I supposed to hope until God tells me otherwise? Is God telling me to stop hoping by my true belief that he is going to be blind? Or am I, as my husband says, just being pessimistic? Am I giving up on God and Dillon to say that I don't think he will ever see or am I just preparing myself in case that is reality?
If anyone has gone through a hard situation like this where you didn't know if you should have hope or not, please comment and tell me if you decided to keeping hoping or not and how it turned out. I know every situation is different and just because God answered you one way doesn't mean it will be the same for me - but I am just interested to see how God worked in other people's lives when they were at a point of not even knowing if they should have hope! If you do not want it posted but are willing to share your story with me my email is hediedforus1015@aol.com Thank you!
Pr 13:12 Hope deferred maketh the heart sick: but when the desire cometh, it is a tree of life
How do I know when my hope is going to make my heart sick and when to have hope because it will become a tree of life? It is something I decide or am I supposed to hope until God tells me otherwise? Is God telling me to stop hoping by my true belief that he is going to be blind? Or am I, as my husband says, just being pessimistic? Am I giving up on God and Dillon to say that I don't think he will ever see or am I just preparing myself in case that is reality?
If anyone has gone through a hard situation like this where you didn't know if you should have hope or not, please comment and tell me if you decided to keeping hoping or not and how it turned out. I know every situation is different and just because God answered you one way doesn't mean it will be the same for me - but I am just interested to see how God worked in other people's lives when they were at a point of not even knowing if they should have hope! If you do not want it posted but are willing to share your story with me my email is hediedforus1015@aol.com Thank you!
Tuesday, September 26, 2006
Remembering Faith
The first night we spent at St. Christopher's was hard on us both, of course. We were given the "dorms" to sleep in. This meant I had to sleep in a room with up to 3 other women and Si had to sleep in a room with other men. Well, at the time we still hadn't celebrated our first wedding anniversary and had never been apart for the night. Do you think after just giving birth to our baby and not sleeping that first night at all because of him problems that I was really going to be able to sleep away from my husband in another room? No! I needed those nights more than ever. So - Josiah decided that I was going to sleep in the room with him. There was stuff in the room that showed someone else was staying there but no one showed up. So I did, we put the little mattress things on the floor so we could sleep beside each other. The next night, however, we did the same thing and this man came into the room. I felt very bad about being in there and so Si asked him if it was okay. He said it was fine with him. We found out that his wife was still at home because of a C-section. This started a friendship between David, his wife Ada, their little girl Faith and us. We enjoyed the fact that God brought us together and their little girl’s name is Faith and we chose the name Dillon because it means “faithful”. David was a refugee from Liberia and his wife was from another African country. They are both saved and love the Lord. They had tried to have a baby for ten years - and then they found out they were pregnant! During the pregnancy the Doctors saw that Faith had water on her brain and wanted David and Ada to kill her. They could not kill the little girl they prayed for ten years to have, though. Faith was born about a week before Dillon with the water so compressed that she had a brain stem but basically no brain. She was a beautiful little girl who moved her arms and legs and eyes. We were told that all her movements were neurological – in other words she was not purposefully moving anything. Faith went through many tests and procedures but to make a long story a little shorter she was still in the NICU when we left. At one point the doctors wanted them to take her off the ventilator to die. Faith was trying to breath during the day, it was only at night that she let the machine do all the work. Again, her parents could not play God and take her off. They were praying for a miracle and if it never came they were at least going to let God decide when to take her home. For the last couple weeks we were there Faith and Dillon were so close together I sat with Dillon and watched little Faith at the same time. I received an email last night from my mother-in-law (who was still emailing David and Ada – I didn’t know they had the email address other wise I would have been emailing them as well). Faith had the same surgery Dillon had – the feeding tube surgery. However, I guess there were complications from it. David and Ada spent three days holding little Faith before she died in their arms. August 10, 2006 Faith went home to be with the Lord. I told Dillon his friend from the NICU is waiting with Jesus and will see him, and us, one day. I want to write David and Ada and ask them for a picture of Faith to keep, if I get it I will post it so that everyone can see how beautiful she was and remember too pray for her parents.
Friday, September 22, 2006
Road Trip!
Josiah's parents need him to set up their computer and since he is interviewing with hopes of starting a second job - this weekend is our only chance to go. So at 3pm today - we are headed off for WV. Lord Willing, we will leave after morning church and get back in time for service at our church Sunday evening.
Dillon's doctor said we do not need to do another MRI right now, he would like to do it when Dillon is around nine months old though. He is also going to switch Dillon to another medicine called Keppar. It will not be until November 10th that Dillon is completely off of the Phenobarbotol (sp?) due to the fact that we have to slowly introduce the Keppar and then slowly remove the Phenobarb. This other medicine does not have the side effects as the Phenobarb, the extreme sleepiness or inability to learn. Please pray Dillon's body handles the change well and that we will successfully be able to change him over to the new medicine. I am really praying that we will see more progress in Dillon as he is starts to be more awake! Have a good weekend!
Dillon's doctor said we do not need to do another MRI right now, he would like to do it when Dillon is around nine months old though. He is also going to switch Dillon to another medicine called Keppar. It will not be until November 10th that Dillon is completely off of the Phenobarbotol (sp?) due to the fact that we have to slowly introduce the Keppar and then slowly remove the Phenobarb. This other medicine does not have the side effects as the Phenobarb, the extreme sleepiness or inability to learn. Please pray Dillon's body handles the change well and that we will successfully be able to change him over to the new medicine. I am really praying that we will see more progress in Dillon as he is starts to be more awake! Have a good weekend!
Monday, September 18, 2006
Off to School
Not too much has been happening. Dillon has been sick since Friday with a cold. I think he is finally doing better. He didn't sleep ALL day long today and was actually picking his head up and oushing with his arms and legs, which he hasn't done since Friday. I think he is getting better finally. Other than that I am just continuing my search for a home based business...that isn't going as well as I would like.
Well I am off to BI (Bible Institute) which is Monday nights for 3 hours. Right now it is one class instead of two, so 3 hours of Pauline Epistles with Pastor Shorter. Have a good evening everyone!
Well I am off to BI (Bible Institute) which is Monday nights for 3 hours. Right now it is one class instead of two, so 3 hours of Pauline Epistles with Pastor Shorter. Have a good evening everyone!
Tuesday, September 12, 2006
Ketchup (Sorry no fries with it)
It has been a while since I wrote last, for all those looking for Dillon updates – I apologize. I also apologize for how long this blog is going to be, but it is the only way to catch up on all that has happened. Over Labor Day, Josiah and I went to Ohio to see my family. My grandfather has cancer again and he is turning 70, so we all wanted to get together to see him. The three of us were there, my grandparents, my parents (and their dog), my sister and her husband (and their dog), my aunt and uncle and their three kids, and my uncle and aunt and their five kids. The only ones who weren’t there are my uncle and aunt and their son because they are in Italy (Army). Needless to say, Dillon never lacked for cuddles!
Saturday night I put Dillon to sleep on his tummy and around 6am the apnea alarm went off. He had put his face straight down in the bassinette. This is the only time the alarm has sounded. Praise the Lord we had the machine because that had nothing to do with his health problems that was just being a normal baby. Can you imagine what our Sunday would have been like if we didn’t have the machine?
Sunday morning when we got to Church, to the church my parents go to and I used to go to, my mom and dad had bought Dillon a little suit so I went in to change him. Daddy was surprised when I brought Dillon out in black socks, black dress pants, a white dress shirt, a vest and a tie! (Yes, I will be putting pictures on eventually!) Service was great, and it was so nice to see everyone again. I saw my friend who has a baby 9 days younger than Dillon. It was a little hard because he is a lot more advanced than I thought he was (which means more advanced than Dillon) but it was not as hard as I thought it would be.
The rest of the trip was wonderful, I enjoyed seeing my sister and the rest of the family. I also saw a friend from high school and a teacher that I had all four years of high school, and a teacher my sister and I both had in Middle school. Josiah and I took Dillon in the hotel's pool with us and he seemed to really like it. He started talking up a strom and didn't have his mad face on so we think he enjoyed it! The last night there I forgot to give Dillon his meds at 2am and couldn’t figure out why he woke me up every single hour and every time he was in the bassinette playing! On the way home he woke up about 5:30pm and stayed awake until we got home at 7pm and then played HARD for about an hour and a half. He was scooting and lifting his head, pushing up with his feet and just kept going and going. I wonder if it was due to the fact that he missed a dose of medicine.
Dillon had an ear appointment on Thursday. All they told me was that it is not water in the ears nor is it ear infections. Therefore it is hearing loss. We have to go for yet another test to see how bad it is. I have done some research and it seems like this type of hearing loss can be helped to some degree by hearing aids or implants. We will see. The doctor made me very upset by acting like there was no rush whatsoever in finding out if Dillon has any hearing at all. It would be different if it were HIS son that that could be both blind and deaf – I am pretty sure he would see it as a more urgent matter.
On Friday the mom of a friend of mine from church drove Dillon and I to his appointment in Philly. She was so sweet, not only did she drive and refuse money for gas, but she bought lunch and coffee and then after the appointment milk shakes! It was a good time of fellowshipping with her. The appointment was a developmental check up thing. BORING! After talking with the doctor I have come to the conclusion – I am done with doctors! I am not going to any more appointments than absolutely necessary. They leave me discouraged for days afterwards where all I can do is look at my son and start crying. She told me that MRI’s are not convulsive. You can have an normal MRI and not be “normal” and vise versa. So – why am I about to put Dillon through yet another MRI this Thursday? Why am I going to let them put a tube down his throat again if he isn’t already sleeping for it? Why do all this to find out nothing has changed and just to have my hopes up? Why do it because if it does show improvements it doesn’t change any of the therapy we are doing with him? Good questions. I am waiting for the neurologist to return my call to explain to me why I am. (I am also asking if we can switch Dillon to a less drowsy medicine. Plus someone told my mom a blood test will tell us if he has CP or not – I am finding out if this is true.) Okay, back to the appointment on Friday – they told me Dillon’s muscle tone is weak so I happily told them how he pushes up on me and stands up etc. The os-so-nice doctor then told me, “Oh, well he is probably in the switch over state developing the CP.” There is no winning with these people! First he is too lose and then he is too tight. I give up! Not on Dillon or on believing God can fix him, but on the doctors! Truth be told, I have battled with getting mad at God – but it only seems to happen after I hear all the woes from the doctors – that is why I am finished with them as much as possible. The only helpful thing the told we was to get an early intervention vision therapist to come to the house, just in case Dillon can see. So I am waiting to hear back from the coordinator on who is going to come.
I found a doctor on the internet and to make a long story short (because this blog is long enough already!) There is a place about 5 miles from my house that does Vital Stim therapy. It is using electric shock treatments to help swallow. It sounds mean but it is apparently painless. There are amazing statistics from this therapy. I have a call into them as well. The website – if you want to read more about it is – www.VitalStim.com
This pretty much feels you in on what has been going on with Dillon and I. Hopefully I will be able to keep posting more often so they aren’t this long. Again, I am sorry for the length of this post. I will try to put pictures on, but I will not have the internet tomorrow so not sure when I will be able to.
Saturday night I put Dillon to sleep on his tummy and around 6am the apnea alarm went off. He had put his face straight down in the bassinette. This is the only time the alarm has sounded. Praise the Lord we had the machine because that had nothing to do with his health problems that was just being a normal baby. Can you imagine what our Sunday would have been like if we didn’t have the machine?
Sunday morning when we got to Church, to the church my parents go to and I used to go to, my mom and dad had bought Dillon a little suit so I went in to change him. Daddy was surprised when I brought Dillon out in black socks, black dress pants, a white dress shirt, a vest and a tie! (Yes, I will be putting pictures on eventually!) Service was great, and it was so nice to see everyone again. I saw my friend who has a baby 9 days younger than Dillon. It was a little hard because he is a lot more advanced than I thought he was (which means more advanced than Dillon) but it was not as hard as I thought it would be.
The rest of the trip was wonderful, I enjoyed seeing my sister and the rest of the family. I also saw a friend from high school and a teacher that I had all four years of high school, and a teacher my sister and I both had in Middle school. Josiah and I took Dillon in the hotel's pool with us and he seemed to really like it. He started talking up a strom and didn't have his mad face on so we think he enjoyed it! The last night there I forgot to give Dillon his meds at 2am and couldn’t figure out why he woke me up every single hour and every time he was in the bassinette playing! On the way home he woke up about 5:30pm and stayed awake until we got home at 7pm and then played HARD for about an hour and a half. He was scooting and lifting his head, pushing up with his feet and just kept going and going. I wonder if it was due to the fact that he missed a dose of medicine.
Dillon had an ear appointment on Thursday. All they told me was that it is not water in the ears nor is it ear infections. Therefore it is hearing loss. We have to go for yet another test to see how bad it is. I have done some research and it seems like this type of hearing loss can be helped to some degree by hearing aids or implants. We will see. The doctor made me very upset by acting like there was no rush whatsoever in finding out if Dillon has any hearing at all. It would be different if it were HIS son that that could be both blind and deaf – I am pretty sure he would see it as a more urgent matter.
On Friday the mom of a friend of mine from church drove Dillon and I to his appointment in Philly. She was so sweet, not only did she drive and refuse money for gas, but she bought lunch and coffee and then after the appointment milk shakes! It was a good time of fellowshipping with her. The appointment was a developmental check up thing. BORING! After talking with the doctor I have come to the conclusion – I am done with doctors! I am not going to any more appointments than absolutely necessary. They leave me discouraged for days afterwards where all I can do is look at my son and start crying. She told me that MRI’s are not convulsive. You can have an normal MRI and not be “normal” and vise versa. So – why am I about to put Dillon through yet another MRI this Thursday? Why am I going to let them put a tube down his throat again if he isn’t already sleeping for it? Why do all this to find out nothing has changed and just to have my hopes up? Why do it because if it does show improvements it doesn’t change any of the therapy we are doing with him? Good questions. I am waiting for the neurologist to return my call to explain to me why I am. (I am also asking if we can switch Dillon to a less drowsy medicine. Plus someone told my mom a blood test will tell us if he has CP or not – I am finding out if this is true.) Okay, back to the appointment on Friday – they told me Dillon’s muscle tone is weak so I happily told them how he pushes up on me and stands up etc. The os-so-nice doctor then told me, “Oh, well he is probably in the switch over state developing the CP.” There is no winning with these people! First he is too lose and then he is too tight. I give up! Not on Dillon or on believing God can fix him, but on the doctors! Truth be told, I have battled with getting mad at God – but it only seems to happen after I hear all the woes from the doctors – that is why I am finished with them as much as possible. The only helpful thing the told we was to get an early intervention vision therapist to come to the house, just in case Dillon can see. So I am waiting to hear back from the coordinator on who is going to come.
I found a doctor on the internet and to make a long story short (because this blog is long enough already!) There is a place about 5 miles from my house that does Vital Stim therapy. It is using electric shock treatments to help swallow. It sounds mean but it is apparently painless. There are amazing statistics from this therapy. I have a call into them as well. The website – if you want to read more about it is – www.VitalStim.com
This pretty much feels you in on what has been going on with Dillon and I. Hopefully I will be able to keep posting more often so they aren’t this long. Again, I am sorry for the length of this post. I will try to put pictures on, but I will not have the internet tomorrow so not sure when I will be able to.
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