At approx. 7.5 months old Haddie had her first baby cereal last night. That is not to say it was her first bite of food since I know Truett fed her chocolate once, we have found grapes and other things in her mouth (she acts like a puppy and crawls under the table when we eat hoping Truett will drop things!) But she did great with her cereal.
CLICK HERE to watch the video.
Monday, April 30, 2012
Last week was a hard week
Last week was a hard week:
Monday our nurse had to leave a little early because her Mom's health was quickly failing. The next day I read that her Mom had passed away. My heart broke for her and her family.
Wednesday started missions conference at VFBT. It was a great time! During the day I emailed a new friend I had been put in contact with that I wanted to come see her the next day as her little "pillow angel" was in the hospital and not doing well.
Thursday I woke up sick and so did Jay and Truett. So in the morning I emailed that friend that I wasn't going to be able to make it after all b/c I didn't want to take any virus to them. Later that day was an IEP meeting for Dillon and since I couldn't find any child care they had to go to the meeting with me. We went to mission conference again that night, which was a blessing. It was also my GramMa and GramPa's anniversary. Since GramPa passed away last year it is a bittersweet day. I felt bad that I didn't call her all day so I planned to do it when I got home from church. However, when I got home I checked facebook and saw this new friend posted that her daughter closed her eyes here on earth and opened them in Heaven at 5:05pm. I just started crying. I went down and just hugged Dillon and cried. I am so thankful for the time Dillon has been here with us. My neuro just told my nurse two weeks ago that he didn't think Dillon would still be here. He gave credit to the nurses for the excellent care he gets. I know it is due to the excellent care, but also due to God's sustaining grace in Dillon's life. I know that his life is fragile. I know that any sickness could quickly turn serious, like it did for this other sweet Pillow Angel. Hearing of this little girl's home going just struck my heart... I know one day that may be us and it hurts to think of what this family will be going though. The sadness and grief they must be feeling!
Around 10pm I finally called GramMa and when she asked me how I was - I burst into tears! I told her about this Pillow Angel and how my heart was breaking for her parents and her siblings. She sweetly talked to me and understood. She helped and encouraged me, even on a day that was understandably a hard day for her!
Around 11:30 that night my Mom texts my husband that someone in our family died. So I called her and found out that her Uncle passed away. I think I only met him one, maybe two times, since my Mom is adopted. But I am very sorry for the family's loss as it was totally unexpected. I believe my great uncle knew the Lord and is in Heaven with Him today. The only way to know for sure you will go to heaven is to know that you are a sinner deserving Hell as a punishment and that Jesus Christ loved you, came to earth to die FOR you - or in your place so you can go free. Believe these things, Call on God to save you and He will!! So simple, so easy, yet so hard to humble ourselves and so misunderstood by many.
Friday was the viewing for Dillon's nurses' Mom. We went to that with a new nurse filling in for her. It was good to say Hi to her family, but my heart goes out to them. Friday night was again Missions Conference. During the missions conference I had to take Dillon out of church because he had a high heart rate and was breathing heavy. I was watching him breathe in and out and it wasn't normal. I gave him inhalers which seemed to help a little.
Saturday was GramMa's birthday. We were able to skype with GramMa for a little bit which was nice. We also started watching the movie Courageous! Awesome! But we had to stop it 2/3 of the way through b/c Josiah and Jay had plans. We finished it Sunday afternoon. It was a WONDERFUL movie and if anyone hasn't watched it I HIGHLY recommend it! Dillon continued to have a higher heart rate and needed oxygen.
Sunday Dillon needed up to 1.5 LPM. I started asking people to pray for him because things just don't seem right with him. I am afraid he is fighting something. Sunday night, though, he was doing a little better so we went out for a bite to eat after church. The diner was about to close and there were only 2 other tables. Then an elderly man came in with a walker and sat down to drink coffee and cheesecake alone. Josiah said something about how it is sad to be alone like that. I told him we should buy his food for him. The waiter told the man there was no charge and he was confused. So the waiter told him that we covered his bill. he turned around and said Thank you and asked if he knew us. We said no but that we live around here. We found out that he also lives close by and comes there a few times a week for his coffee. He told us his wife died 3 years ago and that his kids live far away. We explained that our grandparents don't live close by and that we appreciate when other people are kind to them. We grabbed a gospel track and wrote our name and number on it in case he needs anything. We felt so blessed to have been a blessing to him. Hopefully he will read that track and learn how he can be saved, if he isn't already. It was the highlight of the week for sure!
It was one of those weeks that you are glad are over. Tomorrow (Tuesday) we are going to the viewing for the little Pillow Angel - who is no longer a pillow angel - but is running and jumping and singing Praises with the Lord!! Please lift this family up in prayer, tomorrow is going to be a hard day for them...but please don't stop praying after tomorrow. It is going to take a long time till the family is able to start to feel "normal" again. Please write down Baby Addie's Family and continue to pray for them for weeks, even months! I know they appreciate and need the prayers!
Monday our nurse had to leave a little early because her Mom's health was quickly failing. The next day I read that her Mom had passed away. My heart broke for her and her family.
Wednesday started missions conference at VFBT. It was a great time! During the day I emailed a new friend I had been put in contact with that I wanted to come see her the next day as her little "pillow angel" was in the hospital and not doing well.
Thursday I woke up sick and so did Jay and Truett. So in the morning I emailed that friend that I wasn't going to be able to make it after all b/c I didn't want to take any virus to them. Later that day was an IEP meeting for Dillon and since I couldn't find any child care they had to go to the meeting with me. We went to mission conference again that night, which was a blessing. It was also my GramMa and GramPa's anniversary. Since GramPa passed away last year it is a bittersweet day. I felt bad that I didn't call her all day so I planned to do it when I got home from church. However, when I got home I checked facebook and saw this new friend posted that her daughter closed her eyes here on earth and opened them in Heaven at 5:05pm. I just started crying. I went down and just hugged Dillon and cried. I am so thankful for the time Dillon has been here with us. My neuro just told my nurse two weeks ago that he didn't think Dillon would still be here. He gave credit to the nurses for the excellent care he gets. I know it is due to the excellent care, but also due to God's sustaining grace in Dillon's life. I know that his life is fragile. I know that any sickness could quickly turn serious, like it did for this other sweet Pillow Angel. Hearing of this little girl's home going just struck my heart... I know one day that may be us and it hurts to think of what this family will be going though. The sadness and grief they must be feeling!
Around 10pm I finally called GramMa and when she asked me how I was - I burst into tears! I told her about this Pillow Angel and how my heart was breaking for her parents and her siblings. She sweetly talked to me and understood. She helped and encouraged me, even on a day that was understandably a hard day for her!
Around 11:30 that night my Mom texts my husband that someone in our family died. So I called her and found out that her Uncle passed away. I think I only met him one, maybe two times, since my Mom is adopted. But I am very sorry for the family's loss as it was totally unexpected. I believe my great uncle knew the Lord and is in Heaven with Him today. The only way to know for sure you will go to heaven is to know that you are a sinner deserving Hell as a punishment and that Jesus Christ loved you, came to earth to die FOR you - or in your place so you can go free. Believe these things, Call on God to save you and He will!! So simple, so easy, yet so hard to humble ourselves and so misunderstood by many.
Friday was the viewing for Dillon's nurses' Mom. We went to that with a new nurse filling in for her. It was good to say Hi to her family, but my heart goes out to them. Friday night was again Missions Conference. During the missions conference I had to take Dillon out of church because he had a high heart rate and was breathing heavy. I was watching him breathe in and out and it wasn't normal. I gave him inhalers which seemed to help a little.
Saturday was GramMa's birthday. We were able to skype with GramMa for a little bit which was nice. We also started watching the movie Courageous! Awesome! But we had to stop it 2/3 of the way through b/c Josiah and Jay had plans. We finished it Sunday afternoon. It was a WONDERFUL movie and if anyone hasn't watched it I HIGHLY recommend it! Dillon continued to have a higher heart rate and needed oxygen.
Sunday Dillon needed up to 1.5 LPM. I started asking people to pray for him because things just don't seem right with him. I am afraid he is fighting something. Sunday night, though, he was doing a little better so we went out for a bite to eat after church. The diner was about to close and there were only 2 other tables. Then an elderly man came in with a walker and sat down to drink coffee and cheesecake alone. Josiah said something about how it is sad to be alone like that. I told him we should buy his food for him. The waiter told the man there was no charge and he was confused. So the waiter told him that we covered his bill. he turned around and said Thank you and asked if he knew us. We said no but that we live around here. We found out that he also lives close by and comes there a few times a week for his coffee. He told us his wife died 3 years ago and that his kids live far away. We explained that our grandparents don't live close by and that we appreciate when other people are kind to them. We grabbed a gospel track and wrote our name and number on it in case he needs anything. We felt so blessed to have been a blessing to him. Hopefully he will read that track and learn how he can be saved, if he isn't already. It was the highlight of the week for sure!
It was one of those weeks that you are glad are over. Tomorrow (Tuesday) we are going to the viewing for the little Pillow Angel - who is no longer a pillow angel - but is running and jumping and singing Praises with the Lord!! Please lift this family up in prayer, tomorrow is going to be a hard day for them...but please don't stop praying after tomorrow. It is going to take a long time till the family is able to start to feel "normal" again. Please write down Baby Addie's Family and continue to pray for them for weeks, even months! I know they appreciate and need the prayers!
More April Pics!
Truett playing in the back yard
My first facial box! For those of you who don't know I started my own Mary Kay Business. I would REALLY appreciate help starting my business! If any one would like to have a night of pampering with 2-3 friends you would be helping me SO much! I need the practice and you would have a fun night! Or - if you are interested in buying skin care products or anything else please email me. Tiffany.k@marykay.com I really appreciate help. If you tell me you read my blog there will be a special discount!!
Figs growing already in our backyard. Normally they don't start to grow already but this warm weather must have tricked them!
Other flowers in our yard - don't ask me what they are I have no clue!
Daddy and his little girl going down the slide - in her Sunday dress no less!
I love pictures of Haddie with her Daddy!
Daddy's hand with his little baby girl's hand
Oh may we as parents raise our little girl to love, honor and obey the Lord with all her heart. Not only her - but our little men too! (Its just they were napping while these pictures were being taken!)
She loves the rare times she has alone with Mommy and Daddy!
Hope you enjoyed seeing our pictures.
Kelly Anne Dolan and the Spirit of Philadelphia
The Kelly Anne Dolan Memorial Fund has an annual event with the Spirit of Philadelphia for families with kids with severe disabilities. This year we were invited to go on the 2-3 hour cruise! It was so much fun! The Spirit of Philadelphia DONATES the ship, the staff all work for free that day, and the clowns are all volunteers! I think they said it totals around $50,000! And they do it for free to be a blessing to families like ours!
Waiting in line, they had so many clowns for the kids!
Meeting Miss Philadelphia!
Somehow I thought Haddie would appreciate this photo the most one day...
While we ate lunch they were coming around making the kids laugh. I have never seen so many kids as severe as Dillon. It was "nice" to see them because it helped me know that we are not alone in this. There are SO many kids like Dillon that I have never seen anywhere before. Now, how can we reach out to these other families and encouage them and help them find strength in God????
Dillon enjoying the breeze! It was a BEAUTIFUL day! We couldn't have asked for any better!
Daddy and his girl
Aren't they sweet!?!
The front of the ship
THANK YOU to the Kelly Anne Dolan Memorail Fund people and the Spirit of Philadelphia people for their kindness! We had a great time!
Truett was hot so he found a place to sit... under a table! Hey, why not?
My little man is growing up!
But not too fast! He still like to get painted by a clown! Since it was Sunday afternoon in between church services I told him he had to get it on his arm instead of his face. He wanted a worm but the clown said that was borning b/c it would just be brown so she asked him if he wanted a snake instead.
After a LONG afternoon Dillon decided to drive us home....
Thursday, April 12, 2012
Pictures! and Videos!!
Miss Haddie is getting ready to crawl! She has been going to hands and knees for a few weeks now, but she isn't crawling on them...yet!
Easter Sunday! It was a long day so this was the best shot we got of the family but it works! We had a wonderful Easter at Greater Philadelphia Baptist Church - we were so happy to see several visitors come out!
Easter Sunday! It was a long day so this was the best shot we got of the family but it works! We had a wonderful Easter at Greater Philadelphia Baptist Church - we were so happy to see several visitors come out!
Haddie's second time in the pool, she loves it!
Click here to watch Haddie talking away http://www.youtube.com/watch?v=34er9NdVQyQ&feature=youtu.be
Clcik here to watc h Haddie crawling on her belly http://www.youtube.com/watch?v=Tf3zhZoUYt4&feature=youtu.be
Click here to see Treutt praying http://www.youtube.com/watch?v=b-YcFURtuv4&feature=youtu.be
Friday, April 06, 2012
Tuesday, March 27, 2012
Talking Donkey
What will it take for God to get my attention? Does God have to do something drastic like opening the mouth of a donkey so it can speak and tell me I am disobeying God? I love the story of Balaam! I would like to share with you some of the thoughts I had as reading this wonderful account in the Bible over the last few days.
First, it amazes me how God spoke - out loud - to Balaam and told him not to curse God's people but he still decided to go and do it. I think, how could he be so dumb to ignore God! I would never ignore God if He spoke directly to me! But wait - God has spoken to us in writing where we can read it over and over again to be sure we don't forget it and we still disobey!
The next part of the account that amazes me is how God opens the mouth of the donkey and she speaks to Balaam and he doesn't fall over having a heart attack! I think I would have run away screaming! I mean imagine being in your house and all of a sudden your cat or your dog TALKS to you and tells you there is an angel waiting to kill you if you..... fill in the blank of whatever sin. But Balaam just acts like it is an everyday event to have the donkey TALK to him! As I read this I thought about it from Balaam's view point. He didn't know there was an angel standing there with a sword ready to kill him so he was getting angry that the donkey wasn't obeying, that things weren't going the way he wanted. I'm sure he was upset about the delay in getting to his destination.
How many times do things not go the way we planned? How often are plans changed, decisions are made out of our control, maybe someone or something blocks us from doing what we wanted? How often are those detours God intervening in our lives? Maybe it is for our safety and protection, like Balaam's, or maybe it is to cross our path with someone God needs us to witness to or encourage? I am thinking about a few weeks ago. I had my plan of events mapped out where I was going to go on my way to Dillon's doctor. Then my husband called and said he needed me to take him to get his motorcycle from the shop. I was annoyed because it meant I had to change all my plans for where I was going, when I was leaving, etc. But it had to be done so we did. Then other events happened and my plans were altered again. Finally, I decided we would run to McDonald's, then go to a different store, then get on the highway at a different place than planned. We planned to go into McDonald's and I saw I forgot my credit card so I was all upset that I didn't have that and wondering where I left it at home. Thankfully I had cash to use. I went into McDonald's more than a little stressed and just wanting to get to CHOP quickly. While in McDonald's I saw the lady behind me in line point to the sign "TTM" (Talk to Me). The people at McD said "Oh, she's mute get her a pen and paper." I turned to her and in my very broken sign language asked if she was deaf. She said yes and I told her I am learning sign and might be able to help her. I was able to understand what she was saying (she must have been hard of hearing not totally deaf). I told her where I go to church and that I am learning sign there. I was so nervous I think I forgot all my signs and mixed everything up! But I was able to go back to the van and get her Dillon's story for her and her friend.
I have been praying to meet someone deaf and invite them to church for over a year! And I finally got to do so! BUT what if I would have dug my feet in and refused to change plans that day? What if I would have had such a bad attitude about my plans changing, would I have missed my opportunity? Do you think God was in charge of my day and allowed me to meet that lady to grow my faith (knowing He answered my prayer), to encourage me (know I can try to talk to the deaf now, even if it isn't perfect), and to be an encouragement to her and invite her to church where she knows we have a love for the deaf people? I do! I think God was in control of every little roadblock that day!
I have more from the life of Balaam I want to share, but I will share more later. I hope this is an encouragement to you to remember next time something goes wrong that maybe God is working in our life in a way we can't see just yet. Have faith! Look to God for what he wants to show us and wants us to do when something goes wrong instead of getting angry and acting in selfishness.
First, it amazes me how God spoke - out loud - to Balaam and told him not to curse God's people but he still decided to go and do it. I think, how could he be so dumb to ignore God! I would never ignore God if He spoke directly to me! But wait - God has spoken to us in writing where we can read it over and over again to be sure we don't forget it and we still disobey!
The next part of the account that amazes me is how God opens the mouth of the donkey and she speaks to Balaam and he doesn't fall over having a heart attack! I think I would have run away screaming! I mean imagine being in your house and all of a sudden your cat or your dog TALKS to you and tells you there is an angel waiting to kill you if you..... fill in the blank of whatever sin. But Balaam just acts like it is an everyday event to have the donkey TALK to him! As I read this I thought about it from Balaam's view point. He didn't know there was an angel standing there with a sword ready to kill him so he was getting angry that the donkey wasn't obeying, that things weren't going the way he wanted. I'm sure he was upset about the delay in getting to his destination.
How many times do things not go the way we planned? How often are plans changed, decisions are made out of our control, maybe someone or something blocks us from doing what we wanted? How often are those detours God intervening in our lives? Maybe it is for our safety and protection, like Balaam's, or maybe it is to cross our path with someone God needs us to witness to or encourage? I am thinking about a few weeks ago. I had my plan of events mapped out where I was going to go on my way to Dillon's doctor. Then my husband called and said he needed me to take him to get his motorcycle from the shop. I was annoyed because it meant I had to change all my plans for where I was going, when I was leaving, etc. But it had to be done so we did. Then other events happened and my plans were altered again. Finally, I decided we would run to McDonald's, then go to a different store, then get on the highway at a different place than planned. We planned to go into McDonald's and I saw I forgot my credit card so I was all upset that I didn't have that and wondering where I left it at home. Thankfully I had cash to use. I went into McDonald's more than a little stressed and just wanting to get to CHOP quickly. While in McDonald's I saw the lady behind me in line point to the sign "TTM" (Talk to Me). The people at McD said "Oh, she's mute get her a pen and paper." I turned to her and in my very broken sign language asked if she was deaf. She said yes and I told her I am learning sign and might be able to help her. I was able to understand what she was saying (she must have been hard of hearing not totally deaf). I told her where I go to church and that I am learning sign there. I was so nervous I think I forgot all my signs and mixed everything up! But I was able to go back to the van and get her Dillon's story for her and her friend.
I have been praying to meet someone deaf and invite them to church for over a year! And I finally got to do so! BUT what if I would have dug my feet in and refused to change plans that day? What if I would have had such a bad attitude about my plans changing, would I have missed my opportunity? Do you think God was in charge of my day and allowed me to meet that lady to grow my faith (knowing He answered my prayer), to encourage me (know I can try to talk to the deaf now, even if it isn't perfect), and to be an encouragement to her and invite her to church where she knows we have a love for the deaf people? I do! I think God was in control of every little roadblock that day!
I have more from the life of Balaam I want to share, but I will share more later. I hope this is an encouragement to you to remember next time something goes wrong that maybe God is working in our life in a way we can't see just yet. Have faith! Look to God for what he wants to show us and wants us to do when something goes wrong instead of getting angry and acting in selfishness.
Wednesday, March 21, 2012
Haddie's 6 month
Haddie had her 6 month appointment this week... she is 24.38 inches which is the 7% and she is 12lb 10.65oz which is the FIRST percentile. That means 99% of babies at 6 months are bigger than her! That's my girl!
BUT when the doctor saw her scooting on her tummy across the exam bed to get something he said she is way beyond where she is supposed to be developmentally. Someone on my facebook said she is tiny but mighty! I like that!
Monday night we also took her to get her ears pierced. She looks adorable. I will post pictures soon. I think they literally used a sharpie and so the purple mark is still there! I am waiting till the purple goes away to get pictures. We got her blue sapphire, her birthstone, butterflies. It is adorable. it was so sad to see her cry during it.
Hint for other Moms: I had Josiah hold her but I should have held her so he had to see that sad face instead of me!! LOL
Josiah said it is good we only have one girl b/c he couldn't do that again! But this is coming from the man who was never with me for any of Jay's immunizations and didn't have to listen to him cry over that either! I am glad it is done so she will not remember the pain and she looks so pretty. Such a little lady. I'm excited to see my little lady as she grows and matures into a young lady (not that I'm rushing or anything, just thinking of how awesome it will be to have a daughter to raise for the Lord!)
BUT when the doctor saw her scooting on her tummy across the exam bed to get something he said she is way beyond where she is supposed to be developmentally. Someone on my facebook said she is tiny but mighty! I like that!
Monday night we also took her to get her ears pierced. She looks adorable. I will post pictures soon. I think they literally used a sharpie and so the purple mark is still there! I am waiting till the purple goes away to get pictures. We got her blue sapphire, her birthstone, butterflies. It is adorable. it was so sad to see her cry during it.
Hint for other Moms: I had Josiah hold her but I should have held her so he had to see that sad face instead of me!! LOL
Josiah said it is good we only have one girl b/c he couldn't do that again! But this is coming from the man who was never with me for any of Jay's immunizations and didn't have to listen to him cry over that either! I am glad it is done so she will not remember the pain and she looks so pretty. Such a little lady. I'm excited to see my little lady as she grows and matures into a young lady (not that I'm rushing or anything, just thinking of how awesome it will be to have a daughter to raise for the Lord!)
Sunday, March 18, 2012
ER visit
Well we had a trip to the ER today - but it wasn't for Dillon! That's a first!
This time it was for Jay. After church he was running around with his friends and fell into the corner of a pew. I didn't see it happen but I heard him crying and running at me. I saw a little blood below his hands and didn't think it was too bad but by the time I moved a few feet with him in my arms blood was dripping everywhere. I quick grabbed one of Dillon's washcloths and put pressure on it. A moment or two later Josiah and I looked at it and knew he had to go to the ER for stitches. It was about an inch long and open pretty wide. He calmed down pretty quick when I explained to him that crying would make his blood pump more and make it bleed more. We put a gauze on it and started to go to the ER.
And for those of you who know me... yes I almost passed out. I had to sit with my head almost on the ground while Josiah took Jay to the van and brought me back my juice. I had to sit 4 times on the way to the van to keep from passing out too. Why does my body react to trauma like that??? Is there anyway to get over it and not pass out??
Anyways, Jay was great, he was calm and talking to us the whole way there. Thankfully they were able to glue it shut rather than stitch it. The nurse warned him that it would sting but he said it didn't. He was so brave! I am so proud of how well he handled it! He didn't carry on crying and screaming, he stopped within a few minutes of it and was perfectly calm the whole time!
In a week we can start putting vitamin E oil on it to help reduce the scar and were told to put sun screen on it good for the next two years!
This time it was for Jay. After church he was running around with his friends and fell into the corner of a pew. I didn't see it happen but I heard him crying and running at me. I saw a little blood below his hands and didn't think it was too bad but by the time I moved a few feet with him in my arms blood was dripping everywhere. I quick grabbed one of Dillon's washcloths and put pressure on it. A moment or two later Josiah and I looked at it and knew he had to go to the ER for stitches. It was about an inch long and open pretty wide. He calmed down pretty quick when I explained to him that crying would make his blood pump more and make it bleed more. We put a gauze on it and started to go to the ER.
And for those of you who know me... yes I almost passed out. I had to sit with my head almost on the ground while Josiah took Jay to the van and brought me back my juice. I had to sit 4 times on the way to the van to keep from passing out too. Why does my body react to trauma like that??? Is there anyway to get over it and not pass out??
Anyways, Jay was great, he was calm and talking to us the whole way there. Thankfully they were able to glue it shut rather than stitch it. The nurse warned him that it would sting but he said it didn't. He was so brave! I am so proud of how well he handled it! He didn't carry on crying and screaming, he stopped within a few minutes of it and was perfectly calm the whole time!
In a week we can start putting vitamin E oil on it to help reduce the scar and were told to put sun screen on it good for the next two years!
Saturday, March 03, 2012
Day of Pampering
Last Saturday I went with two friends from church to "A Day of Pampering" which is an event that was started by Joni and Friends and hosted by different churches. It is a day for Moms or Wives who are caregivers to a family member with disabilities.
It was AWESOME!
We started with some fruit to eat while we registered then went in for some songs. They had an "interview" time with 3 ladies who were at different stages of dealing with the disabilities. It was interesting to hear the different views. I can see how I used to be more like the one lady, but now 5 years into I have progressed some and was like the second lady, I think. Then we had the "Blessing of the Hands" this was a time where they read a poem - a great poem that I will have to type up later when I have time.
Then we went in for a lunch and then the fun began. There were haircuts, manis, pedis, massages, etc. All for free, you just go and wait in line or sign up and you can get anything you want done. It was such a great time of relaxation!
For those around here that may be interested in it there are two churches that do it:
Mannor Church (where I went)
and
Calvary Church
If you are interested make sure you find out when to register and register THAT day. Mannor church said within 24 hours of opening registration they were full and had a waiting list. They started about 7 years ago with only 20 ladies and now are able to take 152.
It was AWESOME!
We started with some fruit to eat while we registered then went in for some songs. They had an "interview" time with 3 ladies who were at different stages of dealing with the disabilities. It was interesting to hear the different views. I can see how I used to be more like the one lady, but now 5 years into I have progressed some and was like the second lady, I think. Then we had the "Blessing of the Hands" this was a time where they read a poem - a great poem that I will have to type up later when I have time.
Then we went in for a lunch and then the fun began. There were haircuts, manis, pedis, massages, etc. All for free, you just go and wait in line or sign up and you can get anything you want done. It was such a great time of relaxation!
For those around here that may be interested in it there are two churches that do it:
Mannor Church (where I went)
and
Calvary Church
If you are interested make sure you find out when to register and register THAT day. Mannor church said within 24 hours of opening registration they were full and had a waiting list. They started about 7 years ago with only 20 ladies and now are able to take 152.
So I'm a little behind....
What's new? I always seem to be saying I'm behind! With four kids... what can I say?
Anyways, my sister and her family came for a visit. This was the first time the 7 cousins really had time to play together and the first time my sister and I had time together in about 8 years! We were so thankful to get the time to chat.
5 of the cousins
Aunty Hannah gave her this shirt, but she wore it the night they came.
We went to DC with them. This is the A family at the memorial at the Pentagon
S (3 years old)
I LOVE this picture of them!
Our family over looking teh Washington Memorial and the Capitol.
The kids had a blast together! I am so glad they had the time to make memories...
So yes those ages again are 5, 4, 4, 3, 22 months, 21 months, and 5 months - you can IMAGINE our trip in DC.... :o)
Anyways, my sister and her family came for a visit. This was the first time the 7 cousins really had time to play together and the first time my sister and I had time together in about 8 years! We were so thankful to get the time to chat.
Truett (21 months) and M (22 months)
5 of the cousins
Aunty Hannah gave her this shirt, but she wore it the night they came.
We went to DC with them. This is the A family at the memorial at the Pentagon
S (3 years old)
I LOVE this picture of them!
Our family over looking teh Washington Memorial and the Capitol.
The kids had a blast together! I am so glad they had the time to make memories...From right to left: H (5 months) J (4 yr) T (21 months) JD (4 yr) S (3 yr) M (22 months) D (5yr)
So yes those ages again are 5, 4, 4, 3, 22 months, 21 months, and 5 months - you can IMAGINE our trip in DC.... :o)
Tuesday, January 24, 2012
Look out world!
Look out world! Here she comes! Haddie rolled from her belly to her back tonight! It was also her first time in the pool - she really liked it!
Monday, January 23, 2012
Haddie rolling
I didn't want to post this in the middle of all Dillon's medical stuff...
A few days ago Haddie started rolling from her belly to her back!
Jay learned to walk in the hallways of the PICU and Haddie learned to roll in the room on the Pulm floor. What's with my kids hitting milestones while Dillon is in the hospital??
I am so excited to see her growing but I'm enjoying every minute of her being a baby - next time I blink I think she'll be getting married! :o)
A few days ago Haddie started rolling from her belly to her back!
Jay learned to walk in the hallways of the PICU and Haddie learned to roll in the room on the Pulm floor. What's with my kids hitting milestones while Dillon is in the hospital??
I am so excited to see her growing but I'm enjoying every minute of her being a baby - next time I blink I think she'll be getting married! :o)
Home Sweet Home
Dillon came home Sunday afternoon!
We are so happy to be home together. We have a lot of catching up to do this week! Laundry, dishes, grocery shopping, school, cleaning, etc etc etc. But it is good to be home to do all that.
I recalculated Dillon's feeding pump numbers yesterday to be sure he is getting the full amount. It seems it is going to take time to get used to this pump. It keeps stopping on us and doing weird things.
Thank you to everyone who told us they were praying. It made our time there easier to know that people were lifting us up in prayer. And the days when I was most discouraged many people called or wrote little notes of encouragement. Thank you.
I will try to keep people updated as he continues to get better. Please pray with me that when they retest him in several weeks they will find that he is not aspirating so he doesn't have to be on the pump 23 hours a day!!
Thanks!!
We are so happy to be home together. We have a lot of catching up to do this week! Laundry, dishes, grocery shopping, school, cleaning, etc etc etc. But it is good to be home to do all that.
I recalculated Dillon's feeding pump numbers yesterday to be sure he is getting the full amount. It seems it is going to take time to get used to this pump. It keeps stopping on us and doing weird things.
Thank you to everyone who told us they were praying. It made our time there easier to know that people were lifting us up in prayer. And the days when I was most discouraged many people called or wrote little notes of encouragement. Thank you.
I will try to keep people updated as he continues to get better. Please pray with me that when they retest him in several weeks they will find that he is not aspirating so he doesn't have to be on the pump 23 hours a day!!
Thanks!!
Friday, January 20, 2012
Day 10 at CHOP
Another day, another blog.
Today was another good day. Dillon has been great all day. They started him on 18ml per hour instead of the 36 that would be a full amount. He has handled his food fine all day. On rounds the doctor said we would probably go home on Monday. Then later she came in and said that as long as he stayed stable we can go home on Sunday.
We placed calls to get him a food pump so he can go home on continuous food. They plan to keep him this way until he is fully recovered and able to see GI for a repeat milk scan or probe to see if he is aspirating.
The nurse/doctors sent the prescriptions to the pharmacy already so the medicines will be ready when we are. He will be going home on 2 antibiotics through G-tube, one inhaled antibiotic and hyper tonic solution.
Dillon got a bath, had his teeth brushed good and was sitting in his chair for a while this afternoon. Right now he is resting in bed. His heart rate has been below 120 almost the whole day. (Other than when it took 4 sticks to get some blood!) His oxygen has been 97-100 most of the day. Do you know how unusual it is to see 100 on ROOM AIR for Dillon?!?! I really think cleaning his lungs out and the antibiotics are helping him already. I am excited to see if this continues. I am also praying he won't be aspirating when we get the repeat tests!
Thank you again to everyone who has helped, called me, emailed me, sent ecards to the room, made meals, etc. This has been a hard time for the whole family but it is good to see the light at the end of the tunnel.
Today was another good day. Dillon has been great all day. They started him on 18ml per hour instead of the 36 that would be a full amount. He has handled his food fine all day. On rounds the doctor said we would probably go home on Monday. Then later she came in and said that as long as he stayed stable we can go home on Sunday.
We placed calls to get him a food pump so he can go home on continuous food. They plan to keep him this way until he is fully recovered and able to see GI for a repeat milk scan or probe to see if he is aspirating.
The nurse/doctors sent the prescriptions to the pharmacy already so the medicines will be ready when we are. He will be going home on 2 antibiotics through G-tube, one inhaled antibiotic and hyper tonic solution.
Dillon got a bath, had his teeth brushed good and was sitting in his chair for a while this afternoon. Right now he is resting in bed. His heart rate has been below 120 almost the whole day. (Other than when it took 4 sticks to get some blood!) His oxygen has been 97-100 most of the day. Do you know how unusual it is to see 100 on ROOM AIR for Dillon?!?! I really think cleaning his lungs out and the antibiotics are helping him already. I am excited to see if this continues. I am also praying he won't be aspirating when we get the repeat tests!
Thank you again to everyone who has helped, called me, emailed me, sent ecards to the room, made meals, etc. This has been a hard time for the whole family but it is good to see the light at the end of the tunnel.
Thursday, January 19, 2012
Day 9 at CHOP
I came in this morning with all the kids to find Dillon without any clothes on, stiff as a board, bright red cheeks, dark brown being vomited out, and heart rate over 200.
My heart sank.
My adrenaline sky rocketed.
I literally dropped everything and started trying to help him calm down. I went to find the nurse and was told that he had a fever and they were going to give him Tylenol. I was told he had a fever in the night of 103 and his capillary refills were a good 3 seconds and then on rounds the doctors were saying they were afraid he was septic (infection in the blood - very dangerous) so they were going to start him on vancomicine - a very strong antibiotic. I was so heart broken. We were supposed to be going home tomorrow and now they think he is septic! The Attending is so sweet she saw I was confused and upset and came in right away to talk with just me. I just started to cry. She gave me a hug and just talked to me. It is so hard to watch your little boy go through so much. It is so hard to be thinking he is getting better and going home then told that it could be weeks before he goes home!
Right after I got there and started to help him, everything started to calm down. his heart rate came down, his fever came down (by 2 degrees which Tylenol doesn't normally do and it came down before the Tylenol should have kicked in), everything calmed!
A doctor came in tonight and said when Dillon wasn't doing good last night they someone asked about it being a seizure - but she was the one who admitted me and was able to tell them very clearly that she knew it was not even though it looks like one b/c we had a big long discussion about it. More like - I told them I would bring legal action if they drugged him again for something I have clearly told them it wasn't. She was so happy that she was able to prevent him from being drugged unnecessarily. I am so thankful she was here last night and remembered and BELIEVED me! :o)
They wanted to draw blood from his artery but after two different doctors were digging in his arm I said they needed to stop and just draw it from a vein. The phlebotist got it right away no problems at all. Of course Dillon was not happy with every one sticking him.
A sweet friend came up to help and spent most of the day here. Other people called to tell me they were praying for us. One of Dillon's therapists came. It turned out to be a great day! Dillon's heart rate was below 130 most of the day, no more fever, no red cheeks, nothing! I asked his nurse if the antibiotic helped that fast but she said he had calmed down BEFORE his first dose!
My friend took the boys home and is keeping them tomorrow for us. They are excited to play with her. I think they are tired of the hospital after two days! :o)
They didn't feed Dillon all day today so tomorrow they will try to start his food again. That, and his temps, will determine when we go home.
Thank you to all who have been praying. It started as a bad day but it turned out to be a good day because of so many friends encouraging me and all the prayers for Dillon!
My heart sank.
My adrenaline sky rocketed.
I literally dropped everything and started trying to help him calm down. I went to find the nurse and was told that he had a fever and they were going to give him Tylenol. I was told he had a fever in the night of 103 and his capillary refills were a good 3 seconds and then on rounds the doctors were saying they were afraid he was septic (infection in the blood - very dangerous) so they were going to start him on vancomicine - a very strong antibiotic. I was so heart broken. We were supposed to be going home tomorrow and now they think he is septic! The Attending is so sweet she saw I was confused and upset and came in right away to talk with just me. I just started to cry. She gave me a hug and just talked to me. It is so hard to watch your little boy go through so much. It is so hard to be thinking he is getting better and going home then told that it could be weeks before he goes home!
Right after I got there and started to help him, everything started to calm down. his heart rate came down, his fever came down (by 2 degrees which Tylenol doesn't normally do and it came down before the Tylenol should have kicked in), everything calmed!
A doctor came in tonight and said when Dillon wasn't doing good last night they someone asked about it being a seizure - but she was the one who admitted me and was able to tell them very clearly that she knew it was not even though it looks like one b/c we had a big long discussion about it. More like - I told them I would bring legal action if they drugged him again for something I have clearly told them it wasn't. She was so happy that she was able to prevent him from being drugged unnecessarily. I am so thankful she was here last night and remembered and BELIEVED me! :o)
They wanted to draw blood from his artery but after two different doctors were digging in his arm I said they needed to stop and just draw it from a vein. The phlebotist got it right away no problems at all. Of course Dillon was not happy with every one sticking him.
A sweet friend came up to help and spent most of the day here. Other people called to tell me they were praying for us. One of Dillon's therapists came. It turned out to be a great day! Dillon's heart rate was below 130 most of the day, no more fever, no red cheeks, nothing! I asked his nurse if the antibiotic helped that fast but she said he had calmed down BEFORE his first dose!
My friend took the boys home and is keeping them tomorrow for us. They are excited to play with her. I think they are tired of the hospital after two days! :o)
They didn't feed Dillon all day today so tomorrow they will try to start his food again. That, and his temps, will determine when we go home.
Thank you to all who have been praying. It started as a bad day but it turned out to be a good day because of so many friends encouraging me and all the prayers for Dillon!
Wednesday, January 18, 2012
Day 8 at CHOP
Let's see, what happened today...?
- All four children were with me here at the hospital. The boys needed to be with me here, but that has made it more stressful. But I love them and since I have been missing them so much I am happy they were here.
- One of Dillon's nurses came for a visit and spent some time with us, that was a blessing. It is always good to have visitors when you have been here this long.
- Dillon had his sweat test today - I had warned them he doesn't sweat and they were not able to get enough sweat to test
- Dillon has been upset all day and had a kind of bad day since he now has a BAD diaper rash.
- GI wants to do the J-tube but they feel it is reasonable to get a repeat milk scan and probe done when he is back to baseline so we can see what he is normally doing. I asked if he is always aspirating why has it been 2 years since we were here for an aspiration pneumonia. They don't know.
- I got to talk to a good friend on the phone for over an hour and be encouraged by her.
- Its been discouraging today. After 8 days in here I am exhausted, run down, still trying to remind myself to drink enough to be nursing Haddie and I am just tired. I really want to go home, I am glad they are saying we should be going on Friday. Not thrilled with decisions we need to make about the feeds and not thrilled that he will be going home on 3 antibiotics. But I just can't wait to get home.
- I had one friend ask me questions about my post yesterday in a very kind loving way to which I explained my reasons for not liking immunizations. I had another person leave me a comment that discouraged me more. But whenever someone does that it is neat to see how God used 3 other people to encourage me today. I am already emotionally tired from watching them have to prick Dillon and squeeze several mls of blood from his toes - twice today, pull his 2nd IV and place the 3rd, take the 5th or so blood draw, and talking to doctor after doctor after doctor. Trying to remember everything they are telling me, and trying to figure out the long term effects of the different things. I hope my blog isn't seen as negative and bringing people down. That is not the desire of my heart. I was, and still am, upset but I think any parent would be. I may need to clarify that I was not "shaking in anger" like this person thought, I was shaking and crying because I don't like to stand up to someone. I was scared what would happen because I told him to leave I didn't know if my Attending would be mad at me or not, but I knew I could not listen to him blame me for Dillon's bronchitis which has nothing to do with immunizations. I even asked a doctor today if he would have had that one would it of made a difference in him getting sick and he said no. I am so thankful for that friend who called me and just chatted, encouraged me to always be an advocate for my son, and talked about how God's has been working in her life recently to encourage me. I am thankful for the other people God brought into my life today to just encourage me to be Dillon's advocate. I say all this to say I really appreciate your prayers for me right now. It's been a long few days. My whole family is feeling the effects of it as Jay asked Daddy the other day "Did you have to be away from home a lot when you were a kid too? I don't want to be away, I just want to go home and be normal."
- We are going to sleep with the kids at a local hotel tonight so we will be close enough in case there is anything wrong with Dillon. I'm going crazy in this room! :o) But worse yet, I go crazy when I am not with him to make sure he is healthy and safe!
Tuesday, January 17, 2012
Dr. Paul Offit
Day 7 at CHOP was probably the hardest day yet. Not because Dillon is declining, not because he had a bunch of test or even surgery. Today was hard because of a Dr. Paul Offit. Here's how it happened:
When the doctors did the scope on Dillon they took samples directly from his lungs to culture and see what bacteria was in there. The results were positive for several things; including staph, e coli, something that is often immunized against, and something the attending didn't even know what it was. No one knows how he got these bcteria in his lungs. The doctors contacted ID doctors (Infectious disease) to make sure the two antibiotics Dillon is on are enough to kill all these bacteria.
The ID fellow came in and talked with me about how they wanted to stop all antibiotics since he is so good clinically and does not seem to be reacting at all. She said they think his plastic bronchitis was because he is not immunized. She wondered why we do not immunize him and if I immunize my other children. I told her how I knew of someone who had a son with brain damage and it was made worse - both clinically and on a brain MRI - after an immunization. I also told her how Truett went from smiling and sitting up on his own to staring right through us, not smiling, took over a month to start to sit again, and how his hand shook and he couldn't find his mouth to feed himself snacks anymore after an immunization.
She told me to ask her attending if I have any questions since he knows all about vaccines and dedicated his life towards them. I didn't say much since I didn't feel I have any questions. I am comfortable with our decisions.
After she left I knew they were going to keep pushing the vaccine thing so I started to do some research again to pass the time. My mother in law sent me an article that someone "just so happened" to send to her this morning on Hep B vaccines. I posted a quote on my facebook and some friends and I started talking. A friend "just so happened" to send me a link that had resources about what is in vaccines and the effects of them. I "just so happened" to find a link on there for a video that I watched.
The video was from CBS news questioning how independent are these groups that claim to unbiasedly test vaccines to know if they are safe. CBS found that the American Academy of Paediatrics takes hundreds of thousands, even millions, of dollars from the drug companies that make the vaccines. One company even funded their headquarters!
There was one doctor named that was well known to advocate for the vaccines. He is from... you guessed it... Children's Hospital of Philadelphia. He sits on a board here that is funded by a drug company in the amount of 1.5 million dollars! He owns a patient for a vaccine that the royalties sold for 185 million. CHOP made about 150 million off of it and the doctor made somewhere around 6+ million (according to other articles I was reading). This doctor was also quoted to have claimed that it is safe for a baby to be given 10,000 vaccines at once!
Please watch the video - to see for yourself and to make sure the terms I used were all correct. The video can be seen here: http://www.cbsnews.com/stories/2008/07/25/cbsnews_investigates/main4296175.shtml
After watching this video I couldn't believe what I heard. I thought to myself - humm I wonder if I could find this guy here and ask if he would be willing to get 10,000 vaccines at once so I could see that it really is safe.
About 20 minutes later, guess who walked into Dillon's room. THAT same doctor, Dr. Paul Offit! As soon as he said his name I knew who he was. He said again how they don't want to treat him with antibiotics and then started right into vaccination speech.
He told me that I am "putting him in danger by not immunizing him." I knew I would not be able to talk with him so I said You can leave. I also told him that I don't need a doctor to come tell me I am putting my son in danger when everyone is surprised at how healthy he is, how he coughed up the mucus plugs that healthy children can't cough up, how his lungs looked better than they thought. I told him I just saw a video about him. Again I told them they needed to leave the room. I followed them out of the room and Dillon's nurse and I both heard him say in the hallway "Well, that was fun."
I then told his nurse what just happened as I was shaking. A social worker was just bringing me some meal vouchers and I told her that something just happened so she told me that she would probably get a page to come talk with me so we chatted for a few minutes. I also asked the attending from the floor to come in so I could explain why I told this doctor to get out.
One thing I can't quite figure out: If I "put him in so much danger" by not immunizing him and that is what supposedly caused this bronchitis... why did he want to stop treatments? Why did my attending seemed shocked when I told her he wanted to stop the antibiotics and had to go get him to sign off that she CAN continue to treat him?
I was shaking for a while and felt terrible! I never told a doctor to get out of my room before. But I will not have a man, who is basically a politician being paid to push an agenda, tell me that I am putting my son in danger! He knows nothing about me, Dillon or what we do for Dillon. I do not believe I am putting him in danger by not injecting him with 55 vaccines that contain mercury, formaldehyde, anti-freeze, animal feces, animal blood products, etc. in them.
Dillon is extremely healthy for how severely disabled he is and I will not have a doctor tell me I am putting him in danger! How dare this doctor try to bully me into doing what he wanted! Attack me as a parent when all I want is to treat my son as naturally as possible to preserve his liver and kidneys so he can have a long healthy life.
There is a lot of info on Dr. Paul Offit if you google him. Some good, some not so much. I understand he is working to try to make kids healthier. I don't doubt his intentions are probably good. I do question at what point does money skew your view? How much money does it take? Dr. Paul Offit claims money, even his 6+ million hasn't skewed his position. Maybe he just has poor bedside manner to talk to parents like this. I'm not sure, what I am sure of is Dr. Paul Offit won't be seeing my son again.
When the doctors did the scope on Dillon they took samples directly from his lungs to culture and see what bacteria was in there. The results were positive for several things; including staph, e coli, something that is often immunized against, and something the attending didn't even know what it was. No one knows how he got these bcteria in his lungs. The doctors contacted ID doctors (Infectious disease) to make sure the two antibiotics Dillon is on are enough to kill all these bacteria.
The ID fellow came in and talked with me about how they wanted to stop all antibiotics since he is so good clinically and does not seem to be reacting at all. She said they think his plastic bronchitis was because he is not immunized. She wondered why we do not immunize him and if I immunize my other children. I told her how I knew of someone who had a son with brain damage and it was made worse - both clinically and on a brain MRI - after an immunization. I also told her how Truett went from smiling and sitting up on his own to staring right through us, not smiling, took over a month to start to sit again, and how his hand shook and he couldn't find his mouth to feed himself snacks anymore after an immunization.
She told me to ask her attending if I have any questions since he knows all about vaccines and dedicated his life towards them. I didn't say much since I didn't feel I have any questions. I am comfortable with our decisions.
After she left I knew they were going to keep pushing the vaccine thing so I started to do some research again to pass the time. My mother in law sent me an article that someone "just so happened" to send to her this morning on Hep B vaccines. I posted a quote on my facebook and some friends and I started talking. A friend "just so happened" to send me a link that had resources about what is in vaccines and the effects of them. I "just so happened" to find a link on there for a video that I watched.
The video was from CBS news questioning how independent are these groups that claim to unbiasedly test vaccines to know if they are safe. CBS found that the American Academy of Paediatrics takes hundreds of thousands, even millions, of dollars from the drug companies that make the vaccines. One company even funded their headquarters!
There was one doctor named that was well known to advocate for the vaccines. He is from... you guessed it... Children's Hospital of Philadelphia. He sits on a board here that is funded by a drug company in the amount of 1.5 million dollars! He owns a patient for a vaccine that the royalties sold for 185 million. CHOP made about 150 million off of it and the doctor made somewhere around 6+ million (according to other articles I was reading). This doctor was also quoted to have claimed that it is safe for a baby to be given 10,000 vaccines at once!
Please watch the video - to see for yourself and to make sure the terms I used were all correct. The video can be seen here: http://www.cbsnews.com/stories/2008/07/25/cbsnews_investigates/main4296175.shtml
After watching this video I couldn't believe what I heard. I thought to myself - humm I wonder if I could find this guy here and ask if he would be willing to get 10,000 vaccines at once so I could see that it really is safe.
About 20 minutes later, guess who walked into Dillon's room. THAT same doctor, Dr. Paul Offit! As soon as he said his name I knew who he was. He said again how they don't want to treat him with antibiotics and then started right into vaccination speech.
He told me that I am "putting him in danger by not immunizing him." I knew I would not be able to talk with him so I said You can leave. I also told him that I don't need a doctor to come tell me I am putting my son in danger when everyone is surprised at how healthy he is, how he coughed up the mucus plugs that healthy children can't cough up, how his lungs looked better than they thought. I told him I just saw a video about him. Again I told them they needed to leave the room. I followed them out of the room and Dillon's nurse and I both heard him say in the hallway "Well, that was fun."
I then told his nurse what just happened as I was shaking. A social worker was just bringing me some meal vouchers and I told her that something just happened so she told me that she would probably get a page to come talk with me so we chatted for a few minutes. I also asked the attending from the floor to come in so I could explain why I told this doctor to get out.
One thing I can't quite figure out: If I "put him in so much danger" by not immunizing him and that is what supposedly caused this bronchitis... why did he want to stop treatments? Why did my attending seemed shocked when I told her he wanted to stop the antibiotics and had to go get him to sign off that she CAN continue to treat him?
I was shaking for a while and felt terrible! I never told a doctor to get out of my room before. But I will not have a man, who is basically a politician being paid to push an agenda, tell me that I am putting my son in danger! He knows nothing about me, Dillon or what we do for Dillon. I do not believe I am putting him in danger by not injecting him with 55 vaccines that contain mercury, formaldehyde, anti-freeze, animal feces, animal blood products, etc. in them.
Dillon is extremely healthy for how severely disabled he is and I will not have a doctor tell me I am putting him in danger! How dare this doctor try to bully me into doing what he wanted! Attack me as a parent when all I want is to treat my son as naturally as possible to preserve his liver and kidneys so he can have a long healthy life.
There is a lot of info on Dr. Paul Offit if you google him. Some good, some not so much. I understand he is working to try to make kids healthier. I don't doubt his intentions are probably good. I do question at what point does money skew your view? How much money does it take? Dr. Paul Offit claims money, even his 6+ million hasn't skewed his position. Maybe he just has poor bedside manner to talk to parents like this. I'm not sure, what I am sure of is Dr. Paul Offit won't be seeing my son again.
Monday, January 16, 2012
Day 6 at CHOP
Still here! Unfortunately....
Day 6 was uneventful. Dillon is doing well. They took blood from him and had PT and OT come see him. He had to go from 36ml down to 30ml an hour for his food because he continues to vomit. Tomorrow morning at 10:15 he is scheduled for the upper GI. From there we will hopefully know what we need to do to help his aspirations. From my view point I think the best answer will be to do laparoscopic surgery and fix his nissen. I don't know if that is going to be possible or not, but that is what I think is the best long term solution and am praying toward that end. However, God knows what I don't and we do want to pray that God's perfect Will will be done for Dillon in this situation.
I am so thankful for the many wonderful friends we have that are helping with Jay and Truett while we are up here. It is making this so much less stressful! I am so glad they are able to go to our friend’s house and have fun each day instead of going crazy up here with me! :o)
I am also thankful for the visit from one of Dillon's nurses today and from the clinical care coordinator from one of the agencies. It is nice to have some people to talk to.
They said on rounds today to plan to be here till Wed or Thursday. :o(
Thank you for prayers! We appreicate them and know God hears. God has protected him every step of the way. Even though I don't like being here I am so thankful Dillon is stable - at least I am not worried if he is going to make it or not. And in this place that is something you don't take lightly. I'm sure there are many parents right now who are in that very situation. Will you stop and pray for the other kids up here too? God knows and loves each and every little child in this hospital.
Day 6 was uneventful. Dillon is doing well. They took blood from him and had PT and OT come see him. He had to go from 36ml down to 30ml an hour for his food because he continues to vomit. Tomorrow morning at 10:15 he is scheduled for the upper GI. From there we will hopefully know what we need to do to help his aspirations. From my view point I think the best answer will be to do laparoscopic surgery and fix his nissen. I don't know if that is going to be possible or not, but that is what I think is the best long term solution and am praying toward that end. However, God knows what I don't and we do want to pray that God's perfect Will will be done for Dillon in this situation.
I am so thankful for the many wonderful friends we have that are helping with Jay and Truett while we are up here. It is making this so much less stressful! I am so glad they are able to go to our friend’s house and have fun each day instead of going crazy up here with me! :o)
I am also thankful for the visit from one of Dillon's nurses today and from the clinical care coordinator from one of the agencies. It is nice to have some people to talk to.
They said on rounds today to plan to be here till Wed or Thursday. :o(
Thank you for prayers! We appreicate them and know God hears. God has protected him every step of the way. Even though I don't like being here I am so thankful Dillon is stable - at least I am not worried if he is going to make it or not. And in this place that is something you don't take lightly. I'm sure there are many parents right now who are in that very situation. Will you stop and pray for the other kids up here too? God knows and loves each and every little child in this hospital.
Friday, January 13, 2012
Update Day 3
Dillon's upper GI was not done today because he had to stay NPO for the scope, which was more important to get done. They took him down around 1:30 to the OR. Dillon came back to the room from his scope around 6. His lungs looked a lot BETTER than the doctor thought they would compared to how bad his CT scan looked. There was some scars, which she thought there would be. There were no more bronchial tree plugs but they did clean out a lot of mucus, they are planning that he will probably get a fever from it tonight and may have a hard time coughing it all up.
They took a sample from in his nose and in his lungs to culture. They want to treat him with antibiotics for 3-4 weeks and may have to be on low doeses 3 times a weeks from now on, we'll find out more in the days to come. But praise the Lord his lungs were better than planned. She took pictures for me like I asked so I will try to get those soon. He is still resting pretty good from the drugs.
Thank you all for praying. I think we will be making some decisions next week about his G-tube feeds. Right now they do not feel it is safe to feed him like they normally do so they are feeing him 36ml an hour over 24 hours a day. On Tuesday they will hopefully do his Upper GI (despite what they say - parts of medicine DO take a holiday!). At that point we will know if his nissen is still working and if not if surgery thinks they can fix it again. If not, we may have to talk about a J tube. We have not liked the J tube before because it gets clogged all the time, it can only be placed by radiology and it means he will be on a feeding pump 20 our of 24 hours. I don't know if there is a third option or not yet.
They took a sample from in his nose and in his lungs to culture. They want to treat him with antibiotics for 3-4 weeks and may have to be on low doeses 3 times a weeks from now on, we'll find out more in the days to come. But praise the Lord his lungs were better than planned. She took pictures for me like I asked so I will try to get those soon. He is still resting pretty good from the drugs.
Thank you all for praying. I think we will be making some decisions next week about his G-tube feeds. Right now they do not feel it is safe to feed him like they normally do so they are feeing him 36ml an hour over 24 hours a day. On Tuesday they will hopefully do his Upper GI (despite what they say - parts of medicine DO take a holiday!). At that point we will know if his nissen is still working and if not if surgery thinks they can fix it again. If not, we may have to talk about a J tube. We have not liked the J tube before because it gets clogged all the time, it can only be placed by radiology and it means he will be on a feeding pump 20 our of 24 hours. I don't know if there is a third option or not yet.
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