People have often asked how I am doing and to tell you the truth I just want to cry! No there are very few people who know what it is like facing what I face every day but most of them are different issues since I don't know of anyone who has what my boys have.
You have no idea how hard it is to talk to these doctors and get as much info as you can and then understand that said info. But when the doctors finally see the results and they can see how bad the results are... you still have to smile because you have your children right there and there is nothing that you can do about that but the doctors face drops into an almost grim face. After going through what I have to go through I often tell people that I don't care, I also will tell people what I think most of the time if I am in one of my moods that let's me just get it out. I feel like such a horrible person sometimes for being honest and mean with people, but heck the petty problems that they face compared to mine are so just that petty. Yes I know that there are many people out there that have their challenges and I know it is hard for them, I understand. I know everyone has problems and they are all different, and that is a good thing. But when you ask for my opinion and you want me to be honest do be so put out if I don't tell you what you want to hear because I can only take so much before I just snap.
You have to understand where I am coming from. We struggle everyday with just getting by not only with money, food, and everyday things but also with the health of our boys. No we don't get help very often because we know of many people that could use it, and feel that they could use it more than us.
But man when we get the rug pulled out from under us so many times often I am ready to throw in the towel and say "screw you, I am done!" How many times do I have to watch the faces of doctors drop and then have them tell me that they don't know? I would love a straight answer for once instead of this I don't know, or we might be able to...
So Rhett asked me the other day when it was just him as me... "Mom if I pray hard enough and want it really bad and have the faith to get it will the lord give me the ability to fly?"
As I looked at him and tried not to laugh since I wouldn't have thought he wanted to fly, but then I remember he does love planes and wants to go on them more. But because of fund not going to happen anytime soon... I looked at him and said... "No sweetheart. The Lord doesn't have the power to give you the ability to fly. You see, people were not created with wings to fly on their own and that is why we have airplanes and not wings."
After he thought about that for a little while he said... "Well if I pray really hard and have the faith will the Lord be able to help get me off oxygen?"
As I looked at him and wanted to cry I said without crying..."Yes honey the Lord has the ability and power to help you get off oxygen. It might not be the answer that you expect but he can do that if that is what you really want."
As I thought about that answer that I gave him I wonder if he really knows what is going on, I mean he is a smarty pants. He even told the doctor that without oxygen he turns blue.
What would you do if you had to face everyday watching your child not breathe right and then find out and have the knowledge that the lungs of your child are not functioning the way that they are suppose to meaning that the lungs are slowly not working anymore? How would you handle it?
Tuesday, August 21, 2012
Friday, August 10, 2012
Happenings
I know it has been a while since I posted and there have been many things that have happened. So forgive me while I catch up on everything that has happened. Let me see where was I???
So the kids have been going stir crazy being at home almost all the time. Swimming lessons for Nikole and Gavin was through the month of June and into July. It has been hard on Rhett and Dylan watching their siblings swim and they have to sit out. Dylan has had it really hard not wanting to go and always saying swimming lessons for him. Luck for them they started a set of lessons the end of the month of July. While Rhett was at scout camp with daddy and my car we had to ride our bikes to swimming lessons which wasn't bad it was great seeing Nikole, Gavin, Dylan, and I go to the lessons. Of course Dylan was in the bike trailer and Gavin was just learning to ride without his training wheels.
Rhett had his exercise study the end of June and he does get higher levels of pressure in his lungs. So they have put him on some medication to help with the pressures. He is still taking his breathing medication. We are also working on getting him to wear his bypap, but he really doesn't like it since it blows air out his ears. I hope that I will be able to get him in to the audiologist sometime to get really good ear plugs just for him to wear at night. I hope, but I am not sure he will since he loves hearing the music playing at night.
Rhett has some very special friends in a non-profit organization that we are with, and they emailed me and asked if they could do a picture for him. Mural is more like it, since when they contacted me they said the picture would be about 4 feet by 6 feet. I measured the wall next to his bed and it was a perfect size! They said they wanted to present it to him at the motorcycle ride that they have every year. He was so excited! When they presented it to him we just couldn't help but grin. He loved it!!! They said that they needed to get it framed and then they would deliver it. While he was at scout camp the first week of July they called and told me that they were going to be able to deliver it!! Holy cow! When we got home from swimming lessons they were there waiting for us. How exciting Rhett was going to to come home and his mural was going to be at our house. He had a lot of fun at scout camp and was able to do many things. I was just happy that he could go since it is lower in elevation, so this was the first scout camp that he was able to attend. He came in and couldn't stop smiling when he saw the mural.
As he was taking swimming lessons these last 2 weeks he has learned to float better, elementary backstroke, and front float. He still cannot go very far since his oxygen cannot let him go very far but still he had a blast. He has had a great teacher that is so excited for him to progress even so slightly.
Nikole was taking swimming lessons through June and half of July. She is starting to swim laps!! I am super excited!! I thought that my kids would never show an interest in swimming like me. I told my kids that when they could keep up with me swimming then I would take them swimming with me. She has been a good helper. She has been spending sometime with her cousins in Idaho and she loves it since they have a cat and girls! She is a little homesick but you know that just means that she really loves us!! She loves drawing pictures and is a great little artist. She draws pictures for Dylan that he just loves! There have been a few times that she doesn't want to help and it makes her frustrated when she has to push the wheelchair, or watch her brothers. I just guess that it is just because she wants to be a normal sister. I can understand. She is going to be starting 5th grade this fall and I know she is sure excited to be going to school again. I guess she has had way too much summer. Ha ha ha!!!
Gavin is doing great at helping around the house and being a great big brother to Dylan. Every now and again he just doesn't want to be the big brother. As he had swimming lessons, he is actually getting better at learning to swim. He wants to swim better than Nikole. I asked him how bad he wants to swim better then her and he said a lot. I told him that he needs to practice lots, so that is what he is going to do according to him. He can be a frustrating little skinny dude but he is sure a cutie when he isn't throwing a fit like a normal child. He will be starting 2nd grade and he is looking forward to it I think. LOL!! Ok so I am a little nervous about him going since he has always had a little bit of a hard time at school. But this year it is going to be better, thinking positive thoughts.
Dylan is a cutie! He has sat patiently through Nikole's and Gavin's swimming lessons. He had a few out breaks of sadness because he wanted to swim. But who could blame him I wanted to go swimming too. :) He was great riding his bike, but while we were riding to and from swimming he had to be int the bike trailer since a little over 7 miles on a 12 inch bike is just too far for that little boy to go. He also had a exercise study and I am still waiting to hear back from the doctors about the results. He is funny and he loves to dance. He was telling me the other day "I am shaking my booty." and I wasn't even sure what he was saying until he had said it at least 10 times and then he was showing me. What a crack! He has been saying things that Gavin has said so not I am in the process of correcting both of them. Of course it is really hard to understand what he is saying until he has said it over and over again, but still. He loves running and he always wants to be first. I think he has learned that from the other kids too. I just found out not too long ago that Dylan's friend from school Autumn is not going to be at the school next year. I don't have the heart to tell him since he has already had a few of his friends graduate and move on the the next school. But there are so many deaf kids at the school they have no room for the hearing kids. He is going to have a broken heart when he finds out.
I will post some pictures next to catch up on everything that has happened. I hope that I have a video of Dylan dancing that way you can see him shake his booty as he calls it.
The boys are going to have a few more appointments this month and we are going to get some answers to so very big questions. I will go into more detail as soon as I can, but for now this is all I have.
So the kids have been going stir crazy being at home almost all the time. Swimming lessons for Nikole and Gavin was through the month of June and into July. It has been hard on Rhett and Dylan watching their siblings swim and they have to sit out. Dylan has had it really hard not wanting to go and always saying swimming lessons for him. Luck for them they started a set of lessons the end of the month of July. While Rhett was at scout camp with daddy and my car we had to ride our bikes to swimming lessons which wasn't bad it was great seeing Nikole, Gavin, Dylan, and I go to the lessons. Of course Dylan was in the bike trailer and Gavin was just learning to ride without his training wheels.
Rhett had his exercise study the end of June and he does get higher levels of pressure in his lungs. So they have put him on some medication to help with the pressures. He is still taking his breathing medication. We are also working on getting him to wear his bypap, but he really doesn't like it since it blows air out his ears. I hope that I will be able to get him in to the audiologist sometime to get really good ear plugs just for him to wear at night. I hope, but I am not sure he will since he loves hearing the music playing at night.
Rhett has some very special friends in a non-profit organization that we are with, and they emailed me and asked if they could do a picture for him. Mural is more like it, since when they contacted me they said the picture would be about 4 feet by 6 feet. I measured the wall next to his bed and it was a perfect size! They said they wanted to present it to him at the motorcycle ride that they have every year. He was so excited! When they presented it to him we just couldn't help but grin. He loved it!!! They said that they needed to get it framed and then they would deliver it. While he was at scout camp the first week of July they called and told me that they were going to be able to deliver it!! Holy cow! When we got home from swimming lessons they were there waiting for us. How exciting Rhett was going to to come home and his mural was going to be at our house. He had a lot of fun at scout camp and was able to do many things. I was just happy that he could go since it is lower in elevation, so this was the first scout camp that he was able to attend. He came in and couldn't stop smiling when he saw the mural.
As he was taking swimming lessons these last 2 weeks he has learned to float better, elementary backstroke, and front float. He still cannot go very far since his oxygen cannot let him go very far but still he had a blast. He has had a great teacher that is so excited for him to progress even so slightly.
Nikole was taking swimming lessons through June and half of July. She is starting to swim laps!! I am super excited!! I thought that my kids would never show an interest in swimming like me. I told my kids that when they could keep up with me swimming then I would take them swimming with me. She has been a good helper. She has been spending sometime with her cousins in Idaho and she loves it since they have a cat and girls! She is a little homesick but you know that just means that she really loves us!! She loves drawing pictures and is a great little artist. She draws pictures for Dylan that he just loves! There have been a few times that she doesn't want to help and it makes her frustrated when she has to push the wheelchair, or watch her brothers. I just guess that it is just because she wants to be a normal sister. I can understand. She is going to be starting 5th grade this fall and I know she is sure excited to be going to school again. I guess she has had way too much summer. Ha ha ha!!!
Gavin is doing great at helping around the house and being a great big brother to Dylan. Every now and again he just doesn't want to be the big brother. As he had swimming lessons, he is actually getting better at learning to swim. He wants to swim better than Nikole. I asked him how bad he wants to swim better then her and he said a lot. I told him that he needs to practice lots, so that is what he is going to do according to him. He can be a frustrating little skinny dude but he is sure a cutie when he isn't throwing a fit like a normal child. He will be starting 2nd grade and he is looking forward to it I think. LOL!! Ok so I am a little nervous about him going since he has always had a little bit of a hard time at school. But this year it is going to be better, thinking positive thoughts.
Dylan is a cutie! He has sat patiently through Nikole's and Gavin's swimming lessons. He had a few out breaks of sadness because he wanted to swim. But who could blame him I wanted to go swimming too. :) He was great riding his bike, but while we were riding to and from swimming he had to be int the bike trailer since a little over 7 miles on a 12 inch bike is just too far for that little boy to go. He also had a exercise study and I am still waiting to hear back from the doctors about the results. He is funny and he loves to dance. He was telling me the other day "I am shaking my booty." and I wasn't even sure what he was saying until he had said it at least 10 times and then he was showing me. What a crack! He has been saying things that Gavin has said so not I am in the process of correcting both of them. Of course it is really hard to understand what he is saying until he has said it over and over again, but still. He loves running and he always wants to be first. I think he has learned that from the other kids too. I just found out not too long ago that Dylan's friend from school Autumn is not going to be at the school next year. I don't have the heart to tell him since he has already had a few of his friends graduate and move on the the next school. But there are so many deaf kids at the school they have no room for the hearing kids. He is going to have a broken heart when he finds out.
I will post some pictures next to catch up on everything that has happened. I hope that I have a video of Dylan dancing that way you can see him shake his booty as he calls it.
The boys are going to have a few more appointments this month and we are going to get some answers to so very big questions. I will go into more detail as soon as I can, but for now this is all I have.
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