Another year older

Wow time flies! Dylan turned 2 on the 18th and loved every minute of it! He loved the balloons, the presents, the cake, the ice cream, and all the fun running around. Here are some pictures from it.











These were taken first thing in the morning. He is so happy! I will post some pictures of the rest of the party in a little bit.

Rhett's oxygen needs have dropped and that is wonderful! He is on 2 liters and I am grateful that he only needs to take 2 unopened oxygen to school instead of 6. It is easier for him and the rest of the family too. He is doing well, but I wish that he could be doing better.

Nikole is in the after school program and loving it. I pray that she will get better with her homework and other issues that she has. I did talk to her about lying and let her know that she should never do that, since she lied to us many times. She has told the truth since I talked to her about lying. She is a good girl and the world to me. :)

Gavin is learning to share and not to let his temper get out of control. Which helps me since it is hard work when he gets way mad and cannot calm down. There have been times that I have caught him hitting Dylan on the head since he is mad and frustrated that Dylan doesn't listen but then I let him know that the behavior is not acceptable and he had better not do it. He loves playing Zelda with daddy and looks forward to that everyday when daddy comes home from work. It is not that unusual to see Rhett, Gavin, and daddy all around the computer playing Zelda. They have a lot of fun. Nikole does feel left out but I can usually get her doing something else and that helps.

We needed to find a new home for Sara their puppy that they got for Christmas and we are still looking for a new home for Rosa Nikole's cat that is now in foster care. Since the doctor's have said that the pets need to go in order to optimize Rhett's lungs and breathing. It is so sad to see the kids hurt by all of this. The family that took Sara said that we could visit anytime that we are down towards their house and if they are ever close to our house maybe they could stop by and Nikole and Gavin can play with her in the back yard. They are such a great family and I am very grateful to them. Now if I ccan find a family for Rosa that will allow Nikole to visit sometimes, since it was her birthday present and she picked her out herself and paid $10 of her own money for her. That was the only thing that she wanted and she has been so happy with her, but since we can't have her it just brakes my heart. :( I hope we find a home soon for Rosa. Someone that is as nice as the people that now have Sara.

Yeah!!!

So great news! Rhett's oxygen levels are starting to come back down for now. He looks like he is working hard to breathe. It is hard because I think that he is actually having to think about breathing and working at getting as much oxygen as he can in the short breaths he takes. So I guess it is a wait and see thing on how long it will last but heck it is better than he was at. He would like to take it off all together but that is so not happening!

Bad news.... Yeah some people at IHC have made me so mad that I would just like to hit them so hard. But then I think that isn't nice. Well the fact of the matter is the was a medical bill that I didn't know that we had and when I had called to make sure everything we paid they said yes... LAIRS!!! Nope they were sending a bill to an old address that was 9 1/2 years old and calling my in-laws house according to them to get us to pay it but did we receive anything.... NO! I DO NOT NEED THIS KIND OF STRESS!!! After spending 3 days on the phone with different people trying to get this resolved I am so stressed that I still have to deal with it I can barely see straight. It better get taken care of today!

I feel bad for Nikole. Since Rhett needs so much oxygen at school he has to take tanks and it is usually 3 or close to and so we put them in his backpack since it can roll and ask her to help him with his backpack. Sometimes I feel like I am always asking Nikole to help with Rhett's medical need or pick up some slack that I dropped. Luck for me she is now in Discovery Club after school and is able to get more attention and doesn't have to worry about Rhett's oxygen or me asking her to do anything for a few hours after school. She loves it and talks about it often. The only problem is that she will do her homework there but not ask for help from anyone of hte staff there since she told me last night that they wouldn't understand what she needs to do. :( They are there to help you little miss so ask them to help you.

Gavin is teasing Mr. Dylan to the last straw. Just yesterday he was upset I have no clue as to why but ended up throwing a block at Dylan and hit him in the head with it. :( I was not happy I was not happy and had to put Gavin in a time out and talk to him about throwing and informed him that I would not tolerate that kind of behavior. He did apologize but that didn't stop Dylan from screaming all night. He is learning lots of songs and dances at school that he comes home and sings to me which is so cute! Love that he is enjoying school! Pray that he will keep loving it for a while since he still has a while to go.

Dylan is making some steps towards communicating! So happy!! He sometimes will sign with any help at all from anyone. He tries to make the signs with his short little fingers and most of the time I can kind of understand what he is saying but it takes a lot of thought. He was so funny the other day he was trying to run and slide by the front door since he was in his pajamas they have the feet covered and he figured out that he could slide on the floor by the door so that is what he was doing. It was making me laugh and him, what a time I will never forget! But I am thinking of having the doctors to a growth study on him to make sure he is growing at a ok rate since he is still wearing clothes that would fit a 6-9 month old. I know that his little cousin that turns 1 the day after he turns 2 is bigger then him. I just want to make sure he is still growing and didn't stop. I guess we will have ot wait and see on that one. But he is going to see the eye doctor tomorrow and hope for some good news since I don't like bad news.

I will have to update this weekend since I have to go fill out paperwork and stuff.

A new week

Well this is a new week and a scary on at that. Sent Rhett back to school and man I am nervous! The thing is he is on 4 liters and refuses to take his concentrator so he has to have his oxygen changed as soon as it runs out. Oh the stresses! I am so worried... he had a very hard night last night and still woke up early but then fell back asleep just like I did. LOL! Ok so because his machine is beeping all night it keeps me awake. So of course I don't get a lot of sleep and neither does he. What a life! We are both not sleeping but I know that if he doesn't wear the mask that he is suppose to wear at night the doctor said he would end up with a trach and on a respirator. Just the thought makes me cry! What can I do as a mom to help him. I did explain it to him but he is moving around so much in his sleep that it is making me crazy. Thinking of moving for better air quality but the doctor told me that the altitude would make it harder for him to breathe. So should I make him stay in the worst air in the nation or try to get us to a safer place to breathe? hummm... The choices. I feel so torn.

The teacher called to let me know that he had changed the oxygen and it helped me not stress so much, but with these bad nights that he has had lately I can't help but stress even if it is a little. Last night was really hard his machine just keep beeping at me and I am so seriously about ready to put an ax in his dumb machine and get a new one. Holy cow I can hear the machine in my room from his room and that is listening to a movie too. It wasn't that loud but each time I hear that machine I just wonder what is going on with him. He woke up at 3 am and decided he was finished wearing his bypap and put his oxygen back on which I was grateful for. Oh well at least he had his oxygen on. It is hard whenever we go any place we are carrying around tanks of oxygen since he doesn't like his concentrator anymore. Oh that reminds me I need to check on a different one. Oh the things I have to do...

Nikole has been crying every night because she misses Rosa. We dropped Rosa off at a friends house on Thursday the 7th and Nikole misses her so much. I miss her too since she would cuddle with me after all the kids were in bed. She asks everyday if she can go see Rosa and usually it is night so I have to tell her no but I hope it can become a usual stop to see Rosa since the doctors told me that the cat cannot come home. Oh heck! The things that my children are missing out on. I wish I had a room that wasn't part of the venting for the house and was shut off or even another house that was Nikole could have her cat there and take care of her and play with her every day and the dander wouldn't bother Rhett at all. That would be the most amazing thing ever! I just now have to think of to get her this birthday for taking a birthday present away from her. If you have any idea I am so open for ideas.

Gavin is doing so well and is expressing himself more nicely and with words then he use to. He is growing up so quickly. :( Make me so sad because I miss my babies! He did a sharing time with his class today and loved every moment! He was so happy to share what his family does with his class and they asked great questions and was very polite toward him. It was so cute to walk into his class and seeing all the kids doing the chicken dance and then isty bitsy spider and then head shoulder knees and toes. Kids can be so cute when they are all playing and having fun. So glad that he loves to go to school and has some friends there too. :) He loves telling me about his day and for that I am grateful that way I know what he is learning.

Dylan is waking up way too early like Rhett but then I get to put him down for a nap at 9 to 10 am. It is great! :) He was trying to sign a few more signs today and I understood him! I know I am shocked! But it isn't a bad shock. He loves playing and getting attention. I just love his smile! He looks so much like Rhett did when Rhett was little. But he is growing up and I miss having a baby! :( Not a good thing. I am grateful that he is starting to want to communicate more. We will see what we can get done tomorrow since he likes to be a big helper and that isn't a bad thing it is just cute to see him help mommy. :)

Who is who?

Trying to stump you. :) Who is it? If you can figure them out you know us too well. If not they are my twins. LOL

Great Quote!

Ok so before I run to bed I have a great quote that I read to Rhett that I got from a book called Charlie's Monument and I want to share it with all of you.

The Monument

God,
Before He sent His children to earth
Gave each of them
A very carefully selected package
Of problems.

These,
He promised, smiling,
Are yours alone. No one
Else may have the blessings
These problems will bring you.

And only you
Have the special talents and abilities
That will be needed
To make these problems
Your servants.

No go down to your birth
And to your forgetfulness. Know that
I love you beyond measure.
These problems that I give you
Are a symbol of that love.

The monument you make of your life
With the help of your problems
Will be a symbol of your
Love for me,
Your Father.

Blaine M. Yorgason

Small answers

Are you serious! I found what I have been looking for, and I have been searching for it for a long while and I just found it! How frustrating!!! Oh well at least i found it and things will go on.

LOL we will see how I do all this today. :) It surely can't get worse. That being said I need to update everyone on the happening that have helped my house fall apart again! One of these day I would just like it to stay clean for a week without me worrying about it.

Tuesday night around 7 pm the Cardiologist called since I had called earlier that day and left a message on the nurses line. So he was calling to find out what has been going on with Rhett and to see if I had any info. HELLO!!! Does it look like I have INFO?!?! Don't get me wrong he is a great doctor and I am very grateful for him helping my boy but man can doctors be dense sometimes. Well anyway I went into everything I thought that my Pediatrician told him, but no I had to tell him and such. I am starting to get very frustrated with all this denial!!!! Wake up people!!! Ok so after telling him about Rhett's sats dropping and his heart rate increasing he told me that he would like to get another ECHO done and some lab work. Are you serious I have to tell Rhett that they are going to draw his blood? Oh crap I knew we were going to have fight getting him to corporate with them. Too bad we were late and had to have the blood work last. His heart rate was probably racing afterword. LOL!! Oh well I guess it is a good thing that he had the ECHO first. Most of the blood was being shunted from the left to the right in the upper chamber, but there was a little amount going from the right to the left which could explain the possible blueness without the oxygen. But that is only a possibility. Other than that I got great news his heart isn't being stressed and it is looking good other than that. The blood work looked pretty good except..... the Carbon Dioxide is actually very high. He was on 4 liters when they drew the blood! What the heck, how can it be so high? He was breathing complete oxygen so there should be no CO in his body especially that much! We are seeing the pulomolgist on Friday and then we will find out if he should go back to school or not. We will also hopefully have a PFT and such but I really need to find a foster home for Rosa and Sara that way I can prove to the doctor that it isn't asthma that is causing his respiratory distress. I am hoping that I can get them to a home tomorrow and that way I will have my house animal free and the doctors can do their testing and then they will see that things haven't changed any. I will update again on Friday after we get all the info from the doctors.

Nikole is still having a hard time with life and has been very emotional. She is doing well in school but she does struggle with completing her homework on time. I think most kids do have that problem sometimes. She is a busy little girl and loves helping and being a big helper to me sometimes too big. :) I know those of you that have kids will understand.

Gavin is loving school and is going to be turning in his poster tomorrow just in time to bring it home. lol Oh well I tried to stay on top of everything but I can get very over run sometimes. He says the cutest things! For example we were at my parents house for dinner tonight and afterwords we were looking at all the Christmas cards my parents had on their tree that was still up. Gavin would take off a card and say what does this say. There was one card that read in the inside: "May the promise of Christmas touch your heart in a very special way." As soon as I handed it back to him and told him to put it back ans as he was walking back to the tree he said, "This is how I touch my heart in a very special way.... with my elbow." LOL!!! I took pictures and now I need to find the camera. As soon as I find it I will have to post the pictures I have of him touching his heart with his elbow. :)

Dylan is proudly walking and is running!!! I know I cannot believe it. He loves trying to jump and pretends to fall down. So cute!!! He is learning to sign a little bit more and it is so cute to see him trying to communicate more with us. He loves using his hand and will point often to let us know what he wants if he can't get it any other way. He is so cute when he has people that come over to do therapy he will come and play with them just to amuse them and as soon as I say ok finished you can go play he is off and running. :) I am so surprised that he understands so much. Well maybe I am not. LOL

I will post pictures as soon as I can since it is late and I still have so much done before I can go to bed, like cleaning my kitchen and dining room. Not like I feel like I am being pulling in all directions. Oh well I will try to post pictures tomorrow.

Oh sad!

So we have to find a new home for Nikole's cat that was a birthday present for her and the kids puppy that they got for Christmas. :( Makes me super sad to take their animals away from them. When we tell them we have to make sure we don't say we are doing this because of Rhett. I don't want him to feel bad and I don't want his siblings to mad at him for something he has no control over.

The pulmonologist said that Rhett will have to stay home for a while well he starts sleep aids to help him sleep better through the night. I hope that he will be able to return to school but I am not sure he is getting so tired so quickly. He can have over 12 hours of sleep and still be tired during the day while he is doing stuff that is not very strenuous like watching a moving, playing remote controlled cars, playing video games. If he is up and moving around he still gets very tired.

I talked to his teacher and he wants Rhett to go to school and I would love to send him as long as he is stable and since he is having issues up the wazoo it may take some time before he can go back at all to school.

UPDATE: As I was writing this we had to tell the kids about the pets and now I have Rhett and Nikole bawling their eyes out, and there is nothing that I can to to help them get over it. I am tempted to tell the doctors off and just keep the animals. So very frustrated!!! I want to SCREAM!!!!!

I am thinking of finding a friend or friends that would be able to take Rosa for around 6 months and then see how Rhett is doing and is he isn't improving then we will just bring her back. But Sara is going to have to go, and I am really sad because the kids worked really hard on trying to help around the house to make sure that she had a place to play and stuff, but because of Rhett's health that is having a hard time keeping up. Because if we asked a family to take her for 6 months by then she will have bonded with the new family and they with her unless we can find a foster home. That is what I think I am going to do and just let the kids know that this is the plan and tell the doctors what I am planning on doing also. OH THE STRESSES!!!!!!

I talked to the teachers today and informed them of what is going on so that way they all are on the same page as me as to what is going on here. I told Nikole that I would take lots of pictures tomorrow that way she will always have Rosa close to her. I guess I will write more later after I destress some.

Life Happenings

I was going to update earlier but that so didn't happen. So now where are we...

Oh I had the best thing ever happen!!! My sister and my mom came over and I was able to go through so much stuff that was downstairs in my unfinished basement that it is walkable again and I have to just go through papers and shred stuff and file stuff!! I am so grateful for my family and everything that they do for me and my family!!! I am going to go to my sisters house and help her go through stuff as soon as I can. I am not sure if it will be before spring, but I am going to do that and that way we can help each other, isn't what this life is for helping others as you live you own life. If I could I would help everyone I know somehow and it would be great!! Life is great when you help other people!

Ok on to other business, yes I took Rhett to see the allergy doctor on the 31st of December and how lucky I am to do so because we have reached our out of pocket max for our family so I didn't have to pay anything for him to see the doctor of have any testing done. Well they did an allergy test which took about 15 minutes and then found out the following... He has some of the exact same allergies that his daddy has some trees and grass, then the sad part... the cat was the biggest and the dog and horse were the next biggest allergy triggers. Oh wait we don't have a horse, dang it I always wanted one. :) Now what to do??? The doctor did suggest a few things, but my biggest thing with everything is that if we gave the animals away then what... is he going to come off oxygen?? No. Is he going to breath easier? A BIG maybe. So what good would be getting rid of the animals be??? He is on all sorts of medicine because of his breathing and that is why it would not make a difference if we got rid of the animals. the doctor did suggest we bathe both animals weekly and get a air purifier for his room and make sure that the cat never goes in that room which she never does anyway since she is scared of the kids.

So now the thinking of what we need to do begins. Man I wish I could just take a break! Is there anyone willing to walk in my shoes for at least a weekend so I wouldn't have to worry about anything and have a free and clean break from all the stresses of real life? Oh no takers, drats ok I figured not but it was worth a shot. :) Rhett is still on 3, 4, and 5 liters of oxygen and is doing ok on that but gets really tired on 3 liters so 4 and 5 are better for him at the moment but the problem is that the portable concentrator we have will only go up to 3 liters and will not go any higher. Plus he is really hating that machine. The oxygen tanks we have go up to 4 liters but they are depleted in less then 2 hours so we have to change them often. The only one that goes to 5 would be his concentrator we have at home and that one is heavy with no battery etc... In other word yeah right so not taking that one to school. We are trying to figure out of he is going to be able to go back to school and I am thinking not just because I don't want to have to stress about him while he is there and I don't want the staff to worry. I mean it is really bad that he is not coming down from a high liter flow! But if I lower him then he desats and that defeats the point of helping him breathe. even on all the meds he is on now the oxygen levels are still staying high, guess we will be seeing a lot of doctors this month etc...

Nikole was crying at the doctors office trying to figure out if she gets to keep her cat that she got from daddy as a birthday present or the puppy they got for Christmas. She was so distraught and there was nothing I could do to help her understand better. Man I feel like an awful parent! How do you explain all of this to a 7 year old who will be turning 8 this month and not have them hate you in the process? Nikole will be going to school tomorrow with Gavin but I will keep Rhett home until I have talked to doctors and have had him seen and stuff like that. Nikole is doing great at school I just hope she is able to keep it up because if not man it is going to be not so good. When she gets into trouble she will say she is a terrible sister and daughter and slams her door. It breaks my heart to see her acting this way and saying stuff like that. :( When she does act this way I tell her how much I love her and let her know that she isn't a terrible person. I let her know that she is a very beautiful girl on the inside and outside and she just needs to show everyone how beautiful she is because people only see the outside. I give her hugs nad tell her that she means a lot to me.

Gavin can't wait for school to start again! He has been out of school for 3 weeks and is so ready to go back. lol He is such a cutie! If there is anything he likes more than school it is video games. Man him and his brother are so much alike! He has been running to me so excited and tells me that he is growing even without his birthdays. :) Then we check it on the measure thing we have and then we see that he has grown and he jumps up and down and gives me big hugs. He is such a cutie, but he is having a hard time because he fights often with Rhett and Nikole and it gets so bad that he says he is a loser which just makes me want to cry. :( It is so hard for him to understand even if he isn't as good at everything as his brother and sister are he is not a loser. But I tell him that everyday. I tell him that he means a lot to me and that I love him very much.

Dylan is so funny! He has started tapping me and then pointing at what he wants from me. LOL!! Then he signs please. He has been signing food for several words, I am not even sure what word he is using food for. :) He will walk around my house all day and sign food. Cracking me up because I have no clue what he wants. He walks around like he owns the place which is funny. I am hoping that the communication with him will improve past food. :) He loves his brothers and sister so much and it is hard if you are feeling bad to keep a straight face when he is in the same room with you. He has a few people coming out to the house to to therapy with him and I am honestly not sure about the times they are coming so I guess I better go look before too long.

This is going to be a long week and I am not looking forward to it at all. I will have to keep everyone posted when we find out things from all the doctors that I have to get in touch with this week.

Hope you all have a wonderful New Year!!!