Monday, December 27, 2010

Month almost gone

This month has flown by. I can not believe how fast it has gone.

Rhett, Nikole, and Gavin all had a great opportunity this month to be able to go shopping with the Jazz Bear. They were so excited and it was amazing that they were chosen. I helped them make a list since I wanted them to be thinking of others since that is what Christmas is all about. They were so happy to get things for their siblings. There was no way we could have done what they were able to do. Thank you to all the wonderful volunteers that my kids got. We are so grateful for those people that asked us and for those responsible for putting it all together.

That same day we went to a Christmas party and the kids had a blast! While we were there we saw Tangled with the kids and Dylan slept through the whole movie since he hadn't had a nap before. It was a great movie and the kids really liked it. I would recommend it for any family.

After that we went home for a while and then headed out to the festival of trees. We always take the Trax train down and the kids just love it! We saw all the wonderful trees and even ran into the genetic councilor that we see. I was able to talk to her and see what she can do to help us. It was good. Rhett, Nikole, Gavin and Dylan were all great and mostly stayed with us the whole time. Since Rhett was using a wheelchair because he cannot walk very far, we were able to use the wheelchair access to the Trax train. Rhett loved being right behind the driver of the train and looking at everything out the front window. It was a lot of fun.

We has another Christmas party and we were able to meet some new families also. Thank you for inviting us! We had a blast!!

Just recently the doctors said, Rhett is doing ok. Not so sure I believe them. He finally got all of the things he needed for his bypap but he is still waking up in the middle of the night taking it off. On top of which, he ended up with another CT scan since he is re bruising over and over again without being hurt by outside influence. So the doctor set up a CT scan the 22nd. Which happened to be the same day as 3 other doctors appointments. We went to PCMC and had an Orthodontist appointment at 11 am then from there we ran to Shriners for 2 different appointments at 12:40. In between those is when I got the message that the CT scan was set up for 1 pm. WHAT??? Fine! Called and changed the time so then it was set up at 5 pm since we had a doctors appointment at 2:30 pm for Rhett's ear infection. I ended up calling the doctors and letting them know that we would be late since we were still at Shriners at 2:30 pm. HECK! We didn't even leave Shriners until 2:45 pm!!! We raced to the doctors and got seen in between other patients. Yep he has an infection in his ear. Then after we just head right back to PCMC since there is no point going anywhere else just to be back there at 5 pm. So we get there are hang out until Rhett's name was called and he went to get his CT scan. As we sit there waiting and even after Dylan slept on the floor in the waiting room. He had a great nap. :)

From all the coughing and such that I heard in the hospital of course my kids were going to get something. I feel bad since it was Dylan who started and of course he is the only one that shares so we were all sick on the day after Christmas. We were all doing pretty good except for a little sore throat her and there and a little nose needing to be blown every now again. But then it turned into a huge coughing, gross noses, and aches all over the house. Thank you who ever you are for taking you sick children to the hospital and not covering their mouths so that way when they cough it gets everyone else that is healthy around you sick. I try very hard to make sure that I am not one of those people so having that happen to me just makes me really mad at other parents and their kids. :( I know not very nice of me huh? Oh maybe it is because I freeze each time that my son has a hard time breathing at night and he might end up in the hospital.

I hope that no one got sick from my family since I am trying to contain it to my house. It is going to be harder when I get to have a babysitter. I hope I can get everyone better before I need to do that.

Nikole and Dylan share a room so they both get sick from each other very easy. I feel bad for both of them. Nikole has been coughing since she has fallen asleep. I guess I better call the doctors, then the doctors will say no more monkeys jumping on the bed. LOL! I am hoping that I get some info from them besides "It's a virus." ARGH! That makes me crazy when I hear that since there is nothing I can do for those except wait it out.

The kids really enjoyed Christmas and the best part was when they were giving their presents to each other. The grins on their faces were super huge. I am hoping that they will get the understanding that Christmas is a time we give to other and think of others first. After this year I think they are understanding that a little bit more than they were before. I hope that they will hold that tight and give more often. :) Might be wishful thinking but hey I guess I will do the best I can.

Now all the kids are home for the rest of the year. :) Ok that is only till the end of the month but hey that is good as long as they keep the fighting to a minimum. I am not sure if that will happen but here is to hopeful thinking. They have been ok but I guess that is to be expected right? :) Now that Christmas is over there is nothing to look forward to this month. None of them are able to stay up all night on New Year's Eve so I guess they will look forward to the birthdays next month. Wow does time fly.

Dylan will be starting school next month. I am not sure if I am looking forward to that or not but wither I am or not it is coming. I guess all I can do is prepare for it. I will hopefully get the CT scan results this week. The results for the RSV Synagis appeal and the results of the insurance claim on our break in this week also.

Saturday, December 25, 2010

Merry Christmas!!

Merry Christmas!!!

We had a wonderful Christmas and I can go into it tomorrow since I am very tired. I wanted you all to know that I thought about you today and I hope everyone had a great day!!

Monday, December 13, 2010

Long Week

This past week has been very long and almost overwhelming. But I am doing better this week so far knowing that there are things that I am doing this week that are helping.

Rhett has been improving and we are just waiting for items that he needs for his bypap. I guess the doctor when they ordered the new mask they forgot the tubing. Oh and get this after he got the tubing he went to bed with out wearing it! LOL!! Sure showed them doctors!! I guess we will have to put it on him and then have him wake up in the middle of the night and take the bypap off. Not like he is going to be able to sleep with it on, right? Okay maybe on some people they sleep better with it on then with it off but so not him.

Nikole is doing so much better on getting her homework turned in that it just makes me grin! I am so grateful that she is doing better. Her teacher is very impressed with all the things that have been improving with her since the beginning of the school year. Thank you Lord for sending me this child that does improve with the right help and will improve if we continue to help her along. She has been happier all except for Sundays when she has to meet with someone that has a different outlook on life. They seem to just really "not like" in HUGE bold letters. They are at odds with each other and there is nothing that I can do about that since neither one of them listens to me. Gosh what do you know. I did tell Nikole that she only has a few more weeks in that class and then it will be a different class, and she is very grateful. I wonder if the other person is grateful for that also???? Hummm.... Something that to think about, right?

Gavin is such a sweet boy who love to make my day! Daddy gave him money for doing the dishes since he is only 5 and he washed them, dried them, put them away and started to wash more. HOLY COW!! Okay people if a 5 year old can do dishes I am pretty sure we can all do dishes. After he did them he told me that he did them for me so I could spend more them with the family. Awwww... What a thoughtful child! He has been doing great in school since I have asked him and the teacher cause you know sometimes kids just have a habit to just say that they had a good day and then drop the subject. Trying to keep that communication open between us so that I never get that answer.

Dylan was tested to see if he qualifies for an IEP (Individualized Education Program) and the person doing the testing was kind of acting like there was a chance that he wouldn't qualify for one. What the heck does she know?? NOTHING! He so did qualify. IEP's are for children who are special needs and need more help than they would normally get from a regular school classroom. I was just shocked by her attitude towards me before the test and during the test. After the test she seem to act not so snotty toward me, kind of like she had been defeated. I just wanted to tell her, "WHATEVER". I did think it. I know I shouldn't have but I just couldn't help it with her attitude. His IEP is set up and school will start next month! I can't believe that he is already 3 next month. :( I miss my baby. It is cute to see him try to talk or sign to us, and when he doesn't know a sign but wants to know it he hold his hands out for us to help him sign it. CUTE!! He has got to be the cutest little boy in his age group ever!! I know I am so bias but it is true.

I love my kids! I am glad that they chose me to be their mother. :)

Tuesday, December 7, 2010

Struggling

I have been struggling and I am not sure where I can go to get it out of my system. So I guess here is got to be a good enough place as any. I am just dealing with so much stress that I feel like at times I am going to blow up. There has to be some way to just stop stressing but I am not sure how. Trying to remember all the things that need to be remembered is very hard sometimes.

I have been told that the more trials you have the more blessed you are by the Lord. I am very blessed and I am grateful for all of my blessings but there are times when I just wish the Lord wouldn't test me so much sometimes. Maybe everyone has those feelings sometimes, but than again maybe it is just me.

I think a lot of my stress comes from me wanting to do more for other people than I am able to right now. That is one of the things that seems to help relieve my stress that I have noticed. I am doing my best to help others but it is so hard when there are so many in need of things that I am unable to give them.

I have tried to make sure that my kids don't see my stress and I keep that in check at all times. Sometimes I have to just sleep since I might lose it and than all my stress will come out. I have been told not to bottle it up but I can't just lose it in front of my kids can I?

I guess I will take it one day at a time and work on trying to over come this weakness that I have. Things will get better I just know that they will. Ok maybe I don't know that they will but I have faith that they will. It is a good thing that I have faith because if I didn't have that then there would be nothing right?

I guess I will let you all know how it is going and how we are all doing later.

Sunday, December 5, 2010

update on life

So Rhett's bruise is healing which is great!!! But he wants to push himself and so it might come back, who knows. He is doing better but acting very weird, like he doesn't want to take it easy he wants to walk around pushing his wheelchair. LOL!! He did that at the Festival of Trees for quite a while while Gavin was taking a ride in it. But than as we were headed home he keep laying down like he was just so tired that he couldn't keep it up anymore. He was the first one asleep also, so I am guessing that he over did more than he knows.

As Rhett is getting better Dylan has this horrible ear infection and it is really bad to the point that he is on ear drops and oral antibiotics. Apparently he has a big tear in his ear drum and he is really sore. They said that if it still discharging by Monday they will need a sample of it since it has been leaking black stuff and smells horrible. So I think it is worst than anyone knows. The doctor might want us to see the ENT sooner than we want but I could be wrong. He has had an ear infection since October when he knocked out his tube and tore his ear drum. This has got to be one of the longest ear infections that I have ever had to deal with. I sure hope he gets over it soon.

We went to the Festival of Trees and it was great! We went on the Trax train that we normally do that and the kids LOVED IT!!! They were running all over just trying to explore. Nikole and Gavin told us that they would walk through the whole thing and of course they didn't. LOL! We saw some very beautiful trees, wreaths, gingerbread houses, and even quilts this year. This is a tradition that we always do. :) Which is something that they look forward to all the time. I normally do a tree but this is the first year that I was not able to. So it was wonderful for me to be able to go with my family down there and see all the wonderful things that were donated for Primary Children's Medical Center.

This air quality is HORRIBLE!!!! Rhett and Dylan cannot go outside since it is really bad. I have heard that during the inversions here it is the worst air in the nation. That really sucks to have restrictive lung disease and have ot live here and try really hard not to breathe the air. LOL! I can just see them holding their breath and every one else that has lung problems doing the same thing. That is just a funny sight in my head. :)

Nikole has been a very big helper lately and it makes me wonder what she wants. :) It is nice having her help. There was a very normal sibling issue when Nikole was fighting with Rhett and Gavin and as she told me all that had happened she had a melt down and was crying that so hard that I couldn't even understand her. I was happy to see that she felt horrible. They all made up with in 20 minutes, with hugs and playing. She does get along with all of her brothers most of the time.

First thing in the morning Gavin asks how he can earn game time. LOL! That is before he gets breakfast, gets dressed, and before even going the bathroom. :) As long as he wants to play games I guess that is better than somethings that it could be. But he is great at helping and doing what needs to be done in order to be able to play the games that he wants to play. He was really upset that he didn't do all his homework before Thursday so that he could play games earlier during the week. There is always next week.

Love my kids! They are very smart, outgoing, and mine!
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