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.

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!!

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. :)

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.

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!

Sooo What now??

Well Rhett's back is still looking not so good but what am I suppose to do????

I was thinking of taking him to the ER today but decided that the doctors are clueless when it come to him and I will be taking him to the doctors instead. Wow! Not like that is going to be fun. Maybe I will just call and talk to the doctors. :) Even a better idea!!

They do have video conferencing right? Well why can't I have that same thing??? You have any idea how many appointments that would save me from? A ton!!!

It has been snowing since last night and it is still coming down! Holy COW! I know the ice skating rink out there called roads are going to be super fun to drive on. :) LOL!! Oh okay fine I won't hit anything or anyone when I have to leave. Maybe I will call a sick day. he he he

I am so excited about the Festival of Trees!! I am also sad since I will not be doing a tree this year because I could not find a donor this year. But going to the auction is the BEST!!! Glad that my kids will be home with daddy so I can have some girl time. I think we all need that sometime.

There are many people that I have to call tomorrow and set things up with so I better make a list to make sure they all get done on time. :)

I will post more about Rhett's back when I have more info from the doctors. Hope it will be tomorrow. Let's cross our fingers!

The latest ER visit

Monday night...

Well of course he didn't get home until almost 5:30 to 6 at night since he is in the after school program.

Rhett started complaining about his shoulder hurting. (He told me that he said something as soon as he came home but I didn't hear him.) We didn't think too much about that since he was at school today and playing like kids normally play. We told him that he should stretch it out and that it would get better.

So we kinda just blew it off.

Just so you know that is never what a parent should do. I know bad parenting on my part. I will do better I am sure of it. :)

So when the clock said that it was almost bed time of course we tell all the kids to go get dressed for bed. Like normal it took us telling Rhett 5-10 times in order for him to actually do it. LOL! Love the 11 year old behavior.

So after he was finished he came out lie he normally does with just pants on. Of course no shirt, it is just like him trying so hard to be what he considers "cool".

Well as he walks past me to see daddy and something on daddy's computer, I see this mark on his back. HUH??? I asked him to come back so I can take a closer look. It is on his left side right at the bottom of his scars from his surgeries. It was around 2 inches in diameter. Very red looking thing.

Soooo... What the heck is this thing???

He is to the point that he cannot even move his arm. GREAT!!! This is not what I wanted! Ok I am sure that he didn't want this either.

Well my husband and I look at each other and said at the same time... ER. So before I start getting ready to leave and take him up to the hospital I look at him and ask him if he wants a blessing.

He tells me, "Yes. Tomorrow."

So then I have to explain to him that I am taking him to the hospital that night and does he want one before we go. He said yes, so I called someone in my ward to come over and give him a blessing. They were there in less than 5 minutes. They gave him a very nice blessing and then we were able to get in the car and head out. Gavin and Nikole each gave Rhett something to remember them by. LOL!! Way funny, but very nice of them.

We head out and get there in about 10-15 minutes. The parking lot is packed so of course I am thinking that the ER is also packed. Well it wasn't! I know surprise to me too.

This is our first visit to the new and improved ER!! Let me tell you it doesn't do anything for me. I guess I am just used to the old one and the new one is just very uncomfortable.

We get back and they are checking him in and getting all of his body info. The person checking him in is very happy that we came in after seeing his back. I know that there is something wrong and I am not sure what it is. They had to take his blood pressure twice since it was high and it didn't even drop very much the second time either. The took us to a room and then we were waiting.

The doctor came and and told us the plan to draw blood to see if it was an infection. I than asked for a x-ray to compare with the last x-ray that he had. They said ok. The tech came in and got Rhett for the x-rays that they needed. To me something looked off. I have seen lots of Rhett's x-rays and this one looked like there was something just not right. After the x-rays we went back to the room and 2 doctors walked in, they said that they came in when we were at x-ray so they just waited until we got back. They took a look at Rhett and then listened to his breathing. They checked out his x-rays and didn't see anything really abnormal. They did say that there was an orthopedic doctor in the ER that night which doesn't happen that often. They paged the orthopedic doctor to come and take a look at him. Of course by then Rhett could move his arm and refused to say anything about hurting. The orthopedic doctor too a look at one x-ray and then said something to the lines of, "Nothing looks wrong. There is no reason to keep you. If there was an infection that would be a reason that we would keep you. Just talk to Dr. Smith tomorrow and then follow up with him." The ER doctors were so much nicer and more understanding then the orthopedic doctor that we saw. They knew that something was wrong and actually came and asked me what I wanted to do. They did say that they could keep him if I wanted them too but they were not sure if that would do any good. I was grateful that they were so nice and understanding after dealing with the orthopedic doctor that isn't our normal doctor.

We decided to go home and get some rest. LOL!! Yeah right like I could rest! Rhett was feeling pretty good.

I later found out that he was acting kind of weird at school not pulling his oxygen like normal and not grabbing the balls that he was playing with like normal either all Monday. Why hadn't anybody called me? Oh yeah it was no big deal. Oh well nothing like waiting to see. We called our doctor Tuesday and left a message with his assistant. Who than in turn left a message with us, LOL! Phone tag got to love it. Well his orthopedic doctor took a look at his x-rays and was able to compare them with the last one and said that nothing has changed. If there were any problems to call. Well I didn't think of it since it was starting to go away at least that is what I thought. I should have been checking it every day but I have forgotten.

So now it is pretty bad and he cannot move his arm again. Well this has been happening off and on since Monday. The bruise type thing is bigger and darker than it was before. Called the orthopedic doctor on call and talked with him. He said to see if we can wait until later the next day to bring him in, but if it gets too bad to bring him in. So we are waiting to see what is going to happen. Gave him some meds and hoped that the pain would go away but heck you never know. I couldn't go to bed until midnight. But I had to get all of this down before I started to forget anything since it was so much.

I will have to do better so that way it is all down. I will have to post pictures of this later when I have time to take some pictures.

When all of this happened to Rhett, Nikole had a break down and was crying like crazy. I asked her what was wrong and why she was crying. She told me that "I thought Rhett wasn't part of our family and now he has to go to the ER." WHAT?!?! What the heck does she mean not part of our family? I tell her that he is always part of our family and no matter what she didn't do anything to him to make him needing to go to the hospital. She needed some hugs and to calm down a little and then I took Rhett.

Oh the way to the hospital I asked Rhett "What did Nikole mean when she said that you were not part of the family?"

Rhett's reply made me laugh. He said "She got mad at me and now I am going to the hospital."

LOL!!!! Being mad at someone is different than thinking that they are not part of our family.

Love my kids they make me smile. :) I will have to post a little later today to update.

Thankful

Today is the day that is set up to help us remember to be thankful.

Like I am not any other time of the year!

Well I am very thankful for my kids. They wanted to earn game time a be able to play, so I told them that they can earn game time if they helped me get the house all clean for the pending party that we had today at our house. So they said ok. I made a list and said that when all of those things are done on the list they can all play their own game. :) I had Nikole cleaning her room, vacuuming her room. Rhett and Gavin were cleaning their room, vacuuming the hall and their room. They got done before I was finished in the bathroom that they went into the living room and cleaned that room and vacuumed that also. Nikole is a good helping when Rhett is vacuuming she makes sure that his oxygen doesn't get stuck, or vacuumed.

Then later that day they helped clean the dining room table and floor getting it all ready. They did it they did everything on the list!!!! They have earned the game time that I promised them! :) So happy!! Then since it was after 9 pm I told them that they will have to play tomorrow since it is way too late. They were ok with that since they all know that they earned their game time. Then Rhett and Gavin started fighting like there was no tomorrow. :( Not a good way to end a great day. Well daddy then decided that they loose their privileges that they were going to to tomorrow. Which sent them all on a crying trip. So now we are headed onto Friday and hope they can get their game time that they earned. :)

We had a wonderful party with family today and I am very grateful for being able to do that.

I am thankful for my friends and the support that they give me and my family.

I am thankful for the warm house that I have to live in.

I am thankful for the yummy food that we got to eat and that I have in my fridge.

I ma thankful for my wonderful husband.

I am thankful for all the doctors that have helped our family over the years.

I am thankful for so much that I cannot even list them all right here.

I hope you all had a very wonderful and safe Thanksgiving.

Long over due

It has been a crazy month for us and without me being able to get it all down earlier I hope I can remember it all.

Well on the 3rd of November we had the care conference for Rhett. We met with 5 doctors including the cardiologist, genetic doctor, orthopedic surgeon, the pulmonologist, and the pediatrician. We also had the school district nurse, and case manager for IHC that we deal with a lot. There was a conference coordinator and us as his parents. I was thinking that we would have only talked for a half an hour since one for the doctors was available at 11 am but not available at 11:30 am. But it didn't go for only a half and hour it was a hour and a half! I was so happy that we were able to get so many thing talked about.
These doctors actually care for Rhett and want the best for him which is wonderful. They did find out that he has no signs of pulmonary hypertension while he is at rest. The pressures in his pulmonary arteries are in the normal range, the high end of normal but normal none the less. Which is great but not great at the same time. That means when ever he exercises of himself in any sort of way, example: walking up stairs, walking through the school, walking at all will elevate his pressures. More so than it would be of a normal person. He is unable to get off oxygen ever where we are at. They would like for us to be able to check him at sea level to see if he can come off of oxygen there. Well that is something to think about. I think it is time that I look into visiting my sister with Rhett and that way I will be able to check Rhett and get more info for the doctors and us. There is no reason that he turns blue even on oxygen but he does. He is still growing as far as the doctors can see, but they are going to keep a close eye on him. There is nothing more that the doctors can do for him that they are already not doing. They suggest that we keep the surgeries going and more tests so that way they can make sure everything is helping him. Which is a sign of relief so that the doctors will have more info to be able to help them with Rhett's care plan. They believe that the surgeries are helping him but I am not so sure. The prognosis of Rhett is still unknown, but there is a chance that he might be able to live with what he has for a while. I am still not sure if I believe them. Rhett has had his hearing aid fixed finally and was way excited to get it back. He is doing well in school. The PE people with the district have been out to see if that can help with Rhett's PE time. They have rigged something up for him to be able to have PE and be free to move without being tethered. He is so excited, but we are still looking at it to make sure it will not hurt him.

Nikole is doing well. She has been told that if she does he homework on time then she will be able to stay in the after school program since she loves that so much. She is still learning that throwing fits is not acceptable. Lucky for me it only happens every other day. LOL! Ok maybe less than that but still, it is frustrating. She is very smart and is shows often. She is great help when she wants to be. Lucky for me she doesn't need to see the cardiologist for another 2 year if I remember right. :) She did have 2 small cavities and had them taken care of at the dentist. She was a super brave girl and held really still and handled it better than some adults. She is getting her homework done more on time than she used to which is GREAT!!! I am so happy that she is doing that much better.

Gavin is doing great in school and even at home he is helping more. He loves playing with Dylan and it is great to see them play so nicely together. There are sometimes that he does pick a fight with his siblings but most of the time it is provoked. :( We have been working on earning game time as a reward to good behavior. Sometimes it works and other times it doesn't work. He is very smart and loves doing homework! I know can you believe it??? Well he does! He loves coming home on Monday and doing it almost all in one day and then he asks me if he had earn game time. :) LOL! Can't see where his mind is huh? We read almost every night before bed. We do read a lot during the weekend. At least a few hours every day Friday, Saturday and Sunday each. He loves going to church and being reverent and kind towards people in church which I have waited for forever. LOL! Ok not really forever but for a very long time.

Dylan is doing well and loves learning. He is signing more which is great!! It is nice to be able to communicate with him more. He has had several ear infections and is dealing with one now which makes me sad to see him suffer. We are suppose to see the ENT but heck he is all booked up for a very long time. I guess we will have to wait and see. Poor kid he seems to have a knack for getting in trouble and also to hurting himself. He is going to be 3 in a month and a half I cannot believe it!! The doctors are fighting for synagis for him. Which are shots to help prevent RSV from being very severe. I pray that the insurance will cover the shots and approve them for him. It would be a whole heck of a lot cheaper than a hospital visit.

I need to tell Les that I am ever so grateful for her and the help that she has giving me. She is such a wonderful woman who is one of the greatest of friends. Yes I am getting to bed earlier thanks to Les!! :) I will be able to update more often thanks ot Les also! So happy!!! :D

A long few weeks

This has been so hard for me since I have lost my computer. There have been so many things that I need to blog about but I never seem to have the time on the computer to be able to blog. I hope that tomorrow I will have more time since I am falling asleep now. :) I guess that is what happens when you are up for too long huh? I promise to catch you all up ASAP. Thanks for sticking with me through this huge delay in posting.

November

I cannot believe that November is here! It feels like time is flying by and I am jumping days ahead. LOL! I know I missed a few days these last few weeks but when life spins like a bottle you have a tendency to get dizzy.

This cold weather that cannot make up it's mind is driving me CRAZY! I think there should either be a warm or a cold and that it shouldn't flip flop weekly if not daily. It makes kids insane and the stress on the body is a whole new factor that can make you sick if you are not careful.

Rhett is doing good. He has a Cardiac Cath done on Friday and the doctor said that everything looks good. Which is great news but heck that doesn't explain a lot. I asked him then why does he turn blue and he had no answer for that. Also why does he get so tired so quickly with exertion? Again no answer. CRAP! I was hoping for some answers to some of these pressing questions. I guess it is a wait and see thing. He still cannot maintain his SATS and there is really nothing that we can do about that. I am going to ask the doctors about lower elevation to see if that would help. We are thinking about testing that idea but no idea of when we would do that. We had parent teacher conferences this last month and he is above grade level across the board. I wonder if he just likes to take it easy and not push himself to achieve better? I think the only thing that he really needs to work on is some science and language. LOL! That is where he scored the lowest but he above school, district, and state levels across the board!

GOOD JOB RHETT!!! So proud of you!!!

Nikole is so very high strung. I wish that the drama that she likes to display would leave and then she would be normal. :) Oh well I think it is a girl thing but I don't seem to recall acting the way she does sometimes. She is still struggling to get all her homework in on-time if at all. I have tried everything I can think of to get her to do it as soon as she gets home so she is free to play, read, etc... Yet she has no desire to do anything fun. LOL!! She is super smart and I know it and so does her teachers but she is not willing to show what she can do. It is very frustrating for me. We also had a parent teacher conference for her too and she is also at the top of her class. I cannot find her papers so I am trying to remember what they said. :( I do know that she was also like Rhett across the board being at the top!!

GOOD JOB NIKOLE!!! So proud of you!!!

Gavin is trying his hardest o be good at school, home, and church. He has learned the system of rewards. LOL! He knows that when he is good he can earn game time and if he isn't then the chances of playing the game are slim to none. :) Love that he has figured it out but what am I going to do when he gets older and that won't work anymore??? I hope I have time to think about that question. He is learning to read and loving it!! I am so happy!! When I am helping him and he is getting frustrated he says will you help me and the only thing I need to tell him right now is to sound it out. After that he can figure the word out that he is looking at and with a big smile on his face reads it. Then he is so proud of himself for figuring it out on his own. One day he will read to Dylan and it will be great! Oh wait he will need to learn to sign it to Dylan unless Dylan can hear then..... ARGH! I will have to think that through but not right now. :) Gavin is doing great in school and I am so happy that he is working so hard to be good and do what is right so he can have fun after wards. LOL!! Thank goodness for the little things in life that make it so nice. He is also at the top of his class!

GREAT JOB GAVIN!!! So proud of you!!!

Dylan is speaking more and more. LOL! OK not really speaking but he is communicating much more with all of us. He is figuring out that he can get things when he signs to us and that makes him a happy camper. LOL! He is such a daddy's boy that it is not even funny how much of a daddy's boy he really is. He screams and cries if he sees daddy leaving and he is not going with him. He would much rather have daddy over mommy right now and I am ok with that as long as I am not the one changing the diapers. LOL!! Daddy has been working with him to get him to sit on the potty and go potty but it is yet to happen. Mostly because he doesn't tell us when he needs to go. Not sure if he even feels it or if he can recognize that. Not sure what they are going to do when he hits 3 and is still not potty trained. I guess it will be a wait and see thing for sure. I have 2 and 1/2 months left of him at home and then it is off to school with him. Dylan is ready to learn and is enjoying the books that I read to him nightly. He likes picking out books with animals and than looking forward to naming the animals. LOL! Very cute to watch! He will learn lots when he starts school for sure.

I think Dylan might be ready for him to start school but I am not sure if I am. :( I wonder if I am going to feel a little lost since my life is so intertwined with my kids. It was hard with all of them going to school for the first time but the problem is that they were all half day when they started and I was home to greet them everyday. I am not sure if I am going to be home and he is going to be going all day not just half day. They will buss him in the morning and afternoon early to late and I am so sad. I am also wondering if it is because Gavin started Kindergarten and I am just not ready to let me baby start preschool the same year. I don't know I am not a psychologist for myself. All I can do is guess and wonder as to why I am feeling all of these emotions. We have a wonderful person helping us fix our car at a great price and hopefully we will get it road worthy again. LOL! I have been driving a time bomb for so long that it will be nice to be able to not have to worry so much about that. Thank you so very much!!! I honestly don't know where we would be without them. I have been enjoying the time I get to read to the kids at night and have them actually enjoy the book too. LOL! They are books that I picked out, so I know that I like them and am willing to read them to my kids. :) Soon I will be going through the Harry Potter series again and the kids will be listening. It is going to be great! I will have to update again soon to let everyone know the info that we get on Rhett. Hopefully it will be useful information and we will know more than we do now.

Halloween Pictures are here!!

Ok I know you waited a long time to see these so I can finally tell you the wait is OVER!

Rhett is......

Have you guess it yet?

How about now? Ok one last picture to help you. :)

You better have gotten it by now. You are right he is MARIO! :)

Nikole is........

Can you tell what she is?

How about now? No well only one more picture to help you figure it out.

Did you guess what she is? If you guessed GUM BALL MACHINE you are right! :)

Gavin is........

So what do you think? Do you know?

How about now? If you haven't there is one more to help you out. :)

If you haven't figured it out by now you have never played video games. :)
LOL If you guessed LUIGI you are for sure correct!

Dylan is.........

Any ideas who he is? If not you only get one more try since this one is a piece of cake. :)

Well is you are right it is COOKIE MONSTER! :) He just love cookies!

I am glad to have had the time to share this with you. As you can tell some of my kids were way excited about Halloween and others were very much not. LOL! Thanks for waiting and being so patient with me as I try to get them up in a reasonable amount of time.

Update on photos

Ok so I did take some photos of the kids in their costumes but I have to be able to get them on the computer. That is when you will see for sure what they are going to be. I know many have asked what they are going to be and I am not telling. :) I hope to get them online tomorrow afternoon that way you can all see cute little photos of them.

I know not a very long post but there is not much I can do right now.

My bad

I am so sorry that I have been horrible at updating here. :( I will try harder to update more often since thing around here are getting crazier and crazier.

Rhett is doing ok for the time being. He had his first UEA without surgery and I was shocked and how I felt about not having it. He was fine playing with sick cousins. (Me praying that he doesn't get sick.)
He just really hate his oxygen and there is nothing that can be done about that. He will see pictures of himself without it and then tell me that he wants this and points to his face without the oxygen. I just have to look at him and tell him sorry but no and if he starts to whine(since he has in the past) I then I have to tell him too bad no choice.
I know I am such a mean momma huh?
I really think his attitude is going to drive me insane!

We have a few more weeks until Halloween and I have already finished all the costumes!! I am so proud of myself! :)
Rhett is going as.....
I will have to post pictures hopefully tomorrow since they get to wear their costumes for a thing. Long story....
So I guess I am going to leave you hangin. :D ROTFL!!!

Nikole is still struggling with things that I remember Rhett struggling with. It makes her crazy when he tells her that it is easy and that he can do it just fine. :) I am not quite sure they understand each other. Maybe one day right?
Nikole is a crack up... She chose the shirt she wore on picture day. There was no way I could talk her out of it. Of course it is stained and really not very pretty.
So today they got their pictures back. I pulled them out to show her that she has a great smile and her hair was nice and done. The first thing that she notices was her shirt and she tried to cover it with her hand. Ok that was funny and it took all my effort to keep a straight face and inform her that she was the one that chose her shirt. She looked shocked and then a smile spread across her face. After thinking about it for a while like about 3 hours of thinking of it, that smile faded and she looked sad that she would do something like that.
I did inform her that picture retake day would be coming up and she could have them retaken if she wanted. She looked so relieved.
Nikole is super excited for Halloween!
Nikole is going to be....
Again I am going to have to post pictures and then you will find out.
Love leaving you in suspense. :D

Gavin is doing great in school and I have a great talk with his teacher. He is ready to read. I hope and pray that when he can read better that he will leave playing video games and obsessing over them will come to a slow crawl. LOL!! Like I said hope and pray.
He is doing so well and it is just because he has been told he can earn video game time by being good at school and home and then getting all his homework finished.
He has only had one problem at school this year so far! KNOCK ON WOOD!!! :)
He is just going to get better and better!! I just know it, since he can only go up right?
He is also going to have his picture retaken since he didn't want to smile very good for the camera and then to top it off he got food all over the front of him right before pictures.
Of course he was the one who noticed the food first and I was the one that noticed his smile.

How is it that Rhett's picture and Dylan's picture turned out great but the other 2 need to be retaken?

Gavin is so excited for Halloween! You should have seen his face when we tried on his costume the other day when I had to finish it. I don't think that there could be anything in this whole world that would have been able to wipe his smile off his face.

Dylan is doing better then he was. He is signing more and more. So I am guessing that if you are family I would recommend you brush up on your sign language. Since that is going to be the way he talks for a very long time. Yes he will have speech but I cannot see that helping much.
Dylan doesn't like his costume very much. Too bad little boy you are going to have to just get over it. Am I right? Yes I am!
Dylan is going to be...
You are right! You will have to wait and see.

I would so update more but I am getting so tired. I think that this 3 am stuff is really not good for my body. What do you think?

What more???

So on Sunday Morning I woke up and saw that Mr. Dylan had a bump on the side of his face next to his eye that he had surgery on. I asked all the kids what had happened and they of course didn't know so I didn't think much about it. He was running around and playing like he normally does so no worries right?

Than Monday morning I was holding him while he had his cuddle time and he put his head down on my arm and just sat and loved me. What a wonderful time I have when that happens. But the last thing I expected was... feeling wet on my arm when he finally moved his head. I looked down thinking he slobbered all over me. LOL!! Well I didn't see slobber I saw a big blob of blood on my arm.

Oh great it is a good thing that I was awake because if I wasn't I was then. I looked at Dylan and saw that nothing had changed over night... so where was this blood coming from? As he turned his head I caught the sight of blood all over his right ear. OH MAN!!! This has got to stop! As I frantically look for a phone to call the doctors office. Lucky for me he was acting fine but still I was worried since he had an hearing appointment the very next day. ROTFL!!! Yeah right no hearing appointment for him! Every time I set an appointment for his hearing something always happens to his ears no matter what.

I take him to the doctors praying that it isn't anything very super serious. I was able to get them to work me in and then took him in. As he was being checked out I noticed that his Whole side of his face was more swollen than it was yesterday. Also I was asking the doctor about so many things being as nervous as I was. He checked in Dylan's ear and found out that he had knocked it out and by doing that ended up tearing part of his eardrum. That is what caused the blood. Lucky for me that he wasn't in any pain. After the doctor found his ear the way that it was, he told me that if he had not found anything he would have had to get a scan to look for a fracture since that would be the only other option that would explain the blood.

He slept all afternoon and didn't wake up until after school. I am glad that he is doing better, but man I would like to know how he hit his head to begin with.

Let's just hope I don't get any extra surprises today.

Holy COW!

It has been a long week!!

I have been home and my husband has been out of town. So I was very computer less and it has been so very hard for me. :( I really miss my computer!!!!

Rhett has turned into an almost teen! He is trying to control Nikole in a whole realm of things that they do together. I wonder if he even knows that she is smart just like him??? I was racing him books but he decided that he didn't want to race anymore. :( Very disappointing... Oh well just my luck! He likes to complain about life now days and it gets to the point I can't stand it! I just want him to stop since I can't change the way he is and nobody can. Then I wonder if I am a good parent for even thinking the things like that.

I feel like there are some people out there that think my sons condition is all my fault and they feel like they can fix him. To them I say GO AWAY!!! It is not my fault and I don't need you to think that you can fix him since I know that you can't!!!

Okay...

Now that that is off my chest. :) LOL! Yes I know the hard knocks of life are hard but what would we learn if they were easy?? Ummmm.... Nothing! That is right. :)

Nikole is having issues with school work being too easy and then it is too hard. I wish that she would make up her mind. She doesn't like doing her homework since it is things she already knows. Then I ask her if you don't do your homework how is your teacher going to know that you know it already? She just stares at me with a blank look. LOL! I should get a picture of her like that. She has also been whining that like isn't fair. Holy cow girl are you serious? When did you notice? :) I try really hard to get her to understand that her whining isn't nice to listen to and I would prefer if she were to whine in her room by herself instead of where everyone can hear her.

Gavin is getting better at writing his letters and is enjoying wanting to surprise his teacher with his writing. :) I was shocked when he decided that he wanted to do that, but it was a good surprise. He doesn't like doing his homework every day but rather like in 2 days he will do it all so it is over with. Wait until he finds out that there are teachers out there that don't give you a weeks worth of homework in one day and then expect it back the end of the week. But rather they give it out every day expecting it back every day. LOL!!! I can't wait! He loves reading but he would rather stay up late and have me read to him then instead of during the day time. Go figure! Lucky for me he has had less fits at school and that I am way excited about!!! :D

Dylan has just exploded signing and I am just happy to be able to communicate with him!! :) It happened not even 2 weeks ago, so we are all adjusting to his new way of communicating. It is nice to see him trying to learn and trying to communicate with us. He love a new thing and wants to tell everyone that he meet about it. Which so happens to be Blue's Clues. He does the dances and shows off what he know which is actually a lot since they do a lot of visual things on that show. It is very cute to see. :) I am hoping to get some video of him doing the things that hs does for Blue's Clues and posting them when I have time.

Things are crazy busy here and hoping that they get even busier since I am going crazy feeling like I am not doing enough. We shale see what this month has in store for us.

No pictures

I know it has been a while since I posted pictures but I have no way of getting them off my phone on onto the computer that isn't even mine computer. :) It will still be a while until I can post some more pictures. It is really hard just doing nothing so I am doing everything that I can to get busy and stay busy.

Right now I am in the process of racing the kids reading to see who finishes their book first. LOL!! As it stands right now I am winning but Rhett is in close second and Nikole is in third. Of course Gavin and Dylan that cannot read yet I am reading to them almost every night. Rhett is in the middle of Leven Thumps #5 and Fablehaven #2. Nikole is in the middle of Harry Potter #4. I am in the middle of Eldest. I found out that there is a book 4 in that series and I am so sad that it isn't even out after 2 years. :( Oh well I still have book 3 to read before book 4. LOL!

Rhett has been reading for 4 hours today trying to get ahead of me and trust me it isn't going to work. Wah ha ha ha ha!!!

Talked to the doctors today and told them to set up the meeting in November and them let me know since the last test will be done in October. I am needing info that I feel the doctors just don't want to give me info. There are a few assistants that have been trying to help me but still it isn't enough. Hope that we can get things set up before the end of the month that way I know what day I have to get a babysitter so I can go to the meeting also.

It is so hard waiting my turn at the computer. I can only use it after my husband is finished using it since it is his work computer. We are still working on filling out the papers needed by the police and the insurance. We will get it all done with it by the end of the week no matter what! :) Can you see my positive vibes?

Will update when I can and maybe something will change by then. he he he!!!!

Just stuff...

Oh so frustrated!!! I was really hoping for some answers but instead I get to wait. Don't the doctors understand that I hate waiting? Well maybe I should make them wait huh?

It was such a long day today since we didn't have very much going on today since there was no school. The kids didn't even get the house clean. LOL!! Ok I am not a mean mommy making my kids clean the house all by themselves but they do need to clean their own rooms. They need to learn that I am not the maid in the house and everyone works together.

I know that is sometimes expecting too much but heck all I want is my floor back. :) Rhett and Gavin are pretty good about cleaning up their room and working together when they want to... Nikole on the other hand is struggling with the fact that she needs to clean up her room. She wants some help so I figure I would let Dylan help since they share a room. ROTFL!!! Ok now we all know how good a 2 year old can help. She doesn't like having Dylan help very much since he likes to play and make messes.

I guess they will be cleaning up the house tomorrow. Wah ha ha ha!!! Little do they know what is in store for them. :) I feel like this next month is coming on too fast and I am trying to so hard to tread water. I am getting so tired of treading water. Let's just pray that I will be able to figure out how to swim before I drowned.

One day at a time

Okay so I am rambling I know it. But I am not sure what to do...

We had our 13 year Anniversary and it was one of the best ever! I got some beautiful flowers with a wonderful card, that I will have to post a picture of as soon as I can. Then he had arranged for a babysitter and we went out. We walked and talked, we went out to dinner. It wasn't fancy or anything like that but it was just nice being together and talking and just basically spending time together.

It is so hard not knowing what is going to happen a week or more at a time. I really miss my computer. :( I hate staying up late waiting my turn for the computer when I have had mine for over a year and a half. I just wanted to cry the other day when Nikole asked me if this cat in a book that she has is like Rosa and I realized her final moments with her little girl kitty were captured on the camera but all the pictures are on my computer other than what I had posted. That was the biggest heart ache that I have felt since after the break in.

Rhett is scared that the people are going to come back and break into our house again. He also told me that they took things out of his room in his closet. Which I did look and they did in fact that they took things out of his room but I have no idea what.

Nikole just wants to be a big helper but sometimes I wonder. LOL! She still needs to learn to clean her room, I guess she gets that from her daddy. She is still not wanting to do her homework as well as I want her too. Oh well Rhett didn't either in 3rd grade.

Gavin is really enjoying his class. He was so proud of himself after school yesterday since he had gotten 2 stars! He is really wanting to get 3 stars maybe one day he will get them all but for now I am happy with 1 or 2 stars. :)

Dylan does the cutest little dances when the kids are at school. He has been watching Blue's Clues and he does all the dancing that he sees and he even points out the clues. It is so cute! I hope I can get a video of it and post it. I know you would all get a huge kick out of seeing him do his little thing. :)

There have been many times these last few weeks that I am lost and not sure what to do. I am grateful for the support of my family. I guess since I don't have my computer I will be doing something anything to stopping this feeling of uncertainty. It will be a wait and see thing I guess. Thanks for letting me ramble and get this all out.

This bites!

So I have been home with no computer all week and man it totally sucks! I thought that I was going to handle it well but man I went stir crazy. I check my email and there are over 400 messages. :o That was bad and it took over 2 hours to go through. I have been working on the police and insurance papers. It is taking longer than I was hoping. I have to just get it done and turn them in ASAP.

Met with the genetics this week and that was hard since I have no new info and neither do they. :( They are going to be getting a hold of the doctors in Washington DC to see if they have found out anything or if they need to fly us down there again for another go around. He is also going to find out if they can get us a case manager at the hospital to get all the doctors in the same room to talk about Rhett and what we can do for him. It won't be until later this year. I wish that we could have some answers now but if I can get them by the end of the year that is great.

Nikole told me the other day "Did you know that in my class they push you?" ROTFL!!! Of course they are suppose to push you. I told her that is is better to be pushed and learn new things every day than it is to be bored out of your mind in class all year long. Of course she doesn't think being bored all year is all that bad of a thing and would much rather be bored. :D She cracks me up! So we asked Rhett which one he would rather do be bored or be learning new things everyday and he told us that he would rather be learning everyday. Go figure the one that already knows everything would like to learn everyday. :)

Gavin is having some issues at school and he told me that he didn't care. WHAT?!?! He better care! He is only starting school and already acting this way. :( It looks like I got my hands full. He is really enjoying school but it is mostly struggling with emotions. I wish I could help him more but I am at a loss. I am trying and so is his teacher but there is only so much that we can do. He is such a sweet boy and likes to cuddle with me in the morning when he wakes up. Makes me feel so special. :) He loves teaching Dylan new things and he often has to get in trouble for teaching bad behavior. That is ok he is learning.

Dylan is the funniest kid on the block. :) Still not talking or signing but loves the facial communication that he displays. He loves learning and is way smart, but it is too bad that he doesn't want to corporate when they are testing him or trying to work with him. He wants to be a big kid and tries to do big kids things but he is so small. I don't think that he realizes that yes he is old but not as big as the same kids his age. I hope he is not coming down with anything that is going to need any hospital time. I like not being in the hospital with sick kids.

I will have to update more often. But until I get a new computer I will update when I have a chance.

Just want to cry....

Well if you are my friend on facebook you already know that my house was broken into today. :( I know I have been very emotional and scared and hurt and there are many more things going through my head.

To recap the day...

Rhett had 102 degree temp this morning and so I put my foot down and told him that he was not going to school. Called the doctor and got an appointment for 10:20 am. Well that is good considering I am under a lot of stress and having a sick child doesn't help with the problem.

So I have been running around through the morning to get all the boys out and to the doctors in time. Well we were off at 10! Yeah we might actually make it on time. :) I think that would be amazing...

So we get there and hurry and wait. Just like any other normal family visiting the doctors office. I was just hoping that we could be done so I could take Gavin to school since his class starts at 11:45 am. The doctors finally sees us and just our luck there is no reason that Rhett should be having these fevers. They are going to be treating my boys for walking pneumonia. Just what I wanted. NOT!!!

Well we are out of there and it is 11:35 am! Hey we might actually make it to school on time. This is working out better than I thought it would. :) So I run Gavin in and get Rhett's homework and then take my other boys home.

We drive into the garage a little before noon. I walk in the door and see that the gate to my stairs is off. My first thought was that daddy came home looking for something downstairs. I look in my kitchen after I put the gate back up, and don't see my computer. Was I sitting in there with that this morning? Well as I am thinking of that and after my boys came in from the car I walk into my living room. My front door is open. HUH? Why would that be open? Maybe daddy forgot to close it. As I take a closer look I realize that it had been kicked in. I grab the phone not knowing if there is anyone in my house besides us or not. Called 911 since I was panicked not knowing. Was told to go outside and wait for the police. So me and the boys go sit on our front grass. I call my husband and told him and asked that he come home. He did which I am so grateful for. The police arrived as I was on the phone with my mom trying to calm myself down knowing that my kids would feel the stress in me if I didn't.

Well they walked through the whole house and found nobody. Very sad that they didn't find anyone but grateful that me and the kids were safe... well as safe as I could be considering. After the police were finished searching the house we went in and found out that besides my laptop that was taken, my husbands coin collection, my FIL coin collection that he gave my husband was taken, Rhett's bag of money was taken, game platforms for video games were taken, and video games themselves were taken. The people or person that did all this went through all my drawers and took everything that they could get their hands on that was of value to them. My heart aches to know that my laptop was taken. I have my business on that and all the pictures that I have taken and have not posted are on there. :'( I am praying that we can at least find that.

I really don't want to clean up my room because I think I will have a break down just thinking about what has happened. I have been crying off and on lots and it is getting to the point that I wonder if I would be able to stop if I just let it all out. Hummmm.... I guess one day I will find out this vital info.

If anybody that reads this can help me by keeping an eye out for my Lenovo laptop I would be most grateful. I seriously need that. That is were I have my calendar since my kids kept taking my paper one. Please keep us in your prayers and thoughts during this hard time. Thank you all for caring so much.

Oh man!

Heck trying to get all the kids to do their homework is harder than I thought.

I talked to the teacher for Rhett this year. I let her know that he really needs some educational goals since he has not had them in... I don't even know the last year he had educational goals. :( She told me that he is the smartest kid in the class. How the heck did that happen?

I talked to the pediatrician and let him know of all the things that we have been through. Let him know that I have a cardio cath set up for Rhett and after that we are having a pow wow with the doctors to get a care plan for Rhett set up. I asked him who else should be involved and he also wants the genetic doctor there. FINE! I will be seeing him later this month also. I will let him know what is going on and then we will go from there. I just don't understand... they claim that what the boys have is genetic but have yet to prove anything.

I would really like some solid answers from these doctors. I know Rhett is getting more and more aware of himself and that makes it even harder when he wonders what is going to happen to himself. I wish I had answers to give him. I guess if I cannot get answers I can always try a second opinion but I am not sure who I would ask.

As I am writing this Rhett tells me that he is freezing. So of course I feel his head and he is frying up! I bet I could have cooked a egg on his head. I take his temp and it is 101.3 F. Great now he has a fever and it is the 2nd week of school. Well I guess it shouldn't surprise me since one of his cousins had strep and another one was diagnosed today with walking pneumonia. GREAT! Just what I need, NOT! Oh well. It just makes me smile since one of the boys in Rhett's class asked me if he gets sicker easier then them. Well let's see.... uh yes he does. But then he shares with his baby brother and between them it is a very fine line. Great I guess no school for him and doctors first thing in the morning. I guess I can be there by 8 am... right? Well I would have all 3 boys with me. HECK NO! There is no way I am going to make it that early in the morning, but I will be calling them first thing in the morning so I can get them all see and that way we can kill what ever they all have except Dylan. He is the only one not sick at the moment. I was going to get them in soon for the flu shot but I think that will have to wait.

Nikole is just like her daddy she waits until the last moment to do her homework and then when she does it is sloppy and needs to be corrected. I am so glad that isn't like me. I know that when I was young I would get my homework done ASAP since I knew I could go play after I finished.

Gavin got his first homework this week and lost it. He was working so hard on it and yet now it is no where to be found. Man I thought we were off to a great year... Ok be positive... Things will get better his homework will just appear out of air. :) Oh ok that is too positive. Well then I guess I will be talking to his teacher and getting another packet for him to start working on again, but that just means he is going to have to do even more than he bargained for since it all has to be turned in Friday. :( I might ask his teacher if I can feel out the info that he worked so hard on with the last packet and have him finish the rest. Maybe I guess I can hold my breath.

Dylan oh Dylan what to do with you???? Just because mommy wouldn't give you chocolate cake for breakfast or lunch does not make it right to get a permanent marker out and draw on the kitchen counter, the cake box, you hands, your arms, you back, you belly and you face. Goodness I think that people think I don't take very good care of you since you are always getting into the things the other kids leave out like scissors and markers and crayons and glue. I try realy hard to take care of you but you need to learn that those things are not for you and they are also not toys. You draw on paper not the walls, yourself, and any other hard surface that you can find. You don't cut clothes, or toes, or walls. You cut paper and that is after mommy makes sure it is ok for you to cut it up. You don't glue anything! Sorry I have to draw the line somewhere. :) I do love you dear child but goodness what am I going to do with you?

I promise I will up date better. I know that there are some people out there that are holding their breath waiting to find out about my little people and how they are doing. I will be better and hopefully it won't be bad news.

31 in 31 day 31!

Yeah the last one! I cannot believe it!

This is one thing that my boys love doing. :) I know it isn't the best picture but it is the only one that I got while they were playing.

It was fun being able to do this. I would have been able to take better pictures if my camera would have been working but that is ok I got through it ok. Now I just have to catch up on all the other things I have been think that i need to get out. :)

31 in 31 day 30

We went to a movie with Hope Kids and the kids all get get a box of popcorn and a small drink. they loved it! It isn't everyday that we get to go to the movies. After the movies what ever popcorn we have left we go feed the ducks.



When we were feeding ducks we saw some huge fish. I was able to get a picture of at least one fish I didn't scare away. :)

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Almost finished! I cannot believe that it has been that long ago when I started this.

Well this was a picture I took before the bungees got lost. But this is what Rhett takes to school everyday. It is more durable than the portable concentrator. He will be using it for a while.

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Ok so this is what I see sometimes in my back yard. To bad that the kids scare them all away before I can get a picture of them all on the ground. :) LOL Love kids running through birds.

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Oh the 1st was Gavin's first day of Kindergarten! He was so excited!! I am just really glad that he had a great day! I can't believe that he is getting so big! One day I will look back and say, "I remember when you were so young and small." :)

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Nikole Loves playing with things around the house. Well now I know what happened to my laundry basket. :)

ok now

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I know, I know... it has been a few days, but with all the emotional issues that I have been dealing with I was taking the pictures but each time my mind started to think I lost it so I am going to get all caught up today! :)

I know not something creative or anything like that but it was dentist day for 2 boys and Rhett was showing Dylan that it was not scary to be in the chair with people prodding in your mouth.

Emotional

Well this week is over and I am so grateful for that. It has been very emotional for me, trying to put on a no worries face everyday for the kids when I am having a hard time.

I would like to help more people. I feel like when I help people my pain isn't as bad.

There are times when I wonder how my kids are handling everything that they have to handle. I was so happy that the first week of school went so well. I would for the kids to have an outlet to be able to let everything out that is bothering them.

I need to post some more pictures but I need to get them off my phone first. :) LOL!

Rhett was show and tell in his class this last week on Wednesday. I went to his class and told them all about Rhett and explained to them why he is the way that he is. He has always enjoyed me doing that. It was great to be able to explain in more detail that I used to. I figured that they are all smart enough to understand and I was right they did understand and after they asked great questions. I was happy that they were so involved and wanted to know as much info that I was able to give them. He loves showing his shark bites to the classes that he has been in. I have also noticed that there is less teasing when I explain to the class what he has and what he goes through. It also helps him since there are more kids that know, when there is someone that says something that would hurt him all the kids that know him sticks up for him. Last year every kid in the school knew who Rhett was. That was great walking with him down that hall and even kindergartners and preschoolers would say hi Rhett and hi Rhett's mom. :) That would always make me smile.

Do I or do I not??

Oh my, oh my, oh my...

Why do we have to deal with this? I have been trying really hard to maintain my composure.

Having to handle all this, I just want to break down. WHY???? Why is this happening to him why do I have to sit here and watch my son slowly die? I know that there are lots of parents that have to deal with things like this. To bad that there is no other kids like mine.

So here is the news that we received. When we started the lung volume of Rhett's lungs were very small. The right lung had around 125cc and the left lung around 100cc in the left lung. This was when he was 4 years old. Those lung volumes were around the correct sizes for a 1 year old maybe. So now that we have had some PFTs (pulmonary function tests)since last year. We have had a PFT in October, January and now July. Guess what they are all the same. Hummm... Does that tell you anything? It tells me a lot! It tells me that these surgeries that the doctors have been doing since he was 4 have stopped helping him. Now we have gotten x-rays and CT scans trying to prove to the doctors that I know my son better than they think.

So anyways this last CT scan done in February showed his lung volume at the right side is at 412cc and the left side is at 325cc. Ok then he had a super aggressive surgery done in April trying to get lung volume. What the heck! Doesn't the doctor know you cannot get that much lung volume to make up 3 years in one surgery? :/ So we waited to get another CT after April just to prove to the doctors that I know what I am talking about. As we wait we have a lot of different appointments trying to get a lot of info before we meet with the doctor to discuss the CT scan results. This way we have loaded guns before we walk in and they ask for more tests.

So we get there after worrying for weeks to months. Well at least I was worrying since I knew what was going on and I understood the things that I needed to understand. We get there and to post pone the wait that I have been waiting for they send us down to x-ray since their x-ray machine was dead and they were waiting for someone to come and fix it. After that we went up stairs and wait some more. My nerves were on end! What was talking so long??? We were the first to be seen by him today so why all the waiting? Finally we are meeting the doctor and this is the news that he gave us.

The CT results from August are at right lung 504cc and the left lung 389cc. Oh great we only went up that much that SUCKS! No wonder he is having a hard time breathing. Duh! I could have told you that before all this. Hummm... Do the surgery this next month or not that is the big question that they want us to decide on. He is now 11 years old and he has that small of chest and lung volume is not a good thing. You see if a normal healthy young adult has the lung volume of about 6000 you can see that my 11 year old is WAY BEHIND. I have been trying to reach the doctors office to see where exactly his lung volume falls in the graph.

It is really sad when Rhett turns to me and the doctor and asks both of us "What is going to happen to me?" That just breaks my heart. :( I told him that it is unknown thing at this time. since it really is.

He has to go in for a cardio cath to find out what the pressures are in his lungs. If they are high that is a bad thing if they are low that is a good thing. He will be doing that this next month. They will go in through an artery and up to the heart and check the pressures through that. after that the doctor wants to get together with the cardiologist, pulmonologist, orthopedic and primary care doctors all in one room and get a care plan down for him.

I knew all this was coming but I was not wanting it to come. I have explained to people that have asked... It is like breathing into a plastic bag, how long can you do that before your body just gives up? It is really sad to sit here and know that the doctors have done everything for him but nothing is helping.

I don't know what it is like to lose a child but I know people that are my friends that have. It is hard watching them go through that from the outside. I have met several families that have lost a child to many different diseases sadly for me there have been nothing like Rhett and Dylan. It is hard not to be able to relate to others. Even though there are many people out there that have great support groups for the diseases that they have in their families.

I can admit it I am jealous! It would be nice to know that we are not out here alone. Man it sucks feeling like you are all alone. I am grateful for my friends and family for their support. I am grateful for my Lord for the comfort that he gives me.

I know it took me all afternoon to get this up but I had to stop several times to try to process everything. I am feeling better. I just need to stay in my happy place since I don't have time to be sad and scared. I guess I will deal with that later.

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Ok so Nikole wanted me to have everyone promise that they won't laugh. I did her hair this morning in 3 little braids and then one bigger one at the back. Her hair went all frizzy when we took it out before bed.

It is a good thing she will be showering in the morning to make sure that her hair isn't frizzy tomorrow too. :)

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This was a picture that I wanted to get with him and Dylan together, but Dylan was having issues and was not happy.
This was the only picture I got of the monkey.

Getting on the elevator at the U of U.

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So each time I go hummm... Dylan puts his finger on his chin.
It is very funny and has done this since he was younger than 1 since I would walk around thinking of dinner holding him and go hummm... I would tap my chin so now he does that and it is almost every single time he hears me do that. :)

He is too cute! And his eyes looking great! :)

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I promise that I have been keeping up with mt photos but I have a really hard time getting them off my phone now since the cable isn't working. So I am going to catch up tonight. :)

This is my nephew who passed out at 3pm since he didn't have a nap. As soon as we took him out and layed him down he woke right up screaming. :)

He is a cutie!

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Wow I think this is the last one before I am caught up. :) That is great news for me since I am getting tired and I have to be at the doctor office by 8 am. That means I will have to be getting up at 6ish am to make sure the kids get up and ready to leave the house so they can make it to school and that me and the other 2 kids can make it to the doctors on time.



The normal first day of school walk to school. Too bad that daddy was not able to make it this year. :( He had to work early and so it was me and the kids. Well we did a great job and we got the the school on time! Yeah for us and we will do it every day all year. :)

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Man playing catch up really sucks when you are day and days behind. I wanted to post this since Dylan was in the hospital.

This is his hospital buddy. He had made one before this one but the doctors in the OR lost it. We were really sad for him since he was cuddling it. So we had him make another one.
Thank you PCMC for letting him color 2 dolls and enjoy them. :) Too bad he had one lost.