What a GREAT Weekend

Well this weekend was SO much fun. It all started on Thursday with Demi's school carnival. It was alot of fun and Demi was so happy to show us all her friends. So many people came up to Demi and told her how wonderful she was at the talent show and she was smiling from ear to ear. I was so proud of her at the talent show. Considering that she woke up sick, dizzy and vomiting it was a great feat to get up and sing in front of the whole school and I don't mean sing a little I mean she belted it out like she was a pro.

Then on Friday we went to the zoo in the evening. Mike, Nicholette, Demi, Reese and I went and it was so nice. A group for people with children who have disabilities had invited us to see the zoo and to have dinner. It was really a fun evening and we were all so happy that Mike came.

On Saturday we went to see Pirates of the Carrabeian with HopeKids and that was so much fun. Reese loves going to the movies and I think the family loves going too. What is better than going to the movie for free and getting free popcorn and a drink. Now that doesn't happen very often does it?

Then Sunday we all spent working in the yard. We worked on weeding and planting flowers. We cut the grass and worked on getting the fence done so that the dogs can run free which will be so much nicer than being chained up.

The weather has been so nice and that helps the body feel like getting things done. Now to work on the inside of my house. There is always laundry and house work to do. I really want to get the house looking nice before Tommy and Gladys get here on Sunday. I know they don't care what the house looks like but I do so off to work.

Sunny Day YEAH!

A sunny day today I am so happy. Not like it is 80 degrees or anything but at least it is sunny and that does great things for the attitude you know.

We are going to the zoo tonight with Reese, Demi, Nicholette, Mike and me. We were invited by a group for moms with kids with disabilities. Maybe since everyone there has a child with something there won't be all the rude stares. I mean I try not to let it bother me but sometimes I just want to punch people. Children are one thing but adults are a complete other thing. I always want to say "he is really cute isn't he" that makes some of them really imbarresed but others are clueless that what they are doing is rude. Oh well life goes on right.

We went to Demi's school carnaval last night and it was alot of fun. Demi played the games over and over again because she loved getting the prizes and she wanted Reese to have some too. She is such a sweet big sister to him, I think she has learned from Nicholette and Amber because they are always so good to her.

Tomorrow we will go to the hopekids movie Piarates of the carribean and that should be alot of fun. This will be the first hopekids event Mike has gone to so that will be alot of fun for the kids, they love when he comes along. Hopekids is such a great group, they have given us so many oppurtunities to do so many fun things with Reese and Demi.

Well just so everyone knows I heard from Angela (Reese's birth mom) again today. She informed me that she no longer has her daughter. Says that the state took her and she has been adopted. She says, "I kept trying to call you when we going though the court thing". What the heck am I the drop off point for all the children she has that she can't take care of? I am almost 48 years old and don't think I can do the baby thing again so I hope she doesn't expect me to take the baby she is pregnant with not. You all know if I was asked I wouldn't be able to refuse through right. I am crazy but I've always known that.

Well I better sign off and go get some housework done. Tommy and Gladys will be here in about a week and boy I have many things to get done before they get here. I am so excited that someone from my family is coming to visit that I can hardly tell you. So until next time.

Are You Kidding Me???????

Well those were the only words I could think of after receiving an email this morning "are you kidding me".

Let me explain, I got an email from Reese's birth mom this morning. In the email she informed me that she is 20 weeks pregnant with a boy. Because of the genetic disorder that she carries and because she had been told point blank not to have anymore children I just couldn't even believe what I was reading. I of course contacted Reese's genetic doctor to let him know what was going on because he had been very involved with her last pregnancy which happen to be a girl. I just don't know how she expects to be able to care for a child with the problems that this little guy will have, if he even survives birth. I know that is why more than any of you wanted to hear but you know sometimes you just have to put your thoughts to paper to really get a grip on what is happening.

Life does send us some curve balls sometimes but I guess that's a way of finding out what you're really made of. Sometimes I think I can't take anymore and then I make it through so I know I can do this too I just find myself concerned and thinking about this unborn child.

Well I will keep everyone posted and please all pray for this little guy that the Lord will do as he sees fit and pray that I will be in tune with what I am suppose to do because right now I have no clue

Love to all

Carla

Life is good

Well I can't believe that I haven't written in this blog since February. I think sometimes we just get so busy and we forget that there are people out there that are actually interested in what is going on in Reese's life.

Things here are going so well. No hospital stays since the one in Jan. (I think that is the month we were there) and we has been feeling really well and gaining tons of weight which is a good thing. He is also growing so much taller. I have to remind myself that his birth mom was 5'10" and so he is probably going to be the tallest one in our house. You see we don't grow em that tall around here normally :)

We are all getting excited for Aunt Gladys and Uncle Tommy to come for a visit. This is some of our family from Chicago and we always get so excited to show family our little part of the world. We are also anxious for our Wish Trip to Disney World. We feel so lucky to be granted such a wonderful gift. Every time we talk about it to Reese he gets a huge smile on his face and that makes us all smile. We received our flight plans and we got a non stop flight and we are so happy about that. Everyone is going to be able to go on this trip (Mom, Dad, Nicholette, Amber, LeGrand and even Logan (Nicholette's boyfriend) and of course Reese). We are staying at a place called Give Kids the World and I have heard nothing but wonderful things about it. It just all seems unreal because normally we would have to save for a year or two to take a trip like this but here we are no worries and everything is paid for.

Nicholette is home for the summer so that makes everyone happy, especially Logan:) She is a great help around the house and with Reese so it is really nice for me. She has all her housing arrangements for next year taken care of that is a great relief to her and for me because she is going to be rooming with Sloan and she is a great girl and I think she is going to be a great room mate.

Anyway that is probably more than you all wanted to read but that's an update on our lives and I will try harder to write more often but no promises.

Until next time...............

WHO KNEW?????

Who knew a haircut could be so traumatic? Reese has never really loved haircuts but he does love Carmen who cuts his hair. Most times he hasn't been happy but he tolerated it. Last night was a different story, oh my. Carmen came to cut his hair and he took one look at her and started to cry. Wow does he know how to make a person feel bad or what. He continued to cry the whole time and even through his bath after. I think he was mad at everyone for some time but like always he finally forgave.

Reese's vest theropy is going really well. He has two 30 min treatments a day and he smiles the whole time. We are really hoping this will keep his lungs clear and keep him out of the hospital. Only problem is the vest is on a 30 loan and then we will see if our insurance is willing to pay for it. When I asked how much it cost the guy smiled and said, "about $15000" I was like ok well it will be interesting to see what our insurance says this time. Our insurance has been great but two $15000 purchases in a row might be a little much to ask. I guess we'll just keep our fingers crossed.

On the 6th of March we are headed to St George so Reese can see Dr. Andersen and get another Atlas adjustment. For those of you who don't know this is one of the best things we have ever discovered for Reese. Amber and Nicholette are going with this time and Amber is also going to have an adjustment and hope that she can get some relief from the back pain she has been having for some time now. As for Nick we are going to take her to the airport in Vegas on Tues or Wed so she can fly to Dallas and drive back to Salt Lake with Logan. Logan got a job in Salt Lake and so he is moving back and I don't think anyone is happier than Nick. Now we all have to wait and see where there relationship goes from here.

JUST A FEW MORE THINGS TO DEAL WITH

Well I haven't posted anything in some time so I will try to catch everyone up on the happenings in our life.

Reese has been doing pretty well other than a nasty diaper rash. Mind you he does not get diaper rashes so we have tried everything with no luck. So last Tuesday I called our doctors office to see if she could see him. After being on hold twice for over 25 minutes I had no choice but to go to the ER. I hate going there because he always gets admitted. I thought this time would be different because surely they wouldn't admit us for a diaper rash RIGHT. WRONG because by the time we got to the hospital the rash was under both arms and on one leg. What the heck was going on. They started IV's and drew labs and then decided that it might be a strep rash and he would be admitted. I was so frustrated with the whole thing. The entire hospital seemed busier than I had seen it in a long time so waiting was part of the game. We were in emer. room for several hours before we got a room. When we finally went to our room it was time for meds and that became a joke. After finally getting his 8pm meds at 11pm he was so tired and so was I. We both fell asleep only to be woken by the RT about midnight. When I asked what see was doing she said she was going to do trach cares and change his trach tie. Are you kidding me! I stood up and said "No you're not doing that now." She informed me that if I refused she would have to chart that. I said, "I don't care what you chart just get out!" Needless to say we didn't see her again. I hate to be rude but sometimes the things that happen make no since. Really does anyone use common since? We were released the next morning and told that it was a yeast rash and we could treat it at home. Really if the doctors office would have answered their phone this would have been alot cheaper.

On Friday Reese started vest therapy and he loves it. He does it for 30 min twice a day and he is sounding clearer than he has in a long time. The RT who came to show us how to use the machine was so helpful and nice. We are excited to see how this goes. We are on a 30 trial before we decide to see if our insurance will pay for it. When I asked the RT how much they cost he said about $15,000. Man my insurance is going to be ready to kill me. Reese has two insurances and that has been very nice.

About 2 weeks ago Reese DynaVox arrived and we are so excited to use it. It will allow him to communicate. He can even email and text on it. My family is so excited. The person from DynaVox is suppose to come out this week and program it so we can begin to use it.

Well today is Valentine parties at the school. Even though Reese has not been able to go to school because I am using an agency that doesn't have a contract with our school district they have said he can come for the party today. I hope this whole school thing gets worked out because he missing being with the kids so much and they miss him too.

I will update everyone more often on our progress.

Doctor Visit AGAIN !

Well there always seems to be a doctor visit somewhere just around the corner for Reese. This week was a little unusual because we have had doctor visits 3 days in a row. We wouldn't want to be able to schedule them on the same day that would be way too easy:) It's been ok though because we have gotten alot of questions answered. Wed. was an appointment at Fit Well for a new custom compression vest and shorts, dafo's and a brace for Reese's left hand to help him hold things to write. Thursday was a check up with the trach doctor and we were able to ask him about the fountains of secretions we are getting these days which is a change. Come to find out the robinol we were giving him was less that half the dose it should have been. Changed the dose yesterday and it is a miracle no more secretions streaming from his trach. Today is an appointment with pulmanology to check on a vibrating vest that would loosen the junk he gets in his lower lungs. They are pretty expensive so the doctor thinks we should try it on a trail basis for a while so we will be seen and fitted for that today.

We found out at the beginning of the week that Reese's insurance had paid for his new DynaVox and so it was shipped out on Wed. We are so excited for Reese to have a way to communicate with the world and we feel so blessed that his insurance would pay for it.

By the way if you were all wondering we did not end up in the emergency room (my last post) we kept fighting at home and finally had a break through and he began to feel so much better. Thank you to my great home nurses who were willing to just keep on fighting with me so we wouldn't end up in the hospital.

Well I had better run to get gas and make it to our appointment on time.

Hospital Visit or NO Hospital Visit

Well sometimes I just don't know what to do. We have been fighting fevers, vomiting, diarrhea and now fountains of secretions out his trach. We gave tylenol and guess what? His fever went up now how does that work. I have been Reese's mom long enough to know that nothing is simple but I sure wish it was sometimes. I think we have tried everything we can at home and we are probably headed to the emergency room, you know our home away from home. I am just really hoping they can figure something out and send us home. I really an too busy to stay in the hospital but aren't we always to busy for that. Well I will update everyone on our little outing to Primary Childrens as soon as I know something. Wish us luck I have a feeling we are going to need it.

Much Better Day

Well Reese had a much better day yesterday. No vomiting and back to his bolis feeds. He is such a strong boy I don't think I could put up with the things he does every day. We are hopefully going to be going back to school this week. I had to change nursing agencies again which is a huge pain but I really wanted to get him back in school and using a certain agency was the only way to do that. Reese has been missing his teacher Ms Bree and Miss Monah so much and not to mention his girlfriend Camille. You know its going to be Valentines Day soon and he wouldn't want to miss the chance to give Camille something special:)

As for the rest of my family they are all doing well. Mike is working hard at his new position and I think he is really loving it. LeGrand continues to work and plan a trip to Disney World in June for him, Demi and Nick. What a nice brother he is to Demi. He loves her so much and really just wants her to be happy and get to experience things that she otherwise wouldn't unless he pays and plans. Amber is working hard and going to school this semester so she is very busy. She is also coaching girls basketball at church and the girls really like her and I think she really enjoys doing it. Nicholette is busy going to school at Utah State in Logan and really loving it. She is getting ready to apply to the college of Education and so she has been busy doing all of her testing in order to do that. She is totally in love with Logan and is anxious for him to move back to Utah. Demi and Reese are just busy being kids and enjoying every minute of it.As for me I love being a stay at home mom even though it seems I'm not at home much. I love having the choice so thanks Mike for working so hard.

Well that's about it for now so until next time.

Just Another Day At Reese's House

Well what a day yesterday was for Reese. The poor little guy could not stop vomiting. Finally sometime in the night his stomach settled down and he went to sleep and didn't vomit all night. I am really hoping this was the 24 hours flu and we are over the worst now. We are going to try slowly going back to formula from pedialyte so wish us luck. If we do it slowly we should be back to our normal feeding schedule by the end of the weekend. Other than this little illness things are going pretty well in our house. We have a couple of HopeKids events coming up in the next week and that should be alot of fun. We always have such a good time with HopeKids. It has given Reese a chance to enjoy so many things that he would normally not have been able to do so thank you hopekids.

Doctors Doctors and More Doctors

Tuesday we were up early and off to Primary Children's for an upper GI and to see Dr. Downy about changing to a G tube instead of his J tube. Upper GI went well and we were told that his stomach was working totally normal and we could have a G tube. Dr. Downy is so happy with how Reese is doing. He told us that he has gained so much weight that he would never have known it was him if I hadn't been there.(I guess that's a good thing) So we got a Gtube and a new feeding schedule so there is alot to get use to but that's pretty much the way our life is for us most of the time. Always seems we are trying to adjust to some sort of change. (our normal)

After Dr. Downy's office we went to Bryner Clinic to see his pediatrician because he had a lot of rattling and rubbing sounds in his lungs. We had a chest xray and saw the doctor. We were told he had an ear infection and a small pneumonia. They asked if I wanted to be admitted to the hospital or treat him a home. Seriously what kind of question is that? I want to treat him at home whenever possible so they said he would need a shot of rocephin in each leg for three days. I figured this was a much better option than staying in the hospital for who knows how long.

Meds and feedings were going well until about 2:30 this morning when he started to vomit. Mind you he isn't suppose to be able to vomit because he has a Nissan but I'm here to tell you he is vomiting and not a little either. We are trying to decide what to do. I would like to talk to the doctor but of course she isn't in today. I am going to try giving him some clear liquids to see if that helps. We are lucky to have a nurse here today that knows Reese almost as well as I do so maybe we can figure this out together. I really don't want to end up in the hospital on IV's.

I will update everyone on what happens.

Starting a Blog?????

I am so excited to have a place to share the accomplishments and challenges that our family faces everyday. Reese has been one of the best things that has ever happened to our family. I am excited to have a spot to share all of these things with family and friends. I hope that you will all find some of this interesting.