Looking up

Seems things are starting to look up. Hannah has gone two days with no pain medicine and is eating without a problem.
We found out today that we have a meeting on Friday with the school to see what they can do for Bubby (Jonathan) he may start of with an hour a day and work up to a four hour school day. I enjoy home schooling but really want him to have some other children to play with. His ABA tutor is amazing, she gives him so much attention and he really seems to like her. She is working on him getting so upset with us not being with him at times. That's not often. I am on the wait list for respict care so that may be a way to go as well. He is such a great kid I just want the best for him and our family.We have been doing everything and are fighting to get him everything he needs to be able to function on his on without all the anxiety.Some have asked me what all is going on with him, I had posted this on December 25th I believe. I am going to really try to get more information posted for him. I'm excited and worried about the meeting Friday because I am stressed out and would like some help but it's my job as a mother to do what's right for him so if he's with me forever that's OK. :}
We have a Ct this week until they can get all the doctor's together on the same page for his next MRI, should not take that long. But just want to take a quick peek at his tumor. I have faith that things will be OK. His EFMP looks crazy on paper work, we may never leave Colorado. I have been doing research so Savannah would be a great place to go back to then I'll be two hours for help. But that wont happen until after Tommy deploys after the the new year. I may go live near them until he gets back anyways. A year is long time to do all the schooling and appointments alone. I'm worried about it and it will take awhile to happen. I'm a bit burnt out on things but I know it will get better. It has too..........
The kids and I are going to Texas for a few days while my great (sister friend) is home on her R&R) we are looking for the break where we have no appoints, school or anything be enjoyment. Life knows when you can't handle things and you are given a break if only for a few days.

Hannah

Just wanted to tell everyone that Hannah had a wonderful day today! I think she is back to her old self. Still can't talk loud...not that we mind that, lol! Thanks for all the calls and prayers! Hope everyone is having a great weekend. Ready for football play offs tomorrow. Enjoy.

More updates :}

Sorry I have not been keeping up this week. It's been a long week. Hannah has had a really hard time with her surgery. She is in a lot of pain which we knew she would be but it really hard to see her like this because she is so happy go lucky girl and she is in a lot of pain. She scared us last night she started bleeding a lot from her throat so we went to the ER and they said it was normal but when we called her ENT this morning her said it was not normal!  We went in to see him and he said if it happens again he'll have to take her back in the OR and fix it. More intensive treatment but if it has to be done then we will just deal with it. She has slept a lot this week. Between her and Bubby I stay very busy!
Now on to Bubby, We found out today that his doctor needs a new consult the other one is no longer good.....nice huh! I was on it as much as I could be with appointments today. Tomorrow I will got to his doctor's and have him put it in. I laugh when people say the military has such great things...my child could need surgery but I have to wait until Tricare (military insurence) allows us too.
Bubby is loving ABA Therapy, I enjoy him going as well gives him some time to be away from me and everyone knows how attached at the hip he is with Tommy and me. He is so sweet and cute how can you not love it, but you need a break at times. Homeschooling and all the appointments we don't get much alone time. But we love being parents so it's all great!
I will try to keep better information updates sorry I said I would do better so I will try.

Pictures of Hannah from suugery and gifts :}

Hannah update

Hannah's surgery went well. She is in a lot of pain but we knew that would happen. Very normal. She was very stressed when we got to the hospital. A few tears and off she went. We were home by 11:30. She got sick a few times last night but seems to be doing better now with holding her juice down. Adenoids were only 50% blocked So they went ahead and took them because if not she would end up back getting them done. Jonathan was stressed about Hannah, made himself sick over it. But once she got home he was better. He loves his sister. She got Flowers and lots of fun socks from Mommy, daddy and Bubby. Aunt Boo Boo sent her an adopted Tiger from the zoo here. Very cute stuff they send out. When she feels better we will go see her. Grandpa and Grandma Spies sent a really cool purse. And Grandma Hobson sent her flowers. So she was excited. I will post pictures of her flowers later and Tiger.
Jonathan's big day is Tuesday, I'm asking lots of prayers that surgery is not needed. My sister's best friend sent us a prayer cloth and I am so blessed to have so many people who care so much about the kids. I know it will make him better! I know it. Hope everyone has a great weekend. |

1-12-11

Well I'm still awake once again past bedtime. I had an upper GI done this morning really bothered my stomach and Hannah is in my bed and she is all over the plae. She has surgery in the morning and I think she is very worried. We have to get up at 5....It's midnight now. Long day ahead of us! I'm glad she is early so we can get it done and over with. Less time to stress. Well for her! It's great having Tommy here with us, he has helped so much with appointments this month. Didn't realize how much I really run around everyday! Well I will update on Hannah after her surgery tomorrow. Hope everyone is doing well.

First week of year down...............

Well our first week of the new year is down and gone. Big things have already started taking place for us. I had my surgery on Monday, things went well. Had a little set back with the medicine but feeling so much better. School started back up Wednesday and it took just a few hours but I think we have headed to the right direction with that. It's always hard after having a nice long break to jump back in with both feet. Bubby started his ABA Therapy which we have been fighting for for a year so we are so glad to have that. He was a bit worried about going but after day one they had him sold on it. :} Just another way of getting him around other kids and away from me if only for a few hours a week. He gets to go 12 hours a week. That's kinda nice to starting offwith. I'm really hoping this second half of the school year goes smoother then the first. With all Bubby's appointments I think we have made the right decision on home schooling him, well both children. He does the four days a week of ABA, then he sees a really wonderful doctor just for his Aspergers. Dr. Thede. She is a blessing to us. Her son is 31 and has Aspergers as well so she understands so much that Bubby is going through. She also sees Hannah. We thought that it would be nice to have Hannah talk with someone because he does have a lot going on and she feels she gets the short end of the stick at times. I would have to agree with her. Tricare does not pay for it but worth having someone that knows from many points where Hannah is coming from.. And it helps that she can say what she wants and no one will know but her and the doctor. I feel good knowing she is able to express herself. All together Bubby has seven doctors and Hannah has two.
Hannah has her pre-op Monday and surgery on Thursday. We are very lucky daddy got to stay home and will be able to go with us.Once again I've been married to Tommy 18 of his 22 years in and he ahs never asked to be kept back for anything.  The past year I've been so stressed and I think the kids feel that as well. It just makes for a happy end of day when we have daddy with  us. At this point there is not one day except for the 11TH that we have no appointments that we need to go to. Most of them are here in the Springs but Denver isn't too bad of a drive. Very pretty views along the way.
 On the 18Th Bubby's doctors will make the call as to if he has suegery or not. So still asking for prayers. Please! So it's perfect having Tommmy home in case we need to do this. And I also feel more relaxed and sleep a bit easier. But then again it's 1:00 am and everyone is asleep but me. lol It's hard to think about anything but has the tumor grown, will they take it out, what will it intell. So I am really trying to take it day by day and just see what tomorrow brings. It's hard not to get snappy, upset and all the wonderful things your head does to you when all you want is an answer.I am finding that I'm more forgetful then normal but if I have to leave little sticky notes all over the house I will. I learned for a friend here, about keeping a notebook that has everything in it. I have copies of copies in there, his MRI cd's from before. You name it I have it. But when I go to his appointments it's better then having to say I'll get a copy to you. I keep copies of labs, medicine and just about anything under the sun that has to deal with him, Hannah and my self in it. It is kinda big but really think I'd be lost without it. I can see what dates I have appointments so there is no over booking.
I will let everyone know what time Hannah's surgery with be on the 13TH when we find out Monday! Bubby has a few appointments next week as well. They are doing ultra sounds on his kidneys and bladder to make sure the medicine he is on is not effecting them. We just want (like any parent would) for the tumor to stay the same and no surgery needed and all the side effect from the medicines to stop. In a perfect world everything would be grand, so lets hope for my perfect world to come back and we can wake up from this dream and have no more tumor, epilesy, genetic disorder, aspergers and anything else that has made it into our world to be gone. Hey, a girl can dream right? No more nightly shot's, medicine, trips to ER in the middle of the night. Don't get me wrong I love Bubby forwho he is, but I want him healthy and happy. he is a wonderful boy a mothercould not ask for me. I was blessed twice over whe I had them. Hannah is really helping and trys hard to understand I have to keep telling myself she is 11. But she'll tell you in under twomonths she's be 12....lol! Well we will update soon. Hope everyone has a great weekend. And Please cll us sometime, we would really love to hear from our family and friends. Good Night!