A learning expirience

Today was quite the day. It has been quite the lazy day today. I got up this morning by six forty five to help Kaylee. She was crying so hard this morning. So I waited to see if she was going to stop on her own or what. After about ten mins. I decided to go in and check on her. I don't mind doing mornings for her because I have to wake up anyway for Jw and school. So I usually always go in on her in the mornings and give her her binky and also her Chloe doll. She then usually snuggles up with that and goes back to sleep until the nurse comes at eight o'clock. But this morning she was all slept out and she wanted to get out of the bed, no matter what anyone said. Luckily her feeding machine started beeping and I could turn it off and flush her G-line and be able to take her out. I took her into my bed with me and we watched tv till Jw woke and she finally fell back to sleep, till the nurse came.
After Jw went to school, I hung out and chated with the nurse until around ten thirty or so and I decided I needed a couple hour nap. Ha! I ended up sleeping till Jw got home from school at three fifteen. Then I hung out watching Tv until around six and then Jw volunteered to make supper. So of course when he volunteers we let him do it. It's such a great way for him to learn new things and prepare himself for the future. We agreed that he would make pasta and sauce tonight. After he was finished I went in and helped him drain the water and he put the sauce in and Melissa, Jw and I went to the table and ate.
While we were eating Melissa started talking to me. All the while Kaylee was crying and crying and crying again. Knowing that there was really nothing that she was crying about, she had a clean diaper, just ate and burped. She just wanted to express her feelings and boy did she. Anyway, Melissa was telling me about last night and how she was feeling betrayed and why all the good people only get children like this. At first I was taken aback and was like, well think about it this way... Would you want a "horrible mean" person or "bad" person to raise a child like this? And she thought and was like, no Iguess alot more children would be in the system then there is now. And boy do we know from expirience there are a heck of alot, including special needs children. I told her that she has to look at this as a blessing. That God chose her to care for this special "perfect" child. At first she couldn't comprehend the idea of perfect. Until I told her on what I was taught and fully believe how we are sent on the Earth to gain a body and to expirience and learn the things we need before we can go back and live with HIM. She actually started thinking of it and was like... hmm this is a learning expirience for me? Is this teaching me b/c I don't have patience that I need to learn it. I'm like very well could be.
I then told her that possibly that God made Kaylee a special spirit that didn't need to learn anything in life and that all she needed was be able to come to Earth and get her body and when he is ready she may go back and live with him with the fullfillment that was required of her. But you have to live on the positive side of life and be thankful that you were chosen. I also told her to keep a positive attitude in life and you may find more miracles then you would ever think of. This is how people beat Cancer. How mothers that were told they could never have children , etc. etc etc. They kept positive in every negative situation and they were blessed in one way to another. It's the way of life. It's the way we were suppose to live. I kept telling her that if we live in the negative, that only negative things will happen in her life. But if we live in the positive that all positive things will happen in life. And some of our set backs can have a positive twist on them if we let it.
Lastly, I told her that look at it this way. WE were told that kaylee was more then likely going to be blind, deaf and not be able to use her voice. Well, guess what, she can see and hear and she uses her sounds pretty well. So who's to say that she was told she couldn't ever sit or walk. Positivity will be the blessing in our lives.....
SO yes, I was able to bear a testimony to my daughter like I never thought I would ever be able to. To try and fill her heart with the knowledge that I was given in my life of my Heavenly Father and the things that He is capable of... That was a blessing in and of itself. B/c I thought I would never be able to do that. Anything religious is very touchy in our house. Even with Michael. If it's not Jw and talking about things. It's just me and my Father in Heaven or my friends from church. What a blessing it is in my life to have this knowledge and be able to share it......

Kaylee came home... Bad News....

These are pictures of Kaylee in the hospital. She had two different tests done. The one with the cap on is from the EEG and the one wrapped in the blankets is from the CAT Scan.. Poor booger...

The sad story of this is that the results from the testing proves that she has severe brain damage. There was changes from these tests compared to the tests that she had back in OCT. when all this started. Her brain is shrinking. It is too small for her age. That is the severity of the damage that was done from the seizures that she had. Good news is that she doesn't have seizures any longer. They also told Melissa that she will more then likely never be able to walk nor sit up on her own. Her hands are in a fist all the time. This will not change b/c it is due to the damaged part of the brain as well as the Physical Therapy will not loosen her arms up either. They are going to start giving her a certain shot to do it medicinally. In one way it's the saddest thing you could ever imagine. But as I sat tonight and rocked her in my rocking chair, I looked into her beautiful eyes and started to cry and it came to me: " You are a perfect daughter of our Heavenly Father. You are so perfect that you did not need to come to earth and learn and grow. You just needed to come to Earth to be able to gain a body and be able to return to our Heavenly Father when the time is right. How special are we that we are blessed to have you in our lives and to be able to love you and take care of you." But then the sad part of the brain came back and thought wow how horrible for this to happen to her and to Melissa. I feel so badly.

They are thinking also that possibly the crying that she does all the time is due to acid reflux and some of it is part of the brain damage also. They did order Zantac for the reflux. So that will help..

Anyway I'm going to pull up the photos that I took of her when she first came home. I finally got her with her binky out of her mouth. So that's the other two that are up there in her pink stripped pj's. I caught her in mid sentence (as they say) she was just getting ready to speak. Granted she doesn't say words, she just makes noises. But to her it's like holding a conversation.

You should have seen Kyla. I stood her up next to her in the chair, holding her up so she could see her sister that she missed so much. She kept grabbing her hand and jattering away.. She touched her hand, arm, and then touched her cheek. It was sooo sweet. I would of grabbed a picture of that too. But, I can't hold on to her and hold the phone at the same time... BUt it was priceless. You so can tell that Kyla Bugg loves her sissy so very much.

Well, it's now almost eleven thirty and I finally have the opportunity to sleep through the night. Finally! I haven't done that in almost a week. In the last three to four days (its been so long that I forgot) I have only had like four to five hours sleep. I think the Vemma has alot to do with my energy to keep me going through. All those little cat naps.. B/c Kyla only cat naps through out the day.. Imagine that... So I'm going to get off here and attempt to get to sleep. I have a busy day tomorrow. I have that Eurologist appt. at 11. And I have to make sure Jw is up and out the door for his bus by seven forty five.

Hope you have a great day... Enjoy!!!!

kaylee in the hospital

Like I said in yesterday's post Kaylee is back in the hospital. They decided to keep her overnight last night and do more testing today to see what is wrong with her. She just kept crying and crying. All her labs came out normal and her Xray of her belly and her EEG were all good. They did find alot of Gasy air in her belly but they are not sure if it was due to the problem or due to all the crying and screaming that she did. So that is a wait and see. So far today no more gas. They are going to keep her in tonight again and tomorrow morning they are going to do a CAT scan on her to rule out if she has any bleeding on the brain. If all is boiled down and ruled out, it may just very well be a with drawl from the Phenobarbital that she takes.. She has gained so much weight (16 lbs.now) that her intake of the med. is not enough and it's such a strong drug that you have with drawls from it... Scary huh... Poor thing...

The Picture on the left is one of her talking to her mommy like four days before hand. She had been in such a good mood.Then her mood changed just like that. If her appearance have anything to do with it, she will be fine. Doesn't she look well rested. Tee hee, Melissa said that all she has done today is sleep in between all the testing. She was making up for lost time. But hopefully she will come home soon. WE sure do miss her.

Even kyla is missing her sister. She wasn't in the best of moods this morning. She woke around six thirty and wouldn't go back to sleep until like nine thirty. Then she only slept for about fifteen mins. Stayed awake up through till like one thirty, finally fell asleep till two thirty. I must of fell asleep so heavy in that time, that I missed two phone calls and I never miss them when I sleep. I know I was tired. I was back to that point of awake all night long again. It seems like I sleep for awhile, then I'm awake four the next twenty to thirty hours. GO figure. Hopefully tonight, I'll sleep better due to the fact I only got an hour and half sleep total.

My cold has hit the chest now.. I hack so badly that Jw actually told me that I sounded "like grandma" when she coughed. Boy that can't be a good sign. That poor woman had Bronchitis all the time. I guess it's time to go and see the Dr. to make sure it's not that... So much fun. I have an Eurology appt. On Thursday to see why I still have blood in my urine. all the testing so far hasn't linked anything. SO now the Dr wants me to get a scope done to rule anything out that needs be. Geez! Does this mean I'm getting old fast??? We'll have to see what he says...

Jw has been placed on new meds. Hopefully that will help him in school and focus and stay organized better. It's a brand new med called Vyvanse. It's actually a break off of Adderall XR.. His dr told me that b/c he was on such a high dose of Concerta, that she had to do something different. Has anyone ever heard of this?

So let's try this one. Poor kid, he was on a high school kids dose.. And it wasn't working.... So we pray this will work. We have to fight the insurance company to cover it b/c it's new. But we've played these games before with him. So it shouldn't be that hard. But he even seems to like it.. It's suppose to take ten days to get into the system. He came home bragging on how he felt.. I'm like ok if it helps we are happy.. Especially the teachers.. In about a week I'll find out from them how all is going. I'll inform everyone then.

Hopefully all is well where you are at.

baby sitting, errands today

I'm babysitting baby Kyla right now. Melissa had to bring Kaylee to the emergancy room. They are not sure what is wrong with her. She has been crying non-stop for almost three days. Now she cries off and on through out everyday. But today was different. Even with the nurse here she just wouldn't stop. It wasn't the "I want to be held 24/7", today it was something is wrong and no one is helping it. Then she started screaming and after so long of non-stop screaming. It was time to do something.. So the nurse and Melissa went to Hasbro and see what the problem is. So far they are not sure what it is.. They are going to do blood work and take x-rays and see, and if nothing comes up with that, then they will keep her over night for observation. Because the poor little thing won't even eat. And when she doesn't eat, it lowers her blood sugar and strikes the Glycogen disease levels in her liver and it can get bad enough that the seizures will start back up and it could kill her. So they have to take all the precautions they can to keep her from that.
Anyway, so I have Kyla and I got to feed her for the first time. Normally that is a mommy job.. LOL Now I see why. I should of taken pictures of that too. It was laughs. She eats half and spits the other half, just for fun! She had it all over her mouth, chin, nose, bib, everywhere. It was soo funny. she had to be washed from the neck up to clean her up when she was finished. Then I took her in and got her ready for bed and laid her on my bed. We get to have slumber parties when Mommy isn't at home LOL.. Kyla gets to sleep with Grammy tonight! And as you can see, Kyla gets ready to fall asleep by pulling up her blankey to her face, I looked at her, she smiles and then pulls it up the rest of the way and fades off to sleep. BUT, if you don't give her the blankey and allow her to do this, she will scream until you do. So what can you do but allow it. After she gets totally out, I sneak up and move it away from her nose and mouth, so I feel comfortable enough to leave her that way... Unlike Mommy, I'm a nervous Nelly when it comes to that.....
Anyway, I did manage to Make Myself get out today and do some errands and pay some bills. So I made about four stops today around town and got everything done that I needed to do. Now I feel better until next month. Not bad huh... It actually feels good to be able to pay bills.. There had been such a long time that we had the church paying our bills for us. WE are so thankful to the church for that. But it still feels great to be able to do it yourself. The even better part will be when Mike gets his parent's inheritance and we can pay off all of our past debts and be completely debt free. Not just our present bills. That will be like having the world lifted off our shoulders. It's sad to have his parent's pass away to be able to do this. We miss them terribly. I would definantly trade debt for them anyday...
But the good news will be once that our debt is cleared and everything is back to where they were before poor Mike got so ill and hospitalized, we will be able to buy our neat little home. And for the price that Mike's sister is selling it to him for. We can be able to put an addition on it and put another master bedroom upstairs with a bath. We are also hopeing to extend the width of the kitchen out a bit and add on a full dining room to boot. But if we only get the bed and bath upstairs, I won't complain.. I'm just grateful that we will be able to do it. We have moved so much in the past six years, that I'm ready to settle down and have a place we can call OURS....
Well, the weather is still really really cold. The virus has finally left the house. But now I'm strickened with heavy chest congestion and cough constantly. Sometimes I cough so much that I feel like i'm coughing up my whole chest cavity. It's insane! But between the Niqual at night and the musinex during the day time. I'm sure it could be alot worse.... BUt I sure can't wait till Spring is here and I can get out side and enjoy the scenary of the beach, that is just down the street and hopefully conquer the fibro. problems and sleep correctly so I can get myself back to church and enjoy the sisters again. That's the hardest downfall with fibro and winters with me. I miss soooo much......
Oh well, I hope with your winters that life is a bit easier for you all. I'll tell ya, I don't wish this on anyone......

Here is a picture of Jw with Kyla.. Don't they look so adorable?

Snow Snow and more Snow....

Well we are due for more snow... Oh JOY! You know living in RI we are not the type to looking forward to all this snow.. We are suppose to get it once or twice and then have it done with for the year... LOL Not this year... I meant to get pics of the snow the last storm we had but by the time I got up and went, it was already shoveled and all in piles from Jw playing in it during the day... I guess that is what the day of fun and no school is all about..

But anyway, Tomorrow is another day and I have to be up and dressed pretty early. I have to take Jw to the dr's tomorrow. We have been ill in this house now for two and half weeks. There has been such a virus floating around that off and on we all have been sick... But talking to a receptionist at the Eurologist office (where I need to go) she said that her house has had it going around for two and half months... I'm like OH JOY!

The only good news, is that Melissa and the babies haven't caught it.. How is that amazing? I'll never know..

Anway, there really hasn't been anything going on around here for me. I've spent more time in the bed lately then out of the bed. Being with the virus and just the night before last, I had one of my really bad migranes. I haven't had one of those is eons. It was so bad I was sick with it. So the day before I slept the day away making up for lack of sleep. Then of course I wasn't tired the entire night and day yesterday. But I started getting tired around two Pm and I had to pick Jw up from school. So I was determined to stay awake until at least Jw went to bed. LOL not likely. I passed out somewhere around seven thirty.. Funny though, you would think with going to bed so early that I would have woke up this morning and been ready to face my day.. NOPE! After Mike took Jw to school, I rolled over and slept till twelve forty five.... That's seventeen or so hours... How bad is that. I woke hacking my brains out with congestion in my chest... SO much fun... I just hope that it doesn't take two and half months to get what ever it is in my house out. So that we are not sick any longer......

Oh here is a picture of my granddaughter Kyla helping grammy type to my Sister in Law Valerie.. That is her most favorite Auntie.... LOL