Yesterday was definetly an odd day. Started off very sleep deprived as usual, poor Avery. I slept in the bed with him b/c he was up screaming hrly. He falls asleep and is awoken by a full body spasm (arms and legs straight out and screaming) I gave him meds. but didn't seem to help. So either he is struggling respiratory wise or in pain.

Then this odd man in a truck pulled up to where all my trash was as it was trash day. I thought he was hungry or something but nothing in there except tons of pooping diapers. He took a trash bag. Dingy me thinks nothing of it until my nurse mentioned identity fraud, so now I am freaking out. Off course it would be us that would have our identity stolen.

Tag we are it!!! According to my friend Robin. Remember the little girl vomitting at Nessa's party. Well poor Isaiah is the "it". He was retching all day yesterday with very nasty poop. I can only assume he has the bug. Luckily he does well with being ill.

Avery spent the day being very junky and needing tons of suctioning throughout the day which is not his favorite thing.

I had a blasting headache and was seeing spots. Apparently I did not look good at one point b/c a girl at the grocery store asked me if I was okay. Musta look like I was going to pass out or something.

Worked out some stuff between my nursing. You know how us women can be. I think most of our problems would be solved if when an issue came up, we just deal with it right then and there. Hopefully we have some harmony now b/c it is a must for this household to survive.

Also had a guy come to fix my furnace b/c one of the zones was not working. You know that cost an arm and a leg.

Let's hope today is a less interesting day.

For bedtime we drugged up the boys, to bed and I was in bed by 8pm. What do ya know......They slept ALL night for the first time in weeks.

Things are actually pretty quiet right now. Meaning, no hospitals or major disasters. Avery is his typical junky self and still waking up tons at night or desatting (dropping his oxygen levels which is not good) but at this point I am so used to it. My regular nurse has been here now during the night and apparently I wake up every coupleof hrs. saying " Is that you". So it will obviously take me some time to get used to night nursing. While she has stayed, she has had to adjust is bipap mask every 15-20 mins (No wonder why I don't sleep)....

Rick and I have been having alot of talks lately. You know the ones that you really don't want to have but need to have. We have been really thinking about if Avery does die, is it better or worse for us and Janessa if it happened at home or in the hospital. Again, not something that you want to discuss but have to. Her social worker came today which is so good for her. I asked what her experience was with this and she said that siblings tend to do better if the other sibling dies at home and they are part of the process. Something about that is just not right to me. I mean if I had a choice, I really think it would be in the hospital and have Ness come and say goodbye while he was on a vent. But who really knows what the right thing is. This is when my faith kicks in aand praying that God knows how he wants it to go down.

We also discuss cremation vs. burial. Again, all really icky things but a fact of life. We are all going to die at some point. Never could imagine that I would have to have these discussions but we have too.

I am really trying to enjoy all of his good days b/c we have been getting alot of that lately and cherish all of it. But I also have to be realistic at the same time. KWIM (know what I mean). Every day is a gift for sure.

Nessa's Party

Happy 8th birthday Janessa

I just cannot believe my baby girl is 8 yrs already. Time surely flies by. We are so very incredibly blessed to be her parents. She is truely something else. I am amazed with how bright, funny, and outspoken and I could go on and on about her. Did I mention the attitude though. We are in so much trouble. But in all honesty, she is a good kid and going to be such a caring and understanding adult b/c of her life. We love you so much.

You can call me crazy. I had NINE kids sleeping over last night. Ahhhhhh........
They settled down by 11 pm which was not bad and were up at 6 am which was good. Until...........

One of her friends got sick and vomitted chocolate all over my light colored rug. Ahhhhhhhh. Finally got it cleaned up and kids all back to their respective owners. I am driving the little girl home in RICK"s Jeep, when............................
She vomits all over his Jeep. Yup, so glad it was not my car. LOL

Janessa then got her gifts from the family. Overall it was a good crazy weekend. Enough with the sleepovers. I am too tired for all that.

Avery had quite a few blue spells this weekend but he certainly cooperated for his pictures. Please make sure you view them at the top. Enjoy.

The lack of sleep all week has really hit me today. I feel like I have been sleepwalking all day. I got a call from the agency saying that have a nurse or 2 for me from Wed, Thurs and Fri. night. One is a female who can't start for a couple of weeks and another is a male that will be ready sooner. Hmmm, such a dilemna. I would actually prefer the male b/c I think it would be good for Avery and for the other nurses. I just feel weird with Janessa at night, KWIM? We will see.

I am so glad that I will have a nurse for Janessa's sleepover tomorrow night b/c there is NO way that I could do w/out. Tomorrow is going to be crazy although as we are doing family photos in the morning and then the party later in the day. Then Janessa's real b-day is on Sunday so we will do our gifts then. Her birthday is usually a 3 day event. LOL


Currently Avery is pretty wired and not napping at all during the day b/c if the prednisone which is thankfully done tomorrow. We saw no positive change for him with it only lack of sleep which is not what we need. He is still desatting tons at night, I think the o2 is much better for him right now but we are still using the bipap to start with at night then I end up switching to o2 by 2am.

Wish us luck on our pictures tomorrow. I will try to post the finished product.

Hope you guys enjoyed the pictures, I think Avery is starting to figure out what the camera is (we all know Isaiah knows what it is). Although the nights have not been great b/c of all his desats, he has been happy during the day. I am really finding the straight o2 works better for him than bipap. He seems to have worse desats on the bipap. It is supposed to be better for him in that it expands his lungs as he is not able to do it himself but I think he is working against it. He doesn't love the o2 but has really no choice in the matter. I am hoping for a quiet night without any alarms going off.

Although we are approved for night nursing, we still have to find them which is the problem. Luckily I have at least 2 filled for now.

My mother-in-law birthday is tomorrow so I got her a coach bag. I went to Marshalls and they had the large cute Coach and it had a small mark on it so I asked the cashier if she could take anything off it and she said only 15 dollars so I tell the next cashier who was ringing me up and he thought I said 15%, so I went with it, Well by the time he got bag with the new tag apparently the next person thought he said 50% off. Yup, I got a new Coach bag for 50% off. So we give it as a gift tonight and Janessa was with me for the purchase and just had to tell grammy of our deal. ROTFLMAO........

So this coming weekend is Janessa's sleepover. I think I may definetly have to rent the hotel for that night, LOL. I cannot believe she is going to be 8 already. She is just so grown. I got her a look-alike American girl doll. She will be so happy.

Isaiah has had a great couple of days, he is still battling alot more retching spells but they seem short lived. No idea where they are coming from but they are manageable.

As you can imagine I have been on such an emotional rollercoaster. Some days I just want to cry and others I have no idea how to feel. The one thing I do know is that no matter what happens, Rick and I will get through this together.