Halloween Pictures

Kids all had a great day. Isaiah and Janessa both had a parade a school and really enjoyed it. We took Isaia trick-or-treating with us, he had a good time. Janessa was her all of her neighborhood friends and was loving it. Hope everyone had a great Halloween.

Is everyone excited about Halloween? My kids are.... Well mainly Janessa. She is going to be Superwoman but boy did these costumes get short or what!!! She needs to wear a full bodysuit under the costume LOL. It is terrible. But she certainly is excited. Isaiah is going to be BATMAN and Avery is going to be a dinosour. Rick and I always fight over who will stay home with the boys. As they are in bed nightly at 6pm. But I am taking Isaiah out a bit earlier in our circle so he can experience Halloween. Avery will be in bed early as he just will not nap anymore and will be toast by then. First yr we have to buy candy as we have not lived in a neighborhood like this before. Rick will be busy passing out candy. Hope everyone has a great day.

Things have actually been pretty quiet around here. Weird.!!!! I am not used to quiet. But a really good thing. The boys are feeling really good. Yay!!!! Avery is eating, eating, eating.... He is so funny when he eats. So proud of himself and gets so excited when you put him in his highchair. This is such a huge thing for us. It is a normal baby thing that has taken him 18 months to get. But I will take any signs of normalcy at all. Now lets hope he starts packing on the pounds.

Well Miss Janessa got a GOLD STAR award at school. Which is for numerous acts of kindness. She is in a k-8 grade school and she said that she got the most stars so far this yr (70) not sure if it was that many but still I am so proud of her. We always worry about how she is adjusting with having 2 sick brothers. I know things are hard for her at times with all the hospitalizations and never being able to plan a thing b/c of the uncertainty of our life. But what I do know is that she is and will be this extremely caring and understanding and thoughtful child b/c of her brothers. She will be something really great, you just wait and see.

So Rick has taken on the challenge of painting the boys room. Let's just say the painting is not one of his best suits. He is aiming for Central colors, well 3 different gallons of blue paints later and spilling one on our floor, hmmm lets just say I am a little concerned. No offense baby but I am a bit worried about the room. You know I am a control freak. You surely are determined though. Hopefully this is the last gallon of blue paint. Looks like I will be posting many pictures of our finished projects and Avery getting fat. Hope all is well.

So back to the hospital for more bloodwork on Avery. I am suprised the poor baby has any blood left in him. We have been to the hospital once a week for the last 3 weeks since leaving the hospital (of daily bloodwork) for more bloodwork. And he is a hard stick. So no wonder why he does not like anybody at all. He thinks they are always going to hurt him. But the bloodwork is requested by the ketogenic dr., she is concerned b/c he has lost so much weight in such a short period of time and he is very fussy and b/c he still is bleeding in his belly. Although he has been eating about 5 oz of baby food a day (which is huge for him) he still looks tired and is fussy. This is not the real Avery.

I finally got an appt. with GI at the hospital. It is so frustrating b/c they just don't take it seriously that my baby is the weight of a 6mos. old baby and he is going to be 18 mos. on wed. BTW, it is a dr. I have never even heard of. So that means telling the same story for the hundrenth time and getting the response. And the you are really response. Gotta love those. Can you tell I am really into these smiley's........


I will let you know how things go. Probably much of the same. That is the horrible thing about this nasty disease is that there are never any answers but always . Such a pain.


Also, Isaiah forgot what is. Yes, my normally laid back easy boy has been up all night the last few night screaming b/c he does not want to sleep. So needless to say. I am a little irritable these days. Between him and Avery, I swear we are up every hr.

Yes it was a sad day today.....


Of a missed milestone.....

Learned how to ride a BIKE today and we did not teach her. Can you believe her 9 yr. old friend in the neighborhood taught her in a few minutes. We are so happy, proud and yet that our baby girl did not learn this from US, her Parents. Gosh these kids just grow up too fast.

I feel like I am finally getting some things accomplished. I actually painted the boys supply room. Previously this was the previous owners "dog's room fit with a canopy bed and fur clothes" There was even very she, she poo ugly wallpaper that covered even the ceiling. The wallpaper was a nightmare to take down. Mind you this room is all of 4x6 if even and it took a gallon of paint. BUt it does look fabulous. The color is a dark sage and it really goes with the decor of the house. Next is the god aweful bathroom that is covered in gold sponge paint and cherubs everywhere. Uggh.


Isaiah has had a really rough weekend. He is usually out of his spell by now. He is no better today and will not be going to school again tomorrow. I just feel sooo bad for my man. I just wish this pain could be taken away. It is just aweful to see him like this.

I am happy to report that Avery has been wanted to eat food by mouth. Yes, you heard right. It is so exciting. He ate a half of a small jar of baby food. Any way we can get calories in this guy. Was even able to increase his rate on his pump (feed) without any vomitting or retching. This is a HUGE accomplishment. Praying it stays and he will start gaining the much needed weight he needs. He is still quite fussy and only wants "mommy" He is great for my self esteem though. Just wish I had a few clones of myself for him though.

While on the whole parenthood topic, a friend of mine referred me to this great book for mothers. It is soo funny and speaks the truth. You have to get it, it's called "I WAS A REALLY GOOD MOM BEFORE I HAD KIDS" a must read.

I am so behind on work this week so it looks like it will be a long one. Amazing we have NO drs. appts. this week unless they turn out to be sick visits. Janessa should be starting gymnastics this week. I am excited for her. Can't believe it is already the end of October!! Where does time go?

Hope all is well for everyone. Much love.

I am soo Sad!!!

Yesterday, I spent all day a drs. appt. for Avery and one for Isaiah. Although Isaiah could not go because he started his retching spell and went home from school early. This was a really bad one. One of my newer nurses has not seen him like this and would not leave his side for a minute. She was totally depressed seeing him like this. He wretched (dry heaved) every 15 minutes for the entire day and needed Valium to knocked him out. This is typical for us and horrifying at the same time. But we are used to it, others new to this would be completely horrified by it. It is awful to see my man suffer like this. This was not even the worst part of the day.

Anyway, Avery was weighed twice yesterday and both revealed that he had lost almost 2 pounds in 3 weeks. The drs. all commented on how frail he looked. We met a new pediatrician yesterday and the poor guy was overwhelmed by Avery's history. I am sure he wanted to run for the hills. LOL! But he did give us good news, Avery was c-diff negative. Yay, we have been waiting for this so he could FINALLY get his cochlear implant, right...

Well not right. The other drs. that we saw later in the day all kept commenting on how he has been through so much lately and how he did not look well. The mito. dr. finally said that she just did not think it was a good idea for Avery to go forward with the implant at this time. I was devastated. I know what she is saying is true. He does not look well. He looks very weak and is very irritable and I know something else is going on. I know all of what she is saying is valid and the truth but my heart is totally broken. I just wanted to give him some normalcy with this implant. The ability to hear and communicate with this. But the fact of the matter is that Avery cannot even keep weight on him. He is just barely getting by. Things just really hit home for me yesterday. Again, the most basic things in life and my kids cannot even get that. I feel that when people look at my children that it is pity. Avery just looks so sick and I am trying everything in my power to keep him well. He just really needs a break.

I just need some serious strength right now. My heart is in pieces for these boys. I know once Isaiah is out of his spell he will be the happy little boy that he is but Avery has just not been happy in a long time. I feel like we have a newborn again.

My gosh, did this turn out to be a long vent or what. IF you have gotten this far, thanks for reading. It was just a hard day yesterday. Basically a reality check. BTW I did cancel the surgery for next week. We will work diligently to get some weight on Avery. I will keep you all posted on his progress. Love to all.