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.

Janessa has strep throat. I am in complete shock. She has never had it before. She has not been on an antibiotic since infancy. Janessa hates to take any medications whatsoever (I think she thinks she will get what the boys have (sad face)). What a change to have to give her medication. It is like I don't know how to give a normal kid medication. I am just so used to kids with feeding tubes. Weird huh.

Isaiah's first full day of school tomorrow. He usually goes half days b/c that is what he can tolerate but his school really wants him there more. I am just worried that it is too much for him. I guess we will see. My boy is just growing up on me. I wish I could stop time.

Avery, well. What can I say about him these days except he is just a little stinker. He sooo plays the nurses. He just gives them such a hard time. Then when I walk into the room he just smiles with all those teeth. We are waiting on his c-diff results. Please, Please pray for negative results. He is scheduled for his cochlear implant on the 26th of October and the boy really needs to hear. It keeps getting put off b/c of the c-diff. He has had it twice and it has been before both scheduled implant dates. Can you stand it!!!!

Thursday is a crazy day. Avery has 4 appt. at 2 different places and Isaiah has one in the afternoon. I can do it b/c I am WONDERWOMAN..... Yeah right. Then Avery has pre-op the next day. Gotta love my life. Please keep us in your thoughts and prayers this week.

Some pictures of NYC and Nessa's sleepover

BTW the boys did NOT sleepover

Janessa's party was CRAZY on friday. Eleven 7-8 yr. olds + one adult = madness. Yup you got that right. From 6-9 we had 11 kids at the house. They made sundaes, picture frames, had dance-offs. It was fun but certainly crazy. The kids went to bed at 11 pm and were up at the crack of dawn. It was nice to see Janessa reconnect with her good friends. She wore a birthday crown and a sash. I will tell you that this has been the longest birthday in history. Thank god they are only once a yr.

Poor Janessa has been sick all day today. Problem runned down from all the excitement. She is complaining of a soar throat and very lethargic today. She will probably go to the drs. tomorrow, hopefully just a 24 hr bug.

The boys have been feeling good. Isaiah is just in a great mood as always, and then there is Avery. He is soooo spoiled. He wants to be held 24/7. I think it was from being in the hospital for so long and getting so much one-2-one attention. He is so darn cute and off he just bats those looong eyelashes and those big teeth. It is hard for mommy to resist. But he gives the nurses such a hard time.

Speaking of nurses, I had trained a new nurse to work nights last week. We were so excited about getting some extra help. Well she called yesterday saying she could not do it b/c my boys were much to complex for her. That just so saddens me. To know and realize that they are that sick. Maybe I am in denial. I just hate hearing things like that b/c it is a big slap to reality.

positive thinking;

I am happy Janessa had such a good time at her party

It was good for some of my good friends to come visit my new home

Almost 2 weeks and no hospitals, we are on a roll.

Can't really think of many more for right now.

Praying for all the families that are enduring any illnesses with their children

Tomorrow is the big day. Yup, seven girls at the house for a sleepover. Wish us luck. Janessa is so excited. She has planned the whole party herself. She even came up with the date herself. What a good kid she is. I actually think it will be fun. Although I doubt I will be getting much sleep. Rick conveniently is working. Guess I will handle the fort as usual.

They boys had a good week. No hospitalizations this week. Always a plus. Although, Avery's lovenox levels were really low so back to the hospital for bloodwork. He is still so very thin. I am just really working to get some weight on the poor boy. Lots of smiles which is just too funny b/c the boy looks like a jack-o-lantern which his 15 teeth. He is just too cute. Isaiah has just been so very happy. I just love it.

We hired another new nurse, Yay. So I get to go to Rick's games when the season starts. I really feel more like a nurse than a mommy. I am looking forward to being a mommy for awhile. Just joined Janessa up for gymnastics. She will love it. Can't wait to get her going with things. Rick and I need some much needed time together. I cannot remember the last time him and I went out together alone. Hopefully this means more time for us.

Time for thanks.

1. I am thankful that Avery is looking better

2. Happy Janessa gets to see all of her best friends tomorrow

3. Always happy when Isaiah is feeling good.

4. 9 days and no hospitals

5. Thankful for more help with the boys

As you can see things are pretty much based around the kids. I am looking forward to have some Nicky things and time. I really need to find something for me like a bookclub or something. Any ideas???

Did I mention that I really need to update this blog. It is kinda boring. I friend of mine has an awesome blog, I really need to get some tips from her. So that is what I can do for me. I just know nothing about computers.

So Janessa had a great birthday. We really wanted to make it special as life has been so crazy for her especially with the move and the boys. She got everything she wanted and we went to the homecoming football game and the crowd sang happy birthday to her. It was so awesome.

Sat. was crazy. I went to a birthday party with Janessa and took Avery with me. Thank god, because my nurse had been trying to call me b/c Isaiah stopped breathing b/c he had a mucous plug. She had to call 911 and he got taken to the hospital. He got stabilized pretty quickly but certainly a very scary experience and an eyeopener for us.

Avery has been pretty crabby. He wants to be held 24 /7 which is very difficult with the rest of the brood. I swear me and my MIL are ready to go and get him a baby swing that will fit him. He loved his swing, weight wise he will get awhile out of it as he is only 17 lbs but he is pretty long. Isaiah has been still having respiratory issues as well as Avery today.

Things are pretty crazy but worse than usual. I swear you need 2 people at all times to care for the boys. There is not a single moments rest. I even forget to eat. I feel so unproductive lately. It is also sad b/c I will always have to rely on nursing to help care for the boys which is another headache in itself. Lately, I just feel like I don't belong anywhere. KWIM. I feel that very few people can relate even though they try. It is a pretty lonely life. This is me feeling overwhelmed and bad for myself.

On the plus side. We did go to NYC with Janessa and had a great time. It was a perfect day. She was so thrilled. It takes little to please kids. She was more excited about the subway than buying any toys. It was nice for Rick and I to spend alone time with Ness.

What I am thankful for:
*Janessa is such a great kid and had a great birthday
*we were able to go away on Sunday
*My nurse knew exactly how to handle Isaiah's crisis and he is okay
*My mother-in-law is our life-saver. She helps us out so much
*I was able to catch up with family that we have not seen in a long time this weekend
*we are not in the hospital (5 days home. Yay.)

We are doing well. So far we have managed to stay home for 3 days. Avery is slowing kicking back. Although this hospitalization really did a number on him. He looks so thin and frail and is super fussy. Please pray that he starts to feel better and regains what he lost.

Janessa had a great birthday. She will have a really special day on Sunday. Rick, myself and Janessa are going to NYC to see Mary Poppins and she will catch of with her cousin Mia. It should be real fun. We all need this, as you can imagine we get very little time together. Isaiah and Avery will stay home with the nurses. It will be nice to get a day away from medicines and just being a "nurse mom". Gives us a chance to family somewhat normal. KWIM.

Today I got to meet Connor and new baby, Rick's cousin had a beautiful baby boy. What a good baby. Congrats Melanie and Jeremy.

HAPPY BIRTHDAY JANESSA

Our sweet baby girl is 7 today. Have a Wonderful Day.

We love you

We Are Home

Wooohooo. Avery got home late today. Praying that we have finally broke this awful hospitalization streak. Can you believe it's been about 8 weeks on/off. We have not been home more than 6 days without a hospitalization in 8 weeks. This poor baby has literally been through hell and back. He has so many black and blues throughout his entire body. He has lost a pound which for him is alot. It took us 9 months to get that pound and now we are starting all over again. He is 17 months today weighing a whomping 17 pounds.

So he has not port or central line access b/c of the blood clot. So we are back to worrying about him being dehydrated. But it is about quality of life. I just cannot put this baby through another surgery and hell that we just dealt with. He now has to get 2 shots a day of a blood thinner for 3 months to prevent future clots. I practiced all day today and thought I could do it but when the time came, I just could not do it. Rick had to do it. It just breaks my heart.

He also has c-diff (remember I talked about this before) it is an infection in his bowels that is very hard to clear up. Causing tons of the nastiest poop you can ever imagine. So now I am worried he will not get his cochear implant next month. So still lots of worries.

Now lets talk positives. Enough of the negativity.

Rick has the best group of people working with him. A couple of teachers from his work decided to get together and make a basket b/c they knew we had been struggling with Avery being in the hospital so much. Well this quickly turned into the most overwhelming generosity you can imagine. We are just so very lucky. We have such great supports around us and many people praying for us. This is what helps us through all this madness.

Another friend's friend came up with an idea that I think is great on her blog and that is post a few positive things at the end of the post. Well here goes.

1. I am sooo happy to be home as an entire family.

2. Very grateful my little man is such a fighter and has overcome so much in the last few weeks.

3. Grateful for the great jobs Rick and I have.

4. SO happy, Isaiah is in such a great school with people who love and care for him and he is happy.

5. Excited about my baby girl turning 7 in a few days.

6. Grateful for meeting another mom who has had similar experiences and that she helped me see that I have a great life and things could be so much worse.

7. So happy about Rick's cousins Melanie just had her first baby boy and I can't wait to meet him and also excited about meeting my cousin Jaime's baby.

So overall, their are many things to smile about. We are very lucky people. BUt I do realize that I am still able to feel sad and vent when I need to.

Thanks for reading this long vent. Hope all is well with everyone. Much love