God is Amazing

With everything that life threw at us these last 6 years (I'm including the time I was pregnant with Kenny and Nick and even before that when I lost a baby) I have finally come to the peaceful place I am at (at this moment anyways) right now...I feel very blessed. The realization hit me like a ton of bricks after dropping Kenny and Gina off at preschool today.

 Oh, that's right...I forgot to post that Gina started preschool at the same school as Kenny. She is going as a peer model student. A peer model student is one who has normal development that is in the classroom with kids with delays or special needs. She is there to help the kids learn social skills for kindergarten. Anyhow, she loves it! It was one of the best decisions we've made. Yeah, its crazy for me to make sure all 7 kids up and ready for school every morning, but...hey...I'm one to live for craziness...I had 8 kids!
OK...so, anyhow...back to my revelation...
as I pulled up to the door to drop off Kenny and Gina for school (Gina has been going there for 3 days at this point), the drop off lady (I don't know what they are called) opened our van door and helped Kenny and Gina out of the van...all of a sudden, Kenny grabbed Gina's hand and they walked in to the school together. I asked the lady if she told them to do that and she said no.

OK, so as I am pulling away, I can see the two of them walking through the gym holding hands. It brought a tear...no...I cried like a big baby on the way home. I thanked God that he gave me such miracles...one..for all the kids I have, two...for Kenny because he honestly shouldn't even be here. For all the odds were against him...but he made it. And three...for Gina. God gave us Gina to help Kenny. To be the close sibling that he missed with Nick being in Heaven. Its hard to explain. I feel blessed in so many, many ways. Yes, I went through so much pain and suffering...and I still hurt...a lot, but I feel extremely blessed knowing that Kenny will grow and thrive, that Gina has a special place in her heart for her best friend and buddy, Kenny and I know Nick is looking down and watching over us.

Smile...

Well here we are again...the school year has started and the sniffles have begun. Beginning of the week, the older kids were complaining about sore throats and all had runny noses. If that isn't bad enough, Kenny and Gina both got whatever the older kids had. At this point, Gina is feeling much better, but Kenny is just getting worse and worse. He was up all night coughing which means it went straight to his lungs. Having a child who has BPD (or as they call it when they get older, Chronic Lung Disease) and catches a cold is not a good thing. I was just waiting for the coughing and throwing up to begin and it has started. Last evening at dinner, he was getting a tube feeding in his high chair along with us putting pieces of our dinner on his tray (which he was actually putting in his mouth) only to come back up. I had to sit him in the sink to clean him up, that's how bad it was. On a good note (if there is one), because he is pretty much on a liquid diet, it wasn't completely disgusting...I know...TMI...sorry. This post is going to be full of TMI LOL... So, anyways we got him cleaned up, the kids all got their baths/showers out of the way as well because it is picture day today at school. Finding outfits (that we had here at home) for these kids is like pulling teeth. I almost sent them in their school uniforms because it was THAT stressful. But we managed to pull off some very cute outfits. Next came the hair. All the girls wanted braided waves...you know, you braid the hair while wet, then in the morning, take the braids out and there you have the braided wave look. OK...now, I told these kids that they should be wearing their hair like they wear it everyday, which looks great...but they all insisted on this look, so...with a sick little boy coughing, puking and wiping his runny nose on everything, I started with the braids. I braided and braided...my fingers were about to fall off! Finally, after all is said and done, my girls were the braided queens and I was ready for a large glass of wine. HAHA!

This morning, was just as bad. After being up all night I woke up to my favorite friends that have shared our home since March...yep...the ants. This time they were in my kitchen and dining room. So at 5:00 I am sitting here killing these stupid nuisances which have aggravated me for the very last time. I then went on to ironing the "picture day" clothes that the kids laid out. On to waking them up. I should have a bull horn for this but instead I flick their lights on and keep up with the wake up call...Get up everyone, time for school...over and over again, sounding oh so much like a scratched record...but hey, it works. As the morning goes on, I have a 7th grader who couldn't find his homework, so I was searching high and low for this stupid notebook everywhere...only to see him, 10 minutes later, sitting at the dining room table "redoing" it. No comment on if he actually did it in the first place...I just dont want to talk about it. LOL. Then, I hear Kayleigh calling for me from the bathroom. I go up there because I already know what she wanted...to get wiped. she still doesn't like to wipe her butt when she goes poop...see....to much TMI lol...So as she is bent forward to get wiped, I see her new silver necklace that Tony (hubby) got her...laying on the bottom of the toilet bowl, sharing very tight quarters with a large poop. I screamed (not in anger, but in shock) seeing this...How the H#ll was I going to get this out? Should I just flush it with the other contents of the toilet bowl? It was a brand new necklace that wasn't cheap (it wasn't expensive but certainly not cheap either). At that moment, I thanked God for Paradime Medical Services for the supplies they bring me monthly. In those supplies were medical gloves that I never use...until now! The necklace was saved and the morning was good...or so I thought...
The time came for me to unravel the braids on 4 girls...Ok...I have to say, they didn't look horrible...but they and myself had no idea on how to style the hair once we got the braids out. I wanted to put Kayleigh's hair up half way but she insisted on wearing it down...part in the back and all...ummmm...I tried, but she threw a temper tantrum so I figured that the photographer would help with the hair. I just couldn't get upset over this (which I was). So, I took a deep breath, fixed each girls hair the best way for their personalities (except Kayleigh) and honestly, they looked cute...yes, including Kayleigh. Thank God, God threw in an oldest son who likes his hair short!

So as the kids are at school, our Kenny is home again today...so that makes 3 days missed at school...and probably will be home tomorrow too. If his coughing and not feeling good continues, we are gonna be heading back to the doctors office. I just wish that his doctors would have given us a pulse ox machine so I wouldn't be so paranoid about his oxygen saturation levels when he gets sick. So that is how yesterday was, and how today started off...and you know what...I made it through...laughing at everything (except for Kenny being so sick). Makes me think, what will the rest of the day hold in store for me...hmmmm....

Fortunate Friday...g-tube and all

Yesterday was one of those days...those kind of days that you think everything is going a little too perfect. Yeah...I let my guard down. I should have realized that I can never get too relaxed, too "OK" with everything. I actually was writing a "Thankful Thursday" post last evening (in between doing this and that for the kids). I was writing about how I am thankful for how good the kids were being yesterday. I mean...they were actually getting along...not one fight! It was very, very nice. I went on to write how I was thankful for how good Kenny did on his third day of school. After getting the 5 other kids to school...without any problems...and we even got there early, Gina and I drove Kenny to school. We parked and his teacher opened the van door. I got him out of his car seat, put his backpack on...then I waited for him to start with the crying thing that he usually does...NOPE! He walked over to the open van door and put his arms up for his teacher to hold him...and that was it! Not a tear shed (from him anyways)! The feeling I was experiencing was such a great, joy. I mean, my little boy is able to break away from me now without crying. He gets to do fun stuff. He is learning and getting therapies. I am so grateful for this.


Fast forward to picking the kids up from school...They all got home and did their homework. Sydnie and Kayleigh, Taylor and Morgan...and even Tony. Kenny was actually drinking from a sippy cup...he grabbed one of the girls cup and just was walking around drinking it...AND...it was filled with juice which is another big step.
So, as you see...it was a very nice day. A day to be very thankful for...until around 8:00 pm. that is. Dun dun dun...

Why does everything have to happen when my husband has to go to, or is at a job? He was at the school putting up names on the banner for the PTU when my son, Tony calls him to get home...why you ask? HA...Kenny's G-tube came out! Talk about a mom trying to say calm but slowly losing it...yep...that would be me! Backtracking just a few...

Kenny was very sitting in his highchair and I figured...ok...well, its almost 8:00, so I am just going to start his night time continuous feed while he is awake. Got him all hooked up and it was going just great when he ended up falling asleep in his highchair. I unhooked the long tube that is connected to the bag but left the smaller tube that locks and disconnects one piece to the other...I figured I'm just going to carry him up and re-hook him up to the pump. Tony (little) was carrying the pole with the pump and bag attached to it, upstairs., when I pulled out the tray of the highchair and then proceeded to lift Kenny out...and THAT'S when I felt a lot of fluid pouring out onto my hand and all over him! He started screaming, I looked down and his tube was laying there...balloon inflated and all! I thought...ok, ok...I can do this. They told me when he first got the tube in that if it came out, to put the tube back in (balloon deflated) and get him to the ER within 2 hours so the hole doesn't close up. I didn't know which way to turn. Kenny was crying, I was standing there holding this tube that was once inside his stomach and I couldn't for the life of me figure out how to deflate that stupid saline filled balloon to put the tube back in! Talk about panic setting in! UGH! Then...I took one look at his g-tube site on his stomach and it was bleeding! UGH!!!! I was just going to drive him but I wasn't sure it it was safe...I mean, he had a hole in his stomach...and not to mention I was just too upset. Tony came home at this time (thanks to the kids calling him to tell him) and we decided to just call 911 because they probably would know what to do. Talk about feeling like a newbie to all of this feeding tube issues...it sucks! I mean...its a great thing...I have to say that. I can see the difference in Kenny since he's had it...but between the infections and this popping out... I am becoming a very strong stomached person. LOL. Our days are definitely not boring that's for sure!

So we (Kenny and I) went to the ER again...with our two favorite paramedics, who happen to be working every single time Kenny needed the ambulance. We were there for about 3 hours...they put a new one in...yes, Kenny screamed, but its in and all is good.

This morning he woke up with the other kids and got on the school bus for the first time this school year...again...without tears...from him anyhow.


So my Thankful Thursday post is now a Fortunate Friday post.

I am so fortunate to have a great support system of family and friends...those friends that have BTDT (been there, done that) with issues that we are dealing with with Kenny have been a God send to me. I sometimes feel like Tony and I are very alone with the struggles of having a micro preemie who now has special needs...not just developmental, but medically. It can take a tole on a person...with all that it entails. Tony and I have learned to go with the punches and not let our guard down (except for last night), and to hold every moment very near and dear to us because, honestly...we just don't know what tomorrow will bring. We have been knocked down time and time again with one thing or another...we thought that the NICU stay was the worst that could/would happen...boy were we wrong. Not saying that having the g-tube pop out is a horrible thing...It is actually one of the easier things that we have faced. It just so much that this little guy...our family...has gone through in a short 3 years...sometimes its just overwhelming to think of everything we have been through (as a family) and yet, we are still here and still going strong (even though we are very exhausted from it all and could use a break...this testing us is getting old...tee hee).
I am so fortunate to have everything that I have no matter how hard it has been.
Now I must end this post because I have cleaning to do and setting up for a Camp Rock 2 viewing party that I promised the kids we'd have. They have invited some friends from their classes over so...this should be a fun time. You know me...I love throwing parties!