The stressful life of an older micro preemie

The mornings go something like this....
Wake up at 5 am to enjoy a little bit of me/quiet time. Wake the kids up for school....wake them up again...and finally one more time did the trick! I make sure the kids put their clothes, socks, shoes, backpacks with all homework in it, and anything else they need, out the night before. This usually means that I am running around like a crazy mom trying to find one thing or another in the mornings. They are finally up...all 6 kids, that is everyone is up except for Kenny whom I try to let sleep as long as possible because I know when he gets up, the morning...the tranquil for the most part morning will be totally interrupted.
uh-oh...he's up! Darn...this is waaaay to early for him to get up! I have to iron some pants and a shirt or two, look for Kayleighs missing school shoe, break up an argument between sydnie and Morgan, sign a few papers that were given to me last minute...because my kids just...well...forgot to give them to me.
ok, all is ok...he's got his bottle of pediasure and his "taggies" which are the pajamas with the snap over flap covering the zipper...yes, he's the only kid I know that has always loved this taggies! I have to make sure he has his clothes out for preschool, especially his shoes. Oh the shoes...his biggest obsession! He HAS to have them on as soon as he wakes up in the morning or he flips out. It has since gotten much worse of an obsession as to now he is obsessed with making sure I have my shoes on and Gina has her shoes on. When I tell him no, all he** breaks loose! The quiet setting has turned into the worst stress scene you've ever seen! The screaming at the top of his lungs...and it's a high pitched scream...followed by the occasional head banging, removal of his shoes (which are then thrown), his socks go next and finally his shirt and pants! He has tried to remove his diaper but I've caught him before that point. If he'd of had his hearing aids in, those would be taken apart and thrown all over the house where we'd have to search for them for hours!
These breakdowns just don't happen here at home in the mornings...Nope, they happen all day long here, it happens at the grocery store, church, basketball games, restaurants, etc...they have made me/us a prisoner of my own home! I though RSV season was bad...this is by far the worse thing I've had to deal with. We've tried time outs on the couch, a smack on the hand, ignoring and several other discipline ideas...the thing is, he knows some things, but still developmentally delayed as to not understanding everything.
I am lost, down and extremely discouraged about this...and it's just getting worse! I've put calls onto his neurologist, his comprehensive care docs, and also his autism worker that is working with us with the P.L.A.Y. Project...I'm just feeling broken right now. I guess this is what the doctors have warned me about...and I never thought he'd be like this. I feel so bad because I'm trying to do the right thing but I don't know what it is. His OCD had gotten so bad and I'm scared.
Are there any other mom/dads/guardians out there that have had an older micro preemie going through this PLEASE help me. My heart hurts for him, my stress level is well beyond my limit and I just need encouragement that this is fixable.

Taking it day by day

The last two weeks have been pretty tough...ok...so actually...this whole "ever since the kids got out of school" has been tough. Doctor appts, husband busting his butt with work, kids fighting (one with ODD), Kenny screaming constantly, and then the deaths of my good friends little boy(almost 4) who had Mitochondrial disease and a micro preemie mommy's little one, Dominic, that was born at 22.2 weeks....fought to live since March...and couldn't fight anymore. It just seems like we are just going through the motions of each day but not living them. We haven't had a break to just have fun, relax and just breathe and I am starting to feel the effects of it all.

Last week, since we couldn't physically be there for my dear friend on the day they had to bury their precious son, we went to he cemetery (where Nick is at) and had a balloon release for ZachWhen we got there...it was 1:11... this is one of "those" numbers that whenever I glance at a clock or whatever, it is either 11:11 or 1:11...so...I just knew that Zach and Nick were together watching!My kids felt very bad when they heard that Zach had died...they wanted to do something for him...and this was something that we could do as a family. (Hubby was taking the pictures...which is why he wasn't in any of them...love ya sweetie...thanks!)...And there they go...up to Heaven!

My heart breaks for the pain that my friends are going through. I pray that everyday brings just a little bit more healing...but I know the emptiness...its so raw. Please keep all parents who have lost their little one in your prayers.

And of course I had to get a picture of my boys. Look at those handsome kids with those smiles! God, I wish Nick was alive

So anyhow...

We took Kenny to the Cleveland Clinic for a second opinion neurologically. I had his huge binder with all of his medical records and I even had a copy of his MRIs. It was a completely different setting than MetroHeath....which is a great hospital in itself (my opinion). You can tell that it was a richer hospital...I mean, instead of paperwork, they now give you small computers to walk around with, fill out and give to the doctors/nurses. I thought I was in a different country! haha. Tony dropped me off because we had no idea where to park...I walked in and it was like walking into an airport terminal...huge..and they even had a waterfall and a stream in the middle of the lobby! I walk Kenny to the elevators, go to the pediatric neurology dept. and sat and waited...and waited...and waited. In that long hour of just sitting there, I'm looking around at all the parents and their kids. They were of all races, ages and backgrounds but one thing in common...all of the parents had that same look on their faces. The look of worry and stress. How can I be sitting here with all of these other families? My child never had a brain bleed...just really early...he should be fine and catch up, right? Ah...the million dollar question...he should catch up.

...Oh...they called our name...time to go in. Weight...30 pounds, height...39 inches ("oh he's tall and thin", the nurse says). Then the questions...Allergic to anything? Illnesses? What meds is he currently taking? We finally get in to see the doctor. He looked over the MRI, talked with me for a while and then looked at Kenny. He was very open and honest with me about Kenny. He told me that he sees this a lot with micro preemies...the tight muscles, the nonverbal, etc. I asked him what he thought of his microcephaly, small cerebellum and arachnoid cyst and he told me pretty much what Kenny's neurologist told us...that it happens. With an older preemie, they know the outcome of different things...but with a 23 weeker, they are still finding things out. Like even though there is no sign of brain damage on an MRI, it doesn't mean that there isn't any. These doctors are treading water with all of these preemies, unable to give substantial and point blank diagnosis because they just don't know. The medical field is just now seeing the results of being born at 23 weeks in the kids that actually survive. There is a HUGE difference in a 23 weeker to a 24 weeker in terms of survival...and I am just now understanding that. When I tell them that Kenny is a surviving 23 week twin, they are simply amazed.

The doctor told me that the small cerebellum and cyst is common in kids with developmental delays. I then asked the question that has been haunting me..."Isn't developmental delays a kind way of saying that someone is mentally retarded"? The answer...YES. UGH...my heart felt like it broke into a million pieces, and the tears started to flow. How can my child be mentally retarded. no..No...NOOO!!! I want him to be normal. I want him to go to school and have a girlfriend, get married, have a family of his own and a good career. He so badly deserves the best in life...not a label of this! I know I am being politically incorrect by calling it mentally retarded, but honestly...a delay would be that he'd catch up...they just told me that he will always be half of what his age is mentally! These are just my raw feelings and I don't mean to offend anyone. See, no doctor had the balls to call it what it was. No doctor sat with me and just talked to me like a mom of a kid with tons of health issues....until now.

So this cyst that is in my beautiful son's brain...its fluid filled and is fine for the time being...that is, until he starts to get headaches. OK...so my son cant talk, he tries his hardest to communicate, has a super high pain tolerance...how the heck is he going to tell me that his head hurts? He already bangs his head and screams almost all day long...so that is not a way to see if he's hurting...so, back to the drawing board on this one. We'll just have to keep an eye on it. If he starts to get headaches, then operating will be the next move.

So we are going with a few different diagnoses: Epilepsy, developmental delayed (mental retardation), mild Cerebral Palsy, mild Autism (somewhere on the spectrum), Microcephaly, Cerebellar Hypoplasia with an Arachnoid cyst...all brain stuff.

Followed by: Chronic lung disease, Gastroparesis, an immune deficiency, etc. etc.. etc...

What it really means is that my son is special. He may need a little bit more help to do things...but he is here and here for a reason...and doing pretty good for a 23 weeker, I might add. All these stupid diagnoses do is worry and upset. I hate it but I know that in order to get the right therapies and help, I need to know exactly whats going on.

I am finding out that this whole being a mom thing is pretty tough but worth every second!

It takes a lot of energy to take care and raise one child...but 7 and one with special needs...exhausting and there are no breaks. There is always some new challenge...always a new worry...a worry different from the normal family life.

Its all just a day by day life I guess.

Never take this day...your husband...your children...your life for granted.

Chairs all in a row...

This is what Kenny has been working on...all day long. He gets the chairs from the dining room and drags them into the living room...I then put them back....and he decided he needed them in the kitchen...Chair #2...positioning chair #3Oh boy...the chairs are lined up nice and pretty...Getting the last two chairs...ugh...After I put them back...he proceeded to put them back in the kitchen. I then put them back around the table again only to come into the living room to this!He then got bored with them lined up that way so he started lining them up in front of where I was sitting... Since this picture...he has lined them up several more times after I put them back around the table! I know its harmless...but there is only so much a person can take with lining chairs up! This is where his autism is kicking in. I strongly believe this. He is very busy with this and is putting a lot of thought into placement of these chairs.

Gotta love a special child!