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.

Tired and exhausted from "special/chronically ill needs".

Sitting here chillin after a very trying morning.

Kenny is sound asleep after me having to hold him from screaming, crying, banging his head and pretty much not caring if he hurts himself. No, it wasn't a typical temper tantrum that he was having...it never is. They're not caused by anything in particular...they just happen. Usually from either being over stimulated or when his routine gets interrupted by something that doesn't usually happen...He has Autism...and these tantrums are autism meltdowns. We got the diagnosis a few weeks ago along with a few other things. The day finally came a few weeks ago...the queasiness that I've had for weeks prior. Knowing that there was something they saw on the MRI and us wanting the Neurologist to explain everything...the time finally came. The doctor was very thorough with everything he was telling us. He told us what we already knew..that Kenny does in fact, have microcephaly. He also has a very small cerebellum.

He went on to explain, that, because his cerebellum is so small, his balance, muscles, speech, feeding issues...basically...the input to output process is affected...all of this is affected. On top of the small cerebellum, he also has an arachnoid cyst (which is basically filling the area where the regular sized cerebellum should be...just picture an area where there should be a baseball...and instead, there was a golf ball with fluid all around it...yep, that would be pretty much what is going on inside Kenny's brain. The doctors are keeping an eye on everything and of course he has to go back in a month. What scares me the most is the fact that he didn't have this cyst on the first MRI but then it showed up on this latest one. We are also dealing with the fact that he does have mild Cerebral Palsy (which I already knew).

We are also facing the issue with his immune system and the genetics team found something with 17p13. So we will be going to his Immunologist this coming week and the Genetics specialist in the near future.

It just seems like so much for such a little guy. Right now, he is sitting on me calmed down. I am thinking about getting him a weighted vest or something. I feel like I am going through this completely blind. Like I'm forgetting to do something or that I'm overlooking something so simple. He's in speech therapy, Occupational therapy and physical therapy, several meds a day for different issues...from epilepsy, slow emptying stomach (GERD), lung meds for his lungs, feeding tube for his feeding issues...what more...what else? Do we get him an Ipad with all of its apps that I've heard nothing but great things about? I dont know. I wish I did know. Its one diagnosis after another when I just wanted to have healthy twins. I just want him to be a normal, healthy kid. I dont want him to be this way. I know he's happy and doesnt know any better...but I do. And I'm sad for him at times...but then, on the other hand, I am so proud of him and what he has accomplished.

In a world so quick to judge, we have been hit with such a blanket of issues. All of which affects everyone in our family in many different ways. I am so lucky to have a great support system of family and friends. I am blessed to have an amazing husband who has walked the same walk as me...all the while...hold my hand. We've cried, laughed and become closer than ever because of...well...this life that was given to us. What has happened and what will happen...we will conquer together.

...but boy could we use a little breather.