Tuesday, February 15, 2011

Doctor appts., Valentines Day, crazy things and prayers needed

Yesterday Tony and I took Kenny to his Audiology appt. followed by his neurology appt. It went pretty well...pretty much how we expected. For his audiology appt., they spent quite some time working on his hearing testing. Came to the conclusion that he does, in fact, have moderate-severe hearing loss...which we already knew. So back in 6 months for his next appt. I forgot to ask about the cochlear implant...which I think he would really benefit from...but we'll wait till the next appt.

His neurology appt went well too...We discussed cerebral pasly but the doctor also wanted to do some really in depth metabolic testing to see what is going on (if anything) with Kenny's body. SO this week, I'll be taking him for blood work and a urine sample. We also discussed Kenny having another MRI. The last one he had was when he was only a year old. I'll be making the appt for that tomorrow. He'll have to be sedated for this though...so yeah...a little nervous. I am finally feeling good that we will have an answer to all of what we are noticing (the wide gain, curled in hands when walking/running, tongue sicking out all the time, drooling, non-verbal, etc...). I know that it IS a possibility that it is just "extreme prematurity", but what exactly IS "extreme prematurity"? Is it that, even thought he never had a brain bleed...his brain's connections short circuited because of how early he was? Is it that he is just THAT FAR developmentally delayed because he was so early? Even the doctors don't know. Could he have some chromosomal problem? sure. Could he have damage to his brain even though he never had a brain bleed? Yes. The doctors have told me yes because his head was so small (about the size of a small clementine orange), that while his brain was growing, the connections didn't connect right. Does it bother me? Oh my gosh yes! Still feeling some guilt about having my twins, "frick & frack" as I called them, early...it does bother me that I couldn't keep them inside of me...knowing that Nick died because of being so premature...and Kenny has had so many battles that he had and still has to face. So...yeah...it hurts deep in my heart. And this is why I am fighting so hard for my surviving twin. I will work hard and give him what he needs to succeed in this life...to stay as healthy as possible. Its my commitment to him.

On another note, does anyone else have this problem?
Does anyone else have a kid (or kids) that eat butter like an ice cream bar? UGH...yuck!
At lease I wont have to worry about Gina and constipation. joking!!!!Oh...and on laundry day...Kenny decided he was going to line up the baskets of clothes...oh...and the garbage can. LOLThe kids having fun in the empty basket....Also...Valentine's Day came and went...and well...lots and lots of valentines...

Kenny was having fun lining up the mini nerd candy boxes...I decided to decorate and surprise the kids (and hubby) for V-Day...the garland of hearts were valentines to each of my loves.The kids woke up and Sydnie yelled out, "its raining hearts"! SOOOO CUTE! I am so glad I did this.
I have to ask all my readers a favor. Could you all please say a special prayer for a dear friend of mine. A friend who has been facing a tough battle of her own. Her son, Zach is the same age as Kenny. He has MITO (mitochondrial disease). To make matters worse, he is now in the PICU on a vent. He is fighting for his life with a serious infection. PLEASE, I am asking you all, please pray for this little boy. Him and his family are very near and dear to me. He is such a little fighter. He has spent more time in the hospital than at home for the past 3 years. It breaks my heart for him and his parents and older brother. I pray that he can make it through this...he just has too. Hugs your children just a little bit tighter tonight and pray for healing and comfort for him and his family. Thank you very much.

Sunday, February 13, 2011

In a blink of an eye

In a blink of an eye, you are born. The world is yours for the taking. All your dreams and possibilities are just all right out there for you to grasp.

In a blink of an eye, Those long years of school are over. Where did they go? Everyone goes their own way...in their own direction.

In a blink of an eye, your childhood is over. You are now an adult. Facing adult decisions...yet you still feel like a kid. A job, a home, a new start...all in a blink of an eye.

In a blink of an eye you can fall in love. Finding someone that is meant to be. Your soul mate...the one that you wish a lifetime was forever with. In a blink of an eye...you found the one.

In a blink of an eye, You go from just the two of you to three...and then more. The love you have created a beautiful life. From the first sign of being pregnant to delivery is just a blink of an eye.

Sometimes that little blink goes by quicker than expected or slower than expected...

Born too early. A child that is smaller than a 16 oz bottle of water. The NICU experience. The feeling of not knowing. The days that seem to go by slow. So slow that the world is passing you up. But as the years go on...it was all just a blink of an eye.

Then you get the what ifs, the hospital stays, the medical supplies, the medications and the diagnosis...at times you wish it could go away in a blink of an eye...but know in your heart that it wont...it cant...it is what it is.

In a blink of an eye...the world is much different. Life is different. Losing a child....in a blink of an eye...its so easy to say "I'm sorry". Its so easy to try to forget...but you don't. You wish that the pain, the helplessness, the heartache...all of it...would just go away...in a blink of an eye, but it doesn't. If that would happen one would never know the love, the compassion, the deep feelings of the ultimate love. To love even after a loss. To trust even after a loss...to feel...even after a loss.

Make the most of every day. Love life, enjoy your miracles...the good and the bad. Life can change in a blink of an eye.

Friday, February 11, 2011

sippy cup training...FAIL

I've got to tell ya. When there is only a small amount of time in the day to get my writing done...it never fails that there is something else happening. The reason for the long delay in posts are because my laptop battery life decided to take a nosedive and gives me around a half an hour unplugged. Ha...and it also happens that the plug to charge the battery decided to follow suit with the battery and break. So, I get a few minutes to write in between trying to charge the computer with a broken cord and a dead battery.
So, on with my funny story of the day...
On Wednesday, we took Kenny in for his check up at his Comprehensive Care doctor. He gained weight. He is no where near the actual growth chart, but he is following his own curve! He gained 6 lbs. this year! He has also gotten much taller. Anyhow...we are to try getting him off his bottles and onto sippy cups, which has been a pain! Kenny's doctor also looked over at Gina and asked why she was still on bottles (yes...I know...don't lecture me...shes 2.5). Honestly...I just haven't even thought about it...well, yes I did...but with everything going on with Kenny, I just havent...well...done it. So...Wednesday was the day! We told Gina that the bottles were gone. We gave them to a baby that needed them. It's easier to get her off of them because Kenny and Gina have two different size bottles. Gina has the 8 oz. Playtex drop ins...while Kenny has the 4 oz. I took all of the 8 oz. bottles and put them behind things in the cupboard, in the kitchen. So it was sippy cups for Gina! First night...cried all night for her bottle. It didn't help that she is sick. She was coughing up a storm. Because of that, she ended up puking all over her bed....yeah..lovely! So, first night was hard...woke up in the morning asking for it. I just told her that the bottles were gone and a baby that needed them has them. Yeah...no. She didn't like that answer, but took her sippy cup anyways.
So as the day progressed, I had to get some things accomplished around the house. Kenny came home from school and it was back to the chairs. Yes...He has really gotten quite good at maneuvering those dining room chairs all over the house. So while him and Gina were playing with the chairs...and the canned goods in the kitchen. I was ordering a new batch of medical supplies for Kenny. I had to walk out of the kitchen because the noise that those two were making, made it sound like I was in a playground with tons of kids and an Ice Cream truck! haha!
So as I am talking to customer service (an actual person, not a computer....woo hoo), Gina comes in the room saying, "I want a baa-baa...make it, puh-leese". I looked at her...and there she was, holding a found 8 oz bottle, the nipple and the nipple ring...and the gallon of milk (which was almost empty). I told her no...and to put it back. No baa-baa's! She stormed off back into the kitchen. Still on the phone, I noticed Kenny walk into the living room with a wet sleeve...I went onto the kitchen thinking I was going to see the milk everywhere. But nooooo....there was only a little bit on the counter and Gina standing there...with a bottle...filled. Bottle bag put in, milk poured, nipple on...yep...she made her own bottle! Little booger! So, now I figured I have to actually get rid of all bottles in the house and maybe hide the milk. ahhhh the joys of motherhood!

Friday, February 4, 2011

The haystack gets bigger...but not impossible!

Let me start off by asking...you know how hard it is trying to find an ear mold to hearing aids? The answer....Like a needle in a freaking hay stack! Remind me to get his ear mold a bright color the next time he goes to his audiologist! We finally found it after a week of looking for it...yeah...thanks to Kenny deciding to rip apart his hearing aids and throwing them wherever the heck he wants to. There has got to be a better solution for keeping these things in his ears and not in his hands and lost. I do have the bungee band to hold them together so he wont lose them by accident...but he has learned to take them apart and make us all...yes...all of us living in the house...8, not including him....to search EVERYWHERE FOR a little one inch piece of clear plastic...haha...it makes for an eventful evening er.. week.

This brings me to something else that went on this week. I had a teacher/parent conference with Kenny's 1st step teacher. It went amazingly well. He is really working on reaching his IEP goals...he has met 2 of them so far. She also had his report card that she wanted to go over in person. She wanted to go over it in person because she felt that it really wasn't pertaining to Kenny at this point. He is no where near any sort of academic grading yet. We had a long talk about his delays. I told her that I knew that he was really behind...he is almost 4 and acts younger than Gina (who is 2.5). I told her that I was alright with knowing this...when in fact...deep down inside, I am so broken hearted. She told me that he was around 18-20 months of age...developmentally. Yeah...I knew this...but still, being told this by someone who knows a thing or two about special needs kids kind of made it a reality that I DO have a special needs child...not only chronically ill...but developmentally. This is something that I am really trying to work through. He is still in need of hand over hand help with many activities, doesn't know how to use scissors (where as Gina was just using a pair of them to cut paper). He is grasping crayons in a fisted grip and has just started to use the four finger grip. I mentioned his gait and how when he runs its like he is Frankenstein running with legs far apart and his arms curled up and in. I also talked to his doctors about this and they have noticed it as well. So come Monday, he has a Neurology appt. and also an Audiology appt. I will find out more then.

Oh...he is also a lefty (well, at least, he favors his left hand)! I have a very cute thing to share about this...my brother (whom I sort of named Kenny after...see, we have a million "Johns" in our family and I really wanted to honor my late brother and my dad who lives in AZ with my mom....but in our family there are just...too.many.Johns. LOL

Then my husband had a good friend many years ago growing up who's name was Kenny. He passed away when he was a teenager from cancer. So the Name Kenny (Kenneth) was a "no brainer"....and now...this solidifies us picking this name for such a strong little boy!
So basically, God has blessed us with a miracle that will keep us on our toes minute by minute!