Picture of Maggie

I had forgot to mention Noah's new puppy that he brought home with him from Missouri this summer. I hope to have her seizure trained soon. She is very loveable and has grown into a whopping 60lbs of fun for Noah.
She is his best friend as Noah says...

The Holiday's have flown by us once again and we are into the new year. I am going full force this 2010.
I have teamed up with two of my friends who together we have shared many trials from prematurity. We have decided to focus ourselves and write our book that has been in our thoughts for the last few years. It is an exciting venture for all of us. Even in the bad times there is 'good' to come out of every situation.
It will be an interesting book from the perspective of three mothers' who have had babies born micro-preemies, how they survived, how the mom's meet, how they continue their contacts throughout seven years and what their ex-micro-preemies are facing today at seven years old.
One mom lives in Singapore, one mom is in Kansas and me of course I'm all over with my husband in the Military so it really should be an interesting book.

Noah had a great Christmas this year and yes he got all that he asked for from Santa. Noah has been seizure free since October so we are praying that this will continue. I am in the process of changing Neurologists. Due to the fact that Noah's current Neuro does not do "Hospitals" has anyone every heard such a thing?

Dear husband received orders today from the USAF for Tyndall AFB for six months. Noah and I would love to go with him on this TDY but I can't seem to figure out how it will be possible.
I do not want to mess up any of Noah's school schedule considering he is doing much better.

My niece Stephanie is expecting twins in April. She is in the hospital at Ft. Bragg right now. She is stable but they are sending her husband Tony back from Afganastan. He is in flight tonight as I write this blog. If the babies were born tonight they would be 26 weeks gestational and the each weight just over 2lbs. Already bigger than their cousin Noah.

What does it feel like to be me?

Now, this is coming from my own perspective but sometimes I want to scream. I decided tonight to sit down and write out my feelings about what I feel towards being the mom to a special needs son.

I feel jealous of other mothers with their typically growing children, you know those kids you see at the pediatrician's office just sitting in a chair quietly reading a book. Meanwhile, mine is the one opening and closing the fire extinquisher box on the wall, turning the lights on and off, opening and closing the receptionist window. He's the one that everyone smiles at or stares at as I try to repeat his name trying to redirect his attention to something that might slow him down a bit. I'm the one who gets the "oh, I'm so sorry" look from professionals or that stern eye from the parent who does not understand what I'm going through.
I get jealous when I hear that someone has had a nice vacation to the islands or a cruise knowing that there is no way at this point in my life I could just up and leave my child with someone for a week and skip about on the white sandy beaches of the Caribbean. Oh how I dream that one day that will be for me.

Yes, I do get jealous often. I try not but I do.
I'm ashamed to admit it too.

I get jealous when I think about mom's who take their children for granted. The ones that just assume that when you lay them in bed at night they will wake up in the morning still with you because I'm still afraid to let mine sleep alone due to his nocturnal seizures which cause him to turn blue. I envy the mom who expects nothing but perfect grades from her children or expects them to obedient at all times.
The mom who gets to go to baseball practise, soccer, basketball, dance lessons, ballot, Karate or gymnastics. Yep, I'm jealous of her too. She gets to sit and watch her child succeed in something. So I get that little sting of jealousy in me.

I get jealous of the mom who cringes at the thought of her child getting a flu shot or vaccine when I sit here and can't wait for the pediatrician to call me to let me know they are available right now because my son can't afford a flu virus. Oh yes, we all get the flu shot in this house. It's a rule.

I envy the women who can run a business like I use to do before my son because they get out, they get to meet people, they have conversations that don't include words like, seizures, brain, therapy or doctors.

I've watched children mock my son, run from him, hide from him and walk away even while he was begging them to come and play with him. So saddened by the incident that I've learned to stay clear where there are many children playing in one place. Making excuses as to why we could not go to McDonald's playground that day. My son crying in the carseat in the back. Children don't understand and quite honestly some can be just plain rude. My son looks different because of his blind eye and that is it. He is quite the handsome little boy if you don't see the blind eye.

Then there are times when I see the fortunate side of sitation. I was in Walmart one day and saw a mom with her two blind twin boys and a thought went through my head how blessed I am. My son is blind in one eye but only one. I stopped her and spoke with her that day and she and I both cried together standing in front of the Optical Store (how ironic) and told our stories of survival to each other. It may have only been 20 minutes but is was time well spent.

Times when specialist told me that my son would never do certain things, but he did. Days of devastating news turned into years of triump and joys. My little boy who no one believed in did survive the odds.
I wonder sometimes what he would have been like if he had not been born too early. I'm sure he would have been amazing just like he is now.

I have God with me always, guiding me and leading me down the paths that I need to take. I know this.

Recently, I was upset by a certain situation and I wholeheartedly cried out, God, WHAT? Show me What it is that you want me to learn from this situation? Then he spoke to me, very clearly, he said it is not you, I'm teaching them and from then on it has been a little easier on me to accept certain situations.

I need to keep up on this blog more often. Don't know why I don't. I will post more to this later.

Day 2 after Noahs "Big" seizure

It was a hectic day for me. Here it goes...
We saw the Neuro yesterday and we decided to take Noah off of Keppra his new seizure medication. His behavior is worsening and its becoming scary. Noah has been changing emotionally for a while now and some days it is more than I can handle. The last two days of drs. appts have been hectic, but Noah has been out of control. Bitting,hitting,pulling hair and throwing and of course this is all happening to me. In the Neuros office yesterday we could not really concentrate on what to do for Noah because he was acting out so bad. Its sad to say but Noah reminded me of what little Helen Keller must have been like when she was out of control. I was in tears. We decided to put Noah on Resperaol (sp) a antipsychotic drug to help with behavior. They use this drug for children that are Autistic or ADHD, the doctor said he was not saying that Noah was either of these two but than he did need some behavior control and this should help him. He said that we start him on a very low dose not what it would be if he was diagnosed with Autisim. So I was ok with this.
I spoke with his teacher this morning and she said she didnt want to tell me but Noah was really horrible in class yesterday. Throwing,pushing, bitting chairs. I told her about the new medication and she agreed that something had to be done.
We had a nice chat this morning. She told me the testing was done on Noah and she couldn't get over the fact of how smart Noah really is. She said she had to use a different testing form above his age group for him because he is so smart. She said that he is by far the smartest in her class even well above the role model students, but emotionally hes like a two year old. She believes it has to be medication because she sees emotionally disturbed children and they are always mad about something but Noah is happy all the time and then has these outburst. I told her that I think now is the time for a behavior plan to be put in place for Noah and she agreed. She said all of this was going to be discussed at the meeting.

I'm sad at this news, but I did know that it was coming. I am hoping that the new medication will help him to settle down some and focus.
Overall he's doing better physically. He seems to be getting over what happened at school the other day.
He is still coughing some but seems well.

My biggest Fear... is now a Reality... Day May 1, 2007

Today was Noahs first day back at school since his illness. He's still coughing but has been on antibiotics for 6 days and I watched him closely yesterday (monday) for anything weird going on but he was fine all day. We played with all his toys, he's back to eating and drinking normally we even took a drive last night to watch the sunset in the florida keys (it's breathtaking). SO, I felt pretty good this morning about sending him to school. He was actually happy to go back.I left him at about 8:25am and came home. At around 9am I recieved a call from his teacher, she said, Noah's acting strange. She said his PT had him outside and came back with him and said that he's not walking normally. She said he's not got good color and his eyes are all over the place. I asked, "have you dialed 911" and she said we are still monitoring him. I said, "I'll be right there" and hung up the phone. I now know I should have said call 911 and I will be right there.It normally takes 15 min. for me to get to his school and about 8 min. into my drive the teacher called me and said we are going to call 911. I said, what? She said we are calling 911 and that Noah definately looks bad he is turning pale all over with blue lips and not responding with eyes rolled into the back of his head.... I teared up... driving to school... all I could think of was that I was not there for him. She said that EMT's have been called. I got there and he was still unresponsive. Acting sort of out of it, very pale but his lips were getting some color into them. I said his name 3 or 4 times before he recognized who I was and said, "Mommy I go home". I almost lost it... I grabbed him and put him in a rocking chair with me. The EMT's arrived and took us to the hospital. Noah perked up on the ride to the hospital talking and doing normal things.When we arrived they lowered the stretcher to the floor and I stood Noah on the floor while I got off and he almost went completely backwards. I didn't understand that he had no balance at all. It was bad. He could not stand alone without assistance. I sat him down in a chair to pull out I.D. and information and he fell over forward and almost most hit the hard surface of the hospital floor.I was freaked out... and stressed out.. He gradually got better and they monitored him for a few hours and then eventually I got him to fall asleep something he desperately needed.They let us come home. We are to watch him closely tonight and follow up with doctors tomorrow. We increased his Keppra to one more dose. They truely believed that due to his being really sick last weekend that his seizure threshold was not where it should be and thats why he had a seizure like that.This is Noah's second seizure during the day. Most are always at night right before he sleeps.I know it really scared me, the teacher, DH, the principal and everyone including the children in Noah's class.I took Noah back to school right before they were all due to leave for the day so the students could see that he was alright just in case it scared anyone.Well... Sorry I've really not been around but I have had my hands full this week. I will be in touch.Candi --------------------
"The Expert in anything was once a Beginner" - Unknown"You don't have to be in the lead if you have the heart to come from behind" - Unknown

Noah's Big Friday the 13th

No really big thing today, I took Noah to school at 8.am. and he was dancing to music when I picked him up at 2 p.m. I purchased Noah this bike today that looks like a dirt bike (motorcycle) he told me to take it back to Walmart but honestly I think he really just wanted to go to Walmart. Noah already had a bike but it was too big for his little body so I'm selling it. Dad came home earlier than usual from work so we had dinner and went out for an ice cream cone around 7p.m. Noah was ready for bed at 8 p.m. I put up Halloween lights in our bedroom window and there is a pumkin in our front window. I'm trying my best to get Noah ready for Halloween this year. I want him to have fun and enjoy it. I think he's going as Tom Sawyer but the more I think about it they have some really cute "Cars" the movie dress up wear at the BX Mart and I might just break down and purchase one of "Lightening McQueen" or Nadar don't know yet. We do have a party to go to Halloween night with all the kiddo's from the playgroup. It should be lots of fun and then after dark we take them around the neighborhood for a little Trick or Treating. All in all it should be a good night. The Holliday decor' is making it's appearance in the department and Retail stores and I'm getting excited about it. I just LOVE the Holiday's and this year we will be driving to D.C. for Christmas so finally we will get to spend a Holiday in cool weather and I so hope it snows so that Noah can experience it. It would be wonderful to have a white Christmas.

Noahs day Oct. 12, 2006

Daddy took Noah to school today. He said as they walked into the classroom two little girls (Mia and Celina) ran up to Noah hugging and kissing him and holding his hand to the breakfast table. They pulled his seat out for him while the rest of the class was saying "HI" Noah! So cute. Noah's snack day was Monday and I made black cat cupcakes with string licorce for whiskers, m & m's for eyes and graham crackers cut into triangles for years. They were really cute. Noah started his second morning dose of Trileptal this morning. He seems to be handling this new medication very well. He's still taking Augmentin and Singular and will see his pulmonologist on the 18th. I am just learning this blog thing so hopefully it will get better as we go along.