Friday, February 24, 2012

Stuff no one taught me about Parenthood

There are a lot of things no one taught me about parenthood.
This week was one of those weeks as a parent you totally dread. Or at least I know I did.
Murphy's Law-(Hoover Edition Volume 1-
If you have no time for something to happen...something will happen to something, somebody to make sure you never over schedule again.
This week was a horribly over scheduled week, and you know what happens... Every time you have something that you've waited months for Jonathan to have a speech evaluation done  and Sarah wakes up with the scariest allergic reaction I've ever seen with my own eyes. We spent the rest of the day in an Emergency room, and thus we had to cancel Jonathan's speech eval.
Monday we had therapy , Because I am unable to be omnipresent (able to be several places at once) we had a very important genetics appointment for Thursday.
Tuesday we had more therapy for Daniel.  This time the 2nd therapist couldn't make it. She is only available there twice a week and so we couldn't reschedule.
Wednesday we were supposed to have Jonathan go to the same place that Daniel gets therapy at, but Sarah woke up with the worst allergic reaction to an unknown substance I've ever seen.  She was suffering from a tummy bug as well.  While we did everything we possibly could (bath, benadryl,lotion) with no relief. After getting Daniel off the bus, I decided that I needed some help for her. NOT knowing this area and where the kids urgent facilities are STINKS.
I have to thank my friend Brooks for being Daniel Relief while I dealt with Sarah in the ER.
Don't let the ADS fool you wait times are NOT a good indicator of great care.  We got triaged and sent to a bed in a corner and left there for 90 mins before anything was done.. Meanwhile Sarah was hating everything and everybody.  I felt badly but all she really wanted to do was scream.
 I really would have been way better off being told I did the right thing and be sent home with the  blessing and the mandate to call her pediatrician.  It would have saved me from having to manage everyone and try to get someone to pick Jonathan up from school.  The doctor didn't want to do anything other than repeat what I had already done..  The nurse there was sweet though and told me how to constructively complain..

Stuff Jonathan Taught me...
Alarm clocks...who needs that. I haven't used an  alarm clock since before Jonathan was born. Occasionally, we need one when there is something out of the ordinary or when our schedule's been disturbed.
Schedules keep mommy sane....but in the same breath being flexible to adapt to stuff works too.

You are EVERYTHING for your child...including a coach and advocate... but sometimes you need help you have no idea about.
It's never too early to have the bully talk and what to do when one is in your life.
We have plenty and we're only five.  I pulled him off the bus because of the verbal and physical abuse no one  ever saw there.  The principal of his school can do nothing about the bullying problem at her school and no amount of screaming will fix this.  By the way, the bullying started the second day of school.
He's been pushed down more times in PE and at recess than I'd like.
I'm praying against anything happening to Jonathan when one of these mean little overweight ginourmous kids jump on him and try to wrestle. He is in the terms of our genetics specialist "floppy" and over flexible.
Don't feel guilty. Because by being sad, he won't undesrtand why mommy is sad , thus making him worry.

Are there times that I feel responsible for what Jonathan has had to endure? Sure... case in point talking to the genetics specialist yesterday. He kept pointing out that I am also a carrier of what he has. so yes and they have medical records to prove that. I have to always keep in mind that as his mom KNOWING what he has to endure daily and has first hand knowledge of this I double feel for him..  We are doing everything humanly possible to get him everything he needs.

I would be willing to take Jonathan and get on a plane and fly to somewhere if we thought anyone could help figure out how to help him.  So far as we have been able to tell from different sources we are the 3rd and 4th case of this  discovered since they've been mapping the human genome.  We are one of the only cases where they've seen an issue regarding the part of the specific Chromosome.
If you happen to know of any Pediatric Children's hospitals that specialize in Developmental or Genetic medicine please let me know.

Which one is it?
The  human genome is made up of 23 pairs of Chromosomes. With thousands of variations. Each  pair has it's own special function... You get half of  mom's genetics from the egg and half from the sperm at fertilization.  But even if there are perfect sets, the process of division can cause problems.

One half of our pair on Chromosome 21 is missing some material.  This is also the smallest chromosome in the whole genome.
The Location of our Deletion is 21q22.11.
 Go ahead Google it. Even Google is CLUELESS.  genetic scientists have found that some cancers and even Alzheimers can be located there... but this is NOT US.  Trust me on this. Googling a condition before getting interpreted  results is quite scary.

Currently I also pray for every time we have to go up and down several flights of stairs to get to our apartment.  Daniel is currently in physical therapy trying to work on stairs.

Daniel will be tested for this.  However, we have to wait for the Children's hospital to  order special equipment so that they can look at the specific chromosome..
Our hope is that Daniel does NOT have this, as Andrew isn't a carrier.

As for us that is what's going on.  I hope this helps someone because I feel we're at a low point right now...and we are so ready to go up from here.

Be Blessed

Friday, January 27, 2012

Happy 1st (Belated) Birthday Sarah Grace

Sarah Grace's first Birthday Cake...
In our family on a child's first birthday we allow and encourage  the birthday person to eat and smash a small cake.  And since our grocery store had a coupon we got the smash cake free when we bought another one.

 What is this mommy. It feels funny in my fingers.
 Tastes great guys!
 Tastes like strawberry... with buttercream frosting
 Daniel wanted some frosting. He sneaked some.
 Our friend Patrick

 We ended up eating the remnants of the "smash" cake. It was amazing. Jonathan liked it as well  as everyone else.
After being wiped down and de- sweat shirted she cleaned up very nicely.  She wanted some soda

She is a very happy and amazing little girl, who last night was playing with Jonathan, like they were  taking pictures and she said: Chee(se).
You are Amazing Sarah. We Love and adore you our beautiful princess (in a house full of boys).

Love Mom and Dad

Be Blessed.
(we have some of the most amazing friends and family all over the place that we love and MISS)
HUGS to all

Scary winter Break....

Winter break brought a lot of surprises to this house.
First we found out that Jonathan becomes almost unmanageable when he is forced to be on a different routine. He is a child that thrives on routine. The downside to that is when school goes on break or we change up what we are doing as a family.
Daniel is a great kid and pretty much needs structure and boundaries.  He is a night owl and hasn't been a very nice day time kid.  Too bad we can't go to school at night... We have tried  everything from different bedtime routines, to melatonin... The latter didn't work..
About the time school was getting ready to get out for the break, I noticed that Jonathan was having a runny nose. Nothing seemed out of the ordinary with that as I just figured there was some type of allergy going on with all the crazy weather we have been having.
A few days before Christmas as I was sitting, browsing the internet, after I had put the kids down to bed, I heard coughing, LOTS of coughing. Coughing that was not stopping. To me in our house that's NEVER a good thing.  I got up and grabbed the mask and the inhaler and ran toward the back of the apartment.
I was thinking it was Sarah for some reason, because she had been having cold symptoms. But when I opened the door  to check, alas it was not her.  When I opened the other door into the boys room... I walked in to see a panicked looking Daniel who was clutching his chest literally gasping for breath.  At this point it was after 10 pm and I just grabbed him and immediately gave him a breathing treatment.
3 minutes later as I waited to see if this treatment worked. It was not.  I told Andrew that I was going  to take Daniel to the Emergency room.  I then grabbed him, and our bag and went to the ER.  When we  arrived he sounded like he was gasping for air but his blood  oxygen level was 97%..  Diagnosis: an Ear infection, and croup.  The next day our pediatrician added Strep throat to this.  Antibiotics cleared all of that up.

Christmas Day:
Christmas Day went okay, if you factor in that both Daniel and Sarah  were feeling a bit under the  weather.
We had fun, we opened presents, we went to church(through the miracle of live streaming) ate some yummy food.
Later on as we are putting the kids in their beds I notice that while I was holding Sarah, she was hot. I mean she was REALLY HOT. I took her temperature and it read 105.2. I thought it had mis did something so I tried a different thermometer. It still read the same temperature on a new thermometer..  I also was noticing that she had some crazy labored breathing and was retracting. (pulling in at her rib cage)
So I grabbed our stuff, bundled her up and went to the same ER... Funny thing was we got the same Doctor and the same nurse.  Diagnosis: Broncholitis and a double ear infection.  Couple of days later Pediatrician diagnosed the Broncholits as RSV.
So Sarah and Daniel were sick for Christmas through to the next week.  Our close friends had been traveling to see their family for Christmas all came back having Strep throat.  We were having to postpone our Birthday party for Sarah.  Besides being  sick on your birthday sucks. Having no one to celebrate it with, sucks even worse..
By the time School started back we were all celebrating because Jonathan was getting on mommy's last nerve  school was starting. Everyone was getting better....

We rescheduled the party like 3 times for various reasons...but we settled on a date and a place and did it. we had  the party at Golden Corral (because we know parties with young kids get messsy)

Next post: Pictures

Sunday, December 25, 2011

Merry Christmas 2011

Merry Christmas to You from our Family




Saturday, December 24, 2011

Stonegate Elementary Kindergarten Christmas Carol program-2011



This was Jonathan's Class performance for his Kindergarten class. We think he was the cutest reindeer of all.  Their class starts at 15:30 for those of you that just want to see Jonathan.
Of course we'd love to wish you a Merry Christmas.
Also not to forget The reason for this season. Jesus Christ.
Merry Christmas and next post will be Sarah's 1st Birthday.

Here is the Link to the Container Store's blog: HERE
We so LOVE The Container Store. We even love it more since Nov. 18th , when Andrew started working in their distribution center.
There have been many early mornings and many sleepy kids in the back seat taking Andrew to work...but so far it's been worth it.

Be blessed and Merry Christmas.



Thursday, November 10, 2011

Raising Awareness... HOW

I've gotten to the point in life...
Where some thing that used to be important to me, aren't that important now.
Okay now before I get hate comments on here let me clarify.
I care a lot about a couple of causes. The March of Dimes, and anything having to do with Cancer Research (esp. Kids Cancer).
This morning (Thursday) I was reading my facebook feed, like I normally do, I saw something that alarmed me.
A friend of our family posted that she was moving to Costa Rica for 12 months. I was like, are we still watching their kids tomorrow night? Are they all leaving...etc...
The truth was... It was one of those cryptic messages that is supposed to raise awareness for cancer; although I have no idea how anyone  can figure out the formula to how they got the words.  The first words of the email is that men are to be excluded from this....
This is always trouble for one by excluding anyone .Two... it doesn't raise awareness or money for a specific cause.outright (unless you ask someone who had the formula)
Like a friend of mine said. "you might as well flush a toilet"- She made a video I will post at the bottom...
For the record...She has her own blog, and I like it. this was on hers. This is HERS.

If you are into raising money for a cause:
Go find the Cause and support it...(click on the highlighted and it will take you there)
American Cancer Society- Relay for life- Personal because of: Andrew's Grandma(pancreatic cancer 2001)
Tracy(2006) Larry(2009) Victoria-Age 6 (2009) and Fred(2011)

Lukemia & Lymphoma Society-(for Christy)
CureSearch-Children's Cancer Research

March for Babies-March of Dimes- Prematurity and Birth Defect.-This one is personal and in a few days like I have for the last two years I am writing my blog about our Nicu journey and how we were helped. I am writing as a part of BloggersUnite for Prematurity awareness day.

Be very blessed and be a blessing to someone else!

Friday, October 21, 2011

What would you SAY...

Okay now that I've got a song going through your head...Or at least now there's one in mine.
It got me thinking.
October is Pregnancy and infancy loss awareness month. Most people are aware of October also being Breast Cancer awareness month.
In fact I've seen it on  the news and even say a horrible NFL game where I needed sunglasses because the pink was day-glow.(yeah I know I just totally bunny trailed but now that you're aware I will continue)
Okay now my question. What would you really say so someone who just experienced a loss.
I'm going to list a few pointers I use. This totally excludes pregnancy loss because I've experienced this one twice.
1. Try just being honest and say you're sorry and how you don't know what to say.
This is so much better than saying something you don't really know or will come across the wrong way.
2. Place yourself in the other person's shoes...and walk a few miles in them.
What would you want someone to say or do for you.
3. If you feel like you want or need to do something for them in this time of trauma/loss, be very specific.
If you say something like, If you ever need anything please let me know.  Okay one problem, we've all heard this and it's too open ended.
Imagine going through a time in which your whole personal universe falls apart. It's overwhelming. nothing makes sense. This trauma wasn't supposed to happen., now you have to deal with not only this loss but everybody else.
I remember certain things that really helped me when my first son Jonathan was born and the NICU stay that followed. One of the most meaningful things someone did for me was...Mow my lawn. or Bring me food.
This friend of ours actually asked if he could come over and mow our grass.

4. Don't avoid someone because you don't know what to say. Just say something. If this person lost a loved one and you have personal memories of them...talk  about this. Trust me it helps when other people remember a friend. writing down the memories is even better.
Silence can sometimes be deafening. It's okay to cry about it.

Pregnancy loss(this may trigger-those who've had this happen)



I've experienced two miscarriages. The first one was in January 2005 and the second was August 31,2007(labor day Friday). Both of these pregnancies were very wanted and the babies that were in my womb from conception were both precious and loved.
Having had just gone through several years of infertility and waiting, It was truly the most joyful thing to find out that finally we were pregnant.  A few weeks later and after an ultrasound we discover our babies had died.(both times)
I'll spare you all the details only to say. It stinks. I'm sad and there is such a stigma on this that I cannot talk about my loved ones.
I've heard even  really great friends tell me the most crazy and hurtful things that meant well.
"Maybe it just wasn't meant to be" or "Don't be sad and don't mourn this baby".
I even had a pastor friend that I respected tell me that I had an abortion. I had no respect for this person later by the way, and the fact of the matter was that my baby had passed away at 7 weeks and a month had passed.   My body never got the memo to let go. I saw that ultrasound with no heart beating..and continued to see that horrible yet beautiful picture every time I closed by eyes for a while.
This person treated me as though I had butchered my baby.  Incomprehensible if  I catch someone saying it to one of my friends or me, I will be having words with you.

The morning we said goodbye a really well known friend of mine called me and gave me some really terrific words of comfort(from experience)
My baby was in heaven with Jesus and that I would be able to see him when it was my time, and that no matter what I was and always would be his mom.

I would through this experience gain some things that were unexpected. I gained a new level of compassion for people experiencing this. Maybe it's empathy..I really don't know what to call it.
I also gained some of the most wonderful,caring and loving friends I never thought I would ever meet. People from all walks of life, beliefs etc.
One of the best things I ever heard someone say was "i'm So sorry for your loss" I'm here with you and for you. If you need to cry go ahead. Screaming is okay too."
Okay now that I have tears in my eyes...
Pregnancy loss is more about mourning the future... What would he/she have looked like etc.

If you've never experienced anything like that: Good for you. I pray and hope you never do.
Be honest and tell the person you don't know what to say and leave it at that.
Let the mom or dad take the lead in whether or not they want to do something.

Case in point (and I hope this friend doesn't get offended because I love her and her family HUGS and Kisses to C)

When I miscarried Samuel at what should have been 11 weeks...She was I think 34 weeks pregnant.
We'd gone through most of her pregnancy together as really close friends. We talked a lot. She was in fact the first person I called when I got this horrible news.

The timing on this loss was so Horrible not only for my family, but for her as well. She was in a period of transition that was anticipated to be JOYful.   The whole thing was just awkward and after the initial loss and the memorial we had..we kind of backed off... Because our time of LOSS was incredibly upsetting...she didn't know how to feel or say. Well of course she went on and had her baby. I had asked her to call me and talk to me through that because I demanded she did. I told her if she kept this from me I'd be even more upset. She  shared the whole thing with me and even called me right after she delivered her own baby in the hospital by herself (long story short, her delivery was super fast that no doctors or nurses were there to catch the baby. The baby came out and landed on the bed).
We drifted apart and only on occasion would call each other. I felt I lost a friend. She avoided me like the plague for a while.  We did reconcile and God does  wonderful things through that. God only knows the reasons why things happen. It's impossible for me to see anything past my circumstances sometimes.. We'll be friends always although it will be different.

Although I didn't die, some people expected me to stay away from the activities that brought me joy and light to my dark valley... why do you expect me to crawl in a freaking hole and never come out...
Yes I have those days where I want to stay in bed or go sit on my porch. I still think about those babies. A LOT.

It's a MYTH that just because you have other children, that losing a baby by miscarriage is any less painful.
In fact it's quite the opposite.  Every year on someone's birthday the question goes through my head about what one of our babies would have looked like.  Having a child that's living sometimes does trigger that response,although I have learned to deal with the pain of that.
This same truth applies also to infertility.

Someday my children will be told about their siblings that are in heaven waiting on us all.  We are waiting until they have more understanding of life and death to tell them this.

Until then Every October 15th we light candles to remember those babies.  We also light candles Jan 28th... Samuel will be 7 years this next January.

Until our children can grasp the concept of life and death, we are waiting to tell them about our other babies.

Some of this I have to give credit where credit is due. I would not be where I am today without the friendship of some ladies I met on the internet. I also have met others with these experiences locally and the thread among ourselves is made common by love and loss.
I ultimately have to give the honor and credit to God(my creator) and also someone who I married nearly 14 years ago.
Having said this...I've been greatly comforted, and find myself offering the same support that was given to me.
Until next time go and be blessed (to be a blessing)