Moving and other fun activities.

Okay so the last two weeks have been really, really busy at our house.
We have had all the doctors appointments that we normally have at this time of year. We are so glad that we got the chance to see all of our doctors/Specialists.

We went to the Developmental Pediatrician for Jonathan (as you read in my last post)
We went to The pediatrician...In fact we've been twice. Once for a recheck for Daniel and one for Sarah who got the same respiratory bug we all got.
I went to see both my OB/GYN and my Family Medicine doc.- I had a serious bout of Bronchitis and it brought with it several days of having a blazing fever of 104.
I have weaned off of medication temporarily but will probably happily go back on some when I find me a new doctor.
We went and had a visit with Jonathan's genetics doctor...
God I puffy heart that guy.  Sorry to say we totally dreaded the idea of going and seeing him in the beginning as well. Best experience with Jonathan with a specialist (prior to going to developmental peds).
As a side note on the genetics: I will never EVER google un reviewed results ever again. We were thinking Jonathan was dying and had cancer... and were terrified something was about to turn ugly. God was probably definitely giggling at me because it turned out totally stellar. He's fine.

We saw Jonathan's eye doctor...His eyes are stable although we have to wait for his eyes to get worse before we can do anything more.  They were slightly worse, but not enough to do anything but put a patch over one of his eyes.  Forgot which eye I have to do that to so being a human, I will have to call back and fight my way through voice mail.

Andrew- Has gone to both a sleep specialist and his internal medicine doctor.  He now sleeps with a cpap and is totally the quietest sleeper in the house. A CPAP is Continuous Positive Airway Pressure.  It shoots a constant flow of air into his nose.   The machine itself is silent. The chin strap he wears to help keep his mouth closed... Is by far the sexiest thing.  and by sexy I mean this...If it helps him get the restful sleep he needs... then that is the sexiest thing ever. I can sleep in peace knowing everyone is sleeping well.

I am going to leave with a little bit about loading a trailer.  Most of the stuff in my home can be put into the back of a trailer.  Most of the big stuff was absolutely the heaviest stuff ever. We will be hiring a couple of people for a couple of hours (for money and or food/beverages). My back hurts now and hopefully next week our chiropractor can move things back into place.

Be Blesed: Next entry will be about actually leaving and our going away party.
Hopefully Sarah and I will make it out to the DFW area.  We haven't exactly even penciled in how we're getting out there.   This is taking all of my patience and faith... I am a planner and the more I know ahead of time, the better and calmer I am.

Much LOVE

Big Bad Wolf: Misunderstood?

We went to the Developmental pediatrician yesterday for our appointment for Jonathan. Jonathan has been being seen by a developmental pediatrician because he has language, gross motor, fine motor and cognitive delays in his development.  Last summer we did some genetic testing and discovered he has a deletion on the 21st chromosome.  This is so rare, that every time someone gets discovered to have this, all our information about symptoms, development, etc. gets put into a world wide database..
The visit went rather well and it seems that medication for Jonathan's hyper-ness  is working although we just reached a level. Could it be dialed in a little better? Yes, and it will as soon as our move to Euless is completed, and we get us a new pediatrician.

The pediatrician we see only sees kids with developmental or behavior issues. 
I am very glad we got to see the developmental pediatrician.
When I was told by the genetics doctor that we needed to see this guy, my gut reaction was that he was the big bad wolf.
This was the LAST thing I wanted for my child. I didn't need another professional or another human being for that matter, pointing at my child and putting another label on him.
Jonathan is five years old, and has had quite a life of doctors and specialists...I'd prefer at this point to try and limit the trauma from the medical community. He gets traumatized by all the poking and really HATES blood work.
I went on a facebook page a couple of my friends had been on.  It's called Shut up About Your Perfect Kid. It's a community of people who are either parents of special kids or someone who works with them or just loves one.
This page is actually created by the authors of a book of the same name.  Although I haven't read this book yet (shrugs and hangs my head in shame) and I will... Trust me it's in my amazon shopping cart right now.
I went there with questions, and got not only an answer, but also a ton of encouragement and support.
Someone suggested that I take my son to see what they said and not to worry, these aren't finger pointers.

I was really pregnant at the time with Sarah and had just spent a week in the hospital in November. I drove slightly outside the 40 minute circle of late pregnancy. I actually drove 40 miles.
I was not really sure what to expect other than feeling like I had completed  an application to the ministry school I graduated from AGAIN. There were so many steps in getting him seen there, that made completing mortgage paperwork seem like it was EASY.
When we came to the appointment and finally met the doctor I was so shocked. He was so easy to talk to just because of his manner and not just because he looked like a friend of ours named Brooks.
 He answered every question I had, that he could answer. Gave me names of books I could read, and educated me on Individual Education Plans (or more commonly know as an IEP).
He was NOT the Big Bad Wolf that I thought he would be. In fact he became more of a coach, a teacher, and a cheer leader.
Which leads me to ask: What things are you afraid of?
When you really look that unknown thing down, is it realistic to be afraid of it or we just afraid of too much?
Just as a matter of fact, there are real things that we should be afraid of;just to keep us safe.I am not trying to reduce that reality, at all. 
I just checked off another thing I was afraid of off our list and it's an exciting experience.

Be Blessed and go conquer your giants!

Riverbanks Zoo & Edventure- Columbia SC

This weekend marked the ending of Pre-K for Jonathan. Since there was no graduation ceremony, we decided to use our various coupons we had gathered for Columbia, South Carolina to mark this milestone.  The next milestone for Jonathan will be the first day of Kindergarden, which will be in the Hurst EulessBedford School (HEB)district after we move next month to Euless, Texas.

Coupons/gift cards used on this Trip:
1 free nights stay at Embassy Suites-Graystone (purchased for a song at a March of Dimes Silent auction)
4 General admission passes to Riverbanks Zoo and Gardens (also purchased for a song at a silent auction)
1-$50 gift card to Di Prados-as a part of the zoo package that was at the silent auction.
4 passes to Edventure- This was a Groupon

Riverbanks Zoo and Garden-
This was and always has been a favorite destination of our family. I give it 2 thumbs up.
Everything was very accessible with our stroller. Even the Garden tram had a ramp.

 EdVenture- For ages 4 and up 2 thumbs up. For ages 3 and Under Two thumbs down.

Okay My kids ages: 5 years old, Nearly 3 years old and 5 months.
We had several problems with this place as soo as we walked in the place. This place was not stroller friendly, although there was an elevator.
Many of their doorways were either too narrow or cut in half by building columns. I couldn't get through some of the stuff and the other part I could I felt as though I was blocking the flow of traffic.
For a museum this is bad.
When we went to turn in our groupon that we had purchased, they tried to sell us passes to their butterfly exhibit... Only thing was they did not mention we could not take our stroller, and when confronted about it stated it was a USDA rule... However, they were the ones who sold us the ticket KNOWING we had a stroller.. (scratches head and shrugs). Not to worry though. Andrew took Jonathan although the ticket was originally purchased for me. We were able to see about half of their exhibits
The Three and under set- Big thumbs down. They had one single room in the place cordoned off that had foamy toys and like a play stove and a play ship.  They also had a soft area for babies that was out of line sight wise,obviously having both kids in both places wasn't going to do. We ditched the infant area quickly.
I will give them a positive for trying though. They stuck a family bathroom in there as well although it was really tight to get in because of another building column.  This whole place was poorly ventilated and when we were there it was HOT.
Since we have developmental and Language delays this place was a challenge although still enjoyable.
If I were to say anything to another parent with a child with any kind of disability about this place... Go when your your child reaches a developmental equivalent of 42 months.(that's nearly 4). I say this because this is where Jonathan is in some things and he's just starting to enjoy stuff like this.

Di Pratos- Lovely Brunch- Deli style. Order at the counter. Great food. Very reasonable.  Great selection for kids menu. Awesome quality for the price.

 It was this week end I discovered I really want to begin not writing about our  adventures, but also some of the destinations; because sometimes as a special needs parent I am experiencing places differently than other people. We all need to know. If we had known this before hand We would have either not have gone OR we would have taken the Under three kids, whom I call the "Littles" out to a park or gone on to the hotel.

 Sarah in the play area. she enjoyed this. although we do this at home.

That was pretty much our trip. Hope you enjoyed this.
Until next time.
Be Blessed

Last day of Pre-K... Thoughts of gratitude

Before I start to  here to thank a lot of people here, I will give you a point of reference so you can sort of get how far Mr. Jonathan (aka Mr. J).

When He turned 3...We were just beginning to teach him how to go up and down stairs... He fell down ALOT. Which scared both Andrew and myself. 
He has a lot of issues with Balance... He would fall down just out of nowhere.  He got that honest... Right Dad? Andrew STILL does this, and I'm ashamed to say I think it's funny.
OKAY I am so bad.

Balance is very important for walking and running...heck even standing up. Both Jonathan and myself have to really work at it. It's part of the rare genetic disorder we both share.

He is falling down way less now.

When He started pre-k when he was 3 years old. He  was basically non verbal. He had a vocabulary of about 20 words. He would scream a lot and have temper tantrums our of his frustration.
It was sad and frustrating  for us as well. I am so sure I've written about it here before.
Now that he's 5, he can tell you some stories... and although some of his words STILL don't make sense he can tell you a story. He has had some interesting dreams.

Baby You've come a LOOONG way!

 He does a lot of other stuff now like write his name.  He loves to  draw.
He LOVES the computer... and his favorite game right now is Monopoly(which is on facebook)

This morning was bittersweet for me because without this school, he would not be talking or running around and being the smart little boy I always knew he was.
The only thing is my sweet little boy; you know the one we brought home from the nicu on oxygen, is growing up.
Several people to thank here.

First the folks from Easter Seals Early intervention. You were my sanity. You made life with Jonathan a little easier to deal with.
Thank you to the Exceptional Child dept. at the Rock Hill School District...
Especially Miss Kristen, and the other therapists who worked with him... Thanks for always answering our questions.
Special, special thanks to Mrs. Ard and Mrs. Puckett. Without you pouring your love into Jonathan and  the other kids, we wouldn't have seen as much progress. Don't ever think that will ever go unnoticed.
You both deserve teachers of the year! Thanks for also teaching us about IEP's.
That and oh yes, I will never ever be mad at the decision to move him to the other class. We were all working towards this as a goal of his.

To my dear Antioch family, who've all Put your arms around my son, at one time or another in Sunday school, I credit you guys and the prayers you've prayed for him. Our God is bigger.

Getting Ready...To move our nest

This is a Frequently Asked Question Blog entry

Where you ask are we moving?

Euless,TX

Why would we possibly want to move there.  Look at a map of the DFW area, and tell me WHY NOT.
There are over 400 Distribution Centers in the area, which is SUPER for Andrew.

Do we have family there?  It totally depends on your definition of family. We have  close friends who are more family to us than our own family.
As for blood  related Kin...They live elsewhere.

Gonna miss us like something Terrible? We have just entered the world of Skype. We can talk to  anyone, anywhere and have it feel like you are next door.

How do I feel about this...
It's so mixed right now it's totally not funny.. After spending the last 13 years here in the Carolinas, it has become home. My children were born in Charlotte. My dearest friends that I have made are here.
Most of my support system is  here.
Our pediatrician, Dr. S, whom we adore is here.  We kind of joked about making him move with us.
We have so many memories. Many great memories, some okay memories, and some we'd rather learned from and left it there in the past.

I am positive though that we can find us a new pediatrician and etc.
Friends however to me are forever and I want each and every one of my local friends to know how much they mean to me.


Jennifer- I Love you girl. May all of your heart's desires be fulfilled! I am praying for you. You are so amazing and your heart is huge. Thank you so much for sharing your journeys with me as much as I shared mine with you. Nothing will ever be enough to repay you.

Katie K.- From the first time I met you...You were a blessing.Your heart for others is beautiful. I am praying for great things for your family. Thank you also for sharing your journey with us. oh and by the way you know friendship never ends...Neither do our prayers. You are an amazing woman and mother.

Barbara P.- Did I mention that we LOVE you... Thank you for ultimate blessings and encouragement.  I remember when we were trying to conceive and frustrated and you told me to call your doctor up. We did and I have 2 of our 3 kids here out of that office. Love and laughter is a gift...
Your wedding was also a great gift. I do not know how but God just decided to show up.I will never forget the priceless look of awe on Daniel's face as you got ready to go through double doors in the chapel.

There are so many more friends I will call or facebook people I would like to speak to...

For now my amazing friends, be richly blessed.

March for Babies 2011- in pictures

one of these is from a couple of weeks ago

"March for babies 2011"

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Revelations of a special mommy

Revelations of an imperfect Mommy

About a week ago as I was hanging out with our family at a place that is known for their potatoes ;) something happened that at the time made my eyes roll. Later I had a sweet revelation that made me appreciate what I have.
What happened: I was having dinner with the family just minding my own beeswax when I hear this other mom about 20 feet away talking on  a cell phone (quite loudly). She was what I would call bragging on her kid and talking about other kids on her child's soccer team...sometimes not in a good way.
This made me just sick to my stomach and roll my eyes. Good grief. Is your life that dull and boring that you feel you need to live through other people to get some excitement.... Then I had an epiphany, I will NEVER be that Soccer,PTA, get decked out to pick up my kid at school kind of mom.
Now as a disclaimer if my kids by some miracle want to participate in sports...I am there and cheering for them. I know how hard Jonathan has been working on everything so I will be extra happy no matter what he chooses to do.

I have currently one child who has special needs and I'll be the first to tell you if you don't already know that sometimes I get myself in a pickle by comparing my child to another child. The other two kids so far haven't shown any signs of a problem although speech development will be an issue for Daniel.
I believe a lot of parents get into comparing their kids even if it's their siblings. I'm so guilty of this.I am even more guilty when it's other people's kids.

Sometimes it's just great to step back and fully appreciate just how far we've all come.
Right before I became a mom it mattered to me what people thought of me. I wanted people to like me. I tried to please everyone. I even kind of lived through what my husband did.
After I had Jonathan and went through the trauma of the nicu, and the experience of home oxygen, I realized something.
 I don't really have to please everyone to be thought of well. I can say no. I don't have to be at every social event everyone has.
my kids are on their own journey, and I just happen to be with them, or is it vice-versa. I cannot live through them or I will miss my own life and the lives of my kids.
I sometimes only have enough time and energy for my kids and their needs, that if I'm lucky MAYBE I can take a shower. I do however, have time if a friend needs something and can have patience knowing I have young kids that only are slightly fluent in english. I am not a human translator decoder. Please don't treat me like one by asking me to translate something one of my kids said. I only know things about fifty percent of the time....
Case in point: The other day Jonathan was going on and on talking about "circle ice". It took us all day and 3 of us to figure out that he was talking about the hail that he had seen while we were on our way to attend a memorial of a dear friend of ours Fred.  The hail was nearly dime sized.
I know I can't please  everyone. Not even myself sometimes, so what's up with me wanting to please everyone else?
My prayer is for everyone to enjoy what they have in front of them to do. Find something to be passionate about and do that. Find your purpose.

A dear friend of ours, who had battled cancer for several years, passed away last week. It was really not that hard telling Jonathan that Fred had passed away... We told him that Fred went to live with Jesus and that he wasn't sick anymore and he wasn't coming back.. That was it and he had no more questions and was okay with that. we told him that we were sad and that was okay.

Fred was passionate about what his wife Darlene is doing for Urban communities. He was a great example to others of how to be a great man and husband. We will miss him...but we know we will see him again when out time comes to go to heaven.
Currently since having Sarah, I have been experiencing some post-partum depression. It's not that I'm not the luckiest and most blessed person on the face of the planet. I am. My kids are pretty awesome even on their worst days.
It's not that I'm totally self-focused...Most days I feel like the sun with multiple planets rotating around me.
While one kid may be sleeping, another one may want to eat, while another one may need help on the potty.
I'm super happy about them all but ecstatic about the latter. Jonathan is semi day trained. semi as in he can poop on the toddler potty and stand up to pee with the regular potty. Pooping on the regular potty not yet. But at least it's major progress. I'm always happy about that.
Jonathan transitioned to a regular class on Valentines day  and seems to be doing well. The transition to the really early mornings NOT SO MUCH.
Maybe this thing too, shall pass with time...Only time shall tell.
Until next time be blessed and enjoy the journey.
We have our challenges, BUT we persevere and learn from it.