Serving #151

this picture has nothing to do with my post I just thought it was to pretty not to share :) Proud Mom or What...LOL


I cannot believe that March is about over!!! April, May and June is the best time of yr it is always warm and sunny and tons of beautiful flowers. I think that I am so ready for spring finally it is time to get out of the house. After Basketball that is, although my bracket is just a mess…Jumping on the local wagon…GO HOYAS!!!!!!!

Tuesday I ordered this cool carrier for Tatum…. Gretchen turned me on to it, the carrier is called the ERGO…I am psyched, I ‘m a huge fan of the carriers I even have one special for the pool. LOL...Hopefully this thing is going to be the carrier of all carriers...it goes up to 60LBS...I even saw some pictures of pretty grown kids in it... I hope Emma does not get any ideas...she is heavy!!!

ANYWAY.....

With the new weather comes the new acceptance…. I realize I celebrated my 1yr mark a few weeks back (end of the month is way to busy) but this morning it seems to still be on my mind…From last yr to now I have certainly come along way, although I do not think that I was ever really a huge complainer about the hand we were dealt but I did and do still complain.
Believe me I still have up and down and very bad days but they are really few and far between Well from what I hear it gets better from this point…until school then I would think it gets a bit hard again…Kind of ironic how it was 1yr ago today that I found out about WS and this morning I decided (only after the 5 noise picking email from the same person) that I can not longer subscribe to the WSA list serve (to find out more about list see Nancy’s blog).

It has taken a yr but in that time I have found a wonderful new group of WS mommies as close as central PA or whatever the part is closest to MD and as far away as Australia and Hungary…I can not wait to visit everyone just as soon as we win the lottery…Funny how most of these ladies live in a state or country that I have never been too, and I have been to a bunch at least I always though I had.

So today I am tossing pretend Chips out for the one Yr mark…Nancy, Kerry, Ana, Kelly, Kim& Laura, Heather and everyone else coming up on that first yr of knowing…We Made It!!!! For those of you past this point I think your my Idol...not a Sanjaya type idol but a cool one ;)

I am a much happier and whole person this yr. I think that the girls are just as happy as could be we have made some tough choices but it finally seems like it is all clicking. I mean really is this a happy family or what HAHAHA.....

This is Post 151..to think I told Aspen that I would have nothing to blog about.....


I have alot going on tomorrow so have a nice weekend all ;) I get to meet GRAN Z!!!!!!!!!!!!!!!!!!!!!!

Meet Tinkerbell

This weekend Chris completed his second of two racing schools. You have to complete two weekends in order to race. Well as of Sunday we are officially ready to race. So far he only has two race weekends planned but that is fine with me Labor Day weekend is going to be a blast...

I took the girls up to see Chris turn laps on the track Sunday afternoon, Emma has been to the race track alot but this was Tatum's first trip. Tatum was actually very good as long as I was holding her...I was thinking she was going to hate the noise but it did not seem to phase her. Good thing because she is going to be up there watching her day more often, always a easier trip when everyone is happy.

While waiting for Chris to go back out on the track for his last laps, we were all just hanging out around his race car ( 91 CRX). Chris had some of his buddies helping him and I had come with the girls and Chris' Mom and Walt, so needless to say Emma had every one's attention when she announced that Daddy's race car was named Tinkerbell.

She was so proud and happy about the name that I think it is going to stick...We even wrote it on the back of the car in the dust. Emma shows that to anyone that she can get out to the garage with her...It is very sweet...

Now everyone knows what Chris has been working on with such dedication all winter long...I know the neighbors must have been wondering...he was in the garage with a heater until 2:30 sometimes...

So without further Ado meet Tinkerbell....

PERFECT EXAMPLE

In case anyone was wondering what the issue with Tatum's eye's are the below pictures are perfect examples. You can tell in the pictures that her eyes are crossed but it you look you can see that in one pic she is crossing one eye and the other pictures she is crossing the other eye...That's my girl always keeping us on our toes....

While we are at work...

Once the weather gets nice it makes it so hard to go to work. All I want to do is play outside with my kids…but as soon as we come back in I am ready to go to work again LOL, I guess that is kind of bad. Can you blame me it is so nice and quiet at work and best of all there is never a 38lb growth hooked on to me, 58 if you want to add the growths together. They are awful cute growths though...:)

Anyway the girls are just having so much fun at home. They have taken numerous trips to the library, we have one in our neighborhood, food store, and Emma’s swimming class is now three weeks in. Tatum has been doing her OT and PT and now next week we are starting education…around here they do education before speech.

I leave my camera home a lot so Pim and the girls can take pictures…While checking out what was on it last night I found the best pictures and you can actually see Tate’s new chomppers…so cute!!! I am glad that Emma loves Tatum so much, now if I could only teach her that she is not a doll. HA

you can actually see her teeth better in this picture but it was not as cute HEHE...she bites now ouch, look out Emma Tate has a weapon HA HA. got to love the snotty dry face too eh...

The Grass is Always Greener

I had one of those Grass is Always Greener days...

Ya know the kind where you work all day insurance company calls in the middle of it and all you can do is laugh...Yeah that was the day. I left work with this feeling in the pit of my stomach, over the next bunch of years we are going to spend alot of money on health care. I guess you just make due and make it work but man that was surly not planned on...Oh well I guess nothing is...It kills me that if you make alot of money all is good but if you are middle class like MOST of America well then whatever, you work hard you can afford it...yeah right!

This is the slowest my business has been since I started 5yrs ago. I know we are busier then most companies in the mortgage business and I know you just have to stick it out but really....I am going to have to vent some, ya know. yeah I can handle it but I hate not being able to do everything I want.

At this point I can only hope a breath of fresh air comes with the next presidential election, that is if there is any fresh air left!

I hope I do not sound like some ungrateful person because that is not my point at all; I am just frustrated.

Celebrating The Irish Heart

This past weekend was the 21st Annual Heart Ball. This is a fund- raiser for the American Heart Association that takes place in the town I grew up in. Chris and I have attended this event with My Dad in the past but not for a while now. My Dad was the Chairman this year so we all trucked over to Delaware to attend the Ball. My Dad had named Tatum his official Co-chair in the program so he wanted the girls to come for a bit. We all got dressed up and went to the Chairman’s reception this went from 6-8. Tatum went on stage with my Dad when he went up to talk and he mention how the AHA was even a more special cause now that we all have Tatum in our lives. I think everyone there could just take one look at Tatum and see how special she is, and if they did not notice it right off the bat Tatum would flash one of her joker smiles and it was all over then. The reception ended around 8 so Chris and I took the girls back to my Mom’s house so we could have a nice evening without them.

My sister and her husband had a hotel room so that was nice to have a place to escape to and get a free drink…after the reception it was a cash bar…. good think my sister and I visited the martini bar plenty before they closed the reception…Gotta love all those new Absolute flavors!!!! Anyway when we got back to the hotel we found Geoff in the hotel room watching Basketball (not to worry we have recovered from the Terp Choke and the destruction of my bracket…) another good reason to have a room. Chris stayed with Geoff while Julie and I went to look for Heather and Jamie, friends that also came with us, and find the bar. Funny we found everyone at the same place and shortly after we got our drinks we found our husbands.

The hotel look beautiful all set up for the function. There was a silent auction gambling tables and lots of fun food. For a donation you could get a storefront. My dad had the “Three Princesses Pub” equip with a very cute sign show all the princesses, names, funny how the sign was missing mine and Julie’s name, I thought we were the princess’ guess we must be queen’s now LOL.

It was a very fun evening, I saw people that I have not seen in years that is always fun and I got to hang out with Heather and Jamie whom we never see and Julie and Geoff whom we never really get to party with. I do think that it may be illegal to look as good has heather does 5m preg but I am sure I would think different if I ever looked that good preg or not, LOL.

Sunday we got up and had brunch at my Dad’s with more friends that live in town. It had been over a year since I had seen Liz, Scott and their boys. Liz also grew up with my sister and I and Scott well he’s been around forever too. They dated all through high school. There boys are adorable and Emma had a blast with them.

It was a fun and tiring weekend …very fast paced, and we re so not good at fast pace…

But…it did not end there we got home at 3:30, as we pulled up Emma got mad because it was her house and not Grammy’s but recovered quickly when she found out we were still going to Aunt Angie’s house for Ma’s b-day…After dinner and cake we finally made it home, about 8ish. I fell asleep putting Emma to bed and that is all I remember now I am at work…. whirlwind I must say…

So far so Good

I know it means nothing but I am doing good so far :O)

I even picked the big Upset.... YEP DUKE!!!!!!!!!! HAHAHA

Break out the Brackets

I love March and a big part of that is college basketball...

Maybe this came from going to college in NC (ELON) and living in Chapel Hill for a while afterwards.
The place to be in March is Chapel Hill now those cats are some serious Duke hating basketball fans...It's great!!!!
Any way for the next few weeks we have to live breath and eat basketball, The better the Terps do the better it is for me. They better win today, and in a perfect world Duke loses today.
I am a bit nervous we have a close game at the half!

Well keep your fingers crossed for me I have three brackets in the pool at wk... Don't worry I am smart enough to not have MD winning it all...I have UNC, Kansas, and Georgetown asmy winners. GO TERPS :)

Like I Said

Pictures....


I really think that Tatum was yelling at Emma in the bath tube, and for good reason Emma rough houses with her all the time. This is good and bad I guess but mostly good they are bonding, right. It is really cute and Tatum does seem to enjoy it, she and Emma both laugh between screams. We have the funniest video of it but if I put it up Emma would really kill me someday.

I tell ya I really think that Emma is the one we have to worry about. She is going to turn 4 in 3m., I have no idea where all the time has gone or my baby for that matter. As she ran around this weekend playing I noticed just how grown-up she has become, even posing for pictures. At one point during the day Chris came out of the garage to find Emma on top of her playhouse. Not understanding why this didn't phase, me he told her to get down because she was going to fall. I had to tell Chris to leave her alone, she was not doing anything different then he did when he was her age. He agreed and just told her not to fall. The we both just laughed and shook our heads.
It was nice that we have finally made it to a point where we can actually enjoy both girls together. Tatum even hung out in the yard some. It is so nice to not have that two babies feeling. One baby and a sassy toddler with attitude is a little bit better, most of the time anyway. Yesterday while getting ready for work I even noticed that Tatum now watches TV...She and Emma both were entranced by good ol' Sesame Street. Some things never change.

Emma is all about helping out with everything these days, it is actually nice. It's also great because I can pretty much always understand her, sometimes I have to translate for Chris but since she never stops talking her communication skills have majorly improved. just a heads up do not say anything in front of her that you do not want repeated. CHATTY CHATTY CHATTY....both of them, I just do not know where they get this from..... LOL
I found a horse play pic...Awe if only you could see how they ended up like that..... even in the tube she is rough you can never take your eyes off them. I told you she yelled at Emma with good reason...HAHAHA

Has it been a yr already???

It is simply amazing to me how fast things change. I was just one yr. ago this month that we discovered Tatum not only had congenital heart disease but also something called Williams Syndrome. I remember driving home from the Dr.’s office calling my friend Nichole so she could goggle Williams Syndrome for me. I just listened as she read symptoms some she had and some she didn’t. Once I got home and had the chance to look for myself I just knew that was it. Chris and I spent the entire weekend telling each other there was nothing wrong and Tatum was totally fine. Well Monday morning I got a call from Dr. Lindsay confirming the most awful thing ever, Tatum indeed did have WS.

I called Chris in tears the second I hung up the phone. Being the good guy that he is he packed up his work for the day and headed home to drink with me…Just kidding he came home because I was upset.

I moved quickly from that point on, the first week I found out I made a Dr. apt with genetics and called the infant and toddler program to get the ball rolling. By the time I went back to work the second week in April we had everything in place. Now maintaining that crazy schedule was the part I had no idea how to swing.
Like everything in life it just seems to work itself out and so did this. Turns out it wasn’t the end of the world but merely a door to a whole new world.

I remember thinking last March that she would never be normal but wishing that she would be on the “high” functioning side of the syndrome. There were and still are times where the WS factor is just lost in the heat condition and her survival is all that matters. The heart still remains top priority in her care; as long as we have her I am happy.

Over the past weekend I watched my little delayed child have the time of her life. We are lucky to have Emma in Tatum’s life. Emma knows no disabilities: for her Tatum is just her baby sister and best friend. We often have to remind Emma to be gentle with Tatum while they wrestle around or while Emma is dragging her across the room. Funny thing is they both seem to have fun and when Tatum has had enough she lets Emma know in her own way, usually it is some crazy loud noise accompanied by some flaying arm gestures, really funny.

Also this weekend when I got home from work I noticed the biggest break through yet, 2 bottom teeth, yeah she actually has them. If you though she was a good eater before look out this little chubster took eating to a whole new level this past weekend, although slow she doesn’t seem to miss a beat or a crumb.

This first year has been a rough one and from what I understand the first one always is. I feel now that a burden has been lifted, her care is in order and competent, she is growing and developing much like a normal child of 9m (in comparison to Emma at 9m) and she is happy. I wish her heart was better but if I went through life wishing and not just taking what I have where would that get me…depression land?

Anyway…. I’m loving the break in the weather and daylight savings. I actually have some really funny pictures of my little girls from the weekend but I forgot the cord to download…. maybe I’ll get them up tonight or tomorrow. I also have a funny bath video and I swear Tatum is yelling at Emma…in between both of them laughing. I tell you those girls certainly are something else.

Saying Goodbye

Today is a bit of a sad day, a friend of mine is moving to SC :(. The nice thing about people moving these days is the Internet. At least you know you'll stay in touch and it does not require effort, much like the friendship that is moving...It is not like I saw or talked to Denise everyday but I knew she was there and vice versa. We did not have to talk everyday in order to maintain a friendship, that is why it is a great one and she is a terrific friend.

Denise has been a friend of mine since before we even moved into our current house, she is Jody's neighbor. I do not think that our neighborhood would be as much fun without her and her family, I guess we'll find out. I do know for sure that football season is not going to be the same, whose garage are we going to watch the games in now...I could just go on and on with a list of fun stuff we have done over the past 4 years and 2 days (HAHA) but I may just start crying so...I know this is especially hard for Jody, she is losing not only a neighbor and great friend but pretty much the only sain person on her block. We just have to keep our fingers crossed that new neighbors are normal.

Thinking back over the years we really have had alot of fun with Steve and Denise when we are all together there is never a dull moment. Concerts, swirly's , or football at home it makes no difference there is always a good time to be had.

When Tatum was born Denise was able to be in the operating room, she is a NICU nurse. Honestly I think she was my saving grace, it was so nice to have a in and someone to explain what was happening in English. She kept telling me to get her transfered ASAP. The one day that she was off was the day Tatum was transferred out. I had to actually call her and she came to the hospital so I did not have a breakdown. Denise, Jody and Carol were all good at keeping the breakdowns to a minimum at that time. I really could go on and on but the bottom line is I am going to miss them tons.

Denise and Steve we love you and can not wait to see you again soon.

A New Home

I am finally pleased with Tatum’s Care management, for the time being anyway. The eye Doctor we meet yesterday was awesome. They have all been great eye doctors but there was something about him that I really liked. The Wilmer Eye Institute is also pretty impressive...as well as the entire hospital. This was my first trip to the actual hospital, I think it is a bit closer then Fairfax, which is nice. The drive home was a little trickier just because I am not so familiar with Baltimore so one way city streets just kill me. Thank goodness Julie (my sister) answered her phone and hooked me up with directions home. Oh how I love driving in a strange area during rush hour in the snow.

We are scheduling surgery for Tatum a third time. The Dr. wants to do it ASAP since she is already one. The surgery to fix her eyes is most effective 6-18m, since Tatum is already one we do not have a tone of time. Dr. Brenner is going to have us come in for a MRI and after that as long as all is ok we’ll finally get a go ahead. I want to fix these eyes before if causes permanent damage. It is funny how for a baby cross is cute but for a kindergartener, not so much.
The other two doctors had actually told us that the surgery would most likely require a follow-up procedure for extra tweaking. At Hopkins they do the surgery in a way that they can tweak after they are complete on the same day, pretty cool eh. I would explain but it would just get lost in translation.
Yesterday was such a relief, at least he agreed with her other two doctors. . I had been told before that this doctor does not jump to operate unless there is no other option so I totally trust him. When I asked if glasses could help he answered no. They are not going to do the trick in her case. Due to the angle of both her eyes, surgery is the only answer. Finally a set of dr.’s got something right on the first try.

Thinking back (I really need to stop thinking back) the Day Tatum was born my Friend Nichole told me to take her to Dr. Brenner after we were out of the hospital. Everything was such a whirlwind then that changing doctors was not an option for me. When I was ready to take Tatum to the Eye Doctor, Farrah, a lady I work with, told me to go see her eye doctor. I total respected both of these ladies advice and opinions but just was not where I was at the time...Funny I guess I really have come full circle. I guess that is the important thing not where we were but where we are. I think you have to go with your gut and mine just took a bit longer to come around.

So all in all the visit was good and I feel pretty calm...well as calm as possible anyway.

I do have a question for you all....

Why are all the Great Hospitals in the GHETTO!!!!

Hopkins Here We Come...

Johns Hopkins Medicine Mission

The mission of Johns Hopkins Medicine is to improve the health of the community and the world by setting the standard of excellence in medical education, research and clinical care. Diverse and inclusive, Johns Hopkins Medicine educates medical students, scientists, health care professionals and the public; conducts biomedical research; and provides patient-centered medicine to prevent, diagnose and treat human illness.

WOW...I'm sold.

I just keep kicking myself because the thought to go to Hopkins just never really occurred to me. I did think it for a moment while I was still in the hospital from giving birth but at that time I had no real choices...I guess I just need to look forward and no longer back...should of, could of, would of...SO WHAT, I am there now, right? :)

Tomorrow we are going to Hopkins to see another Pediatric Ophthalmologist. The Crazy thing is all the eye doctors we have seen have been wonderful and other then the location of where they operate perfect fits. We are seeing Dr.Parsa since he is already at Hopkins and actually recommended. Chris and I along with Dr. Brenner have made the decision to have all of Tatum's care handled there, this is going to make everything easier for all involved. Hopefully my insurance is not going to have a problem with my latest slew of doctors... At least now I know the eyes are going to be fixed when she is ready and everyone is comfortable with it. Dr. Brenner is having a MRI scheduled for her and we can move on from that point.

Crazy 4 heart docs saw her and only 1 cleared her for surgery...Would you send your child to CCA...I know, I know, rehashing, but... I am most likely going to take any stab at Dr. Lindsay I can, so bashing her to anyone that well listen or read is something that may happen time to time...and when I say bashing all I mean is telling the truth...She is very nice but I think that her decisions speak for themselves...
Really the only 1 out of 4 no wonder she did not want me there anymore...crazy little lady!!! Good thing I do not hold grudges LOL... Don't worry I am really in the process of letting it go just a tiny bit frustrated at times...

Wish me luck tomorrow, Tatum and I are hitting this apt alone (due to the short notice) I am sure we'll have no problem driving around Baltimore. Actually I am not that bad with directions so going alone this time forces me to learn the way.

"i'm loving It"

I have never really understood how this happens but I would imagine it is the same for everyone. Before you have children you've swore off McDonald's and your certainly not taking your kids there.
Slowly, you find yourself stopping for something quick just once and then it is all downhill, suddenly everyone is eating cheeseburgers FF, and apple slices. The car becomes a graveyard for happy meal toys... I'll never forget the day Emma pointed to those huge golden arches and said "adonalds Mommy adonalds"... Maybe it is just a right of passage or something...
Saturday Steve ( Alex's Dad) took the girls to ballet and I stayed home with the little girls. On the way home he stopped and picked up McDonald's for everyone, although I made Tatum her own lunch she decided that it was the day that she was going to shock her little system...Yep you guessed Tatum LOVES french fries....it was pretty amazing, I did not even have to break it into tiny pieces, she dove right in...What is it with kids and McDonald's???

Still Cross

Today we visited the cardiologist from Children's in DC. We saw this doctor at a out patient center for EKG and a Echo. This was the first time we had seen this doctor. Tatum's eye doctor wanted her to be cleared for eye surgery not only by our cardiologist but also by their doctors. Long story short we did not get cleared. The Doctor to a look at her echo and suggested he present all this info to his colleagues. This seems to be what e everyone want to do when dealing with Tatum. I have a feeling that a MRI is going to be completed before she is cleared for eye surgery.

I half expected this to happen. As much as we would love to scratch something off the list of things to do as far as Tatum is concerned it seems like this one is not ready to leave yet. Three is a charm so I am sure next time it is scheduled we'll see it through. It really makes me cringe to think how quickly the old doctors cleared her. I feel awful that I had her seeing such an incompetent woman. Honestly I just want to walk right up to Dr. Lyndsay and pluck her in the forehead and say HELLO LADY !!!! WHAT WERE YOU THINKING!!!! Talk about God totally looking out for us. Who knows what that practice could have done to my daughter!!!

The Doctor we saw yesterday continually stressed to us how lucky we are to have Dr. Brenner as her Doctor. He also told us it really does not get any better then him. I was excited to have confirmed by another doctor what Chris and I were already thinking. When she is ready and everyone is comfortable we'll fix her eyes, there is no rush, we just want it do right.

On a lighter note: Uncle Lou (Duke Alum, we try not to hold it against him...) I am not sure if you read this but if you do I have a message from Chris... He wants to send you a broom cause you got swept...hehehe...Is it possible that the mighty Blue Devils may not make the ball???

LOL... This is in reference to Duke being swept by the Terps...It looks like the Terps are heading into March pretty hot...believe me I know it sounds crazy but when the Terps are playing well it makes my life much easier especially as we begin March... March Madness here we come...Wow time to get your brackets ready very soon. ...Nichole ( Emerson's Mom) I am feel your pain, if your Husband is anything like Chris I'll be secretly cheering for WI to pull it back together it is crunch time :) As long as they do not play the Terps were good.