Always something :) Usually fun...

So I was just wondering when did life get so hard????? We had another great weekend it was pretty hot and there were tons of thunder storms so our pool time was limited. We manage to make it up there for a bit on sat. evening before the big storms came. Emma was doing great swimming without her bubble. Chris and I got to go out for Dinner after that, ahh so nice. We had Emma L babysit for us, poor girl got stuck in the dark with sleeping kids,The power went out just as we were paying the bill...LOL ...She called looking for candles as we were on the way out so she was not stuck alone for to long. We were having dinner at a restaurant in our neighborhood. That was the craziest lightning I had seen in a long time.

Sunday was stormy off and on...every time we got all our things together for the pool it would thunder causing the pool to close. Finally we just gave up and hung out on Jody's porch. It was the final concert for the summer concerts in the neighborhood, a Sunday thing.....anyway they had a band and a moon bounce. There was hardly anyone there because of the weather so the kids that were there had a blast jumping and running around. Emma had alot of fun with all the big kids and even one her own age...It is pretty cute to watch her as she starts to really make friends and play. Tate like always was just lugged around by all the big kids :) She loves it!!!

I am really starting to be bothered by Tatum's lack of services from Infant and Toddler, our service coordinator called today and I told her just that. Maybe I am over reacting but I feel like if Tatum did not have a Dx and was a "regular " old 19m old she would have all sorts of therapy. Instead she has William's and is doing well for a kids with Williams....Whatever am I just supposed to settle for that???? Not gonna happen. I do not believe that OT, education and speech overlap and should be combined. I keep hearing that they cover the same things...BS...She needs speech once a week as well at PT.

Right now she gets PT 3 times a month OT 2 a month, speech and education 1 time.... I think that education and OT are very similar so maybe combine or drop one of those but my god the girl needs speech....We have a meeting set up for September and as much as I hate to be demanding that is exactly what I am planning to do. We need to work on walking and talking...she is so vocal as is I think a little help could go along way at this pt.

This Thursday we see Dr. Brenner for the first time since April...it is our longest stint without a echo since she was born, I hope everything is OK or better, who knows...I'll keep you posted... It has been a bit harder to post lately my lab top is having issues...the computer guy at my work referred to it as the blue screen of death...oops... I hope you all have a good week...

Why is it 10 and Tatum is still awake, anyone got a good sleeping potion for that girl :)

Mixed Emotions

I have to tell you all that sometimes I just do not know what to think...Really all this stuff about Williams in the media lately gets you thinking....It is really so one sided... I would like to think that Tatum is going to be just fine, no learning issues no social issues just one of the kids...But I can't help but wonder how it is going to be when our little sunshine is older. I am sure she is not going to be the center of attention forever. The big kids still play with Emma but it is different she thinks that she is the same age... she is actually able to participate in the games they play and enjoy herself. I am not sure if Tatum is going ot be able to hold her own withte big kids when she is 4.

The young adults that I have recently seen in video clips are great but really are they a good comparison to the kids of the future. These babies are going to be from a era that has no concept of life without the Internet...I think that alone is going to in able our children to have closer friends and become a bit more worldly but just how worldly is the Williams going to let them be. Well people always include her? Is there a point where she'll just become the "little retarded girl"?

I know that she is going to have there problems fitting in but nothing like 10yrs ago when there really weren't as many special kids running around in public.

I am at a weird place right now, people do not even know there is anything wrong with Tatum unless I tell them. She can not walk but as far a development goes that is the biggest thing that is setting her back from others her age...She can do most everything else a bit slower but she does it and on top of that she is way easier going and happier then most kids her age.

We go to the pool every chance we get and all the lifeguards know her, I barley see her when I am there between the big kids running around with her and the off duty guard stealing her. I often wonder how it is going to be next summer when she is not the "baby" anymore. She is loved on by everyone and if she is just entertaining herself people I do not even now stop to comment on her hair or how cute and happy she is. Emma is and was cute too but with all the attention she receives it is nothing compared to Tatum. Tate entertains everyone.



It is not just the pool it is everywhere. Tatum stops traffic where ever she is, even at the Carnival stuck to my back, she just hangs out and loves people....everyone around stranger or not get a huge smile. It is hard for me to imagine how someday things are going to change, I really do not even want to think about it. I know she'll always be happy and carefree I just wonder if I well too. I have read that the saddest thing about WS is that the kids are smart enough to know there different but just don't get why or how...Funny the interviews do not mention that. They all lead you to believe that these kids feel no emotion but joy...They are real people and I know she'll hurt too and so well I, How can I prevent this? She does not deserve the type of people the future has in store for her and there is nothing I can do...Wow so who is sad now... Am I even making sense or what? It is pretty late...

Today's Paper

Hi all I wanted to let you all know that Ella is doing much better...There is an article about her in our paper today....Ella and baby Kate and the front page...we were also mentioned...The lady who wrote the article is planning to do one about Tatum at the end of Aug.


http//www.fredericknewspost.com/sections/news/display.htm?StoryID=62820

"Cracking the Happiness Code"

Wow Williams Syndrome has become quite popular lately....This is a clip from GMA this morning...It is actually pretty interesting, it still made me cry... I do not think I could even imagine life without Williams Syndrome anymore, nor do I want to... Kinda shakes things up a bit :)

http://abcnews.go.com/Video/playerIndex?id=3393673

enjoy...

PICU Princess Ella is doing much better today :)

Double blogging

I have been updating my friends blog so mine is getting a bit of neglect this week...

HAPPY B-DAY CAROL :)

VBS- Vacation Bible School ( i was asked what that stood for)

Believe it or not Emma does have a shy side nothing major just a little timid around adults and kids she does not know....she does warm up fast though. It may just be her age...

Please continue your prayers for Ella she had a pretty rough night....You can keep up with her through her blog.....just go to Ella and Kate on my side bar or...

www.oursweetybaby.blogspot.com

Happy Hump Day

Morning...

Ella is doing well I have updated her blog if you all would like details...

Emma Loved VBS her only request was that I drop her off today so that is what I am going to do...

Oh How They Grow...

The girls just keep amazing me...Tatum is approaching that magic number 18m. Everyday it is something new....I think we even have her first real word to date...Not mommy or Daddy although she has been doing that dadadadadad thing for a while I am not counting that.....so anyway the first real word is Em Ma.....it is so cute and Emma is super excited. I think that she actually started waving this weekend too...It just amazes me to watch her doing so well, I love it!

Emma is just to funny for words lately...we changed her earring's yesterday it actually took my friend Carol and I to hold her down to change the darn things...she was dead set on wearing two different earring's she actually stayed home from the pool on Sat. because of it. I guess she would have loved the 80's...Emma ending up very happy with the new earring's and thankfully they both match. She has become very into her doll and doll clothes...Oh she is such a Diva.... This is a photo of Emma and her doll Emme, too cute.

Today was a great pool day the weather was great and the girls were both really good. Emma is getting better and better at swimming by herself if you could only remember or listen to everyone yelling kick, kick, kick...one of these day's she is just going to surprise us... I feel like I barley see Tatum while we are at the pool, she hangs with the big girls all day and just loves it.

Emma is going to vacation bible school for the first time ever this week. I am keeping my fingers crossed that she enjoys it. One of my friends is a director so I know she'll know some kids;Emma has a very shy side so this should be good for her... I let you all know ;)

I wanted to share a funny Tatum trick... Have a good Monday...Please remember to say a prayer for Ella, it is a big day for her...I'll keep you posted.




Keep Ella in your prayers, Tomorrow is the big day...

Emma's Friend Ella...

When I first moved to MD from NC I was pretty lonely. I left Chapel Hill in April , after March madness , and hi tailed it up to MD not a single friend here only my Uncle. I worked as a manager for Express in NC and tranferred pretty much to a store here...I worked in DC until September 98 then was finally transferred to a store near My Uncle's house in MD where I was living. This particular store had a Bath and Body Work's hooked on to it. That was the best thing ever because Nikki ( Ella's Mom) was a manager there. We immediately hit it off and have been friends since. We had such a good time working together, it made retail tolerable.

Nikki and Jason started dating the same time Chris and I started dated. I attended her wedding and she and Jason came to ours, we even have almost identical engagement rings. Her friendship is the longest one that I have maintained since I moved here 9 years ago it is amazing that we are still as close as we are I quit working at Express in 99.

When I found out I was preg with Emma I called her up, the conversation sorta went like this guess what? I am preg, me too....lots of laughter, she was about 8 weeks ahead of me, Ella and Emma are 2m apart and have always been friends.

Ella was born with tricuspid atresia. Tricuspid atresia means that she does not have a tricuspid valve inside her heart. Since the valve is not present the right side of the heart has problems developing due to lack of blood. Your heart is made up of 4 sections that comprise of 2 pumps and 2 holding chambers. One of the pumps provides blood to the lungs and the other provides blood to the body. Ella was born without the pump that provides blood to the lungs. She was airlifted to Hopkins when she was a few days old and has had multiple surgeries since then. She has always recovered with flying colors so I am sure that Monday's outcome well be the same. On the 16th of July (Monday) at John’s Hopkins University she will undergo what is called the Fontan procedure. This will hopefully be the last staged open-heart surgery required for many years to come. Of the many surgeries that Ella has had performed this one will probably be the hardest recovery to date.

Nikki and Jason have been wonderful to us since Tatum was born and before. Ella and Tatum have the same cardiologist thanks to Nikki being there for me. Honestly I think she could be a Dr. herself any question I had and still have usually gets run by Nik. I have thought that of her since Ella was born and now I know how she feels, it is not the best feeling but it is much easier when you can share it, she has been the Dr. way longer then me :)

When I asked Nikki what I could do for her while they were in the hospital she asked if I would start her a Blog...I have added the link to my list on the side...it is Ella and Kate, check it out if you want... For me doing a blog is way better then making a meal LOL

Anyway...I have a few older pic of Emma and Ella...I am bumbed because I can not find any from he girls first wiggles concert together, that was so cute!!! I'll have to get some more recent pics of the girls after Ella recovers, I know we'll be visiting. Emma is very concerned about her friends sick heart.

Please keep Ella in your prayers and thoughts over the next couple weeks while she undergoes the surgery and fights back during the recovery.

I hope you all have a great weekend.

Face behind the blog

Well I have pretty much shown my face all over this blog so here is something I have not shown ya all yet....

This is me in 1977 I was 2 I do not have a ton of old pictures, but If you think Emma looks like me you should see Chris' baby pics...

And now I have a wedding honeymoon short slide show....there are two pics from the hotel bar after the reception and the rest are wedding, reception and Hawaii....I wish I had time to scan more...maybe later :) Good Times :) In the Sprite of my reality TV addiction Chris is in front of the Local Motion from the Real World LOL

AND SHE'S OFF....

OK so I know this is a bit lame but if you could only see the determination this kids has...It is funny to watch her sit and process decisions, you can pretty much see the wheels turning when she decides to do something. So here we go up the steps, a few times up and down before bed really wears her out LOL

Mother like daughter....

I think we have figured out where Tatum's hair comes from....LOL....We are thinking we can be Thing 1 and Thing 2 for Holloween this yr...

Vacation

Vacation was alot of fun...I never go to the mountains in the summer time so this was something new for us.
We hung out at the pool, rode go carts, took the chair lift to the top of the Mt. and went to a terrific water park. Somehow in the midst of all that we managed a nice dinner with my Dad and Bonnie (my Dad's girlfriend) on Sunday evening and a beer and wine tasting on Monday afternoon.

The lift ride to the Mt. top was pretty cool, I had never ridden a ski lift down so that was cool. The view from the top was beautiful. It was Pim's first time in the Appalachian Mt's. so it was fun to see how she enjoyed it too. Emma was in a non photo mood so she does not even look like she was with us....This is her new I'm 4 attitude.
I think we all enjoyed the water park the best. There was something there for everyone to do, even Tatum. I got to ride a few of the slides and the were so fun, especially the three people tube ride....I think that was best with my Dad and Chris...we crushed the lifeguard at the bottom we shot of of the tunnel so fast, I have one picture in the slide show of my Dad and Bonnie going down one of the outdoor slides.... We all took turns riding the smaller slides with Emma, she was a trip to watch come down.

We returned home Tuesday afternoon and have just been on the go.

Yesterday we went to Dana's for the Forth, we had a great time. I did not see Emma very much the entire time we were there. I can not believe how grown up my baby is, she just runs off and plays. Tatum was good to always is, I can not believe she is so pleasant, the poor girl is only cutting about 6 teeth all at once. It was poring rain off an on all night so here were no fire works for us...Luck for us the carnival is coming and they have fire works we can see from Jody's house on the last night.

Today I was also home for a PT/education therapy session. Tatum played and wowed everyone. It was nice to be home and share in the progress that she is making...it is that magic 18m number I tell ya the closer it get the more she does...We officially lost her in the house on Tuesday...Emma and Tatum were playing in the living room and Pim and I were in the kitchen. You can see into the room from the kitchen since it is all one floor....anyway the phone rang, and Emma came in the kitchen leaving Tatum alone. This did not use to be a problem but now it is...I hung up the phone and asked where Tatum was....As I went to look for her I rounded the corner to head up the stairs...the non carpeted stairs and there she was happy as a claim sitting on the 14 stair, just 2 more to go before the top....I was mortified and so excited all at the same time...needless to say we are putting in gates...LOL

Tomorrow I am taking Tatum to the Shoe Train for her first pair of real shoes....This should be fun. I let you all know what we decided on. I have heard so much about this store and the man Ed who has worked there forever, the genetic Doctor suggested this place to us.

Vacationing at home is really pretty nice, especially when you have help with the kids :).....Pim took the kids to her house so I am am getting a much needed manicure..... I hope everyone had a great holiday....enjoy the pictures :)

HAPPY 4TH

I hope everyone has a great holiday....We are back from VA and had a great time. I'll post more later :)