Tuesday, October 31, 2006

Trick or Treat

Halloween is the best...I have always thought that...What amazed me tonight was for the first time I actually experience it from a "grown up" perspective. I can not believe how much fun Emma had with it! What a truly wonderful night...

Yvonne and Steve brought the girls up to trick or treat around 6:30. Yvonne and I took Emma and Alex out alone for a bit and when our cocktails ran out we headed home for the switch. The girls then including Bre;) went out with their Dads while Yvonne, Tatum and I gave out candy. The customes that kids wear these days are just to much. We saw everything from gangsters to the IRS. It did get a little chilly while giving out candy so Tatum went from Tinkerbell to bumble bee...She was a hit in both outfits :) I think that I was the scary one...LOL

Ashley and Rico ( little Leon), they go to daycare with the girls and live down the St., stopped by with their parents(big Leon and Nikki) just as Steve and Chris were bringing the girls back so we got to get a somewhat group picture. I had a really fun evening, I can not wait for next year.

Family Photo's

Remember the pics we had done on vacation....I have a little peak for you all :)

Monday, October 30, 2006

Mixed Emotions

I do not feel like talking about CHOP sorry... All I have to say on it is... Kati, Szabi's hands are a characteristic of WS, Tatum has the same little fat hands...so cute .I though about you the sec that Dr. Kaplan told us that :)

Tonight was not one of my easier, Tree's post was the straw that broke it...I loved the post but I think it just hit home and I was already dancing on the edge. Sometimes you just need a good cry. LOL
Not one Dr. returned my phone calls today, I have a ton of work to do, I just missed work last week and next week we leave Wed for vacation, and on and on...oh yeah Dr. appointments an such too...I have decided that I am pissed about it all. I did not sign up to be a researcher, advocate, along with my other jobs. I learned that I am the one who is going to know the most...YUCK, I already know way more then I EVER wanted to .OK ok I am done whining...

Oh yeah I am pretty excited about vacation it has only been planned for over a year :)

Friday, October 27, 2006

CHOP # 1

Well I am not so sure I know where to start, we received a wealth of information in a little bit of time. I learned some good stuff there the most important one being it goes not matter where you live and who you see unless you your see a specialist or you are lucky enough to live near a specialist for primary care, get ready to study.

I thought my cardiologist were terrific and do not get me wrong I still do but the things that Dr, Rome was telling us about Tatu’s heart condition were scary as well as informative. He wanted to do a echo ( Tate laid still for a good hour for the Echo Tech, we were all so impressed) and try to get disc’s of the two prior caths before he could give us his full opinion. We are waiting to conclude to with him over the phone. All our Cardio office sent was the report from the cath in June...LOL I am overjoyed with the sharing of information between Dr.’s offices.

This brings me to the next big thing that I just learned...I am going to copy Tatum’s file and from now on there is not going to be a report written that I do not receive a copy of. If I have to pay extra for discs of her past and future caths and MRI’s then I’ll be doing that as well. I do have some stuff in a file at home but I want everything. This way you can go see whatever doctor you want and noone has to know or be bothered with getting your child’s record. When dealing with my kids there is no room for admin errors so I’ll be doing it myself...hehe

Our OT and PT are awesome...you were right on track with eveything CHOP told us. They actually said to keep listening to you all and we are doing great. Tatu showed off all her baby moves to everyone that would smile at her.

more later...

Tuesday, October 24, 2006

It's Official

After a zillion phone conversations with all the wrong people Dr. Desuza, the best doctor in the world, spoke to a doctor at care first and the Williams's clinic has been approved. I know We are cutting it a bit close since we leave tomorrow after work to head up there, but who cares the important thing is we are going.

I actually have no clue where to go or anything once we are there because not a piece of information has been sent to me but we’ll see... so far if I was asked to rate this entire process I would have to give it a -6. That’s right a negative number...we can hope that there medical ability is much better then there admin skills. They leave a lot to be desired in that area, LOL...

I'll check it out and give you all a full report this weekend:)

Beautiful Baptism

This weekend was a really good one. The weather was beautiful, a bit cold be great. Saturday was our regular Sat. I took Emma to dance and ran around with Yvonne getting stuff ready for Tatum’s party on Sunday. After dance class we ran around some more then went home. Yvonne came over with the kids on Sat. night to help me get everything set up for the morning and I must say before we went to bed the house looked great.

Sunday started out good with the exception of one over tired three year old. We finally made it to church, that is a good thing since it was Tatum’s day. The baptism itself was great I really like the church that we have been going to and I think that Pastor is great. Tatum must agree because when he picked her up she flashed him the biggest smile ever. I am so thankful that she is a happy baby. The photo is of Tatum and her godparents, Angie( Chris' sister) and Joe( brother in law).

After church everyone came to our house for lunch and a open house type thing. The food was great( thanks Yvonne) and everyone was having a good time. I do not think that the last people left until 8. I am always amazed how I am able to pack so many people in my house without it being over crowded whenever we have parties. I know one reason is our group of friends the kids way out number the adults. This is a good thing in most cases because I do not think that I saw Tatum all day. It is much easier to entertain without a baby on your hip.

Tatum actually does really well so far in big groups, I am surprised that it does no seem to bother her at all. I am keeping my fingers crossed that this does not change since I really do like to entertain. I am thinking about doing a super bowl party for her 1st birthday...LOL

Anyway it was a beautiful day ceremony and party for Tatum. Thank you so much to everyone who enjoyed the day with us. You are all such a special part of our lives. Those of you that could not make it thanks for all the kind wishes, we love you all too. :)

One more thing....Nothing from Oprah yet and we are still not sure what is going on with CHOP. I have 24 hours to canceled so I am hoping to know something today. How frustrating this has been...

Friday, October 20, 2006

Oprah- We want your ideas

My daughter Tatum was born 2-10-06 with congenital heart disease. After this was discovered the hospital did genitetic testing and it was discovered that she has something called Williams Syndrome. She was DX by a positive fish test at 6 weeks.
Williams is a rare genetic condition (estimated to occur in 1/7,500 births), which causes medical and developmental problems. It was first recognized as a distinct entity in 1961. It is present at birth, and affects males and females equally.
As a new young mother this has been very hard. I have found support from other mom’s in the same situation that I have meet online. We all have blogs that make it easy for us to stay on top of each other daily lives and trials with our children. This is the link to my Blog… www.emmaandtatum.blogspot.com
The insurance companies have been an entire different racquet. I am only trying to get the best for my baby. I was recently denied a request to take my baby to the WS clinic at CHOP (children’s Philly). This was a request sent to Care First by my daughter’s pediatrician. I feel that insurance is a scam. We pay 800 a month for family coverage and until Tatum was born no one was ever really sick. When we need them now they are not here for us. How can Care First possible call themselves one of the best in the country? I feel that this has to stop at some point. Being a middle class family there is nothing I can do for my baby without insurance, we cannot afford these appointments out of pocket and my family income is to high for Tatum to qualify for medicade or social security.
What is it going to take for this nonsense to stop, is it ever going to be a equal playing field for all sick children? I am not sure if there is anything you all can do to help but figured it was worth a try.
I think awareness of this syndrome and our countries poor over priced heath care is a huge issue especially with the elections around the corner
When it is time for Tatum to have her heart surgery is the claim to have this done by the best going to be denied because it is "out of network" I bet it would be a non issue for the suits children that are making these poor decisions. So is what is good for the goose really good for the gander?

So maybe I am a bit nuts but this is what I sent to the Oprah producers…LOL

Thursday, October 19, 2006

Eye see You

I picked Tatum up this afternoon for her eye Dr. apt; it was a nice and short visit. They are planning on doing surgery to correct the Esotropia (a type of strabismus) on Dec. 12. I am pretty impressed with my big medical words but all it means is crossed eyed LOL.

Tomorrow we have a 9am apt with the cardiologist and then the weekend. What a full week. I am currently playing phone tag with her pediatrician about the super pooper that we still have on our hands….Kinda gross I think I am going to have to collect poo for testing. YUCK…That was not in the motherhood manual, then again neither was WS. LOL

Wednesday, October 18, 2006

Such a Bad Friend

I feel so bad and have been thinking about this all week. Although I did tell this person I am sorry I still feel crummy. I totally spaced a wedding shower this past weekend. My friend Lisa is getting married in November and her shower was over the weekend and I have no excuse other then brain fart…

Lisa I am so sorry you are a great friend and I am a HUGE slacker!!!! So sorry…Good Luck with your marathon next weekend, I know you are going to do great.

Sunday, October 15, 2006

Renaissance Festival

This was Chris' first year to go with me to the Renaissance Festival. He actually thought it was pretty fun. It is so funny to see some of the patrons dressed head to toe in Midevil garb. I think that is the most boobs you see in one place and really it is not all that pretty LOL...Anyway all in all it is a very fun but long day. Face paining, tons of food and entertainment it is way easy to loose the day there.

Tatum was a huge hit everyone just thought she was soooo cute. We were being stoped all over the place by random people, some even wanted to take her picture. Steve, Yvonne's husband, comment to that was better check the blogs tomorrow she may be on someone differents... LOL. Blog envy HA-HA. One lady did ask me if she was three months old, HA all I could think was oh gosh it is starting...I just laughed and said no she is 8m just a peanut.

It was a beautiful day to be outside and we all had a really great time. I think it is going to be much easier to get Chris to come along in the furture now that he nows how fun it is, and the beer is pretty good too. :) I think Tatum even liked it, or atleast holding the mug LOL.

It is so nice to know that the four of us can always no matter what have a nice time together, and our friends that went were pretty fun too. Till next yr...

Wednesday, October 11, 2006

It is Amazing what a Little O2 can Do

Last time When Tatum had her Cath and Ballooning she had a few weeks of firsts . . . If you remember she starting reaching, holding her bottle, passing objects and best of all those smiles . . . Well this time the amazing Tate had PT, Monday, and OT today. Needless to say she wowed everyone with her stamina and her new tricks.

When we got home this evening Emma and I were getting our evening dose of ET and Tatum was hanging out loving some tummy time. I looked at Tatum out of the corner of my eye and I caught her on all fours. Yelling for Chris to come downstairs I ran and got the camera. Tatum showed us who is ready to move!!!! I am sure we have a way to go are far as really moving but I was stoked:) After this I moved on to seeing how long she could maintaine her balalce sitting... Hopefully I tired her out and she'll let me sleep.

I Caved

Ok so when I finished my last post I got Tatum up held her gave her a bottle and she was out in five mins... that was about a hour ago...so atleast she is going to have a small nap before Terry ( OT) gets here any min...What am I going to do with that girl. I guess Emma is right she says "Tatum is nocturnal" kids where do they come up with this stuff.

OH YEAH,...I have to brag a bit. Emma wrote her name!!! She loves to write on the patio with chalk and now she wants to write everyone's name. We were so impressed to see her actually write her name with no help :)

Cry it out?

I feel like this is a pretty good question...Chris just asked me a few mins ago when were we going to let tatum cry it out....So right now I am typimg on the computer and listening to her SCREAM. It has been about 5 mins but feels like 50, really though give me a brake she has been up since 3:30, I know that girl has to be tired. At this rate she is going to just be a peach for OT in a few hours. She is really determined, just not giving up and it just breaks my heart to listen to her but I do not know what else to do. This is two 3:30 mornings in a row yipeee we are on a roll.

When do you just let them cry? For how long....I am a push over...Going to get her now...

Let the day begin I am already showered...LOL I did that a hour ago.

Sunday, October 08, 2006

Pro's and Con's

I am sure the con's big time outweight the pro's but I am making a list any way. This is my WS pro and con list... It is amazing how I made it through one child without any of these words ever crossing my mind. Atleast no in reference to my child. NICU; PICU;Calcium;Low tone;PT/OT;Aorta,Pulmonary Arteries, Heart Cath, Sedated anything, Hernia, MRI, Low Weight Gain, leg brace, faliure to thrive,scoliosis, electrolyte check, WILLIAMS SYNDROME...I am stoping but I think the list could go on and On.

The only pro's I have managed to come up with are these pictures :) and blogger has placed them everywhere:) I think meeting these ladies has made it worth. There are also more that I do not have photo's of. Thank you all for being the upside, it would be that much harder without you.

Thursday, October 05, 2006

10/4 and 5

This blog is the first one written by me(Chris). I’m the dad that no one hears from. I work behind the scenes, to keep the show going flawlessly. Lisa and I are at the INOVA cath lab, and Tatum has just come out. Everything went well. They did what they said they were going to do, plus some. Its always nice to get a little extra for the $18,000 spent for the procedure. I guess we can’t complain about what we get for our health insurance dollar(well someone has to get their moneys worth). As I was saying, the docs went in with their little cath things and took multiple pressure measurements. All were pretty good, except the pressure difference between the upper and lower aorta. This was a problem they noticed before but were content on letting it grow on its own. This time they saw more of a pressure difference than they would like. So they put the cath where the narrowing was and ballooned it out, to make sure it wasn’t hard tissue and would grow with her. And it was, so no further action was taken. They also ballooned out her pulmonary arteries as planned. Other good news was that the measurements taken of the size of the arteries was very close to what they measured by a sonogram at the cardiologist. Its just nice to know the sonogram results are accurate. So Tatum is recovering well and we’ll be going upstairs to a room for the night. This is just precautionary to make sure she’s doing okay. I’ll be leaving soon to beat the atrocious D.C. metro area traffic, to pick up Emma. I’ll see if I can count how many times she asks “where’s mommy”, and how many times I have to tell her “she’s with Tatum at the doctor”. Maybe next time post I’ll be able to tell you how my racing school went. Its at the end of October. For the school I’ll have to rent a car, but next year when I race I’ll have my CRX ready to go. I went to race school about 15 years ago, then raced go-karts for a couple of years. I’ve been geeking to get back on the track ever since. So I’m getting pretty excited. I have to give props to Lisa for giving me full support on this endeavor. She kind of has too. Unless she wants a major crackdown on the almost daily Pottery Barn/Gap/whateverthehell.com packages that greet me on the porch. That’s all for now. Maybe next time I’ll have a pic of my racecar to post.


Well I think last night was a tough one for Both Chris and me.Chris had Emma who was missing her Mommy and I had Tatum who was missing sleep. Due to her poop issue we got a private room, at least one good thing came out of it... Autumn came and brought Chinese food and Ben and Jerry’s, Yum. After she left, I went to sleep but only for about an hour and a half. Tatum woke up about 12:30 and was up until two. At 2 I was over it and the nurse took her to prevent a mental break down. All the nurses remember Tatum and just love her I guess she has been here every four months since she was born and is the only Tatum . . . everyone was so impressed with how big she has gotten.

Right now I am just sitting around waiting fo/5r a chest x-ray so we can leave, I wish they would hurry up I want to go home. I am ready to not have to be back here for 4-6m hopefully six and I promise next time I’ll remember my cell phone. :( Chris had left me his but it just died . . . I wonder what else can go wrong . . . Blogging in word is kinda funny but of coarse no internet service. I guess I should try to enjoy who knows if I’ll ever get my own room again . . . but really enjoy a hospital, YUCK!

Amy, Avery’s Mom told me a little game called make the resident cry... Amy your still up on me I could not make anyone cry but don’t worry I am not giving up that easily I’ll be back this winter for round two. Anyone else want to play HAHA. The things you do bored at the hospital.

Tuesday, October 03, 2006

Not so Sure

I am not so sure what is wrong with me today. Daycare called this afternoon and I had to go get Tatum early because of her uncontrollable poop, you would have thought that my fish died or something...I could not pull it together. I rushed her back to the Dr. and she is fine just has diarrhea. I think I am just finally losing it but I just have this awful feeling in the pit of my stomach.. Emma is going to Yvonne's tonight so I won't even see her until Thursday when I get home with Tatum, I already miss her I did not even get a extra hug... I guess I am just having one of those days... Perfect timing eh. I'll let you all know about tomorrow as soon as I can.

Monday, October 02, 2006

One More Day

Well if all goes well the Cath is Wed. Tatum had a bit of fluid on her ears so she was given a small does of antibiotics to clear them up. She has been a poop machine lately maybe due to teeth or a stomach bug who knows but her diaper rash is out of hand... Anyhow all this combined landed us in the ped. office today. Trying to stay healthy until after Wed. please nothing go wrong she really does need to have this cath done. Pray for Tatum she is starting the week off a bit rough.

On the plus side that little chunk is tipping the scale at a whopping 14.9, I guess someone in my house likes my cooking...LOL or the way I mix baby food and rice cereal together HA. Who am I kidding cooking yeah right... ;)