Party party party...

The party went really great, thanks to everyone that helped me out with it. I was a bit stressed out on Sat. morning because I still had a lot to do. I was planning to get everything or a lot of it done while Emma was in ballet class but that three year old attitude reared it’s ugly head and dance class was the first thing to get taken away. I so love it when the kids learn a t lessons at the Mommy’s expense. I came home mid errands to drop stuff off and got mad at Chris because I though the was doing nothing but to my surprise when I got home he had hung some pictures and done the other things that I had asked...sorry Chris...:)

We really did have a good time once it all came together. Tatum was in a pretty good mood considering she has a cold kicking her butt. When people come over for parties I do not think I see Tatum or Emma for most of the day. My friend Carrie told me at one point she counted 19 kids in the toy room…WOW… and my Mom says she lost count at 47 people…I do not know how to have small parties. It is pretty funny because there are kids and adults everywhere. I wish that I had more time to visit with everyone but from the pictures I have seen it looks like Tatum made her rounds...

One thing we have to figure out is how to lock the Master Bedroom. I just gave Emma and Alex a lecture about staying out of my room (only room in the house with no lock???). I seem to find random stuff in our refrigerator or in other places when we have people over so I know the girls think they have free rein. Anyway later in the evening I ran into Emma and to my surprise she was wearing my makeup…She had gone to my room, alone she assured me, flipped over a laundry basket by the sink and did her make up…That girl is crazy!!! You would have thought that she was the one drinking Mojito's...LOL

The day was a success Pim came and everyone LOVED her, that made me feel good and the house was not so bad on Sunday morning…I think the last people left around 11-11:15…got to admit I am a bit tired today so I could really use the snow days that they are predicting…. They say that this is the big one coming, I guess well see.

Thanks everyone for making Tatum’s b-day so special and all her gifts are terrific. Opening presents became a bit of a show so I do not really know where they all came from because there were cards everywhere, I promise I’ll get thank you notes out at some point. Can you all believe are little angle is finally 1??? Mommy, Daddy and Emma love you so much little “Taterbug”…..

TATUM'S 1st BIRTHDAY

SHE CRAWLS!!!

Last night I was over Yvonne's house, all the kids were playing and we were watching Survivor. Tatum was just rolling around playing on the floor like normal on the other side of the room. Before I knew it Tatum was on the side of the room with the other kids sitting up smiling!!! As you can imagine I was very excited, What a great Birthday gift :) She is goingto be all over teh place now...

Alright I think it is time for some teeth...I am begining to wonder if they are even there!!!

Just like Mom

I uploaded pictures from last week this today and got quite a kick out of them. Emma is just so funny and so much like me sometimes it is scary. Look Emma likes Uggs too, I bet Chris is going to be so psyched. I guess it is true the apple really does not fall far from the tree.

I left my camera with the daycare ladies for Tatum's last day, they all looked to be enjoying themselves. I brought in cupcakes for Tate's birthday a bit early and gave the ladies some money for pizza, I guess I wanted everyone to have a special last day. They made a beautiful card, that I am going to have framed,with all Tatum's teachers and friends hand prints. From the pictures you can see that Tatum shares my love for sweets. I can not wait to see what she does with her cake on Saturday. I bet she is just going to be to cute!!

Pim's First Day

Well I do believe yesterday was a success. My biggest indication of this came this morning when Emma told me she wanted to stay home with Miss Pim instead of going to see her friends and Miss Dee. Since it is only like 10 degrees outside I did not push the issue, I just left the girls all making breakfast. Emma wanted pancakes and Tatum was eating her apple cinnamon oatmeal.

Yesterday Emma and Pim rearranged Emma's room and learned how to make the bed, the house did not even look like people were home all day. I got home and Emma told me that Miss Pim is beautiful and was so excited about the braid that Pim gave her.

When we were getting Emma ready for bed last night ( Tatum crashed pretty early) Chris made the comment that he thinks it was the most time he had spent with his girls on a work night ever. Already a happier house, WOW.

My Big Girl

I can’t believe in just 5 short days my little baby is going to be one. Over the last few months the we have noticed that she is certainly becoming a funny little person, she laughs out loud more then anyone I know. Maybe I am a bit prejudice but I just think she is the cutest thing ever and quite the roller. I am sure Emma would agree since she now calls her “Little Cutie”, she certainly does love that baby.

I was able to dig up some pictures of Tatum the day we brought her home from the hospital, I wish I had some from the hospital to share but she is all tubed up and on life support so they are not real fun to look at, actually they make you want to cry.

Over the past year Tatum has touched my life in a way that I was not expecting, I do not know if I am a better person for it but I do have a lot more patients, so that is a good thing. Nichole said it best on her blog this has been the fastest longest year of my life. I do not think that I have ever been so happy, sad or cried this much in my whole life but the good thing is I am getting used to it. Nothing like a good emotional roller coaster to keep you on your toes, right?

I just want to thank everyone that has helped out with the girls this past year and dealt with me, I am sure I have not been the easiest person all the time. Well I guess I am as ready as I will ever be for year two, lets hit all those milestones together.

Good morning....

I feel so much better about Monday. Pim come over on Sat. and spent most of the day with us. I do not want to jinx anything but she may be to good to be true. I am not worried about Emma anymore she is going ot be fine. When Pim was leaving Emma asked why she was going because I did not go to work yet, clearly she and Emma are going to get along great.

Pim also told me how she went on line and read alot of information about teaching children with WS, impressive eh. She also loves to cook so I guess the girls are going to get a wide variety of food, at least during the week.

On a separate note I have enough formula left for today. Yesterday Morning I had to take Emma to the Dr. she is fine ...She has these coughing/asthma attack things and I end up having to Nebulize her. It is weird it only happens in the middle of the night and not very often...anyway... I asked the doctor while we were there if I could start Tatum on milk. Her respopnse was sure she is not "failure to thrive" finish up what formula you have and switch.

We regularly check her calcium levels among other things so we would notice if there was something wrong but I guess I am wondering if anyone knows a reason why I should not change over to milk. Currently Tatum eats three meals a day combo of number three baby food or soft people food, lack of teeth is killing me....anyway I am rambling Milk is it a go or what???


GO BEARS.....This is who we are cheering for today because Emma wants Uncle Geoff's team to win. LOL

Change, it is good.

I went to get the girls today and Miss D was playing with Tatum. This was the first time that I actually saw her taking care of Tatum, she is usually with the big kids. It made me tear up to think about leaving daycare, we are comfortable there, it's all we know. Miss D said she is really going to miss Emma,and I know Emma is going to miss her. Emma was at Miss D's house for about a yr before all the kids there went to the center. I know it is time for us to move on but I love the people there. Until tonight I have been really wondering if a Nanny is the right decision, sad or not it is happening and it is best for everyone.

As I was driving home in the blizzard,well just light snow but the traffic was screaming blizzard, it took 2 hour's start to finish and Tatum screamed off and on for the last 15. She was great as long as Emma was playing with her, unfortunately for me Tatum could not hold a candle to Chicken Little. ...How did our parents do it without DVD players in cars... Anyway...

This drive lead up to life with no daycare... For instance I would have been home by 6:30 at the latest even in the snow...Not that it takes long to pick the kids up but I always seem to spend time chatting, imagine that.

It is going to be so nice to not have to rush to be there by 6 for pick up, if i get tied up at work its OK...
The biggest/best change is going to be the morning, no more making bottles while trying to keep kids happy... bundling up for the 17 degree mornings...and best of all no more kid music, movies or voices on my way to work...I am just going to love them more when I get home because I got alone time on my drive home to wind down after work.

OK I am convinced is it Monday yet????

HAPPY FEET!!!

Thanks you all for the comments email and calls in reference to my last post. I certainly do feel better and I do know that Emma is not neglected one bit. If anything Emma’s biggest problem is that she is spoiled…oops my fault. In any event I did make sure that Emma got some quality one on one Mommy time this weekend, and I am not counting Sat night from 11pm till 3:30 am while she was boycotting sleep.

Sunday afternoon Emma and I went to see “Happy Feet”. The movie was very cute and long ( 2 hours), Emma really seemed to enjoy it. Actually if you had seen us there you would have thought it was a concert and not a movie. Emma was a wild woman dancing in the isles, I think she is going ot want to take tap now…
UGGG we are so going tot have to worry about that girl, she is a party animal at the tender age of 3…
Anyway just wanted to say thanks again for all the kind words…Happy Monday it's freezing here...BRRRRRRRRRRRRRRRR.....

Bureaucracy at is finest

Today I dropped my Girls off at Daycare and was greeted by Sydney. Sydney is from the
county child development program. She comes in the center 1 day a week to work with the 3 and 4 year olds preparing them for kindergarten. I was aware this was going on but really though nothing of it, until today…

This Woman presented me with an article called “SUPPORTING SIBLINGS OF CHILDREN WITH SPECIAL NEEDS”, while giving it to me she also let me know that she felt Emma has some emotional issues. Although she is clearly one of the smartest children in the class and has a ton of friends she tends to melt down very quick and be emotional when she does not get her own way. She told me that from her observation she guessed we spend most of our time with Tatum and maybe Emma is not getting enough attention at home. I guess her 20 years of part time experience allowed her to jump to such a bullshit conclusion. She questioned out bedtime routine as well as the time we spend with her. Her suggestion was family therapy and a book “How to talk so Children will listen and listen so children will talk”. I am sure it is a great book and I’ll more then likely pick it up unfortunately it is now number five on my books I have bought with no time to read list.

I was in tears by the time I left Daycare…I called my boss to tell her I would be a tad late because I had to get it together before I could go to work. After talking to Chris I went from sad upset to pissed off upset. First of all Emma is in no way ignored if anything we give her more attention because we do not want her to feel neglected. Emma is very aware that Tatum has a sick heart and lots of doctor appointments and actually included in some appointments. As far as emotional meltdowns I though that this was something common in three year olds, am I wrong. I would and will think that Emma has a problem the day she is having these meltdowns and her friends aren’t. As for now she seems no different then every other kid we are around.

I honestly feel like this woman thinks that she can pin point something on Emma because she has a “special needs “sister. I am aware the Emma is emotional and we are working on it but it is by no means out of hand and it is no different today then it was the day before Tatum was born. I feel like as a parent I am suddenly be analyzed and evaluated because we are a “Special needs family” Give me a break does everyone have to have an issue or need counseling because of life. Tatum is a baby that has nothing to do with the WS, Emma is 3 and emotional, that has nothing to do with the WS. Me being crabby may have a little to do with the WS but not a whole lot….

I hope this lady feels better and can go home tonight to enjoy her weekend knowing that her 20 yr part time allowed her to DX yet another well adjusted three year old… Really is this the face of a unhappy neglected three year old???

Daddy's Girl

It is just crazy when I say Daddy's girl as far as Tatum's concerned it is the biggest understatement of the year. That baby would rather have Daddy any day over me. Emma loves her daddy too and always has but I am Mommy and you all know how that is... I guess it is a good thing for me but sad too, really who has ever heard of a baby wanting Daddy over Mommy.

Last night Chris was putting Emma to bed and I had Tatum. Tatum played for a while and then started to get fussy, about this same time Chris came to the family room from putting Emma down. The min. Chris entered the room it was like baby radar went off...She followed him with her eyes around the room and when she realized he was not picking her up she had a fit. The second Chris picked her up all was good with the world. If anyone including me is holding her and Daddy comes in the room she extends her arms out to him for Chris to hold her, it is you typical Mommy clingeyness only it is directed towards Dad...Too funny, I guess she is like her Mommy where Chris is concerned...whats not to love;)

Welcome Pimmy

Well we made a decision and Starting in Feb Pim is going to stay home with the girls. Miss America was great but the language barrier was a bit much and I just do not know if I can call someone Miss America everyday. Emma needs someone to talk to during the day and while she would get used to Spanish I think that the transition for her is not going to be a easy one,why make it harder then it has to be. My friend Carol is a speech therp., she and her colleges felt it would be better to have Tatum around more English, especially if we know she is speech delayed. I am also not to sure how messages would be relayed to me or what would happen in the event of a emergency with America in charge.

I have forwarded Pim a lot of info on WS so she can understand Tatum a bit better and also so has know what the signs of HD are, she'll be aware of what to look for. Pim seemed eager to know about WS and very excited to start. She actually told me that i made her day.I have not called America yet to tell her it is not going to work out I think that it is going to be Chris' job this evening.

I have not really been having the easiest time the past few days every time I think about the future or little Tatum's heart it makes me sad. I have really been good for so long I am not so sure why I am falling apart about it now. Maybe it is because she is almost one or maybe it is because everything is coming up on a yr. I guess it could also be the reality that this is a permanent thing and my biggest fear is out living my baby, what a sick thought...

I hate to complain about everything almost as much as I hate to discuss the issues with most people but it is my blog and if I want to complain I am. I do not think that this necessarily means I am here in MD losing it I think it is just I am human and sad. It has just been a emotional past bunch of days...I have to tell you taking my kids out of daycare is also tearing me up, I get tears in my eyes just typing about it.

This past year I have really learned alot, nothing is perfect my live is in now way shape or form turning out how I expected and change is very hard. Through everything I do know that Chris, Emma and Tatum are my life and without them I really would not be able to make it.

I am so ready for a much calmer 2007 but I can let everyone know now I have my hands full so please so not expect anything out of me. My NY resolution is to no longer over extend and make sure that my family is first on the list.

Tough Choice

We have no clue what nanny to choose, both ladies we meet this afternoon were awesome. There were good and bad things about both, Miss Pim and Miss America...

Miss Pim is about 29 very sweet and Emma just loved her.

Miss America is older speaks little English and Tatum loved her...

Pim is $50 a week more then America, Pim lives about 20m further away...

I think that Chris and I are both sorta leaning toward Pim but at the same time I think that America would do more around the house and stuff for us. The problem I see with America is the communication barrier that she is going to have with Emma. Oh what to do, any suggestions...Maybe the language thing is not such a big deal.

Another plus to America is her previous employer are friend of ours. I opened the door this afternoon to meet Deena, America's old boss, and we actually knew each other. It did take a while for us to remember why we were familiar...I had not seen her since Emma was about 6m old, we ran into each other at a biathalon. Deena's husband Steve, Chris, and Nestor used to do all their Iron man training together...Friends from a past life, the old life of a triathlete...small world eh.

Once Chris found that out he was ready to take back the nanny cam. Kidding we really do not have a cam yet but it is something right up crazy Chris' ally. I guess we have to make a decision sometime this weekend...all and any help is appreciated.

I took this picture this morning on the way to Dance class and just thought it was to cute...My little sleppy girl :) Isn't she sitting up like such a big girl now... Can you believe she turns 1 three weeks from today.

Heart Update

I spoke to Dr. Brenner this afternoon it was really nothing earth shattering but it very nice to be informed. The first thing he told me was it is justified and totally fine for me to worry and be a bit nutty about Tatum.
The approach going forward is going to be different then the past approach. Dr. Brenner and his Colleagues feel that the risk of being passive is much safer then the intervention, especially when the intervention has had no accomplishments. They are going to see Tatum every three months at Hopkins, her HD is way to severe to be seen in a field office. They want to be able to take there time and have other see her if need be. We are going through with the eye surgery in Feb and Dr. Brenner is wants me to page him from our pre op meeting on the 7. He actually gave me all sorts of numbers to get a hold of him night or day.

Tatum has a right Coronary dominate system. This is common, what is uncommon it the right coronary is very large and the left is very small. The right one has a degree of obstruction were it branches off from the aorta at the beginning of coronary artery. Her aorta is what it is, very small but she has good pulses in her feet so…. Her pulmonary arteries are a “nightmare” or “pretty awful those were the Dr.’s terms…. Always nice to hear…Her LPA is diffusely small with additional branch stenoses all over the place. He compared them to a Exit off 95…If there were piles of trash in the road when you got off to exit you would have to squeeze by them…That is what her blood flow is doing…sometimes when the flow is not good they actually collapse. The RPA is a little better then the left. Tatum’s blood pressure is also higher then normal with put her at risk every day for a stroke but so far so good so we are not going to worry about it. She is not able to take meds for the pressure because it needs to be higher to maintain the perfusion of the coronary arteries.
We are not doing anymore Caths for the moment the Doctor feels that cathing her puts her at a very high risk for a Arrhythmia and the past Cath’s were really hard on her groin or whatever it is that they go in through so we need to preserve them for the time being.
On the plus side he did say that it would be safer if she were not in Daycare.
At this point I do not know if I should cry or just be numb to the situation, there is nothing that I can do to fix her all I can do is enjoy her.

Hopefully these pictures can help you too see a bit better what is going on in little T. The Aorta stenosis is hard to see because the decending part is behinde the picture.

Doing the right thing?????

Sometime I wonder if I am really doing what is best for my children. I try my best but then I second- guess, I think this is pretty common but who knows. Actually today I am more worried about Emma then Tatum. My number one question “Is a Nanny what is best for Emma?”

I know that Emma is going to LOVE staying home this summer she is going to be able to join the swim team and hit the pool everyday this is paradise for Emma. My doubt comes in because I am taking her out of a learning environment and from Miss Dee . We’ll still see Miss Dee and until summer I plan on leaving her in Daycare 2 days a week, Tue. an Wed. If she does not get into the Pre-K class I have no idea what I am going to do, I know she needs to be in a classroom setting but I am not on any pre-school waiting lists.

I have to give a month notice at Daycare I did this today. I have two interviews on Saturday the second I feel is much more promising then the first. The first lady, Pam, is about 175.00 a week more then the second lady and the second lady, America. Yep her name is America…just like Ugly Betty, hehehe... I have spoken to America’s previous employer and she is actually going to come over on Saturday with America. She is very affordable and is highly recommended, I have a great feeling about her.

This is supposed to be a good thing why am I letting it stress me out!!!!!

My New Plan

So the search is on. I have a huge plan in my head now if only I could get it to work I would really be excited. In order for my plan to work Emma has to be selected in a lottery to attend a pre-k class at the Elementary School for a ½ day 5 days a week. This is the kindergarten class for special needs children; they open it to 4yr old's as pre-k. I think this would be a fantastic place for Emma, hopefully it well help her understand Tatum better. It would also make me feel better if Emma was in some type of learning environment her final yr before Kindergarten. This free program would be just to perfect, I think I am due for a stroke of good luck ya know…

I have contacted the principal at the Elementary School on the other side of our neighborhood. Unfortunately this is not the school that Emma is supposed to go to but do you really think something like location is going to stop me…Come on you all know me better then that by now. We all also know that I really do not like to take no for a answer, I guess that is why Chris always wonders why I even bother to ask him things…LOL
If I do not hear from the principal today I’ll call again tomorrow. I also have the name of the Kindergarten teacher so I may give her a call, every little bit counts right?

I am open to any suggestions helpful hints whatever info or pointers you all have that you think may help…keep your fingers crossed for us. School for Emma and a Nanny, I must say I am hoping for the best but preparing for the worst…

Good morning

Yesterday was MLK day and Daycare was closed. Chris's Mom and Walt came over in the morning to watch the girls. The girls had a great time with grandparents and it was way easier for me when I got home. Terry had dinner ready for us, very cool, and she even helped with the laundry. The nicest change was we were done eating by 7 and I had both girls in and out of the tub before 8. This has happened ahhh NEVER!!! It was so nice to actually have the girls ready for bed and able to hang out as opposed to rushing through baths and books to make it to lights out by 9:30. I am kinda thinking my kids are so used to unorganization that this smooth evening through them for a loop. Emma was a horrible sleeper last night and Tatum got up twice...She fell back to sleep pretty fast both time so no biggie...For now I am trying to get her to go back to sleep so I can jump in the shower, she has about two mins left before she is swing bound...we have Pt in a hour so a fast nap would be great.

I have a Nanny lead...I have to call her back today...maybe this well work out, who knows

HMMMM...

I am finally noticing Tatum getting older. It is funny watching that little personality grow, wow it is about time I have been waiting almost a yr. She is just so delightful forever laughing,smiling and always rolling. Her newest thing is food, she wants food. Every time she eats it she end up choking, spitting up, or someone fishing something out of the back of her throat...She has no idea how to swallow real food but that is not stopping her, she throws it up and goes for more. You can see in the picture it does not really bother her, I guess I am hoping practice makes perfect...

My Friend Yvonne gave me this very cool table for the girls to use in the kitchen. I hate highchairs and really needed something. I have always had a little table so I just traded it for this and presto...we have dinner for two. I give the "Babee Tenda feeding table" 4 stars it does all sorts of cool stuff.

I did get a Email from the Cardiologist today, He has received more of her films.The plan is to present to a group of Docs on Friday AM, he was also concerned with her coronary artery. We'll be in touch after Friday and set up a time when we can all sit down and talk. I have a knot in my stomach just thinking about that day. So we wait...I think those words are becoming a permeate part of my vocabulary.

Weekend Update

We were planning to go to a wedding this weekend in Dover but ended up staying home. Tatum is still not a 100% and Chris and I are both beat.

Besides all the laundry I have done this weekend we watched MD Basket Ball team win and then the Eagles and Baltimore fall. Although they were both great football games they just were not good enough. :( The good thing that did come out of being stuck at home again were the visitors...Our friends Rick and Kyra came by for the MD game and My sister and Baby Molly can for the football games. Uncle Geoff had tickets to the Ravens Game with the boys so Jul and Mol came to spend the night at our place. I think we had a better view of the game anyway and our drinks were much cheaper...LOL Since the girls were fighting naps all day we had all three asleep by the 2 game kick-off... Wow an adult evening can you even imagine...to top it all off everyone slept through the night...we did get up at 6am though :)

Today I have big plans to finish cleaning and laundry...I am actually putting it away too. I know you are most likely wondering where the real Lisa is but rest assured it is me just a motivated version today...If were lucky I may even figure out how to upload my cam-corder to my blog...who knows

Louisville

This was a terrific WS experience. I can’t tell you how relieved I feel and so much more at ease. I do know that we have a very long and rocky road ahead is inevitable but for know it makes me happy to know that we have done and doing all we can and she has the best care (finally) that she could possible have. I was told the “firing” was the best think that has happened to Tatum. With the severity of her heart problems she really need to been seen by specialist and those familiar with WS. CCA was not handling Tatum as a WS patient, it was also recommended that I contact the WSA and have them make a not to not recommend CCA to future Williams kids in the area.

I had the opportunity while I was in KY to meet a few WS parents and kids. The parents were all great and the kids adorable. Let me just tell you all that pictures do not do Matthew justice, he is adorable and very busy J…I also got to meet Cole, adorable, he reminded me of Daven, he actually lives in the same State as Eric…Then there was Abigail, some of you may remember hearing from her Mom on the list serve she recently had heart surgery. She is doing great and just as cute as a button…

After all Tatum’s evaluations we determined that her fine motor skills are up with an 8m old and her verbal skills are about a 6m old. It was recommended that I have her hearing and thyroid checked. We want to check the thyroid because she still has no teeth and this is a symptom of thyroid issues…thanks goodness that is she does have a problem there it can be fixed with meds. The hearing I’ll have checked but I think it is fine. I have notices that she inherited the selective hearing quality from her father.

That pretty much sums up KY…the research they do there is awesome and I really think that it is a promising place for anyone to visit, if you have the time. You can really see how much these women care and want the best for our children it is so nice to know that there is research being done.

Really?? Is It Winter???...

Well it was another beautiful day out here on the East Coast...I keep waiting for winter and it is just not happening...It is chilly in the morning or cold at night but anywhere from 48-70 during the day, it's no wonder my office is sick.

Today has been great. I woke up this morning and took Emma to the hair salon for her very first trip. Although Cali had come to our house when Tatum was born and trimmed her a bit then this was her first official trip. If I had to guess we cut a good 5in off, I can tell, I think it looks cute. From the hair salon we went to dance class and from dance home. A very busy morning. Once we got home and had lunch we got Tatum ready and went outside to play. We were out side for at least 2 hours. We actually ended up going to the park with Ashley and Rico. Emma and Rico go to school together and also live in the same neighborhood. After a bike ride, trip to the park ( Tatum did swings for the first time) and walk home we have settled in the toy room in front of Charlotte's Web. Chris is out in the garage doing his thing, Tatum is asleep and Leon, Ashley's and Rico's Dad is out on a pizza hunt for dinner and football...The kids are being incredible...Well I guess I should pack for tomorrow...Do you think that I need to bring a stroller? Baby Bjorn could work right...

If I Knew Then…

I think that I am just going to summarize from birth to now for everyone’s benefit as well as my own:

Feb 10 born 8:30 am via C-section
Went directly to NICU
Later on 2/10 on call heart Dr. informed us she needed to have co-arch surgery. They were going to transport Tatum on Monday
Feb 11 early evening
NICU doctor came to my room to tell me that they could not take care of Tatum any longer at Shady Grove due to lack of equipment so they vented her and transported her to INOVA
Feb 12 11am
Released me from Hospital so I could join Tatum at INOVA
Feb 13
Surgery- opens her up no co-arch tied off Ductess and closed her up
Feb 20 evening
Tatum was released from INOVA to come home for the first time

March saw some lame Genetic Doctor

After this roller coaster of a Feb. we saw the Cardiologist and Pediatrician every other week until June.

In June we did her first Cath. After the procedure I called my Pediatrician Office and made an appt with Dr. Desuza and decided to see her and Dr. Tesch exclusively. I felt we need a plan of action for Tatum. This has worked out great so far.
As far as the Cardiologist goes I was pretty comfortable at this time so we were just going with it. When we decided to go to Philly the Cardio Doc got a little put off and it all went downhill from there. I actually came back from CHOP still listening to my Doctors and not all that Dr Rome said. The funny thing about all of it is that we learned a huge bit of info from Dr. Rome in only one sentence, he said, “You are both aware that if Tatum’s aorta does not grow she is most likely not going to make it.”
Wow, huge huh... to bad our doctors never mentioned that…. I think subconsciously this was the first big red flag…after this it started raining red flags…. eye surgery situation and finally the firing 4 days before Christmas. I now look at the entire situation and just laugh. First of all CCA (old heart Doc) is a joke not only for what they did to us but for who they think that they are. I do not think that in my area a practice of any kind has a right to think that they are the best… especially when they are not...LOL

Yesterday we meet with Dr. Rosenbaum from DC Children’s Genetics department. He was AWESOME…he knew so much about WS and other kids I really wished we had seen him initially. I actually think that if we had a lot would have been different.
Dr. R. was very please when we told him that we were seeing Dr. Brenner later on for a Cardio Apt., he actually asked us to tell him hello…
Dr. B is the head of Pediatric Cardiology at Hopkins; he was wonderful and very knowledgeable about WS. He also has been communicating with me via email since I made the appointment…to think what I used to have to go through to get a hold of a doctor. Thankfully these days are over!

HMMMMMMMM What did we learn?…go with your gut and do not stay with the on-call practice because it is easiest…we should have started seeing Dr. Brenner in March. I remember the day I was told by Dr. Lindsay that Tatum needed surgery I said can I get a second opinion and she said yeah but you are in the hospital and do not have the time…. I should have let them do what they though was needed and upon release choose my own doctor…
Well no harm no foul and now I know!!! Sorry for such a long post. Yesterday was one of the best Dr. days ever and I cannot stress how happy and pleased I am with our new choices. Looks like a good start to 2007 :)

Bath Time Bliss

I was pretty excited today when Tatum's new bath ring came in the mail...I searched high and low for that thing...When all else fails you have to turn to eBay. Sure enough one week later we have one First Step new in box bath ring.

Bath time was great, both girls seemed to have a good time. I think they liked the novelty of bathing together. The girls played and splashed and and even let me clean and wash hair without to much drama...drama free baths with Emma is rare...That hair is out of hand...funny how the no more tears shampoo still cause tears...

Oh Christmas Tree

Well this may come as a shock to some of you but I wanted everyone to know that for the first time since we have owned a home we actually go our Christmas tree out in time for pick up. Yes folks this means come spring time I am not going to have a dead tree in my garage or on my patio. Don't laugh I am so not kidding...

2003 at our old townhouse we did not get a tree.I told Chris I refuse to get a tree while we still have the previous years tree in the backyard.

The tree stayed on the patio all winter,excuse being it kept getting covered in snow...Emma's First Christmas in 03 we did not get a tree, we already had one. LOL...That spring for Emma's baptism I tossed the tree over the fence to make our backyard look better, hehe one of our neighbors yelled at Scott for this...( Scott my Uncle and Neighbor at the time) Boy was he pissed at us. Eventually that summer we put the house on the market so I walked the tree up to the woods and dumped it. Yes it was that easy, we are slack!!! We moved into a rental for the Christmas of 04 while our current house was being built. We had already sold so we were in between houses...this ment no tree to deal with... Needless to say Christmas tree disposal is a on going joke at my house.

Last year I was so excited our first Christmas in our new home and my first tree in 2 years, I just knew it was going to be great. When the holiday was over we took down the tree and put it outside. Apparently we got our days a bit mixed because when we got home from work the tree was still sitting in the ally by the garage. That tree was in our garage until about a month ago! I told Chris this yr was his last chance get rid of the tree or no more real ones... I have to say I am very impressed Chris must really not want a fake tree. Best part about it I do not have a tree until next year...Oh the little things....

Really we are not totally crazy LOL

Calgon Take Me Away!!!!!

I have decided to officially admit that I am spread way to thin…Today I dropped the girls off at daycare…very early at that. Emma woke everyone up at 4:45 and would not stop talking so we all got up and got ready. They were at daycare by 7:10 LOL…

I headed to work and called the Doctors office to make an appt. for Emma, it hurts when she pees…went there at 1:30. I got back to work at 3… While I was at the doctor’s office it gave me the chance to pick up referrals for the month.

Tatum has two appointments on the 4 one at 9am with genetics, this apt was made in June, and the new Cardiologist apt. Sunday Tatum and I fly to Louisville KY to see doctors there on Monday. Monday afternoon after the apts we fly back home. On the 10 we have an eye Doctor apt downtown at Children’s and on Thursday Tate goes back to the primary Doc for a follow up and her synergist shot and 2 flu shot.

Oh yeah and incase you all are wondering I have not quit my job I am just learning to become multitasker of the year. I know it could be worse and I must sound like such a whiner but I am beat!!!

On a sad not Miss Dee had a Heart Attack on 12/22. Miss Dee is Emma’s daycare provider and has been since Emma was 6m old. I did speak to her today and she is doing much better but she is not sure that she’ll be back to work. The Doctors have told her to take it easy. I am a bit less attached to daycare with Miss Dee gone so I am thinking that it is time to really start the Nanny hunt.

If I do not get help soon I am really going to loose it. I did not even mention that Tatum still has therapy once a week and daycare is closed on the 12…my hair is coming out in clumps…is that stress related???

Cabin Fever

HAPPY NEW YEAR!!!!! Thanks for the good game WVU!!! Its is always nice when you get a good game and we win...Julie and Scott can breath easy...LOL ...
I hope every has a terrific 07.

I feel like I have been stuck in the house forever. We actually did manage to go to a neighbors last night for a few hours. We had a sitter come over about 10 after both girls were in bed. Emma was actually asleep by 8.

I am a little bit worried about work tomorrow but I am giving it a whirl. Chris and I both need to go tomorrow since Tatum was not permitting it last week. I just have this feeling that she is not going to make it all day at daycare. She does not have a fever but you can tell she is still not 100%. Her super runny nose, cough and the fact that all she wants to drink is apple pedilite is a dead give away. At least I know she is not getting dehydrated, but that poor bum I have never seen a diaper rash so bad in my life. I always worry that there is more going wrong in Tate then I know so I get extra worried when she is sick. I am ready for her to be better.

I also am betting that any day now we see teeth...her gums are on fire. She is chomping and every and anything she can get her hands on. Lucky for us Emma never leaves small toys on the floor. Yeah right we have tiny princess stuff all over the place...

Well we used to until today...Today I cleaned the toy room...I asked Emma to help but she really did not want any part of it. I had to explain that with this new year we are going to keep toys picked up or they are getting thrown out. After I started tossing her toys in the trash she decided it would be in her best interest to get involved in the toy room project. I have to admit it turned out pretty good. I bought this shelf thing with little bins in it from Target ,actually put it together too.We added that for more storage and I cleaned out the storage closet in the back of the room so we had a spot for big toys and chairs. She still has easy access to them so it is perfect. Chris hung a chain from the ceiling so we could hand all the stuffed animals and use the toy box for other toys. Hopefully this helps us keep that room a little more organized and avoid the absolute disaster area that it has become.

I also took down all my Christmas decorations and put them away, I guess being stuck inside is not always that bad I have had a semi productive few days. If I could channel this energy towards folding clothes I would really be in business... nah not feeling it.

Still Sick

Well I gave daycare a whirl yesterday...we lasted there all of 30 mins. They called to let me know that Tatum had a fever and we needed to come pick her up, about 5 mins after I got to work. Lucky for me Chris took care f it so I could get some work in. Today is a different story, I guess it is his turn to go to work. As pleasant as Tatum is sick the lack of sleep is killing me. Right now it is 3:45 am and she is rolling around and talking like it is morning time....UGGGGGGG when is it going to end I need sleep!!!

3 Man Band

Well today we have to take Tatum to the doctor in the morning, they want to check her out...Her fever is totally gone and has been since Sat. morning but the breathing is still bad. The nebulizer is a pain in the ass and unless Tatum is asleep she is not getting much out of it. Last night I did finally get Emma to sit long enough to do a treatment...I had to read the same book over like 5 times but I think that it was worth it, gee I wish Tatum would fall for that one.

Christmas was nice the girls got a ton of gifts, to my surprise Tatum is really enjoying this Hooke poke Elmo doll and this leapfrog animal doll thing. The Elmo is a funny little thing, we are thinking that tickle one may be good for her birthday and much easier to get by then. Emma enjoyed her new princess dress she wore it ALL day.We actually did not have a Bell dress so it was nice to add a new one in the mix. I love this picture of the girls "playing" together...too cute!!

The funniest part of the day came while we were at Angie and Joe's house for dinner. Tori, Emma's cousin, got a real electric guitar for Christmas. After dinner Emma and Tori found all the instrument's that were in the play room. Emma ended up with the girls old Barbie guitar while Tatum opted for a drum. I have to tell you this was the cutest band ever and Tatum was very amused. Lucky for us Emma got to bring the guitar home with her, she has already put her name on the back.

I'll be sure to update later after we see Dr. Desuza, I am hoping that she is well enough to go to daycare today but for some reason I am doubting it. Chris stayed home yesterday so I was able to get alot done but there is always more and missing a day at the end of the month is the pits.

UPDATE: Staying home with T today. Doc says she sounds so much better, keep up with the meds, and she'll see her next week...Daycare tomorrow for Miss Tatum :)

Change in Plans...

Well this year we are staying put for the holidays...We have put the house on lock down...Miss Tatum has decided to make her first Christmas a memorable one by coming down with pneumonia...I know lots of fun and great timing... She actually is much better today then yesterday. Her breathing is still very loud and awful sounding and her cough is way to big to come from something so little but today there is no fever. We went to the Pediatrician this morning to have her pulse/ox checked...This should be 100 yesterday it was in the 80's...After two nebulizer treatments we got it up to 95. This morning it was 94, not great but not bad either.

Today has been a beautiful day, upper 60's I would think. I did get to sit outside a bit and watch Emma play while Chris and Tatum took a nap. Emma loves to chalk draw on the patio and play in her little house out in the little back yard we have. Today with the help of Nestor, Emma drew a Christmas Tree... I wish the weather would stay like this :)

Well then again maybe it would be better if it were not so nice out...then I would stay in and finish wraping gifts...Time to nebulize :)

Merry Christmas

Well we are headed to DE to visit my Mom and Dad for Christmas and then coming home on Christmas Eve to be home Christmas morning. This is actually the first Christmas I have spent at my own house, and I have owned a home since '01. I can not tell you how much we are looking forward to it.

I have decided not to worry about the Doctor thing and not to waste time writing a dumb letter to a Board of Medicine. I did send the nurses in the office a apology letter for being "That Mom"... If I had to guess these ladies have no idea that the Dr. gave us the boot using them as a major part of the lame excuse. Oh well Child Cardiology Associates is just not the practice for us and it not nearly the practice that I at one time thought it was...how disappointing...

I have a appointment with a Doctor from Hopkins on Jan. 4, hopefully this well work out for us.

I was thinking that Oprah may need another email...She would love to hear about these nutty doctors....

Happy Holidays Everyone.....

STUNED

Today we went to the Cardiologist; our appointment was scheduled for 11:30. This was the first time that Chris had meet Dr. Shapiro…boy was that interesting…

We fist had the echo done, Tatum was great for that. Then we waited in the exam room for the Dr. While waiting one of the office workers gave up a huge bag of gifts for Tatum. There were at least 5 packages, I asked if they did that for all the kids and the reply was not just some of the special ones.

The Dr. finally came in after reviewing the Echo and began his examination. He made no mention to the prior situation and seemed a bit cold. He did not even shake Chris’ hand when I introduced him. He told us that there had been no real change in Tatum’s heart and the heart was not getting any thicker so for now it is best to leave well enough alone. He told us to be seen again in 2m…after that he promptly told us that we should find a new practice… I wish I could have seen my face when he said that and I wish all of you could have seen Chris…He told us we should trust our doctors and since I do not trust them and have a problem with one of the doctors in the practice that it would be best if we left. Oh yeah and I am “unpleasant” to the nurses…OK that is true, whatever, I have a great relationship with the nurses!!!

During the visit I did ask Dr S if he thought I was wrong to move the surgery for Tatum’s Eyes. His reply was no…I would also want to be someplace more prepared. Ok so hmmmmm I was right!!!!! He made no excuse or apologies for Dr. Lindsay’s lack of follow up or advice in this situation but instead penalized me for going against one of their Dr.’s advice…. Weird eh…. talk about a serious god complex. Chris thinks that the relationship with the office fell apart the day they found out we were going to Philly. They did not feel a 2nd opinion was needed and therefore never sent her file to the cardiologist at CHOP.

Chris and I had discussed seeing a new practice but did not really want to switch because Dr. Telep was already familiar with her. He is the Dr. that has preformed her Cath’s. Maybe we can still have him Cath her when needed…who knows. I have a friend who has a daughter Emma’s age with heart disease. Ella has already had 3 open-heart surgeries, Poor girl, not to worry Ella is doing great!!! Anyway we are going to start seeing her Doctor, maybe a healthy change is what we need, I guess we’ll see since the decision was made for us by some arrogant Dr. I can not believe this man wasted two hours of our time to tell us this…Chris actually voiced it to them along with a bunch of other stuff…

I think I am going to be writing a letter to the State Medical Board…That should be fun…I think I am actually still in shock…I have never been fired by a Doctors office before.

Its Official

I think that today marks the first day that I can actually say Tatum can sit up...She can not get into this position alone but once in it she sit for what seems forever. Today she actually sat up and ate a cookie...she figured out a way to suck down all the cookie part so at the end all she had left were the chocolate chips...Granted it was all over her but I must say I was impressed. She was a bit messy after the cookie so I started the bath..She sat up the whole time while waiting for the tube. Once Emma could sit up we used one of those bath rings in the tub for her and this time around I can not seem to find them anywhere. Did they stop making them?


Friday night was the Kids Daycare Christmas show. This is truly one of those moments that make being a parent worth it. I think that Emma's class was the cutest one up there. The babies just sit there with there teachers the next group gets a bit cuter but there is nothing like a good group of three year old's. Emma's classmates have all been together since before they were 1,well maybe not all of them but a good core group. Being around them is a treat, the kids play off each other in such a way the pure joy just pours from all of them. This is a picture of Emma group signing "This Little Light of Mine". Tatum's class did "Rudolph the red nose reindeer". Although very cute not the best...LOL...Oh yeah I don't even want to get into the Santa...He was a really good santa, real whiskers and all. He sat all the kids down in a circle and told them all a story. Then called them up to sit on his lap and recieve a little gift, These kids were in Heaven. The Santa looked like something right out of Saturday Night Live...Chris thought he was drunk but who knows...

Today Chris and Emma went to Breakfast with Santa at Whiskey Creek Country Club. Nestor, Ronell and Nathan also went, I am counting on Ronell for some cute pictures. While they did this Tatum and I went to Church. Today was the Sunday School Christmas program, and very cute. Tatum loved all the music. I wish Emma was as good in Church as Tatum was today. After the service they had cookies and punch for everyone. I was enjoying someone awesome CC cookie when suddenly a little hand grabbed it from me. Tatum decided it was her cookie and proceeded to hold on to it for dear life. The church service is held in the middle school just down the street from my house. We could actually walk if we wanted or had the time so you can imagine how short the drive is. I was driving home from church hoping that Tatum would not choke on the cookie in the back seat while I was driving the two min. drive home while also knowing I was going to have a mess on my hands. I got home and took her pictures before I got her in the tub. I think this actually brings this post full circle... :)

MUST WRAP GIFTS....I hate this part

Yeah For Blogger

Well I have done a bit of testing with the help of a friend and it appears that the comment glitch is fixed...Ok I can cross that off my list...

Beta Blogger Is For The Birds!!!!!

So I made the huge mistake of switching to Beta Blogger...Once I started it was to late to quit, oops...anyway I have email Blogger help and hopefully soon you should be able to leave comments again...I have no idea right now why it is only excepting anonymous comments... While looking at the blogger customer support topics I have noticed that I am not the only person having these issues so hopefully it well be fixed soon...I miss hearing from all my Moms :(

Pretty Lights...

Before reading this take into consideration that I grew up with white lights only and not many if any lights outside. I do remember a few years when Julie and I actually got colored lights on the tree but only because we had two trees...LOL This is the first year that we have ever put up lights, we have bought them a million times and just never put them up. I think it is different now because Emma is all about lights. What I really wanted was a snow globe blow up thing but there over $100, I did not want it that bad. We are just going to have to enjoy our neighbor on the corners house...They have Santa on a motorcycle, very cute.

I think living here you have to get into lights, I have really never seen anything like it. One house even has its own radio station... I am pretty sure as long as we live in this house we are going to have Christmas lights... I am taking bets as to when, if ever, Chris takes those lights down... :) He put them pretty high up.

We did get out tonight so I could show Em some of the lights. Lucky for me Emma liked the white lights better then the colored but she liked lots... way more then we have...and I actually thought I was outdoing myself...LOL

WOW this is the radio station house puts a entire new spin on gawdy eh. I bet there electric bill is sick. Once we got home from checking out the lights a Fire Engine drove by the house and guess who was on board...? Santa Clause, boy was Emma excited since we missed him at breakfast the other day...long story, basically we were late. Anyway Santa came up to the door and gave Emma a candy cane and let me snap a quick picture. I really do have to get her to the mall to see Santa...this has been a very cyber Christmas, to bad there is no cyber Santa for her to visit...HAHA

Although we missed seeing Santa on Sat. the breakfast was still very fun and we had a nice time visiting with friends. My opinion may be a bit tainted but I think the girls looked absolutely adorable...I can not figure out who talks more. I think Chris and I are doomed.

It's going around

Today I took Tatum and Emma to Tatum's eye apt. Her Dr. said she had a email a colleage of hers from Childrens in DC to Tatum's eye surgery. We are planning on this to be in January but no set date yet. Also the patch did its job and she does not have to wear it anymore. That is a good thing since she now takes it off herself about 20 mins. in.

After the apt was over I dropped the girls off and got to wk about 10. As soon as I arrived I got a message that the Dr. Lyndsay( Cardiology) had faxed the realese for Tatums surgery...Funny it was only a week late, and I no longer need it. When I returned the phone call to the nurse I cancelled my furture apt. with Dr. Lyndsay and made a new one with Dr. Shaperio. I am pretty pleased with my new change. I just do not think that Dr. L is the best match for us.

I only lasted at work untill 1:30, daycare called, aparently Tatum has the bug that is going around. She has had lots of poo and throw up...gross. I picked up both girls and headed home, gosh I sure do hope this is a 24 hour thing and Emma does not get it. Tatum actually seems to be bettter now hopefully that is a good sign.

Oh well now I am home, I guess tha is not all bad I am pretty tired from The football game yesterday. Chris and I went to the Redskins/Eagles game....What a great battle for the basement, LOL, atleast my team won!!! GO EAGLES...LOL It really was a great day for a football game, great seats and awesome weather.

Bettter run Tatum is pulling all the wipes out of the package...funny girl.

Kepping those Crossed Eyes

Today I decided that Tatum is not having eye surgery, at least not on Tuesday. The hospital that the surgery was scheduled is really not the best facility for Tatum. Although it is a fine hospital they are missing one very important thing that Tatum needs in case of emergency...A bypass machine. Without this they can not do open heart surgery in the event of a emergence. If something were to happen to Tatum during this procedure I would never forgive myself.....SO we wait.

I am a bit annoyed with my Cardiologist, she was not the best advocate for my baby...I can not figure her out she is super nice but nice is not always the answer. I am on the fence about finding a new practice...can you say confusion!!! Dr. Desuza ( Tatum and Emma's pediatrician) suggested maybe John Hopkins if I was interested, we'll see. Right now I know only one thing, I am sleeping much better tonight knowing that this eye surgery is postponed. Besides those eyes are adorable!!!

I just want to get through Christmas without medical worries...Tomorrow morning is our annual breakfast with Santa...I can not wait, I wonder what the girls are gonna think of the big guy in the red suit. I am betting that it is pretty interesting :)

AHHH DADADADADADA

Tatum is starting to babble and babble more everyday. She is making new strides by leaps and bounds, we are having so much fun watching her. The thing that kills me the most is I am starting to realize that Emma is not the only daddy's girl in the house. Yep you guessed it, Tatum too.

She just smiles the minute her Daddy looks at her and to top it all off this morning she looked at him and just started babbling "ahhhh Dadadadadad" now I know this is just babble but to him she said Dada lol... Men, to think they always want boys. I think that Chris would be lost without his girls.

Good Morning!!!

I ran into my friend Erika while dropping the girls off this morning and she informed me that I was a slacker and I am not blogging enough. So sorry everyone it has gotten a bit harder to blog lately with Christmas and a very mobile Tatum.

That little girl is all over the place she almost has mastered sitting and she has no problem getting from point a to point b by rolling…it is very cute. She is also verbalizing a lot more…my baby is getting big she is going to be all about eating wrapping paper at Christmas. It is her new favorite dish; funny I do not remember Emma eating paper like this one does.

I do have one great thing to report. Tatum slept all night!!!!! She usually gets up around 5 has a bottle and goes back to be till her morning number 2 (around 7) this morning she slept right through until she could sit in the diaper no longer…It was great and we actually got to work closer to on-time.

So who knows it could have just been a fluke but I’ll take it. She is such a good baby although she gave me a good run for my money for a while she is recently coming into her own. Now if we could just fix that little ticker. :)

Still a bit stressed about Tuesday but planning to call anesthesia again today to touch base. I should also be able to post a picture of the Christmas decorations this weekend, we still have a work in progress...The boss(Emma) says we need more lights...that girl, what are we going to do with her :)

This picture is one of the photo's we had taken at my sisters house. As my Mom calls it a generation picture. Julie and I with our girls and My Mom and Nana (Mom's Mom). I thought it turned out pretty good :)

End of The Road

Well there was fun all around to be found while we were in NY. The wedding was amazing and our friends all looked great. Fran made such a beautiful bride. We stayed with my friend Karen's (college Roomie) parents in NJ. Karen had a baby about 2.5m ago so I got to meet her and Ralph's beautiful little girl, she is a great baby. We all had so much fun. It truly was a beautiful wedding but expected nothing less from Fran :) This was the last in our little wedding series that we had going on this past fall/winter and I can honestly say we went out with a bang. I can not remember the last time I laughed so hard, we really need to spend more time with Karen and Ralph, they are great!

Tonight we are planning to decorate the Christmas tree that Emma and Chris bought last night, I am looking forward to it. We also have some decorations to put outside...I have no clue how this is going to turn out but I'll keep my fingers crossed... I have never done lights outside before, I usually make fun. How bad am I...well I am going all out and this year I am throwing the tacky word out the window and doing it up. Look out neighbors :)

9m Well Check Up

Tatum had her 9m well visit today...all is well she got a few shots as well as the synergy (SP)shot. That shot is the first in a series of 4 that are given over the next 4m.

Chris took Tatum this morning so I do not really have any details other then blood work has to be done (routine) and she is tipping the scales at 17.3...Maybe she'll hit 20 by her birthday so she can face forward in the car. I hope so that little task right there makes life so much easier.

My Mom and Brent are coming to watch the girls this weekend, Chris and I have a wedding to attend in NYC. This is the last of the crazy wedding burst we just had, thanks goodness. It should be pretty fun to get away and not think about anything. It is also going to be nice to get some uninterrupted sleep, LOL. It seem every time I leave the house these days it is way more trouble then it is worth...between packing for everyone and usually forgetting something. I do not have to pack for the girls this time but I do have to get everything in order for my Mom....

Well you all have a great weekend, hopefully I'll have some nice NY pics to post on Monday... There is nothing like the city all decorated for the Holidays

reality check

I read email last night before I went to bed, what I found certainly did not give me sweet dreams instead I wanted to throw up, I get that feeling still today when I think about it. A little boy from the WS email list went in two weeks ago for a cardio cath. The doctors wanted a better look at his aorta, it seems to have gotten smaller. Shortly after the start of the procedure his blood pressure dropped out, his heart stopped he was stabilized with the help of life support. The doctors decided to open him up and fix the aorta, although he breezed through that part, Gage's poor little heart stopped two more times. Sometime in the midst of everything he had a stroke, like all that other stuff was not enough. I cried when I replied back to Jessica ( Gage's Mom) via email. The weirdest thing was that I was telling Chris about Gage on Sat. night . . . We were watching some car show on the speed channel and Jay Leno was talking to a man named Gage . . .

I cannot imagine Gage or any one of these other babies I have gotten to know in this situation. When we left the hospital after Tatum was born I figured that was it no more hospitals. As I learned we would have more hospitals I figured it would never get that bad again. So far we have been lucky . . . those few tubes and wires used for the cath is nothing compared to what I have seen Tatum hooked up to, I know many other parents have been there too. It is something you just don't wish on anyone . . .

As we get ready for Tatum's eye surgery, I am sure I'll be very relaxed . . . as if we were not torn about it to begin with . . . yeah right . . . I am doing my best not to think about it. It is something that needs to be done and now is as good of time as any.

Tatum has some unique heart problems. Most of her vessels are smaller but the main issues seem to be the stenosis of her entire descending aorta . . . The stenosis in the branch pulmonary arteries are not so good either but they at least started growing. The cardiologist from CHOP pretty much agreed with the current care that Tatum is receiving. He phrased his input a bit differently so it would seem different but smoke and screens . . . I am onto it and over it. Bottom line is Tatum's aorta has to grow. Until then there is nothing they can do but monitor by echo and caths intervening when necessary.

I have decided that while we wait for growth I am taking this unique heart problem on the road . . . Dr. Mervis has helped put me in contact with Dr.Morris. I have shared with her Tatum’s heart records in hopes that she may have seen her heart problems before or know a doctor that has. Dr. Morris has been researching and working with WS for many many years.

Gosh I have been so busy I forgot how nice it is to just sit down and type...Kind of sorts everything out...Hope everyone has a good Wed.