Tuesday, January 30, 2007
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????
Monday, January 29, 2007
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.....
Friday, January 26, 2007
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???
Wednesday, January 24, 2007
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;)
Tuesday, January 23, 2007
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.
Saturday, January 20, 2007
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.
Friday, January 19, 2007
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.
Thursday, January 18, 2007
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!!!!!
Wednesday, January 17, 2007
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…
Tuesday, January 16, 2007
I have a Nanny lead...I have to call her back today...maybe this well work out, who knows
Monday, January 15, 2007
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.
Sunday, January 14, 2007
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
Tuesday, January 09, 2007
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.
Saturday, January 06, 2007
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...
Friday, January 05, 2007
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
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 :)
Wednesday, January 03, 2007
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...
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
Tuesday, January 02, 2007
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???
Monday, January 01, 2007
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.