Lazy Sunday's

This was a very uneventful weekend it was much to hot to do anything even go to the pool. I did not want to take Tatum out because it was so hot on Saturday so we all just stayed inside. Emma helped to tried to help me do laundry, to bad she does not help fold yet.:)

Sunday I had to get out of the house so I would not go stir crazy. Emma and I ran down to the mall, she needed new sneakers and we wanted to go to the Disney Store. After a small spending spree at Disney we headed to Starbucks, I got my regular drink and Emma got a banana's and cream frozen drink. We sat in the food court and shared a piece of cake and drank our drinks. Emma was acting very grown up. After our snake we went to the shoe store for new sneaks...

Buying shoes with Emma was a big eye opener. First of all There is no picking shoes out for Emma atleast not if you want her to wear them. So with that being said Emma picked out her very own hot pink and white poka dot Chuck Taylor high tops, LOL...It is official there is no was that Emma is not my child.

Once Home from the mall Chris decided it was his turn to get out so Emma and Chris got ready to go to the pool. Since it was so hot I decided that it was still to hot and Tataum should not go. While Chris and Em were at the pool Tatum and I went to my friend Jody's house. She lives close to the pool so Chris and Emma could just walk to her house when they were done.

Mojitos were flowing on this hot Sunday afternoon...It was actually starting to cool off so we went outside on the porch to sip on our yummy drinks. Tatum stayed inside with all the kids. Jody's girls just love taking care and feeding Tatum.

It was so nice to visit with friends I feel like I had not been able to do that in a while. Sure I just went to the beach with a friend but this was different. It was good conversation and actually I do not think that the term Williams Syndrome came up one time. Although it seems that WS is a major factor in our lives these days I can not tell you enough how refreshing it was to enjoy a few drinks and just forget.

Jody's girls had not seen Tatum in a few weeks so to them she looked like she had gotten bigger and changed so much they were all so pleased to play with her and she seemed happy to be visiting as well. Tatum is really starting to come into her own so she is much more fun then she used to be. She actually tries to play now.

Eventually Emma and Chris came over from the pool. We ordered pizza for dinner and watched the kids perform the a music show that they made up...So funny...
They were running around in a strobe light playing recorders. Look out Hollywood her comes Emma, Fiona and Ferris!!! What rock stars these kids are.

After the concert we started to wrap things up. It was almost nine and Emma still had to have her bath. It turned out to be such a nice Sunday afternoon and very much needed.

Am I doing everything I can?

I think that this is a question that I may never stop asking myself. As a parent I only want the best for both of my children, it just seems much easier to figure out what is best for Emma as opposed to Tatum. Sometime I just sit and question myself should I have a second opinion? Am I over reacting? Should she see other Doctors? When should she start these other appts.? Is her electrolytes being checked often enough?

There are so many things common in WS children and I really do not know what Tatum has or doesn't have aside from her heart problems. I have decided to make her an appt at CHOP's WS clinic, and I am speaking to her pediatrician about making a eye doctor appointment for her. I think her eyes are fine but who knows. I just wish she came with instructions. Something titled, Hi Mom I have special needs but follow this book and we'll be fine, that would be perfect.

The heart problems really put me on edge part of me wants it fixed now and the rest of me thinks CHILL OUT LISA your doctors are the best in the area and they know what is best for her. This year is going to be a great learning experience for me since I am not so patient in these areas and I am not so fond of surprises. I would much rather know what is going on and the solution. Instead I hear that there is nothing fixable by surgery atleast not in one shot.

I look at Tatum and for such a little thing she is accomplishing so much. Just the other day I picked her up from daycare and they showed me how she slides like a slug right off the blanket across the floor,( at slug speed too :)) I was very impressed. The OT and PT ladies always say how hard she is working and how much determination that she shows, these are all good signs right? Then I watch her drink a bottle and break out in to sweat, ERRR such a catch 22.

She is becoming such a pleasant baby she smiles and talk's to you and loves it when you talk to her, so cute. She even gives kisses, sort of...She leans toward you with an open mouth. It's a start I know. She is just so tiny sometimes I wonder if she is ever going to grow. For now most people just comment on her hair and not her size, they all just assume that she was a preemie not a full term 7.14 baby girl.

Ok I'll stop complaining and be thankful for my two beautiful girls and loving husband, but sometimes you just have to vent.

Little Cinderella's

I wanted to share these two pictures with everyone...

MRI RESULTS

The Doctor left me a message saying that there has been some interval growth but mainly in her aorta. The pulmonary arteries are still very small. Due to her slow down in weight gain, heavy breathing and constant sweat, the Dr. Wants to go over the results with her colleagues. Together they well come up with a recommendation as to how soon she goes back to the cath lab and how often she'll be there. The Cath well also include angioplasty. So we still wait....

Nothing Like The Beach

I must say that going to the beach seems to be great therapy for me. I think it is something in the ocean air combined with a feeling of home. Rehoboth Beach is such a special place for me. When Julie and I were little my Mom would take us there 2-3 times a week in the summer, she was a teacher so we all had the summer off. We would get up very early, we had to get there by 9am at the latest in order to park on a street with no parking meters. The 45min car ride always seemed to never end but eventually we would get there and have the best day. My Mom would sit and read her book while watching us play in the waves. It was very sweet to see my Mom doing the same thing with her Grandkids.

Although it rained alot while we were down there we still had a great time. Friday was beautiful we went down on the beach when we got there. Emma had a blast with her friends Alex and "Baby Gabrielle". Tatum, well I think it was a little to hot for her on the beach but she was certainly a trooper. When we woke up on Saturday it was raining so we went shopping. Tatum was actually great for that trip but it was much cooler and there was a great breeze.
About 3 it started to clear up and the girls wanted to go to the pool. The pool was great because it was right on the boardwalk. Emma had a blast playing in the pool with Grammy. I just can not tell you how impressed I am with Emma's swimming ability. After a while at the pool Tatum woke up from her nap and Miss Kay ( the babysitter, she is awesome) brought her down to the pool. She had fun visiting with her "Pa", my Mom's husband. They were all so cute together.
Our friends that went with us on this crazy girls weekend were making there first trip to Rehoboth and the girls first time to the ocean. I think Alex liked the pool better. I know they had a good time because they are going back as a family in Sept.
Good food, perfect hotel and ocean air ahh how great even in the rain. The one bad thing is I am exhausted even though Tatum slept till 7am Sunday morning, yes she slept all night, it was not enough. I literally think I could sleep for a week. Does that feeling ever go away???

As far as the MRI goes I STILL have not heard the. I called Friday from the beach and they said they did not know anything yet...I called today to leave my work number for them to call me. Kinda funny there are no results yet since the MRI Tech said it was available immediately in the computer system and a written report would be generated in about 8 hours... HUMMMM...Looks like I am going to have to turn into super pest. I hate doing that!! As soon as I get results from The MRI I'll post something :)

No news is good news...

We made it back from the MRI alright. It did not take as long as they told us. The Dr. said it would be atleast 2 hours it is always hard to estimate when a IV is involved. So the MRI was schdudled for 10am and it actually started at 10am. It was over by 11:30.

Tatum did so well, Chris held her when they put her under since only one could go in. I thought it would be good for him to see how they do it.
I saw Emma get put under once when she had her adnoids out so I already knew the drill. Oh do I hate my babies going under!!!!

The nurse told us Tatum woke right up. We meet her in the recovery room she chugged a bottle I changed her clothes an diaper and we left. We do have the film from the MRI on disc but I can not read it. Oh well I guess I just have to wait for "The call".
If I do not here later tonight I guess I pick up my harresment tomorrow bright and early...

DRUM ROLL PLEASE...

I do want to give a little shout out to a new friend of Tatum's. This is Avery, she is 16m's now. Avery has had a very big summer so far. On top of making new friends, Miss Avery has recently started to crawl and just as impressive she is weighing in at a wopping 17lbs an 11oz. Go Avery you are getting so big :)You and your Mom are very special to us. :)


We'll we are off to the beach for a long weekend. Hope Tatum loves it!!!

God does not give you more then you can handel...

I can not tell you how many times I have heard this over the past 5 months, honestly, it truly gets old. Maybe he does not give you more then you can handel but he sure knows how to push you to the limit. As I mentally prepare myself for Tatums MRI I have so many things that run through my head. I know that a MRI is not evasive but they still put her under and that is always a risk especially when there are heart issues involved. Not just today but lots I wonder the worst...

WHAT IF...What if something terrible happens, how do I explain that to Emma as well as deal with it myself...What if they find more problems? What if she does not out grow out of the stenosis? My what if's can go on and on.

I am not so good at expression through writting so I think I look to poems and now my other friends that have blogs. While googling around ( I love Google) I came across yet another beautiful poem that I wanted to share. Although it seems with everyday I am more at peace with Tatum's DX I still wonder how I am going to make it through the next few years without have a mental break down of my own. Boy are my friends sure in for a ride.

ANYWAY...THE POEM...

THE BATTLE
by Linda Jackson

As I look around this table, at the faces I see around it
They remind me of knights, battle weary with dented armor,
which tells a dreadful tale.
We fight against those who would simply label our children and walk away.
We fight and demand the services they need.
We fight and struggle with them day by day,
hoping and praying not another hospital stay
Doctors with new medications, will this one fail or succeed?
We fight to save the children who have no affliction,
but believe they are forgotten.
They see this battle with Mental Illness
They see on you it takes its toll
They see you fight to save this child's life and soul
They rest assured that you would do no less if it were them.
They know all too well how exhausted and drained you are
when each battle is done.
As well all look forward to the day when this war is won.
Hear me, so that you may know your reward may not come in this life,
But your deeds are well documented by your Father in Heaven.
For you see, He knew long before your birth what trials you would go through,
And had He not known the strength of character and spirit
He placed within your body
He would not have placed this cup before you.

A Very Nice Weekend

I am taking the girls to the beach on Friday for a girls weekend. I do not know who s luckier Chris because he gets a quiet weekend alone or me because it's the beach I have a great room and a babysitter coming HA. I think I deserve it. Anyway since Chris gets a ton of alone time next weekend he got tons of Tatum and Emma time this weekend.

Saturday after naps Julie brought baby Molly over. She is so cute, Emma loved having two babies around. She kept telling Julie "This is my baby (pointing at Tatum) and that (pointing to Molly)is your baby. After we all ate yummy Olive Garden carryout (the best way to go out to dinner with babies)
we tried to get a picture of the two babies together.Hurrican Emma was not so happy not being part, so Chris dropped her in... Tatum did not like that so much. It was great to see Julie and Molly. Julie looked great and Molly is getting so big...

Sunday Emma and I got up and went to the pool as soon as it opened. Yeah a pool day to ourselves!!! We meet my friend Lauren and her daughter Gabrilla. The girls had so much fun, they play great together.It was a bit weird being at the pool just with Emma, I had forgotten how easy she is. We were the envy of the Moms in the shallow in, Emma is a very independent girl and not to shabby of a swimmer. Everyone always asks how we taught her to swim so well already. The girl spent from October to May in swimming lessons. I wanted her to be fairly confident in the water before Tatum came, I guess we succeeded. I am sure it also has to do with the fact that she can touch the bottom all the way to the rope in the small end too.. Emma fell asleep on the way home from the pool and when she woke up from her nap she was surprised by "Ma" and "Granpa" ( Chris Mom and Step Father) they came and picked her up for a visit at their house. We are Emmaless until Tuesday night. You would not believe how quiet the house is.
With Emma gone Chris and I got to get Dinner together. YUM YUM CRABS I love them and Tatum slept the entire time, we could not have planned that better if we had tried.

This Morning Tatum had her OT. Wow it is amazing how much better she does without Emma around! They were very impressed with our little angel. No one can believe how much better her tone has gotten, that girl is all over the place!!! she really makes me smile how well she does when the ladies come over to work with her.
I guess this week is just going to be a emotional prep for Thursday's MRI. I'll be sure to keep everyone posted.

Update

This morning we went to the cardiology for a EKG...Tatum was so calm and did great. Her MRI is set up for Thursday. The MRI should tell us how soon it is going to be before she has another Cath to balloon her pulmonary arteries. Her main problem right now is the blood flow to her lungs.

On a lighter note Miss Tatum has gained 6.5oz in 11 days, I was pretty impressed. So I guess we are moving right along now we are up to 10.6 1/2 yipeeee....It is official no more 0-3 month clothes :)

Special Mothers

THE SPECIAL MOTHER
Written by Erma Bombeck Published in the Today Newspaper Sept. 4th, 1993



Most women become mothers by accident, some by choice, a few by social pressures, and a couple by habit. This year, nearly 100,000 women will become mothers of disabled children. Did you ever wonder how mothers of disabled children are chosen?

Somehow, I visualize God hovering over Earth selecting His instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger:

"Armstrong, Beth, son. Patron saint, Matthew."

"Forest, Marjorie, daughter. Patron saint, Cecilia."

"Rutledge, Carrie, twins. Patron saintÂ…give her Gerald. He's used to profanity."

Finally, He passes a name to an angel and smiles. "Give her a disabled child."

The angel is curious. "Why this one, God? She's so happy."

"Exactly," smiles God. "Could I give a disabled child to a mother who does not know laughter? That would be cruel."

"But does she have patience?" asks the angel.

"I don't want her to have too much patience, or she will drown in a sea of self-pity and despair. Once the shock and resentment wear off, she'll handle it."

"I watched her today. She has that sense of self and independence that are so rare and so necessary in a mother. You see, the child I'm going to give her has his own world. She has to make it live in her world and that's not going to be easy."

"But Lord, I don't think she even believes in you."

God smiles, "No matter, I can fix that. This one is perfect. She has just enough selfishness."

The angel gasps. "Selfishness? Is that a virtue?"

God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied."

"She will never take for granted a spoken word. She will never consider a step ordinary.

When her child says "Momma" for the first time, she will be witness to a miracle and know it. When she describes a tree or a sunset to her blind child, she will see it as few people ever see my creations."

"I will permit her to see clearly the things I see – ignorance, cruelty, prejudice – and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side."

"And what about her patron saint?" asks the angel, his pen poised in mid-air.

God smiles. "A mirror will suffice."



I have meet the most incredibleble Mothers on line going through the same things I am. Last night after the kids were in bed I ran across this poem and wanted to share it with everyone that reads my blog.

I felt better after reading this. I know there are going to be lots of rough and sad days and thank you to everyone that listens to me ( all my friends not just the new ones), you know what we are all going to be ok and our kids are so lucky to have us. I love and admire all of you.

SAY CHEESE.....

OK now I know that I said she has been smiling since the begining of June But I think yesterday it was made official....This is by far the biggest smile I have seen. It made my day yesterday...:)

SISTERS

"As close as you may have been growing up together was not always easy. Sometimes it seemed there was no space or time or attention that wasn't always hers. Whether by choice or under protest,you shared,split and divided everything until it became so ingrained that, to this day you still find yourself doing something like flipping the pickle that comes with your sandwich onto her plate because, well, you always have."

We still share what we do not want on our Plates when we are together. Hum I think Emma is going to get the good side of that deal...

Being a sister is one of the greatest gifts given to me. How lucky for me that I could give that gift to Emma and Tatum. It is the best way in the world to lean about loyalty and fairness. I look at my girls and think and wonder how different the relationship they'll have, is going to differ from the one I share with Julie(my sister). I am afraid that Emma is not going to be able to have a "regular" relationship with Tatum, on the other hand she is going to only know one way, Tatum. Even though Tatum is "different" then a "normal " child a sister is a sister, the bond there is one of a kind. If the girls go on that there well be a friendship there to last a lifetime and a support system that never fails.

I know my sister and I fought when we were younger and still argue sometimes but that is the great thing about sisters you can fight with them and cry with them and confide in them and it never changes. We formed a bond without even knowing or even wanting to. If you asked us when we were younger if we were close the answer would have been "NO!". Looking back how untrue this was we have always been close. The trips we took as kids the time we spent at the beach and West Virgina every year created memories that are never replaceable. I am Glad that Julie and I have remained close and I know we always well be.

I see Emma at this young age give so much love to Tatum. She is very protective of her and always looking out for her. She call her " Sweetie" and "Little Mama" it is really very funny and so cute. We are not to sharing toys yet but you can't have everything at once. Emma is the only one that can take toys away from Tate and get away with it, in Emma's eyes anyway. The two girls have such a adventure ahead of them I hope they embrace it.

Julie recently gave birth to a little girl, baby Molly. Molly is beautiful and I could not be more happy for my sister and her husband. Funny how it seems so bitter sweet to me. I know it is going to be a little hard to watch her grow and flourish like a "normal" healthy baby does while Tatum struggles to do everything. I know it is a phase and I'll get passed but I feel like maybe I am a little entitled to have these feelings.

Julie promised me a few months ago that our girls would grow up together and always be close. I truly look forward to this, between Emma and Molly little Tatum is always going to be protected. I have a feeling that these girls are going to be more like sisters then cousins. Julie and I did not grow up with cousins close enough to visit often and on my Dad's side of the family we did not have a cousin until Maddie yes Emma and Tatum's cousin Maddie. We sure waited a while for that one, and so very worth the wait.



You know I am not even sure where I am going with this, other then what a honor it is to be a sister. Julie is a great sister I hope my girls turn out to be as good as there Aunt.

"No matter who you've become, your sister knows where you began, how it all started. She may be the only person who has the ability to recount every good, great, or stupid thing you've ever done. She understands the girl inside the grown- up woman you are today and that is no small thing."

The quotes are from a hallmark book that Julie got for me last year called, "What Sisters Share" by Jennifer Fujita.

Thanks Julie, I love you :)

WE MADE IT TO 10LBS

...

We may be celebrating this milestone again with each different scale but our scale at home and the cardio office all say 10. Way to go Tate!!!

I have been off work since Friday,what a much needed break. Although miss Tatum has not allowed much sleep we seemed to have made it through. It is kinda funny it seems Emma has been ending up in our room at night so we all just grab a spot, somehow by morning Tatum and I end up asleep on the couch in our bedroom. I actually found Emma Asleep on the floor next to the bed on Sat. Night. I guess night time is a on going battle for any parent for while. Just when everything is great POW a new phase starts. Well with all the lack of sleep you would think we would want naps a down time. Not the case we were a bunch of pool bums all weekend, even little Tatum. I am hoping that by the end of the summer I am going to have to brown bears that love the sun beach and pool as much as there Mom, I know Emma does so we are pulling for Tatum so far so good. :)

Monday morning early Tatum and I headed out for the cardiologist. That seems to have become our home away from home. Like usually they could not get much from the echo although Tatum for once was pretty calm. The Dr. Decided that a MRI was what they want to do next. They figured if they are going to sedate her they might as well get the most information possible out of it. We should find out sometime this week when they are scdudling the MRI. They can not get the best look at her pulmonary arteries from a echo and they are curious to see what is going on there.

The slow weight gain is also becoming a concern, although typical of WS 5 ozs in one month is not really that great of a weight gain. As far as I am concerned as long as she gains it is ok. I do not know what else more we can do, Chris and I feed her as much as she can eat, poor little thing. Although small Tatum continues to do well at her own pace that I do not think is really that far behind.

This past weekend Tatum rolled from her belly to her back continuing her month of 1st right into July. I can actually say now that she has complete head control. That is really nice.

Both Girls just seem to be doing well. Emma is getting more loving and beautiful with Everyday. This weekend she played so nicely with friends actually putting them first coming to their defense when other kids at the pool took there toys and most of all being a very big protector of her little sister. It was very cute to watch. Now if I could only teach her to not pick baby up by herself :)I have a very refreshed feeling going into this week, thank goodness it is a short one;) I said refreshed not well rested hahaha .

It should be nice our Patio is being built starting tomorrow I can not wait to see the end result.
Happy hump day everyone nice to start the work week on Wed. eh;).