Thursday, February 11, 2010

The long and short of it ....






This will most likely be a no frills post as I am absolutely fried.Like .. stick a fork in me I am done.As in, just ask my husband, who walked in the door at 8:45 pm and had his head practically taken off before he hit the threshold.

Yep,it's been one of those weeks.Cannot believe it is Friday already.Jam packed every single minute, of every single day.Let's start with the littlest love.She had two of her three big appointments this week.Neurology and cardiology.Neurology is the only service we see that isn't at Children's.We go to UCLA because one of the most renowned experts on Infantile Spasms,is there.Dr.Donald Shields.I love this man.Brilliant and caring and in love with Zoey.He spent so much time just looking at her and marveling at her progress.Progress due solely to a drug that wasn't expected to work after she failed on the 2 front line drugs.The bottom line is that we are going to actually go UP on her seizure medication.I was a bit surprised,as he had entertained weaning her way back in June.His thought process is this:Not only does she have Down syndrome,which puts her at an increase risk for IS but her stroke site and subsequent damage, makes it all the harder to predict the potential for return.He also does not feel comfortable and confident enough that she has passed,age wise, the danger zone of her Infantile Spasms returning.And if they did and more importantly,if the hypsarrhythmia returned,then not only would that be catastrophic to her cognitive and physical progress thus far,it would impact significantly any future development.Another huge factor that he mentioned and that weighed heavily in his decision making process was that regaining seizure control the second time around, if they reoccurred,was much more difficult.So,that was all I needed to hear.The thought of returning to that dark time was enough to make me throw up.Literally.So up the dose we did.We will revisit things in 6 months.

As for cardiology,wow,that was a day.Lets just say,I am not looking forward to our next sedated echo cardiogram 6 months from now.First, my child fought the sedation.Big time.Finally gave in and we got the pictures we needed,then the fun began.As she came out of the sedation,Chloral Hydrate,she was ticked.Like screaming ticked.Screaming ticked for an hour an a half.In a tiny waiting room.Fun times.Nothing would soothe her or distract her.The good news and the most important thing, was that her heart looks perfect again.I say again because after her AV repair,which we call her "second birthday",her heart was perfect.Perfect fix on a larger then normal defect with no leakage.But after we fought Infantile Spasms with ACTH,her little heart developed Cardiomyopathy,specifically the thickening of her septal wall,the muscle of the heart that separates the right and left side of the heart from each other.We were devastated.But through time and even through chemo,our mighty fighters heart shows it is even smaller then it was after surgery.Phenomenal news.

Next up,Oncology 2 month lab check on Monday the 15th.That one is the one that I need to garner peace and strength for.It never is an easy one and in some ways,as we get time and distance from diagnosis,these draws become even harder.So chances are,as Sunday evening arrives,my family will find me sighing deeply,with them asking whats wrong,with me saying nothing and all of us knowing that is a lie.Anxiety stinks.

Another medical update but surprise,surprise,not Zoey but instead my oldest little love,Jessica.Seems that my athlete extrordinaire,has managed to tear a muscle in her hip.Say what?Yes,a muscle in her hip.Fairly rare injury which will sideline her from physical activity for a while.Which is killing her.But she has to be pain free before she gets back at anything and in addition to the tear she has bursitus in her hips.23 and falling apart already.Poor girl.

That's all for tonight.I hear my bed calling my name.Screaming in fact.

Thought I would post a few pictures from our quick trip to San Diego the Sunday before last.We had a great whirlwind trip.Charlotte is getting so big.7 months already.She is giggly and engaging and sitting like a big girl and drinking from a cup and eating like a little piglet.Wish she would teach her Auntie Zoey a thing or two!

18 comments:

Claudia said...

wow, super cute pictures! Have a good sleep, my friend!

stephanie said...

All those appointments back to back, no wonder you're fried!

It's over and Zoey's good. Monday will come and with it support and love and prayers from all of us.

We walk beside you(via cyberspace).

Charlie is too gorgeous for words. And so sorry for Jess! i have to admit I've never heard of a pulled hip muscle. considering all the hip does I can only imagine the pain. Praying for a speedy recovery.
Love and hugs, friend!!

Anonymous said...

Wow What a week! Thank you for posting, we all (here on East Coast) were sitting on the ends of our chairs, asking have you heard from California. This was our final thoughts last evening as I spoke with your mom Mark - Well, if no one has called, it is a good sign, means things were not hugely bad, just busy! and yes - your posting confirms our thoughts.

First off - Jessica I am so sorry about your injury, I can just image your not being able to be your atletic self must be yucky! Hang in there girl - it will get better,,,,

Secondly, laughed right out loud looking at Charlie's photo - too cute for words. Great family photo (partial family). And of course Miss Z - always a plus!!

And thirdly - and perhaps the biggest positive thing, it sounds like your doctor visits were stressful altho had a positiver spin on then. Yes I was taken back when I read that Zoey's meds to be increased, but as her doctopr is tops in his field - you must be confident in his new med - amazing to say the least

I do hope you have a settling weekend there in your home - and Monday's trip will have good results for Zoey and everyone.

Thanks for posting Heather. We all (me- multiple times) check for new words each day.

Have an awesome weekend Needham family!

Aunt Bluebelle

Anna said...

I am so glad to see a post from you on here! I was concerend and hoping all was well. I know how hard it must be to be the "mommy person" through all of this. I wish I were there to take some of the load off. The pics are great and I just love little Charlie! The one with Zoe and the daddy person is phenom too........ {hugs}

Dawson said...

Great news on the Dr visits!! Hate the process of getting good news has to be so bad sometimes. She just looks fantastic!!

Please please give her a hug from her fans her in Alabama

Much love to you guys

The VW's said...

Hope that you got a great night's sleep and that today brings a sense of peace!

Glad to hear that Zoey's heart is doing fantastic! What a blessing! BTW, why do they sedate her for this? Gavin is always awake for his echo. He squirms a little, but usually ends up falling asleep because the room is dark and quiet. Poor Miss Zoey! Sorry she woke up so distressed!

CUTE, CUTE Pictures of your family!!!

Praying that Monday brings great news and another day of peace and celebration for you guys! Love, Hugs and Prayers!!!

Mary said...

I keep Zoey in my prayers all the time. She is so precious. Of course, I always love seeing pictures!

Tina said...

That sounds like a hectic week, but when the end results all sound so good, its definitely worth it. I am sure Monday will be a good day as well...
Love the pictures, seems all of you had a great time. Zoey seems really taken up with all the fish, what fun!

tish said...

Yes, my Zoey's heart is perfect. I could have told you that, my friend! What remarkable news you received, just in time for Valentine's Day. :)

We'll be thinking of you on Monday, Heather, with good thoughts and fervent prayers to lessen that horrible, inevitable anxiety.

Miss Zoey's niece, Charlotte, is so beautiful... but, truthfully, I'm not surprised as it runs in the family! Tell Jess we are thinking of her and we hope she feels better real soon.

Wishing the Needhams a weekend full of LOVE.

Peter Olson said...

Love those pictures! Beautiful family, smiles, fun times
Praying that Jessica heals up and gets back to it.
Praying for peace for you and great oncology news next week.
Have a Great weekend! Happy Valentines Day!

Lacey said...

That last picture made me laugh! Of course Joe has bare feet! Him and Carter are like two peas in a pod!

Bea Braun said...

What a week full of treasure!!! I am so relieved the neuro did not take her off her med. When you wrote last I was actually nervous! She's making such incredible progress. Great heart, yeah, that chloral hydrate is so unpredictable. And little Charlie sooooo cute. Great pictures of everybody. Jessica's got youth on her side, she'll be bouncing around before you know it. Little harder when you get older :)

Taylor said...

Can I just say that I love that bottom picture? Zoey's face is absolutely priceless.

Denise said...

Boy, you must be tired for you to not have a lot to say (although I think you ended up doing a lot more than you originally thought you would). I love the pictures from SD. Next time tell me when you are down and we will come join you. I am glad that all your appointments went well and I am sure that the hematology one will be just as good. Can't wait to see you guys....really soon!!!

Googsmom said...

{{{{{HUGS}}}}}

Cheri said...

Oh Heather, that was a big heart gripping week. You have every right to be "put a fork in me done" ...you were almost going to be "put a fork in me done...with busted chops" until I read that you were at the San Diego aquarium rather than "an arms reach away from me aquarium". Let's put a date on our calendar this week to get together before Feb. is over.

Michelle said...

Love love reading your blog and keeping up with your beautiful girl,Zoey! I was hoping that you could stop by my friend's site and give her some encouragement since she recently gave birth to a lovely baby girl with DS. It was a complete surprise at delivery. She is a wonderful photographer too and has documented the birth with photos. She also wrote a very beautiful and heartwrenching birth story about finding out for the first time that her daughter has DS.

Here is her link:

http://tinyurl.com/ylnnraw

almcl said...

LOVE, LOVE all the pics, but especially the one with Zoey & Mark. Obviously, daddy's little girl. :)