Saturday, September 19, 2009

I'm Not an Alarmist,Really I'm Not ...

Neither is our pediatrician.Who I might add,is absolutely the best of the best.At least in our eyes, as well as a whole lot of other people's,if you were just to mention his name.We were so blessed to have had him long before Zoey made her grand entrance into our lives and I truly feel that we were led to him,long ago ,with the knowledge that Zoey would be coming our way.He is basically a one man show,which is practically unheard of now a days.He does have a partner who comes in 1 day a week so he can head over to a CCS satellite school,which is a facility and state run program,whose sole purpose is to provide services for children with varying levels of disabilities and diseases.What were the chances,that way back when,I would land in a practice that would have the only doctor in the county, affiliated with CCS or one who additionally had a plethora of resources geared strictly towards a child like Zoey?Not likely but we have him and we are beyond lucky.His heart is rooted deep with his special needs kids.Not that he doesn't adore the "typical" sect because he so does but his bond with these other children, is unparalleled.I will never ever forget,the evening that Zoey was airlifted,6 hours after her birth,him coming and sitting with me at the foot of my hospital bed,not as my child's doctor but as my friend.It was just one of those moments in your life that is etched so clearly and vividly and although few words were exchanged,his face spoke volumes.Anyway,as you can tell,I love this man and he loves us and as for Miss Zoey,well,he always,always has her very best interest at heart.That is why he is putting her on lock down for the ENTIRE winter.No joke.That freedom we have been soaking in has come to a very abrupt halt.Screeching in fact.We are to go NOWHERE with her.Stores of any kind,the kids schools,church and most especially HIS office ... the list goes on.This flu season is projected to be a doozy.Especially the H1N1/Swine.This is no histrionics,over-reacting,falsely projecting ... this is fact.On paper,fact.The scary component to those facts, are that children such as Zoey and all others like her,one's with underlying medical conditions,compromised immune systems,neuro-developmental delays(cerebral palsy,developmental delays etc ..) are at a disproportionate risk for death.Almost two-thirds of the children who have died from H1N1/swine flu had immune suppression issues, epilepsy, cerebral palsy, or other neuro-developmental conditions.Last time I checked ... Zoey is three for three in that data.The reality of the potential high stakes came in late July when we lost 2 little guys on the 4th floor,due to complications from the H1N1.They both had Down syndrome.Heartbreaking.So, no media hype here.You can in fact read this from the CDC if you need corroboration.I don't.All I need is my pediatrician,who I trust implicitly with my children's lives to tell me so and I know it's so.So that new found freedom,since ending chemo,has just been pulled back.Big time.Frustrating yes.The alternative however is down right terrifying.We are,as it is, major germ-a-phobics here and we now have to step that up 1000%.Especially with our households size and the contact they all have with the outside world.The boys alone,being in school is enough to put us on high alert.Add the rest and it's a whole new ballgame..Zoey does loves being around people and watching the hustle and bustle of crowds,she'll miss that but it's a good thing our house is busy,that will have to do.We will go outside as much as we can,while the weather allows.Although another good thing is that we live in southern California and good weather is usually a given.We'll adapt and she will too.Just another adjustment to our ever changing normal ... we have gotten good at handling change and honestly this kind of change I can do.I will take it over any other medical crisis,in a heartbeat.Zoey has fought too hard to get to this point, to be knocked by this nasty thing and we will do everything in our power to protect her through this up coming season and really,forget about upcoming ... it's already here.We will do the best we can and besides the human precautions,that we will become all the more vigilant with,we will just pray like crazy straight through the next 6 months and hope the little warrior and all her friends,miss it

18 comments:

Junior said...

Isn't it wonderful to have a doctor you trust and who is so great with your child.

We have been on lockdown here for quite awhile already. It is a bummer but worth it to keep our kiddos healthy.

Mommy to those Special Ks said...

I'm right there with you Heather, and Kennedy is IN school... week before last 2 kids from her class went home throwing up. I about threw up myself when I got the call. Thankfully, whatever they had, Kennedy never got it. Makes me want to homeschool her!!! *sigh* Praying for all our kiddos that the nasties stay far far away from them!!!

Googsmom said...

Just think of all the wonderful blankets you can make.
{{{{HUGS ZOEY}}}}}

Question: Is Zoey getting the flu shot? I'm still on the fence.

Stephanie said...

Amen!~ I will be posting the results from our latest doctor's visits tonight or tomorrow. One was the immunologist, and I will pass on the info he gave me about the vaccines and our immuno-compromised kiddos.

We are off to a picnic for all of the children who have had heart surgeries at our hospital. Will have pics of that too, I hope! :)

Steph

Cammie Heflin said...

How wonderful for your family to have such a strong advocate for Zoey as well as her family! Addy will be pretty much on lockdown too. All of us are getting the vacines and she isn't going out too much either. She's not as fragile as Zoey but we are going to be extremely cautious!

My name is Sarah said...

Heather this is Joyce. This is frightening. I too am becoming a germophob. That's why we are working hard to finish Sarah's bedroom and have made room for a nice tv and lots of movies. I am keeping her home as much as possible. I'm afraid her lungs will never survive if she gets this strain. This is scary stuff. But at the same time we can't stop living our lives. It is such a balancing act. Like we need one more thing to worry about.

Anonymous said...

What an awesome doctor you have had all these years and so perfect for Miss Z! By the way, I have been "missing in action" for 6 days (actually Martha's Vineyard) so I am now doing "catch up" - Love this photo - she has certainly grown.

Praying for quick, healthy 6 months to pass. And then in Spring - Ole Bluebelle has put the Needham family (along with Grama perhaps) on my visit list. (for a quick few days like Lisa & Michelle)

Take care

Bluebelle

Stephanie said...

... right on.

Tish said...

Heather,

All four of us have already caught a bug in our household... not the swine flu, but this bug lasted longer than anticipated; it was intense.

You are an amazing mom in everything you do. I am so glad to read your post today because it speaks VOLUMES. Protecting your child from possible death is the reality. CHLA just implemented a "no siblings allowed" regulation at clinic appointments, and the same applies for inpatient visits. CHOC already implemented this regulation last July.

I am sad that I could not hug My Zoey this past week, and of course I completely understand my need to wait until lockdown is over. In the meantime, PLEASE "eat her up" for me!! :)

blogzilly said...

Yeah I'm considering having my older boy strip in the foyer when he comes home from Day Care, head straight up for his bath, jammy up and THEN he can go near Bennett.

Madeline said...

Heather,
I would like to make and contribute a few blankets. Can you give my specifications, etc. that fit your guidelines?

Trina and Jophie said...

It is wonderful to have a doctor how is not only the doctor but friend.

We have one just like that as well. Could NOT make it without her...

We've been on lockdown for 10 years now and even tighter for the last 5 years. Honestly from birth we ALWAYS had to check with his ped before any Easter church services. She would consult with the CDC to see how prevalent the flu was at that point and if it was still flowing about we couldn't go. I was told 5 years ago if I did NOT do this MORE than I was and do it as if my sons life depended on it then he WOULD DIE...

I believed her..

AND we did it. AND we placed a sign on our door that is STILL there. AND we have made MANY people angry BUT, he has been well because of it..

What has been odd is being considered a "shut in" at my age...LOL

We try and bring eerything to US since we can't go to everything...

Guess all us germophobes still have each other on here eh? Sure can't get germies from this screen..

Just in case though I think I'll give my screen a good spray of clorox or lysol whichever is the handiest!

Hold your breath!

Pfffsssststtttttttttttt...

There! All clear! ;0)

Have a good one!
Trina and Jophie

scrappy quilter said...

I'm glad you have a doctor you can trust...that's awesome in these days. It will all be worth it if you can keep her from getting H1N1. Hugs and prayers

ABandCsMom said...

I hear just what you're saying. I'm really freaked out about the H1N1 flu. Carly still has heart issues. Her immune system has never returned to normal since being off chemo. Which baffles her doctors. They chalk it up to Down syndrome. I think they do that because they have nothing else to blame it on.

Carly had her "regular" flu shot last week. Her doc said, "yes, Carly is getting the H1N1 shot". After I asked about it. Makes me want to keep her home for the entire winter. We've already started leaving her at home when we have to head out to the store and such. Hard to do as she gets so upset. She loves to be on the go. The store is her most favorite place to go. Well, besides a restaurant!

I'll be doing a lot of praying for all of our Ds friends this flu season.

Dawson said...

Heres to GREAT doctors. We have been blessed with that in our little corner of the world as well.

This flu stuff is SCARY!! and we will be praying that none of these kids get it.

Love you guys!!!

Michelle said...

What a blessing your doctor is. It is amazing how theLord guides us in ways we don't even know and then brings people to us that we might not need now, but years down the road, yet they are already there, waiting, prepearing! I am so glad you have had some time to get Zoey out in the world, feel the sun and breeze on her face, the grass between her fingers and the beauty the world holds. I know how hard it is to spend the winter indoors, protecting your little one, so I feel your pain. I imagine our winter will be similar. I don't want to take chances, not after last winter! We can be quarantined together, and we'll make it through! Love you dear friend!

Anna said...

Sorry you are on lock down again but so thankful she has made it this far! You are such a great mom Heather, I know you'll find all kinds of fun things to do.

Kele said...

Ugh! You are telling Noah about the flood! I am so nervous about this winter. The swine is all over the place right now in my town... Let's say lots of prayers that week can keep these angels healthy this winter!
LOVE YOU GUYS!