Thursday, July 17, 2008

"Hope is the thing with feathers,that perches in the soul~and sings the tune without words and never all"

Yesterday Zoey had a Well Baby Visit.Yes ,A Well Baby Visit. That term is not often heard in these parts. In fact up until yesterday she has never even had a Well Baby Visit.Another Zoey first. For the last 16 months any thing that goes on in these type visits were instead done during a visit for some other medical issue, crisis or calamity. Kinda, lets throw in those immunizations she's behind on while your here.So yesterday was kinda cool. Felt kinda regular and dare I say ..normal. There were no immediate medical issue to discuss or go over. We touched on the main things.G-tube feedings and feeding issues.. Heart condition.Left side stroke deficit/disregard. Where we were at with those. Blood disorder. Check. Seizure control stuff followed by a brief talk on Hemispherectomies. Not exactly typical topics for most others but for us ...... normal.Very brief. Very normal. Nurse did her weight and height. No Down syndrome chart readily available. Yes, children with Down syndrome do have their own growth charts. Zoey is, drum roll please ...... 3rd percentile on the typical chart. She's on the chart. When I came home and pulled out HER chart,even better news. Length at 29 inches..... 50th percentile and weight at 16 lbs 13 oz (holy cow can you believe it!),her weight is in the 25 th percentile. Awesome for my little wonder who up until now has taken almost a year to put on 3 lbs. Thank goodness for that g-tube. She received two immunizations with two more to follow in a couple of weeks. We talked about her developmental milestones ever so briefly also and that was that. As I left he said,"See her in 3 months". 3 months,I hope to hold him to that.So, Zoey and I left with smiles. When I got home I took out the papers the nurse had handed me that had all her measurements. I hadn't looked them over while I was there. I actually only ended up spending a few moments with them at home. They basically went over the in's and out's of where your child SHOULD be at 12-18 months. Yeah, "should", being the operative word. First,that's if you have a typical child. Even that ,take with a grain of salt.Then there is the fact that your child has Down syndrome and numerous medical issues, that puts them out of even "typical children with Down syndrome"(not sure that's even an appropriate term,pretty sure it's not.) We try to not compare Zoey to a typical child that is her age. We try to not compare her to another child with Down syndrome ,that is her age.We try not to compare,period. The only time it is a stark reality is when she is side by side with a child in either of those groups. Then it's , okay, I guess she has a long way to go. But then it is followed immediately by ...... but look how far she's COME! Her road is harder and longer then many other children who fall within those groupings. We also try to remind ourselves that her road is also easier then some in those two groupings as well. It is her road to travel. Only hers. We will never know what bearing her stroke and Infantile Spasms or for that matter the fact she has Down syndrome, will play in her cognitive development. But does it matter? Not one bit. We do not spend any time with those thoughts. Not helpful and more important,totally ,UNimportant. Yes there is nature and nurture. No control on the nature part. However, total control on the nurture part. We have enveloped Zoey in all that we can in the nurture department and we intend to keep that up. Whether it is ot,pt,her vision, signing,any of that, we just push full speed ahead. Some times there is not enough time in the day to spend on the "therapy" type things but that's where the one area that we think we have down pat comes in. That's the unconditional love we all have for Zoey. She may have gotten the short end of the stick in a number of departments but what she has never lacked in,is the love department. I don't think it's any coincidence that Zoey's first real learned action was a kiss. Maybe she can't sit and crawl or talk or feed herself or take objects in and out of containers but she sure can kiss ..... a lot. Zoey and I were sitting on the couch yesterday "talking",Caitlin came home from work.She sat down with us and without asking her or saying the word,Zoey leaned right over and kissed Caitlin. Does it get any better than that? Could we possibly ask for any more? Well, actually maybe a moratorium on the major illnesses/disorders. When Zoey's OT and her case worker from Early Intervention got together to go over her "plan" for the up coming year,Jacquie,her OT was asked for goals by her 2nd birthday. Jacquie thought and replied,give hugs and blow kisses. I am not sure she added anything else. Why? Because she knows me. She knows us. It is absolutely not about us shooting "low" for Zoey,it is about where we place the importance of what we want Zoey's life to be. Sure we can't wait for her to sit, maybe crawl,hopefully walk. Even talk.We absolutely want those things for her. We have by no stretch of the imagination given up hope that those things aren't in her future.She continues to do it in Zoey time. In true Zoey fashion. With all that said, there is something Mark and I, our family and the doctors are all on the same page about and that is in regard to her seizure disorder. We pray that we can keep her seizures under control on the regiment we are currently on. We would love to think and continue to pray she can stay the way she is ,progressing forward, on her current medication. But, and it's a a really big but,if her seizures reappear and cannot be controlled on the only medication that has touched them thus far,then we would proceed with the Hemispherectomy. If some of you who have just recently found us,were not aware, Zoey spent a few days at UCLA to under go testing to determine whether or not she was a candidate for a radical surgery that would require the removal of her entire damaged right hemisphere of her brain. Crazy, I know,but potentially necessary. We are grateful to even have the option, as there are many children who suffer from various seizure disorders, that do not have such an option. We feel,believe it or not,lucky to have such an option. We know for sure that we can't have Zoey back slide to where she was 2 short months a go. She was at an absolute stand still. She had regressed. She had lost her light and her smile. We will not have her or us for that matter, return to that place. We have made peace with knowing the risks and weighing them against it's benefits. There is no question in our minds that that is the direction we would go in. For right now we don't have to head that way. We stay on the present course and we thank God daily for the miracles He has worked through Zoey.A mighty fighter our Zoey. She continues to amaze us. We continue to be thankful and look to the future with hope. We would like to think that one of the many mark's that Zoey has already made in this world, is the awe inspiring gift of hope.

*I know you probably have grown tired of seeing Zoey in various sleeping positions but ..... this is a first,again. She has never slept on her tummy,ever. Photo two is Zoey in part of her "therapy outfit". A REALLY tight one piece number that keep everything in. We all could use something like this, at least I could! Next picture is just another thing she has started doing that I love. Now that she likes her tummy, she peers over the bumpers to find me when I am getting ready in the bathroom. Again, not a big deal for say,a typical 5 month old to be doing but for a 16 month old who has struggled with head control,neck strength and tummy time,well,huge. Final picture I took of the boys and our two really sweet neighbor girls having a picnic out front. Innocent,simple, moments I love.


Nicole said...

Your angel is beautiful! I'm finding you thru Kele and Presley. I can't wait to come back and visit later tonight to "get to know" your family. (I'm at a meeting) Many hugs and come see my four little girls at my blog. :)
HUGS, Nicole

Reagan Leigh said...

I know how it is with the developmental milestones (I try to not even look at them) and while trying to not compare Reagan to other kiddos the same age or younger. It's hard to not get discouraged...I know I wouldn't be able to function very well having 100s of seizures a we just take one day at a time and hope for a time when the seizures are gone! That's my prayer for you that Zoey continues to make daily progress and the seizures stay gone for good. Isn't it sad when brain surgery is a GOOD option. But that's the reality that we're all dealing with. And it's an option that Reagan doesn't have. I just hope that Zoey never has to go that route!!
Take care,

The Bliss Family said...

I'm so happy to hear Zoey is doing well. Isn't it amazing how the doctor can tell you 10 wonderful things he observes & only 1 bad thing but you can only focus on that 1 stupid bad thing? With our angels, a clean bill of health is hard to get. And developmental milestones are important but at the same time it can be stupid because it makes it tough not to compare our development with others.

Carey said...

I love the pictures! We have a ton of Chelsea sleeping identical to the first one! So cute!!! I'm glad you were able to have a well child visit!!! What a milestone. We scheduled our 2 yr well child visit for Sep. ... only 9 months late! haha

Kele said...

Heather, I was just thinking today, as I drove down the road, 'if being loved is any kind of therapy or medicine than Presley is going to be just fine!' She is so unbelievably loved, loved, loved! Our girls are very lucky girls to be so loved, by so many.
I am so happy to hear Zoey's doctor visit went well.