Monday, September 1, 2008

It's a long one AND a video AND a picture.You may want to read some, take a break, grab that coffee and then come back!


Yes, I have taken another mini sabbatical. I use to post faithfully, everyday. Now, well, not so much. Reason? No idea. This time however I partially know why. I have just had the hardest time writing a new post because I just love the Difference is an Artist's Game video in my previous post. I just think it is beautiful and want so much to show it to anyone and everyone. I am afraid someone is going to stop by, read one of my rants or marathon posts and have missed this awesome video. So I guess I will move the video to my "Learn More And Be Inspired "section and hope people find it there. Oh, well. Onward I move. Reluctantly. But I have to move because you see, Zoey is 18 months old today!! Yep, I can hardly believe it, 18 months old. One of those, feels like a lifetime but then again only yesterday type of things. This child is nothing short of amazing. These 18 months have been filled with so much of life living stuff in such a short span of time. I say life and living simultaneously because this life of ours, yours and mine, is not always filled with the easy stuff. It often requires consciously making sure we are actually living the life. It often holds a great deal of struggle. Moments that require picking ourselves up and moving forward even when everything around you is just pushing you back down. In Zoey's case it has been a whole lot of struggle crammed into a very short period of time. I was at the park yesterday with the kids and began speaking to another mom there. Of course we eventually got to the giant elephant standing between us, that would be Zoey. Funny, I can have a very long conversation with people, talk about all my children but somehow people are afraid to ask about Zoey. She finally said something about Zoey and her size and I just let her whole history over the last 18 months role off my tongue like it is nothing, only to see the mom's mouth was still hanging open at "she had transient leukemia when she was born" ....... My point, I literally spew forth Zoey's medical history quite effortlessly to most during a conversation and I do not think twice about it. Mind boggling information to process to others but to me, just Zoey's life. So here we are 18 months later. Not quite where I expected to be with Zoey but blessed to actually just be here with Zoey. She is doing remarkably well. I say that with both confidence and enormous trepidation. She is blossoming right before our eyes. She continues to monopolize our conversations and captivate our hearts. We hang on every little thing she does and melt with every single smile she flashes us. Medically speaking the run down is this: Seizures, still under control, praising God for that, each and everyday. We head to UCLA on the 11th to see Dr. Shields for a check up. We don't anticipate anything earth shattering there. Her blood disorder: behaving nicely. Recheck at the beginning of November unless I get freaky and need to check before hand. Completely and more then likely quite possible. We begin a very scary time, not that it hasn't all been scary but these years between 1 1/2 and 3 are when a great deal of children are diagnosed with AML and we will be so glad when we can see her safely past this time. Pray hard for our girl in that department because it is never far from our hearts and minds. Speaking of heart: Hers is still shrinking down and we are again so thankful for that. Recheck also in November. Appetite due to the Topamax: Well, as luck would have it she has begun to show more interest. I have been so diligent about at least attempting solids three times a day and over the last few days, I do believe it is beginning to pay off. The last two days, 3 times a day each, she has eaten an entire bowl each time, completely gone. We have not seen that since February folks. I won't get too excited yet but I do believe the tide is turning. Teething: as evident by the video below you will see her little tongue going a mile a minute. She is still working on 8, count them, 8 teeth. She is normally not a tongue thruster but lately she just does not like the way her gums are feeling. Who could blame her. What else. Physical development: stand still. Complete and utter stand still.Rolling, tons. Up on locked arms, head up high, that too. But that's it. The child does not want to sit. No way, no how. That is our focus. Sitting "unpropped".Our big milestone we are trying to reach. Can you imagine how great that will be? It will open up a whole new world for her. Sometimes I go to put her down on the floor and for the heck of it I try and sit her down and boom ....there she goes back or side ways over. She continues to" forget" she has a left side so we work tirelessly to make her aware that it, especially her left arm, is actually there! Speech: still nada. Nothing. Little "noises" but other than that... nothing to speak of. No pun intended. We feel bad some mornings because she is so quiet that we will have had no idea how long she has been awake before maybe we hear her in there moving around. That and Jake. His routine as the first one up in the morning is standing at our bedside saying, "Mom, I am going down stairs and one of the following ...... Zoey is asleep or Zoey is awake or Zoey has a messy diaper" It is so cute. Always looking out for his baby sister. Cognitively speaking: She continues to make great strides. She waves now unprompted. People enter the room or yesterday at the park, there goes her arm flapping like crazy waving hi to whoever! She definitely knows where hair is on others and we are now working on nose. She will also put her hand on a glass of water that we are holding if we say" this is cold." She puts her little hand there and pulls it off quickly. I taught her that when she tags along with me to my other vice, Coffee Bean & Tea Leaf. Each time I get my blended drink she would grab for it and pull her hand away quickly and I will say "cold." Sometimes I don't give her enough credit either. So it proves that no matter what, you can't stop using every chance you get as a learning/teaching opportunity. There is so much to tell and only so much time, room and in your case patience so I will stop while I am ahead. Suffice it to say,we are so thrilled with where we find Zoey today, on her 18 month birthday. Last year at this exact time we were taking our giant deep breathes thinking it was going to be smooth sailing. Life had different plans for us. For Zoey. Today we take our moments as gifts. Each and everyone one of them. Keep growing strong my little one. Slow and steady.

*As always, if you want to hear the video, scroll down and pause the blog music first.
video

12 comments:

Mia hat eins mehr said...

Heather, she is just such a cutie. Love that video. Post more of them pleeeeeaaase.
Love,
Claudia

Cleo said...

Heather, Zoe is such a beautiful happy and sweet angel!!!. Thank you so much for sharing this lovely video :)

Dawson said...

What a beautiful and amazing child!!!!!!! She has a way of melting our hearts. Allison and I talk about her most every day. Thanks for posting the video. It made our hearts smile when we watched it

Caitlin and Daniel said...

I think Zoey wants to live in San Diego

Trippy's mom said...

I loved the post, but most especially the video!! Zoey was so interactive and responsive, and irresistable! My special boy, Tripp (T21 too), turns 18 months this month. Just yesterday in the mall I met a little boy who was 17 months and I could not help but make the unhelpful comparisons. In talking with his mom, I asked how old he was and almost to myself commented that it was an interesting comparison; the mom, of course, wanted to know what I meant. Turns out her mother had given birth to a Trisomy baby, although she did not know which one (18 I am guessing based on the fact that it was deemed incompatible with life). I shared Tripp's story, including some of his own brushes with death and complicated medical history, but could not help but cry even as I felt "weak" doing so. How did you fare, in sharing about Zoey?

Kelly said...

Love your new Reece's Rainbow button. They are an amazing group. Zoey is so darn cute!! I love seeing her in action.

Conny said...

OMG, what a little cutie! LOVE the video - she's absolutely darling and dang, got good taste: I love Small Paul, hehe. Thank you so much for stopping by!!!!!

P. S. Right now, you think the video is gold! Wait until a couple of years later - it's a gold mine and so many blessings more.

Kele said...

I love the video. Zoey is such a happy baby, that is such a joy to see!! I also loved the post! I think Zoey is doing beautfully and I have no doubt she will contine to!!
She brings a smile to the family who loves her in Texas!!
Caitlin and Dream boat's comment is so funny!!! They miss their Zoey, that is so sweet!!

Shannon @ Gabi's World said...

You know you can always shrink the video in your previous post and leave it in your sidebar! I have 2 videos in my sidebar. Just play with the size numbers in the code to make it smaller.

About all of this said...

Actually, this is kind of off topic, but it just came to me that every time I open your wesite and the music begins to play it feels a little bit like coming home. You have wonderful songs here. Maybe I should turn my musicplayer automatically on again as well!
I hope you have a beautiful day!

Anonymous said...

Happy Birthday Zoey! You are such a big girl now. Watching her video so me how much she has changed in the last few months. Changing in so many ways by leaps and bounds! I can't wait to see you again.

kathleen

Mary said...

She is just precious! I love her wave hi and bye! You're absolutely right - every moment is a gift.