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The truth hurts

Me: A small java chip frappuccino, please
Davis: Mom, just get me a milk please
Me: We are going home you can get milk there
Davis: Yeah well you can get coffee there, too, Mom!

Touché my son, touché. But we don’t have java chips and whip cream at home is what I said under my breath while I fought back the laughter at his painful truth. And I took my drink sheepishly from the barista at the window and drove home to enjoy it, in peace! But turns out drowning in guilt doesn’t let you be peaceful. Oh well! It was still good!

(Let it be known, my husband who doesn’t drink coffee, chortled proudly at his son’s grasp of reality).

Let the Healing Begin: Graphic Warning

Let the healing begin, sort of.

Dissolving stitches almost gone. Staples come out Tuesday. I know it’s probably been hard to piece together where things are with us so here is the abridged version.

First surgery was for the EEG implant and we got the data we needed. Second and third surgeries were emergencies to stop unexpected brain bleeds and “evacuate” the building blood clots. Second clot caused some scarring that means it is damaged tissue now. But doctors don’t care because it’s in the section they plan to remove. All this means is she would have lost the function of part of her brain anyway.

Which leads us to the fourth and final (knock on wood) craniotomy. A left temporal lobotomy. May 27 we are scheduled to have the whole lobe removed to be sure there is no chance for remaining tissue to cause seizures. This is a good thing. Reese is very young and her amazing brain will remap almost everything that would have been in the left temporal lobe. It may just take awhile.

It of course doesn’t come without concerns and risks of its own. Clearly she has a bleeding problem. Maybe it’s caused by long-term steroid use (don’t do ‘roids kids or prof athletes). Maybe it’s a condition she just had naturally. Either way, we are now prepared with vitamins and blood plasma for the surgery. Second concern is seizures — before and after. First we have to make it to May 27 without a seizure. Is it terrible if she has one? No.

But does she ever have just one? So we are doing what we can with other meds for the next four weeks. After surgery, many brains have seizures as they heal. We could see some false alarms
at first and have to wait out a good three months before we can see how it’s going, still taking our seizure meds. And finally, somewhere after a year we would start weaning off all meds to see if she is really in the clear.

It all means this beautiful head, with it’s slowly healing scar, will be cut again, (same place), and then first of June we will come home and start the healing process for real.

Thanks for all your patience, support, words of encouragement and high fives for Reese. She truly is a warrior and we are so proud of her, and her brave big brother.

Holding and biting a cracker is such a big accomplishment for this little lady! And to keep nibbling at it makes her look like an average little eater. Yay for graham crackers!

Slowing down

So it’s only day one of 2014 and I am already behind.

First, I never finished getting my Christmas cards out so if you didn’t get one enjoy this digital version, because I’m not going to even try.

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Second, my birthday. I am probably the only person in the history of Facebook who didn’t thank everyone for all the birthday wishes. I am grateful. I love hearing from so many people. I just got overwhelmed and dropped off FB to finish all our Christmas prepping and then all of a sudden it’s a week after Christmas and I’m still not on track.

And finally, (yes I had to do it in threes), Bryan and I have sort of shut down to try and find our final thoughts on Reese’s surgery. We met with the surgeon at Cook Children’s in Ft Worth Dec 17, so we have had a lot to think about between enjoying the crinkling of wrapping paper and the twinkling tree lights. And while it’s no excuse, it has made it hard to send the good tidings that we normally would. Plus, we just wanted to have as much quality family time as possible. That, plus our lack of sleep thanks to changes in Reese’s meds and routine, have made us slow. At least these are the reasons I’m telling myself, you can take it or leave it. 🙂 

We did get a great Santa shot this year. So you can see the happy, cheesy smiles both my kids are exceptionally good at. 

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So overall, the good news is we have done what we all set out to do — slow down in December. The downside is some of you haven’t heard from us and probably are getting antsy for news. I think this time around we are just a living example of the old adage “no news is good news.”

As always we continue to appreciate your patience, love and support. And I have another update coming just about surgery. So stay tuned… it’s coming, it’s just at a slower pace for a few more days, anyway.

A tender moment with D

Davis: I can do it! I don’t need your help. (Talking about tying his Gi belt.)

Me: Please let me help you. You are getting so big and you don’t need me anymore for hardly anything. It makes me sad. (Big pouty face for effect)

Davis: Nope. All I need you for is to cook.

(Hmmm you might survive better on your own, kid.)

So proud of my little student. It hadn’t really occurred to me what he was going to learn in Kgarten. Silly I know.

(Allow me to reflect for a min). Back in August his teacher told us about the unique language they begin to write in as they learn how things sound. We saw the example and chuckled but man she was right! When he reads it back to you, he knows exactly what he means because he can sound it out. But the best part is he is loving it! He loves the challenging of picking out new sounds. He is offering to read! Never in my dreams did I think I could be so excited for my child as they learn to read. It’s a huge, huge thrill. Reinforces my love for books even more.

OK, so, here is his first Christmas list that has become his letter to Santa. Allow me to translate.

———
Dear Santa,
I have been really good can I please have.

I want a Bat Cave
I want a ninja turtle
I want a camera (no it is not chemo)

———
Don’t worry. We will be working on the “I want” part, but my guess is they were told to start that way. At least I hope that’s how why…

Lost in the little things

We don’t talk much about Reese’s development. In many ways it’s her biggest problem from all that we deal with every day. Of course she doesn’t know it, well most of the time. Sometimes she looks at me and is so intently talking to me with her eyes, I feel like she must be frustrated and be trying to tell me something so important. And her brother doesn’t get it because he doesn’t have anything to compare it to. So we are thankful for that, for now.

So we focus on the little things. It’s the reason we sit on the floor with her every chance we get. It’s also why I am constantly videoing and snapping photos — we never know when we are going to have a big moment.

There are so many little milestones she hasn’t hit yet that we celebrate everything. Lately, despite the hospital set back, and her ceasing all real babble talk, we are seeing little signs of progress. I mean you would hope so, considering she does therapy 3 days a week. Plus Gymboree and music class. But so much time has gone by where we focus on the big goals like feeding herself and walking, and we don’t see a change and then we get down.

So I am reveling in the little things these days.

1. Her hands. She has been picking up more things and holding two things in one hand. She crawls around and stands up and down keeping a hold of the puzzle piece or alphabet letter. Just having this control and wanting to investigate and hold and play is great to see.

2. Her feet. We went longer than most without shoes. She didn’t need them and she didn’t like them much either. So now after a few months of being more consistent we have news.

You don’t realize this as a first-time parent but it’s a big deal to get dressed. You dress your kid every day as an infant and then one day they start pushing a little to help you get stuff on. And then without much coaxing they are doing it more and you just take it for granted. It’s normally about 9 months. Reese started working with us on arms and legs in July at about 16 months. So when she picked up her foot to put her shoe on last weekend, we were floored. She has even put a shoe to her foot showing she knows there is a connection. Also huge.

3. Her magnets. She has refrigerator magnets, both alphabet and animals. Loves them these days. Can pull them off and bang them together like a rock star drummer with his sticks. She always has one in each hand.

Last night I watched her slowly and deliberately push the magnet to the board, it stuck, and she let go just as slowly. And then she tried the other one but it was facing the wrong way. I encouraged her several more times and we clapped each time. Then she was done.

At least she was done with me. She moved over to a book and placed her two pieces on the book and studied them up close. Then picked them up, did her drummer thing and slowly put them down on the book. And clapped her hands, very proud of herself.

Amazing! Is this her mirroring me? Maybe. Is she just pleased with herself? Probably.

I realize it’s hard to not be in my shoes and still get excited. But here’s the catch. Reese throws everything. Not even throws, that would require intent. She drops. She has body awareness issues and when something in her hands moves away from her body like when she puts her arms out in the airplane pose, she forgets it is in her hand and drops it.

You have no doubt seen video of her doing this. It’s all she does. Until now. 🙂

4. Her kisses. We may have lost her talking, but I will never get tired of her little open-mouthed kisses. Somehow, somewhere in that tired brain of hers she knows this is something we do. Does she know it means I love you? I hope so.

There are times I think her instinct is to turn her head and pull away when she sees us come in for the kids. She doesn’t like people in her face. I don’t blame her. The meds, the pokes and all the doctors — it’s a lot. So sometimes she paused and looks at me and looks away but she doesn’t push me back. She holds still for the kiss and every once in a while she even leans in. We will take it.

Everything about her is little. I love her tiny feet and her soft skin. It’s wonderful to hold her and celebrate. But it’s even greater a feeling to just watch her as she figures this stuff out herself. And as far as we know from doctors of all kinds, the fact that she keeps finding new things to conquer is a good sign.

And that is why we are happily lost in the little things.