Anne

Pray for Anne…

March 2012’s prayer requests:

  1. For Anne’s left foot and hand to respond to her new medication,
  2. For Anne’s self control to catch up to her self awareness,
  3. For Anne to gain more emotional toughness… in order to persevere and strive to get better,
  4. And lastly, for Anne to continue to wrestle with God’s goodness and love for her – and ultimately for her to grow to be a faithful woman of God!

Anne’s seizures have virtually disappeared with a slight increase of her current medication! Thank you for praying!

Pray for Anne…

February 2012’s prayer requests:

  1. For wisdom in managing Anne’s medications,
  2. For her left foot to loosen and strengthen, and her seizures to continue to decrease (and disappear!),
  3. For Anne’s attention span to improve so that she can track words left to right and begin reading many pages in a book in one sitting,
  4. For Anne to gain more emotional toughness… in order to persevere and strive to get better,
  5. And lastly, for Anne to experience God’s goodness and love for her – and ultimately for her to grow to be a faithful woman of God!

Thank you!

An update on Anne

Anne continues to make slow and steady progress.

Let’s see… Physically, she is smiling on both sides of her mouth and stretching her left fingers out straight 4 or 5 times a day. Whenever she uses these “new” muscles, she gets really excited. “Look at my big smile, mommy!!!” “Look, look! Look at my hand!”  Can you imagine not feeling the left side of your mouth or not being able to stretch out the fingers in your left hand – and all of a sudden being able to do it??  To me, it’s more evidence that God is continuing to heal.

Anne's pretty smile

Anne has also made big jumps cognitively. More of her personality is emerging. A good, upbeat song will come on the radio and Anne will say, “Oh Yeah, baby!” Her sense of humor and ability to use words continues to improve. She seems overall, more content and happy – although she continues to struggle with insecurities over being different. For the most part, she is keeping up academically in school. She has a hard time writing, so she will probably qualify for adaptive technology for first grade (in other words, she’ll get to use a keyboard to complete her work.) She is also less irritable and has a bit more stamina – which makes our lives a little easier, especially in the evenings.

Anne’s seizures have drastically decreased in frequency, duration and intensity – but she is still having 1-2 very short, mild seizures a day. We’ll see the neurologist again in March to discuss our next plan of attack. But thankfully, the intense (horrible) seizures she was having over Christmas break stopped after we increased her current medication a smidgen. Thank you for your prayers!

She still struggles with her walking, although she has made progress – it’s just not fast progress :-) She walks well with her walker, but she cannot propel or steer the walker by herself, so she has a ways to go before she can walk independently… that’s my dream-goal for Anne – that she might be independent one day. We’ll just have to wait and see :-)

She still likes to mouth objects, but I think peer pressure is helping to curb that impulse. The other kindergartners just think it’s strange when she puts the wooden food in her mouth! This is just one example of why we are so grateful Anne is in a regular kindergarten class. There is so much value in positive behavior models for Anne!

Anne’s rehab doctor is still concerned about the tightness in Anne’s left foot. Her left foot is stuck pointed down and in. This is a direct result of the brain injury – her brain is unable to send the correct signals to the muscles to tell her foot to relax. He’s persuaded me to start her on a medication that reduces muscle spasticity. I’m praying it doesn’t affect her mood or stamina level.

Anne continues to be a source of great joy in our family. She has a unique ability to endear herself to others, so she brings joy to many people outside our family as well. This is a source of great encouragement to us! Our prayer is that God is glorified through this difficult circumstance, and when we see a glimpse of His glory in our lives, we are strengthened to persevere with gratitude!

Thank you so much for praying for our family for so long!!!

Gratefully, kathryn

A day in the life (cont.)

Well… after wrestling with Canon & Kate for an hour, getting dinner on the table and sitting with Anne for the last hour – just talking. I’m tired. Which is the way it usually goes in the evenings…

Thankfully, Eric puts the kids to bed around 7pm so I can decompress for a bit before we hit the hay at the ghastly hour of… 9pm.  Seven is almost here… Ahhhhhhhh.

All in all… It has been a really good day!

A day in the life

Canon and Kate started back to school yesterday, but Anne’s school doesn’t start until next week – which leaves just me and Anne together all week. I thought it might be fun to document what a day with Anne is like :-) So here goes…

6:05am – alarm goes off. I hit the snooze button (twice).

6:25am – get up, get ready – pack Canon and Kate’s lunches and make their breakfast. I’m spoiling them this week with fresh pancakes hot off the griddle. They better not get used to it.

7:00am – pry Kate out of bed – argue about tights vs. socks – force her to brush her hair and help Canon change the turtle’s water (we are turtle-sitting for a friend …that’s another story for another day).

7:15am – get Anne up, change her pull-up and carry her downstairs to the van while herding Canon and Kate in that direction…

7:45am – drop Canon and Kate off. Anne tries to talk to the guy helping with carpool… “How are you? You sure are doing a great job…” But he doesn’t notice. sigh.

8:05am – arrive home and make breakfast for Anne. She wants sausage and waffles – with syrup. It’s bath day so I let her have the syrup – but I can’t sit with her while she eats – she makes too big of a mess – so I sit at the computer and eat my oatmeal while checking my email.

8:30am – wipe the syrup off of Anne’s face, hands, clothes & table – And I let her watch Curious George while I decompress for 30 minutes.

9:00am – It’s poopy time. I give Anne one glycerin suppository and carry her to the potty. We sing songs and play pretend games while she works to pass her bowel movement. We sing the “Days of the Week Song” and I’m shocked that she remembers that it’s Wednesday. Every day we go over “yesterday, today and tomorrow” and talk about the unique aspects of each day. She has a hard time with time concepts – that’s typical for frontal lobe brain damage – but today… she remembered! Yeah!

She thinks she needs another suppository to pass more – so I give her one more suppository and sure enough – she had to go more. After 30 minutes… she’s done. That’s actually pretty quick. (Note… glycerin suppositories have zero medication – they simply act as a physical stimulant… Anne still needs a little bit of help to get things started)

9:30am – clean up kitchen from breakfast and put a roast in the crock pot while Anne plays on her ipad.  I had to borrow  ingredients from my mom – who has her own apartment in our basement. She’s still asleep, so I have to be super quiet – I’ll tell her I stole vinegar worchestershire sauce later – when I give her a birthday card. She’s 73 today… she can sleep as long as she likes! By this time, Anne’s already had two seizures. The last one was a bad one – which means she comes out of this trance-like state extremely agitated. Much crying and slapping and biting. Ugh. It’s bath time…

10:00am – Let Anne play in the bathtub while I clean the bathroom and straighten the kids’ rooms. I check on the turtle – who has gone poopy in her fresh water. Typical. Next up… I have to wash Anne’s hair – which is my least favorite thing to do – except for maybe brushing her hair. Her head was hyper-sensitive before the accident – and unbelievably – it’s even more sensitive now. She screams and thrashes the whole time – I try to restrain her so at least something stays dry in the bathroom – but by the end… I’m soaking wet and we’re both upset. And then I have to brush her hair – it’s easier to do when it’s wet – but she still hates it. hates. it. Again, I have to hold her right hand as she tries to pull the brush from me. But she’s left with beautiful, tangle free hair – and I’m left needing a glass of wine – too bad I don’t like wine ;-)

11:00am – This is our special time. I read to her, and then we review her sight words. Then, I make sentences with her sight words and she practices tracking the words left to right. It’s hard for her to see the words on the far left… so we practice as she points to each word as she says it. This is hard for Anne. So I reward her by letting her lie down on her tummy and I rub and stretch out her legs and feet. She gets sleepy, so I lie down with her and we’re both asleep – and bam – we wake up and it’s after 12pm. Anne has an OT appointment at 1pm, so we start scrambling :-)

12:15pm – I change Anne’s pull-up and put on her braces. I don’t have time to fix her lunch, so we head to Wendy’s. She eats better in the car anyway. I don’t know why.

1pm – OT – and 45 minutes of freedom for me. I run to publix to grab a card for my mom + extras of all the ingredients I had to borrow from her this morning. I get back to the OT office to find that Anne has worked a puzzle she has struggled with in the past – but this time she did it easily. Progress. We like it!

2pm – I have 45 minutes until I have to pick up Canon and Kate – so Anne and I run a few errands. Anne talks to everyone she sees. She’s always so sweet to strangers. She forces me out of my introverted shell… and then we head to school. In the carpool line, Canon’s teacher asks to speak to me. Great – this is either really good or really bad – thankfully, it’s really good. In bible, his class is discussing Jesus’ parables, so after talking through the parable of the sower (Matthew 13), Canon’s teacher asks the class –  how would you classify the soil of your own heart? rocky, thorny, good? Canon’s answer: I hope my heart is good soil… but I’m not sure. His innocent humility touched his teacher, and she took the time to share with me. You gotta love that.

3:25pm – We all get home and give Me-Ma her birthday card (along with more Worcestershire sauce and Apple Cider Vinegar) and promise to take her out for a good meal this weekend. Anne always spends an hour with Me-Ma in the afternoons, so I can spend time with Canon and Kate and get dinner started. But today.. I have a meal in the crock-pot, so I’m writing this blog post – which has turned out to be really long!

It’s time for me to play with Kate. I’ll finish out the day with an evening post…

Pray for Anne…

January 2012’s prayer requests:

  1. For us to find the right medication to control Anne’s seizures… they have increased dramatically over Christmas break,
  2. For Anne to gain more emotional toughness… in order to persevere and strive to get better,
  3. And lastly, for Anne to continue to wrestle with God’s goodness and love for her – and ultimately for her to grow to be a faithful woman of God!

Thank you!

Grief, Silence and lots of stomping.

Sorry for the silence… Old-man grief came out of his hiding place to surprise me once again. I don’t know why I’m surprised – it’s Christmas after all.

I think what really did me in was going to Stone Mountain… My mom (being the extremely generous mom that she is) gave us a trip to Stone Mountain for Christmas… so we packed up and headed east for a one night’s stay at the Stone Mountain Inn for a bit of (fake) snow fun.

We spent a weekend at Stone Mountain in May 2009 – one year before the accident. Anne loved it.

On top of the Mountain in 2009

Anne climbing on the rope's course in 2009

Anne in all of her cuteness in 2009

I know I shouldn’t compare. It’s fruitless and worst of all… it’s painful. I just miss that Anne so much sometimes.

I’m still struggling with acceptance… I’m just not at peace with this new life God has called our family into. I don’t like how difficult it is; it’s tough living moment by moment… and right now I just feel like a whiny, cry-baby. I don’t know how to get to acceptance*. I think it has something to do with giving up control, releasing expectations, trusting that God is good, trusting that God will help me with this huge responsibility He’s given me – all the while continuing to fight and push to provide the best care to help Anne reach her maximum potential (*paraphrased from Stephanie Hubach’s book, Same Lake, Different Boat).  No wonder I’m struggling with acceptance – that all sounds impossible! Thankfully – God (alone) can do it for me.

All things considered, our family had a good time at Stone Mountain in 2011. It was just very different from 2009.  God still has a lot of work to do in my heart, but I’m grateful that He is faithful to finish what He has started in me… and in Anne. Our Anne is precious – and I am grateful for all of the parts of her that work well – and even the parts that don’t :-)

Stone Mountain 2011

How can you not love this girl?

A picture update

We’ve been on a whirlwind tour of Christmas parties, concerts and other holiday activities. As of today, all of my children are home for Christmas break – just in time to celebrate Christmas with Eric’s family tomorrow – and then the 24th :-) I love Christmas Eve! I’m in a much better place this Christmas than last year…. when the grief pulled me under. The light eventually came, but last December was hard. Thinking back on it… I miss how dependent I felt on God. There’s something about being low that makes us look up.

Here are some highlights of the last few weeks…

Anne received an award in front of all the lower grades for mastering her 50 sight words. This pic was taken after the ceremony. Kate and Canon were so proud of her!

One of Anne’s many “holiday” parties…. She got to make a gingerbread house – but all she really wanted to do was eat the candy :-)

Merry Christmas from our crazy family to yours!!!!!

School update

I think I’ve shared before how grateful I am for Anne’s school… but it bears repeating :-)

We had Anne’s annual IEP meeting last week – which is basically a time when all of Anne’s teachers and therapists gather in one room to review Anne’s progress and set new goals for the year. I always cry at these meetings… and I always feel silly when I do – but I can’t help it. I cry when I’m grateful, and I’m just so grateful for all the people that seem to be “for” Anne. They are truly rooting for Anne to do well, and I feel they give their absolute best to help her reach her potential.

Anne receives Physical, Occupational and Speech therapy at school. She is in a regular kindergarten class, and she has her own para-professional to assist her in all of her school tasks – from writing to walking. Her para-pro is an answer to prayer. He (yes, I said “he”) is a recent college grad who has a degree in phys. ed. …He wants to coach – but he had to settle for being a para-pro… to a difficult seven-year old girl (who LOVES him – oh yes. Anne loves him.) He is so steady. He has endured much abuse from Anne – biting, hitting – but he never loses his temper – he just hands out the appropriate consequence. He notices subtle behaviors in Anne that others would easily miss – both good and bad. He takes the initiative to do more than what is expected to help her reach her potential. He really is impressive!

Anne’s primary special ed. teacher is so dedicated. I feel like it’s her number one goal to provide the best services for Anne. Her therapists are all great, but Anne especially loves her Physical Therapist, Ms. Lynn. Somehow Lynn is able to push her without Anne getting too upset. Today she walked farther than she ever had… and she is starting to propel the walker a few steps by herself!

How much farther Ms. Lynn?

Finally, the counselor at Anne’s school recently reached out to me. She is going to include Anne in her Rainbows program (which helps kids cope with grief, feelings of being different, etc.) She told me that when Anne came to Nickajack, she took the initiative to read all of Anne’s CaringBridge site – just to familiarize herself with Anne’s history. She’s been following Anne, and determined that Anne’s self awareness has improved so that she would benefit from her Rainbows group. She’s right… It is the perfect time. Anne’s counselor was just named the NATIONAL SCHOOL COUNSELOR OF THE YEAR. Now that’s amazing!!!! The AJC  ran an article about her. You can read about her here.

Anne is doing so well in school… but one of the reasons is because she goes to a great school and she is surrounded by great professionals! Go Nickajack!!!!

Sleepy Conversations

It’s late… 11:30pm or so, and Anne just called out for me. It’s rare that she wakes up at night, so I went straight to her room….

“Mommy, I called your name because I need your help to get comfy.”
“Okay Anne” and I bent down to kiss her head…
“Mommy, you know… you are real close to my fragile part. Be careful, Mommy”
“I won’t kiss your fragile part, Anne. I promise.”
“Do you think I need music to go back to sleep?”
“No, Anne. It’s the middle of the night. You will go right back to sleep.”
“Goodnight, Mommy.”

It always amazes me how perfectly she speaks… using full sentences, flawless grammar and precise diction. Even when she is half-asleep – the verbal part of her brain works… and it works well. It’s a good thing to go to bed grateful to God for my little girl’s brain.

It’s a good. good. night.