December 2014 Update

December has bustled by in a blur. Three out of our five family members have extracurricular commitments making a crazy December even crazier. I’m not used to this pace!

Even with our frenzied pace, Anne has done some amazing stuff this month.

Anne is completing her third month of hand therapy. Anne has regained a slight pincer grasp (a grasp using the thumb and index finger). In order to do it, she has to have intense concentration. I’m always amazed at both the extent of Anne’s brain damage AND the ability to overcome it! If we persevere with hand therapy, she might (after 3-4 years) regain enough functionality in her left hand to use it in her daily living tasks. It will be grueling work for Anne, but long-term, I believe it is important to encourage her independence.

Anne took THREE INDEPENDENT STEPS in Physical Therapy. I don’t have a video of the three independent steps, but you can see how well she is doing in this video:

Anne had LOTS of routine doctor’s appointments… including a trip to the neurologist to discuss medication for ADHD. Anne is doing great in school, but her short attention span limits her academic potential. We’ll begin medication in 2015. We need prayer for discernment as we introduce another medication into Anne’s system.

Anne continues to improve both physically and cognitively so many years after the accident. Her therapists and teachers continue to marvel at her progress. We are grateful this Christmas season for the faithful prayer support we still enjoy from so many of you. God’s goodness shines through Anne. For this, we celebrate and glorify our Savior.

Much love and Merry Christmas from our family to yours!

Very Full

I realize that I neglected to post Anne’s monthly prayer request update for October. Bottom line: our life is full!

I absolutely love my new job. It is energizing to be challenged academically, to interact with students and godly staff, and to teach again. In everything I do, I am always a teacher, so being an official ‘teacher’ makes it easy to be who God made me to be :)

I’m thankful that I am only a part-time teacher. Being part-time allows me to be home when Anne gets off the bus. It also allows me to take her to all of her doctor’s appointments!

Anne’s appointments are about to get very overwhelming…

This week, she starts acute hand therapy. We are finally at a place in her recovery to address her left hand. Her thumb joint is unstable and her left wrist and fingers are severely contracted. We will go to a highly respected hand therapist twice a week through December.
In January, she will start her 4th session of Intensive TheraSuit Therapy. This involves driving an hour to and from a therapy clinic every weekday for three weeks.
We are also working with a neuro-psychologist and neurologist to begin a medication regimen to improve Anne’s attention.

I also have two other children with hectic schedules of their own! So yes, we are very full.

When I begin to feel overwhelmed, I breathe. And then I ask for God’s help! I need to give myself grace to let the laundry pile up and to eat a few take-out meals for dinner. In the end, it’s only the unseen that has value…

Laundry is seen, but perseverance is unseen. Anne’s disability is seen, but the love of Christ in her is unseen. So we press on – trusting in the unseen person of Jesus, and finding rest in him in the midst of our overwhelming schedules :)

Lost December

I’m just tired of being sad. This December, I sorta went into an apathetic shell. Thinking back, I think I was just protecting myself from the grief that comes around the holidays. But that shell just got sandblasted. I just need to learn that it is okay to be sad during December.

In 30 short minutes, a new year will be here, and I feel a bit sad. But I’ll say that sadness is a notch better than apathetic, because at least I’m feeling something :-)

But don’t worry. God is here. He always is.

May Anne continue to make progress in 2013! And here is my list of “gratefuls” for 2012.

Key Lime Pie
Good neighbors
Anne’s crooked smile
Eric’s job
Canon’s enthusiasm
Special time with Kate
Therasuit Therapy
Erin and Stacy at church
French Horns… (I love the melancholy tone of a french horn)
Late night movie watching with Eric
My Wednesday bible study group
Mrs. Bush (Anne’s para-pro)
my new iPhone

and finally… the story of Joseph (from the Bible).

God is good. Happy New Year.

Day 15 of Therasuit therapy

We are finished!!

I am very impressed with this program. Anne made significant progress in the three weeks. It really is amazing. She is VERY proud of herself.

Here are a few videos…

This is one of her walking with a cane. The therapist is moving the cane for Anne and lightly touching her left side. Anne is supporting all of her weight – the therapist is only giving her cues to help her balance.

This second video is a sample of some of the exercises she performed. Her left foot is attached to a pully with weight on the end. She started this exercise on day one with .5lbs of weight. Her left leg was extremely weak, but it has gotten stronger… she is pulling 4lbs in this video! It’s the last day, so we celebrated by letting her eat potato chips… her favorite food :-)

What I’ve learned during Therasuit therapy…

Five things…

1. Anne CAN put forth effort. I’ve seen her grit her teeth and wrinkle her forehead as she strains to move her left arm. Seeing that effort has to be one of the most encouraging aspects of these last three weeks.

2. Anne has a fierce temper. Anne is soooo stubborn and gets angry when she feels unstable – which is most of the time. Today, while she was doing squats, she got especially mad and started to yell something ugly (which she knows she is not allowed to say). The therapist asked her to do 10 squats. Each time she would say the “forbidden” phrase, we would have to start back at 1. She got to 5 – and then she yelled it: “I’ll bite your butt!” So we started over. She got to 2 – and yelled again: “I’ll bite your bu-!” She thought if she left off the ending “t,” it wouldn’t count. But we started over. We got to 3 and Anne started to yell, and then thought better and said, “I’m MAD!” Victory. Anne exhibited reason and self control. Amen and Amen.

3. Anne has many obstacles to overcome. The greatest of which is fear. Anne has the physical ability to walk with the least amount of assistance. But she can’t overcome her feelings of fear each time she feels the slightest bit off-balance. If Anne walks independently one day, it will come after years of “persevering -never-giving-up-hard-work.”

Which leads me to the fourth thing I’ve learned…

4. I can’t believe I’m writing this, but… I wouldn’t trade Anne’s broken body for her former healthy self – simply because of the character she will develop in overcoming her disabilities. Special needs children have amazingly strong spirits because of the amazingly large obstacles they have to overcome. Anne has put forth an inspiring effort over the last three weeks!

I confess that I’ve spent way too much time focusing on my “seen” circumstances instead of the “unseen” promises in God’s word. I’ve been overwhelmed thinking of how much work it will be for Anne and our family to continue her recovery. But just as I take pleasure in seeing Anne’s effort and perseverance so does God take pleasure in me – even in my weakest efforts. The key is leaning on Him for strength for the moment – and not worrying about where the strength for tomorrow will come from.

So the fifth thing I’ve learned…

5. Living in my own strength leads to exhaustion and burn-out. God has given me circumstances that force me to lean on Him. Even though I hate it, and get so angry… and stubborn… and I feel like yelling, “I’ll bite your butt!” – I’m thankful that God would care enough for me to give me such an honorable task as to care for a special needs child. And for this, I am grateful :-)

Day 5 of Therasuit therapy

We’ve finished our first week. Anne has done amazingly well.

Specifically, she is less frightened and has more confidence; therefore, she is putting forth EFFORT! She turned to me several times today and asked, “How hard would you say I’m working? Just regular hard, or SUPER hard?” She is taking pride in her work ethic – this is something I haven’t seen before.

Here is a video taken while Anne is walking on the treadmill. There are no tears on day 5. She trusts that she will not fall, and she is having fun experimenting with the bungees. She is moving her right foot on her own. The therapist is just helping Anne with foot placement. Anne needs help with her left leg, but she is moving it much more than she did on Day 1. We are all proud of Anne (even Anne is proud of Anne – which is the best news yet!)

Day 1 of Therasuit therapy

Anne had her first Therasuit session today. (She will have 15, four hour sessions over the next three weeks.) It was intense. I think she cried for over half the time… not because she was in pain – just because she was MAD. This therapy is hard work, and Anne does not like to work hard. That’s actually one of her biggest obstacles. She puts forth little effort, and when therapists demand more, Anne gets mad.

My prayer is that one day she will channel that stubbornness into getting better. In the interim, we’ll just have to listen to her cry. It’s sooooooooo good for her!

Here’s a rough video of Anne walking on the treadmill. She walked a total of 15 minutes with two short breaks. You can hear her crying :-) Don’t worry, she’s not in pain. It’s just her way of complaining!

14 more days to go…

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…

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!!!!

Hypersensitivity

I’ve noticed that Anne seems to be growing up again. In other words, she’s going through some of the same developmental stages and milestones that she did before the accident. Because of this, I’ve been bracing myself for the phase she’s entering now…

During an 18-24 month period (before the accident) when Anne was 4-5, she went through a hypersensitivity phase. One example – she refused to wear socks because they bothered her toes. That was just her toes… Her entire body and emotional being was hypersensitive. She was extrememly volatile (only at home – of course :-) During those months, we both cried way too much. I often said that Anne “kept me on my knees” because I ran out of patience with her too many times. We had lots of reconciliation opportunites…

So now I get a second chance with Anne. A few nights ago, we were outside, and the wind started blowing her hair. Most people would think, “Ah, what a nice breeze.” But not Anne. She starts screaming (in public), “I want to go inside. I WANT TO GO INSIDE. MAKE THE WIND STOP MAMA!” Oh boy. What fun ;-)

But there’s lots of upside to all of this. First, she’s growing just like she did before the accident… that’s good. Also, she’s more aware of her body. I think when she gets through this phase (and she had overcome her hypersensitivity in the months preceding the accident), she will have more strength and courage to get better. And lastly, I get a chance to love her better this time around. God is in the redemption business, and I need lots of redeeming!

So please pray:

That Anne moves through this phase relatively quickly. Selfishly, I hope she is less sensitive when we go to the beach this summer. Currently, she would have zero tolerance for the sound of the ocean or the feel of the sand or the wind in her hair.
As Anne becomes more aware of her body, that she would have the courage to learn how to move her body in ways that promote more independence (like walking and standing and reaching, etc.)
And finally, for me to love Anne well during this phase. I’m thankful that God has given me another opportunity to parent Anne through her hypersensitivity.

I’ll end with two bits of great news! First, Anne was able to take two steps by herself using only a cane for support. She screamed in fear the whole time, but she did it! And second, she wrote the letter “A” today with her school OT! She is doing so well!!!!

Gratefully, kathryn

Crayons In My Water

An Unpredictable Special Needs Blog

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