aquatic therapy.

sitting up...little by little.

trick or treat.

therapy camp.

Pin and I had just lived through a life-changing experience: Intensive Therapy. Over the course of the 5- day week, Pin had a physical therapist, occupational therapist and speech therapist that worked with her specifically for 20+ hours. Brenda, Heather and Daniela poured every ounce of energy they had into Pin and equipped me with tons of "at-home" ideas, suggestions and resources. I came home energetic and BEYOND encouraged. Jer instantly noticed a change in Pin's mobility and vocalization. We have tons of hope and are really starting to enjoy being parents.

The biggest piece of overall advice that was given to me was this: Pin needs MORE. More stimulation, more stability with her posture, more kinesthetic awareness, more arousal, more synergies of movement, more initiation of movement, more somatosensory input, etc. The medication that Pin was/is on has slowed her body down SO much she needs MORE than the average kid to get her going. She needs stronger tastes (they fed her pickle juice and she barely winced!), more swinging, bouncing, and rough-play, more noise and more of LIFE in general. Living life BIGGER seems overwhelming but I'm choosing to incorporate small things into our daily living. At the grocery store today, I bought whipped creme, chocolate pudding and a box of cherry jello for our "food play" time. If I make it fun, it won't seem like therapy. Right?

The best part of all of these delays, is that we think she can catch up. There is no reason for us to believe she can't. We have never been told "pin won't walk, pin won't talk, etc." The hardest part about a seizure disorder is getting the seizures under control and by the grace of God, that has happened. With lots of work, play, patience and most importantly, prayer we have every reason to think Pin can lead a normal, healthy life. Brenda, Pin's PT, kept saying "she is college material." 

Until then, I will be playing hard and LOUD with Pin. If anyone wants to come play with us, let me know. We are the house with the strobe light and head banging music. 

Xoxo. 

Steph

asleep by 6:55 pm = good day.

Our first day of 'therapy boot camp' went really well. THANK YOU for all the voice mails, texts, emails, phone calls and messages on my FB wall. It meant so much to me knowing that you were all there with me in spirit and through prayer. It was really difficult walking into the room alone with Pin as the other 5 children attending the camp had both parents with them. Pin is the youngest "camper" and the one with the least challenges (and the cutest, in my opinion). We introduced ourselves and I was shocked to learn that one child flew from India and a therapist from Brazil just to attend this camp. All I did was drive an hour and a half and I feel like I'm in a different world. Ahhhh, Wisconsin.

Pin was put in her own separate room and had at least two therapists  working/observing/playing with her the whole day. She took two brief naps during the day and was fast asleep by 6:55 pm.

The greatest observation that EVERY therapist noticed about Pin is her eye contact. One woman said, "she is looking into my soul!" and another said "she is trying to read my bank account numbers (ummm, I wish!)" Another questioned, "maybe she'll be a shaman?" I just smiled awkwardly, as our goal for our daughter is certainly not to lead people into communication with the animal spirit world.


Our goal, however, for our daughter IS to lead people into communication with the Holy and Living God. Maybe she is starting right now....


Xoxo. 
-S.

our plan forward.

In the last post I asked for prayer regarding Pin's neurologist meeting. Thank you so much for praying!

The appointment was last Friday and it went REALLY well. Her neurologist was thrilled to see how Pin looked, acted, etc. She kept showing him all her tricks and he was very amused and encouraged. We have started a S L O W reduction on her spasm medications....after six weeks, she will be down to half of the initial dose. If all seems stable, then we will take her off of her second medication (topomax) completely. Her physician said that based on her last EEG, it is possible that if we removed all the medication she would be seizure-free. My heart is very guarded on this one, but praying toward that end fervently.

As I type this update, I am sitting in a near dark hotel room in Pewaukee, Wisconsin listening to the hum of a loud sound machine. Jeremy is on a plane headed to Las Vegas and Pin is sleeping 25 feet away from me. In the morning, Pin and I start "therapy boot camp." It runs from Monday to Friday and she has 4 to 5 double sessions (2 therapists/1 child) a day. Some kids make huge strides, some sleep through it all and I'm praying we just get somewhere between the two. Jeremy would love to be here with us but is in the middle of earnings season and on top of it, has a huge conference to attend. I'm just so grateful that his hard work allows us to try everything we can to get Pin's lil' body moving.

Pin turns 18 months on Tuesday and is still not sitting up yet. Her one "main goal" that we are working toward this week is "independent sitting." Every single session is working towards that milestone.

Prayer requests:
-Our safety as we are away.
-Pin's body would start to move: legs kicking, arms reaching & hands grabbing.
-Pin's overall strength and balance in her core so she can sit up.
-More connections would be made and retained in her brain.
-I would be patient with Pin.

Thank you. We love you all.
Xoxo.

update.

Pin is now 17 months old. She is a doll and a delight. Jer and I are becoming more comfortable with parenthood and parenting our lil' girl. Maybe we are enjoying it so much because she is doing so well. We have not seen a seizure since July 5...we are so grateful and thankful for this. Our days are filled with less anxiety and more hope. Less worry and more pure enjoyment. Thanks be to the Lord!

Pin still has many, many delays. As you can see from the photos, she is still not independently sitting and hates to be on her stomach. I work so hard with her and need to remind myself daily that ONE DAY she will get it.

We have an appointment with her neurologist tomorrow and would love prayers for direction and guidance regarding her medication. Of course, we don't want her on ANY meds as they slow down everything....effecting development greatly. But, the alternative is scary if seizures return. Again, it remains a very good chance she will outgrow seizures completely...we really do covet your prayers in this regard.

From October 23 to October 28, Pin will be attending an intensive therapy "boot camp." It is in a suburb of Milwaukee and she will be receiving 5 hours of PT, OT and ST for 5 days straight. She and I will be staying in a hotel and attending her sessions during the day. I am exhausted just thinking about this upcoming week but grateful for the opportunity and praying that it is fruitful and not just something she sleeps through.

I hope this finds you all well. It is hard to believe the holidays are soon upon us. What a great time of year!
Enjoy your day.
We love you-
S.

winston salem. north carolina

sunset beach. north carolina

do it again, pin.

2011 + children= techno kids.

we like to party.

standing and stuff.

Last week, Pin started bearing weight on her legs. We are thrilled!

Also last week, I picked up a 'stander' to support her in standing because we thought she would need it. I'm so grateful the first came before the second. Her physical therapist (and Pin's babysitter) helped me "fit" her in the contraption today. It looks like she is about to ride a stand-up roller coaster at Great America.... maybe if I blare 80's hair-band music, I can convince her she's on the Shockwave.

She was exhausted after 15 minutes of forced standing (or whatever you call it). We are going to work up to 45 minutes per day. The thing has wheels and I think it would be a RIOT to push her on a walk around the neighborhood. I don't think Jer would have the same enthusiasm about it. Don't tell him!

I'm thinking between the helmet and the stander we need to round out the look with some braces on her teeth. At this rate, it's obvious she will need those too.

Xoxo.
S.

waking up full of awesome.

I like this:  (minus the swear words. Ok, I secretly love those too. Sorry, mom.)

http://blog.pigtailpals.com/2011/08/waking-up-full-of-awesome/

'feel free to go ahead and make yourself right at home."

hi. it's me, pin.

this morning, i began to dream again.

Yesterday I did something huge. Instead of rushing home after Pin's helmet fitting appointment (2nd time around, folks) to give her a much needed nap, I went to the mall instead. This was NO small decision. I waited in the running car for a few minutes weighing all the options in my head. I called Jeremy crying and asked him if that was ok. Then, I did it. I decided to break the fear that I have let myself live in. I took my child out while she was sleeping.

"Ok, I'll ONLY go to Williams-Sonoma to get that shower gift I need and then go home," I told myself. But then I remembered that Zara had a sale. And Zara is on the OTHER end of the mall. And I LOVE Zara. So, I walked (almost ran) to Zara. Pin still slept. I rode the elevator to the kids section and could literally feel my heart beating fast. It was between the graphic tees and the marked-down swimsuit section that I realized, it's not about me. I can't change her. You would think I have learned this lesson by now, but I haven't. I had to re-learn it again, thankfully this time in Zara (Dear Lord- maybe the next time you have me learn this lesson again I can be in a boat on Lake Como? Thanks! Amen).

So, I decided to relax, enjoy the beautiful weather and walk normally around the mall like ALL the other moms that I passed while running. Zara became Anthropologie which is next to Restoration Hardware that lead to a venti unsweetened black iced tea. WHAT!!!  Now I'm feeling guilty (just kidding). Pin woke up right after Janie and Jack and before Gap and J.Crew. I fed her a bottle and THEN went to Williams-Sonoma. I strolled back to the car feeling proud and accomplished.

Later that day, I remembered the words of a man I met who was working with Armenians from Armenia. "The problem with Armenia today," he said, "is that the people don't know how to dream. Under Soviet control, they were ruled and oppressed but today, as free people, they still choose to live that way. As little children, they were never taught to dream bigger than the life they were living. Because of this belief, they lack creativity, innovation nor can they dream a different exsistence for themselves, for their country."

Then, it hit me this morning... Because I walked yesterday, I can dream today. I will not choose fear over faith. I can't. It effects me, my marriage, my daughter and our future.

During Pin's nap I opened our safe and got out my "favorite's folder" filled with bathroom ideas, house plans and inspiring spaces (I have no clue why it is in the safe). I sat and dreamed living a life different than the one today:

A small, thoughtful home in Southern California with a garage door in the family room where Pin can ride her roller skates in and out of the house. A kitchen with a huge farm table and lots of fruits and vegetables. A mud room and a garage filled with more bikes than family members. A community garden close by and nice neighbors to help tend it.

So, who wants to come over and pick lemons from my tree?

love you all.
S.

i cried. jer clapped.

Yesterday, Jer and I both witnessed Pinny roll from her back to her tummy for the first time. We are thrilled for this lil' milestone!

Thanks for praying for her. We are blessed.

out of chaos life is being found in you.

All this pain
I wonder if I’ll ever find my way
I wonder if my life could really change at all
All this earth
Could all that is lost ever be found
Could a garden come up from this ground at all

You make beautiful things
You make beautiful things out of the dust
You make beautiful things
You make beautiful things out of us

All around
Hope is springing up from this old ground
Out of chaos life is being found in You

You make beautiful things
You make beautiful things out of the dust
You make beautiful things
You make beautiful things out of us

You make beautiful things
You make beautiful things out of the dust
You make beautiful things
You make beautiful things out of us

You make me new, You are making me new
You make me new, You are making me new

You make beautiful things
You make beautiful things out of the dust

overnight at hospital.

Last night's stay at the hospital was rough. Not in a "hard news" way but just plain old tiring. We shared a room with a girl two months younger than Pin who slept ALL day and cried ALL night. The poor girl had seizures and spasms (like Pin) but was fairing far, far worse. Her body didn't respond well to the anti-spasm medicine, that has thankfully worked for Pin, and she is now on one that makes her really swollen. I have never seen anything like it....she looked so uncomfortable. I felt so sorry for her and yet SO grateful that the Lord sparred us from that route.

In May, when Jeremy and I were given the news that Pin's seizures had evolved into spasms we were devastated, shocked, discouraged and heart-broken. We were then told the two treatment options used, their side-effects and that we had 10 minutes to decide. We stopped, prayed and felt peace about the option we chose. We still feel peace and such gratitude to the Lord for His guidance.

Yesterday morning, Pin was "hooked up" to the EEG and stayed that way until 7:00 this morning. She is such a good little patient but is definitely becoming more opinionated as she gets older. Last night, she was fascinated by all the cords and I found it disgusting that she kept trying to put them in her mouth.The hospital is dirtier than any hotel I have ever stayed in....

Her neurologist visited us several times yesterday and gave us great news. Pin's brainwaves are much improved since her last EEG (July 5). Her brain activity is still abnormal but overall looks really good. We do not need to add another medication and are considering reducing her current spasm medicine a bit. We are very grateful.

As always, thanks for praying and loving us so kindly-
Xoxo.
Steph