October 31, 2011
October 30, 2011
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.
October 24, 2011
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....
October 23, 2011
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.
-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.
October 13, 2011
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-