Blog posts by mommy Shana and mommy Jess

Three children, two moms, one C.P. diagnosis....and a partridge in a pear tree.

Tuesday, April 6, 2010

In the beginning...by mommy Shana

Some of Greta's earlier procedures




Ok, so this is the first post on a blog I have made to track Greta's progress and to share with others (and later ourselves since we are living in a sleep deprived filled tornado!) the obstacles that Greta faces as well as the steps it will take her to make it to those basic milestones we have long passed.  I'm going to try to post once a week, but who knows how that will go.  I want to add lots of pictures and videos along the way as well, hopefully every couple weeks or so.  This is my first and only blog, so it may not be the best and I'm learning slowly by myself so hopefully it will get better with time, let's hope!  The first video is at the bottom which is of her seizure that lead us to her diagnosis by the findings of an MRI (and FYI that's her twin brother Gus screaming in the background).  She was hospitalized for 3 days and had a battery of tests but we got at least part of an answer to what was going on.  Her seizures are benign, which is a good thing.....she will outgrow them by age 6.  Already they are less frequent.  The brain damage shown on the MRI however, is permanent.  We don't know yet for sure how this happened, what we do know is that she had a stroke either shortly before, during, or shortly after birth.  The first clue something was wrong with Greta, in the hospital she failed her newborn hearing test on the left side........she still has nerve damage on the left side, and we are still not sure to what extent.  So, for a quick review.....we don't know exactly what happened but are getting closer to an answer so that will be discovered on this blog.  We don't know the extent of Greta's hearing loss yet and we don't know at all if her vision on the left side is damaged.  We don't know when she will walk, but are hoping it's by age 3.  We don't know if she will learn to crawl or when.  We have no idea if she will have speech or learning delays, all of which will take time to find out.  So far what we do know, Greta appears to be as smart as her twin brother.  Her right side usually makes the milestones expected such as the pincher grasp so she is progressing.  She is interested in everything and very manipulative, all the important things we wanted in our daughter!  Her left side on the other hand, needs a lot of attention and a lot of work!  Her tone is mixed, both spastic and weak and it's very hard for her to do much of anything on that side.  She can lift her arm slightly but usually just uses it to aid in chewing toys like in the picture on the side. At this time she cannot touch her face with that hand or lift her arm above shoulder level.  She can hold some toys in her hand but she can't reach them and grab them with that hand.  When she does try to use her left side it can be very hard and frustrating for her.  She usually will grab something with her right and and put it into the left hand, but she doesn't use her fingers well, especially since her thumb rarely makes an appearance.  Her toes are constantly curled up as well, and she is lacking sensation on the bottom of her foot.  She may require future medication for her spasticity, and she may also require future surgeries.  Her hips are also pulling out of socket. Really I could go on and on and spend hours talking about this but I'm going to stop and just bring up what we are working on at the time since it can be overwhelming to both write about and understand in one post.   Also, feel free to email me with any questions about Greta!  I'm always happy to talk about her and accept advice freely.  Water therapy and Horse therapy are two things we just learned about and are excited to try.  So if you hear of something you think may help Greta, please let me know!
This week: Greta had occupational therapy this week and was told she should stop using her bottle and start with a sippy cup.  This is pretty usual around one but because Greta has a week sucking reflex and chokes a lot, we need to strengthen her mouth muscles not only for eating, but speaking as well.  She also needs to switch to a bigger bottle that requires 2 hands since Greta holds her current bottle with one hand.  Sure it's kind of neat to watch her do things on her own and totally palm an entire bottle!  But she needs to be reminded constantly to use her other hand and arm.  She also had Physical Therapy this week which she did not want to participate in!  We tried to get her in the crawl position but her legs just won't support it, and her spastic reflex in her arm kicks in and bends toward the ceiling.  She also worked on strengthening her core muscles by using an exercise ball.  She also was fitted for leg braces. More on this below.
Coming next:  Greta got fitted for a hand brace because she tends to keep her left hand in a fist,  the second it comes I will post a picture and this should occur any day now.  She also got fitted for leg braces.  The fitting was kind of like getting a cast.  We got to pick out the color and the socks that go underneath that are supposed to keep her legs from sweating.  The are called DAFO #3.  They basically start below the knee and and strap around the leg, ankle and food.  The woman who fitted her said she would probably hate them at first and that we would start out with an hour at a time until she wears them all day (never at night).  She needs them on both legs so she doesn't stop using the leg with the brace.  As soon as we get them, around 3 weeks, I will post a picture.  She has an upcoming procedure the second week in April for the placement of a tube in her right ear, have her adenoids removed, and hopefully with a lot of luck, a Botox treatment on her left side so we don't have to IV sedate her twice.  Botox will be something she continues to get starting out every 6 months.
Milestones:  Greta learned to roll over at 11 months!  She can roll over both ways.  Just a couple weeks ago she just laid flat on her back, and now she can roll over.....go Greta!
My mood and attitude: Could use improvement.  I saw a little girl who was 2 running through the park and knew that this summer and next summer, Greta most likely won't be doing that.  I'm trying to improve my self-pitty which is sometimes immature and working on growing out of it.  Everyone has problems, every family is different, many children experience hardships........I really need to focus on being stronger for Greta and stop crying about her every time I'm confronted with her disability and hardships which is often.  I guess it will take some getting used to.  I think I'm more upset than she is right now!  In the future I am looking forward to this new life of ours to be the norm.  I never pictured us having a daughter with Cerebral palsy, but who does.  We can do this, Greta can do this.  I know from experience, things could be a lot worse!  Moving forward.......... Posted by mommy shana

GRETA'S SEIZURE AT 9 MONTHS OLD (can also be seen on youtube search as gretaseiz)


Mommy Jess holding Greta during seizure, Gus screaming in background

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