Blog posts by mommy Shana and mommy Jess

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

Friday, April 23, 2010

Berber and braces just don't get mommy shana

So, Greta got her braces the day before her first birthday. A few things were wrong with them as far as braces go....long story short she gets another pair soon. In the meantime, these will do their job.....but Greta is certainly not happy about them at all! Once you get them on her, if you hold her, she's fine. Trying to get the left one on is a nightmare though! Her spastic reflex kicks in and it's like trying to force wood to bend. The schedule for the new shoes makes it worse. An hour on, an hour off. So we are constantly putting these things on her and it feels like it's torture on my part, and probably for her as well. The only reason we have to keep taking them on and off is because they are like a new pair of shoes, they leave blisters if left on too long. But eventually she will wear them all day long without the risk of blisters and without the constant on off that she seems to hate. I know she will get used to them eventually, but in the mean time....I'm finding it hard to force her to wear them (mommy Jess is much better at this kind of thing). But if Greta doesn't walk I will blame myself so I will so what the Dr. says is necessary for Greta to walk, and know that every time it feels like I'm torturing her, I'm actually making it possible for her to walk one day, and lead as normal a life as she can. I hope you know I love you Greta, I wish you could understand that I'm making you uncomfortable out of love. And I'm sorry that you cant do your favorite turn-around twist movement in your new braces! They catch on the berber carpet so you can't move around as well.........don't worry, it's summer and we will spend more time outside!
Next up: Botox on May 22nd.

Tuesday, April 20, 2010

It takes a takes a mommy shana

If it takes a village to raise a child, it takes a state to raise a child with C.P. I mean this both physically and financially. I had no idea the amount of money it takes to properly care for Greta. Of course we have made many financial cuts in our lives, having twins alone put a strain on things, but we have been so very lucky to have been sent donations that go directly to Greta's care. This has really taken a lot of stress away from our family. We have insurance, and at least for the next 2 years we get help for her weekly P.T. sessions, monthly O.T. sessions, and speech therapy. Of course when she's 3 we lose all that help and she still probably won't be walking either......but I'm not going to stress about that now...really, it's one day at a time over here. Anyway, since the January diagnosis, with co-pays for 3 outpatient procedures, one hospital stay, several medications, several appointments to both C.P. specialists, neurologist, genetics (though this one really isn't necessary anymore), and her regular peds dr., it's really overwhelming. Not to mention we pay a pretty high monthly cost for this insurance in the first place. It costs more than I ever thought possible, and we haven't even got to the real expensive part yet! Obviously we can't afford this diagnosis and have relied on the help of other very generous people and can't express in words how much this means for our family. It means greta gets all the help we can give her. I don't have to skip O.T. sessions or P.T. sessions, or decline a medication for her, or not take her to a specialist we need to. I don't have to ignore the other children or choose which child gets to see the dr. this week, or if we can afford to take Gus in for his 103 fevers or Jack for his allergies. We are making it work, but it takes a takes a state. I don't know many people who could afford this diagnosis, really. Not without some kind of community support. So thank you to all of those who have contributed to Greta's care. I00% goes to Greta.....100%. I used to feel ashamed of myself, because I couldn't give to Greta what she needed....but now, I feel no shame at all. I will do what I have to to make sure Greta can get all the help she needs. She's my daughter, and I made a promise to take care of her when I brought her into this world. For Greta, I will always do what it takes. Sure, I can't spend money on things I once enjoyed, but never will that be something I blame Greta for. I'm happy to give up movies, sitters, alone time with my partner, dinners out, all those things I once enjoyed. I'm happy to swap them for family pancake breakfasts, walks to the local park, playing in our sandbox, watching movies at home instead.........of course I would be lying if I said I didn't miss our old life. And I certainly can't say that the emotional part of this diagnosis hasn't hit our family like a sledge hammer, but I can say that in some ways it has brought us closer as a family. My perspective on what is most important has certainly changed, and probably in a good way.
Your diagnosis is still new to us and was a big shocking surprise, but I promise Greta, we will make it work for deserve what all children with C.P. deserve, the care that is necessary and productive for your future. Already on Thursday you get your knew leg braces! Thanks again to all our supporters....without the individual contributions, and programs like First Steps, I don't know what we would do!

Monday, April 19, 2010

Greta’s Alphabet by mommy Jess

I realize for the sake of readability I should probably elaborate on each of these. Instead, I’ve decided to tell you that this “game” started late at night when I couldn’t sleep. I read an article suggesting insomniacs pick a subject and silently run through the alphabet trying to quickly choose a word to match each letter as fast as they could in order to engage their brain in a repetitive exercise that was stimulating enough to keep them engaged but not complicated enough to keep them awake. Major fail on my part in subject choice. But non-the-less, here is Greta’s alphabet.

A is for Auditory Brainstem Response (ABR)
B is for Botox Therapy
C is for Cerebral Palsy
D is for DAFO # 3 Leg Braces
E is for Electroencephalogram (EEG)
F is for First Steps
G is for Gait
H is for Hemplegic
I is for Infarction
J is for January the month you were diagnosed
K is for Karyotype
L is for Left-Sided Hearing Loss
M is Myclonic Infant Epilepsy
N is for Neurologist
O is for Occupational Therapist
P is for Physical Therapist
Q is for Quadriceps Stretch
R is for Rehabilitation
S is for Stroke
T is for Torticollis
U is for Ultrasound
V is for Vital Body Function
W is for Wait and See
X is for Abdominal and Facial X-rays
Y is for "Your Child" has...
Z is for Zygote which you once were

Wednesday, April 14, 2010

Take that adenoids! By mommy Shana

Today Greta got up (unwillingly) at 6:00am to have her adenoids removed, as well as a tube put in her other ear (she has one in the left already). The Dr. thinks that the adenoids were what was causing the excessive fluid in her ears and ear infections. Of course this means that today....Greta couldn't eat this morning, and if you know Greta, you know this is a problem! To top it off, she had to wait until 9:30am to actually have the procedure since the OR was occupied longer than expected so her surgery was delayed an extra couple hours. After the surgery she slept 2 hours and screamed when she woke so they gave her some medication for pain and she went back to sleep. She's home now and sleeping upstairs. The botox therapy couldn't be coordinated so this means an extra sedation and an extra co-payment. If only the medical community could coordinate better I think it would save many people a ton of money as well as time off work and of course extra pain for the patient. Her botox is now at the end of May since it's not recommended she be sedated again for at least 30 days. I was hoping to have the botox now so she could benefit more from P.T., but a month away isn't too long. All in all, things went well and she came through just fine as expected. The picture above is before her surgery, she wasn't too happy after for a post pic!

Saturday, April 10, 2010

Tone by Mommy Jess

I’ve been spending far too much time lately thinking about tone.

It has been said by many that it’s not what you say its how you say it, and my life is no exception.

It’s not unusual to find me any given weekday morning chained to the phone negotiating an appointment, or meeting or other service for Greta. But what is notable is my tone. I know I need to add extra sweetener to my voice during a conversation with one doctor’s office and play hardball with another’s to get my way. Strike a no nonsense tone with one while chatting about the weather with the other. All these things grease the wheels and help me get what I need for my daughter. It’s not what I say it’s how I say it.

But, I can’t always succeed at bending my tone to suite my will. I respond too quickly, don’t think things through, and God help me with the advent of “text tone”. It seems what I say becomes less important than how I say it everyday. It becomes harder and harder to resist becoming embroiled in email wars over a tiny misunderstanding or to hit send to fast and easier and easier to hurt feelings as a result.

In other tone news, Greta has what is called mixed tone, which means she has both spastic (hyper) and weak (hypo) tone. Her tone is what keeps her from being able to do much of what she wants to do. She spends a lot of time strengthening her weak muscles and trying to get her spastic muscles to relax. It seems we both have struggles with tone, though I suppose hers are much more profound. All I can say Greta, is we work towards our strengths and against our weaknesses everyday girl, and some days are going to be easier than others. Oh, that and knowing how to fake a southern accent while living in MO is priceless if you want to get things done over the phone, but that is a lesson for another day.

Tuesday, April 6, 2010

In the 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