Face of hope

Face of hope
Courtesy: TIffany Kay Photography

Tuesday, May 20, 2014

Stepping forward

We got a call on Friday afternoon that Meagan's panel of neurological testing as finally back at the Dr. F's office... and all was normal.  As I suspected.  I am grateful we aren't dealing with a secondary muscular disorder at this time, but, that does throw us back to neurosurgery to discuss possible long term solutions.  I did email Dr. R and update him on the results but have not heard back with any new ideas as of yet.  We still love Dr. R and trust him surgically with Megs of course, but part of what makes this hard is that close relationship and feeling there is not a proactive approach.  Being that Meagan is so cognitively motivated as of late, means she is recognizing her regressions and weaknesses more and more. We have to ask therefore if all avenues have really been explored, even if those avenues would be exploratory surgery or re-examining her shunt.   We are thankful she is a fairly happy girl and have seen a lot of cognitive growth this year, but we do see a lot more bad days than we used to with balance issues, movement issues where she will just cry for me to get things instead of getting them herself, falling, and her soft spots bulging.

Examples of behaviors that have emerged over the last two months on Meagan's bad days 

Don't get me wrong - she is a happy girl most of the time and seems to be really enjoying her sisters, toys, etc. If you see her out and about chances are you may not even notice if she's having an off balance day, or a day with more "owies."  However, when as the parent you see your child 24/7, you do notice changes.  We saw such a huge difference in her last October after her revision.  She was so off and on with symptoms, and then the day after surgery she was a new girl -  almost like night and day.  We have enjoyed very happy times since then with lots of progression.  So when we start to see changes like vision loss, balance issues, and arm weakness, as her parents we have to question why we see more bad days creeping back in when this is not her norm.  Of course hydro will always have good and bad times that can happen randomly, but when you know your child's normal pattern of behavior, and you start to see this pattern repeat (more and more bad days = something neuro-surgically wrong = neurosurgical solution = happy kid back on track.....),  you start to become frustrated when no one seems to be "doing" anything about it, especially when you have a kid who has lost some of what she had accomplished.  Because of our growing need for answers, and because of her expanding cognitive growth, we owe it to Meagan to make sure all possibilities have been explored. The more she becomes aware of things, as amazing and wonderful as that is,  the more frustrated she is getting with her setbacks.  That said, we have started on the path to seek a few extra opinions on Meagan's case - talking with a few Neurosurgeon's in other states so they can give us a fresh look at her situation.  We have emailed with them a few times detailing her history, her case, and her current issues that are occurring on her bad days and are sending them scans as well.  We hope a second or third set of fresh eyes and ideas will help us to better understand what we can do for Meagan to help her long term progress. If there is something we can try to help her motor growth so we ease her frustration even a little bit, we are willing to do so. If not, that is ok, but at least I will know there was truly not a neurosurgical option that would be beneficial.  From the beginning I have always said my main focus is Meagan's quality of life.  I am ok with whatever limitations she may experience because of her challenges - we are ok with whoever Meagan is meant to be.  But I won't stop short of what she is meant to be.  To see her lose strength or lose skills is a quality of life issue to me.  If getting there means a second or third opinion, then we will do that in spite of our love for Dr. R.

Dr. R with Megs. We really hope he is the one who has some ideas for her,
 especially considering the close ties Meagan has with him.

While we wait to see what Dr. R will do (or not do), to ease frustration on Meagan's part, and ours, we decided to move forward with Meagan's PT, despite warnings about her arm ligaments.  We have just had to shift gears a bit to be sensitive to preserving the health of her arms.  We have pretty much abandoned any avid attempts at crawling or stair work...we don't restrict her going on all fours, but we are not pushing that anymore.  When she gets her arm braces we can probably go back to that more often but for now we are trying to still take it easy on her arm joints.  We decided to move forward working with her legs.  Ironically, due to her losing muscle mass in her arms, her legs have been doing more work when she is scooching since she has less and less power in her arms.  When she moves forward, she will prop on her arms (think of a picture frame), but, really pulls her body forward with her legs to move quickly.  So while her arms have been getting weaker, the unintended (good I guess?) consequence has been her legs getting stronger - which, I cannot complain about! So we are going to go with it.  We are working on a lot of standing with support - getting her used to being on her feet..etc.  Now that she's been wearing her AFO's for a while, and pulling her body weight across the floor with her legs, her lower legs have the ability to do a lot more work with standing exercises.  We have been also holding up her torso and letting her make "walking movements" with her legs.  We will hold her and walk behind her twisting her torso so she gets the sensation of how to pick up one leg and then the other to move them separately. This has seemed to work ok with her as long as we tell her she is dancing.  Seems odd, I know..but when three older sisters are competitve Irish dancers, she sees QUITE a bit of leg movement.  I think this has actually been great for her because she has been watching them dance so long, she seems to want to do it.   She will even yell "off you go!!!" when we are working.  It cracks me up because that is what she yells at my older girls when they practice their Irish Dance... so it seems as long as we tell Meagan she's dancing, and count her off "5...6....7...." she will continue and yell "off you go!!" and move those feet as fast as she can while we hold her and roam across the floor. It's quite hilarious, and also really good exercise for her legs.  The only "downside" is it's not so great on my back, and she does NOT tolerate "walking wings" or other standing support devices just yet.  Leaning over and holding up her torso is definitely not good for me...so in the near future we are going to try her in a gait trainer and see if we can get her used to being strapped in. She hates being strapped into anything but we are hoping since she loves her legs so much, she will get over the strapping in part once she realizes she can move herself in the device with her legs.  The plus of a gait trainer for her is also that it requires minimal arm use.  With a walker, she would be reliant on her arms for a lot of support.  Since that is her area of struggle right now we want to steer clear of being reliant on them to ease any possible frustrations that may arise. So we will see.  I'm looking forward to her trying a gait trainer soon! Meagan's PT said she should have one we can try in the next few weeks that is Meagan's size.

Another bodily "mismatch" Meagan has been experiencing is between her abdominal muscles and back muscles.  From scooching and sitting, her abs are insanely strong.  I wish I had her abs! The problem is her back is not strong, and leaning back on those weak arms has exacerbated this problem.  So although working on standing is "fun," she won't be able to progress to self standing until we get her back a lot stronger.  She will keep collapsing over forward, and with weak arms, that's not a good combo for the ol' noggin! Meagan's PT decided to try a pressure vest on her to see if it would help a little.  Meagan has a LOT of sensory issues (putting on her AFO's or anything on her feet is a huge challenge everyday, she hates anything on her head, doesn't like things pressing on her body, doesn't like certain textures..etc.. ) so the vest was quite the challenge. After about 10 minutes of screaming and crying, we were finally able to distract her and play with her, and she calmed down and kept the vest on.  The purpose of the vest is to help support her back.  This way every time we work on standing, or she pulls up ...etc...she is engaging those back muscles, whereas without it, her abs overcompensate and do all the work.  Meagan's PT was able to work with her for about 30 minutes yesterday wearing the vest and we could definitely see it made a huge difference in her stability.

Meagan's PT helping her feel what it's like to be standing!

Twisting for a step... the Benik vest is really helping her back.

One other thing we are working on as of late is Meagan's growth.  She still has issues with weight gain and growing.  She is at least back up above 20 pounds since adding in her extra feed, and she still will sometimes snack on food, but she is still shoving a lot of it in her cheeks and not swallowing it all the time... which basically means she's burning calories chewing and chewing and not getting the equal amount of calories from the food she puts in her mouth.  What she does eat is minimal, or I end up pulling the bulk of it out of her cheeks when she can't shove anymore inside.  We are working on this and try to give her a little more through her tube but at the same time have to keep a balance of calories or she gets nauseous (and no one likes that feeling).  I was at Target the other day with the girls and they were asking me what clothes Meagan wore.  Out of curiosity, I held up what she wears (9-12 months) along side what she "should" be wearing (2T).  Wow! I keep thinking she looks so big, but seeing the difference in clothes reminds me what a peanut she still is.  We will see what the next step is in possibly trying to get more weight on her.  Weight drives height, and being we haven't had ANY growth in height since last September, we may be visiting the GI again soon to talk about a plan.

Left: 2T and typically what my other kids wore at 2-3 years old.
Right: 9 month pants - what Meagan wears now at 2 1/2.  Oh so tiny but oh so cute!

So that is where we are right now.  I am waiting to see if Dr. R will call us back and have any other ideas regarding her arms or if he will revisit some of the surgical options available.  If you remember back in October when she had all her troubles then, and resolved them with the revision,  he talked about a long term plan and subsequent surgeries to help her function better as she grew or gained new symptoms due to her slit ventricles.  I'm puzzled as to why that plan has been abandoned but hopefully he will contact us soon and we can have an explanation as to what's changed.  We also look forward to further information from the other neurosurgeons we have reached out to, and see how her growth goes the next few months.  While we wait we won't put Meagan on hold.  We will continue to work with her PT who knows her so well and get her more and more upright, getting more and more weight bearing on those legs.  She has really excelled in her speech lately thanks to music and LOVES to sing. Every time she learns a new word or concept, she always sings it first.  It's amazing really to witness how her brain works!  Despite the recent setback with her arms and crawling, I do love to see her stepping forward in so many other exciting areas cognitively....this girl is full of personality.  She is a nut and so fun to be around!  Meagan has a mind of her own.  She wants to conquer the world , and well, we are happy to help her do just that!

Meagan singing "Do you wanna build a snowman" ...whisper style! Silly girl

Working harder at things means more naps! 
I like to see it as more snuggles!

1 comment: