Wednesday, October 14, 2009

Nya's Story

This won’t be short!
So where do you start when you finally decide to go public with information that has been so personal and challenging for the last 7 months?? Well I don’t have a good answer so I’m just going to start at the beginning and this will hopefully help explain why it has been so hard for me to blog when some of the most exciting things to me right now are so personal and are truly little miracles every day. I’m not a writer so don’t expect this to be very eloquent. It just isn’t me.
So here goes!
My beautiful baby girl, Nya, now 15 months old had a stroke likely in-utero. It happened for sure after the third trimester of my pregnancy but we’re not sure when and we for sure don’t have the answer to why. When she was about 4 months old, I remember telling Bryan “I don’t remember our other kids being such right hand dominated this early” and then I really thought nothing more of it. It wasn’t until March of this year when Nya was about 8 months old that my sister pointed out to me that she DOES NOT use her left arm. Apparently I was too close and couldn’t see the issue because it was just becoming normal to me. Her left arm was bent and really tight up to her chest and her little fist couldn’t be any tighter. My sister gave me suggestions to “tie” up the right arm and force her to use the left arm so I considered that and I then I decided I’d start talking to my doctor to find out what I needed to do. (Funny enough my Dr. actually really liked my sister’s idea and encouraged it) Well a day or two later I was talking to a nurse in my ward and her thoughts were yep I should have her checked out because it could possibly be cerebral palsy. Okay only slight panic as is a term I “know” but seriously that was it pretty much just a vocabulary word. So that night I began researching Cerebral Palsy and at the point that it started talking about brain damage I shut the computer down and cried and panicked. Bry was in bed right by me asleep so I didn’t want to make too big of a deal about it yet. --Unfortunately that is about the end of the computer researching that I’ve done. I really think I haven’t fully accepted all of it just yet and I can’t research too well because it seems like over load and so much information so my mode of operation is to just not find out all I can (I know probably not the best way to handle it but I do rely quite a bit on Nya’s therapists).
Well first thing the next day I called my pediatrician and my local early intervention center and of course I had to leave messages at both places. So I wait out the day and then I wait out Tuesday too as I try not to let myself panic until I know more. Well I head to a Dr appt. for myself and while I’m there my pediatrician calls and we discuss the symptoms and he calms me down but does suggest that he see her. So I run and pick her up and head right to his office. After examining her and discussing with another Dr. that had recently moved here from Primary’s, they determined that it was likely Erb’s Palsy. He set me up with an appt. for a CAT scan and then also started working on an appt with a neurologist at Primary’s. So I have a CAT scan the following Monday (a week later) and then a follow up with the pediatrician on Tuesday. A CAT scan is not so fun when you’re trying to get a baby to sleep so you can hopefully get a good scan without having to sedate the baby so that was a fun experience.
Well I show up for my follow up appt with Elle and Nya since Tanner was in school and Bry was at work and I didn’t think too much of the Erb’s Palsy (oh I did do some research on this and it was not nearly as concerning as cerebral palsy whoosh). Well I’m not sure the Dr. had read the report from the radiologist because he read it to himself and then paused and you could see it wasn’t the result he expected. He then read it to me and tried to explain in plain English that she had a mass in her brain on the right side about the size of an almond/walnut. He wanted to pull up the pictures on the computer. I was not sure what to do, so I dumbly asked “do I call Bry and have him come over”. This was his response “Yes, the dad should be here.” So I call Bry to get him here and my mom to come get Elle. My poor mom by the time she pulled up to the Dr office I think she was more upset than I was and I really didn’t have any information to give her other than there was a mass…what ever that meant. Bry arrived shortly and we went with the Dr. and viewed the pictures and yep you can see where there is brain and then there is this black spot where there is just nothing a void. I don’t remember too much more about the appt.
I do know that since then we’ve had a lot of appts, at Primary’s, locally, and with early intervention. What we have found out is that she falls into a category of cerebral palsy termed hemi-paresis or hemi-pelagic. She is somewhat paralyzed on the left side both arm and leg. Fortunately she really has a less severe case. And she is doing fantastic! She is crawling very well which we were told she would likely only ever do a bum scoot. She will open her left hand and is now actually holding on to items. She is currently standing up to just about everything. She doesn’t always get her left foot down flat and often her toes are all curled up like she is almost trying to stand with her foot bent way forward like on the top of her foot. However that is starting to be less and less and she is starting to be flat footed more and more. She is starting to do a lot of side stepping around or next to things (i.e. coffee table, couch, etc.).
She has physical therapy once a month, occupational therapy twice a month, and works with a service coordinator (fine and gross motor skills, language, etc.) twice a month. Even with all of these issues she is the happiest baby. She is really a mommy’s girl unless daddy is around and then it is ALL dad. I am constantly told how much drive and ambition she has and how much that helps her.
I hope and pray every day that she will continue to grow and improve. It has really made me appreciate all of the little milestones that kids make. Things that Tanner and Elle did I really took for granted and I daily find myself so excited that Nya is able to accomplish something new. We definitely don’t complain over her getting into everything because right now that is just proof of her improvements!
Well that about sums up my baby’s story. This has been the largest reason why I don’t blog much, in addition to chasing after the two big kids, I think I’m either at appts or I’m doing my own therapy here at the house. I truly have been blessed to have this wonderful little girl in my life if not just to help me realize how wonderful my other two kids are with all of their energy and abilities even though I seem to not have much patience for them lately! I really needed to be able to write this out so I can blog about Nya’s progress and have it make sense why I’m so excited that she held a bowl in her left hand while banging a spoon on it with her right hand – oh and yeah this was at 12 months not 6 months, but she is starting to catch up!
Thanks to any of you who were actually able to endure this LONG post!


  1. Wow! Thanks for the update. At least now you know what is wrong and what you can do. I would rather be there than just wondering if something IS wrong or not. Good luck, will look forward to hearing more about her progress :)

  2. Good job, brave girl....(you and Nya)

  3. Summed it all up pretty well. Can't wait to see some PICTURES of her progress and some of the before ones too. I know it's hard, but you got the hardest part out. Now just keep us all informed so we can help you when you need it. Even if it's just to give some encouragement and advice. The blogging world can be a great help. Reach out and find those that are having some of the same experiences. Great Job, sis. Love you!

  4. Ohhh girl.. have tears in my eyes... sitting there at the Dr. for the Cat scan waiting to hear what the 'mass' was would have been crazy hard to deal with...

    I'll do the research you do all the hard work eh?? :) God bless...

  5. Wow I can't imagine the stress and heartache waiting for the diagnosis.... I'm so happy she is doing so well and me and my family will remember you in our prayers. We love and miss you guys. :)

  6. Naoni, I am so glad you posted this. What a sweet little girl! It is hard having to deal with trials, but especially when they involve your babies. What a blessing that she is doing all that she is and improving! I can't wait to hear more. I remember having occupational therapists and physical therapist come to my house for my the twins every month. It is amazing all of the technology and things that they can do to help our little ones. I'm sending prayers and hugs your way! Love ya. Shanna

  7. I found you blog through Kristy and so glad I did - So sorry to here the you are having to watch your beautiful baby have to go through this. She is such a cutie and want you to know our thoughts are with you and your wonder ful family