Motor Group

Since fall, Vivian has been going to a motor group twice a month.  It incorporates occupational and physical therapy with the early intervention program.  Motor group did not start off very well.  She was much more interested in exploring the classroom and trying to plot her escape than interacting with her teachers and peers.  Group time pretty much consisted of myself and/or Becca trying our hardest to get her to sit still and participate.  Although baby girl can’t talk, her crawling to the door and banging loudly to let her out was clearly telling us she didn’t want to be there.

Over time she has done much better.  We got her to sit with us while we sing and act out the opening song “the more we get together”, instead of her screaming as soon as the music starts, trying to kick and push her way out of our laps.  She still doesn’t fully participate in all the activities, but every class she improves.

This past Friday they wanted the kids to all sit on the green row of squares on the carpet for the song. We got Vivi to sit down, then the music started. I watched in amazement as she sat still, on her little square. Add to that, she starts trying to move her hands in circles as the music starts. Then the CD skips, she claps because it’s over and off she goes. Take #2 for the CD and I am in awe of her once again. Here was my baby girl, sitting by herself, moving her arms, pointing, “dancing” to this song, just as we had been teaching her the last 6 months. This was huge. I’m crying as I’m typing this, just as I did on Friday. I had a big, sappy mommy moment where I was overwhelmed with how far she’d come and how well she was doing that I had to leave the room to cry. At least it was a good cry!! I definitely count this as a triumph, as simple as it is for most children, it was not easy for Vivian to get there. Way to go, baby girl!

This entry was posted on May 29, 2013. 2 Comments

M2M

I consider myself especially lucky.  I have not one, but two wonderful moms.  One by blood, one by marriage.

I tell them I love them all the time.  I thank them for all they do.  I ask them for help when I need it.  I laugh with them.  I cry with them.  I am incredibly blessed to have them in my life.

I believe family is the key to it all.  Not just moms, but especially moms.  It scares me to think of what my life and Vivian’s life would be like without them.

How lucky is Vivi that each week, on Mondays she gets to see her Grandma and Wednesdays she gets to see her Grammy.  I know she looks forward to her coffee with Grandma and her long walks with Grammy.  I love to see and hear all the laughs being shared, the wonderful memories being made.

Words can’t express how much you both mean to me – thank you for all you do for us.  I love you and Happy Mother’s Day (a few days late, in typical Gina fashion).

This entry was posted on May 14, 2013. 1 Comment

Spring fever

It seems like twice a year I have a really hard time with things. This time of year is one of them.

I am a teleworker and my office window looks out to a cul-de-sac. It feels like every year I sit there and watch kids slowly start to play outside more and more, day after day as the weather warms up. I wish so much that I would look out and see Vivian running around, having fun with other kids. Maybe next year.

I was in a slump. It felt like if a negative thought merely crossed my mind, tears were in my eyes. I’ve been like this for a few weeks now. Monday was especially rough. I came across a blog about a woman who had just lost her 6 year old son. He wore orthotics. He had low tone. He had global developmental delays. I felt that I could emphasize what she was going through, raising her son with these special characteristics, though he had serious medical issues, which Vivian does not have. Of course the what-if thinking began. I got out of the house that evening, just to clear my head. Later that night, Vivian was playing upstairs and started to play with this wooden puzzle that’s a big more difficult than the ones she’s used to. This one is Thomas the Train with no pictures underneath to match up and they’re pairs of opposites. I sat on the floor and watched as she put the first one in. “Yeeeaaa!!!” came from her biggest cheerleader. And one more piece in after that. It wasn’t taking her long at all to find where these pieces went. One by one she completed put every piece in the right spot. When she was done we were both clapping and I was almost in tears. She was so proud, as was I.

My train had taken a turn to negative town, but it was in that moment I turned it around. I told myself, as I’ve done many times before, to stop dwelling on what she can’t do. She had just done a puzzle that she wasn’t able to do last week. The night before, she knocked during Toy Story 3 when Lots-O did (not after, right on cue). When her daddy asked for a kiss, she wrapped her arms around his neck and pulled him in for a big one. Tonight during my goodnight hug I asked her to pat my back – she did. The joy she brings is overwhelming and sometimes I just have to take a step back and realize how much the little things add up to.

ABR

Thursday was Vivian’s ABR test.  We were up and out the door bright and early, arriving right on time.  Shortly after arrival we went back for the nurse to take her vitals and get ready for the procedure.  My favorite part was when Vivian made a monkey sound and handed her magna doodle to the nurse – she wanted her to draw a monkey.  The nurse obliged but was quite embarassed by the final product.  I personally love seeing everyone’s different renditions of Vivian’s requested animals. The anesthesiologist was quite a character, yelling “weeee, weeee, weeee” while pushing baby girl to the procedure room.

One of us was allowed to go back with her while she was put to sleep and I was the lucky one.  The doctor put the mask over her face, I gave her a kiss and left her to take a very good nap.  About 45 minutes later the doctor came out to share the results.  Vivian doesn’t have any hearing loss.  Everything about her hearing leading up to her brain works.  That’s good news, of course – but what gives?  Immediately I start wondering what was wrong with her brain.  I suppose we’ll follow up with a neurologist to see if there’s anything that can be done or if they can provide us with any additional information, but I doubt it.

I think either way the test results came back, I would be upset.  If she would have had hearing loss, that would be unfortunate, but most likely there would be something we can do to fix it.  Of course I wouldn’t want that, but part of me was hoping that maybe she just needed a hearing aid.  We would pop it in and all the sudden I would have a daughter that I could get to know better.  She could tell me if she’s hungry, full, thirsty, hot, cold, tired; what she wants to play with, what she wants me to draw…she could tell me she loves me.  Was this naive of me?  Yes.  Of course.  But some part of me has to remain optimistic. Now here we are again with no real answers. We’ll play the cards we’re dealt and make the best of everything.

Hearing Loss?

Baby girl doesn’t talk.  She makes sounds, but no words.  She has never said “hi” or “bye”.  Mama and Dada typically only come out when she’s mad.  Other than that, it’s a few animal sounds, “shhhh” and the occasional “yes”, “yea”, or “nah”.  That’s about it.

For this reason, I took her to an ENT Doctor for a hearing evaluation.  She’s had two traditional hearing tests, but it’s been a while.  I believe both were done when she was under the age of two.  The results were inconclusive, which makes sense because cognitively, she was not advanced enough to produce accurate results.  She is still not.  This Doctor thought he could do a different test in the office, but based on the fact that it took me holding her body, a nurse holding her head and all three of us needing earplugs just for him to examine her ears, he opted for an ABR with sedation.

What’s that?  Good question.  The simplest definition I’ve found is located here:  http://www.asha.org/public/hearing/Auditory-Brainstem-Response/  Hopefully this will tell us if there’s a missing link somewhere.  She may have trouble hearing different pitches, which may be why she can’t make certain sounds and doesn’t form words.  I called Hopkins and made an appointment for July 9 (first available).  Lucky for us, there was a cancellation!  Vivian is now having this test performed on Thursday morning.  She had her pre-op appointment last Tuesday and everything looks good.  Next post, I’ll let you know how it went.  Please keep Viv in your prayers, as she will be sedated for this test.

This entry was posted on March 18, 2013. 2 Comments

Catch Up!

Sorry it’s been a while!  A lot has been going on with baby girl, so I guess I’ll start somewhere.  January 25 was her 3 year check-up.  Almost 3 months after her birthday she weighed in at 31 pounds and was 40.5 inches long.  My little pumpkin is of course still off the charts for her height, but jumped from the 5th to the 50th percentile for her weight.  Go, Viv, go!

Vivian is relatively healthy, so we had only been to her primary care physician’s office about twice within the last year and hadn’t seen her doctor since December 2011.  At every appointment thus far, the girls have known to take us back to the baby scale for weight and height, knowing she can’t use the ones in the rooms – much easier on me, not having to explain at every appointment we go to. I imagined that it was bolded in her chart somewhere “She can’t walk!”, but I learned it wasn’t. After explaining her situation briefly, we got her back to the baby scale and tortured her. No, not really, but to listen to her we might as well have been.

Now the fun part. I love her doctor. She is absolutely wonderful and I so enjoy Viv’s checkups with her.  I filled her in on how she’s been progressing.  I fought tears only once the whole visit, when I told her she still wasn’t walking, but I won.  I did much better than her 2 year check-up when she asked if I needed to make an appointment just to talk. I left that checkup with my own box of tissues.  I brought up concerns I had and left with 5 referrals, along with a few more I had to get later.  Hence why I haven’t posted in a while.

What I loved most about this visit was that her doctor wanted to learn more about Vivian’s chromosome deletion. She also wanted to try and find a support group for me. She assigned us a case manager and told me she was going to make us her weekend project – which she did. She used her own time and found information and resources for us, then called me to explain them. I was very impressed, to say the least. Her doctor truly cares about us and that’s the kind of doctor we need.

Bubbles

Sometimes I just need to keep track of the little victories.  Tonight while watching Pocoyo, on of her favorite cartoons, Vivian was blowing with her mouth when they were blowing bubbles.  This is big for her!  Imitation is one of the things we are working on with her.  She will sometimes also stick her tongue out if we do, although she only seems to do it with me when I’m alone with her…  Last week her teacher was at the house and she was happy with her saying the animals sounds, but she would like to see her relate the sound to the picture of the animal.  Within seconds, Vivian turned the page in her book, pointed to the sheep and said “baaaaaaaa”.  Mission accomplished quickly!  Perhaps my favorite thing she’s doing now is we will say I love you, then ask if she loves us.  Her response?  A big kiss on the lips!

This entry was posted on January 22, 2013. 1 Comment

Maybe next year…

This phrase has been on my mind a lot lately.  Since around Halloween, actually.  I loved getting Vivian dressed up in her costume, but it was bittersweet.  I took her out in her stroller, just around our cul-de-sac.  At the second house, I had to hold back tears while telling them “she would say trick-or-treat if she could.”  Maybe next year, I thought.  I did think it was pretty cute she tried to give the candy back, possibly because she was just mastering the put in/out skill.  Almost a week later came her birthday.  We had a small dinner with close friends and family.  At least this year she was able to open up her presents, although she doesn’t understand what her birthday is.  She clapped when everyone sang her “happy birthday”, but I had to blow out her candle and she didn’t want anything to do with her cupcake.  Maybe next year she’ll understand what her birthday party is for.

Then there was Christmas season.  We went to my husband’s company party, which is held at a bowling alley.  I recall thinking last year that it will be so much fun this year, when we will be able to bowl with her.  Not quite.  Again this year, she crawled all over the place, only sitting still to watch a movie and eat.  Bowling?  Maybe next year.  Our next big day was Christmas Eve.  We went to our neighbor’s house and ate appetizers, opened gifts and had a nice time.  As we were leaving, the other kids started making reindeer food.  A little while later, while putting her PJ’s on, the tears started.  I had really thought this Christmas was going to be different.  Dave asked me what was wrong and I answered “she should be making #$!#@^& reindeer food.”  Maybe next year.  I will admit that I cried myself to sleep Christmas Eve.  I kept thinking how few Christmas’ we are going to have with her having a true understanding of Christmas.  Then I would get upset with myself, thinking how selfish I was.  At least I would wake up in the morning with a happy, healthy little girl and get to enjoy the day with her.  Many others won’t get that with their child.  I am fortunate enough to have a wonderful husband that assured me that although she couldn’t make reindeer food, she is extremely happy, loves Toy Story and has a lot of people that love and care about her.  He held me that night and let me cry.  He also agreed, maybe next year.

Christmas day was much better for me.  It was nice and quiet and I enjoyed spending time with our family.  As I reflect on this past year, the one word that comes to mind is pride.  I am proud of all the accomplishments Vivian, Dave and I have made this year.  Vivian truly has come a long way this year, sometimes it’s just hard to see when it’s right in front of you every day.  I have read that around ages 3-4, children with incomplete myelination make a turn for the better.  I pray and pray that this holds true to Vivian.  Only time will tell, but I hope that this year there won’t be quite as many “maybe next year” moments.

Sometimes,

it just sucks.  This weekend we unfortunately had to bury my husband’s grandmother. This in itself sucked.  This involved a two-day trip to Pittsburgh.  My level of anxiety was fairly high before the trip, mostly because of taking Vivian out of town.  3 hours each way in the truck, with a child who wakes up when we slow down or stop, only if she miracuously falls asleep in the vehicle.  About 6 hours spent in a funeral home.  Trying to eat meals in a hurry when Vivian prefers to eat very leisurely.  There’s much more, but you get the drift.

She ended up doing pretty well, despite the fact that she was also sick.  She only puked once, which happened to be on the way to the funeral Saturday morning.

I should explain why this really sucks.  Dave has two cousins and they all have little girls within a year of each other, Vivian being the youngest by about 3 months.  Those little girls were there and I just have to say that I love seeing them!  They both have great parents and are extremely adorable, smart, well-behaved children.  It’s just tough seeing how my daughter should be.  Saturday both the girls were there and while Vivian was watching a movie, they were coloring and playing.  At lunch afterward, they were eating their food themselves, talking, singing.  I hit my breakdown point.  In August we were all at a graduation party together and it was the same.  The girls were running around, playing, coloring, laughing.  Vivian crawled around the yard, watched a little of a movie and was able to cruise a little bit on the driveway ledge.  I was fortunate to have not packed any warmer clothes for Viv and ran to a store in town to get some for her.  I had barely made it out of the driveway before I burst into tears.  It has nothing to do with the girls, or even the little boy who lives next door to us who’s a month younger than Vivian.  It’s the fact that it’s right there in my face how my child “should” be.  I should be able to have a conversation with my daughter.  She should know what her birthday is.  She should understand what Christmas is about.  She should be walking.

I could go on and on about the things that she should be, but it’s not worth it.  I am so grateful for what she can be.  For what she is.  She can now say what a monkey says and sometimes what a cow says.  A month ago, she couldn’t.  I’ll take that.  I have to stay positive, no matter how hard that is.  I have to face it that sometimes, it just sucks.

Thankful

On this Thanksgiving Day, it is typical to give thanks.  Today I am especially thankful that I am a mother to a special needs child.  I choose to use the words “it could be different”, not “it could be worse”.  I will never pretend to know what it’s like to have a child with a more severe disability, to never be able to receive a hug or kiss from my daughter or to never be able to hold my living, breathing child.  There are mothers that have lost their children, before an ultrasound picture or after delivering at full term.  I have the utmost respect for them.  There are mothers who will never get to see their child crawl or walk, who will not receive an emotional, physical or verbal response from their child.  I am thankful for everything Vivian gives me on a daily basis.  I consider myself lucky for what I have received from Vivian thus far.

Mothers are some of the strongest people I know and the obstacles that some have endured are beyond triumphant.  I am thankful for all mothers of special needs children and would like to share this poem I came across recently:

Some Mothers Chosen By God
By Erma Bombeck

Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit.

This year, nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen?

Somehow, I visualize God hovering over earth selecting His instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.

“Armstrong, Beth, son. Patron saint, Matthew.”

“Forrest, Marjorie, daughter. Patron saint, Cecelia.”

“Rudledge, Carrie, twins. Patron saint…give her Gerard, He’s used to profanity.”

Finally, He passes a name to an angel and smiles, “Give her a handicapped child.”

The angel is curious. “Why this one, God?  She’s so happy.”

“Exactly,” smiles God. “Could I give a handicapped child a mother who does not know laughter? That would be cruel.”

“But has she patience?” asks the angel.

“I don’t want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she’ll handle it.

“I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I’m going to give her has his own world and that’s not going to be easy.”

“But Lord, I don’t think she even believes in you.”

God smiles. “No matter. I can fix that. This one is perfect. She has just enough selfishness.”

The angel gasps, “Selfishness? Is that a virtue?”

God nods. “If she can’t separate herself from the child occasionally, she’ll never survive. Yes, here is a woman whom I will bless with a child who is less than perfect. She doesn’t realize it yet, but she is to be envied. She will never take for granted a “spoken word.” She will never consider a “step” ordinary. When her child says “Momma” for the first time, she will be
present at a miracle and know it! When she describes a tree or sunset to her blind child, she will see it as few people ever see my creations.

“I will permit her to see clearly the things I see….ignorance, cruelty, prejudice… and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side.”

“And what about her patron saint?” asks the angel, his pen poised in mid-air.

God smiles. “A mirror will suffice.”

Happy Thanksgiving!