Monday, May 17, 2010

Emma walking video repost

So blessed are we!

ow, it's been over two months since I've written anything and so much has changed.  I now have an almost 18 month old toddler that is actually walking and it's the most wonderful thing I've ever witnessed!!  My heart is so full every time I see her walk through the room and I just want to grab her and squeeze her so tight, does she know how proud her mom and daddy are???  She is truly the most amazing little girl and I'm still in awe almost daily at how much she has accomplished in her short many people could undertstand what a miracle is if they knew her story.  I prayed for a long time for god to give her the strength to accomplish anything she set her little mind to.  I prayed for both Drew and I to have to patience which was so hard to have when you watch your little girl try to walk and keep falling.

 I'll admit I had a lot of doubt that she would just start on her own.  But on a April 11, just an ordinary sunday, Drew and Emma were doing their normal walking practice and she let go and kept on walking!!  Drew yelled for me to come in and she just kept doing it over and over with this huge grin on her face because she knew, even at her age that this was something big.  Since that day she has gotten much better at controlling her steps and she just loves to walk everywhere we go.  We hear "Unt alk mommy!" and it's not to hard to understand that she's ready to walk mommy!  She also learned how to stand up on her own which really amazed me because that takes a lot of leg strength but again she pushed through those limitations and rocked it!!  

Drew and I both sat out on the porch one night and talked about how much things have changed since we received Emma's diagnosis while I was pregnant.  I used to read the babycenter boards religiously everyday, so I was prepared for almost anything that Spina Bifida was ready to throw our way.  I became this person who was less prepared for good news than I was for bad.  It's not a great place to be at all and it puts you in such a different state of mind.  I had to learn that sometimes things can't be medically explained and you just have to have faith.  Every child is different and that is definitely the case with many things affect the outcome.  You can't assume anything with SB.  The babycenter board has been my lifeline and I feel like we have this huge family spread out across the world that I will always pray for and care about.  The moms there have helped me learn so much, especially that even the most simplest thing with your child should not be taken for granted.  And walking at 16 1/2 months with Spina bifida........PRICELESS!!

Okay so now that I'm crying all these tears of joy I should share a few things.  Emma goes to SB clinic on May 27 and we also see the neurosurgeons that day too.  We can't wait to let her walk into both appointments and show them her mad skills!  I know Dr. Perry and Gretchen will be so thrilled to witness that, they've always been such awesome cheerleaders.  And Maya.....I could have never ever made it through Emma's first year without her.  Sometimes I wish we lived closer to UNC so we could see more of her.  She will never know how much she has meant to our family!!  Dr. Alexander and the docs at SB clinic will be speechless.  Drew thinks we'll get a "Told ya so!"  but bring it on.....she's walking!  We had so much doubt about not bracing her but things turned out for the better and I'm willing to admit that waiting was the very best thing for Emma.  A point that Jenna, from the CDSA, who visited about every month or so, helped me to have patience with when I was just ready to throw my hands up.  Thank you Jenna!!  Sounds like I'm giving my acceptance speech huh??  Seriously SB takes a team and we had such an awesome one guiding us along the way.  
I will say the only hard part of SB for us right now is the bladder and definitely her bowel.  It's so hard to get a set diet figured out and the girl loves her some cheese!  She is constantly pooping these little hard poops and then she'll have her opposite end of the spectrum, poor girl.  If only we could manage that part better then we'd be set.  I'm such a pro at cathing, I just have to say!  When we went on our trip to Kentucky I manage to cath her in the front seat in about 2 mins from start to finish without getting it everywhere, yeah Emma and I are a good team!  I still have my I hate SB days but I just hug her and remember she is an awesome little individual and she has overcome so I put my big girl panties on and deal with it!!              

Wednesday, March 10, 2010

Little Blessings

It's been a while since I've blogged but I've been meaning to sit down and write about the wonderful things going on with Emma.  She's getting close to 16 months old now and she is doing great.  I was hoping that one day she would just start walking and all my worries would go away, but in reality it doesn't take one day, it will take weeks or maybe months.  Patience, such a hard thing to have when it comes to your child's development.  We all want our babies to keep up with their peers and for the most part Emma has done just that.  I saw a comment from a mom on the board about the fact that when our babies are little, the SB part is really easy to overlook.  They're doing all the things a normal baby would do and it's not until they try to get mobile that you realize just how far behind they are.  That's when it gets tough as a mom to handle seeing other kids walking and running everywhere.  It grabs you in your gut and I just hug my Emma tight because I know someday, she'll be there. 

I have to say over the past few weeks I've sat down with her a lot and just watched her move and crawl everywhere.  Honestly, when I found out about her SB, my dreams of my baby being  "typical" went away and I just stopped thinking about her future all together.  I didn't know what she would be capable of so I just didn't go there emotionally.  At every turn she has pushed through any slight disability and has had her own agenda from the start.  I'll admit, walking has seriously stressed me out!  I have so many mixed emotions about it that I feel like I can't talk about it with everyone around me.  I hear the usual supportive phrases like "She'll get there" and "She's doing so good" but all I could feel was that she's not walking and don't try to make it easier, she's just not doing it. I guess I feel scared to get excited about her progress and I don't like feeling that way at all.  After all, I'm supposed to be her biggest cheerleader! 

She's had her moments where she takes a few steps in a row but then she'll stop trying all together for a while.  She loves to fall, it makes her giggle every time.  But we've been working with her, trying to get her balance better and making sure that she keeps those good shoes on her feet for support.  I still see her bad habits, especially when you hold her hand to walk with her.  She tends to drag her feet and not bend her knees and those little toes are pointed outward.  Today she took some major steps and it caught me completely off guard.  We were sitting on the floor and I had my neighbors over and she walks about 4 feet to my friend Stephanie and I could not believe my eyes.  But then to get her to try again was out of the question, she was done for the day!  But she did so great and I just wish her daddy was home when she decided to take off, it was so wonderful to watch!  I will have to tape a video camera to my body somehow because I can't miss that again.  

So I'm learning slowly but surely to take all of these little miracles in and enjoy every second.  I was cathing her the other day and thought this isn't a pain to do this, it's 5 extra minutes I get to spend with my daughter 4 times a day and just talk to her.  The whole process of cathing is just second nature to us now.  Then I looked at her crawling everywhere and I thought poor baby and those little worn out knees.  But some babies with SB can't crawl and I look at her clothes with the faded knees and it reminds me to always be patient, she's taking her own time and I'm so thankful for everything she is capable of.  I just love every second of it!  I will say I haven't figure out a positive spin on the poop situation.  All I know is that since she's been taking sorbitol and has a tendecy to "toot" a lot and then starts giggling like crazy, that's enough to make me smile.  The rest will work out in time. 

She has been such a blessing in our lives and she is quite the little comedian!  She comes up with something new everyday that has us all hysterical.  Madison said to me last night that she loves her so much and she just loves to laugh and have fun with her now.  She and Aaron both see past all of the worries and just have fun with their baby sister.  I try to do the same everyday and try to chase the worries away, seems to be working so far! 

Friday, February 5, 2010

Big step for mom

It's funny to sit here and read my own posts and realize just where my mind and emotions have taken me over the past year.  Up to the day of Emma's diagnosis, I  had never really experienced anything as emotionally challenging as I would soon be facing.  For me it was complete shock and disbelief.  I didn't know how to handle things and certainly didn't know how to feel.  I guess maybe I thought I was doing okay but in part, I was tucking those feelings away for another day.  I've been doing that with my emotions since we found out back in July 2008.  Occasionally things would bubble up to the surface and I felt like I handled it and moved on.  I didn't blog that much because they all had that "Debbie downer" theme.  Now that she's 14 months old and she doing great, I'm still emotionally stuck.  It's hard for me to let go of worry, always thinking down the road for her and forgetting to enjoy the blessings we see with her daily.  This past monday, in a new doctor's office with a complete stranger it hit me!  Guilt!  We were going through the questions for depression, which was my reason for going in and I immediately started crying when she asked me about my kids.  I've neglected myself for the past year and focused on everything for Emma and my older kids.  I didn't want to have any worries as far as my health was concerned, I couldn't handle that.  But a complete stranger, who had known me for all of 5 mins could see right through me. 

I knew all of this had started for me when we found out about the SB.  There was no rhyme or reason for why she had it, she just did and I couldn't change it.  I wanted so much to make it go away for her everyday that I was pregnant.  I'd read and read until I had read every article and journal they had out there.  But ultimately, I felt responsible and I have never fully admited that.  Was it my weight that caused it or something I was exposed to or the BP meds I was on?  I asked myself that so many times and no amount of people saying "It's not your fault" could make the doubt in my mind go away.  Monday that doc asked me if I felt guilty and I immediately said "Yes"... because well, I do.  When I read posts on the boards from other moms who are just finding out it makes me ache to think they feel to blame, but here I am harboring these same feelings of guilt!  It's so much easier to look outside of yourself than deal with any of your own emotions.  I felt like I took a step in the right direction on Monday.  I don't want another mom that goes through this same experience to feel like they're the guilty one.  My doc said something that will stick with me for a long time...."God just stitches us each up a little differently when he's making us".  We've had tons of discussion about the reasons but ultimately, God knew exactly what he was doing in Emma's life.  It has taken a long time for me to realize that and I feel like I will always have moments of doubt but we have been so blessed to have Emma in our lives, SB or not, I wouldn't change a single thing.  She has a smile that is infectuous and a giggle that makes her dad and I melt and she is trying everyday to show us how SB isn't going to keep her down.  So I can't let a little thing like depression keep me from enjoying such a beautiful life with my awesome family!!   

Friday, January 29, 2010

Spinning my wheels a little

Okay, so we had SB clinic today for Emma and I'm fighting the urge to come home and burst into tears!  I've really been looking forward to her appointment for a while, it seems like everything with her walking was riding on it and maybe today we would finally be getting her little feet some support.  She's been doing great and I'll admit sometimes I want more than I should with her.  She was born with Spina Bifida, am I expecting a speedy miracle or what??  Well yeah, I guess so!  Up to this point I've just been waiting thinking okay she'll either walk, or they'll go ahead with braces and it'll help give her strength so she can just do it!  She's been doing so good, really starting to stand for longer periods of time but I see that weakness for her and I just want to help fix it.  Isn't that what we moms do??  I just feel like we're at the same spot we were 4 months ago, but to a degree I understand the point the docs were making today.  Last time we were in clinic, Dr. A said "Okay, the next time I see you she'll definitely be walking"  and I thought wow, that would be so cool.  I'm sure deep down inside it was a promise to me and somehow it felt like a broken promise today.

No...there are no guarantees when it comes to this stuff and Emma is trying with everything she has but what if I'm not doing enough as her mom to help her?  I have to be her voice, I have to make sure they know exactly what's going on and how she's developing.  When it comes to SB, we've lucked out so far and maybe realizing that is part of the battle for me.  She doesn't have a shunt and I always wonder if we made the right decision or will her ventriculomegaly be something that will affect her later.  She's cathed, it's a pain sometimes, but it's helping her kidneys and it's keeps me going.  Her Arnold Chiari is not symptomatic and she definitely has movement in her legs!  The poop issue....hopefully we got a better plan today with starting sorbitol so we'll see.  From the beginning I've taken all this in and tried to make it better, for her, and for all of us. I want to wake up tomorrow and not think about SB...pretend there's no worry about the tiniest little thing out of the ordinary......just another baby thing and grin and enjoy my one year old, running up to me with a rock in her mouth, so eager to show me all the yummy dirt!  If it were only that easy right?        

Well, what we did learn at clinic today was that Emma's little feet like to pull upward and out and that is making it hard for her to walk and maintain that control when she takes steps.  By bracing her feet now, which the muscles are still supple, we would be slowing down her crawling and it's not for sure that it would speed up the process any.  Both the ortho and our physical medicine doc feel like she could benefit from braces but the questions is here we are at the old "wait and see" game again.  Which is mainly why I feel frustrated...but taking a cue from something I saw at Barnes and Nobles tonight......"Keep Calm and Carry On"...sounds like a plan!           

Monday, January 11, 2010

The absent blogger...

Well I don't generally get on here and type too much but I've decided that it's probably the most therapeutic thing I could do these days.  Life gets so hectic sometimes and it's all I can do to take a minute for myself to read, let alone blog.  Things with Emma have been going great, more wonderful than I ever could have imagined they would ever be.  She is such a sweet and funny little person that is so curious about her world and everyone in it.  She giggles all the time and talks in these huge sentences and of course, not a one of us can translate a single thing, but we smile and say "Yep, what you said!"  She just smiles with that adorable grin full of teeth now and it melts me.  How on earth does she have Spina Bifida??  Somedays I ask myself that over and over.  She is just like Aaron and Madison were as babies.  She's silly, she is so full of life, she gets into everything she can and she likes to tell me when I don't do things correctly and she gives the most wonderful hugs and kisses....she's such a perfectly normal baby!  Sometimes the whole SB experience, the scary parts at least, are passing memories to me and I like it that way.  Then there are days when I see something that triggers an emotion and it's just as fresh as it was the day we found out. 
Tonight, actually, I had what we have started calling an "I hate SB" moment.  I had given Emma a bowl of oatmeal because lately she just hasn't been eating good, too interested in what's on the counter and or what everyone else is doing, so I decided she could try to feed herself (or make a huge mess!) and maybe have some fun.  Of course the bowl was dumped and the oatmeal was smeared in a nice layer all over her tray and it was definitely bath time.  I stripped her down and cathed her (our usual before bath routine) and got her in the tub.  She was having so much fun splashing and playing and her sister was making her laugh too so she was having a blast.  She was in there maybe 5 mins and I noticed a little poop in the water.  Her bowels haven't been doing too great lately, very inconsistent even with juice.  Not really a huge deal but it meant it was time to get out and as I lifted her up she looked at me like she was so bummed because mommy was ending the fun!  I don't know why, but I just thought to myself, this is the parts I hate.  The little things that grab you and it's not even a major deal, something I would have never thought of with my first two.  Then I think, it's just poop......s%!t happens right??  Things could be SO much worse and we are so blessed with how things have turned out for her.  Some days the big "Is she walking" questions gets to me, other days I just smile and say "Nope, she's working on it".  I worry about her bowel management, I worry about her hydro, but other days I just enjoy being her mom.
Over the past few weeks, I have been watching Drew help Emma with her standing and I've never seen so much joy in his face.  I love watching the two of them!  She giggles when you try to get her to stand and in doing so, she will fall and laughs the entire way down.  It's so hilarious but at the same time we're trying to keep her serious so she can really try (what are we thinking right??).  I know for myself, when it comes to her walking, I've never had any grand expectations.  Everyone else we know is convinced she'll be cruising by next week but I just like to watch her and I know eventually she'll get it.  I thought I'd be so heartbroken when she didn't walk by one but now I just want to make sure I'm doing everything I can on my end to help her get there.  She's very confident when she cruises the furniture and even holds our fingers but the minute you let go, she'll fall.  She's also turning her feet out and lot and dragging them sometimes, things that we'll definitely be talking about at her next SB clinic on Jan 28.  But for now, just listening to giggles while she tries out her legs is enough for me, I love to see her little determined face. 

Sometimes I just have to keep my worries quiet and remember....she's doing great....she's not giving up!  As I'm sure Aaron would remind me of a quote from the penguins of Madagascar right now....."Just smile and wave and wave!"       

Monday, September 14, 2009

Catching Up

It has been FOREVER since I've posted anything on our blog, almost a year actually. WOW what a difference a year makes! We welcomed our little Emma Grace into the world on November 21, 2008 and it has certainly been a wonderful and sometimes stressful journey but there isn't a thing that I would change. To look at her, you would never know there was anything different with her, actually from the moment she was born she seemed to push forward. She continues to amaze us everyday and now she's mobile so there seems to be no stopping her! She started crawling...forward I might add....on August 31 and it was so amazing to see her little face light up. She had been going backwards for a while now and getting frustrated because the toys would just get further and further out of reach. Now she takes off towards everything and is getting so much faster everyday!

She recently had surgery to correct her tongue tie, which took everyone a while to figure out was even there. She had been sloooowly gaining weight and it seemed to come up at every doctor's visit and no amount of extra formula seemed to help because when she did nurse she was really having to work at it. But now that they clipped it, she's been doing so much better with nursing and has really blossomed since then. I joke all the time that they wheeled back my baby into surgery and brought me a different little girl! In one week she gave up her paci, started talking, stopped liking baby food, got scared of the dark and being alone and learned how to crawl!! She seriously had an agenda!

She's doing so great in everything right now and I feel like the closer we get to her first birthday surprisingly I'm getting more nervous! I think the anticipation of will she walk or won't she is almost always present in my thoughts and I find myself thinking about it more and more. She had a PT evaluation and for now they don't recommend any PT....again the old "wait and see" if she wants to try and walk. She has hyperflexion in her ankles and minimal heel cord tightness but she seems to be developing within her age range which is great to hear. We go to clinic on Sept 24 and we have a lot of questions this time. We've heard braces mentioned but she was so little last time and I'm hoping to get a better idea of when that may be a possibility. When you stand her up she doesn't mind bearing the weight on her legs at all but she puts her little feet together and really doesn't budge them. But she's got the crawling down pat and is pulling up to her knees, which scares her mommy to death!! But she's definitely got some motivation and I love seeing that.

As far as her bladder and kidneys go, we're still cathing four times a day and she's still doing well tolerating us. Our biggest issue right now is getting her to lay still, she wants to flip over! So we've got a few toys and things she loves to hold while we cath. I know soon those won't work and we'll be on to something new but for now it's working. I think we've got her bowel management worked out pretty well too. She drinks plumsmart juice and pear juice and they both really help out. As long as she's drinking a fair amount a day she doesn't get constipated.

Over all, Emma is doing awesome!! We worry about things non-stop with her and that will proabaly never change. I think our biggest obstacle has been learning to enjoy the wonderful moments and not let the "what ifs" get in the way of that. She is such a happy little girl and our whole family is completely head over heels!