Mar8

March 8, 2014

Posted on March 8, 2014 by Larisa Megan

Hello, readers!
I’m sorry it has been what seems like forever since I have posted. I’m also sure you’re aware that Mia turned 1 in the end of January! That was rather emotional. Reflecting back, I couldn’t even picture the day in my head. Of course, those who know me know that tomorrow isn’t where my concern is. I have learned to live in the present, and wow, what a difference it has made. I’m actually happy. I’m happy inside. It feels like it has been an eternity since I have felt serene inside. The turmoil has settled, I am at peace with who I am, and more importantly, who I’ve become. I find myself legitimately smiling out of happiness multiple times a day. That is something that can’t be given from one person to another, and something money cannot buy.

One of Mia’s favorite thing to do is watch The Lorax, so we had a Lorax-themed birthday party at the local pizza joint. My nephew, who turned 9 in February, was there and opened Mia’s presents for her. She looked at and touched every single one of them like she was seeing and feeling something she’d never seen or touched before. She held the cards filled with birthday wishes like she was reading them all, and storing the sentiments in her head and heart. It was so amazing to watch. She is so hands-on. She likes to feel textures, and touch things. My boss always wears a beautiful pin on her jacket or vest, and Mia extends her hand to run her fingers over it but never grabs. You can often find Mia running her hands over blankets, stuffed animals, or even down the side edge of her car seat. She is such an observer. Her whole world around her, however large that radius is, is always new, always special, and always fascinating. I must have taken a lesson from her. The skyline outside my bedroom window is even new. It’s always a good sign when Louis Armstrong’s “What a Wonderful World” hits the nail square on the head….

Back to Mia –
She has learned a few words:
brother – bluh-luh
lemur – leelur
clap – ah-lap
strap – thlap (car seat buckling)
lamb – laaahl
and what we think is “love you”.
She also plays a few social games, one of which she sticks out her index finger and says “ligh-th” and expects you to stick out your index finger and engage in a game of “Light Saber” fighting. She can identify your hair when asked, and she will also point out your nose when asked to do so. She knows where sissy(s), brother, mama, nana, and auntie la-la (my coworker) when asked.

On her motor skills, she is doing better. Progress is progress. She had a visit with a child developmental specialist 2 weeks ago, and she stated that her only concern was Mia’s gross motor skills. Other areas of Mia’s development weren’t concerning. She suggested seeing their occupational therapist and the programs’ physical therapist. They both come to town 1 time a month, and they alternate so one of them is here every two weeks. Mia had her first visit with the physical therapist last Thursday morning, and she gave me some games and instruction on things to do with/for Mia that will help her hip and shoulder tightness. Just in the last week, she has begun rolling over without any help. She doesn’t do it often, but she does it! I don’t have any growth stats to post, her 12-month check up is next week. A little late, but her pediatrician is one busy woman!

Now for pictures!

Jan1

Happy New Year! January 1, 2014

Posted on January 1, 2014 by Larisa Megan

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Happy New Year friends!

Mia is 11 months old now. All I have to say is that time flies when you’re looking at her sweet face. Looking back in photos from mere months ago makes me realize how far she has come. Such a beautiful little soul I have on my hands.

We had a visit with her neurologist a few weeks ago. He says overall, she is looking good. She has some muscle tightness in her legs and arms and will be going back in May to be evaluated by a ‘team’ for further diagnosis. We are still at the same spot, gross-motor wise. She’s sat up a handful of times for close to a minute, and has rolled out of her boppy a few times, but doesn’t seem to have the desire to be mobile. If a toy is out of her reach, she moves on to the next toy. On December 14, her first tooth broke through her gums! She was mildly fussy for about 6 hours prior, but nothing too eventful. On the 21st, Mia was looking listless and running a slight fever. Her brother had come home 2 days prior with strep throat, although he’d been on antibiotics for days before coming home. I took her to the local walk-in, and they said her tonsils looked red, but strep wasn’t suspected. I pushed for the quick swab test, and sure enough, it came back positive. Go me! The poor lil biscuit ended up on antibiotics but was back to her laughing self within a day. Yesterday, her 2nd bottom tooth came in, again preceded by a few fussy hours.
She is very sweet, always smiling. She loves to babble, and sometimes screams. She tries to say “ma-ma”, but it comes out “blah-blah”. She melts my heart.

There were quite a few things that happened in November and December. In November, we got the pleasure of having lunch with Mia’s friend in HoPE and her family, we got another great photo of me and my kids, and Mia went to her first family wedding (my nephew got married, it was so beautiful!). In December, Mia experienced her first snow, got many presents, and we had a very quiet family holiday. A calm, loving ending to an otherwise stormy year.

On a personal note:
I didn’t write her 10-month blog. She was doing so well, and yet, I was not. My heart was in a blender, and thus surrounded by negative influence. I still can’t understand what would cause one human to be so, um, un-human to someone. If we aren’t lifting one another up, aren’t we just letting each other fall?

It’s so hard to let go. You’d think that negativity would be the easiest thing to put in the bubble and float away, but there are too many stages. It’s hard (and I bet damaging) to re-live the anger that comes from being torn apart on the inside. Anger is such an evil thing. Why do we feel that burning in our chest that signifies that someone has gotten the better of you? Anger is a fire that only burns the angered. I say we vote that feeling off the island. Yesterday.

The fires of the past years still burn. There was a lot to stoke that fire. The flames, while diminishing, aren’t quite coals and ashes just yet, but they’re getting there. It’s from those coals and ashes that I’ll rise. Once the fire has cleansed, nothing will stop me from being me, and everything that makes me who I am. I am not who I’ve bent and ultimately broke, to be. I am so much more.

Another internal struggle I’ve been dealing with is wondering where I fit. Where I belong. How I identify myself. Single mom? Special needs mom? Just, mom? While I feel that I identify with a large spectrum of people, it’s on different levels, and with different things… While I realize that’s the norm in most situations, it’s intensified horribly when something isn’t “normal”. I feel lacking sometimes, which is a valid feeling, but also one that shouldn’t be dwelled on… Can I be vaguer? Probably, but the point is, I’ve forgotten how to relate to people in general. Something to work on.

*************

I’ve also spent a lot of time contemplating and reflecting recently. I thought back to my experience of being pregnant with Mia. How I cried myself to sleep, wondering what I could have done that was so horrible that it brought this fate on me and this sweet baby. I felt I had done something wrong, and that I must have been an awful person.

Oh boy, oh boy, did I have that theory backward. I cried for all the wrong reasons.

Just when I thought karma was biting me in the ass for something, it turns out I was receiving a most precious gift. I must have done something amazingly right with my life to end up with Mia as my daughter. She has been the light that guides us, the reason for extra smiles on our faces, and more hugs and affection than I ever thought I possessed. I feel closer to her sisters and brother, I feel closer to my mother, and closer and bonded to family and extended family through Mia.

Sure, I still cry myself to sleep when I think about the big picture, but it’s tears of sadness mixed with lots of joy. I can’t help but choke up when a parent finds my blog and shares a personal story about their pregnancy or baby with me. It feels amazing to pass along resources and offer guidance to those in need. Mia gave me a catalyst to help others. She’s given me strength when I felt there was none. She’s given me a backbone when I had caved to the idea of living in a void. I don’t even think a million dollars falling into my life could replicate the feelings that come with being who I am. Mom is the greatest title I’ve ever held, and I’m proud to say that I’ve upheld it for nearly 19 years. I have all my kids (and my FANTASTIC mother) to thank for making me who I am today, and I will be eternally grateful to all of you. You are my (insert list of everything essential to living here). I love you all so much. 😉

I have some exciting news coming up, and I will post a blog about it shortly.
Here’s to looking forward full of HoPE in 2014.

Now for the frosting on the blog cake – your 10/11-month-old pic fix.
Cheers!

Oct30

October 30, 2013 – Happy 9 months, Mia!

Posted on October 30, 2013 by Larisa Megan

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Mia Baloo! Nine months old? Wow.
I’m excited to share that Mia is now over 18lbs! My growing lil biscuit.

This past month was full of road trips! We visited auntie and uncle (my sister and brother-in-law), went to an appointment for sister, and went to a check-up appointment with Mia’s new pediatrician! I was impressed, to say the least! She listened to our previous experiences and addressed my concerns objectively, all the while reminding me that she is there as a resource for us, not to tell us what to do. Mia was due to have her sodium and thyroid checked, so we had that done at the doctor appointment. All her blood work came back all within normal ranges. I knew that blood test was coming, and I was holding my breath a little over it since she was released from the NICU.

Not much has changed, gross motor skills wise, since last month. She sits ‘folded’ a little longer these days, and eats a little more solids. She just had steamed green beans for dinner. On the chatter forefront, she screams and hollers most of the day now. If you scream and holler back, all that follows are some hearty belly laughs and giant grins! She mouths words and syllables back at you but has yet to put a voice to the mouthing. We’re getting there!

She is still such a sweetheart. So loving and smiley and rarely does something upset her. I keep telling people that she is “the perfect hip-pocket girl”. Goes everywhere with me, and never without her smile. How lucky can one family be? I’m thankful every day for her, and for all the things she has brought to my life, and that of my family.

~~~~~~~

On a personal note:
Last year, I wrote about a person in my life that was a hindrance, that was unsupportive (to say the least) and that I had to ‘back seat’. I was not emotionally equipped to deal with him until a time where my mind was free from my health, from Mia’s health, and free from the emotional roller coaster that was the pregnancy. After Mia’s blood draw came back normal, my mind was free.

I analyzed everything I’d been through, the cheating, the lies, feelings of being totally lost and so alone, and left to navigate uncharted territory myself. Left by someone who promised to always be there. I realize that people deal with things differently, but alienating those who need support is against everything I stand for, everything I believe, and not just as a person, but as a human.

I tried to reconcile and forgive. I’ve gone above and beyond to try to repair mountains of trust that I did not break. It was ill-received. I walk with a new sense of self and a strong sense of purpose now. I have forgiven him in my heart for leaving me when I needed him the most, but I will not make any more time for him, and will not expend a single drop of my energy or attention when it is useful (not to mention well-received) elsewhere.

What’s done is done, and these past few days, I ceremoniously doused the rubble of the relationship with the proverbial gasoline, and I set that bitch on fire.
Good riddance, pain in my heart.
Good riddance, stress of being something I’m not.
A hearty good-f**king-riddance to being emotionally alone, while not physically alone.
It seems I’ve not only laid fears to rest in the last few weeks, I’ve also laid the hell that has been the last 5 years of my life to rest.
May they rest in peace in the depths to which they’ve been sent.

I took a good, hard look around. Our lives are filled with hugs, support, acceptance, and more love than we could go through in 3 lifetimes. We lack nothing.

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I’d like to thank everyone for their interest in Mia’s journey through life, and for the outpouring of support and HoPE we have received through the blog and other social media. You are our sunshine!

Cheers, my dears!

Oct16

Mom and Torin took Mia to her appointment today, 17lbs 14.1oz, 27.16″

Posted on October 16, 2013 by Larisa Megan

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Sep30

8 MONTHS?! Where is time going?

Posted on September 30, 2013 by Larisa Megan

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Hello, everyone!
She’s EIGHT MONTHS. That’s 2/3rds of a year!
I’ve been so busy with my little mini-me that I have only been able to post once a month. I always figure the old ‘no news is good news’ adage. In between posts, I am taking some much needed time to reconnect with my family. I have to say I was lost for a while, I became someone I did not recognize in the mirror, but lately, it’s all coming back to me. But enough about me…

Earlier this month, Mia had a visit from her early intervention nurse and was 17lbs and 26-1/2in. My little gnome is growing! She has been doing really well. She rolled from back to front a handful of times, is sitting assisted, or folded forward, and stands for a few seconds assisted, but soon her little noodles give out. Same with her arms. Her fine motor skills continue to be very impressive.

She still eats well, but she mostly has bites of whatever I’m eating. She doesn’t have ‘meals’. She won’t pick up food that is presented to her, but opens her mouth like a little bird and happily chomps on whatever I offer. She will eat packets of food, or out of her silicone feeder, but just hasn’t gotten the concept of picking up food bites and putting them in her mouth…

I’m under the impression she’s been teething as well, as she has needed some extra comforting lately. Her gums seem swollen, and some days I think I see a tooth bud, but it disappears just as quickly as it showed up.

I am happy to report that I have found a pediatrician that I think will be a good match, for both Mia and I. Her first appointment is on the 16th. I am very excited, although I’ve been busy gathering paperwork and copies of documents I think she may need. The only downfall is that she is an hour away, but then I remember that I live in a small town and that some people commute longer than that to work on a daily basis, which only makes me grateful that we have such a beautiful drive. Ah, the little things.

Happy 8 months, you precious, sweet, amazing baby girl. You are so loved.

Now, I know what you’ve all been waiting for, so here you go. Your September pic fix. Cheers!

Aug30

7 Months!

Posted on August 30, 2013 by Larisa Megan

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Happy 7 months, Mia!
This past month has been so full of happy times and fun things!

Mia has started eating solid foods! So far she has had avocado, sweet potato, chicken, turkey, squash, banana, egg yolk, mango, peach, carrot, watermelon, applesauce, and pear. She just has a few bites daily, no specific routine. It’s usually around dinner time, and she has bites of whatever I have. She has a silicone feeder that we load up, and she holds it and feeds herself.

I have decided to hold off on all grains until she is at least 18 months. HPE kids tend to have production issues when it comes to enzymes and I’d like to make sure she has enough pancreatic amylase to break down the grains. If they aren’t broken down properly, they aren’t digestible. I will do anything and everything in my power to not upset her digestion, as it is working just fine right now.

So far she has a delay in gross motor skills. She is no closer to sitting or crawling than she was a month ago, however, her fine motor skills are super! She picks up large and small objects, transfers from one hand to the other, will take things out of your hand, etc. She loves to rub her hand along surfaces and feel textures.

She also loves to converse. She will ‘talk’ to you, and if you talk back, she seems to think about what you just said, and then respond. She will go back and forth for about 3-5 minutes at a time. She has found her voice. She screeches, hollers, chatters, and my favorite, whispers!

Her unofficial weight is 18lbs and her unofficial height is around 26″. I say unofficial because I did them this morning. She has her early intervention nurse visit next Friday, I will update ‘officially’ then.

The highlight of our month was meeting another HPE family! They were vacationing just up the coast from us, so we drove up for breakfast before they headed for home. I wish we could all live closer together, as we are all in a family of our own. ❤

I want to thank all our friends for reading. My goal is to create awareness about HPE, and to help others who may be in a situation that was similar to where I was at one point in time – confused and somewhat at a loss with only a diagnosis and “Dr. Google”.

Being Mia’s mom has put a tremendous amount of purpose in my life.

I have gone overboard on pictures this month, but no one ever seems to mind. Cheers!

Aug5

A few pictures from Mia’s 6-month celebration

Posted on August 5, 2013 by Larisa Megan

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Happy 6 months, Mia!
Thank you to everyone that came to help us celebrate!

Jul31

Just had to share!

Posted on July 31, 2013 by Larisa Megan

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We gave Mia some avocado in her mesh feeder last night as a treat for her 6-month, and she LOVED it! I was going to skip puréed foods and go straight to solids in a few months, but it looks like her mesh feeder is her new bestie! She had so much fun eating it that I had to share some pictures! =D

Jul30

Happy, Happy 6-Month Birthday, Miss Mia Baloo!

Posted on July 30, 2013 by Larisa Megan

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Statistics say that 3% of babies with holoprosencephaly (HPE) make it to birth, and 1% make it to 6 months old.

Dear Mia,

Today, July 30, 2013, you turned 6 months old! You have no idea how excited your family and friends are for you, as you sit in the swing next to me taking a nap (a much needed one, at that!). Your smiling face and bright eyes have brought so many smiles to so many people’s faces and hearts. You are an inspiration to many.

I feel so blessed that you have not needed any medical intervention thus far. I thank my lucky stars each night as I watch you fall asleep, and when I wake up in the middle of the night, I feel so privileged to be able to lean over and kiss your sweet little forehead and cheeks. Watching you do all the little things that most parents take for granted, like grabbing toys and chewing on them and turning your gaze toward someone calling your name from across the room, make my heart swell. You can roll from tummy to back, and when sitting forward, you can use your awesome core muscles to sit back up, we just aren’t to the point where you’re holding steady, but we will get there! Remember, you’re a Weeble! Wobble, but don’t fall down!

Everyday since you were little(r), I would sit you on my lap and help you ‘gimme five’. Well, yesterday, I put my hand out and said “gimme five”, and you did! Repeatedly! Your sisters and I giggled in delight as you kept doing it! You have also started to use consonants. I’ve caught you saying “na na na na na na na na na” a few times, and don’t worry, we will be teaching you to end that with ‘BATMAAAAN!’. Chewing on handfuls of my hair has also become a new passion of yours. You can always tell when I’ve been holding you, I can be seen with decent-sized rat nests where my hair ends used to be.

You’ve had lots of cousins come visit the past few weeks because they can’t make it to your party. You’ve had much fun interacting with people your size! Grandma has been having fun sticking you in my old outfits and comparing pictures!

You are such a beautiful, amazing little girl, and you don’t even know it yet. You always seem to have something to say, and I look forward to the day when you learn to form words with that sweet little voice.

On July 20, your HoPE butterfly joined the ranks with your sisters and brother’s butterflies on my left shoulder.

I bet you and some other people are wondering why I call you Baloo. It has to do with the day you were born, and the fact that you didn’t need any medical attention, just the ‘Bare Necessities’. You became my little Mia Baloo that day.

I love you, Mia Baloo.

Love, Mom