Summer Time Fun

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One of my favorite things in the entire world is swimming.  I’m pretty sure, I’ve birthed my swim twin.  A couple of years ago, I bought Morgan a baby pool, just to see if she had swim legs.  And she absolutely took to the water immediately.  She seemed to love the water.  I mean she loved baths but having her in open water where she could splash around and move freely (well with one of us holding her), she took to it so well.  So I immediately ran out and bought every bathing suit and toddler floaters that I could find. We spent the entire first summer she was home, swimming and it was amazing.

Backstory –  About 10 years ago my dad built a pond in our backyard.  It’s a really nice feature but it creates a lot of mosquitos and bugs. I dislike it.  Then having Morgan…spending any time in the backyard has become limited to early mornings, cause by midday or later – every bug in a 50-mile radius is all over the place.  So, Last summer, we had a lot of issues with Morgan having bad reactions to mosquito bites and after seeing an allergist, they gave us cremes and meds to try and soothe them better. But being outside created a lot of issues so we spent time at other pools that were either indoor or larger outdoor pools.

Yesterday was the first time, I pulled the pool out for the season and she had a fantastic time. I love seeing her splash around. This picture is just one of about 100 that I took and I just adore how beautiful she looks.

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Within the last month, we found out that we could enroll Morgan in Aquatherapy at the HSCSN therapy center where she already takes Physical Therapy.  The hope is that because she’s still having issues with her muscle tone, that this can help loosen her up and make her more comfortable using her limbs. For those that have never heard of this type of therapy:

Aquatic therapy refers to treatments and exercises performed in water for relaxation, fitness, physical rehabilitation, and other therapeutic benefits. Typically a qualified aquatic therapist gives constant attendance to a person receiving treatment in a heated therapy pool.  Aquatic therapy refers to water-based treatments or exercises of therapeutic intent, in particular for relaxation, fitness, and physical rehabilitation. Treatments and exercises are performed while floating, partially submerged, or fully submerged in water. Many aquatic therapy procedures require constant attendance by a trained therapist and are performed in a specialized temperature-controlled pool. Rehabilitation commonly focuses on improving the physical function associated with illness, injury, or disability.

My hope is that it will give her some additional water experience too.

 

Peace, Love, and Swimming,

L’Erin

Pride

Happy PRIDto EVERYONE!

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Let me start this post by saying…damn is it good to have Pride. Pride in people being people. Pride in living their best lives openly and freely. Pride in being able to make choices. Pride in not giving a crap about what society thinks. Pride in acceptance. Pride in living lives that create and exude happiness.  Pride in being able to love who your heart desires. Pride in being comfortable in your own skin.  Because at the end of the day…Love is love, people should be who they feel they are and I’m a seriously firm believer in that.

Pride takes on personal meaning for me every year as I grow more and more accepting of my own Bi-Sexuality. And that story is for another posting.

When I had my own child. I knew that I wanted to be the type of mother, that was accepting. Accepting if she chooses to be a lesbian, or transgendered or bisexual or whatever she chooses. Life is hard enough and there are so many obstacles that we have to work and maneuver around that acceptance of who you are as a person, shouldn’t be one of them.  I know how this world works and so I know that everyone, will not agree with my choices to accept my child, however, she decides to go but she’s so important to me that I want her to know that I’m there for her, that I love her and that she is the most important human being in this world to me, so I’d rather accept and have her, than not accept and lose her.  

I hope that people can understand that.  

I’ve never understood, the parents that disown their kids. The religions that turn away people because of their sexual or life preferences (when everyone was created under the same God). The hatred that accompanies this lifestyle and the misunderstanding and unacceptance of peoples right to be different. The world would be a sad place if we were all the same.

Something cool, I found out about yesterday, was the fact that someone petitioned to add black and brown to the rainbow flag to represent “people of color”.  I heard on the radio that a lot of people felt like “The flag doesn’t need new colors” and that ” The flag represents everyone and doesn’t need to specify color”. I think the idea is cool but of course, adding two colors isn’t going to make a difference…I do believe that the flag should represent everyone and that rainbow colors do that just fine.

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I’m all about history and If you care to educate yourself on why PRIDE month is even a thing and about why June 28th holds so much mean know that:

Christopher Street Liberation Day on June 28, 1970 marked the first anniversary of the Stonewall riots with an assembly on Christopher Street and the first Gay Pride march in U.S. history, covering the 51 blocks to Central Park.  

The Stonewall Riots

Just after 3 a.m., a police raid of the Stonewall Inn—a gay club located on New York City’s Christopher Street—turns violent as patrons and local sympathizers begin rioting against the police.

Although the police were legally justified in raiding the club, which was serving liquor without a license among other violations, New York’s gay community had grown weary of the police department targeting gay clubs, many of which had already been closed. Soon, the crowd began throwing bottles at the police. The protest spilled over into the neighboring streets, and order was not restored until the deployment of New York’s riot police.

The Stonewall Riots were followed by several days of demonstrations in New York and was the impetus for the formation of the Gay Liberation Front as well as other gay, lesbian and bisexual civil rights organizations. It’s also regarded by many as history’s first major protest on behalf of equal rights for homosexuals.

Choose acceptance! Choose to allow others to live out the box! Choose to love instead of hate!

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Peace, Love, and PRIDE!

L’Erin 

(And FYI…I take being PRIDEFUL very serious. I had to buy these Nike “BETRUE” Pride edition sneakers because well…I love rainbows and I’m full of PRIDE)

We are Back…

I’m back and sooooooo sorry that I’ve been neglectful of Morgan’s following.

I’ve been having a lot of things going on and so time is never my friend.

I’ll have my new post up and ready in a few days and at least once a week following that.

I’m going to do better because this brand is super important to me.

It’s my munchkins brand and it’s got an awesome following and growing.

Morgan’s story and life deserve a voice.

 

Thanks so much for your support.

Check back for a new post.

 

L’Erin & Baby Morgan

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Toddler Mess

Somewhere around 1 is when I realized Morgan was more in touch with baby things than I thought. She would do little things that made me laugh, whine for no reason, twist herself out of her blankets and then…the true surprise was realizing that she loved to twist herself up in her clothing as well.

EXHIBIT A

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Short sleeve shirts, tank tops, anything without long sleeves or snaps and Morgan can find a way to twist herself up.  I don’t understand it. I don’t get it. She can’t lay in her bed without twisting herself up. It’s insanity. But this is the life of my toddler.  She will do it so quickly (like in the above) that most of the time, I don’t even know she did it. She will twist herself and then get so quiet that it – that’s the whole reason we have to check on her knowing she isn’t asleep.  What’s even more annoying is the fact that she twists herself up and then gets tantrum like with us when we untangle her.  Now I would never let her stay like that, but it’s tempting sometimes. I mean, how will she learn. Because at 3 years old. She still hasn’t.

EXHIBIT B

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Peace, Love and Twisted Babygirls,

L’Erin

About last night…

This post…this post is going to bring me to my knees.

Last night…my amazing 3-year-old…my vivacious 3-year-old, had a seizure. To even type that…kills me. To even have to say it, relive it, think about it, has caused a fear to come over me that I knew existed from our time in the NICU and realizing that life is precious, that my child’s life is precious and important and needed and that I can’t live without her, just a wave has swept over me and I’m sure I’ll be forever changed.

The Backstory

Mosquitos seem to love her. I mean every time she gets a bite, her skin has the worst reaction and she gets rashes and her skin swells and she looks like “Hitch” when he had the reaction to shellfish. Worst-Hitch

So we always have to give her something for those reactions. Usually, it is Zyrtec but we were out from last Spring and hadn’t purchased any. Her dad and I had reached out to our PCP (Primary Care Physician) late 2016 to ask about giving her something for these reactions and she suggested that in the most of severe cases, that 0.05 mls of Benadryl would be ok. So we’ve kept that little piece of information in the back of our minds, for when serious reactions happen.  Though any parent knows, that Benadryl has effects. It’s for kids 6 and older and there really isn’t an infant or toddler one because of how drowsy it makes kiddos amongst other things.

So Wednesday 6/6, I came home to Morgan, whose ear was the size of a kiwi. Swollen and red and seeping from the pressure and from her itching it. So we cleaned it and left it alone, in hopes that by Thursday, it would look better. That didn’t happen. Thursday, my mother called me to say that her reaction was worse and that her ear looked worse and that her itching had become more frequent. So, her dad and I made an executive decision to give her newly purchased Benadryl but still only the 0.05 mls. She slept with me that night and everything seemed fine. No issues…

Last Night

Fast-forward to last night… I feed Morgan her favorite (chicken) and some avocado for dinner around 7:45pm and gave her another 0.05 ml of Benadryl as her ear still looked swollen and red and was actually starting to get purplish bruising and scabs from her itching and digging in it. So, usually after my adult self-takes Benadryl, I usually have about 2 hours before, I pass out. So I decided to make a night of Mommy and Morgan cuddles in my bed again and so I could monitor her.  She fell asleep soon after.

Around 10pm, I was on the phone talking to my best friend and noticed Morgan had awakened and so I got off the phone and went to grab her a bottle with some water (as she was motioning to me that her throat was maybe dry). She was drinking her bottle and maybe 3 minutes passed before I looked over to notice her head was sliding off the pillow and that she was kinda kicking me. Not knowing, I said “Hey Baby, what’s up with you kicking Mommy” and grabbed her, but the second I grabbed her, I knew something was wrong.  And this is where, as I type…the tears are streaming down my face.

The instant, I picked her up, I knew something was happening. I’ve never seen a seizure. But I picked her up and she was ever so softly jerking, her eyes were red and glazed over and her small little hands were ridged and stuck in a position, I’d never seen her do. I instantly screamed for help. I’m crying and trying to help her and I was helpless. I run downstairs to her dad and start screaming to him that something is wrong with her. I had her over and the second, he says it…I went into a full panic mode. “L’Erin…she’s having a seizure”.  I had no bra on, pajama shorts and my phone and apple watch was on my dresser. I ran upstairs looking for something to put on and at the moment decided to say fuck it…fuck a bra and fuck these shorts…I had to get her to the hospital. My dad had already run to get the car. I’m crying and shaking and worried and panicked and for everyone…I AM NOT GOOD IN SITUATIONS. I PANIC…ALL LOGIC LEAVES ME AND I BECOME INSTANTLY TERRIFIED AND SCARED.

We get in the car and rush to Children’s. The same hospital that saved Morgan’s life 3 years ago and the whole reason she is here and the sweet baby girl we have today.

Again…I had no phone. No way to contact my mom, my best friends, my dad, no one and I didn’t even care.

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When we arrived, I was in full break down. Breakdown about why we were there, breakdown about what I just saw, breakdown about whether or not what she had just experienced would cause any limitations or have lasting effects or anything. I was freaking out and for someone who already suffers from anxiety…it wasn’t a good situation without having medication to calm my nerves.

As soon as we arrived the took us back. Because of Morgan’s history of prematurity, IVH, Hydro, and the shunt…they doctor came in immediately to tell us that we would be in for the long haul because a full workup of MRI’s, CT-Scans, X-Rays, and Blood work would be needed to determine the cause. I informed them of the Benadryl and at first, they seemed unphased by the admission.  Within the hour, we got the CT-Scan, MRI, and X-Ray done and the nurse was working on putting in an IV line for fluids as they decided she would be NPO (nothing by mouth) until they knew what was going on.  I sat cuddling her on the bed waiting for results.  At some point, her father and I switched, as I assumed he’d want some snuggles with her too and I needed to breathe. Too scared of what the results might determine.

Somewhere around 1am, the doctor came into to tell us that the Radiologist, The Neuro team and her had talked and they were all happy with the MRI, X-Ray and CT Scan results. Blood work work-up was still happening. But the Shunt was working, no blood clots and nothing that looked to be IVH or Hydro related. So for that, we were in the clear. About an hour later – the doctor comes in and says they are pretty sure they know what caused it…soon as she said it… I broke down and my heart broke…It was the fucking Benadryl. It was my fault. The doctor immediately told me it wasn’t my fault and that there was no way I would have known to account for the Thursday dose still being in her system and that the dose from Friday and Thursday together had cause the misfiring and caused the seizure.  But no one was overly worried anymore as they felt, that it had passed and that since she was back to herself and nothing was showing signs of damage or recurrence that we could either go home or they could admit and keep an eye on her overnight.

During this conversation with the attending physician is when we learned about yet another loophole that prematurity of birth can cause.  Benadryl has something in it that doesn’t react well to preemies. The doctor has seen it before but still before making any judgments, wanted to make sure Morgan was in the clear with everything shunt related before going with her original feeling – which was that it was just too much Benadryl in her system and it couldn’t handle it. As she explained, I cried. The wave of let down on my end…hit me like a brick wall. I fucked up and I take full responsibility.

Morgan

After the seizure, she was tired. I mean why wouldn’t she be. It was late, something she didn’t know about and couldn’t control had just happened to her. But she bounced back almost immediately to herself. She was right back to crying, screaming and batting her little sleepy eyes. But doctors confirmed to me that she would be ok.

My Thoughts

I have a lot on my plate. I have a lot going on. I have a lot of feelings and emotions, I am trying to work thru but despite all of that…the most important thing in my life and the person who keeps me moving is my daughter.

I would never…I repeat never ever do anything to place her in harm’s way. I would never purposefully do anything to hurt her. I certainly never meant to give her something that would hurt her.

The Guilt

The Fear

The Disappointment

I feel about giving her something that I thought was helping her but not accounting for Thursday dose making it 1 ml total that she had on Thursday and Friday is weighing on me heavy. I know better. I should have checked and re-checked our amounts. I should have known that it was too much in a 24 hour period. I should have known. My job as her mom is to know everything. To check and cross-check and re-check and double check and check again on everything going on with her. I failed.

The feelings of pure disgust I have for myself right now are overwhelming.

I’m full.

Peace, Love, and Guilt,

L’Erin

 

 

 

My Baby is 3…

People say all the time, that time flies when you are having fun. This is true. Time also flies, when you are a hardworking employee, student, daughter, friend, etc. and mother to a fast moving, quick learning toddler.

3 years ago, I would never have imaged that we would be here, celebrating Morgan’s 3rd birthday. I couldn’t see anything past the NICU and the first year of struggle.  But we’ve come so far as parents to her and she’s come so far as our vivacious 3-year-old.  May 31st will be my favorite day for the rest of my life because my whole heart & soul was born that day and came out in dramatic fashion at that.

Her father and I weren’t sure how to celebrate her turning the big 3 but what was completely off the table this year – was a big party. I couldn’t do it. I spent 1 & 2 planning big events and parties for her that this year…I was pooped out of party planning.  I wanted her to have a great day and to celebrate her in a big way but without doing a big thing.  So…the day came and we spent all day cuddling her.  It was also her first-day having on-site therapy with her new team at HSCSN and that was really exciting (though Morgan) disliked it.  We took her to dinner for her favorite meal…PASTA with Chicken (and I threw in some broccoli). It was an extremely amazing day. Happiness!

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We got her cupcakes from Sprinkles. and the rest was history.  I think she had a great day! Happy Birthday to my forever!

Peace and Birthday Love,

L’Erin

Crap…I’m behind.

So I haven’t forgotten about my blog. I’m exhausted, tired, exhausted, tired and even more exhausted.

Clearly, time is not my friend. But I mean when is it.  So, In the coming weeks…because typing out all my post has become a pain, though I have so much to say about things, I’m going to VLOG for a few weeks and also write a post when I have time.

I will find a fantastic place to VLOG at work and VLOG away. Be on the lookout.

A couple things I wanted to address in this first post in almost a month (sorry loyal followers)….I suck…I know.

Grad School

So for all those who follow me and have been rooting for my continued education…I passed my classes with A’s….YAY! and am taking a summer hiatus to relax.  Now though my learning never ends…I’m glad this break is on cause sheesh, I needed it. I’m so proud of myself for passing, for studying hard and finishing strong!!! YAYAYAY!

Morgan

She’s fantastic…But

Dentist Appointment – Last week Morgan went to her favorite place – THE DENTIST. No I’m kidding, she hates the dentist (much like her father). She screamed and cried and refused to act civilized but luckily our doctor is amazing. Bad news though – Preemie’s have calcium deficiencies and a lot of time the issues revolve around teeth and bone development. So with one of Morgan’s front teeth, a couple months of having it, it cracked and now sadly, the doctor wants to remove it to avoid nerve damage and because it cosmetically doesn’t look great.  I was really worried about her having to have this tooth removed but…luckily it’s not a permanent tooth. But she did great!!!! This is us below at the Dentist…

S’Mores

So I have no idea what kid wouldn’t like S’mores but honestly, I wasn’t one of them because as a kid, I hated Chocolate. Didn’t like the taste or flavor. As I grew up, I became more fond of it and have grown to like it.  I was worried because Morgan, is much like me and her dad in most situations and has a habit of not liking some of the same things we didn’t like as children. Well, I can cross S’Mores off because…. She loved them.

Therapy

I’m super sad to say it but two of Morgan’s amazing therapist that have been apart of our team for over a year are leaving us.  It’s always sad when we lose folks that are apart of “Morgan’s Team” and are genuinely amazing at what they do and love the kids they work with.  We’ve been extremely lucky at getting awesome providers and having folks work with our family that have been able to support, nurture and teach all at the same time.  Anyone who knows me, knows I’ve been very protected of who I’ve let her come in contact with and who works with her and It’s always hard when someone you’ve been comfortable with leaves.  I wish them nothing but success, happiness and continued work on their gift of working with kids with special needs. They’ve been a blessing.

Walking

Morgan and I spent about an hour yesterday in a huge parking lot walking around and she only moved for about a total of 10 mins and then stopped in her tracks.  I could barely get her to move at one point and so I stopped to take pictures. We were able to work with HSCSN to get an appointment weekly with a therapist that will be dedicated to helping her hands on with different equipment learn how to walk, so I can’t wait for that.

 

I will get better at updating because I have a lot to say and Summer luckily with work will be more relaxed.

Best,

L’Erin & Morgan