Sunday, December 28, 2014

A, Bee, C, Da-da...and T is for Taylor Swift

It's weird to even assume that Mila has any "favorite" things considering she has little dependency on anything except Michael and I, but she continues to pleasantly surprise me.  Watching her fall in love or cling to anyone/anything are extra sparks of hope for me.  A hope that she will have some "typical" traits.  I'm not saying I want her to be like everyone else.  I'm not saying I hope she becomes a typical kid.  Watching her change and grow in ways that are recognizable...ways that are socially acceptable, give me hope that she will thrive in society, make friends, and connect with the world around her.

B is for Bee.  Mila was given a stuffed bee for her 2nd birthday.  She would occasionally play with it, but it mostly sat on her bookshelf for months.  I can't even remember when exactly she began to connect with this bee.  She holds onto it and shakes it for hours (there's a bell inside that rattles when shook).  She'll go face to face with it and chatter.  She started initiating play with Michael, wanting to throw this bee back and forth.  It quickly became her favorite, never ending game.  It's one of those things you don't mind playing for a few minutes, but when you're approaching the 30 minute mark, you're hoping she'll become distracted with something else so you can hide that freakin bee! Haha! It's pretty sweet how connected she feels with her bee :).

D is for dada.  As you could tell it was daddy in every bee pic...well, that's because dada is her second favorite thing!  She keeps her eyes glued on daddy when he's home.  He can't leave the room or go downstairs without her crying and yelling. Yes, she actually fusses and raises her tone a few octaves.  You can't understand anything she is trying to say, but it doesn't matter.  She's so damn cute when she tries. I usually try to console her, but she would rather sit in the floor and wait for him to come back.  It is daddy who always gets the first bee toss.  It is daddy who gets the recognition.  It is daddy who gets chased down.  While at times it hurts my ego just a little, I can't help but be overjoyed.  Mila's starting to understand.  Mila is starting to get it.  The way Michael lights up every time she says "dada" or seeing him melt when she cries for him...the sweetness is unbearable at times.  It's ok that "mama" is an unfamiliar, difficult sound for her to make.  I've heard to before and I'll hear it again.  For now, I'll just sit back, watch, and be so thankful for these moments I get to witness.

T is for Taylor Swift. Her "Shake it Off" phenomenon has swept through our household and probably won't simmer anytime soon. I decided to pull up the video on youtube shortly after the song hit #1 to see what all the fuss was about.  Well, at sound of the first note, Mila was glued!  Bopping her head back and forth faster than ever.  Squealing and babbling.  Smiling so hard it seemed as if her cheeks would hurt when the video was over.  Music is her driving force.  It feeds her soul.  It breathes life into her. We watch her video everyday.  Countless times a day.  Out of the 400 million views, I'm sure we're half of those! If anyone knows someone, that knows someone, that knows Taylor Swift, please let her know we would like to meet her attend one of her concerts next year :).  I'm pretty sad Taylor won't be coming to Colorado or anywhere within driving distance in 2015.  I think her concert would be perfect for Mila!  
Taylor Swift dreaming

Tuesday, December 9, 2014

Hearts For Horses

I am so sorry I have not been updating regularly.  We've been traveling, battling viruses, I've been finishing school for the semester, and doing our usually daily grind.  I really hope to post Mila's progress more frequently.

I can't even tell you how fortunate we have been in finding the BEST therapists Colorado Springs has to offer.  Jamie (OT in Hippo Therapy) is so patient, happy, kind, and I can tell she loves every child she works with.  The progression Mila has made in a few short months has been amazing to watch.  I feel overwhelmed with joy when I stand in the arena to watch her ride.  She is always happy, but if you really want to see her eyes sparkle, put my girl on a horse.

Mila's first ride was filled with nervousness, fear of the unknown, and typical sloppy body mechanics. She would lean forward, pressure through her hands, which was to be expected.  Jamie would hand her rings to allow her to focus on engaging her core to maintain her posture.  Four weeks in, Jamie ditched the rings for holding, and Mila was sitting perfectly straight, swaying back and forth with the stride of the horse.  She would ride forward, backward, and sideways without fuss.  Now about 8 weeks in, she is riding on all fours (hands & knees), assisting Jamie when it is time for position change, signing "walk on" by patting the horse with her hand, and a few weeks ago, she rode on her knees (while sitting upright with arms in the air), and on her belly.

We have missed a few weeks due to sickness and vacation, but time off doesn't change Mila's motivation and determination to progress.  With Hippo Therapy she is getting all therapies wrapped up in these big, beautiful creatures.  She has been so vocal since she began riding.  Every syllable you can imagine, with a lot of "dada's"!  Her motor planning is improving.  She can stand for long periods of time, cruise forever, and is using correct body mechanics when exploring.

Sometimes I have no idea what to expect from Mila in terms of her function.  A year ago she would develop new skills and lose them within weeks.  Now, she picks up things so quickly and hangs onto them.  I think she needed some time to develop.  Time to get older.  Time to mature. 
Perfect posture while making choices on the iPad with Katie (speech therapist)  
Barely holding on while standing in the stables (sand floor challenges her ability to balance)

Taking turns & imitating Sarah (PT) by grabbing a letter and moving it up to the top of fridge, while standing :)

First attempt at putting a sock on...EVER!

She's not fully convinced she likes a new way of riding through Target (practicing new ways to balance & use that core)

We continue to relish every moment.  Michael and I battle over who will notice the next "new" thing Mila does.  I love that he watches her and notices change just as much as I do.  With holidays coming and going, we're soaking up every moment the three of us can be together.  Michael's job has been kind to him the last few weeks, and I hope it will remain that way.  We are starting new traditions and taking on new adventures any chance we get.  We recently went up to Estes Park up in the Rocky Mountains and it's too beautiful not to share a sneak peak of our fun :)
Post Thanksgiving festivities 

Our first snow hike in the Rockies

Our Party of 3

Thursday, October 2, 2014

Fall~ A Love Hate Relationship

Brisk nights.  Anything and everything pumpkin.  Apple picking.  Long sleeves.  Jeans.  Boots.  Red wine.  Flu shots.  Snotty kids.  Random Viruses.  A trip to the Emergency Department.  Although, we didn't plan on ringing in the month of October with a very sick Mila, I am so grateful for modern medicine.  Mila has been sick more times than I would like since we have lived in Colorado, but she managed to fight the bugs off every time.

She has been sick since Sunday night with an upper respiratory virus...some version of the crazy enterovirus!  We've had a few sleepless nights, but with all the snot and nonstop coughing spells, Mila has been her usual happy, sweet self.  Her appetite even dwindled some, but she was still drinking adequately.  Side note...Michael and I are psycho about her drinking even when she's 100% well.  Since she's nonverbal and doesn't tell us when she's thirsty, we're always shoving drinks at her. 

Tuesday night we continued our ritual of saline spray, steamy bathroom, warm bath, and Breathe essential oil on feet and chest.  She went to sleep pretty quickly and didn't hear any coughing.  I checked on her multiple times and no gurgles of snot.  I didn't sleep in her room that night since all was quiet when I went to bed.  I got up Wednesday morning around 8 and she was snoozing hard.  Felt her head and temp.  9, 10, and even 11am rolled around.  As each hour passed, I thought for sure she would be waking up any minute.  I trumped this sleep fest up to her "recovery" phase and knowing she had done this one time before (post virus),  I wasn't crazy concerned.  At 11:38 (15 hours of sleep) to be exact, I went in to wake Mila up.  She slowly aroused.  No smile.  Eyes open but no eye contact.  She didn't seem ready to get up.  I hunched over the crib, rubbing her back and playing with her hair while talking out loud about how she had sleep the entire morning away.  With almost 10 minutes passing, I thought, I'll leave the room.  She always gets upset if I don't pick her up right away and leave the room.  I look back after crossing the doorway and she hadn't even noticed I left. Waiting close by, she gradually pulled herself up to a standing position.  Her head was wobbly and she was staring off into space. I started to get a tiny knot in my stomach, but convinced myself she is totally fine.  

I picked her up from the crib, her body just kind of slumped onto my shoulder.  At this point, its feeling awkward.  I stayed calm and laid her on the floor to change her diaper.  Her little limbs were like limp noodles.  Her muscle tone had reverted back to exactly how she was as a baby.  Her head is to the side, eyes glazed over.  I'm talking to her...raising my tone with each word...talking...talking...and to the point of yelling at her.  I swear her blinks were 30 seconds long.  At one point she turns to face me, but is looking right through me.  As I'm yelling at her to hope for some kind of response, it felt as if she wasn't even there.  Mila is the kind of girl who is sensitive to a loud tone whether it is pleasant sounding or not. Tears are falling as I continue to yell at her.  Her feet are the coldest I have ever felt.  Cold and almost gray.  Her capillary refill was delayed.  I couldn't find a pulse.  Her breathing was not compromised, but her distal circulation was crap. For a split second, I thought maybe I can't feel her pulse in her feet because its been too long since I've assessed someone...or maybe because I'm in panic mode and my trembling won't allow me to feel anything. I knew something was wrong.  I immediately thought she had to be dehydrated.  What else could it be?  I thought for sure she was going to have a seizure right in that moment.  

I paged Michael with our first 911 message.  I scooped her up and my phone immediately rang.  Im hysterical, telling him something is wrong with Mila.  I gave him the full story.  He's pleading with me to stay calm.  "Is she breathing?"  Really, that was his first question.  I'm kind of giggling as I type this because I definitely would not have called him first, had that been the situation.  "Whats her color like?"  "Can you feel a pulse?"  I'm pacing with my phone on speaker, cradling her, trying to feel for adequate circulation.  Obviously, she had blood circulating.  Her radial & brachial pulses were fine. He's leaving work as we're speaking.  I sit down on the couch with her to try and get her to drink.  Still not appropriately responding, she actually was sipping her cup if I left the straw near her mouth. If anything were to change before Michael got home, I would leave with her immediately.  

She's slowly sipping.  Her feet look like crap.  Even in my "calmer" state, her pedal pulses were really faint.  I called my friend, Catherine, who is also a Pediatric Nurse Practitioner.  Thank God she answered.  Going through the scenario with her and my panic plea, she said I had definite reason to be concerned, but to call Mila's pediatrician to see if they administer fluids.  It was perfect timing-insert sarcasm- the office was closed for an hour and a half for lunch!  I should apply for a job.  I knew there was no way in hell I was waiting that long for her vitals to be taken, and for them to possibly tell us they don't administer IV fluids.

We drove across town to Michael's sister hospital and luckily the ED was pretty empty.  That was, until about five minutes after we signed in.  I hear the triage nurse say, "We have a TIA, a head bleed, and man vs tree that just walked through the door."  They all three literally walked through the door for treatment.  I knew at that moment it would be a while for her to be seen.  Luckily, she was still willing to drink for us.  She had almost 32 oz over a few hour period.  Although she was still heavy eyed and groggy, my baby finally looked at me.  She really looked at me!  Her movements were starting to become voluntary.  Despite her efforts to drink and respond more appropriately, we knew she needed fluids we couldn't give her.  Our wait didn't continue for too much longer.  The nurses got a urine sample without having to cath her (Mila decided to pee a fountain while they were prepping her, and the nurse literally caught some mid stream in the test tube), and they also got a great IV on their first attempt!  Hallelujah!

Mila got 500cc's of fluid, had no UTI, and her electrolytes were normal!  Praise God!  It is amazing how dehydration can affect ones ability to function.  A sick Mila is not fun.  A Mila who doesn't respond to the one person she doesn't want to be without, is terrifying!  Things could've turned even worse in a matter of minutes/hours.  Im so glad I didn't let her sleep any longer.  In fact, I'll never let her sleep that long ever again!  I'm grateful for modern medicine, my motherly instincts, friends who support those instincts, and Michael's calming nature. I hope we never re-live that moment again.

Monday, September 15, 2014

2014 Global Genes Rare Patient Advocacy Summit

Awareness.  Activists.  Empowering.  Energetic.  Powerful.  Positive.  Emotional.  Surreal. These are just a few words that come to mind as I reflect on an amazing weekend filled with so much hope and love.  The Global Genes Project pours their heart and souls into Rare Disease awareness, and I feel so honored that I got to be a part of it.  I wasn't sure what to expect, but I was really excited to meet new people, gain resources, learn anything that could help me help Mila, and have a few moments by myself.

The weekend kicked off with a seminar that is something I struggle with everyday.  Taking time for myself...realizing that I'm not alone.  It's about balance and being the best mom and caregiver I can be.  Whether you are a working parent or a stay at home parent of a typical or special needs kid, we all need to take some time for ourselves.  A moment to renew and refresh our minds.  I definitely recognize the need for myself, but when my waking moments are devoted to Mila, how do I find that time?  It's definitely a work in progress.

I was thrilled on all the info and tip given for fundraising.  There were several inspiring parents who have developed foundations in honor of their child, or become president/CEO of companies who selflessly serve the rare disease community.  They had so many tips and words of encouragement for my future goals.  They are the true activists.  I look forward to keeping in touch with them and reuniting next year.

While trying to attend several sessions at one time, I managed to squeeze into the parent to parent chat just in time.  In fact, just in time for the head speaker to turn to me and ask for Mila's story.  Can I mention I stood against a wall...kind of to the side...yet still in front of everyone.  Have I ever mentioned I don't do well speaking in front of a crowd?  Well, mix fear of public speaking with my passion for Mila's life, and you've got a red, teary eyed, blubbering mama!  I think I managed to get four or five words out before the tears flowed.  I didn't say half of what I wanted to say.  I'm sure I skewed Mila's story, yet every parent sitting in front of me could feel my joyous pain.  Joyous pain sounds weird, I know.  The verbal story telling and reflecting of Mila's journey, sparks a grief that will forever remain.  Yet, I burst with joy when I think about what she has overcome.  Her inner strength is like no other.  She fights and progresses.  She is incredibly happy all the time.  She has a gentle soul and a smile that never stops.  She is AMAZING!

The Global Genes Project invited me as one of their guests to the Gala, which was the last event of the weekend.  I didn't hesitate for a second to accept their invitation!  I rented a designer gown and jewelry, bought some four inch heels, and dolled myself up for the evening.  It was a blast!

I got to reconnect with some parents on a different level from previous days, and witness the impact so many individuals have made in the rare disease community.  There was a strength in that room that was a force to be reckoned with!  I was so fortunate to be present and soaking up all the possibilities of the difference I hope to make one day.

The weekend would not have been possible without my cousin, Allyson, who lives in southern California.  She didn't hesitate for a second to take care of Mila and support me throughout our stay.  Her daughter, Violet, is a year younger than Mila, and I was happy that Mila got that social time with her couzzie :) We had lots of girl talk and some beach fun.  I'm so grateful for her and the relationship we have!  

Wednesday, September 3, 2014

Whirlwinds of Therapy

Just when I think our schedule cannot get any crazier...there's something new and exciting that seems like a silver lining in our journey!  It's so hard to balance therapy, naps, mealtime, play, and travel time.  What we love and loathe about Colorado Springs is everything is so spread out.  It can take 30 minutes to get where you need to be because of distance or traffic.  With any kind of travel where you are gone for a while, you have to think your diaper bag equipped with the necessities?  Do you have water?  Are there enough snacks to hold her over until you get home?  Will you make it back in time for nap or did you miss your window?  By the way, today makes day #9 she has not napped.  Those damn molars.

While taking a break from Speech water therapy (it's their standard break), we added another office visit.  Now we will start back in the pool, keeping both office visits, and kindermusik has restarted!  In the midst of all this appointment juggling, we found another OT who has started a hippo (horse) therapy program, and Mila had an eval today to see if she qualifies for services.

Mila typically likes animals at a distance.  It doesn't matter if it's a tiny dog, a goat, or a big horse, she likes to watch them and not make contact.  She fussed when her therapist, Jamie, was petting the horse, almost as if to warn her to stop.  After about 10 minutes of petting and talking to the horse, the manager suggested putting on a helmet and going for a ride.  My stomach went into knots.  She hates anything or anyone touching her head.  There was now way she was going to be happy about sitting on that horse.  After a few whimpers of fastening the helmet, Mila was off to be hoisted on "Bubba."

Well, I'll be damned and completely surprised.  My girl rode Bubba like a champ!  She didn't fuss, whine, or cry.  She actually smiled a few times.  I swear Bubba gave her body an input it had been needing and it felt good!  She grabbed the saddle within a few seconds of riding, holding firm, like she had done it a million times.  Ironically, every time Bubba stopped, Mila would slap the saddle.  Jamie had previously mentioned a full size horse's stride mimics us humans, and the stride of a pony or miniature horse mimics walking in stilettos.  

Times when I underestimate Mila's abilities, I become ridden with mom guilt.  I fear situations that could make her uncomfortable.  I get anxious when new situations, with new people arise.  I am constantly in mama bear mode, ready to rescue her at any sound of unhappiness.  Today was a reminder to me that I need to let go.  Let go of sinking any doubt into Mila's new adventures.  Mila can do anything!  She has pretty much been a blank disc...having to learn every step, movement,  motor planning skill to do the smallest of small things of daily living.  There is nothing that she is incapable of...she just has to be taught how to do it!  Every time she's learning new skills, I'm learning things about her.  Today, she taught me to invest my full confidence in her ability to adapt, learn, and enjoy the unknown.  My Mila will be strong, confident, and a world changer :).  

Mila's latest praises.....

  • Cruising everywhere!  Wall to wall, chairs, tables, the couch, park equipment.
  • Body rotation between obstacles
  • Climbing stairs
  • Obsessive high-five's
  • Great pincer/finger control (she'll be getting a piano soon)
  • Exploring the kitchen, her room, behind the couch, daddy's nightstand (houses the iPad)
  • Verbal cues when she wants something
  • "Sharing" a lot more when asked
  • Animal/Object identification when asked once
  • Helps take her diaper off when being changed (not the best idea if a hot turd gets loose)
  • Encouraging play with daddy and I (she let's daddy rough play with her which makes him very happy)
  • Gnarliest ball thrower in Colorado
  • Initiating walking & going more than 10 feet with assistance
  • Participating in texture play
  • More squatting during play (helps build strength, control, balance-pertinent for walking)
  • Said "ma-ma" six times in a row when she was feeling stressed the other day (this makes it her third time ever, and it's literally the most unfamiliar, sweetest sound that ever existed)
I know I'm forgetting some's hard to keep up because she's learning and growing so much since she's turned the magical age of two!

We head to Cali next week for the Global Genes Project Patient Advocate Summit and I'm beyond excited!  Mila and I get to spend time with family which will be the major highlight, and hopefully I come away with new ways to help Mila and our community.

Sunday, July 27, 2014

Our Gentle Giant Turns Two

We just celebrated Mila's second birthday!  I haven't had time to blog because we've been too busy with our gal pals.  Sarah, Elaina, and Na Na (Sarah's mom), came to spend a week with us!  It was so special for them to be here while we kicked off Mila's birthday week.  We didn't do a lot of touristy stuff, but we had tons of coffee talk, laughs, and great food.  In fact, Na Na cooked for us on Mila's birthday...BBQ pork chops, stewed zucchini and squash, fresh string beans, corn on the cob, cucumbers/tomatoes in vinegar, and southern style country cornbread!  Are you hungry yet?  Michael and I were loving some southern cookin' :)  There was very few moments that Sarah and Na Na were not cleaning, straightening up, cooking, playing with the girls.  Elaina was OBSESSED with Mila!  Not kidding.  From the time she got off the plane, she called Mila's name 123,536,254,274 times a day.  She had to be kissing, petting, hugging, touching, or playing with Mila during every waking moment.  It was by far the sweetest week we have ever experienced.  The girls played so well together and knew exactly when to break away and play by themselves.  We were so sad to see them leave.  I want to live with them forever!

Even though this past year has been extremely hard, it's also been amazingly joyous and empowering.  My Mila is stronger than anyone I know, and she continues to overcome any obstacle placed before her.  Her hard work never goes unnoticed in this house :).  In preparation for planning her party, the theme was obvious!  I didn't want an extravagant party, but I did want her to have the biggest, baddest, NEMO cake possible!  I was fortunate enough to be given a name of a local woman who has a cake business.  I sent her an email of exactly what I wanted.  She called me immediately and said not only could she do it, but she was excited about doing it!  I'm pretty sure she spent a solid week just making the characters that would ornament the cake.  We invited her therapists, their kids, and a little boy from her kindermusik class to join in our celebration and cake fest.  They all showed up and made this year even more special!

We established care with a new pediatrician, Dr. Bagnall, whom I think I'm really going to be pleased with.  She was eager to refer us for a few needs I spoke of and gave me her email address to contact her at anytime.  We went in for a quick well visit.  It's been so long since Mila has had immunizations so I didn't want to rock the happy boat :)  However, she did weigh 28lbs and was 36.5" tall!  She literally grew 1.5" in a month.  Needless to say, we have nicknamed her our "gentle giant."  Although she looks like her daddy, I think she managed to snag the "tall" gene from my side of the family :).

Mila continues to work on walking with assistance, cruising, and purposeful play.  We still have a lot of work to do, but we are hopeful that Mila will continue to progress and persevere! PS...there is a Global Genes Project Summit in California in September, with focus on "Empowering Patient Advocates to Become Successful Activists," and I get to attend!! I'm so excited about meeting new people, tapping into resources, and building networks of strong families who fight the struggle everyday!  

Wednesday, July 9, 2014

Mila's Sparkle Becomes Noticed

I have been thinking a lot lately about what I can do here, in Colorado Springs, that can benefit kids like Mila. It's hard for me to know where to begin to get my ideas moving.  We don't have a huge friend circle established here in CO, so networking is grim.   I recently learned that there is only ONE park here, in a town of 600,000 people, that has a park with universally accessible equipment.  Seriously, one.  Not to mention, it's a park we don't feel safe at.  The universally accessible equipment is great for kids and adults with disabilities.  So, why is there not more in our city.  Before I go charging into the next City Council meeting, I discussed my burning desires with her kindermusik teacher, Mrs. Lisa, hoping she could shed some light on my heart.  Long story short, she supported the direction my ideas could go, and said it very simply, "we need to create a Caring Community."

It's only been a few days since we spoke, and this morning I received this email....

Were your ears burning this morning? I was thinking of you and Mila while I was watching Good Morning America. 
There was a lovely piece about a 12 year old girl planning a fundraiser to support a special Olympics type program in her town in West Memphis. Long story short... She has had a best friend since kindergarten who happens to have special needs. She is an aspiring singer, has written a song for him, and is now putting on a benefit concert in, I think, New Jersey to raise money.
The takeaway I got from this reminded me of our conversation yesterday, and I thought it might warm your heart too. Without her friend's gifts, would that girl be where she is now? Without her gifts, would her friend be where he is today? Mila will inspire so many children to be kind and compassionate. She will inspire them to go on and be singers, doctors, volunteers and teachers. They will be thoughtful of others because of her. These are all traits that can not be learned from a text book, they have to be inspired by others. In turn, Mila will have many friends, and have more of an innate love of learning because of her friends' behaviors towards her. She will have an important place in the world. 
I enjoyed this little girl's story so much, and I hope you did too. I think the whole story is on the GMA website if you are interested. 
Hugs to you and Mila today, Lisa

I could barely get through the email because my eyes were drowning in tears.  Happy tears.  Tears of Hope.  Our worst fear is that Mila will be outcasted for her differences or shunned because her quirks will be unaccepted.  Mrs. Lisa's words were exactly what we hope for people to see in Mila.  They were exactly what we pray for.  It's words like these that make me so grateful for our journey, although we may not understand His plan.  It's her words that make me so proud to be Mila's mom!

Tuesday, June 24, 2014

Let Us Hold On, Just a Little While

15q24 is a trickery little monster.  It's not just speech or sounds that become lost, but certain skills can slowly fade away. Something as simple as grabbing the spoon with food on it and feeding herself, is something she hasn't done in a long time.  No matter how many times I ask, no matter how I ask, she won't take the spoon from me.  It's a little disheartening, but I feel with time, she could gain that skill back.  I know she has the physical capability to grab the spoon and put it in her mouth, but something in her brain is not allowing her to.

Tonight, dinner consisted of Mila chowing down on a cheese quesadilla and fruit, while Michael and I sat at the table chatting about random things.  Mila hasn't eaten real fruit in for her to go for the first bite was a big deal!  Such a big deal that I prompted a "high five."  I usually do hand-over-hand guidance for most things, prior to asking her to doing them independently.  So, I guided her through "high-five" a few times before asking her to do it.  I held my hand up, asked her for a high five...she looked at my hand, looked at me...and ever so gently touched her hand with mine.  Michael and I clapped and cheered so loud!  Mila's excitement level grew with her head bopping, lots of squeals, but you could tell she had no clue why we were so ecstatic. Hahaha!  I thought for sure we had scared her out of any more "high fives," but my girl gave me a couple more as soon as I asked for them!

It's these little moments that make us so proud to be her parents.  We cheer loud and obnoxiously because something as simple as a "high five" is a big milestone for us.  We scream and clap like hyenas because we don't know when we'll get to again.  These moments are special and we'll hold on to them as long as we can.

Look who's turning two next month....

Wednesday, June 11, 2014

Serenity Sucks

We have literally packed/unpacked five times in the last month, whether to go on a trip or move.  As much as I like to travel, we are on a much needed break from doing any packing...and the next time we move, it will be to our permanent residence AND we will pay someone to move our things!  I definitely have to praise Mila...she is the BEST kid to travel or move with.  Even though I notice changes in her abilities and skills when were constantly out of routine, she never fusses!  She's a super chill girl.  For that, I am so grateful.

So, here we are, back in our groove.  All family who have visited are gone, no major trips planned, and we're resuming our schedule.  The schedule that now consists of therapy 4x a week and random doctor visits.  Mila recently qualified for Speech water therapy.  Yes, speech therapy in a 90 degree salt water pool, 30 weeks out of the year!!  She also gets an office session once a week too. Unfortunately we had to "break up" with our in home Speech therapist, but after reading the history of Katie Blehm and her reputation of success with speech water therapy, I had to give it a chance.  They incorporate so many motivating factors for Mila.  First, being water.  Second, being iPads in the pool.  I mean, seriously.  Who wouldn't love a 90 degree pool with iPads!
They have 4-6 assistants in the pool each session so there is plenty of attention on Mila.
I have no idea when Mila will start to respond to Speech Therapy, but Mila's doing really well with her standing, cruising, and even walking with her walker.  Even if she isn't consistent with these functions, she has her moments of surprise.  Such as, walking with her walker by herself for a full minute!  Wish I knew how to post the video.  It's awesome to watch.  She's awesome.  I'm so glad she continues to progress no matter how big or small.

Now that we're back at home, doing our thing, monotony sets in pretty fast for me.  As much as I love being with Mila, and as hard as I try to be patient with her milestones, it becomes exhausting.  I'm with her all the time so it's hard for me to notice changes in her.  I have to continually pray for patience...literally all day, everyday.  I have moments when I want to scream.  I have sad moments of wishing she would walk or talk.  Then I'm humbled by a mom we meet who's teenage son with a syndrome unknown has never said "mama."  Talk about a gut punch and tears.  I can't imagine.

She will get to start pre school in January which I'm really excited about.  Sometimes I feel as if I'm not enough for Mila.  I really think she would thrive better if she could spend time with others and I could be a better mom if I was involved in other things outside of the home.  It seems like I'm always pushing back "my" start date.  My start date of work, consistency, socialization.  I'm constantly pouring myself into Mila and pushing my needs to the back burner.  Thats why serenity sucks.  As we resume our normal routine, it means, I go back to being mommy and caretaker.  I would like to be less care taker and more mom.  I need to be a great mom...not just a good mom.  So until January rolls around, I'll continue to beg & pray for patience. You can join me if you want.  I need it.  Mila and Michael need it.