bday 2

Two, Two Year Olds

HAPPY HAPPY SECOND BIRTHDAY IRELYND AND KYLLIAN!

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Seems just like yesterday when your Dad and I were in tears over your arrival.  Now we cry for different reasons.  Kidding.  Kinda.

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I just cannot believe my little babies are toddlers.  I waited so long to have you.  Months and years went on at snail pace.  And although I have not slept in two years I feel as if they went by in a blink.  My little babes are now tiny humans.  Shrunken versions of your Dad and I.

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Irelynd,

You my dear are a hoot.  Your little attitude is amusing.  I am always wondering where you learn things from.  (I am not that funny.)  We hope the terrible two’s don’t hit you too badly, yet I get your little frustrations.  You understand rules but can be very strong willed.

You are somewhere around 27-29 pounds.  You are wearing size 6 shoe, 2T clothes, and size 5 diapers.  Potty training is a work in progress.  I had it in my head to get you there by your birthday, but I am learning that it will happen in your time.  Not mine.

You talk at your own terms too.  This is where your stubbornness kicks in.  Currently your fave words are “Mom-Mom, Daaaaaaaaaaaddddd, and Pop”.  Your Dad thinks you are saying Bob and that Bob is my secret boyfriend.  Your bad habits are now blamed on Bob.

Irelynd you are becoming quite fearless.  Your fave activities when Mom and Dad are not looking are climbing up and down the stairs, running on the couch, and standing on your little person table.  I don’t think my anxiety can handle much more.  It may be time to bubble wrap the floor or get you in a gymnastics class.

Favorite toys of the moment are books (you have always loved them), the step stool your Pop Pop TuTu made you, a little rooster from a birthday gift last year, and stuffed animals.  You sleep with about 10 different animals of various sizes and insist several hang out with you ALL day long.

Food time is easy.  You like to eat.  You rarely turn your nose up at items.  Yay for Mom’s cooking!  Bananas and Ketchup are your go to’s right now.  Not together although I wouldn’t put it past you.  You are my daughter.

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Dislikes include taking pictures (see above), long car rides, and Kyllian crying.  I am looking forward to turning your car seat around!  And I will continue to work on your picture taking.  Sorry love bug, there is not much I can do about your Sister.  When she cries – she cries.

Irelynd, I am blessed by you.  I love getting you out of bed every morning and snuggling on the couch before sister gets up.  I love watching your brain work thru the day.  You are absolutely beautiful and I am excited to watch you grow this next year.  Now if only I can keep your Dad from signing you up for hockey!

Kyllian,

From one whole pound to 22 pounds.  The past two years haven’t been easy yet we survived and are doing better than most thought.  You are taking a science diagnosis and crushing it with what God has planned for you.  To know you is a blessing and to be your Mom is an honor.

You really do have such a good personality.  Not so much at 1am, but it is all smiles during the day light hours.  Your demeanor is special.  One smile or little wave from you can change a person’s day. You love life and people.  Just being present is good enough for you.  That is a gift.

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Kyllian you are also stubborn like your sister.  It is good to be strong willed but not so much when bed time rolls around.  YOU NEED TO SLEEP.  Mom and Dad need to sleep.  Please.  This mommin’ thing would be a breeze if I had two perfect sleepers.  Apparently I forgot that part in my prayers when I was begging for a baby.

Who am I kidding?  Mommin’ at easy ever.  I can’t even get a picture with you two.

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All jokes aside, I am thankful for my extra time each day with you.  One day you won’t fit in my lap or you won’t want to cuddle.  I am learning to hold on tighter these days.

Kyllian, you weigh around 22 pounds.  Wear size 4-5 shoe, 4 diapers, and 18-2t clothes.  You are catching up to sister – who is finally starting to come around more now and accept you for her buddy and not pesky little sibling.  Yay!

Verbal language is not here yet but you still communicate well.  You have caught on to some sign language and we will continue to teach you.  You Tube has a few good videos we watch when up all night.  And you like to point to things now.  It has made you loose your adorable “thumbs up” but I am glad you are becoming more curious by pointing out things.

Eating is going well too.  You are not as picky as you used to be.  We are still going to work on feeding therapy but we are not running into as many problems as before.  Fave foods are any fruits, mac-n-cheese, yogurt, and soda out of Dad’s straw.  (yes, soda.  don’t judge).

In the past few weeks you have started to frog hop on your hands and knees.  There is no stopping you now.  You are becoming very speedy with hopping and walking with assistance of the couch and parallel bars Pop Pop TuTu made you.  Favorite toys are balls, anything you can bang together or on, and whatever is in the bath tub.  Thanks to Shark Week we have three sharks around the house.  Bruce is your fave.

Dislikes include sleep, sleeping alone, being put to sleep and when Mom walks out of the room.

Kyllian, my velcro baby, you continue to amaze me.  Your development has been incredible but your attitude is awe-inspiring.  When you first started to have seizures you lost your smile and we were devastated.  I am thankful it came back and am more thankful that I get to see it all day long.

Year 3 is going to be the best ever.  As soon as you get the walking thing down I am getting you into ballet.  Dad thinks you are going to be a race car driver, but that is a waste of your long lean legs.

Girls, I am so happy to celebrate you and your 2nd year.  Twins are double the work but double the fun.  Thank you for letting me love you.   Never stop loving each other.

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Up in the club

15 years ago I never imagined I would be clubbin’ as hard as I am today in my ripe old age of 34.  Let me introduce you to some of my crew.

We party ’til the sun comes up and a little after.

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We play fun games like flipping over car magnets forcing the magnet owner to go on a run before she can turn it upright.

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We normally roll with a tiny human entourage.

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We have an adorbs clothing line.

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We are friends.  New and old.  We lift each other up.  Cheer each other on.

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So the cats out of the bag.  The only clubbin’ I do these days is in a world wide running club for females only.  It is called Moms / She Run(s) This Town.

Earlier this year while running I would get lonely.  I wished I had company.  Someone to visit with.  Someone to push me along.  Then I found MRTT/SRTT.  I read the intro on the website and it sounded just like me.  I found my people – I just needed to bring them to Bakersfield.

The club has chapters all over the world.  The mission is to provide a fun club for moms (and really ANY woman – not just moms) to get together, run/walk/jog and socialize.  We hope to provide an online community built of women who will help answer running questions, encourage each other, train with each other and share their personal running experiences.

You can find Bakersfield MRTT on Facebook HERE  and on Instagram HERE.  Please follow if you are in Kern County, CA.  We would love to have you.

ANY skill level is welcome – We don’t claim to be the ‘fastest’ just the ‘funnest’.  Whether you are a walker hoping to start training for your first 5k or an experienced runner training for a marathon – we would love to have you as part of our community.

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Keep an eye out for future posts on my personal social media platforms regarding MRTT/SRTT events.

 

 

 

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Pachygyria

Several weeks ago I posted a video on Facebook of our Kyllian walking using parallel bars that my Dad made her for therapy.  The video has received over 100,000 views and has been shared all over the WORLD.  I have received messages and friend requests from Argentina to a family living in a real tree house somewhere in the jungles of Asia.  Language barriers have been difficult however one thing is clear, LOVE. That video of Kyllian has inspired so many.

I now know how important education is on people with disabilities.  I need to educate people as much as I can on what Pachygyria and Infantile Spasms are.  I need to educate on what Kyllian is ABLE to do instead of what she is not.  Kyllian has a smile on her face most of the day while all of us “typical” people do not.  What does that tell you?

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When Kyllian was first diagnosed at 8 months old I was devastated.  Angry.  I blogged about her diagnoses and told people to Google what Pachygyria was.  I did not want to think about it or write it.  All I could hear were the words of a doctor giving us the worst case and I believed it to be her diagnosis for eternity.  How dare that doctor use the word “retarded” (even if it is a medical term).

Ya know what?  I was so uneducated on “retarded” and disabilities back then.  Looking back I am glad I was given the worst case because Kyllian is beating those odds tenfold. Today I am here to educate you on Pachygyria.  I apologize for being so vague previously.

Pachygyria is defined as a developmental condition due to abnormal migration of nerve cells (neurons) in the developing brain and nervous system.  With pachygyria, there are few gyri (the ridges between the wrinkles in the brain), and they are usually broad and flat. The condition is also known as “incomplete lissencephaly.”  Pachygyria may occur alone (isolated) or as part of various underlying syndromes. Symptoms vary among affected people and may include moderate to severe developmental delay, seizures, poor muscle tone and control, feeding or swallowing difficulties, and small head size (microcephaly).  In most cases it is not inherited, but various inheritance patterns have been reported.  Treatment is symptomatic and supportive.
The first picture below is a real image from Kyllian’s MRI when she was diagnosed.  The second picture is of a typical 10 month old baby with a clear MRI scan.

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normal MRI

Understand it now?  The gyri (the ridges between the wrinkles in the brain) they are usually broad and flat.
So, what caused it?  Pachygyria may be caused by various non-genetic and genetic factors that play a role in impairing the development of the outer region of the brain (the cerebral cortex).  During normal embryonic growth, immature cells that later develop into specialized nerve cells (neurons) normally migrate to the brain’s surface, making several layers of cells. When this process is impaired, the cells don’t migrate to their locations, resulting in too few cell layers and incomplete development (pachygyria) of gyri.
I do wish to say that … Kyllian’s pachy was NOT caused by the following …
*  a mosquito bite
*  me doing drugs or drinking while pregnant
*  lack of breast milk after birth
Just getting that out there because I have been asked.  One too many times.
What now?  Now we do life.  I will always worry about the future and her development, but what Mom doesn’t?  Some children with neurological conditions don’t have a long life expectancy.  Others go to school, get married and have children.
Today Kyllian cried when I washed dishes instead of holding her.  She laughed when her Dad washed her face after dinner.  She bashfully grinned as her Sister kissed her goodnight.  And then she fought sleep.  Sounds typical to me.  Today Kyllian lived and loved.  Tomorrow I will do the same.
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Questions are welcome …

 

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Mattel Children’s Hospital UCLA

I have mentioned before how much we adore UCLA’s medical facility.  Both the hospital and the outpatient services.  We have been inpatient at the Mattel Children’s Hospital three times and Kyllian has five specialists we see on the regular for various conditions.

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Our inpatient visits have been a total of 5 nights.  Although spending the night in the hospital is no where near a 4 star hotel, UCLA does it’s best to accommodate.  In room menu for food service if you don’t make it down to the cafeteria offering everything under the sun.  Pull out couch and reclining chair in each room.  Full bathrooms in each room.  Cable TV’s with DVD’s and/or gaming systems in each room.  Nurses check on you as well as the patient asking what they can do for you.    Bring coffee, watch your child while you shower, go on a walk, catch some fresh air, and so on.  Some may think that is standard protocol, but you would be surprised.

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One of my favorite things that immediately stood out was the Chase Child Life Program.  Hospitals can be a confusing and frightening environment.  Chase Child Life Program eases that fear by familiarizing young children, adolescents and their families with the hospital experience.  For nearly four decades, this program has been a pioneer and a national model for how to appropriately address the social, emotional and developmental needs of each child and his/her family in a culturally sensitive manner.

Services Provided by Chase Child Life Program are as follows:

  • Pre-hospitalization visits for children and their families
  • Preparation for medical procedures, support during procedures and post-procedural medical play
  • Therapeutic intervention-including music therapy and play to help children cope with issues related to their illness and medical care
  • Consultation with caregivers, siblings and children of adult patients to enhance their understanding of the impact of illness on the child and family
  • Supervision of playroom, Starlight Room/Teen Lounge and outpatient play areas
  • Expert consultation for caregivers and medical team members regarding child development and related issues
  • Special events that entertain and engage children and families
  • Assistance in transitioning from hospital to home and/or school following an illness
  • Coordination and supervision of the Family Resource Room

Child Life Specialists use age-appropriate techniques to prepare children for upcoming medical procedures, presenting information honestly and with examples that a child can understand. Children may try on a mask and gown or lie on a hospital gurney to learn how it feels. Child Life Specialists may use a medical kit, books, dolls and other models while explaining a procedure, giving children a greater sense of control.

Child Life Specialists also spend time with parents and other family members before and during procedures, and afterward they organize therapeutic play and educational programs to help children to develop positive coping skills during their recovery.

Community volunteers are an important part of Chase Child Life Program, helping to coordinate special events and arts-and-crafts or other projects. And they are available to play a video game, read a story or simply sit at a child’s bedside to provide comfort and companionship.

The program also has play rooms and patios for children and parents to escape their hospital bedrooms and feel normal again.  If a child is unable to sneak away toys and other forms of entertainment are brought to the rooms.  Volunteers check on patients daily in their rooms to offer toys for entertainment and comfort.  We were offered crib toys for Kyllian, for example.

There is also a break room for parents with books, magazines, knitting tools, music, etc.  The Chase Child Life Program provides aid for parents as well.  Volunteers also bring a cart by each room daily to offer healthy snacks to parents who may have been too busy to sneak away for a bite to eat.

Chase Child Life Program does not charge for its services.  The workers are all volunteers and the play items are all donated.  Last Christmas Nic and I decided to forgo gifts and donate items to this program instead.  We plan on doing it again this holiday season.  (Sorry Family!)

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We have been picking up items since the beginning of the year as we see fit.  Our gifts are used year round for children hospitalized for only one night or long term.  I am here today to ask you to do the same.  It does not need to be expensive or fancy.  For example, coloring books, puzzles, crayons, and bubbles are sold at any dollar store!

If you are interested, please click HERE to learn more about the program and view the complete wish list.

Some times on the 2016 wish list are as follows:

  • Infant / Toddlers:  crib toys, sensory toys, boppy pillows
  • Pre-School / Elementary School Age:   legos, crayons, dolls
  • Young Adults, age 13+:  playing cards, dvd’s, video games
  • Books:  for all ages.  parents too.
  • Puzzles:  for all ages
  • Board Games
  • Arts n Crafts
  • Music

If you are in Bakersfield I would be happy to collect your donations.  If you are in LA, I encourage you to drop off your donations to UCLA directly.  If you are in any other city with a children’s hospital, please contact them to see if they have a similar program.

We have been blessed by the fantastic care at UCLA and only wish to pay it forward.  This is a good cause if you are looking to do the same.

THANK YOU ALL!!

 

 

 

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Brave Little Warrior

A little over one year ago Kyllian was diagnosed with Infantile Spasms caused by Pachygyria.  It was a scary time for us.  It has been a year of ups and downs.  Previous posts on her diagnosis can be found HERE and HERE.

Today we give praise that Kyllian is seizure free.  This does not mean that she is healed.  Kyllian will always be in danger of seizure activity.  As she ages her Infantile Spasm diagnoses will more than likely ease into Epilepsy.  Today we celebrate the fact that she has not had any seizures, that we have not had to revisit steroids, and that she is developing.  Infantile Spasms and the medical treatment to stop them are bad news.  Currently we are only on one anti-seizure medication once a day at a low dose.

Over the past year we have been hospitalized twice for possible seizure activity and visited ER’s twice for the same cause and uncontrolled reflux.  We are lucky that Kyllian’s reflux has never entered her premature scarred lungs!

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Kyllian’s reflux was confirmed last fall at UCLA over 4 tests.  An upper GI, a gastric emptying test, and two 24 hour probes.

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The tests confirmed she has bad reflux and that her stomach empties at an abnormally slow pace.  Both are being treated by 3 medications up to 8 times a day!!!!!

We met with a surgeon a few weeks ago to discuss possible surgery to aid both problems.  One is laparoscopic and another has to be done by opening her up.  Scary stuff.  It is upsetting that she has had such a rough go of things however if the surgery will stop the reflux then we need to do it.  It is horrible seeing her throw up exorcism style or staying up all night for days on end because she is so uncomfortable.

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Besides her pediatric gastroenterologist and neurologist, Kyllian is also in the care of a pediatric pulmonologist, ophthalmologist, and ophthalmic plastic surgeon.  Yes, you read that last one correct.  Kyllian visits a plastics doctor twice a year.  Her ophthalmologist is concerned her ptosis will interfere with her vision and she will need an eye lift if her eyelid muscles don’t get stronger.

We have been in the care of a pulmonologist since she was released from the NICU with pneumonia.  Currently Kyllian is off a nebulizer and on Singular granules because she won’t use an inhaler.  We keep the nebulizer and inhaler around for emergencies only.

All of the specialists mentioned above are at UCLA Medical Center.  We have had nothing but the best experiences there.  I sing their praises all the time.  The Mattel Children’s Hospital was recognized for excellence in 9 specialties in the 2015-2016 best children’s hospital rankings.

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On top of visiting UCLA monthly Kyllian is doing physical, occupational, feeding and speech therapies locally.  Twice a week a therapist comes to our house and twice a week we go to a kids therapy center.  It is a lot of work but it is worth it.  I learn tricks to use on Kyllian and Kyllian gets to work with someone besides family.

Kyllian wants everyone to know that she is A-OK.  We have one very special girl on our hands.  The future is unknown but today is a good day and we are thankful.  Thank you again to everyone who has kept her in your prayers over the past year.  Family, Friends, Neighbors, and Strangers.

The outpouring of love means a lot. Please keep her lifted up.

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Extra Fries Instead of Exercise

I can type until my fingers are numb about my struggle to find motivation, my struggle with self esteem, and my struggle with making excuses over and over and over.  I will spare you the details and just fill you in on where I am today.

The picture below represents my weight pre-baby to this past Easter Sunday.

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I didn’t even recognize myself.  Talk about a come to Jesus moment.  I knew that day it was time to trade the extra fries for exercise.  I am proud to say that I have lost a little over 10 pounds between Easter and present day.  It is because I am working for it and working with what I got.

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I can’t afford fancy diet potions, personal trainers, or gym memberships.  And that is okay.  I am fortunate to live near a bike trail, own a jogging stroller, own a bike, have a decent weight set, and a super family to support me.

If the girls are not going to nap at the same time or go to bed early – then I take them outside.  We live a mile away from this theater with stairs to run and steep hills to climb.

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If my parents come over to visit I will sneak in to another room or out in the back yard to get a workout in.  It’s not like they came to see me anyway!  A local tire shop gave us two tires for free.  I created a killer workout around it.  Tires are functional for a full body workout.  Be creative!

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If Nic is off work I use every free second of his to my advantage.  I will go for longer runs than what I do with the jogging stroller or workout at home.  Last week I ran my first 10k in 3 years.  Woot.

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The options are honestly endless outside of a gym so don’t think you need to be in one to get in shape!  My advice is to always be prepared.  I have full workout outfits ready to go at any given second.  I keep my Garmin charged.  I keep the jogging stroller near the front door of the house.  And most importantly I have a journal book of workouts so I don’t have to fart around wondering what to do.  I am getting pretty good at this Mama time management stuff!  **  I will get into more detail about the workout journal and share workouts in future posts. 

Every day I remind myself that it is most definitely a marathon and not a sprint!  It took 2.5 years to put the weight on and I can’t expect it to fall off in a week.  Cliche, but it is true.  I will run faster and I will jump higher.  In time.

After losing 10 pounds I tried on a pair of jeans I figured would fit.  They didn’t.  I felt discouraged.  Within 30 minutes I came across this sign from a Lorna Jane store …

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What a sweet reminder!  I hope this can help someone else too.  Just keep swimming.  Be proud.

 

Twin Update: 21 Months Old

Irelynd and Kyllian,

BAD MOM ALERT.  I bought baby books for each of you (not cheap) and have not taken them out of the boxes they came in.  This is so not your Mom.  The old me would have been all over those books daily.  The new me is a Momzie.  At least I have saved a lot to put in them one day.  No umbilical cords, but other things that are much more pleasant to look at.

Because I found it impossible to keep up on the books I would write letters to you monthly on my blog about your development what was going on in our lives.  Another fail.  That stopped a long time ago.  So here we are.  A few months shy of 2 years old.  Where has time gone!?

To get you up to speed:  Things have gotten easier.  Things have gotten harder.  We still are not sleeping.  We are in awe of our little lady bugs constantly.  I’m excited for the future.  I’m worried about the future.  Welcome to parenthood.

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IRELYND,

Your personality is a perfect blend of your father and myself.  Terrifying.  And I believe the terrible two’s have started.  More terrifying.  You are one smart cookie.  You know everything said and asked of.  I don’t even know how you know so much being that we don’t get out much to mingle with others.  I guess it is true what people say about kids watching their parents every move and learning quickly.

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Irelynd, you are quite easy when not having a terrible two moment.  You love to eat and love to sleep.  We have not found a food yet that you don’t like.  You get that from me.  When it comes to nap time or bed time you run over to the baby gate and wait for me to open it so you can climb up the stairs to bed.  You have never put up a fight for sleep at home.  You love your bed and all your stuffed animals that you sleep with.  Your bedtime routine consists of teeth brushing, giving kisses (even to Max, our dog), and bringing your hands together for prayer before you go down.  I don’t even have to tell you it’s time to pray.  I love that.  I can’t wait to get you in Sunday School some day.

You are a great sister.  You hand me Kyllian’s burp rags, fix her glasses when they fall, and on occasion I can get you to share toys.  You don’t really understand why you can’t do therapy with sister.  It looks like play time so I don’t blame you.  And you don’t understand why sister can have a bottle and you can not.  I get that and I am sorry some things are confusing right now.  I am just thankful you don’t notice that sister isn’t going to bed when you do! 😉

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Following is a list of your current favorites:

  • Books.  We don’t have bedtime stories because you are read to during the day.
  • Charlotte (doll/blanket).  She goes everywhere with you.
  • Being outside.  You love to go to parks.
  • Running because you are so excited to be independent
  • Climbing.  Not looking forward to the day you learn to climb over the baby gate.
  • LION GUARD.  Oh my lanta, you love this cartoon.

I am looking forward to this summer and the next few months before you turn two.  We just got your potty chair in the mail today and plan on training soon.  May the force be with me!  I really think you are ready though.  I am very lucky.

I love you to pieces and bits.  Just please stop growing up so fast!!

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KYLLIAN,

You are doing so well.  I feel like you have the support of the world behind you.  So many people keep you in their prayers daily.  We are blessed.  And everyone you come across is blessed too by your sweet sweet smile.

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I am in awe of how far you have come.  From a pound and a half to 21 and a half as of today.  You are catching up to sister.  Irelynd will be in trouble once we can get you on your feet.  I can’t wait for that day.  You are well on your way with physical therapy, occupational therapy, feeding therapy, and speech therapy 4 times a week.  We are also on a waiting list for one additional OT session weekly.  I do hope it opens up soon however I’m not looking forward to one more appointment to fit into the schedule.

Kyllian, you can get anywhere you need to be by rolling.  FAST.  You can army crawl but it isn’t your preferred method of transportation yet.  However when you do crawl you get proud of yourself and giggle the whole way.  When you do something like that you clap for yourself and look around the room to make sure everyone else is clapping too.  It’s very cute.  You can stand with assistance of an object or person.  And your mobility with hands and arms has improved.  You are strong but need help connecting the dots to get everything to work together.  I am so proud of you and excited to see how the next few months will turn out.

Just like your sister, you are also a smart cookie.  You watch everything closely.  You study others when they talk and you love watching Irelynd.  If Irelynd laughs you will laugh.  If Irelynd gets in trouble, you cry like you are in trouble too.  You are pretty emotional.  You get that from your Mama.  I get it from Nana.  Let’s blame Nana. 😉

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Following is a list of your current favorites:

  • Balls.  You love rolling balls back and forth.
  • Your bottle.  This is exciting because we have had feeding issues in the past.
  • Anything that makes noise.  You love to bang objects together.
  • Being outside.  I like taking you on runs.  You like to feel the wind in your hair.
  • Bath time.  The pool is going to be fun this summer.
  • Moon Moon Moon Song.  Sometimes I sing this 1,682 times a night to get you to sleep.

Speaking of sleep, how about you start doing that now?!  Please.  It is actually Mom and Dad’s weakness because we like it more than you apparently.  Doctor’s don’t have an answer for us because you are growing and currently seizure free.  Some times you are sleepy but will fight it for HOURS.  Other times you are wide awake and happy for HOURS.  And then there are the times when we get you to sleep but you wake up because of reflux.  I will save those details for later along with an update on your health.

Besides your nightly witching hour(s) you are such a happy girl.  Over the past two weeks giving a thumbs up has become your signature move.  You are a hoot.  Thank you for teaching me so much.  I love you to infinity and beyond.

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Girls,

Our goals for the next few months are to learn more sign language.  Both of you are actually doing well.  More, Please, Daddy, and Sleep are our current regulars.  I throw a new one in every now and then but have to be careful not to confuse you two.  For example, blowing kisses and the sign for “thank you” are too similar.

Again, I am so sorry I have skipped a year on your updates.  I do have a million pictures of your every move so at least our memories are documented that way.

Thank you both for blessing me.  Cheers to us!

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