Thursday, January 23, 2014

Cake Smash and Epinephrine

The not-pink cake
Last month we celebrated Coraline's first birthday (I still can't believe my baby is one!)  Instead of doing a birthday party (which is way more difficult with a winter baby, since backyard BBQs are out), we decided to do a Smash-Cake photo shoot with her.  Her only other professional photos ended up being a nightmare situation (poor quality), and so I was a bit nervous to hire a photographer.  But, lucky for me, one of my co-workers (at my new job) is super awesome and so I decided to hire her.  I spent two weeks shopping for the perfect outfit, in ten different stores, (I brought home three and tried them all on) and a week trying to find a bakery to make the perfect cake. (Since we live in a resort town, many things are closed in the winter).  I fussed over every little detail and prop (what would I use to tie down the balloons? and what plate would I put the cake on, etc.)  I just wanted everything to be perfect.

(All cake-smash photos courtesy of Satin Sky Photo: )

I decided on this beautiful cotton-candy pink, lace-rosette dress I found at Baby Gap.  It was a tiny bit big on her, but really so beautiful.

I went to a local bakery to order the cake - I showed her photos of the pink dress and asked her to make the frosting match the dress (pink!) and asked for white swiss dots.  I decided to use a clear blown glass Christmas ornament we have a set of to weigh down the balloons (my wife's parents bought them in Europe for us a bunch of years ago before the kids were born, and they're really beautiful) and I decided to use one of our vintage Jadeite plates (when I met my wife, she had a small collection of vintage Jadeite, and as a gift one year, I finished her collection with all original vintage pieces that I found on ebay and in antique stores, so Jadeite has meaning to our family, and we use it for special occasion place settings.)  I ordered bubble-gum pink and white balloons to match.  I had a vision.

Well, I went to the bakery to pick up the cake... and they opened the box - and showed me a peach and ivory cake!  NOT pink and white!  It was way too pale and totally the wrong color.  To say I was upset was putting it lightly. It didn't match the dress OR the balloons!  And it looked washed out, and more like a wedding or anniversary cake than a birthday cake.  The baker wasn't even nice about it and when I pointed out that IT WASN'T PINK, she told me "that's your opinion."  I literally cried in the bakery.  Big ole' first-world-problem tears, right there at the counter.  They basically told me "take it or leave it".  And since the photographer was due in 2 hours and probably had her car loaded with equipment already, I decided to take it.  (At full price... *grumble*)

We went ahead with the photo shoot anyway.  Coraline ate most of the flowers off the top of the cake, but the frosting was kinda hard/thick so she had a hard time really getting into the cake.  But it did get sufficiently smashed.

The happy part of this story - is that we got really good photos.  I was really happy with the results, and despite the cake being beige and not pink, it still was a pretty cake.  It was NOT what I wanted, but I decided not to let it ruin our photos.  Jenn at Satin Sky Photo did an amazing job, and all of the little details besides the cake, did photograph just as I had imagined them.

Next comes the scary part.  As the photographer and assistant cleaned up, I took off Coraline's dress (which was very cake-y) and she had hives all over her body.  From neck to diaper, front and back she had white pearl-sized hives, surrounded by red skin.  Since she has sensitive skin anyway (and breaks out from the littlest thing, even a TAG in her clothes will make her red and scratchy), I wondered if it was a contact rash, and so when the photographer left, I threw her in the bath.  I quickly washed her off, but by the time I got her out of the bath she was paste-y white pale and, well, for lack of a better word, floppy.   She couldn't hold her head up, she couldn't stand, etc.  She was also relatively non-responsive.  She just laid in her crib and looked at me with a blank stare (while I was running around trying to get my purse and things together to take her to the Urgent Care).  She started vomiting, and threw up in the car the whole way to the doctor's office.  They checked her breathing and pulse-oxygen, and decided we didn't need to give epinephrine or benadryl because she had thrown up so much of the frosting.   Within an hour she turned pink again and was back to "herself", but it was a very scary hour.

Last week, we finally got in to see the allergist.  On Thanksgiving morning I gave her scrambled eggs for the first time, and she threw up all over the place Thanksgiving afternoon.  (yuck).  I called the bakery, and the frosting had raw egg white in it (and she didn't really actually consume much of the cake itself, she mostly just ate the frosting flowers off the top).  So between these two things, I assumed she has an egg allergy.  The allergist did an egg allergy skin test, and not surprisingly, it came up positive.  And so we walked away with the Grand Prize - a prescription for Epi-Pens.   And I am now Mom-Who-Reads-Labels-On-Everything-And-Carries-An-EpiPen.   Definitely unfair to discover a food allergy while eating your own birthday cake.  But at least now we know, and now we're prepared.  There's a good chance she'll outgrow the allergy the doctor says (and we'll redo the test in a year), but there's also a good chance she's susceptible to other food allergies (namely nuts) that we need to look out for now.  So that's one more thing to add to Coraline's always growing medical resume.

So, Happy Birthday, You're Allergic to Eggs!   Though we did end up with REALLY adorable photos.  We ended up with probably close to 40 photos, but these are some of my favorites.

So, here they are, Coraline's First Birthday Cake Smash Photos.  (Thank you again to Satin Sky Photo!)

All photos are property of the photographer, and purchased by me - and may not be used/copied/altered in any way anywhere on the internet or in print.  Thanks in advance for respecting her work.

Please leave a comment!  How did you celebrate your babies' first birthdays?  And have YOU done a cake smash???  Link me to it, I'd love to see it!  Anyone else have egg allergies?  I'd love to hear about that too!  Which is your favorite photo?

Tuesday, December 31, 2013

Goodbye, 2013!

I haven't posted in a long time...
But i wanted to share some of our achievements of 2013 and wish everyone a happy new year.

2013 was simultaneously the best year of my life and also one of the most difficult.  Though Coraline was born in 2012, she only lived with us for exactly two weeks in 2012, so I hardly count it.  So, 2013 was our first complete year as a family of four and I've never been happier.

Here are some highlights from our year:

JANUARY: Coraline was due January 3 but had already been with us for over 3 weeks (and i was still recovering from a difficult C-section).  On January 19, our best friends (and Coraline's godparents) got married and Lily was their flower girl.  Our whole family had an awesome time at their wedding.

FEBRUARY: was a difficult month for everyone's health, so we didn't do much.  But we wished Ruby, our first dog together as a couple, a Happy 10th Birthday.

MARCH:  Missy and I celebrated 10 years together!  We also celebrated Coraline's first Easter and Missy's birthday - where Coraline had her first hotel stay, and her first time swimming.

APRIL:  marked the one year anniversary of Coraline's conception and the positive pregnancy test that announced she was on her way.  Lily also attended her first friend's birthday party.

MAY:  May 6, my very first niece was born.  My brother and his wife welcomed Kaila Linh to our family.  We celebrated Mother's Day.  Lily started swim lessons at our local Y.  And Coraline had the first of her doctor appointments where she was diagnosed with torticollis (which would eventually start the chain of events leading to her full diagnosis.)

JUNE: As we do every June, we headed to Philadelphia for the Wizard World comic convention.  Lily had her kindergarten screening and her pre-K graduation!  Coraline began physical therapy and had her Half Birthday.  We also signed her up for Early Intervention screening.

JULY: We got our first batch of donor milk (which ultimately led to Coraline being nearly exclusively breastfed from months 6-13.)  Lily went to her first carnival and loved the rides, especially the kiddie roller coaster!  We also went to the annual LVIS fair where Lily got to go on a pony ride with her cousin Violet (which was Violet's first ever pony ride!)

AUGUST: Most importantly, Lily turned 5!  Missy and I also celebrated our wedding anniversaries (5 and 6 years, since we got married twice.)  Coraline had her MRI which led to her stroke diagnosis, which would shape the next few months (many doctors appointments and tests) and her future therapies.  Lily had her first friend/kid birthday party at Safari Adventure and all the kids had an awesome time!

SEPTEMBER: Lily started elementary school - and is doing awesome in kindergarten!  Also, we decided not to renew our lease (on the house we lived in for 3 years) and had less than 3 weeks to pack up our entire house and move!

OCTOBER:  We moved out of our house in the beginning of the month.  I began my new job (at a pre-school/daycare).  Also, the little boy who I was the nanny for in 2010-2012 came back into my life and I babysit for him on weekends.  After being ill for 10 months and seeing 4 different doctors, one finally found a solution (Lyme antibodies) and after a month of antibiotic treatment, I'm feeling more like myself again.  For Halloween, the girls dressed up as Lil Bo Peep and her Sheep!  (and they were ADORABLE!)  In October, Lily also won a Student of the Week award at school.  Coraline also qualified for Early Intervention and had her IEP meeting this month to set up her treatment plan.

NOVEMBER:  Our family went to Mohegan Sun for the first time for Thanksgiving - we all had an awesome time, but I think Lily had the best time of us all.  She talks about it all the time and can't wait to go back.

DECEMBER:  Coraline turned 1!  (And had an amazing smash cake photo shoot to celebrate.)  We celebrated Christmas with my in-laws.  The girls and I visited my parents in New Jersey for three days - at the same time my brother/wife/niece did and so we got to meet Kaila for the first time.  We're celebrating New Year's Eve at a hotel attached to a aquarium, and tomorrow we're taking the girls to see the sea horses!

Some of our major accomplishments for the year include:

* Working it out so BOTH of us can work - yet neither kid is in daycare.  And during the spring, Missy even worked two jobs!

* Finally being able to start watching our savings account go UP instead of going down (and paying off debts).

* Lily learned how to read, and can now read/spell/write at least 40-50 words.

* Despite her hemiparesis, Coraline can self-feed, crawl, stand, and cruise.

* I made it to a year of Exclusively-Pumping (breast milk), and I haven't stopped yet!  (Trying to make it through the winter).

* Missy's team (The Spunky Brewsters) consistently kicks butt at weekly Trivia Night and she brings home a cash prize nearly every week.

And a quick photo recap of the year (always my favorite part).

The wedding, January 2013
Coraline, February 2013
Swimming for Missy's birthday, March 2013

Mother's Day, May 2013

Lily at the convention, June 2013

July 2013 - My carnival photos made the front page of the newspaper

Lily's 5th Birthday Party (August)

Halloween, October 2013

Thanksgiving 2013

Portrait with their cousin, December 2013

Lily's Kindergarten class photo, 2013

December, Happy 1st Birthday, Coraline!
Photo by


Monday, September 2, 2013

Drowning in Paperwork

Learning to Crawl with one fist.
As if having a baby that is sick, injured, disabled or whatever isn't stressful enough, add to that the hassle of dealing with insurance agencies, uncooperative doctors, and state agencies that just don't have the time or staff to help.

After finding out the somewhat devastating and life-changing news that our baby had a stroke, not being able to get her into treatment has felt like someone pouring salt on the wounds.  The past few months have been series of phone calls, visits, paperwork, evaluations, and still, Coraline is not getting the treatment she needs.  I am beyond frustrated, as you can imagine.

In case you haven't been following along, or you are new to the blog, here is the backstory (in 5 parts):
Suspecting there was a problem
Visiting the Neurologist
The day of the MRI
Results of the MRI: "The News"
Viewing the MRI

We first suspected that there was something wrong/off/different about Coraline around three months old.  We noticed that she had a "crooked" smile, she was fisting her hands and she kept her arms and legs balled up into her body most of the time.  We asked the pediatrician, he checked her hips and assured us that everything was perfectly normal and fine.  Around four months, we noticed that her head was getting more misshapen and flat and asymmetrical, but again he assured us that she was fine/normal. By five months, we were so concerned that I went back to the pediatrician (between visits) and basically insisted on a referral to a specialist.  The pedia wrote on the referral "parent has been counselled that this visit is unnecessary and that there is nothing wrong with the child" - which of course made me feel like an idiot and set it up for the specialist to view me as a joke.

At five months old we visited a neurosurgeon in reference to the shape of her head.  He examined her and diagnosed her with torticollis - one side of her neck muscles being tighter/shorter than the other, which caused her head to tilt and her to favor one side (which in turn was making her skull asymmetrical).  We would later figure out that although she does have torticollis, it's only part of the big picture - hemiparesis, in which ALL of the muscles on one side of her body are tighter and weaker.  But the neurosurgeon missed it, and told us that her skull shape would correct itself in time and that she should receive physical therapy for the torticollis.  Although he missed the stroke and hemiparesis, this was the first step in receiving our diagnosis.  We said to him (in regards to correcting her head shape), that we wanted to make sure we didn't miss a window of opportunity to which he replied "you already have, she should have been in PT for the torticollis for months already."  This was one of the first moments that we realized that our pediatricians were failing us.

Coraline was in physical therapy (PT) for about five or six weeks when she was 5-6 months old.  Her insurance would approve 2 or 3 visits, then we'd have to fill out all the paperwork all over again and they'd approve 2 or 3 more.  In all, I think she had 10 or 12 visits.  They worked on her neck stretches and head mobility for the first half of the visits.   But one week, we had a different therapist and she noticed an asymmetry in her hips.  With this new info, back to the pediatrician I went (and I refused to see the one who wrote me the snarky referral ever again since there are three in the practice), and she suspected hip dysplasia and so we were sent immediately to X-ray.  The X-ray showed an asymmetry in the femur bones, and we had to go visit a Pediatric Orthopedist to review the films, and he said that the bones probably weren't causing her issues, and her hip joint looked healthy.  But from this point on the PT worked on her hips as well as her neck.

Also around this time, her hand dominance was really obvious and so was the right-hand fisting, and this was the first time the pediatrician suggested Cerebral Palsy (or a neurological cause) and so we got our referral to the Neurologist (this time without the snarky commentary.)  The pediatrician also suggested that we try to get her into the Early Intervention program - which is a state-funded program that helps babies/children with disabilities receive treatment to try to "catch them up" to their peers by the time school starts and beyond.  So just 4 days after the X-ray, on June 14 we went to visit a county building and meet with the Early Intervention coordinator in our area.  I had to fill out a lot of paperwork and we chose a private agency who would do her evaluations.

Two weeks later, we had our first of two evaluations for Early Intervention (EI).  A woman who was a physical therapist came out and took her basic medical history, asked me a lot of questions about her development and then did a physical examination of her.  The woman was very matter of fact and gave me a really bad vibe, but I didn't think much of it.  She was grading Coraline very "easy"; she would often say "close enough" when it came to her doing things.  But there were some things that she was obviously unable to do.  A week later, she called me with the results (early July) and told me that there were two tests performed.  One test she ranked in the twentieth percentile and the other test she ranked with a 25% delay (that she was at the level of a 4.5 month old at 6.5 months).  She explained to me how a baby needs a 33% delay in one area or a 25% delay in two areas to qualify for services (which I already knew).  We had our second evaluation the following week.

The second woman who came to evaluate Coraline was a special education teacher.  She was there to evaluate speech and fine motor skills.  She wasn't quite sure how to score her fine motor skills because it was like scoring two different babies, left hand and right hand.  She asked a lot of questions about her speech, like does she make vowel and consonant sounds, does she babble, does she respond when spoken to, does she know her name, does she laugh, etc.  She called me the next day and said that she found a 25% delay in speech, and so combined with the 25% delay in gross motor skills, that she would qualify for services.  Yay.

But then two days later, the first evaluator called me, and said "i'm calling to give your results."  And I said "you already did." And she claimed she didn't - that the first phone call never happened!  This time she said that Coraline was in the 57th percentile and has no delays, so she won't be qualifying for any services.  I told her this was different than what she told me two weeks prior, that there was NO way that my baby scored above average - somewhere a mistake was made.  She told me she never made the first phone call (it was definitely her) and that the results are final - we can try again in 6  months and see if she qualifies then.  I told her - I only have ONE baby and I KNOW the results I was given, you don't forget those things.  And she is probably dealing with hundreds of babies, and clearly she mixed up some paperwork.  She refused to consider that possibility and said too bad.  I asked her for copies of the evaluation and report (which I am entitled to) and now two months later, I still haven't received them.  Around this time was also when her insurance stopped approving more therapy, so she was receiving no treatment.

I got on the phone right away to our county coordinator and explained what happened, and told him that I was appealing the results.  No matter WHAT results she hands in, we'll never know which ones are real, or if she mixed Coraline up with another baby or if she changed the results or what.  I told him I wanted new evalutations done.  He said he could't reject her evaluation until he received it, and he hadn't yet.  Two or three weeks went by, and she refused to send it to him!  When she finally did (she sent the report only, not the actual evaluation results), he admitted to me that there was something fishy about them, and he granted my request for an appeal/redo right away.  To this day, I keep requesting copies, but still they refuse to send them.  He later told me that the agency is no longer affiliated with Early Intervention.

So now it's September... we started the process with EI back in June - and we are just now starting over.  On August 12 we faxed over a new release of records form and chose a new agency to do the evaluations, five days later we heard from the county rep that he received them and that I would receive a call from the agency to set up the appointments.  On Monday August 26, I was sick of waiting for the call, so i called the agency and politely left a message wondering when we would get the call to set up appointments.  The next day, a woman from the agency called me back and said she never received our info from the state - and so I was basically waiting for a phone call that would never come.  She told me she'd call the county guy and see what happened and get back to me in 48 hours to set up an appointment - and now another week has gone by and I still haven't heard from anyone.  I have a LOT of phone calls to make tomorrow.  At least this time around, we have actual diagnoses to give the evaluators and that may make the process go quicker and help "push her through"... but at this point I'm pretty furious that THREE MONTHS have gone by, and by no fault of our own, we still are not in the program and we need to start the process all over, and I STILL can't get the evaluation done!

Also, once we got the diagnoses of stroke/hemiparesis, we figured that we could get the health insurance to cover more PT visits, since her previous ones were coded for "torticollis" and this was an entire new reason.  So we tried... and they denied.  And I appealed it.  And it was weeks of phone calls and paperwork before my PT office said to me "make an appointment, and let's just get her in here.  We can worry about the insurance later."  So from June 21-August 19 she was receiving no treatment at all because of insurance bureaucracy and when they finally approved PT, they approved only 12 more visits.  After that, I'm not sure if we'll get any more.  Also ridiculous, is that at  least SIX times, I've had to fill out the SAME survey to qualify.  It has questions like "does your injury affect your ability to climb stairs" and "does your injury prevent you from engaging in social activities" and "does your injury prevent you from working" etc.  ALL of the questions on the form do not apply to an infant, yet they still keep making me fill it out!  (I fill in that she cannot climb stairs and she cannot work, etc.)  It's totally ridiculous.

And meanwhile this past week, we had to visit/call her pediatrician's office no less than 8 times to get the referrals done for her hematology and cardiology appointments.  The pediatrician "didn't want to write them" because she felt like she could handle it in her office and/or we should go to specialists of HER choosing (rather than the ones that work in the building with our neurologist who I chose).  She's being tested to make sure she doesn't have blood/heart disorders and to make sure she isn't at risk of more strokes - and her pediatrician was seriously questioning the importance of these appointments.  The same office who MISSED her stroke even though we brought her symptoms to their attention for several months and were told that we were wrong and nothing was wrong with the baby.

It was a really long road to GET to her diagnosis... until we found the one doctor who would listen to me and believe me.  And now it seems that getting her into treatment is going to be equally as difficult.  Besides PT, she's going to need occupational therapy for her hand (the one that is always fisted and she doesn't use), speech therapy (since her stroke is in the speech center of the brain), swallow therapy, and countless other medical issues that may arise.  As if all this wasn't daunting enough, just the paperwork is enough to drown in.  Instead of focusing 100% of my energy on her rehabilitation, I find myself spending more time fighting with insurance companies, evaluators, and even her own doctors.  This to me has been the worst part of the whole experience.  It's bad enough that my baby is injured, but the fact that I have to kick and scream to get her treatment has been an added layer of torture.

So instead of swimming in the ocean this summer... I have spent my entire summer drowning in paperwork.

I need a vacation.

Saturday, August 24, 2013

A Plum Never Sounded So Unappealing

Yesterday I went back to Coraline's neurologist to view the MRI and get some more info.  It was a very frustrating visit, yet for the first time it felt like making progress.

We got referrals to see a hematologist (to check for blood clotting and/or other blood disorders) and a cardiologist (to check for a heart defect).  One of those series of tests could possibly begin giving us answers as to when and why the stroke happened.  She is also going to get the hospital records from the birth and see if there is any info there to help.

She examined her and if Coraline's "good side" is 100%, she finds that the usage of her "bad" hand is at 50% and her "bad" leg is 70-90%.  The good news according to her is that her worst-off limb is an arm, not a leg - because you need two legs to walk, but you don't need two arms.  I guess.   :/
But overall, she says that she looks really good - her hemiparesis is not extreme, it's definitely mild, and for that I am really thankful.

After months of several doctors blowing me off - this doctor said something amazing to me.  She said "I'm glad I listened to you."  Because we needed to know about the stroke to check for underlying conditions, but the symptoms aren't blatantly obvious (I mean 5 different doctors MISSED, or rather dismissed them when I brought it to their attention).  We were both really glad we went through with the MRI.

I had a lot of questions about what this means for her long term - will it affect her personality, will she have more strokes, will she be physically disabled, will she walk, will it affect her speech - will she ever speak?, etc.   And unfortunately I didn't get many answers - mostly "only time will tell." - pretty frustrating.   But the doctor thinks she will definitely be able to walk, she may need a leg brace.  She warned me that she is now at risk for seizures, but the fact that we haven't seen any yet is a good sign that it might not happen.  But most importantly, she said she needs to be in therapy.  (which is a long post for another time.  I will update about her therapy tomorrow.)

Next we went to view the MRI and for the first time in this whole thing, I really felt sad.  Mostly I've been in "what are we going to do about it" mode, along with some frustration and anger.  But seeing the photographic evidence of the permanent injury on my baby's brain was very hard for me.  We flipped through the "slices" of her brain... and you could see the black spot appear on the left side, and as the slices went deeper, it got larger and larger (think of slices of a sphere).  At its largest point, it was about 1/4 or 1/3 of her left lobe - it was bigger than her eyeball (which you could see also).  The doctor estimated it was the size of a "small plum"... to me it looked like a golf ball.  It was a black black region on an otherwise gray and white brain.  It looked like a void.  I guess looking like a void, an empty space, is better than looking like what it really is - a dead portion.  Finding out the news that she had a stroke didn't feel like a big blow, because after watching all of her symptoms for months, i already knew something was wrong.  But seeing it on a screen made me feel physically ill.  The sadness overwhelmed me for a minute, but then I pushed it away and got back into "now what" mode.

So the "now what" is comprised of two parts - following up with her health and tests to find out why it happened and make sure it doesn't happen again.  And getting her the therapy she needs to recover and rehabilitate from this.  Each one feels like a full time job, let alone tackling both at the same time.  But she's a strong little kid with a big personality - she's meeting her milestones, although some of them "in her own way" (she crawls dragging her head on the ground).  But it seems like she's not letting this slow her down.

Thinking that she may be disabled or have a difficult go of life is something that I can deal with - we'll get through it.  But in the past couple of weeks, the anxiety that she may have ANOTHER stroke has been crippling at times - because until the doctor mentioned that on the phone, it never occurred to me!  The thought of losing her is so devastating, that when it comes into my mind, I have to quickly push it out, or risk an emotional breakdown, and I have too much to do to let that happen.  Since her 6-week ultrasound, when the stupid tech told me I was "surely going to miscarry", she and I have been clinging on (to each other) for dear life, almost literally.  My love for her is so... fierce... that is the only word to describe it.  I just can't imagine a world without her.  She has taught me so much - she showed me strengths I didn't know I had (or didn't know a baby could have), she smiles even though things are difficult, and she brings me so much happiness.  So when my mind goes to the "worst case scenarios" and the "what ifs", I have to quickly bring myself back to the present.

I don't have a lot of time now... so tomorrow I'll talk about treatment plans and therapy, but I've had dozens of people asking me for updates... so I just wanted to share.

Tuesday, August 20, 2013

Happy 5th Birthday, Lily!

(click to view larger)

A week ago was Lily's 5th Birthday.  In many (cliche) ways, it feels like it went by in a blink of an eye.  I still remember when she was too small to say "tomato" and used to snatch tomatoes off of people's plates to eat, while exclaiming "red! red!"  I remember her passion for Dora, and Dora was even in her first 5 words (others included mom-mom, more, and dog).  I remember her phase at age one where she hated menus, and every time we'd go out to eat, she'd rage until everyone put their menus down.  I remember when she had her first pony ride which partially inspired her love of horses which continues to this day.  I remember the day she was born, the first time I saw her, and the moment I became a mother.  I remember her first Halloween and the adorable pumpkin suit I made her wear.  I remember her first day of school (pre-school when she was 3) and how she looked like a deer in headlights when I left, but then cried when I came to pick her up because she didn't want to leave.  I remember all these things are though they were yesterday.

But now my Peanut is 5 years old and we're getting ready to start Kindergarten!  She graduated Pre-K in June and they had an adorable graduation ceremony where they sang songs and received certificates.  They showed a slideshow of photos from the previous two years, and I totally cried a little.  Lily had such an amazing time at her school, loved her teacher she had for two years so much, and loves her 4 classmates that she was with for two years.  It was her safe and happy place and it was the end of an era for her.

Pre-K graduation.  Lily is in the center.

We've had a pretty quiet summer - we went to the beach once but it didn't work out so great with a baby, so instead we discovered our local public pool which was awesome!  This summer Lily took swim classes - she LOVES to swim, it's one of her favorite activities, but she can't swim on her own yet.  Hopefully with a few more classes in the fall/winter (it's indoors) she'll be all set to swim independently next summer.  Her favorite thing to do this summer was going to the pool - both her lessons and the town pool.

Me at the girls at the pool in July, 2013.

We registered her for kindergarten and she is going to public school for the first time.  She'll meet all new friends and be in a school that is K through 8th grade.  She'll no longer be the "big kid" in the building any more.  She's a mature, intelligent, and independent kid so I know she'll do great, but it is still a little nerve wracking to send her into such a big place alone.  We haven't received her class placement and supply list yet, but school starts in two(?) weeks!  It's the beginning of a whole new era for me too - I'll be a parent of a school child, and this begins the next 13 years of a school routine.  (Somehow, pre-school felt different.)

From June, we celebrated Lily's birthday at Pre-K since she had a summer birthday.
I showed up with SURPRISE cupcakes that Missy baked.

Lily woke up on her birthday (August 13) to a mountain of gifts - this year she got Mike the Knight toys and an assortment of Littlest Pet Shop toys.  Some new books and a flashlight-stuffed-animal.  From her PopPop and Nana, she got a Build-a-Bear gift card, and so we went to the mall to use it.  The mall is 2 hours from our house, so it's a rare time we go there, so it was a kind of big deal.  Lily thought it was her first time in a mall, she didn't (or barely) remember going there as a 1, 2 and 3 year old.  She built a dog stuffed animal that she dressed in a pink T shirt, black jeans, and black Converse-style sneakers - an outfit she'd dress herself in!  We spent some time walking around, etc. and then went to have dinner at the very fancy (sarcasm!) Olive Garden, a 5-year-old favorite.  Afterwards, we stopped by her Oma's house to have birthday cake - and Lily LOVED her My Little Pony cake.

Here are some photos from Lily's 5th Birthday:

At age 5, Lily's interests haven't changed much since she was a teeny tiny.  She is still obsessed with animals, and more specifically horses.  Her other favorite animals are dogs, zebras and giraffes.  She loves swimming, playing on playgrounds, watching movies, playing with (animal) toys, travelling, visiting zoos, having books read to her, pony rides, holidays, chocolate, visiting her grandparents, walking dogs, etc.  Her favorite foods are Chinese and Italian (pasta and pizza), but she's also a big fan of the traditional PB&J sandwich.  

Lily is smart and funny.  She has a sense of humor well beyond her five years.  She has a giant imagination and tells stories and makes elaborate scenes and plots with her toys.  But my favorite thing about her is her big heart - she is sensitive, compassionate, and full of love.  She is great at sharing and considers others feelings constantly.  She is sweet and often selfless.  For all of these reasons, I am extremely proud of her, but her heart full of love is the thing that brings me the most pride.

These have been the best and fullest 5 years of my life and I can't imagine life without my Lily.  I am grateful for every day I get to spend with her.  She not only made me a mother, but she made me a better person.  I learn so much from her and seeing things through her eyes adds a whole new perspective to my life.  My best friend is 5 years old, and I couldn't be happier.

Some more of my favorite photos of Lily from the summer she turned 5:

Sisters.  Age 5 years and 8 months.

Her shirt for her SAFARI-themed birthday party we're having this weekend.

Thanks for reading!  Leave comments here with your birthday wishes for Lily!  I will read them all to her!

Friday, August 9, 2013


Coraline's First time sitting in
a shopping cart.  8/7/13
We got our MRI results today.

(In case you didn't read the back story... read these first.)
It all started here.
Here is WHY we suspected there was a problem.
Coraline got an MRI on Friday.

It's actually also our wedding anniversary, but we spent the day shopping for Lilian's birthday gifts, since this will be my wife's last day off until Lily's birthday (which is in five days!)  We were in Toys R Us shopping for presents when my phone rang and I had this really important conversation in the Teenage Mutant Ninja Turtle aisle.  Totally random.  Her neurologist is on vacation, so a covering doctor called me (and he had a very thick accent so it was a little difficult to communicate) but the message was pretty clear.

The MRI showed an (old) stroke on her left brain.

I said "wait, you SEE something?"  Although I've known all along that something was going on, I think in my heart I expected them NOT to see anything.  I was both surprised and not surprised to hear those words.  He said that they could tell that the stroke was old (it probably occurred during or right after birth), but I didn't get much more info than that.  We didn't talk about treatment plan or anything like that - I need to follow up with our doctors.  He said we'll also have to follow up with a hematologist for some testing.

Of course this news has left me with an assortment of emotions - and I think I've been cycling through them all day.  I didn't really feel much shock or surprise - it's not like I brought a perfectly "normal" baby into a doctor and got a diagnosis I wasn't expecting.  I knew all along that something was off, and so hearing it felt more like a confirmation of what I already knew more than news.  Parts of me feel really sad, of course... sad that this happened to my baby.  Part of me felt relief - to have answers.  Now that we have a diagnosis, we can finally get her in treatment (and hopefully stop fighting the insurance company to cover it).  And part of me feels pretty angry - that for months I was telling doctors that something was wrong, and that I got brushed off, dismissed, and told in not so many words, that I was ridiculous.  I feel angry that I got this test done through my own kicking and screaming my way to the neurologist and I'm angry that she has been not receiving therapy for the past 2 months (she did go for 5 weeks).  I feel vindicated because at least 1 (or two) of the doctors tried to make me feel foolish when I insisted something was off - and now there is indisputable evidence.  I feel glad that I didn't put her through the MRI for nothing.   And then I just go back to feeling sad that my beautiful baby has challenges to overcome.  I feel curious and frustrated, because I want to know how this happened.  And then I just go back to feeling angry again.

So now what... I don't know.  It's hard to get doctors on the phone.  And I guess we need to figure out a treatment plan.  I need to get her resulsts/diagnosis on paper.  I need to get back on the phone with the insurance company.

First time in a restaurant high chair.  8/5/13

In happy news, Coraline had a few milestones this week.  Since Coraline has mastered sitting on her own, she got to ride in a shopping cart for the first time this week and she got to sit in a restaurant high chair for the first time.  She loved sitting with us and felt included!

Also, she started doing a "zombie crawl" about two weeks ago... where she would sorta kick her feet and pull herself along using her arms, but she never lifted her body/head up really.  Well, yesterday for the first time, she got her knees under her and started rocking a little (usually the first sign of crawling to come).  And today she started doing a sort of "inchworm crawl" where she's getting up on her knees and pushing off (and her butt goes into the air like an inchworm), but she's not pushing up onto her arms like a regular crawl would be yet.

So here's a video of Coraline's latest attempts at mobility.  Definitely a step in the right direction!

Saturday, August 3, 2013

We Survived It

Thank you to everyone who left comments of love and support, sent texts and emails, and called us yesterday before and after Coraline's MRI.   I'm happy to say it went really well, as well as it could have.

I scheduled it with the "no eating for 6 hours" part in mind, by taking an afternoon appointment.  We woke up around 6am, and she was able to have a bottle of breast milk just before 7am (6 hours prior to the test).  Then between 7-10am she was allowed clear fluids, so at 9:45am I gave her a bottle of diluted white grape juice just to hold her over.  Between 10am-1pm she wasn't allowed anything at all, but we live about 2 hours from the hospital, so we left the house at 10am and we were in the car, so she wouldn't have been eating anyway!  They took us in a little late because an emergency came in, but overall she did well with the eating schedule.  She really didn't get super cranky until 1pm (and that last half hour was manageable.)

The MRI was at an imaging lab next to the hospital, but not a separate pediatric facility.  But, they had a pediatric team just for her!  She had a staff of four people only attending to her.  The doctor that administered her sedative was a pediatric doctor, there was a pediatric nurse, there was a guy in a suit (who i have no idea what he was there for) and we had a "pediatric care specialist" who seemed to be some kind of social worker.  The care specialist showed up at about 12:30 when we were supposed to get there to check in.  She had a big bag of toys and goodies including sticker books, I Spy books, toys, bubbles, and an iPad.  She spent the next hour and a half entertaining Lily so I could just focus on Coraline and why we were there.  And when I went in with C for the procedure, this woman stayed in the waiting room with Lily and "baby-sat" her.  It was totally amazing knowing that she was entertained and taken care of so I could put all of my attention elsewhere.

The nurse came out to me in the waiting room and explained in great detail how it would all happen.  She told me that when the medicine was injected, the babies sometimes shake, flail, struggle, cry, roll over, etc.  She said it can sometimes look like a seizure, but it's not.  She warned that it can look scary to the parents, but that it is normal.  She said they soon settle down and are in a deep sleep, and at that point they put the baby into position quickly and into the MRI machine.  She said they'd come get me as they were waking her up so she'd see me first.  The nurse explained that she'd be groggy and out of it.  She might be unable to hold her head up and have no control of her neck.  She might have no balance and tip over or be unable to lift her limbs, etc.  She said that within 4 hours, all the symptoms would get better and better but that before then I shouldn't leave her sitting unsupported or anything because she could fall.  She prepared me for most any situation and made sure I had no questions, etc.

We finally got called in, by that time Coraline was already cranky.  She missed her nap (she stayed awake in the car the whole way there) and hadn't had anything to eat or drink in 4 hours.  The moment we put her down on the table, she was already crying.  I knew if she had a bottle of milk, she'd be asleep on her own in minutes, she was that overtired.  So when they started lifting up her onesie to put the heart monitor on and holding her arms and looking for a vein, she started to get hysterical.  She had a visible vein in one elbow but they said it had a lot of scar tissue around it (maybe this was the vein they kept using in NICU?) but they decided to try it.  They tied off her arm and stuck her... but they couldn't hit the vein.  They moved the needle around for about 5-7 minutes.  She was completely hysterical, she was screaming and sweating and tomato red in the face.  It was truly awful and worse than I thought.  I thought they'd stick her, she'd cry, and soon after be sleeping, but this went on and on and on.  I was crying too and talking to her, and stroking her hair, holding her hand, etc.  But her eyes were glazed over and she was truly miserable.  They kept asking me if I needed to step out, have a chair, have a tissue, etc.  They finally gave up on her arm vein, took out the needle and untied her arm.  Then they started checking her whole body for a new vein.  At this point, I started to feel a lot of regret and the Mommy part of me wanted to grab her off the table and run from the room. But soon, the nurse found a vein on the top of her foot - you couldn't see it but she said she could feel it rolling inside.  The doctor wasn't sure and wanted one she could see - she said she didn't want to stick her again without it being a sure thing.  They kept looking, but the nurse insisted she could do it - the whole time, Coraline was still sweating and screaming, and the doctor finally agreed.  The nurse slid in the needle, and hit the vein on the first try.  I was so relieved to see the blood draw back into the tube.  They taped it down and pretty soon put on the syringe with the "milk of amnesia" and injected.  She got drowsy over about 10 seconds, stopped crying, her eyes rolled back a little, and then she closed her eyes and went to sleep peacefully.  There was none of the jerking or other scary-looking things the nurse said might happen.  She kept sniffling every 10 seconds or so, which both of my girls do whenever they cry hard - when they finally stop, they do this little pouty sniffle for a few minutes after.  They quickly strapped her onto the belt and ushered me out of the room.

We had to wait 25 minutes in the waiting room.  The social worker lady left Lily and I with a toy to play with called a Find It.  It was a tube full of beads, with teeny tiny animals hidden in it.  You had to shake and roll the tube and see if you could find all the animals.  Well, Lily and I played with it for the full 25 minutes - it was mesmerizing and soothing and it really made the time go faster.  I was joking that it would be an awesome thing to have in ALL waiting rooms,  not just for kids!

Soon enough, the doctor came walking out of the back room with Coraline in her arms.  She looked drunk, she was a little floppy and her arms were hanging down, but she had a HUGE goofy grin on her face.  She handed her to me and she felt heavier than usual, but she was as happy as could be.  I quickly buckled her into her carseat because her head was a little floppy and I didn't want her to hurt her neck.  We had to fill out some paperwork to leave, and we were out of there within 5 minutes.  I put the kids in the car and took Lily to lunch - Coraline slept through lunch and woke up at the very end.  She drank a bottle of milk and was happy and smiley and seemed to be back to her normal self.  After that, we went to visit  friends (Coraline's godparents!) who live near the hospital, and Coraline was totally fine - her balance and strength were normal, and she was her happy, smiley self.  After waking up from the sedative, it was almost as though she had forgotten what had happened before.

Besides there being those 15 minutes of horribleness when they couldn't find the vein, the whole thing went really smoothly.  I was really impressed with the staff and the facility - and I think this is the first GOOD medical experience I've had in a long time.  I felt like there were people looking out for her and for me and that they CARED how the experience was.  I left feeling very relieved that the whole thing was over with.  I'm simultaneously hoping that we get some answers AND that we see nothing (a normal scan) on the MRI.
So, again, thanks for all the kind words and thoughts from everyone!

In other news, today we had an impromptu photo shoot with Coraline, and the photos came out SO cute I have to share!   So here is the best part of the post: photos of my beautiful baby girl!  She is 7.5 months old now (and as you can see, totally comfortable sitting unsupported.)

Also in other positive news... I posted a while back about Coraline's flat head.  Ultimately, we decided not to get her a helmet/band to correct it at that time.  The neuro-surgeon said that they most always resolve on their own.  We did also take her to get her head scanned, and the helmet company revealed her asymmetry to only be on the low end of moderate.  I was terrified of not getting the helmet and feeling regret later, but I also didn't want to put her through any unnecessary discomfort, and so we together made the difficult decision not to helmet at that point and to wait it out.  Well it's been almost 3 months, and thanks to belly sleeping (i think) Coraline's head is starting to look really round in the back!  The pointiness of the top is getting shorter and the back is rounding.  During today's photo shoot, I got a few profile photos that you can see the back, and if you compare them to these photos from 3 months ago you can really see a big difference!  I'm super excited to say that i don't regret our decision at all!

Look how round!

And now... the beautiful photos of my baby girl!

My favorite!

Look at that smile!!!

I just love these photos!!!

Leave me your love in a comment - comments make my day!  Thanks for reading!
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