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

Results

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!

Thursday, August 1, 2013

Since We Don't Have X-Ray Vision

7.5 months old
 Tomorrow Coraline is going to have a brain MRI under sedation, and this mommy is a nervous wreck tonight.  Not only am I worried about the procedure itself, but I worry about her comfort and if she'll be scared (not during, she'll be sedated of course, but before) and the six hours prior that she can't eat!!!

This summer has been a whirlwind of doctor's appointments, concern, and just wanting answers.

We've been noticing little things about her that are "off" since she was 2 months old.  And the more developed she's getting, the more obvious some of them are becoming, and all these "little things" kind of add up to "something" and now we're on a hunt to figure out what the something is.

When she was 2 months old and she started smiling, we noticed she had a "crooked smile"; the left side of her mouth smiled first/more.  It's totally super cute and we thought nothing of it then.  But it was the first tiny piece of the puzzle that would develop as the months went on.  Her facial expressions are often asymmetrical (and her left side is more expressive).  It's subtle, and it's not 100% of the time, but if you look at lots of photos of her, you can notice it about 20% of the time.

Next came the flat head/plagiocephaly (read about it here) that lead to a diagnosis of torticollis.  It took months and months of me pointing out her head-shape to the pediatrician, and finally an insistence that we see a specialist for us to get to that point.  To help correct the torticollis (and hopefully the head asymmetry) she was referred to physical therapy (and she went for a couple of months before insurance cut us off).  They worked on stretching and strengthening her neck - and soon after when she learned how to roll over, she started sleeping on her belly.  She's now a 100% of the time belly sleeper, and her head is really starting to round out because of that.

During one of her PT sessions, we had a substitute therapist, and she conversationally asked "does she love to play with her feet?"  And I told her that she can't REACH her feet.  She said "that's weird" and started playing with her hips/legs.  The therapist noticed an asymmetry in her hips and legs and a poor external rotation of her right hip.  At this point, Coraline also wasn't sitting (even supported) - if you put her in a sitting position, she'd slide her butt forward so she was reclining, and we began to wonder if her hip tightness had something to do with that.  So back to the pediatrician we went - and she also felt the hip asymmetry and so we were sent off for X-rays to check for hip dysplasia.  Her hip joint looked normal, but there was asymmetry discovered in her femur bones - so we were sent to an pediatric orthopedist - and he said it was insignificant and not likely to be causing any problems (but we do have to go back in 6 months for a recheck to make sure the asymmetry hasn't gotten any more severe).  So her problems were declared not to be skeletal, but rather muscular.

The next thing that we noticed is that Coraline is left handed.  She uses her left hand for everything, and her right often remains clenched in a fist.  The issue though, is that babies aren't supposed to have a dominant hand until close to two years old.  But the more she started playing with toys and eating, the more obvious it became.  She just isn't using her right hand.  Sometimes she'll use it to assist her left, but when she does, it's clumsy and often fisted.  I pointed this out to her therapist, and he confirmed it (he'd try handing her objects from all different sides, angles, etc to see how she'd grab, he tried getting her to pass objects back and forth, etc.)  And it's not that she can't use her right hand, it's that she uses them differently.  It's almost as though she doesn't control her right fingers individually, and so she uses the entire hand as one unit.  Whereas she has good fine motor skills with her left, and can pick up objects, etc.  Her right hand is often in a fist, her right toes are often curled, and she usually has her right arm pulled in against her body.

And lastly, we noticed that she doesn't bear weight (at least not fully) on her right leg.  If you stand her up, she can stand just holding your hands, but her left leg will be straight and bearing her full body weight.  Her right leg usually is bent, standing on her toes, and sometimes "bounces" as though it's giving out on her.

All of these things are little and wouldn't be noticeable by anyone spending a little time with her - but when you spend 24 hours a day with her (and have spent a lot of time with other babies), it becomes pretty obvious that something is a little off.  And what they all have in common, is that they are asymmetries, and they're all on her same side.  Her neck/flat head, crooked smiles, hand dominance, hip problem, tippy-toe leg all show a weakness on her right side and a dominance on her left side.  So back we went to the pediatrician with all of this info.

All along I'd been told by the pediatricians that everything was fine/normal, etc. (It was the neuro-surgeon that caught the torticollis that began all of this, and we were only there at my insistence.)  So, while this is a post for another time, I was beginning to get very frustrated with the medical industry (and I have a TON to say about it).  I was seeing all these things (and so were her PTs) and was being dismissed again and again.  So when I went to this appointment, I expected to be brushed off yet again.  Instead, the pediatrician examined her and started using scary terms like "stroke in utero/at birth" and "cerebral palsy"  and "brain damage" and we were being referred to a pediatric neurologist.

I had to wait an agonizing 6 weeks to get in to see a pediatric neurologist, and in the meantime had all sorts of worst case scenarios going through my head.  I spent weeks wondering, am I going to have a handicapped child?  We finally went, and for the first time in all of this, I met with a doctor I really liked.  She spoke to me like a human (and not an annoyance) and in words and scenarios I could understand.  She put my mind at ease about a lot of things, but didn't dismiss or belittle any of my concerns.  She saw what I saw (the leg doesn't bear weight, she curls/fists her right toes/arm/hand, she favors one hand, and the plagiocephaly) and gave an official diagnosis of Right Side Paresis and hypotonia.  The how and why and what now (treatment) are still to be seen.  She told me "I don't have X-ray vision, and if I did, I'd get paid a lot more" and so we need some imaging - and that's why we're going for the MRI tomorrow.  But she said there's a good chance we may not see anything on the MRI - because sometimes brain injuries are just too small to see with our eyes, or sometimes they aren't there - and these muscle issues just occur with no explanation we can find.  In good news, the neurologist called her "socially appropriate" and the pediatrician sees no cognitive delays (which I wasn't really concerned about) so whatever is going on seems to only be affecting her muscle tone, not the cognitive parts of her brain.

I think no matter what we see (or don't see) on the MRI, more physical therapy is going to be the solution.  Unfortunately, insurance has been denying her up until now and I've been battling them all summer, but with a neurologist and an official diagnosis, I imagine we'll have better luck.  Our pediatrician told us that starting PT sooner or later won't affect her long term outcomes, but that she's on board to help us get her treatment sooner than later.  Along the lines, leg braces have been mentioned to assist her walking (and keep her ankle tendons from remaining too short in her weak side) but that is obviously many months away and only a possibility.  She may also need occupational therapy to help with the usage of her weak hand and fine motor skills, but again, at her age, it's a little too early to really worry about this.  And the pediatrician says that this may all clear up with time and she may have no lasting effects as she grows and gets older.  But for now, I can't help but worry.

So, tomorrow is her MRI - which may tell us nothing, or may have some answers for us.  Poor thing can't eat for SIX hours before hand, and so I suspect a very cranky baby by the time we arrive.  I don't know if her sedation will be IV or something inhaled or what, but I worry about the pain/discomfort of needles she may have to go through.  And of course, any sedation is scary, but her doctor assured me it's completely safe and she'll be monitored by doctor at all times.  Still, I will worry.  Part of parenthood, I know.

We haven't really told anyone in our lives what's going on, because it's been bouncing back and forth from place to place and not getting any answers, just a lot of speculation.  But being vague about her physical limitations (which are beginning to become more obvious, as she is becoming delayed in some milestones), was starting to make me feel isolated and just impacting our stress levels even more.  So I guess here is where I reach out to friends and family for positive thoughts, support, and love sent her way.  Coraline is truly one of the sweetest, easy-going, happiest babies I've ever met, and to see her struggle is pretty heartbreaking.  It's becoming a full time job for me to make sure she gets the care she needs and to make sure she reaches her full potential.  And because of that, I haven't had much time to focus on anyone or anything outside of our family.  Between this and getting Lily ready for kindergarten, it's been a stressful summer.  I'm definitely in need of some distraction, vacation, and good news.



Sunny July day at the pool.  With me,  7 months old.

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