Monday, July 7, 2014

It's Difficult to Believe She Is Almost Two

We had our meeting with Early Intervention this morning.  I know Allyn is behind in a lot of areas.  The biggest concerns for our family are her gross motor skills and speech.  We had all of our in-home assessments with EI and we met as a group to set forth some plans for treatment.  We have kind of decided that she will do two sessions of physical therapy, two (or one) session of speech therapy and one session of occupational therapy weekly.   And twice a month we will meet with a developmental therapist. 

The results didn't really take me by surprise.  Nor did the plan we outlined for her therapy.  The care coordinator and therapists all said we could scale back if it seemed to be overwhelming.  I would seriously move mountains for this little girl.  So we are going to do as much therapy as we can for the next six months or year.  And we all too often hear about how His timing is perfect.  We will have a lot of therapy beginning in the next weeks or months.  And in terms of managing two kids, it could be a lot.  Fortunately it is going to work out that Nolan will be in kindergarten when she is doing most of her therapies so I am hopeful that this will impact him as little as possible. 

I don't ever want him to feel like I am constantly pouring into his little sister and he is just some blip in our lives.  And that gets away from me sometimes because he can be so self-sufficient.  It's really hard to believe how demanding, needy little he used to be.  And I know I gave him 100% of myself before his sister arrived and I still manage to carve out time for him when Ben is home or Allyn is napping so I just need to get over the self-imposed mom guilt. 


 But the take away from our meetings were that while Allyn seems to be cognitively on track, her lack of gross motor skills keep her from doing age appropriate activities and tasks so she is behind on some of her more developmental milestones.  And the lack of weight bearing has kept her from strengthening a lot of her muscles necessary for fine motor skills.  And she doesn't really have any core strength and that plays into some of her mouth muscles (file this into things I would have never known) and that is impacting her speech and eating. 

At some point we will also have a follow up with nutrition.  She is just so little.  And we offer her foods.  Lot of options throughout the day.  But we just don't seem to be chipping away at her small size with any measurable amount.  So we will explore that avenue too.

 
But everyone noted how pleasant she is and how she seems engaged with adults.  (Kids freak her out a little because they can be a little a lot more unpredictable.)  I hope that at some point I can update all of this and say just how far she has come in a short period of time.  But if it takes a long time, that's okay too.  And if we never get there, we'll still love on this sweet little girl the same as yesterday. 

Thursday, July 3, 2014

Growth


This has been one of those weeks where life lessons have just been tossed in my face left and right.  And honestly, I've been so busy I just don't even want to take the time to stop and reflect on them.  Things have been insanely rough lately.  And yet we still have so much to be thankful for.  And it's easy to lose sight of that.
 
I have felt like the ugliest pig lately.  No showers, gym clothes, breakouts and bad hair galore-ugly.  It's a shame I put so much of my self worth on how I look and it translates into how I feel.  I have a husband who always finds me beautiful and when my babies see their momma it's nothing but love.  And I just think if I had less gray hair or the bags under my eyes were gone or my hair had more volume or my skin would stay clear for longer than a minute, things would be better.  And then I feel so silly for thinking any of that matters.  I mean: health, loving family, all of our needs (and most of our wants) are met.  It's really selfish.
 


This was taken on a day when I showered, dried my hair, put on mascara and used light to drown out a lot of the imperfections.
 And my insecurities spill into my relationships.  I probably don't give my husband enough attention because I just feel so gross.  And I shy away from adoring looks from my kids because of pimple on my chin.  I really don't have a lot of friends and it's hard for me to make new friends.  I shy away because I worry people will judge me or the way I look or what I drive or where I live.  And honestly, they probably are.  But does that mean they wouldn't like me?  Probably not.  And so my kids aren't around a lot of other kids.
 
This little fella is like a sponge.  He soaks up everything.  And unfortunately, I haven't been the very best role model for him lately.  Lucky for me, he still loves me "more than anything in the whole world."
 This week we had a meeting with neurology to make sure there was nothing else going on with Allyn that was causing the scoliosis and delays.  The physician said that sure she was delayed physically, but cognitively there is nothing wrong with her.  She clearly understands everything we are saying and just has a hard time communicating verbally.  But to keep down the road we are on with getting her in as much therapy as we can. 
And this little dolly.  She almost always brings a big smile to my face.  (Hey she's in that phase where she gets frustrated a lot, and so do I.  So there are some not so smiley moments.)
But she said something else so very profound.  Stop.  Stop stressing; stop doing too much for her.  Get her out around other kids her age.  Let her play and explore.  For the last year I have really been keeping her close.  We spend a lot (almost all) of our time together.  I want to protect her.  And in a lot of ways I want to shield her from all of the emotions and judgement that I feel most of the time.  She needs to learn to do things on her own.  There will be frustration and there will be tears.  But through it all she will grow.  And maybe, so will I. 

So I'm going to do my very best to just live with these people I love so much.  If the last year has shown me anything, it's that life will throw you curve balls and you will adjust.  You really don't have a choice.  But I have failed immensely on the loving life front.  I've just wanted to make it to the next day, the next month, the next phase, the next cast....  And hopefully, that will translate into fun and friends and really loving this next chapter in our story.

Wednesday, June 25, 2014

Finding a New Normal

Ahhhh, moving.  If you want to see someone near her maximum stress level, have her relocate with kids.  We are slowly figuring things out.  Some key things to keep in mind:  everything is more expensive and it takes longer to get anywhere you want to go.  So entertaining the kids is forcing me to pick and choose activities so we can keep the budget healthy. 
 
We have also been going through the process of getting Allyn enrolled in Early Intervention.  In our last city, we just did private therapy.  When we started it was just physical therapy.  But as she has gotten older, we have realized she is going to need more and more services.  Services that would probably cost thousands of dollars every month.  So we decided to use our state's early intervention services for the next year and then when she is three see if we can qualify for services through the school district.
 
We recently had our OT assessment  That is the one area that I thought we may actually not qualify for.  She was 40% behind.  I guess sometimes I just forget how old she is and what is typical for a child her age to be doing.  I still think of her as a baby.  But she is almost two.  The therapist gave us some things to work on to help her grip and strength.  And once the assessments are done, we will add that to the list of therapies we will be in weekly.  And while it seems like a lot, I am just so thrilled there are resources out there to make this as easy as possible for the whole family.  And therapists who clearly love their jobs.
 
She has started crawling.  And just last night she pulled up to stand with a little help.  She has only done that one other time before.  The elation on her face when she did it will forever be etched in my memory.  It is by far one of the happiest memories I have of her to date.  And after she gave me a big hug she had the best giggle.  And those moments make me forget about all of the hurdles. 

 And then there is Nolan.  He is also enjoying himself.  We try to get out of this place to play and explore.  He really wants to go swimming.  And eat goldfish crackers...ALL. DAY. LONG.  I know he will settle into a good routine once we are able to get into the house.
 So.  The House.  We will be pushing our move in date.  The flooring install took longer than expected.  And even with the delays we factored into the move in date, it just wasn't enough time for the poly to cure.  And we didn't want movers destroying new flooring so we pushed it a couple of weeks.  Also, the fumes.  It is definitely going to need a couple of weeks so it doesn't make me or the kids sick. 

Here is a little sneak peek.  This is the dining room before.  Now I understand maybe you love hunter green.  And that is a paint treatment. Not wallpaper.  But I do not.  I like simple neutrals.  And sparkly accessories.  So we are modifying some things.  I will say the owners took the best care of their home.  They just really loved yellow.  A lot. 


Tuesday, June 17, 2014

Cast Number 7


 Hi Everyone.  We have been crazy busy.  Not just normal busy...but packing up the house and moving a couple of states away busy.  Relocation with kiddos is an entirely different beast from what I am used to.  But things are good.  We were able to find a beautiful home in a great neighborhood and amazing city.  But for now we are in corporate housing so things area little stressful.  Y'all, we don't even have a vacuum cleaner.  It's rough.  (First world problems rough).

But this little girl is handling it pretty well.  And her brother is pretty pumped about staying in a "hotel."  Both kids have been sleeping past 7 a.m.  And so has momma.

 We do a lot of sitting around.  And watching television (and sharing snacks).  And playing with the handful of toys that we brought with us.  We have also joined a children's museum but with remodeling on the home and checking on contractors, we have only been able to go once.
 But now for the "meat and potatoes" portion of the post.  Allyn got Cast #6 off this past week.  Her back looked about the same.  But it's clear that she is doing some growing. 
 She is always such a beyond pleasant child with her cast off.  She loves being able to sit and bend and kneel without the extra weight and restriction. 
 We also took a little mini-vacation to Lake Geneva, Wisconsin.  We had planned to go to the beach but casting schedules were modified and our vacation week changed and then no one could go.  I'm still a little bummed about it (again, first world problems), but it was nice to be able to schedule a couple of days away less than a couple of hours from the house.  Nolan was again excited about the hotel and the indoor waterpark.  Allyn took a while to warm up to the waterpark.  I had to hold her the entire time the first day.  By the second day I was able to sit with her in the water after being there for a few HOURS.  She didn't much care for all of the splashing in her face.  And for a child that is kept away from most water, can you blame her?




Yeah, so we are back in the Chicagoland area.  It makes treatment for this awful battle with scoliosis a little easier.  We were able to wake up and drive less than an hour to the hospital.  From our temporary house.  And it will be the same from our house.  I hope this makes her acclimation to each cast a little easier. 

 Her spine is still around 40 degrees.  BUT the rotation is getting better.  When looking the vertebrae, you can see a white dot on each side.  On her left side (the right side of the picture), we can see two more white dots on this film than we could on the last.  Hopefully this is giving her a better shot at symmetry and improving her lung volumes.  And maybe once we get her a little more untwisted, we can work on getting the curvy out. 
 And recovery this time around was even better.  I think having her bubba around to terrorize certainly helped her feel much better. 

Friday, March 7, 2014

Embrace the Awkward

There is not enough Internet to fully explain how awkward I was as a child (and still am today). 
 Rest assured, it started early.  Sure I was adorable.  But clearly, my mother had NO IDEA of what to do with that hair. 
 I was in fifth grade.  My ears were not pierced, so I wore some homemade clip on earrings.  And a bow.  And curled my bangs.  I think this is when I began to slip into serious awkward territory.
 And in sixth grade I had my mom take me to get a spiral perm.  What?  I think I wanted to look like Julia Roberts.  Instead, I look more like a Labradoodle.
 Another one in sixth grade.  I'm on the middle row on the left.  I was pretty much always a smaller child.  And a really late bloomer.  I think that most certainly added to the awkward. 
 So in seventh grade the perm was growing out but I brought back the bow.  And an oversize tunic shirt with shoulder pads.  I was also wearing floral leggings and Sam and Libby bow flats.  Maybe I would have looked less weird if any of my clothes fit. 
 Eighth grade was a less awkward year for me.  You may wonder what in the world is going on in my mouth.  I was born without a whole mess of adult teeth.  Two top lateral incisors (which wasn't awkward at all, let me tell you), two bicuspids and all of my wisdom teeth.  A lot of dental work had to happen on this grill to get it to where it is today.  So from seventh through tenth grade I had all of thes springs and braces and headgear and mouth drama. 
 Ninth grade may have very well been the PEAK of my awkwardness.  I had braces and acne and puberty was still eluding me.  So I jazzed up my school pic with one of my MOM'S necklaces.  Fancy. 
 Also, about this time I broke my leg.  Let's amp up that awkwardness in the front yard at my dad's house.  Why not?
 
I was probably sixteen here.  Maybe seventeen.  I look twelve.  And judging from the way most girls dress today, I look eight. 
 
Let's just be thrilled that with the help of dermatology, cosmetic dentistry and over twenty years of taming this mop on my head I look marginally less awkward today. 

Monday, February 24, 2014

Cast #5

Last Sunday we flew to Chicago to get Allyn's next cast.  Cast Number Five.  Seriously y'all.  We are on number five.  Before this whole casting thing started I just knew we would be doing three or four casts and she would be straight.  Turns out that is not our journey.  We had a few days of intense physical therapy to work on crawling and standing and trunk ROTATION, ROTATION, ROTATION.  The lack of the ability to rotate her trunk along with the added weight of the cast has made hitting gross motor milestones pretty much impossible.  But without the added weight she was doing a great job of standing and even some assisted walking.  It is after all about 15% more weight added to her body. 
 So Sunday we headed up to the western suburbs to look at houses.  Wait.  What?  I probably forgot to mention to you all that we are moving back to the Chicago area.  Ben has a new position and it makes getting her medical care so much easier.  We looked at twenty houses in December and found nothing.  We looked at six more and nothing.  But it makes it hard when you have a pretty good idea where you want to be.  If worse comes to worse, we can always rent something.  I just plan on us being in this house for longer than we have been anywhere so I don't want to end up with a floor plan I don't love or a location I'm not wild about.  After we looked at homes we had to go and watch some cartoons at the hotel. 
 We had our last bath for the next SEVERAL weeks.
 And got all dried off.  She really enjoys bath time now.  But the first bath out of cast is always a little foreign to her. 
 We headed into Shriner's early on Monday morning.  They were forecasted for snow, fortunately nothing was coming down before six that morning.  Yeah, it's six in the morning.  She is all smiles. And she was until we went back to the pre-op holding area.
 We got checked in and had x-rays.  The quality is not the best (I blame Ben's photography skills), but we are still somewhere in the 50-degree range.  We have kind of decided that we are not seeing much any improvement because she really isn't growing.  So if you want to say a little prayer (or a big one) that she grows in this cast and starts to straighten out that would be amazing. 
 While she was in surgery I got a call from Nolan's school that he threw up in class and that I needed to pick him up.  So that marks the FOURTH time he has had the stomach bug this year.  I called Mimi to let her know and she headed in to pick him up.  (He had the stomach virus for FOUR days.  It was AWFUL). After the casting we headed back to our hotel and the snow was coming down.  They ended up getting about seven inches of snow.  Also that night the stomach bug got Ben.  Ugh!
 The next morning we went and got some of the margins trimmed to make the cast more comfortable and headed home.  Bye Chicago.  See you in a couple of months.

Wednesday, February 12, 2014

On the lives we've imagined

Back before Allyn was born, Ben and I talked about how we would probably need a newer and bigger car.  We purchased a Camry in 2007 for me to drive.  And while I was totally fine with driving it into the ground, it would probably be a little on the smaller side for two above average size adults and two super protective bulky carseats carrying our precious babes.  We decided we would probably wait until the summer after Allyn was born to buy a minivan.  (Although Ben really, really, really wanted a Tahoe or Suburban or some other oversize and expensive vehicle....until he realized just how expensive they were).  By that point she would be nearing the point of walking or wanting to walk and a bigger vehicle would make more sense.  Plus, I was totally cool with not forking over a fortune on a new car for as long as possible.

Well, we finally bought a minivan this past January.  Nolan loves it.  And I have always driven cars close to the ground (Mercury Topaz, Honda Civic and the Camry), so the sitting higher up is a nice change for me.  We ended up waiting beyond summer because Allyn doesn't walk.  She doesn't crawl.  She doesn't say anything.  And she may have to be rear-facing in her car seat until she is three years old based on the suggested weight for turning her around. 

You can plan and plan, but sometimes things change.  I wouldn't trade this little dolly for anything or anyone IN. THE. WORLD!  But looking back two years ago while I was pregnant and doing everything to give her the best chances of being healthy, I would have never imagined we would be here today. 
 Seriously y'all.  I ate right; I exercised up until the day before she was born; I removed caffeine from my diet; I took my vitamins and nothing else.  And because we were trying so hard to get pregnant, I didn't consume any alcohol if I thought there was the slightest possibility that if I peed on a stick it would show up positive.  (Which was every month.)  And when she was born, she was perfect.  And we never even knew anything was wrong with her until she was about 5 months old. 
 So now I am trying to navigate the world with a child that ultimately has special needs.  Someone mentioned joining up with an Early Intervention group.  And up until that point I never thought of her as an EI kid.  She's just Allyn.  And I guess that's the thing about this new place we are, and now how I know other parents living a life with a child that does have special needs see it:  they're just kids.  Orthotics and aids and therapy makes them different to everyone on the outside looking in, but not to us.  I really don't even notice Allyn's cast anymore.  It strikes a nerve with me more when she is out.

And she is out of Cast #4.  We'll know how well this one worked when we go back to get Cast #5.  She is still so curvy, but her right rib hump is looking smaller.  I think back to last year when we went to the beach right before we started casting and how bulging it was.  It looks so much better now.
 From the front you can also still see some of the asymmetry in her left ribs. 
 And while it looks like she has grown quite a bit from the last cast, she is still super tiny.  I offer her the highest calorie things I can think of.  Plus she still nurses 8 times a day and from our volume study she is getting about 5 oz each time.  That in addition to meals and snacks, it's enough to make you worry if you really think about it.  So I don't.  I just keep feeding her. 
 She is really enjoying her time out of the cast this go-round.  She can rotate to make transitions and bearing weight on her legs is much better without the added 2+ lbs.  We are in therapy every day while she is out to see if we can pick up some new skills and keep those skills when we get our next cast on.
 And she sleeps like a dream out of cast.  Like.  A.  Dream.
 Oh, and the N-ster would like you to know that he is totally ready for some warmer weather.  We have had snow on the ground her for over a week.  And for the longest time it was overcast and cold.  Reminded me of when we lived in Chicago.  It's enough to make you depressed. 
This weekend in supposed to be beautiful.  Sun shining, snow melting, playing outside beautiful!  And we are going to take full advantage of it!

Friday, January 31, 2014

The Ice Cream Thief

I love mint chocolate chip ice cream.  It's by far my favorite.  And even better, it's not Ben's favorite and Nolan hates things that are mint flavored...AKA: spicy.  There are not many things that I buy and I single-handedly consume.  Dinners at home, dinners out, desserts, bottles of water, even cups of ice water that I fill up at the house usually are sipped on by one of the kids.  (Did I mention I have a cold right now.  Wonder how that happened?)

Well, guess who has developed a taste for the mint chocolate chip ice cream?  My dolly. 
 I have started buying her Haagen Dazs chocolate ice cream.  It seems to have more fat and calories than other brands out there.  Plus, it's kind of amazing.  After school we usually come in and Allyn and I have ice cream and Nolan has a popsicle. 
Oh, but what does this little doll prefer?  The Talenti Meditteranean Mint gelato that I was overindulging snacking on.  But who can blame her?  It's totally amazing.  So now I am once again on the hunt for something that I love to eat and is not the preference for anyone else in the family.  

Wednesday, January 22, 2014

Sick Days

Last Friday morning, the stomach bug hit our house.  Nolan woke up around 6 yelling at me from my bathroom.  So I woke Ben up to help out.  He spent all day either vomiting, on the toilet or sleeping.  But he's a strange one.  Right after he gets sick he is ready to get back to it.  It's like it never happened.  It was hard to restrict his food and liquids intake.  But when you are home with one sick kid and one well baby, you try to limit the number of episodes and subsequent cleanups. 

So this is how Nolan spent Friday.  Eating rice.  Eating applesauce.  Drinking tiny sips of water.  Playing ipad.
 And sleeping.
 And how Allyn spent Friday.  Working on the computer (taking everything out of the desk drawer).
 Having a tea party.  And generally staying away from her brother. 
 
And just because you have a stomach virus and get over it doesn't mean you can't get it again 5 days later.  Nolan is home from school again today.  He woke me up just before 4 this morning vomiting in my bed.  Ben is out of town and both kids sleep in our bed while he is gone.  So while changing the sheets, I had to wake up Allyn.  She was crying because I woke her up, Nolan was crying because he was sick.  And I wanted to cry because I was having to deal with this while Ben is out of town.  Fortunately my wonderful (and I stress WON-DER-FUL) mother-in-law came over just after 5 a.m and took Allyn back to her house.  Nolan and I both went back to sleep around 7 a.m. and he woke back up at 9:30...still feeling gross (I couldn't sleep a second past 8 a.m.). So it's another day of recovery at the Scarbrough house.  Is it awful to say that I am completely and totally ready for summer to arrive and all of this sickness to be gone. 
 
 
Hopefully today will involve a lot more of this.