It Could Be Worse

This is our last week in Mesa and between trying to pack up our house by myself, attend Eli's last week of preschool activities, I'm cramming in as many doctors appointments and therapy visits for Isabelle as I possibly can.  We met with the orthopedic doctor this week and Isabelle will need to get leg braces to stabilize her footing.  She has hypotonia, which is basically low muscle tone and as a result she bends in ways that she really shouldn't and that most peoples bodies would naturally resist.  That makes it hard for her to get her footing and support her weight when she wants to stand - not that she's standing yet.  So she'll get special braces that go around her feet and up her calf.  As she gets older, they will get shorter and eventually end at either her ankles or just be special shoes.
It was just one more discouraging thing to hear in a busy, stressful week and I left the appointment feeling sad.  Sometimes it's hard not to look around and the kids of my friends and family and just want to cry.  I see babies the same age as Isabelle running, putting words together, doing so many things that seem so far in the future for us.  I miss having milestones just happen on their own, not having them happen months later than they should, after hours and hours of therapy.  Sometimes its just hard and all I want is a shoulder to cry on or an ear to listen.  Which is why I sometimes feel annoyed and frustrated when I share a worry or problem about Isabelle and I have to listen to: "It could be worse", or "my friend's kid had that happen and it's no big deal.  Happens to everyone".  Because I know it could be worse.  I spend every week in and out of therapy offices and doctors offices and the children's hospital.  I see worse all the time.  And it doesn't happen to everyone.  It is a big deal and its hard.  I constantly have to readjust my dreams for Isabelle's future and try not to get my hopes up.  I constantly have the doctors "worst case scenario" in my head, always making me wonder what will be possible for my daughter.  I envy friends and family who have healthy children and the whole world seems possible for them.  I remember when it was just Eli and my big worry was ear infections or the flu.  Now it's checking for sores that appear from the leg braces, the cost of orthodics for the rest of her life and the fact that having these bulky braces on her legs will make it even harder to crawl - which she isn't really doing yet - on top of all the other worries that were already there.  Worrying about just the flu or a cold seems like a gift these days.  I don't know what will be possible for Isabelle, I have no idea what her future will be like and sometimes, when we hit another set back, no matter how small it may appear, it just feels hard.  And I don't want to hear "it could be worse."  Sometimes all you really want is just want someone to listen and tell you, "it will be OK".
So we're getting leg braces and today, it's just hard.

Halfway through another long week

Honestly, this has not been the most encouraging 2 weeks.  Isaac has been in Sierra Vista for a week and a half now and I have been losing my mind in Mesa.  Just me and the kids, piles of boxes that we're collecting all over the apt., 22 doctor appointments, trying to pack up our apartment and spending way too much time trying to find doctors and therapists for Isabelle in Tucson. And lots of crying.  I can't decide what has been most discouraging out of everything - probably the phone calls.  I've literally spent hours on the phone trying to find therapists in Tuscon who work with our insurance and will work with our schedule.  You wouldn't think it would be that hard, but it is!  So as of now, we're moving in 10 days and have no home to move into (Isaac hasn't had any luck finding us a house) and no services for Isabelle set up.  When we do get services set up, I will be doing a 2 1/2 hour round trip drive for those services (long story, but due to Sierra Vista being small and only having a few therapy options available and because none of them accept our insurance, we have to drive to Tuscon for therapy.  Currently she receives therapy 5 times a week and Tucson is a 2 1/2 hour roundtrip drive).  I am so tired, emotional and worried about everything and my kids have spent way too much time in front of the TV while I've been on the phone and trying to manage everything, set up everything and be a single mom for the next few weeks.  Like I said, I've been crying a lot.

On the flip side, here's a few things that have been going on this last month (other than moving!).  Just a picture of the kids and I from Easter.

 Isaac and I got to go to Eli's school party a few weeks ago and he had so much fun.  He loves school.  In fact, we took Eli to the waterpark this weekend when Isaac came home on Sat. and he told us he didn't want to go, he just wanted to go to school.

 My friend Sandra came to visit.  We used to work together in Utah years ago and haven't seen each other since we both moved from Utah.  She came to visit for a week with her daughter Gwen, who is Izzy's age.  

 And my daughter, much to my dismay, is turning into a blondie!  I love her dark curls, but what can you do? She's still cute!

Cha, Cha, Cha, Changes

I cant even count how many times I've said in the last 2 months, "wow, things finally seem to be getting a little easier."  In Dec. we lost Isabelle's wonderful PT and OT and couldn't find replacements who were as good as they were.  Our insurance limited us to places we could go for therapy and no one had room for her in Feeding or Speech Therapy, so she wasn't receiving those at all.  But in Feb. she was accepted into long term care and after some trial and error we finally found all new therapists who were wonderful and the progress she made in the last 2 months has been amazing.  Plus, they all came to our home!  On top of all that, she qualified for respite care.  After taking forever to find someone, in March we got a respite worker named Sarah who started coming to  help out with Izzy.  It has been amazing! Finding someone I felt comfortable leaving Isabelle with was not an easy task. I was really worried about it at first and felt uncomfortable with the thought of having someone I didn't know helping with Isabelle.  But we called all the past families she'd worked with who only had amazing things to say about her and so she started. It's been wonderful.  Half of the time I don't even leave the house but just having an extra set of hands to help out has made my life so much easier.  She comes most afternoons from 3-6, while Isaac is working and we LOVE her!  

So, that being said, great changes have happened in the last 2 months which have made a huge impact on our family and made life start to feel a little easier.  Good things were finally happening.  And last week Isaac was offered a great new job!

. . . in Sierra Vista, Arizona.  Your probably wondering where in the world is Sierra Vista (join the club!)? It's 3 hours South East of Mesa, close to the border of Mexico.  All of those things that I just wrote about that were finally falling into place for us - gone.  Isaac is moving this weekend (he got the job and they asked him to move in 2 weeks) and we'll be following at the end of the month, while he looks for a house for us to rent.  I am stressing like crazy as I think about the next 3 weeks without him - 22 doctor appointments/tests for Isabelle, packing up the house and beginning the search for a house, all new doctors and therapists and respite workers for Isabelle.  Then, lots of 3 hours drives back up to Mesa to keep Isabelle's current specialist appointments (it takes between 3-4 months to get into a new specialist for the first time), as well as beginning the 1 hour 15 min. drives to Tuscon, where all of her new specialists will be.  Sierra Vista is too small to have specialists available.  That is probably one of my big concerns, I've loved living in a city and having so much available within a few minutes of driving. I've loved it even more since all of Isabelle's health issues began and there were so many amazing doctors, therapists and programs available to her.  

I actually have no idea what Sierra Vista will be like - this happened so fast we didn't even have time to go check out the town.  According to the website, the top thing that they advertise is the fact that they are the hummingbird capital of the world.  So I'm envisioning a lot of retirees, with binoculars around their necks, staring at the birds.  Now I'm not trying to sound bitter, I'm sure I'll eventually learn to love it, but for the last 6 years we've hoped an opportunity would happen to move us to the Northwest.  Now we're moving south east, to a town where the most exciting thing that they have to say about themselves is that their the hummingbird capitol of the world.  I'm worried, for many reasons, I'm worried.  But it's a great opportunity for Isaac, so we're going and praying that it will all work out.  

Until then, I'll be honest, I'm crying a lot thinking about Mesa and the things I will miss here.  But here's what I'm taking with me:

1. A kid so cool he wears sunglasses even in the bath tub

B. My signing genius.  We know speech will be delayed so we've been trying to learn and teach signs to her so she has a way to communicate.  Here she is signing 'more' for more food.

And here's what were hoping for:

 I'm hoping that we will finally be able to get a house with a yard! We are dreaming big and hoping that in S.V. Eli will have a yard to run around in and let some of that energy loose. 

And were hoping Baby Girl, who spends a good part of  her day like this (see picture below), will not have a big lag in her services and that she'll continue progressing the way she has and will start to crawl within the month (yes, I've set a date.  Probably shouldn't.  But she is so close and I'm praying, praying, praying that it will happen soon). 

And some good things about Sierra Vista (in case your thinking it's all bad) - it's only 90 degree average in the summer, so we'll be escaping Mesa right as the 100-120 degree weather is hitting.  Also, lots of bike trails and Isaac swears he is going to become a biking machine and start biking everywhere.