Another week goes by

Just catching up today.  We saw a specialist about Isabelle's kidneys this week, which showed abnormalities on her recent ultrasound.  It looks like there are abnormalities, but they don't expect them to cause her any problems.  One thing less to worry about!  Ya! More amazing news to our family is that we (finally - fingers crossed) have all of Isabelle's therapists scheduled (in the last 3 months we've been through 7 different PT, OT and ST's, who have quit or moved away) and Physical, Developmental, Feeding and Speech therapy will all be in our home now!  Ya!  Look how happy that makes Isabelle - 

 Only Occupational Therapy will be not be at our home and that is because she is doing it in the pool, which is amazing! There are few therapists who do water therapy and we were lucky enough to snag a consistent time.  She is doing well and I think it's a good option for her.  She loves the water and the continual pressure of the water helps her work her muscles even more.  So now, of our 6 consistent weekly appointments, only OT for both Eli and Isabelle (Eli has been going to OT since Dec. when he was diagnosed with Sensory Processing Disorder) are appointments we have to drive to (and whatever doctor visits Isabelle has scheduled for the week)!  This is AMAZING!  We've spent so much time driving in the last year, the first time therapists started to come to our home I wanted to cry.

And, she said her first word this week - Mama!  I was so happy, it made my heart melt.  Now our big goals are crawling and walking (and adding more than 1 word to her vocabulary, although she has started signing a few words), because carrying around our 22 pound little girl is killing my back. And she is definitely not getting any smaller!

Last week one very happy little boy got to go see Thomas the Train!  I was really disappointed because Isaac and I have been planning on taking Eli forever and I ended up at home with a migraine and couldn't go. My migraines have gotten worse this last year (surprise, surprise with everything going on) and have been much more frequent.  So Isaac took Eli and they loved every minute.

 On the train ride

 We couldn't get Eli to turn around for a picture with Thomas.  This was the best we got.

Good things are happening here and we've got fun things we're looking forward to in the next few weeks - top of the list is Dodi is coming to visit from Oregon.  I've got plans to drag her around to all sorts of places and she's got plans to get a tan while she's here.  And take some pictures of the kids, which I'm really excited about!

Welcome to Holland

WELCOME TO HOLLAND

by
Emily Perl Kingsley.

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

c1987 by Emily Perl Kingsley. All rights reserved

I am so grateful I got sent to Holland.  

The Good Stuff

Time to update on the good stuff! 

1.  In Feb. Isabelle hit a huge milestone and began sitting up on her own!  She could already sit if we put her into sitting-up position, but she couldn't get from laying down to sitting up position on her own.  She finally started to on Feb. 7th (yes, I remember the day) and since then has become a champ at sitting up on her own!  She also said her first sound this week!  We've been waiting for her to speak - up until now the only sounds she's made is a cry and an 'ah' sound.  She started saying 'baa' this week!  I think one thing about Izzy's struggles is that when she hits a milestone, the victory means so much more.  It's not just sitting up that we think about - it's hours of sitting in the physical therapists office, working with her at home, prayers, tears, everything combined makes these moments mean so much more.  

2. Another highlight of this week - the summer clothes are out!  We have about 2 more months of enjoyable weather before the extreme heat hits, so we're enjoying the time outside that we can.  And the eye is starting to heal, and isn't as bloody and swollen as before (as you can see in this picture)!

3. Soccer is over!  I was hoping signing Eli up for soccer was a great move.  He has excess energy and soccer is all about running around a big field.  It seemed like a great idea. However, I overestimated his ability to follow directions and be involved in a team sport at this point in time.  I'm going to give it awhile before I sign him up for another sport and just enjoy taking him to activities he enjoys instead - the train park, open gym at USA gym, stuff like that.  So, I am really glad soccer is finally over!

Yes, I know it looks like he's having tons of fun, however, this is one of the 3 games he  participated in - and only for a few minutes before he went back to sitting on the side and trying to run down to the nearby playground or go to the train tracks.

4. My roommate from BYU, Chelsea, came to visit!  It was a short visit, but so much fun and so nice to get out and do stuff.  When she got here, Chelsea asked me what I wanted to do.  I started ticking off ideas - the zoo, library time, etc.  Those ideas were all vetoed by Chelsea and she explained she was talking about things that I wanted to do - without kids.  I blanked.  I honestly can't even think of a time in the last 4 years that someone has asked me that!  And I didn't even know what to say.  We ended up getting pedicures, going to the rock climbing gym, going to a new store in the mall that I've been wanting to go to, going out to eat.  It was so much fun and so nice to have a break from it all - doctor appointments, worrying, not being able to get out of the house without worrying about catchable diseases for Isabelle.  

An update on Cindy Lou Who

Tomorrow morning we go into Phoenix Children's Hospital for Izzy to have minor surgery on her eyes.  The ophthalmologist is concerned that her crossed eyes are keeping her from seeing clearly, as well as making it harder for her to figure out depth perception.  All of this may be making her fine motor skills harder for her to figure out.  Also, there is a problem with her tear ducts.  So, they are going to go in and fix those problems and we should be home by mid-day.  Whew.  Still makes me nervous however. 

I took Isabelle to see the developmental pediatrician this week.  It was a hard visit.  It's only been a little more than a month since Isabelle was diagnosed and we're still trying to digest the information, to take it all in.  I go back and forth from feeling calm and knowing Heavenly Father has a plan for my beautiful baby girl and panicking as I worry about what her future will be like - will kids in make fun of her?  Will she be lonely?  What will happen when Isaac and I die?  Who will take care of her?  Will she be able to care for herself?  Will she be happy?  The questions are endless and there are no answers.  At least, not now.  So instead I'm trying (not too successfully, but I'm trying) to just see what I have right now.  And right now, what I have is a baby girl who is the greatest blessing in our home.  You could not ask for a happier, more loving, content baby.  People in our ward are always commenting on how happy and smiley our baby is.  She couldn't be happier and we couldn't love her more. 

I'll write more about what the developmental pediatrician said later.  I'm not up for it tonight.  I also want to post some great pictures from our trip to Oregon,  and write about Eli, because I promise he is still here!  It's easy for us to get caught up in worrying about Isabelle, taking her to her appointments, running all over trying to get her into programs, make things happen for her.  Sometimes it's too easy for Eli to get overlooked (although he does everything he can to make sure that doesn't happen!) in the stress and shuffle of it all.  Just one more that I worry about.  Man, I've got to stop worrying!

Thanks to everyone for all the emails, calls and prayers.  I appreciate it more then you'll ever know.  It is so easy to feel alone amidst all that is going on, or to feel so overwhelmed and discouraged.  I've gotten so many lifts from the phone calls and the emails and the support.  Thank you.

Family birthday party for all the Feb./Jan. birthdays - My mom, dad, cousin Nick, Izzy and my grandma!

Isabelle in her cute birthday outfit from Aunt Dodi.

More 1 year old pictures

I think she looks like Cindy Lou Who in these pictures!

Our Beautiful Baby

Here are some pictures from Isabelle right after her birthday.  

Our good news is that she finally got accepted into Arizona's Long Term Health Care Cost Containment Program - whew, that's a name and a half.  Anyway, the benefits to being in this program are amazing.  So many new places she can now go to receive medical care, that our insurance wouldn't cover before.  It also means that she can start receiving therapy in the home.  Since she gets therapy 5 times a week, it is so nice to have the therapists come to us.  It works as a secondary insurance for co-pays as well as offers respite services who will come and watch Isabelle, so that I can run errands, take Eli somewhere or just get a break. There are more things that it will offer as well as she gets older.  

Getting into the program is a huge blessing, and we are so happy about it.