Monday, January 24, 2011

Izzy is 1!

Today is Isabelle's first birthday.  I can't believe my baby girl is 1.  What a crazy year this has been.  Definitely not what we expected when we went into the hospital a year ago.  But Isabelle has been such a blessing in our home.  How did we ever live without that sweet little girl? We had a party for her this weekend and here are some pictures.  My friend Margaret made this cute outfit and hat for her (yes, it's true, now that I have a girl, I can't get enough pink).  And my friend Becca made her this cute cake, which she picked at and tried to eat a little.  She still is working at getting to eat more solid foods.  She started feeding therapy last week, after being on wait lists for a few months and is doing really well.


 We tried for a family pictures, but Eli was not willing to stop playing to join us for a picture.
 The only picture we could get of Eli.

Thursday, January 20, 2011

Update on Isabelle

Last week we took Isabelle to the geneticists at Phoenix Children's Hospital.  The doctor was hoping we would find a link tying together all the different things that have been happening with Isabelle.  After studying everything he felt 100% certain that she has Kabuki Syndrome.  It is a rare genetic disorder that only 1 in 32,000 children have and has only been discovered in the last 20 years, so it is considered fairly new. 

Heart defects, seizures, hypotonia, feeding difficulties, certain facial features that Isabelle has, gross motor delays - all these things that have been happening with Isabelle are a result of Kabuki.  Our worries are other problems that children with Kabuki have and that could occur with Isabelle - children with Kabuki are prone to infections, kidney problems, hearing loss, bladder problems, growth problems, and other problems.  What scares us the most is that 90% of children with Kabuki have mild to moderate learning and intellectual disabilities.  The doctor said it's too early to know what Isabelle will be facing, other than the difficulties she has already had, but he said we should prepare ourselves for the possibility that she will have learning problems and may never be at a stage where she can live and function independently.  We don't know yet, but he said we need to prepare ourselves for what could possibly happen. 

We only found all of this out this week, but we've spent much of the week in tears.  There are so many frightening possibilities and we weren't prepared for this at all.  It isn't a genetic disorder that Isaac or I carry the genes for and if we have more children our chances are still the 1 in 32,000 that the child will have Kabuki.  However, since Isabelle has it, if she has children, they have a 50% chance of carrying the disease. 

Right now we're just asking for everyone's prayers.  We will be continually be praying that Isabelle will have a mild form of Kabuki and that it will not affect her learning abilities and that she will be able to live a full life, without this disease holding her back.  Please pray with us for her and for us, that we will be able to deal with this and accept whatever may come as a result.  

Sunday, January 2, 2011

Christmas Week

Here are some pictures from Christmas week.  Eli has been very cuddly with Isabelle lately - not necessarily soft, but cuddly.  She's getting used to loving choke holds and being used as part  of an obstacle course for him to jump over.  We're not so accepting about it and are trying to teach him to be soft and not use his sister as an obstacle in an obstacle course.
 Christmas Jammies from Nanny.  Mom always gets Christmas jammies for the kids and takes pictures in front of the Christmas tree.  


 Eli's cousin got this toy for Christmas and she was good about sharing with him. Surprisingly, he was a pretty good driver.
 Eli got a bike for Christmas and has been a maniac, riding all over the place.  Unfortunately for us, we live in an apt. complex and he sees the teenage kids doing lots of tricks on their bikes and has been trying to replicate them.  I usually end up chasing behind with Izzy in the stroller, yelling "no Eli, no!".

Tuesday, December 28, 2010

Christmas Eve

Just some pictures from Christmas Eve - Isabelle in her cute Christmas outfit
The cousin gift exchange - they all went to the dollar store, picked out what they wanted, came home and another cousin wrapped it and they got to open it Christmas Eve night.  It was a HUGE hit!
 Eli's dollar store pick - pirate gear
Is there anything cuter than ruffle butt?
Christmas Eve Jammies - in my family we always opened a pair of pj's on Christmas Eve and took pictures in front of the Christmas tree.  Even though we didn't get to go home this year, we continued the tradition and I even got ambitious and made their PJ's this year.  

Thursday, December 23, 2010

A Robinson Family Christmas Letter

Merry Christmas everyone!  Here is our family Christmas letter, since I didn't send one out this year.  It's been a long year with a lot of changes, surprises, worries and joy.  

Isabelle - Isabelle is almost a year old now and brings so much joy into our home.  She is almost always happy, sweet, cuddly and calm.  In 11 months she's had over 200 doctor apts.  There has been heart problems, seizures, eating problems that affected her lungs, developmental delays, eye problems and a whole lot of therapy -weekly appointments with physical, occupational, and developmental therapy.  Right now we are trying desperately to find her a speech/feeding therapist.  There is a shortage here in the Valley and she is having eating problems, as well as not speaking.  We are also applying for a second time to get her into the Long-Term Care program, which would make our lives so much easier.  It would change her health care and allow her to receive therapists in the home, as opposed to driving to all appointments, and has other major benefits.  We're praying that this year we are able to get her a feeding therapist, as well as get into the Long Term Care program.  This would be a huge blessing for our family.  However, Isabelle's health is so much better than the doctors originally expected and not a day goes by that we don't thank Heavenly Father for our smiling baby girl. 

Eli - Eli  is a busy, busy, busy 3 year old.  He starts soccer next month, loves singing his ABC's, counting, and playing non-stop.  Something surprising we discovered recently was that he has a Sensory Processing  Disorder (SPD).  I was taking Eli with us to Isabelle's physical therapy appointments and after a few sessions the PT discussed with me some things she was noticing about Eli from watching him play.  He was tested and and has just started going to occupational therapy once a week.  If your wondering what SPD is, here is a good, simple explanation that I found online (on another blog of a mother who's also has a daughter with SPD).
  
"There are two basic extremes to SPD. Sensory-seeking is on the one end, while sensory-defensive is on the other. An individual that tends to be sensory-seeking is one that generally has a diminished sensitivity to input, and therefore, increases activity and sensory input in order to "sense" it fully. (I know....read that sentence about five times and maybe it will make sense. No pun intended.) These tend to be your kids on the playground that are always wanting the swing to be pushed higher, they want the TV louder, they dance on the dining room table, they run around in the rain with no coat on, they dig into finger paints with gusto...always seeking MORE input. Sensory-seekers are often poor at judging when enough is enough, so they overload themselves with too much high-end activity. To clarify further, her brain tends to under-react to sensory information.  When I first heard the word under-react used in this way, my mind said, so a child like that would be sluggish, right?  WRONG!  Its exactly the opposite.  A child that under-reacts to sensory information will seek MORE sensory input for the brain.  The end result.......a child that tends to seek higher, faster, farther, louder, etc.  
Jennica (the daughter of the woman writing this blog - although this girl sounds so much like Eli it is amazing) is the epitome of sensory-seeking.  As a toddler, she was a climber.  And a runner.  And a grabber of everything.  She wants to FEEL the world around her.  And for her to do that, she needsMORE.....in every way."

Eli has been tested to be sensory seeking, (hopefully that explanation helped a little).  Right now the goals we have set with his OT is to try to teach him the skills that he needs to focus and process, so that when he starts school in a few years he can be successful.  I am hopeful that this will help us to understand him better and make things better in our home.  Eli has always been all over the place with energy and craziness and this has been hard for us.  Often we feel like discipline and things that we are trying to teach him aren't getting through.  We are hoping that this will help not only Eli, but Isaac and I to know how to more effectively teach and parent Eli. 
Isaac - This year Isaac graduated from University of Phoenix with his degree in Information Technology.  He also got his CCNA computer certification.  He is now working for Go Daddy, helping people to create their own websites.  It's not what he wants to be doing, but he's getting experience and the company is really great and treats their employees well, which is a big change from where he was working before.  His hours are awful - 3:30-midnight, but it allows him to be home in the morning so that we can (usually) schedule all doctor/therapy visits in the morning and don't have to constantly try to find a babysitter for Eli.  It gives the kids more time with dad, and makes it a little easier for me, not having to constantly drive Eli to a babysitters, and trying to get Isabelle to the doctor.  

Me - This has been a hard year.  It seems like my life is taken over with the full time job of dealing with doctor appointments, fighting with insurance, trying to get Isabelle the care she needs and into programs that will help her receive better care.  I have spent hours and hours on the phone and am trying to not let myself get too stressed out and remember to sit down and enjoy my kids.  
We have been blessed this year in many ways that we never expected.  So many people have helped us in so many ways - family members, church members, friends, people we never met before - we've received so much kindness from so many people.  We have so much to be grateful for and even though this year has not been what we expected, we've learned a lot and our lives have been changed by the love and kindness of so many people.  Merry Christmas and Happy New Year!