Shriner's, Genetics Test, Fundraiser and other Updates

Happy Post!  Glowing Face with big Fat Smile!  Yes...an All Good Post!  (just a few other names I really wanted to title this post)

This is going to be a doooozy of a post since it has been so long and I have much to update on.  I will try to make it short though so as to not bore you with too many words with extra vowels. 

Genetics

Yesterday was officially the three week mark since our genetics appointment and also the day I was told to contact our insurance to see if our appeal went through.  It Did!!!!  This means that Noah is going in for a quick blood draw today and we can save about $5,000 it was going to cost us for this test if our insurance did not approve our appeal for the test.  As happy as we are to get this done we are also very aware that we have a less than 5% chance of it showing us anything (also the reason we didn't want to fork out $5k we dont have for this test).  It is called a SNIP test or also know as the SNIP Microarray test. This test will take Noah's DNA and separate all the chromosomes and find out if any of the 23 chromosomes have any form of deletion or malformation.  According to our genetics doctor it is extremely rare for kids with SOD (Septo Optic Dysplasia) to find a cause through this test but he has been humbled too many times to say they never do.  In the off chance that something is found then it will give us more insight into what to watch out for in regards to Noah's other organs or our future offspring. 

Shriner's

Yesterday was also the day we had our first Shriner's Hospital assessment.  I honestly did not know what to expect and was a bit nervous to tell you the truth.  I so badly want to see improvement in Noah's development so I always get nervous when it comes to visiting places that provide hope.  The place is actually quite beautiful.  You walk into the main lobby and they have this painting on the wall made from bold and bright colors that is really quit eye catching.  You could easily pass time in the waiting room just by staring at this mural.

We had to pick a number and then wait to check in.  They took my insurance card and this is the part that makes me nervous.  I have been told that my insurance will cover 20 Physical Therapy visits a year and since Shriner's now bills insurance this will use up all 20 visits.  However, the cool part about Shriners is that we will never have to pay a co-pay and even if/when we use the 20 visits they will cover all additional costs that my insurance will not.  This is fantastic.  However, this also means that they have to use all 20 visits up front and therefore diminishes Noah's chances of going to this center called Now I Can until probably the middle of next year.   It is only September and so I would like to take Noah to Shriners as many times as possible to use all of the 20 visits we have for 2012.

We met with an orthopedic physician who was really fun and young and talented.  She spoke with us for some time and then said "so what brings you to Shriner's...how can we help you???"  I do not know why but I was stumped by this question.  I responded with "Well, with the help we are receiving with Early Intervention we are still not seeing the results and Noah just isn't developing like he should."  I think that was a pretty good answer cause then she had a full plan for us.  She is "plugging us into their system" as she stated.  They have a Physical Therapist, Occupational Therapist, Speech Therapist, and Dietician on hand that can help us.

Two minutes later the dietician was sitting down with us to go over Noah's nutritional needs.   Looking at Noah you see a chunky little monkey.  However, when you take his length (28 3/4") and his weight (19.3 lbs) and then calculate his overall percentage he is only at 18%.  According to this woman (who had the exact same voice and demeanor as the young female counselor off of the tv show Glee....brochure anyone?) a "typical child should have an overall percentage of 25%-70%".  So basically, under all those rolls Noah is still "underweight".  Crazy!  So he has a very strict eating plan for the next two months and needs to consume 850 calories a day.  In two months we will re-access and go from there. I never thought I was going to have to count calories for my baby and literally watch every single morsel going in or drooling out of his mouth. We have to bump up his calories with good fats.  Ideas anyone????  We are already doing avocado's and olive oils but need some other ideas.

Today I am supposed to call and speak with the woman in charge of scheduling physical therapy visits.  I have no idea how many we can schedule or even what the protocol is yet for Shriner's.  I am trying not to get my hopes up since I do realize Noah is only 10 months old and there is only so many things a young baby can do.  I will keep you posted and let you know how our experience is with Shriners once we are officially in the system :)

Early Intervention 6 month Goal Planning Session

As if yesterday wasn't big enough of a day we also had to throw in our Early Intervention goal planning or IFSP.  Every six months they reevaluate Noah to see what areas we need to work on more and also to see if he has met any of the prior goals.  It is a bit disheartening when they go down the list of goals and you have to keep saying "nope...he still can't do that."  Our first goal session was when Noah was 3 months old and at that time goals were set where they thought he could be standing on his own right now, saying a couple words, rolling all over the place, picking up cheerios and chewing on them.  This was all before he was attacked by Infantile Spasms and therefore is still unable to reach any of those goals.  Our new goals are much more realistic this time.  In six months we hope to see Noah putting weight on his limbs, holding his head up for ten minutes straight, gaining weight, holding a toy for more than three minutes straight, reaching out to grab something, sitting on his own.  I pray that these goals will happen but once again...try not to get my hopes up.  They will come eventually and I really need to work on my patience.

Noah's Fundraiser and Now I Can

Our good friend has started a fundraiser for Noah through a website called fundly (link on the top right corner of this blog).  It took my husband and I many weeks of discussion before we fully felt comfortable with the idea.  Nobody ever wants to feel like a charity case and it is still hard for us to accept the fact that we need financial help.  We are part of what most people would consider "middle class".  We both work full time jobs, have a mortgage, and both have a vehicle to get us to work and run Noah to all of his appointments.  We are hard workers, both have degrees, and consider ourselves to be very positive people.  However, it just isn't enough when it comes to having a special needs child.  Bill after bill and co-pay after co-pay has really taken a toll on us.  There are so many things we would love to provide Noah with....like the ability to walk and talk and eat. In order to achieve that we have to pay thousands upon thousands of dollars to get him into the centers that help him develop in all these areas.  Since we have been denied for medicaid and SSI we are on our own.  We are managing but with each month it gets harder and harder.  This fundraiser is going to be a massive help to Noah's development and about ten times a day I want to just cry because of all the love and support people are showing our sweet little boy.  It is times like this where I wish I could really show our gratitude in more ways than just words.  A simple thank you card just doesn't feel like enough and I have been racking my brain trying to figure out just what to do to thank everyone.

We have decided that Noah would really benefit from a place called Now I Can.  It is a intensive physical therapy clinic that is mucho expensive but really rewarding and we plan on using most of what Noah receives from his fundraiser to get him into this clinic.  Noah is a bit too young right now but next year we are hoping to get him in.  I have done so much research on different facilities here in Utah and this one seems to have the best results.  I can't wait to see what kinds of milestones Noah will be able to achieve once we get some really good hands on therapy for him. 

Noah's Fun Developmental Stuff

This is the fun stuff.  Pictures and cute videos of our sweet Bobaloo.  Last week Noah put weight on his arms for about 10 seconds assisted.  This is huge for us and we are trying really hard to build on this. 

Noah is a laugher and we LOVE IT!  His aunt and cousins seem to always get him going and he thinks they are just the funniest people on Earth.  I happen to agree :)

E.L.M.O.....Noahs newest favorite thing.  It was by accident that I even figured this out but it has already proven to be a huge thing for us.  Noah will actually try to focus on elmo and hearing elmo sing makes Noah work harder and longer.  I never knew I could love a puppet so much.  We are only on day three in the Elmo world but I am hoping that I can use elmo to entice Noah to do things like turn his head to see elmo or maybe just maybe get him to make some new sounds.  The video is sideways because it will not let me upload it when I try to change the direction for some reason. 

Funny picture I got of Noah yawning.  He just looked cute so I had to share.