Home improvement

Curious about their world

Isnt it funny how the weather can affect your mood?  On days where it's bright and sunny it feels like there's so many possibilities.  Then there's those drizzling, cold wet days when you dont even want to change out of your warm pjs.  I'm so thankful that we're getting to the warmer weather, I think it can only bring good things. 

We've been working on spring cleaning lately.   Oh boy has our house become messy in the past year.  Things that didnt have to get done, just havent.  So the grime has just built up. Kind of embarrassing when people are coming to your house a couple times a week.  In past years we were able to get spring cleaning done in a weekend.  This year the cleaning has been going on for the past 2 weeks, and the sad part is you cant really tell.  It feels good when you finish a room though and look back at a new beginning.  Which usually lasts until the kids get there.  My favorite part is getting rid of all the stuff we havent used in the past year, and going through the girls closets.  So sad boxing up all the things they'll never fit into again, but oh so nice to have the space.  Anyone have any little girls they need clothes for?  We've donated a lot but there is always more.

Her leads, feeding tube hooked up, and farrelle valve hook up

So many things have happened in just a few days, it's sometimes hard to get it all straight.  We heard back from Alexa's neuromuscular doctor and although we dont have some of her tests results back we did get the result for the CTFD (congenital fiber tissue disproportion) it was negative...  Yay! Right?  Wrong...  Apparently there is more than one gene that can be affected by this disease so they're now testing the other gene.  Another few months of waiting begins. The way they test for genetic disorders at this time is that they come up with an illness that might be causing her symptoms and test for the specific DNA that may be affected.  Each test takes anywhere from 3 weeks to 3 months, and they're all very expensive.  We now thankfully have Alexa enrolled in a research program at childrens hospital Boston.  There are about 40 other families enrolled, and it's where they send all the medical mysteries.  This program has access to a test that can test Alexa's whole genetic make up at once and look for particular mutations that might point to a diagnosis.  Hopefully we will be able to get some more answers, quickly.

Patience, patience, patience...  Sometimes I would love to speed up time just so we could figure out what was wrong, and stop playing the what if game.  I do realize that by doing so I would miss out on so much of my precious children's lives.  It already goes by to quickly.  I'm just tired of not knowing, we know it's bad, but how bad.  Do I imagine the worse case scenario or can I hope, but if I dare hope and then that hope is dashed how much worse would that be. The doctor was also concerned because of Alexa's increase in weakness and apneic spells.  She seems to have more left sided weakness, although I dont know what that could mean.  I will say that yesterday she had a lot more energy, and seemed to be at least a little more interested in food.  Hopefully that trend continues.  

After her bath, lead free...

We also spoke with Alexa's pulmonologist concerning Alexa's increase in apnea spells and upper respiratory thing that doesnt seem to ever go away.  They scheduled her to go back to the hospital for more testing next week.  She's getting a sleep study done to determine if she needs to go on oxygen.  This will be her 5th sleep study.  Hopefully we'll just be there for 2 days but you never know how these things will go. Poor Kaylie's life will be disrupted again as she gets shipped off.  Thankfully she's going where she knows she's loved.  It's great to have such an amazing family, and support system.  Speaking of, my wonderful sister got us a free facial for this coming Saturday.  It'll be nice to have some girl time, and to see the family...  No Matt you are not invited.  :)

Playing ball... Big sissy is soo funny

Another positive...We are so fortunate that the early interventions program out here called REACH is absolutely wonderful.  They have been a constant support from the very beginning.  The extra hand holding we've needed to transition into Alexa's medical caregivers but still remain her family has been amazing.  I honestly dont know how we would do it without them.  They are helping us in every aspect.  From helping Alexa reach her developmental milestones (still working on that) to trying to help get financial benefits, possibily setting up respit (if I ever give in on that one) helping us cope with all Alexa's terrifying diagnoses, putting us in touch with support groups, just listening to me vent, and most importantly helping to give Alexa a future.  As of right now Alexa recieves occupational therapy/physical therapy, speech therapy, also a wonderful nurse comes out once a month to help with everything.  This week they referred us to a group that works with medically complicated children.  I'm not exactly sure what happens with this but it's another resource that is greatly appreciated. They also helped us to get into contact with Clarke school which is a non-hearing school.  We will be working with someone from their infant and toddler program to help get Alexa ready for the outside world. 

Best Buddies

We know that Alexa has a moderate hearing loss now, and dont know what it will progress to, but this program will help prepare Alexa.  They dont really teach sign so we are waiting to get her into a class for that. Sidenote...  It's kinda comical because Alexa's speech therapist told me to go out and buy a tube of bright red lipstick to help Alexa read lips.  If any of you guys know me, you realize that that is sooo not me, lol.  I just hope I remember to take it off before I leave the house. Also my sister Katy is going to be taking some signing courses through her job, and is teaching baby Kira to sign.  Yay, Alexa will have someone her age to communicate with.  Thank you Katy for taking the time to do this, it means so much to us.  Right now we're using the Signing Time DVD's to teach Alexa sign.  They are wonderful, because they teach sign language in a fun and interesting way.  Often times I'll look over and Alexa is attempting to mimic the TV.  Although if  she catches me watching her she quickly stops.  When she points to something that I dont know the sign to I try to quickly look it up on the computer.  We're so fortunate to live in this technological age where we can find whatever information is needed so quickly. Kaylie is such a great help because she will sign along side of me when my hands are full, and Alexa really pays attention to her.  As of now Alexa knows the signs for more, all done, open, in, out, help, up, dad (trying to teach her mom, but she signs dad for me too), eat, hungry, thirsty, water, milk, blankie, hurt, and binkie.  There may be a few more... I just cant remember right now.

Ive been struggling with the insurance companies lately.  There was a mix up and Alexa's mass health was canceled.  Not good because our primary insurance only covers 90% of stuff from her medical supply company and only 75% of Childrens hospital bills.  Alexa is our million dollar baby (literally) there is no way we can afford any of that.  Also her primary insurance is refusing to pay for Alexa's prescription formula that costs $55 a can (each can lasts about a day in a half).  So we getting a monthly bill for over $1000 for her formula alone.  Needless to say we need better health insurance, and are in the process of getting Alexa qualified for masshealth with a disability.  She should qualify, but it will take 60-90 days.  Oh the stress involved with straightening all this out.  We're also hoping the insurance will cover a piece of equipment the doctors ordered for her a while back, but refused to pay for previously.  Hopefully the sleep study will give them the information they need to cover it.  Otherwise we'll have to pay out of pocket, and it too is pretty expensive. At the end of the day I just have to look at our amazing little girl and remember it is all so worth it.

http://www.onetruemedia.com/shared?p=c72e082616c718deabcbb5&skin_id=701&utm_source=otm&utm_medium=text_url  This is a link to a video montage I made for Alexa's first birthday.  If you get a chance watch it.  :)