38 hours

Daddy love

I know I promised to update more frequently, and am in fact doing the opposite of that.  Kevin has been staying up at work during the week as gas prices have been drowning us.  The weekends have become our busiest time and Kevin has become a most wanted man.  The girls cant seem to get enough of him, and I too am quite impatient for his company.  Needless to say the computer seems to be the last thing on my mind even if I dont see it all week. I will say that about a week ago I typed up an update but when I went back to edit it, it was accidently deleted.  How very frustrating, and I didnt have the time nor patience to rewrite it.  So please bare with me as I try to remember what needs to be updated. 

Alexa's favorite spot on her bean bag

Alexa has been having a tough couple of weeks. If you've been following along you know that Alexa has been dealing with some sort of respiratory infection since September. This has not improved.  She has had five ear infections including two ruptured ear drums and is now working on a double ear infection.  I am hoping to avoid putting her on antibiotics yet again, but may lose that battle if she doesnt improve soon.  This puts getting her tubes in until her ears are completely healed.  Update as of 2/23 Alexa now has pneumonia.  This could be tragic for her as she has a hard time fighting things off and is more at risk with all her breathing issues.  Please keep her in your prayers as she battles this.   We've had a few sleepless nights and are in for a few more I'm sure.  Poor baby is miserable and sounds awful, my goal right now is to make her as comfortable as possible, and am trying to keep her lungs as clear as I can.  I attempt this by increasing her chest PT and cough assist with suction.  I dont know if it's working, but it cant hurt.  Keeping her fever down is another challenge as it seems the tylenol and ibuprofin dont seem to always work with her.  With pneumonia we also have to worry about dehydration and keeping fluids in, this is difficult because she doesnt really have the desire to take anything in by mouth.  So now we are putting her on pedialyte via her gj tube for anytime she is off her formula.  So she will be connected 24 hr a day for a while.   We are hopeful that this is just another bump in the road for Alexa.  She is such a sweet girl.  Today I was able to make her happy just by dancing with her since she is unable to dance on her own right now.  She was giggling that sweet baby laugh that fills me with joy. 

Unfortunately this isnt the only complication Alexa has had lately.  We've noticed that Alexa has a right sided weakness where her right leg basically lags behind.  It's not to noticable unless she is fatigued, and then it is much more pronounced.  This is scary in that this is a progression in her muscle disorder that we can visualize.  Our options are limited.  She wont be able to gain back the strength and coordination she's loss but now our hope is that we can slow down the progression of this disease by keeping the rest of her muscles toned. 

Before the food ban

About three weeks ago we noticed that Alexa started choking anytime we fed her.  This started intermittanly but has progressed to the point that anytime she puts anything in her mouth she's choking.  You may be thinking I thought she was tube fed, why would she be eating?  We have been able to get a few things into her orally for the past year now.  She even has her favorites.   She has been able to drink thickened liquid, which is just whatever we drink with this special powdered substance that we mix in it to make her drinks between a nectar and honey consistency.   Now that she started choking the doctors have decided that she has to be on a strictly pureed diet (ex. applesauce, yougurt, babyfood).  How do I tell a two year old that she can no longer have what she wants (even though it was never a lot) and now has to eat purees.  yuck!  It has been a very difficult transition.  The only good thing about her having pneumonia is that she has no desire to eat and this has lowered the amount of fits.  If you can call her lack of twoness a good thing.  I've been making a lot of fruit smoothies that she seems to enjoy.  I'm on the look out for any good smoothie recipes, and also some good thick soup recipes to vary our menu a bit.  So if you know of any let me know.

Alexa has the best big sister

Last week she saw her GI doctor.  Her stomach issues have become a lot worse lately.  Her pain at night has become intolerable.  She wakes up from pain screaming and uncomfortable for hours at a time.  Nothing seems to help, it makes me feel so helpless seeing her in so much pain and not being able to do anything about it.  The doctor started her on a new medication to hopefully help with this.  The only downfall is that it will probably make her very sleepy.  We are titrating her dose very slowly to get optimum results.  Another issue Alexa has been having is that she has been vomitting a lot more.   Alexa has dysmotility this affects her ability to digest things properly.  Her, digestive track moves at a snails pace, and we give her medication to help it along.  However recently this hasnt been helping as much, so her doctor increased her nightime dose and we're hoping this does the trick.  We've noticed that night her belly becomes very distended causing her to leak bile at her tube site which burns her skin.  Dr. Nurko(GI doc) also is scheduling her for another swallow eval so we can see why she is choking on everything.  His eyes lit up when he found out she was getting tubes put in.  When she goes under he'd like to run a few test including another endoscopy.  That makes four doctors who will work on her when she goes under.   Unfortunately we just found out that this will be put off for at least another 6 weeks due to her pneumonia. 

Lately I've been finding myself crying whenever I think of Alexa.  Sometimes I'm able to pretend that she's like every other kid.  I'll find myself thinking of her in the future tense and then stop myself because we dont know where she'll be.  It's hard to pretend when I see her fading away in front of me.  I'm having a hard time thinking about her not being... Not being able to hold her, not being able to smell her sweet baby smell, not being able to feel her soft baby curls, not being able to hear her beautiful baby laugh and babbling, just not being here for me to love.  How do I live if she isnt here, how can I go on?   She's become our world and the thought of her not being here to love anymore, has become my nightmare.   I have to stop this train of thought before I find myself to sad to write anymore.

Our pretty girl

It seems like everything I've written so far is very negative.  Let me assure you there are so many happy moments.  Alexa is this little joy, her accomplishments are our accomplishments.  Lately she's been picking up a lot more speech.  If someone else were to listen they might not be able to make anything out, but we can pick out what she is saying or what she means.  Sometimes by signs or a mixture of signs and vocals. This makes us so happy.  Her little personality is forming into this beautiful little person.  She is such a girly girl, she loves shoes, getting her hair done, and carrying purses.  She now has a baby doll she doesnt go anywhere without.  This is neat because whenever we have to do anything at all invasive we do it to her babydoll first and this seems to help her deal with whats to come.  I recently tried my hand at making some doll clothes for her.  Apparently I'm not that good as my sister saw them and immediately asked what's up with the ugly doll.  I was just tired of seeing it always maked around the house.  lol

Not sure about this...

We did recieve some good news.   We finally got our answer back from mass health reguarding a nurse for Alexa, and were approved for 38 hours a week.  Yay!  This means that I will hopefully be able to get a part time job, and may also have a little me time.  I cant imagine spending so much time away from Ali, seeing as the most time spent away has been a couple hours here and there a handful of times.  I dont plan on being away the entire 38 hours.  I'm hopeful for about 20-24 hours of work. This seems almost bittersweet, I'm feeling conflicted about spending any of my precious Alexa time away from her.  Yet I know it's needed for a healthier relationship. I dont want to miss anything with Alexa... but it will be nice being able to contribute to our very limited budget, and getting some sleep when we have a sleepless night.  We're in the hiring process right now for nurses.  This is a lot harder than anticipated.  A lot of nurses we spoke to would be great hires as coworkers at a hospital or other setting, but I have to remember that these people will be coming into my home being with my family.  So I've decided to be very picky.  In doing so I have limited my choices.  I have found 2 wonderful nurses, but still have 18 hours to fill.  If you know of any great nurses looking for work in southern MA let me know. 

Not even the  cat ecapes dress up...  Super Gabe!

I know that I've probably missed some stuff from the past month, but I think I hit the most important things.  I really am going to try to write more.  So hopefully you'll hear from me soon.  Thanks again for all the continued prayer and support.