Sunshine

alexa in her dudu

You are my sunshine
My only sunshine
You make me happy,
When skies are grey
And no one knows dear,
How I love you ,
So please, dont take my sunshine away...

The simplicity of this sweet song depicts exactly how I feel about Alexa.  Sometimes I get so wrapped up in how sad I am.  I just have to look up because the source of my sadness is also the source of my greatest happiness.  Alexa's laugh just bubbles out of her. She has this inner joy/ peacefullness that I find myself taking solace from. 

The last 2 months have been bitter sweet.  Alexa has started putting on a bit of weight.  Which means no CVL/TPN at least for now.  I'm happy she was able to bulk up a bit before the winter and flu season hit.  Which officially started in this household 2 weeks ago.  So lets keep our fingers crossed that she bounces back form the latest illness at least maintaining her weight. 

There has been a lot of drama in the Bennett household lately....  So, nurses...  Both a blessing and now a curse.  I have to say its very hard getting used to people being in your home / private space all the time.  Never being able to have a conversation privately or lounge around in your pjs just because you can.  It got to a point where I was more exhausted dealing with the nurses being here than when I was here alone.  At least alone everything was done my way...  Alexa has had 4 nurses so far but one quit to take care of her dad (we loved her) and one of the others we ended up firing.  Let me tell you it wasnt pretty. 

Getting comfort from her buddies

All the nurses have different personalities and with that comes different strengths and weaknesses.  I accept that just as I accept that not everything will be done my way, but doesnt mean I dont want it to get done.  You know what I mean.  Anyway after having the nurses here for about 5 mths I realized I needed to change some things.  I decided to make a schedule.  This just outlined Alexa's day and any medical necessities she needed such as dressing change, cough assist, chest PT, meds, ect.  There was nothing that was not a medical necessity on the schedule I assure you.  I was not asking for my dishes to be done or anything like that.  I just wanted Ali's day to go smoothly.  I wanted her to have a routine so she would feel she had an understanding of what was going to happen next.  I also was going to start work so I wanted Alexa's nurses to know exactly what was expected of them. 

Cousin Kira

I spoke to the nursing supervisor on one of her routine visits to make sure this was an ok idea.  She assured me it was a great idea, and to do what I was comfortable with.  I sat each nurse down explained that although they were doing great, and we had no complaints we just wanted everyone to follow the schedule.  So that way everyone was on the same page everyday.  Two of Alexa's nurses accepted this with no problems, stating they thought it helped.  The other didnt say anything, but all of a sudden her attitutude changed completely.  She started making nasty comments to me.  To the point where I would leave the room to call Kevin and complain to him.  It was getting to the point where I was uncomfortable in my home.  She would refuse to answer direct questions reguarding Alexa's care, and just always seemed angry.  Like I couldnt approach her.  Kevin and I discussed things and decided to have a sit down with her to see if we could get to the bottom of things.  In my head we would work everything out and everything would go back to the way it was.  She instead got very defensive and started saying all this stuff about us.  Until I asked her to leave as she was making me and my family uncomfortable. 

Orsey!!!

You would think it would just end here... but no.  She decided to call DCF on us.  She made claims that we were neglecting our children.  That it was an unsafe environment for Alexa.  She stated we had to many animals and something about animal carcasses....  I dont what else she said but it boiled down to a bunch of lies.  Of course this is devestating for our family.  As she knew it would be because she knew what we had gone through before.  When the man from DCF came to our door he actually laughed and told us that they get vindictive complaints all the time.  It's just sad that someone would abuse their position that way.  Everything she claimed was unsupported but still.  Now there is a record that they even came to our house.  It brought back so many awful emotions.  I've been in a pretty bad state over the whole thing.  Not to mention that the company she works for I currently work for as well.  I mean this is going around the place I work! 

Anyway this was about 6 weeks ago and we still dont have those nursing hours filled.  It's been kind of a nice break.  But now as Alexa starts getting sicker it'll be nice to have some more help.  Especially with me working more.  The one thing I've learned from all this is to not get to attatched.  Be friendly and open but not so much so.  I'm taking the emotion of feeling bad or hurting someones feelings out of it.  If I get a funny feeling or if something is not going the way we would like.  I will not hesitate to call the company and have the nurse replaced.  Although this time I'll let the company do the firing.

cousin Ella

Alexa just got her wheelchair in.  She loves it.  It's great because it has a smaller base for in the house, and a nice tray so when she's tired she can sit in there and do all sorts of activities.  She was also blessed with an ipad through the state.  This has been wonderful for her.  We're going to be getting a special app that will help with her language and basically be her voice.  It's neat because she'll have a bunch of pictures to pick from and she can put them together to make sentences and it will actually say out loud what she wants.  We dont know which app we're getting yet because I havent done enough research and we're going to this special augmentative clinic in Boston to help us figure out which one works best for her.  I'm hoping that this cuts down some of her frustration when trying to express what she wants. 

The ipad is also great for her because unlike most other 2 years she cant just run from toy to toy without paying a high price of exhaustion.  She has limited energy and needs to use it sparingly so her body can function to do the things she really needs it to do, like breathe. 

Return from my hiatus

I know, I know, It's been over a month since I've written last.  I've had good intentions of writing, but life has been a bit chaotic lately and it's been harder to keep things up to date.  Heres a few pics of the family.  Thank you Robin you did a beautiful job!

Alexa seems like she is bouncing back from her "difficult time" the last 3 months.  She still has a long way to go, but we are seeing some improvements.  She is now on some new medication for pain that seems to be working a bit better.  Not perfect, but better than it was.  The docs decided to put her on Neurontin which isnt generally used for the type of pain she has.  It can be used for seizures or nerve pain, but they also use it in children who have a severe neurologic impairment who are experiencing pain with no known cause.   We decided to give it a try, and guess what it worked!!!  A little side benefit is that it can also help control her seizures, which she has been having more frequently.  I would still like to find something to take the edge off her pain when it gets really bad, but this is definately an improvement.

 Alexa has been losing weight since her surgery in April.  She lost almost 2 lbs...  On a kid her size it really shows.  She started developing wrinkles where her skin would just sag, like where her bum used to be, under her arms, ect.  It started feeling like she was fading in front of us.  I called her GI doctor a few times to see what they could do, but it was almost like they didnt understand the severity of it.  We saw the GI specialist on Monday.  He was so concerned about her weight...  She now needs to be on her tube feed 22-24 hours a day instead of the normal 18.  He wants to see her back in 2 weeks, hopefully by then she'll have gained a bit more.  It's frustrating because I was trying to tell them my concern for a couple of months now, and only when he actually saw her did he do something about it.  Looking at the growth scale she now is about an inch below the chart.  They are not sure why she isnt gaining.  One of the symptoms of noonan's is failure to thrive, but her doctor doesnt think it's to that severity.  One theory is that her body isnt getting enough calories to function, and gain.  Another theory is that she isnt able to absorb the calories and use them properly.  If Alexa hasnt started to gain by the time we see her doctor the next step will be a central Venous line and TPN (total parenteral nutrition).  This is scary for me because its a host of many other issues, namely infection. 

Which brings us to the appointment we had last Friday with a metabolic specialist.  He's wonderful...  We were thinking for a while that maybe she had a mitochondrial disorder, but that is looking less likely now.  He has a few ideas as to what might be causing all her issues.  I dont think I can recap everything properly, just because there was sooo much information.  I'll try to summarize as best I can.  One possibility is that she has a problem with her sugar breakdown and wastes.  That things are building up, causing the worsening of her symptoms.  Another idea is that she has a problem with a section of her DNA.  So her DNA may have  an entire area where it isnt put together properly or maybe missing things.  They cant test for that right now, so right now they are trying to match up her symptoms with disorders they know about.  However its like looking for a needle in a haystack.  Each test only looks at the one disorder and takes time and costs thousands of dollars.  So its a very lengthy process.  There is a test that is just coming out now that looks at the entire DNA and can pick up abnormalities with in the entire DNA sequence.  They are just in the trial stage for this.  They talked to me about having Alexa go into this trial.  I was all on board with this, and maybe we can finally get some answers.

I dont know if I mentioned before that ALexa is now involved with CCS (complex care services) which gives us a doctor to connect the dots between all her specialists.  It's been a godsend so far.  Anyway since starting to see them a month back they have scheduled us 8 appointments within 5 weeks.  On top of all her normal appointments.  Which means we've been very busy and spending a lot of time in Boston. 

Although Alexa has been having a rough patch lately, doesnt mean she's suffered with her spunky personality any.  Her favorite thing in the world is to visit animals.  We went away for a week and everyday we visited this little farm.  We had so many other things we wanted to do, but thats ALL Ali wanted.  She'd wake up and say "moo" meaning the baby cow.  They had chickens that would come eat at our picnic table she thought this was hilarious.  She's learned a new dance move.  We tell her to shake her booty and she bends over and her whole body sways side to side.  Really it is quite adorable.  She started putting a few words together.  like "no daddy, no mommy and exa ants (Alexa wants)"  these are her favorites.   She loves to tease people, but she is so sensitive you just have to look sad and she'll come give you a kiss.  I had a scratch on my ankle and everday shed kiss my owie better. 

Its been an emotional ride the last couple of months.  Alexa has had a few ups and a lot of downs.  We're hoping to get her to a stable, pain free place.  Thank you for bearing with me especially after my long hiatus I'm really going to try to write more frequently.

hanging with her cousins from Canada

giving "Barney" a kiss

Where's Alexa part 2

I want to update just a bit.  Right now I'm finding it very difficult to write about whats going on with Alexa.  Writing has been very therapeutic for me, however sometimes it makes everything much more real.  I cant seem to gather my thoughts, and put them down on paper lately.  So I'm going to give a very brief update, and post a bunch of pictures.



Alexa in pain

Alexa has been on a very difficult road since her surgery in April.  She developed an abdominal infection, which we think was introduced to her during her surgery.  We have had many ups and downs with her since then.  To the point where we were thinking we were having to say our good byes.  Alexa was needing oxygen almost continually, and was in so much pain...  Pain...  She at times has cried continually through out the day and night.  The pain cry...  Seeing my baby shake from pain, being unable to move, and looking at me begging me to fix it.  I feel so helpless during these times.  It's not right that she be in that much pain.  Sometimes it all gets to be to much for me.  I find myself escaping when the nurses are here so I dont have to continually here my daughter cry and not be able to fix it. 

Kevin and I have started talking about the time we have left with her.  This is a very sad and hard thing to accept.  We've talked about how we need to make the time we have with her count.  Quality vs quantity.  I've come to realize that sometime in the past 2 years we started just making it by day to day.  Our focus was on getting through one bad day or period to just start all over again the next.  WE need to start living each moment like its our last.  So cliche I know, but very true. We have to stop focusing on all the things we cant change and start enjoying what we are given.  Which is two amazing beautiful little girls our gifts.  WE want to be able to look back on this time as time well spent.  If that means just cuddling with Alexa and reading her a story or visiting the pet store because she loves animals thats what we need to do.  No, we do not have a lot of money right now, and yes our lives have taking a drastic turn from where we were financially before to where we are now.  That stuff doesnt really matter.  I want to look back on this time with no regret.  I dont want to be feeling like I should of spent more time with her just being with her is enough sometimes.  I dont know if that all makes sense, but it has given us a fair amount of peace about things.

Now I'm not saying we ignore the other things going on in our lives.  Finances are important... I actually just got a part time job (I dont know when I start though), this should help.  Also there are times when I just need to cry.  I've come to accept that this is needed, and it's OK to cry.  I just cant be sad all the time.  Anyway thats all for now.  Just please pray for our sweet baby, and that the doctors can find a way to help control her pain a little better.  Here are a few pictures of our lives recently. 

Where's Alexa???

I might have to break this up into two parts.  I want to update about Alexa's Surgery but there has been so much else going on I'd like to update as well.  I guess we'll see how it goes, and how the thoughts decide to flow...

So if you've been following along I'm sure you know we've been preparing for Alexa's surgery and recovery.  This was not an invasive surgery so recovery time should be short...  Alexa had four different doctors working on her so although this wasnt a very invasive surgery it was a very long surgery.  The concern with her is because she has so many respiratory issues how would she respond and recover with the anasthesia.  I wasnt nervous about this procedure until the week prior when the anasthesiologist seemed all concerned. 

So Tuesday 5am rolls around its time to get up and out of the house.  Alexa has been getting pedialyte from her tube all night to keep her hydrated.  We have to stop this at 5 am.  Alexa is not very happy we decided to get her up so early.  First stop preop.  Here it seems like you're waiting forever just to get a bracelet and do insurance paperwork.  They had a nice set up with childlife specialists that played with Alexa and did some arts and crafts with her while we were waiting.  Ali was happy because they gave her stickers. 

Finally...  Time to go to our preop cubicle.  Alexa's was so upset at this point she knew something was going to happen that she wouldnt like.  This is where the patient is supposed to get undressed put the johnny on, get an IV and sign all the consents for surgery and anasthesia.  Well the only thing Alexa allowed us to do was sign the consents, and talk to the docs.  They gave her some meds through her gtube to calm her down.  Someone also gave her a balloon which also became pretty hillarius to Alexa in her loopy state.  Off to the OR I dressed in some blue scrubs and was able to bring Alexa to her OR room and hold her while they gassed her to put her to sleep.  This was around 9:30am. 

Kevin and I head off to the family waiting room.  There is a nurse liasion there that you check in with who will give you updates if needed and also takes your cell phone number so you can leave.  However she didnt think it was a good idea for us to leave because Alexa had so many procedures and we would be getting so many updates.  We just prepared for the long wait.  Until we got the first update both Kevin and I dont usually talk to much as the tension is high as to whether everything is going ok.  After that we are able to relax a bit more as the day goes on.  I remember looking at my toenails at one point and being mortified that my toenails werent painted and were OMG chipped!  For some reason that became all I could focus on.  I started worrying that everyone was looking at my toenails and thinking terrible things.  I ended up running to CVS and buying nail polish remover, hiding in the bathroom and taking all the paint off.  It seems silly I know, but I think it was my minds way of letting me focus on something else other than Alexa.  Guess what, it worked...

One by one the docs working on Alexa started coming out to give their updates.  After almost 4 hours we were finally taken straight up to the cardiac ICU to see Alexa.  Baby girl was recovering nicely.  She only had a couple of instances where her oxygen dropped, but was able to rebound nicely.  At one point Alexa started to spike a fever and I felt like the nurse wasnt really listening to me when I said that it would continue to spike unless we gave her something.  We had already given her tylenol.  She needed Ibuprofen, but it needed to be ordered.  It took nearly 4 hours to get her the ibuprofen by which time she was already very flushed and burning up.  The nurse never even took a temp...  Needless to say I was a bit frustrated.  I was putting cool cloths on her just to bring her temp down.  It finally broke in the middle of the night and she was drenched in sweat.  Yes I know she spikes fevers all the time.  I was nervous because a) she just had surgery and I didnt know how this would affect her autonomic system, and b.) if we dont medicate her right away her fevers tend to keep on rising being very difficult to bring back down.  Her little body was dealing with a lot of stress already. 

While we were inpatient I wanted the wound care nurse to take a look at Alexa's gtube site.  Its been pretty bad lately very red with broken skin, and painful.  It leaks all the time.  Well the wound care nurse looked at it and said GI nedded to come take a peak at it.  They came in and said it was too tight we needed to get the gtube changed ASAP and changed her dressing completely.  This delayed our discharge time and was going to make Kevin late for work, but it was worth it.  We made the gtube change for the following day. 

During this time Alexa seemed pretty good, she was definately fatigued, but didnt seem like she was in any real discomfort.  The following day we headed back to Boston to get her g-jtube switched out.  This seemed to push Ali over her patience tolerance.  She was so mad!

I wanted to write more, but unfortunately i dont have the words right now.  Alexa is having a very difficult time, she is in so much pain, and very unstable.  We are trying to enjoy the time we have with her.   Please keep her in your prayers