Alexa's birthday slideshow

For those of you who cant be with us for Alexa's 2nd birthday party.  I put together another slideshow so we can cherish her big and small moments always.  I hope you enjoy.

Dream vs. reality part 2

Walking at our waterfall

If you got through my previous post without falling asleep I applaud you.  lol

The past couple of weeks have been very eventful it seems.  Almost everyday there has been something. From my aunts lovely dinner and ice cream sundays to Kaylie waking us up in the middle night with a sky high fever.  I've spent a good amount of time trying to get the medical supply companies all set up.  We have a lot of the transfer complete just working on some minor and then some major things like her feeding pump and some particular supplies.  Hopfully we can get that all smoothed. out. 

Friday my parents watched the kids so we could go out and went to a get together with my cousins.  Can I just say that this was the most fun we have had in a really long time.  We felt normal for a night, and yes I got a bit tipsy... maybe laughed a little to loud at someones jokes and ate mcdonalds at 2am but it was nice to have a break from all the responsibilities of the world.  I liked being able to let go a little.  If you had asked me that the next morning when I felt like death I may have given you a different answer.   Especially seeing as the rest of the world wanted me to wake up and all I wanted to do was bury deeper under my blankets.  But it was worth it.  Thank you Becky and the rest of my cousins who were there and Auntie Laurie for a great time, I needed that. 

Saturday my parents, us, my grandparents, Matt, Mary, Ella, Katy and Kira went out to eat for my birthday.  It was so nice to get together.  However Alexa was not having it.  She was miserable, so miserable that Kevin ended up leaving and taking her home without even eating his dinner.  We found out later that she was terribly constipated, and having a ton of pain.  Poor baby.  The food was excellent the service eh... not so much.  However it was quite embarrassing when the dj guy took the mic wished me  happy birthday and had the entire (yes entire) restaurant sing happy birthday to me.  Everyone turned in their chairs and sang.  I was so embarassed!  but I can laugh about it now. 

Sunday should have been uneventful.  Our only plans were to grocery shop watch the football game, and for me to finish organizing all my records for the trial.  I had to reread all the documents DCF had on me and got very depressed.  I felt like the whole thing was so hopeless.  Kevin decided to give me a break and do the groceries with the kiddos so I could have some time alone.  About 20 minutes later Kevin frantically comes into the house holding Alexa.  He accidentally pulled her GJtube out.  It got stuck in the grocery cart, and Kevin felt so terrible.  This has only happened one other time when I got it stuck in Alexa's carseat.  Needless to say this meant a trip to the hospital.  After speaking to the GI doc on call they told us to just go to Boston.  I was feeling so depressed about everything I dont think I could handle a trip to the hospital.  Feeling like people were looking at me like I pulled out her tube on purpose.  Not saying thats what would have happened but thats how it feels, when your suspected of something.  Kevin decided to take her in to help me out.  This is the first time I havent been with her when she was in the hospital.  I felt awful,, I should have just gone.  They ended up staying the night so she could get IV fluid, and they put a new tube in first thing the next morning.  GJtubes have to be placed under interventional radiology.

Kaylie was so upset by this entire thing.  She was at the grocery store with Kevin when this happened  and she absolutely hates blood.  Of course when a big ballon gets squeezed through a tiny hole in your stomach there will be pain and there will be blood.  Kaylie was crying saying I wish my baby sister wasnt sick.  I pray to God everyday that she doesnt have to be sick, but she still is.  Then she was crying because she couldnt go to the hospital and she thought Alexa would be afraid without us. 

Turns out she was right.  Alexa is not used to being away from me ever, and especially not when she's in the hospital.  I have only ever left her for about a half hour when she's inpatient.  Poor baby didnt go to sleep till almost 1am.  Everytime I would call I would here in the background this pathetic momma whimper.  It made me so sad.  Never again, I have to be there for her no matter what.

Alexa at the hospital with her lovie

Alexa has a green blanket that is her absolute lovie.  She has loved that thing completely since she was very young.  Anyway she usually just needs it during naps or when she sleeps.  If she is having a bad day I'll give it to her for some added comfort, but it's not something she has to have.  Up until this hospital stay.  Now she has to have it touching her at ALL times. 

She's been a lot more fatigued lately.  I guess thats to be expected though as she's been very busy.  (may be TMI for those who get grossed out easily)For the past 3 weeks Alexa has been getting very constipated.  For Alexa this is strange as she normally has loose stools.  She was so constipated the other day I thought she was having a seizure briefly because her entire body was shaking.  I actually got up to run and get her medication.  Then realized what was happened.  She screams in pain and it sometimes can take hours to get a little pellet out.  This is bad news for Alexa as she has dysmotility and this could cause a blockage of some sort.  So she is going to start taking a stool softener on top of her metamucil.  I just hate seeing her in pain and there is nothing else I can do about it.

Also today she was very uncoordinated with her movements.  She couldnt even stand up.  It scared me.  I thought well maybe it's her shoes and they're hurting her feet.  So I took them off but there was no change.  She couldnt place one foot in front of the other even with me holding her hands.  So we rested and about an hour later she seemed much better.  Still fatigued but at least able to support herself.

We went to Boston yesterday to meet with a cardiologist who specializes in autonomic disorders.  Unfortnately he gave us news that we really did not want to hear.  That she has something wrong with her central nervous system.  That she has an autonomic disorder, but pinpointing a specific diagnosis may take years if at all.  As there are so many unkowns with this field.  So even if they did figure out a gene that may be causing some of her issues she may be only one of a handful or the only one who presents the way she does.  What does this mean for Alexa?  He said that right now we need to be providing her comfort.  So we're going to treat her symptoms.  There is no treatment or cure to "fix" her. However he doesnt feel right starting her on a beta blocker or another medication just yet because the side effects may be more uncomfortable than the symptoms right now.  I asked what this would mean for her prognosis, and he said that although he can not predict the future.  We can assume that she'll have periods of stasis and periods of rapid decline where the symptoms get worse.  In times where she appears to be declining fast we need to be prepared for anything.  The best thing we can do right now is to try to keep her healthy.  He explained it to me like this.  There are 3 types of cars the ferrari's the midgrade car and the jalopy.  Alexa is a jalopy (yes he just compared my kid to an old beat up car)anyway if you keep the jalopy tuned up to the best of it's running ability  you can have that car for a few good years.  He said it doent matter if its a ferrari or jelapy if you dont do tune ups and it break it still breaks.  I thnk he was just telling me to try to keep her body as healthy as I possibly can.  That illness and dehydration can really cause her a major setback and in her case may be life threatening.  As far as the fevers her sweating and heartrate we should try to treat the fevers with what we have and if the heart rate becomes more of an issue we'll address that as well.  He said that he will be discussing things with the major players in Alexa's care, and we'll go from there. 

What do I take from all this?  It's very distresing news but I have been preparing for it since August when we had that major setback.  I see the little bit of decline in her.  Just a bit more fatigued, sleeping more attempting to eat less and her eyes.  The sicker she is the droopier they get.  It seems now we cant go out in public without someone exclaiming about how tired my kid is.  I just nod and smile, but part of me cringes inside, because if a stranger can see it, it's not just me being overdramatic...

Alexa wearing daddy's shoes

Today was another very busy day.  I had Kira and had to take the 3 girls to Childrens so Alexa could have a hearing test and her ENT could check out how her perforated eardrum was doing.  She absolutely failed the hearing test doing much worst than she has ever done before.  However she has developed another ear infection in her left ear and this may be causing more hearing issues.   So the decision has been made to put tubes in her ears.  While she's under he will snip her attatched frenulum.  He said something that made me a bit nervous.  He said that if Alexa hasnt started developing speech yet there is a good chance she doesnt.  For some reason I was under the impression that we still had time...  Hopefully we can get her hearing at her best, so this can e avoided.  After her tubes are place we wait 6 weeks and have her tested again.  I was really hoping that while she was under we could do ABR testing but apparently once they get tubes placed it can mess with the results. 

My SIL Maryanne was able to calm me down about the speech issue.  She's a speech therapist and has seen kids who can only say one word start to speak in sentences.  I would love to hear Alexa talk.

Dream vs. Reality part 1

We've had a lot going on the past couple of weeks.  So much so that I think this will have to be a part one and part 2 blog post.  Let me start by explaining how the "trial went".  I go into detail so it may get boring at times.  I just want to be able to look back and remember it all someday.

We've known this trial has been coming for almost 2 years now.  Which has given me plenty of time to spin all sorts of horrible scenarios out in my mind.  The whole investigation was so slanted every word I said getting twisted that I expected no less from this so called fair hearing.  I have literally been having many sleepless nights over this, always envisioning the worst.  We didnt know what to expect so my vision always included a large courtroom with a judge in a black robe and me on the witness stand trying to defend myself.  Every website we had visited basically said dont even bother to go to the trial if you dont have legal representation or you'll lose.  Those are very bad odds.   What could we do though I need to clear my name, and there is just no money to pay for a lawyer.  So we went into this as some might see it unprepared with just our records and the truth on our side. 

I had also read all of DCF's records against me, and they made me sound so ignorant, and twisted my words or outright lied.  An example of this is that I decided to homeschool Kaylie because the pregnancy rate in Athol was extremely high and I was afraid our 5 yr old would get pregnant!  Umm hello I never said that.  I actually said that because of the teen pregnancy rate she would be attending school with children of children and I was more concerned about the influences these other children were exposed to.  Needless to say I was afraid my words would get twisted again.

My vision of a large courtroom with a judge in black robes couldnt have been further from the truth.  First off we met at the DCF building and just had a small room with a table set up in it.  There were 2 DCF social workers defending their case against me, a judge (unbiased) Kevin, my mom and I.  We did all get sworn in and there was a tape recorder recording everything.  DCF presented there case againt us.  Which was basically that I left my child unattended on the couch and she was injured, that I let her sleep with a blanket over her face, and that we were supposedly told by the VNA nurse who used to come out to the house that ANYTIME Alexa had any apnea spells we were supposed to call 911 and have her taken by ambulance to the hospital.  Also they said there was a discrepency with me saying I made an apointment for her to be seen by her pediatrician the following day, and that I didnt.

The judge looked over at me and asked if I had anything to say.  I started to talk and it was as if all words had left me.  In place was this panicked feeling, and I couldnt get anything out.  I apologized and the judge said that it was ok and there was nothing to get nervous about we were just discussing things.  That seemed to snap me out of it and I looked over at her and calmy said "no, this is my life we're talking about".   And then I started...  I said first off I believe there are many discrepencies in the charges you brought against me.  While you were doing your investigation I always answered the how she got injured.  We never even discussed the why.  Why was she left on the couch "unattended".  I can answer that for you simply.  At the time of the incident Alexa was 3 1/2 months old.  She was very dependent on me, so much so that she never slept unless I was holding her.  The doctors suggested that I try to wean her off of that as best I could as that would give us a multitude of other problems down the road.  They suggested that I hold her and gradually put her down as she fall alseep.  Until my body lost contact with her.  For any of you who have been through this weaning you know what it's like.  Now as a parent we are always looking out for the best interest of our children, but a a parent of a child with multiple medical problems our focus may be a little different.  My goal everyday is what causes the least harm.  Leaving my child who did not roll nor start to roll until she was 13 months old on a big overstuffed chair so she can sleep independently outweighed the posible risk of my child being injured.  Also she was connected to both her apnea monitor and her feeding pump which is connected to an IV pole, if I had even attempted to transfer her with all of her equipment she would have been up in an instant. 

Secondly I never told anyone I made an apointment with her pediatrician about this incident.  I said I thought I had mentioned it to one of her doctors, but that I saw so many and talked to so many different people I wasnt sure.  Reguardless I did take her to the ER anytime I thought there was any issue with her and have never not taken her in to get treated when there was something that was wrong.  If I had taken her in that day they wouldnt have seen anything as these fractures take a couple of weeks to show up.  We had taken her a week after the incident to get chest xrays to check for pneumonia and nothing showed up then. 

At this point the social workers for DCF said well why didnt you get her seen if you thought there was something wrong with her.  We hear from everyone that your hypervigiliant about everything else why not this major incident.

All I can say is that after a few minutes Alexa stopped crying.  I checked her over and she appeared fine.  I do know what to look for, and continued to monitor her.  Once we thought it was a non issue I think we just stopped thinking about it.  She had so many other more important things going on.  I will say that now I call about everything just to protect myself, but I wasnt thinking in those terms before this whole fall out from that incident. 

The social worker said that the doctors believed I was very stressed and that the baby would be safe to go home with me only if I had someone with me ie Kevin. 

I responded that yes at the time I was extremely stressed, and at the time possibly hysterical.  I said but wouldnt any good mother be stressed or hysterical if they were falsely accused of abuse and neglect and was threatened that her children were going to be taken away from her.   I said that these false accusation have brought me more stress than anything in my entire life.  It demeans every good thing I have done for my kids.  This has turned our lives upside down like no illness ever could, become it isnt necessary.

The social worker said that we never falsely accused you.  We dropped the charge of abuse, because if we had any question to whether or not you abused your kids, you would not have them.  You admitted that this was all your fault.  You said you were guilty.

I said it was my fault, and I was guilty of an accident.  I was not guilty of neglect.  I'm the least neglectful mother you'll meet.  I'm almost completely the opposite almost annoyingly so.  I did go on to give examples, but dont want to list them here.

At this time the judge looked over at the social workers and said if this is your whole case I believe you've been unduly prejudiced to this mother.  She said I too have read this case in its entirety and right here one of the doctors says that because Alexa is on an apnea monitor she is safe to sleep with a blanket over her face as it soothes and comforts her.  So that cancels that out.  There is the concern about not calling 911 however.

At which time I said.  After speaking to this VNA nurse myself she told me that she was asked a very leading question.  "Wouldnt you be surprised to hear this family drove from Athol to Boston with a baby who wasnt breathing?"  Which she responded I told them to call 911 if the baby wasnt breathing.  Well duh! (I didnt say that by the way) Alexa was stable at the time we drove to the hospital.  After speaking with her pulmonologist first (lung doctor) who told us to drive to the hospital with one of us in the backseat.  Which I did.  Maybe we should have gone to the nearest hospital to my parents but that hospital is notoriously bad, and the next nearest hospital was Boston Children's hospital.  We were in the middle of transferring most of her care over there anyway.  We do have records of the phone call to the doctor.  I told them that we are trained on how to respond to Alexa's apnea, and if we called 911 everytime she had an incident she'd be having ambulance rides every day!  Would it be wise to bring my already scared baby over to one hospital only to be transferred to another one after an exhausting day of being poked and prodded to repeat the whole thing at a new place with new people.  I opted to drive where we felt was safest. 

A lot of this may be out of order as I dont remember everything clearly.  I did tear up a few times, claiming my love for my children.  How they are my world, and I would do anything for them.  How I've done everything in my power to make Alexa's life better.  How I have fought for every diagnosis we have, and continue to battle the unknown.  Kevin said a few things and my mom said a few things.  I spoke about how my dream was to always work with "cancer kids" and that by having my name on that registry that it basically kills that dream.  And its unfair to me and to the kids and their families I could help.  The judge seemed to like that. 

The judge did say at one point I believe this was an accident and she should not be punished her entire life because of an accident. 

The 2 social workers really didnt have much else to say and they did wish me luck. 

I did ask the judge what it looks like might happen, and she said she couldnt discuss this outside of the trial, but we did hear her comments in there.  She told me the next step is for her to present the case along with her reccomendations out of courtesy to the branch director of DCF.  If he turns over the charges to unsupported it would only take about 5days-2 weeks, but if for some reason he didnt turn over the charges it would go to her supervior and it could take up to 6 months for them to change the verdict.  I also voiced my concern over how ignorant the dcf record made me look, and she said well I didnt get that impression and anyone can see by talking to you that you are highly intelligent and educated.

We left at that and point I was so numb.  I couldnt believe it.  I mean it sounds good for us right?  My mom treated us to lunch, and we were able to talk everything over.  I was just so emotionally drained.

On our way home from Greenfield we decided to stop at our favorite place one last time.  The  waterfall....  It was so nice going, we have so many good memories there.  We went to our favorite picnic place and just looked out over the amazing beauty, that no matter how many times I see it leaves me breatheless.  I was able to finally exhale then.  It feels like the first time I could take a deep breath without that horrible dark cloud hanging over my head in almost 2 years.  I left the waterfall feeling like a burden had been lifted. 

Nothing has been decided and I dont want to hope to much, but it looks good for us right now.   One last thing before I start part 2 of this saga.  Today we had to go to Boston for another appointment which I'll go into more detail about later.  Anyway it was the first time that I didnt feel like I was "acting" like a good mother to prove myself, but could just be a good mother because thats who I am.  I felt like I had the right to hold my head up high again.

I'm not going to post any pics right now, because I dont want to see any of my families smiling faces near this yucky experience.

say cheeeeeese!

Alexa is going to be 2 in less than a month.  It's hard to believe that 2 long years have already gone by.  She seems so little to me still my baby in every way.  I know she will always be my baby but now she's a toddler!  While preparing for this birthday I cant help thinking how many more birthdays will we have her for.  They say her prognosis is bleak and that we'll be lucky if she sees her 6th birthday, but I cant help thinking she's going to prove them all wrong.  This year we are doing a farm party as Alexa LOVES animals, especially horses.  I've been making all the party decorations by hand to save money, and it makes me feel good like I'm closer to her somehow, it's just more personal I guess. Next week Kaylie and I are going to try to make a pinata. this could be a big fail, let's see how that turns out...

Alexa has had quite a busy week.  On Sunday we went to the zoo with my cousin's wonderful family and my sister and Kira.  The kids all dressed up in their halloween costumes and went trick or treating at the zoo.  This was a huge hit for Alexa.  She loves animals so much.  Last week we really brushed up on all our animal signs and she was able to sign a lot of the animals, not all but who really knows what an audad is anyway?  We made it just in time to see the Elephants stomp.  Apparently elephants really love pumpkins and there was a whole bunch hidden all over the place.  They would find the pumpkin and then crush it somehow.  Alexa loved this.  She's been signing elephant all week to everyone she sees.  Alexa's favorite animal at the zoo was ready for this...  a chicken!  She thought the chicken at the little petting area was hilarious.  It was so nice to see her so happy.  Thse are the moments I treasure most. 

I wish I could say the rest of our week was as wonderful as Sunday.  On Saturday night Alexa started having cold symptoms.  For her a cold is devestating.  She is up all night needing lots and lots of suctioning.  For those of you who have never seen suctioning completed before lets just say nasty, and leave it at that.  She has been so uncomfortable and breathing is more of a struggle, especially when she is lying down and cant seem to get all the junk up.  On Monday night she was especially fussy it seemed like I couldnt find anyway to comfort her.  Eventually I medicated her and then let her cry for a while.  Turns out she was in a lot of pain, as her eardrum ruptured that night.  I realized this the next day when I saw some nasty stuff stuck in her hair and upon closer inspection realized her ear was full of pus, blood and drainage.  Poor baby.  After talking to her ENT doc they said she needed to be seen and if it were a ruptured ear drum then we would need to put tubes in her ears.  Just another surgery to add to her list.  We went to the ER and of course they diagnosed her and put her on antibiotics yet again.  Meanwhile her cold just seems to be getting worse.  If it doesnt clear up by next week we'll take her in to get x-rayed since she is such a high risk for pneumonia.  I'm hoping that since she's already on antibiotics that maybe that will help clear any other infection that might try to take advantage of her weakened state. 

Alexa and sweet Isabella

Monday was a busy day for us as well as we had to drive to Springfield for 3 appoinments.  Good news her cardiologist says her heart defect hasnt gotten any worse, and that we just continue monitoring it.  Pulmonolgy wants to do yet another sleep study.  Will they give that a rest already?  I think we're up to 5 sleep studies and countless other tests that dont really seem to tell us anything.  Needless to say little love was very tired when we got home and then we had to get dressed in their costumes and head over to Meme and Poppy's for dinner with the cousins.  It's so nice seeing them all together (Kaylie, Alexa, Ella, and Kira) between them we had Princess Belle, a bumblebee, fairy and a peacock, respectively, so very cute.   They were so cute trick or treating.  Alexa would just let the older kids say trick or treat holding her little bucket out, and when she got her candy she would sign thank you.   It was a very nice night.

In between all this action we had early interventions come 4 times to our house.  Kaylie was sick with a terrible cold, and we had to continue with her school.  Thankfully I'm only getting cold symptoms now, and Kevin is here to help. 

Alexa loves to push Gabe (our cat) around in the stroller

Kevin starts his new job next week.  I cant believe he'll be home like a normal person.  He'll be working the 3-1130 shift, but it'll be nice having him come home to us at the end of the night.  The IRS is kind of frustrating as it left us to the last minute before we had any real details.  Like when his start date was what shift he was on and so on.  We were under the impression that he would be training on first shift, but apparently that is on second shift as well.  We had just set up the family sign classes for Wed evenings that day, and I had to email them right back and switch our schedule completely around.  How embarassing.  Apparently we'll be recieving 20 2 hour class sessions.  Hopefully I'll be able to really pick up a lot and be able to communicate much more freely with Alexa so we can teach her.

Yesterday was my birthday and Kev and I went on a date!  With no kids...  This is only the 3rd time we have been away from Alexa since she was born, and it was so nice.  We went out for Tai food, and even did a little shopping.  I was able to get my hair cut, which may seem small but it has been over a year since i did that.  Alexa was very concerned as to where all my hair went when she saw me.  She kept touching it and babbling, then she just started laughing.  What a silly kid.