Story time

Supergirl just chillin after rescuing the world

A few cute stories about Alexa to start this off on a good note.  Alexa is starting to understand things better.  We've gotten a bit better at signing.  Not great yet, but our signing classes dont start till next week, so everything we know is self taught.  A wonderful teaching tool is the signing time videos if you want to pick some of the language up or teach your little ones.  Anyway because Alexa isnt completely deaf it's like she hears things as if she were underwater, she is able to pick up sound patterns.  They're just very muffled, but she knows the sound of her name, and other things we commonly say.  So she is able to respond to simlple things.  One of her naptime/ bedtime rituals is to make sure she gives everyone including the animals a kiss.  So you'll often find us searching them all out (let me tell you trying to find a cat when they dont want to be found can be very difficult), but if she doesnt kiss everyone that is in the house she gets very upset and will continue to do the kissy face until everyone gets one.  She hates when the dogs give her kisses (licking).  So I explained that this is how dogs kiss (talking and miming), she seemed to understand me.  That night when she went to give Sunny our golden retriever a kiss she licked him right on the nose!  So gross!!!  I've  been able to get her to stop for the most part by acting all grossed out, but everyone once and a while she slips in a lick.  Very funny...

I've been trying to teach Alexa animal sounds and although she cant hear them great she's able to get some of the sound patterns right.  An example would be I say and sign cow, and she oooo's like a moo, or sign cat and she e-ows like a cat, sheep is an aaa, and so on.  Well I decided to throw a few extra "animal sounds" in there.  Like I say and sign red sox and she throws her arms up in the air and says "ooooh-oooh!"  for woo-hoo!, and I sign yankees and she says "in" which equals stink.  We like to teach our Red sox fans young.  lol

So we've been trying to fatten Alexa up.  She's down to 20 lbs meaning she's still losing and not maintaining her weight anymore.  We're at her tolerance level with her feeds (if we go over that she cant digest properly and has uncontrollable vomitting, and  it messes her up the other end as well).  So we're trying to increase her caloric intake by mouth, very hard to do when her tiny belly cant's hold more than about a tablespoon at a time.  Kevin recently found out she loves reeces pieces, and she got a few boxes in her stocking.  They're great for her because of the fatty peanut butter and small portion size.  Also its one of the few things she'll eat.  Anyway I was giving her and my niece some today and I told them that when they were done with the amount I gave them they could have more.  Kira got it right away and started shoveling them all in her mouth.  lol.  Alexa watched and when she saw that Kira got more when she was done she tried to be sneaky.  She took the 5 pieces she already had and because she wouldnt be able to handle them all in her mouth she decided to hide them.  I didnt realize until I caught her a while later asking for more and hurrying over to her little tool bench to "save" them for later.  Little stinker I was so happy she was eating so well, turns out she was just stashing them so Kira wouldnt get them all.  Arent babies so funny!

Also because Alexa has been so clingy lately it is really difficult to get anything done around the house.  We used to have the moby wrap, but I boxed that up with her baby things thinking she had outgrown it.  Today I was so desperate I got a sheet and tied that around myself to hold Ali so that I could get a few things done around the house.  I carried her like that for about 2 hours, and it worked great, I guess I'll have to dig up the moby wrap again.

Just a little slice of our Alexa.  As you can see she has a spunky, sweet personality.  That's all for now, I'll write more when I can express things better.

birthday and blues

 Can you believe Alexa Belle is now two?  I can still remember perfectly the anticipation of her. Knowing I was going to have a c-section and meeting our beautiful girl.  I couldnt wait... It had seemed like we had waited a lifetime to meet her.  I remember Kevin and I saying that she really must be the most wanted baby ever.  Not that each and every baby isnt amazing in their own way.  It was just we had waited for her for over five years.  Having countless losses and hoping each month that our amazing baby would be realized that month.   Sometimes I wonder if that time helped prepare us for Alexa?  I loved every moment of being pregnant even the bad times because that just proved to me more that this was a reality, and we were going to have our baby.  Dont get me wrong, losing her twin was a terrible experience, so bittersweet knowing one of our babies wasnt going to make it, but still knowing I had to be strong to keep our other wonder strong. 

Alexa came to us and all I can say is that it almost felt unreal.  She was a dream realized.  I know that I wanted everything to be special.  Every moment every breath means something.  I think that the mindset I had has made everything else a bit easier.  The day she was born I was in complete awe.  How did I deserve her, this perfect little baby?  Yet here she was so amazing and perfect.  We didnt know there was anything wrong with her.  I mean we did know about her heart defect, but that seemed manageable.  I remember thinking that I have to remember and cherish each and every moment beacause this may be my last baby and she was so precious.  So thats what I did.   I'm so thankful for those 6 weeks of worry free perfectness.  I can truly say that this time was pure bliss for our family.

It's so hard to put into words how we feel about Alexa, but can I just say how unbelievably blessed we are to have her in our lives.  No this isnt the life I would have chosen nor expected for her.  However Alexa is perfect I couldnt ask for a better kid.  Yes. I wish she was never sick and I would die if it would mean she would never have to experience pain again, but I wouldnt change anything else about her.  We have this perfect little girl and we were prepared to cherish every moment of her life.  So thats what we are doing.  To think the doctors think she may be done with a third of her life.  I feel like it's just begun...

We had Alexa's birthday party last week.  I wanted to make it great.  I did all the decorations myself and even made the cake.  I think it came out pretty good...  We played our DVD of Alexa's last year, had everyone do Happy Birthday to you in sign, and attempted to play party games with a bunch of two year olds.  It couldnt of been better.  Thank you to everyone who came out to make Alexa's day special.  We loved seeing you all there. 

Also a special call out to all my December mommies and babies.  You guys have been with us through our entire journey and we are so thankful to have you in our lives.  I hope to be able to meet up with all of you at some point in our babies lives, you guys mean so much to us.  Happy birthday to all those special babies too.  I hope to get all the kids on facebook when their birthdays come, but I havent been going on much these days and dont want to miss anyone. 

The last couple of weeks have been so jammed packed with activities and appoinments.  Being closer to family has allowed us to do so much more.  It's been great.  We saw my cousin Nate's band play (Old Hundred) what a talented bunch of guys, they are so good!  If you get a chance you should check them out.  We had my cousin Jennifer's 2 children spend the night with us after Ali's party the kids had a blast!  The next day we all got together and went to the zoo to visit with santa.  This weekend we had a family reunion and Kaylie was in her glory because there were other kids, dancing, games and santa!! 

It hasnt all been fun and games those are just the highlights.  We've had a couple of important appointments with Alexa.  We saw her GI specialist.  Her dysmotility appears to be getting worse.  She seems like she is in constant pain especially at night.  It is so hard to find a balance with her meds, because if I give her too much fiber she has diarrhea, not enough and she's painfully constipated which means we have to give her more of her stool softener.  Meanwhile she hasnt been eating much at all, and is waking up most nights in excrutiating pain.  Meaning many sleepless nights for all.  Often times her belly gets so distended that her tube starts leaking bile at the site.  This burns her skin and makes it break down causing a lot of pain as well.    We're trying to find something to help ease her pain at night better than the tylenol and Ibuprofin we've been using.  

We also saw her neuromuscular doctor.  Her reflexes are almost non existent now ( i dont know exactly what this means)  I think it means that she is becomming weaker and her muscular disease is progresssing.  Also they noticed that her pupils werent dilating properly.  This means she may not be processing light properly...  We have to get her vision checked out again.  I just wish there would be one thing that worked perfectly.    The doctor wanted to schedule her lumber puncture, but we're trying to get everything scheduled together.  Her tubes snipping her frenulum, and another GI test. 

Most of this was written a few weeks ago.  I havent felt much like writing.  

Alexa had another ruptured ear drum.  Poor baby.  Meaning another trip to the ER just to get antibiotics.  We really need to get a new local pediatrician...  This pushes her tube placement back, as they need to wait until she heals before placing her tubes.  It seems like when she gets an infection or has anything more than her now baseline cold her body starts declining.  She's been so fatigued lately not doing much of anything.  Her nights have become a series of suctioning, vomitting, pain, and alarming (alarms going off every couple of minutes).   It makes me so sad to see her this way.  We do get blessed with some extra bursts of energy once in a while.  I love when we get those.  It seems like when she sees her cousins or family and friends she's able to do a bit better.  Although, not so much for her early intervention therapy appointments.  Although she has those nearly everyday. 

Things have been a bit tough lately.  I wish I could say that I'm able to brush everything off and stay positive, but I think I'm failing at that.  I try not to let Alexa see... Some days are a big fail.  I wish I could be strong all the time.

I'm having a hard time writing about whats going on so for now I'm going to just post what I have.  I did plan to write a bit more but words seem to be escaping me right now.  I hope you all had a wonderful Christmas. 

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.

court date looming

It seems that part of the reason I've been neglecting to write as often may have something to do with my emotional state.  Since moving here I do have to say that I have been dealing with a lot of depression and anxiety.  For many reasons...  and because of that I havent wanted to write because I promised myself I would be completely truthful when I started this blog, and knew that I couldnt be before.

The new move was supposed to fix everything... Of course that isnt how it worked.  I seldom see my husband and the girls miss their daddy.  I dont like being a single mom which is essentially what I am right now, but on top of that we're stuck in this house and its starting to feel like a prison.  Sometimes the only adults I talk to are Alexa's doctors and her early interventions team.  Also a week before we moved I found out I was pregnant.  I was very excited but didnt want to tell anyone about it because of past issues.  I dont know if it was because of the stress of the move or what but I miscarried 2 weeks after we moved in.  It took a long time for my body to reject the pregnancy completely.  At which time its like you're in limbo.  The tests keep coming back positive but your bleeding and then that stops so you have hope and then it all starts up again.  We weren't trying to have another baby at this time, but as soon as we thought we were, we were so excited, planning, looking at names, imagining our lives with another little joy.  It was a devestating loss, they dont seem to get any easier.  It's taken me this long to be able to talk about it. 

The other huge issue going on right now is that we finally have a court date set for the dcf hearing so we can fight the charge of neglect against me.  This has taken me back to a really negative place.  I cant get it out of my head, I'm losing lots of sleep over this.  The entire thing feels so unfair!  We cant afford a lawyer so we're battling it out on our own.  I'm bringing all of Alexa's discharge summary's all her doctor notes.  Documentation of all her diagnosis, and a list of all the medical professionals so the court can see exactly what we do do for our daughter.  Which is to help her survive.  How do we prove to these people that they never had a case to begin with?  How do we get our life back?  No they are not involved in our lives anymore, but the charge is still there my name is on a registry with others who HAVE abused or neglected their children.  I would do anything for my girls, anything!  I feel that this taints my name and all the goodness that I have done for my kids.  Alexa's illness has been unbelievably hard, but its something that just is and we are able to live with it because we have to.  This DCF charge is fabricated and unjust and someone elses doing and does not have to be a part of our lives.  My daughter is alive because I fight for her, but it feels like that is overshadowed by this taint they brought into my life.  I dont want to say anymore right now because it just gets me all upset and anxious and I'm trying to avoid that right now. 

No matter what goes on we still have our family.  I always take comfort in knowing that despite the odds we still have the best loving family.  Kaylie is this great kid who just bubbles over with her joy.  You cant not be happy when she's around.  She is such a great helper with things around the house but also with her baby sister who loves her dearly.  Kaylie is Alexa's sunshine.  Alexa is developing this little personality that borders on the hilarious.  When she is feeling good she goes out of her way to play little tricks on people to make us laugh.  SHe has a sweet side and doesnt want to see anything hurt, and doles out lots of love.

Today was a great Alexa day.  She woke up happy, and then her daddy walked through the door.  She shreiked with delight and clapped her hands, and literally ran (yes I said ran) to her daddy.  Shortly after her speech therapist arrived and had a ton of fun new toys for her to play with.  Alexa had so much energy!  She was even able to make it through another appointment with the child developmentalist.  This was the first time we met with the speech therapist and she really seems to know her stuff.  Alexa even tried to immitiate her a few times without even knowing thats what she was doing.  I dont know if I ever mentioned that recently we noted that Alexa had an attatched frenulum.  That just means that the thing that connects to her gums and lip is connected to far down near her teeth.  We were afraid that this was causing some of her speech delay.  However even with this she should be able to make some sounds that she cant so it doesnt really explain everything.  Anyway by the time Alexa's early intervention appointments were done she was exhausted.  She had a VERY long nap, and was very cranky.  It dowsnt matter it was soo worth it to see how happy she was in the morning. 

Also we just found out today that Kevin got the IRS job.  Yay!  The only problem is that it is a huge pay cut.  We're barely making ends meet right now.  I dont know how we're going to manage this, but he needs to get his foot in the door...  As soon as the court date is behind us I need to actively pursue getting Alexa a home nurse so I can go back to work to help with our overwhelming bills.  I've just been having a hard time focusing on anything other than this stupid case. 

I'd like to end this on a good note since I started it all depressing.  I've now lost 22lbs since moving here.  Yay!  

Random acts of kindness

Sometimes when the world seems bleak or scary a little kindness can brighten it like a light going on in a storm.  I know I know getting all metaphorical on you.  But here's the thing I've come to realize.  No matter how bad things seem for us at times the whole world doesnt stop like it feels it should.  Everyone else keeps living their lives around us.  Sometimes I forget that. I know that seems very self involved, but it's more we get so busy surviving in our own little bubble we forget to look outside it.  Sometimes it takes just one act of kindness to bring everything into focus again.  Let me explain...

Last week Kev left for work on Sunday night and only made it down the street before he realized he had a flat tire.  So he hurried and put the spare tire on, which is not really a tire at all.  It's supposed to get you to a tire shop so you can get a new one.  However Kevin went to work across state, and worked all week.  On Thursday he made it home he had taken vacation days so we could get to Ali's MRI the following day.  Anyway that evening after he woke up he went to get a new tire put on.  He went to a local place, but apparently they had been already closed an hour.  Kevin asked if they k new of another place that might be open then as we had to drive to Boston at 4am for our daughter's appointment.  The man looked at Kevin and said "Well we cant have you go like that".  So he opened his shop even though he had already been closed an hour and was ready to go home, and changed our tire.  He didnt know us, knew nothing of our situation but still opted to help.   His kindness really touched me.  Made me look past our own struggles and open my eyes to the world going on around me.  Sometimes it's just the little things that make a difference.  I'm going to try to remember that as I go about my day to day, and maybe I'll b able to repay that kindness to others in a kind of pay it forward or backward type thing.

Throughout this entire experience we have experienced more kindness and generousity than we can count.  From big things  to simple things like an I'm thinking of you email.  We are so appreciative to it all.  Sometimes I have a hard time accepting things or knowing how to say thank you, but I'm working on that.  So thank you again to all who have made this experience a little easier. 

Alexa had her MRI on Friday.  Although we've done it many many times putting her under never gets any easier for her or me.  She knew as soon as she saw the nurse in her blue scrubs that she was in for a long day.  She wouldnt let anyone near her without a complete breakdown.  It took 3 people plus me to hold her down while they tried to put an IV in.  Thankfully the anasthesiologist agreed to wait until she was under to put in her IV in her overused veins.   She still came back looking like a pin cushion, but at least she was asleep through most of it.  Anyway they gave her a sedative before putting her under to calm her down.  She fought that as well, but lets just say I got a few chuckles from her goofy behavior.  At one point she started giggling like crazy pointing towards the cabinets, I dont know what she was seeing but it sure was funny.  I told everyone we saw2 that we really wanted to go home that day if possible.  They assured me theyd do everything to make that possible.  For the most part we get good nurses but once in a while we get the ones who really should look at getting a job elsewhere and not with children.  Her recovry nurse falls into that category.  He knew we wanted to go home that day, but that didnt mean I didnt want her to be safe.  When I went into recovery she was in just her diaper with no blanket on and freezing to the touch.  I immediately said she's cold and needs a blanket.  When she started waking up it was clear she needed suctioning and he refused.  Said I should just pat on the back and let her get it up on her own.  Ummm, not ok!  He explained its better if she clears her lungs on her own, not if she has a hard time doing it when she isnt all drugged up!  He just couldnt be bothered setting suction up.  I ended up clearing some of the mucus with my finger.  She was still really junky, but at least her airway was basically clear.    Then her O2  kept dropping into the 70's (supposed to stay above 90).  Instead of giving her oxygen he would just silence her alarms.  Another nurse ended up coming over and giving her the mask at one point.  Granted she would bounce back on her own but it would have been better if she had oxygen and didnt keeping dropping into the 70's.  When the anasthesiologist came to check on her the nurse reported that everything was fine.  I think the nurse just wanted to make sure she was discharged so he didnt have to go through the trouble of admitting her.  Now dont get me wrong I didnt want her admitted, but I did want her well taken care of.  Needless to say we did get discharged home that day, but I would not trust that nurse to take care of Alexa again, and if I felt she was ever in real danger would have asked to have them switched. 

Alexa responded like she usually does and was miserable for a few days.  Sleeping all the time she's up to 3 naps a day now.  She now has a terrible cold, and was up most of the night last night needing to be suctioned.  All mucussy (is that even a word?) and gross.  She's stopped taking in much by mouth as well.  Hopefully she bounces back quickly.  The MRI results are back and her brain looks good, yay!  So we've got the all clear to go ahead with the lumbar puncture.  Fun times...

Kaylie started going to kids club last week, and loves it.  Again another kindness as she gets a ride with a great family.  I would love to find more activities for her but have to wait until Kevin gets a job closer to home so I'll have access to a car.  I can tell she gets lonely for kids her own age.

I have been terrible at keeping this blog up to date lately.  Seems like our internet problems were getting better for like a day and then are bad again.  It's such a hassle to come on I just dont.  ai''m so used to keeping up with things on the internet that I've been feeling rather isolated.  The previous portion of this was written 2 weeks ago. 

We got Alexa's results from her MRI and there is no change in her brain.  Yay thats good news!  We were worried about what we may find after her having that seizure.  She has the all clear to get her lumbar puncture down now.  Alexa has been ultra cranky lately.  It seems I can never do anything right and poor thing gets so frustrated when she cant communicate clearly.  She's been regressing with her signs and kind of jumbling them all together.  I'm hoping this is just a faze.  Her schedule is all wacky right now.  We have about 3 good hours a day, the rest she's all miserable or she's sleeping.  She is usually awake for only 6 hours a day now.  That may seem like I have a lot of time off, but she is so sabsolutely needy during her time awake that I feel exhausted all the time.  She does still need me throughout the night so that might explain some of my exhaustion.  I dont mean to complain as she is not a bad kid she just has so much going on right now.  When she is feeling good she is sooo much fun, and when she smiles I know how truly blessed I am,

Kev may have a new job with the IRS we wont know for sure for a few days but he has gotten pretty far in the application process.  I guess we'll know soon enough.  I still watch Kira every Thursday and love that time with her.  She is such a funny kid.  With Alexa I sometimes forget what its like feeding a normal kid as she just has little bits of food here and there.  Kira well lets just say she eats the entire day.   She'd rather be eating than playing.   I love it because I missed out on that time with Alexa.  They are so funny together, they dont actually play with eachother but do a lot of parallel play.  Funny thing is I have both girls completely confused as to what my name truly is.  When Kira's here I refer to myself as auntie Amy she calls me Ama.  Well both of my girls call me momma or mommy so Kira thinks that my name, but Alexa hears me say Amy all day.  By the end of the day she is usually calling me Mamey.  lol. 

I guess thats it for now, but I really will try to update more often.

New beginnings...

So it's been a while since I've had time and access to the internet to write.  Our internet has been real spotty since getting it, hopefully it starts working better soon. 

So we've moved into our new house (rental).  Moving is so much work... So glad thats done, although I do still have 2 boxes to unpack, but I keep putting it off.  It's just old stuff and paperwork so very boring to go through.  The move has been good for us for several reasons, but is also more difficult for others.  Let me clarify.  We love being closer to everyone, and seeing family and friends.  I've been watching Kira on Thursdays and I cherish that time with her and my girls.  We've also been able to see more of Ella and hopefully she'll be able to come and spend some time with us as well.  The girls love being with their cousins.  Alexa seems to do so well when she is with them.  Maybe she just gets more motivated or has an extra adrenaline push or something but she has been much improved as of late.  Still more week than usual very low stamina and requiring more sleep, but she started taking things by mouth again.  She's so happy. 

The girls have come up with a new tradition and that is dance party before bed.  Kaylie puts in one of her cd's then everyone dances till they cant dance no more.  The girls loooove it!  Our neighbors probably think we're crazy, but its fun, and I love seeing the girls so happy even if I do have to listen to Hannah Montanna...  Alexa now request dance time by sign a few times a day.  She gets so much joy from music and dancing.  Sometimes she's to tired to do it herself so I just hold her and dance with her and the joy on her face is something I treasure.

Unfortunately Kevin has been staying at the old house during the week so he can commute to work.  He worked 80 hours last week.  We only got to see him for 1 day.  I sure hope he finds a job around here soon.  Kev has been taking the car so I'm left without one which is so difficult.  I never realized how much I relied on my vehicle until I didnt have one.  SImple things like running to the post office or picking up milk has become so much more dificult.  I also miss my best friend.  He lost his phone a few weeks ago so I havent even been able to talk to him. So even though we are closer to everyone we love I still feel lonely. 

Alexa seems to be strengthening everyday.  She is dealing with a cold right now but it isnt hitting her as hard as it could be.  She still fights high fevers almost daily, and her heart rate has been very sporadic going as low as 40-50 which is very low for a baby.  It seems like she is getting stronger with that as she is not setting off her alarms as frequently.  She was getting to the point where she was setting her monitor off every 30 secs to a minute.  She now sleeps in my room so I can respond more quickly to her alarms.  It helps not having to run to her room every time.  However Ive started incorporating her alarm into my dreams.  She sees the new cardiologist soon he's the one who specializes in autonomic disorders.  Hopefully that will give us some answers even if they are not the ones we want to hear.

We saw her GI doc recently and Ali had lost 2 lbs in 1 month he was very concerned and upped her feeding.  He said that maybe her genetic disorders are affecting her ability to gain weight, but he's not giving up because she was able to gain weight in the beginning. 

Alexa has her brain MRI on Friday.  She'll be going under for the procedure and because of that she'll need to spend the night in the ICU.  I'm hoping they let us go home the same day.  When I asked the nurse if that would be at all possible.  She said it depends on how she wakes up and that maybe if there are no issues she may be able to go home same day.  Pray for that, because Alexa does poorly when she has to stay in the hospital.  We decided to go ahead with the lumbar puncture (spinal tap) as the doctor feels like he might be able to tell a lot from it. 

I have not uncovered my camera charger which really stinks I guess I'll have to buy another, like we have the money for that...  But I hate not being able to capture all Alexa's moments.  When I do I'll be sure to post some new pics.  Alexa has grown a lot of hair and it is coming out in golden ringlets.  When she stands in the light she looks like an angel with a halo behind her.  Very cute but I'm havinga hard time learning how to deal with curly hair.  Apparently brushing it dry, NOT a good idea!  So if anyone has any good tips to deal with curly hair, please let me know as I'm getting a bit desperate.

I will try to post more frequently now that things are a little less hectic.

Packing up and saying goodbye...

This was written almost 2 weeks ago.  We're now moved in, but are just getting internet now.  Will update soon. 

Since we've gotten home we have been so busy trying to pack up for our move this coming Saturday.  It felt so wrong unpacking from our wonderful week only to have to wash everything and then repack it all.  How depressing is that...  It seems like I got hit with the flu or something , because I've had stomach upset since Saturday, and have been so fatigued.  Could this not have come at a worse time.  Try packing when every time you stand up you feel like you're either going to vomit or pass out.  This will hopefully pass soon.  It's so funny how literally kids take things because Kaylie must have heard Kevin and I talking about my flu.  Tonight she came in and says to me it's to bad that thing flu into you and made you sick. lol  I love my kid's take on things.

The flu has passed, but I think the emotional roller coaster we've been on in the last couple of weeks has finally caught up to me.  I'm still very fatigued, but I think it comes more from an overall depression.  Alexa seems to be doing better in most ways although still very weak, and this should make me happy right...?  I am very happy to see her doing better, but there's something that is holding me back.  I feel deflated.  Seeing her so close to completely giving up, to having to say goodbye...  I cry when I should be happy she's here.  Everything feels so overwhelming, sometimes I feel so weak like I cant  manage my own feelings anymore.  How am I going to stay strong for my family, for my beautiful little girl?  I have to stay strong, she can never see me give in, because I cant let her ever give in.  This probably all sounds very jumbled and confusing, I'm trying to make sense of all the chaos in my brain right now.

Ive been writing this in parts over the last couple of days whenever I get a chance to sit and think.  So if I seem like the flow of moods are out of whack its because each day I have some new perspective.  Things seem a little better today... I was able to force myelf to do normal everday things.  So silly I know, but I've been slipping back to that dark place, where I dont want to do anything, so this is a good step.  Also I really needed to get some things done today as we're packing up tomorrow and leaving the next day.   I did take the girls to the pottery painting place again today.  We had to finish up some stuff we had started, and that was a nice activity.  I find that its really soothing and relaxing.  I'll have to find something like that once we move.  I was able to talk to my sister tonight and that sort of helped with all the hopelessness I've been feeling.  Sometimes you just need to get it out, even if it doesnt always make sense or come out the way you want it to.  But after our talk I was able to feel better about things. 

One day at a time, one moment at a time...  Appreciate everything and take nothing for granted.  The way she wrinkles her nose when she laughs, the way she points to me before crying whenever shes scared or hurt, the way her blonde curls bounce in the sunlight, her smell, and even her different cries, how she dances to music but stops as soon as she catches us watching her.  The little things that make Alexa her are what I treasure most.  I love that she has so much spirit.  I hate that when we cuddle I can feel her bones and how floppy/ weak she's become.  But I love that she'll turn around and give me a dazzling smile like I'm the best thing ever.  She started saying her first official word "momma".  How sweet is that.  I know she knows what it means because she'll look right at me and you can see her really trying to put her mouth correctly and get it out.  The funny thing is thats the only time I here the mmmm sound.  So I feel extra special that she says it for me. 

I'm trying to not focus so much on what our future may be but the now.  It's just so hard.  Especially at night when all the doubt I'm able to push away during our busy days comes crashing back.  It doesnt help that night time is Alexa's worst time.  She is still having apnea spiking random high fevers, and having a really hard time regulating her HR.  We know this because her monitor is constantly going off when her HR drops.  The scary thing about that is usually when her HR drops her O2 drops.  At least thats the case when she's in hospital and she has her pulse oximeter on.  We have one ordered for here but just havent been able to afford it, but I guess we'll have to find room in the budget to rent one, because it looks like she's really starting to need it.  She is able to move much better, but is still very much weakened.  I dont know if she'll get back what she lost, but her stamina is so low now.  She needs a lot of assistance to get up from the floor, and is only able to walk very short distances before sitting.  Also she's been sleeping about 20-22 hours a day.  She needs the sleep, and is miserable without it, but it does make things difficult.

Alexa's neuromuscular doc wants to run some more tests... surprise, surprise.  He would like to get an updated brain MRI which would be fine accept Alexa needs to be put under and everytime they do that we spend a nice night in the ICU because she doesnt do well with anasthesia.  He would also like to do a lumbar punctar.  Kevin is completely against this, and I get where he is coming from.  When is enough enough?  We have to weigh the good vs the bad of the whole picture.  The lumbar punctar might be able to rule out an infection of some sort, but putting Alexa through anther scary painful procedure just seems wrong.  Especially if there is little chance they will find anything out.  This is all very rational to me, and I definately dont want to do things that would traumatize our special girl, but this scares me as well.  I feel like we cant stop looking until we have answers.  I realize that we probably arent going to have a magic cure or anything, but I'd just like to have a better understanding of things.  The not knowing is killing me.

Old fears, new fears... New hope

So much has happened since I was last able to write.  I'll start at where I left off, and try to catch up with everything.  However I do want to mention quickly for those of you have left comments or emailed me saying you tried to leave a comment but couldnt...  I am not very good with this IT stuff, and cant figure out how to make leaving comments easier.  I havent been able to respond to them lately either, and its my own blog!  So please dont think I'm ignoring you.  I appreciate all the words of encouragement I have recieved, it really means a lot to me. 

Last week I left off feeling really grim, and questioning whether Alexa had a seizure.  The following day we were on our way to Childrens to get Alexa's dreadful tube changed, when I got a call back from her neuromuscular doc.  Who insisted we take her into the ER immediately and to skip the appointment.  Fortunately the ER staff made it possible for us to go to her appointment so we wouldnt miss it.  (So hard to get last minute).  Alexa was less than pleased.  After a complete day wasted in the ER we were sent home with a diastat kit for more seizures.  Alexa and Kaylie were both exhausted and we didnt get home till almost 10pm, no fun!  The docs would have liked us to stay so they could monitor her...  ummm...  I can do that.  Anyway we had a follow up with Alexa's neuromuscular doc that coming Monday.

I have to say that around this time Alexa started taking a turn for the worse.  Her fevers kept spiking to unbelievable highs, with no reason, and sometimes the meds wouldnt even bring them down.  She started getting soo weak.  Not being able to stand at all and just laying there.  She would just limply point her little finger to what she wanted.  Either me or her bean bag chair, and limply laid there.  At this point we thought we were losing her.  It felt as though she were just fading away in front of me, her little spark of life gone.  What can we do to make her better?  We dont even completely understand whats wrong.  How can I make her more comfortable?  How do we say goodbye?  I dont want this, I want her to continue being the miracle she is.  I need her to show me through her own fight how great life really is. 

On Saturday we got some great news.  A spot in the dream day camp had become available, yay!  We just had to pack up and leave the next day.  Now that was stressful!  You may be thinking why would we add this when things seem so uncertain with Alexa.  The only thing I can say is that the entire family needed this, and that we would do the same for Alexa there that we were doing at home.   We just needed to be doing something, and if at anytime she seemed to be doing worse we were ready to take her home or to the hospital. 

I would love to say that we got to the camp and everything was instantly better.  However thats not how this story goes.  We got to the camp on Sunday evening, Alexa had a temp of 103.5 and the tylenol and IBuprofin were not touching it.  After a long night I left for Boston Children's early Monday morning (5am, didnt get there till 9am), where Alexa had an EEG.  Which showed that yes it did appear she had a seizure.  We didnt have Ali's appointment till late afternoon so I spent the day walking the streets of Boston.  Literally everytime I stopped she would start getting fussy again. This is so embarassing but I got so lost I had to call Kevin to help me find my way back.  Then I got the bright idea to go shopping in Best buy and I got a great deal on a printer that we so desperately need for $20.  Umm... great idea Amy,  now I just had to find a way to get the thing back to our car over a mile away.  So off I go with a big old box on top of the stroller.  I couldnt even see in front of me.  What a picture that mustve made.  Did I mention that it started to downpour halfway back...  Anyway after that I decided to keep my wondering to inside the hospital.  Alexa was so off, I barely heard a peep, and she couldnt even lift her head. 

She spiked another fever just before we were to be seen and I had already dosed her with her meds.  She lost weight since the Thursday before, and she just looked awful.  I remember looking at her doc at one point and begging him to tell me what to do.  He didnt have an answer other than we will keep on looking.  I tearfully told him that I felt like we were losing her, and he wasnt able to reassure me like I so desperately wanted him to do.  He said that he was so sad to see her so out of it, last time she seemed so perky.  It just seemed like all the fight just left her.    We decided not to start Alexa on any antiseizure meds as it would most likely tire her out.  Our hope is that this was a one time thing.  If it happnes again we have her diastat kit, and the understanding that she will have to start meds.  He also didnt think Alexa was stable enough to be at the camp. 

What could I do, I still had to pick Kaylie and Kevin up.  So we decided to take it hour by hour.  If at anytime we needed to leave we would.  We stayed at the camp all week, and although Alexa continues to spike these fevers, and have apnea at night.  We slowly started seeing a little more life in her.  Yesterday she had her best day in a really long time. 

The camp is soo laid back, but perfect for us families that are constantly dealing with doctors appoinment, paperwork, insurance, medical supplies, early interventions, ect.  They have tons of activities that are planned, if you're up for it great, if not thats ok too.  This was perfect for us, because I would send Kaylie and Kevin off to an activity while Alexa slept, and I was able to get some peaceful reading in.  I havent been able to read in so long.  (Thanks Heather for the books you're letting me borrow, I finally finished one and just started a new one).   Kaylie made a great friend, Kevin loved the fishing and turtle catching, we all made tye dyed tank tops and became the tye dye family (so corny, I know).  My favorite part was the beach it was gorgeous.  Alexa had the best time at the play/musical we went to yesterday.  She was even dancing in the aisles!  You have to understand this is the most movement we've seen in a long time, and she was so happy.  I was starting to think we wouldnt see her smile ever again.  After a nice nap she was able to go to the beach play in the sand and look for crabs in the water.  She even tried some ice cream afterwards (first thing she put in her mouth in over a week).  We all so desperately needed the joy this day was able to bring us.  We have our Alexa back.  Yes she is weaker and is doing worse in so many ways, but we got her smile back, and hopefully her will to keep fighting. 

This week came at the perfect time.  We all so needed to be together and able to relax and have fun.  Alexa was able to dig in and find the energy to fight a little longer.  Along with all our old fears rose new hope that things might improve.

While you were sleeping...

I've been finding myself lately reverting back to my stalkerish days at the beginning of Alexa's life where I would just watch her sleep for hours.  Thinking she was the most exciting amazing little thing, I'd ever seen.  Not that the feelings have changed over the past 20 months it's just that things have become a little more routine.  Lately though I'm bck to breathing in every single second of her life.  I dont want to miss anything and want to treasure every moment we have with her.  I feel like the horrible past couple of weeks have opened my eyes to the fragility of her life.  I need to start preparing myself for the worse case scenario.  I know that sounds morbid, but I've been so scared since this past weekend.  I cant seem to rid my brain of the look in her eyes, when I realized she was just giving up.  It was like she just wanted it all to end, because she was so tired of fighting, and I wouldnt let her.  I look at her in her good moments and see how full of life she is, and its so decieving because it gives me that false sense of security that everything is going to be alright.  It's not...  There will be a time when I cant revive her or make her breathe.  It's not a question of if but when.  How do you prepare yourself for that?  How can I make myself accept this?  I dont want to ever have to accept this, it feels so unfair. 

We think Alexa may have had a seizure today, but arent sure.  It doesnt really make sense though because she has never had a seizure that we know of in the past.  She just lost all control of her body, and was completely unresponsive and her eyes were twitching back and forth with no focus.  Kevin who is usually so calm was panicked, and I just reacted like this was a normal every day occurance, but am very shaken now.  I keep replaying it in my mind.  Shes also had quite a few apneic episodes, and is still requiring more frequent suctioning. 

We go tomorrow to get her GJtube changed which is so traumatic for her.  Imagine being a tiny person in a world of giants, brought into a strange room with huge equipment and tons of giants in gowns and masks.  Getting strapped to this huge  table underneath this scary machine, and held down by 3 of those masked faces while they poke and prod at your already tender belly.  She probably thinks she's their next meal.  I know I would.

I was going to take the girls to the aquarium tomorrow because we're studying ocean life this week.  Alexa just wont be able to physically manage it.  She just gets so exhausted so easily these days, and we have to reserve all her energy for her nights.  I just hate that I have to disappoint Kaylie again.  I usually try not to tell her until the day of as we so frequently have to cancel plans.  But ALexa's hearing therapist was here today and I mentioned it to her, Kaylie overheard getting soooo excited.  We'll have to plan it for another time, I just dread taking Kaylie out to Boston for a long day at Childrens with that disappointment hanging over her head.  She's a good girl, but she has had to take so much disappoinmtent in her young life. 

I wrote most of this last night in the midst of her apnea spells.  With the morning light comes new perspective, and although we do feel that things have worsened it doesnt necessarily mean we will ever stop fighting and I need to keep the mindset that we will NOT lose her.  After reading back over some of my recent posts I realize that I've been sounding so negative.  I think that negative thought process  impacts greatly the way I'm feeling lately, and I need to stop worrying so much.   Alexa is still here and she is still fighting, she just had a weak moment. 

bad nights

We've been keeping real busy since getting home from the hospital, nothing to strenuous but just a lot of packing, ect.  We had a yard sale this weekend and Kaylie had her first lemonade stand ever.   She was sooo excited, and raked in $7.50, I think just enough to cover the supplies, lol.  We got rid of a lot of junk but wish we could have gotten rid of more.  We have the curbside alert with all sorts of free stuff, and the neighbors have been picking at it.  Katy and Kira came to help out, and spend some QT time with us.  That was really nice, and Alexa loves having her cousin nearby. 

Alexa has been having apnea on and off this past week, and she seems to be having more issues with maintaining a regular heartrate.  It keeps dropping real low, and slowly bouncing back.  Nothing we can really do about that, except sometimes I try to startle her a bit to get her heart going a bit faster.  We're trying to get an appointment with the autoimmune specialist,they referred us to while inpatient, but that seems to be a bit more dificult than it should be.  The secretary told me I would of had more luck just staying inpatient and having him consult on Alexa then.  Apparently she's never had a kid inpatient before.  They give you the option to leave you run with it!  Poor kid doesnt need to stay a moment longer than absolutely necessary.  Hopefully this week they'll be able to fit us in.  We also changed her formula which is a prescription that gets sent over to Alexa's medical supply company.  We have had nothing but problems with her supply company.  Not sending things when they should, having to call and check on our orders constantly, and feeling like I have to watch everything they do.  You would think that since they're dealing with medical life supporting equipment they would be a bit more professional...  No such luck.  Anyway this past week I literally spent about 4 hours total making sure we were able to get her formula.  Basically doing their jobs for them, and finally on Friday (5 days after discharge) we got our formula.  These things should not be such a hassle, we have enough on our plates.  I shouldnt have to call each of Alexa's 18 specialist 3-4 times to get an appointment.  I wish there was some way to streamline the whole process.

I think the excitement of having her cousin here and being outside in the heat today really affected our poor girl.  She must of aspirated something at some point today, because she is having a horrible night.  I moved her into our room because she's been needing suction every 15-20 min.  I feel so bad for her.  She hates being suctioned, but it gets to a point where you can see the relief in her eyes when she sees the suction coming to help her.  She just gives up trying to get her thick secretions out, its like she loses all energy to even try to expel it and lays back to let it do what it will do.  If it werent for me being right there and being able to suction her she would be dead!  That's absolutely terrifying.  I hate seeing her give up like that.  It tears me up inside because I know how much of a fighter she really is.    She also is having constant apnea, needing some vigerous stimulation.  If we hadnt just gotten discharged from the hospital I'd bring her back.  We need to be able to manage this on our own, I just get so scared that one of these times I'll be to late or unable to get her to breathe on her own.  I just dont know what more I can do to make Alexa more comfortable, and make her nights a little better..

I can tell that lately shes been getting a bit weaker.  Tonight while dealing with her secretions she had no neck control what so ever.  Also she's been having more and more frequent times where she's stumbling around.  I like to call her my little drunken bum when she gets like this.  Its like she loses all her coordination.  And she seems to be having a harder time getting herself up.  Now it's not like this all the time, but I've just been seeing it a lot more lately.  Also her ptosis (droopy eyes) have been much more significant.  I can usually tell what sort of day she'll have by the droopiness of her eyes.  So many people have commented on how tired she looks.  I've stopped explaining that she always looks like that and will sometimes just smile or say ya she's probably ready for a nap. 

We were able to do a couple of fun activities this week.  Other than follow up doctor appointments, and packing.  I took the girls to this pottery painting place, and we each made our own plates.  What a nice rainy day activity.  I was able to get a great groupon on it and it was half off.  I also recieved a 25 gift certificate to get pictures at walmart, so I took the girls in their tutu's and got pics.  We were only able to get 2 pictures I didnt realize how expensive walmart pics could be, but hey it was free for us.  The lady taking the pictures commented that the girls look so different and proceeded to ask me if they had the same father.  umm lol....  If she had seen Kevin with the girls, there would be no denying Kaylie's paternity.  Alexa...  well she doesnt really look like either of us, but she is all ours. 

Playing on her swing, I hope we have a tree to hang their favorite swings from

Kaylie and I have been studying Egypt this week.  I need to find a museum with some good Egyptian history, maybe with some mummy's and hieroglyphics or some nice ancient artifacts.  She made an awesome sugar cube pyramid.  I love doing these projects with her, and it gives us some great one on one time, which she so desperately craves.

I feel like I've been on a downward spiral lately, and I'm trying desperately not to go back to that place.  I've just been feeling sorry for myself , and I need to cut it out.  Yes, there have been many disappointments lately, but nothing we cant deal with.  I just wish I knew the future so I could see where our lives were really going.  It's so hard not knowing...  I know, I know no one really knows how their life will be, it's just that I feel like I'm always waiting for the other shoe to drop.   

The girls love their wagon!