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!

Hospital stay

Alexa is up to her old tricks again...baffling all her doctors.  We had such a busy week last week, I think maybe I just wore poor Alexa out.  On Thursday it was stifling hot, and the air was thick enough to cut.  I had a dificult time breathing nevermind already having issues.  We had a play date with Hunter and Heidi and went to a few museums for the older kids.  A very neat dinosaur museum, and then to the Eric Carle museum.  It was a great afternoon and we were able to stay cool in the AC, but Alexa did not nap.  She usually takes about 3 naps a day, and needs them to function.  She aspirated twice on her thickened water.  Once earlier in the day and then again before bed, I probably shouldnt have given her water back to her later, but it was soo hot, and she kept signing thirsty.  Anyway she was very gurgly before bed, and we did cough assist and suction which seemed to clear things up.  We put her to bed and shortly after she started having apnea spells.  Her apnea spells are funny because they get progressively worse the more she has requiring more and more stimulation.  That night in about a 2.5 hr timespan she had about 40 episodes, the last few times needing to be vigerously stimulated, and turning blue.  VERY scary. 

I had to call 911 and while I was on the phone with them she had about 5 episodes.  Kev had left for work by this time and we only have one car so we needed to ride in the ambulance (Kaylie was thrilled).  There must not be much going on in our small town because all of a sudden there was a cop car driving down the street with a big spotlight pointing at all the houses.  Way to alert the neighbors...  Anyway I had gotten Alexa up and she was completely alert at this point.  We went to the local hospital, can we just say that it is the tiniest hospital around, and probably one of the worst.  They had no clue what to do with Alexa so we were shipped off to Childrens hospital Boston yet again.  Alexa was not pleased with these circumstances to say the least.  While in the ER it was freezing and Kaylie and I had blankets wrapped around us.  Alexa was in a onesie and shivering with just her green blanket, but she absolutely refused to let the offending white hospital blanket touch her. 

Turns out Alexa had a high fever, but because I medicate her so frequently for pain I dont know how long she had it.  They did chest xrays, and it was slightly off but because there is a lag in xrays and her known aspiration they assumed it was aspiration pneumonia, and were treating it as such.  Poor baby had to be admitted to the ICP which is a step down unit from the ICU.  Basically just closer monitoring more nurses less patients...  They of course needed an IV and tried 8 different times before they gave up!  How traumatizing for my sweet baby. 

By this point Alexa was terrified of every person who came near, and decided to become invisible.  She believes that if she cant see you then you cant see her.  She drapes her green blanket over her entire body and feels safe.  Its cute because you see this green blob in the middle of her crib, and once in a while you'll see this eye peeking out.  If anyone else is in the room she quickly goes back to her hiding spot.

They looked in her ears and couldnt see what they wanted because she had soooo much waxy buildup.  They gave her ear drops to soften things and then cleaned them out.  What an awful procedure, I literally had her in a headlock with her legs pinned between mine.  I'm supposed to be protecting her and here I was holding her down and letting those villians (the doctors) torture her.  I felt awful.  She did have a slight ear infection, and the docs decided to treat it aggressively before it could get worse.  Also we met with a nutritionist and they changed her feed from the infant formula to the junior/toddler formula.  This has higher calories and other nutrients that she wasnt getting before, and it means that she can have two extra hours off her feed.  YAY! more freedom.

The doctors want to understand why her apnea appears to be getting worse lately.  We believe we're just seeing a progression of her disease.  She's been much weaker lately and has been stumbling around a lot more.   Also they noticed that she sweats so much.  The rooms are very cool, but yet Alexa is sleeping in a puddle of sweat.  So they are starting to think she might have some sort of autoimmune disorder.  She has other symptoms that point to this diagnosis as well.  Great...  just what we need another diagnosis.  We'll be meeting with a specialist soon about it.

They gave us the option today to either go home or stay another night which would inevitably be more to complete a sleep study and have a consult with the autoimmune specialist.  They would have preferred we stay, but I weighed the harm it might cause her against the possibility of maybe finding something new out, and decided enough was enough.  We can visit the specialist outpatient, and run whatever work up he wants out patient.  I just cant see traumatizing Alexa anymore than she needs to be.  I can just see the specialist wanting to run all sorts of tests while shes "inpatient" and being stuck there for a couple of weeks.

I do have to say that even though I hate being in the hospital with her this stay wasnt as bad as some of the others.  We had our own room,  privacy, an awesome view, I got some visits from some great friends...  One of which hosted my family so Kevin and Kaylie could be close by, which made the stay so much more tolerable than being all isolated in the hospital room unable to leave the floor, and it was AC so while everyone else was sweating it out, we were nice and cool.  I've been trying to put a positive spin on things how am I doing?  The doctors believe and so do Kevin and I that Alexa would benefit from an AC in her room.  So we are hoping to get one soon.  This week we have a ton of follow up appts, but we will try to take it a little more easier when we can. 

Sorry about the lack of pictures I havent been able to find my camera charger anywhere.  :(

Back slide

Isnt it funny how in one day you can go from feeling good, like life is improving overall, to completely stricken the next.   I feel as though things were getting easier, i have been able to handle my emotions better, and have been feeling so much more motivated lately.  It was like I was feeling hope again after the long dry spell of none.  Today just threw me for a loop.  We met with Alexa's case managers a few weeks ago and they evaluated her to see if she qualifies for nursing care, at the time they told me that it looks like she'll qualify for 28 hours a week of nursing care.  They have a formula based on how much skilled nursing she requires daily, if she has over 2 hours of nursing care daily then she qualifies.  Alexa definately meets those guidelines.  She needs chest PT, cough assist and suctioning at least 4 times a day and then as needed on bad days.  Each time we do this it takes at least 25 minutes, x4 thats 1 hr 40 min right there.  We also have to change her dressing every 2 hours, give her meds through her gtube at least 3 times a day never mind all the PRN pain meds we give and all the flushings, we have to maintain her jtube feeds, and finally monitor her with all her breathing difficulties.  They came back today and said that some of those things are just parental things, and they went from apporving 28 hours to none?  How is that?  I cant even hire a PCA to take care of our child because of her feeding tube alone?  In the hospital as a nurse I would do the dressing changes, tube feeds, medications, suction, cough assist, chest PT, and monitoring her breathing through out the night, not anyone else, these are all called skilled nursing interventions which I get paid to do...  I went over everything with them and they couldnt give me a reason why some of those things are parental things.  I mean feeding Alexa alone takes nearly an hour just to get her to eat a few bites, and I consider that parental although it isnt normal.  Learning and teaching her sign is parental, but again not normal.  They argued that I havent taken her to the ER in quite a while.  Well just because we've unfortunately had to learn how to manage her care 100% doesnt mean she doesnt still need nursing care.  I just opt not to go into the hospital unless absolutely necessary.  I dont want to put her through the trauma or have to stay in the hospital for weeks at a time.  They are going to review her case again, but it doesnt look good. 

On top of that I dont think we're getting to do that dream day camp this summer.  We havent heard anything back from them and the week we were supposed to go is fast approaching. It's like all these good things were happening to easily, we shouldve expected it to go all wrong.  We were all really hoping to go this year,  but if it doesnt work out there is always next year.  I just wish they would get back to me one way or the other. 

Instead of an easy tranisition with something we need we yet again have to fight for it.  I was so excited when we thought we'd get those nursing hours.   Feeling like I could have some part of a life back, and with this denial its like they just took it away.  I wish there was some way to numb these feelings until I could find some positive spin on things.  Or maybe I could ask the ride attendant if he could stop the ride, because I'm so sick of this emotional roller coaster, I just want to get off.  I feel like I'm sliding back into a dark place right now.  I just had so much hope that our lives would be improving soon.  I wish these things didnt effect me so easily, and I could be strong again.  I didnt use to be such an emotional wimp. 

Letting go

I've been very anxious lately.  I dont know if it has anything to do with everything going on right now.  I feel like there is just sooo much to get done, and am feeling very overwhelmed.  Making the other "normal" emotions intensified.  The paperwork...  I didnt realize there could be this much paperwork.  It's not the actual applications and filling out I have a problem with.  It's gathering all the information needed and having the proper people fill out what's needed and get it back to us.  There is so much extra stuff with the realtor, and mortgage company.  The dream day camp might not happen because Alexa's doctor took so long to fill out what needed to be filled out.  We'll know by next week if the slot was held for us.  I've just been so tired this week.  It doesnt help that I've had what feels like a migraine for the past 3 days.  I think its a side effect from something I'm taking. 

I've been having a difficult time letting go lately.  We're weeding through all our stuff trying to decide what to keep and what to get rid of.  I realize I have the potential to be a pack rack, because I keep things for memory sake not because it's useful.  I mean I dont really need to keep the outfit I was wearing when I met Kevin or half the other things I've kept over the years.  Its time for me to start letting go of things.  I wont remember something less because I dont have an object to hold. 

I realize that I have to also let go of the expectations I had about Alexa's life.  This is such a difficult thing to do.  Eventually we all have to let go of our children so they become who they are meant to become, but we are comforted by the thought that we did all we could to guide them on a path to happiness, and have helped them become their best.  With Alexa I feel as though I have to let go to soon.  Not in the morbid sense, but I need to let go of the preconceived ideas of her life I started having the moment we knew we were pregnant.  Alexa maybe at her best physically now, meaning she's able to walk and do things like the average kid.  She may never hear what we want her to hear or be the athlete we'd hoped.  She may not be able to jump and play and eat like others, but Alexa is who she was meant to be.  She is a little spark of life that fights for every breath she takes.  The child who beats the doctors odds and walks on her own, even if she does eventually lose the ability, she did it!  She is overcoming her communication difficulties by doing double the work of reading lips and learning sign.  How could I ever be saddened by this amazing little girl.  I'm learning to let go of the idea of the perfect life, and am going to embrace every second we have with her life, the life we were blessed with. 

On a lighter note we just got through doing a dinosaur week with Kaylie.  So much fun doing all our little projects, and watching all those great episodes on National geographic.  She really got into all of it, and you should see her diorama.  This week we are hoping to head out to a museum close by that has some dinosaur exhibits to end a great lesson.  Next week we are studying egypt. 

We were so disappointed because my parents went to pick up the bunk beds we were so excited about, and apparently there was something wrong with it.  So now we are looking all over again.  I'm sure we'll find something, but I absolutely loved the other set. 

We had the best day today at a pool party with friends.  Kaylie says to me "mommy I wish my everyday could be like this."  How sweet.  On another note in the same conversation Kaylie says  "mommy whats worse than a sunburn?"  Me:  "I dont know what?"  Kaylie:  "When someone you love gets thrown into burning lava."  Umm yes that is much worse than a sunburn.

28 hours

Its been a little while since I've been able to update.  We've been so busy lately, just not enough hours in a day.  We got Kaylie back on Sunday after a week of camping with meme and poppy.  Luckily my sister got the fun task of bathing her and getting through the layers of grime.  Apparently she didnt take a bath the entire week, and it didnt look like she brushed her hair either.  So happy Katy fielded that horror show.  Kaylie had a great time though, and that's all that matters.   It was so different without her this week.  Much more quiet and less chaotic.  I was able to get so much done.  However I did miss my Kaylie girl.  Now I just miss the quiet...  Usually when Alexa naps I have one on one time with Kaylie, but this past week I was able to have me time.   Oh how I miss that. 

Kaylie's fun continued even when she got back.  She had a birthday party Sunday, and yesterday we all went to six flags.  What a great time that was, even though we went in 100 degree weather.    I kept the girls smothered in sun screen but failed to put any on myself.  I came home looking like a lobster.  I hurt all over...  I guess that teaches me.  Its funny because Kevin says to me later I thought you were getting a little pink.  Thanks for telling me :) Alexa loved the water, she didnt go more than 3 inches in but would've stayed there all day if we let her.  It was nice having Kev home for the day.  I cant wait until he's working a normal schedule.

Last week we met with Alexa's case manager for Mass health it looks like she qualifies for 28 hours a week of skilled nursing.  This is great as it would allow me to have a little time to myself and possibly even work part time.  Also they think it would be beneficial for Alexa to start having saline nebulizser treatments to start helping to thin out her secretions.  They are alos recommending a cpap machine.  The great thing about having the case manager request things means that the insurance will definatley approve.  It will be great not having to deal with that irritation from now on.

Alexa still isnt gaining any weight and is down quite a bit from her stomach issues and now the decreased caloric intake.  The doctor is thinking of adding duocal to her formula to help.    We also increased her prilosec dose (reflux medication), but we havent seen to much of a difference as of yet.   She still experiences a lot of pain, and this heat isnt helping much.  It seems like all she wants to do the last few days is sleep.  Her legs havent been quite cooperating either, and her balance seems all off.

Alexa has such a funny personality.  She doesnt like most people, and will get very upset if anyone approaches her.  However whenever she sees someone getting ready to leave she starts blowing kisses and waving to them.  Its a win win situation they leave thinking she likes them and she gets to see them go.  Also I figured something out about her.  She loves cats, but I noticed recently that everytime she sees them and does the sign for cat she says Iiii!  It''s because everytime she pets the cats I say NICE, NICE!  So she now thinks all cats are called nice.  lol 

camping

 

The weeks seem to be flying by. We are just finishing up with Kaylie's school, but I have a feeling the summer will be over before we know it.  Time to send in her protfolio of schoolwork, and get her books for next year.  Second grade :(...  Thats all I have to say about that.  We are going to pick up the girls new/used bunk beds.  You've gotta love craigslist...  I'm looking forward to decorating there new room with matching comforters and pretty curtains.  I even have some cool decals to put up on the wall.  I realize its the little things that get us through the hard days.  Looking for the best deal and finding something I loved for the girls gave me something good to do.  Not that I have tons of time or anything, but it was kind of fun. 

The girls loving on Gabe (most laid back cat ever)

Kaylie is going camping with my folks for the week.  Another week without her, makes me sad.  I know she will love it though and it will be good for her to get out of the house away from all the doctor, and therapy appointments, and just sort of be the only kid again.  I know her grandparents spoil her, but she kind of needs that right now.   It's hard for me to sit in the waiting rooms patiently nevermind sit quietly when the doctors are talking, try doing that 2-3 times a week when your 7.  Kaylie usually al)ways makes a friend in the waiting room.  Doesnt matter their abilities she just loves kids, and often doesnt even notice if there is anything wrong.  I love that about her, and I know the other parents appreciate it as well.  With Kaylie gone I will hopefully be able to get some more packing done, and get our house in order for the real estate agent we have coming to our house. 



even when happy she is still grabbing her tummy



Actually Kalie is usually more of a helper, it's much worse with Alexa.  I can not get anything done when she's awake.  She is constantly needing me... I dont just mean medically although that plays a huge part in it.  She just doesnt let me out of her site, and needs to be constantly held.  She is usually always crying...  I know she has been in so much pain lately, but I think she may be giving me a permanent head ache.  This one has lasted almost a full week.  lol  It's gotten to the point where she doesnt even want her daddy to hold her, and just cries for me.  I feel so sad when I feel that internal frustration boiling up and I look over at her and she is signing hurt.  My heart breaks a bit each time, I see that sign.  I feel so guilty for getting frustrated, and no she isnt just munipulating me.  I can see the pain etched into her face as she hugs her tummy.  I think we found a correlation between her pain and her eating.  Ive noticed that lately anytime she has any food by mouth shortly after the pain seems a lot worse.  I dont know what to about this except not let her have anything by mouth.  She already barely eats anything.  I put a call into the doctor and as usual am waiting for a call back. 

The first part of this was written a few days ago, I forgot to post it. 

We went for a camping day trip this weekend when we dropped Kaylie off.  It was sort of relaxing...  Alexa just wasnt very happy.  She did however go into the pond up to her ankles and refused to move a muscle more.  Her cousin Kira was putting her to shame, cruising around in her little boat, and loving every minute of it.  Alexa splashed around a bit and got some sand on her hands, and put her hands in her mouth.... The rest of the day she was crunching on sand.  lol I couldnt get it out. 

Alexa is getting evaluated for respite nursing care on Friday.  From our phone interview they seened pretty sure she qualifies.  I guess now we just see for how many hours.  This isnt what would allow me to go back to work.  Apparently there is another program that handles that.  I just need to do more paperwork, but I think we will wait until we are moved into our new house for that.  We were supposed to pick up the girls new bunk beds this weekend, but the lady we were buying them from went into labor... (how exciting for them) So we'll pick them up either this week or next.  I cant wait to get them, they are so neat.  I wish they had these type when I was growing up.  It would of made sharing a room with Katy so much cooler. 

Alexa has been having so much pain lately.  She now request medicine by signing for it.  It's like she knows it helps her.  I'm just hoping for the day when she doesnt have any pain.  That would be a miracle.  Just a quick update on her diarrhea episodes of last week.  I realize I didnt update.  Her rash is completely gone, the prescription cream worked wonders.  Thank goodness she doesnt need anymore pain.  We slowed her feeds back down to what she was getting before, and her diarrhea is completely gone.  However she lost over a pound of her hard earned weight.  It took us almost 6 months to get that pound on her.  I dont know what they'll have us do.  We're meeting with the nutritionist again next week.  We'll see what they say.