VIDEOS

Most of you must already know that Amanda passed away Sunday May 13th early in the morning.  I will maybe write more about that later on when I am ready.  For now I just wanted to share some videos that I uploaded for those of you who are not my facebook friends.  There are many …

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STILL SICK

Thank you for your concerns and prayers for Amanda’s health.  Fever seems to be mostly gone but seems like the cold is now moving to her lungs so we are needing to do treatments and lots of manual percussion to keep things moving.  She is still needing oxygen specially during her sleep but she is …

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AMANDA IS SICK

Amanda has been having high heart rate and tons of secretions since last Thursday but it wasn’t until Monday that she developed a fever and thicker secretions.  She had a tough Monday and Tuesday and still has a fever but yesterday and today have been a little bit better.  She is needing some oxygen at …

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EASTER 2012

This Easter I wanted to do something special with Amanda as last year she was only 8 months old and we did nothing Easter related…she still doesn’t know what’s going on but she does enjoy much more activities.  Actually, last Easter I was sad I didn’t do any Easter stuff as I feared she wouldn’t …

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Ready to go shopping!

PARTY GIRL…AND SMA UPDATES

Over the last few days Amanda has attended two birthday parties.  She gets invited to lots and lots of birthday parties and as much as I would love to take her everywhere we still need to be cautious with public places and sick people around her, and we also need to think about how accessible …

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VIDEOS STILL SICK AMANDA IS SICK EASTER 2012 PARTY GIRL…AND SMA UPDATES

May
18
2012

VIDEOS

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Most of you must already know that Amanda passed away Sunday May 13th early in the morning.  I will maybe write more about that later on when I am ready.  For now I just wanted to share some videos that I uploaded for those of you who are not my facebook friends.  There are many more videos that I haven’t uploaded but I will.  Not seeing her is really hard, but watching these videos over and over again bring us closer to her.  Hope you enjoy them as much as we do.

We also want to thank everyone for their kind messages, we have been reading them.  With her passing I realized that without meaning to do so Amanda touched many lives in a very positive way.  Thank you for keeping our family in our prayers, we definitely need the extra strength.

 

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May
12
2012

STILL SICK

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Thank you for your concerns and prayers for Amanda’s health.  Fever seems to be mostly gone but seems like the cold is now moving to her lungs so we are needing to do treatments and lots of manual percussion to keep things moving.  She is still needing oxygen specially during her sleep but she is in good spirits. This is a picture of just a few minutes ago, she fell asleep during therapy so we are letting her rest to continue later.

 

 

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May
11
2012

AMANDA IS SICK

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Amanda has been having high heart rate and tons of secretions since last Thursday but it wasn’t until Monday that she developed a fever and thicker secretions.  She had a tough Monday and Tuesday and still has a fever but yesterday and today have been a little bit better.  She is needing some oxygen at night and during her respiratory therapies.  We have had to change her schedule to do breathing treatments every 4 hours, day and night.  The last 2 nights she didn’t need treatments and she was able to rest a little bit more.  She is taking antibiotics, tylenol and cataflan and is in her Bipap 24/7.  This is the first time she has a significant cold and fever (Last year she had a mild cold) for such a long time and we were freaking out, but she is pulling through pretty well.

We are spoiling her more than ever and she has been receiving lots of love from her grandparents, uncles, cousins, nurses, nanny and of course us!  The secretions are clearer and have lessened, and even though she still has a high fever she is in much better spirits…we think we are almost getting through this.  This has been scary, but then I think about other SMA kids who get RSV or really bad colds and end up hospitalized and intubated and my heart stops.  I know that can happen to Amanda any time and it is a life threatening situation that is always in the back of my mind.  But now, she seems to be doing ok, let’s hope everything stays under control :)

 

 

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Apr
12
2012

EASTER 2012

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This Easter I wanted to do something special with Amanda as last year she was only 8 months old and we did nothing Easter related…she still doesn’t know what’s going on but she does enjoy much more activities.  Actually, last Easter I was sad I didn’t do any Easter stuff as I feared she wouldn’t live to see another Easter, but she did!  I found the perfect egg painting kit for her–it literally seemed like it was made for her–with painting rolls that she could hold and move on her own.  Teacher Maecy came over and we all had a blast painting eggs and putting stickers on them.  I had emptied the eggs so they were light enough for her to hold (sticky paint also helped her hold them :) ).

Holding my Easter eggs :)

That night we had some stickers left overs so we filled out a page from her art book.  She was really entertained.

Ballerina Stickers!

Over Easter weekend we went to Buenaventura and did all the usual.  Pool (this time we went to a new pool), zoo, hotel pool, walk, touch the piano and movies–we got Tangled for her and it’s actually a great movie, I have yet to see the end and I can’t wait.  This time we also got to try the new swings they installed in a park.  They were awesome for us as I could hold her and swing for a long time without straining my back and neck.  She loved it and almost fell asleep :)   As you might have seen on facebook we had an amazing photoshoot with Martha Bravo…the pictures are great and we are so happy to have beautiful memories captured in beautiful pictures with our princess.  We had a really good Easter :)

Love my new hat!

New pool!

At the zoo!

We saw a peacock!

Hugs at the pool

Singing in the rain :)

Swings!

With Vicky!

With my Easter eggs and bunnies that mommy and my cousins got me!

Happy Easter!

 

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Apr
02
2012

PARTY GIRL…AND SMA UPDATES

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Over the last few days Amanda has attended two birthday parties.  She gets invited to lots and lots of birthday parties and as much as I would love to take her everywhere we still need to be cautious with public places and sick people around her, and we also need to think about how accessible the place is before adventuring.  This time she went to Valentina’s 1st birthday party–Valentina is Amanda’s first cousin and is only 7 months younger than her.  Valentina says Amanda’s name and calls her whenever she comes to our home or sees her from a distance.  She also went to a Pau’s and Charlie’s Circus Birthday Party where she had lots of fun.

With Valentina's Cake

Looking good.

With the birthday boy and girl...and their mommies :)

Juanmi and my possible mother-in-law :)

Posing!

This Saturday Amanda ran a lot of errands :)   First we went for lunch, where she was asleep for the most part, then we went to Felix where she got 3 DVDs and a scrapbook for her art projects ;) .  Then we also went to GDP to get stuff for Easter, only it was too crowded and she stayed in one place while I picked something out.  I wanted to avoid dealing with real eggs, but I guess the old way it’s still the way to do it.  I got her a bunny but will think about the eggs :) .  Finally, we headed to the ER where her pediatrician drew blood from her artery because her veins did not work last Thursday :( .  She wasn’t too happy but after a few snuggles and Nemo she forgot all about it.

Ready to go shopping!

Loving lipstick!

I also wanted to update on Amanda.  Even though she does not have a cold or any medical issues other than the SMA, she has some bad moments once in a while.  This past Friday as I had just left home her nurse called me to come back–she had turned pale again.  When I arrived she looked as if nothing had happened.  These episodes come and go, but they make it really hard to leave her because I fear that one of them might be fatal.  As careful as we are with her, this things can always happen.

SMA has been progressing and we have noticed that Amanda can no longer smile.  She tweaks her lips a bit and her eyes sparkle, and I know she is smiling but her smile is no longer there.  We always knew this was something that could happen but we really hoped it didn’t, or at least we hoped it didn’t happen so soon.  This has been really hard to realize and it breaks my heart…seeing her smile brightened my day.  It is the toughest thing she has lost so far and it really hurts us.  The more I think about it, the more it hurts, so, I try really hard to not think about it.  I wanted to write this, not to have a pity party, but for everyone who gets to see and interact with her to know it.  If you are speaking to her or showing her something, don’t give up because you don’t see her smile.  Remember her brain is 100% healthy and she enjoys everything a 1.5 year old does, so continue to interact with her even if you don’t see her smile, because in her heart, she is smiling.

Missing this beautiful smile so much!

: )

 

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Mar
20
2012

SOME GOOD AND SOME BAD

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Since last post there has been a lot going on, good and bad,  and I have been very very busy and most of all tired.  Amanda’s nanny had knee surgery and will take a month and a half off; it’s only been 2 weeks and I am already missing her and her help so much!  The nurses we’ve had since Amanda was 5-6 months are helping us a lot during the day, and this helps a lot, but Amanda wakes up almost every night needing repositioning or just cuddles and the sleepless nights keep adding up.

Last week while one of Amanda’s newest nurses was here we went to our building park (I almost stayed to rest but since it was a new nurse I decided to go) and while Amanda was on Bipap I started to notice that she was crying, then I looked at her pulse oximeter and her O2 was at 91-92; my first thought was that it was giving an incorrect reading–Amanda never desaturates on Bipap, but, her numbers kept dropping.  The nurse suctioned and asked me for the ambu bag…these nurses are well-trained and know what to do FAST, I wasn’t sure about removing the Bipap but she told me to do so and turn on the O2.  At this point Amanda was pale and her saturation was in the 70s.  She gave Amanda a few breaths with the ambu until her numbers came back up.  We put Bipap back on and she suctioned again and lots of secretions came out.  These kinds of things hit hard; while everything was happening I kept thinking, is this it?  Is this her last breath?  It is always shocking and nerve-wracking to see Amanda stop breathing and turn pale/blue.  When she recovered my mind was going crazy looking for answers to why this happened.  Maybe her head wasn’t where it was supposed to be, maybe having her play in a certain position caused secretions to build up, maybe her Bipap settings need to be checked, maybe she is weaker, maybe, maybe, maybe.  The truth is, it is a combination of everything and most likely Amanda getting weaker every day.  In general,  Amanda is not tolerating much time off her Bipap.  She doesn’t like to play without her Bipap on, and sometimes when she is off Bipap she doesn’t look happy.  Bathing her has become more difficult as she keeps choking and needing suction and Bipap.  SMA is progressing fast and I hate watching it taking over my baby without nothing to stop it.  We knew this would happen, but it is never easy.  After a few days of fighting tears there is nothing else to do but to carry on…

Right before going to the social area...

That was the bad, so, the good:  remember how Amanda didn’t like to paint?  Well, maybe it was because I couldn’t find a way to make her do it independently.  With some tips from other SMA families I was able to get her to paint and she loves it!   Here’s a video (she’s better than what the video shows but since I was also holding the camera I didn’t position the paper the right way).  I got her new markers that make it even easier for her to paint and she is loving it!

Focus, focus...

End result! Grandma won (demanded really) my first work of art!

We also watched Tinkerbell together (daddy didn’t really watch he fell asleep) in the living room and this week with Teacher Maecy Amanda had lots of fun!

Ready for Tinkerbell :)

This is AMAZING!

Can you see I am holding both eggs with NO help??? Sweaty hands help :)

This woman is nuts....

But it's so much fun!!

 

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Mar
10
2012

A FEW FIRSTS

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Amanda got her first haircut.  Her hair wasn’t really long but I am a believer that if you want it to grow you need to trim it, plus it was pretty uneven in some places.  She behaved really well through the whole process and the end result is super cute.  She looks a little bit younger…I am such a nostalgic person and I miss baby Amanda so much, so the younger she looks the better for me :)

 

Thanks to ML's expert hands for my haircut!!

Monday Amanda and me went to music class for the first time (www.musictogether.com).  I was a little bit nervous wondering if Amanda would like it or hate it. I was also a bit worried about kids asking questions with complicated answers, or people staring, but all the other moms knew about Amanda and that she would be part of the class and everyone just carried on like I was just any mom with a regular baby.  Amanda she absolutely loved it and I think the more we go the more she will know the songs, the instruments, the other children and make the most out of of it.

All dressed up for class :)

Maracas Time!

This week we tried Amanda on a stander for the first time.  Amanda’s therapist sits and stands her Monday to Friday for a couple of minutes.  To sit, he just holds her from under her arms and then stabilizes her head with a pillow and removes his hands from under her arms.  To stand her he holds her from under her arms while I hold her butt with one hand and straighten her knees with the other.  She sits for about 3-5 minutes and stands for about 2 minutes every day…if she is stable.  Sitting and standing are part of everyone’s lives and not doing so can add future complications to Amanda’s already fragile health.  We do it to prevent low bone density and painful contactures, plus it gives her a more real perspective of life and most important, she enjoys it :)

The stander we trialed isn’t ours, but we wanted to see if it worked for Amanda.  It didn’t so we are in the process to getting her one that is known to work well for kids with SMA Type 1.  We stood her in this one for less than a minute and she was happy during the fitting process.

This is how I sit with my therapist.

And this is how I stand. I am much more taller now, this was 3 months ago.

And I'm up with no one holding me!

 

 

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Mar
06
2012

AMANDA MEETS DORA

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Last week Amanda was invited to a Dora themed birthday party.  I knew she would enjoy it as she is obsessed with Dora thanks to Nick Jr showing it almost 24/7. But this birthday wasn’t only special because she got to meet Dora in person, but because it was the first time I see her happily “participating” in her own way in the party animation.  As Amanda gets older she gets to be more aware of things going on around her and she gets to enjoy them more.  Being older also brings new worries as she will someday start to realize her huge limitations, she will wonder why she is different and she will most likely  get frustrated–but none of this seems to be happening yet.  When the clown and Dora asked the kids to clap I would clap with her and she smiled; she observed what the other kids were doing and she smiled again and again (I can’t really tell you what the kids and clown were doing as I was too busy watching her and absorbing the moment).  Dora even came over and touched her hand…she wasn’t sure about making contact with her hand, but loved seeing her in person.  This was the best time she’s had at a birthday party so far and I can’t wait for more moments like these :)

With friends...

Meeting a very happy new friend...

Meeting Dora!

 

With Dora stuff...thanks Amelie!

 

 

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Mar
04
2012

SURPRISE FOR AMANDA AND FAMILY BBQ

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Last Saturday I took Amanda to visit a toyshop.  This is the first time she goes to one and everything brought a smile to her face and mine!  My hopes were that she would “tell” me what she wanted me to get her, but I think she is too young for that or to understand the concept of buying things. We walked around the hallways, I showed her many things and she was really interested in each of them.  Amanda doesn’t mind if a toy is taken away from her, she doesn’t go through the jealousy that kids typically experience at this age.  Maybe all SMA kids are like this at this age…maybe they know they can’t grab things or take them away from others, so it is not an issue for them.  Or maybe she hasn’t grown an attachment with toys yet (even though she has quite a few and I always give her a doll to have with her).  The only thing she complains about sometimes is the TV and mostly the Ipad.  The Ipad gives her independence and it is something she can do on her own, so probably that’s why she has a stronger attachment to it.  I imagine this will change as she grows older and she will start to ask and complain about more things.  After we walked around the hallways we stood next to the Barbie’s movies stand and all the colors and figures were really appealing to her, so since she really loves her TV I got her a Barbie’s movie.

Still in my PJs Saturday morning.

With Minnie Mouse!

With Barbie.

Analyzing Barbie!

Hmm this doll I have at home!

Trying on purses :)

 

On Sunday we had a family BBQ with some of my cousins to celebrate aunt Mary’s birthday.  Amanda was the first to arrive to our building’s social area and the last one to leave…she has plenty of energy :)   She tasted some chocolate cake (she can’t swallow or move her tongue and jaw much but there is some mouth movement when she tries flavors!) and enjoyed the nice weather along with her cousins.

Working on my tan!

With part of the gang!

Chocolate...good stuff!

With mommy and my aunts.

One of my good friends was at Disney World and when she read that Amanda had gotten the Nemo movie she brought her one!  So that night she watched her movie holding on to the real Nemo.  She looked at the Nemo in her arms and back to the movie to make sure this was really happening :)

Watching Nemo with Nemo ;)

 

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Feb
23
2012

CARNIVALS

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For Carnivals we stayed home with Amanda as it is actually a perfect time to take her out because the city is pretty much deserted.  I remember this time last year Amanda had just gotten out of the Hospital from Aspiration Pneumonia and we didn’t even have her special medical stroller or her van which allows us to get her out of the house.  So much has changed, in good and bad ways–more good actually.  The good is that we have gotten Amanda out and she has experienced so much even with all her limitations which are a great lot, but by focusing on what she CAN do we have been able to fill her life with fun experiences.  We are also much more familiar with all her machines and feel more prepared to manage her.  Bad part is how much weaker she is respiratory wise compared to a year ago.  But the important part, is that she is a happy baby :)

Starting Saturday my mind started to wander and wander what it was that we would do with her.  Luckily she isn’t too demanding and just getting her in the van and out is an adventure for her.  So, we put on her jeggins and big girl top, grabbed Dora and headed to the mall.  We had lunch while she watched Baby TV in her Ipad.  Then we went shopping for a present for her friend Mateo who was born last week.  She was pretty serious (she didn’t like it when I turned off the Ipad) until I showed her girls clothes and she finally smiled, how could I not get her a dress with that smile?

I have jeggins too!

Present for Maeto...boys clothes=BORING!

Now we're talking, this is much much better :)

 

We then walked around the mall and in the Hermes store there was a plush horse that I was showing to her, my mom’s friend who works there asked us to walk in and she grabbed the horse for Amanda to see and touch.  She loved it… we joked that we will ask grandpa to get it for Amanda (yeah right, it was 500.00!!!)

Pretty plush horse.

 

Hmm, ok no horse, so what else are we buying?

Sunday we decided to go to the Causeway for lunch and a walk.  Unfortunately it started pouring and we weren’t able to take her for a walk (perfect excuse to go again soon!), but instead we went shopping–again– for the first movie we would all watch together the next day.  Amanda loves TV but all she has watched so far are short episodes but never a movie.  We got Nemo and Tinkerbell!  That night Amanda fell asleep earlier than usual, Causeway and mall were quite a lot activities for her.

Loving the summer!

Movie shopping!

Daddy trying out new camera lens...

All set! Nemo and Tinkerbell :)

Picture at the fountain.

Monday we went to the Terrace at Club Union where kids aren’t allowed but a little begging from daddy and smiles from Amanda convinced the guy to let us in…we were the only people there which was really nice.  After she woke up from her nap we walked to a nearby park for some pictures and a view of the ocean.  Panama’s heat is insane and Amanda was not too happy, maybe it was the heat or maybe she was just cranky/tired after her nap.  Then at night we settled Amanda in our room to watch Nemo and she loved it!  She babbled and smiled until she finally fell asleep; she watched about and hour and a half of the movie with no complaints.  I love watching her fall asleep while watching TV or reading books.

This is the life...

I'm upset, no more pictures!

Super hot @ the park...

Watching Nemo with mommy and daddy in their bed ; )

Tuesday everything was closed so guess what, we went again to the mall to the same place we usually go eat.  They know us by now, so they take us to “our” table and are really nice to us.  It has a terrace and it’s never too crowded so it works for us.  We wanted to do one more thing at the mall but the store was closed, so we will do that soon hopefully–it’s a surprise!

 

 

 

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