pre mature



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!





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 ;)




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!






On Valentine’s Day Amanda had three friends over: Valentina, Gretel and Teacher Maecy.  She sat in the living room patiently waiting for them and when they arrived they had a blast playing with maracas, plastic eggs and many other fun things.  At one point either Amanda, Gretel or Valentina cried, after all, they are kids/babies!  Amanda became upset mainly when Teacher Maecy’s attention wasn’t 100% on her but overall she had a good time and it is important for her to socialize and learn how to share.

Playing with my friends


Amanda’s super cute and considerate cousins also came over to give her Valentine’s Day gifts.  They got her a book and a stuffed animal.  Victoria is such a loving and sensitive girl; she loves to come and read to Amanda.  She really really wishes Amanda could speak and walk someday; she asked me if she would and I said “probably not, but she is really happy and loves when you talk, read and play with her”.  She just looked at me and kept playing with Amanda’s hand.  The other day she noticed how Amanda moves her wrists and she said that Amanda just needs more practice to be able to move but that she will.  It is difficult to explain to kids why Amanda is the way she is and I imagine it is really hard for them to understand why.

Thank you cousins!!

This week we’ve had a few uncommon situations with Amanda.  Wednesday almost at dawn I noticed her respiratory rate was super fast while she was sleeping.  We called her pediatrician and he advised us to nebulize and suction her.  We also added a round of cough assist.  Poor thing woke up with a smile and then did not want to go back to sleep.  After speaking with other SMA families it was probably the Bipap thinking Amanda was triggering a breath when she wasn’t due to her mask being too small or not placed correctly.  We have also noticed some rumbling in her lungs that goes away when we move her.  And yesterday we heard something stuck in her throat, I immediately grabbed Bipap and could see she was already not breathing.  Even with Bipap she wasn’t breathing which really scared me because for the past few months we have managed to keep her from desaturating by using Bipap right away.  I quickly suctioned and she recovered.  She was sweaty and tired from the episode.  Then, just a few minutes later she started to choke again while on Bipap…this is not good.  So we did a round of Cough Assist and suction.  At night we noticed her scopolamine patch wasn’t there so that might be the reason she was having so much secretions.  She has been o.k for the rest of the evening but we will watch her closely and hope nothing else happens.

Looking so pretty!

Playing before bedtime.


Amanda is 1.5 yrs old!

Yes, Amanda is getting bigger, smarter and demanding.  She turned 18 months on February 10th and we sang her Happy Birthday with a cake on Sunday.  She is getting bigger by the minute, she looks so big and grown up sitting in her Tumble Forms chair.  5 months ago when we first sat her her feet wouldn’t reach the bed/floor, now they almost do!  I always wonder what she would look like if she didn’t have SMA, and looking at her sitting down kind of gives me a picture (minus the Bipap).

Even though SMA does not affect the brain, it is hard to teach things to Amanda as she can’t respond or make much gestures that she is ‘getting it’; all she has is her big expressive eyes.  So, when she was sitting I tried asking her to recognize the people in the room, and she did right away, I didn’t even need to ask twice!  I asked her: “Amanda, where is nanny?” and she looked to the right, then “Amanda where is nurse Sonia?” and she looked to the left, and: “Where is mommy?” and she looked right into my eyes!  Then I started wondering what Amanda thought about two of her nurses being named Sonia, so when the next Sonia came I had them both at each sides and I asked her: “Amanda where is Sonia?, and she looked to the left and immediately to the right…isn’t she brilliant?  I wanted to squeeze her!

Of course I know who everybody is, what did you all think, huh?


Looking gorgeous for my visitors


Happy 1.5 Birthday to me!


I've got some crazy, cute cousins.

Mommy cuddles are the best...

After the cake we went to swing and play.





We also had some visitors this weekend :)

With aunt Lilia and Bea!



Amanda’s Updates

I’ve been quiet for a few weeks, but there has been a lot going on with Amanda.  She visited her pediatrician and pulmonologist and they both were very happy with her health this past few months.  Her pediatrician says he’s staring to believe that the AA diet is giving her more strength because he saw her moving her arms and legs which she didn’t use to do since she turned 6-8 months.  Her pulmonologist said she feels the disease hasn’t progressed too much since October-November when she had to increase her Bipap settings because she was struggling to breathe when she was off Bipap.  We have noticed there is a trend with Amanda.  She is good and stable for a few months, then she starts to have bad days in which we notice the disease progresses and there are certain things that we have to stop doing; for example, holding her and going into the pool without Bipap is not possible now.  She can’t cry without her Bipap either.

It is a little bit funny when we go to see Amanda’s pulmonologist because Amanda knows she often takes her blood out and well, she isn’t her favorite person.  Last week we were waiting for her to arrive and as soon as Amanda heard her voice she started crying, she hadn’t even seen her!  I didn’t realize she disliked her that much…but later they made peace and Amanda managed to stop crying.

Now, to the updates:

Juandi and I had to travel for two days and both my sister in laws cooperated to stay each one night with Amanda and her nurses.  Amanda’s cousin, Ximena, stayed over too :)   Amanda’s aunt Marisol also came both days to keep them company.  It is awesome to count on so many people when we need help!

Ximena and Amanda

Helping to bathe Amanda

A good friend of mine visited us with her baby.  We took pictures of the girls, Amanda showed them how she played with the Ipad and we took them outside for a walk while we talked and talked.

Emilia and Amanda

I took Amanda to a Alessa’s 2nd birthday party where she showed off her new tooth, dress and bracelets!

Dressed up!

New tooth...ouch!

With teacher Maecy Amanda played with the maracas and painted a dog that I had bought for her.  I had tried to paint the dog with her but she wasn’t interested so I mentioned this to Maecy and she tried it.  Amanda really liked it and I realized the problem was the way I was painting it–following all the lines, making it super neat and cute.  Apparently, Amanda had her own agenda for the puppy; she wanted it messy and Maecy knew just how to do it :)


Painting MY way!

And again, Buenaventura this past weekend!!!

Marifer and Amanda watching TV

Matching swimsuits from Grandma :)

Moving my arms

Strolling around with Valentina

Ready for the pool again...

With grandpa and mommy

Daddy and me

Ready to go home :(


Buenaventura, AGAIN!

Last week a lot of my friends were at Buenaventura for the Summer Kids Camp with their kids, so we joined them during the weekend.  It was nice  to be with our friends and their kids and we also think it is important for Amanda’s social development to see people her own age :)   The summer is gorgeous and short, so we have to take advantage! We did realize one thing though, as much as we wanted to participate activities with everyone else we just can’t move at other people’s pace; we can’t rush with Amanda, we can’t skip a step and we can’t improvise too much.  Everything requires thought, organization and a lot of time.  Getting her and her machines settled in a new room, getting her into the pool and out, leaving the house, moving her from one side of the bed to the other, managing her machines, everything needs to be done very carefully.  But, we are so grateful for all the help we have…thanks to that help Juandi and I are still able to go out with friends and family, not too far and for too long though :)

So if you have read previous posts on Buenaventura you all know how it goes!  Pool, piano, walks, restaurant (no pool or zoo this time…boo).  The bonus this time was playing Ipad with friends!  I started to play it with Amanda and the girls joined and were all touching the screen!  Here are some pictures.

Posing with Antonio!

Wearing my sunglasses with Bipap and I'm not mad this time!

Problem is, they're so fashionably dark that you can't see my eyes, so mommy poked to see what they were up to...

Chillin while everyone has lunch...

Piano time! Someone from the hotel personnel came to tell me to stop but when he saw how cute I was he decided not to say anything. I am irrisistible :)


Breaking into my new umbrella, the sun was REALLY REALLY shinning

Friends watching me play with Ipad.

Now we're all playing together. I can share :)

Me and my daddy!

Swimming on my own.

Nap time, bye bye Buenaventura! See you soon...hopefully :)


Fun (and funny) Stuff…

Over here someone is becoming a little vain.  Yes, Amanda loves to look at herself in the mirror, and when we take it away, she does not like it one bit.  We used the mirror a lot when she was younger, but we hadn’t used it much for quite a few months…I kind of forgot about it and one day I realized, wow Amanda hasn’t seen herself in the mirror in such a long time, just occasionally when I held her and we walked around the house.  But then again, she is not tolerating being held without Bipap, so we haven’t been walking around the house lately.  Bringing it back was definitely a good idea ;)

It all started one day during Physical Therapy when she was sitting down.  She smiled and kept looking at herself.  It is so cute to sew how she examines herself.

Don't I look beautiful?

With teacher Maecy we played with shaving cream all over her body, she loved looking at the mirror and did not want me to take it away for a second.

Singing Goodbye!

Yesterday I put lipsgloss in myself and then put it on her…she smiled at my lips and at the sensation on her lips, and when she looked in the mirror she was excited.  Then we did some blush which was also really funny apparently.

Getting pretty for my uncle who came to visit :)

In the afternoon we decided to try the swing that was sent to us a while back by families of SMA; it needs more twitching for next time, but we at least got it out and found a place to hang it from :)   I think some kids in our building weren’t too happy at us switching the swings around, sorry!



Last Monday, which was a Holiday, we took Amanda to Parque Omar for her first picnic.  Our plans were to put her on the floor and do the whole thing but as soon as we put the blanket on the grass huge ants started crawling in it, not what we expected.  So, she had to stay in her stroller.  We put her new sunglasses which can go under her Bipap but she wasn’t so happy; we need to try them more often and hopefully she can get used to them…it would be a lot better for her when she’s in the pool and strolling around.  When we stopped at a spot and started the picnic Amanda started to cry, this is a trend now, when she doesn’t have it her way (in this case walking around) she cries.  But a little singing, ignoring the crying (yes, ignoring, her nurses tend to worry if she cries, but I know a tantrum cry from a real cry), pointing at stuff at the park, and playing with the bubble machine maker did the trick.  We then went for another walk and headed back home :)

New shades feel weird!

Daddy cuddles after the park

In my PJs!


First Time Baking = First Tantrum

A couple of weeks ago I bought the simplest cookie dough I could find to try baking with Amanda.  So last week I put her in her tumble forms chair with her Bipap, get all the stuff ready and when I put the cookie dough bag in her hands she starts crying.  So I sing and play with her and she stops.  Then the second I grab the ingredients she starts crying again.  When Amanda cries without her Bipap it is only a few minutes after she starts to desaturate, turn pale, blue and stop breathing; it takes too much effort to cry and she can’t do both at the same time.  When she is on her Bipap she can cry without so many issues.  But I guess since she was also sitting down her stats started to drop to 93′s.  So, after a few minutes of trying to calm her and not being successful I had to give in and bring her DVD.  So, the baking went with me mixing and making the cookies while she watched The Wonder Pets.  I tried to make her mix and observe but she was not interested!  She wants her way and if she doesn’t get it she throws a tantrum like any other kid would do…it is funny to watch, and at least it is something normal that we get to deal with (this was pointed out to me by another SMA mom and she is so right!).  BUT, now we have to figure out how to educate this little lady!

The pictures look like she was totally into it, but in reality, she was totally into her DVD :)

Baking 101

Can't keep my eyes off The Wonder Pets

NOT interested

They were so good!! :)

Older posts «

» Newer posts