Friday, December 26, 2008


Click to play Deedee's 2nd Xmas
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Here's what went on in "Nochebuena" and in Xmas day... Enjoy! :)

Wednesday, December 24, 2008

Finally Bathing... in the Bath!

Click to play DeeVas Bath Chair Blues
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Yes, last week our Deeva FINALLY got her bathing chair. After a quest to get a long hose showerhead, she finally got her first official bath... in the bathtub! Yay! Here is a slideshow about it... Enjoy! :)

And if you were wondering about DeeVa's teeth... Well, not only she has two front teeth... She got a whole bunch! 6 in total! Watch them LIVE here:

So what else is going on? DeeVa also got a visit today from the bed people, so now a nice position bed with "trendelemberg" features will be ordered and should arrive in a few weeks. That will help a lot in Deeva's respiratory treatment (and in matters of helping caregivers control backaches!). After the scheduled visit in Jan to Children's Specialized we expect to get a new stroller by March, and a stander to help with her physical therapy.

Many people have been generous with DeeVA, giving her some Xmas "stuffers". Thank you all, nurses, people from Early Intervention, SMA families, friends, and family! DeeVa is very excited to get her first official "Santa" visit. Last year she got many blessings, among them the gift of being alive (our Xmas miracle) and this year she finally got to see a tree with pretty lights, Xmas cards and so much people sending their love to her. She knows what is the true meaning of Xmas alright! We miss everyone from the island, but we know that we will go back sooner than everyone expects. You know how it is when you wish upon a star!

So... We would like to remind you all to take a moment this afternoon and remember and live within yourselves the greatest miracle of them all: The birth of Baby Jesus. Yes, it is not today for real, yes it all has been changed and commercialized... But just dismiss those thoughts and keep focus on how innocent things used to be... There are still good people in this world. There is still hope. And the Spirit of Xmas is alive in those who are righteous, courageous and good. Believe, Wish, Dream, and really Live.


Thursday, December 18, 2008

Sweet Sixteen Months... And getting closer to Santa's visit!

Just 7 more days! Yay! I'm so excited! Two days ago it actually starting snowing! Yup, soft white blanket over the cars and building outside. It was not too much, it all melted away quite fast, but it was exciting enough! At least for me, you know... I am a baby of a sunny summer-all-year-long island! LOL

How have I been these last few days? A bit fussy, you may say... My two fron teeth are here! And so are the pain and the fever they bring! And two more are on the way, at their sides... It's never-ending pain! I just wanna be left alone, with my She-Ra and Ariel movies and a continuous feed (food, always the important factor).

It has been so much FUN getting the mail! We have been receiving so many Xmas cards from the other SMA families! We are putting up the cards in the main door, which Mommy had wrapped up in golden paper with small Santa decors ( I guess Mommy misses her office at work, since she decorated around here as she used to do in her workplace!). The door looks so nice! There is a plush Santa face in the middle, and all the cards around it. I like staring at them all, its all colorful and happy.

Just like my Xmas tree. Yes, it had to be kept in small scale... but it looks so pretty in the dark. I like lights, colored lights. they are fun to watch. The small tree has a pine scent. Yup, Mommys trademark of putting one of those car odorizers scented in pine in the tree keeps going! Well, at least we can smell something! :P

This past two weeks I've met four new nurses. One of them is just like Mary Poppins, with such a cheery disposition! That one is a keeper. She talks to me, reads to me, is trying to teach me new words and is so happy at all times! Just the right attitude to be around me. I want happy people! It's all about me! Me! Me!

Still... I wish I had only three stable nurses. This coming and going gets so tiresome... And it disrupts what Mommy and Daddy have to do... Mommy's last day of school is Saturday. These past two weeks she's been chained to the computer, making her big project work.

And Daddy, well, he passed the test last Tuesday, and now has the ID and Certificate as a CNA! For all humans that don't know, that's a Certified Nurse Aide/Assistant, a certificate issued by the State of NJ. He finished that state program, after 4 months of constant sacrifices. YAY!!!! I'm so proud of you, Daddy! One step closer to our family goals! Now, after the RN (registered Nurse) degree... We believe in you!

I'm a bit sad as so many SMA kids are in the hospital. Cornelius reminds me of me months ago... and Shira got RSV. Many others with flu or just feeling ill. I keep all of them in my prayers, as I know God is good and protects all of us. He never stops keeping me safe, and he stands by every one of those kids, and their mommies and daddies. May God grant you all the gifts of healing and family togetherness and peace this Xmas, and always!

I miss my grannies and my great-granny. I miss my 8 kitties, my home, my godparents... I miss humid weather, sun, sweating... I miss the breeze at my home, the silence of the nights, the birdie that use to wake Mommy everyday at 4am... I miss my family. I miss my friends. I also pray to God that we can all be back home soon. There is no place like home.

Bittersweet Xmas... But I am grateful for so many blessings and so much love that has followed me wherever I go! So many people fighting for me, so many helping hands!

One year after the respiratory arrest that landed me in the hospital, here I am. A beautiful big baby that didn't gave up. A beautiful baby that God protected from the beginning. Who would have guessed that I would trigger so much devotion, so much faith? Thanks to me those who love me have witnessed that yes, there is good in the world. Thanks to me my parents are boldly going where others have not gone before! And my life is just beginning, at my sweet sixteen months!

This is only the beginning!


Sunday, November 30, 2008


The delay has not been intentional by any means! Last week was one of THOSE weeks…

On Monday Deedee went to the pediatrician to get her 18 months vaccines and the flu shot. Nothing different happened that day, which seemed normal as Deedee had no previous reactions with any previous vaccination. On Tuesday she showed some degrees of fever in the afternoon. Her stomach seemed a bit distended so she got vented, prune juice and problem solved. Wednesday was the same as Tuesday, fever in the afternoon, distended stomach… She’s never had this problems before. This time she had a suppository in the night.

Thursday morning began with her normal long night feeding finishing. Her morning feeding began, and suddenly she began vomiting. As reaction time was not fast enough, she aspirated some of the milk which led to half an hour of numbers going up and down. The rest of the day was uneventful, although the never-ending venting did increase. She seems to have more gas, out of the blue. She slept through the Thanksgiving afternoon, waking up around 8pm. Her heart rate looked a bit high, and even if she had prune juice there was still no bowel movement. We treated her to some of her favorite sing alongs, and after her respiratory therapy session (which went very well) she fall asleep. No bm for the day, so she got a suppository with no results. So again, we all go to bed around 3am.

Friday morning began with the same routine… setting up the new feeding. Again, baby vomited. Same half an hour session of using ambu, bringing her numbers up, keeping them up, preventing aspiration. This time the reaction time was fast so baby had no aspiration and settled a bit faster. Nevertheless, being twice in a row, and since this is NOT a normal behavior, we called her pediatrician, who asked us to go to ER for a complete checkup. We were thinking that perhaps something happened to her fundapplication, as she had never vomited before since that surgery in January. We also wanted to make sure she had nothing else. Again, her stomach was distended. Before the ambulance’s arrival we put another suppository as she looked evidently bloated, and her heart rate was high. When we arrived to ER we were greeted by an attendant that had seen her at PICU when we arrived. That made us more comfortable, as we knew he would take her more seriously. She got X-ray of chest and tummy, and EKG. And finally got a bm apparently thanks to the excitement. The x-ray showed a bit of atelestasia on the right lung, and some scarce secretions due to no morning respiratory therapy. The tummy x-ray showed her bowels were fine. Nothing that can explain her sudden need for so much venting. Since the events have been going on in mornings causing sudden desats, the doctor ordered her to stay the night at PICU so she could be properly monitored.

Friday night seemed uneventful at first. We finally gave Deedee her respiratory morning session at 5pm… Which helped her a lot. She got blood tests, and the usual… Around 10pm the rt decided she wanted to do the treatment, and she was going to use Xoponex. We told her about the d/c that the doctor had given that since it caused a reaction on Deedee (making her crash twice). So, instead of Xoponex she got Albuterol… Gee, big difference. Xopenex is a derivate of Albuterol, so things went just as we expected… The heart rate sky rocketed, baby had trouble breathing, her hands got really cold and sweaty, her eyes got swollen, and her eyes were only pleading for help. The RT had to stop the Albuterol as it evidently was not doing any good. I guess that the good thing is now we have sound evidence for the pulmonologist about Deedee’s reaction to Albuterol, too. Anyway… After that session and being cough-a-lated, we stayed almost up all night as the machines would not let baby sleep (pressure reading each hour made her wake up crying leading to us comforting her…). She got a blood test early in the morning, which returned negative so there was no virus found. Reaching midday the doctor said we could go home. No way to tell if Deedee just had a reaction to the vaccines, she probably did have a reaction to the flu shot as it was her first one (we are not from this cold place and everyone seems to forget about it), maybe she just was reacting due to her teething (there seem to be 4 teeth about to bust out), maybe it’s all due to her being constipated and bloated (last two weeks that’s the order of the day)… Maybe it was all of the above placed together. There is no way to tell if the fundapplication got loose… They say that it is fairly recent (I year ago) so it should work but anything can happen (so much for answers). So… We were send home (amen) with orders for rubinol and vitamins, no albuterol/xopenex, and prune juice as needed… Hmmm… Brilliant outcome. So… Upon arrival baby went to sleep, along with mommy. Daddy took care of things for the rest of the night.

Today, things seem normal enough, but we are making some adjustments to see what happens. We are diminishing the feeds, making them slower, as we have to figure out why she’s getting so bloated. We are also using one of the wedges to keep her a bit up as she feeds and prevent vomiting (which has worked so far). Making note of her heart rate, making note of bm’s and making note of any behavior, normal or not. So far, she is happily watching Sleeping Beauty.

Tomorrow, daddy has to go get a LMN from the pediatrician, but making sure to mention discontinue order for Albuterol/Xoponex. We don’t want more drama about it with the nurses. That has been another issue this week, and in a way I guess it was a good thing that Deedee showed part of what happens to her when they are used on her. Seems that what parents no longer are believed when we say something has happened to our kids… No more comments about it. It was unnerving, but finally we got the belief in what we say. Every kid is different. Just because a majority benefits from a medicine it doesn’t mean all will do. I know what that is like, as I always have reactions to medicines (and that is why in the end I can only take two things: Tylenol and Erythromicin, I am allergic to many things and it seems Deedee is just like me).

The next adventure is due this next week as well. The Synagis shot will arrive on Tuesday and we must go to the pulmonologist office so they give it to Deedee as it is her first time. (Sight) Somehow this “prevention” is turning out to be a creator of more problems… Let’s cross our fingers and hope nothing else happens.

So… Thanksgiving day went by, with much commotion around it… but not forgotten. In the middle of everything insane that always goes on, we did took a moment to gather as family on Thanksgiving day evening… Daddy, Mommy, and sleeping baby. We are thankful to God for He has blessed us with so much strength! He has opened ways that we are to follow without questions or doubts. Everything has a purpose, we strongly believe that, and we don’t blink twice to simply keep on walking the way He sends us. We are Thankful for Deedee, as she has given us reason to live, reason to be better, reason to fight for us as well as for others, reasons to help as we have been helped. Every time that we have been in need, we have received an answer. Every time Deedee has been in peril, she has been granted more time to be with us. We are grateful for the true friends that we have, for the new friends we have made, for the lives that touch us and the lives that we touch. We are grateful that there is always bread in our table, enough to share with others. We are grateful we are surrounded by love.

This is a picture from our last Thanksgiving in Puerto Rico in 2007. GrannyMillie, Melo, Cindy, GreatAuntie Gladys, Mommy & Daddy. Baby was 3 months old. This is our true family. We miss them very, very much. As we also miss Maria, Steve & Alex. We hope to see you all soon.

May all families know the true meaning of Thanksgiving! May everyone enjoy the wonders that God places upon us, especially by giving us small fragile gifts that bring out the best in all of us.


Friday, November 21, 2008

Welcoming Autumn

Click to play Deedee in Autumn
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Here's a small memento of Deeva's life in Autumn, "scrapbook" style. Enjoy!

Monday, November 17, 2008

Causing a conmotion?

The past two weeks have been full of commotion. Not because of Deeva, but because we changed the nursing service. Long story. At least now we are getting the weekends covered, sort of. Still a work-in-progress in that matter… Not everyone wants to work on weekends.

Deeva’s illness flew away. She’s been really happy these last couple of days. Besides her Princesses, Disney movies, Baby Einstein and Candy Candy routine, now Conan and She-Ra have been added to her daily entertainment. Talk about controlled TV! LOL Well, I think most agree that the 80’s shows were more constructive than todays ones… And we definitively want our Deeva to know the beauty of being “ochentoso”. Next in line are Jem & the Holograms and Mazinger, but first we need to find them.

No doctors appointments until Friday. She has an eye doctor date. And next Monday she has a pediatrician date. Hopefully nothing else will happen this week. Early Intervention shall try exploring a Speech Therapist soon. And we have a date in Children’s Specialized for the beginning of Jan, so new choices for equipment are available.

Deeva’s lower jaw teeth are showing, so that has been making her a bit uncomfortable. Besides that, everything looks good. Hoefully, Thanksgiving will be another nice day to remember. Get those forks ready for turkey!!!


Saturday, November 1, 2008

It was the day before Halloween...

And all through the house
were running up and down
trying to get Deedee's sats
to stay up and about!

Ahh! Yup, we began using the nebulizer and the Rubinol pill, but somehow all seems to be worst, not better. The plugs are thickened and the secretions keep coming... On Thursday morning the sats would not go beyond 93 for a while, so we called up the pulmonologist and she asked us to go to ER to get a culture and Xray just in case. So... We went through the lovely routine of calling 911, getting ready 9this time with food and all, in case we had to stay) and off we went. Thank God that the ambulance crew was one that had already handled us... Great guys! So we got to ER, and we were placed on a sick bay. Everything went as usual, the wait was a bit long but we are used to it... NurseGlenna stayed with us, so we had both moral support and something interesting to hear (she has many real stories to tell).

Anyway, after having a picnic at ER, an Xray that looked a bit blurry to us but ok to the local doctors... and getting negative results for Deedee's tests (RSV and FLU), we were sent home. We are to do Nebulizer and whole cpt/vibration/cough assist every 4 hours until things get better, plus Rubinol each 8 hours... Ok, sounds like a plan... Right...

Thursday night was a nightmare. Mommy tried to keep up helping Daddy with the whole thing, and the new routine kept us up all night. The beepings are such a lovely melody... So Halloween crept upon us with a trick... A spell of Sleeplessness. As the "Corpse Bride's" song goes, sleep is "uninportant, OVERRATED!". At least we got a small break as NurseGlenna arrived. We did everything routine, then went on with the "Super Heroe Plan". Yes, we were very tired, and the situation is very stressing... So when there's high stress, you should also do some high unwind! LOL

By 1:00pm we were all into our secret identities. Wonder Baby stole the show (even if for a while she was more interested in Ariel). WonderMommy and Flashito were also a hit. Even a Go-Go dancer made an appearance as the damnsel in distress! And Therapist Pat came in as Justice League representative to make sure we didn't eat candy, just pretzels, and to keep WonderBaby in shape. We all defeated the evil Cat-Kitty... (Ok, we needed a villain so bear with us). The evening got to an end and every child was sent home... And back to our secret identities (and being designated slaves to our beloved Deeva).

The rest of the afternoon and night we've been following the 4-hours treatment scheme, but secretions and everything seem the same. The night was lovely, long... We went to sleep almost reaching the dawn. Mommy had to force herself to sleep as she was not feeling well, so she took Benadryl to go to lalaland. Daddy was in charge of Deeva for the morning.

During Saturday's evening we decided that nebulizing so much has not done much but to increase bad plugs. So, we decided to try giving the complete Rubinol and skip a nebulizer. On the last treatment things went better. Lungs are clear. Still, the hovering between 94-96 is unnerving. By daylight there is no beep, but at night is party all night... We'll see how it goes after midnight. So far, it all seems a copy of yesterday. At least she is not getting worst. We have to keep this up until Monday, when she must go see the pulmonologist at midday. At least that date did not took long to plan.

We may be targeting the wrong thing... What if Deedee is allergic to something in the environment? The change in climate is sharp and very bad. Some days its 45 degrees, other days 70. No stability... Although we try to keep the temperature constant in her room and within the apartment. But, Mommy is allergic, and has been with bad sinus... What if baby also has sinus? We'll see on Monday. So far she's been fighting it all... as the WonderBaby she is... We all know it is NOT a secret identity after all.


Deedee's Second Halloween

Click to play Deedee's Halloween 2008
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Last year she was a dashing devilette. This year, we all became heroes...

Tuesday, October 21, 2008

A year after my Baptism

Last week was so, so… boring, uneventful… I guess that can be good given my situation. I simply kept on minding my own business, watching my beloved videos, exercising so my baby muscles keep on flexing, and trying to figure out how to make the rooster sing (adaptive toy loan… the switch is not as simple as it appeared). I’ve been using the special stroller a-lot.

Now that I showed everyone that I can actually be a bit seated (30 degrees), I get to hang out using it… without much problems. Mommy & Daddy figured out it is better to use the suctioning catheter instead of the wand when I’m “seated” like that, so my throat is not damaged.

What a head start for this week! I had a date on Monday morning with my pulmonologist, Dr Aguila. Wow! I was beyond impressed. This lady asked everything from when I was born to the current facts, looked up my x-rays, and checked me up completely. Answered questions, was friendly, offered her assistants availability 24/7… Turns out that back when I was in ER I really had beginnings of pneumonia. She showed daddy the spots in the x-ray, and was mad that ER had not sent us to a specialist upon letting us go. Things that makes you go hmmm, I guess…

Anyway, that story should be over. She assessed my current needs. With the new cold season upon us, and this not so sunny weather, she prescribed a medication to help secretions come up at treatment time (what most know as nebulizer, using Xonopex), and a medication so my slaves can have a bit more time to breathe (Robinul, half a pill for starters). NurseGlenna wanted to start me on it right away, and so did she. Mommy recalled the process for the nebulizer from the hospital, not difficult at all. Just add 20 minutes before my scheduled treatment routine so it is done consistently.

UncleSti called in the afternoon. He’s alive! And kicking! And still a cool guy! I know, he doesn’t forget about me… He always make sure that people on his church pray a lot for me. That may be one reason I am big and beautiful and alive. I also got some pics of FatherEdwin and the changes at the Fatima Church. It is all so green! Like hope! I like it! It looks happy!

Today there was a meeting with my communication specialist and my physical therapists. They showed me a few tricks with the weird switch. I definitively like the rooster, it’s funny. There will be a meeting soon to see which services stay for a bit longer in a few weeks. Everyone is happy that I get to be off my back for a few hours. Yay!

Mommy has been a busy bee with her assignments. Geesh, these classes are bleeding her dry! Daddy is following those footsteps with his practice. I miss having everyone around me around the clock… But it is ok, I know that they are both there when I need it. They are my best support team!

It’s been one year since my baptism. Who would have known that it turned out to be one of the most important dates of my life, besides my being born! God watches over me day and night. He blesses me constantly, sending me so many good things. Yup, He sends not too much, not too less, just the right amount. I am humbled and grateful to Him…

Being here on Earth has been quite an experience! Most think I am in pain, as things are hard… a simple thing like breathing is a big thing for me… But you know what? Every little second is worth all my effort. Because of my hard work I keep receiving the greatest gift of all: Love. May all babies around the world get this gift as a reward for their effort, for their will to live. God, let this small request be.


Thursday, October 9, 2008

Doctor appointment today: Dr Bach

Today we had our big date with Dr.Bach. It was so exciting to have all my entourage around me, going out of the house and facing daylight! I saw my old friends Enrique, Loui and Bach. Mommy and Daddy asked some questions about me (they had a list, and it all was addressed). TherapistEllen was there with us too, and when asked if I could sit the doctor just asked the paramedics to lift up the bed to seating position. Oh, I showed everyone what I can do when I’m in a good mood. My stats stayed high, and Ellen was so excited about it! I got a prescription so a cardiologist can check up my heart rate, but besides that everything is just fine. My lungs are ok, the doctor was happy to hear I am following the Amino acid Diet… So everything I’ve been doing is exactly what I should stay doing. Mommy got a green light to try carnitine again, and to find when to get my flu shot so I’m more protected at home. The team that provide transport today was very nice people. Everything was fast, so in a blink I was back home watching Little Mermaid 3.

Mommy started this month being sick. The weather is really cold (at least for us). It’s funny, mommy went to a doctor’s appointment on Friday and the trip (cold wind) put her in bed for almost 4 days! He also started her fall session at the online university… It’s been a tiresome busy week for her. Mommy and Daddy have also been filling up much paperwork, trying to figure out if we can find another home. We cannot keep living where we are right now, rent is too high, and it does not include utilities… They are trying everything they can to comply with requisites and with finding something that they can afford and that is safe for me.

Mommy contacted the CP Loaning Center so I will soon get a switch and an adapted toy to try it… That will be fun! I will also begin having a nighttime nurse soon, so I can have an additional treatment during the night. Let’s see if Mommy and Daddy can keep up with having a stranger in the house at night… They were not thrilled with that idea in the beginning… We’ll see how that goes.

NurseGlenna is going to Chicago for the weekend. Wish her a good trip! We’ll miss you! TherapistPat will also go travel, this one to Hawaii. Someday I will travel, to Disney and then back home to my beloved little island. Time runs so fast, that I know it will be soon enough. I miss Auntie and Sti and Maria and Granma and everyone else… I miss the beautiful sunrises and the quiet starry nights. I wish I could be home for Christmas… Soon enough. Wishes come true.

Thank you, God, for you have granted so many good things to me! I am unique and precious, and so much love is always around me! Thank you for you open doors when there seems no hope and no way out… Thank you for protecting Mommy and Daddy, for the courage you give them to face every day with a smile and belief that things WILL get better. Thank you, God, for helping so many kids out there that have been in the hospital and have been in need of Your healing touch! Bless so many families that need hope with Your presence, keep granting so many small miracles that make such a big difference!