I know, I know... I'm getting lazy here! Well, actually no, is not that. Mommy has been VERY busy preparing the handbook for my future caregivers, in training for her new part time job, and taking care of me. So she cannot take commands from me as often as i would like... Geesh! At least she still surprises me every now and then! And I can do the same... Yesterday when she arrived she was down, tired, sad and beat, but then she looked at me and Super-Smile! Yup, all this time I've been keeping it a secret but I decided to get out and scream it to the world: I am Super-Baby!
Last week was normal enough... My therapists came all at once on Friday, and a new one joined the club. Her name is Tracy, and she'll be helping with my communication skills. Yay! Hopefully that way everyone will understand I am not that crazy about the mermaid! Daddy got mommy a camera, and now she's back to her photo-mania. She won't leave me alone! I just want to sleep, and she keeps making me pose. How rude!
Well... Gotta keep this one short. I gotta sleep, mommy's gotta sleep, and daddy's gotta play. God keeps bringing many good things into my life, and for mommy and daddy... some are blessings in disguise, but I know they are all over us. Thats why I smile so much lately! Oh, I know so many things! But I ain't gonna teeeellll!
10-4
In loving memory of a 5 year old diva with Spinal Muscular Atrophy Type 1 who changed our lives forever
Monday, June 30, 2008
Wednesday, June 18, 2008
Father's Day and more
Here we are welcoming sunshine in the middle of June. The climate keeps on being crazy, bringing on heatwave and then cold days. It’s all weird. Me, I’m getting my therapies in place, in love with the mobile-puppets invention, and loving my Baby Einstein videos. Still enjoying songs, though. Occupied all the time, every day is a busy day for me! Sometimes it is hard for Mommy to keep up with me, but well, you know that happens when you reach a certain age… So I understand…
I’m happy. I’m blessed with so much people that care for me and love me so much! Little by little I know that God acts through me, bringing laughter and joy to everyone I meet. I speak so loudly with my eyes! And everyone notices! I am here to deliver a message to each and everyone I meet, a message of love.
Well, here goes a small glimpse at my daily life. This past week, in my life:
WEDNESDAY JUNE 11
Therapist Helen passed by, and brought me a light up piano and an orange wedge! So now I have no excuses to practice being a bit more in an upwards position (not too much, though… my belly breathing gets bad when seated). I loved the piano! It will help me improve my fingers strength.
The day was hot (reaching the 100s), so I was kept in my nursery. No problem, Mommy makes sure I have plenty to do in there. The therapy games go on through the afternoon. At night we had another slumber party because of the heat outside! I won’t complain. I love having Mommy and Daddy in my room. Makes me sleep better as I feel much safer. I guess that’s why I’ve been in a happier mood… I love being around Mommy and Daddy.
THURSDAY JUNE 12
Mommy woke up early to clean up and put together the apartment. It was all so messy! I slept through the whole morning, waking up at midday. The heat wave goes on, so Mommy kept me in my room after bathing me and doing the morning treatment. A lady passed by in the afternoon, the nurse in charge of evaluation before the official nurses that will be coming to help Mommy with me arrive. No official date yet, they should tell Mommy next week.
FRIDAY JUNE 13
Aha! Friday 13th! I was told Freddy Krueger was around… Daddy went off to his courses and I spent the whole day taking it easy with Mommy. Therapist Patty is on vacation, and should pass by next week. The day was hot, but by night time there were thunderstorms! The light went out for some minutes, but came back fast. We were all packed in my room, because of the cool air and to play with me. Mommy read some books while torturing Daddy with the Spanish songs CD… That was FUN!
SATURDAY JUNE 14
There was a bit of commotion outside my room… The landowner appeared with his nephew to put up a ceiling fan, and boy, were they loud! What a racket! Mommy bathed me and gave me my morning treatment, and just dared to peek outside the room… She is allergic to everything so she basically closed the door so we both would be safe from dust. In the afternoon it was all done… The fan works, but not from the wall switch… Blooper? Oh, well… At least now I can fly off the nursery to the living room and not be fried in the heat!
SUNDAY JUNE 15 FATHER’S DAY
It was a typical Sunday, Mommy and Daddy were gathered with me the whole day. Since it was Father’s Day I was all dressed up in a pretty dress with Cinderella’s face embroidered in the front. Daddy played some in the computer, then watched some movies with me and Mommy. We were a bit sad that no one called or visited, but by now we are getting used to it. I tried to make Daddy feel special by smiling whenever he passed by me… Well, actually I’m always smiling whenever he is around. Yup, I’m a typical daddy’s girl. I’m very lucky to have him at my side most of the time. He is my favorite silly toy! :P
MONDAY JUNE 16 DOCTOR’s APPOINTMENT
What an adventure! I did not fit well on the car-seat, so the bucke had to stay unlocked. We were lucky the taxi driver said it was okay… Not the safest, but Mommy insisted we had to go because I had a slight reddish bump in my head that she wanted to check. So, off we went. The equipment behaved, and we arrived safely to the office building. We found the place really easy, and waited just a bit. When I was called, a nurse checked my basics… I am 29 inches long and I weight 24.17 pounds!
The nurse was really nice to me, and talked a lot with me. She really liked me, and I know she sent many blessings my way. Then the attendant checked me up, DO Salinas. I remembered her from the day I was discharged from PICU… Mommy asked about the creatinine, the reddish bump in my head and my shots. Luckily my shots are due when I am 12 months, they want me to stay off any medicine as long as I don’t need them, and the red bump seems to be some kind of fungus for which I’ll be washing my head with a special shampoo. My 10-month checkup was a success, nothing was found wrong with me. They were surprised at my lungs being so clear. Well, what did they expect? Mommy and Daddy take good care of me. They want to keep my lungs as healthy as they can be!
I got an appointment for next month, my diet was changed to fewer feeds per day to see if I loose a little weight since I’m off the charts (gee, am I Mommy’s clone or what), and an ophthalmologist appointment in November. Going back home was less of a hassle as the taxi driver loaded me with stroller and all as he figured out the car seat was a big problem. We got home in one piece… I tell you, I arrived, and as soon as I was placed in my bouncer I kissed it! There’s no place like home!
Just as we arrived the mail people were here to deliver letters and a box. I got some nice dresses from Ally and Tina. They also sent Mommy some stuff for the kitchen (now Mommy cannot elude cooking! LOL). Thank you guys!
TUESDAY JUNE 17
It was another long day. Mommy had trouble sleeping, and was in “default mode” for the whole day. Since it was a nice day she took me to the living room, where I was treated to some Princess sing alongs. I fall asleep by mid afternoon, as usual.
Daddy went to his daily courses, and arrived a bit late. Mommy had sent him on a special mission which he fulfilled brilliantly. When he arrived he sent Mommy to sleep, she looked beat! Well, actually she was… and she slept almost until midnight. She got up in time to watch Daddy do my before bedtime daily treatment. I fall asleep fast, holding on to my golden Sheepie.
WEDNESDAY JUNE 18
Helen, one of my therapists, came in today. Mommy was just finished with my morning bath and treatment, and flew me off to the living room. So, Helen stretched my arms and legs, and played with me. I was a bit sleepy, so by the end of the session I almost fall asleep.
Mommy placed me in the floor, and while I watched some Baby Einstein she also placed the sling over me. She put up the restraints Daddy got me, and so my arms are in the air! I played a bit with my beloved MissButterfly. I watched the sign language, the sky, and the farm videos today. So far I love sheep and cows and the stars.
The day has been very comfortable, and is getting very dark as well. I think there might be a thunderstorm… They are very common these days… I don’t get scared. Mommy is always around to protect me.
And so it ends another week review... My, I'm so young and yet I have so much to tell! And I do so many things! It's not easy being a diva!
I’m happy. I’m blessed with so much people that care for me and love me so much! Little by little I know that God acts through me, bringing laughter and joy to everyone I meet. I speak so loudly with my eyes! And everyone notices! I am here to deliver a message to each and everyone I meet, a message of love.
Well, here goes a small glimpse at my daily life. This past week, in my life:
WEDNESDAY JUNE 11
Therapist Helen passed by, and brought me a light up piano and an orange wedge! So now I have no excuses to practice being a bit more in an upwards position (not too much, though… my belly breathing gets bad when seated). I loved the piano! It will help me improve my fingers strength.
The day was hot (reaching the 100s), so I was kept in my nursery. No problem, Mommy makes sure I have plenty to do in there. The therapy games go on through the afternoon. At night we had another slumber party because of the heat outside! I won’t complain. I love having Mommy and Daddy in my room. Makes me sleep better as I feel much safer. I guess that’s why I’ve been in a happier mood… I love being around Mommy and Daddy.
THURSDAY JUNE 12
Mommy woke up early to clean up and put together the apartment. It was all so messy! I slept through the whole morning, waking up at midday. The heat wave goes on, so Mommy kept me in my room after bathing me and doing the morning treatment. A lady passed by in the afternoon, the nurse in charge of evaluation before the official nurses that will be coming to help Mommy with me arrive. No official date yet, they should tell Mommy next week.
FRIDAY JUNE 13
Aha! Friday 13th! I was told Freddy Krueger was around… Daddy went off to his courses and I spent the whole day taking it easy with Mommy. Therapist Patty is on vacation, and should pass by next week. The day was hot, but by night time there were thunderstorms! The light went out for some minutes, but came back fast. We were all packed in my room, because of the cool air and to play with me. Mommy read some books while torturing Daddy with the Spanish songs CD… That was FUN!
SATURDAY JUNE 14
There was a bit of commotion outside my room… The landowner appeared with his nephew to put up a ceiling fan, and boy, were they loud! What a racket! Mommy bathed me and gave me my morning treatment, and just dared to peek outside the room… She is allergic to everything so she basically closed the door so we both would be safe from dust. In the afternoon it was all done… The fan works, but not from the wall switch… Blooper? Oh, well… At least now I can fly off the nursery to the living room and not be fried in the heat!
SUNDAY JUNE 15 FATHER’S DAY
It was a typical Sunday, Mommy and Daddy were gathered with me the whole day. Since it was Father’s Day I was all dressed up in a pretty dress with Cinderella’s face embroidered in the front. Daddy played some in the computer, then watched some movies with me and Mommy. We were a bit sad that no one called or visited, but by now we are getting used to it. I tried to make Daddy feel special by smiling whenever he passed by me… Well, actually I’m always smiling whenever he is around. Yup, I’m a typical daddy’s girl. I’m very lucky to have him at my side most of the time. He is my favorite silly toy! :P
MONDAY JUNE 16 DOCTOR’s APPOINTMENT
What an adventure! I did not fit well on the car-seat, so the bucke had to stay unlocked. We were lucky the taxi driver said it was okay… Not the safest, but Mommy insisted we had to go because I had a slight reddish bump in my head that she wanted to check. So, off we went. The equipment behaved, and we arrived safely to the office building. We found the place really easy, and waited just a bit. When I was called, a nurse checked my basics… I am 29 inches long and I weight 24.17 pounds!
The nurse was really nice to me, and talked a lot with me. She really liked me, and I know she sent many blessings my way. Then the attendant checked me up, DO Salinas. I remembered her from the day I was discharged from PICU… Mommy asked about the creatinine, the reddish bump in my head and my shots. Luckily my shots are due when I am 12 months, they want me to stay off any medicine as long as I don’t need them, and the red bump seems to be some kind of fungus for which I’ll be washing my head with a special shampoo. My 10-month checkup was a success, nothing was found wrong with me. They were surprised at my lungs being so clear. Well, what did they expect? Mommy and Daddy take good care of me. They want to keep my lungs as healthy as they can be!
I got an appointment for next month, my diet was changed to fewer feeds per day to see if I loose a little weight since I’m off the charts (gee, am I Mommy’s clone or what), and an ophthalmologist appointment in November. Going back home was less of a hassle as the taxi driver loaded me with stroller and all as he figured out the car seat was a big problem. We got home in one piece… I tell you, I arrived, and as soon as I was placed in my bouncer I kissed it! There’s no place like home!
Just as we arrived the mail people were here to deliver letters and a box. I got some nice dresses from Ally and Tina. They also sent Mommy some stuff for the kitchen (now Mommy cannot elude cooking! LOL). Thank you guys!
TUESDAY JUNE 17
It was another long day. Mommy had trouble sleeping, and was in “default mode” for the whole day. Since it was a nice day she took me to the living room, where I was treated to some Princess sing alongs. I fall asleep by mid afternoon, as usual.
Daddy went to his daily courses, and arrived a bit late. Mommy had sent him on a special mission which he fulfilled brilliantly. When he arrived he sent Mommy to sleep, she looked beat! Well, actually she was… and she slept almost until midnight. She got up in time to watch Daddy do my before bedtime daily treatment. I fall asleep fast, holding on to my golden Sheepie.
WEDNESDAY JUNE 18
Helen, one of my therapists, came in today. Mommy was just finished with my morning bath and treatment, and flew me off to the living room. So, Helen stretched my arms and legs, and played with me. I was a bit sleepy, so by the end of the session I almost fall asleep.
Mommy placed me in the floor, and while I watched some Baby Einstein she also placed the sling over me. She put up the restraints Daddy got me, and so my arms are in the air! I played a bit with my beloved MissButterfly. I watched the sign language, the sky, and the farm videos today. So far I love sheep and cows and the stars.
The day has been very comfortable, and is getting very dark as well. I think there might be a thunderstorm… They are very common these days… I don’t get scared. Mommy is always around to protect me.
And so it ends another week review... My, I'm so young and yet I have so much to tell! And I do so many things! It's not easy being a diva!
Monday, June 9, 2008
SUMMER DAYS
Wow! JUNE is here! The year is almost at its bellybutton… So much going on so fast!Each day something new happens, and I see that indeed the world is full of wonders. I am so happy that I have Mommy and Daddy who love me so much! They are always taking care of me, always trying to show me or teach me something new each day. Sometimes they overdo it… But hey, they make my days so special and unique! I’m thankful to God for giving me such faithful guardians… And all I need to give them is a smile! Can you get a better deal? No way!
From before last week:
Here I'm taking a bath before the OT visit...
While getting some advise... Here Mommy is getting the OT exercises tips.
This is NOT as comfortable as it looks! Oh Dear!
Now to the juicy news. Here’s what has been going on for the last week, so you don’t miss any important thing!
MONDAY 2
The morning went as usual, with the difference that Daddy was not around… He began his job-hunting courses, and that will take 15 days! So it will be three weeks with no Daddy during the day. Just Mommy. Should I fear? :P
Mommy has trouble sleeping… she’s not used to the sounds of the street… And I don’t think she’ll ever get used to it. Me, gimme food, good music, and a good glow in the dark plush animal, and off to sleep I go! Well, she didn’t look too happy today, but managed to do my morning routine. Then the guy from UPS brought in a big package…
Turns out it was an A/C! Oh, my! That kinda change Mommy’s mood. She was worried about the heat, since I get heatstroke and these past days I’ve been complaining so much about the heat when it comes. So, thanks to Lynette’s gift I am the proud owner of a magical device that cools off my room! Now let’s see WHEN it will get installed… I’m still waiting for the ceiling fan…
The afternoon went smoothly. I watched Finding Nemo and Mommy did some scrapbooking. I think she’s finally finishing Year 2006. I can’t wait to see what she do with 2007, the most important year! (Of course, I was born! Duh).
TUESDAY 3
Daddy took off to the courses, and Mommy prepped my breakfast and my wipe bath. She made me look gorgeous! And then she went on to the daily routine, ugh! I thought I had skipped that torture! Oh, well… She says it’s tough love, that someday I’ll thank her for that… Well, that I appreciate doesn’t mean that I like…
In the afternoon, the owner of the apartment showed up to seal some wholes in the tubes… They are trying to close gaps so that a clever mouse stops its visits. I think it is a girl, it is really clever! LOL Anyway, Daddy arrived and he began to setup the A/C in my room. Wow! That really surprised me! By night, I finally slept like a baby! Well… No pun intended… I reminisce of my sleep at the Hormigueros house… Quiet col place with soft light and the humming of the A/C in the background… I miss that room… I miss having Mommy and Daddy sleeping with me…
WEDNESDAY 4
The day looked a bit murky. Mommy did the routine, singing aloud as she put the Canciones Infantiles CD and making me smile a lot. She bathed me and prepped me for flying off to the living room. It was then that she noticed her phone had two messages. She completely forgot that the OT was coming today. Helen had come upstairs and knocked at the door, but we didn’t hear anything… With the music and the singing and the suction machine noise it is almost impossible to hear a knocking… Mommy was pissed at herself, and worried that the OT would think she just didn’t felt like receiving her.
So she gave Helen a call apologizing for not hearing (Mommy also fails to mention she is a bit deaf… Oh yeah, she is VERY defective… but I love her much! ). Today I got no exercises and no playing with anything. I watched MaryPoppins and a repeat of the same sing along… Mommy was not feeling too good or upbeat. Daddy arrived and saved the day. He took me to my room, gave me the second routine and played with me for a while. Mommy was motivated to try showing me how to use the cymbals and that was FUN! Then to sleep…
THURSDAY 5
It was a cold day. Daddy went off to the courses a bit worried as Mommy was not feeling well. Nevertheless, she gave me my routine treatment, a wipe bath, and stayed with me in the room. As she made me do my exercises, she started fussing with my mobile. She ended up adding the finger puppets to the mobile, hanging them with fuzzy wire at a length that allows me to grab them! She propped me up so I would be able to touch them, feel them, watch them up close and personal each time they pass turning as the mobile spins… Way cool! Playing with that made the hours fly away!
I got mail from an old classmate of Mommy, Katherine. Her daughter saw my webpage and wanted to help me out. So they raised money for me, and send it to Mommy. Thank you both! Those funds will go to my savings account, I am keeping everything people send me so later on I can get the special stroller that I need, and other special things that will help me in daily care.
Later in the afternoon, I flew up into the sky to land in the living room. I was treated to The Little Mermaid, and then a Princess sing along. Daddy got Castle in the Sky so we all could watch it. I really liked it. Who knows, maybe I’ll be a Manga freak when I grow up… So far I love everything from Studios Ghibli. Spirited away was cute, as well as The Cat Returns, but by far my favorite from this is My Neighbor Totoro. TOTORO!!!!!
As the time for treatment was passed due by half an hour, Daddy went on to comply with it. With all the emotions of the day, I was beyond beat! And so I fall asleep really fast!
FRIDAY 6
The day was crazy. Half cold, a bit hot, then cold again. This climate is as unpredictable as Taz! Geesh! Mommy woke up as Daddy went away, and so she began my routine… backwards. She bathed me this time doing a rag/soap/water bath. Yup, its “A hundred ways to bath baby”… At least there’s something new each day… Then she gave me the vibrations/suction/coughing combo of the morning.
I expected the Early Intervention people today, but both were sick! And being sick means don’t you dare to put a foot in my house! Even less in my room! No sick people near me!!!! No, it’s not vanity or being picky… I may not look like it, but I am VERY fragile. My lungs would not be able to take being sick as easily as any other person. So, prevention comes before anything else. That and to keep Mommy from having a nervous breakdown. I don’t think she want to visit a hospital for a long, long time…
By midday I was ready to go! Well… It’s more like all dressed up and nowhere to go… But who am I to complain? Mommy exercised me, adding those new moves that the PT and OT suggested. Wheeee! Variety! And my ankles are not as stiff as they used to be, so maybe it’s all worth the effort. I played with the light ball, practicing the complex on/off lesson. It was followed by Tiger. And then by the sound-thinguie-booklet “Let’s get busy, Baby”. Geesh, like I’m not busy already… By midafternoon Mommy gathered enough strength to fly me off to the living room. This time it was a sing-along bash-party! I watched the Lion King’s, then all the Princesses, then Peter Pan’s… And to close the musical/visual stimuli I was treated to Fantasia! Oh, I LOVE Fantasia! I always smile at the dancing mushrooms, then the dancing flowers… the horse people, and of course Sorcerer Mickey (my old friend).
At night I watched some designing stuff with Mommy, and soon came the treatment/sleeping combo, courtesy of Daddy. Who says I don’t have a busy schedule?
SATURDAY 7
Mommy was cracking up the whole day… She didn’t sleep well last night because of so much noise, and a truck woke her up at 4:30am with its honking… She had a really bad morning, and the heat during the day didn’t help. Me, I hear nothing out of the ordinary thanks to the A/C. Ahhhhhh! This is the life! Nothing bothers me… I’m a cool cat, with my food and my exercises and my songs and my toys… I just missed watching my movies. Mommy didn’t want to take me out into the heat fearing I may overheat as has happened before… Especially since the temperature is REALLY high. But big deal. The mobile keeps me happy, and the music instrument session rocks!
During the afternoon I watched Mommy as she was messing with some odd tubes of paint… Turns out she was painting a poster for me. When it was finished I couldn’t believe my eyes! Ariel and Tink were together, under the sea! That was so cool! I love how mommy always do things for me, especially something different each day. Takes the monotony out of my routine.
At night, Mommy had an idea to be able to finally sleep… She asked Daddy to take the bed from the sofa sleeper and put it in my room’s floor. So, finally my wishes came true, in an odd way… Mommy and Daddy are sleeping in the floor of my room, so now they can serve me better. Yup, now they will have to put up with all my cyborg sounds: beepings, alarms, everything! I love it when a plan comes together! And with the weather forecast, this may be a trend that will last for the whole summer! It’s a good deal… Total service in exchange for cool air and almost soundproof environment.
SUNDAY 8
Daddy woke up to feed me, and then to do my morning routine. Mommy was feeling lazy and tired, but at least she had some sleep… The first REAL sleep in weeks! Hmmm, I foresee that the bed slumber in my room will be somewhat permanent… LOL
Since the heat went on during the day, Daddy kept me in my room. While Mommy checked her mail, he took some of my books and read them to me. I love the ones with sound. Then Mommy got into the vibe and put the CD’s that came with the books from Puerto Rico… Oh Dear! Turns out all songs were the same ones as the ones in my favorite Children’s Songs CD… Just that they were so slow and boring… and played with the “cuatro” guitar in the background. The ones I like were the ones in the games book, where the Pon, Pon Pon and the Lobitos and the Tortitas made me laugh a lot. Daddy ordered some pizza and we all had a picnic under my crib. It was a really fun afternoon.
At night, Uncle Steve called and talked to me. I smiled, his voice always make me smile. Daddy did the second routine treatment, and off to dreamland I went… being so happy as I knew Mommy and Daddy would be with me, watching my dreams… Literally.
MONDAY 9
The heatwave goes on. The extremes are very annoying. Since we are all used to one constant throughout the year, we feel everything at an exponential base. Daddy went to the job hunting course (week #2). Mommy spent the morning cleaning up and getting weird calls from local marketing people. No plans for the day… Just me, sleeping in my nice, comfy room while everyone else fry out there were there is no A/c… :) I foresee Mommy scrapbooking under my bed while I sleep… LOL
10-4
Sunday, June 8, 2008
Deedee in June's Sky
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This is a cute starry setting, so Mommy couldn't resist... Yup, she's a sucker for stars... Click on the biggest stars to see a collage of some recent pictures.
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