WE ARE IN NEW JERSEY!!!!

After so many storms, and what seemed an endless wait, we got the GO! from Cathastrofic Funds. So we got the air ambulance. The news arrived at Wednesday night... By Thursday afternoon I got a call from the hospital saying Deedee would be transferred any minute now... And on Friday Morning, at 11:00am, baby was put in the jet and zoomed over to Newark!

THE TRIP
Mommy reached the hospital after 6am, and baby was prepared for her big day! Everyone passed by to say farewell to our DeeVa, and it all got very emotional. The people from the air ambulance company arrived, and as baby was placed in the gerney she went into a shock... She just stared straight ahead into nothingness, becoming non-responsive to her surroundings. I noticed that as we were in the ambulance, just before we went in the jet. It freaked me out. She would not follow with her eyes any movement, or show sign of being aware... not even showing a grasp. She stared to the front, without blinking, without any movement.

Monitors showed no signs of trouble, so we went ahead and went in the jet. It was a now or never moment... The four hours that went afterwards have been the longest hours of my life. Deedee was unresponsive for almost two hours. Then she started blinking a bit, and moving her fingers a bit... but very lightly. The nurse put Deedee in my arms, so she would be close to me in the rest of the journey until we reached ground. Deedee would not fall asleep at any moment, even if she wanted to... her eyelids kept closing while she fought sleep off. An ambulance waited for us, and so Deedee was moved very quickly to the hospital.

NEWARK ARRIVAL
We arrived at 4:30pm at the University Hospital. Deedee kept on looking shocked and being stunned... When she reached her assigned room and was placed on a bed she looked over at daddy, then at me, and smiled. Finally, a sign of actually acknowledging us! I felt sudden relief! So... Baby was checked, her tube was changed to a smaller one, medicine was placed to lower the throat swelling, and she finally went to sleep a-lot, for the rest of the night... We filled up the admission papers, and stayed for a while. After being sure that everything was fine, mommy and daddy went to their new home to FINALLY rest. It had been a long, taxing day! And still, everything was surreal, unreal... you name it.

So the new chapter on Deedee's saga begins...

They were going to try extubating her today, but decided to give baby more time to get used to the new surroundings, the new staff and so she is completely rested. Extubation has been scheduled for tomorrow. Today she has been sleeping non-stop after watching Fantasia 2000, and she seems calm. Her usual charm is back to normal. Many prayers keep going her way, so there is success in our efforts for her. Fingers crossed on that, and complete faith on what God will do with her in the end.

It all has been His will, what seemed impossible was delivered flawlessly into our hands... Chapter one was closed feeding hope, feeding trust in the Allmigty, feeding belief in what we strongly belief was the only right choice for baby. So many hands have helped in the way, so many people gave us strenght and made us smile through our hard times! We are grateful for everyone who helped, for every prayer, for every kindness. It all has been a collective effort which demonstrated that there are good things in life, that miracles do happen, the good can win over the bad.

We want to thank family and friends for their ongoing support. We want to thank the Rio Piedras's Pediatric Hospital PICU staff for bearing with us and trying out a different way (special thanks to Dr.Diaz, Dr.Garcia, Leslie, Idaliz and Wanda... We will NEVER forget your dedication, your help and your love for Deedee. We made it through thanks to you guys!). And we thank God for allowing us to give Deedee a chance for a better life.

Chapter Two begins now. Let's see how the story unfolds... Step by step we keep on climbing the mountain. day by day a new hope rise.

10-4

A Strange Visitor...

In the middle of the stress about the transfer to NJ and the forced waiting game, DeeVa got a visit from an infamous mouse... Baby was curious about him, looking at him with haunting attention. She atually started crying when he went out. Hmmm, demanding attention? Nah! Yup, seems baby really has all the basic attitudes to conquer the world! :P Mommy wondered why she wasnt scared of him, and then later in the afternoon she realized why while playing "Fantasia"... Of course, the Sorcerer's Apprentice... Mickey Mouse is there, as well as in the intermissions... All in all that was a happy intermission from the overall "what next" mood.

Later on, Daddy called and got the news first from DeeVa's assistant... Baby took possession of the phone to listen to Daddy... She was quite excited about the mousy visit! But then, minutes later, she realized her big mistake... DeeVa says it all with her eyes! "MommySlave, PLEASE! MAke him stop singing! PLEASEEEE!!!" And Mommy knew what she was talking about, Daddy was on speaker... "Oh, Dear!"

Don't fail to notice the Teletubby effect of the bow on DeeVa's head! See? Teletubbies... Resistance is futile! (And it all began thanks to the StPatrick's day green bow, courtesy of a funny insane RT... How come I didn't think of that?).

The news for the day: Catastrophic Funds got the fax from University Hospital and next Wednesday will be the evaluation. Until then, try to relax and release... We have come this far, things won't stop now. People, send us positive vibes, and pray a lot for all of us, as well as for all other kids who are in intensive care and have missed many holidays thanks to that. May them all go home, healthy. May God's gifts of mercy and healing fall upon them all.

This is Holy Week. Remember so. Remember God's sacrifice to redeem mankind. Take a moment to think about it, and give thanks for all the blessings you have. We know we have many blessings, our greatest one being our DeeVa who is still at our side, bringing so much warmth and love into our lives! Easter may be fun because of funny bunny eggs and wabbit furs, BUT that is just a playful addition to the important main event: The Resurrection of Our Lord Jesus Christ! Let your kids know that before they go egg-hunting. The most important things are invisible to the eyes, but touches the soul.

10-4

The DRAMA Continues...

We got the apartmet, we got University Hospital of Newark saying yes to our DeeVa, and today when we contacted Catastrophic Funds to coordinate the air ambulance, they say that the case was submitted to their comittee and was denied because there was no hospital accepting Deedee and now it must be re-submitted to the comittee next Wednesday to see what they decide. ??!!

We dont get it. They had told us, back on February 19th, that the only thing they could give us was the air ambulance one way ticket as they could not cover anything else for our case. That was enough for us. We believed their word that they would do the transfer. Now, this... Aparently someone didnt really thought we would get a hospital without having insurance, and just dismissed us with a word of hope that would take us nowhere anyway... I would like to think that is not the case. Seems Mark and me have the same bad habit of believing people. We are too naive, still at this stage of the game.

So... Now what? We have to wait for our hospital to try to move things, or until next Monday to speak with the Catastrophic Funds director who is not available this week, and/or wait until next week's Wednesday so the comittee gives its veredict of granting the air ambulance... or not.

After all this work, after all this wait, this happens. It was the first stepping stone we needed to do before everything else, and we trusted their word about the air ambulance... It is all a bad cruel joke.

DeeVa has been 3 months with 2 days at intensive care. She has been intubated all this while, which is NOT good. Days cannot keep passing by... People dont seem to get that if she's at intensive care it means she has a life or death situation. Her illness is fatal and must be assessed inmediately to at least try and grant some hope for her. SMA has no cure, we know. It can only be treated... And we want to treat it so Deedee has the best options at her grasp within her particular circunstances. We want her to have a future, even if it seems to be just a fantasy or an ideal. We will not treat her as if she had a death sentence because from the moment we are born we are all going to die. It is that simple. Only God knows when she will go to Him. In the meanwhile, it is up to us to make things happen for her, so she truly has a chance.

It is frustrating how people dismiss things as if they were everyday situations, as if what we want was only a product of fickleness. We wonder what they would do if it were their children who needed the help... The help that a government agency made just for that can give. We hope that it all will work out in the end, that this is just one more trial of our patience... May God grant wisdom to the right people, enlightening and unhardening their hearts. And may God give us strenght and serenity for the days to come...

In the meanwhile, baby waits for whatever is gonna happen to her... Always smiling with innocent glee, always alert to everything and everyone, always eager to simply live. What a lesson to learn from one so small!

10-4

Hospital in Newark... Check!

Today Deedee became 7 months old. In time to celebrate St. Patric’s Day! Yay!

Today during the afternoon Daddy called Mommy with great news: The Newark hospital said yes and will start contacting the island’s hospital to make the transfer ASAP. So, tomorrow morning our hospital has to contact Catastrophic Funds so they pay for the air ambulance needed for the transfer. Holy Week brings on some miracles with it. Finally, the light at the end of the tunnel is in our faces! Hopefully by the end of the week the family will be reunited again.

Deedee was crying nonstop today. Perhaps it was because of the bow in her head, perhaps she was just demanding attention, or perhaps she’s missing Daddy like crazy. A bit of Fantasia and some soothing words by Daddy himself did the trick. She was sporting that intense stare that is her trademark… And being lovely while bearing with everything. Our DeeVa is a strong one, with a quick-to-anger temper, and a soft soul. She’s the best of both worlds. She's been stable, but her secretions are changing color to light cream which may forecast another bacteria... Oh, we certainly hope she put herself together! Another bacteria would mean 15 more days of antibiotics... We trust things will move fast, so her needs can be adressed and treated, presto! God has helped us go this far, He will make things work. We know that much.

Daddy has done a good job out there. We can't wait to be with him again. These days have been sad and lonely for Mommy... But no pain, no game. Everything will be fine in the end. Just a little more time...

10-4

Apartment? Check!

Yay! After much ordeals, Daddy got an apartment. Meaning we finally have an address to process baby’s papers at the NJ hospital. Meaning we are one step closer…

Tomorrow morning Daddy will give the hospital the information they need, and we hope nothing else will come up on that matter. We are crossing our fingers, keeping our faith on a positive notice very soon.

Daddy says the owner of the apartment is a pastor who is also a community leader, leader of the night watch, teacher by day and volunteer by night. So we know that we wont be so lonely over there, and we will have people for guidance. The pastor may be able to help us get a job soon.

At the last minute, and answer... THE answer. God keeps on sending out angels to help us.

Meanwhile, our DeeVa was quite happy today, granting a splendid smile to anyone who visited her. In the afternoon, one of mommy's friends from work (Lulu) passed by to give some TLC to baby. Much positive energy helped changed the day's outlook. By nightfall, being playful and then resting a bit while Daddy gave Mommy the good news... talking to baby via wireless... Baby searched the room for Daddy, smiling while listening to his voice. Oh, she knows us by heart. The parking guy send his support to Daddy, as well as the Gatekeeper. Everyone has been sending good vibes to baby and to the cause.

Everything will be fine in the end. We have put all our trust in God's will.

10-4



10-4

Time is Running Out

Baby quietly awaits for her fate to be chosen… Time runs out and choices creep upon us. Daddy is in New York, depending on his family to get to New Jersey… Which is not something easy or as effective as he expected… Three days have been a complete waste. Baby’s paperwork for Medicaid and Social Security needs to be filled… Baby’s hospital papers need to move. A dwelling must be found, a job must be hunt… And we expect all this for Friday news… Right…

Over here in the Island of Enchantment the pressure is stronger, and even the seconds weight a lot. Mommy is going insane knowing all she could do over there… but being tied up because baby needs to have someone at her side. She has spent morning and nights on the Internet, browsing for an apartment and for jobs. She’s been handing them down to Daddy so he has a certain list of who to call, so chances to get a solution increase. What we both didn’t count on, and didn’t knew as it is not a custom in PR, is that they do job checks and credit checks for granting an apartment lease. Dealing with realtors doesn’t help our case in anything, as they wont actually see the situation even if we explain it in a lovely Powerpoint presentation… So we have to aim for a low rent to actually get something… if, and only if, anyone would help us given the extraordinary situation… It is all hanging from a thread…

Baby’s fate depends on Daddy’s wit and ability to move and perform the miracle. He’s alone over there… But he has direction and faith. He has Mommy to guide him, and God to open doors. He needs to trust this and believe this with all his heart. God will show him the way. All is in His hands. Let’s hope that Daddy throws away self-doubts and fears. This is no time for pondering or questioning. This is the time to do, with blind faith in our goal… in doing what is right… in believing we will prevail after the storm fades away. Actions fueled by will, will fueled by courage, courage fueled by belief. Period.

May God grant us serenity, wisdom, courage and strength.

In the hospital, Deedee has been getting many visits from her service entourage. That is great, at least during daytime she is not alone and she smiles all the time. Mommy got her a shea butter lotion, as her legs looked a bit dry. A diva cannot afford to get chipped skin! No way! She’s aiming for legs like Tina Turner’s… So, baby steps… literally… MrCornellius was the preferred toy today. He was spinning before her, and she stared at him in awe. Fantasia2000 is the mandatory movie nowadays… relaxing enough for baby after she makes her daily exercise routine. Yup, she falls asleep by the time Donald Duck gets the animals in Noah’s arc…

Baby keeps on at 21% oxygen support, pneumonia is out, and keeps dreading nose suction. The food line remained stopped for almost two hours, but then the diet returned to normal. Hey, a diva’s gotta have her food! The coughing/vibration sessions were a bit lame… Why they don’t listen when you say that baby has a plug? That is very, VERY annoying! And by the time Mommy left, Deedee had been changed, suctioned and pampered with much deserved love.

Another day… The countdown keeps going… Tick, tock, tick, tock… (There must be an alligator in the house)…

10-4

One Step Closer

Wednesday was Moving Day for our DeeVa. At least within the hospital. As we arrived she had been taken to another room that has more space and is a bit more isolated from the others. The first impression was not very polite. We just envisioned a room used for storage being cleared so baby can stay somewhere within the inward boundaries of intensive care... a vision not helped by the cleaning people not going into the room and the A/C crew doing their job while cutting through the fiber-glass ceiling of a room of a respiratory illness patient with the patient watching. Not so funny at the moment. We were very upset. That, and watching the area at night being so isolated didn't help our nerves or our trust in the place. The alarm for oxygenation was very low, and since it is a closed room nothing can be heard from outside. Plus no visible camera shooting baby. Baby would have complete silence since there was no CD or DVD player around, which we dont like as she is used to music: Sounds make her feel safe, silence makes her feel lonely and uneasy. The whole combination was unnerving, and we canceled our plan to go to our hometown to finish moving. We didn't sleep well that night.

Thursday we arrived trying to be a bit more open minded and less defensive about it all. So instead of getting angry we started joking about it all. At least our paranoia levels went a bit down. I took my CD player so baby can listen to her music at her usual continupus play mode (reminiscing home). The TV in the room has VCR, and Daddy was upset about it, but never fear! I'm ready for anything. I still have my VHS movie collection (yes, I'm a Disney freak, so what?). Baby will have many hours of entertainment... no problem about that. The cleaning crew finally showed their noses, so no... it's not a warehouse and we dont have to call maintenance :P And the window is reasuring in case there is a fire and we must hurry out. Nah, the day/night feel will be good for baby. Being in a closed room is the pits especially without awareness of time... Last perk of the new room: It is in front of the RT desk, so they are literally accessible if they are not servicing anyone else. So we felt a bit of relief (after baby seemed content with everything). After the visit, we decided to head to auntie's house so Daddy could spend some time with his other daughter, Mandy. We have been talking about the travel to NJ and he knew it was certain for the weekend... with uncertain way back. He wanted to see her just in case.

On Friday we cleared some of the mess at auntie’s place in our hometown, as well as Daddy went to get Amanda so they would have some quality time together. We were to get a plane ticket no matter if we had to pay, as the time at the hospital is shortening (DeeVa's pneumonia is almost over and we need to move fast if we want to take her to the States without a tract). We had no idea that the Mayaguez Airport was in such bad shape, with no flight booths left. I mentioned that we should get the tickets online... Daddy got a call from his friend from work saying the company will pay the plane ticket and that he should go to the factory so they could browse for it online. Great minds think alike! In the afternoon, we got the plane ticket so Daddy could go to New Jersey… Courtesy of Cordis LLC, who donated this for our beloved DeeVa’s cause. Night crept upon us, and we faced the road once more... after all, we had to go to our beloved DeeVa! We reached the hospital in time for Daddy to spend a bit of time with baby before his trip at the wee hours of the morning. It all has been speeding up… Memories are hazed by so many events one after the other, at all times…

Very early in Saturday's morning, Daddy went on to accomplish his mission for Deedee’s sake… At 3:25am he took a plane to get to New Jeresey. He arrived over there at 6:25am. Now, he needs to fulfill his mission: To find an apartment for all of us. To get to the hospital and fill out paperwork so we finally get over there. To get a job so one of us has something to keep us alive. All while Mommy stays with baby at the hospital. Hopefully everything will be done within two weeks.

It’s been just one day, and it has been really hard not having Daddy around… Baby misses him badly, and Mommy misses him too. It’s sad and hard when we are forced to do things separate ways, but we do what we have to… Happier times and happier memories will come after so much hardship. Right now the important thing is giving it all we have to give Deedee a chance for living to the fullest. What is best for baby will happen, we have faith in God and trust His will.

Since baby’s new room features a TV that has an attached VCR, I took some of the old VHS movies that I still had so Deedee can be entertained a bit longer. Today I showed her Fantasia2000 and Beauty&theBeast. She's definitively into music. She loved the synchronicity between images and music, and was entranced by the triangle butterflies and the flying whales. She laughed a lot during B&B songs, especially “Be our guest”. After all that visual excitement, played some Sound of Music songs, followed by Lord of The Rings. Daddy called me up, and I put the cellular phone next to Deedee so she would hear him saying hello… Instant smile! I thought she would not recognize him since he sounds a bit odd on the phone, but she did. By the time I left, the Baby Einsteins hits were playing… and baby was getting ready for a nice nap after taking some coughing therapy. Today was one of those days that I would have stayed the whole night with her…

Outside, met the lady with the other SMA kid who was supposed to go out of the hospital like a month ago. She’s been having issues with the medical insurance, and then with the people in charge of the public residence where she lives (she needed permits so she could have an electric generator for the baby’s ventilator and other equipment). The good thing is that now there will be a basis for babies with ventilators on public housing projects. The bad thing is everyone making things harder than they already are (the usual).

Hopefully I can contact other moms within the island…I need a list of babies/kids with SMA so I can contact them with FSMA information. I want to begin a chapter of this organization within the isle as I realize that there is deep need for information about this illness for both parents and healthcare professionals. The main problem to get the information on the parents of SMA kids within Puerto Rico is the law that forbids medical information disclosure… I know most people wont mind, but the law is the law… So I’m hoping that they can reach me by word of mouth or that some therapists or doctors passing along my contact info so they reach me if they are interested in the SMA support group.

Families of SMA is for neutral information (facts about all treatment alternatives for SMA, tract, non-invasive, equipment pool, doctors lists, and research), parents support, and funding SMA research (like the ongoing Project Cure SMA). My being interested in doing a PR chapter has no value if no one else is interested, so I hope others join for this effort. I need professionals who would like to be part of all this. I’ll send out letters with information about this later on, after Deedee’s fate is decided. Right now all my energy should be focused on our DeeVa. Next in line is the FSMA PR Chapter.

Wrapping things up: Daddy is in New Jersey making things more tangible for the fate of baby, Mommy is plotting survival on NJ or in PR, and DeeVa is flawlessly behaving as a "super model in training" captivating everyone with her lovely eyes and her smile... while missing Daddy... Our hearts keep guiding the way as they are filled with love and hope.

The show goes on... Woah! We KNOW drama!

10-4

Uncharted Lands

The news so far... Some good, some bad… All is a big challenge.

We cannot process anything in NJ hospital if we don't have a local NJ home address. The plan now is that Daddy will go to NJ this weekend, so he can get a lease on an apartment, and go next Monday to the hospital to fill out paperwork in person. It is the last chance to achieve something else than what we already know that can be done within the island. We have an acquaintance that recently had to move over there in order to give his daughter another chance for life, and he will try helping us out in the apartment hunt as he already did so two months ago. Hopefully things will turn to our side. If anyone else know of a place within Newark or have any other ideas that could help us, feel free to email us. Many minds together can think better than two weary-drained-tired minds. We are also looking up jobs in Newark, any help on that will be deeply appreciated. Obviously one of us will have to stay at home with baby, but the other needs to get a job… pronto! Fingers crossed about it all.

Deirdre is going back to her lower parameters, little by little. Yesterday night we left her at 25% oxygen. Her secretions are thicker, so we have to watch her for plugs that get stuck letting her oxygenation go down and crazy. Now they are trying vibrating her while coughing her… I am not convinced by that technique as it wears her out too fast, even if it is true that it makes more secretions come out while suctioning. I guess I am more into following steps, and the coughing then vibrate then position-drain then chest-tap makes more sense to me. Slower but more certain, doing things too fast may cut some time momentarily but may create other headaches in the long run. For now, we are just making annotations on what works and what doesn’t, speaking up when something doesn’t seem right and fine tuning the power of observation. Thickness of secretions makes it mandatory to suction her almost hourly, which we are doing ourselves while we are at PICU.

Baby liked The Little Mermaid. So now it’s a movie session of Nemo and Ariel, back to back. Deedee seems to prefer them to other cartoons… Must be the music. We always had music playing in the background, even before she was born… So music is a big part of her, bringing soothing comfort while she’s asleep or while she’s alone. The Sound of Music and Mary Poppins follow in line as her favorites. We leave Disney Lullabies or Baby Einstein instrumental music when we go away, as she used to sleep with them playing at home. It was that, Harry Potter or Lord of the Rings music scores.

Puppets made their way to a washing machine, thanks to one of the RT’s making sure that no bacteria stays around for a third round. So right now baby has only a mirror displaying her evil alter ego… Yeah, there is that baby stalker that keeps popping up in the mirror-window… And won’t stop staring! Besides the hanging mirror creeps the musical Octi, whose tentacles go wild with Caribbean music each time the social worker visits our small diva. Hopefully Deedee’s entourage will be back within two more days. The bed looks so empty and devoid of color without the plush dolls… And we know that visual stimulation is a must so our DeeVa stays interested, entertained and happy… With who else can she talk at night, gossiping about everything that goes on? We’ll get her a new friend today, so she can have some comfort in the meantime. Being without Bear-ly-Princess has been a big impact on baby’s routine!

So… Hopefully a positive resolution lies ahead. Daddy has a big mission ahead of himself… and Mommy will have to cope with: “Meanwhile, in the isle of enchantment…”. If baby keeps on getting better, then perhaps everything will fall into place soon. We need to solve the complete puzzle within the next two weeks.

Keep sending on prayers and good thoughts! Miracles happen everyday, everywhere. God is very busy, but very diligent. He never fails. And even if we drift through uncharted lands, we shall not fear for He guides us with His Light and His Love.

10-4

STILL SWIMMING...

No news about the transfer. The only news is that Deedee has pneumonia, again. She's been on antibiotics, which were not working at first but finally have " kicked in". She was really happy to see us today, granting many wide smiles and being quite playful. Auntie Nita passed by with her hubby and her other mom, and so the trio got to see baby. Yesterday Deedee's godparents passed by to spend some time with her after midday...

At least our diva is getting some deserved attention during her sick days. We wonder what she might be thinking of all this... of the change on environment as its been more than two months of her being in intensive care... We wonder which memories will remain in her brain when she is older... We wonder what will happen next...

As Dori sings at all times, "Just keep swimming". We are all still swimming through unknown waters brings on unknown challenges... But even if we tire (and we are really tired) we won't give up on our DeeVa. We know the end of the tunel is near, and that a better future lies in the end of the the riverbend... So... Let's keep swimming, even if the way is long if we dont stop we will make it. Love fuels our actions. God guides our path.

10-4