We need to move ASAP

The news: WE NEED TO TRANSFER DEEDEE TO NEW JERSEY WITHIN 3 WEEKS OR THEY WILL JUST TRACT HER.

So far: They are playing with us in the hospital. Yesterday, the 28th, they gave me a notice from DrBach that he sent on the 22 asking them what we will do over there without medical insurance to cover anything in the hospital or the transfer. And so the hospital automatically think that he wont receive her. If I am to transfer her they gave me 3 weeks to do so, or they will simply tract her. Period. That they have done that for 30 years, it keeps the children alive long enough and is the only method known in PR. That I wont have the facilities or help for anything else. I spoke with DrNavado at NJ, he says he wil receive her and is surprised at the hospital's attitude... Oh, well... He is to send an email saying that, but now let's see if they feel like reading it over here, and like showing it to me.

So I have 3 weeks to raise the $25,000 for the transfer, and to find out of how Deedee can get medical help/aid/whatever in NJ when she gets there. I am trying to contact the UMDHNJ social worker, Esther Mesa, so she can try giving me some light on the matter... I am to try refinincing my house to get Deedee out of the island. She has no further hope in here. And I am not turning back, we plan to get to NJ to stay, if God wills.The people who are in power and who could help just wont help. Everything is a big NO thrown in our face.

I just got a call from the medical equipment rental asking my adress so they deliver and setup things in my house... because patient should be out of hospital in 2-3 days. (???WTF!!!) I asked them how that was possible when she is at PICU has not been extubated and they are waiting on the cough assist to try it, so she is transferred to NJ... They have not called back yet...

We are getting quite desperate... I am trying my best to stay focused... People, pray a lot for us, so we have wisdom, a clear mind, and the strenght to go on. We need solutions and action, so we are working towards that end. I am quite dissapointed at the lack of interest in local hospitals to get to know the disease for real and to know the ways to deal with it keeping quality of life. Tract or no tract, the cough assist is key in the treatment and they wont acknowledge this. I have given them all paperwork, contacts with doctors, anything so they can have evidence to do this... And only one doctor, DrDiaz, showed enough interest to at least try it all once (the once that will happen by this week's end IF the cough assist appears!). But he is not there constantly, because they rotate the head doctors every week... And this week I was told things very clearly: Get the transfer NOW or never. 3 weeks...

I contacted Cathastrophic Funds as we have gathered all the paperwork. We were told they are not giving dates, all is stopped, and we were placed on a waiting list... That they may start giving dates within 2 months... I ONLY HAVE 3 WEEKS! It doesn't matter, as there are other cathastrophic cases in wait for the same reasons...

I'm selling my house at Hormigueros. If anyone out there is interested, please let us know. Also, donations can also go to my paypal account hivequeen2000@yahoo.com, or to PO BOX 456 Mayaguez, PR 00681.

Someone got free airplane tickets for Mark and for me. They just need a date, we are working on that. Mark may need to go before us to fill up paperwork in NJ... We don't know yet. Now what we need is to get the money for transferring baby, which must be done in a medical airplane.

Pray for us so we keep wisdom, courage and strenght for what is to come...

10-4

Keeping on the fight

The Baseball/Softball Tournament was a success. I had no idea that in such a small community so much could be done. Zenaida and the community of La Perla are impressive troopers. They spent the whole day, from 9am to 12am… more than 12 hours… working non-stop at the place, selling food and drinks. They have been moving during last week, visiting people, asking for donations at houses and at traffic lights. The A-Team has been Zenaida and LightShadow, of course with their loyal followers. We can’t thank them enough for their efforts: Zenaida and her community didn’t know us at all, and still, they have given everything to help us out.

LightShadow as the SuperGodmother has moved things a lot, fighting the system and receiving hardballs sent to her arm… Deedee must be very proud of her basic team. We are trying everything, everywhere, as fast as we can… We know that things must be moved fast, because the sooner the better. We need to make sure that her treatment is started the right way, and that the follow-up continues that.

Today I called the government office for citizen service at La Fortaleza, as I had received an email to do so. They will pass note to Cathastrophic Funds so they are very aware of their much needed help. We already have most paperwork for the Cathastrophic Funds office, only two more to go. I should be able to call during the afternoon to make the date.

Yesterday we spoke about our case, asking for help, at the Fatima Mass radio transmission on 990AM. Also, El Nuevo Dia published our case in the SOS section (p.85). Last week I was interviewed in WAPA’s news by Leslie Cruz. Hopefully I’ll get a copy of that interview to post it later on…

We went to WORA on Friday, so information about the account and Deirdre should be passed locally on the western news this week. We spoke with El-Vocero and they are waiting for our next activity’s date so they print it along with the news. Hopefully someone will get us a contact for Univision, Primera Hora and radio contacts.

I sent out email for many government agencies and foundations both local and in the US. Most have answered that they cannot help, as they fund research not individuals. But we will keep on trying, SOMEONE out there must be able to help.

The next step this week is to get private schools involved. I know that students can help a lot as they actually have the time and energy to perform fundraising, especially based on the values that they are taught. Hopefully that will help.

We are trying to create other teams to work in other towns. Lajas and Sabana Grande are covered by Zenaida’s crew, but we need workers in San German, Cabo Rojo, Mayaguez, Hormigueros, Mayaguez and Anasco. We need team leaders for each town, in which we can delegate local fundraising. We need to ask Club Exchange, each town’s Lions chapter, perhaps the National Guard, the Catholic Church, and other organizations and businesses. We need hands as committed as the ones in Lajas/SabanaGrande.

So, now to the DeeVa status. Deirdre was smiling a lot on Saturday, maybe too much. Seems she lost that energy yesterday, as she was quite grumpy on Sunday. It took her more than two hours and some tickles from the vibrations machine to make her smile a bit. I know what is in her mind, she misses DaddySlave. She has not seen him for four days, and she wants his attention… period! He has been off in Mayaguez helping with the fundraising, helping at the Tournement, helping delivering papers to the right people… Today he should travel over here at night, to at least see her before our pass is over.

Besides Deedee’s Daddy-Blues she keeps on enduring, keeping herself stable while using her intermittent oxygen. The respiratory therapy keeps her making happy bubbles with her nose and her mouth. Some physical therapists are more adept than others, and luckily yesterday there was the adept/happy team that kept trying to make her laugh even through the uncomfortable suctioning sessions. This weekend I’ve found that they have been using the foot/hands bracers for helping with her joint positioning, which is good (I have been doing that the whole week long).

Upon arrival, I put our DeeVa to do her daily exercising routine, performing TioNovel’s favorites followed by Strawberry Shortcake’s Album of Exercises and Happiness (if you remember what THAT is… El Album de Ejercisio y Alegria de Rosita Fresita…my, you are ochentoso!!!), ending up with the She’s a Maniac special. Then she rests while a puppet session takes place, songs fill the air and eventually she falls asleep (three hours later). At least her fun never stops… even while bedridden. And that is good.

She has high spirits, high disposition and high will for staying with us… So she fights with all her strength. She has shown us just how much she loves us, and so she inspires us to fight for her… everyday. Step by step the mountain gets conquered. Step by step.

10-4

Tournament of Softball & Basketball for Deedee

Yes, it's tomorrow during the day in Lajas, PR. I was unable to post it before, lack of time. But at least here it is! Everything consumed there will be for Deirdre Medina's cause. If you have a team, let the contacts know. Thanks!

The news so far:
TODAY: Will get the affidavits for the bank account and for Catastrophic funds. Will try visiting the mayor’s office in Mayaguez and Hormigueros. And will go back to San Juan to play with Deedee… The action never stops…
Tomorrow will be the Tournament, and on Sunday we have an appointment at Fatima's Church.

THURSDAY: Press interviewed us during the morning. Put together all of Deedee’s documents and listed what is left to be done. At the hospital something went wrong in the afternoon, as I was not allowed in for almost an hour. It is not clear if it was due to a mistake or an accidental thing, but baby got extubated and they ran to intubate her back. The signs of the sedative wore off around half an hour later, and soon baby was playing with her Bear-ely Princess. The Cough Assist has not arrived yet.

WEDNESDAY: We stay at Mayaguez almost for the whole day gathering paperwork for Deedee. The wait at the med card was extremely long, almost three hours, to get the letter saying they won’t cover the expenses… Oddly enough, the government offices we had to visit were quite fast. Finally, went to my workplace to write some mandatory letters, leave things arranged just in case, and leave the flyers. Went to San Juan to see Deedee, arrived at 8pm, but at least saw her and played with her for an hour. She was quite happy to see Mommyslave. :)

TUESDAY: At the hospital, the guy in charge of the equipment Deirdre needs met with us telling us everything had arrived and was being tested… Everything but the Cough Assist. They are STILL trying to get it within the island… I foresee this will arrive next week…

HELP NEEDED for DEIRDRE VALERIA!

5 months baby DEIRDRE V. MEDINA needs your help!
She has been diagnosed with Spinal Muscular Atrophy and needs to be taken to the United States for proper Non-Invasive treatment. The medical insurance does NOT cover any transfer or hospital expenses withing the US Mainland, so we need your help. The funding account is at Banco Popular of Puerto Rico, checking account # 041-473272

What is Spinal Muscular Atrophy (Werdning-Hoffman Disease)?

Werdnig Hoffmann disease is a type of spinal muscular atrophy. It is a rare, inherited progressive neuromuscular disorder of infancy characterized by degeneration of groups of nerve cells (motor nuclei) within the lowest region of the brain (lower brainstem) and certain motor neurons in the spinal cord (anterior horn cells). Motor neurons are nerve cells that transmit nerve impulses from the spinal cord or brain (central nervous system) to muscle or glandular tissue.

Approximately 80% of SMA falls into the severe category (SMA1). Infants with SMA1 experience severe weakness before 6 months of age, and the patient never achieves the ability to sit independently when placed. Muscle weakness, lack of motor development and poor muscle tone are the major clinical manifestations of SMA1. Infants with the gravest prognosis have problems sucking or swallowing. Some show abdominal breathing in the first few months of life. Muscle weakness occurs on both sides of the body and the ocular muscles are not affected. A twitching of the tongue is often seen. Intelligence is normal. Most affected children die before 2 years of age but survival may be dependent on the degree of respiratory function.

For infants who appear to develop normally during the first months of life, muscles of the pelvic, trunk, and shoulder areas may initially appear to be disproportionately affected. With disease progression, diminished muscle tone and weakness may gradually spread to affect almost all voluntary muscles, with the exception of certain muscles controlling movements of the eyes. Intelligence is NOT affected!

Infants with Werdnig Hoffmann disease may lack head control, may be unable to roll over or support their weight, and tend to lie relatively still, with little or no movement (flaccid paralysis). In addition, they may develop difficulties sucking, swallowing, and breathing; have an increased susceptibility to respiratory infections; or develop other complications that may lead to potentially life-threatening abnormalities within the first months or years of life. For infants who appear to have normal development for several months prior to the onset of muscle weakness, the disorder may tend to have a more slowly progressive course.

Werdnig Hoffmann disease is inherited as an autosomal recessive trait. Molecular genetic testing has revealed that all types of autosomal recessive SMA are caused by mutations in the SMN (survival motor neuron) gene on chromosome 5. Deletion of the NAIP (neuronal apoptosis inhibitory protein) gene that is close to the SMN gene is also associated with SMA. More patients with Werdnig Hoffman disease (SMA1) than other types of SMA have NAIP deletions. The relationship between specific mutations in the SMN gene and nearby genes and the severity of SMA is still being investigated so classification of SMA subdivisions is based on age of onset of symptoms as opposed to the genetic profile.

EVENFLOW

Well, seems like we are all playing the waiting game now… It is tiresome, very frustrating… but necessary and mandatory. DeeVa is as playful as always, never missing a chance to smile at Daddyslave, or to stare at Mommyslave endlessly asking for food… We brought the vanilla octopus to her room so she would have the familiar smell when she sleeps.

We are now sitting & waiting for the Cough Assist to arrive. The med card approved it but now they are looking for the cheapest seller. And we also have yet another holiday next Monday, so… it’s all about wait, wait, wait…

DeeVa is still intubated, her surgery closing us nicely. She has been very strong, her will never failing. The respiratory therapy (mainly saline through pipes) keep her drowning in her secretions, but since they are coming out and flowing her oxygenation is quite stable between 97-100%. They keep poking her to find out if any bacteria is growing, but no… everything seems to be fading away, leving just the spoils of war… ermm… more drool.

Seems her preferred side for resting and sleeping keeps on being her left side, she doesn’t complain as much when she is like that. We also noticed that while playing with the finger puppets, her attention always focus either on Uni or the Bear-ly Princess. They both display hues of lilac, so I’m thinking that is one of her favorite colors besides bright yellow (the main color of her most favorite toy, MrLion… who has been with her ever since she was born).

We’ve been taking some movies for her delight. We know her favorite pastime was watching Charmed, ER (somehow I think she’s not a big fan of this one right now… She must feel she was sucked into the TV…), the Tyra Banks show, and of course America’sNextTopModel… But we can’t really get the shows so Disney classics and then some will have to do. It was fun watching Pirates of the Caribbean 1, as we used the pirate finger puppets to act it all live, in front of her, just at her grasp!

While not at the hospital, Mommyslave & Daddyslave have been working at gathering the necessary paperwork to keep things rolling. We went to Mayaguez on Thursday night so we could get Deedee’s legal stuff, and so I could pass by my workplace on Friday morning. Plenty of good wishes and support from their side, they keep on surprising me. Friday was taxing and tiresome… Too many small stops, to then drive to San Juan again and stay with DeeVa until the pass hours are over is very demanding. The Mage is managing it gracefully, showing just signs of being sleepy. Me, well, being standing for long periods of time is not good for my legs because of my diabetes, so by Friday and Saturday have been using the chair with leg-lift at the hospital. I’m starting to really feel the strain of sleeping just a few hours, standing too much and not being able to keep within the right food schedule. The big problem is that if we don’t stay wary and move things, then who will? We can’t slow down, for Deedee’s sake. So far, God has been giving us strength and will. We keep on trusting Him.

Yesterday during the afternoon, and after finding out we needed another person so we could open the benefit account, we FINALLY were able to open one account for DeeVa’s cause. We did so at the Banco Popular de Puerto Rico, Catalina’s Mall branch, since it was the closest on the way to the hospital. LightShadow is making the flyer for the fundraising campaign… Well, actually she has been our spokesperson in the Western area, doing a lot with her computer and her public figure ways. We would have done very little without her help. Besides being a SuperGodmother she has also been a SuperFriend both with us and with Gruendel. We would be lost without you, LightShadow!!! I will post the flyer as soon as I get it.

So, the Fundraising bank account for Deirdre Medina is 041-473272 at BPPR. Feel free to make donations as you can, we will appreciate every cent. This account’s purpose is for transfer expenses to a hospital in the US (we think it will probably be in NJ as it is the closer choice). The medcard does not cover transfer or stay in any US hospital. So, any information on government programs or aid is very welcome. Some of the parents that has contacted us live in NY, so they should know the way around the main places we should contact. We need to know who to contact as soon as possible so we make arrangements in advance in matters of where to stay (RonaldMcDonalds house is a high prospect), Medicaid, and the like.

If you want to help run the fundraising, let me know. I know they will be doing things on Sabana Grande and Lajas, but I need people for Mayaguez, Hormigueros, CaboRojo, San German and if possible the area of Aguadilla-Moca-SanSebastian. Of course, anyone from elsewhere is welcome too.

So… to wrap things up… DeeVa is still at PICU, holding on… her g-tube/Nissan wrap surgery is healing up nicely, she’s been her happy self under the circumstances always asking for food and smiling at everyone that is not dressed in white… And we are working towards the goal of taking her to an SMA specialist in the States. God will keep on guiding us, and showing us the way.

We keep believing.

10-4

G-Tube & Nissan Wrap

Time constraints, so will keep this one short. But I will update with details when I can finally sit down to breathe a bit...

Today is baby's 5th month. HAPPY MONTH-AVERSSARY DEEDEE!!!

Yesterday they did the g-tube & nissan wrap surgery. Since baby had to be intubated twoi days ago, they wanted to take advantage of that. Two hours later, Deedee had opened her eyes and was quite interested in her puppet friends. We were quite upset about anesthesia, but that spell lifted as we saw her being her usual self. They put morphine, and off to la-la-land she went... for a while. She woke up an hour before visits were over, so we managed a session of singing and playing. :)

They are still waiting for the cough assist to arrive. Maybe by the weekend, if the next holiday that takes place on Monday does not interfere...

Plans are to take baby either to Utah where Dr Swoboda is, or to New Jersey, where Dr Bach is. So I hope we can set up things towards that goal. We are getting paperwork for asking some organizations for help. We will need plenty of help since costs for transferring to US mainland are very high... LightShadow and some friends at ARV (my workplace) are helping on this matter.

Gotta fly off to the hospital.

10-4

ONGOING HOPE

The days keep passing by, sometimes too slow and sometimes too fast. I can imagine what DeeVa could be thinking about it all... The sheer white lights that come and go, the strangers that get close to probe and test things on her, the mild comfort of MrLion who hangs by her side at all times, the constant gathering of all other small friends who at some given times during the day come to life to sing, dance and create a customized show just for her pleasure, and the popping in and out of her favorite slaves: Mommyslave & Daddyslave. By now, not only lullybies and sweet songs makes her sleepy, but also the constant sounds that make a technological chorus: the thumbings of the biPap, the beepings of the Oxymeter, the zumming of the vibrations machine... How everything changes in an instant! Almost a month ago, who would have thought that this chaos would come true? Almost a month ago, DeeVa breathed on her own, laughed spontaniously, and was happy with the simple warmth and joy that her favorite slaves gave her... It all seems a sick joke, a turn into the Twilight Zone which has no escape. The neverending quest for solutions that keep fueling hope is ongoing... There MUST be a way... There is ALWAYS a way.

WEDNESDAY 9th FIRST DAY AT SAN JUAN
In the glimpse of an eye we found ourselves teleported to the hospital at Rio Piedras. The Mage & I were a bit unsure if that had been a good decition based on what would become our job woes, travel woes, finance woes... plain woes... But it was obvious there was nothing more to do in Mayaguez that was not following the stablished procedure... something that was NOT what we wanted for Deedee.
During the day we got to meet the new staff, all with different specialties. The head doctor spoke with us, actually LISTENING to our concerns and dilemmas. The Mage and I established our point of view about the non-invasive approach followed at University Hospital, NJ and in Utah. He actually looked interested, a nice surprise. During the day the specialists poked and probed our DeeVa making certain that everything was as it should be... At night I sent out info to the head doctor.

THURSDAY 10th EXTUBATION, 1st TRY
The day was exciting from a fashion perspective. DeeVa was extubated, and a Cpap was placed in her nose. As we came back hours later, the machine was changed to a biPap. They are trying to see which machine is best for her. So far the biPap was working well, the only problem was the mask that had to be changed to see which size would be best for baby... and at all times was either too small or too big. Yup, accessories woes... One mask managed to stay put, and was tried for a long while. During the whole process, one of the staff ladies expressed interest in DrBach's approach and asked me to send her the info I had. So I complied at night. She replied she had used the CoughAssist once while working in private sector and sent me the MDA link that briefly shows its use.

During the day the head doctor had commented that he had not seen an In-Exsufflator and gave me the assignment of finding that out for him. Turns out is is the CoughAssist, so I sent him the info I had on that. By chance I also checked an old email and finally read a message from an SMA parent from Canada, Brad Fisher. I replied a simple hello to him, asking for info... I was in for a big surprise later one!

FRIDAY 11th TESTING the BiPAP
As we woke up to get ready for hospital, I checked my email and there were fou messages from Brad Fisher, all with plenty of info from his research to help his girl, Shira (SMA 1). We browsed some of it, and his site (winner of jewish journalism award)... Yes, information IS delicious! And so it is finding out parents that passed through this ordeal of confussion, uncertainties and woes... Parents that go on making their children's lives meaningful & happy. Things like this is just what we need, to get direction and to reassert our hopes.

We went to the hospital by midday. So far everything seemed stable within PICU. DeeVa had the biPap at 40% of oxygen and although the machine's mask was obviously too big for her (and is the smallest one) she wore it with resigned contempt. The head doctor passed by, commenting he was surprised that she was doing fine so far under the circunstances... The Mage and the Witch keep their watch over little DeeVa, making sure that she wakes up to a familiar face, songs and tales. So far, so good... DeeVa seems to be responding well to the non-invasive approach... now she just needs to show more tolerance to it. We strongly believe this will work sooner or later. It may all take longer because here it is trial and error, and that is understandable... I know in the end it is the best choice. So many parents and so many tests cannot be wrong. The SMA organization re-enforces this. And the parents of Shira, Taylor, and Emily... to mention some... We all believe.

As the last visiting hour was over, Mommyslave had the bright idea of going home to Hormigueros to get clothing and some other needful things... So it was just before midnight that the Mage and the Witch arrived to their house... Little did they knew that the house would be possessed by an angry spirit that mourned the lack of human breath by destroying the bathroom essentials... The foyer was flooded (as usual), the waterpipe on the living room wall seems on its way of exploding, and the downstairs bathroom gave huge monster wails as water pressure went on and off... The witching hour arrived, and feeling frustrated by the surroundings, both Mommy & Daddy went to sleep, hoping that the new day would bear better gifts...

SATURDAY 12th MEETING IVANCITO at AGUADA
Getting up early was a bit fruitless... There was no water in the house, so Mommy & Daddy got clothing for the week ahead and went to make sure Auntie and Groundel were doing well. Auntie was still sick but better, Groundel will get off the hospital on Monday. We got Mommy's prescriptions and went to Aguada to meet with Jessica & Ivancito (3.5yrs, SMA 1 boy). It was a short but very inspiring visit. Jess has a very cheery predisposition and an ongoing energy that is very, very contagious. She greeted us and instantly asked us to go inside her house to see Ivancito. The boy was peacefully sleeping in his room. She explained to us a summary of all she's done for him, her constant vigilance at PICU, how his heart stopped and the hospital staff thought him dead and her deep belief in him being alive made everyone move... making a miracle happen. She cares for the boy 24/7, her husband does so as well while not working. Since we had to go too fast for our taste we simply agreed to be back. Oh, so many things to talk about! She has many things to teach us, and to share with us. Hopefully we can meet again very soon...

Coriolis had been watching over our DeeVa during the established visiting hours. He reported no changes besides ain increase in oxygen percentage at his second visit, but everything else looking normal.

Our travel back to the hospital got delayed by traffic, but we managed to arrive two hours before our visiting deadline. DeeVa was asleep, but as she heard our voices she had to open her eyes to check if it was true, if we were really there. I felt relieved to finally see her and touch her, being away for the whole day made us quite anxious... The doctor told us that she had some bluish spots, so they had to put the oxygen a bit higuer again, 50%, so basically DeeVa keeps on in observation. I told her about Dr Swoboda's reply to me, that baby needs the CoughAssit therapy to prevent re-intubation. She will pass the info to the head doctor to see what they can do.

We went to Coriolis Inn after a beggar stalked us for money... There, a PC awaited to be connected and a room awaited organization. So, the Mage & I complied. The witching hour arrived, and we went to sleep... some... We are worried about the outcome with the non-invasive protocol. Main problem now is that they don't have a CoughAssist at the hospital, they will have to look for one and someone who knows how to use it (maybe the lady in the staff who has seen/used it). How long can DeeVa resist being only on biPap to allow time for that search? How much time will they allow before trying re-intubation? The option of tracheotomy is not for baby, not right now. She is too small, and I feel that she can do better without it. When she REALLY needs it, I will know... And only then I will give in to that idea. But even then, I will go first elsewhere to get an expert opinion on that matter. Both the Mage & I strongly believe that the non-invasive approach works. Too many witnesses prove that. It is uphill to make it at first, but we believe it is what is best for Deedee right now. She is a fighter, and she knows we are trying our best to simply bring her back home. We must keep making her feel our warmth, so her desire to be with us make her succeed.

SUNDAY 13th ONGOING HOPE
Getting ready to visit DeeVa. Hopefully things keep on being constant... So many things one wishes to do, and most end up in waiting and praying... Frustrating. Tiresome. But all in all, the constant presence at DeeVa's side must be certain for her sake. What is she to do being all alone in that cold, isolated place? Only her eyes can express anything she feels... And only we can tell exactly what it is that she needs... or demands. We know she will pull through... She has her father's strenght, and her mother's stubbornness. God granted us the miracle of healing her lungs, allowing her to stay with us... Granting her a chance to keep on bringing joy and purpose to our lives. We are grateful for that chance. Everything has a reason.

10-4

To San Juan and Beyond!

Last night Deedee was transferred to the Pediatric Hospital in San Juan. This is the best hospital in the island, so I hope the move has been for the better. We arrived just before midnight, settle the admission and waited until almost 3am to finally be able to see DeeVa and go rest at the local inn (Coriolis's cave).

Today, we went to the 1pm visit, talked to the doctors and at least they are willing to look at the information I've been trying to pull through... Perhaps now someone will listen? Well... We got a permit to be able to be with DeeVa almost the whole day, which is GRRRRRRRREAT!!! The mage will sty in daylight and so I'll try puling strings so I work in San Juan as needed... So after 5pm I'll be with DeeVa until 9pm. So far, so good.

They are to make a complete evaluation, hopefully they will read the links I sent them and hopefully they will try contacting DrBach and DrSwoboda. In an ideal worl I would have gone to the States as this all began, but right now I have to wait until things are settled a bit... I need funds to transfer DeeVa and to make sure that she gets what she needs when we get there... In the meanwhile we'll try to go with the flow, keeping her stable and trying to help her as much as we can... It would be perfect if this hospital would agree to follow the non-invasive protocol... We have already been warned that it is a bit uphill... Much uphill due to how things work here... But, we are determined to make this work. We will go to any ends for DeeVa.

She deserves a chance to live. We are the only ones who can fight the system to do so. God is at our side, and many people who happen to be working their magic... Prayers and actions are on the way. A long road lies ahead... So be it. We are not scared, we are not intimidated, and we won't accept no for answer. One way or another, we will prevail.

DeeVa seems happy with all this... She doesn't even know it yet, but soon she'll be sick of seeing us around her. Her craddle is full of plush dolls, and so imagination is always her reality... Her smile is ever present. And we will do anything to witness it, over and over and over... She looses herself in MrGallo and MrLion and Dolly... And now she has new friends... Uni, Wooflyn, Cowie, Piggy, and Drake. The puppet show... and her own show... goes on...

There is always hope. There is always a way.

10-4

Prelude to a Journey

Ups and downs… Too much information, lack of interest, comments taken the wrong way… Yup, the plate of the last couple of days… At least one thing is certain: We want to take DeeVa to NJ to make sure she is given the right treatment. We are rolling the dice, hoping to make it all possible.

YESTERDAY: Patience, patience
The morning visit went uneventful. At the afternoon visit we were told the staff supervisor wanted to meet with us (finally!). So, at the visit’s end, she appeared. The first half hour was pretty much debating over protocols in a very much defensive way… I was explained that protocols are not a rule that hospitals must follow, just guidelines and suggestions still on research… The Consensus points went down the drain following the criteria that they are not a rule… The internist made a point of DrBach being a Physician (gee, nevermind his expertise in SMA and his treating patients with SMA daily…) And from Dr Swoboda’s reply to me she just stated that cough assistance was not needed at this point, that baby used a type of bipap at a given moment, and that they have been following the right procedures based on baby’s needs for being alive.

I repeated that I was not doubting that they had saved Deedee’s life, and that they were doing their best based in their knowledge, that I just wanted them to consult with an expert in SMA… Seems that is the most offensive thing you can say to a doctor in this island… The whole condition was explained to me, the respiratory system, the issues of quality of life, the issues on nutrition, the doctors that have checked Deedee’s tests finding nothing wrong with her heart, kidneys,etc… And I repeated I did not doubt their ability but still seems I was doubted… I mentioned I trusted they were the best because of two doctor referrals and an inquisitive “Yes, who?”followed… Maybe they thought I was just saying that… When I mentioned my two friends, Ananska and Neixa, THEN the whole ambience changed.

Gee… Naming two names gave them the trust in what I was saying was not attacking them… Why that is not so reassuring for ME? (sight) They talked about transfer, and I asked if it was something needed due to lack of any resource. The answer was no. If that is so, then there is no need to transfer Deedee, within the island. It is well known that this is the best or second best pediatric hospital in the island (and that is good). The problem is the matter of expertise in the area… (Stubbornness, professional pride… Egocentrism… You name it…)

So… the outcome of the reunion? Hmmm… Baby was at 30% oxygen yesterday… She is stable. She will now face the physician and the physical therapist. And they granted the calling of the geneticist. The Mage and I decided she will stay for now where she is. If we were to transfer her to San Juan that would mean stress in many ways, plus seeing her only an hour two times a day. If she is in no need for transfer because she has everything available within the island in here, then why submit ourselves and baby to that stress? If something changes to the bad side, then it would make us go to the Metro area, but if we can stray from that, the better. At night, DeeVa was happy, playing with MrLion and mommy and daddy.

TODAY: Prelude to a Long Journey
It is the day when children go get some fresh grass to leave under the Xmas tree, for tomorrow is 3Kings Day. In the morning, DeeVa was sleeping a little, then awakened to find daddy’s gaze and smile playfully. Oxugen was at 21% (YAY!!!) Granny Millie was also around, and as the Mage was making a recount of a movie while I was singing to baby, baby decided that the show was too much and went to sleep. During the afternoon, we arrived to find MrCornellius (Yup, Kellog’s Corn Flakes character) at her feet. There had been a “parranda” and they left that as a 3King’s Day gift for baby. So we started playing around with MrCornellius, and Deedee loved it. She was not scared of him, actually following with her gaze everywhere he turned and ran and danced… Music, songs, MrLion and MrCornellius left Deedee beat. She fall sound asleep just in time as the visit hour ended…

At nighttime, the geneticist went in, saw Deedee and then spoke to us. He mentioned Utah, mentioned the basics of what we are to face, the human side to it, the not so polite things ahead... Many things reassured what we already know in our minds and in our heart. I hope he can contact DrBach and that Deedee can make it out the ICU as fast as possible so the journey ahead can begin soon. Deedee will have an added energy boost in her daily routine, which will hopefully strengthen her even more. The Mage and I had been talking much about making arrangements for a possible voyage to NJ… So based on what we heard this time, it is actually a good idea. Utah is also an option, but we have family in NJ and NY, which tips the balance that way. We just need one thing to make that possible as fast as it can be: Deedee recovering, getting out of the hospital so we can actually arrange to go.

So far, she has been strong, her will for staying has been evident, and if she chose so… who are we to deny her what she already decided? We don’t have a way to finance anything… So that will be the other challenge to actually get her the help that we think she needs. The Texas crew is finding options for traveling, organizations that may help somehow… in case her voyage needs a transfer with specialized equipment. The NY Crew will get us info on SS, Medicaid and local NJ/NY laws, aids, etc… I will sell the Hormigueros house, moving back to auntie’s place, leaving everything prepared for the imminent adventure that has been thrown at us… It is all a chess game in matters of coordinating things so we can do what is best for DeeVa. Hopefully we will get the help we need, and Fate will smile at us… rewarding our efforts with many winters of life for DeeVa… Her eyes and her smile create the light that guides us through this storm. Together, we will climb this mountain, conquering it.

10-4

Doctors, Tests, and New Year's Haze

This week has gone in a flash. I was unable to seat down and write events… It all has been a mix of joy, fear, success, frustration and courage. Today DeeVa got the DNA results. As I expected, for it was obvious, she’s got SMA Type 1. Now that she’s been legally branded, I hope things begin to move fast.

The news so far…

MONDAY 31st: Year's End
Very low traffic, that was the best of it. At the hospital, lack of staff... A light atmosphere as a consequence of no bosses around... Morning visit, afternoon visit and night visit went flying. We sang, we played with Dolly and Hippo... And baby looks alert, happy and as lovely as ever. Oxygen is at 50%.

The night was unnerving. Too many people throwing fireworks and the like... I dislike it because of the people playing with guns and "killing" the year... As soon as we went home I took a bath and went under the pillows in the bed. Between the sounds and the fact that the craddle was empty it was a long, sad, frustrating night. I was restless... And I know the Mage felt the same way. A never-ending "Why?" that doesn't really matter but that hits you hard over and over and over... DeeVa must have been scared at the hospital, listening to all those high-pitched sounds... I prayed she would not feel lonely... I prayed she wouldn't cry.

TUESDAY 1st: A New Year
In the morning, everything was normal, stable… Baby was happily following MrLion as the songs from the CD were also singed by mommy and daddy… Oxygen was at 40%, DeeVa was feeling pampered and we got a reward of many smiles.

As we got to PICU in the afternoon, they had changed the oxygen machine to a simpler one… And DeeVa looked beat. The Mage talked to her and kinda mentioned that she looked strange, maybe a bit bluish. I dismissed that as a reflection from the blue tubes… As I went to grab her hands as I always do, I realized both hands were blue. So we called the nurses… The doctor mentions “I told you that wouldn’t work” and we were asked to wait outside while they tubed baby back. After a while, we went in… Baby had recovered some color in her face, the old oxygen machine was back, this time pumping oxygen at 96%. The doctor told us that Deedee had accidentally pulled out the tube so they left her without it to see if she could breathe on her own. Obviously it didn’t work… Okayyyy… You do THAT and you leave the baby unsupervised? If I had some faith in the hospital, it went down the drain thanks to this. What if we had not gone to see baby in the afternoon? They were busy with a new baby at PICU… I just can’t believe some things. That completely reassured the fact that they don’t know what they are doing with her. This is the second attempt at extubation, both done the WRONG way based on all we have read. If this keeps on, they could even cause some brain damage… they should realize that! Oh, I didn’t want to leave… For the last fifteen minutes baby was happily following MrLion again… She seemed fine and content…

At night, only the nurses were in that floor. Of course, Hapy New Year, or something… It really bothered me, because an emergency takes only seconds to happen. Nd this is intensive care? But what can I expect… At the other hospital Groundel didn’t have someone to change his bandage for almost a whole day… The joys of Xmas!

The Mage and I arrived home. I had not realized that some people had left messages with support and much needed info. So, we stayed until very late… or early? In the morning, reading and sending out some mail… Someone MUST have an answer out there… Things cannot be so hopeless…

WEDNESDAY 2nd A Doctor's Call
The morning went without much intervention… DeeVa slept a little, then gave many smiles to daddy. Oxygen at 60%. The Mage left a paper to be filled out stating his family leave absence for all these days because of the hospital ordeal… He left that paper 2 weeks ago, and they had not filled it yet. So, they told me to get it in the afternoon…

I went to have lunch at auntie’s, and just as I was about to reach the hospital for the second visit, I got a call from DrBach. He told me they were not following the right procedures, and that I should try either getting the staff into following the protocol or getting help in that matter, or transferring baby either to UH, NJ or to the hospital in WN. I was really excited to get something, as all these days I’ve been sending out messages trying to figure out what to do, which is the best choice… As I KNOW that what is going on in the hospital may keep baby stable, but may affect in a bad way her condition…

So I got the info, his number, and went to get info on my insurance’s coverage in the US… I had to wait for 3 and a half hours to get a brochure and so they would ask me to bring the patient record… Yup, information procedure they could have told me when I arrived, was asked what I wanted and they gave me a number… Breathe in, breathe out. I arrived at 4pm to the hospital, visiting hour had ended… I wanted to tell the doctor about DrBach as reference for the protocol, but they just told me to come back on the next visiting hour. I was upset because I didn’t get to see Deedee in the afternoon thanks to the medical card stupid staff… and this answer didn’t help the case, either.

Deep breath… I went to get the Mage’s paperwork and they had not filled it in the hospital because, and I quote, “The father had not been taking care of the patient, the patient is in intensive care so there is no reason to fill in and sign a family leave. The patient was taken care of 24 hours. The father had only been visiting”. WTF? It’s like… Exactly… Visiting a baby that can die any minute, being there because an important choice may appear any minute… This is no flu, no chicken pox… I managed to get a certification specifying that Deedee was in PICU and that parents had to attend visiting hours to get the doctor’s veredict… From there I went to Medical records to get a copy of Deedee’s case for the medical card… and since baby is still in PICU they cannot give me a copy of the complete record. Ugh! Lovely!

Frustrated and angry, I went to my car to take a long drive… I guess that it was about time to simply just cry it all off. The uselessness of everything! Tied up by stupid rules… The wall of “No” kept on rising and getting thicker… I drove until I reached another town, ending up at El Calvo’s house. I kinda vent it all off, and met the Mage to give him the so-called certification. Then I drove back to ground zero, taking a deep breath and trying the mantra “Be nice, speak up, they will listen”.

So, at night Deedee looked different from all the other days. This time her eyes were not completely opened and she was staring mainly into the sheets. As I approached, she looked up at me with the saddest eyes… I have never seen so much sadness in her. It literally broke my heart. I tried cheering her up, singing a bit… She managed a smile before I left, but she was sad. I can’t believe that not seeing us in the afternoon made her feel so. And it was evident she missed daddy, as she seemed to look for him to no avail. I talked to the doctor in charge, she had not known about the oxygen event the day before so I refreshed that for her so she would understand why I was so obsessed with the SMA intensive care protocol… I gave her the Consensus that establishes everything. She said she would forward it and that next day I should look for the social worker and the pediatric supervisor to tell her all about my concerns. I was satisfied with her response as she showed at least enough interest in what I was saying.

After I left I was heading home, but I made a turn out of instinct. Or perhaps I just didn’t want to get home at all, as it would be an empty place… So I visited an old friend. Since she’s a doctor she gave me some insight on options and called up her brother who is a geneticist. She mentioned the pediatric hospital in San Juan, and I explained to her the importance of the UH in NJ and the one in Utah. We talked a lot… Until I heard my cel singing and I realized it was close to midnight. She gave me a small token for Deedee, a small silvery image of Virgin Mary. And I finally got home, into the Mage’s arms. I told him about the plan to ask the hospital to bring in the geneticist, and to give the staff all the printouts of the protocols and info… We stayed until 3am doing all this… Anyway, lately we just can’t sleep. We keep looking for answers and choices… There must be a way…

THURSDAY 3rd The Final Veredict
Morning visit… I went to PICU with the idea of speaking with the supervisor giving her the right info to make things move… When I got there, the supervisor was not even in the hospital, the social worker is on vacation and the doctor in charge would not talk to me until the second visit. I was really pissed off… I don’t understand this bourocracy that doesn’t want to listen when you have something important to say. We went to where the doctor was, managed to get a hold on her, explained our concerns… especially that we had spoken to a geneticist and that they needed to call him. The constant we cant do anything, procedures, yadda yadda is beyond bothering… I understand that rules are to be obeyed, but if this is an out of the ordinary case as it is not something of their expertise… Why so much unwillingness to get the information or the right channels? Excuse me for being mad about it. Having the answers right in front of you and not being able to do anything to reach them because people tie you up is the worst feeling in the world. Knowing every second count makes it even worst… Back to PICU, quite bothered, quite angry… At least watching DeeVa and singing to her soothed it all a bit. The hour went too fast… Virgin Mary was pinned into Dolly’s chest, so both can guard Deedee’s dreams… Oxygen is at 50%. The Mage went to work, and I went to auntie’s to eat something… And to try putting myself together in mind and spirit…

Afternoon visit… I wanted to see the supervisor to give her the printout of the protocol for people with SMA, but was told to wait through the visiting hours. When time was out, I was told to wait outside PICU for her… Minutes later the doctor in charge passes by telling me that her supervisor had to go take care of an emergency in another town… Oh, that made my day. She added that the lady had taken the SMA Consensus that I gave them yesterday for she really wanted to read it, and added that at least there were some news: The DNA results finally arrived. And they were positive, SMA Type 1 because of age range, but Type 2 following two positive genes that apply on that array… Like I didn’t knew… We all knew it would be positive. It was obvious. The good news, not having to go through the trauma of delaying the inevitable through extremely painful ways… The bad news, the condition is not piece of cake… it can be fatal, yes… But, we keep the belief we can beat the odds. So far DeeVa has shown her inner strength, her desire to be with us… And we will return that favor. The biggest miracle has been her being alive until now. The rest is up to us… Courage, wisdom, will, love… Together we will conquer this mountain.

Night visit… DeeVa was placed sideways, so she could finally rest her back. But it seems that the stitches bothered her, as she kept crying. The doctor in charge approached us telling us that the supervisor had talked with administration and they agreed to call the geneticist. He will pass by on Saturday to see DeeVa and give his report/assessment about her. The doctor also called the Pediatric Hospital at Rio Piedras, exposing the case so they make a bed for baby. There she should be able to get help in all the areas she needs to be assessed… Since the doctors working there are proffesors too tey can contact doctors in the States and try out protocols… So this may be where they finally begin to apply the non-invasive protocol for intensive care patients of SMA Type 1. We will see… So far, I’ve been told this is the best pediatric hospital in the island as they try anything to save the baby. I hope this is so. What I want is to take baby to University Hospital in NJ where everything is already established and there will be no trial and error… I don’t want DeeVa to become a guinea pig in this island… But reality about finances bind me to the established system for now. If this works and DeeVa pulls through, then the plan to move to the States could be assessed with more care so it is successful ( Both the Mage and I think it is the best for us all anyway… DeeVa will need the special care in detail that this island doesn’t provide for disabilities, and I will get better diabetes care). But by now we are ready for anything.

The Mage and I have just landed in Holland., but some people have already gave us some highlights of the place. Thanks to them we are not broken by the facts. It hurts, life is about being hurt… And about healing, beating the odds, and fighting for our dreams. I knew our baby changed us forever, from the start, when she opened her eyes and showed us those big deep blue eyes… “Oh, you’ll give us trouble”, that was my first thought. So much beauty, so much feeling that nails you each time she stares at you… She understands everything even if she knows nothing. And in her we see that small miracles happen everyday, many take them for granted but not us… She brings delight and passion to life, each time she smiles, each time she holds our fingers with her tight grasp… And we wouldn’t have it any other way.

We love you, Deedee… Our DeeVa. We miss you so much… We want you home. Be strong… Feel our love. We believe in you. Keep making us smile. Keep making us dream.

10-4