Wednesday, May 7, 2008


Another week. Deedee has been doing well, being without the nasal mask during the afternoons for 4-5 hours in the perfect days and 3-4 in her “fussy“ days. She sleeps through the night without any problem, the sound of the pinwheel making her soothe to sleep each time the mask blows air.

Last week Early Intervantion passed by and their evaluation was positive. Today an RT passed by to evaluate her physical needs, made some recommendations (most we already do: the exercises, trying to make her seat for short priods of time, keep her using the splints… improvise some new ones since they are getting smaller), and on Thursday EI must show up with the final action plan.

Also, last week Daddy went to the Medicaid/food stamps place with the letter that they asked from me. This second visit made more sense, as with everything explained in detail they made things move fast for us. We received the Medicaid card yesterday, so Mommy could get her medicines today… We must call the hospital tomorrow so payments get processed (it’s a $10,000 bill, so we hope everything works smoothly).

So at least the basics are covered. SSI must be around the corner, within the next two weeks. She’s been diggin the powered Similac without problems. We still have to get her juice so she has some variety, Daddy forgot to get that when he changed the WIC check for the powder fake milk. Deedee takes 1 cup of fake milk every 3 hours until bedtime. So far she doesn’t take food while sleeping from 11pm to 7am, the same routine she kept at home before the long hospital stay...

Deedee gets feed at 7:30am, along with her daily dose of vitamins and iron (that‘s all the “medicine“ she takes for now). By 10am she takes her 1st treatment: percussion with an electric massager, nasal/mouth suction, cough assist as needed (sometimes 2 sessions of 3, sometimes 2 sessions of 5, sometimes 3 sessions of 5). We keep the nasal mask off until she needs it later in the afternoon (if she is not desatting). Afterwards she takes her daily bath.

If it’s warmer we bath her in her “bathtube”. If it’s really cold we just use a wash-wipe. If she’s fussy we bath her in bed, placing the mat underneath her and using water in a bowl and soap in a cloth (as they used to do in the hospital). She gets her spa beauty treatment (shea butter lotion all over her body), nails clipped if needed, and clothed in the latest cute fashion. Then she gets her food in a continual basis for the rest of the day, each 3 hours.

When the beauty/clothing phase is finished, exercise time begins. We work her arms and legs, so she can try and keep part of the movement she has. When exercises are over, then she uses pixie dust to fly from the crib to the living room, where her bouncer awaits. We like to do so in the afternoon, around 2pm. We put some Disney videos to keep her entertained. She likes being there as in that way she can keep an eye on Mommy and Daddy, being next to us if we use the computer or if we are prepping food in the kitchen or if we are reading/writing/painting. She LOVES being there at our side, smiling with a wide grin whenever we make eye contact with her. It is funny that no matter how entertained she is, if we look at her she notices and glances back. That sixth sense… While she is in the bouncer, we place the hand/feet splints on.

By around 4-5pm she has her nasal mask on. She naps a bit, getting up in time to watch Daddy play in the PS2( she is already addicted to Kingdom Hearts, and complains each time Daddy pauses it to get something to eat). By 10pm she starts getting ready for bed, takes a small trip back to her craddle where Daddy gives her the 2nd treatment: percussion (both using the massager and hands on CT), suction, cough assist and suction. She is placed either on her right or left side, with her pinwheel attached to her head gear so the sound makes her sleepy. We also keep classical music in the background (we found an amazing radio station with violin/celo classical music at nights! Yes, the Baby Einstein and the Baby Lullabies still come in the picture some nights, but the radio station grants some variety, and she likes it).

Mostly she seems a bit scared of the dark, so we keep a LittleMermaid nightlight always on at her side, and we try to let her face the OceanWonders Aquarium in the craddle, she loves the fishy and moving bubbles. Plus that has a blue light. We also place the color-changing bear in the other side, so the lights make her feel safe and she sleeps very content ( always holding MrLyon in one hand, of course).

Seems that desat scares are normal, as pluggins occur spontaneously… Keeping an eye on her at all times is a most. We keep alarms for desat at 94, but whenever she gets to 95-96 it means she is tired of breathing on her own or she is plugged… Her nomal saturation is 98-100 always.

And so this is Deedee’s daily routine. So far she’s had no problems with it. She’s happy, alert, always absorving what is going on around her. Oh, she gets bored easily… I need to make a sling thing so she hangs her arms and plays more on her own, that;s the next “project”. And getting strips of Velcro to attach toys for her to reach. I don’t know how can playing with bow strips can be fun, but I’ve been told to get some so she practices her grip. I’ll see which other weightless things I can get and shape in interesting patterns so she actually reaches for them (so far she only and exclusively reaches for BarelyPrincess and MtLyon, nothing else).

We are trying to close the bank account at PR, since it is giving us so many problems for getting the money from it. The branch over here has the same pain the woohoo attitude, they require 2+ signatures for everything, and right now that is a headache since both Mommy & Daddy cannot go together to the bank (someone has to take care of Deedee, she would tag along if we had transportation… but that is another WIP story). And reaching Coriolis, the third co-signer of the ProFondos “corporation”, has proven a fruitless effort… We don’t know why he just wont return calls. So we are on our own to solve what seems unsolvable… So if anyone wants to make a donation, email us for the mailing adress in Newark or send it via PAYPAL… but don’t use the bank account.

Daddy is job hunting, today he went to a job fair and tomorrow he’ll go to another job thingies. Mommy keeps looking/submitting resumes without getting any feedback… not too reassuring. If anyone knows a real work at home option, please contact Mommy ASAP! At least the backup of governmental help is on the way… But we know that will not be enough to live. So, the job quest goes on…

Yesterday Marilu, Vanessa, Natalia and Juan passed by to take Daddy to Trenton, checking up a minivan that may be perfect for us. The owner seems willing to work things out and will wait until tomorrow for the payment… We HOPE we can work things out to get the cash for the minivan from the friggin bank… We don’t get why if it is a branch of our main bank in PR there is so much trouble… So much for cutting edge information systems! If the bank keeps up being difficult we will loose an opportunity to get a nice vehicle at a very reasonable price based on our situation.

Today, Candi’s brother and his family passed by to visit us. Finally I’m actually seeing/talking to people! Yup, Mommy is going insane being lonely with no one to talk to… It’s been two weeks of being confined in the apartment… I hope that getting the mini van will allow us all to at least go once a week to a mall. We need to go out as a family, DeeVa needs to actually be part of the world and we need to keep our sanity.

Last week someone gave me an unexpected Mother's Day gift... I never thought that a month later after being in Newark I would make a headline, even less that it would be for Mother's Day. Maria wrote an article about Deedee's ordeal, and how Mommy coped with it. I cannot put a link to that article in Vision as they dont seem to have a "back-issue" database, but since I couldn't post anything last week, wanted to at least mention it here. Thank you so much for everything you have done for all of us. Deedee has a guardian angel in flesh and blood. It is nice to know that in a way we were not forgotten... Perhaps somehow we will reach some families with similar situation and help them with our experience... showing them things can be done. We were surprised, shocked, and very much pleased. Thank you so much, Maria! It's things like that which inspire one to go on in the big fight. People like you, a very special few, are the ones who truly make a difference.

On less positive news, Steve is back in the hospital again… He was hospitalized on Saturday and seems will be there for a whole month. He’s at Perea, room 308. Please pray for him, so he heals… His leg is in bad shape.

And so far, this is all that has been going on these past days, and now.

GOD: Thank you for making things run smoothly, for showing us that we are not alone, for helping our DeeVa in everything that she needs, for shedding Your light over us at all times... Amen


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