Sunday, April 27, 2008


Wow! Another week has passed! Days are flying away, too fast for comfort...

Early Intervention visited us, and after playing with DeeVa and addressing concerns and wherabouts, DeeVa got accepted in the program. They scheduled a meeting for next week on Wednesday, so the case manager will meet with us and lay out a plan for our DeeVa.

Date at the hospital, with DrBach. It was a very crazy day… We had to take a taxi to go to the doctor’s office. There, as we waited, an RT updated us about the recession and lack of jobs in Newark (lovely). By midday DrBach and Lou saw Deeedee, we left Deedee without a mask to see how much she tolerated (45 minutes) and then went to get an ECG (just 5 minutes). We showed Lou our DeeVa’s site, the links to the other SMA families and mentioned MJ’s tract… Oh Dear! Lou went insane! He tried reaching MJ for more than half an hour to no luck, especially after seeing the pic on her site with a tract.

Lou mentioned Ethan was upstairs, so we went on to visit him and his parents at PICU. We were really glad that plans for extubation were unfolding… by now that word gives me goosebumps! Ethan’s parents are very nice and sweet, and very hands on! They know exactly what Ethan wants, how he feels, what bothers him… Since Deedee has been away from home for so long we kinda lost track of the details, but we are catching up. At least now she makes a sound whenever she wants attention, which is good. Her silent cries for almost 4 months were awful…

So, the doctor said he'll see us in 6 months from now if nothing bad happenned. We went back home in taxi of course… And in the way the LTV began beeping low battery. That was very unnerving! The trip took forever. As Mark opened the apartment’s door the LTV shutdown. Talk about timing! Yup, that was the adventure/action moment of the day… Not funny.

DeeVa was exhausted after the whole drama, so she surrender herself to the Sandman’s dust. At night she woke up to catch Nemo, then to sleep again.

It was a bad day. The morning went smooth, but by midday DeeVa had hit 92 and wouldn’t go up. As I handled her with suction/coughing, the numbers went down to the 70’s. Ambu action made them raise to 90-92 but they just wouldn’t go up. That trend stayed for at least 3 hours… Mark arrived by 5 something and took over my watch. By sleep time her numbers got to 96, and we let her be for a while. By midnight she was 99-100... So we finally went to bed, exhausted. I still don’t get it… Why she went down? I think it must have been a bad plug. My main problem is I can’t bend and carry Deedee because I lack the arm strenght, I can only carry her if she’s placed in my arms. And for CT I can’t do so for long periods because my arms become intolerably in pain ( my trapeze was damaged at work thanks to lifting computers and I have symptoms of carpal-tunnel). So without proper CT in the right places the plugs wont come out… Coughing her too much makes the blood rate go beyond 210, so it must be stopped at a point (she REALLY hates being coughed). At least Mark can handle CT’s and lifting baby. When he is not around everything gets more difficult.

Daddy went today for the Wellfare/Medicaid date. He now needs to get them an affidavit and a letter about the rent pay. Details, details… And I must go fill/sign some papers. So that should be Monday’s adventure…

Our DeeVa was quite awake in the morning, so by midday we took her out of the crib and into the living room’s bouncer for a tripple session of Disney movies. The surprise of the day? She stayed without the mask from 11am to 4:30pm. Yup, she breathe on her own for 5 hours straight. The day before she was so bad… I just couldn’t believe it. We are so happy about this! During that time she didn’t look distressed or struggling to breathe, her oxygenation kept between 98-100. Her heart rate was a bit high (140-160) but she seemed mellow, smiling a lot. After that long lung workout, we placed the mask as she was turning a bit red in the face, and so she went to have a long nap. When she woke up, she watched Enchanted, and after her daily therapy she went back to sleep.

DeeVa stayed without a mask for 3 hours in a row, before starting to fuss. She was definitively in “ obey me and just me” mode. I exercised her, placed the splinters, played with her with the farm animals (her favorite tune is when she pushes the froggy and hears the banjo), and read her the Little Mermaid booklet. She finally dozed off watching the pinwheel and listening to Pocahontas… During the night the oxygenation was going down to 92 then back to 97. No plugs, nothing strange…. So we changed her position three times. She finally stayed at a steady 98.

Mommy had a meeting for a business opportunity, so Daddy stayed with baby until the afternoon. As I arrived, baby was without the mask and had been so ever since midday. We put Fantasia on, and after the movie ended DeeDee complained so we placed the mask on her nose (after 5 hours without it) and put her back in the crib. She was in “leave me alone but don’t leave me” mode… Some songs later, I left her holding the bear-that=changes-colors, and with the pinwheel running as the LTV blows… She was very calm at night, sleeping tight without any problems or delays.

Baby had her breakfast at mid-morning. She’s still napping but shall soon get her morning treatment, so she can have her Disney session later on…

So, another week passed. It’s been two weeks since our DeeVa came home. She is doing well, scaring us some days so we keep on the right track at all times (I guess). She seems happy, and seems very stress-free. Yup, no more poking and probing! We hope that this trend keeps on, so she doesn’t get sick. By now we are completely tired of hospitals…
Next steps ahead? We have some things in sight: A right stroller for Deedee, transportation with a lift, a positions bed. Daddy got her a memory foam pillow for her head and fo her legs. He also got a percussion massager that we will try today. Hopefully Early Intervention will bring on therapists soon. We also need a caregiver that could comply to care for Deedee at least once a week (what we can pay right now) so we can go to the next job fair and so we can visit government offices together. The job-hunt goes on, as well as Mommy & Daddy will be exploring a job opportunity to see if it works.

Things keep moving ahead, positively. With God guiding our steps, everything that is good for all of us will come our way. In this truth we believe.


1 comment:

Tina said...

I really enjoy reading about your family and how things are falling into place. It is so wonderful to see pictures of everyone too.

Keep up the AMAZING work!!!!!
I hope to get a package out to you soon.

Hugs from Chicago,
Tina and Ally

PS - Feel free to add Ally's webpage to your site...