Monday, September 22, 2008

Struggling... But Hanging On!

These days have been filled with so much drama and adventure! I tell you, it’s not easy being me!

On the last Friday of August I finally got my foot splints. They are awesome! The Splint Guy really outdone himself. The violet Velcro was a really nice touch (I love violet, as much as Mommy does!). And finally my feet are aligned and not dropping (which is not comfortable at all). Yup, I am really happy with my new splints. They are so comfy!

Last week began with a rough weekend… My heart was going bananas, going too high. Mommy and Daddy were really upset, trying to find the reason for that… Well, they put me in a regimen of prune juice and at least the high heart rate has been under control for now…

On Monday was the last day of my first shift NurseKim as she is allergic to so many things, and had to leave us thanks to that. From the next day, NurseGlenna began a 9 to 5 shift that has been a hit with Mommy and Daddy. Stress levels going down, and more family time makes everyone smile more.

The main problem these days is my “alien syndrome” (remember Sigourney Weaver’s creatures? Well, THOSE aliens…). Yup, my drooling is increasing and seems non-stop. The reason? Teething. Yup, my teeth are coming soon… So the people from the SMA forum warned Mommy that my heart rate will go bananas because of teething pain, and we are ready… Sort of… Why I need teeth anyway? Geesh… As if things were not uncomfortable enough! Oh, well…

I have been a bit choosy with my naps lately. Not my fault. Actually usually the therapists come before midday. Last week they were showing up in these weird hours that just drive me insane! I need my beauty sleep! What, you think I am this cute just because? No! It is hard work! I must have my beauty sleep!

Anyway… TherapistPat passed by on Tuesday and I was “out”, so she left me something to remind me of her: a Sesame Beginnings Bubbles book, and pom-poms. I absolutely LOVE the pom-poms. They match my cheerleader t-shirt! And the bubble book has pretty pictures. I liked the rubber ducky, and Mommy brought one real rubber ducky to my crib. Yup, my entourage keeps growing. I also got my FIRST HAIRCUT on Tuesday... Mommy is a danger with those scissors!

TherapistEllen arrived in Wednesday’s afternoon. She went with Mommy through the basics that are “in process”: Getting me a bathing seat, getting me a switch and some adapted toys so I can make even more decisions. They went online to look for information on the Cerebral Parsley site, as they have a nice library that lends these technological tools. She also checked the splints that SplintGuy gave me. And she was very pleased!

I had an appointment with the GI (Gastroenterologist) on Thursday. For a moment we all feared that the medical transportation would fail us (again) but, alas! They arrived just in time, and so I went to the doctor’s office. Everything is all right and I got a prescription for a mickey button. The GI pointed out that if we get the mickey by the same date of my appointment with Dr.Bach she could do it that day so I don’t have to be in and out again. We will see how that turns out in October…

We had a scare at night. Daddy was mugged. He had gone out to get me some things and a guy menaced him with a gun. He took away Daddy’s cellular and ran away. Luckily, that was all he took! And Daddy is ok. Daddy was mad because he lost all the contacts he gathered within the last 2 months… mostly contacts of people that are trying to help us… But that can be recovered. If he had been shot, … I shiver just imagining that! What would be of us without Daddy?! No, no, no… I’m glad Daddy is safe. Mommy is glad, too.

PsychologystSusan came on Friday during the day. She watched my sleep and talked with Mommy. Daddy could not be around as his CNA courses now also takes Fridays… During the night some government people visited us and so we hope some solutions come our way. I hope so… I pray so… Mommy and Daddy have much over their shoulders, and only count with God’s guidance and help. The good things about it, where a door closes a window opens. God always watches out for all of us.

Mommy was busy sending messages through the Internet to many people… Some acquaintances, government agencies… I was hoping to get to Florida soon, but Mommy found out from the real government sources that going there would mean I would loose all the services I have now. Imagine that! They have nothing for SMA kids… offered little hope of having something in the near future… This is so bad! We all have some family and friends in Florida… But, needless to say our plans took a deep U turn. We got to NJ to save my life, and we need to stay and keep it up. So… Mommy and Daddy are trying to figure out issues to keep it all together. They need help… Having o work has many consequences, and I can’t end up in the streets! Where would I hook-up my ventilator! And what about food!

This weekend went too fast. Mommy had web design course assignments for both days, and should hand in the final project tomorrow… Talk about being busy. That, and keeping me happy and fabulous. I’m getting many desats because of the increase of my mouth secretions and that is quite frustrating… My lungs are clear and I am not sick… Yup, I’ve got the teething blues.

Today TherapistEvelyn passed by. Everything was fine at first, but I had an episode of too much secretions stuck in my throat. Mommy and NurseGlenna took care of it… and while finishing my OT session I fall asleep. Mommy has been on the run answering phone calls and opening the door and running to me to “un-choke me” the whole day. Yup, I keep her on her toes! At least the day is finally fading away, and I am watching my favorite: Little Mermaid3: Ariel’s Beginning. I got a nice bath, nice music, and love all around me. What else could I ask for (besides more food, of course!)?

Wednesday, September 10, 2008

A video about SMA: Invisible Heroes

The Fight Against Spinal Muscular Atrophy is an ongoing day by day, minute by minute task. This video explains what is SMA and the ongoing fight to find a cure. I'm posting it here so you all get to know the inmediate facts about this fatal illness.

Invisible Heroes: The Fight Against Spinal Muscular Atrophy

The cure is nearby. How can you help?

1) Take 2 minutes to go to to sign the petition to pass legislation approving government funded SMA research as recommended by the National Institute of Health (NIH).

2) Send an email or letter to your representative to support the SMA Treatment Acceleration Act.

3) Make a donation online at - even $1 helps!

Monday, September 8, 2008

Heart Rate Problems since Last Wednesday

Baby is resting, so Mommy takes over on this week review. September had a rough start. Last week was quite insane to say the least. Normal daily routines where altered as baby decided she needed even more attention so her heart rate was going up and down from 170 to 215… a not so fun rollercoaster.

Wednesday night was crazy and scary. The heart jumps were big, and although they did not maintain they were too high. We called her pediatrician and she advised to wait half an hour then if there was no changes to take her to ER. Upon reaching 1:45 in the morning baby kept herself around the 170’s, but as she fall asleep she only dropped to her 150’s which is not normal. At 7am she was still asleep, but her heart rate was hovering in the same 150’s. We decided to take her to ER for a checkup in case one of these was happening: cold/flu that may turn into pneumonia, heart problems, any other source of pain. We also thought about teething and constipation, but decided to check anyway… we are not doctors.

Thursday at ER... At least the experience was not as bad as the g-tube night event…They did an x-ray, an ECG and blood tests. We stayed there 8 hours. Nothing. Deedee’s heart rate danced over 150 but they said she was normal and that we should just monitor her… And with that we were sent home. Thursday night went smoothly (under the circumstances, heart rate going up but keeping under 180).

Friday night was not so nice, as ups and downs in different intervals kept us up all night. Saturday night was the same, until 5am. After a bowel movement she calmed down a bit, and we had to watch her the whole Sunday. At least Sunday night she fall asleep after midnight and the beeps of the Oximeter were because of the oxygen going to 94 on her deep sleep, which is normal. We finally had some sleep (6 hours, amen!), and today baby is still resting without any further event (fingers crossed).

So by now we believe it is all a constipation problem. Still, we need to keep on being wary… as the season changes that are beginning may make her sick. Teething is around the corner, and from other parents we have the warning that the high heart rates will also happen because of that. The fun is just beginning…

The splints guy is supposed to finally bring the splints today. Tomorrow there will be a reunion to gather the questions/concerns for Dr.Bach’s appointment in October. Later on will be the communications recap. She has a GI appointment on next Wednesday. I hope things get better by then.

So... Please pray for Deedee. Until we are certain of what is causing the ups and downs, it is all we can do.