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!)?