Sunday, January 22, 2012
This year began with me at the four star hotel, then a big welcome home followed by the Three Wise Kings leaving me many presents under our Christmas tree! Not a bad start at all, considering that usually this time of the year I am in deep fear of getting beyond sick because of extreme crazy weather. This year the snow took its time to arrive, and the cold behaved until last week… My adventures have been mild, but not uneventful.
The first weekend of the year began with news that I would not have my private OT until some paperwork gets done… This is because now each time you get to the hospital then services stop. When you get out, services must be restarted (noticed not renewed), so I need a prescription so an evaluation nurse comes out to see me so she can give the go to my OT services… This is a process that is new to us, and that no one had bothered to let us know. So… I did not have my private OT then, and it’s been two weeks since that… Paperwork is still stuck somewhere. The funny thing is Mommy received the insurance service approval on Friday, and it had the 4 sessions for this month. Things that makes you go hmmm… Hopefully the private OT thinguie will be solved so it all is restarted by February’s beginning.
Talking about OTs… Vacation from school ended, and services from my school PT, SLP and OT are back. The new OT has helped me complete some crafts and has set some goals that run towards my being more independent and proactive in my own personal care. Whoa! Now, that sounds like mayor goals! I am very excited to see how the goals will come true. The most immediate thing is getting me to control my index and thumb fingers enough to get to open a toothpaste cap. May seem like such a simple thing to many people, but that is something that would mean so much in matters of the things I can do by myself. I look forward to work towards this big goal. Imagine, I’ll be able to help my morning and afternoon nurse with my own oral care! That would be way cool!
My SLP is drilling me with the communication screens… Talk about killing me with kindness! Well, not so kind… I understand why he gets so pushy, but the screens (and what I am asked to do) bore me so much! I know what they have… And I use it all when it suits me. I don’t like being asked twice for things, and I don’t like yes or no questions. I am trying to go along with it, but it is all very draining. At least the last couple of sessions integrated playing with my favorite Kai-Lan toys. I’m trying to lighten up… and get over it. I know how frustrated people get when they don’t understand what I want… I just wish they paid more attention to the details about me, so they would see I am not that complicated. I just get bored easily. Mommy added some daily choices so I can go beyond the main screen to the things I want or need. That should make it easier on me… it is much better to say exactly what toy, movie or game I want. I missed that. We’ll just use the simple task screens for the sessions, to keep them focused. I’m more open to this plan… My love for the Tobii is renewed. I will do my best to answer “on demand” even if I hate it… I pinky promise…
My PT has been coming as usual, exercising and ranging my whole body. Arms move, legs move… She makes me push and move my feet and toes. She makes me move my hands and arms, and is training my fingers to thumb-wrestle. I did not see the point of that in the beginning, but after using the joystick for the power wheelchair demo I have a good idea of where she is heading. My thumb and index fingers are moving and wiggling like crazy! And I am controlling much better whenever I make selections with my proximity switch (especially when it is positioned so I see the activation light… I gotta have my feedback).
On Monday the 9th I had an appointment for evaluation to use the Motomed Gracile PT machine. We went to Children’s Specialized for that, and although we are not happy about the Rehab people, this PT from the upper level was outstanding with me (her name is Sarah). She was not afraid of moving me or touch me, and assessed every inch of my body. I was pretty excited about it all, but did not expect to try the machine that day. I guess that when I heard that I was going to try it I kinda got a bit over the edge. Seems I aspirated and it all caused one of my typical RT episode scenes (which are common to me and my parents, but can scare the beejizes out of anyone else watching)... So, after the episode I had to stay reclined and go home, Mommy & Daddy would not put me high in the wheelchair after such a thing, and I needed to be coughalated and nebulized as soon as possible. So… there went the chance to try the Motomed before the snow and cold weather hit strongly. I knew that going to try something after being a whole week in the hospital was not a good idea, but oh well… “Foolish Hobbits”… We’ll return by May… hopefully… And that story shall continue…
The rest of the week was uneventful in matters of going out. I had a GI appointment but it was changed as snow showers were expected. My numbers (oxygenation and heart rate) have been a bit erratic and variable just as the weather and Mommy. All in all I have been well enough to complete my school projects (especially DeedeeLand, my personal version of CandyLand) and to get deep into the alphabet and the numbers and books and Martin Luther King, Jr. Mommy and Daddy got in contact with the social worker from our housing and will try to get a bigger apartment so I can have the mandatory space I need and my sister can get her own space (sardine living is not recommended at all). And my EIP meeting was cancelled as everyone had something better to do… I mean, everyone was tied up with something. It was rescheduled for next week…
Bear with my sense of humor.
The collar and headrest saga continues… Now, the seating company seems to have misplaced or lost the order… Apparently it arrived, but no one has found it. If I were not a nice girl I would say something naughty, but I won’t hinder my chances with Santa for next Christmas. On happier news, the ATP from that company and the guy from Permobil should come see me next Thursday for another power wheelchair assessment. Please cross fingers so no weird episode happens and spoils the assessment!
Mommy also contacted our new Department of Education case manager (the social worker) asking for ATP assessment. It came to her attention that I should be assessed by an ATP twice a month and that has not happened since classes began (all this time). Mommy also contacted Advancing Opportunities to see if they can assist me with that… A new saga has begun… Perhaps this will also take care of the video-conference I should be doing with the school…
Mommy contacted the creator of the exoskeleton for arms movement. He required a video of me seated in my wheelchair and moving/ranging my arms to see their flexibility. So, that video is also a next step to see if I could be a candidate for using the WREX from Jaeco Orthopedics. Cool stuff that could help me do a bit more of daily normal stuff… on my own. With my being sick I have not been able to show my ability yet, but hopefully next week I’ll be able to finally do it and send it to him.
Last but not least, Mommy submitted a request for Make A Wish, New Jersey chapter. I am all for Mulan and Pocahontas (my heroes, my strong ladies!), so I have high hopes for all that THAT could bring!
Is my life exciting, or what?
GOD: Thank you for everything You do for me. Let me be an instrument of Your Peace and of Your Love. Do with my life as You will, I trust the big plan that You have for me. Thank you for surrounding me with just the right people and for keeping me alive and well. Help me soar, and help me help others soar. Amen.
Saturday, January 7, 2012
Feliz Dia de Reyes! I celebrated this very special Hispanic tradition at home. Yes, I spent 5 days at PICU but thanks to so many prayers and proactive actions I was sent home early in the week. On Monday I got a special visit, Pastor Bill and a missionary also named Bill. They had tried to see me at home, but found just Mommy getting ready to come to the hospital. It was nice to have a visitor... All these years I've never had a visitor (besides my first hospital stay here, when I met Ethan and Emily). They brought me two books, which I devoured. On Tuesday Nurse Mashaela came to see me, staying for a while so I got to laugh a bit with her silliness. After she went away, Nurse Marie also came to visit me, and she got me two balloons! I was so excited about them! She got just in time to see me get ready to go home. It was cool to roll around the hospital with the balloons on my hands. Mommy was very concerned about the time we went home (6:00pm) as the temperature was hovering on 17 degrees... I was wrapped up like a burrito, rolled into the van, and then hurried home. I had a quiet night, and as soon as next day I was up for my respiratory therapy, school class, and even occupational therapy. Everyone was praising me for my focused attention and happy disposition. Yes, I missed this all very much.
I have been in special respiratory therapies mode to make certain that I don't get sick again. Nebulizers each 8 hours using Duoneb, along with CPT and cough assist. Today I went to see my pediatrician for my second shot of Synagis. Everyone was relieved that the day was warmer (around the 50's), so I went to my appointment, and then went home without any other events. In this case no news is good news.
As I arrived home, I noticed that the water bowl and the rice that I left last night for the camels of the Three Kings were almost empty! I thought they would not eat the rice, but I guess they were that hungry! At first glance I saw no gifts, but then as Mommy turned on the light I noticed a blue sack almost hidden between the sofa and the tree... It was filled with gifts for Kali and me! That was awesome! Kali did not waste time and immediately grabbed two gifts (never mind that one was mine), doing a happy Ewok dance of her own.
I guess that I got so excited that I almost choked myself. I had to go into my bedroom for safety, but Mommy and Daddy brought everything to my bed so I could open my presents. I was upset as I wanted to stay in the living room to open gifts with my sister... But then I say she was already in my room, just playing with some cars and paying attention to what I was doing... Seems that I am the biggest entertainment she has... Sometimes THAT makes me wonder... I calmed down, and the gifts reveal began!
This definitively made my day! Jewelry, silly warm socks, t-shirts, table games (family game nights, hint hint), Squinkies (this time Beauty & the Beast for expanding my collection), pop-up books (yay!), coloring books with stickers, singing Jasmine (wow and gasp, very cute), my very own remote control solar system (I think Santa and the Kings had something in mind... Santa brought me a video of a field trip to the planets, and now I get this... Hmmm), a Kailan bubble blower (I'm wary of bubbles but love the dragon), and a talking Kailan (these last two adapted so I can play with them on my own! And the talking Kailan... Hypnotized! Mesmerized! This deserved an awesome! Loved her so much I coulnd't stop playing with her until more than half an hour, and only because I had not watched TV for the whole day!!!).
Wow! So many cool things, all to keep me quite entertained for a long time! I had caution with the bubble blower, and I discovered that I could use it to play with my sister... I trigger it, blow... and she catches the bubbles. It works perfectly (that way she stays away from my mask). Mommy mentioned adapting the solar system's control so I can use it with my switches... Whatever, I know I will love watching it spin. Thanks to my godmother for that one! I promise I'll share it with Kali! And thanks to my Grandma Millie, especially for the bling and the bed covers she made for me.
Mommy noted that she got a note from the Tree Kings saying some special Bible videos were on the way, along with some switches for my adapted stuff. They were in such a hurry, and misplaced them in another sack a bit far from us. They said they'll deliver the missing stuff soon, to have patience and hope. They said they will probably mail things... taking the camels on such long walks too soon may dehydrate them. I didn't get upset at that. I used everything with my proximity switch, and played with everything else. I watched Dora's Three Kings Day special twice. I am happy with everything I have, but most of all I am happy I am home.
Being in the hospital made me re-evaluate all things that surrounds me... so many things that not many people have. I have a family that will do anything for me, anything to make sure I am well and healthy and comfortable and happy and divalicious. Yes, it is annoying how Mommy messes with my hair in the mornings... but I really missed it... It is a drag to get up early for the mandatory respiratory therapy, but it is what has kept me well and alive and strong for so long. My classes are demanding, but thanks to them I have learned discipline and how to be focused. My therapists keep me awake when I want to rest, but show me the value of perseverance and being steadfast. Strangers show me the value of what really matters, being open and friendly and helping expecting nothing in return...
I have many things to be grateful for. God has surrounded me with just the right people to help me reach goals and dreams, and to help me complete the big master plan that He has written about my life. I get mad, I throw tantrums... but I do acknowledge what is important is invicible to the eyes, and I know that in the end no matter what you do Love is the way. May this new year bring many blessings to my life... change towards something better, change towards certainty and bliss, change towards growth and amazement.
Thank you God for the miracle of life, for family and friends. Keep on carrying me in Your arms whenever I need You, keep on smiling whenever I do the right thing. Grant healing and happiness to so many that are sick and in despair right now. Grant us all peace, serenity, courage, and wisdom. Amen
OUR THREE KINGS DAY VIDEO:
Monday, January 2, 2012
Still getting respiratory treatments/therapy every 4 hours. Medicines will be decreased to every 8 hours as I was fairly stable yesterday afternoon and night (these are the nebulizer stuff: albuterol, mucomyst). Feeling very tired, but putting up a good face. I hope I can be home for 3 Kings Day, but it all depends on how fast I can recover & heal. I miss being home so much!
My little sister makes mommy's and daddy's shift change quite noisy. At least she could stay around as there are not many kids at PICU, just 3 more. It was sad not spending New Year's Eve with my whole family... Mommy stayed the night. For the sake of safety, daddy stayed at home with my sister. Legend says that he slept through the night... I am glad that even if things have been rough good news and hope are around always. God keeps surrounding me with His Love and the love of so many people! I foresee this new year will be one of wonder, and even greater miracles.
"For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future. JEREMIAH 29:11