Friday, November 27, 2009
I Am Thankful For .......
Sunday, August 23, 2009
See ya Later, Alligator!
Classes start tomorrow and I don't know when you're going to hear from me again. I guess this is where I admit to myself that I'm gonna have to let some things slide for a bit. I think this blog falls under that category. So, for everyone that's going to have a birthday over the next 16 months (and if my calculations are correct, that should be everyone) ..... HAPPY BIRTHDAY! To everyone that is getting married, having a baby, starting a new job, or any other amazing milestone in your life in the next 1 1/2 years ..... CONGRATS! And if anything bad is happening in your life and you need someone to listen to you or to vent to then give me a call around 2am. Sounds like I'll be up.
I'll leave you with a few pics from the summer. The first 4 are from the Great Urban Race that I did with Patty back in the beginning of August. We had a blast, completed all our tasks and came in in the top 50% of over 500 groups. Next year .... NUMBER ONE! The picture of Char on the see-saw is from our weekend with Kari, Teddy and Isabella in June. Doesn't she look like such a little girl there? She's not my baby anymore (Oh, who am I kidding ... I put that one in there cuz of the cleavage shot). And the last pic is from this past weekend where Char spent some time with her Yia-Yia and Papa (my parents). As always, she had a wonderful time, and Brian and I got the chance to get things in order here before our lives change big-time.

But then again who knows .... maybe they're blowing it out of proportion and I'll have plenty of time to post on the blog. However, I do have 7 chapters to read for tomorrow and class hasn't even started yet. Guess I should get on that!
Wednesday, August 19, 2009
Watch Out!
The next lessons we will attempt to conquer are:
1. Wheelchair Etiquette 101 - where you learn that Ozzie and Bart really don't appreciate you hauling ass over their tails, and that you should say "excuse me" BEFORE you bump into someone
2. How to Handle Hills - when you weigh 23 pounds the bump in the sidewalk constitutes a hill
3. Wheelies - I don't want to be around for that one. Brian, just make sure she's wearing a helmet, ok?
Brian took a quick video of her right after we first put her in. Enjoy! (And, yes, we know that's she's missing a footrest in the video. Don't fret, that has since been correctly attached).
Friday, August 14, 2009
Day 10 of Recovery
Yes, I've tried the bottle, a straw cup, a regular cup, and even an eye-dropper. She doesn't want anything to do with those methods. I'm actually starting to wonder if this is where she goes off the bottle completely. Dear God, if that's the case then please have her choose the straw cup as her vessel of choice. Anything but the spoon!
I can tell she's still in a bit of pain, and the aversion to drinking reflects that. HOWEVER ..... her desire to eat 2-3 pizza crusts tonight, WITHOUT GAGGING, leads me to think that she's pulling some kind of "2-year old I'm not gonna do want I don't want to do" crap. Don't get me wrong, I'm thrilled that she all of sudden wants to eat stuff that she couldn't eat a few weeks ago, chew it like she's been chewing all of her life, and then swallow it down with no problems. I'm just wondering what's going to be our "normal" when we get "back to normal"? Is this where she becomes like other 2-year olds and eats a normal amount of food and I can take her off the super-expensive, high-calorie formula? That would be nice.
For the 1st 3 days she was home a home nurse came by and gave Char IV fluids to help keep her hydrated. That took a lot of the pressure off of my shoulders and I didn't have to be such a nazi about pushing the water. I even got the chance to flush out her IV with some saline and heparin after the IV was done. I had so much fun doing it! Sounds like I have definitely picked the right career path. Otherwise, Charlotte and I have been reading books, playing quietly with her toys, doing lots of snuggling and lots of watching Elmo in Grouchland. I think it would be less painful for me to stick a fork in my eye than watch that movie again. However, I will probably be faced with that choice again tomorrow and will most likely go with the latter.
10 days at home with my daughter has been trying, but AMAZING. We have never snuggled, cuddled and bonded like this before. One thing that's always kind of bugged me is that I don't always feel like "mom". I'm a physical therapist, speech therapist, feeding therapist, occupational therapist, nutritionist, teacher, nurse, doctor, personal assistant, chauffeur, but not mom. These past 10 days I got to be mom. We haven't been working on anything, but her resting and getting her strength back. And that's been nice. At first when we scheduled the surgery I sarcastically thought to myself, "Oh, what a great way to end my already crappy summer". But, now as I'm only a little over a week away from starting nursing school, I realize what a great opportunity this was to spend an ungodly amount of quality time with my daughter. I sure do love that Peanut.
Thursday, August 6, 2009
Post-op Recap
She stayed in the hospital last night, and, thankfully, came home this morning. We had to share a room with another family and it was difficult to get her to sleep with all the constant chatter, lights going on and off, and all the alarms beeping. Not that any of it was anyone's fault, but it's still annoying.
She was getting IV fluids at the hospital and they left the IV in so the home nurse can come by and give her fluids if necessary. I can tell you right now it's going to be necessary. There's no reasoning with her about swallowing her juice, soup or ice cream. We managed to get a bit of broth and juice in her today, but not enough to keep her hydrated. On top of the usual, excrutiating sore throat that comes with a tonsilectomy, there's also the issue of Char's low muscle tone, which is restricting her swallowing as well. You know how when you get a bad sore throat your swallowing is much more labored and you kind of have to think about doing it? Well it's that much harder for Char since she has to think about swallowing on a normal day. But as today trudged along we started to notice that she was swallowing a little easier. Probably a combination of time, drugs, and limited energy for resistance.
Having the IV left in her arm is also posing another issue for Char. She can't crawl. She's totally immobile until they take it out on Sunday. That was tolerable today since she still didn't have any desire to do anything except watch Elmo and Patti LaBelle (they sing the ABCs together on Sesame Street - another reason why I question if she's mine, she likes gospel music. It's always funny to see people's facial expressions when she asks to watch Patti LaBelle, "Did she just say Patti LaBelle?" "Yep"). But the next couple of days might be a challenge. The IV is on her left hand and it's all wrapped up on this board thing. It might as well be a cast. Maybe I need to make it into some kind of stump-like thing that she can use kind of like a wooden leg ..... hmmmm ..... I'm thinking paper towel roll, plastic tubing, duct tape .... maybe I need to think about this a little more. Although it would be fun to see the nurse's expression when she walks in and sees that. You don't think she'd call DCFS, do you?
Tuesday, August 4, 2009
Surgery on Wednesday
I'm hoping they have wi-fi access at the hospital tomorrow, so I'll try and post an update tomorrow night if I can.
Char's a strong girl, and I know she'll be just fine, but I can't help but be nervous with her going under general anaethesia.
Monday, July 20, 2009
Is That a Couple Bucks Burning a Hole in Your Pocket?
- Each ticket costs $100
- Only 600 tickets are sold (so that means your chances of winning are pretty good)
- 1st prize is $10,000, 2nd prize is a 2009 KIA, 3rd prize is $2500, 4th prize is $1000, and 5th prize is $500
- You don't need to be present to be a winner
- Proceeds from the raffle go towards helping families with limited income and/or limited insurance receive affordable, intensive motor training
If you, or perhaps a few people together, are interested in purchasing a raffle ticket(s) please email me at achellyer@yahoo.com and I can arrange to get one to you. It is because of the donations received by the Center that they are able to offer parents a reduced hourly rate for therapy. And it is because of these donations that we will be able to afford to continue sending Charlotte there when our insurance allotment runs out (which by my calculations for next year will be before the end of January - c'mon Obama ... let's get that new healthcare system in place).
If you would like to know of other ways that you can help out or donate to the Center please let me know! Thanks for taking the time to read this.
Saturday, July 18, 2009
Walk This Way
Every day when Charlotte arrives at the Center she walks in with one of the therapists, and heads over to the potty where she "does her thing". I took some video of her walking during the first week of her summer camp back in June and then took another video this past Friday to see the difference. Here's the video I took on Friday. Maureen (her PT) hardly touched her at all. This is nothing short of amazing! Brian predicts that by this time next year she'll be zipping around the house in her walker and we'll have a hard time keeping up with her. And to keep things in perspective, note that at this time LAST year Charlotte had not even sat up by herself yet.
Received word from the wheelchair rep that her wheelchair has been ordered and should ship in the next week. Keep your fingers crossed that maybe we'll get it by the end of the month!
Wednesday, July 8, 2009
Look Mom! No Hands!







I hope that everyone had a great 4th of July weekend. I took Char over to my friend Kathy's house to watch the fireworks just down the block from her place. Last year I don't think Char really cared one way or the other about the fireworks, but this year it was all about "GREEN!", "PINK!", "WOW!". It was a great night.
Quick side note - I'm sure people may have noticed through this post that I say "we" every now and then. Just thought I'd mention that no matter what happens going forward Charlotte will always have a "we", and I would want it no other way.
And speaking of Wii, have you tried Wii? OMG! I bought one for myself a few months back and I am completely addicted to rockin' out/jammin'/whatever you call it, on Guitar Hero. If anyone wants to come over at any time for a head to head Guitar Hero-off ..... IT'S ON!
Thursday, June 25, 2009
30 Cheerios
Charlotte eating more is going to result in her taking in more nutrition and eventually less need for her to be on the insanely expensive formula that we've been giving her. Per the GI doctor, we may be able to take her off by the fall if things keep changing as fast as they have been in the last week. That news made my pocketbook do a little jig of joy. That has to be the most expensive formula on the market. Check this out though .... I belong to a few user groups online made up of other families with special needs kids and sometimes people post things that they have to give away. Recently I was the lucky first responder to a post about some free Elecare
(that's the name of the expensive formula) and the people giving away a couple cases said all I had to do was pay for shipping. Well, imagine my surprise yesterday when 4 1/2 cases arrived at my door, and all it cost me was $30 for shipping. That's $800 worth of formula for only $30! That family is getting a HUGE thank you card from us. Is it true? Could my luck be changing?
On Monday, Char started her summer camp at the Center. She's going 2.5 hours a day, 5 days a week for 4 weeks. It's almost like boot camp for toddlers. I've already seen her strength improve in her legs and we're only on day 4. This is a testament to how great it is for these kids to get such intensive therapy. She's still getting her individual PT, OT and Speech on the side, so that has resulted in no time for naps. Which means no naps for mommy, either. Booooo!
Char and I went to see my college friends Kari and Teddy and their daughter Isabella (6) in Syracuse, NY this past weekend. Charlotte was so excited to hang out with Isabella, and as always the Avramov family showered us with love, good company, awesome food and some great wine (the wine was for me, not Charlotte, no need to make any phone calls). And keeping with the theme of firsts here, Charlotte went to her first indoor playground at one of the local Syracuse malls and totally held her own amongst all the other kids. With Isabella's help Char also had her first experience on a see-saw. She even managed to do it all by herself a few times, sitting up straight and pushing herself up to the sky. It's so cool to see how exciting the simple things are through the eyes of your child.
Char and I flew to Syracuse. I held true to the promise I made last year that I was not going to make that drive again with a small child (or any child, for that matter). I was so nervous about flying with her by myself. The trip there was a bit stressful. I had to bring a car seat with us because Charlotte still doesn't have the core strength needed to sit in an airplane seat by herself. So, let's imagine I'm one of the last people to board a plane (no, there was no call for people needing special assistance), and I have a car seat attached to my back, a backpack on my front, Charlotte on my side and somewhere in there a cooler with her meds and formula and Grover the stuffed animal. Did anyone offer to help me? Nope. But that could have been because I hit almost every passenger in the head with the car seat as we made our way to the back of the plane. Thank god, the ride back was the total opposite. I made sure we were seated closer to the front, we boarded first and I asked for someone to help me carry all our gear. It's always good to be able to learn from those awkward moments in life.
Since coming back from Syracuse I've been doing really good. Did a lot of self-reflection there and have done quite a bit more since. Learned I need to work on myself quite a bit. Learned that I haven't always treated other people as kindly as I should have. Learned that things aren't always about me (what's that all about?). Learned that I need to do a better job of covering up my gray. I'll take care of that on Saturday morning. I'll start working on the rest Saturday afternoon.
Monday, June 15, 2009
Welcome to our New World
Charlotte Martina
The Center for Independence, which is where Char goes for her group PT and OT, thought it would be a good idea to increase her sessions to 3 mornings per week. My little girl is going to "school" more than some 4 year olds! And don't forget that she's still going to Child's Voice the other 2 mornings per week. But Charlotte seems a bit disappointed on the odd mornings that we don't have to go anywhere, so she must be enjoying it. The increase in therapy has made a huge difference as she is now pulling herself up to a stand more frequently and even took 10 steps all by herself in her walker not too long ago! Earlier this year I had hoped that she would be able to move around the house by herself using her walker by her 3rd birthday. That very well could be a possibility.
In April I started the process of ordering a wheelchair for Char. Since "things with wheels" aren't covered by the State Early Intervention program I'm having to go through our insurance to get the chair. God help me. I will be so pleasantly surprised if this thing gets here by the end of the summer. I try and be positive about most things in this life, but dealing with health insurance companies is not one of them. The rep from the equipment company brought over a demo of the wheelchair and OMG is it cute! It is basically the size of a doll's chair and it is going to be perfect for her for getting around in public. Now, this isn't a motorized chair, I'm talking about a wheelchair that she will have to maneuver herself with her own muscles. I've always said that I would never get any of my kids one of those stupid battery-powered mini-cars/jeeps, and I'm not going to compromise my values now. While it was difficult for me to digest at first that Char is not going to be able to walk independently as soon as I had hoped, I quickly realized how great a wheelchair is going to be for her. This will give her the independence that she so desperately longs for when we're out in public. And even when she is able to walk it will be awhile before she has the stamina to keep up with other kids. So a wheelchair is going to be great for school outings, zoo trips and even cruising down the hall at school. It will also strengthen her arms at the same time. See, it's just a great idea on so many levels. Now, if only the equipment company and the insurance company could get their butts in gear .... grrrrrr
Char's feeding issues are still there. Progress has been slow. There's progress, but it's definitely been slow. She still gets most of her calories from the special formulas and drinks that I give her. She eats three meals a day, but they consist of mainly pureed foods. We've been working on eating small bits of scrambled eggs, bananas, carrots and avocados with her lately, and she seems to be enjoying the idea of food more. Chewing is still very difficult for her and I have to remind her with every bite that she has to chew the food, and I have to talk her through moving it around her mouth. I'm not gonna lie, it's hard. Eating is always something that I thought was completely natural and thought should come so easily. But for Charlotte that's not the case. No one has completely figured out what the root of the problems are. Is it because she was on the ventilator for so long when she was in the NICU and she was fed through a tube for so many months? Does she have a total aversion to having things near her mouth? Sometimes that's true, but then you give her peanut butter and she goes to town on it. Is it because of the texture of the food? Sometimes she hates texture and sometimes she loves it. Is it because her facial muscles are so week? Partly, but there are times when she chews like a pro. But most of the time she won't. Is there something physically obstructing her esophagus or the back of her throat? Maybe. And that might be the next path I have to examine. I've kind of been putting off doing a swallow study with Charlotte, mainly because they're not always very conclusive and I hate to put her through a medical procedure if we don't have to. And what I really hate is having to make these decisions. HOWEVER .... she had the priviledge of enojying a WHOLE strawberry the other day and there's been several strawberries to follow. Char may have turned a very important corner here .... I'm just as excited as you are!
Char is still on the dairy and soy-free diet. I tried giving her some soy yogurt for a few weeks back in March, but she started throwing up more often and I had to pull the plug on that experiment. I'm still keeping my fingers-crossed that this is something that she will outgrow. Thank god for coconut milk yogurt! It even comes in chocolate flavor.
Amanda Christie (one time I had an id card that only had so much space for my name, so it came out Amanda Christ - I'll say no more)
Did I ever tell you that I got an A in Anatomy and Intro to Computers last fall? And THEN I got an A this spring in Physiology and Intro to Sociology? Those grades brought my GPA to a perfect 4.0 in my nursing prerequisites and brought me to the end of my classes at the community college. Now the real work begins, and on August 24th I will be officially starting nursing school at West Suburban College of Nursing. I turned in my application back in January only to find out that the program options had changed. Instead of having a night and weekend program that went for 20 months they made it 28 months!! I had already thought that 20 months of being away from my daughter on nights and weekends was going to be too much, but 28 months, that's just crazy! So, at that point I changed my plan and went for the 16 month fast-track program that they offer. This means that I'll be done with school in December 2010, but I'll be in school full-time during the day. And THAT means that we needed to find someone to watch Charlotte during the day for us while I'm at school and Brian's at work. That was quite an adventure in itself. Brian and I interviewed quite a lot of people, and I spoke on the phone with some real winners, but in the end we found a great nanny for Charlotte. Lauren is going to start watching Charlotte Mon-Fri the week before I start school. I thought it would be a good idea to have a few days cross-over between the two of us so that Charlotte and Lauren could get acquainted and so Lauren could get used to Charlotte's insane therapy schedule. I'm sure you'll be hearing about Lauren more when her and Charlotte start hanging out more often.
