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!

Look Mom! No Hands!

No one else's hands, that it! Yesterday was awesome. While walking out of her summer camp session at the Center, Charlotte walked at least 30 feet, using her walker, without anyone having to hold onto her. The only thing Gaby, her therapist, had to do was help her to advance the walker forward every now and then. She's SO CLOSE to being able to do it completely by herself! It's so amazing how much stronger Charlotte is getting and how much more determined she seems lately to do things that all the other kids are doing. Unfortunately, I didn't have my camera with me yesterday (bad mom), so I brought it with today to show you some pics of how great Char looks when she's walking. She needed a little extra assistance today, but that's okay. We all need that sometimes.

I really feel that this new strength has a lot to do with Charlotte's new eating habits. Over the last week we've been trying to feed Charlotte the same things that we eat for dinner. If we have pasta with turkey meatballs, then Char gets the same thing (albeit on an extremely smaller scale - see the pic of her first "real" meal below). I still give her some kind of purée with the calorie powder, but I'm trying to make that a smaller portion of her meal so she wants to eat more of the GOOD STUFF. I'm sure people think I'm crazy for being so over the moon about Char's eating, but it seemed for so long that she was going to be eating nothing but soup and coconut milk yogurt for the rest of her life. I even got to order something off the menu for her the other day. Yes, ME, cheapo Mandi, bought something off the menu for Char even though I knew she would only eat 1% of the dish. Who cares? My kid's eating FOOD!

Recently, Charlotte's ducky bathtub bit the dust (i.e. he sprung a leak), and we decided that it was time to find a new way for her to take a bath. She was starting to outgrow the duck, but we didn't think she would be strong enough to keep herself above the the water line if we just let her free in the big bathtub. First we tried a modified "bath chair" by cutting the legs off of a toddler-sized plastic patio chair. That worked for a while, but it soon became very apparent that she was having problems with her feet getting caught on the bottom of the chair. I've heard from several other sources that kids with cp can get very particular about their feet, especially if their legs are affected by the condition (is it a "condition"? I don't know ... I hate trying to find words to describe stuff like that, so let's just go with "condition"). Imagine you have limited control over your legs and then there's these two crazy appendages that hang off the end - your feet. Your feet are going to get stuck under/over/in/on everything and I can imagine that would be frightening for anyone. The modified "bath chair" only lasted a few days, which means .... Charlotte has graduated to the BIG BATHTUB! I can't believe it. She's like a little fish in there and hasn't had any problems yet. Now we're wishing we would have done this a long time ago. My little girl is growing up!!

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!

30 Cheerios

That's what I've been telling anyone who will listen to me over the past few days. Char ate 30 cheerios at breakfast on Monday. Since then she's had pasta, raspberries, blueberries, lots of avocado and many more cheerios (for those overseas that's the round oat cereal in the shape of an "O"). It's official! I've had confirmation from her feeding therapist, the speech therapist and the GI doctor that this is the change we were looking for. She's actually taking the food in her mouth, moving it around on her own, chewing it and swallowing with no problem. I can see on her face with every bite that she's so proud of herself. And her daddy and I are so proud of her, too. This has been a long road, and there's bound to be some hiccups along the way, but it's such a great feeling to report that all of Char's hard work is paying off. Tonight ..... we try lasagne. Yummmmm!


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.

Welcome to our New World

I think it's been about 5 months since I last posted. It's been a bit hectic around here, but I still had plenty of time to drink my boxed wine, so I guess I don't have any excuse (I'm actually enjoying a glass right now, thank you very much). So what's been going on ......

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.

There's much more to tell about me and Char, but I need to go to bed. But know that I'm enjoying blogging again and I might just be back tomorrow to tell you about my trip to Québec City with my mom, my trip to Peru with Brian, and even going back to Kirksville for my sorority reunion in March (eek!). Now if I could just get myself to that gym again ....