I thought I would have to teach my daughter about the world; turns out I have to teach the world about her. They see a girl who doesn't speak,
I see a miracle who doesn't need words.

Wednesday, January 27, 2010

Zach's HALF Birthday

So Zach's school celebrates 'half' birthdays during the year for the kids whose birthday's fall in the summer months. In Zach's class, when it's your birthday week, or half birthday in his case, you are Star of the Week, you bring in a poster board with all of your pictures, you make an all about me box and most importantly, you get to bring Crocky home from Friday until Tuesday. Crocky is the classes stuffed crocodile and you take him wherever you go and journal about his experience at home with you.

Friday night Zach and Crocky played the Wii...

Zach really wants a dog - it's all he talks about lately. So Saturday we took Crocky to the local pound to visit the dogs.

Zach really liked this one dog - and when Zach would walk away the dog kept watching him and whimpering for him to come back...when it was time to leave the two of them just stood there staring at each other!

Saturday night we went to our friends Christy and Tom's while Zach had a play date with their son Murphy. After dinner the boys had "Happy Half Birthday cupcakes".

Sunday morning it was time to get ready for church - it's no secret that Zach loves to get dressed up for church, so he decided that Crocky should wear a tie to church!

Sunday afternoon we went to my sister's house to celebrate my niece Emily's 9th birthday.

Of course Alex was quite happy to get in her loving from Papa...
I think Crocky had quite an eventful visit - and even Max enjoyed Crocky's visit - he spent a lot of time in Crocky's bag.

This weekend we got ANOTHER 12-13 inches of snow and the kids are enjoying being out of school. Last I heard they were predicting another 20 inches for this weekend - in Richmond - seriously?!? I don't think the kids will be back to school for a month if that happens!!

Thursday, January 21, 2010

Swallow Study and Feeding Clinic

Yesterday Alex had her swallow study. The goal of the study was to see how her oral motor skills are and to basically see the mechanics of her tongue and swallow coordination. The last study she had was in 2006 and the test took over an hour and was ultimately inconclusive because they could not get her to swallow anything. Yesterday was a total different story - I got to be the one that fed her, the test took about 20 minutes and they were able to record swallow after swallow after swallow. She did great with pudding and honey consistency foods. She did not do well, however, with thin nectar like consistency liquid so at this point it's too dangerous for us to try and work with sucking from a straw with just plain water or juice. She had a really difficult time keeping it in her mouth and the tiny bit that she did swallow started to cross over to her airway, which would mean that she would most likely aspirate. So overall, it was a great study.

Here she is after the test, happier than ever!

Yesterday we also started back at Children's Hospital's Feeding Clinic. A little discouraging only in the fact that she's not gaining any weight at all. As a matter of fact, she weighs less now than she did a year ago. She's working a lot harder with walking and physical therapy, so I guess I can chalk it up to growth and burning more calories, but still disappointing nonetheless. I really don't want to bulk up her feedings that much more because I still have to be able to lift and carry her, but this is a big concern for the nutritionist. The therapist watched me feed Alex and then did an oral motor test on her, which showed that her swallow is delayed - which I already knew from the swallow study. Obviously Alex's complete physiology is delayed, so I'm not concerned with the delayed swallow - she's eating and although it's delayed, she can eat a cup and a half of her blenderized food in about 15 minutes, so I had to tell the therapist that's not something I'm concerned with, nor is that what I want the focus of her therapy to be. I really want to focus on her learning how to chew so we can can graduate from blenderized food. I also really want to work on her being able to suck from a straw. I'd love to be out and to be able to give her liquids from a cup rather than having to unbuckle her in the wheelchair, hook up her extension tubing and having to give her liquids through a syringe with a multitude of people staring at her. Another topic we discussed was Alex's excessive drooling. I would have thought that with eating she would be able to swallow her secretions better, but it actually got worse and she's probably going through 10-12 bandannas a day. A few years ago we had her on a drug called Robinul to dry up her secretions. It worked great and the drooling was so much less, but it was an injectible drug that we were drawing out of a bottle with a needle and then transferring it to a syringe to administer it through her g-tube. I was really concerned about the long term effects since we weren't using it the way it was supposed to be administered so I stopped it. Yesterday I learned that it now comes in a pill form so I called her pediatrician this morning and we're going to get her started back on that and see if the results are as good as they were in the past. Overall it was a good appointment and I'm anxious to see how she progresses.

Last weekend I took advantage of the long holiday weekend and went to New York with my girlfriend. I was really on the fence about going and felt guilty about leaving the Aaron with the kids for four days. I will never forget about a year and a half after Alex was born my mom and I had taken her to the pediatrician and he took one look at me and asked if I was getting time alone. My mother told him she had offered time and time again to watch Alex and encouraged me to do something by myself, but I just couldn't do it. I thought, how can I go out and enjoy alone time when all I am going to do is worry about her and worrying that no one can care for her and know her needs better than I could. The pediatrician told me that I was not going to be as good of a mom as I could be if I was exhausted all the time and not taking anytime for myself - and that I needed to take a break and come back refreshed and a little less stressed every now and then and that I was actually doing Alex a great disservice. I never forgot that - and although it was hard in the beginning, he was exactly right. I do feel more refreshed when I take a break and come back to the day to day grind thinking, I can do this! So I finally decided to take the trip and I'm so glad I did. I had not been back to my home town in over ten years. I saw and stayed with very dear friends, and I actually reconnected with my childhood best friend. We talked and laughed as if no time had ever passed and are making plans to see each other again in a few weeks.

Wednesday, January 13, 2010

Adding More Therapy

Well, I FINALLY got a call from the feeding clinic after being on their supposed "waiting list" for over a year and a half and Alex is slotted to start Feeding Therapy every Thursday. While I know I should technically be excited about what this means for Alex's feeding progress, I have such a bad taste in my mouth for the clinic that I'm trying really hard to go in with a "clean slate" attitude. Alex's Speech Therapist that has been working with her feeding therapy with me is pregnant and leaving for maternity leave soon so I guess the timing really couldn't be better. I couldn't be more happy with Alex's progress on eating her blenderized diet - and while she eats three full meals a day by mouth, we really still have a long way to go as far as getting her to be able to chew, and to be able to suck and swallow from a straw to drink. All of her fluids right now are given in her feeding tube after she's had a meal. So what that means as far as my schedule goes right now is Monday's are Speech Therapy, Tuesday's are Physical Therapy, Wednesday's Zach and I attend Wednesday night classes at church, Thursday's will be Feeding Therapy, Friday will be the designated doctor appointment days, Saturday is our family day where we try and do something fun as a family and Sunday we go to church and then spend the afternoon with my parents. I'm kind of feeling a bit overwhelmed right now with everything on my plate! Alex's respite worker, Jennifer, has worked every day for the last week, including the weekend, and I can't tell you what a God send that's been because on top of working and running to all of the scheduled therapies, there's still the normal day to day stuff like grocery shopping, haircuts, school work for Zach, preparing all of Alex's meals, packing Zach's lunches, laundry, etc. etc. that still need to fit in somewhere. I also tend to pile a lot of guilt on myself and I'm honestly trying so hard to not let Zach feel like he's getting lost in the shuffle and having him have some kind of routine or normalcy that he can rely on.

Yesterday Alex's physical therapy session went just as well - again she walked for over 55 minutes and her maximum number of steps at any given time was 70! She had a 9 minute 'nap' at school so needless to say she was completely exhausted when we got home. She's got quite a few things in the works right now as well - we have to make her an appointment for orthotics because her back brace needs to be adjusted, we're trying to schedule a swallow study to see what the mechanics of her suck/swallow are and we're having more blood work drawn to check her L-Carnitine levels to see if she's deficient, which could explain her low tone. I'm also starting the research phase of putting her on a Gluten and Casein free diet, but that's all I have time for right now so I'll post more on the L-Carnitine and Gluten and Casein diet later...

Tuesday, January 5, 2010

Wow, Wow, Wow!!!!!!!

I got my wish! I got to see Alex have a phenomenal Physical Therapy session!!! Aaron had a class today so he couldn't drop her off - I got nervous that I was going to miss her session beacuse I had to get Zach, but thankfully my girlfriend Noreen picked him up from school and took him to her house for a play date so I could pick Alex up from school and take her to therapy (for the record, Tuesdays are my absolute least favorite day - it's a total marathon day of running and juggling). Anyway, I was so excited to pick her up from school and get her to therapy - and she totally did not disappoint me!!!!

Shannon and I were talking about how great her intensive physical therapy session is going to be for her in March - it will be three solid weeks of three hours a day reinforcing all of this walking. She walked for 55 MINUTES today! She had to have taken over 400 steps today - the consistent minimum amount of steps she took at one time was THIRTY FIVE! And her highest total was SIXTY FIVE STEPS!!!!!!! She knew she did good too! She didn't fuss the entire session - in fact, she was even smiling! I can't tell you how happy and excited I am - my heart literally felt like it was going to leap out of my chest! I left therapy today probably the happiest I have been in a very long time!!!!!!!

Here she is in action - you'll notice in the video that Shannon is holding the bottom of her brace - but it's not to give her any kind of support, it's because the brace needs to be widened and it slips so she's holding it more so that it doesn't slip down and pull out her feeding tube. Occasionally we (I walked her the last walk of her session) can use the position at the back of the brace to help her step over her hip (if that makes any sense!) but the steps are all hers!!!!

She has come such a long way and I am so, so, SO proud of her!!!

Saturday, January 2, 2010

Happy New Year!

2009 was a good year for Alex. We only had one hospitalization, her strength has increased dramatically, she began to eat and is barely on her feeding tube and cognitively she's made great gains. I'm praying 2010 is even better and by this time next year she'll be walking with a walker!

We had a really nice night at home with friends and the kids really seemed to enjoy all of the commotion. Both were asleep before midnight, but they had fun!

I hope each of you have a blessed 2010 and it's all that you want it to be!