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.

Saturday, August 29, 2009

Alex's New Wheels!!

We finally got Alex's bike Thursday and I LOVE IT! And it's pink..imagine that! I'm thinking that one day if she can communicate with me she's going to tell me that she's quite over all things pink!

The bike is a Freedom Concept and one of the things I love about it is that it has a locking mechanism so that the handlebars don't move and I can steer her from behind, so at this point she only has to focus on pedaling...which of course is great therapy for her. Shannon took her out for a test drive and clearly she loves it too!

Happy Girl!

Look at me!!


I can't wait for Alex and Zach's first ride around the neighborhood together!

Back in May I had posted about being devastated about the explosion at the Hyperbaric Facility in Florida that we took Alex to. Besides the hope the facility brought us, it was the only place I've been able to find that will treat for neurological purposes. A few weeks ago at my Mom's support group, one of my friends at dinner was telling me about a family she knew that had just come back from a facility in North Carolina. I did some research and found Metro Hyperbarics. I called and got some information and then received a few e-mails from the woman who operates the facility. Turns out she has a daughter like Alex and after being treated in Florida and seeing the great results in her daughter, they opened a facility in their home town. It's run by a doctor who is not only trained in HBOT but specializes in pediatrics. The facility looks amazing and so much more technologically advanced than the one in Florida. I can't tell you how excited I am to have found this place - I want to pack up and leave today! The fact that the facility is only four hours away is such a huge plus since travelling with Alex on a plane with all of the "stuff" that accompanies her is no easy task. I always had to ship things weeks in advance to Florida because there was just no way to bring it all on the plane. With Zach starting kindergarten it's going to be pretty much impossible to go anytime soon since we have to be there for two weeks straight, plus I still want to do more research, but I'm thrilled there's a new possibility!

I got a new camera this week (thanks Tom for the research and recommendations!) so I've been taking pictures of everything just so I can play around with it. The other day my girlfriend Dana was out shopping and she brought Alex and I those Turbie Twist towels they sell on the infomercials on TV...so I took this shot of Alex after her bath...

Bathing Beauty!

I've been trying to update my blog since Thursday but I've been having major computer troubles...the perils of modern day technology! I got up this morning and I did not feel well at all. I really just wanted to stay in my PJ's all day and do nothing, but I had some errands that had to get done. I was still feeling pretty lousy as we were out shopping and then something dawned on me. Every time I passed someone, they looked at Alex and would smile...not just one or two people, everyone. I'm not sure if it's not something I typically pay attention to because I usually am in rush mode and just want to get in and out...and sometimes I don't even look at people because Alex gets very excited when we're out and about and is usually laughing and squealing so loud that I quite honestly don't want to see the stares that I've encountered in the past. But all of a sudden I realized my daughter has a gift. She may not have an amazing singing voice, or the gift of athleticism or art, but Alex has the gift to make people smile. And I think that's a pretty amazing gift and am now smiling myself.

Tuesday, August 25, 2009

Mommy's Day Out!

Last Thursday was Zachary's LAST day of pre-school. Have I mentioned time is flying by with him?!? I took Friday off for us to spend the day together celebrating the new milestones coming up.

Zach and Mommy - yes that's me - after 15 years as a blonde, I opted to go back to being a brunette!

We had planned on an amusement park day, but the weather changed our plans. So we met up with my friend Dara and her daughter Jean and my friend Dana and her son Jonah. We spent four hours at Chuckee Cheeses (yes, four hours!).


Loving the video games!
Giddy Up!
Team Work! Zach couldn't reach the gas pedal so Jean helped him out while he drove!

Road Rage?!? :)

Boys will be boys...Zach and Jonah being silly!

All that playtime made us hungry so we headed over to the Japanese Steak House for lunch!

The kids enjoying the cooking experience!

The Mommy's enjoying our kids and our girl time!

After lunch, we left our friends and headed home to visit with Daddy and Sissy for an hour or so and then Zach and I went out on our own date to the movies. We saw G-Force in 3-D and enjoyed our time alone.

Zach and his 3-D glasses and popcorn
Mommy and Zach in their 3-D glasses!
We definitely had a great day together!!!

Today Zach met his Kindergarten teacher. She took him into his classroom and asked Aaron and I to stay outside while she assessed his readiness for school. Zach acted a little funny, I guess he was nervous. It's funny to see your child and how they interact in different social situations! But his teacher said he was more than ready -so we are very excited for September 8th!!

Alex is doing well - I had to reschedule therapy once again today due to a commitment, so we rescheduled for this Thursday...again, I'm so excited for this appointment because she's going to get her bike!!!

Alex is doing SO well with her eating. Tonight for dinner I blenderized some ground beef with green beans and had a separate bowl of peach apple sauce - she ate BOTH bowls in under 15 minutes - and she ATE every bite!!!! I am SO excited about the phenomenal progress she's making!!! We have a follow-up appointment with the feeding clinic next week, so I'm anxious to see how her weight is maintaining and to hear their thoughts on her progress. I have to say that I'm really proud of all of our hard work because we've done this on our own without being in the feeding clinic. Just goes to show that major persistence pays off!!

Thursday, August 20, 2009

Updates and LOTS of pictures!

I cannot believe how fast time is flying...in less than three weeks Zach will be in Kindergarten!! I just took him for his five year check-up - and he's growing like a weed! He weighs 43 and a half pounds and is 44 inches tall. The Dr. said if he keeps growing at the rate he has, he's projected to be about 6 feet tall...hard to image my little man a "big" man! :)

I honestly love taking him for his well visits because I get to answer questions and see different tests that I haven't experienced with Alex...sounds silly, I know, but I truly get enjoyment out of them!

Passing His Hearing Test

Growing So Tall!

Waiting For The Doctor!

We re-did Zach's room as part of his birthday present because he wanted bunk beds - so we've been doing a massive clean-up - he had a LOT OF stuff that needed to be cleaned out of his room. We still have a ways to go, but he's loving his new bed.

Miss Alex is still recovering from her illnesses...she's feeling much better, but the anti-biotics are messing with her stomach, so it's quite the balancing act. She is doing awesome with her blenderized diet and I've started really branching out and getting creative with what I make for her. Maybe someday a "cookbook" will be in our future!

She and Jennifer are having lots of fun together working on art projects, going for walks, playing and reading. I started working with Alex and a Go Talk communication device and Jennifer is going to start incorporating that into their playtime as well.

Crossing mid-line to get to the paint brush!!

Painting is so much fun!

I love the thumb in the mouth and the concentration!

Her stander is going incredibly well, she tolerates it so much longer than her old one. It's amazing how two pieces of the same type of equipment can be so different. I've been able to feed her in her stander, work on her communication devices, play - everything. We didn't go to therapy this week, but I'm dying to get there - her new bike is in...just in time for Fall!!! I'm so excited that she'll be able to go for bike rides with Zach around the neighborhood - I love that it's therapy in disguise!

Fun and Therapy!

Getting lots of love from Zach

For the last three Sunday afternoon's we've gone to our friends the Woodrum's for afternoons of swimming, barbecuing and fun. Jule and Alex are just so fun to watch together. They will sit and lay down together and laugh, giggle and 'talk' to each other. I could watch them for hours!! And Zach absolutely loves to go there and play with Jule's older sister Jean. He's had two sleep overs with Jean and her friend Emily and still isn't ready to come home Monday morning!

Alex and Jule in one of their many conversations!

Last Friday we had a surprise party for my sister's 40th Birthday. I haven't been involved in planning any surprise parties, yet in the past two and half months, I've been involved in three! My sister is quite the sleuth and you pretty much can't put much past her, but I think we surprised her! It was a fun night and Dana truly deserved an evening for herself.


Dana and Shane

My beautiful nieces Abby and Emily
Love this picture of my brother using my husband's head as a head rest and my sister-in-law trying not to laugh!

Time for cake


My Family

The DePasquale clan with their significant others!

I think it's been about 15 years since I've had a picture with just my dad!

Well, I think that's it for now! I'm having a date day with Zach tomorrow so I'm off to bed!

Wednesday, August 12, 2009

Poor Alex

I haven't blogged in the last week because Alex has remained pretty much impossible - and quite frankly, I was getting very frustrated and wasn't in the mood to blog about how crappy things have been with her! She's been very frustrated, agitated and overall grumpy. She ran a few little low grade fevers, her sleeps been off and she's just not been herself. Monday at speech therapy she just stared at her therapist and pretty much was non responsive to any of her requests. Even when they brought out her favorite toys, nothing - no smiles, no giggles, nothing! She was a little on the pale side and drooling like crazy. Tuesday for physical therapy Shannon was getting her session started and just put Alex into a sitting position and she started crying huge crocodile tears. Tuesday night she was up at 3AM crying and stayed awake. Wednesday morning she had what looked like a tiny rash, maybe 4 bumps on her face and she was itching her nose like crazy. So I decided to take her BACK to the Dr. (I had just taken her the week before for the same reasons and they said everything looked fine, except it seemed like her stomach was bothering her). Well, turns out she had every right to be frustrated, agitated and grumpy. She has impetigo, she's in the end stages of hand-foot-and mouth syndrome which has caused huge blisters in the back of her throat, and the beginning stages of an ear infection. I'd be grumpy too!!

I have to say I am actually very happy that they found something wrong. Obviously I don't want her in any type of pain, but to know something fixable is wrong, and it's not just her frustrated with life in general makes me happy. Three rounds of anti-biotics so far and ointment for the blisters on her face and she has done a complete 180 today. It was so awesome to come home from work and see her laughing, smiling and playing with Jennifer...my old Allie Bean was back!!!

Well I have a lot more to catch up on, but I have a lot to do this evening...

Wednesday, August 5, 2009

Of Course She Did!

Yesterday was Physical Therapy day for Alex. I never leave her alone at therapy because I love to see what Shannon does so we can incorporate the same type of things at home, and I never want to miss anything that Alex might do. But yesterday I had two quick errands to run, and with it being so hot out, I wanted to run and pick up Zach from pre-school so I wouldn't have to go back out later and have to take her out with me. I got back right as Alex session had ended and, of course, Shannon said "she had the best session ever!" - she took FIFTY, yes 50 steps in her walker!!!!!!!!!!!! And, of course, she chose to do it when I wasn't there!! Uggh!

We got a new stander last week for her and this one is a million times better than the one we had. It tilts and is so much easier to get her in and out of. Her old stander strapped in the back so if Alex leaned backwards far enough the Velcro would give out. You had to literally stand behind her the entire time she was in it, while trying to entertain her where the tray was in front of her...probably not a good visual, but it was a pain nonetheless! Here's her new stander, which is awesome - it straps in the front and has a solid 'board' if you will behind her so she's completely secure. She's tolerated the stander for an hour the past few days, compared to the 20-30 minutes in the last one.

I don't know if it's because we've been working her out in her cage (pics of the cage to come soon!), if she's been working harder in her stander or that I've been having her walk more that her muscles are sore, but she hasn't been herself the past week or so. She's pretty happy during the day, but come night time, she's been crying and very frustrated. Last night we were up almost the entire night and she was just screaming. It's so extremely frustrating that she can't communicate with us what's hurting her and there's no comforting her...it's heartbreaking actually. I've always said that I would take any of her disabilities, the not eating, the not being mobile, etc. gladly if I could just communicate with her. I took her to the Dr. on Friday just to rule out possibilities - ear infection, strep - they even catheterized her to rule out a urinary tract infection which is just so unfair she has to go through that just on the "what if". She did flinch and tense up when the Dr. pressed on her stomach so she told me to give her Mylanta for a few days and if she wasn't better to take her to the ER for x-rays. Sigh. I don't want to go to the hospital and expose her to x-rays just because. I want her to be able to point or sign or scream to say THIS HURTS! I'm so tired of playing the guessing game when she's obviously uncomfortable or in pain and giving different medicine based on what I 'think' is bother her. She looks at me when she's crying like why aren't you doing anything at it really just overwhelms me. Ok, off my rant. I'm happy about the progress she made yesterday, I just wish I would have been there to see it!

Monday, August 3, 2009

Alex's New Friend

Meet Jennifer!

Jennifer is Alex's Personal Care Attendant who comes each afternoon when Audretta leaves to play with Alex - and she has been a God send! Jennifer's sister, Sarah, works for our friends Dara and Jerry helping with their two girls.

Jennifer's entering her final year of college and is going to be a teacher. Including working for us she has three jobs and is one of the hardest working, well grounded college kids I've ever met. Jennifer TRULY loves Alex and it is so evident. I'm really so thankful that she entered our lives.