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.

Monday, September 28, 2009

In The Hospital

Only this time it wasn't Alex...it was Zach.

I have to say the quick turn of events truly scared me. I've been pretty well prepped in crisis modes with Alex and LOTS of hospitalizations with her. But to experience it with my "typical" kid was pretty scary. And it literally came out of no where. Wednesday night he started with some sniffles, nothing major. He got up Thursday and went to school. He was a little emotional going into school and wanted to go back home - but that was chalked up to the "kissing episode" in my last post. Apparently when the little girl kissed him on the playground, some of the kids were teasing Zach about it and he was NOT happy about that. But by 12:45, the school clinic was calling me that Zach was there and that he had a pretty serious, uncontrollable cough. I left work and went and picked him up. We got home and I checked his pulse ox (it's a machine that measures how much oxygen is getting to your lungs) and started a breathing treatment.

He kept saying that he had a headache and that he wanted something cool for his head...

At 8 o'clock he went to bed as usual. At 11:15, he was coughing pretty bad and I went in to his room to give him some water and put his sheets back on him - only he cried and said that the sheets were hurting him. His breathing was pretty labored so I went and started another breathing treatment. Aaron and I stayed with him in his room and by 1:00AM his breathing was getting worse, his lips were turning blue and he had a temp of 103.5. He said he couldn't breathe and I have to say I freaked - I told Aaron I was calling 911, but Aaron calmed me down and said he was going to drive him to the ER. He called ahead and one of his buddies was working off duty up there so by the time they arrived a room was already waiting for them. The nurse said it was a really good thing we brought him in, his pulse ox was down to 91 and he had asthma induced pneumonia and he was admitted 45 minutes later.

He was so brave - didn't even cry when he got his IV put in. He stayed in the hospital one night and came home on steroids and anti-biotics. I took him to the pediatrician today and he's on the mend. What a week - it started with Aaron and ended with Zach. I think I got myself so run down that I came down with something myself. I never even got out of bed yesterday - I don't know if I've ever stayed in bed an entire day. But I slept A LOT, so I obviously needed it!

Wednesday, September 23, 2009

Catching Up!

Has it really been 10 days since my last post?!? Where does the time go?!?

Second week of school and all is good! Zachary LOVES kindergarten and comes home with so many stories - it's quite comical. Today he told me a little girl kissed him on the playground but she was NOT his girlfriend.

Alex has had a great two weeks. It's really quite obvious that she loves to go to school. And the bus ride just makes her day. She has a new bus driver and bus aide this year and they are WONDERFUL. They love that she squeals and is excited for the whole bus ride (of course, I'm sure they've invested in some ear plugs at this point!)

The other day Zach was laying on the floor with Alex and she rolled over, put her arm around him and 'kissed' him on the cheek. It was such a touching thing to witness and Zach got so excited he jumped up and said "Mom, DID YOU SEE THAT? She kissed me like a real Sissy!!" So that was heartbreakingly bitter sweet.

It's so nice to see them forming such a sweet bond. Zach is very attentive to her and she loves to watch whatever he's doing. She laughs at him when he's being goofy and loves to reach out and grab him when he's not paying attention to her.

I cannot believe how big she is getting! It's really exciting to see how her obvious awareness to what's going on around her has evolved over the summer. Yesterday at therapy she was in her walker and Shannon told her, "You just have to get around this corner Allie Bean and you're all done"...well damn if Alex didn't crane her neck around the corner to see how much farther she actually had to go! And just today I had her prop sitting (she did TERRIBLE with sitting at therapy yesterday!) and we were playing with her favorite YMCA Elmo. It stopped and I said "Make it go Alex" and she reached out and grabbed Elmo's hand (you have to squeeze his hand to get him to sing). Then she grabbed him by the head and pulled him towards her and I said "give Elmo a kiss Sissy" and she opened her mouth really big and pulled him towards her!

She had a follow up neurology appointment this week and we discussed either changing one of the meds she's currently on (Tenex, which helps with her behavior and manic spells). Without going into too much detail, we talked about putting her on Risperdal, but after talking about it and doing some research, I'm just not comfortable with that right now. Basically all I really want to try and control is her self stimulating behavior, which is the constant chewing on her fingers and the hair pulling, which honestly she really only does when she's very excited. So for now, I'm going to split her dose and give it to her twice a day and see if that helps any. It's such a tedious balancing act when you're dealing with these types of meds.

One thing I'm MOST excited about is that she is eating so well and getting in all of her caloric needs during the day that we have completely stopped her nighttime feedings...how awesome is that?!? Of course if there are days she doesn't eat as well we'll supplement with a night feeding, but it's been almost two full weeks without a night feed! I'm just beside myself about that! The only downside is that I'm literally spending two hours a night in the kitchen blending the three meals she'll need for the next day and preparing Zach's lunch too. I'm going to have to come up with a better system.

Three quick funny Zach quotes from this week that just made me laugh out loud...

He got up the other morning by himself and came in the bathroom while I was blow drying my hair. He gave me a kiss good morning and I asked him if he needed to go potty to which he replied..."no, I just came in here to see your beautiful face"...seriously?!?

Last week he came home with his library book from school. We read it three times in a row and then he asked me to read it again and I said no, three times was enough to which he replied "why not, it's truly educational"...what?!?

Sunday night I told him it was time for bed because he had school the next day and he said "what, only two days off? When did that happen?!?" Mmm...get used to it buddy, that's how it's going to be for the rest of your life!!!

His first homework assignment:

Very proud of how he can now write his name in upper and lower cases!!

Hopefully it wont be another 10 days before I'm back...having two kids in two different schools is a lot harder than I thought it would be!

Sunday, September 13, 2009


I got a chance this weekend to go through the books I got for Alex on pureeing food. I went through all of the recipes and decided on what I wanted to make for the week and went to the grocery store and got everything I needed to get started. At 9:30 this morning I started pureeing all the fresh fruit and vegetables I was going to need for the week. The premise of the book is pretty much how to puree fruits and vegetables and disguise them in healthier recipes of every day foods so that kids eat healthier. Except for the two hours I spent at Zach's first Fall Ball T-ball game, I literally spent the entire day in the kitchen. I now have a nice stock of purred carrots, spinach, cauliflower, sweet potatoes, broccoli, avocado, blackberries, raspberries, blueberries, and strawberries.

I made frozen yogurt bars with blackberries, raspberries and blueberries, and also made brownies from scratch. The brownies are deceptive since they have carrots and spinach in them - sounds gross, I thought - but Zach has gotten to be such a picky eater that if it's not shaped like a chicken nugget or resembles any sort of vegetable, he's not eating. So I thought that if I could get Zach to eat healthier as well I could incorporate pureeing into his diet too. I thought if he actually eats these brownies, then spending the whole day in the kitchen would be such an added bonus.

He loved them!!!

Hee hee...after torturing him with green beans at dinner, he got two more servings of vegetables and didn't even know it!!!

Tomorrow for breakfast Alex will have two waffles with yogurt and fruit and for lunch she's having baked chicken, fresh green beans and mashed potatoes. It makes me feel so good knowing that all of the food she (and now hopefully Zach) is getting is all fresh and I know exactly what's going into all of her meals.

Today Zach started Fall Ball T-Ball. He was so excited to get to the game. He got up to bat twice and he nailed the ball both times on his first hit and hustled to first base - he did great! He got to play catcher for one inning too. Aaron's also an assistant coach on his team and he thinks that's just "totally awesome"! I'm glad he's found something that he really enjoys, even if he is starting to talk about playing football...uggh!

Thursday, September 10, 2009

Mean People Suck!

Warning...this is a total vent!!
I've tried to let this go all day....but as I'm sitting here listening to Alex's nigh time lullabies play as she's peacefully sleeping and oblivious to today's events, I'm still compelled to vent!!!

Aaron and I love our morning coffee...and we were out - so after I got Zach off the bus I decided to load her up in the car and head to Bed Bath and Beyond with my 20% off coupon to get coffee. Now, Alex LOVES to be out in the car and gets VERY excited and sometimes I do question why I am venturing out on my own with her, but I leave the house with her and Zach and she's screaming and yelling, biting her hands and pulling her hair - nothing out of the ordinary...but today she's especially excited and literally almost gets me in a car accident because she's so excited yelling and kicking that she literally kicks the back of my head rest as I'm driving. We get to Bed Bath and Beyond and by the time I load her in her adaptive stroller (I opted to leave the heavy wheel chair at home since the stroller was already in my car), she is squealing quite loudly as we walk in the store. I'm trying to cover her mouth and steer her stroller at the same time, keep Zach from the candy he's just spotted, and just get in and out of the store as quickly as possible - but, the aisles at the store are SO narrow and so not conducive to her stroller that she's extending her legs and pretty much knocking almost everything off the shelves that we pass. OK, I admit it, I'm human and I'm frustrated! I get my coffee and we leave. I'm now in a bit of a mood and I SHOULD have headed home after that outing debacle, BUT, I really wanted to go the bookstore and get a book on puring food. So...I head over to a local bookstore (to protect the innocent, I wont mention them by name.) I pull into a handicap spot and there are two people in the car next to me that happen to catch my eye and as I make eye contact they are shaking their heads at me, like how dare I pull into a handicap spot. So I get out of my car, open her door, open the back of trunk, pull out her stroller, and make a sweeping hand gesture at Alex, like clearly I parked in this spot for her, not for me...yet they are still shaking their head at me like I did something wrong. Whatever, they're ignorant...I continue on in the store. We get inside and Alex starts her loud squealing again because she's excited to be in the store. I try and quiet her down, look around for what I'm there for so we can get in and out without more of a scene. I scan all of the areas and see the kids section, art, music, travel, photography, book clubs, New York Times best sellers, self help, etc. - but not what I'm looking for. So I walk up to a salesperson and ask "Excuse me, but can you tell me where I might find cook books?" - he honestly looks at me, and then looks at Alex with the clearest look of disgust and says, "yeah, it would be behind you under the section that says cooking"...clearly I can't imply the tone of his voice, but I was literally shocked by his response. I'm already pretty frazzled, so I bite my tongue and walk towards the cook book section. I decide on two books, take Zach to the kids section, let him pick out two books and we head to the register to pay. We go to leave the store and I'm trying to navigate Alex's chair out the door, Zach, and my pretty large bag of purchases. There are two double doors that lead outside that I'm clearly having a hard time navigating and there's a woman just standing there STARING at us. I ask Zach (in her ear shot) to open the door for me. He's clearly having a hard time getting the door open because it's heavy and she's still standing there, staring...no offer of help. Zach finally gets the door half open and I push the rest of it open with her chair. There's still another set of doors we need to get through and she's still just standing there!!! Zach finally pushes the other door open and she says "isn't your little helper just so cute". Oh my god, I wanted to strangle her....would it have been so hard for her to help hold the door open for us?????????? Then my sweet Zach turns to her and says would you like me to hold the door for you too??? Sigh. Then, I finally get outside and Alex has kicked off one of her shoes that was about three feet from the car. I am CLEARLY struggling to get her in her car seat and THREE, not one, not two, but THREE people passed by her shoe, looked at me, looked at her and KEPT walking. Seriously? Would it have killed one of them to pick her shoe up and bring it to me???? In the span of 20 minutes, to encounter so many blatantly rude people really just set me over the edge. How is it my five year has more compassion than every one I encountered today???

If you're reading this and you've never encountered a special needs child, or their frazzled mom, and you happen to, please just open a door, say a kind word, or just smile, even if you don't mean it - believe me, it will make that Mom's day just that much more bearable.

Lawson Motley Police Family Assistance Fund

Back in December I had posted that Aaron and I had just come from the funeral of Lawson Motley who lost his battle with a brain tumor at the age of 2. Rocky and Heather, Lawson's parents, have started the Lawson Motley Police Family Assistance Fund in honor of Lawson to provide financial, educational and other services to active and retired police officer's and their immediate families that are suffering from a debilitating injury or a life threatening illness. It is the Fund's purpose to offer them support through the Lawson Motley Police Family Assistance Fund.

We are very honored that they have asked to include Alex on their website to help keep Lawson's legacy alive. If you would like to donate to the Fund, or just learn more about Lawson and the Fund, please visit www.lawsonfund.com

To view Alex's page, click here. And if you would like to join Lawson's Fund on Facebook, click here.

We are so grateful to Rocky and Heather for thinking of others and paying it forward.

Tuesday, September 8, 2009

Kindergarten and Second Grade

Wow, what a morning! I started my day at 5:45AM - having to have myself ready for work and getting two kids out the door by 7:10 and 7:30 makes for a busy morning! I bought Zach a new alarm clock yesterday so it would force him out of bed (he is just like me and is a night owl and not a morning person) but when it went off this morning he slept right through it! When I woke him he got right up and was excited about starting school. Aaron got Alex ready and her bus came a little earlier than originally scheduled at 7:05. It takes quite a lot of work to get her ready between starting a tube feeding, giving her her meds, getting her dressed, getting her in her wheelchair, doing her hair, etc., so every second counts when it comes to keeping her on schedule. Once she was gone I told Zach it was time for breakfast and he told me that he couldn't eat this morning because he was "too jealous" (he meant to say nervous!) He got himself dressed and he looked so handsome!

It was pouring rain and definitely not a nice day for our first walk to school. We met two of our neighbors as planned and headed up to school to start our first day of big boy school.

(Just a little excited!)

We gave lots of kisses and hugs outside the building...
and then he walked through the front doors without so much as a glance back at me or Aaron...

...and then the tears started - for me, not him. I've been anticipating this day for months and yet I still couldn't hold them back. My baby is in school, new milestones are ahead of us and I'm excited about that and I'm so excited to watch him grow and learn to read and write, but part of me just wants to keep him my little boy forever. He is so sweet and loving and compassionate and I just hope he stays that way...I have a very special bond with him and I guess I'm just having the separation anxiety, not him!

Alex on the other hand is old hat and heading off to school - she's my big second grader this year!! She was SO excited to see the bus this morning - she started squealing as soon as we left the garage! She LOVES going on the bus and going to school!

I was so anxious all day to know how Zach was doing at school...Audretta goes to school with Alex so all I have to do at any point during the day is call her and I get a full update on how she's doing and by 11:00 I knew she was doing great - it was the not knowing about Zach that was making my day seem really long.

Although we walk Zach to school, he rides the bus in the afternoon. In order to pick him up at school I would have to go into the building and sign him out from the gym. Doesn't sound like a big deal, but with having to take Alex with me, that means running in the door from work, loading the wheel chair in the car, getting her in the car, taking the wheel chair out, loading her into her chair, getting Zach, coming out, loading her back in the car, loading the wheel chair back into the car, etc. so it's really just a lot easier if he takes the bus. All the neighborhood kids take the bus so I was totally fine with it - plus he thought it was a really "cool" thing to do.

He was so excited to see me and Aaron waiting for him at the bus stop with all of the other parents. After all the kissing and hugging I asked him what he did in Kindergarten and he told me..."NOTHING"! What?!? I waited all day to hear he did nothing?!? We got home and I emptied his backpack and his lunch box still had everything I packed for him, minus a few grapes...seems we aren't that much alike because apparently when he's "jealous", he doesn't eat! Amazing how it took me five years to know that little piece of information about him. After having a long talk, he finally seemed a little more at ease and told me all about his day and that he's super excited to go back tomorrow - so I guess that's a good sign! Two projects he came home with today where a piece of paper that had printed on it My First Day of Kindergarten with the date, the school's name and his name with his hand print. Definitely going in frame! The second thing was a really cute book about my first day in Kindergarten that was printed out with a few pictures that he colored that has all the information about his teacher, the other teacher's he'll be meeting (art, music, gym, etc.) - a section for all of my new friends that lists all of the kids in his class. The last page says This is how I looked on my first day of school and Zach drew a picture of himself.

(I love how every time he draws a 'person', he gives them a forehead - he must have been so focused on that he forgot to give himself arms!)

Alex had a great day - she fell right back into her routine. She used her switches, stood in her stander, she ate breakfast AND lunch at school (BY MOUTH!). Alex is in the same class that she started Kindergarten in, but her teacher left at the end of last year and her new teacher is the student teacher she had last year...I'm really excited for her and all of the great things she's going to be doing this year! The one big difference is that she's not the youngest in the classroom anymore - three of the seven kids in her classroom graduated last year so there are two new Kindergartners in her room. Apparently she only had about a five minute nap at school, so by the time she got home...

...she was exhausted! She took over a two hour nap! Her friend Jennifer came over, she ate a big dinner (yes, BY MOUTH!), played for about an hour, we read a story and then she went to bed...being a second grader is tough work!!

The theme for Zach's school year is Oh, The Places You Will Go...and as we start this new milestone together, I can't help but think that there's really nothing more fitting.