Our Life With Alex

The Gift of Time

2012-02-07T12:26:00.000-05:00

“Time ~ the most precious gift one can give. Each moment is unique because it will never happen again…the gift of your time spent with others is the ultimate display of unconditional love.”

Robert W. Merriweather

Back at Christmas time Dana and I decided that we didn't need anything and to exchange just for the formality of it would be wasteful. So I decided to give her the best gift I could think of....time. I made her a certificate that entitled us to spend an entire day together doing whatever we wanted to be followed by an evening stay at a local hotel. Just her and I, no kids, no interruptions!

Her son was flying to New York this weekend to be with his dad so she asked if we would could cash in our girl time certificate. I checked with Aaron, cleared our schedule and we made a plan. We decided we both do enough running around during the week that we just wanted LAZY time...I don't know who was more excited about just doing 'nothing'!!

It's been a long time since I had such a relaxing time. We went out and had an awesome lunch, stocked up on some provisions for the hotel and went back to the hotel and talked and talked...threw in some mindless TV and then got ready to go out to dinner. We enjoyed an awesome band and talked and talked some more.

My favorite part...I got to SLEEP...A LOT!!! We got up Sunday morning, had some breakfast, watched some more mindless TV and took a NAP...oh how I wish I could incorporate one of those into my every day life!!!

I'm so thankful for my best friend - someone who knows me inside and out - someone I can be totally comfortable with just sitting in silence, someone who never judges me and just loves me for who I am - the good and the bad!

And it goes without saying that I'm VERY thankful to my husband who recognizes the fact that sometimes I just need a break and allows to me to decompress. He was QUITE happy to see me walk in the door though and promptly declared I was 'back on duty'!

Nutrition Appointment

2012-02-03T12:08:00.000-05:00

There are so many things I want to blog about but things have been so crazy and there just hasn't been time.

Yesterday Alex had her nutrition appointment at Children's Hospital. For some reason our supply order of her formula for her feeding pump had been cut and we weren't even receiving enough to give her the 2 cans a day that she gets - so forget throwing in extra cans if she doesn't eat enough during the day, or in the case for the last month or so being sick and having zero desire to eat. I love how insurance and costs seem to drive the supplies we get and not Alex's needs.

Anyway - so we went for her nutrition appointment to discuss a few things and to get an increased order for her formula. It seems like Alex has lost some weight, which doesn't really surprise me given her illnesses and hospitalizations since the beginning of December. BUT - she was in the 25% percentile for her weight a year ago and she's now dropped down to the THIRD percentile. I think that's a pretty drastic drop. She's grown a lot in the last year too and she's now four and half feet tall! Holy cow. Her current weight is 53 pounds and kids her age and height should weigh approximately 64 pounds.

We are having a lot of 'bathroom' issues, but that's not new - she's had constipation issues since birth. Because of Alex's overall low tone, especially in her trunk area, it only makes sense that her bowels are low tone as well. We have spent YEARS trying to figure out the right combo of medicine, fiber, water, etc. to keep the issues at a minimum, but it's still a constant problem. And to be honest, it is not fun for her or me on a weekly basis to have to deal with the problem. I'll leave it at that and spare the gory details. So we talked a lot about that and came up with some other ideas to help her there in addition to what we already do.

While there was some slight concern about her weight, the nutritionist is taking into account Alex's lack of mobility, meaning she's not as active as other kids her age so other than therapies, she's not burning as many calories a day as her typical peers. We also discussed how it's really important for us as her care givers to keep her at a healthy weight, but not let her get too 'chunky' because at the end of the day, her lack of mobility means a LOT of lifting for us. I can only hope and pray that we can get her walking with a walker sometime in the near future because the bottom line is she IS going to get heavier and heavier. Alex started physical therapy at the age of 13 weeks - I never thought at 10 years old she still wouldn't have any mobility. She can't crawl, she cant get herself into a sitting position, she can't pull up on anything, she depends on us for ALL of her positioning needs. Ugh, these are the things I don't like to think about.

January 22nd?

2012-01-22T15:46:00.000-05:00

Seriously.....January 22nd already? I have to say, so far I am NOT impressed with 2012.

Anyway....

Alex has not been to school since the first week of December! Between being sick, being in the hospital, winter break and now intensive physical therapy she's become quite the little delinquent :)

January 2nd she started her intensive therapy program at Richmond Hope Therapy. She's gone 5 days a week for 3 hours a day for the past three weeks - Friday was her last day. Considering all of the time she had been laying in bed between her hospitalization and illness, I am SO thrilled at how well she is doing - she truly never ceases to amaze me. When the thought of getting up in the morning to hit the treadmill makes me want to hit the snooze button, I think of ALL the hard works she's been doing and how sore she must be and I'm ashamed of myself!

She started her day with heat therapy and massage - and you know what?!? She HATES it! I would LOVE to start my day like that and she cries and fusses through the whole thing. Crazy girl!

Then it's time for Shannon to stretch her and she LOVES it....she seriously is wired backwards :)

Geez she is getting SO tall!

Look at that nice sitting! I've waited over 10 years to see her sit up all alone nice and straight...how crazy is that?!?

AND - she stood independently...ok, so it was only for 2 seconds, but hey, you have to start somewhere!!

Don't get me wrong, there are times she is flat out refusing....and I mean that girl can be stubborn!

But Shannon doesn't let her win and in the end she does what she's supposed to!

Even when she tries to bribe Tabitha with hugs to get her out of standing.

A lot of time was spent getting her to stand and walk. She's worked SO hard these past three weeks and she's been really tired. We purchased the cage they use a few years back and we have a great plan for her home therapy program.

She walked in two different types of walker - the first one was her pacer...she has a blue ball that she really likes and they were using that for motivation....it was really neat to see her keep reaching for the ball. She didn't really do much walking in this clip though!

She did much better walking in her Kid Walk - this time it was bubbles that were her motivator...

Hopefully one day we will be trading the wheel chair for her Kid Walk as her main mode of transportation!

HAPPY NEW YEAR!

2012-01-05T10:32:00.000-05:00

New year, new design...it only took me 5 months to do it! :)

Since Alex has been so sick we had a nice New Year's Eve at the house with some friends. We had planned on taking the kids out for a fun activity and then coming back to the house for some festivities, but there was no way Alex was going anywhere.

My friend Leslie bought all of these signs you can use as props when taking pictures - believe me when I say we had a BALL with them! And so did the kids....

Dana, Me, Leslie and Mesa

And Leslie also brought over fun hats and glasses!

Zach and Daddy....who was NOT feeling well at all!

The Morris Family:

Scott, Jeff, Leslie and Muffy's boyfriend Fred!

Alex had been running a fever for ten days...and pretty much all she was doing was sleeping. She was asleep at 4:30 on New Year's Eve so we were all VERY happy when she woke up and came to join us for a little bit AND we even got a smile.

Scott, Dana and Aaron

Scott, Leslie, Me and Aaron

This is the third year in a row (I think) that we've had New Year's Eve at home and I honestly LOVE ringing in the New Year with wonderful friends and our kids.

Happy New Year!!!

We got up pretty early on New Year's Day and Alex was just miserable. It was day eleven of running a fever and she was crying all morning. The pediatrician had said it was just a virus but she was clearly in pain and I just felt so bad for her. I was so concerned that she had pneumonia or the flu so we headed to the ER.

Alex has never shown any signs indicating she knew when she was in the hospital, but as soon as we got there she started crying, when they put us in the room and she saw all the equipment, she started crying, when they pulled the hospital gown out, she started crying....I guess cognitively that's a great sign, but I don't want her to be scared or upset when we have to go either.

This was not how I wanted to start the New Year!

They ran a ton of tests and took a lot of blood to make sure she didn't have a bacterial infection - despite being on Motrin she was still running a 101.4 temperature and had a rash on her chest. They took x-rays to make sure she didn't have pneumonia, took urine to make sure she didn't have a urinary tract infection and did the dreaded flu swab up her nose. At one point she had two IV lines in her hands - and she was NOT a happy camper with all of the poking and prodding they did. Her white blood count was elevated, but other than a blood culture that would take 72 hours to complete, they couldn't find a reason why.

Fast forward to yesterday and she is FINALLY fever free and getting back to her happy, eating self!

Poor Girl!

2011-12-30T10:36:00.000-05:00

I knew something was brewing when Alex was so sleepy on Christmas day. On Monday she was really tired and on Tuesday she started coughing a really wet cough and was running a 103.5 temperature. We took her to the doctor on Wednesday and they ran a strep test which was negative and just said she caught something viral. She's been so pitiful the last few days and it was quite concerning to me that she's been sleeping almost 19 hours a day, but I guess her body needs it. Even on Motrin and Tylenol she was still running a 101 temp and she has refused to eat anything by mouth...one HUGE benefit to having a feeding tube! She's been on breathing treatments around the clock since Wednesday and I think things are starting to break up. We had to pull her old suction machine and oxygen tank out and it's been a loooooooong time since we've needed any of that, which was a really great reminder of just how far she's come. It's actually been so long that I didn't have all of the supplies I needed so I had to call my friend Christy and asked her to 'borrow' some suction tubing - one of the many great benefits of having friends with special needs kids! :)

My other concern was that I had called her neurologist yesterday to get the results of her blood levels from her draw last week since she's now on higher doses of her seizure meds. The normal blood range for her medicine is between 50-100. We took her for her blood draw right before her afternoon dose so that she would be at her trough level (the lowest level that a medicine is present in the body). I was pretty alarmed when they told me that her levels were 117. I started panicking that if that was the lowest level in her body that meant when she was at her peak, the numbers were obviously going to be much higher. I started googleing toxic effects of the medicine because of the way it metabolizes through the liver and the number one thing was being lethargic. So is she lethargic because she's sick, or because she's toxic?!? Ughh! Her neurologist called me last night and assured me it was fine that her levels were higher than the 'standard', especially since the medicine is obviously working because she hasn't had a seizure since we've increased her medicine (KNOCK ON WOOD!!). He said our first priority was to get her over her illness and then for me to call him if she still seemed lethargic or we had any other concerns - so I feel 'slightly' comforted that he wasn't alarmed about her numbers and the fact that she's seemed to have perked up as of this morning. I'm praying she's turned the corner today so that we can enjoy the holiday weekend and start 2012 off on the right foot!

One more thing....(Of course I can't have one blog post without a picture :P)

Santa had brought Alex a really cool pink fuzzy chair for Christmas....it's such a comfortable chair (I want one!)...she loves the way it feels and likes to move her feet back and forth on when she's in it. We took this picture of her Monday morning and I just love it - she looks so 'typical'.

Merry Christmas!!

2011-12-26T19:23:00.000-05:00

What a great holiday we've had!

One of the best gifts was having Aaron's parents John and Joan with us....we have been married 12 years and have never spent a Christmas together....

They were here for six days, and thanks to Zach getting the 24 hour stomach bug things did not go quite as planned, but I think it was still a great visit. My mother in-law and I got to spend the day Christmas Eve making Italian Pizzelle cookies and my best friend Dana spent the evening with us too.

We had a FABULOUS 'Italian Style Fish Feast' with my parents on Christmas Eve and my sister and her husband Shane had an AMAZING feast on Christmas day. Allie Bean has come down with a pretty nasty head cold was NOT feeling so great so unfortunately we had to cut our visit shorter than we would have liked, but it was a great Christmas day. And thanks to Allie Bean's Uncle Danny for letting her spend the whole afternoon on his lap :)

Once again Santa was very good to the kids. Zach has been DYING for an X-Box 360 and Santa delivered. He also got the coolest gift from our Aunt Helen who saw how much he enjoyed seeing the Wicked play last month....an autographed and framed Wicked poster AND an autographed copy of the book...something he will definitely appreciate in the years to come. Alex got tons of great gifts, and I'm happy to say, just like her birthday, pretty much all age appropriate....oh, the simple things in life!! :)

Aaron and I were truly blessed to be surrounded by all of our family and SO much love this Christmas. It was a wonderful, wonderful Christmas.

I hope each and everyone had as magical of a time as we did. Merry Christmas!!!!!

Some Zach Stuff

2011-12-23T10:48:00.000-05:00

Haven't really posted much about Zach with all of Alex's issues so I wanted to post a few quick pictures.

Right before Alex went in the hospital we went to Macy's so he could mail his letter to Santa....I think it's obvious from the look on his face this will probably be the last picture like this that I get! :)

And I mentioned in one of my last posts that he insisted on sleeping with Alex the night before she went in the hospital. I love this picture.

He had his very first school play and thankfully we had gotten home from the hospital that day in time for both me and Aaron to be there, and my parents. They did the play "Really Rosie" and there's an alphabet song in it...he was letter F...

With all of his lung capacity issues right now the doctor has pretty much banned him from sports, which he was pretty bummed about. He had asked a few times to learn how to play the piano so we started piano lessons with him at the end of September. I'm proud of how well he's doing!

Here's a little Christmas Cheer from Zach to you :)

We Finally Have Answers

2011-12-16T19:29:00.000-05:00

Poor little monkey girl...she was SO good considering she was connected every which way and couldn't roll or get out of bed (I think the whole bed incident the night before scared her straight!).

Sleeping was a challenge for her - she LOVES to roll around in her bed to find just her right spot - and she typically sleeps on her stomach with her butt up in the air - clearly she couldn't do that. She would get really frustrated when she wanted to sleep and had to stay in the same spot.

Keeping her entertained proved to be a fun task, but she had her faithful little car that she loves and that kept her happy for a while.

And unfortunately for them, but good for us, our best friends the Woodrums were in the room right next to us with their daughter Jenna.

On Wednesday the doctors took Alex off all of her seizure meds to see if there would be any changes to her brain activity and to try and bring seizures on. At 4:58AM on Thursday morning Alex had a seizure - a bad one....she lets out this funny noise when one is about to happen so I jumped out of my bed and the nurses got to her bed the same time I did....after everything was all said and done I asked them how did they get in her room so fast and they said they were sitting at the desk watching the monitors and saw Alex's monitor just explode with colors and knew she was having a seizure (I now forgive them for the bed incident!). Kind of strange to say but I am so happy and relieved that they saw what I have been seeing and dealing with for months. There words were...."boy, that was a doozey"...Everything with Alex is never black and white....we think she may have Angelman Syndrome.....we think she may have reflux....we think she may have a seizure disorder, we think.....

I don't want people to think...this is my world... I want you to KNOW. The doctor came in on Thursday morning and said that Alex's brain waves showed "MARKED" changes while she was not on her medicine. Her brain waves surged and spiked and it was clear that she has a seizure disorder. They have OFFICIALLY diagnosed her with Generalized Tonic Clonic seizures (aka Grand Mals). Of course I do not want her to have any type of seizures, but to FINALLY say that we have some sort of diagnosis, a real and tangible diagnosis is very comforting in a strange and crazy way. I have hated that she has been on the seizure medicine because of the effects it can have on her liver, but to have the study show how her brain was functioning with the medicine, AND without it brings me so much peace of mind.

So we have our answer. We've changed the doses and schedules of her medication and we have an emergency medication on hand in case we need it...again, more comfort. Nothing left to do or say except unhook my girl and let's go home!!

How many people does it take to 28 leads off of one small child's head?!?

Alex doesn't care, she is just happy to FREE and out of that BED!!!

And Mommy (a very tired, un-showered Mommy) has the room all packed and THRILLED to be heading home!!

And Alex and Daddy are having a few kissing moments! Clearly everyone is happy to be going home!

But, ummm, one small glitch.....apparently the wrap on her head to protect the leads was just a little to tight, and they left perfect indents on her head...

And her poor skin just did not tolerate the leads very well. She had EKG monitors for heart on as well and her chest is one big ugly rash.

But let's deal with that later,...let's get this car moving!!!

We got her home and put her straight in the shower...I'm pretty sure we will be removing glue and goop from her hair for the next six months :)

She was so happy to be in her own house and in her own bed! Once she was showered though it was even more evident of how much her poor head must have been killing her...again the joys of her being non-verbal :(

Oh...one more thing...when we went to Christmas Town two weeks ago, Alex LOVED the snowflakes hanging from all of the trees...she was constantly looking up at them mesmerized. So while we were at the hospital her Papa and MeMe came over (thank you MeMe for all of the laundry and ironing you did!!) and Papa hung all of these snowflakes above her bed!!!!!

I will say the first thing she did when she got in her bed was to make sure her Justin Beiber poster was still there, but once she saw the snowflakes, she was equally excited!!!

I am so happy to have my girl home safe and sound. And I am so, so, so very thankful for all the people who support us and are here for us exactly when we need them.

EMU

2011-12-14T12:08:00.000-05:00

Since September Alex's neurologist has been saying he's going to get Alex into the Epilepsy Monitoring Unit at MCV to see what's actually going on with the episodes that she's been having. I honestly believe she has some kind of apnea because the seizures only happen when she's falling asleep or lately when she's in a deep sleep. Without going into too much detail, we FINALLY were scheduled and we got here yesterday morning.

She was checking out the view from her room...top floor of the hospital so I keep teasing her about her penthouse suite:

Hooking her up to everything has GOT to be the worst part. She has to stay very still with her head in the direction they're working on AND you have to keep her hands held down so she doesn't start pulling all of the leads off - it is not an easy task. My back was not happy after an hour and a half of this position:

She was not a fan of it either, but all things considering she was so good.

I think she forgave me once she was done and her head was wrapped up.

Clearly she was much happier to be with Tabitha.

Zach and Aaron came for dinner and Alex was so happy to see them - and Zach wanted to be in bed with her (the night before we came in he insisted on sleeping with her).

He's always very loving to her, but he's been even more so the last couple of days. His kiss goodnight...

We barely got any sleep - one of the top 5 things I hate most about hospitals. At one point we both fell asleep and I woke up to her making a bunch of noises. It was dark in the room but when I got out of my bed I couldn't see her...then I saw why...despite lots of padding on the bed, she managed to squeeze herself out of the bed in between the two bed rails. The only part of her that was still on the bed was her head. I had to buzz for the nurse because she was so wedged I couldn't release the bed rail or lift her back on the bed. The room is equipped with two huge cameras that follow your every move. The nurses station is supposed to be manned at all times but they clearly didn't see her so I have no clue how long she had been like that. There went any sleep I might have thought about getting! I'm just very thankful she didn't completely fall out onto the floor.

Of course, she didn't have any episodes last night. Today they are going to stop her seizure medicines to see what her scans look like without the medicine and to see if they can catch one of her episodes. The bad part about that is that they have to hook her up to an IV in case she needs emergency meds. She is NOT a good stick and she often pulls her IV's out so I am really not looking forward to that.

Santa!

2011-12-12T13:27:00.000-05:00

I have to share our Santa experience yesterday. Aaron had to work all day yesterday and Alex was going stir crazy (lots going on with her and I promise to post about that soon) so I loaded the kids up and we headed to the mall. Zach wanted to see Santa and since I'm guessing this will be one of the last years he wants to, I was all for it. So we get to where Santa is and there's a bunch of people in line but I can't tell how you actually GET in line...(insert joke here...), so I walked all around the Santa area only to come to the line to find they've blocked it off because Santa was done for the day. Bummer. We started to walk away and Santa's elf came running up behind us and said that Santa wanted to meet Alex! They took us straight to him and Santa (who was not very young I might add!) got off his chair and bent down on his knees to talk to Alex. It was probably one of the most touching things I've seen in quite a while. Alex just kept staring at him with her mouth WIDE open (kind of how she looks at Papa) like "what in the world....!" And then...she grabbed a hold of his beard and pulled with all of her might!! Yikes - SORRY SANTA!!! He spent a few minutes talking with her and Zach and he was so incredibly kind. When we were done, they handed us this picture and said Santa wanted her to have it - free of charge.

Zach and I often talk about "heart happy" moments and this was definitely one of them. When we were walking away Zach said, "Mommy, I'm starting to think that was actually the REAL Santa Clause". I just smiled because I couldn't have agreed more.

Christmas Town!

2011-12-09T13:18:00.000-05:00

On Saturday we had a family trip to Busch Gardens for Christmas Town. I had never been before and I wasn't sure what to expect, but I will say I was highly impressed. The way they decorate the park is absolutely beautiful.

Zach and Micah

My sister, me and my mom

My sister and my nieces Emily and Abby

Shane, Dana and the girls

Tabitha and Micah

Aaron and Zach being silly

Ok, I know this is not a good picture of Alex - but I am allllllllways saying how her Papa is her favorite man....

I mean seriously?!? I'm sure her neck hurt by the time we got home....she just can't take her eyes off him!

I was trying to get a picture of her with some of the lights...she looks scary though :)

Aaron and Me

Alex and Tabitha

Me and my cold girl!

There was one part of the night where I got a little upset. Some of the rides were open so we went and got Alex a bracelet that would let her go to the front of the line. They asked if she could grasp things (yes, she can) and they asked if she "just" couldn't walk or if she had neurological issues as well and then they printed out a piece of paper and we went on our merry way. Last year we took Alex to a Fair and she went on a ride called the Sizzler that she LOVED...this is the link to that post...anyway - they had a ride very similar to that one that was open - we were waiting for everyone to get off a different ride so I told Alex that as soon as everyone was done we would take her on that ride...and I was so excited for her. We got to the gate and they asked for that piece of paper I got and it wasn't until then that I realized they had printed what rides they THOUGHT she could go on. And of course, that ride wasn't one of them....so we took her over to the little kid rides and they wouldn't let her on any of those either - I should add here that they WOULD have let her ride the ride that brings you straight up and then drops you 300 feet. Yeah, good choice. I know the people were just doing their jobs but it bugged me so bad. I'm her mother, I know what her capabilities are and THEY were deciding what she could and couldn't go on and it made me mad...and sad. So I pouted for a while, but Alex was having such a good time watching all of the lights and everything else going on that I got over it. She was happy and that's all that mattered.

We got home close to 10PM and her bedtime is typically 7PM so I'm not sure if she was over tired or over stimulated from the entire day or what but she had a seizure around 10:30 and then again at 4AM (a post about that coming soon)....crappy way to end a really great family day.

Happy Thanksgiving

2011-12-02T18:19:00.001-05:00

Ok so I'm a little late...but I hope everyone had a wonderful Thanksgiving! We hosted this year, and unfortunately I was not feeling good at all (I have since shared the love with my sister and my dad - sorry guys!) but it was a nice family day nonetheless.

My dad and brother-in-law cutting one of the two turkeys we had

My mom and my mother-in-law Beverly who was in town for the week

My brother, niece, dad and Zach

Thanksgiving day also happened to be my dad's birthday so we celebrated him as well.

Ok, so he had a birthday pie...but he's not a sweets person and this is his favorite pie!

Happy Birthday Dad!!

Sorry to the rest of the family that I did not get pictures of...I'll blame it on the sickness :)

Saturday we had a party to celebrate Alex's birthday.

I was going to have a Justin Beiber party for her, but we opted for Pinkalicious!

The birthday girl with her favorite man...

Mom and Bev toasting the birthday girl :)

My sister and my niece Abby

Cake time!!!

Bean and Tabitha

Loving her attention from Jennifer!

And her Auntie Dearest!

Then it was present time...this picture makes me laugh, don't know why.

Thank you Aunt Dana for my Justin Beiber poster!!!

Best pedicure set ever from our friends Scott and Leslie!

It was all way too much....she was so exhausted by the time we were doing presents all she wanted to do was go to bed...being 10 is exhausting :)

We have amazing family and friends and we are so thankful for everyone. We are so lucky to have Alex, because without her we would not have half of the amazing people we have in our lives!

Me and Miss Jennifer

Christy and Harlie

Some of the boys!

My B.F.F!

Dana and Mesa

Our best friends the Woodrums!

One of the best parts of her birthday??? For the first time, EVER, she got all age appropriate gifts!!!! Great day with great people!

Happy Birthday Alex!

2011-11-23T21:36:00.000-05:00

Ten years ago today at 11:16PM Alexandra Elizabeth Hayes entered the world. And what a ten years it has been!! Despite starting her day at 3AM with a seizure, I'm pretty sure she had a good birthday. Me, Aaron and my dad went to her school this morning to celebrate with cupcakes. She was so excited when Papa walked in...

Yes, take one guess who she's looking at :)

Despite this picture, she really was excited to see her Daddy too!

And ehh...so I was there too

Did someone just mention chocolate cupcakes?!?

Ahh, birthday's are good!

A good-bye chocolate kiss for Daddy who had to head back to work

But all is still good cuz Papa was still there!

She took a much needed long nap when she got home and then spent the afternoon being spoiled by Tabitha.

We ordered in pizza for dinner and Alex was happy to help Tabitha blend up her dinner...

And then it was time for cake...more chocolate...

And some more birthday love

She loved all the attention from Zach, Jonah and Micah

Birthday love and presents from Aunt Dana...

And then her present from Micah...

A Justin Beiber book that she promptly kissed each picture we turned to....she was hysterical!

Aaron and I even got a present for her birthday from my parents...who doesn't love presents?!!

We're very, very blessed.

I really think Alex enjoyed her day. We are very much looking forward to celebrating again on Saturday with our family and friends.

I put together a few pictures from the last year for her. I've said it multiple times today, but I just can't believe she's ten. Time sure does fly.

Happy 10th Birthday Allie Bean!!!

Way to Go Zach!!!

2011-11-22T08:57:00.000-05:00

A few posts back I posted about the project Zach did for school on Diversity and the photos he took of Alex. He came in second place!! Way to go Zach, we are all so so proud of you!!

On Sunday there was an awards celebration and he was so excited. My parents came and he thought it was so great the day was about him. My parents even bought him a card and a present :)

Does he look happy or what?!?

Anxiously waiting for his name to be called!

Receiving his certificate and award!

Of course all Alex cared about was that her beloved Papa was there :)

One Proud Daddy :)

This was the closest we came to getting a family picture

And of course, heaven forbid she take her eyes off her Papa for a picture!

Awesome job Zach - Alex is very lucky to have such a great brother that loves her the way you do.

Funny How Things Have A Way Of Turning Around

2011-11-11T21:33:00.002-05:00

Saturday morning at 4:30AM I woke up to Alex having a seizure. Her neurologist really wants me to try and capture one on video so I've been sleeping with my phone next to me so I'm 'prepared'. By the time I got to her room, tried to put the code in to unlock my phone and actually get to the camera, she was kicking the sides of her bed so hard I just threw my phone down and tried to hold her. She cried for a long time after that one. I calmed her down and held her and eventually we both fell back to sleep...until 6AM when she had another one - a much shorter one, but one still the same...and she never went back to sleep. By the time we got the day started, I was not in a good mood. I was sad. I had tickets to take Zach to a play that night but I just could not pull myself out of my funk to go. And that made me feel worse. He still got to go, but when he left I had a real good pity party for myself and just cried and cried. I hate that they can't figure out what's going on, I hate that we're still having issues getting her into MCV for the monitoring, I hate seeing her like that, I hate everything about it. And it's November. Her birthday is in two weeks. I always get sad around her birthday. I obviously love her more than anything and I will DO anything to make her life better, but her birthday is a time to reflect on her life. It's a time for me as her mom to reflect on her birth and the time I was pregnant with her. And it's a grieving process I go through every year. I watched the video of her birth on the day of her fifth birthday and it really made me sad and that's all I think of every year. We had no clue when we brought her home and we were so excited and happy that the road we were going to go down wasn't going to be filled with ABC's and 123's but IEP's and labels. It wasn't going to be ruled by dancing school lessons or gymnastics but by therapy and specialist appointments every week. We were talking to her on the video when she was getting her first bath when she was screaming and we made comments like "when you're a teenager we're not going to be able to get you out of the shower", never imagining that she'll likely never shower by herself. This year it's a big birthday - double digits - she's going to be TEN. We should be surprising her with Justin Beiber tickets or something as equally cool - not buying the latest Elmo.

On Tuesday she had physical therapy and she was having her annual evaluation. I haven't taken her to a physical therapy session in a while because the time she has therapy and the time I need to get Zach from school conflict so Tabitha's been taking her. This Tuesday happened to be election day and there was no school so I arranged to meet Tabitha at therapy and while I stayed with Alex she would that take Zach and her son out for a fun lunch date.

20 minutes into her evaluation Shannon put her in her walker and she started getting her prepared to walk out of the therapy room and down the hallway. Not only did Alex walk out of the room but she went down the hallway, out the front door, UP HILL, around a loop, back DOWN the hill, back into the building and back into the room she started in. We looked at clock when we got back and Alex had been walking in her walker for a full 40-45 minutes. And I mean walking...no two step shuffle, no tap dancing her feet, no dragging her feet, no hanging on the walker and having to have her legs facilitated to walk - she took ACTUAL STEPS....THE ENTIRE TIME!!

I was so excited the next day we put her in her walker as soon as she got off the bus - and she walked just as good...she was much more hunched over - but I figure it's like barely walking for years and then in one day running a marathon - she was S-O-R-E...but you know what? She DID it!

I went from being totally sad, to totally elated in 4 days. I wasn't supposed to be at her therapy session, it just happened to be a school holiday that she decided to show me what she was made of and remind me that, yes, life definitely did not turn out as we expected but she has taught me to truly appreciate the little things we mostly take for granted. She reminded me just how much joy she truly brings me in doing "the little things"....It made me think....God's funny like that.

Fall Picture

2011-11-04T13:55:00.000-04:00

I got Alex's Fall school picture yesterday. If I go back and look at previous posts from school pictures before I probably say the same thing every time, but I can't believe how big she looks. She's definitely turning into a little lady...a beautiful little lady.

Happy Halloween!

2011-11-02T10:36:00.000-04:00

I started feeling human again on Sunday and wanted to do something fun with the kids. We decided to go look for pumpkins so we could carve some for Halloween. Let's just say pumpkins the day before Halloween were NOT easy to find! After multiple stops, we finally got two pumpkins.

Alex had a field trip at school a few weeks before and they went and got pumpkins and when they got back to the classroom they carved a pumpkin and let the kids feel all the 'ooey gooey' stuff inside the pumpkin. So when I sat her at the table with the pumpkin in front of her she got ALL excited and kept grabbing the pumpkin towards her like "let me at all the stuff"...it was pretty cute if I do say so myself :)

She was very patient waiting for Aaron to cut it :)

And WAS SUPER excited to finally get in there :)

Zach wanted no help!

Definitely a fun family project.

The end result!

We had a few of our friends over to Trick-Or-Treat with...

Our friend's Mesa and George's daughters...

The cute Pirate and Wednesday from the Adam's Family!

My friend Dana and her son Jonah...the funniest gym coach...ever...

Tabatha and her son Micah...with Zach...the two Ninjas...

And of course, my sweet "Groovy Girl"!

A little Halloween Love between Tabitha and Alex...

Alex's first house...Trick-Or-Treat!

And about 15 minutes after we left the house, it started raining...bummer!

Tabitha took Alex home to get her ready for bed but the boys didn't care it was raining and kept on going.

They were so funny when they got back...dumped out all of their loot and then began the "I'll trade you one...for....

I think everyone had a fun time!

What A Week

2011-10-29T21:15:00.000-04:00

On Monday Alex had another seizure when she was at school. She was sound asleep for about 25 minutes when it happened. It's driving me crazy that she is only having her seizures when she is either sleeping or laying down. I took her to the ENT to see if there's a possibility that she has a form of sleep apnea. The doctor said her tonsils looked fine, but it wouldn't be the first time that anatomically someone looked ok but had sleep apnea. He said Alex could possibly have 'central apnea' vs. obstructive apnea - meaning it's not her tonsils, but her brain. He scheduled her for a sleep study, but when she had the seizure on Monday I called her neurologist and we decided to get the ball rolling to have her admitted into the EMU (Epilepsy Monitoring Unit) at MCV hospital so we are putting the sleep study on hold.

Zachary went back to the Asthma Specialist and his lung function barely improved - he went from 50% lung capacity to only 57% even though he's been on a special steroid for a month. The doctor put him on a new inhaler twice a day for the next month and we will go for yet another lung function test in a month. If he hasn't improved then, he may look at repeating the allergy testing he had three years ago to see if his allergens have gotten worse, and if that's case, perhaps looking at putting him on allergy shots.

Somehow, I managed to pull my hip flexor muscle which wound up working its way to my back and I've been laid up for the last three days. The pain has been pretty intense and I'm NOT used to being 'down'. I'm not a person who typically takes anything for even a headache. The doctor prescribed vicoden - which did absolutely nothing. I called back two days later and the doctor called in a muscle relaxer. Aaron picked up my prescription at 3:30 ~ I took it at 4:00 ~ by 4:30 I was out like a light and didn't wake up until 7:15 the next morning! I'm finally starting to get back to normal. Once again I have to say how wonderful our family and Tabitha is. I could barely walk on Friday and Tabitha wouldn't leave my side. She worked 3 and a half hours overtime, took Zach to play with her son to get him out of the house and delayed the plans she had. Aaron was awesome taking care of the kids and doing everything that needed to be done. My parents came over today to take care of the kids and brought homemade chili, stew and my dad's infamous meat sauce (oh, and rolls and brownie bites!) They're awesome and we're so lucky to have them here for us.

Here's hoping for a better week!

Diversity Means...

2011-10-20T10:34:00.000-04:00

Every year Zach's school participates in the Reflections Program, which is a voluntary project based on a different theme every year. The children create a personal interpretation of the theme using a variety of choices (art, music, dance, poems, etc.). This year's theme was Diversity Means...and Zach wanted to participate. I asked him what Diversity meant, and he said "different" - so I asked him what he wanted his project to be and he said he wanted to take pictures to show "how different Sissy is". I'm so proud of him. He followed Alex around for weeks with a camera (he was so funny, he'd tell her - "work it girl")...in the end, he created this:

Along with the pictures he had to include an "artistic statement" and he wrote:

"Diversity means different". My sister can't walk or talk, she has a special tube in her belly to help her eat. My sister is very special. She is diverse. I love her a lot."

The concept and delivery was all his and I know I already said it, but I'm so proud of him and how he looks at his sister.

A WICKED October!

2011-10-12T23:28:00.002-04:00

I have a white board in our kitchen that I keep track of the kids appointments on. I took a picture to post, but it had way to much identifying information that I figured it was best not to post it! But...out of the whole month of October, a whole THIRTY ONE days, there are TWO days on the calendar that we don't have something scheduled (and one of those days has already passed!). To say it's a busy month would be a complete understatement!!

Probably the best part of the month so far was the Wicked Performance Zach and I went to see last night. It was HANDS DOWN THE BEST musical I have ever seen....BY FAR!!! It was such a special time for me and Zach to share, alone. I took this picture outside of the theatre, but he was SO not happy with me because there were so many people around...apparently he's at the age where his mother can actually embarrass him...SIGH!

Notice the less than thrilled, forced smile :)

I paid WAY more for the tickets than I would have liked, but when the ushers got us to our seats, it was worth every penny....we had SECOND row seats, on the AISLE....Zach had a completely unobstructed view of the whole performance.

View of the stage from our seats....plus a complete view of the orchestra, which Zach was completely impressed by!

Some parts of the play were completely over his head but he absolutely loved it. When the final scene before intermission ended, he looked at me and said "please don't tell me it's over!" I love that he enjoyed it as much as I did. I was worried that it was going to be way too late of an evening for him considering he had school in the morning and the show wasn't over until close to 11PM, but he talked and talked about the show the entire way home.

Today Alex had her appointment at the orthopedist for her feet, x-rays of her hips and spine (on the plus side, her scoliosis is only showing a 10 degree curve - which is a 5% improvement since she's been wearing her DMO...which is another appointment that needs to be scheduled because she's grown so much over the summer the DMO doesn't fit properly anymore). I tried to get a good picture of the bones in her feet while we were waiting, but I didn't quite capture it as pronounced as it is on both of her feet:

(Hopefully you notice the fancy purple nail polish on her toes and not the big red bone sticking out on the side or how misaligned all of her toes are!)

Basically Alex has VERY bony feet, and unfortunately because of her low muscle tone, she already has bunions on the side of her big toes. She is scheduled to start intensive physical therapy in November, which means she will go for INTENSIVE physical therapy five days a week, three hours a day for two weeks. Because that is already scheduled, we are going to try and blow out her braces so that the bones in her feet are not as irritated as they are now, but we will be scheduling a surgery on her feet sometime in the near future. Not only does she have the bone issues, but she is SEVERELY flat footed, has a ZERO arch in her foot, and she also rolls her feet to the inside if she's not braced. (I'll have to try and get a picture of what her feet look like if she's not in her supported AFO braces to show you how bad her feet look standing 'normally'.) I asked the Dr. what that would mean for her and he said that both of her feet would be casted after the surgery for six weeks. Alex is super hypersensitive to anyone or anything touching her feet so I can't imagine right now how that will play out.

On the plus side, for her....she LOVES the sound of paper crinkling or plastic bags rustling. So while we were waiting for the Dr. she was getting a little annoyed and antsy - I figured most people sit on the waiting table and the paper has to be removed and thrown away anyway (and that you're probably getting BILLED for that paper too!) - so I took the paper from the table and wound it up like a piece of cotton candy. Viola...instant entertainment! She was laughing and smiling so much when the Dr. came in that he commented it was the most innovative way he has seen the waiting table paper used! Ahh, what is it they say about necessity being the mother of all inventions?!?

"What, this is NOT cotton candy?!?"

"Oh well, it will do I suppose!"

I was very proud of Alex today. Our appointment was at 2:00 ~ we got there at 1:45 and weren't called back to see the doctor until 3:20...she handled it much better than I did!!! As soon as her appointment was done I had to race home, drop her off and load Zach in the car within 5 minutes to get him to his piano lessons on time. By the time we left there, stopped to get dinner and work on his homework we got home just in time for him to get ready for bed. I finally sat down after leaving the house at 7:45 this morning at 8:30PM. What a LONG day!!

We have quite a few more appointments scheduled this month...stay tuned!

Catch-Up and Camping

2011-10-10T11:48:00.000-04:00

The dentist appointment, while we were there, was somewhat uneventful. Alex had a really hard time with her cleaning because she's an aspiration risk so they literally just use the pick to scrape her teeth. She cried - which is not something she usually does, so she wasn't a happy camper. Zach had to go back this past Monday and have sealants put on his back teeth, but other than that he was good.

When we left the dentist appointment we stopped at the train station to meet up with my parents who were waiting for my Uncle who was coming in for a visit. Warning - this is where it becomes a total vent! Since we have the wheel chair van now I have to park the car with the ramp side facing the double white lines next to handicap spot. The white lines indicate more room is needed for that spot. My car also has not one, but two stickers on the ramp side window that says it's a lift van and additional room is needed. You probably see where I'm going with this, but as we walk back to the car I see a woman PARKED in the white lines...IT'S NOT EVEN A PARKING SPOT! Or the size of a parking spot for heaven's sake! As we're walking and I see her in the spot my cell phone rings. It's the dentist office. Apparently when we left someone was cleaning up the room Zach was in, wasn't wearing gloves, and stuck herself with the pick that they used to clean his teeth....and now this is considered an "exposure" and could I please bring Zach in for them to DRAW BLOOD because of someone else's irresponsibility. Oh man I was HOT. I typically do not loose my cool very often but after the week we had I was already feeling close to the edge and both of those instances at the same time made me just loose it!!! I yelled at the woman parked ILLEGALLY and I was NOT nice to the person from the dentist office! The woman in the parking lot seemed like she could care less - and the longer I had to wait for her to finish whatever she was doing and WAIT to load Alex into the car the madder I got at both circumstances. You may recall one of my biggest pet peeves is people leaving shopping carts in the handicap spots so imagine how I felt about this!! Ok, done ranting.

Sunday was mine and Aaron's 12 year wedding anniversary so we were heading out of town that night - and it couldn't have been a better time to get away and decompress! 12 years....wow, time does fly.

Monday I had to take him back to the dentist to have his sealants put on and so they arranged for his blood work to be done at the same time. I was still quite annoyed, but I have to say they couldn't have been any nicer and were so apologetic. They even had a present for him when he got there.

Alex came home from school early on Wednesday running a low grade fever. She was really congested and I kept her home Thursday and Friday. Thursday morning at about 3:28AM Aaron and I both woke up from the banging coming from her room from what we're guessing was probably the tale end of a seizure. She still wasn't better by Friday so I brought her in to the doctor so that I could have her looked at before the weekend. She has another really bad sinus infection and is on an anti-biotic twice a day for TWO WEEKS. The doctor and I were also discussing her sleeping issues and the fact that all of her seizures happen when she is laying down and talking through some other issues. She brought up maybe Alex needed to have her adenoids looked at and it sounded like Alex could very well have sleep apnea. When she was in the hospital a few months back for the seizures, the Dr. did say her EEG's showed that there was a possibility that she stopped breathing while she was asleep so now we have an appointment with an ENT specialist a week from Wednesday.

We were supposed to take the kids camping this weekend, but because Alex still wasn't feeling well, Aaron and I just took Zach and Alex stayed home with Tabitha. I'm thinking she had a much better time with her than she would have with us :) They went to the park for hours - she loved the ducks and enjoyed the beautiful weather we had this weekend. Tabitha's amazing.

We had a really good time too. I grew up camping pretty much every weekend and I LOVE it. We only went about 25 minutes away. Aaron is an avid hunter and belongs to a hunt club where he keeps a trailer. The property up there is amazing. Zach definitely takes after Aaron and loves anything that has to do with the outdoors and he wants to do everything "just like Daddy does".

Wearing Daddy's sunglasses

Hanging in a tree stand!

Little too high for me, come here Dad!

Father-son bonding

Not sure what the deal is with the red glove :)

Zach is a marshmellow junkie

Silly little man!

Lots Going On!

2011-09-28T13:56:00.000-04:00

September has just been a crazy month! I keep wanting to sit down each night and blog but there literally are not enough hours in the day!

Starting school and getting back on a routine is challenging enough but we've had a lot of appointments on top of that. Hopefully I will get to blog about each one individually, but here's a real quick recap:

Alex got a new wheelchair - it's AWESOME! Love it - so much easier to maneuver and it looks more like a hybrid between a stroller and a wheel chair - I need to post pictures.
Since my last blog post Alex has had more seizures. One of them actually woke her up out of a dead sleep at about 10PM one night. We took her to see her neurologist and we are going to up her medication one more time twice a day. If she's still having episodes on the higher dose, the Dr. is going to admit her to MCV to their Epilepsy Monitoring Unit for few days to get better data on what's actually going on. (oh, and a blood draw was a seperate trip for her liver level functions for her seizure meds).
Zach went to see the allergy/asthma specialist and he failed his lung capacity test. When he was tested a year and half ago his lung functions were 85% - he's now down to 50%. He is on a special inhaler of steroids at night for ONE MONTH. Hate that he has to have steroids for a whole month. We go back in 30 days to see if he's improved and come up with a long term plan after that.
Alex is having a lot of issues with two bones in both of her feet so we see Ortho in a week to address that.
Tomorrow they both go to the dentist - can't wait to hear what good news comes out of that :)

Throw in homework every night, blending 4 meals a day for Alex, Physical therapy, Speech therapy, piano lessons (another blog post!) and the 4,000 other normal and not so normal every day to day things, it's been hard to blog!

Remembering 9-11

2011-09-11T20:24:00.002-04:00

It was February 26, 1993. I was 21 years old and working at my very first job out of school working in the HR department for Guy Carpenter, a Reinsurance Company, located in 2 World Trade Center. It was about 12:15 and I was sitting at my desk talking to my sister who also worked in downtown Manhattan a few blocks from me and we were making lunch plans. All of a sudden all of the lights went out and my chair had shot back about a foot from where I was initially sitting. I told my sister something strange had just happened and I would have to call her back. Little did I know when I hung up what the next 8 hours, or the next three months for that matter, lay ahead.

Lots of phone calls were made to the security desk and we were initially informed that lightning hit the building. It was snowing out our windows, but given how high up we were, it wasn't uncommon to see snow when it was actually raining down at the street level. Initially we were told to take a long lunch... until we got to the elevators to find they weren't working - we could actually hear the people yelling who were trapped inside the elevators. We all filed to the stair wells only to find that it was jammed with all of the people from the 50+ floors above us trying to get out as well. There was no emergency lighting in the stair wells and you literally could not see your hand in front of your face. To say it was scary would be an understatement.

1993 was not the age of cell phones or social media so by the time I got out of the building, 6 hours later, I still had no clue that I had actually experienced the first attack on the World Trade Centers. My parents were living in Virginia, and they actually knew what happened before I did. They hadn't heard from me, so they had no idea if I was ok or not.

By the time I finally made it back to where I was living on Staten Island it was hours later because tunnels, public transportation and the ferries had all been shut down. It wasn't until I got home and looked in a mirror that I realized the true impact of the day. I was completely covered in black soot. I had been wearing a white sweater that was completely black. For weeks after, every time I washed my hair or blew my nose, there was the black sooty reminder of that day.

I think I was in shock in the first few days. I cried a little when I saw the footage on TV or heard the President talk about it, but for the most part I kept everything bottled in. Our company had to be relocated to temporary office space until the building was reopened. Some people did not return to work for fear of what else was to come. I did go back to work in 2 World Trade for another year and a half, but I don't think I truly dealt with all of my emotions from that day until I had actually moved to Virginia and saw the footage on TV from the 1995 Oklahoma bombing. I remember just staring at the TV and sobbing. I didn't know anyone in Oklahoma, it didn't directly impact me, but I could relate, and that's when it all hit me.

Fast forward to 2001. I am somewhat of a newly wed and ecstatic to be 7 months pregnant with our first baby. Again, I was at work, the company I still work for now, and someone came running back to the back offices where I was and said that planes had hit the World Trade Center. We had no TV's in our office at the time so I was scrambling to find a radio to hear what was going on. I couldn't for the life of me comprehend what I was hearing. The towers had fallen, how could that be? They fell after only hours after the initial impacts. Knowing how long it took me to get out of the building that day back in 1993 I knew the devastation and amount of lives that were lost was going to be huge - but in retrospect I really had no idea. I remember my boss arriving to work and asking me why I was crying so uncontrollably. He sent me home. When I got home and saw over and over again the towers crumbling down all I could think about was thank God it was the beginning of September and there were no class trips to the Observation Deck - trips I had taken numerous times as an elementary school student. I kept thinking somewhere in all of that ruble was the desk I sat in. The shops in the concourse I used to shop in. The newspaper stand I used to buy my magazines. The Ben and Jerry's I used to get my afternoon treat from. The subway station I used to catch my train. They showed papers flying all around and all I could think was somewhere in all of that was my personnel file. There were people that I knew that were still inside that building.

Today I went to church and before the preacher started his sermon the lights dimmed and a screen with with words September 11, 2001 appeared. I didn't even have to see the horrible images that followed before I started crying. It's been 10 years now and one would think that maybe seeing those images, or hearing the stories from the people who had lost their whole lives that day when a loved one didn't make it home, or stories of the survivors or hero's would get easier. For me though, each passing year seems to get just a little bit harder. Maybe it's because I was born and raised in New York, maybe it's because of all my memories, maybe it's because I'm a mom now and I know that my children will never know the world I knew before it became such a scary place. Maybe it's because I'm older and I've come to the realization that I'm not as immortal as I used to think I was. Either way - September 11 - I will not forget....I will always remember.

Family Photos

2011-09-08T10:57:00.000-04:00

A couple of months ago we had some family photos done with Paige Stevens Photograpy. The last time we had pictures done was a little over 2 years ago and it amazes me just how much the kids have changed and grown.

Here are some of my favorites:

First Day Of School!

2011-09-07T20:44:00.000-04:00

Yesterday was the first day back to school and well, let's just say someone was REALLY happy about that!

Unfortunately for my pictures, it was absolutely pouring, lightening and thundering when her bus came. I can guarantee you though, I am almost positive my entire neighborhood was woken up by the sounds of her happy screams. She was so excited to see her bus and I an so happy that we have the same awesome bus driver and aide that she had last year. She and Tabitha had a great first day and I know she's thrilled to be back with all of her friends and back in a routine.

Zach was super excited to get to school as well. My big second grader!

He picked this outfit out all by himself when we went school shopping. He looks so grown up.

Because we were on vacation we missed Open House - which is when the kids get to meet their teacher, find their desk, put all of their supplies in the appropriate places, etc. so he got a little anxious and nervous once we got to his classroom. All of the kids were sitting down working on an assignment and waiting for the bell to ring and we were trying to get his desk organized, but by the time I left he was fine. When I got him off the bus I asked how his day went and he said "GREAT" - "Second grade is so easy!" Ha ha - just wait my love :)

Today Alex had therapy at 5PM so rather than dragging Zach and Ronica with me in the rain, I asked Ronica if she minded staying with Zach and working on his homework. I was SO impressed when I got home and he showed me his homework...for a boy, I think his penmanship is pretty great!

My day starts at 5:30AM now with the new routine with me having to get ready for work and the kids having to be out of the house at the same so I'm not a fan of that, but I am looking forward to this school year and all of the exciting things that await them!

OBX - Summer 2011

2011-09-05T20:43:00.000-04:00

Despite missing two days of our vacation because of Hurricane Irene, we still made it to the Outer Banks and had a great week.

Alex had her BFF Miss Jennifer...

Zach had his buddy Jeff...

And we had our friends Leslie and Scott...

There was a lot of fun pool time...

Even the dog got to swim :)

The boys went crabbing and fishing...

Alex LOVED - I mean LOVED the hot tub! I' think Santa needs to bring her one for Christmas!

We had fun at the beach...

So much fun a nap was in order :)

We relaxed...

And we smiled a whole lot and enjoyed each other's company!

We wished we had the two days that we missed because of the storm, but we crammed a lot in and it was a great way to spend the last week of summer vacation. We ate AMAZING dinners every night, played corn hole, enjoyed the kids and each other. Once again, it was SO nice to have Jennifer with us. She left her brand new hubby at home to be with us and Aaron and I truly had the opportunity to relax (I actually read a WHOLE book - 522 PAGES!!) and Jennifer was always doing something with Alex - swimming in the pool, going on walks, playing in the hot tub - she even gave Alex a pedicure with fancy purple nail polish! :) I love how Jennifer has remained a part of our family - I don't think that will ever change and I love the love she has for our girl. We're already planning next year's trip!

Well, lots to do for the FIRST day back to school tomorrow. The kids are definitely excited. Zach's got his clothes all laid out and every time I mention the bus coming for Alex tomorrow she squeals and gets super excited!

August???

2011-08-24T20:44:00.002-04:00

Ummm...how did it get to be the end of August?!? Wow. One blog post all month...crazy :)

Things are good. Alex has been doing well. No seizures since her sinus infection. She is growing like a weed. I was looking at recent pictures I took of her and I can't believe what a big girl she is becoming. I know she's excited to start school and get back on a routine - but I have to say she has had a GREAT summer. She's been all about town and quite busy.

A few weeks ago I didn't make it to her therapy session and her nurse, Tabitha, sent me this video. All I could think about while I was watching it is that she truly, truly inspires me. When I think things are tough, or a challenge too hard, I'm just going to come back and watch this. She works SO HARD. She is such a trooper. This is one of the first times she has walked without a trunk support. She works so hard every day for the littlest things and she really makes me stop and reflect and not take things for granted.

EVERY day Alex watches the SAME Elmo video. Without exaggeration, she probably watches it 4-5 times a day. It's not that she doesn't have 100 videos to choose from, but this is the ONLY one she responds to. Today Tabitha put in a "new" video and there was an elephant in it and Alex thought it was hysterical...Tabitha said she repeated it over and over again and Alex had the same response. So funny!

Quick Zach story....he had his seven year old "well" check up on Monday. With all of the issues Alex has had with vaccinations I've either denied or held off on some vaccinations. His school called before the end of the year and said that he would need his MMR booster before he could come back in the Fall. So Monday we went and I told him it was for a physical and yes, he had to have a shot. The doctor, who we LOVE, is so great with my kids and knows us very well, obviously, and spends extra time with us. After he did the normal checks he asked Zach to lay down and went to look at his "private" area....Zach was having no part of it, covered himself and said NO!....the Dr. didn't skip a beat and said it's OK Zach, Mommy's, Daddy's and Doctors can look....and Zach said NO! So he calmly said, Zach, I just need to make sure everything looks OK and is where it should be....Zach didn't skip a beat either and said, "Trust me, it is and it's just fine!" So I held his hands down and in 2 seconds that part of the exam was over. When the visit was done, the Dr. said, so Zach, do you have any questions? And Zach calmly said, "Yes, can you not look in my pants anymore?!?"....to which the Dr. replied - I promise I will not look in your pants...for at least another year!" Don't know why - but I got a big chuckle out of that! According to the Dr. Zach is tracking to be 6 foot tall....go Zach :)

Yesterday was a pretty eventful day since we had an EARTHQUAKE! 5.8....wow! Zach and Ronica were up at the park fishing and Tabitha was taking Alex to therapy. The phone lines were so tied up I couldn't get in touch with either of them for quite a while and needless to say I was quite freaked out!

This weekend we are supposed to leave for a MUCH NEEDED vacation but it looks like Hurricane Irene has other plans. Sigh. An earthquake and hurricane in the same week...really?!?

Checking In...

2011-08-08T22:34:00.001-04:00

First....I have to say a HUGE thank you to all of our family and friends for all of the visits, phone calls, texts, e-mail and facebook messages - you have no idea how much your messages mean to us. Old or new, we are constantly blessed by the amount of people who reach out to us when times are not so great. It's so true that when the chips are down, you find out who you can truly count on and if you know it or not, you make our day and we are so, so thankful for you.

Alex has not had a seizure that we know of (questionable one last night) since Thursday. She's still not 100% herself and has had her moments of crying and not being herself, but it's not as bad as it's been the past few days and hopefully she'll continue to feel better in the coming days. We're all really tired and just looking forward to her feeling better. I will say that our pending vacation cannot come soon enough - I think some fun in the sun is just what she needs!

Onto Zach's birthday wrap up. The party was a great success...18 of his friends showed up, he had a lot of fun, and oh my goodness, he made out like a BANDIT!

Aunt Dana and Uncle Shane

Uncle Danny and Aunt Rebecca

Alex in the pool with MeMe and yes, her beloved Papa!

Alex and Ronica!

Daddy and the birthday boy!

Mommy and the birthday boy!

Birthday Love!

The Cake...

One excited boy and his cake!

The loot...I'm embarrassed to say this is not all of his presents, just what his friends brought...

Happy 7th Zach...you are beyond loved little man!

Seizures and Sinuses

2011-08-05T20:28:00.001-04:00

I know I still owe the Happy Birthday Part III post, but it's been a bad week here. I will say the birthday party was great and Zach had an amazing time.

Alex on the other hand, not doing so great. She's had 4 seizures this week and is just miserable. She's been sporting a beautiful tan this summer, but this week she is just as pale as she can be.

Yes, that's how pitiful she's looked the last week.

Alex has what is called a Sleep Safe Bed and it's all enclosed so she can't fall out. It's made out of maple wood and she's had it for the past 4 years...it looks like this:

We always try to pad it as much as we can since it's made of wood and she moves around so much, but when she had one of her seizures this week, she was convulsing right at the end of the wooden part of her bed and stripped the skin from her toes:

Despite the seizures, she has been miserable and not at all herself - she has been biting her arm to the point where she has drawn blood, has been pulling her hair out and just all around unhappy. I suppose it's quite bittersweet, but all she wanted this week was to snuggle with me. Normally she loves to have her own space, but she's been so content to sit with me on the couch for hours at a time. She's been reaching for me and wanting hugs. She's never done that before and while it's hard to see to her like that, at the same time it's so gratifying to me as her mom that she feels bad and wants me to comfort her...a TYPICAL reaction. I took her to the pediatrician yesterday because I just KNEW something was wrong. The Dr. examined her throat and ears, and once she got to her nose she said "oh my goodness"...apparently her nasal passages are so swollen from a sinus infection that they were almost 100% blocked. She said when she was laying down it's probable that she can't breathe and that her head probably feels like it's in a vice (feeling like a crappy Mom as I look at her with a tight fitted pony tail on the top of her head).

Bottom line....the Neurologist upped her medicine for the seizures and her pediatrician has her on meds for the sinus infection, which they feel triggered the seizures. Hopefully she will start to feel better in the next few days because my happy, go lucky girl has gone from all smiles to being completely miserable. It's been 4 days now and I miss my happy girl and just DO NOT like seeing her like this :(

Happy Birthday - Part 2

2011-07-29T13:26:00.001-04:00

Zach's day started with his scavenger hunt for his presents. I wrote out 4 clues and he had to find each of his presents based on his clues.

He read the clues twice and then went on his hunt. He thought it was so much fun and did a good job finding them!

I thought this picture was so funny - apparently I write very thought provoking cards :)

I told him he could only open one present so he had to choose carefully...of course he opted for the biggest box!

After he opened his present he went upstairs to see Alex who was still in bed.

I love the way she looks at him - she stares at him all the time and loves when he's around.

I caved and let him open the rest of his presents before I had to leave for work :)

Probably the sweetest part of the day was when he was opening his card from Alex. She was staring at him, smiling and then she put her arm around his, pulled him towards her and kissed him. It was priceless - and probably the most purposeful thing she has ever done.

Cousins

Can't forget Daddy!

He spent the day at the pool with Ronica and Tabitha and we had arranged to go to dinner with my parents, my best friend Dana and my niece Emily. My parents came early to give Zach his presents and give Zach and Emily some play time.

Right as we were walking out the door Zach got a phone call from Geoffrey - the giraffe at Toy's R Us...

Zach and I have a "date night" dinner once a month and we usually go to to the same Hibachi place - which is where he picked to go for his birthday dinner. Zach calls it the "pee pee guy place" because the chef starts a fire in a volcano made out of onion and to put the fire out he has this little guy that when you push his head his pants come down and he "pee pees" out water to put the fire out. He laughs every time. The chef decided to give Zach a birthday soaking...

We had a great dinner and Zach and Emily had a lot of fun spending time together.

After dinner they brought out fried ice cream for him and everyone sang happy birthday.

Zach and my parents:

...and his "Auntie Dearest":

He had a great day. Tomorrow is his birthday party at the pool, so I'm sure there will be a Happy Birthday - Part 3 post :)

Happy Birthday Zach!

2011-07-28T22:33:00.000-04:00

Seven years ago today....time really does fly.

He had a great day - according to him he wanted to know if birthday's are always fabulous, because for as long as he can remember his birthday's have been fabulous. Nice to get some positive feedback there. :)

His day started with a scavenger hunt and clues to find his presents. Off to the pool for the day and ended it with a family dinner at his and my favorite "date night" restaurant with my parents and my niece, Emily. Pictures of his day to follow.

From day one Zach has been an easy child. He is sweet, caring, generous, smart, funny and full of love. Whenever something good happens he says that his heart is happy. Thank you Zachary for making me so heart happy. You truly bring sunshine to my days and you bring so much joy to our lives each and every day. I love you beyond words buddy.

Swim Team

2011-07-26T11:06:00.000-04:00

Last week wrapped up the season's swim team for Zach. He did so well this summer and we're so proud of him! He shaved over 50 seconds off his time on record from last season (granted, he only swam in on meet, but still!)

This is how he typically is at a swim meet:

And this is how he was at the very last meet:

He had a pretty bad ear and eye infection all that week and he still wasn't feeling all that great. But he swam like a champ and had his best time of 30.11 seconds (His time last year was 1:23:58!).

Pictures from the meet - organized chaos at its finest!

Saturday night was the awards banquet and he was thrilled to get a trophy!

Way to go Zach! Looking forward to next summer!

Zach

2011-07-15T12:41:00.001-04:00

Did you know you could go to Toys R Us and have your kids register for things they want for birthday's or Christmas with a registry gun, you know like you do for a wedding?!? Zach's birthday is coming up and he wanted to go to Toys R Us to see what he might like for his birthday. We had SO MUCH fun going through the store and scanning - I think in total it took us about 3 hours and I was actually shocked that he didn't scan the whole store! When it was all said and done he had 26 items on his list. Great afternoon.

After Toys R Us we headed to the pool. He's had a tooth loose for weeks and he completely freaks about anyone touching it or trying to pull it out - same drill we went through with his front teeth. It gets so loose that it basically starts to lay down - and it makes him even talk funny - it's quite comical, but I get to the point where I just want to hold him down and rip it out!

It's the bottom left one in case you couldn't see it practically falling out of his mouth!

Nope, not pulling on it, just checking it out in a mirror...

Ok...maybe I'll pull on it a little bit....

Well, whadda ya know?!? It came out...!

He looks like a poorly carved pumpkin with some missing, some growing in...but he's happy, I'm happy, life is good :)

Assistive Technology

2011-07-07T13:42:00.003-04:00

This morning we had an Assistive Technology consult appointment at Children's Hospital to evaluate all of the communication devices that are available to try and find a device that will work best for Alex to communicate her needs and wants. We were at the appointment for over three hours and I have to say I was so impressed with how patient she was and how great she tolerated everything.

We tried the eye gaze system again, but once again she didn't hold her gaze at the pictures long enough for the computer to understand what she was looking at...

They tried using it with a switch, but I have to say, I even had a hard time with that. You had to select which row you wanted to be on, wait until the machine knew that's where you wanted to be, then you had to hit the switch to get to the correct picture you wanted to be on, then you had to wait so the machine knew that was the picture you were picking. It was a pretty complicated series of hits and pauses - so that didn't work so well...

We tried the I-Pad and another device called the Dynavox. Overall, Alex was most interested in all of the new people in the room - she kept trying to grab their hands and smile at them...little love bug :)

Alex and Tabitha

The last thing we tried was a touch screen monitor. Overall she had the best success with that. She had to choose between two pictures - it would be a picture of a dog and a car and it would say which one is the dog? She had to touch the dog to move on to the next series of pictures. She looked at the correct picture with her eyes, but wasn't really grasping the touch the monitor concept. Then, because she was so interested in everyone in the room, they put a program on with lots of faces...TEEN BOY faces, and boy did she like that! Her eyes never left the monitor...little flirt!

So the plan for right now is to order her a touch screen monitor to connect to our computer here at home. We really need to work, every day, on teaching her the cause and effect of what the monitor can do. Once we gain ground with that and she understands the basic concept, they really feel a lot more communication doors will open up for her. Her speech therapist is great, and the techniques are great, but utilizing systems for an hour once a week clearly isn't cutting it for Alex. As she's shown us with so many facets of her every day, it has to be repetition, repetition, repetition for her to grasp concepts. We left the appointment with a lot of great apps and software options to start using at home every single day - using her switches for now to activate the programs and eventually we will work towards her using the touch screen. Again, once she grasps the concept, the eye gaze system or other communication devices could really open up the communication door we're so longing for with her.

Once we left the appointment we were all starving, so we drove to Wendy's and for the very first time, EVER, I bought Alex a kids meal!!! The little things around here are really the most exciting! I got her chicken nuggets and french fries and when we got home we blended up the nuggets (with the sweet and sour dipping sauce for her nuggets) and she LOVED it :) She also got to drink some fruit punch...through a REAL straw!!

Normally she uses a specialized straw - but a few times this week she's used a real, conventional straw. Pretty exciting stuff!

Summer Fun!

2011-07-05T10:38:00.001-04:00

I would say the first two weeks of summer break has been fun and eventful for the kids so far! Among other things, they've gone bowling...

Yes, Alex beat everyone!

Had fun at Chuck E Cheese!

Love this picture of Tabitha and Alex!

On Friday they ran a lemonade stand in the driveway...

LOVE Zach's sign...Liman Ad!

But it worked...they made over $5!

The first dollar from their first sale :)

Zach and his 'business partner', Ronica.

They are staying very busy and having a ton of fun...who could ask for more?!?

Summer Break!

2011-06-27T19:09:00.000-04:00

I can't believe it's been weeks since I've blogged...it's been busy! End of school, birthday parties, swim practice, baseball game, movies...lots of fun stuff.

We are so fortunate to have Ronica staying with Zach this summer and Tabitha with Alex. They are both two exceptional ladies who love our kids and we feel so lucky to have them at home with the kids this summer!

Yesterday was probably the worst day - for me and Zach...mmm, ever. I was home alone with the kids and Zach went out in the garage to play on his pogo stick while I was about to start dinner. About 3 minutes after he went outside I heard him screaming and ran into the garage to find him bleeding on the floor with a huge purple knot on his head. He had fallen off the pogo stick and landed head first on the cement garage floor. We have had a lot of drama with Alex, but I have never, ever, been so scared for him. I couldn't get him to stop crying and about 10 minutes after he got really sleepy and was getting lethargic so it was obvious he needed to go to the hospital. A HUGE, HUGE thank you to my neighbors Scott and Leslie who came right over and helped me. Scott stayed with Alex until Aaron could get home from work and Leslie came to the hospital with me.

St. Mary's was AWESOME. We walked right in, they were so kind and the Dr. and nurses were great. For the first three hours he slept alot, didn't want to talk and when he did, he just cried. My heart broke for him he was so scared. The only thing that made me laugh was when they came in to talk to him to check his neurological status they were asking him questions and he wouldn't talk....so they asked him what happened and he pointed to me! Umm, Zach, unless you want Mommy to spend a whole lot of time with an Investigator, that was NOT the appropriate time to point to me! What he really was pointing to me for was that he wanted me to speak for him. Ok, maybe not that funny, but it did make me laugh...sometimes you just take what you can get!!

Sleeping in the ER

Finally awake...the flash on my camera kind of takes away a lot of the purple in the bruising.

So after 5 hours in the Er, a scraped up face, fat lip, a concussion and a broken finger, we got to home. He was so tired he passed right out as soon as we got home.

He was pretty excited that he broke his finger and thought it was cool he was getting a "cast"...only he was quite disappointed that it was just on his finger...he wanted it all the way up his arm!

This morning when he got up he was still really nauseous and had a bad headache. He didn't want anything to eat or drink and even a food commercial on TV would make him dry heave. I gave him the Zofran the hospital gave us for the nausea and he stayed in bed until around 4:00 when he started feeling better and really wanted to go to the pool and take his swim team picture with everyone. The Dr. said he can't swim for the next two weeks so he was pretty bummed he was missing his swim meet tonight.

I can't tell you how THANKFUL I am that he is ok. It was a pretty emotional two days for all of us and I'm just so happy to see my little guy acting more like himself. He probably could have asked me for a pony today and would have gotten it!

Mr. and Mrs. Brad Viar!

2011-06-13T11:41:00.002-04:00

Saturday was the BIG day!!! Brad and Jennifer are now Mr. and Mrs.!!! It was a BEAUTIFUL day! (HOT, but beautiful!)

Of course I have a million pictures, and I'll be creating a video, but here are a bunch of pictures from the day. Jennifer was a BEAUTIFUL bride. Every time I looked at her she had the biggest smile on her face and it was so obvious how happy Brad makes her.

The beautiful bride!

Jennifer and her dad...look at that smile!

The vows

Mr. and Mrs.!

Again....her smile!

Alex did a great job (minus one huge melt-down about 10 minutes before the ceremony!)

In the bridal suite waiting to get dressed

All dressed and ready to go!

What do you think Daddy?!?

Hanging with Papa right before the ceremony

And a kiss for good luck!

Time to walk down the aisle with Daddy

She really did a great job during the ceremony watching and taking it all in...a few little squeals here and there just to make sure Jennifer knew she was really excited for her!

Heading back down the aisle

My in-laws drove all the way from Rochester, NY to see Alex in the wedding

Pictures with all of the bridesmaids

Jennifer and my Dad

...and with Mom

...and us!

We changed Alex a little after the ceremony was over so that she would be a little cooler so there a lot of pictures of her not in her dress...

Waiting for the bouquet toss

She was quite the dancing queen...she danced with me, her Papa, the groom...

...and her brother

One of my favorite parts of the night was Alex dancing with her Daddy. She smiled almost the entire time they danced, kissed him and just totally enjoyed herself.

Congratulations again Jennifer and Brad. It was a great day with memories that will last a lifetime. We can't thank you enough for letting our family be such a part of your special day!!

More On The Straw!

2011-06-06T11:43:00.000-04:00

So here's what Alex looks like with the Kinesio tape on!

Here's a quick video of her actually sucking on the straw...

And this video was from the end of the session. She's completely full and has no desire to drink anymore, but she decides she'll take a suck and then raspberry it back out!

All week she's done really great with her meals and practicing her sucking with the straw. She's coming so far with her oral abilities - it's awesome! :)

A Very Busy Week!

2011-05-31T11:30:00.000-04:00

I started to blog last week and, well....

It was a busy week to say the least! Physical Therapy, Speech Therapy, Neurology Appointment, my birthday, Aaron's birthday, swim team practice started, Memorial Day weekend....

So here's how the blog post started last week....Yesterday was another really great physical therapy session for Alex. Shannon put knee immobilizers on her and had her standing, at some points all by herself! You could clearly see in her face that she knew when she was loosing her balance and about to fall - she clutched her hands to her chest and made a face like Uh-Oh! So cognitively, that's a great thing. I took videos of her, but I took them with my phone camera and they are sideways...bummer!

At speech therapy they used kinesio tape on her lips to basically make her more aware of her lips and strengthening...and guess what?!? SHE SUCKED FROM A STRAW!!! Had total lip closure and sucked...very exciting stuff. All weekend she has been grabbing the squeeze bottle we use to feed her pediasure and out of my hands and has been sucking on the straw.

Friday we had follow-up with neurology. Her blood work came back fine and she was actually a little bit below therapeutic level. We were giving her 2.5ml's of Depakote three times a day, but the Dr. switched us to 4ml's, twice a day. Over all she seems to be doing really well on the medicine...knock on wood.

That's all I have time for right now, will hopefully do a better job of keeping up this week!

Walking and Braces

2011-05-18T10:46:00.000-04:00

Yesterday Alex had an awesome day. She had physical therapy right after school and she did AMAZING. She walked on the treadmill with only Shannon holding her up (I say 'only', it was quite a work out for Shannon!) These are, by far, the best steps she's ever taken - and on a treadmill no less!!

Right after therapy we headed to pick up her new braces. These are a lot taller than the ones she's worn in the past, but she really needs the extra support. And of course, they're pink :)

Still No Diagnosis

2011-05-16T13:11:00.000-04:00

Another bummer. A few weeks ago I took Alex down to MCV and had blood drawn. The geneticist said that back in 2002 the methalaytion study on her 15th chromosome showed a variance. She wanted to run further tests because the testing has come so far and this new test would tell us if in fact there was a variance and to what degree - which would have finally given us an actual diagnosis of Angelman Syndrome - not just a clinical one. Tests are back and it was negative. It's really a bitter sweet thing. How do I WANT her test to be positive, but not want anything to be wrong with her?!? I just want a diagnosis so I can close that chapter and stop worrying/wondering if we are doing everything we can to give her the best life possible. They are going to run a UBE3A analysis on her again (another test for Angelman Syndrome), but I'm not getting my hopes up.

I'm trying not to let the events of the past few weeks get to me, but boy is it hard. Things with Alex had really been status quo for the past few years - just the way I like it! Then all of a sudden we are back to testing, seizures, Dr. appointments left and right, yadda yadda yadda. I feel like I'm thrown back to when she was just a few months old and we were all of a sudden on this journey and I am SO not prepared for all of the emotions this trip down memory lane is bringing me.

Day 3

2011-05-12T10:28:00.000-04:00

Today is day 3 of being on the seizure medicine. So far she seems to be tolerating it ok other than a loss of appetite. She's really grumpy today, but how do I know if that just the medicine or something else going on? I can't even begin to say how much I hate this medicine. I seriously get a physical gut wrenching ill stomach every time I give it to her. She's on 2.5 mls of Valproic Acid three times a day. This now means we also get to go and do lovely blood draws every 3-6 months because of the way it processes through her liver. Have I ever mentioned how fun it is to a blood draw with her? She's the hardest stick ever.

I think I'm having such a hard time dealing with this is because I control every single aspect of her life. When she eats, what she eats, when she gets a diaper change, where she goes, what she wears, what time she goes to bed, what toy she will play with, what movie she will watch. She doesn't ask for anything so I just make all the choices for her. Seeing her have a seizure and not being able to control that or do a damn thing about it is so hard. It's scary, it's sad, it's the most helpless, horrible feeling I've ever experienced. Ever. Period. I hate it.

More Episodes

2011-05-09T20:40:00.000-04:00

Unfortunately, Alex had a seizure again at school today and another one tonight. The one tonight was scary. It lasted about 2 minutes, and she was clenching her mouth and biting down so hard that she actually lost a tooth. When I saw the blood I thought she had bit through her tongue.

The neurologist called a little while ago and he is putting her back on seizure medicine. I'm so sad, all I've done is cried.

Happy Mother's Day!

2011-05-08T10:50:00.000-04:00

First and foremost I want to wish my mom, Aaron's mom and step mom a very happy Mother's Day. All three of these ladies are exceptional women who have such a positive influence on our lives. To my mom - you are my rock. You are always there for me, encouraging me and supporting me. When anything happens, you are the first person I call or turn to - you're not just my mom, but my friend. I love you very much mom - thank you for everything.

I heard a song the other day and it made me think of my kids and what a great a message for them from me. If you follow my blog, you know that I LOVE pictures...one of the problems is I'm always taking the pictures so I'm not usually in them! I went through some pictures from the last two years and found some of me and the kids and made this video for them - it's my Mother's Day present to myself!

Quick Update

2011-05-07T11:23:00.000-04:00

Alex's neurologist called Thursday night. I have quite a bit of research to do because I don't understand a lot of the technical terms he used, but the bottom line was while Alex's EEG had some abnormalities in the central region of her brain, she was not having active seizures. The fabulous news is that he does not feel the need to put her on any seizure medication at this time and that is a HUGE weight lifted off my shoulders. I truly believe that Alex has made some great cognitive gains in the last two years and my fear was that she would have to go back on seizure meds, which in turn makes her sleepy and in a fog. It's taken her quite a few days to get back to her old self, but I think she was absolutely exhausted - the hospital is not the place to be if you're looking to get any sleep!

Alex went back to school yesterday and it was great seeing her so excited when the bus came. She LOVES the bus and she enjoys being at school so it was nice seeing her fall back into her routine and being happy about it.

Thank you again to everyone for your calls, texts, e-mails and prayers. Aaron and I definitely felt loved and supported and appreciate the family and friends that we have.

Hospital Update

2011-05-04T01:10:00.000-04:00

It's been a long few days, but I have to say, as tired as I am, Alex truly gives me strength with how strong she is and what a trooper she is. She has been through so much the past week and she still manages to be happy. Don't get me wrong, she gets frustrated and unhappy, but if I was poked and prodded the way she was I doubt I would bounce back the way she does. Anyway...before she was hooked up to the video monitor, she looked like this...

Afterwards, she looked liked this:

Still happy....

Her 24 hour test started around 11AM. The machine that she was hooked up to showed her brain waves with a side video of her. The only problem of being hooked up to the video monitoring was that we had to make sure that she stayed in the little video box so that if something showed a seizure, the video would show what she was actually doing or what her facial expressions looked like...so there was no getting her out of the bed to put her in her wheel chair to play or to eat, which was hard for me. It's kind of hard to see, but the video monitoring looked like this:

Not sure if the picture does it justice, but it's kind of rhythmic, which is a good thing.

Around 10:00 last night she pulled out two of the wires that were connected to her head and the on call technician had to be called in to reconnect her. Alex was sound asleep when she came in, and as hard as she tried to be quiet and gentle, Alex wound up waking up and was WIDE awake for a few hours after. Her neurologist came in at 11PM to check the video to see if he could see any abnormalities on the video from the day, but unfortunately when the tech came in to hook up the wires she had to pause the recording and when she did all of the video from the day downloaded to a computer so he couldn't review anything. Bummer.

I have to say I absolutely LOVED Alex's day nurse, Miranda. She was AWESOME. She had actually worked at my pediatrician's office before she became a nurse, and had suffered from seizures when she was a child so she GOT it and was just so compassionate with Alex. Unfortunately, I was quite annoyed with the night nurse assigned to her. It was so important to have her asleep and get a good reading of her EEG asleep, yet she came in every 2 hours to take Alex's temperature and blood pressure. She had a heart monitor on, she had a pulse ox on her that was monitoring her respiration's and pulse, so what was the point in waking her up and skewing her test? I could see if she was in for a respiratory issue or something, but for heaven's sake she was being VIDEO monitored! Ok, off my rant...

This morning, because of all of the interruptions during the night she was up extra early at 5AM and by 7:30 this morning she had pulled out 8 of the wires...which caused her EEG to look like this...

Not good. So they called another tech back in to reconnect her. Holding her down (after holding her down for three blood draws, having a catheter done, an IV line and a mini EEG in a three day time frame) had not been an easy task, and she was already extremely frustrated from being in her bed for over 22 hours without moving, so we made the call not to rehook her. We had 22 hours of recording so I felt confident that if 22 hours of recording hadn't captured anything, unhooking her, from what I can only imagine where uncomfortable wires, a few hours early probably wasn't going to show any epiphany.

Clearly she was happy to be "free"!

Once all of the wires were removed, with all of the glue and tape they used to "try" and hold the wires in place she looked like Medusa! :)

By the time her pediatrician came in to discharge us I had already cleaned up her room, packed up all of her stuff, unhooked her from the additional wires that were monitoring her, got her dressed and had her in her wheel chair - it was obvious we were ready to go home. And from the look on Alex's face, she was ready too!

A HUGE thank you to my mom and dad for coming up to the hospital each night and staying with Alex so I could run home an shower and have a quick dinner with Aaron and Zach.

I know this has already been a long post, but I have to share one more thing. On the second day that we were in the hospital, I went to the little community kitchen that everyone on the pediatric floor shares to heat up Alex's food and I met, and had a long conversation with, a man named George. We briefly exchanged the obligatory niceties that parents on a pediatric floor do, and then got involved in a more in depth conversation. George was from South Africa and was in the process of obtaining Visa's to the US for the "American Dream". When his family went for their mandated medicals before they could enter the States, the Dr's in South Africa said his son, who was 16 years old, 6"2 and 215 pounds was sick and not cleared to enter the US...he was shocked. To make a long story short, George's son was diagnosed with a very rare form of stomach cancer. He had surgery, and by the time he reached the US the cancer had spread to his liver and lungs and his son was a mere 100 pounds. His son was in the Pediatric Intensive Care Unit, a place that I spent a month with Alex. George shared his story and his faith with me in a tiny kitchen probably no bigger than my bathroom. His son is dying, there is nothing they can do for him, I can't even begin to explain how George and his story touched me. Last night as George changed shifts with his wife and was leaving the hospital he came into Alex's room to meet her, blessed her and quietly left. The only thing I could think of today as I wheeled a very happy Alex out into the cool breeze and sunshine is that I was so lucky. Yes, we certainly have our challenges with Alex, and our life is harder than most, but she was leaving with me. She was enjoying being outside and the sunshine on her face. I was so happy to be taking her home, yet all I could think about was George and how he wouldn't be leaving the hospital with the same joy that was in my heart. He would be leaving without his son. The four long, sleepless nights I just had suddenly paled in comparison.

A Very Busy, Long Week

2011-05-01T22:22:00.001-04:00

I started this post on Friday and never got a chance to finish it...so I had no clue just how long the rest of the week was actually going to be...

It's been a long week for Miss Allie Bean. Monday she had an appointment for new orthodics. The braces she currently has are leaving pretty significant pressure marks on her feet and she was getting really upset every time we put them on. Tuesday was physical therapy right after school. On Wednesday morning she had an appointment with her neurologist. A few weeks ago she had an "episode" at school that was questionable if it was a seizure. For a little background, Alex was first seen by a neurologist when she was just a few months old. She had an abnormal EEG and was put on seizure medication for a "seizure like" disorder. She stayed on that medicine for a few years and after a normal MRI of her brain and several "normal" EEG's, we gradually weaned her off the medication. It's been about 5 or 6 years since she has been on any type of seizure medication. With the episode at school, and some quirky facial grimaces lately I figured it would just be best if we made the appointment with the neurologist. He decided that she should have an additional EEG (which was scheduled for this Thursday) and depending on the results of that, he may schedule her for a 48 hour video EEG, which would not only record the activity in her brain, but also have video to corelate any questionable activity to what she was actually doing at the time. After the appointment I dropped her off at school and right after school I took her to the chiropractor. The chiropractor offers medical massages and I thought with the amount of time she spends in her chair and the physical therapies that she does it might make her feel good. Who doesn't like a good massage, right?!? Thursday morning before school she had to go have blood drawn and after school she had speech therapy. (Did I mention anywhere in there that I actually have a job to go to in between all the appointments?!?) Friday morning she had an 8AM appointment at MCV with genetics (more on that in a different post). As soon as we left that appointment we had to race over to the Special Olympics Little Feet Meet that she has participated in for the last three years.

Tabitha and Ronica where there to cheer her on

Can you feel the love?

She absolutely adores her brother

Mommy cheering her on for winning a ribbon in the tennis ball toss

Saturday afternoon she was watching a movie in her room and I was helping Zach with something in his room when we both heard a loud banging. It took me a second to realize it was coming from her room so we both ran down to her room and saw her having another "episode". Her legs were completely contracted and they were convulsing. Her eyes were fixed up and to the right and she was holding her breath. The look of complete terror on her face was what struck me the most and will probably stick with me for a long time. I've never seen her look like that before. I picked her up and was trying to get her to snap out of it - when she did she was panting like she had just run a marathon. It felt like it was an hour but I'm guessing the whole thing was about a minute. A few minutes later she went to sleep - for two hours. A little while after she woke up, the same thing happened again, lasting about 40 seconds and after this episode was over she cried. I called the pediatrician and we were sent to the Emergency Room, where we were eventually admitted.

Today she had a brief EEG that didn't really give any conclusive results so the Dr. ordered the 24 hour video monitoring. She's scheduled to be set up sometime tomorrow - given what a challenge it was just to get her prepped for the brief one this morning I am not looking forward to tomorrow's events.

Hopefully we will have some answers in the next two days.

Happy Easter!

2011-04-27T13:42:00.000-04:00

I hope everyone had a very Happy Easter!!

There are lots of pictures in this post - but since I don't have time for scrap booking anymore, the blog doubles as one!

Dying Easter Eggs...

Alex was SO into dying the eggs this year - she was so incredibly focused and amused that I'm thinking this should be a new activity for her year round.

The Silly Eggs!

The day before Easter Zach informed me that since we leave cookies and milk for Santa that he wanted to MAKE the Easter Bunny a carrot - not a real one, but something he could keep. So we made a stuffed carrot for the bunny...who in turn left him a nice note about it.

The baskets...

Sissy checking out her basket...

The bunny left lots of eggs laying around...

After all the eggs were found it was off to church and then back to my parents house for a bit. Alex looked so pretty but would NOT cooperate for any pictures.

Love this picture....

Then it was off to my sister's for dinner.

My sister and brother

Cousins!!

Alex was being a real stinker every time she saw the camera she looked down. She totally knew what she was doing too....so we took one without her!

But then I snuck this one of her...

It's been a long time since we've had a picture with our parents!

Nags Head

2011-04-23T08:41:00.000-04:00

Wow, I have a lot of blogging to catch up on!

For now I'll just start with our recent trip to the Outer Banks. Our friends the Morris' invited us to Nags Head for Spring Break and we had a great time!

Scott, Leslie and Jeff

We enjoyed a lot of time on the beach, and even though the water was freezing, it didn't stop my little fish from going in.

We were lucky enough to have Alex's respite worker, Ronica, with us. It is such a blessing to have people who love Alex to sacrifice time from their lives to make ours a little easier. Ronica was up every morning to take care of Alex and entertain her. It was awesome having her with us so we could truly relax. She's wonderful with Alex and we are grateful.

The boys tried out their rock climbing abilities and were quite impressive!

We drove the truck out to Oregon Inlet and enjoyed a day at the beach while the guys tried their hand at fishing.

And while the girls relaxed!

Zach lost interest pretty quickly and decided to just play in the sand.

I think Zach should be the poster child for Cheez-It's considering it was the main staple in his diet.

When we got back from the beach Ronica was nice enough to watch all the kids so that we could go out for a nice seafood dinner.

One of my favorite parts of the trip was Alex getting to put her feet in the water....while it was freezing, she LOVED it!

It was a great trip with good times, good friends and great memories!

Drum Roll Please!!!!

2011-04-08T10:13:00.000-04:00

We FINALLY have our wheel chair van!!! I cannot tell you what a HUGE difference this has made in our life!!!!!!!

It is so much easier to take Alex out now. And as much as I hate to admit it, there were lots of times before where I know she would have loved to have gone with me on errands or other outings, but I left her home because the thought of the struggle of getting her in and out of the car, and her chair in and out of the car was just just too much to deal with. I am so happy to say that has changed 100% and I LOVE taking her out in the van....and she LOVES to ride in the van!!

We are so extremely thankful for this van. We are so incredibly blessed to have it, it truly is life changing and we cannot thank you enough...you know who you are!!