January 22nd?

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!

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!

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!!

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

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

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

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.