Happy New Year!

Hopefully we are starting the new year on the right foot...we got the results of Alex's MRI's and both the spine and the brain were normal. We will follow up with both her orthopedist and her neuro in the following weeks to go over the tests in more detail, but for now we are grateful for the good news.

Aaron and I just got back from the funeral of a two year old, Lawson, who lost his battle with a brain tumor. It's been an exceptionally sad day for both of us, so without sounding too sanctimonious, I'd just like to say as we reflect on the past year and hope for the new, please hug your kids tightly and thank God for them and their health.

I hope everyone has a blessed and Happy New Year.

Christmas

My parents had kept Zach for two nights while Alex had her MRI's and the following night since his cousins Abby and Emily were there too and he did not want to come home! Only problem with staying at MeMe and Pappa's house is that Zach's allergies for cats are off the charts and they have 2 new kitties. By Christmas Eve Zach's coughing and wheezing were getting pretty bad so we headed to my parents house around 2 with the trusty nebulizer. We went to Christmas Eve service at church at 5PM and back to my parents house for an incredibly delicious meal and then the kids all opened their presents. It was a fun night.

Zach at MeMe and Papa's in his Christmas PJ's!

I LOVE this picture of Alex kissing Zach

Allie Bean and her cousin Abby opening one of her presents

Christmas morning we got up about 7:30 and headed downstairs to see what Santa brought. Alex was not herself at all...she was pale and kind of out it...our guess is the anesthesia caught up with her because as you can see from this picture she was puffy and just not "with it". She took two naps and was in bed for the night by 6:15.

My best friend, Dana, flew in from New York on Christmas morning and we had a nice brunch here at our house with my parents. It was really a nice relaxing day. I enjoyed my weekend with Dana and Aaron was so great about us having our girl time. Zach is having a ball with all of his new toys and I'm anxious to break out the Easy Bake Oven Alex got! :)

I hope everyone had a very Merry Christmas!

MRI Update

It's been a long and draining day but the MRI's are complete and Alex did just fine. I stayed up until 12:15AM so that I could give her an extra feeding because she couldn't have anything to eat after 1:30AM and her test wasn't scheduled to start until 10:30AM. I think she knew something was up because she was up almost the entire night. We got to the hospital at 9Am and met with the anesthesiologist at around 10:15. The finally took her back at 11:10, and not a moment too soon because she was hungry! And it was her normal nap time so she was getting fussy. They let me and Aaron go back with her while they put her under and while she was resisting at first, after four deep breaths she was out. It was really weird to watch her go out like that and I couldn't help but cry. The only real negative of the day was that I told both the nurse and the dr. that she's allergic to a certain type of tape - they told me they wouldn't use it, but as we went to see her in recovery the first thing we noticed were her eyes...they were swollen and had rashes all around them...guess what they used to tape her eyes shut??? It's so frustrating that EVERY TIME we're in a hospital setting they don't listen to me about the tape - like I would lie about tape, of all things!! She was still groggy when we they called us back to see her and it took her about a minute to acknowledge us, but then she smiled and flapped her hands as if to say, hey...I know you!! She was intubated so it was obvious her throat was sore and her lips were dry and cracked. Aaron had some blistex in his pocket so he coated her lips with that and it seems to have helped. We tried to give her an ice pop for her throat, but she wanted no part of it. I think the worst part for her was taking all the tape off from the IV - she did not like that, but I can't say I blame her. We wont have the results for a week or two due to the holidays, but overall it went well and I'm so proud of the super trooper that she is.

One pretty cool thing she's started doing...yesterday we had a follow-up appointment for her back brace. While we were waiting I said Alex, give me five if you're excited about Santa coming - and she gave me five. I asked her, give me five if you had a good day with Miss Audretta - and she gave me five. I asked her, give me five if you love me - and she gave me five. Then I said, give me five if you love me more than Daddy (shameless, I know!) - but she wouldn't give me five! So I said, give me five if you love Daddy more than Mommy - and she wouldn't give me five! So finally I said, give me five if you love us both the same and she smiled and gave me five!! Today her hair was a mess and I was talking about cutting it - so I said Alex, give me five if you want Mommy to cut your hair and she wouldn't do it - so I said give me five if you want to keep it long and she smiled and gave me five. Fifteen minutes later I asked her the same thing and again, her responses were the same. So I think I may have found a new way to communicate with her and that's really exciting!!!

Thank you so much for all of you that prayed for her and sent us encouraging e-mails - we appreciate that more than you know. She's resting peacefully and Zach is with my parents and his cousins for another night, so I'm going to finish up some last minute wrapping and calling it an early night.

'Tis the Season!

It's obviously the busiest time of year for everyone and the Hayes house is no exception! We have been out every night the past week with activities and festivities! Alex and Zach both had Holiday programs at school this week...Alex's was first on Tuesday night and she "performed" with her "typical" peers in the first and fifth grade winter program. She was Suzy Snowflake and her teacher, Mrs. Gibbons-Plowcha, was her "assistant" and dressed all in black and literally crouched behind her wheel chair and "danced" her with the rest of her class in the performance...obviously very moving for me and Aaron...here she is with her brother before the show and her and her snowflake wand after the performance...

Wednesday night Zach had his show and sang his little heart out...here he is in action, and another pic of him and his best buddy Aidan...

Thursday Alex's class had a party and the parents were invited...Alex's teacher made her a beautiful ballerina pillow and her friends in her inclusion first grade class (basically she gets to be included with "typical" first graders in music, art, lunch, etc.) made her a scarf...not shockingly, I was brought to tears that they thought of her and wanted to give her a gift.

I will say that I was very proud of myself as I finished my Christmas shopping. If you've been following the threads here you might remember in her birthday post that I mentioned I had dreams of Easy Bake Ovens and Barbie Dolls and felt sad that I still shopped in the infant section for her toys....well as I was shopping I thought to myself...why can't she have an Easy Bake Oven?!? She's doing so great eating, and I can work on fine motor skills helping her stir, and Zach can help her with the oven part...so I'm thrilled to say that I actually bought a gift for her that said for ages EIGHT and over!!!!!!!! Whoo hoo!!!!!!

We're gearing up for her MRI's on Tuesday morning, so if you would say a prayer for all of us, we would be grateful.

Angels Umong Us

You may or not know the history behind Alex's full name...her middle name is Elizabeth, given to her for a good friend of mine, Elizabeth McJunkins who passed away when I was three months pregnant with Alex. When we found out she was a girl, I knew I wanted to honor Beth by giving Alex her name.

This past week was kind of a tough one and I got caught up in all I had to do and struggling to fit everything in between dr. appointments, therapy appointments, obligations and life in general. On Friday as I sat down to go through the mail there was an envelope addressed to Alex, and inside was a letter to me from Beth's mom. The letter stated that their family had decided this year not to exchange Christmas presents and to take the money they would have spent to adopt Alex as their angel, in memory of Beth. I cannot put into words all of the emotions I had going on reading the letter. I cried for Beth, I cried for her family, I cried for Alex and I cried because I was truly, truly touched beyond words by their kindness. As hard as it is to care for Alex, God has blessed us time and time again, but I sometimes loose sight of that.

So to the McJunkins, Howard and Herzwurm families, thank you. Thank you for your incredible generosity and thank you so much for reminding me that there really are angels among us.

Quick Therapy Post

Alex was SO vocal on Monday at her speech appointment. Almost every question Beth asked her it sounded like she was saying "YEAH"...and she would look at her, but not be so intent on using her switch...almost to say - I'm actually TELLING you...I don't need that silly thing! :) In an hour session, she ate an entire jar of food - that's a lot considering she has to hit her "yes, please" switch in between when asked if she wants more. We're working with two switches now - yes, please and no, thank you...and a few times she hit no, thank you and Beth actually removed the food...so that's a really big step for her! On Friday she had her "pre-op" physical for the MRI's on the 23rd and she's four feet tall and 46 pounds..she's growing like a weed!

I took these with my cell phone, so they're not the greatest quality...

Frustrating Day...

From the minute I put my feet on the floor today it's been a trying day. Alex had a neurology appointment today because a week or two ago I was putting her hair in pigtails and the back of her head felt really weird. Alex has always had plagiocephaly (flattening of the skull), but it was so much more pronounced and the only way I can describe how it feels is like when a pumpkin or melon is going bad...that soft almost squishy kind of feel. Anyway, I take her to her appointment, and it's not one of my most favorite dr.'s to go see anyway, but he starts talking like he normally does at her check-up visits, so I tell him I'm not here for a check-up and tell him about the back of her head...so he ignores me pretty much and continues doing what he was doing - briefly checks the back of her head and says, yep, I feel it. No, I don't remember it being that pronounced before, or the "divot" being there, but she's grown so it's PROBABLY normal....ugggggggh. So I ask him if anything different should be looked at while she's having her MRI and he proceeds to tell me how imaging can be funny and maybe something will be picked up, and maybe not. Then tells me from the reflex test he did (which she pretty much always fails) that he doesn't understand why all of a sudden she wouldn't want to stand, sit or do any of the things that she stopped doing literally overnight because her reflexes were still the same...umm, WHAT? So then I ask him another question about something else that's going on and he looks at me like I'm a complete moron, grills me with questions, so now I do feel like a complete moron, and basically dismisses me.

I leave there and know that I have to run an errand - I had already picked Zach up before her appointment so I was going to just run to Target quick because Alex was out of food and Zach has a Christmas Mother present that's due. The more I think about the appointment as I'm driving the angrier I'm getting. We get to the store and I HAVE to ask this...WHY do people think that the handicap spots are extra spots for the shopping cart return? Does the big blue handicap sign LOOK like a shopping cart return? I mean seriously, as if the people that are going to need that spot are in the position to actually have to clear all the carts so they can park in "their" designated spot. And it's not just today because I'm already in a pretty cranky mood, it's ALL the time and it has become one of my biggest pet peeves. Even if I don't have Alex with me and I park in a "normal" spot, I always collect the carts from the handicap spots I pass before I go into the store because they shouldn't be there in the first place. Sorry I digressed...any way, at this point Zach has fallen asleep, great. I'm unloading Alex, who is connected to her feeding pump, and of course, when I connected her in the parking lot at the hospital after her appointment, I connected her in the way that I have to totally disconnect her so I can get her out of the car seat because the tubing is looped around her car seat strap. Twenty minutes later I have her in her wheel chair and now I'm pushing her and lugging a 40 pound sleeping four year old. Why I'm a glutton for punishment and didn't just give up and go home then I do not know...I always think "I got this"...and in hindsight realize I probably didn't make the best decision...but oh well. So I run in, pushing Alex and dragging a shopping cart behind me...as I'm getting Alex's food she has a complete manic attack and is screaming/laughing at the top of her lungs and pulling her hair out, Zach's whining about how hungry he is and at that point I give up. I check out and start lugging them back to the car. As I get to my car there's a boy collecting the carts who obviously has special needs himself and he looks at Alex and says...she's special, I can tell. And I said yes, she is, she's very special. And he said, well at least you have her and she didn't die. I don't know why but I drove away smiling and thanking him for putting my day in perspective.

My night hasn't gotten any better, Zach is trying my patience like nobodys business, he's also apparently lost his listening ears, and Alex has been a total crank. My head is about to explode so I'm going to crawl into bed and thank God this day over and pray it's a better one tomorrow.

More Stuff!

So let's see, the house looks like a Physical Therapy facility on any given day, each day we have to put on glasses, foot braces, thera-togs, bandannas, clip on chewy P's, arm bands and her backpack that holds her feeding pump ~ what else could we possibly throw in the mix to keep things exciting? Ohhh - I know - a back brace!!! Plus, that will add about 8 more pounds while lifting her so Mommy will get that much more of the great arm workout that she's always talking about!

Alex's Orthotist, Paul, was actually quite funny about her brace. It's a new design and pattern and Alex is the first in the area to have this type of brace - so he was very excited that she's the little proto-type for this brace. We'll use it anytime she's doing supported sitting, or going to be in her wheel chair or stroller for long periods of time to help with her positioning. We wont use it during standing or walking exercises since we want Alex to use her trunk muscles and strengthen them as much as possible. If she were to wear the brace all the time, she wouldn't work those muscles and her tone would just get worse, if that's possible! :)

So here's the fashion diva in her new brace...

She thought this was funny - but it CAN'T be comfortable!

Would it be mean to start calling her my little turtle?!? :)

Much to be Thankful For

Happy Thanksgiving! First my little "funny"...I was cooking for Thanksgiving and having my parents, brother, sister-in-law and mother in-law. My bird was a pain from the get go and despite being in the fridge for five days, was still frozen Wednesday night. So Aaron and I put the bird in the sink at midnight to soak. I woke up Thursday morning and felt TERRIBLE...knew I had to get the bird in the oven so I went down to the kitchen not at all with it but prepped the bird and got him in the oven. An hour later the house started smelling like Thanksgiving, I basted the bird a few times and six hours later I take him out of the oven...only he looks weird - I can't put my finger on it and call my mom to tell her he looks funny and his legs look a little weird. She assures me it's fine. Well, she gets to my house about an hour later, takes the foil off and immediately says DONNA! You cooked the turkey UPSIDE DOWN! UGGGGGGGGGGGH! I was SO upset and couldn't believe I had done that!!! After everyone was done laughing about it and getting in their countless upside down jokes...my dad flips him over (he did not look pretty at that point!) and put him back in oven to brown him again. I should have taken a picture, but even though he wasn't the Norman Rockwell vision of a turkey, he was the moistest turkey we had ever eaten and the rest of the spread was delicious! :) My sister-in-law called me yesterday to tell me that Chef Wolfgang Puck always cooks his turkey upside...so I guess I shouldn't beat myself up too much??? At least we made a great memory, right?!?

We have lots to be Thankful for this year...Alex is continually making great strides. We are blessed in so many ways and though I've said it before, we are so thankful for our amazing family and circle of friends.

Happy Birthday Sweet Girl

Seven years ago my life was changed forever and we were blessed with Alexandra Elizabeth Hayes. It's hard to believe it's actually been seven years. Roads we've been on have been long and windy, but our journey is still so new in some ways. I'm usually a little sad around Alex's birthday, or maybe it's a little more grieving for what I thought was supposed to be. Growing up I loved dolls and all things girlie - when we found out we were having a girl, I had so many visions in my head of the things we would do together and the fun I was going to have reliving Easy Bake Ovens and Barbie Dolls. Instead, I still shop the infant aisles looking for the latest and greatest toy that will sing and light up. For some reason though, this year was different. Yes, I got a little sad when I passed the baby doll aisle and her birthday presents are 6+ month toys, but this year was easier. As I looked around the room at the little party we had for her today, the room was filled with so much love for her. She is loved by so many people. She has the best family in the world - and I have met some of the best friends that I never would have met if it wasn't for her. Alex is happy, and Alex is loved beyond words ~ at the end of the day, that's what is important. So happy birthday my sweet sweet girl...Mommy loves you more than any words can say.

Birthdays and a LONG Weekend!

Aaron's dad had a birthday on the 8th, his grandmother turned 89 on the 14th, my grandmother turns 94 on the 18th, Alex will be 7 on Sunday and my dad will be the big 65 on Sunday...whew!!! There was a little party for Aaron's grandmother on Saturday that we wanted to go to, but the drive to Albany is too far for Alex (she refuses to sleep in the car..she never has...) and the airline tickets were over a thousand dollars. It so happened that my parents were heading up to New Jersey this weekend also to see my grandmother, so we tagged along. I have not seen my grandmother since my wedding (over 9 years ago) and she has never laid eyes on my children...how terribly sad is that? She prays for Alex every single day and she told my dad the one thing she wanted to do before she died was to hold Alex. She is pretty unbelievable - she still lives completely alone and gets around with her walker like nobody's business! I told her today she didn't look a day over 8o :) I was so glad we made the trip...when we first got there she wanted Alex right next to her and she cried while telling Alex how much she loved her and how she prays for her...and Alex actually reached up to touch her face. It was so obvious how happy my grandmother was to see the kids and how much the trip meant to her. So we were gone 34 hours and spent over 15 of those hours in the car, but it was really worth it.

Reaching out for her great-grandma's face

Zach meeting his great grandma D for the first time!

The "DePasquale" clan

Me and my Grandma

One last kiss

The kids did SO awesome all weekend with all of the driving we had to do - I am SO proud of them.

Thank goodness for the DVD player...I think Zach watched 7 movies!

Look at those eyes - one tired little girl

Quick update on Alex's MRI's...her neurologist does want to have her brain done, so they have both been scheduled for December 23rd at 6AM...uggh. Not exactly how I want to spend two days before Christmas.

I'm exhausted and heading to bed...poor Zach - I promised him I would read him a story right after I checked my e-mails...and, well...

within 2 minutes he fell asleep on the floor waiting for me...obviously it was a long weekend :)

Yesterday's Dr. Appointment

So we went to see Dr. Atkins yesterday about Alex's scoliosis and some other issues. What an ordeal. First, Alex thinks the funniest noise in the WHOLE world is the sound of the paper that they put down on the examining tables...so that started one of her manic episodes. Laughing, pulling her hair, etc. By the time the Dr. was done examining her the paper was literally shredded, I felt like I was dealing with an octopus! Then off for x-rays - in her chair, out of her chair, in her chair, wrestling with her, out of the chair, in the chair, out of the chair, into the car...I was sweating when we left!!

The end result is that in a lying down position the degree of her scoliosis has not changed...that's the good news. The bad news is that her postural curve, meaning how she sits, has gotten much worse. She leans so far to the right that it's affecting how she uses her hands. So next Friday we go to have her fitted for a brace that she will wear while she's in her wheel chair or stroller, or for any other sitting activities. We don't want her in the brace the entire day, because her trunk is so extremely weak that she still needs to be working on strengthening those muscles while she's in her stander, walker, etc. The other half of the appointment we talked about how Alex has lost some of her skills. For a few months Alex was doing amazing with her walking - taking steps without prompts in her walker, weight bearing for long periods of time, sitting, etc. Now she refuses to sit independently, she wont weight bear for longer than a second and she wont take any steps in her walker. So she's being scheduled for an MRI of her spine to see if there's been any damage, and she also wants me to talk to Alex's neurologist and have an MRI of her brain done at the same time to see if there have been any neurological changes. The part I hate is that she has to be completely sedated and because of her neurological issues, she's at greater risk for things to go wrong. Dr. Atkins is a wonderful doctor and she truly sees the whole big picture - worrying if I'm lifting correctly, if I'm getting enough rest, etc. but she did mention something about the urgent need to get her weight bearing because if she can't start transferring herself (even with support), that as she gets bigger and heavier, alternatives to look at were basically to move her into some place - granted she was referring to year's away, but it's just not an option I would ever entertain - just the thought of her not being down the hall from me terrifies me. I'm trying to keep my glass half full, but I got total flashbacks to five years ago when all we were doing was testing, testing and more testing, the projections were always worse case scenarios and it was never ending. I had a pity party for myself and cried on the way home because sometimes this roller coaster ride is just too much. Her cognitive skills right now are getting so strong and we were so happy with all of the motor skills she was acquiring too that it just seems so unfair that it was so short lived. I know God has a plan and will get us through, and I hope months down the road we will look back in hindsight and know why...every time we've dealt with blows, we've been blessed in some way.

Where do I begin?!?

Things have been pretty hectic and I swear I just don't know where the time goes! I guess I'll start with Halloween..Alex was in a take it or leave it mood. Although she enjoys being outside and seeing everyone, she's been working on getting sick and really wasn't in to it this year. Zach started out strong enjoying himself, but by the last few houses I think he was probably the only kid to ever say "can we be done please? I really want to go home!" Here's my pirate and cheerleader:

My Pirate

Rah! Rah!

I love the way she looks at her Daddy

The next morning we had our neighborhood Fall Festival. I'm on our neighborhood board so I left the house around 1:00 to start setting up. The festival itself ran from about 2:30 until 7 or so...all of the neighborhood kids had a great time - we had a moon bounce, cotton candy machine, popcorn machine, pumpkin decorating, a pumpkin pinata, games, food and on an on...Alex held her own for the first hour or so and then she was done. Lucky for us, my parents had taken a scenic drive to see the leaves and stopped by on their way back to see the kids, so they took Alex home and got her comfortable while we stayed at the party ~ which was a nice treat.

On Sunday we had our family day. Went to church and then back to my parents house for brunch. We took a really nice walk down by the lake where they live...the trees were absolutely beautiful - I have no idea why they didn't just sit on the dock there the day before rather than wasting gas to go up to the mountains ;0)

I love how she's been sitting lately with her legs crossed!


Alex wanted no part of this picture - but we did try!

Papa's girl...her most favorite person


MeMe and Papa

Yesterday was a pretty draining day. Both kids were sick and that's just how the day started. Alex was crying and crying all day - and that is just so not her and her personality. After a trip to the doctors office I had to take Zachary to a prior scheduled appointment to go see a specialist because his feet are pronating (rotating in) and affecting his knees. After that we ran home because it was time for Audretta to leave. Aaron flew in at 3:10 and I flew out because I had a parent/teacher meeting with Alex's teacher at 3:15 which turned out to be the best part of my day. She said Alex is just so much brighter this year, she's getting things so much quicker, she's more alert and interactive. We are really starting to stress communication skills with her and right now are working with pictures and voice activated switches. After I got home from that we had errands to run. After dinner was done Zach and Aaron sat to watch the football game and I went off to the computer to work on some communication boards for Alex. It's my first time using this particular software so at 11:15 I finally finished making a "body parts" board for her. I really want to work hard with her on identifying the parts of her body. The most frustrating thing for me as her mother is to see her cry and be in obvious pain and have no way to tell me what's hurting. They use a similar type of board in her classroom for her to tell everyone how she is feeling - happy, sad, silly, tired, sick, etc...Almost every day Alex picks that she's in a silly mood (very true!) occasionally she picks tired, or frustrated, and it's usually right on with her mood. This year her teacher moved where the silly picture was on the board, and Alex still picks silly...so we know it's not just where it's placed on the board. Tonight I played some computer games with her that they use at school using her switches and she did so well! After that we worked with a lot of yes/no questions. Her homework assignment for tomorrow is if she could dress up and be anything she wanted what would it be...so I printed a bunch of different pictures - a nurse, a teacher, a doctor, etc...I also printed a picture of a ballerina and she picked that every time - I got her yes/no switch and asked her - are you sure you want to be a ballerina?!? And she squealed and hit yes...I changed the position of where yes and no were on the switch and asked her - are you really really sure?!? And she hit yes again! I'm so excited about the millions of things I can do with this program!

Today we had PT and her thera togs arrived so she will start wearing them again every day - basically it's a compression suit that makes Alex aware of her body. Tomorrow is a big day - we go see the dr. again about her scoliosis. It's been about six months and we know the curve has gotten worse. So I'm anxious to see how much worse and what the next steps are. It's actually starting to impact her in a pretty big way. Alex has always shown a right hand preference - but that's the same side her curve is on and now she's starting to do almost everything with her left hand. I think it's too much work for her to lean away from the curve to try and use her right.

Ok, this is a way longer post than I had anticipated! I'm off to New York on Thursday for what I must admit is a much needed Mommy alone time trip.

Oh, two more pics :0)

Zach at the neighborhood party on his FOURTH cotton candy!

Me and my sweet girl

Zach at the pumpkin patch

Zach had a field trip today and his principal just sent this to me...I couldn't resist posting it! :)

Feeling Horrible

I feel so bad tonight. Alex was having her tube feeding while sitting in her Wombat Chair (glorified high chair)...she had only slept for 15 minutes at school today because she's coming down with a cold and every time she fell asleep she woke herself up coughing. So around 5:45 she was looking completely miserable and I decided to take her out of her chair to put her PJ's on and get her comfortable. I made sure I cleared the line from her chair and then took her lap belt and shoulder straps off. What I didn't realize was that the straps blocked the line again so when I went to lift her from the chair, there was no give in her feeding line and the g-tube in her stomach became half dislodged. Not only did I freak out (I DON'T do well with anything going wrong with her feeding tube, at all...that's Daddy's gig), but she started screaming. Of course it was an accident, but I just feel so bad. I gave her Motrin, but the whole time I was laying with her while she was going to sleep she just kept moaning and rubbing her poor stomach. The look on her face screamed to me "Mommy what did you just do?!?" I know she doesn't understand it was an accident so I just feel horrible.

Alex's School Picture

Here's her school picture we got today...even though they didn't fix her dress right, I still think it's a sweet shot of her face.

A Zach Post

Yesterday Zach had an all day appointment with Richmond Allergy and Asthma Specialists to see what he's so allergic to that he literally gets sick every single month for two weeks at time. The end result? I'm going to move him into a bubble! :) Basically he has asthma and is allergic to everything in the environment...dust, dust mites, pollen, mold, trees, grass, weeds, fungi, etc. AND Aaron must have been praying extra hard, because his allergies to cats are off the charts. We'll see what this means for poor Max. I have to tell you that he was so good, and so brave - I was really proud of him. I didn't make a big deal about the appointment, I just told him we had to go see the Dr. to find out why he keeps getting sick and why he had such a bad rash last week. When we got to the office he said, this isn't Dr. Snowden (our pediatrician) so I told him we were seeing a special Dr. and he asked "Are they going to give me a shot!?!"...I didn't want to lie not knowing what we were in for so I told him I didn't think so but I didn't know for sure and he seemed content with that answer. When it finally came time for the dreaded prick test on his back, the nurse had me sitting up on the exam table with me holding him into my chest. Two nurses came in and held his arms behind my back. I couldn't see his face as the test started but after the 30th (45 in all) prick, one of the nurses behind me said "It's ok Zach, you can cry"...as soon as she told him that he busted out crying. But he was trying to be so brave and not cry - he actually waited for permission...broke my heart! :( We all made a big deal about how brave he was and he was obviously quite proud of himself. Aaron made a huge deal about it when we got home and then a trip to Chick-Fil-A for nuggets and some time in the play area, accompanied by a trip to Target for a special treat and all the world was right with him again! :) He started on a new medication and this weekend we'll have to make a bunch of environment modifications, especially in his room, but hopefully we can put an end to the monthly Dr. visits and nebulizer treatments.

This weekend was hard as a single parent - Aaron was gone on his semi-annual four wheeling trip. He left Wednesday and didn't come back home until Sunday...ugh! But we muddled through and had fun by ourselves! Saturday we went bowling with our neighbors Noreen, John and their son Sean. I do believe that Alex has a crush on Sean! The boys were so sweet to Alex the entire time we bowled, helping her every time she was up. I'm embarrassed to admit that Zach beat me (or should I say everyone beat me?!?) the first game, and Alex beat both the boys the second game! I love the ramp that they have there so she can bowl! She had the best time - laughing every time she pushed the ball...and she sat so calmly while everyone else had their turns just watching. Definitely something we will go back with her to do!!

Alex can't take her eyes off Sean!

Clearly she enjoys bowling!



Let's Roll!


Noreen, John & Sean


Zach & Sean

Pictures by Paige

I had posted about us having our family pictures done by Pictures by Paige...well I just got the proofs and I couldn't be more thrilled. The way Paige captured our family is amazing. Taking pictures with Alex in a traditional setting has always been near impossible, and I've often left so sad because we weren't able to walk away with the picture I was hoping for...well now I have so many to choose from! If you would like to view them, visit www.picturepaiges.com. Visit her blog first, and then click on online viewing to see all of the shots. From the drop down menu select hayes family, our password is alexandzack. I love so many of the pictures that she captured of us interacting as a family, and not posing. Paige was so patient with us and let the kids lead the way. If you're considering having any pictures done anytime soon, I HIGHLY recommend you contact Paige!!

Will post more about the week later today...

Where did the week go?!?

I can't believe a week has gone by already! Obviously things in the Hayes house are busy! Alex is continuing to improve with her eating and using her communication switches. Yesterday we worked with using a switch that's connected to a dancing duck...the way she responds and laughs at the toys is so fun to watch! We've just ordered new switches and toys for her to use and will start working with using a switch to activate the computer at home - I'm really looking forward to that. It's really hard to find things to do with her that are totally engaging for her, but all of the interest she's showing in using her switches is very promising for us.

Yesterday was a crazy day - Zach had no school so he came to work for a 1/2 day with me (not a real productive work day for me...hope my boss doesn't read my blog!) and then I had to take Alex to the dr. when I got home...while we were at the doctor Aaron got into an accident (he's fine, but he was stopped at a stop sign and was rear-ended by a kid doing 40 miles an hour). Sunday after church we went back to my parent's house as usual for brunch (I think it's Aaron's favorite part of Sunday!) and Alex was not in a good mood, her coloring was almost green and she was having some stomach issues. When Audretta called yesterday to give me the update from her day at school she said Alex just wasn't herself and cried on and off throughout the day. I don't know why I bothered to waste 2 hours to take her to the dr., because of course, it's obviously something viral. I love how that's the standard answer instead of "we just don't have a clue!" It's a running joke since they can't figure out anything with Alex that she's had a virus since birth. :)

Probably not very interesting for anyone, but very exciting for me is that when my parents kept the kids for us while we were in Vegas, they started talking about how horrible Alex's onesies are...let's face it, you can only stretch and X-Large onesie so far when she's 45 pounds and over 3 1/2 feet tall! But I hate not having one on her with her feeding tub - I'm always afraid it's going to get caught on something or she's going to pull at it. So my dad came up with an awesome idea to convert dancing leotards into onesies...you go dad! So my mom walked her feet off at the mall searching for short sleeved leotards and then brought them to a seamstress who cut them and put snaps in the bottom...and viola, we now have fabulous onesies that actually fit and aren't ripped!!! Thanks mom and dad! :)

Because I can't post and not add pictures, here are some pictures from the weekend!

The Weekend

We had quite a busy weekend...Aaron and I had a night out Friday, we went to the state fair, Aaron's Aunt Helen from Albany was in town, had family portraits done, ran errands, and on and on! The state fair was fun, but boy have times changed. First I couldn't get over the amount of people, and second, the prices! The ticket lines for the rides were over a hundred people deep alone. Remember when you could play the midway games for a dollar a game? Now they're $3 a game - seriously, $3 to shoot water into a clowns mouth?!? Thank goodness I won and walked away with a baby elephant as a souvenir! Of course I have to add pictures, so here are a few:

Aaron and Zach before we go see the animals

Aaron and Zach trying to win!

Alex trying really hard to get into that $6 bag of cotton candy!

Alex and the winning elephant!

Sunday we had family pictures done by Pictures by Paige - she wins the patience award! From the few that I saw I'm really anxious to see the proofs...I'll post a link to them when they're up!

Yesterday I had to take Alex to an ENT doctor. If you were following the posts from Florida, you might remember that she went from never having an ear infection in her life to having 4 in three months. So the outcome was that she had an impacted ear drum, and the dr. didn't really think she ever had ear infections at all (gotta love the four rounds of anti-biotics that means she didn't need!) So we'll go back in six months and he'll see if she needs to have her ears cleaned on a routine basis.

That's it for now!

Happy Anniversary!

Today we celebrated our nine year wedding anniversary. I can definitely say that nine years ago as we danced and didn't have a care in the world that we never could have imagined that our journey together would lead us where it has. In a statistical world, we shouldn't be together - 70% of marriages end in divorce when a spouse has the job that Aaron does, and over 83% of marriages end in divorce when there is a special needs child involved. But we defy the odds and we continue, every day, to make our marriage work. We certainly have our bad days, sometimes it seems like the bad days want to outweigh the good, and there are days when he gets under my skin and I under his...but at the end of the day, we circle back to what is important - our commitment to each other, and our commitment to our family. We have trust, we have faith, we have hope and we have love. And as my mother likes to teach Zachary, "and the greatest is love". I can't imagine being on this journey without Aaron. He is the best father, dedicated to his children, morally committed to what is right in their upbringing, and even when I'm at my worst, committed to making me happy (and I'm not too bad at doing the same for him!) I look forward to continuing our journey for another nine years, and another nine after that, and another nine after that...

Back from Vegas!

We're back! I had such an awesome time in Vegas! (You might not get the same kind of enthusiasm from Aaron, but that's just because he doesn't like parting with his money!) I'm not much of an architectural person, but I could not get over the hotels there, one was so much more impressive than the next...Cesar's had a mall double the size of any I've ever been in, MGM Grand had a 9 MILLION dollar lion habitat with real lions, New York New York had a roller coaster, the Venetian had gondola rides, I mean, seriously! We went with our friends Jerry and Dara (who you can never have a bad time with!) and had the best time sightseeing, going to Red Rock Canyon, shopping, eating and gambling...it really was an experience and a place I hope to go back to!!

The kids did great while we were gone - I know my parents are exhausted! The house was immaculate when we got back, there wasn't a piece of laundry to be found, my dad and Zachary planted all of my Fall flowers in front of the house - on top of keeping up with the crazy routines around here. Even Max (the kitty) was on medicine and had to be kept up with!

We got in late Sunday night and Zach had fallen asleep 10 minutes before we got home so we didn't get to see the kids until Monday. When Alex woke up and I went in her room she looked up, then realized it was me and started yelling and flapping her arms. When I picked her up she hugged me, pushed away so she could look at me and then hugged me again - it was priceless. Zach was so excited when he got up too. It's been hard getting back in the routine - Alex even missed the bus yesterday morning! :)

Alex had Physical Therapy today and when I picked her up from school to head to our appointment, Audretta (her nurse), said she had the best day...she said she sat in front of the computer at school for FIFTY MINUTES and used a switch to activate a computer program ALL BY HERSELF for the ENTIRE time!! That is huge. I swear her concentration and focus has changed so dramatically since Florida. She said she also had art class today and reached out to pick the colors she wanted to paint with. Yesterday we had Speech therapy and I had Zach home with me (we're both sick :( ) so I didn't stay in the room with her because Zach is a huge distraction to Alex. When her session was over Beth said she used her switches with 100% accuracy. I am SO proud of all she's doing!!!!

Today at PT we started out working on her sitting - she's always been a "scooter butt", but lately she just doesn't want to sit at all. So while she was sitting they worked on her activating a See N Say toy. The video was too large to import here, so I'm including a You Tube link. Shannon and Sandra (the therapists) said Alex is now primed for Vegas as she's got her "slot pulling" arm going!! :)

http://www.youtube.com/watch?v=MQxpwhQBVT4

Part II - "More Please!"

We're working really hard on feeding, and while we have a long way to go, I'm so proud of the progress she's making every day, not only with her switch, but with actually swallowing her food. She's genuinely showing a huge interest in food. Yesterday we went to my parents house for brunch and she was sitting at the kitchen table with us. When my mom put a platter of food on the table, Alex got so excited she knocked over Zach's orange juice. When we have dinner, it's impossible not to give her a little something because she watches every single bite we take. So I'm prepared for the long haul in the time it's going to take to continue to strengthen her muscles and get her swallowing coordination down, but she's showing me every day that we will get there...I just need to have patience, and when she does it, we will have a HUGE eating party for her (I hope everyone likes Gerber's Stage 3 Vegetable Beef!)..kidding :)

Aaron and I are off to Vegas Wednesday (me for work, him for fun!) so I wont be posting again until sometime next week!

Part I - Fun at Therapy

We had speech therapy today with Beth and some of the things she works on other than eating and oral motor skills is purposeful play, and cause and effect switch toys (if I hit this, this happens). So Beth has this giraffe that hooks to a switch that she introduced about two weeks ago. After the giraffe walks for a bit, it makes this funny noise that just CRACKS Alex up...I can't help but laugh watching her...she cracks me up! Here's a video of her laughing at the giraffe...

New Emerging Skill

Last week at speech therapy Alex actually sucked on a straw...it's not actually a conventional straw, but a bottle made out of a hair dye bottle with tubing as the straw...but it was the first time she has sucked anything other than her thumb (which is new too) in over 5 1/2 years! We've been working on it all week so I was excited to go to speech therapy but her therapist had to cancel this afternoon. So Alex and I had our own therapy session and here's the first "attempt":

I then got the brilliant idea to add blue Kool-Aid (what was I thinking?!?) to the bottle so I could actually see how much she was sucking in...her face when she sucked and got that new flavor was priceless...I wish I had my camera on for that :)

We are still working on the suck and then swallow process, but she's trying hard! Here's one more with the Kool-Aid...(warning if your volume is up - she squeals a little bit!) I did eventually get a video of her sucking twice and swallowing, but it was too big to upload here...

Med Changes

This is my first time at a true blog attempt - so please bear with me as I figure out what I'm doing and tweak it as I go! Before I start, a big thank you to Christy who helped me set this up!

Now on to the actual post!!

When we were leaving Florida, the Dr. there suggested we try and wean Alex off of some of her meds. The reasoning is that the purpose of the hyperbaric treatments is try to heal and awaken neurons in Alex's brain and some of the meds she is on suppresses those neurons. So we met with her neurologist on Monday and we discussed weaning. Two of the meds specifically are Clonodine for sleep and Tenex for her "manic" behaviors. Monday night we started giving her 1/2 a pill for sleep and she seemed to do just as well. The Tenex on the other hand is another story! To give a little insight, Alex gets VERY excited over certain things and cannot control her excitement. She squeals and yells so loud that glass could break, she pulls her hair and she laughs uncontrollably - but I'm all for her being more alert. Well, careful what you wish for, right?!? She did great at school yesterday and today being on half a pill of Tenex. So when she got off the bus I put her right in the car to head out and do some shopping. The car trip to the store was an experience in itself - I have never seen her so out of control! Once in the store she did fairly well, but there were a few screams throughout the store that I swear the mannequin's cried :) I've stopped looking around at other people's reactions, I mean it is what it is and I can't take it back so I don't want to see disapproving looks, or that same look on peoples faces after she's scared them half to death! Is that wrong? I just don't feel like I need to acknowledge them staring and apologize for something she clearly can't help.

Anyway, we finished up our shopping and went to pick Zach up from daycare - and she was clearly excited to see him.

I ran out of baby food today (of course I didn't realize it until I went to the pantry to get some), so I opted to feed her some chocolate pudding while Zach and I (or should I say while I ate my dinner...) Here is her happy chocolately self!

So that's it for my first true post!!

So Here It Goes!

After the updates from Florida I got so many suggestions that I start a blog...so here we go!

Hyperbaric Oxygen Therapy - A Year Later

First Round Of Hyperbaric Oxygen Therapy

Angelman Syndrome Walk