I thought I would have to teach my daughter about the world; turns out I have to teach the world about her. They see a girl who doesn't speak,
I see a miracle who doesn't need words.

Tuesday, August 31, 2010

How I Spent My Saturday...

I LOVE, LOVE the fact that Alex is eating by mouth - and she is up to 14-16 ounces of food PER MEAL!!!  She's also drinking 2-4 ounces of pediasure, PER MEAL!  It's such a huge accomplishment for her and I love that I get to control what she's eating...BUT - man is it A LOT of work prepping her meals!  I spent the entire day Saturday cooking and blending.  I started at 9:00AM, and minus a trip to the grocery store, I didn't finish until almost 7PM.  I should have taken a picture of what my kitchen looked like by the time I was done!

So here's what two weeks worth of breakfast and one week worth of lunch and dinner look like!


Friday, August 27, 2010

I Think I'm Going To Have A Good Cry

Actually, I've already had a good cry - and a few tears in between.  We found out this week that Jennifer will be leaving us in less than two weeks.  I honestly am really emotional about this.  We knew the day would come that she would have to leave and get a "real job", but I'm not ready for it!  Jennifer has become part of the family, and while I know we will always be in touch, visit, talk, etc., it just isn't going to be the same.  I had no idea when we first met her how incredibly special she would become to all of us.  When I told Zachary that she was leaving, he asked me why - I told him that she needed to get a new job, one that paid her more money and he said "She's like my best friend mom, just pay her more money, ask Daddy, he's got lots of money" :)  Oh how I wish!  I need to win the lottery. 

Jennifer set the bar so high in the care that she's given Alex that I don't think I'm going to find that in anyone else.  She has always thought outside of the box, has come up with new and crazy things that make Alex giggle and laugh, she reads and researches different aspects of Angelman Syndrome and wants to understand everything about Alex and why she does some of the things she does, she cries when Alex is upset or sick, she really gets it that Aaron and I need alone time and is genuinely happy when we tell her we're going out on a date - I could go on and on.  "Beans", as we like to call her, isn't a job to Jennifer, they are buddies, friends, pals.  Jennifer and I were talking about her leaving the other day in front of Alex, and I'm not sure if it's coincidence or the fact that Alex knew what we were talking about, but she got mad and real fussy and refused to look at Jennifer the whole rest of the night. 

I'm really happy that Jennifer got a job, and that she's excited about it, but I'm also so incredibly sad at the same time...how is it possible to have two completely opposite emotions going on at the same time?!?

We love you Jennifer, I know you will always be a part of our lives, but we are going to miss you terribly.  THANK YOU for all that you have done for Alex and our family.  You are a very special person and we are so lucky to have had you for the time that we've had.

Thursday, August 26, 2010

Eye Gaze Appointment

I think, overall, the appointment with the vendor for the eye gaze communication system went well.  There were a total of 10 people in the room, and it was in a different room that Alex normally has therapy in, so she was quite distracted, to say the least.  The vendor was trying to calibrate her eyes to the system, but all Alex wanted to do was look at him...she was staring and smiling at him almost the whole time like "hey, who are you?!?".  The vendor actually used Aaron's eyes to calibrate the machine - because they have the same genetics and the same eye color, the calibration would be really close, not necessarily 100% accurate, but close enough.  When we tried to get her to continually focus on the machine she would get distracted by someone opening the door, or talking, or Aaron or the rain stick they were shaking at the system to get her attention, so that was really the only frustrating part.  I really wanted to take pictures and post what the system looks like, but the vendor said the flash from my camera would screw up the cameras on the system that were tracking Alex's eyes.  Overall, the potential with this system is amazing.  So, the plan for right now is that the vendor is going to get a loaner system to Children's Hospital in about 4 weeks.  At that time we are going to bump Alex's speech therapy up to 2-3 visits a week to get her used to the system.  If she makes significant enough progress, which we believe she will, a letter of medical necessity will be written for Medicaid to get her a loaner system that we can use at home.  After the trial period, if we can prove she can use it, a system will be purchased. 

The vendor told me he had worked with a lot of kids like Alex and that practice, practice, practice is going to be the key to her success.  He told me he never guarantees the system will work for kids like Alex, but that he thought it would.  He stressed that is a whole new learning process for her and we have to get her to understand how the system works, and that really it is a learned skill that is just going to take time for her to develop.   So overall, this is going to take a huge time commitment on every one's part, we all have to continue to work with the pictures we are working with at home and school to continually get her to understand the cause and effect that if I look at "X", "X" will happen.  I am confident that she can do this.  She has been 100% accurate with the picture system we are using at home.  I think once we have all the pictures of the things that truly motivate her loaded into the machine, which we will be able to do with the loaner system, that she will get it.  Anytime we introduce something new it just takes her a while to 'get it'. I am 100% committed to this process, I am determined to do whatever it takes to help her master this - the end result, her being able to communicate with us, is just to important to us as a family.  Last night I was thinking about all of the possibilities the system can offer and all of the ways I can reward her and what new pictures I need to take.  Then I thought about taking pictures of all of us and the thought of potentially loading a picture of me, or Aaron, or Zach, or any family member for that matter and having the system say "I love you" for her literally brought me to tears.  So yes, we WILL make this happen!

Monday, August 23, 2010


After I posted on Friday, Aaron called me at work to say Zach was still vomitting and couldn't even keep water down. I left work and when I got home Zach was laying on the floor in his bedroom and was very lathargic. I loaded him up in the car and headed for the pediatrician and as soon as we walked through the door he starting vomitting (thank goodness I thought to grab a bucket before we left!)

They ran a bunch of tests, including a flu test, which Zach screamed and fought to avoid. After a blood and urine test, the doctor came back and said that the ketone levels in his urine were 165. I asked what they should normally be and the dr. said zero! He was severly dehydrated and they prepared him for IV fluids. Poor little man was so dehydrated that they couldn't find any good veins to start the IV, and the four times they did try, his veins rolled and we had start all over. Needless to say, Zach was not a happy camper.

I'm happy to say that after two rounds of IV fluids and an IV dose of Zofran he started perking up. Not to be out done by his sissy, when he gets sick, he does it in a major way! I couldn't believe how quickly he became so dehydrated. I had contemplated not taking him and just trying to hydrate him with gatorade and ginger ale, so I'm glad I went with my gut. He is definitely feeling 100% better.

I got a phone call from Alex's speech therapist last week and they have scheduled a vendor to come see her this Wednesday to look at getting her an eye gaze communication system. Wednesday cannot come fast enough! I HOPE Alex cooperates for the vendor and this is something that we can incorporate. To think that she might have a 'voice' in the near future is just too thrilling to not get excited about!

Friday, August 20, 2010

Oh Boy...

What a week...I took both kids to the doctor on Monday - end result they said was Alex had a bad head cold and Zach's problems were all related to his allergies. Wednesday I picked Zach up from camp and he was running a relay race. We got in the car and he was coughing a deep 'barking' cough...by the time we got home his breathing was incredibly fast so I started breathing treatments with his nebulizer - by 9:00 that night his fever was 102. I had to wake him up several times Wednesday night because of his breathing for treatments. I had him sleep in my bed and his wheezing literally woke me up. I stayed home with him yesterday and we just had a real low key day. I got up this morning and went to work out and he was sleeping - when I got home and started to get ready for work he ran into the bathroom and started vomiting. Ughhh - clearly not allergies as originally thought. Alex is still not over her cold either, but she's as happy as can be, so that's 'good'! Aaron and I were supposed to head out of town for the night, so obviously that's cancelled...should be a real 'fun' weekend! I just hope he feels better soon - I hate seeing him so pitiful. :(

Wednesday, August 11, 2010

Let's See...

Piggy backing my last post - here's some updates. The birthday party on Saturday - didn't happen. Well, the party did, Alex just wasn't there. She started with some low grade fevers on Friday and was miserable all weekend. Not only was she miserable, but she was completely emotional, all she did was cry. Alex is not a crier, so when she puckers out her bottom lip and cries it's really heartbreaking to see her like that. I've said it before, I'll say it again, and I'm sure I'll repeat myself in many posts to come, but the hardest part about having a non-verbal child is knowing she is clearly hurting and she can't tell me what's wrong. There's only so many guesses I can make and so much Tylenol I can give. I tried Sunday to take her to church thinking that getting her out of the house might do her good and seeing her Papa might lift her spirits...not so much. Papa sat and rocked her the entire service and she laid there dazing while her cries continued. Monday it finally hit me what I "think" the problem might be. Let's see if I can put this tactfully....(thinking, thinking, thinking), ok there's no tactful way to say it - she can't poop. I said in my last post that she was drinking 2-3 ounces of thickened pedisure from her squeeze bottle - I think the thick-it that we are using to thicken the liquids is thickening everything. I had to give her two enemas in less than a week - and believe you me, it is not a fun time for anyone involved. Sigh - it's not been a very good week.

I was SO excited to have an appoinment Monday night to look at the wheel chair vans. Was, is the operative word in that sentence! The cost for the van is $61,500...no, there's no typo there - $61,500...but the GOOD news is that I can take a 10 year loan and only pay $700 a month. Yippe - so glad there's a silver lining there...seriously - do you know what I could do with an extra $700 a month?!? My dad's been researching other options, so we'll see what happens.

I picked up her glasses yesterday, I even bought the strap to keep them around her head - every time I turned around she had them below her nose or stuck in her mouth. That girl! Hopefully she'll get used to wearing them again very soon!

Wednesday, August 4, 2010

Some Updates

Two weeks ago we had Alex's follow-up appointment with the feeding clinic and their team of specialists. Alex weighed 50 pounds and 3 ounces, a 30% increase from her last visit in May. While she is clearly gaining, they weren't as happy with the weight gain as they were at the last appointment. I think I can attribute that to the fact that since she's out of school, her feedings start later in the day so she's not getting as many calories in. Having said that, since we've had the appointment and reassessed her goals, she is now eating 8-12 ounces by mouth each meal, AND - which is a very new, 2-3 ounces of thickened pedisure from her squeeze bottle at every meal. She has made HUGE gains with her squeeze bottle the last two weeks and I just know we are going to be down to only half a tube feeding come her next follow-up appointment in November. It's really a double edge sword for me - while I'm THRILLED she's gaining so much weight and clearly meeting her goals, she's gaining weight - which is just making it harder and harder to carry her throughout the house or to transfer her in and out of the car. I'm hoping to take a ride this Saturday to a car dealership that specializes in lift vans - I truly cannot see lifting her in and out of the car at her weight for much longer...just think - if I want to go to the grocery store and get a gallon of milk it goes like this....lift Alex's 50 pound self from the house to her car seat, lift her 7o pound wheelchair into the van, get to the store, lift the 70 pound wheel chair out of the car, lift her 50 pound self into the wheelchair, shop, get back to the car, load her 50 pound self into the car, lift the 70 pound wheelchair into the car, get home, unload her 50 pound self into the house, unload the 70 pound wheel chair out of the car. If you do the math, that's 480 pounds for a 15 minute trip. On average, between therapy appointments, Dr. appointments, and just general running around town, she's in the car 2- 3 times a day - which would equal 960 or 1,440 pounds lifting - and that's just car time, not to mention all the lifting that is done in the house - I should look like Hercules by now!!!

Moving on, I'm embarrassed to say that we have misplaced Alex's glasses since the end of June - I'm guessing she lost them at school, or on the bus, but the school doesn't have them and there's really no one at the bus transportation that I can check with now that it's summer to see if they have a lost and found. I took her yesterday for her annual check up and I told them that she has not worn her glasses in over two months. They did their normal battery of testing on her and said that while she is significantly farsighted (meaning that she can't really see close up and is not REALLY enjoying all the pictures in her books) that her stigmatism has dropped 25% and her farsightedness has decreased by 10%. She is still significantly farsighted that glasses are required. We have been using pictures for her to make choices with and are in the process of getting an eye gaze communication system for her - but I'm really starting to wonder if when she's being presented with the pictures and she's looking at them, that when she's trying to reach for them her reach is so off because she's not seeing clearly. Her eye gaze and obvious reach for pictures is very new, so I'm anxious to see if, in 7-10 days when her glasses are ready, that that will improve.

Today Alex got a phone call from a boy that is in her 'typical' second grade class inviting her to his birthday party! Last year at the pool this little boy would come up to her frequently and say hello and ask her how she was doing, but we had no idea who he was. I think it's SO AWESOME that he wanted her to be at his birthday party - obviously a very touching moment for us. I'm nervous that there will be about 25-30 kids at the party and how they will all react to her, but from what I can tell, most of them are second graders that went to school with her this year and have experienced her happy yelling or odd quirky behaviors, so I'm hopeful! It was just such and ordinary request that made us feel so happy for her and very happy that she has inclusion classes at her school. Can't wait to see what Saturday brings!!