Tuesday, October 28, 2008
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.
Wednesday, October 22, 2008
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!
Noreen, John & Sean
Zach & Sean
Saturday, October 18, 2008
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...
Tuesday, October 14, 2008
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!
Tuesday, October 7, 2008
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
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!
Thursday, October 2, 2008
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...