DeVoe Family: March 2012

3.30.12

First things first, let me tell you the magical event of the week. Aimee hugged me. This, of course, was not a random occurrence at all. I have been working with Aimee the last couple of months trying to teach her to hug me. We have been working on her shoulder strength in Occupational Therapy with arm braces. We do exercises every day and she has begun to occasionally lift her arms to the sides. It seemed like the perfect time to teach her about hugging. Several times a day, I hold her and wrap her arms around my shoulders. I say, "One, two, three, HUG!" and squeeze her tight. Wednesday morning I picked her up to carry her to the car and she slowly, haltingly lifted her arms over my shoulders and gave a miniscule squeeze. Let me tell you, it didn't feel miniscule to my happy heart!

We had a sedated BAER exam for Aimee's hearing this week. Monday Aimee, Caleb, Nana Annette, and I went down for the per-proceedure appointments to okay her for the exam. We met with Anesthesia and with Otolaryngology. They approved going forward with the schedule.
Wednesday morning, after a great therapy appointment, the kids and I picked up Ed from work and headed to the hospital for the exam. Aimee was in a great mood that day, so great she was laughing in the waiting room. She was even laughing as we put on her hospital gown and prepared her to go under anesthesia. I took a short video to prove it. She clearly is an old hat at these procedures!!

Ed and I have made it a rule that he always accompany me when we do any sedated tests. After the time it took Aimee an extra 24 hours to wake up, I get really nervous waiting, knowing that she is currently under. She usually takes extra time to come out of it and even though I know this ahead of time and logically know it is okay...I still get freaked. She actually did really well this time. The test went on for about 2 hours and by 3 hours I was getting her dressed and ready to head home! Pretty amazing. The only negative was that she looked pretty beat up. She was really yellow, had puffy and purple eyes from them taping her eyes shut (routine during anesthesia), and had several pokes from where they had attempted to get her IV into her. It looks like it took them 4 tries, although I'm not sure if some of those were for the genetic blood test they were also drawing or if they were all for the IV. One thing that I wish they would tell me upon discharge, not leave me to discover later.

So the test results came back the same as they had previously. She has mild to moderate hearing loss. We will repeat this test every 18 months partly to ensure that her hearing aids are set correctly, but also to see if there are any additional clues for her overall condition.

While in Otolaryngology on Monday, we were also encouraged to have Caleb do a BAER exam. He passed his newborn hearing screening, but since Aimee also passed hers, it seems like we should take a more thorough look. Apparently if we get him in for the exam before 6 months, he will not have to be sedated. However, when we talked to the Audiologist about it, she said that it still takes the same amount of time and he will need to be napping through it. Ha! He hardly naps as it is, I can't imagine him sleeping through any probing!!!

New thoughts on that rash that Aimee had last week. Her eyes have been red, full of puss, and swollen quite a bit. She has been choking more than usual too. I am seriously wondering if she has seasonal allergies. I'm not sure if I should pursue this or leave it alone. The days that she had those symptoms, she also spent her evenings miserable and crying. This alone makes me wonder if I should talk to her Naturopath about solutions.

3.25.12

Now seems as good a time as any to post about this past week. Now as I sit here holding my crying Aimee. There isn't much I can do to help her feel better, for one because I have no idea what is wrong. Some nights she just cries. It breaks my heart when the giant tears roll down her face. I just hold her, sing to her, and wait for the sadness to pass.
We had an unusual bout of events this week at home. It started on Tuesday night when I was carefully moving Aimee out of her chair to sit with me on the couch while she finished her dinner. To my great horror, the tube caught somewhere along the way and the button in her stomach popped out. What an awful moment as I realized what had happened. There I see the little balloon, which should be safe inside of her, dangling at the end of the feeding tube with blenderized food just dripping out steadily. Oh boy did I feel sick. Thankfully Ed was home with me and he very calmly cleaned up the button as I cleaned spilled food and blood off of Aimee. We were able to replace it fairly quickly.
After a nervous night of watching and listening for any problems, I woke Aimee up to find her abdomen covered with tiny raised dots. A rash on her stomach. The main concern I had was that it could be a side effect of one of her seizure medications. We were very specifically told that if we ever saw a rash on her stomach to immediately call neurology as it could be a dangerous syndrome developing. After talking with a nurse, we decided to take her in to the doctor for a check-in. It didn't seem to be spreading and after this appointment the doctors decided to have us just put her on Benadryl and watch her for 24 hours to be sure there was no negative changes. The rash seemed a bit better in the morning and now it is almost gone. Looking back on it, it seems that the rash had to be one of two things, a strangely timed eczema issue or rash caused by the shock of her button being pulled out.
The most frustrating part of this whole process was how high energy Aimee has been through it. Of course this is a good thing that she is happy and hyper, but the frustration is that we did not use the BiPAP machine during the last several nights, because she was on Benadryl. So somehow no machine and medication is more affective than the machine whose purpose is to help her get good sleep. Big, big sigh!

3.22.12

Aimee loves playing with her new penguin that Grandma Starla gave her for her birthday. As an added bonus, Caleb loves watching Aimee play with it! Two kids with one penguin. :)

Enjoying Holland 3.20.12

One more thing to share. I just read this little blurb on another mother's blog and it really clicked for me and the experiences we go through with Aimee.

WELCOME TO HOLLAND written by Emily Perl Kingsley in 1987

When you’re going to have a baby, it’s like planning a fabulous vacation trip to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum, the Sistine Chapel, Gondolas. You may learn some handy phrases in Italian. It’s all very exciting. After several months of eager anticipation, the day finally arrives. You pack your bags and off you go.

Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland!” “Holland?” you say. “What do you mean, Holland? I signed up for Italy. I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.” But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place full of pestilence, famine, and disease. It’s just a different place. So, you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It’s just a different place.

It’s slower paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around. You begin to notice that Holland has windmills. Holland has tulips. And Holland even has Rembrandts. But everyone you know is busy coming and going from Italy, and they’re all bragging about what a wonderful time they had there. And for the rest of your life you will say, “Yes, that’s where I was supposed to go. That’s what I had planned.” And the pain of that experience will never, ever, ever, go away. The loss of that dream is a very significant loss.

But if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.

3.20.12

Oh the ups and downs of therapy!
The last time I posted I was feeling really excited about the school therapists' ideas and the fact that they were finally on board with Aimee. Now here I sit on the other end of the excitement spectrum. Of the 4 types of in school therapy that Aimee is receiving, 3 of the therapists are working with her as a group. The first time that they came, I wasn't informed of the time they would be there. When I came to pick Aimee up from school, what I heard was a bit disturbing. They had tried to put her in a modified stander on her stomach, but she isn't strong enough to keep her neck extended, so she fell forward into the bar and was choking. She had a sad red mark on her throat to prove it too. :(

The second time I made sure that I was there with her. We came in to the school before class at the designated time, but they weren't at all ready for her. They spent over an hour trying to hook up equipment, replacing batteries, moving tables, ect. Aimee was so overwhelmed that she completely blocked them out. When they were finished setting up, they seemed surprised that she wouldn't wake up to work. Sigh. Maybe in school therapy won't be so effective after all.

The one neat thing that the school has provided is a button that attaches to the headrest of her chair. When she pushes the button by leaning her head to the right it activates a musical butterfly. The above video is of her excitedly playing with this toy.

Aimee and her cousin, Kenzie, playing in the balloon fort.

Remember how we lost our funding through DDD to continue with her out of school therapy sessions? Well, we were able to have her evaluated and put through a referral from her Neurodevelopmental doctor to continue therapy sessions. So far, our insurance approved her for 7 OT visits to be completed by April 30th. On one hand this is great news, because we can continue working with Shaun, the therapist that Aimee has made real progress with this last couple years. The only little problem is that in this short of a period of time we need to show significant progress in order to have more sessions approved. :/ Aimee has definitely made huge progress this past year, but I'm not even sure the amount she has done in that time would be enough to satisfy them.

Aimee and baby Caleb

I took Aimee in for her 3 year well child check up with the Naturopath a couple weeks ago. We really love this doctor as he has seen Aimee since she was a small baby and has helped us through so many challenges. Aimee has grown by leaps and bounds this year (except for her head) and overall has been pretty healthy too. The only followup issue we came out of the appointment with was her lazy eye. Aimee has just started to track a few objects past midline in a very controlled environment, but when she does the right eye continues to follow the object for a moment and the left eye wanders back the other way. I am going to take her back down to the Ophthalmologist soon to discuss this with them. The danger if this continues to happen is that her vision will be blurry and her brain will actually shut off the wandering eye to preserve clarity. We certainly don't want Aimee to miss out on any more sensory input!

We have been having quite a bit of trouble getting Aimee adjusted to the new pressure and mask on the BiPap machine. Last night she only wore it for one hour. I finally took it off because the poor sweetie was just sobbing. Breaks my heart. We had such high hopes that it would increase her energy levels, helping her to be more awake during the day. So far it seems to have had the opposite result. I'm nervous that when I take her in for the follow up appointment with Pulmonary next month they will find an improvement in her blood carbon dioxide levels and insist that we continue using the machine despite the negative impacts that we see.