9.30.12 Blood, Phlegm, and Tears

It's getting late, going on 11:30. Ed and Caleb have both been in bed for hours. Aimee and I are spending the hours of the night together on the couch. Just the two of us, the iPad, a fuzzy blanket, and the suction machine. Most nights Aimee does well sleeping on her own in her twin bed at a slight incline. Then there are these types of nights. Ones that include blood, phlegm, and tears. Usually all Aimee's, but admittedly a few of the tears fall from my eyes as well.

We have had several minor illnesses cycle through our little family over the last several weeks. Annoying and tiring for the other three of us, challenging and exhausting for Aimee. A constant battle being waged against aspiration and dehydration.

Yet, I am very thankful as I sit here that I am here, at home, able to care for her myself in middle of her little fights. Thankful that I was chosen to wipe her tears, share her laughs, and her hold her tight. And certainly most thankful that I do not do any of it alone.

9.26.12 TVI update

Wanted to share this great email update I just received from Aimee's Teacher of the visually impaired (TVI) regarding their lesson this morning. It made my day! :D

"Hi Rosa, You have such a fun little girl! Aimee seemed delighted when Kim (Aimee's teacher) told her that she was going to go play with me - she smiled, giggled, and waved arms and legs. The best visual response I had today was to my face - which I think is very cool. She focused on me twice in the "therapy room" and really looked in a concentrated way at my face when I was saying goodbye and that I would see her next week. She also gave me several great responses when I talked to her about you - I had my thumbs in her hands and when I would ask her "Is Mommy going to come back and get you?" She would brighten and squeeze my thumbs really hard. She did this more than once - are you special or what?!!!"

9.25.12 An Issue of Mathmatics

Imagine yourself as a young child standing in front of a blackboard that is covered in complex mathematical equations. You can see the numbers and symbols sprawled across the board, but you do not see any pattern or order. At your age you are just learning to recognize the individual numbers or perhaps count to 10. As you look at the board, you recognize a number or two. Really though, you have just the tiniest bit of understanding of what the markings on the board mean, even though you can see everything on it.

I heard a similar example recently to describe the symptoms of CVI, the vision impairment that Aimee has. Her brain doesn't know how to interpret the information that it gathers through the camera of her eyes. For Aimee, this same scenario applies to not just her vision, but also to her hearing, physical movements, emotions, and communication. She has the parts and pieces, but doesn't have the ability to interpret how they relate to each other.

This understanding of Aimee's obstacles has helped me to come to a big decision. Namely, we will not be going back to traditional therapy. We are currently half way through our trial period with the Anat Baniel Method. No matter what, even if we are not able to continue with these sessions, we will not go back. I have come to realize that asking Aimee to sit up when she does not yet have the ability to hold up her own head is like asking a child who is learning to recognize numbers to add fractions. Balancing her on an exercise ball (one of the exercises done in physical therapy) is like putting her in front of that blackboard and asking her to solve the equations.

One might see the little progress reports that I have been posting as meaningless. Yet, from my perspective, these little steps are like learning that 2 comes after 1 and before 3. That little bit of knowledge is essential if one wants to eventually solve the equations on the blackboard. Aimee's little new movements are all essential to the bigger movements of grasping objects, forming words, expressing feelings, and even seeing faces.

Really, Aimee is brilliant. Despite major obstacles that her brain has, she is learning. Even though the world around her is in many ways like sets of complex equations that she cannot understand, she still works to learn how the pieces relate to each other. She values and delights in each tiny new connection that she learns. After seeing this, how could I ever again ask her to perform a movement before it's time?

Aimee on her first day back to school last week.

Excited for school.

We have noticed a slowing in the amount of new movements that Aimee has made over the past couple of weeks. It is hard to know how much this is due to her surgery, subsequent eye infections, and increase in seizures or even just the added stress of being back in school. We had been warned upon leaving the center in August that we would see regression. We instead have seen continued progress. However, in order to stimulate more progress, we have a trip to the therapy center in California scheduled for the 3rd week in October. We were able to schedule half of the lessons with a therapist who has worked specifically with Cerebral Palsy patients for the past 25 years. Although Aimee does not have Cerebral Palsy specifically, she does share many of the symptoms. Plus, Aimee's therapist that we see in Bellevue twice a week will be down at the center that same week and able to sit in on these lessons. We are really excited!

We have applied and been approved for a partial scholarship for this upcoming trip. We plan to drive down and stay with family on the road as much as possible. By initial calculations, it looks like the lessons, gas, food, and lodging will come to about 3,500. A daunting figure, but we are continuing forward. Please agree with us that the trip would be provided for over this next month.

9.13.12 Seizures are from Hell

Hell, home of terror and death, must also be the native place of seizures. The fear that Aimee experiences during her episodes is so contrary to her peaceful, joyful daily demeanor. She is always trusting and typically radiating joy and calm. When I see her cross over into fear, those Hell bound seizures are usually on hand.

Yesterday was Aimee's tear duct surgery. They probed through her tear ducts in both eyes and placed tiny silicone tubes through the ducts into her nose. These tubes will stay in for about 4 months. Hopefully after removing the tubing, her ducts will remain large enough to drain tears and keep her eyes free from more infections.

The surgery went well. Ed left work to come wait with me at the hospital. Aimee always takes longer than expected to wake up from anesthesia and I get nervous as I wait. True to form, she kept us waiting awhile, but by the time she was back in my arms, she was fairly alert. Then begins the examination. It really frustrates me how we know so little about what happens with her from the time they carry her away to the time when they wheel her back. I search her arms and legs for how many tries it took to get the IV into her. This time I found 3 failed attempts. I wonder about the blood on her arm or the bruising on her cheek. No parent can completely protect their child, but, for now at least, I am Aimee's defender, since she cannot speak for herself.

After we were discharged from the hospital, we went pick up Caleb. He spent the day with my brother and his family. We were so thankful that they gave us a place to rest and fed us dinner. Before we headed home though, Aimee became afraid and began seizing. I can't even completely remember what she sounded like. It seems surreal to remember. She voiced her feelings really loudly. She wasn't crying, just speaking. Her scared proclamations were mingled with seizures and she had 4 clusters of this combination up until I was able to get her to sleep in her own bed last night.

It seems like the fear that she felt from the whole day's experience was finally coming out. Her mind was finally coming out of the groggy anesthetic fog and connecting with the feelings she had inside. Although the positive side of her expression of feeling and her loud voice are definitely wonderful, the awful seizures and the additional fear that they bring, out weigh the other for me. And I just prayed, as every parent must do in those moments when you have no ability to protect your child from the world or in this case from her own brain. I prayed that those seizures would go back to their homeland.

9.10.12 Dancing Babies

Just in case you needed help putting a smile on your face today. :)

9.7.12 Needed: Two Cookies

It has been one of those weeks. Misunderstandings by email with therapists, frustrations with scheduling appointments, meetings with school and teachers, expensive medical equipment not covered by insurance, fussy baby in an unsuccessful hearing exam, feverish Aimee, work stress escalating for Ed, fraudulent credit card transactions, incorrect hospital bill, 3 trips to pharmacy for 1 prescription, more limitations on daily activities, and burnt cookies. I realize eating cookies is not a mature way of dealing with the stress of reaching Friday and feeling like you just can't make yourself lunch. I just needed (well, wanted) two cookies. After everything else, please, just two cookies. Two cookies that are now burnt and smelling up my house. The smell reminding me that I can't even manage two cookies. And no, I don't know what I'm making for dinner. Burnt cookies anyone?

All that being said, there is much to be thankful for this week too. My nieces and brother's family who have helped to watch Caleb during Aimee's lessons twice a week. My sister-in-law and mom who have come over every week to care for Aimee so I can run errands. My niece who bought me Starbucks with her own money during a particularly long day of appointments yesterday. The stranger who opened a door for me that I couldn't get open. The nurse who held Caleb so that I could unpack Aimee's chair for weigh-in. The kind lady at the hospital parking garage who offered to help me. And most of all, my Ed, who has been selfless in the evenings even when he has been stressed and sick.

Aimee is starting school on the 17th again. Although the preschool teacher had originally hoped to have Aimee in class for 4 days a week this year, it is just too much for me right now. At least for this next few months with 2-3 trips to Bellevue/Seattle a week, 2 days a week in class seems much more reasonable. The teacher is on board with the suspension of all in school therapy for now. She even was willing to help me rewrite the IEP (Individual Education Plan) without having to face-to-face confront the team. I have received a few negative emails from different members, but I honestly don't blame them. They have seen success working with their method and they are skeptical of alternative options. Until I started seeing these changes in Aimee, I was skeptical too. BUT, I can't argue with progress! Maybe once they see the differences, they will be more open to it as well.

The only therapist that we have decided to continue working with is Aimee's vision teacher (TVI). She really cares about Aimee and is willing to make the effort to incorporate the basic principles in her sessions that we have applied at home. She was eager to gather more tools for helping Aimee succeed and even agreed to read the book. Aimee will continue to work with her on a weekly basis.

Video from last week shows some of Aimee's new single leg kicks.

More changes we have noticed this past week:
-Lifting her left leg singly and even touching the left foot to the right leg.
-Pulling her upper torso forward in her chair, as if to get out.
-More emotional periods or greater expression of emotions.
-Louder talking, even outside of home.
-More coordinated hand movement.
-Different tongue motions, even mock biting her tongue with it sticking sideways out of her mouth.
-Feeling her hair with both hands on top of head.
-Itching her nose with her right hand flat under her nostrils.
-Pushing her lower back and hips forward while in chair.