We had a special opportunity this week to have lessons with a therapist who traveled up from California, where the ABM therapy center is located. Since we weren't sure if we would be making it back down to the center before the baby comes, we were excited. The lessons were AMAZING! Our regular therapist was there video taping the lessons and learning more ideas for going forward with Aimee. The visiting therapist was an incredible resource. She had previously been a traditional physical therapist and is able to take benefit from both types of therapy in her recommendations.
Aimee responded immediately to the new positions and techniques. It was really fun to see her engaged. She was so excited between the lessons and "talking" a lot. A few new things we have seen her do during the week:
-Rocking pelvis front-to-back (she had started wiggling it side-to-side a few months ago)
-Wiggling her rib cage side-to-side
-Moving her head, left leg, and wiggling her hips all at the same time
-More handsy (grasping at hands, tubes, hair, really anything that touches her hands at all)
-Participating in rolling toward the right side during therapy by pulling her head forward
-Able to hold her knees closer to in line with her hips, rather than only holding them out
-Improved ability to move her right leg and plant her right foot
-Also, fun loving girl, laughing every time they show her how to move her pelvis
The most exciting thing that happened during the sessions (to me) was watching her participate in the sitting up process. She looked so cute and it was so heart melting to see how much she wanted to participate that I really hoped to get a video so that I could show you. Unfortunately, by the time I thought to get out my camera, Aimee was really tired. I will get a clip from our therapist who was videoing the whole thing and post it as soon as I can. I think you will really enjoy seeing how the therapy works. It's really stunning.
The visiting therapist was most immediately concerned with helping Aimee straighten out her spine. She is always contracted towards the left with her right side extended. This has caused, among other things, worsening of her scoliosis, difficulty in turning her head toward the right and in orienting herself to things happening to her right, her jaw to pull toward the left, and changes in the shape of her face and skull. The great news is that this therapist has successfully helped kids improve in this area.
She also really encouraged us by saying she can see Aimee learning to push with her feet. Aimee has always loved to kick and with her lessons she may be able to learn to first push herself away from a wall and eventually to move across the floor on her back by pushing with her feet. Exciting possibilities for Aimee to have an independent movement. She LOVES to move.
This morning we got an email from the center down in California letting us know that there are lessons available for Aimee starting one month from today with the founder of this therapy method. We will be praying about it this weekend. We don't have the funds to go and it is only 6 weeks before the baby is due to arrive. On the other hand, we know God can provide the money and it may be easier to travel when the baby is still en route than it will be for the first several months after he comes. Please pray for us to have wisdom.
3.26.13 The Fear of Motherhood
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| Aimee playing with Caleb before he was born. |
Multiple doctors, multiple times have said that it wasn't our fault. Several have specifically said there was nothing we did or didn't do that caused Aimee to be disabled. Most are convinced that Aimee has a genetic condition, more than likely even a genetic mutation. Meaning that the beginning of her story had no influence on her current condition.
We knew we wanted other kids, but we also had an irrational fear that told us we did not have the instincts to be typical parents. I was terrified to have another child, feeling that I had failed Aimee. I felt very judged by other mothers, especially at the beginning, when people seemed to assume we just weren't doing tummy time or giving her the opportunities to learn. I let go of many friendships as others did not understand or were not sensitive. All those other mothers had similar problems to face and would spend all their time chatting together about sleeping, hair pulling, tantrums, screaming, messes, when their kid first walked, talked, or rolled over, ect. Things that seemed trivial to me. All I wanted was for my Aimee to be able to look at me, respond to being held, and remain healthy. I longed for her to ask for food, cuddles, really anything.
Although from this place where I sit now I can see more clearly, at that time I truly believed it was at least a tiny bit my fault. That, at the very least, one should be able to figure out how to feed their own child. Knowing how limited my instincts were, we almost hoped our second child would be disabled. We knew some things now about caring for Aimee and knew we could manage that. However, when Caleb forced his way into the world, participated in birth, immediately demanded attention, and cried for someone to goodness sake feed him, we knew this was not the same.
Caleb was immediately different. He knew how to eat, he could suction, he was awake. His eyes were taking in the world around him immediately. A deep wound in my heart received salve as I began to realize Aimee was limited from moment one. I didn't fail her in my inability to nurse. We didn't fail at encouraging her to develop. Our natural parenting instincts were not absent.
Having Caleb has been astounding. We saw how quickly babies can change and grow. We immediately felt a response and connection from him. We were able to clearly see how different Aimee was and how much we missed out on with her. It has been rewarding, painful, and refreshing. Our view of parenting will be forever altered by our experiences with Aimee. We will never place the high value on pushing to meet developmental milestones. We will find joy in seeing our children make a mess, express themselves, and make choices. Encouraging our children to keep up with other kids has vanished from our values. We are so thankful for each moment.
Speaking for myself, I can say that this past 15 months with Caleb has resolved much of my fear. My insecurities that had told me I could not be a regular mother have slowly vanished. Ever so slowly I find myself able to connect with other moms. The pain is still there, but we can now see it and understand that there is no fault in it. I will always desire for Aimee to be restored, but now I know she isn't this way because of me. I can finally wave goodbye to the fear of motherhood.
3.11.13 The Younger Older Sibling
Caleb, Aimee's brother, is 15 months old today.
He is stunning us daily with his abilities and constantly entertaining us with his silly faces,
singing, dancing, and conversation. We are so very thankful for him.
Caleb especially loves to cuddle with his sissy Aimee.
Even though he is almost 3 years younger, he is already beginning to take on the role of
older sibling toward Aimee. He is protective and wants to participate in her activities.
Seeing him love on her is a huge blessing!
He enjoys playing with her.
He loves to lay with her and read books.
He tries to help with her routines.
For example, throughout the day we stretch Aimee's legs, arms, and spine. He tries to help her do stretches and even makes the accompanying stretching noise we make.
He gives her toys to play with and helps her play her
vision app on the iPad.
He is even learning to help guide her hand to do it herself.
He has begun to move her around the house like we do when we are moving to a different room.
In these photos, he moved her from the kitchen to the doorway
of our bedroom when he went there to play.
He has learned to unlock the wheels of her chair to push her across the room.
He even wants to hold her on his lap.
Although he is still learning that rough play isn't an option, we are so proud
of Caleb as he is beginning to assume the role of older brother to his older sister.
3.9.13 Vibrant
After nearly four weeks of no sickness and two weeks of positive weight gain, Aimee has come to life. Her eyes are radiant and shining. She is energetic and responsive. She is happy and beginning to make noises again. We had gotten so used to her being sick, we had begun to forget what healthy Aimee is like. Protecting her has made an incredible difference!
While we are blissfully happy with the changes, we don't know for sure what it means going forward. We are weighing the cost of exposures with the benefit of outside relationships. Keeping her away from everyone is effective, but also sad.
In other happy news, after last week's ABM lessons, Aimee has raised her right arm straight out from her body 4 times. We rarely see progress in her arms so this is a big deal! She also continues to do some fun foot and leg positioning.
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