3.29.13 Possibilities

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

Aimee playing with Caleb before he was born.

Fear and motherhood invoke such separate pictures to the mind. Yet fear, sneaky and vile, creeps into many beautiful parts of life. In fact, I imagine many mothers, well for that matter many parents, at some point face fear in parenting.

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.

2.26.13 From 3 to 4

Yesterday I was only 3 years old. So young.

This morning I woke up so much older. I could tell it was a special day right away because I got birthday kisses from Daddy.

Caleb gives me cuddles everyday.

Mommy put my hair in braids. It seems like as a 4 year old I would be able to wear my hair however I wanted, but Mommy decided without even asking me.

We had to drive a long way to go to my lessons again yesterday and today, but it's okay cause Mommy and I get to hold hands while we drive.

I got to have lessons with Naomi on my birthday. I like to learn from her.

Mommy and I got the whole day to ourselves. In between lessons, we went searching for the best birthday balloon in all of Bellevue. Mommy made me wear a mask cause she says people have germs that can make me sick.

Even though I had to wear a mask and we had to walk around and around in the cold to so many stores, we finally found it.

Mommy wonders sometimes how I can see anything through my long eyelashes.

After my lessons were over, we got to stop for an ice cream. We shared. I smelled all the bites and Mommy ate them all.

I got some really special presents too. Mommy and Daddy seem especially excited about taking me to see the light show at the Pacific Science Center as my special birthday outing. Sounds like they won't even think about taking me until there are less sick people around. I'm really patient though, so I can wait.

I got to stay up late too. After Caleb went to bed, Mommy, Daddy, and I snuggled together on the couch. They talked about when I was born and prayed for me. I mostly liked the snuggling.

 
I think I will like being 4.

2.20.13 Weight Wake Up

33 pounds.

Numbers can be startling.

We knew Aimee had lost weight, a good amount of weight. Yet, somehow I was shocked yesterday, while we were at her Neurology appointment, when I heard the actual figure. Shocked to realize that 33 pounds meant she had lost nearly a quarter of her weight over the last several months, 8 pounds of that in the last 3 months alone. Taking into account her height, this loss puts her BMI at 12.0, below the 1st percentile for her age.

If I was wary about keeping her away from people and thus sickness before, substantially increase that now. After a sickness is completely gone, she slowly regains a normal feeding schedule. Before she gains any ground other germs find there way in and she is losing more weight to another bout of illness. She seriously cannot afford to get sick again before we pad her up to a healthier weight.

On top of this wake up call, I just learned last week that her reflux medication might actually lower her nutrient absorption. Thus the dilemma. Option 1: Should we attempt natural options for reflux control that will not interfere with nutrients and attempt a slow wean off of this medication? We would hope that better nutrient absorption will help her stay healthier. However, in trying natural options, we will inevitably be using the trial and error method, which means at least a temporary increase in reflux. More reflux means less retained calories, more weight loss, and potential for aspiration/more sickness. Or Option 2: Do we first aggressively work to get her weight up, while protecting her from sickness to our best ability, knowing that her nutrition is partly blocked by this medication all the while?

Neither one seems ideal, but considering how low her weight is, it seems necessary to completely focus on that. Once weight is up to normal (maybe even a pound or two of cushion weight) we could make an attempt at eliminating this medication.

Now, how quickly can one pack pounds on a child? Let operation speed weight gain commence!

Quick neuro note, we are increasing seizure meds again. Aimee has shown a significant increase in seizures when under stress (including sickness) and has developed a new type it seems as well. May have to increase again if we can get her weight up. I am thankful for the medications that help protect her from these worse evils.

2.11.13 The Beginning of Our Story

Looking back I see all the red flags, visibly bright and fluttering in that hindsight mirror. I see the slow process of Aimee's birth and her reluctance to breath the air of this world. I see the constantly sleeping newborn who wasn't able to eat. I see the lack of connection between us and her, the inability to hold herself, and the lack of change. I can even recall the fear in my heart that would not allow me to admit what I saw.

Aimee's story, our first step into parenthood, is not dramatic or shocking like so many other stories are. Instead it is slow, a drip of change and unexpected. The heat was has ever so slightly increased over time and looking back, there was no moment of explosive fire.

When Aimee was born, we were beyond excited. We had so wanted to be parents and had waited longingly for a couple years. We were googley eyed for Aimee and her sleeping cuddles. In our minds, with our heart desire finally met, the hard part was over and she was just right. We reasoned that people always say newborns are very sleepy, so she is just normal. People always say that breastfeeding is hard and you just have to endure, so she is just normal. People say when they are first born their little tummy is the size of a dime, so we gave her dabs of milk and she was just normal.

Aimee was fine 'til we found out at her one week check in with the midwife that she had lost about 2 1/2 pounds since birth. I was sure the problem was my inability, my lack of maternal instinct. We were given 24 hours to feed her as much as possible and see if we could get her weight up 1 pound. Daunting task. We followed orders, purchased a breast pump, and tried every trick in the book to get fluids into the little peanut. By the next afternoon, at 8 days old, we couldn't wake her up. We listened to her heart rate and it had slowed. Her temperature was low. She was very jaundiced. We took her to our local emergency room.

I was so afraid that she would be taken from us, that the hospital would turn us in for not feeding our child. Especially as they said things like starvation induced jaundice. Starvation. I had been starving my own child. I certainly had no mothering abilities.

Poor, orange baby. She was attacked in that ER by nurses and doctors taking spinal taps, trying to get IVs into tiny, extremely dehydrated veins, taking any blood they could get from her for tests. Every time the blood would congeal and be unusable. Aimee never reacted or made a peep. Late that night, she was finally placed in an ambulance and transferred to a better hospital. Upon arrival, the nurses immediately began to attempt blood draws, to repeat all the tests that had been attempted at the first hospital. We were raw. The poor, sweet nurse was eventually in tears too as we begged and pleaded for them not to take any more blood. Please leave her some, especially since each time it was for nothing. What a low moment, yet still we had no clue.

Aimee was there in the NICU for just a week. We pushed hard to have her released as soon as we could. Her weight went up, she was hydrated. We were told to be sure to see a lactation consultant and to get her treated for club feet. Nothing was wrong with our baby, it must just be me.

We had Aimee treated for club feet, which was time consuming. She had new castes placed weekly, her Achilles' tendons cut, and eventually she wore a set of special shoes attached to a bar 23 hours a day. But, this was just superficial. Aimee wasn't developing and we assumed it was due to all this added weight and awkwardness.

We tried everything to keep Aimee fed. I nursed, pumped, bottle fed, and repeated. She gagged, choked, breathed, and somehow managed to survive. It is horrible to recall how frustrated I was with her during that time. If only I had known how hard she was trying, how much she was fighting, I would have been so proud of her. I am so proud of her now.

When Aimee was 6 months old the questions started to pour in from every side. We suddenly had to answer to the big question of why we had ignored all the signs. One doctor asked why Aimee wasn't holding her head up, another saw that her head was very small for her age, and our family started to verbalize to us. This wasn't normal and we had to face the facts that we had ignored all along. A few would state that they had known from the beginning, as if that would somehow help us now. We had to finally admit, Aimee is different.

We took every referral, said yes to every test, talked to every doctor. We were desperate to find out the "what and why". Was it the jaundice and thus the starvation? Was it the slowness to breath after birth? Every question, every test gave us no peace. We found out that Aimee had a very small head that had scarcely grown since birth. We found out that it meant her brain wasn't growing. We found out lots of reasons why that could happen, had all the tests done, and yet none of those things had happened.

At first every doctor was interested and had ideas, but as Aimee grew and every test came back without answers, we were gradually left with no clues. We continued to follow up with the appointments and slowly found more problems, but never an overall cause and never anything we could do to correct the main issue. We eventually found that she should not have been fed orally and she had a feeding tube installed for all nutrition. We found that her hearing was impaired and had aids made. We eventually discovered she had been having seizures since birth and put her on medications. We finally discovered her vision was very limited. We found that she had low muscle tone that keeps her from building strength. We discovered she had sleep apnea and retained carbon dioxide in her blood. We were told that her life will, from a medical percentage stand point, be taken early due to her inability to fight sickness effectively.

And so, there we were left. We had no community to turn to who had experience or at least was dealing with similar issues. In our desperation to aid Aimee, to unlock the box she was trapped in, we threw ourselves and her into rigorous therapies. We continued genetic testing. We followed up on any tiny difference we could find, hoping that some clue would unlock the box. Our days were jammed with appointments, feedings, and exercises. And still Aimee remained mostly the same. She stayed trapped as a very young baby in an ever growing body. She has yet to hold up her head, despite her desire. She rarely makes baby babble. She is unable to track or even see objects and rarely finds the ability to fix on a face.

As she grows, more issues present themselves, issues with aspiration, with sickness, with positioning, with diapering, moving, transportation, and feeding. Our mentality has begun to shift as we no longer focus on what and why. We are beginning to let go of the attempts to push her, recognizing them now as attempts to "fix" her. Although continuing with an alternative therapy that does seem motivating to her, we have let go of our many therapies and exercises. We have simplified to keeping Aimee healthy, helping her discover herself, and allowing ourselves, family, friends, and even to an extent strangers to develop relationship with her as she is.

It seems we will never know the whole story. We must admit and face the limitations. We must help Aimee overcome the challenges that continually arise. Above all we must treasure, learn from, and delight in Aimee for the whole length of her journey.

And that isn't the end of the story for Aimee.