Saturday, August 31, 2013

Cerebral Palsy

One of the first things we knew about Afua was that she has Cerebral Palsy. We were not troubled by the diagnosis and we knew that she was perfect just as she was. But once we took her to our first neurologist (I say first because we now have two that follow her) he was not sure if there was another type of neurological disorder going on. We had and MRI and we waited for the results.

Turns out, she does have CP. She had lack of oxygen to her brain either during birth or in utero which caused a part of her brain to be affected. We are following up with neurologist #2 to understand the extent of her injury better. So in some ways I was thankful to know what is going on, but a part of me was so sad that day.

I cried for my little girl and I cried for all that she has been through. I can't understand the magnitude of the rejection and loss she has felt during her first years. I cried for a culture that we love so much that doesn't love our daughter with a disability. I have spent enough time in Ghana to know how people with disabilities are viewed and how limited their opportunities are.

Many therapists that have evaluated her have given us such promise for her mobility and improvement in general. We are starting from the beginning, teaching her the most basic things we would teach our 6-9 month old babies. It's exciting to see her respond to the techniques and all the medical things that are available to her. Right now, sky is the limit and we get to witness her healing as we find more answers.

Tuesday, August 20, 2013

You have your hands full...and other things I don't want to hear

We had 3 blissful days cocooning at home. Afua was done with appointments, over stimulating environments and being poked at by various people. And so was I. We needed a few days off knowing that Friday was our MRI that she needed to be sedated for.

During those quiet days at home, I saw huge progress in our attachment, in her physical abilities and in the way she communicated with us. I got to know Afua better as we moved through the day together. She was all over her siblings, engaged in their playing and scooting around to keep up with them. Precious!

Friday, we got up early, before anyone else was up. We went through admissions and into radiology. As we spoke with various people (admissions, nurses, doctor, child life specialist) the question come out inevitably. Because of our skin colors not matching, people know we are related due to adoption or foster care. I tell our story briefly and it leads to more questions. How many other children do you have at home? Do you have any of you "own" children? Really, you have 5 children? Did you know she had a disability when you adopted her? Wow, how do you do it? And MUST have your hands full. I can barely keep up with my (1,2,3) children. When this starts, I smile and take a deep breath....

Yes, our life is busy, but I think life is always busy. We fill our life with busy things no matter how many children we have. I was busy with 2 children, it was just a different kind of busy. Having 5 children is not crazy or impossible. It's sometimes loud, sometimes stretching all of us, but most of the time it's just a lot of love. And is it really a bad thing to have "full hands"?

Dear medical professionals, random deli counter acquaintances, soccer moms and anyone else that we encounter as we venture out: adoption is a fairly intentional way to add to our family. There is no "oops" adoption, it is pretty much all consuming work emotionally, physically, financially to have a child join our family. So please see it as a blessing as we do :)

Love, Me

Monday, August 19, 2013

My beautiful butterfly

Today, Joy headed back to preschool. She was so excited to pack her lunch, check and re-check her school supplies and she was ready to go well ahead of time. I couldn't help but reflect on the little girl who joined our family 18 months ago. She was quiet, withdrawn, shy and frightened. Today, she skipped from the car to school, hugged her old teachers and headed to her new classroom.

Joy is the perfect name for her. She is full of energy, full of 5 year old girl happiness. She is my beautiful butterfly.

Friday, August 9, 2013

2 weeks home

It will take some time to post my travel journal, 5 weeks worth of thoughts and adventures. But I wanted to give a quick glimpse into our 2 weeks home so far. I have friends who are considering adopting a child with medical needs and maybe this will help to understand how things are going for us.
Afua right before our first flight takes off

Afua was quite sick when she first arrived. Her orphanage did not give us any medications (not sure if she even was on any medications?) and they did not tell us what/how she eats. A child with low muscle tone has usually eating difficulties and we quickly discovered what NOT to do. It was scary to see her refuse to eat, begin to lose weight but we are thankful for quick action from our medical team.

At our final destination: Afua in her stroller and we escorted another little girl to her family

Day after we arrived, we saw our pediatrician. She was able to get us to see a neurologist the next day and he ordered an immediate EEG to monitor any seizure activity. This neurologist has spent time in Africa and was wonderful in giving us further recommendations. The EEG did not show seizures within the hour period of time, but we may go in for a full day monitoring later on.
Our first family picture

Our next stop was a swallow evaluation. We were unsure what food consistency was safe for Afua. We knew she coughed and gagged with certain consistencies. We learned that she cannot swallow liquids safely. We received a referral to a feeding clinic and a nutritionist so we can decide if a feeding tube is needed to supplement her nutritional needs.

After all these appointments the first few days, I was glad to have a day off and just spend time at home. Afua was on an antibiotic for awful ear infections that she had for a long time. Finally, she started eating and feeling better as her ear pain was going away. With that has come energy to play, explore and get to know her siblings.
Practicing reaching with Joy

We are thankful that we have stayed out of the hospital and figured everything out from home. We also have an MRI scheduled soon that will give us more insight into Afua's health. Our neurologist is not quite sure if she has cp or another kind of neurological condition that causes her to have low muscle tone.

Our family is doing well and all children are adjusting to many changes. Friends are bringing meals, which frees up time to bond and play. Afua's personality is emerging. She is quite determined, curious and she loves music. We are keeping her world as small as possible. But with 4 siblings and activities, she has been out of the house a bit more than we'd like. We did take a morning to enjoy nature and she loved listening to birds on the nature trails.

In the short 2 weeks that we have been home, the most overwhelming part has been paperwork. Our children's hospital makes it as painless as possible, but there are still assessment forms to fill out, applications for medicaid, phone call to arrange various appointments and each referral leads to another referral or five. There is so much we don't know about Afua and we are trying to move slowly with things that can wait. And with urgency the things that cannot. I am her advocate in getting the services started and also letting healthcare professionals know what can wait. Because she needs to have a day off at home. It's hard, but she is such a brave little girl with a joyous spirit. I am one blessed Momma.