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.

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