The most powerful word

Sharing a post from last year that still applies to my life today....


Afua doesn't walk....yet

Afua isn't communicating with signs....yet

Afua is not drinking from a cup....yet

I find myself  using these phrases at doctor's appointments, school meetings, discussions with friends or relatives. I can't seem to say the first part, without adding the word yet. I wonder if my yet is viewed as a mom who is unhappy with the way things are or if they will truly understand my feelings behind using the word yet. 

 Right now, the word "yet" gives us power to hope for Afua's future. It gives us permission to say that we know more miracles are around the corner. That the hours she works so hard in therapy each week are for a purpose. And we hope that she will get to experience new things as a result of that hard work. 

Yet, if nothing changes, if nothing improves, if life tomorrow is exactly as the days before, she is loved just the same. Her performance is not a measure of her worth. 

So I guess this is really the heart of parenting a child with special needs. We live in the moment, we hope for the future and we constantly worry that our moments with our kids are cut short. Balancing all these feelings is 90% of my journey.

Cochlear Implant Surgery

After our failed attempt at cochlear implant surgery in August, we consulted a new surgeon at a different children's hospital. It felt right to get a fresh start after so many glitches occurred at our first one. Our new surgeon has completed 1200 cochlear implant surgeries and the office staff was helpful and experienced.

After our hospitalization earlier in the month, I feared our October 20th surgery would be postponed, but we received all clearances in time to move forward. Afua was healthy, her strength was returning and we felt an overwhelming peace about the decision.

enjoying some pre-surgery snuggles

On October 20th, we woke up early and made our way to the hospital. While I didn't want her to have a yet another surgery, this held much promise. 

happily waiting

Everything went smoothly and her implant was tested under anesthesia. It worked well which was a relief. We received our suitcase of technology and a brief explanation by the hospital audiologist.

Before long, Afua woke up and we went home. She was very nauseous the first day but the second day she was comfortable. We stayed home from school the rest of the week and she will return to school on Monday.

a get well bear got her smiling

snuggles

we named him "the most expensive stuffed animal that includes a cochlear implant as a bonus gift"

Our activation will be November 21st and I am not sure what her reaction will be. Afua has had profound hearing loss in her left ear and severe hearing loss in her right ear since birth. She can hear some sounds from her right ear but she has never heard speaking (at least not clearly). This may be frightening or this may be exciting to her. Knowing Afua, she will display her usual determination to figure it out.

 Will she be able to speak in the future? We don't know, but we sure can dream. 

What an October

This month has been different than I ever imagined. Instead of pumpkins and apple orchards, it's been hospitals and surgeries. But that's the way life goes sometimes, especially when you parent a child with medical or special needs.

A few weeks ago, Afua began to have staring spells and we suspected focal seizures. Teachers and therapists all saw them and we made an appointment with our neurologist. they couldn't get us in for 10 days so we waited and documented the seizures.

cutie pie always ready for road trips

Before we could get to that appointment, we had to be rushed to the ER and admitted to the hospital. She was having a hard time, we just didn't know with what....

EEG leads were in and we waited for results

Within an hour, the EEG picked up seizure activity and medication was started.

At the hospital we discovered that Afua had been bleeding in her stomach for weeks and this imbalance was bringing forth the seizures. We were in good hands and a quick procedure was performed under anesthesia. 

most of the days her eyes were closed, this morning i was able to see her eyes

Once we were home, I was sure our cochlear implant surgery would be canceled, but our surgeon was comfortable with us going ahead. Flu season was approaching and the surgery needed to happen before then. We had two weeks of blissful happiness at home before the surgery.

within a day at home, she was happy again

snuggles with daddy

Today, we are home after a successful cochlear implant surgery and Afua is recovering well. In the coming days, I will tell you all about it.

Parenting a child with special needs is unpredictable. I am grateful for the timing of all of this though, we absolutely needed to know about Afua's bleeding before we had the cochlearn implant surgery. Now that it's diagnosed and under control, she is more comfortable and happier than she had been in weeks, even months. 

The sibling of a child who has special needs

We adopted Afua 14 months ago and she is our first child with a visible disability. I often think how our life has changed in the last year, the good and the challenging. Medical equipment, considering wheelchair accessibility of various places, appointments and surgeries have all become a frequent part of our every day life. Our four older kids have gone through the changes along with us and I have worried if they would resent their little sister or our decision to adopt her.

Jake is my compassionate kid and it was no surprise that he became a caring big brother to Afua. Her smile is all he needs to be happy.They have developed a special bond.

Sometimes people assume he is the child most affected by our adoptions. After all, he was the baby of the family and now he finds himself as the second oldest out of 5. Sure, I can't be a room mom at school or come to every class party. I may be at therapy appointments or hospital more than he likes. There are sacrifices that all of us have made to make room for more children in our family. It happens in biological families too as a new baby arrives. But the changes in Jake over the last year have been so evident and I think he is growing into a wonderful young man.

Afua's bus comes first each morning and he comes outside to spend time with her. They play basketball together (she passes the ball and he scores but he always high fives her for a great assist). Last year, when they were in the same school building, he would stop and give her a hug and kiss several times a day. He doesn't have to do any of this, but this is how he wants to spend his time.

I grew up with a younger brother who was hospitalized for weeks at a time. I know how that breaks the familiar family routine, causes parents to be preoccupied and everyone to be worried. I also know the other side, the side that shaped me to choose a helping profession, to care about the people who have a disability, who are different and who are the outcast. I learned to be patient with people who take longer to communicate and I knew the value of friendships with everyone. Jake has learned that at the age of 9. Many adults have not.

After his first day of school this year, Jake excitedly told me that his classroom is across the hall from the "children who are like my sister" (his words). He spent his recess with two students who use wheelchairs and told them he has a sister who uses a wheelchair too. No hesitation, just pure acceptance.  While he has always been a compassionate child, he now knew how to interact with a non-verbal peer and undoubtedly he is teaching his classmates about that too.

Having a child who has a disability can be seen as a tragedy and a burden.  Those unfamiliar with our life can feel sorry for Jake (or our other children). They may feel sorry for Afua because of all that she's been through. But in their pity, they fail to see the beautiful and there is so much beautiful. There is nothing more tender than a little boy's sweet good morning song to his sister. Or the way her face lights up as she sees him returning from school. And while there is so much hard and sad and worry there is the other side too. A little boy who is learning about life right in our home. And his sister, who the world thinks can't contribute much, is the ultimate teacher to all of us.

Finding our routine

A new school year has started and this time I really struggled to find our fall routine. We have a junior in high school who goes on college campus 3 mornings a week (and does not drive yet).

We have a 4th grader who moved to a new building and leaves a bit earlier.

We have a 3rd grader whose schedule did not change.

We have a Kindergartner who is taking the school bus for the first time with her big brother.

And we also have our preschooler who goes all day 4 days a week, does not need a nap anymore and who lost her first tooth this week.

We have spent the past few weeks in open houses, phase in days, orientations and new routines. All the children come home in waves, each excited to share what they learned and spilling their folders all over the dining room table. I returned to work and took on additional students this year, which is challenging but so inspiring. I work in charter schools in urban areas and I compare their learning environments to my children's schools in the suburbs. It is not even close to being an equal situation. I could write so much about that, but for now, I will do my best to connect with each little one I come in contact with.

So life now consists of busy weeks, therapies and appointments starting and of course Friday night football games. Soccer games are happening and we are seeing such incredible character development from my competitive son. Most days I collapse on the couch from exhaustion and I dream of a respite that actually feels like respite. Or sleeping in past 7am. Life is so busy but so so good.

School preparations

With 5 kids, school preparations have to start early. This year, I will have a junior in HS who is taking college classes part time on campus. I will also have a 4th, 3rd, kindergartener and an all day preschooler.

I've especially thought about Afua and how to make a smooth transition for her this year. She will have the same teacher as last year, but new classmates. Her class also interacts with another half day preschool class and they do things like show and tell together. So here are some ways I give my non-verbal child a voice:

1. Photobook

Source

I made a small photobook about our summer adventures. It will go with her to school and can stay there a few weeks as she meets new therapists or support staff. It can also help break down barriers with other students who can see pictures of our Disney World trip, swimming, blowing bubbles or playing with siblings.


2. Make the medical stuff look like non-medical stuff

Source

 

 

Afua has a wheelchair, leg braces, a new body suit (that is great, btw) and many other outward signs that she is different. But when possible, I try to get her non-medical looking things that still do a great job. Like these shoes by Plae, that are great with AFOs but are regular looking shoes. Or sometimes a shirt with a familiar character sparks a conversation with another child. Kids are naturally curious and that is fine. My focus is on the things we can make look more typical and we love pink sparkly things here anyway:)

3. Communication

We have expanded Afua's sign language over the summer. I want her teacher and aide to know all her signs and there a few different ways we could do that. Some families take a chart like above and circle the signs their child knows in one color and the ones they can sign in another. As new signs are mastered, more can be circled.

I have been taking pictures of Afua's signs since hers are modified signs and at times look different. I hope to make a little book out of it since we will be using modified ASL as her primary communication.

4. Safety

I have many safety items on my Pinterest page. Medical alert necklaces, wrist bands or tattoos are all necessary tools for a non-verbal kiddo. yes, our school has all her information but in a medical emergency. I want things to be accessible. Especially after our cochlear implant surgery, Afua cannot have MRIs done without removing the magnet that is implanted. I have ordered a few different options that we will try over the first couple of weeks.


I would love to hear from other caregivers of kids who are non-verbal: what do you do to prepare you kiddos for school?

The surgery that almost wasn't

We are just a couple of days away from Afua's cochlear implant surgery. The last several months have been surgery and sedation free. Our days have been filled with therapies and new equipment, but relatively speaking we have enjoyed a normal, even lazy summer. Now it's time to switch gears as we know the next week will be different in a nervous/exciting way.

We stayed home last Sunday to avoid germs at church and watched a live streaming of the service.

Last week, we had a call that started a bit of craziness. Our Dr wanted to change the surgery date to accommodate another emergency procedure. I tried to come up with a plan how I could reschedule a bunch of appointments, FMLA leave for hubby, childcare etc. Ultimately it was not needed but boy did it get me worried.

Then, last Friday, I received another phone call: our insurance denied the surgery at the last minute after finding a convenient loophole in our policy. I cried....and that's all I can say about that nicely. It was devastating. Crushing. Awful. Terrible. Insurance runs so much of our life already. They decide what equipment we can have, what doctors we see, what medications we use. They tell us how many therapy sessions she needs without ever having met her. And now they were going to tell us Afua could not have a chance of hearing? Ugh. Good thing Eric was home and he went into "hero mode" and I could curl up on our couch and cry. 

Jake and Afua watching tv and holding hands...inside her new ballpit:)

The weekend had us praying for a favorable outcome. Our last hope was our secondary insurance policy that normally just helps us with co-pays and such. We requested that they would take the role of our primary insurance. Within a day (today), they agreed to cover the procedure, the implant and the follow up care!!! An answered prayer for sure.

At the county fair: peekaboo with a chicken

Many children are hearing impaired and they do not wish to have a cochlear implant. Sign language is a wonderful communication method and as you can watch in this Nick News documentary, different families arrive at different decisions. Some children wish to have it but the cost is prohibitive and that is sad for those who truly feel this option is for them.  Afua NEEDS this. She can't sign effectively because  CP affects her hands. She can't use most other communication devices because they require a person to hear. She is so aware of the world around her, we see her make connections about our life all the time. So we are relieved we get to at least try giving her access to speech sounds and enhance her ability to communicate with us. Our expectations are realistic and cautiously we dream new dreams for her.

And....we got to meet Mandisa!!! She was so awesome with the kiddos.

Would you please pray for us this week as we prepare for surgery and after care? Specifically that she would be able to come home the same day and that she would have a smooth recovery? For Mommy and Daddy's hearts as handing our sweet girl to medical professionals is always a bit unnerving? For the siblings as they also are a bit anxious about all of this? Thank you friends!

The getaway guilt

I have been in lots of phases of parenting over the years: the first newborn baby stage, the screaming toddler stage, the separation anxiety stage, the multiple kids stage, the I just moved away from family and don't know anyone stage, the newly adopted child stage, the kid with trauma behavior stage and the special needs parent stage. Yes, there have been many other phases in between, but one thing these phases have in common is that there is little to no chance for alone time or opportunity to enjoy a getaway with a spouse.  The other days and weeks, we could call a babysitter, grandma or a sibling to watch the kids or (gasp) even have them overnight when we needed alone time or couples time.  I remember being so bored one weekend circa 2001 when Emmi was at grandparents house, that I organized my closets. That makes me laugh today as putting away folded laundry makes me feel worthy of an award.

Looking through my Facebook newsfeed, I see posts reminding me that in order to be a great parent, I have to have "me time". Or date nights with hubby. Or take weekend trips alone. Or....fill in the blank. All those things are wonderful. Finding time to recharge is great. Time alone with a spouse is essential for a thriving marriage. There is nothing wrong with those things....when you are in a parenting phase that allows it.

But what if at a particular phase of parenting none of those things are even remotely possible?

What if one parent needs to stay home for the sake of children with attachment challenges or special needs?

What if you relocate away from family and there isn't a person you trust to care for your kids? 

What if your respite care provider was a no show the last three times and you are too stinkin' busy to start interviewing new ones? (I mean, it COULD happen. Or already happened. To me. In May. And now it's August.) 

Then what?

Then those articles and reminders of self care can be reeeeally counterproductive. They feed into the guilt that is already there.  Because aren't we aware of that already? Don't we know that time with our spouse or with girlfriends or alone will help us recharge? In some basic level, we know what we need even when we aren't doing it. 

But for many of us, we are in a phase where our children's needs override the needs of a parent.   There is no other choice. We know, time spent now, will allow for secure attachment later and more opportunities to resume a more normal life. Or we will eventually figure out a safe respite care provider for a non-verbal child, but now the process is overwhelming. Or we can spend time with our spouse at home, because this is a phase. A temporary phase that doesn't need a guilt trip from others. Because those who post and write the articles and opinions are rarely the ones who offer to help. 

There is more to marriage than this, but we do have more fun together than apart :)

This post is not a "how to" but an "I know". I am there, in that phase where a trip to Target is the getaway. Where you look at your spouse at the end of the day and know this hectic pace of life is temporary. You know it's a phase and one day the kids are gone and you WILL miss this. And your spouse will be there and you will take up knitting and you know it was worth it. This phase isn't the end of your marriage. This phase won't squash your self image or sense of worth. 

If you are in that "non getaway phase" with me, let's both get rid of that guilt. Let's embrace the phase and find the joy that is in the midst if it. We are where we are supposed to be. Temporarily. We may need to scroll past those articles and we may need to extend grace to friends who insist that our marriage will end if we don't do XYZ every week/month/year. And then....let's interview a few respite caregivers ;)

Vacation Pics

We have been back from our trip to Disney world for some time now. I have most of the blog posts ready to go, but I thought I'd share a few pictures from the trip.

We saw many of our favorite characters, Mulan was one we HAD to see.

And there's the collection of goofy ride pictures. Em knew exactly where they take the picture on space mountain, so we have some hilarious ones from that ride. THIS is why the Memory Maker was a great investment.

There were moments of contemplation and exhaustion. It was hot but we found some great ways to stay cool.

And this was the highlight for my youngest two.


It was a great trip, we drove lots to get there, we saw more than we thought we could and we made memories that will last us a lifetime. Stay tuned for more...

Discovering sensory needs

Afua spent half of her life (thus far) in an orphanage that left her alone  in a crib majority of her days. Children in orphanages like Afua's are often sensory deprived and learn to resort to other behaviors such as rocking, head banging or various self harming strategies to feel something. In an environment where there is no stimulation (white walls, only a crib to explore, no toys and very little human contact, some children also give up and close off the world entirely. Neither reaction is good for a child's development as children are meant to be held and nurtured, not left alone in cribs.

girls rocking in our big hammock

Imagine coming from this dull but predictable world into our world. Bright colors, freedom to move, textures, tastes (not just bland porridge), smells and sounds. How about interaction with people who want to hug you, touch you and take care of you? For many if not most children this is incredibly hard. It is overwhelming. Many adoptive moms try to figure this out with medical professionals even though their child may be the first time they have treated a chil adopted out of an institution. It takes a willing learner to walk this journey with a family and it takes a a lot of trial and error to see results.

Without discussing Afua's specific challenges, I can say that she needed sensory integration work from day 1. She loved being hugged and held which was wonderful, but our world was so overwhelming at first that she was happiest when we placed her in the crib for naps and at bedtime. I could see how she relaxed in that environment the best.

Siblings love to help her with brushing

I have worked with children with sensory processing challenges, autism and CP. Sensory work is not new to me. But I still sought out a pediatric OT who has been instrumental in discovering Afua's sensory needs. It's great to have someone as the practitioner and I can be the parent.

I shared in a previous post that Afua is getting a DMO suit. It's coming next week!!! It will be a huge help in mobility and sensory processing as well.

This tiny rocking chair is great for organizing and for core strengthening as well

One of the ways Afua organizes is with the Wilbarger brushing protocol. Using a special brush, we go through her legs and arms and trunk in specific patterns and it calms her sensory seeking needs immediately. This morning, she crawled to the table, picked up the brush and handed it to Joy. She is developing awareness on what she likes and what helps her. 

Another way Afua reorganizes is through her mouth. She is always exploring her world by putting things in her mouth and after some specific sensory work with a vibrating tool or the Nuk brush, she is ready to focus on other things.

We have also found that swinging is great for her. Our hammock is a great place to swing and she can snuggle with a sibling or parent at the same time. I am looking at getting a swing in our play room too to help her. 

Pinterest is full of sensory ideas and some activities are great for ALL children. Awareness of sensory integration is growing and it's value is known now. Discovering a child's particular sensory triggers and calming techniques will take time, especially if a child was in a sensory depriving environment. But it is a worthwhile discovery that results in improved attention and social interactions. We get to see the true Afua, not the behaviors that masked her sweet and spunky personality.

Green light

This week, we had our final consultation before Afua's cochlear implant surgery. I had my questions memorized and went through them one by one. We talked about recovery, future MRIs (the magnet needs to be removed or specially covered to have an MRI) and what the follow up therapies will be like. 

Her surgery will be next month so we have a few weeks of summer to enjoy. After that, she will be recovering and then her CI will be activated. 

We have big dreams for Afua and feel that this is the best decision for her. At the same time, we know this doesn't cure her hearing loss, she is perfect the way she is and we will continue to teach her sign language. 

Decisions like these aren't easy, but once we have peace about what to do, we move ahead with excitement. 

A year ago

Edited to add: I have received emails asking if there were any ethical concerns with our adoption based on this day's events. To clarify, the US Embassy did not suspect that we submitted fraudulent documents. Ultimately all our documents were verified as authentic and we were closely involved in obtaining them. But there had been cases before us with falsified documents and that is why there is an increased concerns with certain adoption professionals. 

365 days ago, I was in Ghana waking up before the sunrise. It was the day of our visa exit interview and by all indications it should have been a day of celebration. Afua had her passport, we had jumped though all the right hoops and all we needed was her visa printed on the passport.

I approached her orphanage with my friend who drove me there. The staff was not in the office so we waited for our power of attorney (POA) to arrive. Once he arrived, he called for someone to get Afua dressed. I had to fill out paperwork promising to bring her back and they sent an auntie with us (as a security guard I guess). I was running out of grace with the orphanage and the way they treated me, but I put on a happy face and scooped my girl up.

Afua sitting with our dear friend

We got to the US Embassy gate and the line wrapped around the building. Along with hearing adoptive cases, this day they also had visa interviews for Ghanaians hoping to come to the US for various reasons. The problem was that I was holding a 30 lb sick child who couldn't as much as hold her head up and the line was going to be looooong. 

I was told I could give money to the security guard to use his chair but I gave my POA a glance that indicated that I would rather stand than pay a bribe. Sorry, the Finnish stubborn side of me rose up as I saw a healthy security guard sit in his plastic chair as he watched me carry and hold a sick girl right next to him....grace...grace...I kept telling myself that over and over again.

Finally another security guard approached me and asked me why I was there. He let me in the Embassy so we could sit. My arms were numb and shaking and I'm not sure how much longer I could have held her. 

Once inside, we dropped off documents at the window for our visa exit interview. I was not aware but our POA submitted a document I had not seen before which would prove to cause a lot of confusion for our case.

As we sat and waited, Afua became increasingly distressed. The auntie sent by the orphanage couldn't tell me anything as she didn't usually care for her. Before long, Afua vomited all over herself, my dress and the chair next to us. The crowded sitting room cleared around us, no one wanted to ruin their clothes:) I don't blame them.

Finally I heard my name called. By the time I approached the window, my POA was already there. They seemed to have a spirited discussion about a previous case and finally the attention turned to me and Afua.

The embassy wanted to verify all documents in our case as there had been fraudulent documents presented previously. Also, the one document our POA submitted had a different age for Afua which raised additional concerns. It was this inattention to detail that was now causing a wait in our case. 

I was devastated to hear that we were not getting a visa that day but we would have to wait until the embassy would call me with their decision. They knew Afua was sick (they could see it as she seized in front of them) and it seemed they would proceed quickly.

365 days ago was a day that ended in many tears. Friends called, texted and messaged encouraging words and truths. Eric and I made long term plans for me to stay in Ghana. And once again, I returned my girl to the orphanage where she would lay in her crib. 

But the story doesn't end here...however devastating that day was, there was a happy ending. You can read about our last days in Ghana HERE...

Casting and fitting

Yesterday, Afua had her feet casted for new leg braces. So far, she has worn braces that were designed to stretch her heel cords to a neutral position for standing. 6 months later, she is now ready for more conventional braces that can be worn with shoes. 

We also had a fitting for a custom dynamic movement orthosis (DMO) that will support her core as she learns new movement patterns. It also supports her in sitting and standing which will be a huge help. 

Here is a great video to see what the suit looks like and how it helps children: http://youtu.be/kdDSU-sYo00

The process to be approved for equipment is a test of endurance but our persistence paid off. In a few weeks Afua will have new opportunities for movement (and cute shoes covering her toes!). 

Preparations for our Disney Trip

This summer, we are taking a trip to Disney  World in Florida. Driving many hours, the heat, 5 children, the overstimulation and the $$$$$, it hardly seems like a relaxing vacation. But there are so many other reasons why we want this trip for our family. And we have found many ways to cut down cost (might be another blog post).

Our primary reason for choosing Disney is because of the way they handle children with disabilities. Afua's wheelchair is welcomed everywhere, there are so many things she can participate in and be part of the beauty of Disney. After her eye surgery, she can now see well and I can only imagine how wonderful fireworks will be to her.

We also know there is a window of time that Disney feels "real". Our three youngest children had things happen to them that took away from their childhood. If we can give them a week where they are just kids in a imagination rich place, then it's worth every penny. For my girls to dress in fancy dresses and my boys to battle Darth Vader, no other place will provide quite the same experience. 

It's a lot of planning, a lot of learning and at times overwhelming to plan a vacation at the Happiest Place on Earth. But we found a travel agent specializing in families who have a lived one with a disability. She walked us through obtaining a handicap accessible room, how to navigate the parks and locating all the facilities we will need to take care of any medical needs we may have.

I hope to write more as we experience Disney World through Afua's eyes. It will be fun!!!!

Family Photo Session

After months of medical stuff and a long cold winter, I was finally ready to have our family picture taken. Since we don't do this often, I knew I wanted to find someone special to capture the various personalities in our family. With Afua using a wheelchair, we needed a spot that was accessible. With our various skin tones, the lighting needed to feature all children equally. And the person needed to have the patience to keep up with our energy, melt downs and mealtimes. Tall order, I know.

I found the perfect person for the task, but as we approached our location, it was 48 degrees and raining. Our photographer suggested an indoor location and we went with it. The result? Great pictures and a fun day spent exploring the city and riding public transit.

In this picture, Afua is in her wheelchair but it is not the focus of the image. I love the urban setting, the movement of the train and the way Afua is looking up toward me. So often in pictures, children who use wheelchairs are put to the side but our photographer found a way to have her beauty shine in every picture. 

Her sweetness melts me. How did I get to be her Momma? There are days I feel so unequipped to the task, but she loves me just the same. 

At another transit stop, we found a cool bench and the cloudy day provided the perfect backdrop. All our kids were such troopers as they knew we would get back on the train and ride some more. 

At the same transit stop, there is a covered walkway. We took Afua out of her wheelchair and she loved seeing the raindrops fall on the glass. 

My spunky girl up front, holding onto her brother who wouldn't have it any other way. And no way is my oldest taller than me. Optical illusion. I was holding Afua because we had to lift her wheelchair on and off the train. Lesson in lack of accessibility....but Eric was a trooper doing the heavy lifting.

What a wonderful day and I look forward to seeing lots of other images from our fabulous photographer. I learned that having a family story-telling photo session is the best way to go!

gait trainer

We have had a prescription for a gait trainer for some time now. We have submitted it to insurance and we are in the process of obtaining one knowing it will be months before anything happens. Our home equipment provider lost the fax, it was re-faxed, then they needed more info from me, then we needed doctor's stuff and then came the first denial. It's just one item on a list of 10 things and we end in this endless loop waiting. I know I've written about it before, but it just keeps happening.

The sad thing was that Afua was ready. So ready and loves to stand upright. They got her a gait trainer at school but it is not quite perfect. But she loves it and wants to be up.

Out of the blue, I got a picture and a message from a friend who works with children with similar conditions as Afua. She asked if we could use a gait trainer for her as they had one that wasn't currently used. Yes!!! And a few days later we made a trip to try it out.

I am constantly amazed how all of Afua's needs are provided for. Each and every need is met so specifically and it is such a blessing.

We took the gait trainer for a trial walk in our drive way and we will have a great summer! We can keep it until our insurance finally approves one, or Afua's needs change.

Go Afua!!!