Esther, Apio & Acen {Conjoined twins and their momma}

In September I was tagged in a Facebook message by a dear friend. She had just heard about a young mom in Uganda who had given birth to twin baby girls that were conjoined and needed immediate colostomy surgery.  A group of facebook friends rallied together and were able to raise the money needed for the babies to travel to Kampala and have the life saving surgery at five days old.  It was a success.  The babies stayed in the hospital where they could be monitored and have tests done.  

We learned shortly after that the surgery needed to separate the babies couldn't safely be done in Uganda.  I volunteered to start looking for a hospital here in the US willing to preform the delicate separation surgery for free.   I was shocked and thrilled when our local children's hospital agreed! 

After lots and lots of paperwork and fundraising sweet Esther, Apio & Acen arrived in Ohio shortly after Christmas.   They have been in the hospital since arrival.  The original plan was they would be hospitalized for their initial surgery (more on that in a second) and then come home with us for a few months until it was time to separate them but the doctors decided not to send them home and have kept them in the hospital until the separation surgery.  They are all three doing amazingly well and have been such a joy to have here! 

The process to separate these sweet babies is long and complicated!  After their initial tests we learned that the babies were indeed good candidates for separation!  Their spines are not fused but are touching in a very small area.  This is good news on one hand (two separate spines!) but there is a little bit of concern about the touching and their ability to walk after separation.  There is no way to tell what will happen until they are actually separated.   The babies had tissue expanders put in a few weeks ago.  These will slowly be inflated to stretch the skin so they have enough tissue to work with when they are actually separated.  Unfortunately they ended up with an infection and doctors had to remove two of the expanders.  They left one in.  We were originally told that they might be able to get away with this one tissue expander but I was heard Sunday that they may go back in soon to put another expander in.  So we're going to have to wait and see what the plastic surgeons decide.  The first expander should be inflated for the first time this week.  We excited to get the skin expansion started!   The babies are happy and fat, exactly as babies their age should be.  Everyone who meets them falls in love.  

Their brave momma, Esther, is staying at the hospital with them.  Despite being young and away from everything familiar to her, she is doing so very well.  We have a volunteer coming in once a week to help her learn English.  She thoroughly enjoys watching Ugandan videos on her TV, eating popcorn and enjoying some of the luxuries we take for granted here in the US.  (Indoor plumbing, washing machines, a microwave, etc).  She isn't terribly impressed with the cold. :)  When we've had a translator talk to her the one thing she has told us is that she is so very grateful for everyone helping her babies.  Whenever we ask her anything her response is the same "as long as the babies are OK, I'm OK."  

Separation surgery is probably not going to happen until early summer so realistically Esther and the babies will be with us for many more months.  They have a long journey ahead of them.  None of this would be possible if not for the amazing group of people who have rallied around to help these little ones.  From the hospital and doctors who have donated their time and efforts (at the request of the hospital I am keeping details vague for now), far away friends who helped Esther and the babies actually get here (Jodi, Melissa, Annie, Pastor Fred and more I'm probably forgetting), local friends who take time out of their week to go visit Esther, do laundry, bring food, hold babies (Amie, Amy, Christine, Susan, Rebeka, Sue, Kristen...) friends and strangers who donated money to get them here and for their stay in the US, the local moms who heard about the babies and left mountains of clothes, toys, and equipment on my front porch for this little family, the people who have mailed us fuel cards to cover the cost of driving back and forth to the hospital and so much more.  There are some amazingly generous people out there - on behalf of Esther and the babies, thank you.  

I will keep you all updated!  Please pray for their continued health during this time.  

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Mayer is 7.....

Mayer is 7 now!  1st grade! 

Mayer just finished his first basketball season.  He had a blast.   He's playing hockey right now, baseball signups are next month and then soccer starts soon after.  He's a very athletic kid and loves to be busy.  

Mayer lost both of his top teeth.  He giggles when we call him toothless.  We discovered last night one of his big teeth is coming in up top.  It doesn't seem possible that he's old enough for grown up teeth.

He's hysterical (like, really really witty) and a born entertainer.  He loves to make people laugh - we often shake our heads and ask ourselves where in the world he comes up with the crazy things he says.   He's so smart and inquisitive and has such a neat way of looking at the world.  He's compassionate and cares deeply about people.   He's a wonderful big brother - he is eager to help his younger siblings, to encourage them, love them. 

It was five years ago this month that we were in Uganda to adopt him.  We had just been granted guardianship and were celebrating that we officially had a new son and would be heading home soon.   Things came to a screeching halt soon after and we then fought for four more months to be able to bring him home.   Our sweet Mayer.  We would fight that fight again and a million more to bring him home.  This boy is such an incredible joy and we are so so blessed that he is a part of our family. 

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Lilly is 12!

Today is Lilly's 12th birthday!  

We had her party on Friday.  She had a blast!
Her big gift was a phone.  She's been begging for one.  We wrapped it up really well and Keith started calling it while she was trying to open it.  She had no idea what it was.  It was adorable.  
Today (her actual birthday) we went to JoAnn Fabrics so she could use her gift card (she picked out some craft stuff) and then to Chipotle for her birthday dinner with her BFF Kensia.  She was all smiles. 

Lilly is such a sweet kid, we feel very blessed to be her family.   
People say, "You make older child adoption look so easy!"  Well, I wouldn't say "eeeasy." :) But we were prepared and had done our homework, which helped immensely. More on that next time. 

For now, we feel so blessed to have added such an amazing young lady to our family!  

 

Benji update

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Ohh, Benji.  So much to say about this little guy.  

Benjamin is 4.5 now and he is REALLY trying to talk.  He's made lots of sounds for several years but in the past couple of months we've seen him really trying to say words.  His communication (through both "talking" and signing) has reached a really exciting point where he can tell us a lot of what he needs/wants.  We have times when he wants or needs something and none of us know what it is (ohhh, that is so very frustrating for both him and us!!) but those times seem to be getting less frequent.  

Benji says "grandma" "mama" "hi" "help" "night night" and "no" clearly enough for people to .   He makes sounds as stand-ins for words.  For example "I want apple" is uhh huh ahhha in Benja talk.  He will sign "apple" along with it so we know what he's saying. :)  He does that a LOT.  Benji knows exactly what he's saying, his poor little mouth just can't form the words!  He has lots of signs now - sometimes he makes up signs and we have no idea what he's saying, which is frustrating.  We all need to expand our sign vocabulary - something for us to keep working on.   I have started working through these online ALS lessons - it's fun!  If you're interested in learning some ASL, check them out.  We're still enjoying our Signing Time videos too.  

Benji is still seizure free (Thank God!) and doing great on Keppra.  His neurologists are very pleased with his progress.  His microcephaly is still significant and as he grows (and his head doesn't) it's becoming more and more noticeable.   At his last neurology appointment we had some frank conversations about expectations for the future and his intellectual disabilities.  No one knows what the future holds for Benji.  We are thrilled with the progress he's made and have no reason to think he won't continue to learn and grow developmentally.  We knew when we adopted Benjamin that he would likely never be fully independent as an adult and honestly, that is fine with us.  

His other medical stuff is stable right now.  His last cardiology appointment was great, his VSD (heart defect) is still small and we were cleared for another year.  He is hearing well despite the lack of hearing in right ear.  His jaw is opening more and more over time - he's doing a specialized therapy to help stretch his jaw muscles and help reduce his oral aversion.  It's been very slowly and we're still not convinced we are on the right track for his jaw but it's all anyone can figure out now.  He will hopefully be going in soon to be sedated for a dental cleaning which is desperately needed since we can't brush the insides of his teeth very well.  In his regular therapy he's working on his balance,  narrowing his base of support, climbing stairs, fine motor skills, getting used to different textures (sensory issues) and the ever elusive dressing and undressing (he has no interest in this what-so-ever!).  He's doing really well and we're really proud of him.  His cleft palate is still un-repaired and will stay that way until they can figure out how to get his jaw opening better.   He is eating many more foods and as long as it's something he can mash up without chewing, he can eat it. 

Benjamin is growing so quickly, learning so much and doing really amazingly well. He is the sweetest little boy, to know him is to love him.  We are incredibly proud of how far he's come and can't wait to see how he continues to grow and learn.  We would love your prayers for our sweet boy as we continue to work on improving his jaw function so he can learn to talk and to eat more foods.  And continued prayers for no seizures are always appreciated too.  :)

Fall fun

I love fall.  While spring is officially my favorite season, fall is a close second.  Sweaters and boots and leaves and pumpkins and bonfires and semi-warm days with cool nights are my favorite.  

Pumpkin patches are the fall thing to do around here. We have been going to the same pumpkin patch for the past couple of years, but this year they didn't do a corn maze so we decided to try someplace new.  

We found a patch online that was just a short drive from our house.  We weren't sure what to expect but it was perfect.  A small, family affair.  A bonfire, hotdogs, hayrides, pumpkins, chickens pecking at your feet and a small, but fun, corn maze.  We had a blast. The kids loved it. 

This is Lilly's first fall.  It has been so fun to watch her experience these things for the first time.   

So thankful for this family of mine!  

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Unstoppable

Jovia’s co-op class learned about kangaroos and marsupials this week.  

   She was so proud that she could hop like the other kids.  She said she thinks she hopped the best in the whole class. 

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A few weeks ago we sat in a quiet library and I watched Jovia pull books off the shelf, put them on a chair, flip through them, put them back on the shelf and get another.  Over and over.  Such a simple thing but such a big step for this little girl.  Independence.  Ingenuity.  Determination.

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This sweet girl is unstoppable.  Inspiring people wherever we go.  Such a gift from God. 

She's gonna do big things, we just know it. 

Updates from around here - goodbye summer!

I just walked back to my bedroom and took a deep breath.  I don’t have anything I have to be doing right now.  This is unusual.  Dinner is in the crockpot, the daily chores are done and the house is in a reasonable state.  Jovie and Benji are napping after their second day of preschool and we just finished the last of the school lessons I had planned for the other kids today.  I’m staring at four laundry baskets of clean clothes that need put away but they can wait.  The house is quiet and one of the first things I thought when I had a chance to sit down was that I haven’t blogged in so long! 

Summer came to a close so, so quickly.  I honestly can’t believe it is September.  Keith has been back at school for 2 weeks now.   He’s in the same district but at a different building, once again teaching music after a several year hiatus teaching other things and doing more administrative work.  It’s an adjustment every year when he starts going back to work, the kids and I get so used to having him home with us during the summer and we miss him when he’s gone all day.  

We have jumped back into school here at home - our official start date was September 2 though we worked on and off all summer on getting Lilly caught up and on phonics/reading with Mayer.   Lilly just got enrolled in our public online school program and was officially placed in 3rd grade.  She was not thrilled with the idea of being in 3rd and I agreed with her that she should probably be in 4th (she says at least 5th but that’s pushing it!).  We are working with our ELL teacher to do some official testing and determine what grade level she needs to really be working at.  She’s such a smart kid!  She’s a math wiz and if you ask her what her favorite subject is, she will tell you math.  Her English is progressing wonderfully.  Our biggest hurdle so far has been reading comprehension and writing.  I don’t believe she had ever been taught how to write beyond copying sentences.  Her penmanship is great but she has no idea how to pull thoughts or ideas out of her head and get them on paper.  So we’ve been working on that a lot.  Also, world and American history, basic geography and basic science.  We’re pretty much starting from the beginning there.  But I know she’s going to learn all these things quickly.  She really is a bright kid and seems eager to learn (most things!  writing is probably her least favorite thing to do!)  We are doing Sonlight with Mayer and really like it so far.  We’ve added Story of the World for some history/geography (we really like it!) and are planning to do Math U See for math, though haven’t started that yet.  He’s still doing Reading Eggs for phonics practice and Mathseeds for math practice and also doing A Reason for Handwriting.  I was a bit nervous jumping away from the very structured, very organized online public school program we’re used to but I’m glad we’re homeschooling him the traditional way this year.  Jovia and Benja are both going part time to preschool.  This is Jovia’s second year (you can read about her first year’s first day HERE) and she was excited but also acted like we were making a big deal out of nothing, she’s an old pro at this school thing!  :)  She was a bit sad that none of her friends from last year are in her class this year.  We once again sent out a letter to all of the families in her class talking about Jovia and sharing some pictures so that the kids could get their questions answered before the first day of school.  I think it helped but this group of kids seems quite a bit younger and maybe a bit less mature than last years group.  She still had to deal with a good amount of questions and lots of stares from the other kids her first day.   It frustrates her but we're trying to teach her just to roll with it (no pun intended!).  We know she'll be dealing with this her whole life.  She handled it well and I know the kids will adjust soon and before we know it they will just see her as another classmate.  She’s learning to be a bit more forceful, which I’m happy about.  I watched her very loudly tell a little boy “No!  Stop it!” who was playing with her hair.  She can’t get a way from other kids very quickly/well so we have talked a lot about using your voice and also going to an adult for help if you need it.  She’s starting to pick up on those things.  Benja started going for the first time this year.  He is very much our baby and gosh, it was a bit hard for me to see him heading to preschool like a big boy.   He did great!   He loves it and hasn’t wanted to leave each time I have come to pick them up.  Since we are sending him to a private Christian preschool the school district wouldn’t provide an aide for him so we ended up hiring a very sweet college student who goes to school with Benji and helps him while he’s there.  It’s been a good set up so far and we’re hoping things continue to go well.  Millen, Kensia and Finn are doing the BJU Press homeschool programs this year and really ,really like it.   It’s been really good for them and I’m impressed with it.  If it weren’t quite so expensive I think I’d have tried it with all the kids this year but it is costly.  All of us are signed up for fall homeschool co-op and classes start next week.  I’m excited about this school year, I think it’s going to be a lot of fun.  

What else?  We’re prepping for fall/winter sports and the kids are anxious to get back to the games they love.  It seems like baseball season just ended, then summer soccer came and went and now I already have fall soccer and hockey signup dates on the calendar!  I’m glad the kids love sports (and I love it too!) but whew, it can be exhausting.  :)  Kensia, Finn, Lilly and Mayer are all playing fall soccer, which means four days a week of soccer.   Finn and Mayer will be playing hockey again this year.  Practices start in October.  Finn is planning on joining the team while Mayer will be in the Learn Hockey program.  Lilly wants to try ice skating but her intense dislike of anything cold makes me think this won’t be a sport she’ll stick to.  :)  Both Kensia and Finn are still in gymnastics.  We're staying busy! 

Everyone here is doing really, really well.  The kids are growing and happy and healthy (Benji is going on 19 months seizure free, thank the Lord!) and I feel like I’m getting back into a normal (for us!) routine after such a crazy couple of months since Lilly came home.  

I will write more soon, I have several drafts waiting to be finished and published….I will try hard to make time to blog more often.  Thanks for following along on our journey!   (Some random summer pictures below!) 

Putt Putt in the rain 

Putt Putt in the rain 

Beautiful Girls

Beautiful Girls

Summer soccer photos

Summer soccer photos

Indoor soccer and baseball

Indoor soccer and baseball

More baseball  :)

More baseball  :)

Early morning cuteness

Early morning cuteness

Stay-cation to the zoo! 

Stay-cation to the zoo! 


Our trip to I-CAN - Arizona 2014

I first heard about I-CAN shortly after bringing Jovia home from Uganda.  I-CAN stands for International Child Amputee Network and I'm so very glad we got connected with this group!  

We wanted to attend last years conference but the timing didn't work out, I was in Uganda that week.  This year we knew we had to make it a priority.

Jovia and I left for Tucson on a Wednesday. Jovia had been on an airplane before but she was a baby then and doesn't remember it.  She was so excited to fly! 

I spent several days before we left trying to figure out how I was going to get Jovia, her big, heavy carseat  plus my bag through the airport.  We tried a couple of different options but ended up taking a double stroller with one of the seats removed.  She sat in one seat and I laid the carseat in the spot where the other seat normally sat.  I approached the gate agent at each gate and told them I was traveling with a child with a disability and that we would need some additional time to get onto the airplane.  Everyone was very nice and accommodating.  Each time they  moved my seat so we were close to the front of the plane or in a bulkhead.  We were called as the first to board each time and I was able to push the stroller up to the airplane door.  I then sat the carseat upright, took Jovia out of the stroller and strapped her in the carseat.   After folding up the stroller I picked Jovia and the carseat up and carried them to our seat.  It was very awkward and heavy (about 55lbs for Jovia and the carseat together) but it worked.  Twice a nice man helped me carry her so I only had to do it myself twice.  

We got to Tucson around 10pm.  After getting our rental car we headed to the hotel where the conference was being held.  We were surprised to see that the conference greeters were still waiting for us!  We said a quick hello before getting ourselves to our room and ready for bed.  We were tired!  

The next morning we got up and went to meet everyone for breakfast.  Jovia was so shy and nervous!   I really think seeing so many people with missing limbs was a bit of a shock for her.  We had talked about it but she has never seen another person in real life without arms or legs.  

I-CAN had activities and sessions planned for the 4 days we were there.  We visited a planetarium and museum, learned about service dogs, had several mentoring sessions, went swimming, visited the desert, had a dance night and generally spent time getting to know the other families.  The conference was free and I am still amazed at all they were able to offer the families who came - even the meals were included!  

Jovia started warming up slowly.  We spent some time with another 4 year old girl who was there and they started getting along really well.  Jovia was very anxious to meet Minda, a new friend we met online who was also born without arms or legs.  She got so overwhelmed when she finally met her, she could hardly talk!  She really connected with some of the teen girls who were there, two in particular she had a lot of fun with.  

People have asked me whether I think Jovia was too young to really "need" this type of conference, or be able to appreciate it.   The answer is no.  I think now, at this age, it is extremely important for her to be around people "like her".  At age 4 she is very aware that she is different.  She wants to "blend in" and be like other kids at this age.  It can be hard for her at times, kids pointing and asking questions...not being able to run and play with the other kids at the playground...having to have help with things that other kids can do themselves.  I am so grateful that she had these four days to not be "different".  To be able to watch other kids without limbs do things, watch them eat like she eats, pick up things like she does, be pushed in wheelchairs, hop instead of walk, etc.  We got tips and hints on how to help her be more independent and talked through issues that may come up in the future with people who have actually been through it. 

We had a wonderful time at I-CAN.  I hope and pray we can bring Jovia every year.  I want her to grow up with the knowledge that there are people just like her out there.  I want her to look forward to spending time every year in a place where she isn't viewed as different, a place where she can just blend in and build friendships with other kids like her.   

If you have a child with limb differences I really, really recommend getting connected to I-CAN. Plan your summer around this conference!  You won't regret it.  

Visiting the desert.  




Jovia meets a Policeman - Tucson 2014

I'm going to write about our trip to Arizona for the I-CAN conference soon.  We had a great time!  In the mean-time I want to share a sweet story with you all.  

On our way home from Arizona we had a bit of extra time in the Tucson airport.  Jovia and I were sitting at a table in the food court waiting for our lunch when a policeman approached us.  

He looked right at Jovia and said, completely seriously:

"I'm so glad you are here!  I've been really busy catching bad guys and I need some help.  I'm looking for a junior officer, you look like you would be perfect for the job...."

He pauses, waiting for a reaction.  Jovia stares at him wide eyed, while I smile and nod encouragingly.  

"Would you be willing to help me?   Here, I have this badge for you...(digs in his wallet and pulls out a badge sticker)  Now, you'll just need to keep an eye out for bad guys and call me if you see any.  Do you think you can do that?"

Jovia's eyes get even bigger but a huge smile appears on her face and she says "YES!"   He handed us the sticker, said "thanks!  call if you see any bad guys!" and walked away waving over his shoulder.  

This short interaction, probably a minute long, made such an impression on Jovia.  She was so proud, so excited that he chose HER.  Of course, I wanted to hug that sweet police officer for making my little girl so happy.  She wore her badge proudly and told me multiple times during our travels home "I'm still watching for bad guys mom!  I'm gonna be the police when I grow up!"   Of course, she changes her choice of future professions daily - she wants to be in the circus, a soccer player, a doctor, a pilot and now a policewoman. :) But I have no doubts that she can be and do anything her heart desires.  If she wants to work with the police, Jovia will figure out a way to make that happen!  

Even though he'll never read it, I want to say thank you, police officer at the Tucson airport.  You made quite the impact on this little girl.