"Learning to See"

 

 

 

Life is changing once again at the McNutt household.  Joyah received her glasses at the end of October and has loved them from the first time they were placed on her face.  It must have been an immediate help to her vision as she started pointing at everything and asking what “that” was all around her.  Joyah has never tried to take them off and has learned to say “glasses” as well. 

            With the addition of glasses also came the new stage of eye “patching” that we had to begin in order to help improve vision in her left eye.  We have to patch the “good eye” (Right eye) to hopefully get the “bad” left eye to turn more vision on.  She has a poor optic nerve in the left eye.  We were under the assumption that with glasses she would have good vision in her “bad eye” and with patching it would just improve.  That has not been the case at all!           

            The first three days we “patched” Joyah she sat or stood in one spot crying and crying as she refused to open the un-patched eye to play or move around.  The eye doctor had asked us to “patch” her for 6 or more hours per day due to the severity of her case so you can imagine how terrible this was becoming.  On the fourth day, Joyah began to open the left eye but ran into walls, doors and tripped over everything on the floor.  We also noticed she was feeling for her food on her plate and feeling for toys on the floor.  This “patching” therapy revealed that she is very blind in her left eye and that glasses do nothing to help that eye. 

            Due to the extreme vision difficulty that even the doctors didn’t realize, they have now allowed us to “patch” for 3 hours per day.  This gives Joyah more time without the patch in which she can actually see to work on her speech, occupational and physical therapy exercises.  As you can imagine, you can’t learn eye-hand coordination if you can’t see. 

            After realizing the depth of Joyah’s visual deficits, Joyah will now be receiving services from The Children’s Center for Visually Impaired (CCVI) in order to help her learn to “see”, the best way she can.  This means helping her to be safe when walking by teaching her to scan her environment better and by teaching her to use the vision she has to accomplish tasks, like puzzles and stacking blocks etc.  We are praying that this new sight-centered therapy will help her advance more quickly with her current deficiencies.

            As we continue to discover more of the “layers” of Joyah’s health, we are thankful that the Lord has allowed us to do so at such a young age.  The opportunities that Joyah has access to are endless and amazing.  We are so thankful for these opportunities as they continue to help Joyah become a beautiful, talented and strong young lady.

Joyah turned 2 years old!

Well, I'm a little behind with the blog.  The following is the latest article written for our church newsletter.  Joyah began wearing glasses a week and a half ago and loves them!  It is obvious that they help her out a lot!  However, a day after she started wearing glasses, we also had to start "patching" her good eye (right eye)  in order to hopefully maintain or increase vision in her left eye.  She has a pretty severe optic nerve issue and has little to no vision in the left eye at this time.  "Patching" has proven to be very frustrating for her.  She doesn't try to remove the patch but the first 3 days she refused to open the unpatched eye to play or walk. On the 4th day she began to open her eye but it is still quite obvious that she is only seeing enough to avoid running into walls at this time.  It is quite sad and she cries a lot.  She has to feel for her food and her toys and is currently unable to see them.  We pray that with time this will improve and that in a couple of weeks we may be able to "patch" her for less than the required 6 hours per day.

"Joyah turns 2 years old!"

As of October 2^nd, Joyah has officially been home from China for 6 months!  It’s amazing how quickly that time has passed but her accomplishments over that time are equally amazing.  When we first arrived home, Joyah was barely crawling and only on particular surfaces and she was still drinking from a bottle with help.  She is now walking, trying to talk, drinking from straws and not scared of the things that used to terrify her (such as animals).  She has truly switched from the infant stage (even at 18 months) to the toddler stage during these 6 months. 

            Over the course of these 6 months it has been apparent that Joyah was experiencing vision issues.  The depths of these issues are still not completely known but two vision exams by experts this week have determined much of them.   Joyah will be receiving glasses within the month for extreme acuity differences and deficits.  Her left eye is nearly blind and has an unhealthy optic nerve.  Her right eye is very weak but is her strong eye.  The glasses should help her acuity immensely.  Joyah will also need to be “patched” on the right eye everyday in order to make her left eye stronger and maintain vision.  If her brain isn’t forced to use her left eye, she may lose sight in that eye.  Our boys will certainly enjoy playing “pirate” with her.  Joyah will likely receive an eye muscle surgery to correct some further difficulties with her vision in a couple of years.

            Joyah turned 2 years old on October 13!  It was fun experiencing her very first birthday party along with family.  She really enjoyed her “Hello Kitty” party and liked the clothes, shoes and purse she received a lot!  Joyah is nothing like her “Momma”, as I could care less about most of those things.  I believe she will be a girly girl.  It was a very special time for the whole family and different to see all the “Pink” around.  God is good and we are so thankful for all the gifts he has given to our family through Joyah.             

 

 

Home 6 months from China- Oct 2nd!

            A new routine has started in the McNutt home as school has started for the boys and I (Michelle) have gone back to work.  Joyah is now attending daycare twice per week and loves every minute of it.  She receives therapy on the days we are at home either from a therapist or from mommy so going to daycare, I believe, are her “break” days.  She already knows the routines at daycare well and puts herself to sleep for nap.  We are thankful that she is enjoying it and adjusting well.

            At home, Joyah continues to receive speech and occupational therapies.  She is making progress all the time and has been able to say many new words and sounds.  Occupational therapy is still a challenge as she strengthens her mouth muscles and hand control.  Her right hand is difficult for her to use and it takes a lot of thought process to work it.  As part of her therapy, we have to wrap her left hand with an ace bandage so that she is forced to use her right hand.  At first, she hated it, but now, she is even capable of using a fork to feed herself with her right hand!  She loves singing the alphabet song and can say many phonetic sounds.  We are diligently working with her to get her to string the individual sounds together to make complete words.  She’s learning more and more words every day. Right now her favorite word to say is “that” as she points at anything and everything.  Now we just need to get her to put the “What’s” in front of it.

            Recently, it has been very noticeable that Joyah has vision issues as well as some instability when trying to walk and remain balanced.  She will be receiving a full examination by the Children’s Center for Visually Impaired in October in which we should be able to determine what kind of vision she does or doesn’t have.  We were told months ago that she would need glasses but we still don’t know the extent of the help she needs.  It will continue to take quite some time to figure out all the needs that Joyah has and how to help her but God is faithful and continues to be with us every step of the way.  It’s often not an easy task, but we are thankful God chose us to love and help our precious little girl along her way!

The New Normal- Home 3 Months

Life is beginning to smooth out and feel more normal around here.  Since I am a couple months behind I will attach an article that I wrote last month and this month for the Orphan Ministry Newsletter at church to catch you up on Joyah's progress.

2 Months Update

It’s hard to believe but we have now been home from China with Joyah for 2 months.  So much has changed in the last two months.  Joyah is becoming a “toddler” with her accomplishments whereas before she was very much in the “baby” stage.  She used to hate trying to walk, being put on a floor or playing with toys by herself.  Joyah is now walking around, climbing stairs, opening cabinets and doors, and prefers to play by herself much of the time.  She certainly doesn’t want one of her brothers playing with “her” toys. 

Her sleep patterns have improved greatly and she is able to sleep through the night most of the time.  We still have random nights of crying at 2am or waking for the day at 4 or 5am but for the most part we aren’t as fearful of having a bad night’s sleep.  Sleep is so wonderful!!

In May, Joyah visited the eye doctor at Children’s Mercy Hospital.  It was determined that she is very “near-sighted” and will need glasses.  At this time, they did not want to worry about glasses with her and will re-evaluate in November. If her eyesight has not improved, they will fit her for glasses at that time. 

Over the course of the past month, Joyah was also evaluated by Missouri First Steps Early Intervention.  It is a program run by the Missouri Dept of Education that provides therapy services to children under the age of 3 who are in need of these services due to greatly delayed areas of development.  Joyah is delayed in many areas but they are concentrating on communication, self-help skills (feeding) and cognitive developmental abilities at this time.  We are so thankful for the help and support that this program will provide her and for us as her parents.  She had her first visit last week in which they were working on getting her to make certain sounds with her mouth.  They reward her work with being able to play music on a toy or play with a toy in a non-specific way.  Oh boy!  The therapist had a very stubborn and unhappy Joyah to work with.  It ended up being a long hour.  When something is hard for her to do or she doesn’t want to cooperate, she isn’t a happy camper.  Again, I’m so thankful for their help and encouragement!  It’s nice to know that I have support in working through the tantrums and that they are not giving in until she accomplishes her task.  So, for 1 hour per week, I’m not the only bad guy J

The past two months have also been filled with a lot of “firsts” for Joyah.  First trip to the zoo, first grass to feel, first pool day, first flowers, animals, baseball games, boat rides, amusement parks, nature walks, etc.  We have discovered that she loves the wind in her face in the car or boat and seems to enjoy water quite a bit now.  However, we have also discovered that she has a huge fear of animals, taxidermy, and statue like characters.  I have a feeling she won’t like the Chic-Fil-A cow either whenever she sees it.  Her first trip to the zoo we discovered that penguins scared her as well as any animal that she was close enough to see.  In China, we discovered she hated bronze lion statues and monkeys.  At Cabela’s and Bass Pro, she hated the taxidermy animals.  Most recently she was scared to death a big plastic chipmunk inside the Burr Oak Nature Center!  There was no convincing her that the cute chipmunk holding a nut wasn’t going to eat her up.  We have no idea how this crazy fear of animals started but it is certainly something we will have to work through.  We are an animal and nature loving family so there is no avoiding it. 

We are so thankful to see all the things that Joyah accomplished over the past two months.  Given her medical history, we weren’t sure we would ever see many of these accomplishments, such as walking.  Our God is so faithful though, and He continues to prove it to us even when life isn’t always going easy. 

 

Scary Penguins!

 

 

Big Brother Jonas Reading with Joyah

 

Carousel Ride at Silver Dollar City

 


Ready for her First Boat Ride-Memorial Weekend


3 Month Update- The New Normal

Life is beginning to settle in the McNutt household.  Joyah has been home with us for 3 months now and we are beginning to feel like a family of 5.  For a while it felt like there was a temporary new child living in our home but after time and routines have been established, we are beginning to gel as a family.  

            Joyah continues to make improvements and accomplish new things.  She is walking much more steadily and is now trying to make new sounds and say words.  Her therapy sessions, that help her with speech and feeding skills, have improved and she has been much more cooperative.  Her tantrums have lessened but she is still quite opinionated at times with us and her brothers.  Joyah also used to scream a lot in the night and now if she does; it is short-lived and usually doesn’t require us to get out of bed. Praise God!

            Summer time has allowed us to experience several more new things as a family.  Joyah had her first ice cream cone and she has been swimming, which was scary for her the first few times but has gotten better. We also took Joyah on her first camping trip over the July 4^th holiday.  She loved the rocks (or rahh-rahhs as she calls them), water, and looking at the camp fire.  Sleeping was a bit rough the first night as she decided to “play” in bed for three hours in the middle of the night, shaking the pop–up camper as she jumped up and down.  We didn’t dare let her know we were on the other side of the curtain, however, so we had to bite our tongues and try to sleep.  We are convinced that she must do this a lot at home too, given the way she looks and acts in the mornings sometimes.  Her sleep patterns are still quite puzzling. 

            Even though we still have our many challenges, we are so thankful to God for the progress that Joyah has made and for helping us persevere through the journey of family adjustment.  God is so faithful! 

Learning to like animals

Loves the 4-wheeler!

Silly faces with brothers at the zoo

First Ice Cream Cone

Playing on the Camping Trip

 

 

 

One Month Home and She's Walking!

Yesterday was Mother's Day and not only did I get to spend it with all of my family and all 3 of my children, but Joyah took her FIRST STEPS!  On Mother's Day!  I never expected it because she often gets angry when you try to walk with her if its not her idea.  God is SO GOOD!  It has been a fun but tough month of adjustment but things are improving so much every day.  I will share part of an article that I wrote for our Orphan Ministry newsletter that helps sum of the month.  Sometimes it's hard to be honest but here you go....She is a blessing!

It was a really tough first week, much tougher than either of my newborns who didn’t sleep well, but didn’t cry.  Joyah, however, didn’t sleep and screamed, a lot.  One month later, I still hear phantom screams.  It’s a term I use which means “hearing screams when there is nobody screaming”.  It’s real!

            During this really tough first week of little to no sleep, we were blessed by so many of our friends and church family.  We had meals coming and it was the most helpful and loving thing that could have been done. My Mom came to help with the house and laundry as well.  I was so exhausted that when I was awake the room would spin and driving was just as bad.   About a week later, however, Joyah slept most of the night in her own room and crib, only waking a couple of times but putting herself back to sleep.  This was the beginning of a huge “Yes” answer to prayer.  Since then we have had many better nights then bad and we hear the screams and the “phantom” screams much less.   

            So, if no one has ever said that adoption is hard, they haven’t told you the whole truth.  The process is tough, expensive and emotionally draining.  Bringing a child home to your family that you did not “carry” for 9 months is really hard!  Our new daughter came home to us at 17 months old and not as a cute, cuddly newborn.  My boys didn’t sleep as newborns but they also didn’t come with a 2 year old attitude from a country that doesn’t tell their kid “No” until they’re 8 years old either!  Joyah has thrown tantrums that require us to restrain her, accompanied by the screaming.  It was a tough start but her tantrums and attitude have also improved tremendously.  We are so thankful.

 Over the past month, I have questioned my decision to adopt at times and whether I really wanted to share my house with a girl.  I share this because it’s the real face of adoption and that it requires a real choice to love a child that can be hard to love.  God must feel that way about us sometimes, but He chooses to love us no matter what.  Sometimes it takes work and a decision to love a child.  Self has to take a back seat.  I have come to realize how comfortable I was with having two boys who are now 8 and 5 years old.  They can use the bathroom, feed themselves, play independently, let you sleep in and allow you to be selfish.  Letting go of the “selfishness” is hard! 

However, throughout all the struggles of sleep, tantrums and stubbornness, we have seen the hand of God move mightily.  The doctors expected Joyah to have a lot of difficulties using the right side of her body because of the medical needs she experienced as an infant.  She has “happily surprised” all the doctors and therapist at Children’s Mercy Clinics.  Her CT scan would say that she cannot do everything that she is doing but she is doing very well.  She can use all limbs and as of Mother’s Day, she can walk!!!  God knew I needed this encouragement and special gift.  When we first met her she refused to try to stand, crawl or do anything off of a bed.  She wanted to be carried everywhere and would be quite stubborn at times.  It is very difficult to get her to try anything that requires her to work hard.   This includes drinking, playing with toys in a particular way and walking.  I am so thankful to say that she is now taking steps and drinking out of a straw cup independently.

God is good.  It’s been a rewarding month of accomplishments and “firsts” as we are new parents to her.   She has experienced more new things in the past month then she had in her entire life until now.  It’s pretty special that we get to be the ones to experience it with her.   Even though this month has also been one of the toughest of our lives, it has also been quite rewarding.   God never said doing His work would be easy but the rewards are great!

Mother's Day 2014

She's Walking!!

 

Easter 2014

 

 

Loving the Swing



One Week Home

We are so thankful to have made it home on time last Wednesday, April 2nd without any problems.  It took us a while to get through security and customs in Seattle with the addition of adoption paperwork but our plane arrived early from Tokyo and allowed us the extra time to board the flight home from Seattle.  Joyah was a handful on our first flight but the rest of our flights home she did as well as we could have expected.  She ended up sleeping 7 of the 17hours in the air.  We did not sleep but a few minutes here and there which ended up being a big problem once we arrived home.

Joyah was met by family at the airport with balloons, flowers and signs.  The boys had even made her cards.  Joyah is really enjoying her big brothers.  Even from the first night, they have enjoyed playing and laughing together.  Anything that gets her brothers to laugh she will keep doing over and over, especially at the supper table. 

Sleep!  Oh precious sleep!  That is what we have been lacking over the past week.  Joyah was a co-sleeper in China with her foster family and we had tried to do this with her as well to foster the attachment and bonding process.  However, it didn't seem to matter too much whether we slept with or without her, she just did not sleep.  She screamed less in bed with us but just played around or was up every 30 minutes or so.  She was better sleeping in China but she gradually got worse before leaving for home.  I am thankful to report after trying lavender, melatonin, zantac, weighted blankets, time and prayers, she has now slept TWO whole nights in her bed without us and has put herself back to sleep when waking!  We are SO SO thankful!!  I hope the new habit will continue.

Joyah had her first checkup with Children's Mercy Hospital on Tuesday.  The doctor was happily surprised to see her trying to walk with help and using her arms and legs as she does.  Her previous medical needs would have suggested that this may be very difficult for her.  She received some immunizations and blood work.  The blood work all came back great today.  She is healthy!  Joyah will be getting a Physical Therapy and Occupational Therapy evaluation soon as well as an eye exam to see if anything needs to be addressed to further her proper development. 

In the past week since being home, sleep was a huge problem but we have seen so many accomplishments with her.  In China, she would cry if put down on the floor to play.  She would cry if you tried to help her walk.  She would cry if you encouraged her to pick up her own food on the high chair.  Joyah is now crawling on all surfaces, trying to grap your fingers to walk, pulling herself up and feeding herself finger foods quite often.  We are so thankful! 

Her are some pictures of Joyah's first night home with the boys, first time going to church, baseball practice and wagon ride.  Thank you for all the prayers for our safe journey home and for Joyah!

First wagon Ride

First baseball practice

Our Travel Group of Forever Friends

First time playing with Joyah

Boys showing Joyah her cards

This is what happens when you don't sleep!

Crawling before church

Visa Appointment

Today we had scheduled appointments at the U S Consulate to obtain US visas for our children to enter the US on their Chinese passports.  The appointment was at 8:30am and we  were to meet in the hotel lobby at 7:40am to catch the bus.  That of course meant we had to get up at 6am in order to have breakfast before going.  Normally this would be just little bit annoying but last night Joyah was quite stubborn and kept us wake from 1:30 to 5:15am.  So, yes we were tired and she was not happy when we woke her at 645am for breakfast.  She is currently napping and has been for 3 hours.

We all gathered in the lobby waiting for our bus but at nearly 8am it had not arrived.  Our guide found a van getting ready to leave to take 1 family to the Consulate amd piled us tightly in to go with them.  There was no room for our guide so we were at the mercy of the new driver and guide.  Our guide said she would meet us there.  So off we went in the rain that had never stopped to our appointment.  We quickly found out why our bus was late.  A huge traffic jam and of course we were late for our appointment.  Thankfully the Consulate allowed us in as both guides called to plead our case because of traffic and weather. We could only take a few needed items in a plastic bag and had to trustfully leave bags and purses on the van.

We walked in the rain to the building, went through security with our clear plastic bags and had to leave umbrellas with the guide outside.  After getting through security we walked quickly to another building without umbrellas and eventually found the right place.  We took numbers and waited our turn to complete visa paperwork after saying an oath promising to take care of our child and that all info was correct.

Tomorrow we are supposed to receive the visa  for Joyah and will take a 3 to 4 hour van ride to Hong Kong airport at 4:30pm.   We will sleep at the airport hotel and will fly to Tokyo at 8:20am Wednesday, China time, arriving 4 hours later. We have a 3 plus hour layover before boarding a 9 hour flight to Seattle.  We have a short layover to get through customs before boarding another 4 hour flight to KC.  Scheduled arrival is 4pm Wednesday in KC. Please pray with us for smooth travel and an agreeable daughter.

We do not have new pics from today because cameras were not allowed.  We will share a picture of the "squatty potty" that all of us girls are tired of and some familiar American snacks.

Rainy Season at it's Best!

Thunderstorms rolled in at 2am and the rain has never stopped.  It is nearly 6pm here.  Needless to say the rain and now my upset stomach has put a damper on the day.  Hopefully the Pepto does the trick but another member of our group has been sick all day.  Pray for our group as all of us have to be at an early morning visa appointment with the Consulate, sick or not.

We did go to a few places in the rain but did not get to experience the architecture of the buildings on Shaiman island.  Shaiman Island was once controlled by the British and contains lots of shops, restaurants and hotels built in the Colonial 19th century.  It is listed as Guanhzhou's top attraction.  We had lunch at a Cantonese style restaurant, went to 2 stores and then the rain kept us from going any further.

This morning we stopped at The Chen Ancestrial Hall which was a vacation home in the 1800s during the Chen dynasty.  The Hall is now an Art Museum containing many carvings, paintings and silk embroidery.  One of our pictures is of an ivory ball that was carved into 54 layers.  Some of the silk embroidery pictures we were told take 5 to 6 years to complete. Pretty amazing.

We were also taken to a huge mall that was filled with nothing but jewelry vendors.  Five floors of jewelry!  There is so much retail in China that is hard to believe that they can all make a living.

Tomorrow is our last full day in Guangzhou before heading to Hong Kong on Tuesday to begin our journey home.  We will have a visa appointment in the morning and are supposed  to attend a river cruise tomorrow evening.

Shaiman island

Jewelry mall

54 layer Ivory ball

Silk embroidery

Journey to Guangzhou

Yesterday was a travel day getting to Guangzhou where the US Consulate is located.  We had to check out at 2pm and hang out in the lobby until 3pm for the van to the airport.  Beforehand we killed plenty of time packing and figuring how to communicate to order a KFC lunch.  We have not been able to eat easily on this trip.  In fact, Ramen noodle buckets have been an easy and cheap lunch or dinner many times especially since you have boil water in your room before drinking it.

While in the lobby waiting for our guide we finally got Joyah to take a 30 minute nap before heading out to the airport.  This ended being the only rest she got until the bus ride to the hotel at 9pm.  She just can't rest if there is any noise or chance she might miss something.

Our guide came at 3pm to take us to the airport for our 6pm flight but on the way we needed to pick up our Child's Chinese passport.  The passport office usually takes 9 days to complete them but in the adoption process we have to ask favors and give gifts for them to be done in 3 days before going to Guangzhou.   When our guide arrived at 3pm he told us that we would leave at 3:30 to go pick up the passports and head to the airport because they were not yet done.  So at 3:30 we piled all of the families and luggage into the van.  We could not have been packed in much tighter.  We drove drove down the road a bit and eere told to wait in the van with the driver while our guide went to get the passports.  The driver opened the sliding door for air while all of us (3 families) waited.

Apparently a bunch of Americans packed tightly into a van creates quite the display.  Almost every man that passed stared intently as they walked by and the women smiled or stared as well.  The school children ran by giggling and seemed to be daring each other to run close, say something and run off again laughing.  Time began to go by and still no sign our guide or passports.  Finally at 4:30pm he returns but with only 1 passport for 1 family.  He said we must get to the plane and the other 2 passports, including Joyah's may have to be mailed to Guangzhou or a friend of his would try to get them to us before getting on the plane if they got done in a short time.

I don't know how we would have gotten on the plane easily or how we would have done today with her medical exam and completion of more paperwork without that passport but God took care of the timing.  Just as we were about to walk through security a lady ran in with our passport for Joyah and the other family's child.  We got to our boarding gate 5 minutes before boarding time with all documents we needed for Guangzhou.  Praise the Lord!

Today we visited the US Consulate for Joyah's medical exam and completion of more paperwork.  Boy is it humid here!  We are close to the China Sea and it is the rainy season. It is quite tropical wth palm trees and year round blooming plants.  We plan to go to a park nearby tonight and tomorrow we will sight-see before our visa appointment on Monday.

I will try to add some pics later tonight.

Here are some pics from yesterday, the medical appointment and the beautiful park near the hotel.  New accomplishment, she now likes baths!

Qingyan Ancient Town

FYI:  I am having difficulty with the blog retaining my pictures.  My tablet has not been nice to me!  I will fix when home, sorry!

Today we paid for an extra adventure while here in Joyah's home province of Guizhou.  It was a beautiful day around 70 degrees and much more fun than the alternative of spending the whole day in the hotel room.

We drove about an hour through the city of Guiyang and out into the country a bit.  There was a lot of road construction near the Acient town and we heard that they are trying to make a resort.  Qingyan town was built in 1378 during the Ming dynasty and is still a functioning town with lots of vendors.

Last night was our first "bad" sleep night with Joyah.  She was awake for nearly 4 hours playing in the bed while I was trying to sleep.  Thank goodness James and I are taking turns sleeping with her!

The "Honeymoon" period as our friends call it is also over.  If Joyah does not like something or get her way she throws quite the fit!  She must know the word "No!" by now.  She is still a happy girl a lot but she must have been the one in charge in her previous home.

Tomorrow we fly to Guangzhou at 6pm our time, 5 am Friday in the states to start the completion of our documentation with the US Consulate.  I have been told that our hotel there has bigger rooms and a play room.  That would be great!

Blogging may or may not occur tomorrow.

Dried sweet potatoes