The Art of Becoming a Missing Person, AKA where have I been...

Wow...over 2 years.

How can that happen?

I started with the death of my laptop...then a life in crisis...then walking away from almost everything I did publicly online.

Two years ago I was seriously struggling - spiritually, physically, emotionally, mentally.

Today I am seriously struggling - spiritually, physically, emotionally and mentally.

But I am not in the same place I was 2 years ago.  In some ways I'm in a better place, but in some ways not.  Just different I guess.

Why am I back?  I'm not really sure.  I know that writing for me is therapeutic in some ways.  But  for one thing, I finally have a laptop again.  Sitting at a computer for any length of time is just not an option for me anymore (I'll explain that in a minute).  I sometimes feel guilty for leaving my readers hanging after posts about depression, health problems, adoption and other struggles....but most of the time I've just not thought about it much.

Actually I'm not sure I'm back.  That depends on if anyone reads this!  If anyone comments... If anyone really cares.

There's too much that has happened in the last two years to actually talk about it, but I can share a few highlights.

2017:
January  - just couldn't go on having a home business
March  - sold Snap-EZ to my seamstress, Stephanie, also started taking anti-depressents
August - Began weaning off anti-depressants, too many side effects (gained back all 70 pounds that took me 4 years to lose, wahhh)
September|October - 6 week sinus infection. 4th antibiotic (one for the plague, literally!) finally worked
November - Reuben starts a courtship
December - took my last anti-depressant




2018:
January - Our family at home began attending the church we used to attend (1996 - 2004)
              - also diagnosed with allergic asthma - my lung function was at 70%! Yikes!
             - Esther diagnosed with Retina Edema, 13 trips to Children's Hospital in 6 months
February - My knee permanent injury acts up again, causing me to learn how to live with using a cane
April - Enrolled Esther and Christy at our local public school special ed program, 1/2 days
         - Reuben gets engaged, starts a new job,                                                    working swing shift
         - steroid injection in knee - only helps for less than 2 weeks
June - Diagnosed with Fibromyalgia
        - Rebekah and Rachel move out to try living away from home (they are 20 & 23) at the time
July - We put the house on the market, hoping to move to a one level home with less yard/square footage to maintain
August - Synvis injection in my knee - still working great! My cane is retired indefinitely
        - Reuben's fiance calls off the engagement/courtship
August - Christy & Esther enrolled full time in special ed, other school-aged children enrolled at the parent partnership program (homeshooling, but children take classes 2 - 3 days a week)
September - Rebekah moves back
October - Reuben gives notice, goes back to old job after being given an offer he can't refuse




Of course there are so many things that this list leaves out, but as you can see from this small fly over, my life today is very different from what it was a few years ago.  Chronic pain, grief, depression and stress change a person.  More days than not, I am barely able to function enough to get the children ready for school and help with homework.  Anything beyond that is practically a miracle now.

If you are like me, and most people, you know practically nothing about fibromyalgia.  I have learned so much since my diagnosis.  I can look back and see that my journey through fibro started 3 years ago.  For most people, fibro is triggered by something that happens that is traumatic - a car accident, the death of a loved one, the onset of chronic pain etc.  For me it was a combination of several life events - the suicide of a friend, the diagnosis of a fatal birth defect in and subsequent death of my daughter's first son, injuring my back,  and the onset of severe health problems.  Overtime, my health (emotional, physical and spiritual) began to decline.

My Daily Life Saving Stuff

So where am I today?  I have been able to lessen some of my fibro symptoms through supplements, CBD oil,  becoming close friends with my heating pad, the use of many pillows (and now my favorite - the U shaped body pillow), and a product called "Beauty Sleep" that allows me to actually sleep most nights now.  I still have bad days where pain and brain fog rob me of the ability to function above a very basic, survival mode.  But I also have good days - where I actually am able to fold some laundry/wash some dishes/go shopping....I'm still learning.  I'm still struggling.  I'm still coming to grips with this diagnosis and it's long term repercussions for me and my family.

My latest and greatest Granddaughter!

I'm also planning to write a book - maybe more than one - but I'm going to start by writing about a family vacation that we took back in 1999 - the last road trip we ever took as a family.  I've decided on a title:

Looking Up Washington's Nose:  A Monumental Vacation

This vacation included the stomach flu hitting everyone in the first 6 hours, an engine fire, getting jack-knifed, a tornado, a flash flood, dropping the trailer, and more.  It's an epic tale of survival and making memories.

one of my therapy kittens, Prim

So, does anyone want to know more?  If I continue this blog, I'm sure I will share about life with fibromyalgia.  I will also share life with special needs, wonderful grand-kids, children achieving important stages in life, and how I'm coping - the hard times and the times I rise above. And, of course, I might include some snippets from the book as I progress!

Please comment below if you want to see me blogging again!

About These Last Six Months

The last six months have been the hardest six months of my life thus far.  It wasn't any one thing, but there were definitely some things that have been harder than others, but even small trials seem harder to bear when there are big trials challenging you every day.

If you only want to read about the happy stuff in my life, scroll down....way down....

On the other hand, the article Your Painful Story Brings God Glory, by Laura Story, is what pushed me in the direction of sharing my struggles here.  I hope that reading what I have and am going through will help someone in some way, even if this post isn't an "I've made it through this trial" kind of post.  This is an "I'm in the middle of trials, but I know that God is here with me" kind of post.

In my last "real" blog post, I shared with you that Jessica and Jon had received a diagnosis that their little baby had Trisomy 18, or Edwards Syndrome.  Walking this road with them has been the hardest trial in my life thus far.  I watched as my precious daughter purposed to love Matthew and appreciate every day they had with him, never knowing when his last day might be.  I was privileged to go with them on several of their trips to Seattle to see specialists at both the University of Washington Maternal Fetal clinic and the fetal echo-cardiograms at Seattle Children's Hospital.  

Due to the generosity of a friend, they planned outings to make memories with Matthew on each trip!  I was able to go to the Woodland Park Zoo and walk around Green Lake.  We had lots of fun as we tried different ways of including a tiny little pajama outfit in photos to show that they were making memories of their journey with Matthew.  Jessica and I were busy knitting and crocheting everywhere we went.  She made the most beautiful little sweater set and blanket and I was working on some cocoons. There were highs and there were lows, good days and bad days.  Sometimes I grieved for myself and the grandson that I had hoped for, other times I grieved as I watched my daughter walk through this valley.  

Just over a week before they were scheduled to be induced, Jessica couldn't find Matthews heartbeat.  They had a borrowed doppler so she could listen for his heartbeat each day, especially if he was not moving.  They heard his heartbeat that morning, but after a nap they listened again and it was gone.  They headed to the local ER to confirm and found that Matthew had passed away.  Then they packed up and headed to Seattle to be induced.  I joined them the following morning after a sleepless night.  The induction lasted from Sunday night until just after midnight on Tuesday.  She was laboring most of the time, but the labor had times of intensity as well as times of rest. 

As her mother, it was so hard to see her labor in grief.  As a grandmother, it was hard to know that my first grandson would be born sleeping.  The silence of a labor room without a fetal monitor was profound.  More profound even was the moment of his birth.  As he was laid on Jessica's chest, I kept waiting for him to move, to cry, to live.  But that moment never came.  The intensity of this hour was nearly more than I could handle, I cried out to God to comfort them,  I grieved so intensely that physically I was falling apart.  I came very close to fainting, so I left the room.  I did not want to draw attention to myself. Their moments and memories of Matthews time with them needed to be about them, not me.  I figured that the nurses could scrape me off the floor in the hallway if needed.  I was able to make my way to a bathroom far from their room and cried my heart out in wrenching sobs. I have rarely cried this hard in my life. After a time I was able to go back to their room and marvel over Mathew's beauty.  His perfect little facial features, his tiny little hands.  Watching them lovingly and carefully dress him and wrap him up in a soft white blanket.  I stayed with them for a few hours, taking photos and listening to them and I even got to hold him for a while.

 So precious, so loved, so tiny, so still. 

Jessica has blogged about Matthew's birth in detail, if you want to read it go to her blog, Matthew's Life.
My sister, Lisa, lovingly made this photo collage for Jessica and Jon

Daryl came down to Seattle and arrived mid morning, and we were to drive our separate cars home, but together as I had not slept since Sunday morning and it was now Tuesday. I made plans with Sam, my daughter-in-law, and Cindy, a dear friend, to go to Jessica's apartment and do some cleaning there. In the weeks before Matthew's birth, Jessica had been sick with a fever for over a week.  I wanted them to come home to a clean apartment and have dinner waiting for them there.  The plan was for me to take a nap and then do the cleaning....but I was still unable to sleep and, by then, unable to stop crying.  I made a call to my doctor's office and requested sleep aids, which they did prescribe for me and have been invaluable to me since then, but I only use them occasionally.  I just could not make my brain shut down and when I tried to sleep, all I could think of was Jessica, Jon and Matthew and then I'd start crying again.  Working was therapeutic and I was so thankful for the presence of Sam and Cindy. Talking with them was so good for me. I stuck around until Jon and Jessica arrived, then ran a few errands for them, including buying Jessica a pretty, comfy nightie to wear as well as some pajamas for me - I had found rayon pajamas on a clearance rack!  It was such a blessing to me and to her as well.  Then I headed home and was finally able to get some sleep.  Over the next few weeks, I helped Jessica as best I could as she recovered.  She had a difficult recovery due to the long, difficult labor.  It was good for me to do this as it also helped me to begin to grieve as well as gave me some time away from home to rest and recover as well.  

Matthew's graveside service was held soon, and he was buried just inches from where our daughter, Johanna Marie, was buried.  There was something very special about God orchestrating this.  That day was also very hard.  To watch my daughter walk next to her husband as he carried the tiny white casket to the hole in the ground, and then later to watch as Jon and Daryl lowered the casket by hand into that deep, dark hole tore my heart. 

During those months of Jessica's pregnancy, Matthew's death and birth, I struggled in many ways. 

Physically I was challenged through sleep deprivation.  Christy had been put on oxygen at night to support her heart and lungs as she still has sleep apnea, and the echo-cardiogram had revealed that she has an un-repaired ASD.  She did not, and still does not, like wearing a nasal cannula.  She would fuss and cry.  Esther is very sensitive to her crying and it upset her.  If I was not in the room and Christy was fussing, Esther would first go to her crib and try to comfort her, saying over and over, "it's OK, it's OK."  Then she would come to my door and knock until I came out and cared for Christy.  This led to my staying in their room each night until Christy fell asleep...which was invariably after 11 pm.  Starting back in January, when I had been with Christy at Children's Hospital for her sedated dental work and MRI, I had aggravated my knee injury and did something to my back.  After a few weeks on crutches, my knee found a new happy place, however my back did not.  I mostly ignored my back pain until I couldn't stand it, then I'd go to the chiropractor and get adjusted.  I was dealing with back spasms every night, I just didn't know it.  I had also been struggling with what we though was an ulcer (since my ER trip the previous December), but just couldn't/wouldn't find the time to get a proper diagnosis.  Add to all that the daily stresses of caring for a large family and Christy's ongoing medical challenges.  Matthew's birth/death caused me to reach a physical crisis.  My stomach was raw, my back was causing nearly constant pain, and I was definitely dealing with adrenal fatigue as well.

Emotionally I was into uncharted territory for me.  I was a mess.  On top of grief and daily stress, I was dealing with imbalanced hormones.  I felt fragile.  I was definitely falling into depression.  I was having moments of something like panic attacks.  I was coming unglued so to speak.  I felt like if some new trial came, I would just break. I forgot to mention that this past summer, in August, I learned that a friend, Diane, with whom I had been extremely close for many years (but had drifted apart from her over the last 10 years or so), had committed suicide.  This was definitely also an emotional stress as I was grieving the loss of a friend and had many regrets of having allowed our friendship to dissolve.  We had been in contact occasionally, but hadn't connected as friends in many years.  As my emotional state began to deteriorate, I began having dreams about her, and this was adding fresh grief to my already unstable emotions.

Spiritually I am also a mess.  I allowed Matthew's diagnosis to derail me spiritually.  It's hard to describe, but it was like I had the spiritual reaction of how a child would react to getting a shot.  I recoiled.  I curled into a ball and refused to come out.  It is so hard to describe.  It's almost like I held tight to my grief, yet ignored it.  I hurt to badly I couldn't face it.  It felt as though God had hurt me.  I know this is not true, but that is the best way that I can describe where I was.  After Matthew's death and birth, it got worse.  My pain was so raw, my strength so low, that I just couldn't go there.  My quiet times were few and far between, and my prayers were too.  I knew I needed to reach out to God, but something inside me was not ready to let go.  I think it was the beginning of November that I knew something had to be done.  I made an appointment with my pastor.  I shared with him my ongoing struggle to get sleep as well as my spiritual situation as best I could.  I knew I needed to dwell on who I believed God to be, to remember His promises to me as His child.  When I got home I looked through my bookshelves to a devotional that Pastor Mark had recommended and that I knew I had.  I was unable to find it but I did come across a book that I had no idea that I even owned!  Some time, I have no idea when, this book came into my possession, but I had "shelved" it.  It is a book by Kay Arthur, "God, How Can I Live."  I knew that God had meant for me to find this book at this exact moment.  That in and of itself was more comforting that I can tell.  Since then Pastor Mark has also given me another book that also has been very helpful, it is called "New Morning Mercies" by Paul David Tripp.

Here are some quotes from "God, How Can I Live" that have been particularly helpful:

"Thus (after quoting James 1:13) when adversity comes into your life, precious one, you can rest in the fact that first it had to be filtered through His sovereign fingers. And those are fingers of love, for God is love...."I can't understand it. It doesn't seem fair!" Is that what you are thinking? Remember, God's ways are not your ways, His thoughts are not your thoughts. Faith submits, taking God at His word and resting in His Character."
And after talking about Job chapter 1:
"O precious child of God, are you in great travail of soul because of some adversity? Fear not! Your Father is filtering it all through His fingers of love....Trust in Him, and it will result in good."

Do you realize what peace would be yours if you would only believe what God has said and bow your knee in humble, trusting thanksgiving. Then you would cease replaying bitter memories of horrible days gone by - days that have been overruled by His promises and His sovereign rule. With a touch....they have been turned to good - your eternal good.....May God grant you the blessed ability to see all of life through the prism of His infallible word.

Our tragedies are permitted for two reasons: that we might become more like Jesus and that others might see the reality of our God and long to know Him as we know Him. 2 Cor. 4:11
The more trials we experience, the more we become like Jesus, if we appropriate His grace. Therefore, all of life, whatever it brings, prepared us for eternity.

I wanted to share my journey with you now, before I am on the "other side."  In the past I have always blogged about good times, fun memories and such.  But I think it is important for people to be transparent when they are going through trials.  Reading about Kay Arthur's trials and hearing of trials of others can be comforting, especially when you hear how God is comforting them in the midst of their difficulties.  Since that low point in November, I have been working to find the source of some of my difficulties.  I have found some things that have been helpful, but if my lowest point was a minus 10, and being strong and healthy is a positive 10, and being just OK is zero, I vary between a -8 and a -4 now.  It doesn't take much ( a few bad night's sleep for example) and I find myself crying whenever I am alone, again.  I have days where I can feel God's presence, but most days I still feel that I am in a spiritual battle ground and that I am losing the battle.  Since my low point, I had taken a fall (literally) and have aggravated my knee injury.  My back pain reached epic proportions and I ended up going to the urgent care clinic.  I have since been on 12 hour prescription pain meds, muscle relaxants and I am now going to physical therapy.  My chiropractor and my physical therapist have been able to get my back into alignment, but it goes back out easily.  My L5 disc is the source of my problems, and needs to heal.  I can't sit in church or in an upright chair for more than a few minutes without my back going into spasms.  Also, my stomach is still causing me pain, mostly at night but also when I am upset about anything (for example, my back pain often causes me to feel nauseated which leads to stomach pain...).  I had an endoscopy done and the preliminary result was erosive grastropathy...basically the lining of my stomach is eroding away.  I won't know the cause of this (it could be viral, bacterial or just the result of constant stress) until the biopsy results come in. But there is some comfort knowing that my stomach pain is not my imagination!  

For the first time in my life I am dealing with multiple physical ailments, two of which are the most debilitating I have ever had (my knee has been worse before).  Any of the three can cause me to not be able to sleep or function at a normal level during the day.  I am also dealing with anemia (could be caused by my stomach problem as it can inhibit absorption of nutrition) and low immunity/recurring infections (7 rounds of antibiotics in the last 8 months, two for a jaw infection after getting a tooth extracted, the rest for recurring sinus infections).  I take dozens of natural supplements to try to help with these ailments, but I don' seem to be making any headway (I am currently on antibiotics again...).  Emotionally I am still up and down....sleep deprivation plus grief as well as dealing with nearly constant pain can really get me down at times, especially at night.  

Wow, this is such a downer blog post!  Oh - and I forgot to mention that Dayton (11 years old) had his appendix burst and had emergency surgery on Thanksgiving Day, and spent four days in the hospital!  He is doing great though.  For that I am more than grateful!  Daryl was able to stay with him nearly the entire time, as I was still dealing with my latest sinus infection.  And, we have had two stomach bugs run through the family as well as two different colds in the last three weeks.  Currently all four little girls are sick with a bad cough, Carese is the worst at the moment, running a fever all day yesterday. Christy showed signs of coming down with this cold yesterday.

I hope to blog again regularly and keep you updated as to what God is doing in my life.  I keep reminding myself of what I believe about God:

God Loves Me, enough to send His Son to DIE for me!
God knows what is best for me
Every trial comes into my life after it is filtered through His loving hand and is for my good and His glory.
God has this - He is in control, nothing surprises Him. 
God has a plan for my life and my family - to prosper me and not to harm me

I know that my heart will follow where my mind is, so I know that if I dwell on the truth of God's love for me and His promises, I will eventually begin to feel it in my heart and soul once again.

***You MUST read my blog post, Into Darkness and out by Grace to get the whole story...all that you just read did not bring me out of the darkness and depression, it only gave me a short, partial relief...I went back under. But the story doesn't end there!  PLEASE READ!***

So - time to look at the bright side of my life! In the last 8 months, there have been some good times.  


In July I got to spend the day with Jonathan, riding in his big truck!  It was a fun day, and I was surprised how different things look from 10 feet off the ground!  It was also enlightening what truck drivers have to deal with and I am more considerate of semi-trucks on the road now!


Last July we had a work party here where friends came over and helped us put more of our land into lawn, paint and clean up the front of the house to prepare for a new appraisal in hopes of getting rid of our mortgage insurance.  It did pay off - our appraisal came in around $30,000 higher than the last time!  

While we weren't able to do exactly what we had hoped, we got to do something even better - refinance our mortgage, with a lower interest rate and cut out three years (went from 23 years left to a 20 year mortgage).  Our monthly payments will be lowered by roughly $400/month.  We close on our new mortgage in just over a week from now!

We started watching Once Upon A Time (OUAT) last summer, and found out that it is filmed just across the border from us!  I have been able to go to Steveston, B.C., AKA Storybrooke, and watch the filming three times now. 

The last time I got to meet Robert Carlyle (Rumple Stiltskin in OUAT, as well as a villain in a James Bond film!), get a photograph with him as well as getting his signature on a OUAT playing card that I bought in Steveston! 



 We had a party at the boys' apartment where we all chose a character and dressed up, then we streamed the season premiere!  

We had a great time, but Carese was a little freaked out at my "new look"!  Daryl still dislikes the photos of me dressed as Regina/The Evil Queen!  LOL!  Rebekah dressed as Zelena was the most accurate and mind boggling imitation!  Zelena is the Wicked Witch from Oz in OUAT.

Christy Update:

Christy celebrating her 5th birthday, August 5

Christy standing
all by herself!

Christy had some testing done in October.  Her echo showed the same as what we saw last spring, so that's OK.  Her hearing test showed that she has perfect hearing. Her MRI showed that her brain and its vessels are stable, and that was very good.  

Christy LOVED being in the pool this summer!
She also did great camping for an entire week!

We have now finished all the testing that needed to be done since she came home.  She will only need to go to Children's for periodic evaluations for neurology and cardiology and possibly dental work.  She had a dental exam this fall and her teeth looked great!  She even lost her first tooth about two weeks ago! I was not expecting that to happen already! She just doesn't seem old enough to lose teeth, but at nearly 5 1/2, she most certainly is!  

She continues to be a daddy's girl, but does snuggle with me on occasion!  She has recently began to put her left arm through her sleeve when she is getting dressed, and this is a huge milestone for her...she has always made getting dressed and undressed as difficult as possible.  

She now has a stander (she needs to be bearing weight to build bone mass and core strength. We found out this summer that her hip sockets are not fully formed so she is at risk for dislocation), a walker (on loan, but one has been ordered for her) and enjoys running around the house in it. 

 We also got an adaptive stroller for her since she has outgrown most strollers now - she grew 4 inches in the last year!  I also just sent in an application for handicapped parking permits and I am looking forward to being able to park closer to buildings when I have her with me!

Esther has had a very healthy summer and fall.  She has weathered a few colds.  She continues to communicate through sign language, but she knows hundreds of signs now.  She understands everything you say to her.  She loves to sing, especially songs in movies like Frozen!  She LOVES Once Upon A Time, especially the bloopers!  She will imitate every motion from those and it's hilarious!

Other milestones in our family:

Rebekah got her driver's license this summer, Rachel is working on getting hers.  Both girls are working a temporary job for the holidays, working for a former classmate of one of my siblings, at the Lights Of Christmas at Warm Beach.

Reuben has been working at Perry Pallet since early spring and will probably get his driver's license this week. 

Reuben and Rachel are gearing up for another great season of Bible Quizzing and both hope to be able to go to Nationals again this year!

Daniel is growing like a weed and has become my right hand man at home since Reuben is gone so much.

Dayton is doing better in school this year and loves to play with his Legos

Elizabeth is going weekly to a friends house and gets to ride horses!  She loves this!  She is a big helper for me, especially right now with the big girls gone on the weekends!  She got braces earlier this year, but has them off already and has a special retainer that is helping with her lower teeth.

Carese is growing and is such a big talker.  Some of the things she says are hilarious!  She is a climber and seems to always have a bruise or two from falling while balancing on something!  She is such a mommy's girl.  She loves to go places with me, but gets panicky if she thinks I am not at home.

We've had some good times in the midst of our hard times, and for this I am so thankful!  I have so many blessings to be thankful for.  It's hard for me to share hardships, and to share with others when I am hurting, especially when I am in the midst of things. I love to share how God has worked in my life in the past and how He has done wonderful things and shown Himself to be faithful.  It seems like I am so slow at growing in Christ when I can still be so slow to run to God.  I am re-reading Stepping Heavenward for the eighth time now, and find such wonderful truths there, as well as challenges to look to God and focus on living for Him each and every day.  I fail so often.  Elizabeth Prentiss, the author of Stepping Heavenward wrote the hymn, More Love to Thee.  Her little novel and all her written works prove that this was her goal in her life.  I want to make it mine, but I seem so often to forget that I even want to love Him more, and end up being self absorbed and throwing my own pity parties.  More often of late, especially when I can't sleep at night, I am crying out to God, and I know that this is His doing, His calling to find comfort in Him.  For He is the only true place of comfort.

So, if you think of me and my family in the weeks and months to come, please pray that we will all seek Christ, run to our Father, bend our wills to His, and above all to bring Him glory through it all.

Eight Weeks Home, Christy Update!

Taking a nap at the park just last week!

I am shocked and surprised at how different her second month home has been from her first month home. Christy's first month home was mostly spent at home, where as the past 4 weeks have been insanely busy!  I am also shocked at how badly I did at taking photos of Christy (or anyone around here for that matter!).  I will have to do better!

Christy had an appointment with the ENT (Ear, Nose and Throat) specialist.  He said that someday she'll probably need her tonsils and adenoids removed since she does snore often, but that she felt that she was on the small side and thought waiting was the better choice, but also said that we might consider getting a second opinion at Children's Hospital in Seattle.  We talked it over, and due to her sinus congestion waking her more and more frequently as night, we feel that she needs to see the ENT at Children's.  This referal has been made, but I have not gotten an appointment yet.  After seeing the ENT her pediatrician wants her to also have a sleep study done.

Christy giving one of her goofy silly looks - this was taken yesterday

A couple days later Christy got to go with us to a local park to play with friends while the big people played volleybell.  Christy did so very well there, but did NOT like the swing (you know the one that is like a bucket with holes).  She was happy to hang out in her stroller or play on the grass.  She did manage to get over into the sand, but this mean mommy took her out before she could eat any!

The next week was very busy for me (Esther had a pre-surgery appt at Seattle Children's) and our family (we had a stomach illness run through about half of the family, but just one or two people at a time).  Christy had her first Physical Therapy evaluation that week too.  We found out at that appointment that it would be best to wait to get braces for her legs (to limit the range of motion as her knee are double jointed) until after she has learned to crawl.  As long as she is not weight bearing, she will not be damaging her knees.  Once she has learned to crawl, then we will be getting her braces to wear when she is practicing/learning to walk.  We have some exercises to do with her now to strengthen her legs and arms to prepare for crawling.

First time in the pool....

We had a busy Fourth of July weekend, with relative from out of state visiting in the area.  Christy got to go the beach for the first time, but it was very windy and she didn't like it at all.  She just wanted to be held.  Then we went to a family reunion (Daryl's family) at another park and she did much better there, but like best to be in her stroller.  

Last Tuesday we went to another park (Esther's Physical Therapist has recommended that we take her to parks frequently to help her built coordination and strength - and it's working!).  Christy was tired when we arrived (it was lunch time) so she took a nap in her stroller - first time she's ever done that!.  Someday I hope that she will begin to be able to explore parks, but right now it's really hard since she is limited to scooting around on her bum, and she puts everything in her mouth (a really bad combination since she has a very poor coughing ability so choking is a very real hazard for her - even here at home).

She Loves It!

Yesterday Christy was evaluated by our favorite speech therapists, Elaina.  We were greeted with excited hugs as we haven't seen her in a long time (Esther and Dayton both have seen her in the past).  Elaina confirmed that Christy does have some eating coordination issues and is also concerned with me that she is not gaining weight very well yet.  She has given me some things to do with Christy during meals to increase her awareness of her mouth, work towards self feeding and learn to drink thickened water from a cup.  I am also teaching her to sign "eat" and will work on saying "eat" and "water" to her when I am feeding her.  Elaina really wants to see her regularly but has a long waiting list.  They are going to try to get her on the schedule soon.

And Esther Loved having her in the pool!

Yesterday Christy experienced our pool for the first time and she loved it!  She loves taking a bath, but I wasn't sure if she'd like the cooler water.  But we've had an unusually warm summer so the pool isn't too bad.  She will definitely be following in Esther's foot steps and become a fish.  Carese, on the other hand wants nothing to o with the pool!

Christy has been staying at home more recently, but that is going to change as she has lots of appointments in the next few weeks - her dental evaluation at Children's. Physical Therapy once a week, plus our annual week long camping trip!  Plus we will making more appointments for her dental work and seeing the ENT.  

My baby girls, in PJs but not ready to go to bed quite yet!

Overall, Christy has been exceptionally healthy and has adjusted very well to our home and life.  I have found that she enjoys shopping when she is in her stroller.  Generally speaking, away from home her safe place is her stroller.  At home she loves to explore and even enjoys spending time in the yard and swinging on the swing set (in HER swing of course).  She gets lots of attention and enjoys play.  Hearing her laugh is just THE BEST!

 She also allows me to hold her hands together when I pray with her at betime - before she would resist and get mad at me!  The funniest thing is that she LOVEs to get dressed and undressed.  She giggles and giggles.  I will have to videotape this somehow.  She is getting very fast at scooting up to someone and raising her arm(s) to let them know she wants to get picked up.  She will even chase you down if you are avoiding her (for fun, of course).  

All tucked in and ready for bed!

She is a very content little girl.  She rarely cries.  She usually has more of an angry cry when she gets hurt or is in pain.  It is a strange cry - almost animalistic.  Its almost like a panic kind of cry.  It is very sad to hear and really hard since we quite often do not know the cause - she just can't tell us.  Even when we know the cause (like if we see her fall over and bump her head), it's hard because it's almost as if she doesn't understand how to receive comfort.  But she is improving in this area somewhat, and I'm sure with time she will come to understand and receive comfort from us.

 Christy and Carese are nearly identical in size.  Six weeks ago we found out that they were less than 1/4 in different in height and less than 3 oz different in weight.  Christy really has not grown noticeable yet so they are still like twins.  They wear the same size clothes (you can notice that Carese is wearing the same PJS that Christy is wearing in one other photo).  For a while, all the winter clothes were put on Christy, and the summer clothes on Carese.  But as the weather has warmed up, I am dressing Christy in lighter clothes so they are being dressed more similarly now as a general rule.

And now for two videos!  The first one was of Esther and Chrisy playing together, really for the first time.  This has been the biggest change in Christy's life in the past month.  Esther no long ignores her and actually loves to play with her.  At random times we will find Esther sitting down next to Christy and just giving her hugs - it is so sweet!

The second video is ground breaking stuff!  Christy is slowly but surely gaining more use of her right leg/foot and arm/hand!  In the last video, you will see her use her right hand/arm to shake a rattle!  We did have to put the rattle in her hand, but she kept it and moved it enough to create sound, and she knew she was doing it!  This is miraculous!

Christy's First Month Home!

Two Feet on US soil - a new US citizen!

Oh my, time flies!  I can not believe that as of this week, Christ has been in our home for a month!  Her first day in our home was May 18.  She has done so very very well in adjusting to our home!  She even acclimated to our time zone within days - faster than I did, that is for sure!

 We have been very busy settling in, finding a new routine that works for now, and getting her the medical diagnosis that we felt were important - here's a list of appointments she's had and what we found out from them:

Carese - the binky caretaker

May 20 - Pediatrician - basically got her height weight, updated our Dr with her new medical information and got her file started and a general look/see for her doctor and her.

May 22 - University of Washington Adoption Medical Clinic (3 hour drive each way!) - Dr Davies got her weight height and looked over both Christy and her latest medical documents and got referrals in place for things like cardiology, neurology, speech and physical therapy evaluations being top priority, Ear/Nose/Throat  evaluation, eye sight and hearing are all on the list too, only not critical.   She also had a myriad of blood work drawn and tested as well as stool cultures done.  So far everything has been great, with the one exception of a Vit D deficiency (we are giving her 1000 IU/day now).

She wasn't too sure about grass, but she warmed up to it!

May 27 - Pediatrician - checking Christy for cold symptoms, but mostly discussing the findings from Dr Davies and discussing referrals needed. She also got to watch Christy drink from a tippy cup and put in the feeding referral right away...told me to only feed her foods from a spoon until then (thickening everything to pudding consistency to be on the safe side).

It was hat day, or something!  Carese wanted to do whatever
Christy was doing that day!

Starting the next day, a virus passed through our family - Rachel, Elizabeth and Carese with high fevers, and I got tonsillitis, the worst case that I can remember (it really took me over a week to finally have no pain)!  Esther and Christy did not get sick at all which was totally weird!

Too stinking cute!

June 3 - Seattle Children's Hospital Cardiology/Echocardiogram -   I finally got all the answers - Christy did no only have an ASD correction like her earlier documents had said, but a very complete open heart surgery - they repaired an ASD, a VSD and an AV Canal defect.  They basically reconstructed the middle of her heart.  The echo was not as clear as they would like, but she feels that the surgery was very successful that she will not need any further repair work.  We are to bring her back in one year from now.  That was a very good sign!

Playing at her Neurology
Appointment

June 5 - Neurology - after reviewing her medical files, and observing her clinically, the pediatric neurologist has determined that Christy has brain damage.  This could have happened either when she was born (traumatic, fetal distress induced emergency C-section) or during her open heart surgery.  If it happened at or around the time of birth, then it is called "Cerebral Palsy" but if it happens later in life they refer to it as a "stroke."  Either way, it is a stable diagnosis (that means it is not getting progressively worse) but it is permanent.  At the same time she did agree that it was very promising that we were already seeing her use her right hand and arm more and more since we brought her home, and with therapy and the blessing of a home and many siblings to play with, she has great potential to gain more use of her right side and she believes that she will be able to walk someday too!  So that was great news, but I did shed a few tears as in my heart I had really hoped that it was just some pinched nerve that adjustment/surgery would correct.

All 4 in matching PJs!

June 8 - First time we were able to bring Christy to church!  She did great and we had a wonderful time introducing her to our church family.  She would not make eye contact with strangers and got a little stressed if people wanted to touch her, but she had no panic attacks and we were even able to stay after the service for the potluck!

Favorite toy - her own foot!

Jun 10 - On the 5th, I finally got a good look at Christy's teeth and immediately made an appt to see our pediatric dentist.  On this day my suspicions were confirmed.  Every molar had as least two cavities (one above each root) and she needed work done right away.  She has been referred to Seattle Children's for this and has a consultation scheduled for the middle of July, but she is on a cancellation list, so hopefully we can get her in sooner. So far no abscesses, but I am to keep and eye out for that and brush regularly.  She does allow me to brush her teeth, but I can tell that sometimes it hurts (she winces).

First Sunday going to church - all in
Matching dresses (all of which came
from a consignment store!)

That was the  last appointment so far, but in the next month we have the following:

(I have two appts for a new crown as a tooth broke last summer and last weekend it broke further...)
June 24 - ENT
July 1 - Esther's pre-surgery consultation for her dental general anesthesia procedure
July 3 - Christy - Physical Therapy Evaluation (hoping to get a referral for braces and her knees bend backwards to an alarming degree)
July 11 - Christy - Feeding Therapy Evaluation
July 15 - Christy - Seattle Children's Hospital - dental consultation
July 17 - Esther - Seattle Children's Hospital - dental surgery

Good night mommy!

So we have a busy month ahead.  We still have some things to schedule yet, but they are not urgent (like vision).

Matching PJs that were given as gifts from
Two different people in two different states!

As far as Christy's integration into our family - it has gone so very much better than I even hoped!  She really had no problems with our busy home, except occasionally if played with too long she would get grumpy, but would recover if she got some time by herself.  She loves to scoot all around the house exploring her new environment.  She continues to love reflective surfaces like our kitchen appliances. We have definitely had to do some "baby proofing" in the home, especially since she loves to put things into her mouth - she loves to chew on paper, plastic and other things....but yet she spews out things like Cheerios and Kix - go figure!



Here are some videos that I think you'll enjoy!

Christy at the UW appointment, having a great time waiting.  She LOVES mirrors, can you tell?

This was just two days ago - this is her right hand/arm that has pretty much been useless.  When we visited her last fall, she could only move it occasionally and it was usually to get you to stop messing with it.  This is purposefully using it to experiment with the toy!  This is miraculous!

This last video was taken that same day, only at bedtime.  Esther has pretty much ignored Christy until very recently.  We noticed that she showed jealousy for the first time just last week, and it was when she saw that Reuben was spending time with Christy and Reuben is Esther's favorite person.  Then, on this evening, she was actually playing with Christy on the floor and they were laughing together.  I thought it would stop when I took them to bed, but I was wrong and I was able to take this amazing, sweet video of them playing together!