Showing posts with label children with special needs. Show all posts
Showing posts with label children with special needs. Show all posts

Saturday, July 12, 2014

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!






Thursday, June 19, 2014

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!



Wednesday, June 11, 2014

Bringing Christy Home, AKA Overcoming Obstacles One by One!

Our wake up call actually came when we were both awake already, which was surprising since our wake up call was at 3:45.  We needed to meet the cab at 4:15 and we were hoping to arrive at the airport before 5 am.

I needed to take some things down to the front desk and we needed the suitcase trolley.   When I got out of the elevator I found the lobby full of men in the boxer shorts...Yeah, not what I was expecting AT ALL.  Approximately 20 British drunk rugby players. Talk about awkward.  But I could not wait - we had a deadline!  So I forged ahead and placed the items behind the desk and tried to get the one hotel staff person's attention.  It wasn't happening.  Here I am trying to not look at all the (basically) naked men in the room, and yet I had to take care of our needs.  So I made my way up to the bar (it's open in the lobby), much to cozily between two of these Rugby players and asked if we could get the luggage cart.  But he just could not get past the language barrier/noise level to understand what I wanted.  I did the best I could and then felt it was time to abandon the attempt and get out of there before anything really embarrassing happened.  So I turned to go towards the elevator, but to my great dismay, there were already several nearly naked rugby players in the elevator.  Needless to say, I was NOT going in there!

So I headed to the stairs and went up two flights.  At that point I checked out the elevator and watched to see what floor the elevator went to - of course it was the 6th floor.  So I gave up completely and went up all 7 flights of stairs.  Then we got everything ready to go onto the luggage cart, and still no luggage cart, so we gathered what we could and Daryl headed down to see what we could do.   Everything is kind of a blur now, but eventually we got the bill paid, the luggage in the cab and avoided any further encounters with the naked rugby players, except for hearing from the hotel clerk that they had broken into fights in the hallways and upset other guests and we could still hear them outside through the upper floor windows.

So we are finally in the cab with the grumpy cabby who can only speak on word in English, "No."  All settled in, Christy in her car seat and all our luggage in the back.  Then the cabby tries to start the cab and the battery is dead.  He tries again, same result.  After a couple more tries, the cabby gets out and heads to the hotel...Daryl and I are fervently praying now as we are already leaving much later than we had hoped!  Soon the poor hotel clerk is coming out, following the cabby - they are going to do a push start (the street ahead of us is slightly downhill) as, thankfully, the mini van type cab is a stick shift (unheard of in the US, but common over there!).  Just as we get to the end of the block and the down hill section the cab finally started...we both breath a sigh of relief!

The next hurdle was that we were unable to determine which terminal we needed to be dropped off at.  So he took us to Terminal 1.  We got there and got unloaded and fixed up out luggage so the two of us could take it all with us, which was a lot - 3 large check in, 2 carry on, a car seat in a bag with a shoulder strap, three "personal bags" and Christy.  Thankfully two of the check in bags and my rolling backpack had piggy back straps and that made it possible, but it was difficult to manage so we wouldn't want to have to go very far.

Once we got into the terminal, it took a while to figure out where we needed to be, but eventually we got help and determined that we actually needed to be at terminal 2!  And because of our early flight, there were no shuttle buses available and we would have to hire a cab.  This was a problem as I had spent the last of our Bulgarian cash...but there was an ATM and I got out 50 leva and we went back outside and hailed a cab...everything back in and off we went.  Once at Terminal 2 we unloaded and paid the cab (only 5 leva...how was I going to use up the rest???).   I was able to get preferential treatment due to traveling with a child - no waiting in any lines - skip to the front at check in, security and at the gate.  This was really what enabled us to even make out flight as by now we were running quite late and the airport was surprisingly busy (it was a Saturday morning).  We did find that the first flight would not allow us to use her car seat, but they did allow us to check it at the airplane so it would be available for the rest of the flights.


Our first flight went really well.  Christy did so much better that I had dared to hope - she sat in her own seat with just the seat belt like she had been doing it all her life!  She was so good and seemed to enjoy the flying experience even!

Our first layover was at Heathrow, London.  It was a long layover, and good thing.  We accidentally went through customs and ended up having to get our gate tickets reprinted and go through customs/security again.  We just took it slow and got through everything eventually.  We still had about 30 minutes to wait until the gate was announced and then 30 minutes to wait at the gate, so really it went very well.  I was able to exchange the Leva to Pounds and had enough to purchase a nice lunch while we waited for the gate to be announced!

The next flight was the longest one - 7 + hours.  To us this was a late afternoon evening flight so Christy took a long nap during the earlier part of the flight.  When she woke up she was quite upset.  I applied peace and calming oils and some peppermint (her nose was very stuffy) and then went to find a bathroom to change her diaper.  It took a while to find one that had the changing table and she was fussy the whole time - I was beginning to think the rest of the trip was going to be a long one!  One in the bathroom, the minute she was in a dry diaper she was back to her happy self and even making herself laugh right there in the bathroom!  The rest of the flight was spent trying to entertain her in the dark - we tried a glow in the dark bracelet, but she bit a tiny hole in it...so I cleaned out her tippy cup and put it in there and that worked.  I also had a spinning light up toy that helped a lot too.  Soon we were preparing to land in Philly and beginning to stress about collecting all our luggage and going through customs AND immigration and then back through security and we only had just over 2 1/2 hours.  Everything went as planned, with a couple of exceptions....

When we went to go through immigration, we were told that everyone would be served in the order that we came in.  That was not what we were told - we had been told that as US citizens (and Christy was a US Citizen as soon as we got on US soil) that we would be moved to the front of the line and processed immediately.  I explained this to the gum chewing agent (he seemed to have a superiority complex like someone from a movie or something) but he said no exceptions.  So we sat not so patiently waiting for our turn (there were about 10 files ahead of ours).  Eventually a new agent showed up and we could hear the first agent asking if what we said was correct, and yes, we were right.  So only after about 20 minutes of suspense we were processed quickly and moved on to collecting our check in luggage so we could go through customs.  Due to our delay, all the luggage was already off the conveyor belt.  But one of ours was missing.  We eventually found out that we would have to file a claim in Seattle and moved on.  Customs was a breeze, really nothing at all.  Security was a long line and we were not allowed to move to the front.  Eventually we made it to our terminal and we actually made it in time.  They had begun to make announcements, but no boarding yet.  We thought about trying to grab dinner, but just didn't have time and hadn't seen any restaurants that seemed like a good choice for food, and neither of us were particularly hungry.

There was no priority boarding again for families with children/babies, and since we ended up loading later we were also not allowed to bring our carry-ons with us either.  We had to do some re-arranging as all the baby toys were in one of the carry-ons.  I do not recommend flying into Philly on an adoption trip, that is for sure.

Our last flight was 6 hours and had to be one of the biggest rip-offs of all our flights.  No in flight movies, no blanket, no pillow, no nothing!  We were given 3 opportunities to have the standard drinks (pop, coffee or tea) but there was no even one snack, and you had to pay extra for the meals.  By this time we were tired and a bit grumpy.  The plane was a smallish one, and the noise level was bad.  We were sitting right in front of the bathroom and all the sound from around us seemed to intensify off the wall behind us.  For us we had now been traveling for nearly 24 hours, but those around us were not so tired and there was a lot of conversations.  Daryl was able to sleep, and so was Christy, but sleep evaded me.  I had only gotten about an hour's sleep on the last flight, so I was getting pretty miserable. Eventually we made it to Seattle and we even beat the sun - the longest Saturday ever - 29 hours and counting by the time we landed!

But we weren't done yet....we collected our baggage, and then went to file the claim for the missing luggage.  Due to not being able to find the original first flight gate pass, it took over an hour to process the claim.  Finally we were able to tell Jessica to come and pick us up.

Christy had been a gem, and had only cried that one time on the second flight.  She played contentedly with Daryl while I was doing the missing baggage claim.  What a blessing.  I was so wasted by now, that it would have been very, very trying if she had been fussy at this point.

The only thing left was the drive home.  2 1/2 hours later, we were entering our home for the first time just 8 hours less than 2 weeks.  Only problem was it was 1:30 am at home, but our bodies were still on the other time zone, which was 11:30 am - so very tired from traveling, but Christy was no even remotely ready to sleep!  So Daryl went to bed and after a few hours we swapped places.




In the morning we had the wonderful privilege of introducing Christy to the family, and getting lots of loves from our little girls who missed us so very, very much.  Everything, every moment was something to cherish.  That day was like no other and God's blessing and grace were nearly palpable.  God had brought safely back home.

"Is she my sister"  "Yes she is all yours!"

Wednesday, May 21, 2014

Christy is Home!


I have been waiting to start blogging about our trip to bring Christy home until she was home as I was trying to protect my family - it's not a good idea to let the world know that your children (even adult children) are home without their parents.

She is totally a Daddy's Girl!
She is such a beauty!!!
To sum it all up, our gotcha trip was amazing.  Everything went quite smoothly.  We had some excitement (like lightening hitting very close to the hotel, and small explosion from a fuse box in the restaurant and 20 rugby players in their underwear in the hotel lobby as we left) and a few minor difficulties, but God carried us through and over all I feel so very, very spoiled by my Father.  Christy has been a little miracle.  She has adjusted to everything very quickly and we are watching her adjust to being loved on by her family and relaxing and gaining more use of her right side even!
Christy sure has a great personality!  This is her "I don't like this" look.
She never liked the stroller - we'll be working on that!

Over the next couple of weeks, I am going to go back and blog about each day and what happened and the difficulties we overcame and the blessings we had showered upon us.  I have TONS of photos and videos to share with you.

For now, I've put a few of my favorite from our trip here to whet your appetite for more!

I will be posting the details of the trip both here and on my adoption blog, A Seventh Sister.