Gyro-Stim update - Did it work?

That's the question we get over and over.

I just couldn't post

A part of me just didn't want to get my hopes up - I know that sounds odd BUT how many times over the last 4 years have we had some hope for it to be dashed.

In addition, his therapist had warned we were getting close to residential treatment.  I think deep down that thought scared me so much that I felt I was standing on the edge of a cliff and afraid if I breathed wrong we would go over.

BUT we have been long enough out of treatment, and past the mark where any brain rewiring would occur that I believe I can start to hope.

Even my very stoic husband looked at me one day and said "what happened to him."  Everything from Cav's voice to his facial appearance has changed.  Friends have noticed it, his teachers have noticed it, and most importantly the kids have.

In school he had no friends (not for a lack of trying on their part - they wanted to love him but he would be mean or hurt them.)  He had to sit by himself at lunch and in the classroom (again not a lack of trying on everyone's part).  And at home he never was able to play with the kids longer than 20 minutes before he was raging or someone was bleeding.  He couldn't be around our littles anymore without strict supervision because of harm he caused them.  Really, we were at a point where I was wondering if he had been better off in the orphanage - and that statement goes against ever fiber of my being.

In one word we were DESPERATE!

I have to admit that I am also MAD - how have I never heard about the vestibular system, why after all those therapies did no one treat that area?

ANYHOW - here is what our life looks like now.

We made the mistake of doing the process over Valentine's Day and a day off of school.  This was a disruption in our routine and lost some hope because he went back to his typical of stealing, raging etc.  In hindsight he always has had a hard time with holidays.

We ended the treatments in February (it was 7 treatments over 3 weeks.)

The beginning of March is when my husband made the comment - and try it was like having a new boy.  I even caught myself thinking - I actually like this kid.  He is funny and charming.

I went back and forth on what to do for our spring break - as we had the opportunity to attend a disability ski weekend.  Truly in the last 4 years Cav has not done much - he screams or rages every time we go out in public so we have found it better for him and our sanity to leave him home with a sitter.  BUT it broke my heart each time the trauma wore off of his latest action.  (and before you comment let me give you a visual - My very large husband having to carry a screaming chinese kid through IKEA where there is no quick exit, all the while he is flinging his titanium legs at anything he can get close too.  I am trying to calm the other kids and get them out. - NOT a fun Sunday afternoon for anyone.)

So we signed him up along with 3 of the other kids.  He had been acting so good.  And considering the circumstances he actually did pretty well on the trip.  We had some regression and hiccups.  BUT when we left to come home together I saw a change in him, a peace almost.  It's hard to explain but thinking back I am wondering if the hiccups were due to him being worried that he was going away for treatment.

Then we arrived home from Skiing and headed right into Easter - I do NOT know what it has been about Easter that has set this kid off - BUT he has never been able to make it to the family egg hunt.  He would be in his room raging by noon EVERY YEAR!  But this year he did it!!  It got to hunt for egg, and enjoy the whole day with the family!!

It has been 2 weeks since then and we still see a new kid.  It has been odd though - it's like he missed the last 4 years and is just now waking up from a fog.  Things he will ask are like a preschooler.  Socially, the mistakes he is making (primarily at school) again like a preschooler.  The lucky thing is he is grasping the rules and the why's and quickly accommodating his behavior to that.

Another blessing is the kids in his class are holding him accountable - God really has answered that prayer and the walls and boundaries are clear as day to him.

As for home life - he is not hoarding food for the most part.  He is finally grasping the fact that the fruit tower on the table is available anytime, as is the rice that is always in the cooker.  The greatest change is his awareness that there are others around him.  I almost sat int he driveway and cried when I saw him take Remy's hand, and gently guide him into the house.  In the past he would walk in front of others, knocking them over or even pushing them.

We still have a long way to go - but we are finding a boy we never knew existed.  One that wants to help, to be around the family.  A hard worker that also wants to go out and play with his brothers.  The best part is - he has had some consequences over the last 2 weeks for making poor choices.  He has been able to handle those and move on versus the downward spiral that would last weeks and months.

Although I didn't want to admit it - Gyro-stim changed our life for the better!!

A little glitch - well. . .

Ugh just as I posted last week about our little man - we got a phone call from the international adoption clinic - - at 5:30 at night (never good.)

I held the phone stunned - he had some positive test results.

The prognosis was not good.

Of course I was on my way out the door for school conferences.  I cried the 30 minutes it took to drive, wiped my tears and pulled up my big girl panties ( BTW apparently devastating news for one means you have the best conferences of your life for the other four LOL!)

Children's Hospital was able to get us in the super clinic (for very medically needy kids) within 3 days (this usually takes weeks or months) AND with the most amazing DR within TWO days.  This quote explained why the rush (notice the date).

And that's when we hit our little glitch LOL - We went for what I thought was a meet and greet ( 1 1/2 hours from our home) and we ended up being admitted.  It was really the only way to get the blood work, spinal tap, abdominal ultrasound, EEG, MRI and consults with every specialty in the hospital.

I had all of $20 and no working credit card with me (yes mother of the year BUT I did run to Target to get Remy's cups that he can drink from and a lovey - leaving me with $6 LOL).

The rush for Remy was we needed to start massive doses of antibiotics but you can NOT do that until you know what you are working with.  In our case, what he tested positive for has basically been iradicated in children since the 1940's to 1960's.  Most people had never seen a case in real life, and those that had, had seen the ravages of this disease in adults as they went mad.  In the US, mom's are all tested and newborns are treated immediately - to see this in an almost 5 year old well, not good.  It's a progressive disease (not contagious) which attacks the bones, organs and brian.

I wavered between being REALLY, REALLY mad at China (his file clearly states he was negative - everyone agrees this is impossible.) and so glad we had expedited and rushed to bring him home.  Even in the four months since we had him, we started seeing a decline, not in his amazing personality, but he was losing the few abilities he had - like putting his shoes on, or taking his sunglasses off and putting them in the basket.  I started noticing him standing there - like he knew he was supposed to be doing something but not being able to recall.  More and more we saw him standing with his hands clasped together like a grandpa - it was becoming heartbreaking.

When your child who is almost 5 functions at 14-18 months and you start losing skills you scream at the unfairness.  This child already has so much to deal with, his albinism makes him legally blind, he has no language except echoing, and now we are going to lose that too?

So although the admission was not ideal, I was glad to see we at least had some direction,  We saw every specialty from hearing, opthomology to neuro and genetics.

AND we saw that just maybe God needed us in that building at that time.  We were admitted through the ER so Remy could have a spinal tap done.  The Dr who did that - he is adopting from Bulgaria.  I was able to talk to him, to guide him as to why Remy doesn't cry when he gets blood drawn and to answer questions.

A friend texted me that they were admitting her son, he ended up having even more devastating news than we received (on a different timeline), I was able to hug her neck as she received the MRI results, alone and away from home.

And I got to teach a lot of medical people, and lots of students.  My heart is teaching - and Remy, he has several diagnoses that most people will never see in their entire career.  From his nystagmus, and even albinism, to his echolalia, and blood results.

AND that speck - yes that is a Ladybug on our window - 8 floors up - in November.  Only God!!

And on the 3rd day, after finally placing his PICC line, we were able to start his major doses of antibiotics - not some expensive designer antibiotic - nope the cure is penicillin.  A $5 drug that even an orphanage could have provided.  This treatment will hopefully stop the destruction to his body, but what has been destroyed - - well, prayer is our best option.

So four long days we spent in the hospital (which really was nothing but for the being unprepared with 7 other kids at home LOL!) Our village stepped up, feeding our kids, loving on our family, and bringing me coffee.  I have often have a very hard time accepting help - I can do this myself, in my best 2 year old voice, has been my mantra.

And the lesson God kept telling me - Let them Bless you, LET THEM HELP.  Just as YOU went to China to do my work, they are doing my work by blessing your family.

That, my friends, was my lightbulb moment.  I recently heard the best quote -
"Who are you to tell ME what a Blessing is?" -God

THankfully, I was able to convince the hospital that I still had my Nursing license and there was no reason we couldn't do the round the clock IV antibiotics at home with a PICC (central line).  We are still processing all that has come about - what this entails for our sweet angel, and our family.

I do have an overwhelming sense of peace.  I think because all of this, along with the craziness of our family was the proverbial last straw.  Although the back that was broken was my need for control - and with that God said -finally!

Christmas day

I think I forgot to mention we were blessed with a white Christmas here - almost a foot of pure white snow at our house when we got home. It was all done, the roads were clear and someone had snowplowed our long driveway!

One of the deals with my old slightly Scroogie husbands was that if we were spending most of December in chine he wasn't decorating. Fine, so I went and bought two little trees I had been wanting and some decorations specific for them in the future and decorated a small area in the living room. This was the perfect solution since we figured a live tree would be dead once we got home anyhow. Of course I missed the after Christmas sale for an artificial tree so I guess next year we get another real tree much to my husbands delight - truly!

We felt well enough to wrap the few presents and Some clothes I had bought previously for the kids. I even went as low as wrapping new undies for them - something my husband made me promise never to do since this was all he ever got for Christmas (hmmm might explain the Scroogie disposition but I'm still working on it!). Besides we left a trail of old undies and clothes in china and promised new ones when they got home;0)

The kids loved opening the presents and stitch was awesome at cleaning up - another positive orphanage behavior we like - see they aren't all bad!

****Note- he is 3 1/2 years old and we bought him a remote control car for 3+ years. He had no idea what to do with it. Between illnesses I did get to the store and got him a vtech book for 6-36 months and a car set for 18+ months which was much better. ***

FeiFei got a doll with carriage and bed set which was perfect for her. So sweet to see her love on and nurture the little baby!

I was a little nervous as the family all planned to meet at our house since it is large enough and central. My mom and brother planned and prepared everything. Did I mention that I was sick and went to bed after presents until about 3.

The littles actually did great but I have come to find I already have mommy thought over cav's legs. Yes he very interesting but he is not a science experiment you just come and rip his socks off to look at ( my FIL). He is first and foremost a scared little boy.

It was interesting to see how the effects of daycare (I worked nights for years and not a big daycare proponent- I know a few are good but the majority are not sorry for the soapbox) and orphanage played out over the evening. Let me tell you the daycare won out after I found Cav being strangled by his cousin who he outweighed. It is sad to see the submissiveness he has at times.

We will give him back his confidence I just know slowly but surely. It's definately Like having a new piece of clay to shape just a little until our beautiful boy is one of us.

It is so interesting getting two - one from foster care for 3 years and one from and orphanage to see the differences. FeiFei acts like she has been with us for years, Cav can be down right frustrating to the most patient but he is also the most rewarding.

When we started this process almost a year ago all I prayed for is for our sweet FeiFei to be home for Christmas!

Playground fun

We spent the day shopping on Shamain island, and came across a darling little park right off the water - close to Lucy's. We learned a few new things about our little ones today

1. Cav is terrified of dogs
2. Cav is terrified of bronze statues?!?!
3. Bananas don't sit we'll with his tummy
4. He LOVES the playground
5. He is amazing despite his disability
6. We love his laugh!

FeiFei loves getting her picture taken as long as she can see the picture again afterwards!

All in all it was a pretty good day. We have met some of the neatest families all adopting special needs children. I am continually amazed at how incredibly open these families are to these children of varying needs. Families providing homes for kids with albinism, burns, CP, significant limb differences and many other disabilities.

Church on Shamain island & pictures

We spent the morning at the church on Shamain Island (where most of the kids appointments are). I have no idea about the history of the church or how it can hold services but I can tell you two very important things - 1 it was packed with those worshipping and they seemed to keep coming in. 2 worship especially the songs, in any language, calms the soul. We actually lasted an hour with not to much disruption.

When we left I saw a young couples praying over a tiny baby, you could almost feel the intensity of their prayer. It occurred to me either the baby was Sick or they were preparing to abandon her. This was only our impression but as many passed by them they were so intent, so sad, praying fervently over this tiny baby girl. Please pray for them.

Tomorrow is our TB tests and they look pretty good. My pictures are limited today due to battery issues, but we bought the darling squeaky shoes for FeiFei ( minus the squeakers). They were only $5 a pair and are comparable to bear feet or other boutique brand leather shoes! And they fit her wide feet!

Stitch aka cavanaugh is doing better. He slept from 4:30 pm yesterday afternoon straight through to morning. I am sure the disruption of his schedule has been hard on him. You can almost see him trying to be better - like putting his garbage in the trash can and looking for approval. I do have to say that he is incredibly agile despite the significant malformations of his legs. He "walks" so fast on his knees. Although I am sure it makes others around us uncomfortable, we let him down especially where there are slick marble type floors. We have gotten a few comments but truthfully people have been so kind here.

Pictures of us
Between FeiFei's dwarfism and cav's legs and little mans big eyes and traveling with 5 kids we get lots of stares and requests for pictures. We are fine with it, and the girls LOVE little man - in fact he got a calling card from one girl today! He has been so good about it and says hi to most people in both English and Chinese. Our big boy was outside the shoe shop today and received 6 requests for pictures in the span of about 10 minutes. Such an interesting experience!

I realized today that Christmas is in a week. There are Christmas decorations up everywhere and look like throwbacks from the 60's but we were told that they love the decorations and the idea of Santa but not the real meaning of Christmas. It makes me very sad. These are the small things that truly make me long for our home. Things may not be easier for a while and we anticipate a long road ahead for Cav but we at least have the freedom to live our lives in peace.
Gotta love the lady in the Christmas getup getting her pictures done on the island!

Alive & well

We finally can get online and post! What a trip! We just got to our final destination city - Guangzhou, china- where the US consulate is. We have had the kids not quite a week and have traveled almost the north- south length of China. I will post more about the trip later but I know that you are wanting to know about the KIDS!!

FeiFei is an absolute doll and charms everyone we meet. She is smart and talkative. She loves to perform, is prissy and just a jewel. Her gotcha day was rough though. They traveled with five kids by train 2.5 hours plus picking up the kids etc. then it was decided the kids would be brought to the hotels and not to a central location. FeiFei was the last to be dropped off. She arrived wearing 4 pairs of pants, a thick jacket, a turtleneck, and sweatshirt. We thought she weighed at least 10 lbs more! We were handed to bags stuffed full of cookies and treats? Apparently when she was returned to the orphanage in September she pitched such a fit they returned her to her foster parents. So not only had she spent all day traveling ( it was now 5:30 pm), watched 4 other kids gotcha day, and had just left her foster parents that morning - once she realized we were the "mama & baba" for her she screamed a blood curdling scream that wretched my soul until she fell asleep. Oh how I spent that night praying, my heart hurt so much for her. My head knew it was for better but how my heart hurt. When morning came she woke with her beautiful smile and has filled our hearts with her laughter.

Cavanaugh arrived arrived shortly after to 2 last Sunday. He was all smiles and we were amazed at how agile and fast he is despite his significant limb impairment. He apparently got sick on the way and his multiple layers were covered in vomit ugh. He arrived with a male caregiver who was awesome. He barely cried and we had a great time with him until FeiFei came. The next day we saw his caregiver again and spent the day with them again as we finished his paperwork. We really had no choice about this. His caregiver had to be in his mid 20's and was very nice to him but also gave into Cav's every want. When we said goodbye at the end of the day you could see that his caregiver was very shaken and I think that this affected Cav more than we may ever know.

The next few days were as close to hell as I ever want to come. We were warned before we left that Satan hated adoptions and if you remember cavanaughs adoption was totally a God thing. I am ashamed to say how easily we forgot to go to the foot of the cross during our time of trouble but in a land so vast and without any form of religion we faltered. We did have to search our souls as Cav's hands are also affected (we were unaware of this) and decided although this might be harder than we ever thought he was our son. Please keep us, him in your prayers - we have seen prayer calm him and help us.

We have affectionately named them Lilo and Stitch.

Now let's see if I can upload some pictures!