Tuesday, February 16, 2010

Sorry for the delay

Thank you, Ann, for the gentle reminder that I've been too quiet these last few days. So, what's been going on?

We're still hanging in there. We're still a family separated; two of us 60 miles away and 1 of us 6000 miles away. We're getting by and maintaining a shred of sanity.

For the last almost eight weeks we've been blessed to have more prayers sent up and good wishes passed on than we could ever imagine. We've been blessed to have excellent doctors and supportive family and friends to see us through this. About a week ago, however, we were given an incredible gift. It's not often in our country that we see true compassion and unselfishness at work. In other countries we see it all the time. In the face of tragedy whole nations, communities, villages drop everything to come to the aid of their fellow man. It's not often in our society that people sacrifice for others with no expectations of receiving something in return. Sure, we talk about it a lot, but how many of us actually do it. That is exactly what has happened for our family. We have been touched by an angel - an individual with true unselfish compassion, an individual who dug deep and realized that when someone in your "village" needs help, you drop everything and come to their aid. We have received not only an amazing gift from this person (you know you are), but renewed faith and spirit at a time when both have been waning. "Thank You" seems insignificant, but I guess that's part of our "we must return the favor" mentality. Truth is, we can't possibly return this favor, we can only accept this amazing gift and say simply, publicly "THANK YOU FROM THE BOTTOM OF OUR HEARTS!"

M is doing well. We are out of the PICU and truth be told, I want to go back. I'm not comfortable on a regular floor. I miss our nurses, I miss having residents and doctors around all the time, I miss being able to get something done immediately instead of having to wait all day! I digress......It's been four days since her last surgery - a current record. She had an MRI, and dye study yesterday and her shunts appear to be functioning well at this time, with the exception of one trapped temporal horn. I won't go into detail, but my hydro parent readers get it. Not sure yet if there's going to be any intervention for that. Our neurosurgeon feels best at this time to let it go as long as it is not causing her problems. I think it IS causing problems, but that's a battle I will have to fight. He plans to possibly do a repeat dye study today through her other shunt just to ensure we get the whole picture before possibly starting to talk about going......H-O-M-E. She has had an extremely difficult time adjusting to the anti seizure medications. She's been pretty much sleeping nonstop. M still does not have use of her left arm/hand and her left leg is weak. She still needs a lot of "support" with eating as her sucking is poor. It's impossible to tell how things will pan out long term. She has been through so much this past 2 months.

E is continuing to be a trooper through all of this. He is definitely having some significant (new) insecurities. He cannot be left alone at all. You can't leave the room, go to the bathroom, take a shower, nothing. It has carried over into school where he launches into a complete meltdown if his teacher is out of sight. I feel so guilty and it breaks my heart that he feels like he's going to be left by any of his loved ones. I know he's resilient and in five years he won't even remember this, but right now, it's so hard to watch him struggle. Other than that, he is doing incredible with school and is learning more each day. He has starting pitting Mom and Dad against each other. Since we are all never home at the same time he will do something inappropriate, be reprimanded and chime in with "Oh, Daddy lets me do it." Yeah right! He had his neuropsych evaluations in January. He definitely has Sensory Processing Disorder and possibly ADHD, although I'm not a fan of the ADHD diagnosis - I think it's WAY overused (go ahead and flame me if you wish). I definitely see the SPD, and have since he came home almost 3 years ago, but he is also an almost 4 year old LITTLE BOY - they are supposed to be hyper and a little crazy! We have tools and resources available to work with him on his sensory issues, but as for medicating my 4 year old - ABSOLUTELY NOT - NO WAY,NO HOW!!

K is still hanging out at the BBH waiting for her family to come and rescue her. She received a very special visit this past week from 3 beautiful, talented waiting Kyrgyz mamas who travelled with the president of JCICS to Bishkek on Feb 5th. Their goal was to meet with as many government officials as possible to get our plight heard. They have been extremely successful! They have worked so hard for the children and waiting families and we are so grateful to them. February 15th was the "magic" day that Parliament was supposed to hear and vote on adoption legislation. It was the day we've been waiting for since oh, last fall. It came....it went....nothing happened - BIG shock there (insert sarcasm). While I do have renewed faith that these adoptions will be completed....eventually, I am still frustrated to no end that "my" little girl has to sit and suffer.

So, that's it in a nutshell. We're hanging in there, waiting to all be healthy and home together again.


Michelle said...

great to read a post! yeah! I can totally relate to the floor vs ICU! Home is the best though and I just love hearing how spunky you are advocating for your baby. You go girl!

Ann said...

Whew... I am glad to hear that things are as well as they can be expected and you are in a recovery phase and hopefully soon to be home again. Many prayers for continued recovery for Little M. Also for E, that you can get home and he can have his momma and dad and little sister all under one roof again. As for K and all the others I too am so thankful for all the hugs and kisses that were showered on our sweet kids this last week. Thank you for posting I was worried!