Search This Blog

Loading...

Tuesday, August 26, 2014

Reality...is....not......easy


  We survived the entire summer with the halo on Elliott.  He got about 25 degree improvement on his spine, but boy did he deserve that improvement.  Putting a kid like Elliott who has finally found freedom and started moving and discovering in a wheelchair that he is suspended in and can't move independently in was TORTURE.  We saw a different side of Elliott, he lost a lot of light in his pretty brown eyes and honestly just seemed depressed. 
  The beginning of August he was scheduled to have the halo removed and have growing rods called VEPTR placed in his spine.  This is a system that requires two surgeries per year to adjust the length as he grows.  They were supposed to hook onto his ribs, but when they went in for the surgery they discovered that his ribs are far too thin and frail to bear that kind of weight so they had to change course and place them on the spine itself.  Initially we were told that he would probably be able to go to the normal floor and go home in two or three days.  They also said that he would be up walking the next day.....um.....no! He ended up in ICU for about three days where he was given an ND tube and a blood transfusion (For those of you who don't know an ND tube is a nasoduodenum tube which surpasses the stomach and supplies food directly into the top of the intestine) we spent almost another week in the hospital and eventually got to go home after a long week with lots of hurdles.  He still was only walking supported for a few minutes at a time and would cry the entire time.   He's been home a couple of weeks (including a day in the ER with pneumonia) on a feeding tube and oxygen and is only just now starting to show an interest in moving independently.  It will be a long road to recovery, but we know this was truly his best chance for his lungs to develop the very best they possibly can.  His spine looks SO much straighter - it is absolutely amazing. 
  We will be back in Denver at the Children's hospital for a follow up in a few weeks and he will likely be having at least one more surgery before the end of the year for feeding and GI issues.

Waiting with Daddy to get his halo taken off

On his way back to surgery - feeling good with the help of some meds.

Pretty miserable

A week in and starting to smile again

Not happy about having to sit up

Finally up and walking and not even crying!

Saying goodbye to his favorite purple cow at the hospital - also the only purple cow

Asleep on the long ride home

In the ER two days later with Pneumonia :P


 Lance is on a diet! Ok, so not a real diet, but yes his therapist and doctors did say he needed to cut back calories and slow down on the weight gain. LOL (Who would have thought?) With kids who have a hard time controlling muscle movement in the first place the extra weight can be especially detrimental, so it isn't that Lance is overweight or unhealthy, he just has to maintain a trimmer physique to encourage as much voluntary movement as possible. 
  He is having a couple surgical procedures done tomorrow as well as botox injections to help keep his muscles relaxed and again help him with movement and tone.  He is also developing scoliosis in part because of his dislocated hip.  We were really hoping to get another year before we needed to have the hip surgery done, but it is looking eminent - like in the next few months. :/  This is a pretty major surgery and again a long recovery time.
 
  In the last 9 months since the boys came home, I have learned about more things than I even knew existed.  I have been stretched and tried and learned a lot of things about myself that I never realized - it hasn't always been pretty.  I won't lie, this road is ROUGH, it's HARD, it's frustrating, and sometimes disheartening.  I feel and see my weaknesses every day. I praise God though that when I am weak then I am strong because some days that must mean I am VERY strong.  At the end of the day though, I can say that I love my children and my husband more than life itself.  I am honored that God called me to this difficult road and I can't wait to find a little more of His strength at the in the midst of each struggle.
Lance is rocking his plethera of equipment: a back brace, hand braces, a wedge for his hips, and bananas to help his head stability

So naughty and demanding attention, but always happy when he gets it!

Lovin summer!

Um, too cool for school?

Basking in the sun with daddy

Add caption

Cuddling with mom

So handsome and yes chubby little cheekers!

Wednesday, June 11, 2014

Elliott is 6!!!



  I'm sorry I haven't really updated this for a while (Hangs head in shame).  The last few weeks/months have been really busy so please be patient with this post as I am almost certain it will be scrambled!

  Elliott and I went to Denver Children's hospital May 15 for his halo placement.


Elliott waiting for surgery

Notice that his foot and leg are "casually" completely backward? That would be Ehlers-Danlos for you ;)


  
 
Living in an orphanage and never having the stability and love of a family really takes it's toll on a little person, and that has become increasingly evident over the past month.  It started when we got to the hospital and Elliott's anxiety became increasingly worse with every person that walked into the room. 
 
 
Surgery itself, which involved drilling eight screws into Elliott's skull, surprisingly only lasted about 40 minutes.  As far as pain management was concerned Elliott did really well.  Emotionally Elliott woke up to a halo drilled just above his eyebrows and PANICKED!! Let me tell you! They gave him something to help with the anxiety and it was still awful.  Can you imagine waking up to this:
 



Well, neither did Elliott.  After a few days he adjusted and started to really love being the center of attention - everyone in the hospital knew who he was since mostly he spent his time riding the elevator and in a contraption like his he was hard to miss:



He learned to take his own vitals (well, almost) and the nurses adored him.  He was even nominated as hero of the month!!!


 We were in the hospital for a week and it was hard. The last day there Elliott really started to show some of his old orphanage behaviors. We were discharged on Wednesday, but not before getting evacuated to the hallways for a tornado warning and YES This is a real picture of the tornado happening right by the hospital while we were there and No, I didn't take it since I was stuck in the hallway ;) :



Once we got home I was hoping things would settle back a little bit, but the reality set in for both Elliott and I.  The fact is that Elliott is supposed to be in traction from the moment he gets up in the morning until he goes to bed.  The traction set up prevent shim from being able to move independently and he can't even look down to see his own food or look up to talk to anyone taller than him.  He drops things and can't pick them up, he doesn't have a lot of play skills because he never learned how to play (a simple thing that we all take for granted - knowing how to play) so most of what I hear throughout the day is: Mommy, can you help me? (*pick up a wash rag) Mommy, can you help me (*Play with this toy) Mommmmmy, can you help with my jacket?  Mommmmmmmmy, can you help me pick this up?  Mommmmmmmmmmy, can I please take off my halo? (Which is not an option without anesthesia and a surgeon) Mommmmmmmmmy?  Mommmmmmmmmmmmmmmmy?  Are you getting the idea?   We are READY to get this traction nonsense taken off!

Now, having said that, we have worked on finding things for him to do that he likes and that will keep him entertained for at least 5 minutes, including busy bags, a busy board, glitter jars, and scissors with paper.  (Ahem, most of those don't work for him because he wants mom to do them all for him - sorry, buddy, I can't play for you)   He is adjusting though and physically we have seen his spine go from a 90 degree curve to about 65 degrees.  We will go back in about a week to hopefully see what comes next.  Our likely options will include a cycle of traction/bracing/traction/bracing etc... or growing rods which will need to be adjusted every 6 months or so.   If we continue with the traction cycle Elliott will have a lot of frustrations and it still includes some type of surgery every few months, if we go with the growing rods we will be looking at a very intensive surgery, possibly a feeding tube temporarily to help him gain as much weight and strength as possible leading up to and immediately following the surgery.  Either option is stressful and will be difficult, but the reality is, that with the severity of Elliott's scoliosis we can NOT do nothing.  His lungs and internal organs will be severely compromised and shorten his life if we leave it - those are the facts Jack.

Alright, so this is getting to be a long post and I really need to be taking care of those little rascals that are currently either playing with play-doh, in the sandbox, or throwing little pieces of paper that have just been cut to bits (Can you guess which one?) with the exception of Lance-bo who is contentedly sleeping in the living room ;)

Here are a few more pictures of our newest 6 year old!!
Roasting marshmallows

FINALLY we get to go home and look what fun and enormous equipment!

Elliott celebrating his 6th birthday
After a day or two Elliott finally discovered the purpose of that triangle above his head:  It's a perfect place for his foot!

Working out those arms!

Wednesday, April 16, 2014

Elliott

Sorry for the late update, but here goes!

I picked Elliott up from the orphanage on December 2, 2013.  He was all smiles and the orphanage staff obviously loved him and were happy for him.  We had a slew of appointments and that first day was pretty much hectic.  We spent the next few days in Bulgaria.  This was a HARD week friends.  I mean hard.  I missed my husband, I missed my kids, and life was full of unknowns and it was scary.  Elliott liked to pull hair and broke more than one of the hotel's glasses by throwing them, he got into the trash, tried to open the hotel door and escape regularly, and I was beginning to realize that I would need to have an eye on him constantly.  I messaged Todd about a day in and told him to Elliott-proof the house - put locks on doors and trash cans, buy lots of baby gates, etc... We went shopping at the indoor market one day and while I was buying tea, I realized that Elliott (who was in a stroller) had grabbed ahold of a little old lady's purse! I. Was. Mortified! The lady was very gracious and sweet, but I learned quickly that every person we passed he would try to grab a hold of something of theirs and then laugh about it. :O
 We boarded the plane in Sofia on Friday morning and flew half way across the world to get home.  Elliott did really well on the planes, except that he threw everything! I felt really bad for the passengers behind us, because every time the flight attendants came by they gave him something and he would promptly throw it behind him...cups, pillows, crayons, books....I had help from a good friend who mostly helped with Lance on the flights, but the very last flight I was by myself.  I wanted to sob when we landed. I was absolutely EXHAUSTED and honestly worried about what this new life would look like. I waited on the plane for someone to help me deplane since I obviously couldn't carry both Lance and Elliott off.  I didn't have a chance to wash my face or brush my hair and I'm pretty sure that I was a disheveled mess.  I hadn't stopped to do my makeup or brush my hair since we had boarded the flight in Sofia.  We were greeted by daddy, siblings, nana, aunts, and a few friends.  They were all there to meet these two strangers who were now a part of our family.  I wanted nothing more than to fall into my husband's arms, hug my little ones and go to bed. 




That first week was hard.  It was emotional for all of us.  Lance needed to be fed almost around the clock, several of the kids were sick and Elliott decided that he didn't want to eat any more.  The only way I was able to get calories into Elliott was to rock him and give him a high calorie bottle. (Yes, I know that he is 5 and many of you will think that is the oddest thing in the world - but to a little boy who has never had a mom rock him and feed him, he needed this and emotionally he was a newborn)
Ok....so it has been over 4 months and honestly I can  laugh at the fact that my 5 year old son was trying to pick pocket little old ladies in a market in Bulgaria.  I can laugh at the fact that we were charged $15 for a cheap glass at the hotel and I can laugh when I think about the little "yoda" voice that he made the whole week we were in the hotel whenever he was about to get into trouble.   I look back and I realize just how absolutely stressed Elliott was at the time.  He doesn't do any of those things now, and the house doesn't need to be "Elliott-proofed" because he wants SO MUCH to obey.  Yes, he is a 5 year old little boy and he gets into mischief every now and then, but he is such an amazing kid!  He loves to just sit on my lap, he tells me he loves me, asks if he can help me make the bed or load the dishwasher, he says "I love you Mama, I love you so much!"  He gives kisses and hugs and loves having a family and we adore having him! He makes me smile every day.  He loves to talk and repeats everything he hears.   He wasn't walking independently when he came home and now he walks all over the place and keeps up for the most part.  He counts to 13, knows most of the colors including purple, orange, black, and white...his favorite color is green this week - last week it was yellow ;).  He knows the letter "R" and what it says and is learning to ask for things in complete sentences for example:  instead of "glasses?" he says "Can I have please my glasses?" (yes, he says "have please" instead of "please have")






Ok, physically: Elliott has had a couple of B U S Y weeks.  Let me start by telling you what Elliott was diagnosed with from the orphanage.  When we first saw Elliott's file he was listed as having "Freeman Sheldon Syndrome"  which is a very rare form of Arthrogryposis Multiplex Congenita, a condition which causes multiple contractures before birth.  For those of you who may not be aware, a contracture is a joint that is "fixed" or stiff.   Many kids with AMC aren't able to bend their arms, or their legs, or their wrists.  Freeman Sheldon Syndrome in specific is known as "whistling face" syndrome because the people with this syndrome have the appearance that they are whistling.    When I met Elliott last June, I was pretty convinced that he did NOT have AMC because not only were his joints not fixed, but they were actually loose.  He did not have the characteristics of Freeman Sheldon Syndrome at all.  However, the orphanage INSISTED that he had genetic testing done and that it was PROVEN that he has this syndrome.  I learned after bringing Elliott home that the genetic test actually stated that he did NOT have that (no shock there!)  So this begs the question: What does Elliott have?  His major issues are tissue paper skin (it is velvety feeling, tears, and bruises easily and does not heal well),  he has FLOPPY joints, and almost no muscle tone, and the most noticeable feature is severe scoliosis. 
In the last month Elliott has seen cardiology, had an Echocardiogram, EKG, full sedated MRI of his spine, 4 x-rays taken 3 separate times, had blood drawn, seen the opthamologist, pulmonologist, nutritionist, had orthotics made, seen the orthopedist in Grand Junction, seen the orthopedic surgeon in Denver Children's Hospital, had a genetic test done, and finally seen the geneticist. (Not to mention the regular physical therapy appointments and pediatrician)  What does all of this mean?  His hips are sublexed but not yet dislocated, his heart is fine, his lungs and breathing are fine, he got glasses (which he loves), he does not have arthrogryposis, he is having orthotics made for his ankles and feet to help stabilize him and help him walk, we will follow up regularly on his hips, and we will keep working to get him to gain weight. 
What DOES Elliott have?  He has a connective tissue disorder that is genetic called Ehlers Danlos type 6a.  This explains all of his symptoms and it is likely that his biological siblings or parents may have this as well. He was probably born with the scoliosis and it has just continued to progress.   It is a rare type and the geneticist didn't have many answers for me except to tell me that there really is no way to treat his low tone, tissue paper skin, or ligament laxity.  Basically - nothing changes except that now we have a name to call it ;)    Our biggest concern for Elliott is his scoliosis, generally doctors start recommending rod placement once scoliosis reaches a 40 degree curve - Elliott's was close to 80 degrees when we got him  in December and has already progressed about 10 degrees.  It is not going to stop and eventually will compress his organs if we don't do something.  Our options are very limited to either halo traction or rod placement.  Right now we are trying to prolong the rod placement as long as possible (this is a 9 hour surgery and long recovery - not to mention two additional surgeries each year while he is growing)   After discussing the options with several different medical professionals we have decided that our best and least invasive option at this point is to start with the halo traction.  This will involve 8 screws drilled into his skull, a week in the Children's Hospital in Denver, and traction for several weeks if not months.  If you aren't familiar with the halo traction set up, let me fill you in:


Yep, this ^^^ for months! I have NO IDEA how we will transport this little boy around in this contraption, but I'm sure we will get it figured out!