Thursday, July 24, 2014

Five for Five

It's been such a long, long time since I've given any attention to this blog.  Five months to be exact.  I love the IDEA of blogging - journaling milestones for my loved ones to read now, and maybe for my children to look back on in the future.  It's just the reality of finding time to sit down and do it that I struggle with :).  So here is my attempt to bring you all up to speed on life at our house the last five months...

March:  Bou turned eight!  While she is strong, athletic, and competitive (poor kid got a double dose of that last trait from her parents), Bou exudes pure feminine beauty in her choices of clothing, hairstyles, decor, etc.  So it was no surprise to me that she wanted to have a real tea party for her birthday.  I tried to convince her to have it at the local tea room here in town because it would be easier for me.  I am not ashamed to admit that my parties are never Pinetrest worthy, nor do I even  attempt for them to be!  Anyway, Bou insisted that she wanted to have it at home, so I finally agreed, and gave party planning my best shot.  We moved the patio table inside to the dining room to have enough seating, dug out some some semi-matching tablecloths (well, one may have been a twin sheet from the closet!), and made a few tissue paper flowers to hang.  Bou thought is was beautiful, and that was all that mattered.  My dear friend Suzy came over to help me with the party and even brought some delicious homemade goodies.  We served Maui Mango and Strawberry Lychee teas, cute little sandwiches, scones, and more.  Then, per Bou's request we played Bingo.  All the girls seemed to have a lot of fun, and afterward they ended up playing in the yard,  squealing and laughing until their parents arrived. 

April:  Buddy turned four and Bear turned six months old!  This sweet boy was so happy to wake up and find a chocolate muffin and a couple of presents sitting at the breakfast table.  Later that afternoon he had his first "real" birthday party with some friends at My Gym.  He had such a great time - made my heart happy to watch him. 
 And this baby continues to bring so much joy and laughter to his siblings (and to us).  His personality is really emerging and it's fun to see how much he favors his older brother.  He is still quite the snuggler too, which makes his mama happy :)
May:   Our house addition was finally finished!  This project was in the planning stages for a long time, then under construction for about nine weeks.  We really needed an accessible bathroom for Bella, and though we tried to be creative, there was just no way to retrofit our two existing bathrooms (built in 1950) to accommodate a wheelchair.  Ultimately, we chose to add on a bathroom and bedroom.  Back when we bought our very modestly-sized house, we believed that our family of four was complete.  Now that we are a family of six, a little extra room comes in handy - but it's really the bathroom and the 36 inch doorways that have improved life for us so much, as the care providers.  I assumed that the new bedroom would be Bella's alone, that Bou would stay in the girls' old room, and the two boys would be together.  For this reason, we kept the bedroom small to keep the cost down, and made the closet about half the size of the other bedrooms.  Much to my surprise, Bou wanted to continue to share a room with her sister, so we moved the two of them over, purged lots of stuff, and were even able to fit everything into the small closet very nicely.  I love their new room, and Bella LOVES having her sister in there with her. 
The bathroom is small for an "accessible" one, but it has everything we need.

June:  It has become our annual tradition to go to Maui the day after the kids get out of school.  We normally spend the entire time at the same resort, because the kids absolutely love the pools, lazy river, rope swing, and slides there - all things water!  They couldn't care less about the room or food or anything else.  However, this year we decided to spend half of our vacation at The Royal Lahaina.  My husband's childhood friend is the hotel's marketing director, and thanks to her graciousness and hospitality our time there was memorable - so memorable that I want to write an entire post about this place a little later.  One of the highlights for the kids and me was being able to see a monk seal beach herself nearby every day, for what is called a "catastrophic molt".  The first thing the kids would do when they woke up each morning was run outside and see if she was still there.  Monk seal sightings are very rare these days, but what made this one even more special was that a SECOND very young monk seal joined the first one on the beach!  The Monk Seal Foundation volunteers who watch over the endangered animals when they are beached said that they have never seen two together on the sand, as they are loners.  The older seal clearly did not want to be bothered by the younger one, who just couldn't seem to take the hint and move on to another stretch of beach :).
July:  The month of the cast(s).  Actually, it should read "the months of the cast(s)" since the first one went on in June - but the majority of them are actually being worn in July.  Right after returning from Maui, Bella was scheduled to do six weeks of serial casting in an attempt to get her feet into a nice neutral position.  All that means is that she would go in once a week and they would remove the previous week's casts, manipulate the position of her feet a little more toward "normal", and recast them in that position for the next week.  The process would be repeated times six.  The goal is to have feet that are corrected enough to be placed into AFOs (a type of brace) and eventually get her standing.  It is a slow journey with many more steps to complete and many more factors that must fall into place to make standing a possibility.  But we are all working hard to give her every chance to accomplish that.  One of the biggest obstacles for Bella right now is that her head is so large and so heavy due to her hydrocephalus that she cannot hold it up more than a thirty seconds, let alone balance.  We are hoping that as her body grows and becomes more proportional to her head, and as she continues with therapy, that will be less of an obstacle.  

Anyway, instead of casting both feet as originally planned, she ended up in a long leg cast for a broken femur right after we returned.  As I have mentioned in the past, Bella has severe osteopenia from her years spent in the orphanage laying room.  This particular bone has also been broken several times in the past, prior to her adoption, as seen on her xrays.  So into a long leg cast she went, and we delayed serial casting for four weeks while the femur healed.  That cast came off, the bone looked great, and we moved on to the feet.  However, the left foot looks so nice at this point that the orthopedic surgeon decided it didn't need casting - yay!  We are now just serial casting the right foot.  The surgeon said there's about a 50/50 chance that the casting will be successful, given the degree of damage caused and the fact that there are bony changes present from lack of intervention.  At the end of this six weeks, Bella will have surgery to remove the hip hardware placed in last summer's surgery, and at that time they will also surgically correct her right foot if necessary.  So there you go, that's the latest on Bella's journey to health!  She gets to pick her cast color each time, and so far we've had pink, purple, and green :).  
 Sweet kid fell asleep playing with her princesses after we got home from the hospital :)

Whew, well that's it.  Hopefully from now on I can average more than one blog post every five months!