It's Almost Christmas

Sometimes it is hard for me to believe it is already December 21.  Then I am reminded by Kalina saying, “It’s almost Christmas” several times a day.  The random Christmas carols she belts out, with Jadon helping her, also help.  She is really in the holiday spirit this year.  She continues to ask difficult questions about Christmas.  Her latest was, “What does Santa have to do with baby Jesus?”  And yes, I am still being reminded to call baby Jesus’ mom to ask about a birthday present.  Kalina likes to remind us how many days she has left before she returns to school.  Like her brother, she loves going to school. 

Friday was Jadon’s last day of school for the year and his class went on a field trip to EMP in Seattle.  I went with Jadon’s class as a chaperone.  I was so happy that Jadon was able to ride the bus with his friends.  What a fun way to end the year before break. 

Jadon is also in a festive mood.  We spent the past weekend baking lots of cookies.  Jadon was a great help.  It was fun to have him in the kitchen with me again.  We have enjoyed our first few days of winter break and look forward to more fun days.

I did schedule some appointments for Jadon and Kalina during break.  I really don’t like for them to miss a lot of school for appointments – and they don’t like that either.  On Monday they saw Dr. Goldberg and Dr. White in the skeletal dysplasia clinic.  We go every six months for check-ups.  They do a great job of looking at Jadon and Kalina as whole people; they don’t just focus on their skeletal differences.  Both Jadon and Kalina are looking good.  Jadon’s back is recovering well.  He has less than two more months of wearing his back brace.  He did tell me he does not think he’ll be able to just stop wearing it.  He’ll have to ease into not wearing it.  That makes sense to me.  After wearing a brace for seven months (except the time in traction), I can’t image what it would be like to just take it off.   Kalina has some kyphosis in the upper part of her spine.  Luckily, it is improving over time.  That is not to say she won’t end up needing similar surgery to Jadon.  Right now she does not seem to be going down that path but we don’t really know.  Kalina was also complemented on her speech.  Dr. Goldberg thought she spoke very well for a 4 year old.  I was so happy to hear this, especially considering she really didn’t talk until she was almost 3 ½.  We are so thankful for the speech therapy she has received.    

One unfortunate thing about people with diastrophic dysplasia is that their joints start deteriorating at an early age – documents show as early as about 4.  You can already see this on Jadon’s x-rays.  Unfortunately, there is really nothing that can be done to prevent this.  Some people try different surgeries in hopes of helping but there is really no proven successful long-term treatment.  Luckily for us, Jadon and Kalina are not in any pain associated with this.  We hope and pray that this lasts as long as possible.  We were reminded on Monday that, in most cases, the best thing to do is to leave them alone.    

On Tuesday Jadon and Kalina saw Dr. Inglis, one of their ENT doctors.  The big news there was Kalina got her ear tubes removed.    

Now we have a few months before any scheduled appointments.  Jadon and Kalina are followed by quite a few clinics here at Seattle Children’s Hospital.  This holiday season I find myself even more thankful for the care they have received there.  We are so lucky to live so close to such a fine medical establishment.  We are even more grateful for the great people there that help care for Jadon and Kalina.

The next few days should be fun but we are all really looking forward to the weekend.  Andy will be home (he is really busy at work and is not taking any extra time off work this Christmas) and we will be able to enjoy some nice family time.