Joshua's story

Since I frequently use this blog as a place to give health updates about Joshua, I wanted to write a post explaining his medical background.  (ETA:  this blog post is just a quick summary.  To really understand what it felt like to go through all this, check out Kenny's book.)  I know many of you who are so gracious to read my blog are very familiar with all this, but in case there are some of you who know parts of the story but not all of it, or who have more recently become a friend, here's the story in brief:

Joshua was unexpectedly born with Pierre Robin Sequence (PRS), which is a craniofacial condition where the baby has an underdeveloped jaw, set-back tongue, and cleft palate.  PRS can cause significant problems with eating and breathing.  Josh was born in Reno, then life-flighted to Salt Lake City at 3 days old, where he spent a month in the NICU so that doctors could address the eating and breathing issues, give him his first surgery, and run tests to check for other problems.  When Josh was sent home, there continued to be significant issues with his eating, breathing, and hearing (he failed his first hearing tests).

During his first year and a half, Joshua received 9 surgeries to address these issues (the most major surgeries were his jaw distraction and his cleft palate repair).  He was on home oxygen for the first 12 months, and he was fully or partially tube fed for his first 4 years.  

He's seen a bunch of kinds of doctors: pediatricians, developmental pediatricians, pulmonologists, orthopedists, audiologists, otolaryngologists, neurologists, geneticists, anesthesiologists, hematologists, cardiologists, urologists, gastroenterologists, dermatologists, craniofacial / plastic surgeons, ophthalmologists, physiologists, pediatric dentists, orthodontists, emergency physicians, neonatologists, intensivists, hospitalists, speech therapists, physical therapists, occupational therapists, feeding specialists, nutritionists, and social workers.  (These are all in plural because for many of these, we have one of each type in Utah, Virginia, and Nevada.)  He had numerous tests run (for example: 9 sleep studies, 4 swallow studies, etc.).  Now he's graduated from regular checks with most of these doctors, and we can just call them as needed.

In October 2014, he got a new diagnosis of 4q deletion syndrome.  Here is the post describing what that is and what it means for his future.  For most kids with this type of chromosome disorder, the most serious medical issues occur in the first couple years due to various birth defects, and after that there is sometimes ongoing (but usually more minor) health issues and developmental delays / learning disorders.

[I will edit this last paragraph periodically to keep it up to date]:

Now, at age 10, Josh is doing great and he's past his most serious medical issues.  His breathing is (usually) no longer an issue and his hearing tests as normal.  He continues to have minor developmental delays and learning challenges so he receives special services at school and private occupational therapy.  He has an oral aversion, due to all the medical interventions and sensory processing disorder, so eating is still a challenge, but he successfully weaned from his feeding tube around his 5th birthday.  He also has some ongoing medical issues (seasonal allergies, asthma, GI issues, sinus infections), and from time to time other things pop up (including 6 additional minor surgeries since the series he had as a baby).  But overall, we are very grateful and happy about where he is now.

Raising Boys v. Girls: The Toddler Edition

Back in August, I wrote about my thoughts on the difference between raising boys and girls, focusing on my hopes and fears (since there is very little difference between infant boys and infant girls).  Now I have two toddlers, so I can start writing about observed differences rather than just projections.  My sample size of two is very limited, but it's still interesting to see the ways that the kids are similar or different, how that lines up with gender stereotypes, and how much can be attributed to nature v. nurture.  So without further ado...

What I expected to see:  Toys and play are the major way I can see the kids' personalities at this age.  I expected that boys and girls would gravitate towards totally different toys, probably because a visit to the toy department of any big box store markets toys strictly along gender lines.  (And here's something that's super annoying: most of the toys marketed to girls are about their appearance - make-up, fashion accessories and dress up - or about their role as a homemaker - cooking sets, vacuums, and dolls galore.  I don't mind some of that, especially the dolls, but why are there not more toys that encourage girls to explore interests outside of these two narrow subsets?)

What I actually see:  The kids are mostly interested in the same toys - anything new, anything that's a miniature of what they see adults using a lot (ie play food, play mower), and anything that the other one is playing with.  Despite what the aforementioned toy marketers would lead you to believe, there are actually tons of toys that are gender neutral - books, puzzles, pretend play items, stuffed animals, sports equipment, and musical instruments.  Girls are interested in cars and trains if given the opportunity, and boys are interested in play kitchens and tea parties if given the opportunity.

So how are they different?  The main difference is not what they are interested in, but how they play.  Joshua likes to be moving or doing something - running laps around the living room, jumping on the trampoline, chugging trains around the track, crashing cars into each other, and building towers with his Legos.  He doesn't mind if other people join him in playing, but that's kind of secondary.  Zoey, on the other hand, likes being relational.  She will play chase and jump on the trampoline, but it's because she likes hanging out with her big brother.  She will also play with the cars and the blocks, but her favorite way to play is to bring them over to the nearest person and share what she found.

The other big difference is problem solving:  Zoey loves to say "Mommy do it".  She says this phrase (or some close variation - "Mommy read it", "Mommy get it", etc.) at least 100 times per day.  I don't think Joshua has said this phrase a single time in his whole life.  He will try to solve problems on his own with great determination, and if he can't figure it out on his own, he's more likely to start screaming in frustration than to seek help (we are working on this and he's getting better).  Zoey is much more inclined to seek help first and problem solve only if the person who already knows how to do the thing is unavailable.  (She probably learned this from me, so Zoey and I together need to learn how to take more initiative in problem solving.)

I won't make any generalizations based on these observations because this could really just be my two kids and not a broad representation of all boys and girls everywhere.  But it's funny to see differences emerging from the very beginning.  I'm interested, other parents and caretakers of young kids - what kinds of similarities and differences do you see between toddler boys and girls, and how does this match (or not) with what you expected?