Birthday Boy!

First Spring Flowers!

Drum Roll Please...

Here it is!!!  Henry's new helmet!  I have to say, since my last post about how much I despise the dreaded thing, my feelings have softened a bit.   The helmet is stretching a bit, which makes it easier to get on and off.  Henry no longer sweats the way he did when he first got it, which, coupled with the fact that I now use a LOT more alcohol to clean it, has made the sweaty smell go away.  Or am I just used to it?  I can't say for sure, but I have learned to kiss Henry around the helmet.  And they did grind the face opening larger (believe it or not) so I can see him better.  And best of all, we can already see an improvement in the shape of Henry's head!

And YES... it really is that big!  I have to admit, the whole process of making the helmet is really fascinating!  Really!!!!  There is a laser that takes topographic measurements of his head, and the computers generate a 3-D image, all of which is sent to the Star Band company, who makes a sculpture of Henry's head in all its lopsided perfection.  Then they use plaster to build up the sculpture in the necessary areas to achieve symmetry, and make the helmet to fit the modified sculpture.  So basically, the helmet is not changing Henry's existing structure at all. Rather, as he grows, the already large areas of his head will meet with the resistance of the helmet, and he will grow into the cavities instead, filling out the helmet.  I actually think it is pretty ingenious, and feel really grateful.  Especially after talking to a woman at the pool, who said when her daughter's was done "in the beginning" of cranial molding the process including slathering dripping plaster all over her furious and uncooperative baby's head... yikes.  

One more surprising thing: everywhere we go, we are inundated with stories of people whose children had to wear one of these things!  Is it just because of the town we live in, and the simple fact that they are available here?  It truely seems as if all of a sudden everyone has or has had a helmet!  Anyway, my fingers are literally so cold that it is impossible to type accurately or quickly because we have no heat... it is in the teens and bitterly cold and windy outside, and a brisk 48 degrees inside (well, it was "brisk" about thirty-something-hours-ago, now it is just "get-the-friggin'-heater-fixed-already" cold) and I am getting too frustrated with deleting and retyping my sentences to continue!  Enjoy the pics!

Mr. Fix-it

Simon has been having a great

time helping Dave insulate the

attic.

Some of Simon's latest art work...

Gotta love it!!!

Question:  Why does Simon's bed smell like pee?

Answer:  Big *previously wet* stain in the center of his sheet.

Simon still sleeps in Pull-Ups, which rarely leak, and if they do he tells us.  So this was quite a surprise, although Simon was asleep when I left at 7:45 to take Henry to physical therapy this morning.  So maybe dave knew and forgot to mention it, but anyway...

I cannot tell you what utter joy I felt, when I pulled back his sheets to discover that the crib sized waterproof pad was placed in precisely the right spot to protect his twin extra long mattress!  Score!

Hope your day is filled with many wonderful surprises!

Shanti

Glad that week is over!

Ahhh... Monday!  Some people may despise Mondays, but I am appreciating this one as a fresh start!  I need a new week... the last one was more difficult than I expected.

Thursday - Henry got his helmet.  I was not expecting this to be a big deal.  I thought it would be like wearing a hat for a few months.  Boy was I wrong!  

The day started out fine.  Simon found some cardboard in a dish box and had a grand time scotch taping it to his body as a robot costume.  He even packed the cardboard up to take it to his friend Whitney's house so they could play robot together!  During our quick lunch with friends, it began snowing and by the time I left Simon for his play date so I could get Henry to his doctor's appointment, they sky was dropping a heavy, sleety, ice pelting on the windshield sort of snowstorm.   

So, we dashed through the icy onslaught to meet with the Nephrologist, who reviewed Henry's VCU (an x-ray that checks to make sure no urine is returning to Henry's kidney when he pees...AKA reflux).  They didn't find any reflux, so all that is left to follow in that area is the pelvic kidney, which might never cause Henry any problems what-so-ever.  Hooray!  Did you know some people just have what's known as a floating kidney?  Or only a single kidney?  And they have no idea their whole lives until they go in as adults to get something else checked, and surprise!, the one good kidney has been effectively carrying  the load.  Of course, we might have to use this as an excuse to tell Henry he can never ever do anything unhealthy... don't tell him our secret!  Okay, so far, the week in review isn't sounding so bad, but I really need to be more concise!  I haven't even gotten to the helmet yet!  

After Nephrology, Dave joined us for the helmet appointment and physical therapy.  Henry's head is flat on the back left because he has tight neck muscles (torticollis) that cause him to favor one side.  He always slept with his head turned toward the left, and over time the pressure cased it to flatten, so much so that his ears aren't even level anymore!  The physical therapist was great (actually, I should say everyone at the Mayo Clinic has been great) but she was especially fun and friendly and helped us work with Henry while the occupational therapist ran back and forth measuring, fitting, and grinding the very expensive, custom fit, baby blue helmet that now prevents me from kissing my sweet boy's head.   Let me tell you about this contraption: it is hard.  Cold and heavy and big.  Difficult to put on, difficult to take off.  And it is so in the way!  I never realized I had a subconscious habit of kissing Henry's temples when I hold him, until I found myself snuggling up to a chilly, unyielding hunk of plastic instead of sweet soft baby skin.  And when I nurse him, we are both uncomfortable.  

We got an incremental wearing schedule for the first four days, to gradually adjust Henry's skin to the constant pressure of the helmet, and today is the final transition day.  Tomorrow, we go to wearing it 23/7 for an estimated 4 months, give or take, depending on Henry's growth rate.  I have to say, it is already getting stinky because it is not remotely breathable and when we remove it, Henry's head is soaked in sweat.  Ever had a cast?  Same odor as when they remove it.  Yuck.  The hour Henry gets his helmet off, it is supposed to be cleaned with alcohol while he gets his hair washed, and we are not in the habit of daily baths here.  Okay, I'm out of time for now, and I didn't even get to the part about Dave puking, or how we lost the opportunity for a free, romantic getaway sans kids.  There will be more, including pics, as soon as I find the camera charger.  Time to feed these hungry boys!  Happy new week!