Magdalena's Issues

I don't know if we have ever listed to everyone all the little issues that Magdalena has in addition to the big right coronal craniosynostosis (that is now theoretically resolved post her June 29 surgery).  Most of them are related to the craniosynostosis, but the one we were scanning for today is not.  Here is the short list:
possible occult spina bifada / tethered spinal cord, torticollis, plagiocephaly, possible early astigmatism, cosmetic eye asymmetry.  Apologies in advance for the extremely long, picture-less post, but I did want to get all this info out there, if only for our family to remember for years to come. :-)

Today Magdalena had a full spine sedated MRI.  She has a very small dimple on the left side at the top of her bottom that the neurosurgeon (Dr Selden who helped in the craniosynostosis surgery) said has a 10% chance of being an occult spina bifada.  Though we had an ultrasound to check for this condition and it came up negative, Dr Selden was adamant that only the MRI would be able to discern truly if she has this or a tethered cord - like some tissue tied to the spine that should not be there.  Either way, we'd have to correct with surgery.  However, the symptoms are: difficulting voiding (no problems there), lack of lower body strength (again, no issues), and possibly difficulty with gross motor skills - true, she is not yet crawling, but it's not late enough to guess whether this is the reason.

At any rate, the MRI went quite well.  Though they numb all 4 appendages (both hands and both feet), Magdalena's vein on her left hand was easily found, and the nurse did not have to poke her several times to get the IV line in.  Both our wonderful nurse and the anesthesiologist told me that the sedation medication PROPOFOL ordered would cause her to go to "sleep" within a few seconds, but I was unprepared for witnessing literal interpretation of this - thinking that it would take 10-30 seconds.  Quite literally, once they had injected the PROPOFOL and they said it would sting a little, she cried for TWO SECONDS and was out.  I am not kidding.  TWO SECONDS.  I barely had time to shush her even once!  It was quite amazing.  The drug put her in a sedated state that mimics sleep, but apparently is not like a restful sleep.  They said she would still nap later in the day, and she did.

The MRI took an hour and a half, and as soon as they called me back, Magdalena was cognizant (though drowsy) and able to nurse.  She was amazing - recovered to being able to sit and eat the baby oatmeal I brought for her within 45 minutes of coming off the IV.  They didn't even have to give her extra fluids because she nursed so well.  What a trooper!

As for the results - Dr Selden is out of the country until August, so the office assured me they would see if a nurse practitioner could read the results and call me on Monday to tell me of them.  I'll keep everyone posted.  Hopefully he/she will be able to see whether there is an issue or not, and I won't have to wait till August and try to bug Dr Selden from China.  

Next up today was a follow up on another issue:  Magdalena's torticollis.   This one is related to the craniosynostosis - Magdalena has the tendency to tilt her head to the left.  This is immediately apparent in almost every picture we have of her, though I did notice that before she was holding her own neck up, she did not seem to have the issue, which leads me to believe that it was not congenital (i.e. she was not born with a shorter neck on one side), rather it was learned due to the shape of her head.  Now that her head shape is reasonably resolved, she is still in the habit of tilting her head.

Two weeks ago, we had our first Physical Therapy appointment, and the PT said that her range of motion (ROM) is great - no issues there.  The muscles in the left side of her neck (the side that she tilts towards) are a little tighter than the right, so I have been trying stretching exercises to help with that.  And other than that, we hold her in a certain way (facing away from you, in a side-lying position, with the child’s LEFT ear resting against your LEFT forearm, and your RIGHT arm between the child’s legs and support the child’s body), as well as put pressure on her right rib cage while she is sitting to force her to tilt her head back to the normal.

I think that she has been getting better - seems to hold her head straighter in her feeding chair, and when sitting and standing.  But it is not perfect, and I was looking forward to her follow up visit today.  She was also supposed to receive and be fitted with a tot collar.  This is basically two tubes and some PVC that wrap around the neck/upper chest and hold the head to the normal position.  I really think that wearing this for most of the hours Magdalena is awake will really help get her out of the habit of tilting her head to the side. 

Sadly, though, the PT had an emergency and had to cancel our appointment at the last minute (we finished with the MRI at 11:30, and the PT appointment was at 1:00.  It was canceled at 1:15).  By 1:30, they had rescheduled us for this coming Monday at 10 am, so I will be back to OHSU for the 10th time in seven weeks literally the day before we return to China.  At least I don't have to postpone our return!

The last issue that Magdalena has is her plagiocephaly.  This is the flattening on the back right side of her head.  Again, this was caused by the craniosynostosis, but made worse by the fact that she constantly returns to the position of back sleeping with her head tilted such that the flat spot is down.  Plain old physics tell us that this is perfectly rational, however it is NOT the best position for allowing the spot to naturally and gradually reform to be rounded.

I was very successful while we were in China in getting her to sleep on her left side such that the entire right side of her head was exposed up.  However, since we've been home, her sleeping patterns have been thrown off by many things (jet lag, hotels, surgery, new rooms in Portland and Eugene every few days, mid-night wakings for last-minute feedings before pre-sedation starvation) - and I often find that though I put her to sleep on her side, she often reverts to the back/flat spot sleeping pattern.  I am hoping that our return to China and her "normal" bed and routine will restore her to a more restful and consistent sleeping pattern.  Dr Kuang did say in Magdalena's post-op appointment just this past Wednesday that it could take months to years even for the plagiocephaly to correct itself.  The doctors will continue to monitor her, and maybe she'll get a helmet if things look bad in future.

Whew, you'd think I was done - but the last issue Magdalena has - and still has - is the remaining droop in her left eye.  Though Dr Kuang showed me on her follow up CT scan (which I will post once I get back to China as Alex's work computer is the only one we own with an old enough operating system to utilize the ancient OHSU software to view the images they provided on CD) - how Magdalena's eye sockets are now completely symmetrical, she said that probably the muscles and tissues are still not used to opening as wide as they "could" open, and M's head shape and facial features will continue to change over several months to come.  This could cause her to have an astigmatism which would affect her vision earlier than it would if her eyes both opened to the same degree, and we have been seeing an ophthalmologist at OHSU to monitor this situation.

In addition to the astigmatism, I did ask Dr Kuang whether she could have another cosmetic surgery to correct thie cosmetic eye asymmetry, and she said yes - but that we probably wouldn't want to do it until she was about 16.  To me, this would be very late in the game!  I don't want my beautiful little girl to be teased about her eyes until she is 16 years old!  As far as I am concerned, if this doesn't correct itself, we'll get it fixed earlier than that (unless the doctors - who admittedly know more than I on these issues - convince me that it is to her advantage to delay).  :-)  We'll just have to wait and see.