Updates on SiSi

This is a long overdue update on some of Siena’s recent doctor’s visits. She had quite a few appointments in March that I did not get a chance to write about…

Siena’s 1st Sleep Study since starting Growth Hormone was the first of these appointments.  She is such a trooper, letting the techs wire and wrap her up… probably more than most of us could tolerate.  She definitely did not appreciate the nasal cannula around her face and in her nostrils, but besides pulling it out a few times through the night, she learned to deal with it.  I am very happy to inform you that the results came back normal, with no significant apnea to report!! After our visit with Dr. Miller next week (YAY!), we will know when the next Sleep Study must be done.  

Next, we saw Dr. Chang for Siena’s annual Cardiology appointment. Siena learned about the blood pressure cuff at these two appointments and decided, pretty adamantly I might add, that she does not care for that thing!  We had some tears during that and the EKG, but she laid there very nicely during her Echo.  Sister Isla was there to help distract her too, which was a “help” :)…..  Last year, Dr. Chang found that there was an “innocent” murmur and this was again the case, but only heard when Siena was laying down.  He believes this is from the slight narrowing in her Pulmonary Valve or very mild Pulmonary Valve Stenosis.  This narrowing was discovered at her visit last year and will be monitored annually, but a new discovery this year was that there is now moderate dialation of the main Pulmonary Artery.  Dr. Chang does not believe this is being caused by HGH and said it is not as common as dialation of Aortic side.  He will monitor this annually, as well, but said we do not need restrict Siena’s activites….however, if down the road if she complains of chest pains to take it seriuosly.  He also would like us to report any information Dr. Miller may have on HGH and Cardiology.   Siena was 28 1/2 inches and 18 lbs at this visit on March 29th.  

After this appointment we tried to take Siena for her blood tests, but had no success.  Norlanco suggested we take her to the lab at Women & Babies, so we decided to go the following week.  It was good we waited, because at her visit with Dr. Gottlieb (neurologist) on April 2nd, we were given another order for more blood tests to check Kepra levels (seizure medication).   The visit with him went well and he is very happy with her development….we discussed Siena’s episodes of drowsiness at breakfast time and he does not believe this to be seizures and said to send him videos of any of these episodes…..we did not change Siena’s dosage of Kepra at this time… we will see him again in three months.  

The lab at Women & Babies was able to draw Siena’s blood on April 5th and we really loved the tech that helped do this!!  It was a lot of blood to take from our little peanut and we were thankful to have someone who knew what they were doing.  These blood tests are to check her levels and see how they have changed since starting Growth Hormone.  We will discuss these levels with Dr. Miller next week.  The Kepra levels look good according to Dr. Gottlieb (who personally called us with the results- nothing beats a personal call from your child’s doctor).

I will be sure to post about our visit with Dr. Miller as soon as I can!!!  

ps… please don’t forget to vote for PWS video!!!  http://communities.challenge.gov/submissions/6800-take-one-small-step

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