Friday, July 20, 2012

Liam's Medical updates, more camping pictures

So I haven't updated about all of Liam's medical stuff in a while.... so here goes! We met with a plastic surgeon yesterday to talk about possible repair of Liam's sub-mucous cleft palate, she said the same as his ENT (ear, nose throat) doctor...we will have to wait until he can produce enough sounds to even possibly come up with a surgical plan, best bet for now is continued speech therapy, she will see us in a year. I spoke last week with the nurse in the GI department, she said his doctor said his Gallbladder is functioning enough to continue just on the medication he has been on. I told her I thought the pharmacy had messed up for several months on dosage (under amount) and she immediately confirmed adding "I was SO mad at them!" lol, so that is another reason to continue on the medication...perhaps it really will work at the correct dosage. It certainly has helped his digestion/poop issues, so we will be continuing to monitor and in another few months perhaps retiring that medication. I received a letter from our insurance stating that the testing the genetics doctor wanted does not need a pre-auth and yesterday received a packet in the mail from that office with the lab script. So next week, we are back to Children's for Liam to be poked again for blood. He is requesting, 5 different things. The labs include a lipid panel as well as dehydrocholestrol  (which Liam must fast for) this is because I brought up the fact that Thomas and I have very low combined cholesterol levels and so if Liam's is also low we may need to add it as a supplement (ironically I learned that we produce 60% of our own cholesterol from our Liver (bile producer which with interrupted can cause Gallstones) and there are several genetic conditions involving low amounts which we have not tested for, so we'll see if anything comes up with this lab. The next test is the SNP microarray (this is the genetic test, we had a different microarray previously done to find the duplication on the 18th chromosome, this one will drill down even farther and may or may not give us new info). Then he ordered a Comprehensive Metabolic panel including Uric Acid (this will check for functions of major organs, including kidney's, heart, and liver), and the last lab for Transferrin (I haven't read a ton on this one, but from my understand it will also show a different kind of anemia where the iron counts appear normal on some tests but the "free" iron for use is low, not sure if I understand it all quite yet but I'm reading up on that one now). As far as Liam's overall health, he is grinding his teeth frequently, which in the past has always been a sigh of pain somewhere... yesterday at the plastic surgeons office he also had a low-grade fever (I was completely unaware until they took his temp). We go back to the doctor to check his asthma issues next week with our new pediatrician, our first and the one I LOVED retired last month.  Okay, I think that covers it, I Know WAY boring for most of you but for any family members who wonder what medical things we do to try and help Liam....well you can see it can be extensive at times, and sounds quite foreign half the time too lol

With all this, I'm putting some more photos from our camping trip in, for me these pictures put life back into perspective! When I look at these photo's I remember to....

play with family and friends often, they won't be around forever

Be content in life, its to short to be anything else

Value the intricate lacing of relationships

Not be afraid of breaking tension by offering a helping hand

reflect and learn from life lessons, not dwell on the them, but grow from them

have fun even if no one is watching

Be still, stay calm and let life flow