Back to the Beginning

So, it seems the blog's a hit. Relaying the events of yesterday's appointment this way was so much easier on me, as long as all of you are reading. If you are, just post a quick comment on this, so I know who is...that way, I'll know who I still need to call personally.

So, I thought that tonight I would go back and give you all a break down of Colin's condition. I know that it is hard to keep track of, and after realizing how many of you I hadn't kept up to date, I just wondered how many of you even had a full grasp of what all he has been dealing with over the last six years. Also, I think that this blog may quickly become a testiment to the life of my children, so I would like to include as much as possible. And, I think it's helpful to see it all in writing.

So, at six months, Colin was diagnosed with GoldenHar Syndrome and Hemifacial Microsomia. He has been affected very mildly by both. Google either of them and you will quickly agree. The GoldenHar affects him in the following ways: He has scoliosis(curvature of the spine of 28%) and hemivertebrae (his vertebrae, rather than being one bone, are made up of multiple, mis-shapen bones); he was born with atresia (closed ear canals - both inner and outer) and with what the doctors termed a skin tag...basically an ear without any cartilidge; he has a weak digestive system (although time seems to have taken care of this issue on its own); he also has a sacral dimple (which is located slightly above his bum and typically is a sign of abnormalities in the spinal cord); thus he has an abnormal spinal cord...his cord is filled with a spongy material that is unlike the clear liquid that fills a normal cord, (so far no complications from this, but one more thing to keep an eye on), he also has a flipped heart (basically the front is facing the back of his body -- but it as well is functioning fine); he has Microphthalmia (his left eye is smaller than the right) and his vision is a little off, but does not need correcting yet, just watching; he also had motility disorder, which is an decreased ability of spontaneous movement in this eye, but by the grace of God that to has improved over time. The Hemifacial Microsomia (literally means half-faced smallness) affects him in the following ways: the left side of his entire face is structurally smaller than the right, although it isn't noticable to the naked eye, at least I don't think it is; he has a soft upper palate (the roof of his mouth), which makes him more susceptable to strep throat, ear infections, sinus infections and conditions often associated with Asthma as the palate doesn't close firmly against the back of his throat when he opens his mouth so therefore, it is much easier for bacteria to enter these areas. It also led to early feeding problems. Smiles for those who struggled through those feedings with us; and causes him to snore (which his mom finds very cute); it is also causing a shift in his lower mandible (jaw bone) to the right, for which we have just seen a new specialist and aren't sure what all will be in store for him in this area yet. So there you have it I think. Although it is highly possible that I missed something.

GoldenHar Syndrome, as I have discovered over the years, is unbelievely complex and often varies from child to child. Most of the children affected do not have all of the symptoms, but are affected by at least 3 to be considered affected. Not all kids with GoldenHar have Hemifacial Microsomia, but it is very common for them to have both as I have come to discover as well.

Quite a lot, huh. And I know that everyone reading this most likely just discovered something they didn't know or forgot about. It is a full-time job keeping track of it all (thank goodness I no longer have a full-time job!) and we often have a hard time remembering it all as well. So hopefully this helps. That's the first time I actually wrote it all down in one place...it's a little overwhelming, huh?

So, now time for the blessings, and if you've already taken the time to look either of these conditions up, you are already counting them:
1. his speech is not impaired
2. he developed physically at a normal rate: rolling, sitting, walking
3. he is overly intelligent and suffers from no signs (obviously) of mental retardation
All of these are the scariest symtoms of the condition, although there are many more, and I am thankful everyday that he was unaffected by these symptoms.

So there you have it. I plan to give a breakdown of his corrective surgeries etc as well, but will save that medical lesson for another day!

Today was a great day for all...picture day at school for Colin; no laps for being difficult at playtime! which he was very proud about; and an all around calm day for Chloe and I, which included a much needed lunchtime visit from friends! Thanks guys and we need to do it again soon. It was especially nice to see K...missed you more than you know. Thanks again for making time for me!

Once again, if you're reading, please let me know in one way or another so that I know who my audience is out there.