october updates

Savannah had a CT of her skull per the plastic surgeon's request-he didn't see any need for surgery (he was afraid her skull bones may be closing too early). The only things he mentioned was that her frontal bone was already fused which can be fused in a typical kid her age anyway. Also, the only abnormality he saw was the orbits (eye sockets). He wants us to follow up with neurology to make sure they're not seeing anything he isn't.
We met with genetics as well. They didn't tell us much more than we already knew about PKS-just gave us more of the scientific side to it. Her syndrome began at conception-the 12th chromosome-if I'm saying this correctly-rather than splitting off one chromosome into the egg and the other into the sperm the chromosomes stayed together and chose the egg or sperm and duplicated. Confusing? They reassured me that there was nothing I could have done to prevent it-just a fluke thing. 47% of Savannah's cells are affected with the syndrome, however, that doesn't determine what she will be capable of doing in life. The chromosomal error can be grouped in larger amounts than in other parts of her body. For example, a larger amount of her cells in her legs could be affected more than in her arms. So, as we've known from her 12th day of life, it is up to God and Savannah what she will do. Time will tell. For the most part, I'm okay with the card we have been dealt, I try to see it from the positive side. However, there are the days when sadness or anger creeps in my mind. It rips my heart out watching her struggle some days. Jon said the other day just saying out loud that she should be crawling around by now-but her body won't allow it at this time. I hate days when reality sinks in...

october

This month has been crazy...very busy. Little miss is taking it well tho...on days when I think she will be exhausted from the previous day's doc appt she surprises me by being very active. We have seen an ENT doc in Lexington who is recommending hearing aids. However, Savannah must have a sedated hearing test in the near future to get the most accurate readings so the audiologist will know where to set the hearing aids.
  We also finally met with the plastic surgeon regarding her cleft palate. To sum it up, he isn't going to repair it unless she develops speech or takes a bottle. He doesn't want to put her through a major surgery if it isn't going to benefit her.
  We met with our new surgeon regarding her anoplasty surgery. This is the surgeon that, along with Jesus, saved Savannah's life post Nissen explosion. We wanted a second opinion from her since I've not always agreed with her prior surgeon on everything. This new surgeon is more realistic when it comes to PKS and what it entails for Savannah's life. We have all come to the conclusion that she will have a colostomy and if and when we decide to go for it she will have the anoplasty to fix her imperforate anus. It was the same story as with plastics...why put her through a very major surgery if it will not benefit her such as for potty training. Savannah already has difficulty healing so we figured her best option was the colostomy because it's a much easier surgery and recovery. I'm still not sure as to when this surgery will take place...the surgeon doesn't seem to be in any hurry due to the fact Savannah isn't having issues with her stools. So, we are relieved in a sense from when we left Kosairs to bring her home. We knew leaving that day she still had a very difficult road ahead of her, but for now that road is becoming easier. There are still a couple of appointments to go this month...so I will update when I'm not too busy. 😊


on a side note...please keep in prayer Savannah's PKS sister, Ava. She lives in New Zealand and is currently in the hospital fighting for her life with pneumonia...but if I've learned anything about these kiddos they are the toughest and put up the best fight!