Today our family visited two very important specialists: ENT & Genetics. We started with genetics where we signed consent for Exome Sequencing. It is a confusing topic but from what I understand they will take blood samples from Lauren, Logan, Joel, and I and send it to a lab. They will then run Logan's DNA looking for mutations which may explain Logan's symptoms. They will use our blood samples to compare with his as needed. The genetic counselor said they will first test for about 4,000 genes that are known and if no answers, they will run it for genes that have been identified in the human genome but go unnamed and unexplained as to what they are. I still don't quite get it but what I do know, it will take around seven months to get results. We may come away with a defined answer, an undefined answer, or nothing at all. What I know is, we are knocking down a lot of time searching for a diagnosis by doing this one lengthy test.
Both the kids did great for their blood draws. Lauren was especially brave. She had no idea it was coming and had no clue what it was for. She didn't even ask why. She just kept saying "no more pointies mom". She is so amazing and doesn't even know it. I hope someday she understands how amazing her gift to Logan was today.
Next we went across the hall to see Dr. S, ENT. I scheduled this appointment to discuss the possibility of going ahead with ligation of Logan's parotid glands and excision of the submandibular glands. In English this means tying off the glands above the mouth and removing the glands under the jaw. The goal of this procedure is to decrease the amount of saliva he produces in order to decrease the amount of aspiration. Dr. S said it is about 70-80% effective and results are seen quickly. There is always a risk of infection for which they would put him on antibiotics. Post op pain which is generally controlled after discharge from the hospital. He said there would be a one or two night stay.
Dr. S. commented that he was surprised we waited this long! I was a little confused as he did not seem to have an opinion either way when we discussed this in April. But I can say I am glad we gave it a good try with medication interventions first in order to know that we were ready and in the right mindset for this surgery.
We also discussed the chances of the procedure not working. Even with removal and tying off of the major glands, he will still have all of the salivary glands in his mouth producing saliva. The discussion then moved to a tracheotomy. This would be creating a new airway through his neck where he would breathe from to help significantly decrease aspiration problems. This remains a last resort but is still on the table. He said we should know in 4-6 weeks after the salivary procedure if it worked and then can proceed from there.
So after the discussion, Joel and I decided to go ahead with the surgery. We hope this will improve his quality of life, decrease the need for oxygen, decrease the suctioning, as well as decrease the pneumonia's. Temporary pain for a hopeful long term gain. I feel as though we have been doing the best we can to manage his care and do what is best for him. We have been so fortunate to have time to make these decisions. That is not a luxury many parents have with sick kiddos.
Surgery is scheduled the week after Thanksgiving. Please keep Logan in your prayers in the coming weeks. We need to keep him healthy in order to get the surgery. He will also need your prayers to guide him through his surgery and recovery. I can't imagine how scary these things are at his age. And lastly, could you throw in a couple of prayers for Joel and I? We could use a little uplifting too! These times tend to be the hardest.
Wednesday, October 24, 2012
Tuesday, October 23, 2012
Birthday Boy!
Logan turned 2!
He was pretty tuckered out by the evening. Rough day of teething. Wish he had been more himself and in less pain but I guess when you become two years old those painful molars just have to come in!
Mom, I'm so tired!!
Wait a minute, toys?
Silly sister, she has been waiting for Logan's birthday all week. She has been so tempted to open his presents!
It's cake time!
A little taste for Logan
Wheew, what a long day!
How I feel now that he is two
I have to admit, there were many days that I worried my son would not live to see this day. I am so blessed that he proved me wrong! Today he turned two!
Today he became a toddler. No longer a baby, but he will always be my baby boy. My little Bubba!
Today I was slapped in the face with a lot of mixed emotions that I had no idea were brewing.
This day has brought great joy but also a deep sadness. As a parent, I find myself comparing my child to others his age. I think back to our daughter at this age remembering her firsts as a two year old. Logan does not fit that mold. He is on a path all his own but I can't help but compare.
I can't help thinking, what would he be doing or saying right now had he not had his delays. I hate that I do this but I know I am not alone and I know this is normal to feel. So I grieve. It does pass or just somehow hides. I know this will not be the last time I will feel this way. I can say right now, I am not angry. I am just sad.
This too will pass, but right now I am going to allow myself to feel this way. Attempting to shut off the feelings does me no good. Often times I have people ask "how do you do it? How can you still smile and keep your spirits up?" Guess what, I fake it until I make it!!! I smile through it knowing it will get better. I made a decision some time ago that this was not going to get the best of me. I will continue to have waves and sometimes typhoons of emotions but it will pass. The battles may not be easy but I will pick them wisely and hopefully I will learn something along the way.
I share this post at the same time as my post of Logan's photos of his birthday. I want to show that he is a thriving, handsome two year old boy with challenges of his own and that being a parent of such a special boy is not always easy. I do not write this post to bring down the celebration but I want to make sure to shed light on the difficulties that I face as a parent. These are different than most but all parents share in the path of raising kids and this path is full of many ups and downs. Birthdays are a time to celebrate, be thankful, and acknowledge the journey of life.
To my family, friends, and colleagues...please continue to share stories of your lives and your children. I want to remain connected and not isolated and I want to share in your joys and sorrows. I am never too busy to listen!
On a positive note, in case you forgot...Logan is now 2! My miracle son, who brings joy to my life everyday, is an angel on earth. He is a pure piece of heaven!
Stay tuned for some more updates on the medical side of our journey. Logan has a couple important appointments this week.
Today he became a toddler. No longer a baby, but he will always be my baby boy. My little Bubba!
Today I was slapped in the face with a lot of mixed emotions that I had no idea were brewing.
This day has brought great joy but also a deep sadness. As a parent, I find myself comparing my child to others his age. I think back to our daughter at this age remembering her firsts as a two year old. Logan does not fit that mold. He is on a path all his own but I can't help but compare.
I can't help thinking, what would he be doing or saying right now had he not had his delays. I hate that I do this but I know I am not alone and I know this is normal to feel. So I grieve. It does pass or just somehow hides. I know this will not be the last time I will feel this way. I can say right now, I am not angry. I am just sad.
This too will pass, but right now I am going to allow myself to feel this way. Attempting to shut off the feelings does me no good. Often times I have people ask "how do you do it? How can you still smile and keep your spirits up?" Guess what, I fake it until I make it!!! I smile through it knowing it will get better. I made a decision some time ago that this was not going to get the best of me. I will continue to have waves and sometimes typhoons of emotions but it will pass. The battles may not be easy but I will pick them wisely and hopefully I will learn something along the way.
I share this post at the same time as my post of Logan's photos of his birthday. I want to show that he is a thriving, handsome two year old boy with challenges of his own and that being a parent of such a special boy is not always easy. I do not write this post to bring down the celebration but I want to make sure to shed light on the difficulties that I face as a parent. These are different than most but all parents share in the path of raising kids and this path is full of many ups and downs. Birthdays are a time to celebrate, be thankful, and acknowledge the journey of life.
To my family, friends, and colleagues...please continue to share stories of your lives and your children. I want to remain connected and not isolated and I want to share in your joys and sorrows. I am never too busy to listen!
On a positive note, in case you forgot...Logan is now 2! My miracle son, who brings joy to my life everyday, is an angel on earth. He is a pure piece of heaven!
Stay tuned for some more updates on the medical side of our journey. Logan has a couple important appointments this week.
Wednesday, October 17, 2012
Rollover, rollover!
Guess what?
Logan rolled from his stomach to his back tonight! This is a skill he lost after getting his feeding tube a year ago. He had mastered rolling from back to stomach but would get stuck like a beached whale!
I came home from work this evening and Joel said he must have rolled over because when he had seen him last he was on his stomach and when he returned to the living room he was on his back. Before I knew it, he was showing off in front of me! No wonder he has been so crabby on his tummy lately! He was trying to roll. I am such a proud mommy tonight! The whole family was cheering him on. I hope he knows how proud we are! He did tucker out quickly so the rolling stopped but I can't wait for tomorrow. I will attempt to videotape him and put it on the blog.
If I owned a newspaper, this would be front page news! Mastering new skills like this are no easy feat for Logan. He is such a determined little boy. I am amazed by his strength everyday.
Logan rolled from his stomach to his back tonight! This is a skill he lost after getting his feeding tube a year ago. He had mastered rolling from back to stomach but would get stuck like a beached whale!
I came home from work this evening and Joel said he must have rolled over because when he had seen him last he was on his stomach and when he returned to the living room he was on his back. Before I knew it, he was showing off in front of me! No wonder he has been so crabby on his tummy lately! He was trying to roll. I am such a proud mommy tonight! The whole family was cheering him on. I hope he knows how proud we are! He did tucker out quickly so the rolling stopped but I can't wait for tomorrow. I will attempt to videotape him and put it on the blog.
If I owned a newspaper, this would be front page news! Mastering new skills like this are no easy feat for Logan. He is such a determined little boy. I am amazed by his strength everyday.
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