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.
Tuesday, October 16, 2012
Nasty Virus
We had a little turn of events with Logan's health this past week...unfortunately Logan landed in the hospital last Thursday. He was discharged Monday. The doctors think he had a virus.
Last Wednesday night Logan woke up with a fever and sounded like a toilet. I arrived home from work right around this time. I sent Joel back to bed and gave Logan a nebulizer and some Tylenol, he rested well the rest of the night. He woke up with a fever and as the day progressed, his fever remained, secretions began to thicken, and he became very lethargic.
I tend to downplay his symptoms, and that was just what I was doing. I thought, why take him to the hospital? We have everything here we need other than IV equipment. Thank god we have a home care nurse, Bonnie. She called the pulmonologists office and told them his symptoms. Shortly thereafter we received a call back from the nurse telling us to go to the ER. I began to cry. Not because Bonnie called but because I knew what this trip meant, a stay in the hospital. When Logan gets sick like this I often feel like I failed. I know I can't prevent every illness but it is still hard to accept how sick he is.
So, we arrived to the ER and proceeded through our normal ER routine...nebulizer, suctioning, IV, labs, chest X-ray, IV fluids, and medications. This time we were surprised, his chest X-ray had improved from the most recent a month ago. I was sure it was pneumonia. So we all suspect a virus. My daughter Lauren was vomiting and had diarrhea the weekend before but no fever.
So after a couple of hours waiting in the ER for a room upstairs, we arrived to the 6th floor. By the way, I am an ER nurse for those who didn't know so waiting four hours for a room seemed like no big deal. All the staff was so nice acknowledging the wait. I get it, hospitals are very busy these days and boarding patients in the ER is not uncommon. I was just thankful to have such skilled eyes looking over my son! Sometimes you just have to wait in line, even at the hospital!
We spent four nights in the hospital. We had planned to travel up north for our yearly family birthday celebration. My husbands side of the family has a lot of birthdays in the fall so we pack them all into a weekend celebration. It happened to fall over my birthday so I was very excited to say the least. Unfortunately the plans had to change. On Friday my husband came to the hospital with goodies and supplies for the weekend. We decided he and our daughter Lauren would still go up north as she had been looking forward to the party. No reason to torture her and keep her home. She would just sit at home and worry.
Joel happened to not feel well at the hospital so he cut his visit short. He and Lauren still headed out of town, but he battled the stomach virus all weekend. By Sunday, Logan was feeling back to himself so we stayed one more night just to be sure. Now back home to our own beds! I have to say, my favorite part of coming home is the enormous hug I get from Lauren!
While we were in the hospital, Logan's pulmonologist Dr. K came to see us. He was working in the ICU. We talked some more about our quest for a diagnosis. I updated him on the plan for DNA sequencing. I also told him we were taking Logan back to see the ENT to discuss having a procedure to tie off Logan's major salivary glands. He nodded his head and did add that an improvement in his secretions may only be temporary but he did not object to it. We talked about how it will continue to be very hard to keep Logan out of the hospital during illness. He urged me to pursue adding nursing care at night stating that we are going to get tired. My comment was, "I am already tired".
So now we are home and have more added to our plate. More medications, though temporary. More phone calls to make, and more decisions to make. I really wish I could be deciding on what baby gate
to buy to keep a busy walking two year behind than deciding on how to manage the schedule and demands required of a special needs child. Don't get me wrong, I wouldn't trade Logan in for a second but I am allowed to grieve over the loss of the typical developmental milestones. So now I must call our home care agency, start interviewing nurses, and contact our county case manager to request Logan be changed to a different waiver program in order for increased nursing hours to be covered. It may sound like a few simple calls but what it leads to is the bigger picture.
We will once again be letting strangers into our home to care for our child. We have been so lucky to have Bonnie and Marta as our nurses. I know we will find the right person but it still is not easy. I
have to also get past my fears of bringing in more caregivers. I have to let go of some control and trust in others! This isn't easy for me!
So we continue on our journey. Oh the places we will go...it's okay if that is the hospital from time to
time. It makes the journeys in between so much sweeter!
Last Wednesday night Logan woke up with a fever and sounded like a toilet. I arrived home from work right around this time. I sent Joel back to bed and gave Logan a nebulizer and some Tylenol, he rested well the rest of the night. He woke up with a fever and as the day progressed, his fever remained, secretions began to thicken, and he became very lethargic.
I tend to downplay his symptoms, and that was just what I was doing. I thought, why take him to the hospital? We have everything here we need other than IV equipment. Thank god we have a home care nurse, Bonnie. She called the pulmonologists office and told them his symptoms. Shortly thereafter we received a call back from the nurse telling us to go to the ER. I began to cry. Not because Bonnie called but because I knew what this trip meant, a stay in the hospital. When Logan gets sick like this I often feel like I failed. I know I can't prevent every illness but it is still hard to accept how sick he is.
So, we arrived to the ER and proceeded through our normal ER routine...nebulizer, suctioning, IV, labs, chest X-ray, IV fluids, and medications. This time we were surprised, his chest X-ray had improved from the most recent a month ago. I was sure it was pneumonia. So we all suspect a virus. My daughter Lauren was vomiting and had diarrhea the weekend before but no fever.
So after a couple of hours waiting in the ER for a room upstairs, we arrived to the 6th floor. By the way, I am an ER nurse for those who didn't know so waiting four hours for a room seemed like no big deal. All the staff was so nice acknowledging the wait. I get it, hospitals are very busy these days and boarding patients in the ER is not uncommon. I was just thankful to have such skilled eyes looking over my son! Sometimes you just have to wait in line, even at the hospital!
My sick and tired little boy :-(
We spent four nights in the hospital. We had planned to travel up north for our yearly family birthday celebration. My husbands side of the family has a lot of birthdays in the fall so we pack them all into a weekend celebration. It happened to fall over my birthday so I was very excited to say the least. Unfortunately the plans had to change. On Friday my husband came to the hospital with goodies and supplies for the weekend. We decided he and our daughter Lauren would still go up north as she had been looking forward to the party. No reason to torture her and keep her home. She would just sit at home and worry.
Joel happened to not feel well at the hospital so he cut his visit short. He and Lauren still headed out of town, but he battled the stomach virus all weekend. By Sunday, Logan was feeling back to himself so we stayed one more night just to be sure. Now back home to our own beds! I have to say, my favorite part of coming home is the enormous hug I get from Lauren!
Logan is back on the mend!
While we were in the hospital, Logan's pulmonologist Dr. K came to see us. He was working in the ICU. We talked some more about our quest for a diagnosis. I updated him on the plan for DNA sequencing. I also told him we were taking Logan back to see the ENT to discuss having a procedure to tie off Logan's major salivary glands. He nodded his head and did add that an improvement in his secretions may only be temporary but he did not object to it. We talked about how it will continue to be very hard to keep Logan out of the hospital during illness. He urged me to pursue adding nursing care at night stating that we are going to get tired. My comment was, "I am already tired".
So now we are home and have more added to our plate. More medications, though temporary. More phone calls to make, and more decisions to make. I really wish I could be deciding on what baby gate
to buy to keep a busy walking two year behind than deciding on how to manage the schedule and demands required of a special needs child. Don't get me wrong, I wouldn't trade Logan in for a second but I am allowed to grieve over the loss of the typical developmental milestones. So now I must call our home care agency, start interviewing nurses, and contact our county case manager to request Logan be changed to a different waiver program in order for increased nursing hours to be covered. It may sound like a few simple calls but what it leads to is the bigger picture.
We will once again be letting strangers into our home to care for our child. We have been so lucky to have Bonnie and Marta as our nurses. I know we will find the right person but it still is not easy. I
have to also get past my fears of bringing in more caregivers. I have to let go of some control and trust in others! This isn't easy for me!
So we continue on our journey. Oh the places we will go...it's okay if that is the hospital from time to
time. It makes the journeys in between so much sweeter!
Logan's night nurse Nicole made this for me and put it up on his door while I was sleeping. It happened to be my birthday during his hospital stay! What a nice surprise!
Last nap before the car ride home!
Tuesday, October 9, 2012
Pat on the back
Today I am proud of myself... my labor of love is being recognized as one of the top 100 special needs resources on the web by PhDinSpecialEducation.com.
PhDinSpecialEducation.com "is a site that provides information for anyone interested in educating those with learning disabilities, and other special needs. The site is specifically for prospective students considering a degree in special education, but we strive to give our readers useful information on a wide range of special needs topics."
If anyone is interested on checking it out, go to http://phdinspecialeducation.com/special-needs/. We are #75 under the parenting tab.
This blog has been extremely therapeutic for me and to know that others see it as a resource in the world of special needs is an honor! I am so lucky to have the support of our friends, family, and readers who we may not know.
It was not easy starting this blog. I wasn't sure if I should broadcast our journey for all to see. I do not call myself a writer and surely provide many gramatical errors for all to read!
Now I know the rewards it has brought our family. We are able to educate, inform, and share. My almost two year old son is an angel on earth who has brought enormous love to my life. He has inspired me and taught me the true meaning of unconditional love. I am so proud to share his journey with all of you.
Thanks for allowing me to share Logan's Story with you!
PhDinSpecialEducation.com "is a site that provides information for anyone interested in educating those with learning disabilities, and other special needs. The site is specifically for prospective students considering a degree in special education, but we strive to give our readers useful information on a wide range of special needs topics."
If anyone is interested on checking it out, go to http://phdinspecialeducation.com/special-needs/. We are #75 under the parenting tab.
This blog has been extremely therapeutic for me and to know that others see it as a resource in the world of special needs is an honor! I am so lucky to have the support of our friends, family, and readers who we may not know.
It was not easy starting this blog. I wasn't sure if I should broadcast our journey for all to see. I do not call myself a writer and surely provide many gramatical errors for all to read!
Now I know the rewards it has brought our family. We are able to educate, inform, and share. My almost two year old son is an angel on earth who has brought enormous love to my life. He has inspired me and taught me the true meaning of unconditional love. I am so proud to share his journey with all of you.
Thanks for allowing me to share Logan's Story with you!
Monday, October 8, 2012
Grandma Zacher
Today was a somber day. We honored the life of Joel's Grandma, Rose Zacher. She passed away Monday October 1st. We gathered with family and friends this morning to celebrate her life. I did not realize how far reaching her love was. She had many friends and family sharing story after story of her warmth and kindness. She was a woman that people looked forward to spending time with. I did not have an opportunity to get to know her well because of dementia but I felt as though I knew her from all the stories I heard over the years.
Funny story... Joel and I were heading in the van with the kids up north yesterday. Joel was the driver and I was navigating. Not a good combo! I was engrossed in a game on the iPad and next thing I know, Joel is asking me if we missed a turn. Oops! We ended up having to go about 45 minutes out of the way to get to the hotel. We turned onto the final leg and happened to be two cars behind Joel's sister. Then we passed through the town where Grandma Zacher lived and passed by her house. Joel lit up when we drove through the town. You could see the memories flooding back. The last time we had been on that road was on our way to our honeymoon. Joel thinks Grandma Zacher sent us on that path and I agree! I am a great navigator, I swear!! Except for my other screw up the next day and we can't attribute that to anything but my ditsy brain.
So, today was tough but we know she is in a better place. Like I said, I did not know her well but I married into a family that she helped cultivate and for that I am thankful. She will be missed.
Funny story... Joel and I were heading in the van with the kids up north yesterday. Joel was the driver and I was navigating. Not a good combo! I was engrossed in a game on the iPad and next thing I know, Joel is asking me if we missed a turn. Oops! We ended up having to go about 45 minutes out of the way to get to the hotel. We turned onto the final leg and happened to be two cars behind Joel's sister. Then we passed through the town where Grandma Zacher lived and passed by her house. Joel lit up when we drove through the town. You could see the memories flooding back. The last time we had been on that road was on our way to our honeymoon. Joel thinks Grandma Zacher sent us on that path and I agree! I am a great navigator, I swear!! Except for my other screw up the next day and we can't attribute that to anything but my ditsy brain.
So, today was tough but we know she is in a better place. Like I said, I did not know her well but I married into a family that she helped cultivate and for that I am thankful. She will be missed.
Wednesday, October 3, 2012
Logan's New Wheels!
The wait is over...
Drum roll please...
Logan's wheelchair has arrived!
After a long day of custom fitting last week, Logan has a fabulous new ride. He went from being a baby in a stroller to a little boy in his chair. The wheelchair is more than I imagined! A place for him to play. A mode of transportation. And a way for him to connect with his friends and family.
He is being seen. He no longer hides in a stroller or an infant car seat. He is up for all to see and what a handsome sight that is!
He is being seen. He no longer hides in a stroller or an infant car seat. He is up for all to see and what a handsome sight that is!
Logan... oh, the places you'll go! I can't wait to see.
The journey will have it's ups and downs but I know you will teach us all a lesson or two along the way!
Your independence will soar. Your confidence is sure to shine!
P
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