As an 18 year old, I began working with adults who had special needs. It was a field I never imagined myself working in, but just happened to fall into to. For those of you who care for someone with special needs, you are aware of the extreme demands that are involved with taking care of them. I never imagined the hard work it was. Assisting them with everything we take advantage of such as bathing, clothing, toilieting, eating, walking, talking, doctors appointments, ensuring they are healthy and take their meds. The list goes on and on. Shortly after I began working with Special Needs people, I knew I had found my calling and wanted to do as much as I could for them.
In 1996, I began my college career as a Social Work student at the University of Cincinnati. My goal was to of course work with individuals with special needs. In 1998, I graduated with an Associates Degree in Social Science at the University of Cincinnati. That same year, I transferred to Northern Kentucky University where I would persue my education in Social Work. This was a very busy and stressful time for me as I worked full time taking care of individuals with special needs, interning part time at a nursing home, and keeping up with the duties of a full-time student. I did this for three years until I finally got my bachelor's degree in Social Work.
After graduating, I did just what my goal was and that was to further my career in the special needs field. I became a supervisor of a small company that provided supports to individuals with Developmental Disabilities. My duties were to ensure staffing and appropriate training for all staff to adequately and safely work with the individuals in their own home. Not only did I know I found my calling but I adored everyone I worked with. I especially fell in love with my clients.
People I spoke to always told me I had a special heart and that they could never take care of someone with extensive needs. One comment I hear a lot, "I never know how to act around someone like that". Well first of all, I don't really see people with Special Needs much different than you or I. They may need more help than others, but hey, don't we all at times. We all have our handicaps whether it be mentally, physically, or emotionally. As for how to act around someone with Special Needs, I always tell people "It's easy, just be yourself because unlike a lot of people in this world, one thing they don't do is judge you" I don't have to worry about what they are going to think if I don't have my makeup on or my hair done one day. Your loved because of the care and the love that you show towards them.
At the age of 32, I gave birth to my first child, a daughter named Gabrielle Jane. The ironic thing is that three days after she was born we found out she had a rare medical condition called Hydranecephaly. That's right, I gave birth to a daughter with special needs. I must admit it was a very emotional time for me and my family. I was very experienced when it came to caring for someone with extensive needs, but I never dreamed that I would one day have to care for my own child who has special needs.
After we found out our daughter's diagnosis, our life changed so drastically. We were told to never expect much out of our daughter, first of all because she would never make it to one and second of all....she would live the life of a vegetable. She would have no awareness, never know who we are, never hear nor see, and no consciousness. Although, we were told all this by the people we trusted the most (medical doctors), we wanted to take her home with us and to care for her as if she were a typical child. We did just that.
Gabby has been given so much love by so many, many who have never even had the oppurtunity of meeting her yet. She is stimulated daily and loves to play, laugh, and listen to mommy and daddy do silly talk. She loves her family and is very aware of who we are and her surroundings. We will continue to give Gabby all the love in the world and will continue to stimulate the 25% of brain matter she does have.
I must admit that being the parent of a Special Need child is not easy. It is amazing how you can laugh from joy and cry from sadness so many times in one day. I find myself laughing at the funny things my daughter does such as her laughing, making noises, playing with her toys, learning something new, and the numerous funny faces she makes. Then I find myself overwhelmed with sadness that kids younger than my daughter are doing things she should be doing such as walking, talking, running, crawling, eating solid foods, potty training, sucking their thumbs, and the fact that I can't chase my daughter around because she is getting into everything. Then I begin to be thankful for the fact that my daughter is still alive, and in the long run that is all that matters to me. I never realized the emotional roller coaster that never seems to end. The constant struggle with not only keeping your child healthy, but keeping yourself healthy as well. I am so grateful to have met a wonderful group of friends who know all too well what this roller coaster ride is all about. Although, I have wonderful family and friend support, there are just some people who seem to know exactly how you feel and the struggle everyday brings just to keep you sane. I'm going to end with one of my favorite quotes:
You've developed the strength of a draft horse while holding onto the delicacy of a daffodil ... you are the mother, advocate and protector of a child with a disability." -Lori Borgman
Wednesday, October 27, 2010
We're Home!!!
Ok, so it has now been a week since our arrival home from the hospital. So far things have been going well. Gabby appears to be more alert after her surgery and is not sleeping as much. We are hoping that within six weeks, the shunt will have had long enough to drain the excess fluid that was causing the pressure. Perhaps Gabby will even become more alert and more active.
Gabby met her very first friend who has the same condition as her over the weekend. His name is Andrew and he lives with his loving family in another state. They travel to our area often so we are hoping for more visits. Her friend was trying so hard to get Gabby's attention, but she was just way too sleepy and didn't respond that much.
Gabby saw her specialist this week at Children's and it looks as if the valium she is on for spasms has caused all her muscle tone to go away. In one way it is good because tight muscles in kids causes serious issues with growth and development. If they have too much tone, then they are at risk for dislocations along with other numerous growth issues. The bad news is that the valium has done its job too well and she no longer has muscle tone in her tongue or other areas of her body. Due to losing the muscle tone in her tongue she is having difficulty eating and now has a feed tube in order to get her nutrition. She will be seeing a feeding specialist and an Occupation Therapist weekly to help try to strengthen her muscles.
I am just so grateful that we are back home and getting back into the groove of being at home. There's no place like home <3
Gabby met her very first friend who has the same condition as her over the weekend. His name is Andrew and he lives with his loving family in another state. They travel to our area often so we are hoping for more visits. Her friend was trying so hard to get Gabby's attention, but she was just way too sleepy and didn't respond that much.
Gabby saw her specialist this week at Children's and it looks as if the valium she is on for spasms has caused all her muscle tone to go away. In one way it is good because tight muscles in kids causes serious issues with growth and development. If they have too much tone, then they are at risk for dislocations along with other numerous growth issues. The bad news is that the valium has done its job too well and she no longer has muscle tone in her tongue or other areas of her body. Due to losing the muscle tone in her tongue she is having difficulty eating and now has a feed tube in order to get her nutrition. She will be seeing a feeding specialist and an Occupation Therapist weekly to help try to strengthen her muscles.
I am just so grateful that we are back home and getting back into the groove of being at home. There's no place like home <3
Tuesday, October 19, 2010
Almost Home!!!
Well after a very long eventful stay here at CCHMC, we are proud to say that it is about over. Plans for discharge are already in affect and it looks as if 10/20/2010 will be our date of discharge. I have been working with Home Health to get things ready for Gabby's arrival home. Today, mommy was trained on how to use a feed pump and this will allow Gabby to be fed continuously at night through her feed tube. Her night time feed will begin at 5 pm and will go until 7 am. She will be fed 45 ml (ounce and a half) every hour. During the day she will be fed by her feed tube twice and each time she will be given 6 ounces. I will still be able to try to feed Gabby by mouth and what she doesn't take by mouth will need to be given in her tube. We are hoping that the tube placement will be temporary, around two to three months. Gabby is able to still take foods by mouth, but she is refusing to eat. The dietician wants her to be a more routine eater and that is another reason for the feed tube. As many of you are aware, Gabby has always been the type to eat when she wants. She will eat great some days and then will go several days where she doesn't eat well. She has always gained weight but the dietician says she needs to have a more scheduled feeding habit. I am still quite confused with the fact that the dietician says she is too chunky, yet they have her on a higher calorie formula and a higher daily intake then usual. In my opinion, I think that would make her gain more weight.
It has now been 24 hours since Gabby's surgery and she is still worn out. Her doctor stated that we shouldn't be too concerned as she has been through a lot. We are hoping that when she gets home and back in her familiar environment that things will begin to improve with her alertness. I'm sure she will be excited to sleep in her own bed and back to her normal routine.
It has now been 24 hours since Gabby's surgery and she is still worn out. Her doctor stated that we shouldn't be too concerned as she has been through a lot. We are hoping that when she gets home and back in her familiar environment that things will begin to improve with her alertness. I'm sure she will be excited to sleep in her own bed and back to her normal routine.
Monday, October 18, 2010
Surgery Number Two!
The long awaited anticipation is finally over, Gabby was able to get her shunt surgery today. For those who follow me on facebook, you are aware of the many challenges Gabby had to face in order to get her shunt. We have been trying for two months to get her shunt but she had infection after infection after infection. These infections (Urinary Tract Infection) is basically what led us to our long hospital stay. I must admit that this long hospital stay has been very productive. We had many specialist see Gabby and we were able to get to the bottom of many things such as her infections.
In previous post, I mentioned that Gabby has Kidney Reflux stage 1 (very minor), but these contribute to her infections and can lead to more serious things like Kidney damage and function loss. Her daily dose of Bactrim will help prevent further infections.
As for Gabby's surgery, the main reason for this post, it went very well. Overall, the surgery lasted about an hour. The doctor stated that she had lots of pressure and he removed some of the fluid. She was taken back to the PACU (Post Anesthesia Care Unit) where she remained for another hour. She was closely monitored until her vitals were good enough for her to return to her room. Right now, she is resting comfortably in her hospital bed. We shall remain in the hospital for a few more days to monitor her. We will be so grateful for her to come home, and I will be grateful to be back home with my loving family.
In previous post, I mentioned that Gabby has Kidney Reflux stage 1 (very minor), but these contribute to her infections and can lead to more serious things like Kidney damage and function loss. Her daily dose of Bactrim will help prevent further infections.
As for Gabby's surgery, the main reason for this post, it went very well. Overall, the surgery lasted about an hour. The doctor stated that she had lots of pressure and he removed some of the fluid. She was taken back to the PACU (Post Anesthesia Care Unit) where she remained for another hour. She was closely monitored until her vitals were good enough for her to return to her room. Right now, she is resting comfortably in her hospital bed. We shall remain in the hospital for a few more days to monitor her. We will be so grateful for her to come home, and I will be grateful to be back home with my loving family.
Saturday, October 16, 2010
Consciousness in Children with Hydran
I remember when I was told my daughters diagnosis. We were taken to a separate room where the physcian told us in kind words that our daughter would be in a "vegetative state" and that she would never have any consciousness awareness. We took our daughter home expecting just that, we didn't know any different, we were not the medical professionals and who were we to doubt them. Jason and I knew that even if she did live a "vegetative state" that she was still our daughter and we would give her the love that she deserved. It wasn't long after our daughter came home that we knew she was far from living a so called "vegetative state". Our daughter would smile,respond to our voices, and even an occassional cry. As she got bigger, we began to see her personalilty. She's funny, anwry, and very lovable. She will laugh at silly voices or babies crying, she will smile when she hears familiar voices, she will play with toys, she cries when she is upset, hungry, or not feeling well. My daughter, along with many other children with her condition, live a life full of love and are consciously aware of their surroundings. We allow them to live life as if they do not have a disability. We never set limitations on our children and we allow them to show us what they are able to do. For all those parents who have a child living with a disability, never set limitations for your child. They will do what you allow them to do. If you set limitations on your child, then who knows what oppurtunities they will miss out on.
You've developed the strength of a draft horse while holding onto the delicacy of a daffodil ... you are the mother, advocate and protector of a child with a disability." -Lori Borgman
You've developed the strength of a draft horse while holding onto the delicacy of a daffodil ... you are the mother, advocate and protector of a child with a disability." -Lori Borgman
A New Hope
Hello Followers,
Well, I must admit that my last post was quite negative and for that I apologize. I can't even begin to tell you how much I have appreciated the great care that Gabby is getting while in this hospital. She is in one of the best hospitals in the world and I am so grateful. I will admit that my emotions do get the best of me at times when it comes to my daughter. I don't handle negativity too well and I sure don't handle people asking me how much I understand about my daugther's condition and her prognosis. I live everyday knowing quite well what my daughter's prognosis is. Everyday we live the reality that our daughter might not be here tomorrow and there is nothing worse then someone constantly putting in our face. We try our best to live day by day. I realize doctors have to distance themselves from patients and families, but I wish some would just have a little bit more empathy and compassion when talking about things.
I must admit that the Physcian I was quite upset with in my last post has done a complete 360. I don't know what caused the change, but he has been completely interested in learning about Gabby and her diagnosis. He is now educating his students about her condition and has even began researching info on his own. I feel as if I own him an apology in a way because he is unfamiliar with her diagnosis. Again, I just wish doctors can be more compassionate in the way they word things sometimes, and that is not directed towards medical professionals only, but to all society in general.
I have a new hope (hince the post title) that my daughter along with every other Hydran child will change the reality of this diagnosis. I hope that research will be done and there will be more education in regards to this condition. Hydranencephaly is not going away. More children are living longer with this condition and I will never quit advocating for the need of more education and research.
This post is dedicated to all those families who have a loved one with Hydranencephaly and to the wonderful staff at CCHMC, thank you for taking excellent care of my Gabby.
Well, I must admit that my last post was quite negative and for that I apologize. I can't even begin to tell you how much I have appreciated the great care that Gabby is getting while in this hospital. She is in one of the best hospitals in the world and I am so grateful. I will admit that my emotions do get the best of me at times when it comes to my daughter. I don't handle negativity too well and I sure don't handle people asking me how much I understand about my daugther's condition and her prognosis. I live everyday knowing quite well what my daughter's prognosis is. Everyday we live the reality that our daughter might not be here tomorrow and there is nothing worse then someone constantly putting in our face. We try our best to live day by day. I realize doctors have to distance themselves from patients and families, but I wish some would just have a little bit more empathy and compassion when talking about things.
I must admit that the Physcian I was quite upset with in my last post has done a complete 360. I don't know what caused the change, but he has been completely interested in learning about Gabby and her diagnosis. He is now educating his students about her condition and has even began researching info on his own. I feel as if I own him an apology in a way because he is unfamiliar with her diagnosis. Again, I just wish doctors can be more compassionate in the way they word things sometimes, and that is not directed towards medical professionals only, but to all society in general.
I have a new hope (hince the post title) that my daughter along with every other Hydran child will change the reality of this diagnosis. I hope that research will be done and there will be more education in regards to this condition. Hydranencephaly is not going away. More children are living longer with this condition and I will never quit advocating for the need of more education and research.
This post is dedicated to all those families who have a loved one with Hydranencephaly and to the wonderful staff at CCHMC, thank you for taking excellent care of my Gabby.
Wednesday, October 13, 2010
CCHMC Day 23, October 13, 2010
It is now day 23 in the hospital and I must say it has been a true experience. Gabby has been introduced to many new physcians. I met a doctor yesterday and I must say it is really scary that he is responsible for teaching our future doctors of the world. He came and met Gabby yesterday and was interested in her story as to what brought her to the hospital. Well to make a long story short, I filled him in on her spasms and how she had a 104 temp and was rushed to the ER and was treated for all kinds of things including seizures. He made a comment in regards to children needing to have a brain to have a seizure. Aproximately 75% of children with Hydranencephaly do in fact have seizures. They are more difficult to diagnose then cortical seizures due to the fact that EEG's aim more towards reading the cortex of the brain. In a child like Gabby, seizures occur in the brainstem and are usually more difficult to treat than cortical seizures. Its amazing, I really don't mind the fact that doctors don't understand much about Gabby's condition. What I do mind is when they make inconsiderate remarks about a disrorder they know nothing about. I wish doctors would just be more open to listening to the parents when it comes to their child. Learn by observing the child, don't always rely on those textbooks. Anyways, enough of the venting.
Now on with Gabby. She continues to have 20 cc's of fluid taken off every 24 hours and she responds well afterwards. As of right now, it looks as if all infections are clear. They have been adjusting her meds and her formula to better meet her needs. She continues to refuse to eat by mouth so we have to put her feeds in her tube. I have been doing most of the feedings. I try to offer her the bottle by mouth, but she is just not interested. We are hoping that this is temporary and that she will decide to take the bottle once she gets home. I do know that upon discharge they will release her home with a feed tube in place. The feed tube that is being used is the same type when she was newborn. It is called an N-G tube and is placed in your nose and goes down your throat into your stomach. These are not surgically placed as the feed tubes that go directly into the stomach.
Gabby has been more alert the past two days and I believe it has to do with the fluid being removed and her getting two good days of nutrition. We are looking forward to her getting her shunt and hope for her to be home soon.
Love to all and thanks for continuing to pray and support our little miss Gabby
Now on with Gabby. She continues to have 20 cc's of fluid taken off every 24 hours and she responds well afterwards. As of right now, it looks as if all infections are clear. They have been adjusting her meds and her formula to better meet her needs. She continues to refuse to eat by mouth so we have to put her feeds in her tube. I have been doing most of the feedings. I try to offer her the bottle by mouth, but she is just not interested. We are hoping that this is temporary and that she will decide to take the bottle once she gets home. I do know that upon discharge they will release her home with a feed tube in place. The feed tube that is being used is the same type when she was newborn. It is called an N-G tube and is placed in your nose and goes down your throat into your stomach. These are not surgically placed as the feed tubes that go directly into the stomach.
Gabby has been more alert the past two days and I believe it has to do with the fluid being removed and her getting two good days of nutrition. We are looking forward to her getting her shunt and hope for her to be home soon.
Love to all and thanks for continuing to pray and support our little miss Gabby
Tuesday, October 12, 2010
Saturday, October 9, 2010
CCHMC Hospital Stay
Well today is day 19 of me being in the hospital. I am really glad that they are taking such good care of me, but boy am I ready for my shunt surgery and ready to go home. Since I have been here they have done many test on me. I have had a cat scan wich has showed only minor differences from my first one. The most rescen one showed that I had a tear in my cotortum. This is the lining in the skull that is between the skull and brain. Having a tear there is very normal for children with my condition or also, Hydrocephalus (water on the brain). There is no treatment for it, but it shouldn't get any worse when I get my shunt. While I was here, they also had me see an Endocrinologist. The Endocrinologist ran all sorts of test on me to see what hormones I was lacking. Amazingly enough I wasn't lacking any of them. Also, I saw a Urologist here and I was diagnosed with having Kidney reflux (stage 1). Stage 1 is just a minor case and luckily it doesn't require any surgery. The Urologist placed me on a daily med called Bactrim and this will help prevent me from getting Urinary Tract Infections. At this point, I am not sure when I will be getting discharged. I am hoping that they will be able to do my surgery on Monday and I will be able to go hom on Tuesday or Wednesday. It has been a long few weeks and I cant wait to go home and sleep in my own bed.
Friday, October 1, 2010
My Very First Surgery
Hi Everyone,
It has been an eventful couple of weeks. On September 20, 2010 I was admitted to Cincinnati Children's Hospital. I was admitted to the hospital so I could get some IV antibiotics to clear me of a UTI infection I had. I needed to be free of my infection so I could get my shunt surgery to help relieve some of the extra fluid on my head. Well after five long days in the hospital they allowed me to go home. I was able to go home because they had put a picc line in that allows me to get my antibiotics at home. So on Friday September, 25, 2010 I was able to go back home with my family. things went well until 4 am on Saturday. I woke up mommy because she heard me having severe spasms in my bed. She got up like she usually does and gave me my Valium. Usually, my Valium works, but not this time. Mommy and Daddy got really scared because I also had a fever. Mommy called 911 and they were there within seconds. They had to give me Versed in the ambulance because they thought I was seizing and couldn't stop. By the time I got to the hospital I had a temp of 104, my heart was beating way to fast and I was in shock. They had to take me to the trauma unit where there were so many medical doctors working on me. I was scared and I know mommy and daddy was too. They got me in stable condtion and I was taken to a room in the ER where they would keep me until I was admitted. Those silly doctors in the ER put an IV in my head and it popped and my skin started filling up with saline. Daddy looked at me and he saw that my whole face was swollen. I looked so funny for almost two days until the swelling went down.
Well after I got admitted they ran all sorts of test on me. They thought that I had Meningitis, Encephalitis, or Sepsis because my white blood cell count was 35 and my high fever. By the next day I was doing much better. They weren't sure what was wrong with me but they said that if it was the three things that they suspected that I would not get better that quickly. The doctors just think that my body does strange things when I am under stress or not feeling too well.
It is now October 1, 2010 and I am still in the hospital. Today, I went in for my shunt surgery but when they had me back in OR they noticed I had a yeast infection on my neck. The doctor was too afraid to do the surgery do to risk of infection. Instead, he placed a resevoir inside my head so he can go in and drain fluid as necessary. He was able to take 20 cc's of fluid off and boy was that a relief. I am hoping to be back home with fmy family by Monday October 3, 2010. Thanks to all my family and friends who always pray for me. I love you all.
Gabby
It has been an eventful couple of weeks. On September 20, 2010 I was admitted to Cincinnati Children's Hospital. I was admitted to the hospital so I could get some IV antibiotics to clear me of a UTI infection I had. I needed to be free of my infection so I could get my shunt surgery to help relieve some of the extra fluid on my head. Well after five long days in the hospital they allowed me to go home. I was able to go home because they had put a picc line in that allows me to get my antibiotics at home. So on Friday September, 25, 2010 I was able to go back home with my family. things went well until 4 am on Saturday. I woke up mommy because she heard me having severe spasms in my bed. She got up like she usually does and gave me my Valium. Usually, my Valium works, but not this time. Mommy and Daddy got really scared because I also had a fever. Mommy called 911 and they were there within seconds. They had to give me Versed in the ambulance because they thought I was seizing and couldn't stop. By the time I got to the hospital I had a temp of 104, my heart was beating way to fast and I was in shock. They had to take me to the trauma unit where there were so many medical doctors working on me. I was scared and I know mommy and daddy was too. They got me in stable condtion and I was taken to a room in the ER where they would keep me until I was admitted. Those silly doctors in the ER put an IV in my head and it popped and my skin started filling up with saline. Daddy looked at me and he saw that my whole face was swollen. I looked so funny for almost two days until the swelling went down.
Well after I got admitted they ran all sorts of test on me. They thought that I had Meningitis, Encephalitis, or Sepsis because my white blood cell count was 35 and my high fever. By the next day I was doing much better. They weren't sure what was wrong with me but they said that if it was the three things that they suspected that I would not get better that quickly. The doctors just think that my body does strange things when I am under stress or not feeling too well.
It is now October 1, 2010 and I am still in the hospital. Today, I went in for my shunt surgery but when they had me back in OR they noticed I had a yeast infection on my neck. The doctor was too afraid to do the surgery do to risk of infection. Instead, he placed a resevoir inside my head so he can go in and drain fluid as necessary. He was able to take 20 cc's of fluid off and boy was that a relief. I am hoping to be back home with fmy family by Monday October 3, 2010. Thanks to all my family and friends who always pray for me. I love you all.
Gabby
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