Seven years ago today, our journey of raising a child with special needs began. It was a life changing day. During a follow-up ultrasound, I was told that our baby girl’s eyes had not developed. The best case scenario I was given was that she would be blind and the worse case scenario was that she wouldn’t live. There were so many questions but few answers. Despite all the pain and struggles, everyday with Faith has truly been a gift. Faith continues to teach us so much about life. Her strength and resilience is admirable. Her sweet personality and sense of humor brings happiness to many. Her smiles and giggles are contagious. As she is in the midst of another rough agitation cycle, we hope and pray for this to break soon. Our strength comes from knowing that God has a plan and purpose for Faith’s life and He is working in us and through us even on the toughest of days. Thank you for the continuous love, support, and prayers for Faith and our family!
As 2015 comes to an end, I wanted to find a few minutes to summarize Faith’s past year. As I type today, I can find peace in how she is doing right now and hope in what 2016 will bring. I would say that 2015 was Faith’s toughest year yet. The heartbreaking three months that she spent in the hospital this past spring/summer were filled with no real answers, not much direction, and many fears. Faith suffered so much and her quality of life was a big question mark. Since then, she still struggles with the neurological stuff but for the most part we have been able to manage it at home. She had a few short hospital admissions this fall with respiratory viruses but thankfully she bounced back well. Faith’s strength and resilience is amazing.
Faith started kindergarten in August! She seems to love school and is thriving! Her school is awesome and very equip to meet her needs. She is challenged daily to learn and explore new things. Mama can’t compete with the fifteen people(teachers, therapists, etc.) that work with her throughout the course of her school week! I love how engaging and stimulating school is for her. She is so loved and is such a joy to everyone at school! Faith has a one-on-one nurse with her at school to handle the medical part of her care and that helps ensure that she can be at school unless she is sick of course. She does come home after school pretty tired! Unfortunately, her nights are still unpredictable and sleep is often still an issue. Some nights/weeks/months are better than others.
Faith’s smile continues to be the highlight of each day. She is also using her smile to communicate that she means “yes” or wants more of something. Her frown or refusal to smile means “no” or that she is done with an activity. At home and school, she is being more consistent with her communication.
This past summer we moved into a more accessible home that is working much better for Faith’s mobility and physical needs. Faith and our family were blessed this Christmas by the generosity and kindness of others to help our family buy a wheelchair accessible van to transport Faith and her new very heavy wheelchair! It is helping so much already and truly makes a difference on a daily basis. Faith can now stay in her wheelchair which helps avoid extra lifting and just makes going places a much smoother process in general. She is much more comfortable and my back is thankful as well!
It was so nice to wake up on Christmas morning at home this year! Faith has spent the last couple of years in the hospital on Christmas so good health this time of year is not taken for granite.
Thank you all for your love, prayers, and support all year long. Life is not without struggles, but I continue to trust in God’s plan and purpose for Faith. Wishing everyone a healthy and happy 2016!
FYI- I started to write this post quite awhile ago and just haven’t had the time or energy to complete it so finally I am making the time. Let’s start off with a happy Faith pic! So beautiful!
After nearly three months in the hospital, Faith is back home! She has been home for over a month now and so far we have been able to manage her care at home and plan to do our best to keep it that way. There were moments during this past hospitalization in which we weren’t sure if Faith would ever return home and even if she did we had many concerns about her quality of life. We are beyond grateful that the horrible episodes of agitation Faith was experiencing have gotten better. The episodes were absolutely heartbreaking and we felt nothing but helpless as she suffered. I’m not sure that we will ever truly recover emotionally from this experience as I think we will always be on edge knowing that there is great potential for things to get bad again. We know that Faith will likely continue to have disease progression and that she could have triggers again in the future that could cause more neurological problems. For now, we are just going to enjoy her being home and all being together as a family again.
We feel that Faith’s quality of life is better at home and since she no longer requires intensive care we are going to do our best to continue to manage her care at home. We have an extensive plan of action along with a rescue medication plan if Faith has issues at home. Faith is heavily medicated yet still having challenging dystonia, chorea, and agitation. She also continues to struggle to fall asleep despite her sleep medications that helped her in the past. We know that Faith is showing many signs of disease progression and that she continues to have many struggles. Her oxygen requirement has increased and she needs oxygen regularly now when she is sleeping. We also have concerns with her having longer and more frequent pauses in her breathing so we will be doing home apnea monitoring. Even though no test can tell us what changed or triggered all of this, we do know Faith’s brain has changed in many ways. Despite the challenges and struggles, everyday is a gift and every smile and happy moment from Faith is sunshine in our day. We are continuing to keep her involved in activities as much as possible. She was able to participate in Variety camp this summer in a part-time capacity. She loved pool and music time as always! If all goes well, she will be starting kindergarten in August! She will need a great deal of support in her school environment but we are confident that we will have a good plan in place for it to be a positive experience.
Twelve weeks in the hospital tore our family apart so we are trying to get back on track as we adjust to Faith’s new medication schedule, treatments, and new baseline. We thank God for giving Faith more life to live and the ability to keep brightening the lives of others that get the privilege of knowing and loving her. She is an amazing little girl who continues to help us learn and grow in so many ways! Thanks for all the love, support, and prayers for Faith and our family!
Keeping the faith always,
Since I just can’t seem to find the time or energy to do many blog posts, I figured I would do an end of year post summarizing Faith’s year.
Faith started out 2014 in the hospital trying to recover from rhinovirus and RSV. These hit her hard and took months to recover. It didn’t help that she got hit with several other viruses as she was trying to recover. She caught a break for a few months late spring until mid-summer when she caught a couple more viruses and dealt with pneumonia. She has already had several viruses this fall/early winter. Three viruses in the month of December alone. One thing we know for sure is that Faith struggles to stay healthy. Last spring, she was diagnosed with selective IgA deficiency. This basically means she doesn’t have a first line of defense against viruses, bacteria, etc.
Due to the complexity of everything going on with Faith including her immune and neurological system concerns, we decided to pursue a whole genome sequence to determine if there was something else going on in addition to her SOX2 gene mutation. We wanted to determine if we could find out anymore information that would help us treat or manage her care. Just recently we got the results and were told a mitochondrial DNA variant was found.
Right now, we don’t know exactly what this means. The variant has not been seen before. It also is not seen in healthy people. These results could mean that Faith has mitochondrial disease. We just don’t know yet. Since the mitochondrial DNA comes from the mother, I will be going in for testing soon. The genetics team is hoping that my results will give them more information to better interpret this variant. Then, they can determine what this variant means and how they think it is affecting or will affect Faith. At this time, we are not clear if or how this could impact the rest of our family.
Faith continues to enjoy school. Testing is being done to determine her school age educational diagnosis. We will have a very important meeting this spring to determine where Faith will go to school for Kindergarten. Faith continues to stay busy with various therapies outside of school as well. She loves her aqua therapy and music class. She also enjoys therapeutic horseback riding but currently has a few months off for the winter.
Faith is a happy girl with lots of smiles and laughs to share! She loves interaction with others and one-on-one time to help her learn and explore her environment. She continues to be such a joy to everyone that gets to know her!
Faith is getting to the point where she is outgrowing her equipment or it is just time to get new equipment based on her changing needs. So we have been working on several things…
After many wheelchair trials and trips to the wheelchair clinic, we have finally decided to go with a custom-molded seat in a Zippie base. We are just beginning the insurance approval process and in general the custom-molded seat process is much longer so it will be awhile before Faith actually gets her new chair. A big WOOHOO, that we have gotten to this point!!
Faith is still in a converted crib/toddler bed. Before we know it, she is going to outgrow it length wise. We are beginning to have more safety concerns with her movement issues and her growing body. Lifting her in and out of bed is getting more challenging as well. We are trying to get her a SleepSafe bed. It would better meet her needs long-term and may also help with some of the wear and tear on our backs lifting her in and out of bed.
We are still searching for a more accessible home that will better meet the needs of our family. It is a challenging process but we are trusting God’s timing and plan.
Thanks for keeping up with Faith’s progress! Again, if you would like more frequent updates on Faith’s progress please follow her on twitter (Super Baby Faith) or like the Super Baby Faith page on facebook.
Wishing you a happy and healthy 2015!
Keeping the faith,
Good thing for the SBF facebook page and twitter updates, because any other updates to the website have been pretty minimal recently. I’m a busy mom, what else can I say! I will try to give a quick summary of the past few months since my last post. As you probably read from my last post, Faith had a rough winter. Faith had a great three months from her last hospitalization at the beginning of April until mid July when she was hospitalized for pneumonia. Then, at the beginning of August she was hit with rhinovirus and treated yet again for pneumonia. Thankfully, these hospitalizations weren’t too lengthy and we were able to manage her care at home as she recovered. Faith started back to school on August 25th for her last year of preschool. She is currently in a self-contained classroom for children with physical impairments. This year will involve testing to determine her school-age educational diagnosis and the big decision of where Faith will go for kindergarten. We are hoping for a healthy and happy last year of preschool! So far, so good!
Faith has made progress with her conformers and just had another new set made this month. She has grown quite a bit this past year in general so that may be helping with the eye sockets as well. She was also recently fitted for a new pair of AFOs (ankle and foot orthotics). This new pair will be more flexible and dynamic. Hopefully, this will help us get her standing for weight-bearing purposes. We have not had much success with other types of AFOs due to her movement and tone. We are still in the process of finding the right wheelchair for Faith. She is outgrowing her current chair and is very uncomfortable in it. It does not work well for Faith as she is constantly moving and struggling with her tone. We are still awaiting results of Faith’s whole genome sequence which will hopefully give us more clarification or additional information to help with Faith’s treatment and care. Faith has her fussy moments but continues to smile and laugh and seems to be enjoying life! She still loves music and water and overall is a happy little girl! Faith has a big birthday coming up soon! She will be 5 before we know it!
For more frequent progress updates about Faith, please like her facebook page Super Baby Faith or follow Super Baby Faith on twitter.
Keeping the faith,
Virgil said, “The greatest wealth is health.” As a health teacher, I always had several quotes hanging on the walls of my classroom and this was one of them. It always stood out as a simple yet powerful quote about how invaluable good health is. Since then it has spoken even more truth as we have faced so many challenges especially this past winter with Faith’s health. I feel like we are in “the calm after the storm” right now. It is truly amazing to see Faith so happy and healthy! We haven’t been back to the hospital due to illness for over 2 months!!! It is nice to know we are just going there for a scheduled appointment and get to return home. Faith’s had several routine specialist appointments over the past month and all the doctors have said how good she looks. Faith is even growing better! She has gained weight and grown length-wise as well. She is 34 lbs. now and approx. 39.5 inches long! Yes, I can feel the difference! Her endocrinologist feels that the switch to “real” blended food is giving her much better nutrition. My biggest regret is that I didn’t make the switch sooner. Most importantly, we are just so thankful that Faith is doing so well right now and that her summer is off to a good start!
We don’t slow down much in the summer. Faith is doing a 4-week summer school program and we are continuing to do all the other therapies that she does outside of school. Horse, music, water therapies as well as regular OT and PT. These therapies are even more important in the summer since she has eight weeks of out school. We also have plenty of other appointments scheduled including specialist appointments and another wheelchair evaluation. We are really hoping that we can make some progress on determining what direction we should go with the type of wheelchair that would be best for Faith. She is not comfortable in her current kidkart and is often hurting herself due to her tone and chorea. Her growth is also affecting her fit in the chair. Eventually, she will get to the point that she is going to outgrow the chair completely so we want to figure out what chair is going to be the best option for her.
As Faith continues to grow, transferring and lifting is getting more challenging. We were so fortunate to get funding to get a portable ramp out our front door. This has been especially helpful for getting her on and off the bus. However, it still requires lifting her and the chair quite a bit since we do not have a ramp to get her and the chair in and out of the van. This is not too big of an issue yet because her current wheelchair (kidkart) isn’t very heavy. However, we know that chairs that we are going to need to consider are going to be much heavier. So that will be something to figure out once we determine what chair will work best for Faith.
Our bigger concern right now is the limited accessibility of our current house. The doors aren’t even standard size and the hallway is very narrow. We rent this house so it is not an option to do any modifications to make it more accessible. Even if we owned it, the expenses involved would probably not make modifications an option. Getting Faith in and out of her room requires twisting and turning sideways and getting her in and out of the bathroom brings the same challenge. Baths are just getting more challenging in general because Faith has outgrown her bath chair and the bath tub is not big enough for a larger bath chair. 34 lbs isn’t that heavy yet but due to Faith’s minimal trunk and head control it feels like a lot more!
We are hoping a BIG prayer will be answered and that we can sell our house in Texas this summer. This will hopefully put us in a situation to be able to start the search for a more accessible home. It would be wonderful to find a home that is more accessible and could get us by for quite awhile. A very open floor plan, wider doorways/hallways, a bigger bathroom with a walk-in shower or bigger bath tub and no big steps going in and out of the house would be great! Most likely at some point we will need to make modifications but the costs involved are just not something that we could even consider for quite sometime.
Thanks for all the continued prayers for Faith and for keeping up with her progress!
Keeping the faith,
Five years ago on April 14th, I returned to the doctor for a repeat ultrasound. The week before I had went in due to some issues I was having. The sonographer did the typical anatomy ultrasound and we found out we were having a girl! I was almost 19 weeks pregnant at the time. The doctor was not in that day(it was a Friday) and the sonographers mentioned something about the baby not being very cooperative and not being able to get everything they needed. So, I wasn’t necessary surprised when I got a call on Monday saying that I needed to come back in. I went in the next day by myself thinking that my baby girl just hadn’t cooperated the week before and the sonographers couldn’t see everything they needed to see. I figured it was no big deal. So I left work and headed to the doctor’s office.
Again, several sonographers looked at things and then the doctor came in. Within minutes, I was told that my baby girl’s eyes did not develop. I remember just trying to stay so strong and take it all in. I remember clearly asking what was the best case/worst case scenario. Mostly, I just remember hearing that they just really didn’t know if it was just her eyes or a whole lot more. The best case scenario I was given was that my baby girl would be blind. The worst case scenario was that she could have some type of chromosomal issue that could result in an extremely short life if she even lived at all. Bottom line, there just weren’t many answers or real explanation to what caused this to happen. After I took it all in or as much as I possibly could after being hit in the head with a huge brick(so it seemed), the sobbing began. I remember calling Mike and I couldn’t even talk. He couldn’t even understand me. He didn’t want me to drive but I had to a bit because we were far apart. We met in a parking lot and I told him I all knew. We just cried together for a long time.
So, I share this story because I remember thinking on that day that it is was the worst day of my life. It was a huge shock and obviously I went through a grieving process. Of course, we all have our ideas of what life is going to be like when we have children and then when you are faced with this type of situation you realize that life is going to be so different from what you ever imagined. We did a lot of waiting from April 14th until September 10th when Faith was born. Then, Faith spent her first month in the NICU where many more issues were detected. Today, we still don’t know it all but we have a better idea of her many needs and medical issues. A few days after we found out that our baby girl’s eyes did not develop, we decided to name her “Faith.” We knew that our faith in God would help us through the struggles and challenges and the name just seemed so fitting to the situation. Now, when I look back at April 14, 2009, instead of thinking of it as one of the worst days of my life I think of it as a life-changing day. Don’t get me wrong, it was probably the saddest and toughest day of my life so far. No parent wants to hear that their child is going to have struggles and daily challenges. However, it was the beginning of our new life raising a child with special needs. For the remainder of the pregnancy, we had to get educated, prepared, and get resources lined up in addition to the typical preparation for a new baby.
Before Faith was born, I had no idea of what it really takes to raise a child with special needs. Being a mom in general is the most amazing and challenging role I will most likely have in my life. Being a mom of a child with special needs brings additional challenges but also a great appreciation for many things. I am a work in progress. When it comes to being a mom, there are a few things that I’m pretty good at but there are many areas that I could use a lot of improvement in. I have good days, bad days, good moments and bad moments. I’m pretty sure most moms do! I try to keep things positive but I also keep it real. Sometimes I just wish that I could take Faith in the car and head to an appointment and not listen to her scream bloody murder because her tone and extension are so bad. Sometimes I wish it didn’t take so long to pack up everything Faith requires to go somewhere and that it was just easier in general to go places with her. Sometimes I wish I could go to the grocery store with both my children and get a full cart of groceries. Sometimes I wish people would just “get” my life. Many days I just wonder-why can’t just one thing be easy today? I also wonder about the what if’s…
I try to not let these things take over my mind but sometimes I can’t help but wonder how different life would be if Faith was a healthy and typical developing 4.5 year old. I don’t think it makes me a bad mom or less accepting of my daughter. I feel I am human. Faith is worth every struggle and frustrating moment. The hardest part is always seeing her struggle and often times feeling pretty helpless.
One of the biggest challenges for me is just focusing on being Faith’s mom. Balancing all the hats(nurse, therapist, personal assistant, appointment scheduler, advocate, researcher, etc.) I wear can be overwhelming and draining. Sometimes I just want to be Faith’s mom. I strive to keep improving in this area but sometimes it seems quite impossible.
I believe the experiences I have had the past five years have helped me learn and grow in ways that wouldn’t have happened without the ups, downs, scares, and joys. I believe God never wastes a hurt and I have seen how Faith has touched the lives of so many people. At the same time, we have met so many amazing people that have touched our lives because of Faith. We are so grateful to all of Faith’s therapists, teachers, doctors, nurses, and so many staff members from many programs Faith is a part of who have gone out of their way to guide and support Faith and our family. We are grateful to the many people who have never even met Faith that pray for her and send love and encouragement to our family. We are truly grateful to our friends and family that support and help us. It truly does take a village.
Why does Faith have to struggle? What do we have to think about things and make decisions no parents should ever have to make? I don’t have the answers to these questions or many other questions that I often ask God myself. I probably won’t ever be able to answer these in this lifetime but I do believe that God has a special plan and purpose for Faith’s life. Mike and I are doing our best to seek out that purpose on a day to day basis and in all our decisions.
Faith has given me a different perspective on life. What is important and what really matters in life has changed for me. What Faith needs most each and everyday is our love. No matter what Faith can or cannot do or how hard life gets I want Faith to always feel how much she is loved. Life with our special little girl is our reality and know matter how draining things can be we will continue to pursue what is best for her and strive to give her the best life possible. As the parent of a child with special needs, I don’t take much for granite. We celebrate even the smallest signs of progress!
I have so much respect for other parents that have older children that are ahead of us in this process. For those parents who now have adult children with special needs, you all are incredible. What an accomplishment! I also think about the parents that have lost children in the process. It breaks my heart for these parents who have gone through so much and then have to say good-bye. Words can’t say how my heart aches for these families that have lost children. What I can say about so many of the parents of children with special needs that I have encountered is that they are incredible advocates for their children. I aspire to be the best advocate for Faith that I possibly can be and I am so fortunate to have such great resources to learn from. I am so thankful for my friends that have children with special needs that are always there to listen and be great resources. There is much comfort in knowing that someone else “gets” my life and can support me through the good and bad times.
Five years ago, I had no idea what life would be like today. I am so thankful for all that Faith is and all that she has overcome. I thank God for her everyday and am so fortunate to have her in my life. Everyday is a gift.
Faith makes things possible, not easy!
Keeping the faith,
It has been a rough winter for Faith. Pneumonia, RSV, rhinovirus, coronavirus, and other undetected viruses have sure taken their toll on Miss Faith. We have spent a lot of time in the hospital the past few months. We are truly ready for spring with the hope that it will bring good health for our super girl! We pursued some bloodwork to look at Faith’s immunoglobulin(antibody) levels. There are several different types of immunoglobulins. Faith’s bloodwork results indicated that her immunoglobulin A levels were undetectable. Faith is considered to have selective IgA deficiency based on these results. This is most likely contributing to Faith’s frequent illnesses. We have an appointment with an immunologist next week in which she will most likely get an official diagnosis. She has been on a prophylactic antibiotic and may need to be long-term. We are very anxious for the immunology appointment as we have many questions.
Faith’s neurological issues are complicating things when she is sick. The past few months she has presented several times as if she is in septic shock and has gone through a lot to rule out that she doesn’t have a serious blood infection. We are hoping that we can investigate some of these issues more so that when she is sick we can avoid unnecessary testing if it just the way Faith’s body responds due to her neurological issues. It is a tricky situation for sure.
Faith is not going to school indefinitely and is currently receiving homebound services. We are remaining hopeful that she will get to return to school but right now she needs time to allow her body to completely recover.
We have definitely had some scary moments the past few months and are very grateful that Faith always bounces back. We do have significant concerns of how frequent Faith has been sick and that it is seeming much more difficult for her to bounce back. We continue to search for answers and advocate for Faith the best we know how. Thank you all for your continued thoughts, prayers, and support! It means so much to us through the stressful times. Faith is a blessed girl to have so much love and support!
Keeping the faith,
Faith has been sick for almost 6 weeks now. She has been stuck at this same point for the most part since we brought her home from the hospital. We still cannot completely get her off oxygen. We get her off for a day or so and then have to put her back on. Last night, we had to put her back on more oxygen than she has been on in quite awhile. She started prednisolone (steroid) last Thursday. We are hoping it will help her move past this place that she seems to be stuck at. She has had some rough coughing episodes this weekend and they continue to be challenging for her to handle. Maybe the prednisolone is helping reduce the inflammation and breaking up some of the gunk in her lungs and resulting in more coughing? We can only hope that is the cause. She still sounds course and crackily when listened to. Her most recent chest x-ray did not look good but still appears to be a viral pattern and not a bacterial pneumonia. RSV is definitely taking its toll this time and it is a long and slow recovery process for little Miss Faith.
We continue to be grateful that we can manage Faith’s care at home but it is exhausting and very emotionally draining at times especially with all the ups and downs and so many unknowns. Just want to get Faith healthy and back into the swing of things!
“Faith makes thing possible, not easy.”
Thanks for the thoughts, prayers, and support!
Keeping the faith,