You can now keep up with Faith’s progress on facebook. For quick updates about Faith, please like Super Baby Faith on facebook.
I am happy to share some positive things that have been happening with Faith since my last post! Faith is still struggling with the chorea and her tone but we recently started her on a new medication called Onfi that is calming and slowing her down a bit and seems to be helping her be more comfortable. So far it is promising!
Faith is continuing to enjoy horse therapy! We are wrapping up the last few weeks of the session and then she will have a break over the winter months. Faith has definitely made progress since we first started last March. She is so happy on her pony, Merrywood and the movement is so calming to her.
Faith is doing really well with lifting up her head for longer periods of time. So exciting to watch her do this!
Faith’s trunk is getting stronger and she is doing better in a sitting position. She still needs a lot of support but every little bit of progress is exciting! Here is a pic of Faith working on sitting at school:
Faith has been vocalizing much more lately. It is so great to hear her communicating! We have gone through periods of time where Faith has done this but it has been awhile since she has been doing it this much. Lately, it has been quite impressive and frequent. Hoping to hear lots more! Hear Faith for yourself below! Click the link then click it again.
We are so thankful that we recently got funding approved to get a wheelchair ramp at our house for Faith. It was just put up this week and has already been very helpful. It is a huge help getting Faith on and off the bus and will make transporting Faith much safer for all of us.
We have recently made some changes in Faith’s daily diet. Faith has been getting 100% of her nutrition through her g-tube for the most part since she was about 3 months old. It has always been a challenge for Faith to tolerate her feedings and maintain weight so our options have been pretty limited. I did my research on blended food diets and talked with others who have children on blended food diets. I finally felt that we were at the point that trying something new was worth a try as long as we took things very slow and payed close attention to the nutrition composition of the food and total calories that Faith needs. I love the idea of giving Faith higher quality food and cutting down on the amount of processed food she is getting with the formula. Already we have seem improvements with reflux and constipation which were both additional reasons we wanted to try blended food with Faith. We have a long road ahead to get Faith completely on a blended diet but I am so glad we are experimenting with this and making progress. Right now, Faith gets three bolus feeds during the day of blended food which consist of grains, fruits, veggies, protein sources such as beans or meat, and then a type of fat or oil such as avocado, coconut or oil olive. So far, so good! Faith is tolerating the blended food great! No reflux and her bowels are moving very well as an added bonus! She refluxes mostly just with formula and sometimes water flushes. The thickness of the blended food seems to be helpful. I am very excited about improving the quality of the food Faith is getting and so thankful that she is tolerating it so well! We are continuing to keep a close watch on her weight and have to carefully plan, measure, and calculate her blended “meals.” Faith is still on a continuous overnight feeding that consists of formula. We are slowly decreasing the amount of formula she gets overnight as we increase the amount of blended food she is getting during the day. We are hopeful that at some point she can be on a complete blended diet. Baby steps for now!
Faith had a swallow study a few weeks back that was pretty consistent with her last swallow study that was done about 2 years ago. The results indicated that Faith still struggles greatly with swallowing and the possibility of Faith ever being able to eat by mouth for nutrition isn’t very promising at all. The muscles involved in swallowing are very weak. No matter how many times I hear this, it is still hard to hear. I remind myself that Faith can still be happy and healthy without eating on her own and I try to keep focused on just that. I feel that even if Faith is not able to eat on her own right now, I can give her the best nutrition possible with a blended diet. It makes me feel a little better too that I am doing something to help her! 🙂 The odds aren’t in Faith’s favor to do many things but I am trusting in God’s plan for Faith’s life whatever that may be and keeping the faith along this journey. I am trying to focus on all the great things Faith is doing and am so thankful for her progress. Whether or not Faith ever walks, talks, or eats on her own, she will always be my incredible daughter that has blessed my life more than I ever could have imagined!
Wishing everyone a very happy and healthy holiday season!
Keeping the faith,
Faith is doing much better since my last post. She appears to be much happier and comfortable. The biggest issue we are having right now is her feedings. We have been able to increase her rate for her tube feedings but it is a very slow process in order for her to tolerate the increases. The past few weeks we have struggled with getting in all the calories she should be getting in a 24 hour period due to the slow rate in which we have to feed her. Also, we have had more issues with reflux and vomiting. Thankfully, the past few days we have been able to get all of her calories in. Faith recently went to the doctor for her 4 year check up. Her weight was down and was concerning to her pediatrician. We feel that it is mainly due to her recent hospitalization, several days without eating, several more days without getting all the calories she needs, and reflux/vomiting. There is also concern that her constant movement is making it much more difficult for her to maintain her weight. Her GI doctor feels that if Faith continues to struggle with feedings that we need to move forward and get a GJ tube placed. We are trying to exhaust all other options first and are trying to avoid a GJ tube. We are not convinced that it would resolve her reflux. Additionally, she would be hooked up for feedings constantly which would be very difficult with the busy life Faith has with therapy, school, appointments, etc. Her constant movement would also make it very challenging. This switch would probably have us spending much more time in the hospital as well since it would require interventional radiology to put it back in if it would come out. We always make our decisions based on what is best for Faith’s health and comfort but we just can’t justify making the switch right now. We are hoping that Faith just needs a little more time to get back to tolerating her feedings better.
We were very happy to all get out of the house last weekend on a beautiful fall morning and head to the pumpkin farm! Faith and I decorated a pumpkin and played in the corn while Graeme and daddy ran around checking everything out. Graeme loved the animals and train. Here are a few pics:
Keeping the faith,
Wow! What a whirlwind it has been since my last post. Faith had an appointment last Tuesday with her GI doctor. The doctor was very concerned with Faith’s extreme agitation during her appointment. She sent us to get an x-ray and ultrasound to rule out intussusception.
The x-ray and ultrasound looked fine so that was ruled out. Faith was still so agitated that I wanted to make sure we had ruled out all possible causes of agitation so I scheduled an appointment with her pediatrician last Wednesday.
On Wednesday morning, Faith went to the pediatrician. Ears, mouth, urine, etc. all were fine. Still no real explanation for the extreme agitation. We had Faith’s appointment with the movement disorder specialist Wednesday afternoon. The doctor was concerned about how agitated Faith was as well. We did lots of brainstorming and discussed possible medications that may help. We were still assuming that there was a neurological cause to Faith’s agitation. We had a plan to start her on a new sleep medication that evening. The doctor thought that maybe if we address the sleep issue first that Faith may be less agitated. Faith’s body really needed some rest after minimal sleep for the past 3 weeks. Before we headed home, we visited x-ray once again. The doctor wanted to rule out that Faith didn’t have some sort of fracture that could be causing pain so she ordered a skeletal study. The study looked fine besides a varus deformity with her right foot which should not be a cause of pain. Finally, we headed home.
Faith struggled greatly every time we had to get her in the car seat that day. It felt so miserable to see her so miserable. We could barely buckle her in. She just screamed and cried. It was awful! We just knew something was not right and had known this for quite awhile now.
When we got home, I took Faith out of her car seat. She felt like she was on fire! I immediately took her temperature and it was 103.5 degrees F. They checked her temperature earlier at the doctor today and it was around 99-100 degrees F. We didn’t think much of it because Faith was so worked up and agitated that we just thought her body temperature was elevated. Regardless, the high fever came on very quickly. We headed back to the hospital to the ER. Not long after being there, the doctors that were coming in had many concerns. They told us that we would not be going home any time soon.
While in the ER, an IV was put in and they started blood work. They put oxygen on Faith as she was struggling more with her breathing and started retracting. Her agitation levels just seemed to be getting worse. Before long, we were told that Faith was being sent up to the Pediatric Intensive Care Unit (PICU).
Faith was so agitated that she starting biting and clenching her mouth shut. Her mouth was covered in blood and there was nothing we could really do to get her to stop. Once we arrived in the PICU, the team of doctors, nurses, and respiratory therapists were ready for Faith and on her immediately. This is when things started getting really scary. Faith’s respiration rate was over 90. Her heart rate was over 200 bpm. She was hyperventilating. The critical care doctor came in with the same concerned face that almost everyone else had in the entire room. He started telling us the plan. They were going to sedate her and get her hooked up to the bipap machine immediately. They were preparing to intubate her if needed. The anesthesiologist was checking Faith out and asking us questions. Things were happening so fast and Faith was in very bad shape. I looked at the critical care doctor and asked him if she was going to be ok. He said, ” We will do everything we can.” Those words alone told me how serious and life-threatening things had gotten.
Thankfully, they were able to get Faith sedated and the bipap machine helped Faith to breath so she didn’t have to do all the work. Her exhausted body finally got a break. She did not have to be intubated.
Faith remained sedated all of Thursday and Friday. She was able to come off of the bipap machine on Thursday and did very well. Friday evening she was stable enough to leave the PICU and move to the neurology floor at the hospital. Faith was slowly showing signs of progress. The concerning issue was that when she was awake, she was still agitated. On Saturday, the sedation medication was stopped. She was given the sleep medication during the day instead when she started getting agitated. I was not a big fan of this but we addressed that concern so it wouldn’t be an ongoing issue. However, at that point Faith really did need the extra sleep and a chance for her body to rest and recover. By Saturday, we were able to get her tube feeding going again and she tolerated it very well. On Sunday, we increased the rate of her tube feeding and again she tolerated it well. She was able to come off of the pulse ox machine on Sunday but did have to go back on it overnight. By Sunday, we started seeing positive signs of our Faith returning. Faith was much less agitated and starting to smile more. She had a really good day on Sunday! Faith continued to do very well on Monday as well. We just loved seeing all of her smiles! We missed them so much! Faith just needed to continue to prove that she could tolerate the increased rate of her tube feeding and then she would be ready to go home.
Faith didn’t have the greatest night Monday night. We figured that she was most likely just getting back to her typical night behavior and that we probably increased the rate of her tube feedings a bit faster than we should have. Nevertheless, Faith was still very stable and ready to go home. We felt comfortable managing all the remaining concerns on an outpatient basis. We had a care conference with several of Faith’s doctors yesterday(Tuesday) morning and then she was discharged from the hospital in the afternoon afternoon.
Tuesday morning before she was discharged, Faith was more irritable than she had been the previous two days but again it didn’t seem too concerning. By the time we left the hospital, Faith became very agitated once again. I had to pull over on the way home the screaming was so bad. I called back to the hospital and talked with her neurologist. She recommended that we continue the plan to go home and to call her back today if she was still struggling. The rest of yesterday Faith struggled. Last night, she barely slept again despite being on a very potent sleep medication. She just cried and screamed and appeared to be in pain the majority of the night. I feel like this is all a bad dream. What happened to our happy little girl that just made a miraculous recovery and was doing so well?
The first big question that still remains is- what happened last week? None of the blood cultures showed any growth so bacterial infections were ruled out. The only virus that showed up on the nose swab was rhinovirus. Faith has had rhinovirus before and has never been affected to this extent. Also, she didn’t have any typical virus symptoms or specifically the cold symptoms that you would expect with the rhinovirus. We still don’t have any real answers to what happened and why things got as bad as they did.
My initial thoughts were that Faith was exhausted from the sleep deprivation and extreme agitation that was occurring for the 3-4 weeks prior to being exposed to the virus. The fever probably also added some additional stress to her body. Faith has cortisol deficiency which means her body doesn’t handle stress very well to begin with. We can also assume that Faith’s neurological issues played a role in this. The second big question now is- why was she doing do much better and now she is back to being extremely agitated again? The unknowns are the scariest part of all of this. Every day that passes just makes me more and more concerned for Faith. We have no real answers.
It was truly amazing the progress Faith made from when she was admitted to the PICU last Wednesday night up until Monday night. She displayed incredible strength and resilience. The outcome could have been devastating; we are so grateful to all be back home but now we wonder how long it will last. We are following up with Faith’s doctors once again and still trying to piece this puzzle together. We are hoping that we can manage her care at home but time will tell.
Thank you all for your support, love, prayers, and support during Faith’s hospitalization. Prayers were answered and a miracle did happen! Faith proves to be our little miracle once again!
I ask for your continued prayers for Faith to maintain her strength as she continues to struggle and for wisdom and knowledge for the doctors trying to figure out what is going on with Faith.
Keeping the faith,
As I mentioned in my last post, Faith has been struggling since we weaned her from the diazepam. She has been very restless and agitated. She is barely sleeping at night. She just cries and screams when she is going through these rough episodes of extreme involuntary movement(chorea) and increased muscle tone. Faith has rough times during the day but her nights are much worse. Nights have always been challenging for Faith in terms of sleep and her chorea being worse at night but she had been doing so much better while she was on the diazepam. Of course, besides the horrible coughing episodes and struggle to clear her throat! Darn, side effects! We are thinking that things are worse at night for Faith since she is hooked up overnight for a continuous tube feeding and her stomach muscles are tight along with the rest of the muscles in her body. Her pain seems to be the worst in the middle of the night/ early morning after her feeding has been going for awhile. We have tried stopping her feeding at night and sometimes she does get some relief but not always. The challenge is figuring out how to get all the nutrition she needs in a 24 hour period and still keep her comfortable especially since her rate of intake is already very slow. If we feed her more throughout the day then we risk her being uncomfortable for school and therapy. It is also unsafe for her to do some of her therapies while hooked up due to the risk of aspiration. We are trying to work out a plan to see if we can get Faith some relief and sleep. Unfortunately, it seems that until we can get her more relaxed she is going to struggle with feedings no matter what time of the day she gets them or how we spread them out due to her whole body being so stressed with the increased muscle tone and movement.
We are hoping that if we can get the muscle tone and chorea under control that her nights will improve. It is just heartbreaking to listen to my little girl cry and scream in pain and feel so helpless. I have not seen her struggle like this in quite awhile and it is very concerning because we don’t know what options we have or what it is going to take to get her feeling better. Faith’s situation is very unique so treatment options are commonly trial and error. What I do know is that things have got to change! Faith deserves to be comfortable and happy! We have an appointment this week with Faith’s movement specialist that manages her chorea. She plans on going in a different direction with Faith’s treatment and we will be discussing it at the appointment. We are not exactly sure what that means yet but we would appreciate prayers for wisdom, knowledge, and guidance for all of us involved in the decision-making process. Most importantly, we would appreciate prayers for comfort for Faith.
Thank you for your continued prayers and support for Faith and our family!
Keeping the faith,
As I type this post, I feel so grateful for so much! I thank God for every day with Faith; every smile, every cuddle, every response that indicates understanding. I get emotional as I type this because I know things could be so different. The outcome could have been so much worse many times. I remember wondering if Faith would ever leave the NICU. I remember the recurrent pneumonia and failure to thrive. I remember seeing my precious girl in such respiratory distress before she was taken by ambulance to the PICU at our children’s hospital. I was so scared and couldn’t even be with her as I was still in the hospital myself just after having Graeme. I thank God for Faith’s strength and resilience. I thank Him for watching over her and protecting her ALWAYS.
Yes, Faith’s developmental progress is slow! But, Faith is making progress!! Faith’s anticipation skills are getting better and better. She is responding more consistently to things she likes and dislikes. She is tolerating tummy time better than ever and continuing to work very hard on her head control. Faith smiles and giggles and has her own little sense of humor! We are working hard at home and school to help Faith be an active participant in daily activities and life in general.
Our primary goals for Faith continue to be comfort, happiness, and health. Of course, we have plenty of other goals too but they are secondary to these. Overall, Faith is staying healthy! We are still really struggling with the chorea. We are still in the process of trying to figure out medications that will help without side effects that make life even more challenging for Faith. Unfortunately, we had to wean Faith from the diazepam. It made Faith happier and she was sleeping much better while on it but the increased secretions were very difficult for Faith. The coughing episodes that she was having were very concerning and made the risk for aspiration very high. The coughing episodes are better now and we have seen improvement in Faith managing her secretions. However, Faith is back to sleepless nights, extreme movement, very increased muscle tension, and agitation. We are in the process of increasing her gabapentin medication to see if that will help at all with her overall mood and agitation level. Then, we will be back to the drawing board to determine what to try next to help manage the chorea. We have been told that chorea can be very challenging to treat so we are anticipating a long road ahead to find a successful treatment. Prayers are appreciated for Faith right now through this rough patch!
Faith definitely has her challenges and struggles and we often feel pretty helpless when she is going through rough times. Things can get pretty stressful and daily life can seem pretty impossible for all of us. During these times, we remind ourselves of the blessing that Faith is to our family and to so many others. Faith, hope, and love-my motto and reminder of what Faith’s life is really all about! Faith makes all things possible, hope makes all things bright, and love makes all things easy. When things seem impossible, we keep the faith. When all we see is struggle, we look forward to overcoming yet another challenge. Faith is so loved and brings so much love to us! Without ever saying a word, Faith speaks love into the lives of so many people.
Happy 4th birthday to a truly incredible little girl who brings so much faith, hope, and love to this world!
Thanks to everyone who continues to support Faith and our family on our special journey! A big shout out and thanks to Rafael Marquez for creating http://superbabyfaith.com nearly 4 years ago and for continuing to support the sharing of Faith’s story by hosting this site.
Keeping the faith,
Faith is back to school and doing great! She just started her second year of pre-school. Her daily notes from her teachers and therapists have been so positive and encouraging. Faith is definitely making progress! Faith seems to be understanding more and showing a response more often to what is going on around her. I am so proud of this little girl! Check out the videos below of Faith’s beautiful smile and giggles:
(Click on the link for each of the videos above then click again on the link when the new page opens.)
I think these videos speak for themselves in terms of the progress Faith is making! 🙂 It is so great to see her so happy and engaged in various activities!
We seem to have worked through some of the issues Faith was having with managing her secretions. We made some medication changes that seem to be helping. Unfortunately, the chorea has not improved so we will most likely be doing more medication changes very soon.
Happy Back to School everyone!
Keeping the faith,
Click on the link below to read the article:
My favorite part of the article:
“Faith is teaching us important lessons,” said Debbie Chapuis, family support services coordinator of the Delta Gamma Center. “Each smile or giggle from Faith is a reminder that being able to see, talk or walk is less important than being able to receive and inspire love from others, and Faith is a pro at that!”
Well said, Debbie!
Keeping the faith,
We have spent a bit more time at the hospital this week than we had planned on. Faith has had a lingering cough for about 2 months now. For the most part, she has always struggled with clearing her throat and managing her own saliva. However, she was doing much better for awhile after we started her on Robinul (it helps to dry things up and reduce saliva). Recently though, she seems to be really struggling again and is really struggling to clear her throat at times. Lots of gagging, choking, turning bright red, breathing concerns, etc. She has seen several doctors the past few months so I always mention it to the doctors and make sure they listen to her really well to make sure she hasn’t aspirated and gotten something into her lungs. All the doctors have felt that she just sounded congested and “nasally” and didn’t have any concerns about her lungs. This past weekend she had some breathing issues which we resolved pretty quickly by repositioning her and adjusting medications but her cough just seemed a bit worse. Then, she started showing some signs of illness such as diarrhea and vomiting which we figured was something viral but the cough was still concerning. So to make a long story shorter, we ended up at the hospital because it was assumed she was going to need a chest x-ray to rule out pneumonia. So after the usual lengthy visit in the ER, the chest x-ray came back clear and we didn’t get any real answers. The recommendation was to follow-up with pulmonology and GI. I have made contact with these doctors and am sending them video of these coughing episodes for them to review before Faith’s next appointments. I am hoping maybe they can give us some suggestions in the meantime. One of the doctors in the ER felt that the coughing and Faith’s struggles with clearing her throat appear to be reflux related. I do feel that is a possibility and most likely part of the problem.
We had an appointment with Faith’s endocrinologist this week. We have been waiting to see if there was any change in her IGF-1 levels since her last blood work. Her levels are still very low. I could try to explain all the details that were explained to us with diagrams and lots of medical jargon but the short summary is that the doctor feels that Faith is not responding to the growth hormone since her IGF-1 levels are still so low despite her getting growth hormone injections for awhile now. We even increased her dose to see if she just needed a higher dose to get an effect. So, if she truly is not responding to it then we will not keep her on it. There is no point. So, what is the plan? First, the endocrinologist is going to go over all of Faith’s medical history and information again, do some more research himself, have his medical students do even more research, and then we will meet back with the endocrinologist in the next month or so to have a long discussion. We most likely will have to make a very big decision of whether or not to pursue IGF-1 treatment for Faith. There are many unknowns. A big question we have and the doctor even has is would it be safe for Faith? IGF-1 deficiency is very rare. Faith’s endocrinologist currently does not have any patients that have this. However, there are a few other children that have this that are seen at the same hospital. We are interested in learning more about possible treatment options and the potential risks and side effects to Faith as we approach making this decision. According to the endocrinologist based on Faith’s measurements from past appointments, Faith is not growing adequately. To us and to many others, it seems that she is growing and getting bigger. However, her growth is very slow and long-term it will most likely become more apparent. If we decide not to pursue treatment, Faith will most likely remain very small. The doctor did remind us that in terms of managing her care, lifting her, etc, that it may be helpful to us for her to be small. However, for us there are many questions and concerns that we have about other risks to her body that may arise as a result of the IGF-1 deficiency that we want to take into consideration. We definitely have many things to consider in this decision-making process. We are hopeful that we will have enough information to make an informed and educated decision of what is best for Faith.
Faith is still struggling with the chorea movements despite the addition of Diazepam to her daily medications. We are still in the process of increasing her daily dosage so there is still hope. If it not successful in getting the movement under control, we may have to consider other medications. Faith does seem happier and less agitated despite the excessive movement so that is improvement in itself.
Faith definitely has challenges and struggles but we are enjoying more smiles! Just trying to figure things out and make life the best it can be for our super girl!
Here are some fun summer pics:
Keeping the faith,