We are so thankful for this progress! I smile so much just watching her smile! I love her smiles and laugh so much! Our goal for so long has been for Faith to be comfortable and happy! It seems that we are finally getting there.  We are trying to work on oral feeds more again, but not pushing it. Faith seems more interested many days so we are following her lead. A tablespoon is a tablespoon and if she can do that consistently without getting fussy and refusing then we are making progress. We are really trying to keep the experience positive and productive. Faith has also been allowing more oral stimulation which is a huge improvement. Hopefully, we can make some progress with tooth brushing soon! Baby steps for now!

Faith is gaining weight! She was up to 23 lbs at her last weigh-in. I anticipate that her weight will be up again at her next weight check. She is actually starting to get some chubby thighs! I think her endocrinologist will be happy when he sees her next week as he was very concerned with her growth.

We have several specialist appointments coming up but other than that fortunately doctor visits seem to be decreasing. Faith still has a full appointment schedule for all of her therapies. She has been doing really well in her sessions. We are hoping to see more progress in her development since she seems to be feeling better overall. There are definitely subtle things already happening such as Faith keeping her head up for longer periods of time.

Faith is getting ready to be a big sister! Check out pics of her in her big sister shirt:

Click on the link below to watch a video of Faith waking up happily from a nap:

Waking up!

I continue to feel so blessed to be Faith’s mother. I love her more and more everyday and thank God for bringing her into our lives and watching over her and protecting her!

Keeping the faith,

Bridget

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Faith on New Year's Eve!

We are hoping that 2012 will bring progress and resolution to many things for Faith! Faith is still struggling with reflux and gas issues that can make her very miserable at times. We are still trying to get her back to handling the rate we were at with her tube feedings before she got sick. We are slowing increasing the rate and so far she is tolerating the small increases. We had to switch her back to the lower calorie, semi-elemental formula temporarily since she was struggling so much. We hope to slowly transition her back to the higher calories formula soon. We are also looking forward to meeting with a new GI doctor.

We saw Faith’s neurologist last week and we are trying a new medication for her muscle tone. We are testing it out to see if it will help with the increased tone in her arms and the fisting she does with her hands. Since Faith has very low tone in her head, neck, and trunk it is hard to say if this medication will give helpful results. We have agreed to give it a try. It will be a long process as we are starting off at a very low dose and frequency.

Faith had an EEG a few weeks ago as were were concerned that she might be starting to have seizures. She was having episodes that included shaking and stiffening that were often triggered by a musical stuffed animal. The episodes also occurred randomly without any particular stimulus. We were able to catch one of the episodes during the EEG. At this time, it does not seem that these episodes are seizures. However, it seems that they are definitely resulting from something neurological and we just don’t really have any conclusive answers right now to what is causing them. The onset of the episodes was sudden and startled us as we had never seem Faith do anything like this before. We know that with the SOX2 mutation and Faith’s brain abnormalites that she is at high-risk for having seizures. Seizures often appear sometime in early childhood for children with SOX2. For now, we are keeping an eye on things and trying to get additional video for her neurologist.  We are also waiting to get more information from the EEG report as abnormal activity may have been documented.

It seems that we have regressed with sleep again. Faith’s sleep medication is just not working well many nights. She is doing lots of crying and waking very frequently. We used to be able to get 2-3 hours of sleep out of one dose when she was sleeping better. Lately, she is waking every 30 minutes to an hour. Some nights reflux is definitely not helping the night-time situation but the last few nights she doesn’t seem to have any identifiable discomfort that is causing her to be so restless and upset. The medication she is on still seems to be the best choice in terms of safe use for her age and medical issues so we don’t have many other options without taking risks that we aren’t willing to take right now.

In other news, we have some big changes coming this spring to our family as we will be welcoming a new baby boy! Faith will be a big sister! We will have our hands full for sure! We look forward to Faith having a sibling and we hope that they both will help each other in their development. We are very grateful that our baby boy appears to be growing healthy and strong!

Faith and Frosty!

Hope everyone has a great start to 2012!! Wishing you good health and happiness this year!

Keeping the faith,

Bridget

Faith truly has been the best Christmas present to us the past 3 years! Here are some pictures of Faith from Christmas Eve and Christmas Day:

Keeping the faith,

Bridget

Right now, Faith is still fussy and restless at times. Overall, she is doing much better and finally got some sleep. For about 3 days, Faith was unable to sleep more than 2 hours each day. Her sleep medicine wouldn’t even help so we were very concerned about this additional stress on her body and her ability to recovery from illness without adequate rest.

The last few weeks have not been very productive in terms of Faith’s therapy sessions. It is hard to know if this is solely due to her being sick or if we are just seeing more regression. She seems to be struggling more with sensory issues and is just more fussy during therapy sessions. We are hoping that we can get Faith back to her baseline soon. We will be following up with her endocrinologist, neurologist, and GI doctor in the next few weeks to address our concerns.

Feeling so helpless when Faith is struggling is one of the worst feelings and is so emotionally draining. We hope to learn ways we can help her.  We just want Faith to be happy and comfortable so we are hoping her team of specialists can help us achieve that for her. We are hoping that Faith will have a healthy rest of the holiday season and that we can make some progress in 2012! Thanks for all the thoughts and prayers during Faith’s recent hospitalization.

Keeping the faith,

Bridget

Faith will be continuing intensive therapy on an outpatient basis probably until the end of the year. Her sessions include occupational therapy, physical therapy, and speech therapy. So, approximately about 6 more weeks is the plan as of now. She will also  be continuing her therapies through the state early intervention program which includes her vision and hearing services. Right now, we are really working on sensory integration, oral feeding, and physical development. I really feel that if Faith can make some progress with her physical development that oral feeding will improve as well. We are continuing to strengthen her muscles and help her learn to manage her tone issues. It is also vital that Faith continues to gain weight for her overall growth and development.

We have a long road ahead with everything! There are no quick fixes. Faith is on her own timeline and only God knows what the future holds for Faith. We just want to ensure that we are doing everything we can to help Faith reach her full potential. Faith is working very hard as always and seems to want to do so much more than she is physically able to do. We hope that we can help her get to the point that she can use up more of that energy! I feel that I have learned some new things that I can work on with Faith as well through observing and participating in her therapy sessions with her.  I think getting full nights of sleep gave my brain a chance to rejuvenate and gave me the chance to take in new ideas. I always have plenty to learn and fortunately have so many great therapists to learn from in both home and hospital therapies!

Thanks for keeping Faith in your thoughts and prayers over the past 2 weeks! We were very fortunate that things went well and that Faith is now back home. Many families spend months in this type of hospital setting so we know that despite Faith’s challenges things could be a lot tougher. For now, we ask you to pray for continued weight gain and improvements in development for Faith.

Keeping the faith,

Bridget

We are very fortunate that this facility is close to home and available to us for Faith’s needs. It truly is a nurturing place with very caring and knowledgeable staff.

I am so proud of Faith! Despite all of her daily challenges, she works so hard and is the most incredible little girl I have ever known! I am so lucky to be her mama and for the opportunity to learn so much from her everyday. I just hope that she knows and feels how much we truly love her.

Thank you all for your continued thoughts and prayers! We are so grateful for all of the love and support as we strive to help Faith reach her maximum potential!

Here is a picture of Faith getting a bit of a break today playing in the balls in the sensory integration room:

Keeping the faith,

Bridget

It seems right now that a big and difficult decision we have made is definitely for the best. Along with recommendations from many of Faith’s doctors and therapists, we have decided to admit Faith to a pediatric specialty hospital for observation and intensive therapy. This has been a possibility for quite some time but there were obstacles and we were trying other things outpatient first. We anticipate that Faith will be admitted for a few weeks. This will allow the team of doctors and therapists to get the big picture with Faith. They can observe her 24/7 and hopefully figure some things out. Nutrition and weight concerns, sleep, development, eating, and much more can all be closely monitored, observed, and worked on. Faith will get her regular therapies, but more frequently and intensively. Faith will also be able to get more frequent vital stimulation (swallowing therapy) which will be a better indication of the effectiveness of this type of treatment for Faith vs. the one time a week we have been doing it.

We have always felt that we have to exhaust all the options available to help Faith. Some things we can’t change, but there are areas in which we feel we can improve Faith’s quality of life and maximize her potential. She deserves to be comfortable, healthy, and happy. Faith does seem to be much happier and healthier the last few months. We are seeing more smiles which are just amazing and I can actually say that Faith hasn’t been sick since July. We hope that we can make the same progress in other areas. In terms of the nutrition concerns, we hope that by addressing things now we can prevent Faith from more drastic options.  We are hoping that a nurturing and therapeutic hospital environment will be a much better place to work out some of these issues vs. a forced admission to a regular children’s hospital.

We ask that you please pray for us these next few weeks. Please pray that this admission will help us to make progress and give us direction on how to prioritize Faith’s needs, treatment, and therapies.

Keeping the faith,

Bridget

Faith had her follow-up appointment with her endocrinologist and not surprisingly she has really not gained any weight in six months. We have a phenomenal dietitian that works with us very closely and weighs Faith every 2 weeks so we knew that her weight was not changing. It is also pretty obvious when your 2 year old can wear the same clothes that she wore when she turned one. Faith even lost some weight but luckily through some changes we were able to get her weight back up. My concern is that we have maxed out the amount of calories Faith can take in per ounce at this point by tube. We are adding Duocal to her formula. We did try to cut back a bit on her tube feeding in an attempt to stimulate her hunger and try to get her to take in more calories by mouth. However, Faith just did not respond the way we hoped to with her oral feedings despite trying to feed her extremely high calorie blended foods to get the most bang for every bite we could get her to eat. We tried increasing her rate per hour of formula going in and that resulted in major throwing up. It is very evident that Faith can not handle even very subtle increases in the rate of the formula entering her stomach. We have had to increase the length of continuous feedings since we cannot increase the rate due to Faith’s intolerance. I feel like we are taking many steps back again and with Faith’s weight being a high concern again we may have to put her back on tube feeding 20-22 hours a day. I am hopeful right now that we have things under control and she will gain weight at her next weigh in but her endocrinologist is monitoring things very closely and mentioned that we will have to consider other options if she has not gained adequate weight at her next visit. The good news is that Faith is growing in length since she has been on the growth hormone. Now, our goal is to get her to gain weight proportionately with her increases in length.

Since oral feeding has been such a struggle, we started vital stimulation about a month ago. I mentioned this in my last post. We are continuing to do this therapy at this time. The speech therapist that works with Faith along with Faith’s pediatrician recommended doing another modified barium swallow test to determine if Faith was still aspirating and to get a better picture of what is really going on when Faith is trying to eat. It had been almost a year since her last swallow study so we agreed to do it. The speech therapist also thought doing a Fiberoptic Endoscopic Evaluation of Swallowing (FEES ) study may be beneficial to gather more information. This test is done with an ENT doctor so we thought it might not just be valuable for swallowing information but also to get another opinion on many of our ENT concerns. We are always trying to find out anything that could help us piece things together to help Faith.

The FEES study is not pleasant for a child to go through so I am a bit disappointed that we didn’t get more information from it. Many of the questions that I asked were not addressed as I was told they would be. Without going into all the details and to prevent myself from getting frustrated all over again let’s just say that much more aggressive treatment options were prematurely suggested (without even really knowing Faith or all of her medical history) that I do not feel are appropriate nor medically necessary for Faith at this time. Overall, the FEES study did not give us any remarkable information that I feel will help us at this time.

The swallow study was informative but definitely not what we wanted to hear. Faith did aspirate on the swallow study. She is also struggling with nasal regurgitation which is most likely causing her to get fussy and uncomfortable during feeding. Along with a sensory component, Faith’s muscles are just too weak to push food from the front of her mouth to the back. We were told that Faith will never be an oral feeder. No parent wants to be told that their child will never be able to eat by mouth. However, more concerning to me is Faith’s difficulty with liquid tube feedings. As Faith gets older, her caloric needs will be greater which will require her to get even more liquids through the tube. Even if Faith can only take a little bit by mouth it is less liquid that she has to take in through the tube. I am not giving up on Faith. I know that the odds are not in her favor. They aren’t in any areas of her development but we aren’t giving up on everything else either. We realize that we need to be cautious because aspiration could cause issues with her lungs but that doesn’t mean that we have to just stop all together. No doctor has told us we need to stop at this time due to health concerns. If we reach that point, then we will revisit our decision. We will continue to offer her oral foods and work with her patiently to keep those eating muscles in use. Through vital stimulation, the muscles can get stronger which could help Faith greatly. Since Faith has been on Robinul (a medicine that reduces oral secretions) she has not had pneumonia. We really felt like Faith was getting pneumonia because she was aspirating her own secretions. She was gagging and choking so much it only makes sense that her airway was probably open and saliva was getting into her lungs. The little bit that Faith is taking by mouth does not seem to be putting her at risk for health problems. We have had to stop oral feeds with Faith before and we know how much she regressed and how difficult it was to get her to even open her mouth when we were allowed to resume oral feedings.

We will be talking with Faith’s doctors more about the swallow study to determine next steps. I feel like I have got into a good routine with Faith on many things and that she is doing better with feeding. Some days I can’t get her to take anything, but that’s ok because that’s her way of telling me I don’t have it in me right now. Other days, she does great and eats almost a whole container of applesauce. Faith is a trooper and is doing her best despite the many challenges she is faced with. Some times she has more strength and endurance than other times. Faith can eat, she just isn’t consistent and has a lot going against her physically. Only God knows what the future holds for Faith and I am continuing to put my trust in Him. So many of Faith’s appointments lately have been mentally draining and discouraging but at the end of the day what I realize is that what Faith needs most is love. No matter what else is going on, how poor the outlook is, no matter what any therapist or doctor tells us, I need to just give her all the love in the world that I have. Some days I get so caught up in being all of her therapists, her nurse, and her personal assistant that I don’t get to enjoy just being her mother. No matter what Faith can or cannot do, she is my girl and I love her more and more everyday! I couldn’t be more proud of my Super Baby Faith and always want to enjoy every single moment with her!

Keeping the faith,

Bridget

Click here for a sneak peek at Faith’s Inspiration Through Art Photo Session.