First Week

Faith has been in the pediatric specialty hospital since Monday. Things are going pretty well. She has adjusted really well and has been working so hard. We are trying many new things in many areas. We are trying a new, higher calorie formula and have made a few changes with her feeding schedule. She is tolerating her feedings well as of now. She has been getting OT, PT, and speech everyday Monday-Friday. OT is working on sensory and feeding and speech is working on feeding as well as vital stimulation. Up until Thursday, Faith was getting vital stimulation twice a day. The therapists felt that it might be too much for Faith so on Friday we decreased frequency to once a day for vital stimulation. PT is working with her on many of the things that we have been working on already at home as well as throwing in some new ideas. Faith goes in the pool for aqua therapy for her PT session twice a week. Faith has had very busy days and has been taking good naps! The first few days she seemed really content and was sleeping really well. The last few days she seems to be going back to her typical sleeping patterns and has been more fussy. The weekend will be much slower. She had her only scheduled therapy session for the weekend this morning which was OT. However, Faith had a rough night last night so she was tired and sleepy during the session. When she was more alert, we took her to do some work/play on our own so she had a chance to get something in. We are also doing all of her oral feeding attempts on our own this weekend with her. I am ready for Monday already when her entire team of therapists and doctors will be back. The observation piece is so important when it comes to figuring out how to progress with Faith. We plan on having a conference next week to determine next steps and when Faith will be going home. At this point, it seems that we need to figure out a plan that we could follow outpatient. Lots to be determined and how we will make it all work!

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

Exhausting the Options

Faith’s last two weigh-ins have been rather discouraging. She is just not gaining weight despite everything we are trying. Today, she actually lost weight. Not a horrible loss (about 100 grams), but still a loss. This just makes no sense to me or Faith’s dietitian for that matter. Over the last three weeks, we have increased the amount of formula she is getting and still no weight gain. This makes me worried because at this point we just don’t have an explanation. Faith hasn’t gained any weight in the last 7 months and we have even had a few weigh-ins in which she lost weight. Since we know exactly what she is taking in nutrition wise, the only factor that could explain things is her energy expenditure. It just doesn’t seem to me like anything has changed in that area though. Faith’s therapies are the same, her physical development is the same, etc. I really can’t justify that she could be burning more calories than before since things really haven’t changed. We are increasing her formula volume again but I just don’t know how much more we can get in this child. Even just small increases seem to be difficult for her stomach to handle and her reflux just gets worse. We have been doing smaller bolus feeds with her during the day to get extra calories in addition to her overnight continuous feedings. I just feel like we are going to end up with Faith back on continuous feedings 22 hours a day. I don’t want this to happen for many reasons, but right now most of those reasons don’t even matter because she has got to get adequate nutrition for growth and development and that has to be our focus.

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

 

Keeping the faith…

So far October has not been the most encouraging month. We have had several follow-up appointments with specialists and further testing to dig deeper into Faith’s feeding issues.

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

 

Sneak Peek at Faith’s Inspiration Through Art Photo Session

I recently submitted an application and Faith was accepted into the Inspiration Through Art program. You can click on the link to read more about this program but it provides free photo sessions for children with special needs and children fighting serious illnesses. We are so grateful for the opportunity to participate in this program. Without this program, this session would not have been possible for our family. We had our photo session on Monday and Faith was so happy and content the entire time. We did all the photos outside and Faith seemed to really enjoy the experience. We were very fortunate to have an awesome photographer, Amanda Zika. She definitely has a heart for working with special needs children and did a phenomenal job of working with our family. She is also very fast and efficient! The photos highlight the true blessing Faith is to us! They truly capture how precious and beautiful she is! The photo session in itself made my day but then looking at these photos definitely put the icing on the cake. We can barely wait to see the rest of the photos!!

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

September Out and Abouts

I am happy to report that Faith has been healthy the last few months!! We are hoping this pattern will continue throughout the fall! Faith has lost some weight so we are working hard to get her weight back up. We had to increase the volume of her tube feedings since she is still not able to eat enough by mouth. We recently started a new therapy that we are hoping will help with her eating and speech. The new swallowing therapy incorporates vital stimulation. This involves electrodes being hooked up under Faith’s chin to stimulate and help work the muscles involved with swallowing. Faith is fed orally as the stimulation occurs. The therapist is also working on the  muscles in her face and neck to open pathways and increase blood flow. Faith is tolerating the therapy very well and is very cooperative. The same struggles Faith is having with eating are most likely related to her speech delays as well. We are currently doing this therapy only once a week. Many children do more aggressive treatment which could include 3-5 sessions a week. However, it has to be done in a hospital setting and the time involved and cost of the therapy would make it very difficult for us to increase frequency. We hope to get a better feel for her progress in the next few weeks and determine what our next steps will be.

Faith is struggling quite a bit with excessive fussiness and often times screaming that lasts for long periods of time. Faith has always been a fussy baby as she has so much going on medically, physically, and sensory wise.  However,  I am concerned about some of the recent issues she has been having. Mornings seem to be the toughest time so I am wondering if she is experiencing discomfort from her overnight, continuous feeding or if there is something else going on.  Patience, patience, patience as we try to figure it out!!

We have been enjoying the nice weather and getting out and about with Faith! Here are some pics from a few events:

Society for the Blind and Delta Gamma Center Family Festival

Faith and daddy with Fredbird

Faith and daddy with a bear from the Sensory Safari exhibit

Faith showing off her beautiful smile!!

Having fun in the bounce house!!

 

Family Day at Daddy’s Work

Faith and daddy with the Clydesdale

Faith holding on to Mama as she is being pulled by the donkey!

Hope everyone is enjoying the start of fall!

Keeping the faith,

Bridget

 

 

Happy 2nd Birthday, Faith!

Today, we celebrate Faith’s 2nd birthday! Life continues to be challenging and definitely not without struggles, but we are so grateful for our Super Baby Faith. She is such a blessing and we couldn’t love her more! It is hard to believe that next year at this time she will be starting school and getting all of her services through the local school district. We still have one more year with the state early intervention program so we are trying to make the most of it and do all we can to aid Faith’s development.

Looking back on the past 2 years, we have overcome many obstacles and are very thankful for that progress.  We would have loved to reach more of Faith’s developmental goals this year, but we just aren’t there yet. We are taking one day at a time and continue to pray for more progress with Faith’s development.

Your thoughts and continuous prayers help us through the challenges and many of your prayers for our family have definitely been answered. Thanks so much for all of your love and support these past 2 years!

Click on the link below to view a video I created with photos from Faith’s 2nd Year:

Faith’s 2nd Year

 

HAPPY, HAPPY BIRTHDAY TO MY SUPER BABY FAITH!!!!!!!!!!!!!!!!!!!

Keeping the faith,

Bridget

23 Months

 

Faith went peach picking for the 1st time a few weeks ago. It was a pretty hot day so we went early in the morning and didn’t stay outside long. Faith struggles with body temperature regulation so we knew we had to be cautious but still allow her the experience.

In less than a month, we will be celebrating Faith’s 2nd birthday! Time is passing, but many of our struggles are staying with us. We are looking into other treatment and therapy options to address Faith’s struggles with eating.  We want to exhaust all options and know that we have tried everything we possibly can for Faith to make progress with eating. Faith has been sick a lot this summer so that is concerning to us as well. Thankfully, the last few weeks have been much better. We are hoping that will continue!

The positives…

  • Faith got a new set of conformers this past week. She had the most growth I believe we have ever seen between visits this time around.  The ocularist was able to get much larger conformers into her sockets.
  • The last week or so we have heard some new sounds coming from Faith. Her vocalization is awesome! The other night  she almost sounded like she was babbling a sentence of various sounds. We have never heard her do this before and were very excited!
  • Faith is doing much better managing her secretions with the help of medication. This is making a huge difference for her!  She is not coughing, gagging, and choking hardly at all anymore. She seems to be tolerating her tube feedings much better as a result. Unfortunately, Faith has to come off of the medication for a week after a 3 week period that she is on the medication. We experienced the week off this week and Faith was back to her old struggles and discomfort. So glad we start her back on the medication tomorrow!

Thanks for catching up on Faith’s progress! We ask for your continued prayers for Faith’s development and for patience and wisdom for Mike and I through the daily challenges and decisions.

Keeping the faith,

Bridget

 

 

 

ican conference 2011

We attended the International Children’s Anophthalmia/Micropthalmia Network (ican) conference this past weekend in Boston, MA.  This was Faith’s first time flying and she did an awesome job. We got very lucky and she slept on both flights!

We started off our time in Boston by participating in the multidisciplinary clinic at Tufts Floating Hospital for Children. We met with the genetics team, a physiatrist (physical medicine and rehabilitation doctor), and an oculoplastic surgeon. I am not going to go into all the details because it can be very overwhelming and would probably take me hours to write about. Instead, I will summarize. From a genetics standpoint, we already have a diagnosis(SOX2) for Faith so we are a step ahead of many families who are still searching for the cause of their child’s anophthalmia or microphthalmia (A/M). However, it was very helpful to us to talk with the geneticist about our concerns. Also, we were able to meet other families that have children with the SOX2 mutation which was very insightful.  From a physical medicine standpoint, there are many concerns about Faith’s gross and fine motor delays. We received many recommendations about bracing, equipment, etc. The oculoplastic surgeon had several recommendations which included considering hydrogel expanders as a way to speed up the process of expanding the orbits. We did learn from other families at the conference that many of the children with SOX2 have a much more difficult time with expansion, conformers, prosthetic eyes, etc. We have considered hydrogel expanders in the past but it most likely would require trips to Philadelphia which doesn’t seem to be in the cards right now for our family. Hydrogel expanders are also a newer approach to expanding the orbits which leaves us with many questions.  If anophthalmia was the only issue Faith was challenged with, our thoughts may be different. However, right now we are just trying to get Faith healthy. She is sick so often and constantly struggling with some type of infection or virus it seems.  For now, we are continuing with the conformer process to ensure that Faith’s face with grow as symmetrically as possible since she does not have eyes to stimulate growth. We will make other decisions about further treatment when the time comes.

We are so grateful for the opportunity and experience of attending the ican conference. This trip would not have been possible for our family without scholarships from the Missouri Deaf-Blind Project and Productive Living Board as well as help from the Manor New Tech Class of 2011,  friends, and family. Thank you so much!

For the weekend, we lived in a world where other people experience many of the same struggles and challenges that we face on a daily basis. Although all of our children share the common diagnosis of anopthalmia or microphthalmia, all of our children are very unique and all have various strengths and struggles. It was great to be able to talk and connect with other parents who are ahead of us in this journey to get insight and seek advice. Before the conference, I felt like I had a pretty good support group of parents with children with A/M but now that group has increased even more!  It was so great to meet in person several of the moms that I have met through online supports groups.

The conference was held at Perkins School for the Blind. This is where Helen Keller went to school. It was a beautiful campus! The conference topics included:

  • Oculoplastic Intervention in a Child with A/M
  • MACS-A support group in the UK
  • Genetic Research of A/M
  • Orientation and Mobility
  • Living with Microphthalmia-My Experience and Suggestions for Support and Information( guest speaker was born with microphthalmia)
  • Family Dynamics When a Child Has Special Needs
  • Research Frontiers-Hope or Hype?

ican and the genetics team at Albert Einstein Medical Center in Philadelphia have been a great support and resource for our family since we first found out that Faith’s eyes did not develop during my pregnancy. I could not imagine going through this journey without their help and support. It is disappointing that this outstanding organization is struggling to continue to do what it is doing due to financial constraints.  We are going to be brainstorming along with other families on how we can raise funds to ensure that  families will continue to get the help and support they need when faced with such as rare condition. Along with other families, we want to ensure that there will be another conference in 2013!!

Faith with "MACS", the monkey!

Mike and Faith outside the Howe Building at Perkins School for The Blind.

 

Summer Fun!

Faith loves the water! Click on the link below to watch a video of her at the pool:

Faith at the pool

Playing catch up…

I will be playing catch up on this post and will try to summarize what Faith has been up to. I am super busy these days so I just haven’t had the time to post in awhile. Faith is now 21 months old!

Faith is definitely making progress with her motor skills, it is slow and subtle but we are really seeing her do some great things. Rolling is continuing and head control is getting better. Faith is holding up her head for longer periods of time. We are still dealing with the head flop, but overall it is getting better.

Oral feeds are about the same. However, Faith seems more interested in licking and tasting. We are working with her on licking lollipops and popsicles.

Unfortunately, Faith had pneumonia again this month. We just finished up another antibiotic. This was her 6th pneumonia in 21 months. Obviously, very concerning to us. We are trying a new medication called Robinul that helps to reduce secretions. We suspect that Faith may be aspirating her own secretions when she coughs, gags, and chokes. So far, so good! She seems to be tolerating the medication well and does seem to be doing better. We are hoping for a healthy rest of the summer!

Faith just got her new Kid Kart! This will serve as a stroller, but when we are at home the high/low base will serve as a positioning device as well as a place for Faith to play and eat. It has a tray that latches on so we can put toys on it for Faith to find. She looks so big in it! Here is a picture of Faith in the Kid Kart high/low base:

Faith’s smiles and laughs are always the best part of our days. She is such a beautiful little girl that continues to bless us in so many ways. We are so proud of her hard work and determination!

Keeping the faith,

Bridget

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