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

What a Big Girl!!

Faith just transitioned to her big girl car seat! She is looking very healthy in this photo! We are so thankful for Faith’s growth! She is still in the less than 3 percentile for her age, but for her height and weight she is in a healthy range.

Sorry, for the delay since my last post. Mama has been busy! Faith is continuing to work on rolling. She is still trying to figure out how to get her arms out.  Rolling will help her trunk get stronger which hopefully will help us to make some progress with sitting down the road. We are so proud of her hard work!

Oral feeds continue to be a priority, but progress is at a stand still. We continue to try new things and continue attempting to get Faith to eat pureed foods more consistently.

I am reluctant to say this because usually when I do then things take a turn for the worse, but at the moment sleep is much better. The Clonidine (sleep medicine) is like magic to get Faith asleep. However, we are still struggling with her waking through the night. Compared to what things were like without the medicine things seem great now! Life is definitely much more manageable! I think we have come to terms with the fact that sleep will probably always be a challenge for Faith. For now, we are going to enjoy the improvements!

Faith is still struggling with reflux/ and or secretion issues. We are not exactly sure what is causing her to cough, gag, and choke. However, it does seem that Faith is really struggling to manage her own secretions in her throat. Mike and I have been trained on suctioning and postural draining and percussion to try to help Faith when she is struggling. Of course, these aren’t without discomfort to Faith either. Faith’s issues are much more prevalent when she is hooked up for tube feedings which is currently about 16 hours a day. We have tried so many things to try to get improvement with little success. We continue to seek out possible solutions.

We started giving Faith growth hormone injections in April. So far, so good! She is tolerating the injections very well and for the most part doesn’t even cry much anymore.

A big goal for the summer is for us to really work with Faith on opening her hands. Faith is still tight fisted most of the time. She has made progress over the past 6 months or so but we really need to start putting more focus on stretching out her fingers. Faith’s hands are her eyes so it is very critical for Faith to use her hands to explore her world.

Faith is still enjoying water therapy and we hope that we will be able to continue to this therapy. She has shown great contentment and success in the water. We are hoping to have other opportunities to get her into the pool this summer in addition to therapy.

Faith is continuing to stay busy with therapy appointments. We are hoping for a slow June for doctor appointments. Things are looking pretty good right now that that will happen.

Faith is the sunshine in each day! What a blessing she is to our family!

So, pretty!!

Thanks for keeping up with Faith’s progress! Have a healthy and safe summer!

Keeping the faith,

Bridget

Run for Sight 2011

Team Super Baby Faith participated in the Run for Sight again this year to benefit the Delta Gamma Center for Children with Visual Impairments. Great job, Team Super Baby Faith for raising  $1,595.00. We truly appreciate everyone who ran or walked on Sunday, or made a donation if you couldn’t be at the event. The Delta Gamma Center is a great resource for our family and provides many services and programs to Faith and other children with visual impairments in the St. Louis area. We are grateful for your support and generosity! We look forward to expanding Team Super Baby Faith next  year and will be looking for a corporate sponsor to support our team! Here are some pictures of Faith at the Run for Sight:

Faith relaxing in her stroller with her sunglasses!

Faith and her cousin.

In other news, Faith seems to really be making some progress developmentally. The last few weeks she has really been working on rolling more consistently. At times, it is more of a half way roll but this is very exciting to us. Faith also just started vocalizing much more. We went through periods before where she had been vocalizing relatively well, but it just kinda stopped. We are hopeful that Faith’s development will start picking up a bit. Faith is smiling a lot and seems happy more often! We are working on a plan with pulmonology to try to make Faith more comfortable and address some of the issues she is experiencing with the coughing, gagging, and choking. Oral feeding is very inconsistent and continues to be a challenge. Some days she will do great and other days she won’t even open her mouth.  Thanks for your continued prayers for Faith’s progress and health!

Keeping the faith,

Bridget

Pneumonia, AGAIN…

Faith has pneumonia, AGAIN! This is the 4th time in her 19 months of life. We ended up in the ER Saturday when Faith had a fever in the 104 degree range. It was kinda weird because she wasn’t really symptomatic besides just seeming very lethargic and warm. She does have a bit of a cough now but that didn’t start right with the fever. However, Faith always seem to cough a bit anyway along with her gagging and choking issues so it isn’t necessary something out of the ordinary for her. In the ER, they did the chest x-ray which confirmed the pneumonia right away. The question now is what is causing the pneumonia. Is Faith aspirating or does she have some type of immunodeficiency that is causing her lungs to be more susceptible? We will be following up with pulmonology to discuss further. We have already discussed her previous pneumonia illnesses with them. We also requested immunology work-up in the past on her which came back normal. However, it is possible that more specific testing may be needed in her case. The four occurrences seem very excessive to us and we need some answers.

Faith is very lifeless and lethargic right now. This pneumonia is explained to us as being global and is covering a large area of her right lung. We are hoping that her recovery is speedy and that she will be back to herself soon. She is on antibiotics and her fever is down.

We are thankful that Faith was able to come home from the hospital and that we can manage her care at home. It has been a crazy weekend with all of the severe weather, tornadoes, and devastation. We were about a half mile away from where a tornado touched down Friday night.  Our thoughts and prayers go out to all of the people very close to where we live that have lost homes or are dealing with homes that are severely damaged. It is truly a miracle that there were no deaths during this disaster.

Hope everyone had a happy and blessed Easter!

Keeping the faith,

Bridget

April 14th

Two 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 approximately 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 was that my baby girl would be blind. The worst case was that she could have some type of chromosomal issue that could result in an extremely short life if she even lived at all. Bottomline, there just weren’t many answers or real explanation of the potential cause. 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. 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 all 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 parent resources to learn from.

Two years ago, I had no idea what life would be like today. I am so thankful to be sitting here typing this post with my beautiful and incredible daughter in my arms. I thank God for her everyday and am so fortunate to have her in my life.

Faith makes things possible, not easy!

Keeping the faith,

Bridget

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