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

Faith Update

Faith hanging out at home in her St. Louis Cardinals gear on opening day!

Things have been a bit hectic since my last post. Faith was a sick little girl! She ended up being admitted to the hospital last week for a couple of days. She was admitted due to respiratory distress. Her respiration rate was double what it should have been, her breathing was very rapid, and overall she was just really struggling. She was on oxygen for awhile to give her a little help. It was determined that Faith had parainfluenza. Faith had all the typical respiratory stuff plus a croup cough. This flu hit Faith especially hard most likely because her tone is so low in her trunk/ neck region. It is much harder to cough forcefully and fight a virus when your body is just much weaker than a typical developing child. We are hoping that Faith’s development will progress by next winter so that if she gets sick her body will be able to manage it better.

Since Faith was discharged from the hospital last Tuesday, she is doing much better. She has actually been very happy and hyper. She is playing well and we are working very hard on her development. Oral feeding continues to be a top priority. We are adjusting her tube feeding schedule to see if it will influence her eating behavior at all. Lots of patience, determination, and brainstorming to hopefully someday get Faith eating on her own!

Faith went to the dentist for the first time today. As suspected, Faith has at least one extra tooth. We are going to wait a couple of months and see what happens. Unfortunately, the tooth most likely will either have to be pulled or removed surgically. If not removed, it could cause issues with her permanent teeth and tongue. I was really hoping that Faith was going to catch a break but due to her mid-line issues we figured we would have to deal with teeth problems at some point. For now, we will just be watching things and wait it out. It was reinforced today that we need to start brushing Faith’s teeth. Due to Faith’s oral aversion, I’m sure this is going to be traumatic for all involved. After talking with the dentist today, I learned that there are different concerns for children who are primarily tube fed vs. fed orally with plaque build-up, etc. so it is really important but will definitely be challenging.

We are hoping for a healthy spring for Faith! Happy Spring, everyone!

Faith's 1st Easter egg hunt of the season at the Delta Gamma Center!

Keeping the faith,

Bridget

Out and About

Faith has been struggling with getting over being sick. It seems like she is always sick or trying to get over being sick. The last 4 weeks or so she has been running fevers or at least low-grade temps. She was also very congested, had a bad cough, and was vomiting. Faith’s reflux has also been really bad again.  Last week, her doctor heard wheezing while listening to her and so we had to start her on  breathing treatments. Ironically, through all the sickness Faith’ s sleep has improved greatly. It is hard to get too excited becuase we don’t know what tomorrow will bring. For now, we are enjoying the improvement and the fact that we seem to have found a medicine that seems to help her sleep. Although it is very slow, Faith is showing progress with her development. She is holding up her head more and doing better on her tummy everyday. She is working hard!

Faith seemed to be feeling better today so we headed out this morning to the Delta Gamma Center for Children with Visual Impairments for their weekly session. It was nice to get out and about for a fun activity with Faith! Faith enjoyed riding around in a wagon. She participated in her 1st easter egg hunt of the season! They even had eggs that talked and made sounds!!  Here are some photos from today’s egg hunt:

Nice fine motor, Faith!!

Hanging out in the wagon with her eggs!

We are enjoying the nice weather and have gotten out for a few walks in Faith’s stroller! We are hoping that Faith will be healthy this spring and that her progress will continue. We are so proud of this little sweetheart!

Happy Spring!

Keeping the faith,

Bridget

Happy 18 Months!

Faith is 18 months old today! Wow, Faith is going to be 2 years old before we know it! The last week or so we have observed Faith doing some great things. She is starting to learn to play better with toys. She is trying to roll over more and more. She can get about half way right now. Her head control is getting better and she is starting to lift up her head when she is doing tummy time. It is a huge accomplishment that she is spending  more time on her tummy tolerably. She is so much calmer. Tummy time used to be a major struggle and involved a great deal of screaming. Today was a very positive day of therapy appointments. Faith really showed off her progress! We are so proud of her! She is working so hard despite the many challenges and struggles. We are hopeful that things are really going to start picking up with her development.

Faith continues to have a busy schedule of therapy appointments. Doctor appointments have been plentiful but should become less frequent soon. Faith loves water therapy. It makes me so happy to see her so calm and content! I wish we could do water therapy everyday!!

Our biggest struggles right now are still sleeping and eating. Faith’s neurologist is working hard to help us sort out the sleeping issues. Faith’s sleep issues(as well as many of her other challenges) as we have suspected all along are neurologically based. Since we have tried so many things will no success, it makes very good sense. Faith is going through cycles where is staying awake for extremely long periods of time. She went 24 hours a day last week with no sleep. She had a few days with only 2-3 hours of sleep in a 24 hour period. Obviously, this is very concerning to us! Faith’s neurochemistry and brain functioning is different than a typical child which is about the best explanation that we can give for her abnormal and erractic sleep patterns. Sleep will probably always be a struggle. However, our goal right now is to figure out what we can do to improve Faith’s sleep. Medication seems to be our hope right now. We are currently trying a new medication. We have seen some improvements in Faith’s sleep. The medicine puts Faith to sleep, but we are still struggling with sleep maintenance. Some nights are better than others but Faith is still waking fairly often. We are still trying to figure out the proper dose for effectiveness.  It seems that after a day or two on a particular dose that the medicine becomes less effective. Almost, as if Faith is building a tolerance very quickly. We are going to give the medication some time but it is still undetermined if this medication will be the right drug for Faith. Time will tell, but we may have to look into other possibilities.

Faith is really struggling with eating. She will barely open her mouth to try oral feedings. She is really fighting us on this. I feel that having to stop oral feeds per doctor’s orders was a major setback for Faith. I understand the concern for her health but the break has really affected her willingness and skills. I also feel that since eating has always been a struggle she has developed negative associations with eating.  The discomfort from past struggles with reflux also adds to the complexity of her issues. We are starting back with the basics. Right now, we are working on tastes, smells, and lots of oral stimulation. We are also working on trying to teach Faith how to swallow again. We are putting drops of water and apple juice in her mouth via a syringe when she has the pacifier in  her mouth. This allows her to swallow without her tongue getting coated with baby foods. We have a long road ahead with getting Faith to eat. We just hope and pray that one day we can get her eating on her own and never have to hear the sound of her feeding pump again! For now,  feeding is truly a journey of baby steps and many challenges that requires a great deal of patience and persistence.

We have been so blessed to grow with our Super Baby Faith these past 18 months!! Thank you all for your love and support! Your prayers are powerful and greatly appreciated!

Keeping the faith,

Bridget

Faith

I received this poem in the mail this week from a friend. It is very applicable to life these days. I thought I would share…

Faith by Richie McDonald

Life can take you down a dead end road,

In a blink of an eye, it can spin out of control.

When you feel like you’re forsaken, and feel like giving up,

When there’s nothing to believe in and no one cares enough,

Faith gives you hope, hope gives you strength.

Strength gives you courage to go on each day.

When you’re praying for answers to things you can’t change,

When it’s out of your hands, you can hold onto faith.

It’s the reason that a broken heart can mend,

Why you can pick up all the pieces and learn how to live again,

You can’t see it with your eyes, or touch it with your hand,

But it moves through the soul of a woman and a man.

Faith gives you hope, hope gives you strength.

Strength gives you courage to go on each day.

When you’re praying for answers to things you can’t change,

When it’s out of your hands just hold onto faith.

Cause eyes have been opened and crutches thrown away.

Lives have changed forever with just one ounce of FAITH.

Renewed Hope

I can sit in my chair and play with the help of my new Benik! Love, Faith

We had another busy week of doctor and therapy appointments. We met with several new doctors this week. While we were waiting to get into the new GI doctor, we tried Faith on continuous feedings which I mentioned in our last post. This proved to be a good decision for us. It seems that for right now that this may be the best things are going to get until the doctors can figure out what exactly is going on. We have had minimal spitting up since switching to continuous feedings and no vomiting at all. However, Faith is still gurgling as well as coughing and gagging quite a bit. When we met with the GI doctor, he felt that the issues are more in her throat. Of course, the day of the appointment she was not displaying her normal symptoms. So, we are going to try to take some video for the doctor so he can experience what is going on and see if he can figure out some next steps. Since the continuous feedings are controlling the spitting up, a Nisson fundoplication or GJ tube is not recommended and could create additional issues for Faith. It is quite possible that  Faith’s low muscle tone in her neck and trunk is making the non-acid reflux and the issues going on in her throat much worse. The GI doctor feels there is a neurological component with all of the issues we are dealing with right now. We completely agree!  We are hoping to get into a new neurologist soon.

Faith is also being referred for a speech therapy evaluation. Faith gets hearing and occupational therapy services already that overlap with this area. However, due to her extensive delays with speech and language as well as feeding struggles the doctor wants her to have an evaluation. He is primarily interested in the evaluation to further assess her eating issues. We feel that we need a  lot of support in this area so this will hopefully be helpful to us as well. In the meantime, we have been given the “ok” to resume oral feeds. Obviously, conservatively and with caution until we have some more info from the evaluation.

We also met with a new ENT. We are starting Faith on a new regime in an effort to get the congestion until control. Unfortunately, Faith’s midline structure is most likely making her congestion issues more complicated. With everything being small and narrow, it is just much harder to get the congestion under control. Based on the ENT’s exam, she is not suspecting any severe structure issues that surgery would help or resolve at this time.

It seems that this week started a new cycle of Faith’s atypical sleep patterns. Instead of staying awake the entire night, she is getting about 2 hours of sleep during the night. She is going to bed anywhere between 11 p.m. and 1 p.m. and then wakes usually within an hour or two and then is off and on throughout the night. Usually, we can get a 2 hours stretch somewhere. She is still constantly waking. If we could just figure out what is causing her to wake!! One other change this past week has been that the majority of the time when she wakes, she calms pretty easily. Overall, the past week has felt a little more bearable. Just the fact that she is sleeping at night at all is a huge relief for us. Obviously, things are still rough and we hope and pray for some real relief for all of us soon. Faith’s need for sleep is so great especially with her hormone deficiencies. We are very concerned about how the sleep deprivation is affecting her growth hormone production as it is released in deeper stages of sleep. Based on Faith’s sleep study, we know that her stage 3 and REM sleep are very inadequate.

Since the shift in her sleep patterns this week, I have been working very hard to really focus on routines and naps during the day. She did much better with naps this past week. It is tough with Faith since she is so sleep deprived, but I have had to control her naps much more. She is limited to 3 hours during the day. For me, she normally doesn’t sleep more than that anyway but I am trying to be very consistent. The shift has allowed a starting point to try again to get patterns established. Ultimately, we need to get her in a good pattern that she can sleep at least 5-6 consecutively at night. The idea might seem rough short-term, but our goal has to be long-term. It could take years for her body to adjust, so we have to do everything we can to try to establish patterns and routines now. Due to the fact that  her sleep issues are most likely neurological and related to disturbed circadian rhythms resulting from her blindness, this is even more imperative.  Unless you have been in our situation, you cannot even begin to imagine the frustration and physical and emotional toll it takes on a family to be so sleep deprived. You learn to do whatever you can to survive and do whatever you can to promote some hope for the future.

We don’t have any magic solutions and nothing  has really changed yet with Faith’s areas of concerns. However, we feel that we are moving in the right direction. We have a team of doctors that are collaborating, discussing, and trying to help us work through Faith’s many issues. We have needed this for a long time and we are thankful that we have finally achieved this.  We have some renewed hope!

Check out Faith in her new Benik:

Awesome trunk support from the Benik! Look at that head up and the upright position. Go Faith!

 Keeping the faith,

Bridget

17 Month Update

I am running low on physical and emotional energy right now so this will be a quick update.  We continue to be very sleep deprived and are just trying to get through each day. Faith is averaging a total of 5-6 hours of sleep a day. We are lucky if we can get a 2-3 hour stretch of sleep at a time. The minimal sleep she is getting is not at night.  None of her doctors can figure out how to help us with this struggle.

We saw Faith’s endocrinologist this week and now will be determining next steps on the possible start of growth hormone injections. We are continuing to treat her for the cortisol deficiency as well.

We have very important appointments coming up next week with GI and ENT. We are hoping to work through many concerns with those doctors. Faith’s reflux is much better with the continuous feeds but she still has symptoms. She is also still very congested the majority of the time.

Faith started water therapy this week. It was the positive highlight of my week! She was so calm and content in the water. I feel that it will be a great therapy for her and look forward to watching her progress.

Faith also went to the ocularist this week. It was good to find out that she is making progress. She was ready for a new set of conformers. Progress has been very slow, so this was good news for us!

As soon as we wrap-up all of the upcoming consults, we hope to organize a conference with all of Faith’s doctors. We really need to come up with a plan to improve her quality of life. Mama wants nothing more than to see her SBF happy and content! She deserves the best! We are praying for rest for all of us so that we can be the very best for her!

Happy 17th months to my best girl!!

Keeping the faith,

Bridget

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