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