Both girls were seen by their complex-care team at the hospital last month, and we wanted to share an update.
Sophie had some issues that developed over the past couple months, and we were able to discuss them with the specialists. They became very concerned seeing her unable to control most of her movements and constantly moving and wiggling. It is difficult to hold her, and her muscles contract and release constantly. Because of this issue, the doctors think she might be in pain or have some discomfort from lactic acid building up in her muscles. At first, they were concerned that her movements were seizure related so they called in a neurologist to observe her. Thankfully the neurologist was able to rule out seizures, diagnosed her with a muscle movement disorder, and prescribed a medication to help with this disorder. If it does not work, they said her disorder will continue to worsen. This has and will continue to affect her sleep and eating tremendously. They said that if the drug isn’t successful in aiding her eating, then she will need a g-tube and we will have to explore more medications.
Sophie has been on the new medication for a month now, and we are glad to see her improving behavior. She stills moves a lot but appears calmer overall; we are hopeful in these small improvements. Please pray that we will see Sophie become even calmer as we continue administering this new drug and that it will abate any discomfort she has. Her weight gain is starting to increase, but every night she is still up crying or fussing. We are in a trial period with the neurologist to figure out the correct dosage of her new medication, and we are very slowly increasing it as needed. We are fervently requesting for God to intervene and grant her relief through this drug.
The doctors were very pleased to see that Charlotte is continuing to gain weight steadily and her bottle feedings are going well. However, since the appointment, Charlotte has been choking on saliva more and more—it’s almost daily now. We have been having to check on her throughout the night to make sure her airway is cleared, and she is still breathing. Thankfully, we were able to have her doctor observe her a few days ago and prescribe two new medications: one to help with reflux and one for decreasing saliva secretions. We also will be receiving a hospital-grade suction machine to help clear her airways when she struggles to breathe. We are praying these small changes will help Charlotte breathe easier and give us peace of mind, especially at night.
Our prayer requests for this month are:
- For both girls to adapt to their new medications and that their quality of life will improve through these medications.
- Both girls will be going in for a g-tube evaluation next week, so please pray that all will go well, and the doctors will have wisdom in making decisions.
- We also have another appointment scheduled at the end of the month for Sophie to get fitted for a medical wheelchair and for Charlotte to be fitted for a medical car seat. We are praying for the insurance to approve these items quickly as it can take months to acquire them.
- Please pray as we begin a search for a larger car that can accommodate medical car seats and medical equipment as Charlotte and Sophie continue to have more needs.
In conclusion, we are so thankful for the many daily prayers that are made for our family. Truthfully, we do become weary while caring day and night for our girls, but we find so much satisfying fulfillment from God knowing He has entrusted us with this special task of caring for these two precious little souls. We find so much joy and comfort in the Lord. He is still granting us supernatural strength throughout the day and night, and we can continue running the race He has set before us. The goodness of God has been so present in our lives, and we continue to see daily blessings from Him. We have no reason to complain or worry when we see so much mercy and love bestowed upon us. We are thankful for our prayer warriors, we are thankful for our beautiful girls, we are thankful for eternal life, and we are thankful God is always only good.