Journal entry by Kristen Rohde —
God willing, Georgia will become a big sister next Monday, November 12 at 10am! We are excited to meet baby Rohde #3 and I’m thankful for a healthy, comfortable pregnancy. The past 39 weeks have certainly gone by quickly with Owen and Georgia Grace keeping us busy. :)
Continued issues and prayer requests for Georgia Grace are hearing and vision, frequent reflux and fear of aspiration, oral motor skills, muscle tone problems and developmental delay, and of course just health and safety as we head into respiratory season. As simple as it sounds, a big prayer request is always for wisdom and discernment in both the little and large decisions.
We continue to feel somewhat in the dark on Georgia’s hearing and vision, which are obviously vital in teaching her how to communicate. We know she can hear and see, but aren’t confident in the quality. Unfortunately, Georgia’s strabismus eye alignment surgery in the spring didn’t provide the correction we were hoping for and, since we can’t get a clear picture of hearing, even through a variety of measures and tests, we along with our ENT and audiologist aren’t confident on next steps such as hearing aids since we wouldn’t know what to set them to. Since Georgia is anatomically normal in both of these areas there are a lot of corrective procedures that she is not a candidate for. If Georgia’s hearing/vision problems occur more as a result from neurological deficits or a processing issue, there’s really nothing that can be done right now. So we continue to try and help her compensate as she can, take comfort in the fact that she seems to hear and see us and her toys well enough to reach and touch or turn her head in response, and hope that time will tell us more.
As we approach Georgia’s second birthday, we are thankful for her mostly healthy second year, but we continue to be discouraged by her developmental delay. Her head control is still poor and things like being able to sit up on her own seem very, very far away and at times unlikely. Small tasks that we all take for granted seem like they will be marathons for her. Georgia has a great team and we are blessed with many resources, but we are also constantly reminded that there is no amount of money or love that can “fix” the struggles she faces. For the most part Georgia doesn’t seem to be in frequent pain, but her discomfort is evident in a lot of ways and it’s hard to know how to help her. As an example, Georgia’s spasticity and muscle tone issues seem to cause her discomfort periodically during the day and night - I imagine she frequently feels things like restless legs or muscle spasms. She receives a prescribed medication three times a day for muscle relaxation as well as a natural CBD oil that we give her twice a day that’s commonly to given to children with seizures or neuropathy.
In October, Georgia Grace got a spot in an intensive technology-based therapy program through the robotics department at CHOA. We went two hours every day for two weeks where Georgia worked with PT and OT who utilized equipment such as electrical muscle nerve stimulation, automated arm and leg cycling machines, vibrating platforms, and a gait trainer. Two is the youngest age they see and we knew Georgia didn’t have much to build on, so we treated it as more of a preview. We didn’t see any tangible results, but Georgia tolerated everything really well and hopefully it is something we will continue to do over time. Typically kids will do a one or two week intensive program twice a year, every six months. And she will just be able to do and tolerate more as she grows!
We are currently waiting for a muscle/nerve e-stim unit for use at home during Georgia’s regular therapies, and got our own gait trainer/walker to use at home. Georgia has also been fitted for knee immobilizers and is waiting on a new pair of ankle foot orthotics. She doesn’t use/wear everything all at once, and at times it’s challenging for me to prioritize and fit everything in. There is always the sense that we could/should be doing more, so I would ask for prayers as we try to balance letting her be a baby and enjoying time as a family alongside all of the “work” we need to do with her.
In January Georgia is registered to begin hippotherapy (horse therapy) with a physical therapist nearby. This is something totally different and I’m hoping it will be something fun for Georgia and a therapy that the boys will enjoy tagging along to.
As we prepare to meet our new addition next week, memories of meeting Georgia are very fresh in my mind. Although a lot has happened and it feels like our lives have completely changed in the past two years since having her, at the same time it feels like we are moving in slow motion. Since Georgia’s progress and development has been so slow it still very much feels like she is a newborn infant. Our emotional memories of having her and understanding her body and what her life would be like seems like they were just yesterday.
The word “brave” seems to be used frequently in our house. Owen loves to remind and help Georgia to be brave and in turn tells us that he will be brave just like Georgia when he gets hurt, gets a vaccine at the doctor, etc. In the past couple years bravery has taken on a new definition for me. I know that I cannot will myself to overcome my fears and anxieties, but my Christian walk is often about letting go of my fears and having the bravery to cry out to God, ask of God, and trust God, and have confidence in my faith even when I don’t feel it in my heart. I often need reminding that God is bigger than my problems and look to the cross (undeserved grace) when I can’t wrap my head around undeserved suffering.
Jeremiah 17:7 - Blessed are those who trust in the Lord and have made the Lord their hope and confidence.
As we head into becoming a family of five, we appreciate so many of you joining us in prayer for a healthy baby, safe delivery, and an as-easy-as-possible transition. :) We will keep you updated!
Continued issues and prayer requests for Georgia Grace are hearing and vision, frequent reflux and fear of aspiration, oral motor skills, muscle tone problems and developmental delay, and of course just health and safety as we head into respiratory season. As simple as it sounds, a big prayer request is always for wisdom and discernment in both the little and large decisions.
We continue to feel somewhat in the dark on Georgia’s hearing and vision, which are obviously vital in teaching her how to communicate. We know she can hear and see, but aren’t confident in the quality. Unfortunately, Georgia’s strabismus eye alignment surgery in the spring didn’t provide the correction we were hoping for and, since we can’t get a clear picture of hearing, even through a variety of measures and tests, we along with our ENT and audiologist aren’t confident on next steps such as hearing aids since we wouldn’t know what to set them to. Since Georgia is anatomically normal in both of these areas there are a lot of corrective procedures that she is not a candidate for. If Georgia’s hearing/vision problems occur more as a result from neurological deficits or a processing issue, there’s really nothing that can be done right now. So we continue to try and help her compensate as she can, take comfort in the fact that she seems to hear and see us and her toys well enough to reach and touch or turn her head in response, and hope that time will tell us more.
As we approach Georgia’s second birthday, we are thankful for her mostly healthy second year, but we continue to be discouraged by her developmental delay. Her head control is still poor and things like being able to sit up on her own seem very, very far away and at times unlikely. Small tasks that we all take for granted seem like they will be marathons for her. Georgia has a great team and we are blessed with many resources, but we are also constantly reminded that there is no amount of money or love that can “fix” the struggles she faces. For the most part Georgia doesn’t seem to be in frequent pain, but her discomfort is evident in a lot of ways and it’s hard to know how to help her. As an example, Georgia’s spasticity and muscle tone issues seem to cause her discomfort periodically during the day and night - I imagine she frequently feels things like restless legs or muscle spasms. She receives a prescribed medication three times a day for muscle relaxation as well as a natural CBD oil that we give her twice a day that’s commonly to given to children with seizures or neuropathy.
In October, Georgia Grace got a spot in an intensive technology-based therapy program through the robotics department at CHOA. We went two hours every day for two weeks where Georgia worked with PT and OT who utilized equipment such as electrical muscle nerve stimulation, automated arm and leg cycling machines, vibrating platforms, and a gait trainer. Two is the youngest age they see and we knew Georgia didn’t have much to build on, so we treated it as more of a preview. We didn’t see any tangible results, but Georgia tolerated everything really well and hopefully it is something we will continue to do over time. Typically kids will do a one or two week intensive program twice a year, every six months. And she will just be able to do and tolerate more as she grows!
We are currently waiting for a muscle/nerve e-stim unit for use at home during Georgia’s regular therapies, and got our own gait trainer/walker to use at home. Georgia has also been fitted for knee immobilizers and is waiting on a new pair of ankle foot orthotics. She doesn’t use/wear everything all at once, and at times it’s challenging for me to prioritize and fit everything in. There is always the sense that we could/should be doing more, so I would ask for prayers as we try to balance letting her be a baby and enjoying time as a family alongside all of the “work” we need to do with her.
In January Georgia is registered to begin hippotherapy (horse therapy) with a physical therapist nearby. This is something totally different and I’m hoping it will be something fun for Georgia and a therapy that the boys will enjoy tagging along to.
As we prepare to meet our new addition next week, memories of meeting Georgia are very fresh in my mind. Although a lot has happened and it feels like our lives have completely changed in the past two years since having her, at the same time it feels like we are moving in slow motion. Since Georgia’s progress and development has been so slow it still very much feels like she is a newborn infant. Our emotional memories of having her and understanding her body and what her life would be like seems like they were just yesterday.
The word “brave” seems to be used frequently in our house. Owen loves to remind and help Georgia to be brave and in turn tells us that he will be brave just like Georgia when he gets hurt, gets a vaccine at the doctor, etc. In the past couple years bravery has taken on a new definition for me. I know that I cannot will myself to overcome my fears and anxieties, but my Christian walk is often about letting go of my fears and having the bravery to cry out to God, ask of God, and trust God, and have confidence in my faith even when I don’t feel it in my heart. I often need reminding that God is bigger than my problems and look to the cross (undeserved grace) when I can’t wrap my head around undeserved suffering.
Jeremiah 17:7 - Blessed are those who trust in the Lord and have made the Lord their hope and confidence.
As we head into becoming a family of five, we appreciate so many of you joining us in prayer for a healthy baby, safe delivery, and an as-easy-as-possible transition. :) We will keep you updated!
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