Help Evee Evolve
Donation protected
Meet Evee Diann Hanson. When you look at her, she is a sweet, funny, and happy 7 month old baby girl but there is something else going on in her body and we are trying to figure it all out.
Evee was born February 8, 2019 via cesarean. It was an uncomplicated delivery. Things didn't get weird until she was about 12 hours old. My husband and I were talking while eating breakfast and Evee was laying on the bed between my legs when I looked down at her and she was blue. I immediately picked her up and she was stiff as a board and obviously not breathing. I paged the nurses and started pounding on her back. The nurses came in very slowly and suctioned her nose and their response to it all was that she was a c-section baby and this happens for their first two weeks.
As the weeks go by, we start to realize this is not just because she is a c-section baby. The episodes happen all the time and completely random.
On top of her breathing issues, Evee also was diagnosed Failure to Thrive. She for some reason could not breastfeed. We sought help from multiple lactation consultants and eventually resorted to exclusively pumping so we knew exactly how much milk she was ingesting. This did not solve her feeding/weight gain issues. She continued to be below the charts and even periodically losing weight. We chalked it up to acid reflux, put her on medication, and started adding small amounts of formula to the breastmilk.
June 4 Evee was admitted to the hospital due to her recurrent breathing episodes and accompanying weight issues. We had a barium swallow, blood work, x-rays, and multiple doctors assess her. No one could figure out why this was happening so we decided to stop breastfeeding and solely formula feed so she could at least gain weight. We chose to put her on a very expensive amino based formula which is hypoallergenic and easier to digest since she does have severe acid reflux (GERD). She sees a Gastroenterologist regularly to help us determine how to handle her acid reflux, make sure she is gaining weight adequately, and keep track of her breathing episodes.
We had an Upper GI Series done to make sure she didn't have any deformities and she was tested for Cystic Fibrosis since her breathing episodes produce immense amounts of mucus. Both these tests were negative.
While all this is going on, we started to notice some peculiar things about Evee. She constantly held her arms out, could barely do tummy time, had a hard time holding her head up for extended periods of time, showed little to no interest in toys, and so much more.
We reached out to Help Me Grow and Early Intervention and they found that she has gross motor, fine motor, and cognitive delays. Evee sees Physical Therapy and has weekly visits from therapists from the programs. She will also start seeing Speech and Occupational Therapists soon but we have to figure out where she can be seen since this goes through the Early Intervention program. I might have to travel over an hour away for her to get the therapy she needs.
To help us understand why she is having these delays we took her to see a neurologist. She was diagnosed with Central Hypotonia over her entire body. This is also called "Floppy Baby Syndrome". Basically, she has a harder time doing the "simple" things that most babies can do like picking up toys, sitting, and even moving her arms. Evee also suffers from random convulsions of her extremities so she will have an EEG to see what her brainwaves look like. She will also have a head ultrasound to determine if we should do her brain MRI now or if we should wait until she is older because she will need to be sedated for that procedure.
The neurologist also thinks that her breathing episodes are being caused by whatever it is that is causing her hypotonia. Essentially, something in her brain isn't "clicking" like it should.
We have reached out for financial assistance programs for some of her testing and doctor's visits through a program called BCMH. Right now she is only covered for diagnostic. We are working on getting her signed up for treatment. She also receives state funded assistance through our Early Intervention program so her PT visits are covered and we are hoping her Speech and OT will be as well.
Your donation will help us be able to afford going back and forth to her therapy visits (as I mentioned above, we were told the closest speech therapist through Early Intervention is over and hour away), help us get to all the doctor's visits, and help cover the remainder after our insurance pays. Her neurologist isn't a BCMH provider so we are not able to use that assistance for all her doctors.
We are a family of four. Myself-Kerstain, my husband-Kyle, our four year old-Tripp, and of course our sweet Evee. We are on a single income since I stay home to take care of Evee because of all her health problems. She could have a breathing episode at any time of day or night and sometimes it isn't easy to get her over the episode, plus taking care of a baby with hypotonia isn't the easiest. They require extra attention.
Thank you for taking the time to read about our beautiful girl.
(And yes, she is named after the Pokemon Eevee)
Evee was born February 8, 2019 via cesarean. It was an uncomplicated delivery. Things didn't get weird until she was about 12 hours old. My husband and I were talking while eating breakfast and Evee was laying on the bed between my legs when I looked down at her and she was blue. I immediately picked her up and she was stiff as a board and obviously not breathing. I paged the nurses and started pounding on her back. The nurses came in very slowly and suctioned her nose and their response to it all was that she was a c-section baby and this happens for their first two weeks.
As the weeks go by, we start to realize this is not just because she is a c-section baby. The episodes happen all the time and completely random.
On top of her breathing issues, Evee also was diagnosed Failure to Thrive. She for some reason could not breastfeed. We sought help from multiple lactation consultants and eventually resorted to exclusively pumping so we knew exactly how much milk she was ingesting. This did not solve her feeding/weight gain issues. She continued to be below the charts and even periodically losing weight. We chalked it up to acid reflux, put her on medication, and started adding small amounts of formula to the breastmilk.
June 4 Evee was admitted to the hospital due to her recurrent breathing episodes and accompanying weight issues. We had a barium swallow, blood work, x-rays, and multiple doctors assess her. No one could figure out why this was happening so we decided to stop breastfeeding and solely formula feed so she could at least gain weight. We chose to put her on a very expensive amino based formula which is hypoallergenic and easier to digest since she does have severe acid reflux (GERD). She sees a Gastroenterologist regularly to help us determine how to handle her acid reflux, make sure she is gaining weight adequately, and keep track of her breathing episodes.
We had an Upper GI Series done to make sure she didn't have any deformities and she was tested for Cystic Fibrosis since her breathing episodes produce immense amounts of mucus. Both these tests were negative.
While all this is going on, we started to notice some peculiar things about Evee. She constantly held her arms out, could barely do tummy time, had a hard time holding her head up for extended periods of time, showed little to no interest in toys, and so much more.
We reached out to Help Me Grow and Early Intervention and they found that she has gross motor, fine motor, and cognitive delays. Evee sees Physical Therapy and has weekly visits from therapists from the programs. She will also start seeing Speech and Occupational Therapists soon but we have to figure out where she can be seen since this goes through the Early Intervention program. I might have to travel over an hour away for her to get the therapy she needs.
To help us understand why she is having these delays we took her to see a neurologist. She was diagnosed with Central Hypotonia over her entire body. This is also called "Floppy Baby Syndrome". Basically, she has a harder time doing the "simple" things that most babies can do like picking up toys, sitting, and even moving her arms. Evee also suffers from random convulsions of her extremities so she will have an EEG to see what her brainwaves look like. She will also have a head ultrasound to determine if we should do her brain MRI now or if we should wait until she is older because she will need to be sedated for that procedure.
The neurologist also thinks that her breathing episodes are being caused by whatever it is that is causing her hypotonia. Essentially, something in her brain isn't "clicking" like it should.
We have reached out for financial assistance programs for some of her testing and doctor's visits through a program called BCMH. Right now she is only covered for diagnostic. We are working on getting her signed up for treatment. She also receives state funded assistance through our Early Intervention program so her PT visits are covered and we are hoping her Speech and OT will be as well.
Your donation will help us be able to afford going back and forth to her therapy visits (as I mentioned above, we were told the closest speech therapist through Early Intervention is over and hour away), help us get to all the doctor's visits, and help cover the remainder after our insurance pays. Her neurologist isn't a BCMH provider so we are not able to use that assistance for all her doctors.
We are a family of four. Myself-Kerstain, my husband-Kyle, our four year old-Tripp, and of course our sweet Evee. We are on a single income since I stay home to take care of Evee because of all her health problems. She could have a breathing episode at any time of day or night and sometimes it isn't easy to get her over the episode, plus taking care of a baby with hypotonia isn't the easiest. They require extra attention.
Thank you for taking the time to read about our beautiful girl.
(And yes, she is named after the Pokemon Eevee)
Organizer
Kerstain Hanson
Organizer
Geneva, OH
