I have set-up a fundraising page for Gesina's stem cell treatment! Please feel free to share and check back here for updates. If you have any tips on traveling with a special needs 2 year old, I'm all ears!
Help Gesina Warrior Princess get Stem Cells
Saturday, August 27, 2016
Friday, August 26, 2016
It's been awhile but things are going well
Gesina is now 2 years 8 months 21 days, and yes I did have to use an age calculator to get that right. If you know me in person, you'll recall that I was absolutely convinced I was 38 years old... for TWO YEARS. It was only after miscalculating my cats age that I figured out that I missed being 37 all together :-( A lot has been going on so I'll recap by "system".
Stomach/feeding - I had to fire her GI this year and get a new one. I'm on my fourth GI but the last one flipped out on me and I just don't have time for that. Gesina was not eating and was vomiting in December right before Christmas, I called GI frantic (I rarely ask for help so if I call a doctor, I am super serious) and they ignored me for a week. Thankfully I had an appointment with the GI after that week and had gotten Gesina through with tube feeding her real baby food and sometimes mixed real food with her formula as best I could. GI flipped out, declared I may have hospitalize her immediately because she may have/get "refeeding syndrome". Hmmm, so after ignoring me you now care and are thinking I starved her? Awesome. To keep her out of the hospital, I ended up having to get her blood tests every other day NEARLY having to cancel Christmas plans. She was fine, I got her to Christmas with the family, and I got a new GI doctor. The new GI only wants to see Gesina once every 6 to 12 months instead of the every 3 months of torture I was going through. He is also able to read the growth chart for a child with quadriplegia cerebral palsy and realizes that Gesina is NOT underweight and forcing her to gain weight will only hurt my back as I carry her around. I love him; therapists and SOME other doctors on Team Gesina are not yet convinced the lag in between appointments are a good idea. My stress level has gone down so I'm good for now.
Neurology/Brain - Gesina is still seizure free, is on 1 seizure medication, and in April we did a repeat EEG to find that there is "20% improvement" in her abnormal EEGs. This is a statement from my very conservative neurologist so he and I are shocked and happy about this. I have added fish oil to Gesina's supplements and not just me but her teachers at daycare have noticed her being more "aware." Her vision is a work in progress but she has a new room decked out in everything bright contrasting colors and reds. Here is cortical visual impairment "friendly" artwork created by her friends in her daycare classroom:
She is getting better at focusing her attention when she is shown items/toys/faces that make noise or talk. She loves clapping and applause so I'm thinking she may be a football fan this fall. She LOVES her classmates at daycare and when I bring Gesina to school, her classmates yell "Gesina's here!" I wish they could stay that excited to see her forever! She babbles a bit still and seems to do so somewhat in response to others. Here's a video when she just woke up, happy and babbling.
Muscles/Body - Gesina is getting stronger in her neck and core muscles. She likes to stand with her AFOs (Ankle-Foot-Orthotics) on leaning onto an exercise ball. I can put her arms in front of her and she flings herself and lifts her head up. It's so adorable when she does this because one, she has a beautiful face (I'm not biased at all) and two, she looks around like she's never seen the world from her current view before. Her upper body is more stiff than her lower body and she gets phenol and botox injections to help with the stiffness.
Next up is a new swallow study to see if we can finally give her liquids, a meeting with the school representatives (she starts school in JANUARY), and STEM CELL THERAPY! Not covered by insurance of course, but has been shown to not hurt kids but instead helps them to varying degrees. I will take any boost I can get so stay tuned on that.
Stomach/feeding - I had to fire her GI this year and get a new one. I'm on my fourth GI but the last one flipped out on me and I just don't have time for that. Gesina was not eating and was vomiting in December right before Christmas, I called GI frantic (I rarely ask for help so if I call a doctor, I am super serious) and they ignored me for a week. Thankfully I had an appointment with the GI after that week and had gotten Gesina through with tube feeding her real baby food and sometimes mixed real food with her formula as best I could. GI flipped out, declared I may have hospitalize her immediately because she may have/get "refeeding syndrome". Hmmm, so after ignoring me you now care and are thinking I starved her? Awesome. To keep her out of the hospital, I ended up having to get her blood tests every other day NEARLY having to cancel Christmas plans. She was fine, I got her to Christmas with the family, and I got a new GI doctor. The new GI only wants to see Gesina once every 6 to 12 months instead of the every 3 months of torture I was going through. He is also able to read the growth chart for a child with quadriplegia cerebral palsy and realizes that Gesina is NOT underweight and forcing her to gain weight will only hurt my back as I carry her around. I love him; therapists and SOME other doctors on Team Gesina are not yet convinced the lag in between appointments are a good idea. My stress level has gone down so I'm good for now.
Neurology/Brain - Gesina is still seizure free, is on 1 seizure medication, and in April we did a repeat EEG to find that there is "20% improvement" in her abnormal EEGs. This is a statement from my very conservative neurologist so he and I are shocked and happy about this. I have added fish oil to Gesina's supplements and not just me but her teachers at daycare have noticed her being more "aware." Her vision is a work in progress but she has a new room decked out in everything bright contrasting colors and reds. Here is cortical visual impairment "friendly" artwork created by her friends in her daycare classroom:
She is getting better at focusing her attention when she is shown items/toys/faces that make noise or talk. She loves clapping and applause so I'm thinking she may be a football fan this fall. She LOVES her classmates at daycare and when I bring Gesina to school, her classmates yell "Gesina's here!" I wish they could stay that excited to see her forever! She babbles a bit still and seems to do so somewhat in response to others. Here's a video when she just woke up, happy and babbling.
Muscles/Body - Gesina is getting stronger in her neck and core muscles. She likes to stand with her AFOs (Ankle-Foot-Orthotics) on leaning onto an exercise ball. I can put her arms in front of her and she flings herself and lifts her head up. It's so adorable when she does this because one, she has a beautiful face (I'm not biased at all) and two, she looks around like she's never seen the world from her current view before. Her upper body is more stiff than her lower body and she gets phenol and botox injections to help with the stiffness.
Next up is a new swallow study to see if we can finally give her liquids, a meeting with the school representatives (she starts school in JANUARY), and STEM CELL THERAPY! Not covered by insurance of course, but has been shown to not hurt kids but instead helps them to varying degrees. I will take any boost I can get so stay tuned on that.
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