I've had a week of truly seeing, processing and emotionally dealing with the reality of Gesina's recovery. At Gesina's new daycare, I get to really see what babies her age and younger are capable of. The emotional expression of these babies is so rich and detailed while Gesina's is... not. The abilities these babies have to play, grab objects, and generally interact with the world around them is literally shocking to this first time mom.
Today Gesina saw a teacher for the visually impaired for the first time and she does have essentially no response to visual stimuli at this time. A few weeks ago I had requested Gesina's medical records and have been pouring over them and googling medical terms ever since. It seems some of the damage in her brain due to the stroke is in her "occipital horns" which effects her vision. Also, her eye doctor, who seemed relatively useless at the time when he exclaimed her "visual structures are normal but we don't know what she sees", actually did catch a few things according to his medical report on her. Gesina has "cortical visual impairment" which is a fancy medical term for brain damage that effects her vision. The outcome of this is unknown as kids in this catch all category can gain some vision with therapy (and luck?) but will never have "normal" vision. It's all a matter of teaching the brain to "see" a few items at a time to start to rebuild visual pathways. Gesina may see some things but her brain doesn't pull it all together to make sense of what she is seeing... for the psychology folks out there, she doesn't have any "Gestalt" in her perception. Moving forward, helping her develop this ability to put pieces of information together to see a whole is a slow moving process and requires a lot of work... similar to her sensory disorganization, her stiff muscle tone, her ability to eat from a bottle, etc.
So this is a blog post where I rant and rave about the situation I can't change. Please indulge me and I promise to find the silver lining soon but just not today. I was a very lucky kid. Things always seem to come rather naturally for me. I got good grades, was in the 50th percentile for everything (even time to run a mile in elementary school) and my parents didn't even need to bother with parent-teacher conferences because I was so "vanilla". College was a fun experience for me and graduate school was an appropriate challenge. Don't get me wrong, I did work very hard for my education and in high school, for my singing awards, but I was pushing envelopes that not all kids had the opportunity to push. In all, I worked hard at some things and learned the value of hard work, but I didn't work hard at ALL things. Lots of things came naturally to me.
Fast forward to Gesina, and like all parents you just assume your child's experiences will be similar to yours and hopefully, even better! After Gesina was born I realized rather quickly that wasn't going to be the case. I live by the philosophy of "expect the worst and hope for the best" and generally, I agree with my Neurologist when he said there were times in the beginning that he and I didn't know if we would be HERE with Gesina alive and fighting so enjoy the moment as we weren't promised to get where we are today. BUT, as a mother, I die a little inside every time I see/realize/acknowledge that Gesina doesn't just get to fight to get a singing award or to get a PhD. My little Gesina the warrior princess has to fight to eat, fight to move her arms, fight to maintain a state of calm when she can't see the world around her, in other words, just getting through a day is a constant battle for my baby. While other babies at the daycare easily drink from a bottle at 6 weeks, grasp toys at 4 months, interact with the caregivers with glee, my baby is fighting HARD to just live with the constant pain of acid reflux and keeping food down. It is just not supposed to be this way.
Rationally, I know it could be worse and while Gesina fights hard today, at some point these activities will come easily to her. I also wonder what amazing lessons Gesina will learn about hard work as she is learning these lessons now, at nearly 6 months when I had to wait until high school to start dedicating myself! But emotionally I can't help but worry about how this will all work out. Why does my little girl have to suffer while others get to breeze through, including me? I'll be better tomorrow but I just need to day to process. I also realize that no matter what, I'm the luckiest woman in the world to have Gesina in my life. She is beautiful, sweet, strong, and I already know, she loves her momma.
Wednesday, May 28, 2014
Friday, May 16, 2014
While everyone else is in Hawaii...
This week my academic discipline is having its national conference in Hawaii... so this is what I've been up to while my colleagues and students live it up in paradise!
You may think she hated the peas, but really, she ate them and does a great job with the spoon. So far she has been okay with all the veggies EXCEPT green beans. She fake "fell asleep" when I tried to feed them to her one time. The next time she let me fill her mouth with them and then COUGHED them in my face. She is a "spirited" one, that girl! Today, she gets to try her first fruits. I really hope I can find something, food or toy, that she just obviously loves. I want to see Gesina experience a greater range of positive emotions.
So the hematologist did talk about Gesina having the Prothrombin gene mutation. I got tested and I have it too. This means she and I are more susceptible to blood clots so whenever a drug has the side effect of blood clots, she and I will really need to pay attention to it. We are slightly more likely to get a blood clot in our lungs or in the vein in our legs. Main things we need to do are be healthy, be sure to walk around on long flights, and be forthright about having this condition for surgeries.
The last week has been consumed with finding child care for Gesina. Not surprisingly, individuals' are afraid of her condition so I got very few applicants. Of that lot, most were older women doing it for the money. Well, I hate to tell them this but, I don't have a lot of money! I did luck out though when I happened upon a daycare that specifically caters to special needs babies and kids :-) The center does all the therapy exercises and stretches during the day so I don't have to try to catch up with it all in the times that I have her. They are also going to assign one person to Gesina to ensure she gets all the therapy, etc. that she needs. Daycare didn't seem to be an option for me because I teach at least one night class a semester. Well, I found a college student interested in being an early intervention specialist with no experience in that field yet. She will be taking Gesina on while I teach my night class. It may not be ideal to have daycare and a sitter but I have a team that all seem motivated and interested in Gesina's development so my fingers are crossed that it all works out.
Gesina was seen by the NICU development clinic and the big message was... I need to fire my Physical Therapist. My current PT doesn't think Gesina needs PT every week and wants to cut down to once every other week. Her rationale is that Gesina needs to work on being able to calm herself before PT can do her any good. Well, I've been annoyed with my PT from the first day I met her because she has erroneously determined Gesina has no gross motor skills at all and many other horrible things. We (me and my babysitter) tried to tell her that she was overreacting and that Gesina has many of the skills PT claims she doesn't. In fact, we have even videotaped Gesina doing the activities PT claimed she couldn't do and showed my current PT these videos. The OT at the NICU clinic who did Gesina's assessment says Gesina needs PT more than ever right now as she has obvious need for gross motor skill development in this critical time in her development. Gesina is at risk of developing cerebral palsy and with PT and OT, we have until she is one year old before they can determine whether or not she has CP. I have no idea if we can use therapy to avoid CP as an outcome for Gesina, but I'm going to do everything in my power to try to avoid it if I can. Having my current PT back out of weekly therapy because Gesina is fussy seems like a cop out. It's her job to be able to calm Gesina enough to help her benefit from the therapy. My mantra for Gesina's therapy is we do what is best for Gesina... not what she likes and not what is easiest for us, we do what is best for her. If that means ticking her off or dealing with a fussy baby, so be it!
Here's a poem that was shared with me that really does capture what it's like to be a mom to a special needs child. I encourage you to give it a read and after you read it, you'll understand what I mean when I say, I like "Holland"... The poem is called Welcome to Holland!
You may think she hated the peas, but really, she ate them and does a great job with the spoon. So far she has been okay with all the veggies EXCEPT green beans. She fake "fell asleep" when I tried to feed them to her one time. The next time she let me fill her mouth with them and then COUGHED them in my face. She is a "spirited" one, that girl! Today, she gets to try her first fruits. I really hope I can find something, food or toy, that she just obviously loves. I want to see Gesina experience a greater range of positive emotions.
So the hematologist did talk about Gesina having the Prothrombin gene mutation. I got tested and I have it too. This means she and I are more susceptible to blood clots so whenever a drug has the side effect of blood clots, she and I will really need to pay attention to it. We are slightly more likely to get a blood clot in our lungs or in the vein in our legs. Main things we need to do are be healthy, be sure to walk around on long flights, and be forthright about having this condition for surgeries.
The last week has been consumed with finding child care for Gesina. Not surprisingly, individuals' are afraid of her condition so I got very few applicants. Of that lot, most were older women doing it for the money. Well, I hate to tell them this but, I don't have a lot of money! I did luck out though when I happened upon a daycare that specifically caters to special needs babies and kids :-) The center does all the therapy exercises and stretches during the day so I don't have to try to catch up with it all in the times that I have her. They are also going to assign one person to Gesina to ensure she gets all the therapy, etc. that she needs. Daycare didn't seem to be an option for me because I teach at least one night class a semester. Well, I found a college student interested in being an early intervention specialist with no experience in that field yet. She will be taking Gesina on while I teach my night class. It may not be ideal to have daycare and a sitter but I have a team that all seem motivated and interested in Gesina's development so my fingers are crossed that it all works out.
Gesina was seen by the NICU development clinic and the big message was... I need to fire my Physical Therapist. My current PT doesn't think Gesina needs PT every week and wants to cut down to once every other week. Her rationale is that Gesina needs to work on being able to calm herself before PT can do her any good. Well, I've been annoyed with my PT from the first day I met her because she has erroneously determined Gesina has no gross motor skills at all and many other horrible things. We (me and my babysitter) tried to tell her that she was overreacting and that Gesina has many of the skills PT claims she doesn't. In fact, we have even videotaped Gesina doing the activities PT claimed she couldn't do and showed my current PT these videos. The OT at the NICU clinic who did Gesina's assessment says Gesina needs PT more than ever right now as she has obvious need for gross motor skill development in this critical time in her development. Gesina is at risk of developing cerebral palsy and with PT and OT, we have until she is one year old before they can determine whether or not she has CP. I have no idea if we can use therapy to avoid CP as an outcome for Gesina, but I'm going to do everything in my power to try to avoid it if I can. Having my current PT back out of weekly therapy because Gesina is fussy seems like a cop out. It's her job to be able to calm Gesina enough to help her benefit from the therapy. My mantra for Gesina's therapy is we do what is best for Gesina... not what she likes and not what is easiest for us, we do what is best for her. If that means ticking her off or dealing with a fussy baby, so be it!
Here's a poem that was shared with me that really does capture what it's like to be a mom to a special needs child. I encourage you to give it a read and after you read it, you'll understand what I mean when I say, I like "Holland"... The poem is called Welcome to Holland!
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