My poor girl has experienced pain this year. The year has included teething where she has felt EVERY SINGLE TOOTH come in, numerous hospital stays with difficulty breathing as every cold threatens to get stuck in her lungs, plus, weaning off these meds is more difficult than you can imagine because she gets most of the withdrawal symptoms. With all that said, she has been "waking up" as she comes off these sedating seizure meds and she SMILES a lot. She hasn't laughed since her first time last year but if she isn't sick or going through withdrawal, she is smiling and happy. She had strings of good happy days where she babbles, is great with her therapy, and is fun to be around. When things go bad, she won't do therapy and demands to be held at all times. I get hungry stuck to my chair cuddling her, but I'm so thankful that she's here and is a cuddler! Here's her year 2 Birthday montage, enjoy!
Tuesday, December 8, 2015
Gesina is 2 years old!
She was predicted to not get this far by at least two doctors... silly doctors. Gesina has been seizure free since February. Don't get me wrong, she has moments of "odd" neurological behaviors, but nothing I or her neurologist would call a seizure. She is no longer on Phenobarbital and is one month away from being free of Clonazepam! This scares me as just saying this all out loud, seems like I'll jinx it but there it is. But she is keeping it together and will be down to only 1 seizure med, gulp.
My poor girl has experienced pain this year. The year has included teething where she has felt EVERY SINGLE TOOTH come in, numerous hospital stays with difficulty breathing as every cold threatens to get stuck in her lungs, plus, weaning off these meds is more difficult than you can imagine because she gets most of the withdrawal symptoms. With all that said, she has been "waking up" as she comes off these sedating seizure meds and she SMILES a lot. She hasn't laughed since her first time last year but if she isn't sick or going through withdrawal, she is smiling and happy. She had strings of good happy days where she babbles, is great with her therapy, and is fun to be around. When things go bad, she won't do therapy and demands to be held at all times. I get hungry stuck to my chair cuddling her, but I'm so thankful that she's here and is a cuddler! Here's her year 2 Birthday montage, enjoy!
My poor girl has experienced pain this year. The year has included teething where she has felt EVERY SINGLE TOOTH come in, numerous hospital stays with difficulty breathing as every cold threatens to get stuck in her lungs, plus, weaning off these meds is more difficult than you can imagine because she gets most of the withdrawal symptoms. With all that said, she has been "waking up" as she comes off these sedating seizure meds and she SMILES a lot. She hasn't laughed since her first time last year but if she isn't sick or going through withdrawal, she is smiling and happy. She had strings of good happy days where she babbles, is great with her therapy, and is fun to be around. When things go bad, she won't do therapy and demands to be held at all times. I get hungry stuck to my chair cuddling her, but I'm so thankful that she's here and is a cuddler! Here's her year 2 Birthday montage, enjoy!
Monday, October 19, 2015
The invisible elephant in the room
I've begun to notice that when I'm out and about with Gesina, people are starting to realize she's different. Often I get the "awww, she must be sleepy" comments when people try to engage Gesina in conversation and it seems as if she is ignoring them. Or when people see me carrying Gesina who is obviously not "helping" by latching her legs around my waist and has her face buried in my shoulder. Gesina has water therapy every week at the Y on Friday mornings. She loves water therapy! While she's in the pool there is a water aerobics class for those with the aches and pains that come with age. Gesina loves to listen to them chatter and they tend to enjoy seeing her as well. Last week one of the ladies came to me out in the hall (the viewing area so I can see Gesina's progress) and she said watching Gesina just breaks her heart. She asked what was her diagnosis so I filled her in. She was so sad for us! I let her know that it's okay, mom's like me are fine. We think our kids are perfect just the way they are and really couldn't love them more than we already do. She seemed dubious but somewhat comforted by that but it made me think.
When Gesina and I go about our business, those who see us see the "big elephant" in the room. Gesina is different. She defies what they anticipate from a child her age. She isn't following the script or norms society has laid out for her. This is unsettling so people tend to seek a reason (sleepy? and as she get's older, just what is wrong with this kid?) as to why this child is different. When they realize they don't have enough information, they may ask, make assumptions, or worse, panic and quickly look away. Gesina's differences is the elephant in the room for them. The thing is, her difference isn't an elephant in the room for me (or Gesina so far). We go through our day modifying how we do things, taking pleasure and joy out of what we can and living in the moment with no thought to what the future holds. So when we cross-paths with someone new, our mind is on regular everyday minutia when their mind may be obsessing about making sense of Gesina's differences.
So what does all this mean? Well, my pre-Gesina self was overwhelmed with anxiety when I came across an individual with a disability. What do I do, what do I say, where do I LOOK, how do I make sense of the elephant in the room!! Now, on the other side of that experience or at least as a mom pushing the wheelchair, I can finally give some insight. We don't see the elephant. We've accepted the diagnosis, the treatment, the outcomes, the prognosis. We've moved on and are just trying to enjoy the day. So there is no need to address the elephant in the room, it's invisible to us. Instead, react as you would to anyone that doesn't have a huge elephant sitting in front of them. Comment on the weather, a smile, a neat shirt; heck, a cool wheelchair. You are not belittling an individual with a disability by looking past their disability. Gesina and I are bombarded with information on her condition at every doctor's appointment (every three months we revisit 3 specialist doctors and her pediatrician) and every therapy session (4 sessions a week with 3 or 4 different therapists). Any given stranger isn't going to tell us anything we don't already know by addressing the elephant. Also, while I am an educator and am happy to raise awareness, I'm also just a mom who want to be sure her daughter is having a good time. So when we are just out and about, feel free to connect with us by ignoring the elephant. It's okay to look Gesina in the eye and smile. She may not react the way you expect but at least by treating her like a nearly 2 year old, she'll have ample opportunity to learn how to react like a 2 year old. I once heard a doctor say that if you treat your child like she's blind, she'll be blind. So I intend to treat Gesina like she is a 2 year old, so she can just be a 2 year old. And with that, I leave you with her Halloween outfit. This silly girl LIKES tutus!
When Gesina and I go about our business, those who see us see the "big elephant" in the room. Gesina is different. She defies what they anticipate from a child her age. She isn't following the script or norms society has laid out for her. This is unsettling so people tend to seek a reason (sleepy? and as she get's older, just what is wrong with this kid?) as to why this child is different. When they realize they don't have enough information, they may ask, make assumptions, or worse, panic and quickly look away. Gesina's differences is the elephant in the room for them. The thing is, her difference isn't an elephant in the room for me (or Gesina so far). We go through our day modifying how we do things, taking pleasure and joy out of what we can and living in the moment with no thought to what the future holds. So when we cross-paths with someone new, our mind is on regular everyday minutia when their mind may be obsessing about making sense of Gesina's differences.
So what does all this mean? Well, my pre-Gesina self was overwhelmed with anxiety when I came across an individual with a disability. What do I do, what do I say, where do I LOOK, how do I make sense of the elephant in the room!! Now, on the other side of that experience or at least as a mom pushing the wheelchair, I can finally give some insight. We don't see the elephant. We've accepted the diagnosis, the treatment, the outcomes, the prognosis. We've moved on and are just trying to enjoy the day. So there is no need to address the elephant in the room, it's invisible to us. Instead, react as you would to anyone that doesn't have a huge elephant sitting in front of them. Comment on the weather, a smile, a neat shirt; heck, a cool wheelchair. You are not belittling an individual with a disability by looking past their disability. Gesina and I are bombarded with information on her condition at every doctor's appointment (every three months we revisit 3 specialist doctors and her pediatrician) and every therapy session (4 sessions a week with 3 or 4 different therapists). Any given stranger isn't going to tell us anything we don't already know by addressing the elephant. Also, while I am an educator and am happy to raise awareness, I'm also just a mom who want to be sure her daughter is having a good time. So when we are just out and about, feel free to connect with us by ignoring the elephant. It's okay to look Gesina in the eye and smile. She may not react the way you expect but at least by treating her like a nearly 2 year old, she'll have ample opportunity to learn how to react like a 2 year old. I once heard a doctor say that if you treat your child like she's blind, she'll be blind. So I intend to treat Gesina like she is a 2 year old, so she can just be a 2 year old. And with that, I leave you with her Halloween outfit. This silly girl LIKES tutus!
Tuesday, September 1, 2015
No more Pheno (barbital, that is)
So I just requested and got permission to stop giving Gesina phenobarbital! With her dose at 1/2 pill at night, she was not taking enough to be at a therapeutic level and it's been nearly 2 months since her last decrease. No seizures but of course, a few moments that make you go "hmmm". When she's sleepy she does this odd eye open/close thing every now and then. I've only seen it about 3 times and it corrects itself as she either goes to sleep or wakes up. But either way, I don't see them as seizure activity and in a month I see her neurologist and I'll let him know. I'm hoping he'll want to repeat her EEG so we can see if they have changed at all. Her zonisimide is supposed to "normalize" her abnormal EEGs so I'm curious to see if that has happened. She started that med nearly a year ago so I sure hope so! Here she is as she stops to smell the wildflowers at daycare.
Gesina is also loving her water therapy. She is starting to kick the side of the pool with her feet and me or her therapist (whoever is with her in the pool at the time) exaggerate the effect that has on her body. Her PT says Gesina is very talkative in the water and loves to hear the chatter of the ladies doing water aerobics with her in the pool. Unfortunately for me, the recplex pool I take her to is not as warm as the therapy pool at the YMCA. This means within about 10 minutes in the water she is shivering and her little lips are blue! The other unfortunate thing is the recplex pool is child-oriented with slides and all kinds of waterpark features. For us this means that after being in the pool about 20 minutes, inevitably someone's little bundle of joy will $h!+ in the pool. I'm not saying that will not be Gesina some day, but note to self, swim diapers are always a good idea! Here's Gesina after the pool when she won't stop smiling; not even for me to clean and dress her!
More good news about the water therapy is that I've finally gotten one-on-one time with her PT. In the past we never crossed paths but now I can finally talk to her about what Gesina can do. Gesina is most active at night and has been known to, for months now, stand with my assistance. She stands by resting her arms and head on my shoulder. PT sees Gesina in the morning when she's knocked out from her Clonazapam and isn't capable of nearly as much. Well I've been able to talk to PT and show her some of the things I do with her. I've even gotten her to see Gesina needs a stander! Here she is in her new stander.
Just look at that head control! She's been so strong lately and good at keeping her head up more. I'm hoping she continues this string of successes because it is so FUN to watch! She's amazing, and I love her!
Gesina is also loving her water therapy. She is starting to kick the side of the pool with her feet and me or her therapist (whoever is with her in the pool at the time) exaggerate the effect that has on her body. Her PT says Gesina is very talkative in the water and loves to hear the chatter of the ladies doing water aerobics with her in the pool. Unfortunately for me, the recplex pool I take her to is not as warm as the therapy pool at the YMCA. This means within about 10 minutes in the water she is shivering and her little lips are blue! The other unfortunate thing is the recplex pool is child-oriented with slides and all kinds of waterpark features. For us this means that after being in the pool about 20 minutes, inevitably someone's little bundle of joy will $h!+ in the pool. I'm not saying that will not be Gesina some day, but note to self, swim diapers are always a good idea! Here's Gesina after the pool when she won't stop smiling; not even for me to clean and dress her!
More good news about the water therapy is that I've finally gotten one-on-one time with her PT. In the past we never crossed paths but now I can finally talk to her about what Gesina can do. Gesina is most active at night and has been known to, for months now, stand with my assistance. She stands by resting her arms and head on my shoulder. PT sees Gesina in the morning when she's knocked out from her Clonazapam and isn't capable of nearly as much. Well I've been able to talk to PT and show her some of the things I do with her. I've even gotten her to see Gesina needs a stander! Here she is in her new stander.
Just look at that head control! She's been so strong lately and good at keeping her head up more. I'm hoping she continues this string of successes because it is so FUN to watch! She's amazing, and I love her!
Friday, July 24, 2015
Summer!
Another long time no post but we have been thoroughly enjoying summer! I think the more stable Gesina's situation and my ability to function as her mother is, the less I blog. It's when things become really crazy and dramatic that I need the blog to "get it out". So the less you see from me, the better ;-) But for those out there following along, Gesina has taken the next step on weaning off of phenobarb and this time, no withdrawal symptoms! She only takes a half pill at night and we already know that she is now below the "therapeutic level". No more pheno fog and it shows! Gesina smiles in response to her environment!!! And she smiles a lot which so warms my heart. I was known as a smiley kid so to see Gesina repeat that is amazing... I have a smiley kid!!! Sorry for the exclamation points but to see her smile in response to Adrian, me or her many friends from Team Gesina just takes my breath away. I will admit that as I watched her in water therapy this morning cracking her smirky little smile at her physical therapist when she pushed with her feet off from the side of the pool I GOT MISTY EYED! I think I used to feel this amount of love for my first cat Yoshi once or twice but with Gesina, it's a million times stronger, comes out of nowhere and can take your breath away. For reference, this is Yoshi and yes, she was a cuddler:
You would think I had a pic of Gesina smiling but... ah... I'm too busy getting misty eyed to grab my phone. I'll work on getting one but in the mean time, here is Gesina getting ready to go outside at daycare. She is the coolest kid I know!
We are still pretty much seizure free (one minor episode when she was going to sleep one night but Neuro and I are not convinced it was a seizure so we are "keeping an eye out" in case it happens again). Gesina's wheelchair is taking forever but we are working on it. Next up is getting her in a stander because she has strong legs and does like to stand if I hold her head up. She loves going to the pool so I do that as much as I can. And vision-wise, she is making strides. Adrian ALMOST got her to laugh last night by swatting her light up balloon which startled her and then amused her. She also responded to him tickling her! She has ignored all tickling previously but is now starting to notice it. It's a fun time as she starts to notice and respond to her environment more. Here she is LOOKING at her toy.
I'll work on getting some more smiles in the photos for next time. Yay summer!
You would think I had a pic of Gesina smiling but... ah... I'm too busy getting misty eyed to grab my phone. I'll work on getting one but in the mean time, here is Gesina getting ready to go outside at daycare. She is the coolest kid I know!
We are still pretty much seizure free (one minor episode when she was going to sleep one night but Neuro and I are not convinced it was a seizure so we are "keeping an eye out" in case it happens again). Gesina's wheelchair is taking forever but we are working on it. Next up is getting her in a stander because she has strong legs and does like to stand if I hold her head up. She loves going to the pool so I do that as much as I can. And vision-wise, she is making strides. Adrian ALMOST got her to laugh last night by swatting her light up balloon which startled her and then amused her. She also responded to him tickling her! She has ignored all tickling previously but is now starting to notice it. It's a fun time as she starts to notice and respond to her environment more. Here she is LOOKING at her toy.
I'll work on getting some more smiles in the photos for next time. Yay summer!
Wednesday, May 27, 2015
Pneumonia
It's been a long time with no new posts but lots have been going on, including another hospitalization, still seizure free, and now, pneumonia.
The good - We are slowly weaning her off of phenobarbital which is one of her 3 seizure meds. It also makes her really sleepy so I'm hoping to see her more alert as those levels in her blood go down. So far, she hasn't had any seizures as a result of this and it's been 4 weeks at the reduced dose (33% less med than before). She had a fever spike and a few odd looking up moments during that spike, but not enough for me to call it an all out seizure AND if it were a seizure, it would be a febrile seizure and not likely caused by phenobarb. She did have a few withdrawal symptoms at first (moody, muscle twitching, and the crying, OMG, the crying!) but we worked through it. I'm pretty hopeful that we can ditch this med and move on with our lives. I don't want to jinx it, but we are 5 months seizure free!!! Here's Gesina at her papa's softball game.
The bad - Gesina had the breathing issues again which put us back into the hospital for a few days. She now has to have breathing treatments (5 a day and she doesn't like it) for the remainder of the spring "asthma" season. You have to be 2 years old to be considered asthmatic but Gesina is well on her way to that diagnosis. I'm not sure how to interpret that as she has spastic quad cerebral palsy, she won't be a terribly active kid. So how would asthma be triggered? But I'm sure some doctor will explain it all to me when we get there. She also got a cold (with a fever that spiked to 104 F in 10 minutes) that turned into pneumonia and she is currently fighting that. She is on 8 medications and alternating acetaminophen/Midol for fever or teething pain. Traditionally, I've always been a minimalist with medicine. I don't take it unless I have to and I get off of it as soon as possible. But with Gesina, well that's not a philosophy I can afford to take. When Gesina is sick, she demands to be held 24/7. I know people THINK they know what that means, but you really have no idea. If I set her down to get her meds, she screams. I can't get food for me (I eat ensure to avoid putting her down), she eats pediasure via tube because she is too uncomfortable to eat solids right now. I LOVE the cuddles, but also not-so-much love it... I had to buy a baby carrier so I can walk and use my arms because it has been a really long 2 weeks. She is getting better but these sick days come out of nowhere and pretty much demolish any plans I may have for the day/days ahead. Here she is, exhausted after a day of crying:
The "ugly" - I was so excited to have Gesina try chocolate chip cookies, here she is with her first bite!
She didn't like it... I'm left shaking my head wondering how, exactly, she could be my child. More cookies for me I guess. And here she is recovering from pneumonia. She would cry and cry and not go to sleep... until I went to feed her. Suddenly, she "fell" asleep. She is so sneaky!
Love this girl to pieces!!
The good - We are slowly weaning her off of phenobarbital which is one of her 3 seizure meds. It also makes her really sleepy so I'm hoping to see her more alert as those levels in her blood go down. So far, she hasn't had any seizures as a result of this and it's been 4 weeks at the reduced dose (33% less med than before). She had a fever spike and a few odd looking up moments during that spike, but not enough for me to call it an all out seizure AND if it were a seizure, it would be a febrile seizure and not likely caused by phenobarb. She did have a few withdrawal symptoms at first (moody, muscle twitching, and the crying, OMG, the crying!) but we worked through it. I'm pretty hopeful that we can ditch this med and move on with our lives. I don't want to jinx it, but we are 5 months seizure free!!! Here's Gesina at her papa's softball game.
The bad - Gesina had the breathing issues again which put us back into the hospital for a few days. She now has to have breathing treatments (5 a day and she doesn't like it) for the remainder of the spring "asthma" season. You have to be 2 years old to be considered asthmatic but Gesina is well on her way to that diagnosis. I'm not sure how to interpret that as she has spastic quad cerebral palsy, she won't be a terribly active kid. So how would asthma be triggered? But I'm sure some doctor will explain it all to me when we get there. She also got a cold (with a fever that spiked to 104 F in 10 minutes) that turned into pneumonia and she is currently fighting that. She is on 8 medications and alternating acetaminophen/Midol for fever or teething pain. Traditionally, I've always been a minimalist with medicine. I don't take it unless I have to and I get off of it as soon as possible. But with Gesina, well that's not a philosophy I can afford to take. When Gesina is sick, she demands to be held 24/7. I know people THINK they know what that means, but you really have no idea. If I set her down to get her meds, she screams. I can't get food for me (I eat ensure to avoid putting her down), she eats pediasure via tube because she is too uncomfortable to eat solids right now. I LOVE the cuddles, but also not-so-much love it... I had to buy a baby carrier so I can walk and use my arms because it has been a really long 2 weeks. She is getting better but these sick days come out of nowhere and pretty much demolish any plans I may have for the day/days ahead. Here she is, exhausted after a day of crying:
The "ugly" - I was so excited to have Gesina try chocolate chip cookies, here she is with her first bite!
She didn't like it... I'm left shaking my head wondering how, exactly, she could be my child. More cookies for me I guess. And here she is recovering from pneumonia. She would cry and cry and not go to sleep... until I went to feed her. Suddenly, she "fell" asleep. She is so sneaky!
Tuesday, April 7, 2015
Holidays at Children's of Wisconsin Hospital
So we've spent our 6th holiday in the hospital and our second Easter. To be fair, I'm pretty sure she was released from the hospital on her first Easter but regardless, Gesina will grow up thinking holidays mean IV's, nurses, and various other medical procedures if we keep this up!
A month ago Gesina was admitted to the hospital for shallow, rapid breathing. After all the breathing treatments, she just "got better" overnight. On Saturday, she started the shallow breathing again. Because she wasn't magically getting better and in fact, seemed to be getting worse, I had to bring her in. I haven't seen the ER act so quickly at my small time hospital! Of course, we got transferred to Children's of Wisconsin (CW) via ambulance but Gesina was in good spirits. Here she is with, as Joe Mazzola said, the cutest ventilator ever!
She is getting enough oxygen now, her heartbeat has gone back down to near normal, but her breathing is still a bit rapid for her. She is going home today (Tuesday) but we get to bring home a baby inhaler. She is now considered at risk for asthma because of her strong reactions to respiratory viruses. I'm hoping she can dodge another diagnosis but as a child with quad CP, I don't THINK I'll need to worry about her overexerting herself physically... but I could be wrong. That is a question for her Physiatrist.
We've also been trying out a wheelchair/stroller combo. It's got bells and whistles but needs to be to support her head and trunk. Here she is demonstrating how no one controls babies head, not even the "best" wheelchairs!
Of course, this exact wheelchair costs $9,000... yeah, as much as a decent used car :-( We are not at all confident that her private and/or Medicaid insurance will cover it. We are going to work the argument that this particular chair will last her up to 7 years (!!!) which is much better than the expected 2-3 years other wheelchairs last but I'm not confident. If only she could gain head and neck control she wouldn't need such an involved design. Insurance companies tend to argue that at her age, why can't she just use a regular stroller? Uh... because her little body literally collapses. Her trunk forms a 'C' and her head rests on her chest. This happens in her new car seat as well so I'm trying to get her a special needs one of those too. Sadly, this is just the beginning of my long future of fighting with insurance companies to get my baby the tools and products she needs to live a life that approaches "normal". Blah.
Other than these challenges, Gesina has been doing so well! Seizure free for 3 months!!! She sees the neurologist at the end of the month and if she makes it seizure free by then, we will discuss slowly weaning her off of the Phenobarbital (one of her 3 seizure meds). The Pheno makes her sleepy and having her more alert during the day would hopefully be a benefit for her development. She has also been using her hands more. Her upper body, compared to her legs, was more effected by her brain injury. So it's a huge deal that she has "found" her hands in the sense that she now can more accurately get them into her mouth. I'm optimistic that this means she may be able to walk if her legs aren't as affected. We'll see and in the meantime, here's hoping! Here's the most recent pic of her before the hospital trip. She awesome, inside and out!
A month ago Gesina was admitted to the hospital for shallow, rapid breathing. After all the breathing treatments, she just "got better" overnight. On Saturday, she started the shallow breathing again. Because she wasn't magically getting better and in fact, seemed to be getting worse, I had to bring her in. I haven't seen the ER act so quickly at my small time hospital! Of course, we got transferred to Children's of Wisconsin (CW) via ambulance but Gesina was in good spirits. Here she is with, as Joe Mazzola said, the cutest ventilator ever!
She is getting enough oxygen now, her heartbeat has gone back down to near normal, but her breathing is still a bit rapid for her. She is going home today (Tuesday) but we get to bring home a baby inhaler. She is now considered at risk for asthma because of her strong reactions to respiratory viruses. I'm hoping she can dodge another diagnosis but as a child with quad CP, I don't THINK I'll need to worry about her overexerting herself physically... but I could be wrong. That is a question for her Physiatrist.
We've also been trying out a wheelchair/stroller combo. It's got bells and whistles but needs to be to support her head and trunk. Here she is demonstrating how no one controls babies head, not even the "best" wheelchairs!
Of course, this exact wheelchair costs $9,000... yeah, as much as a decent used car :-( We are not at all confident that her private and/or Medicaid insurance will cover it. We are going to work the argument that this particular chair will last her up to 7 years (!!!) which is much better than the expected 2-3 years other wheelchairs last but I'm not confident. If only she could gain head and neck control she wouldn't need such an involved design. Insurance companies tend to argue that at her age, why can't she just use a regular stroller? Uh... because her little body literally collapses. Her trunk forms a 'C' and her head rests on her chest. This happens in her new car seat as well so I'm trying to get her a special needs one of those too. Sadly, this is just the beginning of my long future of fighting with insurance companies to get my baby the tools and products she needs to live a life that approaches "normal". Blah.
Other than these challenges, Gesina has been doing so well! Seizure free for 3 months!!! She sees the neurologist at the end of the month and if she makes it seizure free by then, we will discuss slowly weaning her off of the Phenobarbital (one of her 3 seizure meds). The Pheno makes her sleepy and having her more alert during the day would hopefully be a benefit for her development. She has also been using her hands more. Her upper body, compared to her legs, was more effected by her brain injury. So it's a huge deal that she has "found" her hands in the sense that she now can more accurately get them into her mouth. I'm optimistic that this means she may be able to walk if her legs aren't as affected. We'll see and in the meantime, here's hoping! Here's the most recent pic of her before the hospital trip. She awesome, inside and out!
Thursday, February 26, 2015
Secret of a special needs mom
Now that Gesina is getting older and babies her age are gaining more skills, the gap between Gesina and her peers is widening. This means people now look at me a little differently when I'm out and about with my girl. This is going to get much worse as she no longer fits in her infant car seat. Why does that matter? Because now when we go to the grocery store or Target, she has no where to sit. She doesn't have the head or trunk control to sit in the cart. You know what the only solution is? I get to bring Gesina into the store in her wheelchair/stroller combo. Picture me coming at you down the aisle while I push my 15 month old in a wheelchair/stroller and pull a cart. Good thing we both have a flair for the dramatic because we are going to get lots of attention.
But you know what my secret is? That I love my child more than most moms love their child. Gesina is my inspiration, my hero, my survivor and if I end up demonstrating half the strength she has in the last year, then I will have lived a full life. When people find out about Gesina, one reaction is they apologize to me and offer pity about the circumstances of her birth. What they don't realize is that I don't need their pity. I'm the luckiest mom out there because I gave birth to my hero. I pity those who haven't had to fight for their child as much as I have in her 15 months of life. All this fighting for her, all the hazing of 37 doctors appointments in one year, has left me loving this child more than anything or anyone on earth. When Gesina farts and startles herself, I couldn't laugh harder. When she opens her mouth with enthusiasm because she loves banana oatmeal I couldn't be more proud. And when she sends one of her slow smiles towards her papa just because she finds his voice funny, my heart couldn't explode with love any more than it just has. Gesina doesn't have to run faster than other kids or use more words than kids her age for me to be proud of her or love her more. I love her just for her spunk and her audacity to be alive when many have told me should wouldn't make it. Anything she does from here on out is just icing on the cake.
So when you see a mom with a special needs kid, don't assume she is wallowing in self-pity. Look at the moms eyes and you may see that she is just like me. She may have already realized that she too has a secret, that her child is the coolest person she knows and that she wouldn't change a thing about him/her. Gesina may have a laundry list of health conditions that place her in the disabled category, but she is so much more than that. For those of you lucky enough to have met her, she is extremely dramatic, sends many sarcastic messages with her eyes, loves getting hugs and has continuously chapped cheeks from getting them kissed, likes to play "baby fingers" on her iPad with Rufus the cat, and thinks her daddy is the funniest man alive. Just imagine how much more personality she is going to share with us as she gets older!
Monday, February 2, 2015
Long time, no post!
Gesina's one year anniversary from being discharged from the NICU has come and gone (January 27th). To mark the day we did exactly what I said I wouldn't do after her nightmarish Halloween... She had doctors appointments all day. The day started with her vomiting her whole feeding in her carseat. After frantically hosing her and the car seat down, off we went to Milwaukee to see her Physiatrist (Cerebral Palsy doctor). Her CP doctor and therapists have decided it's time to start giving Gesina botox injections... yep, you read that correctly. She had botox injected into both biceps and her hamstrings. The theory behind it is here. I helped hold her down but the needle was pretty thin so she didn't completely lose it. Next, I whisked her off to get her PEG tube switched to a g-tube "button". I had read that this was a rather quick procedure so I wasn't too worried that Gesina hadn't eaten yet and I didn't want to feed her and THEN have the hole in her stomach leak while we changed the button. But alas, the training session lasted about an hour and a half. I kept jumping ahead of the nurse doing the training and she kept slowing me down. After the training, when she found out I was a professor, she finally realized why I kept jumping ahead. She had a script and a set pace and she was going to keep to it! Finally after the training, it was time to get Gesina's PEG tube out... they essentially "rip" it out! Imagine pulling a grape with a tube attached through a whole in your stomach the width of a straw. Boy did she scream! She was essentially inconsolable for about an hour afterwards. We went to radiology to ensure the placement is correct and headed home.
At home I rushed to give her acetaminophen, tube feed her and attempted to get her to nap... then she vomited up her formula. By the end of the day, she had vomited up four formula feedings. We are currently on a solids only diet as she can't keep liquids down but she has been a champ with eating by spoon. Regardless of the pain and suffering she experienced on her anniversary day, she was still smiley and in a pretty good mood.
Since then, Gesina is doing well. She had an ear infection and a cough that won't go away. The cough is what makes her vomit liquids so we really have kept to an all solids diet. She is doing so well that I'm just going with it. Even now, nearly a week later, I'll try to give her a slow overnight feeding and she'll vomit it half the time. Guess we only need her tube right now for medicine!
Regarding the botox, Gesina seems to have more head and neck control. I didn't expect this but it is nice! It's not like she's ready to sit in a cart at the grocery store or anything, but it is an improvement. She also tolerated tummy time last night for 45 minutes! I've tried to "show her" how to crawl by helping her coordinate her movements and taking some of the weight for her and I think that motivated her for a while. She even smiled once while on her tummy! The effects of the botox last about 3 months then they inject her again. I'm not sure what she can accomplish while on the botox but it has to be better than what she would accomplish without it.
Her next appointment is with Neurology. We haven't seen seizure activity in over a month so I'm hoping we can continue our lucky streak. Gesina has been babbling a little more and I THINK she may be starting to babble in response to a person talking to her. I may be fooling myself but I'm hopeful. So in all, I still cope best when I expect the worst and hope for the best. This way, I have the opportunity to be pleasantly surprised every now and then :-)
At home I rushed to give her acetaminophen, tube feed her and attempted to get her to nap... then she vomited up her formula. By the end of the day, she had vomited up four formula feedings. We are currently on a solids only diet as she can't keep liquids down but she has been a champ with eating by spoon. Regardless of the pain and suffering she experienced on her anniversary day, she was still smiley and in a pretty good mood.
Since then, Gesina is doing well. She had an ear infection and a cough that won't go away. The cough is what makes her vomit liquids so we really have kept to an all solids diet. She is doing so well that I'm just going with it. Even now, nearly a week later, I'll try to give her a slow overnight feeding and she'll vomit it half the time. Guess we only need her tube right now for medicine!
Regarding the botox, Gesina seems to have more head and neck control. I didn't expect this but it is nice! It's not like she's ready to sit in a cart at the grocery store or anything, but it is an improvement. She also tolerated tummy time last night for 45 minutes! I've tried to "show her" how to crawl by helping her coordinate her movements and taking some of the weight for her and I think that motivated her for a while. She even smiled once while on her tummy! The effects of the botox last about 3 months then they inject her again. I'm not sure what she can accomplish while on the botox but it has to be better than what she would accomplish without it.
Her next appointment is with Neurology. We haven't seen seizure activity in over a month so I'm hoping we can continue our lucky streak. Gesina has been babbling a little more and I THINK she may be starting to babble in response to a person talking to her. I may be fooling myself but I'm hopeful. So in all, I still cope best when I expect the worst and hope for the best. This way, I have the opportunity to be pleasantly surprised every now and then :-)
Monday, January 12, 2015
The Holidays!
We've had such a relaxing and wonderful holiday that I haven't had the time to blog :-) Christmas morning was very emotional for me and my mom and dad got to laugh at me as I couldn't stop crying tears of joy/relief/pure happiness. Having Gesina home on that morning surrounded by family who loved her... was just too much awesomeness for me to contain! She was in an amazing mood as well. Gesina smiled, laughed, and enjoyed snuggles all day long. All the horrible Christmas's I've had in the past were erased by the awesome Christmas of 2014.
Gesina got a toy rattle that has really made a difference for her. Her $20 rattle is the first toy she will hold onto for a significant period of time. All other rattles or toys she would immediately drop after I put them in her hand. This rattle lights up with minimal stimulation and she continually tries to put the rattle in her mouth (she never did this before) and has also realized that she can rattle it on purpose! This toy provides more evidence that she is able to think and is understanding that she can impact her environment. She has a variety of other sound/light toys that I put near her and she can slap at. Sometimes she successfully hits the right buttons, etc. and I cheer her on. I'm never 100% certain she knows cause and effect but I cheer her on anyway as she'll figure it out on her own schedule. Her vision is either on or off, which is common with cortical visual impairment, and lately it has been off. This usually means she is experiencing a change in a different "system". I'm not sure what that system is (maybe cognitive?) but her vision is just not working lately.
I've taken her to a speech pathologist to work on her eating solids. It was a frustrating experience. I wanted to assess Gesina's ability to eat more textures. Unfortunately for me, that is not what happened. Instead I was introduced to the philosophy of the speech pathologist, which is to go slow with using a spoon so Gesina can learn to enjoy eating. Well, that's nice and all but (1) she's American, she will find a way to enjoy eating soon enough, (2) she vomits when she gets too much formula so less feeding by spoon is not really an option, and (3) she is really good with a spoon. Why would I use the spoon LESS when she's good with it? Sure, she may learn a "better" technique but in the process may learn to just eat less in general. So, screw it. The speech folks have a philosophy I don't buy into so I'm going rogue. I'll feed her the way I think is best which is more textures, flavors, variety and less formula. Just because she has a g-tube doesn't mean that formula is all I'm going to use to feed her. She needs more calories and experiences so I'll give her that... not more formula! She's 13 months for goodness sake, why would she need MORE formula. Blah.
Next up, every single doctor all over again :-( Seems that my price for getting the holidays off from doctors appointments are more doctors appointments in January. So we will soon get an audiology test to ensure that yes, she CAN hear (the mechanics are in working order), but DOES she hear. Then GI, Physiatrist, her g-tube button put in, Neurologist, NICU developmental clinic, etc. I'm supposed to follow up with the speech pathologist in 6 weeks but I'm thinking that is not a good use of our time right now. There is no magic pill or doctor who is going to make Gesina's life dramatically better so if there is no true contribution, you're off Team Gesina... until further notice. Maybe when Gesina starts talking we'll go back but until then, my speech therapist every other week is fine with me.
Gesina got a toy rattle that has really made a difference for her. Her $20 rattle is the first toy she will hold onto for a significant period of time. All other rattles or toys she would immediately drop after I put them in her hand. This rattle lights up with minimal stimulation and she continually tries to put the rattle in her mouth (she never did this before) and has also realized that she can rattle it on purpose! This toy provides more evidence that she is able to think and is understanding that she can impact her environment. She has a variety of other sound/light toys that I put near her and she can slap at. Sometimes she successfully hits the right buttons, etc. and I cheer her on. I'm never 100% certain she knows cause and effect but I cheer her on anyway as she'll figure it out on her own schedule. Her vision is either on or off, which is common with cortical visual impairment, and lately it has been off. This usually means she is experiencing a change in a different "system". I'm not sure what that system is (maybe cognitive?) but her vision is just not working lately.
I've taken her to a speech pathologist to work on her eating solids. It was a frustrating experience. I wanted to assess Gesina's ability to eat more textures. Unfortunately for me, that is not what happened. Instead I was introduced to the philosophy of the speech pathologist, which is to go slow with using a spoon so Gesina can learn to enjoy eating. Well, that's nice and all but (1) she's American, she will find a way to enjoy eating soon enough, (2) she vomits when she gets too much formula so less feeding by spoon is not really an option, and (3) she is really good with a spoon. Why would I use the spoon LESS when she's good with it? Sure, she may learn a "better" technique but in the process may learn to just eat less in general. So, screw it. The speech folks have a philosophy I don't buy into so I'm going rogue. I'll feed her the way I think is best which is more textures, flavors, variety and less formula. Just because she has a g-tube doesn't mean that formula is all I'm going to use to feed her. She needs more calories and experiences so I'll give her that... not more formula! She's 13 months for goodness sake, why would she need MORE formula. Blah.
Next up, every single doctor all over again :-( Seems that my price for getting the holidays off from doctors appointments are more doctors appointments in January. So we will soon get an audiology test to ensure that yes, she CAN hear (the mechanics are in working order), but DOES she hear. Then GI, Physiatrist, her g-tube button put in, Neurologist, NICU developmental clinic, etc. I'm supposed to follow up with the speech pathologist in 6 weeks but I'm thinking that is not a good use of our time right now. There is no magic pill or doctor who is going to make Gesina's life dramatically better so if there is no true contribution, you're off Team Gesina... until further notice. Maybe when Gesina starts talking we'll go back but until then, my speech therapist every other week is fine with me.
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