Please pardon the overtly flowery title of this post. It's just what I'm feeling today.
I know most moms feel this way about their babies. I certainly feel this way about my older child too.
But you know, sometimes you have one of those perfect moments and the clarity of your love sharpens and comes into focus.
Last night Sproggy and I were laying in my bed, I was scrolling through some Facebook postings, keeping an eye on the Super Bowl highlights while she laid next to me took turns babbling and taking some sips from her bottle. It was clear she really wanted my attention, to play and have fun, but knowing it was way past her bedtime, I pretty much ignored all her attempts to engage with me.
Then, slowly, the babbling slowed and her eyes started closing slowly. I purposefully avoided eye contact with her, propped on a pillow right next to mine.
After a few minutes of quiet, with just her lullabyes playing softly on my phone, I turned to check if she was asleep. Her eyelids were nearly closed but her eyes were shifted, fixed on my face, staring at me, almost as if using The Force to get my attention on her. I couldn't help but start to laugh. Then she slowly started to smile. I laughed more. She smiled more. Repeat. I said "My God, you have my heart forever."
Now, that language is NOT typical of me. I'm not poetic, I'm not flowery in my language at all. These words just came from a place in me that only my kids can tap into. They just sometimes bubble up without warning.
I'm finally coming around to the understanding that, even if she's not typical, she's still somehow perfect. I'm like that scene in Love Actually, where Rick Grimes holds up the cue cards to Keira Knightly which say "To me, you are perfect." That's how I feel about her. I mean, maybe these people who have intellectual disabilities have a much better understanding of how life is SUPPOSED to be lived. Sproglet only knows how to love. Even when her big brother is crushing her with one of his monster hugs, or shrieking in her face, she looks back at him with the most adoring smile.
And she does the same with everyone else too. No one is safe from one of her gushing squeals, which her older cousin told me make her sound like a velociraptor. She lives to connect with and make others smile. What a noble gift to be given. It's like looking at a totally pure soul, innocent, sweet and, I don't know... Close to God, I guess? She may make me believe that people are brought into our lives for a reason.
Monday, February 6, 2017
Thursday, February 2, 2017
MRI = "Miserably Ravenous Infant"
Well alright! We're finally on the other side of Sproglet's first major test- I say "major" because it's the first we've done that has required sedation under general anesthetic. We've done neuro studies that required sleep deprivation, and feeding studies that required her to skip some meals, but this MRI was the first one we'd need to accept the risks associated with sedation.
To that end, Children's Hospital is (rightfully) quite strict about the safety of babies undergoing sedation. They would not sedate Sproglet if she showed even a hint of a respiratory infection- which is why we had to reschedule the test five times. Every time we arrived at the scheduled MRI date, she would develop a fever or a head cold or a cough. Pretty difficult to avoid germs during a Boston winter, after all, and keeping her in a bubble was not an option. Plus, her pulmonologist believed that she was aspirating her formula, which was exacerbating all those chest infections, so getting her feeding under control was imperitive before the MRI.
Which brings me to the morning of the MRI. We'd followed the strict feeding schedule that Children's had given us (no formula after 4am, and only water until 8am), but what no one had taken into account was the fact that Sproggy's liquids are now thickened. The product that we use to thicken her formula has a food additive which, turns out, alters her digestion. Long story short, once the anesthesiologist found out I'd added the thickener to her water that morning, he refused to anesthetize her.
So, 5 months, 6 scheduled MRIs that had been rescheduled due to illness, only 2-3 more months until the issue that the MRI may or may not diagnose can no longer be treated surgically...we finally get to the Big Day and they tell us to go home.
The poor nurse who had to deliver that news to us. I'm not sure if it was the flaring, raging nostrils on my husband or the tears that were welling up in my eyes, but God Bless Her, she someone worked some magic in the tight MRI schedule, and pushed our appointment back 7 hours just so it could be done that day.
Yup, seven hours of a food deprived infant. That was a hoot. But honestly, the nurses were wonderful, so were the doctors. They took turns coming in to the room to play with Sproglet to help pass the time and distract her from the hunger pains. They even brought in 4 extra nurses who sang "All About that Bass" to her while one of them inserted her IV (she loves Meghan Trainor) to distract her from the pain of the needle.
And the best part for me was that, since I was focused on keeping Sproggy calm as possible, I didn't have time to ruminate on anything that could possibly go wrong. Not that I thought anything would go wrong, but that fun anxiety disorder that I have doesn't really care about reality.
Anyway, they finally took her back at 3:30... She took a big liking to the handsome anesthesiologist, went right into his arms and gave him her best big smile. No complaints from her, no sir, not in biceps like those. She's just like her mommy.
And then, suddenly, she was all done. We were brought back to recovery where she was still asleep but starting to wake up. Once she was fully awake she downed a bottle of formula quicker than I'd ever seen, came home and slept like a log. She really did great.
So now we wait for results. We managed to bump the appointment with the neurosurgeon up by a couple of weeks, so we'll find out if surgery is needed. My fingers are crossed that the answer will be "no" to that. But if she does have a tethered spinal cord, it could mean the difference between her walking or not. Kind of a big deal.
Whatever the outcome, I do know she'll face any challenge gracefully... and she will help me do so gracefully as well. She's proving herself to be a fierce little girl and I'm in awe of her ability to stare down a challenge.
To that end, Children's Hospital is (rightfully) quite strict about the safety of babies undergoing sedation. They would not sedate Sproglet if she showed even a hint of a respiratory infection- which is why we had to reschedule the test five times. Every time we arrived at the scheduled MRI date, she would develop a fever or a head cold or a cough. Pretty difficult to avoid germs during a Boston winter, after all, and keeping her in a bubble was not an option. Plus, her pulmonologist believed that she was aspirating her formula, which was exacerbating all those chest infections, so getting her feeding under control was imperitive before the MRI.
Which brings me to the morning of the MRI. We'd followed the strict feeding schedule that Children's had given us (no formula after 4am, and only water until 8am), but what no one had taken into account was the fact that Sproggy's liquids are now thickened. The product that we use to thicken her formula has a food additive which, turns out, alters her digestion. Long story short, once the anesthesiologist found out I'd added the thickener to her water that morning, he refused to anesthetize her.
So, 5 months, 6 scheduled MRIs that had been rescheduled due to illness, only 2-3 more months until the issue that the MRI may or may not diagnose can no longer be treated surgically...we finally get to the Big Day and they tell us to go home.
The poor nurse who had to deliver that news to us. I'm not sure if it was the flaring, raging nostrils on my husband or the tears that were welling up in my eyes, but God Bless Her, she someone worked some magic in the tight MRI schedule, and pushed our appointment back 7 hours just so it could be done that day.
 |
| "You are, LIT'RALLY, the worst mother on the planet." |
Yup, seven hours of a food deprived infant. That was a hoot. But honestly, the nurses were wonderful, so were the doctors. They took turns coming in to the room to play with Sproglet to help pass the time and distract her from the hunger pains. They even brought in 4 extra nurses who sang "All About that Bass" to her while one of them inserted her IV (she loves Meghan Trainor) to distract her from the pain of the needle.
And the best part for me was that, since I was focused on keeping Sproggy calm as possible, I didn't have time to ruminate on anything that could possibly go wrong. Not that I thought anything would go wrong, but that fun anxiety disorder that I have doesn't really care about reality.
Anyway, they finally took her back at 3:30... She took a big liking to the handsome anesthesiologist, went right into his arms and gave him her best big smile. No complaints from her, no sir, not in biceps like those. She's just like her mommy.
And then, suddenly, she was all done. We were brought back to recovery where she was still asleep but starting to wake up. Once she was fully awake she downed a bottle of formula quicker than I'd ever seen, came home and slept like a log. She really did great.
So now we wait for results. We managed to bump the appointment with the neurosurgeon up by a couple of weeks, so we'll find out if surgery is needed. My fingers are crossed that the answer will be "no" to that. But if she does have a tethered spinal cord, it could mean the difference between her walking or not. Kind of a big deal.
Whatever the outcome, I do know she'll face any challenge gracefully... and she will help me do so gracefully as well. She's proving herself to be a fierce little girl and I'm in awe of her ability to stare down a challenge.
Monday, January 30, 2017
Early Intervention is the Best Thing Ever/Insurance is the Worst Thing Ever
Sproglet's pediatrician, being the all knowing, wonderful person that she is, referred us for Early Intervention very early in Sproglet's life. I believe it was her three-month check up. We didn't have a diagnosis yet, but were in the early stages of testing for a genetic abnormality. Dr. R asked how I'd feel about starting her in Occupational Therapy- not that she was worried per se, but just based on the belief that it couldn't hurt. If it turned out she needed it, then great, we were ahead of the curve.
Great, I thought. So we started intake with an Early Intervention company near us. I had no idea what to expect, but I can tell you that I never dreamed so much GOOD would come from this one little referral.
Sproglet underwent an evaluation, and was accepted into Early Intervention. In our state, every child who qualifies for EI receives it free of charge until the age of three. She was scheduled for Occupational Therapy, and after a month or so, we got to meet her therapist and Sproglet got to work.
I have to laugh when I look back on those early days. Especially when they'd ask me what goals I had in mind for Sproglet. I didn't have a clue what to tell them! She was undiagnosed, so I couldn't point to typical delays that 9p kids experience, nor did I really know what OT was until her therapist explained it to me.
Basically OTs work with people (infants to adults) to identify ways to improve their conditions. Sproglet, we know, had a lot of motor and muscle delays that needed to be attended to, and her therapist would work one on one with her to develop a treatment plan. For example, at 9.5 months, Sproglet should be getting close to sitting up on her own, or crawling. In reality, she's nowhere near these points. She can sit up for short periods of time with support, but tires quickly, and she doesn't have the core strength to hold herself up on her knees in order to crawl. So the OT works with her to strengthen those muscle groups- and shows us, her parents, as well as her Day Care teachers, how to help her build those foundations. This woman, who can't be more than a few years out of college, is excellent. Always trying different things to see what works best for Sproggy, giving us pointers. Oh and she's an incredible cheerleader, genuinely thrilled whenever Sproglet develops a new skill. It's just awesome to watch.
Now that we have a diagnosis of T9p, and we know that many people with the condition struggle with communication, we have also added a Speech Therapist to the team. While of course a 9.5 month old isn't going to be speaking words, she works with Sproglet on communication- baby sign language and the like. She is also a great support for both Sproggy and myself. I get texts from her and the OT all the time, asking how things are going and if we need anything. They're great.
Now, for US. We have also been invited to take part in a Parents' Group that meets monthly- for parents of kids with special needs who are involved in EI. Let me tell you, the feeling of being in a room full of parents who, while they all have totally different experiences, just simply understand the issues that Special Needs families face- man, it's incredible. I've cried with these people, fumed with them, laughed and celebrated. I mean, you try to explain what it's like to have your life revolve around a child who needs constant supervision and medical care to someone who's never had to deal with it.... it can be really frustrating. Not that I'm looking for sympathy, but the fact is that everything- everything- in my life now has to take a back seat to ensuring her care. And as such, other important matters, such as work, need to be reorganized.
I had a coworker complain that I was on the phone on non-work related issues a few weeks ago. What I couldn't explain to him was that Sproglet's medicaid had been cancelled (for reasons still unknown), and we were therefore receiving medical bills to the tune of $12,000 . And those bills would be growing! Yes, we have really good primary insurance, but apparently when so many bills get submitted to your insurance company, they just say "nope" and the bills get redirected to you. Oh and we were receiving calls from Collections Agencies threatening lawsuits if the bills weren't paid.
Sproglet has a Disability Supplement, which means that, in Massachusetts anyway, she will always, always have insurance through the state (we hope, anyway). She has so many complex needs that Medicaid supplements a huge amount of her insurance. I am eternally grateful for this, and until now, I'd never understood how a family with insurance could go broke due to medical bills. And there are people who have much more difficult medical issues than we do...Its amazing how quickly it all adds up.
Anyway, due to a paperwork misfiling, Sproglet's Medicaid had been cancelled. That meant we were on the hook for: every co pay for every doctor we were scheduled to see ($30 a pop, and when you see four doctors a week, that adds up), her formula ($50 per can, at 2-3 cans per week), her medical equipment (a ventilator to treat her respiratory infections), AND her Early Intervention.
So, yes, unfortunately the Insurance Office has the same working hours as I do. I would be placed on hold waiting for the next available agent and do my work- but basically be tied to my desk. I couldn't really schedule meetings or interviews until I was able to get a hold of someone who could get the policy reinstated. In all, this took roughly 5 full days to get sorted out. That's a lot of time for a working professional.
The good news is that the policy was fixed and reinstated... but we'd already paid a LOT of money up front for the Co-Pays (hospital policy requires payment upon service) and we will not see that money reimbursed.
Am I complaining? Well, yes, I am. Sometimes I have to vent a little.
Great, I thought. So we started intake with an Early Intervention company near us. I had no idea what to expect, but I can tell you that I never dreamed so much GOOD would come from this one little referral.
Sproglet underwent an evaluation, and was accepted into Early Intervention. In our state, every child who qualifies for EI receives it free of charge until the age of three. She was scheduled for Occupational Therapy, and after a month or so, we got to meet her therapist and Sproglet got to work.
I have to laugh when I look back on those early days. Especially when they'd ask me what goals I had in mind for Sproglet. I didn't have a clue what to tell them! She was undiagnosed, so I couldn't point to typical delays that 9p kids experience, nor did I really know what OT was until her therapist explained it to me.
Basically OTs work with people (infants to adults) to identify ways to improve their conditions. Sproglet, we know, had a lot of motor and muscle delays that needed to be attended to, and her therapist would work one on one with her to develop a treatment plan. For example, at 9.5 months, Sproglet should be getting close to sitting up on her own, or crawling. In reality, she's nowhere near these points. She can sit up for short periods of time with support, but tires quickly, and she doesn't have the core strength to hold herself up on her knees in order to crawl. So the OT works with her to strengthen those muscle groups- and shows us, her parents, as well as her Day Care teachers, how to help her build those foundations. This woman, who can't be more than a few years out of college, is excellent. Always trying different things to see what works best for Sproggy, giving us pointers. Oh and she's an incredible cheerleader, genuinely thrilled whenever Sproglet develops a new skill. It's just awesome to watch.
Now that we have a diagnosis of T9p, and we know that many people with the condition struggle with communication, we have also added a Speech Therapist to the team. While of course a 9.5 month old isn't going to be speaking words, she works with Sproglet on communication- baby sign language and the like. She is also a great support for both Sproggy and myself. I get texts from her and the OT all the time, asking how things are going and if we need anything. They're great.
Now, for US. We have also been invited to take part in a Parents' Group that meets monthly- for parents of kids with special needs who are involved in EI. Let me tell you, the feeling of being in a room full of parents who, while they all have totally different experiences, just simply understand the issues that Special Needs families face- man, it's incredible. I've cried with these people, fumed with them, laughed and celebrated. I mean, you try to explain what it's like to have your life revolve around a child who needs constant supervision and medical care to someone who's never had to deal with it.... it can be really frustrating. Not that I'm looking for sympathy, but the fact is that everything- everything- in my life now has to take a back seat to ensuring her care. And as such, other important matters, such as work, need to be reorganized.
I had a coworker complain that I was on the phone on non-work related issues a few weeks ago. What I couldn't explain to him was that Sproglet's medicaid had been cancelled (for reasons still unknown), and we were therefore receiving medical bills to the tune of $12,000 . And those bills would be growing! Yes, we have really good primary insurance, but apparently when so many bills get submitted to your insurance company, they just say "nope" and the bills get redirected to you. Oh and we were receiving calls from Collections Agencies threatening lawsuits if the bills weren't paid.
Sproglet has a Disability Supplement, which means that, in Massachusetts anyway, she will always, always have insurance through the state (we hope, anyway). She has so many complex needs that Medicaid supplements a huge amount of her insurance. I am eternally grateful for this, and until now, I'd never understood how a family with insurance could go broke due to medical bills. And there are people who have much more difficult medical issues than we do...Its amazing how quickly it all adds up.
Anyway, due to a paperwork misfiling, Sproglet's Medicaid had been cancelled. That meant we were on the hook for: every co pay for every doctor we were scheduled to see ($30 a pop, and when you see four doctors a week, that adds up), her formula ($50 per can, at 2-3 cans per week), her medical equipment (a ventilator to treat her respiratory infections), AND her Early Intervention.
So, yes, unfortunately the Insurance Office has the same working hours as I do. I would be placed on hold waiting for the next available agent and do my work- but basically be tied to my desk. I couldn't really schedule meetings or interviews until I was able to get a hold of someone who could get the policy reinstated. In all, this took roughly 5 full days to get sorted out. That's a lot of time for a working professional.
The good news is that the policy was fixed and reinstated... but we'd already paid a LOT of money up front for the Co-Pays (hospital policy requires payment upon service) and we will not see that money reimbursed.
Am I complaining? Well, yes, I am. Sometimes I have to vent a little.
The long road to MRI
It's been a while since I last updated this blog. To be honest, not very much has happened that I felt warranted a post- which is a good thing. Not that it's been boring, by any stretch. Our days have been very full- with new developments, doctors appointments, daycare challenges. Well, let me back up and begin at the beginning.
My last posting, Sproglet was 5 months. She's now 9- almost 10- months old. It actually hurts to acknowledge that, because I love love LOVE having a baby in the house. She's just so damned adorable with all her babyness and whatnot, I just feel so bittersweet that she's getting older. But that's such a stupid thing to complain about so I'll stop that now.
When Sproglet was about a month old, a neurosurgeon at Children's Hospital decided that she would need to undergo an MRI at around six months of age. The reason? He was concerned that she may possess what's known as a "tethered spinal cord" which, for the sake of brevity, means that as she grows, she could have a lot of difficulty with movement, bladder control- important things like that. IF she does have a tethered cord, they would recommend surgery to correct it and hopefully head off those issues. However, the surgery would need to take place before the age of 12-13 months, as her growth would then start to impede any surgical intervention.
So it was good that we had the plan. MRI at 6-7 months, followed by possible surgery to correct the problem. Yeah, not so easy.
Babies need to be sedated for an MRI. It's a long test, probably 45 minutes, and the patient has to lie still the entire time. So Sproglet has to undergo anesthesia, which they made sure to inform me, can be quite risky for an infant. Not my favorite sentence in the world, but hey, it's a world renowned Children's Hospital, they know what they're doing and will do it safely.
They won't sedate an infant who has been ill during the three weeks prior to an MRI. So, luckily, we had the one infant in the world who could live through a cold New England weather, attend day care with other babies, have a brother who attends a public school, and never once get sick!
No wait, the opposite of that. Sproglet caught EVERY KNOWN BUG in the Boston area from September to January. Literally- if she wasn't sniffling,she was hacking up a lung, unable to sleep, miserable. And this lasted literally 5 months. Sick. For 5 months. In her pediatrician's office 2 times per week, concerned about pneumonia. Antibiotics, steroids.. Nothing would clear this stuff up. SO the MRI was rescheduled. And rescheduled again. And again.
We had been referred to a pulmonologist who suggested that Sproglet might be aspirating (choking on) her formula- the theory being that lungs that are constantly taking in bits of liquid are going to have a harder time clearing out a respiratory bug. After several feeding studies, including a barium x-ray, where they fed her radioactive fluids while watching on a screen to see whether liquid was in fact entering her lungs (spoiler, yup, it sure was!) we finally got a plan going to try thickened formula to see if that would improve things.
So we started adding oatmeal to her formula. Gross. I mean, it was like sludge. Imagine having to drink a smoothy made out of lukewarm oatmeal with expired milk (that's what her special Allergy formula smells like- oh yeah I forgot to mention someone, I forget who, but it was a doctor, changed her formula to a special non-dairy formula for some reason. Well, the reason was that they suspect she has a milk protein allergy. Anyway, that's all good now... Skin has cleared up a lot, less gas, all good things. Oh and insurance covers the cost which is good because this stuff is $50 per can) whenever you get hungry. Oh and the nipples on your bottles don't let any food through, so you're working your butt off but getting very little food, and meals take FOEVER.
So, predictably, she went on a mini hunger strike. Then, another feeding specialist recommended stopping the oatmeal and switching to a product called "Simply Thick", which is a gel that is added to formula, which is tasteless and gives a much more uniform "smoothie-like" texture. This was much more palatable and Sproglet ended her hunger strike.
Naively assuming we'd found the magic formula to a healthy baby who can actually eat her meals and not choke on them, we went online to purchase some of this stuff. We googled "Simply Thick" and were greeted with top hits saying things like "FDA warning about Simply Thick" and "Not for infants!" Ever so slightly alarmed, we read more about these warnings to learn that several babies had developed a condition called NEC (Necrotizing Enterocolitis) and died after having Simply Thick added to their diets- and the FDA had strong warnings against giving the stuff to infants under 12 months of age. Oh and the website for the actual product has the same warnings right on their page. A tad disconcerting.
Luckily, a quick call to her pediatrician reassured us that it was probably OK to continue giving her the product- that the babies who had gotten ill had been suffering from other ailments and had immature digestive systems that Sproglet didn't have. Still- there was a risk here that we had to assume was less than the risk of her choking on her formula.
We decided to continue with the Simply Thick and just keep a super close eye on her for any digestive weirdness. I would be lying though, if I said I didn't think of those parents who lost their babies every time I mix a bottle for her. There's risk associated with everything, I guess. I felt better knowing that her doctor, who'd known her from birth, was comfortable with the addition. (I love her doctor- she's brilliant and warm and amazing and totally puts up with me when I'm freaking out, answers all my questions and researches stuff she's not 100% familiar with.)
Onto the good news: since starting Simply Thick, Sproglet has developed a cold but was able to clear it out of her system relatively quickly, suggesting that the aspiration was the culprit for the constant respiratory infections. She's able to eat without choking, has good poops, less gas and acid, her excema has improved. It's overall a good decision.
So that brings us to today. And yes, the above paragraphs are 4.5 months worth of stuff condensed down. We are scheduled for our fifth MRI appointment (because she'd been sick for every other MRI we'd had scheduled) tomorrow morning. She can't eat after midnight tonight (which will be great because she likes to snack overnight, just like I do). I'm hoping and praying that we can finally get the test over and done with so we can see if there's surgery on our horizon.
Of course, I'm really nervous about her undergoing anesthesia tomorrow but again, she's at the top hospital for children in the world, they know how to take care of her. Still. She's so small and relies on me so much, and I won't be able to stay with her during the procedure. I hate the idea of leaving her. But we'll all be ok.
Next time, hopefully, I'll be able to report a normal spinal cord, no surgery in sight and a healthy, happily developing baby.
My last posting, Sproglet was 5 months. She's now 9- almost 10- months old. It actually hurts to acknowledge that, because I love love LOVE having a baby in the house. She's just so damned adorable with all her babyness and whatnot, I just feel so bittersweet that she's getting older. But that's such a stupid thing to complain about so I'll stop that now.
When Sproglet was about a month old, a neurosurgeon at Children's Hospital decided that she would need to undergo an MRI at around six months of age. The reason? He was concerned that she may possess what's known as a "tethered spinal cord" which, for the sake of brevity, means that as she grows, she could have a lot of difficulty with movement, bladder control- important things like that. IF she does have a tethered cord, they would recommend surgery to correct it and hopefully head off those issues. However, the surgery would need to take place before the age of 12-13 months, as her growth would then start to impede any surgical intervention.
So it was good that we had the plan. MRI at 6-7 months, followed by possible surgery to correct the problem. Yeah, not so easy.
Babies need to be sedated for an MRI. It's a long test, probably 45 minutes, and the patient has to lie still the entire time. So Sproglet has to undergo anesthesia, which they made sure to inform me, can be quite risky for an infant. Not my favorite sentence in the world, but hey, it's a world renowned Children's Hospital, they know what they're doing and will do it safely.
They won't sedate an infant who has been ill during the three weeks prior to an MRI. So, luckily, we had the one infant in the world who could live through a cold New England weather, attend day care with other babies, have a brother who attends a public school, and never once get sick!
No wait, the opposite of that. Sproglet caught EVERY KNOWN BUG in the Boston area from September to January. Literally- if she wasn't sniffling,she was hacking up a lung, unable to sleep, miserable. And this lasted literally 5 months. Sick. For 5 months. In her pediatrician's office 2 times per week, concerned about pneumonia. Antibiotics, steroids.. Nothing would clear this stuff up. SO the MRI was rescheduled. And rescheduled again. And again.
We had been referred to a pulmonologist who suggested that Sproglet might be aspirating (choking on) her formula- the theory being that lungs that are constantly taking in bits of liquid are going to have a harder time clearing out a respiratory bug. After several feeding studies, including a barium x-ray, where they fed her radioactive fluids while watching on a screen to see whether liquid was in fact entering her lungs (spoiler, yup, it sure was!) we finally got a plan going to try thickened formula to see if that would improve things.
So we started adding oatmeal to her formula. Gross. I mean, it was like sludge. Imagine having to drink a smoothy made out of lukewarm oatmeal with expired milk (that's what her special Allergy formula smells like- oh yeah I forgot to mention someone, I forget who, but it was a doctor, changed her formula to a special non-dairy formula for some reason. Well, the reason was that they suspect she has a milk protein allergy. Anyway, that's all good now... Skin has cleared up a lot, less gas, all good things. Oh and insurance covers the cost which is good because this stuff is $50 per can) whenever you get hungry. Oh and the nipples on your bottles don't let any food through, so you're working your butt off but getting very little food, and meals take FOEVER.
So, predictably, she went on a mini hunger strike. Then, another feeding specialist recommended stopping the oatmeal and switching to a product called "Simply Thick", which is a gel that is added to formula, which is tasteless and gives a much more uniform "smoothie-like" texture. This was much more palatable and Sproglet ended her hunger strike.
Naively assuming we'd found the magic formula to a healthy baby who can actually eat her meals and not choke on them, we went online to purchase some of this stuff. We googled "Simply Thick" and were greeted with top hits saying things like "FDA warning about Simply Thick" and "Not for infants!" Ever so slightly alarmed, we read more about these warnings to learn that several babies had developed a condition called NEC (Necrotizing Enterocolitis) and died after having Simply Thick added to their diets- and the FDA had strong warnings against giving the stuff to infants under 12 months of age. Oh and the website for the actual product has the same warnings right on their page. A tad disconcerting.
Luckily, a quick call to her pediatrician reassured us that it was probably OK to continue giving her the product- that the babies who had gotten ill had been suffering from other ailments and had immature digestive systems that Sproglet didn't have. Still- there was a risk here that we had to assume was less than the risk of her choking on her formula.
We decided to continue with the Simply Thick and just keep a super close eye on her for any digestive weirdness. I would be lying though, if I said I didn't think of those parents who lost their babies every time I mix a bottle for her. There's risk associated with everything, I guess. I felt better knowing that her doctor, who'd known her from birth, was comfortable with the addition. (I love her doctor- she's brilliant and warm and amazing and totally puts up with me when I'm freaking out, answers all my questions and researches stuff she's not 100% familiar with.)
Onto the good news: since starting Simply Thick, Sproglet has developed a cold but was able to clear it out of her system relatively quickly, suggesting that the aspiration was the culprit for the constant respiratory infections. She's able to eat without choking, has good poops, less gas and acid, her excema has improved. It's overall a good decision.
So that brings us to today. And yes, the above paragraphs are 4.5 months worth of stuff condensed down. We are scheduled for our fifth MRI appointment (because she'd been sick for every other MRI we'd had scheduled) tomorrow morning. She can't eat after midnight tonight (which will be great because she likes to snack overnight, just like I do). I'm hoping and praying that we can finally get the test over and done with so we can see if there's surgery on our horizon.
Of course, I'm really nervous about her undergoing anesthesia tomorrow but again, she's at the top hospital for children in the world, they know how to take care of her. Still. She's so small and relies on me so much, and I won't be able to stay with her during the procedure. I hate the idea of leaving her. But we'll all be ok.
Next time, hopefully, I'll be able to report a normal spinal cord, no surgery in sight and a healthy, happily developing baby.
Tuesday, October 4, 2016
A little online smackdown
So the online world is a fraught, fraught place. I knew this even before I started reaching out on Facebook groups for Trisomy 9, looking for support or to compare notes with other families on their experiences. It's the reason I refuse to read the comments on news articles on FB- the comments sections are just filled with people attacking each other, saying horrible things about each other's moms, threatening bodily harm. It's ugly. So ugly.
Anyway, when we received Sproglet's diagnosis, one of the tips our geneticist gave us was to find other families who are dealing with a similar diagnosis. Make friends, build a community, right?
So that's what I did.
I found a few sites on FB that had key words like "Chromosome 9 disorders" and "Trisomy 9p/q/m" etc. I started pouring through the posts there and of course questions started forming in my brain. So I referred to each page's "About" page to make sure I adhered to rules when I posted.
One of the things that's troubling me about T9p is the understanding that kids with this disorder have extreme difficulties with communication. One description I've read said "Trouble with connection between the brain and the mouth." That really sticks in my craw, I tell you...
Maybe because I look at my adorable, babbling (won't ever shut up) 5 month old and I see someone who wants, so badly, to talk. So A) I don't see how this bright little thing won't have superior conversation skills. She's practically giving State of the Union addresses in our living room every night. It's like the Sydney Freaking Opera House in her crib. She's vocal.
B) I am really, like, really worried that Sproglet will be treated badly- by other kids, by salespeople in department stores, by anyone really. I think how many times I've averted my eyes from a profoundly disabled person, instead of seeing them, looking at them and saying "Hi, how are you?" because I was just uncomfortable acknowledging their differences, or I was worried that I wouldn't be able to understand what they are saying so I just avoided the attempt. How awful I feel about that. It's dehumanizing. I don't want my baby to ever feel devalued. And that's where my discomfort with her diagnosis lives- in how she will feel in her own skin.
I will be working really hard with my therapist to learn how to not transfer that worry to Sproglet. This is MY problem, not hers.
And C) I need to admit that I'm still in some stage of denial here. I just don't believe that she's disabled. I look at her and see a typical baby, albeit with some motor delays and obvious hurtles to overcome. I guess acceptance will come as she grows and her abilities become more noticeable.
ANYWAY back to the FB page thing. So apparently, because there are differing levels of severity to Trisomy 9, it's considered rude to post on a page populated by parents who are dealing with majorly ill children. This I learned at 3 am when I got a FB message from a lady in California (gently, to be fair- though other interactions I've had with this woman lead me to believe that she's a Bossy McBosserton) scolding me for posting a question about speech delays on a page that is reserved for the parents of kids who may or may not live til next month. To be clear, no where on this particular page was this warning posted- in fact it encouraged posts by people of all karyotypes, to vent or get information. I didn't break any rules.
But of course, I feel awful. In no way was it my intention to post something trivial in the minds of terminal parents.... I simply just didn't know.
I guess it's good to be reminded that my worries can always be worse. But damn it, I need to acknowledge my own struggles too.
Anyway, lesson learned. I'll probably be much more selective in any posts I make from now on.
Oh and I will now make it a point to greet all the kids I pass when dropping off Sproglet's older brother at his inclusion (typical kids educated alongside kids with disabilities) school. Their comfort is more important than mine.
Anyway, when we received Sproglet's diagnosis, one of the tips our geneticist gave us was to find other families who are dealing with a similar diagnosis. Make friends, build a community, right?
So that's what I did.
I found a few sites on FB that had key words like "Chromosome 9 disorders" and "Trisomy 9p/q/m" etc. I started pouring through the posts there and of course questions started forming in my brain. So I referred to each page's "About" page to make sure I adhered to rules when I posted.
One of the things that's troubling me about T9p is the understanding that kids with this disorder have extreme difficulties with communication. One description I've read said "Trouble with connection between the brain and the mouth." That really sticks in my craw, I tell you...
Maybe because I look at my adorable, babbling (won't ever shut up) 5 month old and I see someone who wants, so badly, to talk. So A) I don't see how this bright little thing won't have superior conversation skills. She's practically giving State of the Union addresses in our living room every night. It's like the Sydney Freaking Opera House in her crib. She's vocal.
B) I am really, like, really worried that Sproglet will be treated badly- by other kids, by salespeople in department stores, by anyone really. I think how many times I've averted my eyes from a profoundly disabled person, instead of seeing them, looking at them and saying "Hi, how are you?" because I was just uncomfortable acknowledging their differences, or I was worried that I wouldn't be able to understand what they are saying so I just avoided the attempt. How awful I feel about that. It's dehumanizing. I don't want my baby to ever feel devalued. And that's where my discomfort with her diagnosis lives- in how she will feel in her own skin.
I will be working really hard with my therapist to learn how to not transfer that worry to Sproglet. This is MY problem, not hers.
And C) I need to admit that I'm still in some stage of denial here. I just don't believe that she's disabled. I look at her and see a typical baby, albeit with some motor delays and obvious hurtles to overcome. I guess acceptance will come as she grows and her abilities become more noticeable.
ANYWAY back to the FB page thing. So apparently, because there are differing levels of severity to Trisomy 9, it's considered rude to post on a page populated by parents who are dealing with majorly ill children. This I learned at 3 am when I got a FB message from a lady in California (gently, to be fair- though other interactions I've had with this woman lead me to believe that she's a Bossy McBosserton) scolding me for posting a question about speech delays on a page that is reserved for the parents of kids who may or may not live til next month. To be clear, no where on this particular page was this warning posted- in fact it encouraged posts by people of all karyotypes, to vent or get information. I didn't break any rules.
But of course, I feel awful. In no way was it my intention to post something trivial in the minds of terminal parents.... I simply just didn't know.
I guess it's good to be reminded that my worries can always be worse. But damn it, I need to acknowledge my own struggles too.
Anyway, lesson learned. I'll probably be much more selective in any posts I make from now on.
Oh and I will now make it a point to greet all the kids I pass when dropping off Sproglet's older brother at his inclusion (typical kids educated alongside kids with disabilities) school. Their comfort is more important than mine.
Friday, September 30, 2016
First week of testing in the books
So the thing about Trisomy 9p Syndrome is that it can (and usually does) come with a host of health complications. The big ones seem to be growth issues, low muscle tone accompanied with difficulty with movement and mobility, seizures, heart conditions, incontinence, and spinal cord problems.
Sproglet's doctors ordered us some tests so that we can get an idea of how she's faring; to try to detect any issues that we may have missed thus far (because she's been the picture of health since birth, besides the slow motor development).
We had an EEG to look for seizures this week, and met with a cardiologist to do an EKG and and Echo- basically checking her heart for holes and to make sure it's ticking away.
The EEG was tough for Sproggy. First of all, she needed to be sleep deprived for the test so that they would be sure she'd fall asleep during the test, to compare her brain waves asleep to her brain waves awake.
Do you know how to keep a 5 month old awake when she really wants to sleep? 'Cause I sure as hell don't.
Luckily the techs told me to try to prevent her from napping that morning rather than actually depriving her of a night's sleep. So instead of risking a nap in the car on the way to the hospital, I packed her into the car bright and early and sat her in the busy lobby and cafeteria of the hospital for 5 hours so she could "socialize". I'm glad to say it worked.
Her Occupational Therapist also came and hung out with us for an hour, which helped pass the time. Sproglet loved the attention and ended up making some friends in both the cafeteria and the neurology waiting room while I chugged coffee and attempted to look happy to be there.
What I'm trying to say is that the 5 month old was a lot less cranky about the whole test than her 37 year old mother.
Well, at least until they started hooking up the machine. Hundreds (ok, slight exaggeration, but a LOT) of little electrodes were attached to her head and secured with a gauze bandage. At this point the poor kid was exhausted and annoyed by the constant poking, prodding and moving. But eventually the tech finished and she was allowed to relax and nap.
We're still waiting on the results.
ONTO CARDIOLOGY
So Thursday was a bit easier in cardiology. They did an EKG to check her heart rhythms (all good) and and Echo-Cardiogram to look at her heart from all angles, to be sure there weren't any holes or other concerns. All clear!
So... I'm feeling pretty good this week, anxiety wise. Sproglet passed some stressful tests and we don't need to worry too much about those potential complications.
I will say, though, on another hand (because let's face it, even if she's physically healthy, she still has an extra chromosome and I have to accept that).... I dropped her off at daycare today and plopped her down next to another 5 month old baby. It is becoming more apparent to me that Sproglet is, in fact, pretty significantly delayed. The other baby was sitting up in an exer-saucer grabbing at toys and trying to put them in his mouth and making happy shrieks that burst my eardrums. Sproglet was sitting quietly in a bouncy-seat, her hands held close to her body in fists, not making much noise but smiling sweetly at her teacher. Now, is that just her personality? Probably, yes, partly. But putting her next to a peer (actually the kid in question is about 2-3 weeks younger than her) does remind me that she is delayed. There's no shame in that for me, it just is what it is.
And chances are that once she gets going in Early Intervention, she'll catch up. At least, that's the hope.
Anyway, I think that's just the way of things with a Special Needs kid. You're psyched about the good stuff but ache over the sad stuff. The yin and the yang.
Sproglet's doctors ordered us some tests so that we can get an idea of how she's faring; to try to detect any issues that we may have missed thus far (because she's been the picture of health since birth, besides the slow motor development).
We had an EEG to look for seizures this week, and met with a cardiologist to do an EKG and and Echo- basically checking her heart for holes and to make sure it's ticking away.
The EEG was tough for Sproggy. First of all, she needed to be sleep deprived for the test so that they would be sure she'd fall asleep during the test, to compare her brain waves asleep to her brain waves awake.
Do you know how to keep a 5 month old awake when she really wants to sleep? 'Cause I sure as hell don't.
Luckily the techs told me to try to prevent her from napping that morning rather than actually depriving her of a night's sleep. So instead of risking a nap in the car on the way to the hospital, I packed her into the car bright and early and sat her in the busy lobby and cafeteria of the hospital for 5 hours so she could "socialize". I'm glad to say it worked.
Her Occupational Therapist also came and hung out with us for an hour, which helped pass the time. Sproglet loved the attention and ended up making some friends in both the cafeteria and the neurology waiting room while I chugged coffee and attempted to look happy to be there.
What I'm trying to say is that the 5 month old was a lot less cranky about the whole test than her 37 year old mother.
Well, at least until they started hooking up the machine. Hundreds (ok, slight exaggeration, but a LOT) of little electrodes were attached to her head and secured with a gauze bandage. At this point the poor kid was exhausted and annoyed by the constant poking, prodding and moving. But eventually the tech finished and she was allowed to relax and nap.
We're still waiting on the results.
ONTO CARDIOLOGY
So Thursday was a bit easier in cardiology. They did an EKG to check her heart rhythms (all good) and and Echo-Cardiogram to look at her heart from all angles, to be sure there weren't any holes or other concerns. All clear!
So... I'm feeling pretty good this week, anxiety wise. Sproglet passed some stressful tests and we don't need to worry too much about those potential complications.
I will say, though, on another hand (because let's face it, even if she's physically healthy, she still has an extra chromosome and I have to accept that).... I dropped her off at daycare today and plopped her down next to another 5 month old baby. It is becoming more apparent to me that Sproglet is, in fact, pretty significantly delayed. The other baby was sitting up in an exer-saucer grabbing at toys and trying to put them in his mouth and making happy shrieks that burst my eardrums. Sproglet was sitting quietly in a bouncy-seat, her hands held close to her body in fists, not making much noise but smiling sweetly at her teacher. Now, is that just her personality? Probably, yes, partly. But putting her next to a peer (actually the kid in question is about 2-3 weeks younger than her) does remind me that she is delayed. There's no shame in that for me, it just is what it is.
And chances are that once she gets going in Early Intervention, she'll catch up. At least, that's the hope.
Anyway, I think that's just the way of things with a Special Needs kid. You're psyched about the good stuff but ache over the sad stuff. The yin and the yang.
Wednesday, September 28, 2016
What this diagnosis actually means
So, what does this diagnosis actually mean?
Short answer: we don't know.
This condition appears to affect each individual differently. Infuriatingly so. It would be so much easier to have a definitive list of what we can expect. Still, in the short time I've had to research T9p, I can say that most people with the condition experience similar symptoms:
* developmental delays (ranging from mild learning disabilities to full-on intellectual disabilities)
* joint problems (like hip dysplasia) and underdeveloped bones
* facial characteristics like broad nose bridges and larger ears, and downturned eyes
* tethered spinal cords
* speech delays or complete non-verbal communication
* seizures
* heart conditions
There are more but those seem to be the most common. Sproglet does present some of these in varying degrees (the hips, the underdeveloped bones and the spine thing are the big ones). My biggest concern at this stage is the intellectual disability. But honestly, if you look at my baby, you see a bright eyed, curious little girl who loves to connect with and chat with every person she comes into contact with. Honestly, I've seen more strangers just crack up in delight whenever they look at her, and she looks them straight in the eye and emits the loudest and most adorable "SQUEEE!" sound. She really knows, at 5 months, how to make complete strangers feel like the most important person in the room. She's displaying a skill set that most adults don't have at an incredibly young age.
She's also keen to learn. As of this writing, she's learned to roll from back to front. So she has the capability to learn; albeit maybe a bit slower than her peer group.
So my plan?
Just keep on keepin' on. She started with Early Intervention this week; they will work with her on developing skills like communication, muscle development and learning.
This week she's undergoing neurological testing to get a baseline on brain activity, so that if she ever experiences seizures, we'll know what to look for. Same goes with cardiology- they'll be looking for holes in her heart or any other weird heart conditions that we'll need to be aware of.
And later we'll get and MRI to determine what needs to be done, if anything, for her spine.
I admit, I still have moments of self-pitying emotions. Why my kid? I hate to think she's going to have challenges. But then I remember: EVERYONE has challenges. There are worse things than having or being a child with a genetic abnormality. Way worse. WAY, way worse.
I read this quote last night right before bed that struck me:
"Motherhood is about raising and celebrating the child you have, not the child you THOUGHT you would have. It's about understanding that she is exactly the person she is supposed to be. And that, if you're lucky, she might just be the teacher who turns you into the person you're supposed to be."
Damn, I'm crying again.
I'll update again after Sproglet's appointments this week.
'Til next time.
Short answer: we don't know.
This condition appears to affect each individual differently. Infuriatingly so. It would be so much easier to have a definitive list of what we can expect. Still, in the short time I've had to research T9p, I can say that most people with the condition experience similar symptoms:
* developmental delays (ranging from mild learning disabilities to full-on intellectual disabilities)
* joint problems (like hip dysplasia) and underdeveloped bones
* facial characteristics like broad nose bridges and larger ears, and downturned eyes
* tethered spinal cords
* speech delays or complete non-verbal communication
* seizures
* heart conditions
There are more but those seem to be the most common. Sproglet does present some of these in varying degrees (the hips, the underdeveloped bones and the spine thing are the big ones). My biggest concern at this stage is the intellectual disability. But honestly, if you look at my baby, you see a bright eyed, curious little girl who loves to connect with and chat with every person she comes into contact with. Honestly, I've seen more strangers just crack up in delight whenever they look at her, and she looks them straight in the eye and emits the loudest and most adorable "SQUEEE!" sound. She really knows, at 5 months, how to make complete strangers feel like the most important person in the room. She's displaying a skill set that most adults don't have at an incredibly young age.
She's also keen to learn. As of this writing, she's learned to roll from back to front. So she has the capability to learn; albeit maybe a bit slower than her peer group.
So my plan?
Just keep on keepin' on. She started with Early Intervention this week; they will work with her on developing skills like communication, muscle development and learning.
This week she's undergoing neurological testing to get a baseline on brain activity, so that if she ever experiences seizures, we'll know what to look for. Same goes with cardiology- they'll be looking for holes in her heart or any other weird heart conditions that we'll need to be aware of.
And later we'll get and MRI to determine what needs to be done, if anything, for her spine.
I admit, I still have moments of self-pitying emotions. Why my kid? I hate to think she's going to have challenges. But then I remember: EVERYONE has challenges. There are worse things than having or being a child with a genetic abnormality. Way worse. WAY, way worse.
I read this quote last night right before bed that struck me:
"Motherhood is about raising and celebrating the child you have, not the child you THOUGHT you would have. It's about understanding that she is exactly the person she is supposed to be. And that, if you're lucky, she might just be the teacher who turns you into the person you're supposed to be."
Damn, I'm crying again.
I'll update again after Sproglet's appointments this week.
'Til next time.
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