Good news first. Lauren saw immunology today and we don't have to go back until March! Her IgG counts are still low, but not low enough to replace. She had a weird episode of rapidly spreading hives last week that we thought were due to a delayed allergic reaction to an antibiotic. Immunologist thinks it was actually an infection of some kind. She is starting Lauren on Singulair. She wants us to give Zyrtec or Claritin every day. We talked about Lauren's chronic stuffy/runny nose, she wants us to try Flonase (I laughed out loud, it would take 2 adults minimum to get this done). We're going to try to do it when she's sleeping and see if it's even remotely possible.
Not great news is that Ryan had a PANDAS flare with strep throat and recently finished antibiotics. He was back to his happy go lucky self within two days of the antibiotic. Since it finished, he's back to being grumpy, sad, and just not himself. We're restarting his Keflex and hoping he gets back to baseline. I miss my kid!
Thursday, November 21, 2019
Saturday, November 9, 2019
Heavy
Wow! It's been....a really long time. It's been an insanely busy time. I am back in school for my bachelor's degree (fingers crossed, should be done in June). Ryan's in 4th grade and is amazing and wonderful (most of the time) and he turns 10 next month. Lauren is in 2nd grade and is amazing and wonderful (some of the time, lol). Ryan is really doing so amazing right now and I hope he doesn't feel lost in the shuffle and I hope he knows how lucky we feel to have him.
Maybe it's just this season of life I'm in, but damn. This is HARD. So hard. Like, I don't really know how I'm actually making this work, hard. Greg is working 6-7 days a week (lately 7) and sleeps during the day and then again a lot in the evenings (not complaining, working midnights sucks and I totally get it). I'm working full time, plus I'm in school. Ryan's 4th grade homework is a lot more involved than last year's homework. And medically, Lauren is apparently building a bucket list of visiting every freakin' pediatric specialist out there.
Lauren had a sleep study done recently, finally. She's a terrible sleeper and it's recommended for kids with Down syndrome to have a sleep study by age 4. I delayed it because I thought she wouldn't cooperate for the sleep study, but she did awesome. Greg got voted (by me) to take care of the sleep study. It came back that she has severe obstructive sleep apnea. While in REM sleep she has 40 episodes per hour of hypopnea (decreased breathing) or apnea. So yeah, her sleep sucks. She's already had her tonsils and adenoids removed. We can't do a CPAP because, oh yeah, she now has cyclic vomiting syndrome! And the episodes always come on at night. So constant positive pressure strapped to her face overnight is not an option. So next month she's having a sleep endoscopy by ENT. He is thinking she will need lingual tonsils removed (I didn't even know this was a thing) and reduction of the base of her tongue. She'll stay overnight in the ICU. Luckily her awesome GI doctor is co-boarding and getting her EGD (scope of her esophagus, stomach, and duodenum) done at the same time so we can minimize the number of times we have to have Lauren sedated. She's going to do some biopsies to check for things like EOE (eosinophilic esophagitis), celiac disease, and I don't know what else.
She has daily belly pain. Every freaking day she is in pain. About every 2-4 weeks this ends up becoming a vomiting episode between 11pm-3am, during which her abdominal pain is so severe she vomits and writhes around and I would do absolutely anything to take that pain from her. We now have some medications (Zofran and Maxalt) to use as needed for episodes to hopefully decrease/stop the vomiting episodes. Neurology said cyclic vomiting syndrome is a diagnosis of exclusion, but everything in Lauren's history fits. GI is going to rule out physiological causes of the vomiting during the EGD. I'm unwilling to try the medication that's often use to prevent vomiting cycles because a significant side effect is weight gain, which is already a struggle.
Another complicating factor is Lauren's immune system. She gets low grade sick a lot, and stays that way for longer than most. I brought it up with immunology. We started seeing immunology because we thought she was allergic to something. She has random episodes of lip swelling, eye redness, belly pain, and nasal congestion that tends to onset pretty quickly. All of the allergy testing, both blood and skin, has been extensive and negative. Lauren's white blood cell count has been trending down over the last year or so, along with lymphocytes and neutrophils and every single doctor we see asks about it. I asked the immunologist about her frequent illnesses, so she ordered blood work. And now Lauren is being evaluated for an immunodeficiency condition call CVID or common variable immune deficiency. Her IgG levels were low. Her viral counts were so low that the immunologist said they normally see those numbers in HIV patients. I don't even know what/if we're doing about that. They did some more blood work to see how she responded to her childhood vaccines. Out of the 13 strains of pneumonia kids get vaccinated for, she kept immunity to 4 of them. This is apparently pretty common in CVID. She had the pneumonia vaccine again last month and on Monday she will have more blood work done to see how she responded. We're also rechecking the IgG levels to see if they've budged. Treatment for CVID ranges from antibiotics to IVIG. And since we don't know how long her immune system has been like this, I'm nervous for this winter. She was recently sick and it's lingering still, even on antibiotics. Ryan had strep (accompanied by a PANDAS flare which has now thankfully subsided and I have my sweet and funny boy back), and Lauren started getting sick the same day. That was Halloween. She's still just not herself. I don't know if she got a virus on top of strep, but she's had a productive cough since Halloween and So. Much. Snot. I'm nervous for this winter. But she's got a nebulizer with albuterol and a really responsive pediatrician. The immune system issues are likely a result of her open heart surgery as a baby, because they thymus glad had to be completely removed. Apparently studies show that people who have to the thymus removed after 6 months old tend to do okay immunologically. Lauren was 6 weeks old, plus people with Down syndrome tend to have junky immune systems.
As much as all of this super sucks, it's making me more empathetic towards my sweet girl. I don't sleep at night if she doesn't sleep at night so mama is tired. But she can't help it. And her behavior? If I didn't ever sleep well, had abdominal pain every single day, and was frequently sick I would probably be crabby, too. Her behavior as a whole has been a lot better. We stopped her Tenex medication in June to see if it would help her to stop gaining weight. It has helped a little bit and her moods are a lot better overall. She's more engaging, friendly, talkative, and happier. She's just pretty impulsive. Today she bit me and then cried hysterically because she felt bad. The stubbornness is pretty unreal, but she comes by that naturally. Today I forced us to leave the house to go to the gluten free bakery because sometimes you just really need a donut. Lauren did not want to go in and wanted to stay in the car , which was obviously not an option (hello, CPS referral). So I coerced her into her adaptive stroller, gave her the tablet, and the whole bakery got to listen to Daniel Tiger singing about stopping to go potty right away. Worth it for the donuts and desperate times call for desperate measures.
I'm still dealing with POTS but weekly IV hydration is helping. It kills my day off because I'm spending 2-3 hours in the hospital infusion center when I'd rather be able to do other things (like homework). I am so grateful that I have this treatment option available to me though, it really helps. I'm fatigued, I get dizzy, but generally speaking it's better than it was a year ago. I've had a couple of pretty scary spells that were not at all fun, but I'm currently trying a new medication to help prevent these.
Can I just say, PTSD for medical mamas is real? I think we should call it RTSD for recurrent traumatic stress disorder. 'Cause I'm not past it and I don't think I ever will be. I really struggle when Lauren is sick and now knowing she has a surgery coming up, I'm kind of a little bit of a mess. My mind immediately goes to dark places and my thoughts transport back to our five week stay for heart failure, sepsis, failure to thrive, and heart surgery. For even a minor surgery, I'm afraid she's going to die.
This is really hard stuff. I'm so fortunate to have family that helps us. Greg can't take time off work for Lauren's upcoming surgery so my twin sister is coming with me. Greg's mom and my mom are taking her to some specialist appointments this week because I can't keep missing work (I mean, I CAN, I have FMLA but it screws everyone over and I'm about tapped out of PTO). Lauren's anticipated recovery from the upcoming surgery is 2 weeks. I'm taking only 2 days off work (which gives me 3, since surgery is a Monday and I'm off on Wednesdays) and then my mom and/or mom-in-law will stay home with her until she can go back to school. I'm exhausted mentally, emotionally, and spiritually. Greg's exhausted physically because his midnight schedule is hard on a body and he only sleeps when the kid are at school during the day. Trying to build and maintain a relationship feels impossible sometimes when everything else feels like it's crumbling down around us.
I'm trying to keep a positive mindset. I AM thankful for Greg's job and mine. I'm so thankful for the access to medical care that we have. I'm thankful for our endless family support. Our life is hard right now. I don't think it's necessarily harder than anyone else's, it's just a different kind of hard that's siphoning the energy out of me and it just feels heavy. I'm trying to hard to be positive, partly because it's worked so well for me as a coping mechanism in the past.
This picture of Lauren from today pretty much captures my mood 95% of the time lately. Her cuteness is still as extreme as always. She's been calling me mama instead of mom or mommy and I love it. She decided that Monte needs a middle name, and declared today that it's Hope, like just like hers. Today she told me she wants a pet bunny named Snowball (probably because she instinctively knows she has a snowball's chance in hell of this happening). Plus she's learning how to read so she reads me books for hours at a time and it makes my heart smile to have a bookworm, just like I always was.
Maybe it's just this season of life I'm in, but damn. This is HARD. So hard. Like, I don't really know how I'm actually making this work, hard. Greg is working 6-7 days a week (lately 7) and sleeps during the day and then again a lot in the evenings (not complaining, working midnights sucks and I totally get it). I'm working full time, plus I'm in school. Ryan's 4th grade homework is a lot more involved than last year's homework. And medically, Lauren is apparently building a bucket list of visiting every freakin' pediatric specialist out there.
Lauren had a sleep study done recently, finally. She's a terrible sleeper and it's recommended for kids with Down syndrome to have a sleep study by age 4. I delayed it because I thought she wouldn't cooperate for the sleep study, but she did awesome. Greg got voted (by me) to take care of the sleep study. It came back that she has severe obstructive sleep apnea. While in REM sleep she has 40 episodes per hour of hypopnea (decreased breathing) or apnea. So yeah, her sleep sucks. She's already had her tonsils and adenoids removed. We can't do a CPAP because, oh yeah, she now has cyclic vomiting syndrome! And the episodes always come on at night. So constant positive pressure strapped to her face overnight is not an option. So next month she's having a sleep endoscopy by ENT. He is thinking she will need lingual tonsils removed (I didn't even know this was a thing) and reduction of the base of her tongue. She'll stay overnight in the ICU. Luckily her awesome GI doctor is co-boarding and getting her EGD (scope of her esophagus, stomach, and duodenum) done at the same time so we can minimize the number of times we have to have Lauren sedated. She's going to do some biopsies to check for things like EOE (eosinophilic esophagitis), celiac disease, and I don't know what else.
She has daily belly pain. Every freaking day she is in pain. About every 2-4 weeks this ends up becoming a vomiting episode between 11pm-3am, during which her abdominal pain is so severe she vomits and writhes around and I would do absolutely anything to take that pain from her. We now have some medications (Zofran and Maxalt) to use as needed for episodes to hopefully decrease/stop the vomiting episodes. Neurology said cyclic vomiting syndrome is a diagnosis of exclusion, but everything in Lauren's history fits. GI is going to rule out physiological causes of the vomiting during the EGD. I'm unwilling to try the medication that's often use to prevent vomiting cycles because a significant side effect is weight gain, which is already a struggle.
Another complicating factor is Lauren's immune system. She gets low grade sick a lot, and stays that way for longer than most. I brought it up with immunology. We started seeing immunology because we thought she was allergic to something. She has random episodes of lip swelling, eye redness, belly pain, and nasal congestion that tends to onset pretty quickly. All of the allergy testing, both blood and skin, has been extensive and negative. Lauren's white blood cell count has been trending down over the last year or so, along with lymphocytes and neutrophils and every single doctor we see asks about it. I asked the immunologist about her frequent illnesses, so she ordered blood work. And now Lauren is being evaluated for an immunodeficiency condition call CVID or common variable immune deficiency. Her IgG levels were low. Her viral counts were so low that the immunologist said they normally see those numbers in HIV patients. I don't even know what/if we're doing about that. They did some more blood work to see how she responded to her childhood vaccines. Out of the 13 strains of pneumonia kids get vaccinated for, she kept immunity to 4 of them. This is apparently pretty common in CVID. She had the pneumonia vaccine again last month and on Monday she will have more blood work done to see how she responded. We're also rechecking the IgG levels to see if they've budged. Treatment for CVID ranges from antibiotics to IVIG. And since we don't know how long her immune system has been like this, I'm nervous for this winter. She was recently sick and it's lingering still, even on antibiotics. Ryan had strep (accompanied by a PANDAS flare which has now thankfully subsided and I have my sweet and funny boy back), and Lauren started getting sick the same day. That was Halloween. She's still just not herself. I don't know if she got a virus on top of strep, but she's had a productive cough since Halloween and So. Much. Snot. I'm nervous for this winter. But she's got a nebulizer with albuterol and a really responsive pediatrician. The immune system issues are likely a result of her open heart surgery as a baby, because they thymus glad had to be completely removed. Apparently studies show that people who have to the thymus removed after 6 months old tend to do okay immunologically. Lauren was 6 weeks old, plus people with Down syndrome tend to have junky immune systems.
As much as all of this super sucks, it's making me more empathetic towards my sweet girl. I don't sleep at night if she doesn't sleep at night so mama is tired. But she can't help it. And her behavior? If I didn't ever sleep well, had abdominal pain every single day, and was frequently sick I would probably be crabby, too. Her behavior as a whole has been a lot better. We stopped her Tenex medication in June to see if it would help her to stop gaining weight. It has helped a little bit and her moods are a lot better overall. She's more engaging, friendly, talkative, and happier. She's just pretty impulsive. Today she bit me and then cried hysterically because she felt bad. The stubbornness is pretty unreal, but she comes by that naturally. Today I forced us to leave the house to go to the gluten free bakery because sometimes you just really need a donut. Lauren did not want to go in and wanted to stay in the car , which was obviously not an option (hello, CPS referral). So I coerced her into her adaptive stroller, gave her the tablet, and the whole bakery got to listen to Daniel Tiger singing about stopping to go potty right away. Worth it for the donuts and desperate times call for desperate measures.
I'm still dealing with POTS but weekly IV hydration is helping. It kills my day off because I'm spending 2-3 hours in the hospital infusion center when I'd rather be able to do other things (like homework). I am so grateful that I have this treatment option available to me though, it really helps. I'm fatigued, I get dizzy, but generally speaking it's better than it was a year ago. I've had a couple of pretty scary spells that were not at all fun, but I'm currently trying a new medication to help prevent these.
Can I just say, PTSD for medical mamas is real? I think we should call it RTSD for recurrent traumatic stress disorder. 'Cause I'm not past it and I don't think I ever will be. I really struggle when Lauren is sick and now knowing she has a surgery coming up, I'm kind of a little bit of a mess. My mind immediately goes to dark places and my thoughts transport back to our five week stay for heart failure, sepsis, failure to thrive, and heart surgery. For even a minor surgery, I'm afraid she's going to die.
This is really hard stuff. I'm so fortunate to have family that helps us. Greg can't take time off work for Lauren's upcoming surgery so my twin sister is coming with me. Greg's mom and my mom are taking her to some specialist appointments this week because I can't keep missing work (I mean, I CAN, I have FMLA but it screws everyone over and I'm about tapped out of PTO). Lauren's anticipated recovery from the upcoming surgery is 2 weeks. I'm taking only 2 days off work (which gives me 3, since surgery is a Monday and I'm off on Wednesdays) and then my mom and/or mom-in-law will stay home with her until she can go back to school. I'm exhausted mentally, emotionally, and spiritually. Greg's exhausted physically because his midnight schedule is hard on a body and he only sleeps when the kid are at school during the day. Trying to build and maintain a relationship feels impossible sometimes when everything else feels like it's crumbling down around us.
I'm trying to keep a positive mindset. I AM thankful for Greg's job and mine. I'm so thankful for the access to medical care that we have. I'm thankful for our endless family support. Our life is hard right now. I don't think it's necessarily harder than anyone else's, it's just a different kind of hard that's siphoning the energy out of me and it just feels heavy. I'm trying to hard to be positive, partly because it's worked so well for me as a coping mechanism in the past.
This picture of Lauren from today pretty much captures my mood 95% of the time lately. Her cuteness is still as extreme as always. She's been calling me mama instead of mom or mommy and I love it. She decided that Monte needs a middle name, and declared today that it's Hope, like just like hers. Today she told me she wants a pet bunny named Snowball (probably because she instinctively knows she has a snowball's chance in hell of this happening). Plus she's learning how to read so she reads me books for hours at a time and it makes my heart smile to have a bookworm, just like I always was.
Monday, February 11, 2019
On the eve of your seventh birthday
Dear Lauren,
It's hard to believe that when you wake up in the morning, you'll be seven years old. The pride and honor I feel to be blessed enough to be your mama isn't something I can't describe with words. You have made so many of my dreams come true.
When you were growing in my tummy, I had a lot of time to prepare for you. I spent over four months learning about you and trying to get a glimpse of what you would be. But what I didn't dare dream of was WHO you would be. I didn't know about this gorgeous little girl you would become. You love with your whole heart, you stand up for yourself and what you deserve even when it drives my crazy, and you've never met a dog you didn't want to hug. You love the color purple, and Barbies, and YouTube, and you surprise me every day. You love to read, you learn new things by the minute, and you never, ever, stop trying. You still let me rock you to sleep every night and you let me kiss you more times a day than either of us can count. You are the first person I see every morning and you always tell me to have a good day on my way out the door. You look up to your brother with fierce love in your eyes, and I know his eyes hold the same love for you. The way you look up at daddy and ask him to carry you up to bed is so adorable, and I know you know how cute you are. You are breaking down every barrier set to hold you back and you do it with a glint in your eye and a smirk on your lips. You are a world changer, my sweet girl. Nothing can hold you back.
I have had seven years so far to love you, hold you in my arms, and to call you mine. I am grateful to God every day for choosing us for each other, and I wouldn't change a thing about you. I hope your seventh year brings you even half of the joy I have in my heart for you.
Happy birthday, baby girl.
It's hard to believe that when you wake up in the morning, you'll be seven years old. The pride and honor I feel to be blessed enough to be your mama isn't something I can't describe with words. You have made so many of my dreams come true.
When you were growing in my tummy, I had a lot of time to prepare for you. I spent over four months learning about you and trying to get a glimpse of what you would be. But what I didn't dare dream of was WHO you would be. I didn't know about this gorgeous little girl you would become. You love with your whole heart, you stand up for yourself and what you deserve even when it drives my crazy, and you've never met a dog you didn't want to hug. You love the color purple, and Barbies, and YouTube, and you surprise me every day. You love to read, you learn new things by the minute, and you never, ever, stop trying. You still let me rock you to sleep every night and you let me kiss you more times a day than either of us can count. You are the first person I see every morning and you always tell me to have a good day on my way out the door. You look up to your brother with fierce love in your eyes, and I know his eyes hold the same love for you. The way you look up at daddy and ask him to carry you up to bed is so adorable, and I know you know how cute you are. You are breaking down every barrier set to hold you back and you do it with a glint in your eye and a smirk on your lips. You are a world changer, my sweet girl. Nothing can hold you back.
I have had seven years so far to love you, hold you in my arms, and to call you mine. I am grateful to God every day for choosing us for each other, and I wouldn't change a thing about you. I hope your seventh year brings you even half of the joy I have in my heart for you.
Happy birthday, baby girl.
Sunday, January 13, 2019
Family update (and service dogs are amazing) post
I finally started getting my IV fluid infusions. I go on Wednesdays to the infusion center at a hospital nearby. It takes about 2 hours. It's honesty not the miracle 'cure' I was hoping for. I was hoping that this would magically make me not have POTS anymore because I really freaking miss my life before. But I can say it's helping! Since I started weekly infusions, I haven't had to call into work, go home from work (other than during a bout of horrible bronchitis). On my FitBit, I don't show as many huge spikes in heart rate. I don't feel like I'm having as many drops in blood pressure. I'm able to do a little more walking on most days. Yesterday Lauren and I went shopping with my mom and by the second store my mom noticed I was struggling. But that was on the second store! I went to a yoga class at church this week and it was AMAZING! I was able to do the whole class. I did get really dizzy a couple of times during position changing. It made me wish I had Monte there to steady me. Generally I feel like the effects of the IV fluids wear off for me by Sunday but it helps me to get 4 good days! Mornings are generally worse for me, so luckily this morning I felt better by the time we had to leave for church.
I've found that Monte is really helpful for me! At church I realize I don't have to stand when everyone else does, etc. But I like to. I want to be able to fully participate. Since Monte doesn't go into Lauren's classroom with her, it's helpful for me to have him next to me to steady me when I get dizzy. (Greg works most weekends so generally I'm solo.) I cleared it with our service dog organization that it's okay for Monte to help me too sometimes when he isn't with Lauren. He's an awesome dog and so eager to work. Today I was a little dizzy and while Greg was actually with us today, I was able to just kind of touch his head and back to steady myself. When I'm out shopping, like I was with my mom, I can use a cart to lean on if I'm having trouble. It was actually SO nice to be at a store! I haven't been shopping like that in a really long time. I like to conserve my energy, and it was really nice to be able to "spend" some energy while out with my mom and Lauren.
Ryan has been doing fantastic. We all had a respiratory bug recently and seemed to recover from our symptoms. I did eventually go to urgent care the Sunday after Christmas because I was miserable, and got a Z pack. The kids seemed better, so we didn't worry about them. Until Ryan started licking/smacking his lips and got a big rash all around his mouth. He really couldn't help it, I think it was a tic. Plus he was continually clearing his throat, I don't know if it was residual from illness or if his throat clearing tic had returned. Either way, I asked his nurse practitioner if we could try antibiotics for him. It's so great, he's stopped licking his lips and the rash is clearing up nicely. Lauren had actually developed some significant anxiety a few days before Ryan's PANDAS symptoms returned. She couldn't even be away from me without crying if I was in the next room. She had started biting her nails down to the quick. She's never bitten her nails before! So I asked her nurse practitioner and we did a Z pack for her too. She is no longer biting her nails AND I'm typing upstairs alone as we speak!
Greg managed to avoid all illness, lucky guy. So he's been helping us and generally being amazing.
I've found that Monte is really helpful for me! At church I realize I don't have to stand when everyone else does, etc. But I like to. I want to be able to fully participate. Since Monte doesn't go into Lauren's classroom with her, it's helpful for me to have him next to me to steady me when I get dizzy. (Greg works most weekends so generally I'm solo.) I cleared it with our service dog organization that it's okay for Monte to help me too sometimes when he isn't with Lauren. He's an awesome dog and so eager to work. Today I was a little dizzy and while Greg was actually with us today, I was able to just kind of touch his head and back to steady myself. When I'm out shopping, like I was with my mom, I can use a cart to lean on if I'm having trouble. It was actually SO nice to be at a store! I haven't been shopping like that in a really long time. I like to conserve my energy, and it was really nice to be able to "spend" some energy while out with my mom and Lauren.
Ryan has been doing fantastic. We all had a respiratory bug recently and seemed to recover from our symptoms. I did eventually go to urgent care the Sunday after Christmas because I was miserable, and got a Z pack. The kids seemed better, so we didn't worry about them. Until Ryan started licking/smacking his lips and got a big rash all around his mouth. He really couldn't help it, I think it was a tic. Plus he was continually clearing his throat, I don't know if it was residual from illness or if his throat clearing tic had returned. Either way, I asked his nurse practitioner if we could try antibiotics for him. It's so great, he's stopped licking his lips and the rash is clearing up nicely. Lauren had actually developed some significant anxiety a few days before Ryan's PANDAS symptoms returned. She couldn't even be away from me without crying if I was in the next room. She had started biting her nails down to the quick. She's never bitten her nails before! So I asked her nurse practitioner and we did a Z pack for her too. She is no longer biting her nails AND I'm typing upstairs alone as we speak!
Greg managed to avoid all illness, lucky guy. So he's been helping us and generally being amazing.
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