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.