Did Atlas ever get tired?

Sometimes I wonder if Atlas ever got tired. I admit, I haven’t read Greek mythology in MANY years, so maybe we know the answer to that– but for argument’s sake, let’s just pretend like we don’t. I would imagine that at least one time in the duration of his planet-holding, the guy got tired.

As a point of reference, here’s where Scarlett has “scored” lately, in terms of development (she’s currently 15.5 months):

Cognitive skills: 7-8 months
Language skills: 7-8 months
Gross motor skills:
-Stationary skills: 14 months
-Locomotion skills: 9 months
-Object manipulation skills: 11 months
Social skills: 7-8 months
Self-help skills: 9 months

That’s almost a 50% delay in multiple areas. I knew that she was delayed in every one of these areas, but it’s a whole new ball game of difficult to hear someone verbally confirm the knowledge.

My mother-in-law called me yesterday to check in and ask how I was doing. To be honest, it changes from day to day. Some days I’m okay, and have everything together. Other days, I’m really thankful for the fact that my kids like Teletubbies and Disney Jr.

Scarlett is time-intensive, people. I am confident enough in my parenting to admit that I’m not doing everything for her that I’m supposed to be, at least not every day. If I did, I wouldn’t have any time for anyone other than Scarlett. There’s some days where S only gets three joint compression pumps instead of five. There’s days where her massages are really short, and some where there’s none at all. I do the best I can, but there has to be some kind of balance.

I love my girl. I try to be the best parent I can be to her (and to her siblings). But man, it is exhausting. It is exhausting enough that I was kindly reminded at my son’s ER follow-up appointment that I had neglected to get him in for his 4 year check up. I felt SO guilty about that (although they repeatedly reassured me that I’m still well within the no-guilt window). While he’s now on the schedule, it’s just an example of how many things I have on my plate…because I am not a miss-a-doctor’s-appointment kind of person.

So when my mother-in-law asked how I was, I was honest, and told her that I was tired of holding up our world. I do it because that’s my job, but I won’t lie, it sure would be nice to pass it off to someone else and every now and then.

Never have I been so thankful for vanilla almond milk

Scarlett’s nickname has always been fluid- it seems to change every other week. Sometimes it’s Yej Mana Jun (short for Yej Mana Junior), sometimes it’s just Jun, sometimes Jun-Jun…but the one that’s stuck around the longest is “Fat Baby”. Scarlett has always been fat. I’m talking the ultra chubby legs, and clothes two-sizes-too-big kind of fat. She was born at 7 pounds 9 ounces, but very quickly shot up to the 95th percentile, where she had happily stayed, until about 6 months ago.

Shortly around the time she turned one, we went in to the doctor because she wasn’t eating, so I thought she may have an ear infection. She didn’t, but the doctor told me that she had lost a little weight, so she wanted to keep an eye on her. We went in for her 12 month appointment, and she’d lost a little more. At that appointment, the doctor decided that Scarlett needed to be evaluated by the early childhood intervention people, which is how this whole ball got rolling. No real mention was made about her weight, other than to try a little harder to get her off breast milk as my supply was waning (*insert annoyed eye roll here*) and to encourage the eating of more table food. Okay, fine. Things weren’t bad enough at that point that I felt overly concerned.

HOWEVER.

More time passed…and my supply continued to wane. No matter how much water I drank or how often I latched her, my supply still continued to drop. She refused any other liquid. I noticed that she wasn’t really into table foods, she wouldn’t really eat them unless you fed them to her. She would only poop once every 4 or 5 days, and when she did, it was traumatizing for her. She would just sit and shake, and scream this horrible high pitched wail until she was done. It was heartbreaking. I took her back in to the doctor, who recommended her for a feeding evaluation. We got in, and Scarlett (of course) performed much better than she did at home. They recommended her for individual therapy, and said that they didn’t anticipate her needing much before she was on track. Finally, some good news.

BUT WAIT.

While waiting for the feeding therapist, we got in with an occupational therapist, who spends about half of the sessions working on different sensory stuff, and the other half working on feeding techniques. In one of our most recent sessions, she told me that she was recommending extending therapy, because there was no way Scarlett would catch up in the amount of time we had had originally thought. And thus began one of the most stressful, heartbreaking, and frustrating weeks of my mama life.

At this point (we’re up to last week), Scarlett was still accepting no liquids other than breastmilk. They told us not to give her any solids other than meltable solids (which basically has no caloric value). She still only ate the purees (and at this point, was up to 6-8 per day, which is hard on the pocketbook, y’all). We took her in on Monday for her Lyme appointment, where they measured her at 19.5 pounds (6 months ago, she was at 21.5). Tuesday, I went in for her 15 month checkup, and they measured her at 20.5, although she was wiggling at grabbing at me the whole time…so I tend to think that the 19.5 is more accurate.

THUS BEGAN THE WORST PEDIATRIC APPOINTMENT OF ALL TIME.

Y’all, taking a baby to the doctor is a nightmare. They do everything babies hate- mess with their feet, hands, pull them away from mom…but for an SPD baby, this is a whole new ball game. Scarlett screamed the. whole. time. Not just a little outburst here and there…full on shrieking screams. It was a nightmare. Over S’ screams, I asked the doctor if they would give us a formal SPD diagnosis, instead of the informal one given by her therapists. She looked at me a bit confused, and told me that there’s nothing she can do, and that she doesn’t make those kinds of diagnoses. Um, what? Yes, actually, that is your job. You’re the doctor, you are the one who determines what’s wrong with my child. I should not be the one telling you what’s wrong with my child, you should be the one telling me. I understand that she’s human and this may be something new, but you don’t tell a mama of a baby that she’s struggling to feed that there’s nothing you can do. She didn’t even ask what Scarlett’s symptoms were. In terms of weight loss, she told me that there was also nothing that she could do there, and to “wait for the feeding therapist” (we’ve already been waiting a month at this point).

I’m going to level with you here. I left that appointment more angry, frustrated, and discouraged than I have ever been. I drove home holding back tears, and as soon as my mom called, I’m not going to lie– I got a little bit hysterical (bless her heart, my mom is such a darling…she just listened and told me to calm down and take it one day at a time). We made a plan (aka: she made a plan and I did a lot of sniffling and said I’d go buy S some juices to try ), and I spent the rest of my day trying to make Jaxon and Cora forget how horrible of a mother I had been all morning.

The following day, Wednesday, we saw Scarlett’s behavioral therapist. I basically spent the entire session telling her how maddening and discouraging the doctors appointment had been the day before. She listened, and then told me that for as much as she wishes she could tell me otherwise, this wasn’t the first time she’d heard a story like mine, and that this is unfortunately how our system treats the elderly and people with special needs. She said that basically until Scarlett starts losing significant amount of weight and is labeled failure to thrive, nothing will be done for her.

I cannot possibly convey to you the depth of my frustration and heartbreak in that moment. How wrong is that? Why is it that the fact that my child seems to be holding her weight makes it so that she falls through the cracks? How much weight does she need to lose (or how long does she need to remain steady) before her doctor would take this seriously?

At this point, I think my family made it known to my family the seriousness of Scarlett’s feeding situation, and the texts, calls, and messages of prayers and support came flooding in. People, I don’t know how people make it without the support system of the church, I truly do not. There have been several times where the prayers and support of people in the church were the only things I had to get me through, and this has been no exception. I cannot put into words how much all of the prayers and messages of support meant to Sean and me.

Then, yesterday. We’ve been trying (and failing) for the last few days to collect a urine sample for Scarlett’s formal Lyme test. We’d put the collector on her yesterday morning, and she had gone 6 hours with zero urine output, so I was starting to get a little desperate (for any sign of urine in general, not just for the test). So, in a last ditch effort, I laid Scarlett down on the floor, and syringe-d in some vanilla almond milk. To my complete shock, she actually drank it. I think I almost cried, people. I was so ecstatic! And it wasn’t a fluke- she kept drinking! So I called my mom on FaceTime, and didn’t tell her why…I just flipped the camera around and showed her Scarlett going to town on the almond milk, and I think she was just as excited as I was. So, after a little bit of showing off her new trick to Grandma, Bapa, and Uncle Paul and Aunt Aimee, we got off FaceTime and let her play for a bit. We tried again a little while later, and she drank it again! And not just a little bit, folks, a TON. Overall, she had somewhere around a cup or two of almond milk, which is basically as close to a miracle as us modern humans can get.

She drank even more today, so I know that I’ve finally found something she’ll drink. Is it nutritious? Not particularly, but hey, if the feeding therapist can give her white cheddar Cheeto puffs, I can give her vanilla almond milk.

Now just to get that urine sample…

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Courage, dear heart

The time has come to revive the blog! Hopefully. I always have good intentions, and then they don’t every come to fruition. But for now, let’s just roll with it.

“Courage, dear heart”.

I wonder if C.S. Lewis sat down at his desk and realized the impact that those words had the potential to have. Regardless, I’m pretty sure that those three words are going to be my life motto for a while.

To play catch up, we are now a family of five. Our youngest, Scarlett, is a beautiful, sweet, mullet-haired 15 month old, who has just recently been diagnosed with two Lyme co-infections, Babesia and Bartonella (courtesy of my active Lyme during her pregnancy), and Sensory Processing Disorder (SPD). When you’re pregnant and thinking about what your life will look like once that sweet little baby arrives, this isn’t what you anticipate. You look forward to watching your baby grow, change, and develop. You don’t anticipate an overwhelming amount of weekly therapy, and watching your child halt in every developmental area. But such is life for us right now, and I don’t think my mama heart has ever been so worried about the well-being of any of my children.

We started to notice things with Scarlett (the fear of water, the fear of loud/sudden noises, lack of speech, etc), and I just assumed she was just a weird baby and she’d outgrow it all. We went to her 12 month checkup, and I found myself checking “no” on a lot of the developmental checklist questions. She hadn’t gained any weight, and had actually been losing weight. “We’ll keep an eye on it”, is all they said. They referred us out to the early intervention people, and got a developmental evaluation set up. Not entirely helpful on the part of the doctor’s office, but hey, at least we’re getting in touch with the right people. Scarlett was delayed enough to qualify for services, but no one seemed overly concerned. Weeks started to go by, and the little things were starting to pile up. She still was not talking. She didn’t babble. She didn’t like her hands or feet touched. She wouldn’t drink liquids, and my milk supply was dropping. She didn’t walk. She wasn’t eating well. All of a sudden, life has gone from the “normal” chaos of having three kids under three, to the chaos of constant therapy and evaluations, all alongside the normal chaotic life of three kids now under four.

And this is where we currently are. Our life has gone from being normal to the life of a family with a special needs child, all within the span of a couple of weeks. Eventually, I’ll write about how that feels, but I’m not ready for that just yet.

In the meantime, courage, dear heart. This journey is just beginning.