At the urging of our pediatrician we took Sabine to a Pediatric Endocrinologist at the end of October to consult on her stalling growth and small size. I really expected this to yield nothing more than a copay and insurance battle. I really expected to walk away able to tell everyone that my small kid is just fine. That did not happen.
The doctor was super sweet and down-to-earth. She looked Sabine over and then looked over her growth history. She took our familial histories and our histories. She noted my autoimmune problems. After an hour together she explained that yes, Sabine’s growth is slowing much more than normal. She agreed that she is small for her age but, and this is a big but, she is proportional. Sabine is not skinny. Her limbs are in proportion to the rest of her body. She is alert, curious and hitting milestones, although her milestones tend to hit at the later end of the spectrum.
Based on this, our histories and the fact that both the Professor and I are taller than average she recommended a series of basic blood tests. These looked at general organ function, thyroid, blood panels, and a few base autoimmune screens, including celiacs. She also recommended a bone age x-ray to make sure her bones were the appropriate age.
It took four weeks to get all this done and then wait for results. The doctor called this week and explained that all the preliminary blood work and autoimmune tests were normal, thankfully. The bone age, however, is not normal. Sabine’s bones are that of a 6 month old. She is 16, almost 17 months. This, the doctor said, is almost certainly why she is not walking. It also means that she is not growing bone at the proper rate, which is something that needs to be investigated further. The doctor then spent two days consulting with a team of specialists to get multiple opinions on how we proceed.
She called back on Friday and said all doctors agreed we need to move fast and that we should start with the least invasive tests first. We’ll be doing more blood work looking at her calcium, folate, vitamin D and vitamin B levels along with doing a genetic karyotype. The doctor assured me this is nothing we have done. This is not that my milk is not wholesome enough (Sabine was thriving the first four months of her life, then things started to taper off.) This has nothing to do with the fact that we don’t feed her junk food or highly processed “baby snacks.” This has nothing to do with her being a picky eater (she eats a wholesome diet of extremely bland and boring food). This is something that Sabine was born with and we will get to the bottom of it.
I am finding that much like infertility, the bulk of the world just sucks at supporting you when your child might be sick. They are either harsh and criticize the mother, calling her parenting choices into question, or they blow it off saying that the child “will be just fine.” I’ve had a really hard time finding the kind of support I need – a shoulder to cry on and an ear to listen. I need someone to listen when I need to vent about how scary this is. I don’t need an unqualified person to recommend random cures.
So here I am, back in my cozy little bubble of IFers who understand heart break and struggle more than most. I’ve made it to the other side and look at that, there are still more two week waits. There is still more stressful news to come over the telephone. There are still more doctors and needles and invasive tests but this time I am not the one who bears the brunt of it. Now it is my sweet miracle baby. It seems so maddeningly unfair.
(There are a handful of people reading this who know me in real life (thank you LG, MC, FP, KB and NF for being so supportive!) The Professor and I have decided that we are no longer telling people about Sabine’s medical issues as too often we walk away hurt or more stressed. If you want to offer that shoulder and a sincere and open ear please let me know and I will come to you when I need support. Otherwise, we are going about our days and enjoying this tiny and adorable kid. My new response when strangers remark on how small Sabine is is to simply say “good things come in small packages” and leave it at that. Finally, I might come here to talk about how I am feeling about everything. Scrambled Eggs has been my safe space for a long time. Sometimes these posts will be password protected. If you see a password protected post pop up and are one of my regular, long time readers (you know who you are!) please email and I’ll share the password.)
You know what I am doing in this picture? Aside from nursing in front of my computer screen? I am typing up edits to a freelance client. I am so, ridiculously thankful to have found a bit of part-time freelance work writing and editing for a company a former colleague connected me with. It feels so good to create, to edit and to work with a team! So good that I don’t even mind typing things one-handed while my kid has her afternoon warm milk!