Spencer's initial Complete Blood Count (CBC) results never arrived from the hospital. Our pediatrician will now contact the hospital to request them. They should have arrive weeks ago! It is now time for a follow-up CBC, which he ordered today. This will be blood counts, but he'll also get thyroid and electrolyte results. No, I am not sure what all we're watching for here. I do, however, trust our pediatrician to stay on top of things. He has several patients with Down syndrome and is also a Medical Home doctor.
I had read and heard warnings against holding babies with Down syndrome in a "frog leg" position. The issue is low muscle tone, which Spencer doesn't have. Most carriers hold babies in this position and it even includes spread legged on your hip. So I asked the pediatrician today and he checked Spencer's hips more closely, saying it can have to do with the actual joints, not just muscle tone. He thinks Spencer's hips are fine, but that there might be a problem there. He is requesting an Ultrasound of the hips, but there is apparently an age cut off for that. if we're too late, then Spencer will have an x-ray instead.
A new friend with a baby just a few weeks older that Spencer just dealt with pneumonia. Her daughter has been aspirating milk since birth and they didn't catch it until 12 weeks. She suffers from reflux-induced sleep apnea and other sleep apnea as well. This has made me paranoid. Spencer also chokes at least once during nearly every feeding. Sometimes he chokes when he isn't eating, even in his sleep. He makes this squeaky gasp and arches his back.
 I usually prop Spencer up in my lap for bottle feeding. |
Our pediatrician says this movement is common among babies with reflux. He is ordering a swallow study. This will involve a Speech Therapist checking his swallow, but also a radiologist testing for reflux and aspiration during and after feeding. Spencer can't eat for 3 hours before the testing. I scheduled it for early in the morning so as to hopefully minimize the waking time with a hungry baby.
I also asked about a pronounced blue vein on the right side of Spencer's head. It is nothing. Our doctor may order private physical therapy after our 4 month visit, depending on Spencer's needs at that time. We have a state agency coming for in-home visits now and giving us homework. Our doctor will order more if we need it.
As we loaded back into our truck, I felt... I felt like someone that just bought a new car and has to take it to the shop for numerous mechanical issues. It isn't anything we can't handle, just a minor inconvenience to make extra trips to doctors. You love your new car and wouldn't trade it in for another model, it just requires a little extra TLC than what you might have chosen otherwise.
I love our son dearly and do not feel overwhelmed at all by the extra appointments. This might be different, though, if I had to take a job. I am so thankful that I can focus my energy on my children and their health.
