Tuesday, February 28, 2012

Spencer's Health

Spencer had his 2 month well child check up today. He is 11½ pounds already, which has him in the 90th percentile for size (on the Down syndrome growth chart)! His head circumference is 38cm, keeping him at a proper curve just above the 50th percentile. he has grown to 23 inches tall! This is also well within the normal curve.

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.

SpencerI 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.


  1. Your guy is a cutie and your attention and care will make all the difference in his well being.

  2. I'm here to request more pictures of your cute baby. Seriously, I turn into a big pile of "awww...look!" every time I see him.

    You're doing great work, Momma.

  3. Your son is adorable, and I think he looks a lot like your younger daughter. It sounds like you are enjoying him and ready to meet any challenges he might face.

  4. Oh, how I remember all the extra appointments.

    We gave our doctor a copy of the health guidelines from the National Down Syndrome Society. We also trust our doctor very much, and there are others with Ds that he sees, but the chart has been helpful so none of us forget what needs to be done... http://www.ndss.org/index.php?option=com_content&view=article&id=70&Itemid=139&limitstart=2

    This article helped me understand the low muscle tone thing much better. Levi was never a "floppy" baby either. This is the best article I've found on hypotonia. Hope you find it useful...http://www.cdadc.com/ds/hypotonia.htm

  5. Spencer is adorable. Btw, with both of my boys there were pronounced blue veins on their forehead areas and also side of the head. It was faint, but still obvious. With both of them it disappeared before age 2. Perhaps even earlier, but I can say with surety before 2.


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