July 9 Update
Weight: 5.33 Kg (11 lbs 12 oz)
Height: 58 cm (22.83 in)
Matthew had two big appointments this week. One was at Cranial Technologies for his initial evaluation for a DOC Band (helmet). The other was back at Primary Children’s Hospital with a pulmonologist.
Treatment was recommended by the clinician at Cranial Technologies, which wasn’t surprising given Matthew’s medical history. He has “severe brachycephaly and right plagiocephaly related to his extended time in the NICU and positional preference in early infancy. The DOC Band treatment will address skull base and cranial vault asymmetry as well as [help him] gain occipital length and rounding.” Here are a couple of 3D pics that compare Matthew’s head shape to a normal head shape and then a pic that shows the general scale of mild-severe brachycephaly/plagiocephaly.
While Matthew (5.25 months) is in the optimal age range for treatment, his adjusted age is actually only 2.75 months, and he doesn’t quite have the neck strength to hold up his head for the more detailed 3D pics they need to create his custom Band. 😮💨 So they’re going to give him a few more weeks while we continue focusing on tummy time at home. Then they’ll take the pics and have the Band created. When it’s ready, we will go in for his custom fit appointment and then once a week after that for them to adjust the Band as needed. The clinician yesterday said treatment time could take 4.5 months or so and that he’ll probably need two Bands since he will likely outgrow the first before reaching the optimal outcome.
His pulmonology appointment was basically just a follow up from the NICU. They weighed and measured him and he’s falling in the 6% for preterm babies which is small obviously, but she said his growth looked good and she wasn’t concerned. He was really small for a 30 week baby because of his growth restriction in the womb, so it’s not surprising that he’s still on the small side even among other preemies.
As for his actual pulmonological (lung/respiratory) issues… he was diagnosed with Mild/Moderate Bronchopulmonary Displasia (BPD) while in the NICU, and it’s not a condition that really goes away. It will always be a part of him and could cause health problems for the rest of his life potentially. But as of right now, it is considered mild, and he is looking and sounding good. We will continue working on weaning him off oxygen and when he can go all day without it consistently, we will go in for an overnight oximetry study which will monitor his desaturations more closely…how frequent he has them and how long they last. If that study is normal, he can stop oxygen completely. If not, he may have to have a sleep study to test for obstructive sleep apnea. He is more at risk for this because of his BPD and also his Trisomy 21.
As he continues to grow and gain more weight, his lungs will continue to mature which will help with his respiratory issues as well as his eating and even sleeping (but honestly we haven’t noticed any problems there- he’s always been a great sleeper…so hopefully that will continue even without any oxygen therapy).
It’s amazing to see how everything in our body is connected.
