Even better news is that in the three months since our last visit Daylon has gone from 33 1/4 inches to 34 3/8 inches and gained a pound, up to 26 pounds. With this growth he has officially made it onto the charts!! He is now between the 1st and 3rd percentile!!
Dr. S. is very satisfied with his growth and has increased his growth hormone dosage from 0.6 mg daily to 0.7 mg daily.
Most of the time he does really well with his shots. Once in a while he pitches a tiny fit, but gets over it quickly.
In other news. Daylon was tested to see where he was at developmentally. Depending on where he scored he would qualify for the special needs preschool. We will get the full results on Monday, but we did find out that he qualifies in speech and is close to qualifying in a couple of other areas. So, he still has quite a bit of developmental delay in speech and some delay in other areas. I'm not sure yet what areas. I will fill you all in after our meeting on Monday.
In mid-April we had Daylon's hearing tested and both ears were refer. He failed for sure in his left ear and his right ear said pass on some and refer on others. So, we had an appointment with the PA in our ENT's office last week. She said that it looks like the tube in the left ear is out and laying sideways in the ear canal, leaning on the ear drum. She said that he also has fluid behind that ear drum too, and is unsure what Dr. B will decide to do given D's history. She is having us try Nasonex nasal spray, until we see his regular ENT tomorrow. I have a feeling that we will find out tomorrow that he is going to need another set of tubes, but we will see. I guess we never know for sure, until after we see him.
We plan to see genetics again in June to look into further testing. With his growth problems, blood disorder, ear/hearing problems, sensory processing disorder, developmental delays and other issues, we would like to find out why and if any other problems could arise later.
Update on the labs drawn in regards to the murmur. All labs came back normal, for the most part. He does still have neutropenia, but is not anemic. Dr. C does feel that the murmur is just an innocent murmur. Hopefully when we see him this month for his well child check up, we will find out more on the murmur, and if not there, possibly from genetics.
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