Monday, May 30, 2011

Update from Daylon's Surgery & Well Child Appointment

Daylon had his surgery on the 19th for new tubes. It went extremely well!! No blood sugar issues, and came out of anesthesia smiling. Such a wonderful sight!! I did ask Dr. B about the breathing/snoring Daylon has been doing at night, and he said that adenoids can grow back and that may be the problem, so we will keep an eye on that.

On the 20th Daylon had his 3 year old well child visit. He was 26 pounds 2 ounces and 34.5 inches long!! He has made it onto the charts! His weight is right on the 3rd percentile, height is just below the 3rd percentile, and his head circumference is in the 10th percentile at 47cm. He looked in his ears and commented that they usually have blood clots around where the tubes are placed, especially the day after surgery, and he did not see any. He said that Dr. B did an amazing job!!

At our well child appointment, we found out that Daylon's murmur that was heard in March has changed. He commented that innocent murmurs are high pitched and the murmur he heard on the 20th was not at all what he was expecting to hear based on his notes from his last visit. He said that innocent murmurs don't change and he wants us to take Daylon to a cardiologist.

We will see Cardiology tomorrow morning. Hoping and praying for answers!!

Thank you all for your support.

Monday, May 9, 2011

Update from our ENT Appt.

We had our appointment with the ENT on Friday.
Daylon definitely needs new tubes, so he is scheduled for surgery on May 19th. The plan is to use a different kind of tube this time, called a Touma T-Tube. They are shaped differently and should last longer. Apparently they work similar to a toggle bolt, anyway that's how he explained it to me.
I discussed my concerns about Daylon's blood sugars while fasting and he said that we would monitor it before and after surgery. I called his endocrinologist's office today to see what he wants us to do for the surgery. Daylon's blood sugars for his last surgery were 80-something pre-op and 201 post-op, so I want his take on what that means and what he wants us to do to prevent the high. Unfortunately when I called Dr. S' office today, he was out of the office and so was his nurse, so I have to call back tomorrow. The recommendations from Dr. H are that with any surgery for an SGA child to run D-10 IV, but when I tried to get them to do that for the last surgery they wouldn't because it was such a short surgery. My hope is that I can get the endocrinologist in my corner on this one and push for the IV.

Today we had Daylon's IEP meeting for preschool in the fall. We went over his testing results and the only area that he isn't low in is Motor Skills. He is -2.47 standard deviations from the standardized score in Communication, -1.47 in Adaptive, -1.40 in Personal-Social, and -1.33 in Cognitive, and +0.47 in Motor Skills. In order to qualify for Special Education programs, including preschool, he had to be -2 standard deviations in at least one area.
What do all these numbers mean? Essentially in Communication he is scoring at a 14 - 23 month old level, Adaptive is at a 21 month old level, Personal-Social he is scoring at a 22-28 month old level, Cognitive is at a 24-27 month level, and Motor Skills are at a 34-41 month old level. He was 35 months old at the time of testing so that gives you an idea of the amount of delay he has.

Thursday, May 5, 2011

Latest Endocrinology Appointment & Other News

Our last appointment in Missoula went great!! All of Daylon's labs are looking good, and his bone age is appropriate. All great news!!
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.