Endocrine Update

Daylon's endocrinology appointment went wonderful. He was 33.25 pounds and 37.25 inches. He grew 1 inch and gained 1.25 pounds. He is now consistently at the 3rd to 10th percentile and was below the first percentile before starting growth hormone a year and a half ago.

We talked about the use of growth hormone with his sleep apnea and there is not a lot of research out there as far as what those risks impose. We do know that there have been 4 or 5 deaths reported, but those children had very low muscle tone, were obese, and had Prader-Willi Syndrome. Daylon has none of those things so the doctor does not feel he is at risk.

That being said he does feel that it is reasonable to stop his growth hormone to see how he grows without it. We are to use up our current supply, which is about a month's worth, and then stop. His height growth will be reassessed in six months to see how he is doing.

C-PAP

On December 14th, we were able to take Daylon over to the Sleep Center in the afternoon to see if we could get him fit for a mask and take a nap.

We got him set up with a mask, and he fell asleep for an hour with it on. During that hour, they adjusted the airflow to where they needed it to be to keep his airway open. They found that he needed it at 9. So, once we had that figured out we were able to pick up our CPAP machine the morning of the 15th.

He has done really well with it. At one point, we had him on a mask that looked very similar to a fireman's mask. He loved the thought of it, but had trouble keeping it on because it was so bulky.

I talked to his respiratory therapist today. They had looked over his downloads from the last two weeks, and found that he was still having events with the flow set at 9, so they wanted to set his machine to auto. We went ahead and set it up on auto this afternoon, with it set on auto it will start at 9 and automatically adjust to where he needs it. I have been watching it this evening to see where it is and it has been ranging anywhere from 9 to 14.2. This just amazes me considering I know adults who are on 12.

December 14th Appointment with ENT

We had our appointment with ENT and discussed the surgery to have new tubes placed and also to have his airway evaluated. That surgery is scheduled for January 12th. We will not have a time, until the day before when I call. YAY!!!

Sleep Study Results

All I can say is WOW!! and I am soo glad I followed my "Mommy Instincts" on this.

In 452 minutes of sleep 304 episodes of apnea were scored, 288 were central (meaning there was no effort), 7 were obstructive. Another 158 episodes of obstructive hypopnea were identified. Hypopnea is when there is a 30-90% reduction in airflow. The overall AHI (apnea-hypopnea index) was 52. AHI is used to determine the severity of sleep apnea 5-15 is mild, 15-30 is moderate, and above 30 is severe.

Daylon's oxygen saturation dropped significantly as low as 55% at one point. His oxygen level was below 90% for 20% of the study.

Diagnosis:

Obstructive Sleep Apnea, Central Sleep Apnea, and Hypoxemia

Plan:

Have airway reassessed by ENT, and CPAP would also be a possibility.

We are not able to see ENT until December 14th, but saw Dr. T today. He does not feel that ENT is going to find anything that they can fix, so he wants to get Daylon on a CPAP if at all possible. We tried a little bit today, but he wasn't having it, so we will do an overnight CPAP titration study on January 4th.

Sleep apnea definition: http://www.mayoclinic.com/health/sleep-apnea/DS00148/METHOD=print

Hypoxemia: http://www.mayoclinic.com/health/hypoxemia/MY00219

November 10th - Sleep Study

We went in for our sleep study last night. It took about 30 minutes or so to get him all hooked up to the machines. Within half an hour he was asleep and five minutes later he was snoring.

When our techinician came in this morning I made a comment that he would do his thing as soon as we took all of the wires off, she asked me if he does that every night, and when I said yes, she said he did it last night too. She also made the comment that if they weren't taking me seriously before that they would be now. She, of course, could not tell me a whole lot, but now I am more nervous than ever to get those results.

Running With Luci

Hi Everyone,

I wanted to pass on a message from our friend George. We were blessed enough to meet George, Mike, Jolie, and Luci, along with George's parents, while at the MAGIC Convention in July of 2010.

Aunt Anita and I sat in the front row in George's amazing testimony "It's Okay to Dream", where he told us his story of meeting Luci, running his first marathon, and tackling the Sahara Race. George is an inspiration to us all and to know that 5 more men have joined his cause to help raise money for MAGIC is wonderful!!

Dear Friends,

As many of you are aware…this November 20th...6 of us will be embarking on a 155-mile quest through the Himalayan Mountains in Nepal to directly support children with growth related disorders. This is very personal to me as my goddaughter Luci Horvath was born with panhypopituitarism. Every day is a fight for Luci but she is one amazingly strong and courageous little girl that inspires us all.

To make a permanent and lasting difference we have founded RWL (www.runningwithluci.org), a team of amateur endurance athletes dedicated to supporting Luci and thousands of other children across the country suffering from similar conditions. There is a lot misinformation in the medical community and the media and these families often face significant hurdles in getting proper treatment for these children. Fortunately there is an organization called The MAGICFoundation that plays a major role helping these families. RWL will be raising money for the MAGICFoundation to help these families deal with the day-to-day struggles. We have also been shooting a documentary over the course of the year to bring broad attention to these disorders.

I'm very proud of the incredible dedication and courage of my five teammates. This is a significant challenge for even the most professional of runners…let alone a group of backyard athletes like ourselves. I humbly ask that you support us in anyway that you can…either by following us on facebook, spreading the story, sending us words of encouragement or making a monetary contribution. It all goes a long way and will immensely help my five teammates as they attempt to tackle their first major ultramarathon. As always…thank you so much for any and all support. We (and more importantly the children) greatly appreciate it. GC.

Donate Link:
https://www.magicfoundation.org/www/docs/1008.1886/

Like us on facebook:
www.facebook.com/RWLuci

Documentary Trailer:
http://vimeo.com/26934026

Learn more about MAGIC:
http://www.magicfoundation.org/www

Race Website:
http://www.4deserts.com/beyond/nepal/

George G. Chmiel

October Appointment with ENT

October 7th we met with ENT to talk about Daylon's snoring and his hearing. We were not able to complete his last hearing test because the right tube appears to be coming out.

ENT did confirm that one of the tubes is working it's way out and we will need to put new tubes in, but at this point it is too soon to do anything about it.

I showed him the video of Daylon's breathing while he was sleeping and he feels that it is positional and wants me to take his pillow away and see if that makes a difference. I feel that it does not matter what position he is in and called Dr. C to see if he could get us in for a sleep study. He is going to see what all that entails and get that set up for us.

Dr. C called me back and we are set up for a tour of the Sleep Center on October 24th. We will see where he will sleep and what all they have to hook him up to for the study.