Doctor's Appointment Today

We went in to see Daylon's pediatrician today to get the labs drawn for his endocrinology appointment on the 15th of April. He is 33 1/2 inches and 25lbs. 4oz.
His doctor decided to check his ears and look him over. His ears looked good, although the left one has a bit of dried wax in it. In the process he found a murmur. D has never had a murmur before, but has always turned blue around his lips when crying and then has the reflex anoxic seizures. His doctor thinks that with the growth he may be anemic and is doing a blood count, etc. So, now we wait. I asked him if the murmur was something that could have been hiding and he told me no that it's either loud enough to be heard or it isn't there. Just wanted to share and ask that you keep Daylon in your prayers, that this is just an innocent murmur and not one revealing a heart problem.

Checkup with Dr. C.

We took Daylon to the doctor today to see if his ears were infected again or what the deal was, because he is pulling on them so much. His ears were clear, so apparently no real reason for him to be pulling on his ears.

While we were there Dr. C asked what Dr. S thought of Daylon and if there was anything new going on. I told him what Dr. S. said about wondering if growth hormone is the right medication for these kids that are born small, or if increlex (IGF-1) is the better medication, and that he wants to keep him on the growth hormone for a year to see how he responds to it before deciding if he should change him to the other medication. Dr. C's response was, "Well that's something new." LOL!!

Exciting News!!

I know all of you have heard me talk about RSS or Russell Silver Syndrome and how it is very similar to Daylon's diagnosis. They have a lot of the same symptoms and are treated the same.
Mystery Diagnosis just did a segment on RSS!!! How exciting!! We watched it last night and I teared up through the entire thing because this family's story is so similar to ours. Daylon & I also had the chance to meet the Getch Family (the family that this segment is about) at The MAGIC Convention last July!! They are such amazing people.
The episode is airing again on Sunday at 10:00 AM, MDT on the OWN Network. Just wanted to give you a heads up and ask that you watch it!!

Thank you & love you tons!!

Jean

A Little News From Here

The last two weeks have been pretty busy!
Daylon had his followup appointment with the ENT and the appointment with our new Endocrinologist. The ENT appointment went well. His ears are looking great!! YAY!! One less worry. He is fighting a bit of a cold now, but with the doctor's recommendation with the Neosporin, we will hopefully be able to keep it from turning into an ear infection.

The new Endocrinologist is GREAT!!! We are so happy with him. He validated my concerns and was very professional about everything. He commented that he was always curious whether growth hormone is the best medicine for these kids that are born small, but he wants to give Daylon a year on the growth hormone before we decide to try an alternative treatment(possibly Increlex). Right now, Daylon is still following about the same curve he was before we started the growth hormone, so I guess time will tell. He is up to 33.25 inches long and 25 pounds, which is about 3 pounds heavier and 2.75 inches taller than when we saw Dr. Harbison at convention in July. He changed Daylon's dose from 0.5 mg six times a week to 0.6 mg daily and will see him again in April. He also ordered a few tests to be run before our next visit. The tests include IGF-1, IGFBP3, a bone-age x-ray and thyroid function, which he requested be sent to a lab in CA, because they give much more accurate results than the lab that was previously used.

We are still seeing a speech therapist weekly to work on Daylon's speech and thankfully, he is starting to talk much more than before. We are also seeing an occupational therapist for his sensory processing issues and they seem to be getting better, except when he is tired. His weighted blanket that I made him works wonders. You would not believe the difference it makes in him unless you saw it for yourself! A wonderful website to reference on Sensory Processing Disorder is www.sensory-processing-disorder.com. It has a checklist and several other resources about it. Interesting reading.

Next week we have our meeting with the school district and STEP to set up testing to transition from the services he's currently getting to Part B which, if he qualifies, would put him in the 3 year-old special needs preschool. So, all three of my babies may be in school next fall.


Thank you all for your support.

New Endocrinologist

I called our new endocrinologist's office to get his take on waiting until January to see Daylon. He was not okay with that, he actually wanted to see him this month, but there was no way we could make it to Salt Lake. We had talked about going to Salt Lake in December, but our insurance would not cover him in Salt Lake, it will here, but not there. So, we will be going to Missoula sometime the week of January 10th-14th. I got the intake paperwork from the new doctor and my goodness it covers things that previous specialists have never asked before. All I can say is January should prove interesting.
I have also been asked by the SGA division coordinator for MAGIC to write our story for the next newsletter. I will be busy doing that for a while. Trying to put the last two and a half, almost three years on paper, should prove interesting. LOL!!

Update on Ears & New Doc

We had Daylon's ENT appointment today. His right ear looks great, but the left is still causing problems. It is still draining quite a bit so we are to continue with the ear drops 3 drops, 3 times a day until they stop draining and then continue for a week after that. He also made a recommendation that I had never heard of before, with him having such a yucky stuffy nose and draining green stuff, he wants us to use a tiny bit of neosporin inside both nostrils once a day for a month. He said that the vaseline will melt and the oil will carry the antibiotic through the sinus cavities & down the eustacian tubes, apparently this helps a lot with some kids with the infections there. He wants to try to keep him off all of the oral antibiotics as much as possible and wants to see him again in January, unless there are more issues then he wants to see him before then.

Dr. C called me this morning to ask about the endocrinology situation. He wanted to know if MAGIC knew of any endos in our area that follow the same protocol as Dr. H. I told him that I had made a few calls to the two doctors that come to Montana and that it sounds like Dr. S follows the same protocol. He let me know that they would give me a referral to any doctor that I wanted to see, and agreed to send a referral to Dr. S. He also commented that he did not know that Dr. S still came to Montana, so it sounds like he may be familiar with him. So hopefully we will be going to Missoula in January to see him, unless he wants to see us sooner than that, then we will have to go to Utah to see him.

Pictures that I promised you from D's surgery

Waiting for surgery and playing with the camera they gave him.

The tubes that were taken out of D's ears.

Another Shot of the tubes.

Playing with his gloves, hanging out in pre-op.

What Daddy & Sister were doing while we waited.

Just watching a little TV.