A Crazy Busy Month...

Just wanted to give you all a quick update. It has been and continues to be an extremely busy month for us.

On the 6th, we took Daylon in to the pediatrician to see if we could get into an allergist. He was having a weird reaction (almost looked like hives) anywhere his bm touched and some other GI things (which he has always had) that made us think of allergies or GI issues. She referred us to the allergist.

We saw the allergist on the 11th, he did not feel that it was allergy related but went ahead and tested him for 9 food allergies and 16 environmental allergies. All came back negative but he felt that with D's constant runny nose and occasional dry cough we should treat it and see if we can get that resolved. So, he prescribed a daily dose of Claritin, and an albuterol inhaler for the days he has the cough, and referred him to a Gastroenterologist to go over the GI issues. We were very excited to see the GI, because it is something that we felt should be done also.

We saw the GI specialist on the 15th, and she felt that Daylon has enough going on that we should run some other tests that have not been run before. So, on the 25th Daylon will have a Gastric Emptying Study, on the 27th he will have an Endoscopy, and on the 29th he will have a sweat test to rule out Cystic Fibrosis. In the meantime, she has put him on 2 boxes of Boost a day.

Daylon had his Endocrinology appointment on Thursday and he is doing GREAT!! He was 34 7/8 inches and 29 pounds. His height may have been a little off because he was not cooperating well, but this puts him between the 1st and 3rd percentile for height and 25th percentile for weight. I asked our endo about his weight, because of the GI's concerns and he told me that we could give him the Boost on the days when "his attitude is bigger than he is and his halo turns into horns (when he refuses to eat) otherwise consider him boosted." We also asked how long Daylon will need the growth hormone shots and what would happen if we took him off of them now. He said that Daylon will be on the shots for another 10-12 years and that if we were to stop in the near future it would be like going from here to Chicago and stopping in Denver, on the right track but we have to keep going to reach our final destination. So it looks like we have years of this ahead of us. He did say that he doesn't think Daylon's other issues are related to the growth hormone axis deficiency.

On the 7th we did hear back on part of the genetic testing that he had done. His testing for RSS came back normal, which we knew would most likely be the case. Now, we are just waiting on the Microarray results. Hopefully we will get those soon.

Thankfully Auntie N. came back from Missoula with me, so she can watch the girls while Daylon and I are doing his testing this week. It will be a very busy week for us.

Thank you all for your support, it means the world to us!!!

The Waiting Game Begins Again.

Last week we had our genetics appointment. Not a whole lot to report yet, other than that Daylon is on the 5th percentile for both height and weight now, and his head circumference is in the 10th percentile.

There are some specific tests that they are running, most of which are too technical and involved to go into at this point. If the tests reveal a genetic issue, I'll try to explain that specific issue in a future blog.

They did say that it is possible that the neutropenia and short stature are not related at all and that he could just be growth hormone deficient. Granted not classic growth hormone deficiency, but growth hormone deficient on some level.

So, Daylon and I both had our blood drawn and now we get to sit and wait for 3-4 weeks for the results. Once the testing comes back we will decide where to go from here. It may involve more testing and it may not, but at least we are finally on the road to getting the answers that we need as to why Daylon is the way he is and can prepare for any obstacles that we may or may not face down the road.

At least we know for a fact that the growth hormone is helping.

Wonderful News from Cardiology!!

We had Daylon's cardiology appointment yesterday and all went great!! He does have a murmur, but it is an innocent murmur called a Still's Murmur. Nothing to concerning, two of my cousins have Still's Murmurs and they are doing fine!! The doctor also did an EKG and that was normal as well. So, now we don't have to go back to Cardiology and we can rest easy knowing that the murmur is nothing serious and his heart is fine!! Praise GOD!!!

Love to all!!

~Jean

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.

~Jean

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.

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.

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.