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
Thursday, February 3, 2011
Wednesday, January 19, 2011
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.
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.
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.
Sunday, November 21, 2010
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!!
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!!
Wednesday, November 10, 2010
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.
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.
Tuesday, November 9, 2010
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.
Another Update
I can't wait until Wednesday when we see Dr. Butler again on Daylon's ears. They have not stopped bothering him at all and the left started really draining last Thursday and is still draining. This is after a round of Cephalexin and the continuous Neomycin, hydro-cortisone drops.
On the Endocrinology front, it's a long story. We were not able to see Dr. K on the 4th due to a death in the family. We did reschedule for January 5th, but will most likely be canceling that appointment because circumstances as they are, and have been with Dr. K, we feel that a change in care is needed.
We researched the other two doctors that come to Montana and called both of their offices to get as much information as we can. We have found a doctor that requires that he sees the patient every 3 months while on growth hormone and is familiar with treating RSS/SGA patients. His treatment protocol sounds much like Dr. H's, which I am very excited about!! I called Dr. C's office to see about getting the referral. I am hoping he will give us the referral, if so we will be headed to Missoula to see Dr. S from Utah in January and every 3 months after that. It sounds like the one in Great Falls is not taking new patients and will be closing his practice.
Update 11/9/10 @ 1:30pm
I did talk to the Great Falls office and that doctor is accepting new patients but will not be back in Montana until March. This is too long to wait for a change in care.
Daylon's ears have been really bugging him today, so it is a very good thing that we will be seeing Dr. Butler tomorrow.
On the Endocrinology front, it's a long story. We were not able to see Dr. K on the 4th due to a death in the family. We did reschedule for January 5th, but will most likely be canceling that appointment because circumstances as they are, and have been with Dr. K, we feel that a change in care is needed.
We researched the other two doctors that come to Montana and called both of their offices to get as much information as we can. We have found a doctor that requires that he sees the patient every 3 months while on growth hormone and is familiar with treating RSS/SGA patients. His treatment protocol sounds much like Dr. H's, which I am very excited about!! I called Dr. C's office to see about getting the referral. I am hoping he will give us the referral, if so we will be headed to Missoula to see Dr. S from Utah in January and every 3 months after that. It sounds like the one in Great Falls is not taking new patients and will be closing his practice.
Update 11/9/10 @ 1:30pm
I did talk to the Great Falls office and that doctor is accepting new patients but will not be back in Montana until March. This is too long to wait for a change in care.
Daylon's ears have been really bugging him today, so it is a very good thing that we will be seeing Dr. Butler tomorrow.
Friday, October 8, 2010
Update on Daylon's Surgery
Daylon is doing well. His surgery went really well for the most part. We got there at 6:45 am and were back in a pre-op room by 7:00am. We tested his blood sugar and it was at 95, so we were happy with that. With the quick surgeries like this they do not run an IV, they just do the gas to put them under, because it is usually only a 15 minute or so procedure. At 7:45, Daylon headed back to the OR and Shawn headed off to take Alexis to school. I went and waited in the waiting room. I was beginning to get a little nervous when I noticed that it was 8:15 and Dr. hadn't come out to talk to us yet, when here he came. The first words he said to me were, "As usual, nothing is ever easy with Daylon." He went on to tell me that Daylon was fine, but he is very concerned about his left ear. He said that there is a lot of granulation tissue behind the left ear drum and that he put a tube in but is not sure it will work. So, he gave us ear drops and strict orders to use them for 4-6 weeks and see him for a follow-up at that point. So, now we are praying that the drops work and dissolve the granulation tissue. If they don't we will have to go back for another surgery where this time they will actually lift the eardrum, scrape out all of the granulation tissue and then replace the eardrum. Apparently both tubes were present, just not functional, because he gave them to me in a little container. Thank you all for your thoughts and prayers.
Love you all,
Jean
Love you all,
Jean
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