Landon now has new goggle like glasses that actually stay better on his face!
Friday, April 16, 2010
Mayo Clinic Day 4
Friday, April 16, 2010
Well if you ever need a second opinion, the Mayo is the place!
We are getting the full tour here with all the different types of specialist here at the Mayo. Our day began with our 6 block walk to the Mayo building for a 7am EEG test, the exam was long. They need to get 20 minutes of awake time, 20 min of sleep time, and 15 minutes of different types of stimulation including noise, pictures, and lights.
Landon did very well during the exam, mommy had to hold me the whole time to keep me from moving around.
The red dots from the EEG stayed on his head until the next day, poor baby Landon!
He looks a little mad.
The next appt today was in the Otorhinolaryngology department, ok... ear, nose, and throat dr. She was very helpful today she placed a camera scope down Landon's trach to check for scar tissue and to look in his airway in to his lungs and she thinks they look good. She then did a scope down Landon's nose to look at his vocal cords and voice box, it looks great but Landon did not like it. The part that could be a problem for Landon is the scar tissue she noticed right above where his trach tube is actually located. So she has scheduled a surgery next Wednesday to remove the tissue before it becomes a breathing problem.
At 10 am we went to meet with 2 different Pulmonary doctors who both think Landon's breathing issues are neurological not a lung issue. The sent us for a chest x-ray and then scheduled us for some blood gas draw this afternoon.
Have you watched a sitting chest x-ray with a baby who can not sit or hold up his head???
Well Landon was mad about this today and his machines were beeping the whole time.
Our next stop was having a hip x-ray to make sure his frog legs are just a muscle issue and not a hip issue. The results are in...hips are good it is just a weak muscle issue, which is good because it will be easier to fix.
Next we went for a consult with the neurologist we saw yesterday, he had upped his Mestion medication yesterday and then tells me today that i need to skip a few of Landon's doses on Sunday night and Monday morning because he wants to have a EMG test Monday morning. This is the same test we went to OK City to complete in November last year that gave us the conformation of neuromuscular condition, the Dr feels if we were to complete this EMG with out the medication this time that we might have better results that could help them narrow down the details of the condition.
Well if you ever need a second opinion, the Mayo is the place!
We are getting the full tour here with all the different types of specialist here at the Mayo. Our day began with our 6 block walk to the Mayo building for a 7am EEG test, the exam was long. They need to get 20 minutes of awake time, 20 min of sleep time, and 15 minutes of different types of stimulation including noise, pictures, and lights.
Landon did very well during the exam, mommy had to hold me the whole time to keep me from moving around. 
He looks a little mad.
The next appt today was in the Otorhinolaryngology department, ok... ear, nose, and throat dr. She was very helpful today she placed a camera scope down Landon's trach to check for scar tissue and to look in his airway in to his lungs and she thinks they look good. She then did a scope down Landon's nose to look at his vocal cords and voice box, it looks great but Landon did not like it. The part that could be a problem for Landon is the scar tissue she noticed right above where his trach tube is actually located. So she has scheduled a surgery next Wednesday to remove the tissue before it becomes a breathing problem.
At 10 am we went to meet with 2 different Pulmonary doctors who both think Landon's breathing issues are neurological not a lung issue. The sent us for a chest x-ray and then scheduled us for some blood gas draw this afternoon.Have you watched a sitting chest x-ray with a baby who can not sit or hold up his head???
Well Landon was mad about this today and his machines were beeping the whole time.
Not a
happy
Landon!
Our next stop was having a hip x-ray to make sure his frog legs are just a muscle issue and not a hip issue. The results are in...hips are good it is just a weak muscle issue, which is good because it will be easier to fix.
Next we went for a consult with the neurologist we saw yesterday, he had upped his Mestion medication yesterday and then tells me today that i need to skip a few of Landon's doses on Sunday night and Monday morning because he wants to have a EMG test Monday morning. This is the same test we went to OK City to complete in November last year that gave us the conformation of neuromuscular condition, the Dr feels if we were to complete this EMG with out the medication this time that we might have better results that could help them narrow down the details of the condition.
The next consult was with the pediatric specialist who went over most of Landon's results that we have so far.
Well ALL of Landon's x-rays look great!!!! Lungs included! That narrows down Landon's condition to neurological not growth or developmental issues!!! The bad news is what mom as been asking several doctors before an all have denied. Landon's EEG was not good, they will be doing more test but the zone outs mom does not like are actual seizures. :( This makes me so sad to hear but at least after a few test next week we will start on a different medication that might help Landon have less episodes and maybe less apnea episodes. So yes bad news but now that they have some testing to prove it maybe we can fix it.
Last stop Blood Gas draw, no more blood please. Can we just go home for today, shuttle here we go.
Thursday, April 15, 2010
Mayo Clinic Day 3
Thursday, April 15, 2010
Who schedules kids appointments at 7:15AM, well the Mayo does. We actually made it right on schedule to meet with a Family History Geneticist this am and wow do they pick your brain for all family medical history related to muscle issues or not. Landon's 8am appt was with a different geneticist who is cross trained in neurology, she was very interested in Landon's history. She was able to make a phone call to the lab in Wisconsin that ran Landon's CMS blood panel and asked them to test 2 different genes that have just been added to the CMS panel in the last month. Wow technology is changing daily, but I am sure it will still take them 6 weeks to get the results back.
We left floor 7 and went up to floor 9 for Landon's next scheduled appt at 10:30am. That Dr was running late in the OR so it was rescheduled for 3:30pm, so now we have time for a long lunch and will be able to charge Landon's machines. After lunch we traveled back up to the 16 floor and waited for our neurological consultation. Dr. Mack the neurologist thinks we are on the right track and scheduled us with Dr. Selcen a neurologist who works very closely with Dr. Engle and CMS kids. We then needed to have Landon's blood drawn, every time we have had blood drawn they say he his a hard stick and they are not kidding. Over a hour and 3 sticks later we were done, poor baby.
We then took Landon back to floor 9 to meet with a Gastroenteritis. She thinks Landon is doing very well with his Mic-Key and Fundo, and as long as everything functions well he should be good to start on foods!
What a long day, we are all done for now!
Who schedules kids appointments at 7:15AM, well the Mayo does. We actually made it right on schedule to meet with a Family History Geneticist this am and wow do they pick your brain for all family medical history related to muscle issues or not. Landon's 8am appt was with a different geneticist who is cross trained in neurology, she was very interested in Landon's history. She was able to make a phone call to the lab in Wisconsin that ran Landon's CMS blood panel and asked them to test 2 different genes that have just been added to the CMS panel in the last month. Wow technology is changing daily, but I am sure it will still take them 6 weeks to get the results back.
We left floor 7 and went up to floor 9 for Landon's next scheduled appt at 10:30am. That Dr was running late in the OR so it was rescheduled for 3:30pm, so now we have time for a long lunch and will be able to charge Landon's machines. After lunch we traveled back up to the 16 floor and waited for our neurological consultation. Dr. Mack the neurologist thinks we are on the right track and scheduled us with Dr. Selcen a neurologist who works very closely with Dr. Engle and CMS kids. We then needed to have Landon's blood drawn, every time we have had blood drawn they say he his a hard stick and they are not kidding. Over a hour and 3 sticks later we were done, poor baby.We then took Landon back to floor 9 to meet with a Gastroenteritis. She thinks Landon is doing very well with his Mic-Key and Fundo, and as long as everything functions well he should be good to start on foods!
What a long day, we are all done for now!
Wednesday, April 14, 2010
Mayo Clinic Day 2
Wednesday April 14, 2010
We were ready and out the door at 8 am, we took the shuttle ride to the Mayo buildings downtown. Our first stop was for a coffee for sleep deprived mommy and then checking in with the desk on 7 south of Gonda building for any cancellations today. No such luck with cancellations today in the Urology department maybe tomorrow. Our first scheduled appt today was at 10 am on the 16th floor of the Mayo building with a Endocrinologist. The Endocrinologist thinks that Landon is right on schedule for height (70cm) and weight (18lbs), yea good news. She sent us over to take x-rays of Landon's knees to get a growth age of the bones to follow his development. We then had a consult with a nutritionist who thinks Landon is also doing well with growth and wants us to start backing off the night-time feeding pump and start trying baby foods! Yea fun!
Our next scheduled appointment was for x-rays, they first took pictures of his chest and trach site and then took us to a live video x-ray machine where they watched his breathing, pharynx, and diaphragm. The live video x-ray was very cool to watch, they think he is doing very well with his breathing and his throat did not close off during the exam.
It was then time for lunch and time to recharge Landon's machines. At 1pm Landon was scheduled for a Echo-cardiogram on the 6th floor of the Gonda building, Landon did so well during this exam. It last just over a hour and we had the two nicest people working with him, this whole place is full of nice people.
We were ready and out the door at 8 am, we took the shuttle ride to the Mayo buildings downtown. Our first stop was for a coffee for sleep deprived mommy and then checking in with the desk on 7 south of Gonda building for any cancellations today. No such luck with cancellations today in the Urology department maybe tomorrow. Our first scheduled appt today was at 10 am on the 16th floor of the Mayo building with a Endocrinologist. The Endocrinologist thinks that Landon is right on schedule for height (70cm) and weight (18lbs), yea good news. She sent us over to take x-rays of Landon's knees to get a growth age of the bones to follow his development. We then had a consult with a nutritionist who thinks Landon is also doing well with growth and wants us to start backing off the night-time feeding pump and start trying baby foods! Yea fun!
Our next scheduled appointment was for x-rays, they first took pictures of his chest and trach site and then took us to a live video x-ray machine where they watched his breathing, pharynx, and diaphragm. The live video x-ray was very cool to watch, they think he is doing very well with his breathing and his throat did not close off during the exam.
It was then time for lunch and time to recharge Landon's machines. At 1pm Landon was scheduled for a Echo-cardiogram on the 6th floor of the Gonda building, Landon did so well during this exam. It last just over a hour and we had the two nicest people working with him, this whole place is full of nice people.
Tuesday, April 13, 2010
Mayo Clinic Day 1
Tuesday, April 13, 2010
We started our afternoon with lunch in the park!
1st Shuttle ride from Ronald House to the Mayo buildings
Mayo Building 16th floor West Lobby- very nice volunteer passing out free books for kids!
We started our afternoon with lunch in the park!
1st Shuttle ride from Ronald House to the Mayo buildings
Tuesday, March 30, 2010
LOOK at my new glasses!
Landon just got his new glasses today! They are big now but he will grow in to them so quickly. He has a strong script so hopefully these will help him see us and he will be able to track his toys.
Tuesday, March 2, 2010
Physical Therapy & Visual Sensory Tools
Landon has been growing so quickly in the past few weeks and is starting to gain some strength in his muscles. We now have physical therapy in our home twice a month and a vision specialist that will start coming once a month. The therapists have been giving us different ideas on how to position Landon to work with different muscles. Landon has just now learned to grab a ring toy when it is placed in his hands and we will be working on getting him to reach for toys. Our vision specialist says that Landon reacts well to red and reflective things so to the store and online we go. I have been on the hunt for red (Mardi Gras) beads and big shinny eggs. He just received in the mail last week a Jacob's Rib-it-Ball 14" in red and yellow and the Tangle book with the Tangle toys, they are also in red and yellow colors with some blue, black and white. These toys will be fun for Landon to play with and they are tools so that he will also be learning and developing skills at the same time.Landon is starting to grow out of his Boppy sleeping pillow in his crib so we moved up to a Nap Nanny bed which is much more portable. We can position him in a few different ways it has been great. We also just got in the mail his Wingbo Swing that will help Landon develop his tummy and neck muscles. I put him in today when it arrived but I do not think he was quite ready for it he was still in nap land, so we will try again when he is awake.
Wingbo Swing March 2, 2010
Nap Nanny bed
Subscribe to:
Posts (Atom)