Thursday, November 4, 2010
Learning to walk
Landon tested a KidWalk during his physical therapy sessions for weeks. Now with the help from our therapist and insurance Landon now has one of his own to use at home! This KidWalk is a type of walker or gait trainer that will give him the range of motion he needs to learn to walk with assistance. Right now Landon is able to stand in the KidWalk and get some weight bearing and some range of motion and we will hopefully learn to walk soon.
Sunday, October 31, 2010
Halloween 2010
This fall was a great time for pumpkin patch visits and getting dressed up a few times...
Toy Story 3 is the new movie the kids are crazy for so here we go...
Landon (Alien) brother (T-Rex) cousins (Buzz & Woody)
Toy Story 3 is the new movie the kids are crazy for so here we go...
Landon (Alien) brother (T-Rex) cousins (Buzz & Woody)
Wednesday, October 20, 2010
The Ten Commandments for Parents of Handicapped Children
This was found at: www.spinabifidasupport.com
The Ten Commandments for Parents of Handicapped Children
1. Take one day at a time, and take that day positively. You don't have control over the future, but you do have control over today.
2. Never underestimate your child's potential. Allow him, encourage him, expect him to develop to the best of his abilities.
3. Find and allow positive mentors: parents and professionals who can share with you their experience, advice, and support.
4. Provide and be involved with the most appropriate educational and learning environments for your child from infancy on.
5. Keep in mind the feelings and needs of your spouse and your other children. Remind them that this child does not get more of your love just because he gets more of your time.
6. Answer only to your conscience: then you'll be able to answer to your child. You need not justify your actions to your friends or the public.
7. Be honest with your feelings. You can't be a super-parent 24hours a day. Allow yourself jealousy, anger, pity, frustration, and depression in small amounts when ever necessary.
8. Be kind to yourself. Don't focus continually on what needs to be done. Remember to look at what you have accomplished.
9. Stop and smell the roses. Take advantage of the fact that you have gained a special appreciation for the little miracles in life that others take for granted.
10. Keep and use a sense of humor. Cracking up with laughter can keep you from cracking up from stress.
The Ten Commandments for Parents of Handicapped Children
1. Take one day at a time, and take that day positively. You don't have control over the future, but you do have control over today.
2. Never underestimate your child's potential. Allow him, encourage him, expect him to develop to the best of his abilities.
3. Find and allow positive mentors: parents and professionals who can share with you their experience, advice, and support.
4. Provide and be involved with the most appropriate educational and learning environments for your child from infancy on.
5. Keep in mind the feelings and needs of your spouse and your other children. Remind them that this child does not get more of your love just because he gets more of your time.
6. Answer only to your conscience: then you'll be able to answer to your child. You need not justify your actions to your friends or the public.
7. Be honest with your feelings. You can't be a super-parent 24hours a day. Allow yourself jealousy, anger, pity, frustration, and depression in small amounts when ever necessary.
8. Be kind to yourself. Don't focus continually on what needs to be done. Remember to look at what you have accomplished.
9. Stop and smell the roses. Take advantage of the fact that you have gained a special appreciation for the little miracles in life that others take for granted.
10. Keep and use a sense of humor. Cracking up with laughter can keep you from cracking up from stress.
Tuesday, October 5, 2010
X:Panda
It's not just because my favorite animal is a Panda Bear...but Landon now has a x:panda seating system. This is a great seat for Landon to learn to sit up in while working on head control. We have two different bases that go with it so we can use the buggy frame for outings and the hi/low base at home. The hi/low base works great at home for Landon to sit close to the floor for play time and raise up high to sit at the dinner table with the family.
Friday, October 1, 2010
Landon is turning 1 year
The Big Birthday Boy went to have his pictures taken on Friday! Love the Picture People!
Landon did so well and the photographer was great, they do a great job of positioning Landon since he can not sit or stand yet.
Thursday, September 30, 2010
Blood Test
Landon was seen by Dr Kayser the Tulsa, OK Geneticist. The last set of blood test he ran for Landon all came back negative. This means he knows nothing else to run for Landon. Landon has had blood work and testing since birth and every test has come back within normal levels and negative. I wanted to make a list of some of the test we have ran just to have it all in one place.
CK-creatine kinase
Free Thyroxine (T4)
TSH (Thyroid Stimulating Hormone)
Newborn Metabolic Screen (T4/PKU)-several times
Carnitine Level-several times
Caffeine (at least Monthly since 4 weeks old)
Chromosomal MicroArray Analysis
Myotonic Dystrophy (DMPK)
Prader-Willi Syndrome (SNRPN)
Spinal Muscular Atrophy (Types 1,2,3,&SMARD1)
Congenital Myasthenic Syndrome (CMS)-only 60% ruled out
Organic Acid Screen
Blood Amino Acids-Quantitative-the list is huge
Acylcarnitine Quantitative Profile
Blood Chromosomes-result 46, XY
Ven Lactic Acid
Ammonia Level
ACP
UOA-urine organic acid
SAA
NAIP-Gene, Protein
TK2-thymidine kinase 2 -mitochondrial DNA
Comprehensive Metabolic Panel-Sodium.Potassium.Calcium.Chloride.Carbon Dioxide.Glucose.Blood Urea Nitrogen (BUN).Creatinine.Total Protein.Albumin.Total Bilirubin.Alkaline Phosphatase (ALP).Aspartate Aminotransferase (AST).Alanine Aminotransferase (ALT).
Renal Function Panel
Very Long Chain Fatty Acid(VLCFA)-pending
Blood Gas-# of times...?
VMA-Vanillylmandelic acid
HVA-Homovanillic acid
PHOX2B-Congenital Central Hypoventilation Syndrome
CK-creatine kinase
Free Thyroxine (T4)
TSH (Thyroid Stimulating Hormone)
Newborn Metabolic Screen (T4/PKU)-several times
Carnitine Level-several times
Caffeine (at least Monthly since 4 weeks old)
Chromosomal MicroArray Analysis
Myotonic Dystrophy (DMPK)
Prader-Willi Syndrome (SNRPN)
Spinal Muscular Atrophy (Types 1,2,3,&SMARD1)
Congenital Myasthenic Syndrome (CMS)-only 60% ruled out
Organic Acid Screen
Blood Amino Acids-Quantitative-the list is huge
Acylcarnitine Quantitative Profile
Blood Chromosomes-result 46, XY
Ven Lactic Acid
Ammonia Level
ACP
UOA-urine organic acid
SAA
NAIP-Gene, Protein
TK2-thymidine kinase 2 -mitochondrial DNA
Comprehensive Metabolic Panel-Sodium.Potassium.Calcium.Chloride.Carbon Dioxide.Glucose.Blood Urea Nitrogen (BUN).Creatinine.Total Protein.Albumin.Total Bilirubin.Alkaline Phosphatase (ALP).Aspartate Aminotransferase (AST).Alanine Aminotransferase (ALT).
Renal Function Panel
Very Long Chain Fatty Acid(VLCFA)-pending
Blood Gas-# of times...?
VMA-Vanillylmandelic acid
HVA-Homovanillic acid
PHOX2B-Congenital Central Hypoventilation Syndrome
Thursday, August 19, 2010
Standing
Now that Landon is holding his head up better we are able to get him in the standing position. We have on order a stander but it takes a long time to order so until then our physical therapist is giving us a loaner one that is similar to the one we have on order. He does not have a lot of strength in his muscles and standing is very hard for him to do so this will help him get into the position and train his muscles for some impact. He also has difficult with keeping his ankles straight so we were fitted for some ankle braces that will help keep them from bending so much.
Tuesday, July 27, 2010
Wednesday, June 23, 2010
Tuesday, June 22, 2010
Friday, April 23, 2010
Mayo Clinic Day 8
Thursday, April 22, 2010
Landon did great thru the night and is doing very well after his trach surgery, he will now be attached to the EEG probes for the next 24 hour. He did ok with getting the leads glued on his head, he was not thrilled about us taking them off. The EEG showed no seizure activities and Landon was released from the PICU Friday morning.
.
Landon did great thru the night and is doing very well after his trach surgery, he will now be attached to the EEG probes for the next 24 hour. He did ok with getting the leads glued on his head, he was not thrilled about us taking them off. The EEG showed no seizure activities and Landon was released from the PICU Friday morning.
.
Wednesday, April 21, 2010
Mayo Clinic Day 7
Wednesday, April 21, 2010
The walk to Saint Mary's Hospital begins early today with a 7am check-in time for Landon's MRI. Mom changed out Landon's trach to a Shiley with no metal and Landon was on his way for a busy day. Landon's MRI started at 7:30 am and then moved over to the OR at 9:31am. Landon has granulation tissue above his trach site that needs to be removed to open up his air way. The procedure was a great success and Landon made his way up to the PICU to recover for the next 24 hours.
The walk to Saint Mary's Hospital begins early today with a 7am check-in time for Landon's MRI. Mom changed out Landon's trach to a Shiley with no metal and Landon was on his way for a busy day. Landon's MRI started at 7:30 am and then moved over to the OR at 9:31am. Landon has granulation tissue above his trach site that needs to be removed to open up his air way. The procedure was a great success and Landon made his way up to the PICU to recover for the next 24 hours. 
Tuesday, April 20, 2010
Mayo clinic Day 6
Tuesday, April 20, 2010
Sleep in day! With not giving mestinon every 4 hours it was a great night. Out 1st appointment today was with a Pediatric Urologist. All is good, Yeah!!! To lunch and the park on this great day!
Sleep in day! With not giving mestinon every 4 hours it was a great night. Out 1st appointment today was with a Pediatric Urologist. All is good, Yeah!!! To lunch and the park on this great day!
Monday, April 19, 2010
Mayo Clinic Day 5
Mayo Clinic Day 5
Monday, April 19, 2010
We got up and ready early today for Landon's 6:45am sedated EMG at Saint Mary's Hospital. Landon was weighed and checked in by 7am. We then met with the RT to look over Landon's vent and his setting, apparently it is so new the Mayo has not used the machine they have only heard about it. Next to visit his pre-op room was 2 different Anesthesiologist who checked Landon out completely and then gave him some med via Mic-Key to help them start his IV. The TV in the waiting room informed families exactly what time and location of the patient, in OR 8:31; procedure starts 8:51; procedure done 10:41; exit OR 10:54; Recovery Room 10:59. Landon did well recovering from being put under and the EMG and we were out of the hospital just before noon.
Landon's next appointment was back at the Mayo building a 1pm, they do give tight busy schedules around here. We met with Dr. Selcen a neurologist who works with CMS kids, she wants to take Landon of the Mestinon (Pyridostigmine Bromide) medication. She does not think Landon has CMS because his EMG results have improved from the last test he had at 7 weeks old. She has made a few suggestions that she thinks Landon could possibly have but she is not sure. So on to more blood work and a urine sample, in a infant really not the easiest thing to tape on to a baby.
Monday, April 19, 2010
We got up and ready early today for Landon's 6:45am sedated EMG at Saint Mary's Hospital. Landon was weighed and checked in by 7am. We then met with the RT to look over Landon's vent and his setting, apparently it is so new the Mayo has not used the machine they have only heard about it. Next to visit his pre-op room was 2 different Anesthesiologist who checked Landon out completely and then gave him some med via Mic-Key to help them start his IV. The TV in the waiting room informed families exactly what time and location of the patient, in OR 8:31; procedure starts 8:51; procedure done 10:41; exit OR 10:54; Recovery Room 10:59. Landon did well recovering from being put under and the EMG and we were out of the hospital just before noon.
Landon's next appointment was back at the Mayo building a 1pm, they do give tight busy schedules around here. We met with Dr. Selcen a neurologist who works with CMS kids, she wants to take Landon of the Mestinon (Pyridostigmine Bromide) medication. She does not think Landon has CMS because his EMG results have improved from the last test he had at 7 weeks old. She has made a few suggestions that she thinks Landon could possibly have but she is not sure. So on to more blood work and a urine sample, in a infant really not the easiest thing to tape on to a baby.
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!
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