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
Thursday, September 30, 2010
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.
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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.
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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. 
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