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.

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)

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.

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.

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.

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

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.