Landon is now at Little Light House

Landon has started the summer session at Little Light House in Tulsa, OK.  This is a wonderful school for special needs children and gives kiddos the daily physical, occupational, speech and vision therapy they need daily.  The school is funded from private donations and volunteers who love on the special little kids.  The LLH school ask that parents do some fund raising events and volunteer hours but never ask for money.  So the one big event coming up is Mini Laps for the students this September and Landon Warren would love your help in sponsorship to help the school stay open and help all the special kids.  Just click on the link and say you will sponsor Landon and they will send you a tax receipt.  Thank you

https://sna.etapestry.com/fundraiser/TheLittleLighthouse/MiniLaps2012/individual.do?participationRef=468.0.154473057

Landon in his KidWalk

Watch this video of the hard working volunteers at Little Light House getting Landon to walk the hallways at school in his KidWalk...

Landon & the volunteers

Landon in TiLite Wheelchair

Landon was working hard today at therapy in a manual light weight wheelchair! 

Landon Speech Therapy

Landon working with the 'Logan ProxTalker' in Speech Therapy today. Landon is learning to make choices with the help of pictures.

Landon's new mini me

Bath Time

Bath time with a open trach hole and a non sitting child is not easy but we use our baby seat and do the best we can. NO splashing allowed :)

Light Box Fun

Landon learning wheelchair skills

Landon has learned to push a manual wheel chair several feet across the room.   He is now learning to turn the big wheels different directions and get to where he wants to go.  We demo different ones at our therapy place to find out which one works for him before we order him is own chair.  It may not always be what he wants to do but he needs to learn and is doing so well.  This is just one of the many options Landon has for mobility.  Go, Landon Go!

Landon's messy eating

The messy eating days of Landon.  We just use the Occupational Therapy side for eating different messy things.

Landon on Facebook

Follow Landon Warren on Facebook

Sick baby :(

Poor baby Landon has been sick for the whole year of 2011. Just right before new year Landon was having some respiratory issues and Landon's pediatrician put him on Zithromax (antibiotic) for 5 days and increased his Caffiene medication to help with the apnea spells. With little improvement we went back to the dr who then sent us to the hospital to have cultures and x-rays done. Results...RSV. The Respiratory syncytial virus (RSV) is a very common virus that leads to mild, cold-like symptoms in adults and older healthy children. It can be more serious in young babies, especially to those in certain high-risk groups.

So for Landon having a trach and some breathing issues RSV is a big deal and really sets him back. Landon has been on his vent on and off CPAP and BIPAP for almost two months now and using his night time feeding pump thru his Mic-Key button. With having RSV there is no antibiotic to help him fight off the virus. We just increase the breathing treatments he gets a few times daily to every 2-3 hours and hope Landon works this virus out of his system.

Well 3 weeks after we were at the hospital being diagnosed with RSV we were back in the same place have more cultures and x-rays taken only to find out not only does he still have RSV but now 4 other bacteria infections in his lungs. (Klebsiella-oxytoca, Pseudomonas-aeruginosa, Serratia-marcescens, & Acinetobacter-baumannii) That is crazy who gets all of this at one time?

Landon was then put back on TOBI (tobramycin) antibiotic breathing treatment and an oral antibiotic Omnicef for a 10 day treatment. Well 10 days are up and Landon is not doing that much better so the dr said she was bring out the big guns. Landon is now starting Cipro for 10 days and we are hoping with it and Tobi he should be better very soon.
Thanks for all you prayers

Laughing Boys

Theses two boys love playing together and Landon loves to laugh with his speech valve on.

Movement

Landon has grown so much the past year, from a baby who could not move or hold up his head to now learning to move all over the place.  This is a video clip of Landon wiggling himself off his mattress, he can repeat this over and over.  It does take him almost a full minute but he figures out how to get himself off the mat.

RSV :(

Poor baby Landon, you think you can protect your kids from getting sick but the winter season is so hard.  This year Landon did not get the vaccination Synagis shots to protect him from the Respiratory Syncytical Virus (RSV) so guess what Landon got....RSV.  RSV is a very common virus that has cold-like symptoms in older children and adults but in small young infants it can be very serious.
  Landon was sick for a few days and we took him in to his pediatric dr who gave him an antibiotic, antibiotics do not work for RSV.  Landon went to the ER Friday night to see why he was not getting any better and after a quick culture and chest x-ray the Dr's diagnosed Landon with RSV and said he would have to be under close watch for the next week or so.  With all the home equipment we have (vent, suction machine, nebulizer, feeding tube) we were able to keep from being admitted in to the hospital.  At home we will be doing breathing treatments every 2-3 hours to keep his lungs clear because we do not want this to turn into pneumonia.  

 Landon does very well with being attached to his machines to help with his breathing.

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