First Haircut since August 4/28/16

Robbie got his first haircut since August. His hair is starting to come back since he finished the multiple rounds in the fall of heavy chemo. His hair is able to grow slowly on the current chemo with some curl. He had a very sweet hairdresser today that gave us her cell number if he was ever feels too sick to come in for a haircut. 

Therapy at Anderson 4/28/16

Raymond worked with Robbie again today in PT trying to stretch out his leg. His leg was better than yesterday and gained back the degrees that were lost when he hurt his foot. Yesterday the best they could do was 39 degrees and today they got his leg to 31 degrees. It causes Robbie a lot of pain while they work with him. For awhile two of the PT’s worked on his leg. Keep praying for his leg to straighten out and allow him to walk again. Robbie wants me to work with his leg too. I’ve tried a few times, but as soon as he is in pain, I stop. I wouldn’t be a very good PT or OT! I admire how hard they work. 

Robbie with his new Star Wars walker bag from his cousin Beth Riechers. 


Chemo Round 9 4/24/16

Robbie and the sloths are watching anime during chemo. 

Early morning at Anderson. 
Robbie has started round 9 of chemo today. He has a fantastic nurse!!  For round 8, we had a lot of problems with his nurse being untrained to give chemo. She didn’t use gloves…asked me how to do his chemo…scary.  I let Dr Ratan know my concerns and we are back to the usual great nursing staff today. She is really good with Robbie, so he is doing much better too. Other nurses have stopped by to check on him too. 
The chemo drug Methotrexate will run for 4-5 hours and then he will have bloodwork done to check to see if they have the desired levels. 

Broken Foot 4/21/16

Dr Lin, Robbie’s orthopedic surgeon, called last night. He said that Robbie has a hairline fracture in his foot on the leg that had surgery. Apparently, the bones in that leg are more fragile now due to lack of use. This explains all the pain he had after hurting his foot during therapy. He can still use his foot while it heals, but he will need to be more careful. One step forward and a few steps backward. 

His doctor is also monitoring the progress of straightening Robbie’s leg. If he continues to struggle with his knee being frozen at a 40 degree angle, his doctor will need to do surgery on his leg. 

Autism Awareness Month: Robbie’s Story 4/20/16

With Robbie’s permission, I’m posting about Autism today. I have presented to teachers about autism and I’ve taught many students on the spectrum. 
I’ve talked about writing a book with Robbie, but I’m not sure anyone wants to read another autism story. 
When he was younger if you told me that we would someday face a crisis more stressful than autism, I would have told you that you were crazy. Cancer has changed that view. I only wish we had the same support for autism when he was young that we do for cancer now. 
What the doctors said his first few years…
He isn’t talking because his sisters are talking for him. Some kids are up at night past the first year. (In his case until he was 6) If he doesn’t like noise it is probably because of all his ear infections. Banging his head on the floors and walls is just for attention. Not looking at strangers is just being shy. I could go on and on. 
Why is he crying again? Maybe boys don’t like to be held as much as girls. What are the best strategies for a trip to the store…to the library….to church? When is he going to communicate with us? What intervention or program should we try next? What specialist should we take him to see? 
Examples of leaving the house….
Trips out of the house were well thought out missions with the girls being advised in advance of our plans. If your brother starts crying or screaming, we are going to leave everything behind and race to the closest exit. This could mean abandoning our shopping cart at HyVee or leaving the books we wanted at the library. The girls learned early how to reserve books online, so they could have more books. I was jealous of the mothers taking their time, carrying books for their kids, and reading to their children. 
One way we coped with the his first few years was through humor. Ruth once wrote a hilarious paper for school about her brother’s fear of squirrels. There are too many stories to list on the blog, but often the best choice was laughter. 

We started to notice his unusual abilities in math by age 2 when he programmed our stereo CD player to play his favorite songs. When he was 3 he could tell someone their age if they told him the year they were born. By age 4, he started telling the checkout clerks the exact change they needed to give me. We bought his first math workbook. Best purchase ever! He was happy for hours doing math problems. Keep in mind that he was attending an early childhood special education class due to his significant language delay.

It is fair to say that I am that “high maintenance” parent. I’m fast forwarding past all the early grades, because it would be too long.
It  was middle school before we learned about aspergers.  One year I bought all his teachers a book about Aspergers by Tony Atwood. No one sent me thank you cards, but I hope a few of them read the book. We also bought him a cell phone, so he could call us if he needed anything. This was after someone blocked him from riding the bus home. Bullying is a huge problem for kids on the spectrum. 

His junior and senior years he attended a school for gifted kids called Oklahoma School of Science and Math, which is a fantastic school with a wonderful staff. 

I would like to meet the first teacher that came to our house to work with him at 18 months. She told me that not every child is going to be a rocket scientist.  Trust me, there are many adults on the autism spectrum working for NASA. 
For more information on Aspergers and Autism
Dr Tony Attwood from Australia. He is a leading authority on Aspergers. He is a great speaker and has written a few great books.
Dr Temple Grandin: She is to autism like Helen Keller is to the blind. If you get a chance to hear her speak or read her books, you will be amazed at what she has accomplished.

Houston Flood 4/18/16

Water levels are way up on the river on Holcombe Street. 
Street in front of MD Anderson this morning. 
Some of the streets we passed on the way home today are still flooded. 
Water going over the small bridge. 

We made our way to Anderson in the rain and flooding today. The streets we went on were open, but other areas of Houston were flooded. 

Poor Robbie hurt his foot during OT. He almost fell and put a lot of weight on his bad leg. He is in a lot of pain right now if he moves his leg. They will xray his foot on Wednesday if it is still hurting him. 

Running a Fever 4/16/16

Robbie has a low fever tonight. If it goes up, we will have to go to Anderson’s ER. We are praying we don’t end up there in the middle of the night. 

Updated Saturday Morning:
No fever this morning, but his throat is still bothering him. We will take his temp throughout the day. Anything over 100 could indicate very low blood counts and we will take him to the hospital. This has been a rough round of chemo.