Tuesday, October 13, 2009

A Day in the Life ...

Have you heard me say that October is National Spina Bifida Awareness month?? Well, if you missed the memo... IT IS!!! :) Go ahead and read HERE to find out all about Spina Bifida, but today we are going to talk about:

A Day in the Life of A Child With Spina Bifida.

Specifically, a day in OUR life!

Knowing that few of you know EXACTLY what our days look like, so I thought today we would take you through a typical day in our life, a life with Spina Bifida in our family!

5:30 am ~ wake Nat for his medications (through much trial and error we have found that giving him his behavior medication at this time lets it kick in for morning routine AND more importantly, wears off early enough for him to eat at night before bed. You see, one of the main side effects of the medication that opens his mind to learning and behaving in a socially acceptable manner is that it is an appetite suppressant, and he can not afford to loose any more weight!) IF Nat did not have a "proper" Bowel Movement the day before he will also get a Ducloux suppository at this time.

6:15 am ~ Nathaniel actually wakes up, usually hangs in his room watching a movie or snuggles with mommy

6:45 am ~ quiet stretches and muscle relaxation.

7:00 am ~ First cath of the day. We catheterize Nathaniel every 2.5 to 3 hours during the day to keep his bladder healthy and him infection free.

7:10 am ~ "Sit Time" Nathaniel will then sit on the toilet for the next 20 to 30 minutes. The ONLY toilet in our very small home! This is in hopes of him having his daily BM, so that we don't have to do anything else about it all day!

7:30 am ~ Foot inspection & dress for the day. Depending on the day, this is about a 20 minute procedure, where we carefully check his feet, don his socks, braces, shields, pants & shoes. He then gets to pick his shirt and put it on. It is imperative that we check his feet EVERY morning to catch ANY sign of a pressure sore or cut. These can be disastrous for Nathaniel

8:10 am ~ Out the door for school. Because of the speed that Nathaniel moves (or fails to in most cases :) it takes about 10 minutes for us to walk from the parked car to his classroom... and YES, I park in the closest space to his classroom!

8:30-300 pm ~ Baring any behavioral or medical problems at school, this is mommy's break. A time for me to fight with the insurance companies, coordinate care and appointments, get things ready fro when the kids get home, and occasionally get some personal work done! During this time Nathaniel's one on one at school monitors his eating, does his medical care (including cathing him at least twice) and meets his other needs.

3:10 pm Nathaniel gets off of the school bus. Routine is VERY important here! FIRST thing done is his next cathing. If there is a customer in the store (his bus drops him at my store) or someone in the bathroom, his whole afternoon is thrown off behaviorally by delaying this cathing!

3:20 pm Afternoon snack and talking about the day at school.

3:45 to whenever we are done. Homework. Yep, this is a CHALLENGE! It often takes upwards of two hours to get homework done. But then there are the blessed days when he powers right through it and is done in a half an hour! I STILL wish I could figure out the magic to those days!

sometime mid afternoon ~ at least 30 mins of stretching & yoga to help with his pain and back tightness.

5:00 ~ Butterfly bewitching hour. On the days Nathaniel has to stay with us until closing at 6 pm, 5 becomes his bewitching hour. It is a very challenging time, where someone has to pretty much be one on one with him to maintain a level of behavior that we won't hang him for! This trades off as to who has to do this duty depending on what else is going on that day. This duty usually falls to either Faline, myself, Brianna or on occasion Mark is off work by now. 5 to 6:30 are the longest periods of my day, everyday, no matter who is doing Nathaniel duty that day, it's just exhausting and heartbreaking to listen to, let alone do!

6:00 ~ cath time again! IF Nathaniel has not had his daily BM by now, this is when he gets his Enema and spends 60 to 90 minutes in the bathroom.

6:30 ~ Head home, dinner time, play time and general family time.

7:30 ~ stretches, yoga, deep breathing techniques all to strengthen and relax Nathaniel's back, core muscles and body. Often aqua therapy techniques are done at this time too, using the Whirlpool jets to further relax him after his stretches.

8:00 ~ "grazing time" This is usually when Nathaniel's tummy wakes back up and he is HUNGRY... he will eat ANYTHING that is not nailed down during this time. So my job is to make sure that there are plenty of healthy options out for him to devour and all the junk food (yea, we have so much of this... NOT!) is put away. I try to make the most of this time, making sure that he gets all the nutrients for the day that he needs to grow healthy and strong!

8:30ish ~ Time to cath AGAIN, do a feet check, get pjs and nighttime diapers on, and put on his magnets. From here on out he is SUPPOSED to stay in bed because he no longer has his braces on and he is NOT supposed to walk without the braces on.

8:45 ~ I clean caths and prepare for the morning (setting meds out etc.)

9:30 to 10 he finally drifts off to night night land, and I get my ME time until the morning!

Now keep in mind that this is a "normal day", not a day where there are appointments involved. AT LEAST once per week Nathaniel has some sort of medical appointment that he must go to. Also, on days when his urine is "cloudy" he goes from a 2.5 to 3 hour cathing schedule to an EVERY HOUR cathing schedule. Yep, those days are just TONS of fun... NOT! Fun times hu? But I am not complaining, I love my son and I know that he has a HUGE purpose given to him by his creator for being here. This is just our life. Everyday. Day in and day out. This is what we call normal! What do you call normal that others don't see as normal?