Sunday, November 27, 2011

We are in Alabama

We are all currently on our annual vacation to visit my parents for Thanksgiving. We have been here since 11/21 and plan on coming home on 12/1. We are enjoying a much needed vacation away from therapist and school.

I was very worried I would not be able to find away to get Jacob's equipment up here. His left hip is still very tight and very well may need surgery. I just remember I did not update after his latest appointments before we left. We seen the physical medicine on the 17th. It was absolutely a waste of time, energy, and money. She said she is keeping everything exactly the way it is and for me to follow-up with Shriner's for his hips. He is only 2 months out on the botox and can only have it every 4 months. He is at the max dose on the Baclofen and his neurologist does not want him on Valium. She didn't even order an x-ray to see how his hips were sitting. Just annoys me. I don't understand what her purpose is outside of being another drug pushing doctor is she does nothing besides meds.

On the 18th he had his fitting for TAOs. I have to call tomorrow to see where they are at in the progress of getting the referral from the MD and insurance approval. They said the entire process is usually less than a month.

Back to our trip. My sister had the genius idea of taking the middle seat out of the van and moving the 3 seater seat to the middle which gave us a HUGE trunk space. Next year I do not know what we will do we won't be able to pull the middle seat out ;-) So I was able to bring Jacob's wheel chair, his gait trainer for him to stand in and his feeder seat. Overall he has done well. He got sick on us about 2 days ago and has had a barking cough and congestion. Mommy came prepared though and he has his mobile pharmacy on board helping him get better.

Andrew and Ava are really enjoying themselves. They love spending time with grandma. Yesterday we went to a waterfall in Fort Payne, AL, the day before that we drove to Chattanooga, TN to see my mother's biological mother and got a picture with her and and all the great grandchildren with us. All we do when we are here is EAT! I decided we need to keep a food journal of how many places we can eat in how many cities and states  and a road kill journal LOL So far we have been to these restaurants since Monday in the is order LOL O'Charley's Alberville, AL, Shoney's Alberville, AL, Giovoni's Albertville. AL, Shoney's again...same one, Ryan's Chattanooga, TN, and Cracker Barrol Alberville, AL, and Ryan's Fort Payne, AL...notice a trend they are mostly buffets thanks to my dad Oh and this is not counting the various fast food places like Jack's and KFC...the only time we had a meal at home was on Thanksgiving. Today is Sunday. It is our day of rest. No going out to dinner today. We are going to have a nice lazy day at my parents.

Monday, November 14, 2011

Therapeutic Ambulatory Orthotic System (TAOS)

I had an online friend who lives close to me that I met recently recommend this product to me. Her son is 5 and uses this to help ambulate. I am very very excited to see if I can get my hands on one of these for Jacob. Like I have written before I am in the process of researching gait training devices and this one really makes me smile.

From what I have read on their website and from what my friend has told me that these are readily paid for by private insurance and medicaid unlike other walking devices that you have to prove your child can use. They are considered orthopedic equipment just like AFOs. So, technically you can have one of these and another gait training device.

Tomorrow I will be calling the company to set up a meeting with them. My son does not have medicaid currently so my fingers are crossed that my crappy ass private insurance will cover this product...or I will have to wait until I leave my job next year.

The website for the company is They say the can fit children as small as 18 months up to 23 years old. The height limit is 5 foot tall and the weight limit is 120lbs.

I like THIS VIDEO from the website better than than the ones I found on youtube.

Monday, November 7, 2011

New Feeding Tube Pump

The new feeding tube pump came in this afternoon. I hope this one is "THE ONE" I got it brand spanking new in th box. They did not having the carry bag for it yet.  The new pump is the Zevex Infinity pump.

We have only used it for 1 feed, but it was total bliss. Not ONE TIME did the pump beep saying it was clogged, I did not have to hit continue 100 times. It is hald the size of our old pump. I love that you can pull all the air out of the bag and it can actually be layed down flat (or if it is in the carry bag and falls over) it will not affect the flow of the food and my son is less likely to get air in his stomach from the pump. The Joey Pump had an easier display. I have not figured out if I can delay the feed on this pump. Jacob gets medication 30 minutes before he eats. I used to delay the other pump at bedtime so it would automaticly start after 3o minutes. I really like it and hope this is the pump he will use for a long time.

I am also currently researching gait trainers for my son. He currently uses a Rifton gait trainer. He does not do very well in it. He can move it forward, but it is very big and heavy. I recently came across a really awsome gait trainer looking online that I would love to is about the same price as the rifton. My physcial therapist is going to see if we can get our hands on one around here. It is called a Mulholland Walkabout Gait Trainer. I found a blog from a woman with a spastic quadriplegic son who raised funds to get one.

picture I found on the internet of a child in this style walker.
These are the videos the blog mentioned above posted on Youtube of her child in this walker I love it!

Tuesday, November 1, 2011

Feeding Pump Issues!

Argh! I am so tired of Jacob's feeding pump. I think we have been through at least 5 since he got his g-tube June 2010 and 3 of those have been in the last 4 months...and they are replacing it again today.

I make Jacob's formula. It is slightly thicker than commercial made formula, but not by much. It is still plenty liquid and has worked in his pump for months until the last few weeks. The pump alarms every 10cc for about the 1st 200cc then it suddenly wants to work. Go figure!

Today will be my 2nd pump in 5 days. We currently use a Kangaroo Joey pump. I have never tried any other pump, but the MD is suppose to write us a prescription today for the EnteraLite Infinity Enteral Feeding Pump I guess this pump is suppose to be pretty awesome. Apparently it even works if it is laying on it side. It does not require it to be hooked to an IV pole in an upright position like the Kangaroo Joey. I hope they can get it to me soon. Another mom I talk to says she switched her son to this pump with the thicker formula and has had no issues with it.

The kids had fun last night for Halloween. Ava was Cinderella and the boys were Rock Stars. I was a bad mom and did not take any pictures of them dressed up last night. I do have some pictures I took of Ava dressed up for a fall festival last week.

Got the boys hair cut yesterday. (Andrew's 1st professional hair cut) then I spray painted there hair green to go with their rock star outfits. They wore long sleeve red shirts with guitars on the front and black pants.