Happy Easter

Andrew, Ava, Hannah, and Jacob

My surviving triplets :-) We miss you so much Logan

Jacob thinks looking at TV is more fun than letting mommy take his picture.

The Easter Baskets L to R. Hannah, Ava, Andrew, Jacob

I bought this Carseat for Jacob in Feburay. It is graco. Not sure of the name off hand, but this gives him MUCH better support than the nataulus he had before.

Went to the manatee viewing area at the power plant in Apollo Beach. Jacob's Special Tomato stroller is working out well, I need to buy some extra lateral supports for him though.

That is A LOT of manatees!

My monster. I Jacob also recently got some new parts for his wheel chair that I want to talk about soon.

The new found love for our Rifton again. Thanks Rifton!

Jacob got a nice new present from Rifton. As I have posted priviously Jacob's size small hard plastic hip postioner was just to small and not working for us. This is the seat that goes between his legs. He was unable to use his gait trainer for more than 10 minutes without having deep red grooves in his theighs that eventually would cause a pressure sore.
We were blessed to have been donated a pony gait trainer which allowed Jacob to stand, biut he kept his legs in front of him instead of behind him and never took steps. It was working for us as a less restrictive stander.
Very recently we were blessed with the opportunity from Rifton to try the Rifton Pelvic Support. I was excited to try this. It is more of a sling between the legs instead of a hard seat. It is soft and non ridget material. My son looks GREAT in his Rifton again!!! His hips are postioned behind him again allowing him to be in a position to move his legs and make it across the room again. I will continue to update on how if effects him and his skin after being in it a few times. he was really excited to be back in his Pacer, giving him some mobility again. I truely thinks he understand that he can move in this rather he has the coordination and the vision needed to navigate it is another story. I am a happy mama to to see a huge smile on my face and my baby moving across the room again!!!!


***Update*** He still gets some deep red marks on his thighs after being in his gait trainer for 30 minutes, but it is not cutting into his legs like it was before. I hope I can do some more adjusting to make it better. He has not been able to get in his gait trainer for a few days because his g-tube site has been having issues and he has been in pain.

 

Just a Jacob update...

I haven't looked over my past few blogs, but I'm not sure I have given a real update in quite sometime. There is not a lot of new, but I'm going to breeze over everything since his life did a 180 degree turn around in July. I say this because it was the end of the vomiting nightmare!

So as I have post before (I think) Jacob had his nissin fundoplication only July 5th. July 4th was the last day I have had to clean vomit. I must say I don't miss it AT ALL. Since then he has gain A LOT of weight. He went into surgery under 30lbs and now he is tipping the scales at around 39lbs. We cut his food back from 5 bottles of Compleat Pediatric to 4 since he was gaining to much weight. He is in the 60th percential for his weight now. The beginning months were hard for him. He dry heaved a lot on bolus feeds. We slowly got him up to 3 solid bolus feeds a day over 1.5 hours each now. I flush him with water in between so he gets all the water he needs too. For anyone who has a child like Jacob the best 2 things I have ever allowed to happen to him is 1. The tonsil and adenoid surgery July 2011 and the nissen/fundo July 2012. The third best thing is his phenol and botox injections.

Going on to the phenol and botox. I love that my baby is no longer tight and his legs don't scissor anymore, BUT he NEVER takes steps anymore. I'm not sure if this has anything to really do with the phenol or just the weight gain and the fact that he is getting bigger and has less baby type reflexes. I never expected him to be able to navigate himself around the room independently with one. He physically and cognitively is not really able to do it, but it is nice to give him the opportunity to try and let him put weight on his feet. It is good for him.

He had his 2nd round of phenol and botox in September. We are about 4 months out. He still has wonderful range in his legs and heal cords. He was having a very hard time staying awake during the day and would randomly just sleep all day for days in a row then decide to be awake. With the permission of his neurologist and physical medicine doctor we decided to start weening him off some of the meds he was on. He had about 5 medications he was on on a daily basis. Reflux medication stopped after his follow up with the GI after the nissen. We were able to stop his synthroid after a followup with endocrine (we are still off and pending lab work soon to see if he needs it). He stopped the klonopine in late October as my 1st attempt to get him to be more alert and awake. We spent the month of November weening hm of baclophen. The neurologist says we can give it as needed. I give it to him 3 or 4 times a week total now usually at night. This being said he is now on ONE medication which is his seizure medication. We actually have an appointment in a week or so for a 3 day hospital stay for EEG and MRI for Jacob. We are considering weening him from the seizure medication since he has never had a real seizure that we know of. It is still unclear if he is having absent seizures and one has never been caught on an EEG, but they still diagnosed him with seizures because of the abnormal brain waves he has from his brain injury.

Now what was my point of this again....hmm...oh yes, The  phenol and botox as allowed us to get Jacob off all the sedating medication.s This boy is an entirely different child now. He is awake and alert. He rarely naps during the day. He usually takes his naps if he has one on the bus to school and home. His school has been pleased with how happy and awake he is. They tell me he is "chatty" all the time at school. He loves attention. He does not have that glazed over look anymore and actually seems to listen and kinda understand what you are saying to him. I think he is very aware of what is going on and understands what I say. If I am holding him and tell him to pick his head up he does. If I tell him to stand he does. He DOES NOT and will not show me any signs that he can use his arms with any purpose. I'm hoping this changes I would love to know he really understand and find a way to communicate with some sort of switch in the future.

This brings me to the next thing we have been trying out. We joined the Preemie Growth Project on October 28th. The basic idea is to see if correcting micronutrional needs helps with neuro muscular issues in child that were born prematurely and also helps with weight gain. Have we seen a HUGE difference? No. BUT there has been enough change in his tone that I keep giving it to him. Some people are swearing by it and have major changes in their children. In Jacob's case, we weened OFF medications to help him with his tone and he is looser now than he was when he was taking the medication. We have NO heal cord issues at all he has full range. He is able to keep his legs fully extended at the same time and he keep his hands open more with his thumbs out. Yes, these are all the same areas he had botox and phenol, but from past experience we would be knocking on the door for our next appointment for injections soon. He was very tight again after 4 months after the 1st injections which were done in May. By September/ October...I've lost track... when he had the 2nd set done he was starting to scissor again. His legs are GREAT still at 4ish months out! My only concern is that he does not spend the amount of time he used to on his stomach (he slept on his stomach pre-nissin in fear of him vomiting and aspirating on his back). I can not think of the muscle group but whatever the muscle is at the top of the thigh seems to be slightly tight. I say this because when he is in his stander him pelvis will not fully go into the part that is suppose to hold him when prone. His legs are strait, but he is always flexed slightly forward. Like the muscle has shortened from being in the sitting position to much if that makes since.

I was worried about this happening and even had the physical med doc order leg splints for him to wear at night. He likes to sleep with his legs bent and legs apart like a frog. I wanted something a little better than just soft knee splints. He rubs his chin raw if I leave him on his stomach to long now. So he has been a back sleeper now and does not get the same stretch on the hips he used to. Also in October (I think) maybe it was September or November...any who...He went to Shriner's for his follow up and they x-rayed his hips and his back and said they were still great and had no issues. I have brought up the the physical medicine doctor though that he cry A LOT when you stretch his legs and his hip joint pops very loudly when you flex his leg at a 90 degree angle. He screams and tenses up when I do the left side. I just feel like there is something wrong and I want them to investigate it more at his next appointment. Back to the splints. After MONTHS we got a pair of Dynasplint. I hate them. Jacob hates them. Jacob's skin hates them. PERIOD. He wore them maybe 3-4 times. They ate his skin and scared his legs no matter how much padding that lady tried to put on them. So we got a prescription for a different kind of leg splint. Don't know what they are called, but they are GREAT! It is basically a metal plate in the back that has a knob that adjust the angle from flat to curved, so if his legs did not go strait I could have slowly worked him to having them strait. They have a super adjustable and padded part that goes over the knee and then 2 soft wraps just like the regular knee immobilizer that wrap the thigh and bottom of him legs. Since he does not have heal cord issues we don't need to night spint his feet.

After my long ramble basically Jacob is doing great considering...no real physical or cognitive gains outside of an improvement in tone and being awake more. I would say physically he has back sliding a little. Because of the change in tone he has lost some trunk strengh and head control and like I mention he does not take steps across the room like he used to in the rifton or the pony gait trainers. He is awake and more alert. He smiles and laughs more. He appears to look toward me more, but still not directly at me. The teachers and therapist say they see improvement. The physical therapist said he self corrected himself during one of his sessions after about a month on the preemie growth project supplement. I'm not really sure what is working or not, but right now we seem to be on the up and up and I hope it stays that way. I hope with his new school environment and stimulation along with no sedative medication we see great things in 2013.

I just looked back on my previous post and I just wanted to mention real quick about his crappy health insurance anyone with blue cross and blue shield may know exactly what I am talking about. Our policy DOES NOT cover his tube feeding formula. He has medicaid as a 2nd insurance. The company that does the billing for BCBS (Carecentrix) does not bill 2nd insurance AT ALL PERIOD. SO it left me trying to figure out how the heck I was going to buy his formula which I believe is about $400 a month. (I used to do the blenerdized diet and would have went back to it, but a new baby and breast feeding has put that on the side line for now) Oh and his DME Apria could not bill medicaid either do to their contract with BCBS...it was like they built their policy out to screw people. I learned that medicaid requires all special formulas for children under 5 to go through WIC if you qualify. Well, we do qualify since we only have 1 income now.  So instead of getting his formula to come to my door every month, I now have the pleasure of driving across town sometimes with 4 kids in tow on my own to go to MONTHLY WIC APPOINTMENTS (not a fan of sitting in the WIC office, but love what they provide) to pick up his formula. They do not cover the full amount he needs and we were about a case 1/2 short each month. His GI office social worker was useless in helping me resolve the issue and even started to me that NO DME is going to just bill 1 case a month of formula and that I needed to just buy it out of pocket (Easy for someone to say that probably does not live off less than $300 for 2 weeks after bills for a family of 6) I found a new provider called Care Point Partners that has been WONDERFUL minus them sending the wrong size extention tubes 2 months in a row. They even package their stuff better quality. Our items come in these unually think boxes covered in bubble wrap on the inside. Our 1 case of formula come wrapped in bubble wrap in a thick box where Aprea just tapped that stuff together in the box they come in and ship them (we had lots of broken open bottles from UPS because of this and spoiled formula) Even the single bottles come in this little card board cut out thing. We even got a new IV pole. This one is super nice quality, not like the crappy folding one we have now. This is a heavy duty "real" IV pole. So, problem solved and Jacob has everything he needs again.

The goals for Jacob this year are going to switch a little...I'm less concerned with him sitting and walking. At this point I want to see him learn and communicate his needs. So, when he starts back to school next week they will be working with him on a 2 button switch toy. He has been out of Early Step for nearly 6 months now...it is time I stop being lazy and get him back to outpatient physical, occupational and speech therapy. This is actually my goal for tomorrow.

Thanks for reading my long update. I know it is ramble, grammar is horrible, and I bounce all over the place, but that is just how it is . :-)

ghetto stretching Jacob's legs He sat propped like this for 10 minutes

He is such a happy boy

He was so alert and happy on Christmas. I think he really understood what was going on.

LOVED his light

Ava was playing with Jacob...then he bit her LOL

My big boy sitting up in the swing. He laughs and giggles. Depending on his tone he can sit up like this.

Snug Seat Pony Pediatric Gait Trainer vs. Rifton Pacer Gait Trainer

Jacob has been very blessed to actually own both the Pony and Rifton gait trainers right now. Jacob has always had a rifton. He started with the mini and now has a medium gait trainer at 3 1/2 years old. Jacob requires a lot of support and needs a lot of prompts on his gait trainer. Over the past year he has had a lot of spastic issues with his legs and some major scissoring. We had a point when he was taking impressive steps and going quit the distance in his gait trainer, but after 2 phenol injects 5 months apart and a weight gain of over 10lbs and 1 major surgery since May 2012 the steps are nearly nonexistent.  We have been using his gait trainer more as a standing device. I personally do not like putting him in the actual stander. I like him having the freedom to actively stand and move his legs when he wants. The seat in the rifton has been a major issue with us over the past year at least...pretty much since he got his OWN gait trainer. The seat is not long enough and the taller and longer he has gotten it is harder to get him at the slightly tilted angle to encourage him to take steps. He likes to get his legs in front of him and this causes the corners of the seat to dig in his legs. I have yet to find away to stop this no matter how I adjust it and neither has his physical therapist. I know each child is unique and not everyone will fit a device the same. I am trying to give a review on these 2 device on how user friendly they are compared to who might benefit from it better.

As for the Rifton. The Mini and the Size 1 (at least the ones I had) DO NOT FOLD. They are HEAVY and there are a lot of parts to adjust. My son's gait trainer has

*the medium folding frame
* arm prompts and bars for his his hands to grip with Velcro strap to go around his wrist and for arms
* hip positioner (seat)
*ankle prompt
*chest prompt

So putting him in this device using all it has there is 4 Velcro straps for his arms, 2 clips to go around his ankles to stop the scissoring, and 2 clips on the chest prompt. When putting my son in and out he tends to get his AFOS/Shoes stuck on the seat and it takes an effort of twisting and maneuvering to get him out.
The Pros:
It is well made.
It has many options to customize it and different colors. The list of accessories is long and expensive
It folds in 1/2 for easier storage but still large, heavy and bulky (medium size and up)
You can lock the wheels so it does not move, you can make the wheels go in 1 direction and not swivel, and you can make the wheels only move forward so the child can not walk backwards in it.
Easy to take parts off as they are no longer needed. For example once a child can bear weight and shift their weight the seat can be removed, the chest piece can be removed etc.

The cons:
It does the job, I don't mind any of the features except the ankle prompts. I feel that they are restrictive and harder for my son to move his legs with them on. Without them his legs are everywhere...to the sides, walking on his other foot etc. He has nothing to keep him mid lined.
I have a very hard time getting it adjust just right.
The seat digs in my sons legs leaving red marks..I think he has the size small seat and simply needs the large.

The Pony gait trainer: This is new to us. I have had it about 3 days. Due to the issues with the pressure marks with the rifton my son does not get to use it as long as he used to. His school started working with him in the pony gait trainer.  I LOVE how simple it is and how user friendly it is. This gait trainer is also customizable but you don't really have the ability to take as many things off. This is definitely better for a child who may always need support of a seat.

The one Jacob now owns is pretty basic. It is the size 2 purple frame It has the chest support and the grab bar on the front. This one is so much easier to put him in once you have it adjust right. Everything is loosened and tightened by an Allen wrench that has a little storage spot on the back of the seat.

The things I love about the one I have: I love that the seat is padded and "saddle" like. It has a cushioned back to it that adjust to keep his bottom in 1 spot. The seat hooks up in the front to stop him from sliding his hips to far forward. I love that there is no way he can scissor his legs and makes him keep his legs more mid lined with his body. He still has the ability to put his legs in front of him in a "sitting" position but there is nothing for his legs to dig into. There is option hip supports, but mine does not have them. So he has the ability to spread his legs apart as much as he can. I LOVE that it is really simple to tilt him forward to prompt taking steps. The rifton I had to angle the chest prompt forward and constantly adjust the hip positioner (seat) to get him bottom higher up to make him lean forward. This gait trainer was just made for children like him!

Things I wish were better. Mainly the wheels they are tiny compared to the rifton and would be hard to use outside. I can not lock the wheels to only move in 1 direction. Apparently the front 2 wheels can be locked so they don't swivel, but I have yet to find this...I just read it online. :-) You also can not customize the colors. Each color represents which size it it. 0 is yellow, 1 is fuchsia, 2 is purple, 3 is red. Oh I also wish the front support bars to the frame were a little farther forward. Jacob gets his feet up on the bars and kicks them. This also does not fold. Everything can be taken off or pushed down to make it smaller, but then you have to readjust again.

It is so simple to put him in  and take him out of this one. No arms to strap in no ankles to strap. I simply put hi legs over the seat and the back of the chest piece Velcros closed and then has a snap clip that secures it.

It is late and probably not the best review in the world. Just my option. I am totally LOVING the Pony gait trainer!

BTW we were very blessed that the new gait trainer was donated to us by family who no longer needed it. I was planning on trying to buy one if he did well on the one he was using at school and now I may have a rifton to donate soon. I'm afraid to get rid of it just yet.

The medium Rifton Pacer

The size 2 Pony Gait Trainer

 

**UPDATE**

I just wanted to update how it has been going after using the pony gait trainer for a few weeks. I still think it is nice and easy to use. Not really sure if it is just me not adjusting it right vs. this still not being what will work best for him. Our problem being even with the seat being tilted forward, I can't get him to stop resting his feet forward on the bars infront of him. Atleast in the the Rifton I was sorta able to make him bear full weight on his legs. This one He just sits in the seat. I had taken the rifron out of the room and folded it up and decided to bring it back out. for standing purposes. It is heavier than the pony, but I really do like how much the wheels are more adustable on the rifron. (I think the pony now has better wheels than the one I have) As a temporay fix to stopping the seat from digging into my son's theighs, I came up with the genious idea to stick one of the mini pillow pets in the seat. I've been afraid to leave him standing in it for more than 30 minutes, but so far no more pressure marks. I'm hoping to get a bigger seat soon. Also, the company that we got the gait trainer from today is coming out to adjust his wheel chair. I'm going to see if I can get him to look at both gait trainers and see if he has any suggestions on what I can do to make them better for him. I wish the pony had something to make him keep his legs back. Also with his spastic arms he really needs arm promps that he can grip and strap in. All he does is twist himself in awkward positions now. I should check into some accessories for the pony gait trainer maybe. Anyway, we have both set up in the livingroom right now and I switch him between the 2 of them during the day now.



New stroller AGAIN lol

I bought a convaid lite rider the end of September used. It is a 14". He can sit in it for a short time, but really needed something with a recline. I found a post on Facebook with someone local to me that had a Special Tomato EiO stroller for $240 that was used twice. Her son was to big for it. We tried it out around down town Disney. So far I LOVE it!
Anyone need a Convaid $125 plus shipping lol

The Vanishing "Friends" of the Special Needs Parent

I've been feeling rather bitter lately thinking about all the so-called friends I used to have. As I look though my phone's contact list where I used to have a list to scroll down of people's contact info. People I used to hang out with, go shopping with, dinner together etc. Now those names slowly one by one have been deleted from my life and replaced with doctors offices, schools, and therapists' numbers. Where I used to have someone I could call upon at anytime when I was bored, feeling the need to go blow money etc, there is only a small handful of 3-4 people that have stuck by me and listen to my rants about my daily struggles.

In recent months I have really looked at who my friends really are.

• You have the true hard core friends that will go out of the way for you as I would for them dragging there 2,3,4 kids along with them. Your lucky to have 1 of this type friend in your life I am lucky to have 2 not counting my family members.
• You have your convenience friends...these "friends" new and old that only call or talk to you if they want something from you or have a question. Rather it be money, free food, extra medical supplies, baby sitter, etc.
• Friends of similar circumstance...I have made a lot of these friends local and distant. These for me are mothers of multiples or of a disabled child. Great for support, but most are not ones I call and talk to...mainly we all have to many children combine to see each other in person. LOL
• Co-worker friends. Yeah I was really disappointed in this area. I had a lot of co-worker friends. Used to go out and have a good time after work on the weekends, get invited to each others kids parties and various other activities. I was really hurt when I delivered my baby at the same hospital I worked at and not ONE person went out of their way that I worked with to visit or even call. I did get a baby shower before I left so I know they do care. I have little to no contact with most of these "friends" since I left my job 6 months ago. I do have a select few that lurk(on facebook) but we don't talk like we used to. I did feel good that I got invited to one of my old co-workers good-bye lunch after she was laid off. For the most part outside of a few facebook lurking old co-worker friends I have been abandon.
• Then there are the facebook only friends. I have people I have given a lot of myself to in the past that have friended me on facebook, and comment, but basically want to know your business but really nothing to do with you personally. I'm guilty of this myself. I enjoy seeing updates of old high school friends etc and staying connected.  I have facebook friends that I talk to more on FB, texting and phone more so than some of my local "friends".
• Then there are those friends that just flat out abandon you...people that you once thought of as family, people that you used to talk to on a regular near daily bases, that just stop calling and respond to text etc. This hurts. Makes me wonder what I did wrong. I feel like I am in a different "class" than some of these people now. I don't fit in their click because our incomes are different, to many children, children that aren't "normal", mainly just feel unimportant to them anymore. They have taken what they could from me and no longer have a need to talk to me.

This being said. I recently went down my facebook list of "friends" I have really NO friends that are not of facebook. It really opened my eyes to how many people have been in my life and moved on at one point. I have had a lot of people come in and out of my life. I realized then how little true LOCAL friends I really had. I have made quite a few friends from different parts of the country that have shared like stories as my own, that I can talk to about everyday life of for support. Tons of people friended me for updates on the triplets and Jacob in general mostly. I spent hours weeding though people, deciding who really should see what I post and pictures I post. The point of my blogs was to update on my family, so I don't really see a need for strangers to see everything in my social network. I unfriended a lot of high school people that I was never really friends with in high school, I unfriended lots of people that I had no freaking clue who they were, I unfriended people I once loved as my own family, but realized they don't really care about me or my children. My list of 250 people is down to a mere 100 or so...lol mere 100 he he...I think it is weird that I can actually tell you how I know each and every one of those people if their name popped up, but no way I could name 100 people I know off the top of my head.

After over 3 years of battling depression and financial hardship, I think I am finally ready to stand up again and move forward. I have been living my life in idle since I was pregnant with the triplets. Once they were born early, I felt the world revolved around their health and well being. Then after Logan's death, the world revolved around Jacob's health and therapies. poor Andrew has always been the odd man out and now demands his attention.  Now that Jacob is 3 and has lost home services. 3 of my 4 living children are in school now. I have had time to rest, time to think, time to regroup myself and wonder what is next. I still feel stuck, that I can't work and have lost my career for right now due to childcare and Jack's schedule. I'm ready to embrace my true friends, not enable people any longer that always wanted to take from me and were never there to just be my friend, maybe become more involved in my children's schools (though I think they hate me...true story), ready for walks in the park, lunch dates and to just live and enjoy life again with my children, my husband, my family, and my friends. I will no longer dwell on who I feel is not my friend anymore. I will simply delete them from my life. LOL I really spend to much time on facebook.

Convaid Lite Rider and Snuggin Go Too positioner

I'm a member of quite a few groups on facebook that has parents and caregivers that buy, sell, and donated medical equipment. Since it is illegal to sell something private insurance or medicaid paid for, a lot of people give away equipment for just the cost of shipping. There are other people who will charge their co-pay...and then the trolls who lie and say they have a co-pay and sell stuff they don't pay for, but giving everyone the benefit of the doubt I try not to judge, but seriously people will post that they have 20 cases of formula for "$20-50 co-pays" Really? You paid $50 for something when you already had 10-15 cases of the same thing at home...I think not...I would tell my DME not to send it. Anyways started ranting off subject...

I tell you this because I scored BIG TIME in the durable medical equipment department! I happened to see a post about someone selling a Convaid umbrella style wheelchair stroller. Well, they were asking for a donation for them to make to the Make a Wish Foundation and $25 for shipping. So, for $125 I used some of Jacob's savings to buy this stroller for him. I was hoping to get a wheel chair van this year, but it is just not going to happen unless an act of God happens. His wheel chair is complicated and extremely heavy to lift and put in the trunk of the van (and it messes up how everything is positioned). I thought this would be a great option for doctor appointments when I am alone with him and that it may work better than the Seat2go we have when we go out to dinner. Taking him in his actual wheel chair to dinner brings a lot of stares and like I said it is so heavy to load and unload and the Seat2go works well for the most part except we end up having to carry him in (he is 34lbs now) and the seat along with 3 other children etc. So, this was my justification for spending the money. We are going to try and get a grant from our local branch of Center for Independent Living to get a wheel chair lift on the back of our van. I actually plan on doing the paper work for it tomorrow, so it will help when I have to pick him up from school when he is already in his regular wheel chair.

The wheelchair stroller we bought was the Convaid Lite Rider. This thing base price retails for over $1700 and I got it for $125!!! This chair is really meant for someone who has better trunk control and I was worried  he would need more lateral support than this would offer him (because it has none) so I had to think of what I could do to help. I figured if it did not work I could just resell for what I paid. So my initial plan was to buy a Special Tomato Soft-Touch Seat Liner but I worried about if it would be a bigger pain to weave and unweave the straps through the seat liner  when folding the chair than it was worth....once again on the facebook group someone was offering one that appeared to be a size 3 seat for $50 plus shipping. I bought it $65 including shipping.This was great because I was actually planning on spending $160 buy it new. It came in the mail the same day as the stroller and it looks like it may actually be a size 1...but it did fit in the seat nicely and gave him the lateral support. As I suspected it was going to be a huge paid to thread the straps through it EVERY TIME when we used it.

I had a back-up plan though. I ALSO bought a Snuggin Go Too

I found it a little cheaper than the website for $32 with free shipping on Ebay. I did not buy the bottom piece seen in the picture for the legs. the shoulder piece is adjustable and it has a ridged back to it with  foam that is kinda to soft to give excellent support. I really like this though...it could be better. It does not give wonderful support, but does give enough and works great in our Baby Jogger City Mini double (best stroller EVER)thay he normally sits in and his Graco Nautilus car seat. The way the Convaid is made with the deep seat it just works...at least for now. I have the larger 14 inch stroller which is actually meant for bigger kids I believe 8-12 years old, but with everything on the smallest setting I think I can get a few years out of it before I have to buy the addition head rest etc. Convaid makes lateral supports and H harnesses etc, but I find these options much cheaper. The stroller came with shoulder straps and a padded crotch harness. The next thing I am going to do is get 2 padded seat belt covers and a heavy duty piece of velco to sew onto it to make my own H-harness then my stroller will be PERFECT!

Convaid lite rider

It weighs around 20lbs I think the smaller size weighs 16.

This was the 1st day I put him in it. I love how I have the straps adjust just right that they are tight enough to stop him for leaning to the side to much but I can still unsnap him and pull him out like he was coming from his car seat. Not having to unbuckle 4 clips is great

I like the way it pushes even as an older used chair. It is a little short for him at a dinner table, probably wouldn't be fore an 8 year old, but for him his head is the only thing that would be above table height. I'm really happy with this. It folds up nice and small and lays flat in my trunk, so I can now keep it, my double stroller, and my daughter's snap and go stroller in the trunk of our van. I will probably use this instead of my Seat2go it is less complicated and supports him better. Anyone looking into a convaid stroller I think they are very well made and great for the right kids. I'm not sure Jacob will still be able to sit in this when he is 8-9 years old without me paying the crazy cost of the better lateral supports and head rest, for now it is great.

I also wanted to update on his latest Neurologist visit. I discussed with his doctor about his sleeping habbits. He sleeps all morning, is awake all afternoon, and often did not fall asleep until 2-3am.

This time last year he was on A LOT more meds than he is right now. Toward the beginning of the school year He was on baclophen 3 times a day, trileptal 2x a day, and Klonipin at night. I weened him off his afternoon baclophen and his night time klonipin toward the end of August and early September and did not notice a difference in his sleeping habits and it also made no difference in his tone. So, the neuro suggested we take away the morning baclophen and cut the dose of his seizure meds down in the AM (we also discussed weening him from seizure meds of the next 6-12 months).

WOW! The difference is AMAZING. He went from sleeping through school almost EVERYDAY to being awake, alert, and looking around the room. The teacher says he now laughs, smiles, and is "chatty" all day long. She said he is tracking objects better and participates with a lot of help and only takes a 30 minute nap now. He is also better about sleeping at night and I have stopped giving him the melatonin I had been giving him in efforts to get him to sleep at night. I am waiting for the neuro office to schedule him for another 24 EEG and a MRI. This is being done to determine if he truly does have CVI and to see if he is having seizures or not. She wants a base line before we ween his meds to much. We both agree that we don't think he is having seizure and hasn't really ever had a seizure, just abnormal brain waves, so over the next 6 months to a year he MAY be off ALL MEDS.

What will we do about the spasticity? We are working with his physical medicine doctor. Early September he received his 2nd round of phenol and his 3rd ever round of botox. The combo of phenol and botox has worked extremely well for him, way better than any oral medication has. I think phenol and botox injects can manage his spasticity better than keeping him drugged on a medication that does not do much for him anyway. The down fall to the phenol is that the medication burns the nerves causing the tightness in his legs...it regrows over time...being the reason we have to repeat it.

Things I have noticed since his 1st injection of Phenol in May.
1. The tremors in his legs 100% went away.
2. His legs are MUCH weaker, but he still stands in his gait trainer, but he is much more floppy
3. He used his tone to help take step, he rarely takes steps in his gait trainer on his own now. He kicks and lifts his legs when sitting, but when he is standing and he is pushed in the gait trainer he used to start moving his legs and walk across the room, now his poor legs just drag behind him. It truly shows how weak his muscles are.
4. The phenol was probably over done in his left leg. Instead of his legs scissoring and being stiff, they are now floppy and his left leg rotates out and kinda does its own thing. You can kinda see what I am talking about by what his legs is doing in the stroller picture. His legs is also about 1/2 inch shorter than the other leg.