Our Little Jacob

This is a blog detailing the daily struggles of having a child with Spastic Quadriplegic Cerebral Palsy. My son is 1 of 2 surviving triplets. My son and his identical twin brother Logan who passed away at 6.5 months old had Twin to Twin Transfusion before they were born. They were delivered at 28 weeks to try and save all 3 of their lives. I have a hard time connecting with other parents raising children with severe disabilities so, I thought I would branch away from my other blog to blog just about my son and his special needs in hope of reaching out and supporting other moms dealing with similar issues.

Thursday, December 13, 2012

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

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.

Saturday, November 24, 2012

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

Wednesday, November 7, 2012

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.

Wednesday, October 17, 2012

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.

Thursday, September 27, 2012

Moving about

Jacob was sitting in this chair. I turned my back to change his sisters diaper and he managed to wiggle himself into this postition. He was kicking his legs making the chair rock laughing. I may let him do this more often lol. Jacob had phenol and botox on May 2nd and he goes again tomorrow less than 5 months later for another round. He is not near as tight as he was before, but within another month or 2 he would have been. We are also having some issues with getting his formula provided, but I will post about it when I'm not on my cell phone.

Tuesday, August 28, 2012

Tumble Form 2 vs. Special Tomato Soft Touch Sitter

So I poured over the decision to pay out of pocket and try the special tomato seat over just dealing with the Tumble Form floors sitter I already own that was provided though Early Steps for my son for several months. There are 3 main reasons for my decision to change seats. 1. The harness in the Tumble Form is HORRIBLE 2. It was heavy and I hated moving it from room to room and I thought the base with the wheels was pretty nice on the special tomato. 3. The tumble form cover is very sensitive...our chair being less than a year old  already has a rip in the base.

There is a great link from adaptive mall that tells you the difference between the 2 seats HERE.

I like that the Special Tomato has a 5 year warranty. The harness is honestly what sold me. Our issue with the tumble form was the straps cutting into my son's neck and him leaning to the left no matter how tight I made it. There is slightly more side support in the special tomato seat, but he still leans but not as bad. I LOVE the harness. It does not cut into his neck anymore. He does not hang to the side and with the new crotch strap he can not arch and make himself slip down in the seat. I have found him on several occasions in the tumble form seat where 1. someone did not put the lap belt on at all or 2. It was not tight enough and he had manage to slouch out of the seat to the point that the clip that goes on his chest was under his neck. Also from the arching the straps were leaving a constant bruise or rub marks on his hip bones from the pressure of his arching or the tightening of the straps. He had bruises were the buckle was as well.

I spent $440 out of pocket for the chair I bought my son...$100 more for wheels on the base, which is crazy..There is 2 vertical screw holes on the base and you have to add the wheels yourself when it arrives in the mail...probably could find some at the hardware store cheaper.
Tumble Form 2 Floor Sitter

Special Tomato Soft Touch Sitter

The holes in the seat are in the same spots minus the special tomato having a 5th hole at the bottom for the crotch piece by the leg abductor making it 5 point. Hmm outside of my love for the wheels on the new base, I probably would have been just as happy ordering the harness for $29.99 from adaptive mall for the special tomato and putting it on the Tumble Form. I do believe it will work perfect! The only difference is you would have to take of the crotch strap piece off which is removable. I like that the belt is thinner personally and that the harness is padded. Seems like we get a more secure fit. The Special Tomato chair also has 2 extra straps attached that you can attach to a chair like a booster seat at a table..this is nice, but I honestly was able to do the same thing with the tumble form. I just unhooked the back strap and weaved it though the back of the chair before I tightened it down.
Love the seat..not really happy his feet hang. My children enjoy pushing him around and the seat is softer and you can squish it with you hand compared to how firm the old seat is. I still have issues with the strap across his legs causing red areas so we pad it with a cloth diaper now. This was the 1st time he sat in the new chair

The old seat. He was sitting pretty good on this day, but usually he leans to the side. The chest strap piece moves up and down and does not allow a tight fit to keep him sitting strait up. Like I said I think the special tomato harness will work on the tumble form seat if anyone else has the same issue and it would be a much cheaper solution that buying a new chair. I just HAD to have the base with the wheels though LOL

Tuesday, August 21, 2012

Jacob's 1st day of school and bus ride

Well, Jacob actually started school 2 weeks ago...naturally he slept through it.

Jacob's 1st day of school at Achievement Academy 8/6/12

Jacob's 1st wheel chair lift and bus ride 8/20/12...still sleeping

Jacob's brother joined him at his school on 8/10/12...doesn't he look thrilled?

Jacob's NEW CHAIR came in 8/14/12 LOVE this chair. The harness is so much better. like that it has a crotch strap so he can't arch in it as easily or slide down. It is softer and not as hard. Best of all it has WHEELS on the base! We bought this at adaptivemall.com  He also got new glasses...still don't see a difference in his vision.
Jacob leans to the left almost all the time. Drives me NUTS we go this Thursday to Shriner's to see if his spine is the issue.

Thursday, August 2, 2012

3 years old and school is starting soon!

I can't believe both my baby boys are 3 years old already and they will both be going to ESE preschool. Jacob is going to a special charter school that I am super excited about. He starts MONDAY!!! We go for his orientation tomorrow. He is getting yet another new pair of glasses that will hopefully stay on his face and help him see. He is doing great since the surgery. He was 1 red area that has recently shown up in the middle of his incision that I am watching. He looks healthier over all...not so sickly and dehydrated. You can tell he is gaining weight when you pick him up. He is a heavy little boy! I am looking for info on how to get him on the waiting list for the state Medicaid waiver program. I hear the list is years long. The long awaited dynasplints he has been waiting on for his legs have so far been a huge disappointment. Night number 2 THEY TORE HIS LEGS UP!!!! So now we wait for them to come out with new padding. They are nothing like expected and $2800 a pair is crazy for what they are. They still allow his legs to bend, but apparently give tention to encourage him to keep them strait. I thought they would force a good stretch. Hopefully they will work, but right now I am really disappointed. The night they left his legs scabbed I made sure I could fit my fingers under the straps and that they were not to tight, but I guess the pressure of him bending his legs all night did it. I am adding pictures at the bottom but I am posting from my phone and have jo clue what order they will end up. I will post again on his 1st day of school.

Tuesday, July 17, 2012

Nissen Fundoplication

Way behind on posting! Jacob had his Nissen Fundoplication done on July 5th. He did WONDERFUL. He went back around 7:30 am and did not get out of recovery and into his room until around 12:30. The 1st days was the worst. He was crying a lot and was not allowed to eat. We think he was having some withdrawals from being off a few of his medications that could not be given IV. They gave Valium to help with that. Day 2 he was back to his normal self for the most part. He did not require anymore pain meds by day 3 and we left the hospital on day 5. He still has his gaging and dry heaving episodes, but NO VOMIT! He is already gaining weight. He is 30lbs now! This big boy will be 3 years old tomorrow (July 18th) Jacob seen the nurse practitioner today and they released him to go back to normal Jacob activities including full baths. :-)
Day of surgery just out of recovery

Day 2 watching TV

Day 2 He earned diaper hand after knocking his IV out. Smiling for Mickey Mouse Club House now
The day we left he hospital. We switched the long tube back out to his AMT Mini One

Riding home from the hospital
I've been a little crafty lately. We made a new head rest for Jacob's Seat2Go with the help of Jack's aunt. She has co workers the work metal.  I also made him and a friend a weighted blanket. These are his birthday gifts and of course he will get another Mickey Mouse DVD
The head rest that was custom made for us

The new improved head rest in Mickey Fabric and the old one is the blue 1 above it He was constantly getting his head around the old one

The weighted blanket I made Jacob

The weighted blanket I made for a friend

Wednesday, June 20, 2012

Surgery Date

Jacob is having a nissen/fundo July 5th. I worried, but can't wait for it to be done and over with. I am praying for exceptional results!

Monday, June 11, 2012

Drive Medical Seat2Go Small Vs. medium

For anyone out there like me that searches all over the Internet trying to find the best product for their child and are unsure of sizing I though I would take pictures of the 2 sizes of the Seat2Go while I have the chance. I recently bought the small size for my son who is 39inches and around 29lbs. As previous post show he was just about to tall for the small. So, I searched the Internet and found a medium NEW for 1/2 the price on Ebay. I was surprised how much wider the seat it, but not as tall as I thought it would be.

I also notice on the small older seat there is 2 straps that secure it to the chair 1 on the bottom 1 on the back. The bigger seat only has 1 on the back. The bigger size with the wider base looks like it could be a better floor sitter than the small. My son being a little top heavy in it was able to make himself fall sideways unless I tucked him into the corner of the sectional on the floor.

Sizing: The Small Seat2Go measures 8" inside WIDTH x 9" inside DEPTH x 12" inside HEIGHT, while the Medium Seat2Go is 12" inside WIDTH x 12" inside DEPTH x 14" inside HEIGHT. 

The new seat

Every brace he has except for thumb splints We were working on long sitting and stretching leg muscles

Taking a dip in Jacob's pool
He got really mad when brother and sister splashed him going down the slide

Saturday, June 9, 2012

Moving Forward

I am loving getting to stay home with my baby boy now. It has been a month since I worked and his baby sister turned 1 month old yesterday! We have been dealing with all the government paper work over the past month. Prior to me not working, we qualified for no help with Jacob due to income. As I have ranted before I don't expect the government to support my child, but with high health care costs unless you have a high income it is nearly impossible to cover the co-pays and procedures!

The great thing now is Jacob does qualify to get his SSI back as of June 1st. We had to fill out all the paper work again to have him deemed disable again since it has been more than a year since we qualified. He was approved in less than a month PRAISE GOD! The biggest part of him getting his SSI back was to get his medicaid back to help cover his costs. He is covered under my husband's private health insurance and now medicaid will cover 2nd!!!! It was nice not having to pay $150 to pick up his prescriptions the other day. Best yet, all the procedures he had done in May are COVERED as well. They started his medicaid from May 1 instead of June 1st!

We have an appointment next week with a surgeon to move forward with Jacob getting his fundoplication. Not sure when it will be done. We have been holding off on getting it done for so long because we could not afford the cost of having it done. I look forward to the day I don't have to worry about him vomiting every day and worrying about his lungs. On this note not sure if I mention the results of his test. We were told that the Ph Probe study indicated he did need the Fundo. The gastric emptying study on the other hand came back normal according to the nurse even though the tech told my husband he faild the 1st hour and nearly failed the 2nd. His GI doctor has been out of the country so hopefully we will be able to tell me more about this later. They are not going to refill his E.S.S which DOES make him vomit less...

We had his IEP for his new school this past week. We met with his teacher and the physical therapist at the new school. I pray things start to click with him there. He will have constant stimulation from 9am-2pm Monday through Friday. Then we will start getting him out patient therapies since he will no longer have any early intervention services after July 17th.

I ordered him the next size up in the Seat2go. It should be here on Monday. I am hoping I am not wasting my money and he fits better in this one better!!!

Wednesday, May 30, 2012

Wednesday, May 23, 2012

Gastric Emptying Study

Jack took Jacob to our local hospital for a schedule gastric emptying study today. He went without his E.S.S. Gran for his undiagnosed gastropheresis for 24 hours...(I begged the doctor to try the med about a year ago because I researched and he had all the signs and symptoms of gastropheresis and he has been on it ever since) and he also went without his reflux meds for 12 hours. My husband was at the hospital with him FOREVER. It was scheduled for 1:30 and they did not get home until 6:30....there was a lot of waiting going on. Anyways once he got back to nuclear medicine they gave him the food with the contrast and left him under a machine for an hour. They only gave him 50cc. Apparently after the 1st hour he had very little digestion of the food when he should have digested at least 50% in 1 hour. So he had to sit under the machine for a 2nd hour. My husband did not really tell me what the 2nd hour showed except that his digestion was better. I guess they also caught one of his coughing near vomiting episodes as well. He was told the results would be back in 2 days. So I will call GI of Friday and see if they have the reports and then what his suggestions are for suregery The question being does he need more than a nissen done?
I don't think I have posted on here since I had the baby. On May 8th we welcomed a 9lb 1oz baby girl into our family. Jacob is a BIG brother! With the new addition to our family, I lost child care...so I left my job as of May 6th. This is good and bad. We loose the better of the 2 private health insurances we have through our jobs. My husband put the kids on his insurance which puts quite a dent in out budget and sadly yet happily we qualify for some government assistance again. It is kinda a crappy situation. You either have to live dirt poor and have the government help support your family and pay your medical bills or you work your butt off and pay the outrageous costs of health care out of pocket while you are mad that other people get a free ride. LOL Well, I would not consider us getting a free ride by any means. We will continue to keep Jacob and the other children under my husband's insurance because I just feel more secure knowing it can't be taken away, plus he can see a larger variety of doctors. I applied for medicaid and all we got was a share of cost of $4600 which is way more than we make a month....think I must have done something wrong. The baby and I have temporary medicaid. Not my goal..really needed Jacob to have that secondary insurance. I applied for SSI again for him. It has been over a year since he received any benefits, so we have to go through the entire process again. I had the phone interview yesterday. I was on the phone with the lady who called for an hour and a half! I have to give proof that we still pay on our 2nd vehicle so they can exclude it and I have to show proof of the value of the burial plots we pay for Jacob, my husband, and myself that are next to my son Logan's grave. I think it is crazy that they even need that as an asset!!! Then it is up to the state to deem him disabled again. Depending on the SSI for Jacob to get his medicaid back! He will NEED the 2nd insurance for when he has his nissen surgery in the near future. I can't pay the out of pocket cost of the private insurance. IT IS CRAZY! I hope I am doing the right thing. In the mean time I also applied for our State kid's insurance. I have known people who have high cost private insurance that qualified, but not sure how it will go. I am willing to take ANYTHING to help pay for his cost at this point. I can't wait until this is all over.

I can't wait for them to figure the GI thing out. I want to know if he will need the surgery to help his stomach content empty fast and the nissen to stop the vomiting, or just the nissen etc. I hate that he has to go though major surgery in the near future, but I look forward to the positive. I'm sure he will be glad not to have to taste the vomit and nasty unflavored formula. I hope the surgery WORKS!

Monday, May 14, 2012

Phenol and Botox update

There is definitely a noticeable difference in Jacob's arm and legs. More from the phenol than the botox at this point. The muscles that got the phenol are loose. He  has not scratched his face in weeks. His legs are not crossing like they were before. When he stands in his gait trainer the muscles between his legs may be to loose. His legs now slide apart like he is doing a split, but he can pull them back together and take steps still. He is not crying like he used to and he is not arching which tells me he must be more comfortable. I do not know if it really has anything to do with his arms and legs injections, but him being less ridget and more comfortable I think has calmed his vomiting down. He has vomited but goes days in between his episodes. Overall I am very impressed. He still want to walk on his toes though and he still wants to keep his hands clinched.

Wednesday, May 2, 2012

Arnold Palmer Hospital

We finally got out of recovery and up to a room around 11am. His legs still feel pretty tight...hopefully it will improve. I was expecting to see more range. It is still an effort to bend his legs and pull them. I know the botox will take longer to work, but I was told the phenol would be right away. Only difference I see is in his arms. He is letting them hang and not keeping them against his body. His legs are still in a semi bent position even when laying instead of laying flat, but they say not to stretch him for 3 days. He has a barking cough from being intubated and I think that is causing him some discomfort. I got the results from the endoscopy. He says the esophagus and duodenum (1st part of the small intestine)  were normal. There was some patchy inflammation (gastritis) on the inside of the stomach, but no signs of damage or ulcers. They took biopsies. He finally woke up around 2pm today. He is sucking on his pacifier and watching TV now. The Ph probe will come out tomorrow morning, then they will do a gastric emptying study. After that is complete we can go home. So, we expect to be out of here tomorrow afternoon.

The bottom picture is some of the images from the endoscopy. I think seeing the inside part of the g-tube is pretty neat.


We are in the surgery waiting room waiting for Jacob to go back for his procedures today at Arnold Palmer Hospital. Hoping his legs are much looser after today and the GI studies will give us some answers.