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, October 24, 2013

I've been stroller shopping AGAIN! Advance Mobility (Baby Jogger) Liberty

I have a small list of expensive items I have been saving up for for Jacob...most I was planning on buying by income tax time depending on refund amount etc. I have been drooling over a Liberty stroller which I think I have mention on here before. I also need to get him a special needs car seat. I heard insurance does not pay for them, but we seen a new physical medicine doctor today (or old one is moving out of state) and she said she has seen them covered. So tomorrow I make an appointment for Jacob to see the seating specialist to look at his wheel chair and for someone to go over equipment option with us because he is starting to outgrow some equipment. We are for sure in the market for a new stander. Not sure if we will go with the Tumble Form 2 again this time.

While browsing Facebook special needs equipment sell pages I seen someone list a Liberty stroller. I was 2nd in line for it and the 1st person passed. I got it and I am REALLY THRILLED about it. It is bigger than I expected and is not tiny and compact like my single baby jogger city mini GT, but most of the features are exactly the same. Similar harness, same quick fold release in the seat, adjustable handlebar. It does have air filled tires so it rides better. It is heavier and more awkward to push as well, but I think that is just getting used to it. I was able to push it easily at the park through the mulch with 1 hand while holding my toddler with the other hand. It has more of a reline in the highest position and it does NOT lay as flat as the baby stroller do. It is still WAY BETTER than the Special Tomato stroller and much larger and better than the convaid we tried as well. Since the stroller is a little big for him he does seem to need some kind of side supports I need to add. Sure they make some for some high price...I will make my own.  He like to lean left. He did okay with the Snuggin Go Too insert, but that is a little to flimsy for what he needs.

My next purchase is to go up as size on his special tomato seat. I really LOVE that seat. It can be used in some many situations for a special needs child. I actually might use it as the stroller insert eventually when I have 1 to keep at home. We have had our special tomato chair for awhile now and if that thing was to break in 1/2 right now (I'd die) but would say I have well got my moneys worth out of it already. I use it for another special needs friend I take care of who needs even more support than Jacob so it is used A LOT.

*  We us it at the park in special needs swings. My little friend I watch likes to curve his back forward and will bang his head even in the swing at the park so the size 2 seat fits perfect in the swing to give him a soft secure place to swing.

* We use it in restaurants so he can sit at the table with us and also at home for when we try oral feeds.

* I use it in the back of shopping carts and if I am lucky enough to find the 2 seater shopping carts that either look like a car or just have the bench seat I am able to strap the seat to those since it has straps attached to it. This saves me a lot of grief from him constantly falling over in the shopping carts that he can still fit in and makes shopping much easier.

* We travel with it and take it to friends' houses even without the base it gives him a secure place to sit even if we place it in a recliner or the couch. Jacob is very active and kicks and wiggles his body to the point of making himself fall over and eventually end up on the floor if not strapped to something.

At our appointment today at Nemours in Orlando I was happy to hear the physical medicine doctor there Dr. Reid does PHENOL. We were seeing the doctor at Arnold Palmer and they have not been able to do phenol in a year. Jacob is not really at a point of needing phenol again right now. He has a few tight muscles but has full range of motion. We did botox on 9/26 and haven't notice any real improvements. I think he will need phenol again in the next 6-9 months though. I was really relieved to know I had it as an option again. I was ready to drive hours away for it. She was wanting to increase his baclophen again in which I told her no. I'm not a fan of my son being so snowed on meds he is asleep or 1/2 on conscience all day. Our medication routine is working okay. I would like to see him a little less tight, but taking away his alert time during the day is not an option for me. She mentioned giving him a new medication that I had never heard of I think it was Zanaflex.. She told me it was less sedating than Baclophen, but Dr. Google has told me otherwise. He also needs blood work on a regular bases to check for liver failure why on it. Not sure I am willing risk liver failure....but hell all the other meds have side effects too.

Wednesday, July 31, 2013

Free Diapers and New Leg Braces

Today was a REALLY GOOD day! From my understanding my son could not get diapers paid for by Medicaid/CMS until he was 4, plus he had private insurance until April 2013 and medicaid as a 2nd insurance and it was always a huge struggle to get them to pay for anything. Now my son has medipass and CMS and things are MUCH better and I have no issues getting anything approved (so far).

So, I called his doctor today. (He turned 4 a little less than 2 weeks ago) The doctor wrote me a script for 150 diapers a month and took it to a local supply place our CMS social worker referred us to. They were really great they actually gave me 180 diapers and chuck pads for him to use at night. They told me if I switched all of his medical supply needs over to them they would give me a free pack of diaper wipes for each case of formula he had. This offer is tempting, but not really in the mood to have get the scripts again at the moment. They will also deliver everything. Today I picked it up.

We have been trying for over a year to get leg braces for Jacob to wear at night. We tried 2 different knee immobilizer type advices and neither worked for him. So SOMEONE FINALLY LISTENED TO ME. Last visit with Shriners they finally said they would make use custom leg braces. He now has braces that go from his feet up to his thighs to wear at night. Hoping this will help him not need to get injections in his legs so much.

On a side not I recently read that children with certain qualifying diagnoses (in the state of FL) can get diapers paid for through insurance before the age of 4. So, I asked today at the medical supply place for a friend and they said as long as the child is on CMS they CAN provide diapers at any age with a prescription. Dang and to think I have been buying diapers all this time ;-)

They gave me 150 chucks pads and 10 packs of diapers in size 6 with 18 to each pack. I used the 1st one tonight. They seem kinda thin. They are definitely no Huggies, but hope they work well. They look comparable to me to the Target brand I buy when money is tight and I have no coupons.

Saturday, June 15, 2013

My 1st attempt at using a battery interupter

I mutilated the vibrating snake special needs toy but it WORKS
Unfortunately I haven't found another toy in my house that doesn't need a button to make it work. I know their are ways of bypassing these buttons, but I haven't jumped into any of those tutorial videos yet.

Wednesday, June 5, 2013

Switch Toys made EASY and another great resource

I found myself browsing all the facebook pages I am on for special needs children. I'm in a great group that usually has tons of ideas for different toys and other items for special needs children the link is HERE.
That being said someone posted a link to a blog that is just great has a ton of "out of the box" ideas for taking care of their special needs daughter the link is HERE.
While reading her blog she had a a tutorial about switch adapting a toy. This is where I discovered what battery interrupters were. I thought that you had to do some crafty wiring to adapt toys. I didn't realize it was as simple as turning a toy to the "ON" position and slipping one of these  nifty little things in between the battery and coil. This will only work for toys that have an on and off switch not ones that you have to push a button to make them light up or turn on...those I guess you need to do the fancy wiring to. So, I searched the Internet for the best price. Of course ebay had none that I found. I found a website for $10.78 each BUT shipping was $9.80 (total rip off) I quoted a few other sights as well and some had shipping as high as $14 including Amazon.com...so without searching for hours I think I found one of the best prices. I bought 1 of each 1 is for AA batteries one for C, and D. Total cost was $31 and I like that I was able to check out with paypal. I just ordered them tonight and I am super excited to get them in and find some toys that I can use them with.
I found this LINK to make your own battery interrupter.
Another great link for Teaching our special needs children through switch adapted toys HERE. I'm going to have a lot of fun with these when they come in the mail!
I'm currently research different toys I could possibly uses this with so far my favorite is the bubble machine. I have lots of toys on hand that will we have bought for him over the years that are all going to have a whole new life to them.

I seen this for $65 adapted on ebay $23.47 on Amazon This was actually on my list to buy off ebay for his birthday.
Here are a few ideas I seen with build in switches that cost significantly more than the regular price.
Seen this with built in switch for $44.51 on Amazon it is 13.29
The bubble machine
 Today was also Jacob's last day of school for the summer this is his and his brother's 1st day together of school and the last until next year. They look thrilled lol

Saturday, May 4, 2013

Jacob got a new changing Table

My friend Jill has a co-worker who's son is a furniture maker. They came up a plan several months ago to get supplies donated and my friend offered to help pay for material. A few weeks ago my friend and her co-worker delivered us a beautiful gift. It came just in time as our baby changing table had finally fell apart and was not usable. I had been changing the children in the kitchen on the counter on a changing pad for almost a week. My friend said she did not have to pay anything and the the gentlemen who made my son's table donated all the time and lumbar to make it. The foam was donated to him when he went to purchase it and told them what it was for. What a Blessing they have been to our family. It is so wonderful to have a table that I can change my son on without his legs hanging off the end or fear of it collapsing when one of my children were on it. It will hold him for many years. I am so grateful for the generous gift to my family. Thank you!
Jacob's 1st time on the table

Getting it all set up

My Jill trying it out. :-)
Anyone that know me in real life knows I have a huge stroller addiction. I think of all the different stroller combinations that will help make our lives easier. We have a Baby Jogger City Mini double stroller that we bought early 2010 with income tax. By far one of the best investments I have made in baby gear. I've been through several "cheap" single strollers that never last long. Ive had triple stroller, triple sit and stand strollers, a quad stroller and a Valco Tri-Mode double with the 3rd joey seat which was great but didn't work for us or Jacob. Several month ago I 1st invested in a convaid stroller for Jacob that did not give him the support he needed, so I resold it for what I paid for it. Then bought a the Special Tomato stroller. We have been using this ever since. This stroller is still very large and takes up a big chunk of our truck space. It also not very easy to push. The wheels just aren't right. I'm not sure if it is just my stroller or all of them. The wheel don't swivel right and constantly have to jerk it around to align the tires to go or turn. It is a cheap option (in the special needs world) for a stroller that holds a larger child and has some support. The lateral support is not the greatest. I still have to add an insert on top of the existing support to make it better. Overall it is a 3 out of 5 starts for us. In the future I would love to get the Baby Jogger Liberty. I find it hard to drop $1000 on a stroller so that will be many moons from now. Back on track. So Jacob's sister Hannah is going to be 1 in a few days and I was really looking for a single stroller for her as we use the snap and go Graco frame and car seat for her still. (another thing I LOVE) I started searching craigslist weeks ago to find my perfect used "new" stroller. I am a stroller snob and must stick with the best. I had narrowed down between the baby jogger city mini single, the GT model, or a Britax B-Agile. Already owning a baby jogger I was leaning more toward that. So, I happened to find a GT model city mini for sale for 1/2 the retail price that was less than 6 months old. I started researching the difference between the 2 and learned that the GT model goes to 65lbs instead of 50 and the seat is a little larger and more padded than the regular city mini. Also it has all terrain tires! Still has the 1 hand fold, folds super small and flat, reclines almost flat, had the super big canopy, and the GT model has an adjustable handle and the basket is easier to get to. I'm in love. Can't you tell? Well Jacob is 40lbs, but quite tall. So then it occurred to me that I could ditch the big Special tomato add the insert into this one and HAVE TRUNK SPACE AGAIN! I can now fit my double stroller, my Graco car seat frame stroller, and my single city mini ALL in the trunk of my Ford Windstar Van. So temporarily Jacob has taken over "Hannah's stroller" I am constantly looking of things for Jacob to sit in at restaurants. He has been using the special tomato over my other options. I tried this stroller out at a local restaurant that day after I got it. I don't think the Special Tomato is coming out of the garage for awhile. :-)

Anyone who has a smaller child that will need a stroller long term I think you should check this stroller out as an option. I've had my other baby jogger for over 3 years with regular use and it is goig strong.


Sunday, March 31, 2013

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.

Thursday, January 17, 2013

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.


Friday, January 4, 2013

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.