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.

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.

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