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.

Wednesday, April 11, 2012

Physical Medicine appointment

Jacob seen the physical medicine doctor today in Orlando. We discussed plans on ways to manage his spasticity in his legs. We discussed Botox and Phenol injections for now and future options to include a possible baclophin pump or SDR surgery.

The Phenol and Botox is scheduled to be done on May 2nd. He has to go to outpatient OR to have it done and has to be put to sleep for the procedure. The MD has to use a nerve stimulator to inject the phenol and apparently it is very painful and he can not move so it has to be done under anesthesia. The phenol goes in the larger muscles mainly backs and between the legs .Then botox will be used in the smaller muscle groups. The phenol has an almost immediate result per the doctor and she said we can not stretch him for a few days.

Down the road..we will be looking at a more permanent solution to help with his legs. She showed me what a baclophin pump looks like. It is about the size of a hockey puck. It goes under the skin just above the hip and has a small tube that goes directly into the spinal column. She said the pump has to be refilled every 3-6 months. There is a port in the middle of the pump and a needle goes through the skin into this port to take the old medicine out and place the new medication. It has to be done as a sterile procedure since the medication goes into spinal fluid...kind of scares me the risk of infection with this one.

The 2nd option would be SDR (selective dorsal rhizotomy) there is good information about it here. I was not aware so many doctors did the surgery. I have a choice between a doctor in Orlando and 1 in Tampa. The MD said there are 2 groups of patient that get this surgery. Most are kids that have higher functioning CP and have a lot of strength without the high tone. Then the other group is kids that are so tight that are lower functioning that get it to help them with pain and positioning.  The higher functioning kids it is recommended that they get it between 3-7. Jacob is not high functioning, but if we did it, I would do it in the next year or 2. The surgery take most or all the tone out of the lower legs. So not only could he get off all the meds he takes for his high tone, but it may elemenate the need for him to have any muscle lengthening and hip surgeries in the future. She said that kids that use their tone to help them move..it could be negative for them, because it will make there legs weak and they might not be able to bare weight. Jacob stands a lot in his gait trainer, but I don't know how much is him vs. the tone. She said it can also affect bowel and bladder function.  Just like knowing my options.

He sees a new GI doctor tomorrow. I will update if we learn anything new. I did get Jacob a new kind of button the other day just to try out. There are some awesome medical supply exchange groups on facebook full of parents that give away extra supplies they do not need anymore usually free for the cost of shipping. So I had a wonderful lady send me a AMT Mini-One g-tube button FOR FREE. I was able to use the same exact size as the Mic-key button. It is more flexible and closer to the skin than the mic-key button. The extension tubing does not come out as easy either. It has a more secure hold. Best of all if you switch and have a bunch of extra Mic-key extension tubing they fit into the AMT button perfect! I like it does not catch on his equipment like the Mic-key button does especially in the gait trainer.

I got Jacob a new seat. It is called a Wenzelite Seat2Go. I found the small size used on Ebay and then I had to buy the head support and leg abductor new from a special needs website. Overall I saved about $200 on all 3 pieces from a new price. I was a little sad that he is just about to big for the size small seat. Anyone looking into getting one he is about 34 inches and 28lbs and his shoulders come to the very top of the seat. He would probably fit in the larger size better. I am overall happy with it. It will do the job for a short time. Maybe next year if i still like it I will order the next size up. I was looking for a solution when we are on the go without having to take the wheel chair. I am currently 35 weeks pregnant, so I can't lift the wheel chair in and out of the van. I also bought a Valco Tri mode Double stroller with a toddler seat so I can push both boys and the new baby in the same stroller. The stroller is AWESOME but large and it only fits in the trunk of the van, so I can not have the wheel chair and the stroller in the van at the same time, so this little seat will be awesome. It fits in the stroller for extra support, it straps to standard chairs to be used in restaurants and it can be sat on the floor as as floor sitter so I can use it at friends and families houses.

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