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.

Tuesday, April 17, 2012

Quick Update from GI appointment

I know I updated on the physical medicine doctor last post, but I have yet to hear a confirmed date to when we will have the phenol and botox injection....they said probably May 2nd in the office.

We seen the new GI doctor on the 12th. The appointment went well and they spent some time in the room with us. I explained everything he has been through in the past 2 years.

Jacob has seen this doctor before...but we switched to Tampa after the 1st appointment. I learned that that the last time we seen this doctor was February 16,2010...talk about picking yourself up off the floor and continuing to live after tragedy...this was 17 days after Jacob's identical twin brother died at 6 1/2 months old. This doctor is in the same practice that took care of his brother at the hospital he died at...I'm sure this was part of the reason we switched...2 years later and we are back.
I explained to him Jacob's GI history the best I could remember it.
* coming home from the NICU arching and screaming all the time...the reason for initial GI referral.
*May/June 2010 switched to different GI (still in denial about sons severe disability) he was still eating by mouth at this point, but was getting sick a lot.
*June 2010 had peg tube placed. was also placed on meds for reflux at this point...we thought the tube would be temporary until he outgrew being sick all the time before we realized he was aspirating.
*somewhere around this time we had a swallow study showing aspiration so his food was thickened and we had to start positioning his head to the side to eat.
*Jacob went from arching and screaming all the time to projectile vomiting no matter if he ate by mouth or by tube. We were against a nissen because I was dead set against my son not being able to eat by mouth and I thought it might affect his ability to eat...when he was not sick he was a really good eater. He ate better than his brother. He ate baby food 1st off a spoon and took it well, he ate more bottles than his brother etc and weighed more.
*November 2010: At this point I had struggled more and more with his feeding. He had developed an oral aversion and I would have to gag him to get him to suck and swallow. He was getting more tube feeds than by mouth feeds at this point. He had a swallow study that showed he was aspirating every time he gagged and I was advised to stop feeding him my mouth. I was crushed and lost hope of him every being able to do anything "normal". I kinda gave up for a little while. He had already started feeding therapy at this point he started when he had the 1st swallow study, but his therapist was out on medical leave and I had no where to turn.
*May 2011 GI doctor finally replaced peg tube with a Mic-key button.
*For the past year 1/2 we have been at a stand still. He can't eat liquids in a bottle by mouth. He gags, chocks, aspirates and vomits. His oral aversion has improved. He loves pacifiers, but can't tolerate liquids. He lost the ability to suck, swallow, and breath. He can take 7-8 bites of stage 2 baby food consistency food when he feels like it, but I think he still aspirates some so he don't eat that often. We have been on at least 4 different formulas and a blenderized diet. He still vomits A LOT! He initially gained weight once going to the blenderized diet, but has been sick and has lost weight since we started giving him commercial formula when he is sick for fear he will aspirate the blenderized diet. So, we have been between 25-29lbs for the past year. The old GI only offer to us was a G-J tube which I refuse to do. Since he will have to be on feeds almost 24-7. I feel like it is only a band aid to the problem and no quality of life for him or us. The G-J tube is 1 tube that goes into the stomach and another tube that goes into the intestine to bypass the stomach. You can not bolus feed into the intestine and he would be on a pump with a feeding bag all the time.

This is where the new GI comes in...our old GI refused to refer him for a nissen stating that it does not always work with spastic CP kids...which is true, but at this point I am desperate. So the GI wants to repeat some test we have done, but over a year ago. He wants an endoscopy, PH probe study, and a gastric emptying study. He has them scheduled for the 24th, but we are trying to coordinate the procedure he has with the physical medicine doctor so he only has to go under anesthesia one time. So, I am unsure of a date and time for sure.

Endoscopy means looking inside and typically refers to looking inside the body for medical reasons using an endoscope, an instrument used to examine the interior of a hollow organ or cavity of the body. Unlike most other medical imaging devices, endoscopes are inserted directly into the organ (they go through the mouth to look down the throat into the stomach.)

What is esophageal pH monitoring?

Esophageal pH (pH is a measure of the acidity or alkalinity of a solution) monitoring is a procedure for measuring the reflux (regurgitation or backwash) of acid from the stomach into the esophagus that occurs in gastroesophageal reflux disease (GERD).(this is a prob that looks like an NG tube that goes down the nose into the stomach to measure the acid content and the amount of reflux he has. It has to stay in his body for 24 hours and requires him to stay over night in the hospital.)

What is a gastric emptying study?

A gastric emptying study is a procedure that is done by nuclear medicine physicians using radioactive chemicals that measures the speed with which food empties from the stomach and enters the small intestine. Gastric emptying studies are used for testing patients who are having symptoms that may be due to slow and, less commonly, rapid emptying of the stomach. The symptoms of slow emptying are primarily nausea, vomiting, and abdominal fullness after eating. The symptoms of rapid emptying are diarrhea, weakness or light-headedness after eating after eating.


Nissen fundoplication is a surgical procedure to treat gastroesophageal reflux disease (GERD). In GERD it is usually performed when medical therapy has failed. In a Nissen fundoplication, also called a complete fundoplication, the fundus is wrapped all the way 360 degrees around the esophagus.


Pyloroplasty is a surgical procedure to widen the opening in the lower part of the stomach (pylorus) so that the stomach contents can empty into the small intestine (duodenum).

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.

Monday, April 2, 2012

Jacob's new gait trainer

Jacob in his Rifton Gait trainer walking to the Mickey Mouse Club House Hog Dog Dance. This is his new favorite things since Moose and Zee were taken off the air by Nick Jr. He will stop walking when the song stops, I have to go back to the beginning of the song and he will perk up and do it all over again. By the time I decided to take this video, he had already hot dog across the room about 10 times and was starting to get lazy lol.