Feb 27, 2014
Overall, Johnathan has done very well since contracting spinal meningitis after his baclofen pump replacment surgery over a year ago. The whole 30 day inpatient and fragile state he was in there and then again being admitted after getting back home, took a major toll on Johnathan and I both. We decided to take the year we had to wait, in makign sure there are no after affects to the meningitis, we decided to stay close to home. Gladly, we only had a few sicknesses during this time...
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My overall healthy 12 yr old son started having sporadic high heart rates last Wednesday 140-205 by Friday afternoon. I took him to the ER and he was admitted. Luckily, when his evening dose of his baclofen pump kicked in, I saw his heart rate go from the 150's to the 130's.

Today I picked up a copy of the ER & Inpatient records as I am trying to get my son an airbed thru medicaid and felt that since they gave us one without arguement while in, it could help my case if I got this info to med...

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OMG...if Children's Mercy had even half of what St John’s Hospital and Ranken-Jordan Rehab facility had, I would not have to travel so far...these places are amazing and just again reassure me as to the fact that I have made the right choice.
Surgery will be October 18th. We will be 3-5 days in ICU, then a few more days in a regular hospital room. Then 6 week’s minimum at the rehab facility.
Surgery will just be from the back...AMAZING. They feel they can get us from a 97 degree to a 47 de...

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Monday is the 1st appointment to prepare all for Johnathan's biggest surgery yet. Dr Anderson from St John's Hospital in St Louis will be doing the surgery, along with his team of fellow docs. We have ortho, general surgery, pulminologist and GI docs all coming together for the surgery.
I have chosen St Louis and Dr Anderson because I do not agree with Childrens Mercy's idea that breaking docs down into limited specialties is beneficial to the patient, at least not when you have one doc for sp...
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A bit ago we learned that our rehab doctors clinic hours were being cut back considerably and that we would have to choose another doctor. Stinks, but no biggy since the nurse is really our life line. We have chosen Dr Rinaldi, who is a doctor we saw years ago and we were impressed by the fact that he addressed Johnathan before us, as it should be.

Well, yeasterday I got an e-mail stating that our nurse is also leaving the department. NOW, I am freaking out! The rehab nurse is the one that han...
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Johnathan had spine x-rays back in March and we then repeated those x-rays in June due to noticeable changes. His curve is now 63 degrees but his twist has worsened to 91 degrees. Pretty much from the stomch down the spine bones that should be right to left ar now front to back. Complete spine fusion is not only a must, but an immediate must. We can no longer sit in any chair long, our soft boston brace causes us pain and we have started vomiting on a regular basis and it ain't due to reflux....
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Sadly, Johnathan is needing more surgeries. He has had 9 surgeries in his 11 years and I think that is waaay too many. Surgery #8 brought about sedation issues we never had before, so in turn brings new stressers with every surgery.

Johnathan has had tendon releases in both his arms and legs before. Ideally each surgery would last up to 7 years. Sadly we got 6 and 4.

Johnathan needs his feet and ankles released ASAP, as his feet are staring to bow. The good news though, is that Dr Anderson be...
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This is the Leckey Contoured Advance, found at sammonspreston.com under seating. This is a high-lo, tilt-in-space, completely adjustable chair. Johnathan was 49 pounds when we got it, typical size of a 7 year old, and should be able to stay in it thru his teen years. This is everything a parent of a quad needs in a wheelchair..HINT HINT to any inventors.

Johnathan has an 80 degree curve of scoliosis and can't sit in any seating system without falling over, sliding down and then literally not b...
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Johnathan is currently having numerous issues medically.

Since his new baclofen pump was installed, Johnathan showed a overall 70 degree curve of scoliosis. Since he outgrew his wheelchair and something is going to have to be done about his spine, I ordered a positioning chair thru medicaid instead of another wheelchair; you only get 1 every 5 years, so don't want to blow that until we know what the spine outcome will be. Well, that was back in December 2008. Last month Johnathan had new spi...

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3 weeks of illnesses, all thought to not be related turned into a drastic change and then an ambulance ride to the hospital.
Johnathan started out with a head cold. 2 days after he started, I started...we seemed to mimic each other from there on out. Week 2 was chest congestion and fear of it stickin in the lungs. Week 3 was diahrea. Start of week 4 seemed promising...Tuesday am we had a baclofen pump refill and all looked well. About 1:30 that afternoon, Johnathans heart started racing and hi...
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It seems that the biggest obstacles we have faced with Johnathan are those that are beyond our control. Doctors, insurance companies, school districts, those are the ones that truly make life hard for Johnathan.

 

Johnathan started school two years ago. He is a registered 4th grader, but is placed in a preschool setting. I have worked hard at getting my son a voice, but have found that the schools not only don’t know how to use the devices, but also don’t seem to want to learn.  I think ...

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