Neurosurgery called and Carson's chiari decompression has been moved to Aug. 4Th. EEK!!! I think my stomach has just jumped up to my throat!!!

So many have already asked where they can send cards and such. I wouldn't normally post it here, but here it is....

American Family Children's Hospital
1675 Highland Ave.
Madison,WI 53792
Phone: (608) 890-5437 (general information)


Keegan's neurology update

Heard from the nurse. They dont think the headaches and leg pain are from the Chiari. They think it is a muscle quality issue. They are looking at Metabolic Myopathy

~Metabolic myopathies refer to a group of hereditary muscle disorders caused by specific enzymatic defects due to defective genes. Metabolic myopathies are heterogeneous conditions that have common abnormalities of muscle energy metabolism that result in skeletal muscle dysfunction. Most recognized metabolic myopathies are considered primary inborn errors of metabolism and are associated with known or postulated enzymatic defects that affect the ability of muscle fibers to maintain adequate energy and adenosine triphosphate (ATP) concentrations. Traditionally, these diseases are grouped into abnormalities of glycogen, lipid, purine, or mitochondrial biochemistry.

They are still waiting on a few more results, Plus she wants him to have a few more labs drawn by Annika (Our Ped.). IF the tests all come back negitive, then she wants to do an electrical stimulation test done on his leg muscles. They poke about 30 needles in his legs and send the electrical stim through to see how the muscle react ~~ WITH sedation!! So.....It's is not becoming an easy issue either!!! SHIT!!



Surgery has been scheduled for September 9th.

Same road, different child

Its been almost 1 .5 years since Riley's chiari decompression and she seems to be doing well! Which is FANTASTIC! Except now, we are going to be headed down that dreadful road again.

Today, Matt and I had a "family" meeting with Dr. I about the game plan for Carson. We didn't even bring Carson along for fear that I would be an emotional wreck. We talked a little bit about Carson and her symptoms and then the dreaded word "decompression" came up, again.

As we speak, Dr. I's nurse is trying to schedule a date for Carson chiari decompression surgery. It will either be mid August or Early September. After the experience we had with Riley, I am scared to death. I am not really a crier, but tend to laugh more - only because I can't seem to figure out why we keep going through these situations and I try to hold my emotions in. Today, I cried. I cried in front of people I don't know in the middle of a restaurant. This SUCKS!!!
I don't even know how to explain it to her. I am pretty sure that until we get her in her gown she may not even understand what is going to happen. HOLY CRAP!! This is going to be a tough one!!

I will let you know when surgery is scheduled for.


Pissed off (am I allowed to say that?)

What a fantastic Chiari and Syringomyelia conference!!

Dr. I did a great job organizing it!

Thank you!!

I must say, I came home after 3 long days of lectures with my brain FRIED! Not just because of all the intense info that we learned, but it was very emotional as well. First of, the population that was at the conference wasn't what I was expecting. I was expecting to see all sort of parents, but that wasn't the case. Actually, their wasn't much of that at all. Most of the population was probably in their 50's and older. Most of them suffering themselves. Some in wheelchairs, some using walkers, some with braces on their legs, Some whom you could tell had their vertebrae fused, and some even with service dogs. Let me tell you, it put a huge LUMP in my throat!! To think that could be MY children when they get older, or could it be??

We learned about everything from Definitions, concepts, and treatments, to Neuropsychological issues, to Occult spinal dysraphism, to complex chiari: to fuse or not to fuse, to Pain management, to Genetics, to Hydrocephalus and shunts, to Audio-vestibular dysfunctions. EEK!!!

It was a very emotional conference. Its hard not to think of your own children while they are talking about the same issues you children have. A lot of people tried to make this conference personal, but the NSG wouldn't allow it. If you started to ask a personal question about your own issues, they shut you down and asked that you talk to them privately and not in front of the the whole audience.

Chiari and Syringomyelia affect everyone differently - no two stories are the same. So when the NSG talked to you it had to be in "general terms".

On Saturday morning we got to meet the CEO of ASAP and he showed us his power point that I do believe pissed a few people off. Mike showed us a chart that showed which conditions (population affected) were receiving funding for research and out of the 15 - 20 conditions he put up, guess which one was at the bottom? You guessed it ~ Chiari & Syringomyelia!! We have a whopping population of close to 300,000 people who are affected by these conditions and we are receiving ZERO funding to help find a cure. See why it pissed people off????

Here are some of the symptoms of Syringomyelia:
Symptoms develop slowly over time, but can come on suddenly after a fall or minor trauma. Sensation may be affected first. Some common symptoms include:

•Loss of sensitivity to hot and cold
•Numbness and tingling
•Bowel and bladder function may be affected
•Muscle weakness
•Paralysis (in severe cases, quadriplegia)

Scoliosis may be the only symptom in children. Often people with scoliosis undergo spinal MR imaging because of an atypical left-sided thoracic curve.

Here are some of the Chiari 1 Malformation symptoms:

Headaches, often severe, are the classic symptom of Chiari malformation. They're typically precipitated with sudden coughing, sneezing or straining. People with Chiari malformation type I also can experience:

■Neck pain (running down the shoulders at times)
■Unsteady gait (problems with balance)
■Poor hand coordination (fine motor skills)
■Numbness and tingling of the hands and feet
■Difficulty swallowing (sometimes accompanied by gagging, choking and vomiting)
■Vision problems (blurred or double vision)
■Slurred speech
Less often, people with Chiari malformation may experience:

■Ringing or buzzing in the ears (tinnitus)
■Poor bladder control
■Chest pain, in a band-like pattern around the chest
■Curvature of the spine (scoliosis) related to spinal cord impairment
■Abnormal breathing — specifically, sleep apnea characterized by periods of breathing cessation during sleep

Don't you think that people with this condition deserve to be able to find a cure????

October 10th is "Collect for a cure"day nation wide. Please let me know if you would be interested in standing with us and collecting coins and handing out information. We need to find a cure. I don't want my 3 children or anyone elses ending up in a wheelchair, walker, or worse......



I am off to Madison tomorrow for a 3 day Chiari Convention.
3 days I will be with out a child!

I am hoping to learn a TON of info and figure 1 of 2 things will happen. I will be bored out of my mind, or my eyeballs will be floating in medical info!!

Anyhow I am just so excited to be going.
Please keep my mom in your prayers as she will have all 4 kiddos while I am gone!!!

Fun in the sun with friends

We had a great time with the Vanden Wyngaards this past weekend at the lake!! The kids had a blast, the parents had a great time and the weather was B*E*A*U*T*I*F*U*L!!
We could not have ask for a better time!! Thanks to my friend Jenni (and her assistant) and her shnazzy camera we have this beautiful picture video!



Hi All,

I know some of you have been having a hard time getting into my blog, me included! Well, I removed some of the applications and by george, I think I've fixed it!!!

Please leave a comment for me for me if It is working better on your end!!


No news just might be bad news

A few weeks ago, I posted about Carson's CMG results. Up until today, I had heard pretty much nothing (important) from Dr. I.
This afternoon, Dr. I's nurse called to tell me that that she and his other nurse finally got a minute to "tie him down" and ask him a few questions about Carson. She did tell me that he and the urologist got a change to speak about the CMG results, he reviewed Carson's MRI over and over again, they chatted some more, and pretty much told me that he can not find the connection to the neurogenic bladder issues.
2 days ago I had the chance to chit chat with Dr. K's (urologist) nurse and again, she told me that there are only 4 causes to the neurogenic bladder.
1. Chiari Malformation
2. Spina bifida
3. Tethered cord
4. Syrinx (cyst on the spinal cord)
We know, and from her latest MRI, Dr. I knows that she does not have 3 out of the 4, and her chiari is minimal.
So, where does that put us?? Who knows. We were told that Dr. I is not sure what to do, and that he wanted to see us as soon as possible for a "family" meeting. Where that will lead, I am not sure, but I can sure tell you that I am scared to death!
It would be nice, just for once, to have a NON COMPLICATED diagnosis!!


A day at the pool

As for Monday Measurements:

Goal: 40lbs

Today: +1

Not bad for 5 days in Indiana.

Starting fresh again today!!!!



It's been a while since I have blogged but I have an excuse! We took a bit of a trip to Indiana to see Matt's family. We don't see Matt's side very often, but when we do, we have a great time. This year we got to spend the 4Th with them.

Do you think they are all related???

Riley and Erica

On our way home from Indiana today we pit stopped at our favorite "cousins" house. What little time we had with them today was fun!
Thanks for lunch Moll!!!

*I will post my Monday measurements again tomorrow.