History

Wednesday, January 9, 2013 8:38 AM CST

Happy 22nd Birthday Kara !! :)

Monday, January 9, 2012 4:11 PM CST

HAPPY 21st BIRTHDAY KARA !! :D

Thursday, December 22, 2011 10:42 AM CST

It's almost Christmas and Kara and Kyle are both done with their finals :) ! Kara's grades were excellent and she has been officially accepted into her program! She continues to impress us. Her symptoms have been acting up the past few months. She had two E.R. visits and would just get up the next day and go to classes and be diligent about her studies. Her daily headache pain and dysautonomia symptoms are still present. Still praying and hoping for pain free days!

Kyle finished up his 2nd rotation in grad school. His next rotation (lab) will be the study of the neurobiology of circadian rhythms and the neurogenetic basis of animal behavior. We're so glad to have him home for Christmas :)

Monday, December 5, 2011 8:29 AM CST

Kara was feeling better the past few weeks since her shunt was adjusted correctly. She has been able to avoid the college library scanner just in case that was the cause of what moved her shunt dial by itself. Dr. Frim gave her a letter to carry with her stating that metal detectors and magnets may cause changes in programmable shunt settings that could result in increased brain pressures and headaches and that she should avoid close proximity to the detectors.

Yesterday evening her headache pain worsened and we had to take her to the E.R. She was experiencing extreme pressure in her head and behind her eyes. They did shunt series x-rays and we were able to see the shunt setting and Dr. Frim said it looked like to was set where it should be. He said if she didn't feel better the next step would be for her to have a shunt tap to check her pressure and figure out why she has pain this time with the setting more or less where we want it.

Thursday, November 17, 2011 7:57 PM CST

Whew...we are tired. We just got back home from a whirlwind trip to Chicago. We left this morning at 5:00 am. Kara had an MRI and then Dr. Frim's nurse Lisa did the fluoroscopy. She was shocked to see that her shunt was actually set on 30 (the lowest setting), no wonder Kara was feeling so terrible. Lisa was able to adjust her back to 110 and it's great to know that for sure now, plus the dial is not broken since it moved fine :) They are still not sure why her dial moved by itself, but did tell us of a couple of other people who had their dials move...one from a particular store and one from a school (from the security scanners). Dr. Frim was able to read her MRI and all still looks well in that area and we're thanking the Lord :)! We are so relieved for Kara that the shunt is now set correctly and she can get back to feeling better soon. She is such a strong person and throughout all of this, she continued to attend her classes, tackle hours of homework and take tests! She is simply Amazing :)

Wednesday, November 16, 2011 5:55 PM CST

Kara's shunt should be set on 110, but the x-ray revealed that it's on 40, so it's draining very, very heavily and that's not good. She will have a guided x-ray (fluoroscope) to make sure the dial will be set correctly. We're not sure why her shunt dial moved by itself the past week, or why when David adjusted her, it went to 40 and not 110. We're hoping the dial is not broken. She has also been experiencing pulling and tingling on her spinal cord and Dr. Frim wants her to have an MRI to make sure that there is no tethering present. Will update again in the next few days.

Tuesday, November 15, 2011 10:05 AM CST

It's been a week since Kara's E.R. visit and she still woke up today, not feeling too well. Her ears feel full and her head is hurting upon standing, so she will get an x-ray to check her shunt dial today.

Tuesday, November 8, 2011 10:11 AM CST

***Update: Kara was seen in the E.R. and had a shunt series of x-rays. The shunt was intact and the dial was checked to see if it was still on 110. The doctor said it was on 120. I asked to see the x-ray and I took a picture with my phone and sent the picture to Dr. Frim's nurse. Kara was discharged, because they didn't think her shunt dial was too far off the 110. On the way home I spoke with Dr. Frim's nurse and she took a look at the picture I sent and said that Kara was definitely set on 90 (not 120) and that's why she was feeling sick. We're not sure why her shunt dial moved by itself from 110 down to 90. David adjusted her back to 110 and we're hoping and praying she will be feeling better soon.

We could use some prayers for Kara. She woke up feeling awful with a horrible headache, so we're taking her to the E.R. to make sure all is okay with her shunt.

Thursday, October 27, 2011 11:51 AM CDT

Kara is busy taking midterms. She has one in biology today. She has been doing so well in her program (Deaf Interpretive Services) :) Her headaches are still present, but she has been taking less medication. Still praying the pain will go away! Kyle is in his 2nd rotation in grad school. He has had two scientific research articles published.

Monday, October 10, 2011 5:14 PM CDT

Kara's shunt adjustment went well. I was so nervous I would not adjust it correctly, but I did and an x-ray confirmed that it is now on 110 (was on 130). The only problem is that Kara continues to have daily head pain. Hoping she will acclimate to the new setting and her pain will decrease.

Friday, September 30, 2011 12:46 AM CDT

Kara left college early today due to head pain. She has continued to experience high pressure symptoms, so we are going to adjust her shunt back down. Hopefully it will go well and the shunt dial will cooperate, since it is slightly twisted. She will have an x-ray to confirm the setting.

Tuesday, September 20, 2011 3:08 PM CDT

Kara had been doing well, but the past week her head pain has increased and so have the dysautonomia (POTS) symptoms. We're not sure if it is from the shunt adjustment weeks ago. Dr. Frim says it is possible, but it could also be from the season and weather changes. He said for Kara to rest and stay hydrated and give it some more time. Hopefully she will feel better soon.

Last Saturday we attended the CSF (Chiari & Syringomyelia Foundation) Dinner/Dance. Kara had one of her photographs entered in the silent auction. We had a great time and got to hear a speech by 17 year old Calvin Poznik on how the daily pain and many serious surgeries from Chiari have impacted his young life. It was a very emotional testimony. It is so important to fund research, so a cure can be found for Chiari Malformation, Syringomyelia and Related Disorders. Below is the website for CSF, or you can click on the link at the bottom of the page under "Links":

www.csfinfo.org

Saturday, September 3, 2011 8:40 AM CDT

Please keep the family of Ann Banfield in your prayers. She suffered from PTC (pseudotumor cerebri) and she passed away last Sunday. We have known Ann for many years, as she was a patient of Dr. Frim too. She was the most loving, generous and kind person. She always took the time to think of Kara and the younger Frim patients and would visit them when they were in the hospital. Our thoughts and prayers are with her family.

www.caringbridge.org/visit/annbanfield

Also, please continue to keep our dear friends, the Gameron Family, in your prayers as well. Their 19 year old son Joe passed away in July and his birthday is this week and we cannot fathom all they are going through.

www.caringbridge.org/nj/jessica

Friday, August 26, 2011 12:20 AM CDT

Kara got the best news from Dr. Frim! She had a 2 hour MRI and her MRI looks great compared to her MRI from last year and we were able to compare them side by side. It's a remarkable difference and we are thanking God for answered prayers! Looking at the previous MRI, Dr. Frim even said that in the past, "Chiari has not been good to you Kara", but now things are much better! Dr. Frim was able to repair the brain stem/spinal cord tethering and that area looks fine now and the CSF leak (pseudomeningocele) that Kara had for 9 months is completely gone and has been since last September! Her brain is sitting in the correct spot with no Chiari herniation.

The nurse adjusted Kara's shunt from 110 to 130 and if you remember her shunt began at the 50 setting in June 2010, due to the massive CSF leak. Dr. Frim is hoping that in the future Kara will be able to live without a shunt again, so he wants her adjusted every few months until it gets to the 200 setting. Of course we will see how she feels at each setting to see if she can begin to tolerate the higher pressure. She still experiences daily headache pain, but it has been somewhat more tolerable than it has in the past.

This is the first time in 10 years, since Kara was first diagnosed with Chiari, that we were able to walk out of the doctor's office with a smile on our faces....what a blessing :) !

Wednesday, August 17, 2011 5:39 PM CDT

Kara and I were able to attend Joey Gameron's funeral and it was heart wrenching! We were able to wrap our arms around Michelle, Al and Jessica and that meant the world to us! Our hearts are truly broken for them and not a day goes by that we do not think of them. Please continue to keep them in your prayers.

Kara finished up her summer class a few weeks ago and will be starting fall semester in less than two weeks. She has an appt. soon to see Dr. Frim and have an MRI (cine/flexion/extension) and her shunt adjusted.

Tuesday, July 19, 2011 9:08 PM CDT

Please keep our dear friends Al & Michelle Gameron and their daughter Jessica in your prayers. Joey, their 19 year old son (brother) passed away this past Friday. This family is so important to us as we met in 2002 when our Kara and their Jessica had brain surgeries one day apart and were in the hospital together. This family is so loving, generous, kind & thoughtful....we could go on and on. They have already been through so much with Jessica and it's so hard to comprehend that they would have to endure the loss of their sweet son.

www.caringbridge.org/nj/jessica

Friday, July 8, 2011 4:55 PM CDT

The past few months Kara has been experiencing abdominal pain and she says it is due to her shunt tubing. It is a burning/piercing pain and when it occurs, she has to stop what she is doing and put pressure on that area. If she is walking, then she has to stop because it hurts so much. Dr. Frim says the burning and piercing can be a reaction to the silastic (the shunt tubing material) and that it worsens with time, which is what has been happening. He said the best strategy is to remove the shunt again and slowly increase the pressure to work towards that.

Kara's shunt is set on 110, so it will take awhile to get her pressure increased to see if she can even tolerate it being higher.

Monday, June 20, 2011 10:21 AM CDT

Kara made it a whole year without surgery...yay! She is doing well, but still has the headache pain and was experiencing some dysautonomia symptoms recently.

Kyle is finally moved out of state and settled in his apartment and ready to begin grad school. Kara had fun staying the weekend with him.....our house sure was quiet!

Tuesday, May 31, 2011 9:25 AM CDT

Despite all Kara has been through she ended up with a 4.0 gpa for this semester, which she had for fall semester as well :) We're so very proud of her :)! She will begin a summer class in July. She had her wisdom teeth removed a few weeks ago and did well, except when she got home her tongue began to swell up. She was checked over (thank you Linda and Paul) and told she would be fine. Obviously she must have had an allergic response to one of the meds they gave her. The headache pain continues to be present, but Kara pushes through it and goes on with her day. She has been busy writing her own music/lyrics and playing her guitar. It's been very therapeutic for her :)

(David and I celebrated our 25th Wedding Anniversary yesterday! We all had a great time celebrating :)! Hard to believe how quickly time goes by...I can remember my parents celebrating their 25th Anniversary like it was yesterday :-).

Friday, May 13, 2011 9:08 AM CDT

Kara just took her last final of this semester and she is happy :) She has continued to do well, except for the daily headache pain. She will be getting her wisdom teeth removed this Wednesday and I have to admit that I'm nervous. I guess I'm nervous for her to have any procedure done after all she has been through. The oral surgeon is putting Kara on an antibiotic due to her shunt and Dr. Frim said to make sure they do not extend her neck too far.

Kyle is finishing up his job at Baldwin-Wallace College and will be moving out of state in the next month to pursue his PhD. He had his peer reviewed Scientific Research published in the B-W Journal of Research and Creative Studies. http://www.bw.edu/resources/dean/fscs/jrcs/

Wednesday, April 20, 2011 8:58 PM CDT

Kara is still experiencing headache pain, but she remains busy with school, especially with finals just around the corner.

Tuesday, April 12, 2011 10:13 AM CDT

Kara has been experiencing some nerve pain due to her shunt tubing. Her headaches have been a bit worse than normal, but she is still attending school etc. Sarah Hall is home from her surgery and is doing Awesome :)!!

Friday, April 1, 2011 10:12 AM CDT

Kara is still doing well and I wanted to update on 14 yr. old Sarah Hall. I just spoke with her father and she came through the lung surgery well. The doctor's were able to remove the tumor again. She is in the PICU, but is expected to go to a regular room today. He said she is in a bit of pain, but overall still doing well. This young lady is so Brave and so Amazing :)! Please continue to pray for her full recovery and for this tumor to never return.

Friday, March 25, 2011 12:22 AM CDT

Kara is still doing well, although she did fracture her finger last week, but only found that out today. The family doctor originally thought she sprained it. She doesn't need a cast though and only needs to buddy tape it, so that's good :) It's not been too much of a problem for her since she has to sign in her ASL class. She still has daily headache pain and this past week woke up with a more intense morning headache, but not sure why that has been happening. David and I will be tagging along with Kyle to find him a place to live in Michigan. He finally chose the U of M for Grad school and will be in the PIBS (Program in Biomedical Science) Program (PhD. in Neuroscience). It's a great Interdisciplinary Program and we're so happy for him :)

In my previous post I mentioned 14 year old Sarah Hall and how she needs to have a 2nd surgery to remove a lung tumor that they thought was taken care of with last year's surgery. Her surgery is scheduled for March 31st, so please keep her and her mom and dad (Rick & Susan) in your prayers.

Wednesday, March 16, 2011 7:22 PM CDT

Good news.... Kara is finally feeling better now and seems to have finally acclimated to her shunt setting of 10/11 :)

Last year, during one of Kara's hospital stays in Chicago, we met Rick & Susan Hall and their beautiful 12 year old daughter Sarah. At that time Sarah had surgery to remove a lung tumor and has done extremely well since then. Sarah is now 14 years old and recently had a check up and they found that the tumor has begun to grow back and Sarah will soon need another surgery. Please keep Sarah and her family in your prayers! Pray that this upcoming surgery will remove this tumor for good!

Sunday, March 6, 2011 10:05 AM CST

Dr. Frim's nurse ended up faxing over a slip for Kara to have one more x-ray. David had reset Kara's shunt the night before, so we were hoping it set correctly and it did :)!! Thank God! It is now set on "10 or 11" and we do not have to make a trip to Chicago. Dr. Frim said, "Dad is now in charge of programming Kara, he got it right" :).

Friday, March 4, 2011 7:38 AM CST

Unfortunately Kara's shunt did not cooperate and it reset incorrectly. She was on "17" and Dr. Frim said it looks like she is now on "3" or "4" and those are the lowest numbers a shunt can be set on. We are very concerned about this because two weeks ago Kara was accidentally set on "20" and it reset to "6" and she became very ill with extreme low pressure symptoms. Dr. Frim emailed us and said that Kara will need a fluoroscopy reset to make sure the valve still works and to get her back on the right track. In the meantime David tried resetting her shunt late last night. He thought what did Kara have to lose since she was on the lowest setting and it couldn't go any lower. He was trying to help Kara not to get so sick. So, we are not sure where she is set now and hopefully it is higher than the "3" or "4". I'm hoping Dr. Frim's nusre will fax a slip over to our local doctor and Kara can get another x-ray today. We're waiting to hear from the nurse and hoping we will not have to make a trip to Chicago.

Thursday, March 3, 2011 12:35 AM CST

I am going to reset Kara's shunt today. Pray her shunt dial will cooperate and that it will set correctly. It has set incorrectly the past month and Kara has been experiencing high to low to high pressure symptoms. It's currently set too high and shouldn't be, so that is why Dr. Frim wants it set lower.

Saturday, February 26, 2011 9:38 AM CST

We heard from Chicago yesterday and Kara's shunt is on "15" or "17", even though we set it to "10". Kara has been experiencing some high pressure symptoms, but is not as sick as she was a few weeks ago when she had low pressure symptoms. Dr. Frim wants her re-set to "10" again, but we're kind of nervous to re-set it again, since it keeps setting incorrectly. Dr. Frim's nurse confirmed that Kara's shunt dial is at an angle under her skin and that maybe we could make a trip to Chicago to have it set with fluoroscopy, even the word "surgery" was brought up, but we will avoid that at all cost. Kara wants to wait and see if she will eventually adjust to this higher setting and that way nothing more will need to be done. In time, Dr. Frim's goal is for Kara's shunt to be removed again.

Wednesday, February 16, 2011 7:54 AM CST

Monday night we re-set Kara's shunt to "10", like Dr. Frim wanted us to, in hopes that she would feel better. We sent a picture of her x-ray to Dr. Frim yesterday and he emailed back that her shunt was definitely not on "10"! He said he was not sure if it was actually on "15" or "5", as the x-ray was sort of blurry and at a bad angle, plus we took a picture of it as well. He also said that the valve/dial is at an angle under her skin so it might be difficult to feel and to reprogram. Now we can understand why we have been having a hard time re-setting it. I wish we new exactly what number it is set on, so we sent out the actual x-rays to Dr. Frim yesterday. He told us to wait a day and see how she feels and if she still feels sick then we can try re-setting it again. Thanks for the prayers because she is feeling better than she did on Monday, but is still experiencing some low pressure symptoms. We will see how she does today.

Monday, February 14, 2011 1:49 PM CST

On Friday we adjusted Kara's shunt again in hopes to re-set it where it was supposed to be, which was "6" and not "20" where it had accidentally set. She had an x-ray and Dr. Frim confirmed it was now set correctly at "6" again. We were so relieved, as she was beginning to experience high pressure symptoms. Her ears were feeling full and plugged and her headache pain changed. However, she is feeling terrible low pressure symptoms today and is really sick. She could not stay in class today and had to lay down in the hallway. Dr. Frim thinks we should move her shunt to "10" in hopes of making her feel better. Please pray her brain will adjust to this setting and that she will begin to feel better soon.

Friday, February 11, 2011 4:56 PM CST

Kara's shunt was adjusted 2 weeks ago and we just got the x-ray results from Dr. Frim. She was set on a low setting of 5 and Dr. Frim said her shunt is now set on the highest setting of 20. That's not good, so we are going to adjust her shunt again and then head to the hospital to get another set of x-rays and take a picture of the setting and email it to Dr. Frim. Pray that her shunt will adjust correctly this time.

Friday, January 28, 2011 2:01 PM CST

Kara started the spring semester and things are going well. She went to the local doctor this week and I adjusted her shunt for the first time since it was placed this past June. The x-rays proved to be a problem and the technician could not get a good picture of her shunt dial. We had to make a call to the neurosurgeon's nurse and Kara had another set of x-rays done and I sent them off to Chicago via mail. We will wait for the results to make sure her shunt was adjusted correctly.

Sunday, January 9, 2011 8:33 AM CST

HAPPY 20th BIRTHDAY KARA !! :-)

Kara is still doing well! She has had some nerve pain from her shunt tubing and some low pressure symptoms here and there along with some daily headache pain, but overall things are better! We will begin to adjust her shunt little by little, so that her csf will not be draining as much. After all Kara has been through in the past year, we're very proud that she was able to return to college and finish up the fall semester with a 4.0 GPA :)

Thursday, November 25, 2010 10:16 AM CST

Happy Thanksgiving! Kara sure is feeling better than last year at this time :) She has recovered well from her LP shunt surgery in June. She did have to go to the E.R. in early August due to pain issues, but hasn't had to go since then. As far as her internal CSF leak (pseudomeningocele), the back of her head was still bulging all summer (just not as large as before her shunt was placed). When September rolled around the back of her head began to bulge larger and with more force. We were concerned that her shunt was not working anymore and could not begin to think of her having another surgery. Talk about frustration! Not sure what to do anymore, we laid hands on the back of Kara's head and asked God to heal her (which we have done in the past), but this time ...He healed her and by the next day the back of her head went back to normal and has stayed that way ever since!! Praise God :D !!

We took Kara to Chicago for her post-op check up in October. She had an MRI and after 10 months of an internal CSF leak, Dr. Frim confirmed it was gone :D !! The area where she had surgery last year for the tethering still looks good too! The only negative was her CSF flow posteriorly is minimal, but he didn't think it looked too different from her last MRI. Her shunt is still set on one of the lowest settings, meaning her CSF is draining very heavily. Dr. Frim wants us to wait until January and then we can move the setting up a number. We can program it here with our local doctor and then have an x-ray to see if the setting is correct. Glad we will be able do this at home!

She has been dealing with quite a bit of nerve pain in her abdominal area due to her shunt tubing poking around. She still has daily headache pain as well, but we're glad the other conditions are better now! Kara was able to return to college this fall :) She transferred to a different college and changed her major to "Deaf Interpretive Services" and when she graduates she will be a Sign Language Interpreter (just like her Aunt Jenni) :) She is doing excellent in this program and we're so proud of her!

The rest of us are doing well. David started a new job in June and got to travel to Japan and I've now been able to return to work a bit. Kyle is the Neuroscience Lab Director at his college and has recently applied to Grad Schools to pursue a PhD in Neuroscience/Neuropharmacology. We also got a new puppy and she is cute as a button :)

Friday, July 2, 2010 11:26 AM CDT

Kara continues to do well :) The steri-strips have fallen off two of the three incisions from the LP Shunt surgery and those incisions look good. After 7 months of an internal leak (pseudomeningocele) the bulging has decreased remarkably :) Sometimes it indents all the way back in and sometimes it bulges just a bit.

Kara's pain management doctor found a medication that is helping her headache pain. It doesn't take all the pain away, but it is lowering her pain down a number and that is great news :) !

Sunday, June 27, 2010 11:07 AM CDT

Kara's incisions are healing well and she is starting to get out and about. The only problems she has been experiencing are some abdominal and rib pain. Dr. Frim thinks it is the shunt tubing poking around inside of her. He also thinks she is experiencing nerve pain due to the shunt being placed in the spinal column. The pseudomeningocele has decreased and sometimes it goes flat and sometimes it bulges a bit. It will take time for it to completely go away.

Tuesday, June 22, 2010 3:08 PM CDT

Kara has 3 incisions from her shunt. Two of them are slightly sore, but the abdominal one is a bit more sore from the shunt tubing. She is very tired, but other than that she is doing well. We are just happy to finally be home :)

Monday, June 21, 2010 11:52 AM CDT

We are still in Chicago at the RMH. Kara saw Dr. Frim's nurse today, due to an irritation from the tape they used after surgery, but other than that she continues to do well. Thanks again for all the prayers and support!

Saturday, June 19, 2010 11:46 AM CDT

Kara is out of the hospital and at the Ronald McDonald House :D !!

Friday, June 18, 2010 7:14 PM CDT

Kara has been doing very well :) This morning she finally got up and took a small walk down the hall. At first she experienced a low pressure headache from being upright and having her shunt set on "5", but as the day progressed she felt better and continued to do so. The back of her head is flat when upright and at times there is a little bit of fluid, but overall we are happy with the progress she is making :)

Thursday, June 17, 2010 2:17 PM CDT

Kara has been doing pretty well overall. Throughout the night she complained of nerve pain in her back and on her side. Per Dr. Frim this mid morning she was able to put a pillow under her head instead of laying completely flat. She did that for 20 min. then went back to laying flat. When we removed the pillow her nerve pain flared back up again, so meds were given. After awhile we raised her bed to 10 degrees and she began to tolerate that, but then got a bad low pressure headache and returned to laying flat. The good news right now is after raising her bed to 10 degrees earlier...her giant bulge on the back of her head went flat :D! It was still a bit squishy, but after 6-7 months of an internal csf leak we could actually feel her skull again :D After she laid back down it became a tiny bit larger than flat, but that is to be expected. Right now she is still experiencing a low pressure headache, but is trying to tolerate raising her bed to 10 degrees again. Thank you for your prayers and support.

Wednesday, June 16, 2010 7:43 AM CDT

Yesterday was a rough day for Kara! She was experiencing a lot of pain. Mostly back pain and incision pain. Her IV is in her foot, so that's uncomfortable as well. She has to continue to lay flat...no lifting of her head at all. It's very hard to watch her go through this again, but she is one tough cookie! She did end up resting better through the night and is still sleeping this morning, so that is good. Hoping today will be a better day for her. Thank you for the prayers and support :)

Tuesday, June 15, 2010 6:57 AM CDT

Kara made it through the first night, but was up a lot due to quite a bit of incision and muscle pain. She has only been laying on her right side, since all of her incisions are on the left. It's hard for her to move at all, or it increases her pain. Dr. Frim's nurse said the pain is to be expected and should get better each day. Please keep her in your prayers. Thank you.

Monday, June 14, 2010 5:49 PM CDT

Kara's LP shunt surgery is over and she is still in the recovery room. Dr. Frim said everything went well. The only comment he made was that he noticed when feeding the shunt tubing through, that she is very thin. She has had some bad head pain and some nausea. That may be due to having a lower pressure now (her shunt is set on 5). She is to lay completely flat for 3-4 days, no lifting her head up. I will try to update tomorrow. Thanks so much for all the prayers and support.

Saturday, June 12, 2010 7:02 AM CDT

Kara will be having her 15th neurosurgery in 2 days. Her surgery is scheduled for Monday morning. She has no other choice at this point. She has an approx. 2 millimeter hole in the lining of her brain and it's been there since Dec. 2009. She has given it a lot of time to see if it would heal on it's own and it has not. The back of her head is still bulging and the skin is thin in that area now. She has not been able to sleep, or lay down on her back for 6 months. When she leans over her head throbs. All I can say is that this is very hard on her and our family. We were all really hoping she could avoid another surgery!! We're asking that you please keep her in your prayers. She had this same type of shunt placed in 2006 and it caused her quite a bit of pain and an internal leak. Pray that there is no infection, leaking and minimal pain from this shunt surgery.

We want to thank Brett Cavanaugh for driving to Ohio from Michigan to see Kara this weekend. Brett was also diagnosed with Chiari Malformation and he and Kara met in Chicago in 2004 before their surgeries with Dr. Frim. We Love the Cavanaugh family and they have went out of there way the past 6 years in supporting Kara and our family and we have appreciated it so much. Having Brett here is keeping Kara's mind off her surgery for Monday, so that's a blessing :-).

Also, a big thank you to sweet Kathy D. for making & dropping off Kara's favorite homemade hot chocolate (since I only use the swiss-miss packets lol) and also for the donuts and snacks for the trip! That was so thoughtful Kathy :D !

We will make sure to update on Monday. We may also update on facebook as well. Thank you for your prayers and support.

Friday, June 4, 2010 12:24 AM CDT

It's hard to believe, but Kara will be facing another neurosurgery soon (LP Shunt). I think we are all feeling very overwhelemed by this, but especially Kara. We've prayed so hard that she wouldn't need this surgery, but it looks like she will and we will continue to trust God in this situation. Please keep her in your prayers for all to go well and please pray against any infection, leaks and for minimal pain, etc. Thank you.

Sunday, May 9, 2010 9:23 PM CDT

We cannot believe another month has gone by. Today we got to see our son Kyle graduate from college. It was a wonderful Mother's Day Gift :)! Kara was so very excited for her brother!

We received a call from Dr. Frim last week. After looking at Kara's MRI he said there is still a hole in the lining of her brain. The back of her head is still bulging 5 months post-op. She obviously has high intracranial pressure and Dr. Frim said she will need a shunt. She had a May surgery date, but she just could not bring herself to have another surgery quite yet. She had a pain management appt. this week and the doctor examined her and said that the skin where her head is bulging is thin. We let Dr. Frim know that and he said it is still fine for her to wait a bit longer for surgery. Kara does have a surgery date, but it's just so hard to face again!

Saturday, April 10, 2010 2:09 PM CDT

We just laid my sweet, precious grandmother (Kara's great-grandmother) to rest yesterday. While at my mother's house I received a call from Dr. Frim's nurse late yesterday evening. I was able to talk to his nurse and so was Kara. Dr. Frim read Kara's MRI and said that he can see where the dura (lining of the brain) is leaking spinal fluid. He said that the leak (pseudomeningocele) is large and that it is not going to heal on its own. He mentioned going back in and patching the dura and inserting a lumbar drain for 3 weeks, or putting in a shunt (possibly LP, or Foramen Magnum).

History is repeating itself and we are in the same scenario that we were in 8 years ago, when Kara was 11 years old. With that prior experience we are considering shunt placement again. Kara previously had a VP shunt and then an LP shunt, so if anyone has any advice about a FM shunt, please email me at ketch16@yahoo.com.

It really pains our hearts that Kara will have to go through another surgery, but we are praying about the situation and asking for God's guidance. Please keep Kara and all that suffer from Chiari Malformation and related disorders in your prayers. Thank you.

Saturday, April 3, 2010 10:13 AM CDT

It has now been 4 months post-op for Kara and the bulging in the back of her head is still large. Dr. Frim ordered an MRI to check the pseudomeningocele (csf leak), as there is still a hole in the lining of her brain and he wants to compare it to the MRI she had in Feb. Kara was able to have the MRI done at the Cleveland Clinic this past Monday. It was hard for her to lay down on the back of her head for the MRI due to the bulging and it caused the fluid to disperse, but then when she got up, the bulging got even larger. This leak is causing different pressures in her brain and if she leans down a bit to pick something up, it causes a pulsing pain along with her daily headache. We will not get the MRI results for a few weeks, because Dr. Frim is on vacation until April 12th. He still wants Kara to consider getting a shunt again, but she has been trying to give it more time.

Saturday, March 20, 2010 3:45 PM CDT

It's been over 3 months since Kara's last surgery to repair the lining of her brain and the back of her head is still bulging. Dr. Frim wants her to have another MRI and wants her to think about possible shunt surgery.

Thursday, February 18, 2010 11:26 PM CST

We just got back from Chicago. Kara had an MRI and then had an appt. with Dr. Frim. He wants Kara to try taking a diuretic for 3-5 weeks and see if that will help with the leak. There is a hole in the dura and the leak is large and the muscles that he pulled together...came apart internally. If that does not help, Dr. Frim talked about another surgery to go in and sew the dura shut again and pull the muscles together again, but this time put in a lumbar drain for 3 weeks after, so that would mean a 3-4 week hospital stay. A shunt was also discussed, but Dr. Frim was not in favor of it. We are just happy to be home and that we have time to give the diuretic a chance. (We were able to see Kara's MRI from today and the detethering surgery is still a success and that part of her brain looks great) :) !

Sunday, February 14, 2010 7:27 PM CST

Please keep Kara in your prayers. Even though she is physically stronger and is now able to get out and about, she noticed yesterday that her csf leak (pseudomeningocele) is larger.

Thursday, February 4, 2010 11:21 AM CST

We heard back from Shannon (Dr. Frim's nurse) today. Dr. Frim said it will take a long, long time for Kara's symptoms to get better, because the CSF leak will take a long, long time to go away. She's still experiencing the pulsing headache upon standing (along with her normal head pain). She has also been dealing with the dysautonomia (POTS) symptoms as well. Today she saw our local family doctor and he caught her blood pressure dropping (systolic from 98 down to 88), just going from sitting to standing. I'll have to call her dysautonomia doctor in Toledo tomorrow to update him. We will also be heading to Chicago this month for an MRI and to see Dr. Frim

Saturday, January 30, 2010 10:16 AM CST

As a mother, I'm feeling frustrated and sad, over the fact that overall, Kara is still not feeling better! Her pain continues to be present and then there is the pulsing pain as well. Also, the csf leak is still bulging the back of her head. She has felt tired and doesn't have much of an appetite, plus the dysautnomia is back! Everyday that goes by, I keep up the Hope that she will feel better. Chiari = Something I wish we never knew!!

Tuesday, January 26, 2010 10:59 AM CST

Kara is still having trouble with the pulsing type headache with any position changes she makes (sitting to standing, laying to sitting etc.). This is on top of her regular headache pain. She still has the csf leak as well. So, things are pretty much the same in the health category. She is happy to be driving now and getting out and about :)!

Tuesday, January 19, 2010 2:58 PM CST

Kara is struggling with the ever present headache pain! Plus she gets the pulsing head pain whenever she goes from sitting, or laying to standing. It's almost 6 weeks past her last surgery and she still has the internal csf leak (pseudomeningocele). Dr. Frim's nurse said to just keep an eye on it for now. Sometimes it takes a long time for the leak to go away. Kara has an appt. to see Dr. Frim sometime next month. She is happy because she can now drive again :)

Thursday, January 14, 2010 5:17 PM CST

Kara is doing about the same. She's doing good, but is still tired. She still has the bulging in the back of her head and that is causing an extra pulsing type of headache. She can't wait to finally be able to drive next week :)!

Saturday, January 9, 2010 8:31 AM CST

Today is Kara's "19th" Birthday :) !!

Happy Birthday Kara! We Love You :) !!

Kara is still having some trouble with nausea and threw up the past two days, but just once per day. The CSF internal leak is still very large and it's bulging the back of her head. She is feeling uncomfortable with it and can't lay down all the way and it's causing pulsing headaches. We're still asking for prayers that it will go away. Today we plan on celebrating her birthday :) We'll be going out to dinner and having ice cream cake etc. :)! Thanks for all your prayers & support & sweet messages! We appreciate it so much :)

Wednesday, January 6, 2010 10:51 PM CST

We heard back from Dr. Frim and he said that if the inside hole closes in the dura (lining of the brain), then the fluid under the skin will go away. The hope is that the leak will go away within a month. He wants Kara to take Diamox to see if that will help as well.

Monday, January 4, 2010 10:28 PM CST

Kara continues to do better. She has been very tired and is resting a lot, but is beginning to go out and about. She is still not allowed to drive though. She still has a pulsing type headache and it gets worse upon standing, so she gets up slowly and that helps. The CSF internal leak is still large and Dr. Frim's nurse asked me to send her some pictures, so I did and I'm waiting to hear back from her.

Friday, January 1, 2010 4:36 PM CST

Happy New Year :) Kara seems to be doing a bit better than when she first arrived home last week. It seemed like the vomiting stopped for a few days, but then she threw up a few times yeterday morning. Wish that would stop for good! The low grade fever mostly shows up in the morning and she has been extremely tired. The CSF internal leak is still large. It is very poofy at the top of her incision. Dr. Frim was concerned she may have high pressure, although her last tap was normal, he thought it was due to her leaking spinal fluid externally and therefore it showed a normal pressure at that time. He said he hopes she will slowly start to feel better and we think that she is.

I have been in survival mode and then the enormity of the situation always hits me later. I was thinking back to when Kara was leaking spinal fluid out of her incision, all over her shirt and pillow case. The infectious disease doctor in Cleveland came and told me Kara had bacterial meningitis and how serious of a situation. The white count in spinal fluid should be 0-10 and Kara's was 1,000. I followed him out in the hall, so not to upset Kara any further and he touched my arm and said that he would be honest with me if, or when she would take a "turn for the worst". I was by myself and I felt terror at that moment and tearfully walked down the hall to call David & my mother. That's the exact moment when someone I knew walked by (Beth). It was Kara's nurse from the pediatrician she had years ago when she was little. She hugged me & comforted me and came to Kara's room with me. She then followed me, as they wheeled Kara down to have a lumbar drain inserted and she prayed with me and stayed with me (Thank you Beth)! God's timing is great and He made sure I was not alone at such a trying time and I'm thankful to Him that even when I'm in survival mode, He is the one helping me survive :) !!

Saturday, December 26, 2009 2:23 PM CST

It has felt so good to be home and we had a great Christmas spent with our families :)! Kara has had ups and downs. She has been nauseous and at times throwing up. She was even throwing up on Chirstmas Eve, then yesterday she was okay. Today she has felt nauseous and didn't get out of bed until now. She has also had a low grade fever off and on as well. The internal CSF leak (subgaleal effusion) has gotten larger and we're still hoping it will get smaller and go away! We will feel better when her incision is completely healed. It's getting there, but there is still a lot of scabbing. She also gets a pulsing type of headache along with her regular headache. She has been very tired, but in good spirits.

Monday, December 21, 2009 8:45 PM CST

Kara saw Judy & Paula this morning. Judy was concerned that Kara had a fever and was throwing up for days and Dr. Frim thought maybe she should have another spinal tap done to make sure there was not an infection in her CSF. We told her that the throwing up and fever stopped on Saturday night and that she felt better Sunday and this morning. She said there could be other reasons for the fever etc. She also checked the back of her head and there is still an internal csf leak (subgaleal effusion), but she said it will eventually go away, but we will feel better when Kara's incision is completely healed. She is not to drive for 6 weeks and is to keep sleeping sitting up for now. She said she could try laying a bit lower a little at a time. We are to return if she would began throwing up again, or have a fever. She has an appt. for an MRI and to see Dr. Frim in February. So for now, we are so very, very happy to be HOME :) !!! Again, we are so thankful to all of you for your faithful prayers and support! We have deeply appreciated it! Thank you!

Sunday, December 20, 2009 11:26 AM CST

(We are really missing home now)! Kara rested for the day yesterday here at the RMH. She was hanging in there, but then started throwing up late evening (we cannot figure out why she keeps throwing up). After that she did okay. She's still not eating very much.

She still has the internal CSF leak (Subgaleal Effusion) and you can see the bulging at the top of her incision. Really wish that was not there, but hoping it will go away soon! She will see one of Dr. Frim's nurses tomorrrow. We're still asking for prayers that the internal leak will stop and go away and that she won't get sick to her stomach anymore. Thank you :)

Saturday, December 19, 2009 12:02 AM CST

We are still here in Chicago at the RMH. Kara continues to have bouts of vomiting. She has had a fever off and on as well and can't seem to eat very much..only fruit sometimes. She is very tired and has been in bed since 8:00 pm last night. Again, hoping today will be a better day whenever she can get up. Still happy that we have David and Kyle here (Nate went home last night).

We're happy to report that Sarah and her parents Rick & Susan Hall went home yesterday :)! We miss them, but are glad they are home-sweet-home :)!

Thursday, December 17, 2009 5:40 PM CST

I was hoping Kara would feel better, but she was just throwing up again. Maybe it's her medications..not sure.

Dr. Frim checked her over today and thought her incision looked good, but there is still a pocket of fluid at the top and he called it a Subgaleal Effusion. He said it will eventually go away. Because he overlapped muscles this time when he stitched her up, the fluid doesn't have a space to leak down into, so that's good! Until the subgaleal effusion goes away, she has to continue to sleep upright at least at a 45 degree angle. Her stitches will disolve in 90 to 120 days, or maybe longer. Dr. Frim wants Kara to be seen on Monday morning. We are very happy to have David, Kyle and Nate here with us at the RMH :) !!

Sarah continues to do well and is going home tomorrow! We are so happy for her and for her parents Susan and Rick!

Tayla is out of the hospital and at the RMH :)!

Thursday, December 17, 2009 8:35 AM CST

Hoping my girl perks up today. After she got to the RMH and sat in the dining room and walked around a bit...she has been in bed ever since. She didn't even eat dinner. Of course her head pain is still bad, but I have to remember that it's only been one week since her last brain surgery and only 5, or so weeks since the one before. She has an appt. to see Dr. Frim today. We're also looking forward to David, Kyle & Nate arriving here today :) :) !

Wednesday, December 16, 2009 1:23 PM CST

Kara is back out of the hospital and over at the Ronald McDonald House :) ! Thanks again to Rick & Susan Hall (Sarah's parents) for giving us a ride..they are fantastic and angels here on earth :)! In fact, Sarah and Kara were both released from the hospital at the same time! Sarah is doing excellent! Tayla had surgery yesterday and is recovering well! Kara is feeling better today and is resting! She has an appt. to see Dr. Frim tomorrow at 1:00 pm in clinic. We are looking forward to David, Kyle and Nate coming to the RMH tomorrow :) ! Thanks for all the continued prayers and support! It's so appreciated!

Tuesday, December 15, 2009 8:13 PM CST

I've been here in the E.R. with Kara since 12:00 noon. It's been a long 8-1/2 hours. They are admitting her, but still do not have a room yet. She will be observed for at least a day.

Tuesday, December 15, 2009 8:31 AM CST

***Update: 3:00 pm - I decided to take Kara from the RMH to the E.R. (Thanks to J.D. for giving us a ride!) We've been here for over 3 hours now. She is still light/noise sensitive. Her head throbs when she gets up. Amanda thinks it is probably high pressure due to sitting up for a month and then laying down all night last night. They are giving her meds for pain and just watching to see how she does. No results back from the lab work yet. Also, not sure if they are keeping her here, or not. Will update later. ***

Kara woke up here at the Ronald McDonald House with a horrible, horrible headache and then started throwing up! We were both trying not to panic! I paged neuro and Amanda called me back and said maybe it was due to her laying down flat all night, because in the hospital she was more upright and maybe it was due to some of her meds. The different positions of laying down, or sitting up can cause pressure changes in the brain. I am to watch her right now and call them back if anything changes. She fell asleep upright for now. We do NOT want to end up back at the hospital!! Please pray all will be okay with Kara!

I also wanted to thank Rick Hall (Susan Hall) (Sarah's parents) for helping Kara and I get from the hospital on the shuttle to the Ronald McDonald House! We had too many items to carry etc. and could not have done it without Rick's help!!!! Rick also took me to get Kara's prescriptions last night! What a Blessing the Hall's have been to us! Thank you guys!! Their daughter Sarah has a CT scan this morning, so pray for excellent results. She should be able to come over to the RMH after that!

Tayla's shunt surgery is scheduled for this afternoon. Pray all goes well for her.

Monday, December 14, 2009 4:02 PM CST

***Update: 5:00 pm - We Are Outta Here!!! Kara is being discharged in the next hour, or so! We will be going over to the Ronald McDonald House! :) Also, Sarah is doing well since her lung surgery! She should be getting out of the hospital tomorrow :)!! Tayla will be having surgery in the next few days, so keep her in prayer.***

Due to the spike in Kara's heart rate yesterday, she had an EKG and blood tests to check her thyroid. All the tests came back fine! They are not sure what caused it, maybe medications. She has been very tired, but is doing well and eating better. She still has the ever present headache pain though. We are hoping to get out of the hospital soon and over to the Ronald McDonald House!! Dr. Frim had said last week that we would then stay at the RMH for another 10 days.

Sunday, December 13, 2009 1:18 PM CST

Kara is still doing better. She's been sitting up. They mentioned this morning that they want her to get up and walk around. She was just sitting up in her bed talking and she mentioned that her heart was going really fast. She was right. It was going 150 bpm. The neuro resident was paged, but he hasn't stopped by yet. I just kept massaging her feet and she fell asleep. The nurse gave her the normal meds and her heart rate went back down around 90 bpm. It really scared me. I'll see what the doctor thinks. David left to go back home and we already miss him!

Friday, December 11, 2009 7:19 PM CST

Kara is making progress today :) ! She was able to raise the head of her bed and then actually got up a bit later and walked down the hallway and back. Dr. Frim came in and said she will be in the hospital until Tues. and then to the Ronald McDonald House until Christmas Eve. He said we could start to head home that morning! That is what we have been hoping for...to make it home for Christmas Eve and be with our families :) (Kara has already been in the hospital for a month and we miss home)! She will still come home with her Picc line and still need antibiotics for a week, or so. The muscles in her neck are still sore from being pulled together so tightly and she still has headache pain, but is doing better. Praying for No More Leaking!!

Sarah Hall is making progress and her family is celebrating the removal of the lung tumor :)! Tayla is doing good right now too.

Thursday, December 10, 2009 4:04 PM CST

Wow!!! Thank you "Firelands School District" for the most Generous Gift!! Your outpouring of Love, Generosity and Kindness are completely appreciated by our family!! We are so grateful!! God Bless You All !!

Sarah Hall's surgery is over and she is stable and doing well. The lung tumor was sucessfully removed!! Thank God! Please keep her in your prayers as she recovers from this serious surgery. Her father called us and Sarah is one floor down from Kara, so they have been keeping us updated. Also, Tayla is in the room next to Kara, but I haven't gotten the chance to speak to her mother since she came up to this floor. Will check on her later.

Kara has been in pain, but has been resting for awhile which is so good! She has not been able to raise the head of her bed anymore than this morning and has not gotten up. This surgery was hard on her! Her head is still wrapped and I noticed a bruise on her chin/neck area. The muscles in and around her neck have been pulled so tight to bring her incision together! I cry for all she has endured and all she has suffered!! Whew..it's been difficult, but we are praying for the best outcome and for this incision to completely heal!! We just have to thank Firelands School District again!! What a Blessing!! :)

Thursday, December 10, 2009 10:19 AM CST

Please keep Rick & Susan Hall's precious 12 year old daughter Sarah in your prayers! She is in surgery right now to remove a lung tumor. We met the Hall's, who are from Michigan, at the Ronald McDonald House last month. Also, prayers for Tayla, who had shunt surgery last night. She was coming out of surgery, as Kara was going in!

Kara has been in extreme pain!! She moaned all night long from 2:00 am when she got out of surgery until 7:00 am! She was not allowed to have a pain pump because she is allergic to morphine and dilauded, so it becomes harder to control her pain with drugs that are not as strong as those two. Her face is swollen and her head is wrapped tightly and she is laying flat. She finally fell asleep. Dr. Frim said she will feel lousy for a few days! This morning she woke and said a prayer for Sarah who is having surgery right now to remove a lung tumor. Sarah visited with Kara yesterday morning and they had a great conversation! Thanks again for all the prayers! We're praying for Kara's pain to decrease and for her to feel better soon and for all to go well for Sarah!

Thursday, December 10, 2009 0:03 AM CST

Please keep Rick & Susan Hall's precious 12 year old daughter Sarah in your prayers! She is having surgery this morning at 7:30 am to remove a lung tumor. We met the Hall's, who are from Michigan, at the Ronald McDonald House last month.

***Update 2:00 am - Kara is out of surgery. Dr. Frim came out and spoke to us. Kara had a hole in her dura where a couple of stitches had come undone, so Dr. Frim repaired that area in the dura. He also cut some of the skin/scar so that it would close together better. He overlapped muscle flaps to close her up and he said that the scar now looks like it is pulled up some all the way up and down to help insure that it will stay closed and should go down over time. He said she will be in quite a bit of pain due to her muscles being manipulated, so she will be on a pain pump. We have not seen her yet, so hopefully we will soon!***

It's been exactly a month since Kara's surgery and she's having another one. Close to a month in the hospital. She was taken back to surgery about 45 min. ago. The plastic surgeon is not here and Dr. Frim was not sure if he would need him at another time. Dr. Frim said this surgery could take 2 hours, or could take 4 hours etc. Not sure what he will find. He's trying to find the source of the leak! David got here just as they were taking her down to the surgery floor :) We kissed her goodbye and told her we loved her at the "red line" and are now in the waiting room alone.

Wednesday, December 9, 2009 1:01 PM CST

***Update 7:00 pm - No word yet on what exact time Kara will be taken back for surgery. She is still leaking spinal fluid all over her pillow, so the nurse re-wrapped her head. A plastic surgeon named Dr. Reid came in and said he will be there for Kara's surgery as well and might have to take an area below the neck to help the area that will not heal. Dr. Frim is not sure how far he will have to go back in on Kara. There have been tears from both Kara and myself, but we're still praying! David is on his way from Ohio, so we're praying he has safe travels.

***Update 3:00pm - Dr. Frim came in and unbandaged Kara's incision and it is leaking CSF again and dripping down her neck. He said he will be taking Kara back into surgery tonight!! Please pray for Kara and this whole situation!***

Here we are asking for more prayer again...Kara thinks her incision is leaking spinal fluid under her bandage, so we are now waiting for neuro to come check!

Also asking for prayers for Rick and Susan Hall's precious 12 year old daughter Sarah, who is having surgery for removal of a lung tumor tomorrow morning here at Comer. They are from Michigan and we met them last month at the Ronald McDonald House. They are such a wonderful family and even came to visit Kara this morning. Please pray all goes well for Sarah!

Wednesday, December 9, 2009 7:58 AM CST

Yesterday the infectious disease docs came by and said that the only thing that grew from the Cleveland spinal tap was staphylococcus epidermidis. It is not the more serious staph though. They will treat her with continued antibiotics (Vancomycin), which she has been on for the past week. She will be on it for 2 more weeks. I guess this could be the reason for the high white count in Kara's CSF. She was given a dose of steroids per Dr. Frim yesterday and I thought she did a bit better overall, but they cannot continue to give it because steroids do not promote wound healing and they just stitched up the back of her head from leaking CSF on Sunday. So far she is still sleeping this morning, so we will see how things go today. She has still been battling terrible headache pain and is light sensitive. I'm hoping she can get up and walk around, because she has been so weak. Neuro came by this morning and checked the back of her head and it's still dry and so is the lower back (one stitch) where her lumbar drain was pulled last Friday. So far no growth from the spinal tap done here on Monday..wow can't believe I can remember all these days, as my days are so mixed up and I can never remember what day it is! Thank you all for the continued prayers and for all the sweet messages!! Still believing God will bring her through all of this and thanking Him for the progress she is making!

Tuesday, December 8, 2009 9:36 AM CST

***Update 4:00 pm - Dr. Frim came in and said he feels Kara has had chemical meningitis all along and said Kara would be here awhile. He says the problem is that she still has bovine pericardium scarred to her cerebellum and when they go in and do surgery it exposes that area and it gets inflammed etc. He cannot remove it though, as it would harm her and make her cerebellum raw. They gave her a dose of steroids to see if she would feel better. So far her head is still hurting. I talked to Judy (NP) and she said that her white blood cell count in her CSF is still high, but lower than it was in Cleveland. She said she would expect it to be so high after all she has been through. I asked if they would need to do another spinal tap at some point and Dr. Frim said they will see how she does and I asked if they were going to give her more doses of steroids and again, he said they will see how she does. We're still praying and trusting that God will bring her through this.***

***Update 1:00 pm - An infectious disease doctor came in and said that there is a high white blood cell count in Kara's CSF from yesterday. The doctor is going to talk to Dr. Frim about it. I'm praying this will get better and asking for prayers for the white count/infection to go down. Thanks! ***

Thank you Lord and Thanks to all the prayer warriors! Kara is making some progress and she is getting near the corner...and we're hoping she will turn it real soon :) !

Neuro came in and said the first Gram Tests are negative for bacteria (it will be another 5 days for the rest). The inflammation markers are coming down and so is the white count. Her fever is down as well and the leak is still dry :)!! Dr. Frim stopped by last night and said there was just one test that came back from the Cleveland Clinic spinal tap and it was positive for staphylococcus epidermidis, but the antibiotics she has been on should take care of it. He still thinks she has been battling Chemical Meningitis, so they may treat her for it with steroids, but we're waiting to see about that today.

She is still having terrible headache pain and still on strong meds for it! She is very tired and is still weak and shaky and hasn't gotten up to walk around yet, so maybe she can try today (not sure). Her head is still wrapped up and she is still staying upright (even after one month)- no laying down to sleep! Continue to pray for the pain to decrease and go away. We are just thankful for all the prayers and thankful that God is answering them :) !!

Monday, December 7, 2009 7:08 AM CST

***Update 4:00 pm - Kara's spinal tap is done! She is sleeping and will be for a couple hours and she is to lay flat as well. Judy said her pressure was "16" and the fluid came out really slow, so she was surprised since Kara had been leaking so much CSF from her incision this past week. She thought it might be lower due to all the leaking lately, but we're sure happy about the result and it's better than "28" like last week. Also, the fluid looked clear. Judy said they will send it off to be checked and we should know the beginning results soon. She also said Kara may have a low pressure headache, because she drained her down too. So glad this procedure is over! Thanks for the prayers !! I'll update when I find out the results. Also, hoping to see Dr. Frim..maybe late tonight.

***Update 12:00 noon - Kara will have the spinal tap with sedation at 2:00 pm CST. I prayed God would "obliterate" any infection/fever! I thought it was the appropriate word to pray!

***Update 9:30 am - Judy from neuro came in and said Dr. Frim wants Kara to have a spinal tap done today. They want to check to see if things have changed since the last tap in Cleveland. They are concerned she has a fever and has been on the most powerful antibiotics and they want to treat it properly. I must say that Kara feels like she is just "Done" after hearing she has to have another tap. Judy is checking to see if the sedation team is ready sometime today, so that Kara doesn't have to have it done completely awake like she was in Cleveland. Please keep those prayers coming! Thank you!

In the middle of the night Kara had a fever of 102 and was shaking. She had been between 98.4 and 100.6, so not sure why it went so high at this point, because she has been on the strongest antibiotics since last week. I just kept praying that it would come down. They gave her tylenol and it dropped back down to 99.0, so they will keep giving her that. Neuro came in and said the incision is still dry :) Thank God! They will wait and keep checking. They may call in infectious disease due to the fever. My concern was that they stitched her up yesterday and now there was a fever, so if all the prayer warriors out there could you please pray for no infection and for her fever to go away and continued no leaking & less head pain!! Thanks for all the prayers already given and for Great Lakes Church praying for Kara yesterday during their service (How Awesome) :)! I will update later! (Kara and I are missing David, as he was here overnight and had to go back the next day for work - Love You David) :)

Saturday, December 5, 2009 10:46 PM CST

***Update Sunday 11:00 am - Neuro came in per Dr. Frim and stitched up the incision. It took about 16 stitches and then they used dermabond (skin glue) and covered the incision and wrapped her head back up.

***Update Sunday 7:30 am - Kara woke up and even with her head wrapped with gauze..her pillow case and part of her shirt were soaked with CSF. Waiting for neuro to come. (Dr. Frim does not return until tomorrow).

It's so very hard to see our daughter in pain! She had been hanging in there, but her head starting hurting more and more and then she started throwing up. Poor girl. She did not end up with a lumbar drain yet. Earlier her incision was leaking CSF in a few spots, so her head has been wrapped ever since. Hoping she can fall asleep and rest! We continue to pray, but are oh so very weary.

Friday, December 4, 2009 4:53 PM CST

***Update: After a 6 hour bumpy ambulance ride...we made it to Chicago with Kara at 3:30 am (Ohio Time). She is going to have a lumbar drain put in again, since the Cleveland Clinic removed the one she had right before her trip back to Chicago. Thanks for all the prayers for a safe trip.***

Kara is being transferred by ambulance to Chicago this evening. Pray she travels well and we get there safe! She is still leaking CSF, so we will be glad to have her under Dr. Frim's care.

Friday, December 4, 2009 5:38 AM CST

Two neuro residents came in already and said she is still leaking more than they want. They could see a couple spots where it is leaking, so they mentioned putting in some stitches and they mentioned surgery (and increasing the draining). Whew...not what we wanted to hear. I know they have been avoiding putting stitches in because this can introduce more bacteria and infection, but that's what they would do first before surgery. Even the mention of surgery is extremely upsetting, as Kara is used to being under the care of Dr. Frim. They said sometimes they transfer patients back to their own doctor. It's hard right now and hard not to be emotional and it's a battle not to let worry creep in, but we know God is in control and we're leaning on Him. (Psalm 107:20)

We're asking that there would be continued prayers for Kara and for this leak to stop!

Thursday, December 3, 2009 7:25 PM CST

We had surprise visitors tonight....our dear neighbors "Diane and Tim Alcorn" surprised us :) They tried to come back to the PICU to visit Kara, but they were turned away, because only parents & grandparents can visit. They brought with them an Edible Arrangement that the Kane Family sent to our home for Kara (Thank you Kane Family :)!! Diane ended up sneaking back to see Kara and almost got busted haha. Kara was so glad to see her! Thanks Diane & Tim for taking the time to come see us!

Kara is hanging in there. She was having some pain issues most of the day, so some meds were changed around. There is still some CSF leaking, but they say it has slowed down. Please continue to pray that the leak will completely stop!

Thursday, December 3, 2009 10:28 AM CST

The infectious disease doctors came in and said there is still no new growth at this time! I just keep thanking God each time they say that :)! They say it's because of the antibiotics given right away in our local E.R. and of course they say the inflammation and white count were sky high and so they are continuing to treat her for bacterial meningitis. The neuro team came in and said the leaking is less and going in the right direction! They are draining her aggressively, so her head is hurting more than normal. They may have to back off just a bit on the draining, but Kara doesn't want that and just wants to get better soon!! She was experiencing some PVC's last night too and her heart monitor was going off, but so far today that's been better. Please continue to pray for our girl ! Thanks to all the prayer warriors out there and for all the sweet messages!

Wednesday, December 2, 2009 6:27 AM CST

***Update: 1:30 pm - Thank you Cathy Poznik for bringing us all the delicious food! Kara loved the fruit & the Christmas Fern. It was good to see another "Chiari Mom" !! - Kara just got a PICC line put in. They say she will be on IV antibiotics for weeks after she gets home from the hospital. The PICU doctor said her blood work is coming back better than it had. There is still no growth yet from the spinal fluid cultures. They feel she was at the beginning stages of bacterial meningitis and the antibiotic she was given early in our local E.R. helped the situation. They will continue to treat her for bacterial meningitis.***

We are still here in the Cleveland Clinic PICU. Neuro came in and said her incision is still leaking, but they thought it was leaking less. They are going to be more aggressive with the draining and instead of draining 5cc and hour they will drain her at 10cc an hour. They are still treating her for bacterial meningitis, so two antibiotics are on board. Kara's head has been hurting and she is still light sensitive, so the blinds have been closed and lights off. She blew 2 IVs late last night and was not happy about that, but did get some rest after that. Dr. Luciano came in to see Kara yesterday afternoon and said he was headed to the same Pediatric Neurosurgeon's Conference as Dr. Frim. Dr. Frim emailed me this morning and said he was able to speak to Dr. Luciano and get caught up on Kara's situation.

Please continue to pray for the leak and infection to stop! We appreciate all the prayers and support!

Tuesday, December 1, 2009 2:09 PM CST

Thank you Michelle Gameron for updating the past few days (Love you) :) !!

Kara is in the PICU at the Cleveland Clinic. She has meningitis, but not sure exactly what type yet and that could be because she received a dose of antibiotics yesterday at 4:00 am at the local E.R. She has been leaking spinal fluid from the back of her head, so they put in a lumbar drain this morning and have started antibiotics. Please pray for the infection and leaking to stop! We have been praying so hard for our girl !

Tuesday, December 1, 2009 9:57 AM CST

I have been updating Kara's page for her family. I just got a text message from Sherri that Kara is in surgery now to have the lumbar drain put in. Please keep this entire family in your prayers.

I will update again when I hear more.

Monday, November 30, 2009 7:03 AM CST

Tuesday, December 1, 2009 Update from Sherri (via Michelle) --

Kara is still leaking spinal fluid from her incision. The doctors are pretty sure she has bacterial meningitis. They have started her on IV antibiotics and will be putting in a lumbar drain.

Please keep this wonderful family in your prayers as they are needed more than ever right now. They would be more at ease if they were in Chicago with Dr. Frim, but he is away.

Please pray.....

**UPDATE 3:40 p.m.**
Kara is going to have an MRI done. She is leaking out of her incision. Bloodwork was also done so they are waiting on that.
A resident there at the Cleveland Clinic was discussing with them the idea of a shunt or lumbar drain. Please keep all of them in prayer that this leak will stop on its own and all testings will come back ok.

Good morning, this is Michelle Gameron updating Kara's webpage for Kara and her family.
I spoke with Sherri this morning and Kara has been having a terrible time.
Due to the fact that Kara has been in pain, vomiting, and running a fever they took her to the local E.R. where they discovered that her white blood count was high also.

At 8:30 a.m. they will be transporting Kara by ambulance over to the Cleveland Clinic.

PLEASE pray for Kara and for the strength of her parents and family. They have to be both emotionally and physically exhausted.
I am sure that once they have a better idea of what is going on either Sherri or David will update this page. Until then, please please keep all of them in prayer.

Sunday, November 29, 2009 9:39 AM CST

Please keep Kara & my Mother in your prayers. Kara has been feeling very sick. She had been out and about for quite sometime yesterday walking around. Since then she has had a horrible throbbing low pressure type headache. We checked the back of her head and the seroma/leak is a bit larger than before. Her incision looked fine. She is taking Lasix, so not sure if that is making the headache worse. As the evening wore on she began moaning from the pain and this morning started vomitting and has a 101.0 fever. We paged neurosurgery to let them know. My mother is having surgery tomorrow morning, so prayers would be appreciated for both (Thank you)!

Wednesday, November 25, 2009 5:47 PM CST

Happy Thanksgiving! Thanks is what we are giving to God :)!! We just arrived home! Kara saw Dr. Frim this morning and he unwrapped her head and took a look at her incision. The gauze was still dry! He thought the incision looked good and that the leak was a seroma. The little time the wrap was off the internal leak got a bit larger. Dr. Frim wants her head wrapped indefinitely until the internal leak stops. She is to continue to sleep sitting upright and will be on Lasix for a month. She had been on Diamox, but she kept throwing up on it and has lost about 9 lbs. in 3 weeks. She will not be able to drive right now and Dr. Frim wants us to check in with him by way of email every week. We are thrilled to be home and want to thank everyone for the prayers !! :)

Wednesday, November 25, 2009 8:09 AM CST

We were an hour away from home when Kara's incision started leaking spinal fluid. We were able to see our wonderful families and sleep in our own house. Dr. Frim wanted us to come back, so we left yesterday and drove all the way back to Chicago! We were all exhausted and very emotional (our faith being tested)! Our good friend Jacqui Ladikos came over with her son Jordan and they prayed very hard over Kara and annointed her with oil before we left to come back! We arrived at Comer E.R. at 9:00 pm. There was talk that Kara would need stitched back up and IV antibiotics given, or even a lumbar drain. Neuro came in and checked her bandage, which had been changed at noon earlier in the day and the incision had still been leaking a bit at that time. The bandage was dry :) :) !! Thank God!! We were sent back over to the RMH and Kara was told to continue to sleep sitting up. Dr. Frim wants to see Kara today and check her over himself. Not sure what time yet, or what the plan will be.

Monday, November 23, 2009 4:27 PM CST

Kara was checked and was told we could come home, but make sure to keep her head wrapped and keep sleeping sitting up and stay on Diamox. We were almost home, when Kara noticed that her incision was leaking externally!! We called Shannon (Dr. Frim's nurse) and she called back after speaking with Dr. Frim. Dr. Frim told us to come back tomorrow! Please pray for Kara and pray against infection and for the external leak to stop!!!

Sunday, November 22, 2009 3:32 PM CST

We're still hanging out at the RMH here in Chicago. Kara will see Dr. Frim in the morning, so he can check on the CSF leak. Thanks for the continued prayers!

Saturday, November 21, 2009 0:38 AM CST

We were just at the Comer E.R. with Kara for 4 hours. She has a pseudomeningocele (Internal CSF Leak). It didn't show up on her MRI from 2 days ago, but it showed up on the CT scan tonight. The plan is to still see Dr. Frim on Monday morning. We could really use more prayer for Kara. Pray that the leak will stop!

Friday, November 20, 2009 8:13 AM CST

Kara is still having some trouble with pain issues. She starts moaning in pain way before her meds are due. Hoping today will be a better day for her.

Thursday, November 19, 2009 3:48 PM CST

We are at the Ronald McDonald House :) !! Kara was discharged from the hospital earlier today :) !!

Wednesday, November 18, 2009 8:24 PM CST

Dr. Frim looked at Kara's MRIs while she was still having it done. He came out and told us that everything looked great and he would check the rest of the pictures later :)!!! He said her spinal cord is now laying normal and he did not see a CSF leak :)!!! He said he wished he would have talked her into having the surgery a lot earlier! He's really happy with how everything has turned out!

Kara's head is to remain wrapped for tonight and they will check it in the morning and if there is still no leak, then she can finally have the wrap removed. She will then be discharged over to the Ronald McDonald House, but very late in the day/evening. Dr. Frim wants her to remain sleeping upright, even at the Ronald McDonald House and stay there until Monday morning. On Monday they will check her over at Comer.

We are so happy and thanking God for answered prayers! Thanks to everyone for praying and for all the support!

Tuesday, November 17, 2009 8:42 PM CST

Dr. Frim came by at 7:30 pm and checked Kara's head and guess what?....the bandage was dry :) !! Kara was so happy that she cried! Dr. Frim has ordered an MRI (Brain, Cervical & CINE) for tomorrow, or the next day. We're pretty sure he wants to make sure she does not have a pseudomeningocele. He also wants her head to remain tightly bandaged and for her to continue to stay upright (no laying down, not even to sleep). He said she will still be in the hospital for the next few days. She is still on Diamox to help decrease fluid in her body. We prayed hard today and kept trusting God that the leak would stop, so we are very thankful to Him! Thank you everyone for your prayers!

Tuesday, November 17, 2009 1:02 PM CST

Neuro came in and unwrapped Kara's bandage around her head. There is no increase in the leak! They re-bandaged her and want her to stay on antibiotics and they also started her on Diamox to help decrease fluid in her body. She is still not allowed to lay down. Dr. Frim will come by later to check on her (he has been in surgery). We are praying hard and believing the leak will stop for good and that no other surgery is needed!

Monday, November 16, 2009 3:03 PM CST

*** Update 5:45 pm. Neuro checked Kara's incision and it's still leaking. They wrapped up her head again and are starting her on IV antibiotics. She is to have nothing to eat, or drink after midnight. Neuro is waiting to see what Dr. Frim wants to do in the morning. ***

Kara's incision is leaking. Neuro came in and tightly wrapped her head! She's not allowed to lay down now. She will have to sleep sitting up. They said they will be back later tonight to check on her. They are not sure what they will be doing at this point. She also has an eye patch now to help with her double vision. Please keep Kara in your prayers! Pray the leaking will stop and pray against infection! Also, pray her eye problems will improve!

Monday, November 16, 2009 10:12 AM CST

*** Kara's incision is leaking, so please pray about this situation, we're waiting for neuro to come and check it !! ***

Things Kara has been dealing with: Possible leak and lots of anxiety all night, but after it was checked over a 7 hour time span the incision is still intact! Multiple blown IV's. Still dealing with some pain issues! The most bothersome is blurry, double vision! She has said all along that she can not see properly and her right eye seems to wander a bit to the right. Right now she is seeing double, so they are going to give her an eye patch. They think it is from the brain stem being stretched and now it is not. We're praying that symptom will go away soon! She has not walked yet, but will try soon!

Sunday, November 15, 2009 8:32 AM CST

Last night was frustrating again. Kara was having pain issues and yet she's on heavy doses of her meds. She is also having a terrible time sleeping and due to one med, her heart rate kept dropping into the mid 40's and she still needed oxygen, so that was contributing to the sleep issues too, as her alarms kept sounding off. She is planning on walking today and we're hoping she will continue to improve with the pain issues. Thanks for the continued prayer!

Saturday, November 14, 2009 6:01 PM CST

Kara made a lot of progress today (since steroids were given)! God is really answering all the prayers! She sat in a chair today, she is eating too. Her IV fluids have been stopped. The greatest news......She has been moved from the PICU to the Regular Floor :) !! She had so many visitors from Ohio today :)! She is extremely tired and still experiencing some pain, but they are still giving her quite a bit of pain meds. Dr. Frim wants the steroids to continue for 4 more days. Thank you to everyone for all the prayers & support !!

Thursday, November 12, 2009 4:51 PM CST

***Update: 1:00 pm. Steroids given and she is feeling somewhat better at this time :) She's still on oxygen..

***Update: 9:40 am. Kara had a terrible night and an even more horrible morning! More screaming in pain and she said she felt like dying! Praying that she will turn the corner soon! Please keep praying!

***Update: It's 2:20am David and I are still awake. Kara had another bout of pain increase and more meds were given. Her oxygen level kept dipping, so now she's back on oxygen! Please keep those prayers coming! We prayed with Kara earlier (she asked us to) and we've continued.***

Last night was horrific! It was horrible for us to watch our daughter scream in pain for hours! They gave her the maximum amount of medication and it still didn't help. Finally they tried benadryl and she fell asleep around 2 am. She was back up and moaning by 6 am. She continued on with that and with constant chatter in her weak voice. She has had a hard time falling asleep. Her medications were changed again and she was able to fall asleep for an hour, or two this afternoon. We are hoping and praying for a better night!

Dr. Frim spoke with us about her surgery. He said that she was tethered in two spots and her brain looked like a tent. Everytime he tried to de-tether the lower portion it made her blood pressure and heart rate double! Everytime he tried to de-tether the upper portion it made her blood pressure drop and plummet into the single digits! He said her brain stem was really being stretched and that was causing the dysautonomia (POTS) and making her almost pass out. After he was able to de-tether the brain dropped back down into place, where it was supposed to be and Dr. Frim said it was quite traumatic to see. He said that Kara still has bovine pericardium scarred to her cerebellum and it's too dangerous to remove it, as it would harm her. He said that normally does not happen and that her body never wanted the bovine and here it's scarred together now. It really makes us wonder if that has not contributed to her head pain over the years too.

Thank you for all the prayers and support!! Please continue to pray for Kara's pain issues!

Wednesday, November 11, 2009 11:50 PM CST

Kara had been resting better today, but tonight she is doing terrible again!! It's just awful...she is struggling with pain issues! Please continue to pray.

Wednesday, November 11, 2009 2:52 PM CST

***Update: Kara's meds were changed and she is resting. She has not been awake all day.***

Kara is doing better than this morning. Her pain is being controlled every 4 hours. At about 3-1/2 hours she starts to get worked up again. They are going to try changing her medications to see if that will help. She hasn't opened her eyes yet, because her face/eyes are swollen. I wanted to thank Dr. Laura Holena for the Beautiful Balloon Bouquet and also, thank you to Beth De La Cruz for the healthy food :) !! Thanks for all the prayers and support! We can certainly feel the prayers!

Wednesday, November 11, 2009 4:22 AM CST

***Update - Kara has been in agony with pain!! She keeps yelling out that something is wrong and she's never felt this way before with previous surgeries!! They finally gave her more meds and she fell asleep! Because she has coded in the past, she cannot have the better drugs to help her. We are waiting to talk to neurosurgery, as we are concerned!***

Kara could really use some prayer! She has been in horrible, horrible pain and has been crying out with it! Please pray that her pain will become tolerable! We haven't slept yet because we are trying to comfort her! Our hearts are so heavy for her!

Tuesday, November 10, 2009 8:54 PM CST

Kara's surgery was 7 hours long. She came right out of surgery and straight to Comer PICU. When she arrived she was in so much pain that she was yelling out. It was once again so sad to see her like that! Janet Hutcheson found me and gave me a big hug (Thanks Janet)! Kara struggled for awhile until they could get her pain under control. She is resting at this time! We're hoping when she wakes up again, she will feel less pain, but right now she is moaning a little bit in her sleep. Dr. Frim dropped by quickly and said he would give us the details tomorrow. He did tell us that her brain was pulled forward in two places and tethered to her dura and when he detatched it the brain fell back down into place. He said it was quite traumatic! Right now her vitals look good and we can really feel the prayers from everyone!!! Thank you all! We are exhausted and will update again tomorrow.

Tuesday, November 10, 2009 1:04 PM CST

*** (Update) Kara is still in the O.R. We haven't seen her in 6 hours! Hoping the surgery will be over soon and we can see our girl ! ***

Kara went back to surgery at 11:30 am (CST) which is 12:30 pm (Ohio time). She wrote us letters to read after she went back, so that was emotional. We have prayed hard and are just waiting now. Dr. Frim said he would let us know how she was doing at some point. No one is scheduled after Kara, so he said it would be awhile.

Sunday, November 8, 2009 9:18 PM CST

We are headed to Chicago. Kara's surgery is scheduled for Tuesday, November 10th at 10:30 am (CST), keep in mind that Ohio is an hour ahead. Dr. Frim said it will take half of a day to complete the surgery and that she may be out of surgery anywhere from (5 pm to 7 pm CST). We will update here (or a slight possibility on facebook). Brain and Spinal Cord swelling is expected right away and will peak at 48-72 hours. Please keep Kara in your prayers and pray her pain will be controlled and that all will go well.

Monday, October 26, 2009 8:08 PM CDT

It's been almost 3 years since Kara was diagnosed with her spinal cord being tethered to her brain stem. Her symptoms have continued to get worse over time and she can no longer tolerate them. She has decided to go ahead with surgery and she is scheduled for November 10th. It is emotionally hard on Kara and our family to realize she will have to endure her 13th neurosurgery. It's been a long road, but we are praying and holding onto our faith that God will see Kara through this. We would appreciate all the prayers we can get, so please send one up for our girl.

Wednesday, October 21, 2009 3:40 PM CDT

We had a great time at the Column of Hope (Chiari & Syringomyelia Research Foundation) 7th Annual "Working Toward a Day Without Pain" Gala :) !! It was so nice to see everyone and Kara's photograph & print helped raise approx. $700.00 to help find a cure :) Thank you to the Kane family for their hard work! We appreciate it!

Kara is not feeling well today and left her classes early. Her spinal cord is throbbing/piercing and her head is hurting. She can't move her head to the side, up/down. The pain is excruciating! We're feeling pretty frustrated!

We heard back from Dr. Frim again and he said that if the brain stem/spinal cord get stretched too much..it can cause injury. The injury is in the way of malfunctioning, with symptoms like fainting, swallowing problems, neck/back pain etc. The surgery options remain the same and Kara is carefully thinking everything over.

Friday, October 16, 2009 10:47 AM CDT

We received answers concerning Kara's MRI that we were not expecting. Dr. Frim told us that there is more tethering and more of a bulging backward of Kara's cervical spinal cord. The tethering is stretching her brain stem and causing the near passing out episodes. We asked if the brain stem and spinal cord can get stretched too much and Dr. Frim said, "yes". Not sure what else that can lead to and we're waiting for that answer. This was a lot to take in and we just really have to keep relying on our faith in God. It's the only way we can get through this situation.

We are heading to the Column of Hope (Chiari & Syringomyelia Research Foundation) Gala this weekend. It is being held in Buffalo, NY and Kara has two pieces of artwork that are being auctioned off. We are looking forward to attending this event and keeping our mind off of what is going on. We hope to have a wonderful weekend and are looking forward to seeing the Gameron and Kane Families!! Thanks to the Kane family for all they do!!

Please keep Kara and all the others who suffer from Chiari Malformation and related disorders in your prayers.

Tuesday, October 13, 2009 6:29 PM CDT

Dr. Frim emailed us regarding Kara's MRI results. We emailed him back and are waiting for some more questions to be answered.

Monday, October 5, 2009 8:48 AM CDT

Hoping this week we will hear the results of Kara's MRI!

Two little ones (Gabe & Emily) are having surgery in Chicago today. Please keep them in your prayers:

www.caringbridge.org/visit/gabehartman

www.caringbridge.org/visit/emilycullen

Monday, September 28, 2009 2:50 PM CDT

***Update: Dr. Frim thinks the passing out symptoms are due to the tethering. Also, the mailroom in Chicago cannot locate Kara's MRI CD, so they are requesting another one from the Cleveland Clinic. Maybe they will still come across it in the meantime.

Kara came very close to passing out today at college. She had been walking to her car and then back to class and that's when she became extremely dizzy and everything started going sideways and her hearing decreased. Someone opened the door for her and she immediately knelt down in the hallway, so she wouldn't fall. Not sure why this happened today. Her head had been hurting really bad, but that's the usual. Sometimes she has felt that way upon standing, but this time she had been up and walking around for awhile. I emailed Dr. Frim to let him know and we're still waiting for the MRI results. At this time she is feeling better :)

Sunday, September 20, 2009 8:15 PM CDT

Our girl ended up in the E.R. today! Her pain was so terrible she was sobbing! It's so hard to see her like that...it really pulls at our hearts! They ended up giving her an injection and she's feeling better now! I told my dear friend and fellow Chiari mom (Michelle Gameron www.caringbridge.org/nj/jessica) that I felt defeated and she said the greatest thing to me. She said, "Never Defeated....only Higher Hurdles." !! (How true) :)

We're still waiting to get the results of Kara's MRI from last week. Hopefully we will hear something this week.

Monday, September 14, 2009 6:57 PM CDT

Kara is having her 6 month MRI done tomorrow in Cleveland. She's having Brain, Spinal Cord, Flexion/Extension and CINE. It should take about 2 hours. The results will be sent to Dr. Frim.

Thursday, September 10, 2009 8:07 AM CDT

Kara is experiencing a terrible squeezing pain on the back left hand side of her head (beside her regular head pain). She is on her way to class though. She is always so strong and just keeps functioning despite the pain!

Friday, September 4, 2009 9:36 PM CDT

Thanks for all the prayers for Calvin. He is now home from the hospital and feeling better!
www.caringbridge.org/visit/poznikboys

Kara will be having another MRI (Brain, Spinal Cord, Flexion/Extension and CINE Flow) on Sept 15th. Dr. Frim likes for her to have one every 6 months and it's that time again.

Monday, August 31, 2009 8:49 AM CDT

Please keep Calvin in your prayers. He was taken back to the E.R. last night and is in the PICU again!

www.caringbridge.org/visit/poznikboys

Thursday, August 27, 2009 10:55 AM CDT

Thanks for the prayers. Calvin & Jessica are both feeling better! :)

Yesterday, Kara had a terrible afternoon. She called in between her classes and was crying in pain (head & spinal cord) and was experiencing POTS symptoms. She ended up leaving an hour early, but felt somewhat better later in the day.

Monday, August 24, 2009 10:38 PM CDT

There are some fellow Chiarians that could use some prayer.

Calvin Poznik just had emergency shunt surgery yesterday and is facing another surgery tomorrow morning:

www.caringbridge.org/visit/poznikboys

Jessica Gameron is having surgery (wisdom teeth) tomorrow morning. She is having it done in the O.R.:

www.caringbridge.org/nj/jessica

Friday, August 14, 2009 1:54 PM CDT

No new trips to the E.R....so that's good :) The head pain is still present, but she is functioning well right now. She starts her 2nd year of college this coming Monday. School causes her to have to look down and that pulls on her tethered spinal cord/brain stem and seems to make her pain worse. I'm hoping this semester will go a lot better than spring semester did!

Saturday, August 1, 2009 8:08 AM CDT

Kara ended up in the E.R. last night. She got a shot, so her pain went from a "9" down to a "6" and she felt a lot better after that! Hoping today will be a better day for her.

Tuesday, July 28, 2009 12:59 AM CDT

Kara has been doing okay. She's been keeping busy. The POTS symptoms seem to be a bit better right now (without medication). The head pain has been bad and she has been complaining quite a bit the past two days. She's in bed right now, but I'm sure when she wakes up she will keep going.

Wednesday, July 22, 2009 7:55 AM CDT

Please keep our friend Calvin in your prayers. He is having a Chiari related surgery today:

www.caringbridge.org/visit/poznikboys

Kara did okay on the stress test. She asked to stop after she began to feel weak. The results came out fine and it's good to know that there is nothing structally wrong with her heart. The holter monitor test showed increased heart rate when she is not doing much. The diagnosis is still POTS (postural orthostatic tachycardia syndrome). This is being caused by the spinal cord being tethered to her brain stem. He said that she could also have something where the heart just over reacts to everything. The doctor is starting her on a medication to help decrease the tachycardia that she feels everyday. He wants to see how she does on that medication and then possibly start another med that will help raise her blood pressure and stop it from being so low.

Sunday, July 19, 2009 9:23 AM CDT

Kara has had ups & downs. She went to the zoo last week and had fun, but had trouble with POTS symptoms half way through. She felt weak and felt like passing out and her headache pain was bad. Then we were grocery shopping and she felt sick in the store and had to sit down. We also went to see a movie, which went well because of course she was sitting. She did bring her travel pillow (scooby doo) for her neck, but then made a joke about people thinking she brought her stuffed animal with her to the movies :-D !

Kara has a pain management appt. tomorrow and a stress test and appt. afterward with her local cardiologist on Tues. (hoping that will go well).

Saturday, July 11, 2009 9:46 AM CDT

Everything went well with Kara's appt. They want her to try a new medication for the POTS symptoms she has been experiencing. The symptoms seemed to have increased over the past month and it's all pointing back to the tethered spinal cord at the brain stem. She has also been having more problems with sitting in a car, or higher backed chairs. Her chin points a bit downward in that position and that causes pulling on her spinal cord and causes pain. She went out and purchased a travel pillow that fits around her neck. She had to purchase the child's size and the only ones avaiable were animal themed, so she bought one that looks like scooby doo ha :D

Please keep our friend Calvin in your prayers. He is going to have a Chiari related surgery on July 22nd :

www.caringbridge.org/visit/poznikboys

Also, our little friend Gabe just had major surgery:

www.caringbridge.org/visit/gabehartman

Thursday, July 9, 2009 6:09 PM CDT

** Please visit our dear friend Ann's page. She has struggled terribly with Pseudotumor Cerebri, but is going to run a triathalon soon!

www.caringbridge.org/visit/annbanfield

Kara has been hanging in there. There is still the ever present headache pain, but the dysautonomia (POTS) symptoms have been really bothersome! Tomorrow Kara has an appt. at Dr. Grubb's office in Toledo. The last time she saw him was one year ago, so it's time to go back and see what can be done.

Wednesday, June 24, 2009 9:15 AM CDT

First off, I want to thank everyone so much for all of the prayers and messages that are left for me in the guestbook everyday. Lately, going through this struggle I often feel helpless or alone so it is a comfort to see all the people who truly care about my health.

My pain has continued to worsen with each day. The headaches are excruciating and my spinal cord feels like its burning and pulling. I just feel like there is never any relief and I wish for once it would just let up- its aggrivating! I'm really beginning to think over the untethering of my brain stem/spinal cord surgery that Dr. Frim suggested, but the outcome to feel better is not guaranteed.

Last night was a rough night. My mom took me to the ER due to the terrible pain and we were there until 1am! I then got home and finally went to sleep. I really could not get through any of this without the support and love from my family. My mom and dad sacrifice a lot to make sure i'm feeling better and never leave my side in the hospital.

Kara

Saturday, June 20, 2009 12:11 AM CDT

Kara is doing ok. She is still experiencing the headache pain and dysautonomia symptoms on a daily basis. She woke up yesterday with a different type of headache that she thought was pressure related. She emailed Dr. Frim and he thinks it is might be the dysautonomia because it causes heart rate and blood pressure changes. He says that it is likely due to the brain stem dysfunction in some way :( Right now she is fighting through her pain and still going about each day the best she can :D !

Thursday, June 11, 2009 1:34 PM CDT

We would like to ask that you pray for two families. My sister's mother-in-law passed away last Friday from a brain tumor and then our dear friends John & Renaye Davidson lost their precious son Keith unexpectedly last Saturday and our hearts are heavy for them! Please pray for strength and comfort!

Kara has had her ups and downs. It seems as if the dysautonomia (POTS) has been just as bad as the head pain. Last night we were up with her until 3:30 am because she felt like passing out and felt weak. She did not want to go to the E.R.! Today she was called into work and decided to go in for a few hours. I think that sums up Kara :-D. She will not feel well, but somehow always keeps functioning! We really admire her strength!

(For more information on Dysautonomia (POTS) just click on the middle link below..www.dinet.org)

Thursday, May 28, 2009 6:52 AM CDT

Kara is officially done with her first year of college :D !
We're extremely proud of her! We really have no idea how she did it, because she has such terrible pain issues and lately keeps feeling like she will pass out at times. She has also been getting a new type of pain & symptom and she wondered if she were having some sort of mild seizure. She emailed Dr. Frim and he thought she might be having trouble with her 5th cranial nerve (Trigeminal Nerve) due to her brain stem stretch (tethering). She is to email him back and give him an update. She is keeping busy and is getting more rest now that school is over.

Wednesday, May 20, 2009 6:01 PM CDT

Kara has another final tomorrow and then she will be done with this semester and her first year of college:-)! This semester proved to be quite a challenge health wise compared to the first semester. She has been hanging in there lately and trying to deal with the feeling of passing out (it comes and goes). This afternoon her head pain increased and she laid down, but then began to play her guitar to keep her mind off of the pain :)

Monday, May 11, 2009 1:21 PM CDT

Kara felt like passing out at work again on Saturday. She made sure she took the beta blocker and the next day she didn't experience that symptom as much. Even though she complains of her head pain and gets exhausted easily, she continues to keep busy. She will be taking her college finals next week.

Tuesday, May 5, 2009 11:56 AM CDT

The doctor's office called and said that Kara's last thyroid blood tests (TSH 4) results came back normal :-) Great news! She has been hanging in there and keeping busy with work and school, but gets very fatigued at times. Her head pain is still present, but she continues to function:)

Wednesday, April 29, 2009 12:29 AM CDT

Kara went to the doctor yesterday. He is running another blood test on her (TSH 4). He said at Kara's age, when you have hyperthyroidism, that it could be due to an autoimmune problem (Hashimotos). The body attacks the thyroid gland. We will know more when the blood test comes back.

The doctor felt that the reason Kara keeps feeling like she is going to pass out is due to the dysautonomia (POTS) acting up. Her blood pressure tends to be low and when she sits up, or stands up her heart rate increases by quite a bit. Yesterday is was 70 bpm when she was sitting and it went to 124 bpm when she stood up! He is trying her on a very small dose of a beta blocker to see if that will help. None of this has stopped Kara too much. She just keeps going and trying to keep up with everything :-)

Sunday, April 26, 2009 2:02 PM CDT

Kara was not feeling well today and had to leave work a bit early. Of course she had a headache, but she also felt like passing out too. She often gets that symptom. She has lost quite a bit of weight and the doctor told us that her thyroid is running a little high. Kara has a doctor appt. tomorrow, so she'll discuss that with him. She tries to keep up with her schedule and in turn it exhausts her (she's in bed now).

Thursday, April 16, 2009 7:52 PM CDT

*** new pictures added ***

Today was a good day :) We went to the Cleveland Clinic to establish and sign the "Chiari & Syringomyelia Foundation" Cleveland, Ohio Chapter !! :-)

We met up with our dear friend Cathy Poznik and her sons Calvin and Travis and also got to meet Susan Pennypacker. Susan, David and myself will be volunteers for the Cleveland, Ohio Chapter of CSF :) Cathy is the Secretary for CSF. We are very excited about this endeavor. We were able to sign the certificate today and take a photo with Dr. Mark Luciano & Dr. Edward Benzel from The Cleveland Clinic (they are on the Medical Research Board of CSF). The link to the "Chiari & Syringomyelia Foundation" can be found below under "Links".

Friday, April 10, 2009 3:30 PM CDT

Happy Easter :) Kara is hanging in there. There are still ups and downs. When we arrived home last week we were all feeling very exhausted and a bit down, but the next day we were back to ourselves. Kara returned to some of her classes at college and work. Today at work she was feeling pretty bad, but she got through it. At the beginning of the week she saw our family doctor and he increased the dose of her pain patch. Last week Kara was able to get a massage (Thanks Traci) and we're now waiting to hear back about an appointment for acupuncture. Thanks for the continued support and prayers!

Wednesday, April 1, 2009 9:37 PM CDT

Kara only had a bit of trouble with the Ketamine Infusion (they gave it along with precedex) and at first felt like her mouth was going numb and that she couldn't swallow. She also experienced nystagmus, but then she finally fell asleep and the infusion lasted for 2-1/2 hours. When she woke she told us she had a few hallucinations. The sad part is that the drug did not work and it didn't really lower her pain. At least we tried the Lidocaine Infusion for 48 hours and the Precedex for 48 hours and now the Ketamine and know where we stand with those medications.

Kara's MRI still shows the spinal cord tethered to her brain stem with very little CSF flow. Pain management told us that there is no medication that will remove all of her pain and that since she has had the pain for so long, it has become a disease. They told us she will have to learn to deal with it. They felt there are no other med options. Dr. Frim said that along with Kara he has held off on surgery too. There is no guarantee it will remove her pain, but it may relieve her spinal cord pain, since she is having trouble looking down. He said there are 2 options. Either surgery, or something alternative like acupuncture etc. This is all a lot to think about.

We are now home and wanted to thank all of our family and dear friends for your support and prayers!! There is nothing better than prayer and we could not get through any of this without all of you :-)

Wednesday, April 1, 2009 10:28 AM CDT

Kara will be having the Ketamine Infusion in about an hour, or so. This is the last IV medication to try. Pray all will go well. We still haven't heard from Dr. Frim on her MRI yet.

Tuesday, March 31, 2009 9:44 AM CDT

Kara remains in the ICU. She is still on precedex. They had to decrease the dose last night, because her heartrate kept dropping too low. That made me nervous, but after they lowered it twice things got better. The pain management team mentioned last night that they may try a Ketamine Infusion today, but we haven't heard anything today. For sure Kara is going to have an MRI this afternoon. We'll try to update later. Thank you for the continued prayer! We're praying that if she has the Ketamine Infusion today, that she will not have side effects.

Monday, March 30, 2009 12:38 AM CDT

Kara is still in the ICU. They quit the Lidocaine Infusion because it didn't seem successful. They started her on precedex and it has knocked her out, which she didn't want to happen. They are going to infuse this for 24 hours and if this does not work, then they will try Ketamine next and add it along with the precedex at the same time. The precedex can decrease b/p and heartrate and the Ketamine can make you feel detached from your body and cause hallucinations. Please pray for no side effects from these drugs. Thank you all for your support and prayers :-)

Sunday, March 29, 2009 7:08 PM CDT

They are now going to increase the Lidocaine to the highest dose for Kara. Hoping it will help and also praying for no side effects.

Sunday, March 29, 2009 1:20 PM CDT

Kara is still in the PICU. She is still receiving the Lidocaine Infusion. They want her to continue on it for 48 hours total, so we will still be here tomorrow. They had decreased the dose because it was building up too much in her body, but now they said it is too low, so they increased the dose again. So far the Lidocaine has not helped her pain. She is still at a 7, so it's dissapointing so far. Hopefully we will see Dr. Frim tomorrow and find out what the next plan will be. Thank you to all who have kept in touch with us and offered their support & prayers :-)

Saturday, March 28, 2009 6:51 PM CDT

We brought Kara to the E.R. in Chicago after a day of her crying in pain. They gave her IV compazine and benadryl and that knocked her out. Dr. Frim camee up with a plan and Kara was admitted to the PICU. She is on a longer Lidocaine trial. They started it at 4:00 pm and she had a terrible anxiety reaction and begged us to take her home, so they gave her ativan and that has continued to keep her knocked out. She has not been awake much of the day. They are monitoring her closely and watching her heartrate and making sure no seizures occur etc. They will check her bloodwork soon to make sure the medcation is not becomming toxic and if not, then they will increase the dose. Thanks to everyone who has been praying.

Thursday, March 26, 2009 4:27 PM CDT

I heard from Dr. Frim that the in-patient pain management in the ICU would consist of Lidocaine. Not sure what to think on that because the short Lidocaine Infusion Kara had two weeks ago did not work. I emailed Dr. Frim's nurse to see if there were any other options, but I have not heard back yet. Our family doctor has Kara weaning off Neurontin, as that did not work out either. He increased one medication and decreased another. The increased one is making her feel so exhausted and it's hard to have the other one decreased. Kara is just not feeling well and she's getting tired of hiding it. Frustrating to say the least! I have no answers....I'm just continuing to pray.

Tuesday, March 17, 2009 3:06 PM CDT

After Kara had the Lidocaine Infusion, her pain went from an 8-9 down to a 6, but it only lasted for an hour or two and then it went right back up. By the time we stopped on the way home to eat, she was laying down in a booth. So far her pain remains the same and is not any better. We're trying not to get discouraged and we're praying about the situation and trusting in God's guidance. We've put in a call to Chicago to see what the next step should be. Today Kara has an appt. with our local doctor and her MRI has been rescheduled for March 30th.

Saturday, March 14, 2009 8:25 AM CDT

Kara's procedure went well. No bad side effects :) She had a little blip in her EKG before the test, so they monitored her closely. She felt really groggy and dizzy and had some numbness around her mouth, but her pain went down from a 9 to a 6 !! :) Two hours later, on the ride home, her pain went right back up. The doctor told us she would be very tired and sleepy on the way home and she went to bed when we got back. We're waiting to see what today brings. Maybe she will feel better! We wanted to thank everyone for your prayers and support. It means a lot to us !! :-) I'll update again soon. Also, we were glad Kyle was able to go with us. It was a comfort to Kara. He stayed right by her side and only got a bit woozy when they had trouble getting the IV in and had to try again. He said he is so used to using needles with the rats he works with in the Neuroscience Lab at college, but when it comes to his sister...that's a different story.

This is a link about Kyle:

http://www.bw.edu/academics/nro/lab/currentmembers/m4/

Tuesday, March 10, 2009 1:52 PM CDT

We just arrived home from the E.R. Kara's pain was intolerable and there was some kind of different pain she was experiencing in the back of her head for the past two days. I talked to Dr. Frim's nurse and she in turn talked to Dr. Frim and he said that it's time for Kara to make a solid decision about surgery. He said to go ahead with the out-patient Lidocaine Infusion this Friday and if that does not work then Kara may have to try a more lengthy in-patient pain management in the ICU. Please keep Kara in your prayers.

Monday, March 9, 2009 2:29 PM CDT

We just got to watch the interview about Kara dealing with Chiari Malformation. Kara's friend Bailee did an excellent job and deserves a huge "Thank You" for Chiari Awareness! :) There are two new pictures posted from the interview. (It was mentioned at the end of the interview that death could occur from surgery and that part was not mentioned by Kara, nor her neurosurgeon.) Thank you again Bailee you did an incredible job :-)

Email us, if you would like the link.

Thursday, March 5, 2009 7:40 AM CST

There is a change and the interview will air on Monday.

Kara was interviewed by her friend Bailee about Chiari Malformation. Bailee takes a T.V. class at her high school called "Steele News Live". The interview will be shown on our small local cable station "99" and will air tomorrow, Friday at 9:30 am, and then possibly at 3pm, 6pm & 9pm. Thanks to Bailee for coming up with the idea, as this helps with awareness for Chiari Malformation and Related Disorders :-) If you would like to make a tax-deductible donation to help find/fund a cure, you can do so at: www.csfinfo.org, just click on the "Donation Online" button (the link is at the bottom of Kara's page). We may have a link to the interview tomorrow.

Also, please keep Kara in your prayers. She will be having a "Lidocaine Infusion" done next week in Chicago. She is trying this first before deciding on the spinal cord/brain stem dethering surgery.

Wednesday, February 25, 2009 11:16 AM CST

We finally heard back from someone and for sure Kara will have the Lidocaine Infusion on March 13th in Chicago. She will also have an MRI on March 9th in Cleveland.

Monday, February 23, 2009 9:30 AM CST

We had a great time meeting up with the Cavanaugh family:) Kara loved spending time with Brett & Ali and we loved getting caught up with Kellie & Bob.

This weekend was crummy for Kara and she spent most of yesterday in bed. Today she has an appt. with our family doctor who is her pain management doctor. She has an MRI in Cleveland on March 9th and I'm still trying to find out more information about the appt. on March 13th in Chicago. We're still not clear if she is actually going to have a Lidocaine Infusion done, or not. I've called and no one calls me back. Hopefully I will hear from someone soon.

Thursday, February 12, 2009 9:41 PM CST

I feel like I keep repeating myself here, but at times the pain Kara is experiencing is terrible. Nothing seems to change it, or help it. Frustrating to say the least. We scheduled an appt. next month in Chicago with Pain Management to possibly have Kara try a Lidocaine Infusion.

On a good note...we are going to be meeting up with the "Cavanaugh" family soon. Brett Cavanaugh and Kara had surgeries near the same time back in 2004. We have not seen them since 2006, so we are looking forward to seeing them again :)

Tuesday, February 10, 2009 12:35 AM CST

Please keep little Lindsay in your prayers. She was supposed to have shunt surgery yesterday, but some serious problems arose:

www.caringbridge.org/visit/gabehartman

Sunday, February 8, 2009 8:12 AM CST

Since receiving the two injections, Kara has been able to function somewhat better the past two days. She was able to go and visit her brother Kyle at college last night :) We were able to go and visit Kyle earlier in the day and he told us just how much he worries about his sister while he is away.

Still no word on scheduling the MRI yet. Hopefully we will hear something soon.

Thursday, February 5, 2009 3:20 PM CST

We just got home from the Emergency Room. Kara's pain escalated and they gave her two injections. She's resting now. Kara is still struggling with the decision to have the de-tethering surgery.

Friday, January 30, 2009 4:02 PM CST

Kara is still experiencing ups and downs. The pain issues still persist. We are in the process of scheduling another brain and spinal cord MRI, as it has been 6 months since the last one and Dr. Frim wants another one done. Things have been difficult, but I just keep relying on my faith. I rely on it constantly throughout each day :-) We also could not get through any of this without our faithful friends and family!!

Tuesday, January 20, 2009 7:10 AM CST

We emailed Dr. Frim at the end of Dec. when he was on vacation, but our email must have gotten lost. Kara has not emailed him back yet and we're leaving that up to her. Pain issues are still a problem and the doctor has increased the Neurontin to see if that will help. Her other pain meds cannot be increased. She is still functioning and starts her 2nd semster of college today. She had a great birthday or should we say birth..weekend lol. Thanks for all the birthday wishes and all the support and prayers :-)

Thursday, January 8, 2009 11:24 PM CST

Today (Jan. 9th) is Kara's 18th Birthday!!

"HAPPY 18TH BIRTHDAY KARA" :-)

We Love you!! :D

*** Kara still hasn't been feeling too well. Pain continues to be an issue. The local doctor told us again yesterday that he is just putting a "bandaid" on the problem. He really feels that surgery should be strongly considered. We are waiting to hear from Dr. Frim's office. ***

Kara's friends are planning a great birthday weekend for her.....lot's of fun. Also, dinner with the family too. This will hopefully keep her mind off of things :-) We'll be posting some birthday pictures soon.

Sunday, December 28, 2008 10:22 AM CST

Kara ended up in the E.R. again last night. Her pain was at a "9". They gave her a demerol/zofran injection, which is the usual. Hard to believe that a pain patch, high doses of narcotic pain meds, Ibuprofen and neurontin are not controlling her pain. Dr. Frim said we should schedule surgery for Kara. She has been holding off surgery for two years now, since she was diagnosed with the brain stem/spinal cord tethering. Please keep Kara in your prayers. We are praying hard about the surgery decision.

Sunday, December 21, 2008 9:48 AM CST

Kara's pain has just been intolerable lately and yet most of the time she is still functioning. We cannot figure out why it is so bad right now. There is just no rhyme or reason to it. She told me yesterday that she felt like she just could not do this anymore and that it is getting harder to hide her pain.

Tuesday, December 16, 2008 10:02 AM CST

Yesterday Kara woke up and her pain was not tolerable, so we made a trip to the E.R. They gave her a demerol injection, but it didn't seem to help as much as it usually does. She emailed Dr. Frim to let him know that her pain is horrible and not being controlled. He emailed back and said that he cannot do much in way of pain management, however her MRI is abnormal and it is hard to ingnore that when thinking about all the symptoms she is experiencing. Even though Kara has been trying to avoid surgery, she is beginning to contemplate it. All we can do is pray for God's guidance.

Wednesday, December 10, 2008 9:50 AM CST

Kara has an appt. today for pain management again. Her pain is still an issue, but she has successfully completed her first semester of college :-) She finished her finals yesterday. Kyle is doing well and is finishing up his finals this week as well. He went to Washington D.C. last month to attend a National Neuroscience Conference, where he had to give a presentation.

Wednesday, November 26, 2008 9:43 AM CST

The doctor wants Kara to keep trying the pain patch. He says she needs a platform for her pain. She is then to continue on her other pain medication and he is starting her on Neurontin. He was concerned because she is already on the highest dose of her daily pain medication. He feels there is not much he can do and the subject of surgery was brought up :-( The doctor said he is only putting a bandaid on what is wrong. Just like a splinter.....you can put some salve on it, but if you don't get the splinter out, then you are just masking the problem. We explained that Dr. Frim told us that the surgery is something he would do as a last effort, if all else failed, or if Kara was not functioning like she should be. We all just hate to think of another surgery, so please keep Kara in your prayers and all the others who suffer from Chiari and related health issues.

Monday, November 24, 2008 4:28 PM CST

Kara's going back to the pain management doctor (family doctor) tomorrow. The patch is not working and is causing her legs to feel strange and antsy. Not sure there is much else for her to try. She is still taking only one medication, but that does not control her pain properly. She remains busy with college, work and friends. Again, at times she is in bed and at other times she is up and functioning. Most of the time Kara doesn't like for others to know how she feels physically. She does share the complaints and sadness about her pain with her father and I and it breaks our hearts. All we can do is keep praying and keep our faith that the pain will get better:-)

Friday, November 14, 2008 9:10 PM CST

Kara has finally weaned off one of her medications. Unfortunately, the remaining medication is not controlling her pain as well now. She went to see our family doctor (which is her pain management doctor) and he has started her on a pain medication patch. We'll see how that helps. We always continue to pray that one day Kara's pain will completely go away.

Friday, November 7, 2008 3:58 PM CST

With Chiari you learn to ride a daily roller coaster and sometimes it's even an hourly roller coaster. Kara can be functioning fine and then an hour later it's a different story. Last night she had a severe allergic reaction to an over the counter medication and yet she takes that same kind of prescription medication everyday. I talked to the pharmacist today and he said it was probably the dye in the over the counter medication that she had the reaction to. This morning she was doing pretty good and now she is in bed with her head and jaw hurting (she also battles exhaustion). Later, she will probably be up and functioning again. The ups and downs of the Chiari roller coaster I guess.

Sunday, November 2, 2008 9:56 AM CST

Kara had a pretty good week. She remains busy with college, homework, friends and work. She is still weaning down on one of her medications, so far there have not been too many problems. She complained about her headache pain and her shaky hands, but that is the usual. Wish the pain and tremors would completely go away, or at least decrease.

Wednesday, October 22, 2008 1:28 PM CDT

I had a doctors appointment today for pain management and while I was there, my pain really worsened and my heart felt off beat from the dysautanomia. My mom and I rushed home because I began moaning and crying in pain. I then took my medicine and it actually took the edge off, so I'm feeling better as of now. I just get so frustrated to know that nothing ever completely takes away the pain and there is no cure.

On a better note, this past weekend we attended a gala fundraiser. It was an absolute great turn out. It is my 4th gala/fundraiser and usually each year I donate one of my paintings. So I had a print of one of my paintings that went up for live auction and a photograph that went up for the silent auction. It's always so exciting to see people bidding, and the amount of money that gets donated. Each print went for $250, which is a total of $500 donated! It was also so much fun getting to see the Gameron and Kane families again, we just love them so much! Jessica and I were discussing how whenever we go to events where almost everyone has Chiari and SM (and other related disorders) we actually feel normal and not the outsiders. We also have another fundraiser this Thursday and I will be speaking there! :]

-Kara

Monday, October 13, 2008 8:04 PM CDT

Dr. Frim discussed surgical options and at this time Kara has decided to hold off on surgery. She is still thinking things over and trying to process it all. She also wants to finish her first semester of college, which ends in December.

Monday, September 29, 2008 10:13 AM CDT

Kara went to the doctor last week and one of her pain meds has been decreased due to terrible side effects. She is better able to function now. One of the other pain meds has been increased because she is weaning off of the other one. It's ashame she has to wean off of it, but the medication will no longer be affordable once we begin to meet a new deductible. We will be going to see Dr. Frim this week to discuss surgical options. I cannot believe I just typed that. We have been holding off on any surgery for the past 21 months, since she was first diagnosed with the brain stem/spinal cord tethering.

Monday, September 22, 2008 3:35 PM CDT

Frustration !! Kara is having a tough afternoon. The pain meds are just not cutting it and the head pain is bad!! Currently she is laying in bed and I feel like I should be able to help and yet there is nothing I can do!! She will continue to function, because that is what she does somehow....but the appt. with Dr. Frim next week, could not come sooner.

Sunday, September 21, 2008 9:42 AM CDT

Kara is feeling better and the fever is down.

Tuesday, September 16, 2008 9:58 AM CDT

(www.caringbridge.org/visit/julianne)
*** Please read about our 11 year old dear friend Julianne (link below):

http://www.wickedlocal.com/weymouth/homepage

We finally got word on Kara's MRI. She is still tethered at her brain stem and Dr. Frim said that he did not see any forward movement with flexion of her cord. He said we should consider re-exploring the area and untethering the spinal cord from the brain stem. We have an appt. with Dr. Frim on Oct. 2nd. We have been told that the surgery is really risky, and yet she is in turmoil everyday with unrelenting pain and neurological issues, so please pray hard for Kara and the very difficult decision we will have to make.

Friday, September 12, 2008 5:17 PM CDT

Still no word on the MRI yet. Kara's doctor increased her dosage of her medication and the side effects have really increased as well. The first time she took the new dosage she could not drive and yesterday she had to get up and leave her class at college. She tells me that she feels like passing out and that her head hurts worse upon standing (I think that's the dysautonomia with the standing though). I called the doctor and he told me that hopefully the side effects will decrease and if not to give him a call. Of course, as I've stated before, even though Kara has been going through this, she still keeps going and does not let it stop her.

Thursday, September 4, 2008 4:17 PM CDT

**** 7:00 pm Friday - Kara had to go to the E.R. again. Her pain was not being controlled by her medication ****

David emailed Dr. Frim and he told David that he would be looking at Kara's MRIs tomorrow. Kara had a pain management appt. yesterday and the strongest pain med has been increased. The doctor told us that the new dose is a dose that is used to treat cancer patients. Research Funds and Awareness for Chiari Malformation and Realted Disorders needs to be increased !!!

Friday, August 22, 2008 8:37 AM CDT

Still no word on the MRI results, hopefully today we will get them. I had the most Wonderful dream last night and I woke up in tears. I dreamt that Dr. Frim called me with Kara's MRI results and told me that everything looked better and that she even had CSF flow etc. etc. He then said that he did not even recognize that it was Kara's MRI, because everything had improved so much...(what a Great dream) :-) Hoping to get good news :-)

Monday, August 18, 2008 10:51 AM CDT

Kara had a pain management appt. last week and it went well. Our family physician has been handling this for her and her pain meds have been slightly tweaked. As far as Kara's pain goes...it has been quite bad the past few days, but she continues to keep busy with work and today she started college full time :-)

We're hoping to get the results from the MRI's this week.

Saturday, August 9, 2008 11:32 AM CDT

Dr. Frim did get the chance to look at Kara's MRI CD, but out of the Brain, CINE, Flexion/Extension and complete Spinal Cord....the Cleveland Clinic sent ONLY the lumbar spine portion on the CD !! A new CD is being sent out, but Dr. Frim just went out of town for 2 weeks. I guess it is going to take awhile to get the results.

Thursday, August 7, 2008 10:57 AM CDT

Still no word on MRI results. The CD did arrive in Dr. Frim's office, but he has not had the chance to read it yet.

Friday, August 1, 2008 12:32 AM CDT

Kara had a 2 hour MRI this past Monday. I just called the Cleveland Clinic and they have not sent out the MRI CD to Dr. Frim yet. Hopefully it will get sent out next week? We're anxious to get the results. Kara's now complaining that when she paints, or writes both her hands go numb. She is also experiencing extreme electrical pain in her head. It comes and goes.

Saturday, July 26, 2008 7:53 AM CDT

Kara will be having Brain, Spinal Cord, CINE & Flexion/Extension MRI's done this Monday at the Cleveland Clinic and the results will be sent to Dr. Frim. We have already emailed him with so many questions about surgery and he has been very honest and we are praying for guidance. Meanwhile, Kara's headache pain has been so hard to manage and she is on quite a bit of medication. Her POTS and Neurogenic Bladder & Spinal Cord symptoms are really present. But, like I have said before...none of this stops Kara from doing all that she wants and she will always greet you with a big smile :-)

We want to thank our neighbor Bev I. for the most priceless graduation gift for Kara. She made her a beautiful scrapbook with all of the newspaper articles that Kara has been in and all of the pictures from the past 4 years that have been posted on this site with such sweet sayings and notes with each picture. It has chronicled Kara's health journey up to this point in time.

Tuesday, July 22, 2008 8:52 PM CDT

Please pray for Jessica. I heard from her mom and she is in the E.R. again due to out-of-control pain levels. It's just so sad and so unacceptable :-(

www.caringbridge.org/nj/jessica

Sunday, July 13, 2008 10:50 AM CDT

Kara ended up in the E.R. last night at about 2:00 am. Her pain was not being managed with her normal pain medication.
She got a demerol shot and that helped bring her pain down. She is still sleeping this morning. The good thing is that her pain came down, but the downside is that the shot only lasts hours and then the pain goes back up.

Kara is not the only one suffering with pain due to Chiari Malformation. Please check in on our friends: Jessica was recently in the E.R. and Julianne is only 11 years old.....both are in such terrible chronic pain.

www.caringbridge.org/nj/jessica

www.caringbridge.org/visit/julianne

Monday, June 30, 2008 9:35 PM CDT

Thanks for all of the continued thoughts and prayers. Lately, I really need them. It feels as if I cannot get any relief from the pain anymore and it has just been unbearable. One of the worst feelings is being so helpless. To know that there is NOTHING that will help the pain, nothing that will make it go away or even get relief. It almost feels as if I am trapped inside my own body. There is no escape from the ongoing suffering. Even though I am going through this rough time in my life, I somehow am still able to function. I continue to do my artwork, play guitar and work.

This past week I have been getting this awful headache, where it feels like someone is squeezing my brain and stabbing it. My headache was so terrible the entire day yesterday that i started crying and had to get a massage to try and bring the pain level down at least a little bit.(Thank you Traci for taking the time to come over and give me the massage)

I received an email from Dr. Frim recently, stating that it is time to discuss the brain stem tethering surgery. This news really hit me hard and I was very upset because Frim has been trying to hold off on the surgery because it is so risky and rare, so to hear him say we should discuss it, really scares me. I am very nervous and could use a lot of prayer for direction. We have an appointment set up for the beginning of August to discuss the surgery, but we may do a phone conference instead.

--Kara

Saturday, June 14, 2008 7:52 PM CDT

Great News!!

Kara graduated from high school today (one year early) !! She worked very hard to accomplish this and we are so proud of her! :-) She will start college in the fall.

Monday, June 2, 2008 2:22 PM CDT

We just got back from the Autonomic Disorders Clinic. Kara now has "Neurogenic Bladder", among the other dysautonomia symptoms she has been experiencing. It is something that we will watch for now and hope that it does not get worse.

Kara's blood pressure is low and she told the NP about her head pain. The NP suggested two medications. One could possibly help with raising her blood pressure up a little and help some with the headache pain. We will see if these help. She has another appt. in 6 weeks.

Saturday, May 31, 2008 5:00 PM CDT

After Kara got home from the E.R. she feel asleep at 7:30 pm and did not wake up until 9:30 am the next morning. She woke up with stabbing pain in her head. She is still complaining of head and spinal cord pain, but is functioning. She has an appt. in Toledo on Monday at the Autonomic Disorders Clinic, with Dr. Grubb's nurse practioner. Dr. Grubb is on leave, so hopefully his nurse Beverly will be able to give us some advice. Dr. Grubb thought that the dysautonomia (POTS) was playing a part in her headache pain. Maybe she can come up with something that can help.

Tuesday, May 27, 2008 11:27 AM CDT

***update 8:30 pm : We took Kara to the E.R. and they gave her a shot of demerol. She is sleeping now.

Kara is having a rough day today. She is at school and text messaged that her head and spinal cord are hurting and that she seriously feels so sick. She said her head, spine, jaw, ribs and shoulders hurt and she feels nauseous :-( Not a good day. She is staying in school to finish a speech that she needs to give in front of her class and then she'll come home. We're really to the point of not knowing what to do, or where to turn. We've been praying and looking to God for guidance. Any extra prayers would be appreciated.

Tuesday, May 20, 2008 8:40 AM CDT

Kara's pain is still an issue and so are the hand tremors & the dysautonomia symptoms. Her pain has been terrible and she complains about it at home. She really doesn't like others to know and puts on her smile when she is out and about. I've heard others ask how she has been and she answers "fine". She says she just does not want to explain everything anymore. We really feel like there isn't much that can be done for Kara and the doctors don't know what to do either. I noticed that James Carpenter left a beautiful song in Kara's guestbook and it couldn't have come at a better time. The words to the song are so touching. Even though things are hard concerning Kara and it seems like no one knows what to do (including us)...we'll just keep believing and trusting in the Lord, and find strength in Him.

Thursday, May 15, 2008 8:31 AM CDT

Kara did not feel well yesterday evening. She fell asleep very early, but was back up bewteen 2:30 am until 6:00 am because her spinal cord and head were both hurting so bad! She was feeling pretty down about her health and we have been feeling very frustrated as well! We just keep hoping and praying that her pain levels will decrease!

Wednesday, May 14, 2008 10:33 AM CDT

The pain management doctor at the Cleveland Clinic did not feel there was anything he could do for Kara. The only suggestion was to put her in a Chronic Pain Rehabilitation Program. It is a very expensive program and we're not sure our insurance would allow it. The program is 3 weeks long. The teens have to stay "in-house" for one week in a different location. We just feel uncomfortable about that. If she could get into the adult program then she could be dropped off each day from 7:30 am until 4:30 pm. They really do not want her on any meds besides motrin etc. This program consists of biofeedback, stress management, coping skills, etc. I have talked to other Chiari friends who say that they have tried this method and it did not work. We were not sure what to think, because Kara does have structual things wrong (brain stem spinal cord tethering, (which is very painful)...no CSF flow, low lying brain tonsils, hand tremors etc. I guess it is worth the try if she could get into the adult program. Cleveland Clinic is to call us back about insurance issues, but we have not heard back from them yet.

Friday, May 9, 2008 12:15 AM CDT

We took Kara to the new pain management doctor in Cleveland today. The doctor suggested something very different and we are thinking it over (not sure what to think right now). We will update about it later.

Friday, May 2, 2008 8:49 AM CDT

Kara is still not feeling that great, but is hanging in there. She has been busy despite the pain increase. She has never let these disorders stop her from doing all that she can :-) The pain management doctor in Chicago told me that most kids that have the type of pain that Kara has....never leave their home. I do think that when Chiari/SM people do something big they end up paying a price for it a day, or two later, so they have to be careful not to over do it. Hopefully, all will go well with the new pain management doctor on May 9th.

We have a busy weekend ahead, as Kara has several pieces of artwork being displayed in two different locations and we will go and see those tonight and tomorrow. Then we are going to Kyle's college to see him. Tomorrow is the Ovation 2008 Honors Award Ceremony and Kyle will be recognized for his high academic achievement and student life. We do not know the nature of his award yet, but it will be revealed at the ceremony, so we are very excited for Kyle :-) Kara has also been very busy trying to complete a piece of artwork for the Great Lakes Theatre Competition (Christmas Carol is the theme).

I wanted to thank my friend Kris for sending Kara and I the beautiful bracelet and bookmarks!! If you get a chance, stop by Kris' webpage. She is selling these items to raise money to further spinal cord injury research. Kris was diagnosed with Syringomyelia, tethered spinal cord, arachnoiditis and Pseudotumor Cerebri and recently has a new shunt. She is such an awesome person with a strong faith and has really encouraged me lately :-)

www.kscountrycorner.blogspot.com

Tuesday, April 29, 2008 7:30 PM CDT

Kara ended up in the E.R. again. We had to take her because her headache pain was out of control. They gave her a shot of demerol and she is resting now. It's certainly hard not to feel emotionally defeated right now, but I'm thankful for Georgette, who encouraged me today and Michelle G. for making me laugh!! Again, thanks to Linda M. and Jared too :-)

Monday, April 28, 2008 12:10 AM CDT

We heard back from the pain management doctor in Chicago on Friday. She ended up finding Kara a pain management doctor that is closer to where we live, because she felt it was too hard to manage Kara's siutation from so far away. Kara has an appt. at the Cleveland Clinic May 9th to see a new pain management doctor and in the mean time the doctor from Chicago increased her pain medication to give her some relief until her appt. Kara had a great time at Prom :-)

Friday, April 25, 2008 10:06 AM CDT

I received a call from the pain management office that the doctor was going to call me yesterday. She wanted to talk to me about a new drug that might help Kara with her pain, but I was told that the doctor was nervous because of Kara's sensitivity to medications and the fact that we live so far away. I never did receive the call from her, so that was disappointing! I called back today and left a message. It's one of those offices where you can never talk to a human being and can only leave a voicemail.

Kara is still struggling with pain, but is still functioning fine. She's amazing and I don't know how she does it! Tomorrow is prom, so she is looking forward to that :-)

Wednesday, April 23, 2008 8:38 AM CDT

The patches did not help and made Kara feel very, very ill. She woke up yesterday morning and was shaking, nauseated and experiencing weakness and was very pale. She had to remove the patch at that point. She felt so ill that she said she would never try another patch. Our family doctor called and said he had nothing else up his sleeve for her.

Monday, April 21, 2008 4:24 PM CDT

Kara's pain was really bad again today. She said she felt like pulling her hair out, so I took her to our family doctor today. He is trying her on some pain patches. He thinks this might help her pain. We sure hope so!

Saturday, April 19, 2008 8:40 AM CDT

Kara is still having trouble with pain issues. We think her body has become immune to the pain medication she has been taking. She is taking a new one, but not sure if it is working too well. We have not heard back from her pain management office in Chicago yet, but did hear back from Dr. Grubb's office. They think the dysautonomia (pots) is affecting her headache pain too. She has been complaining that her heart feels like it is dropping (tachycardia). They want to see Kara in a few weeks. We wanted to thank Linda Matus for helping us out with information on pain medications (since we didn't hear back from pain management). We really don't know what we would do without her because she has helped us tremendously over the years and so has her husband (Dr. Matus)!! Linda suggested that Kara probably needs to do a "rotation" with pain meds, that way she won't become immune to any certain medication. We also wanted to wish Kyle a Happy 20th Birthday today!!

Thursday, April 17, 2008 8:02 AM CDT

We ended up taking Kara to the E.R. last night. Her normal pain meds were not controlling her pain and she asked us to take her. They gave her a shot of demerol and zofran and that helped lower her pain down to a "6"! We haven't heard her say she has been at a "6" level of pain in a long time!! The medication made her drowsy and she said, "see how happy of a person I am at a lower pain level?" Although, we think she is an amazing person to have to endure the pain levels that she does on a daily basis! Today, she is back in school and taking another test. Hopefully, we will hear back from her pain management doctor's office in Chicago today. We also wanted to thank Jared for coming to the E.R. and comforting Kara. It really helped her a lot.

Tuesday, April 15, 2008 9:14 PM CDT

Although Kara is functioning fine, her pain has been so bad the past few days. She's taken her limit of pain medication today, but will have to take more. Not only is her head hurting, but her spinal cord pain is intense at times. She has been taking long tests this week and has had to look down to do the work and this is pulling on her tethered cord.

Sunday, April 6, 2008 9:08 AM CDT

Kara is still dealing with daily headache & spinal cord pain. So far she is tolerating the new medication, but she has not noticed any improvement yet. She is having some problems with her foot going numb and tingling. This has been going on for a few months, but she has always complained about it while she has had socks, or shoes on. Last week she did not have her socks, or shoes on and she noticed that when her foot went numb, that it also turned a different color and was warmer than her other foot. We let Dr. Grubb's office know and they said it is due to the dysautonomia and is an "autonomic neuropathy" (sort of like diabetics experience). This is due to the brain sending wrong signals to her autonomic nervous system.

The other symptom that is really bothering her lately is her upper spinal cord and sometimes it just burns and hurts so badly. She told us that sometimes she can only remain so calm when the pain is so intense. Despite all of this, Kara's attitude continues to remain positive most of the time and you can ususally find her with a smile on her face! We always pray and hope and have faith that one day Kara's pain will get better :-)

Wednesday, March 19, 2008 9:32 PM CDT

Kara had an appt. in Toledo today with Dr. Grubb at the Autonomic Disorders Clinic. Dr. Grubb is an amazing and compassionate doctor. He officially diagnosed Kara with an autonomic disorder called POTS (Postural Orthostatic Tachycardia Syndrome). He said this condition is a secondary condition for Kara, which is being caused by the brain stem/spinal cord tethering. Dr. Grubb said that Kara is the only patient he has seen that has a tethered spinal cord at the brain stem and not the usual tethered cord at the bottom of the spine. He also noted that she has hypermobility, which we were told that Kyle had as well. We asked him if this was Ehlers Danlos and he said yes. There is definite documentation that Chiari Malformation is related to Ehlers Danlos and there is also a connection to Dysautonomia.

The most surprising thing we found out is that Dr. Grubb felt that the dysautonomia was playing a part in the daily headaches that Kara suffers with. He is starting her on a new medication that he thinks might help a bit with her headache pain and also help maintain her blood pressure. He then wants to see her again in 3-6 months. Dr. Grubb wants to make sure that Kara's symptoms do not get worse, because he felt if they do, that in time, she should consider having the next brain surgery done to repair the tethering.

While we were waiting to see Dr. Grubb we met one of our caringbridge friends Sarina from PA!! Sarina and Kara just happened to have appts. on the same day! It was really good for Kara to visit with her, because she has dysautonomia too. Sarina is such a beautiful and sweet person and we were glad to finally meet her (and her dad)! We also met another very nice person named Debi from Cincinnati, OH.

If you want to learn more about dysautonomia (POTS), just click on the link below under "Links" - www.dynakids.org/what.jsp

Tuesday, February 26, 2008 8:44 AM CST

I think the thing that bothers David and I the most with Kara's new symptoms are the hand tremors. I try not to look at her hands, but know that they are much worse than they were. Others even point it out to us, or Kara will complain about them. Customers point it out to her while she is at work. What troubles us is that she wants to attend college for an art degree. Art is a huge part of who Kara is and what she loves most in life. She loves to paint, sketch, take photographs and all of this involves using her hands. Even though it is so upsetting, we know that God is in control. He is the one we turn to and the one we pray to. There is nothing that surprises Him and we know that He will continue to guide Kara's life, as there is certainly a purpose to all of this :-) If things were always easy in life then we would not learn to rely on God, or step out in faith. He is the one who strengthens us and gets us through each day!

Friday, February 15, 2008 7:22 PM CST

Kara saw Dr. Frim on Thursday. He said that she now has "essential" tremors in her hands. The hand tremors, headaches, balance issues, spinal cord pain, numbness in feet and sometimes legs are definitely due to the Brain Stem/Spinal Cord Tethering and are neurological. She is starting a new medication for headache pain, along with Lidoderm patches for her spinal cord pain. If this does not work then she is to consider returning to Chicago and having the Lidocaine Infusions done by pain management. Dr. Frim told Kara that if the symptoms continue to affect her life and make her life worse, then she may need to consider surgery. He did say that the surgery is serious and is worse than decompression surgery. He also said she would need to have it done during summertime because it would be a long recovery. Kara gave Dr. Frim one of her prints and he loved it. He is always very positive with her :-)

Monday, February 11, 2008 11:26 AM CST

** We will be leaving for Chicago this Wednesday. Kara has appts. on Thursday with Dr. Frim and Dr. Kelly. We will update when we get home. **

It looks like we may be headed to Chicago again soon. Kara is having some progression of neurological symptoms and Dr. Frim wants her to have dual appts. to see him and a neurologist. They will both evaluate her chiari/brainstem tethering. Dr. Frim said that it is often found that tethering of the spinal cord can have progressive symptomatology, unfortunately.

Friday, February 1, 2008 8:33 AM CST

Kara is still struggling with pain issues and other symptoms. She went to the doctor yesterday and a new medication has been started. It's very frustrating because at times it doesn't seem like enough is being done to find a cure for Chiari Malformation. Better treatment options need to be found. A new organization has been formed that is committed to aggressively pursuing a cure for Chiari Malformation & Syringomyelia. We are familiar with, and friends with some of the Board Members & Staff. Kara hopes to be able to donate some of her artwork to this new organization and to continue to donate and support past organizations as well. Please check out their new webpage:

www.csfinfo.org

Friday, January 18, 2008 7:52 AM CST

Kara had terrible head pain last night. It was worse than it normally is. She took her pain medication and went to bed, but could hardly fall asleep. This kind of head pain is what a lot of Chiarians suffer with and Kara deals with this on a daily basis and yet, as a parent, I just cannot get used to watching her go through this.

Wednesday, January 9, 2008 8:40 AM CST

Happy 17th Birthday Kara :-)

Everything went well with the spinal tap. We got excellent news! Kara's pressure was within normal range at "16" compared to her pressure of "21" last June. This is answer to prayer and it's so amazing that Kara's body has adjusted itself to no longer needing a shunt :-) We can now rule out high pressure being a problem. This also lets us know that the tethering at her brain stem and blocked CSF flow are the culprits to her pain issues and minimal neurological changes, (which we do not want to see get worse). Dr. Frim just told us that there is not a surgical solution and that the surgery would presumably help her neurological changes and may also help her pain, but there are no guarantees and the risks are too high. It's definitely not a chance we are willing to take. Our solution right now is to continue to pray.

Wednesday, January 2, 2008 6:54 PM CST

Thank you to the Lakeview Baptist Church "Quilt Ministry" for the beautiful quilts that were made for Kara and Kyle. It is truly a blessing and comfort to know that so many people have committed to praying for both Kara and Kyle.

We feel like we are between a rock and a hard place right now concerning Kara's health. It is too dangerous for her to have surgery for the tethering at her brain stem and yet there are some small changes for her neurologically. She has noticed some minimal balance issues and her hands are shaking a bit more than normal. The headache pain is daily with some spinal cord pain mixed in. This still has not stopped Kara from leading a busy life and doing all that she wants to do :-)

Kara is going to have a spinal tap done in Chicago at the beginning of next week. Kara needs to have this done so that her csf pressure can be checked due to psuedotumor cerebri. Please pray for all to go well for her. Pray for a safe trip, minimal pain, no csf leak and pray against any infection.

We may not update as often, as her health issues seem to remain about the same at this time. If anything changes we will update at that time.

Wednesday, December 19, 2007 8:43 AM CST

We took Kara to a different hospital for her spinal tap than we normally do (due to insurance changes). This hospital is not familiar with Kara and so she did not end up having a spinal tap yesterday. A neuro-radiologist came out and talked to us and he was one of the nicest people we have ever met. He explained that due to Kara's complex medical issues, he did not feel comfortable doing a spinal tap on her. He said it would be too risky and told us of all that could go wrong. Since we pray about everything we took this as a sign it was not meant for Kara to have the procedure done at this time. We did email Dr. Frim and we can take Kara to Chicago to have it done, we're just not sure when at this time. Thanks so much to all of you who check in on Kara and leave such encouraging messages. It is appreciated!

Sunday, December 16, 2007 11:40 AM CST

Kara will be having a spinal tap on Tues. Please pray that all goes well for her.

Monday, December 10, 2007 11:39 AM CST

**** The news on our neighbor Paul is GREAT!! His family called us last night and said that the preliminary tests show that the cancer has not spread to his lymph nodes!! Everyone is thankful for answered prayers!! *****

Please keep our dear neighbor Paul in your prayers. His surgery for stage 2 melanoma is tomorrow.

Kara's spinal tap has been rescheduled for next week. She is just getting over the stomach flu, so her appt. was moved back.

Monday, December 3, 2007 6:14 PM CST

Things are the same for Kara. She still fights the same daily chronic headache and spinal cord pain. So far the medication is not working and the pain management doctor in Chicago has suggested the Lidocaine Infusions. Next week Kara is going to have a spinal tap done locally. She feels her intracranial pressure needs checked and Dr. Frim agreed for her to have it done.

Tuesday, November 20, 2007 7:08 PM CST

*** Please keep our dear neighbor Paul in your prayers. He was diagnosed with stage 2 melanoma and will be having surgery on Monday, Nov. 26th. Pray that all goes well with the surgery and that his lymph nodes have not been affected. Please pray for his healing! ***

We got the results back from Kara's MRI. She still has no CSF flow posteriorly and we know from the last MRI that her brain is back down and crowding at the C-1 level. The tethering at her brain stem is still present and she has stretching of her spinal cord when she flexes and extends her neck. We were told that if her pain cannot be managed medically then she probably needs to consider surgery. Dr. Frim has told us that there would be risks if he operated on her brain stem, so we will avoid surgery for as long as possible. Kara doesn't think the new medication is working very well and she keeps getting nauseated from it, but she's going to keep trying it for now.

Sherri & David

Saturday, November 10, 2007 2:29 PM CST

Kara's appt. with the pain management doctor went really well!!! We arrived in Chicago Friday and got to meet Beth and Gaby (www.carepages.com = failureisnotanoption). He is such a sweet young man and has been through so much!! Beth is wonderful and has a great sense of humor!! It was so good to meet them! Kara had her MRI Friday evening and while we were waiting, Ann drove down to see us (www.caringbridge.org/visit/annbanfield)!! She is an absolute sweetheart and so beautiful!! You would never know to look at her that she suffers terribly from pseudotumor cerebri (high intracranial pressure). It was great to visit with her and share some laughs.

Saturday we met with the pain management doctor. We waited over 2-1/2 hours to see the doctor, but it was worth it!! The doctor is a colleague of Dr. Frim, so that was a big help. She definitely had an understanding of Chiari Malformation and Tethering at the Brain Stem. She said that she was surprised that Kara had only been taking one narcotic pill per day, or sometimes nothing for the day, given her diagnosis of the Brain and Spinal Cord being Tethered together. When Kara described her high headache and spinal cord pain levels as being constant and everyday of her life, the doctor's eyes actually welled up with tears. She was so understanding and compassionate. Kara also shared with the doctor her fears of how others view her because she does have to take pain medications. The doctor then said she would like to see anyone else walk around with the tethered brain stem/spinal cord and all the scar tissue and see what they would do and how they would handle it. As Dr. Frim has told us this is an extremely painful condition. The doctor then prescribed a different medication for Kara to try. She did want us to keep in mind that Kara could come back and try doing a Lidocaine IV drip. They would have to do it in the O.R., or PICU and she could have it done every 4-6 weeks. Kara is going to think this over, as she discussed this the day before with Gaby and his experience with it was not a positive one. So, for now she will try the new medication and see if that helps.

We will update again when we get the results of Kara's MRI.

Thank you for your prayers!!

Sherri & David

Thursday, November 1, 2007 2:53 PM CDT

We will be taking Kara to Chicago next week to see a new pain management doctor. Kara will also have an MRI to re-evaluate her tethering at her brain stem and the chiari. Kara has been complaining of such terrible spinal cord pain now along with her head pain. We do know that her spinal cord is anchored to the brain stem and when she looks down to do anything, her cord is not moving with her when she flexes her neck. It's really sad, but Kara does not let this stop her from doing what she wants to do. She is just finishing up cheerleading, continues to do her artwork, homework and works 3 to 4 days a week at her job.

The last email we received from Dr. Frim was not positive. He told us that he had a conference on Kara last week and concluded that given her poor response to shunting and the risks of operating on her brain stem, that there is nothing more he can do for her surgically. He thinks the brain stem operation would be too risky for her at this point. We're so glad for his honesty and relieved for no surgery, but it is truly hard to hear that we are down to only pain management for Kara and what if that does not help her? Kara read the email from Dr. Frim and told us that she feels so hopeless and helpless. But...we must remember that we have our strong faith in God and He can do anything. After all these years we have not given up our faith and continue to believe that Kara will be healed and will begin to feel better!!

Please keep us in your prayers as we travel to Chicago next week. Pray that all will go well for Kara with the new pain management doctor. Please continue to pray for all the others who suffer from Chiari Malformation and related disorders!!

Sherri & David

Sunday, October 14, 2007 6:51 PM CDT

*** Don't forget to watch Extreme Home Makeover tonight Oct. 21st at 8:00 pm!! The show is featuring the Carter Family. Several members of this family have Chiari Malformation. This will be the first National Attention regarding Chiari Malformation! ***

Thanks so much for praying for our Chiari friends.

Kara emailed Dr. Frim and informed him of her pain levels and that her head and spinal cord have been hurting terribly. He is going to consult with the pain management doctor this Tues. and see what plan they can come up with. We are still heading to Chicago within 3 weeks. Kara has an appt. with the pain management doctor at that time.

Please keep some more of our dear Chiari friends in your prayers. They are struggling with pain issues:

Jessica: www.caringbridge.org/nj/jessica

Julianne: www.caringbridge.org/visit/julianne

Sherri & David

Thursday, October 11, 2007 9:01 AM CDT

Hi,
We have some Chiari friends that are in need of prayer...

www.caringbridge.org/visit/cristina

(Cristina had brain tethering surgery and just made it home to Washington after spending weeks in the hospital. Her mother found her to be unresponsive with a very high fever. Please pray for her.)

www.caringbridge.org/visit/emilycullen

(Emily is a little girl who has been struggling physically and is in the hospital for testing.)

www.caringbridge.org/visit/zipperheadlisa

(Lisa is one of the most precious people that I know. She is always encouraging and uplifting others. She has recently had an increase in her symptoms and could use some prayers.)

Sherri & David

Friday, September 28, 2007 11:21 AM CDT

We are still waiting for an opinion on the tethering at Kara's brain stem. We also made an appt. with a pain management doctor in Chicago. This is a doctor that Dr. Frim has suggested. The appt. is for November 9th. We are not really looking forward to making a trip back to Chicago, but it has been impossible to find a pain management doctor locally and Kara has been suffering with pain levels that are high. She has continued to keep a very busy schedule and continues to keep that smile of hers despite the pain.

Kyle is doing well at college. He is working in the Neuroscience Lab and is enjoying his classes, especially Organic Chemistry:-)

Thanks for your continued prayers and support!

Sherri & David

Tuesday, September 18, 2007 7:35 AM CDT

Kara had a rough "pain" day yesterday and had to take quite a bit of medication to get through it. It just makes us so sad because she gets so sick. Of course you wouldn't know it if you looked at her. She "looks" fine, but doesn't feel fine.

Saturday, September 15, 2007 1:43 PM CDT

The massage therapy once a week is going well for Kara. It is relaxing for her and it does take her pain level from 7-9 down to a 6 for a couple of hours and then the pain goes back up. She has been so busy lately and we wish she would just take some time to relax and rest. When she over does things it tends to make her pain worse and she has been commplaining that her spinal cord is hurting as much as her head pain. We are still waiting for the opinion on her spinal cord/brain stem tethering. Hoping to hear something soon.

Sunday, September 9, 2007 8:33 AM CDT

Kara started massage therapy once a week. We had to have her assessed by the doctor first. He noticed that she has slight scoliosis, which her neurologist found in the spring. This is something new and we should probably get a base line x-ray for it. Another thing that the doctor noticed is that Kara's hands shake. She had a bit of this in one hand over 6-1/2 years ago when she was first diagnosed with Chiari and SM, but it's in both hands now.

Friday, August 31, 2007 7:26 AM CDT

Kara had a rough night. Her pain was really terrible. I could hear her crying from my room. Of course that made me cry. It broke my heart and when I woke up in the middle of the night I had a pit in my stomach. I sometimes wish I could be so much more positive when I post, but the reality of Chiari is physically and sometimes emotionally not that positive to deal with. It is really trying at times, especially when you have been on this journey for 6-1/2 years and nothing seems to get better. The only thing there is to do is take it to the Good Lord and keep the faith that in time the situation will get better.

Tuesday, August 28, 2007 4:44 PM CDT

Kara seems to be having a better week even though her headache pain is still daily. She started school today and really liked it. She only attends her high school for 2 classes, so she is only there just under 2 hours. The rest of her classes are done at home. She cheered at her first football game of the season last Friday and she seemed to physically handle it okay. She has been busy holding down 2 jobs too! We are anxiously awaiting an opinion on the tethering at her brain stem. We have been waiting for weeks, so hopefully we will hear something soon.

We moved Kyle into his college dorm last Friday. He is starting his 2nd year of college and just loves it! He is majoring in "Neuroscience & Chemistry" and has been working in his college Neuroscience Lab since May.

Tuesday, August 21, 2007 2:38 PM CDT

Kara's headaches are still very intense. We're trying to change around her medication and also looking into some other medications that might help. It's frustrating because she has tried so many meds that do not seem to help. We also do not have a pain management doctor.

Kara still keeps up with life and remains busy! The pain does affect her and it gets to her at times, but she is painting, working, cheering and homeschooling through the summer. She's amazing in the fact that she endures intense daily chronic pain, but yet she doesn't let it stop her from doing all that she wants to.

Wednesday, August 15, 2007 8:57 AM CDT

Kara's headaches have been fierce the past few days! Even the narcotic pain med that she takes doesn't seem to work. The heart palpitations and tachycardia continue. It just seems like all of this has taken its toll on her lately and David, Kyle and I feel so bad for her.

Friday, August 10, 2007 6:50 PM CDT

We would like to ask you to pray for two of our dear Chiari Friends, Julianne and Jessica. They have both been struggling lately and so have the people who love them and have to watch them suffer. Please visit their sites:

www.caringbridge.org/visit/julianne

www.caringbridge.org/nj/jessica

Thank you!

Sherri & David

Tuesday, July 31, 2007 11:28 AM CDT

We had to take Kara to the autonomic nervous system doctor yesterday. Her symptoms of heart palpitations, tachycardia, weakness and dizziness continued to get worse and worse. The doctor diagnosed her with "Dysautonomia". She has POTS (Postural Orthostatic Tachycardia Syndrome) and OH (Orthostatic Hypotension - Low Blood Pressure). This is a malfuntion of the autonomic nervous system, which is probably being caused by the tethering Kara has at her brain stem. That is what Dr. Frim has told us, although the doctor yesterday told us that he was not sure if that was the cause. The doctor wants her to start taking salt tablets (sodium chloride), but we will have to check with Dr. Frim on this, because we don't want her intracranial pressure to go higher.

Sherri & David

Wednesday, July 4, 2007 9:31 AM CDT

We heard back from Dr. Frim with Kara's MRI results. Kara's tethering at her brain stem is certainly no better than the last MRI in Jan. It is bad and it is a rare condition and now her spinal cord does not move when she flexes. He said that if Kara's symptoms are worsening then he would presume that the tethering is worsening functionally and that the symptoms will not go away on their own, unfortunately. This is a very painful condition that causes bad head and neck pain, so he wants her to be careful not to do things with too much neck movement, but to go ahead and do what she can tolerate.

Dr. Frim did offer surgery, but it would take most of the day to do. There are also complications to think about with this type of surgery, as there have not been alot performed. Also, there is no guarantee that her symptoms would be alleviated, plus re-tethering can occur again. But, then again, if you have a tethered spinal cord it can become stretched over time and could cause neurological symptoms and for Kara that would be in the upper part of her body since Kara's tethering is aquired and is at the brain stem and not the bottom of her spinal cord.

This is alot to think about and there are some days that it is very hard to deal with, especially for Kara. Like always, we continue to pray and look to the Lord for guidance, comfort and strength. Also, we are very thankful for our friends and family who continue to be there for us and who offer a listening ear. It helps so much to have that support! We deeply appreciate it.

Sherri & David

Thursday, June 28, 2007 2:14 PM CDT

One of our Chiari/SM friends "Megan Reynolds" who was 11 years old passed away Sunday. She had been in the hospital for many, many months. Our hearts are very heavy and sad for her family, please keep them in your prayers:

www.caringbridge.org/visit/meganreynolds

Sherri & David

We will update when we hear back from Dr. Frim about Kara's "Flexion/Extension" MRI.

Sunday, June 24, 2007 7:25 AM CDT

Kara is having a Flexion/Extension MRI in Cleveland today. We will be mailing the CD of the MRI out to Dr. Frim tomorrow and it will probably take a week or two for him to read it. This is the most important MRI, because it will show us the status of the area where her spinal cord is tethered (attached) to her brain stem. We would love for it to look better in that area, so pray that it is. Thank you for your prayers and support! We appreciate it.

Sherri & David

Tuesday, June 19, 2007 10:37 AM CDT

Kara is still doing alot better than last week :-) She did have a bad headache this morning, but she took her medication and is doing a bit better.

Thanks for all the prayers and support!!

Sherri & David

Thursday, June 14, 2007 6:31 PM CDT

Whew.....things certainly got worse before they got better!!
Kara was so sick on the way to get her blood patch and by the time she got there she was vomittng, and she couldn't stand the head pain. She ended up getting the blood patch done and she said it was painful. She had to lay flat for 2 hours before she could come home. She is doing better now :-)
She is laying down because her back is sore, but things are certainly looking like they are going in the right direction. We are very happy about this!!! Thank you all for your prayers. God is answering them!!

Sherri & David

Thursday, June 14, 2007 10:19 AM CDT

Kara is going to have a blood patch done today. Please pray it works and that she will feel better!!

Sherri & David

Wednesday, June 13, 2007 8:49 AM CDT

We need alot of prayer for Kara! She is still not doing well. We ended up at the E.R. yesterday, because her head was hurting her so terribly and her medication was not helping. She could not stand up, or sit up without her head hurting. They thought maybe she has an internal leak from the spinal tap and would need a blood patch. They were going to transfer her by ambulance to University Hospital in Cleveland, but Kara begged not to be taken, plus she started to feel a bit better. We brought her home where she has been laying flat ever since. She cannot get up, or her head hurts very bad. We were hoping today would be better, but she got up this morning and it's the same. She has to keep laying flat. Please pray that her leak will stop and she'll feel better!

We wanted to thank Linda Matus for being with Kara in the E.R. Having you there really comforted Kara:-)

Also, thanks to Zach, Kelsey, Kyle, Daren, Phil, & Mikey for trying to cheer Kara up with ice cream and food and for just sitting with her.

We have to admit that it is very hard right now and has been, but we just keep trusting in God & praying that things will get better!

Sherri & David

Tuesday, June 12, 2007 12:02 AM CDT

Kara is really, really not feeling well. She had the spinal tap yesterday, which revealed that her pressure has went higher since December. It is a bit high, but not overly high, but has climbed up since the last tap. She was then drained down to 10. Dr. Frim is starting her back on Diamox :-(

Kara then tried to have the flexion/extension MRI a few hours after her spinal tap and that did not work out. She was just in too much pain and she felt like her body was jolting involuntarily. They tried about 6 times to do the MRI, but in the end she just could not tolerate it.

The trip home was terrible, because she was in so much pain with her back hurting from the tap and her head hurting
from the spinal fluid being drained. David had to stop to get ice and ask where he could find a drug store. He did find one and he was able to purchase something like a "thera-pak"? It applied heat for 8 hours. When she arrived home she was moaning in pain. This morning she is the same way. We are using heat on her back and ice on her head. We gave her some pain meds and she is alot more calm right now.

We are going to schedule the flexion/extension MRI in Cleveland, so we'll know more about the tethering at Kara's brain stem when those results come back. We are waiting for Dr. Frim to get back with us on the brain/cervical MRI that we sent out to him last week.

I'm sure today will be a much better day.

Sherri & David

Sunday, June 10, 2007 7:17 AM CDT

David will be taking Kara to Chicago today. I cannot go because I just got out of the hospital Wednesday and I am not well enough to go and I'm very upset about it. It just breaks my heart that I will not be able to be there for Kara.

Tomorrow morning Kara will be having a spinal tap in the O.R. about 7:30 am (8:30 Ohio time). She will then have to go to the recovery room and lay flat for 1 to 2 hours. David will be able to talk to Dr. Frim at that time. After she rests, she will then have a Flexion/Extension MRI to check the tethering at her brain stem at 1:30 pm.

Please pray for safe travel and that all will go well for Kara. We're hoping that she will get a normal pressure reading again. We will update once we find out any results.

Thank you for your prayers and support!

Sherri

Friday, June 8, 2007 11:14 AM CDT

Kara has been hanging in there. She is keeping busy, so that is good. I just got out of the hospital and have not been feeling well. I'm hoping to get better before Sunday, since that is the day we leave to take Kara to Chicago. It would break my heart if I could not go. Keep us in your prayers.

Sherri

Monday, June 4, 2007 10:07 AM CDT

Kara had her MRI yesterday morning. We didn't realize until we got home that they did not do the "Flexion/Extension" part of the MRI. That is probably the most important part, since it shows what is going on with the tethering she has at her bain stem. We're checking into this to see what we can do. Next week she will have the spinal tap done.

Kara's pain got so out of control yesterday that she was hitting herself in her head and asking us to "just put her in a coma". We got another medication called in and gave it to her. She calmed down after awhile, but it still did not take the pain completely away. It did bring the pain down to a "6", but only for about an hour (that hour made us happy though). Kara's good friend came over later and took her for a ride to get her out of the house and we know that helped alot.

Saturday, June 2, 2007 8:03 AM CDT

Kara will be having her flexion/extension brain/cervical MRI done tomorrow in Cleveland. We're going to mail it out to Dr. Frim on Monday. She will then have a spinal tap done in the O.R. in Chicago next week. We'll be able to speak to Dr. Frim after she is done with the procedure.

Thank you so much for your prayers, as that means more to us than anything!

Thursday, May 31, 2007 7:33 AM CDT

Kara has been doing just terrible. Her pain gets out of control at times. The new medication did not work, so the doctor told Kara to stop taking it. We are trying to give her more of her other medication to try and stay ahead of the pain. Because of this, Kara will be having an MRI this Sunday in Cleveland at University Hospital. They are going to do a flexion/extension, brain and cervical MRI.

We are also going to take Kara to Chicago for a spinal tap in the O.R. We are trying to arrange the date for that. We did get a date of June 5th, but it has not been confirmed yet.

We know Kara usually smiles, but behind closed doors there have been alot of tears, frustration and anguish. We honestly don't know how she does it. We're very grateful for the friends that continue to be there for her and who remain loving, supportive and compassionate and not insensitive.

We are asking for your prayers for Kara. Pray that her pain will decrease!

Tuesday, May 29, 2007 9:25 AM CDT

Please check out little Gabe's caringbridge page. He is 5 years old and suffers terribly from the pain of Chiari. He has an upcoming surgery with Dr. Frim. Please keep him in your prayers:

www.caringbridge.org/visit/gabehartman

Kara stayed very busy this weekend. She had fun spending time with her friends. I think that helps to keep her mind off of things.

This morning Kara was not feeling well. In fact everyday she complains to me privately and it breaks my heart. Today she told me that her head hurt and so did her neck and her body just feels worn out. Her spinal cord hurts when she bends her head forward too. The new medication does not seem to be working at all, so I put a call into the doctor and will see what she has to say.

Kara emailed Dr. Frim and he still wants her to keep trying different medications until there are not anymore to try. He only suggests surgery as a last option. Kara asked him if it was a possibility that her pressure may be high again. He suggested that she may need to have a spinal tap. The last time she had her pressure checked was about 6 months ago and that's when she went off of the diamox. We may have to check into having one done again.

Everyday we just keep praying that her pain will decrease. I want to thank everyone who continues to pray for her and everyone who checks in on her:-)

Wednesday, May 23, 2007 8:19 AM CDT

Kara's head pain seems worse lately. If there could even be a worse? Here is a text message that she sent to me recently:
"I just stood up and it felt like I got hit in the head with a hammer and my head feels bruised."

Kara feels so frustrated right now and so do we. We are still going to give the new medication a few more weeks.

Sherri & David

Sunday, May 20, 2007 10:09 AM CDT

Kara is having severe insomnia and nausea from the new medication. One night she didn't go to sleep until 4:30 am and had to get up for school. We cut the dose in half for now and we will talk to the doctor on Tuesday.

She had a pretty good day yesterday and was out having fun, but last night she was over someone's house and her headache pain got so bad that she could not drive home:( So sad:( Hoping for a better day today!

Wednesday, May 16, 2007 5:12 PM CDT

Kara had bad head pain today. Maybe it's the weather? I know alot of "chiarians" have an increase in pain when a cold front comes through, or it's rainy/gloomy outside. The pain still did not stop her from attending school, doing her homeschool work, or going to her job, so that's good. She's pretty amazing like that:)

Saturday, May 12, 2007 7:53 AM CDT

Kara is hanging in there. She has a head cold right now which is making her head hurt worse than normal and this morning she woke up with a nose bleed. The new medication doesn't seem to be working yet, but that is to be expected. It may not help for a few weeks. We are still hopeful that it will help:)

Wednesday, May 9, 2007 7:28 AM CDT

This past weekend I had a bad headache that lasted for 3 days straight. All I could think of was, "How does Kara do this"? I knew in time it would go away and Advil did help some, but I don't know how my daughter lives with a headache everyday, I really don't. Plus, she has to deal with the fact that it doesn't go away for her and there doesn't seem to be a medication that helps so far. How frustrated she must feel. I also felt grouchy, and angry and I didn't feel like doing anything. I didn't even feel like driving, or going anywhere.

I'm proud of Kara, as she doesn't let this chronic pain stop her from doing what she wants to do. She just keeps going. There are times it tries to stop her in her path, no doubt, and those are the times I hate to see, but for the most part she tries to keep positive. Once again, I don't know how she does it!!

Kara had another doctor appointment yesterday and today she will try a new medication. It might take a few weeks before she will notice any difference, but we're once again hopeful that this will help decrease her headache pain. Please pray that it does.

Sherri

Saturday, May 5, 2007 1:11 PM CDT

Kara already had to discontinue the new medication. It was causing her blood pressure to drop too low. We called the doctor to let him know what her blood pressure had been and they told us to take her off of it immediately. We are still hoping there will be a medication that will help with her pain levels, we just haven't come across it yet.

Thursday, May 3, 2007 7:17 AM CDT

Whew....Kara had a terrible night last night. Her headache pain was awful and she felt so nauseous. She was crying and we felt so bad for her. She did start the new medication which is a beta blocker. It seemed like it made her feel worse, but it's probably too early to tell. Hopefully today will be a better day.

Sunday, April 29, 2007 9:02 PM CDT

Kara has kept busy this weekend. She is still having terrible headache pain and at times, trouble with her heart racing and some dizziness upon standing. Dr. Frim thinks this is from the tethering at her brain stem. Hopefully we will find a medication to help with the headache pain. We will try everything we can, so that Kara can avoid another major surgery (Dr. Frim agrees). Please keep Kara in your prayers and everyone else who suffers from Chiari Malformation/SM, PTC and related disorders.

Sherri & David

Thursday, April 26, 2007 10:09 AM CDT

Kara made it through the tilt table test fine, but she said it was one of the most grueling tests she has been through. The test results came back negative:) The doctor did notice from the test that she is having problems with low blood pressure and that she will need to stay hydrated. The doctor wants her on a beta blocker because he thinks it will help with her headache pain and help with the tachycardia she has been experiencing. The only problem is that beta blockers can cause low blood pressure and Kara is already having problems with it being low, so we will have to be very careful to monitor her blood pressure everyday. We haven't started the medication yet, so we will see how it goes.

I did talk to Linda at the National Dysautonomia Research Foundation and I have been taking Kara's blood pressure and pulse each day before she gets up in the morning and then sitting and standing and a few minutes after. Linda asked me what numbers I had on that and when I gave her the numbers she said that Kara does have dysautonomia and that I should not ignore it and to let the doctor know about the journal I have been keeping at home. Not sure what to think about all of this, as the doctor told us that the "tilt table" test is accurate.

We emailed Dr. Frim about all of this information and he said that the low blood pressure and pulse problems are due to the tethering at Kara's brain stem. He does want us to try any non-surgical way to address Kara's complaints, so that we can try and hold off on surgery.

Thank you so much for your prayers! We do believe that prayer changes things:) I wanted to thank Diana and Lisa and Lisa from N.C. for all their help...you guys have been great!!

Diana - www.caringbridge.org/tx/diana

Lisa - www.caringbridge.org/visit/thejourney

Lisa - www.caringbridge.org/visit/zipperheadlisa

Sherri & David

Monday, April 23, 2007 3:57 PM CDT

Kara had her doctor appt. today with Dr. Alshekhlee. He took down all of her medical history. We had to go over everything in the past 6 years, so it took us awhile. He did find that when Kara went from sitting to standing that her pulse went up high. He also noticed some tachycardia too. So, along with Dr. Scher's findings from two weeks ago, they scheduled her to have Autonomic Testing done to check for dysautonomia. She will have a "tilt table" test done tomorrow. We will share the results when we find out what they are.

Please check on our friend Ann if you get the chance. She explains what it's like to live with a chronic illness (Pseudotumor Cerebri). She has a shunt and goes through so much!! She is a sweetheart:)
www.caringbridge.org/visit/annbanfield

Sherri & David

Thursday, April 19, 2007 8:20 AM CDT

Happy 19th Birthday Kyle!! Kyle is doing well and still does not have any chiari symptoms, which is wonderful! He is busy finishing up his freshmen year in college, where he is double majoring (Neuroscience and Chemistry).

Kara is doing okay. Dr. Frim told us that her brain stem is probably malfunctioning a bit either from the tethering, or from progression of the chiari syndrome and that is what could be causing her blood pressure/pulse (heart) problems. The messages between the brain and heart get confused, so the heart responds inappropriately. Dr. Frim feels that if these symptoms progress then she will probably need to have anther major brain surgery. We were really hoping to hold off on this. Kara has an appt. to see a specialist for the autonomic nervous system on Monday the 23rd. We will wait and see what he has to say about everything. We are praying hard that maybe what she is experiencing is only transient and not dysautonomia. All of this has not stopped Kara from doing all that she wants to do. She continues to remain active and busy, although her pain levels sometimes get worse than they already are and it's sad to see her like that.

I know that when I post I tend to just state the facts, but emotionally, this is very hard on us. It's hard to watch your child struggle and go through so much for so many years, or to think that things are going alright, only to hear that something else could be wrong. It's hard too, because Kara looks fine to others, she doesn't look like she has a chronic illness. We could not get through any of this without our faith in God. So glad that He is here for us:) Also, we are not the only ones going through this, there are others who share our journey....like the Gamerons, Pozniks, Verchers, Kanes, Morgans and many, many others. We don't know what we would do without all of you! We certainly need a cure for Chiari Malformation and all that it causes!!

Sherri & David

Tuesday, April 10, 2007 4:13 PM CDT

Kara's appt. with the neurologist went well, but we found out that she has more going on with her health.

First of all the doctors found that her right leg does not have the same strength, or reflexes that her left leg has. The doctors also found that Kara has orthostatic changes (changes with blood pressure and pulse...when going from laying to sitting to standing). They think she might have "dysautonomia" and we will have to see another doctor to get an evaluation done. The doctors think this is definitely caused by her "Chiari", and possibly the tethering at her brain stem. Kara has been complaining of heart trouble and feeling like she could pass out, or feeling like blacking out and diziness since about January. We emailed Dr. Frim and will see what he has to say.
Please keep Kara in your prayers and all the others who suffer from Chiari/SM and related disorders!!

Sherri & David

Monday, April 9, 2007 3:00 PM CDT

Tomorrow Kara has an appt. to see her neurologist. Hopefully he will have some idea on what medication might help her. Kara has only seen him one other time, so we will see.

Grandma is out of ICU and has started P.T. in the hospital. The subdural hematoma seems to have affected her speech and she struggles in some other areas. We are amazed that she came through both emergency surgeries. Thank you for your prayers.

Sherri & David

Wednesday, April 4, 2007 10:51 AM CDT

Today I am asking for prayers for my grandmother (Kyle and Kara's great grandmother). She is 86 years old. At the end of February she fell and was taken to the hospital. She had a small subdural hematoma. She remained at the hospital for almost 3 weeks. She then went home for two weeks. This past weekend she was not acting normal, so 911 was called. On saturday she had a CT scan in the E.R. The subdural hematoma was very, very large and putting pressure on her brain. She had an emergency surgery to have a Jackson-Pratt drain put in. I was familiar with this drain because Kara has had one more than once. Over the weekend she began to deteriorate and yesterday morning she had to have another emergency brain surgery (craniotomy), where part of her skull had to be removed because there was alot of swelling in her brain and her brain was pushed to the right. She made it through the surgery and is now in ICU. It has been very hard on all of our family to watch her go through this difficult situation, so please keep her in your prayers.

Sherri

Friday, March 30, 2007 3:45 PM CDT

It's been a rough week for Kara in terms of pain. She's had a few days that have been awful and worse than normal. I called Dr. Scher's (neurologist) office and they made an appt. for April 10th. Kara is starting on a new medication, so we will see if it helps, or not.

Sherri & David

Sunday, March 18, 2007 10:42 AM CDT

Well, I got more news. Besides the tethering at the brain stem, my cerebellar tonsils are crowding and narrowing the chiari area. I have no CSF flow again in the back and the sides of my brain. Also, there is buckling of my graft when i tilt my head back. My head is still constantly hurting and it is very hard to get through each day with it. Alright, keep praying for me and the others that suffer with this condition! Kara :)

Thursday, March 8, 2007 8:55 AM CST

Not too much has changed since the last update. Kara still has alot of headache pain and the medication that she was on was not working. We are still dealing with the fact that her spinal cord is tethered to her brain stem. We are trying to find out as much information on that as we can. It is something that is uncommon and the info that we have been given is not too positive as far as surgical intervention. So, for now we pray about it and ask for God's guidance. Thank you for checking in on Kara and for your prayers too:) We appreciate it!

Sherri & David

Friday, February 2, 2007 9:05 AM CST

Dr. Frim emailed us and called us with Kara's MRI results and they were not the results that we wanted. In fact, they were not anything that we were even thinking could be wrong. Kara has tethering at the brain stem causing her the head pain and symptoms that she has been experiencing. Dr. Frim said that this can be very painful to have, so they want it treated with pain medication and if the pain cannot be managed medically, then they recommend surgery. Tethering means that Kara's spinal cord is attached to her brain stem and it should not be attached. She has alot of scar tissue as well. Dr. Frim says that this was caused from many surgeries at the Chiari site, as well as going into the dura (lining of the brain) and infection. He mentioned the infection that Kara had last year and said that it probably contributed to the situation.

We also asked Dr. Frim if this can get worse for Kara and he said that when a cord is tethered, it can become stretched and this could cause Kara balance issues and sensory issues in her neck, arms and shoulders over time. This has been very hard news to digest and it has been upsetting for our family, but especially to Kara. We don't even want to think about her enduring another major brain surgery.

Even though all of this is hard to hear, we continue to keep our faith in God and know that it is in His hands. We trust in Him and know that in time things will get better for Kara and that she will have a complete healing.

We are asking you to keep Kara in your prayers and all of the others who suffer from Chiari/SM/PTC and related disorders!! We really do need to find a cure, so if you are interested in purchasing a print from Kara please click on her art site above, or go to: www.karasart.com

Thank you for your prayers and support!

Sherri & David

Wednesday, January 17, 2007 9:36 AM CST

Kara will be having her MRI's done in Cleveland, so that means that we will not have to travel to Chicago right now. She is scheduled to have a Flexion/Extension Cervical MRI and a CINE MRI done this Saturday, Jan. 20th. The films will then be sent to Dr. Frim, so that he can look them over and then give us the results.

Kara also has an appt. to see Dr. Ellis (pediatric opthalmologist) for a field vision test next week. Dr. Frim wanted this test done due to Kara having PTC.

Sherri & David

Tuesday, January 9, 2007 6:36 AM CST

*** Please keep Jessica Gameron in your prayers!! She just had tethered cord surgery yesterday in New York. Everyone is hoping that this surgery will help to relieve the daily pain that Jessica feels *** www.caringbridge.org/nj/jessica

Today is Kara's 16th Birthday!! We had a surprise birthday party for her on Sunday and surpised her with a car too:)(thanks to Uncle Tom for all his help)!! Last year on this day she was headed into surgery and then the PICU, so we wanted to make this birthday a whole lot better and we did! She was very happy!

On the health front, Kara is still having daily headache pain and the same symptoms when she tilts her head back to look up. Looks like she will have to have the Flexion and Extension MRI done. We're checking with Dr. Frim to see if she needs any other MRI's done, so that she can have them done at the same time.

Kyle returned to college for the 2nd semester and seems to be over the mono now and feeling better. He made the Dean's List for the 1st semester and we're very proud of him!!

Sherri & David

Monday, January 1, 2007 4:46 PM CST

We had a much better New Year's Eve last night compared to last year which was spent with Kara in the PICU. Anything beats that:) Kara has still been struggling with headache pain. It seems the more that she does the more she has to "Pay to Play". She had a terrible time yesterday afternoon and her pain seemed to get a bit out of control. She has also been experiencing some new symptoms. Whenever she tilts her head back to look up she gets intense pressure behind her eyes and she feels like she is going to black out and has even seen stars. We emailed Dr. Frim about her headache pain and the new symptoms. We asked if Kara's pressure could increase with only being off of Diamox for 10 days and Dr. Frim said that it could, although Kara's pressure had been low, it is a possibility. He also wants Kara to have a Flexion and Extension MRI done to check out why she is having the new symptoms. We haven't emailed Dr. Frim back about that because we are not sure if we should/could have the MRI done here, or if we should have it done in Chicago.

Sherri & David

Monday, December 18, 2006 3:13 PM CST

Kara had a terrible night last night. Her headache pain was bad and so was her rib pain. She was up in the middle of the night too.

Today has been a better day for her. She has been trying massage therapy once a week, (thanks to Jenny for thinking of it) and Tracey who has been doing the therapy for Kara. It has helped reduce Kara's pain levels for a few hours. Usually Kara is at a 7-9 pain level each day, but after the massage she goes down to a "6" for a couple of hours, so at least she is getting some relief:} We just wish it could last longer and maybe it will in time!

We did hear back from Kara's doctor and he wants her to decrease the Diamox and then go completely off of it in a week, or two. We're praying that her pressure will remain normal.

Sherri & David

Thursday, December 14, 2006 11:16 AM CST

Everything went well for Kara yesterday. Thank you so much for all your prayers!! The tap was a bit painful, but she did good. We also received more answer to prayer as her pressure is down to "13" (and this is without a shunt)!! Her pressure had been "26" in July and then "16" in October and now a "13", so the Diamox has definitely been working. We have not talked to the doctor yet on whether, or not we can decrease the Diamox. We certainly don't want to decrease it and have her pressure go back up, so we will wait and see what the doctor has to say. Unfortunately, Kara still has daily headache pain, so we are still praying about that!

Please keep Kyle in your prayers, as he was just diagnosed with Mono yesterday after finishing up his last finals at college. He is now home and resting.

Sherri & David

Saturday, December 9, 2006 8:09 AM CST

Kara will be having a spinal tap done this coming Wednesday, December 13th in Cleveland. She has decided not to have sedation, or anesthesia. Please pray for her because she gets very, very nervous before having this procedure done. Also pray against any infection and that we will get good news and that her pressure will again be normal.

We have been in contact with Dr. Frim and he agrees that Kara needs to have the tap done because Pseudotumor Cerebri (Intracranial Hypertension) needs to be monitored about every 3 months and the only way to check this condition is to have a tap done.....(we really need to come up with a non-invasive way of checking pressure in the brain). The doctors also want to find out Kara's pressure because she has been taking Diamox for 6 months now and it is hard on the kidneys and causes fatigue and if her pressure is normal again, then she can cut down on it.

If you would like to know more about Pseudotumor Cerebri (Intrcranial Hypertension), you can click on the link below at the bottom of this page, where it says "Links". There is a very good website - www.ihrfoundation.org.

We would also like to thank everyone who has ordered a print from Kara's art site! We appreciate it and so does everyone who suffers from Chiari, SM and PTC!!

Sherri & David

Monday, December 4, 2006 8:34 PM CST

Kara is now off of Keppra, but she hasn't started the new anti-seizure drug yet. She really just wants to take a break for a week, or two. She is still taking Diamox everyday.

We are still trying to decide if Kara should have a spinal tap done in Cleveland, or if she should have it done in Chicago with Dr. Frim. We are still looking into it and I was on the phone with a doctor from Cleveland today and I am awaiting a call from their anesthesia dept. tomorrow. They do have Kara set up for an appt. on Dec. 13th, but they are unsure if she should be sedated with their sedation machine, or if she should be put under anesthesia. We just want to make sure they do it safely. We had originally had an appt. for Kara to have a tap done in Chicago on Dec. 26th, so we are checking to see if we still have that appt., or not.

Sherri & David

Friday, November 24, 2006 2:07 PM CST

Please keep our friends Matt and Jessica in your prayers. Matt had a shunt infection and is having complications from infection. Jessica is headed back to see her neurosurgeons on Monday due to intense daily head pain.

Matt: - www.carepages.com fayettefootball70

Jessica: - www.caringbridge.org/nj/jessica

Kara had an appt. with a new neurologist this past Tues. The doctor was honest and told us that there is no easy fix for Kara and what is causing her pain. Her case is complicated and a number of things are going on with her.

First of all, the lining of her brain has been cut into 7 times in the back and he thinks the meninges is damaged and it has messed up the pain receptors. Also he feels that the muscles at the back of her head have been cut into so much and pulled back together so much that part of her pain could be muscle related. This is not counting all her shunt surgeries. The doctor is taking her off of Keppra and starting her on a new anti-seizure medication. He also thinks she may benefit from biofeedback and possibly injections in the muscles (but they need to check with pain management about that). The doctor also found that she has slight scoliosis as well.

The doctor also wants her to have another spinal tap within the next month to check her pressure due to pseudotumor cerebri (high intracranial pressure). Her pressure was normal at the beginning of October and Kara has continued to take Diamox since then and he's not sure she needs to take as much now. The doctor wants Kara to have the tap done in Cleveland, so that we will be closer to home. Kara's not too sure about this, as she is so used to Dr. Frim and his team. Please keep Kara in your prayers, as all of this gets overwhelming at times.

Thanks so much for your prayers and support. We appreciate it!

Sherri & David

Monday, November 20, 2006 8:57 AM CST

Kara is still struggling with painful daily headaches. It is so hard not to get discouraged, so we're hoping that her appt. with the new neurologist tomorrow will shed some light on something that can help her.

Sherri & David

Tuesday, November 14, 2006 9:23 AM CST

*** Don't forget to check out Kara's artwork at www.karasart.com, or click on the link above "Kara's Paintings". If you would like to purchase a print the money will go towards research to help find a cure for Chiari Malformation, Syringomyelia & Related Disorders. ***

We had a wonderful visit with the Gameron Family and Cathy & Calvin Poznik!! We were so happy to see them and so happy to spend time with them all:) It was a much needed visit and we were so glad that the Gameron's took the time to drive all the way from New Jersey to see us.

Kara is having a hard time with her pain levels right now. We are so frustrated and it's hard not to get discouraged, but we have to keep our faith in God and believe that things will get better for Kara. She has been missing quite a bit of school, so we are going to have an IEP meeting at the school this Thursday morning to see if we can modify her school day and make it a shorter day for her. Kara also has an appt. with a neurologist next week on Nov. 21st. We really don't know anything about this doctor, we only got his name and made an appt. after getting passed around from doctor to doctor over the phone, so pray that all goes well with the appt. and pray for Kara's pain levels to drop. Also, please keep all the others who suffer from chronic pain due to Chiari Malformation, SM and PTC in your prayers.

Sherri & David

Friday, November 10, 2006 6:58 AM CST

Please keep our friends Matt and Gaby in your prayers. Gaby is in the hospital and has a pseudomeningocele (CSF Leak). Matt and his family are headed back to Chicago. He has had multiple shunt surgeries and there is a possibility that his shunt is not working again. Their webpages are:

For Gaby: www.carepages.com - Failureisnotanoption

For Matt: www.carepages.com - FayetteFootball70

We have great news......The Gameron Family from New Jersey are coming to visit us today and they should be here this afternoon!!! Jessica has the same diagnosis as Kara and they had surgery in New York on the same day back in 2002. Needless to say Michelle and Al helped us through a few horrible days with Kara. We are so looking forward to seeing them:) We feel like we have another family who can completely relate to what we are going through with Kara. It will be good for Kara and Jessica to get together too. We are also looking forward to seeing the Poznik family from Twinsburg, Ohio who will join us all on Saturday:) Their webpages are:

www.caringbridge.org/nj/jessica

www.caringbridge.org/oh/calvin

Kara is still struggling with headache pain. She is home from school again this morning. It's very frustrating. We are still trying to be hopeful that the Keppra will work. We know of a few people that is has helped and one said that it took at least 5 weeks to work. We'll update again soon with new pictures too.

Sherri & David

Friday, November 3, 2006 7:00 AM CST

*** Kara's art webpage is now up and running again thanks to Jordan and Kane for working so hard on it, we appreciate all they have done. If you are interested in ordering a print, a portion of the proceeds will go towards research and finding a cure for Chiari Malformation and Syringomyelia! Just click on "Kara's Paintings" above. ***

Kara is home from school again this morning. She seems to be missing about 2 days a week due to headache pain. We called Dr. Reed, (the other doctor that we were referred to by the pain management doctor). Dr. Reed's office informed us that they do not take 15-16 year olds, they only see adults, 18 years old and up. They then referred us to another doctor which we called and they only see autistic children, so they then gave us the name of another doctor. We called that doctor (Dr. Scher, neurologist) and we have an appt. for Kara on Nov. 14th. For the time being, Dr. Frim called in a new medication for Kara called Keppra. She is now off of Topamax and has started Keppra. We are glad she is not on Topamax anymore. She reacts horribly to that medication. Please keep Kara and all the other children and adults who suffer from Chiari and SM in your prayers.

Sherri & David

Wednesday, October 25, 2006 1:07 PM CDT

Please keep some of our Chiari friends in your prayers**:

**Kellie and Kate Vercher will be having surgery next week.
www.caringbridge.org/la/kasiekelliekate
The Vercher family is now selling paper cranes to raise money for Chiari Malformation. They hope to raise enough money to open a camp for kids who suffer from Chiari and related disorders. Their new webpage is:
www.miraclewishforchiari.com

**Calvin Poznik is having a terrible time with headache pain and has not attended school in the past 3 weeks.
www.caringbridge.org/oh/calvinp

**Our friend Ann, who has been so helpful to us, has had to make some tough decisions in her life.
www.caringbridge.org/visit/annbanfield

Kara has been home from school the past 2-1/2 days due to bad headache pain. She is also experiencing terrible side effects from the Topamax, and she does not want to continue to take it. We called her new pain management doctor about this and they are already passing her off to another doctor that we know nothing about. This doctor is also located quite a bit away from us. We called Dr. Frim and he is going to call in a new medication for Kara to try until we can find another pain management doctor for her.

Sherri & David

Sunday, October 22, 2006 9:44 PM CDT

Kara is still trying Topamax. We have noticed a few side effects, so we dropped her down to one pill per day, instead of two. This evening her headache pain was bad, so she took her second Topamax for the day. We're not sure that she can just stay on one pill per day and yet we don't like the side effects when she takes two.

We are still thanking God that Kara is able to live "shunt free" and that the Diamox is keeping the pressure in her brain at a normal level. God has been so good and it's just so awesome to see Him answer our prayers for Kara, and these are prayers that all of us have been praying for the past 5-6 years....How great is that?!! Of course, we are still in need of prayers for Kara's headache pain to decrease and be taken away completely.

We wanted to say a big "Thank You" to all of you from Atco, New Jersey, for taking the time to send Kara such encouraging cards and gifts. She appreciated it so much!!
We know you are all friends of the "Gameron Family", whom we love dearly and who are coming to visit us soon:)

(www.caringbridge.org/nj/jessica)

Thanks to everyone for your prayers and support!

Sherri & David

Thursday, October 12, 2006 1:15 PM CDT

Kara's appt. with the pain management doctor went really well. The doctor and his resident were very nice. They are starting Kara on Topamax, which is an anti-seizure drug. She has tried it before, but we are willing to try it again. Our only concern is that she is on Diamox, which can cause kidney stones and Topamax can cause kidney stones as well, so Kara is going to have to make sure that she drinks lots of water!! They also ordered Kara a TENS Unit, so that should be arriving in the mail on Monday.

It will probably take a few weeks for Kara to notice any difference with the Topamax. They are starting her on a low dose and then increasing it every few days. Hopefully she won't have the same side effects on it that she did before. Thanks for checking on Kara and for your prayers and support. We appreciate it.

Sherri & David

Tuesday, October 10, 2006 8:59 PM CDT

We found a pain management doctor for Kara. Her appt. is tomorrow, Wed. Oct. 11th at 3:00 pm. We are really hoping that this doctor will be able to help Kara with her head pain. We are also hoping that this doctor will have at least some knowledge of Chiari/SM and PTC, so please keep Kara in your prayers. We are still so happy and thanking God that Kara is able to live without a shunt and that her pressure is normal and is being controlled by Diamox! Now we just need her pain levels to decrease.

Sherri & David

Wednesday, October 4, 2006 3:12 PM CDT

**new pictures**

Hey everybody. I made it home from the hospital! I had the spinal tap yesterday and got some pretty good news. Last time I had my pressure checked (which was july 17) it was 26 and from the tap yesterday they found it is 16..yay! None of us could believe that it is about normal now when it had been so high. This is definetly an answer to our prayers and we're thanking God big time. Dr.Frim said the medication diamox that I am on is controlling the pseudotumor cerebri so my pressure is normal now and he wants me to continue to take it. I was just so surprised because I thought for sure it was going to be high and even Dr.Frim thought it would be too.

Dr.Frim wants us to try and find someone close to home to help control my head pain. Im still having terrible head pain every single day, so hopefully we'll find someone soon. Thanks everyone for keeping me in your thoughts and prayers!:)

Kara

Sunday, September 24, 2006 10:56 AM CDT

Kara is still struggling with pain issues. We will be heading back to Chicago next week (Oct. 3rd) for Kara to have a spinal tap in the O.R. Dr. Frim wants to check her pressure and drain some fluid. We have been praying so hard for Kara and that her head pain will decrease. It has been a blessing that she has been living without a shunt so far and we're hoping that when her pressure is checked next week that it is not too high, so that she will not have to have an LP shunt put back in. Kara has continued to take Diamox to help her brain produce less fluid. She has also been taking Depakote, but that has been causing her some unpleasant side effects, so we are going to stop that medication.

Please keep Kara in your prayers and all who suffer from Chiari Malformation, SM and PTC.

Sherri & David

Friday, September 15, 2006 10:03 AM CDT

It's been a rough week for Kara. Her headache pain has increased some and she had to come home from school early two days this week. She also missed the first football game yesterday and could not cheer. The weather has been rainy and cooler, so we're not sure if that is bothering her. Also, she is always a bit worse when she is at school due to the lighting, noise and concentrating. She seems to feel better after she is able to get some rest, (which is hard for Kara). Please keep Kara in your prayers and all of the other kids, teens and adults who suffer from Chiari, SM and PTC (pseudotumor cerebri).

Sherri & David

Tuesday, September 5, 2006 6:46 AM CDT

School seems to be going well for Kyle and Kara. Kyle is adjusting well to college life. Whenever Kara is in school she tends to have an increase in her headache pain. It's probably a combination of the lighting, noise and concentrating on schoolwork. She also has a bit of a cold right now, so that's making her head feel worse as well. Hopefully she'll be feeling better soon.

Sherri & David

Tuesday, August 29, 2006 9:25 AM CDT

Kara started back to school today. She has been doing pretty good. She has headaches, but they have been about a "7" on the pain scale and that is better than the 8-9 that she had been having. She has been busy with cheerleading practice and driving (she has had her temps since the beginning of July).

We moved Kyle into his dorm this past Friday. He is doing really good. It has been an adjustment for us and we have been sad the past few days, but it's getting better. He'll be home this weekend already:)

Sherri & David

Sunday, August 20, 2006 7:58 PM CDT

Kara is still doing about the same. Her headache pain has been about about a 7-8 on the pain scale. It still does not stop her from doing all that she wants to do. She will start school next week.

We will be moving Kyle into his college dorm on Friday. He starts classes on the 28th. This will be a big change for our family and we are going to miss him, but his college is not too far from home.

Sherri & David

Wednesday, August 9, 2006 1:43 PM CDT

Kara's headaches have been better the past two days. She had been at a "9" on the pain scale of 1 through 10. The past two days she has been at a "7". Hopefully the diamox will continue to help lower her pain.

Sherri & David

Monday, August 7, 2006 3:58 PM CDT

We are thanking God today because everything went well at Kara's opthamology appointment today! We got good news! Kara's optic nerves look great!! Dr. Ellis will see her again in November.

The only problem Kara is experiencing is bad headache pain, so today she took 1/2 of a percocet and emailed Dr. Frim. She is on diamox twice a day, so he may want her to increase it. We'll see what he has to say. Thanks for your prayers and for checking on Kara.

Sherri & David

Friday, August 4, 2006 8:11 AM CDT

Kara is still having headaches, but yesterday was a better day for her:) There does not seem to be any difference in her headaches without a shunt as compared to when she had a shunt. Her incision is healing up nicely. She continues to do her normal activities and is having a good summer. She is still taking Diamox twice a day. She will see Dr. Ellis (Opthamologist) this Monday to have her optic nerves checked, so pray that all will be fine with them! I wanted to thank some dear friends who have been so supportive. Bev (who lives near me), Debbie Reeder from North Carolina (her daughter has Chiari and PTC), Michelle Gameron from New Jersey - www.caringbridge.org/nj/jessica, and Cathy Poznik from Twinsburgh, Ohio - www.caringbridge.org/oh/calvin. Thanks guys!

Sherri & David

Friday, July 28, 2006 9:21 AM CDT

***Please keep our friend Diana in your prayers. She is having VP shunt surgery on Monday***
www.caringbridge.org/tx/diana

Kara went to the doctor on Tues. and her incision looks great! She had a terrible headache last night and I felt so bad for her. It hurt worse when she laid down to go to sleep, so it must have been a high pressure headache (Dr. Frim told us last week that she has pseudotumor cerebri, which is high intracranial pressure). We are starting her on diamox again and we will see how she does on it. Other than the headaches that she has always been bothered with, she is doing well. Thanks for checking on her.

Sherri & David

Monday, July 24, 2006 2:42 PM CDT

Kara continues to do well! She has an appt. tomorrow with our local doctor to get her incision checked.

Next month she will see the opthamologist to make sure her optic nerves are fine. She does not have to return to see Dr. Frim in Chicago until Dec. 26th. She will then have a spinal tap done in the O.R. to check her pressure.

Sherri & David

Wednesday, July 19, 2006 9:44 PM CDT

We made it home late this afternoon! Kara is doing pretty good. She has some incision pain and head pain, so she is taking percocet. We are very happy and thankful to God that everything went so well with this surgery! Thanks again to Linda, David's mom Marian, Allery, Alex and Zach for their support in Chicago!! We appreciated all the prayers and support for Kara!

Sherri & David

Tuesday, July 18, 2006 6:59 PM CDT

Just a quick update to let you all know that Kara was released from the hospital today!! We are now staying at the Ronald McDonald House! Kara is doing great and we are very thankful to God that all has went well with her! Thanks so much for all of your prayers and support. We appreciate it so much!

Sherri & David

Monday, July 17, 2006 9:11 PM CDT

To All:
Kara 's surgery went well, she was put in her room a couple of hours ago.
During the surgery Dr. Frim called us and said her pressure was at 26 (20 would be high). He said that since we have been adjusting her shunt the last 6 months without her noticing any change along with the shunt being pulled out and not working for at least 3 of the months, he gave us a choice of taking it out or hooking it up.
We choose to take it out, we will have her watched by an opthamologist along with trying different pain meds. We will follow up at a later date to have her pressure checked to see if it is lower or not.
Kara will spend tonight in the cardiac intensive care unit (the picu was full) so they can monitor her close due to her past problems. Then tomorrow she should go to a regular room.
As of tonight Dr. Frim said Kara should be out this week, Im sure we will know more tomorrow.
My Mom, Sister Linda and two Nieces (Alex and Allery)were here and left about 4 hours ago, Sherri and I appreciated them being here. Also thanks for all the prayers from all our family and friends. Will keep you posted. As you probably can tell by the run on sentences, poor punctuation, grammer, spelling this is David writing this and not Sherri.
-David

Saturday, July 15, 2006 10:18 AM CDT

We are leaving for Chicago early tomorrow morning and will be staying at the Ronald McDonald House. We plan on taking Kara to Navy Pier and Michigan Avenue on Sunday, so that should be fun.

Kara's surgery is scheduled for Monday afternoon. She is to be at the hospital at 12:00 noon. Please pray that all goes well with her surgery and recovery and pray against any infection. Pray too that we will have a safe trip to and from Chicago.

Dr. Frim will do a spinal tap first and if her pressure is normal then her shunt will be removed and this is what we are prayig for! If her pressure is high then the shunt will be re-connected. Kara will then have to go to the PICU because of problems she has had in the past, but hopefully she won't be there long and can be moved to a regular room.

The anticipation of this surgery has been great, as it is so hard to watch Kara go through this again, but we put our trust and faith in God! We will update after Kara's surgery as soon as we can. Thank you for your support!

Sherri & David

Wednesday, July 5, 2006 8:48 AM CDT

Kara's head pain has been pretty darn bad lately. Dr. Frim is trying her on Depakote, but so far it has not helped and it changes her personality a bit. He really does not want her to keep taking percocet either.

Kara is going to have surgery on July 17th. Even though we got good news last month, it's still very hard to deal with the process of it all and the fact that she will need another surgery (her 12th). Dr. Frim will do a spinal tap first and then determine what to do next. If Kara's pressure is normal then he might go into her side incision and remove her shunt (this is what we are praying will happen)!! If her pressure is high, then he will have to re-connect her shunt back together. Please keep Kara in your prayers. Pray that everything will go well and pray against infection!

Sherri & David

Friday, June 23, 2006 5:19 PM CDT

Today we took Kyle to his college orientation and we will pick him up tomorrow. Kara did not feel too good walking around all day. The past few days have not been too good for her. Her head pain has been awful and we're not sure why it has been worse. She has been taking diamox for the past 5 days, so we're not sure if that has something to do with it, or not.

Please keep Baylie in your prayers. She is having shunt revision surgery on Monday. (www.caringbridge.org/tx/baylieo)

Sherri & David

Friday, June 16, 2006 7:09 PM CDT

God is Good!! We received some great and interesting news yesterday! First of all, Kyle is doing well and will not need to see Dr. Frim again unless he has symptoms. Secondly, Dr. Frim was looking at Kara's shunt x-rays on the computer, when I asked if everything looked alright and he replied, "Well, not really!" I got really upset and left the room for a few minutes, because I know that if Kara has a shunt and it's not working then she would probably end up with surgery right away. Kyle came back out and got me and said that there was better news. Dr. Frim explained that Kara's shunt had been disconnected! The tubing somehow pulled out of the connector and about 17 inches of tubing that was in Kara's spinal column had now wound itself around to her side and that is why her side has been so sore. Dr. Frim said that he has not seen this happen before. We are not sure how long the shunt has been disconnected, but the last shunt x-ray that Kara had done locally was on March 14th and the shunt was intact, so somewhere between then and now her shunt has not been working.

The good news is that even though the shunt has not been working, Kara has not been very ill like a person would be if their shunt were not working. Dr. Frim explained that Kara would have been vomitting and hard to wake up and very sick and she is not. Of course she has terrible headaches, but that is nothing new. The thought is that Kara may not really need her shunt anymore! We are just stunned and are very happy about this news. It's pretty unbelievable! Also, we had more good news. Kara has some flow again at the chiari site and at the 4th ventricle and she hasn't had flow since Dec. 2004! This is all the best news we have had about Kara's health in the past 5 years! We are definitely thanking God for this!!

Dr. Frim's plan for Kara right now is to wait a month and try taking Diamox for her headaches. We are then to return to Chicago in a month and Kara will need to have a spinal tap done to check her pressure since she does not have a working shunt, (she will have the tap done in the O.R.). If they find that her pressure is low, or normal then they will probably go in and remove her shunt. If they find that her pressure is high, then they would have to re-connect the shunt. We really don't want her to have another procedure (surgery) done, but it will be positive if her shunt can be removed!

We got to visit yesterday with Baylie and her mom Tressie (www.caringbridge.org/tx/baylieo)! Baylie is such a cutie and Kara was able to be with Baylie while she had her shunt tap done! It was so nice to see them again!! Please keep Baylie in your prayers because her shunt is not working and she will need to have surgery soon! We also got to meet Hunter and his mom too (www.caringbridge.org/visit/thesosenheimerboys). Hunter is adorable!!

Once again, thank you for praying and for your support!

Sherri & David

Wednesday, June 14, 2006 8:10 AM CDT

We are headed to Chicago tomorrow morning. Kara and Kyle both have appts. to see Dr. Frim, so please keep them in your prayers. Pray that all of Kara's tests will turn out good and that we have a safe trip there and back. Kara is very nervous about this appt. She is going to have MRI's of her brain and spinal cord and a CSF flow study and then shunt x-rays and a possible shunt tap. She has never had a shunt tap with her LP shunt before and I guess the way they tap it is with a needle in her upper side. We just want to hear from Dr. Frim that her shunt is working fine and that she has good CSF flow at her Chiari site. Kyle is only having an examination, so all should be fine with him. Pray for me as well, since most of you that know me well, know that I am very phobic of needles and get squeamish easily and am very tired of watching my daughter go through so much.

We will post an update when we get back. Thanks so much for your support and prayers!

Sherri & David

Sunday, May 28, 2006 7:28 PM CDT

Things remain the same with Kara. She is functioning well, but still battles daily chronic pain. She is relying on advil and sometimes 1/2 of a percocet. The school year will soon be over, so that will be good, and of course Kyle is graduating on June 3rd. Kyle and Kara both have an appt. to see Dr. Frim in Chicago on June 15th. Kyle will be having a yearly examination and Kara will be having MRI's of her brain and spinal cord. We are not sure if she will have to have a spinal tap, or not. Hopefully not!! Please pray that her MRI's will come out good! Thanks for checking on us!

Sherri & David

Monday, May 22, 2006 11:39 AM CDT

Please keep our two Chiari friends in your prayers. They are still in the hospital:

www.caringbridge.org/visit/cristinas

www.caringbridge.org/visit/emilycullen

Kara is doing well. She has been able to stay in school for the past month, which is really good! She is still experiencing headaches and they are usually about a "7" on the pain scale, but she is functioning well at this time and still stays positive and smiles! There has been a few times that the pain went above a "7", so she just takes 1/2 of a percocet to help bring down the pain faster (than advil).

Kyle will be graduating on June 3rd, so we are busy trying to get ready for his graduation party!

Thanks for checking in and for signing the guestbook!

Sherri & David

Tuesday, May 9, 2006 10:37 AM CDT

*** Please keep our friend Cristina in your prayers. She had surgery last week and surgery again yesterday and will have to have another surgery next week, due to a shunt infection! ***
www.caringbridge.org/visit/cristinas

Not too much new to report. Kara is still taking the natural product, but we haven't noticed too much of a change yet. We need to give it more time. Kara did have quite a bit of pain yesterday in school, so she called me and I took her some medicine and she was able to stay in school the rest of the day, so that was good! We will be taking Kyle and Kara to see Dr. Frim next month.

I wanted to thank Lisa for the sending us the sweetest card in the mail yesterday! It really brightened our day!! Thank you!! Here is Lisa's webpage:

www.caringbridge.org/visit/zipperheadlisa

I also wanted to thank Debbie Reeder (my friend from North Carolina) for being such an encourager! We met a few years ago online when her 16 year old daughter Natalie was diagnosed with Chiari.

Thanks for your support!

Sherri & David

Monday, April 24, 2006 7:19 PM CDT

**New Pictures of Kara's Paintings**

Kara had a bad night with pain again. I do think we found something that may help her with pain and we are very hopeful about it. It is something natural and she is going to start on it in a few days. We are praying that it will help her feel better!

Kara just completed 2 new paintings! She hadn't picked up a paint brush since her last 2 surgeries! She really did a good job and we are very proud of her! Both paintings are already taken though. One painting was purchased from our local elementary school that Kara attended and is going to help raise awareness for ACM and SM. The other painting Kara is donating to the "Column Of Hope" Fundraiser to be auctioned off next month in New York! The money raised from the painting will help find a cure for Arnold Chiari Malformation and Syringomyelia and Related Disorders! You can also purchase an Original Painting, or Prints from Kara's art website: www.karasart.com

Sherri & David

Saturday, April 22, 2006 8:43 AM CDT

Kara went to her very good friend Erin's house to sleep over last night, but she ended up calling to come home. Her pain was so bad that she couldn't stay. She was miserable and feeling terrible when she got home and 1/2 a percocet was not enough to stop the pain, so she took a whole one. It's so frustrating to see your child in so much pain and not be able to figure it all out. There doesn't seem to be a rhyme or reason to it. Not even sure if it's high, or low pressure headaches, so we don't know whether to adjust the shunt up, or down. We just don't know what to do at times. Hopefully today will be a better day!

Sherri & David

Wednesday, April 19, 2006 8:28 AM CDT

Today is Kyle's 18th Birthday! "Happy Birthday Kyle"!!!

Kyle is doing well. His shoulder only hurts a bit, so he is trying to excercise it when he can. He has a very busy few months ahead! He has to attend the National Honor Society Banquet next week and the Prom. Then the following week he has to attend the Honor's Banquet, and then Graduation on June 3rd. We then have to make a trip to Chicago to see Dr. Frim on June 8th and then Ky has an orientation sleep over at College on June 23rd!!

Kara is still having some trouble with the rib and shoulder pain and of course headaches. She has an appt. with a local doctor tomorrow, so hopefully we can find a medication to help her soon.

Sherri & David

Monday, April 17, 2006 8:37 PM CDT

Kara had another day with the terrible rib and shoulder pain. It lasted for a few hours. Dr. Frim thinks it could be her shunt tubing, but Kara thinks it is from the syringomyelia, because she had trouble with this kind of pain before she ever had a shunt. Of course her head was hurting at the same time too, so she was miserable for awhile, but is doing better now.

Kara and Kyle have an appt. to see Dr. Frim in June, so Kara may have to have another MRI of her spine done at that time to see if there are any changes with the SM (syringomyelia).

Thanks for stopping by and signing the guestbook.

Sherri & David

Saturday, April 15, 2006 2:04 PM CDT

We wanted to wish everyone a "Happy Easter"!!

Kara has done better for the past few days, so thank you so much for the prayers!! Her pain is still between a 7-8, but has not gone higher than that. She is still having some problems with the rib and shoulder pain. We are still in the process of trying to find the right medication for her.

Thanks for checking in on Kara and for signing the guestbook!

Sherri & David

Wednesday, April 12, 2006 9:20 AM CDT

Kara is home again today from school. Her pain levels are very high right now. She is worse at night and in the morning. She is having bad head pain, rib and shoulder pain. We are asking for prayer for Kara!!

If you get the chance please stop by and visit Calvin's caringbridge page. He too suffers in chronic pain from Chiari Malformation and Syringomyelia. His parents attended the annual ASAP (American Syringomyelia Alliance Project) Charity Ball this past weekend. Calvin and Kara and other children were interviewed last November 2005 about their lives and living with chronic pain. This video was shown at the Charity Ball and an update was given about what they have been through since November (Kara had 3 more surgeries, etc.). Cathy and Jim Poznik gave excellent speeches about the kids and our need for more funding to help find a cure!! They did an outstanding job, so please check out Calvin's page and see the speech that they gave:

www.caringbridge.org/oh/calvinp

Sherri & David

Tuesday, April 11, 2006 6:57 AM CDT

Kara's head was hurting really bad last night, so she took 1/2 of a percocet and went to bed. This morning she felt terrible again, so she went back to bed and is sleeping. We have been in touch with Sheri (Dr. Frim's nurse) and we are trying to find a medication that will help Kara with her head pain. Some of the meds that she suggests....Kara has already tried and they haven't helped (anti-seizure drugs) etc. Hopefully, we will be able to come up with something soon.

Thanks for checking in on Kara.

Sherri & David

Friday, April 7, 2006 10:25 AM CDT

Kara is still struggling with head pain. It's seems worse at night and in the morning. We adjusted her shunt back down from 150 to 140. We emailed Dr. Frim a few days ago, but have not heard back from him yet. Hopefully we will hear from him soon.

Kyle is finished with physical therpay. He did have quite a bit of improvement with his shoulder. There is some pain when he moves his arm a certain way, but he does not have the constant pain anymore. The phsyical therapist wants him to continue doing exercises on his own. We also took Kyle to our family doctor and he does not think that he has Ehlers-Danlos. Kyle also got his meningitis shot for college, as he will be graduating in less than 2 months from high school and attending College in the fall.

Sherri & David

Monday, April 3, 2006 10:15 AM CDT

Please continue to keep Leann Vercher in your prayers as she recovers from Chiari surgery (decompression/fusion). www.caringbridge.org/la/kasiekelliekate

Kara had a pretty good weekend and kept busy. She is still struggling with chronic pain though. She usually has a harder time at night for some reason and has to rely on 1/2 of a percocet and sometimes that doesn't seem to help much. We adjusted her shunt from 140 to 150 thinking that might help her.

She did wake up this morning in terrible pain. She had a bad headache and awful rib and shoulder pain. She really could not move much. She took advil and used a heating pad to try to help decrease the pain. She did end up going to school, so we'll see how she does today.

Thanks for checking in on Kara and for signing the guestbook! We appreciate it!

Sherri & David

Tuesday, March 28, 2006 8:14 AM CST

Please keep our dear friend Leann Vercher in your prayers! She is having her first Chiari Decompression and a possible fusion on Thursday, March 30th in NY. Leann and her husband Ricky and two of their beautiful daughters Kellie and Kate and baby Shawn came to see Kara in the hospital in Chicago last January. You can visit their site at: www.caringbridge.org/la/kasiekelliekate

Kara is home from school today and is still in bed. She woke up with a terrible headache that she described as pressure with broken glass in her head. That just makes us so sad. She has been hanging in there, but has been relying a bit on 1/2 of a percocet for pain at times. Even though she feels this way she still pushes forward and still smiles!

Sherri & David

Wednesday, March 22, 2006 6:13 AM CST

We got an email from Dr. Frim's office and Kara's shunt dial was set correctly on 120. Since we went down on her shunt from 150 to 120....Kara has been having terrible low pressure headaches. Dr. Frim told us to go back up and so we adjusted her to 130 two days ago and then last night we adjusted her to 140. Hopefully this well help her. It is just so hard to see her in pain and it gets really hard after seeing her go through this for the past 5 years. She is usually smiling for other people, but when she gets home at night and lets her guard down, we see the pain and how if affects her and it is sad for us. As a parent it just eats away at you at times.

We're just glad that we have other "Chiari/SM" parents to talk to and that helps us out!

We are also proud that Kara just sold her 5th "Original Painting" and has sold numerous "Prints" to help fund research to find a cure for Chiari Malformation and Syringomyelia!! (www.karasart.com) - just click on the link above "Kara's Paintings".

Sherri & David

Sunday, March 19, 2006 3:11 PM CST

Kara has a sinus infection and is on an anitbiotic. Of course her head hurts worse because of this. We adjusted her shunt last week from 150 to 120. Kara then had to have an x-ray done to confirm the setting. The x-ray was done locally and then we mailed it out to Dr. Frim in Chicago, so we should be hearing from him soon. Hopefully her shunt is set correctly.

Kyle still continues with the physical therapy for his shoulder. He is doing a bit better, because the PT said that he is now able to do a few exercises that he could not do before. Kyle has an appt. in a few weeks with our family doctor to check on his shoulder and we will speak with him about the possible Ehlers-Danlos.

To see the interview of Kara and Baylie with CBS Channel 2 News in Chicago, just click on the link above "Kara and Baylie's interview".

Sherri & David

Monday, March 13, 2006 12:45 AM CST

Please keep our dear friend Jessica Gameron in your prayers! www.caringbridge.org/nj/jessica

Dr. Frim received Kara's x-ray from last month. His nurse emailed us and said that Kara's shunt is set on 150. We were shocked, because when we left Chicago it was set on 30! We had emailed Dr. Frim last month wondering why Kara had been having high pressure symptoms and I guess this answers our question. We then tried to adjust her ourselves last month, but maybe we did not do it correctly. We are supposed to go ahead and adjust Kara today from 150 down to 120. We're hoping to get another x-ray to send to Dr. Frim to confirm the setting is correct.

If you want to see the interview of Kara and Baylie on CBS Channel 2 News in Chicago, just click on the link above "Kara and Baylie's interview".

Sherri & David

Thursday, March 9, 2006 7:17 PM CST

Kara and Baylie Owen (www.caringbridge.org/tx/baylieo) were on CBS Channel 2 news in Chicago today. Kara was taped in January when she was in the hospital and her story along with Baylies' was aired today on the news! Both girls are raising funds to find a cure for Chiari Malformation!! We very proud of our daughter Kara and our friend Baylie!! Please read if you can!!!

You can click on the link above:
"Kara and Baylie interview with Chicago Channel 2 news"

Or go to:

http://cbs2chicago.com/health/local_story_068161513.html

Or go to: www.cbs2chicago.com and click on "Health"

Then download the interview!!

Thanks, Sherri & David

Thursday, March 9, 2006 2:09 PM CST

Please keep our dear friend, Jessica Gameron in your prayers, as she is having surgery today!
www.caringbridge.org/nj/jessica

Kara continues to have a bad cough. She is still handling things well for the most part, but had a hard time Tues. night. Her shunt was hurting, which is located on her upper left side and then her head was hurting terribly. She laid down on the couch with a heating pad on her side and an ice pack on her head. She took advil and when that didn't work, she took 1/2 of a percocet and went to bed. She seemed better in the morning.

Kyle's Physical Therapist is still hoping that Kyle's shoulder is only inflammed and that there is not a tear. There are some exercises that he can do where the PT thinks that his shoulder is not torn, and then there are exercises that Kyle cannot do and that makes him think that it could be torn. It will just take time to see what happens. Kyle has an appt. with our family doctor in 3 weeks, so we will know more at that time.

Thanks for signing the guestbook!

Sherri & David

Tuesday, March 7, 2006 1:40 PM CST

** Please keep our dear friend, Jessica Gameron in your prayers, as she is having surgery today 3/9/06**

Kara has had a cold this week, so her head has been hurting worse. Overall, we think that she is still doing better with the LP shunt than she did with the VP shunt. Her head pain is still daily. At times it will get worse and at other times, she seems to handle things well. She has been busy trying to make up all of her school work that she missed while she had the last 3 neurosurgeries, plus keep up with her current homework.

Kyle has been going to physical therapy twice a week for his shoulder. His physical therapist feels that Kyle's shoulder is not getting any better at this point and he thinks he possibly has a tear and not a strain. He will let us know more at his next appointment this Thursday. We will then have to see our family doctor and hopefully he will be able to give us more information on Kyle's hypermobility and whether, or not it is related to Ehlers Danlos.

Thanks for checking in on Kyle and Kara and for signing the guestbook. We appreciate it!

Sherri & David

Tuesday, February 28, 2006 10:30 AM CST

Kara is still doing pretty good. She didn't feel well Sunday night and her head hurt really bad, but she had just come home from watching her cousin's band play and it must have been too loud for her. She took some advil and 1/2 of a percocet and went to bed. Other than the headaches, she seems to be doing well.

Kyle injured his shoulder while we were in Chicago. He has a rotator cuff strain. He went to physical therapy last week and the physical therapist checked him over and told us that all of Kyle's joints are hypermobile (lax) and extend beyond what they should. The muscles around the injured shoulder are weak and he said that if he wanted to, he could just pull Kyle's arm right out of place, (because of the hypermobility and the injury). He then told us that it was Chiari Related. We know from talking to other friends* who have Chiari Malformation, that there is a condition called Ehlers-Danlos Syndrome (EDS)- (connective tissue abnormality - joint hypermobility) that tends to be related to Chiari and Kyle may, or may not have this, but we are really not sure. We will have to talk to our family doctor about it. We will update again soon.

* www.caringbridge.org/la/kasiekelliekate
* www.caringbridge.org/visit/kimberly

Sherri & David

Thursday, February 23, 2006 6:29 PM CST

Kara has been doing pretty good, although she still has head pain she seems to be handling it well. She was up this morning between 4:00 am & 5:00 am with terrible rib pain, so she took some advil and went back to sleep. She has been attending school again and was even able to cheer at the last 2 games (hand and arm movements only....orders of Dr. Frim)! Tomorrow night is the last basketball game of the season. We would like to thank both of Kara's cheerleading coaches (Kay Wragg & Judy Wright) for all of the support that they gave Kara this year. They have been absolutely wonderful and we appreciate it!

Sherri & David

Tuesday, February 21, 2006 7:20 AM CST

The past week has been so hard. Pap had a very nice service. Our nephew Jacob got up and spoke about pap and it made us both laugh and cry. He did such an excellent job! Pap is going to be missed so very much!!

We want to thank all of our friends who came to support us! It meant so much to us. Also, thanks to all of our friends who stopped by and brought food, etc. We appreciate it! Thanks also for all of your prayers too!

Sherri & David

Sunday, February 19, 2006 8:29 AM CST

Pap's viewing will be today at Misencik Funeral Home (Avon) from 2 to 4 and 7 to 9 pm. Tomorrow (Monday) will be his funeral service where closing prayers will be 9 am followed by a 9:30 am Mass at St. Mary's Church (Avon). Please continue to keep the Ketchesin family uplifted in prayer.
Thank you,

Sherri & David

Wednesday, February 15, 2006 11:48 PM CST

Our strong, courageous, loving father, grandfather & father-in-law Thomas Ketchesin (pap) lost his fight tonight and passed away February 15, 2006. He will be so very sadly missed! Please keep the whole Ketchesin family in your prayers!

Sherri & David

Wednesday, February 15, 2006 7:03 AM CST

David's father remains very critically ill. He was life flighted yesterday and has been in the ICU. He was having blood pressure problems and they have given him the maximum amount of meds to maintain his blood pressure at this time. He was also having trouble with his kidneys and was put on kidney dialysis in the middle of the night. He is also on a respirator too. We were all able to see him quite a bit yesterday and last night. David got home at 5:30 am and had to return to work this morning. Please keep Tom in your prayers! We will update again soon.

Sherri & David

Tuesday, February 14, 2006 10:19 AM CST

Please say a prayer for Kara's grandfather Tom. He was recovering pretty well and this morning had some trouble breathing, or stopped breathing and they have been working on him. I just left the hospital and they are life flighting him to another hospital. Kyle and Kara are coming home from school and we are going up to the hospital and meeting David and the rest of the family there. We will update later.

Thank you,

Sherri & David

Monday, February 13, 2006 8:19 AM CST

Thanks so much for all the prayers! The prayers definitely worked! This morning Kara woke up and her side feels better and only hurts a bit when she bends! It must be the shunt tubing irritating her. We were just so worried because what she was decribing was the same symptoms she had when her shunt infection started. We do know another person with a shunt who had similar pain and thought they were having a shunt infection too, but it turned out to be the tubing. It's just so hard to tell and of course you cannot let a shunt infection go, or it could go to the brain.

The only problem Kara is having is that her head hurts really bad. She seems to have high pressure headaches, because they hurt worse when she is laying down, and yet her shunt is set very low. We are going to try and lower her to the lowest setting today, which is 30. Right now she is at 40 or 50.

Again, Thank you for the prayers! We will update again soon.

Sherri & David

Sunday, February 12, 2006 6:29 PM CST

Kara is having some pain along her shunt tubing today. She says that the pain is similar to the pain she had last month when she began with the shunt infection. We are just hoping and praying that maybe it is just the tubing irritating her somehow. We called Chicago and talked to the "neurosurgery doctor on call" and he told us to wait and see how Kara does and then call them back tonight at 9:00 pm. Please keep Kara in your prayers that this is not another infection and that it's only something minor that will go away soon!

Thanks,

Sherri & David

Thursday, February 9, 2006 10:06 PM CST

Kara had a hard time sleeping last night and was up from midnight to 4:00 am with terrible head pain. We are thinking that she must be having high pressure headaches and yet that doesn't make too much sense, since her shunt is set at the lowest setting (30) and that could cause low pressure headaches. We emailed Dr. Frim and he would like for us to try and get Kara an x-ray done locally and then try to scan it and email it to him, so that he can take a look at it. We are just not sure that her shunt is set correctly and an x-ray will show the exact number that the shunt dial is set on. The only problem is trying to find someone that will agree to do the x-ray locally. Hopefully our family doctor will help us out. Dr. Frim also wants us to raise the head of Kara's bed, so that she is not laying completely flat.

Kara did make it to school for a 1/2 day in the afternoon, so that was good. She is glad to be back!

Kara's grandfather Tom got moved today to a rehabilitation hospital, and Kara was so happy to finally see him! He continues to make good progress.

Please keep Jaime Longoria in your prayers! He is still recovering from his heart transplant a few weeks ago. www.carepages.com "littlejaime"

Thanks again for all the prayers! We appreciate it!

Sherri & David

Wednesday, February 8, 2006 6:52 PM CST

Kara finally made it back to school today. She went for 1/2 a day then came home and later in the afternoon her tutor came for an hour. The only thing is.....she has been in bed since 5:45 pm (EST). It really made us sad that she got so worn out from this.

I think I am having a bit of a delayed reaction to all that Kara just went through last month. I think sometimes when you are in the middle of all that is happening (Kara's surgeries) then you are just trying to make it through each moment and then when you have time to reflect on it.....it then hits you and I've been a bit sad. I know that she went through alot and when I think about it, she has had 5 neurosurgeries in the past year. Of course it has been hard and yet there are still God's blessings mixed in with all of it and we certainly could not have gotten through any of it without our faith in God.

Kara's grandfather is still making good progess and will be getting moved to another hospital for rehabilitation possibly tomorrow.

Please keep Jaime Longoria (15 months old) in your prayers. He is still recovering from his heart transplant. www.carepages.com - "littlejaime"

Sherri & David

Saturday, February 4, 2006 6:55 PM CST

Kara had a pretty good morning, but this afternoon her head hurt bad and she felt dizzy. She said she felt very sick, so we adjusted her shunt back down from 50 to 30. We really don't like for her to be on the lowest setting, but that's what Dr. Frim suggested if her head started hurting worse. We had just adjusted her shunt from 40 to 50 two days ago, so maybe this is why her head pain got worse. She must not feel well at a higher setting.

Kara's grandfather is out of the ICU and has been moved to the step down floor. They are still hoping his lungs will improve. He may be moved to a another facility for rehabilitation sometime next week.

Thanks again for all the prayers and support!

Sherri & David

Wednesday, February 1, 2006 2:03 PM CST

Kara is still doing well. She is still experiencing headaches, but today the pain is a "6", which is better because the pain has been between a "6-8". All of her steri-strips have fallen off and all her incisions are healing up good. Dr. Frim said that if her headaches are still up towards an "8", then we need to adjust Kara's shunt back down to 30 instead of 40.

For all of you out there who have an LP shunt and have to wear a binder everyday, you are not going to believe this......
Kara lost her binder (lol)! We do not understand how she could have lost it, but she did. We have searched our whole house and have not been able to find it anywhere. She is supposed to be wearing it 24/7, so I guess we'll have to purchase one at a local store.

Kara's grandfather Tom is off of the respirator!! He is still on oxygen and had to have a picc line put in today. He has had a slow recovery, but is doing alot better! He's already asking if he can go home!

According to Jaime Longoria's parents (care page), he had a great night last night and they are weening him off of some of his meds. He is coming along now too! (www.carepages.com) - littlejaime

Thanks for all your prayers!

Sherri & David

Sunday, January 29, 2006 9:48 PM CST

Kara continues to do pretty well. She is still experiencing daily head pain, but it seems to get worse at night right now. Her incisions are healing up good. Two of her incisions still have the steri-strips on them. She continues to wear her binder and has about another month to go with that. We adjusted her shunt from 30 to 40 and we hope that we adjusted it correctly.

Kara's grandfather Tom is doing better and is alert now. The only problem that he has been facing is that they are having trouble taking him off of the respirator. Each day that they try, his respirations go too high and they have to keep him on it. He also has alot of "junk" in his lungs. They are hoping to get him off of the respirator soon, since it has been in for 12 days now and they want him off of it within 14 days. Please continue to pray for him.

Please keep Jaime Longoria (15 months old) in your prayers. He had his heart transplant and had some complications and was put on ECMO, but is coming along better now.

Thank you for all of your prayers and support. We appreciate it!

Sherri & David

Friday, January 27, 2006 7:12 AM CST

Kara's pain seems to have increased a bit. She seems to be worse at night when she is laying down. She woke me up last night, so I gave her some advil. We are going to adjust her shunt tonight from 30 to 40. We have been emailing Dr. Frim because we left in such a hurry, (because of David's father) that we really didn't get to see how to adjust her (LP) shunt. We had been used to the VP shunt.

Kara's grandfather Tom has been battling a fever and his heart rate has been on the high side. There is still some concern over his lungs, so please continue to pray for him.

Please pray for "Jaime Longoria". He is 15 months old and just received a new heart last night. We met his family in Chicago at the Ronald McDonald House. They are from Texas and have been in Chicago for quite some time now. Please pray that everything continues to go well for him!

Sherri & David

Wednesday, January 25, 2006 1:19 PM CST

Kara got the stitches out of her head yesterday evening. She was nervous for some reason, but did fine. The rest of the stitches on her body are disolvable. Kara continues to heal well. Her headaches are still better than they used to be, although her head hurt a bit more yesterday and her ribs hurt pretty bad too. By the evening the pain was better. We will start to adjust Kara's LP shunt tomorrow. Dr. Frim is happy that Kara is doing well at the lowest setting, but thinks in the long run it would be better for her to be set a bit higher.

It has now been one week since Kara's grandfather had a massive heart attack. He continues to make good, slow progess and has been stable, but still sedated. Thanks to everyone who has been praying for him. He is such a fighter!!

Sherri & David

Monday, January 23, 2006 3:29 PM CST

Kara continues to do well. She is getting the stitches out of her head tomorrow. All her other wounds seem to be healing good.

Please continue to keep Kara's grandfather Tom in your prayers. He is having a slight problem with his heart rate and his chest x-ray is a bit worse, but they are changing his meds around to see if that will help. At this time, he is still sedated.

Sherri & David

Saturday, January 21, 2006 1:45 PM CST

Kara is still doing well. The only problem we have with her is that she wants to over do things. We have to keep reminding her to lay down. She is allowed to be up for 2 hours at a time today. The best news is......her headaches are better!!!!! Today her headache is a "4"!!!!! What a blessing!! So far her headaches are definitely doing better with the LP shunt!! She just has to make sure she lays down, or her head hurts worse with being up for so long (due to her shunt being at the lowest setting (30).) Next week we will start to adjust her shunt back up each day.

David's father had open heart surgery yesterday. He had a "5" by-pass. He has had some obstacles, but there has been so much prayer and he is such a fighter and continues to make an amazing, slow recovery! He is still sedated at this time, but we are all thankful that he is doing so well!!

Thanks to everyone for the prayers that have been lifted up for Kara and her grandfather Tom!!

Sherri & David

Thursday, January 19, 2006 9:30 PM CST

Kara is doing well. She's having a hard time laying down though. She'd rather be up and around, but Dr. Frim only wants her up for 1/2 hour at a time. We are to double the time each day that she can be up. Next week we will have to start adjusting her shunt from 30 up one cm a day for 5-7 days, aiming for 80 to 100 on the setting.

David's father has not had open heart surgery yet. His lungs have been full and they are going to possibly do the surgery tomorrow morning. He has not been awake at this time (they are keeping him sedated), so please keep him in your prayers.

We will update tomorrow.

Sherri & David

Wednesday, January 18, 2006 10:11 PM CST

We made it home tonight (a day early), because David received a call at the Ronald McDonald House this afternoon from his sister that his father had just had a massive heart attack and was life flighted to the hospital. Dr. Frim was in surgery, so the nurse checked Kara over quickly and David packed the car and we headed home immediately.

Please keep David's father (Tom) in your prayers. He is in the Cardiac Intensive Care Unit. They have him sedated and on a respirator and plan on doing surgery tomorrow.

Sherri & David

Tuesday, January 17, 2006 10:31 AM CST

After almost 3 weeks in the hospital...Kara has finally been released over to the Ronald McDonald House!! We are all very happy! She still has to lay flat and can only get up for 15 minutes at a time. Dr. Frim still wants to see Kara Thursday morning for a check up.

We will try to update again soon.

Sherri & David

Monday, January 16, 2006 10:34 AM CST

**New Photos Added**

Kara is doing well! Her spirits were lifted yesterday, when she got a surprise visit from her friend Paula and her elementary art teacher Jen Sturges!! She was so happy to see them and we want to thank them for making the trip from Ohio and for all the gifts that they brought with them! It was so nice to visit with them!!

Kara still had to lay flat as of yesterday. This morning she was allowed to sit up slightly, but they want her to take it slow. This afternoon they may finally let her get up and walk....we'll see. Her shunt is set at the lowest setting and they don't want her head to start hurting her too bad when she is up. So far she is feeling pretty good!! Hopefully we will be able to leave the hospital soon and at least go over to the Ronald McDonald House.

Kara & Dr. Frim were interviewed by Chicago Channel 2 news (CBS) today at noon. Dr. Frim contacted someone from public relations about Kara selling her artwork to raise money for a cure for Chiari Malformation and Syringomyelia and the news station was interested in her story, (we are not sure when the story will air).

Sherri & David

Sunday, January 15, 2006 8:15 AM CST

Kara didn't have the shunt series of x-rays done because they didn't want her to have to sit up right for them, so they brought the x-ray machine up to her room and only did an abdominal x-ray and that came out fine. Kara still continues to have to lay flat, because when she sits up, or stands up she gets a very bad low pressure headache. Her shunt was adjusted the day before to the highest setting (200), but yesterday they adjusted it down to the lowest possible setting (30), because Dr. Frim wants most of the spinal fluid to drain away from the tubing area in hopes that it will seal itself off. They still want Kara to continue to lay flat and she is starting to get tired of it.

We are getting some surprise visitors today, so we're hoping that will help cheer Kara up.

We had another visit from the Vercher family yesterday. They are such a wonderful family! We hate to see them go back home today!

We also got to visit with another family from Brunswick, Ohio. Teresa & Bruce Fenohr are here with their 15 year old son Rossi. He came to see Dr. Frim on Thursday and has been admitted and will be having surgery soon and they were told that they will be here for awhile, so please keep them in your prayers.

Please continue to pray that Kara will soon be feeling better and that the leak will seal. We have been here for 17 days and are all looking forward to going home soon.

Sherri & David

Saturday, January 14, 2006 11:07 AM CST

Kara is finally turning the corner and is starting to feel better and we thank God for that. Her back is hurting less and she is off of the demerol PCA pump and is now taking percocet, valium and ibuprofen. The only problem that she is having is that when she stands up her head hurts very bad, but when she lays down it feels better. Dr. Frim still thinks that she is leaking from the tubing under the skin when she stands up and that it has not sealed itself yet. When she stands up and leaks it feels like a low pressure (spinal) headache. Dr. Frim has Kara laying flat for right now. They are going to take her down today for a shunt series of x-rays to check and make sure that the shunt is in tact and that nothing has disconnected. We will update later with the results.

Thanks to everyone for their prayers and support! We truly appreciate it!!

Sherri & David

Friday, January 13, 2006 8:21 AM CST

Kara's recovery has been slow. This has been one of the hardest surgeries that she has had (pain wise). The doctors did increase her demerol yesterday and she is still using the PCA pump for it. She is also on valium, percocet and ibuprofen besides the demerol. Kara did get up and try to walk yesterday, but it was hard for her. She tried walking down the hall a bit last night and she had to make it back to her room because she ended up throwing up. Her head throbs very bad when she stands up & along with the vomitting Dr. Frim thinks she is having low pressure headaches when she stands up, so they are probably going to adjust her shunt to the highest setting today. Dr. Frim thinks that maybe she is leaking around the seal under the skin whenever she stands up and they want that to try and seal. Also, her back is still hurting quite a bit too, but we are hoping that today will be a better day. Kara was originally supposed to get released from the hospital today, or at least that was the plan earlier in the week, but it looks like we are going to be here a bit longer. We are just trying to keep her comfortable and keep her spirits up!

We had a wonderful visit from the Vercher family yesterday. Kellie and Kara were glad to finally meet each other. They are a great family! We want to thank them for sending Kara the paints, brushes and canvases. Kara was very happy to receive them. (www.caringbridge.org/la/kasiekelliekate)

We also want to thank the Toth family for the pajamas! Also, thanks to Michelle Bowers for sending the Disney blanket! Thanks to Cathy Poznik for the purple blanket that she made last month for Kara (she loves it)!! (Hope we are not leaving anyone out).

We thank everyone for their prayers and support! We will try to update later.

Sherri & David

Thursday, January 12, 2006 8:10 AM CST

Yesterday was another trying day for Kara. She has had so much pain from this surgery and it's frustrating for her and it's frustrating for us to watch her go through it. We are praying that she turns a corner for the better soon. We have been here for two weeks and Kara just wants to get better, so she can go home!

The doctors have increased her demerol this morning and she has her binder on and they want her to slowy sit up and then try to walk today.

We are looking forward to a visit from the Vercher family today. They are from Louisiana and have an appt. with Dr. Frim today. Kara and Kellie are excited to finally meet each other. www.caringbridge.org/kasiekelliekate

Please keep praying that Kara's pain will get better.

Sherri & David

Wednesday, January 11, 2006 12:41 AM CST

Today Kara still seems to be having alot of pain and did not get much sleep. In the middle of the night she got moved to a new room. Today they allowed her bed to be moved up slightly. They will be putting her binder on and by tomorrow afternoon she should be able to sit up in her bed. If all goes well she should be released sometime next week.

Today the Chicago White Sox World Series Trophy was here at the hospital & they brought it up to Kara's room (guards and all) Kara got a picture next to it.(Being Indians fans it was nice to have the World Series trophy so close to us since the Indians will have it next year)

Please continue to keep Kara in your prayers, so she keeps feeling better each day.

A special Congratulations to my friend Don Mikuluk who's wife had a baby boy on 1-10-06!

Thanks
-David & Sherri

Tuesday, January 10, 2006 2:32 PM CST

Kara had a very rough night last night. She was in extreme pain and didn't get much sleep. They are trying some new meds today along with the demerol. We were worried that this wasn't normal, but Dr. Frim said that sometimes it takes certain people more time to adjust to the tubing in the body.

This afternoon she is starting to fall asleep and rest better. She still has to lay completely flat on her back, or side, so she has not been able to lift her head up yet, or sit up.

We did get moved to a step down room last night, but we are hoping that Kara will get a private room soon.

Please continue to pray for her pain levels to decrease. Her back and lower body are hurting her the worse and she can hardly move without alot of pain, so she usually tries to stay in one position on her side and won't move.

We want to send a HUGE "Thank You" to Aunt Linda, Uncle Steve, Aunt Brenda, Uncle Denny, Aunt Mary, Uncle Tom, Nannie & Pap and cousins for the absolutely stunning, beautiful "Diamond Ring" that you sent Kara for her birthday!!!!! She was so surprised and she LOVES it!!!!!! Linda.....your poem was so touching, we could barely get through reading it!! Thank you & hopefully Kara will call you soon!!

We want to thank Diana for the balloons and the stuffed animal!! www.caringbridge.org/tx/diana

We appreciate all the prayers and support! Thanks for all the wonderful and encouraging messages in the guestbook!

Sherri & David

Monday, January 9, 2006 3:21 PM CST

kara is out of surgery. She is in the PICU. We haven't had a chance to update because she is in so much pain. Please pray for her pain to decrease!

Sherri & David

Kara was in the Chronicle Telegram today: www.chroniclet.com

Monday, January 9, 2006 6:10 AM CST

Today is Kara's 15th Birthday!

***Kara is in the Chronicle Telegram Newspaper today. We haven't seen the article yet, but thought we would let our local family and friends know about it.***

The nurse just informed us that they are taking Kara down for surgery around 6:30 and her LP shunt surgery should be around 7:30 am (which is 8:30 am Ohio time). It's hard for David and I to see her go through this, but we are praying hard and just believing that God will bring her through this and that her surgery will be successful. Please keep Kara in your prayers and that there will be no infection or complications.

We will update as soon as we can.
Sherri & David

Sunday, January 8, 2006 2:45 PM CST

Kara had a great birthday celebration today!! Erin McGarvey and Rachel Walbom both surprised Kara with a visit (thanks to Georgette McGarvey for driving all the way from Ohio). Also, thanks to Shelly for driving Kyle and Mikey all the way from Ohio too!! Paul flew in two days ago so we sure had a room full! We ordered pizza and had cake and Kara opened gifts.

We want to thank Michelle Gameron and family for sending us the great luncheon yesterday from TGI Fridays!! Kara was really surprised and loved it!

Also, thanks to Lisa (Zipperhead) for the Pajama Gram!! Kara loves the pajamas!!

Please keep Kara in your prayers for tomorrow morning. Her surgery is scheduled for 7:30 am. We will update as soon as we get the chance tomorrow.

Sherri & David

Friday, January 6, 2006 12:45 AM CST

*We wanted to say a big "Thank you" to Lisa Morgan for bringing Kara a birthday cake!!

*We also wanted to thank the Cavanaugh family for their visit and for helping us with a gift for Kara and for
dinner!!

****Kara's surgery has been changed to 7:30 am instead if 10:00 am.

Kara's LP shunt surgery is scheduled for Monday, January 9th at 10:00 am. Of course the 9th is Kara's 15th birthday, so we are going to try and celebrate in the PICU on Sunday the 8th instead. Please keep Kara in your prayers for her next surgery. Pray that she comes through the surgery fine and that there will be no infections or complications. Once again, thank you all for your continued prayers and support. We truly appreciate it!

Sherri & David

Wednesday, January 4, 2006 12:17 AM CST

Kara is still continuing to do well. We talked to Dr. Frim last night and he mentioned that he would like to possibly do Kara's shunt surgery on Monday, but we told him that it's Kara's birthday on that day, but he says that at least she can get the surgery over with and recover and that she can get home sooner. There is still no set date though and neurosurgery is supposed to talk to the infectious disease doctors to see what surgery date they can come up with. There was still some concern because there were two infections. One she had in her spinal fluid and the other they found on her shunt tubing after it was removed, so they want to make sure all infections are cleared up and gone before putting in another shunt. All her cultures have been coming back negative, so that is very good! We were also very blessed that the shunt infection was caught early and did not go to Kara's brain. We thank God for that!!

Dr. Frim is still talking about putting in an LP shunt. He told us that it is getting too risky to keep putting the VP catheter in Kara's collapsed ventricles. Plus, her VP shunt has not been working for her since she has Pseudotumor Cerebri and Slit Ventricle Syndrome.

We will update again when we know more. Thanks for all the continued prayers and support and for signing the guestbook. We appreciate it!

Sherri & David

Tuesday, January 3, 2006 12:22 AM CST

Kara is still doing pretty good. She is only complaining of headaches, but that is pretty usual for Kara. She is still in the PICU and will remain here because of the external shunt. Let's just say that when Kara got her picc line put in that she did a whole lot better than mom and dad. They only had a minor problem when they put it in and the line went up too far and went into her jugular (spelling?) vein. They had to then pull it out some and when they did another x-ray it was in the correct place. We haven't talked to Dr. Frim yet and hopefully we will soon, so that we will know when the infection is gone and we can get the next surgery date. Thanks again for all the prayers and support and for signing the guestbook.

Sherri & David

Monday, January 2, 2006 1:07 PM CST

Kara continues to recover well from her emergency shunt surgery on Friday. Because she is going to be on antibiotics for quite awhile, she will be getting a picc line put in today, so please pray that it goes well. The doctors have told us that Kara won't be having her next shunt surgery for at least another 10-14 days, or so. They want to make sure the infection is completely gone before they put the next shunt in. We are still not sure whether Kara will have a VP, or LP shunt this time. We are waiting to talk to Dr. Frim about it and he should be in tomorrow morning.

Thanks again for all your prayers.

Sherri & David

Sunday, January 1, 2006 6:59 AM CST

We want to wish everyone a "Happy New Year". We were able to ring in the New Year with our son Kyle and that made us so happy! He drove in the day before with our nephew Mike & Shelly and Paul, who also got to be with us for the new year.

Kara's CT scan came back just fine (Thank God). They only noticed that the catheter in her ventricle was in a little too deep, so they came in and pulled back on it a bit and it is fine now. They switched her antibiotics last night from Vanco to Penicillin, because they were able to identify the infection and this bacteria responds better to penicillin. They did let Kara know that they are going to be putting in a "pic line" on Tues., because she will be on antibiotics for awhile. Kara has been in some pain, but it is controlled. She is frustrated because she hasn't been allowed to get out of bed and when she is allowed her external shunt drain will have to be clamped off. Right now, if Kara raises, or lowers her bed, then her shunt drain has to be adjusted each time.

The doctors tell us that after they can get a "negative" result on her infection, then it will be another 10 days, or so after that until Kara can have her shunt put back in. We fell bad for her because that means that Kara will be here for her 15th birthday on Jan 9th.

We are still not sure whether Kara will have an LP shunt put in, or the VP shunt that she has had. Pray that we will make the best decision on this.

We want to thank everyone for their prayers and support and the messages in the guestbook! Kara really appreciates it and so do we. We could not get through this without all the prayers!

We will update again soon.

Sherri & David

Friday, December 30, 2005 8:29 PM CST

We made it to Chicago today and we took Kara through the E.R. She did end up having a shunt infection and had to have emergency surgery. Everything happened so fast and Kara was pretty upset and so were we. Dr. Frim removed Kara's shunt completely and she now has an external shunt. They will have to wait a week or more to make sure the antibiotics are working and that the infection is gone and then Kara will have to endure another surgery to have a shunt put back in. Dr. Frim is considering putting in an LP shunt and not the VP shunt that she has had. Please keep Kara in your prayers. She came through surgery fine, but there is some blood in her spinal fluid that is draining directly from the ventricle of her brain, so she is supposed to have a CT scan tonight. We are praying that it is nothing serious.

It has been a very hard day on Kara and on all of us, but we continue to pray and trust in God.

We will update soon.
Love, Sherri & David

Thursday, December 29, 2005 9:55 PM CST

We just got back from the Emergency Room. We were there since 2:00 pm. Kara had quite a few tests done. Her white count was elevated. They found quite a bit of fluid in her pelvic cavity and they were not sure why. They scared us a bit and said that there was inflammation and swelling and that they did not want it to abscess. They weren't sure where the fluid was coming from and didn't know if it was coming from one of her organs. At that point we had them call Dr. Frim, because we know that her shunt drains fluid into her peritoneum. Dr. Frim said that she could possibly have a shunt infection and that we need to bring her to Chicago. So.....we are going to sleep for a few hours and then head out to the E.R. in Chicago. They are going to do labs, CT scan, Shunt series of x-rays, and a shunt tap to see if Kara does or does not have a shunt infection. If she does then she will need to have surgery to take the shunt out and she will need to be on antibiotics for awhile. If it is not her shunt then they will have a pediatric doctor check to see what other problem it could be. Please pray for Kara. We are hoping that it is not a shunt infection because we don't want her to have to go through more surgeries. We also don't want anything to be wrong with her pelvic area either. Please pray that we have a safe trip as well.

Sherri & David

Thursday, December 29, 2005 12:35 AM CST

Please say a prayer for Kara. We are taking her to the local Emergency Room. Her abdomen has been hurting for days and we are not sure if it is her shunt tubing, or something else. We will update when we get the chance.

Sherri & David

Thursday, December 22, 2005 7:18 AM CST

Kara started back to school and all her activities this week and did pretty good. The only problem she still seems to be struggling with is pain. She continues to rely on her percocet about once a day, she does take advil, but it doesn't seem to help very much. We made her an appointment with a pain management doctor at the Cleveland Clinic on Jan. 4th, so we are hoping this doctor can help Kara somehow manage her pain. We adjusted her shunt Monday night from 140 to 130, but haven't noticed too much change.

If you get a chance, please visit Kara's new webpage (click on the link above). She is raising funds to help find a cure for Chiari Malformation and Syringomyelia and for all those who suffer from it, by selling her paintings and reprints.

We would like to give a big "Thank You" to Brenda (www.caringbridge.org/ca/daverurka) for adding the link to Kara's page!

Thanks for all your prayers and support and for signing the guestbook. Hope everyone has a Wonderful Holiday!

Sherri & David

Saturday, December 17, 2005 10:36 PM CST

We adjusted Kara's shunt Tuesday night from 120 up to 150, so that her shunt would drain less fluid from her brain. Dr. Frim emailed us and told us to drop her down a notch every few days, so on Thursday night we took her down from 150 to 140. She seemed to have less pain this morning and her headache was a "6" when she woke up, but by this evening her head pain was back up to a 9 and she had to take a percocet to help with the pain. This seems to be a pattern for Kara, where she will wake up at a "7", or so and then by evening her pain increases.

Please keep Devin in your prayers: www.caringbridge.org/ut/devinross

Sherri & David

Monday, December 12, 2005 9:44 PM CST

We heard back from Dr. Frim by email and he said that we would probably need to try all different pressures on Kara's shunt. If any of them do not work, then Dr. Frim recommended that Kara plan another trip back to Chicago for a couple of weeks in the hosptial where they would trial her with a lumbar drain to see if that would alleviate her head pain, and if it did, then proceed to adding the Foramen Magnum shunt (catheter) to her existing shunt. We weren't expecting to hear this and we're hoping that Kara does not have to have another hospital stay, or another surgery.

For now Dr. Frim wants us to turn Kara's shunt all the way up to 150 and then adjust her down a notch every 4-5 days until she can find out where she is the most comfortable. We are hoping this will help and that she can find a setting on her shunt that makes her feel better. Tonight we adjusted her shunt for the first time (we were nervous and hoping that we did it correctly). We turned her shunt from 100 to 120.

Please keep Jess Gameron in your prayers. She is having a terrible time with pain and could possibly be facing another major surgery: www.caringbridge.org/nj/jessica

Thanks for your prayers and support!
Sherri & David

***We will soon be giving out a new webpage where you will be able to purchase Kara's artwork (original paintings & reprints). Kara wants to continue to help raise funds to find a cure for Chiari Malformation & Syringomyelia.***

Sunday, December 11, 2005 9:09 AM CST

Kara is still experiencing bad headaches and we can't figure out if they are low pressure headaches, or high pressure headaches. Kara emailed Dr. Frim even though he is out of the country and he emailed her back and said that we should probably try adjusting her shunt at home. He thought we should adjust her down to 80 (she's set on 100), so that the shunt would drain more, but we are thinking she needs to drain less, so David and I emailed him back to make sure and we are waiting for a response back from him. Right now Kara is relying on her percocet to help with the pain, but even that is not working very well. Of course this doesn't stop Kara from doing too much and she has been busy painting and doing other things and then laying down a bit in between when she needs a rest. Please pray that her pain will decrease.

Sherri & David

Tuesday, December 6, 2005 8:38 AM CST

Kara is continuing to do pretty good. Her incisions are healing up well. The only problem she has are the darn headaches. Her headache pain is still at "7" everday (sometimes an "8"), so that is a bit disappointing, but we are trying to give it more time. Kara's follow up appointment with Dr. Frim will be on March 2nd. We are also taking Kyle for a check up at that time too. Dr. Frim asked Kara to participate in a Research Study. It has to do with cognitive ability and if those abilities change with certain shunt settings.

Please keep Brent Poznik in your prayers. He is 9 years old and is having decompression surgery with Dr. Frim tomorrow (12/7/05). The Poznik family already has alot to deal with as their oldest son Calvin has Chiari and a Foramen Magnum shunt and has had many surgeries. Their webpage is: www.caringbridge.org/oh/calvinp.

There are also two other young women who had surgery on the same day as Kara and are still in the hospital, so please pray for them as well. One is Bronwyn (www.caringbridge.org/visit/bronwyn) and the other is Cristina (www.caringbridge.org/visit/cristinas).

Thanks again for all of you prayers and support!

Sherri & David

Thursday, December 1, 2005 9:10 PM CST

We are so happy because we arrived home this evening!! Kara is doing well, but is still having some trouble with headache pain and some incision pain, so she is still taking her pain medication. Right now she has to keep antibiotic ointment and gauze on her incisions until Monday. We now have a programmer for her shunt, so if she starts to get low pressure, or high pressure headaches will be able to adjust her shunt ourselves. Dr. Frim is hopeful that the anti-siphoning valve will help with the slit ventricle syndrome and will make her brain more spongey and normal as opposed to it being stiff, we know that he tried to add a little bit of fluid to her brain in the O.R. and her pressure went very high, which will happen if the brain is more stiff. He said that if the anti-siphoning valve does not help...then Kara would need to have the Foramen Magnum shunt put in and that would mean another surgery, so we are hoping and praying and believing that this will work!! Kara will have a follow up appointment with Dr. Frim in 3 months and we will probably take Kyle for a check up at that time too. We want to thank everyone for all the prayers and well wishes in the guestbook and for all of the support you have given Kara and our family!! We truly appreciate it!! We also wanted to thank our families for their financial support!! Also, thanks to Diana from Texas who sent Kara some cheerful balloons with a cute stuffed kitty!
We will update again soon!

Sherri & David

Wednesday, November 30, 2005 7:51 PM CST

Kara got released to the Ronald McDonald House earlier today. Dr. Frim wants us to wait around for a few days. We will probably take Kara over to see Dr. Frim sometime tomorrow and have him check her over and then see what he has to say about when we can leave. He likes for his out-of-state patients to stay in the area for a bit to make sure things are going fine. Kara was walking around alot this evening and noticed that her stomach incision had some blood underneath the bandage. We're making her take it a bit easier now!

Sherri & David

Wednesday, November 30, 2005 7:19 AM CST

Kara continues to do well. She was moved to a regular room last night. She is in some pain this morning, but isn't complaining too bad. She still has a headache and her incisions are sore, but guess what.......we haven't seen Dr. Frim yet, but his resident said that Kara could possibly be released from the hospital and over to the Ronald McDonald House today!!!!! Yeah!!

We will update when we know more! Thanks for all of the guestbook entries, Kara has enjoyed reading them from her hospital bed!! Thanks for all of the prayers too!

P.s. Kara is happy because they did not shave too much of her hair!!

Sherri & David

Monday, November 28, 2005 7:29 PM CST

*** New Pictures Added *** (check view photos)

kara's surgery went well. She was in surgery for three hours. Dr. Frim said that her ventricle tube and her shunt valve were both clogged, so he replaced both of them moving the valve to her head from her collar bone. He added an anit-siphoning valve and a T connector in case in the future she would need the foramen magnum shunt. He then cosmetically fixed the chest and abdomen scars after the tubing was moved. Dr. Frim checked her pressure and it was high. She has slit ventricle syndrome, so her brain is stiff as apposed to being normal and spongey. Dr. Frim is hoping that the anit-siphoning valve with help this sitituation.

Kara is resting in the PICU tonight. She has been in some pain but it is in control with demerol. They will monitor her blood work and temperature to make sure there is no infection. Thanks for your continued prayers and support. God is Good.

David and Sherri

Monday, November 28, 2005 12:21 AM CST

Hi,

Kara was taken back for surgery at 11:15am (12:15pm Ohio Time). She did really well and only started crying when they started to take her back to surgery and we had to give her a kiss and say goodbye. We thought we could avoid the Intensive Care Unit, but Dr. Frim wants her to spend 24 hours in the PICU, because of Kara's previous problems with medications and coding in the past. I guess that's good, because in the PICU they will watch her closely. Please keep her in your prayers! We are trusting God that all will go well. We will update sometime after her surgery.

Sherri & David

Friday, November 25, 2005 9:34 AM CST

We will be leaving for Chicago this Sunday, Nov. 27th. Kara's surgery is scheduled for Monday, Nov. 28th at 10:30am (11:30am Ohio time). She has to be at the hospital at 8:30 am. We have all been nervous about the surgery, but we are praying and believing in God that all will go well. Even though these risks are low, please pray against infection, malfunction of the shunt, or injury to her brain, or any problems with anesthesia, or medication. Thanks so much for your prayers and support! We will update from the Ronald McDonald House, or the hospital.

Sherri & David

Saturday, November 19, 2005 12:30 AM CST

Kara's shunt revision surgery will be on Monday, November 28th. We are not sure of the time yet. Please keep her in your prayers for no complications!

David & Sherri

Thursday, November 17, 2005 8:03 AM CST

We received a phone call from Dr. Frim last night. He told us that he can still do Kara's surgery on Nov. 28th, but Dr. Kahana would not be there. He said he can get someone else to follow exactly what Dr. Kahana did last year for Kara during surgery. I think we all got a little confused as to what to do. First the surgery was going to be Nov. 28th and then it got moved to the last week of Dec. and now it can be moved back to Nov. 28th. We would feel alot better knowing Dr. Kahana was on the case, but Kara feels that she cannot wait that long. We have all prayed about it and hopefully Kara will make a decision by today, (it's hard to realize that our daughter is only 14 years old, but has to make such adult decisions).

Dr. Frim explained to us that Kara's shunt is not working, although he cannot say why and that it could be the valve is broken, or the tube in her head is not draining etc. He wants to do surgery, so he can find out what is wrong. He will have to shave the side of her head along the shunt tract and he wants to move her dial and add an antisiphoning valve and change the tubing. All of her previous inicisions will have to be opened back up. There are a few on her head, collar bone and abdomen. Of course Dr. Frim told us that there are risks. He explained that some of them are risk of infection, malfunction, and injury to the brain, so please pray specifically for everything to be successful and that Kara will have no complications!

Once again thanks for your prayers and support. We apprecaite it!

Sherri & David

Monday, November 14, 2005 3:35 PM CST

We received an email from Dr. Frim's nurse that Kara's surgery is being rescheduled. Dr. Frim wanted the best anesthesiologist (Dr. Kahana) to be on Kara's case and she will not be able to be there on November 28th. Dr. Kahana was Kara's anesthesiologist last year and we felt so confident with her because Kara had coded in the past. Dr. Kahana is the clinical leader of the pediatric intensive care unit and professor of anesthesia and critcal care, so you can see why Dr. Frim wants her to be on Kara's case for surgery.

Dr. Frim will be out of the country for part of December, so Kara's surgery will probably be scheduled around the last week of December. Kara was upset at first because her pain levels have been so high and she feels like she can't wait, but we reminded her that we have all been praying about this and there is a reason that her surgery is being rescheduled and we will just continue to leave it in God's hands. In the meantime I called the Cleveland Clinic and we are in the process of getting Kara an appt. with a pain management specialist.

Thanks so much for all of your prayers and support. Please continue to pray for Kara.

Sherri & David

Sunday, November 13, 2005 2:28 PM CST

Kara's surgery is scheduled for Monday, November 28th. Please keep her in your prayers!

David & Sherri

Tuesday, November 8, 2005 6:37 PM CST

Kara has been strongly considering having shunt revision surgery. It's just so hard for her to come to this decision and it's hard for the rest of us too. We just hate to see her have to go through another brain surgery. David and I have been emailing Dr. Frim with questions about the surgery and we were upset to find out that Dr. Frim thinks Kara may need several shunt surgeries to make her feel better, and that is just so hard to come to terms with, so please keep Kara and our family in your prayers. Pray for God's guidance. Thanks again for all of your support and for the prayers. We appreciate it. Thanks for signing the guestbook too!

Sherri & David

Thursday, November 3, 2005 11:32 AM CST

We had to take Kara to the E.R. Tuesday night. She noticed that her shunt dial (which is located on her collar bone) made a cracking noise and then she was able to slide it back and forth under her skin and for the past 3 years it has been stationary. We wanted to make sure that her shunt was not disconnected in any way. It was not disconnected, so that's good!!

I emailed Dr. Frim about it and he said that it's not normal for the dial to slide around, although it happens sometimes. I asked him if he needed to take a look at it and he said that he wants to do shunt surgery on Kara and that until she decides to have surgery....there isn't much he can do for her right now. I think we have all been slowly realizing that we were getting to this point. Kara is considering having the antisiphoning valve added to her shunt, but she has not made any final decisions about it yet. Please keep her in your prayers.

Sherri

Tuesday, November 1, 2005 10:20 AM CST

Kara emailed Dr. Frim and asked him a few questions about what kind of shunt surgery he wants to do, so that she could research it. He said that she has "Slit Ventricle Syndrome". He also told her that he would add an antisiphoning device to her shunt for starters.

Kara missed school yesterday and I had to take some percocet to her today at school. Her head pain is worse when she lays down to go to sleep and in the mornings after waking up.

Sherri

Saturday, October 29, 2005 3:16 PM CDT

Kara seems to be having trouble with her head pain getting worse at night when she lays down. Her temples hurt and she says that it hurts behind her eyes. She has had to take 1/2 a tablet of her percocet instead of her advil. She also has a different kind of headache in the mornings. I'm sure this is related to her shunt not working. She emailed Dr. Frim and is waiting to hear back from him.

Sherri

Friday, October 21, 2005 8:03 AM CDT

Kara's appt. with Dr. Frim went well. First of all we got excellent news about her syrinx!! It has collapsed and we thank God for that!!!! We are also thankful for Dr. Frim, who is such an excellent neurosurgeon!

The other news about Kara is that her other conditions remain the same. Her ventricles are still collapsed and her shunt is not working. Dr. Frim also said that her Chiari area is tight again and there is no flow in front or in back. Kara also flat out refused to have a spinal tap done. She just couldn't bring herself to do it. Dr. Frim suggested that maybe she could return on the Monday after Thanksgiving and be sedated for a spinal tap, so that he can check things further for her.

With the shunt not working....Dr. Frim has suggested that for right now he can do the least invasive surgery for her by adding an anti-siphoning valve to her shunt and moving her dial from her collar bone up to her head and changing all her tubing from her head to her peritoneum. They would also be able to check to see if something is broken with the shunt. Dr. Frim thought Kara could have this done during Christmas break, but Kara really needs time to think about this and decide what she wants to do. She has really been against having surgery again and we don't blame her one bit and can understand why she feels the way she does.

As far as her daily head pain is concerned, Dr. Frim wants us to call a neurologist at the Cleveland Clinic and see what they can do for her with medications. This way we can be closer to home for that.

We did end up having some fun in Chicago this time. Kara's friend Kristi got to go with us and we went to Navy Pier and we all had a good time! We also got to see the Cavanaugh Family again. Brett Cavanaugh had surgery last year at the same time Kara did and this family was so good to us!! It was so good to see them all again!

Please continue to pray for Kara and the decisions that she has to make. Thank you to all who have been praying and who have supported us and for everyone who has signed the guestbook. We appreciate it!

Sherri & David

Sunday, October 16, 2005 8:26 AM CDT

We will be leaving for Kara's appointment in Chicago this Wednesday, Oct. 19th. We will be staying the night at the Ronald McDonald House. Kara will have MRI's at 8:00 am on Oct. 20th and then see Dr. Frim. She will probably have a spinal tap, which is done in the office, but she is very nervous about it and doesn't want to have it done, because the last one didn't go well. Dr. Frim feels that if he can do the tap and drain some of her spinal fluid out then it would lower her pressure and she would feel better for a few days.

Please keep us in your prayers. We are a bit nervous about this appointment for Kara and maybe that's because we have been in avoidance mode since last May when we found out her ventricles were collapsed and her shunt was not working. Dr. Frim will also be checking her sryinx and her chiari area (which was blocked off the last time it was checked and there was no CSF flow.) We're hoping and praying that things will look better this time.

Thanks again for checking on Kara and for signing the guestbook.

Sherri & David

Sunday, September 25, 2005 3:21 PM CDT

As you can tell from the new pictures...Kyle and Kara have been pretty busy with Homecoming Week. Kyle is still doing well and only gets an occasional headache. Kara's pain levels seem to go from a "6" up to a "10" at times. Of course when she is at a "6" she feels a whole lot better than when her pain is higher. Last week she missed her first day of school due to terrible head pain, but she took a quarter of a percocet and she fell asleep for 3 hours and when she woke up she felt alot better. I have to say again that she really doesn't let this stop her very much and she continues to remain active!

We will be going back to Chicago to see Dr. Frim in about 3 weeks for Kara's check up. He emailed us to say that he still thinks that Kara's pain treatment lies within her shunt and that he will be able to decide more on what to do when he sees her.

Thanks again for checking in on Kyle and Kara. We appreciate it and thanks for signing the guestbook!

Sherri & David

Saturday, September 10, 2005 1:35 PM CDT

In the past, Kara has been able to tolerate her pain pretty well, but lately she is having days that her pain goes beyond what she can handle and we feel so bad for her. She had one of those nights last night and it took awhile for her pain levels to go back down to a "7" on the pain scale. She said she had been above a "10". Unfortunately she has only Advil liquid gels to take for her pain, so we emailed Dr. Frim and we are trying to find some other kind of medication that will help her. It's hard to find anything that will work for her because she is allergic to quite a few meds.

We finally made an appt. for Kara to see Dr. Frim on October 20th. She will be having MRI's of her brain and spine and probably a spinal tap. Dr. Frim feels the tap will help relieve some of her high pressure and he still feels that she needs a shunt revision done, but Kara is still against it.

Please keep Kara in your prayers. For the most part she has good days and is fine, but it's just so hard to see her go through the times when her pain levels are so high.

Thanks for checking on Kara and Kyle and for signing the guestbook!

Sherri & David

Tuesday, August 30, 2005 6:52 AM CDT

New Picture of Kyle in "view photos"!

The kids went back to school today!! Kyle is a senior in high school this year and Kara is a freshman in high school! Things are going pretty good. Kyle's symptoms are not bad at all and he only gets an occasional headache, or he gets off balance sometimes. Kyle does not have to go back for a check up with Dr. Frim until February. Kara, on the other hand, still struggles with daily headaches and some occasional shoulder, arm and rib pain, but like I have said before...she does not let this stop her. She is also still getting the numbness from her toes to her groin area in both of her legs. I emailed Dr. Frim about this and he said that he will need to check her soon. She will need an MRI of her brain and spinal cord. We found out in May that her shunt is not working, so she will probably need a CT scan of her ventricles and possibly a spinal tap again. We are not looking forward to another trip to Chicago, but I guess we will have to do it, since Kara has not had a check up for 4 months and has not had MRI's done for about 7 months. I guess it's time to go back. Thanks for checking in on Kyle and Kara. We appreciate it!

Sherri

Saturday, August 6, 2005 1:40 PM CDT

Kara's opthamology appt. went well. Her optic nerves are still looking good, so that's a blessing! Dr. Ellis (opthamologist) did ask us what we are going to do about Kara's shunt not working. He also mentioned that it has been 3 months since Dr. Frim has taken a look at Kara and said that he is not going to see Kara again until Dr. Frim sees her again. I think we are all in denial and going through avoidance right now. Kara is also hiding symptoms from us. She told me yesterday that she has been having numbness in her legs from her toes up to her groin for awhile now. She also doesn't like to mention her head pain, or her rib pain to us anymore either. (Even though Kara has these symptoms she doesn't let them stop her from doing what she wants to physically). We are most likely going to make an appt. for Kara to see Dr. Frim in a month or two.

I'd like to mention that we have a new addition to our family. My sister Jenni and her husband Jared have a new baby boy "Conner David" born on July 30th, so Kara and Kyle have a new cousin!!

Thanks again for all of your support and for signing the guestbook!

Sherri

Wednesday, July 27, 2005 1:59 PM CDT

Kara and Kyle have been very busy and enjoying there summer so far. I asked Kara about her pain today and she said that she is in pain everyday, but just doesn't mention it to me anymore. She told me that it doesn't matter too much to tell me because there really isn't anything I can tell her to do, but to take her advil. It makes me sad that she has pain everyday and that there isn't too much we can do. She continues to hold off on surgery right now and I don't really know if that is an answer for the pain either. Kara has an appointment on August 3rd with the opthamologist to check her optic nerves again and hopefully all will turn out well with that again. Thanks for checking in on Kara and Kyle and for signing the guestbook.

Sherri

Thursday, July 14, 2005 2:50 PM CDT

Kara is doing good for the most part. She is still having daily head pain though. She was up at 3:00 am last night with her shunt hurting. It was hurting at the top of her head where the top part of her shunt is located. Not sure why she was experiencing that kind of pain, but Kara will have to email Dr. Frim and let him know. She started cheer practice and that has increased her pain a little bit so far, but not too bad. Kara is still trying to hold off on shunt surgery for now and we are not sure when she will go back to see Dr. Frim, but it will probably be in the fall. She does need to have brain and spine MRI's done and a CT scan and probably a spinal tap done again too. Today, Kara had to have a birth mark (mole) removed. She has had this birth mark since birth and I was told that it needed to come off before puberty, but we put it off due to all the other medical procedures that she was going through. The doctor is making sure that it is being sent away to make sure everything is okay. Her next appointment is with the Opthamologist on Aug. 3rd.
Thanks so much for checking in on Kara and for signing her guestbook!

Thursday, June 30, 2005 11:52 AM CDT

Kara and Kyle are enjoying there summer so far! Kyle is doing well with his symptoms (only off balance at times), so that is good!! Kara is still about the same. She has chronic pain everyday, but handles it well. The past few days her pain has increased a bit and her headaches have been worse, but she pretty much just goes on about her day!

I recently emailed Dr. Frim because Kara got a bee sting on her right foot a few days ago and she hardly noticed that she was stung. I know that she has some muscle weakness in her right leg from the sryinx (syringomyelia) and it concerned me that she barely could feel the sting. I checked her foot and the stinger was still in it, so I scraped it out and had to cut away some of her skin and it didn't seem to bother her. Dr. Frim said that she may have areas of permanent reduction of pain sensation from her syrinx and sometimes it takes an injury to find this out. He said that on her next appointment he will examine her with pins in more detail.

Right now we are at a stand still as to whether or not Kara will have a shunt revision (since her shunt is not working). She is still refusing to have it done and in a strange way we feel like we have a break right now from all the medical procedures that she goes through. It feels good to have a break even though in the back of our minds surgery may need to be done in the future. We are of course praying about it and just taking one day at a time. We were going to make an appt. for Kara to see Dr. Frim in August, but Kara is hoping to wait until the fall. She didn't really want to have to go through another spinal tap, MRI's, CT scans & X-rays etc. at this time. Her next appt. with the opthamologist is on Aug. 3rd to have her optic nerves checked again.

Hope everyone has a great 4th of July. Thanks so much for checking on Kara and for signing her guestbook! We appreciate it.

Thursday, June 23, 2005 8:52 AM CDT

Kara is doing good right now. Her headaches have been at about a 6-8. She has had more "6" days lately and that is good. She has become more active in the past few days and this has caused her pain to increase to an "8" at times.

We emailed Dr. Frim to find out when he needs to see Kara again for a check up. He said that it's up to Kara and how bad her symptoms are at this point and he also said she is in the "driver's seat" on these decisions since it is her body and only she knows how much pain she is in. He said he would like to do another "shunt check" type of visit again and he thinks she still needs some sort of manipulation of the shunt to help her drain more spinal fluid (adding an anti-siphoning valve). She also needs to have MRI's done again since it will be 6 months since her last ones. We are thinking of making an appt. to see Dr. Frim in August and yet we know Kara will have to go through another spinal tap in his office and the last one was not pleasant at all, so we don't know if Kara will want to go in August, or just wait. Dr. Frim said that for sure he will need to see her before December.

So far her optic nerves look good and that is a blessing! We get so nervous before these appointments, because if they find that the optic nerves are not looking good then Kara will be forced into shunt surgery. Her next appt. with the opthamologist will be on August 3rd.

Like our friend Caty (who suffers from Chiari Malformation & Pseudotumor Cerebri) said to Kara in her guestbook, "I pray one day there will be a better answer to our pain than surgery and shunts". We agree!! You can visit Caty at: www.caringbridge.org/oh/caty

Thanks again for your prayers and support and for signing the guestbook.

Sunday, June 12, 2005 2:08 PM CDT

Kara will be seeing Dr. Ellis on Wed. June 15th to have her optic nerves checked again. She has to have them checked every six weeks now. She is still having headaches everyday that are about 7-8 in pain, but she has not made any decisions on having another surgery again. We think it's in the back of her mind and whenever she thinks about it she gets stressed out. She will also see the pain management doctor again on June 21st. We're hopeful that he will be able to help her deal with the chronic pain that she experiences on a daily basis. Thanks to everyone for your prayers and support and for signing the guestbook.

Sherri & David

Thursday, June 9, 2005 5:56 AM CDT

Kyle and Kara are finally done with school for this year. Their last day was yesterday, so they are happy!

Today Kara has an appt. with a neurosurgeon in Cleveland. Dr. Frim had suggested that we have someone close by for Kara only in case of an emergency with her shunt (since Frim is 5-6 hours away), other than that she sees Dr. Frim.
I'm a bit nervous to see what this doctor has to say about her shunt not working and the other problems she is having.

Kyle is doing good. He only complains of an occasional headache and some neck pain. The only other problem he has is that he is off balance at times. Other than that he is fine.

I will try to update today when we get home from Kara's doctor appt.

Sherri

Friday, June 3, 2005 6:45 AM CDT

Not too much new to report. David and I emailed Dr. Frim with some questions about Kara's medical condition and the fact that she is trying with all her might to hold off on another surgery and won't discuss it at all (we don't blame her, as we don't want to see her go through another surgery either). Dr. Frim has left the surgery decision totally up to Kara. We asked if any harm can be done to Kara with her shunt not working and her Chiari site not having any CSF flow again. He said as long as her eyes remain okay her condition will continue to cause her pain, although she has experienced chronic pain for the past 4 years and it doesn't seem that any surgery has ever helped to relieve it. Dr. Frim said that he would be happy to speak, or email Kara to help work out a plan and he also said that she will always be one of their very favorites (that was sweet).

Kara will have an appt. on June 15th to have her optic nerves checked again to make sure everything is okay with her eyes. Thanks again for the prayers and support, we truly appreciate it and thanks for signing the guestbook.

David and Sherri

Wednesday, May 25, 2005 5:24 AM CDT

So far Kara has chosen to avoid another surgery at this time. We don't know if that will change, or not. She is still not talking about the subject. We will be taking her to see Dr. Ellis (opthamalogist) in Cleveland on June 15th. He wants to see Kara every 6 weeks to make sure her optic nerves are okay, since her pressure is high.

Kara also has an appt. with Dr. Janata on May 31st at University Hospital. He is a pain management doctor and a psychologist. We're hopeful that he will be able to help Kara find ways to manage her pain and help her with some other issues that she is going through right now.

Thanks,

David & Sherri

Friday, May 20, 2005 7:29 AM CDT

Kara heard back from Dr. Frim about surgery. He wants to attach a Foramen Magnum catheter (shunt) to her VP shunt and place an anti-siphoning component at the same sitting. He thinks that will give Kara the most likely chance of getting it all fixed with one surgery. Of course Kara thinks differently and has heard that the Foramen Magnum shunt surgery is quite painful, plus it is done through the Chiari incision again.

Kara asked Dr. Frim if she could just start off with only the anti-siphoning valve surgery first and then see how she feels after that. He told her that would be fine too. I know with that surgery he wants to also move the dial mechanism on her VP shunt from her collar bone up to behind her ear and will have to pull up the tubing with that. Kara is pretty much in denial and doesn't want to have another surgery and doesn't want to talk about it either, so we are not sure if and when this surgery will take place. It is also weighing heavy on David and I, as we don't want to see her go through anymore pain and surgery again, so we are praying about it.

********************************************************

Tomorrow Kara will have 2 of her paintings going up for auction and she will be speaking at the Column of Hope - Chiari & Syringomyelia Research Foundation. This is the 3rd annual "Working Toward A Day Without Pain" dinner at the Buffalo/Niagra Marriott in Buffalo, NY. This event funds an important pain research study at the Miami Project for the cure of Paralysis. This event is important to Kara and Kyle, and over 250,000 other Americans who suffer the painful effects of Chiari Malformation and Syringomyelia. This study is investigating how GABA Cell Therapy can use the body's own defenses against neuropathic pain. We are very proud of Kara and that she can take part in this event! We will post some pictures when we get back.

Thanks for your prayers and support! We appreciate it!

Sherri & David

Friday, May 13, 2005 4:12 PM CDT

We are home from Chicago. It was a very long day for Kara. She had a CT scan that revealed that her ventricles in her brain have completely collapsed.

She then had a spinal tap done and that did not go well at all and it took over an hour and three sticks later to work. Kara was in a lot of pain and we felt so bad for her. The tap did not reveal good news either. Kara's shunt was set on 30 and her actual pressure in her head was 165, so her pressure is very high. Kara then laid on her side while she had CSF drained manually to lower her pressure.

Dr. Frim says that Kara needs to have another surgery. He said that he can first try adding an anti-syphoning valve to her VP shunt and move her mechanism up to behind her ear and pull up her tubing and see if that helps her. If that doesn't help then he said he would need to do yet another surgery to put in an LP (lumboperitoneal) shunt, or a Foramen Magnum shunt to help lower her pressure since her ventricles can no longer do that because they are collapsed. Or....he said he can just do both surgeries at once (the anti-syphoning valve and the LP or Foramen Magnum shunt). This was not the news that we or Kara wanted to hear at all and we can't imagine her going through another surgery, but we are going to hold onto our faith and keep praying about it.

We now know why Kara has not felt well and why she has not been in school for 5 weeks. She looks fine on the outside, but has felt terrible physically due to the problems that Dr. Frim found.

Please keep Kara in your prayers....we appreciate it so much! Also, thanks for signing her guestbook too!

David & Sherri

Tuesday, May 10, 2005 12:07 AM CDT

We will be leaving for Chicago on Thursday Morning (May 12th). Kara will have a CT scan to check the size of her ventricles and she will have a shunt series of x-rays done and she will have a spinal tap done as well to check the pressure in her head. I must say that we are all pretty down about this appt. We are all getting a bit weary of it all....especially Kara. We know that her shunt is not working and yet Kara is avoiding surgery and we don't blame her. We also know that her Chiari area is blocked off again, her 4th ventricle is blocked off too and there is no CSF flow.

Kara's pain levels have been high and she has not been in school for the past month and this is stressful on her and on our family. We are hoping that Dr. Frim will find some kind of medication that will help Kara with her pain. So far we have tried Topamax and Neurontin and both have not worked. We think if her pain levels can come down, then she will feel so much better. David and I just feel so bad for her and it breaks our hearts and at times we feel so helpless, but we keep praying that things will get better for her.

Please keep Kara in your prayers.

David and Sherri

Friday, April 29, 2005 11:42 AM CDT

Well.....Kara's pain levels are still high, so we will be heading back to see Dr. Frim in Chicago in less than two weeks on May 12th. Kara will have a CT scan to check the size of her ventricles and she will have a spinal tap again to check the pressure in her head. Dr. Frim is still mentioning operating on Kara's shunt, but Kara has been trying to avoid another surgery.

She also has an appt. on May 4th to see an opthamalogist with University Hospitals in Cleveland because of the Pseudotumor Cerebri.

We put in a new photo in the "View Photos" section of a painting that Kara just finished last week. This painting will be auctioned off next month in Buffalo, NY for the Column of Hope (Chiari & Syringomyelia Research, Inc.) Kara will also be speaking at this event.

Please continue to keep Kara in your prayers.

Thanks, Sherri & David

Saturday, April 23, 2005 6:11 PM CDT

Kara missed school last week again. She is still having bad head pain. She emailed Dr. Frim, but we know he is still in China. She may be having low pressure headaches and if that's the case Kara may be able to go to the Cleveland Clinic and have Dr. Luciano adjust her shunt. We are not sure if we are going to Chicago in May or not. Dr. Frim did mention that Kara would need to have another spinal tap done next month. We are just waiting to hear back from him.

I put in a new photo in the "view photos" section of a painting that Kara just finished today. The painting will be auctioned off next month in Buffalo, NY for the Column of Hope - Chiari & Syringomyelia Research, Inc.

Thanks for your continued prayers! We appreciate it!

Sherri

Thursday, April 14, 2005 10:56 AM CDT

Kara is having a bad week with her pain levels. She has been at about an "8". She missed school all this week and tried to go back today and only made it for about an hour or two and had to come back home. She seems to have a hard time in school and when she is in pain feels like she cannot concentrate and the lighting seems to make her feel worse too.

We discontinued the diamox last week, because it seemed like it was causing her to have low pressure headaches, but now she seems a bit worse. I called Dr. Frim and he is in China right now, so I have been emailing his nurse.
I'm just waiting to see what she has to say. The thought of shunt surgery just keeps looming and I know that Kara is trying hard to avoid it, so please keep her in your prayers.

Sherri

Thursday, April 7, 2005 9:56 AM CDT

Hi,

Kyle is doing pretty good. He is bothered by occasional headaches and his balance is off at times. I've emailed Dr. Frim because he told us that Kyle has a bulging disk and we wanted to find out more information about it, plus Kyle wants to lift weights and we are not sure he is allowed to do that. Other than that Kyle is doing well.

Kara on the other hand has a lot going on and I have felt like just sticking my head in the sand. I've been waking up with anxiety over the thought of her going through a 9th brain surgery. We are not sure what decisions to make. I have been spending the past 2 weeks trying to research information on the Foramen Magnum shunt. Dr. Frim has done only 5 pediatric cases with this kind of shunt, so there isn't alot of information on it. I am concerned about the VP shunt being replaced and possibly having the catheter pulled out of the ventricle, because there was mention that there is a risk of getting a bleed in the brain. There is a 1-300 chance of that happening.

Both shunts would be tied together to help Kara drain CSF better. The VP shunt that Kara has now runs from the ventricles in the brain all the way down her body into the abdomen area and the foramen magnum shunt would be put in near the brain stem (chiari) area and then that tubing would be tied into the VP shunt tubing.

Kara also has a new diagnosis of "pseudotumor cerebri" which is "Intracranial Hypertension". Intracranial means inside the skull and Hypertension means high fluid pressure, basically the pressure of the fluid that surrounds the brain is too high. Because of this Kara has an appt. in May with a pediatric opthamologist to have her eyes and optic nerves checked, to make sure everything is alright with her vision.

We will also be making an appt. to return to Chicago in May for Kara to have another spinal tap done.

Please pray for Kara and our family to make the correct decisions about her health. Dr. Frim emailed us and said that Kara is a wonderful young woman, however, her medical situation is frought with risk in all direction. I must say that you wouldn't know that to look at Kara because she looks fine and she almost always has a positive attitude! Hopefully we can soon work the shunt problems out and there won't be so much to deal with.

Thanks for the prayers and support, we appreciate it!

Sherri

Friday, March 25, 2005 11:00 AM CST

We are back from Chicago. First, Kyle had his MRI done and the good news is that he does not have syringomyelia with the chiari and he also has good spinal fluid flow. Dr. Frim said that as long as his chiari symptoms did not worsen, he would not do any surgery at this time and he will be monitored once a year to watch the chiari and spinal area. We were very relieved and happy with this news and so was Kyle!

As for Kara, the news was not as good. Her shunt is not working. They did a spinal tap to check the pressure in her head. The pressure was twice the normal range (Kara's shunt was set on 100 and the actual pressure in her head was 200), they drained four tubes of spinal fluid out of her to get it within normal range to see how she would feel. Her head pain was very minimal after this and she felt better, this is only temporary and within a couple days the pressure will go back to where it was. By doing this Dr. Frim feels it shows that the shunt is not working. (Also, in February when they tapped her shunt it was barely draining), so yesterday they adjusted the shunt back down to 30 and for the time being he wants to put her on diamox to help keep the fluid in her head lower. After the school year ends in June Dr. Frim is suggesting a surgery to replace her whole VP shunt and add a foramen magnum shunt (which is inserted near the brain stem), so both shunts will keep draining her fluid better. He only has the dual shunts in one other patient to date and that patient is doing well. Since her ventricles are small he would have to remove the tube in her ventricle and the whole way down her body and there are risks involved with the ventricles (this was not good news).

Kara is in such constant head pain that we want her to feel better, but a another surgery was not what we were expecting. As of now we will take one day at a time. I am going to pick up the diamox and we will try that. As for now Kara said she does not want another surgery and we don't blame her, but we don't know what to do since her shunt is not working and we can't leave it that way either. We also want to go over the details again with Dr. Frim on the risks that he mentioned. We will just continue to Pray and look to the Lord for answers.

David

Monday, March 21, 2005 12:24 AM CST

Please keep Kyle and Kara in your prayers. We will be leaving for Chicago Thursday morning (March 24th). Kyle will be having MRI's of his brain and spinal cord at 1:00 pm. After that both Kyle and Kara will be seen by Dr. Frim. Kyle will have a neurological exam and we'll find out more about what's going on with him.

Unfortunately Kara is going to have a spinal tap done. Dr. Frim said that he cannot do a shunt tap because Kara's ventricles are so small that he cannot get an accurate pressure reading, so he has to do a spinal tap instead. Kara opted to not have sedation, because she did not want to go to the OR, so she will have the spinal tap done in the exam room. We are just praying that it's not too painful for her. The spinal tap will give an accuarate pressure reading and will let Dr. Frim know whether Kara's shunt is working properly or not. We will let you know the outcome when we get home. Thanks again for your prayers and for your support!

David & Sherri

Monday, February 28, 2005 4:21 PM CST

Well it looks like we will be headed back to Chicago in about 3 weeks (March 24th). We received an email from Dr. Frim's office and they want to see Kyle. He will be having MRI's of his spine and brain and believe me....he's not too happy about it because he can be clausterphobic at times. He knows that Kara has been through it sooo many times, so he says that he will be okay. I know that David and I will feel alot better once Kyle has the MRI's and a neurological exam and we know just exactly what's going on with him.

Kara is still battling pain. The topamax did not work for her and she didn't feel well on it at all, so she is going off of it. She had emailed Dr. Frim about her high pain levels and he emailed her back and was (as he put it) rather direct with her. He mentioned that she might need a spinal tap done to make sure that her shunt is not the problem and to lower her pressure. He also mentioned exploring the chiari site again with surgery! Wow...we weren't expecting that, especially Kara! She does not want to do the surgery and she also does not want the spinal tap done, so we are not sure what is going to happen. She just sent another email back to Dr. Frim today, so we are waiting to hear back from him again.

We will continue to leave everything in God's hands and like always we thank all of you for your continued prayers and support!

Sherri & David

Wednesday, February 16, 2005 12:40 AM CST

We heard back from Dr. Frim about Kyle and he said that Kyle will need to have an MRI of his spine to check for Syringomyelia and a neurological examation. Dr. Frim said that he can do this the next time we bring Kara in to see him. As long as his symptoms are not too bothersome he can be watched, but we will feel alot better once Dr. Frim checks Kyle out. So far Kyle seems to be handling things very well, so that's good, but Kara has certainly shed some tears for her brother.

Kara is still dealing with alot of pain and so far the topamax has not started working, but we want to give it more time. She feels alot of pressure in her head, which is probably due to there being a clog in her shunt. Dr. Frim also told us that he would like to put in an anti-siphoning valve in Kara's shunt. This would help the ventricles not to over drain and they would be able to maintain a normal size instead of being too small. Kara's not up to that right now, so Dr. Frim wants her to email him once a week to let him know how she is doing. If she gets worse then he will need to see her again.

Thanks so much for all of your support and prayers! We couldn't get through this without our faith and without the support of our family and friends!

David & Sherri

Tuesday, February 15, 2005 12:27 AM CST

Last night we found out that our son Kyle has been diagnosed with Chiari Malformation too. As we think back to all the many times that he has complained about symptoms of headaches and numbness and tinglining in his hands and having a feeling of being unbalanced...we just passed it off as maybe he was having some anxiety. We are all pretty much in shock right now. Dr. Frim said it is a small chiari, but Kyle is symptomatic, so we are waiting for Dr. Frim to answer some more of our questions and to see if he wants to take a look at Kyle's spinal cord.

We are supporting Kyle as this is a surprise to him because he has watched all that his sister has been through. He pretty much feels like the diagnosis has not sunk in yet.

Please keep Kyle in your prayers!! We will update on Kara again soon.

Thanks, Sherri & David

Friday, February 11, 2005 6:18 PM CST

To All:

We returned today from taking Kara to Chicago. Dr. Frim went over Kara's test results with us. First, while they did the shunt tap, the spinal fluid was flowing slowly out of her head and this took a while to do, Dr. Frim suspects a possible shunt block may be happening, because when he tapped her shunt in October before her last surgery she had a faster flow and that's the way it should be working. He said the test also showed that her ventricles are small, this may be from over draining for such a long period of time, (still not completely sure).

Next, he reviewed the MRI findings with us and said that where the chiari is located in the back of her head it is now completely blocked again and the spinal fluid is not flowing at all, also her 4th ventricle is blocked again as well. When he started mentioning to Kara about surgery she said no. They then adjusted her shunt to 100 so it would drain less, then we had to wait until this morning to make sure her head pain was lower than yesterday before we could leave. We are now starting her back on topomax (which is an anti-seizure drug that helps with neuropathic pain and headaches). Dr. Frim also mentioned shunt surgery to Kara and that she might need a non-siphoning valve put in instead of the one she presently has. She's against that right now as well. A big part of all these problems for Kara is that she has scar tissue building back up. Dr. Frim also mentioned the car accident and that maybe that had to do with the changes she has had.

Well as you can read, this news was not very good and I told Sherri to remember "Job" in the bible, where his faith was tested. Kara along with Sherri and I believe that she will be getting better, for some unforseen reason it's just not God's time. It's very hard to see Kara in daily pain, and right when you think she is getting better, it changes again.

Like always keep Kara in your prayers-David

Wednesday, February 2, 2005 9:40 AM CST

We will be leaving for Chicago next week (Feb. 10th). Kara has been having a rough time with her pain levels and there is still a question if her shunt could be causing this or not. She is also having alot of Chiari symptoms and what's concerning is that she didn't even have these kind of symptoms when she was first diagnosed 4 years ago. She has been experiencing extra head pain whenever she coughs, sneezes, laughs, or strains. We do know that the last MRI results in Dec. showed no flow in the back of her head again (posteriorly). The SM (Syringomyelia) has also been bothering her shoulder, ribs, arm, hand and her leg and sometimes she said it feels like 500 needles sticking her the foot (although Dr. Frim thought the syrinx had looked better).

Dr. Frim ordered a shunt series of x-rays, MRI's and extra veiws of her spine and then Kara will see him after all this is completed in his office where she is going to have her shunt tapped (they will stick in a needle in the top part of her head where her shunt is and then pull spinal fluid out). We had been trying to avoid the tap, but we can't any longer. The tap will be able to show us if her shunt is working correctly and what her pressure is and if there is any infection. Kara is not looking forward to any of this and neither are we, but we have to remain positive and keep trusting in the Lord, and believing that things will turn around for her, which we believe they will!

Please pray that she will not get an infection from the tap itself and that she will get better and have less pain, or better yet....no pain at all!! We will post from Chicago to let you know what Dr. Frim has to say!

Thanks, Sherri & David

Saturday, January 22, 2005 7:42 AM CST

So far Kara's headache pain has not decreased. She continues to function, but at times gets tired of the pain. We would like to avoid another trip into Cleveland and just wait for Kara to see Dr. Frim. Her appointment in Chicago is in about 2-1/2 weeks, so we'll wait and see what he has to say. We are concerned because of her MRI results and the fact that she has little to no flow posteriorly again and scar tissue building back up again too, but I don't think there is too much that we can do about that.

Sherri & David

Saturday, January 15, 2005 10:15 AM CST

Well....there has not been too much change to report with Kara's headache pain. The headaches are still about a 7-8. Dr. Luciano's assistant told me yesterday to give it another week and see if there is any change. Hopefully Kara can return to school this coming Tuesday. We're praying that her pain will decrease soon.

David & Sherri

Tuesday, January 11, 2005 1:17 PM CST

We just got back from the Cleveland Clinic. Thankfully Kara did not have to have a shunt tap. It was considered, but the doctor felt that he would try adjusting her again and see what happens, before doing a tap. This is her biggest adjustment yet. She was at 30 and is now set at 60. He wants to see how she does for a few days or weeks. We did get copies of Kara's recent MRI from Chicago and she has "no flow" again and there are adhesions as well, so this is disappointing news, but we haven't got to discuss this with Dr. Frim yet and our appointment with him isn't until Feb. 10th. We will post again soon and let everyone know how she does with this new adjustment.

Sherri & David

Monday, January 10, 2005 7:44 AM CST

Hi,

Yesterday was Kara's 14th birthday!! She is still having some difficulty with her pain levels. She stayed home from school today and is on the couch with an "8" headache. It gets frustrating as parents, because sometimes we just don't know what to do anymore. I did call Dr. Luciano at the Cleveland Clinic and he wants to see Kara tomorrow morning at 9:00 am. She will most likely have her shunt adjusted and there was talk of having her shunt tapped, which we have been trying to avoid because it can cause infection. Tapping her shunt can also let the doctor know what her accurate pressure is and if the shunt is working or not (a shunt tap is where they stick a needle into the top of your head where your shunt is and pull spinal fluid out). We'll let you know how her appointment goes tomorrow. Thanks,

David & Sherri

Thursday, January 6, 2005 12:23 AM CST

Just a quick update on Kara. I had to go and pick her up from school today. Her head pain has been increasing again. Of course I'm not sure why and there never seems to be a rhyme or reason to the pain. I'm thinking it may be low pressure headaches from the shunt draining heavily, or the fact that there is scar tissue building back up again. Once again..we will just keep praying and try to continue to think positive!

Sherri

Sunday, January 2, 2005 12:50 AM CST

Happy New Year!!

So far Kara has been doing better since her shunt adjustment in Chicago! Her pain levels have been lower (between 2-4...instead of 7-9)!! Every once in awhile the pain will get to be about a 7, but she takes Advil and it goes back down. She has really been taking it easy and hasn't done alot of physical activity, so this may be helping with the pain decrease as well! We are looking foward to having a better year with no more surgeries!!!

Kara has an appt. scheduled for Jan. 17th with Dr. Luciano and she has an appt. with Dr. Frim on Feb. 10th in Chicago. Hope everyone is having a great start to the New Year!

Sherri & David

Monday, December 27, 2004 6:28 PM CST

We are back home from Chicago. Kara was in the E.R. for about 7 hours yesterday. The first thing the nurse came in and did was blood work and an IV. The nurse said the IV was needed in case Kara would have to go to the O.R. the next day for her shunt. Kara then got very upset and David and I and Kara all looked at each other when surgery was mentioned!! Kara of course got very upset and when she had the blood work done she just about passed out and we have never seen her react that way before! She felt like throwing up and then she got very pale and had ringing in her ears and told us that she was blacking out. It took her a bit to recover. She then had an MRI and CINE MRI done and that took about 1-1/2 hours. Dr. Frim then wanted Kara to be admitted since they adjusted her shunt back down to "30", he wanted to wait until the next day to see how she felt and if the head pain was still bad then he wanted to "tap", (stick a needle in her head), her shunt and see what pressure reading he got and to make sure there was no infection. Kara begged not to be admitted and to see if she could just stay in the area over night. Dr. Frim was concerned that maybe her shunt was not working, or that maybe the Cleveland Clinic did not adjust her shunt properly.

Dr. Frim then showed us the MRI which was the first one since Kara's surgeries in Oct. He told us that there was some scar tissue building back up and that could possibly be the cause of Kara's headaches. He also said that there was not alot of room around the brain tonsils for the CSF (cerebral spinal fluid) to flow and that he noticed on the MRI that it was still somewhat tight in there...he did say that some people are fine with that amount of flow, but he had hoped Kara would have more. He said he really didn't want to touch that area again...unless it was the last resort because he said that when Kara has surgery....nothing seems to go smoothly for her.

After all of that....Kara put up a fight about no surgery and about not being admitted, so they released her. When her IV was getting pulled out...she just about passed out again and we couldn't leave because she had to lay down. We think she has just hit her limit and has had enough with medical issues.....she's just plain tired of it all and we don't blame her!!!!!

We did end up staying in the area for awhile and then we had to call Dr. Mattielo (Dr. Frim's resident) and he ended up speaking to Kara over the cell phone and she told him that her head felt better and that her pain was around a "3 or 4"....which was alot better because her pain levels have been between "7 & 9"! So...the doctors thought that maybe her shunt was just adjusted incorrectly this last time in Cleveland and maybe that was the cause of the increased head pain.

We will return to see Dr. Frim in about 6 weeks and we have another appt. with Dr. Luciano at the Cleveland Clinic in about 3 weeks. We are just to keep an eye on her pain levels and make sure that there are no shunt problems.

It was somewhat disappointing to see Kara's MRI. We were hoping that things would have turned out a little better and we are hoping that the scar tissue and the somewhat tight flow won't continue to cause Kara problems. It sometimes feels like this is never going to end, but we'll just keep praying and believing in the Lord! Plese keep Kara in your prayers! Once again...thank you for all your support!

David & Sherri

Saturday, December 25, 2004 3:38 PM CST

We will be taking Kara back to Chicago to see Dr. Frim tomorrow. We couldn't get an appointment with him, so he suggested we bring her through the E.R. She has been having bad headaches and SM (Syringomyelia) pain. I think Dr. Frim wants her to have an MRI (Cine) and Shunt series x-rays. We are not really looking forward to going back to the hospital (especially Kara), but we need her checked out...since she has not done as well as she did before the car accident. We still do not have our car out of the shop yet, so David's parents are letting us borrow their car for the trip. Pray we will have a safe trip and that all will go well for Kara. Hope everyone had a wonderful Christmas!

David & Sherri

Thursday, December 23, 2004 7:40 AM CST

Our plans keep changing.....but for right now we are planning on taking Kara to Chicago on Dec. 26th. Dr. Frim wants us to bring her through the E.R., so they can run some tests on her (shunt x-rays, MRI's). We couldn't get an appt., so we have to do it this way. We are supposed to get our car back this evening (since the accident Nov.29th), but with all the snow we just got...I'm not sure that will happen and we need the car to go to Chicago. So...we'll have to see what happens.
Hope everyone has a Happy Holiday!

David & Sherri

Tuesday, December 21, 2004 1:14 PM CST

Kara is still having bad headaches and her SM pain is acting up too (she was up at 5:00 am with pain). Dr. Frim wanted us to come to Chicago on Dec. 23rd, but we won't be able to make that trip because David can't get out of work and we still do not have our car back from the shop since our car accident on Nov. 29th!

Dr. Frim had us call Dr. Luciano at the Cleveland Clinic to see if he could see Kara, but he is out of the office until Jan. So.....Dr. Frim's office faxed orders over to the Cleveland Clinic so that Kara can have a shunt series of x-rays and an MRI & Cine MRI done there. We are waiting for the Cleveland Clinic to call us back, so they can tell us when to come for the tests. After these tests are finished we will get copies of them and mail them to Dr. Frim in Chicago, so that he can look them over. We will let you know what Dr. Frim has to say. Hope everyone has a Wonderful Christmas!!

Sherri & David

Friday, December 17, 2004 8:45 AM CST

Kara still seems to be struggling with headaches. She missed school yesterday and today because of the pain (she rates the pain an "8" or "9" at times). We feel that the headaches have been worse since the car accident. Of course her shunt was adjusted this past Monday, so not sure if that has anything to do with it. We have been in contact with Dr. Frim and he mentioned that he may want to see her soon. He thinks she may need an MRI, but we were checking with him to see if she could have it done closer to home and then sent to him. We'll let you know what he thinks would be best. Keep Kara in your prayers. Thanks,

David & Sherri

Monday, December 13, 2004 7:53 PM CST

Hi,

Kara had her appointment at the Cleveland Clinic. Dr. Luciano said that he was surprised to see her functioning so well with her shunt set at 30 and that she wasn't in more pain. The doctor wanted to move the shunt setting by 20 instead of by 10, so he moved her from 30 up to 50. He also checked her incision and thought it looked very good! He will see her in one month, so that he can move her shunt up again. Hopefully the headaches that she has been having will begin to decrease as her shunt starts to drain less. We are very blessed that she has been doing so well!

David & Sherri

Saturday, December 11, 2004 1:56 PM CST

Hi,

Kara continues to do pretty well. She is still having some problems with headaches, but that could have to do with her shunt draining so heavily. We will be heading to the Cleveland Clinic on Monday for an appointment with Dr. Luciano....he will begin to adjust her shunt. Kara has also had a few problems with the Syringomyelia which affects her ribs, shoulder and arm and causes her pain. Other than that she has been very busy with school and her other activities. She continues to remain positive and usually always has a smile! Thanks again for all the prayers. We will update on Monday after we get back from the Cleveland Clinic.

Sherri & David

Tuesday, December 7, 2004 4:04 PM CST

Hi,

Kara is back into the full swing of things! School, guitar practice, wrestling stats & attending cheer practice. She's been doing good, but has had some trouble with her headaches again. They've been about a "7" lately, so she takes advil and then they subside. About two days ago she had a bad bout with the Syringomyelia (SM). Her ribs were hurting so bad, so she again took advil and used a heating pad and in time the pain went away. Kara's been dealing with chronic pain for almost 4 years now and it's still hard as parents to see her go through it. It doesn't get any easier, but Kara is strong and she's resilient and she just keeps moving forward.

Kara will see Dr. Luciano at the Cleveland Clinic this coming Monday, December 13th, so that he can adjust her shunt. Her follow up appointment with Dr. Frim in Chicago will be on February 10th. She will have a MRI and then a check up.

Thanks,
Sherri & David

Friday, December 3, 2004 7:36 AM CST

Hi,

So far Kara seems to be doing alright since the car accident. She has had a headache since then, but it's been about a "4". Her lower back was hurting, but that seems to have went away. Dr. Frim had us watch her and make sure there wasn't any swelling and so far the inicsion area looks fine (still scabbing though). I finally got her an appointment in Cleveland to see Dr. Mark Luciano at the Cleveland Clinic for December 13th, he'll be able to check her out and begin to adjust her shunt each month. Her shunt is draining very hard right now and it's at "30", so she will probably be moved to "40". It has to be moved slowly so that the brain has time to adjust that's why it cannot be moved up quickly. Her setting had been at "110" before surgery, so it will take some time to get it adjusted back up. We're very thankful that Kara is still doing well even though she was in a car accident. Thanks so much for the prayers...God continues to answer them!

Sherri

Tuesday, November 30, 2004 2:41 PM CST

Hi,

Kara and I got into a car accident yesterday evening. We got hit pretty hard. Kara was sitting in the front passenger seat and that's the side of the car that got hit, but more toward the front of the car. I was so scared for Kara! All I could think of was how she is only 4 weeks post op and how she has sutures inside of her head and I don't want her to start leaking on the inside. She complained of her lower back and her head hurting. I emailed Dr. Frim's office and they said to keep a close eye on her and to make sure that no swelling appears near her surgical sight and to look for any dizziness, headache or fatigue, so I'm watching her closely. Today she said that her back felt okay, but that her head was still hurting. Our car isn't driveable, but that can be fixed! Please continue to keep Kara in your prayers.

Sherri

Sunday, November 28, 2004 2:21 PM CST

Hi,

Kara is still doing well, but she does have a bad head cold today and it's making her head hurt pretty bad. She just took some Tylenol Sinus and is going to try to lay down for awhile to see if that helps. I hope she can make it to school tomorrow, since I have to return to work myself. We are waiting to get an appointment with a neurosurgeon in Cleveland, so that Kara's shunt can began to be moved up in order for it to drain less fluid from her brain. She is set at "30" right now and before surgery she was at "110". Her shunt can only be moved up by increments of "10" each month, so it will take awhile to get back up and I know she will feel even better not to have her spinal fluid being drained so heavily away from her brain. It has been almost 3 weeks since her antibiotics have been stopped and so far she is doing good and there are no signs of infection (thank the Lord)! Keep her in your prayers!

Sherri

Friday, November 26, 2004 9:10 AM CST

Hi,

The doctor's appointments went well this morning. Kara had some of the ends of her disolvable sutures cut off today. She still has alot of scabbing, so the doctor told us to put some peroxide on them and maybe that would help to release some of the scabbing. He also said that her scar looked better than last week, so that is good! She has been having a few headaches, but not too bad.

The doctor wants David to have a stress test done, but thinks it will come out fine. He thinks it is just stress that has been causing his symptoms.

Thanks for your prayers! We will update again soon!

Sherri

Friday, November 26, 2004 7:25 AM CST

Hi,

Kara and David both have a doctor's appointment this morning, so I will post later on how that goes! I hope everyone had a great Thanksgiving...I know that our family did!

Take care, Sherri

Wednesday, November 24, 2004 8:25 AM CST

Hi,

David is home from the hospital! The doctors think it was stress related and he actually returned to work today! He has an appt. this Friday to see the doctor again and it just so happens to be at the same time Kara has an appt. to have her incision checked, so that works out good!

Kara is doing very well! She is hardly in any pain at all! In fact she didn't even have a headache yesterday!! We haven't had this happen in almost 4 years! We just thank the Lord for how well she is doing! Like I said before...we have alot to be thankful for this Thanksgiving!! Thanks to everyone who has been praying for Kara and David too! We really appreciate it! We will update again soon!

Sherri

Tuesday, November 23, 2004 3:29 PM CST

Hi,

David is still in the hospital and hasn't been released yet! I guess they are still running tests! We are both pretty tired of hospitals right now! I am hoping that he will get released tonight. I'll let you know!

Kara is still doing well!!

Thanks, Sherri

Tuesday, November 23, 2004 5:52 AM CST

Hi,

David is still in the hospital. For right now...I think the doctors are thinking that it is stress related. I'm on my way to the hospital this morning, so I will let you know more later. Hopefully he will got out of the hospital today!

Kara continues to do well, so that's really good!! We have alot to be thankful to God for this Thanksgiving!!

For those of you who have emailed me, I'm having some computer trouble and can't email back for some reason (sorry).

Thanks,
Sherri

Monday, November 22, 2004 12:41 AM CST

Hi everyone,

This update is actually about David. He has been having chest pains off and on over the weekend and this morning he had them pretty bad and then started vomitting with them and that had me concerned. He then asked me to take him to the E.R.....so I did! They have admitted him and they are running tests on him. They were concerned because they gave him 3 nitro pills and then the pain started to go away and that could indicate some blockage. The doctor said that David's "ekg" turned out fine and that they will continue to check his blood and possibly do a stress test on him. The doctor seemed pretty positive that it wasn't a heart attack or anything. If I think back to when Kara had her first brain surgery almost 4 years ago....David had chest pains and I had to take him to the hospital at that time too, so maybe this is just his body's way of dealing with all the stress of what his daughter just went through again.

I will update later and hopefully David will be out of the hospital tomorrow!! By the way...Kara is still doing well!

Keep David in your prayers!

Sherri

Sunday, November 21, 2004 2:15 PM CST

Hi,

Sorry we haven't updated in a few days. Kara is still doing well. She has been troubled with some headahces in the morning, but after she takes Advil they seem to go away. She still isn't getting enough rest and maybe that is contributing to it. The headaches are not as bad as they used to be in the past 4 years and at times she says that they are only a "1" on a pain scale of "1-10". The fact that her shunt is still draining very hard could cause headaches as well. She won't start to get her shunt adjusted until December 9th. She also has an appt. with Dr. Lockhart again this coming Friday, so that he can check her incision again. There is still alot of scabbing on it. Other than that, she is glad to be home and is trying to get caught up on her school work. She has been getting tutored about 2 hours a day.

We will update again soon. Thanks for the continued prayers!

Sherri & David

Thursday, November 18, 2004 12:35 AM CST

Hi,

Kara continues to do well. Her pain levels have decreased alot and she is very happy about that! She is enjoying each day and is getting ready to be tutored for school. She hopes to go back to school in another week or so.

David and I are so proud of Kara. Throughout all of this she has continued to show her strong faith, her courage and her optimistic attitude! She amazes us!!

Dr. Lockhart checked her incision today and thought it looked good. There is still quite a bit of scabbing, so he wants to see her in one more week to check it again. She will also see her neurosurgeon in Cleveland on Dec. 9th, so that her shunt can start to slowly be moved up so that the draining is decreased. She will have to do this once a month for awhile. She will see Dr. Frim in three months for an MRI and a check up.

Thanks again for your continued prayers and support!

Sherri & David

Tuesday, November 16, 2004 8:51 AM CST

Hi,

Kara is still doing pretty good. She woke up early this morning with a bad headache, but she just finished up taking her steroids and Dr. Frim said that she might get bad headaches for awhile after the steroids were stopped.

Kara has an appointment this Thurs. with her local doctor to have her incision checked to make sure everything looks fine. We will let you know how that goes.

Thank you for your continued support!

David & Sherri

Saturday, November 13, 2004 10:26 AM CST

Hi,

Kara continues to do well! She is only occasionally bothered by headaches, but her shunt is draining very hard and that will cause low pressure headaches (for instance she was set on 110 and now she is set on 30). She has an appt. in one week to see our family doctor so that he can check her incision. She also has an appointment to see her neurosurgeon in Cleveland in one month, so that her shunt can start to be moved up by 10 each month. We will also take Kara back to Chicago for an MRI and follow up appt. in 3 months. Dr. Frim gave her strict orders not to lift or being doing too much for the next three months until he sees her again!

We are so happy that Kara is doing good and we know that it is answer to prayer....God is Good!!!

David & Sherri

Thursday, November 11, 2004 9:10 PM CST

To All:

We have just returned from Chicago several hours earlier tonight. We are very happy to finally be home and to see Kyle. If Kara sits or stands too long her head hurts very bad from low pressure so she has to lay down, this is due to her shunt draining so much. Other than that she appears to be doing well her first night home. We are very happy to be home, Sherri did not leave Kara's side or room the whole time we were there, she is a very good Mother.
We will keep praying that Kara will not have any other problems. Since Kara has not slept very much at the hospital or the Ronald McDonald house we are hoping she can get some rest now that she is home. Thanks again for all your kind postings for Kara.
-David

Wednesday, November 10, 2004 10:09 AM CST

Hi,

More good news!!!!! Kara got released over to the Ronald McDonald House! She continues to do well (only some headaches to deal with, but not too bad)!!!

Dr. Frim wants to see Kara in his clinic tomorrow morning, so we'll let you know what he has to say! We have been here for 23 days and Kara is so anxious to get home and so are we!! We miss Kyle so much and can't wait to see him!!

We are so proud of Kara...with all she has been through she still continues to smile!! Kara wanted to share some verses that helped her through her last surgery......

Psalm 107:19-21 & Philippians 4:13

Thanks again for all your prayers and support...it has really helped us alot!

David & Sherri

Tuesday, November 9, 2004 6:38 AM CST

Hi,

Kara continues to do well!! We are so pleased, what a relief!! Her incision is holding up!!

Please pray that there will be no shunt infection. The doctors have stopped the antibiotics and if an infection shows up then Kara would have to have another surgery to remove her shunt and then temporary drains put in and then days later another surgery to have the shunt put back in. We are continuing to strongly trust in the Lord that he will bring Kara complete healing!

Thanks to everyone for the continued prayer and for supporting us so much. Your words of encouragement have meant so much to us! Miss you all!

David & Sherri

Monday, November 8, 2004 3:27 PM CST

Dr. Frim came in to see Kara. He feels that she should stop the antibiotics, but Dr. Dom (infectious disease) feels that if there is a shunt infection she should stay on them. Dr. Frim feels that if there is bacteria in the shunt it will end up showing up on down the road. The way we would know it was infected is if Kara would start getting very sick. Dr. Frim said if she made it to Christmas without getting sick, she should be in the clear. We will continue to believe through our prayers that there will be no infection.

Dr. Frim checked her incision and thinks it still looks fine, if Kara's incision looks good and she keeps progressing we should be home by the weekend.

-David

Monday, November 8, 2004 6:46 AM CST

Hi,

Kara had a good day yesterday. Only headaches to deal with. We are waiting for Dr. Frim to come in and check Kara's incision and give us more information. Today is day 20 and Kara cannot wait to come home!! We will let you know what Dr. Frim has to say later.

Sherri

Sunday, November 7, 2004 9:09 AM CST

Hi...

Nothing too much different to report today. Kara is still doing so much better! Still having headaches, but she takes motrin or demerol for them and that seems to help. She just can't wait to get out of the hospital!!!! She cried quite a bit last night after talking to her brother Kyle on the phone because she is so homesick (Today is day 19).

One of Dr. Frim's assistants came in this morning and said that her incision looks good and so does the lumbar drain area. They are giving her a new antibiotic called oxycillin (not sure of the spelling). They were a little concerned because Kara has a penicillin allergy and oxycillin is related to penicillin, but she is doing just fine on it!

David had to fly back to Ohio to work for a few days and then he is flying back. He is glad that he will be able to see Kyle (I miss Kyle sooo much and feel so bad that he has been without us). He has been staying with the Kerchinske family this whole time and we're grateful to them for allowing Kyle to stay with them for so long (I'm sure they didn't think it would be this long)!!

The Cavanaugh family from Michigan (their son Brett had surgery two days after Kara's Oct. 20th surgery), drove 3 hours to visit with us yesterday. It was so good to see them again and so nice of them to take the time to come back and see Kara. Mrs. Fosse and her friend Dave came back yesterday morning to tell Kara goodbye before they left.

I will try to update later if anything new arises. We are just thanking the Lord that Kara is progessing so well. Again, Thanks for all of the prayers and support!

Sherri

Saturday, November 6, 2004 9:39 AM CST

Hi,

Kara is doing pretty good. Still having trouble with headaches right now. She just took some demerol, so that should help. She will be receiving her last dose of antibiotics today. She is very homesick right now!! I know that we will still be here until at least Thursday, because Dr. Frim wants to see her in the clinic that day.

So far her wound looks good. Please pray that the incision stays in tact and does not open back up.

If we hear anything new...we will update later. It's the weekend, so we might night hear anything for now. Once again thanks for all the prayers and support! We appreciate it so much!!

Sherri & David

Friday, November 5, 2004 7:46 PM CST

Hi,

It seems like the plan of action for Kara changes more than once a day. Dr. Frim and the infectous disease drs. are going to back off of the antibiotics soon and just wait to see if Kara shows any signs of illness from infection, instead of going ahead and having her shunt removed. Her white blood cell count droppd down again to about 1500, so that is good. The drs. are just a little bit concerned about the fact that there was or is an infection even though she has been on the strongest antibiotics. Dr. Frim thinks that there is less than a 50% chance that her shunt is infected. I guess sometimes a shunt infection can show up weeks or months later, so they want to be careful. Dr. Frim contacted Dr. Lechner (Kara's neurosurgeon in Cleveland who put in her shunt), so that she is aware of this for when we are home.

Kara is doing well. Her lumbar drain was removed and she had to lay flat for an hour or so. She still had trouble with some headaches today, but overall she is doing good!

Kara's grandmothers and grandfather came to see her yesterday! She was soooo happy to see them and it was hard to say goodbye when they left to go back home to Ohio.

Today, one of Kara's teachers from last year (Mrs. Fosse)and her friend Dave came to see Kara! It was a very nice visit and Kara was happy to see them. They brought Kara alot of treats and alot of cards and notes from Kara's fellow students (and other teachers)! Kara really enjoyed reading them all.

We will update tomorrow. We are still trusting the Lord for a positive outcome for Kara!! Psalm 112:7

Sherri & David

Friday, November 5, 2004 10:19 AM CST

Dr. Frim just came to see Kara. He told us that they are still wondering if there is an infection in Kara's shunt and they want to make sure about it (her white count came down a bit more, but they must still be concerned about it).......so they want to reduce the amount of antibiotics in the next few days and then tap her shunt (put a needle in the top part of her head and draw fluid out of it). We are praying for NO infection to be found. We Don't want Kara to go through another surgery!!!! I know that sometimes tapping a shunt can cause infection itself, but Dr. Frim wants to be pro-active on this and not wait around to see if Kara gets sick.

On another note...Kara is doing well!!! She is off of the PCA pain pump and will only take pain meds by mouth. Her IV fluids have been disconnected as well and her lumbar drain is supposed to come out later today! We are very happy about the progess she is making!!!

Kara is feeling a little down about the news of having her shunt tapped, so say a prayer for her. She is homesick and can't wait to come home! Dr. Frim mentioned to me that we will still be here on Thursday. I think we are on day 17 right now! We miss everyone back home!!

Thanks for all the prayers and support! You are all so great and we appreciate your care and concern!!

Sherri

Thursday, November 4, 2004 9:12 PM CST

Hi,

Kara is still in step down...gosh she's hoping to get moved to the regular floor soon.

The lumbar drain is still clamped off. This is a crucial time of waiting to make sure that Kara's incision does not open back up! We are praying very hard that it won't and that it will heal completely! Please pray that this goes well. The doctors are thinking about changing the antibiotics around tomorrow. We will let you know more tomorrow morning. Take care,

Sherri

Thursday, November 4, 2004 11:20 AM CST

Hi,

Kara is still in step down. She had a bad headahce early this morning, but is doing a bit better now. Her lumbar drain has been clamped off. She is allowed to stand up today and maybe try to walk....of course she'll have to drag around her lumbar drain and IV pole, but she doesn't mind. We are trying to get her to drink more because her blood pressure was a little low and she hasn't been too interested in drinking or eating! Dr. Frim still thinks that her vp shunt will not have to be removed (thank God), and that she had chemical meningitis. She is still on two powerful antibiotics! The infectous disease doctors told us that so far no bacteria has grown and as of yesterday her blood count had dropped in half. They haven't told us what the white count is for today yet, but we are thinking positive! We will update later if we can get to a computer.
Thanks for all of your prayers. We are still trusting in our Lord for a good outcome to all of this.

Sherri

Wednesday, November 3, 2004 9:40 PM CST

Dr. Frim came in the room tonight and told us that the night Kara was in such pain, was because some blood got in her spinal fluid and she had chemical meningitus. He said that the steriods she is on appears to be working. They are starting to lower the doses of demerol that she is taking. He said that later tomorrow they were going to clamp off the lumbar drain, to see what happens. Once the drain is out she will be sent finally up to the regular floor away from the PICU stepdown. (I was not in the room so hopefully I am conveying everything Sherri told me correctly)On the regular floor we will have access to a computer and be able to post better. Hopefully what I wrote doesn't change.
Thanks for the continual prayers we know that is the reason why things are going better.
-David

Wednesday, November 3, 2004 4:27 PM CST

Hi,

Kara didn't make it out of step down yet. Dr. Frim wanted to give it more time. The infectous disease drs. told us that with the infection that Kara has it could mean that they would have to remove her shunt. But the neurosurgery doctor said that she was pleased because Kara's white blood cell count dropped in half today compared to yesterday. I think it was 670 yesterday and it is now 330. Neuro thinks she may have chemical meningitis...which is not to be confused with viral or bacterial meningitis. Chemical meningitis can happen from having brain surgery done and then inflammation can occur from that. They feel the steroids are helping that and also the 3rd antibiotic that was added along with the Vanco that was increased.

Kara is doing well and is just tired from lying in bed for a week. She's stuck in bed because of the lumbar drain right now. She is just complaining about her incision being sore and hurting. Lisa Stringer came by for a visit today and that was so sweet of her!! We were glad to see her again!

We will update if we hear anything new!

Sherri

Wednesday, November 3, 2004 8:36 AM CST

Hi,

Judy from neurosurgery just came in and took a look at Kara (she's still sleeping)...and then asked us if we wouuld like to move out of step down!!!!!!!!!!!! Then she said that the cultures that she just looked at....so far are Negative!!!!!!!!! David and I got so excited. She of course said..."well, cultures can change alot, so don't get too excited! We are just so glad to hear this and of course thanking our Lord!! Judy said that she hadn't looked at Kara's blood work yet either, but David and I are pretty happy right now! We will post later! Thanks for all the prayers...God certainly hears them!

Sherri

Wednesday, November 3, 2004 8:04 AM CST

Good Morning,

Kara had a much better night. She is more herself too! We will probably find out more today on the fact that they think there is an infection. They drew blood this morning to check Kara's white count. We haven't talked to Dr. Frim yet, so we will let you know more later! We are still praying hard against infection.

Sherri

Tuesday, November 2, 2004 6:43 PM CST

Hi,

We should know the results tomorrow about the infection. Dr. Frim came in and seen the pain Kara was in and put her back on steriods to help with the pain, it helped alot. They removed her Jackson Pratt drain also this afternoon, she has ate some today. We certainly have been on a roller coaster ride with her. Hopefully when we post tomorrow it will be consistant with rtoday, where she is showing progress. Please keep praying against the infection, the infectious disease doctors said that sometimes when the white counts are high after a surgery and you have hardware in you like Kara's shunt, you can get an infection in the shunt. If this was the case they would remove the shunt put in a temporary shunt and run antibotics until it was gone, then replace the shunt. We are praying that this is not the case and that a third antibotic will take care of it.

Thanks-David

Tuesday, November 2, 2004 11:48 AM CST

Hi.....more news. An infectous disease doctor just came into Kara's room to report that Kara's spinal fluid has an infection in it. Her white blood cell count is suppose to be in the single digits like...2,3 or 4 and Kara's is 320. They are going to start another antibiotic besides the other two that she is on. They think it could be an infection in her shunt, since she is not showing other signs of fever or vomitting etc. Her counts yesterday were fine. Please pray along with us against this infection!!!

She is also still experiencing alot of low pressure pain. It was hard to see her yell and moan all night long! It tears at a mother's heart!! But...once again we will keep trusting in the Lord. We will update later.

Thanks for more prayer!!!

Sherri

Tuesday, November 2, 2004 8:20 AM CST

Kara had a very rough night, she woke up at around 12:45 am this morning in terrible pain, she said her pain was over a ten and could not stand it, they tried as much different medications as they could, the took her down for a CT scan, it showed her ventricles small, she has such low pressure from the excessive draining. Around 4:30 am she fell asleep, at 7:30 she woke up in terrible pain again with the same ten headache all over again, they tried moving her bed, bendryl, motrin, tylenol and her demerol. Dr. Frim said that they were to start backing off on the lumbar drain today,which will help the extreme head pain. They just drew blood to see if she is deficient in sodium that could be tied in to some of the pain. (Sherri is beter at explaining everything correctly) We feel so bad for Kara, seeing her in pain. We pray that this was the worst night and everything gets better from this point on. She started to calm down so I came up here to post, like always please keep her in your prayers.
David

Monday, November 1, 2004 6:31 PM CST

Kara had a better day today than she did yesterday. There have been a few times that her pain has gotten out of hand, but she manages to get through it, even though they are trying to decrease her pain medication. She still cannot get out of bed because of the lumbar drain and her bed is at a 40 degree angle and that has not been moved since she came out of surgery. She has certainly drained alot of CSF from her lumbar drain! David and I got to see her scar this evening because the nurse tried to change part of her dressing. Boy...does it look like it hurts!! Much different from the previous surgery scar on Oct. 20th. Alot of double stitching and so. We're hoping she has a good night tonight!! Thanks for all of your prayers! We are definitely homesick at this point!! We will update tomorrow!

Sherri

Monday, November 1, 2004 7:03 AM CST

Hi,

Kara is still in step down. She had a rough day, but then in the evening we started to see signs of our Kara coming back. My very good friend Wendy and her daughter Jessica from Ohio came to see us. That seemed to have helped Kara. She smiled and started to wake up more. She then ate something (Yeah!!). She actually ate chinese food that we ordered!! She also tried to watch a movie from the child life center!! We were so happy to see this!!!!!!!

One problem that she started having was some anxiety attacks (which she has never had before). The anxiety got pretty bad for her, so they gave her benadryl. They think that happened because of the high amount of demerol and all the stress her body has been through (2 brain surgeries within 9 days). She got into some terrible pain around 4:00 am and it was hard to see her like that again, but she was given benadryl and that helped to ease some of her pain. She is having some trouble with her catheter and so that is going to come out today. The wrap was just taken off of her head this morning. Thank God...she is starting to make some progress!!!

On Sunday her best friend Erin McGarvey and her parents drove out to see Kara and brought our son Kyle! It was sooo good to see familiar faces and we have missed our Kyle so much! It was hard to see them leave!! It's very hard to be separated from Kyle!!

I want to thank all of our family and friends for all of your support! It helps us so much! Thanks for all of the prayers! Thanks to all of the ASAP friends...we appreciate all your care and concern and we know that you all care in your own way (once again we appreciate that)!!

We are continuing to look to our Lord for Kara's complete healing!! One of Kara's favorite verses is Jeremiah 29:11. That verse has been what she has been holding onto since her surgeries in New York. Her friend Brett Cavanaugh from Michigan (who just left Chicago from having his own decompression surgery) gave Kara a "Wow" CD and when Kara opened it up....he had written the verse from Jeremiah 29:11 (without knowing how important that verse has been to her)!! She started to tear up on that one!!

We will update later! Love to all!

Sherri

Sunday, October 31, 2004 7:28 AM CST

Hi,

Kara has been moved to the step down unit. She is still in alot of pain and is taking alot of demerol, so she's not too alert. She has been vomitting alot and is very weak and shaky. She has not had anything to eat in the last two days, but maybe a total of 2 saltine crackers. They tried to give her toradol, but she ended up getting hives, so this is something new to add to the list of her allergies. She's so sensitive.

They are still draining her spinal fluid very heavily since surgery to help the area to seal off...so it won't leak again. Please continue to pray for her pain to ease. It's very hard as parents to sit and watch her like this. We would like to see some of our old Kara come back soon!! We'd like to see that smile again!!

We will update later. We are still trusting in the Lord to bring her through this!

David & Sherri

Saturday, October 30, 2004 1:16 PM CDT

To All:

Just wanted to give a quick update, since they are draining Kara's shunt on a low setting, have the Jackson-Pratt and lumbar drain all in removing fluid, Kara is in pain from the low pressure she is experiencing. In past surgeries she hardly uses the pca pump for pain medicine, as of this morning she has used it 27 times since they hooked it up after the surgery. She can press it every 8 minutes, they have now increased the dose and put it to every 10 minutes. The Doctor said the next couple days may be similar. They have to keep the excessive draining to make sure she doesn't leak, so he said as long as she is in the pain she is and the doses of medicine she is on, they will keep her where she is at in intensive care. So please continue to pray for Kara and our family, it is very hard to see your child in pain and not be able to do anything about it. Sherri and I are also not able to sleep where she is at, so we are somewhat tired from the last couple of days of trying to dose in the PICU waiting area when we can.
Again, like always we appreciate your prayers. This webpage is a great way to communicate to our family and friends.
Will keep you posted, there are no computers in the intensive care, so Sherri posted from someones room and I had to wait until the child life room opened at 1pm.
David

Saturday, October 30, 2004 9:53 AM CDT

Hi,

Kara is still in ICU. She is in alot of pain! We will try to post later. Keep her in your prayers and that her pain will ease! Thanks for all of your support....it means so much!!

Sherri

Friday, October 29, 2004 8:27 PM CDT

To All:

Kara is in the PICU, the surgery itself lasted for a couple hours, but it took an additional 3 hours before we could see her. (It was very hard to wait to see her)They are trying to not use as much pain killer with her, and have been giving her smaller doses due to her past problems. Dr. Frim told us that her shunt appears to be working as of now, he found a small pin hole leak which they resewn. He also said the muscle was not attached to the bone and it was causing a big space for a collection of fluid from the leak. He said that this could have been caused by all the past leaks and/or multiple surgeries. They have put a Jackson-Pratt drain in at her neck again and a lumber drain in at her lower spine. We asked how long this will be in and he said as long as it takes to keep the fluid from the area so she can heal. So as of now we are unclear on how long she will be here. Again, like always please keep Kara in your prayers. She is in pain and is uncomfortable, especially since having surgery twice in the last nine days. We would like to thank everyone for the kind emails, posting and prayers.
We will keep you posted.
David

Friday, October 29, 2004 11:52 AM CDT

Hi,

Kara was just taken back to surgery about 15 minutes ago. She was still very strong and was actually asking me not to cry! David and I thought we would have to face this alone, because Kyle and the two grandmothers went home days ago. Then we met a family last week (Kellie & Bob Cavanaugh and their 15 yr. old son Brett) from Michigan....Brett had Chiari decompression surgery two days after Kara. They were to go home this morning and instead stayed with us. They are with us now in the surgery waiting room! What a blessing they have been to us!! Another family (The Richardson's from Texas are here with their 5 yr. old daughter Adia...who had decompression surgery two days ago), Walter Richardson came down and is waiting with us too! We are still praying and trusting the Lord that all will go well. We will update you all soon!

Love, Sherri

Friday, October 29, 2004 9:20 AM CDT

okay....

They are getting ready to take Kara down to surgery pretty soon! Please keep praying hard for our girl!! She will have a lumbar drain in after surgery and she will be in the ICU. We need prayer for strength. Right now my tears are flowing. We will keep trusting in the Lord!!

Sherri

Friday, October 29, 2004 7:45 AM CDT

The plan for Kara right now is that the doctors are going to do emergency surgery. They feel that her shunt is working, so they are going to do surgery to clean out her wound because of the infection and check to see how things look in there, or to see where the leak is coming from. Our dear Kara will end up in the ICU again. The process will once again start over. This will be her 8th surgery and it doesn't get any easier on Kara, David, myself, or Kyle. It's hard, no doubt about that. Our trust remains in the Lord. We will update later.

David & Sherri

Friday, October 29, 2004 0:37 AM CDT

To All:

At 11:30 PM Cleveland time, Kara told us she felt something leaking again from the back of her head. Our nurse called Dr. Frim our Neurosurgeon, he came and verified that she was leaking from the Jackson-Pratt stitched area again, and that her head has some swelling of fluid under her skin. He said possibly the shunt is not working, so they adjusted the shunt from 50 to 30 (she had been at 110) to take the fluid out of her head more aggressively. They then x-rayed her in the room to make sure the adjustment was correct. Then they took her downstairs for a CT scan of her head to look at the size of her ventricles to make sure that the shunt is working.

As of now Dr. Frim has tentatively scheduled Kara for a shunt surgery tomorrow morning. They will check her head first thing in the morning, if the swelling has went away then the shunt is working, if not, they will have to go in to replace the shunt. Tonight she will have to sleep sitting upright, and they also will not have to restitch the area, he feels its high pressure and when the pressure is eliminated the leak will stop. So please pray for Kara that she will not need to have another surgery in the morning and continue to pray against infection. We will know more in the morning,
Thanks.
David

Thursday, October 28, 2004 7:54 AM CDT

The resident doctors came in this morning to check on Kara. They did confirm that there is some bacteria growing on her cultures. They said that today they should have a name for what kind of bacteria it is, so that they can continue to treat it properly. They are hoping that it is not meningitis and that it is something superficial and we are praying against it being something major. So far Kara is not sick, so that is good. She is still experiencing headaches, but she is able to tolerate them. When the pain gets too bad she takes Motrin or a half pill of her percocet.

They checked her incision and the jackson-pratt area that they put three stitches in remains in tact! They will come back later today and give us more info on the treatment plan for Kara. Thanks to all of our family friends and to our ASAP BB friends for all of your love and concern, we deeply appreciate it! Love you all!

We are continuing to pray that the infection is nothing serious and we will continue to trust in the Lord! He will see Kara through this, just like He has done in the past. We will post later today!

David & Sherri

Wednesday, October 27, 2004 8:35 PM CDT

HI,

Dr. Frim came in tonight and said that there is some bacteria that has showed up on the cultures that they did yesterday. Kara is on two antibiotics right now and that should cover any infection. He also said that Kara will probably remain in the hospital until at least Friday. He is going to check with the infectious disease doctor to see if there are antibiotics in pill form that she can be sent home on. He wants her incision to be checked in one week after we leave here. So far the jackson-pratt area that was stitched still looks good and is intact (thank the Lord), and Kara is not sick, so that is good news. Her headaches from the shunt adjustment have been pretty tolerable. She is getting really tired of being in the hospital at this point, but is hanging in there!! Continue to pray against any infection.

Thanks,

David & Sherri

Wednesday, October 27, 2004 12:11 AM CDT

Hi,

We had to bring Kara back to Chicago. She was admitted through the E.R. last night. The jackson-pratt drain area was leaking (the surgery incision was okay). She then had numbing shots put into the back of her head and the jp drain area was scraped and then 3 stitches were put in. There was alot of fluid that came out of that area before the stitches were put in and it soaked the top part of her hospital gown. Some cultures were done to make sure that there is not any infection going on and those results won't be back for a few days. Kara was sent up to a room and she is on IV antibiotics. Her shunt was lowered from 110 to 50, so that the fluid will drain away from her brain, so that area can have time to heal, of course this can cause low pressure headaches real bad.

Kara's spirits are better than yesterday. As all of you know....she's so very strong!! David and I are amazed by her all the time. We are not sure how long she will be in the hospital yet. We are still trusting in the Lord and we know that He will see Kara through this! Keep her in your prayers!! Thanks for all of your support! And a special thanks to Paul for his support!!

Sherri

Tuesday, October 26, 2004 10:34 AM CDT

Well.......

We are on our way back to Chicago this morning! Kara's incision is leaking from where the jackson-pratt was. Dr. Frim wants us to return and put Kara on IV antibiotics and maybe even a lumbar drain (hoping not). He wants to check her incision and see if it needs re-stitched. Please Pray against any infection.

Kara is crying very, very hard and is very emotional and upset at this time and is having a hard time calming down. Please, please pray hard for her and that this will all work out. Pray for our trip back to Chicago.

Thanks, Sherri

Tuesday, October 26, 2004 9:18 AM CDT

Kara just woke up this morning and her incision is leaking fluid. We're waiting for Dr. Frim to call us back right now. Keep praying because Kara is very upset about this.

Thanks, Sherri

Monday, October 25, 2004 4:39 PM CDT

Hi Everyone,

Kara was discharged yesterday from the hospital (10/24/04). We had to stay one more night at the Ronald McDonald House. We made it home today!! We are continuing to thank the Lord that everything turned out so well for Kara!! She has come through this so well. She is still experiencing pain and stiffness and some general weakness from the surgery, but we're sure that it will get better as the days go by! We can't say enough good about The Univeristy of Chicago Children's Hospital....the care that was given to Kara was excellent!! Of course, Dr. Frim was just outstanding!! Kara will get her stitches out in about one week and she is not allowed to lift anything for awhile and she's not allowed to do too much for 3 months (which may be difficult for Kara)! Once again...thanks for all your prayers because God sure answered them all!

Also a "Big" "Thank You" to Laura Kane who flew to Chicago from New York just to be with Kara! I feel she helped Kara to get better and was such a huge help! Kara just loved her being there! Thanks to Lisa and Kevin Stringer who came and visited with Kara and helped us out too!

Saturday, October 23, 2004 6:42 PM CDT

Kara got her jackson pratt drain out this afternoon and it was only a little bit uncomfortable for her and boy is she relieved that it's out!!! That kept worrying her.

Dr. Frim came in and talked to us and explained that he could not remove the top part of her bovine patch because it is so scarred to her brain and has actually become part of her brain, he could not remove that part because it could have caused injury to her brain. He was able to remove and replace the bottom part of the bovine with Kara's own tissue. Her brain tonsils were scarred and stuck together where they shouldn't have been and they were blocking Kara's 4th ventricle. Dr. Frim got those apart and placed back and that unblocked the ventricle. The bovine patch was folded and pressing into her brain, so that was why she had been in so much pain. The bovine was replaced with Kara's own tissue. Dr. Frim told us that he has not seen anyone's patch look the way that Kara's did. He said it was bizarre looking (He took quite a few pictures). I guess the previous patch that was placed was too large and that's why it folded and it folded at the worse possible place. The anesthesiologist said that it was just a mess in there (Kara's head).

So...we thank God that Dr. Frim was able to help fix Kara's head back up!! He has been a blessing and is a wonderful neurosurgeon! Thanks for all the prayers.

Sherri & David

Saturday, October 23, 2004 8:37 AM CDT

Hi,

Kara had a pretty good night again. She only had a little trouble sleeping again and was in some pain. She said the back of her head and the back sides of her head are hurting. She's been complaining about her left hand being numb since she came out of surgery, so we'll check with Dr. Frim on that. Hopefully her jackson pratt drain will be coming out today too (she's very, very nervous about it).

Kyle is leaving today, so we're sad about that. Laura Kane is leaving as well, she has been such a big help to Kara!! We'll post later after we talk to Dr. Frim.

Sherri & David

Friday, October 22, 2004 4:33 PM CDT

Hi,

Kara just got out of the ICU and she is in a regular room. She had a bad day with pain yesterday, but is doing better today. She has really come through this so well!! We give the honor and glory for her doing so good to the Lord!!

The only thing that Kara is really nervous about is getting her Jackson-Pratt drain out of the back of her head. They are going to pull it out while she is awake.

This was Kara's 7th brain surgery and she is such an example to Sherri and I. She has so much courage, strength and faith. She is so strong and such a fighter and she still manages to smile! She is truly amazing!!!

Thanks so much for all your prayers! God certainly heard them and answered them!

I will post tomorrow after we talk to Dr. Frim.

David

Thursday, October 21, 2004 6:19 PM CDT

Hi Everyone,

Kara has been in alot of pain today. Please pray that some of her pain will ease! She hasn't been able to fall asleep at either, so we're hoping that she can get some rest. They are trying to be careful with the pain medications and that's why she is still having alot of pain. She is still in the ICU. I will post tomorrow.

David

Thursday, October 21, 2004 8:41 AM CDT

Kara has been sleeping alot since the surgery and has came throught the night good. Dr. Frim came in and talked to us, he said that he had never seen anything like the way her patch looked (it was folded and buckled and adhesed to her brain) he said he could see it on the MRI, but to see it in real life was bizarre. He told us that he took pictures of the way it looked (Sherri told him that she does not want to see them) Dr. Frim said, well if your ever looking through Time magazine and see the pictures you will know who it was.
He said there was lots of scar tissue on her brain, the bovine patch was too large to replace all of it with Karas own tissue, so only the bottom 2/3 part and the part where the patch was adhesed & buckled was replaced. The 4th ventricle was blocked, but now is unblocked and the flow has been restored. He is hoping that no leak will occur, but if it does the shunt is still in place.
Kara is still in intensive care but should be going to a step down room where they can still monitor her close. I will try to keep you all posted daily if I can. Thanks again for your continual prayers and support.-David

Wednesday, October 20, 2004 6:15 AM CDT

Hi,

Today is surgery day for Kara. She is still scheduled for 12:00 noon (1:00 pm Ohio Time). She has to be at the hospital at 10:00 am. We had just a little trouble sleeping, but not too bad. Keep those prayers coming....we believe that the Lord is going to allow everything to go just fine!! David will try to post an update later this evening if he can. Thanks for all the prayers and support!

Sherri

Tuesday, October 19, 2004 8:59 AM CDT

We are leaving today for Chicago. Please keep Kara and our family in your prayers. Kara's surgery is scheduled for 12:00 noon tomorrow (1:00 Ohio time)if anything changes we will let you know, I will try to post each day to let everyone know how she is doing. Tomorrow the day of the surgery may be the hardest day to post, unless I can do it later. Thanks for all of your prayers and support.

David

Wednesday, September 29, 2004 11:55 AM CDT

We just heard from Chicago and Kara's surgery is scheduled for October 20th. She will have an exploration of her previous decompression and her bovine patch will be removed and her own tissue that will be harvested will be put in it's place. Please continue to pray for us....it's really hard to imagine Kara going through all of this again. This will be her 7th brain surgery. Our hearts are really heavy right now. Pray that all goes well, especially where the pain medications are concerned. She has previously coded on two other surgeries from the narcotics that were given to her. We'll just keep trusting in the Lord.

Thanks,

David & Sherri

Thursday, September 23, 2004 8:58 PM CDT

Hi Everyone,

Kara just spent 5 hours here at the hospital. Her MRI lasted for 2 hours and then we got to see Dr. Frim and we just now got back to the Ronald McDonald House at 10:00 pm.

I guess Kara will need to have another surgery to remove the bovine patch that is adhesed to her brain and then have her own tissue harvested to replace it. She has almost no CSF flow at the back of her head and Dr. Frim said that the area does not look good on the MRI at all.

The sad thing is, according to Dr. Frim, she might even have to have another surgery after that one to replace some parts on her shunt or to move some parts on her shunt. This will depend on the results of the other surgery.

Once again...Dr. Frim left the surgery decision totally up to Kara. Surgery might be scheduled as soon as October...we are not sure yet.

Dr. Frim went ahead and adjusted her shunt so that it would drain more, although he said that Kara's ventricles looked pretty small (like they have been drained alot). No X-ray was done to make sure that the shunt is on the correct setting. We will wait and make sure that she feels well in the morning and if so...we will head home. If not...she will have to have her shunt adjusted again in the morning.

Well...we are all tired...so we are headed up to our room here at the RMH. Thanks for all your prayers!

David & Sherri

Thursday, September 23, 2004 6:04 AM CDT

Well.....we are just getting ready to leave for Chicago. After Kara's appt. tonight we will be staying at the Ronald McDonald House and they have a computer...so we will post what Dr. Frim has to say. Keep us in your prayers! Thanks to everyone who stopped over last night (Love you Guys)!

David & Sherri Ketchesin

Sunday, September 19, 2004 7:42 AM CDT

We wanted to say "Thank You" to everyone who helped make the car wash a success for ASAP. Everyone worked so hard and we wanted you to know that we appreciated it so very much!

We will be leaving for Chicago in 4 days and will post when we get back. Please keep Kara in your prayers!

Thanks again to everyone!!

David & Sherri....Kyle & Kara

Tuesday, September 14, 2004 6:02 AM CDT

We Have Some Good News!!!!!

Kara's friends Steph Hackney, Ashley Sobieski and Matt Ives have decided to put on a carwash for Kara and proceeds are going to the ASAP (American Syringomyelia Alliance Project), to find a cure for SM!! There are alot of other friends that are coming to help! The carwash will be held on:

Saturday, September 18th...from 10:00 am to 3:00pm
At The Marathon Station (Corner of Rt.58 & 113).

Needless to say...Our hearts have been touched by the kindness of these teens! They are awesome and we want to thank them in advance for all that they are doing for Kara and all the others that suffer from Syringomyelia and Chiari Malformation!! What Big Hearts these kids have!!!After the carwash we will be adding some pictures from it and will put them in the photo area.

David & Sherri Ketchesin

Thursday, September 2, 2004 11:20 AM CDT

We just got an email from Chicago. Kara's appt. has been moved up to Thursday, September 23rd. She will have an MRI on the 23rd at 4:15 and then she will see Dr. Frim following that. We will stay at the Ronald McDonald House at the University of Chicago Children's Hospital in Chicago Thurs. night and then head home the following day on Friday. Kyle is going to stay home so that he won't miss school or college. Continue to keep Kara in your prayers.

David & Sherri

Saturday, August 28, 2004 1:14 AM CDT

We had to take Kara to the MetroHealth Emergency Room last night. She had been complaining that her head pain was much worse and that she had dizziness and almost passed out twice. We wanted to make sure that nothing was wrong with her shunt. We ended up in the E.R. for 6 hours, but thankfully Uncle Fidel showed up and kept us company!

Kara ended up with an IV that she didn't need in the end. She had a shunt series of x-rays and CT scan that checked her shunt from the top of her head and down into her abdomen to make sure that nothing was blocked. The CT scan checked the ventricles of the brain. All the tests came back good. The doctor thinks that she needs to have a shunt adjustment done to decrease the draining. So..we will probably end up making another trip to Cleveland this week to have that done. The shunt is just probably over draining right now. Of course there never seems to be that majic number on the shunt, it's either being moved up or down.

Dr. Frim emailed Kara back and told her that it sounds like she needs to come a bit sooner than scheduled and that he will have to make a new plan. They will let us know when the new appt. will be. Please keep praying because that's what we are doing.

David & Sherri

Friday, August 20, 2004 10:25 AM CDT

Kara's pain levels have increased, so we emailed Dr. Frim and are waiting to hear back from him. He will let us know if he needs to see Kara sooner than November 11th.

Even though the pain has increased...Kara still continues to remain strong and still continues to function. She tells us that the pain is always with her and it never leaves. Her medication (Topamax) doesn't seem to be working. We tried to increase the dose, but she felt so terrible on it and she asked us to decrease the dose back down.

Kara came to us crying the other night because she is afraid that she will have to have another brain surgery to replace the bovine patch and it really scares her to think about it. We may be headed in that direction, but we are still praying for God's guidance on all of this. No decisions have been made yet.

David & Sherri

Wednesday, August 11, 2004 6:45 PM CDT

Hi everyone,

As you all probably know Kara was diagnosed with Chiari Malformation and Syringomyelia in March 2001. Since then Kara has had a total of 6 brain surgeries. Although she has been through alot of suffering, she continues to smile and continues to have a positive outlook on life.

Kara's appt. with Dr. Frim in Chicago was on 6/10/04. Although there were answers that we really didn't want to hear, we were still able to come home with some answers as to why Kara has continued to have problems. Here are some of the diagnoses that Dr. Frim gave:

1. Kara's body is rejecting the bovine graft and it is adhesing to her cerebellum. It's curling up and as a defense mechanism, her body is building up scar tissue around the graft to shut it out. Having had the pseudomeningocele made things worse. It is apparent that Kara's body has all along rejected the graft, because she never got better after each decompression (using bovine) and then she had major trouble with leak after leak after leak (her body just didn't want this bovine in her head). This is why she continues to have daily pain. After reviewing the most recent MRI's, Kara's neurosurgeon in Cleveland told us that she has never seen a patch look like this on anyone before and Dr. Frim said that he has only seen some that looked somewhat similar.

2. The scar tissue is starting to restrict the flow of CSF, making it tighter in the fossa area again.

3. In turn, her syrinx is bigger (fatter) and has caused muscle weakness in her left arm and her right leg and pain.

Dr. Frim suggested two ways of handling these problems.

1. He can do brain surgery again and remove the bovine graft and replace it with Kara's own fascia & tissue (it would be harvested from the top of her head). He said with surgery there are always risks (which we well know) and no guarantees. He would also bring in a plastic surgeon to clean up her scar because it is so wide.

2. Kara can try to use medication to control her pain. Some of the medications that he mentioned Kara has already tried and they haven't worked. She is currently trying Topamax.

Dr. Frim directed everything at Kara and left it up to her. Of course she chose to try medication for right now and could not even begin to fathom a 7th brain surgery. We feel like we are between a rock and a hard place because this all has a snowball affect. With the flow being restricted it then causes the syrinx to get bigger and then that can cause more SM pain and possibly more muscle weakness etc. As a family, we are still trying to digest everything, so please continue to pray for us, (especially Kara, because she still continues to have daily pain.)

Kara's next appointment in Chicago with Dr. Frim will be on November 11th. We are starting to realize that as time goes on...it is becoming more apparent that eventually Kara will need the surgery to replace the bovine.

Thanks, David & Sherri Ketchesin

Wednesday, August 11, 2004 5:32 PM CDT

We have decided to create this web page to keep everyone informed on Kara's continued journey with Chiari Malformation and Syringomyelia. We have in the past emailed our updates, but we feel that this is a better way to update family and friends. Feel free to check this site often and we will keep it updated with new information.

Click here to go back to the main page.

----End of History----