OLD UPDATES:

Karuna's Carepage  2/07-3/08

1/27/07

Karuna is doing OK. She enjoyed Christmas with her grandparents and got a bunch of great gifts, including a Weeble switch and art switch toy, two computer programs, and a visually impaired activity center she adores. She loved opening all her presents.

Healthwise, Karuna is pretty stable. She had a recent GI appointment and it seems likely she will be on TPN for the rest of her life, as long as her liver can tolerate it. She is scheduled to have an MRI and MRCP (biliary/pancreas MRI) February 19. We don't expect any answers from these tests, but they may help us rule out a few more things. Her pain continues to be pretty bad, but much better than this summer.

Karuna has had a rough time with seizures lately. She is currently switching from Keppra to Topamax and we have seen some positive developments with that change. Her cognitive level has returned back to where it was before she got sick and she is once again using her vision...actually demanding it! Since starting the Topamax, she has done some really nice work with her switches and computer.

I guess the most important news is that Karuna got her first haircut! I cut bangs for her since her hair was always in her face. The rest of her hair is the same...and just about down to her rear end! See the pic above and here is another:

December 5, 2006

Karuna has been back to school for 3 weeks (3-4 days a week) and is loving it! She goes to school with her nurse and has PT, OT, Speech, Aug Comm, Vision, Computer, Gym, Art, and Music at school. Thus far her favorite day was when she got to use the GoBot in Gym. This is a robotic base with a seat on the top that is powered by her headswitch--she was driving all over the gym! I have also been really pleased that her teachers have been incorporating her MightyMo Communicator into her day. She uses it routinely during Circle Time and also uses it independently during the day.

We have not made any progress with gastric or jejunal feeds for Karuna. She remains on 100% TPN. Her pain level has remained pretty much the same as well.

I FINALLY updated all the photo galleries. Here are some highlights:

November 15, 2006

This update is a mixed bag. The really good news is that Karuna has been able to return to school! She had two great days with only a little bit of crying thus far. She attends school with her private nurses, which makes me feel a whole lot more comfortable. I know she will be well-cared for and monitored continuously throughout the day. So far she is really enjoying art and adapted gym.

Karuna and Samee also had a great Halloween. Karuna dressed up as a Storybook witch, complete with a Quidditch broomstick. Samee was Elmo. I'll get some photos up soon. We went Trick-or-Treating for about an hour, just on our block. Samee enjoyed greeting the neighbors and putting the candy in his pumpkin. Karuna used her head switch and sequencer to "speak" a bunch of Halloween phrases and boy was she talking her head off! Even Daddy dressed up this year.

The bad news is that Karuna once again failed another trial of feeds. She did well for two weeks on small boluses of Pedialyte. But as soon as formula was added, and I'm talking about 2 ounces of 1/4 strength formula over the whole day, she started having a lot more pain and irritability. We've stopped feeds again and she is feeling better. I'm not sure if this is still her pancreas acting up, or if it is her visceral hyperalgesia. We also had the unfortunate but inevitable Samee incident occur--he pulled out her GJ tube. We spent 8 hours at Children's this Monday getting it replaced.

October 28, 2006

I am glad to finally be able to give a positive update. :) We increased two of Karuna's pain meds, Lyrica and Tramadol, and she is doing much better. Her pain has decreased significantly, as has her retching and vomiting. She is now able to do much more, including finally being able to sit comfortably in her wheelchair (the position presses on her stomach), going in her gait trainer, and riding in the car comfortably. We are thinking she may even be able to go back to school in a week or two. Yay!

She still has her GJ tube in place and we have started some very slow feeds of Pedialyte into her gut. She gets 1oz Pedialyte per day over 6 hours. Despite everything that has happened with her, she still wants to eat by mouth and is happy to taste a little bit of food here and there. Karuna has a follow-up GI appt next week in Milwaukee, and she also has appointments coming up to get new braces (AFOs, wrist splints, and trunk vest), an Orthopedics appt at Shriner's, and a Neurology appt at Children's.

Karuna's recent activities have included taking steps in her gait trainer! She does very well with the right leg, but needs more assistance with the left leg. She also made cookies all by herself, including mixing the dough with a switch-operator hand mixer, rolling the dough with her OT, and cutting out the cookies. They were very yummy. She has also started using her computer again. She's a little doped up on all her meds, so her computer and communicator work is not where it once was, but she still enjoys cause and effect programs.

Please continue to pray for Karuna's friend Amber, the one with CP and pancreatitis. Her condition is extremely critical and her parents are now trying to make the decision whether to withdraw support or continue trying to treat her.


October 10, 2006

Karuna's had some ups and downs. Her GI at Children's Memorial left the hospital and there was not anybody else willing to take on Karuna's care because she is so complicated. They decided to split her care between the Liver/Intestinal transplant team (for TPN and line-related stuff) and a regular GI specializing in Motility. After one week of absolute chaos under this crazy system, we transferred her GI care to Children's Hospital of Wisconsin. There is a doctor there who specializes in the pancreas (one of only two pediatric pancreas docs we know) as well as motility. He agreed to take Karuna on and got uis in within a week. His opinion is that Karuna still has pancreatitis. In most children, they get pancreatitis for a week and are fine with no further problems. About 10-15 kids a year get more severe pancreatitis that leads to the destruction of the pancreas, the ICU, and a poor outcome. This doctor has said they have seen a handful of children over the past few years that are somewhere between these two extremes. The good news is that usually they do recover...it just takes 6 months or a year to get there. We are hoping this will be Karuna's path. Thus far her pancreas looks good.

Her new doctor also wanted to retry a GJ tube for Karuna. This is a tube that is passed through her G button into her small intestine and allows feeding into either the stomach or the intestine. The main reason to try this is to decide whether surgically inserting a new button right into Karuna's intestine would allow Karuna to be fed that way instead of through her IV. Thus far she has not done very well with it. She has somehow managed not to retch this one out, but she has had lots of severe retching and vomiting and is putting out lots of dark green bile, especially at night. I have been able to feed her 5ml per hour of Pedialyte during the day with the tube, but she is definitely not tolerating the tube or feeds through it very well. She has begun to have more pain crises as well. We are giving it one more week to see if she adjusts, but it looks like she will need to stay on gut rest for awhile longer.

In addition, Karuna spiked a fever Sunday night. Since she has no other symptoms, we are thinking it is probably an infection. She is not that sick clinically, but her platelets, white blood count, and hemoglobin have all plummeted as compared to last week. We are waiting on the results of blood cultures. It would not surprise me if this new GJ irritated her intestinal mucosa, allowing bacteria to seep into her bloodstream. Hopefully she just has a virus or a UTI instead because I really don't want her to have to go through another episode of sepsis. Those get really scary.

The good news is that Karuna is now getting home nursing for 8 hours a day on weekdays, and occasional night shifts as well. It has helped enormously. Her care has become too demanding for one person alone. She has an RN every day, and her two day nurses, Cheryl and John, are really great!

September 12, 2006

We would really appreciate prayers for Karuna's friend Amber. Amber also has Cerebral Palsy and Pancreatitis and is critically ill. She has just had a major surgery to remove her pancreas and transplant her islet cells to her liver. The next few days will be very difficult for her. Please pray for her and her mother Amy.

Karuna is about the same. The good news is that she is having fewer pain crises, so we are doing a better job of controlling her pain. She takes Tramadol and Motrin around the clock and also uses a pain patch. Unfortunately she cannot take stronger pain meds due to respiratory issues. She also takes Nortriptylline for neuropathic pain. She is beginning acpuncture treatments this week...we will see how many we can do since we have to pay out-of-pocket. She continues to have an enormous amount of chronic pain and continues to vomit many times a day. We have not been able to trial any gut feedings. Her TPN (IV nutrition) has been reduced to 18 hours (same total amount though) to give her liver more time to rest each day as she was showing early signs of potential liver problems.

We have had a few other setbacks. A GI doctor thought that one of Karuna's seizure meds, Neurontin, might be at toxic levels. This medication was weaned off, which increased Karuna's pain and caused longer and more frequent seizures. To compensate, the neurologists tried to raise her other seizure med, Keppra, something I was not too excited about given the fact that higher doses have always meant more seizures for Karuna. The combination of taking the Neurontin away and raising the Keppra caused Karuna to have two generalized seizures (she normally has mild partial ones). Once we went back to her old dosage these stopped, so hopefully it was a one-time thing. We also hope to get her back on the Neurontin or its new cousin, Lyrica.

Other than that, Karuna's bloodwork has stabilized. We are mostly just struggling to control her pain and prevent more life-threatening infections. She is looking more and more like a case of chronic pancreatitis, but only time will tell if her pancreas is being injured more or if she simply has continued pain from her earlier episode(s).

August 26, 2006

Sorry not to have updated sooner. As many of you know, Karuna has spent the last month in the hospital. It is difficult for me to update her webpage from other computers, so no update made it on the page. I think next time I will set up a Carepage from the hospital to detail her day-to-day updates. Anyway, here is the whole story. Karuna had a PICC line placed July 13 to get IV nutrition at home since we were unable to get her to tolerate either G or GJ feeds due to extreme pain and vomiting. About 10 days after she got her line, she got a very serious Klebsiella oxytoca infection in her blood. The infectious disease team believes that some bacteria from her gut leaked out into her blood, giving her sepsis. She recovered well from this episode, but got a repeat infection a week later while on antibiotics. The second infection was much more serious and she was rushed to the ER and admitted at Comer Children's for almost a week. 6 antibiotics, 4 weeks later, and a replacement line, her bloodwork has finally stabilized. She also required a blood transfusion since her platelets and hemoglobin had dropped. Unfortunately we expect to see more of these life-threatening infections since her gut is so unstable right now and the line puts her at higher risk. They are very scary...with the second one she went from fine to a temp of 104.5 (on Tylenol), heartrate over 200, respirations over 80, and white as a ghost in less than an hour.

Once Karuna was stable enough to be transported, we took her to Cincinnati Children's hospital, which has one of the top 2 GI programs in the country. She was inpatient there for almost 3 weeks. 3 very long weeks. She had tons and tons of tests to try to determine the cause of her severe GI pain, vomiting, and feeding intolerance. Most of the tests came back normal, though we did learn she has some mild lung damage, and borderline low function of her pancreas. Her current diagnosis is post-pancreatitis and/or post-viral visceral hyperalgesia and dysmotility. In English, that means that the senory and motor nerves in her stomach and gut are not working properly, making her gut spasm and making her have a lot of abdominal pain and vomiting. We are working on addressing these issues with a variety of pain medicines that targrt both visceral and neuropathic pain. Since Karuna's gut dysfunction will be longterm, she had a central line placed in her chest to be a permanent access point for her TPN (IV nutrition). We hope that with time she will begin to improve. Thus far her liver is handling the TPN OK.

We hope to start in-home nursing care this week since Karuna's care has become so demanding and difficult.

We also wanted to thank everybody for the thoughts, prayers, and gifts. It has been a very difficult time for all of us. I did not get to see Samee for 3 weeks. :(

July 20, 2006

Karuna is doing better! We were unable to get her back on to feeds, though. We tried a GJ tube into her intestine, but as expected, she vomited that out in less than 3 days. She was also in a ton of pain and still vomiting. So a week ago we had a PICC line placed and she is on 24 hour TPN. Basically, this is a semi-permanent IV in her upper arm, and she is receiving all of her nutrition through the IV. We hope to restart feeds through her belly this week. The TPN has made an amazing difference...the smiley, happy, perky Karuna is back!

Karuna's had a lot of tests lately, including full-body Xrays to rule out fractures and dislocations, and a Gastric Emptying scan. Nobody can quite figure out why her belly is hurting her so much since her pancreatitis has resolved. Hopefully things will continue to improve with time.

July 8, 2006

Karuna has been having a really hard time recently. After 4 days of going to school, Karuna came down with a 102F fever and vomiting, and her fever spiked to 104.5 eventually. After several days of non-stop screaming and inability to tolerate feeds, she was diagnosed with pancreatitis. She was admitted to the hospital for 4 days of gut rest, just getting IV fluids. She is now home, but spiked another fever, is vomiting all the time, and has not tolerated more than 4oz of formula. We hope she begins to improve soon, otherwise she will have to have a PICC line placed to be on TPN (IV nutrition) for awhile. She also is on a completely non-fat diet. We have no idea why she got pancreatitis...it is very rare in children. It may have something to do with the coxsackie virus she had in May.

School is on hold for now. We hope she will be able to make it back for some of the summer session. She's already missed two weeks and there are only two more weeks remaining. :(

I finally did get around to finishing and updating Karuna's photo gallery. Click HERE to visit. It even has a few starting school pictures on THIS PAGE.

I hope to get pictures up from Karuna's 3rd birthday soon. She received an Indoor Doorway Swing from us, along with some smaller gifts like headphones for her communicator and a heating pad. She also had a lovely little party given for her by her OT and PT.

June 15, 2006

Karuna is almost 3! She will be starting preschool June 19 at Stock School, a special preschool for children with disabilities. She is so excited! She already picked out her notebook (pink with flowers, big surprise there!) and her backpack (also pink). She will attend Monday through Thursday, 8:30-12, for five weeks during the summer. Her friend Jackson will also be attending with her.

Karuna has had a really tough time lately with illness and reflux and sleep. She will be going to Cincinnati Children's Hospital this summer for a week of testing at their Aerodigestive Center. This clinic specializes in children with complex gastrointestinal, respiratory, and sleep issues. Hopefully they will be able to determine a plan for Karuna to help her reflux improve, get her sleeping, and alleviate some of her pain.

In May we had the privilege of visiting Karuna's Grandparents in North Carolina. While there, we also saw Aunt Kristin, Uncle Bob, Arley and Everett; Great Aunt Christina and cousin Jesse; Great Uncle Jim; Great Uncle Mike; Great Aunt Carol, Cousin Jana, Caroline and Ellie. Unfortunately Karuna was really sick (and Samee too), but we still enjoyed the ocean air.

February 20, 2006

It has been a bit of a tough winter. Thanks to Samee, Karuna has had 3 colds. She has also struggled with seizures and her sleep medicine. We are working to resolve these issues, which have interrupted Karuna's development and stalled her progress.

Overall, Karuna's head control is finally improving slightly. She still has a long way to go, but is slowly making progress.

I guess the most important news is that Karuna got her wheelchair! It is awesome and I've posted a few pics below. She also has some other equipment on order, including a Pacer gait trainer and a Manatee bath chair, as well as some positioning items.

Earlier this month Karuna had an augmentative communication evaluation at Easter Seals of DuPage. Karuna was able to use computer programs and switches for the first time to do all sorts of things, such as draw shapes, play music, ask for a massage, and color. She loved it! The team there has made a large equipment order for her, including a very advanced computerized communicator called the Dynavox Mightymo. We are so excited for her!

Karuna is also officially enrolled in school. She is currently beginning the evaluation process for school placement and will begin school in July.

December 3, 2005

Karuna continues to make lots of progress, especially with her vision and her cognitive development. We have spent many days going to the Aquarium to look at the fish, something she really loves, and something that motivates her to lift her head and use her eyes to track.

In October Karuna started with a new Occupational Therapist who is doing wonders for her. Karuna has been making small but steady progress with holding her head in midline and using her hands and arms more. Karuna now goes to OT clinic where she loves to play on the special swings. She has also started Aquatic therapy at Vital Rehabilitation Clinic. Who can resist a 98 degree pool?

We moved in October and Karuna now has her very own pink room! She is sleeping in a big girl bed and loving it, especially since she is far away from that noisy little brother of hers. She is sleeping wonderfully and is actually stopping her sleep medicine, using another shorter acting drug to help wean off of it. See pictures of her room by clicking HERE.

Karuna continues to tolerate Sameer, but is annoyed by his constant hair pulling and eye poking. She also hates when he cries...she will always let Mama know when he has cried for more than about 10 seconds.

Karuna enjoyed seeing her Grandparents in October and dressing up as a Pink Fairy for Halloween. She is looking forward to opening presents during this holiday season. She is also looking forward to a new cousin's birth, expected in mid December.

June 11, 2005

Just a brief update for now. Karuna is doing great! She is finally starting to get her head and trunk control back. She is eating an average of 3oz by mouth for both breakfast and dinner. Her favorite breakfasts are Real Oatmeal (none of that baby cereal!) with cinnamon or vanilla, Grits with Margarine, or Cream of Wheat. Some of her favorite dinners include Baby Dal, Baked Potato Puree, and Lentil Chowder Puree. And to top it all off...Vanilla Fudge Tofutti Ice Cream!

Karuna had a playdate with her friend Jackson. She really wanted to kiss him! Here are some pictures:

May 23, 2005

Yet another huge gap between updates. Sorry. Between Sameer's birth and Mama finishing her 1045 page dissertation, things got busy.

The biggest news, of course, is Sameer's birth on March 4, 2005. He weighed 8 pounds, 6 ounces and was 19 inches long. Now, at 2.5 months, he is 13 pounds, 11 ounces and 24 inches long. He's a big boy! He's already cooing up a storm, flirting with the ladies, and has just started rolling. Go to Sameer's Page for pictures. Karuna's a great big sister. She is so loving toward Sameer, always patting him and hugging him.

Karuna has continued to struggle with a loss in head and trunk control. We are weaning her sleep medicine (Klonopin) to try to address at least one cause of the problem. She has had a lot of success with her bright pink Benik vest, which gives her additional trunk support. She had another round of Botox on her thumbs on forearms in April.

Karuna had her adenoids out in mid-May. Her airway was 98% obstructed, so they had to go! She is already breathing much easier and we hope that this will help her with both eating and vocalizing. Speaking of eating, Karuna is now eating 2oz. of homemade purees at dinner! Her eating is really coming along. Recent favorites include baked potato puree and popsicles.

Karuna has continued to soar with her cognitive progress. She is now working on skills in the 2 to 3 year old range and has mastered most skills for her age in motor-adapted ways. This week she is really enjoying a shape puzzle, putting a circle and square in their appropriate holes.

We are running out of webspace so no more pictures until I find a way to get some more space.

 

February 27, 2005

Sorry it took so long to update! We've been busy between preparations for Baby Boy Turtle's birth (March 4), Mama's dissertation defense (she passed!), and Dada working nonstop to get some time off for Turtle's birth in March.

The bad news is Karuna had a bout with RSV in January and was very sick for two weeks. We were able to keep her out of the hospital, thanks to her G-tube, suction pump, and her really strong lungs. Karuna lost a lot of muscle strength during her illness and is having more trouble with head control and sitting up. She is gradually improving.

Karuna had more botox treatments in January. Her arms are working much better now! Her hands are nice and open, she is able to bring hand to mouth with minimal assistance, and she is able to move and manipulate her arms much more. While the botox injections in her legs helped a little, her legs still will not straighten. We expect her to have surgery on them in the next year or so. They are getting progressively worse, as her tight hamstrings are causing her legs to bow and scissor.

While Karuna's gross motor skills have not improved too much lately, she is developing much more volitional control over all of her muscles. She is sitting about half the time in her Wombat chair with no harness and is kicking and reaching much more. Her hands want to explore everything!! She is also showing signs of improved vision.

Karuna has taken up singing! She vocalizes along with all her favorite Raffi songs. She has become quite the little vocalizer, trying to talk responsively, especially in the mornings. She still mostly says vowel sounds, but she's really trying to talk. She is also laughing and smiling all the time now. She has grown 3 molars and is improving dramatically with her tongue motions and chewing, and has just started to eat a few whole Gerber Fruit Puffs.

We have finally achieved SLEEP! Karuna has been sleeping through the night most nights since January and we were even able to reduce her sedative since it was making her floppy. She is actually starting to fall asleep in her bed on her own, although she inevitably ends up in the bed with Mama and Dada when she wakes up in the morning.

In February we struggled through several weeks of increased reflux when the compounding agent we used to turn her Prevacid into a liquid was taken off the market. She failed several other formulations. Eventually we were able to enroll her in a study to get her old medicine back...but only until December. Any ideas?

Karuna's biggest progress lately has been her cognitive development. She is beginning to follow simple commands and identifies both animals and family members by selecting the correct one when asked. She is able to correctly push "horse" or "pig" or "cow" on her animal toy when asked, and she sometimes will press "Karuna" or "Daddy" on her two panel talker...although sometimes she just likes to press "Karuna" over and over! Based on recent improvements, we believe both her receptive speech and cognitive abilities are quite good.

Baby brother Turtle is coming in a week, so we expect some regression. Hopefully Karuna will be her wonderful loving self and not become a jealous monster!

November 16, 2004

Karuna is completely off phenobarb! She had a rough month between the phenobarb withdrawal, getting two new teeth (finally a top tooth!), a period of increased reflux, and yet another failed formula change. Karuna seems to be allergic to toddler formulas...they all give her hives and make her vomit! Nonetheless, she has made a dramatic turn around in the past week and is doing even better with her sitting and rolling.

After two weeks of Karuna sleeping about 6 hours a night in four tiny chunks, we switched her to Klonopin both to reduce her muscle tone and help her sleep. So far it has been a miracle...5 nights in a row of sleeping through the night. I did not know such a thing was possible! We are in the "honeymoon" period of the drug...it may eventually build up in her system and cause a hangover effect or she may become tolerant to it like she has with Ativan and Valium.

Other good news: Karuna's Wombat Positioning Chair has just arrived! We will let you know how she likes it. Also, we are hiring a Helper to assist with Karuna's care as Mama becomes more and more pregnant and frantically tries to finish her dissertation.

Here's Karuna in her Wombat chair eating breakfast.

Here is a picture of Karuna's Baby Brother!

 

October 7, 2004

Karuna has received some of her equipment after a really long wait. I should not complain...it may take the state 5 months, but we could never afford this stuff out of pocket. She has received two of her items: a Superstand and a Wedge. Here are some pictures:

Karuna is almost off Phenobarb! We are down from 5 pills a night to 1. She continues to do well with Keppra, although we are still seeing 10 or so seizures a day. Far better than the 30 a day on Phenobarb and 80 a day on nothing.

Karuna also started Lekotek, which is a toy-lending program for special needs children. Each month a specially trained leader introduces her to a variety of toys that are adapted or appropriate for kids with motor restrictions. We pick toys that help to advance her therapeutic goals, as well as toys she has fun with!! She gets the toys for a month and then exchanges them for more toys next month. Here is a picture of one of her toys. As you can see, she is working really hard at sitting to try to play with it.

Karuna's botox, although very minimal for the first time, has made a dramatic improvement in her ability to use her arms. Her thumbs are now appropriately positioned and she is able to grasp large objects for the first time. She also had a little botox in her shoulders (deltoids) and triceps. This has mostly allowed her to be more comfortable in positions such as prone or side-lying. She is also able to bring her hands together more in midline and bring them to her mouth with Mama's help. We will definitely continue with the botox in the future!

We are so proud of Karuna's continuing progress!

 

September 8, 2004

Karuna has been on Keppra for a week! Cross your fingers that she will start having seizure control after 7 months of uncontrolled seizures.

Karuna accidentally showed Mama that she can crawl with her back half! Her arms and trunk are still too weak, but her legs know just what to do.

Today Karuna said "Ma!" I don't think she really knows what it means, but I am not complaining!

Tomorrow is Botox for Karuna. She will have an evaluation and hopefully botox on her upper extremities. We'll let you know how it works.