History

Journal History

Sunday, June 14, 2009 9:44 PM CDT

Wow has it been a long time since we updated the site! More than a year! I guess that means that Joshua has not had any surgery's since the hip in April of 2008. You are right if that is the case. But that does not also mean that things have been easy. Since the fall/winter we have had some rocky months. Starting with a cellulitis around Josh's G-tube which lead to some hefty antibiotics trashing his stomach and GI system. And a pneumonia in the fall.

We managed to do our annual trip to Disney and had a blast in November. However, upon our return Joshua through another curve ball at us. Things where just not right and we noticed som major GI problems. After suffering through December we pushed our GI doc for a colonoscopy. Well she could not believe it but the the scan revealed that Joshua now has Crohn's disease. Yes, that is right Crohn's disease on top of EVERYTHING ELSE! We would just like God to stop pressing enter on the big computer and give some stuff to someone else!

So we have gone through the winter trying to manage the Crohn's disease, changing formula, different drugs, etc., so far nothing has worked and Joshua has been in incredible stomach and intestine pain and missed a lot of school since January. On top of all that I herniated a disc lifting Joshua out of his wheel chair in mid-January. Needless to say it ws a very long winter for Erica. I could not lift Joshua at all. We tried everything and finally I went to back surgery in March and it was a success! I have been going to PT for about 2.5 months and I am getting stronger. I can do some lifting and two man lifts with Joshua.

Last but not least we are noticed a few months ago a bump by the left side on Joshua's head. So we are heading for neuro-surgery tomorrow to fix the tittanium mesh because Joshua has a screw loose, I say it is from Eric'a side of the family, she say's it is from the Gendel side, who knows. We hope Dr. Fried does not find anything major and this is a quick hospital stay. We have not had a neuro-surgery in a while, I think this is number 30 or 40,. Anyway your thoughts, good wishes, and prayers are always appreciated.

So all in all a long year, lots of ups and downs. Thank heavens Joshua is still a smiling and happy boy and turned 10 in May!! I know he made it!

Needless to say we are tired, Erica especially from Joshua's and my medical trials. Thank heavens our nurses at home have been helpful.

Sorry it has been so long since we updated, we will try to update more frequently and after surgery on Monday. We hope all of you and your family's are well.

-Steven

Saturday, May 31, 2008 1:34 PM CDT

I can't believe it's been so long since our last update. Joshua celebrated his birthday this month while still in casts and had a blast celebrating with his family and some close friends. It was a double bonus because it was on Mother's Day. We had lots of fun and great food. Josh's best gift was getting out of his casts two days later. Joshua did really well after surgery and healed beautifully. He's already back to school and all of his therapies. And, Joshua now knows how to sleep on his tummy and his back. This is very big news in our world. Joshua likes to do 'Big Boy' things like sleep on his back and sit up in his bathchair. 9 years old is big time fun. Since casts came off, Josh is much more comfortable than prior to surgery and seems to have less extensor tone. We're even decreasing some medications. All good news.

Thanks everyone for checking in, sending good wishes and prayers our way, and supporting us with calls, cards, emails, and fun goodies. It all clearly paid off. If only all surgeries and recoveries could be as smooth.

We'll be catching up on some doctor visits over the next month and having Joshua's gastrostomy switched out to our more comfortable Mic-Key button (yep, that's what it's called -- how fitting for us). We look forward to summer fun and visiting with lots of friends and family.

Best,
Erica

Friday, May 2, 2008 2:16 PM CDT

Hi Everyone. Josh continues to heal very well from surgery and will be out of casts in a couple weeks. He is more than halfway through the ordeal barring any unforeseen challenges. Thankfully, the nurses that have continued to come to see Josh have helped tremendously to keep us all sane. They have been amazing to keep Josh comfortable, clean, and occupied. Josh has also been busy with family and some friends. He’s been going through lots of books and completed Charlotte’s Web, Stuart Little, and Charlie and the Chocolate Factory.

Josh is starting to say, “I go out,” a whole lot more. He and I are feeling the walls start to close in on us because we haven’t been out since coming home from the hospital. Unfortunately, our rental reclining wheelchair doesn’t work out so well for anything more than getting from the car into the doctor’s office (Tuesday’s adventure), and it was a bit crazy because we needed three adults to make the trip. Fortunately as Josh feels comfortable, he can start to sit more upright and bend knees. Josh is even letting us know that he wants his blue casts off his legs. Sleep has been much easier than I expected it would be for him sleeping on his back. Josh has had a few instances where we had to sprint into his room to protect his airway. Overall, he’s been pretty safe and I think that Josh can even have options for sleeping on his stomach or back once this whole hip adventure is over.

Thanks everyone for your warm wishes, cards, calls, visits, emails, food, and laughs through our fun adventure of surgery and casts. Best, Erica

Friday, May 2, 2008 2:16 PM CDT

Saturday, April 19, 2008 8:57 PM CDT

Happy Passover! We send these wishes from our home where we have just celebrated a quiet family seder that was really special. Being home is great!

Joshua is healing remarkably. He has minimal pain and is generally quite happy. I think that everyone who comes into this house to see Josh is truly astounded at his progress. Josh is spending time both in and out of bed. We have a rental reclining wheelchair that is awful but useful for getting out, which we will not be doing much of because the chair is awful - did I mention that already? We also have a hi-low chair that was given to us a long time ago that I have adapted with some help from Josh's friend's dad which is working well inside the house. Nursing has been helpful already as Josh is bit heavy and cumbersome to transfer in his big blue casts. Thankfully, we've got that help lined up everyday. The nurses are so excited to see Josh doing so well and are content to be with him while he is at home.

School, music, and therapies are on hold for now. He is listening to music, reading Charlotte's Web with anyone who will read with him, and watching movies here and there. So far so good. Sleeping is going much better than we had anticipated. I'm just about swaddling the delicous boy every night using pillows and bedding and stuffed animals. The cozies are working and Josh is sleeping fairly well.

Thanks everyone for your warm wishes, calls, emails, and care packages for Josh's surgery and speedy recovery. We really appreciate it! More to follow as we know more. Calls, emails, and even visits are welcomed.

Best,
Erica

Thursday, April 17, 2008 8:02 AM CDT

We are home! We came home late yesterday much to everyone's shock. But we are all happy to be back home and I must say the NYU staff was amazing.

More to follow.

Steven

Tuesday, April 15, 2008 11:03 AM CDT

Hi everyone! Joshua came through surgery really well. It was not as invasive as it could have been. By yesterday afternoon Joshua was resting in the NYU PICU. He has two blue casts on his legs from the knees down.

We have to thanks our cousin Judy Block for use of her condo near NYU durecing our stay it has made the process much easier!. Thank you!

Joshua slept well, cracked several smiles last night and this morning. Right now the goal is to manage the pain and start feeding him slowly. The sooner we get his stomach working the sooner we can go home.

We are all a little tired because we had to get to the hospital so early yesterday, 5:30 AM.

That is all for now. Thank you again for checking in.

Erica and Steven

Sunday, April 13, 2008 10:03 PM CDT

Hi all! Sorry it has been so long updating. If it has been this long it usually means that things are going well!

They have been! Joshua has been doing really well at school! We are amazed and the carryover to home is just as amazing. He is starting to ask questions such as "why" when certain things happen. Also he asked Erica the other day "Daddy go?" as in Where did Daddy go? She said where do you think? His response "work". Amazing stuff.

We had our annual Disney trip last November and it was awesome as usual and can't wait to go back. December, we ended up in the hospital again with MRSA around the g-tube area and it is finally starting to heal.

Last but not leas both Erica and I are busy with work, her Mary Kay business is growing and I am in the midst of launching a new Keller Williams real estate company.

Now the main news we are heading into the hospital so Joshua can have reconstructive hip surgery. This has been talked about for awhile. We do not want his left hip to get worse and at this point it is 30% out of the joint. We are having the surgery at NYU with a doctor whom has worked on many of the children we know. Anyway, we head to NYU and will update as soon as possible!

Thanks again for checking in.

Steven

P.S. Joshua was a feature in a video for the Friendship Circle you can watch it here:
http://www.fcnj.com/templates/articlecco_cdo/aid/661698/jewish/Banquet-Videos.htm

Monday, October 8, 2007 8:30 PM CDT

Great news!! Joshua is coming on on Tuesday! We are amazed at his progress and how well he is feeling. Erica and I are both tired but excited. More to report tomorrow from home!

Steven

Friday, October 5, 2007 11:15 AM CDT

What a different experience this time around....Joshua had surgery very early yesterday for his third revision of his Nissen fundoplication.

Joshua was in desperate need of a fix for his reflux as he was throwing up quite frequently even without his usual retching. We had huge concerns about Josh aspirating and his tests showed that there was nothing left from the previous Nissen and he was refluxing on the smallest amounts of formula. It wasn't a matter of whether Josh would aspirate, it was a matter of when he would aspirate. We had no choice in having surgery to alleviate the severe reflux.

Josh had surgery with the new Chief of Pediatric Surgery at Hackensack who has significant experience with kids like Josh who continue to have horrible reflux year after year while blowing through previous Nissen fundoplications. Dr. Alexander has really done well with Josh. Surgery was about three hours with a different technique than previously used. Anesthesiology was even great and commented on how well this surgery went.

Josh is recovering really well and has been quite comfortable since yesterday evening. Josh has an epidural for pain management and has only needed a small amount of morphine immmediately after surgery. Josh is already having bowel sounds and will start eating very, very slowly this afternoon! (Last time it took over a week for his stomach to start up again.)

Joshua is smiling and laughing a bit. He is not yet talking but we hope he will later today or tomorrow. He will stay in the PICU for now and we hope to leave from here. Yesterday, the doctor said he hopes Josh will be home in three to four days. We'll be thrilled if we're home by Tuesday.

Thanks everyone for all of your support. We are absolutely exhausted from being up at 5am yesterday and from stress and anxiety. The calls, emails, cards, and food have been great. We hope to have more great news for you all in the next day.

Best,
Erica

Wednesday, October 3, 2007 10:07 PM CDT

Joshua had successful surgery today! We are in the PICU getting him comfortable and he is smiling right now! More later.

Steven

Tuesday, May 22, 2007 7:43 AM CDT

Life at home has been fun and exciting since leaving the hospital. The May celebrations began with Joshua’s birthday, Mother’s Day, Uncle Jeffrey’s birthday, Steven’s birthday, and will conclude with our anniversary. All that with continued outpatient therapy, school, and lots of work for both Steven and me. We can’t believe that it’s been a month since discharge. I don’t even think I have fully unpacked from the hospital.

Josh continues to make progress with therapy and is making amazing progress in school. The therapists at school are thrilled with Josh’s progress and are astonished by his new body. There are real gains being made in all therapies making us excited for what more is to come. Outpatient therapy is also progressing with goals that are very real and require Josh to continue working very hard. School is unbelievable with Josh demonstrating much more patience and willingness to work. He is making gains academically because he has better tools (assistive technology) that are helping him show-off what’s in his head. He’s really quite a smarty pants! We couldn’t be more proud.

One of the biggest challenges for us now is the hectic schedule of schlepping all over the state because I work a few days at Children’s Specialized Hospital some mornings and then trek up to school to get Josh then either go home to drop off a nurse or go directly back to Children’s. We’re feeling the gas crisis in our pockets in a big way. If Josh weren’t making such great progress, I don’t think I would be continuing therapy at Children’s. We are also doing a lot more stretching and therapy at home which is sometimes challenging to squeeze into the schedule. Steven and I are finding new routines every day that we will continue to refine so that Josh gets everything he needs for success.

All else is going well. Josh is still not sweaty anymore which is making us quite excited for warmer weather because he will be able to tolerate much more outside time. We are still tweaking Josh’s medications because his body is still changing. We have some nights when Josh is up a couple times to play or because of discomfort, so we are trying to figure out whether this is a matter of sleep cycle, behavior, or “Baclofen deficiency” (as Dr. Katz would call it). Regardless of some of the medication changes that are continuing, Josh is taking considerably fewer medications than he did prior to surgery. We are very grateful.

That’s the latest and greatest…..Thanks for checking in and keeping Josh in your thoughts and prayers. Rehabilitation is definitely not over and we are excited for what’s still to come.

Best,
Erica

Saturday, April 21, 2007 9:07 PM CDT

It is so nice to be home together! Joshua is excited beyond measure. Thursday’s excitement of leaving the hospital caused him to be quite spastic with arms pinned back and everything. It was the fist we saw that intense tone in his upper extremities. Fortunately, we knew that it was because he was so happy to go home. Josh giggled the whole way home and did lots of belly laughing when we sat together in the kitchen.

We’ve already begun outpatient therapy with a trip back to Children’s on Friday to meet our new physical therapist. Joshua was thrilled to go out with me. I think he was a bit lonely as he became quite used to lots of people around him all the time. Apparently, Mommies can be boring after a while. Oh well. We are still having fun at home doing all the therapeutic things we are supposed to. Josh is getting into his stander with his knee immobilizers, he using his head pointer and his new hand splints, and we are doing stretching and therapy on the floor. Today, we all went to music class together and had a blast getting back to one of our favorite times of the week.

Josh is making some progress already at home with some stronger arms while prone. He even said an unsolicited “your welcome” after Steven thanked him for helping to get into his chair. He’s trying to stand up when seated with his feet on the floor. There is so much still to come from Joshua. We are really excited to see how things progress.

We’re working hard to get ourselves back into a routine and find our way through piles that have grown large in five weeks. Steven is getting back into his work routine, but still enjoying our time together at home. It’s just so nice to be home together. We’ll let you know how things go while at home.

Best from home,
Erica

Thursday, April 19, 2007 9:17 PM CDT

Hi we are HOME! We arrived this afternoon with one very happy boy! He is very excited! We are all happy and tired. We will update more tomorrow.

Steven

Tuesday, April 17, 2007 9:46 PM CDT

Sorry for the delayed update. The weather knocked out our internet for a bit.

Once again, Josh is showing off his stuff. He is really enjoying therapy and is very proud of his hard work. The belly laughing is so funny because he’s now feeling well enough to goof-off during therapy. Joshua is getting much stronger. He has more endurance and is able to do things today that he couldn’t do last week. PT is going well with a newly added tall-knee workout. He is also working very well in power chair training. He is exploring the wall when he hits it and is avoiding obstacles more. Josh is willing to follow his grandparents while in the chair and loves when people watch him driving. OT is working hard on vision training. He is using his head pointer with better accuracy after his initial goof-off few minutes of showing the therapist how he can take his hat off himself when he drops his head onto the pointer causing the whole thing to fall off his head. Josh is now successfully using a book that his speech therapist at school had made a couple years ago to aid in classwork and play. The book has Velcro icons of colors, numbers, body parts, games, etc. which is all suitable for playing with Mr. Potato Head and playing board games. He is very proud to show off his skills. The OT even took Josh’s head rest off the chair to make him work harder at controlling his head. I am really impressed that he handled it all so well. Josh has even started kicking in the pool. Cool stuff!! Medications have decreased tremendously as well to allow Joshua to work harder without the sleepiness interrupting him.

The plan to get home is still for Thursday afternoon. Outpatient therapy is being scheduled and the nursing agencies involved are visiting tomorrow. I’ll plan for the DME company to deliver all Josh’s supplies for Thursday afternoon. We are planning to get back home and right into the swing of things. Josh has lots of hard work ahead to continue on his path of success. I’m really excited for all of his new skills and the many yet to come.

Thanks everyone for sharing our excitement. It’s all good! We still haven’t told Josh that he’s coming home because we don’t want him to start obsessing over “I go home NOW”. He’s going to be so surprised when we tell him on Thursday morning. It’s going to be a great homecoming with lots of squeals of happiness. We are looking forward to music on Saturday as a treat to being home.

Thanks for the visitors, food, calls, emails, treats, prayers, and support. We appreciate all the kindness and generosity. It’s been a long four and a half weeks and we are thrilled with how well Joshua is doing. We can’t wait for all to see Joshua’s success.

More to come…

Erica

Friday, April 13, 2007 9:49 PM CDT

Joshua has had two more amazing days of therapy! He is really working hard and is engaged in the rehab process. Steven and I and Joshua’s grandparents are glowing from his successes. PT and OT have been very helpful to isolate muscles and muscle groups to accomplish a task. I find it incredible to feel Joshua’s little muscles bulging and contracting with the work that he is doing knowing that he really is fully engaged in his work. The director of OT has unbelievable faith in Joshua’s abilities and has introduced amazing tools for him to use. I have already mentioned the coloring splints that he wears not just for fun, but also for work. Well, this morning, she brought in a head pointer. Yep, I was skeptical of this funny looking pointer attached to his hat. But Joshua is using the pointer very successfully to work to communicate using a board with greater accuracy and speed. He is also using it as a tool to play games, pick the color player he wants to be, and turn over cards. Did you all see the pride he is beaming across the land for his accomplishments? Steven and I are overjoyed that Joshua is successful with so much more. Hip, Hip, Hooray!!

The power chair is also an area of great success. We have Josh in the chair for small time periods for him to learn to follow and explore his surroundings. He is definitely purposefully following his grandparents. We’re watching Josh’s response to hitting the walls and he seems more aware of barriers already. Yesterday, Joshua approached the wall twice in about two minutes and stopped; he then turned his chair away from the wall without hitting. It was so exciting to see his recognition of what to do without instructions. Today, Josh did more of the same as yesterday with an added recognition component: when he hit the wall, he stopped and reached out to feel the wall/wallpaper and handrail spending time exploring how things feel. He even stopped in front of the wall once with his hand outstretched as if he was feeling for obstacles. He even purposefully moved around me when I was in his path. I’m so proud!! We’ll be trying other obstacles like brightly colored bolsters from the therapy room.

We had a great experience at the hospital this morning with Josh’s friend Carly from down the hall. Carly likes to visit Josh a lot throughout the day. This morning she came to visit while I was doing Josh’s respiratory treatments including chest PT and suctioning. She was very curious and wanted to help. She wedged her way in and held Josh’s hand for suctioning (knowing how the suctioning bit goes herself) and telling him, “It’s okay. Don’t move.” Josh thought it was a riot and loves having the company. She thinks it’s great too. I love that these children are supporting each other with their similar issues. They live the life of having big medical needs and physical needs, and it’s normal with each other. There is no fear of what each child needs. Where else can this happen? Needless to say, Carly and her Mommy, Christina, have become very special people in our life at Children’s. After dinnertime with them in our room, Carly started retching and moments later Joshua started retching. They seemed to console each other through it. As upsetting as it was to see the kids have to experience retching, we were all chuckling that this normal in our world. Carly was very worried for Joshua and once again showed great compassion. All was well as quickly as it started, thankfully.

I don’t know if I’ve even making any sense at this point, but I am truly grateful for the new friendships and for the ongoing love and support of a great many friends and family.

As we prepare for discharge, the excitement is building for life at home. We’ll have a lot more involved with home because intense therapy will need to continue outpatient and at home. But, we know that we’ll be together. (‘Together’ is Josh’s favorite word.) The support of everyone and the love we have together keeps us going each day.

Good night,
Erica

Wednesday, April 11, 2007 10:12 PM CDT

Hi all. Therapy is continuing with more and more success. Yes, we are still having concerns about Josh’s extensor tone and thrusting from his hips. In spite of it, though, Josh is making progress and really working well. Once Josh finishes his healing and comes off his post surgical precautions of not bending at the hips past 90 degrees and no trunk rotation, we will be able to stop the thrusting more easily by really breaking up his symmetrical body movements that are a big part of the unproductive movements. For now, though, we continue to give Josh a mid-day dose of Baclofen to try to control it.

In both PT and OT, he has begun working his abdominal muscles – I don’t think that he ever really isolated is abdomen in therapy before – and it’s really neat to see him engaging in therapy so well. In PT, Josh is working on power chair training and making strides in following people and stopping on command. Sheila from the wheelchair clinic wants him to hit the walls and obstacles to get the feedback and learn from the action. Josh could very well take down the wallpaper on the whole length of wall in the hallway where he is practicing. Today was a great day for power. He did really well with Grandma Ellen to help motivate him.

In OT, Josh is also working on vision training to help him improve lots of activities and power chair mobility. Yesterday, he worked with his new coloring splint as a pointer and as a tool to knock down a tower of small blocks that were moved around the table in front of him. It was really nice to see how he maneuvered the tool so well and had impressive success. The director of OT worked with Josh on the activity and commented that Josh has impressive ‘visual memory’ to find an object even if his abnormal movement patterns kick in while trying to get to the object with his hand. I love how she talked about the ‘visual memory’ because I completely agree that Josh uses his brain in creative ways to accomplish a task. It’s not necessarily negative, just a functional way for Josh achieve success.

Speech is also working on vision training and object identification but adding in the spelling component of some of the pictures she’s using. Psychology continues to work on feelings and is using his new ‘feelings’ cards successfully. She’s also impressed with how much Joshua has in his head that he just can’t get out.

I spoke with the primary MD today about expectations for the rest of Josh’s stay at Children’s. She and I (and Steven, too) feel that another week or so will give Josh a bit more strengthening to his legs and iron out any kinks in his equipment that have been causing delays in his rehab. Hopefully, we’ll all be home together by the end of next week. We can’t wait!

Thanks everyone for the continued love, support and prayers for Josh to get stronger. Steven and I are not feeling our strongest right now, but being home together will certainly help replenish our strength and energy.

That’s all for now. More good news to come.

Monday, April 9, 2007 8:13 PM CDT

As hard as it is to accept, with every step forward there is always the potential for the occasional step backward. Josh had a good morning in the pool and with therapies. He is having lots of fun with all of his therapists and is being the big flirt that he knows how to be. BUT, today we saw the return of some extensor tone and hip thrusting. It kinda feels like I’ve been punched in the stomach. My head keeps trying to tell me that it may just have been a bad day, and let’s see what tomorrow brings. My heart is aching that Joshua may become more challenging to treat. He even seemed more uncomfortable and frustrated.

The OT and PT seemed quite puzzled by Josh today. Low tone in the morning, then higher tone with thrusting in his lower extremities in the afternoon. The physiatrist, who is Josh’s primary MD at Children’s, is also puzzled and is curious to see what happens tomorrow. My head is spinning.

Tomorrow, I will need to have Josh’s orthotics adjusted again. More modifications will be needed to the stander. Josh’s power chair will need attention. And, we will be working to add extra PT to Josh’s schedule. It seems that school is still scheduled on Josh’s weekly schedule; however, there are no teachers while the school at CSH is on vacation for the week. Further, there are fewer sessions of PT on Josh’s schedule this week than last. Seems curious….hmmm.

Steven and I are wiped out. We feel like ships passing in the night. Life in a fishbowl doesn’t allow for the conversation that we need to keep going with some sense of life as usual. I keep attempting to visualize Joshua’s homecoming to help me through. I know that it will be a great day for Joshua and us all. I can’t wait.

Thanks for everyone for the postings, cards, food, and continued love, thoughts and prayers sent our way. As our reserves to continue through rehabilitation are depleted, please keep the support coming. Calls, emails, and visits (with a call beforehand) are welcome and help sustain us.

More to come….

Erica

Saturday, April 7, 2007 9:21 PM CDT

Time is an unbelievable thing. It seems to take just the right amount of it to see change.

Joshua is really getting into gear for his rehabilitation now. Yesterday was an unbelievable day for therapy. He was a hard worker for every therapist. Josh is finally into his stander with the goal to tolerate up 30 to 60 minute sessions totaling up to two hours a day. He went to Speech therapy in the stander yesterday and played with me this morning in the stander. He even tolerated his stander while we ate supper. Today continued with his success in therapy.

Joshua is starting to use his legs more! (Can you tell I’m excited?) He did some standing in the pool and is kicking both legs in and out of the pool. Josh’s head control is improving when lying on his stomach and is exceeding goals that his PT has set for him to keep it up, in midline, and looking to both sides. Josh is doing well sitting on a bench/table and keeping his body supported and head up. This is a key component for Josh’s success for driving his power chair using a head array switch access. He is expressing his pride in all that he is accomplishing as well. His big smile is warming us and everyone he meets. Stickers are everywhere (thanks to our many suppliers) for great work.

Yesterday seemed to be a day where he had more energy. I want to attribute it to not having and hour and a half to two hours of school to tire him. I really think the lighter schedule allowed him to have enough steam to power himself through the day. This coming week there is no school in his schedule because the teachers take their Spring break. I hope the Friday phenomenon continues.

Sleep is improving. Mood is improving. Toileting is improving…however, he is now waking up at 6am or earlier to go to the bathroom. The funny thing about it is that he cries during the whole thing at that hour because he wants to be asleep. Luckily, Josh goes back to sleep easily for another hour or two…and then goes to the bathroom again.

We’re giving Josh far fewer drugs at this point and are looking ahead to what to decrease next. Josh’s tone is still amazing! We’re seeing a bit more upper extremity tone when he’s over tired and at the very end of the day, but he’s not in agony because of the spasticity. Joshua is still NOT sweaty and is comfortable or cool in most things he’s wearing. Steven and I are not quite sure how to dress him because he’s never ever been cool. I love learning this. I’ll take it over what Josh had before.

Now that I see Josh making bigger progress, I look forward to the week ahead. I am eager for him to benefit from all he can get before going home. Yep, the exhaustion is unimaginable but Josh is certainly worth every effort we can give him. This kid is remarkable with his energy and attitude. He’ll keep making it all worthwhile.

Happy Easter and Happy end of Passover.

Best,
Erica

Thursday, April 5, 2007 10:00 PM CDT

I can’t even believe that Joshua has been at CSH for two weeks. I feel like there’s still so much to do; yet, both Steven and I just can’t wait to be home together with Joshua as a family. We’ve been three weeks living in hospitals, and the lifestyle is definitely wearing on us.

Most importantly Joshua stuff: He has been doing some good work with therapies. The speech therapist is having fun with Josh identifying pictures in a field of two by clues or spelling. He’s even being a bit of a stinker for her. At least 75% of his answers are correct. I’m so proud. The OT is doing work with reaching and balancing. Let’s say that our times for therapy have been challenging due to the after meal “food coma” or other issues that come up. The PT is working on Power Chair training and getting him ready for standing with new orthotics. The power training is slow, but she remains positive. The orthotics are finally tweaked well enough as of late this afternoon. Tomorrow should be our day to get him into the stander and get a schedule set for daily weight bearing activities. I’m especially looking forward to seeing Josh weight bearing. Psychology has been working on identifying emotions and making him his very own emotions cards to have with him to help with communication. He correctly identified every card today with only one error.

THE POOL!! Josh really loved the time in the water and relaxed quite well. He had a very little bit of leg movement and passive participation. It was the end of the day and his first time in the pool, so I’ll cut him a break. Looking forward to another fun day in the pool tomorrow.

School at CSH is done for the week and is not in session next week due to their Spring vacation, so that should give us a bit more of a chance to catch our breath and focus a bit more on therapy and outside therapy activities, like stander time, power training, stretching, and sitting. I really can’t wait because the schedule has been exhausting for us.

We are truly impressed with all that CSH has to offer. Joshua is definitely benefiting from it all. The staff and therapists are all so focused on each child’s success, and it shows in the many success stories that come out of this hospital. We are glad that Josh has the facility available to him. We’ll continue with CSH in the outpatient department after discharge as he continues in his rehabilitation. It will be a long road…

So far, Josh is not asking about home except for the occasional “I go.” We are not letting anyone say the word “home” in his presence so that he will stay focused. So far so good.

Steven and I are just ready to get a bit more intense therapy with Josh and then get home to be together. The last couple days have been tough. Enough said.

Thanks for the continued support and love. It’s now that I feel we need it most as we get into the home stretch.

I’m off to bed.

Erica

Tuesday, April 3, 2007 8:49 PM CDT

Josh is back at work. These have been two very busy days. There were big scheduling challenges for yesterday, so our usual running around was a bit more complicated with some extra tail chasing. At one point, I was sure we would actually get that tail and bite our behinds! In spite of the extra chaos, Joshua is working himself to exhaustion. He is doing good work with all of his therapies. Children’s Specialized Hospital has been quite amazing to help Josh succeed both medically and with rehabilitation. We are rather in awe of all they do.

Highlights:

Josh had coloring splints made for both hands. They are too cool. He was very tired once he got to try them out, but he did a really good job coloring by himself. I’m a very proud mommy.

Josh has started power chair training with PT and vision testing with OT. Yep, I have been rather discouraged by Josh’s driving skills. However, it seems that all the therapists are very confident that with Josh’s current driving skills, training, and further technology enhancements Joshua has the potential to be a great power chair driver. They have even helped people with virtually no vision to drive! I am hopeful. Josh has a whole lot of spunk.

We are looking forward to getting new orthotics tomorrow so that Josh can get going with some leg work. I think this will definitely be a bit more exhausting for him. I’ll be bring his stander to the hospital so that he can get an hour or so of standing time in everyday. (I’m not exactly sure at what time that would be in his very busy schedule…actually, it will be during OT, Speech, or Rec Therapy.)

Although we thought the pool would start yesterday, Josh will be swimming tomorrow for the first time. How exciting!

Passover was great for us all. We all went to Steven’s parents. My parents were also there with lots of Gendel family. It was a hoot. Joshua shared the Four Questions with his little cousin Jared, who did a great job! He and Audrey were delish! The outing for the evening was very needed.

Happy Passover to you all.

Thanks for the continued stream of cards, emails, calls, etc. Love the stickers that keep coming, Christopher. Josh’s class made cards for Josh that are too cute. We appreciate all the love, prayers, and warm wishes that keep coming our way and sustain us during the chaos of rehab.

G’night.

Erica

Sunday, April 1, 2007 9:37 PM CDT

Hey all. Joshua is one tired boy! The last week is still catching up to him so he was quite tired even for a weekend with just two therapies. The great part of the weekend was permission to take Josh out for a couple hours at a time. He loved the outings but tired easily. I guess that he’s still also healing from the big surgery.

We’ve gotten Josh’s schedule for the coming week late this afternoon. Oh my gosh! I am exhausted for him. Tomorrow, he’s supposed to start at 8am and end at 4:30pm with minimal breaks. I don’t think it will work out considering we’ll be taking him out for Passover seder in the late afternoon. It should be an easy fix to the schedule once we speak to the right person. Tuesday’s supposed to be an intense day as well with easier days later in the week. Hmmm. I’m looking to spread the wealth of therapy. In actuality, the easier schedule later in the week may help us to work on the stander with new orthotics and power chair training. We’ll see how it works out.

Not too much else to report tonight.

Thanks for the continued prayers for Josh’s strength, health, and wholeness.

Happy Passover to all who are celebrating.

Erica

Friday, March 30, 2007 10:05 PM CDT

Good evening. What a week!! Joshua worked so hard and is so tired from being a very strong worker. Yesterday, he was amazing. He worked so well at all his therapies and even school. He did an amazing job and he knew it. All the therapists gave him stickers for being a great worker, and he was looking like a sticker book by the end of the day. He must have had a dozen or so stickers. I am so proud of him.

At PT and OT, Josh did great trunk and head work. It was remarkable. He was engaged in the activities and responded so well to instructions and questions. At Speech, Josh amazed his therapist with his ability to answer questions using pictures and spell small words. She never expected Josh to be able to do the work he did. At Psych, Josh identified feelings using hand drawn emotions faces. The plan is to help him ID his feelings using cards on a ring. She will work with Speech to make it happen. At school, Josh did good helping to count, do hand over hand crafts, and reading. He was even verbal with many of the therapists. I love it!!!

We had a meeting with the folks at the hospital yesterday. Josh was helpful at the meeting and expressed his opinions. We have already reached a goal to be independent with Josh’s care…hmmm. Overall, everyone is happy with Josh’s progress, ability to tolerate a full day of therapy, and motivation to work to get stronger. We can’t ask for anything more.

Today was not quite the day it was yesterday, but it’s the end of a hard work week for Josh. He still earned some stickers from his PT.

Josh has been asking to use the bathroom, so we brought his toilet chair to him from home. He will be starting to use his power chair over the weekend to start power-chair training. The pool is on the schedule for next week. And, we can take Josh out over the weekend for short trips. Passover will definitely be an out afternoon. All is good.

We saw Dr. Fried (aka Uncle Arno) today with a good report. Josh’s back looks great! He’s healing well with no concerns. Dr. Fried was glowing when we told him about all the amazing changes we’re seeing. He is excited to see what more is to come in the next few months. We read some of the letters from families in the doctor’s office and agree with everything, but one in particular stands out for us. A girl, of unknown age, wrote a school assignment titled, “My Hero” about Dr. Fried. Most significant to us was how she wrote about his demeanor. It read something like, ‘When Dr. Fried enters a room to meet with you, he glows with hope and excitement of what can and will be for the child he is treating.’ I’m not doing the letter justice at this late hour, but it was really meaningful for both of us as we see incredible things in Josh’s future and feel the presence from Dr. Fried giving us nourishment to continue on. I asked him for a crystal ball so that we can have a glimpse into the future. I’m just too excited to wait.

Thanks everyone for the visits. Pat it was great to see you; thanks for the goodies. Julie and Scott, sorry it was so chaotic; it was really nice to see special friends. Rich, love the warm hugs and smiles. Family faculty…you rock! Thanks for the support. Thanks for the yummy food the Grossbaums, Orbachs, Bernstiens and Teppers. Having Shabbat together with food from special people makes the day more bearable. Josh was thrilled to pull the cover off the challah for the blessing.

The cards, stickers, emails, calls, web posts are amazing. Please, don’t stop. We’ve got a bit more time to get through life in a hospital and need the nourishment of our souls.

With excitement for many more great days ahead….

Erica

Wednesday, March 28, 2007 9:05 PM CDT

Rehab is not for the faint of heart….We are soooo exhausted from the very hard work. Yesterday and today were whirlwind days with me working to find even a minute to change Josh and take care of his feedings. Therapy is going well. Of course, Josh is socializing well with all of his therapists and caregivers. He is expressing his dissatisfaction with certain aspects of therapy and his exhaustion with some crankiness. Josh is becoming known throughout the hospital for his impressive pout. I’m so proud of him for letting us know that something doesn’t feel good, but the lip is just too cute.

Josh has no significant pain at this point. He continues to respond well to his current doses of medications with the occasional skipped dose because he’s a zombie on wheels. We are seeing some spasticity in his upper extremities but it is still far better than it ever was. Now, we want to see some strength come from his legs. So far, he’s not too interested in standing. His legs are quite floppy. Strength is coming…

So get this….Josh is already scheduled for two sessions in the pool next week. He has been casted for new orthotics. Plans are in the works for big time power chair training. Josh will be spending about an hour a day in his stander starting mid next week. And, he will continue with the current therapy schedule of PT 2-3 times a day, OT once a day, speech therapy 3 times per week, psychology, child life, and recreational therapy as well as school 2-3 times a day.

Going home will be a vacation when the time comes. We are not saying anything about home to Josh and he’s not asking yet. Plans are to go out for Passover on Monday for seder. We should be able to take Josh out over the weekend as well for day trips, just no overnight stays out. It’ll be a nice change of scenery. Even going to Hackensack for a doctor appointment on Friday will be a nice change of pace.

Steven and I are adjusting to life at the different hospital. So far so good. We’ll find out more about Josh’s goals and expected length of stay tomorrow at his Patient and Family Meeting.

Thanks for the continuous stream of cards, calls, emails, etc. It is nourishing our souls.

Best,
Erica

Monday, March 26, 2007 10:30 PM CDT

The week of therapy started in earnest!! Josh’s first session was bright and early at 8am. Even though it hurt a bit to be ready by then, he did really well. Today, he had three sessions of physical therapy (PT), a session of occupational therapy (OT), two sessions of school, and a session with child life. Wow. It was jam packed. Tomorrow and Wednesday are even busier. I’m exhausted for Josh. But hey, that’s what rehab is all about. Josh is handling it all well, but he did not quite know his name by noon today. Even with a hard nap, he was pooped out. Hopefully it will positively affect his sleep. Sleep hasn’t been too bad now that his drugs are straightened out. Josh wakes up a couple times in the night and we are working on him getting himself back to sleep without prn drugs. He really doesn’t need them anymore. It’s amazing.

The overall results of the surgery are incredible, and we are thrilled that Josh is so much more comfortable and content. Josh was a bit chilly today and needed a sweatshirt! Astounding…he was always hot and sweaty from all the tone. I can’t ever remember putting a sweatshirt on him. Josh is telling us that he likes his legs “listening to his brain”. He really is so much more content. He’s not as frustrated and is more patient.

Josh is still okay not being home. He’s only asked about “home” about 2 times. He is saying “I go” indicating his desire to just keep moving. Today’s “I go” was only first thing this morning; he was too tired to even think about it after that. Looking forward to more great things tomorrow….

Thanks for the continued outpouring of support during our crazy weeks of rehab. Lots of cards, emails, calls, balloons, and food. It’s all good!

Off to bed.

Erica

Saturday, March 24, 2007 10:12 PM CDT

The past few days have been rough while getting used to the new digs and the routine at Children's Specialized Hospital. The biggest difficulty is Josh's discomfort. Unfortunately, his first two days were awful. Last night, I was at my wits end unable to comfort Josh while he was inconsolably writhing in pain and exhaustion. Even with multiple prn doses of some heavy duty drugs, nothing was working to help him quiet his body and finally sleep. I was even sobbing with guilt that we had chosen to put Josh through this misery in our efforts to help him. Then, of course, Joshua became even more upset listening to me cry my eyes out. Oy, it was a messy scene.

Finally at 11pm, I looked more closely at the routine meds the nurse brought in for Josh and reailzed that his neurontin dose was a fraction of what it should be. He was taking 600mg twice a day when he came from Hackensack and the dose he had been getting the whole time at Childrens was only 250mg! Oh my gosh!! I was filled with horror and relief at the same time. No guilt is laid on anyone in this situation because it could have been my fault at conveying the wrong information upon admission, or it may have been the admitting doctor's fault. The fact is that it just doesn't matter. With the proper dose, Josh slept soundly from about midnight to 7am. Phew.... He's still quite behind on his usual sleep quota having been awake a whole lot for three consecutive nights and having had big surgery so recently.

Josh had a much better day today!! He finally started therapy and had a session each of OT, PT, and Rec Therapy. It was really great. He worked hard and was proud of himself. Yup, he even flirted with the therapists. I am so proud of Josh's hard work to get strong. There's no therapy on Sunday, so we hope that Josh can catch up on some sleep and be ready for a full day on Monday.

Highlights of the day: A bath in a really cool tub, therapy, visits with family, and a new friend from down the hall joining Josh to watch a movie on Josh's portable DVD player (too cute).

Steven and I feel so much relief that Josh's fighting nature and better pain management will make his way through the challenges ahead. Our prayers are that Josh should have the wholeness and strength that he is so ready to receive.

Thank you all for sharing our prayers and offering your own. The cards, balloons, calls, emails, food, visits, web postings, web hits, thoughts, love and prayers are incredible and enormously helpful. It is nourishing our minds, bodies, and souls.

Good night.
Erica

Friday, March 23, 2007 1:33 PM CDT

Transition Day! Sorry it has taken so long to update. The past few days have been tiring. Joshua was transferred yesterday to Children's Specialized Hospital in Mountainside for rehab. Needless to say it was a long day.

We are slowly getting acquainted with new/different surroundings. The great part is that Joshua will start intense rehab therapy 6 days week starting on Saturday. We also have more freedom to move around the facility since we are not on monitors like the PICU.

The downside is cramped quarters and a new place that we are getting used to and they are getting used to Joshua and us. Overall, Joshua is happy. However, he is still having trouble sleeping with spastic/nerve pain movements and we are trying to figure out how best to control them with medicine. The past 2 nights he went to bed easily only to be up by 11 PM and screaming with discomfort until 3-4 AM when he crashed with the right medicine on board.

Today Joshua woke up happy and ready to go for his therapy evaluations. In fact I think he loved all the attention from the therapists. After about 45 minutes though you could see that he was getting tired and he even gave them some lip and frowned. He was also beginning to have increased tone in the upper part of his body. Hopefully, the medicine will balance everything out and he can feel better and we can relax.

All in all we will tough this one out. We started off today feeling very unsure about this whole rehap therapy process. We soon realized that even though the transition was tough we have to give the therapy a chance so Joshua can learn to use his new muscles. So it is full speed ahead and we will maximize what we can for Joshua. The amazing thing is that our move Joshua has started to say two new words very clearly, one was "right" the other "God". Needless to say we are happy with the overall surgery and this is just another step in the process.

Anyway that is all for now. Thank you all again for your kind words, thoughts, and wishes. We really appreciate everyone's support.

Steven

Tuesday, March 20, 2007 9:52 PM CDT

This has been a far better day for Joshua! He woke up with a big smile on his face…I knew today would be quite a new day. (Collective sigh of relief is appropriate here.) Joshua was still mellow today but more interactive. He had no pain except a little bit when moved out of bed a couple times for a therapy assessment and while the bed was changed. He answered questions and appreciated being part of conversations. He is even ready to say ‘thank you’ to Dr. Fried (aka Uncle Arno) for helping fix his legs so that they will listen to his brain better. Josh laughed and talked and even sang with Grammie Marilyn for his favorite song. It almost seems as if his voice is getting clearer and stronger. The best part is that Josh is comfortable and not complaining. He is actually sitting up in bed with the bed in the full upright position without pushing his body out of position.

Medically, Josh’s IV blew today just short of 24 hours when it was put in. Fortunately, I was able to help him advance his gastrostomy feedings to levels near what will keep him hydrated. Steven will continue to advance the feeds tonight while he sleeps to assure hydration. Although the feeding is still at half strength, we need to at least keep him hydrated. Tomorrow, I will work to help Josh advance his feedings to ¾ strength and possibly increase the rate so that we can give a break between “feedings”. Josh’s wound is healing well and does not seem to be causing him any major discomfort. The doctors, nurses, and everyone at the PICU has been unbelievable to help Josh through. We are blessed to have such an amazing place for him.

Highlights today are having fun with grandparents (all four); smiling and laughing with everyone in the hospital; and tolerating feedings better. Josh has also needed no prn (as needed) meds today or yesterday and did not get all his routine meds that he normally needs. His body is quite relaxed as it is. Thankfully, the dose of Neurontin that Josh is taking is meeting his pain needs.

We know tomorrow will be an even better day and we are preparing for transfer to Children’s Specialized Hospital for Thursday so that Josh can get stronger. We’ve got lots of anxiety going into a new place with lots of unknown factors, but we will all be together for the big move. One day at a time and one hour at a time, we will make it all work.

Thanks for the love, prayers, visits, calls, cards, web posts, web hits, and more food. It has been really important to get us all through. We are already feeling happy with the results from surgery. Every day will be even better with continued support from so many.

Sorry if I rambled. I need to go to bed now.

Erica

Monday, March 19, 2007 8:19 PM CDT

Good evening everyone. I just got home so hear is the update. Joshua finally slept from Sunday night into Monday. We hit him with some hard medications and he slept most of the night.

Monday was a mellow day for him which was fine with us. He was very sleepy, juicy, retchy, and quiet but we did get a few smiles. Joshua also needed a new IV today as he blew the one in his foot. Surprisingly Dr. Friedman was able to get one in his hand. We are also trying to get Joshua back up to regular feedings. Right now he is on half strength formula. Our goal is to get him up to full feeds before we lose this IV. This is important for hydration since Joshua is such a tough stick we really want this one to hold while we increase the feeds.

We are still hoping to get to Children's Specialized Wednesday or Thursday. The amazing thing about this surgery is that we are actually able to ben Joshua's legs! They are moveable! This amazes me considering all the tone he has had.

Anyway, since it has been a long few days I am going to sign off for now. Thank you all for your kind words, prayers, emails, and support. Here is hoping that tomorrow Joshua has an even better day.

Steven

Sunday, March 18, 2007 9:47 PM CDT

It's definitely been a rough couple days. Josh is in significant discomfort from neuralgia (aka nerve pain). The neuralgia is a result of the surgery and the severing of the many nerve rootlets. Unfortunately, this kind of pain does not respond to the usual analgesics for other kinds of pain. We are working hard with the neurologist and intensivists to figure out a way to allow Josh to sleep and not be screaming all day. His body is spasming and is hypersensitive to everything. Thankfully he is connected to lots of monitors because, quite frankly, the drugs he is getting are really messing around with his vital functions. Just yesterday, Josh needed reminders to keep breathing. Fortunately, we added Ativan to Josh's medication cocktail tonight and, last I spoke to Steven at the hospital, Joshua was sleeping soundly with blow-by oxygen.

Steven and I are beside ourselves not able to comfort Joshua through his agony and misery. Today, I finally got to snuggle with Josh a bit which did calm him for a little while. Each of us took turns comforting Josh and trying to help him through another minute. Exhaustion has come to a whole new level.

We continue to pray for at least a smidgen of improvement each day as Josh makes his way through the neuralgia. Our hearts are aching for him. Everyone keeps saying that Josh will be a new child two weeks from now, but two weeks can't come fast enough. I would love to have the 'Bewitched' dinkle-dinkle nose so that we could fast forward time. If only....

Thanks for the prayers, warm wishes, love, calls, emails, postings, food, and many cards. It is all helping us to get through this very challenging time. Prayers for an easier tomorrow...

Erica

Sunday, March 18, 2007 11:18 AM CDT

Happy Sunday everyone. It has been a long few days. Joshua has been very uncomfortable to say the least. He is having some severe nerve pain and trying to control it has been an issue. We are now able to sit him up in bed more than before so that is good. However, the drugs we are giving him to control the pain have had some weird side effects. Yesterday they knocked him out so much that he would fall asleep and forget to breathe. Last night we tried to mix the meds up a little but it did not provide any comfort and Joshua was screaming. Finally around 11PM last night Joshua settled down and fell asleep.

This morning he woke up and we cleaned him up with a sponge bath. After getting some medicine on board to control the pain he is not as sleepy. He is sitting up in bed more and is very happy to see his grandparents. Overall we are hoping looking to have a low key day, reading books, singing songs, maybe even watching a movie or two.

Thank you again for all your support and kind words. Joshua is on the mend and we hope to transition to Children’s Specialized Hospital on Wednesday or Thursday. We will update more when we can.

Steven

Friday, March 16, 2007 8:55 PM CDT

Hi everyone thanks for checking in. Joshua slept very well from Thursday into Friday, over 12 hours of good sleep. He is back on his regular medicine schedule and this has helped tremendously. Dr. Katz came by today and said we would be slowly taking down his medications starting with some of the Baclofen. The med decrease will happen over the next several weeks.

Joshua’s attitude was great today. Although he was tired we did get a fair amount of his famous smile and laughs. When some funny things happened today, Joshua laughed right along. He gave big smiles to Grandma Marilyn and Pop Bobby while they visited this afternoon. Joshua also spoke on the phone to Grandma Ellen and Pop Pop Paul, stuck at home due to the snowstorm, and laughed while he spoke to them. Though he is not 100% yet it was nice to hear him converse with his grandparents and they are all relieved too.

Dr. Fried came by check on Joshua and to confirm that we will be going to Children’s Specialized Hospital possibly Wednesday or Thursday next week. Joshua even gave Dr. Fried a smile. Based on our conversation with Dr. Fried later tomorrow we will be able to slowly sit Joshua up a little bit and in the next few days re-start his feedings.

We would like to send a big thank you to Toba and Chavi for sending Shabbat dinner. Joshua enjoyed saying the blessings and uncovering the Challah with a huge smile on his face.

Thank you for all of your messages, prayers, and kind words. It really helps us get through the long days in the PICU. More good news to follow.

Steven

Thursday, March 15, 2007 8:38 PM CDT

Good news….Josh’s surgery was impressively successful. Joshua had Selective Dorsal Rhizotomy (SDR) today. The procedure is pretty neat. It’s not a new type of treatment for severe spasticity, but it is used less often since intrathecal baclofen pumps have been around in the last few years (not a great option for Josh).

SDR is quite interesting (google it for the exact info) in that Dr. Fried opened up Josh’s lower back and lower spine to isolate the return nerves from each leg to the spine. He then opened up those nerves to isolate each rootlet (I like to think of rootlets as the fiber optic cables caring information back to the spinal column and then the brain). When stimulated, the rootlet gave either a normal or abnormal response. Those rootlets that gave abnormal responses were then identified to be severed. In all, Josh had about 60% of the rootlets severed. It’s pretty significant indicating that he had a boat load of tone. Hmmmmm.

Recovery has been interesting as predicted. Josh had some bleeding during surgery, so at this time we’re waiting to see where his current levels are. He had severe discomfort from pain and anesthesia upon arriving at the PICU and took some time to get comfortable. In fact, he may have had some withdrawl from his routine medications. Josh also did not want to breathe really well after surgery, so it took some time for him to be stable enough to even get from the OR to the PICU. Fortunately as Josh became more comfortable, so too did the breathing. The heavy duty morphine is also causing retching and vomiting….not fun for anyone.

Right now, Josh is much more comfortable and sleeping on his stomach as usual. Steven is spending the first night at the hospital and working to get medications fully straightened out. First night is always exciting and Steven handles it far better than I do. (Team work is essential here.) We’ll swap tomorrow night.

The plan for the next 48 hours is that Josh must continue to lay flat (back, stomach, or side). Dr. Fried informed us that Joshua will be quite uncomfortable for that time period and will continue to need lots of meds for pain management. He may also have lots of sensory discomfort to his legs causing the sheets to be irritating to his skin and/or his legs to have a burning sensation.

Joshua’s team is managing his care as best they can at this point. As Joshua gets through each hour and each day, we should all see improvements.

Looking forward to more comfort for Josh……

Thanks everyone for the warm wishes and prayers. We are excited for what’s to come and love sharing it with you all.

Erica

Monday, March 12, 2007 1:49 PM CDT

How is it that time flies by so quickly. Sorry that it has been so long since our last update. Josh took a bit of time to heal from the surgery in July but was feeling great by the time school started in September. He's enjoyed two vacations since the Summer. The first was to a house on Long Beach Island at the Jersey Shore. The second was in January to his favorite place...Walt Disney World! He had a blast and is already asking to return for some more fun.

School has been going well with a great teacher this year who is really helping everyone see that there is so much more great cognitive stuff in Joshua that we are all waiting to see. Miss Cara sees so much potential in Josh if his body would just allow him to participate more in his education. She also sees so much BOY in Josh...there is always laughter following sneezes, coughs, farts, and anyone's oops, ouch, or fall.

Everything was going along quite well medically until Thanksgiving when Josh's routine hip x-ray showed a partial dislocation in his left hip. Although the pain and discomfort that will often accompany adult hip problems can be severe, pediatric hip dislocations don't always accompany the same discomfort thankfully. However, correcting the hip first requires Josh's severe spasticity to be managed more efficiently with surgery. The spasticity (aka high tone) caused the hip to dislocated because of the constant pulling and pressure exerted on the hip.

Sooooo, after much discussion with many of Josh's doctors and very caring people in Josh's life, we came to the decision of how to best address Josh's spasticity. Joshua is scheduled for surgery on Thursday, March 15th at Hackensack University Medical Center (HUMC). Dr. Fried will be performing a surgery called Selective Dorsal Rhizotomy (SDR). It's a pretty big surgery that will give Josh his best opportunity to get rid of his spasticity permanently and avoid future orthopaedic problems. The plan is that Josh will be at HUMC for about a week and then will need to go to Children's Specialized Hospital for his first inpatient rehab stay for about 3 weeks for intensive rehabilitation.

I'll give the particulars in the updates to follow. Please send prayers and warm thoughts of health and wholeness for Joshua. We are very excited about the great possibilities in store for him once he has this procedure. Of course, we have anxiety going into a big surgery (at least 4 hours), but Joshua's energy and spirit will get him, and us, through.

Best,
Erica

Monday, March 12, 2007 1:49 PM CDT

Saturday, July 29, 2006 9:13 AM CDT

Joshua is so happy to be home! He is working hard to heal. Lots of sleep and hanging out at home are the perfect prescriptions for healing. We are all feeling so much relief being able to sleep in our own beds and having time together. Josh is back to retching and pooping. All systems are go. The heat has not been fun for Josh. We are planning to stay home for the next week until this heat wave passes.

Josh really enjoyed having Shabbat dinner together at home last night. He had lots of smiles and even helped saying the prayers. These moments are the stuff of life that really matters. We are so grateful for our many blessings.

Thanks everyone for the cards, calls, emails, meals, and visits. We really appreciate all the support. It makes getting through these tough times a whole lot easier.

Can't wait to be back in the swing of things this Summer...

Erica

Wednesday, July 26, 2006 2:16 PM CDT

We're home!!! Joshua is feeling much better but is quite exhausted. We are all a bit on the tired side. We'll update more tomorrow.

Erica

Tuesday, July 25, 2006 8:30 PM CDT

Joshua said it..."I go home." That's how we're all feeling. Tomorrow should be the day. We've seen Joshua show steady improvement over the last two days. Actually, he looks amazing. You really wouldn't know why he is still in the hospital until looking at his feeding pump to see at what rate he is being fed. Okay, he is a bit tired because he is still healing from a very big surgery. All in all, we are happy that his stomach has been working.

Joshua's last IV blew this afternoon, so he is working on keeping hydrated with his current stomach capacity. We are very hopeful that he'll be increasing his feeding rate successfully through the night so that we can just get home. Then, we'll work on getting the feeding schedule back to 3 meals a day and a 10 hour feed overnight. Most families would be staying longer in the hospital to accomplish this task, but we are going to give it a go at home with daily calls with the Gastroenterologist.

Josh is quite spastic, but I think it is attributed to boredom, need to be in his wheelchair, and exhaustion while healing. We're managing with lots of prn (as needed) meds to keep him comfortable as well as lots of snuggling.

Thanks for all the well wishes for Josh's speedy recovery. He loves all the cards, especially the construction paper cards from his classmates and cousins. He loved the visits from his teacher and PT. Thanks Daryl and Amanda.

My family is healing and greatly appreciate the hearfelt wishes of sympathy. Thanks for helping us all heal.

Our next update should be from home...

Best, Erica

Tuesday, July 25, 2006 8:30 PM CDT

Joshua said it..."I go home." That's how we're all feeling. Tomorrow should be the day. We've seen Joshua show steady improvement over the last two days. Actually, he looks amazing. You really wouldn't know why he is still in the hospital until looking at his feeding pump to see at what rate he is being fed. Okay, he is a bit tired because he is still healing from a very big surgery. All in all, we are happy that his stomach has been working.

Joshua's last IV blew this afternoon, so he is working on keeping hydrated with his current stomach capacity. We are very hopeful that he'll be increasing his feeding rate successfully through the night so that we can just get home. Then, we'll work on getting the feeding schedule back to 3 meals a day and a 10 hour feed overnight. Most families would be staying longer in the hospital to accomplish this task, but we are going to give it a go at home with daily calls with the Gastroenterologist.

Josh is quite spastic, but I think it is attributed to boredom, need to be in his wheelchair, and exhaustion while healing. We're managing with lots of prn (as needed) meds to keep him comfortable as well as lots of snuggling.

Thanks for all the well wishes for Josh's speedy recovery. He loves all the cards, especially the construction paper cards from his classmates and cousins. He loved the visits from his teacher and PT. Thanks Daryl and Amanda.

My family is healing and greatly appreciate the hearfelt wishes of sympathy. Thanks for helping us all heal.

Our next update should be from home...

Best, Erica

Sunday, July 23, 2006 8:12 PM CDT

Hi everyone, thanks for your encouraging words of support. We really appreciate it! Today was another good day in terms of Joshua acting like himself again! He was in really good spirits all day, smiling and enjoying all the company.

Joshua had lots of visitors today, Aunt Wendy, Uncle Jeffrey, Cousins Jared & Audrey, Ms. Daryl (his teacher from school), and all of his grandparents! Needless to say with all the company he was tired by the end of the day.

We are slowly and I mean slowly starting him back on feedings. Last night Joshua had trouble with a small amount of Pedialyte so we had to stop it until this morning. He went about 10 hours with the smallest dose possible today. By this evening we where able to up the dose by 5 ml to 10 ml per hour. Hopefully tomorrow we will be able to increase the rate of his feeding.

The only other big issue from yesterday was his IV sites. It seems that besides being a tough stick he also has IV blowouts because of the severe spatiscity. One was so bad that his arm completely swelled up because the IV was out of the vein but under the skin. After several sticks yesterday Dr. Percy was finally able to get an IV in Josh's foot. We are hoping it holds until we can get him back up to speed with his feedings.

All in all though Joshua is acting like himself, wants to be busy, does NOT want to stay in bed and is happy when we are all together or has visitors.

Erica's family wants to say thank you again for all the support with the recent passing of her Grandmother. On that note we also had a sad event here on Sunday in the early AM when a 13 yr old boy lost died in the PICU. It has truly been an emotional rollercoaster around the unit but the nurses where amazing with this family. They stayed late well after their shifts were over to comfort and support this family. It is an amazing to see how the staff here works together to help us and others. The bright side to this tragic event is that the family decided to donate his organs which will give others a chance for life!

Alright enough of the sermon, thank you again for all the support, prayers, and well wishes, we appreciate it.

Steven

Saturday, July 22, 2006 9:23 AM CDT

Good morning! It is a good morning. Joshua is feeling a lot better. He is actually still sleeping and had a very good night sleep on his stomach. Phew. We are all relieved that Josh is catching up on some much needed rest. Unfortunately, his IV site blew late last evening and had to be restarted. It did not seem to phase him much because he already had some night medications on board. Yep, yesterday we started Josh's usual Gtube medications. He has tolerated them well. His bowel sounds are very slight, but he's doing ok with the meds. Today, we are going to start him on some pedialyte to see how he tolerates more stuff in his stomach. If it goes well, we'll advance to half-strength formula. Josh's antibiotics are done, so once we are sure that we can keep him hydrated, we'll be able to go home.

Everyone here at the PICU has been wonderful. Josh is happy to see familiar faces. He loves seeing his family when they visit. Smiles returned yesterday with some giggles too. Such a relief. Joshua is such a trooper. Sometimes, I can't believe the amount of strength he has to get through some really tough times. He keeps us all going with his strength.

Thanks everyone for the good wishes for my family. Shiva will be through Sunday. Our family feels good about the send-off at the funeral and has no regrets about her care for her last few weeks. Healing has already begun.

Thank you everone for your support and care for us in the hospital. The warm home cooked Shabbat meal was incredibly nurturing. Thanks for the emails, guestbook entries, cards, calls, and visits. Taking people up on offers of help is not my strong suit, but you all have made it comfortable....Thank you.

Erica

Thursday, July 20, 2006 10:13 PM CDT

Hi all, a quick update. It was a long day today. We gathered in Clifton to say our goodbye's to Erica's Grandma Rae. A huge amount of thanks go to our friend Pam and Josh's nurse Pat who watched him this morning so we could be together for the funeral.

After the funeral I went back to the hospital and Joshua cracked a small smile as Daddy showed up. We are keeping things mellow so Joshua can heal. This evening he had some breathing difficulty and we are trying some additional respritory therapies. The other challenge today was getting a new IV line into Joshua. He is a tough stick and proved it again but finally one of the doctors was able to get in the IV.

We are keeping Joshua's bed elevated to help with the breathing. Aunt Wendy and Uncle Jeffrey visited this even after paying a shiva call at Erica's parents house. Joshua gave them a nice smile.

When I left he gave us a huge smile as I gave Erica a goodbye hug and kiss, those smiles are worth everything. All in all it was a long day and we are tired but it is nice to see a lot of old hospital friends who care deeply about Joshua. We are planning on another mellow day and if things go as planned will try to feed Joshua a little on Saturday.

Thanks again for all of your prayers and good wishes for Erica's family and for us.

Steven

Wednesday, July 19, 2006 8:38 PM CDT

Hi all. Quick update…

Joshua is healing and resting today. He’s definitely in some pain, but it seems to be easing a bit. Without Joshua’s usual medications because he is not able to have anything in his stomach at this point, spasticity, seizures, and pain must be managed by IV meds. Converting the ususal meds is not the easiest thing to do. For now, he seems comfortably “stoned” on ativan, phenobarbital, and morphine. Joshua finally smiled this evening…he will surely be feeling better and better.

Sadly, I am also reporting that my grandmother (my father's mother) died this morning. Our whole family is relieved that her suffering is over and she is now at peace. Thankfully, she was well cared for at the end and had many visits from her family. As my nephew said it, “It’s like putting a big Love Bubble around Grandma Rae.” I’m sure she felt the love. A dear friend and a special caregiver will be sitting with Joshua tomorrow so that Steven and I can attend the funeral together and be with family for the morning.

I’m feeling very sad and wish I could be in multiple places at once. If only cloning were an option.

Thanks for the love and prayers. More to come…

Erica

Tuesday, July 18, 2006 4:41 PM CDT

Hi all! Joshua had surgery today. Although it was planned, it was planned just in the last week and a half. Unfortunately, Josh's reflux had gotten much worse with lots of retching and vomiting. The vomiting was actually quite scary because he was doing it with little warning, even while sitting in his wheelchair. Previously, he was vomiting just while laying down after a feed. So, the result was surgery to correct his nissen fundoplication. As an added bonus, a hiatal hernia repair was part of the fun. Josh's surgeon knew the surgery was necessary after calls from Josh's Gastroenterologist. When he saw us in the office, Dr. "Pop-pop" Valda let us know that he'd prefer to have another surgeon, Dr. Friedman join in the OR party.

Joshua is recovering from surgery this evening in the PICU. Pain is mostly being managed, although he's quite uncomfortable. I think it is understandable from having his stomach and abdomen messed around with. What was possibly as short as 2 hours became over 3 hours of a fully-open surgery. Josh is going to be rather uncomfortable for a couple days and will be here at Hackensack University Medical Center for about a week.

Unfortnately, we have a family crisis in the midst of our concern for Joshua. My grandmother is not well and on hospice. Our love and wishes are with Joshua and my family during this crazy week.

More updates to come.

Erica

Wednesday, July 5, 2006 10:16 AM CDT

It’s been a very long time since our last update. All is very well. Joshua turned 7 this past May with lots of fun with family and friends. He is a proud 7 year old and loves to talk about it! As a special gift for Joshua’s birthday, he had a power chair demo! We all expected that Joshua would do well, but he did amazingly well using THREE head switches and his hand switch for reverse! I was, of course, crying watching my child make his chair move on his own. The therapist and engineer from Children’s Specialized were jumping up and down. Joshua wore a grin from ear to ear while following the therapist and following instructions to stop his chair. After a half hour of working, he was pooped out. We have hopes of a chair to play with over the Summer.

Joshua also surprised us in showing us that he knows how to spell! Who knew?!? Well, he differentiates words on a Magnadoodle and spells on a letter board. He spelled his name, Mom, Dad, cat, dog, love, go, feet. We can't wait to keep finding out what is in Josh's head. Lots of exploring for us all to do.

Steven is very busy working this past month with lots of new listings. I’m working already for the new Mary Kay Seminar Year with big goals of achieving National Court of Sales and Car Driver Status.

We had lots of family celebrations in the past couple months with Josh’s birthday, Grandma Rae’s 90th birthday, out 10th Wedding Anniversary, and my parent’s 40th Wedding Anniversary. We are all partied out and glad that the family was together to celebrate.

Enjoy the Summer!

Erica

Saturday, October 1, 2005 8:47 AM CDT

Well, it has been an interesting week. Several things happened both planned and unplanned that changed the week.

Here are the details. First, last Sunday Erica had a run-in with a very sharp kitchen knife and her right hand, her dominant hand. Let’s just say the kitchen knife won. Erica cut her right hand, middle and ring fingers severely. After stopping the bleeding, which took 45 minutes; we where able to bandage it up. However, this meant that Erica could not do any Joshua care, as she was in severe pain.

Joshua meanwhile started off the week looking like he was in shunt failure. Keep in mind that he was schedule for neurosurgery on Friday to fix his titanium mesh in his head. So Tuesday was a little crazy, Erica was in pain with a bandaged right hand and Joshua acting out of character and off we go to the ER. A fun filled day spent in the ER with a full CAT SCAN and shunt X-ray series all say that Joshua’s shunts are working. From the ER we went to the pediatrician for clearance to the Friday surgery.

Dr. Harlow checked out Joshua and said he looked great and was cleared for Friday surgery. So home we go, a whole day with the ER and doctors, needless to say we where tired. Erica then went over the see our friendly hand surgeon to have her wound looked at. It seems she cut herself worse than we thought and the surgeon recommended going in and cleaning everything up.

So we set up a game plan Erica would have outpatient surgery on Wednesday to fix her hand. I would be on standby with my parents to take Joshua to the hospital if the shunt situation grew worse. Joshua stayed home from school on Wednesday with Nurse Pam so we could keep an eye on him. I must say that Erica surgery took longer than expected because she severed some tendons and also cut some bone. Erica is a cast up to her mid arm and cannot drive for at least a week and will be in some type of cast for 4-6 weeks. She will have full use of her hand and fingers and we are so thankful to have a very close friend who is a hand specialist.

Back to Joshua we where still nervous about his shunts and planned a visit to Dr. Fried on Thursday when Joshua woke up in the morning. However, Joshua surprised us all and woke up and said “I go”. We said “where”? His response “schoooool”. It seemed that whatever was causing the shunt problem resolved itself and his intracranial pressure normalized so Joshua went to school on Thursday. We prepped ourselves for Josh’s Friday surgery.

I must say it was a little stressful this week with Erica’s hand and waiting for one if not two potential neurosurgeries. Needless to say on Friday Joshua woke up just fine. We headed to the hospital for the snipping of the titanium. The amazing part was the surgery took maybe 20 minutes!! It took longer for them to get the IV in Joshua because of his spacticity. Anyway Dr. Fried said everything went well and we might even be able to go home later in the day. We where shocked!! He just opened our child’s head and said we could go home? Amazing!! We where prepared for 1-3 nights at the Hotel Hackensack.

Anyway, Joshua spent a few hours in recovery then was moved to the regular pediatric floor. He was smiling, talking, laughing, etc. He was saying hi to all his old friends in the hospital who have not seen him in at least 18 months, they all remarked at how tall he became! Joshua was laughing with Grandma Marilyn and Pop Bobby, he looked tired but good. So they discharged us last night and we were home by 6:30! Then the second shift Grandma Ellen and Pop-pop Paul came over with dinner. Joshua was just as excited to see them! He was laughing and smiling like always! Whew! Erica was tired though, it was a long day and very tough on her arm so she crashed early.

I am happy to say we are home and all are resting comfortably. The plan for the future is to get Erica healthy again and let Joshua rest but he is allowed to go back to school on Monday and celebrate the High Holy Days with family. Needless to say we are relieved and thankful to be home.

Thanks again for everyone for your thoughts and well wishes!

Steven

Wednesday, September 14, 2005 12:56 AM CDT

Hi all. We have been so incredibly busy with Joshua that we have neglected to share all the wonderful things that he is doing. I can’t believe that our last update was in December!

The New Year started off with fireworks! Joshua decided that walking was a fun way to get from one place to another rather than going for rides in his wheelchair. In January, Joshua began taking reciprocal steps with maximum support from Mom, Dad, or therapists. Not only does he like doing it, but he loves it and will seemingly run if anyone needs to blow their nose or make animals sounds while he’s trying. It is amazing! He will walk throughout the house: from his room to the front door to great Daddy or visitors, from the family room to his room, etc. The doctors couldn’t believe what we were telling them and are all in shock to see him walking. “We never thought he would do that,” is a very common quote from his providers. It’s amazing what a healthy child can do. The wheelchair will always be Josh’s primary mode of transportation, but walking has been great for getting Josh stronger. If he walks at least a little bit every day, we will be very happy.

Josh has been very healthy, aside from a couple regular colds and viruses. He is getting much taller and is looking very handsome. He knows it, too. Seizures and retching continue with the same or less frequency. We’ll call it a ‘stable’ situation. The screw that is loose in his head from the titanium mesh is still pretty much the same, so we continue to watch it. All else is good.

Joshua is still going to Hippotherapy and MEDEK once a week and continues to make progress with both.

Cognitively…again, it’s amazing what a healthy child can do. Joshua has learned a whole lot at school, at religious school, and at home. He loves making choices and understands most of what is going on around him. Our little boy has become a chatterbox with lots to say, not only in response to questions, but also self initiated.

Josh loves to interrupt a conversation, like any 6 year old does, by laughing and giggling. “Happy” is one of the best words to describe Josh. We are incredibly blessed to have such a great little boy.

We finally secured an adapted potty chair for Josh. It took nearly 5 months, but we did it. Josh knew exactly what to do on the potty! Second time on it, he made pee-pee. Third time…he made poops and pee-pee. Now he is mostly bowel trained. He is so proud of himself and can’t wait to tell everyone what he’s done. After he’s finished, he says, “I’m done.” We’ve been rewarding him with stickers, which works out really well. He has even yelled out “Stickers”!!

We are truly amazed at our little man. (Hmmm, did I already say that?)

Josh had a great Summer with a beach vacation and woke up each day insisting, “I go!”

Josh’s back at school almost full time now in a new classroom, with a new teacher, all new classmates, a new (yellow) school bus, and a new nurse starting next week. Our not so good news is that our long-time nurse, Jackie, has hurt her back and will likely not be back working with Josh anytime soon. We’ll definitely see her as much as we can as friends.

All is well with both me and Steven. We are very busy with work and juggling a little boy’s schedule. Life is great.

Update from our last posting: Our incredibly strong friend, Bruce Goldstein, is doing very well after getting a new heart. Still healing at home, he and his family have so many blessings and are resuming life.

Thanks for checking in with us.

Erica and Steven

Tuesday, December 21, 2004 10:05 PM CST

I know, I know….It’s been way way too long since our last update. Thanks everyone for the reminders. In this case, once again, no news is good news.

We are extremely thankful to say that Josh’s health has been very good. He has been so good that we’ve been able to decrease a number of Josh’s medications for seizures and for his spasticity. It has been so obvious that Josh has gotten healthier because he is so much more involved in life. He is learning at an unbelievable rate and talking more than ever. When he does say things, it is usually very appropriate. Joshua understands his world and is very appropriate in communicating just how much he does “get”. As far as Josh’s head is concerned, he still has the loose screw in his titanium mesh, but it has not changed. We continue to watch it and will follow up with Dr. Fried in February to talk about next steps and surgery to place something more permanent than the mesh in his head. More to follow…

Since our last update, Joshua has been swimming again, and we are working to accommodate a donated, Josh sized, pool in our garage for him to use year-round. The flotation device that we bought for Joshua has been unbelievable for him to experience his own body without anyone making his movements for him. Spending time in the water is very good for his muscle tone. We hope to have made big progress on the pool acquisition and accommodation very soon.

Joshua started school in September and has loved being in the new big-boy class. The class is for children with multiple disabilities aged 5 to 8. Most of the kids have a one to one aide or nurse, while a couple of the kids, along with Josh, have pretty big medical stuff. Josh loves the structure of the class and is more responsive than last year to his teacher and therapists. The speech therapists notice his fluctuating ability to activate his switch depending on his tone (spasticity). Mostly, though, Josh loves using his switch to “talk” to everyone and to use the computer. We are so excited to see Joshua developing and growing.

Growing is something that Josh is definitely doing. Thankfully, he hasn’t gained anymore weight, but he has gotten taller. When supported to standing, Josh looks like a very big boy. It’s amazing to see him grow when there was a time when we wondered if he would ever grow.

Josh is back to Hippotherapy (therapy on a horse) and doing phenomenally well. The therapist is amazed with Josh’s progress. He never could have done so well last year. Josh is sitting up taller and looking around at the other animals and farm. The half-hour session is just enough for Josh because, at the end of the session, he is “too pooped to pop”. His horse, actually a pony, is Joey, and this pony goes so slowly that he almost walks in reverse.

We finally got an accessible van. Life is so much easier now that we don’t have to wrestle Josh into a car seat that just doesn’t work for him. We now have a van that can lower, spit out a ramp and secure Josh in his most comfortable seating – his wheelchair. It is a thing of beauty and we couldn’t be happier to have it. But we keep asking ourselves why we waited so long?

Just over a month ago, we traveled with the Gendel clan on the Gendel Family 40 th Anniversary trip to Disney World. It was a great vacation for Josh, Grandma Ellen and Pop-pop Paul, little cousin Jared, and even baby Audrey. Oh yeah, we had a great time too along with Aunt Wendy and Uncle Jeffrey. This was Josh’s 6 th trip to see Mickey Mouse and he had a blast. Josh loves vacation and had so much fun sharing it with his extended family. We came home from vacation and Josh cried much of the night and communicated to us that he was very unhappy that he was not on vacation anymore. He told Steven (over about 45 minutes time), “I went to Disney World.” It was amazing!! Joshua always seems to return from vacations with newly acquired skills. This was a big one! We’re looking forward to the next vacation. We’ll see what happens after that one.

Steven is very busy lately working his growing business, and Erica is very busy with her growing business. The flexibility of our schedules has worked out really well with Josh’s fluctuating schedule. His nurse, Jackie, broke her leg with a bad fracture earlier in the Fall. Since then, Josh has had weeks and days when he could not go to school because there were no nurses to take him. Even now, we have days without nursing coverage and are juggling therapies and our own appointments. Somehow it’s all working out and Josh is handling it well. He is thrilled when he is at school and can’t wait to go back after days at home. We now have two more great nurses in Josh's life and know that while Jackie is mending, we plan to have her back in one piece in the Spring after her vacation.

Thanks to everyone for continuing to check in. Our love and prayers are sent to Josh’s friends who continue to have tough times.

Special wishes are sent to a very important person in his life and our family’s life. Please send your wishes to Bruce Goldstein as well as he is working hard to heal his heart. Please check out Bruce’s site at www.caringbridge.org/nj/brucegoldstein.

Happy Holidays and Happy New Year. Our best to you all for happiness and health in the year to come.

Erica and Steven

Wednesday, August 11, 2004 9:49 PM CDT

Hello all. It’s been a while, but everything is really good here. We moved to our new house in Livingston just over a month ago and are enjoying home ownership tremendously. Joshua loves his new “big boy room” and calls it his “ig oy oom”. It has been a quite a couple months with improvements to our home, packing and unpacking, and just getting used to the routine in a new place. We feel very settled at this point and are even comfortable with people visiting. It is wonderful to not be renting anymore, and we are comfortable handling the crises of our home as they arise. Our new neighbors have been very welcoming with flowers, cookies, and good conversation. We are already feeling connected in a nice community. The school district transition went extremely smoothly giving us renewed confidence in our move to Livingston being the right one for Joshua’s education.

Joshua is GREAT! He is very healthy, happy, and FIVE. Joshua understands more and more. He loves to let us know his opinion of most subjects and let’s us know when he is not happy with the family game plan. What’s not to love? Steven and I wouldn’t want it any other way. One specific recurring incident that we love to share is that of dinner every night when we all sit down to eat together. (FYI this is most nights.) As soon as we wheel him up to the table with food set on it, before we even sit ourselves down, Joshua starts smiling, belly laughing, and squealing in excitement to be together with his family. It even happens when his grandparents are visiting for a meal. This is truly the stuff of life!

Update on Joshua’s head: We met with Dr. Fried about the bump on Josh’s left temple. As it turns out, the tear in the titanium mesh is a mechanical tear to let the mesh lay flat against his head, and it was made by Dr. Fried when it was placed back in 2002. The bump is actually a loose screw that secures the mesh in place on the surrounding skull bone. Dr. Fried feels that it is not a problem unless the skin appears to be compromised in any way or if, G-d forbid, the screw should break through. If either occurs, Dr. Fried will have to snip off the screw through a small incision. In the meantime, the discussion to replace the titanium mesh has begun. Joshua will need to have a more permanent and safer replacement which will likely be a very highly advanced plastic material that is made at a medical lab somewhere. More specifics to come. The procedure is know as ‘reconstructive cranioplasty’ and is will likely be scheduled for about 12 months from now. Be assured, this is a necessary procedure to have Josh’s head be safe for the long term. It will not need to be revised. Steven and I are very confident about it and are comfortable with the time frame. The reason we are waiting 12 months is because of Josh’s flurry of shunt revisions and infections from September to February. Time heals.

Steven is very busy with real estate, and he loves his work and is doing quite well. I have been busy with Mary Kay and am amazed by the success I have had to this point. We are both having fun and appreciate the flexibility both jobs offer us.

We are very proud to announce the birth of Joshua’s new baby cousin Audrey Pearl Gendel who was born last week to his Aunt Wendy, Uncle Jeffrey, and little cousin Jared. Everyone is doing well and Audrey is a beautiful baby girl.

Joshua continues to give so much to everyone he meets. He is very loved and goes to bed every night with a smile on his face. Perspective is everything: Every day is a gift. You never know what tomorrow will bring. Things could ALWAYS be worse.

Thanks so much for continued love and support. Thanks Jeff, Andrea, and Pop-pop for the friendly reminders that updates are always welcome…NOW.

Our prayers are with Mallory and Christopher as they continue to battle seizures.

Erica

Tuesday, May 11, 2004 9:11 PM CDT

I can’t even believe that it has been two months since updating! We’ve all been so busy. Joshua is doing great! He’s back to school full-time with Jackie and a new nurse, Anne, splitting the week. Joshua’s getting a whole lot out of school and making incredible progress with therapies. He’s thrilled to go, go, go. Josh has lots to say and is telling us about his life all the time. He’s even starting to tell his stories to everyone at school. Joshua is very, very happy. We are just giddy with Josh’s progress.

As far as Josh’s health is concerned, he’s been doing very well. He recently had an ear infection and a GI virus which made for a most unpleasant time a couple weeks ago. The biggest news is that I noticed a new bump on Josh’s head at his left temple. As it turns out, an x-ray of his head shows a distinct tear in the titanium mesh in Josh’s head. Reminder: Josh has titanium mesh in place of skull over a large portion of the left front of his head due to an infection he had in 2002. The mesh was not meant to be permanent but is intended to maintain the integrity of the shape of Josh’s head and minimally protect his brain from injury. The neurosurgeon said that Josh can continue with all activities without restrictions and that there’s no concern unless the mesh should come through the skin. That would be a big emergency. Our take is that he’s going to school with a body guard every day and all the therapists at school know to use extra falls precautions. We’ve made a tentative appointment to see Dr. Fried in early June to see if something else should be done electively rather than getting to the point of an emergency.

Steven is very busy at work. Josh and I miss him because of the long hours, but this is the season for busy real estate. We are all really excited with Steven’s success in real estate. We’ve added to his success by purchasing our first home! Yep, we found a ranch that will make life oodles easier for everyone. We lose the stairs, gain a bedroom, gain a family room, gain a bathroom, gain a garage, and gain a dishwasher! We won’t close until mid-June and will have some minor work done immediately following. Move in will be the last week of June. I can’t wait to have a much easier house for Joshua.

Today is Joshua’s birthday. Five years ago today Josh came into the world as one of the smallest babies born. We never could have predicted that his life would take us on such a ride of incredible joys and heartaches. Our blessings are many without a day passing that we do not acknowledge them. Joshua is very happy and gives so much love. He is 100 percent genuine and has an incredible love of life. He works to reach his potential every day and is very proud of his accomplishments. Steven and I have gained so much from this short amount of time with Josh and cherish every moment of it. We are truly blessed.

We realize that we are overdue for new pictures and we will add some from our recent Disney trip soon. The challenge will be finding them since they might already be packed. Thanks again for all the thoughts, good wishes, and prayers.

Tuesday, March 9, 2004 9:24 PM CST

Sorry it’s been a while since updating. Joshua has been healing and doing very well. His new shunt is working quite well and his old shunt is partially functioning. Josh’s hair is even growing back quickly. So quickly that he’s already had a haircut. Since his last surgery, Josh’s spasticity has been fluctuating requiring us to decrease meds as needed. It’s really nice to skip meds rather than adding meds as needed.

Since Josh was on the mend and we were feeling spent, we took ourselves on a vacation to see our buddy Mickey Mouse. Josh had medical clearance from all but one doctor, so we took our latest CT scans, medical information, and directions to Arnold Palmer Children’s Hospital and went on a vacation to Mickey Mouse’s house. We made a nice connection with someone in Texas who helped us out to find a place to stay on the Disney property. Aside from difficult travel days, Joshua had a great time. We all had a great time and felt very relaxed. The weather was incredible, the people at Disney were wonderful and, best of all, Joshua got so much out of the trip. He smiled and smiled. He watched the fireworks, went on rides, and got lots of hugs and love from some of his favorite Disney characters and we can’t believe that the vacation had to end. Steven and I keep wondering how we can capture that Disney feeling of relaxation even when we are at home.

Joshua is still not back to school because of our lack of nursing. However, Jackie will be back in just three and a half weeks. We all can’t wait. Joshua loved visiting her in Florida and kept saying “Ackie! Ackie!” We all can’t wait until April 1.

Joshua went back to MEDEK today and did very well. Disney and having his head and lungs healed has made a huge difference in his therapy. We are going to try to get some extra MEDEK sessions in while he does not have nursing for school.

Joshua is looking forward to celebrating his little cousin, Jared’s first birthday with him this weekend. We can’t believe that he is a year old already.

Thanks for the continued support, prayers, and love. It keeps us going in good and not-so-good times.

Erica

Tuesday, February 10, 2004 8:11 PM CST

We made it home!! This was a relatively short stay at the hospital when comparing to our previous admissions. Thankfully, Joshua was doing well enough to go home today. He was discharged today with good wishes from everyone involved and the strict instructions to return only for visits. Sounds good enough for us all.

Joshua spent most of yesterday smiling and resting. He was out of bed a number of times, but he was pooped out. After a good night sleep, Josh woke up happy, still pooped out, but doing very well overall. The neurosurgeon visited this morning and told us that he only needed to see Josh if there is a concern or a problem. All of the doctors in his practice have been made aware of Josh’s needs and are available if we need them. I let him know that it’s nice to know that another neurosurgeon has familiarity with Josh’s head. Hopefully we won’t need him again.

We’ve determined that the “pooped out” Josh that we’re seeing is the residual of the IV Phenobarbital that Josh got while we held his gastrostomy medications. The good parts of this are that Josh is resting well to heal and mend and that it has halted the second day post-operative spasticity that we always see. The not so good part is that it has made him so pooped out that he is not coughing effectively to clear his copious secretions. Tradeoffs.

We are thrilled to be home together. But, we can’t help but feel that we must accomplish everything at home that needs to be done just in case we need to run back to the hospital. Fortunately, Steven stayed home this afternoon to help and just hang out with us. We actually all sat on the sofa together for about an hour this afternoon. I can’t remember the last time we did that.

That’s all for now. We appreciate the incredible support and love that have been sent our way. We’ll update in a couple days as things improve.

Continued prayers for Josh’s friends…

Erica

Sunday, February 8, 2004 6:18 PM CST

Well, five days at home were wonderful. Joshua woke up so happy everyday. His oxygen saturations were beautiful at 97% to 100%. Steven and I were giving each other high fives every night after giving Joshua his 11pm medications. Joshua even got into his stander and was getting back to some of his usual activities. He napped every afternoon and was recuperating from his three week ordeal in the hospital.

Until yesterday….Go ahead, close your mouths. Joshua is in the hospital again. He woke up yesterday miserable and the retching started almost immediately. We weren’t able to give him medications let alone food or pedialyte. And, Joshua’s head was swollen. After a not so fun time at music class, we shuffled off to the ER. Josh was loaded with some fluids. After another CT scan and shunt series x-ray, shunt tap, and lengthy discussion, Josh was admitted to the PICU with shunt malfunction. He retched over 30 times and had a head ache the size of California.

So here’s the catch to all of this: Dr. Mazzola is on maternity leave. Dr. Fried is unavailable due to illness. So who would fix Josh’s head? A further complication included Dr. Katz being unavailable. Fortunately for Josh, a lot of people know him. Dr. Thompson quickly and adeptly stepped in to help with diagnosing and treatment planning. He admitted Josh to the PICU and changed all his medications to IV. Since last night, many doctors have been consulted on Josh’s head. We weren’t sure if a doctor from another hospital was to join us for surgery or if an adult neurosurgeon would take care of Josh. Steven had a lengthy conversation with an adult neurosurgeon to get history of Josh’s life and his head.

We were feeling grateful to have had Shabbat dinner at home before coming back to our home away from home. Our hopes were dashed at having been home and doing so well to crashing and burning and running to the ER. While sitting in the ER, we both were very confident that Joshua would have surgery to fix his head, whether it was straight to the OR from there or not remained to be seen. The lack of clarity of what the exact problem was and who would fix it made us quite anxious.

As it turned out, Joshua had surgery this afternoon with Dr. Vingan, the adult neurosurgeon who spoke with Steven last night. He has experience with pediatric cases and even went so far as to talk with Dr. Fried prior to the surgery. That certainly eased our anxiety to some extent. Sitting in the waiting room during surgery was a bit more unsettling this time not having our familiar neurosurgeons playing in Josh’s head. At least this is a familiar hospital.

The issue with Josh’s head is that his ventricle collapsed around the shunt thereby stopping it up with “brain stuff” making it work only minimally. That ventricle is, however, not very large and probably doesn’t have too much pressure. The correction that was made was to insert another shunt catheter into another ventricle that was more enlarged and connecting it up with the existing drain. So, Joshua has two shunts connected to the same drain each with its own valve. Fortunately, Joshua did not have to have his shunt externalized and the connection was able to be made to the same internal drain to his abdomen. There is question as to whether Josh’s ventricles are “communicating” with each other by allowing for fluid to flow back and forth between them. At this point, there is minimal concern that there is any infection to worry about, but samples of CSF were sent to the lab for cultures anyway.

Joshua is feeling much better already. He’s still very sleepy from surgery and from being in shunt failure but he’s smiling and talking a little bit. After another couple days, we’ll all feel much better that Josh’s shunts are working appropriately and that he’s OK.

We are quite exhausted, emotionally and mentally used, and happy that Joshua is once again on the mend. But, we feel awful that Josh had to experience yet another neurosurgery. It also means multiple IV sticks, CT scans, and xrays.

Our sites are set on healing and being home once again. We’ll get there for sure. Let’s hope that this surgery is the only one for a long while.

Keep praying for Josh as he heals and as we watch the shunts. We could really use it now. We also ask for your thoughts and prayers for Josh’s friends Chavie and Isaac this week.

We’ll update soon.

Erica

Tuesday, February 3, 2004 9:28 PM CST

We’re home!! Joshua was so happy to leave the hospital yesterday and arrive home. He laughed, squealed, giggled, and smiled from the moment we left the hospital to the moment he went to bed last night. I think this was the happiest I have ever seen Josh, at least when leaving the hospital.

All tolled, Joshua was in the hospital for 20 days. He had two surgeries, about five CT scans, at least a half dozen x-rays, and countless sticks for blood work, IV replacements, and a PICC line. This hospital stay was grueling to see Joshua admitted when looking so “good” (or what we thought was good), only to get so sick that we were not sure if his body was shutting down. He is now doing very well. What a rollercoaster.

We continue to feel very fortunate that the Pulmonologist was so on top of Josh’s respiratory issues to demand that Josh’s medical team take note of his declining respiratory status and get the shunt out of his pleural cavity immediately. Had she not been so aggressive, Joshua would be very very sick today. He probably would have gotten acutely ill from the MRSA infection and from his lung collapsing from the pressure of the fluid around it. As it turned out, Josh never became acutely ill from the MRSA because it was caught so early. He has also been treated aggressively for it so that it will not go any further. Joshua will continue to be treated with oral/gastrostomy antibiotics for another month to be sure that the infection is fully treated.

Joshua will not go to school yet until he sees Dr. Fried next week for final clearance. Josh’s head has been bleeding a bit at the incision site, so we all want to be sure that it’s resolved. As long as there’s no CSF coming from the site everyone is okay with a little blood. Perspective is everything! We’ll also wait on aggressive therapies until all sutures have been removed from Josh’s chest. That will happen at Dr. Fried’s next week.

Joshua misses everyone at school and music class. He smiles every time we talk about his friends. Hopefully, Josh will join his friends at music this weekend. He’s also looking forward to seeing his friends from Friendship Circle.

We’re exhausted and digging ourselves out from piles of mail and laundry. Happiness in being home together certainly eases the burdens.

Once again, we find ourselves feeling blessed in having continued support from so many people. These few words of gratitude cannot express the extent of our feelings. The love, prayers, warm thoughts, help, mail, email, calls, web hits, etc. from family, friends, and strangers keep us going and astounds us in its enormity. Thank you, thank you.

Joshua sends love, wet kisses, laughter, and full body smiles. He gives so much…

Erica and Steven

Friday, January 30, 2004 5:51 PM CST

Hello everyone.

Joshua has been improving tremendously. He had a difficult second day post op, as usual, with uncontrolllable spasticity. He needed lots of extra medications to help control it and get him to sleep. Overall, Josh has improved breathing and is keeping his oxygen saturation levels much higher than it's been in months. We hope that we can eventually get rid of the blow-by oxygen that he's been using since September and rely only on stand-by oxygen. The new shunt is working very well with no swelling noticed on Josh's head. Further, the multiple wounds on his chest and head are healing well.

Joshua has not been in his wheelchair in quite sometime, so we look forward to some short amounts of time in it tomorrow. He also has not had any therapies since the very beginning of January, so we have lots of work ahead of us.

So why are we still staying at our home away from home? Joshua could have been dischaged today had his PICC line not broken. On Wednesday night, the line broke at the hub connection. It is not uncommon for the PICC to break there, but it was a huge blow for us. Josh needed to have an IV placed right away so that he could continue getting IV Vancomycin and Rifampin. Getting a new PICC was contemplated, but the team decided against it to avoid another invasive procedure, to avoid infection risk, and to save his veins for the future. He also will only need the Vancomycin until Tuesday at which time Joshua will go on oral/gastrostomy antibiotics. So we have been praying over his IV. Unforturnately, the IV blew this morning. The IV was replaced, but it is precarious. Joshua will need to be restuck if it comes out today or tomorrow. However, if the IV blows on Sunday, there is a chance we can go home then with oral/gastrostomy antibiotics. So, the longest we will be here is until Wednesday and the earliest we can leave is Sunday or Monday. We do want Joshua to have the full course of the ideal antibiotics because he is at such high risk of bad infections with all the hardware in his body, but we are longing to be home together.

We also left the comforts of the PICU today. Unfortunately, the PICU became very busy with sicker kids than Joshua, so we were sent up to general pediatrics where we are enjoying familiar surroundings and seeing nurses we haven't seen in quite some time. There's also an eerie quality to the floor because the last times we were there were with EEGs, grids/strips, infections, etc. We already miss the unbelievable PICU staff who spoiled us all rotten and gave Joshua the best care we could ever dream of.

There is not much more to say at this point. Thanks for the ongoing love, support, and prayers. We still need them as we get through the home stretch of this hospital stay. Joshua is talking a lot these days and keeps saying "I love you". We want to be sure that the love is spread around to all that care for him.

Erica

Tuesday, January 27, 2004 4:10 PM CST

Joshua did very well in surgery today. He went to the OR earlier than planned because there was available time and he was already prepared. Dr. Fried said that the surgery went as well as he wanted it to go. The whole shunt was revised with the drain to the peritoneum. When taking out the old shunt portion that was in Josh’s head, Dr. Fried noted that it was about 80ccluded with “brain stuff”. So, in the best of circumstances with his shunt draining anywhere, Joshua still would have had a malfunction. In fact, it probably was not working completely for a while. Dr. Fried validated that a swollen head is definitely a window to his shunt’s malfunctioning. It is indeed the first symptom we see with shunt problems followed by retching and lethargy. For now, we keep our fingers, toes, arms, legs, and everything else crossed that the shunt will drain properly to the peritoneum and that there will be no more shunt malfunctions.

We are going to hang out here in the PICU for another couple days post-operatively. We hope to do the rest of the recovery process and infection treatment at home. We may need to stay a bit longer if Josh’s PICC line doesn’t hold up. (More fingers crossed.) He will need to be treated for about another five weeks with antibiotics – mainly oral/gastrostomy antibiotics. Joshua is a tough kid who will surely get through this one. It would have been a very different story, though, had the surgery two weeks ago been delayed or done differently. Joshua would be a very very sick child from the MRSA. We are lucky to have had this infection caught so early.

Josh is amazing. He’s been happy, laughing, and smiling since an hour after his return from the OR. He listened to his “vacation music” and visited with his grandparents. What a great kid!

Joshua’s had a haircut. Another Barber Fried special. No tip. He looks as if he’s lost a couple pounds with the shaved head. It is amazing to see all the scarring on his head now that his hair is gone. Josh’s hair is so thick that it covers a large road map. We look forward to his hair growing in again…in about two weeks.

Joshua misses his friends from school, music class, and Friendship Circle a whole lot. We can’t wait to get back home and into our routine again. Thanks again for all the support and prayers. It helps us all keep going.

Looking forward to being home.

Erica

Sunday, January 25, 2004 9:35 PM CST

Here’s the latest update: Joshua is doing better and better. Friday, was a great morning and most of the afternoon. Dr. Fried ordered that his shunt be clamped for 24 hours to get another CT scan and monitor intercranial pressure. Josh was clamped at noon and began showing signs of increased pressure just eight hours later. It was unbelievable to watch the pressure jump unbelievably high on the monitors. He had to be unclamped for a minute or less about three or four times in the 24 hour period to simply provide him relief and a decrease of pressure. By Saturday morning, Joshua was a very very unhappy boy with lots of retching, low energy, and a swollen head. We were all happy to complete the CT scan and open him up to drain. Infectious Diseases MD stopped in on Friday as well. The group of doctors are working to determine the antibiotic course following surgery. We have been told that Joshua can be on oral antibiotics via gastrostomy tube after surgery or if the PICC line needs to come out.

Joshua’s chest has been very clear since the chest tube was removed last week. He continues to wear the dressing covering the site, but I expect it will be removed tomorrow. Josh had slight drainage from the site for a day following its removal. So far, so good this weekend. It has been a pleasure handling Joshua without the added plumbing. He loves to be held.

Today was an amazing day. Joshua was almost his usual Joshua self. He smiled, talked, laughed, laughed, and laughed some more. He seems so healthy right now. We just have to let the antibiotics keep working so that we can all continue with the plan for replacing the shunt. Yep, the whole shunt will be replaced from top to bottom. The plan is that it will definitely drain to his peritoneum (abdominal cavity). We are all hopeful that it will work as Josh is fairly healthy and hasn’t had anyone playing inside that area since October. The general surgeon is not very supportive of this move, but the whole team recognizes the limitations of Joshua’s body and its ability to handle the shunt in other places given the quantity of CSF that he drains and the recurring infections. The next possibility, if the peritoneum fails, is his gall bladder. Hopefully, we will not have to consider it further. Surgery is scheduled for Tuesday in the late afternoon.

Thanks for the continued support. We really appreciate hearing from you all. This hospital stay has been a juggling match, and I feel like we have to keep bending down to pick up dropped balls while there are still some in midair. Some days are harder than others. Please, understand that we are just too pooped to pop and do not mean to be short with anyone or neglect to return phone calls. Our PICU friends and family help us to keep on keeping on and have been supportive in our life in and out of the hospital. It’s even supportive to see familiar families in the PICU even though we are saddened to see them admitted. Going through constant medical ups and downs is a bond builder for families like ours and Josh’s friend Sara who was admitted for a short time. You can get to Sara’s website through the links on Josh’s webpage.

One final note: Caringbridge has been a phenomenal resource for our family, extended and otherwise, and our friends, old and new. Please, recognize what a wonderful organization it is and consider supporting them if you are planning to support a worthwhile cause. We have been using their service since September 2001 and have found it to be invaluable on so many levels. Caringbridge has also helped a great many families who have come to know it through Joshua.

Joshua sends warm smiles, wet kisses, and many “I love you”s. Thanks for the prayers. They keep us going.

Sorry I’ve been rambling. Let me go pour myself into bed. We’ll update more in the next couple days.

Erica

Thursday, January 22, 2004 9:31 PM CST

Hi everyone. Joshua is starting to mend. The past few days he is starting to act much more like himself. We are seeing the smiling, happy, talkative Joshua. Joshua is also really spastic and spasticity control is an ongoing challenge.

Today was a good day as Dr. Valda removed the chest tube with one quick yank. After that Joshua was very happy because Daddy could pick him up. Needless to say it was a great moment holding him again and Joshua was very excited. When Erica arrived this morning she saw us out of bed and started to cry, happy tears. It was good to have him back. Joshua has been very spastic today and it is making it very difficult to hold him. Toward the end of the day Joshua and Erica spent some time snuggling out of bed. You should have seen the smile on his face. I am not sure who was happier. Joshua was glowing but so was Erica.

At the end of the day Dr. Fried stopped in and said that surgery is scheduled for next Tuesday afternoon to put in a new shunt. It has been decided that it will drain into the peritoneum. Now all we have to do is wait, treat the infection, and work on getting Joshua eating again.

On a side note, Erica saw Jackie yesterday at the wake for Jackie’s father. It was good that she went with her parents for the long drive to Hamden, CT. Jackie was very touched to see her and it reminded us how much we miss her. Back at the Hotel, Grandma Ellen stayed to help me with Joshua and he had lots of fun reading books with her. He amazes with his comprehension when it comes to reading.

Well, that is it for now as I am tired and getting ready to hit the sack. Exhaustion and fear are certainly some prominent feelings this stay at Hackensack. Thank you all for your prayers, messages, thoughts, and words of encouragement, they certainly help us get through the stays.

Steven

Tuesday, January 20, 2004 2:53 PM CST

The last few days have been far less than stellar than we had hoped for.

The bad news began on Sunday when we were told about one of Josh’s cultures which came back positive for MRSA. Yep, that would be Staph Aureus, a bad staph infection that Joshua had back in the summer of 2002. Another culture, also taken in the OR, also confirmed the infection. Sooooo, we are going to set up camp here at the hospital for a bit longer than expected as the infection is treated and we wait for surgery. Surgery that had been scheduled for today is postponed until sometime next week. Joshua is on isolation requiring people who visit to wear gowns and gloves to enter the room. (The yellow gowns could be a fashion statement, but they usually make everyone look lousy.)

The concern that we all are contemplating is the infection’s origin. Could it have been hanging out somewhere in Josh since the last time he had it? Is it new? Did it begin somewhere in his head even though the CSF cultures continue to come back negative? All of the options will be considered by a great many care providers, and they will then determine further treatment options. For now, Joshua is getting a cocktail of two antibiotics that should knock the bug out of him.

The options of where to place the shunt this next time have decreased by one. The heart is pretty much not an option due to the recurrent infection. The peritoneum and the gall bladder are the remaining options. We’ll see….

Joshua’s chest tube is no longer draining significant amounts, was clamped late last night, and will hopefully be pulled out today sometime. I am anxious to hold Joshua again; I’ve been too scared to pick Josh up with the chest tube in place because I don’t want to hurt him or risk yanking it out myself.

Yesterday was one of the top five worst days of Josh’s life, and this one was not even right after a surgery. He had a horrendous day of retching every five minutes needing Ativan to stop it. Eventually he became severely dehydrated. Joshua became a human pin cushion but unfortunately a vein could not be found for an IV site. Joshua was also unresponsive to most stimuli. He didn’t cry when he was stuck and did not respond to us. Dr. Percy decided last night to attempt a PICC line. Without sedation and without a response from Joshua but for a small cry, Dr. Percy was successful. Hurray!! I did my happy dance and the fluids were flowing to bring Joshua back. He was so sick and we were so scared. Joshua finally started to urinate during the night and he had a very light sleep.

Joshua was a very different boy this morning. He greeted Steven with a smile. He greeted me with a smile and a raised arm for a hug. Phew. What relief. Joshua is still not back to feeling great but he is so much better than yesterday that we are mostly relieved. Retching is still not normal with more frequent episodes than we would like, but it is not nearly what it was yesterday. We’re still not feeding him at this point and are simply trying to keep his medications in him.

Updates:

Great Grandma Rae is improving every day and is getting much stronger while she is grieving. The whole family is thankful and relieved that she is improving.

We are sending special wishes to Joshua’s great-Aunt Barbara who will be having surgery tomorrow. We also want to send extra love and prayers to Joshua’s nurse Jackie and her family for the loss of Jackie’s father.

That’s all for now. We’ll update more in the next few days. Thanks for the continued support and prayers. Joshua really needs it now. We really need it now.

Erica

Saturday, January 17, 2004 5:57 PM CST

Hi all. It’s been quite a few days. Joshua had an impressively good day on Thursday right after having surgery. Friday was not so good. Joshua was very spastic and uncomfortable. His body spasmed uncontrollably making it impossible to do anything but lay flat on his back in bed. Even on his stomach for naps, he continued to spasm and could only sleep for a few moments before being awakened by a spasm. Sweating was also an issue because there was no way to keep him cool while laying on a plastic mattress and polyester sheets. Friday night was not such a good night for sleeping because he continued to spasm even with lots of extra drugs for spasticity and narcotics for pain. He finally fell asleep soundly at 6am this morning and slept until 1pm. The spasticity is definitely improved, but he is really sleepy from yesterday.

Joshua’s chest tube continues to drain. It’s a bit more than even the surgeon expected, so the chest tube will need to stay in longer than expected. It must come out, though, prior to neurosurgery. Neurosurgery is planned for Tuesday, but we are not exactly sure what exactly will be done. Meetings of the minds will continue with Joshua’s health care team.

So, this is looking like a bit more than a week stay. Steven and I jumped right back into the hospital routine. This time we are trying hard to spend some time with each other. Last hospital stay was a bit difficult as we were ships passing in the night. This hospital thing does get tiring, though. Joshua has been a trooper and continues to help us get through. He loves everyone in the PICU and has been very responsive to the nurses and doctors. Joshua knows that the people at the hospital are good people and care a lot for him. Phew!

We know that lots of people care about Joshua and about us. We appreciate all the help and support from so many people. The goodness of people is amazing. Thanks for the calls, emails, mail, web hits, meals, and many many offers of help. We are slowly getting better at accepting the help.

Joshua sends lots of wet kisses and head to toe smiles.

Erica

Thursday, January 15, 2004 5:29 PM CST

Greetings from our favorite home away from home. That’s right…Joshua is back in the hospital. Let me start two weeks ago: Joshua had a CT scan and shunt series x-ray and it showed that his shunt is working fine in his head. But, the x-rays showed increased pleural effusion. “Pleural effusion” is fluid in the pleura, area around the lungs. We expect Josh to have some pleural effusion because the shunt has been draining to the pleura since September. We’ve been concerned that his body would not be able to reabsorb the fluid since the shunt was placed there due to Josh’s present lung disease and amount of shunt drainage for a small body. After the results of the tests two weeks ago, the pulmonologist checked Joshua out and began more aggressive respiratory treatments. She also gave us scripts for x-rays and blood work to happen two and four weeks following.

Here we are two weeks later…at the hospital. Joshua had x-ray and blood work on Monday. Steven and his mother took him for the tests, but the radiologist would not let Steven leave until he spoke to the pulmonologist. At that moment, Steven said to Grandma Ellen, “ Josh is going to be admitted.” I spoke to Donna, the pulmonologist that evening for a long time. Joshua’s pleural effusion DOUBLED in two weeks! It also put so much pressure in his lungs that he was at risk of lung collapse, respiratory distress or arrest, and getting very sick. The x-ray also showed that the pressure was pushing things over in his chest cavity and it slightly rotated his heart.

The rest of the team, and most especially Dr. Fried, agreed that the shunt must be removed from his pleura right away. Joshua was admitted to the PICU yesterday and had urgent surgery this morning to externalize his shunt to be sure there is no infection present and to let his body rest before replacing it somewhere else. Joshua also had a chest tube placed to drain the fluid build up in his pleura.

Surgery went very well. Josh’s chest tube has been draining lots of fluid. His head is draining nicely and the CSF looks nice and clear. Joshua had some initial pain but is now happy, talking, smiling, and laughing. We fully expected Joshua to be in much more pain with the chest tube and are pleasantly surprised to see him so comfortable. The chest tube will likely be removed on Saturday. The shunt will likely be revised on Monday or Tuesday.

Although it’s crazy that Joshua is back, we have a strangely comforting feeling. Steven said that it’s like going to a favorite resort again where everyone asks how you’ve been and comments that you look good, etc. Hugs and kisses are always plentiful. Thankfully, everyone knows Joshua and his needs and does their best to make him comfortable. We will do our best to get out of here quickly, though, to avoid getting sick. It’s a goal.

News from last week is also that my grandfather died after getting sick with the flu and pneumonia. Both he and my grandmother (both of my dad’s parents) were in the hospital with the flu and pneumonia, but Pop-pop Bill did not have the strength to fight this one off. Grandma Rae was discharged for the funeral but was very sick and weak. She has since gotten much stronger and is making the recovery the family has been hoping for. The grieving has been hard for grandma and for the whole family. And, we all truly appreciate all of the good wishes that have been sent our way.

Thanks for the continued support, prayers, calls, emails, and thoughts for Joshua and for our family. We’ll be sure to update frequently during our stay at our home away from home.

Joshua is a very happy child who knows that he is very loved. What a blessing!

Erica

Saturday, December 27, 2003 9:32 PM CST

Happy Holidays and Happy New Year. It’s been quite a while since updating. We’ve had a few shunt malfunction concerns and visited the ER just before Thanksgiving for a “CT scan Deficiency” as Dr. Katz put it. Josh doesn’t make anything straight forward, so we are still concerned that his shunt is functioning only intermittently. The next CT scan, which could be as early as this week, will be CT scan #27 at Hackensack. Joshua has been healthy otherwise. Seizures and seizure-type activity continue as before. Retching continues as before. Joshua is still using oxygen at night and requires respiratory treatments a couple times a day.

Fortunately, Joshua has healed well from his last surgery and has even gained more weight. At a whopping 45 pounds, he is officially on a diet. Our goal is a healthy 3 pounds in 3 months. The weight is very visible and makes Joshua look fat. I just can’t believe that any Hilowitz/Gendel child could ever be fat. We’re going to try to correct that a bit and let him grow into his 42 pounds.

ITB surgery is still on the horizon. Getting rid of almost 20 doses of medications, protecting Josh’s liver, and keeping Joshua comfortable with his tone are goals. At this point, surgery will likely be early March. Plans are in the works to arrange a date.

Joshua’s wheelchair finally arrived!! He was fitted for it just before Thanksgiving and loves it. It is completely customized for him and has a lap-bar to break-up his extreme tone and helps to keep Josh positioned. He is doing more fine motor tasks more efficiently with this proper seating. Further, Josh’s head is positioned and supported very well. While at the very long wheelchair clinic appointment, his adapted stroller was checked for further adaptability. What they found was astounding. Joshua’s extreme spastic tone actually broke the seat in about five places. It is completely unsafe for him to use to go back and forth to school. We’ve got it in the basement for an extreme wheelchair emergency.

A very big task that we’ve had is trying to find nursing for Josh. Jackie is now on vacation for three months in Florida. We are continuing to grieve that Jackie left, but hunting feverishly for a nurse. We’ve interviewed a number of nurses and thought we had a good one, BUT she turned out to be a nightmare. The hunt continues….

In the meantime, Steven is still working hard and loves his job. I’ve been working a lot too and even started my own business in November. I am a consultant with Mary Kay. Yep, I liked the products enough to sell them too. Check me out at www.marykay.com/ericagendel.

Needless to say, we’ve been very busy. Josh keeps getting stronger every day and is saying more and more. He keeps amazing us and just keeps being delicious! We are blessed with a wonderful child who can be a real stinker and love. What more could we need?

Thank you for continued prayers, support, love, help, and good wishes. Holiday cards did not make it out this year, but we are grateful for many kindnesses from many people. It keeps us going. We wish everyone a new year of great health and happiness.

Erica

Sunday, November 16, 2003 4:21 PM CST

Hi all. ItÂ’s been a while since writing because Joshua has been home from the hospital and is getting back into a routine. Joshua has been healing well from the last surgery. WeÂ’ve noticed a marked improvement in some of his GI issues since fixing his belly. Specifically, his motility has improved allowing Joshua to get rid of one medication. Definitely steps in the right direction. Retching continues but it is not as bad as it had been prior to surgery. Shunt is working well (knock wood!!) with no acute neuro issues at this point.

JoshuaÂ’s next surgery to place his Intrathecal Baclofen Pump had been scheduled for December 16th and is now postponed until late Winter or early Spring at our request. Dr. Steven and I want to see Joshua healthier and stronger. Mazzola is very agreeable. Physical strength and head control have suffered greatly from the events of the last couple months. Joshua has returned to school and has begun therapies again. He has final clearance to continue with aggressive therapy this week, so we will be discussing starting back to Hippotherapy and MEDEK.

Joshua went back to school this past week. He loves school! He is doing great work and participating in therapy willingly. It is such a relief to have him getting back into school. Jackie is thrilled to back to school too. WeÂ’ve heard that Jackie and Joshua bring a whole lot to the class.

We are so excited because this Friday, we go to pick up JoshuaÂ’s big-boy wheelchair. It couldnÂ’t come soon enough; Joshua has broken his current chair with his spasticity.

All else is going along fairly well. Steven and I are feeling overwhelmed with making continued Â“grown upÂ” decisions but seem to make our way through each day. Events like this get us through: We were in the car yesterday going to a birthday party. Joshua was listening to Raffi and yelled out a word at the exact right moment it was in the song. He was singing along. Steven and I nearly drove off the road with excitement and tears in our eyes. ItÂ’s the good stuff that life is made of.

As always: Â“every day is a giftÂ”; Â“you never know what tomorrow will bringÂ”; and, Joshua knows that he is very loved.

Thanks for the continued support, love, thoughts, prayers, dinners, and everything else that I may be forgetting. It is unfathomable how we would be able to survive without it. Please, keep praying for JoshuaÂ’s friends.

Erica

Friday, October 31, 2003 8:32 PM CST

It’s time that I realize that whenever a doctor says that Joshua will be hospitalized, say for 3 to 5 days, it really means longer, in this case 8 days. Joshua ALWAYS has his own agenda. I was hopeful that this hospitalization would be a maximum of 5 days, and I did get disappointed that this stay was longer.

Joshua is home with us tonight and finally ditched the hospital gig by promising to have his lungs behave. Yep, I said lungs. Let me back up. Josh’s stomach started working on Monday and has been improving steadily daily with increased feeds and no retching, that is until the moment we got home today. The surgeon and gastroenterologist were both very happy to see Josh’s progress. Joshua will visit them both in the coming two weeks.

The problems with the lungs and breathing arose on Tuesday, or maybe it was Wednesday. (The mind is a terrible thing to waste.) Breathing had become labored requiring suctioning and nebulizer treatments. Finally, a chest x-ray was ordered and showed that Joshua has increased fluid in the area of his lower right lung. Keep in mind that he always has fluid in his lower right lung since getting the shunt drain to the pleural space around his lungs. The latest x-ray, though, showed an increase of fluid over the x-ray done on the date of admission. Crisis? No. But it did require a visit by the Pulmonologist and an increase of nebulizer treatments to continue for the next couple weeks. She did say, though, get out of the hospital as soon as possible because bad winter infections are already showing up in the hospital. That would be the last thing Joshua needs at this point. We appreciate the intensivists taking such good care of Joshua and being sure he was discharged at a time of day when his usual doctors would be available if there were any problems once getting home.

Phenobarbital was also discontinued because it was causing Joshua to be too “stoned” to be able to effectively clear his secretions. Actually, the phenobarb caused Joshua to sleep a whole lot and when he was awake, he could not open his eyes. It was two days worth of not opening the eyes. (The phenobarb had been ordered when Joshua could not have any of his usual meds because his stomach was off limits. It was continued so that Joshua could be free of unnecessary spasticity and seizures therefore allowing maximum healing of his belly.) Nobody liked to see Joshua this way. He was also agitated by feeling so medicated. It will take Josh a while to get the med out of his system because of its long half-life, but we are seeing vast improvement today.

We arrived home this afternoon with a smiling and talking boy who was very happy to leave the hospital but who is also making it clear that he misses his friends from the hospital. We look forward to visiting with those friends outside the hospital. Jackie was especially helpful to help get Joshua back into the groove of home. Joshua was, of course, thrilled to see her.

We are grateful this Shabbat to be home as a family. Steven and I are hopeful that his lungs will improve daily as Joshua gets stronger. This has been another set back. We look forward to seeing Joshua more like his usual self very soon. The last couple months have had its share of steps backward, but we know that Joshua will once again be forging ahead.

We thank everyone for continued prayers, calls, emails, letters, and visits to this website that give us strength to persevere. A special thanks to Randee and Debbie Rubenstein for a wonderful home cooked Shabbat dinner delivered to us today. It made coming home much less hectic.

More updates to come as healing continues.

Erica

FYI The car is running well with a new transmission. Thanks for the prayers.

Monday, October 27, 2003 9:35 PM CST

Welcome friends to tonight’s update. First let’s start out with a huge thank you for all of your prayers, support, kind words, and just checking in on the site. It makes a huge difference for all of us.

Anyway now for the news. Joshua spent Sunday feeling a little bit better. The doctors removed the NG tube and that seemed to really help him. The doctors want to let Joshua’s stomach drain for at least 48 hours before trying any of his oral meds or food. So this means we stay on Phenobarb and Valium. Joshua also had a lot of visitors on Sunday, Grandma Marilyn and Pop Bobby, Uncle Jeffrey, Grandma Ellen and Pop-pop Paul, and Miss Jackie all came to see him. It was a long day but Joshua was happy to have all the attention and went to sleep fast.

This morning he woke up with a big smile and started off the morning very happy. He was happy for a few hours this morning and seemed like himself. Then as the day wore on he was crankier and tired. Spasticity control is also an issue. Joshua blew the IV in his leg so he had to be re-stuck. Sure shot Myra was able to bet a new IV in his other foot this afternoon. Also, Dr. Valda slowed the drainage from Joshua’s stomach. He had the drain turned on every 4 hours to see how he would react. Well the good news is that his stomach had good bowel sounds and the color of the drainage became clear. So now the plan is to start him feeding tomorrow and give him some oral meds through the G-tube tonight.

Our goal is to increase feedings so we can keep Joshua hydrated, get him back on his med schedule and take him home. We are hoping that it might be as early as Wednesday but we are not 100 percent sure of this. In between all of this Erica squeezed in 3 hours of work and I managed to get in 3.5 hours.

Anyway, needless to say this has been another tiring and exhausting stay at the hospital and we are just trying to take it day-by-day. Thanks again for your wishes more info to come soon.

Steven

Saturday, October 25, 2003 3:15 PM CDT

Hi all. Joshua is resting fairly comfortably in the PICU. Actually, he’s not so comfortable. Let me start at the beginning….

Joshua had surgery yesterday to revise his Nissen fundoplication and do a pyloroplasty. He went into the OR for what was to be a 1.5 to 2 hour surgery. Over four hours later, the surgeon came out and announced, “Joshua has made me earn my pay today.” Joshua’s surgery was complicated by a whole lot of adhesions (scar tissue). The adhesions were from Joshua’s previous surgeries. It took some time for Dr. Valda to fish through the adhesions and create his road map of what needed to be done to correct Josh’s reflux. Dr. Valda said that Joshua’s previous Nissen fundoplication was completely undone. There was nothing left to it. Fortunately, Josh’s stomach was in proper position for the revision. His colon needed to be pushed down as it had migrated upward. And, Dr. Valda said that the adhesions necessitated creativity in completing the pylorplasty to improve Josh’s motility (digesting of food and moving it along into his small bowel). The length of the surgery is understandable considering the degree of adhesions.

Imagine, if you will, being a parent and waiting for your child an extra couple hours than expected while your child is in a very invasive surgery. Yes, we were out of our minds! We had confidence in the surgeon and the anesthesiologist and believed that if something were wrong, they’d come out and tell us. But still, it was grueling. Grandma Marilyn and Pop Bobby were waiting with us and feeling similar anxiety.

Joshua finally made it to the PICU after 6pm and was definitely not feeling good. Grandma and Pop left shortly thereafter to avoid seeing Josh so uncomfortable. Then, Grandma Ellen and Pop-pop Paul arrived around 7pm to spend some post-op time with Josh. He began to settle down after 9pm and his grandparents left. I left around 10pm and Joshua was starting to fall asleep after some blood work. Steven and his very caring nurse made sure that Joshua was very comfortable and he managed to sleep through most of the night.

When Joshua woke up this am, he was pretty darn ticked off having lots of extra tubes in him. Josh has his Gtube draining to suction. He has a nasal gastric tube also draining to suction. Overnight, Josh needed a foley to be placed to help him void and to monitor his urine output. Along with the IV, Joshua is feeling rather unhappy. He is trying very hard to remove the NGT himself and needs to have his hands held almost constantly to avoid it. Vacation music is helping to make him happy. Grandparents are helping to make him happy. And, we are realizing that he will be miserable for a bit longer. His favorite, seersucker-wearing, neurologist arrived today and said that it’s understandable that he’s miserable because he was just “filleted”.

Another issue Joshua is having is going without all of his GTmeds. Keep in mind that he takes over 10 meds over 30 times a day. Withdrawl is an issue. Spasticity is an issue. And, seizures are an issue. We have some, less than ideal, medications that are given through IV. We just need to realize it will just be a couple days before he can have the meds to stabilize him more.

Other than Joshua, our car decided it doesn’t want to keep going any more. Fortunately, I was not driving when this happened. Pop was a great help in taking care of the car and getting it to the mechanic for diagnosis and possible treatment.

In spite of everything, we are working to keep laughing and look to better hours and days ahead. Nancy Caplan was great in making sure that we had Shabbat dinner. It was yummy and greatly appreciated. Everyone’s prayers continue to sustain us. Thank you. Keep it coming and add our car to your prayers.

Erica

Wednesday, October 22, 2003 9:06 PM CDT

Hi all. We’ve had Joshua home and healing since leaving the hospital. The goals of rest, healing and preparation for the next surgery have been largely achieved. Joshua has not regained all of the strength he lost during the last hospital which we surmise is mainly due to his lungs accommodating the additional fluid draining to the area surrounding them. He still needs oxygen overnight on most nights and has even needed it during the day time on occasion. The pulse oximeter is never to far away. Retching has not improved bringing us to the next surgery….

Surgery is scheduled for Friday at noon. Joshua will have a revision of his Nissen Fundoplication and he will have a pyloroplasti (sp?). The Nissen is surgery to correct his reflux again. His first Nissen was just after he turned one. The pyloroplasti is a procedure to allow for improved motility (emptying) of his stomach. These procedures are quite invasive. Four or five days are the expected length of hospital stay this time. We are hopeful the hospital stay will be just that long.

During our time at home, Joshua’s PICC line malfunctioned and it had to be pulled out. Once it was out we saw that it was kinked just a few centimeters from the tip. So now Joshua has no IV access and he will need to be stuck multiple times. He had pre-admission testing today and needed to be stuck four times. I hope it is not a sign of what’s to come.

Joshua has seen a couple doctors and we’ve been in touch with many more. Lots of monitoring and keeping healthy have been our daily tasks. Jackie has been invaluable not only on that front but also in keeping him doing a lot of fun things at home. A pumpkin provided a number of days of fun. It had yummy seeds too for Mommy, Pop, and Jackie.

Baby cousin Jared had surgery last week. He is doing well. Aunt Wendy and Uncle Jeffrey are doing better, too.

Steven has been working a lot. He’s also helping out with much of my President and CEO of Joshua Gendel, Inc. job by helping to get Joshua to appointments and manage surgery prep. I’ve been working a whole lot to catch up on weeks and weeks of work and prepare for a couple days or more of absence again.

We’ll update more after surgery.

Erica

Sunday, October 12, 2003 3:42 PM CDT

We’re home as a family!! We arrived home on Friday night; a few hours after we had planned on getting out of the hospital. We prepared to leave on Friday around lunchtime but were delayed by Joshua’s heart rate being elevated. After some tests to rule out any unexpected issues, we made an educated decision along with the intensivist and Dr. Fried to go home. We live close enough to the hospital and are aware of Joshua’s needs enough to call and/or go to the hospital if needed. We also knew that Jackie would be visiting and will help monitor him. Visitors from equipment companies and the infusion company have been here since getting home. Reorganizing Joshua’s room, unpacking from three weeks in intensive care, and catching up on much needed rest have been priorities.

Joshua was so happy to come home. He smiled and chatted the whole car ride home and began squealing when we turned the corner of our street. Extra attention is normally what he wants when returning home from hospital stays and this time is no different. As expected, Joshua misses the constant stream of visitors to his room. Saturday morning, he woke up early for a diaper change and began sobbing. Steven did all he could to find out what was wrong. After asking if he wanted Mommy or grandparents, he asked if he wanted nurses from the hospital. Joshua began smiling and squealed with each nurse’s name mentioned. He misses the nurses! The nurses have given him wonderful care and handled him throughout the night even when he was awake without getting Mommy and Daddy to put him back to sleep. Joshua loved the attention. We have reassured him that he will see all his friends from the hospital in two weeks. This makes him smile.

Joshua will not be going back to school this week, but we are already planning lots of fun with Jackie. Steven and I will be getting back to work, but we will also be preparing for the next hospital stay. Lots of doctors to visit, appointments to make and change, etc.

Once again we find ourselves being thankful for the love and support of others. We arrived home on Friday and had a perfect Shabbat dinner here from Marianne Shulman within the hour. Calls have been constant, emails too. We know firsthand that there is power in prayer and that so many people whom we never ever imagined could give so much of themselves and could impact and support our challenging life in such tremendous ways. Our gratitude is overflowing yet never seems to come across in print with our full emotion. Thank you, thank you. Joshua especially thanks you all!

We’ll update more in the week. Please, continue to keep Josh’s friends in your prayers as well.

FYI My grandfather is home and healing well. Thanks for all who have asked.

Erica

Thursday, October 9, 2003 10:02 PM CDT

Hi all. Sorry it’s been so long for the updates. Joshua is doing much better. He is very happy, manipulative, playful, and ready to come home.

This week has been one of further healing as Josh’s pleura is handling the fluid draining from his shunt. Joshua’s O2 saturations have come up during the daytime, but he continues to need O2 overnight. He has also begun to need deep suctioning. Steven and I learned how to do this type of suctioning tonight. I felt awful doing it to Joshua, but it helped. He was really ticked off that I bothered him so much. Retching continues with as much intensity as ever, so the suctioning should also help guard against aspiration to some degree.

Joshua has also had “seizure type” episodes daily for a couple hours around mid-day. Tuesday was his worst day with this, but he continues to exhibit the same behavior daily. He has eye movements that are not in his control. His eyes will cross, move to the left and take his head with them, move upward, move back and forth from side to side, and drop down often associated with his whole head just dropping. He is often “out of it” and unresponsive during these episodes as well. Dr. Katz witnessed it and is suspicious that it is seizure activity and brought in Dr. Lambrakis, epileptologist, who agree that it is suspicious behavior. EEG was hooked up with an hour of their visit, but had to be removed just a few hours later for concern from the neurosurgeons about risk of infection again at his incision sites. It was a fruitless effort with lots of crying and discomfort. If he is to have an EEG, it will not be for at least 3 weeks post operatively. Let’s see if we try this again anytime soon.

Discharge has been planned!!! Joshua is coming home tomorrow barring any unforeseen calamities. We can’t wait. Joshua is ready to come home. He is not happy at the hospital at all which is a sure sign that he is feeling better. Steven and I are not looking forward to him having meltdowns once he comes home because he will not have visitors throughout the day. Joshua will be calling his grandparents and friends a lot once he arrives home to help ease the transition. He will not be going to school next week while he continues to heal and to prevent exposure to any illnesses, so he’ll be home playing with us and Jackie.

His next admission to the hospital will be for Nissen fundoplication on October 24. That visit will hopefully be only 3 or 4 days. I hope that Joshua can get to school for a couple days prior to that surgery. We’ll see, but I have my doubts. ITB pump surgery has been postponed for at least 4 weeks after his Nissen surgery. We’ve scheduled no dates yet.

We are really pooped out. Exhaustion has hit in a big way. Now that Joshua has improved, we feel as though our guard has come down and our bodies are responding in very physical ways. Thankfully, rest will be here soon. It may not be complete rest and relaxation, but being home will allow more rest than we are getting now.

We are so grateful for the support of our families, everyone at the hospital – nurses, doctors, pastoral care, security, etc., friends, those who have brought us meals, the synagogue, Friendship Circle, both our jobs, and many people who we do not even know for helping at the hospital, calling often, offering anything and everything, and for the continued prayers. It truly replenishes us, especially when we feel depleted of all ability to continue to exist.

Next update should be from home, and I can’t wait.

Erica

Monday, October 6, 2003 8:22 PM CDT

Good evening everyone. Sorry it has been so long in updating. Joshua is slowly on the mend. We spent a somewhat quiet weekend with family visting and me working.

Erica was able to get to Kol Nidre services on Sunday night while I attended services today. Tonight Jackie watched Joshua while we went to break fast at a friend of the Hilowitz'.

Anyway Joshua continues to progress slowly. His smile is back and energy level is improving. We are still having some O2 issues. His saturations seem to be dipping at night. Right now they want to be 100% sure he is ok before we start thinking of going home. We are hoping it is later this week.

Anyway that is all for now. I am a little to tired to continue so thanks again to everyone for your message of encouragement and support.

Steven

Friday, October 3, 2003 9:18 PM CDT

Good evening everyone and what an eventful day it was. Joshua slept in this morning, still battling from yesterday’s lethargy. All of us were clearly frustrated by the lack of progress with Joshua. His head was still swollen and he retched right away this morning. We received an early visit from Dr. Thompson (covering neurologist for Dr. Katz). Right away he agreed that this look like shunt failure. Erica pushed for a CT scan and Joshua was taken down right away. Needless to say his CT scan looked the same. At this point, this being his 25 th scan I am wondering if we get a free oil change or car wash or something.

Later in the morning Dr. Mazzola came for a visit. After some intense emotional discussion and a call to Dr. Thompson, she decided to tap the shunt. Guess what? It wasn’t working. She tried and tried but could not get any fluid out of the shunt at all. A little side note, I was leaving a meeting when the call came to get back to the hospital NOW! They are taking Joshua into the OR immediately. So since no fluid came out of the shunt that meant the shunt was failing and Dr. Mazzola whisked Joshua into the OR. The surgery was a success and the catheter in the shunt was clogged with what the doctor called “brain stuff”. Anyway, after the surgery Joshua slowly started to act like himself. He even smiled really big when he saw Miss Jackie!! As the afternoon wore on Joshua was on O2 but was definitely happier and the swelling decreased.

The folks in the PICU have been great and they are keeping a close eye on Joshua to make sure things keep improving. When I left this evening Joshua was sleeping with some blow by O2 but he is slowly on the mend.

Thank you for all of you message and support. Also thanks to Toba for bringing by a great Shabbat dinner. We are so blessed to have all of your messages of encouragement. We are all taking it day-by-day and are looking forward to small improvements tomorrow.

Steven

Thursday, October 2, 2003 8:30 PM CDT

Yesterday afternoon was not much of a better time after I posted the update. Joshua’s spasticity and pain became out of control. Morphine, Tylenol, Motrin, and lots of extra spasticity meds helped and Joshua finally fell asleep last night.

Our hopes that today would be a better day did not exactly come to fruition even though Joshua slept through the night only needing blow-by O2. He even had a chest x-ray early this am with the nurse and went right back to sleep. Joshua woke up cranky but his O2 saturation in his blood was good and he did not need O2 during the day today. The retching started at about 9:30am this morning and hasn’t stopped. He’s retched about 15 or more times today and only had one feeding this am! He even vomited his meds as I was giving them through his g-tube.

We also noticed first thing this am that Josh’s head is bulging again. After I did my “Oh $%#@!!” dance and the doctors shook their heads in disbelief, a CT scan was ordered. Joshua’s color is not good, and he’s not his usual happy self. Neurosurgery says that the CT scan looks alright and the chest x-ray looks alright as well. We are left with a child that is miserable.

I have no idea what tonight or tomorrow will bring, but please keep Josh in your prayers. We’ll let you know more as we do.

Erica

Wednesday, October 1, 2003 2:44 PM CDT

Hi all. Sorry I did not update yesterday, but exhaustion and worry were taking over. Joshua's surgery was yesterday as planned. The shunt was placed from the right side of his head to the pleural cavity of his right lung. The surgery went well and included a full haircut. The most expensive haircut ever! Both Drs. Fried and Mazzola did the surgery and Joshua did well. Recovery from this surgery was more difficult than the past number of surgeries unfortunately. Joshua's breathing has been a huge concern up to about noon today. His breathing was rapid and shallow and Joshua was dropping his O2 saturations a lot. He has been on continuous O2 since the surgery. Since noon, Joshua has been smiling and talking more. He's also been sleeping on his back to help with the breathing, but it something he's not used to. Joshua was pretty bad last night and this morning. A number of the doctors were even thinking that the shunt would not be tolerated and would need to be moved out of the pleural cavity. Fortunately, the x-rays have shown no major fluid issues in his lungs. Hopefully with Joshua's pain being managed aggressively and with time for Joshua to fully recover and get used to the extra fluid draining to his chest, he will stabilize. We are feeling more hopeful this afternoon than we were this morning. We are waiting to see Dr. Lee (pulmonologist) to get her opinions and treatment plans. We are hopeful that Joshua will get off the O2 very soon. The care from Josh's whole team of physicians has been incredible, and they have been monitoring him very closely. We cannot say enough about how wonderful these doctors have been.

The surgery to correct Josh's reflux will likely be needed. We hope to talk to Dr. Valda (surgeon) today to make some decisions. In the meantime, we are accessing info from Josh's first Nissen fundoplicaiton so that proper treatment is planned. The earliest this next surgery will occur is in two weeks. Lots can happen in that time. Also, his ITB pump surgery may only be a month or two off. Plans for the pump will be made once we are home and healing.

Needless to say, Steven and I are a wreck. The grandparents are also a wreck. This surgery has been much harder for Joshua and for us than many of the past surgeries. We are looking forward to getting home and resting together as a family.

Thanks so much for all of the concern, prayers, thoughts, cards, emails, calls, and visits. There is tremendous power in the support of others.

We'll update as we know more.

Erica

Sunday, September 28, 2003 9:33 PM CDT

Hi all!! As usual, we’ve had our adventures in medicine since I last updated. Overall, Joshua has gotten rid of the infection quite well. His CSF cultures have all been negative recently, and the white blood cells in the samples have decreased to almost none. The kind of bug he had in his shunt is really quite treatable and has proven to be just that. Our concern that the titanium mesh in Josh’s head could get infected continues. We’ve noticed that Joshua has been more lethargic, has a slightly increased heart rate, and his temperature went up to 100.2 degrees today. Just in case, another blood culture and CSF culture was sent to the lab today. The doctors will continue to monitor him closely. We are hoping and praying that the mesh stays out of the picture.

Fortunately, a PICC line was placed in Josh’s arm on Friday by Dr. Percy with assistance from Dr. Seigal. Success was achieved on the first attempt with minimal sedation. As it turned out, the IV site in his foot blew moments after the PICC was placed. Talk about timing. Joshua is comfortable with it in his arm and it is functioning quite well. Unfortunately, the nurses need to stick him for blood draws occasionally because the PICC line should not be used to take blood.

Joshua’s shunt is scheduled to be placed on Tuesday morning. After discussion with both neurosurgeons, it has been decided that the final choice for placement of the shunt drain is to either the pleural cavity (area around the outside of the lungs) or to the jugular. First choice is currently the pleural cavity. Joshua is hopefully just big enough to handle the amount of fluid that will drain into that area. Close monitoring will be necessary in determining if he is not able to handle the shunt in that area. If failure occurs, it will be in the first day or in the first weeks of the shunt placement. Dr. Fried reassured me that if there is a problem, the drain may be able to be diverted to the jugular without full shunt revision. Though, he would need a chest tube to drain the fluid requiring an inpatient stay. We are anxious about the shunt being drained near vital organs, but we also understand that these are methods that are not uncommonly used.

Joshua will need also to have his reflux corrected again with a Nissen Fundoplication. No decisions have been made about when it will be done, except that it will not be done at the same time as the shunt placement. That surgery could be at the end of this week or during another admission. Decisions about the GI issues and their impact on pulmonary function will likely be made tomorrow.

Rosh Hashanah was not fun in the hospital. Although, many people worked hard to make it better than it could have been. Marianne Shulman brought us a delicious holiday meal accompanied by her son, Neil, and his shofar. What a treat!! Joshua absolutely loved the shofar and dinner was great. Others sent us wonderful holiday treats to help make this a sweet new year. We are very grateful.

I was able to get to temple Friday and today. Steven attempted to get there on Saturday but was sidetracked by a number of things – mainly Joshua. Jackie stayed with Joshua last night and had lots of fun playing so that Steven and I could join his family for Rosh Hashanah dinner. It was great to see the family. But, we found it very difficulty this year to be without Joshua when there were other children there. Looking forward to the next holiday. Joshua had two more visitors today: a rabbi from Chabad in Teaneck came to the hospital to blow shofar for Joshua and Tess the golden retriever came to visit with Joshua. Both were wonderful.

My grandfather is still in the hospital and, at 94 years old, had a pacemaker implanted today. He will hopefully be on the road to recovery and home with my grandmother in the next few days. My parents spent the holiday between two hospitals and temple. Yet another adventure in medicine.

This was not an easy holiday for any of our family and extended family. We look forward to a new year of health and happiness and only minor health crises. I think this is realistic.

I’ll update as I know more. That’s all for now.

L’Shanah Tova and our wishes go to all for a year filled with only good things.

Thanks for keeping Joshua in your prayers and thoughts.

Erica

Wednesday, September 24, 2003 10:18 PM CDT

Good news!! Joshua is feeling much better. His fever is gone and he is much happier. Poops have not been a major issue either, but we’re on the lookout. Joshua continues to be in the PICU with an externalized drain from his head while the doctors make sure the infection is out of his system. So far so good. Joshua’s cultures have been negative with white blood cells in his CSF decreasing drastically. All good signs. He's just a bit tired.

Joshua is frustrated being so limited in his movement and position due to the drain and IVs mainly from his feet. The expressions he is using to tell us that he is unhappy are remarkable. At this point, we are encouraging him to let us know that he is unhappy about being in the hospital and having people touch him so much. We are finding it allows him to get over the annoyance more quickly with a fast return to his happy self. He is spending a lot more time in bed lying on his back than we would prefer, so Steven and I are trying to make a conscious effort to get him up to sitting more often, especially since his wheelchair is off limits while he has the IV in his foot. "Vacation Music" helps alot. It's Disney music that makes him smile alot.

Joshua keeps “blowing” his IVs at an impressive rate, making us wonder if he will have access at all pretty soon. Therefore, we have asked to consider placement of more permanent IV access. Hopefully, Dr. Percy, one of the intensivists, will have assistance tomorrow for PICC line placement with conscious sedation. (Don’t you think “conscious sedation” is a bit of an oxymoron?) Wish us all luck. Joshua will need IV access for antibiotics for at least another week to ten days thereby necessitating consistent IV access. A PICC line may also allow us to return home sooner with parental administration of the antibiotics. Been there, done that. It’s a no brainer for us. It will also be valuable for the upcoming ITB pump surgery that will need to be rescheduled once Josh is healthy.

The other issues we are facing include shunt placement and GI issues. First the shunt: Joshua will have a shunt placed Friday, at the earliest. The dilemma is where to place it. One neurosurgeon is reluctant to put the end back into the peritoneum and would prefer placing it in Josh’s pleural cavity (the area around his lungs). Another neurosurgeon said that he does not recommend the pleural cavity in a child so young because it a technically difficult task. He recommends returning it to the peritoneum. The pulmonologist has gotten involved with her okay for the pleural cavity but explained possible risks. She also let us know that Josh’s chest xrays show increased lung disease, and she is surprised he has not had a bad pneumonia at this point. This brings us to the GI issues: The Pulmonologist would like to see his Nissen Fundoplication revised if the shunt is to be placed in the pleural cavity. Currently, his Nissen is doing nothing to prevent his continued reflux and needs to be revised but has not been a priority due to the involvement of the surgery. We are still awaiting conversation with GI and the surgeon to further discuss this matter. We’ll let you know the outcome.

One other thing: We must continue to watch for signs that the other hardware in Josh’s head – the mesh in place of skull from last year’s excitement – has infection. If that occurs, the mesh will have to come out and be replaced. No signs of problems there as of today. It looks good.

Fortunately, Joshua has a team of physicians caring for him that know him well and seem to really have his best interests at heart. We are grateful for these people in his life. The above events, however, bring home that Joshua is a child who will continue to visit the hospital more than most children, even those with disabilities, and we will continue to know the PICU staff as family. The intensivist was surprisingly a wonderful support to me yesterday as I was digesting all of this reality. He said to me that being Joshua’s parent is like being on a high speed freeway with no exit ramps and no slow lanes. There will always be things down the road that come on quickly. Steven and I will need to continue to handle everything that comes along. “Dull” and “Boring” may never be words that are part of our vocabulary.

Life in the PICU is different this time around. The acuity of patients is unbelievably high with head trauma after head trauma being admitted. The tension is high and the range of emotions runs the gamut. Sleeping there is difficult. The nurses and doctors have given us lots of support and are trying to keep things light when they come by. Mostly, they are thankful that we are attentive parents and are helping them out.

Joshua keeps us all going through crises. He is a blessing. This week I keep in mind just how much of a gift he is to me and Steven. I know that every day is a gift and things could certainly be worse. So if Joshua wants to get away with being a stinker, sometimes I just have to let him.

My grandfather continues to stay in another hospital recovering from what looks to be a heart attack and healing from his fractured humerus. My parents are running from hospital to hospital but managing to keep their heads on straight most of the time. It looks like Rosh Hashanah will be spent in the hospital for both Joshua and his Great Pop-pop Bill. Grandma Marilyn has decided to cancel the feasting portion of the holiday opting for services and visits to family. Steven and I will try to get to Grandma Ellen and Pop-pop Paul's to see the Gendel family.

Thanks for all the prayers and support during the latest crises. We will survive with your help. The amount of emails, web hits, mail, phone calls, phone messages, etc. continue to astound us. That Joshua has touched so many lives is amazing.

We’ll post again soon.

Erica

Sunday, September 21, 2003 9:20 PM CDT

Hi all. First, I must give thanks for all of the support that so many people have provided us through our latest medical crisis. We are feeling much better…enough that we know we will survive this latest ordeal.

Good news: Joshua is already feeling better. His fever has finally come down with a highest today of 100.6 degrees but mostly around 99 degrees. Joshua is responding well to the Vancomycin and is obviously getting rid of the infection. We have confirmation today that the bacteria, staph-epi, has been found throughout his shunt in the culture with no other types of bacteria present. Joshua’s suspected UTI was false, thankfully. Treatment is only needed for the one bacteria at this point. We are looking at a hospital stay of about two weeks. Keep praying.

The main concern now is maintaining IV access for Joshua’s antibiotics. He has blown lots of IVs in the few days at the hospital, so a PICC line will likely be placed to maintain his access and not ruin all of his veins.

We are also beginning to see Joshua start the diarrhea that he often gets when on the big antibiotics. This is also making his routine medication management difficult because he may be “pooping out” the drugs he needs to manage severe spasticity and seizures. Joshua’s spasticity has been very bad over the past few days requiring him to get many extra doses of his oral drugs to keep him comfortable. The sweating associated with the spasticity has also made keeping the bandages over his head incisions and sutures in place. We’ll have to get our favorite seersucker-wearing neurologist on the ball with big-time spasticity control. The current medical events also further delay Joshua’s surgery for ITB pump to control his spasticity. Joshua will need a significant amount of time between this infection and the surgery to be sure he is at his best.

Steven and his family appreciate the loving thoughts you have all sent his family in memory of Grandma Pearl. More crisis…my grandfather has fallen and broke his shoulder quite significantly and is also experiencing acute heart problems that have landed him in the hospital today. The family is further stretched.

Thanks again for the tremendous outpouring of support for us. It continues to be invaluable. Web hits, web links, emails, web postings, phone calls, visits, mail, prayers, and loving thoughts sustain us in unfathomable ways.

Exhaustion has taken over….off to bed I go. More to come in the next few days.

Erica

Friday, September 19, 2003 9:07 PM CDT

Unfortunately, we write with more bad news. Joshua has been sick and experiencing fevers for two whole weeks now. We visited the ER a week ago last Thursday and Saturday, both with discharges to home. Joshua’s fever spiked to 104 degrees on Sunday and he has not had a normal temp the whole time. The fevers and lethargy, moaning, retching, vomiting, and diarrhea continued without letting up when we went to the ER again this past Wednesday. Just as they were going to discharge us again, Joshua’s head began to bulge, indicating possible shunt malfunction. After rushing off to x-ray for a shunt series and CT scan to look at his ventricles, Joshua was finally admitted with possible shunt failure and “fever of unknown origin”. As frustrated as we were, we were pleased that we might finally find what has been making Joshua so sick and begin to make him better.

Joshua finally made his way to the pediatric floor around 3am and greeted his longtime friends. Thursday, Joshua’s shunt was tapped to check to see if there might be any bacteria hiding there that may not otherwise show up on his still normal blood work. An hour later we had our answer that bacteria were indeed present. The shunt then had to be removed with an externalized drain placed to monitor his CSF (cerebral spinal fluid). At the end of Joshua’s worst day in two weeks, he made his way to the OR with a fever of 103.6 degrees. By 8 pm last night he settled back into life at the PICU.

All the while, Steven and I and our whole family have a strange feeling of déjà vu. Aaarrrgh!! Fortunately, we know the drill too well. We just never wanted to experience an extended stay at the PICU again. Joshua, however, is well aware of his surroundings and is really mad at us and lets us know that he is not happy about being in the hospital every chance he gets. Fortunately, grandparents heal all and are helping a lot.

We found out more about the infection this afternoon. Joshua has a staph infection called staph-epi (spelling?) which is NOT like the staph infection he had last summer. This one is much more easily treated. The infection is likely localized to his shunt and was dumping the bacteria to his peritoneum, which became greatly distended but never developed peritonitis, thankfully. The infectious diseases doctor told us that it is quite possible that the bacteria made it’s way into the shunt with the revision in August, but it could also been introduced another time. Either way, the bacteria, which exist on all of us, can lay dormant for quite a while before proclaiming itself to the world. Joshua also has a urinary tract infection (UTI) which will also be addressed but is very treatable.

Treatment right now is IV Vancomycin but can change if the cultures grow out anything different. CSF cultures will be sent to the lab daily and a urine culture was sent tonight. Joshua will continue to have fevers for a while longer until the antibiotic gets into his system a bit more. Joshua is already more content than yesterday, but he’s very spastic with lots of spasms and startles.

We are trying to get ourselves psyched up for two plus weeks living in the PICU. It hurts! Fortunately, we continue to laugh and are grateful for familiarity of the staff and physicians. We’ve seen a lot of friends and familiar faces already.

Steven’s grandmother died this past Sunday compounding the emotions of the family. The funeral was Tuesday and very well attended. We were able to make it to the first shiva service where there was still incredible support for his family. Although we were unable to participate in shiva beyond Tuesday, it has been heartening to hear about the support lent to Joshua’s Grandma Ellen and Aunt Bobbi. We also realize how much the grief is complicated by Joshua’s illness, hospitalization, and surgery. Everyone seems to be holding together with staples, duct tape, and a whole lot of glue.

Thanks for all of the prayers, hugs, calls, emails, and web hits. It’s helping us through a tough time. Joshua is very sick, but we know that there is smooth sailing once we make it over this bump in the road.

We’ll post more in the next couple days.

Erica

Tuesday, September 9, 2003 8:49 PM CDT

Back to back updates. Wow! Yes, I am feeling alright. Joshua on the other hand is not feeling alright. He has a cold or virus of some nature that is accompanied by a fever for the last four days. He is definitely not himself. However, present a grandparent to Joshua and he becomes a different child. Grandparents heal all. Thank goodness for grandparents.

Needless to say, there will be no surgery this Thursday. As much as we and the doctors are excited for Joshua with the pump, surgery when Joshua is not feeling well is not a good thing. The neurosurgeon prefers two weeks without fevers. Joshua is now scheduled for ITB surgery on October 10th. More time to be nervous.

We are nervous anyway because we are not sure why he is sick. Strangely, Joshua’s head stopped bulging on Saturday which seemed to be accompanied by the fever, retching, and bad poops. It is almost eerie how his head is not bulging anymore. Could his shunt failure issues have resolved? The neurosurgeon is reassuring us that it is just coincidence that the fever started when the bulging stopped; and yes, the shunt may have resolved itself.

Joshua has not gone to school yet this week and we are hoping he will get there by the end of the week. The transportation issue is still an issue with a new bus company showing up on Monday. Josh hasn’t yet been on their van. You’ll see us following him on the day he gets back to school.

Work is busy for both of us. Good busy for Steven. :) I am amazed that I get all of my hours in each week with everything happening with Joshua.

We’ll let you know how Joshua is doing as things progress toward surgery.

Thanks for your thoughts and good wishes. We’ll update soon.

Erica

Thursday, September 4, 2003 9:36 PM CDT

Hi all. It has been a long time since updating. Unfortunately, this time no news was NOT good news. We’ve just been so busy and exhausted.

Since Joshua’s IT Baclofen trial, we have scheduled a date for pump. The surgery is scheduled for September 11 th. Yup, we agreed to it. A lot of people choose to avoid that date, so we are hoping for extra attention throughout the hospital. Joshua’s spasticity patterns changed somewhat after the trial; but, he’s basically back to his pre-trial pattern. Nighttime is generally the worst and often requires extra medications to just fall asleep. We are looking forward to getting rid of lots of the drugs that he is taking for the spasticity. Joshua will probably need some oral drugs to help with bad spasms, but he should still have a greatly reduced need for medications.

Big news is that Joshua’s head began to swell in the middle of August. We talked to the neurosurgeon frequently and went for a CT scan but went home with hopes that he would not have many more clinical symptoms of shunt failure. BUT, Joshua went into acute shunt failure on Thursday, 8/21. We went to the ER to meet the neurosurgeon to have his shunt tapped at 3pm. When nothing could be tapped, Joshua was then hurried to surgery by 5pm. He was done at about 6:30pm. We were astonished by the speed of it all. Much of it was due to opportunity that an OR was available. Dr. Mazzola told us that the shunt gods must have been shining on Joshua because he only needed one part of the shunt replaced meaning only one incision. Joshua went to the PICU and he was discharged less than 24 hours after admission!! His post-operative CT scan was markedly different. Phew!

Keep in mind that we were planning to go the shore on Friday, 8/22. Yep, this vacation was missed two years in a row due to hospital admissions, and we were really looking forward to finally getting away and enjoying the shore. Steven said that a November vacation to the shore has a nice ring to it. The sand and ocean will still be there. So what if we need to wear parkas to sit on the beach! August vacations must be overrated. As it turned out, Joshua had permission to go away right away. We were amazed, scared, and excited. So with lots of help from Gramma Marilyn and Pop Bobby we got packed and down to the shore to have lots of fun with Gramma Ellen and Pop-pop Paul, and Aunt Wendy, Uncle Jeffrey, and baby cousin Jared. A couple rough nights aside, the vacation was very relaxing. Only one visit to a “doc in a box” for an ear infection and lots of fun. The weather was perfect. Joshua loves the beach and ocean (with the help of a beach wheelchair). He was squealing with excitement and happiness when he was in the water. He amazed with his love for swimming in the ocean. Thank goodness we had perfect weather and really enjoyed ourselves. Fun, Fun, Fun!!!

About halfway through vacation, we noticed head swelling again. Joshua did not have any other clinical symptoms so we were able to finish out vacation with multiple calls to the neurosurgeon. He had another CT scan on Tuesday that showed that he has increased pressure. Fortunately, Joshua doesn’t have the other clinical symptoms of shunt failure besides the swelling, so we wait. The goal is to wait until the 11 th for the ITB pump surgery to investigate whether he needs another shunt revision. Hopefully he will make it without going into shunt failure sooner.

Seizures continue with varying patterns and intensity. Dr. Katz even feels that some of the newer possible seizures that we have been treating may have been a result of intraventricular pressure and may resolve with shunt revision also allowing Joshua to decrease some of the anti epileptic drugs that he is currently using. For now, we wait until after the pump is placed to see how he does.

School started yesterday. Josh is very happy to return to Miss Amy’s class with Miss Jackie, his nurse. Transportation has been a problem already with none yesterday and problems today forcing Steven to remove Joshua from the van partially into the ride to school. We are hoping that this matter will be resolved tomorrow. It has eaten up a large portion of both Steven’s and my work time.

As September 11 th approaches, Steven and I are getting increasingly anxious. It’s those dang planned surgeries that get us. The surprise ones give us little time for anxiety. We also know that recovery from this surgery will be lengthy and likely painful. We’re just trying to keep in mind “short term pain for long term gain”. We are also anxious about the shunt failing prior to the 11 th.

We are happy to report that Pop-pop Paul is recovering from surgery this past Tuesday for an aortic aneurysm. He is home healing and doing all of his usual activities…slowly.

I am holding up my eyelids with toothpicks, so it’s time to finish up. We’ll be posting more often starting next week.

Thanks for all the love and support that keeps coming our way. The calls, letters, emails, web postings, hits, and kind thoughts help so much. Please, keep Joshua in your prayers and thoughts as we embark and his next journey in search of spasticity relief.

Please also keep Josh’s Pop-pop Paul and friends Mary, Stefanie, Chris, Sarah, Patrick, and the Tripp family in your prayers and thoughts as well.

Erica

Thursday, July 24, 2003 8:10 PM CDT

Hello all. I’m writing you from home with both of my guys here with me. Joshua is very happy to be home. Tuesday was a difficult day for Joshua at the hospital because he felt better and just wanted to go home. He was exhausted and did not want Mommy at all. He was ticked off that he did not have a welcome home party and then had a difficult night’s sleep. Joshua woke up happy Wednesday and was thrilled to see his nurse Jackie. Joshua went back to school today and had a very good day, especially in PT.

We are so happy that this hospital stay was a success and quite short in comparison to previous admissions. The idea of getting Joshua off many toxic oral drugs and relieving his pain and discomfort from the ever increasing spasticity and spasms is astounding; although, the thought of another surgery is un-nerving. Today’s reality is that the oral drugs that Joshua was on prior to the ITB trial are not currently meeting his needs and have needed to add and increase a few more doses of the drugs he takes for spasticity. Sleep has been significantly affected. Steven and I feel tremendous pain that we cannot relieve his discomfort as “parents should”.

With all of these events, Steven and I feel that a new chapter in Joshua’s life is being written. Once Joshua’s spasticity is reduced, there’s sure to be an array of opportunities ahead of him. We are very hopeful. The first few weeks and months after the surgery to place the pump may be challenging for Joshua, but we know the long term gain from the ITB pump will outweigh those challenges.

Thanks for sticking through this latest medical “event” (definitely not a crisis at this point) with us. I am astonished that there have been over 27,000 hits to this website since we began writing. That alone is support. We cannot even express adequately how much we appreciate all of the caring, love, thoughts, meals, notes of support, and prayers given by so many people. Joshua would not be doing as well as he is without it. Steven and I would not be standing upright without it. The support carries us through the difficult times.

Please also keep Joshua’s friends Patrick, Mary, Stefanie, Sarah, Lydia and her family, and Chris in your thoughts and prayers as well.

Erica

Tuesday, July 22, 2003 11:47 AM CDT

We are going home today! Joshua has had very good results at the 375 microgram level of ITB. We are all pleased. The past few days he has been happy, smiling, and playing.

All of this means is that the trial was successful and we will plan the surgery for September. All of the doctors, nurses, grandparents, and us are very excited that this worked so well. Dr. Mazzola even mentioned that she might do more extended trials for other children in the future.

The folks from HUMC PR department came by to take some pictures of Joshua and promote the ITB trial.

Yesterday they removed the lumbar catheter (sp?) and within 30 minutes Joshua started to tense up. Immediately we started him back on the oral drugs and it helped but nothing like having the continuous dose of intra-thecal baclofen. We had the chance to come home yesterday but Joshua was having some challenges with an oral antibiotic. It seemed his stomach did not want to digest it. So for precautionary sake they put in a new IV and went with an IV antibiotic for 24 hours.

Today Joshua has tolerated his feeds well and I will pick them up from HUMC around 3:00 pm, then home. Joshua can go back to school immediately.

We are looking forward to the rest of our summer, time at the beach and preparing for the next surgery. Joshua can't wait to see Miss Jackie and we can't wait to be home.

More to write soon, thanks again for all of your thoughts and prayers.

Steven

Saturday, July 19, 2003 10:02 AM CDT

We continue to see progress. But, the last couple days have been trying for Joshua and for us. Joshua has tolerated the latest dose increases well and has needed his PRN (as needed) drug doses multiple times. After two very poor nights of sleep, thankfully, Joshua had a good sleep last night. He’s been quite lethargic from sleep deprivation. Actually, he’s been quite stoned from the extra drugs he’s needed. Joshua also had an unexplained fever that could be complicating the trial a bit.

Fortunately, the team of professionals and family who are monitoring Joshua agree that the trial has been a success to this point. Josh’s spasticity has been greatly reduced. We still need to gather information including Joshua’s functioning when he is alert and able to play. The neurosurgeon would like to see him continue the trial through Monday or Tuesday. The neurologist has seen enough to agree that the we are likely to schedule the Intrathecal Baclofen pump surgery for the Fall.

The challenges for Joshua are the severity of his spasticity and the complexity of titrating the pump to meet his very challenging spasticity. The surgery for the pump will be more involved than the surgery he had this past Monday. I saw the pump yesterday and was able to ask the rep from Medtronic lots of questions. She will be back to see Joshua on Monday and will video tape him to note the spasticity changes since last Monday. Steven should be able to see the pump then too.

Steven and I are rather exhausted from a couple sleepless nights, but other than that, we are faring well. We appreciate the Shabbat challahs and kugel from the Grossbaums. (Nobody makes a better challah than Toba.) My mom has been invaluable with her support, daily presence, and astute observations. We’ve been overwhelming her with information, but she’s been a sport. Joshua’s grandparents have all been important for him through this drug trial.

Looking forward to more good news today. We’ll keep you all up to date. Thanks for all the support, calls, guestbook entries, website hits, and visits. Steven and I rely on it to recharge our own batteries. Keep it coming.

Erica

Wednesday, July 16, 2003 8:57 PM CDT

Progress!! We are very happy with the results of the IT Baclofen trial at this point. We've seen impressive improvement in spasticity.

BUT....We need to see Joshua on the IT Baclofen without lethargy that follows dose increases. So in an attempt to do this, we decided, with the neurosurgeon, not to increase his dose this am. He was alert by mid to late morning and even sat in his chair for 15 minutes. He even played on his tummy and showed us that he still has decent head control. Then the spasticity kicked in. It was about 27 hours after his last increase. Joshua's spasticity increased more and more with every hour. He became more and more miserable. He was in pain. His temperature also rose as the spasticity increased. And, he cried for hours.

Neurosurgery was summoned to the PICU before they left for the day, and discussion ensued about whether or not to increase the IT Baclofen dose before they left for the day. We thought it would be wonderful if he could sleep off the lethargy associated with dose increase overnight and be alert for the morning or at least the afternoon. Well, the complications with increasing at the end of the day included: probable changes in respiratory status (which occurred last night), risk of needing an increase tomorrow evening after neursurgery would have left (because only neurosurgery changes the dose, NOT the intensivists at the PICU), and not having someone available to decrease the dose overnight if there were to be a problem with the dose increase (necessitating them to turn off the pump at that point). In all the discussions we had with doctors, nurses, family, etc. we decided to use his usual oral spasticity drugs as needed until the morning when the IT Baclofen dose will be increased while a full neurosurgery staff is available. Safety first.

A very interesting point came up in the discussion. Joshua is the first pediatric patient at HUMC to have this type of IT Baclofen trial. Joshua is a pioneer in IT Baclofen territory at this hospital. They have implanted Baclofen pumps in other children and adults, but the trial before the pump has been very different for those people as it is an outpatient procedure that determines if the person experiences an effect of the drug. We are going further to find the longer range results prior to another surgery. However, more questions arise about emergency management during the trial. We have been reassured that Dr. Mazzola has done this many times before in Pittsburgh before she came to HUMC.

I left the hospital much later than expected to get some much needed rest before a busy day tomorrow because Joshua was still unsettled. Steven just called and said they just gave him his third PRN (as needed) dose of oral Baclofen and a second PRN dose of another anti-spasticity drug and he was still not settled for sleep. This could be a long night for Joshua, Steven, and the nurse.

We are happy that Joshua in in the PICU because he is getting close attention and excellent care by staff who have known Joshua for a long time and who are capable of handling any of the fun and exciting stunts Joshua will exhibit from minute to minute. Example: Joshua needs two people to move him from bed to lap or chair or back because of all the tubes and monitoring devices attached to him. (He's on antibiotics via IV and is getting some continuous fluids.) We have found the familiarity of the staff to be comforting.

Steven and I had nearly identical experiences while sleeping, or trying to, in the parent lounge. We both found ourselves experiencing the vivid details of Joshua's very long, arduous, and sometimes scary hospital stay last summer. And, those cots are much more uncomfortable than either of us had remembered. OUCH!!

I'm getting over a cold, so I'm about ready to pour myself into bed. I'm waiting for the last call from Steven to say that Josh had settled into sleep.

Thank you so much for the support that you all have continued to provide for us during this crazy time. It helps keep us going every day.

More to come tomorrow.

Erica

Tuesday, July 15, 2003 9:42 PM CDT

Good evening all. I will keep this short since exhaustion is starting to take over. I just got home from the hospital and Joshua looks good. He slept well through the night after handling surgery and laying on his back or stomach all yesterday. One challenge we faced was Joshua spiking a fever in the 101 range. We are working to control it with Tylenol. Joshua was very happy today smiling and playing with Mommy and Grandma Marilyn. After a 50 microgram increase in the IT Baclofen Joshua felt the effects in 2 hours and became very lethargic.

Joshua took a nap in the afternoon and woke up around 5. Erica went out for dinner so it was time for Joshua and Daddy to play. He was a little tired and not to active. Then a visit from John for some music and Joshua perked up. Around 7 Josh was in typical form and talking to everyone.

I spoke to Erica a little bit ago and she said he went to sleep around 9 and was happy. We are still in the beginning stages of the trial but are optimistic with the progress. We hope to see more improvement for Joshua and getting him back onto full feeds as well as removal of the foley tomorrow.

Thank you all for your thoughts and prayers.

Steven

Saturday, July 12, 2003 9:04 PM CDT

Hi all. It’s that time again….time for admission to the hospital. It’s actually been 10 ½ months since the last time Joshua was in the hospital. This admission is a planned admission to try to reduce Joshua’s spasticity. He will be admitted on Monday the 14th in the morning and spend about 15 minutes in the operating room followed by a stay in the PICU that is likely to last two weeks. The good news is that Joshua is the healthiest he has ever been and weighs in at a whopping 42 pounds! He is eating well through his gastrostomy and making incredible developmental strides. This is a good time to attempt to control the spasticity because he is so healthy and because there will likely be fewer sick/contagious type patients in the hospital.

FYI: Spasticity is the rigidity that Joshua experiences as part of his cerebral palsy. It causes his muscles to spasm and tighten, often looking like he’s a strong kid. This is involuntary muscle movements due to brain damage that can cause damage to his tendons, ligaments, and is sometimes related to broken bones and painful contractures.

Details: Joshua is going to have a trial of Intrathecal Baclofen (ITB). Baclofen is the main spasticity controlling drug that Joshua currently takes orally (actually through his g-tube with all his other drugs), but Baclofen requires high doses to cross the blood to brain barrier. High doses also come with side effects. Baclofen is also a short acting drug. The difference with what we are trying on Monday and with the Baclofen he currently takes is that ITB is administered directly into Joshua’s cerebral spinal fluid. We’ve been told that Baclofen administered orally requires a dose 1000 times greater than the dose given via ITB!! ITB will eliminate the side effects associated with oral drugs.

So how does ITB work? Baclofen is administered directly into the CSF through a catheter that is surgically inserted into the spine. The trial that Joshua will be having will involve a catheter that is externalized with the drug infused through a regular IV pump. This externalized catheter can be in Joshua for a maximum of two weeks. In that time, Joshua will be monitored by physical therapists, neurosurgery, neurology, and family to evaluate changes in Joshua’s spasticity associated with changes in the drug dosages. If the trial is successful, we will make the decision whether to have a pump surgically implanted into Joshua stomach area at a later date. This pump runs on a batter, like a pacemaker, and is refilled monthly at the doctor’s office.

Side effects/risks: Joshua will be sleepy for a couple days while his body adjusts to the drug. This is a surgical procedure, so he will be exposed to anesthesia and possible infection from having an open area on his body. Head control may be compromised.

This is a big step in trying to control Joshua’s ever present and painful spasticity and spasms. We are not going into lightheartedly. At this point, Joshua is being treated with high doses of three different spasticity controlling drugs that are administered no less than 14 times a day from 5:30am to 11pm. These drugs are quite potent, can have toxic effects to his liver, and do not adequately meet Joshua’s needs. Dr. Katz had told me that Joshua has failed medical management for spasticity, but I think that it is more like medical management has failed Joshua. We are very hopeful that this will help Joshua. Perfect is something we wouldn’t recognize if it knocked us down, so perfect is not what we are expecting. Better would be very nice. If the trial is completed without success, the next steps to discuss with the neuromuscular team will include rhizotomy; Steven and I don’t even want to go there!

Joshua will be missing most of, if not all of, the end of school to be in the hospital. He’s gotten a lot out of school this year and we are excited about the next school year. Joshua is very much aware of what his happening in his life and wants to interact with the world more and more. Now that Joshua is four years old, he has begun having temper tantrums. He wants to be with his grandparents as much as possible and looks forward to daily phone conversations. I think that Joshua is more frustrated with his limitations lately, and we hope that ITB will provide Joshua the ability to interact with the world more easily.

Steven’s been working “like a dog”. Joshua misses his Daddy and has begun letting us all know about it. Fortunately, my parents have been a huge help for me to care for Joshua, especially when my back was not so good last week. I couldn’t do the Mommying I do without them.

We’ll be updating more frequently while in the hospital. So check in often. Please, keep Joshua in your thoughts and prayers. We appreciate it in more ways than mere words can express. Realize that your support provides sustenance for us during challenging times like this.

Also keep Joshua’s friends in your thoughts and prayers: Patrick, Mary, Stefanie, Sarah, the Tripp family, Mallory. We think of them all often.

Time for me to finish up a few more things before collapsing into bed. Be well.

Erica

Saturday, May 17, 2003 9:41 PM CDT

I know, I know. We are long overdue for an update. We are going to give you the good, the bad, and the ugly.

The Good:
Joshua is doing incredibly well in school. He is making progress in all his therapies. And, he is very motivated to do more every day. Joshua has been talking more and more at school and is not having anymore ‘Waa, waa baby’ crying fits, unless it is a very bad day medically. Standing has been improving for Joshua with him getting stronger to the point of pushing up to stand from squat position. Joshua is activating his switches more quickly and more reliably with more thoughtful positioning of the switches and Josh’s head. He especially loves playing computer games, and does so with minimal prompting. Jackie, Josh’s nurse, has come home from school multiple times in the past few weeks glowing with excitement about Joshua’s accomplishments. He is amazing us.

It’s time for a big boy wheelchair for Joshua, so we visited the wheelchair clinic at Children’s Specialized Hospital a couple weeks ago and had him assessed and fitted to a wheelchair. It should be arriving in September. It takes at least three months for the wheelchair to be authorized, ordered, and custom fitted for Josh. While at the clinic, Joshua tried out a power chair with head switches. He was so cute. He was not able to do much more than go in circles, but he was doing it all by himself. No body else was touching the chair. I was nearly in tears with excitement. I suppose it must be like watching your child take his first unsteady steps. It was a priceless moment. For now, though, he is not a candidate for a power chair. We are going to do lots of practicing over the next few years to get him ready for power.

Joshua has been quite healthy lately, that is up until this week when he got a very bad virus with high fever and aches and pains. Otherwise, Joshua is now a very hefty 38 pounds. He is fat. I can’t believe I have a fat child. His stomach is so big that he has outgrown everything in his dresser and closet. We’ve bought clothes in size 5 and 6 and he seems to be outgrowing some of those already. His feet have grown as well. Even with all the weight gain, Joshua has managed it fairly well. We continue to work hard for Joshua to gain better head control even with the weight gain. We actually got Joshua fat on purpose. The goal is a certain weight to do a trial of Intrathecal Baclofen this summer. We are hoping to find a better way to control Josh’s severe spasticity.

In our quest to avoid surgery for the Baclofen pump, we have begun Craniosacral Therapy with Joshua. As the therapist says, “It’s high on the woo woo scale.” However, the results are impressive already. I can’t even find a good way to explain this therapy. We are going to continue with it as long as we see reduced spasticity.

Passover was incredible this year!! Steven and I worked very hard for Joshua to be a participant by asking the Four Questions. The Four Questions, for those of you who do not know, are asked by the youngest child at the table. We borrowed a special switch from school and recorded the Four Questions. Joshua practiced for weeks. Passover came around and Joshua was a champ. He asked the questions at Gram and Pop’s at the pre-Passover seder while the family sang along. He asked the questions at Grandma and Pop-pop’s while the family cried with excitement. Josh wound up crying afterward, too!

Joshua turned four this past week. He is officially a big boy. Anticipation of his birthday was very exciting for us because last year was awful celebrating in the hospital. We planned a birthday party for him on Mother’s Day and it worked out beautifully. His music therapist came and sang with Joshua and his friends, we had cake, and by the time it was over, Joshua was pooped. Mother’s Day was wonderful for me. My child is healthy and happy and making great strides. I feel so lucky for each new day. We can’t believe that we have a four year old.

The Bad:
Joshua is having new seizures. We have not yet decided to go into “The Hotel” for an EEG but we are closely monitoring Josh. He may be having Partial Complex Seizures with loss of consciousness. So far, no emergencies measures needed. We’ll keep updating about the seizures. Joshua continues to have his typical seizures daily about 5 to 20 times. Some of the seizures are induced by certain events or experiences, so they can be predicted.

The Ugly:
We still don’t have the Vail Enclosed Bed that has been ordered and denied by Medicaid. Our primary health insurance also played games with us about paying. We appealed the Medicaid denial on the basis of not having a reason for the denial. Fortunately for us, a very special person, who happens to be an attorney, got involved. We were so anxious about how to negotiate getting the bed with insurance and the very little money we have. It is unbelievable that just to try to do the best for your child, you have to have an attorney involved. The hearing was this past week. And……WE WON!! Primary insurance covered part of the cost with Medicaid covering the rest. Vail will be sending the bed to us this coming week. Joshua can’t wait to have a big boy bed and get out of his baby crib. At four years old, he’s no baby.

Joshua continues to do so well with support and prayers from many. We are truly grateful for it. We never know what will be in the next few months, weeks, or even days.
Every day is a blessing. Joshua goes to bed every night knowing that he is loved. He is very happy and gives love to all – with wet kisses and big hugs.

Please, include Joshua’s friends Mary, Patrick, Danielle, Stefanie, Lydia, and Chris in your thoughts and prayers.

Last but not least….NEW PICTURES!!

Erica

Thursday, March 20, 2003 7:49 PM CST

I promised Erica I would make the next updates shorter. Let’s just say days 2-5 where just as fun an exciting as the first. We visited different parks, tried HOT Krispy Kreme’s (yum), ate a lot, laughed, saw lots of characters and had a great time.

Day 2 was spent at Epcot. We mostly did the rides in Future World in the morning. During our ride on Test Track the car broke down and they had to stop the ride and take us all out the emergency exit. No big deal but really neat to see the behind the scenes ride. Later we headed to France for a late lunch. On the way back to our car we ran into Sleeping Beauty, Rafiki, and Timon. Then, we decided to head back to the Village for a nap. After resting for a little bit we went back to Epcot and walked around the countries. We stopped in Germany where Joshua and Jackie colored a mask for Josh. He thoroughly enjoyed it. Then we headed over to the Mexico ride. After the ride we decided to take a chance and watch Illuminations. This would be Josh’s first time seeing and hearing fireworks. Well Joshua loved it! We prepped him before they started and once he saw the first one launch he was into it. Needless to say we where thrilled to watch him enjoy the fireworks. We took a slow stroll back through the BoardWalk to get some dessert at the bakery and back to the car. A long day but lots of fun.

Day 3 was a slow day, taking our time and trying out something different. We all went to bed late and we decided to sleep in and take our time in the morning. So it was off to Universal Studios. We walked around Universal and soon discovered that it is more geared towards older children and adults. Most of the rides can induce seizures so we just took a leisurely stroll. E.T. was the one ride we did go on, and it was lots of fun. We stopped for something to eat and then headed out of the Park. Of course we did not make it out before a huge rain cloud came over us and dumped a lot of rain. So we all got wet and laughed while we walked back to the car. After a brief rest we headed to the Wilderness Lodge for dinner at the Whispering Canyon Café. Let’s just say it was an all-you-can eat smoked meat fest! Well did we eat and eat and eat. Jackie had a party all to herself!! Add in dessert and I was moaning, thank heavens Jackie had Zantac with her. Back to the Village for some rest tomorrow would be another big day!

Day 4 was back to Disney and over to Animal Kingdom. We took our time getting up and headed to It’s Tough to Be a Bug. Joshua loved it (are you getting the theme here) and looked so cute with his bug eyes (3-D glasses) on. We then went over to the Lion King Show. Last year Josh did not like the show and screamed, well this time he was really into it and enjoyed the experience. Then we rode the safari and saw lots of animals including, hippos, rhinos, cheetahs, giraffes, and elephants. Finally, we walked over to Dinoland and then headed out of the park. Since this was our last day in WDW we wanted to head back to the Magic Kingdom for Josh. On our way back to the Magic Kingdom we bumped into someone from my office, we gave them plenty of tips about what to see and do since they only came for the day. We went straight onto the rides: Snow White, Peter Pan, It’s a Small World, Pooh, etc. We had a blast. Then we headed to Toontown to say our goodbyes with Mickey. We were all thoroughly exhausted but very, very happy. Erica was so happy that she did not want to go. We went back to the village for a mellow night for Josh and Miss Jackie while Erica and I went to Downtown Disney for some shopping a quick bite.

Day 5 was our last day. We were all very sad. We said our teary goodbyes to Miss Jackie and look forward to seeing her soon. Joshua had a great time with her and we appreciated the help. We had a late character breakfast at Ohana at the Polynesian. Joshua loved the interaction with Mickey, Goofy, and Chip n Dale! The pictures we have these moments with the characters do not do it justice. Goofy even pushed Josh’s wheelchair around during a conga dance through the restaurant. After breakfast we walked around the Polynesian and the headed over to the Grand Floridian. We asked Josh if he had fun and he said yes. Then we asked him if he wanted to go to school and he frowned! That was a first for him and us. So we asked if he would like to stay on vacation in Florida and we gave us a huge smile!! Josh gets it!! Disney is much more fun that being at school! After strolling around the hotels and grabbing a quick lunch at the Animal Kingdom Lodge we headed to the airport. We had an easy trip home but wished we could have stayed a little longer.

Back to work, snowstorms, school, life, etc.

He is definitely remembers the trip. When we line up his stuffed Disney characters he starts talking to them very loudly and when we ask about the trip he smiles. We all had a great time and have wonderful memories we will always be thankful for Make-A-Wish and the services they provide.

Joshua is doing well since we returned. He is back to school and learning a lot. He is well versed in colors, numbers, shapes, and some letters. Josh knows his body parts and is communicating with everyone in his world very successfully with more words, smiles, gestures, and his switches. Joshua’s spasticity continues to be a huge issue that causes most of Josh’s unhappiness in life. He is still the happiest little boy around in spite of it. Joshua had a treatment of Botox at the end of January with no results. We were forced to try alternate drug therapies and are unable to use the conventional drugs for bad spastic episodes or days secondary to adverse reactions to ativan and valium. Therefore, Joshua continues to take a drug that is not often used, called Datrium (dantrilene). It is a very toxic drug to the liver but can be very effective for spasticity. Since Josh’s liver has been good for the last three to four months, we decided to give it a go. Most recently, Joshua went to the Neuromuscular Clinic (aka Spasticity Clinic) at HUMC. It was an informative meeting giving a different Cerebral Palsy diagnosis that is more inclusive of all his features and giving us a more aggressive plan to treat Joshua’s spasticity. Joshua has no more real oral drug options and will need to have a trial of a more potent form of Baclofen that is infused directly into his cerebral spinal fluid. This trial necessitates him to gain weight first and then have an inpatient stay at our favorite PICU. If it is a successful trial, Joshua will then need to gain more weight and will have an Intrathecal Baclofen Pump implanted into his abdomen and attached to his spin for a constant dose of the drug. However, if the trial fails, we will need to consider a more permanent type of treatment for Joshua that requires surgery as well. For now, we are working to get some weight on Joshua and keeping him comfortable with the spasticity. In spite of it all, Joshua keeps smiling, knowing that he is loved and giving so much love.

On a final note, we had more good news in the family recently. On March 18th Wendy and Jeffrey, my sister-in-law and brother, had their first child, a baby boy. Jared Gendel was born at 2:36 pm and weighed in at 5 lbs. 8 ozs. We are all very excited to have this new addition to our family. Joshua loves the idea of being a big cousin and colored a picture just for his buddy, baby cousin Jared.

We thank all of you for checking in regularly and keep praying for Stephanie, Mary, Patrick, Chris, Lydia, Nancy, and Mallory. Also please be good to one another as our country enters this difficult time. We will be adding pictures of the trip soon. Also a special hello to Angela from Canada!

Steven

Monday, February 24, 2003 9:14 PM CST

Sorry it has been so long in updating. As some of you know we have been busy. Let’s start out with Joshua. He is doing really well; spasticity is still a concern though. We started February with our Make-a-Wish trip to Disney World, or as Erica would say the Mickey’s House. We spent the weeks leading up to the trip getting Joshua psyched about all the stuff he would see and do. Let me tell you the Make-a-Wish people do an amazing job. A week before the trip they stopped by with gifts for Joshua, a HUGE Mickey Mouse that he would reach up and hug, a Tigger, and books. Combine these gifts with Disney music playing around the house and we are ready to go!!

However, Joshua likes to make things interesting and a few days before we are to leave his spasticity gets really, really, really bad. Bad enough that we thought we would not make the trip. A quick call to Dr. Katz and we started a new med, Dantrium, it seems to be doing the trick. At times Joshua is a bit stoned but it certainly helped us get to Disney. One last surprise before we left, our plane tickets arrive and inside the packet is spending money for our trip. Wow, what a shock to us but that means we get to spoil Joshua even more!!

I have to say this was one of the easiest trips we ever took. In fact, we where packed and ready to go a few days before February 1. The nice thing is Make-a-Wish took care of everything, from plane tickets, to a car service, a rental min-van in Orlando, tickets to the parks, spending money, breakfast and dinner, medical supplies, a bath chair, and Josh’s food all waiting for us in our villa. We can’t thank them enough for making the trip so easy and fun!

So we are off to Orlando, very excited to say the least. Joshua did great on the plane and when we arrived, the Make-a-Wish group has a greeter with a big “Welcome Joshua Gendel” sign. We stayed at the Give Kids the World Village, which Make-a-Wish contracts with. With the greeter (Lena) we go and get our luggage and head off to the rental car. No problem here and we are off to the village. We get to the Village and check in and head to Villa 110, it has a Gendel sign on the front. Upon exiting the van we say Josh’s nurse, Jackie. Jackie was nice enough to spend the entire time with us so we could all relax. Needless to say Joshua was THRILLED to see her. The villa is definitely set up for kids. All the doors are wide and it is easy to move about. Josh’s room and bathroom where larger than ours. He had the Jacuzzi tub, etc. Jackie said she had no problem sharing a room with Josh so they had a little party while we where down the hall. The staff had gifts waiting for Josh, another stuffed Mickey Mouse doll, this makes 4, candy, videos, and a stocked fridge with soda, juice, and milk. We spent the day relaxing and hanging out with Jackie. For dinner we had the food at the Village not great but not terrible either. Let me tell you about the village, it is incredible. They have a train you can drive, a tram system, nature walk, two pools, fishing, mini golf course, toys, games, a movie theater, 96 villas, it is incredible. You can even have a character tuck your child into bed.

Josh woke up early and was ready to go to Disney. Early for him is before 8 am so this was early since he was up at 6 am! We all get up go have breakfast at the Ice Cream Castle, where you can get ice cream all day! Then off to see Mickey. We head straight to the Magic Kingdom and before we get past Main St. we bump in Mickey Mouse and Daisy! They make a special stop because Joshua is a Make-a-Wish kid. We wore a special button that the Village gave us. They told us to wear it everywhere we went. Then Erica and Jackie head straight to Space Mountain while I go and feed Joshua. Let me tell you this; never feed your child under a tree with lots of birds. I will leave it at that. Erica and Jackie had a great time on the ride so now we are off to Buzz Lightyear ride. We all rode and Joshua loved it, he laughed and laughed, Jackie had him pushing the button, we could not believe how happy he was. Totally different from last year when every ride freaked him out. Now he wanted more rides. But it was off to see Mickey and friends in Toontown. Joshua was very excited to see Mickey at his house. Mickey wanted to go for a stroll with Josh. We laughed and smiled and enjoyed our time with Mickey. Next we went to see Pooh, Tigger, and Eeyore. Joshua was lucky enough to have a private showing with the characters. He loved it especially the kisses from the characters. Then Tigger pushed his wheelchair to the next room to see Minnie and Chip and Dale. While visiting with them we where discussing the summer we had and Erica started to cry as the waves of emotion overcame all the adults in the room soon Jackie, me and the staff where in tears. After we said goodbye Chip pushed us to the next room to meet Cinderella, Mary, and Perla. Now it was off to rides, Pooh, Peter Pan, Snow White, It’s a Small World, Haunted Mansion, Pirates of the Caribbean, Jungle Cruise, and Country Bear Jamboree. What a day! Joshua loved the rides. In fact, he even pouted when we got off because he wanted to go again! We promised him that we would. Now it was back to the Village to crash. We all rested and Erica and I went back to Epcot to grab some dinner at Canada. It was yummy and we enjoyed the Bahamas and Key West dances performed by our servers. All-in-all a busy and great first full day.

I will provide more about the Disney trip in the next update. As of today, Joshua is doing great, enjoys school, and came back from Disney very verbal. He is louder than ever and wants even more attention because of the amount he received on vacation. We thank all of you for checking in regularly and keep praying for Stephanie, Mary, Patrick, Chris, Lydia, Nancy, and Mallory. Check back with us in a couple of days for the rest of the update.

Steven

Thursday, January 23, 2003 at 06:20 AM (CST)

Hi everyone. Once again, a long overdue update. No news has been mostly good news. Joshua has been doing very well. We are thrilled to say that Joshua has adjusted well to his new nurse, Diane. He gave her a very hard time on their first day back to school after the holiday break. Thankfully, she showed up for work the next day. Josh is now chatting and flirting with her. Joshua is also adjusted to his Tuesday nurse, Patty, but gives her more of a hard time because he is not with her as much as he is with Diane. Joshua misses Jackie a whole lot too. He talked to her on the phone this past week and told all of his stories. He is very happy every time we talk about her.

School is going very well with Joshua enjoying an occasional lollipop while in speech therapy, tricycle rides and walking in a gait trainer in physical therapy, and swinging and drawing in occupational therapy. Joshua is learning a lot about winter and had “snow ball” fights at school with stuffed white socks. It was really funny to be hit, but letting go of his snowball was really hard.

Joshua has started going to Yaldeinu – a religious school type program for children with disabilities. He had fun being with familiar friends, singing songs, and doing crafts projects related to current holidays. Hippotherapy has also been fun, but the weather is currently too cold to visit Dakota (his horse). When it warms up, we’ll take Joshua back for his rides on Dakota. At home, Joshua talks more than ever. He loves counting, picking shapes, picking colors, coloring, and having therapy with Mommy and Daddy. We have lots of fun being silly as a family!

Our biggest news is that the Make A Wish Foundation has granted Joshua his wish. We will be leaving soon to visit Mickey Mouse at his house in Florida. They have amazing services and are accommodating all of Joshua’s special needs. We’ll be staying at the Give Kids the World Village, gktw.org, and have access to all the parks at Disney, Universal, and Sea World. Joshua is getting very excited and we all look forward to the fun away from home. We also get to have a nurse with us, and since Jackie is already in Florida, she will be joining us for the fun. We all can’t wait to see her soon.

Today’s news is that Joshua had a more invasive treatment for spasticity. He has had increasing spasticity over the past few weeks to the point of loosening the bolts on his home seating. He is at risk of breaking bones and hurting himself in other ways. Baclofen has been increased drastically and cannot go too much higher on the dose without creating side effects that will affect GI and sleep issues. We realize the options for treating spasticity effectively include Botox and the Baclofen pump. Joshua may very well be on the road to getting a Baclofen pump implanted but Dr. Katz, Steven, and I agree that we should try to wait as long as possible to before another major surgery for Joshua to get even healthier and to give more time since the events of the summer. Botox is the same stuff that women use for the surgery-free face lifts. It functions to deaden the nerve endings in the area of concern and can be very localized for optimal results in one specific place on the body. Today, Dr. Katz injected both of Joshua’s legs in about four or five places to get big results for his lower body. The results are noticeable in five to seven days and can last about three months. Depending on the results, we may find that this is an optimal non-surgical treatment for severe spasticity and will proceed with Botox in his arms and hands. Time will tell… For now we still have oral Valium, which is not ideal, for bad days.

Steven continues to get busier and busier in real estate. He is happy and we are excited about good things to come.

I’m enjoying more relaxed time here at home. I’ve been cooking more and doing some embroidery. These are really relaxing activities – FINALLY. My birthday earlier this month was wonderful. Just being at home with my guys were all gifts that I needed. I feel as though I have it all.

Please continue prayers for Joshua’s friends Mary who is waiting to schedule her next surgeries and Stefanie and Chris who are getting stronger since their surgeries.

Thank you for all the support you have given us and Josh’s friends. It makes a tremendous amount of difference in our lives. Joshua continues to be a very happy child who knows that he is loved. He also loves to tell people that he loves them. This is from Josh, “I love you!”

Erica

Tuesday, December 24, 2002 at 09:20 PM (CST)

Hello everyone. This is a very long overdue update. But, as they say…No news is good news. Joshua continues be doing very well. He’s actually amazing. Steven and I are amazed at his incredible progress at school, his ability to recuperate from colds, and the carry-over of activities from school to home to temple to activities with volunteers. Joshua was so sick for so long that his progress feels like a miracle.

Joshua loves going to school and has begun to be just as chatty at school as he is at home. He is truly comfortable there. Jackie, his nurse, helped make school as comfortable as it is for Joshua. Joshua’s teachers, classroom aides, and therapists all have become quite comfortable with Joshua and his medical needs. Bad days are still about once a week for Joshua where retching, spasticity, and seizures will be very bad. Those days, Jackie has come off the bus with Josh and said, “I’m going home for a martini tonight!” Good days…let’s just say that they’re really good. Joshua is amazing his teacher and therapists with his progress. His ability to make choices is becoming more consistent. Use of switches is becoming much more reliable with some situations requiring little, if any, cuing. Joshua has used a tricycle in PT and is using a gait trainer/walker and starting to take and initiate more steps, without as much crying as had been. Crumpling paper, playing in different textured objects, and coloring. With minimal support, Josh can color mostly in the lines. Joshua’s also gotten stronger and is initiating rolling over and will be doing it consistently soon. He can stand for longer periods of time with proper supports and pays attention to activities at school and home. And, Joshua has had his first lollipop and liked it a whole lot.

Hanukkah was lots of fun for Josh. He loves to light the menorah and sing the blessings. He helped unwrap gifts and especially likes his new switches and speech module (augmentative technology equipment) so that he can tell us what he wants. Joshua likes to go to temple and wish everyone he sees “Shabbat Shalom”.

School is on vacation until January 2nd. That also means that Jackie goes to Florida until April 1st. We can’t wait until she is back with us and miss her a whole lot already. We look forward to having Diane take Josh to school for the next few months. Last Friday, Joshua’s class had a holiday show. It was the Charlie Brown Christmas. Joshua was Snoopy. For Joshua’s first holiday show, we think he did very well. He cried when the parents clapped and yelled “Yay” but was able to compose himself for his part. He also had a seizure at the end of the show and cried when Santa arrived. All in all, we are really happy with how he did. We even video taped it and are happy to show it to anyone who is interested. :-) I’m very proud of Josh.

We will be meeting representatives from Make A Wish this coming weekend. The social worker from the neurology practice referred Joshua for a wish to our incredible surprise. We are hoping for a trip to Mickey Mouse’s house in Florida. Other options for Joshua were limited due to Joshua’s age, ability to travel out of the time zone or to hot places, and vision impairment meaning that he does not watch TV or know about related celebrities. We’ll update after the meeting.

Joshua has enjoyed seeing his cousins and Aunts and Uncles in the past month and is looking forward to seeing some again this week as a visit from the Oklahoma crew is planned.

Steven is in full swing as a realtor. The flexible hours are something for us to get used to. So far, it’s working out well. Steven’s website can be reached at www.coldwellbankermoves.com/steven.gendel.

Our extended families are rather stable. Thanks so much for your support and sympathy with the loss of my grandmother.

Thank you always for the unending support for Joshua and our family. It has been essential to our getting this far. Joshua has shown us that there is always hope and miracles can happen. Joshua knows that many love him.

Please continue your thoughts and prayers for Joshua’s friends Mary and Stefanie.

We extend our warmest wishes to everyone for Happy Holidays and a Happy New Year.

Erica

Tuesday, November 19, 2002 at 09:52 AM (CST)

Hi everyone.

First Joshua. Joshua continues to be doing quite well. He loves school and is learning so much. Most importantly is that Joshua had is central line removed last Friday and does not need any more TPN for nutrition. His stomach is functioning well and continues to make progress with his feedings everyday. Joshua has gained even more weight and is now 34 pounds!! Jackie, Joshua’s nurse, saw me holding him this morning and said, “Soon he’ll be holding you!” This is all good news. We are still amazed with how far Joshua has come in such a short amount of time. It is hard to believe that Joshua was so sick this past summer. I do not even think it is possible to express my full feelings of gratitude for all the wonderful people who have helped Joshua and us.

Last week, my Grandma Rae, my dad's mother, fell and hurt her arm and leg. She is doing alright at this point. However, Pop-pop Bill, my dad's father, fell and broke his knee cap this weekend. He is in some pain but doing alright. We're all trying to get them to stay put at home for a while.

Today’s news is that my grandmother, Ruth Hendler, died this morning. She was 90 years old and had become very sick in the past few weeks. Grandma Ruth was my mother’s mother. We are all grateful that her suffering is over and will remember the moments that made my grandmother’s life unique. The funeral will be Thursday morning.

Thank you for your continued support for Joshua, Steven and me, and our whole family. Please, continue to pray for Mary as she recovers from her recent surgery to remove grids and for Stefanie as she heals at home.

More updates to come…

Erica

Thursday, November 07, 2002 at 01:39 PM (CST)

Hello all. This is the second attempt to update after losing more than half an entry. Here we go...

Sorry it’s been so long since updating. In this case, no news is good news.

The biggest news is that Joshua was featured in an article in The Star Ledger, the biggest newspaper in NJ, just this past Saturday. The article focused on using this incredible web service. CaringBridge has been so valuable by keeping us connected with support from many family and friends, and even strangers. Here’s the link for the article, there’s no picture attached but it was a cute one of the three of us:
http://nj.com/living/ledger/index.ssf?/base/living-0/103623208810390.xml.
Angela Stewart did an amazing job on the article and we thank her for working on the story.

Josh is doing incredibly well with school. He loves going and has gotten completely comfortable there. Our little chatty boy talks to everyone and has lots of stories to tell. We hope someday to understand them all. Joshua has been absorbing and learning so much just in the short time he has been going to school. He continues to make progress in all therapies and no longer cries with any of the therapists. “To infinity and beyond..." Jackie, his nurse, gets off the van with Joshua and tells us all the great things that Joshua has done with incredible pride. We are so grateful to have such a loving and caring person going with Joshua to school. I particularly love the artwork Joshua brings home from school. Call me crazy but I get choked up with each one. Is this a normal response to your preschooler’s accomplishments or a response to a child achieving goals seemingly unattainable just a few, very sick, months ago? Anyway, I couldn’t be happier and am glowing with pride.

Halloween was fun for Joshua. He spent the month of October in school preparing for Halloween with themes of pumpkins, fall colors, scarecrows, etc. Just the other day, after playing with the guts of a pumpkin, Joshua said the word “umpkin”. First letter consonants are hard, but we’ll take it for ‘pumpkin’ nonetheless. Joshua dressed up for Halloween as a Neurosurgeon. He was too cute dressed in scrubs. We happened to have doctor appointments that day and we took some pictures of Josh with Dr. Fried, who loved the costume…and the look of Josh’s head! We also visited Mary in the EMU for her epilepsy monitoring with grids/strips. She was the cutest little pumpkin on the vine that you could ever see. We also saw Stefanie who was visiting the EMU after her fist post surgery follow up with the neurosurgeon. She was a very happy witch. It was great to see these wonderful friends. The next big visit needs to be out of the hospital.

Joshua’s medical status is quite good. Joshua is very healthy these days. He has 5 to 10 seizures daily, and they are short ones at that. Dr. Katz, our favorite seersucker-wearing neurologist, is pleased with his overall health. We continue to tweak Josh’s medications for optimal spasticity control and seizure control. They go hand-in-hand.

We received the results of the sleep study. Joshua is doing better this year than last year! The results are very little apnea with no treatment recommendations. We are amazed. We’ll need to follow up with the doctor in another year.

Joshua’s stomach is working quite well. Actually, his stomach is functioning better than ever. He is tolerating his feeds with one bad feeding day a week with copious retching and slow motility. Retching continues to be a daily occurrence with 3 to 5 retches. Joshua is almost up to full feeds and will be there very soon. We hope to be rid of the central line within the month. We can’t wait to lose the superfluous hardware and infection risk. Joshua will see Dr. Kogan, the gastroenterologist, on Friday so that we can make some decisions.

Grandparents are doing well for the most part. They love seeing Joshua so healthy. Joshua’s Great-grandma Ruth fell down last week and broke a hip. She is back home now recuperating, but it has been a rough time for Grandma Marilyn. Also, Great-pop-pop Bill spent a few days at the hospital a couple weeks ago, but he is home doing much better as well.

Steven has decided to pursue employment in Real Estate. He has signed up with Coldwell Banker in Caldwell and is just starting to learn the ropes. He looks forward to this new adventure with great excitement.

I am enjoying the time that Joshua is in school in cleaning up many unfinished projects, catching up on lots of paperwork, and spending some time with my husband. I will also update my resume. I must keep in mind that Joshua still does not have a nurse to go to school with him for January through March – Jackie goes to Florida - and may need to be available for all or part of those months. Let’s see what happens.

Please continue prayers for Stefanie as she heals at home and for Mary as the doctors work to find the focus of her epilepsy.

The prayers for Joshua and unending support have sustained us and continue to sustain our family. Thank you. Thank you. Thank you.

Erica

Thursday, November 07, 2002 at 01:39 PM (CST)

Hello all. This is the second attempt to update after losing more than half an entry. Here we go...

Sorry it’s been so long since updating. In this case, no news is good news.

The biggest news is that Joshua was featured in an article in The Star Ledger, the biggest newspaper in NJ, just this past Saturday. The article focused on using this incredible web service. CaringBridge has been so valuable by keeping us connected with support from many family and friends, and even strangers. Here’s the link for the article, there’s no picture attached but it was a cute one of the three of us: http://nj.com/living/ledger/index.ssf?/base/living-0/103623208810390.xml.
Angela Stewart did an amazing job on the article and we thank her for working on the story.

Josh is doing incredibly well with school. He loves going and has gotten completely comfortable there. Our little chatty boy talks to everyone and has lots of stories to tell. We hope someday to understand them all. Joshua has been absorbing and learning so much just in the short time he has been going to school. He continues to make progress in all therapies and no longer cries with any of the therapists. “To infinity and beyond..." Jackie, his nurse, gets off the van with Joshua and tells us all the great things that Joshua has done with incredible pride. We are so grateful to have such a loving and caring person going with Joshua to school. I particularly love the artwork Joshua brings home from school. Call me crazy but I get choked up with each one. Is this a normal response to your preschooler’s accomplishments or a response to a child achieving goals seemingly unattainable just a few, very sick, months ago? Anyway, I couldn’t be happier and am glowing with pride.

Halloween was fun for Joshua. He spent the month of October in school preparing for Halloween with themes of pumpkins, fall colors, scarecrows, etc. Just the other day, after playing with the guts of a pumpkin, Joshua said the word “umpkin”. First letter consonants are hard, but we’ll take it for ‘pumpkin’ nonetheless. Joshua dressed up for Halloween as a Neurosurgeon. He was too cute dressed in scrubs. We happened to have doctor appointments that day and we took some pictures of Josh with Dr. Fried, who loved the costume…and the look of Josh’s head! We also visited Mary in the EMU for her epilepsy monitoring with grids/strips. She was the cutest little pumpkin on the vine that you could ever see. We also saw Stefanie who was visiting the EMU after her fist post surgery follow up with the neurosurgeon. She was a very happy witch. It was great to see these wonderful friends. The next big visit needs to be out of the hospital.

Joshua’s medical status is quite good. Joshua is very healthy these days. He has 5 to 10 seizures daily, and they are short ones at that. Dr. Katz, our favorite seersucker-wearing neurologist, is pleased with his overall health. We continue to tweak Josh’s medications for optimal spasticity control and seizure control. They go hand-in-hand.

We received the results of the sleep study. Joshua is doing better this year than last year! The results are very little apnea with no treatment recommendations. We are amazed. We’ll need to follow up with the doctor in another year.

Joshua’s stomach is working quite well. Actually, his stomach is functioning better than ever. He is tolerating his feeds with one bad feeding day a week with copious retching and slow motility. Retching continues to be a daily occurrence with 3 to 5 retches. Joshua is almost up to full feeds and will be there very soon. We hope to be rid of the central line within the month. We can’t wait to lose the superfluous hardware and infection risk. Joshua will see Dr. Kogan, the gastroenterologist, on Friday so that we can make some decisions.

Grandparents are doing well for the most part. They love seeing Joshua so healthy. Joshua’s Great-grandma Ruth fell down last week and broke a hip. She is back home now recuperating, but it has been a rough time for Grandma Marilyn. Also, Great-pop-pop Bill spent a few days at the hospital a couple weeks ago, but he is home doing much better as well.

Steven has decided to pursue employment in Real Estate. He has signed up with Coldwell Banker in Caldwell and is just starting to learn the ropes. He looks forward to this new adventure with great excitement.

I am enjoying the time that Joshua is in school in cleaning up many unfinished projects, catching up on lots of paperwork, and spending some time with my husband. I will also update my resume. I must keep in mind that Joshua still does not have a nurse to go to school with him for January through March – Jackie goes to Florida - and may need to be available for all or part of those months. Let’s see what happens.

Please continue prayers for Stefanie as she heals at home and for Mary as the doctors work to find the focus of her epilepsy.

The prayers for Joshua and unending support have sustained us and continue to sustain our family. Thank you. Thank you. Thank you.

Erica

Thursday, October 24, 2002 at 03:31 PM (CDT)

Hello all. Joshua is doing incredibly well at this point. He loves school!! He is still achieving many milestones. Josh’s therapists are thrilled with him and are seeing great progress and potential. Steven and I are especially amazed at his progress in Speech Therapy. Josh is using multiple switches to use a computer and toys. He is finding alternate ways to communicate and still is improving verbally. Joshua is communicating with us and with lots of other people in his life. He is also exerting his control by being more manipulative with stubborn behaviors and his version of tantrums. Thankfully, we have Jackie, his nurse, who is phenomenal with Josh. She pushes him very hard and can get him to do so much. She loves to come home from school to tell us how smart Joshua is. Josh is especially smart on Mondays. We like Mondays.

Health update: “Seizure” type activity is at a minimum of under 10 a day. We never thought we would be at this point. Josh’s stomach is working much more and is almost at full volume. Feeding has actually become better than it had been in many ways, especially daytime feeds. He continues to retch numerous times daily with some days worse than others. People at school are getting used to Josh’s retching and are quite helpful to Josh’s nurse, Jackie, in managing the episodes. Josh’s TPN has been decreased dramatically which is sure sign of getting rid of the central line altogether. The central line site looks good, and we are managing to keep Josh’s dressing on the site much more efficiently these days. Josh’s blood tests are coming back each week better than the last with hemoglobin above 11 for the first time since early this year and liver functions much lower than the last couple months. Apnea is in the midst of being addressed: Joshua had a sleep study a couple weeks ago that went well and we will be finding out the results this Friday. Josh’s spasticity is controlled far more than ever. He’s even got new AFOs (ankle foot orthotics, aka braces), and he is tolerant enough to wear for hours at a time.

We were interviewed two weeks ago by the Newark Star Ledger for an article about using this incredible web service – Caringbridge. The reporter and photographer were with us for about two hours and Josh had lots of fun flirting with them. We are anxiously awaiting printing of the article and will post when we know that it will be published.

Good news. Grandma Ellen finished radiation this week and couldn’t be happier. She is doing well and hasn’t slowed a bit. Pop-pop Paul had an angiogram and angioplasty with stent placement two weeks ago. He is doing well and has very good results from his cardiologist.

Steven continues to look for a job with great frustration. He is diligently exploring all options. I have finally begun enjoying my time during the day while Josh is in school. Many projects are getting done. There is even a bit of time for relaxation. Thanks everyone for your support to help get us to this point.

We ask for continued prayers for friends who are wrestling epilepsy. Stefanie had resection this past week and went home from the Hotel Hackensack today after a 69 day visit. We wish her speedy healing and much strength. Little Miss Mary is at the Hotel as we speak with strips for monitoring. We wish her family much strength during the days ahead.

Finally, check out our pictures for some latest looks of our rather chubby boy.

Thanks again to you all for your continuous support and prayers.

Erica

Monday, October 07, 2002 at 09:23 PM (CDT)

Hello all, sorry it has been so long in updating. We have lots of good news to share. First off, Joshua started school last week. He loves it. It is a full day program and he leaves on the bus at 8:15 am and returns at 3:00 pm. He is surpassing many milestones almost daily. We are seeing him communicate more and absorbing more information faster. His brain seems like a sponge. In school they do circle time, sing songs, say the pledge of allegiance, discuss the weather, use swings outside, have arts and crafts, etc. Joshua brought home his first arts and crafts project; we’re looking for a suitable frame. Joshua also has all of his therapies. His speech therapist is very excited with his progress and we know that he understands “yes” and ‘no” as well as several letters in the alphabet including the letters J and G. Needless to say Erica and I are thrilled. We’re very comfortable with his new school and only spent a day and a half there with him until feeling comfortable enough to let him come and go on the bus and without following or visiting the school midday.

Of course, getting Joshua to school last week was not without its challenges. We have and are still having some issues with the school district that we hope to work out soon. It seems that we have had to jump through a lot of hoops just to get him to school when he was healthy enough several weeks ago to start. After many heated calls we did get Joshua to school and are happy about that. Bottom line though is that Joshua is truly starting to shine and everyone can tell.

Last week, Joshua saw Dr. Katz and he is pleased with Joshua’s progress. No changes in medications right now. On Thursday, we spent one night at the hospital for an overnight sleep study. We spent the night with electrodes hooked up to Joshua’s head and body to monitor him for sleep apnea. This is a follow up study from last year. The amazing was that Joshua felt well enough to go to school for the whole day on Friday, we thought he would be exhausted. We hope to get results and recommendations for treatment in a month’s time. Josh’s stomach is improving tremendously. He’s more than half way to being able to manage full feeds. We hope to be rid of his central line in about a month’s time.

Good news on the home front is that I passed my school test for real estate and will be taking the state licensure exam tomorrow. Also, we celebrated Grandma Pearl’s 89th birthday this past Sunday with brunch at her house and the whole family attended. On Friday night we spent Shabbat at our friend’s the Grossbaum’s for a wonderful meal and a great time. It was fun to be out for Shabbat dinner as a family.

We were contacted last week by CaringBridge that they were looking for a NJ website user for an article for the Star Ledger. Interestingly enough, they chose us. So, The Newark Star-Ledger is coming to our house tomorrow to do a feature story on us and our use of the CaringBridge web site. We’ll be sure to let them know how valuable this is to our now very extended family of loved ones. Look for the article and picture soon.

Finally, my father is going for an angiogram tomorrow to see how his heart looks. Of course, we pray that there are no problems. My mom’s broken nose is almost healed and she only has one more week of radiation. All the great-grandparents are doing fine too. We ask that you continue to pray for Stefanie who still has grids in place since August and Mary who entered HUMC and had grids placed last Monday. Thanks again to all of you for your prayers and look for the Gendel feature article soon.

Steven

Sunday, September 29, 2002 at 03:24 PM (CDT)

Hey everyone. We are deep into getting Joshua ready for school this week. Yep. Joshua is going to school starting on Tuesday with a class trip to a farm for pumpkin picking, a hayride, and a petting zoo and will go to school on Wednesday on the bus for the first time. We are really excited for Josh to finally get to school and for me to finally get a daily break. BUT…I can’t even tell you all how anxious I am. As I said in the last update, I will definitely be following the bus for at least the first day of school and I will probably be visiting the school a lot at first.

With all of the incredible gains that Joshua is making with therapies and cognitively, we are confident that Joshua is ready for school and will be just fine. We also visited the school and met the other children in the class as well as the teacher. Joshua will be welcomed with open arms. Further, we know that his nurse who will be with him every day is phenomenal. She knows Josh’s needs already and he knows what to expect from her. They are in love with each other. It’s beautiful. We are incredibly fortunate to have her and are greatly reassured by her.

It has been an eventful week and a half since our last update. We continued to have some concern about his central line that it was moving both out and in. A big infection risk! Unfortunately, Josh’s surgeon was on vacation, the covering surgeon was not on our list of choices for various reasons, and the surgeon who we asked to see Josh could only see him in the ER. First, we were to see her late last Friday night when she called for us to meet her. We never received the call but were waiting with the just-in-case bags packed. Saturday morning she called and told us she was in surgery all night but could see us right away in the ER. Quick shower! Ten minutes later, she called back and scheduled to meet us on Sunday morning. So, we made it to music on Saturday and met cousins Debbie and Brad for dinner; but our plans for Sunday were cancelled. We waited until Sunday afternoon to meet the doctor because she had been in surgery all night once again. Good news, Joshua’s central line is functioning well and in position. She showed us a different way to dress the site and sent us on our way. Thankfully, we did not have to stay or need another surgery for a new central line as we all expected.

We’ve visited our favorite seersucker-wearing (only between Memorial Day and Labor Day) neurologist, Dr. Katz, and have tweaked some of Joshua’s medications so that we can help him to not need to be so tired in the morning when he’ll be at school. Josh had a cold during the last week and a half which did not help medication adjustment or seizure control. Yep, seizures continue to some extent, but we can live with this. As far as the cold goes, Steven had it and I’ve got it. Grandma Marilyn even got it. I’m sure it is the first of many colds that he will get at school and that we will share as a family.

Josh’s stomach is handling more food each week. He is more than half way to his needed daily intake of fluid and food. He has also been able to discontinue the lipids that have been given to him through his central line. The lipids are the stuff that made him fat. Josh is quite fat. He has belly overhang, a couple chins, bigger cheeks, real thighs, and even has dimples in his elbows. We have begged Dr. Kogan to slow down on the weight gain until Joshua can manage the weight a bit better. He’s got to be about 31 pounds at this point. He’ll be getting rid of the central line in no time. Hopefully, it will just be another couple months, if that.

We met with the doctor for Joshua’s sleep study last week. Josh will have to be admitted for the sleep study. We do not have a date but are hoping to have it completed in the month of October some time. Once the kind and extent of apnea is found a treatment can be recommended. We’re praying for the best news possible.

Our family is stable right now. Grandma Ellen is well on her way to finishing radiation therapy and is doing well aside from feeling tired late in the day. The end date is in sight.

We thank everyone for the ongoing prayers, love, support, calls, emails, web posts, mail, etc. Josh is doing far better with your help.

Please continue prayers for Stefanie as she continues to stay in the hospital with grids for epilepsy monitoring and awaiting much needed seizures to indicate the proper surgery, and continue prayers for Mary as she is admitted tomorrow for surgery for grid placement for epilepsy monitoring and ultimate epilepsy surgery.

Erica

Tuesday, September 17, 2002 at 02:58 PM (CDT)

Hello everyone. It’s been a largely uneventful time since we last posted an update. Joshua visited only one doctor. Dr. Valda, the surgeon, checked out Josh’s Hickman (central line) for placement just before Rosh Hashanah began. He said that we are doing the best that we can, and there’s no better solution for keeping the line in or the dressing on. Josh will reject the line when he will. A suture to keep it in place will not help because once the suture breaks free, the opening will then be enlarged and defeat the primary purpose of the suture.

Just before Rosh Hashanah began, Steven received a call from his father stating that his mother had an auto accident and was going to the hospital by ambulance. His mother has broken her nose from impact on the steering wheel and is doing fine at this point. She went ahead and had a crowd for Rosh Hashanah on Saturday with lots of help from the family. It worked out very well in spite of the no-fun nose. Josh was happy to have the outing to Grandma Ellen and Pop-pop Paul’s house. Joshua even heard the shofar being blown by Uncle Jeffrey while at Grandma’s house. He definitely enjoyed.

We were able to go to temple together on Sunday with Grandma Marilyn and Pop Bobby for part of the service. Josh sat through a good portion of the service and once again heard the shofar with big smiles. We enjoyed a small family meal afterwards at Grandma Marilyn and Pop Bobby’s house. Josh was able to see all his Great grandparents for the holiday.

Joshua is getting more familiar with his new nurse, Jackie, who will be going to school with him on October 1. She is spending lots of time with us at home and is getting very used to Josh’s medical issues. Jackie is definitely a keeper. She’s fabulous. The love that they share for each other already is more than apparent. Steven and I feel very comfortable leaving Joshua in Jackie’s care to go to school. Jackie stayed with Joshua yesterday so that Steven and I could go to Yom Kippur services together. It was nice to be able to go out together and know that Joshua was well cared for. We all went to Grandma Marilyn and Pop Bobby’s for break fast, end of holiday fast.

Joshua was casted for new Orthotics this past week and will have new AFOs in a couple weeks. Joshua will be standing with much greater support very soon. He continues to get stronger and stronger. Josh’s head control continues to improve. The GI issues are still around, but he is tolerating more food almost daily. He is not taking enough formula to sustain himself, so he continues to be on TPN.

Joshua is having increased “seizure” type episodes and much worse spasticity. We are awaiting a call from our great seersucker-wearing neurologist, Dr. Katz, to discuss further treatment. Car rides are worse than they had been and will be requiring us to have Valium at the ready and, once again, avoid the car. Sleep is more interrupted again due to the spasticity.

We tried some oxygen for Joshua last week to see if it impacted his sleep apnea issues. Joshua had a nuclear meltdown for over an hour after wearing the nasal canula for only 5 minutes. It was awful. His oxygen desaturations have not worsened and are a tad better. We will continue to address this issue with his Pulmonologist and with a sleep study.

Meanwhile, we work to get Joshua healthy and stronger. He has already caught a cold and has not even made it to school yet. Colds happen. Steven’s already caught it. I’m sure to follow. MEDEK has begun again, so Joshua will surely get stronger soon.

Joshua continues to be a very happy child. He looks more like a little boy and has become manipulative like one as well. He loves to play and has even asked to be tickled! We love it. Josh is very loved and gives so much love to everyone. The therapists and instructor who visit all feel it and comment on it. He is going to do well in school, we are sure of it. October 1 is coming soon. I can’t wait and am quite nervous. I’ll be the nervous mother in the gray minivan following the school bus for the first month of school.

Joshua still has many hurdles ahead. We hope that these holidays have brought us the renewal of energy and fortitude to meet the challenges. Above all, Joshua knows that he is loved. Please continue to pray for Joshua, for us, and our families as we continue on our journeys each day.

Please also keep in your prayers and thoughts Joshua’s friends Mary and Stefanie as they strive for seizure control and Lydia who looks for comfort with her family.

Erica

Friday, September 06, 2002 at 10:16 AM (CDT)

Hello everyone. It has been a week of much healing for Joshua. He is healing and get stronger faster than we had thought possible. Josh’s head control is improving. He is not content to just sit in his chair or on a lap without trying to hold his head up and off whatever is behind him, all while keeping in midline. This may seem trivial, but is a huge sign that he is getting stronger and surpassing some of his abilities that he had when at his best. Josh is also following more instructions to shut off one toy or to work another. He is making choices by picking which books he wants to read or toys to play with. Josh is also discerning colors; he is consistently drawn to the color blue. Josh is no longer content to just sit or lay down. He is frustrated easily and wants to be doing things. Exhausting for us but very exciting. All of these improvements are due to his healing and to his finally being fully nourished with the help of TPN. Josh is easily 30 pounds at this point. Steven and I are doing lots of stretching of our own backs so that we can continue to care for Josh.

Joshua visited Dr. Fried yesterday. All sutures have finally been removed and the last scabs are coming off his head. Although it was difficult for Dr. Fried to believe, Josh is really NOT leaking anything from his head. Nothing!! Dr. Fried doesn’t want to see Josh for three months with a CT scan. He might just miss seeing Josh. :-)

Joshua also visited with Dr. Katz (although it is past seersucker wearing season, yellow suspenders work just as well). We are addressing Josh’s spasticity, sleep issues, and GI problems. Spasticity is a huge issue because it impacts not only his ability to do things during the daytime, but also his sleeping at night. It also affects his central line because the sweat from his spasticity causes the dressing on the line to not stick. Joshua will go for casting for new ankle foot orthotics (AFOs) next week to help keep heel cords stretched and to help with standing. Back to sleep. Josh is having much sleep interruption because of the spasticity waking him up and also because of apnea. The apnea is something he had when he first came home from the NICU. Last year’s sleep study showed that he had severe obstructive sleep apnea that necessitated a Tonsillectomy and Adnoidectomy. Josh will need to have another sleep study to determine if this is still obstructive sleep apnea or central sleep apnea and what the treatment options are for both. Dr. Lee will need to be involved in that determination as well as a team meeting of all Josh’s doctors. Oxygen may be something to try in the interim.

Joshua also saw Dr. Kogan while visiting the other doctors. Steven and I just love that these doctors are willing to have joint appointments and obviously talk about Joshua with each other even when we are not visiting. The team approach is priceless. Back to Dr. Kogan, aka Debbie. She is very frustrated with Joshua as his liver levels continue to be elevated, retching is as bad as ever, and motility is terrible. A good thing is that poop is finally improving some. We will need to get Josh off TPN soon to try to save his liver from potentially permanent damage. Without Josh’s stomach working, though, it is impossible to do. The plan is to decrease the TPN hours and amount in the meantime. Retching and motility issues could be related to some of the medications he is getting for spasticity. Quite the conundrum for Josh and the doctors. He will start back on Erythromycin in very small doses to help with motility. Let’s see if it works. I will continue to talk to Debbie about the options of a G-J tube. More bloodwork today will hopefully be better reports.

Today, we may see the surgeon to find ways to secure his central line. Josh’s body is trying to push it out, but he still needs the line for a bit longer. We’ll see what happens.

We are looking forward to being with our families for Rosh Hashanah this year. Last year was spent in the PICU. Josh’s first outings, other than to the doctors’ offices, will be this weekend to his grandparents’ homes.

I am looking for some renewal with this new year: Renewal of health and happiness for Joshua; renewal of my physical energy and emotional energy to handle the challenges that will come our way; and renewal of our family to be stable at home and, ultimately, at peace.

Please, continue to pray for Joshua as he continues to have many hurdles ahead. The support of so many family, friends, and even strangers continue to sustain us. Thank you.

We also ask for prayers for Josh’s friends Mary, Stefanie, and Lydia as they face many challenges ahead.

L’shana Tova

Erica

Wednesday, August 28, 2002 at 05:42 PM (CDT)

Hi everyone sorry it has been so long updating the page. We are very happy to be home!

Last week was somewhat crazy trying to get Joshua back into routine at home. We are hoping for some boring times and they are happening albeit slowly. Last Thursday Joshua went to visit Dr. Katz and Mazola at HUMC because he woke up leaking from his head, again. Turns out it was nothing much so they removed a few stitches and sent him home, phew. We packed to stay overnight but it did not happen.

Other than that little scare we tried to have a relaxing weekend. Joshua saw Grandma Ellen, Pop-pop Paul, on Saturday afternoon and Grandma Marilyn and Pop Bobby Saturday evening. Also, I got a break on Saturday when I went to the Catskills to have dinner with friends from college.

Sunday was take it easy day. We took Joshua on a long walk through the neighborhood, slept, relaxed, etc., a nice boring weekend.

On Monday, Erica spent the day at the beach with her Mom. They enjoyed another day in the sun. They also went out for a wonderful dinner and Erica really enjoyed herself.

Other news form the home office in Caldwell, NJ....it looks like we have found a nurse to go to school with Josh. We met her on Saturday and she spent the past 12 years taking another boy to school. Her name is Jackie and we felt very comfortable with her. She will be spending time with us overthe next few weeks as we get Joshua ready for school. We are also starting to feed Joshua with 1/2 strength formula. We need to get his stomach working again as his central line is trying to come out and we are doing are best to keep it anchored to his body.

Yesterday Joshua visited the docotrs again, Katz, Mazola, and Slavin (Infectious Diseases) and they said he looks great! Dr. Mazola removed some more sutures from his head and all of them from his back and side. In a few weeks she will remove the rest. They all said his head looks much better and the infection is clearing up. We also saw Dr. Harlow and he is pleased with Joshua's progress. He has been cleared for all therapies except hippotherapy.

Anyway our days/nights are crazy and we are happy to have some nursing hours during the day. We are looking forward to getting back into a complete routine and we are sure things will change again when Joshua starts school. We will wait until school has started a few weeks before we send him.

That is all for now, we appreciate everyone thoughts and prayers. We are looking forward to more boring, routine (and hopefully somewhat less crazy) days ahead.

P.S. We saw Stefanie Morrison in the hospital and she is doing well with the grids. We ask that you keep praying for her, as well as, Mary, Lydia, Mallory, Evelyn, and Jenna.

Wednesday, August 21, 2002 at 01:08 PM (CDT)

Greetings from home!! We are all together enjoying being out of the hospital. Joshua continues to look better and better. His head is dry and his stomach is not as bad as it had been in the hospital. No fever, continued retching, and a goal to start a bit of Pedialyte sometime today. Josh has even gained more weight; he’s now over 29 pounds. My back will never be the same. Our family and the doctors agree that this discharge will stick.

The plan from here:

Josh will visit the new neurosurgeon to the hospital, Dr. Mazola, next week while Dr. Fried is on a much needed vacation, from us. She will decide whether Josh can have any sutures removed at that time. Josh has sutures in two places on his head, two sets on his side, and on his lower back. Josh’s body looks like a roadmap; we know it will fade with time once the final sutures are removed.

Another appointment will be with the pediatrician, Dr. Harlow, next week to follow-up with general health issues and prepare for the things needed to start school in September.

A big appointment will be with our favorite, seersucker wearing, neurologist, Dr. Katz. We will need to address the ongoing issues of movement disorders/spaciticity management and epilepsy management. In doing so, Josh’s sleep will be addressed because some of his current medications cause drowsiness, and naps usually occur in the morning for one to two hours. This is a bit of a priority to be addressed for Josh to attend school. Josh will also need to have new ankle-foot Orthotics (AFOs) in the next month or so. AFOs will be ordered once Josh reaches a plateau with his weight gain. Getting ready for school is a main goal with all of the above involved.

I will talk to infectious diseases this week to find out the results of the swabs for MRSA that were done prior to discharge yesterday. The swabs, from under the arms, groin, under the fingernails, and his nose, are to determine if the infection is still hanging out in the often colonizing areas of the body (ie warm, moist areas). After 9 or 10 weeks on Vancomycin, it had better be gone.

Finally, GI issues will be ongoing with Dr. Kogan. She is on vacation for this week, but we’ll probably see her next week as well. I am often on the phone with her throughout the week as well. Josh has FINALLY finished Vancomycin for the MRSA, so we are hoping that his stomach will start to handle food very soon. Josh is still taking an antibiotic, Rocephin, until the 8/26 for the second infection he had in his head from this last hospital visit. Rocephin can also create stomach issues as a side effect. But, Josh also has starvation diarrhea from not having anything go through his gut. Josh’s tummy is not in good shape, so it will be a while before he is able to handle much in the way of food. Josh continues to have TPN through a central line for all of his nutritional needs, but it cannot be a permanent solution. Liver problems can be a side effect and Josh already has elevated liver levels. We’d all like to see him able to get rid of the central line.

Thanks to so many people, whom we cannot even begin to name here, for sustaining us through what has been the most challenging time of our life. The prayers, thoughts, love, meals, cards, emails, web posts, web hits, visits, calls, etc. have contributed to our making it home for what will hopefully be our last visit to the “Hotel Hackensack” for a very long time. We will continue to update on Josh through his healing and through Josh starting school. As things change, we’ll be sure to share the news.

Please continue to pray for Josh’s friends Mary, Stefanie, and Lydia as they meet the challenges of epilepsy. All three have websites that can be reached through Mary’s site.

Erica

Monday, August 19, 2002 at 08:26 PM (CDT)

A quick update this time as I am very tired.

Finally some good news. Joshua had a very good day today and will be coming home tomorrow (barring any unforseen events.) Now the goals are short term, rest up, re-start therapies, and get Joshua ready for school.

We are really excited to be home as a family and to enjoy some boring time together.

Thanks again to all of you for your thoughts and prayers and we will continue to update the site frequently.

Steven

Monday, August 19, 2002 at 08:22 PM (CDT)

Finally some good news. Joshua had a very good day today and will be coming home tomorrow (barring any unforseen events.) Now the goals are short term, rest up, re-start therapies, and get Joshua ready for school.

We are really excited to be home as a family and to enjoy some boring time together.

Thanks again to all of you for your thoughts and prayers.

Steven

Saturday, August 17, 2002 at 02:10 PM (CDT)

Hi everyone. Sorry about not updating earlier. I just didn't have the energy yesterday.

Joshua's surgery went very well. This was probably the best Joshua has looked after a surgery. He was very comfortable and smiling just a short time after surgery ended. The day started early: 3am blood draw for type and cross, 5am CT scan, 6am meds, 7:15am transport to OR, 7:45am start surgery. Thankfully, I managed to sneak in the fastest shower on record at 6:30am. Pop Bobby arrived at 7am to lend support - Thank you, Pop! At 8:50am I was talking to Dr. Fried after completion of the VP shunt placement and the lumbar shunt removal. The rest of the day was spent napping and snuggling with Mommy, Daddy, and Grandma Marilyn. He went to bed a little bit early and slept well until his 4am CT scan. He went back to sleep at 5am or so and slept until 10:30am. Josh even took another nap this morning.

His healing from the latest infection is progressing, so we may have just another 10 days on the newest antibiotic. The Vancomycin may be discontinued as early as Sunday or Monday now that his shunt is placed and there is no more anyting leaking out of Josh's head or body. Finally, the leakage has stopped. Since May 1st, Joshua has had some type of fluid leaking from his body. August 16th is the day it finally ended.

Things are certainly improving for Joshua. We, and many people around us, feel good that this is the final road to getting home for long time. Dr. Fried (neurosurgeon) and Dr. Piwoz (infectious diseases)are very happy with the way Josh is looking. They are both excited to see that things are finally improving. We want to go home and eat together at the same table, play with Josh's toys at home, prepare for school (even if his first day may be delayed a few weeks), and finish healing.

Discharge from the hospital could be sometime this coming week depending on how Joshua progresses with his healing. We are not sure if he will be transferred to general pediatrics or will go home from the PICU. Either one is okay. For now, we are still comfortable in the PICU.

Thank you to everyone who has given prayers, love, and support to Joshua, to us, and to our families. It has been a very long and arduous journey to get to where we are now. Home is in sight and we all could not have made this far without everyone's kindnesses. Steven and I are amazed at the generosity and selflessness of so many people, many of whom are strangers or acquaintences. There aren't enough words to express our grattitude...Thank you.

Please continue to lend support to Josh's friends, Lydia Tripp, Stefanie Morrison, and Mary Rapsas, as they continue on their journies.

More to come...

Erica

Thursday, August 15, 2002 at 02:36 PM (CDT)

Hi everyone. It has been determined, just an hour ago, that Joshua will need a VP shunt (ventriculo-peritineal). His current shunt was clamped yesterday morning, and some sutures were removed at that time to allow for more drainage of the infection. Today, Josh's head is more swollen and Josh's dressing of his externalized shunt is very wet-a big decision maker . The leakage from the shunt site means that the CSF is needing to find a way out. His body has been telling us that he needs the shunt, so we're all listening. The decision for a VP shunt versus another lumbar shunt was an issue. Actually putting another thing into Josh's head after he's already had two infections was an important factor to consider. However, the lumbar shunt is not right for Joshua because he needs longer use of the shunt than what a lumbar shunt can provide. The VP shunt will go from his head to his stomach. The surgery for the VP shunt will be tomorrow morning at 7:30am; although, that time will could change. Following the surgery, Joshua will likely need to be hospitalized for at least a couple days for it to heal, but it could be longer depending on his other issues.

Steven and I, the doctors, and our families were pretty much all expecting this to be what was needed. It's no surprise that Joshua needs a more permanent shunt. We all hope that this will be the end of what has been a very long and arduous time of medical complications. Please keep in mind that Steven and I have no regrets about the original surgeries to try to alleviate Josh's epilepsy. Our goals have always been and will continue to be that our little boy can live a life free of seizures and other potentially correctable disorders that are obstacles to his living a full life.

Joshua continues to smile and talk. He knows that he is very loved and gives so much love to everyone who is around him. We will all get through this. Joshua, with help from us, and us, with help from Joshua. Going home is in the forseeable (sp?) future. We can't wait.

For now, Steven and I are both trying to get some breaks for ourselves. He went to the beach last Sunday and Monday and I went to the beach yesterday. I felt so relaxed sitting on the beach on what was an almost perfect day. It would have been more perfect had Stevena and Joshua been with me. I'll also try to get to the beach again in the next couple weeks. We'll hope for family beach time next year.

As always, thanks for the ongoing support and prayers.

Erica

Tuesday, August 13, 2002 at 08:29 PM (CDT)

Hi all. Sorry it’s been a while since the last update. The weekend was very nice and quiet for us all. Steven was able to take a break with his family at the beach for Sunday through Monday. I will try to get a short break in as well.

Joshua continued to leak pus from his head through the weekend and it only began to subside today, after Dr. Fried had removed a suture yesterday. His head continues to SLOWLY heal. Josh will need to continue on the newest antibiotics for a while until the new infection looks completely gone.

Josh still has an external lumbar shunt. It continues to drain lots of very nice looking CSF, hopefully allowing his head to heal a bit more. Tomorrow looks like the day for clamping the shunt to see if Josh’s head and body will be able to handle the increased flued and pressure. Decisions about what to do next will then follow on Thursday or Friday. Steven and I, and many of the doctors too, agree that Josh will likely have a VP shunt placed on Friday or Saturday. Dr. Fried reported that kids who need shunts after craniotomy are very often kids who would have eventually needed a shunt anyway because their bodies are less able to handle increases in CSF.

Joshua’s gained all sorts of weight from the TPN. He’s up to 28 pounds, 13 ounces as of this morning. WOW. His cheeks are filled-in and squishy, kind of like marshmallows. He’s got belly over hang and two chins. We are thrilled. Aside from the head stuff, Josh is one of the healthiest looking kids in the PICU.

We are watching some blood levels closely. Once again, Josh’s liver function tests levels are rising. His hemoglobin is also dropping. He will be closely monitored. Josh’s stomach continues to not work. Josh actually vomited on Sunday night. It was a big surprise for everyone including Josh since he hadn’t vomited for months. Poop is still profuse with a bright red tushie. Butt paste is essential to bad diaper rash. Also, Josh’s spasticity has increased dramatically. Medications are being increased as we speak.

In spite of everything, Josh remains his very happy self unless he needs a dressing change for his central line or head. Yesterday was a bit on the rough side with no nap and lots of medical stuff, but he still managed to smile. Today, Josh had lots to say to everyone. He smiled, flirted, answered questions, kissed and hugged, and sang songs. It helps to keep us all going.

Please pray for Josh’s friend Stefanie as she prepares to enter HUMC for grids and epilepsy surgery. She and her family are very nervous but eagerly awaiting a life without seizures. Her website is www.caringbridge.org/ny/stefanie.

That’s all for now. We’ll let you know as things progress. The prayers and love keep us going. Steven and I can’t thank you enough for sticking with us. A break must be coming for us all to have a collective sigh of relief.

Erica

Saturday, August 10, 2002 at 08:32 PM (CDT)

Hey everyone. We are having a low-key weekend thus far. Josh is simply healing and draining from his head. Friday, we were unsure what Dr. Fried would recommend for Josh. He wound up leaving the sutures intact because Josh’s head is draining a whole lot of pus even with the sutures in. The CSF that is continuing to be drained looks good and continues to drain as well. The plan for the weekend is to lay low, let the antibiotics work, let the pus-head drain, and talk more on Monday about what needs to be done at that point. So, for now we hang out in the PICU. Our gut feeling at this point is that a VP shunt is unavoidable for sometime this week when the newest infection is in more control. Let’s see if Josh will surprise us.

Debbie Kogan, MD, the Gastroenterologist, feels horrible that she can’t help Josh’s tummy. Josh continues to poop uncontrollably due to the heavy-duty antibiotics. Ten ml (2 tsp.) of Pedialyte made his stomach even worse, if that’s possible. For now, we have to allow the antibiotics to do what they need to do before pushing Josh’s stomach to handle food. As it is, medications are not being absorbed very well. He is quite spastic – to the point of having constantly sweaty hands and feet. Sitting still is not an option. Josh is back and forth from crib to lap with the many diaper changes (sometimes 5 an hour!) and trying to keep him upright. It’s exhausting for us all.

Lots of doctors are concerned about Josh. They’ve even told us that Josh is the most challenging patient Dr. Fried has ever had. An honor we’d prefer to not have. The doctors and nurses are being a further support to us as they want us to leave already. They are grieving for our missed beach vacation with us. They are hurting for us because they know us so well and are becoming more fond of Josh. They have become part of our family and will always be welcome at our home and our celebrations. We are fortunate to have such caring people looking after Joshua.

Steven and I enjoyed our low-key day just being together. There were no interruptions from lots of visitors or doctors. We played Boggle and laughed a lot. (I whipped his butt in Boggle.) Tomorrow, Steven is going to go to the beach for the day and come back Monday afternoon. Things with Josh are stable enough, and it is a much needed break for Steven.

There’s no doubt this stay is trying. We are beat. The light at the end of the tunnel seems in sight as far as getting home. We know the healing will be a long process and will likely prevent him from attending his new school in September. But, healing is the priority. With time, Josh will be able to enjoy all that he had been doing and all that he wants to do.

Thanks for the continued prayers and support. We are amazed by the kindness that comes our way, often from complete strangers. It is heart warming. Thank you, thank you.

More updates to come.

Erica

Thursday, August 08, 2002 at 09:44 PM (CDT)

So tonight will be a short update. Dr. Fried came by today to check out Josh’s head. He gave it a good squeeze and yucky stuff came spewing out of 4 places. He said that that was good because we need to get it out the pus to get rid of the infection. Because of the leakage we re-wrapped Josh’s head to collect the pus and stuff. Dr. Fried might take out a suture or two to help the area drain easier.

Also, Dr.’s Piwoz (Julie) and Kogan (Debbie the second Dr., she calls herself, not to be confused with Aunt Dr. Debbie) came by. Debbie was upset that we will miss our beach vacation but wants to start to try Joshua on some ½ strength formula over the next few days. She wants to do more for Josh but we need to get him off the antibiotics because they cause such havoc with his stomach. Julie looked at Josh’s head and wants the pus out too. She feels confident that we will get rid of this infection and is working with Dr. Fried to do so.

All-in-all a very slow day. Josh slept a lot, pooped a lot (antibiotics), and retched a few times. We are playing it low key and want to get Joshua as healthy as possible before we go home. I spoke with Erica a little bit ago and she said Josh was sleeping soundly.

We look forward to better days ahead. Thanks again to all of you for your thoughts and prayers. One day at a time, one step at a time and we will get through this.

Steven

Wednesday, August 07, 2002 at 09:49 PM (CDT)

Good evening everyone. Good news!! Joshua’s infection has been identified. It is a non-resistant infection that is easily treated with a relatively short course of antibiotics. We are so excited that I think we actually glow. Dr. Fried was grinning from ear to ear. Dr. Piwoz (infectious diseases) was giddy. We couldn’t be happier that this is not a more severe infection. Further good news is that that his CSF cultures have been completely negative.

Joshua’s head was unwrapped today. Actually, he did it himself. It looks quite good compared to what it was. The swollen area on the left side, where the titanium mesh is placed, is now completely flat, a sign that the lumbar shunt was not working properly when it was internalized. The right side, where the new infection, sutures and previous leaking is, is looking nicely closed but a little bit swollen as a combined result of the infection and the surgery.

Joshua will have the shunt remain externalized through to the weekend when it may be clamped or raised to see how he does. If he does well he may not need another permanent shunt. If not, he will have surgery next week for a VP shunt (head to stomach). If all goes well (lol – I just can’t help but laugh whenever we say that), Josh could be out of the hospital sometime next week.

Steven and I are so thrilled to spend just two weeks or so in the hospital rather than what could have been an eternity. No vacation at the beach, but so what. Our child will be all right. Josh’s head is a “disaster area” as quoted by Dr. Fried, so we have no business being there anyway. Let’s get home and get healthy. Everyone at the hospital has been so supportive of us that we are able to continue to survive in the chaos of the intensive care unit. Their professionalism, compassion, and skill are remarkable. We are so very grateful to live in this area with this incredible hospital.

Strength to continue is renewed with a bit of good news. We will all make our way through to health one step at a time.

Continued thanks to everyone for prayers and support. We will never be able to thank everyone enough for helping us through our cycle of medical complications. Please, know that we will never forget this kindness.

Erica

Tuesday, August 06, 2002 at 10:02 PM (CDT)

Hi everyone. I’ve just arrived home from a much better day at the hospital. First, huge thanks to Aunt Debbie for posting the update yesterday. Steven and I were in no shape to let you all know what was up. Today has improved. But, sorry in advance for typos or confusing language. I'm tired and will clarify anything tomorrow.

Josh is doing much better since his surgery yesterday. He had morphine all night to keep him comfortable and rested. He finally woke up at noon-ish for some love and hugs on Mommy and Daddy’s laps. He’s still in pain but it is much more controlled. His right eye is swollen but not as badly as his eyes had been after his first neurosurgery back in May.

We finally got news back from some of Josh’s tests this afternoon. The Infectious Diseases (ID) doctor was in to spread the good news. Josh does, indeed, have a new infection. It is new because it is in a new site involving the skin on the right side of his head and definitely NOT in his CSF. The infection is one that is not responsive to the Vancomycin that he has had for the last eight weeks, so Josh has started a new antibiotic, called Fortaz, that should cover the bug. Dr. Fried felt confident that the infection did not get to the bone in the right side of Josh’s head and was pretty much isolated to a pocket of pus. Josh will remain on the Vancomycin through the final culture results and will then come off it. After a couple days, he will be swabbed in a few areas, where staph is known to grow, to see if the MRSA is indeed gone completely. Josh will have a course of Fortaz through his next surgery and until he is healed.

I say next surgery because his shunt was externalized and Josh can’t go around with a shunt hanging out of his back. Dr. Fried will leave it externalized while he monitors Josh’s CSF and pressure in his head. If he determines that Josh still needs a shunt, then the determination to do a VP shunt from his head will be made. Or, Josh may have is lumbar shunt removed if the pressure, leakage, and healing improves. We will know over the next couple days what will be needed.

Our relief that this infection is not a new site for the MRSA is unexplainable. Steven and I could not help but feel completely scared out of our minds of the enormity of the very BAD possibilities of this crisis. Our thoughts ran the gamut of the prospects of months more of the Vancomycin, if it was still an option, of his being resistant to the Vanco and not having another option for treatment, and to the infection going to the bone and not being able to remove another piece. Thoughts of losing our little boy were very real and very frightening. Fortunately, we know now that he will be all right. We’ve all been able to breathe a sigh of relief this afternoon and evening. Tears of joy rather than fear are aplenty.

We continue to wonder where our strength will come from to endure whatever lies ahead. But, we are reminding ourselves that one hour at a time, and together, our family will endure what we hope will be the final days of this latest crisis. We cry, pray, hold hands, and hold Joshua together. Love endures and gives strength throughout.

We will update in the next couple days as we know more. The prayers and love that are being sent our way mean the world to us. Thank you.

One last thing. Please continue to pray for Josh’s friend Mary Rapsas. We are hoping to not see them during our admission at the “hotel”. Also, we ask for your support for Josh’s friend Isaac who is in the hospital now having a Baclofen pump placed and adjusted to treat his spasticity (an option for Josh). He has a week of healing in the hospital and is right now very uncomfortable in the PICU, across the hall from Josh.

Erica

Monday, August 05, 2002 at 08:54 PM (CDT)

Hello, all. This is Aunt Debbie (Erica's sister). I had a long talk with Erica and she asked me to write tonight's update. If only I could help out more...

Joshua saw Dr. Fried this morning. Things did not start off well when he immediately became very concerned because he felt that the drainage from Josh's head was pus, not just CSF. Josh was taken to the OR where his lumbar drain was externalized (the abdomen-end taken out of his body so the flow can be monitored closely) and the draining area of his head was explored. Dr. Fried found an area of infected scalp overlying a pocket of pus. He felt that the underlying bone looked okay, but he removed a piece of wire mesh that had been placed last week to help close up the hole in the skull left over from the grid placement. A sample of the pus was sent to the lab for culture. Josh came through the surgery okay and returned to the PICU extubated (breathing on his own).

This is really not good news. Josh has been on big doses of the antibiotic vancomycin for about 6 weeks now, which theoretically should have prohibited infection with a large number of bacteria, especially the MRSA (methicillin-resistant Staph aureus) that caused the bone flap infection. Therefore, right now a lot depends on the identification of the bacteria causing the current infection. It's possible it's a different bug that would need a different antibiotic. If it's MRSA again, that's a problem that the Infectious Disease docs are going to have to work out. We also have to really hope that the infection isn't involving the skull in this area. Right now there are a lot of 'what if's' but no clear anwers. Only a few things are clear right now: Josh needs to be where he is, he can't get a VP (ventriculo-peritoneal) shunt now because of infection risk, he's going to be on antibiotics for a longer period of time, and Josh, Erica, and Steven need and deserve a break.

Obviously next week's vacation is off. Erica is staying with Joshua tonight, in part because she wants to be with Josh and in part to give Steven a rest in preparation for another day of questions and emotional roller-coastering. Please send all good thought, prayers, vibes, karma, etc their way. I know we here in OK are not alone when we say our hearts ache for what Josh and his parents are going through, and that if there were anything we could do to help, we would do it in a heartbeat.

Aunt Debbie (and Uncle Peter and medium-cousin Simon)

Sunday, August 04, 2002 at 07:47 PM (CDT)

Hello again. Yes, we’re home and enjoying…until tomorrow morning. Josh continued to leak/drip CSF throughout the weekend. He’ll be admitted again tomorrow to do “whatever it takes” to stop the leaking and help him to heal. Steven and I are covered with CSF (Steven even got a taste of it – yech!) as is Josh’s bed. He’s been held upright all weekend with less times of misery today. He was pretty happy to be held, but seemed frustrated that he couldn’t play with his toys on the floor. We pray that this all should come to an end soon.

Dr. Fried is not exactly sure what he’ll do for Joshua until he sees him tomorrow. It may be an external drain or a new shunt, possibly from his head, and/or something to reinforce his head from leaking. Whatever it is, Dr. Fried will be more aggressive and do whatever is necessary to help Josh. We will meet him at his office tomorrow morning at 8:30. Bags are ready to go.

Steven and I are realizing that the vacation at the beach next week is a long shot. It is not likely to happen even though we all need a break desperately. The reality of taking a child who is most likely going to have more sutures to a place with sand and water is not ideal. He will not be allowed a bath let alone time to play in the ocean or sand. Even if we put lots of sunscreen on him and go for walks, he won’t be able to have a good bath each day. We’ll know what will be tomorrow.

Please pray for Joshua and for us as our rollercoaster ride continues.

Erica

Saturday, August 03, 2002 at 07:43 PM (CDT)

Hi everyone. Good news. Josh was discharged yesterday from the hospital. He did not leak overnight to Friday morning and the swelling of his head and back (location of the shunt) were not profoundly different. His x-ray looked good and Dr. Fried did not feel that the “shuntogram” (LP with a tracer and scan over a period of hours to see if the lumbar shunt is indeed working) was warranted. He said to quickly get out of here and call over the weekend. Steven and I are thrilled to be home together. Grandma Marilyn helped mightily to get home and get squared away here. Josh was thrilled. Thank you Gram.

Bad news. Joshua woke up leaking. He’s been leaking all day. It’s not been a tremendous amount of leakage but enough to be a leak. We’ve even held him upright all day, just as we do when in the hospital. Josh has also had his temperature creep up all day long to a high of 100.6 degrees rectally. His head is not very swollen, but his back is a bit more swollen than yesterday. Not good. Dr. Fried told us to watch him for the next day or two and call if anything changes. Normally, anyone with a CSF leak would be told to go directly to the ER, but since this is Josh, we can wait a bit longer. Needless to say, our bags are still packed. Josh went to sleep without a problem tonight, and we’re hoping for an easy night. Let’s hope for a dry head tomorrow.

That’s all the news. We’ll update more as we know it. Thanks for the ongoing support. We certainly need it.

Erica

Thursday, August 01, 2002 at 08:01 PM (CDT)

Hi everyone. I just got home from the hospital…without my guys. Josh is still in the PICU and not ready to come home as was expected today. To everyone’s amazement, he woke up this morning with more leaking!! How can it be? Everyone wants to know. The leaking was from the same spot as before. It is not clear if the fluid was CSF or just fluid from his incision healing. Josh has also been noticeably cranky and not his usual happy self. His head continues to be a bit swollen, more than the last couple days; and his back, the site of the lumbar shunt, is a bit more swollen as well.

The big question is if the lumbar shunt is working. The plan from here is to have an X-ray of his lumbar shunt to see that it is still in place. Next is to watch for more leakage and try to determine what it looks like. Finally, a test with nuclear medicine may be ordered where a lumbar puncture is performed and a radioactive tracer is injected into Josh’s CSF. Then, a series of scans can be performed to determine if the tracer is making its way to the shunt or not. If not, then we know that the shunt is not working properly. It happens, not all the time, but lumbar shunts can get clogged.

While we were talking to Dr. Fried this afternoon, we became concerned that Dr. Fried was thinking that we might be neurotic with our concerns. As it turns out, he’s simply frustrated about Josh’s head, etc. He said that out of the thousands of kids he’s cared for over the years, Josh is one of the most difficult cases he’s ever had. Isn’t he lucky?

Steven and I are feeling like our hopes have been dashed. We know that this will all be behind us someday, but why can’t that day be sometime this week? As usual we remind ourselves that we, and Joshua, can survive this one day at a time, one hour at a time if necessary. Thanks for all the support and love being sent our way. It continues to be a sustaining force in our lives. We’ll let you all know the latest tomorrow.

Goodnight for now.

Erica

Tuesday, July 30, 2002 at 08:39 PM (CDT)

Hi everyone. Today’s visit to the OR was definitely a necessary one. Dr. Fried did what he had to do in about an hour’s time. Once Josh’s original sutures were out, Dr. Fried saw that the skin on either side of about half-inch of incision had not sealed together as it should have. Instead of growing together, it grew under itself and sealed very nicely to itself leaving a nice open area. To make it worse, the half-inch incision area in discussion is directly over a hole where wires from strips were coming out of Josh’s head back in May. This hole is one that was drilled into his bone and will therefore always be an open area of bone. All of this combined for an exit route for CSF. Yep, Josh would have had to visit the OR no matter what to have the skin fixed so that it could heal together. One question we have been asked is: Could Friday’s lumbar shunt surgery been avoided if today’s issue had previously been addressed? The answer is no. Josh’s CT scan from Thursday night showed increased intercranial pressure that necessitated the shunt as well. This hospital visit was unavoidable.

Josh did well with the surgery. He went to the OR around 11am, after another little girl whose family we’ve become friendly with had to go for a shunt. Josh came back to the PICU awake and crying. He did need to be intubated for the procedure, but he was extubated by the time he returned to the PICU. Josh took lots of morphine for pain but was still uncomfortable. He never did nap from it all. He started to feel better once he was picked up and the nasal canula, for oxygen, was taken off his face. Josh managed to wiggle out of the bandages on his head twice before the end of the day and needed to be re-wrapped. The rest of the day was eventful when Josh retched big and helped to dump the contents of his stomach, which included his 3pm medications for seizures and spasticity, all over him and me and the floor. It was too late to re-dose the meds, so he was extra fidgety, uncomfortable, spastic, and with seizures. Next came an allergic reaction to something, we assume his Vancomycin. He turned red, got hives, and became tachycardic. He did not respond well to the Benadryl given, and his heart rate was still hanging out in the upper 170s when I left the hospital. Steven has already called to let me know that his heart rate is coming down to the 130s, while sleeping.

We were told that “if all goes well,” Josh may come home tomorrow. I can’t help but laugh every time I hear “if all goes well.” Even the doctors and nurses laugh when anyone says that. We shall see what Josh is going to do. Tomorrow morning, he will go for another CT scan.

We’re hoping that each day will get easier and easier. For now, we wait as patiently as we can. What I wouldn’t give for boredom.

Thanks everyone for checking in with the website, email, telephone, mail, and visits. More updates tomorrow.

Erica

Monday, July 29, 2002 at 08:08 PM (CDT)

Good evening everyone! We were supposed to be coming home today, alas that did not happen. We would have come home if Joshua did not spring a leak in his sutures in his head. So after that happened we met with Dr. Fried and determined that he would go in and clean up the opening, glue the leaking area, and re-suture Josh's head.

Needless to say that it was another day of waiting. Tomorrow Joshua will have the procedure under anesthesia at 8 AM. After that we will see when we will be going home.

Other than that it was a low key day at the hospital we are just in waiting mode. We hope tomorrow will be an easy procedure and we will be home soon.

Thanks again to all of you who check in daily.

Steven

Monday, July 29, 2002 at 08:08 PM (CDT)

Good evening everyone! We where supposed to be coming home today, alas that did not happen. We would have come home if Joshua did not spring a leak in his sutures in his head. So after that happened we met with Dr. Fried and determined that he would go in and clean up the opening, glue the leaking area, and re-suture Josh's head.

Needless to say that it was another day of waiting. Tomorrow Joshua will have the procedure under anesthesia at 8 AM. After that we will see when we will be going home.

Other than that it was a low key day at the hospital we are just in waiting mode. We hope tomorrow will be an easy procedure and we will be home soon.

Thanks again to all of you who check in daily.

Steven

Sunday, July 28, 2002 at 08:52 PM (CDT)

Hi Everyone. Just now home for the night. Joshua is well today. Yesterday was a bit rough with lots of retching, low grade temps, and some pain. Dr. Fried was in yesterday and said that we would have to watch the leakage issue. If Josh does leak again, as he had on Friday night into Saturday morning, Josh will have to go back to the OR for his current sutures on his head to come down, the area cleaned, the leaker sutured, and new sutures to close the whole area. We've been on watch for leaks and are trying to keep Joshua upright as much as possible. Dr. Fried wants us to keep Josh from crying too much as well. That means that Joshua is practically attached to us at all times.

Last night, Joshua slept well through the night. He woke up relatively happy despite the bath he needed to have. His pain was better and his temp was down to almost normal. So far today, no leakage. Dr. Fried was in again today to check on leak status. We'll see what tomorrow brings. For now, Josh remains in the PICU. He may be discharged from there tomorrow if no leaks are sprung. Let's hope for tomorrow.

Once again, therapies for tomorrow will need to be cancelled. Life continues to be on hold. We did succeed, however, in finding a nurse to join us for two days while on our summer vacation at the beach in a couple weeks. Hooray for the small victories.

The nurses, doctors, and all the staff at the hospital familiar with Josh are amazed at his weight gain. He's got big cheeks, two chins, and belly overhang. Josh's thighs are even getting bigger. Amazing for us to even see. Josh weighs over 27 pounds now.

Good news on the blood front. Josh's liver levels are normalizing, potassium has normalized, Hemoglobin levels are staying in the 9 to 10 range, and everything else looks good. A breath of relief by all. Josh is no where near ready to handle feeds in any consistent way, so he'll remain on TPN (total parenteral nutrution) for a while.

I've got to go to sleep before I fall over. Steven and I are managing to survive somehow. Keep the prayers and support flowing our way. It makes a world of difference. That's all for now.

Erica

Friday, July 26, 2002 at 09:36 PM (CDT)

Hi everyone. I just got home, showered the hospital off myself, and am getting ready for bed after another exciting day. First and foremost, Josh did well through the shunt placement. It was a quick and easy surgery. The longest part of it was set up in the OR and giving the anesthesiologist some history on Josh. He is right now sleeping in his crib in the PICU with the help of exhaustion, morphine, and his evening medications.

Josh had a CT-scan last night that showed increased pressure in Josh's head since the last scan a week and a half ago, confirming the need for the surgery. The morning went pretty well, aside from lots of violent retching. Around noon, the day started to become exciting when results of his morning blood test were read, and it was found that Josh’s potassium level was low – possibly too low for surgery. Keep in mind that surgery was scheduled for 1pm. Lots of calls to the doctors who agreed to do the surgery but give a big IV boost of potassium, but the level would have to be watched closely during and after surgery. The issue delayed surgery about a half hour. No big deal, but Josh can’t ever do things by the book.

After surgery, Josh went to the PICU still intubated because he was having trouble waking up, breathing on his own, and keeping his airway open. Not unusual, it has happened before. Steven and I then got the real excitement for the day when we were waiting in the hallway while the PICU team and anesthesiology team were settling Josh into the room. Josh somehow extubated himself and was not ready to do much breathing on his own at that point. All we heard was, “Get the Vent(ilator)!” Once we finally heard what Josh had done and that he needed to be intubated again with some sedation, we understood and were able to slow our heart rates again. After a tense hour, Josh settled down. He woke up, was suctioned a bit to get some gunk out of his airway, and was able to be extubated. Once again, Josh can’t ever do things easily.

For now, Josh’s blood will be monitored closely for any fluctuations that need to be addressed. He has already had some x-rays to check that everything is placed correctly. Josh will also have his pain addressed throughout the night for a peaceful night’s rest. I spoke to Steven a short time ago. He told me that there’s already some leakage from Josh’s head, as seen on the bedding and as viewed on his scalp. Dr. Fried is being informed. The shunt was supposed to take care of the leakage….

Information about the lumbar shunt: It is a completely internal device that is inserted in Josh’s lower spine and connected to his stomach for draining. The flow of CSF is controlled by the pressure of the CSF in the tube; shunts are tested prior to use as to how much pressure is needed to release fluid from the slit at the end of the tube. The lumbar shunt can remain in Josh indefinitely, but it will only be workable for a few months – ideally, enough time to allow Josh to heal his head. The infection risk is similar to, if not better than, continuing to do sutures in Josh’s head. Leakage from Josh’s head should stop completely in the first day of shunt placement. Shunt placement will be the quickest way to heal Josh’s head. Surgery took about 45 minutes and Josh should only have to stay in the hospital a couple days. A lumbar shunt is used, versus a permanent shunt placed in his head, because Josh does not need such a permanent device and the safest device is in the farthest place from the original infection. Please let us know if you have anymore questions that we might be able to answer.

Steven and I were able to have a nice Shabbat meal together, in spite of the chaos, thanks to Marianne Shulman tracking us down at the hospital. Thank you Marianne and to everyone who has helped us with so many meals. These words are not enough to fully express our gratitude.

I left the hospital having held Joshua. He talked, smiled, and sang songs with me reassuring us that he will be all right. He has a great way of doing that. He went to bed knowing that he is greatly loved by us and by so many family and friends. Thanks everyone for continuing to let us know that we are in your thoughts and prayers. Your love and kindness has an amazing way of sustaining our family as life continues to throw curve balls our way.

More to follow.

Erica

Thursday, July 25, 2002 at 09:55 PM (CDT)

Hi so where do I start? Being home has been good. I use the word has because we are back in the hospital. Josh has started physical therapy at home and we are gearing up for his other therapies. Josh has been cleared for most therapies right now.

We spent most of this week either at doctors offices and discussing what to do about the leakage from Josh's head. So last night after another visit to Dr. Fried to re-enforce the area we decided that a lumbar shunt is the way to go. So today (Thursday) we spoke with Dr. Fried and where admitted. Tomorrow Joshua will have surgery for a lumbar shunt. This should ease the swelling and leakaage on his head and help with the healing too. It is a quick surgical procedure and then we will be in the PICU. We are hoping to come home later this weekend.

Right now Joshua and Erica are on the regular peds floor and I am home. The surgery is scheduled for tomorrow afternoon.

This was a tough decision for us but we realize that it will help Josh heal faster and get better sooner. Thanks again for all of your prayers, thoughts, and wishes. They really helps us get throught the long days.

Steven

Thursday, July 18, 2002 at 11:26 AM (CDT)

Hey everyone. Yep. We’re still at home! The suture removal went well on Monday. Josh also had a CT scan with good results and a lumbar puncture to relieve pressure and to culture for infection. So far so good. Josh had some quickening of respirations once we got home on Monday and still has some bouts of it. We’re guessing it may have been a pain response to the LP/suture removal. Joshua also needed an adult dose of sedation for the procedures. We warned the Anesthesiologist about it, but she did not believe it until the procedures started and he just would not go out. She came out to see us and said that he had so much sedation that he’ll probably sleep another couple hours. Josh woke up about a half hour later. His body metabolizes medications so quickly that large doses of medications are often required.

We continue to lay-low here at home. Medical clearance to begin therapies again was just given with the precaution to avoid anything too strenuous or anything that will influence swelling of his head. Steven and I have already gotten appointments with the OT and PT to start next week. Hopefully the rest will follow soon. I still need to check whit the doctors about starting back with Hippotherapy and MEDEK. I hear that Dakota misses Joshua. Josh definitely misses Dakota.

Josh is now sleeping better. He’s sleeping through the night. The sheets need to be changed in the morning for sure for our little pisher. He has been sitting in his high-chair again and playing with his toys. Josh loves just being home. It’s so nice for us all to just be home.

Steven and I watched the TNT special “Door to Door” on Monday night. Yep. We did it. No, we’re not crazy. It was phenomenal. William H Macy is due to win an award for his performance. “Door to Door” was powerful to us as parents of Josh, a child with CP. We held each other and a box of tissues for the whole two hours. Then, we cried some more. The program allowed us to open the flood gates of our emotions and then find a way for them to close again. It was an exhausting, wonderful, tear-filled night. Please, make a point to see the program when it is on again. "Door to Door" for anyone, especially if you have had any contact, even through this website, with Joshua.

Good news for Steven’s mom. Her final pathology report came back completely negative! We are all so excited to hear the good news.

My Grandfather was just in the hospital for a few days and arrived back home yesterday.

Steven is in full swing on the hunt for a job. He’s also catching up on things for himself and at home. He’s been a great help for me during the readjustment back home and for a much needed break for myself. I could not have picked a better husband or father for Joshua.

That’s all for now. We hope that things will start to resemble boring sometime soon. Boring could be good. Don’t you think?

Please know that the support, prayers, many meals, emails, web-posts, web-hits, and calls are supportive in immeasurable ways. We still don’t have our heads back on completely, but we know that easier times are sure to come. Thanks for helping us get there.

Erica

Sunday, July 14, 2002 at 03:21 PM (CDT)

Hello everyone. Joshua is back home. This hospital stay was short and sweet. Thanks to Aunt Wendy and Uncle Jeffrey for posting the last update. As they wrote, Josh yanked out his central line (aka Broviac/Hickman) on Friday morning. We are very fortunate that it did not bleed at all. However, it was a rush to the hospital to be sure that he could get a new one placed asap as he needed medications and TPN. We made it to the ER at 9am and were admitted to the pediatrics floor at 11am. It was a very busy day for the ORs, so surgery could not be done on Friday. Yesterday morning, Dr Valda placed a line in Josh’s chest. Josh recovered very quickly with lots of smiles and talking right away. Discharge was then possible for that same afternoon. Changes were made to his TPN order, and fortunately, the infusion company was able to make the new TPN on the weekend. Otherwise, Josh would have had to stay at the hospital until Monday.

New concerns have arisen about Josh being on TPN. We found out on Friday that Josh’s liver levels are elevated and have been for a while. This is a concerning side effect of TPN and must be addressed. The elevated levels can also be a result of the infection. We cannot ditch the TPN yet because Josh needs nutrition and Vancomycin must be administered. However, we are going to have to push Joshua’s stomach along with food to protect his liver from the side effects of TPN. More to come on this issue.

Getting home was good. The evening became a little tense when Joshua spiked a fever. After speaking with the pediatrician, we made a plan of action and stayed home. Josh is fine today. He slept through the night and even took a two-hour nap. Low key is the theme of the day, so we’re getting lots done at home. Tomorrow, Josh has suture removal and a CT scan. Another exciting day.

Thanks everyone for continuing to keep Joshua in your thoughts and prayers. Josh is still pretty fragile. We are still monitoring closely to decide the necessity of a lumbar shunt. Hopefully that will be a surgery and a hospital stay that can be avoided. Steven and I are getting more worn out. Josh’s care is quite labor intensive. Crises happen often for Joshua and in our extended family. We wonder when the faucet of crud will shut off. Better days are sure to come, but not soon enough. Please continue to pass on some strength to us and health to our family. It makes a world of difference.

Erica

Friday, July 12, 2002 at 08:53 PM (CDT)

Hi All- Aunt Wendy & Uncle Jeffrey are writing this update- Joshua went back into the hospital this morning. He inadvertently pulled out his central line that allows him to get the critical meds to help control his infection. He will be having surgery tomorrow morning to put in a new central line. This is a relatively routine procedure. Fortunately when he pulled out the line- it was a clean yank - it could have been worse had there been a fracture in the line. Of course Steven & Erica were extremely concerned, as Josh was wondering what all the fuss was about.

Grandma Ellen is doing fine, after a second minor procedure as a follow up to the one she had two weeks ago.

Steven & Erica will write an update tomorrow. As always, Joshua knows that he is loved. Especially by Aunt Wendy & Uncle Jeffrey!! We would like to take this opportunity to thank everyone who has been so supportive to Erica & Steven & Joshua. We love them so much, and it warms our hearts to see how much love other people have for them as well.

Aunt Wendy & Uncle Jeffrey

Thursday, July 11, 2002 at 08:54 PM (CDT)

Hey everyone. We’ve been home since Monday and are trying to manage a new routine and a much more rigorous schedule of Josh’s care and monitoring of his status.
Steven and I are still fighting off our illnesses. In spite of all the chaos of routines, illnesses, nurses, doctors, etc., we’re thrilled to be home.

Josh is by no means out of the woods for needing surgery for a lumbar shunt. It could happen at any time. In fact, this morning we ran off to the neurosurgeon after a busy night of violent retching, head swelling, and a little bit of leaking cerebro spinal fluid. The bags were packed to stay at the hospital and to have urgent surgery today or tomorrow. Right now, we’re planning to monitor him and talk to Dr. Fried as needed. The plan is to have suture removal with sedation on Monday. Dr. Fried will also do a spinal tap (LP = lumbar puncture) to culture his CSF and relieve some pressure. Josh will also have a CT scan the same day. For now, we wait and see what Josh will do.

While Josh is home with his sutures and an unstable situation, we’re being very careful with him. He does not have medical clearance for therapies and activities, so we’re really laying low. Today was our first outing since discharge from the hospital. Josh did better than expected in the car and his stroller. We visited some staff that had cared for Josh and had lunch in the cafeteria while waiting to see the pediatrician for medical clearance for Monday’s procedure.

Steven and I are becoming quite adept in doing IV care and are continually amazed at the new medical things we learn. We are exhausted in providing so much care, but we are reluctant to have overnight nursing for various reasons.

Thanks for praying for Joshua and for us. It’s been a trying time to say the least. Please continue your thoughts and prayers that we can continue to get through the challenges ahead.

Please also pray for Joshua’s Grandma Ellen. Her second surgery for breast cancer is tomorrow.

Also Great Grandma Rae was discharged from the hospital on Monday and on Tuesday Great Grandma Pearl entered the hospital.

More to come.

Erica and Steven

Monday, July 08, 2002 at 09:45 AM (CDT)

Good morning! I am writing from the hospital library. It looks like we will be going home from the hospital this afternoon! In a word YEAH!

Erica spent last night at home trying to rest, yeah right, she was cleaning and getting the house ready. We are coordinating with all of our agencies, for nursing, IV therapy, and more. Barring anything drastic we should all spend the night together at home.

We really need to get out of this place as Erica and I both battle colds/infections and Joshua just keeps doing better. We will update again soon and thanks to all for your messages of caring.

Steven

Saturday, July 06, 2002 at 07:21 PM (CDT)

We are out of the PICU! Yesterday afternoon they moved us upstairs to room 3508. The Doctors even hinted we might be going home on Monday! Needless to say we are excited. Joshua is doing well (even better than his parents). He is smiling happy, has decreased retching thanks to Zofran and is generally doing better. We are even getting him into some stanidng and sitting in his stroller! We are hoping for the best and are looking forward to being home as a family.

Now I was nice enough to pass on a cold to Erica. Which knocked her silly yesterday so she went home early for some much needed rest and relaxation. The sleep did her a world of good and she felt and looked much better today. I am no home trying to get rid of this cold too so I can help more with Joshua.

Other news, Grandma Rae is feeling a little better but will remain hospitalized until the pneumonia clears up. Christina Buchannan (the 17 year old who was in the next room in the PICU) was also moved upstairs on Saturday. Even better news is that she went home today! She looked wonderful and we are amazed at her speedy recovery from such a serious injury and traumatic experience. We are glad to see her leave looking so good. You should have seen the smiles from her parents!

We are looking forward to a relaxing day Sunday with a brunch visit from Aunt Wendy and Uncle Jeffrey. We really hope Monday we can be home as Joshua is feeling really good. Thanks again to all of you for your thoughts, posts, and emails.

Wednesday, July 03, 2002 at 07:55 PM (CDT)

Hello all. Josh was scheduled for surgery this am for placement of a lumbar shunt. The surgery was cancelled when Dr. Fried arrived to find that Josh had no swelling or leaking CSF. Good news. But, we are waiting for Josh to start leaking anytime now. If we hadn’t scheduled the surgery, Josh would have needed it this am. Now that it was cancelled from today, we are expecting it anytime in the next few days. Okay. We sound a little pessimistic, but so do the doctors. We won’t be surprised if surgery happens over the next couple days. Josh is still in the PICU because he is still at-the-ready for surgery. Josh's GI issues are also being monitored. Josh is still not eating anything but may start some small amounts in the next couple days to try his gut again. One of his antibiotics was discontinued today, so maybe he’ll do better with food. Retching has continued violently. A drug used for chemotherapy patients to ease nausea has been started for Josh. It is called Zofran and will hopefully help with the retching which may also help with his head healing by decreasing pressure during the retching episodes. The rest is just wait-and-see.

Josh is smiling a lot. He is choosing his books to read and loves when the child life specialist or the chaplain comes by with a guitar. Today, Josh did some standing and showed everyone how tall he is getting. We’ll try to get him standing more every day. Of course, Josh is still flirting with the nurses.

We are looking forward to a low-key holiday tomorrow. Grandma Ellen and Pop-pop Paul have visited with Josh this evening. Grandma Marilyn visited earlier this afternoon. I’m sure we’ll see more of Grandma Marilyn and Pop Bobby tomorrow or Friday. We are sure to see Aunt Wendy and Uncle Jeffrey tomorrow.

Steven and I know that Josh is healing. All of us together at home may become a reality next week, even if Josh has surgery. We can’t wait. Getting back some semblance of routine at home and in the community is a priority.

Thanks for your ongoing prayers and support. Have a happy 4th!! Save some BBQ for us.

Erica

Tuesday, July 02, 2002 at 08:18 PM (CDT)

Hi everyone! What a crazy day!. Let's start with Joshua. He had a good day and had lots of energy and smiles!!! :-)

His day started early with the removal of the lumbar drain. We spent the day in wait and see mode to find out if any leakage will occur near his head. So far none. That is typical Josh since he is scheduled to have the lumbar shunt put in tomorrow and now he might not need it. Of course if he was not on the schedule he definitely would have needed it. Anyway we are taking a cautious approach. On the flip side it did help us to have him so happy. However, his tone and spacticity are extremely high. He was like a ball of energy and could not sit still constantly moving and extending his muscles as tight as he could. All day he did this!!

I left him tonight getting ready for bed and with big smiles on his face.

Now onto the other news from the past 2 days.

First my Mom. The doctors told her yesterday that she will need to come back in to have a little more tissue removed as they need to get a clean area and do not have it yet. This is furstrating and upsetting to all of us but on the positive side once they remove the rest of the tissue that should be it. My Mom is taking it pretty well.

On Erica's side things went a little haywire today. First her dad threw out his back this morning. Then he was summoned to take his mother (Grandma Rae) to the pulmonologist. Well as of this moment she is in the ER at Mountainside hosptial with pneumonia, congestive heart failure, and emphysema. They are waiting for a bed to open up (hopefully) tomorrow and she will be admitted into the cardiac care unit. Now onto Grandma Ruth (Marilyn's mom), it semms that they are having a slight billing issue with her new nursing home. This is just one more thing that Marilyn has to take care of and she has been slightly busy with Joshua, ok a LOT busy.

Anyway the bottom line is that it is more stress that none of us need. So we ask again for you prayers and thoughts to Erica, Joshua, me, and our families.

As I said to someone today right now bad things happen in multiples of 10, not 3's. We hope you are all well and enjoy your 4th of July.

Monday, July 01, 2002 at 09:05 PM (CDT)

Hello everyone. Josh continues to be very happy and playful. He’s smiling and telling all the nurses that he loves them. They, of course, melt when he says that or even smiles their way. Josh continues to be in PICU with isolation precautions even though the infection is clearing. CSF cultures continue to be negative. WBC was 6000 this am – within normal limits. Josh’s hemoglobin is increasing to 9.9 – normal is 13 plus. He does not need a transfusion at this point. Poop and violent retching continues over the last couple days. CSF was leaking from his head again yesterday, but we didn’t see any today. His external lumbar drain will be pulled out tomorrow followed by close observation to determine if he indeed needs surgery for an internal lumbar shunt. We are realistic in expecting that surgery for the shunt will occur on Wednesday some time.

Upon hearing that Josh would need surgery, his cousin Simon stated after a short silence, “I think we should put those surgery doctors in jail!” He’s so concerned for his little cousin. :)

Discussion of a Gastro-Jejunostomy (sp?) will continue for tomorrow or Wednesday. We are hoping to talk to the GI doctors tomorrow to answer all of our questions. If it will help to get his body tolerating food again, we’re supportive. It will have to be placed with the help of radiology and possibly anesthesia.

After a full Monday, Steven finally felt what it’s like to be at the hospital during complete chaos. He is just now fully understands why I would complain of exhaustion, lack of time to use the bathroom, lack of time to eat, and general confusion. His head was spinning. And, I was there with him the whole time! From diapers to retching, baths, weight, doctors, nurses, PT, pastoral care, social workers, child life, etc., weekdays are exhausting. The TV doesn’t even go on.

FYI Our neighbor at the PICU, Christina, is improving. Before I left the hospital this evening, I saw her awake and writing notes to people. She is doing remarkably well. This very strong young woman will be okay. Please check in on her and her family at their new website www.caringbridge.org/nj/cb.

It’s late for me and I must go to bed. I go to sleep remembering the very wonderful feeling of Joshua giving me a hug and singing with me the lullaby I always sing him before bedtime. His smile and his kisses (wet, of course) are delicious. They sustain me, Steven, and many of you. We long for days at home together. We know they are coming, but we are anxious for them to arrive. Thank you for your love, support, and prayers. These things sustain us and help us have the strength to continue. More to come.

Erica

Saturday, June 29, 2002 at 08:54 PM (CDT)

Hi everyone. Overall, today was a pretty good day for Joshua. He slept through the night until 9am. After a bath, weight (26 plus pounds!) and some morning crankiness, he went back to sleep for a 2 hour nap. I didn’t know what to do with myself. It was wonderful. Josh woke up refreshed.

We attempted to raise the drain to see if Josh could manage the extra pressure of the CSF. No such luck. Within an hour, Josh had already started to leak out CSF from the top of his head. Dr. Fried was informed. The new plan is to keep the drain as it is until Monday at which time he will clamp it. If Josh can manage for the day, the lumbar shunt will be reconsidered. If he can’t, the surgery for the internal lumbar shunt will be scheduled for Tuesday or Wednesday. Odds are in favor of the latter option.

Good news! I think Josh did not retch once today. It was a nice break for him. But, Josh’s poop continued today. We’ve ditched the blue food dye because it is contributing to the irritation/rash on his tush. The dye didn’t come up during Josh’s retching, so his retching MAY not be reflux. Josh still may be refluxing, but his motility is rather rapid, so the blue food dye is out of his stomach pretty quickly. We are using Butt Paste on Josh’s tush liberally to heal and protect. Yep, it’s actually called Butt Paste.

Steven went to the Yankee/Mets game today for a diversion with some friends. He had a really good time being among those with more typical lives. Grandma Marilyn, Grandma Ellen, and Pop-pop Paul visited Josh today (and us too) for the highlight of the day.

Please, continue to pray for our PICU neighbor, Christa (Donna’s daughter), who was in a very bad car wreck. I also ask for prayers for Josh’s friend Patrick who is trying to stay out of the PICU at St. Barnabas Medical Center.

Your ongoing love and support helps us keep our strength. We are tired; actually we are exhausted. We can’t wait to get through this crisis. Josh will get through this. We will all be home in the foreseeable future. Josh knows that he is very loved by his parents, family, friends, and many many people who have come into his life. His smiles continue to light up his room and our lives and, I hope, yours.

Erica

Friday, June 28, 2002 at 08:39 PM (CDT)

Good evening! Another interesting day at HUMC. Last night (Thursday) Joshua slept well, 12 hours straight and woke up today at 8:30 am. Not a bad night's sleep. However he did have some CSF leakage around his head.

His attitude and mood where pretty good in the morning. He took a late morning nap on my shoulder for about 30 minutes. I must admit that I loved it porbably more than he did. With the decrease in drainage of CSF Joshua acted much like himself.

We did receive a suprise vistor today when Ruth Kennedy from HUMC Pastoral Care came by. Ruth is a great friend and loves Josh very much. She recently underwent surgery and while back at HUMC for test decided that she had to visit him. We are very happy to see her up and around again.

Erica slept in a little this morning and arrived in the late morning after a good night's sleep. It was fun having lunch with her during the week and enjoying being the 3 of us in the hospital.

Later in the day Dr. Fried paid a visit and said that he wants us to raise the Lumbar drain 5 centimeters every 24 hours, to see how Joshua reacts. After watching this for a few days we will see how his head is and then decide if Lumbar shunt surgery will happen. If it does happen we are expecting it to be Tuesday.

Retching is still a problem and Joshua is retching violently several times a day. I feel so bad because he is in so much pain during the process to relieve the pressure.

One last note, I ask you to pray for a girl in the next room, 17 years old, Donna. Donna entered HUMC yesterday afternoon after being hit by 2 cars in the car that she was driving. This is a very serious situation and this girl is listed as critical and at the moment is day-to-day.

Thanks again to all of you for your wishes.

Steven

Thursday, June 27, 2002 at 08:12 PM (CDT)

Hey everyone. Sorry no update yesterday. Things are always interesting at the good old Hotel Hackensack. Joshua seems to be improving with regards to the infection. His cultures continue to be negative. WBC count is down to 7000 today; back to normal. Hemoglobin is up to 9.4ish, so no transfusion needed today. Heart rate during sleep continues to come down to his normal numbers. All good signs for healing.

Tuesday night, Josh decided it would be fun to be up for much of the night playing. From 1am to 5am, he was in his crib playing with his stuffed animals and talking to the nurses who came in the room to check on his IVs. Needless to say, Steven was in a pretty bad way again yesterday. Josh started the day at 11am, when he finally decided to join the rest of the party in the PICU, with smiles. It was noticed, however, that his head was leaking CSF again. Josh then started to retch violently which increased the CSF leakage exponentially. I was soaked, he was soaked, and the bed was soaked. We were hoping that the drain would be clamped and/or raised today. Instead, the drain was lowered so that he could drain 20 cc per hour. His head was also ‘sealed’ with a type of glue on a cotton ball covering the areas of concern.

Josh did do some good stuff yesterday. He sat up for a while in the crib and did some weight bearing through his arms. He also smiled and talked a lot. The retching was really the only thing that slowed him down.

He slept through the night, fortunately for me. Josh seemed to wake up on the wrong side of the crib, though. He was miserable. He was bathed, weighed (and he’s about 26 lbs. now), and put right back to sleep. He again woke up miserable. Josh was lethargic, moaning, screaming at times, and generally feeling yucky. The suture line on Josh’s head is a little caved in. After a very tense few hours, Josh had a CT scan this afternoon to be sure that there was nothing going on in his head to cause the change. Good news is that the CT scan showed improvement from the last scan. The drain was raised and he is doing much better. Josh was probably draining too much CSF off his head.

Now comes the options for optimal healing. Keep in mind that it is imperative that the suture line on Josh’s head heal asap. The three options that Dr. Fried presented are a new lumbar drain when the current one needs to come out, a permanent shunt in his head, or a lumbar shunt (different than the current external drain).

The latter option is the best choice for Josh and will be placed on Monday or Tuesday. This lumbar shunt is inserted at a similar point on Josh’s back as the current drain and wrapped around to his flank to his stomach for drainage. The flow is controlled by the type of tubing used for the shunt. This type of shunt is operational for a few months which is the amount of time that we need to allow Josh’s head to heal for the suture line to close without added pressure and to allow his head to start reabsorbing CSF on its own. The procedure is a surgery with anesthesia. Josh will have another culture of his CSF done tomorrow, prior to the surgery to be sure that he is healthy enough for the procedure.

We are also considering feeding options. Josh is still not doing well with retching and pooping. The option that is on the table is a jejunostomy. This is like his gastrostomy but feeds directly into the jejunum, part of the small intestine. It is used when retching is acute. We’ve only just begun the conversations about a j-tube, so we’ll update as we know more.

Steven’s mother, Ellen, is doing well. She’s just a bit sore at this point and is back to doing things today. The surgery was successful.

Pop-pop Paul’s birthday is today. Joshua sang the “Happy Birthday” song with big smiles for his Pop-pop.

Steven’s grandma, Pearl, is back home from her trip to the hospital and already made it to the hair dressers. She’ll be fine. She’s treating an ulcer in her bowels.

Steven and I are surviving day to day. We’ve begun having arguments with G-d in the last few days as the roller coaster moves along. Tears are flowing more than they had been. But, we’ve also been laughing in the midst of it all. The other families around us and the doctors, nurses, etc. have been incredibly supportive. Steven and I will be able to support each other differently now that he will be at the hospital more. We’ll make it.

Josh went to bed knowing that he is loved. He smiled, gave kisses and told me that he loved me. He loves his Daddy, too. We get our reward in kisses, smiles, and love. That’s enough for now.

Erica

Tuesday, June 25, 2002 at 08:58 PM (CDT)

Good news continues. Josh is still getting stronger everyday. He slept well through the night and didn’t wake up until after 10:30am. He’s certainly healing from surgery. The latest cultures have not grown, so the infection is getting much more under control. The ID doctor says, “He’s turned a corner.” Josh is very happy and much more talkative. He’s even more content lying in his crib for a little while on his own. Smiles are everywhere!!

Steven reported yesterday that his WBC count is continuing to come down and his hemoglobin is starting to slowly go up. The hemoglobin is now in the 8s. Finally, the bone marrow is joining the healing party. Josh has also gained some weight and is now 26 lbs 2 oz. All good things!

The lumbar drain is still in place and in the same position as it had been. It continues to drain about 5 to 10 cc each hour. Dr. Fried will likely clamp and/or raise the drain collection receptacle tomorrow to see how Josh handles the added pressure. If all goes as it should, then Josh may be able to go home sometime next week. If it doesn’t, Josh will need a new drain placed to try the process again because a lumbar drain can only be placed for 7 to 10 days at a time. We hope for the best but are ready for the worst. Fewer surprises are better.

Dr. Fried expressed his pleasure at Josh’s healing, the good color of the CSF that’s draining, and the shape of Josh’s head. He said that he almost forgot that the titanium mesh was there because his head shape is so good. The mesh really is helping everyone to see Josh’s healing more positively. Dr. Fried had some dermabond put on Josh’s head to try to stop some of the continued leakage of CSF. Let’s see what tomorrow brings.

Seizures are continuing and are getting more intense at times. GI function is pretty poor. We are not getting good use of the blue food coloring that we are putting in Josh’s stomach because his transit time from stomach to his diaper is rather fast. The food coloring is in his stomach for less than an hour! We still don’t have answers of whether the vomiting/retching is bringing up stomach contents. Physical activity is minimal; however, he started PT again this week.

Music therapy has started at the hospital with the hiring of a new Child Life Specialist, John, for the neuro patients. This guy has an incredible way of calming Josh and engaging him. His voice is amazing. I have to share this really touching moment: After John finished a song, Josh stuck out his bottom lip and started crying. I knew that Josh enjoyed the song while it was being played and sung, so it wasn’t an issue of unhappiness with the music. It turns out that he wanted more music. I asked if he wanted more music and he stopped crying. I told him that he needs to say, “more music, please,” if he wants more so he smiled big. My big boy made a very conscious decision, and he let us know what he wanted. It was so touching. I’m so proud of him. J

Steven is not in the best way today. It was a tough one. It’s even worse being in the hospital and having to deal with such a huge life event of losing a job. This will be a busy week, though; and he’s looking forward to going to the Yankee/Mets baseball game this weekend with some friends.

Grandma Ellen is home this evening from her lumpectomy surgery. She’s rather tired and sore, but doing well overall. She’ll plan to rest for the next couple of days. We’re all glad she’s ok and the procedure is over. We hope to see her soon to give her human healing medicine. Great-grandma Pearlie is visiting the hospital as well. She was admitted to Saint Barnabas last evening. She already wants to go home, so she must be feeling better already. She’ll have a colonoscopy tomorrow and will likely then go home.

Lottery tickets have been purchased. We hope that our luck might change with it.

We’re very tired and want to be together as a family at home. Waiting for it is tough. Josh is a strong little boy and helps us cope every day by bathing us in the glory of his happiness and smiles. The hugs and wet kisses help a lot too. Our happy little boy went to bed knowing that his is loved.

Thanks everybody for your prayers and support for our whole family. The love that we feel is overwhelming. We are looking forward to reporting only good news as soon as possible.

Erica

Monday, June 24, 2002 at 08:10 PM (CDT)

Hello all! Let's start with some good news! Joshua looked really good today! He was talking, laughing, and generally in good spirits. The main problem is retching, a lot of it. So we are working with the doctors on that issues by injecting blue dye into Joshua's stomach to see what happens when he retches. Sounds fun eh?

Overall though we are happy to see Joshua engaging more. Also his white blood cell count is down to 11,000. What an improvement from last week when it was 24,000. The doctors are happy with Joshua's progress and feel we have turned a corner.

Now to other news. Today was my last day at Kamoon. I am currently looking for new positions in sales. I wish things could have worked out at Kamoon but it did not and I left as of 5 PM today. The timing could not have been worse but I am trying to focus on getting a new position now.

Finally I am asking all of you to pray for my Mom, Grandma Ellen. Tomorrow she is having breast cancer surgery (lumpectomy). She is very nervous and we are too. We are all praying for an easy procedure and quick recover. After surgery shhe will start radiation in August for 5 weeks straight 5 times a week. Please keep her in your thoughts tomorrow as we deal with another challenge.

Thanks again to everyone for your thoughts we had many visitors this weekend and it really helped pass the time. We are trying to stay positive (it's tough some times) and appreicate your support and love.

Steven

Sunday, June 23, 2002 at 09:12 PM (CDT)

Hello all. I’m just sitting down to read all the beautiful guest postings on the site and am incredibly moved. The emails have been wonderful. And, the Disney message board is remarkable. Josh is being touched by the love and caring of so many people all over the country and the world! I am astounded. THANK YOU. THANK YOU.

Joshua had a much better couple days than last Friday. He was much more alert and talkative. He even told us some of his stories. Or, maybe he’s repeating some of the ‘fractured fairy tales’ that Pop has been telling him. (My dad tells Josh the story of the 3 bears in a way that incorporates pieces from other fairy tales and is never quite complete. What a hoot!) He’s still quite unhappy to be alone but is not as miserable as he had been.

Josh’s head is no longer swollen, so we can see the actual shape it is now. Dr. Fried did an amazing job shaping the titanium mesh to his head. Seeing his head without the cave-in that it would have had makes us all feel that this will improve soon because he still looks like Josh without an enormous defect. The lumbar drain is doing its job draining about 10 to 15 cc of CSF an hour. (FYI: 5cc = 1 tsp.) We will try to raise the drain collection bag mid-week to see if he can start to handle the CSF himself. During this process, though, infection can be monitored from the CSF. The main thing is to keep pressure off his head to allow for healing and prevent him, literally, from springing a leak, which could then be another source for infection. His head looks like it is healing. It is much less red. This staph infection, which is also called meningitis because it is an infection of the CSF, will take a long time to treat, so we need to be as patient as possible.

GI wise, Josh continues to poop copious amounts and retch often, sometimes violently. Our concern for the longer-term effects of this on his tummy and whole GI tract is heightened. And, a question of the time it takes for the parts of the system to start to atrophy are present. He seems also to be refluxing a bit more. Seizures have not been as bad as they were on Thursday and Friday. Josh’s weight is somewhat stable on the TPN at 11.5 kilos. Josh may need a transfusion tomorrow depending on his hemoglobin levels in the morning. Fortunately, Marianne Shulman left a blood donation for Josh.

Josh is definitely doing better at this point but will likely stay in the PICU until his lumbar drain is removed, as long as the PICU census stays low. We appreciate the watchful eyes of the everpresent nurses and doctors. Joshua changes quickly at times, and when he crashes, it happens even faster. We know Josh is not out-of-the-woods yet, so we want to be able to catch things that pop up as soon as they happen. There’s no rush up to the general peds floor, as far as we’re concerned.

Steven and I enjoyed Shabbat dinners for the last 3 weeks care of the Friendship Circle and people wanting to help us out. It is a wonderful thing to be able to have this even more special time during the week as a family. Thanks to Toba and Zalman Grossbaum for helping to make this happen for us.

We’re sorry that we’ve not been able to return some emails or phone calls. Please understand that it is very difficult to make calls from the PICU, when we get home it is late and we’re pooped, and emotional exhaustion takes its toll. The thoughtfulness and support and prayers from so many people keep us going. Through this challenging time of complete turmoil in our lives we still know that tomorrow will come. One day at a time is the only way to get to tomorrow. Let’s hope it is a better one for Joshua, for us and for our families.

Josh went to bed knowing that he is loved and he will awaken tomorrow knowing that his is loved. That’s still the main portion of my prayers for Josh. Steven and I remain steadfast in our love and support for eachother as well. There's no better partner for this experience. Our family is blessed.

Erica

Friday, June 21, 2002 at 09:21 PM (CDT)

Please do not mind my rambling, but there’s no other way to tell the events of the last few days. Last Josh’s WBC was checked, it was down to 14,000. Definitely normalizing. Temperatures are also normalizing. The drain from Josh’s head was removed on Thursday afternoon successfully. Josh didn’t like having to be held down and let the world know about it. He was fine once he could be held afterward. No transfusion needed again as his hemoglobin was in the 8.0 region. Marianne Shulman donated blood for Josh just in case he needs another transfusion. Thanks Marianne!

Thursday, Steven got news that…well…his employment status is rather unclear. Yep, while his son is three days post/op and lying in the PICU. Needless to say, it was not a good day yesterday.

Josh slept well last night with his sleeping heart rate normalizing as well. Josh awakened this morning with very apparent signs that his head is seeping CSF through his sutures. I urged the nurses to call the neurosurgical resident regarding the leakage. Just as I got Josh washed this morning, Pop Bobby arrived so that I could shower this morning. Steven had an early appointment. However, while I was upstairs in the shower, the resident came by to peek at Josh’s head. Well, a couple stitches were needed and needed to be done immediately. Much to Pop’s dismay, he became an assistant to Dr. Raj. Pop tried really hard to urge him to wait until I had returned. Incredible support was given by Pop! The sutures were placed and when they were done, it was encountered that Josh’s head was spurting CSF. The hope was that it would stop with the sutures. Guess what? It didn’t. Josh’s head began to swell ever so slightly and seep CSF ever so much. Dr. Raj returned this afternoon and let me know what the best bet for helping Josh was. Josh had a lumbar drain placed in his lower back to help ease the pressure of the CSF throughout his body. The theory is that Josh is unable to reabsorb CSF right now secondary to the infection. The CSF therefore has nowhere to go except to the skin, sub-galeal (sp?) membranes between the bone and scalp, and continue the cycle of the infection’s growth. The drain is placed in the lower lumbar area because it is farthest from his infection site. Increased infection risks exist if continued tapping of Josh’s head is necessary. Josh needed sedation for the procedure and came out of it giggling. Propophol makes Josh very funny.

The day was further enhanced by lots of poop and retching. Mind you, he’s not getting any food or fluids, other than meds, through his g-tube. He is miserable. His tush can light the night sky again. Dr. Kogan (GI) agrees that we cannot put anything in his tummy until it settles at least a little. We are hoping that he will be able to handle a little something once the Rifampin (antibiotic that also makes him pee orange) is stopped sometime next week. Meanwhile, the Vancomycin levels continue to be monitored closely with doses adjusted almost daily. Getting rid of the bad bug in him is priority one even though his gut suffers. The docs are saying Josh can stay on TPN as long as is necessary, so we are assured that he is staying nourished.

Josh also had some bizarre episodes of possible altered neurological status, elevating temperature, mottled skin, and shaking. His heart rate is also fluctuating. Josh is being watched very closely. Things have a way of changing quickly.

All of Josh’s doctors are very worried about him right now. Josh is a really sick little boy. Dr. Fried came by late in the day. The covering neurologist, Dr. Thompson, was by a number of times. The intensivists have been to visit often. And, Dr. Kogan says she is praying for us.

Grandma Marilyn is rather wiped out from the week because she’s been with me for most of the exciting events. We are all grateful for her love, support, hugs, and laughter. Pop Bobby has been to the hospital twice a day for the past few days to help out as well. Steven and I can’t do what we do for Josh without them.

Staff at the hospital are supportive and loving to us, as well. They are all trying to help us get a little relief and help Josh to heal. Their caring makes living in the ICU and the hospital a bit more bearable. These people have become much like family to us as they are sharing in many of the events of our family.

FYI: Gendel family statistics.
Number of days in the hospital since last June 11, 2001 = 145.
Longest admission = 45 days August to September

We wonder what is next for Josh. How much can one little boy handle? He is remarkably strong. Josh continues to smile and tell us he loves us in his way as we tell him that we, and lots more people, love him. Steven and I have never felt this much fear, pain, and exhaustion. Every cell seems to hurt in our bodies. He says, “Picture a person being hit by a freight train…three times.” The only way we are surviving this one is one hour at a time. We will miss seeing Steven’s extended family at the Cousin’s Club Party tomorrow. We miss being part of some semblance of normal life. It will surely be better at some point. Our luck must change. This very dark cloud over us can’t hang around forever. Better days are coming. We’ll get there. Time to buy a lottery ticket?

Josh went to bed knowing that he is loved. We go to bed a bit more unsure of what tomorrow will bring but very hopeful that it will be better than this past week. Please continue your prayers for Joshua and for us. It makes a tremendous difference in our lives.

Erica

Wednesday, June 19, 2002 at 08:13 PM (CDT)

Frustrating, that's a good word isn't it? I feel that it is the best way to describe our current state of mind. We certainly did not plan on being back in the hospital so soon and for what might be 4-6 weeks on top of it.

So we wait and try to keep our hopes up.

Joshua is starting to feel a little better. He only wants to be held right now and is very happy when he is and cranky when he is not. Sounds typical.

Dr. Slavin (aka Kevin) of infectious diseases came by and was pleased with how Joshua's head looks. Also Joshua's white blood cell count has started to drop down to 18,000 from 24,000 last Friday so the IV antibiotics are working but it is a long course to success.

We tried to give Joshua some Pedialyte today however Erica was dealing with a lot of retching all day and much poop! Thos antibiotics are killer on the stomach.

Erica did have a visit from Marianne Shulman and she was glad to see her and spend a few minutes together.

Other than that not much to report but we will keep updating as much as possible. Exhaustion has crept in early this time since we did not get time to recover from the grid surgery stay and are looking at a long process again. Thanks again to everyone who takes the time to read the site. We really appreciate it.

Steven

Tuesday, June 18, 2002 at 09:17 PM (CDT)

Good evening everyone. First a huge thanks to everyone for your support as we struggle to get Joshua healthy. Today, Joshua started to turn for the better, albeit, slowly. He slept well last night and only woke up once. So Joshua has 12 good hours to start the day.

His head is draining slowly but is filling up the bag, by Thursday they expect to remove the tube from his head. Joshua napped this morning, thanks to morphine and Tylenol, however we are weaning him off the morphine and he now need it only 8 or more hours between doses. Fevers still exist with Joshua running at 99 to 102, this all part of the infection that is inside his body.

This afternoon we where able to hold Josh! He was smiling more and seemed ready to get out of bed. Nothing feels better than picking him up, holding him, telling him that it will be ok and then watching him give me the hugest smile and kisses. In between that words of I love you, makes for a great afternoon. Erica also held him for a while and received the same treatment.

Poop still coming in copious amount and now due to one of his antibiotics his urine has tuned this wonderful color of glow in the dark orange. Ok, sing with me now, “There are so many colors in the rainbow, so many colors in the morning sun, so many colors in the flowers and I (Josh) pee and poop everyone!” Sorry for the bad humor just my way of breaking the monotony of being here.

Anyway, I sent Erica home tonight. She was hitting a brick wall and the extra night of sleep at home will certainly help. Dr. Fried came by and was pleased with Joshua’s progress, along with his attitude. He is talking about sending us home next week however, infectious diseases and gastro will probably keep us longer due to lack steady feeding in his stomach and the bad nature of this infection. Put it this way the infection is so bad and can cause problems that, to enter Josh’s room you must wear a gown and gloves, upon leaving hand washing is required.

Well he fell asleep on his stomach as usual and should be out for the night with all of his meds and some morphine on board. Thanks again for all of your thoughts and we look forward to being home as a family whenever that happens.

Steven

Monday, June 17, 2002 at 08:35 PM (CDT)

Before I pour myself into bed, I’ll share a bit of the day. Overnight, Josh completed a transfusion and slept fairly well having had a very nice dose of Benadryl. His head continued to swell to the point that when we saw him this morning it was shiny and swelling near his left eye. We knew that there was lots of fluid in there again, more than the previous drainage amounts. Dr. Fried was in early, confirmed the plans and checked on Josh. The pediatrician was also in to do the daily check. We then heard that Josh had increased hemoglobin to about 10 (good news) and has a very bad type of a resistant staph infection (obviously, very bad news). The long name is methacillin resistant staphylococcus aureus, or MRSA. This is a staph bacteria that exists all over but is not uncommon in hospitals. It is bad because it is resistant to all antibiotics except Vancomycin. Fortunately, he is already on it since Friday. MRSA also means that Josh will have his own room for the remainder of his stay at the hotel and all visitors and staff to the room will need to wear gowns and gloves to be with him. Isolation is no fun, but at least we should have a bit more quiet time to heal.

Josh went down to surgery just after noon. He had two procedures done. The first was by the general pediatric surgeon to place a central line – Hickman catheter - in his chest for better access to veins and blood draws. That procedure was successful and took about an hour. This will also allow the PICC line to come out of Josh’s arm to decrease another infection risk. Dr. Fried’s portion of the surgery concluded just before 4 pm. He told us that it was definitely a very bad looking piece of bone that he removed. 350 ml of fluid was drained from his head, as well as some nasty looking slimy stuff! Fortunately, the durra, or covering of the brain itself, was intact and looked good. This procedure was the only option to help Josh ditch this very bad bug. Even if we had tried the other option available, it would have just delayed this surgery and put Josh at more risk from having the bad bone remain. Dr. Fried also put a piece of metal mesh over the area where bone was removed to avoid the caved-in look of his head but also to protect his brain during the time before reconstructive surgery will take place. Josh will not be ready for reconstructive surgery for a couple years until he grows more. The infectious diseases, ID, folks are concerned about he mesh as another site of possible infection but understand the need to protect the brain. Dr. Fried also expressed is heartfelt apologies that we had to go through this.

Josh got to the PICU at about 4 pm and was a bit miserable for the following hour. He needed lots of morphine in the OR and in the PICU to be somewhat comfortable. The anesthesiologist said that he needed an adult dose of narcotics. He was pretty miserable until about 6:30 when he smiled at Steven a bit. Aaahhh. What relief. Josh will be okay. The nurse drew blood and found his hemoglobin to be alarmingly low at 5.9. He is getting his second transfusion as we speak. Josh’s bone marrow is not quite working as well as it should from this bad bug. More transfusions could be to follow. His potassium was also very low secondary to his losing lots of CSF, cerebral spinal fluid, during the surgery. He has already had that replaced. Josh has an external drain in his head to keep the swelling down and it is working to do just that. The drainage looks copious, but Dr. Fried has reassured us that it really is not too bad. The drain will be in for about two days. He will then remain in the PICU for another couple days until going back upstairs to the general pediatric floor. If all goes really well (I always have my doubts about that) Josh could possibly come home next week on IV antibiotics. Keep in mind, Josh never does things really well and his stomach is not working. Let’s see what his stomach will do over the next week. For now, we are trying to make ourselves comfortable at the hospital.

Thanks to everyone who is supporting us with company, Shabbat meals, cards, calls, emails, web posts, web hits, hugs, and positive thoughts and prayers. We cannot do this alone. We are only this strong from the support of so many people. We will all get to tomorrow one hour at a time. Josh went to sleep tonight knowing that he is loved. I go to sleep tonight knowing that Josh can now mend. More to come.

Erica

Sunday, June 16, 2002 at 02:25 PM (CDT)

Happy Father’s Day, everyone. Things are progressing in the wrong direction today. Josh has his highest fever again today, 102.4 degrees. We took down a compression bandage from yesterday and found his head to be just as swollen as Friday, if not more. Dr. Fried came in quickly and tapped Josh’s head again. Today, he took out 140 cc of the same yucky looking fluid. There was still some left in this time. But, as I write this, Josh’s head is continuing to swell again. Josh was much happier with his head tapped.

The cultures from the last tap were read today and are positive for staphorious. That is a bad staph infection. The Vancomycin should be enough to cover the infection. The Ceftriaxone was discontinued today as it is not needed. Josh will need to be on IV antibiotics for the next 4-6 weeks. It is definitely something that can be managed at home at some point.

The rest of Josh’s blood test issues: He is very very anemic, as determined by hemoglobin decrease today to 6.5, and he may need a transfusion today. His WBC count continues to increase by a bit. He is more hydrated, though.

Poop continues in copious amounts. Feedings are not happening. Retching is acute and frequent.

Next steps: Josh will have neurosurgery tomorrow to take out the bone flap. It is an emergent type surgery because the flap is harboring bacteria that is very very difficult to treat by antibiotics because there is no blood flow to that bone area. This is the fastest way to ditch the infection and help Josh to be more comfortable. Once the flap is removed, Dr. Fried will put in a wire mesh to help keep his head shape. Without it, Josh will look deformed with a caved in area on his head. This whole procedure could get Josh out of the hospital in the next couple weeks. If this is not done, the other option is to insert a catheter to that area of his head for almost continuous irrigation with iodine and antibiotics. This process could take many many weeks, mainly at the hospital. Even with it, there’s no guarantee that the treatment would get rid of the infection. We agree that getting rid of the infection in the fastest way possible is best for our nutritionally compromised child. One more thing. Josh will have a more permanent line placed – a broviac or a port-a-cath.

We’re both very upset that Josh is so sick, and only wish that he heals as quickly as possible. We’ll update more tomorrow, if possible.

Erica

Saturday, June 15, 2002 at 02:27 PM (CDT)

Hey everyone. Needless to say, we are not thrilled about being in the hospital again. The week was filled with ups and downs and ends on a down. The week began with Josh's IEP meeting with the school district. We are thrilled that Joshua was able to get everything he needs for the upcoming year: home instruction and therapy through the summer, school in Fairlawn at an incredible program, bus transportation, and a 1:1 nurse. The meeting could have been a nightmare but turned out better than any one of us could have ever expected. Finally, that's done. Josh also showed us new gains in development; he learned how to grab a cup (from a set of stacking cups) and bang it on his tray. The learning took minutes, the fun lasted much longer. He smiled widely after he had accomplished it. We were beaming.

Josh's head looked worse and worse as the week progressed. The right side of his head on the main incision had gotten quite red and the swelling on the left increased daily. We saw Dr. Fried, the neurosurgeon, on Thursday. He took out the sutures from the exit sites from the grids and took out the dissolvable sutures from the right side of the head. At that point he felt that the swelling was normal and would get better. Even at that visit, the swelling was still somewhat soft. He prescribed an oral antibiotic for what was thought to be a surface infection.

Diarrhea began to increase on Thursday as Josh's feeding and GI issues continued to worsen. So, Dr. Kogan, the GI doc., saw him on Thurday at the neurology office. She ordered poop tests and tested him on the spot for blood in his poop. It was positive. We weren't surprised because his stomach is working overtime, but the concern is that he has a bad bug like C-diff, which he had last fall. Also, Josh's blood work, from this past Wednesday, showed that his hemoglobin was dropping significantly, meaning that he is getting more anemic. Iron was to be started Thurday night.

While at the doctor's visit, Josh tried to help holding is feeding pump, and it dropped, hitting the floor on the right angle to kill the motor. This was, of course, an hour before his next feed was to begin. I called his medical equipment company immediately to get a pump delivered to us at the doctor's office. What an ordeal. They could not get us the same kind of pump, but another that they claim is portable. Hah! I can barely hold it and Josh at the same time. Further, this medical equipment company cannot get another pump for an undetermined amount of time because they have bad financial standing with their suppliers. I even called the manufacturer directly, and they said they could overnight a new one for the next day if the medical equipment company called to request it. They couldn't get their act together to make the call. We will now be dealing with a new medical equipment company who has already delivered a new pump to us here at the hospital. That issue is almost completed. Once we return the equipment that will not be used, we will be finished. Phew.

On to the big stuff. Josh's white blood cell (WBC) increased significantly from Wednesday to Friday early morning. It went from 8000 to 24,000. The WBC count is the indicator of an infection. What a jump. Something is definitely happening. He continues to have a fever, but not as high as when we first brought Josh to the ER. The swelling on his head had also increased to the point that it was hard to the touch - "tense". Dr. Fried drained it yesterday afternoon and took out...wait for it....200 cc of fluid!! That's just short of 6 oz. It didn't look good either. The neurosurgery resident entered the room during the procedure and said, "Yech." Then he said, "Oops. You weren't supposed to hear that, Mom." Luckily, I already knew it wasn't looking great. The CSF that was removed was sent for cultures, so we'll wait for the results as they become available. The initial gram stain already is positive for something, so it is likely that something is there.

The ID (infectious diseases doc.) visited yesterday afternoon and changeed the antibiotics for broader coverage. (One is Vancomycin again. Unfortunately, it was not in his chart that he needs to have the drug administered over 2 hours due to Red Man's. So....he had Red Man's last night again where his heart rate jumps dramatically and he turned red. Benadryl was then administered and he fell asleep.) He thinks that Josh likely has a staph infection. It may be one that can take a while to treat. We expect that Josh will be on antibiotics for many weeks. With the PICC line, we are able to administer antibiotics at home. Next, the source of the infection must be determined - is it skin or bone or other? Worst case scenario is that the infection is in the bone and it may then have to be removed. We'll see as time moves along. We also need to see how and how quickly Josh responds to the antibiotics. Keep in mind that Josh is nutritionally compromised and has been for most of the year, especially the last month.

This brings us to the next big issue. Josh's stomach is already responding adversely to the antibiotics. He's got copious diarrhea and is back to almost full TPN. That puts us back where we started last admission in trying to get his gut functional. Thankfully the PICC is placed and functional. We are going to have to take this one day at a time.

The overwhelming sentiment of everyone is that this sucks. There's no other way to say it. Steven and I hadn't even gotten used to being at home. We know things could be worse, but, still, this sucks. We are doing our best to stay sane while waiting for more information. We are also trying to stay sane while recouperating from a full night of no sleep and lots of adrenaline pumping. I slept last night at home and Steven will go home tonight. We are also sleep deprived from Josh not sleeping well over the past week, not to mention the last admission. We are even starting to doubt that we will ever catch up on sleep. Let's hope it will happen sooner than later.

Please pray for Josh as he has a bad bug in him. We hope for quick diagnosis and treatment. We really appreciate all the help and support that we have been given during the last 9 days at home and again here at the hospital. I'll update as we know more.

Happy Father's Day to everyone.

Erica

Friday, June 14, 2002 at 07:42 AM (CDT)

Good morning everyone! So we are back in the hospital. Joshua woke up multiples times to retch and then at 1:30 AM woke us up with a fever (102.4) and his heart rate was at 200 (beats per minute). So off to thhe hospital.

They did a blood culture and found a very elevated white blood count, which means an infection and the left side of his head lookied very swollen so now we are back in the hospital in room 3507, at least it is private. Anyway we will writer more later but that is the short term update. Needless to say both Erica and I are tired from being up all night with Josh.

Steven

Wednesday, June 12, 2002 at 11:43 AM (CDT)

Hello all. We’ve been home for a week now and are still thrilled to be home. We are still quite exhausted but hope it will get better soon. Joshua is not sleeping well at night. He is awake often and has been experiences GI problems since very early Saturday morning. He wakes up early and has multiple episodes of acute retching. Further, his residuals (food left in his stomach) are tremendous. Yesterday, we needed to back off his feeds and give him straight Pedialyte again. This unfortunately will not get Josh off the TPN and finished with the PICC line any sooner than we had hoped. Let’s see what today brings. We’ll see Dr. Kogan tomorrow

Neurologically speaking. Josh is healing, BUT his swelling has increased over the last two days and one side of his head is a bit red. Josh had a fever a couple days ago and is being checked multiple times a day for further fevers. Joshua is still playful and is improving his interactions with people and his toys. We’ve had a new nurse and other daily nurses, so Josh is not too pleased about not holding Mommy. He gives everyone lip and hollers “MOM!” What a very cute, very manipulative, little boy. Our main concern now is infection with his head. We’ll find out more at the post/op visit to Dr. Fried tomorrow.

Josh’s tone is much more controlled. He’s even able to sit in his high chair for extended amounts of time without completely losing it. Seizures continue but at decreased frequency. Keep in mind that we are not doing much with Joshua outside the house. Although, Josh helped his friend Jenna celebrate her 3rd birthday this past Sunday at the Turtle Back Zoo. It was a beautiful day. Josh is making it known to all that he is not at all happy sitting in his stroller/chair. He is having difficulty managing his body temperatures, so the sun was not the most fun for him. We had to leave when Josh only wanted to be held.

Steven is back at work in full swing. He’s very busy and was away last night. (Guess who gets night duty tonight?) Fortunately, work waited to be very busy until this month rather than last month.

We are realistic that Josh’s health is variable these days. Let’s hope we’re home through Josh’s healing. Thanks everyone for your continued support as we try to get our lives back into some semblance of a routine. We’ll update after the next MD visits.

Erica

Friday, June 07, 2002 at 08:13 PM (CDT)

Hey everyone. We’re HOME!!!!!! Can you tell that we’re a bit excited? We arrived home on Wednesday night at about 7:30pm to quickly get Josh meds, TPN, and to bed. He was a bit unsure about being in his crib, but he fell asleep hard. Joshua had been excited all day. He knew we were going home. Josh was belly laughing throughout the hospital. He did not even have too bad a time in his stroller ride out to the car. We medicated Josh for the car ride. He did not do too badly until we were about 5 minutes from home when the seizures got to be bad. Lot’s of messages have welcomed us home include the delivery of a Shabbat dinner and challah and wine. Okay, we actually got three different challahs from different people. What a wonderful welcome home. French toast anyone?

Joshua came home with a low dose of one of the anticonvulsants that he had previously been on as it also helps with spasticity and clonus. He also continues to be on Zanaflex and Baclofen for muscle tone. His tremendous spasticity is vastly improved with these drugs. The drugs also make Josh sleepy, so he gets them around bedtime. He takes them in the morning to, so we are guaranteed a morning nap at this point. Josh is up to full strength feeds during the daytime. Retching has increased, so we’ll have to monitor how the feeds are affecting it. Nighttime feeds will continue at ¾ strength for a bit longer until the time at which his TPN will decrease.

Joshua is surprising us with his understanding of lots of new things. He is following commands. He is making more choices. He is sooooo manipulative. Josh is getting used to playing by himself again; he’s a bit clinging to me. Fortunately, Josh’s nursing schedule has filled to the point of at least some hours every weekday. Hooray for me. I’ve already put away most of the stuff we had shlepped to the hospital. All the mail has been sorted, and the important stuff has been taken care of.

We are all catching up on sleep. I’m sleeping very hard. Exhaustion is an awful thing. Steven is not sleeping so well. Exhaustion is an awful thing. Josh is sleeping hard as well, until his very wet or leaky diaper wakes him. Josh is getting so much fluid at nighttime from the TPN and the overnight feeds that his diaper explodes. We’ve had to resort to putting a maxi pad in his diaper to help with the issue. (Silly? Maybe. But it’s better than a diaper on his head.)

We’re back in full swing at home. We will be meeting with the school district on Monday to write his IEP (Individualized Education Plan) and arrange for services through the school district. Hopefully, therapy services will start next week. We have not decided when to start Josh back to Hippotherapy or MEDEK. Music will probably need to wait until the PICC line is out. We’ll see.

That’s all for now. We’ll update soon.

Wednesday, June 05, 2002 at 03:52 PM (CDT)

Here is a quick update! We are going home today!!! Erica did a ton of coordination with nursing agencies, doctors, infusion therapy, etc., and we should be leaving HUMC in the early evening.

Where do we go from here? That is the next challenge. We will updated the site with more information however, Joshua will be going home with the PIC line and it will remain for a few weeks.

More info to come soon.

Steven

Wednesday, June 05, 2002 at 12:36 PM (CDT)

Saturday, June 01, 2002 at 08:42 PM (CDT)

Hello all. Joshua’s stomach is finally starting to work properly. We are tremendously relieved. An end to this admission is in sight! Joshua’s feedings are increasing, and he’s pooping less frequently. He seems more comfortable as well. We’re keeping the goal of full-volume, ¾ strength feedings in a focus. Josh is getting there. Hopefully, Josh can be discharged on Wednesday or Thursday.

Dr. Katz, our favorite seersucker suit-wearing neurologist J, is treating Joshua’s high muscle tone with more Baclofen, which is helping a bit. A friend told me it could take a couple weeks until Josh builds up to a therapeutic level. We’re hoping it will happen quickly. Once Joshua can start to take his anticonvulsants again, his tone should be further reduced. During this time of severe spasticity, we are working to keep Josh’s hamstrings stretched. It is quite a challenge. I’m also trying to use the tone for standing. Josh is not very interested in standing, but he is doing it for a few minutes more every day. Once we get home, we can use his stander again to help keep him stretched. Standing is also a great way to stretch his hamstrings. Unfortunately, we do not have AFOs (ankle foot Orthotics), aka braces, that fit him, which would facilitate this process. We cannot even order new ones now because he’s too skinny and could cause himself nerve, tendon, or ligament damage with the amount of tone that he has. We are hoping that his tone will be controlled enough for him to be able to sit in a chair or stroller. Right now, he can barely be held on my lap without jumping off.

Anticonvulsants should be started early this week to prepare to get home. Further diagnostic assessments will be held off for a couple months until Joshua is fully healed from surgery and weighs more. We hope that Josh’s seizure-type episodes, which are getting more severe again, can be controlled enough for us to participate in some therapies. School is out of the question until September. At that point, Josh should have healed fully, have better spasticity control and be more stable, we hope, on medications. We will also determine, over the course of the summer, if we need to take Joshua to any other centers for epilepsy or movement disorders for further testing.

Josh’s weight is holding steady right now. He’s happy, alert, and playful. He’s also manipulative as heck. Josh is letting us know what he wants more and more. It is thrilling and exhausting all at once.

Steven and I can’t wait for us all to be home together. We have grandiose plans for sleeping late, napping, cooking, and snuggling together.

There are two families in the hospital right now, both preparing for surgery. Mary, 23 months, has tried almost all medications including the ketogenic diet. Evelyn, 18 months and from Detroit specifically for Dr. Fried, has many seizures and has been on most medications as well. Their mothers, Kathy and Jesse, are very strong women to whom we have been giving some support. Also, Stephanie, 19 years old, is preparing to come into the hospital for surgery soon. She and her family have managed some very difficult times. We pray for Mary, Evelyn, Stephanie and their families to have the fortitude to make it through this process to get the results that they are looking for. FYI Lydia Tripp, the baby from GA with intractable epilepsy, has arrived to Miami to try to gain some seizure control for her while giving her some quality of life. Lydia’s website can be reached through Mallory Moss’ website. Please keep all these families in your prayers as well.

The continued support for us as we plan to come home has been incredibly valuable to our sanity and to Josh’s well being. We look forward to writing updates from home. More to come in the next few days.

Erica

Thursday, May 30, 2002 at 11:28 PM (CDT)

Hey everyone. Joshua is healing well since surgery. His incision looks good, swelling is decreasing, and hair is growing quickly. Doctors are encouraged about Josh’s healing. The neurosurgeon is quite happy with Josh’s progress and plans to see him in a couple weeks to remove stitches from the four exit sites from the wires. The stitches from the main incision are dissolvable.

Josh’s stomach is still not working properly. He continues to “dump” lots. His poor tushie could light up the night sky. We used oxygen last night to help heal his tush and it worked. The GI folks are scratching their heads because his stomach is not healing as quickly as it should. We’ve changed to a different formula again. His poop is sent to the lab daily to check for problems, but results have been coming back negative. The goal to come home is full-volume feedings with at least ¾ concentration. He will likely come home on the TPN but at less than fifty percent nutrition. The goal is to have Josh off the TPN by the end of the month so that complications with his gall bladder and liver don’t crop up.

Josh also has very increased tone that is using up much of his caloric intake. It is exhausting and sometimes painful. His neck muscles are becoming over developed because of it. Josh has started taking a drug called Baclofen, which is a tone reducer. He is also still taking Zanaflex, which is also a tone reducer. The hopes are that his tone can be treated to allow for Josh to gain more weight and have more control over his movements. Josh has many involuntary movements like tongue thrusting, extremities jerking, very heightened startle responses to noises and touch, startle responses during sleep that wake him, and especially rigid muscles, tendons, and ligaments. He is stretched many times a day so that he maintains good range of motion and does not get contractures of his muscles. Treating Josh’s tone will allow the doctors to see what is underlying Josh’s many movements that are atypical.

Joshua is also having increased “seizure” type episodes. In combination with the spasticity, Josh looks like a mess. Without the anticonvulsants on board, Josh is especially alert, responsive, and playful. He’ll start back on some anticonvulsants once the GI issues are resolving. He needs to be protected from future seizures that could be dangerous to him. For now, we look to getting home before big decisions are made about seeking out other assessments for Josh to try to treat his episodes.

That’s the main stuff for now. Joshua is very loved and is very happy through all of this. We have no regrets over grid placement. Still, we want the best for Josh. Thanks everyone for your anniversary wishes, prayers for Joshua, and good wishes for us all. Please keep the prayers coming for us as we get more exhausted and excited about going home. More to come on Joshua’s updates.

Erica

Tuesday, May 28, 2002 at 08:01 PM (CDT)

Hi all thanks for being so patient waiting for the next update. We had a pretty mellow weekend with immediate family visiting. Joshua felt better being held upright during the weekend. He also enjoyed having his head free from wires.

On Sunday the goal was to manage his pain with morphine every 3 hours and Tylenol every 4. Between the meds and holding him upright his eyes did not swell shut and he was very happy. Joshua also is doing a lot of sleeping and is catching up from the surgery and grid placement. Also on Sunday Millie (nurse) came to watch Joshua in the PICU while we went out to celebrate our 6th wedding anniversary. Yes the second in a row in a hospital but at least we are together. Erica and I went out to brunch, talked, ate, drove around and discussed next steps with Josh. Meanwhile back at the hospital Joshua was pulling his schtick with Millie. Which means that he was acting cranky but really was fine, he just wanted his parents. When we returned he let out a big smile and stopped complaining.

Monday was another low-key day as we stopped giving Joshua morphine and just let Tylenol manage the pain. He slept a lot, but that is fine, we know his body is in recovery mode. We also met with several of the seizure docs to discuss next steps. They all have made one thing very clear, Joshua is a challenging child with no clear cut answers. They might be seizures or not. They could be coming from an area on the brain that is to small to detect or maybe this is a movement disorder. One thing we are sure we will go home on some neuro medications to keep Joshua stable. Joshua developed a small rash today that was probably caused by the Vancomicin but with some Benadryl on board this started to clear up.

Also on Monday we moved out of the PICU up to the regular pediatric floor on 3 Conklin. Joshua is in a private room (whew), room 3509. We will stay here while the gastro docs get his stomach working and get him back to regular feedings. Now that we have stopped the antibiotics this should be a little easier.

Today Erica met with the GI docs to put a plan in place. The goal is to start Joshua slowly on NeoKate and then get him back, hopefully, to Peptamen Jr. We also met with neuro docs and discussed some meds for Joshua to go on but those will not be started until the GI issues are straightened out.

Other than that we have more questions and few answers. The short term goal is to get Joshua as healthy as possible, get him home, back into some routing and then figure out where we will go from here in helping Joshua.

Thank you all for your thoughts and prayers.

One more thing…we met a family tonight from Detroit, seems that they read about Dr. Fried in the Detroit Free Press, where Mallory Moss’ story appeared. They are now here at HUMC with a 19 month old and hope that he can perform surgery they way he helped Mallory. Amazing how a story can help so many people.

Also please say a prayer for the Tripp family. You can find their link at the Moss family web site. They have a daughter Lydia who is also battling seizures and is right now being transferred by ambulance from Georgia to Miami. She went into status this weekend and they are having trouble managing her seizures too.

Steven

Saturday, May 25, 2002 at 03:13 PM (CDT)

Hello all. Today, we bring you news of Joshua resting comfortably with the help of some morphine in his newest digs in the PICU. He just had his dressing removed by the neurosurgeon and is being held by his Daddy. He feels better. He’s got a very interesting hairstyle; luckily it will grow in. Swelling is not too bad but may get worse in the next day or two.

Joshua had surgery yesterday to remove the grids and strips, and that’s it. We met with the Drs. Fried and Lancman early yesterday, prior to surgery, at which time we were very aware of what they were to tell us. There is no surgery they could recommend at this time. The team is not even convinced that Joshua does or does not have epilepsy because the data gathered does not indicate that the “episodes” are anything indicative of seizures. The EEG data findings showed nothing. Dr. Fried offered to resect part or all of Joshua’s left frontal lobe based on the facts of what Josh’s episodes look like to the naked eye, not to the objective data collected. We all agreed that resection based on very limited data is not in Josh’s best interest at this time. Once removed, the resected areas cannot be put back. There is no saying that Joshua can’t have this procedure down the road at some point, but right now is not the right time. The fact-finding mission of grid/strip placement is now completed.

So now what? A new chapter in the life of Joshua has opened. We hear everyone asking the same question just as we are. We plan to talk with Dr. Katz on Tuesday to map out a plan. It is universally agreed that Josh is experiencing something that is not great, but nobody is quite sure what it is. We’re not trying to guess what this could be, but we are scratching our heads just as everyone else. We don’t know what is to come or where it will be but we will keep on going. We do know that Joshua will be moved upstairs to general pediatrics to continue recovery but remain at the hospital until his GI system can handle feedings better. That will depend on his coming off antibiotics. He may come home with the PICC line as expected.

We are grieving the loss of hopes to have a life detached from the four walls of our home. We are grieving for Joshua in that experiencing these episodes are uncomfortable, and we could not help them end just yet. We continue to wish for Joshua to be able to go to school without having to be sedated to get there and back. And, we want for him to be able to play and do things the way he wants to. For now, we remind ourselves to take one day at a time as we always try to do. For now, we make our hopes more realistic ones of going home and recovering from surgery and seeing Dakota and his friends at music.

Thank you, thank you for all your prayers yesterday, today, and always. It means so much to us. We’ll update as things progress.

Erica

Friday, May 24, 2002 at 08:50 PM (CDT)

Just a quick update for tonight as exhaustion has crept in. Joshua had grid removal surgery today.

He DID NOT have any epilepsy surgery. Since the neuro docs could not find any seizure foci we determined that we should not remove any of Josh's brain tissue. So we (including the doctors) are not sure if Joshua's movements are even seizures.

Joshua is resting right now but will be in some pain again, morphine will help to ease the situation. His eyes will also swell shut again. We will be spending the next few days in the PICU and then moved upstairs for further recover.

As we put our plan in place for what is next with Joshua and what these movements/episodes are, we will let you know.

Thanks again to everyone for your words of encouragement and support.
Steven

Thursday, May 23, 2002 at 01:47 PM (CDT)

Hey all. Sorry no update yesterday. Too pooped and too late. Joshua’s seizures continue as before. The news from two epileptologists is that there is no news from a specific place in his brain at this point. This is not to say that there is not a seizure focus that is very small and very deep that is not perceptible. This is not the final word. The whole team will be reviewing all the information this afternoon, and we should hear the recommendations either later today or tomorrow morning. Joshua had mapping done yesterday afternoon and some more this morning. More may be done early this afternoon. FYI: Mapping is a process of actually mapping where specific motor function is occurring in Josh’s brain by reversing electric current through the electrodes on the grids. We are hoping that the doctors can gather some helpful information. If not, it’s not anything that can harmful to him. The doctors may also do some direct stimulation to the brain in the OR using, what Steven calls, jumper cables. So, we may not actually know what the final word is on surgery until the time that Josh is in the OR.

Our favorite seersucker-wearing neurologist, lol, Dr. Katz, assures us that he is not out of options if Joshua does not have an epilepsy surgery. Grid placement is not a last-ditch effort to help Joshua’s epilepsy. We shall see what the options are available for tomorrow’s surgery and for next week. We need to hear about what the ‘seizure boys’ will also recommend.

Patience is what we are looking for most right now. We have lots of questions that will be for Josh, but we really need to hold on to them until tomorrow. Nobody has any definitive answers. Still, Joshua is a most challenging patient to everyone.

More to come as we know it. Please, continue to pray for Joshua and for us. Erica

Tuesday, May 21, 2002 at 08:07 PM (CDT)

Hello everyone. The end of the grids is in sight. I say that with much relief. Joshua is ‘ticking,’ so to speak. We want Josh healthy above all else. I am having deeper conversations with Josh’s doctors. Pediatrics can’t wait for the grids to come out so that Josh can start to heal and not get a bad infection. Infectious diseases feel similarly. Neurology is concerned, baffled, and determined. My chat with an epileptologist elicited more information about what a couple members of the team are thinking and what they hope to gain from ‘mapping’, which will occur today or tomorrow. Fortunately, I continue to hear the doctors say that they are confident that what Joshua is experiencing are seizures. A treatment is definitely the goal. We do not expect to hear what is recommended until late Thursday; we do not want to push the doctors to tell us something until they have all of Joshua’s information gathered; we do not want to hear until they are sure of what they are telling us. We continue to stay very ‘present’ to avoid guessing and ‘what if’ing to the point of hurting our current emotional strength. We live hour-to-hour and that’s okay until Friday.

Today, Joshua was busy playing with his toys more. He took a very good nap in spite of lots of interruptions from nurses and doctors. He sat in his car seat for a little while until the PT visited for some stretching. Josh even did some standing and took a couple steps for me. Joshua’s dressing did not need changing today, but was reinforced in what has become the customary fashion of adding a diaper to the dressing. Joshua helped sing “Happy Birthday” to Daddy and has given lots of smiles and kisses.

Steven’s day was as good as it can be. His office even celebrated all the May birthdays today. We went out to dinner with his parents and mine to the Cheesecake Factory for a favorite meatloaf sandwich followed by...Cheesecake. Josh’s nurse from home, Teri, watched Josh at the hospital for the few hours that we were out. We’ll celebrate more once we are discharged from the hospital.

Good news. Josh’s school placement is very close to being final. We are thrilled that we do not have to worry about it at this point.

We take comfort every day in knowing that Joshua goes to sleep every night knowing that he is loved by many. Joshua’s smile continues to light up our world. Joshua continues to remind us that there is so much ahead for him. Joshua gives so much.

More to come.
Erica

Monday, May 20, 2002 at 08:10 PM (CDT)

Hi, thanks again for the support, daily prayers, messages, everything. Staying present, that’s our mantra and goal. We are really focusing on this right now. Joshua was in a good mood today. He read lots of books, saw his grandparents, even sat in his car seat for awhile. Still nothing showing on the EEG even though his seizures are visible to us.

Joshua had a special visitor today. Mary from across the hall, a 2 year old cutie, hooked up to an EEG wanted to come visit. So her Mom (Kathy) with EEG connections in tow brought her into our room to visit Joshua. She decided that it looked like fun to be held in Erica’s lap because that is where Joshua was. So Mary just climbed right up. So now Erica had Joshua and Mary in her lap. Needless to say it brought a smile to everyone and an adorable picture of the 2 kids and Erica.

We also met a family from down the hall, the Harris family. They are in the hospital to have a g-tube placed. Well as you all know I can talk anyone so we started talking. They have a 2.5 year old, Molly. Well we found at the she will be attending the same school as Joshua and will be in the same class. It is so nice to meet another family whose child will be joining ours at school in the fall.

Other than that..it was great to see Joshua smile and talk to everyone. I needed to see that. Tomorrow is my birthday and even though it will be a tough day, I know we have and are doing the right thing for our child.

That is all for now, thanks for your continued strength and helping us through this. We appreciate it.
Steven

Sunday, May 19, 2002 at 08:19 PM (CDT)

Hello all. I wish I could be writing that the sleep deprivation and time have done the trick to capture seizures on the EEG. Friday night’s sleep deprivation lasted until 1am with Steven and Pop-pop Paul. Joshua had some seizures but mainly cried a lot because he was so tired. Saturday, Josh slept late and needed lots of medical attention for his head dressing and his PICC line dressing among other things. Josh continues to soak through his dressings rather quickly necessitating daily dressing changes. Daily dressing changes are not ideal because he should not be exposed to the air/bacteria too much. The staff on the floor is now resorting to reinforcing his dressings with a newborn diaper. The diarrhea persists but has changed in color; we’re heading toward seeing every color of the rainbow come out of him. Today was a bit more low-key.

Seizures continue as they have been. They are not showing on the EEG. We are frustrated for sure. I am at a new place with the frustration, today. What ever will be will be. I cannot guess what will be for Friday or next week or anytime beyond that. I pray that even if the seizures do not show up, maybe it will indicate other useful information about treating Joshua. A doctor from the neuro practice was in today and planted the seed in our heads that this may not be seizures but possibly a brain-stem issue. He would not elaborate, and I think I appreciate his doing that. Our goal is to stay present – today, tomorrow, and this week only. It is an extraordinarily hard task. We will strive for it anyway.

Steven’s birthday is Tuesday. Another birthday spent in the hospital with Joshua. His only wish is to have his son safe, healthy, and home. We will work for the day to be as low key as possible. Our anniversary will be Sunday. Another anniversary spent in the hospital with Joshua. We plan to do lots of celebrating once we’re all home together.

Please continue your prayers and good thoughts for Joshua and for us during what seems to be a more trying time than could have ever been anticipated. Please work to stay ‘present’ with us. Nobody can guess what will be for Joshua, not even the doctors. We will make our way through this time hour-by-hour and day-by-day.
Erica

Friday, May 17, 2002 at 09:19 PM (CDT)

Hello all. Joshua’s day today was a bit better than yesterday. He was quite irritable this morning but perked up after cuddling with Mommy. He needed his dressing changed again today because it was soaked through and had been quite soggy all night. He continues to drain CSF (cerebral spinal fluid), which is very common for people with grids. The infectious diseases doctor, Dr. Slavin (aka Kevin), relayed that Joshua may experience discomfort/headaches as the CSF drains; this is a commonly reported phenomena that is reported by people who experience a loss of CSF due to lumbar puncture. We’re now keeping Tylenol on board, but also watching fevers. Joshua is at the upper ranges of normal temperature. Vitals are taken very frequently and throughout the night; in fact, the overnight nurses are leaving the blood pressure cuff on Josh while he sleeps. He is doing well on his new antibiotics, and the doctors hope that it will cover any infection issues that come up before grids are removed. So far, all tests are negative/in the normal range.

The doctors involved are very concerned about Joshua and are watching him very closely. The epileptologists are in daily at least once. The neurosurgeon, Dr. Fried, is by often. The intensivist was by again today to set eyes on Josh. Infectious diseases will be by daily and be monitoring all tests. The neurosurgery resident was by again asking lots of questions. The nurse practitioner from neurology/neurosurgery is responsible for most dressing changes to monitor Josh’s head. The neurologist is in daily for extended visits. The pediatrician is into the room daily. EEG techs continue to monitor Josh’s head along with the nurses. Residents are in very often throughout the day. All are very kind to Josh and us and are interested only in Josh’s best interests. Pastoral care, almost everyone involved with pastoral care, visits daily as well – a source of strength for the whole family.

Seizures continue to occur as before. Some have gained a smidge of strength. They continue to not show on Josh’s EEG. Hope is still there that they will show soon. Josh has been in his ‘car simulator’ again today a couple times to elicit seizures. He is definitely not interested in his stroller and screams to the point of retching. These seats are not yet eliciting the type of seizures that we really want. I can’t help but feel sure that if we were to take him for a ride in the stroller down the hallway Josh will seize big. Of course, if we were to take him in the car he will seize. The problem is that the only place for him to be monitored on the EEG is in the room. The cables connected to the wall are only long enough for the room itself. The ability to have Joshua pass stationary objects with different kinds of lighting, differing air temperatures and air flows, and sounds with the Doppler effects is something that would be valuable to monitoring but is simply not possible. The playroom has a hook up for regular EEG monitoring, not grid/EEG monitoring because it doesn’t have the capability to handle the many more channels of information necessary for this more intense monitoring. At times, it feels that banging our own heads against the wall might be more productive.

What keeps me going today is knowing that things could truly be worse. It’s hard to believe, but it’s true. I also am keeping in mind that this is time limited regardless of the outcome. He will not have grids forever. He will not become a Bar Mitzvah with grids. Flowers will not sprout out of his head. He will heal from the surgeries and feel better. The unknown is scary though. We don’t know what is to be in one week, let alone one month. For now, we must make the most of Josh’s time with grids to elicit as much useful information possible because we don’t know if he will be a candidate for surgery again.

I left the hospital where Steven was with Joshua and preparing for a night of sleep deprivation with help from Pop-pop Paul. Joshua was very tired and irritable when left to lie on his back in the crib. Let’s hope for the most information possible. Luckily, Grandma Vonnie, EEG tech, and Noelle, the nurse, were working and available to help Steven. I’ll arrive early tomorrow and relieve Steven. He’s a trooper. I could never do the overnight.

That’s it for now. We are doing the best we can for Josh and hoping for the best results possible. The support from everyone continues to nourish us as we work hard for Josh. Thank you. We’ll continue to keep web postings up to date. Erica

Thursday, May 16, 2002 at 09:07 PM (CDT)

Hello all. Things continue to move along, underneath a dark cloud that seems to be located in room 3501 of Hackensack University Medical Center. Seizures continue to be small and frequent and not showing up on the EEG. Today, we had planned to get Josh into his stroller to make him seize more. BUT, Joshua now has a fever. He also has two places on the back of his head where the skin is quite red and close to breaking down. He had a peripheral IV in his arm crap out in the middle of the night causing pain and swelling. Diarrhea continues and is now a new color. He spent lots of time sleeping this morning and was then examined by lots of doctors. Joshua also had his dressing changed again today because of excess drainage and shifting of the dressing.

All tests continue to be negative for infection in his head. Tests of the poop continue to be negative. Joshua’s antibiotics have been changed, his head boo-boos have been cultured, blood will be cultured, poop will be cultured again. The wound care specialist has recommended pressure relief for Josh’s head, so he now has a ‘boobie” for when he is laying on his back. (The ‘boobie’ is actually what looks like a silicon breast implant but is manufactured for infants who need pressure relief for their heads.) Unfortunately, Joshua had an allergic reaction to one of the antibiotics already and had about an hour crisis this evening. He was treated and is doing better already. Hopefully, we will find out some helpful results from tests tomorrow. Steven will also do another overnight of sleep deprivation with Joshua tomorrow to see if that might help elicit big seizures.

We are acutely aware of the risks of Josh getting sicker and needing grid removal prior to having adequate information for epilepsy surgery; we are sickened by it. We are also aware that Josh’s opportunities for another surgery are much more risky with all the complications that he is having during this one. We are feeling pressure to be sure that we can maximize Josh’s possibly very little time left with the grids.

Today, Joshua got a delivery from Project Linus in Georgia. We are not exactly positive how they found us, we are guessing with help from the Moss family. Project Linus is a national organization with local chapters all over the US that provides hand made blankets to children in hospitals. Joshua now has a great Mickey Mouse quilt. He definitely recognized who was on the blanket. We are very thankful for the kindness of strangers.

Jim, a chaplain at the hospital, was in today and sang some songs for Joshua. He was thrilled and sang along a bit. We can’t wait for him to be back.

That’s all for now. Must go to sleep. Thank you for all for your support and thoughtfulness for us. Please keep it coming as things continue to be so adventurous. Erica

Wednesday, May 15, 2002 at 08:11 PM (CDT)

Today was a meeting of the minds day. Erica and I decided it was time to get everyone on the same page so with the wonderful help of Stacey Bergman (social worker for the group) we had a meeting with Dr. Katz, Dr. Fried, and Dr. Lancman, as well as Stacey and Terry (Dr. Fried's nurse practioner).

The reason for the meeting was very simple we need to plan out what is going to happen because everything seemed very much up in the air.

Here is what came from the meeting. On Friday May 24th Joshua will have the grids removed and he might or might not have surgery, that is TBD. On May 23rd, Dr. Lancman will map Joshua's brain.

Our goals for the next 8 days are to try to get Joshua to seize so they show up on the monitors. We will try sleep deprevation this weekend as one tactic and are planning others.

Needless to say this was an emotional day. Due to some lack of communication at one point we thought they where going to map Joshua today. However mapping has several risks including going into status.

So we are happy to try to keep the grids in one week longer and then see if we can get any data.

We also learned today that even though for now the swelling on Josh's left side of his face is negative for infection...it could be an infection waiting to happen. Once we stop the antibiotics an infection could still happen.

So after all of this discovery and planning we are emotionall exhausted. Today took a lot out of both Erica and me and we pray to have the strength to get some answers, not hurt Joshua, and move forward.

Thanks to all of you who check the web site. We appreciate all your thoughts and prayers.

Steven

Tuesday, May 14, 2002 at 09:11 PM (CDT)

Hello all......Joshua had a very good night last night. He slept well and even napped a couple times today. Joshua's mood was pretty good most of the day until 4 or 5ish when he became more irritable. Joshua's PICC line is working out well. He's getting full nutrition now, and he's also getting a very little bit of pedialyte through his g-tube so that his gut does not atrophy. We're planning that Joshua will go home with the PICC line and continue to get TPN at home until he reaches a better weight and nutrition status.

Results from the lab tests on the fluid drained from Josh's head are all negative, at this point. It is assumed, for now, that there is no infection and is just CSF. They will likely not continue to drain that site because it will refill with CSF as soon as it is tapped.

Joshua continues to seize a lot. They are still not the strongest of seizures, but some of them hurt and make him scream. We still have not needed to use emergency meds for the current seizures. Joshua had more time in his car seat with the make-shift car simulator with help from Aunt Debbie, Uncle Peter, and his medium-sized cousin Simon. Today, he was rather relaxed in the seat and had very few very minor seizures. We are also allowing him to get a bit more annoyed at laying int he crib too long to elicit more strength in the seizures. As far as I know, the seizures continue to show up as slight changes on the EEG, not enough data for epilepsy surgery.

The grids, however, remain day-to-day. They will be removed immediately at any point if Joshua shows symptoms of infection or other problems. We will not be surprised if Joshua has surgery this week to remove the grids. Dr. Katz continues to remind us that he is mindful of Josh's overall health and will "do no harm" as much as he can control. In discussing the situation with Dr. Katz, we have learned that Joshua presents quite the phenomenon. None of the doctors in the practice have ever seen a child have grids placed, a very abnormal EEG, then have a normal EEG after getting a large dose of phenobarbitol to stop status epilepticus. NEVER. How does this happen? Joshua continues to baffle everyone. Hopefully we will have another phenobarbitol level drawn tomorrow to see if the med is completely out of his system - it has an incredibly long half-life and Josh's system is a bit out-of-whack to metablolize the med normally. Steven and I have also asked lots of questions about what more can be done to maximize our time with the grids to get the most beneficial information. Tomorrow, we will hopefully have some answers.

We are extraordinarily frustrated. So many unknown factors. Waiting. Waiting. Waiting. We are exhausted physically from staying at the hospital overnight and even more from the rigors of caring for Joshua during the days. We rarely turn the TV on let alone get time to eat sitting down. We are exhausted emotionally from the uncertainty of everything, from the hour-to-hour ups and downs, from longing for Joshua to just be ok.

The continued prayers and support from family, friends, hospital staff, stangers, anyone reading this website, etc. continues to nourish us every day. Thank you, thank you. Aunt Debbie, Uncle Peter, and Simon return to Tulsa tomorrow. Their visit has been so helpful for Joshua, us, and family and for that we are grateful. We already miss them.

More updates to come.......Erica

Monday, May 13, 2002 at 08:47 PM (CDT)

Hi all just a quick update. For those of you who we have not told Joshua is NOT having surgery on May 14th. They do not currently have enough data for surgery at this point but hopefully they will.

So what happened today. Joshua woke up in a foul mood and was very cranky. As his emotions go so do ours and we where extremely stressed waiting for the PICC line.

With Aunt Debbie watching the procedure with us in the PICU they where successful. The PICC line was placed in his left arm. Also, Dr. Fried removed some fluid from the swollen area by Josh's left ear. They are testing it today to see if it is infected. If it is we have to work with the Dr.'s to see what the next steps are, such as grid removal or waiting a little longer. Joshua remained a little less cranky this afternoon. He even smiled a little bit which made us smile too.

We are relieved that the PICC line was placed and this site will enable Joshua to get some much needed nutrition. Now we are hoping that the fluid buildup is not infected.

In terms of seizure activity the Dr.s are only seeing small buzz's of activity but nothing definitive yet. We are hoping that more data shows up soon.

That is it for now we appreciate everyone's good thoughts and words for us as well as Joshua for his birthday.

Sunday, May 12, 2002 at 08:35 PM (CDT)

Happy Mother's Day everyone. The good news is that Joshua had a nice birthday party with us, his grandparents, Aunt Debbie, and Uncle Jeffrey. It was an early brunch that was a very nice time. Joshua liked opening his cards and pouted when there were no more cards to open. It turned out to be a very special event because American Express was visiting the hospital yesterday with Blue from Blue's Clues and brought lots of gifts for Joshua. The room had been decorated on Friday with help from Aunt Debbie...lots of red streamers, signs (one from Ann, the childlife specialist on the floor) and a big 3 on the door. Lots of balloons and teddy bears were delivered from special friends. I can't believe that I have a 3 year old! The rest of Joshua's birthday was a bit more miserable with lots of crying, moaning, etc.

Well, the rest of the news is not so great. After 3 attempts at the PICC line on Friday, we've been waiting until tomorrow for another go at it. This time, the doctors may use radiology to assist in locating the vein. The PICC line is essential because Joshua needs supplemental nutrition desperately since he has not had a full day of nutrition since April 30, the antibiotics are harsh on is peripheral IVs and can cause them to crap-out faster, he needs a reliable IV site for emergency meds if he goes into status epilepticus again, he will be less able to handle possible infections and furhter surgery if he loses too much more weight, and we have to stop the diarrhea that has continued to also avoid potential contamination risk with his head. Lots of reasons. If the PICC line is not possible, then we have to consider a central line/Broviak (sp?) which will require surgical placement. He would probably keep that type of line through discharge to home to help get him fatter at home. TPN is very necessary right now for his nutritional needs.

Joshua's left temple has begun to swell again starting Saturday. It has also turned red and a bit blue. There is definitely fluid behind the swelling. It has caused us concern all weekend. Dr. Fried was in to see it this evening and reassured us that he will drain some of the fluid tomorrow to see if it is an infection or just a build up of CSF (cerebro-spinal fluid). If it is an infection, then it will need to located, possibly treated with different antibiotics, but also be considered to hasten the data collection.

Lots on tap for tomorrow.

On the seizure front.....Joshua is having lots and lots of seizures every day. They are still not his strongest of seizures but they are getting slightly stronger. The doctor who was in over the weekend reported slight changes on the EEG with some, not all, of the seizures. We still need them to be lots stronger for more accurate data collection. We will do more stroller and car seat stimulation in the coming days.

Steven and I did get a chance to feel a bit human. We went to a wedding last night for Josh's Aunt Wendy's sister, Rachel. It was nice to get dressed up (even though we did it in the hospital) and go to be with other adults. We had Joshua's nurse, Teri stay with him in the hospital for the evening until we returned. It was a delight to celebrate a mitzvah.

Wish us luck, pray for us, and think positive thoghts for us in preparation for what could be a difficult week. Let's hope it goes as smoothly as can be. We are prepared for most of the options anyway. Thanks for everyone's birthday wishes for Joshua and Mother's Day wishes for me. We all appreciate them. More to come......Erica

Friday, May 10, 2002 at 08:00 PM (CDT)

Sorry it has taken so long to update the site. This hospital stay is taking the most out of Erica and me, than any of our previous stays.

Joshua is pretty much his happy self again. We are seeing his typical seizures when he is laying down, in his car seat, being held, and in his stroller. We are pressing the button numerous times during the day to mark the seizures. Here is the frustrating part. The neurologists are seeing nothing. That’s right NOTHING! Even with the grids in EEG is showing up clean, same as the month of March! How’s that for frustrating.

Needless to say with no data, no surgery on May 14th. In fact no surgery until we have any data. So now our stay is undetermined while we wait and see if Joshua will seize. We thought that since the meds from when he was in status might be preventing the seizures from showing. Now with the meds out of his system we wait and see.

This is very frustrating for all parties involved especially Erica and me. We want Joshua to be as healthy as possible and did not want to put him through this whole process unless we could help him. I just hope that the grids will turn up something!!

Also the PICC line was not put in today because of problems getting a good spot on Joshua’s right arm so they put in an IV. They will try again on Sunday or Monday for another attempt at the line.

On a positive note Erica’s sister, Debbie, arrived yesterday and spent today with Erica at the hospital. Tomorrow Peter and Simon arrive. Simon will be an uplifting presence to all of us.

As for the weekend, tomorrow, May 11th we will celebrate Joshua’s 3rd birthday here in HUMC. We are having a small party in the room and it is already decorated. On Saturday night, Erica and I will go to a black tie wedding for a little break, while Terri (Josh’s nurse) stays with him in the hospital for a few hours. Sunday we will celebrate Mother’s day at HUMC too.

We wish all Mom’s out there happy Mother’s day. Enjoy your weekend and thanks for your continued support through this difficult process.

Thursday, May 09, 2002 at 10:01 AM (CDT)

Good morning. A bit of exhaustion prevented me from updating last night. So where are we? Joshua is doing ok.

Tuesday night he decided that sleep was not in the cards so he woke up at 11 PM and decided that it was playtime until about 4:30 AM. Slept for a little bit then was up again. Put this way he stayed awake until last night at 8:00 PM. This could be withdrawl from going into status on Monday.

The good thing is on Tuesday and Wednesday Joshua started to act like himself, smiling, talking, laughing, playing, singing, etc. What a relief. Needless to say though, after a sleepless night on Tues./Wed. I was a little tired.

The neuro docs came by yesterday morning and told us that the seizure activity we are so desperately looking for did not show on Monday or Tuesday. Even thought Joshua was in his chair and laying in his bed showing his typical seizure the monitors are picking up nothing. This could be caused by leftover Phenobarbital in his system from Monday and the drug should be out of his system on Thursday, so we are hoping to see something. Even the data collected last week is not showing up. We are trying to keep a positive attitude about this and having Joshua act more like himself the past few days is helping.

Yesterday was an exhausting day for Erica as Joshua was very needy. They re-wrapped his dressing, as well as, re-sealed some of the spots that are leaking. Drainage of the site happens, think of it like a wick on a candle. The biggest thing to be careful about is to make sure that the leads from Josh’s head are not pulling. Yesterday Erica was careful to not move him to much because they were being pulled. After the new bandage was placed it was easier to move him. They also put in a new IV as well. He did sleep through the night until Thursday morning and this helps

Last night we had many visitors as the VanHouten’s stopped by to visit. It was great to see Paula, Alex, and Rob. In fact it felt like last September when Alex went through the same procedure as Josh. Also, Grandma Marilyn Pop Bobby, Grandma Ellen and Pop-pop Paul came by and are glad to see Joshua smiling and talking to them. We are anxiously looking forward to our visit with Aunt Debbie, Uncle Peter, and Simon.

Today, they are putting in a Picc line into Joshua. This will eliminate the need to stick him for IV’s and will give us an opening for nutrition as well as meds in case of status, etc.

That is all for now, I am staying over tonight so Erica can get some sleep at home. Thanks again for all for your kind words, thoughts, and prayers.

Steven

Tuesday, May 07, 2002 at 08:38 PM (CDT)

Hello everyone......Today was a far cry from yesterday's harrowing day. It helps ease some of the exhaustion of yesterday, too. After all the drugs he was given yesterday, Joshua slept until 11am today. He was out-cold. He woke up in quite a puddle. The best part, aside from not being in status anymore, was that Joshua woke up smiling and talking!!! The whole family thought, in unison, "He's back." It seems that Joshua fought through yesterday's difficulties and has the energy to face the rest of this monitoring.

The doctors were all in today. No news except we'll be decreasing medications more today and hoping to get some more useful information than yesterday. Unfortunately, the data collected while in 'status epilepticus' is not useful because it is a result of the grids irritating his brain, not his usual seizure activity. The docs were all reassuring that they will continue to be very responsive as long as we act quickly if something seems amiss; just as quickly as we acted yesterday. The longer status continues, the more difficult it can be to stop.

With Joshua acting so well, I put Joshua in his chair/stroller for the first time in two and a half weeks. At first, he was simply content and I was dissappointed that maybe it wouldn't trigger a seizure as usual. But then, Joshua showed us that he's an equal opportunity seizer. He had a bunch of his typical seizures. I couldn't be happier. (Sounds sick. doesn't it?) After 20 minutes, I took him out of the chair. He had more seizures in my arms and in his crib. Lots of great data for the epileptologists to work with!! Joshua did not need Diastat, but he probably had more than 30 or 40 seizures from 2pm to 8pm. I can't wait to talk to the doctors tomorrow! I keep telling myself to have patience. In spite of all the seizures, Joshua was very happy and expressive. A relief for Grandma Marilyn, who was in the room yesterday during Josh's status....a relief for the whole family.

On other fronts, Joshua's head stopped the drainage over the past couple days. He'll probably have another bandage change tomorrow. Joshua has bilateral aspiration pnuemonia. It's not surprising to us, but it means another antibiotic. The antibiotics to prevent infection and to treat the pneumonia can be harsh on Joshua's veins, so we must be quite vigilant in watching his IV site. Joshua will likely get a more permanent/reliable line for intravenous treatment tomorrow which will also allow for supplemented nutrition. Joshua is not up to full feeds and will not likely get to full feeds because he has horrible diarrhea from all the antibiotics.

We are getting ready for Joshua's birthday on Saturday. We are preparing him to hear the birthday song and hope to have a quiet celebration in the hospital with Joshua's grandparents. Aunt Debbie will also be around at the end of the week with Uncle Peter and Big Cousin Simon joining over the weekend. They plan to stay through the surgery. We are greatful for their support.

The support we have received from emails, snail mail, phone messages and calls, visits, web posts and hits to this site astound us. We thank you all. Please continue to pray for Joshua and for us. Joshua went to bed knowing that he is greatly loved......Erica

Monday, May 06, 2002 at 07:57 PM (CDT)

Today was a long day. Joshua slept pretty well last night. In the middle of the night we had to change his IV site. Other than that he was fine. His left eye started to swell shut again.

In the morning he woke up and was in an ok mood however, his head was hanging to the left. He let out a little scream and then seemed to be going ok. I left for work and the called to check in with Erica. It seemed that Joshua's scream became more intense and he bacame crankier as the morning went on. So after debating what to do it was decided maybe he was in pain from the grid placement and to give him some morphine. The neuro docs came by this morning and said the are getting good data and we hope to see more.

Then the afternoon came. Joshua's screaming became stronger. He also started to twitch and everytime Erica tried to move his head to the right he would scream. So around 3 pm Erica called the nurse in and Joshua started to twitch more violently. Erica told the nurse to go get some help.

Everyone came running, neuro docs, residents, nurses, etc. Joshua was in status. What that means is uncontrolled seizures that if left unchecked could be life threatening. This went on for 45 minutes, while in status Joshua recieved 2 diastats (valium) and 140mg of phenobarbital. The combo eventually stopped that acitivty but he had already seized so with the drugs on board and the seizure he fell asleep.

Needless to say Erica was very scared, and so was I. The status is related to the grid placement and was caused by them so the data we collected from being in status does not help Joshua. This is one of the risks associated with this. Anyway emotionally this through for a loop.

Tonight we had a private duty nurse watching Joshua while he slept so Erica and I went out to dinner. Something simple and it gave us a chance to decompress from her harrowing day.

When I saw Josh this afternoon he was sleeping and when I left at 8 PM he was still sleeping. With the drugs on board he should sleep through the night.

We are hoping for a better day tomorrow and one not so scary. We thank you all for your thoughts, prayers, and wishes.

Steven

Sunday, May 05, 2002 at 08:41 PM (CDT)

Hey all......I just got home. Today was a much better day!! Joshua had a rough night getting comfortable. Finally, he fell asleep soundly at 3am and slept until 6am. He woke up with both eyes open and lots to say...very loudly. His spasticity has returned in earnest – another normal sign. Josh had markedly decreased pain. He did have more drainage today and needed a dressing change early in the day and some more packing of the dressing late in the day. We’re told this is normal; however, daily dressing changes are not advised due to increased risk of infection. The antibiotics he is receiving every four hours is also tough for Joshua’s system to handle...diarrhea, and lots of it.

Joshua has not yet had a typical seizure that we have been seeing up to this point as he starts returning to normal. The neurologist/epileptologist was in today and told us that some of the events that we have been recording up to this point are showing from a specific area of Josh’s brain. We can’t be more excited to hear that a focus is possibly being located. We’ll know more tomorrow when we talk to more of the team. This news helps make this sometimes torturesome procedure completely worthwhile.

Visits today from Rabbi Dan and Elana Cohen, Pop Bobby and Grandma Marilyn, and Pop-pop Paul. Lots of calls from Aunts, Uncles, and friends.

Love, laughter, hope, and Joshua get us all through this hour-by-hour. Support from everyone reading this is invaluable. Prayers and good wishes are essential. Thank you...........Erica

Saturday, May 04, 2002 at 08:37 PM (CDT)

Friday night into Saturday wea long. Joshua slept for most of the night on me. This meant that I was sitting upright in a chair most of the night watching TV. Also, Joshua's right eye swelled up tight so he could not see out of either eye. I cannot imagine what he must have been feeling. Scared is one of many thoughts that comes to mind.

We spent most of the day holding Joshua and he was comforted knowing that Erica and I held him tight. Later in the day they changed Joshua's dressing and said everything looked fine, we just have to be careful how we pick him up from the crib.

Also later in the day Joshua's left eye started to decrease in swelling. So as the day wore on he could open his eye a little bit to see us. He is slowly starting to act a little more like himself but is still uncomfortable. We had to give him a dose of morphine to help manage the pain this afternoon.

The Dr.'s came in and said that they are starting to see generalized seizure on the EEG. We are stopping the Neurotin today to see what effect that has and see if we can get Joshua to have some seizures that are focal in nature.

Also Grandma Ellen, Pop-pop Paul, and Uncle Jeffrey visited today.

All in all, another tiring and exhausting day. I hope that Joshua sleeps through the night so Erica can sleep.

Thanks again to everyone we know and don't know for your prayers, messages and support.

Steven

Friday, May 03, 2002 at 09:00 PM (CDT)

Hey everyone...After a difficult night of retching, suctioning, and some crying and a morning of pain and crying, Joshua finally got a very good amount of healing sleep this morning. His last dose of morphine was about 9:30am, and pain is now being managed on Tylenol. Joshua's face has continued to swell as expected. Although we really expected the swelling, expecting it and seeing it are two very different things. His left eye is still swollen shut, but Josh can still see us from the slit that is his right eye. He looks completely different. We moved him around a bit more this afternoon and held him. Changing positions is uncomfortable for a few minutes, but he settles eventually. It seemed that he was more comfortable/reassured being held. Lots more of that to come. He's also off the oxygen as of this afternoon.

Although Joshua has not had any of his typical seizures yet, the doctors are using every bit of the data they are collecting to see where his baseline/inter-ictal brain activity is. Anticonvulsants may be decreased in the next few days as Joshua feels better to elicit some strong seizure activity. Dr. Fried is steadfast in Joshua's date for the next surgery being May 14. He does not want to put Joshua in any more risk than he needs to be, so he will be pushing the epileptologists along to decrease medications or do any testing necessary. Dr. Fried let us know today that Joshua probably is not experiencing too much pain at this point. Rather he may have discomfort from some extra pressure in his head. He feels that Joshua is doing exactly what he should be doing at this point. It is expected that Joshua will probably not get any relief from swelling until Sunday or Monday. We look forward to those days.

We are all quite exhausted physically and emotionally at this point. When I finally sat down at the end of the day yesterday, I realized that I had eaten three meals while standing and hadn't sat for more than a half hour at a time. My ankles were a bit swollen and my feet were aching. Our energy will return as Joshua gets some spunk back and starts smiling and talking to us again. We know it's coming. For now, everyone's support bolsters us in ways that can't even be imagined...it keeps us going. Joshua will continue to keep us going as well. He went to bed tonight before I left the hospital knowing that he is tremendously loved. More to come tomorrow........Erica

Thursday, May 02, 2002 at 08:54 PM (CDT)

We have moved. Joshua is now upstairs in the EMU room 3501. He is stable though a bit uncomfortable.

Last night they did head x-rays, changed his bandages, took blood twice, and did a head CAT scan. All-in-all, Joshua was cranky and did not like to be bothered. He was very sensitive to noises. Neither one of us got much sleep Wednesday night.

Erica spent the day with him on Thursday and he was a bit more responsive. The left side of his face started to swell too. This is a side effect from surgery and we expected it. By the time they moved him upstairs the his left eye was swollen shut.

After moving him upstairs they connected Joshua to the monitors. All told 128 monitors are watching his brain activity.

They are keeping Joshua on morphine and tylenol for pain every 3-4 hours. Right now that will at least enable him to sleep and keep him as comfortable as possible. Hopefully, in a few days the pain will subside. He is definitely aware of what is going on around him and spend about 2 hours this afternoon checking things out.

I have learned a new level of emotional pain that I hope very few have learn. Combine that with exhaustion from lack of sleep and I am amazed at how tired we are but we will make it. Our goal to get Joshua seizure control is strong and we all will keep fighting for him.

The outpouring of love, support, and prayers is helping us and we really appreciate it. Thanks again and we will update tomorrow.

Wednesday, May 01, 2002 at 08:31 PM (CDT)

I just walked into the house, completely exhausted. The day started early for everyone. By 5am all of us were awake, either at the hospital or at home. Joshua had many visitors today from Dr. Fried, his nurse practitioner, social worker, Dr. Katz, anaesthesiology, hospital PT, pediatrician, family, and some friends. It helped with the waiting.

Joshua was finally taken to surgery just before 3pm (I think) and he was wheeled to the OR with smiles, laughter, and songs. I walked Josh into the OR and stayed with him until he fell asleep. Steven's chest pains started as he kissed Joshua goodbye outside the OR. (The chest pains have gone away since then.) We all waited in the surgical waiting area. Waiting was tough. Steven walked outside, around the hospital twice and I walked around it once.

After only 2 hours, Dr. Fried came out to talk to me saying that all went exceptionally well. Joshua has 100 grids placed in every possible area on his left hemisphere and about 20 strips on his right hemisphere. He'll then be connected to the computer for monitoring tomorrow morning. Next surgery is still planned for May 14.

When I left the hospital, Joshua was in the PICU and was responsive to us. He was actually pouting at us when we said things that he did not like. He is quite sleepy and will continue to be while he has morphine and after the trauma of neurosurgery. All four grandparents were with us for support and all agree that he looks better than expected after the surgery. We're all numb.

Josh will remain in the PICU at least one day and then be transferred back upstairs to the epilepsy monitoring unit (EMU) on the general pediatrics floor. Tomorrow will likely be a rough day, so I'm home to rest up for it while Joshua sleeps through the night with the morphine.

We finish the day with relief knowing that Joshua did well in surgery. We look to tomorrow with continued anxiety that he should be pain-free and that the necessary data is easily collected. Please, let this be the most difficult part of being parents. Joshua continues to carry us through this with his spunk. As usual, he goes to sleep knowing that he is greatly loved. This is all Steven and I can ask for everyday. We'll update more tomorrow. Please, continue to think of Joshua........Erica

Wednesday, May 01, 2002 at 11:30 AM (CDT)

Hey all....We're waiting...Surgery was rescheduled from 7:30am to 12:30pm to 2pm. So.....we wait. Joshua has had no food since 2am so he's got no energy. We're doing lots of cuddling and singing familiar songs. He likes this a lot. We expect to go to the OR in less than an hour. We'll update as we know more. FYI...Joshua should be int he PICU for at least 24 hours after surgery and will have morphine for pain. They'll be sure to keep him comfortable.

Keep praying and thinking about Joshua. Your support is tremedously helpful.....Erica

Tuesday, April 30, 2002 at 09:24 PM (CDT)

Joshua is settled in his room. Only 10-15 seizures on the car ride to the hospital. Not bad :-). We spent the afternoon hanging out with grandparents and nurses from the floor.

Tonight they drew blood, took a chest x-ray, etc., all prep for the grid and strip placement on Wednesday at 7:30 AM. We will update the site as soon as possible with the news from this 1st step of neurosurgery. After the surgery Joshua will be in the PICU for 24-48 hours and then will be moved to a regular room.

Thanks again to everyone for your thoughts and prayers we really appreciate it.

Love, Erica and Steven

Monday, April 29, 2002 at 08:30 AM (CDT)

Good morning!

We tried to have a mellow weekend and for the most part succeeded. The biggest challeng was Friday morning. I (Steve) went to the emergency room with chest pains. It was nothing but anxiety, however, can you blame us? We are facing one of the biggest challenges with Joshua. Needless to say I scared the (beep) out of Erica, as well as our families but we are all ok now.

We have received calls from the Moss family and the Van Houten's wishing us well and offering anything they can provide. Jeff Moss even offered to come up to NJ if we wanted him to. :-)

So right now the goal is to smile laugh and enjoy our time with Joshua at home. Tomorrow afternoon we will go to the hospital with the grid and strip placement scheduled for Wednesday morning at 7:30 AM.

Thanks to everyone for your support and prayers, we really appreciate it.

Steven

Tuesday, April 23, 2002 at 09:07 PM (CDT)

Joshua had a follow-up appointment with Dr. Katz yesterday, Monday. It was one of the worst seizure days he’s had aside from last May when he was in status. I took him to the doctor with the help of my mother as chauffeur. Joshua probably had forty seizures on the way to the doctors’ office. I wound up taking him of the car seat part way there (a definite no-no in our world). Joshua had pooped big, loose and everywhere. He was screaming in pain. He was sweating and in full extension/completely rigid. We got into the office while carrying him as he’s screaming. After learning of the half hour wait, Joshua started retching mid-scream which served to curtail our wait time. We went into the first available exam room, the retching stopped, and Diastat was given to stop the seizures from continuing and to stop the screaming. By this point, mom and I were trembling as Joshua was trying to catch his breath.

Dr. Fried, the neurosurgeon, walked in during this. He was very concerned as were the rest of the doctors and staff in the office. The result. Joshua would either be admitted then and there or go home and come back next week for surgery. We have chosen the latter.

Joshua has been scheduled for admission to Hackensack University Medical Center on Tuesday, April 30. Surgery for craniotomy and grid/strip placement will be Wednesday, May 1. Subsequent surgery for epilepsy treatment is tentatively scheduled for Tuesday, May 14.

Joshua did finally calm down. BUT…as soon as we put him back into the car seat, he began seizing again in earnest. Joshua got another Diastat on the way home. All tolled, Joshua had close to 70 seizures yesterday. What a day.

Today was a better day, thankfully.

Steven and I are nervous, but very excited that Joshua’s misery may be ending soon. Joshua continues to live every day knowing that he is loved very much. We are working hard to give lots of extra hugs and kisses. Spoiling him is not out of the question. Please, continue your prayers and good thoughts for Joshua………..Erica

Friday, April 19, 2002 at 04:04 PM (CDT)

Hey all….sorry for the delayed update. Now that we are all officially homebound, life is quiet. Joshua loves the extra attention that he is getting from everyone as we try to prevent seizures. He has caught up on some sleep. Seizures are generally below ten each day; some days are less than five. I took him to the neuro office on Monday with Grandma Marilyn and he had over 30 seizures and needed a Diastat while in the car. We’re definitely keeping him quiet otherwise. Our visit to the doctor was to follow up on weight gain and current drugs and seizures. We also visited with Dr. Fried to discuss the specifics of the next round of monitoring. It will be quite invasive requiring surgery to place the monitors. I signed consent for the procedure, and we are waiting for a date for this all to start. The goal is also to have Joshua about 25 pounds. The weight gain is like watching grass grow…..maybe slower.

Thoughts on signing consent for surgery: This was probably the hardest signature I have ever made. Yes, that was me saying, ”Please, cut my child’s head open to try to save his life from seizures.” Steven and I are both in a numbed state. We are scared and excited all at once. The excitement is because we have seen the success from surgery (see Mallory and Jenna’s websites to their successes). If it could even be possible, we are trying to make every day more extraordinary than the last with love, hugs, kisses, and every way possible to spoil Joshua. Please, do the same if you would like. Joshua won’t mind a bit.

In the midst of all of this, school continues to be a big issue. We continue to work with the school district to get the best out-of-district placement for Josh. They do not want Joshua in their in-district programs. They are in agreement that Joshua needs a one-to-one nurse with him because he is medically complicated. The school that we have found is also able to address his educational issues while managing the medical issues because they have a class specifically for medically complicated kids like Josh. It’s a good start for him. We’ll have to meet with the school district in the next couple of weeks to write his IEP, Individualized Education Plan.

Work is busy for Steven. Home is cleaner and neater, especially when we have nurses. Let’s all stay healthy now. Calls and visits are welcome. Please be healthy if you visit and call first.

We’ll update surgery dates as they become known to us……….Erica

Thursday, April 11, 2002 at 08:05 PM (CDT)

Today was the day to meet with Dr. Katz and find out what's next. Going into the meeting, we actually thought we would be having Joshua admitted in the next week or two for invasive monitoring. Well....not quite.

As it turns out, Joshua still needs a bit more meat on him before he's a safe enough surgery risk. So, we will work more closely with the GI folks to get Josh fat. Further, we need to control the seizures as much as we can to prevent illness or hospitalization before surgery. This means that we are adding more drugs to the anti-convulsant mix. We'll also have to limit Joshua's activity to the point of cancelling any unnecessary out-of-the-house activity. We'll cancel MEDEK, Hippotherapy, and music therapy because the car rides induce too many seizures. We'll avoid the stroller and high chair when necessary as well. Yes....this will be very difficult for us. But, on the other side of the coin, it will allow Joshua to gain some weight and avoid illness. We hope that Joshua will be scheduled for admission and surgical implanting of the grids and/or strips by the first week of May.

Life during the next few weeks will be quiet. We'll let you all know how Joshua is doing as time goes on.

On a very positive note, Joshua visited a school yesterday with both of us. The school is in Fair Lawn and can accomodate medically fragile children. It was a great visit. Joshua smiled a lot and said hello to some people he met along the way. Steven agrees with me that this school is a very good setting for Joshua. The principal let us know that they could indeed accomodate him; and, shortly after arriving home, she let me know that they will be able to accept him anytime he's ready to go to school as there is an opening now. We'll just need to complete our work with the school district to work out the details and get agreement with the child study team.

FYI Jenna Fernandez is going home to Georgia tomorrow! She is doing quite well in spite of a few bad nights or days here and there. I saw her and her family today at the doctor's office as they were leaving. Jenna was much more animated with much more head control. They are all excited to go home. We wish them well on their trip home and during the recovery process. Jenna's sister, Rachel, gave me a BIG hug before leaving that was priceless.

FYI An update to Mallory Moss' story was printed in the Macon Tribune last week. It was touching. Mallory seems to be doing so well seizure free. We wish them all well. The link to the story is: http://www.macon.com/mld/macon/search_results.htm
Be sure to search under Moss.

That's all for now. Thanks for everyone's love, prayers, and support.....Erica

Sunday, April 07, 2002 at 07:38 PM (CDT)

Hey all......We are definitely still basking in the luxury of being home, especially since the stomach virus has officially left the house. Joshua had a tough time kicking it, though. We had to take him to the ER this week due to some bleeding from his stomach secondary to the bug. It's just a little irritation that we are treating. However, it hasn't been good for the weight gain endeavors. We are still committed to getting him fatter.

Seizures have gotten worse. He's had his medication doubled. Joshua has 30 to 40 seizures on bad days; generally, those that we take him out in the car are considered bad. The seizures are starting to get longer in duration and faster in quantity. For instance, we took Josh to synagogue on Saturday morning for a one hour service for special needs kids and their families. In an hour and a half, Joshua had over 20 seizures. Not good. It required diastat for sure and then an hour nap. Even though he has been making developmental strides, we know that we can't live confined to our home.

The next meeting with the doctors is on Thursday (rescheduled from last Thursday)at which time we will find out the team recommedations of what, when, where, and how invasive monitoring will happen for Joshua. We are eager to find out what they have to say.

Joshua has been a great kid. He is a bit clinging since the virus, but he is very talkative and happy otherwise. Crankiness happens in spurts and is often associated with a bad cluster of seizures or intense spasticity. Joshua is especially enjoying standing in his new stander. Today, he stood for a couple hours without complaint or seizures. Amazing. He has also been doing well with therapies. Dakota was happy to see Joshua back to hippotherapy. Joshua was even happier to be back.

FYI Jenna Fernandez is doing quite well. They have a long road of rehabilitation ahead of them, but she is already making increadible improvements since surgery. They plan to return to Gorgia this week.

More to come as we learn more. Keep the prayers and support coming; it is valuable to us in immeasurable ways........Erica and Steven

Tuesday, April 02, 2002 at 03:43 PM (CST)

So we are enjoying being home. After I got over being sick the next in line where Joshua and Erica.

Joshua spent the weekend dealing with a yucky tummy though he was in good spirits. We had to put him on pedialyte for a few days but are now working our way back to full strength formula.

Then yesterday Erica threw her back out and caught the stomach bug. After a day of torture today she awoke and felt better. Better enough to take Josh to Hippotherapy, which he loved, of course.

Anyway that is all for now, we are very excited to be home and are trying to get into some sense of normalcy. We are meeting with the Dr.s on Thursday to discuss next steps. Joshua is in good spirits and is enjoying being home very much.

Thanks again to everyone for your thoughts.

Thursday, March 28, 2002 at 09:17 PM (CST)

Hey all…..We are home together as a family. What a glorious day. We made it home yesterday afternoon at about 3pm. We squeezed in a bath for Joshua (and he really needed it) and a shower for me and made it to seder with the family. We all slept in our own beds and slept well. Joshua has been ecstatic about being home since we arrived yesterday. Actually, he won’t shut up. He is especially smiley and giggly. He’s even giddy. We are soooo thankful for his good mood.

We have left the ‘Hotel Hackensack’ at this point because his EEG, as the doctors say, is unremarkable. Two weeks off meds and sleep deprivation and torture of just being at the hospital and nothing showed on the EEG. Joshua was discharged having 20 to 30 seizures daily, not needing Diastat, and on a low dose of one anticonvulsant. Good news, he's gained a pound on the new formula. Fat is coming for this kid.

This week was probably one of the most grueling we’ve had to this point in our ‘Hotel’ adventures. Monday we discussed going home and when to come back for appointments and/or invasive monitoring. Big decisions had to be made of when to plan to give up the video/EEG monitoring acknowledging that it is not likely to change even with another week and getting comfortable (is this the right word?) with the decision to do invasive monitoring. The doctors wish to pursue invasive monitoring in spite of not having EEG data because Joshua’s seizures are clinically focal in nature. The plan now is a short vacation at home, about 2 weeks, during which time we will meet with the team to discuss their recommendations and schedule re-admission.

FYI….Invasive monitoring involves neuro-surgery to implant grids, strips, and/or peg electrodes on the surface of Joshua’s brain.

Monday night, Steven and I had a date! We went with the other four Gendels to see Robin Williams. It was a nice break. Richard, the nurse who went with us to Florida, babysat for Joshua, with at little help from Pop Bobby. We couldn’t be more grateful. It was healthy laughter and good to be out together. Steven then went home and got hit with a brutal stomach virus. He was out of commission for Tuesday and some of Wednesday. Even tonight, he’s still moaning on the couch. This bug is bad. Joshua and I are staying away.

Update on Jenna: Jenna Fernandez had a corpus callusotomy (severing of the hemispheres) on Tuesday and was doing well in PICU when we left yesterday.

Happy Passover and Happy Easter. Thanks for all the prayers and good thoughts. We still need them so keep ‘em coming………Erica

Tuesday, March 26, 2002 at 04:51 PM (CST)

A quick update. Joshua is coming home either late today or tomorrow. That is the good news! We will have to go back in though later next week. More details to follow.

Saturday, March 23, 2002 at 07:52 PM (CST)

Hi, it is Steven.

So after a sleep deprived Thursday night what happened? Nothing much. We kept Joshua up as late as possible to try to induce seizures that would be strong enough to show on the monitors. Josh managed to stay up until 3 am before sleep gave in. The amazing thing was how awake he was! He even sat in his chair for 3.5 hours without complaining. On Friday we where both tired and tried to catch up on some sleep.

So even with keeping Josh up all night, stimulating him more, etc., his seizures are still not showing up on the EEG. It is frustrating for us because we are coming soon to decision time and are not sure what to do. Needless to say Joshua is a tough case and the docs are somewhat amazed at how his seizures have not shown up in 3 weeks off meds.

Anyway Erica is home for some much needed rest and will sleep in tomorrow. On Monday we are taking a break and Richard will watch Josh in the hosptial while we go see Robin Williams.

We hope everyone is doing well, thanks for all the prayers and thoughts and we will update again soon.

Thursday, March 21, 2002 at 07:44 PM (CST)

Hey everyone........Sorry we missed the update yesterday. Exhaustion is definitely a factor.

Seizures continue to increase each day with today over 30 or 40. They are also getting stronger each day. Yet, the seizures continue to elude the epileptologists as they miss the EEG. His EEG continues to look like that of a typical child. This means that Josh’s seizures come from place deep in his brain. We hope each day for the doctors to come in and say that it is, at least, starting to show some change.

I did ask whether information from the EEG in June, the last time seizures showed on the EEG, is at all helpful in this data collection. Unfortunately, it is not enough and things may have changed since then necessitating new data.

As we consider this phase of pre-surgical evaluation, we need to try to keep in mind that the plan has been and continues to be 2 weeks off medications for the best evaluation. We are now at day 10 off meds completely. If seizure activity begins to show on the EEG, the evaluation process can be lengthened. However, the plan at this point is to talk early next week regardless of the EEG and make a plan for the next steps. The epileptologists continue to be hopeful that the EEG will change before this is all said and done. We must also have that hope…we wouldn’t continue to put Joshua through this if we didn’t. Joshua is a difficult patient, and everyone is aware of it.

In our efforts to elicit stronger seizures, we are stimulating Joshua by doing as much with him as he will let us. Tonight, Steven is with Joshua and will attempt to keep him awake all night with the hope that sleep deprivation will do the trick. (We remember Alex VanHouten’s many nights of sleep deprivation....and no seizures.) Pop Bobby will help for this evening and Pop-pop Paul will be arriving early am tomorrow to help out in keeping everyone awake and happy.

Joshua’s GI issues seem to be resolving with the addition of another medication for gastric emptying. He is handling the feeds with minimal retching and residuals. His tone is another issue. Joshua is so spastic that he can’t even sit still for a few minutes. He must be using all the new calories that his is getting just to keep up with his involuntary muscle movements. He is the same weight as last week: 22lbs. 11ozs. The spasticity is so severe that holding him is often a challenge. The high tone must also be exhausting for Josh.

Joshua’s mood is still pretty good. It was especially good for a day off the electrodes. He was very very happy to be disconnected from the headgear. When he is connected.....he is attached to me and anyone else who will hold him. Exhausting, but understandable for a toddler.

We are exhausted but grateful for all the help we’ve gotten. We can’t continue to do this without our families and the support and prayers of all of you. Please continue your good thoughts and prayers for Joshua and for us......Erica

Thursday, March 21, 2002 at 07:42 PM (CST)

Hey everyone......Sorry we missed the update yesterday. Exhaustion is definitely a factor.

Seizures continue to increase each day with today over 30 or 40. They are also getting stronger each day. Yet, the seizures continue to elude the epileptologists as they miss the EEG. His EEG continues to look like that of a typical child. This means that Josh’s seizures come from place deep in his brain. We hope each day for the doctors to come in and say that it is, at least, starting to show some change.

I did ask whether information from the EEG in June, the last time seizures showed on the EEG, is at all helpful in this data collection. Unfortunately, it is not enough and things may have changed since then necessitating new data.

As we consider this phase of pre-surgical evaluation, we need to try to keep in mind that the plan has been and continues to be 2 weeks off medications for the best evaluation. We are now at day 10 off meds completely. If seizure activity begins to show on the EEG, the evaluation process can be lengthened. However, the plan at this point is to talk early next week regardless of the EEG and make a plan for the next steps. The epileptologists continue to be hopeful that the EEG will change before this is all said and done. We must also have that hope…we wouldn’t continue to put Joshua through this if we didn’t. Joshua is a difficult patient, and everyone is aware of it.

In our efforts to elicit stronger seizures, we are stimulating Joshua by doing as much with him as he will let us. Tonight, Steven is with Joshua and will attempt to keep him awake all night with the hope that sleep deprivation will do the trick. (We remember Alex VanHouten’s many nights of sleep deprivation....and no seizures.) Pop Bobby will help for this evening and Pop-pop Paul will be arriving early am tomorrow to help out in keeping everyone awake and happy.

Joshua’s GI issues seem to be resolving with the addition of another medication for gastric emptying. He is handling the feeds with minimal retching and residuals. His tone is another issue. Joshua is so spastic that he can’t even sit still for a few minutes. He must be using all the new calories that his is getting just to keep up with his involuntary muscle movements. He is the same weight as last week: 22lbs. 11ozs. The spasticity is so severe that holding him is often a challenge. The high tone must also be exhausting for Josh.

Joshua’s mood is still pretty good. It was especially good for a day off the electrodes. He was very very happy to be disconnected from the headgear. When he is connected.....he is attached to me and anyone else who will hold him. Exhausting, but understandable for a toddler.

We are exhausted but grateful for all the help we’ve gotten. We can’t continue to do this without our families and the support and prayers of all of you. Please continue your good thoughts and prayers for Joshua and for us......Erica

Tuesday, March 19, 2002 at 08:26 PM (CST)

Hi all. I am typing this in the room while Josh sleeps next to me. So far still no seizures showing up on the EEG even though Joshua is having them by his outward actions.

We are in pretty good spirits while we try to manage this crazy time. We are going to try to keep Josh awake Thursday night for the whole night to see if lack of sleep will stimulate seizures that show up on the EEG. We are also trying to do more to stimulate Joshua by having him sit in his chair, walk, sit, do Medek, etc.

We are hoping that the seizures show up soon. Today Joshua had a visit from Grandma Marilyn, Pop Bobby, Aunt Jean and Pop pop Paul. He was also very talkative today. They removed his EEG leads to give his scalp a break and will reconnect him tomorrow. The reconnecting process is long and Joshua is very unhappy and voices his displeasure throughout the process.

That is it for now. We will update you as things change.

Monday, March 18, 2002 at 02:06 PM (CST)

We've MOVED ROOMS. We are now in Room 3502.

Still waiting for seizure to show up. We are trying not to get frustrated during this process but it is challenging. Right now Josh is having his 15-20 a day but they are not showing up on the EEG. We are waiting it out. We might try to keep Josh up all night (a tactic to induce seizure activity) but we are debating next steps.

We are recovering from sleep depravation. Joshua decided on Friday night and Saturday night that sleep was not a good thing. In fact he ended up Saturady night waking up every 15-30 minutes. Needless to say Erica (who stayed that night) was very tired. SO last night I sent her home early. Last night Joshua selpt well, and did not wake up at all until 7:30.

Our next challenge now revolves around retching. We are trying to find the right balance when feeding him. Sunday at 3 AM he retched 6 ozs. of food. This morning at 8:00 on 4 ozs. We are working with the GI docs to figure this out.

It doesn't help that Josh's spasticity and tone are very high right now.

Over the weekend Gary, Lisa, & Mitchell Friedman came for a visit, as well as Pop-pop Paul, Pop Bobby, and Aunt Wendy and Uncle Jeffrey. That is all for now. We will keep you updated as things develop.

Thanks again for all your messages and emails.

Steven

Monday, March 18, 2002 at 11:56 AM (CST)

Still waiting for seizure to show up. We are trying not to get frustrated during this process but it is challenging. Right now Josh is having his 15-20 a day but they are not showing up on the EEG. We are waiting it out. We might try to keep Josh up all night (a tactic to induce seizure activity) but we are debating next steps.

We are recovering from sleep depravation. Joshua decided on Friday night and Saturday night that sleep was not a good thing. In fact he ended up Saturady night waking up every 15-30 minutes. Needless to say Erica (who stayed that night) was very tired. SO last night I sent her home early. Last night Joshua selpt well, and did not wake up at all until 7:30.

Our next challenge now revolves around retching. We are trying to find the right balance when feeding him. Sunday at 3 AM he retched 6 ozs. of food. This morning at 8:00 on 4 ozs. We are working with the GI docs to figure this out.

It doesn't help that Josh's spasticity and tone are very high right now.

Over the weekend Gary, Lisa, & Mitchell Friedman came for a visit, as well as Pop-pop Paul, Pop Bobby, and Aunt Wendy and Uncle Jeffrey. That is all for now. We will keep you updated as things develop.

Thanks again for all your messages and emails.

Steven

Saturday, March 16, 2002 at 01:59 PM (CST)

Hey everyone…..Here we are spending the afternoon together at the hospital and still waiting for seizures to start showing up on the EEG. Joshua is having seizures, though not the bigger ones. We are stimulating him as much as he’ll tolerate exercising and sitting in his crib and chair. Josh is definitely seizing more in his chair. Sleep continues to be an issue as Josh is waking up routinely through the night with a jerk and some crying. We don’t have to pick him up, but he needs to be shushed each time. The doctor seems to feel that it is related to his increased spasticity. Tonight we are going to try some benedryl or more Tylenol. Let’s hope it helps. Mornings are tough for Josh with lots of retching, crying, and startles. We tend to hold him most mornings. Afternoons, he’s much more perky, especially for visitors. Josh visited with the Levins and Grandma Marilyn yesterday afternoon. This morning, Pop-pop Paul helped out and made for an extra giggly time. Joshua’s feedings have again been altered as he is having more difficulty with retching, gagging, and gastric emptying. We’ve also added erythromycin to the medication mix to hopefully help with motility/the gastric emptying.

Everyone here at the hospital keeps asking us about our extended stay here at the ‘hotel’. We just tell them that we’ve changed are mailing address and have already discussed plans with the hospital for expanding our room into a ‘suite’ with a master bedroom and kitchen.

Lots of sick kids here on the unit who we are desperately trying to avoid. The last thing we need is for Joshua to get sick. We are doing a lot of good hand washing and making sure that visitors with kids do not go to the playroom.

We have Joshua’s nurse, Andrea, coming tomorrow morning for a few hours so that we can get a break from the hospital as a couple. We’re planning on brunch. We also have another nurse lined up for the first seder of Passover so that we can at least be a couple with the rest of the family. Next year, watch out. Joshua will be all ready for the four questions.

That’s all for now….Erica

Thursday, March 14, 2002 at 07:19 PM (CST)

Hey....I just got home from the hospital, exhausted but eager to let everyone know what's new with Josh. Yesterday, Joshua was reconnected to the EEG monitoring but without a few electrodes that are in prime skin-breakdown areas. The sore on his right temple is healing but slowly. Joshua screamed throughout the hook-up process, which took about an hour. The EEG technician (aka Gramma Vonnie) was very patient with Joshua and is paying very close attention to scalp. After the hook-up, Joshua was in a pretty foul mood that lasted throughout most of the day. That coupled with the much-needed rainy weather made for a very difficult day for me and Gramma Marilyn. Seizures were only about 15 to 20 but we did not do much extra working with him due to his foul mood. I actually had him in is orthotics for a few minutes and Joshua took a bunch of steps again and was "running" around the room (probably to run away from me) while I was supporting him. The excitement was needed. Steven went to a Devils' game with a friend and Pop Bobby helped get to bed. OY. What an evening. Joshua did lots of crying. He went to bed just after 8pm but my excitement was shot when Josh was up many times throughout the night.

Joshua had a better day today in spite of not having had enough sleep. I survived the day better than I had expected as well. With the weather being so beautiful, we managed to open the window a crack and let in some fresh air. The healing powers of fresh air are amazing. Joshua's head was uncovered to leave the electrodes exposed most of the day. Seizures were stronger than yesterday, especially while sitting in his chair. The count was probably 20 to 25. Seizures are not yet showing on the EEG, but we're hoping they start to show up tomorrow or over the weekend so that data collection can begin in earnest. In the meantime, Joshua is tolerating his new formula and has already gained almost a pound. He is retching and vomitting more, but that's likely related to stopping Gabatril which affects seizures as well as spasticity. When Joshua has greater tone/spasticity, he not only becomes very rigid, which can be painful, but can also have GI symptoms like retching and delayed gastric emptying. We look forward to starting the Gabatril again. Joshua had visits today from one of his nurses from home, Teri, Gramma Marilyn, his friend Isaac and his mom Eli, and Gramma Ellen and Pop-pop Paul. A busy day all around.

We are hoping to get the information we need soon and realize that everyone's prayers are helping Joshua and us get through. Even the folks from pastoral care visit almost daily and convey that everyone there is keeping Joshua in their prayers. It is uplifting for us. I will not say that we are not exhausted, but I will say that we are confident in the process in which we have engaged our child. We know that life could possibly be better for our very happy and beautiful boy. Many thanks to you all for everything.

More to come.....Erica

Tuesday, March 12, 2002 at 08:06 PM (CST)

Hey everyone....I just got home from the hospital and dinner with my parents. I left Josh with Steven and his parents after he got a bath and shampoo. Yep, Joshua is still disconnected from the electrodes for the EEG because his scalp is red and sore. He has one open boo-boo that has to hurt him. We expect that he'll be reconnected to the electrodes, at least some of them, tomorrow morning. He thoroughly enjoyed having freedom from the head gear and teletubby look.

Joshua had some trouble falling asleep last night with medication withdrawl related symptoms but finally fell asleep around 9:30 and slept quite well until about 6am and slept for another hour from 7:30 to 8:30ish. I won't complain. After a somewhat cranky morning, Joshua perked up and had a really great afternoon. He giggled, talked, sang, stood for a long time, and even walked today. At one point, Joshua not only walked but was running across the room. Grandma Marilyn and I were about in tears while we were screaming in excitement. Josh was proud of himself until he got scared by what he was doing and started crying. It was good to see.

Seizures today were about 15 to 20, but none were too big. We are rather surprised that Joshua is not having more seizures without any of his anticonvulsants. But, it allows us to have the strength to get through some of the withdrawl issues. We have big question marks above our heads though. Let's see what tomorrow brings.

I must go to bed...Thanks everyone for your support, prayers, and love....We couldn't survive without it.....Erica

Monday, March 11, 2002 at 08:14 PM (CST)

Hi, thanks again to everyone who visited this weekend. Joshua saw lots of people and we really appreciate it.

Sunday Joshua spent some time with Pop-pop Paul. Debbie & Giordanna from the friendship circle and Amy, Craig, Jenna, and Carly Weiss. We where very happy to see everyone and so was Josh.

Yesterday was the last day of any seizure meds for Joshua. Today he went without any medication and as Erica said, "He is very cranky." And he was very cranky all day. We are hoping for an easy night.

Joshua is doing well with his new food since we left the Ketogenic diet and we are slowly adding more food.

Also today they removed the electrodes from Josh's head for 12-24 hours. Erica washed his hair but Joshua screamed as his skin on his scalp has broken down in various places from the electrodes. Later in the day he was happier to have his head free but soon enough the electrodes will go back on and the monitoring will continiue.

Joshua is having small "startle" seizures and we are waiting to see what happens now that he wil be off all meds. Last time it took 5 days before the seizure showed up clearly on the EEG.

That is all for now, we hope Joshua can sleep through the night because last time he was off meds sleep was difficult.

Thanks again to everyone for your well wishes.

Sunday, March 10, 2002 at 02:23 PM (CST)

Hey all…It’s been a couple days: but, in this case, no news is pretty good news.

Friday was a pretty good day. Joshua had a quite a few small seizures throughout the day, but still participated in therapy and tolerated my making him exercise a lot. He took a few steps and did some sitting. Grandma Marilyn was here and laughed and talked a lot with Josh. Joshua had visits from the Hunters and the Spitzes. He then had a visit from Grandma Ellen and Pop-pop Paul. Unfortunately, Joshua did some sitting in his chair that triggered lots more small seizures and a very big seizure that required a diastat. He was much better after that and fell sound asleep at bedtime.

Josh slept through the night and was in a very good mood Saturday. Pop Bobby helped out in the morning so that I could shower and Josh loved the visit. Extra special was a visit from Aunt Wendy and Uncle Jeffrey. After a bit of visiting and laughing and talking, Uncle Jeffrey fell asleep, then Aunt Wendy fell asleep, then Joshua fell asleep. I got my haircut during all of this. Joshua wore his orthotics for a bit yesterday but was ticked off about it. While yelling at us about it, Josh took six steps/ran to Daddy to escape me. That was good enough for us. Seizures were minimal for the day. We had a good evening, just the three of us, and he slept well.

Today, I got to sleep late and had breakfast at noon. Steven and Josh played with Pop-pop Paul for the morning. Joshua is in a very good mood but wants lots of attention. Lucky for him that Grandma Marilyn and Pop Bobby surprised him with a visit. Joshua had a bunch of seizures for the epileptologist while sitting in his chair. He’s already taken a few steps and done some sitting for Daddy. We’re still expecting some visitors this afternoon.

As far as the monitoring goes: Joshua’s seizures are still not showing up on the EEG. He’s off the Ketogenic Diet as of Friday and has started on a new formula called Peptamen Junior. He’s tolerating it quite well at this point. His skin already looks better and he’s not so dehydrated. We can’t wait for Joshua to gain some weight. Joshua is also off Topomax completely and will be off the Gabatril today. He’ll have a few days to get off the Keppra. I suppose Josh will be off of everything by Wednesday. We hope that about five days will be all it takes for the seizures to begin to show on the EEG for the data collection. This is the pace of progress. Joshua is also exhibiting a bit more spasticity as he is coming off the Gabatril, so we know that he’ll still need it even when all is said and done with seizure control. Josh’s scalp still looks pretty good but we’re checking it often for skin breakdown.

We really appreciate everyone’s support of love, prayers, notes, visits, dinners, etc. It really helps keep us going…..More to come tomorrow…..Erica

Friday, March 08, 2002 at 11:22 AM (CST)

Hello :-)

Today's Joshua update. He is doing ok. He is sleeping through the night which helps but does not want sleep during the day at all.

So far seizures have been about the same. We decreasing another seizure med right now, Gabitirl. Also after conferring with Dr. Katz the plan is to start to switch Joshu to a new formula to get his body out of ketosis.

Also yesterday Joshua had PT and OT and did well.

Last night Callie and Andrea Tresser brought us a wonderful meal of Chinese food and they spent a few hours talking to Joshua and us. He was very happy to see them and talked to them throughout dinner. It was also a nice break for us well.

Also, Jenna Fernandez sister, Rachel (who is 5) and is very compassionate, brought Joshua a pinwheel that she made for him at daycare. We are very touched by her generosity and she is very sweet and articulate for a 5 year old.

The Fernandez family moved up to a new floor for the night and will be discharged from the hospital today or tomorrow. Then they will wait in their apartment for test results to determine what surgery to do, then they will be readmitted.

Last but not least we saw Dr. Fried (the neurosurgeon) last night. He just stopped in to say hello and see how we are.

This morning Erica and Josh had multiple visitors from Linda Klein (Dir. of Special Projects @ HUMC) a hospital Board Member, a volunteer, a pastoral care visitor and I am sure a few others.

Thanks again to all of you who are checking this site.

Wednesday, March 06, 2002 at 10:15 AM (CST)

Good morning!

Yesterday Joshua was able to do a lot of standing and sitting. He even did some walking. When I arrived to the room from my trip to Baltimore he was so excited that he walked (took 5 steps) to get to me (with a little help from Mommy holding his hands). It made our day. Anyway it seems weird that we are hoping for seizures but that is what we look forward to so we hope to see an increase so the first phase does not take to long. Joshua spent some quality time with Grandma Marilyn and was really in a great mood. Also Pop-pop Paul and Aunt Jean visited last night and he talked there ears off until he became too tired.

Joshua slept well last night. He was out by 8:30 and did not wake up until 9. His seizure activity seemed to be decreasing as we are decreasing his meds and changing the diet. That is somewhat surprising since the opposite should happen.

Well this morning things changed and Erica told me that Joshua already had a Diastat to stop a cluster of seizures. So hopefully, this will be the beginning of seizures increasing.

We are down to one dose a day of Topamax, and after that we will start to decrease his other meds. Dr. Katz is taking things very slow with Josh as he does not want him to go into status.

Joshua is starting to express himself more with what he wants and doesn't want. It is exciting for us to see Joshua expressing himself. Even though the words are not out of his mouth we definitely understand him and he understands us. He has certain ways of telling us what is important to him and what he wants.

Thanks again to everyone for your thoughts...we really appreciate the messages of support and the time you all take to check the site everyday. Thanks again.

Monday, March 04, 2002 at 11:59 AM (CST)

Hi it's Steven.

Joshua did pretty well last night. He slept most of the night and only woke up twice for diaper changes. When he woke up he was very happy to see Mommy. Also, Stacey Bergman the unit Social Worker came by for a visit and Josh was happy to see her too.

Since he woke up with som much energy Erica had Josh standing and he even took a few steps. Then he went into sitting for a while.

All-in-all a good start to the day. We are still decreasing the topamax and adding more calories to Josh's feedings.

I am heading to Baltimore for tonight, a one night trip for a sales call while Erica holds down the fort at Hotel Hackensack. I will be back tomorrow to stay over at the hospital.

It was a lot of fun to see so many people yesterday and as Erica wrote earlier...laughter really does help.

That's all for now, thanks again to everyone for sending messages via email and through the site.

Steven

Sunday, March 03, 2002 at 07:59 PM (CST)

Hey everyone...Johsua's seizures were a bit better than yesterday. They did not cluster as stongly as yesterday, so we didn't even think about diastat for immediate seizure treatment. All that in spite of more difficult sleep. Josh was briefly awake a handful of times throughout the night. Why???? Breakthrough seizures, withdrawl from medications, generalized crankiness from sleeping in the hospital with lots of head gear??? Anyway, the epileptologist who visited today was encouraged that Josh's seizures are similar even though they are not yet showing up on the EEG. We've been decreasing Joshua's doses of Topomax daily and have also been changing his ketogenic diet formula mix to wean him off both. All of the above changes are certainly making a difference. As Steven said yesterday: It's got to get worse before it gets better.

Joshua had lots of visitors today. Pop Bobby visited early to help me with early morning routine and a bath. A Rabbi who is a chaplain at the hospital visited and said a prayer with us all. He remembers us well from our previous stays that the hotel.

Alex Van Houten and his family visited for a couple hours. It's amazing to see how well Alex is doing since his neurosurgery in September. It's so encouraging. He also spoke to Jenna Fernandez' family about what his experience was. I hope it was helpful. Their support for us is amazing. They've promised to visit more, and we are thrilled.

Aunt Wendy and Uncle Jeffrey visited for a couple hours as well. We laughed a lot. Laughter is an amazing healer of souls.

Although I am tired from interrupted sleep and the hospital trying to suck the life out of me, I'm doing alright. I came home fairly early and plan to go to sleep shortly. I miss being with my guys at home but know in my heart that we are doing what's best to help Joshua participate more in life without seizures interfering. What a hard process though.

Thanks for your support, love, and prayers.....Erica

Saturday, March 02, 2002 at 09:23 PM (CST)

Well, I am back from the hospital. It is tough to come home without Erica and Josh. I know what we are doing is right but the house feels so empty without them.

To build on what Erica wrote last night Joshua is definitely having increased seizures. It is tough to watch him go through this slow process and we hope it will be for the best.

He did a little sitting in his chair today. Played with some of his toys and yelled at the nurse while I wasn't in the room. Once I returned he stopped yelling, looked at me and smiled. As the nurse left she said, "Joshua, you only wanted Daddy?"

He gave a huge smile with that and looked at the nurse with a little grin. What a stinker but I am proud of him for knowing what he wanted.

Pop Bobby visited this morning and played with Josh while he sat up for almost an hour. Later in the day Grandma Ellen and Pop-pop Paul visited. As usual Joshua chatted their ears off.

We also received a huge bunch of balloons, for Josh, from my office...I want to thank all of them for thinking about us. Also, John the owner of a local pizza restaurant sent lunch and dinner to our room at the hospital for free! Let me tell you it was outstanding food and John is a wonderful person. Not only did he make our day but he sent food to the Fernandez family from Georgia. A huge thank you to John as well.

Last but not least you will find a link at the bottom of the page for Jenna Fernandez site. They are from Georgia and after meeting the Moss family decided that they needed to come to Hackensack to make their daughter better. Feel free to check out their web site as well.

Thanks again to everyone for your support and we will get through this, it will just get worse before it gets better.

Friday, March 01, 2002 at 08:43 PM (CST)

Hey everyone....I just got home from the hotel, very ready to sleep in my bed tonight. I left Joshua about ready to go to sleep in his new digs. He was transferred from the PICU to the EMU (epilepsy monitoring unit) on the pediatric floor this afternoon. We are all relieved to have some quieter, more private space. This also means we can sleep in the same room and have a private bathroom...the little things of life.

Joshua had many more seizures today. He is responding to the decrease of Topomax and an increase of calories and carbohydrates. He is also becoming like velcro to me throughout the day while refusing to nap or even sit without me holding onto him. Yep, things are intensifying. We knew when we got into this, though, that things have to get worse, before they get better. We have plans to continue reducing the Topomax tomorrow and each subsequent day while also increasing calories and carbohydrates in the ketogenic diet. We must also then have plans of how to handle if the seizures intensify too much. We hope they won't but must plan for if they do.

Once again, we are getting incredible support from the folks at the hospital, many of whom we met during our last visit to the "hotel". Some new support from a family from Georgia who came to NJ for treatment after witnessing the changes in Mallory Moss. We wish them the easiest of times ahead and pray for their daughter Jenna to be seizure free soon.

Grandma Marilyn was a great support today. Grandma Ellen and Pop-pop Paul will be by tomorrow. Aunt Wendy and Uncle Jeffrey will be by on Sunday. And, I'm sure that Pop Bobby and Grandma Marilyn will be by again on Sunday. Lots of great family support. We all laugh a lot together as we find comfort in the company and confidence in our mission.

More tomorrow.......Erica

Thursday, February 28, 2002 at 09:33 PM (CST)

Hi everyone!

I just got back from the hospital. Joshua was extremely tired when I left.

We played for a little while tonight. Also a music therapist came by for us to all sing songs together.

Joshua knows that he is not at home and many of the different bells and noises on the floow wake him up. We are hoping for an easy night. As I left Erica was rocking him to sleep.

We are adding more calories to his diet and changing the topamax from 37.5 mg 3X a day to 25 mg 3X a day. We will see what happens next.

Thanks again to everyone for your words of encouragement.

Wednesday, February 27, 2002 at 08:27 PM (CST)

Hey everyone....I just got home in time to watch West Wing. See...I am being good to myself during all of this.

Joshua was a bit cranky today. I guess he's adjusting to being connected to the EEG leads, the noises of the PICU, the different crib, etc. He wound up sleeping last night with some difficutly falling asleep and awake for an hour or so in the middle of the night. Though, he did not get up for the day until after 10 am. We were busy today getting over the first day bumps of the hospital. A couple big issues, diet related, were addressed.

Seizure count is less than 20 today, but Josh did not tolerate much activity. Josh's EEG looks a bit funky from the Diastat and Klonipin (aka valium) yesterday but is settling. The main change of the day is a decrease of Topomax, an antiepileptic that can also affect weight and muscle loss. (That was news to me today.) Next change is an increase of calories to the diet. Let's see what Josh looks like tomorrow and think about decreasing Topomax more.

Hopefully Joshua will be moved from the PICU to the main peds. floor in the next 48 hours. We are looking forward. It'll be much more quiet and comfortable. I hate not being able to sleep in the same room as Josh. I'm so used to being in control and responding to Josh's specific cries. I'm the Mommy...not the nurses. Josh is reminding them of that. :)

I met a family on the peds floor today who are in with their 6 year old who is in for the same reasons as Josh. They seem very kind and a probable source of mutual support. It is essential for our survival.

And we will survive....More to come tomorrow and thanks for your support.....Erica

Tuesday, February 26, 2002 at 09:03 PM (CST)

Arrived! We checked into HUMC (aka Hotel Hackensack) today. Things went smoothly. I think it was because we gave Joshua a Diastat to calm down his seizures from this afternoon.

We are right now in the Pediatric Intensive Care Unit (PICU) for a few days. Right now the regular pediatric monitoring rooms are full so we will be in the PICU until a room opens up and then move upstairs.

Joshua did well with the hook up to the EEG equipment, in fact, he didn't even get cranky. Erica and I managed to keep him occupied and he did fine.

Pop-pop Paul visited to see how Josh was settling in. Josh was very happy to see him.

The doctors came by tonight and the plan for now is to increase the carbs in Joshua's feeding tomorrow and then look at decreasing a medication. We are going to take it day-by-day and let Josh tell us what to do next.

While in the PICU it is difficult to reach us so your best bet is to post a message here or email us. Thanks again to everyone for your support.

We will write more soon.

Monday, February 25, 2002 at 08:24 PM (CST)

Well.....We're packing up and getting ready for Joshua to be admitted to the hospital tomorrow afternoon. Steven is taking the day off, thankfully. The hooking up to the EEG is not all that fun for Josh or for the one who has to help hold him and calm him. I'll stay with him tomorrow night as we get right into "hospital mode".

Seizure count is over 20 a day. Josh had a rough weekend, so we stayed home and kept the excitement to a minimum. It seems that he has geared up for the hospital already and is telling us that it's time for him to go in. He's even having seizures while laying down and standing.

Steven played hockey on Saturday morning with lots of big boys. It was a great release, but he's still sore! I'm thrilled he played. :)

Thanks everyone for offering your prayers and support already. It's going a long way. More updates to come.........Erica

Sunday February 17, 2002 4:10 PM CST

Hey all….Sorry it’s been so long. Life’s been exciting. Since our last post, Josh has been doing so much more. He is taking more steps, especially to get to Daddy; he is saying lots of new sounds and words; and just last week he sat up on his horse, Dakota, for the whole half hour session. We are amazed.

On Super Bowl Sunday, we all got together with Mallory Moss and her family, Alex Van Houten and his family, and Yvonne from the hospital. It was a blast. Mallory and Alex are both post neurosurgery from September and are doing quite well. Very encouraging for all of us Gendel family.

Joshua’s seizures are on the increase at this point. He has lost weight and is losing muscle mass. We have increased his calories to help him stabilize weight, but have also had to sacrifice seizures. The seizures have gotten longer and stronger and at times cause Josh to get a little gray in color. Car rides have become harder as have all types of seated positions. With all of Josh’s progress on the diet, we risk him losing the progress he’s made as well as losing the ability to make progress down the road. The dilemma now is whether to give the diet longer to work or realize that he can’t be on the diet for ever, his seizures are worse, and drugs alone are not likely to ever be a real treatment option. Of course, we realize the latter points.

We always knew surgical options for treating Josh’s epilepsy would need to be seriously considered but we did not know it would be this soon. We have spoken to the epileptologist, neurologist, neurosurgeon, and had a second opinion with a neurologist/epileptologist. Our next steps are that Josh will be admitted to Hackensack University Medical Center for EEG monitoring off all medications and the diet to try to localize, at the very least, a hemisphere where the seizures originate. If that can happen with some high percentage of accuracy, then craniotomy and grid placement will likely happen after a short break at home from the monitoring. The doctors are not ruling any options out at this point – resection, calisotomy, or Vagus Nerve Stimulator. Joshua will also have to come off the diet for the potential surgery to gain weight and also avoid extra risks associated with the diet and surgery.

Frankly, Steven and I and our families are scared out of our trees about prolonged hospitalization and surgery for Joshua. We only want the best for him. So we are going to give him the best chance at a life he can live with minimal seizures and maximum development by considering neurosurgery while he is young. While Josh’s brain still has the plasticity to ‘rewire’ itself and grow without the harm of so many seizures to screw things up further.

We are trying hard to prepare for going to the Hotel Hackensack again by having family pictures taken, getting haircuts, cooking, and baking. I am writing from a vacation for myself in Tulsa, OK while the guys bond and play at home. This is a much needed break for me to re-energize before a couple months of extra stress for the family.

We ask that you all keep Joshua in your thoughts and prayers and continue your incredible support for us. We’ll post more frequently in the coming weeks as things move along…….Erica

Friday January 25, 2002 10:17 PM CST

Sorry this has been a long time coming but, do to holidays, end of the year stuff etc, life has been too busy to update the site. A warning, this is very long but I hope you enjoy it.

Anyway on to the news!

We are all doing great. The holidays went well, New Year’s was fun and I closed a big sale with Unisys. A great way to end the year!

Joshua seems to be getting into a groove as we start 2002. He is starting to take small steps at Medek. On one visit he even took 4 steps in a row across the table! Needless to say tears of joy were flowing from all of our eyes. Hippotherapy is also going well with Joshua sitting up and really enjoying his horse, Dakota. He has this “Mom, look at me, I’m on a horse” smile when he rides. Also, PT and OT are doing well and his therapists are happy with the progress he is making. Although Joshua is very much acting like a 2 year old and is doing a lot of yelling at his therapists and nurses. At music he is singing out loud and strong.

His seizure count runs about 10-15 a day, which is ok. We would love for him to have none but we will take what we can get. We are planning to meet with the neurosurgeon in February just to discuss our options and do some planning for the future.

We recently celebrated Erica’s birthday. She turned 30 on January 5th. To celebrate we planned a 10-day vacation in Florida. Five days on Sanibel Island and five days at Walt Disney World. We left for Sanibel on Erica’s birthday. Getting through security was challenging but we made it down ok. We stayed at the Sundial Beach Resort in a 2-bedroom condo with a view of the Gulf of Mexico. Joshua slept in a big boy bed for the first time and as Erica says, “he was really cute!” We were hoping for some sun and some time for Erica to relax and get some sand in her toes. The first day we woke up it was rainy and a little cold. In the afternoon however, the sun cam through and we had a nice walk on the beach. We did some shelling that we all enjoyed. That night things changed a bit as Joshua started acting cranky. He was having trouble sleeping and through a combination of things he got sick. Joshua has a little cold before we left and now things were worse, he developed a fever, a cough, his heart rate was up and his oxygen saturation was down. So at 11:30 Sunday night we decide to go to the emergency room. But which one? Luckily, my parent’s friends, the Fosters live in the area. We call them and they recommend the only good hospital in the area. We are about to leave when Joshua falls asleep. So we go to sleep and decide to take him in the morning when we wake up. Monday comes and we do not sleep at all, Joshua sleeps ok. We get up and get ready to go; Joshua decides to sleep until 11:00 am, go figure. Well off to the ER. This was truly a whole day wasted. We arrive at 11:30. They do not see us until 6:30 pm. Thank goodness for the Fosters who came over to see us and took us out to lunch. It was great seeing them. A huge thank you to the Fosters for your help. While in the ER they run some tests on Joshua, x-ray, etc., we do not get along with the doctor. Let’s just say he has an attitude and we do not appreciate this. He said he can tell how he is by LOOKING at his lungs, we ask him to listen, he seems put off by this. Anyway at this juncture we can tell the doctor wants us out of his ER. He gives us a prescription, says it might be a bacterial thing and off we go. We get back to the resort around 10:30 put Joshua to sleep and I run out for some food. This is our last day full day at the resort. We decide to take a drive to Captiva Island and explore. It is a beautiful place with huge homes. The weather was nice so we found a restaurant called RC Otter’s and sat outside to eat. Erica had a crispy Grouper sandwich while I enjoyed a yummy shrimp burrito. Anyway we drove around Captiva to the tip of the island when Joshua started to melt. He was not feeling 100% and needed a nap. Back into the minivan and off to the resort. Joshua went to sleep, I watched the world go by and Erica went to go shopping at C. Turtles. It was a cute little clothing store on Sanibel. For dinner we went Italian to a place called Matzaluna and each enjoyed individual pizzas. While at dinner, Erica was holding Josh and his feeding button came out of his stomach. This is a minor issue for us but we did not know it would be a prelude of things to come. Back to the Sundial for bed, Joshua, and packing for us. Tomorrow is Wednesday and we will be off to Walt Disney World (I could taste the excitement). We pack up the car and have a goal of getting out by 9:30 because I planned a day of beauty for Erica as part of her birthday present. We left a little later than planned and headed up Route 75 toward Orlando.

Final comments on Sanibel Island
Sanibel was a beautiful place. We would like to have had the time to explore a bit more. The weather was not so good and we were hoping for more sun and warmth. We also learned that Sanibel is not that accessible for a disabled child but we would never have known this unless we visited.

On to Mickey’s House
With Klonipin on board Joshua we start our trip to Disney World. Klonipin helps decrease Josh’s seizure and when we are on long car or plane trips the doctor’s recommend we give him a small dose. We drive up the highway and stop just outside of Tampa for a quick lunch. As we head up Route 4 towards Orlando, we decide that time is running short and we have to cancel Erica’s day of beauty. I am more disappointed than she is (maybe because I planned it out) but it is for the best. We have to get to the hotel, check-in and then we have to go to the airport to pick up Richard (our nurse). He is flying in from NJ. We know we are getting close when we see the Disney electrical plant and the wires that are shaped like Mickey’s head! How funny. Erica is talking a mile a minute and is bursting at the seams with excitement. I am just taking it all in. We exit off the highway and get onto property and the funniest thing happened Erica let’s out this big sigh….says that she feels so relaxed now because she knows what to expect. I am chuckling inside.

We check-in at the Wilderness Lodge for our 1 bedroom villa, our room is not ready yet so we walk around the resort. This is our first time staying here, in a word beautiful. Joshua is starting to get a little cranky so we see if our room is ready and a nice cast member (CM) says it is. We get to the room when I decide to check the time of Richard’s flight…it has already arrived!! Quick I head to the airport, leaving Erica and Joshua to get settled in room 3514. Richard was waiting patiently at the airport for about 20 minutes when I got. We stopped at Publix on the way back to the Wilderness Lodge and I gave Richard the update on our trip to the ER. We decide to eat dinner at the Whispering Canyon Café. All I can say is what a meal! An all you can eat smoked meat fest brought right to the table. Richard and I talked about the wonderful sausage the whole trip! Back to the room and it is time for bed. Little did we know that another trip to the ER was looming.

Joshua slept in our room in a crib, while Richard stayed on the couch in the other room. The problem with the crib is that the sides do not go down and it is just a big metal frame. This means that we have to drape Joshua’s feeding tube and other cords over the side. Around 1:30 in the morning Joshua woke up so I changed his diaper, not a big deal. Around 7:30 am Erica and I hear him giggling in his crib, which makes us laugh. We are so excited because today is our first full day and we are headed to the Magic Kingdom to see Mickey! I go to the crib to get Joshua and roll him over and realize the sheets are all wet and he is all wet. Uh oh. I notice his button (the device that goes into his stomach) has popped out. Now as I said earlier this happens no big deal. Except when it has been out of the hole for more than 2 hours. Which at this point it has. The hole has closed up! Isn’t the body amazing!! This is a MAJOR problem. Joshua gets his food, medicines, burps, etc., all through this opening and it is not closed! We carry 2 spare buttons with us and Erica and Richard try to get it in but no luck. I run to the phone to find out where the nearest pediatric ER is and call them to let them know we are on the way and to have a surgeon ready. We quickly gather his stuff call down for the car. I am racing about 90 miles per hour in morning rush traffic. At times driving on the shoulder to get to the hospital. It took about 25 minutes to get there. In the car Joshua has 3 seizures because he did not get his meds. Otherwise he is happy. I throw the keys at the valet and we run in. They are expecting us the nurses at the front desk write down some medical info on Joshua and compliment Erica on her medical information chart that she made for Josh’s doctors. We carry it with us wherever we go. The quickly get us into a room. We wait or pace saying hurry up, Richard goes to find out what is taking so long. Finally, a peds doctor and nurse arrive. They compliment Erica on her Josh information chart as well. We like this doctor much better than the one in Sanibel. She says that she will try to push the button in the hole before we look at surgery. She pushed really hard and SUCCESS! The button went back in and the hole opened. The doctor applied more pressure than any of us ever would have. Joshua screamed through the process but once we started to feed him he felt better. After some observation we went back to the hotel. Joshua took a nap; we decided to make a day of it and when he woke up headed to the Magic Kingdom.

Off we go, I do not remember all of the details. However we did ride on Buzz Lightyear, Erica and Richard did Space Mountain and Pirates of the Caribbean. We all did Pooh and It’s a Small World. We went over to meet Mickey Mouse and Joshua just loved it! His eyes got real big and he started talking to Mickey, laughing and smiling! It was a great moment for all of us considering how the day started. We then went to meet Pooh, Eeyore and Tigger. Eeyore and Tigger were great and the swarmed around Joshua. Joshua said three new words when he met them. He struggled for about a minute to get the words out and when he finally said them his brain just went on overload and he had 3 intense seizures. We were very excited though that the characters brought out new things in Josh. He met Pooh but he was to exhausted from the seizures to smile. We grabbed a quick dinner in the park and then headed back to the room.
Today is Friday and we are very excited as Aunt Wendy and Uncle Jeffrey decided to fly down to join us. Our great travel agent (thanks Nanci), was able to get them in the hotel right next to ours! I picked them up at the airport that morning. We all went to MGM and did several rides. Joshua was cranky most of the day. A little tired still from the day before and just overwhelmed by so much stimulation. Richard watched Josh while we went on a ride and when we returned, Aunt Wendy and Uncle Jeffrey are holding Joshua when he looks up at them and clear as a bell says, “I love you!” Well that was it; tears start flowing from Uncle Jeffrey. He just is so excited, his trip is made! We decide to go see the Muppet movie to relax. Joshua gets very cranky and I take him out of the theater. While in the Muppet gift shop I bump into the cutest little girl named Alexis. She is 3 ½ and has cerebral palsy like Joshua. Well Joshua instantly starts flirting with her, talking to her and reaching out trying to touch her. It was sooo cute! Erica, Richard, Wendy and Jeffrey come over after the movie and we all spend time watching Josh and Alexis. We say good-bye to Alexis and her Mom and head back to the room for a break. Richard is going to watch Joshua tonight while the 4 of us go out for a great dinner at Narcoosee’s. We see the fireworks from the Magic Kingdom and Jeffrey…well I will leave that private but let’s say it was very funny and he will NEVER live down what happened.

Saturday we start with a character breakfast at the Polynesian. The place is empty; maybe 12 tables are being used. Joshua screams in his wheelchair, he wants out, he only stops when a character comes by. He sees Mickey, Pluto, Goofy, and Chip and Dale. The place was so empty we saw each character at least 4 times. I love going in January. Joshua also presented Uncle Jeffrey with a gift (actually we bought it for Jeffrey and placed it in Josh’s hand) it was a miniature wind up Monorail. Uncle Jeffrey is so excited, he is almost crying! We are all laughing and really relaxing and enjoying ourselves. Now it is off to the Animal Kingdom. We go on the Safari, where a rhino charged our vehicle, and saw lots of animals. We do the walk to see the Gorillas, catch It’s Tough to be a Bug (very funny) and see the Lion King show. After Lion King, which Joshua could not sit through, too noisy, we meet Minnie Mouse, Donald Duck, and Daisy Duck. Aunt Wendy manages to whisper to Daisy that she is her favorite, we all laugh because it is loud enough for everyone to hear. We decide to head back for a rest. On the way back Erica says, “I can see the value of purchasing a membership in the Disney Vacation Club.” Ah the bug has bit her. I am happy that she is soooo relaxed and truly amazed. The girls go and get messages in the Wilderness Lodge Health Club while the guys hang out. That night Richard watches Josh; the four of us go to see Fantasmic. What an amazing show! We realize it would be too intense for Joshua and probably would cause a few seizures. After we head to Spoodles for another great meal and then walk around the BoardWalk playing games, laughing, relaxing. We just kept having an amazing time and did not want it to end.

Sunday comes and it is a little sad, our last full day and Wendy and Jeffrey have to leave that evening to head back to New York City. We head back to the Magic Kingdom in the morning. Jeffrey and I are walking together when he says, “Can we do this again and I don’t want to go home tonight.” Five minutes later he says the same thing to Erica. Very funny. Joshua is really cranky today so we try a couple of rides, like Jungle Cruise, Tiki birds, etc. He is not happy. We are going to do Buzz because Jeff and Wendy have never seen it and it breaks down. Wendy and Erica go on Space Mountain and Wendy screams her head off, while Erica laughs. They had a great time. Richard and I take Joshua back to the room for a nap. I get them back and settled and then head back to meet up with Erica, Wendy, and Jeff. Now my brother would say that I am a smart-ass, and at times I am. I just like to laugh a lot and have fun. On my way back into the Magic Kingdom people are starting to line up along Main Street for the parade. Well being the joker that I am, I walk right down the middle of Main Street (30 minutes before the parade starts) and start waving at all the kids and parents they wave back. So I performed my own mini-parade starring me! I meet up with the gang so we can all ride Buzz. Jeffrey kicks butt and beats us all handily. The parade is going on but the park is so empty we have no problem walking behind the people on Main Street. Now one Gendel requirement at Disney is to ride the monorail so we take the trip from Magic Kingdom to Epcot so we can ride Test Track. Jeffrey and Wendy love it, as do we. We had no wait at all. Epcot, in fact all the parks have been empty all week. After Test Track we head back to the Lodge/Villas. We say our sad goodbyes to Wendy and Jeffrey as they head to the airport. We decide to head to Downtown Disney for some quick shopping. Joshua is really tired so this is a quick trip. Richard decides to stay and explore. We head back to room to do laundry, pack, eat, and to put Joshua back to bed. Nothing like clean laundry to take back to New Jersey with you. We fall asleep knowing we had a crazy yet fun vacation.

Monday we wake up, finish packing and head to the airport. We had a great time and on the way to the airport debate the merits of a vacation club membership. I am amazed that we are even talking about this. An uneventful trip home. Now we are back to our crazy lives with therapies, doctor appointments, and work. We had a great time and are sad to see the trip end.

Final thoughts
The vacation was much needed and a lot of fun. We missed our summer vacation due to our extended hospital stay so we really looked forward to this. Wilderness Lodge is a great place to stay and the Villas are nice, a much calmer atmosphere than the BoardWalk Villas. I think whenever we take a vacation we will bring a nurse as it makes the trip so much easier. Richard was an amazing help is a top-notch nurse and is a great guy. We laughed a lot and it really helped. Having Aunt Wendy and Uncle Jeffrey around helped take our minds off of the ER visits. Mentally we break up the vacation into the Sanibel, ER, and Disney parts. We can say that the Disney parts were the best. I hope you enjoyed this update about Joshua and our trip. Drop us a note to say hi if you can.

Sunday, December 23, 2001 at 04:20 PM (CST)

Hey all...Hope the holidays are good for you. Joshua seems to be enjoying the hub-bub of the holidays...music, gifts, people...

On the health front, Joshua's seizures are back to the five to fifteen a day depending on whether we go out for a ride in the car. The car continues to stimulate lots of seizures that are long and strong. The highchair does it as well. We more readily give Joshua meds to help control car seizures at this point. We both feel tremendous guilt to have to drug our child just to go out in the car, but we would rather drug him than be prisoners at home. The meds do not knock him out, though. The doctor is working with us to help try to control the seizures and will be available for consultation for our upcoming vacation.

Oh, we're taking a trip for my birthday. Josh will be coming with us along with a nurse for at least part of the time. The doctor has assured us that he will help us manage any situation that may arise while on our trip. The doctor wants to see us get a break as much as we want to get a break.

Further on the health front...Joshua has begun retching again. Unfortunately, the honeymoon of no retching lasted from mid-September only until this week. He has begun again along with some vomiting. Joshua is also having excess residual in his stomach that he is just not digesting. We are concerned about hydration. Let's see what tomorrow brings.

Joshua is still making progress with therapies. He is now taking more steps at home. He is making his toys work more often and showing us just how much he is able to understand by seemingly answering our questions. Joshua showed his speech therapist that he knows how to say "more" and communicates the things that he enjoys.

We wish you all a very happy and healthy holiday. We're glad we can be home as a family for this holiday.

Erica

Friday, December 14, 2001 at 08:48 PM (CST)

Hey all...Life keeps getting more amazing with Joshua. He's progressing further in therapies and amazing even the doctors.

Joshua's seizures are a bit more than before as we have decreased the morning dose of Keppra. We met with the doctor last week and decided that we'd like to try to get the same level of seizure control with less morning sleepiness (the doctor actually used the big word somulence, if I even spelled it correctly). He said that we could have a couple of rough days as a result and this could even be a wrong move. Gotta try to find out. He is impressed that the diet is effective and explained that the ketogenic diet has actually altered the chemistry of Joshua's brain at this point. With the change he can now reach more developmental milestones. As of this point, we are willing to continue trying the changed dose through the weekend. We are concerned, though, that the seizures have increased in number, length and strength. Wednesday evening, we watched Joshua in a seizure cluster where he had a couple of his usual seizures where he is completely rigid and his head is pulled right. Instantly, we watched the seizure cross to the other hemisphere as his head was pulled left and he had a strong seizure that direction...very unusual. Joshua has very few seizures to the left, but this was quite different than ever before. We continue monitoring.

Joshua helped Grandma Ellen celebrate her 60th birthday this past weekend. They sat together for most of the cocktail hour of the party keeping her pleasantly occupied and quite happy. The highlight of the party was singing "Happy Birthday" to Grandma.

Music Class has been encouraging even more verbalization from Josh. He has been singing along through many more songs and is showing much more awareness of what is going on in the class. It is a highlight of his week. Singing the songs from class while at home helps do everything better as well.

Joshua is pushing switches and buttons on toys with much more accuracy, more purpose and more awareness of what he is doing. He is now getting enjoyment from making toys work! He is starting to play a bit more by himself both in his chair and while on the floor. While on his stomach, he lifts up into "puppy position" and checks out himself/the other little boy in the mirror and is reaching for toys. Last Friday, Joshua rolled over twice from that position! He hasn't done that in a long time.

It's Chanukah!! Joshua loves lighting the menorah. We turn out the lights so that Joshua can see the candles. He loves when we sing the prayers and lights the candles. He gets so excited that he practically tries to jump out of our arms every night. Josh is getting the family tradition that we have wanted our home to have. It's amazing. On the fun side, Joshua likes unwrapping presents. He needs some help to get the paper off but loves the process of unwrapping.

Joshua just seems to be understanding the world around him so much more. He is processing things in a more sophisticated manner. He is manipulative. He likes to play silly games, especially with Daddy. And, there had better be time for tickling when Daddy gets home. Joshua is identifying his toys and is communicating when he wants more of something. It is as if we can see inside his brain as it functions. We are in awe of the human brain's many wonders.

Our life in this chaotic family is exhausting and wonderful. Every day is a wonder. I find myself with tears in my eyes almost daily at the miracles in our child. The joy he gets from talking on the phone, seeing family, friends, therapists, nurses, Dakota, and toys....the utter happiness in his total body smile....the love that he shows to all he encounters....the way he says "Mom" that will melt ice in the frozen tundra....the way that I know that all we do for Joshua is good...For all of this I know that I am blessed. Even if this may only be another honeymoon with good functioning, I know that I am blessed with an extraordinary gift.

Steven and I wish you all a holiday season and new year filled with blessings everyday. Thanks to you all for your ongoing support and love.

Erica

Tuesday, December 04, 2001 at 06:30 PM (CST)

So sorry it has been so long since the last update. Lots has happened since our last post. Joshua has been doing incredibly well. We are truly amazed at his ability to bounce back. Joshua is now functioning beyond the all previous levels.

Seizure count is typically 5 to 10 a day. However, today was a bad day. An erupting molar and the tail end (hopefully) of another cold don't help. We'll see the neurologist again on Thursday. Seizures continue to be worst in the car. Gramma has been helpful going to Hippotherapy on days that Josh doesn't have a nurse (or Mommy's sick). Joshua is still on the ketogenic diet as well.

We've all been sick and sharing our germs with each other. Josh is the only one not on antibiotics at present. In spite of that, we're enjoying he warm weather and taking Josh to the park to go on the swing often. Joshua enjoys preparing for and remembering the swing. He is making sense of the meaning of "the park" and "the swing" and loves to talk about it.

Cowboy Joshua is riding Dakota really well. Today, Joshua sat up with great control and happiness. His mouth was agape as if to say, "Hey, look at me. I'm doing it!" He sat in a little saddle and everything.

Yesterday, at MEDEK, Joshua was doing an exercise for standing and took 4 steps on his own! He screamed in fear the whole time but made himself mobile on his own. Steven and I watched in amazement with tears running down our faces.

Today, Joshua woke up from his nap quite happy. I asked him to touch my nose; after much effort, Joshua found my nose a few times. I told him he was a good boy and how great it is that he found Mommy's nose. Josh kept touching my nose and then said "Mommommommy no." He said "Mommy's nose" and knew what he was referring to. He also strung two words together. What a wonderful day.

We did see Alex before Thanksgiving. He is doing quite well with no seizures and most of his strength and energy back. The family is great. We had a really nice time with them and enjoyed a delicious Sunday Italian dinner.

We hope everyone had a good Thanksgiving and is enjoying the holiday season. Thanks for all of your ongoing support....Erica

Saturday, November 17, 2001 at 09:48 AM (CST)

Hey all. We continue to be amazed by this very handsome little boy! He is doing even more this week and his cold is all gone. Joshua is participating in therapies at about the same level as he did in July. Hippotherapy has shown even more improvement than ever before. He actually acknowledged Dakota and had a conversation with him. Dakota checked out Josh this week and made him laugh. Joshua sat up holding his head high while riding. We couldn't be happier.

Joshua is understanding even more than ever. This week I asked him to show me Mommy's nose and he popped me in the nose. Tears everywhere....that would be tears of happiness. I was putting his shoes on yesterday and asked him to get his shoes; Joshua turned, looked at them and touched them with his hand. Joshua is also following instructions to press switches on toys more than last week. He also sang along at music class more than ever this week.

Seizures continue at the about 10 - 15 a day. Car rides continue to be the worst part of seizure activity. We've weaned him off one of his anticonvulsants and will hold here for a little while.

Josh had a well-child visit to pediatrician this week and gained back about half a pound. We spoke to the gastroenterologist this week as well, and he is thrilled that Joshua has improved so much. We are trying to enjoy this as much as possible for as long as Josh is doing so well.

We will be visiting with Joshua's across the hall neighbor from the Hotel Hackensack tomorrow, and we can't wait. Alex had a resection and hasn't had any seizures since the surgery. He and his family have been through so much and have been a tremendous support for us.

We also hear that Mallory is doing quite well. She will be starting back at school soon on a modified schedule and is getting lots of strength back. She is also have a wish granted through the Make a Wish Foundation. Her family has been approached to speak to different groups on many different occasions and may be featured in People Magazine. Lots of excitement for them. Their son also had a surgery last month and is improving quite well. We wish them much love and look forward to seeing them on a trip North for a follow-up doctor visit.

Joshua's friend Patrick is in the Hotel St.Barnabas now for a month and a half and is quite ill. We pray for him and his family to be healthy and home together soon. Today is Patrick's 5th birthday. Happier celebrations are sure to come.

That's the main stuff to cover. Happy Thanksgiving to all of you and safe travels if you will be doing so.

Thanks for the support....Erica

Friday, November 09, 2001 at 09:49 AM (CST)

Sorry it has taken so long to update the page. Joshua's nursing has changed due to lack of nursing availability, so life is a bit more hectic here.

Joshua is returning to his regular personality and abilities even more quickly than we had hoped! He's a non-stop chatter-box. He just doesn't shut up. We love it. He's even saying more words: Brown Bear, Cow, over. He's also understanding much more. Joshua has begun to hit the buttons on a toy he's had since May. He is following our prompt to "hit the buttons" and hitting them with both hands with incredible accuracy! Tears of joy are flowing from both of us.

Since we've added some calories and carbohydrates into his diet (and yes, he is still on the ketogenic diet), Joshua has more energy to participate in therapies and is using more muscle strength. This week at hippotherapy, Joshua did much more than he did last week wich is far more than when he went on Dakota after his discharge from the hospital. The PT is amazed at the difference as well. He is also sitting in his chair with more stability and trying to do more independent sitting on the floor.

Unfortunately, Joshua picked up a nasty head cold from a nurse. He is now known as the "boogie boy", and that's not for his dancing abilities. The cold isn't slowing him down much, though. Josh still wants to play just as much as before the cold.

We visited the neurologist yesterday. He's very impressed with Josh's overall improvement. Josh's seizures are 10 - 15 a day. A definite improvement from 30 plus a day. Any surgical discussions have been put on hold for now, unless the seizure count goes the wrong way. We are amazed just as the doctor is amazed. Joshua even wanted to interrupt Dr. Katz with his own thoughts on the subject. The doctor instructed us to take a break and go on a vacation. Unfortunately, he couldn't give me a good time for us to drop Joshua off at his house. :) We're just going to keep on doing what we're doing: get rid of the cold and try to stay healthy, reduce some anticonvulsant medications, and have fun.

Speaking of fun: A nearby community with an incredble park/playground recently installed wheelchair accessible platform swings. Joshua has been on the swing twice and loves it. He understands that he was at the park and on a swing. Josh repeated "more" and "higher" while being pushed. We'll visit often.

Steven is very busy at work lately. We look forward to weekends for family time. Maybe a vacation will be down the road.

That's all for now. Thank you all for your support. We can't even believe the response from this site! We'll update once a week at this point. We've go to go play......Erica

Tuesday, October 30, 2001 at 08:19 PM (CST)

Hey all...Josh continues to perk up. We've increased his carbohydrates and calories. Now, Joshua is more chatty and animated. He's playing more with toys. Most of all, though, he's smiling.....alot. We are so thankful that he's coming back.

Josh is still in ketosis in spite of the increase of carbs. The seizures are in the 10 to 15 range over the past few days. We'll see how he is over the next few days to determine if he will come off the diet completely and go back to prior fomula with some alterations. In the meantime, we let him build strength and gain weight.

Joshua had a great time at music class last Friday. He sang lots of songs and smiled at everyone. I went away over the weekend to a seminar, so Joshua and Steven held down the fort. Joshua helped his daddy at work on Sunday (with a bit of help from my dad, aka Pop Bobby). Joshua is even participating in therapy more so that we can do more with him at home. He worked really hard on Dakota today at hippotherapy. Even sitting up a bit by himself.

Lots of good news. We're even starting to feel like humans again.

That's it for now.

More to come...Erica

Thursday, October 25, 2001 at 10:10 AM (CDT)

Hey all...Joshua is much happier this week. His personality seems improved. Energy is low but he is less miserable. Seizures remain anywhere from 15 to 20, with a high yesterday of 25 plus. Yesterday's high, of course, was especially for Dr. Katz.

The results of the PET scan are back. The results are similar to those of the SPECT scans, inconclusive as far as indentifying a focus of the seizures. The results showed slight differences in the right temporal lobe, but not a small enough area for consideration of resection. This was not a real surprise for me but definitely one for Steven. Dr. Katz still believes that these are focal seizures, but the seizures are likely focused in an area deep in his brain that is inaccessible. Joshua's options for treatment remain Vagal Nerve Stimulator (VNS) and callosotomy (sp?). Dicisions will not be made immediately.

For now, we are going to begin to add calories to Joshua's diet and monitor the seizures. At the point that he is back on a regular diet, we will consult with the doctor about exploring use of the other drugs Josh has yet to try and ditch some of the current drugs he is using. That will possibly happen inpatient. Dr. Katz will also consult with the team of epileptologists and the neurosurgeon about surgical options. Once there is team agreement, we will go forward.

Lots ahead of us which will happen pretty quickly over the next few weeks. We are simply going to enjoy Joshua's personality return. We hope that his seizures decrease enough for him to at least be more comfortable with less seizures and happy.

Joshua went back to Hippotherapy this week. He loved riding Dakota! He was VERY unhappy when his time was up and gave us BIG lip. When talking to him about it afterward, he smiled alot when we mentioned Dakota. This is new communication for him.

Joshua also got a much needed haircut this week. Let's just say that hair grows back. I think that it will look just right around Thanksgiving.

Steven is working his tail off at work right now. His long hours are easier at this point that we have lots of nursing. It might change next week, but for now, I'm enjoying what we've got.

Thanks for all of your support. It is really helpful. Thoughts, prayers, love, and simple hellos have helped get us through.

That's all for now. More to come later....Erica

Monday, October 22, 2001 at 01:47 PM (CDT)

Hey all. Joshua is starting to feel better. Thankfully, the poop has finally stopped, and Josh is getting a little bit stronger and a bit less miserable. He's getting more manipulative too. No way will be sit in his big boy chair if he doesn't want to. Lung capacity seems good with the screaming he can produce. Josh will even do a little therapy with us these days!

Seizures continue as they have been. We took Josh apple picking on Saturday and gave him medicine to prevent bad seizures while we were out...it worked! Josh seemed to enjoy himself, and we were thrilled we could be out as a family.

Steven and I had a date on Friday night. It was wonderful to be out as a couple doing as most other adults do. We went around the corner to our neighbor's Italian restaurant. They were thrilled to see us out. We had forgotten how nice it can be to be together in a less chaotic environment.

The results of Josh's PET scan should be coming this week. We are anxious to get them and will post a message once we hear from the Doctor's office.

We'll post more soon....Erica

Thursday, October 18, 2001 at 10:43 AM (CDT)

Hey all. Joshua's PET scan was largely uneventful. It was a whole day event. Joshua got to see a favorite EEG tech who spent the whole day with us. He did well with sedation. He need some help to keep his heart rate up while waking up, but he did well overall. We don't expect to hear results or treatment options until next week.

Seizures continue in the twenties everyday. Seizures are specially bad when we ride in the car. We're trying not to limit ourselves completely, but we do not want to stimualate too many seizures either.

Josh has been under the weather still with the diarrhea. I was up to my hips in poop and laudry on Monday. We're working on stopping that before it takes too much of a toll on him. He has lost more weight and is still lethargic. Hopefully this will get resolved soon. If Josh doesn't start looking better next week, we'll stop the diet then. The doctor would rather continue the diet to see its efficacy while Josh is feeling well. Restarting the diet is not a great option because it would again require a specific hospital stay just for that.

He's doing lots of cuddling and not so much playing. When I don't feel good, I would rather cuddle too. Nursing is helping so that I can get some things accomplished at home and some errands too.

Steven has been working late the last couple days and traveled to NC yesterday for the day. It's a good busy though and only temporary. Evening nursing helps me stay sane especially when he is not here. We look forward to having a date, actual time together without Joshua, out of our house. This will hopefully happen either Friday or next week. We need to use the nurses while we have them.

The little girl, Mallory, who had neurosurgery while we were at the hospital has had a series of articles written about her story in her local paper. The site is http://www.macontelegraph.com/content/macon/2001/10/07/home/mallory_1007.htm. It is an impressive story. She is doing well at home with no seizures at this point. We couldn't be happier for her and her family. They deserve good things now and always. We continue to wish them well. They encourage us tremendously and give us great strength to continue our journey to find health for Josh.

That's the latest news. We'll update more in the coming days.

Erica

Thursday, October 18, 2001 at 09:47 AM (CDT)

Thursday, October 11, 2001 at 07:30 PM (CDT)

We're getting ready for the PET scan on Tuesday. It should be a whole day affair. He has to be connected to the EEG electrodes and monitored for a couple hours before the actual test. After the test, I'm sure we have to wait a bit to be sure that the anesthesia wears off ok. Tuesday will be interesting. We pray that we get good information back from the PET.

Seizure count is a bit lower than in the past couple weeks. The last three days were 7, 12, and 14. Definite improvement. Could it be the diet? Let's see what happens.

Today, Josh had OT for the first time since before going into the hospital. OUCH. It was not his best showing. We know that he has lost alot of what he had going into the hospital but it hurt to see him struggle so much. In our heads, we know Josh will regain what he's lost; in our hearts, it hurts to have the fear that he may not do it too quickly or at all. We have to get him back into a full PT and OT schedule.

Aunt Debbie, Uncle Peter, and big cousin Simon leave on Saturday. SIGH....

We must have things to look forward to and things to hope for. A happier Josh...a healthier Josh...a laughing Josh...Josh without so many seizures...Visiting Aunt Debbie and family...Having a vacation/weekend away...Tomorrow.

Be well.

Erica

Tuesday, October 09, 2001 at 10:12 AM (CDT)

Hey all. Sorry it's been so long since the last update. Josh is sick. He's got an infection called C.Dif. (don't ask me to tell you what it stands for), but it makes him have very bad poops and quite lethargic. It's quite infectious to sick people or those with compromised immune systems. He's on antibiotics for it now and will hopefully be on the mend soon. He's lost lots of weight from the diet and from the infection, so he's pooped out both literally and figuratively.

Josh continues to have seizures, but the doctor is confident that they will slow down once the infection is cleared up. I told him not to make promises to me that he may not be able to keep. Still, I'm hopeful. A good thing is that the seizures have not increased with the illness. Josh will be scheduled for a PET scan next week as we get closer to making neurosurgery decisions.

Steven and I are "hanging in there" but we're exhausted and longing for our familiar Josh to return soon. He cries a lot and is generally unhappy. Though, when he is happy...he's really happy. Twelve hours of nursing a day is helping a lot in caring for him and still catching up from the mountains of stuff left to do from our prolonged hospital adventures. We are looking forward to him having therapy this week; it's been a while since he's had it. Hopefully he'll get stronger once we stop the ketogenic diet.

This weekend we went to Aunt Debbie, Uncle Peter, and big cousin Simon's house to see them and spend some time together before they move to OK. It was a good weekend, tough for Josh, but still good for us all to be together. Gram and Pop were there too, so it was extra special. Hint: avoid Boggle with Peter unless you want a butt kicking.

We also went to Grandma Ellen and Pop-pop Paul's for Great-Grandma Pearlie's birthday party. Seeing Aunt Wendy and Uncle Jeffrey was lots of fun along with the rest of the family. Josh especially liked seeing Scout the doggie. He said,"Hi Doggie!."

We're bummed to be missing Steven's cousins 40th birthday party and baby naming for his daughter this coming weekend in Boston. Our love will certainly be sent along with the rest of the family.

Anyway, thanks for all of your love and support. We'll keep updating a couple times a week about Joshua's status.

Tuesday, October 09, 2001 at 10:12 AM (CDT)

Tuesday, October 09, 2001 at 10:08 AM (CDT)

Tuesday, October 09, 2001 at 09:45 AM (CDT)

Friday, October 05, 2001 at 08:37 AM (CDT)

Good morning! We are still home!! Joshua has been slowly adjusting to the home routine. He has been sleeping alot. Right now he is still listless and has lost a lot of the ground we gained through therapies. Though he did do well at hippotherapy (horse) this week.

One of the things we have come to learn is that Joshua is medically fragile right now. Little things can send him back to the hospital, a small infection, etc. could put us right back.

I will tell you though that one of the great things about being home is being able to eat dinner together as a family. I did not realize how much I missed eating together until we started again over the weekend. What a joy to cook and clean in our OWN kitchen.

Finally the nursing we have is helping us get things in order. We have nursing coverage 9-9 Monday thru Friday. We are working to get used to the nurses and are training them on Joshua's needs. His previous nurse, Andrea worked 2 days this week with him and he was very excited.

That's the update for now. We all is well with everyone and thanks again for all of the words or support.

Saturday, September 29, 2001 at 08:20 PM (CDT)

It is sooooo nice to be home. Joshua was thrilled when we got home...lots of laughter, giggling, and talking! He konked out for the night and slept for 12 hours. He then took a 3 hour nap and would have slept longer if Steven didn't have to wake him to go somewhere. Josh is definitely pooped out and making up for lost time with the sleep. Seizures are back to 20-30 a day. He's lost ground with a lot of what he was able to do, so we have lots of work ahead of us. We're ready.

There were lots of tears of joy and relief flowing last night and this morning. Our home is warm again, even though it is cold in here as the temperature dips outside.

Thank you to everyone for all your kind words. It has meant more than you can know. We'll continue to let you know what's going on with Josh as he continues to heal, have tests and have procedures.

Much love,
Erica and Steven

Friday, September 28, 2001 at 04:08 PM (CDT)

WE'RE HOME!!!!!!!!

More details later.

Erica and Steven

Friday, September 28, 2001 at 04:08 PM (CDT)

WE'RE HOME!!!!!!!!

More details later.

Erica and Steven

Thursday, September 27, 2001 at 04:32 PM (CDT)

Hey all. We're writing this from our newest digs in the penthouse of the hospital. There were no more rooms on general pediatrics floor, so we are on the oncology unit. At least we know that Josh won't get sick up here.

Joshua is feeling much better. He needed less tylenol today. And, Josh has been talking and smiling. Lots to do and say. He looks pretty pale but that'll change once we get out of here into some sunshine. He's had about a dozen seizures at this point today. We'll see what happens on that front. (Josh had less seizures over the last couple days. Could be from anesthesia, morphine, diet, drugs,...?)

Our goal is busting out of this joint once he's comfortable and over the more severe pain. Our most fashionable, seersucker wearing, neurologist will make the final call. We'll hopefully have nursing in place and everthing else should already be arranged for discharge. If we don't get to go home tomorrow then it will likely be over the weekend or on Monday. Regardless, all I can say is "Lets go HOME!!"

We both got to go to Yom Kippur services. I went last night and Steven today. Misheberach is tough but needed. Next year we'll go as a family. We can't wait.

Good news: Our friends the Mosses are going home tomorrow, back to GA. Mallory looks great. As Jeff said, "It was great to hurt together." They were incredible supports during our stay at the "Hotel".

We'll let you all know what's next for us as we know it. Thanks for all your caring and love. We feel it.

More to come...Erica

Thursday, September 27, 2001 at 04:32 PM (CDT)

Wednesday, September 26, 2001 at 12:47 PM (CDT)

Joshua slept ok through the night. He is a little cranky with a very sore throat right now. Erica cuddled with him a little while ago and she said he smiled and enjoyed being held by Mommy...it made his pain go away.

We are preparing for the time when they will let us take him home. We are not sure when it will be but we feel we will be home in the next few days to sometime next week.

We are really looking forward to being home together as a family. Overall, we have our good days and bad days...however, nothing makes us happier than to see Joshua laugh or smile.

Tonight, Erica is going to Kol Nidre services and tomorrow I will attend services.

We cannot thank you all enough for your caring, support, and kind words.

More information later, Steven

Tuesday, September 25, 2001 at 03:03 PM (CDT)

I'm home the hospital for a couple hours break while Grandma Marilyn and Aunt Debbie look after Josh. They chased me out.

Josh is rather sedated with lots of pain meds. He hadn't had any seizures before I left; but, then again, he hasn't been awake much today. Josh's doing well breathing on his own without even having any oxygen. The doctors will be watching hime, to make sure he's comfortable and not bleeding, and Josh may return to the general peds. floor soon. The doctors will also be evaluating Josh daily to decide when he can go home. I'm working to set up daily nursing and get the supplies we need in place.

He is quite a kid! Last night, before he finally fell asleep, he looked at me with the biggest smile and said "Hi". We see that he is looking better and that makes us feel better.

An end to this hospitalization is in sight. Having not had a clear end in sight was brutal. Relief is on the way as we prepare to go home as a family. We'll jump the next hurdles as we get to them...we can see them in the distance.

Good news: Alex had his neurosurgery last Friday and is going home today...seizure free. He has also been at "the Hotel" for 41 days. Alex and his family are wonderful people who have been great supports and friends. We wish Alex a quick recovery with much strength and health. We will no doubt see them soon.

Thanks for everyone's support. Your words, love and prayers are priceless. Steven and I are getting through this largely knowing the support exists.

I'm supposed to be resting now. More later...Erica

Tuesday, September 25, 2001 at 03:03 PM (CDT)

Tuesday, September 25, 2001 at 10:16 AM (CDT)

Good morning! Joshua had successful T&A surgery last night. The whole procedure took about 1 hour. He was intubated for about 2 hours post-op and then they extubated him. Talk about a fighter, after surgery they gave some pretty heavy drugs for pain and he still tried to pull his tubes out!! He stayed awake until about 2:30 am and then fell asleep. When I left the hospital this morning he was sleeping.

Needless to say we are feeling relieved and Joshua's strength is keeping us going.

Aunt Debbie is coming to help out today and that should enable Erica and me to get some needed rest.

Thanks to everyone for your support and posts and we will update again soon!

Sunday, September 23, 2001 at 02:33 PM (CDT)

Hi...Joshua is sleeping, Erica is here next to me reading. It is a lazy Sunday at the hospital. We were given permission to take Joshua for a walk outside the hospital in his stroller. It was a lot of fun to take him outside for a breath of fresh air...he even got a little sunburned. :-)

We also had visitors from Pop pop, Aunt Wendy & Uncle Jeffrey, Aunt Bobbie & Cousin Rachel too.

The T&A surgery is scheduled for tomorrow afternoon at 6 PM and after that we will head to the PICU for recovery.

Joshua's seizure count remains about the same, around 30 a day. We pray that the surgery goes ok tomorrow so Josh can heal and then we can go home to plan out the neurosurgery process.

Also, last night Joshua's girlfriend, Ms. Collette, gave us a break and watched him so we could go have a night out to dinner together. Thank you for the much needed break.

Thanks for everyone for writing your messages and thoughts, it truly helps to get us through the days.

Saturday, September 22, 2001 at 01:09 PM (CDT)

Hey all. We're writing to you from the hospital today. That means we didn't go home yesterday. For a couple hours yesterday, we thought we had a chance to go home. We are still here because Joshua will be having surgery on Monday night to have his tonsils and adnoids removed. All the providers agree that it's in Josh's best interest. As he is right now, Josh has decreased oxygenation in his blood during sleep. We hope that the procedure will change that and also decrease his seizures.

While we're here we're also trying phenobarbital as a last ditch effort to improve his seizure status. The phenobarb. helped his sleep, but he is having the same amount of seizures as usual at this point. He continues with all his other meds and the keotgenic diet.

After Joshua's surgery, he'll be in the PICU intubated for a couple days and then pretty heavily sedated for a few days more than that. Our best guess is that we will be home sometime in the vicinity of next weekend or the beginning of that following week.

The next step for nuerosurgery consultation is a PET scan which we had hoped would be scheduled for Monday morning but will likely be scheduled for after the T&A. The reason being that Josh shouldn't have anesthesia twice in one day. It will be outpatient testing, so we would have had to be discharged for the test and then readmitted a couple hours later. Logistically, the present plan to wait on the test is for the best.

Joshua will almost definitely be having neurosurgery at some time in the future. The neurosurgeon was in on Thurs. night and last night and will chat with us more as we have more testing done.

Unfortunately, the options for treating the seizures are not the most exciting but are the best bets for helping Joshua get rid of some of the seizures. The surgical options include focal resection which is the best bet for getting rid of all seizures if a focus can be located of exactly where the seizures come from; a callusotomy (sp?) is the next best option for seizure control by cutting either partially or fully the corpus callosum which connects the two hemispheres of the brain; the Vagal Nerve Stimulator (VNS) is the other surgical option which is least invasive by implanting a device that interrupts the electrical activity in the brain, like a pacemaker - this procedure has a 66% chance of some control. The tests will tell us which procedure is right for Josh. This surgery will not happen for at least a couple months or so.

This is time of very difficult choices. We long for the easy decisions of what Josh should wear today and where we should go play rather than when he needs valium for seizures and what surgery or test to have first. That day will come.

Saturday, September 22, 2001 at 01:09 PM (CDT)

Hey all. We're writing to you from the hospital today. That means we didn't go home yesterday. For a couple hours yesterday, we thought we had a chance to go home. We are still here because Joshua will be having surgery on Monday night to have his tonsils and adnoids removed. All the providers agree that it's in Josh's best interest. As he is right now, Josh has decreased oxygenation in his blood during sleep. We hope that the procedure will change that and also decrease his seizures.

While we're here we're also trying phenobarbital as a last ditch effort to improve his seizure status. The phenobarb. helped his sleep, but he is having the same amount of seizures as usual at this point. He continues with all his other meds and the keotgenic diet.

After Joshua's surgery, he'll be in the PICU intubated for a couple days and then pretty heavily sedated for a few days more than that. Our best guess is that we will be home sometime in the vicinity of next weekend or the beginning of that following week.

The next step for nuerosurgery consultation is a PET scan which we had hoped would be scheduled for Monday morning but will likely be scheduled for after the T&A. The reason being that Josh shouldn't have anesthesia twice in one day. It will be outpatient testing, so we would have had to be discharged for the test and then readmitted a couple hours later. Logistically, the present plan to wait on the test is for the best.

Joshua will almost definitely be having neurosurgery at some time in the future. The neurosurgeon was in on Thurs. night and last night and will be chat with us more as we have more testing done.

Unfortunately, the options for treating the seizures are not the most exciting but are the best bets for helping Joshua get rid of some of the seizures. The surgical options include focal resection which is the best bet for getting rid of all seizures if a focus can be located of exactly where the seizures come from; a callusotomy (sp?) is the next best option for seizure control by cutting either partially or fully the corpus callosum which connects the two hemispheres of the brain; the Vagal Nerve Stimulator (VNS) is the other surgical option which is least invasive by implanting a device that interrupts the electrical activity in the brain, like a pacemaker - this procedure has a 66% chance of some control. The tests will tell us which procedure is right for Josh. This surgery will not happen for at least a couple months or so.

This is time of very difficult choices. We long for the easy decisions of what Josh should wear today and where we should go play rather than when he needs valium for seizures and what surgery or test to have first. That day will come.

Thursday, September 20, 2001 at 08:12 PM (CDT)

Hey everyone. It's Erica. I just got home from the "Hotel" and left Joshua in his new room that we just changed to. A private one, without any other whiny loud kids in it. Josh didn't have the best night in the triple we were in last night. A late admission and loud staff caused him to wake up and have a couple good seizures. It was also impossible for him to nap today. Not Josh's best day.

The latest news: Josh's seizures continue. He is tolerating the diet well. Everyone has an interest in getting us home as a family, so we talked to discharge planning today. One agency may have a nurse for us, depending on our needs at home. There's a possiblity Josh will need daily care; then again, he may need round the clock care. We also need lots of equipment. The ENT was in for a visit. He said Joshua's tonsils are actually small; though, he's not sure about the adnoids. The pulmonologist and neurologist would like to get rid of all variables that could impact seizures, so they recommend a T&A ASAP and we both agree. Yank 'em. I think the soonest it can be done is Tuesday? The only glitch is his high risk for bleeding secondary to his frequent seizure activity, so Josh will need to be in the PICU for about a week with lots of sedation to prevent seizures.

On the neuro. front: Joshua will need a PET scan in the next couple days to further determine if he is a candidate for surgery. That may have to be done outpatient at another facility that can do different diagnostics than the scanner at the hospital. In the meantime, we may try IV phenobarbital.

Our thoughts: If we can all get home for even a couple days in between now and the T&A surgery, it may do us all a world of good. We'll see. I need to see our neurologist again tomorrow to discuss it further. If we don't get home, it looks like we'll staying at the hospital another week and a half or so.

Good news: Mallory has been discharged today!! We wish their family lots of good health and happiness. They have been an incredible support to us and have become very good friends. Another person we met is also having surgery tomorrow. We have been praying for Alex and his family. They too have become very special people in our lives. Our three families paths have crossed for a reason....

Steven and I, and our families too, our anxious about what the future holds. We have been thinking long and hard about what's best for Josh and what are his best options for a full quality of life. We push forward together one day at a time with our love for Joshua guiding us. Tears can definitely be a part of this time in our lives, but we are confident that our decisions are made in a rational frame of mind with some of the best providers available to help us.

Please keep letting us know that your support is with us. It truly makes a difference.

Wednesday, September 19, 2001 at 07:36 PM (CDT)

We moved Joshua from the PICU back to the regular pediatrics floor today. Tomorrow we have a visit from the Ear, Nose, and Throat doctors about Joshua's tonsils and adnoids. Also our team of neurologists will be meeting tomorrow morning and we will discuss next steps with them. The ketogenic diet is agreeing with Joshua so far. However seizure improvement has been minimal. Aunt Debbie came by today and gave us a little break so Erica could go to services and I could shower and take a walk.

Overall we are ok, just tired of being in the hosital for 35 days or so, it is a mental and physical drain on everyone.

Also, our friends from Georgia, Mallory Moss who had neurosurgery to control her seizures, will be sent sent home tomorrow. We are all very excited for them.

Wednesday, September 19, 2001 at 10:27 AM (CDT)

Joshua slept well last night. They removed the EEG leads from his head and today they will be moving us out of the PICU to the regular pediatric floor. He is a little tired in the morning and seesm to be perking up in the afternoon. Today Erica is at services while I am at the hospital. Right now Joshua is with Aunt Debbie. We had a lot of visitors yesterday and REALLY appreciated the support. Lisa, Gary, & Mitchell Friedman came by, Michelle Boulet (occupational therapist), Aunt Wendy & Uncle Jeffrey, and Grandma Marilyn, Aunt Debbie & Uncle Peter brought us a wonderful holiday meal that included the famous chocolate chip cookies. Hopefully after meeting with our doctors today and tomorrow we can get an idea of when we will get out of here.

Tuesday, September 18, 2001 at 04:20 PM (CDT)

Hey all. Happy New Year. Steven, Josh, and I are sharing Rosh Hashanah together in the hospital as he had the second of the SPECT scans today. That did not go the most smoothly as far as logistics and communications with all the parties involved, but Josh did a great job. He has been in a better mood today and yesterday afternoon. He has tolerated the full diet yesterday and partial today thanks to resuming an Rx for motility. Seizures continue with great frequency and strength. We tried CPAP for Joshua last night to see if it would impact the frequency of seizures, but Josh couldn't tolerate being on his back and being attached to a machine. They're trying to find another way to fit him for it for another trial. We gave up on it last night at about 11p; he slept til 10a.

We're still in the PICU, hopefully for our last night, and should be going back to general pediatrics tomorrow. Josh has been disconnected from the EEG as I am writing this. I can't wait to wash his hair.

We've had visitors today and it's been helpful since we'd prefer to be home observing the holiday with family. I went to temple last night...it was hard not having my guys with me, but I'm glad I went. Steven's parents stayed with him last night before I got back from temple. It was very helpful for him.

The plan: try one more drug then go home, hopefully. We can talk surgery options from home.

Every single note from you all has been unbelievably supportive. We can't even believe that over 550 people have visited this site. It is truly amazing.....Thank you.

More updates to come.

Sunday, September 16, 2001 at 07:31 PM (CDT)

I am just getting home from the hospital and left Steven trying to comfort Joshua. He's been rather irritable, listless, and unhappy today. He's had lots of seizures and trouble tolerating the new diet for the last two days. He still hasn't been up to full feeds yet. We'll be starting a drug for motility this evening to hopefully move things along. He slept last night! There were a few glitches with his feeds and someone made him a bit too warm. It only added to my guilt for sleeping on a lounger in the parent lounge instead of in a chair next to Josh. He actually slept most of the morning and had a good afternoon nap. Maybe he's getting used to the diet, playing catch-up on sleep, or toxic on his anti-convulsants. Breathing issues seemed to have resolved for now. I hope to see the ENT tomorrow or Tuesday; last I heard, they were in Cleveland. We'll probably go up to the general pediatric floor tomorrow and be disconected from the EEG again while we get the diet straightened out. That will meant that he will probably have a roommate which increases risk for getting sick.

I'm exhausted from everything that keeps popping up and looking for the energy to deal with it all. We'll get through each day with hopes for each tomorrow being a better day.

I can probably speak for Steven when I say that we have never experienced heartache like we are now. It goes way beyond emotions and is a physical experience.

We see good things around us, though. Mallory Moss was moved up to general pediatrics after walking in and giving Joshua a hug and kiss and is doing well. It helps in our quest for hope.

We looking forward to being home as a family. Thinking about the plans we need to make to get home...nursing, equipment, appointments, etc. Hope is a good thing to have, even if it has to be the little things.

One of the best parts of the day was seeing my sister Debbie and nephew Simon. Josh loved seeing them both. Steven and I loved it even more. Simon's doing a lot for my parents too. Debbie will be in again tomorrow.

Steven and I are trying to figure out the holiday schedule for getting to temple a bit. Not the same as being together. Next year...

Thanks for all the continued support.

L'Shana Tova.

Saturday, September 15, 2001 at 08:46 PM (CDT)

An update for today...Aunt Wendy and Uncle Jeffrey visited today along with his Grandma Ellen and Pop-pop Paul. Sunday we are expecting some additional visitors of friends and family.

Last night we did not need the CPAP which was a good thing. Joshua had a little more energy today and his seizures are decreasing.

If you read the post from Jeff Moss, I must say they are one of the best families I have ever met and feel that they we were meant to meet them, somehow it feels all interconnected, and they truly are incredible parents. They drove around the country looking for the best team of doctors to help their daugher...Mallory, for some reason this is where they ended up. They truly are the one of the best families you could meet.

As Erica said, WE will get through this, it is just one more bump in the road as Joshua develops. I love my wife more than anything and could not imagine going through this with anyone else...she amazes me with her resolve, smile, and love everyday.

Saturday, September 15, 2001 at 03:42 PM (CDT)

Hey all. It's Erica again. I'm writing from the PICU. Steven stayed here last night and he did not sleep all that well. Joshua had a rough time falling asleep, so we had to give him some sedation just to push him over the edge to sleep. Joshua's been rather sluggish today and only perked up after about 1pm. He's had about a dozen or so seizures today.

The doctor's have been in already and the news is that last night he didn't need the CPAP. His oxygen saturations have been borderline needing oxygen. He'll continue to need monitoring and may still need the CPAP support. The reasons Joshua's breathing probably deteriorated was that he had rebounding from having his Dimetapp discontinued after being on it since last November. Hopefully he'll get a bit better until we see the ENTs and he won't need CPAP. From the neuro standpoint, the ketogenic diet is helping and we are seeing more than a 50% decrease in seizure activity. As long as this continues, we might be able to get out of here by the end of the week. We're hopeful.

Our new friends here at the hospital have been unbelievably supportive. We laugh a lot and cry alot together. I truly believe that we were put in this hospital at this time for a reason. Meeting these poeple and seeing their children go through the process of having surgery has helped prepare us for what might be ahead of us. Mallory was on the diet for more than two years very successfully and her parents have connected us with lots of people here in the hospital and back at their hospital in GA. (They've come here to Hackensack from Macon, GA for treatment and surgery.)

I'll be staying "The Hotel" tonight. Looking forward to seeing my sister, Debbie, tomorrow. I miss seeing you all and will especially miss seeing many of you for holidays.

I've given Joshua lots of hugs and kisses from you all and he's given me lots of smiles to send back to you. By the way, he's perfected saying Mommy, Gram, and Ellen since we've been here.

Thanks for your support. Be well.

Friday, September 14, 2001 at 07:56 PM (CDT)

Hey all. It's Erica. I just got home for my turn to sleep at home after a very very long week at what we sometimes call the Hotel Hackensack. I left Joshua and Steven snuggling in the new digs in the PICU. Trying to get used to their routines and where everything is. Unfortunately, parents are not allowed to sleep in the rooms with children, so we're not to happy about that. I'm sure we'll get used to it for the short term and find a way to give up some control. It's not easy, though. We're used to doing everything for Josh. I know every sound he makes...every need he might have.

A bit more history. Josh has tried lots of different meds. and is nearing the end of the list of meds. still available to him. At his worst, he has over fifty or sixty seizures a day. His best while inpatient is just shy of a dozen a day. Right now, he is somewhere around twenty. Not a bad day. However, the seizures he had were strong and a couple required oxygen.

I have hope for the ketogenic diet to give us some control, enough to go home and have a break at least. In the meantime though, we are beginning testing in consideration of surgery as a way to treat the epilepsy. He had a SPECT scan this week to try to help pinpoint where the seizures are coming from. We'll see what's next. Right now, we just get Josh adjusted to the diet.

Just to throw a wrench in the whole thing: Joshua has been diagnosed with obstructive sleep apnea and the pulmonologist has referred Josh to the ENT for a tonsilectomy and adnoidectomy (aka T&A). However, the ENTs were stuck in Denver at conference and are currently on a road trip with all the other ENTs from all over the country driving east in search of home. I expect to see them next week soemtime. In the meantime, we have to try CPAP to see if it will relieve some of Josh's sleep issues and secondarily help decrease some of his seizures.

Lots going on...all seemingly interrelated in some way...tough decisions...no clear answers.

I thank God every day for the new morning, for my beautiful child, and my unbelievable friend and husband. I am truly blessed and realize that indeed things could be worse. We will get through this. I look forward to the new year. Thanks for everyone's support, prayers, and love. It is going a long way during these very trying times.

Friday, September 14, 2001 at 04:53 PM (CDT)

A brief update, Joshua is having some breathing issues associated with sleep. They have moved him to Pediatric ICU. He will be hooked up to CPAP to help him breathe and night. Right now his seizures have decreased with the new diet so that is a good thing. Thanks to everyone for your kind words.

Thursday, September 13, 2001 at 07:09 PM (CDT)

First entry...a brief synopsis, those of you who know Joshua see his smile and happy face, we see it too. Even though we are working hard to control his seizures. That is why we entered the hospital on August 15th. So far we have tried numerous medications...some worked for a short time...most did not. We are now trying a special diet called the ketogenic diet and a new medication with the hope of getting Joshua's seizures under control so we can go home. We are also looking into neurosurgery as a way to control the seizures.

In our month at the hospital we have become close with 2 families, one had successful surgery today and the other who is waiting to have surgery.

We hope you visit this page often as we will try to post updates and info as much as possible.

Click here to go back to the main page.

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