September 2006

I can hardly believe it has been a year since we last updated Jenna’s website. First and foremost, let me apologize for not updating sooner. So much has happened in the past year, some setbacks and some leaps & bounds. I think you are going to be very excited after you have finished reading the update and seeing the new pictures.

In September 2005, we came home from the Children’s Hospital of Philadelphia after spending approximately 2 ½ months there in the Seashore House for the Response Recovery Program. She started eating pureed food by the infant spoonfuls. She became more alert and consistent with her eye blinks for “yes/no” communication. She was still screaming and crying out a lot so we looked into Jenna seeing a Sensory Integration Therapist for sensory issues.

As of October 2005, Jenna began to develop some issues with her digestive system and she ended up back in the Janet Weis Children’s Hospital in Danville, Pa once again. They brought in the General Surgeon to see if Jenna had any abdominal obstructions or blockages that could be causing her digestive system to slow down. At this point in time no abdominal obstructions or blockages were found. The doctors gave her belly a rest by giving her IV nutrition for a few days and she was on her way.

Jenna also got to start the Hyperbaric Oxygen Treatments and she did very well. This type of treatment helps with the blood flow to the brain along with waking up the undamaged brain cells that are lying dormant around the damaged areas of the brain. This type of therapy allows Jenna to breathe in 100% oxygen for an hour at a time. So far we have noticed that it has definitely helped with her spasticity, her alertness and motor control.

November, 2005 came and the screaming continued and seemed to be getting worse so we took her back to duPont in Delaware so the neurosurgeon that placed her shunt and baclofen pump could examine both areas to be sure that she wasn’t getting any pain or discomfort from the shunt or the pump and also to see if they were working properly. Thank God they were working and he didn’t seem to believe that they were causing her discomfort. However, he got a second opinion from the rehab doctor that Jenna saw at duPont and she suggested we take Jenna to her GI doctor to rule out acid reflux.

Now this brings us into December, 2005 and off we went back to the Janet Weis Children’s Hospital in Danville, Pa. where her GI doctor placed a nasal gastric probe through her nose and down to her belly. This tube was connected to a monitor that showed Jenna was having acid reflux 27% of the time. The GI doctor recommended seeing the surgeon to set up a surgical date for a procedure called a nissen-fundoplication which is bringing the stomach up around the esophagus to stop the acid reflux. The surgery was scheduled for December 17, 2005 and we were home just in time for Christmas; Christmas Eve to be exact.

Well, now this brings up to the 2006 New Year (which is almost over!!!) and what a year it has been. Let’s begin with January 2006, Jenna was continuing to heal from her abdominal surgery and getting back into therapies when once again she developed issues with her digestive system. Yes, you guessed it, we ended up back at the Janet Weis Children’s Hospital in Danville, Pa for yet another possible abdominal obstruction or blockage. (What next!!!) The doctors and surgeons there continued to run tests and still found no blockage or obstruction. They were baffled and so were we. Once again, they placed her on IV nutrition to give her belly a rest and after 10 days we were on our way home again.

So begins February 2006. This month started off with an appointment with the orthopedic doctor at the Children’s Hospital of Philadelphia for a consult. Jenna needed to be seen for the curvature of her spine (she has now developed scoliosis) and also for possible surgery on her arms to stretch out her ligaments since the spasticity contracted her arms so much. During the visit the doctor sent Jenna for full x-rays of her spine. While she was sitting on the table for the x-ray, her incision from the surgery in December had opened up and was leaking fluid.

Needless to say that prompted a visit to the Emergency Department, which you guessed it, admitted to the PICU in Philadelphia. After numerous tests and examinations the doctors found that Jenna had an infection in her shunt catheter that was placed in her belly. Immediately, neurosurgeons came and had to externalize the shunt catheter so the infection didn’t make its way up to her cerebral spinal fluid in her brain. Further testing showed that the infection was in fact in the shunt catheter and not in her abdomen where the problem had started. They explained to us that the shunt had to come out since it was infected and chances are if the shunt was infected then there was a good chance the baclofen pump catheter was infected as well since it was also in the cerebral spinal fluid. They scheduled her for surgery to have the shunt and the baclofen pump removed. After both of these objects were removed, they continued to run tests on her cerebral spinal fluid until it showed no signs of infection anymore. Then the neurosurgeons went in and replaced the shunt. The good thing is the baclofen pump didn’t have to get replaced. She didn’t need to have it at all (YEAH!!!!). She is now on oral baclofen and doing very well.

I would like to tell you that is all the surprises we had in February, but I would be lying. While she was in the PICU at the Children’s Hospital of Philadelphia she once again developed issues with her digestive system. By now we are wondering when is this nightmare is gonna end. They ordered a CAT Scan of her abdomen and this time found a blockage. So now we are on our way to the operating room for a bowel obstruction. They weren’t sure how long the surgery was gonna take or what they were gonna find, but all in all it went well. The general surgeon found the blockage right away and was able to remove it. Jenna was out of the operating room in no time at all. Thank God for everyone (and I do mean everyone) that was involved with her care at the Children’s Hospital of Philadelphia. They are truly miracle workers who love the children they care for. Thank you so much CHOP for not giving up on my little girl.

March 1, 2006, we are finally home and loving it. Jenna healed nicely and got back into therapies slowly. By April 2006, we switched out patient facilities for therapy. Jenna is now going to the Good Shepard Rehabilitation facility in Allentown three days a week for physical therapy, occupational therapy, speech therapy, feeding therapy, assistive device therapy and pool therapy. She is doing wonderful! It is truly amazing to see how far she has come since April 2006 through September 2006 and she still going strong.

Her PT’s at Good Shepard are working with her sitting, standing and the initiative to taking steps. They have figured out that Jenna does things in her own time and when she wants to cooperate. When given some incentive (stickers, movies, toys, prizes, etc.) she seems to be more motivated. She is sitting better by herself for longer periods of time. She is definitely getting stronger in standing without someone holding her legs. Last but not least, she is definitely taking steps on her own. You go girl!!!!

Her OT’s at Good Shepard are working with her holding herself up using her arms while lying on her belly (she has become a pro at this), reaching for things and using her hands to hold crayons and markers. They will play games with her encouraging her to reach out to push a button or paint a picture. Jenna is really showing leaps and bounds here since in the beginning she wasn’t showing much purposeful movement at all. Now, she is not only showing the initiative, but really trying to do more things on her own with her hands. Also, I would like to mention that her arms have straightened out so much that she will not need surgery at all. They are in a functional position for her to use them.

Jenna has her good days and bad days with the Speech Therapist and Assistive Device Therapist at Good Shepard. Some days she really does well with using her hands to either push a button to make a choice or using her hands to reach out to a picture to answer a question. Then some days she just sits and laughs when they ask her to do something with a devilish look in her eye and a smirk on her face. That’s our Jenna.

However, Jenna seems to think that the Pool Therapy is for sleepy time. In Feeding Therapy, she is doing really well eating pureed food. She is definitely eating more by mouth. She is starting to chew with her oral exercises. It really is nice to have her at the dinner table for a change. However, she hates the Feeding Evals at therapy. She doesn’t like to eat in front of others, but who does. She’ll get use to it sooner or later. The good folks at Good Shepard are doing a remarkable job with Jenna. We are thankful to have them as part of her recovery. Thank you guys!!!

Well, her day doesn’t end there. Jenna also receives school therapies (three times a week) such as physical therapy, occupational therapy, speech therapy, vision therapy and education therapy. That’s a mouthful. She is taking the initiative to use her legs more in therapy by standing, pushing and pulling her legs on command and kicking. Boy does she like to kick. She especially loves to kick the Speech Therapist (ha, ha). She does really well for her Speech Therapist by making sounds and trying to say words on occasion. Jenna is definitely vocalizing more with her voice by making sounds. She is definitely laughing and smiling so much more these days. It is nice to hear her use her voice. Jenna is loving the arts and craft projects she gets to do with the Occupational Therapist, especially the sponge painting. Her teacher feels that she is doing really well with school. She tells me that Jenna loves Science and Social Studies and she really captures her undivided attention with those two subjects. The school therapists/teachers have done an exceptional job in her recovery as well. A very special thank you goes out to them as well. You guys are great and very dedicated to our Jenna and we love you for that.

Her weekends are also filled with therapy. Jenna started horseback riding (equestrian therapy) in May 2006. Brandon is right there alongside of her with his riding lessons as well. Of course, Mackenzie gets her turn to ride too. She wouldn’t have it any other way. Jenna is doing really well with that also. The instructor/therapist said Jenna has gotten so much stronger since her therapy began in May. She said that Jenna will be riding by herself before you know it. Since Jenna began horseback riding until now, she pulls the reigns by herself to make the horse stop and she is beginning to use her legs while on the horse. Jenna’s sitting is definitely getting stronger with the horse therapy. We found a great place in Factoryville called the Pocono Equestrian Center that works with special needs children. I have to say they take these kids under their wings and love them like they are their own. They have done an outstanding job with Jenna. Thank you.

Jenna is now seeing a Chiropractor for the scoliosis issue. We are hoping that over a period of time with the spinal manipulation and trunk strengthening in therapies that she can avoid the need to have corrective surgery on her spine. Please keep her in your prayers for this as well as for her full recovery.

As of August 2006, we were hospital free for five months until Jenna had a seizure and was transported down to the Children’s Hospital of Philadelphia by way of helicopter. After spending a night in the hospital for observation the neurologists found that the seizure was unprovoked (they don’t know what caused it) and there was no change in her CAT Scans. No further damage to the brain was noted. Thank God. We came home the next day and she has really been doing much better in therapy. We are hoping that the possibility of the seizure was from her brain trying to remap and make new pathways in her recovery process.

Well, that brings us to September 2006, where Jenna will be going back for Hyperbaric Oxygen Treatment for another 40 sessions. We are all excited and anxious to see how much further these oxygen treatments will play into her recovery. We travel to East Stroudsburg for these treatments and we can’t wait to see the wonderful folks at the Jenny Rose Center.

I would like to take this time to thank Grotto Pizza, Harvey’s Lake, Dino’s Supreme Cleaning and the Disler family for decorating a Christmas tree “In Memory of Adam Disler” and donating the money raised to our Jenna for her recovery. You are truly special people. I have to tell you we absolutely loved the ladybugs. The ladybugs have such a special message in our family pertaining to Jenna and now they hold an even more special meaning to us. Everytime I see a ladybug now, I not only know that Jenna’s guardian angels are near, but I also think of the story you shared with me and please know that your family holds a special place in our hearts. God Bless.

I also have to extend our gratitude to the Cook family, Elias family and the Decker family. Each one of these families have suffered a great loss of their own within the past year. Our condolences and prayers are always with them in their time of sorrow. These families raised donations in their loved ones’ memory for our Jenna’s recovery. Words cannot express our gratitude and appreciation for such generosity, support and love they have shown to our family. God Bless each and every one of them.

Our family would also like to thank Monsignor Rauscher, St. Nicholas Church, for performing a Healing Mass last November 2005 for Jenna. We can’t begin to tell you how much support Monsignor Rauscher, along with Father Larry, Sister Mary Catherine and Sister Bernadette have been to our family from the very beginning until now. St. Nicholas Church and St. Nicholas/St. Mary’s School have truly been a substantial amount of strength for us. Thank you all so very much. I would like to think that every family in such a dire need have people like you in their life to be by their side, but unfortunately I don’t think some people do. We truly feel blessed to have you all with us.

This past June 2006, the Golf Committee got together and pulled off yet another successful year of fundraising. You guys are such a blessing to our family. Your dedication and love is overwhelming and I can’t let this update go and not mention the hard work that you all put into such a great success. A huge thank you goes out to all the sponsors, those who made donations, the golfers, those who volunteered that day to help out with the tournament and also those who came out to enjoy the day with us. Jenna was able to go to the tournament this year and she really enjoyed seeing everyone. A special thank you goes out to TJ and Heather Cook, Sandy and Paul Kish, Joe and Pam Masi, Billy and Jimmy Elias, Anne West, Jean Scorey, Caruso family and Victor and Muriel Decker. I hope I didn’t forget anyone.

Thank you to the nursing staff for your continued dedication, patience and love that you have given to Jenna and our family. God knows you need wings now because you are definitely angels on earth. We love you guys.

I am apologizing now if I have failed to thank anyone or mention anyone in specific for their generosity or support. It is all appreciated and certainly is not forgotten. It is very hard to sit down and remember everything that has happened in the past year in a matter of about 6 hours. So please don’t think for a moment your support has gone unnoticed. We love you all.

TODAY, Saturday September 23, 2006 while at equestrian therapy, Bev (the trainer for the horses) was telling Jenna that she will be riding the horse by herself in no time, well – let me tell you, Jenna surprised us all today! While getting Jenna on Phoebe, the therapy horse, Jenna had great posture. Bev was quite impressed. Bev then put a vest on Jenna to help support her torso, the vest went on & Jenna was ready to rock! She looked like John Wayne for crying out loud! That’s right – she was riding ALONE without a backrider for the first time!! (You go girl!). She got to ride Phoebe & Storm for a total of 25 minutes all by herself!! Now, Bev would not put Jenna in any danger, so we had volunteers on each side of her, one at the reigns, & a person in front of the horse keeping Jenna’s attention focused forward. It was amazing!! Pretty emotional for all, especially Bev.

Please continue to pray for Jenna’s full recovery and for our family’s strength to get through this. God Bless you and your family.