THE PAST AND FUTURE

 When I was a little girl I always brought home injured birds, motherless squirrels, and numerous lost animals. I even caught a german speaking parakeet one summer in our backyard. My parents always let me make a little home for them out of rags or grass, and care for them, even though they knew that most of them wouldn't make it through the night. I owe alot of who I am today to my parents because they allowed me to be what I was meant to be, and that is a nurturer. People always tell me that what I am doing is such an unselfish thing but I beg to differ. Jasmine has changed me and so many people around me. I understand more of what a special needs person is, and how they are really not much different from you or me. Jasmine is a normal seven and a half year old little girl, who loves to be outside and loves to swim. She likes to ride a bike, a horse, ice skate, and sleigh ride. Jasmine loves to go for walks, and of course to go to the mall. Justin Beiber is her favorite singer, and she loves to dance and sing. She can shake her head NO when she doesn't want to do something, and she can let you know when she is saying YES! Jasmine has a Mom Mom and Pop Pop who adore her, and a Grandma that feels the same. She has thirty one cousins who all treat her like she is no different from them. She has LOTS of aunts and uncles, her nurse Miss Lee who she LOVES, and teachers and staff at school who take good care of her when she is there. Her smile could even make Mona Lisa crack a smile, and is as silly and crazy as her mother. I know she will continue to surprise and amaze us everyday with new words and more mobility. I am planning on updating her progress maybe monthly, or if something really fantastic happens, I will write sooner. I know that one day I will be blogging that Jasmine ate her first piece of pizza, and took a step all by herself. The sky is the limit with her, and if anyone can do it, she can. In Jasmine's first IEP meeting (individual education plan) her goals were simple tasks like gazing at an object for thirty seconds. Now some of her goals are to identify shapes, body parts, and to identify colors.This doesn't seem like anything spectacular, but believe me this is a major milestone. We all take for granted so many things that come natural to most of us, but for Jasmine it is a celebration every time she masters something new.  I had the privilege of raising four of my own very unique children, with lots of bumps along the way, and I am sure that it will be no different with Jasmine.  She definitely has a mind of her own and can be just as stubborn as any seven year old. I am looking forward to the future and what it holds for Jasmine and all of us.

I LOVE MY TUBELESS TUMMY!

The next six weeks were a real test for me and Jasmine. She came down with a cold and fever so I had to try and give her medicine by mouth, plus her food and drink. She was not at all interested in any of it, so it was a struggle to get her to take her medicine. All her liquids are thickened so it's easier to swallow, so I thickened her medicine mixed with some juice and spoon fed it to her. It took a while but she ate it. Jack told me I should just give her the medicine in her feeding tube, (he felt bad for her because she was sick), but I said if I did that then it meant that she still needed it.  Jasmine got through her cold with flying colors. She didn't eat much for four or five days but when she felt better she began eating and drinking more. That made me feel so much better knowing that I didn't use her feeding tube during her illness. I then had a meeting with her nutritionist through her school, along with her speech therapist and teacher. We had kept a list of what she ate for four days and she looked at that to get an idea of how much she was eating. She was pleasantly surprised , and assured me that she was getting enough nutrition and really didn't need her feeding tube. I left her school feeling so optimistic about Jasmine's future. I decided not to wait for March to go back to her gastroenterologist, and called him as soon as I got home. We made the date the Friday before Valentine's day, right after her dentist appointment. Jasmine was really growing up. She halfway allowed the dentist into her mouth to clean and examine them without carrying on like she usually does, and didn't cry on the elevator ride up to the doctors office. (She has always been very afraid on an elevator.) I even switched pediatricians once because they were on the second floor and I couldn't carry her up the steps. Her tube removal was very uneventful. He walked in, said "Oh, now you're ready?", pulled it out and covered it with some gauze and a band aid. He warned me that there was an outside chance that it wouldn't close, but we would know pretty quickly if it was going to close or not. He said if it didn't close her food would come right out of the hole in her stomach. I was not looking forward to that happening. Luckily, we didn't have to worry about that because it started closing very quickly. Three days later Jasmine went to school on Valentine's Day with a heart sign Jill made for her which hung on the back of her chair that said I love my tubeless tummy!  Her stomach is healing very nicely, but she will have yet another scar to show all that she has been through. It is so nice to be able to pick her up without worrying about pulling her g-tube out, (I only did it once) and I can't wait to go buy her a two piece bathing suit!

SEVEN YEARS OLD

Jasmine turned seven on June 8th, 2010. She had really come a long way from the first time that we had met her. Every day she was doing something that she hadn't done the day before. With Jasmine, it was always slow but steady progress. The doctors told me from the beginning that she would be a pleasant child, but would not be able to accomplish much. I am so glad that she proved them wrong. I am amazed at her determination to do things, and her love for life and all the people around her. By the time Jasmine started second grade, her room was finished and she was officially a little princess. Her room was painted a lilac color with white and lilac flowered curtains to match. She had her state of the art bed which could do everything but move across the room by itself, a therapy swing with a therapy mat, a bumpy bed to lounge on that I made out of big chunks of foam, a huge flat screen television on her wall, and enough room to play soccer in her kid walk! Every week she was surprising us by eating more and more and drinking all of her drink. I was determined to have her feeding tube removed, but there were just times when she wasn't interested in eating or drinking. It was becoming more and more frustrating, because I thought that maybe she would always need it, and maybe wasn't capable of eating on her own. We took a visit to her gastroenterologist and I told him my concerns. He suggested just feeding her for the next four or five weeks by mouth and seeing how she did. If she lost a significant amount of weight, then we would know that she wasn't ready. It was a very scary concept, to not use her feeding tube when that was the way I had been making sure she got what she needed, but I was willing to give it a try. The next few weeks went by pretty well. There were times in the morning that Jasmine wasn't very interested in breakfast, so I just gave her what she would take. She almost always did well in school, so I never worried about that. The hardest part was trying to get her to get enough liquids in her for the day so she would stay hydrated.  I counted every calorie and made myself a nervous wreck, trying to make sure she met her quota every day. We didn't use the feeding tube from a couple of days before Thanksgiving until her next visit in January. They weighed her and she had actually gained a half a pound! The doctor surprised me by telling me we could take her tube out right then! I surprised him right back and told him I thought it was too soon. I wanted to make sure that when she was sick, she was still able to get her medicine and liquids without the help of her feeding tube. So, we left with her tube still in tact, and made an appointment for the middle of March to see if she was still maintaining her weight. After all Jasmine had been through, I wanted to be sure that this was the right thing to do. I realized that I really had learned to have patience!

THE DIVISION OF YOUTH AND FAMILY SERVICES (DYFS)

 

While Jasmine was enjoying her new life as a Muldowney, our house was becoming smaller and smaller with all her equipment that we were accumulating. When we adopted Jasmine DYFS told us that if we needed help with things for Jasmine as she got older that the state would help us as much as they could. I know that DYFS only gets bad publicity, so I would like to say that they have some really great people working there, and that they really do have such a heavy case load that I can imagine how things can get mixed up sometimes.Not to say that there are some who don't do their job, but that is true in any profession. I took DYFS up on their offer and told them that it was getting harder for us to get Jasmine in and out of the car. Lifting her from her chair to her car seat, and back out again into her chair, and collapsing her chair and lifting it into the back of my car, was very exhausting. I asked them if they could help me in any way get a handicapped accessible van. After estimates from a few dealers and alot of paperwork, they offered to pay for the conversion part of the van, which is around twenty thousand dollars. I had to trade in my car, and then submitted the paperwork to The Children's Catastrophic Fund, and they also chipped in to help defer the cost after we purchased the van. This van has saved my life (not to mention my back) They also paid to have a ramp put on the front of our house. Then I requested to get help with renovating one of our five bedrooms into a handicapped bathroom. Again, we had to submit three estimates and they offered to pay to have the room changed into a bathroom! I lost a bedroom, but I didn't care. I was then able to put Jasmine on a shower stretcher and just roll her right into the shower. The room is big, so I have plenty of room to move her around in her chair. That was my second request that was answered from the State of New Jersey. I felt a little guilty that I was so lucky to have all of this for Jasmine, but I was reassured by many that I was saving the state a whole lot more than that, because if she was in a hospital it would cost the state that much in one month.I was still very appreciative and was so happy that they made my life easier. Our house is a ranch, and unfortunately my bedroom was on one side of the house, and Jasmine's was on the opposite side. Jack installed a camera in her room pointing directly at her bed, and had monitors placed throughout the house. We had one in the dining room, one right next to the television in the living room, and one right next to my bed. I had it magnified so I could see her face up close and personal, like she was right next to me. I could hear her breathing, and when she started choking on her saliva which she did quite frequently, I would jump out of bed and run through the house to get to her room. Unfortunately, this happened throughout the night so I never really was able to fall into a deep sleep. It was getting to the point that I either slept in her room in a chair, or would put her in bed with us so I didn't have to sprint to her room in the middle of the night. This went on for quite some time. I decided I was going to call my "friend" at DYFS, an adoption subsidy worker who had done so much to help us in the past, and ask her if she thought that they could help us with an addition so we could put Jasmine's room right next to ours. I felt funny asking, but it was all for Jasmine, and she was going to need more room for home therapy and to walk in her kid walk, and have a safe place to live for many years. I have to mention that I have a hard time asking to borrow even a dollar from someone for myself, but when it came to Jasmine, I became a different person. I was her advocate, and I knew she deserved to have the best of everything. I had no problem asking. Jack thought I was crazy, (not the first time) but I figured there was no harm in trying. I called her subsidy worker and told her my idea. She told me to put it in writing, explaining what Jasmine needed and why, and gave me a name and an address to send it to. I typed my letter, sent it certified mail, and waited for a reply. Like many times before, I had a positive outlook on everything pertaining to Jasmine, because I knew that God was looking out for her. Maybe a month or so later, I received the phone call I had been waiting for. Jasmine's subsidy worker told me that it had been approved, and I should send in three estimates for an addition for Jasmine's new room!  I knew where I wanted the room,(there was really only one place that would be feasible) so we had the estimates drawn up. The addition was 21 by 30, and would have a door leading from my room to her room, and a doorway from the kitchen into her room. We sent the estimates in, and eventually got the OK. It probably took almost a year from start to finish because we had some permit issues, but the addition was built, and Jasmine had her new room! I am forever grateful to The State of New Jersey for giving Jasmine a room she can grow up in and live for the rest of her life. I only wish that they could help more people with disabled children make their life as easy as they have made ours. 

HYPERBARIC OXYGEN THERAPY

My youngest brother Billy is a chiropractor and was very interested in Jasmine's progress. He gave us information on hyperbaric oxygen therapy, and said that there had been good results with children with cerebral palsy and hyperbaric oxygen therapy. There were only a handful of places where you could go for treatment, one being in Pennsylvania, and others out west and in Florida. The term hyperbaric comes from the Greek word for pressure. What is administered in a hyperbaric chamber is oxygen. The idea is to reactivate  idling, dormant brain cells and to produce a more desirable environment for the growth of neuronal cells.We did alot of research on the subject, and looked at and called many treatment centers. I had decided on a place in Canada, which would be for two weeks where I would live at the facility with Jasmine. I was not looking forward to being away that long, but we went ahead and made the deposit for the  "Abilities Camp." Jasmine had just turned five and we really wanted to to try as many things as possible to help her meet her full potential. Jasmine relied solely on her feeding tube for most of her life. The speech therapist at school and I both tried trial testing of pureed foods, with Jasmine gagging most of the time when the spoon neared her mouth. Slowly but surely with alot of exercises around her face, she was getting a little less sensitive to things being near her mouth.  The amount of pureed food she would eat was very minimal. If she took a couple of spoonfuls at one time, we were thrilled. So the thought of Jasmine having the hyperbaric oxygen therapy to help her further along was very exciting. While I was mentally preparing for my trip to Canada, Jack found a facility forty five minutes away that did mild hyperbaric oxygen therapy.This was still 100 percent oxygen, but a milder pressure. We made an appointment and took Jasmine and Jill for a session. Jasmine could not go in by herself because if she started choking or gagging, the chamber would have to be depressurized before we could get her out. Jill offered to go in with her and I figured we would be getting two for the price of one! We went and talked to the doctor, and they went in for the treatment. We had to bring ear plugs with us that you would wear on a plane for take off and landing, so it wouldn't hurt their ears. Jill and Jasmine got in, the technician pressurized the chamber which took around twelve or fifteen minutes,(you have to do it slowly) and they stayed in for around forty five minutes. Jasmine was as happy as could be, not scared or bothered by any of it. Now we knew that she would go in a smaller chamber. The chamber that she would go in at the abilities camp would be a walk in one that seats maybe six people. We talked about what we should do, and we decided that instead of spending alot of money for a one shot deal, that we would spend four times more and purchase a chamber for home. Jack borrowed from his retirement fund and we got a prescription from the doctor and ordered the chamber. When it was delivered, the same technician that introduced Jill and Jasmine to it the first time, came over and set it up for us. We were on our way. Well, kind of on our way. I went to climb in the chamber, and went into complete panic mode when Jack started to zip it up. I jumped out so fast, knowing I would not go back in again. I think Jack thought I was kidding, but I wasn't. Just the thought of it now makes me panic. The technician tried to make me feel bad because he said you would be surprised the fears parents overcome to help their kids. Sorry, but this was one fear I have yet to overcome. So, this became an hour for father and daughter. I was the technician, pressurizing the chamber, and timing how long they would stay in for. Jasmine had her DVD player to watch inside along with her chewy toy, and Jack had his cell phone. We were a team, and luckily I was not the inside part of that team! The more treatments Jasmine had, the more alert she became. She seemed to see better, eat better, and started saying some words. No one was going to tell me that it wasn't because of her hyperbaric oxygen treatments. Her teacher and therapists noticed the changes in her as well, and I couldn't have been happier. I am very glad that my brother took the time to give me probably the best advice I have ever gotten for Jasmine.

HIP OPERATION AND RECOVERY

 In January, Jasmine went for her double hip surgery. She had it done in the Children's part of Robert Wood Johnson in New Brunswick, and I have to say everyone was very nice. The nurses had me put scrubs on, and I was allowed to go into the operating room with Jasmine to hold her hand while they gave her anesthesia. I was thankful that I was there for her, but I had a very hard time holding back my tears and fears. The operation itself took a few hours, and the waiting was very hard. Since Jasmine's hip joints were pulling away from the socket, they had to make very large incisions on both sides of her hips to put the hip in place with hinges that looked like something you would put on your kitchen cabinets. Thank goodness I didn't see what they looked like until they removed them a year and a half later. What came next was somewhat  unexpected even though it was explained to me before hand. We were called into the recovery room and there was Jasmine with casts on both legs. They started all the way at the top, and ended to the tips of her toes. Holding her legs apart was a stick that looked like it came from the end of a broom. This was going to be her position for the next six weeks. When she was released from the hospital a few days later, I knew I was going to be very busy for the next six weeks. Jasmine was brought home in an ambulance, because she had to be on a stretcher since she couldn't sit up. She was in excruciating pain, and would be for a long time. I had to give her pain medication every four to six hours, just to keep her semi comfortable. We needed two people to change her, because just to move her a little made her cry. I had to have someone lift both her legs up holding the bar, making sure they didn't drop her legs. Then I had to somehow change her diaper. Sometimes I would have to sit and wait until someone came home to help me. I had very little sleep for six weeks. I don't really remember leaving her room for more than five minutes at a time. She woke up all night long, and I had to try and comfort her which was nearly impossible. When she would have to go for her checkup, the ambulance had to come to take her on the stretcher. The ride was so painful, and I just couldn't wait for it to be over. Finally, after what seemed like forever, which was really about two months, the casts came off. Then she had to work twice as hard to get back to where she was physically before the surgery. It was then that I understood what Karen had said to me. If I had to do it over again and knew what kind of pain she would be in, it would have been an even harder decision to make. In the end I am glad that we did it, because it has improved her standing and walking and so far her hip joints are still in place. This would not be our only hospital stay with Jasmine. She had to have a couple of 24 hour EEG's to make sure that she was not having any seizures. Even though they came back negative for seizures, she had misfiring of the brain, which can make her thoughts and motions confused, so eventually we had to put her back on anti seizure medication. The year went by for Jasmine with no major health issues, so all in all, it was a very successful year.

JASMINE DESTINY MULDOWNEY

                                                                                   Jasmine's birth mother gave her the name Jasmine Destiny. I decided to keep the name that was given to her, because quite frankly that was her name! I couldn't imagine calling her anything but Jasmine. On July 6th, 2007, almost two years to the day that we brought her home and on Jill's nineteenth birthday, Jasmine officially became Jasmine Destiny Muldowney! It was the most unbelievable feeling I have ever had. I had been waiting for the past three years and the day was finally here. She was legally our child, and no one could ever come and take her away from us. I left that courthouse feeling like I had just won the million dollar lottery. We didn't have alot of fanfare or a big party, Jasmine had just eased into our family and became an important part of all our lives. My older children who at first thought I was a little crazy for even entertaining the idea, were as happy as I was. I couldn't wait to go to her school and change her name, call her pediatrician, and anyone I could think of to share our good news. Now I could start planning for Jasmine's future as a Muldowney, and had to start making some hard medical choices. Jasmine's hip was almost all the way out of her hip joint, and would require surgery to correct it. Her best friend Shandrea had the same surgery a few months before, so of course I asked Karen what she would recommend. She gave me an answer I didn't understand until Jasmine actually had the surgery. She said she was glad she did it, but if she had to do it again, she didn't know what she would do. It was a very painful surgery, but the longer we waited, the harder it would be to do it, and the outcome might not be as favorable. So, we made the decision to have her surgery right after Christmas. It felt good to be able to make my own choices for Jasmine.