CHRISTENING AND MORE!

In October of 2011, Jasmine was finally christened and welcomed into St Luke's Parish of Tom's River. I had always wanted to have her christened, and her cousins were coming from Pennsylvania to be christened in front of their Great Grandmother, so we figured it was a perfect time to do it. I was so sure that Jasmine would be frightened of having the holy water poured over her head that I told Jack we should ask the priest if he could just bless her. When her turn came, Jack picked her up, turned her upside down by the basin, and Father Bob proceeded to pour the holy water right on her head. Instead of having the reaction which I was anticipating, Jasmine smiled and said "more".  She never looked holier than she did that day.

We went on to have a great Thanksgiving, and Jasmine ate a "real" thanksgiving dinner, just eating it all pureed. For Christmas Santa got Jasmine an IPAD, which she is enjoying tremendously. There are so many things for her to watch and listen to and learn from, that I could literally sit there all day with her. She enjoys her ABC's, her numbers, kids songs, music and of course Talking Tom. She is becoming more vocal everyday, trying to say new words and even trying to sing.

Jasmine went back for another swallow study accompanied by her speech teacher, and she was promoted to fine chopped foods! It was yet another great milestone that she had made, and I couldn't have been prouder. She is enjoying all kinds of foods, and I can't believe that she ever had a feeding tube.

We recently took a trip to Atlantic City with her sisters Trish and Jill, Mom Mom, Aunt Gail, and her two cousins Julia and Sophia. Jasmine enjoyed swimming and shopping, and as always entertaining all of us. We are now anxiously waiting for the warm weather so she can swim and ride her bike, and continue to grow into a beautiful nine year old little girl.

GOOD THINGS COME TO THOSE WHO WAIT!

After alot of phone calls and waiting and more phone calls Jasmine finally got her tricycle the Monday after Hurricane Irene. I have been telling her about her yellow bike for some time now, and am sure she probably thought I was making the whole thing up. As soon as we put her on the bike, she was grinning from ear to ear. She is able to pedal fast and hard, even going backwards to get her momentum going. She has not gotten the hang of steering, (or even holding onto the handles for that matter), but I have full control of her steering from a convenient handle on the back. It even comes with a hand brake for me! The other day, Jasmine did a Triatholon. First she went swimming, then went running outside in her KidWalk, and THEN rode her bicycle!!! I think I was more tired than she was when all was said and done. I am so proud of Jasmine and all that she continues to do. She started third grade this week and was happy to see her old bus driver Patti, and her first bus aide she ever had, Maria. We are all so lucky that every bus driver and aide she has had are such very special people and really love all these kids. The sky is the limit for Jasmine now. I am waiting on a toileting system for her next, so this time next year she should be out of diapers. Nothing is impossible with perserverance and patience. (and alot of work on Jasmine's part)

Jasmine Turns 8!!!

Jasmine turned eight years old on June 8th. She has continued to surprise us in many ways. Since her feeding tube was removed in February, she has gone from pureed baby food to pureed everything!! She has enjoyed pureed chicken lo mien with garlic, mac and cheese, fish sticks, mashed potatoes and more! She actually had pureed pizza too. Jasmine even received an award at her awards ceremony for trying new foods! She enjoys walking in her walker outside, and is patiently waiting for her tricycle that is being generously furnished to her by the New Jersey adoption subsidy program.
There was a surprise retirement party for Jasmine's preschool teacher Miss Helen this past week. She was a big part of Jasmine's early years as far as her socialization and learning skills. When I spoke to Miss Helen, she said that she doesn't think that her kids will remember her. I know that myself and all the parents will never forget her, and even if Jasmine doesn't remember her in her brain, she will forever remember her in her heart!  Jasmine will be going to school this summer on an extended summer program, and will be enjoying swimming at home and her first family reunion in Maryland in July. She continues to amaze me and I love her more and more every day. I now know that God does not put a limit on how much you can love someone.

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.