I am starting this blog to share my journey with others in the hopes that it helps me heal emotionally and gives me some sort of peace in my life. I am not looking for anyone to feel sorry for me or my family, I don't want people to feel sad when they read this, I want others to learn from what we have been through as a family. We are no different from any other family, we all want the same thing...we want to be happy and healthy in our lives and we want nothing more than to see our children grow up to be the best they can be. I was blessed with two beautiful daughters inside and out. My oldest daughter Jordan was born at 1 pound 12 ounces...a little early. She spent the first 3 months of her life in a neonatal unit. I would drive 100 miles everyday to visit her. I would press my face up against her incubator praying that I would be able to hold her, kiss her and feel her heart beat on my chest. That little girl has strength like I have never seen. She made it out of the NICU and was able to come home. The next few months would be some of the hardest months I would face as a new mother...emotionally, medically, and financially. I was balancing motherhood and working full-time. With Physical therapy appointments and Doctors appointments it kept me very busy. When she was 18 months old we had taken her to see a Doctor at Shriners Hospital in Tampa Florida, that is where we would get the news that would change things in our life forever. We were told that she had Cerebral Palsy. It mostly affects her legs and the right side of her body. She has been a patient at Shriners ever since that day. She has had 6 operations on her legs to help her walk better and for her to have better balance. She has done wonderful but it has also been a struggle for her and our family. She is so independent and has not let CP stop her from doing the things that wants to do. She is getting ready to celebrate her 15th birthday next week...I can't believe it has been that many years! The time goes by so fast.
It was in 1998 that I would have my youngest daughter Jenna...She was beautiful! I never wanted to put her down. I had lost out on this time with Jordan because by the time I was able to take her home from the hospital she was 3 months old. I got to spend so much more time with Jenna because I was not working at the time so I really enjoyed each and every moment that I had with her. I was so blessed to have such beautiful girls. I wanted the best for them. I wanted them to be happy and healthy. I loved their laughs I loved when they smiled those big smiles. What more could anyone ask for! Things were going great the kids were thriving they were healthy, Jordan was getting better with her walking each and everyday. Then something changed! A mother knows when there is something wrong with her child, it doesn't take being a physician to know that. We spend every second of everyday around them. Jenna was about 4 yrs old and she just kept getting sick. She was sick so much, her nose would never stop running, she had this croupy cough that would not go away. I did everything a mother could do to make sure her child was healthy. I started breast feeding from day one and continued until she was just about a year old. I gave her good food, made sure she was getting enough sleep and made sure she was not around germs. For months I would take her to and from the Doctors office never getting any real answers. I had her tested for cystic fibrosis that came back negitive (Thank God) we had run all kinds of test and still came up with nothing. We thought that maybe as she got older the croupy cough would go away. She was now 6 yrs old and things for the most part were running along smoothly. It was Summer and we were doing what every family in America does in the summer time, we were going to the beach alot, we were swimming in the pool we were always on the go. I started to notice things with Jenna were getting weird again, she was wetting her bed almost every night, she was not eating that much and she had become very tired. Again, I was back to our wonderful pediatrician picking his brain for answers. I got...well some kids take longer at potty training than others and she may just be going through a phase. Ok, so I went home and continued on with my day to day. A few more weeks had gone by and I had noticed that she had this purple like rash in her eyes lids...uugghh "what the heck is this now" I figured that when I called the Doctor again he was going to think that I had really lost my mine. We would spend the next few months trying to find out what and where this rash was coming from. We saw a few different eye Doctors and had a CT scan done of her head. What they had found was inflammation behind her eyes. So we then tried all different kinds of steriod creams, we changed soaps, we changed her diet...you name it we did it! Still no change. Now her nail beds looked like she was chewing them raw, I would yell at her all the time, "stop biting you fingers" She would tell me "Mom. I swear I am not biting my nails." Now we were into September, she was still not eating that much, she was still wetting the bed at night, she still had purple eye lids and she still looked as if she was eating her finger nails for dinner. We had gone to Disney World for a few days and the whole time we were there she kept crying and saying that her legs were hurting her. As a Mother my first thought was..."ok, her sister is in a wheelchair and she wants to be in one as well". I would say over and over to her..."Jenna, there is nothing wrong with you now stop your crying and walk!" These words haunt me everyday. when I think back to that weekend I only wish I knew then what I know now. When we got home things were pretty much the same routine. She was still sleeping alot and not eating too much and we just thought she was going through a phase and that it was going to pass.
October of 2004 had came and it was now Halloween time and the kids were getting so excited to go out and Trick or Treat. Now there isn't a kid that I know that doesn't like to go out and get free candy! They would walk miles for it! LOL We had only been out for about 30 minutes and Jenna started again..."My legs hurt" uuggghh!!! Here we go again. We didn't stay out long that evening and headed home where she just fell into bed. Still we were going on about our lives and I just kept thinking that this was all going to pass. Maybe she was having growing pains in her legs? Maybe she just wanted some extra attention from me? We were now into the month of November and Jenna had gone to spend the weekend with her Nana, they do all kinds of fun stuff together! They were ripping off wall paper and my Mother noticed that Jenna could not put her chin to her chest and that she was having problems putting her arms over her head. "You better go have that check, that isn't normal" She would say to me. I was like..."ok, Mom I will, I know there have been some weird things going on with her." As a Mother we don't want to run to the Doctors everytime that our kids sneeze, but we don't want to overlook things either. I didn't run to see the Doctor at this point I wanted to see if maybe she had slept wrong or maybe she pulled a muscle or somethink like that. I don't know if part of me was scared of what the Doctor would say or if deep down I didn't think anything was really wrong. It was now Christmas and we had gone to visit family in New Jersey for the holidays. It was so nice to be somewhere cold ( we live in Florida). We also don't have stairs in Florida and when Jenna could not even climb a flight of stairs it was then that everything hit me. What in the world was wrong with my beautiful daughter? I remember crying because I felt so bad about all the times that I told her she was fine. When we got home I called her Doctor and made an appointment. It was the first week of the new year and we went to see our Pediatrician, he did a complete physical with all kinds of labs. I remember him saying to me..."ya know sometime autoimmune diseases can present with a funky rash like the one she has on her eyes, let's see what her labs show and we will go from there". The labs came back and her CK ( muscle enzymes) were through the roof and there were a bunch of other labs that were off as well. I had already had an appointment set up with a dermatologist for the 13th of January 2005 but our pediatrician wanted us to see a Rheumatologist and a Gastroenterologist ASAP. We got in to see the dermatologist on the 13th as planned and he had said that she had Dermatomyositis. Dermatomyositis! What the heck is that? The Dermatologist had suggested that we see a Rheumatologist. When he told me that she had Dermatomyositis I was thinking, "ok, this isn't so bad, Derma, that is something to do with the skin" Not too bad I can deal with that...WRONG! When I even went to see the Rheumatologist that would be the day that would change my life and my daughters life FOREVER!
I remember sitting in his office waiting for him to come in and do his check-up with her. It felt like hours that I sat there waiting. He came in and made us feel comfortble. He did an exam on Jenna and sat and spoke to us about her diagnosis. He had said there are 5 signs and symptoms of Dermatomyositis and she had all 5. He admitted her that day and got her started with her treatment. He also said they would do a muscle biopsy to confirm the diagnosis. This would be the beginning of our non-stop rollercoaster ride. I am sitting her today thinking back to that very day and it feels like yesterday that we got her diagnosis. It has been 5 years and 9 months! She had been sick all that time before. All that time I was telling her to get up and walk, all the times I would say that she was fine. Talk about guilt...I had it. It was so hard for me in the beginning. I had no idea what to do, I had no idea what this disease even was. This was the beginning on our road with DERMATOMYOSITIS. I wanted to just give you all a bit of info on how it all started. I am going to continue to write so that I can share this with all of you and maybe another family that is dealing with the same issues that we are. Thanks to all who have been there to support me and my family in more ways than I can put into words. You all mean so much to me. Thank You.
No comments:
Post a Comment