So many things have happened in the past 17 months of Alexa's life. I dont think I can express properly the amount of love, and admiration we have for our beautiful dream baby. Even with everything she is still a dream realized.
Our lives have been completely changed forever. The plan was for us to have our baby and then for me to go back to work as an RN. However as we've learned not everything will go according to plan. At the time of our pregnancy we had enough money saved for me to take some time off, but I would need to go back when Alexa was 8 weeks old. Kevin was in school full time, and would be taking care of the girls when I went back. With all of Alexa's needs and lengthy hospital stays I could not in good concious go back to work. We were able to make every dime stretch, and fortunately had good health insurance, but times were definately tough, and we definately drained our savings. Kevin got a job at a local factory but unfortunately they found out about our daughters medical problems and all the costs involved and they fired him. Of course they gave him an excuse, but we both realized the truth. Another thing learned about the world. There are people who only look at the bottom line, and forget to look at the man who is working hard to provide for his struggling family. Who only look at the potential rising cost of their health insurance, and dont look at the little baby fighting for her life. Kevin learned a valuable lesson as well, dont let anyone in on our daughters health issues. He did eventually get another job, but the long hours worked, and studying needed to complete his degree have taken its toll on him and our little family.
We both were exhausted all the time. It started to feel as though we were not living but just getting through the day. An average day would be built around Alexa's medical problems. Nights were the worst as Lexa seemed to have the most problems at night. She usually wakes between 15-20 times nightly, either vomitting, having apneic episodes, in pain or just needing some comfort. I stopped sleeping at night because I was terrified of missing something. So I would sleep when my husband would get home from work in the am for a few hours and then get up when he would go to bed. We have her on video monitor, and that really helps. Our daily routines revolve around doing her dressing changes, medications, tube feeds, physical therapy, occupational therapy, speech therapy, and doctors appointments. The doctors appointment days are the worst as we have to allow 3 hours each way for traffic, and then usually when we are there we try to get as much done as possible. We usually have about 1-2 doctors appointments weekly.
The strain on our family became very hard, and we knew something had to change. Through all of this we still had two wonderful little girls who look to us to hold up their sun. Kaylie is such an amazing little girl and a wonderful big sister, but her life had changed drastically. Before Alexa, Kaylie was our entire world. She had spent very little time away from us, and all of a sudden she was spending week after week with her grandparents. I remember her looking at me one day when visiting us in the hospital and pleading to stay with us. Kevin was staying at a place called Yawkee inn for families whose children are in the hospital long term. I stayed by Alexa at night on a fold out chair. We explained to Kaylie that her days would be long, and often boring, but she wanted to stay. I remember packing her up for another stay at meme's house and her asking me if she was going to have to live with them forever. It must have been so confusing, not to mention the fear and uncertainty she had about her little sister. Around this time Kaylie developed a few imaginary friends to help her cope. One of which she would explain had a tube in her belly to help her eat, and had trouble breathing but the doctors were taking care of her so she wouldnt die. Kaylie has constantly been our light through all of this. Her world was turned on its side but yet she continued smiling.
With everything that was going on we decided we needed something to give us all a much needed lift. We scrounged up enough money to take our family to Disney world. We needed to stop living in crisis for a little while and try to get back what is so precious... our family. It gave us something to hope for, something to look forward to. Now instead of worrying anxiously over all the unknown I could plan a vacation. This was the best thing we could have done. The vacation was an absolute blast, and brought us back rejuvenated and ready to face the world. We were able to have fun as a family and were reminded of why we loved eachother and loved being a family. Disney World was wonderful at accomodating us and Alexa's medical condition. I can not say enough about how great they were at making everyone feel special especially Kaylie. Who was in desperate need of that. We came back refreshed and readyfor anything.
The problem we were having is the doctors still couldnt figure out our little medical mystery. We did find out that Alexa had Noonan syndrome, but this disease didnt answer all of our questions. We brought her to a Noonan specialist, who agreed we needed to continue looking. Meanwhile Alexa had gotten a muscle biopsy done. The results were in, Alexa has a muscle disorder as well. This was not surprising to me as we knew Alexa was starting to have difficulty supprting her head and would frequently have head drops. Also Alexa started having difficulty with her secretions. She had an upper respiratory infection for over 4 months, and would vomit up thick globs of mucus. Very disgusting, but also terrifying as when she was trying to get everything out she would just start turning blue, and eventually would just give up. It felt as though she was fading in front of us. We felt so helpless trying to help her get the mucus out. I would pound her on the back, and finger swipe her mouth until we could get the mucus dislodged, and she could breathe again. The doctors ordered a suction machine be brought in, and this would prove to be very helpful for everyone. We recently got trained on another piece of vital equipment for Alexa called the cough assist. This machine basically forces positive pressure into Alexa's lungs then pulls it out, simulating a cough. After doing her treatments we are able to suction her to get all the extra mucus out. This has made her nights a lot less junky and uncomfortable. However she has had a cold for the last 3 months and I think has the beginning of an ear infection. Alsolately her apnea episodes have started being much more frequent.
Her ears have become another concern for us as we have recently found out she is losing her hearing. Apparently 50% of kids with Noonan's have a progressive neurosensory hearing loss. There is no way to know how much of her hearing she will lose, but because she started losing it so early it does not have a positive outcome. She sees the ENT doctor in 2 weeks, to be retested and fitted for hearing aids. We have begun signing with her as Alexa has no verbal words. Although she does call her sister yaya or Anya, she also says I for hi and O for no while shaking her head. She may not be able to verbalize what she wants but she surely gets her point across. Alexa is getting very good at signing and is picking them up fairly quickly. We have a referral out to a hearing school and wil be having someone come out and work with our family until she can be enrolled in their preschool. Also we are on a waiting list to have someone teach the family sign language.
We still do not know what muscle disorder she has, but her neuromuscular doctor believes it is a congenital myopathy. By looking at her muscle biopsy results he narrowed it down to a few things. The prognosis for these diagnosis are poor. We are still waiting for her genetic results to come in from her genetic testing. The doctors are looking at SMA (Spinal muscular atrophy) and something called (CFTD) congenital fiber tissue disproportion. In both the prognosis would not be good for Alexa because her bulbar muscles are already affected and she would be more likey to succumb to respiratory failure. Also because her muscles seem to be progresively getting worse it also points to a poor prognosis. Although Alexa continues to surprise her doctors the last time she saw her neuromuscular doctor he was very surprised with her mobility. She wasnt walking yet, but he believed she would. She has now started taking a few steps. He did tell us to enjoy it while it lasts as it looks like she will probably lose the ability. I'm hoping she continues to surprise the medical community with her ability and determination.
It seems that we recieved all of this information all at once. It became very overwhelming, and I became very depressed. Depression is a very real thing that so many struggle with daily, I just had no idea how crippling it can be. I had never dealt with it personally before. I was also struggling with anxiety to the point where I couldnt leave the house. I would make myself do normal things, but it became a struggle to even get out of bed in the morning. It felt like everything was so hopeless, and I couldnt even see the point of living anymore. I know this all sounds very dramatic, but at the time it was so real. I feel so selfish now thinking back on this time. I realized I needed help, that these things I was feeling was not normal. I think that evrything hit me all at once. The addrenaline rush of the past year was gone, when I realized that this was not just a passing crisis but was now our life. Things weren't just going to go back to normal, Alexa wasnt going to have the life we hoped for. I realized everything would be a struggle for our amazing little girl. It makes me so sad. No parent wants to think of their child having to live a life of struggle. I did get help. I feel so much better now, and have so much more energy to do things. During that time my wonderful husband picked up my slack, and helped to keep things as normal as possible for our little girls.
Financially things have become very difficult. Kevin thankfully is working, but definately not making nearly what I was making before. Our engine on our 3 year old car blew, and we couldnt afford to fix it. So we ended up having to rent a car for 3 months (very expensive) until we decided to take on another loan and buy another car. Meanwhile our roof started leaking, and there is no way we can afford to fix that. We are behind in all our bills. We are waiting for our tax refund to help bring us back up to date.
I know things sound so dreary but in reality it isnt all bad. Kevin finished his bachelors degree, and is hoping to get a new job soon with better hours. He is also continuing on to get his masters. I'm so proud of him. Kaylie is an amazing 6 year old girl who brings joy to whoever is with her. Alexa is developing into this great little person who is loves to tease and snuggle. She is so determined to do everything like her big sister. We feel so blessed to have her in our lives. We're also finally getting answers now, although they may not always be the ones we want to hear.
I'm hoping to keep up with this blog if not daily at least weekly now that I've caught up on everything. I need a place to write things down and let my emotions out. Hopefully the rest wont read like a tragic novel, but will only get better as our lives unfold.
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