Separation Anxiety ... Take 2

 
     Courtney has been in the hospital now for 6 days and I can't tell if it's harder on her or me! I haven't been visiting every single day because I want her to get into a routine and schedule that is consistent. We are going to be visiting 3 times per week.... granted there are some days I want to be there all day every day. But I know if I do that then every time I come and then leave again it makes her sad. I call to check on her everyday and they say that she is happy and laughing. Then when we visit every time we go to leave she cries and it takes them a few minutes to calm her down. I think when we go to leave she doesn't quite understand why she isn't going with us. So I am struggling trying to find a happy medium.
     She is getting therapy for 2 hours every single day which is awesome! I really love the center she is in because the staff are really on top of what she needs and always gives me a detailed report of concerns or updates. Most of the kids that are there were also there last year when Courtney was admitted before her surgery in May. Most of the the kids are like Courtney in a lot of ways so they are there long term. Seeing that the kids who are Courtney's age are there indefinitely has made me open my eyes to the fact that my baby may not be home often now that she is older and needs more medical care than she can get at home. It is by far the hardest thing I have ever had to do. It is a daily struggle to remind myself that since she is there she will be healthier which in turn will make her happier. I fight myself every day to not think that I should just bring her home because in my heart no one can take care of my baby better than I can. But in my head I know that is no longer the case. It is to the point where no one person can do it anymore. And definitely not in the home setting.
    So that is the update on Courtney and of course I will keep the updates coming!

     Back at home we have a lot going on. I just met my 8 week mark with the pregnancy and am showing super quick! We are beyond excited. I am of course still nervous since we are not out of the first trimester yet. I miscarried before and have had a hard time in the past couple of years carrying. The doctors said that my hormone levels were too low the last 2 times. I am staying positive and hoping for the best. Anthony and I have agreed that if anything happens we will keep trying but I will definitely have to be on hormone meds this next time around. So cross your fingers for us! 

     Anthony just started a new shift rotation and is working graveyards! YUK! We both hate the new shift but are trying to make the best of it. It is very different to not sleep next to him every night. When he is coming home to go to bed I am waking up to start my day. I just realized that by the time the next shift rotation comes he will be deployed so the only times I will get to sleep next to him for the next year is on his nights off :( Hopefully within the next couple of weeks we will get used to it and it won't be so hard to sleep without him. 

     Jordan is seeming to do be doing ok through all of these changes. But she is the type of kid who won't express how she is feeling and then once it all piles up she has a major freak out. I just keep asking her how she feels and how she is doing to remind her that I am here to listen and regardless of everything changing in our home she is still a priority to us. 

Thank you for reading. Until next time!      

And So It Begins ...... Again

     Just a little update on our journey! Courtney is being admitted to the hospital today at 5 o'clock. I sent her to school today so she will have a busy day going from school to the hospital and unpacking.
     The only thing that will be different this time as far as her surroundings is that she will have a roommate! Last time she had the room all to herself. At first I was bummed that she had to share but then as I thought about it more this means she will have someone in there with her to keep her company. The little girl who will be rooming with her is 8 years old. I'm sure they will grow to be great friends.
     As I packed up the truck this afternoon full of clothes, stuffed animals and pictures I found myself with a heavy heart. I think I had realized at that moment that now that Courtney is getting older and her health is declining, we will be dealing with her being away from home more often. Once you have a disabled child and they reach that point of going from healthy to sick all the time it is very very difficult to face.
     When Courtney was little we would have the occasional doctors appointment or minor set backs. But now as she has approached her teenage years things have changed. She has severe scoliosis and as her bones grow and become larger it is so hard on her little body to maintain. That along with hitting puberty and dealing with mood changes has been rough for her. I am sure that she is so confused with what is going on with her body but can't really express specific pains or heartaches.
     Even though she has been in this facility once before it still feels like it's the first time my baby is leaving home. I know that it will never get easier to hand over the responsibility of care for my daughter. There is a big part of me that feels like I should be able to do it all. But I have to realize I am not a doctor and picking her up and carrying her is getting harder and harder to do for me as well. It is by far the hardest thing to do as a mother to have your baby go somewhere else long term. You can't help but feel failure to a certain degree. You start to struggle with what is actually best for HER. Yes I want her home and to be with us. But where she can't get what she needs around the clock at home, how happy does that make her? I just want her to have a great quality of life and I guess if this is something that can help us achieve that then I have to face it.
     Courtney can still be checked out for a few hours at a time so she will still be attending family functions and we will be visiting her as much as we can. I hope every night when she closes those beautiful eyes she remembers how much we all love her and how blessed of a life we have had with her.
   
I have to return to packing her up and getting some things together but I will update you all as events come!

Courtney's Journey Part 2

     After Courtney's last surgery in May her health as you may know from reading has not been great. Just to give you a recap... the SDR (Selective Dorsal Rhizotomy) was supposed to help her with leg pain and muscle spasms. After her surgery she has been in even more pain and spasming like crazy. The surgery did not help her.
     We have been monitoring her digression for a few months and we all have come to a conclusion that she needs a total health overhaul. We are admitting her into the hospital again for a long term stay in hopes that we can improve her quality of life. I want my happy little girl back so bad. Our intent in doing this is to put some weight on her bones with constant calorie intake and also do some botox injections where she is having the most pain with muscle tightness.
     Having Courtney get worse has been awful to see. Your baby has a surgery that is supposed to do one thing and when she comes out of the hospital you all of the sudden have this fussy, uncomfortable and sad child. It has not been easy to see. I know the smiley angel is in there somewhere.
     The doctors did say that since she is getting older and her scoliosis is getting worse that she over all will also just keep getting worse. It is so scary to come to terms with the fact that after almost 15 years of taking care of your little child they may have to go into a home or worse .... maybe not even have a ton of time left period. It is something that I constantly try to defy on a daily basis. But with every day of painful screaming it becomes more and more of a reality. I am a believer that when we pass we go to live with our Father in Heaven. I just would like quite a bit more time before he gets her back.

     Everything else besides Courtney's health is good but very hectic. Anthony and I found out that we are expecting!! I am 6 weeks along and our due date is November 8th. The crappy thing is that Anthony will be deployed when the baby is born. With the girls not being his biological daughters he hasn't gotten to experience birth or anything like that. Unfortunately he will have to miss this one too. Our little family has progressed and became so close it's amazing. I feel so blessed to finally be having our family come full circle.
     I have still been doing work for our business refinishing cabinets and furniture and it has been very busy!! Which of course is a good thing. I am just trying to find a good balance since every day at 3 o'clock I feel like I need a nap! But I guess that comes with the hormones and cravings ;).

     I know this is a short message but I thought it would be nice for you all to have a little update.

Thanks for reading!