Saturday, October 9, 2010


(Charlie 15 months)

We got home from the hospital on Wednesday. Before we could leave we were told to go and buy a new rear facing carseat for Charlie because she was 'too big' for her current one, and it 'wasn't safe'. We explained that it has become very difficult for Charlie to travel in the car in an upright, reclined carseat and that we really needed a flat one (which we had mentioned and asked for several times before) that she can lie on in the like the boy in the isolation room next to us had. We were told we didn't need it yet and to go and buy a new rear facing one for now and to worry about the other one 'later'. Matt and I were very irritated and expressed this. No matter what size Charlie's rear facing car seat is, it's dangerous...she is not a 'normal' child, therefore 'normal' children's safety rules do not always apply to her! We explained that in the event of a car accident, it is a great possibility that Charlie's neck could snap, rear facing or not. Her head is like a heavy, limp, bowling ball attached to a toothpick, it will fly! Also, Charlie is a stomach breather and because her muscles are weak, she crumples in an upright carseat and struggles to breath...having her duct taped flat and sideways in the backseat would even be safer than a 'regular' carseat.

We are so frustrated with people telling us to wait until later because, when/if we do, we end up in dire need of a piece of equipment that takes several weeks to come in, which can be VERY detrimental to Char's health. As it stands we've been waiting six months for her stroller (although her new physical therapist is working hard to get it asap) and she REALLY needs it now...she has outgrown her current one and going for walks is Charlie's main source of entertainment and enjoyment (aside from DVD's). We had to ask several times for Charlie's bipap machine and were told several times that she didn't need it yet, but we wanted it to be prepared and to teach her slowly how to use it and to get comfortable with it. We are VERY thankful we pressed for it, because like most of the equipment, it takes time to get ordered and come in as well as we needed a hospital stay and training to learn how to use it. When she got sick this time, her first time, she REALLY needed bipap and was used to using it BEFORE she needed it, which helped, AND we were required to bring our own bipap to the hospital with us...what would have happened if we hadn't pressed to get it months ago and Charlie wasn't trained and we didn't have one to bring to the hospital with us?! Also, although we managed to get Charlie home from the hospital in her new 'normal' child carseat, it was the scariest ten minute drive ever! She struggled to breath the whole way home, choking and eyes watering the entire time. When we tried it again two days later, it was the same scenario. So, we've decided we won't/can't take her anywhere in the car anymore, except appointments...I imagine even those trips will be hair raising experiences.

Charlie getting sick showed us just how bad things can get. Even though we're home now, she is far from recovered. She's not the same kid she was the day before we took her to the hospital. She can barely be held upright for 2 minutes now before choking, she's on bipap at night and during naps which is causing chaffing on her face and we were also informed that kids who use bipap for extended periods will most likely get some facial deformation...and I know that it shouldn't matter to me, but it does, it hurts. I love THIS beautiful little face, the one that looks like the perfect mix between me and Matt...but, I know I need to put the surface stuff aside and be happy that she can BREATH, that's what matters most. We have discussed it and seeing what a 'minor' cold did to Charlie, we have decided to pretty much become hermits. At this point we cancelled Thanksgiving dinner because we're terrified of germs. We often forget that it's not just Charlie we need to protect from germs, we need to be just as diligent in protecting ourselves too...if we catch something it's almost guaranteed she'll catch it too. The doctors told us that the 15 days we were in the hospital is considered a short stay for an SMA 1 child...and we just CAN'T go back there anytime soon...seeing Charlie lay in that crib day in and day out, no walks, and not being able to really hold or cuddle her without a million cords getting wrapped up in each other and setting the machines off was so hard...we were SO stressed and completely losing our minds!

Lately, in preparation for bed, I brush Charlie's teeth with a toothbrush that's connected to her suction machine so she doesn't swallow her secretions, I clean her nose out with saline, put on her splints, I set up her feeding pump and connect it to her, put her bipap mask on, and climb into bed with her and think, "WHOA...REALLY?!" I haven't had a good nights sleep in weeks. My 'sleeps' are full of thinking, thinking, thinking, worrying, and waking up to turn Charlie over every two hours and feeling her stomach to make sure she's still breathing. It's all so overwhelming. It's much better being home, but at the same time, I feel less pressure to make sure she makes it through the day/night at the hospital because I know there are qualified nurses and doctors there if something goes wrong. I'm very anxious and obsessive compulsive about checking and double checking that everything is OK, which definitely makes it difficult to relax and get some sleep. At the hospital we were told to have her in our sight at all times from now on, so there is no going to bed without us anymore...if we're up till 1 am, so is Charlie...but, she doesn't mind, she likes to party.:)

Here's hoping for a mild Winter with no illness.


  1. Cheri,
    I have just recently discovered your blog and had to comment. You are truly incredible! There are no words to express how touched I was when I read your about your experiences. I have 3 girls of my own and I am thankful for them everyday. You inspire me to be a better Mom to them and not to sweat the little things. I can't imagine how difficult your day to day life is but you seem to be taking it with grace and enjoying that beautiful little girl of yours. You are an incredibly strong woman and you should be proud! You and your family have touched so many and by writing this blog you are also educating people about this debilitating disease. Thank you - my prayers are with you all.

  2. adorable pic of charlie with her frog. is there a way to get the flat carseat via private fundraising? if so, let us all know. we'd love to help

  3. Hey, I was just curious if you receive nursing support services at home? Before I became a maternity RN I worked with children at home who had various medical factors. I would work night shifts with the same child and give some relief to the parents. Some had CPAP or BiPAP or tube feeds,trachs, oximeter get what I am saying. Not sure what the qualifications are...but might give you some night time rest so you can have your day together with your girl.

  4. prayers love and light
    from a stranger

  5. So glad you are home! I know what you mean about the fear of being home without the help of hospital staff and nurses. I am also glad to hear you are voicing your concerns with hospital staff. If you are still looking for a flat car seat, FSMA should be able to get you an EZ-On vest or you can order them from
    Nora started using one around 13 or 14 months. They are still not the safest if you were ever in an accident, but it will allow her to breath and be much more comfortable in the car.
    Hugs to you all!

  6. I'm so sorry that you are going through all this crap over the car seat. The thing is, they at the hospital should have known better, seeing as Charlie's condition should be well known there.

    As far as becoming a hermit because of germs that are life threatening to Charlie, I know what you are going through because of my husbands' emphysema and other chronic lung problems. Not quite the same as for a child but I know how difficult the battle to keep germ free is & it sucks big time. Curtails your life & it just isn't any fun for anyone & the thing is I know that so many people just "don't get it". Those are the people you have to turf out of your life because they are too dangerous to have around. Sad but true.

    I commend you both highly for doing what needs to be done for Charlie. I know it's not easy. The love you have for her shines through so much. Bless you all.

    Lots of (germ free cyber hugs)

    Linda xoxoxoxox

  7. Glad to hear Charlie is home. I know you are going through so much daily. Just focus on your beautiful daughter and all the people who are sending you guys love and are rooting for you. I know you might get sick of hearing it but you are a very brave and strong woman and a wonderful mother.

  8. Love to you. Cheering you on. Be brave.

  9. Glad to hear you are home. If you are in need of equipment, please check w/ the FSMA. They have a loan closet. They also have the EZ On Vest that will keep Charlie Ann safe (and laying flat) while traveling. If you have any questions, please feel free to contact me!