Thursday, March 15, 2012

Poor Little Amber

She is still very sick :(
This picture is from last Tuesday on our way home from her appointments.
 She fell asleep while she was trying to eat the tag on her doll. 

This Tuesday she did not want to get out of bed!
The pneumonia Amber was fighting last week is gone but unfortunately over the weekend she came down with a viral infection. For Amber viral infections are bad news. There really is not much we can do for them medically, no antibiotics it just has to run it's course. This one has hit her pretty hard, it didn't help that she caught it at the end of having something else, it's been rather touch and go all week. We have her on the highest flow of O2 she will tolerate. We're keeping up on her medications to help fight secretions, fever and we have her on one of her comfort care meds to help with breathing and heart rate. We've gone to all feeds through her g-tube and feeding her only pedialyte. So far things have been going alright, it's been a struggle for her but we've been managing. 
Last night and today she went back to demanding a bottle and tolerating it pretty well. She seems like she's getting over the viral infection but unfortunately her poor little body is so tired from fighting that now she's having breathing issues. All day today she's been very lethargic and having episodes of her O2 levels dropping and some mild cyanosis. At this point we're concerned that her CO2 levels are on the rise again. There isn't much we can do for this. We could bring her in and put her on a CPAP machine, something we've ruled out before because we don't think she would cooperate with it and could make her more upset. Her levels were elevated last spring but came down on their own once she was feeling better. We're really praying that this is what's going to happen this time around. We'll be keeping an eye on her tomorrow and seeing how things go.
Feeling a little better yesterday, playing with Daddy.

This also means the appointment I made a year ago for her with the augmentative speech clinic will have to be canceled. This is really a bummer to me because I have been fighting since she was 1 for her to get speech help of any kind. I was so excited to get her into the clinic and so excited to see what they would be able to do for her. I can't explain how hard it is to not be able to communicate with your child, especially once you start to see how frustrated they get in their inability to communicate. Hopefully we can get her appointment rescheduled soon and not have to wait another year. 
Hopefully we can just get her feeling better and back to her fully happy self!!
And here is a non sick picture from a few weeks ago. Daddy with his two babies! Amber's telling Charlie some sort of story here, I know she doesn't look too happy but she was!


  1. I can only imagine how difficult it must be not to be able to communicate with Amber ... but - while it may be difficult to understand her, I'm confident that she understands you...loud & clear .... how much you love/adore her. You speak love over and to her so fluently/faithfully/consistently. She is one blessed baby girl in that sense. Hugs & Prayers for your family.

    I have a copy of Playmaker's school project hanging on my fridge. Will try to remember to bring it to church on Sun to give to your mom or dad.

  2. She looks like such a lovely little girl! I know I don't comment often, but I read every post you write. Your family (and specially little Amber) is in my prayers. xxxx

  3. Thank you so much for taking time to post this Schuyler. I didnt read it til just now...I need to look at my account and fix it so I will get notifications when you post something new.
    I am aching for you today because I know how much you were looking forward to the speech appt. When we were there in Feb I realized how much more Amber tries to communicate and how frustrating it must be for her and for you and Luke. We will pray that the rescheduled appt for Oct can be moved up even closer when she gets feeling better.
    Words cant even explain how much my heart aches to be so far away from you. I feel like a constant bother calling and writing notes to see how Amber is doing, but I am forever restless..all day and all night..just wondering how she is doing thru sickness. It is not a word I ever use...but whenever I think about the 6 hour distance between us the only words that come to mind are..It sucks!!
    You are the most incredible parents I know. You make joy out of each day and find delight in the simplest things with Amber and Charlie. Please know that you are in my constant thots and prayers, that I think you are awesome,exceptional parents, and that I wish there was more I could do to help and to give you periods of refreshment. I know your surgery is scheduled for Monday Skye, and I dont know how that is going to play out with Amber being so sick. I've told Luke several times that I would be very glad to come and help you...can pack a bag and be there in 6 hours if you need me!
    I love you all, I miss you all, you are at the very forefront of my mind and heart and prayers 24 hours a day! <3

  4. I am saddened to read about poor baby Amber difficult journey.I can't imagine how a parent feels when you see your precious child struggle so hard.I have been suffering from acute Bronchitis for weeks now and on meds for it. I know how I strugggle to breath when I get into coughing spells and can only imagine the discomfort a baby has not understanding why she feels so bad and cannot breathe comfortably!! I hold baby Amber in prayer that she heals and feels better each day. I pray for you the parents who are at her side constantly.You don't offer flowers with your hands but with your heart. I send healing flowers your and light to you and Amber. Anna