*sigh*

Sometimes I think that I should never have called this blog "Always Something". Maybe if I had called it "Nothing New" or "Our Boring Blog", then our life would be a lot simpler today...

Yesterday was not a good day, but I feel like posting anyway. This is my hobby, like some people do scrapbooking or card making and I need the distraction, especially today.

Amryn saw the pediatrician again, and she has only gained 1 and a half ounces since last being weighed. This could be because she has been vomiting so much, but maybe also because she needs more food, so we have increased her tube feeding to 70 ml every 3 hours. The doctor also noticed her cry seems weaker and her muscle tone weaker as well. He prescribed yet another medicine to fill her tiny tummy with...this time it's supposed to help keep things down. It hurts so much to leave the office, like a defeated feeling and sick to my stomach.

Over the past few days, I've been feeling more and more panicky. Robyn is sick, I'm not feeling well, Amryn is not doing well, and the medical "help" we are supposed to be getting is not coming through for us. I asked 3 different nurses to change Amryn's NG tube because her nostril looked sore, and no one will do it for "liability reasons" They will, however, stand there and watch me put it in if I want...and I've never done it before! Go figure. The other suggestion they have is to take her to the hospital, but at the hospital they told us our home-care nurse could do it!
When we first asked for respite care, part of the reason was to get help in the mornings when I have to get Robyn ready for school. Then, this morning there's a knock on the door at 8:20 from a nurse who wanted to come in for a "meet and greet"!! They scheduled this even though I had told them it was too early, and that I didn't think it was necessary to "meet" the nurse on a seperate occasion, since we will most likely be having multiple nurses and I don't want more people coming through here than necessary. Sometimes I feel like our house has a revolving door. Anyway, when the nurse came I was still in my pj's and the house a disaster, so I sent her on her way again... yay me, I'm getting bolder!
We also keep getting conflicting information, like one telling us to put saline on Amryn's sore nostril but forgetting to tell us it needs to be rinsed (can irritate the sore more if not) Another will tell us to use boiled water to flush her tubes, the other will say never to do that, only use sterile water...it's frustrating and I think I'm starting to panic that we are more capable of taking care of Amryn than they are!
We seem to get the run-around whenever we have questions.
Then, the respite care we were promised the other night didn't show up...
Thankfully Amryn was good that night and I was happy to have her beside me all night.

I took Amryn to the mall quickly yesterday to try to buy birthday/christmas presents (nick and Lydia have birthdays next week) and was on the verge of tears the whole time, knowing that I'll probably never be able to do that again, and seeing so many healthy babies everywhere... Then last night I tried to go shopping a bit again (Nick pushed me to go out and said he didn't want me to come home until after 9!) but I almost got in an accident- driving through tears is not safe...

So many questions, and I know the answers in my mind, but my heart hurts too much to let reason in. I've been crying a lot more lately, and I think its because I'm finally realizing that Amryn is not getting better. I have been in denial up till now, thinking that a miracle could still happen. And I know all you readers are thinking that I should still be praying for a miracle, and that with God anything is possible, but.... I also have to come to terms with the reality that Amryn is very ill. It's easy for others to say to stay positive, but when you have to watch your child quickly fade and get weaker no matter what you do to help...

It just feels like I'm drowning sometimes. But I realize that it is just self-pity and I'm being selfish to want Amryn to stay with us. Please pray that I will be able to cope with everything and still be able to be a mother to the girls and a wife to Nick. Steph, who recently lost her son James to a genetic disease as well, wrote to me that she hopes I stay in "survival mode" and not crash, and I hope that is not already happening. Please pray that I can stay in "survival mode" and not think too far ahead. There will be lots of time for grief later.

Sorry for the sad post, but it is part of the process, I suppose. I feel a bit better now after getting it out, so thank you for listening.
I don't want you all to feel sad, and so you know that we still find joy in the day, I'll end this with a funny photo we took the other day.
We don't have tv, so our girls find other ways to be entertained:



Actually, they were really watching Robyn's favourite stuffed dog and Lydia's yellow blankies spin in the washer (: And all the clips in Robyn's hair are courtesy of Lydia the hair stylist.