Here are a few pictures from the last couple of days. Altogether they look a bit misleading, Charlotte spends a big part of each day sleeping...of course its when shes up and playing that out comes the camera.
Supper time Monday the 29th, yes, she was actually asleep. She ate quite a bit of KD and cream cheese first though so that was great. I would like to point out the shirt she is wearing... she has worn it all week, it has been a favourite since the day she got it, lately she insists on wearing it. When its time to get dressed in the morning she starts tugging on her jammies saying "Shirt, shirt." In case I'm not sure which shirt she means she will point at the picture on the wall of her wearing it from last winter. This morning I told her it was dirty and in the laundry and she had a little redhead/steroid fit and yelled "SHIRT SHIRT SHIRT" at the top of her lungs. Out of the laundry it came.
Here we are just today (Tuesday the 29th) doing some crafts, decorating little trinket boxes. She found a sparkly purple heart in the sticker pile and showed me, "Shirt!" Yes it looked exactly like it, so we decorated her box to look like her shirt.
Here she is again after supper, after sleeping most of the day today it was nice to see her up playing for a couple of hours. Making sure all her kitties got their milk, maybe she thought that way she had to drink less herself? Thanks to everyone for the gifts for the girls, they are loving the crafts, stickers and especially the kitties.
I heart DAD, I heart DAD, I heart DAD... its been like this for a year. There is no denying that she is a daddies girl. Today I had an idea. I picked up some iron on butterflies to make the girls matching shirts... when I noticed that Charlotte's shirt had a little heat at the bottom! Ha ha! I'm feeling so clever, now watch tomorrow morning shes going to have a fit. I'm going to have to try really hard to not take it personally. I know she hearts Mommy too!
Charlotte's doctors think that she has been fairly steady this past week. Words are chosen carefully to not give the impression that she has improved but her condition has not worsened. One of our biggest concerns is that she hasn't pooped in a long time, all the different drugs that shes on coupled with the fact that shes not eating and drinking well, and that she is not mobile... we are in trouble. Another concern is pain relief she is on an oral morphine and a big steroid dose that is keeping her comfortable, but it always seem to need juggling. The morphine is one of the reasons why she is so sleepy all day. We appreciate your continued prayers for healing for Charlotte.
Hey Allison,
ReplyDeleteI was reading your latest blog and noticed you mentioned something about Charlotte not having a bowel movement in a long time. I had the same problem with my 4-year-old autistic son. He was only going once a week, if that, when he was 2 years old. My doctor told us to try putting some metamusil in his juice once or twice a day. Just a 1/4 - 1/2 teaspoon. It worked wonders for him and he started going every other day within a few weeks. He is now going every other day without having issues with his BM's. We have also increased his fibre intake with ordinary foods. If Charlotte likes popcorn or is allowed popcorn, that has lots of fibre in it too. We get the kind of metamusil that is flavorless, gritless, and transparent when mixed. It wont hurt her and it should help with getting her stools going.
You also mentioned that Charlotte likes Mac and Cheese. There is a Kraft Mac and Cheese called "Smart Mac and Cheese." I saw some today that has fibre incorporated into it. Some have Flax seed or are made with cauliflower. But there was one with "Fibre." Maybe you could try that and it might help with her BM's. I think at Wal-mart they are selling for $1.20 a box or something. I usually buy them when they go on sale.
Well, hope she goes soon, I know what it is like having a child go a LONG time without a BM. Also I learned (from having an autistic son) that not having a BM can contribute to unnessesary behaviours like frustration, anger, fits, growling, etc. Trust me, I know. If my son doesnt go every other day, he gets super irritated, growly, and his "bad" behaviours come full throttle.
Anyway, gotta go. Hope this helps a little with the BM situation.
Nicole.
Your girls are beautiful!! I feel such heartbreak when I read your posts. I have a little boy who is Charlottes age and cannot imagine the day to day struggle you all deal with. I pray Charlotte continues to have more good moments so you can treasure these memories. I feel like I am walking on this journey with you as you type your entries. As a mother I feel your joy, pain, and sacrifice and love you show towards your family. I will continue to ask for healing for little Charlotte. She is the ultimate brave little soul! (((HUGS))) to you all
ReplyDeleteYou have a beautiful, amazing family!!
ReplyDeleteYou are in our deepest thoughts. We only know you through Yolanda at school, but have had you in our thoughts since meeting little Charlotte.
We can not imagine what you are going through at this time. If ever we can provide support, whether it be a play-date for Yolanda or anything, please do not hesitate to call.
Karen and Shawn Harris
Allison and Rob,
ReplyDeleteThank you for the updates. It is nice to see pictures. Crafts are such a great thing to do with your girls. And the shirts are adorable.
I along with many of your old Erskine friends have been following your blog. Please know that you are still in our thoughts and prayers.
Candy Leschert
Just wanted you to know that our family prays for your family every day. You don't know us, but the love of Christ binds us together. Know that children and adults everywhere uphold you daily in prayer.
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