Friday, July 22, 2011

Sleep with a Krabbe Baby?

It's been very busy the past few days.  Anaya has had a few up and down days.  She's been having apnea periods again.  She's had to have a breath here and there given to her by myself or a nurse. In the night she's been needing suction and nebulizers.  The suction is so loud that each time I use it the noise wakes Solara.

The dog got left alone in the house by accident without a walk and he messed on the carpet.  That sucked.  Anaya's getting 4 molars all at once.  That sucks too.  I just put her toothbrush in her mouth for her to bite down on.  It seems to bring her some relief.  I need stick-teethers.  Something long and slender that fits in her mouth that I can get between her teeth for her to bite on... Any ideas?

I have had huge days at Community Futures every friday for the past 3 weeks.  Mobile web design, Search Engine Optimization and QR coding classes are fun, amazing and exhausting all at once.  I really put in 100% of myself in my work when I have time to work.  Today I finished a rough draft of the Healing Anaya mobile site.  You can preview it on your smart phone here: 
I still have a couple kinks to work out.  I'm going to work on getting more temp work from home building web sites and mobile sites and facebook pages.  Also helping existing sites to get better search engine rankings and draw more attention.  I need to make a better income to support us.

I've been trying to blog more but often at night when I have the time I'm so exhausted I fall asleep early and then days go flying by.  Anaya's whining on the pillow beside me.  She says her mouth hurts.  She's uncomfortable.  Poor little love.  I rubbed her gums a bit.  The toothbrush seems to help a bit.  I gave her some pain meds.  Solara just went to bed a while ago.  It was an uphill battle.  I explained that she couldn't sleep with Anaya and I tonight because I was staying up late to work on my computer...and because she will sleep better in her own bed.  She wouldn't listen to reason and whined and cried and begged and even though I firmly stood my ground she wouldn't let it go for almost an hour.  It runs me down.  It's so hard.  I don't know what to do.  She's now asleep (in her bed).  And hopefully she won't be woken up by the suction machine tonight :)

Brent did some amazing things today.  He tidied up my house and babysat while I was at class.  I'm so thankful for his help and I think that he's doing a great job being a good daddy and a good friend.

Solara, Anaya and I have been hitting the streets delivering sponsor letters and we got some great sponsors on board for Anaya's Birthday Bash this week including:
- Bamboletta Dolls
-Kolmel Jewellery
-Remedy's Pharmacy
-All Seasons Cafe
-Nelson Star
-The Bridge Radio Station
-Tara Davis Boutique

I hope there will be more to come :)

Ok.  I'm falling asleep sitting up.  Goodnight everyone.


  1. You sound busy indeed! I pray every night that Anaya will be that miracle baby. Blake just broke through his four molars and it was so, so painful for him. Try Baby Orajel. It worked instantly on the pain. That being said, the arrival of his molars brought a crazy temperature to his entire body. I used Tylenol to bring the fever down. Poor sweet love. All our love for a good-night's sleep. xoxo Jacqueline

  2. Thank you for the update. Do your sponsors need to be Canadian? If not, my little Etsy shop, Yarn to Market, based in Juneau, Alaska would be proud to donate a baby afghan to your auction. What do you think? Please let me know/

  3. You work so hard Cam! I hope you get more quiet moments to yourself. When my daughter was teething we got her licorice root from the health food store. It's basically a stick that they can chew on. There will be little fibres with vigorous chewing and I don't know if Anaya can process them but my kids did fine and loved the sweet licorice flavour. My eldest daughter is 9 and the experience of having her twin sibblings in hospital and elevated care when home has been extremely difficult. My 2 year old son just went into hospital for four days (due to a bone infection) and it sent my daughter into a relapse of sorts. It's an awful lot like post traumatic stress disorder. I got so tired of fighting the bedtime battle that now we all sleep in the same room (in our own beds). It seems to aleiviate some of her stress. I hope this finds you and your daughters well rested and filled up with love. <3 adell

  4. hey momma!
    the first years makes stick like teethers with nubby ends that are blue in color. You can find them at a local pharmacy I am sure.
    In terms of the baby orajel, in Anaya's case I would not use it as it could pass into her throat also causing it to numb and make secretions more challenging. It could also prevent her from feeling the sensation that she has mucus in there.
    I hope you find some relief!!! I wish I could help more :(
    love you girls!

  5. It is extremely rude and ignorant of you to push Solara away the way you do. The poor child has repeatedly come to you saying she needs to be held and cuddled at night and you tell her no! that her sister is more important. Anaya isn't going to miss one night if you give the time to Solara. Anaya is nothing more than a child living in a vegitative state. Solara is a living being who suffering because of your insistance to keep Anaya going as long as you can. If you honestly think Solara won't resent you later in life its time to give your head a shake. She was better off living with her father where she got more attention and love.

  6. Angel brushes are great teethers, you can get them at mountainbaby.

  7. I also recommend the angel brush. It is a silicone little brush that they can chew on. My daughter who will be 2 in September has been chewing up a storm right now. She's teething too and it worked great for Tiia when she was little. Good luck!

  8. Gummi sticks are fabulous. I would love to send you some... Please email me with your mailing address and I will send some this week!!! Love, from Calgary Milky Mom

  9. Just read your other post so I looked this up. I dont' think it's extremely rude or ignorant at all. Children are known often to not listen and try and such so they don't have to go to sleep or want to sleep in another place. Its ok for the parents to set up rules such as "to sleep in your own bed only". And you laid down the reasons. You didn't push her away and you were firm and that's awesome. Kudos to you. I dont think the anon is not a mother, I think she is, but has no idea what does it take to take care of a disabled child. Its so easy to judge others. I am sure Solara will grow up a beautiful and compasionate person that cares about others because she learns that from you. I hope that everyone when faced with challenges like yours will not do what the anon suggests you should do, but continue to care for the loved one and make them the most comfortable as possible. And its not like Anaya suffers from permanent pain. I actually know who the anonymous is cause you can track the IP from the comment. I'll message you privately.

  10. If the suggestions above for teething do not work, try "chewy tubes". I am an OT and used these with some pediatric patients during training. I'm not sure where you can get them in your area but if you contact an OT at your local children's hospital they should be able to help you out.

  11. I have a suggestion...when my oldest daughter was teething, I peeled and washed a whole carrot (with the greens taken off). Then I threw it in the freezer. She sucked on this all the time. It worked well, and when it thaws it is all rubbery and wiggly so it didnt break off in her mouth. Worth a try! My daughter loved it!


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