Sunday, May 06, 2007


One change for the better since Claire got the new meds for her skin is improved sleep. In spite of her teething, Claire only woke up twice last night! Her second tooth broke through the gum this afternoon. She is a bit congested and and drooly and coughing but it doesn't seem to be bothering her much. (She exhibited the same symptoms with the first tooth.) She has been very cheerful and napped well in spite of being away from home most of the day.

Her naptime sleep is improving too. She used to take four 30 minute naps. Lately she has been taking two 75 minute naps and one 30 min nap.

Claire is obviously way more comfortable. She will hug me and cling a little when I pick her up instead of rubbing her face against my shirt to scratch. She will sit still (or fairly still) on my lap and "talk" to me or take a bottle instead of writhing aroud and scratching her ankles together and trying to scratch her wrists etc. She must be burning way less calories... she seems to be eating a bit less too. She still likes to grab and interact with my hair when I pick her up first thing in the morning before I've put my hair up and she loves to try and grab my glasses.

Last week, she could hardly stand being in the Ergo baby carrier unless we were able to get her to fall asleep in it. (This included scratching her arms against the straps and crying). Today she spent hours in it and was completely happy. I had it on my left hip and it way quite comfortable. My only regret is that I didn't change hips part way through the day. My body is fatigued because I'm not used to carying that much extra weight for that many hours. I think I will be less tired as I get used to using it. (As aside...when I went to Walgreens to pick up Claire's prescriptions, I forgot to bring any carrier and was holding Claire in my arms as I waited in line twice. I could barely hang on to her...she was so squirmy. I was exhausted by the time I got home.

Another wonderful change is that she is happy playing on her own and doesn't require constant vigilance to prevent her from damaging her skin.

Also regarding sleep, she was able to fall asleep in my arms and remain asleep when transfered to her bed without being swaddled first. We have beed doing supper-duper swaddling for over a month because if her hands were free she would scratch and not be able to fall asleep. She still rubs her eyes and scratches behind her ears a bit and rubs her face against me when she is tired, but this is vary minor compared with her previous struggles.

Thanks be to God. I am so grateful for all the positive changes. Our quality of life has drastically improved.

Still hoping for the following... that Claire will be able to be in the carseat without rubbing the back of her hands and wrists against the straps and clasps. We currently put a couple layers of socks on her hands and cloth diaper around the straps but it is still a challenge to keep her distracted. Sometimes I have to hold her hands (I sit in the back with her while Mark drives.) I also have a more frivolous hope...but also practical considering the coming summer weather (and present 90 degree weather)... I want her to be able to wear short sleves and short pants without scracthing.

Also...we continue to pray that she will not requre heart surgery to correct her heart defect... that the Great Physician will heal her.


Anonymous said...

Thank you for posting all the wonderful details about Claire's progress. I'm so relieved for you all to finally have some rest and enjoyment with much less frustration. Thank you God for people that dedicate themselves to the healing arts. We will continue to pray for guidance and healing for Claire's heart condition too! Love, Mom

Anonymous said...

Wonderful news! We'll keep praying. ~Katie & Nathan