Thursday, September 27, 2007

Gracie's school

We are SO thrilled with Gracie's school. Josh and I both spent a day there this week and it is so amazing that we are eager to send our little 3.5 year old to public school every day! Her 2.5 hours in school are packed full of things that we can't provide at home - PT, OT, speech, a consistent approach, one-on-one consistent attention and coaching, other kids, tons of toys, crafts, stories, ABC's, days of the week, colors, routine tasks, songs... Everything that she does in preschool develops her skills more and more. Her para, Kelly, is so patient, consistent, and kind with her - she makes her work hard, she doesn't do a THING for her that Gracie can do for herself and Gracie knows it so she works hard for her! her therapists love her and are so excited with her. They have learned her so well that they know how to motivate her, they know that when she's hungry she's a bear, they know that she loves taking things out of containers and loves things that make noise - they have really applied themselves to learning Gracie so that they can teach her. Gracie loves school and does so well there!

We are grateful that Gracie is now a citizen and has her passport so we can travel anywhere that we want! We are still working on getting medicaid so that we can have access to augmentive communication devices. Please pray that this goes through soon. We are approaching a year with Gracie - she'll hit her anniversary as we hopefully go into labor to get her a little sibling! She has changed SO much in this year! I pray that her birth mom can see through the photos and the reports how much her baby has grown up and blossomed into a little girl. I pray that she can see that her decision of love for Gracie has given her a chance to thrive. I pray that someday, Gracie will be able to give back to her birth mom!

Gracie had another seizure - a scary one with trouble breathing. I was working night float, so I wasn't home and Josh (for the first time) felt panicky because she was breathing so poorly. She ended up admitted to the hospital and did well but we spent a long day in the hospital with my poor sister and her family hanging out with us at the hospital. I went a long 36 hours without sleep and back to work that night... 'yawn!' We're increasing her med dose (Keppra)... pray that it holds her!

"Baby sister" is growing well - and mama is doing well too. We're going on 34 weeks! Only 6 weeks left!

Monday, September 17, 2007

Hair and babies

Beth had her baby (the "prego" on the far right in the photo) so that means that we're only 2 months away from ours! Caleb Murray!

I'm most discouraged by the weekly screaming sessions that we have over Gracie's hair. She still screams bloody murder at any touch of her head that resembles fixing her hair. She's got lovely hair, but most of the time it looks messy because the screaming is so tiring that I can't handle it frequently, not to mention the fact that even nightly touch-ups and oiling invoke screaming so that my precious 1.5 hours with her in the evening are not spent playing or snuggling but rather her yelling and screaming and looking at me with pitiful eyes. Not quite the mommy-daughter bonding that I cherish. I bought an organic olive oil spray which helps (less hands-on the scalp) but I still need to fix her hair well once a week and that just wipes me out. Good thing that she loves bath time which preceeds hair fixing!

Please pray that Gracie's tolerance for hair fixing would improve as hair is such an important thing for me to keep nice. Hair and skin are so important to the African American community that it is easy to feel judged if these aspects aren't perfect. I do want to convey that we love and cherish Gracie and take care of her. Pray that I don't cut off all her hair!! ;-)

On a positive note, Gracie has a new speech therapist this year who has started "picture exchange" with Gracie. This is a very defined curriculum pattern for communication and has a set training program which apparently has very good success. Sara says that Gracie is doing very well with it. She is going to train Josh and Grandma Sue on Friday and me next week! This is so exciting! We may finally have an effective way to communicate with Gracie! Sara is also meeting with the augmentive communication specialist for the district this week and may have additional suggestions for us. Very exciting!

Oh, and Gracie is nearly 50th percentile for her height!!! Her weight still lags behind, but she's on the growth curve for weight too! Unbelievable!

Saturday, September 15, 2007

Back to school

Gracie was back to regular school this week. We really love her school and she seems to really enjoy the 2.5 hours a day of preschool and therapies. Some of her therapists and teachers hadn't seen her all summer so it was so rewarding to hear everyone's shock and amazement and encouragement at how much she has grown physically, socially, emotionally, and developmentally. She is doing so much more now than she was just in June and is so much more assertive (good and bad!). It was very exciting for us to hear their excitement about our precious little girl.

She's doing great sleeping on her own, still has rough nights (what kid doesn't?!) and her pediatrician yesterday said, "just let her cry! that's normal!" Ok, okay. So I'm a strict mom during the day but due to my own need to be there for her if she seizes, I'm a little more jumpy at night when she's not under anyone's direct supervision for a whole 8 hours at a stretch! She still often hates to go to sleep and fusses and cries for hours before going to sleep, but often she does very well. We're weaning off of singing and reading for an hour to just praying with her, rubbing her back, and leaving her. I'm turning the monitor down a notch so that I don't have to hear every breath of hers but just lots of movement. And I'm trusting God to wake me up and get me into her room if she is seizing.

I praise God for giving us Gracie, not just because she's so amazing and we are so in love as a whole family. But also because she has taught me so much. I have learned more through her care than in a lot of residency! What is it that patients/families need to hear? What are the loop holes that patients fall through? What are the day to day challenges with chronically ill kids that parents may not be asking me as their doctor but may actually be more important than a dosage change or a referral to a specialist? What services are my patients not receiving that could be improving their lives?

God is so good!

Wednesday, September 5, 2007

pregnant photo and beautiful Gracie

29 weeks pregnant, flanked by my fellow "pregos" at church - Wanda is 22 weeks, Beth is 37 week!

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