Thursday, September 30, 2010

Friday, October 1

Fact: this week has not been boring.

Between 11 a.m. Monday and 11 p.m. Wednesday we made 2 unexpected trips to Children's Hospital of Wisconsin after Charlotte's GJ Tube came out. Monday morning it came out when Charlotte crawled across the living room before Patrick could move her pump bag and the weight of the bag pulled it out. We returned to Houghton at 12:30 p.m. on Tuesday, dropped Charlotte off at daycare before even going home, and received a call from her teacher at 3:50 p.m. that another child had pulled out her tube. Lovely!

Luckily CHW was amazing as usual. She received a low profile GJ Tube, so now she has a port similar to the Mic-Key button. Charlotte's GI Doc, Dr. Stephens, and Speech Therapist, Dr. Arvedson, both gave up their lunch breaks to see Charlotte while we were in town on Wednesday (saving us a planned trip at the end of October). Both were pleased with how she's doing. Her weight gain has been faster than ideal, so we are changing her feeds from 24 cal to 22 cal/ounce.

In order to give this newly mobile baby some additional freedom (and hopefully prevent tube issues) we're going to increase her feed rate to give her some pump free time during the day. Currently she receives 40 mls/hr over 23 hrs/day. We're going to increase 45 mls/hr with 3.5-4 hours off and if that goes well to 50 mls/hr with 5.5 hrs off and potentially even 55 mls/hr with 7-7.5 hrs off.

Weight: 19 lbs 9 oz (she lost some weight over a couple days without eating regularly)
Length: 27 inches

Our second trip to Milwaukee inspired the interventional radiologist to investigate alternatives to us driving there for every tube issue and had some potential success - a doctor in Marquette is willing to try to place the GJ Tube if it comes out again. Yay!

On to other, more fun things:

Charlotte has become a busy girl. Now when we Skype with grandparents it's a family affair. Patrick or I move the laptop, Charlotte crawls after the laptop, and Patrick or I follow along with her pump bag.

Charlotte can now pull herself up just about anywhere (couch, crib, against a flat door, etc). Here she is in her big girl PJs. Yesterday we put a crate down on the kitchen tile and Charlotte stood up and used it as a walker to get around. She seemed a little surprised each time it slipped forward a few inches, but she would steady herself and walk her little legs right back up to it.

She's full of smiles!

Last week Monday - Wednesday the Hoenisch's visited from Madison. It's great to see Andy and Robin and so fun to watch Calvin and Charlotte together.

Then this past weekend Grandpa and Grandma Distad visited from Minnesota. Charlotte loves the extra people to play with and we even took her to the park. She's not a fan of the swing, but she enjoyed standing and talking to another baby she met there.

We got a new travel bed for Charlotte (just in time for our trips to Milwaukee I might add). Charlotte slept comfortably in the Peapod Plus, a little tent that folds up nicely, is light, and can be used on the beach for shade during the summer. It's also fun to play in.

Monday, September 6, 2010

September 6, 2010

Charlotte had lots of fun this weekend with Grandma and Grandpa Russell who visited from Eau Claire.

She showed off her new love of climbing. On Friday she started moving from her knees to her feet when pushing off of objects about the height of a large CD case. This is now one of her favorite things to do.

Charlotte took another trip to the beach! Here she is with Grandma Russell. Next summer we're going to get her a beach bucket and scoop set, but for now a plastic cup and spoon will have to do.

There's no better way to end the day than reading stories with Daddy.

Charlotte keeps growing! This morning she weighed in at 19 lbs 0 oz. At this rate she'll have no problem clearing the 20 lb mark necessary for a low profile tube by October when we return to Milwaukee.

Perhaps I'm feeling optimistic, but today Charlotte gave me reason to be hopeful that eating is in her future. At daycare Charlotte has been tasting pear juice without too much resistance, so Patrick and I decided to pick up some stage 1 pear baby food this afternoon and Charlotte ate it! We've tried apple sauce and mushed bananas in the past and she would tolerate some on her lips, but she didn't really swallow much. Today I put the baby food in her mouth and while she didn't ask for more, she did swallow it. We also bought stage 1 sweet potatoes, carrots, bananas, and apple sauce so we'll see how she likes those.

She is such an awesome baby! We are so very grateful every day.



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