October 27, 2010

Happy Halloween! A bit early, but we're celebrating all week. We carved Charlotte's pumpkin tonight since we're heading to Eau Claire on Friday for the weekend.

All ready to clean out the pumpkin!

Perhaps she'll be ready for some pumpkin pie by Thanksgiving! It was pretty hilarious to see her nearly chomp on this huge piece of pumpkin. I see this photo as evidence that the GJ Tube has been a success; she is willing to explore with her mouth and hopefully that'll turn into swallowing and eating at some point.


We made it to Marquette and back yesterday in the "land hurricane" (I don't think it was an official land hurricane yet - it really wasn't bad at all). Charlotte was prescribed glasses. She is nearsighted with a refraction of -4. The doctor didn't think they were absolutely essential until she starts walking, so we're not rushing to fill the prescription. Soon, though, some adorable pink, purple, and/or sparkly spectacles will join Charlotte's wardrobe.

October 22, 2010

We couldn't have asked for a more beautiful fall! The colors were incredible, and now that the leaves are on the ground Charlotte has had lots of fun with them.


Last week Sunday - Wednesday I went to a conference in Washington DC. This was the first time I've been away from Charlotte for more than one night and it was hard on both me and Patrick. My first night away Charlotte was up from 2:30-4:30 throwing up, so Patrick was extremely worn out from the beginning. Luckily the nights/days following were better. Charlotte got to go to daycare full-time for the three days I was gone, giving Patrick time to run and accomplish miscellaneous tasks while a single parent.

I did get to Skype while I was gone, and I've never had such a desire to hug my laptop! Without trying to give Charlotte a complex, I brought her back a "Future President" onesie from DC. No pressure. :)



Today we made a trip to the pumpkin patch, and Charlotte investigated this pumpkin at great length before deciding that it was the one.


While there we got to see a pumpkin catapulted over a field. Patrick and I thought it was awesome, but Charlotte was more interested in watching the people around us. Maybe next year she'll be watching the right direction when the pumpkin launches.

Tuesday we head to Marquette for Charlotte's eye exam. We're looking forward to finally knowing more about how good her vision really is. There's a chance she could leave with a prescription for glasses. If she does, her daycare told me this week to call them before we order any glasses because certain clinics in the area are willing to donate frames to Little Huskies when a child needs glasses to prevent the other kids from wanting to pull them off of her face (I'm sure she'd do enough of that herself). Just the latest reason we love Little Huskies.

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.

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.

August 30, 2010

Since our last blog post I've been an absentee parent, only coming home to sleep a few hours before hurrying back to work for new student orientation. It's exciting to have all the new students back on campus, but I'm very happy to have spent this evening with Charlotte! I missed her (and Pat) very much!

While I was working Patrick took Charlotte on a tour of the Keweenaw and snapped the above photo. So beautiful! That same day he took Charlotte to see her first triathlon, but unfortunately it was a bit chilly for her to be out too long.

It looks like she enjoyed the time she was there, though. Here Patrick caught her mid-clap. She's started clapping pretty frequently now, and that's been fun.

In addition to clapping, Charlotte has developed many new skills over the past couple of weeks. She first crawled while skyping with my parents; Patrick would pull the computer away and she would crawl toward it. For a while the laptop was the only thing motivating enough to get her to crawl, but that's quickly changing.

She can sit up from lying down completely on her own. It's amazing how coordinated she's become in a matter of days. She is able to pull herself up onto her knees and I'm sure it won't be long until she's able to get up onto her feet.

Since Charlotte can now sit up independently and is starting to pull herself up we lowered her crib tonight. Here she is checking out her new digs.

Such a sweetie! I love seeing her smile and here you can see her teeth! She had about 4 last I checked - two on top and two on the bottom.

The last weight I could find in her blog was from July 30 when she weighed 15 lbs 15 oz. Today she weighed 18 lbs 14 oz. Wow. This is faster weight gain than is recommended for infants and we keep waiting for it to level out, but so far, each day we're shocked at the new number on the scale. Charlotte's pediatrician recommended we feed her less per day, but the dietitian at Children's Hospital wasn't concerned. It's tough when you have to choose whose advice to follow, so we've decided to relax a bit with the amount of time Charlotte is on her pump. Rather than rushing through feed changes to make sure she's being fed for 23 hrs/day we give her a few extra minutes tube free to play and bathe.

The new tube has helped Charlotte to throw up less, she now only throws up 3-4 times/day and it's a small amount of bile. We do about 3 fewer loads of laundry per week and have plenty of extra burp cloths. Yay!

Charlotte loves daycare! At first she wasn't quite sure how to react to the other kids but now she enjoys watching them. She still doesn't like when they touch her (one girl in particular was fascinated by Charlottes hemangioma and wanted to poke it) or play too close but when we dropped her off today she was very interested in what the other kids were doing, so I'm sure she'll be joining in soon enough.

It's a good thing she likes daycare because she already got her first cold. It was pretty nasty and even gave her pink eye (who knew! Not all pink eye is contagious, it can be caused by a cold.). Her nose is still runny today, but she's back to her cheerful self. We're glad she's building up her immune system but are bracing ourselves for a long winter of runny noses.

August 11, 2010

With drilling going on across the hall, Charlotte got an early birthday wake-up call yesterday. That made for a cranky morning. But after a long mid-day nap she was ready to celebrate and entertain!

Katie spent the previous couple of days baking and frosting cupcakes to bring to our respective workplaces. Charlotte and I dropped some off at the library and then visited Katie at work where she got some more birthday gifts. Here she is sporting the stylish wear her babysitter Andrea gave her:





Then family from Florida and Minnesota visited. We all went out to dinner (Charlotte brought her own) and returned to eat cupcakes....or whatever you would call this:




Last week Charlotte got a new, smaller/lighter feeding pump. We still had to use the bag from her Joey pump, but today she got a stylish new accessory:

Infinity doesn't seem like a good name choice. Enteralite Temporary inspires more confidence.

I make this look gooooood.

It's much smaller and compact than her other setup which we hope will help as Charlotte becomes more mobile:



What you don't see in that last picture is Charlotte tipping over backwards soon after it was taken. So we're not quite there yet, but soon!

Tomorrow is Charlotte's first day at daycare, a milestone we've anticipated and dreaded at the same time. But Little Huskies has pretty much won us over already. Today I took Charlotte there for a short while to show the staff how her pump worked and other general care instructions. I know we're paying them, but we are appreciative that they are willing to take her in given that she requires a little more attention than most of their charges.

One of our main concerns is her tube getting pulled out by inquisitive little hands (other kids and hers). But they let me know that they purchased little backpacks and tubes for all the kids to have in order to downplay Charlotte's curiosity factor. Like I said, we're paying them, but that is over and above and I think it makes going into this much easier knowing there is that support there.

August 10, 2010: The Good

August 10, 2010
Acutal Age: 12 Months
Corrected Age: 9 Months
17lbs 3oz

Happy Birthday Charlotte! Enjoy your new enteral feed pump!


It's a party!

Who needs gifts when you've got wrapping paper!

Did somebody say cake?

Oh, that's what you meant by cake. No thank you.

Non-eating can be a stressful business.

@#&%$!


Sitting on great-grandpa's lap is a good place to be.


Working on my wave. Sort of half-hearted in this picture.