November 15, 2010

Charlotte has made significant steps with her feeding. This progress correlates with a decrease in vomiting. Over the past week she has basically stopped throwing up, except for first thing in the morning when she wakes up and even then it's less than we've seen in the past.

This afternoon I met with the representative from Early On and Charlotte's teachers from Little Huskies. Early On reminded me of something I'd nearly forgotten: when we started with the practice feeds back in January we would simply touch a dry spoon to Charlotte's cheeks and lips. Now she takes water like a champ! Little Huskies has had amazing success feeding Charlotte, in large part because Charlotte is a social butterfly and loves doing what the other kids are doing. Last week they took a video of her feeding practice and we're posting it now because we just got permission from the parents of the other kids in the video. They're pretty fun to watch.



During this afternoon's meeting we developed goals for Charlotte. Over the coming months and within a year we want her to:
Walk independently
Start babbling more consonants than the "la" and "da" we hear regularly now
By next November develop a vocabulary of 10-20 words
Eat a cracker (within 3 months)

I'll definitely talk with the specialists in Milwaukee about these goals, but it was fun to set them. During the meeting I was reminded about how lucky we are to have Charlotte at Little Huskies. Not only has the social aspect been great for her development and happiness, the staff are phenomenal.

November 14, 2010

Last year this time we were adjusting to having a baby at home, and believe it or not an entire year has passed. Charlotte came home from the hospital on November 11, 2009 and while some parents remember taking their baby home from the hospital as a time of anxiety/nervousness, we recall a sense of liberation and joy. The pictures on this post were taken the morning of November 11 shortly after she woke up.

She had her 15 month pediatric appointment on 11/11 and everything went fine.
Height: 28.5"; 7th percentile
Weight: 19.95 lbs; 10th percentile
Head: 45 cm; 25th percentile


About a week ago Charlotte had a developmental follow-up with Early On, Michigan's birth to three program. They didn't have any concerns outside of her not eating. We go around and around with this conversation, but they want her to see a speech therapist in the UP. We are fine with this and would love her to have some additional help, but we also insist they communicate with her therapist in Milwaukee to ensure some consistency. We'll be seeing Early On again tomorrow, so I'll see if they followed up with Dr. Arvedson.

Last weekend was a trying one for Patrick and Charlotte. I traveled to a conference in St Louis Saturday through Tuesday. Late Saturday night Charlotte started throwing up bile and stomach juices constantly - every 10 minutes all night long. Finally about 5 a.m. Patrick turned off her feed and she settled for a few hours, allowing him to get a couple hours of sleep. Of course he woke up to happy playing sounds coming from the crib only to find Charlotte thoroughly enjoying playing in her own diarrhea and throw-up.

Later that morning Patrick took her to the ER at Portage Health since the throwing up had resumed with her feeds and her cheeks had broken out in a rash. She was diagnosed with Fifth Disease, also called "Slap-cheeked Syndrome". There wasn't much treatment besides letting her rest and trying to get her fluids through her tube. Charlotte started to recover slowly throughout the day on Monday, but about mid-morning Patrick started to feel the effects of a stomach bug coming on. While Charlotte was at daycare he spent the afternoon sleeping and throwing up. Luckily Charlotte was starting to feel better and slept most of the night, although she still couldn't be fed on her regular schedule.

And just so I didn't feel left out I managed to spend Sunday night sick as well and had a relapse later in the week after I got back. Hopefully we're done with the "sick" thing for a little while. Of course, with Charlotte in daycare it shouldn't be too long until we all get the illness-du-jour.

The weekend has been great. Pat's sister, Kelly, visited from Minneapolis and we hope she enjoyed her visit because we sure did.

Tomorrow we're back to work for a three-day week until we head off to Milwaukee on Thursday. Thursday evening Patrick will fly to Maryland for the JFK 50 miler - his first time away from Charlotte since she came home (a well-deserved break). Charlotte and I will have a busy weekend with 2 appointments on Friday and then a trip to see Grandma and Grandpa Distad in Minnesota.

November 2, 2010

We had a great weekend in Eau Claire celebrating Pat's mom's retirement and birthday! Charlotte loved seeing family and playing with them. Charlotte even dressed up for Halloween (against her wishes) as Tinker Bell. It took her a few minutes to adjust to her costume, but she eventually stopped trying to pull it off.


There is a possibility that Charlotte uttered her first word tonight! When Patrick came into the room she pointed at him and said "da da". Now, she babbles pretty regularly and da da da da da is one of her favorites, but this time just seemed different. We'll see if she does it again!

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.