Funny Things Jilly Says

Jillian says some pretty funny things. Here are a few I remember.

She calls Darth Vader-Darth Mater (I think she's confusing Mater from Cars with the Star Wars character).

When something is pretty it is gutiful (gorgeous/beautiful) or cuteable (cute/adorable).

When I try to get Chloe to say "Mama" or "Dada" Jilly chimes in and says, "Say Jillian!"

When she tries to spell Chloe's name it goes like this, "E...L...O...P...H...I." When she spells her name it goes like this, "H...I...L...P...H...I." The letters aren't always in this order but there is always a p and an h in anything she spells.

She's always saying something funny. I usually forget before I write it down.

Chloe is 9 months!

I took Chloe into the doctor for her 9 month well check on Tuesday. Here are her stats:

25.55 inches which is in the 3rd percentile for length

16 lbs 2.5 oz which is in the 8th percentile for weight

42.5 cm which is in the 11th percentile for head circumference

Don't let those small percentiles fool you. Chloe is doing fabulous. I think you'll remember that she was very small at her last check-up (hm...I just looked and I never posted her stats and I'm too lazy to go look them up but trust me she was small. Less than 0 percentile for weight and I think 3rd percentile for height).

Chloe has gained 4+lbs in just 8 weeks. That is amazing! The doctor was really pleased with her progress. She's going to continue on the feeding tube and we will continue to go in for weekly weigh-ins.

Sean and I were commenting on how small Chloe's head looks compared to her body but apparently we are crazy because her head is the biggest part of her proportionally! I think it's because she's wearing the helmet all the time and when we take it off her head looks small without it! The orthotic specialist adjusted her helmet this week as well and she's gained 15mm in head circumference in just 6 weeks. Apparently that is a huge amount of growth in a short period. Her head is rounding out nicely, there are still some spots we want to fill out so we continue on with helmet wearing.

I also had the doctor test Jillian for celiac disease while we were there. Her results came back normal however, Sean's GI doc told us that kids come back with false negative results a lot. We are doing a mostly gluten-free diet for me, Chloe, and Jillian (and a completely gluten-free diet for Sean) so I wanted to get her tested before we cut gluten from our diet. We are supposed to get Chloe retested at her birthday and then both girls every three years if results continue to come back negative.

Paging Dr. Jillian

This has been Jillian's favorite game ever since she got her blood drawn on Tuesday.

Cow

August

I am a bad blogger this month! On a related note, where did this month go? Anyway, here is what we have been up to the last little bit.

Chloe is still on the feeding tube every night. The first time they delivered her formula I had to laugh because it was all boxed up with paper work and had a pharmacy label on it. At least insurance will pay for it since it is medically necessary!

Very official looking formula! I especially love the line at the bottom that says that this drug is intended for the patient only.

The other day I let Chloe play with the wipes box while I ran to throw a diaper away. She usually likes to drum on the top with her hands. I had no idea she knew how to open the box and pull out the wipes! So I did what any good mother does, grab the camera, of course!Jillian's new thing is to ask me to tie her blanket around her and she walks around the house pretending she's getting married. She's even dug out some silk flowers for her bouquet. I asked her who she was marrying and she has a variety of answers but the most common is that she's marrying her Aunt Tami. I did tell her that Tami is already married to Uncle Eric. So then she says she's going to get married like Tami. I told Jilly that this would work much better!Another exciting thing for Jillian is she's finally moved into a big girl bed! We moved both girls into her room and it's worked out pretty well so far. Nap time has been interesting because I can't get them to nap at the same time or for the same amount of time so someone is always waking the other up but night time is going well!Jilly on her new bed. She was so excited for Tinkerbell bedding.

And just in case you wondered: These two just adore each other!

Helmet

Last week Sean and I took Chloe in to get fitted for her helmet. I was ready for the messy process of casting. Much to my surprise the place we went to uses this fancy machine: They just put her in the machine, Sean held her there, and in about 30 seconds scanned her head to make a 3-D model. They trimmed up her image on the computer so that her feeding tube (which she was wearing while she was scanned) and her hair were not skewing the results and sent it off to Florida where they make the helmets. Then 10 days later we went back in to pick up the helmet. Oh, and we got to pick a cute pattern for the helmet which I was excited about.

Chloe trying it out for the first time.

She doesn't mind the helmet too much but we're still working our way to wearing it all day and night. In a couple days we'll be up to wearing it 23 hours a day.

She is so cute! Also, Chloe has gained one pound in a week! We are excited that the night feeds are working. She is looking a little pudgy these days and is getting heavy to carry around. That's what we like! She is up to 14 lbs 3 oz and is 25 inches long.

Long post about Chloe

This post is long overdue but we've been a little preoccupied with other things, but I'll get to that later.

I took Chloe to Primary Children's Medical Center on Thursday to be admitted so they could try to figure out why she wasn't gaining weight. Since her pediatrician called the night before all we had to do is say we were there and I walked up to her room (which coincidentally was one room over from where she was in March when she had RSV) and away they went with all the tests and measurements. Easiest hospital admission I've ever done! As you can see below we had a fun time trying to keep Chloe tangle-free with her many cords. She rolled this way and that and we finally had to pad the sides of the crib because she kept bonking her head on the rails.

Chloe had lots of toys to play with while we were there. And the doctors, nurses, and med students loved her so she had lots of admirers. We did a lot of tests, none too invasive and the craziest one we even documented with pictures.

Chloe had a chloride sweat test to test for cystic fibrosis which I knew she didn't have (she doesn't have any symptoms) but the doctors wanted to check to make sure so we humored them. For this test, they hooked her up to a machine to stimulate her sweat glands and then collected her sweat to test the chloride levels in it. Kinda funny really. The nurse running the test told us they've been doing this particular test this way for a long time (like decades).

This is her hooked up to the machine stimulating her glands.

Another view of the same:

The machine she was hooked up too. Looks scary. Sean was joking that we were going to shock her.

This is after the gland stimulation. They wrapped a little square piece of gauze around her arm in plastic...

...and then wrapped it with a second piece of plastic...

...and then it got wrapped with some cute bumblebee coban and then hot packed. Then she got wrapped in about 5 blankets and the thermostat got turned up to 80 and she had to stay like that for 30 minutes. This was all on a 95 degree day. I told them they should have just taken her outside!

Anyway, it turns out that all we found out is that Chloe isn't getting enough calories during the day (which we already knew...) so they decided to put a feeding tube in at night and she'll be getting a third of her daily calories in her sleep.

I still think she's super cute, even with a tube coming out of her nose.

Playing with some fun toys. She had a great time at the hospital this time. Lots of toys and attention, she was set!

I caught her sleeping on all these cords. I have no idea how she found this comfy but she did!

I learned how to put the tube in and just as they were discharging us I started feeling nauseated. I tried to hold it together but lucky me, I somehow caught the stomach flu at the hospital. So after throwing up a few times, I packed up my kiddo and hauled us home so I could be sick in the comfort of my own home. That night a home health nurse came and taught me how us the feeding pump at home and she told my doctor that I was amazing (glad I could impress even when I could barely function in between bouts of being sick). So we put the tube in every night before bed and let her eat in her sleep. She did gain about a half a pound while we were in the hospital and her pediatrician was thrilled about that. We have lots of follow up appointments from now until the end of the year but I'm glad that she's making some progress.

Chloe also got fitted for her helmet on Monday and I was set to take lots of pictures of the casting process but the place we went was so high tech they just put the kid's head in a machine and 30 seconds (or less) later they had a 3-D scan of her head. No mess, no fuss. My kind of appointment! They'll have to scan her head a few more times throughout the reshaping process so next time I'll be more prepared and take a picture!

Oh, and Jillian got the stomach bug that I brought home and finally stopped throwing up this afternoon so that's my excuse for not getting this post up sooner. She kept running around and this would cause her to be sick but she wouldn't just lie down and rest, and she kept begging for food. Two-year-olds!

I think I need a vacation.