NICU Follow-up

This morning Giuliana had her, what we now know is the first of many, NICU Follow-up. We didn't know what to expect, but when I checked in we discovered this is a 2-3 hour appointment. First they performed a hearing test on her. This is a different hearing test from the newborn hearing test (which she passed). They put a probe in each ear which sent a tone to her inner ear. When the inner ear receives the tone it vibrates sending a message back to the machine that she heard the tone. Giuliana passed in both ears.

After approximately 15 minutes of waiting, we were seen by a Speech Therapist. Since Giuliana is so young, plus we have a Speech Therapist come to the house through EI, there wasn't much done at this appointment. After a long wait, we then saw an Occupational Therapist. She was very friendly and came to check Giuliana's movements. The Occupational Therapist was pleasantly surprised with Giuliana's level. Giuliana scored in the 75-90th percentile on this test. She called Giuliana a Rockstar! You'll see in the video below, Giuliana is sooooooo close to crawling, which puts her way ahead of where she's supposed to be. Most babies start to crawl around 8-9 months. While Giuliana is advanced for her age in milestones, we do need to work on some excercises at home. She tends to be a little stiff at times, so we just need to do a few excercises throughout the day to keep her loose and "chill."

Then after another long wait, we saw a Fellow. I'm not really sure exactly what a Fellow is, so I'm going to have to do some research on that one. I think he is a doctor because he mentioned that he was a Pediatrician before he became a Fellow. He pretty much talked to us to see where we are with things, address any of our concerns, and then did a brief examination of Giuliana. He then reported to his supervisor, and she came in to recap everything for us and examine Giuliana herself. So, we were there the 3 hours and this doctor told us we will be back every 4 months until she is 14 months, then at 2 years, and 3 years. I'm not sure if there are any visits between the 2 and 3 years because by this point both Giuliana and Giovanna were screaming their heads off, so it was difficult to hear. I figured between Joe and I, we'd caught the entire conversation. When we got back to the car, I asked Joe if he caught the whole how many times we come back conversation, and he missed it just like I did! Oh well, we have our next appointment scheduled (which we need a referral for!!!) so we're good for now and know we have many more visits to come.

Yesterday we took the kids to Magic Waters. Giuliana loved the Lazy River, Giovanna did not. The part where water squirts out at you, Giovanna would scream her head off all the way through. Then she'd look at Giuliana and say, "baby wet," and see she wasn't crying and then she'd stop crying. That is until we got close to the next section of water squirting! She really enjoyed the kiddie area though. Giovanna even made a friend at the end. Gunnar had a blast on the waterslides. We had a really fun family day.

On Monday night, Giuliana started these phenominal moves! This morning she even got up on her knees! She is on her way to crawling. I can't help but be excited at her accomplishment, but at the same time mommy sad that she's growing up so fast before my eyes.

Giuliana attempting to crawl

4 Month Check-up

This week Giuliana had her 4 month pediatrician visit. She is weighing in at 14lbs 2.4 oz and 23 1/2" long. Just when I start to forget that she is a special needs baby, it all comes crashing back. At this appointment, Giuliana's doctor noticed that her right leg is about a half of a centimeter longer than her left leg. Hemihypertrophy/Hemihyperplasia (people just say Hemi) is a characteristic of Beckwith-Wiedemann Syndrome. This is where one side of the body, or one part of the body is enlarged. It can be in length and/or girth. Her doctor didn't exactly call it Hemi, but the more I look at her legs, the more I see the difference. If you'd like to learn more about Hemi, someone on my BWS group emailed a link http://www.hemisupport.com/. The doctor said we'll just watch it for now. We are also in the process of getting a referral for Giuliana's sleep study, as well as a swallow study.

Giuliana being cute with her 80's Rocker hair

Giuliana will now join us at the dinner table. Even though

she is not eating solids yet, we decided to have her get used

to sitting in the highchair, and to include her with mealtimes.

Giovanna has been upgraded to a seat at the dinner table!

Tonight was her first meal sitting in her "Big Girl" chair, and

she did really well. The mess was minimal too!

Now That's Commitment!

While eating dinner tonight, I can't believe I got the camera fast enough for this one! It took all my energy to not laugh in order to keep the camera still. She must have had a hard day of playing today. The video speaks for itself!

Giovanna eating dinner

Nevus Sebaceous

This was an extremely busy weekend for the Lees. Giuliana had an appointment with the dermatologist on Saturday. She was born with a tiny bald spot on the right side of her head. The dermatologist confirmed it is a Nevus Sebaceous. It is a tiny round spot that is slightly raised and sounds like it is an overgrowth of sebaceous glands. He said it is nothing for us to worry about right now, but when she is around 8-10 years old, she will have to have it removed because it can become cancerous. Again the dreaded CANCER word. That is always hard to hear and I think the doctor sensed our fear and reassured us that it should be ok for now. The area should grow proportionately as she grows. We are to keep an eye on it and contact him if we see any changes, otherwise come back in 8 years. With a new referral of course. Anyone else have to deal with referrals? Did you catch my attempt to be funny?

Gunnar also had a playoff game. His baseball team is in 1st place. This is the first time he is on a winning team! They played the 8th place team and won 17-0.

Giuliana's Speech Therapist also came for the first time. She is really nice and said that Joe and I are doing exactly what we are supposed to be doing to ensure Giuliana is developing on target. She gave us some exercises to do with Giuliana to strengthen her lips and make her aware of her cheeks, lips, and tongue.

We were at a picnic on Sunday, and it was really cute, Gunnar

and Giovanna were playing cornhole together. It was soooooo

hot. The poor girls were a hot mess!

Despite the torturing weather, Giuliana was able to keep

smiling! I love when she smiles. She smiles with her entire face!

Gunnar's new thing is building a house of cards. He took

a picture of the most cards he has ever stacked in the

one day that he started building! We are proud of his masterpiece.

Giovanna climbing into and getting stuck in the jumperoo.

July 5th Test Results Update

Hopefully the days of taking tests that require weeks or months of waiting for results are over, and we are now at a stage where all of Giuliana's test results will come back as quickly as they did this week! On Monday Giuliana had her first abdominal ultrasound. The ultrasound was interperted by a radiologist the findings passed on to her pediatrician. We got a phone call this week, and we are happy to report that everything in the ultrasound looks normal thus far. They had trouble seeing her pancreas because she was moving so much during the scan, but they are not concerned. She also had her blood drawn for another AFP test, and her AFP level dropped to 43. That's a good thing! We want her AFP levels to continue to go down. When they increase, that's when there is concern for cancer.

Giuliana is now at the age that Giovanna was when we setup her jumperoo. So we decided to pull it out and see how things go. Ya. . .she mostly just licks the seat. It brought back fond memories for Giovanna. In one of the videos below, she seems to be more excited for Giuliana than Giuliana is. We have also caught Giovanna several times climbing into the jumperoo. We mostly catch her because she screams, "mommy (or daddy) I stuck" and sure enough we come in to the room and she's all jammed in there with one leg hanging out, stuck. I'll have to try to get a picture next time. That just seems cruel to take her picture when she's in need of help, but you have to see, it's hilarious!

Giovanna had her swim class today, and today I decided it was time for her to go under. She does so well putting her face in the water to blow bubbles, and the teachers always ask if she goes under. So, today when we were in the pool singing "Ring Around the Rosie," when we got to the part where you say, "we all fall down" down Giovanna went. I was pleasantly surprised, she did not cry one bit, nor was she afraid. She did not cling to me. She was a bit shocked, but just wiped her face and continued on with the songs.

Giuliana in the jumperoo

The girls playing with the jumperoo

Giovanna has been practicing counting to 10.

She also loves to sing Twinkle Twinkle Little Star,

and her ABC's

4th of July Weekend

We had a wonderful 4th of July weekend! We started the weekend off on Friday night by having Lou Malnati's pizza at Laura's apartment. Auntie Loda and Grandma took all the kids to the park. Giuliana went on the swings for the first time and loved it. Gunnar had a blast watching the kids playing hockey in the tennis courts (he told me he decided that instead of buying a blackhawks jersey, that he wants to buy rollerblades!), and Giovanna as usual went down the slides!

Then on Saturday we went to Isabella's 2nd birthday party. She looked so cute in all of her wardrobe changes! Giovanna had a great time swimming in Isabella's pool and playing with all the kids. In the evening, Gunnar, Giovanna, Giuliana and I walked down Gunnison to see the fireworks at the golf course in Harwood Heights. They really do a nice display. It was so cute, every time a bus drove by Giovanna would say, "bye bye daddy." It amazes me that she recognizes a bus and knows that that's her daddy's job.

Unfortunately, Joe had to work on the 4th. The girls and I went to my parents' house for the day. Giovanna spent practically the entire day in the pool, so I don't have any pictures of her in the cute 4th of July dress Joe bought her. On the drive home, I took the main roads instead of the tollway so we could see the fireworks as we drove through the different towns. Giovanna loved it and practically the entire ride home was saying, "Mommy! Fire! I see em!" Joe got home from work shortly after we got home. I put Giuliana to bed, then pulled out a blanket, and Joe, Giovanna and I sat out on the front lawn watching the fireworks going off in our neighborhood. It's a memory I will always have. I can't wait for next year when Giuliana is old enough to enjoy these moments too.

Auntie Loda and Giuliana

Giuliana swimming for the first time

Giuliana in her bathing suit

Giuliana and Grandma

Giovanna squirting Grandma with the hose

Grandma was squirting Giovanna with the hose

Giovanna was "reading" me the joke on her popsicle stick