Wednesday, April 21, 2010

Doctor appointment recap. Times two.

On Monday, Alexis had her one-year wellness check-up with the pediatrician. She weighed in at 18 lbs even and is in the 10th percentile for weight. She's in the 35th percentile for height. And that's on the "typical" growth chart, not the d/s chart. Dr. Miller was very happy with how she is growing and it's time to transition her to whole milk. She's had some small amounts of it already without any problems, so hopefully it will be an easy transition. We talked for a while about how Alexis was developing, (she even gave me some sample eye drops to use on Nicholas for his allergy eyes, which have been much better this week) and 2 immunizations later, we were on our way home.

Today we had our first appointment at the Down syndrome clinic. We have seen the geneticist before, but this time was the actual clinic. I'm still trying to figure it all out, but it's one of the few days in the month where Alexis can go and be seen by all the specialties at one time, under one roof. I had been told to expect it to take 3 hours. They weren't kidding.

Now that we've done it once, I'll be better prepared for next time.

Alexis and I walked in right on time and entered a waiting room full of kids with Down syndrome. I'll admit, it felt a little strange. All these people who "get it". They've been where we are. I would smile at a toddler escaping her mom's grasp and try not to compare her to Alexis. She's 15 months old and walking. Wonder if Alexis will be doing that by then... An older boy getting mad at his mom when he had to stop playing the video games. Hope we don't have any significant behavior issues... Another child trying to communicate to his father, which I wasn't able to understand. I pray Alexis can communicate with ease... And this was all just 5 minutes in. We hadn't even been called back yet. 2 other observations: everyone with a younger child had brought their strollers. I had carried in Alexis, her carrier, and the diaper bag. Hmmmmm. And that mom over there has a suitcase. She opened it. It was full of snacks, toys, and activities. In the words of Jason, this wasn't her first rodeo.

The nurse weighed her and measured her. Nothing exciting. We were first seen by a speech therapist. With Alexis still so young, the best way to assess her is just by asking me questions. The questions were really hard to answer, like, "Does she respond to her name?" Well, I think so, but I can't be sure that she isn't just responding to our voice. She spent about 5 minutes asking a bunch of questions and then came to the conclusion that she was at a 6-9 month level for communicating and comprehension. But the way she was assessed, I'm not putting a lot of stock into this right now.

Dr. Escobar came in next and oooohed and ahhhhed over her as he always does. He was very impressed by the rate of her weight gain, but also wanted to slow it down. He charted her weight on the d/s growth chart and if it continues to progress at this rate, she could eventually be off the chart in the other direction. I asked what I could do to slow it down. No more candy bars or fried chicken for Alexis. Then I reminded Dr. E. that she's on 24 calorie formula, so we are to just make the regular formula while we transition to whole milk.

After we saw the doctor, the nurse told us to follow her to the pediatric audiology office. So I walked, lugging 18 pound Alexis, her one-ton carrier, and the brick-filled diaper bag. So this is why everyone had strollers! When we got to the waiting room of the audiology department, I recognized familiar faces from the waiting room of the clinic. Alexis had a hearing test about 3 months ago. She did a lot better this time, not that her hearing is improved, but developmentally she knows to look for the sounds she hears. They had us sit in a soundproof booth and Alexis would turn to hear where all the sounds were coming from. They also put little things in her ears to measure something or other in some other way. The audiologist was pleased. There was only one high-pitched sound that she wouldn't respond to. We could have requested to see the ENT, but the audiologist didn't feel it was necessary, so I passed. When we left audiology, more kids from the d/s clinic were waiting for their hearing screens. I'd recognized these people from 2 hours before and they were already calling Alexis by name. "Hi Alexis! How did it go, pretty girl?" It's an incredible community to be in.

Last stop: blood work. I get chills when I hear they are testing her for leukemia (among other things). Not that they think she has it, but it's something they always have to be on the lookout for. And this time I had to haul Alexis (who must have just put on 15 lbs with that last bottle I gave her) and the 2-ton carrier and the lead diaper bag back to the elevator, down to the second floor, through the tunnel, around the corner, through another tunnel, past outpatient, into the children's hospital...I need a chiropractor! And there were more of the kids from the clinic waiting there for their blood work. Hey guys! When the receptionist directed us to the lab, the ladies who were working there saw us coming and groaned out loud.

Groaned! Seriously!

Uhhh, are you not happy to see us? The receptionist tried to smooth things over quickly. "They just always feel so bad when they have to draw blood from babies." Hmmmph. And actually they ended up being very nice, and got blood on the first try--not an easy feat with my baby who often gets called a "tough stick". Of course, the blood stopped flowing and they had to insert another needle. Good thing that they were good at their jobs and nice in the end, since they were off to a very unprofessional start.

Alexis screamed, wore herself out, and was out cold in her carrier before we got out of reception. So I hauled her back through the maze of corridors and headed home. We go back in 6 months. I'll have the stroller with me next time.

Tuesday, April 13, 2010

Happy Heart

Alexis had her follow-up appointment with the cardiologist yesterday. As much as Alexis loves to roll over and wiggle and dance, I was a bit curious as to how she would do, sitting still on the table while the doctor looked at her heart.

I was also nervous. Nervous that they might find...something. Right after she was born they thought the heart defects were really small and the VSD wasn't. So I always wonder if there could be something there that they missed before. And even after the surgery was complete, they told me that there was still a small hole. They were hoping it would clear itself up, but it's a hole nonetheless.

So we drove down to St. Vincent for a 2 p.m. appointment. All the preliminary things were fine: weight, oxygen levels, etc. Dr. Kumar came in and was pleased with how great she looked, how she isn't on any meds, is eating well. Dr. Kumar is a very kind, very soft-spoken man. And Alexis seemed very intrigued. She just stared at him as though she recognized him, but couldn't quite place where she knew him from.

When Dr. Kumar took us to the other room for the ultrasound and I laid her on the table, I waited for Lexi to start squirming, especially when the doctor put on the gel and started the scan. But Alexis lay there, motionless, just staring at him as though he was telling her the most riveting story she'd ever heard. She would occasionally glance over at me and then look back at him. And Dr. Kumar never said a word.

Until we were finished. He said that her heart looked great. There was no longer a hole there (he said the hole might have been a space between two stitches) and he had no concerns. And then he told us the best news ever:

"We don't need to see Alexis anymore."

What???? Seriously????

"We would only need to see her if there was a concern."

And I think that if there was any kind of "concern" I would just go to the pediatrician and they could send us to the cardiologist if necessary.

So that's it. Cross another doctor off the list. Thank you Dr. Kumar. Thank you to the heart surgeon Dr. Abraham.

Thank you. With all our heart.

Wednesday, April 7, 2010

1 Year

Happy Birthday to Alexis. What a year! Here it is, by the numbers:

365 days

153 blog entries

73 days in the hospital

21 doctors (8+ neonatologists, 5 obgyns, 2 surgeons, 2 cardiologists, 1 infectious disease specialist, 1 geneticist, and 2 pediatricians)

9 therapists (3 occupational, 2 physical, and 2 speech)

2 ventilators

2 blood transfusions

4 RSV shots

1 PICC line

too many IV's

2 Easters

1 family vacation

and 1 extra chromosome.

And with all that came countless amounts of

incredible nurses,











and blessings.

Happy birthday Alexis.

Alexis's first year at

Monday, April 5, 2010

Happy Easter!

Since Lexi was born before Easter Sunday last year, but her birthday is after Easter Sunday this year, Jason and I got to wondering when she would have her birthday actually fall on Easter...

As we started wondering this, images of adorable Easter themed birthday parties floated into my mind...pastel candies, bunny cakes, and lots of chocalate...

So Jason Googled it. What did we do before Google?

So you are all invited to her birthday the next time it falls on Easter 2075.

Friday, April 2, 2010

Week in Review

It's been a busy few days. The 4 grandparents were all here on Tuesday to go to Kindergarten for Grandparent's Day. Nicholas loved it!
Tuesday night I met my dear friend Julie for dinner and a much needed girls night. The boys had their final swimming lesson on Wednesday. Nicholas was excited to be moved up to group 3 (Blake was already there) and they both finished the lesson with 3 jumps off the diving board. I was much more panicked than they were. They didn't even hesitate. They're getting so much older and braver and independent. I'm not ready for this!
Thursday morning I went to the salon. I haven't been for 11 months. (I remember, because Alexis was in the hospital at the time.) I have easy, boring, ponytail hair because as much as I love getting my hair done, I'm cheap and lazy. But it's time to grow up and put forth a little effort. Plus, I'm tired of Alexis yanking on my hair and I'm tired of my carpets looking like a giant hairball. So I chopped it all off. Okay, maybe not all off. I didn't go all Britney Spears on you or anything. But I lopped off a good 8 inches. I mailed off my 8 inch ponytail to an organization called Children with Hairloss which helps kids in all kinds of situations, everything from burns to cancer (plus, they only required an 8-inch ponytail, not 10 inches like Locks of Love). I'm still adjusting to the new do, but it sure is lighter.

Nicholas started the baseball season with his first practice on Thursday night. He didn't play last summer since Alexis was in the hospital. 2 summers ago, Nick played t-ball and what a difference 2 years make. 2 years ago, he wouldn't walk out onto the field without me, we had to beg him to go up to bat, and there were a lot of tears and apprehension. There was none of that this time. It helps that his friend Max is on the team as well. I love that he still has the need to look over at me about every 3 minutes and wave, but I was able to sit on the sidelines with Blake and Alexis (Blake didn't want to play baseball, only pirates) and watch my favorite 6 year old be a part of a team. *sigh*

This afternoon we went out for the first family boat ride of the season. Alexis enjoyed it, Blake slept through most of it, Nicholas and I huddled under a blanket together (it was cool in the shade and in the wind) and had a nice time...until we were walking back to the house. At our house, we don't have much of a backyard. It's more like a bunch of trees, a ravine, and a muddy path leading to some stairs that take you down to the boat. Blake started running on the path back to the house, ignoring my shouts of, "don't run!" and face-planted. In the mud. He wasn't hurt, just scared. And filthy. Luckily, he had on his pirate patch which may have prevented him from an eye full of mud.

And finally, tonight, we went down the street to Aunt Paula and Uncle Ron's house for a cookout birthday celebration for Alexis. Cousin Heather was there as well and they surprised Alexis with a cake, balloons, and gifts. The boys were happy to help Alexis by opening her gifts for her (they were hoping she'd be getting Transformers and Pirates, but I was thrilled with all the cute clothes! Alexis was more impressed by the tissue paper.)

Tomorrow I'll be cleaning mud off shoes, off carpet, off clothes, off sinks and showers.