Visit with Endocrinologist

We met with Dr. Ellen Kim today, a pediatric endocrinologist at Children's Memorial. Stella is so tiny for her age, so I wanted to have an initial consultation mostly for peace of mind. Dr. Kim agreed that Stella's weight and height gains show some cause for concern and ordered some tests.

I learned a lot about the pituitary gland during our meeting. Probably the most interesting thing I learned was that issues with the pituitary can show up into a person's 20s, so at the very least Stella will need yearly screens until then. (People born with bilateral anophthalmia often have problems with their pituitary glands.) The most reassuring thing I learned was that any problem that may arise can successfully be managed with synthetic hormones.

Getting Stella's blood drawn was so traumatic. She is a chubby little thing, so it was nearly impossible for them to find a vein, and when they finally did (it required 2 nurses and me) they couldn't get very much blood. This whole time Stella was crying like she was being tortured, which, I guess in a way, she was. It was horrible. I started crying too. I hope I don't have to go through that again any time soon!

We should get the results by the end of test week. Fingers crossed that things are normal!

9 months

It's hard to believe my baby is 9 months old already! She's still so tiny, and acts more like a 5 month old in many ways, so it's easy for me to forget how old she is. While I do want her to grow and develop and become more mobile, there is a part of me that is enjoying this "extra" baby time.

Stella has one tooth, middle bottom, and more are on the way. She chews on everything, including her own fingers. I think it's funny that she continues to be surprised when it hurts to chomp down on her finger. She is still nursing strong, but also enjoying a variety of foods. I think we're done with the pureed baby food, because she makes a huge mess and doesn't seem to like it that much. She seems to prefers actual chunks of foods. So far she has had puffs, cheerios, carrots, peas, bananas, and teething biscuits. I am so impressed with how well she finds the food on her high chair tray and feeds herself. She doesn't have the pincer grasp down yet, but she grabs the food with one hand and uses fingers from the other hand to scoop the food into her mouth. She helps to hold a sippy cup but hasn't managed on her own yet, but we haven't given her many chances to try.

I think Stella has made great strides in her physical development this month. She is rolling from her tummy to back very easily and consistently. She still prefers to be on her back, although she tolerates tummy time a little better and will actually reach for objects and play with them while on her stomach. She often rolls from her back to her side, usually to find something to play with, but rarely goes all the way to her stomach. I think she is pretty close to sitting by herself. She does very well in the high chair and the exersaucer. Of course she still loves the swing and her little room and really interacts a lot with her surroundings now. She enjoys exploring textures and playing with rattles. Stella has become a lot more verbal this month too. No words yet though. Stella found her feet this month and just loves to play with them. She can also pull her socks off to get at her feet.


Her hair is getting longer and often seems like it might be curly. It definitely has a lot of body. This has been a difficult month for her conformers. The visits were traumatic and we had trouble finding a good fit. The end result is that for 3 weeks she has been wearing one clear conformer and one white conformer. They seem to be doing the job, but I think it looks awful. Next week we will get them changed and hopefully she will look a little better.


Overall I'm happy with the progress Stella is making, although I would love to see her be a bit more mobile. We are starting her on physical therapy to help with that, hopefully next week. Stella is such a sweet, easy baby, and I am having so much fun with her. I'm amazed at how expressive her face can be and at how easy it is to figure out what she needs. I just love watching her grow and learn things. And it's very fun to watch Sebastian find ways to interact with and enjoy her.

Well Visit

Stella saw Dr. Elvove today for her 9 month well visit. Although she's tiny, Elvove says she's healthy and thriving and he thinks we are doing all the right things to help her grow and develop. He suggested I try giving her chunkier foods, and even some cooked peas and carrots. We'll see how that goes.

Stella measured 26 inches and weighed 17 1/2 pounds. That puts her in the 5th percentile for height and around the 30th percentile for weight.

She also got the Hib vaccine today.

Tooth!

Yesterday I felt Stella's first tooth. She pulled my finger into her mouth, chomped down on it, and it hurt! Sure enough, when I looked I saw the sharp little white tooth protruding from her lower gums.

Poor little thing has been cranky all day today, so I know she is teething hard core now. Her gums are swollen and she just can't seem to get comfortable. I have been giving her teething tablets, but she had trouble napping so I gave her tylenol which helped.

OT Evaluation

Today Julie came to evaluate Stella for occupational therapy. Some of the things an OT might work with Stella on are motor skills, self help skills such as feeding, oral motor skills, play skills and sensory processing skills.

The OT was very impressed with Stella's skills and found very little delay. The fact that Stella uses her hands very well, is already self-feeding a bit, and has no sensory issues is wonderful. Julie said it was evident that we have been working with Stella a lot. I give most of the credit to Marla, the TVI, who has taught me pretty much everything I do with Stella.

Julie agreed that for now it is important to focus on Stella's gross motor skills, like rolling and sitting. Yay! Go Stella! It's so nice to hear feedback that Stella is doing some things well, and that we are doing the right things to help her develop and grow.

8 months old

Stella is 8 months old now. She is wearing 6-9 month clothes and I think she must be gaining weight, because she is so chubby! I love her baby fat rolls, especially on her thighs.

Things are moving right along, although slowly, with her physical development. She is making progress with rolling and sitting and seems a lot stronger than she used to be. Sometimes she grabs her feet now if I help direct her hands to them. When I put her in the small room she scoots and rolls all over. Often she scoots right out of the box, and she usually turns herself 90 or 180 degrees from how I put her down. She is great at finding things around her to explore, and usually after she drops an object she can find it.

Feeding is going very well. Stella still breastfeeds mostly, but she gets at least one meal a day of baby food. So far she has had rice cereal, sweet potatoes, peas, carrots, apples, bananas and pears. Also she can feed herself cheerios and gerber puffs. She just loves those things! It's pretty funny to watch her eat them, because her hands are so moist that they just stick to her fingers and she has to shove them into her mouth with her other hand. I'm impressed at how easily she finds them on her tray and gets them into her mouth.


We took the kids to a water park this month at Wisconsin Dells and Stella did very well. She loved being in the water. Her favorite part was sitting at the edge of the wave pool. Each time a wave splashed over her legs she would laugh and coo and kick her legs. It was a struggle keeping the wet suit out of her mouth - she wanted to suck on it. Yuck!

I love watching Stella with her big brother Sebastian (3 years older than her). They are able to interact a little now, and Sebastian loves playing with her. Usually he is appropriately gentle. Stella just loves him. Anytime he comes near or talks to her she lights up. He likes to tickle her, play peek-a-boo with her, bring her toys, and help her roll over. Sometimes he tells her stories, and strokes her and kisses her, which is adorable.

Things have slowed down at the ocularist. We are not changing Stella's conformers quite as often anymore. We are hoping Stella will have a growth spurt soon and we will be able to insert conformers that are quite a bit larger. I am glad that we have settled on a design that seems to work well and doesn't fall out. Stella does have a lot of discharge from a socket, so keeping them clean and preventing them from getting red is a constant chore. I'm pleased with how her face is looking and am happy with the work June is doing. Stella still cries like she is being tortured during every visit, which is not fun for me either.

It seems like the majority of people who meet Stella don't realize she is different. Either that, or they are just very polite. Most people smile, and talk to her, and tell me how adorable she is. Sometimes I wonder if they just aren't very observant. Of course, a comment I hear quite often is along these lines, "Oh what a cute baby. She's sleepy, how sweet." And this is even if she is babbling and moving her arms and legs. One man did ask me if she was Chinese. I just smile and say thank you, because it doesn't seem worth it to explain her condition to every stranger I meet at the store.

Rolling Over

Last night Stella rolled over for the first time. We were at my dad's and I had put Stella down for her tummy time. As I was sitting at the table chatting with my dad & Meg I looked over just in time to see Stella roll onto her back. A few moments later I put her on her tummy again and she immediately rolled onto her back. Yay! Progress finally. I wonder if we will ever get her to play on her tummy again...