After several weeks of struggling against nausea we finally found a solution…
Julie is on a new prescription that has resolved a lot of her throwing up, coughing and gagging issues. She is becoming more mobile and spends most of the day playing.
After waiting for a very long time, we finally got Julie to see a real GI (gastrointestinal) doctor. We had heard a lot about this guy and so our expectations were high. As the nurse showed us to the examining room, she told us that this was his last week at the hospital. We hadn’t met the guy and he was leaving? For a GI doctor, the man has a lot of gall.
Well, he asked lots of questions and listened intensely to all of Julie’s woes. He recommended a new prescription and said to see him in two months. We found out his new practice location and Sarah will be setting up a follow-up visit soon. I asked about Julie’s button and the GI doctor agreed with me that she was due for a new, larger one. He ordered it for us and I replaced it myself a couple days later. It was a quick procedure and Julie didn’t even know anything had changed.
We also have several spare extension tubes that connect the pump (and syringes) to the button. These tubes are fairly easy to maintain, but once they get dirty, they get stiff and they are impossible to clean. Flexible is comfortable and stiff is painful for Julie, so having spares on hand and the ability to order new ones as needed is a relief.
The new prescription has been nothing short of amazing! The ongoing vomiting is gone. Julie hardly ever gags or coughs anymore. She is happier than she ever has been, to say nothing of her Mom and Dad! I removed the incline on the crib since Julie has been more mobile and is just as likely to be facing downhill as uphill. We are still going with 5 feedings a day for 30 minutes each. The GI doctor believes her problems are related to the limited size of her stomach so we are to keep her meals small. The new medicine stretches the stomach and reduces saliva, so she isn’t faced with swallowing as much spit as before. The medicine can make her more anxious, but normally it will make her sleepy so I give it to her along with her Prevacid before we put her down for the night.
Julie’s new PT is also making amazing strides. He warned us that he isn’t afraid to make Julie cry. He is pushing Julie with different positions and exercises. Then he teaches Sarah what she needs to do for the rest of the week. Julie’s response has been wonderful. She started her second year as a blob of jelly that could roll from side to side, to rolling completely over on her stomach, to sitting up on her own to almost crawling.
Julie now spends several hours a day peacefully playing with her toys in a sitting position. She is getting more mobile everyday using a combination of stretches, laying down, rolling over and sitting up to move from one toy to the other. She caught me a couple weeks ago by falling from the bed to the floor in a perfect 3-point landing. She didn’t even notice she fell until she saw my face turn white as I realized what happened. But I kept it together and she never cried. Last weekend, it was Sarah’s turn. It was a little more traumatic (for Mom rather than daughter), but everyone survived with only a few tear stains.
We immediately reconfigured the floors of the crib and playpen to the lower position. And we don’t leave her on the bed anymore. I had been placing large pillows on the bed after my little incident, but she is progressing so fast that I don’t think it will deter her for very much longer. The PT thinks she will be crawling in a week or two.
Since Julie is feeling so much better, she is enjoying physical movement more. She now laughs when we hold her in the air at different angles or bounce her around. She is putting things in her mouth after a brief visual inspection to make sure it’s not food. She is probably teething again. She has four upper teeth and lots of bottom teeth to show for her pain so far.
Her feeding therapy is still going slow. Her therapist wanted us to let her just sit and play with her food. We invited some friends over two weeks ago for a belated one year birthday party. We gave Julie a cupcake and let her have at it. After about an hour there were only crumbs and an empty paper cup and icing all over her face and hair. She was a mess, but she was delighted. I think she might have even swallowed a little, too.
We started bringing Julie to church now that flu season is over. Julie is doing very well, but Sarah got sick last weekend and I missed 2 ½ days at work this week. I’m still fighting off the last effects even today. Julie enjoys the people and the music. She talks back to the preacher a little, too. So, she has the church thing down pretty good.
The other thing that continues to change is Julie’s hair. She came home from the NICU with a severe bald spot on the back of her head and some chronic cradle cap (dry scabs in the scalp). Now that she is more mobile, her hair is filling in and getting longer. She has natural curls with blonde highlights. I’ve included a favorite picture of Sarah’s from last August to show the difference.
In other news, we are moving from our current apartment to a townhouse on the other side of Plano in May. We will be saving rent money and getting a larger unit. It’s a two-story floor plan with a beautiful fenced-in backyard (maintained for us) and a private courtyard in the middle. And, most importantly, it has a jetted tub for momma. We traded a garage for carports, but our parking is immediately in front of the unit and we have tons of storage space. We have to provide our own refrigerator, but a generous gift from Sarah’s parents will pretty much cover that.
The new place is a little closer to work and much closer to school for me. We will be able to keep all of our doctors and therapists. The only problem is that church is a little further away. We’ll send out new contact information later.
After one year as parents, we’re still having a hard time getting used to this whole diaper routine. Julie has had several exploding diapers recently: in the crib over night, while having her wet diaper changed, moments before her bath when Sarah was holding her (not technically an exploding diaper since she wasn’t wearing one). Both Sarah and I have been up to our elbows in ick with a squirming baby intensely curious about what just happened down south. But the worst so far was when Julie dumped a load while at the GI doctor. Her diaper was loose because the GI doctor had taken a couple looks into the nether regions but hadn’t gotten the strips in place properly. Julie was trying to show off for the doctor so she overfilled her sagging diaper and Sarah caught it on her pants. It took a while to clean Sarah, Julie and the examining room, but at least the GI doctor confirmed that the color and consistency was healthy.
Andy, Sarah and Julie Horn
Our new GI doctor proved to be worth the wait. He helped Julie in just one visit.
Her new PT also made remarkable progress. Julie had already exceeded his expectations. We could see steady improvement every week.
Our current apartment had a jetted tub, but when the tub began to leak, the apartment complex replaced it with one that didn’t have the jets. Sarah has been looking to move out every since, ha!