Chapter 6

Chapter 6: Rose turns One

Rose at 10 months and 20 days January 15, 2000
	Rose is doing great. She had a weigh in on Tuesday (1/11/00). The big news is she’s put on almost a pound. She now weighs 16 lbs 7 oz and is 27 ½" tall. Rose hadn’t gained any weight at her last check up so we were a little concerned but now she’s back on track. She’s at 75 percentile for height and 50 percentile for weight (for babies with DS). She’s got kind of a lanky but pudgy build. Rose is very expressive. She’s quite the talker (OK, noise maker) But she thinks she’s talking. She can string sounds together for amazing long conversations, back and forth for maybe 1/2 an hour. I did take her to pick up Erin and Katie at Sunday school last week. We were sitting in the lobby waiting for her big sisters and Rose was drawing lots of attention as babies often do. One mom was talking to her and I said, "Rose, say Hi.". Well she let out the loudest, longest HHHIIIIIIIIIII!!!!!!. I couldn’t have been prouder. Of course the next three times I tried it, it didn’t work. She picks her own moments. (Actually, DS kids don’t say their first words until about 16 months so she probably has a ways to go.) And she’s quite the game player. Peek-a-boo is pretty big right now. She’ll start the game herself either by grabbing a blanket or a newspaper that’s close by and covering her eyes until you go through the routine, "Where’s Rose? I don’t see her. Where’s Rose?" say that a few times and then she’ll peak out. Then you have to say, "Peek-a-boo!!" and then repeat all that about 20 times. Rose is getting more mobile. Here she’s put together a couple of rolls until she wedged herself under our coffee table Rose is starting to sit more. She’s been sitting for awhile. Just for longer periods of time. And she’s doing a better job of catching herself and keeping her balance. Still only for maybe 5 or 10 seconds. And then she dives in any direction. On Wednesday (1/11/99), Cheryl took Rose for a check up with Dr Hight , the GI surgeon. Rose’s skin has been a little raw around her G-tube lately. That and we wanted to talk about someday getting rid of the G-tube. Dr Hight and his clinician repeated that Rose still needed to demostrate eating for awhile without the G-tube. But maybe not 3 months, maybe a month. It was up to us and when we thought she was ready. Seems like there’s not a lot of precedents for this sort of a thing. Every case is unique. Rose is eating 3 spoon fed meals a day with one snack in the afternoon but she usually doesn’t finish everything. What she doesn’t finish gets mixed with her formula. If she can drink all that through the micro-bottle then she’s done but if there’s enough left over then she gets it through the G-tube. Well, either way it looks like a while longer. They did order a G-button. It should come in in a few weeks . Rose will have to go back in to have it put in. It will be more flush to her body so it will be less likely to get pulled and tugged on. Rose seems to be getting more sensitive to her G-tube. It’s about the only thing she complains about. She’ll start crying if she lays on it wrong or if it gets pulled or pushed against when she gets picked up. If she cries at all, we check her G-tube. We’re also probably just a bit jumpy from the 1st three G-tubes that fell out. It must be between 8:00 and 9:00 pm or on the weekend if dad is doing the G-tube feeding. Mom gets most of the feedings. You do have to stay pretty alert. Rose has been known to pull the syringe out when you’re not looking and an ounce of formula on your lap can make wuite a mess. We do end up feeding Rose in a lot of different places, between family get togethers and keeping up with Erin and Katie’s busy schedule. Usually a G-tube feeding. Rose doesn’t do the spoon feedings as well with a lot of distractions and they can be quite messy. Whatever doesn’t get finished with the spoon feeding usually gets mixed into a G-tube feeding so you can end up with some pretty unusual colors. So there you are, holding a young baby with a syringe above her filled with a strange looking concoction running through a tube that disappears under her shirt. I guess most people haven’t seen this kind of thing before. We can get some strange looks. Usually we explain and people are very understanding but sometimes you just don’t feel like explaining again. And then there’s the other side of it. Our kids are pretty desensitized to the G-tube. A few weeks ago, Katie asked me, "Daddy, did I have a G-tube when I was a baby?" Things seem normal after awhile. Rose drinking from the micro-bottle. It holds less then a teaspoon but she drinks it. It needs to be refilled about 15 times to get an ounce in her. But it works. Cheryl has actually managed to get through one or 2 feeds in a row without taking out the G-tube The similarities are amazing. This is dinner time at the McAuliffe’s. Rose usually gets fed before and then moves to her sassy seat at the table. Lately she’s been getting food to play with while she’s at the table; crackers, mashed potatoes, apple slice. Some gets into her mouth but most of it gets smeared on the table or dropped onto the floor. Pepper likes that. Rose is sitting in a special chair provided by her PT from the Birth to 3 PT, Karen T. You can also see a blue pad sticking out from under her. Its a special anti-slip pad. It makes it easier to help her sit up. She doesn’t need it as much now that she’s sitting better. A few months ago we used to wedge her into any seat with rolled up blankets. She doesn’t need them anymore. Rose with her dad and a friend on New Year’s Eve. We went to a friend’s house and managed to stay until 11:00. Rose wanted to stay up late and see the ball drop but she fell asleep around 10:15. We’ve been very fortunate in this last year. We’re a little frazzled and a little tired but we’ve all made it. Rose is a joy. She’s got a great personality. And as much as she makes us work hard all day long, she gives us every night off. She’s been sleeping from about 8:00 pm to close to 8:00 am since as soon as she came home. And financially we’ve done alright. (Insurance covered all but $2,700 of $180,000 worth of medical bills). We’ve got friends and family that have known before us what we’ve needed and just done it. I can’t imagine getting better help from more people. Rose’s mom being an RN has been a big help, and Rose having two big sisters to play with and to help out. We know we’re very lucky.
Rose at 11 months January 26, 2000
	A couple of weeks ago (Jan 19th) we brought Rose in to see Dr Greenstein. He’s a specialist with many genetic problems including Down Syndrome. He looked at Rose for about an hour. In general, he said that she’s a little behind in physical development but doing well in mental or cognitive development. She’s allowed to be a little behind after spending almost 2 months in the hospital this past year. Mentally, Rose does seem a pretty alert and curious although its still too early to infer how intelligent she’ll be. Usually initial intelligence assessments are done at 3 years of age. Sometimes it’s hard to accept the fact that Rose is mentally retarded. Not because we are in denial about her Down Syndrome but just because she seems so clever to us. Actually, I understand that the politically correct term is not mentally retarded but Educationally Mentally Retarded or EMR. OK… Rose is making progress in the feeding department with the general pattern of 2 steps up and 1 step back. She’s moved on from the micro-bottle. Cheryl’s come up with an adapter for a 2 ounce bottle. It saves some time. Sometimes Rose goes for it pretty good and other times not as much. Some days Cheryl will make through part of the day without taking out the G-tube. We still haven’t made it through a whole day yet. Probably still a ways off. Rose is getting more expressive. We’re figuring out more tricks to get her to smile. What else do parents and big sisters do? That and figuring out where to tickle her. The stomach area is out because of the G-tube. Cheryl’s pretty good about working Rose up to a pretty good cackle. General tickling around the neck and under the chin while saying “tickle, tickle, tickle” over and over in a really high pitched voice. You get the idea. Actually, I’ve had pretty good luck with tickling her back. Raising you eyebrows is pretty funny, too, for some reason. Rose has also been doing “so big” for a while. And a game that she and Cheryl made up called “This way and that a way” where she sways from side to side in her chair. I’m talking big sways here. And she’s figured out how to open her Jack in the box. Big news. Rose has crossed the “Sitting up” threshold. It’s been gradually coming for more then a month. She’s been getting better and better balance and sitting with less support. It’s not as dramatic as suddenly rolling over. Now she can sit for minutes at a time with good enough balance to reach for toys and stuff. While parked against the foot of the couch she’s played for over ½ an hour. Rose has graduated to the high chair in the last few days. She’s moved out of the sassy seat just in time. It was attached to the table and Rose had figured out that she could get quite a bounce going. For the rest of us, it meant hoping she didn’t splash the milk out of our glasses. Rose visited Dr Haight’s office about a week ago. She got her G-tube replace with a button. So no more 12 inch piece of tubing hanging off her stomach, tucked under her clothes or taped to her diaper to keep it from getting tangled. The switch went pretty smooth in the office. One minute the G-tube is out, the next minute the button is in. Rose gave a short cry and then settled right down. Not a big deal. Afterwards we got to visit the PICU and say thank you again to some of the Nurses and Doctors that helped Rose so much. And then we found the Family Life Office where thanked a couple of Family Life people that helped us so much. Actually, after a few days, we started to struggle a little with the new button. It’s a little tricky then the G-tube. The button isn’t quite as stable as the G-tube was. It moves around a lot more. Spinning is OK but it swivels around a lot. It looked uncomfortable and she was acting more uncomfortable. Anyway, Cheryl and I have developed new techniques to minimize the pull of the tube on the button when we’re feeding her. Seems to be helping. And we’re getting better. I thought at first that I would have a hard time doing feedings by myself but I think we’ve figured out enough tricks and gotten experienced enough to be able to. One downside is that you definitely have to peel back her clothes more to get at the button. No more easy access long extension cord. On the plus side, no more line to get tangled or tugged on.
Bronchitis February 8, 2000
	Like we need any extra excitement. Rose has bronchitis. We thought she was going to miss out on the McAuliffe family season of illness. Cheryl started the day after Christmas with the flu, then Erin got the flu, then I got pneumonia. We tried to be careful but not careful enough, I guess. Rose was a little under the weather on and off last week but over the weekend she started to sounded a lot more congested in her chest. It seemed odd that she could be so congested in her chest with no head congestion.. Cheryl took her in to see the Dr on Monday and they recommended an X-ray – showed bronchitis. So now she’s on her second day of antibiotic and starting to feel a little better. She’s lost a lot of ground on the eating and drinking. Right now she’s just getting small feeds through the tube, half formula, half pediolite. She’s been working up to larger volumes. Hopefully, in a few days she’ll be getting back up to speed.
Feeling Better February 12, 2000
	Rose is feeling a lot better. The antibiotic did the trick. She still has a bit of a flemmy cough but other then that she’s pretty much back to normal. Eating her 3 meals a day with a snack in the afternoon. She’s doesn’t quite have her appetite back 100% or her spoon feeding endurance isn’t quite back yet. But she’s getting there. Pretty much her old self. You know, rolling under furniture, grabbing glasses off of faces, those kinds of things. Rose is also tolerating her tube feeds a lot better. So between that and the spoon feeding she’s getting all her calories. Got to keep growing. We still feel that pressure even though the heart surgery is long since behind us. The tube feedings with the button are going a lot better. In hindsight, that first week must have tough because Rose was coming down with something. She had a flu / cold thing before it developed into the bronchitis. Now that she’s feeling a lot better she seems a lot less sensitive. At first, she seemed pained to any movement of the button. Now it doesn’t seem to be a big deal. As long as she’s not complaining, we’re OK. Of course, now Katie’s got a bad case of the flu... Rose and her sisters at the top of the run. OK, it’s actually the deck behind our house. The big kids do sled down the stairs into the backyard. It’s about a 4 foot vertical drop with maybe a 40 foot run to the sandbox at the back of the yard. Amazingly, they sled for hours with the neighborhood kids. I’m sure they’ll come back in 20 years and look at it and say, "This seemed a lot bigger when we were kids" Cheryl and Rose in a big game of peek-a-boo. Rose is sitting on her changing table playing with the wall hanging.
More Firsts March 12, 2000
	A lot of firsts in the last few weeks, Cheryl and I actually went out on a date. It was just a few hours at the local pub but we got to listen to live music and drink a few pints of Guinness. It’s our first night out in a long time. You forget what it feels like. Actually, it felt strange just to have only the 2 of us in the car. Rose had also really got the sitting thing down. Starting a few weeks before her first birthday she started to really get the hang of the balance thing. Here’s Rose in the most comfortable place in the world, her crib. Yellow bear has been with her since the NICU. The two stuffed animals used to get tucked under her knees when she slept to help keep her leg and hips properly positioned. She’s unbelievable flexible. Here’s Rose on our family room floor. This is where she does a lot of playing, general sitting and playing with toys along with a lot of rolling around. Also she gets her physical here, too, once a week with the Birth to 3 PT and as often as her mom and dad and 2 sisters can manage. You can see the blue anti-skid pad sitting on her chair. It works real well, made it a lot easy for her to sit sooner. I thought it was some hi-tech medical device, turns out its shelving contact paper. We had our first big family outing. We went Mystic Aquarium for the day. We were a little nervous about how Rose would handle it but everything went great. She didn’t sleep on either car ride but she was still in a great mood the whole way. We were there for about 4 hours including a picnic lunch in the parking lot. Rose was great the whole day. She seems to enjoy new situations. I think we may be getting braver in the near future. The prospects for going camping are looking better and better. Rose and Kate and Erin standing in front of the outdoor Alaskan Coastline tank. The big white thing across the bottom of the picture is a beluga whale. Rose loves taking bathes. She’s starts getting excited when she hears the water running. She no longer needs her bath ring to help her sit up. She does a lot of splashing and playing with toys, general baby stuff. If Katie is anywhere within earshot she’s got to be in there, too. The little plastic white button on Rose’s stomach is Rose’s new G-button. Cheryl tells her she has 2 buttons (one is her belly button) Rose continues to make improvements with her eating. It took a few weeks to get back to where she had been before the bronchitis The usual pattern of 2 steps up and 1 step back. Rose is actually starting to show signs of an appetite. Some mornings, after she’s been up for awhile, she’ll start yelling until she gets some food. She’ll do a pretty good job with her bowl of cereal. Then when she sees her bottle she’ll start doing the happy baby sounds and arm waving routine. Quite a few mornings lately Cheryl hasn’t had to take the tube out to top her off. Although, Rose usually fades some by the end of the day. Even then, she’ll still drink one or 2 ounces of her 5 ounce bedtime feed. Rose had her second hearing test. Here first one was when she was just a few weeks old in the NICU. SHe slept through that one. This one was an official visit to the audiologist at CCMC. We were referred by Dr Greenstein. Its one of those things that kids with Down Syndrome need to pay extrs attention to. The small ear canals and sinus passages lead to more congestion and more ear infections that can lead to impaired hearing. That's Right now Rose needs to be hearing as well as possible because its such an important time for learning what's going on around here.. Anyway, Rose did fairly well but she did have a little bit of congestion in her ear canals so we have to go back in a few weeks for another check up. And, of course, the real big deal is that Rose is now ONE YEAR OLD as of February 26, 2000. We had a nice party with many McAuliffes and Pickneys at our home. CCMC contacted FOX61 News and they came out and covered the special occasion. If you were watching the 10:00 news that night you may have seen us. We were all very nervous, except Rose. Rose enjoyed her cake. I thought for sure she was going to throw it on the floor like everything else we put on her high chair tray but she showed unusual restraint. The birthday pictures are still in the camera but I will Be getting them developed soon.
First Birthday Party Pictures ... finally April 13, 2000
	Finally got the film developed with the first birthday pictures. And, yes, that is Sara Cody from FOX61 holding Rose for those of you that missed Rose’s broadcast debut. Sorry that there haven’t been many updates to Rose’s journal lately. We’ve been busy looking back on the events from last year (not that there aren’t a lot of new things happening). Cheryl, Erin and I have written stories about those exciting moments in the PICU. In the e-mail from this past June 15^th I said I was leaving a lot out. This is what we left out. You can reach the stories through the "Stories about the day Rose lived" link on the Rose Page sidebar .