The sound of silence

**Apologies for a long entry even for me. This has sort of become our journal/baby book for the girls, and I’m sure is way too detailed and boring for everyone who isn’t a grandma in Texas…Maybe I should do a Cliff’s notes version 😉


I realized this week what a beautiful sound silence is. When both girls are fast asleep (even if it is shortlived), it is sort of shocking at first to realize that the house is quiet! I love Sophia’s babbling and even Zoe’s grunting, but it feels like a big accomplishment to get them both sleeping at the same time.

Sophia had her one year check-up this week. She had to get another finger poke to test her hemoglobin and lead. The doctor thought she should check Sophia’s lead level even though our house has been redone since the 1880’s because there is lead around outside, etc. She said we should be keeping our floors extra clean while we have little ones crawling around so they don’t ingest lead that has been tracked in. Do you think a cleaning person might be covered by insurance? She did write us a prescription for the Pediasure, so we are waiting to see if that will be covered. We really hope so as it would be about $10/day. Sophia also got 3 immunizations, but was very sweet. She cried hard at first, but when we started saying: “Peeeeeek-a-boo!!” she started with her little half giggle and stopped crying. During the exam, I was burping Zoe (who thankfully refrained from howling about only getting half of a meal before we left) and she spit up out her nose and mouth all over us. John started to pass me the burp cloths when Sophia started coughing and spitting up, too. The doctor was trying to clean me up and examine Sophia with spit up seemingly everywhere! She also had to have John hold Sophia’s head so she could look into her ears without Sophia grabbing for the light. She was happy with Sophia’s progress from being a really sick baby to moving around so much and having so much curiosity. She was most impressed with her eye contact and how she is interested in other people; this apparently is not always the case with people with Down Syndrome. Sophia is now 29%ile for height on the regular chart. Both girls weighed in well: Sophia at 20 pounds, 5 ounces (36%ile) and Zoe at 10 pounds, one ounce. Pretty soon I won’t be able to hold Zoe in one arm to feed her anymore.

Sophia also got her last Synegis shot for this RSV season (we’ll wait to see whether they want her to have another round next year). She was very playful with the home health nurse before the shot, but afterwards when she looked over and saw she was still there, she really howled! Hopefully, she is done with shots for awhile now.

Amidst all the poking, Sophia also managed to stretch her birthday celebration out for more than a week (her aunties are already influencing her). She had a few folks over on Sunday and did really well not getting too overwhelmed with extra people in the house; she just got a little quiet. She will have lots of fun dressing up in her adorable new outfits. She had a heart cake, (thanks to Auntie OrLou for decorating) and played with the pink whipped cream on top of it (and Auntie Karen even let her put her foot in it). At first I tried to find a wheat-free, egg-free cake since we hadn’t introduced those possible allergens yet, but then realized she wouldn’t eat it any way. Papa made a video of a few of the pictures and videos from the last year. Of course it makes me cry every time I hear “Ooh, Child, things are going to get easier.” If anyone wants a copy, let us know. I’ve been obsessing that we didn’t get any pictures of Zoe that day. We just focused on the birthday girl, but really need to remember to capture Zoe’s adventures too. Everyone said it would be different with number two, not only is everything not so new, but you have a lot less time! I imagine they’ll celebrate their birthdays together for awhile, so we shouldn’t make that mistake again.

We continue to work on sleep training for both girls. Zoe actually takes naps in her bassinet (or the car seat or Bjorn if we are out), which is so amazing. I keep going to check on her because I can’t believe she is really still sleeping. At this age Sophia was living in a hospital bed and napping whenever someone wasn’t bothering her, so we don’t really have any experience with developing schedules, etc. Sophia, on other hand, is still having trouble falling asleep at night. I’ve moved from rocking her to sleep or almost to sleep, to just rocking her for a short while for some books and songs, and then putting her in her crib. I started singing her to sleep in her room and am now singing her to sleep from outside her room. I realized “the book” was right, that she won’t get over her separation anxiety if I stay in there with her. So, I’m trying to do this gradually, but it is taking her a lot longer to fall asleep when I’m outside her room. Hopefully, she’ll get used to this and with patience we can get her to fall asleep on her own! She’s pretty communicating with me about which songs are okay for me to sing at night. She’ll “yell” at me when she doesn’t like the song I’m singing (which is most of them, especially the ones we’ve used to get her to sleep before and the lullaby-type songs) which is my cue to switch to a new song. Once I find one she doesn’t object to, it gets repeated until she ultimately rejects it or falls asleep. The first night she actually fell asleep to me just talking to her, then it was “Hush Little Baby,” then “Six Little Ducks,” then “There was a family had a dog and Mukwa was her name-O,” then “The Handsome Duke of York,” and then “Where is Thumbkin?”. It’s quite a mix, I never know which one will be acceptable.

Sophia has been having blood in her stomach (that we see primarily when it comes out into her feeding tube, but it also sometimes comes out in her spit up). We got in with GI on Wednesday, and he re-prescribed the ulcer med. He does think she has an ulcer either from the G-tube itself irritating the stomach or from the acidic stomach contents not moving through there fast enough (or both). Hopefully, this will help; she is to take it for 6 weeks. He also prescribed an antibiotic (which unfortunately can also cause stomach bleeding) to see if that helps the redness around her stoma. Some of it is probably from her moving around so much, but there might also be an infection there. Her hemoglobin levels are okay, so she isn’t losing too much blood, but the bleeding is a sign of irritation. They also tested the ph level in her stomach and found it was really acidic, so they are having us pick up her Prilosec every 2 weeks instead of monthly in case the suspension (liquid form) was losing its effectiveness near the end. She’s already at the max dose and we’ve tried other meds to neutralize the acid, so at this point we’ll see if this strategy makes a difference in the acid. That makes me really sad as I’m sure it really hurts to be spitting that stuff up, and she never cries at all about it. We’ll get it re-checked again when we are back next month for our cardiology appointment. We replaced her MIC-KEY button today, and it had blood caked around it, poor thing.

Sophia’s pediatrician called today, too, to say it was okay to introduce wheat, but she wants us to test for celiac disease (gluten sensitivity) when we get a blood draw for another reason. Apparently there s a higher incidence of this in people with Down Syndrome. We also need to test her every other year as it can develop later on.

Last Saturday we went to the Down Syndrome conference and learned more about what we can likely expect in the future. Zoe came with us so she wouldn’t starve, and we hung out in the back with the rest of the parents who brought kids. Sophia stayed home with her buddy Grandma. They had a really good day together and even got a nap in. Grandma also got to show our friend Ann all of Sophia’s new tricks. One of the speakers talked a lot about older people with DS and shared a bunch of generalizations: that they love musicals because of the visual component tied in with the music (sorry Auntie Erin); girls love Walker Texas Ranger (ughh! I think we should keep the TV in the basement permanently); that they don’t like loud or harsh voices and want everyone to get along; that the have two speeds: slow and slower (that one we’ll really have to adjust to); and that they really like routines, meals should be right on time and appointments should not be early or late. That is the one I feel worst about; she has seemed so easy going, so we’ve been flexible with her eating schedule based on when she wakes up and what appointments we might have. We’ll try harder to get on a more consistent schedule for both girls.

Zoe also got to make her first Target run. She needed tights, and all they had were tights that went from 5 to 18 pounds, quite a range! Of course they sag on her when they could also fit her sister, but that seems to be all there is. Although I don’t want to get into comparing the girls, it is really different to be able to just take Zoe in the car on my own; we still haven’t done that with Sophia with her spitting up (although that has seemed better in her new car seat ever since the really urpy trip to Pelican). I did feel really bad one night when I had to run to the pharmacy before it closed, and Zoe was suddenly hungry earlier than usual. I fed her a snack which I thought would tide her over since she seems to snack a lot herself. As it turns out, that wasn’t enough, and she howled the whole 2 miles to the pharmacy, but she did calm down before we got in there. She then got to have her first meal in a parking lot on University Avenue! She had apparently spit up at some point in her crying as there was milk coming out her nose. I guess I shouldn’t take her solo when she is upset…

Sophia has become so quick and so squirrely. One day I set her in the middle of the bed all calm and content while I went to get Zoe up. By the time I’d picked Zoe up, Sophia had rolled so that her legs were hanging off of the edge of the bed. Of course she fell off just as I was setting Zoe back down and just as Grandma was getting into the room. She calmed right away to “peeeek-a-boo,” but it was very scary.

Wednesday I took both girls (and Mukwa) for a walk on my own for the first time. It went smoothly, but after we left the cafe where we stopped for a treat (so much for the walk getting rid of baby weight) I saw this dog and thought “Oh, she’s cute” and then was startled to realize it was Mukwa! I would have completely forgotten her had I not passed her. Guess I need a little more sleep. It’s a good thing Zoe was attached to me in the Bjorn.

On Wednesday John also taught Zoe how to drink from the bottle. The tricks we learned from Sophia’s speech therapists really came in handy. She needed more milk than we had and we had to get to the doctor, so I wasn’t able to pump. We’ll start over again trying to build a supply. We probably should give her a bottle regularly so she doesn’t forget how, but it seems like a lot more trouble to pump so John can feed her when I could just feed her myself. She is a pokey eater though, so it will probably be good.

As if I needed something else to obsess about, I learned yesterday that our pastor growing up lost his 19 month old granddaughter while she was at Children’s recovering from heart surgery. He’d also had a stillborn grandson just a few months ago. I just can’t stop thinking about them and their pain. These horrible stories make me so incredibly grateful that our girls are okay. There are so many tragic things that can happen; it is really scary being a parent. So, I will remember to cherish our sleepless nights.
On a lighter note, Sophia had OT today and demonstrated great readiness for scribbling. She imitated her teacher and seemed to understand the crayon was for drawing and not eating. We also practiced cup drinking and putting toys back in to the bucket. Zoe has been really sleepy, so we’ll see if she sleeps tonight. I might have to keep track of how much time she is awake to see if we need to worry at all.