Sofia at speech therapy

Monday, July 30, Sofia and her speech therapist shared some quality time playing with the baby doll...

Chance encounter, making connections

At the supermarket this morning, Miss Sofia was being delightfully friendly and cute (as usual). A lady stopped at one point to comment how adorable she was, and a few aisles later we ran into her again. This time we settled in to chat. Of course she is a nurse (they are ALWAYS the ones who can spot Sofia's extra chromosome - it's so amazing to see it happen again and again), and so taken with Sofia. Aside from the professional assessment, she also had a personal interest - a relative recently got AFP markers back (indicating a high chance of Trisomy 21).

We chatted a bit abotu our prenatal experience. She said the expectant parents are very positive about things, but are looking for information. Of course I told her all about "Gifts" and www.trisomy21online.com. I also handed her my cell phone number, in case the expectant couple want to talk to a BTDT family.

I love those kinds of conversations. First, if feels good to be able to help someone, and especially to help someone see all the joy and blessing this little daughter of mine has brought. But it's also so much fun to talk to a professional who can recognize how well Miss Sofia is doing in all her varied activities. I love bragging about my kids! (And it turned out her oldest son also has dyslexia - there are always more connections when you stop to dig).

That definitely helped perk up my morning, which started badly when I accidently put cleaning solution on my contact lense instead of saline. My eye still burns badly, but I've been flushing it with water and saline most of the morning, and it's definitely better.

Miss Sofia is refusing to nap, although I've tried several times. Now she's bugging Sam, who is trying to watch a video. I give up.

Micah is in CT this week, being spoiled by all his grandparents. David's mom picked him up from my folks this morning for his day at their store, and then he'll be with my family the rest of the time. I miss him!

We had a busy weekend. Saturday we drove up to Maine, had lunch in Kennebunk, and then went to LL Bean. It turns out there are free concerts every Satruday evening, and next week it's Arlo! So I think we're going back up, camping on Friday, and going to the concert.

Sunday my parents came to get Micah, but we also had a pool party, so we brought them with us. Ugh. It's very stressful. And the fact that Micah pooped (fortunately not IN the pool, but let's just say that David had to bleach the terrace while I helped Micah change) didn't make things easier.

Migraines and bloody noses

Yuch, I hate this kind of weather. It looks nice enough, until you walk outside. Then you can feel the humidity and the pressure. My head is killing me. My back is all knotted up. I'm not happy.

And then Micah is getting repeated bloody noses, especially during swimming, AND he's gone back to pooping in his pants...and bathing suits... Obviously something is going wrong, but other than blood and poop, there are no indications. Sigh.

But I had a fairly nice afternoon with Sam. He had his 8 year old checkup, and then we went to the arcade and then a little shopping. Sofia stayed home with the babysitter.

Card for Special Needs baby

Hmmm, last night I got to wander around the grocery store all by myself (a small slice of Heaven!). As I perused the greeting cards section, I noticed a card for "Parents of a Special Needs Baby". It was very lovely, and the first time I'd seen one. But I wondered if I'd really want that card, if I had a new baby, or if I'd just want a "normal" card. Interesting.

Ok, there's a new Poll element we can add to our blogs, and I want to try it. Please check out my Poll on the right...

Busy weekend, and Sam starts summer school

Whew - what a busy few days it's been. On Friday, I was lucky to have a Girl's Day in Ogonquit Maine with J & D. I left Sofia home with the babysitter, and M dropped Micah at his bus stop in the morning. I also arranged dinner for David and D's family, and Micah had a sleepover at another friend's house.

So the three of us girls met at 8:45 and drove up together. J had a quick errand at the bank (they are building a vacation home up there), so D & I went over to the antique store for a while. We all had fun (J met us there) roaming around looking at the stuff.

Then we parked, and walked the ocean-view walk along the cliffs. It was much hotter than I'd planned - the sweat was just dripping down! We stopped for lunch, and then shopped our way back to the car. The stores were all the typical beach-side crafts and clothing and things. I bought a pair of flip-flop earrings, and cute mermaid hangar for Sofia's room, and a little glass heart for David.

Then we got our beach gear and headed for the water. When we got to the beach, there was barely any room to put our stuff - it was so crowded - but around 5pm people started leaving, and we stayed until nearly 7. It was lovely. The water was cold, but it felt good to rinse off the sweat, and there was a nice breeze. I actually fell asleep for a while, which was much needed.

After dinner, we changed clothing again and had a lovely dinner. We got back to Framingham around 10:30 - I slept in the car most of the way home - and then I drove D home. It was so nuce to get away!

Saturday, we all miraculously slept until after 8am - probably because Micah was not there to wake us at 6:15! (Oh, and because the family where he was staying over had called at 4am - he had a terrible tummy ache - but then he was ok).

We got up, dressed, and went to shul for a while. Poor Sam wanted to play with The Boys, but this gang of boys who are his age just are not well-behaved, and their parents don't make them do anything, and Sam's had problems with them before (there are two brothers who can get a bit rough, and they have actually punched Sam before). So I just don't want him hanging out with them. Unfortunately, there are not a lot of other kids his age, but when we got into services, he did find another friend, a girl from his school class, so he was content. And Miss Sofia loves to stay in babysitting, so I actually had a nice time sitting with the adults for a change.

We went home, had lunch, changed clothing, and then headed to Sudbury to pick up Micah. We ended up staying and talking for several hours (the older brother is one of Sam's best buddies from school, too, and the parents are both friends of ours). It was a lovely afternoon.

And it kept being lovely, because when we left their house at about 4:15, we went to Concord. We had ice cream, and took a long walk, all the way up to the North Bridge and the Old Manse (where the "Shot Heard Round The World" happened - the start of the Revolution!). It was a beautiful day. Of course Micah couldn't walk all that way, so we took turns holding Sofia and Micah rode in the stroller a lot.

We had a very nice dinner in Concord, and got home after 9pm.

On Sunday, we got out of the house around 9am, and went down to CT. We picked up my inlaws and went to a New Britain Rock Cats baseball game. Now, I have no patience for spectator sports, I think Baseball is the most boring "sport" on earth, I hate sitting in the sun, and my relationship with my inlaws is....well, interesting....

But I really had a nice time! Before we even went into the stadium, I attempted to donate blood. I got all the way through all the screening and paperwork, got on the table, sat there while she got all the collection materials ready. Then she stuck the needle into my one good vein ... and used too big a needle. The blood started for a moment, and then the bruise formed and they couldn't get anything else out of me. Sigh. And my other veins are all smaller, so they didn't even want to try, because they only have the one size needle on the Red Cross buses.

Oh well. I went into the stadium and met up with my family - and we got to sing and dance to a SteveSongs concert! Yeah! Sofia and I had a blast. I'm a SteveSongs groupie - the music is so bouncy. I think Sam is a little too old to enjoy himself, and Micah had a more fun eating than dancing.

During the game, I spent a lot of time walking around, taking the boys to the gift shop or getting Sofia ice cream or just people-watching. I also spent a long time sitting in the shade with my father-in-law. We actually had a decent conversation, mostly about David and the boys.

We were there all day - it was a very long game. Then we went to dinner, and got home around 9:30.

Sam started summer school this morning - he was so excited to ride his bike to school! Now David and Sofia and I are going to run some errands...

Orthopedics visit was just fine

Sofia had her checkup with the Orthopedist this morning at Children's Hosspital in Waltham. When we'd gone for Cardio in May, I just walked across the hallway and scheduled a "blind" appointment with any doctor available.

The doc we got was a very nice lady, and knew immediately what to look for with Sofia. We were there for two reasons:

1. Now that Sofia is walking, her feet tend to bend in at the ankles and her legs are bowed. Doc said this was perfectly normal for new walkers, and that laced-up good shoes are best for support, but otherwise, there does not seem to be a need for any corrective items.

2. Atlantal-Axial Instability: this was the biggie. Here, I'll quote from http://www.ds-health.com/aai.htm:

AAI denotes increased mobility at the articulation of the first and second cervical vertebrae (atlantoaxial joint). The causes of AAI are not well understood but may include abnormalities of the ligaments that maintain the integrity of the articulation, bony abnormalities of the cervical vertebrae, or both.

In its mildest form, AAI is asymptomatic and is diagnosed using X-rays.....Symptomatic AAI results from subluxation (excessive slippage) that is severe enough to injure the spinal cord, or from dislocation at the atlantoaxial joint.

Approximately 15% of youth with DS have AAI. Almost all are asymptomatic. Some asymptomatic individuals who have normal X-rays initially will have abnormal X-rays later, and others with initially abnormal X-rays will have normal follow-up X-rays; the latter change is more common....

The neurologic manifestations of symptomatic AAI include easy fatiguability, difficulties in walking, abnormal gait, neck pain, limited neck mobility, torticollis (head tilt), incoordination and clumsiness, sensory deficits, spasticity, hyperreflexia...and {other spinal cord} signs and symptoms. Such signs and symptoms often remain relatively stable for months or years; occasionally they progress, rarely even to paraplegia, hemiplegia, quadriplegia, or death. Trauma rarely causes the initial appearance or the progression of these symptoms. Nearly all of the individuals who have experienced catastrophic injury to the spinal cord had weeks to years of preceding, less severe neurologic abnormalities....

Most importantly, symptomatic AAI is apparently rare in individuals with DS. In the pediatric age group, only 41 well-documented cases have been described in the published literature....

Asymptomatic AAI, which is common, has not been proven to be a significant risk factor for symptomatic AAI....

Ok, so what does that mean? It means that there is/was a possibility that Sofia's neck vertebrae could be a little too mobile for her own good. So she had to get neck x-rays (she wasn't thrilled, but the techs were very very skilled and it was a quick process) before I could safely allow her to do things like gymnastics.

So I'm VERY pleased to report that her neck looks just fine, not too much mobility at all. We'll recheck when she's about 5 years old.

They also xrayed her hips, because the loose joints can develop problems, but everything looked fine there also.

Whew!

She's truly a toddler

I'm just not good with toddlers. I'm great with babies - I've got plenty of patience for babies. Toddlers, however, wipe me out! On Monday, Miss Sofia wanted to stay one step ahead of me and K during our Early Intervention session; she did not want to do any of the tasks that K offered, but wanted to do her own things in her own time.

Then, Monday evening, after we picked up the boys from camp, we had a picnic for the incoming kindergarteners at the day school. Miss Sofia wanted desperately to climb up onto the play structure and run on the "bridge", but I would not help her climb up...so she climbed up by herself! Oy. It's going to be very difficult to control her on that playground now.

Tuesday we met M for EI at the local KidSpot playground, and once again she was all over the place. She's so physically active, it's wild to watch her but soooo exhausting.

We had Sam's Arts Night performance tonight. Someone PLEASE remind me not to bring Micah and Sofia to it next year! Micah whined the entire time, and Sofia kept trying to run away. But Sam was excited and the play ("Charlotte's Web") was very cute...for the first 20 minutes...and then it went on...and on...and on.......

David was up in New Hampshire for the past few days, but he's home now. And his sister showed up last night, so now he's grilling her on her work and living plans.

I attended a very lovely luncheon this afternoon in honor of the development director from the day school. She's leaving to work for her husband's company, much closer to home. But she will be greatly missed. I felt very privileged to be invited.

Friday I'm going to Ogonquit with my girlfriends - yippie! Babysitter will be here all day with Sofia, and M will drive Micah to the bus (and he's going to have a sleep-over at a friend's house after camp).

I can't even remember the past weekend - I think we relaxed - oh yes, I even got to plant some tomatoes and peppers and herbs! I did take Sofia back to the pediatrician on Saturday, but she did not have a urinary tract infection, and she was just slightly dehydrated. By that afternoon, she was feeling alot better. And we spent much of Sunday at the pool.

Oh, please go vote for the American Express Member's Project again. We dropped to 5th place in the first round of voting, and we need to stay up in the top 5 to make it through Round 2.

"Get the Light Saber OUT of the Iguana"

No reason for the title, other than I just needed SOMETHING to make me laugh, and that has to be the funniest "mommy" phrase I have ever heard myself say (fortunately it was a plastic iguana).

What a week! Recap: The Great Ice Pop Chase, Toby's passing and funeral, all the logistical arrangements for the boys so we can go to NYC, the trip to NYC, and then Sofia's fever. Which got even worse last night (after she threw up at Micah's camp show).

She didn't completely throw up again, but we could hear her tummy bubbling from the next room at around 11pm. We gave her another cool bath and got her fever headed down again.

This morning she started fussing around 5am. Temp at that point was 100.4. I managed to get her back to sleep. At 7:15, when I was done with my shower, her temp was back up to 102.4, and this morning she was not at all interested in eating and barely interested in drinking.

Fortunately, the fever really seemed to break after that dose of Ibuprophen. But by then the doc wanted to see her, to rule out anything nasty. The quick-strep test was negative, and her ears were fine, but her throat is still red. AND since she's barely eating or drinking, she did not have a wet diaper all morning. I was told to check back in with the nurse by 3:00.

Sofia fell asleep in the car on the way home, and the cleaning ladies were just arriving when we got here, so I put Sofia in her stroller and the two of us napped in the back yard. The nurse called at 2pm to check on her, and said that if she didn't have a wet diaper by 3pm, we'd need to go to the hospital for an IV! Yikes, at 3pm I had to start driving around to pick up all the boys (since J's dad was having his back surgery today, I was to pick up at both Sam's camp AND Micah's bus stop).

Fortuntately, I managed to get Sofia to eat a whole PediaPop when she awoke from her nap, and then she did indeed have a wet diaper. Whew. So off we went to pick up the boys. Sam and J were late coming up from the Shabbat celebration, so we made it to Micah's bus stop just as the bus was at the light. Then I got all the kids some ice cream (but Sofia refused to eat it - totally unlike her).

By the time we got home, Sam was a wreck. He needed to poop, and wouldn't admit it, so he just kept having tantrums and hissy fits. The neighbors were all playing outside when we got home, but by the time I got down there with the boys and Sofia, I'd had it - they all suggested I go home and have a Margarita! I wish.

Shabbat dinner started out very stressfully, since both my boys were off-the-wall miserable and Sofia was not feeling well again. But fortunately, once people started eating, things got better. Sofia ate a lot, and although she refused to drink when we were looking at her, twice David heard her gulping water, only to have her toss the cup at him if he turned to look at her.

All the kids took baths or showers, and FINALLY they are all asleep (J is sleeping over tonight). Now David and I are having trouble with our wireless Booster, so I'm sitting in the living room (since I get no reception on the Mac in this house).

Hopefully it will be a more peaceful weekend. Shul in the morning, maybe go to a bubble-car show in the afternoon, and friends over in the evening, and the pool club on Sunday.

Oh! There was a funny moment this morning: After I dropped off the boys and raced home to clean up the house in preparation for the cleaning ladies (come on, you all do it!), Sofia and I went to Shoppers World to help R work on her wedding registry and just hang out before the pediatrician appointment. We went into Marshalls, because R was looking for nice flip-flops for the girls. As soon as Sofia saw all the lovely little girl shoes, she started frantically signing "shoes" over and over! That's my girl. We tried on an adorable pair of pink Merrills, but opted for pink Stride Rite sandals instead (only $14.99!). It took her a while this afternoon to get used to them, but by evening, she was running around our neighbor's driveway like a pro.

Fever baby

Sigh. Miss Sofia woke this morning with 102.8 temperature, and it's been bouncing around between 99.6 and 103.4 all day. I spoke to the pediatrician's office; there's not much to do until the fever's lasted 24 hours, other than motrin and tylenol and keep her cool. So we're been alternating meds, and this evening she got 2 lukewarm baths. She also threw up during Micah's Family Night at camp, and almost threw up just now (late-night; we could hear her tummy bubbling from our room).

I also managed to get lost going from the JCC in Newton to Micah's camp. Took more than an hour, and Sam missed the swimming time, but at least we were there for dinner and the presentation. Very frustrating.

But I had a lovely time at J's "Girl's Lunch" at her pool, while Sofia was home with the babysitter, taking a nap. At least something went well today.

New York City for Toby's funeral

Last night we got the boys off the M's house, and David and Sofia and I headed down to CT to visit his cousin and her hubby and son. We had a lovely evening visiting with them, and H made delicious banana pancakes this morning (yum!).

We got into Manhattan with plenty of time to spare. I'd fallen asleep somewhere along the Henry Hudson Parkway, and when I woke up, I was surprised to see we were already in the city!

At the Funeral Home, we gave our condolences to Toby's sons and their wives, and also to some of her friends whom we had been priviledged to meet when we went to the Lifetime Achievement Award ceremony in May. We hung out with my dad's cousins E & P and their mom J (and eventually P's wife M, but unfortunately I did not get a long enough chance to chat with her).

The service was so lovely. The rabbi was a woman who had interned at Dorot, the program where Toby had been such an active volunteer, and Toby had mentored her. The cantor was also a woman whom Toby had mentored, and she sang a most beautiful song, "They Are All Falling Around Me" [I just spent 45 minutes trying to find the lyrics online; no such luck. It's by Sweet Honey In the Rock, and it's on the Selections album - apparently the lyrics are in the CD.] Several people spoke, including a woman from the swimming pool, and J, whom we had met and made friends with at the award dinner. I also spoke, on behalf of the extended family.

E came with us to the cemetary; it was really nice to spend time talking with her. It was brutally hot and humid in NJ. The Chabad rabbi and the cantor made sure we dug enough of the dirt, but I don't think everyone there understood [It's a Jewish tradition for friends and family to fill in the grave with dirt; it is the last mitzvah you can do for someone, and it is something they cannot repay you for.] I sang "Eli Eli" (since I wasn't able to sing the "El Molay" memorial prayer, because the cantor was already in place and also a dear friend of Toby's).

Then we went back to the city and went to the apartment for a somewhat awkward lunch. Everyone was checking out the things they wanted. I finally got to take the painting that Toby had promised us years ago - it was still in the closet. I also somehow got a cowboy hat (J was trying it on everyone, and they decided it looked best on me), and we got two small paintings, too.

We didn't leave the apartment until about 4pm, and got stuck in Danbury traffic. Fortunately, at that point, the family that Micah was with promised they would bring him back to our house, so we were able to relax, and we stopped in Plainville for dinner.

Two interesting Down syndrome related side stories:
1. At the apartment, there was a relative named S. She stopped me at some point and commented on how beautiful Sofia was. It turned out she had had a sister with DS, and she told me the story of how, 80 years ago, children with Down syndrome were put in special schools - her sister was in The Woods School in Pensylvania, which apparently was very expensive for the time. She was a very smart girl. S remembered that her first full sentence was "I can't do it". She lived until her 40s.

2. When we stopped for dinner, the two ladies sitting in the booth next to us turned out to be social services workers - the one who spoke to us the most had worked with ARC for 10 years and a variety of other agencies. The other lady was a librarian in Southington. We had a long and delightful conversation about Sofia, and I got to tell them all about "Gifts".

Ok, I'm beat. Tomorrow is going to be a busy day - get Micah to the bus, get home to meet the Developmental Specialist, leave Sofia with E while I go to my friend's house for a "Girl's Lunch", then pick up Sofia, drive to Newton to pick up Sam, and go to Micah's camp for Family Night (it starts at 4:15, which means no way can David make it!).

Rampaging Toddler

She's run amok today. She refuses to nap (I've tried 4 times, including driving an extra 30 minutes). She's completely wrecked my downstairs. All the Tupperware is strewn across the floor. There are cracker crumbs everywhere (she signs "cracker" so nicely!). She keeps hitting the music button Micah's "Diego" backpack to hear the funky Latin Jazz music. I've had to pull her away from the garbage pail 6 times. She's experimenting with everything she can reach, including putting her head into the paper bag on the floor. Now she's trying to put a disposable sippy cup lid on top of her straw-sippy (she already tried adding an extra straw). She is SOOOOOO funny!

I'm exhausted, both from running after her (trying to stop her from touching EVERYTHING!), and from all the details of the past two days, arraigning rides for the boys and dealing with The Great Popsicle Problem.

The Great Popsicle Problem: At Camp Grossman, they serve the kids ice pops each day to cool off. My friend L is the nurse, and she checked the packaging - there is apple juice in the ice pops, so Micah is allergic to them.


So I sent in a bag full of ice pops that he wasn't allergic to. But I sent the pops in a ziplock bag, without the label. The kitchen firmly sent them back, demanding to see the heksure (kosher marking). Since I had thrown the box away, I had to try again.

So I searched until I finally found something labeled and acceptable. I handed the bus counselors an entire box of Stop&Shop brand Citrus pops yesterday morning.

Micah got off the bus in the afternoon practically melting. Not only had he lost his bathing suit (not sure where, since I very clearly remember putting it into his backpack), but he had not gotten any ice pop. He didn't know why. So I chase the bus to the pool, to question the counselors. Turns out some other kid had brought in ice pops for a birthday treat, but they used Micah's pops instead! But she knew there were at least 2 pops left, so he was ok for today.

This morning I spoke with the nurse and she'll go get him another box. Thursday nigth is his bunk's Family Night, so I'll look for his bathing suit in the Lost & Found (if he doesn't find it today).

In the mean time, I had to figure out all the logistics for tonight and tomorrow. The boys will sleep over M's house tonight, and she can drop Micah his bus stop on her way to taking Sam and her son to their camp, and another dad will get Micah onto the bus. But M's hubby is having a surgical procedure in the afternoon, so while she can arrange the other boys to stay late, she couldn't pick up Micah. So I found another friend on Micah's bus (the one good part of racing to Clearbrook to catch the bus!), who will take him home tomorrow for a while. Whew!

So now David and Sofia and I can go to Toby's funeral. I've gotta go pack. But today is my "Get It Done" day - I've booked the 5 rooms needed for R's wedding, ordered contact lenses and a new camera, edited the TI survey, and booked dentist appointments for all three kids. I guess now I have to clean up the house from whirlwind Sofia!

(Oh, now she's talking to a Tea Ball...)

In Memory of Toby L.

My "great-aunt" (really my grandmother's cousin) Toby Lebenson passed away this morning, in New York City. She was in her 90s, and a really active lady right up until a few months ago. In May she was given a lifetime achievement award from the community center she started 65 years ago.

The funeral is Wednesday in the city - David and Sofia and I will go down. I'll miss her alot. She was an amazing woman.

In other news, Miss Sofia is rapidly adding to her vocabulary (both verbal and sign), and seems to have given up most naps. She's starting to get fond of staying up to watch TV with Mama and Dada, too.

We went to Sakonnett, RI this Saturday, to visit our friends at their summer home. I've been going there almost every year since college. They have a boy Sam's age and a girl just a year younger than Micah, and the house is right on the water, so the kids all had a blast together. Sofia loved the beach!

Sunday we went to the pool club, and then had dinner at T&L's new house. David was in a miserable mood all day, yelling at me and the boys, but we worked around it.

Pictures from the weddings!

I put up 2 pages of pictures from our weekend in Vermont. The first is Jenny & Joe's wedding reception on Saturday night, and then Barry & Jean's marriage on Sunday. Click the link at the right or just go to our Photo Site now!

Promoting the AMEX Member's Project for Down Sydrome Awareness

You've all seen the TV ads - well, did you know that one of the projects could get copies of "Gifts" into the hands of every OB in the United States?!

So if you are an American Express cardholder, PLEASE vote! And if you are not, please spread the word. Most of the contributing authors for "Gifts" have bought as many copies of the book as we can afford and donated them to our own Obstetricians, but there are so many out there!

Greetings from Rutland Vermont

Gosh, I just love free WiFi at hotels - it's so much better than the reception I get at home!

Last night we had a big wedding reception for my cousin J and her "new" husband - "new" because they've been together about 12 years so far, but they just got married in December (in the Bahamas). It was also the last party at the old house where my cousins grew up. This afternoon my uncle is getting remarried, and he and his new wife (also a J) will live here in town (Rutland) rather than out on the farm. So it was a bittersweet time. I took a ton of photos of the house and the area. The kids all had a blast. Micah fell in love with a little toad, which he carried around for quite some time, until finally my cousin P helped him let the froggy go free.

I may have had a wee bit more to drink than usual ;) because I got REALLY sentimental and sobbed when someone mentioned my aunt. I do miss her, but right then, I looked over at my uncle, who had his arm around his fiance, and he looked SO happy. I am just thrilled for him. He deserves to be happy again. He and Iris had been together since they were in junior high, so when she died, it was really hard on him.

So anyway, I ended up hugging his fiance and telling her how happy I am for them, and I was teary-eyed for hours.

We got back to the hotel around 11pm, and of course Miss Sofia, who had fallen asleep in the stroller by 8:30, was wide awake for a while. I stayed up with her (David has to do all the driving today, so I wanted him to sleep), and then Micah was awake (and arguing) before 7am this morning. Ugh.

Now the boys are waiting for the hotel pool to open - they and my nieces will swim for a while, and then get dressed for the wedding. Hopefully David will take them to the pool - I need a break!