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.