Unringing the Bell

Down.Town

GREAT new website with an awesome Kid Zone page that features a short animated film that explains how DS happens in kid-friendly language. Check it out!

When You're Cool the Sun Shines On You Twenty Four Hours a Day

Surgery Update

I am working on (in my head) a post on the attention thing, don't mean to be so cryptic, but for now let me grab a few minutes to tell you the newest on surgery.

The ENT finally called us yesterday evening (I guess my complaints got heard after all). He and a pulmonary specialist consulted on the sleep study test results today and it turns out Georgia has sleep apnea. He said it is relatively mild, but that she is stopping breathing an average of four times an hour. I guess it's considered mild because she is not losing oxygen during those periods--in other words, her oxygen levels are staying consistent even during the intervals of not breathing.

Apparently it is something that is not likely to get better and as a result the doctor wants to also take out G's tonsils (which we were hoping to avoid) when they take out the adenoids and put in the ear tubes. Because Georgia had croup their rule is that they wait at least 6 weeks after croup before doing this kind of procedure. As of today we are scheduled for July 2nd. Looks like we'll be spending the th of July weekend recuping. Ah well.

He said the Tonsils and Adenoids are a 30 minute procedure, the tubes 15 minutes and they are also going to do a sedated hearing test while she is under which will be another 30 minutes. Given how difficult it was to put Georgia under when she had heart surgery though, I wouldn't be surprised if it adds a bit of time to the allotted surgery time. She will be kept overnight for observation. The most common problem with this procedure would be with breathing and it would typically happen within a couple hours of surgery so they want her under their care in case anything happens. Recovery time is a bit longer now because of the tonsils and the most common problem with that is "bleeding out" at the site of the tonsils. As a result he said "You're not going to be able to go away to the beach or anything like that, you're going to have to stay close to home because if that happens it's serious." So we will be looking at a couple weeks of recupe it sounds like. And sadly, this means our lake trip that we had scheduled for the second week of July will have to be canceled or postponed. Dadgum it.

I should note that Georgia is sick now with some kind of new bug (fever, nose, eye gunk). Rainer also had a fever yesterday, but Georgia is downright sick. Of course, she really hasn't recovered from the croup yet and the combination of croup, new virus, and fevers is throwing her for a loop. She also has pink eye. It has been months since she has had a clear nose and it is really taking a toll on her. She is back on antibitoics as of yesterday and the doctor on duty (not our regular doctor) consulted with our regular pediatrician regarding how sick Georgia has been and for how long. We are going to do some blood work to look into her immunoglobulin levels (or something like that) to see if there is another contributing factor in why she is not getting healthy. The general consensus is that this surgery will help her out greatly in the long run, but at this point we have to GET TO surgery. The doctor said that if she just keeps getting sick up to the date of the surgery we will have to consider our options. If she has a fever and an actual cough we will not go forward with it until she is healthy, if it is a "case of the sniffles" we may choose to bite the bullet and go in in the hopes that she will get relief.

All this said, I will add that we have a second opinion coming up next week with another ENT office/hosptial just to cover all our bases.

So that's that. The apnea thing was a bit of a surprise. We have never seen her not breathing and we HAVE looked (knowing that apnea is common with kids who have DS). The only indicators have been her restless sleeping (although she never APPEARS to wake up over night and sleeps through until morning unless she is really sick) and her snoring. So...if you have any concerns, I suggest having a sleep study done. You never know! I even spent about a half hour in with her last night just watching her sleep/breathe to see if I could see it and I didn't. But I don't disbelieve them of course! I would just love to sit down and watch the video (they record the sleeping apparently) and have the pulmonary specialist point it out to me so I can see what it "looks" like.

I have a lot more to say--don't I always??--but it's on other topics and I am in desperate need of lunch a a few moments of relaxation now that the kids are asleep.

Ahem.

Excuse my outburst. I was mad. I still am. Trust me, friends, I've spoken to the nurses. They all know me by name...before I give it. I am just going to breathe this one out. I am hoping for answers tomorrow.

Hopefully soon we will be back to our regularly scheduled programming.

More Homework

When your kids got tubes (and/or adenoids removed) how long did it take between the appointment with the ENT and the actual procedure????? We keep getting pushed off and off and off and something that probably should have happened last year is STILL on hold. I was most recently told that surgery would be in June and now it's being told that surgeries are being scheduled well into July. I am so unbelievably mad right now. I wanted Georgia to have her tubes in time for the independent speech therapy we are sending her to, we're supposed to go away in July. I could honestly throttle someone. I feel like we are being totally jerked around and it's all at the expense of a girl who has been sick for MONTHS AND MONTHS AND MONTHS. I want her friggin' adenoids taken out! I want her tubes put in! I am so mad!!!!!!!!! And of course now all the paperwork is being transferred to this one doctor and we have all our records with him and just because he's at Hopkins or something????? He's supposed to be the best. SHIT. I want this over with! I don't know how he can be the best when I can never talk to him and all the bithces doing his grunt work are impossible.

Attention Span Homework

Hey folks. I'm wondering if you can do me a favor and answer a question for me. I will elaborate on why I am asking later after I hear some responses and formulate what it is I want to say, but can you humor me and answer before I do that? I want to hear the answers without offering up what I have to say so that I can hear an "un-"...what's the word..."un-influenced" (??) answer. What I mean by that is I am afraid if I write out my concerns you might be swayed by what I describe and I am really interested in hearing about your child. Does that make ANY sense? It's probably a tad annoying, but I'd appreciate any input.

My question (it's a several part question, to get you thinking) is this: What is your child (with DS primarily)'s attention span like? Does s/he listen well? Act on queue? Can s/he go from one activity to another? How does s/he do with transitions? Does s/he relate to other people/children regularly or does s/he tend to play by him or herself? Will s/he allow you to guide the acitivty? Will s/he walk WITH you? Does she ignore you or look at you when involved in an activity? etc....

I realize this might feel like a homework assignment, but I could really use some input.

How We Roll

My little sister came to visit us this weekend. That was a nice distraction from the humdrum. We spent her first night here catching up and chatting around the tiki torches in our backyard with some wine while the rest of the family slept. We even got to venture out alone without the kids several times and I gave her what she has dubbed the "quintessential Baltimore experience". That included: going to the farmer's market downtown under the expressway where we saw Geof from Ace of Cakes, and getting lost in the ghetto where we saw cops outside a rowhouse awaiting someone with their guns drawn. (Liz didn't see it at first and I was like, "Go! Go! They have their guns drawn!" because she was driving around like a little old lady with Florida plates on her rental car.)

Even though we had a visitor, Alex and I surprisingly (mostly Alex) also got some gardening done. We planted some coreopsis and also planted three judd vibernums which will hopefully provide a nice, though neighborly, bit of privacy between us and the folks next door. We considered arborvitaes for their full-on privacy-making abilities, but ultimately decided that they were a little...uninviting. Also, we don't need complete hermitdom (although I am prone to it...and perhaps that is why I want to make it harder for me to hide). I think in a few years the vibirnum will be big enough that it feels like they define our yard, provide a little bit of privacy, a LOT of yummy fragrance and look pretty (-er than the chain link fence). Also, it will not be so sudden and unfriendly to our neighbors who have been nothing but nice and even offered to split the cost of removing the mulberry tree that was dropping berries in their yard (we declined).

Here are the coreopsis:

I will post a picture of the shrubs when they are a bit more substantial.

Our roses that we planted last year are doing well.

I am hoping (and thinking) that they will get much bigger. This is the same variety as several neighbors have and they are pretty bushy and bloom all summer. These here are already twice the size they were last summer when we planted them. What's funny is that we planted red and pink roses last year and this year they are all deep pink. I wonder if they cross-pollentated or something. Is that even possible?

Today I finally got around to sorting the kids' clothes. It gives me the vapors. For one, it took forever. Ever since Rainer came along, laundry has felt like this insurmonatable task. It's absolutely NEVER done. I was never one who left baskets of folded laundry in bedrooms before--I always put it away in the drawers. Ha! Not anymore! In fact, I am rarely able to complete an entire laundry cycle. It takes the two of us reminding one another to switch laundry over and through and fold and sort and put away (or, as the case may be, into rooms) all week long and it NEVER feels done. It never IS done.

As a result of our never putting the folded clothes away, I find it sickening when I get to a bottom of a basket and realize one of the kids has grown out of this or that with nary a wearing.

Two. I filled up three bins of clothes the kids have outgrown. Most of those things are Rainer's. Granted, we have been spoiled with half-pint Georgia who has been getting her good use out of a lot of clothes, but Rainer is just zooming through it all. It sure is awesome that probably 80% of his clothes (if not more) were donated to us (many from some of you fine readers)! It fills me with anxiety though for several reasons. Sure, there's just the whole "Holy cow, we're going to have to buy more clothes before you know it" aspect of things, but the BIGGIE is, "What do we do with all this baby stuff?"

Rainer has outgrown clothes, of course, but he's also already outgrown some supplies (i.e. the Bumbo, the vibrating chair, the baby tub etc...). These are expensive things. Or, at least, combined, they add up! They are things that I would much rather see being put to use by someone who needs them. I DO have a lot of friends currently having babies (honestly, it seems like all my friends (the in real life ones who I knew pre-blog) are all starting to have babies at the same time...I didn't realize I was the only one until all these other folks started getting pregnant and I realized how ALONE I've been). ANYWAY....I am sure I know someone who could use just about everything we have. The dilemma? Are we going to have more babies? I truly can't answer that question. I go back and forth. It certainly won't be in the next year (or probably two) I can tell you that much. But...

And there's the rub.

I choose to not think about it for the time being. That is the beauty of an attic.

Although..........I'd want to know if there was something anyone REALLY needed.

What else? Hmmmmm.

I think I am actually going to be able to bring Georgia to school tomorrow (for the first time in two weeks). So help me if she comes home sick! We've been going nuts. We've skipped EVERYTHING. I am hoping to hear from the ENT tomorrow. I am VERY eager to have a date for her tubes and adenoids (and hopefully not tonsils). We've been so bored. I've tried to bring the kids out on at least one errand every day, and we've been going on walks and playing in the yard, but I have to admit we've watched our share of TV this week. I am not even going to apologize. Oh, but I WILL (try to) justify.

Look. Zombie kids.

Yes, it disgusts me that my 7-month-old is watching the boob tube so intently, but all I can say is, walk a mile in my shoes, huh? You pick your battles. Occasionally he gets sucked into the tube when Georgia is watching (and yes, that's a whole 'nother story....though I DO believe Georgia gets a lot from the educational programs she watches (and they are ALL educational programs (i.e. signing time, love and learning, seasame street) as she is an extrememly visual learner), but honestly, he doesn't watch all that much. Really. He doesn't. Do you believe me? Am I a bad enough mama? Should I write a book?

Ugh. I am annoying. Sorry.

ANYHOO.

Here is Georgia looking like a zombie again. Post-nap.

I took this picture because even though she has been able to climb up on the couch for a few months, she doesn't often do it unless we are on the couch also so I thought this was cute. She probably woke up too early that afternoon.

The kids come by boob-tubing honestly, anyway. Here Georgia is with her auntie who is playing Wii. I thought they looked like twins in their pink dresses.

Oh and Rainer! The teeth! TEETH. TWO of them. All in the same week. One is in more than the other, but here is a picture from a couple days ago.

He was miserable all week, most nights waking every two hours, but it seems like the worst of THIS set has passed since they have broken through the gums finally. He is much happier and he's slept better all weekend.

But this kid! He's just all of a sudden....zoooooooom! He's not crawling, but he's moving all around the living room in a sort of roll/army crawl/turn about fashion. His knees are red every evening though because he's CLOSE to crawling. And the appetite! MY WORD! This kid is going to eat us out of house and home--forget about when he's fifteen, he's going to do it at 7 months! He LOVES puffs, all fruits, especially bananas, watermelon, and mangos, sweet potatoes, corn, asparagus, avocado, beans....too much stuff to list. And he's feeding himself the puffs! He'll also take the spoon and stick it in his mouth (especially if I take a little too long or get distracted). It's all well and good. Wonderful even (especially considering the heartache I have had over feeding issues in the past couple years). I am sure around 18 months he will start giving us a run for our money and doing the picky thing. But for now I am thrilled. Except of course (because there has to be a but) that he whines incessantly if anyone is eating in his vicinity and not offering him a bite.

It has become my daily plight to figure out how to feed the two kids (since Georgia still needs so much help in that department) without one or the other getting mad or jealous or indignant. Also, we've discovered that Georgia must have a sort of low blood sugar thing. If you wait five minutes too long before getting her lunch she LOSES it. L-O-S-E-S. You'd be doing yourself a favor to remember snacks around 11 so that noon isn't so traumatic. Since the gal doesn't ASK for snacks, I don't always remember. I am doing my darndest to remember from now on!

And that's all I can think of for now. Nothing too earth shattering, but hey....that's how we roll and I am more or less okay with that.

Ya'll come back now, ya hear?

SWF ISO Faerie Wings

Nothing perverted, it's just the truth. Sadly, we were unable to make it to the Maryland Faerie Festival this past weekend which is a bummer because we missed seeing some friends (as well as a unicorn), but it's dawning on me that even if we HAD made it Georgia would have been decidedly un-faerie-esque. We have to get that girl some dress up clothes, STAT! She's got a new found love of preening in the mirror, so I think it's time for me to go against everything in my very tomboy nature and get the girl some fancy duds.I probably have a few fancy flowing scarves I can start her off with.

Laying Low

Well, Rainer's sick. And we are on a self-imposed quarantine.

Georgia is still croupy and now Rainer is going on day two of a low-grade fever and nose gunk, with a generally quiet and lethargic mood (that is, when he is not fussing because he can't seem to get comfortable).

We have canceled our therapies and school yet again for the week. After talking to the doctor this morning, the plan is to keep Georgia away from other kids so that she will not transmit or receive new germs. It has been MONTHS since she has been healthy and we are trying to get her well so she can have surgery. The verdict is still out as to what the extent of surgery will be (Adenoids and Tubes, or Adenoids, Tubes & Tonsils).

It's a real bummer because EI set up this special 5 week transition class for her and she has only been able to go once. There is one more next week and we'll have to see if she is able to make it. For that, I prefer keeping her out of class MOSTLY  because one of the other children is medically compromised and I would feel awful if we got him sick. Of course it is something else to wonder and fret about in relation to her language development--she's been sick so much this year. And of course, I really hope she is able to rally so she can attend the private speech clinic we want her to take part in at the local university in June. Also, the transition classes will really help her get ready for preschool in the fall. So we'll see, but hopefully she'll get rolling soon.

A lot of people have suggested taking Georgia off dairy to help with the nose gunk (thanks all, if I owe you an email, I apologize, I am WAY behind on that kind of thing). We've switched her to soy milk, but I think ultimately we are going to switch to rice milk. We'll see how that goes. Take away the yogurt (sadly) again for the time-being. Rainer is eating soy yogurt anyway, so we'll see if Georgia likes that too.

Sunday, we started to see a major shift in Georgia's mood and demeanor. Today, even though Alex was back at work, she was ALL smiles. Sweet and talkative and engaging. It made life feel SO much more...EVERYthing! Even though we're under house arrest and Rainer is ill, when Georgia is not in tyrant mode, it just makes everything feel more bright. I have been praying a bit on it in my own way. My hope is that Georgia hit a rough patch because she is about to make a big developmental breakthrough. I mean, I DO think the sicknesses and the meds played a large part, but I hope hope hope that over the next several weeks we'll see more advances in language and communication. We HAVE been seeing more signs and hearing more sounds, I just....well....you all know that I dream to hear her talking in a productive way more consistently.

In light of the good mood, I am going to post some pictures that just make me so happy. In all honesty,I was going to post them even if Georgia woke up being a pill again this morning, but it makes it all the more sweet for me to look at these pictures and recognize the sweet girl in them. And my sweet boy, too. I hope he's feeling better soon. This is his first real sickness and he sure is a sad sight today.

(Okay. I know it's prideful for me to say since it is my daughter, but this picture devastates me. I just find her so pretty in this one. Not beautiful, just SO pretty. My girl! My girl whom I love so much! So I am sorry if I come across obnoxious when I admit it.)

No more pictures!

This one reminds me of an album cover.

This is the face Georgia makes when you ask her to give you a big smile. Goober-goo!

And my little pumpkin. He's cutting a tooth (lower front left) and as a result he's been making this face a lot lately.)

Munchkin.

He and I were playing peek-a-boo around the wall on the left.

Okay, I'll admit it. He slays me as much as Georgia.

Those kids 'o mine.

No Excuses

Lianna posted about some great commercials for inclusion coming from the Canadian Association for Community Living.

Here & here.

Check them out.