Unringing the Bell

He's Home! He's Home!

Some days when Alex gets home from work, Georgia runs up to him and wraps her arms around his leg. Funny, that's exactly what I feel like doing when he walks in the door. As if to say, "Darling! You're home! Save me!"

Today he came bearing Georgia's new antibiotic script and more Infant and Children's Motrin and Tylenol.

They wouldn't nap at the same time of course, so instead I decided I would make the best of it. I rolled with it. And we went on a walk as soon as they were both finally UP simultaneously. They both do much better out of the house. Especially Rainer. I've been trying to get us out for a walk for the last several weekdays, but one or the other of them is asleep, or we have therapies, or it's lunchtime. Today, Alex came home and we went out. Found a new park nearby. And then out to dinner.

Sometimes you just gotta' go out to dinner.

Tomorrow is Wednesday and we have nothing on the calendar. Do you think we'll make it? I hope so. I think we should enjoy our free day. In the next several weeks we have more appointments than you can shake a stick at.

That boy takes his food seriously.

He isn't rolling much, but he's trying to sit. (Yes, that IS spit up on my leg.(

Georgia was feeling nostalgic for her old toy.
 

This was then.
 

Stating the Obvious

The hardest thing I have ever done, bar none, is attempting to juggle these two kids. Georgia was up much of the night screaming in pain (we believe it is her ear bothering her again) and Rainer was up on all Georgia's down times upset about his teeth.

I don't have enough arms, I rarely have enough energy. Especially after a sleepless night. The guilt is, at times, monumental. I can't put Rainer down because he cries and cries, but Georgia still needs me to feed her, to read with her, to help entertain her. Let alone be there to hold her when SHE'S in pain.

Georgia is much more capable than Rainer obviously, but I can't help buy think about how much easier this would be if she were a little more self-sufficient. If she could TELL me what she needs, if I could set food on her plate and she could feed herself. Sometimes I think I know what it would be like to have twins.

People have been telling us that boys as babies are more difficult, I don't buy into those stereotypes, but Rainer is one needy fellow. He wants to be held near constantly. If it's not reflux, it's teeth, if it's not teeth, it's has hatred of tummy time, if it's not his hatred of tummy time, it's separation anxiety.

We are at that stage where if I leave the room--heck, if I walk two feet away from the lad--he crunches up his face and cries.

I am exhausted. Physically, emotionally.

I need to go take a nap.

This gets easier though, right???

Truth or Manners?

 

Shocking ads, for sure. And wonderful. Thanks to Jen for pointing them out. Today is the Spread the Word campaign.

 I am guilty of using words that are truly mortifying. In all honesty, at times, conditioned as I am, I still think some of them. It makes me feel absolutely lousy and embarrassed. Sick, really.

Using the word retard and saying "Oh, it's just a word," does not hold any water with me. It's common sense to me that if a word offends one ought to remove it from their lexicon. There are bigger battles to fight. Because of that, some people might think that taking any time on this issue at all is fruitless and naive. I disagree.

It's not profound, but mountains are formed one rock at a time.

I commend the Special Olympics for having the guts to make such ads. It's not something to pussyfoot around really. It's not time to be polite.

Won't you take the pledge?

This and That

Poor Rainer. His reflux has been acting up. He's drooling up a storm and as a result, congested. A little rattly cough shudders his body and he looks at me as if to say, "What the--? Can't a fellow catch a break?" He spends most the day with his bottom lip sucked in like a little old man, or a turtle.


Alternately, he looks...just kind of peeved.

We've been busy. Friday we had our DS playgroup--it's monthly, but we haven't been able to make it since before Rainer was born because of one thing or another. Georgia is now one of the big kids in that group and she enjoyed playing with all the toys. One thing--can't decide how worked up to get about it--we've been noticing is that Georgia is incredibly independent. OK. This isn't really a NEW discovery, but we've really been noticing how much she likes to go off and explore toys on her own rather than sit in a group. I can't fault her for this...I've been known to do it myself a fair share. But there you go. We're going to see what happens as she transitions into preschool (starting in June with the EI group--they also have a 2 1/2 y.o. program).

Saturday we had a playgroup with the people at our new church and Sunday we went to another event sponsored by our local DS Parent Group. We went to The Ultimate Playzone which is essentially a big room filled with climbing toys, inflatable bounce houses, and slides. Georgia had a BLAST. I honestly wasn't sure HOW she'd do in a place like that and I worried she'd be too small, but she LOVED it. Alex was able to go on all the rides with her and I wish you could have seen her face when she went down the slides! (I didn't have my camera because I decided to BE in this moment. And besides, it's hard to juggle two kids, socializing, and a camera some times.)

We have several regular playgroups on the calendar now and it's good. I never thought I would be the type of mom who had regular playdates, but I really honestly like the folks we meet with, so that helps. Also...my kids get BORED, heck, I get bored. Since I've gotten better at taking both kids out at once we've made it a priority to get out at least once a day.

Final update-y bit. We purchased the first couple kits from Love and Learning and we have jumped in with our eyes open and our hearts hopeful. We are doing this "program" and hoping it has an effect. Georgia, thankfully, seems really into it. I wouldn't want to drill her. In fact, this program is about as far away from DRILLING, in my opinion, as you can get while still teaching in a somewhat repetitive way. Honestly, we only started on Saturday, but we're actually seeing progress already. I don't know if it's because Georgia was ready and this has opened a door, or what, but we'll take every bit we can get.

Georgia has been regularly pretending to sneeze (it sounds just like "ah-choo") and she's started telling us what sound a monket makes when we ask. (Complete with hand gestures.)

We have cut back TV to only include DVDs from the Love and Learning series. We will also allow one other hour of constructive TV if needed (because yes, sometimes I NEED help from the TV) or desired. Luckily, getting out of the house curbs the need/desire.

Self-feeding is as messy an affair as ever, but we're seeing progress.

And now, we await the OT. (And also for Rainer to wake up again.) Looks like we won't get out before therapy like I had hoped, so off to read books with Georgia!

She's Got The Funk

I guess I ought to get used to it. Starting next fall when Georgia is in a class room between two and four days a week, she is bound to come home with all sorts of The Funk, but my goodness. This girl can't catch a break. I know the exact child who gave it to her, she coughed in her face upon our entering the room and proceeded to do it at least three other times. Georgia woke up with a croupy sounding cough that has me wondering how many of our pre-planned "dates" we'll actually get to. I am bummed because today was a visit with friends, tomorrow the DS playgroup, and Saturday is supposed to be a new playgroup with the people from our new church. Let's just hope the antibiotics that she is ALREADY ON somehow help her with this. (Although, yes, I know the difference between viruses and all the other gunks.)

Dang.

So. Pictures instead.

Georgia just hanging around.


The scene I came home to after running to the store the other day. (In the second photo, Georgia is in the middle of a knee-patting solo. She's got really good rhythm--for real!)

Hates. Tummy. Time.

Likes. Toes.

 

Developmental Milestones.

When I was pregnant with Georgia I signed up for one of those weekly update emails. Throughout the pregnancy (I did it with Rainer too), I would get emails telling me "Your baby is the size of a lemon. Now it's the size of a soccer ball." etc. They continued after she was born giving me updates on developmental milestones.

Any SANE person upon learning that their child had a developmental disability might, you know, have gone OFF the list so as not to beat herself up over the fact that we have NEVER been anywhere near on target with what those things say. Actually no. That's not true. In fact, we were on target for a little while, but call it some kind of morbid fascination, call it masochism, but I liked reading where my child "should" have been. I guess--on a good day--I thought of them as goals.

Trust me. I quit reading them a long time ago. However, I never went off the mailing list.

I think it means I have come a LONG way that when I received the update today, which said something along the lines of "Your 28-month-old: Ready to learn French??" I just larfed and larfed. French! Too funny.

I'll admit though, now I get the same updates, but corresponding to Rainer's age. He is relatively on track, but Rainer is not particularly adventurous when it comes to physical moves. His big thing is that he likes to "stand" and he's also sitting for a few seconds at a time unsupported--although he is NO WHERE near ready for me to remove the buffering pillow tent I put around him when I let him sit alone. But roll over? He's done it a few times, but he's in no hurry to try it again. On purpose anyway. He just discovered his toes in the last day or so, and well, I'll be honest. I still check out the stupid milestones list to see if my kid is on target and get a little freaked when he is not necessarily doing this or that.

But it's no where near what I think it would be if it weren't for Georgia who helped pave the way for me. Who helped teach me that it'll happen when it happens and there's no sense stressing out about it.

Ha! I'll qualify that with 'too much'. We all know I have done my share of stressing throughout (not just lately).

Over the Fence

Some days, when we don't have any therapies or doctor appointments, my only adult interactions until Alex gets home are with the librarian when I am picking up a book that I've had on hold or with Alice S. my back yard neighbor who is always "babyitting" another dog. Today, along with her own pup (a Golden Retriever whom she likes to make fun of for being such a "delicate little flower" because after four years she STILL won't go in the kitchen alone) it was a Burmese Mountain Dog.

I like Alice. She lives alone, must be in her eighties, and almostalways has at least one other dog out in her yard along with her own. She likes to ask me  how the family is doing when I am bringing out the trash or raking the yard. I am convinced she can't hear a word of what I say although I talk extra loud for her and always walk right up to her back gate. I gesticulate wildly hoping she can get my meanings.

She tells me how nice it is, this time in my life. Two beautiful children and a loving husband. She's assuming of course, but she is right about the make-up of my family. I wonder about her from time to time. She wakes and goes to sleep on the later side. I know this because I often see her in her house dress letting her delicate flower of a dog who all but has her legs crossed out close to 10am, and other times after 10pm in her night gown calling her in before settling in for the night.

If I don't see her for a few days I worry. I've considered checking in on her a couple of times in the almost year (already??) that we have lived here, but having never been invited onto the other side of the fence (primarily because of the dogs is my guess) I instead breathe a sigh of relief when inevitably she pops back up again a few days later.

I suppose I am shy, but the guilt of not checking gnaws at me even now moments after speaking with her when I know she's ok. Although in part, I blame the fact that I am a product of our stand-offish society.

She calls Georgia Miss Georgia and her own Georgian accent is undeniable. She never misses a chance to tell me that she is expecting her ninth great-grandchild this June. "That's pretty good, doncha' think?" she always follows up with. I agree, nodding my head wildly, smiling.

We never chat for longer than a few minutes. Her dogs are always eager to get back in, I have to get back to the babies. But I appreciate our brief and sporadic conversations. I think I might bring her some cookies one day. Or maybe pumpkin bread. A drawing done by Georgia in school?

We are surrounded by either elderly folks or young people on each side. The only people who attempt conversations with me are the older folks. I count them among my friends and try to catch the young folks when they are out, but the few conversations we've had are awkward. I think, in this day and age with all the impersonal computing we have going on, it would do us well to remember to actually talk to one another from time to time.

So I challenge you. Say hello to your neighbor. If you were mine, I'd appreciate the invitation to talk more than you might know.

Quickly No Small Potatoes

Just quickly. We enrolled Georgia in preschool. She'll start in September. I will give more deets later on when I have several brain cells firing at once.

Also though. It may not seem like much to some, but yesterday when I got Georgia up from a nap she made a sort of Tsssss sound (think, snake-sound but with a 't' in the beginning). I absent-mindedly copied her--Tsssss--while changing her diaper. We must have gone back and forth saying Tssss at least six times before I realized she was also copying me. This isn't the first time she's ever copied me, but it DID feel different.

Then later in the day she sneezed. One time. But she followed up by PRETENDING (achoo!) to sneeze (the noise and the head bob) two more times! I was stunned! Then I pretended to sneeze a couple times throughout the day and she copied me again.

It's so weird. Sometimes she does and sometimes she doesn't. The other day, a couple weeks ago, I handed her a fruit snack and clear as a bell, clear as anything I swear--at least I THINK--she said "Thank you." It would make sense, I am always saying and signing thank you to her when I hand her things hoping that she will catch on. But ask her to do it again? No way!

It makes me feel crazy. It makes me feel like I am either having auditory hallucinations or making it up. Who knows, I am just nuts enough lately to think maybe I AM hearing things.

Did I ever tell you about how she has an Elmo doll that talks when you shake his head (and his mouth opens)? Actually in the Subaru (my car) she has  a Cookie Monster and in the VW (Alex's car, and the one we use for long trips) she has the Elmo. She is often playing with them while we are in the car. They laugh, say 'hello', and 'cowabunga'. I told Alex one day that without meaning to, without thinking about it, I have begun thinking of their voices as Georgia's voice. Sometimes "she'll" be chattering away back there and suddenly go quiet. Oftentimes I will turn to look, or catch a glimpse of her in the rearview mirror then just to check. She'll smile at me, sometimes make a goofy face, and then shake her Elmo or Cookie Monster. The doll says 'hello' or 'cookies!' and somehow my brain has been wired to think of it as her.

I long to know what my daughter's voice sounds like. Sometimes when she is babbling I catch a hint of what I think it might sound like. To hear her talk now would feel like magic. I know it would. Like a miraculous bell ringing.

I know that in my heart. But at the same time, I have to let it go to an extent. I can't keep dwelling on it because it doesn't do her or I any good. I will keep plugging forward with therapies and new ideas. But if she never talks I will have to live with that. She communicates. And that has to be enough. For now. And maybe for always.

Stress Ball

That's what I feel like. A huge big ball of stress. There is SO much going on with Georgia, so many things we are trying to work on, accomplish, check out, look into. She's sick and fatigued. We have a million appointments on the horizon. I keep learning about new things to look out for and check on. And new standards and criteria. And I am in the midst of joining new groups (which I am happy about, but it adds to our schedule) and volunteering. And then tonight, at the Welcome Committee meeting which I joined I learned about a girl (with DS) who is 2 1/2 and jabbers up a storm. Apparently she is something called hyperlexic?? Which is like, the opposite of Dyslexic? Anyhoo. Meeting all these new talky two year olds with DS and it just chafes me. More than anything. I LOVE hearing about them, I really do. It gives me hope, but it also cuts like you wouldn't believe. And wondering what's right and what's not right. And what should we have done? And why have we waited so long for this? And even if THAT is expensive, wouldn't it be worth it if only...and and and and and! Rainer won't let Alex put him to bed. I can only go out or be alone for less than 3 hours (usually less than 2). The house needs a million repairs. The yard. The frackin' yard! Georgia won the eating battle this week. But the girl was making herself sick and the antibiotics didn't help. And tomorrow is the new preschool. And even though it's not an interview I am still nervous. And I'm leaving Rainer with a sitter for the first time and I am afraid he is going to act atrociously for her. And really. I should go to bed. I want to live in the moment, but my calendar is full. And my daughter is a child and not a lab rat. But I want the best for her. I want the very best that I can give.

Tubes, Speech, T & A

No. Not THAT T&A.

I have a question. Did any of you DS moms or dads notice a change in your child's speech after having tubes placed or tonsils & adenoids removed? We have our regular every-6-months hearing test in a couple weeks and I scheduled an appointment with her ENT to have Georgia's ears cleaned a couple days before. She gets LOADS of wax in her ears and I know she will absolutely not pass the test (again) if her ears are full of gunk. Since our ENT is particularly hard to get in with, I want to make sure I have all my questions ready when we go see him for the ear cleaning. I didn't think Georgia had lots of ear infections (in part because though she has been treated for them, they have never been definitive diagnoses since the doctors typically cannot see into her ear canals (because they are small and she struggles a LOT). But let's say this that what she is being treated for now IS an ear infection and the others definitely were too. That's (I forget), either 3 or 4 ear infections in the last year alone. THAT seems like a lot, no?

When we saw the ENT last summer he wanted to use the wait and see approach on tubes, but I am beginning to wonder if they might help not only alleviate the suspected ear infection problem, but help her hear better, and maybe (MAYBE) begin speaking? There goes that pesky hope showing again.

We have the sleep study coming up which will help us determine whether or not the T & A removal needs doing as well. I am going to chat with the ENT about that too. Because if we do end up doing T & A, then wouldn't it make sense to have the tubes placed at the same time, rather than having her sedated two different times? (Oh my gosh, the thought of her being in the hospital again just gave me shivers, especially considering the fact that she is MUCH more cognizant of her surroundings than she was when she was a wee little and because we now also have Rainer to look after too). But I digress.

Anyone notice a speech difference after tubes? What about after T & A removal? That's all I am really trying to get at. I have a million things on my mind obviously.

Thanks!