Weight Lifting & Neck Strengthening

Who Knew...

...that it could take such hard work to lift one's head...
...it's a pretty little head!
Who knew such a simple little act...
...could make his Mom so happy that he can do it?
He seems pleased with himself! He's been lifting his head all along, but his big sister is sitting just out of camera angle, coaching him on to hold it up a little longer and to find the toys she dangles in front of him. She pats him and speaks sweet to him when he starts going "Aaank! Aaank!" and she can usually get him to stay in tummy time for a few minutes longer than when he'd rather be done with the whole affair!

Busy, Busy, Busy...

No time to write at the moment...I'm busy snuggling my babies!

Is it a Cinnamon Roll or a Tortellini?

It's neither an "innee" nor an "outee," more like a "flatee."

Initially, Jack's belly button looked like a cinnamon roll. Might have had something to do with the fact it had just come off and was a tad, ummm, icky. I sent a picture of the cleaned up version to my friend Beth, and she thought it looked more like a tortellini. What do you think? Vote by comment please!

She's at it Again!

"I'm not looking!"
"Still not looking!"
"Is she gone?"
"If I can't see you - you can't see me!"
"Okay - I give up!"

Does it Never End?

The Oldest continues to pick on The Newest.
But he seems to like it!
Good thing his big sister is one of his favorite people!
She sits back and giggles hysterically...
...while he merrily chews on his hands!
Yes, those are his pants on his head!

Okay, so now I am SCARED

I wrote about week ago that Jack has a referral pending to the big children's hospital. They called today to set up his appointment.

Let me just say to start that Jack is healthy. Wonderfully healthy. And if he needs glasses in his very near future, he will no doubt sport them with flair. We finished out his fifth month not waiting for heart or bowel surgery or any of the other things that can go amiss with our babies with and without Down syndrome. He's healthy. He's good! So why am I so worried? It's the title of the doctor that scared the bejeebers out of me - Neurologic Opthamologist. It's a scary title. So are Jack's optic nerves and disks suddenly worse because he's seeing such a scary sounding doctor? No, of course not. I keep telling myself that it's all a cake walk from here on in because none of the stuff I worried so frantically about came to fruition with his birth. It's all good. And I keep reminding myself that I am not one of those terrified parents clinging to the edges of chairs in the waiting room for hours while their Littles undergo massive surgeries. Jack's small optic nerves and disks are not going to take him from me. I keep feeling that I have no right to be afraid of this. But I am. And I don't know why. Is the shoe about to drop?

A Couple O' Shout Outs & Stinkerie Stamps!

I'd like to send a couple of shout outs. Because I can! I have learned how to create links! And because I should. These wonderful women have helped me along on my journey so far, and thereby helped my family. They all rock! So, watch me link...

First, I'd like to thank Jenee Ross. She is the first person I contacted by email back when the news was so fresh and raw. All I really remember from the initial email I sent her was, "Can you tell me what I'm supposed to do now?" She wrote back several times, encouraging, answering questions and giving me hope for Will's future. I remember her last line of a particular email saying, "Remember he is a baby. He's just a baby." When I wrote an extended email to family and friends, following up on the fact that so few of them had contacted me once they knew, I tried to address their avoidance and I kept Jenee's words in mind when I wrote, "He is a baby. Our son. He is not a disease, a condition or a tragedy. Please don't avoid me because you don't know what to say to me. I don't know what to say to me either!" After a few weeks I glommed on to another mom and spent the rest of my pregnancy emailing her, but I was soooo happy when I discovered that Jenee was that "first mom" to calm me! Thank you Jenee...I'm forever in your debt! I'm sending the First Ever Stinker Stamp to you! (I just made that up!)

Down Syndrome New Mama recently spent some time on the phone with me showing me how to load pictures of My Littles without anyone being able to lift them! I am not computer competent - I can find the ON button - but she is brilliant! And with 6 Littles of her own, the time she took with me is so appreciated! And now that I've figured out how to link, thanks the Miss K from the ART - (the same Miss K who helped me quickly install Jack's car seat that long ago November day) - I can thank her publicly! Thank you Down Syndrome New Mama! You rock! A Thankful Stinker Stamp to you!

Another shout out to Kelle Hampton of Enjoying the Small Things. Will was just ten weeks old in my arms while I sobbed over her telling story of her Beautiful Nella's birth. If you haven't read it already, this is a must read, but you'd better have a case of Kleenex handy. A full case! A Soggy Stinker Stamp to Kelle!

Another shout out is to CH of The Adventures of Pudge and Zippy, just because these two kids make me so happy! CH writes about them so beautifully that I swear I can hear their laughter and little voices in her words...oh, wait a minute, I can because she so often includes video! I think I may have creeped her out a little with the few emails I've sent her, because she has never written back, but Zip reminds me of Jax, and My Girlie adores Pudge! A Happy Stinker Stamp to CH!

And the last one for now, and probably my biggest is to Beth, wonderful Beth, and her daughter Hannah! Beth is the mom I glommed onto after Jenee. How she has continued to put up with my repetitious questions and sometimes outright ignorance, I will never know. But she has and I am grateful for her Internet friendship and personal phone calls. She is the one who bestowed Jack with the moniker of Snake. When I write to Beth I call him Slither! She is Jack's Virginia Other Mommy, and I'm sending a Slithery Stinker Stamp to her!

Thank you ladies, from the bottoms of all our hearts! You all rock and we wouldn't be in as good a shape without you!

Okay, So Maybe He Is Small...Small-ish.

Christmas Day, 6 weeks.

April 12th, 5 months.

Same outfit...

...and a few inches to spare yet!

We're In Hot Water!

I finally have some really good pictures of Jax smiling - in the bath tub! I changed tactics tonight. I got the house nice and warm like always. And I took him into the tub with me. Just like I did before. And I stood there with him naked against my skin until he was all dreamy. Just like every other danged time! But this time I made the water almost as warm as I would like it. And I sat down with his feet in the water, lowered him slowly, and - he was fine! The Girlie used to love a hot water bath. No carefully just so water for her. Apparently, Jax-Snax also likes a warmer bath! He didn't even start hollering until I had him on my legs to get washed, and he was all smiles again once I dunked him back in the water. He was downright limp during the shampoo! Success at last! Not only did he enjoy his bath, but The Girlie caught him smiling!

A Girl and Her Dolly

Jack is My Girlie's favorite toy! Be sure to check out the vicious pit bull in the upper left hand corner!
And he works very hard to please her......or maybe he's just trying to get a handful of her hair!
You can see he is laughing just as hard as she is! Just look how well he's holding his head up! His EI and PT keep saying how hard I must be working with him because they see such progress, but I must admit, Miss Peach does more than I do!

Fartie Floyd and The Opthamologist

Poor Jack has tummy trouble today. His farties are so volumous that they vibrate my hand and make my whole hand warm! Kinda like when he pees around his diaper but without the mess and plus the stink! He squeals a little when he passes a toot, but once it's passed he is all smiles again. Not as in "Hey I farted and it's funny becuase I'm a boy!" more like, "Oh...I'm glad that's over!" So he has a new name FARTIE FLOYD!

We trekked off to the opthamologist today. When I heard it was going to be Dr S, I was really happy because I had been her patient about 20 years ago and really liked her. The doctor who walked in was not familiar though. But then, it had been 20 years! So I asked if she used to practice at a different location and it turns out that she is indeed the same Dr S I remembered and liked! And she was great with Fartie Floyd! He didn't much like having drops in his eyes and he really didn't like it when she started looking in there! She was really patient and gentle as possible with him. He kept rolling his eyes up into his head and then -pop- back down they came like the cherries in slot machine! That part was funny! Jack did not think so.

What Dr S had to say was none too funny neither. His optic disks are small. Not horrendously small, but small. She's referring us out to the big childrens hospital about an hour and a half away so they can do further testing and find out what this nystagmus is all about. She also confirmed what I thought but am simply too blind to see clearly...my Tator Tots eyes are turning a deep hazel.

He's A Flipper!

It wasn't a fluke! Jack showed off his new flipping talents for The Daddy last night, and again for the girls from the ART this afternoon! You go, sweet Jack!

Baby Mauled by Bear

Guess What My Boy Did?!

I was wrapping gifts this evening for The Girlie's birthday tomorrow. It's almost midnight, so both of The Littles are in bed asleep. I needed something from the nursery, so I patted Jack on the tummy as I walked by. He was playing on the floor - my little night owl! I looked in on both of the Littles as I walked by. Yep! They were both asleep! When I came back, Jackie Boy was face down on his belly noisily sucking his thumb. I said "Hi Baby!" and jiggled his diapered butt with my foot. What? He was on his belly! His belly! By himself! So I flipped him over, trained the video camera with 22 minutes of tape left to go on him and waited. He was cooing and gurgling and batting at his toys and turning onto his sides and having a jolly good time with himself. He was turning back and forth onto his side and onto his back. And onto the other side. Back and forth. And with two minutes remaining on the clock, he turned himself over onto his belly and pulled his arm out from under himself to lift his head up and look around! You go, Jack! That's my boy!

Easter

"I've got moves like Fred Astaire! Where's Ginger?"


"Thank you Easter Bunny...but right now I'm talking to the hand!"


Jack has a handful of grass and he's thinking about biting some too!


The Easter Bunny has been at it again!


It was really windy Easter day.

Easter

As I type I keep looking down at Will, sleeping in my lap on my bent knee, under the keyboard. His head sticks out so I can see him smiling every few minutes. I wonder what he's dreaming about? Surely such sweet smiles must be from memories of before he came to Earth, memories of Heaven.

After yesterdays stresses with My Big Boy, it turned out to be a rather relaxing Easter today. I knew as soon as I went into the front room to get the video camera that The Middle had already inspected his basket. I knew he would. He likes his time up in the morning before everyone else. It seems to set his mood for the day if he can kick around in his room before the house is awake. The rules are that since he wakes by 5 am every morning, he is to stay in his room except for the bathroom trips. To him, that means he is allowed to play in the bathroom. As long as he does it quietly. So, I saw the basket and knew that a few things were not in the same spaces that the Easter Bunny had left them. No matter. He didn't open anything and it was probably a fun time for him to see everything before anyone else. He could have at least pretended to be surprised though. Then again, I don't want to encourage those skills. Note to self!

The Littles had their fun with their baskets while I video taped. They opened their toys and started in right away with the choice videos the Easter Bunny left them. First up were the squeaky rodents followed by Scooby Doo and the something or other. There are too many to keep track of.

I am happy that they know parents hide the eggs. It is so much easier! They had quite the fun time scampering around collecting eggs and stopping to pose for me 'mid-find' to take a picture. My camera battery lasted right up until the last egg was found and not one picture more. Consequently we had to take pictures of Jack surrounded by eggs in the grass several hours later, and then of him batting at his Easter basket. Jack wasn't much impressed by the day's festivities. His Easter outfit had him annoyed though. It's one The Middle wore when he was tiny. It has a wide bib collar sort of thing in front and it kept getting between Jack's hands and his mouth. He grumbled and carried on for a good thirty minutes trying to go to sleep with his thumb, so I unsnapped the front and tucked the bib inside. Then he was able to get to his thumb unencumbered and went to sleep for a nice nap.

Both of The Littles now know how to peel boiled eggs! The Girlie only likes the white and usually gives the yolks to me. When I finally got yolked out, her brother was happy to eat them for her. They had a few times today where they worked together to make each other happy, and I did catch Miss Peach sneaking her eggs into her brother's basket at least twice during the egg hunt. It is due to the patient instruction on the part of Miss Peach that The Pod, or Podifer, now knows how to peel a boiled egg. She helped him get a toy out of it's package and he helped her figure out how to open a tricky tin of M&M's. I love it when they work together for their mutual good, but when they do it just to be nice to each other it is extra good!

We didn't do a big Easter dinner. We're saving our honey ham for when The Dear Daddy gets home. Maybe I'll even make some deviled eggs. When he called this evening we reviewed our day with each other and how the kids were doing. I asked him if he thought Will was much different than The Littles had been at this age. The Beloved has already said that Will cries less, and he says he smiles more and "He seems more ambitious. It seems like he wants to be up and about like he's got some place to go and something he wants to do. He's the funniest little baby!"

Bunny Boy

Today The Littles and I took the Bunny Boy to meet The Easter Bunny! We waited in line for about an hour. When we were next to the next in line, The Girlie confesses that she's a little scared to sit by E. Bunny. I tell her she doesn't have to, but it would be for just less than a minute and it would make a nice picture. So she did, with The Boy-O and The New Bunny Boy! And then we snapped a pic of just The Bunny Boy with the Easter Bunny! He wasn't nearly as impressed with all the goings on as I was, but he didn't get upset either! Happy Easter, Bunny!


Then once we were out of the line, but still in hearing of all the other littles still in line, The Middle announces for all to hear, "Mom. That is NOT a retired Easter bunny like you said! I could see a person through the eye holes under that helmet!" Can you guess how popular we suddenly were with all the other mommies and daddies who had also waited for an hour in line with their little darlings? I gave The Middle a little shove forward, a subtle nudge to offer him up with a look that said, "Hey, he's the one who said it, not me!" Okay so I didn't really offer him up to the mob. I did give him a little nudge forward but I was just trying to get the heck out of Dodge before the other parents rioted.

Then we came home to color eggs for the festivities tomorrow. While The Littles still believe in all manner of fairy-tale folk, The Girlie did catch on to one thing. "Mom, Dad isn't going to be home for Easter, is he?" No, I say, he won't be home this year, he's working. "So who's going to hide the eggs?" What? The Easter Bunny, of course. Well, she's not having this. She gives me her best and most ferocious "MOM!" look. I say, Okay, you got me. Mommy and Daddy are really the ones who hide the eggs every year. I'll do it this year. So she thinks for a while. She's not upset that we've been hiding the eggs all along, but neither is she finished chewing this bone yet. "So who always hides the eggs at Grammy and Grandpa's house?" I tell her that Grandpa always snuck out to do it. "Darn it! Then what is the Easter Bunny good for anyway?" With raised eyebrows I regard her with utter astonishment. Well who do you think leaves that basket of goodies for you every Easter morning? Face brightens. Looks happy. Faith restored. Then concern..."Mom, I hope I didn't hurt the Easter Bunny's feelings. Do you think I did?" Tears starting to well...No honey, that bunny is busier than he's ever been right now. It's not like Santa who knows what you're up to all the time. He didn't hear you. Relief, "I'm really sorry," she says. I assured her that all was well. They went on to finish the eggs with a reasonable amount of fun and anticipation.


So The Littles colored eggs while I videotaped. Jack was happily going for a whirl in his swing and could not have cared less about getting his fingers all shades of purple, blue, green... The Boy had to be told about a million times not to throw the eggs into the dye. And to use the spoon to get them out. And to not stick his whole hand in the dye. And no, for the twelfth time, it doesn't taste good. Yes, I'm sure. And he bickered with his sister and accused her of trying to dye her eggs darker than his, prettier than his, faster than his...and I did my best not to launch myself across the table toward The Boy in a Homer Simpson imitation with my hands around his neck to throttle him. Sometimes he is just purely exasperating. Thank God above, by the time Jack is old enough to color eggs, they will be teenagers who are too cool to color eggs.

On to bright idea #3. Equally disastrous. I bought four premade cookies, two bunnies, two eggs, complete with premade frosting and decorations, all in one handy package. Great idea, right? Wrong! The Middle wound up getting frustrated and insisting he couldn't do it. I got frustrated and recommended he just throw them out...I was done! And yes, I did say that...it's all right there on the videotape. The Girlie did manage to produce a bunny shaped blob of yellow frosting with all the candies piled on top. No one had fun with the cookies. No one.

When The Beloved calls later tonight I will relate our day to him. He will say something like "It's just that I know how you build things up in your mind Sparky. You set standards that no family event can ever live up to," from the bedroom scene of Christmas Vacation. He has oft likened me to Clark W. Griswold. I don't know why, but he does. It frustrates me. I have been known to throw bridal showers, several baby showers and a few kids birthday parties right out of the pages of Better Homes and Gardens. Better in fact. I have received thank you notes from guests, for other couples' baby showers I have hosted, for inviting them to such a wonderful affair. Me! Why, oh why, can't I orchestrate a simple evening of coloring eggs and decorating cookies for my own kids without all the screaming and yelling and gnashing of teeth? I don't get it.

One thing odd. A lady ahead of us in line was holding a darling little baby girl. She kept looking at The Littles and smiling. A conversation ensued. She asked how old Jack was. Exactly two weeks older than hers. What did she weigh at birth? 1.5 pounds heavier than Jack. We held them up to each other when I said, Wow, what a difference two weeks can make, but then, little girls should be small and dainty. Six pair of adult eyes, and those of The Girlie turned toward me. "Mom, she's bigger!" Really? I ask. Nods all around from the cute little girls' mom, dad, aunt, friend, grandma and grandpa. And some people who were with other kids but witnessed my insanity all the same. I look at the sweet baby girl. I look at Jack. We hold them both up again. It must be me, I say, He just looks big enough to eat her! I smile sheepishly at the other mom, Really, to me he looks bigger, and she graciously says, "No, she really is bigger," smiling. Wow. I swear that Bunny Boy was way bigger than that sweet little girl. And boy was she pretty! Now I know what Big Blueberry Eyes are! But I digress...at her last appointment she weighed 13 pounds, 14 ounces. Jack weighed 11 pounds and 3 ounces just 4 days ago. How much more proof do I need? Well, there is the fact that for most of the time I sit writing these posts, Jack has been snuggled into my lap at my desk, under my pull out slider for the key board. Usually with one of my legs curled under the other to support his head. He was smaller. I just couldn't see it. Odd. Maybe that's why my little slugger is still wearing newborn clothing?

OT & SLP & The Dog With Fleas

I wrote to our SC at RC to ask about getting OT and SLP for Jack - er - William. I'd gone rounds with his doctor Tuesday trying to get him to write something on paper so that RC would consider it. If I get a written request from his doctor and RC denies it, then I have a foundation for appeal. I can argue my request and quite possibly win. But this doctor insists that "There is no evidence that SLP before 18 months is of any benefit. And if he is already getting PT that is enough. The RC will determine what he needs." And here I thought that his doctor was supposed to do that? Well - not this particular doctor, no. I argued repeatedly that "The Down syndrome community advocates..." to which he interrupted every time and said, "The Down syndrome community are not the experts. The medical community are the experts!" Oh really. A massive group of people dedicated to finding the best therapies for their children with Down syndrome are not the experts? On what flipping planet??? I argued that there were numerous studies that prove that many of the problems and pathologies of the mouth and structures of the mouth associated with children with Down syndrome are developed during the early months and that every measure should be taken for prevention because extensive therapy later cannot undo the learned behaviors completely, that waiting until William is 18 months old will be like trying to unring the bell. He wouldn't budge. He did say he'd write a referral for Will for their speech clinic, but he doubted they would even consider seeing him before he was 6 months old. Once I got out to the car I noticed that of the four recommendations he wrote, #3 for speech was crossed out. Obliterated from the page. Ass.

#1 was that I start feeding Jack cereal. And it was his answer to the fact that now that Jack has been switched to a soy formula his tummy is much less gassy but now he's constipated. His answer was to feed Jack 1 ounce of diluted fruit juice daily and start cereal. I said that he was unable to hold his head up on his own yet, that I didn't think he could eat anything safely yet. He said "It does not matter that the baby does not hold his head up. Feed him cereal." Yeah...that's going to happen. NOT! He'd asked if I was giving Jack any kind of medication. I told him I was giving him simethicone for his gas, infant simethicone. "Stop that. It is not recommended. There is no proof that it helps with gas. It causes seizures in babies." I also said I was giving him 1/4 of an infant suppository every few days so he could poop. He said, "Stop that. It is not recommended. There is no proof that it helps babies poop." I swear I was waiting for him to say it causes seizures in babies. I said that I only gave him one quarter and that it stimulated his bowel enough that he pooped it out with a rope of stool within seconds. "Feed him cereal." I thought about going down the road of Celiac disease, common with Ds, with the cereal, but why bother? This doctor does not want a mom who knows anything or questions anything. He wants a mom to listen and do what she's told no matter if it flies in the face of good judgement.

#2 on the list was for an opthamology referral. I'd asked him to check Jack's nystagmus 2 months ago. He gave one attempt and gave up. Today he could see it and wrote for a referral. Wow...no arguing required. This guy must be a real peach to work with.

#4 on the list was for cardiology. He was pissed that we hadn't gotten Jack's echocardiogram in January, but I said we didn't have $1,500.00 laying around to pay for it. He said "The baby should have medi-cal because he has Down syndrome." I said that it hadn't been processed yet. He said, "That does not matter. It is your baby. It is your responsibility. You have to find the money." Or what, it will cause seizures in babies? "Maybe you can give it to us?" No - I didn't say that, but I wanted to. This doctor wants to do an echo because he cannot hear a murmur. He wants to be sure that he cannot hear it because there is not a defect so gapingly large that it doesn't create a murmur. I personally do not believe Jack needs his heart poked at. A cardiac defect too large to be heard would certainly show itself in some sort of circulatory compromise with the screaming hissy fit wailing Jack did the whole time the doctor examined him. He was seen by a neonatal cardiologist at birth. He did a Doppler color flow study, an EKG and an echocardiogram. There were a few issues with Jacks heart. The Biggest of the small issues was a VSD. I didn't even know about the other issues until I got Jack's medical records a few days ago. They were too small to mention. The neonatal cardiologist said he also could not appreciate a murmur because it was so small and would likely close within a few days. I said all this to Dr M, but he insists that it gets done. It's a terrible waste of resources. A VSD doesn't suddenly get huge. Especially in the absence of some sort of circulatory compromise. What do I know? I'm just a nurse.

I did tell the doctor that it frustrated the crap out of me that I've done all this research to do what's best for my baby and he just brushes it all aside like so much nonsense. "You are not the expert. Neither is your Down syndrome community." What ever. I did say in a previous post that I would let that dog lie with it's fleas, but I finally felt like venting. Don't even get me started on his views of our with holding immunizations...

What led to all this outpouring of pent up frustration, rage and steam? It was Kimmie's email from RC. She said she'd put the authorizations in today for OT and SLP! He should start those services on April 15th! Yeah Kimmie!

One Year Ago

One year ago today, The Beloved and I found out we were expecting a new baby. One year ago today, I finally mustered the courage to do a pee test. I couldn't bring myself to do it the day before, because April 1st 2007 was the day we found out we were expecting Hannah Marie. Hannah's life was so very brief, and yet I find myself still thinking about her and writing about her. It's as if she is still with me. And really, she always will be. And being part of me, she is of course, part of William. Sweet Little William, who is at this moment enjoying a rare snooze on his tummy, because he's only allowed to tummy snooze while I am awake and diligently watching him.

On that long ago day, My Love had asked me repeatedly what was wrong, what was on my mind, why was I so distracted? I'd placated him for as long as I could, but when The Littles were out of the room I finally had to spill. So I left the room and came back with the pee-sticks. And burst into tears of outright despair. I fell onto the couch in a sobbing heap. Life at that point was threatening to bowl me over. I won't go into all the sordid details, but I was a wreck. And pregnant. I got over the 'wreck' state and started looking forward to this new miracle growing inside me. Had I spent Hannah's entire time with me in a wrecked state, I'd forever be tormented with guilt by her eventual loss.

So it's funny to me that one year ago today, when we found ourselves 'in the family way' again, there was none of that despair. There was concern of course, but there was also wonder. Followed promptly by that silent innate knowledge that this baby was holding a secret. And that he was meant to be. Underneath all the worry, the initial distress with the Ds diagnosis, my constant nagging fear that we would lose him too...there was still wonder. And wonder is such a beautiful gift. My sweet Little Jax. I find this baby so absolutely adorable. Because he is adorable. That he is ours is just a little piece of Heaven! And I am still filled with wonder for him. I wonder when he will say "Ma-Ma-Ma" the first time. I wonder when he will walk. I wonder what he will be when he grows up. I wonder what he dreams about. I wonder what he's saying when he babbles at his toys. Yes, the world is still so filled with wonder...