Where to begin....

We learned at Meredith's 4 year old well visit with the pediatrician that she hasn't grown any taller in the passed year. On average children grow 2-4 inches a year. When they don't, it raises some red flags. Meredith is now being followed by the endocrinologist. She's had a bone plate scan which has come back normal. Now we must figure out a way to get Lady M to have her blood taken.

We tried a couple weeks ago with the lab at CMC Huntersville, but.... well... lets just say it didn't go well. And not because of Meredith who was as perfect as any 4 year can & would be.

Meredith is also eating some veggies (be still my beating heart) and steak. Yes.... you read that right. Steak.

Sean on the other hand has grown an amazing 3-3.5 inches in the last 7 mos. And that's not including the latest unmeasured (as of yet) growth spurt he's had. He went from a cool 18-24 month pant size to a whopping 2T. He's also wearing 2t shirts. Except for his short arms (no gorillas here), he could easily wear a 3t shirt. CRAZY!!

Sean's TSH levels have been normal. Thank goodness.

The last few months have been hard on Sean though. He's had these awful recurrent ear infections & sinus infections. He's missed more play dates and such because of them.

He's now been on more antibiotics than I am comfy with and we've started a new probiotic. We've also upped the vitamin D and a couple other of his supplements in the hopes of helping his body fight the infection.

We also had some immunoglobulin (antibodies) blood tests done. They've shown that his IgG & IgM are both within normal limits, but to close for comfort to too low. SO we're going to the immunologist. His nuetrophils & tcells are both normal. So his immune system SHOULD be able to fight the infection. Especially with the antibiotics.

So why isn't his body fighting the infections? Why aren't the antibiotics working? Is it a resistant bacteria?

What we know right now is that Sean does have a penicillin resistant bacteria. It's not the end of the world, but at least we have somewhat of an answer as to why his symptoms keep coming back. I have my theories as to why it's happening in the first place.

We go back to Sean's regular ENT on December 3 (Monday) to see what our next step is. We know that antibiotics are not working. Even Suprax which is the preferred drug for this bacteria.

What else are my kids doing?

Well Meredith is reading sight words. She's able to sound out letters. You say cat and she immediately sounds out the "c" sound and says "c". She's writing her numbers & letters. She's really amazing.

Sean is talking & communicating so much!!! I can't believe how much he relates to his world in so many typical ways. I'll ask a question and he'll answer. He recognizes that he can't say certain things like "hungry". If we're not paying attention to his cues, he'll go over to his seat & pull it out.

He's potty training. Yes. My 2 year old boy is potty training. I never thought it would start at 2 because he's a boy. I really didn't think it would start at 2 because he has down syndrome. He recognizes when he's pooped and will come over & say "Ooooooooohhhhhh". Then the stench smacks you in the face.

He'll grab his diaper & look down when he's peeing. He's gone on the potty a couple of times, but I think he's afraid of it. He's a little to skinny to sit on it alone.

And if you ask really nicely I'll tell you our awesomely funny 1st time on the potty story.

Both kids are discovering that the other one is actually fun to have around. HA! They can actually play games now that Sean follows Lady M's directions. Did you see my eye roll there?

Sean started gymnastics this morning. Rob was able to take him and said he did really well. He needed minimal assistance and did really well until Mr. Frank tried to have him do a somersault.

We had Sean's transition to CMS (school system) meeting this morning. There were some good things, but there were also some things I wasn't so thrilled with. I have a few months before I have to really think about it. For now I'm going to live in ignorant bliss that my baby is going to be 3 years old.

Daily Adventures of the Scotty Rocks

How's that for a title to an update?

What have we been up to? Not much actually. The kids are silly.

And doing well in school.

Walk for Wishes fundraiser. 

And Sean doing the Hokey Pokey.

Seriously.... there's one at every party

Meredith is doing so well at gymnastics. It's like she was born to be an olympian.

Made pilgrim hats at school.

Helping mommy put the couch together. Apparently he felt I was doing it wrong. By the way.... we got a new couch from IKEA. YAY!! The cover comes off so I can clean it. FABULOUS!

Check out those feet. They grew a whole shoe size recently. Holy growth spurt. 

All in all we've been pretty boring. I'll have a factual update soon. You know filled with stats & medical and therapeutic updates. We have a few. Sean & Meredith are doing phenomenal things :)

I know the pics aren't good quality, but I didn't have my camera. I need to start carrying it around again.

Sean's Update

Sean is flying through special instruction. He knows a lot of his colors, his capital letters and he's starting to really catch onto body parts. We love that his special instructor uses toys we already have & that we all know Sean loves. It helps to keep him focused.

Sean's really catching onto pretend play too. His favorite pretend toy by far is my cell phone. He usually holds it up to his ear backward and babbles into it. I always wonder who he's talking to.

We're still trying to find new ways to get Meredith involved in teaching Sean. We've found that by making it a game & laughing as hard as we possibly can whenever they're happy doing something together works as a great motivator. Sean will do absolutely anything for Meredith. Who knew that my 3 year old was such a glory hog?

Now that Sean is more purposely mobile it has opened up a whole new world for both of them. Sean will follow her anywhere & get into any trouble with her.

Giggle giggle giggle "Seany. Mommy won't see us under here." Giggle giggle giggle

We went to Charlotte to look at houses. He was such an amazing trooper through the whole thing. He's absolutely obsessed with all things airplanes. Maybe he'll be a pilot when he grows up. How cool would that be? He slept most of the way on the plane.

While we were there we had a few adventures. Meredith figured out a new way to torment Sean. SHe holds onto his shoelaces while he tries to get away. She thinks it's hysterical. Him..... not so much.

And yes.... Meredith went on the plane with her Belle dress on.

We saw about 24 houses in 2 days and decided on one in a great community with great people in Cornelius. Amazingly enough, the house we chose wasn't through a realtor. We're so excited. But looking at all those houses really tired Seany out. Poor kid.

We went to Discovery Place because we just needed a little down time. It was really incredible to see how different Sean is compared to just a few months ago. He's more willing to try different things. He's also more willing to be shown how things work & actually demonstrate what he's learned. He's not one to shy away from a little pubic nudity if it means he gets to play a little longer either. Both kids were SOAKED after playing at the water table. The more wet Sean got, the more clothes he lost. Lesson learned. Bring an extra set of clothes for each kid next time we go.

 

It's amazing how someone so little can take up so much room on the king size bed. He earned that room though. 

Now that we're home, the packing is in high gear. The only way I have found to keep the kids from "helping" is to give them their own box to play in while I fill my box. I've also given them crayons to decorate the boxes. 

When we got home we saw an endocrinologist because Sean's TSH was high normal at 5.68 just before we left for Charlotte. Just 2 weeks later it was at 5.54. Sean has been showing some symptoms of hypothyroid. We never had it tested because our pedi assured us that because Sean was still growing taller, it wasn't necessary. Of course now I could kick myself for not asking for it to be tested anyway, but oh well. After discussing the results with Dr. N, Sean is now on 25mcg of Synthroid. Because the thyroid controls & affects so many different things, we chose to not wait to treat him. It's inevitable for Sean regardless of his down syndrome since he has a strong family history of thyroid issues. 

Of course I have been in denial about Sean having yet another illness. He was pulling at his ears & I was just chalking it up to teething. And then it happened. He started coughing and it was really gurgly. Yes that's a real medical term. I waited another day and then when he was gurgly while he laughed, I knew it was time to pay our favorite pediatrician a visit. I swear to you, I see that man more than I see my own husband. Sean had bronchiolitis, free fluid in his lungs and a double ear infection. It wasn't teething. :( He's on steroids, nebulizer & antibiotics. I just want you to know that trying to coordinate synthroid with these other meds is maddening. 

But my poor sick boy needs me to do it so I make it happen. 

Of course through it all he's still the Kamikaze Kid and making my heart stop at the drop of a dime. While talking on the phone with my friend, Sean pushed & walked behind the yellow chair. When he thought he'd reached his destination he started to climb on it. He then realized he was to far from the cabinet and pushed it closer. The fish is in trouble when Sean finally figures out this climbing thing. 

Today is of course Superbowl Sunday. I watch it for the commercials. Sean watches it for the excitement apparently. 

Don't worry, Lady M is going to get her own update. Because they're both doing so many things these days, they each require their own posts. Especially when I take time off. 

So many things.... So little time

My baby girl "graduated" from her first preschool class today. It was so sweet to see her walk up to get her certificate. Of course it was topped off with a resounding "But mommy I can't wait. I have to pee." Oy. Of course I made her wait because I didn't want to interrupt the "ceremony". Thank goodness she's good for at least 20 minutes, if not more, from when she announces "Pee Pee!" Mommy got her moment. 

Sean can now point out noses & mouths. It's very exciting. He can also point out fishies at the aquarium. Now you might be thinking.... "Heeeeelllllooooo. Of course he can point out fish at the aquarium. All he has to do is point in any direction." I'm talking about up close & personal with the tank, points out the fish as they swim by. He likes to lean on the big tanks and watch as the colorful fish swim by.



Sean's speech therapist completed his most recent assessment. To say I'm pleased as punch is an understatement. Now I don't know where we started on the percentage scale. And quite frankly.... I don't care. I prepared myself for Sean to have more of a delay (comparatively) than he has. Sean is officially at an 18% delay across the board. His receptive language is pretty spot on for his age and his expressive language is lagging behind by a couple of weeks. I'm pretty happy with that. Our speech therapist was so happy I was happy. She explained that most parents are afraid when their kids do well because that usually means a reduction in services. I explained to her that while we love her, we'd love nothing more than to not need her services anymore and I intend to celebrate each & every time Sean makes progress toward not needing his therapies. So then she got happy and told me that without my doing what I do with him, he wouldn't be doing as well. That meant a lot to me.

Sean has also passed his hearing test with flying colors. Woot woot! His ear canals are tiny, but look great! And if you knew what kind of ear & sinus issues the poor kid came from, you'd understand how awesome that is.

Meredith's adenoids are smaller. Great news! But..... isn't there always  but? But...... one of my concerns has been confirmed. I've been saying for the last 2 years, since Meredith was taken off the prevacid & zantac, that she still had reflux. The GI dr kept saying that if she did, it wasn't bad enough to warrant medications. At 2 years old, he said that the only way to tell for sure was to sedate her & do an endoscopy. I elected not to sedate her. The ENT stuck a probe up her nose to check out her adenoids and guess what.... no post nasal drip, adenoids look great, but... he saw acid in her throat. Reflux confirmed. No sedation needed and it took a total of 7 seconds. So now Meredith is on zantac. I'm so annoyed. After 3 doses of the zantac Meredith ate 1 donut, 1 cup of chocolate milk, 1 ENTIRE NYC slice of pizza and 1 pb&j. And.... she was asking for more. While I'm thrilled that it looks like she is finally eating well.... with each meal she devours, I get angrier & angrier that my poor princess has been suffering and starving. Ok ok..... we can only move forward right?

Monday the 27th, we go for another check at the cardiologist. I'm sure everything is going to look good.

Wednesday the 29th Sean goes to the orthopedist to get a quick evaluation for some concerns I've had. Nothing majorly exciting.

On the 30th Meredith heads to the pedi to discuss this reflux business.

SO I leave you with the divas and her trusty sidekick.