Hanukah is here!!!

As we start the celebration for Hanukah I'm reminded of the great joys in my life. This year I'm celebrating life, love & happiness. I'm celebrating my husband, my children, our family and all things good.

Happy Hanukkah to everyone.


We started our celebration by making latkes for Meredith's school. Meredith helped to make them and Sean watched on. We all had a good time. We brought them along with some gelt and the latkes were a huge hit. Even kids who eat nothing, my child included, ate them.




 






























After Meredith's nap we made a menorah to hang on our door. I think this is an awesome tradition of making holiday crafts that just kind of happened. Aren't those the best kind of traditions? Ya know the ones that you don't even realize are happening. Meredith saw the menorah on the table and asked us when we would make a "norah". I guess she's gotten used to our holiday crafts. So after some quick googling and a mix & match session of various crafts, a menorah is made.





 










 
















Ema & Epa came over to light the candles and have dinner. Like the good Jews we are, we had chinese food.




 

Pictures & Updates

Can you believe that my baby, who was diagnosed with "down's disease" and "Failure to Thrive" gained 8oz in a week? Good weight gained is defined as gaining an ounce a day. I'd say that Sean fits that bill. Take that Dr. F. And he made that gain with a taste of cereal. Literally a taste and no formula. Woot woot!

We decided to start him on cereal. It's really hit or miss at this point. Some days he doesn't get any at all. We're doing it more for a taste and to get his tongue moving. He also got a taste of some banana. Mmmmmm My boy loves to eat. I finally got an eater. Yay!!




 












Sean's feeding therapist gave him a knobby tube to chew on & he loves this thing. I've ordered a few for him. He's now able to bring things up with one hand, grab it with the other & then stick it in his mouth. It's amazing to watch him. Some days he's not real interested in doing anything except laying like a latke, but then there are others where he's so engaged. I just don't get it.




 









Lately I have been so discouraged by his delays. It's really hard for me to remember what Meredith was doing at Sean's age. And it's so hard to know I'm working so hard to help him keep up and I see no progress. Well that's not true. I do see progress, but it's soooooooooooo slow. I'm also at a loss for what's actually helping him. Is he doing something simply because he suddenly was able to or because of my hard work? Probably both, but................

We went to PA this passed weekend. It was nice to see some friends. It was also nice to go out without the kids. The only thing that stunk was that Meredith was traumatized that we left and we paid for it the rest of the weekend.

That coupled with hosting Thanksgiving dinner and our bout with food poisoning the weekend before was not a good mix. I was beyond exhausted and almost delusional by Saturday night.

Saturday morning we had brunch with friends and the kids got to see each other. We went to the same cafe we'd been to last summer, but being inside wasn't the most conducive to allowing the kids to run around. Oh well. Live & learn. Next time we get together during the winter we'll have to do it at someone's house so the kids can run around like caged tigers.



Then we shopped & by Saturday night I crashed. I went to sleep early & Rob was kind enough to let me sleep when the kids got up. I really needed it.

Sunday we woke up and played with the little people that ema has in her house from when Rob & his brother were small.



Then I went for a walk with Meredith. I can't believe how big she's getting. She's such a little girl now and not a baby at all. She talked about the leaves, trees, clouds, fish and about how sharks live in the ocean. She told me that there were no oceans by ema's house. And she was right. There are no oceans in the mountain. When did my kid get so smart?

We kicked rocks and picked up leaves. We watched the water in the stream go by and we talked about the animals that live on the mountain. We talked about the things we'd do during the upcoming week and then we walked back to the house and got ready to come home. We can't wait for our friends to come to Brooklyn so we can show them our stomping grounds.




 

Happy Thanksgiving

We wish everyone a happy, healthy and safe Thanksgiving.



 

Wordfull Wordless Wednesday

On the eve of Thanksgiving I'm reminded to give thanks for the life I live and all the it encompasses. Of course I'm thankful to have a loving family (husband, kids, dogs). I'm thankful for a loving extended family. I'm thankful for my treasured friends. I'm thankful for my relatively good health & the health of those I care about.

But what I am most thankful for is the ability to be able to feel thankful. I'm grateful I am a person who is able to feel love and happiness. I am able to feel hurt and disappointment. And even though the bad feelings come along with the good, I am still grateful I am able to feel. Hell if it weren't for the bad feelings I couldn't be thankful to feel the good ones.

I have been on an incredible journey through life so far and for that I am grateful. I have come out happier, wiser, more loving, more tolerant, more accepting, more ambitious and more purposeful. This year I can't ask for more.

Have a wonderful, safe & happy Thanksgiving.

And just because I think they're cute.........

Updates Updates..... Read all about it!

We went to the pediatric GI specialist, Dr. F, last Tuesday. The verdict is that Sean definitely had gerd. We knew that. She changed his medication from Zantac to Prevacid 2x a day.

She also said that he's underweight for his height. He's 10lbs 13oz and 24" long. According to her chart, for the average child with 46 chromosomes, he should be 13lbs. She seemed to focus more on that than anything else. She wants us to give him breastmilk in a bottle 2-3 times a day and put 1/2 a scoop of dry powdered formula in for extra calories. Then she suggested we use nutramigen as our formula because we have a strong familial allergy to penicillin.

Now... if you've never had the pleasure (insert eye roll here) of "meeting" nutramigen, consider yourself as lucky as can be. This stuff smells like ass. Nope.... scratch that. It smells like industrial bug spray. And the cost of this stuff is insane. I think I saw a sign once that read "rollback...... 1 arm & 1 leg" for it. Amazon is selling a case of 6 cans of dry formula (8oz each) for $130. Insanity.

She also suggested we add rice cereal to his bottles to thicken them. Thus helping things to stay in his stomach and prevent the reflux.

I have several problems with both of these things. I don't have a problem adding formula to Sean's bottles if he NEEDS it. I'm not convinced he needs it. Especially since it wasn't related to the gerd. I'm not worried about his weight. We're not big people and Meredith was tiny too. She was 11lbs & some change at 4 mos old. Not to mention that I have always read that breastfed babies tend to be a little smaller. He had/has a heart condition. And..... most importantly he has down syndrome. People with down syndrome tend to be smaller statured than most 46 chromosome folks.

Maybe she thinks we all have the salaries of doctors? Maybe she thinks we can all afford to pay up the ying yang for formula when there's no real reason. I mean if Sean had shown that he had allergies, then fine. We do what we have to do. But really... if he's allergic to lactose or milk proteins or whatever will it really matter what kind of formula he's getting if it's all still in my milk? So why do I have to sign over my 1st born as payment for formula he doesn't need?

Studies have shown that adding rice cereal to babies' bottles increases the chances that as the child grows older, he will be overweight. People with down syndrome already have a higher chance of being overweight. Do I need to increase his chances? Won't being on medication help keep his gerd under control?

And furthermore, won't regulating his medications and keeping his gerd at bay help him to put on weight? Don't babies self regulate? Don't they know when they need to grow? Isn't that the whole idea behind a growth spurt? Babies grow at their own rates. Why do I need to modify the way Sean's body grows?

We decided not to make any decisions until we spoke to Dr. D, the pediatrician, about it. On Thursday we did just that. He said that yes Sean is underweight, but not severely. He also said being that Sean is already getting at least 1 bottle a day, it wouldn't hurt to add a 2nd and add the formula powder. Increasing his calories wouldn't harm him in any way since the 1/2 scoop isn't adding that many calories (50 cal each 1/2 scoop). If after a couple of weeks we saw no improvement or still felt it was unnecessary, then we should stop. Nutramigen wouldn't hurt him, but it wasn't necessary. He said that if we felt Sean was ready, we could give him cereal with a spoon and he saw no reason to wait. He suggested we start with cereal 2x a day to maximize the gerd benefit. Tomorrow Sean's feeding therapist is coming and we'll ask her if she thinks he's ready for cereal. And then the nurses gave us a case & a half of the nutramigen. Not to shabby.

He got his RSV vaccine and polio and we go back on the Friday after Thanksgiving for 2 more shots. I don't like to give more than 2 vaccines at any pedi visit. I just think it's unnecessary. So we go back more often, but at least if Sean has a reaction we don't have to sift through a rolodex full of vaccines to figure out which one did it.

We go back to Dr. F in 6 weeks and Dr. D in 4 unless of course we have issues or questions.

In terms of Sean's development, Dr. D and his nurse said that we should think about it like a baby who was 4 weeks premature. That's how delayed Sean is. While it's a little easier to understand, it doesn't make me feel any better.

We had a meeting to modify Sean's IFSP with early intervention. He'll now be getting physical & occupational therapies. We're just waiting for the city stamp of approval so we can start. I'll be calling the woman from quality control to see if we can get things moving sooner. She's such a nice woman & I'm so lucky to have been put in contact with her.

Today we ventured to the mall to see Santa. We wanted to know if he spoke to Hanukkah Harry. Ya know so he could pass on the message for us. Turns out he does speak to Hanukkah Harry. Lucky us. Meredith would have no part of sitting on his lap. NONE. I was so pissed. I don't care if I get a crying picture. I just want a damn picture. Nope. I'm going to bring her back when she's fully rested. At least I have a picture of 1 of them right?



Meredith did ride the train. She enjoyed that & told me all about it. I love that she can whole conversations. She tells me what she's learned at school and what she's done throughout the day. It doesn't matter that I was there with her. She tells me her stories like I wasn't there. I love it!



And of course some random pictures of my little man.

Unsung Heroes

Have you ever thought about who your heroes are? Until recently I never really had. When I think about the events of my life recently 4 people really come to my mind. They would be Rob, Meredith, Sean & Eunice C., the cicu nurse that cared for Sean.

The reason I started thinking about it was because we started to get the bills from Columbia for Sean's surgery. I started thinking about what I was actually being charged for. Now... his surgeon is worth his weight in gold as far as I'm concerned. I would've given that man my left leg to ensure Sean's surgery went well & the outcome good. And it went well & the outcome has been nothing short of a miracle. But from a surgeon of Dr. Bacha's caliber, I'd expect that.

One of the bills we received was for the dr that called Sean "a downs". Her exact words, "He should go on cpap because he's a downs". She billed our insurance company $3,800 per day. I almost had a stroke. What the hell did she actually do? I think I saw her maybe 4 times. I mean I saw her on the floor, but I don't think I saw her near Sean, but 4 times. Eunice was with Sean constantly. She was in his room making sure he wasn't bleeding to much. She was there making sure the new resident didn't prescribe the wrong meds at the wrong intervals. She was there telling us that Sean would be ok. She treated Sean as an individual person. Not as a typical kid with down syndrome like so many other people had. She actually listened to us as his parents and understood that I would do whatever I had to do in order to make sure my baby was ok. She made us laugh and never made us feel stupid for crying. She told us everything would be ok. I don't know that she actually believed it would be right after his surgery, but she made us believe it. She made us laugh when I was hooked up to the moo machine and she had us rolling with laughter when Sean cleared the whole room after he pooped. She made us feel at home in the cicu. It takes a very special kind of woman with a very special dedication to her patients to be able to make someone feel at home on the cicu.

Eunice has an amazing quality about her. To us, she was strong & sincere. She didn't take anyone's bullshit and everyone respected her. You know why? Because she knew & knows what she's doing. She's my unsung hero. I have no idea how many lives she has touched in her many years in practice as a nurse. I have no idea how many lives she will touch. But what I do know is that without her my son would never have done as well as he did after his surgery. It wouldn't have mattered what surgeon performed the surgery. Without Eunice Sean, nor his parents, would've fared any better. I hope she knows that we have not forgotten about her Yankees tix.

That's not to say that the drs don't have their merit. They do, but not $3800 per day's worth. Especially when they're not doing much.

Here we are 6 weeks post op and Sean is doing amazingly well. There are some days I wonder just how uncomfy he is in certain positions because of his breastbone, but he's an amazing little boy with a lot of will.

His scar hasn't changed much in the last couple of week, but I don't think I expect it to for quite some time. When he's older maybe I'll use some mederma to lessen it's appearance. But then again.... maybe I'll leave him with his reminder of his journey.
















He's holding his head up again. THANK GOD!!!! He's holding it up the way he should be. And he's sitting so nicely in his bumbo seat. After about 10 minutes he starts to get tired and his head starts to hang. Meredith is always right there to pick it back up for him.



I evicted most of Meredith's toys to her room finally. I put them in the armoire. When I showed it to her, the reaction couldn't have been planned better.



We've made a new friend in the neighborhood. We met on a message board for parents of children with down syndrome. I put the call out for folks in the city, like the bat signal, and she answered. It turns out she lives 10 blocks away.

She & her boyfriend have a 3 year old with down syndrome. Her son was so cute. We went to the playground and apparently leaves are the way to go. Meredith showed Seth how to throw leaves and before we knew it there was a party going on. 2 more kids joined in the fun.

























And here are some pictures of Rob & me taken by Suzanna Finley (www.suzannafinley.com). Throughout our journey so far, we've come out happy. A hell of a lot more tired, but happy. I look at my husband each day and see how hard he tries to make me happy and help me smooth out the wrinkles in my day and I just melt. I fall more in love with my husband everyday. He is my hero, but I sing his praises everyday.
















And some recent pictures of the mini pests. They're my heroes too. They know how to melt my heart in ways I never imagined possible.

Through my loneliness; this made me laugh