Today in the mail, Aubrey got a pair of sandals from one of her Grandma's. We love little packages (who doesn't),and if I forget that they are coming EVEN BETTER, because then it is a surprise for everyone and we eagerly rip it open to discover all the surprises that it holds.
Poor Woody got left out, but I got some coupons and a pattern!
And the girls each got shoes:)
As you can see, these are closer to fitting her than Woody's were!
Still got some growing to do before we can officially wear them, but she couldn't get them off,
so good practice shoes!
She did not want to stand up with them on! This was a very quick photo op and then she was down.
But like all girls, she thinks these shoes are SO PRETTY!
I can see the lifetime of shoes in her closet already.
She's gonna be a shoe lover...like all the rest of us!
For those who were wondering about the Mediterranean Yogurt (along with me:) I have found it! You can go to their website and search under their specialty products. Also you can locate a store in your area that carries it by clicking on the "Get Fresh" tab and then entering your state in the lower left corner. I am able to find it locally at "Sprouts Farmers Market" or at "Whole Foods". I'm hoping to get some today. 60 calories in just 2 tbls would be so much easier than 1/2 cup of yogurt! Hope this helps! I'll let you know how this goes! I've heard it is super yummy...not that you will find me eating it at that calorie cost!
Just a quick update on today. She had her ECI 6 month review with all her teachers today. It was so very nice! I was kind of dreading the developmental placement stuff and they didn't do any of that today! It was a review of her goals...setting NEW ones and making sure that her teachers are coming often enough or too much. Most things stayed the same, but we did some checking off of her goals and added new ones. I am just beaming with pride for that little peanut and she showed off all her skills to the teachers today. It was fun to let the nutritionist see a different side of Aubrey...the playful smiling girl that she is:)
She also got weighed today and she is back up over 16lbs. We are thankful for all your plump prayers. Not sure what happened last week, but she is back to where she was last month, so that is good and we are going to continue with our higher calories for now.
The Coconut milk really does look like glue when you open it up and it is that thick too! I had to put it into a shaker cup to get it all mixed back together and then I portioned it out into 4oz bottles (one each day). I tried it alone...I tried it in a smoothie...and the only way that she would drink it was when I mixed it with the chocolate pediasure! It is like a really thick milk shake so her cheeks are getting a work out, but she drinks it!
We are also doing the bananas, avocados, and I have been doing a lot of vanilla yogurt and oatmeal and we tried Hummus. She likes the spicy roasted red pepper flavor! They had samples at Costco and she liked it so I went with that over the plain. I have really been watching her calories at each meal/snack and making sure that she is getting between 150-200 at each sit down meal and then she also has at least 1-2 snacks and is nursing. So it seems to be working. We are allowed to back off just a bit this week, and then she will be weighed again next Monday and we will make a new plan.
Hope that this helps others who are struggling to grow and gain. She also told me about a new yogurt, but I'll have to get he name again because I forgot, but I think it was like Greek, but Mediterranean or something, but had a really high calorie count as well. I'll post after I ask her again, but I remember she said that it was available at Whole Foods or World Market.
She also went to the Pulminologist for a random check up and came away with bad news. Her lungs are no longer clear...and so we are back up to 5 treatments a day and they put her on antibiotics. He said that if you are runny nose sick for more than 10 days, the likelyhood that it will go away on it's own for her is slim to none and that she is probably on her spiral down. Her RSV test came back negative, but they sent it out for the long test along with other cultures that should be back on Friday. We aren't scheduled for another visit for three months, but I assured the secretary that she would likely see us before that! Remember, Aubrey does NOTHING by the book...and we love her for being SO individual:)
So after last weeks drama of the weight loss, I failed to update on her therapy drama!
Since Christmas, Aubrey has decided that she doesn't like her PT teacher. I don't know why, can't pin my finger on it. The only think I can think of is that she was the first teacher we saw after her hospital stay and she had to work and it scared her all over again...don't know...but she cries a lot during her therapy now and I feel awful, but she needs the work, so we try to get through it. I even gave her a couple M & M's one day. She couldn't even eat them because she was so worked up and almost hysterical! Anyone have suggestions out there?
Her Developmental Therapist was here on Friday and we did a lot of work on the cruising thing (she is anti-crawling even though she can do it and screams when we try to correct her). It took her almost 30 minutes and a lot of help from both of us, but she went all the way around the coffee table holding onto her music table while I inched it away from her. There was "complaining" but as long as we distracted her with goldfish, she was good. And that way we are replacing any calories she is burning, while she is burning them!
Liz said that there was nothing keeping her from walking but herself. I don't REALLY believe that, but I agree that Aubrey is a little stubborn. And if she falls or gets the least bit unstable, OH MAN THE TEARS AND CLINGING. She doesn't like to try new things or unfamiliar things. So I recommitted to pushing her to do things and getting her really familiar with things that we use for therapy. We do short spurts of "work" throughout the day and it seems to work much better than spending 30 minutes all at once "working".
And after a weekend of work, she can get around the coffee table (without distraction) in under 3 minutes! It's all about pushing her and just letting her do it in her own way and time...and treats help too:) Enjoy the new video!
*Lily-the rest of Aubrey's videos that you like to watch over and over during the day are all the way at the bottom of the page. Just tell Mommy to scroll down!
So, I realized that I just posted the giveaway yesterday and it is spring break time or people might be out of town or too busy to read blogs!!! So I decided that to be fair, we should extend the giveaway until Tuesday morning. It is a busy day for us, but I will try to get the winners out in the morning. We have two long appointments that day, so if it isn't right away in the morning, it will be late afternoon.
We have been SEW busy around here lately and I feel so behind on my blog. We were busy sewing though! I started an Etsy shop last month I have been sewing for the girls too!
I love when the girls hear the whirl of the machine going and they come running to help:) Kate, my kindergartener, even left me some notes on my machine one day so that when she is at school, I will think of her helping me. She did it in secret and then taped them to my machine. I found them the next day and they bring a smile to my face every time I sit down.
"I love you Mommy. I love you Daddy." (for those who need some translation:)
Aubrey is in charge of ribbon organization and also in charge of opening and closing the drawer over...and over...and over...and over!
Ella is in charge of button organization. Quite frequently she will just dump the all out and reorganize them. She is also very good at taking out pins when I have stitched. She is my helper most days and LOVES having sewing jobs.
Kate and Alice are to the point now at 5 and 7 where they can actually sew,
so we had our first lesson this week.
They are both working on a very simple piece and will show you when it is done:)
Now for the GIVEAWAY...Today is my 100th post and I always knew that I wanted to do something special for 100. I had thought about a lot of things, but in the end, I wanted to give back. We have always had a lot of love and support as we walk through this new road and Down syndrome, but it has been through this blog that we have gotten the best advice. YOU have celebrated with us and you have prayed with us. You give such wonderful suggestions and advice and I'm wishing we had been around from the start so that all the hardships we experienced in the first year, could have had help from YOU.
SEW, I am giving away some of the sample items that I have made for my Etsy Shop:
I am giving away ONE DIAPER KEEPER. This is a way to keep a travel wipes container and a couple diapers organized and handy in your bag or purse. (Woody likes it because he can just easily grab what he needs instead of the whole bag or digging through to get what he needs:) Even though we have 4 girls and LOADS of pink, my keeper is neutral (Disney) just for him! And TWO TAGS: Some use them on luggage/diaper bags/backpacks/swim bags or to carry their library card and they hang it on their library bag! I just got a custom order, for someone who is going to use them as place cards at the table at her wedding! Such smart people out their. Never would have thought of the library card (thanks Cass) or the place cards. You can enter to win both a diaper keeper and luggage tag. Just leave separate comments. Let me know in the comment which you would pick if you win and a way to contact you.
Comment #1- I would pick the Baseball diaper keeper. email@example.com
Comment #2- I would like to win the Hot Dots Owl. firstname.lastname@example.org
Winners will be chosen on Monday morning, March 15th, at 7:00AM. CST
EVERYONE IS A WINNER. If you are not chosen as a winner of a free item, but you left a comment to win, I will give you FREE shipping on any order from my store that is ordered before Friday, March 19th at 5:00PM CST
So, yesterday at the doctor she looked to have lost weight this past month and so our wonderful nutritionist (through ECI) squeezed in a visit to our house this afternoon. Three weeks ago, Mrs. Suzanne weighed her at 16lbs 3oz. Today she was 15lbs. 12oz. (insert sad Mommy face here:(
It is puzzling and we haven't seen any difference in her eating habits or anything else...except that she is scooting around a bit more now and must be burning more calories and not eating enough to keep up. (too bad we don't all have this problem:)
The Plan: I told her that we had tried the Pediasure that the pediatrition had sent home with us. (by the way...the kid won't drink milk, but when given chocolate pediasure, she sucks down the whole cup full-a true CHOCOHOLIC) And then also offered other suggestions that my wonderful readers had suggested. Mrs. Suzanne said that while more chocolate layer cake and icecream would be yummy...they would not put on good weight and should be avoided. She also told us that while woodchips are VERY fiberous, they are not very caloric and should also be avoided. (Aubrey was upset by this.)
Her first recommendation is to offer Aubrey Coconut Milk. It is found in a can in the Asian section of most grocery stores and she said that it isn't too expensive, but I'm not sure what that means. And this is why:
It offers 120 calories for 2oz.
Unlike other options, it is natural and only has naturally occuring sugar, versus lots of added sugar.
It is a medium chain trigliceride, so it is easily digested and absorbed.
It is a very mild flavor and she said most kids will drink it.
She has never had anyone that has a reaction to it (allergy) or problems (constipation etc.).
It can be mixed into things or made into a smoothie or drunk by itself. (Aubrey would probably want the chocolate version or at least a chocolate smoothie of the stuff-instead of my idea to mix it into her morning oatmeal:)
She would like to see Aubrey take 4-6 oz a day. She needs about 700 calories a day, so this would put her at at 30-50% for the day and the rest from food and breast milk.
Her second recommendation is to go back to more high calorie/fat foods like bananas, avacados, mangos and sweet potatoes.
Her third recommendation would be to try the Carnation Instant Breakfast Drink Mix. Each packet is for 8oz of liquid and she recommended using 4oz coconut milk and 4oz whole milk, but she did say it is hard to find in vanilla and we would likely end up with chocolate. This option would be 444 calories per 8oz, but again this has sugars.
OUR plan: We are going to start off with the coconut milk plain-offered like milk or in a fruit smoothie and do the bananas, avacados and sweet potatoes. We will let you know how it goes. Aubrey says she will cut back on woodchips too:(
Aubrey has her 6 month ECI review next week and so we will have her weighed and measured next Tuesday and then Suzanne will come the following week as well to keep on top of this new development.
This all takes me back to those early days, before surgery, when we kept such careful track of all the calories in and out, right down to the cc's! We mixed and measured and felt like chemists most days. It is emotional to say the least. But it is sooooo minor in the grand scheme of things. She is a healthy little girl and has just backed up a little. She'll get going forward soon and this will be something we laugh about someday.
There was talk last month that she might get to 20lbs for her 2nd birthday and FINALLY get out of the baby seat AND get to turn around. Maybe that scared her a bit? Or maybe her therapist have been working her too hard? It's always nice to blame someone else. We hope that it is nothing more and our professional team has given us no reason to worry beyond "just a little set back."
We appreciate all the "Plump Prayers" being sent up on her behalf and we will keep you posted as to what she is willing to drink and what works, so that others may benefit from our experience.
It's Raining...It's Pouring...My new raincoat isn't boring!
See...it's got buttons...
and over here it says "POOH"...
And it has two little pockets...and I need these just like the ones I have in my jeans, cause I just love putting my hands in my pockets!
So we headed off to the doctor in the rain today. Not many things surprise me about the regular doctor visits. It is mostly a time to update him on all her other appointments and then go over the skills that she has (and doesn't) and then he reminds us about summer and sunscreen and baby proofing and stuff. They are almost always "feel good" visits these days and so we like these very much.
Today...through me for a loop. They weighed her and she was 15lbs. 13oz.! 3 weeks ago she had been 16lbs 3oz! So I was shocked! He recommended calling the nutritionist and seeing what we should do and gave us some pedisure. He thought that maybe (since she won't drink milk) that we could use that instead of milk for smoothies to get her extra calories. He is puzzled because she really is a great eater and eats just about anything. We just need to maybe choose higher calorie foods.
I have always tried to teach my kids a good balance between healthy and nutritious and "the good stuff". It has been a challenge to create healthy habits for Aubrey and feeding her what will help her grow. She loves smoothies, but I have really backed off, because that is ALL she wants and food goes out the window for her. I don't want to start up with the smoothies all the time again and have her stop eating the good stuff all together. Right now she has such a good balance of fruit and veggies and meats and grains. Anyone have suggestions or similar troubles?
I am hoping that our nutritionist will call back or make a special trip out this week to do measurements again and make sure all this worry is worth it. She is usually really good about the balance of healthy versus gain weight foods, too. A reason why we really like her in the first place...oh yeah, and she is the mother of four beautiful (grown) girls just like me!
Otherwise Aubrey is fine and healthy. A little congested this weekend, but he said her lungs sounded good, so no worries, probably just new teeth. Wonder where they will pop up!
I asked about a vision test, and since they start those routinely at 2 and she seems to see fine, we would just do it in September with her yearly visit and take it from there.
It was a wonderful family day today. And we spent a fun afternoon at the park. It was a beautiful (windy) day, but I love March. There is just something that is so nice about it. The weather is getting warmer (here at least) and things are turning green again or sprouting and it seams like it is time for more things that are spring like. I just love it!
Aubrey was riding in her car, which is how we usually go to the park with her and she loves it!
Even able to finally beep the horn by herself!
Ella on her bike. She doesn't need to be first on the way to the park, but she CANNOT be last. And since Aubrey doesn't mind, me and her are usually bringing up the rear.
Alice...just hanging out.
And Kate hanging out.
(they kind of know the deal...
that Mom wants a few "photos" at the park...so pose and get it over with:)
Hmmmmmmmm...what is this stuff...
Feels kind of funny....
Let me get a big handful...
And taste it!
Hey it's not so bad. I think I need a bigger bite!
You guys play...I'm just gonna keep shoveling these things in!
I JUST LOOOOOOOOOOVE WOODCHIPS!!!
"Hey...I'm over here!"
I love my daddy so much!
Alice is our courageous one!
Kate loves to hang out!
Playing MONSTER TAG. Alice was "it" and was the chaser!
Hey...you guys playing games without me?
Oh...never mind...they got more woodchips over here. I'll stick with these!
Slide...I don't know about this one Mom...
It's a long way down...
This is when she started shaking, so I rescued her. Maybe we should have slide therapy one day and head down to the park for physical therapy.
Hope that you all are having a wonderful weekend too.