Lily's World

June 2011

{ July 13, 2011 @ 9:04 pm } · { Monthly slide show }
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Lily is saying more words, taking her Sucraid and therefore eatting more foods. She is a crazy little baby with lots of personality and she is certainly getting a mind of her own. She gets her little feeling hurt and she tatles on anone who is not doing what she feels is in her best intrest or if they hurt her in any way. She uses some ASL too and is very quick at catching onto it. We watch a show and she usually learns a sign or two from an episode. She signs, more, eat/food, this, help, done/finished all on a regular basis. She knows most of her body parts, but everytime I say elbow, she point to either her eyeballs or eyebrows…it seems to be a tough one. He favorite word is no. She loves her Papas the bestest.She is up to 6 teeth. 4 on the top and 2 on the bottom.

May 2011

{ June 6, 2011 @ 1:53 pm } · { Monthly slide show, Trips }
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April 2011

{ June 6, 2011 @ 7:35 am } · { Firsts, Monthly slide show, Trips }
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Lily also got sick on the cruise..her very first cruise, but was nowhere near as bad as Preston, nor was it as long. She had a great time eatting and running all over. She was too little to go to play with the kids, but she enjoyed her time on the ship. She even had the matrade make her special food every night so she wouldn’t get sick! What a spoiled little baby!

CSID update

{ May 5, 2011 @ 12:37 pm } · { CSID, Sugar malabsorbtion }
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Well last month I took Lily to see an endocrinologist. Her endocrinology dietitian was helpful. She explained to me how to weigh Lily’s food and determine how much sugar is in something and how I can portion out her food so she can eat somethings without the Sucraid which is helpful since it is not always easy to get her to take it. We do finally have the prescription and the insurance is paying for it! Thank the Lord, because it is more expensive than I imagined in my wildest dreams.
As has been told to me, Lily’s acceptance of carbohydrates has seemingly been improving over the last couple of months. We have been able to give her things like 5 parmesan goldfish crackers or 1/4 of a graham cracker since she seems to be doing well with wheat. I gave her 2 Cheetos and she was fine, so the carbs seem to be moving in the right direction. I measure the food and keep the sugar to 2g/100g and it seems to be working.

March 2011

{ April 2, 2011 @ 6:45 am } · { All about me }
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Lily is doing well and actually growing. She just in the last week have out grown some clothes. Whoo-who! I was so excited that she took her med in the middle of the day (usually she refuses it unless she is really hungry like when she wakes up) I gave her some cheese-its as they only contain wheat and cheese, they seemed pretty safe. She loved them. She didn’t have any reaction to them and I was so very pleased. She can do wheat on the med, but potatoes and rice are still not her friends, granted they aren’t as bad as with out the med (no screaming, scrunching painful baby) but she still reacts with just a small amount of either. She also got her first taste of strawberries this month. As she starts to realize that drinking her medicated water equals tastier food I am hoping it will be easier to feed her. A few times this last week she took her med o her own. I didn;t have to force it down with a syringe. It was amazing!
She is talking more over the last week. She says “Hi” and “Bu-bye-buh” as she waves now. Over the last week she has to wave good bye to every kid in Isabelle’s class and to every car and person we pass on the way to the car. She loves saying bye-bye. She calls Preston “buh-buh” and on a few occasions she has even said “Isbelle” She says “Daddy” and “Papa” and “Gamma” She says “Done” and “Moe” which is more. I heard her yell “No” once at the kids. I’m sure we’ll be hearing more of that one soon. She points to Dad when you ask her “Where is Daddy?” but points to herself when you ask her “Where is Mom?” and smiles. I think she thinks its funny. She shakes her head “no” to every question you ask her and refuses to shake her head yes even though we all know she knows how to. She still asks, “Whadat?” all the time about anything she is not sure of. She loves her baby dolls and likes to be helpful. She can do simple tasks and loves to throw away trash.

February 2011

{ March 9, 2011 @ 7:09 pm } · { CSID, Lily's Antics, Monthly slide show }
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Little Lily. What can I say. That girl is crazy! She has a habit of making this crazy little face. I wish I could get it on camera for you. She calks her head to the side and throws it back a bit and then kinda smiles with her mouth open and shows her teeth and has her eyes and nose all squinty. Then she laughs because she knows it’s funny. She hasn’t really enjoyed sleeping this month. She did get a little runny nose this month too which has lasted for what seems like forever. She is able to answer most yes and no questions with a head shake now. She follows directions pretty well. She has decided that when someone makes her mad that the best corse of action is to hit that person…repeatedly…that’s not going over really well with any of us.
She had her 15 month check up and is a whopping 18lbs. Her pedi literally applauded me she was so pleased with her weight! She gained almost 2 pounds in 3 months, which in the past had only been about 1 pound in 3 months. She is 2’4.75″ which means she almost grew 2 inches too. It’s amazing what can happen when you know what the problem is!! The latest thing is that she is growing out of the 6month clothes that she has been wearing. She is in the 9month sizes and even 12months in pjs and tops! I know I seem way too excited, but I just am! She even has a potbelly. It’s so cute! A far as her CSID we are actively in the process of trying to get our insurance to approve her medicine for it it. It was denied the first time and is now in the process of waiting for an over-ride. I just received an “emergency” 30 day supply from the drug co as they have the prescription and are just waiting on approval. It was pretty amazing that when I stopped worrying about it and just gave it over to God I got a phone call the next day from the pharm telling me they were ready to ship her a freebie 30 day supply. I am so happy because we can continue to try to get her to take it on a regular basis. When she takes it she can have a pancake or a 1/4 of a waffle. It’s so great! And she can have fruit as a snack too! The things that make me happy…feeding my baby fruit!

January 2011

{ February 5, 2011 @ 5:30 pm } · { All about me }
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2011 has already been more productive than all of last year for Lily. She says words and even sentences like, “What dat?” “Who dat?” and ” I want dat.” she is the proud owner of 4 teeth. And she had been officially diagnosed with congenital sucrase iso-maltaste deficiency which from here on out will be refered to as CSID. She is dong much much better as we are no longer trying to make her sick by feeding her bad food. She even has the tiniest little pot belly. It’s so miniature. She is of course, still very small which I had to remind Matthew of just today when we were shopping and he wanted to get her a cute 3 piece outfit size 12 months. It was a jacket, pants and a onsie. I told him the short sleeve onies that she wears are 0-3 months. He put it back. She is starting on dairy right now and doing okay. it’ll take a couple of weeks to get her body used to processing dairy.

Two teeth!

{ January 18, 2011 @ 5:13 pm } · { All about me }
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Lily now has two teeth. Unfortunately that still doesn’t help her because her bottom one is on one side and the top os on the other side. Can you see them in the picture? They don’t meet and therefore they don’t help her eat anything at all. Just her luck, right?!!

Lily the tiny terror

{ January 18, 2011 @ 5:11 pm } · { Lily's Antics }
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Okay I have to say that Lily is a bully to her big brother. He lives in fear of her. She has decided that hitting is fun and hitting Preston is the funest. It used to be that I couldn’t leave Lily with Preston alone for one second because he would do something to knock her over or take something from her to make her cry. Now it’s the opposite I can’t leave Lily with Preston because she’ll walk up to him and hit him, take the dino he is playing with from him or maybe take his sippy cup. Of late, I hear Preston crying,”Mommy, Lily’s being mean to me.” Why does Lily think it is the funest to hit Preston? Because the rest of us tell her no and then walk away from her. He sits there and lets the beating happen!

December 2010

{ January 1, 2011 @ 10:19 am } · { Firsts, Monthly slide show, Sugar malabsorbtion }
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Well we spent the 4 weeks on the Sucraid and I tracked it as best I could (her intake and output) and her doctor says that “it appears to be helpful” and now I have to give her the same foods in the same portions without the Sucraid and that I can do that “as aggressively as I’d like”…I take that to mean that I don’t have to make her sick to the point that she is severely loosing weight. Sounds like fun…NOT! Oooooh haven’t used that one it awhile. Anyhow. We have discovered some foods she can eat…not sure if I listed them last time. Avocado, celery, lettuce, black beans, broccoli (she only like s the stems), red meat, pork and chicken that has been cooked in butter or nothing with salt and pepper and eggs. Looks better than before, right? I think that’s basically a salad, right?
Let’s see what has that baby been up to? She asks “whatsdat?” a lot, about everything. She points and tells us all sorts of stuff. She had a full conversation with me last night about her cup and her empty bowl of avocado and whether or not she wanted her bottle…she did. Of course I’m the only one who really understands her grunts and sounds for words, but she is pretty sure she is telling me what’s what. She has had a runny nose for most of the month…allergies? She yells at us when we don’t do what she wants. She is pretty over dramatic already. She throws the funniest tantrums. She sits down. Puts her arms out to the side then lays back then if she is really mad she’ll pick up her legs and at the same time and throw them up and down. Then she feels better and gets up.
Her very biggest news, and you might not even believe it is that on Dec 30 she busted out a tooth! Yes, I know she is 13 almost 14 months and she should have 6 teeth by now, but she is the youngest of the bunch to get a tooth. It totally shocked me. She was having a hard time getting to sleep and after about 2 hours she was chewing her hand and so I said, “Wanna bite Mommy’s hand?” Stuck my knuckle in her mouth and she bit me with a little sharp tooth. It totally surprised me! She is now the proud owner of one tooth that you can barely see…I can’t even get a picture of it yet! That’s been this month!

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