Tuesday, March 31, 2009

Lindy and Will's Brillant Idea

"Hey Will! I've heard Mommy and Daddy talking a lot about the March of Dimes. I think they are taking us to some walk called the March for Babies on April 18th at 9am at Bolton Park. I overheard Mommy telling someone that all the money they raise will help the March of Dimes do more research to prevent prematurity and infant mortality. You know we were born premature, right Will? You know our brother Adam died only 12 hours after he was born. We spent so long in the hospital fighting for our lives.

You know we have lots of money in our piggy banks, like $8. Maybe we could donate some of it to the March of Dimes so that other babies don't have to go through what we went through and so other babies don't lose their brothers."

"Lindy, I don't want to give away my money. I worked hard for that money. I get paid for being cute."

"Will, you can be so selfish sometimes. Remember when we had to live on those horrible ventilators and get our heels pricked a million times a day? Remember when we had IV's in our heads and legs and arms for all the medicine we needed. If we donate some of our money then we can make sure other babies don't have to go through that."

"Oh, you mean if I just give a little bit of my hard earned money then other babies can keep their identical twin brothers and other babies can stay inside their Mommies for 40 weeks? It really wasn't fun to live in that hospital for so long. Although I did have lots of nurse girlfriends! Let's go tell Mommy that we want to donate some of our money to the March for Babies."

"Hey Mommy?"
"Yes Lindy and Will."

"We've been talking and we think we want to donate some our our money from our piggy banks to the March of Dimes. We don't want other babies to go through what we went through. We don't want other kids to lose their brothers. We miss Adam so much. We want to help other babies. We want all babies to be born healthy."
"Lindy and Will, you are the BEST babies ever. That is so kind and sweet of you to donate your hard earned money to the March of Dimes. Let's go to your piggy bank."
"Mommy, get down our piggy banks."

"Give me that piggy bank. I want to donate money to the March of Dimes! I'm so excited!"
"Maybe I can just take a little extra money from Lindy's piggy bank and not touch mine," thinks Will.
"Mommy, help me mommy. Which one has my money?"

"I'm so strong I can pick up this heavy piggy bank. Being cute really pays off. I will throw this bank on the ground and smash it to pieces to get my money."
"Will, don't throw that. I will help you get the bottom off so we can just pour the money out."

"We decided to donate 75 cents. That's 9.375% of our piggy banks."

"Here is my money Mommy. I hope it helps other babies."

"Oooh, a quarter. It's so shiny."

"Here Mommy, here's my quarter. I hope it helps you get to your fundraising goal for the March of Dimes. It's money well spent in my opinion!"
"We sure do feel good donating that much money to the March of Dimes. If we can donate a little bit of our money, so can you! Any little bit can help. We don't want other babies to be born so early like us and our brother Adam. Please donate to the March of Dimes."

Saturday, March 28, 2009

Boring week

What a boring week we've had. Just one appointment and our deaf and hard of hearing teacher came came one afternoon. Boring weeks are good though.

Last Friday (after I'd already written my post) we went to Daddy's basketball game. He plays on our church league team. It was their last game of the season, but it was the first one we have been to. A lot of them were too late to go to. The babes seemed to have a good time. Will loved watching all the people and the game. Lindy was happy too, even if she couldn't see the game going on. We're looking forward to the warmer weather so we can really start taking them out and about.

Last Saturday we had fun with my friend Heather and her 10 year old son Ethan. Heather is a friend from college. We were so excited they came to visit us. They brought fun toys and played with Lindy and Will all day.

The only bad part of the day was when Lindy threw up. She woke up from her nap and seemed fine. She started eating yogurt and seemed fine but after a little while she started acting a little funny. I thought maybe she needed to poop or burp. I got her out of her chair to burp her and she threw up ALL over me. She is an equal opportunity puker. She got Drew the weekend before and apparently felt she needed to get me too. Maybe it was payback for my comment about it in last week's post. After she got me I put her in her chair and she proceeded to empty her stomach. It was so sad. I think it scared her a little bit. It was the most throw up I've seen in a long time. Right after she did it she seemed a little worn out but after having a bath she seemed fine. She played fine the rest of the evening. We gave her a bland dinner just in case but she ate it fine and went to bed fine. On Sunday she seemed fine until dinner time. After a little while she started gagging a little bit. She eventually threw up but this time her tray caught it all. After that she seemed fine again. She never had a fever and never acted like she felt bad. It was very strange.

Monday she seemed fine again until we put her down for the night. We put her to bed and she reverted to the days of crying so hard that she makes herself throw up. She would not calm down that night and I eventually ended up rocking her to sleep. She did the same thing again on Tuesday at nap time. She started crying really hard and eventually threw up. But she hasn't done it since Tuesday. We don't know if all the throw up is all related though. Over the weekend it was during meal times and during the week it was from crying so hard. Who knows. She has cried hard a few more times at naps and bed time but has thankfully not thrown up.

Her only appointment this week was physical therapy on Tuesday. Our therapist was very pleased with how well she is standing. She can tell she is getting much stronger. We did decide to go ahead with custom braces though. The ones we have were temporary ones to see how she did with them. Her feet are big enough that we can get the real ones for her. One is going to be an AFO which will come up higher to give one of her legs more support. The other will be an SMO which is a lot lower. As the first leg gets stronger she'll eventually just have SMO's for both feet. We're just trying to get her up and moving.

That afternoon we had the deaf and hard of hearing teacher and really for the first time ever, Lindy was very inattentive. She wouldn't really respond during our six sounds check and she just wouldn't pay much attention to what we were doing. She thought she was too good for her hearing therapy on Tuesday.

Will finally had another tooth break through this week. His bottom right molar has finally broken the surface. That is his 11th tooth now. Will has figured out how to peak out from behind furniture and toys. It's so funny. He hides behind a chair and then peaks out at us. Or he stands outside his bedroom door and leans in to look at us and then leans back. He thinks it's pretty funny too! He is all about books this week. His love of books seemed to kick into high gear this week. We have seen him coming at us with a book countless times this week. We are starting to see a little bit of a temper in him. He is starting to show some frustration when he doesn't get what he wants or we don't read the book right then or if he knocks over something he's building. The beginning of good times I believe!

We went down to Charlotte yesterday to hang out with GrandBob. We had a nice day and he fed us well. Last night we went to their church's consignment sale. It's the first time I've ever been to a consignment sale but I got some good stuff for great prices. They had a ton of cute dresses for Lindy. The sale is really this morning but we got in last night because Suzette helps work at it. Oh I almost forgot, Aunt Anna was at Grandbob's house :) We had fun seeing her!

It's been a rainy weekend so far. We're just hanging out inside. Enjoy the pictures.

Funny Lindy hair!

This is at Daddy's basketball game. They were decked out in their Wake gear for the game that night. Too bad Wake blew it in the first round.
Heather, Will and Lindy
Ethan, Lindy and Will.

He sat down there and apparently wanted me to play some music (the stereo is back there).

Check out the book Will chose. "My First Makeup"

Lindy loves giving kisses! She has started putting some tongue into it though. We're going to have to watch her!

Thursday, March 19, 2009

March Madness

Basketball is in the air! We love this time of year.

We started off last weekend with Lindy getting a cold. On Saturday her nose was running a little bit. Her nose hardly ever runs. Drew put her down for a nap and he kept hearing her coughing loudly. When he was checking on her she woke herself up and was pretty upset. She then proceeded to throw up all over Drew! I'm sorry I was out with friends and missed that ;) That night was a pretty rough night. She went to sleep okay but 20 minutes later she was hacking away. Just the week before I had asked the doctor if it was possible that her nose doesn't run. She said that everything probably drains down her throat. We think that everytime we'd lay her down the stuff would run down her throat and pool back there. I ended up in the recliner with her that night. Sunday we started giving her sauna baths. We'd take her in a hot steamy bathroom and try to open her up. We've done this a bunch this week trying to open her up. I've suctioned and suctioned and hardly ever get anything. Between the steam baths and raising her bed to a near vertical incline, she finally started sleeping better. She was so sweet to pass her cold off to Will. Will's nose on the other hand runs like a faucet when he has a cold. He woke up one night crying pretty hard and actually let Drew rock him back to sleep. Lindy still sounds stopped up and Will's nose is still running some but they are fine now.

The beginning of the week was busy but the end was pretty boring. Monday was a busy day with three appointments. Lindy and Will both had swallow studies. It has been about 4 months since their last one. Last time they both surprised us. Will had made no progress and Lindy regressed and had to go back to honey consistency. We were anxious to see what, if anything had changed. Nothing changed for Will. I think he'll be drinking nectar consistency liquids until he is 18. By watching his tongue and where he starts his swallows they can tell his tongue isn't cupping quite like it should. Our OT is going to send me some exercises for his tongue to see if we can get it stronger. Lindy on the other hand did really well and made good progress. She did well with the honey consistency so we tried her on the nectar consistency. She did excellent with the nectar consistency so then we tried plan whole milk. She immediately aspirated it though! Oh well, she did move up from honey to nectar. We'll take it. We also had both kids eat little bites of a pb&j sandwich, yogurt, applesauce, and some fruit and they did well with those. I took fruit because I was wanting to see what they did with it. Not surprisingly, Lindy pretty much just swallowed it. It did go to the right place though. Will chewed up the fruit better but he actually penetrated (let a little go in his airway, not a complete aspiration) some of the juice from the fruit. So we just have to make sure the fruit is drained well.

After their swallow studies, Lindy had an ophthalmologist appointment. For the first time ever she responded to the Teller Acuity cards. She noticed down to 4.8 cm/cycle. I asked what that meant and he never had an answer for me. I just know that she is usually more interested in the big gray board than what is on it. They also dilated her eyes and he says her vision is a -26.00 in her right eye and a -17.00 in her left eye. He had a resident or some type of medical student in the room with him and when he said those numbers the guy was like, "Wow." I thought that was so rude. He needs to keep his comments to himself. We know her vision is bad, we don't need comments like that from the peanut gallery. I don't know how anyone with that kind of vision sees at all. I have a -4.25 and a -.3.5 and I feel like I can't see. I just don't know how she sees. But she does. She sees so well that we often forget she has vision problems. I just can't wait until the day when she can tell me what she sees. It's a little worrisome that he keeps saying her vision gets worse everytime we go. I told him that people are forever asking me what her vision is. He said there just isn't a clear answer right now. He said to tell people that in her right eye her vision is probably worse than legally blind and in her left eye it is probably better than legally blind. So still no 20/20 type number. We are to continue to patch her eye 2 hours every day. I was seriously hoping to discontinue that because it is a horrible two hours every day. For the entire two hours she works to get the patch off. It usually requires someone holding or sitting very near her for the entire two hours. If you so much as turn your back on her she'll have it off in no time. No relief from the patching though. He made the statement that he is making an investment for her future vision. Trying to make that eye as strong as possible.

Our only other appointment for the week was with our deaf and hard of hearing teacher on Tuesday afternoon. Most week days we do her Learn to Listen sounds. Lindy (as well as myself) is getting SO tired of them. As soon as you bring one out, she raises her hand to tell it goodbye. Sometimes we use a box with a lid on it and she has recently stopped reaching in and getting them out of the box. If she does take the animal or object she throws it behind her! It's obvious she is getting very bored with them. But as part of her hearing therapy we need to do them. It is getting harder and harder to do them because I know she isn't much interested in them. She is still saying "aaaa" after quite a few words now. Our hearing teacher said if that is the only sound she can make then she is using it for every word she is trying to imitate.

I lied last week when I said the kids had gotten their last Synagis shot! The nurse called and said they both have enough medicine left in their vials for another shot. She said if we don't want the shot then they would throw it away. Since it's there and been paid for I figured we should give them that one last month of protection. April is when it's generally considered safe to take them out and do a lot more, but you can still catch colds and RSV. If I can protect them one more month then we'll do it. Sorry Lindy and Will, I really thought we were done!

We have continued to work on self feeding this week. Will is doing awesome! He is so close to basically feeding himself every meal. Most of the time now we just set it in front of him. He still needs a little help depending on what the meal is but he's doing well. He even stays relatively clean! He seems so much happier at meals now. He used to be so loud and screaming at us and now we hardly hear a peep out of him. Meals are so much more pleasant. Lindy is another story. If you hand her a filled spoon she does great. But I can't get her to put the spoon back down in the bowl of whatever food. I think for the first time I can really tell where her vision is a problem. I try pointing to the food down there but she just doesn't see it or get it. We'll keep working on it. It's definitely something we'll be talking to our vision teacher about.

We have 30 days left until the March for Babies walk. We have gotten a lot of donations over the week but we still want more! We've had some new people donate to us but would love for everyone that supported us last year to do so again. Please let me know if you are considering walking with us. Only a couple people have seriously mentioned it. We want you - and your donations!!

Enjoy some pictures of our week. We had lots of silliness going on this week!

Will has started climbing in and out of things and furniture.
He couldn't figure out how to get down. He was up there at least 5 minutes before I finally helped him out!
We played with bubbles for the first time! Lindy seemed to enjoy it more than Will.

Silly babies. Lindy was on the ground so Will laid down to be like her!
Who knows what was so funny! Will's new favorite activity, watching TV. He was watching the basketball games yesteday. He's been pretty worried about his brackets lately!
Silly Lindy.
We took a wagon ride outside yesterday.

I gave each of them a daffodil from our yard. They checked it out for about 3 seconds and then both started tearing them apart. They were pulling off petals as quick as they could. I had to take them away quick as they then tried to eat them.

"Shoulda had a V8"

Riding in the wagon is exhausting.

A rare after dinner treat. Suckers!

Tuesday, March 17, 2009

Happy St. Patrick's Day and First Pigtails!

We are wearing our green today. This is one of the few, if not the first, holidays that I haven't had actual holiday shirts for them. We can still celebrate by wearing green.

I tried another new hairdo with Lindy. I think this one is pretty darn cute! She has left them in all day too! (Something she won't do with bows or clips).