Warm Weather Week

It feels like spring has arrived – but I’m not getting too hopeful.  I know it can go back to being cold at anytime.  We did enjoy our near 70F days by playing outside.  It did us all good to get some fresh air.

Lindy had PT on Tuesday morning.  She had a couple meltdown moments but overall she did pretty well and worked hard.  It feels so long between sessions now that we only go every other week.  Drew was headed out of town that morning and I was going to have to take Will with me – something I don’t enjoy doing.  I talked to Uncle Ed and soon-to-be Aunt Jamie and they agreed to watch him while I took Lindy.  They live very close to the hospital so I just dropped him off on the way.  I think he was a little confused.  I’ve never dropped just one of them off somewhere.  He was standing at the front door just watching me drive off which was a little sad.  But I knew he would be fine.  I hear he got to play on the piano and the steps which would constitute a great morning for Will! 

Wednesday morning Will had speech therapy.  He did not talk as much this week but overall we notice a lot more talking from him.  Our early intervention service coordinator was here so he might have been acting a little shy in front of her.  He was also very interested in playing with her toys and not talking.  We did talk about Lindy getting a speech evaluation and Lawson starting services with her too.  I figure we should take advantage of the fact that we have a speech therapist coming to our house every other week.  She used to work with cochlear implant and hearing aid children at her last job so I think it will be a good fit. 

Wednesday afternoon we had hearing therapy but we didn’t actually do any therapy.  North Carolina has a couple great programs for kids with disabilities.  Our vision and hearing therapies are all free to us.  Chris works with the North Carolina Early Intervention for the Deaf and Hard of Hearing but there is another program called Beginnings.  Beginnings is a parent advocate group here in NC.  Terri from Beginnings came out when we first got Lindy home and explained all about hearing loss and what forms of communication we could choose for Lindy.  She fades out after that until you start talking about transitioning kids into preschool and the school system.  We talked to her for almost two hours on Wednesday.  We learned a lot of stuff about her preschool choices and all the IEP meetings.  We looked at an IEP so we could be a little bit comfortable with it.  Terri knows the laws inside and out and will be coming to all of our IEP meetings with us.  She will be there in case we need her to help fight for Lindy and what she needs and deserves.  Of course we hope we have no problems but it is great to know she is there and available to us.  It’s hard to believe we are even talking about all this IEP stuff – how can they be old enough to go to preschool?

Today we had vision therapy with Lesley.  She works for Governor Morehead which is another free state program for kids with vision loss.  We worked on colors which is great.  Lindy kind of struggles with matching up same color objects.  She has started saying the color names but she needs to learn which ones are which!

Speaking of talking, we feel like the kids are talking a lot more.  Will knows all his colors and can say ‘blue’, ‘geen’, and ‘ellow’.  I haven’t really heard him say ‘red’ yet.  Lindy will also say the words if you ask her to.  It is so cute to hear them talk.  We’ve been working hard on getting both kids to say ‘o'.'  Neither one of them really purses their lips when they say it.  We’ve talked all week about ‘open’, ‘moo’, ‘boo’, etc….  Wednesday night Will was playing with a Winnie the Pooh phone and I told him to put it away.  He turned it off and Winnie says' ‘Goodbye’.  Will repeated him and said ‘Goodbye’.  It was cute.  We see both of them talking more, but Lindy has to be prompted more to say things.

Don’t forget to support us in our March of Dimes walk.  We have 14.9% of our goal!  Thanks to the Grecos, Birbicks, and Joanna for recent donations.  We had a fundraiser dinner at church last weekend and raised money for our team.  We had the 1st Annual Palmyra UMC Chili Championship with 9 people entering chili into the contest.  Congrats to Nancy who was picked by three judges as having the best chili!  We appreciate the people who did come support us.  I think everyone there had a great time tasting all the different chili!

Lindy pretty willingly poses for me these days.  Poor Buddy just hasn’t embraced the camera yet. But Daddy can always make them smile! Our chili entries last weekend. The highly esteemed judges. Not eating chili at the chili contest!  Cody, the other boy in the picture was a preemie as well.  He weighed 1lb 13oz at birth.  He’s now 10 or 11 years old! Nancy, the winner, receiving her gift certificate to a local restaurant.Playing outside in the warm weather!  Yeah, Daddy is home from the grocery store! Swinging – sorry it’s blurry.    Sliding – Blurry too.  Can’t catch them in motion without it being blurry!  Waving at the cars driving by.  I love when Lindy sleeps like this.  Reminds me of a frog! Will was so excited to have the letter ‘A’ on his shirt.  He talked about ‘A’ all day long.  He kept finding the ‘A’ magnet and holding it up to his shirt.  He was still talking about ‘A’ this morning!  He loves the alphabet these days. Chillaxin on the couch watching a little of the ACC basketball tournament. Lindy doesn’t watch tv, she just follows us around. I can’t get enough of my babies giving kisses to each other. This one is blurry and off centered as well, I wasn’t fast enough to get it focused.  But it’s so cute I’m posting it anyway.  I told Will to give Lindy a hug and he laid his head on her shoulder.   Then she put her hand on his back.  TOO CUTE!

Have a great weekend! 

Cruddy Week with a Bright Spot

The kids have been sick most of the week with colds, which has led to a pretty cruddy week.  Will seemed to feel pretty bad on Tuesday.  He was feverish off and on.  We had a babysitter in the morning because Drew and I both needed to be out and she was reading books to the kids and they both fell asleep on her!  Will definitely didn’t feel good and Lindy was probably starting to come down with it.  Wednesday night was a a really rough night for Lou Lou (and us).  She was up and down all night long.  I had her in the recliner for a long time and she could never get comfortable for more than a few minutes.  Thursday Lindy really didn’t feel good.  She had a fever on and off all day long.   Drew gave her a steam bath to open her up and we think it worked.  She took a decent nap and then her nose started running, something it usually doesn’t do.  It normally drains down her throat.  Although it’s gross, we’d much rather it come out of her.  She did fall asleep on me a couple times that afternoon so I know she didn’t feel well.  Lindy doesn’t usually sit still long enough to fall asleep on someone.  She slept through the night Thursday night and you could tell she felt a lot better Friday.  Except for coughs they now have, they are getting back to normal.  We’re ready for this cold to move on – except I have it and Drew thinks he is getting it.  

I had a busy day on Tuesday playing ambassador mom for the March of Dimes.  I had to give two speeches that day.  One to all the principals in Forsyth County and then to my OBGYN office.  It sure did snow again on Tuesday.  We got about 2 inches but it was gone by the next day. 

Lindy did have hearing therapy on Tuesday morning before Drew left.  I think there were a few interruptions here and there so I hope they got to do some work!  Chris did say Lindy was able to pick two objects out of a group a couple times.  Something we’ve been working on and Lindy was struggling with.

The only other appointment – and the bright spot of the week (heck, of the year so far) – was the kids had swallow studies on Thursday morning.  We really considered cancelling because the kids were sick but we decided to go.  Lindy was up first and wow, Miss Thang  wanted NOTHING to do with the swallow study.  I first tried having her eat a bite of a sandwich.  Nope.  She pushed it away.  Then I tried oranges.  Nope.  She was having none of it.  Okay, fine, we moved on to liquids.  The kids are presently at a thin nectar consistency.  Have a drink of milk, Lindy.  NOPE.  The girl wouldn’t take one sip.  I ended up pretty much force feeding the child with a syringe.  She fought me the entire time.  One person was holding her arms down and I had to somehow get the milk in and hold her head straight.  It was challenging.  She did great on the thin nectar consistency though.  No penetrations and no aspirations.  So we moved on to just plain old water with no thickener in it.  Again, I had to force feed the child but the outcome was amazing.  She did GREAT on thin liquids!  NO penetrations and NO aspirations.  We were shocked!  I hadn’t even really dreamed Lindy would come off thickener this time. 

So then Willy Will was up.  Sweet boy that he is, he did eat a bite of sandwich.  Looked great.  Then the sweet boy ate a few bites of oranges.  Again, looked great!  Okay Will, have a drink of your thin nectar milk.  He took one sip and then he was done.  He was on to us.  He knew it was different.  The barium they use has a different taste and texture to it.  So again, I ended up force feeding the child with a syringe.  He did great with the thin nectar so we moved on to plain old water with no thickener.  He still wouldn’t take a sip so I gave it to him with a syringe again and guess what?  He looked great too!!!!  He did have two small penetrations (where a small amount of water goes into your airway.  It has to go down past your vocal cords for it to be considered aspirating).  He penetrated twice but then he pulled it back out of his airway and down the right path which is good.  He had two penetrations out of two syringe fulls of water so that is considered okay. 

We were shocked.  I honestly felt like they would be on thickener until they were 21.  I swore their first beers would have to be thickened!  We are not going to just stop using thickener cold turkey though.  In fact we aren’t going to do anything until they are over these colds.  Once they are over the colds and feeling all better then we will cut the amount of thickener I have been using in half.  We’ll let them get used to this consistency for a few weeks and then try thin liquids.  We have tried switching quickly between two consistencies before and it didn’t go well.  They really have to be weaned down.  My children have never drunk just plain liquid.  Well they did for a little while in the NICU, before it was realized they were aspirating it.  I have NO clue what it is like to pour milk straight into a cup for them.  Or turn on the faucet and get them some water.  We can’t leave water cups sitting out for them because the thickener has to stay cool or it goes bad.  What an amazing treat this will all be!  In good time we will get there! 

We will definitely be watching them closely.  We all really wish they would have drank from their straw sippy cups.  I almost feel like it wasn’t  a true test because we used the syringe instead of their cup.  I think I’m just really nervous.  The last thing I want them to get is aspiration pneumonia, which is what happens if they aspirate.  We’re really excited though!

We’ve seen GrandBob a couple times this week.  He came by to visit on Wednesday because he was in town.  Then we saw him on Friday but for a different reason. Drew’s grandmother had a hemorrhagic stroke on Thursday night so he was up at the hospital.  GrandBob and Suzette came by Friday afternoon because you can’t be in the ICU from 2-4pm.  Ever since they left Will has been saying, “Bye-bye GrandBob, Bye-Bye Suzette.”  Today we got to see Mimo and Aunt Anna as well.  They came to town to see Nanny and then came to visit us.  Well I think they really came to see the kids, not us.  We’ve heard ‘Bye-Bye Mo” this evening.  No love for Aunt Anna though.  Sorry! 

Thanks to the Beasleys and Pressons for being our first March of Dimes donators!  We’ve reach 1% of our goal.  Yahoo!!  See the post right before this one for more info on our March for Babies walk in April.

Before getting sick. One morning while Janice was babysitting, she showed Will his shadow.  Now he loves to play with it on sunny mornings. “What’s that?” “I don’t feel well” Lindy was still feeling okay at this point. “Now I don’t feel well” But she still managed to eek out a smile for me. One evening I walked in the bathroom and found this.  I thought it was so funny! I got a picture of Will pre-swallow study.  Lindy started freaking just getting into the chair so there was no time for pictures of her.  This is the contraption they sit in.  They have to sit looking straight forward so the x-ray on the right side can watch the fluid going down.  It should be easy – they eat, drink, and sit still.  Doesn’t work that way when 2 year olds are involved. The kids were playing with the curtain today and both ended up inside it.  I thought this looked weird.  It’s kind of how I imagined them being in the womb.  Fun with Mimo and Aunt Anna.  Mimo always does ‘Ride a Little Horsey’ with the kids.  Today she was doing it with Will and ‘they all fell down’.  Right at the time they all down, Lindy decided she would get in on the action and sat down – on Will. So then two little horseys had to ride together. Hug Mimo.  Lindy was playing big sister and putting her arm around Will.  She’d turn and look at me and smile big.  It was too funny. The kids have been tickling us this week.  Will says ‘tickle tickle’ and it’s pretty cute.  Tickle tickle Aunt Anna! Sweet kisses

March for Babies – April 17,2010

It’s that time of year again! We are starting our fundraising for our 2010 March for Babies Team. The March for Babies is the March of Dimes’ largest fundraiser each year.

If you are reading my blog then you most likely know why we support this organization. Our triplets were born at 25 weeks and 2 days. 15 weeks early. All were under two pounds and around a foot long. Our sweet baby C, Adam, passed away 12 hours after his birth. Lindy and Will had to fight hard to survive.

Will spent 100 days in two different NICUs and came home right before his due date in November. He had two surgeries while he was in the NICU.

Lindy spent 143 days in three different NICUs and came home right before Christmas. Lindy had 8 surgeries while in the NICU. She had her PDA ligated, had a reservoir and later and shunt placed for hydrocephalus (a result of her Grade III and IV brain hemorrhages), and 5 eye surgeries for retinopathy of prematurity (3 laser and 2 vitrectomies).

Losing our son and sitting and watching our babies fight for their lives was the hardest thing we’ve ever been through. By supporting the March of Dimes, we are supporting research that will prevent premature birth and infant mortality. By supporting the March of Dimes, YOU will be helping to prevent premature birth and infant mortality.

If you want to help make sure all babies are born healthy, please donate using my personal fundraising page. You can simply click on this link or click on the March of Dimes badge on the top right of the page. Both of these links will allow you to donate online.

If you are interested in joining our Million Dollar Babies team, walk with us, and raise money from your friends and family, click this link You should see a button that says, “Join This Team.” We’d love to have a huge team that raises a ton of money! The walk will take place on April 17, 2010 at Bolton Park in Winston-Salem. Registration starts at 9am.

We were chosen as the Ambassador Family for the Winston-Salem walk this year. We have to prove that we were a good choice for this role! I raised more money than anyone else in the 2009 Winston-Salem walk and our family team also raised more money than any other family team in the 2009 walk. Help us do that again by supporting our Million Dollar Babies team!!!

Lindy Will Adam

Fun With Friends and a Frightening Friday Morning

We have been able to spend the past two Saturdays playing with our friends Kris, Katie, Micah, and Claire.  We have had such a good time.  Yesterday we were joined by our friends Todd, Amy, Atha and Nora, and Ryan Cole.  Once upon a time Todd, Kris, and Drew were all roommates in Durham.   We love being able to get everyone together. 

We have had a pretty normal week with appointments.  Lindy had PT on Tuesday and she did well.  She has officially been decreased to every other week!!  That’s a great step for her since it means she doesn’t need weekly PT.  Wednesday morning Will had speech therapy and he did well too.  He loves seeing what is in Miss Lawson’s big bag of toys.  He is really trying to say many more words which is neat!  Wednesday afternoon Lindy had hearing therapy with Chris.  We talked a lot about Lindy’s speech.  We decided we really need to push her to talk and we talked about getting her into speech as well.

Friday morning brought our scary event for the week.  I was in the nursery with the kids and I had just finished getting Lindy dressed for the day.  I picked Will up and put him on the table and he starts crying and pulling at his pj’s.  I got them off him and started to change his dirty diaper.  He was still crying and just kept messing with the right side of his belly.  As soon as I got his diaper change done I picked him up and he just kept doing it.  I took him and showed Drew and he said to call the doctor.   We’ve never seen him act like this before.  It was obvious he was in pain.  Because he has had two intestinal surgeries as a baby, we were worried that it might be something going on with his intestines.   Drew talked to the nurses and they said to bring him in to the office.  He was acting like he was in pain for about 30-45 mins.  We called our go-to babysitter, Janice, and she was at the house in 15 minutes to stay with Lindy.  By the time we left for the doctor though, he was starting to act pretty normal.  We got to the doctor’s office and they got us in a room pretty quickly but it was taking forever for a doctor to come in.  (On a side note, Will weighed 24lbs and 4.8oz).  We appreciated them working us in but it got to the point that Drew had to go ask.  Finally a doctor comes in, but Will had actually fallen asleep.  Which is a bit odd since he never naps in the morning.  The doctor reassured us that we definitely had a right to be concerned.  He said that anyone with intestinal surgeries is at a high risk for more intestinal issues.  He examined him and couldn’t find anything wrong.  He listened to his belly and pushed around on his belly and said everything seemed normal.  He felt comfortable sending him home with instructions to watch him closely and watch his bowel movements.   If his bowel movements started coming out funny looking or if Will started acting like he was in pain again we were to take him on to the ER to get x-rays and ultrasounds.  He was going to email Will’s surgeon and just give him a heads up. 

We got home and he ate a normal lunch and was acting pretty normal.  He did take a 3 hour nap though, which is a little unusual.  After his nap he acted normal the rest of the day. We definitely don’t know what it was but it seemed to have wiped him out on Friday.  He never sleeps in the morning or hardly ever takes a 3 hour nap.

We’ve definitely watched him closely.  All yesterday he played, ate, slept, and pooped normally.  Today he has eaten normally but when we put him down for his nap he started acting a little funny like something might be hurting him.  And then in no time he was back to normal.  Because he’s pooping normally I’m thinking it’s not something with his intestines but we just don’t know what is going on.  If he wakes up like he’s in pain then we’ll have to decide if he needs to go to the hospital.  Let’s hope not!  I sure wish they could talk and tell us what hurts.

The kids have continued to talk and say new things this week.  Last weekend Will said, ‘Go Deacs.’  He obviously isn’t saying it enough since they are on a major losing streak right now.   Sunday after he ate some pizza for lunch he started whining a bit.  I asked him what was wrong and asked him what he wanted.  He said, ‘Apple.’  He was telling me he wanted applesauce, which he usually does have for lunch.  It was cool for him to tell us what he wanted!

Both kids have recently figured out how to put two words together.  Both have been saying ‘Hi Boo’ for a long time, but that’s it.  They will both say ‘Hi Mama’ and ‘Hi Dada’ now.  It’s too cute to hear them.  Lindy has also been saying ‘Open’ and ‘Go’ this week too.  We get excited about every word around here since they are pretty far behind.

While we were at the doctor on Friday I asked him about the dry skin on Will’s legs.  I wanted to make sure it was just dry legs.  He said yes, but it’s actually a bit of eczema.  He said to keep him moisturized and use something like aquafore on it.  Will does have really dry skin.  Worse this winter than I’ve ever seen it.  His face is constantly dry and I noticed this morning his head is completely dry.  I moved the humidifier into their room so hopefully that and keeping him lubed up will help him out some.  He apparently got his dry skin from his daddy whose knuckles are so dry they are bleeding. 

Well, that’s the news of the week.   Hard to believe that tomorrow is March 1st!

Both the kids love their Tag Readers. Last weekend Will and Micah rode horses together.Lindy and Claire sat and chatted.  He’s turning into a little man!Lindy’s favorite spot, in the chair.  She won’t get down so she ends up spending a lot of time there these days!  When we get her down she immediately climbs back up!Last weekend the temperature was almost 60F so we went outside.  Parts of our yard still have snow that won’t melt!  How crazy to play in the snow when it was so nice out! The kids were watching it snow most of the day on Wednesday, but thankfully it didn’t stick.  Thanks for picking up the puzzles Lindy but I think you missed a few pieces!   She has started giving a cheesy grin when she sees the camera! Will and his magna tiles. Playing with friends yesterday. Best shot of the little ones we could get.  Micah didn’t feel like joining the group picture so it turned out to be Will and his harem.

Lindy, Atha, Will, Claire, and Nora. The girls kicked the boy off the couch so they could hang out!  Atha and Nora are identical twins.  Lindy is over a year older than all of them and is the same size, maybe smaller.  I think she has them all in weight, but not height!

Have a great week.  Guess what?  It’s supposed to snow again this week!  Alright winter – GO AWAY!!!!