SHE DID IT!

Erin reached a major milestone today: SHE GRADUATED FROM FEEDING THERAPY!!!!!!

(Can you tell that I am excited??)  We took the month of August off and met with our wonderful feeding therapist, Linda, this afternoon.  I was telling her how Erin eats hot dogs, grilled cheese, sunflower butter and jelly sandwiches, chicken nuggets, avocado, bananas, cheese, crackers, yogurt, applesauce, mandarin oranges and almost anything we put on her tray.  She wants to feed herself with a fork or spoon.  Erin is drinking from a sippy cup without having the liquid thickened.  We are only giving her 4 oz of Pedi-Sure tube feedings right before bed.  So with all of this being said, Linda said that Erin has graduated from Feeding Therapy.  I have to admit that I started to cry.  I contained myself and didn't sob like a baby, but on the inside I was crying those tears.  I never thought that we would get to this day. 
We started feeding therapy exactly one year ago this week.  We had our initial evaluation and then had to wait three months to get to work with Linda, who we were told was the best (and I would have to agree that she is!  Not only did she help Erin learn how to eat, but she also taught me what to do to help Erin be successful.  Without Linda, we would not be here celebrating today!).  I spent three months last winter rushing from work to pick up the kids and get them downtown by 4:00 two days a week for Erin's appointments.  If grandparents were around, they would come along so that they could learn how to feed Erin too. Mark was there with us too.  I am sure we looked like a freak show- double stroller, mom, dad, grandma/grandpa.  Without all of this support I don't think that I would be typing this blog today.  Erin made some progress, but we decided to wait until summer to go back to therapy. 
We started back at feeding therapy on my first day of summer vacation and now today, my last day of summer vacation, I am typing this blog.  I never thought that we would make so much progress this summer.  Erin wasn't eating solids three months ago.  She wasn't drinking from a sippy cup.  She wasn't using utensils to feed herself.  She was strictly tube fed.  She has done an amazing job this summer and I am so proud of what we have accomplished.  I never take for granite the moments when I see both of my kids drinking from sippy cups, just like 'normal' kids.  I love that I can put food on their trays and they eat it.  I know I've said it in another blog, but we are finally NORMAL and it feels great!


On a side note, we will probably take her tube out in the spring.  They want to keep it in for the winter just in case she gets sick.  I am sure that I really will cry like a baby the day they take out her tube!

Pictures from June

 

 

 

I was just looking through the pictures on our computer and found these from June. I can't believe how much older the kids look in just a few months! Time is going by so quickly!

This is a picture of the banner that was in the lobby of the Children's Hospital. We were included in the Annual Report for Spectrum Health this year. Our story was featured for the Children's Hospital. 

 

 

 18 month pictures taken at Olin Mills.  Erin was planning outside the morning before the pictures and she fell of the driveway.  She got a big red scrap right on her forehead.  Oh well, nothing we could do about it.  This was a true reflection of what was happening that day.

They love to watch The Mickey Mouse Clubhose.  Well, they only watch the opening and closing songs, but it is very cute to watch the kids get excited and run to the TV to dance to the songs.

Erin LOVES to wear things on her head: hats, shorts, pants, just about anything she can find will go on her head.

These two love to play outside.  They will grab their shoes and run to the door and wait for someone to take them out to play.  It can be a bit challenging because they like to run to towards the road or in opposite directions.  Erin and Will can both say 'shoes.'  Erin is learning how to say 'out' for outside.

I like that this picture is blurry becasue Will and Erin are always on the move!! Will has a tent in his room and the kids love to play in it.  I have to admit that mommy, daddy and Clark (the dog) climb in there too. 

My mom brought hte kids up to school for Field Day.  Throughout the year, I told my second graders that they would meet Will and Erin at Field Day. I was glad that my mom was able to bring them up for my students (and some parents) to meet.  Erin loved watching all of the big kids.  Will wasn't so sure about all of the kids surrounding him.  I was proud to be able to show off my babies.  :-)

Will loves to push anything! The Cozy Coupe, strollers- for the doll or his, shopping carts, trucks, baby walkers- it doesn't matter. 

Bikers for Babies

It's that time of year again for Bikers for Babies.  Mark is raising money for March of Dimes and would love for you to help him reach his goal.  Thank you!!

http://www.bikersforbabies.org/michigan/hughes2012

Here is a brief explanation of why we raise money for the March of Dimes.

I’ve been pondering the question of why I raised so much money for the 2011 March of Dimes Bikers for Babies.  The answer is simple:  I love babies, bike riding and fundraising.  This event combines all three of these things.  Before my twins were born at 25 weeks and 2 days, I didn’t know much about the March of Dimes.  But, that didn’t matter because the March of Dimes was there for my family during the scariest time of our lives.  The research that has been completed by the March of Dimes provided life saving medication for my babies.  Without this medication, our story could be so different.  The March of Dimes also conducted the research to find out that adjusting the oxygen settings on a ventilator can improve a preemie’s eye site.  Because of this discovery, my children did not need to have laser surgery to fix the ROP in their eyes.  Not only did the March of Dimes help my children, but they also provided support to my wife and me.  Upon arriving in the NICU, we received a bag filled with information, keepsakes, journals and a disposable camera to help us during the journey.  We attended parent support meetings and had a chance to meet others who had similar experiences.  The March of Dimes was there for us when we needed it most. 

I wanted to find a way to give back to an organization that helped us.  I had heard about Bikers for Babies and instantly knew that this was the way I could give back.  I didn’t have a motorcycle, but I did have a pedal bike that I decided to ride in the event.  I formed a team and started raising money.  With the help of social media, I was able to encourage people to donate to Team Will and Erin.  For example, I reminded my friends that instead of buying a cup of coffee from their favorite coffee shop, they could help save the life of a baby.  Just pointing out something so simple helped my friends learn that a little bit can go a long way.  I enjoyed the challenge of raising the money and educating people about the March of Dimes.  I was humbled by the outpouring of support shown by family, friends and complete strangers.  I am proud to have helped raise so much money for an amazing organization like the March of Dimes.

A Few More Things

This is one of my all-time favorite pictures of the kids. They look so grown up and perfect! We signed up for the Summer Reading Program at our local library.  They gave us a bingo type sheet with a variety of activities to do.  We completed our sheets and headed back to the library to turn them in.  Will and Erin each got to pick out a board book and they got a packet of goodies including a personal pan pizza from Pizza Hut, 2 tickets to a Griffin Hockey game and 1 ticket to a Whitecaps game.  Not to bad for just having some fun! I decided that I want to take a picture of the kids in front of the library sign each summer.  I think it will be neat to have them for their high school graduation boards/slideshows.  Nothing like planning ahead.

I have had an awesome Mother's Helper this summer. She is a former student who is 10 years old and lives one street over.  Morgan comes over to play with the kids almost every day.  She is very helpful and knows our routine.  The kids get so excited when she is at the door.  She helps me take the kids outside (because they always run in opposite directions when we go in the front yard).  We have gone for bike rides to the park and the library.  By the time we left the library on Monday, poor Morgan looked exhausted.


Erin loves to steal toys from Will. She will go up to him and take whatever he is playing with. He usually sits there and 'yells' at her. Rarely does he fight back (even though we encourage him to). We have started a timeout spot for the kids and surprisingly enough Erin sits there for about one minute. We also have her give the toy back to Will and then try to distract her. Will gets really frusted with Erin when she takes the toys.

When Erin is still sleeping Will gets so excited to go to her room and get her up.  He starts giggling and running towards her door. Then he will knock on it and when I let him in he runs to her crib. Erin always gets a big smile on her face. 

Will LOVES to be chased.  We say 'I'm going to get you,' and he takes off running in his cute toddler way.  He stops to look over his shoulder to see if you are still chasing him. He giggles, smiles and loves this game. 

Erin can tell you what a dog say 'wof' what a monkey says 'ooo-ooo' and what an owl says 'hoo-hoo.' (I bought a new shower curtain for their bathroom and it has owls on it. So during their bath tonight, daddy taught them what an owl says).
Will knows that a cow says 'moo' and that a monkey says 'ooo-ooo' and an owl says 'hoo-hoo.'

Erin's 18.5 Month Update

Erin has become such a big girl!  To start, I want to share that she is eating more food which means we have reduced the amount of tube feedings! This is VERY good news and great process!! Erin LOVES blueberries (she says 'blue, blue'), strawberries, any crackers, chocolate pudding, dry cereal and ice cream.  She will eat grilled cheese, cheese, chicken nuggets, yogurt, waffles, pancakes, scrambled eggs, avocados and canned peaches.  These foods are all hit-or-miss as far as the amount she will eat at a given time.  Sometimes it's a few bites and other times she will eat a substantial amount.  She is willing to try food (more than her brother is willing).

Her amazing feeding therapist, Linda, has taught me how to help get more calories in Erin's food.  She has also taught me how to thicken her Pedi-Sure or chocolate milk with yogurt to make it honey thick so she can drink it safely.  If  Erin doesn't want to drink from a sippy cup or with a straw, then I will spoon feed her the liquid.  She can take anywhere from 1-4 ounces in a sitting. This is amazing progress for a tube fed kiddo! Since she is doing so well, the nutritionist decided to reduce Erin's tube feedings from 24 oz of Pedi-Sure per day to 12 oz of Pedi-Sure per day.  We give her 8-12 oz of water in addition to the Pedi-Sure.  Some meals are better than others so I adjust how much to give her via the tube based on how she has eaten.  Right now, it's a balancing act to make sure she gets necessary calories and water but allowing her to feed herself. We have made so much progress this summer! I am proud of Erin and of myself for coming so far.  Last week I got teary eyed when I looked at Will and Erin sitting on the floor and drinking from sippy cups.  I always dreamed of the day that I could hand my kids a sippy cup and they would drink it.  It was another milestone checked off of our list. :-)
Erin is a very busy girl.  She is always on the go and loves to move! She has figured out how to open her dresser drawers and pull the clothes out. She has started to play with pull toys.  This morning she was pulling a bug toy behind her as she walked around the house.  She got frustrated when it got stuck on the play door.  She stood there and 'yelled or squaked' for help until I stopped what I was doing to free the bug.  When I did, she was happily on her way.  We have an Elmo doll that laughs and moves all around.  Whenever Erin sees Elmo she starts laughing.  We were at the shoe store today and she saw a picture of Elmo and started to laugh.  We also have an Elmo book that she laughs at.  It's not her normal laugh, but rather a high-pitch laugh that is saved just for Elmo. 
Erin LOVES to read books.  She grabs a book, turns around and backs up into your lap.  If I am doing something, she will bring me the book at say 'buh.'  I always stop what I'm doing (wouldn't you?) and read her a book (which is usually just the first two pages).
Erin is starting to say words.  She understands the 'b' sound and has different b sounds for various items (bubbles, blankie, bog (dog), blueberries (blu), ball (ball)).  Erin understands SO much and it's so much fun for us! When I ask who wants to take a bath, she runs to the bathroom door.  I ask who wants to go outside she runs to the backdoor and stands there yelling for me until I open the door.  She too can follow simple directions.  The other day I said that I was going to turn off the TV and she went over and tried to reach the button on the side of the TV. I have to add that I didn't even know that she knew that this button was here because we rarely use it.
Erin gives big, open mouth kisses, waves bye-bye, blows kisses and will kiss anything you tell her to kiss.  She loves our dog Clark and she's getting better at petting him gently.  When Erin see Clark's leash, she will take to it him and try to put it on him (just like we do).
She LOVES to dance.  Whenever Erin hears music she starts to move her chubby, little arms around.  When we were at the mall there was some music playing in one of the stores and Erin started to dance. I can't help but laugh because sometimes I don't even hear the music, but I know it's there because she is dancing.

As much as Erin is on the move, she is also our snuggler.  She loves to rock and snuggle together.  She lays her her bed for about 20-30 minutes after she wakes up and before she's ready for me to come get her out of bed.
Erin is so much fun.  She is a girl who knows what she wants and goes after it.  If she wants a toy, she has no problem pushing Will down to get what he has.  She is strong-willed and super sweet. Erin keeps us on our toes and we love every minute of it!

Will's 18.5 Month Update

Will is such a big boy!! He is always on the go and loves to play with trucks and cars.  He loves to push and pull toys around too.  He will find something to play with (small toy, block, water bottle) push it and then crawl after it.  When he catches up to the toy, he will push it again and then chase after it. I've never seen Erin play this game. It has to be a 'boy thing.'  Will can play independently for about 30 minutes.  Yesterday, he woke up from his nap before Erin and he just played by himself.  He pushed around his cars and new truck. He filled the shopping cart and pushed it around.  He read some books and played with some toys. I was shocked at how independent he was and that he was able to keep himself occupied for so long.  When Erin is awake they interact all of the time so I don't see this side of him very often.

Will loves to dance! He has a few toys that play music and he pushed the button and starts bouncing up and down.  He will hear music anywhere and start dancing. It is very cute to see his little arms move and his legs bounce up and down.

Will is still a very happy boy and has become quiet silly.  His new nickname is 'Silly Willy.' Will has a 'shy guy' face that he gives to strangers. He will put his head on his shoulder and look up with these shy eyes.  Then he'll crack a smile and play coy.  It is so cute and I can't help but laugh when he does this. 

Will has started to babble all of the time.  We were at the mall this morning and he 'talked' the whole time we were shopping.  When he wants something he will reach for it and say 'thank you' (which sounds more like 'tank tou.'  The other morning he handed me his blankie and said 'blankie' as he handed it to me. 

I am constantly surprised at how much Will can understand.  He is able to follow one step directions. It is fun to ask him to do things and he will actually do it. For example, he will hand us things, play with specific toys or do something.  When you tell Will to give a kiss he will lean his head towards you and want you to kiss him. It is very rare for him to actually kiss you.  He does blow kisses and wave bye-bye.

Will loves to chew on everything! He has all of his teeth so I know it isn't because he is teething. I think it's just how he takes in his environment. You can see that he is holding bubble wands in the pictures.  That is because they just wanted to bubble wands and not the bubbles.  I ended up buying a 25 packs of just bubble wands for the kids to play with.

Will continues to be a VERY PICKY EATER!  This is really frustrating for me because I want him to eat more food.  He likes applesauce, chicken nuggets, pieces of avocados, crackers of any kind, yogurt, whole milk, bananas (not cut up buy in the peel so he can hold it), Nutri-Grain Bars, dry cereal, cheese (which is one of his favorite words to say), chips, blueberries, chocolate pudding (as you can see in the pictures), strawberries and Stage 2 baby food vegetables (this is the only way I can get veggies in him). I am ready for the day when I can put anything on his tray and he will eat it.

I should add that Will loves to read books, play 'Patty-Cake', points to his nose, will moo like a cow, loves to be in the water and play outside!