Monday, November 23, 2009

9 Months

Ben turned nine months old on Thursday. He now weighs 17.5 pounds and is 28 inches tall. He has grown so much from the tiny little 5 pound baby he started out as. Ben is now eating solids (sweet potatoes are his favorite). He has tolerated everything so far, he makes the funniest faces when he first tries a new food, especially fruit! Most babies love fruit, so they tell you not to start with them because then they will only want to eat the sweet stuff. Not Ben, he acts like it tastes sour or something and almost gags on it at first. We waited to start him on solids because he had a rough start with feeding and wanted to make sure he was well established with the bottle before starting something new. I'm glad we waited because when we did give him solid foods he was ready, he knew just what to do.


Another new thing for Ben is rolling, he figured out how to roll from tummy to back fairly quickly, but just barely started rolling from back to tummy. He doesn't like to be on his tummy for very long. Now that he has figured out that he can get around and reach toys while on his tummy he likes it more and is beginning to roll around to get to where he wants to go. Last week Ben was playing on the floor near his crib and I left the room for a moment and when I came back this is what I found. . .



Ben loves to interact with people, especially Logan who can make Ben laugh by just walking by sometimes! He has the sweetest little personality.


As some of you know, Ben was born with a rare chromosome disorder called 17q21.31 Microdeletion Syndrome. This is where a tiny piece is missing from the 17th chromosome.
The tiny missing piece increases the possibility of developmental and speech delay and learning difficulties. There isn't a lot known about this syndrome due to so few documented cases and individual cases vary. So, even though we have talked with a geneticist twice, we still don't have all of the answers.

So far I would say Ben's biggest challenge is his low muscle tone. He is unable to sit without support and it seems that his muscles get tired quickly. He works with a physical therapist and occupational therapist twice a month, and a developmentalist once a month through the Early Intervention program. All of his therapists are great and have shown me things to work on with him that I would never have even thought to do on my own! It's hard to watch Ben try so hard to do what comes so easily for other babies. But on the positive side, it's so rewarding to see Ben accomplish things. I remember the first time I heard Ben coo and laugh, I almost cried, it was the most beautiful little sound. And the other day when I went in to check on him sleeping and found him sleeping on his tummy, it was the cutest thing ever. He amazes us everyday with the things that he can do. So, do we know what the future holds for our sweet little Ben? No, but does anyone really know how their child will turn out? I love my Ben so much and nothing will ever change that. From the moment our babies are born, we know that we will do anything for them and that doesn't change. I just hope that we will be able to do whatever we can to help Ben reach his full potential.

Saturday, October 31, 2009

Happy Halloween!

We had such a fun Halloween! Pumpkin carving, spending time with family, and eating yummy food and treats. Logan had a blast trick-or-treating with his cousin Devin!

Logan and Ben in their Halloween shirts



Logan's scary face


Logan aka Captain Rex


Wild Thing
so cute I could eat him up!






Our pumpkins




Friday, October 30, 2009

Wild Thing

Ben's costume is finally finished! This was my first attempt at making clothes/costumes and I think it turned out pretty cute. The costume is supposed to be a wild thing, based on one of the characters in the children's book, "Where the Wild Things Are." I couldn't have done it with out the help of my sweet mom who helped me figure out the patterns and helped cut out the hundreds of scales for the pants! Thanks again, Mom! I learned a ton from making this costume. I think if I ever make another costume I'm going to do something a lot more simple! Here it is. . . stay tuned for pictures of Ben in it, and also Logan in his costume.

Front

Back

Tuesday, August 4, 2009

A Very Transformers Birthday


Logan turned 4 years old on July 19th! I can't believe how fast he is growing up! Right now Logan is obsessed with Transformers. His friend X introduced him to them and now he can't get enough of them. We found a website that has tons of Transformers cartoon episodes, it even has the old school ones from when I was a kid, so he loves watching those whenever he gets a chance. It will be interesting to see how long this phase lasts!

Make a wish!
"Cool, that's just what I wanted!" said Logan after opening his Transformers sheets.


Logan in his Optimus Prime helmet. The voice changer sounds a little creepy!
Logan was so into Batman for the longest time. He was excited to get the Bat cave.

With all of the excitement of everything going on, we totally forgot that we still had the bike hiding in the garage to give him! He thought it was a cool bike, but he wasn't that excited about riding it. Maybe after he learns how to ride it better he'll like it.
Logan's favorites as told by Logan:

favorite color: white and blue
favorite TV show: Transformers
favorite movie: Scooby-Doo meets Batman
favorite things to do: play with Transformers, look at Transformers on the computer, play with things
favorite food: cereal
favorite drink: apple juice
favorite book: The Night I followed the Dog
favorite place to go: to the store to buy Transformers, Grandma and Grandpa's house
best friend: Exander

Tuesday, July 21, 2009

The short version

I'm not very good at this blogging thing, I'm way behind on updates again! Life has been busy these last couple of months. Ben reached a lot of milestones. He turned 3 months old and found his hands. At four months he started laughing out loud and rolling over! And about a week before he turned five months he found his feet.
Chris' sister and her family were here over the 4th of July. It was fun seeing them and Logan had a blast playing with his cousins!
July 5th we blessed Ben. Chris gave him a sweet blessing and we enjoyed having our family and friends there.

July 7th Chris and I celebrated our five year wedding anniversary!July 11th was Chris' birthday.

And on July 19th Logan turned 4 years old!!! and Ben turned 5 months old!!! It's so cool that both our boys were born on the 19th, makes it easy to remember, as if I could forget! Pictures of Logan's birthday coming soon!

Sunday, May 24, 2009

Catch up

Nature Center
Logan's preschool had their last field trip of the year a few weeks ago at the Nature Center. At first Logan didn't want to go. He had been sick the week before and he's still not always thrilled about going to preschool, so he tried to use the "I'm too sick to go to school" excuse. I explained that it was going to be fun and told him all about the things he would get to see on the field trip. I told him that they have lots of birds at the Nature Center and he'd get to see them close up. Well, that convinced him, he then got really excited and said, "I've never seen bird faces." Logan enjoyed seeing all of the different bird houses and animals. It was fun getting to spend some one on one time with Logan.

Logan in his "cool dude" sunglasses


Big Smile
It took me forever to finally get a picture of Ben smiling. He smiles all the time, but whenever the camera comes out he just stares.

Silly boys

3 months old!
Ben turned 3 months old on Tuesday. He is so much fun and has such a sweet personality. He is a very happy baby. He loves to interact with people especially Logan. He smiles at pretty much anything Logan does. Some of Ben's favorite things are watching his mobile and moving his arms and kicking his legs. He's doing good health wise too. He went to the cardiologist and the holes in his heart are getting smaller, so he probably won't need surgery to fix them. He continues to grow and gain weight, we'll have a chubby baby in no time!

Sunday, April 12, 2009

Home Sweet Home

Ben came home about two weeks ago after five long weeks in the NICU. We finally have our sweet little baby home and we couldn't be more happy! He came home on Friday, March 27 and we have been enjoying every moment with him. It was a very emotional time for us, having him in the hospital, to say the least. We could not have made it without all of the love and support of all of our family and friends. Thank you all so much! We are so blessed to have such wonderful people in our lives. We are especially grateful for my parents who took care of Logan almost every day so that I could be with Ben. Logan had so much fun spending time with his grandparents. Logan loved playing "Batman" with Grandpa. I wish I could have seen both of them running around the house in their capes made out of aprons, sounds like they had a blast.

Ben is doing great since he's been home. When he came home from the hospital he weighed 6lbs. 10 oz. We were a little worried that he wasn't eating as much as he should because they said to encourage at least 50 ml every 3 hours and at some feedings he wasn't eating that much. We woke him up every 3 hours day and night feeding him and kept a log of when he ate and how much. When he went to the pediatrician on the following Monday he was up to 6lbs. 15 oz! They want him to gain at least an ounce a day, so we were very excited that he was gaining the weight that he needs to. The doctor had us follow up with him in one week and Ben is up to 7 lbs 7oz. He gained a half a pound in one week! Since he is doing so well the doctor said we can let him sleep longer at night (5 hours at a time) so we can get a little more sleep too.Logan is having to adjust to being more quiet around the house. I never noticed how loud Logan is all of the time until we brought Ben home. Logan is so much fun. He gets so excited about things and is just so full of energy that he can't contain it, so we're working on his "inside" voice.

Life is good at the Kelley house again. We are thrilled to have our little family together. We hope everyone has a Happy Easter!

Going HomeGrandparents GrollBig brother LoganGreat-Nana

Be sure to look at the Pixie Pixels blog in the "My Blog List" in the right hand column for more pictures of Ben that Ashley took.

Wednesday, March 18, 2009

Getting closer...

Ben has really improved lately. He is off all of his heart medications. He has also started eating better. He is still breathing fast, but it doesn't seem to be a problem for him, it won't keep him from coming home. What is keeping him in the hospital is that he isn't taking full feeds (where he finishes his bottle every time without any being fed through the tube). Until he can do that for a couple of days he has to stay there so that they can make sure he isn't going to get dehydrated or lose too much weight. Lately he has been taking over half the amount in his bottles by mouth, so he is getting really close to full feeds.

They started having us do some of the things that we have to do before he can be discharged. We had to watch a couple of videos, infant CPR and PURPLE crying (about shaken baby syndrome). They also need to do a car seat test on Ben to make sure he'll be able to handle the ride home. Hopefully, he'll be coming home really soon!

Here are a few pictures of Ben in his cute little St. Patrick's day outfit. Doesn't he look adorable?

Logan's day at the hospital

On Saturday we took Logan to see Ben at the hospital. He couldn't go in the room to see him, but we thought he might like to see the hospital so he could feel a part of what is going on. Having Ben in the hospital has been hard on all of us and we wanted to have a fun day with Logan and visit with Ben too. We decided to ride FrontRunner and Trax to the hospital. Chris' dad and aunt were here visiting as well, so they came with us to see Ben and we had fun spending time with them. Logan really enjoyed going on the train. The hospital has a playroom where patients and family members can play. It had lots of toys and activities. Logan had so much fun playing he didn't want to leave when it was closing.
















I'll be posting an update about Ben soon!

Wednesday, March 4, 2009

Small Update

Ben is doing OK. We spoke with the doctors today and were able to find out a few things. The lab work for the chromosome tests came back normal, so thus far they haven't been able to tie any of Ben's problems to genetics. With the help of a diuretic his breathing appears to be improving some, but it is still fast at times (more often than we want). His Jaundice is improving again as well and will probably be out from under the lights again tomorrow. The improvements in breathing and jaundice will both help with how tired he has been, so that is good. The cardiologist says he doesn't need heart surgery right now, but may at some point in the future. It is not life threatening at this point and they want to see how much can be repaired by his body on it's own or possibly with the help of drugs before they go to surgery. Their main goal at this point is to get him to gain some weight. Gaining weight may help the holes in the heart close up, and if he does need surgery they would prefer he gain some weight before that happens as well. Ben also got examined by the physical therapists today and they will be working with us on how we can help him gain some muscle and strength.

After our visit there today, Melissa feels better now about Ben being at Primary Children's. We both feel he is still in need of special care and he is getting it there. We will try to keep everyone posted on his progress and if necessary, but hopefully not, any setbacks.

Logan is doing well. Not quite sure how much all of this is affecting him yet. He has been spending a lot of time with his grandparents Kim & Kaylene, which he really seems to be enjoying. Unfortunately, because it's RSV season Logan can't come visit Ben. And we are hoping Ben comes home before RSV season ends (usually in April). Logan came to Ogden Regional with us last Sunday, so he could at least be a part of it. Him and I played in the Ronald McDonald Room while Melissa visited with Ben. Primary Children's has certian days when they do activities for siblings, so hopefully we can get him down there to be involved in that. Also, Grandpa Larry will be here later next week for a couple of days, so he should enjoy that as well.

Anyhow, I need to get back to work, so until later, bye, & thank you.

Tuesday, March 3, 2009

Hospital Transfer

Ben was transferred to Primary Children's Medical Center on Monday. He wasn't progressing in the ways he needed in order to come home, and Ogden Regional felt he needed to see the specialists sooner than later. We don't have anything new to report as they are running their own tests and evaluating him. So now he is even farther away from home which is adding to the stress of the whole situation. We will update when we know more and we appreciate all of the prayers & support.

Friday, February 27, 2009

Some Positives & Another Problem.

Yesterday Ben had the photo therapy lights removed & so far his level is holding about the same (it went up a little). He also was put in an open crib. But.... we just found out today that there is a new problem. Ben has been occasionally breathing fast. I guess this morning he was breathing fast for longer than normal and they decided to do a chest x-ray. The results showed he has some fluid in his lungs. They then tested to see if their was an infection and there was not. I was told that they usually will also have problems getting oxygen when there is fluid present, but he seems to be doing fine on that part. So they have hooked him up to some air to help him get more air and maybe help dry out his lungs.

We were hoping he would be able to come home this weekend, but probably not likely now. That's all I have for now. Until later.

Wednesday, February 25, 2009

More Pictures




I have been wanting to put these pictures up for a few days & just haven't had time or didn't have the camera with me to get the pictures off. So here they are. Hopefully Melissa doesn't change her mind about me posting the one with her in it. :)

Ben is doing good. He actually had a feeding yesterday where he was able to drink the whole bottle by himself and didn't have to have the remainder fed to him through the tube. It doesn't happen every time yet, but it is definitely a step forward.






In case you don't already know... you can click on any of the pictures to make them bigger.

Tuesday, February 24, 2009

Some Results...

Well, we spoke with the Neonatologist and he let us know that Ben has a couple of holes in his heart which they say are fairly normal and will probably close up. The problem to be more concerned about is he has an area of his aorta that is narrower than the rest. They said it isn't life threatening right now and he is getting the blood flow he needs, but they want to keep an eye on it and look into it further. So he is going to need to see two specialists down at Primary Children's Hospital now instead of one. Previously he was going to be seeing a Geneticist, and now he will also be seeing a Cardiologist.

But the doctor also confirmed that Ben can come home when his bilirubin levels (jaundice) come down & when he can eat on his own. His levels are lowering and he is eating more, but he isn't there yet. We'll try to post more pictures tonight.

Status Update...

Sorry, we haven't posted sooner. Ben is still in the NICU. Melissa came home Saturday. She is doing well, except that Ben isn't home. He is looking better and eating more. As we expected, he has jaundice so he has to be under the lights (phototherapy). He has also been getting more tests done. He had his second echocardiagram done yesterday. After his first echo Friday, I was told that he has a heart murmer, but it's not bad (Logan had one too). But I was told they found something else in the second echo, and we are supposed to be talking to the doctor today to find out what that is. Will let you know more later. Please pray for him.

Friday, February 20, 2009

1 day old update...

Well, Ben has been sleeping most of the time so far. He has been having a hard time eating, which is still affecting his blood sugars. He is also not regulating his temperature very well. So, we were just informed that he is going to have to go to the NICU. They are probably going to have to feed him through a tube. We have to wait till 5pm before we can go see him and hopefully find out more on how he is doing. We will post more info once we know more.

On a side note we heard Debbie had her baby this morning and wanted to congratulate her and Patrick on June's arrival. We hope everyone is doing well.