Trick or Treat

Happy Halloween (a day late) from the UK Wildcats!

This was the first year that we took the boys out to trick or treat. We just went to a small strip of houses. At first the boys didn't really know what to think. The more houses we went to Cohen really got the hang of it. He would say "trick or treat" and "thank you" each time. He was loving it! Bryce started warming up to it to and finally started giving out his smile to some of the people. It was so cute to see how excited they were to have their bags filled.

Of course once we got back they had to have some candy. What stole the show for me was the Pop Rocks. I wasn't sure how the boys would react but Daddy just had to see. Cohen thought it was pretty good, but didn't seem too impressed. Bryce on the other hand was LOVING them. I was shocked! He isn't a kid that has sensory issues, but I still didn't think he would be a Pop Rock fan. I was so wrong. We really did have a wonderful time!

Trauma South Carolina

We never know when life is about to change. How will we react when a situation so horrifying presents itself?

On Saturday I was at my parents house working on stepping stones for the Church playground that was being named in Memory of my Grandmother (who passed away in March). The dedication ceremony was set for Sunday. We were painting and letting the kids play outside, it was a beautiful day. Later in the afternoon Bryce went down for a nap. I put him in my parents bed and we could look right in their french doors to keep an eye on him. I would periodically peek in and he was sleeping away. One of the times that I looked in on him, I noticed that he was breathing heavy. I still wasn't very concerned, he does snore from time to time and I really didn't think much of it.

A few minutes later, I checked again and noticed his shoulder was twitching. I went inside and in the bedroom and saw his eyes open, but something wasn't right. I flipped on the light and saw that he was grey, almost bluish. He wasn't breathing and not responsive. I yelled for my Dad to call 911 and my mom and a church friend rushed in to see what was going on. We attempted CPR (no compressions, just rescue breaths).... Nothing... After a while he did vomit and started to take very shallow breaths. So shallow that I wasn't sure he was really breathing. We ran to my car to try and meet the ambulance. We knew that he needed Oxygen and fast.

Once we met the paramedics, they took over and put me in the front of the ambulance. We were on our way to meet the Air Care team and shortly after that headed to Children's Hospital. The paramedics were able to suction some "stuff" from deep in his throat, once they did this I could hear him cry. Never thought a shrill cry like that could sound soooo good.



At Children's Bryce went through numerous tests: CT scans, Shunt series (xRays of his shunts, catheter placement), blood work, chest xRays...probably leaving some out. His right lung had slightly collapsed, his ventricles in his brain were slightly enlarged and he had aspirated into his lungs (aspirated pneumonia). We also noticed that his head control was a little worse and his eyes were crossed. His left eye has turned in for a couple of years now, but this time his right was also turning in. After much needed rest, both of these issues seemed to correct themselves.

The first night we were in the PICU (Pediatric Intensive Care Unit) - Bryce was stable, just very angry with all the poking and prodding that he had been through. The poor guy was exhausted, the neuro checks every hour through the night didn't help him rest much either. Part of the neuro checks include opening his eyes and flashing a light in them.

On Sunday Bryce was excellent, he was able to rest and eat -just a day of monitoring. On Monday, a repeat CT scan was done and the results were awesome! The ventricles had went down on their own, we could go home. Before we could leave I had to be trained on the rescue drug (diastatin). In the case that this would happen again, it would be a rectal injection to help him through such an episode. I also talked with the Neuro floor manager on CPR and she gave me numerous print outs for CPR and seizures. Then, we were off - headed back home.

No one could tell us what happened exactly. It could be one of two scenarios: 1 - Bryce vomited, aspirated it, couldn't get oxygen and began having a seizure because of that OR 2 - Bryce had a seizure which caused him to vomit and then aspirate. The not knowing if this is going to happen again or if it was a one time episode is what makes me so fearful.

Now - Bryce is fine, like nothing ever happened. Me, on the other hand, becoming that paranoid parent that looks into every little movement he makes. I can't sleep and don't want to sleep. I guess as time passes I will start feeling comfortable again, but I think it will take a VERY long time to get there. I just kept thinking I am losing him - I am losing my Bryce. Then to just hold him felt soooo good. Once again, I can thank God for yet another miracle. There was a reason I went in when I did - if I hadn't then we wouldn't have had this wonderful outcome.

Huge thanks to my parents. My mom has been completely amazing since the boys were born. I don't know what I would have done without her there. She can't begin to know how much she is loved and appreciated! My Dad - thank you for calling 911 and to be able to explain the situation while we were in it. Kelly M. for being there for us and for hanging back to stay with Cohen while we rushed off. Matt (Husband/Daddy)- thanks for being level headed and patient with me while I have been freaking out. To the paramedics, Brad Crouch and countless others : Thank you for taking care of my son --- and me. We really do have heroes in our small community.

As for the name : Trauma South Carolina - this was Bryce's code name since he was airlifted to the hospital.

School's Out For Summer

Bryce has now completed his second session at the Conductive Learning Center of Greater Cincinnati. We are amazed at the results from this session. The biggest change, has been the way that he uses his hands more and more by keeping his hands open and not as fisted. He is able to stand flat footed (instead of on his toes)... this is probably a combination of school and the Botox he got a few weeks ago. Bryce has become more aware of his mouth, especially his tongue. By the end of the second week, Bryce and I really started working as a team. Many of the tasks that we found difficult to do, we were doing (with little to NO assistance from the conductor). I was proud of both of us!

It has been an absolute GREAT four weeks. I had the chance to focus on my boys and not have the added pressures of work. As Bryce gets to now start his summer, I have to return to work. Back to the real world some would say, as if we haven't been in it all along. Bryce will start his next session in September. He has a few appointments scheduled and some in-home therapy... other than that. He has a few months of just being a kid.

Fourth of July Celebrations

We had a very busy holiday weekend, but we all had a blast. Swimming, picnics, s'mores and of course FIREWORKS. We are all exhausted and still trying to catch up on rest. We are at the start of the last week of Bryce's CLCGC session, which means very close to the end of my leave from work. It has been so great to be able to focus on the boys, especially Bryce's therapies/appointments. I will be heartbroken next week when I go back to the other part of my "real world."

Tomorrow Bryce will be starring in his first ever Video Debut. We have been asked to participate in a research video for Cincinnati Children's Hospital. I have been asked other times but turned them down. Bryce was chosen because he met all requirements.... 2 year old, born at least 28 weeks or earlier, low birth weight and has to have CP. No doubt he can check all of those off, but what might just surprise these researchers is that he is TOTALLY blowing the theory the medical professionals had. He is far from the very low quality of life and basically vegetative state that everyone warned us he would be. I wouldn't let this video pass us by, of course we will do it!

Never lose HOPE!

CLCGC Session 2 ends...

So Week 2 of the session has come and gone. It was an eventful week to say the least. Bryce missed a few days because he got sick -- beginning stages of pneumonia. We caught it early enough so he didn't get as sick as he could have. No hospitalization required- thanks goodness!

We have seen so many improvements up to this point. He has much better trunk control, keeps his hands open more and his head control is improving greatly. He can sit independently for seconds at a time. He gets through the 3 hour therapy session with less crying each time. In the picture above you can see Bryce with the Conductor standing and she doesn't have a finger on him! This again, is for seconds at a time..but I don't count. You see people say baby steps -- these aren't baby steps for Bryce -- these are HUGE STEPS!!! I couldn't be any more proud!

He is doing WONDERFUL! I absolutely LOVE this place and Conductive Education. We 100% believe in what they are doing and I know that Bryce will be the best he can, in part, because of this therapy!

Cohen is doing great as well. He talks and talks and talks. He has something new to say daily. He is really becoming such a sweet little man. You can see that twin bond come out in them more and more all the time. Cohen always tries to involve Bryce whether is be when playing, snack time or a simple drink from a cup- it is true that he steals a lot of his toys and gives him a lot of "love taps" every now and again. He seems to be gaining the understanding of Bryce's limits, which amazes me since they are so young. Cohen is such a great motivator for Bryce - I can't wait to see what the future holds for these two miracles!

CLCGC June Session Week 1

Week 1 of the June session is close to an end. We have finally made it to Friday of an extremely busy week. Bryce has already started tolerating the three hour a day (5 days a week) intense therapy program. I am so excited to see what progress he continues making over the next three weeks. He is going to be ending the week with a much needed massage right after class tomorrow. I would say Lucky Bryce, but if you could see all that this little guy has been through this week--- all I can say is it is much deserved!

The run-down of this week... 15 hours of therapy, roughly 7 hours of appointments, 15 (maybe more) Botox injections, a consultation for AFOs, trip to the zoo, picnic and a quick stop at the playground.

We look forward to slowing the pace down for the weekend.

Back to School and much more...

Things have been crazy busy for us lately. Bryce has had a very bad double ear infection for weeks now. His health had improved so it was surprising to hear that his ears were still infection. This news after weeks of being sick, breathing treatments, a long list of various antibiotics. Now we are scheduled to meet with an ENT Doctor at the end of the month. Bryce has also started a new four week session at the Conductive Learning Center. This session he goes 5 days a week from 9am to Noon. I have taken a 4 week leave from work so that I can go with him... It is nice to be off and to focus on Bryce and his therapies, but we have been busier than ever. This week we have had therapy in the morning and appointments in the afternoon. Hoping next week we will have a few afternoons to enjoy.

We were able to take a break yesterday and take the boys to the zoo after therapy and a quick Pediatrician appointment. We all had a blast! The lion roared while we were there... Cohen roared the rest of the way home. It was the most amazing sound. We then went to the park for a picnic and play time at the playground at Sawyer Point. It was a great day!

Cohen is doing great. He is my "chatty Cathy"... He doesn't stop talking and we LOVE it! He talks and talks and talks. It is amazing to hear him. He has gotten very demanding with his new talking skills. SIT MOMMY SIT has become a regular. Maybe I should listen to him more. He has also been going on the potty --- standing up!!! That's our boy.

The next few days consist of more therapy, a second round of Botox and massage therapy. We can't wait for the weekend!

2 Years Old!

Happy Birthday Cohen & Bryce!

It continues to amaze me when I think back at how far the boys have come and how far we have come as a family. We were told on more than one occasion that Bryce would not make it and if he did he would be like a "vegetable." I refused to believe everything they told us, but I would be lying if I didn't say that I never wondered what kind of future we had chosen for him. Fast forward 2 years.... Things are not exactly a walk in the park, but they are far from the grim future that some had described. We live life to the fullest and we will NEVER take the little things for granted. My life has forever changed and I am so very proud of my little family. How lucky we are that our eyes have been opened and we know now the true meaning of LIVING.

We went to the Museum Center today, it was a blast! Cake and presents at home just us!

Saturday we will celebrate with our family and friends. It is so much more than a birthday party, but a celebration of life - 2 lives that we were very close to losing.

So Happy Birthday to my little miracles, may you always be happy and live life to the fullest.

April Session ends - Trip to the Krohn Conservatory

We have had a very busy April. Bryce just completed his first four week session at the Conductive Learning Center of Greater Cincinnati. He has made a some amazing changes over the past four weeks there. He is now using the potty quite often. He probably goes 80% of the time that we put him on it. I have to be honest, potty training was far from my mind and I hadn't yet considered trying with him. Now we just have to work on a sign for him to start letting us know when he needs to go. I hated to see the April session come to an end, we absolutely love this program and it is going to be more than amazing for Bryce and his progression. He will have a break for the month of May and will start back in June. Everyone needs a little vacation. This will give him time to just be a kid - and of course, to celebrate turning the Big 2!

Cohen is doing great as well. He is running around like a little wild man. He is more destructive by the day and talks talks talks. He sure does keep us on our toes- typical 2 year old. We are working on potty training with him as well, but he isn't as fond of it as brother. Still a long way to go, but I guess we will get there in time. Cohen is starting to include Bryce more and more in anything that he does. It is so amazing to see their bond getting stronger all the time. I am so thankful that they have each other.

To end the April session we all went on a field trip with some other kiddos/conductors/assistants to the Krohn Conservatory to see the Butterfly Show. We were able to all four go and we had a wonderful time. That is until Cohen decided to have one of the infamous (2 year old) tantrums.... it was way past nap time for him.

We are Marching for Babies

We are two days away from the March for Babies - we will be walking again for the 2nd year with our family and friends. Our family had a goal to raise $2,000 this year, I am proud to say that we have exceeded that goal. The final dollar amount is not yet calculated, but it is over the goal we set. I used to think often about our NICU experience and how incredibly hard that first year was on me, my husband, my boys and our entire family. The boys will be 2 next month, I just can't believe how far they (we) have come. We went from having very ill, lifeless babies, to 2 little boys who have really grown to develop such special personalities. We were told that Bryce would be more like a vegetable if he lived at all. I can proudly say that he has more life in him than most and his smile lights up everyone that meets him. I hope that the money we raise will help spare other families the heartache that our family suffered for so many months. I would love to believe that prematurity and birth defects wouldn't strike as often as it does, that it would give ALL babies a healthier start. I walk, we walk in honor of our boys and what they have been through, but holding close those who never get to take their babies home. Thanks to everyone for the love and support that they have shown to us!

We will never forget you!

I wanted to post a picture of my Grandma Nancy. I mentioned her passing in the previous post. The woman who thought that I could do no wrong. She was so proud of me and my boys. She will never be forgotten and her memory will live on.

Conductive Learning Center

Bryce started at the Conductive Learning Center today. We decided to change "schools" since Matt and I felt this would best fit Bryce's needs. It was hard leaving Perlman and the friends that we have made there, but the time was right. We had hoped to go ahead of time to see what a session would be like, but things have been so hectic we didn't have a chance to. After Day 1, we are very excited and we both feel that this is EXACTLY what Bryce needs. Last summer my Grandmother had read an article about the Conductive Learning Center, located in Covington, in the newspaper. We had already decided to attend Perlman at that time. We got the call last Thursday that Bryce could come on Tuesday of this week. My Grandmother died the next day (on Friday). I know that she would be very excited for Bryce (for us). We have another Angel helping us from up above!

Botox Round 1

Bryce had his first round of Botox on Monday (03/21)... He had a total of 11 sticks. Poor guy wasn't too happy about it, but as soon as it was over he was all smiles again. I can't believe that any one out there has a personality quite like his. He is simply amazing! Bryce has been eating great and FINALLY gaining weight too! At his last check-up he was up to 19 pounds 1 ounce!!! Go Bryce. I had two goals for him before turning 2 - to be at least 20 pounds and to be crawling. He is so very close to meeting both of those. So exciting to see him changing so much.

Cohen is doing great- we are entering the Terrible 2 Tantrum phase a little early. He has his little fits and beats on brother - and of course- is completely destroyed when you get after him. He LOVES to be outside. I don't think we will be able to keep that kid inside at all this summer. It will be so nice to be outdoors more!

Happy St. Patrick's Day!

March for Babies 2011

It is that time of year again - March for Babies 2011 is on April 17th!
1 in 8 babies are born too soon.

Walk Distance: 6 miles
Registration Time: 8:00 AM
Start Time: 9:00 AM
Location: Sawyer Point

Every day, thousands of babies are born too soon, too small and often very sick. Our team is walking in March for Babies because we want to do something about this. We walk in honor of Cohen and Bryce, for what they have been through and what they will go through. I would hope that no other family would have to experience what prematurity can do. Let's walk to try to lower this number!

If you can't walk with us, please help by donating to our team. No donation is too small. We will also be announcing some additional fundraisers in the coming week. Thank you for helping us give all babies a healthy start!

To find our team page go to http://www.marchforbabies.org/ and search for Team Croley Twins.

The mission of the March of Dimes is to improve the health of babies by preventing birth defects, premature birth and infant mortality.

Bryce at School

For those of you who don't know... Bryce attends the Perlman Center at Cincinnati Children's Hospital. It is a therapeutic program where he receives Speech, OT and PT. He started the program back in August but we had to pull him out for a month this winter. He was getting sick every other week - when Bryce gets sick he stops eating and takes forever to bounce back.

This is his second week back and as you can tell- he seems to be loving it. Serena is pictured with him. The have become great friends and we have come to love her and her family. They are also from Kentucky!

Bryce is going through a phase right now of wanting to be on his feet. We are so excited that he is showing so much interest in walking. He scissors a lot with his legs (steps foot on foot) but he is so strong willed. This is just the beginning!

Thanks Juliette for sharing the pictures!!

First Hair Cuts

We took the boys to get their first "official" haircuts on Friday. (I say official because Bryce has had a few haircuts, but this one was by choice.) I was expecting complete meltdowns but both boys surprised me! Cohen had a total of 3 suckers the short time he was in the chair. Bryce was a little more unsure of what was happening and wanted nothing to do with the sucker. We didn't get the best "after" pictures, but they look so darn cute!

Thanks to Sandy Godman of Country Cuts & Curls!

Update on the Braces

So we were all very happy with Day 1 of the braces. Bryce seemed to be very excited to stand (which was VERY surprising). However, Day 2 he decided that he HATES the braces; hates to wear them, hates to stand in them. I know it can't be fun for him, but I really hope that he will give in just a little. He is so strong-willed!

Bryce has also turned a bit of a corner with some of his eating habits. He actually ate a chocolate chip cookie, chili, pimento cheese and some pasta over the past few days. It is so unreal given he wouldn't each much more than sweet potato baby good. I think he finally decided that there must be better things out there.

Cohen is doing great... He continues beating up on his brother, running around like a mad man and demanding all attention from everyone in a room. Typical boy I guess.

Standing Tall

Today was a very big day for us.... I have been working from home the first Thursday of every month. I meet with our CDO Support Broker and Bryce's physical therapist (aka Mr. Dan).

Mr. Dan has been with us since Bryce came home. Bryce has always hated PT but is starting to trust Mr. Dan more and more each week.

Bryce's braces came in, so today was Day 1 of trying them out. Mr. Dan had Bryce standing at the coffee table. It was amazing to see Bryce standing there with very little assistance. You could see the excitement in Bryce's face. He knew he was standing tall like a big boy! After a while, Mr. Dan just let go. I have to admit I was nervous but just sat on my hands. After all- we have to start somewhere.... For around one minute Bryce stood there all by himself. Once I realized what was actually happening, I told Matt to hurry and grab the camera. We only caught a couple seconds of the moment, but I will never forget any part. I couldn't get the video to load so hopefully Matt can figure this one out later.

It was so exciting and so unexpected. We were so lucky to have all been home together...even Cohen knew that something exciting just happened! It's moments like these that keep us going! I was so proud to see my little peanut standing tall today. He continues to surprise us every day.

Ready for Spring

So I promised myself that I would keep up with the blog this year - Not off to a very good start.

We had a wonderful Holiday Season, but we are more than ready for Spring's Arrival.

We had to pull Bryce out of Perlman (his therapy school) for a few weeks. He has been sick a lot through the winter months. It is more important to keep him health right now - he will continue his in-home therapy. Hopefully he will be back there with his friends soon. We really do miss them! Bryce is up to 17 pounds, 15 ounces (so close to 18 pounds...finally!). Bryce had casts done of his legs and his braces should finally be in sometime this week. I am sure he will love us for those.

Cohen is ALL BOY! He is running and climbing on anything and everything. We call him our "Little Bruiser." I probably don't need to explain why. He is talking more all the time and really helps out with Bryce. It is so cute to see that brotherly bond at such a young age. I can already see that he is going to be so good to Bryce.

I wanted to send a note to everyone and let you know that we have started our fundraising for March for Babies 2011. I am hoping that our family can raise over $2K this year- we are already over $500. Please let me know if you would like to join our team.. I would love to recruit more walkers. Last year we had 13 - It would be awesome to double that this year. If anyone is interested please let me know.