Graduation Day!

So happy to report that our Christopher no longer has to depend on his helmet! We are saddened that we won't be able to see Laura, she has been wonderful, informative and an amazing instructor along this journey. During his appointment we discussed his progress and had a scan, what positive improvements! There has never been a magic number, but the scan noted the improvements in the areas that were pivotal in his development, and they were impressive! We also discussed increasing physical therapy, his right hip is turning in which is affecting his gait, that is in relation to the torticollis, he is managing but we need to continue the stretches and work a little bit more on this to overcome it.

Our next project is to start planning our fundraiser, we need to continue to educate and hopefully help others who are starting this journey also to tell our story about our Christopher!

Along the way I have been told that I am aware of the changes in my differences in my children, this has been to my advantage, I advise all parents to push if you see a difference and fight the fight all of the way!

"Falling" into Fall!

What a fun filled few weeks we have had! The twins celebrated turning 1 last week, we had a cake and Max loved it, Christopher not so much! We are going to have the family party this weekend and they can show off their walking skills, and show off they will! Right now they are both battling a low grade fever, maybe associated with new teeth, or like the rest of the world a little cold in the making. I can tell with Christopher he doesn't feel well, he is intolerant with his helmet, its just another nuisance, along with a runny nose and interrupted sleep.
Crossing the 1 year milestone is a really happy feeling. Both boys are healthy and on track developmentally, 6 months ago that was a nagging worry for us, will Christopher advance with Max or fall behind, and happily they have progressed and continue to amaze us!
I mentioned that they are walking and they love to do laps around the house all day, follow the trail and you know exactly where they have been, they are a little bit like tornadoes, don't get in their path, and clean up is an all day affair!
They have graduated from formula as well, what a great feeling and not to mention savings, I did a little celebration dance at Sams Club the other day, just think in a few years I will be finished with diapers as well!
We go to the doctors for their 1 year appointment next week along with another appointment with Laura at Union. We are still meeting once a week with Sara, he is getting to be a little bit of a handful now that he walks, but she gets him to do his stretches and works him out!

milestones

I am spinning with all of the activities that have been happening around here! The twins will be 1 at the end of this month! That means Christopher's starband journey will be wrapping up and it seems like we just started this process! His progress has been positive and along with his teeth, 5 at last count, he has also started taking steps and saying mama, dada and claps his little hands, he is quite proud of his achievements along with his brother Max, they are each others biggest fans!

We have had great success also with Sara, he is starting to show his strength in his legs and his neck, holding his tilts and balance. What we think is playing, Sara has stressed the importance of little exercises that will help him in the future.

Ave' and Sophia started a new school this year, they are attending St. Gabriels and have adapted to the new school with smiles and excitement. Sophia started all day kindergarten and I struggled the first few days, she went right to it and didn't look back, well she did, but she did it with a smile and my heart melted to see my little girl being so brave! John Morgan started pre-school and wanted Johnny to take him and me to pick up, he told me he was okay mom and off he went waving like he did this everyday!

So I am home with my 2 little ones and think I am the luckiest mom in the world. I have these beautiful little ones, confident and independent older ones and smiles that greet me everyday.

I have a voice!!!!!!!

Christopher has found a new way to get your attention, scream!!!! He is loving it too, he will scream from wherever he is to see who will get there first! I am usually greeted with the sweetest smile to go with it though! He is getting very big, he is on his 3rd tooth, and we will remember each one! His mouth is completely healed from his surgery and now he wants to gooo! We have been extremely busy these past few weeks, and it looks like it will not be letting up! We just got back from our family vacation, we went to South Carolina and it was a wonderful trip, the babies were perfect in the car and at the beach, they loved the craziness at the beach house with the entire family, we had to pack everything including the kitchen sink, (just kidding)but we got there and back safely, rested and refreshed. Christopher had an appointment with Laura from Union this morning and she noted there was some forward growth on the right front, not sure why, but made some adjusmtents and will check back in 1 month and see how he measures. Laura also noted that he has approx. 2 more months in the helmet. You can really see how he has changed in the past 6 months. There were 3 other little ones in the waiting area this morning, all smiling and laughing, we love our club!

Surgery.......

Christopher has an appointment tomorrow morning to "fix" his tongue! Christopher is tongue tied so 9:45 am we are going to get it snipped! He has no idea, but I am getting anxious for him! Dr. Simon will have to use general anesthesia, due to his age, but says it will take 15-20 minutes. The remarkable thing about your tongue, it heals within 24 hours! If we leave his tongue the way it is, it will lead to pronounced speech problems. Ideally, this is done when they are younger, then you don't have to be put under, but with everything else this little man has been going through!
We met with Sara, our PT on Friday and this morning, and today proved a little more challenging! Christopher wants to be on the move, trying to get his stretches in were a team effort, and we are trying to get him to use his left arm more for development purposes. We are trying to get him to extend and reach upward. The only constant with Christopher is that he goes right down for his nap afterwards without any problems!
Also wanted to add that Christopher got his first tooth! It explains a lot!!!!!!!
We are getting ready for a much needed vacation next week, the older kids are getting excited, I am too. I cannot wait to see what the twins think of the beach, and getting pictures of all of them on the beach, will make it worth all of the preparations and planning.

Progress!

I cannot believe that yesterday was Christopher's 3 month appointment. The improvements are significant in that short time. If I had the computer skills and the equipment I could display the scan for you today, but that will be at a later date! Our first scan was taken on April 12, it showed that Christopher was a candidate for a CRO, and that he was measuring a difference of 13.1 mm, his 3 month scan showed improvements of 8.4 mm! The scan takes around 11 seconds, and he was completely unaware that he was being measured! It is then transferred to a computer that recreates a 3d image on the screen, it is wild to see a 3d image on the screen floating around of your baby! Imagine an X on the top of your head, that's how the measurements are taken, so its on top of the head if you will. The growth was exactly where we needed it, above the left front and the right rear, and the growth stopped on the right front. The right frontal growth would have contributed to facial malformations that couldn't be corrected in the future that was part of the urgency of getting the helmet. Laura also noted that he is still pulling his head to the left, his tort, and she gave me some helpful suggestions on holding him to get him to strengthen the muscles in his neck. Now that he wants to be on the move and not held, his physical therapy is crucial in his continued progress. We are thinking he will be wearing his helmet until his birthday, which is September. We are so proud of his progress!

Wow, 9 months old!!!!

What a whirlwind last few weeks! Friday, the 25th was Max and Christopher's 9 month birthday! Sara, our PT was here in the morning and did some work with the ball and lots of stretching, she is amazed at his progress, he is doing so well! I need to continue the stretches and encourage him to take side steps, he is a busy body and always on the move. He also had his evaluation. We then went to his appointment with Laura at Union and found out he corrected almost 3 mm, a very impressive number! At the first scan and consultation Christopher was measuring 16 mm difference, he has corrected a total of 6 mm, thus far 10 to go. His next appointment will be the comparative scan and this will show us the difference on paper, I am looking forward to seeing the differences.

This morning was his 9 month physical with our pediatrician, and his first time being seen with his helmet. He is now 18 lbs, 10 oz, and 26 " tall, his twin brother Max is 19 lbs and 28" tall, he squeaked passed him. At his appointment we also discussed getting him seen to address his tongue being tied, another little "thing" to schedule.

This summer is going by quickly between the bouts of rain, and logging in some impressive swim time, I joke, I take that helmet off and he is a wild baby in the water! There is an added bonus to the helmet, he is used to having something on his head he doesn't mind wearing his sun hat, Max on the other hand wants nothing to do with it and then removes Christopher's as well!

Over the weekend was our DeMare family reunion, we did an Amazing race through pittsburgh, taking pictures at various places along the way, it was a blast and the funny part was how many said hi to Christopher because his name is on his helmet!

Loosening up!

Sara, our PT came for her weekly visit this morning and is very happy with Christopher's progress! He held mid line position of his head up to 10 seconds while playing in a sitting position. He also tilted right up to 75 degrees during strengthening! He is also using his left arm a lot more! This is positive progress and continues to improve his mobility everyday, which means he is on the move and not looking back! He and Max have entered " freedom mode" they both love to be on the floor in the action with their brother and sisters! Christopher's newest move is standing in his crib and singing at the top of his lungs, no matter what time it is! Looking forward to our visit with Laura at Union on Monday. Speaking of Christopher, he just woke up, time to gooooo!

Ear infections, Graduations and Celebrations!

It has been a whirl wind few weeks around here, between dodging torrential downpours and enduring the humidity we managed to get in a few parties and doctors visits! Max has been fighting his ear infection, on top of teething, its been an experience!
Ave' and Sophia are both graduates, we are so proud! They wanted to go out to dinner and celebrate!
We were able to enroll the girls at St. Gabriel's for the next school year, it was a very big surprise and we are so thankful! The principal said mothers of twins deserve special blessings, she gave us one!
John Morgan is still getting into everything, still managing to test the limits and be adorable while doing it!
Christopher loves singing, he sings all day, and loves to watch the cars go by, John Morgan used to do the exact thing! Christopher woke up last night and completely sat up on his own, no assistance and laid back down, I could hardly believe it! He has mastered crawling as well, we are in trouble over here!
I was worried that the helmet was going to be bothersome with the heat and to my relief Christopher is doing well with it, he is so easygoing!
My cousin Meg complimented my blog, I feel so blessed to have so many people supporting us on Christopher's journey, he is such a special little one.
Observers note, I use a lot of punctuation marks!! lol

I read about you Christopher!

This has been a very busy week here in the Kozar household, actually everyday is busy! Nonetheless, it has been a productive week as well. We met with Sara yesterday, our physical therapist, and she is encouraged by how well Christopher is doing. He is getting stronger by the week, and more confident. He has begun to crawl, not quickly but slowly figuring it out and then lunging forward to retrieve whatever he has his sights on. Max is right on his heels, they are adorable but really what will I do when they are on the move!
Our visit to see Laura at Union was also very positive. She measured another mm of growth in the back right it was 1 whole mm! They are changing the format of the scan so we decided to wait to post the original. His next scheduled scan is in 2 months so we will be able to compare the first scan and scheduled scan to see the differences that we have been measuring. We also double checked and it has been 1 month and 2 days Christopher has been wearing his helmet.
Since it was just Christopher and I, we went to Mcginnis Sisters and Christopher was recognized from the article in the South Hills Record. He was smiling and singing and the ladies who work in the bakery and deli all read the article and made such a fuss, it was a lot of fun! He is our little rock star! Today was a great day!

Slow and Steady......

Christopher is making great strides with his physical therapy, Sara our therapist is amazing with him. She did work with the yoga ball this week, he loved it! She got him to prop himself up on all fours, and stretch to get what he needed! Max, is a mad man and a very good teacher to his brother, it is interesting how different they are in their development. Max seems to be very quick to figure out how to get around, Christopher takes a slower approach!
I have slowed things down at bath time for Christopher. He gets to have a break from the helmet and he seems to love touching his hair and holding his head. He also seems to sit well by himself in the water and lean to reach toys, he and I are quite proud of his accomplishments!
Today I spoke to a mom who is just starting the process of PT and getting the helmet, I helped her to relax and it felt great. I also decided it is time to really put the word out there, this is affecting many families and we can all help one another, one mom and dad at a time!
I was also told by my aunt there is a class action lawsuit on behalf of United health care, to be continued.......

Just another Rainy Monday......

Christopher and I had a great visit with Laura from Union Orthotics. Christopher measured 0 growth in the front and 1 mm in the back, which is perfect! Laura adjusted his helmet above his eyes and a little behind his ears.
Christopher's bath time routine has become one of his favorite things to do, he is aware of his hair and keeps one hand on his head at all times! He cracks up when I wash his hair! I try to keep the helmet off for the entire hour, but sometimes its a race to put it on before he falls asleep. I have had to put it on while he is sleeping, not an easy task, but I have gotten pretty good at it and he sleeps right through it! Playtime on the floor is proving to be a little more successful, he is sitting by himself in the tub, but with assistance on the floor, he is getting stronger everyday.

My daughter wore a helmet too!

In my travels yesterday while returning recalled Tylenol and lucky for me purchasing the last 2 bottles of generic, I had a wonderful experience! At checkout I noticed a woman looking at Christopher and she was smiling, I thought it very nice of her, while also wondering what she was thinking, then she said "my daughter wore a helmet too!" She was standing alongside her 9 year old, a lovely blond haired blue eyed little girl with a beautiful smile! She said it was the first time she saw another child in a helmet, and noted how far they have come! She also remembered how hard it was on her, the mom, and that it brought back memories, and confirmed that the babies have no idea! $100 later and a positive experience, priceless! lol!!!

Sniffles, sneezes and crankiness a plenty!

Its been a crazy couple of days, to say the least! Mother's Day was a great day, I spent the morning with my mom, sister Jennifer, sister-in-law Colleen and neighbor Karen and did the Race For The Cure. It was crazy cold, who would have thought you needed gloves in May, nevertheless we finished 1 hour and 17 minutes. I came home and spent the afternoon with the kids and Johnny watching old movies and absolutely nothing else! It was perfect!
We didn't have an appointment this week, they are usually on Mondays, we had an off week.
This is officially the first cold the babies have had, the runny noses and disrupted sleep at night are making them cranky, Christopher has been rubbing his helmet, it seems to be bothering him along with everything else right now, otherwise he is fine. Ave', Sophia and John Morgan are all starting now with the sneezing and coughing, this weather is our of control!
I have to be diligent with Christopher keeping an eye on his temp, if he does develop a fever the helmet stays off until the fever subsides.
Of all things to happen this morning, the furnace broke, go figure, its May! Luckily it was all under warranty! I guess we won't have to service it now in the fall!
We see Sara on Friday, hopefully he will be feeling better!

TGIF!

Another week has gone by, we seem to start the week with Union and end it with Sara, Christopher's physical therapist! He is doing really well with turning his head, still have a lot of work to do with sitting and getting him up on all fours! Max is starting to rock back and forth, this will be getting more interesting everyday!

The girls had their first game this past Tuesday, it was the first time I took the twins, it was strange, nobody asked why he was wearing the helmet, and with him sitting next to his twin brother it was quite noticeable!

I loved the article about alexandrasphate in the South Hills Record, and the pictures were so cute! I went and bought a couple of issues! I am so proud to be involved with this organization.

This Sunday is Mothers Day, and we are doing the race for the cure, I wasn't allowed to do it last year, I am looking forward to taking the kids and spending the morning with them. How lucky I am to have 5 beautiful children, I am truly blessed!

Happy Mothers Day to all of my friends and family!

Just another manic monday!

Today was Christopher's first appointment since receiving his helmet, and he measured 1 mm different! The helmet is fitting him perfectly, very little irritation and already doing its job! He isn't bothered by it very much, he is a trooper!

I also spent the afternoon with Gary and Valerie and Miss Alexandra, being interviewed by the South Hills Record about Alexandrasphate.org, it was really nice to be part of the story, and they got to meet our children! Also, a peek into our busy household!

Getting around town!

We were out and about this weekend, visiting family in Ohio and celebrating my mom's birthday. Everybody agreed Christopher is absolutely adorable in his helmet! We have a busy day tomorrow, Christopher has an appointment for his adjustment in the morning and in the afternoon an interview with the South Hills Record.
I was worried about Christopher being uncomfortable this weekend with the heat, and he seems to be adjusting really well. He is up to 23 hours in his helmet, 1 hour off at bath time. I have to be careful while cleaning the helmet, wiping it out with alcohol, or a mild baby shampoo, and it is imperative the helmet and Christopher's head be dry when I put it back on.
We are so proud of our little man, Max is mesmerized by the stickers, and his older sisters and brother have done such great job looking out for him! I am a lucky mom!

First Night Success!

Last night was Christopher's first full night in his helmet. It was harder for me than it was for him! I was a nervous wreck! I was given instructions on how to clean the helmet and make sure it is dry and Christopher's head is dry, and I have to keep an eye on his temperature, making sure he doesn't get overheated, needless to say it was a long night for me! He was an angel and fell asleep and slept the entire night! I could only kiss his little nose good night :(

Christopher's cranky day.......

Today has been a productive one! We met with Sarah this morning and Christopher did really well, he and Max still need help with sitting, but are getting there! Usually after the stretching and the exercises with Sarah, Christopher goes down for his morning nap, today seemed a little challenging with the helmet and he took maybe a 1/2 hour nap. Needless to say, it has been a looong afternoon! This is really out of character for him, he usually is happy and pleasant so this is not his best day! He still manages to smile at me even though he is annoyed! Personally I think Max is enjoying all of the stickers on Christopher's helmet and the older kids are doing their best to keep him laughing! Other than that John Morgan is walking around with shorts and boxing gloves, Sophia is secretly watching the home shopping network and Ave' is at school! I am getting a little anxious about tonight, whatever happens we will get through it!

Transitioning into the helmet!

Christopher is doing really well with the helmet, if it is on. Getting it on is going to take a little more practice on my part, its very snug so I think it may pull a little on his hair other than that we are golden! Tomorrow is going to be the test, it will be his all nighter! Sophia said it best, mom I can't kiss his little cheeks with his helmet on.......We did a little decorating today and glam'd the band!

Christophers helmet

Christopher received his helmet today. He was amazing, he smiled the entire time, fussed a little while Laura did some adjusting, but eventually fell asleep with his helmet on! His sweet little face framed around the blue helmet is adorable! I was told that its harder on us than it is on them and it was very true today, my heart broke thinking about how he would be, but it didn't really phase him. He wore it on and off today, and again tomorrow for but for longer periods of time. Gradually getting to full time which is 23 hours a day until he graduates out of the helmet. I am looking forward to posting his progress, and his day to day activities!

Introducing Christopher

Christopher was diagnosed with plagiocephaly and torticollis at 5 months. I first noticed that Christopher positioned his head to the right a few days after coming home from the hospital, it was confirmed at his 3 month appointment he should be evaluated. Based on the assessment from Children's Hospital of Pittsburgh, they recommended the STARband helmet and aggressive repositioning treatment.
The learning process began and the ongoing struggle with the insurance company began as well. We were denied coverage from our insurance carrier 6 times, twice in one week! The frustration and the cost of the helmet began a search that brought us to www.Alexandrasphate.org. Talking with Gary and Valerie and reading about their daughter, proved to be a blessing! With the help of Alexandras PHATE we were able to see the other children and learn more about plagiocephaly and torticollis, also, acquire Christopher's helmet.
I am honored to track Christopher's progress and possibly help another family beginning their journey.
Christopher is such a sweet and happy little baby, his smile melts our hearts! He has a twin brother Max that makes him laugh! He also has 3 older siblings, Ave' 6, Sophia 5 and John Morgan 4, all competing to make them laugh everyday!