Thursday, November 11, 2010

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!

Wednesday, September 29, 2010

"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!

Wednesday, September 8, 2010

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.

Tuesday, August 10, 2010

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!

Monday, July 19, 2010

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.

Tuesday, July 13, 2010

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!

Monday, June 28, 2010

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!