Well we have some updates and there really isn't a good way to start, so I will just dive right in. Anyone who has been a follower of our blog might have noticed that Logan has been a bit behind his sisters in terms of development. At 11 months he still does not roll over or sit up. He has trouble eating and using his hands or arms. He is starting to grab at things and will even shake the rattle back and forth. These are all good signs but....
About a week and half ago we had our Developmental Pedi follow up. As expected the girls are great, right on target for the actual age and way ahead for their adjusted age, we couldn't be happier. As for Logan, we kind of knew what the diagnosis would be and this appointment would just make it official. The reason for Logan's developmental delays are because he has Cerebral Palsy.
Cerebral palsy (CP) is an umbrella term encompassing a group of non-progressive, non-contagious motor conditions that cause physical disability in human development, chiefly in the various areas of body movement. Or to speak English, at some point in the womb or very shortly after birth Logan suffered some sort of brain injury, the result of which will leave him with some physical and mental disabilities that will never get worse but never get any better. At this age it is impossible to tell the extent of his disabilities or for that matter his potential abilities. People with CP can have full motor skills but simply can't close their left hand, on the other end of the spectrum some will never walk or talk. The key is to get him as much therapy as we can try to maximize what ever his body and mind will let him do. He is in for a fight every step of the way, steps that will go on for the rest of his life. It will most likely be years before we know the extent of his development, so for now we just wait. For more info on CP check out this Wikipedia page on CP here.
In the mean time we are waiting on some results from an MRI that he had today. Poor guy had to be put under anesthesia. He did great though and we now just wait to hear from the Neurologist hopefully tomorrow. We are still putting together a plan but hope everything will fall into place quickly.
One last thing I want to say, Amy-Jo and I debated whether or not to post this information for the world to read. I fought hard to do so and I thought I should explain why for any that would question my motives. My son is in for a life long fight, both physical and mental that will make even the simplest things difficult. And not to mention this world is cruel to anyone that is labeled as "different" and this could be his biggest fight. I plan to prepare my son for these challenges and as far as I'm concerned that starts with opening up to the world and not hiding behind or denying his disabilities. He is different but that isn't a bad thing. Logan is still a happy boy who is always smiling and laughing. He has two sisters and a mom and dad who love him no matter what, and to us he is PERFECT. The thing I want him to know is he has done nothing wrong, this is just the hand he was dealt and we will teach him to handle anything that may come his way, good or bad.
We're still here....barely!!!!
1 year ago
27 comments:
I think Logan is PERFECT too! Even though I don't know him IRL, He has many opportunities for therapy and you never know what might happen. I am cheering for you Logan! And take advantage of EVERY opportunity that Logan has for therapies, services, etc. Thank you for sharing about Logan...
This brought tears. We've been in similiar shoes with Lucas' enlarged head size and Noah's inability to put on weight. God is good and his plan for Logan is perfect. Thank you for not being afraid to be honest.
B, that was beautiful. Perfect in fact.
Logan is such an amazing boy and I find it incredible how both Cody and Logan, identical boys are both heros in different ways.
He is so strong and so are you guys!!!
LOVE YOU ALL!!!!!!!!!!!!!!!!!
I've never commented but have followed your journey for quite some time. You are all amazing. As a mom of preemie twins (now 5) and with a background in occupational therapy I will just say that kids with parents like you always go far. Your support and plan sound perfect for perfect Logan. I know he will grow to be everything he should be. Enjoy the ride and thank you for sharing.
that last paragraph says it all. logan and his sisters are beyond blessed to have such wise, wonderful, loving, caring, proactive, and sharing parents! logan was put on this earth to do amazing things--for he is TRULY an extraordinary boy.
thank you SO much for your honesty and providing an open door to help others in the same situation. i cannot wait to get to know the sathers better! love you and GOD BLESS YOUR PRECIOUS FAMILY!
suz
That was so beautifully written. I'm in tears and my heart is so full of love for you all.
You two are truly WONDERFUL, loving, BRAVE and strong parents. Logan is so lucky to have you.
AJ, I'm soooo proud to be your friend!
I KNOW that Logan is one special little guy. He's gonna show us all just how AMAZING he is. I look forwrad to celebrating each and every triumph as we cheer from the sidelines.
XOXOXOXOXOXOXOXOXOX
Gen
Another long time follower-
I am so happy that you posted this and did not keep it a secret. I think its important for others to know what you are dealing with because they may be going through the same thing. You guys have such a positive outlook and I would think that could rub off on other people in similar spots.
You have a beautiful family. Logan is perfect and as long as you don't place any restrictions on him he will go further than you ever imagined. I have heard so many stories of kids who had parents that didn't hold them back, and they accomplished a world of different things.
All four of your babies are so lucky to have you as parents. Every child has something to offer the world, and I'll be excited to see what impact all of your children make on the world. Cody is definitely smiling down on you all.
A long time lurker, first time commenter, so hi! all the way from Australia!
What a beautiful post about Logan. I also have a special child in my life, my youngest daughter who has just turned 3. When she was born she baffled Drs, who had told us not to expect her to do anything.
She started in an Early Intervention program but her progress was so slow. She has several diagnosis's (including global developmental delay and brain damage) but she now walks and tries to talk.
As a previous poster said, Logan will go so far as he is in a loving family who will help him reach his full potential! God is good, and you will see that in Logan and the girls : 0 )
Kate
When I was younger, my sister and I took care of infant twin girls, one of which was diagnosed with CP. Therapy was AMAZING for her. She still was more on the severe end of the scale, unable to swallow, speak or walk. But she is now in High School, she uses a computer to speak, she is happy and loving and beautiful. She is very smart and has lots of friends. Her parents were just like you and didn't hide anything, just took the steps to start the journey right and she is perfect like Logan because of it! Best of luck to you! You're great parents!!!
Thank you for opening up and sharing this story with us. I have been a reader and commenter for a long time now, and feel honored that you share such important information with your "blog" friends.
He is just the cutest guy and is loved so much!!
You worded this so perfectly!
He will face bumps in the road, but he will have a loving and beautiful family by his side the entire time!
Thanks again for sharing..you may be helping others cope with this same issue.
Lots of prayers for all of you!!
Great Post! O have no doubt that Logan will exceed every expectation set before him due to the fact his parents and sisters are behind him 100 percent! He also has a large family of friends rooting him on right through the computer screen!! Love you AJ!
Thanks for sharing...we are in a similar situation with our son Landon. He had Grade 3 and 4 hemoraghes, enlarged ventricles, a shunt placed and so many other complications. Now we're starting to see his delays in keep up with the others. Though there are discouraging moments, we need to remain hopeful and give all our babies the best start, no matter what it means! My husband and I were in a rough patch, but your post gave us renewed hope! All things are possible! Thank you!
I read your blog often but never comment. I just want to say that I will be praying for your precious Logan. He is blessed to have such great parents and sisters who love him. Thank you for sharing this difficult news. Through God all things are possible and I'll be praying that his CP although may delay him that he will have a "normal" life.
Love,
Erin in NC
what wonder parents you are to your beautiful children. as parents we fight for our kids everyday, for them to be happy, to love, to learn and to live life. how lucky logal is to have strong parents in his life, who will love him no matter what odds there are out there. you are a wonderful example of what every parent should be. thank you for sharing your life and sharing your honesty. life if what you make of it, not what someone tell you its has to be.
be strong. with love, shawnie
My son has a severe seizure disorder(10-20 tonic clonic daily),global delay,trouble eating solids and lots of other issues. He is now 3 (not walking or talking)and everyday is a fight for him to get through therapies and to see different doctors . He is a blessing he's made me a better parent.You are given what you can handle there will be good days and bad.The stares that we get don't bother me anymore. Get every therapy for your son-feeding therapy,sensory therapy and see if your state has any kind of family support for swings,tomato chairs,weighted blankets or whatever Logan needs day to day. My son has a very good service coordinater that helps us get the best therapists and just stuff we would not know about otherwise. Take Care your children are so beautiful. Kate Smith
I've been a stalker for a while, I don't think I've commented before.. but I wanted to tell you that your family has always been in my thoughts & and will continue to be.
Your children are amazing, and are perfect. Your post brought tears to my eyes & I wanted to take you for sharing.
I have an aunt with CP (she is now 65), the things that she has accomplished is amazing, and the fact that therapy, etc has improved a ton over the years shows how all things are possible.
Logan is already set to succeed in everything, and having a great family behind him every step of the way will make it that much better for him.
Thank You again for sharing the story & I can't wait to cheer him (and your family) on!
I think that is awesome!!! You are Logan's biggest advocate. I have taught kids with CP - they can do anything - it may not be the way Joe Bob would do it but they CAN do it! Beautiful babies you have!!
I don't know what else to say that hasn't been said. Logan has the most amazing parents & 2 cheerleaders to be with him on this path. He will go so far with the love & support you surround him with.
I know too well the path. I have my little miracle & her sisters are her biggest motivators!
Love ya'll,
Misty
I have never commented before, either but wanted to share something. My sister's good friend and roommate from college has CP with severe physical limitations. However, she was valedictorian of her high school, graduated from college (I'm sure with honors) and is currently a middle school teacher!
He is normal for him, whatever that may be. As long as you treat him that way, he will work out the issues of others.
He is blessed with love, caring, hopeful future with parents like you to.
(((hugs))) to all you wonderful family.
Bonnie J.
I can only imagine what you are going through to have the diagnosis confirmed and written down. One of my best friends has cerebral palsy and while every case is different, hence the very real unknown for you still, she has just completed her PhD. Hang in there.
Logan is gorgeous and happy. Sure, life will be trickier for him, but with such a great support network, he'll go far.
I found your blog quite by accident one day, and have been hooked on the updates of your sweet little kiddos from day one! No matter what the doc's say about Logan, he's perfect! Prayers to all!
God has a plan for your baby boy. I dated a young man a few years back. He was awesome the only problem he had was seizures ad his right arm rom the elbow down was pretty much useless to him. At 10 he had his right arm fused into on psition so he could have some use for it to hold things etc.
He was my reason to come back to God after my divorce. He was awesome in his church as a youth leader. He had a college degree and was just one of the best people I have ever dealt with in my entire life. There was no one that could lift someone up to God more than him.
When John was 9 months old and was diagnosed with CP his parents were told to put him into a home..he would not get past teh age of 3 and if he did he would be useless. If his parents would have stopped caing, stopped lovng him it's more than likely that that would have happened. instead theyloved him, worked with him and made him into a great man.
At 26 he died when he had a seizure and no one was around to assist him. When I got the call he had passed away my roommate (who's life he had also touched) and I went to his funeral. At the funeral there were over 400 people who's lives he touched..In the town in which he lived was only 980 people... God gave him to us for a short time for a specific reason...God's perfect reason.
I am so behind on your blog.
B - that was a great post. Thank you for sharing your beautiful children with us and opening up about Logan. You and AJ are such awesome parents and I know he is perfect - nothing can change that. I LOVE his smile - he seems like such a little love muffin :)
I can't wait to squeeze your neck AJ!!!
Muah!
Jac
Just got to this post...sorry.
Found y'all a while back through the Steece's. We are Ags, too!!
Anyway, I got sick a four years ago and was finally diagnosed with epilepsy two years ago. We tried many meds and brain surgery...no help! Then, we found out about the Ketogenic Diet.
It has been such a blessing. I was on toxic doses of meds and still having around 100 seizures each month. Since starting the diet, my seizures have decreased and I'm barely on any meds at all...Praise the Lord!
All that to say, in our research, they are finding that the Ketogenic Diet helps to heal the brain and they are seeing amazing results in Alzheimer's patients, Parkinson's patients, and those with CP! A dear friend of ours has a very extreme case of CP and they are about to start the diet.
We had to fight the docs for almost two years to let me do the diet and we wish we had fought harder in the beginning as the results have been amazing.
You can go to www.charliefoundation.org or www.matthewsfriends.org.
They both look more at the epilepsy aspect. However, research is continuing to show cognitive improvements in many other areas!
Hope this is a little more hope. You are more than welcome to reach out to me at any time. I don't know how to give you my e-mail without it being posted to the site.
Meredith
Hello.....
Right out of high school back in the late 70's I worked in a sheltered workshop for handicapped adults. It was then that I met and befriended a wonderful girl who has CP. She now lives in a western state and has been working a great job for many, many years now. Her work ethic is wonderful and she is a real go-getter. She doesn't talk very well and is in a wheelchair, but she is incredibly bright.
I am sure your sweet little Logan is going to be the same. He is going to grow up to be a very productive member of society. Like your post said, he has 2 sisters and parents who love him and want the best for him. He *is* perfect!! There are incredible opportunities for children with physical disabilities and you are going to be amazed at the strides this little guy is going to make in life!!
I so have enjoyed your blog since before the babies were born and you guys are such an inspiration to me. It's always such a joy to read about the strides these 3 little miracles are making.
Keep blogging.....we love what's going on in your lives!!
God Bless you all.....all of you!!
----Keely in Atlanta, GA
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