Tuesday, March 29, 2011

Oh yea...Botox Appointment

So we went yesterday to meet Dr. Gupta and talk about Botox! Thank goodness Grant's PT Amelia went with us because she helped a lot! Of course anytime I had to lay Grant down or the doctor tried to touch him he screamed :)

I really liked the doctor himself! He was very informative and knew his stuff. He quoted a lot of studies and statistics even from years ago. He quoted studies and publications and made me feel like he really knew what he was talking about! But when he started talking about what all he wanted to do to my itty bitty one year old I was not too thrilled.

He said Grant would benefit most from getting botox in the back of the neck, in his peck muscles, in two spots on his arms for his hands, in his lower back, in his upper legs and in his calves. I think that was it! Really...you want to stick needles into my son that many times!

Not only that but his criteria is that he sees a child for a minimum of 2-3 years and some he could see longer! Grant would get the botox, come back in 6-8 weeks to see how well it worked, schedule to come back three months later for more botox and so on! So every 3-5 months he would be getting botox. It would cause muscles that are already weak, like his neck, to become even more weak which I was not happy about either! When you have a kid that can only hold his head up for a couple minutes at a time I don't want it to get worse. He did say Grant would learn how to build up those neck muscles but how long will that take? Will he get them built up just in time to mess it all up again for the next round of botox?

I have been iffy about botox since I heard about it and it put another check on the con side when the doctor told me that using botox for children with disabilities has not been approved by the FDA! I want something that has been given permission to be used! I just don't feel like there is a reason to put poison into my child's body if it's not necessary. That being said Ryan and I have come to the decision that we are going to hold off on botox and try this ABM first! We will save botox as a very last, have no other options, option!


We had a very busy weekend. We took our trip to St. Charles on Saturday then Sunday was full of bowling, grocery shopping, Toy Story 3 on Ice and driving a lot in snow and yuckiness!! Monday brought great things, though!

First of all it was my amazing Mom's birthday! She is the best Ma I could ever ask for my boys to have! She loves all 5 of her Grandson's (nope no granddaughter yet) with all her heart! She so great with all of them and you can see her joy when they are all together!

So after celebrating and eating Dairy Queen Ice Cream Cake which is Grant's favorite we got home really late! It's 11pm and we are just getting Grant and Matthew's jammies on :) I had just taken Grant's diaper off and was letting him air out for a second. I looked up at Matthew and looked back down at Grant and he was rolled on his side all by himself! He has never done that before but not only was he on his side I could tell he was trying his hardest to keep going! So I yelled at Ryan and we spent the next 10 minutes trying to get him to roll over! He almost had it at one point but Matthew ran by and distracted him. Finally about about 10 minutes he did it!!! GRANT ROLLED OVER FROM HIS BACK TO TUMMY FOR THE FIRST TIME!!! I was in tears! Ryan and I really think it was due to the little bit of ABM that he had done! We will see if he does it again today :) Happy Tuesday everyone!

Our Trip To St. Charles!

We made a 4 hour drive yesterday with the Grant Man to attend a free children's clinic to see what this ABM is all about. The guy took an hour with us to work with Grant and talk to us about ABM. Grant only lasted 45 min (he was exhausted) but in just that 45 min I saw Grant's body move in ways I've never seen it move before! He had Grant's legs twisting and moving in all directions very freely and fluidly. He had Grant's upper body twisting to see an object! I was amazed!! Needless to say this is most definitely something we are going to be doing!

The man told us that he started seeing an 18 month old that could not roll, sit, crawl, stand or walk. He had not been diagnosed with anything. After a year of treating the boy for 5 days once a month he was walking!!!! Amazing, right! I could go on and on with the stories he told me. When I asked him what the percentage of success is he said they don't base it on a success rate...if the brain is able to learn then the kid will do it! Then he went on to talk about how smart Grant is and how he knows Grant will learn great things from this!

So on my drive home I was filled with emotion and as I sit and type this I have tears streaming down my face! I've always known deep down that he will walk. It may be with assistance, it may not be the prettiest thing and he may no be able to go long distances but my boy will do it...eventually. Now all I can think is how possible it is that in a year or less my baby boy might be walking! WALKING!! Not only that but we will get to see him sit for the first time and watch him learn to crawl which he so wants to do!! Amazing!! I can't even put into words how filled with emotion I am. Maybe my boys will both be playing in the yard next summer! Or wrestling around in the living room. Or maybe in about 3-4 years I will get to see Grant play t-ball for the first time! It's funny all the little things you take for granted when they come so naturally and easily. When we had Matthew I never imagined that I would ever wait so long to see results from my 2nd child. Now here I sit with a new found hope and new found inspiration! Through faith and lots of prayers not only from us but from all of you my boy has been given an amazing opportunity! Through Him all things are possible!

"Therefore, since we are justified by faith, we have peace with God through our Lord Jesus Christ. through him we have obtained access to this grace in which we stand, and we rejoice in our hope of sharing the glory of God. More than that, we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not disappoint us because God's love has been poured into our hearts through the Holy Spirit which has been given to us." Romans 5:1-5


A few months back I joined an online support group and I am so thankful I did. One of the mom's on there suggested something about ABM and how it has been working great for her child.

ABM, I thought! What is this and how can it help my child? I was intrigued so I started yahoo-ing like crazy! I wanted to find anything and everything I could about ABM. I found out that it stands for Anat Baniel Method. Anat Baniel is a women who developed this method that uses gentle, innovative techniques to help the brain of the special needs child form new neural connections and patterns that take the child beyond their current limitations. While it is a process, the changes begin happening right away and are often quite dramatic. While she is based in California I knew that I had to look for someone close by that does this method. I found someone...in St. Charles!

I started watching any and all videos about ABM and how it has helped children with all disabilities. I found myself crying watching how miraculously these children learned to walk! I knew this is what I had to do for Grant. I contacted the practitioner in St. Charles (which is just outside of St. Louis which is about a 3-4 hour drive from here). He answered any and all of my questions and told me about a free clinic he was offering on March 26th. So of course we decided we were going to do it! I figured what can it hurt!

I am going to share the link with you to the information about ABM and I hope that you take the time to watch some videos! It's truly amazing to watch a miracle! I hope you all have a blessed day! :)


How Grant's Journey Began

I feel like before I post anything I need to give a little back history of the last year and then some!
So here we go:

We found out we were expecting another baby in August 2009! We were so excited!! The pregnancy started out rough from the beginning. I didn't have any sickness or any of that but a couple weeks after I found out I started having bad pains. I went to the doctor and they drew some blood. The pains turned out to be nothing but what they found when they got my blood results back changed our lives forever!

They found out that I was Kell Sensitized. What does that mean? Well I have Kell antibodies on my blood and Ryan has Kell antigens on his. When I was pregnant with Matthew he got Ryan's blood and had the Kell antigens on his blood. When I had him a little of his blood mixed with mine and my Kell antibodies started fighting of the Kell antigens recognizing them as foreign objects. When we got pregnant with Grant we figured out that he too had the Kell antigen. Since my blood had built up a defense against Kell antigens my blood starting destroying Grant's blood causing him to become anemic. I had to go in 6 times for a PUBS Procedure (blood transfusion for Grant). When I went in the 6th time the doctor told me I set a new record...no one had ever had to have 6 PUBS!

When I went in for one of the MCA Doppler scans to check Grant's blood flow they found him to be extremely anemic. I had to be rushed down for an immediate transfusion. They think it was at that time that the cysts formed on Grant's brain. They kept a close eye on the cyst and it stayed the same...never got bigger or smaller. At first they didn't tell us what this meant for sure. It wasn't until a week before my c-section that they sat us down and explained that there was a good chance that my sweet baby boy could have Cerebral Palsy.

Grant was born March 10, 2010 at 36 weeks. He weighed 5lbs 13oz and was 17 in long. He stayed in the NICU for 18 days due mostly to eating complications. We found out we had to feed him formula at a honey consistency. I still don't understand how he managed to drink that stuff! They did an MRI just hours after he was born. The Neonatalogist came in 2 hours after I had him (keep in mind I hadn't even seen my precious new prince yet) and told us he will have CP, he will do nothing, he will be nothing. We need to start thinking about how we will take care of him being in a wheelchair his entire life. I was appalled! How dare you come in here and say that about my baby!

March 28, 2010 he finally got to come home! Best day of my life besides having him! He was sent home with a sleep apnea monitor which was a huge pain in the butt but a huge relief knowing that I didn't have to worry about him not breathing when he was asleep. He got the monitor taken off on May 24, 2010! We finally got to take home our baby without wires attached.

From then to now has been a whirl wind of events! We had to put him on Zantac for reflux. He would take a bottle and within 5 minutes throw up the entire thing! It was horrible. He is now reflux and Zantac free. In May 2010 we started with his amazing Physical Therapist, Amelia, through First Steps. She is amazing. She has been working with Grant for a little over 10 months now and I couldn't have asked for a better person to help work with my child.

Grant started out wonderful! He rolled from tummy to back right on target and was so alert! But as he got a little older we noticed that when he got excited he didn't kick his legs like most babies. And he didn't reach to grab things like he should have been. And he had poor neck control. It was then that we realized...yes he does have CP! In October he went to see his Pediatric Specialist and he officially diagnosed Grant with Spastic Diplegia Cerebral Palsy! My amazing little 7 month old baby boy was officially diagnosed with CP. It was a very bittersweet moment...it was great to have a diagnosis but at the same time it was words no mother wanted to her about their child.

Grant has made great progress. He started Occupational Therapist with his other amazing therapist, Katie, in October 2010. I could not ask for two more wonderful women to be helping with Grant! Grant has been so close to accomplishing so much! He almost sits on his own and he is trying so hard to crawl! They have already ordered him a mini pacer so that he can start cruising around :) I can't wait until we get it! He also just started Speech Therapy with Mallory. We can't wait to get to know her better. He just recently go him off of thickened feedings and he is on whole milk. He still has to have food ground up. He has a very strong tongue thrust and has a hard time with chunks. He is getting better with Puffs and Cheerios and anything that dissolves in the mouth! He does however love food. If you are holding him (which is highly unlikely because of his extreme stranger danger) he will try his hardest to get the food into his mouth somehow! He LOVES ice cream :) Yep that's definitely the Hays blood in him!

Grant is truly my inspiration! He is so bright and smart and he is going to do amazing things I just know it! Everyday it's something new that he has done or is trying to do that gives me a whole new reason to wake up in the morning. His bright smile and addicting laugh brightens my day! He has so many people that love and support him and that warms my heart. I hope you enjoy going through this journey with us!