Tuesday, March 29, 2011

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!

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