Tuesday, March 26, 2013

Whew I can't believe two weeks has already gone by since I dropped Grant off for his first day of school. My apologies for it taking so long to update it's been a crazy 2 weeks.

Grant's first week went pretty good. His first day he didn't even cry when I left his classroom. He was such a big boy. Mom saved the tears for the car :) He had a rough day but that was mostly due to everyone not knowing Grant and Grant not knowing them yet. The next few days brought more and more tears when I dropped him off but all smiles when I picked him up!

The second week got a little better. The crying took a little longer to start. He made a friend and someone he really looks up to who is a little over a year older than him and also has CP. His new friend is Grant's inspiration who encourages him during their joint therapy sessions!

I love that my little man is going to school but it's still so weird those few hours that I don't have him here with me. He was attached to my hip for three years and now I kind of feel lost without. But I feel so good knowing he's in such great hands. 

Here are some pictures from his first day of school:

 I told you he was all smiles!

 His teacher and his own para!
 Yep he was happy :)

School picture day is tomorrow and me being a photographer this is the first time my child's school picture will be taken by someone other than me. I take the pictures at Matthew's school and get the pleasure of taking his but Grant's will be a different story! I have a handsome outfit picked out and can't wait to see how they turn out!

Monday, March 11, 2013

And the last page turns....

Tonight the last page in the first chapter officially turns and the chapter is over. This chapter was filled with so much emotion! From the very first moment I found out I was pregnant to the last kiss goodnight tonight I remember every second...every emotion as if it all just happened!

I remember the beginning...the excitement of being pregnant. The wonderment of what we will be having...the joy at finding out it was a boy...the images of watching our sons play in the front yard. Then the pure devastation and fear at finding out before our baby boy was even born that he would have Cerebral Palsy. Doing all the research...crying myself to sleep night after night...wondering what this would mean. How would Matthew handle it...how would Ryan handle it...how would I handle it.

Then he was here...his day arrived...I remember hearing his first cry...seeing that precious face peek at me over the curtain...having him laid on my chest and feeling the tears roll down my face. I remember the worry, fear, excitement and joy of wondering what happens next.

I remember the pain and anguish as I walked out of the hospital and half my heart had to stay behind. Waiting at the door as a couple was all smiles bringing their baby home and mine was still in an incubator with "tanning" lights on him. I remember visiting him every day for hours. I remember walking in and seeing that huge, elaborate needle taped to his forehead so that he could have his 7th blood transfusion of his young young life. I remember being taught how to use the apnea monitor that would be attached to him for the next two months. I remember the overwhelming emotion when we finally got to bring our baby home 18 days after bringing him into the world.

I would love to play out every event in his life this way but I think you get the idea. I remember EVERYTHING that has taken place over the last three years and one and a half days :) But what I remember most is all the smiles I have had spread across my face because of this amazing little boy that I have been so incredibly blessed to call MY SON. He has taught me so much in his mere three years. More than anyone could every teach me in a lifetime. He has inspired so many other people as well. We walk through a store with him in his grocery cart chair or kid kart and he gets more smiles than ignorant stares. Everyone says hi to him. Everyone smiles him. Everyone is touched by the way his face lights up!

This little boy has inspired me in so many ways. He has never ever given up. He has fought through every obstacle he has had to face with a smile and determination! He has every reason in the world to just want to lay around and cry and be upset all the time but he is the complete opposite! He is truly amazing!

So as I drop him off for his first day of preschool tomorrow I will be strong (I hope!) I will pray that he knows I am not leaving him...I pray he knows that I don't love him any less...I pray he understands what is happening. It's hard and it's my fault because the only people he's ever been left with are my parents and I am so scared he is going to think I am mad at him or don't love him as much because I am leaving him. But I know that he will grow to love it. All the ladies (teachers and therapists) already LOVE him just from the few times he's been up there and I now he will be in the best hands besides mine. But as I walk away I will be feeling that agonizing pain that I felt when I first left the hospital without my baby boy in my arms. And with that....we turn the page....

Three Year Check Up

My big boy had his three year check up today. I always go into any check-ups a little stressed out because so much emphasis is put on Grant's weight. Today was no different.

We get in there and of course he is all smiles flirting with the nurse. Then it was time to weigh. This is when my stomach gets in knots. My fingers were crossed. Last night I weighed him and he was at 19lbs 15oz (he's cutting his molars and hasn't ate much the last week) so I was just praying that he ate enough breakfast to get him over the 20lb mark. The scale was bouncing from high 19's to low 20's until finally stopping at 20lbs 1oz! I wanted to jump for joy but the nurse would've thought I was crazy. We get back in the room and she puts the numbers in the computer and of course I get the "Well he's not even on the chart" I just wanted to shout "I KNOW THIS!!" but just smiled and said "I didn't figure he would be." Then she went on her merry way and we waited on his nurse practitioner.

So his nurse practitioner comes in (who is amazing I might add) and looks at his chart. We are going over how much he's grown. Then we get to weight. She asks if any other specialists are concerned about his weight and I mention his developmental pediatrician is and that he started talking about a feeding tube. Then I felt the knife dig way down deep in my gut and twist and twist. I felt like the wind had been knocked out of me. She told me that it is a 99% chance that within the next year or two (but more than likely the next year) my precious, perfect baby boy will have a feeding tube. My heart stopped and I couldn't breathe but kept a smile on my face. She continued to tell me that it's not because he's not eating enough or not healthy or anything like that but just because he's burning more calories than he's eating and it's just causing him to gain weight way too slow. She said he could still continue to eat meals the way he does now that it would just be a used at night and as a sort of snack to give him a boost of calories. They way she presented it and the things she said it all makes perfect sense...but as a mom...IT SUCKS!!!

As a mom I once again feel like I have failed him! I feel like I have failed my baby boy again just like I didn't protect him when he was inside of me and couldn't keep the CP away. I feel like I should've done more...but then I did all I could do. This is tearing me up inside and I have tears streaming down my face as a type this. This CP was not Grant's fault! Why does my poor boy have to keep suffering...why does he have to keep pushing through obstacles...why does he have to keep trying so damn hard at everything...why can't he just get a break. With that being said...if the doctors all agree this will be best for my baby boy then this is what we will do. It will break my heart but I will never deny Grant of something that might make his life that much better! So for now I just pray...and cry...and get over this hump just like we have several others.

Happy Birthday to Grant!

What a birthday weekend! My little Grant Man turned 3 this weekend! I still find it so so hard to believe. I will get into the mushy stuff in another post...this one is all happy!

We had Grant's party on Saturday and it was a blast! Such a great turn out (thank you to everyone who was able to make it)! He had so much fun. He loves "big trucks" so I decided to go with a diesel truck theme. Little did I know at the time that diesel truck decorations were so so so hard to find. So I got my creativity going and manage to make some pretty cute decorations.

I hope you enjoy the pictures :)

 Pin the Wheel on the Truck :)
 Grant gets to go first
 The amazing cake by Linda (always amazing!)
 Singing Happy Birthday...he was all smiles!
 His helpers waiting for him to try to blow the candles out
 Ready for some cake and ice cream!
 Yep it was delicious!
 Opening his presents from his big brother and best friend!
 Love this ornery face!
 Come on in to the Truck Stop
 The goodie bags...they say Ma &Pa Truckstop(Sorry it's so dark)
Happy Birthday banner!

As you can see my birthday boy had a blast!

End of a Chapter

o this week has been quite the week...and it's only Wednesday! (just pretend I posted this on Wednesday!)

This week started the last week in the first chapter of Grant's life. That first chapter of Early Intervention through the First Steps program. What does that mean? That means my little bitty baby boy who was born 4 weeks early and weighed 5lbs 13oz is now going to be a big 3 year old and go to school. He will no longer be getting the therapies he has been receiving through First Steps. All the tears I've cried this week have been mixed tears. Tears of sorrow that we will no longer get those weekly visits from the amazing women in Grant's life but at the same time they are tears of joy. Joy that my Grant Man is going to be going to school! He has come so far in 3 years and he deserves to take this next step...mom just isn't ready! :)

Monday we said goodbye...no wait not goodbye...SEE YOU LATER to Grant's magnificent speech therapist. She has spent two years loving my little boy as if he were her own. You talk about her and his face lights up! She has gone above and beyond the duty of a therapists by helping endlessly to get Grant a communication device that insurance denied him. She even went as far as filling out an application for a grant to get the device and continuing to follow up. She has been coming into our home everything other week for the past two years and we will miss her terribly!

Then Wednesday we had a very emotional day. We started our morning visiting Grant's school, dropping off enrollment papers and meeting his new para that will be with him the entire time he's at school. I am truly so excited for him to start school because all the ladies he will be working with are so excited for him to start. They all seem so great! But it was very emotional walking in knowing that in less than a week I will be dropping my baby boy off and leaving!

Then after that we saw his amazing physical therapist for the last time. Again I say the last time but maybe I should say the last time for therapy :) She has been seeing Grant since he was two months old! It seems like forever ago but yet it seems like just yesterday we were meeting her for the first time. She has been so so incredibly great with Grant! She makes him very happy (unless she's making him stretch) :) And she too has loved Grant as if he were her own. She has been patient during his crying fits and she knew just how far she could push him (in a good way). She worked with First Steps in making sure he got all the equipment he needed and we are so thankful for everything! Three years went by too fast and we will miss her weekly visits!

Then immediately following that was the last visit with Grant's inKredible occupational therapist! Grant was about 7 months old when she started seeing him. I can't even tell you the look on Grant's face when we talk about her. She has been not only a therapist to Grant but a therapist to me as well :) She has helped me with idea after idea on how to help Grant this way or that way or how to adapt this so that it's better for him. She has also loved Grant as if he were her own. She has done things for Grant that not most therapists would do. She has seen Grant at his best and seen him at his worst and still continues to love him. She helped comfort me when decisions were hard and always helped me see the up side. We will miss her something fierce!

After the last therapist walked out the door on Wednesday I sat in the bathroom and cried. I cried for a number of reasons. I cried because my baby boy is graduating from First Steps which means he's getting older, I cried because I am going to miss those ladies. For the first time in this journey I felt all alone. I felt like I had no one. It was the craziest feeling. But I know that in the next chapter awaits things that will far exceed the first chapter. There will be good and yes there will be things that aren't so good but with it all comes the next chapter in the book of Grant!