Had a Freak Out Moment!

So we got the letter that Dr. Hoffman always sends to Grant's regular pediatrician. I am reading it so proud and with a smile on my face because of all the great things he is saying about my little boy. Then it comes to the part that he says that he is confirming that Grant has Spastic Diplegia Cerebral Palsy...okay that's fine I'm glad to know that diagnosis didn't change! Then the next line immediately crushed me...he has microcephaly. Wait he has what? Re-read it...yep it says microcephaly. What is that? What does that mean? How is that going to change my precious baby boy? So silly me goes online to check out what microcephaly means...BIG mistake and I knew that!!!

So what does Microcephaly mean? You look it up online and it might as well say "doom" but with some help and advice from some great momma's it basically means "small head". We have been told since the day Grant was born that he has a small head. It's always been small but not one person has mentioned the word microcephaly! I have had a couple people respond to me with mostly good and one not so good response. Of the three, two gave me great words of advice and wisdom and said both their children have Microcephaly and it has not affected them at all. The other woman said that her child's head has grown only a cm each year since he's been born and he is 13. He has problem's associated with it and it broke my heart to hear what she had to say. One of the mom's explained that there are two types of Microcephaly...one caused by an injury during birth or early after birth and the type caused by a genetic abnormality. From what I understand it's the type caused by a genetic abnormality is the one that causes problems so I hope that we are in the clear.

Grant is such an amazingly smart little boy that I don't think this will be a problem! But yet again I did have a freak out moment! I went in the bathroom and bawled my eyes out for about 2 minutes. I wiped my eyes and took a deep breath and walked out of the bathroom and my day went on! :) I think for me it's a matter of we knew about the CP before we even knew for sure he had CP. We expected that diagnosis...but no one has ever said anything about any other diagnoses so to hear that just crushed me because Grant has gone through so much already I don't want him to have to fight any harder or go through anything else! I also had a hard time because the Dr didn't mention anything about this to me while I was in his office and it was hard to read it in black and white and not know what the heck it meant and I wasn't able to ask questions and that was hard. But I'm okay now and no matter what happens and what the dr.'s tell us Grant is who he is and I wouldn't have him any other way!!!

"And I wont let you fall
Don’t be afraid to fall
I’m right here to catch you
I wont let you down
It wont get you down
Your gonna make it
Yea I know you can make it"

I love you baby boy!!

Developmental Pediatrician Follow-Up

Well I know it's been awhile but there hasn't really been much to update on and I've been super busy editing photos for photography.

Grant had his development follow-up with his developmental pediatrician, Dr. Hoffman. I was really excited about this appointment because I really like Dr. Hoffman and I like having an outsiders input who doesn't see Grant every week. I was dreading it at the same time because I knew it would be a lot of crying and I was afraid the Dr. would think Grant does nothing.

Dr. Hoffman walked in and for a bit stayed away. He sat across the room and asked me questions. He had asked about the botox appointment because he is the one who referred us to Dr. Gupta. I told him I really liked Gupta but we were saving botox for a last ditch effort and explained to him about ABM. He had never heard of it and right then pulled out his laptop. He said he wanted to see what it was about and make sure that it wasn't a scam to us. I thought that was great that he did that. Most doctor's wouldn't care. So we got his approval :) and he even asked if he could get ahold of the guy and tell him that we referred him!

After all the questions he tried to play with Grant. Well of course that didn't work so he back up across the room again and had me play with him. Grant did great!! He was so super impressed with Grant and all that he could do. He asked at one point if he was eating baby food yet and I just kind of chuckled and told him what he is eating. Dr. Hoffman was shocked!!! He said most kiddos with CP aren't eating that great at such a young age...so we are very thankful for that.

Usually before he leaves Dr. Hoffman gives us ideas or suggestions of things to work on and he told me he had no suggestions. He said "I don't know what you are doing but you are doing it right."

Hearing that made me feel so good! I give everything I can to Matthew and Grant and I try my hardest to give them both the best life possible. This is a little harder for Grant but he is so happy and besides the obvious CP he is very healthy and to hear someone say I am doing it right makes me feel great!

Our next update will be about our ABM Session on Monday, Tuesday and Wednesday and I'm really anxious to see what he gets out of it this time around. I just wish he would listen because everyone comments on what a bright, smart boy he is and if he would just get over his crying and listen to Chad he could get so much out of it!! Oh well we will work with what we are given at this point :)

I'm Allowed a Day Every Now and Then!

For some reason last night was a rough night for me! I had a moment of sadness and a little bit of anger! I know that Grant is going to do great things one day. I know he will walk even if it isn't until he is 3-4 years old that doesn't matter. I know he will do it!

That doesn't keep me from feeling a little resentment every now and then that he can't do it right now! I am almost always just fine! It doesn't bug me knowing that Matthew was doing so much at 13 almost 14 months. It doesn't bother me when I see all my April 2010 mommas on facebook and see their babies walking and eating and running around! I'm so happy for them. I had a quick breakdown the other day though.

I started watching a new little girl who is a couple weeks younger than Grant. It again didn't really bother me seeing her walking around and playing but for some reason when she sat down in the high chair to eat it broke down for about 30 seconds and then snapped out of it. I remember when Matthew was doing that and eating was my favorite time. It was my chance for him and I to sit down and enjoy each other! This little girl was giving me high fives and we were just playing and then she would put a bite in her mouth. It just made me a little sad that I don't have that yet with Grant! Then I realized that I do...when Grant is in his tumble form eating he plays with me. He smiles at me and "talks" to me!

I also had a bit of a rough time last night. My newest nephew Kayden will be 5 months old this month. My brother sat him down in front of Grant (who I was helping sit) and he actually let go of Kayden and he held it longer than Grant. I wanted to burst out in tears. Again I am so happy for Kayden and Kyle and Alora but why can't that be Grant! He wants to sit and be a big boy so bad and it's just not fair that a baby 9 months younger than him can almost do it better!

I woke up this morning feeling much better! Again I think it's healthy to have those moments of anger, frustration, sadness and resentment. As long as you don't dwell on that I think it actually makes you a stronger person! Grant is an amazing little human being and he inspires me so much! He makes me realize to not take ANYTHING for granted! Even little things that Mattie does mean so much to me! There are so many times during the day I thank God for giving me these two amazing little boys who are so full of love!! :)

Update on Grant after ABM

I realized I haven't posted a new update about how Grant is doing after his ABM!

I really have noticed small changes that will begin to make a huge difference! He barely needs any help rolling from back to tummy and is getting pretty good at actually rolling from tummy to back instead of just rolling because his arms are crossed. When he is on his tummy he holds himself up longer without rolling over and he is very slowly learning how to creep forward!

When holding him we had to watch very closely and be ready for him to fall backwards but now I can hold him further on my hip and as long as I put one arm behind me he holds himself up there! There is not as much supporting that needs to be done. He is reaching out and grabbing at everything with open hands! He never did a whole lot with his left hand but he has been grabbing at a lot with his left hand equally as he does with his right! He even gets whatever he has grabbed to his mouth!

He is extremely vocal!! We never heard a whole lot out of him. He would make noises now and then but that would be it. Not now! He "talks" constantly! If we are eating in front of him he gets our attention, if the kids are playing he is trying to get their attention. I swear the other day in the car he said Mom twice trying to get my attention!

So again it's just little things that are so big! :) I'm so proud of all that he has accomplished and how hard he works. Now if we can get him not to cry when we go back at the end of the month that would be perfect!! :)

Eat Boy Eat!!

So it seems like immediately after Grant's first round of ABM his swallowing and eating has improved greatly! I used to grind everything up for him in a hand grinder and then mix something in with it to make it smooth. For example I would fix chicken nuggets and mix in ketchup and ranch until it was a smoother consistency. As of this week I don't have to do that anymore!! I have been able to fix sandwiches, french toast sticks, mini waffles, etc and just break them into little pieces and he eats them up! He also never really got fruit because you can't really grind up fruit but he can now! He has had strawberries, oranges, bananas, peaches, pears, pineapple! He loves it all! I'm so proud of him and he loves that he gets to eat big boy food!!!

"I'm So Sorry"

"I'm so sorry" is becoming a phrase I am beginning to despise! I'm starting to hear it all too often.

We have this grocery cart chair for Grant that his amazing PT gave us. He LOVES it! He sits up like a big boy and talks the entire time we walk through the store :) Although it's just another part of our daily lives, other people look at it like it's some sort of foreign object!

I have had several people ask about Grant's big boy chair. The first thing I always say is "My son has Cerebral Palsy..." and it never fails before I can get the rest of the phrase out the person is saying "Oh I'm so sorry" like it's the worst thing they have ever heard. I want so badly to ask why are you sorry? Why do you say it with such a tone that his life is doomed? You don't know Grant!! You don't know the smile on his face when we go in his room in the morning. You don't know the way he gets my attention when he wants something. You don't know the determination in this little body. You don't know all that he has accomplished that we were told he would never do! Don't be sorry...don't look at the me with those sad eyes! This boy has brought more to my life than you could ever imagine!

I just wish that more people, instead of looking at me with pathetic eyes, would ask questions. I had one cashier at walmart that asked question after question. She said she's heard of it but never knew what it was. I also had an older woman stop me in the parking lot as I was getting Grant in the car and ask about the chair. She then went on to carry on about a 5 minute conversation with me. That means the world to me when people ask and are actually interested! So the next time you see a special chair in a grocery cart, or a child walking with braces, or a child in a wheelchair please don't stand and stare! Please don't get those sad eyes and feel sorry for the parent, instead ask about it. It means more than you know!!

I won't Let Go!!

So for both of my boys I have a song. For Matthew it is Rascal Flatts "My Wish". I've been trying to trying to find one for Grant that is equally as great! Well I found it listening to the radio the other day. Rascal Flatts (seeing a theme here) "I Won't Let Go" came on. I've heard the song before but never really listened to the words until the other day and I was in tears! My little man is so strong and so determined already at a mere 13 months! So this is my song to him:

It’s like a storm
That cuts a path
It’s breaks your will
It feels like that

You think your lost
But your not loston your own
Your not alone
I will stand by you
I will help you through
When you’ve done all you can do
If you can’t cope
I will dry your eyes
I will fight your fight
I will hold you tight
And I wont let go

It hurts my heart
To see you cry
I know it’s dark
This part of life
Oh it finds us all
And we’re too small
To stop the rain
Oh but when it rains

I will stand by you
I will help you through
When you’ve done all you can do
And you can’t cope
I will dry your eyes
I will fight your fight
I will hold you tight

And I wont let you fall

Don’t be afraid to fall
I’m right here to catch you
I wont let you down
It wont get you down
Your gonna make it
Yea I know you can make it

Cause I will stand by you
I will help you through
When you’ve done all you can do
And you can’t cope
And I will dry your eyes
I will fight your fight
I will hold you tight
And I wont let go
Oh I’m gonna hold you
And I wont let go
Wont let you go
No I wont

I love you Grant!!

We Got His Gait Trainer!!

So I just realized I never posted about getting Grant Man's gait trainer! We got it almost two weeks ago! Even though it still doesn't have it completely figured out...he LOVES it! He feels like such a big boy standing up in it and trying to take steps. He did walk all over the kitchen yesterday for his PT but of course nothing for me :)

I must say seeing this piece of equipment in my house and lugging it with us to my parents every night is sometimes an emotional reminder of Grant's struggles! I sometimes find myself looking at it with sadness but immediately sweep those feelings away and think of it as another step in getting Grant mobile. I never expected to have a special chair for eating, a special chair for bathing, and a special piece of equipment for walking to be consuming my house. It's so funny how you take so much for granted until you are faced with something like this.

That being said we are going to get Grant moving around like crazy in it and hopefully posting a video soon of my little man! For now a picture will have to do :)