Monday, November 29, 2010

Playdate :)

So, James David had a playdate today! (Not his first, but the first one I'm telling you about! lol). My best friend Sam has a son, Jerrod, 3 weeks younger than James David and we have been going to "play" with them some days. Today however, is the first time they actually paid attention to each other with out screaming. James David thought Jerrod was the coolest thing since sliced bread. He wanted to get at him SO badly. He kept bouncin, smiling, and throwing his arms around (hitting me in the face) he was so excited! Sadly, at this point Jerrod was exhausted and wanted nothing to do with James David. He just stared at him. Every time James David reached out to touch him, Jerrod jerked his hand back. He did not want to be touched. So they just stared at each other. (I swear they were telecommunicating.) 

They may not be able to do much now, but I know they are going to grow up to be best friends. They will be mischievous together and get into a ton of trouble just like all little boys do. I am so glad that James David has a friend like Jerrod to grow up with. Someone who is going to know him from day one. Someone who will see him for who he is instead of his diagnosis. And as an added bonus Jerrod is going to be a huge kid so he can beat up anybody who picks on James David ;) Now we just have to figure out how to get them in the same grade... I'm sure we'll figure something out!

Saturday, November 20, 2010

Shunt Scare

Well yesterday was very interesting to say the very least. James David woke up at about 0600 as normal. He was my happy lil baby (unfortunately I think he's going to be a morning person). I noticed what looked like a tiny zit right on the skin where his shunt is placed. I just assumed since his hair is still growing back it's an ingrown hair, and made a note to keep an eye on it. He ate his belly full and then after layin awake for a bit he snuggled up with his Mimi and went back to sleep. Well from then on out he would wake up a bit and just fuss and fuss and fuss. It was awful. But I had places I "needed" to go, so I figured I would just have to deal with him. I put James David in his car seat and went to grab just a few more things before I left, when he just erupted into screams. I unstrapped him and when I picked up I noticed that all around his shunt was extremely red. His skin that was red was hot too. I'm panicking.

I immediately called his neurosurgery's office. Well just my luck, Dr. Johnston's nurse was out sick. So the receptionist took a note. Then she called me back about 10 mins later bc she couldn't get a hold of that girl and she had me leave a message on her machine. Well an hour later she calls me to tell me that they don't think its anything but a reaction to the glue they put on there 10 weeks ago for the closure of his last revision and they'll schedule him an appt for Monday just in case... But if anything got worse they wanted me to take him to the ER. It took all I had not to flip a brick. How was I supposed to wait almost 3 days when I was certain my son was slowly dying? But I calmly said "Ok, thank you." and hung up the phone.

I was very very upset. I watched James David like a hawk for the next 24 hours. Lo and behold, he's fine... I have absolutely no idea what was wrong with him, but his shunt now seems to be in working order. I have no idea how any one person is supposed to be able to lead a normal life with this kind of worry and insanity, but I guess I'm going to have to try...

Thursday, November 18, 2010


I would like to just take a bit to update on James David. 

He's sleeping through the night now. PTL. He wants to sit up so badly, and he can sit on his own for a few seconds before he falls forward. hehe :) He drools like crazy and everything has to go into his mouth! He is learning to eat with a spoon and absolutely loves it. He "talks" ALL the time, and it is quite hilarious. We are trying to explain to him that when he is eating and when he has his passy in his mouth we can not "understand" him, but heck its not like we can really understand him anyways. He has learned to cuddle. He gets his body as close to mine as he can and wraps his arms around me when he is ready to go to sleep. He has rolled over a few times, but nothing too consistent. 

We have had a few adventure too. He got to pet a horse on Tuesday. James David wasn't too sure about Thunder (who was just as unsure about what he was) sniffing him at first but then he touched his warm, fuzzy nose and instantly his face broke out into a smile. I do believe he is going to like horses. He also had his first bbq :) We spent Veterans day at Grandpa Ray's. 

 4 Generations of Ray Men

It's crazy how much you can love one tiny person. Even though he can't really tell me yet, I know he loves me too. He is growing up and changing so fast. Its truly amazing. But all in all he is doing wonderfully :) Everything is up to speed and he right on target. Of course, me bein his mom and all I'm convinced he's advanced ;)

Tuesday, November 2, 2010

Spina Bifida Clinic

Last week James David and I attended what they call the Spina Bifida Clinic at our local Children's Hospital. Its a day where we see almost all of our doctors there in one visit every 6 months so that we don't have to keep making multiple trips. Very cool because these doctors set aside this day to see only Spina Bifida kids. So not only are we seeing doctors but lots and lots of other kids with Spina Bifida of all ages and variety. We even ran into our two NICU compadres :)

James David's doctor appts. went amazingly smooth. We were there almost 6 hours but we got a lot accomplished. His orthopedic said that James David is functioning at a "mid-lumbar" level (talking about the level of his nerve damage). He has impeccable quad strength, but they see weakness in his calves and glutes. He also has uneven muscle function in his right foot causing it to turn inward. I say all this to say that he will definitely walk ("unless he suffers from severe retardation or obesity") neither of which are looking to be a problem right now. He may need forearm crutches or a cane to support himself, but who cares? My baby will walk! An answer to many many prayers!

For some reason though not as excited as I should be. I find myself picturing James David with forearm crutches and it saddens me. I know the hateful things people will think about him. People will stare. I guess I'm still struggling with the fact that I have a son with a disability. Hi. My name is Brittany, and I have a son with a disability. He will never play football, or be mainstream. Although I'm glad for that because mainstream in this town tends to mean concussions every Friday night and lots and lots of alcohol, I'm still disheartened. I love my son, and I want the best life possible for him. The life I know he will have. I'm still just finding it hard to get this preconceived notion out of my head.

Monday, October 25, 2010

For Once I was Speechless...

James David, my mother, and I all went to Wal-Mart today just to pick up a few things. I was looking at sheets in the baby center and I over heard my mother talking to some ladies about James David. They saw his shunt and were asking what was wrong with him. She told them he had Spina Bifida and the elder one asked what that was. So I,  loving to tell everyone about my wonderful son, jumped in and told them the short, but educating version of SB. One of them stopped me halfway through my approx. 3 min explanation and said very bluntly "I know what Spina Bifida is. I used to work in the medical field." Shocked at her bluntness all I could manage was a meager, "Oh..." Then she looked at me and asked, "Well can't they tell he had this before he was born?" Obviously I replied "Yes," and explained that we were very well prepared for all his surgeries to come. But then she confused me. She looked at me and said, "So you knew about this before he was born?" Again, I replied "Yes," but then added "We found out at 20 weeks." She kind of scoffed at me, and then I realized what she was getting at.

This woman. This stranger. This random lady at Wal-Mart, whom I'd never seen before, nor will I probably ever again, was appalled at the fact that I let my child live. She honestly could not believe that I had not aborted him. She had no adoration for the fact that we chose to overcome the struggles. She looked at me like a terrible person for giving my child the life he deserves. I was speechless.

I merely stated that I would let them get back to shopping and we parted ways. I was numb and hurt. I walked off grabbed my crib sheets and continued my search for Drain-O. The more I walked the more the situation sank in. I walked until I found myself somewhere in the middle of the airfresheners crying. Tears just pouring down my face and I wasn't sure why. Was it because I was angry at the ignorance of this woman? The sadness that there are so many uneducated people in this world? No, I found myself mostly angry at myself. How could I not stand up for my son? There are so many things I wish I would have said. Not ugly things (believe I could have said some, but I wouldn't have). There were just so many things I could have to educate her. Explain to her that people with SB lead full and wonderful lives and that they deserve no less than she does. But no, I just ignored her rudeness and walked away. I was a coward.

Will I ever be good at this? Will I ever be able to stand up for him and his right to live? If I don't stand up for him, will he ever be able to stand up for himself? I just want to be a good mother for him, not the coward I was today.

Laminin: Proof of meaning behind each life.

Its funny. For as long as I can remember, every baby has always screamed through the church services at some point during the sermon. But I'd be a liar if I didn't say I think James David loves church. Even in utero he would kick like crazy every time we were there. This morning he was just a cooing while we sang "The Old Rugged Cross". Then he just sat in my lap and listened as long as he could while Bro. Kyle preached before he just couldn't stay awake anymore. For some reason he just seems to love the house of God. Perhaps its because he's been surrounded by prayer his whole life. What ever it is, it has made him a truly exceptional child.

He has a way with people I'll never understand. At only 8 weeks old, he has every woman wrapped around his finger. He brings tears to their eyes and a smile to their face. He makes even the toughest old men melt. Men that never hold babies pick him up without hesitation. How can one child spread so much love?

When I look at him and he looks at me and smiles, I know he was just meant to be. It makes me wonder how anybody could possibly abort a baby just because they have SB. For some reason people have a preconceived notion that kids with SB will have poor quality of life. They think that they are doing their children a favor by sparing them their lives because they might be a little different. News flash people: we're all different! No they might not be able to walk. But there are some people who can't say "statistics" and they get picked on more than the kid with crutches. Just looking at James David now, I know he will change lives someday. He will be somebody. He may not be the president, or find the cure to cancer, or make millions. He may end up a simple farm boy with a humble little family, but he will be somebody. People will be glad to have known him, and lives wouldn't be the same with out him. No matter what he does, I will be proud of him, so long as he lives wholeheartedly.

"13 For you created my inmost being; you knit me together in my mother's womb.14 I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well.15 My frame was not hidden from you when I was made in the secret place. When I was woven together in the depths of the earth, 16 your eyes saw my unformed body. All the days ordained for me were written in your book before one of them came to be." -Psalms 193: 13-16

Laminin <-- Click here!

Wednesday, October 20, 2010

Whoever Said Ignorance Is Bliss?

One thing I absolutely cannot stand is an ignorant person. Unfortunately, James David's spina bifida has put me in the path of many ignorant people. People who make comments without understanding his diagnosis are always a joy. Plus the oodles of people who look at me like I'm a horrible mother and make snide comments about me letting him lay too long and him rubbing the hair off the back of his head. Hello! It's shaved! He's had surgery! There is a scar there. But my absolute favorite, are the people who are supposed to be helping him. Their job is to improve his quality of life and the are completely ignorant to him and everything about him.

Today was the biggest let down. I was super excited to make out his plan for Early Intervention so that we could start his therapy and begin working on our goals to get him to walk one day. However, when the lady arrived I quickly began to realize this was not going to be pleasant. She could not even remember James David's name. She was at my house a total of 30 minutes and asked his name at least 10 times (that is not an exaggeration). She failed to even look through his file before coming to the appt and did not even know his diagnosis. She went on and on telling me how Hydrocephalus is supposed to slow kids learning down, but shes seen so many children do just fine with it and didn't expect James David to even need the full 3 yrs of therapy they offer. I wish you could have seen her face when I told her that he had spina bifida as well. All she could say was "Oh... Well... Ok..." and then went on with the paperwork. The "plan" we were supposed to be drawing up especially for James David and his needs consisted of her taking a sheet of paper that contained all the milestones that normal 3 and 6 month olds are supposed to meet and copying it into the plan. Don't get me wrong, I want James David to be "normal" and meet all his milestones on time, but this was not at all what I had in mind for devising his plan. She left telling me that I was the only reason she had to come into work today (God forbid).

I Just do not understand how your job is to coordinate a plan to help families create a normal life for their child, and you not take your job seriously. Why do so many people lack passion nowadays?

Also, I wanted to be sure to thank all of you who took time out of your day today to pray for all the spina bifida kids, their families, doctors, obstetricians, and support groups out there. Unless you are put in this situation (something I would never wish upon anyone) you will never understand how much your thoughts and prayers mean to us. Thank you all so much! God Bless.

Monday, October 18, 2010

Momma's Boy: Good Thing or Bad Thing??

Don't get me wrong, I LOVE spending time with James David. Normally I can't get enough. Today, however, was a different story. Today I tried to bake a cake with my grandmother. James David wasn't keen to that idea. Well just in case you didn't know, holding an infant while beating icing in bowl over a pot of boiling water and making sure you don't burn it, the baby, or yourself is NOT possible. My grandmother was able to hold him for a bit while I finished up the icing (which turned out extremely runny...) After that there was no putting him down for me.

Hours passed. He clung to me. When he finally passed out I could lay him down for a few minutes, only for him to awake screaming when he realized I wasn't there. He's had days he's favored me before, but never to this degree of ridiculous. Here I am at the point of exhaustion. Actually not wanting to hold my son. I remember the days I cried and cried because I wanted to hold him so badly and couldn't. Now here I am, begging him to let someone else have a turn.

He's not hungry. He's not dirty. He won't sleep. Nothing works. As a last resort, I take his temp. 99.2 (a little high for his normal) Alas, an answer. He has fever. Now I feel like a complete jerk! My baby doesn't feel good, and the one thing he wants is his mommy to help make it better. What did I do? Everything but be there for him. Now questions start filing through my mind. Fever? What does that mean? His shunt scar has been kinda red today... Infection? His head is still soft. That means things are still draining, right? What about UTI? His urologist said he might get those...

Maybe he's just fussy. Maybe there is something wrong. Time will tell. As for now, he is sleeping in my arms. I am mommy. I am making it all better just by being here (some kinda awesome superpower I have acquired). How do I know this? He is rubbing my arm while he sleeps :)

Sunday, October 17, 2010

The Weather Channel

Have you ever noticed how rain has so many different variations? There are the vicious storms, the heavy downpours, the occasional shower, and the times it rains on the most beautiful days and it seems so out of place, but its still wonderful. I find that love it the same way. There are so many different types of love. Love can hurt, be overwhelming, and be confusingly peaceful.

Recently becoming a mother I have experienced all of these emotions. When James David was diagnosed with Spina Bifida, it was like a thunderstorm reeking havoc on my life. My baby boy was hurt. My love for him was so strong, the fact that anything was wrong with him absolutely devastated me. (A feeling many mothers have unfortunately experienced.) I sat depressed for weeks. (I was sure not to let anybody else see what I was feeling though). But then, gradually throughout my pregnancy the storm calmed. Then a few weeks before he was born I found myself stuck in a residual downpour. It seemed like everything would just continue to worsen. Distended bladder, enlarged kidney, and low amniotic fluid all threatened an early delivery, but he managed to hold out. James David was delivered by scheduled c-section at 39 weeks. He had an L4 lesion (as opposed to the S2 we were expecting). His sac ruptured, but luckily we avoided infection. We had a lot of problems with cathing variations. As soon as things looked like they were getting better we were back on Q6 again. (I realize that this is really good compared to some, but because of the constant variation it only lengthened our stay in the hospital). This even wouldn't have been a problem if we would have been able to stay in the Ronald McDonald House, but, like everything else, that didn't work out either. (there were some location issues with where we live. They were very rude.) Needless to say, the rain just kept coming down. Like all storms this one let up in due time.

Now we are home, and now, even though James David has Spina Bifida and always will, we are happy. He is doing great, in spite of everything he's been through. I have learned to see past it all and enjoy his amazing personality. I have a spunky tiny man who smiles all the time, is learning to sit up and coo, and has a temper beyond all belief. My love for him still astounds even me. We are still in the rain, but its a crazy beautiful rain and we are dancing in it. :)