Friday, October 29, 2010


Hope this makes you laugh. Its just a typical night in our house. We are loving how much the boys are "chatting" (a.k.a squealing). sorry its a bit long.

Stay tuned for more posts with lots of pics soon, have several in the works. The quick update is the boys are doing fabulous, busy as ever. Nicholas is still our crazy monkey child, he is every where, moving every thing he can push to walk but not quite ready to let go for long. He's recently learned how to "dance" which is so stinking cute. He not only moves his legs but does this funny thing with his head, almost looks like he's shaking his head no but has more of a bounce to it. hysterical.

Alex is doing great, he misses his "wheels" (a.k.a mobile stander) that we had to give back. We are not so patiently waiting for insurance to approve his own. We have a loaner stationary one that he's really too short to be in but we are trying to make it work. We bring him all these toys to try to bribe him to stay in it for a little bit but he's not having it. He just throws them all down and looks at us. We've been trying to teach both of the boys some sign language and he's got his form of "more" down by clapping his hands. But he uses this to tell us everything he wants. And he furiously claps his hands and furrows his brows when he wants down or is done with something. We thought his brother had the corner on temper tantrums but Alex is just starting to show us now that he can throw one down just as well as his brother. Its pretty funny (for now)!!

In other updates, Alex is officially no longer a pirate every morning. He was seen by the eye doctor who thinks his "lazy" eye is much improved and we can stop patching. YEAH!!!! Its always nice to be able to let go of something, so we'll take it!!!

He has his urology surgery a week from today and we are anxious ofcourse. Its another surgery. Even though it is a three hour surgery, he is expected to be released the same day as long as he recovers well from anesthesia so I'd be grateful for prayers for him. We will be happy to put one more of these behind him!

Monday, October 18, 2010

Spina Bifida Worldwide Day of Prayer

Our prayer from our amazing group on bifida kids

October is Spina Bifida Awareness Month, and we SB moms have on our minds, more than anything, the precious unborn babies who are so often terminated before they even have a chance to prove their lives have meaning and value to the world. To say that 50% of all Spina Bifida affected pregnancies are terminated is a conservative estimate. But we SB moms know there is no reason to terminate a baby because of SB. Our children are beautiful and intelligent gifts from God who have every opportunity to live full, productive, and totally normal yet extraordinary lives.

So we proclaim Wednesday, October 20 as the Spina Bifida Kids Worldwide Day of Prayer. We believe in the power of prayer, and we are excited at the prospect of many people praying at the same time for these unborn babies. We moms can make a difference individually and collectively, but that is nothing compared to the change that can come if we have God on our side.

We will begin at noon EST. Pray for as long as you feel led. Pray individually or with another person or group. On your knees, at your desk, while driving your car … the logistics do not matter.

Here are a few things you can pray about specifically:
1. There is one woman in particular who is on our hearts. God knows who she is. She is expecting a child with Spina Bifida, and she is afraid and considering termination. Today (Wednesday) is her appointment with a pediatric neurosurgeon to find out the severity of her baby’s case and to learn more about the diagnosis. Please pray that she will go to this appointment with an open heart and mind, that the doctor will give her a prognosis that is realistic and hopeful (we believe these adjectives are not mutually exclusive when talking about SB), and that most of all, God will give this woman a peace beyond understanding and a clear indication that she should keep her baby or give it up for adoption. There are many mothers willing to adopt this baby.

2. Obstetricians are usually the doctors who first diagnose Spina Bifida based on a prenatal ultrasound. Unfortunately, most know very little about SB except for what to look for on the ultrasound. Many of us were told by our OBs very scary and inaccurate information, such as “Your baby will likely not survive,” “She will be a vegetable,” “Terminating is the most loving thing you can do for this baby.” If this is the first time you’ve really even heard of SB, and a doctor you trust tells you this, you’re probably going to believe it. Please pray that these doctors will be educated about the SB prognosis so that they can give the diagnosis accurately and compassionately.

3. We SB moms will always remember the day we received the diagnosis as one of the most terrifying days of our lives. An initial grief response is denial, which often presents as “Please make this problem go away.” Termination is offered quickly. Please pray for these mothers and fathers, that they will first and foremost trust God to get them through this scary and uncertain time instead of letting fear guide their decisions. That God will draw near to them and make His presence known, as He did for so many of us. That these parents will be so filled with His peace about the future and love for their child that they will consider carrying the baby to term the easiest choice.

4. These precious babies are absolutely innocent and helpless. They are being thrown away because they are not “perfect.” Not one of us is perfect. Please pray for the lives of these babies to be spared. That each movement and kick will remind the mother that God knit that baby in her womb exactly as he or she should be. That their lives will bring glory to our Father.

5. Many of us SB parents cite the support of our family members and friends as the biggest comfort during the time right after receiving the diagnosis. But there are also families and friends who are unsupportive and even encouraging of termination. Please pray for these family members and friends, that God will use them to minister healing to the parents’ breaking hearts. That they will be wholly supportive, not hurtful, and they will lift up and help these parents as their raise their child.

Feel free to add other suggestions for what we should pray. And please pass this on to friends, family, church prayer groups, prayer warriors, pastors, and strangers.

“Again, I tell you that if two of you on earth agree about anything you ask for, it will be done for you by my Father in heaven. For where two or three come together in my name, there am I with them.” Matthew 18:19-20 (NIV)

Thursday, October 14, 2010

Pumpkin Patch

Our time at the pumpkin patch

Nicholas was not so sure about all these orange things

Alex was fine right from the start
but Nicholas "nope, am NOT going to smile around these things mama"

Lucikly, Alex didn't mind a bit

He was perfectly content hanging out

Nicholas eventually warmed up and began his smirking.

Here Mama, I can get this.

Don't do it Nicholas,
don't crack a smile

My three favorite guys!!!!
I'm such a lucky girl

Wednesday, October 6, 2010

"Redefining Spina Bifida"

So I have an amazing on line family. I talk about them often with  my "real" family ha,ha. We love watching all of our other little ones grow and accomplish so much!!!! Even though we've never met, this collection of incredible people affect me in a huge way, and have given me a wealth of support and guidance. Our common link is that we all love someone with spina bifida (mostly we are parents but we've had other family and friends visit us as well). We found each other on and its been a HUGE support for me (and hubby) as we navigate the road of Spina Bifida. One of the things that is often talked about on the board is that there is simply not enough awareness about Spina Bifida (I certainly did not know a thing about it before Alex). This is shocking really since Spina Bifida is THE most common disabling birth defect affecting over 1,000 children born every year! Check this out for more information!

So several of my friends are getting the word out in some fabulous ways (October is Spina Bifida month). What do you picture when you hear "Spina Bifida?" Well if you're already following this blog, you probably have a pretty good idea but here's more!

Go here and you can see a blog of our sweet amazing babes, Cassie is featuring a child with Spina Bifida every day this month! Alex was already featured here.

And just as exciting one of our friends Kari came up with an idea of creating a t-shirt to bring more awareness. Together with Leigh and Andy (Grey's parents) they came up with this. Its FABULOUS. I'm going to go place my order! You can too if you are interested! Go here to order yours!!!


Friday, October 1, 2010

New Wheels

We have new wheels....and not the wheels that you are thinking of (although we have our loaner back too!!)

No I"m talking about THESE wheels.

Okay so maybe their not so new. We actually got these wheels from Grandma and Grandpa forever ago at the boys first birthday. They just weren't quite ready to play in them yet. But watch out. They are now!!!

Nicholas is not so sure about the jump start with the button on the wheel yet. He figured it out but surprises himself every time. but he's perfectly content having mommy or daddy steer him around. Oh and he also likes trying to push it himself. Pushing the whole car, Alex in it and everything.

He's actually trying to do that here with Alex in the driver seat. Nicholas in fact will try to push any AND every thing thats not nailed down to the floor in his persistence to walk. Its pretty darn cute! Well except when things begin to fall over. Which makes him cry. But no worries (for him anyway), a minute later he's back at it again.

I found this little grocery cart on craigs list for him to push around. He loves it. Until it gets "stuck" up against the wall or piece of furniture. Then he tries with all of his brute force to "fix" it.

Luckily with all of his frustration at his emerging skills. we still get these to balance it all:

I can't even explain this new face of his, it cracks us up every time. He makes this funny little sniffing noise when he does it and clearly he knows we get a kick out of it so he keeps doing it. sooooo cute!!!

Lately I look at some of our pictures and think hmmmm.....they are starting to look just a bit, dare I say it? Its a little hard to say it but sometimes I'll look at them or one of their pictures lately and think they are starting to look more like little boys then my babies. These are a couple examples. This is what every one talks about it isn't it? How fast they grow? right before your eyes? It seems to happen over night. ugh, my heart. A part of me wants to keep them little forever.

But ofcourse I KNOW that I will love even more the little boys they are growing into!!!!!

And because I use this blog both to update our out of town friends and family (and local friends and family that we don't get to see nearly as much as we'd love). Here's a quick update about the boys.

We were surprised to get Nicholas's allergy tests back to say that he has a class 5 milk allergy. I didn't really know what the number meant but apparently the scale only goes up to a 6 so not the greatest news. We have to strictly avoid any milk or milk proteins in foods. Its not the end of the world certainly, we can definitely and will deal. And really, its sooo much easier now to find dairy substitues then ever before. I was just stunned to start reading ingredients to find how many things really do have some sort of milk in them. I mean there's the obvious (milk, yogurt, anything with cheese) and then there are the surprising ones: cereals, cereal bars, soups, lunch meat.....I know a lot of children have milk allergies so some of you reading this probably have more of an education then I do so far but for those who don't: take a look in your pantry or freezer and look for the dairy ingredients. Milk, non fat milk, whey, casein. Their in more things then I would have ever thought. Luckily his most severe reaction has only been hives. The allergist cautioned us that there's no predicting what his next reaction would be, could be mild or possibly not. We have an epi pen and are encouraged to show our closest family and friends how to use it for the just in case. He's also allergic to eggs and nuts but to a much lesser extent. He will be re-tested in January and we are hoping that like many little ones, that he will outgrow these in time.

Alex missed these tests due to his surgery so he will have them next week. He also had hives twice with dairy before so we anticipate similar testing results. Again, not a huge deal but one that goes on our radar screen. Luckily with the internet we are already finding lots of yummy dairy free recipes to try and the boys don't know they are missing anything.

The other news is a bit more concerning. Many of my spina bifida mommies already know this because I've been leaning on them for support and guidance these last weeks. I will try not to be at all graphic. I have thought on/off that Alex was having trouble with the dirty diaper situation, like he was going a little bit on/off for weeks but not going enough. Definitely a change for him but since he was still going a bit, I wasn't sure whether to be concerned. I mentioned it to several doctors when he was in the hospital several weeks ago but they assured me it was from the anesthesia. I explained I meant this started to change before he even had the surgery but they felt his tummy and were not concerned. Then a week and a half ago we saw one of the on call physicians during the weekend about Alex's breathing and I discussed my concern again. Again he felt his tummy and said he felt fine, not distended or "hard" or typical things you feel when a child is backed up. So I let it go for a few more days. Then late last week it was just nagging at me, you know how it is when you want to deny it, but you are pretty darn sure something is just not right. I called the pediatrician and asked to speak with her about it. Luckily I got his pediatirican, someone who knows him AND me and she trusted my "gut:-pun intended. We started increasing his miralax in hopes of pushing things through. He's been on a small amount every day since he was a babe to try and avoid just this situation. Babies with spina bifida are prone to constipation due to nerves and being able to be less active in general. A couple more days and we increased the dose again. Then we went in for an appt this week and she ordered an xray to see what was really going on.

Here's the lesson mommies, one that is told time and time again ofcourse. Trust your "gut", instincts, intuition, whatever you want to call it. He is impacted. Its all the way towards the top of the large intestine so nothing that you could really feel. Not anywhere near low enough where the doctor feels a suppository would help. Thankfully its not obstructed, which is why we are getting some stuff thats going"around" it but there's still quite a bit in there she said by the look of the xray. Luckily he is acting fine, not uncomfortable in any way. We are pushing more and more miralax but so far, its not doing the trick. We have to call first thing tomorrow to give a report and then find out whats next. I'm worried about the whats next part ofcourse. I'm afraid we'll have to subject him to invasive things or uncomfortable things and I just feel like he's had enough for awhile but obviously something will have to be done to get things on the right path again. A strange request I'm sure but keep him in your prayers for lots of dirty diapers soon :)

and because I simply can't end a post on that note, here's a couple more:

Hi, how are you?
What? I have a little something on my chin??

Nicholas saying hi
and wanna play?

No, REALLY, come here friends
we won't get you messy....much!