Why I started this blog

When I started my blog almost 18 months ago, the main reason was to keep my friends and family updated on our little Matthew man. As it evolved; I hoped that someday maybe someone would happen upon my blog that was desperately looking for hope and answers after a diagnosis of hydrocephalus. I know one of the first things that I did after our ultrasound that day was to torture Google. I googled and googled; for hours, clicking and chasing bunny trails on the internet. I found some interesting blog sites and message boards. I have been blessed to live in a day and age when this information is so readily available. I've always wondered if anyone out there has found my blog in a similar way. I've often wanted to 'write them' and encourage them to keep their baby and not give up hope. All too often these days, couples are counseled and often strongly encouraged not to give babies like Matthew a chance. They are given the choice to play God, (which I don't believe is a choice, by the way..it's not my choice to decide the days of another innocent humans life).
Recently, on a message board I belong to, in which the members are those whose children have been affected by hydrocephalus, I gave my opinion to another expectant mom on this very subject. And after I re-read it; I knew that this is what I wanted every mom that finds my blog to know. So I'm editing it a bit, and I'm going to post a link to this post on the sidebar of my blog; so just in case someone finds my blog and is searching for hope and the answer for what they will choose; maybe I will be of some help.

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Hello!
If you have found my blog because you are searching for answers after you've received a prenatal diagnosis of hydrocephalus, I've written this with just you in mind.
First of all, let me give you a little back round. My son Matthew is 15 months old. We received his diagnosis at 20 weeks gestation. Unlike some of the 'doom and gloom' other parents have received after the 'hydrocephalus diagnosis", our perinatologist was very optimistic. He said that while there really is no way to know his future, MOST of these kiddos with this diagnosis do remarkably well, and are caught up developmentally by school age. He also said that there would probably be some sort of learning delay or disability; but plenty of other children who are born under typical circumstances can have the same issues. We clung to those words of hope, and my pregnancy was pretty uneventful, and I was very hopeful that we would be in the "MOST" category. While I worried a bit, I don't feel like I was fear-filled. I researched, I educated myself, I met lots of great people on the internet going through similar circumstances.
Matthew was born in May of 08, shunted the day after he was born and we took him home after 10 days. He did awesome. He was completely breastfed and everyone marveled that he seemed so 'typical' (quote un quote normal) At 2 months, he started having seizures, at 4 months, infantile spasms. By nine months, all the medications we were forcing in his mouth 3 times a day gave him a huge oral aversion. He ended up with a g-tube for his meds. At 12 months of age, I could not calorically keep up with his needs, and he quit gaining weight. Since he would only breastfeed, and not eat by mouth (due to the oral aversion of anything but breastfeeding) we started giving him formula in his g-tube. By 14 months of age, he was getting all his calories by tube and quit breastfeeding.
Matthew is developmentally delayed. He doesn't sit up, he doesn't roll over, he is visually impaired.
And our perinatologist is right, most kids with hydrocephalus do end up doing remarkably well, but I do believe Matthew has ended up having more struggles than the average child diagnosed with hydrocephalus.

Now that doesn't quite sound like the happy ending we were hoping for, does it? I beg to differ. Sure, it's not what we'd hoped and prayed for; but I believe we are far more blessed and than if we'd received our pre-pregnancy 'dream'. We cherish every day. We have learned to cherish the small things; the milestones other parents may not make as big of a deal about because it's expected. He notice EVERY time Matthew smiles, we get excited when he reaches for our faces. We coo back at him every time he makes a noise-no matter where we are; he is never 'shushed' for the sweet noises that come from his lips. We cheer when he lifts his head off the ground. When he's sick in the hospital, we cheer when he bats the oxygen tubing off his nose, because we know it annoys him and it is a sign he's getting better.

Here are some other things I would like you to know:

#1 Ultrasounds are not a definitive diagnosis for a child's life; especially when you are talking about the brain. There is a large variance. The brain has an amazing way of rerouting and rebuilding itself. You can get a bad prognosis and they can be WRONG! and vice versa. NO ONE KNOWS; they can speculate, but no one knows!!! And even if they only have a 'ribbon of brain' that 'ribbon' can make up for what is not there. Every doctor will tell that there is alot that is not understood about the brain.
#2 Just because Matthew is visually impaired, developmentally delayed, gets his nutrition through his g-button and not his mouth does not make him unable to participate in life. He is most loved and happy baby I know. He is a pure joy to our family and he enjoys life just like the rest of kids his age. He is held, he plays on the floor, he cries, he gets his diapers changed. Sure he has struggles; but so do all of us. I have given ALL of my children a chance to have a happy life; not ONE of us is guaranteed a tomorrow, much less an easy life. Just because all my other children were born 'typical' doesn't guarantee them to 'be like other kids'. There are lots of variables in life and childhood. NO GUARANTEES.
#3 I have personally been in contact with 2 moms who were given grave diagnosis for their children; but whose kids are 'typical' and the doctor's were wrong. Not that that matters to me though. Life is life. No matter how many days you have; it's still life. Whether you live 1 day or 100 years or anywhere in between, it's still LIFE.


Would I change the ways things are? Well, that's a loaded question. I would love to not have any of my children have struggles in life, whether it be medical, physical, psychological, educational, or make poor decisions and anything otherwise. All moms want that for there children. I would take away their struggles if I could. BUT I CAN"T. It doesn't make their life any less worth living.
Do I love Matthew less or think he has a 'grim' life because of his struggles? ABSOLUTELY not!! He in some ways has a better life than others. He is the closest thing to an angel that I'll ever get to meet on this earth. He doesn't know jealousy, hate, and he's doesn't pass judgement on people. He loves unconditionally. And I am BLESSED and privileged to be his mommy! I AM THE LUCKY ONE!!! Not all moms get this chance!!

So my advice to you...you were given this child for a reason. Love him for all the days of his life; whether that life be hours on this earth or decades. Love him whether or not he has struggles. He will bring you joy beyond measure. Will you cry?, yes; will you at times be frustrated?, yes; will you wonder how you will do it?, maybe; will you regret giving your baby a chance??? I think the answer will be NO!

Back Blogging

I've been lazy lately with my blogging and have some things that happened in August that I didn't blog. I figure better late than never.

Towards the of August, we went back to my hometown to the county fair. We had a blast; it is the best county fair ever. The prices are right, the size of the fair is just right, and it's where I went every year growing up. We spent the whole day there and the kids had a blast!

Megan waiting in line for a ride

Megan and Mason rode the swings, but thought it was fun to hold hands while it was moving

All the kids on the ferris wheel.

Micah won third place at the tractor pull. It was raining by then. Micah spent most of his time riding all the big rides and bumper cars.

Matthew enjoying the best homemade icrecream money can buy! {or is that mommy's icecream??? I guess we'll never know.}

The most fun I've had in a long time!

Remember my post about a couple of weeks ago when I said I was getting to go meet my friend, Kristen, her husband Mike and there daughter, Cayman? Sunday, the day finally came! I jumped on a plane and headed to Detroit. Our plane didn't land until 11 pm; but Kristen, Mike and Cayman were there waiting for me! It was going to be a whirlwind of a couple of days, but they were totally up for the challenge. Sunday night Kristen and I stayed up until 4 a.m. talking. Monday we did let ourselves sleep in a bit; we were up and at 'em with the kids by 10 am. Cayman and Matthew became fast friends: For the longest time, Kristen and I have jokingly decided that Matthew and Cayman should be married. It looks like it will work....

I also got the opportunity to meet Kristen's mom and Kristen's sister Madison right before lunch. Kristen's mom brought over whoopie pies (yum, by the way) and then Mike came home for a quick lunch (which he'd made himself the day before). After lunch and some more playing, Cayman and Matthew went down for a nap and Kristen, offered to give me a massage. How could I refuse?? Kristen is a licensed massage therapist; and I received the best massage I've ever had. (truly!) Mike's mom came over for a bit and we had a nice visit. Before we knew it, Mike was home for the day and it was time to pack up and head to Adrian, MI. One of the reasons for my trip was to visit Cayman's naturopathic doctor for Matthew. As most of you know, who know me or read my blog, I tend to gravitate toward the natural spectrum of things. Kristen has been talking to me for a long time about naturopathic care and how much Cayman has benefited from it. I have looked around this area, and visited with a few naturopathic doctors, but have not found one that I am comfortable with. I've visited with Greg (Cayman's naturopath) on the phone and have felt at peace with his care. He is intelligent and the things he talked about made scientific sense to me . I wanted to give this a shot for Matthew. I was very impressed with his knowledge and things that we can do for Matthew. I will be excited to see if we will be able to see some measurable improvement for Matthew.

After our appointment, we went and had the most AMAZING sushi I've ever had. I even learned to eat with chopsticks! Then we were off to Detroit again. We had decided with my early flight out, it would be best to get a hotel and crash there so we could spend the maximum amount of time visiting (and it was supposed to also allow us to get a good nights sleep...but, that didn't happen...we slept for just over an hour!)

I had an absolutely amazing time. We were treated like royalty; I mean, really; great food, hospitality, a MASSAGE!, and a free chauffeur...it was absolutely amazing. And even if none of the previously mentioned had happened, I still would have had a awesome time. Kristen and Mike were the absolute complete picture of the Christian family. I am blessed to know them and be able to call them my friends!(Thanks again Mike and Kristen...I love you guys!)

Kristen was the photographer for the trip (I'm terrible at picture taking) and if you want to see the photographic story of our days; click here

Sniff....

As of August 19; I now have 3 kiddos that are school age...unbelieveable

(oh, and ignore the chipping pain on our rail..we've been busy..and Ihate to paint!)

80th birthday

Well I finally (after much work) figured out how to get my pictures to download again from my computer. So now I can blog again :) Here are pictures from my grandma's 80th birthday party 2 weeks ago. We had such a great time!

The Birthday Girl-my Grandma-at a young 80 years old!

My dad and Megan snugglin' during the party

Matthew enjoying all of the attention he recieved

My grandmas party was held at my uncle Craig and Aunt Katie's house and this it the view from their backyard...isn't that cool, they love baseball and my uncle actually is an umpire at this ball diamond. The name of the street the live on (too cool).....' PopFly Lane'

My Grandma and Grandpa and their kids:

L-R Uncle Dave, Aunt Denise, Grandpa, Uncle Craig, Grandma and my mom (Sue)

I am SO excited!!

Okay, so I haven't been posting for awhile, I have pictures from 2 weeks on my camera; but I can't get them off. It will have to wait till I have some time to diagnose the problem. Until then; I have some FUN news! I found a kicking good deal on some plane tickets and Matthew and I are going to see Kristen, Cayman's mommy, and blogging friend of mine in two weeks!!!Kristen and her husband Mike have VERY graciously offered there home to me while I'm there. It is going to be a very short trip, and I probably won't sleep at all while we're there; but seriously I am STOKED. I can't wait!

So sorry this took so long

I know I've been gone for awhile. I apologize. I left you all hanging with the last news that I was worried about Matthew. Here is the story for those of you that don't have facebook :)

I talked with the doctors Monday morning about what we'd been seeing with Matthew. Everyone involved agreed that he needed at least an EEG. Omaha, however, could not get him in for EEG until Thursday. His doctors in Minnesota and I both felt he couldn't wait that long. If the 'episodes' we were seeing were indeed seizures, then Matthew was seizing a good portion of the day. None of the medications we had given him seemed to help these 'episodes'. So by 5:30 we had approval from Minnesota to be admitted there the next morning. Monday was a stressful day; filled with phone calls and tears. For awhile we thought maybe we'd get to go to Omaha, that they'd squeeze us in; but with no luck. Then the possibility of flying also came up; but we decided driving was better. Then we found out we had to get approval from Matthew's insurance to go out-of-state; and I didn't get this news till 2 o'clock. I was glad when Matthew and I were finally packed in the car for Minnesota.
We left about 9:30, thinking Matthew would sleep most of the way. WRONG. Many stops and lots of screaming ensued for the next 6 hours. I finally gave up getting there at 3:30 am and just stopped and got a motel. Matthew never did sleep that night; but I crashed for about 3 hours. We had to be on the road again by 7:45 to make the final trek.
Tuesday was filled with more xrays, tests and EEG's. In Minnesota, they have the ability to do 24 hour EEG. After some time hooked up to EEG, it was determined that he was not having seizures, but was definitely in pain, and was also having a neurological response to this pain. So we had to figure out where that was coming from. They did do hip xrays along with other bone xrays; and all looked good. We decided it would be best to give him some relief from all of the chaos going on in his body; and gave him a strong dose of Valium. This, however, did not make him sleep, but did calm his raw nerves and helped him relax.
After 48 hours of EEG and numerous tests, nothing could be found, except one thing: on one xray, it showed that Matthew had a belly FULL of air. Dr. D, Matthew's epileptologist, said that we could possibly just be dealing with some very painful gas. Seriously??? Gas????? He said that there was also a possibility that he was having some teething pain, which caused him to cry, and swallow air, which gave him more pain, when caused more crying....you get the drift. A vicious cycle. So we started a regime of venting his g-button (which lets out trapped air), ibuprofen and orajel (even though his gums look no different than they did 5 months ago....I'm not sure I believe the teething thing). and guess what, my sweet baby came back! As for all the jitteryness and rhythmic twitching that everyone, pediatrician and neurology nurses included, thought was seizure activity; well, it's not. What it is, we don't know. But, if it's not seizures, then we won't give him any additional medication.
I was a bit embarrassed to think we traveled 6 hours for gas pain, but Dr. D. reminded me that even the doctors back home thought he should come, so not to blame myself. It's sometimes hard to figure these things out when Matthew can be such a complicated little guy.
We were dismissed Friday, but instead of coming home, we went to my parents house and Steve and the kids met us there. My grandma had her 80th birthday party (that is my next post) and we got out of the hospital just in time. Then we drove home late Saturday night. Oh, does it ever feel good to be home! I can't wait to crawl into my own bed; which by the way, I should do (especially if you see what time I am typing this)