full heart

Well still no official date of Ians surgery. I have called and left lots of messages but no ones calling me back. As soon as I find out I will let everyone know. I have decided to cancel the spaghetti dinner the costs and expenses just were not going to work out to our advantage.BUT  we are going to set up a account to give to the foundation in Ians name and as soon as I have a web address for that I will post it. We do want to raise awareness and donate for studies. Im looking into running and other ways to raise awareness. I want to thank everyone for the kind words and random messages I have been getting. Its really nice to hear. I have more peace this week about the actual surgery. I did the one thing that I said I wouldnt and googled "tethered cord surgery" and instead of a bunch of horror stories it made me feel better. I dont want to get my hopes up and expect Ian to be running around the house by Christmas, but at least the actual surgery itself isnt petrifying me like it was. If nothing comes out of it at least we can say we tried and we will never be wondering "what if".

    Sometimes its really easy to feel sorry for myself and for Ian. Everyday I get a reminder of how good we really have it, and this is all pretty minor compared to others. So I thank God for two beautiful perfect children (in my eyes) they really are the biggest blessings...ever


******************************UPDATE*****************************
Ians surgery is scheduled for Sept 13th

the dinner

 Well since starting this whole fund raiser. I have been getting the question "how much is Ians surgery going to cost you?". I want to make it perfectly clear that Ians surgery is 100% covered! Thank the good Lord! The reason for the event is two reasons. The biggie is that I basically have to decide to have a job OR be there with my son during this journey. I am a new grad nurse and no job is going to let me take one week off of work much less multiple weeks! Ians not going to be able to just go right back to daycare after being discharged from the hospital. So someone is going to have to stay with him and as any mother would understand I feel like it should be me. Soooo Ians surgery puts us in a not so great financial situation. ALSO Ians condition gets very little attention and what I would really love to start doing is raising money for the CSF foundation heres their site http://www.csfinfo.org/node/176   We are going to give a portion of contributions to them. I am also looking at 5ks and stuff to raise money for this foundation. Im no runner....but for my baby I could be a marathoner! Im also thinking about getting recipes from people and putting together a cookbook for the foundation.Anyways I just wanted to put that out there and be perfectly crystal clear. Thanks so much to everyone who is supporting us. The dinner coming up is going to be really great!

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big news!

     So today was Ians neurosurgery appointment. I had a feeling they would finally start talking about untethering that cord today. Well thats exactly what happened. In about 3 weeks Ian will have major surgery to untether his cord. The Dr explain the whole process but the only thing I could really hear is "He will be in ICU for 5 days and highly sedated post op" (FIVE DAYS SEDATED!?!). This doesnt suprise me though when I think about it. They cant let him just throw himself around after cutting his spine open. There is a high risk of infection and a risk of spinal fluid leaking and causing major complications so thats why he will be sedated and watched so closely. My hope is this will help him be able to feel his legs better and loosen up the lower half of his body so he can walk. This surgery is no guarantee. It may be life changing and Ian could be walking before we know it making this surgery the best thing ever, OR it may do nothing. Theres no real way of knowing. So we are preparing ourselves in any way we can now. My best friend (Amanda) is throwing a fundraiser for Ian.  It will be on Sept 8th from 11 to 2 at the Lakewood House in North Little Rock. Its 8$/plate and we will sell raffle tickets. If anyone wants more info feel free to email me chastity_16_99@yahoo.com.
    Its strange I heard pretty much exactly what I wanted to hear and I thought I was very prepared. I was so wrong. I am very shaken up. Im sure in time that will settle down. Ian started his new class yesterday. He loves it and I love it!! The teachers are so sweet and I am so glad he is in there. Brooklynn started school this week at Cato Elementary. She really enjoys it! Welp Im exhausted, but now everyone is caught up for the moment. Thanks for reading, and please keep my Ian boy in your prayers!

my little guy

Ive decided to make entries a little more often at least until I feel like Im caught up. Now Im not promising anything. I may change my mind tomorrow and decide I will just do it whenever...I am a woman after all.
A couple facts about Ian He is a little guy. Ian weights 23 lbs and is about the size of a 18 month old. In fact if you didn't know Ian at all in passing you would just think he is a average 1 year old. I think it has to do with low muscle tone but really I have no idea. But since I am carrying him constantly Im ok with it.

Next week he is going to a new class with kids his age. Right now he is in a class with 1 year olds. The teachers seem to think this will do him good, and motivate him to do more. Im hoping they are right. Im a little worried he is going to get trampled on. I peeked into the new class room this morning and all the kids seemed huge compared to him. Im also kinda sad that he has to readjust to a new class room again. That cant be easy for him.

On a super duper happy note, Ian said a couple words last week. While putting his shoes on he hit me and then told himself "no no" and whenever I walk into a room he says "heeeeey", he has said "uh oh" and "whoa whoa" he does this alot now. He has 2 appointments this month. One with urology tomorrow. Im assuming this is just a follow up on the urodynamics test he did a couple weeks ago. I got the results of that in the mail the other day and everything came back normal. Praise God! This means no catheters!! He has a appointment with Neurosurgery on the 21st. I know this may sound crazy but Im hoping they talk about surgery. You see in my mind if he is going to have to have the surgery regardless, I rather him have it now while he is young enough that he wont remember it or really know whats happening. I have also read that irreversible damage can be done to nerves if surgery isnt done in a timely manner. Of course Im clinging to some hope that maybe if we fix the tethered cord he will be able to walk. Probably the hardest thing about this journey is its completely out of my hands. I am powerless. All I can really do is pray...and ask you to pray

Starting over :(

Yes I had to start completely over on this blogging journey. Apparently blogspot made some changes the 6 months I had disappeared off this site and I lost everything :(((( . No good. The reason why I wanted to do a new entry is because I realized its been about a year since I realized something was not quite "right" with Ian and we began this very long heart wrenching journey with him. In this year Ian has had 2 MRIs, tubes in his ears, 3 urodynamic test, a EKG, genetic testing....and so on and so forth. We dont know much but what we do know is Ian has Chiari 1 malformation http://www.mayoclinic.com/health/chiari-malformation/DS00839 < if your curious, and tethered cord...a sort of kind of type of spina bifida. He will have to have surgery on this eventually. Im hoping sooner than later.So if you dont know Ian let me tell you a little bit about him  I am of course his mother so its definitely sugar coated with sprinkles on top). Ian is 2 now and his personality is just awesome. He is the most affectionate, sweetest, funny little man I know. Every night he gives me sugars by taking both of his hands and pulling my face to him and planting them on me....its the best thing ever. He does have a temper, but I believe its because he cant communicate the way he would like too. Ian does not walk or even crawl but he does scoot. I am sooo grateful that he figure out a way to get around. He goes to Pathfinders. I hate that he has to go, not that its not an awesome place its just I would love to be able to have more time with him at home, but its necessary...so he goes. The best part of my day is picking him up! Ian hasnt been given a diagnoses to why he doesnt talk. Sometimes I wonder if he has autism. He loves to spin the wheels on cars, he LOOOOVES watching fans and he does the flapping of the arms when he gets excited. I dont know whats going on in that little body of his but I know whatever the outcome is we are determined to give him the best life possible. If he grows up to be fully functioning...great. If he has to live with us forever thats 100% fine by me. Yes this blog is mainly going to be focused on him...mainly because its a good outlet for me and also to keep family and friends updated. On a small side note a few things that happened in the last 6 months: I graduated nursing school, Scott began the process of trying to get a PD job on Kauai (still in process) Brooklynn turned 4 and is about to start Pre K. The End..whew!