MRI #3

      So Ians third MRI was yesterday. Scott could not go because of work so I had my best friend come with me (Amanda). It worked out well. She kept me in high spirits and distracted me when usually I start letting my mind wonder. We checked in at 8:30 and I think by 9:00 we were down stairs in the MRI "suite" Ian had the same nurse he had last time. I wish I could remember his name but he was really great at his job and it was nice to see a familiar face. We were down there maybe 30 minutes and they were ready for him. Of course he screamed and fought and it went exactly like it has in the past. When the MRI was over they called us back before he had woke up. I was so thankful for that so I could be right there when he woke up. I think we were walking out of Childrens by 11:30! It felt like we were in then out.

    Today was Ians appointment with his neurologist Dr Rogers. He had the results of the MRI. He said that everything looked consistent and pretty much the same as the last MRI. There is no talk of surgery on his tethered cord right now since he seems to be really progressing in therapy. There is also no talk of surgery for his Chiari 1. That will probably happen but much further down the road. My favorite part is when he told me Ian wont need another MRI in June! Woohoo. We might actually go a whole year without a MRI! Thats great news.

      Next appointment is Dennis Developmental Center. . Everyone have a Merry Christmas and I will of course keep everyone posted!

MRI and hearing screen

     Well its been an exciting time around here lately. I saw with my own two eyes Ian walk at school. Not just a few steps but like 6 feet! He barely picks up his feet and he looks very stiff but I think its because he is sooo scared of falling. In time he will get over that fear and I will get to put that walker up! He doesn't walk at home on his own. He much rather use his walker still, and I let him because its stressful for him and I know they push him pretty hard in therapy everyday. I want home to be his safe haven. He has been saying hi and bye a lot more too! These may seem like little things to outsiders, but to me its a huge victory!

      Ians third MRI is this coming Monday. I am dreading it in a MAJOR way. He has to be asleep for the MRI so they gas him, and typically I hold him until he is knocked out. Its a terrible feeling to feel his body go from wailing and screaming and crying to limp and and completely knocked out in a matter of seconds....its creepy and very very sad. I usually hand him over quickly and walk out as fast as I can without looking back because its so emotional. When he wakes up he is usually HIGHLY upset but Im feeling better at that point, and then its up hill from there. So please pray this Monday that Ians MRI shows no changes or even improvements with his Chiari 1 would be great!!!! Also pray for my nerves as I will be alone.

   Ian also is going to have his hearing tested in the near future. He hates anything touching his head or ears and just will not cooperate during a hearing screening. So he is going to be sedated and we are going to try it that way. They will also go ahead and put new tubes in his ears while he is under. Hopefully they give him Versed like they did last time :o)

      Well thats everything in a nutshell for now. I will most definitely post the MRI results on here and facebook as soon as I find out. I have family all over the place and this is just the easiest way to keep everyone updated. Thank you in advance for the prayers for Monday.

   

     

3 BIG steps!!

I said I wasnt going to post again until closer to Ians MRI in Dec.....unless something remarkable happened. Well guess what!? It happened! Yesterday I went to go pick Ian up from Pathfinders, and when his teacher saw me she gave me the biggest smile and said "I have great news". My heart started pounding, Im thinking oh did he pull himself up again or say something?She got really giddy and said "he took three steps". I was in disbelief. I was unsure what she meant. "What do you mean...like all by himself? How??" She then told me during physical therapy they had him standing up and slowly got him to let go of the therapist so he was standing on his own. They said he was really upset and anxious (because he isnt used to this) but then he calmed down a little and took THREE STEPS to the therapist. Just like that! We all knew he could do it, its just mind over matter now! Now that doesnt mean he is a walker now but maybe by Christmas! It means he CAN do it we just have to help him build up the confidence to do it. The teacher said "I wish you could have seen it". I told her I would have been a blubbering idiot and I dont mind TOO much that I missed his first steps. I pretty much knew his first steps would be at school. So I had emotionally prepared myself for that. So now those reoccurring dreams I have been having of him walking are finally coming to life. Well I have to go write in Ians baby book now!!!

relatively normal

So its been a while since my last post. Thats because everything has been relatively normal! Ian hasn't had a Drs appointment for at least a month. It is so nice to get a break from that place. The biggest thing that has happened around here is Ian finally got his walker. He got it November 1st. He loves his walker, and when he gets sick of walking around he will just sit on the floor and spin the wheels lol. He does really well with it! He is pulling himself up more and more from higher and higher places. Any progress I see I get really excited about. I think about it like this: If today Ian stopped progressing he would still be able to walk with a walker and communicate with some signs. There was a time in my life I wasn't sure if I was even going to get that. So anything I get now just feels like bonus! Dont get me wrong I have expectations from him and they are not low at all they are just different. 

Something new I have to get used to now that Ian has a walker is THE STARES. I have only taken Ian out in public with his walker a few times. I usually just let him roam the house in it and that kind of thing. Well this weekend we went to Chuck E Cheese for a birthday. He was having such an amazing time just running around checking everything out. With that walker it definitley makes him stand out. He doesnt look like a normal 1 year old who cant walk. When he is tanding strait up and running around with the walker he looks older and of course its obvious he has some disability. Funny thing is I did not mind the little kids asking questions or the adults saying things like "he gets around good with that" or whatever, but just standing there staring at my son with a sad look on their face REALLY bothered me. Its not sad, and if you have a question ASK!I know I am going to come across this more and more and I bet I get used to it. I just dont want anyone to look at my son and have pity. He is not pitiful. He is amazing! So thats all for now. I will update in a couple weeks when his MRI gets closer. (Unless something really remarkable happens :0)) Please keep him in your prayers. I believe he WILL be a WALKING and TALKING miracle

                                                               Ian playing skee ball

just some details

    Well we had our semi annual conference at Pathfinders this week. What usually goes down in these meetings is this : We meet with all of Ians therapist, teachers, director, even the nurse. They go through all of Ians goals they have set and tell us which ones he has met and which ones still need work. They tell us at what age equivalency he is at in occupational, speech, and at a physical level. I never leave in a good mood from these. Its hard to look at a piece of paper that tells you "Ian is at a 11 month old level" or "Ian is 48 percent behind". I hate it I hate it I hate it. I would be more than glad to never go to one of those things again! It just makes me super sad! I usually get a little choked up and get a big knot in my throat at some point and I quit listening to what everyone is saying and I just focus on not getting emotional and getting myself together. Having a child is hard...having a child who is "different" "special" whatever you want to call it is REALLY HARD! I dont even have a way to label it. I cant quickly explain to a stranger my 2 year old look and acts like a 1 year old and I dont really know why. When strangers say "oh he is so cute. How old is he?" and I say "He is 2" then I get a look of confusion from the stranger and I have to go through this whole explanation of "He is small for his age and developmentally delayed" and basically tell his whole life story.... then they look at me like Im pitiful. UGH! Sometimes I think he is autistic, sometimes I thinks he has a sensory disorder, but most of the time I REALLY DONT KNOW. What I would really love at this point in our journey is to have a name for whats going on with him. If your confused reading this and thinking "I thought Ian had Chiari 1 and tethered cord and thats whats wrong". He does! BUT his doctors dont think that this diagnosis is whats causing ALL the delays....it MIGHT be causing the walking delay but the talking and the other motor skills they cannot explain. Ian had a genetic test done last year. I was so sure he had some sort of genetic disorder. To my surprise it came back normal....well mostly. They ran it 25 times. 24 of those times it was normal one of those times the DNA was switched up a little. They considered it a fluke and dismissed that one time. 

    

     Ian had a hearing screen done this week and he failed it....again. So we will be going back to the ENT this month and see whats up with that ( that would explain the speech delay)  He had tubes put in last spring and I could really tell he could hear better after that. He doesnt SEEM to be hearing impaired but who knows. When I worked at the hospital and did hearing screens on the newborns they failed all the time and 99.9% of the time it meant nothing. Ok Im exhausted. Thanks for reading :)

progress!

       Just wanted to give a quick update: Ian has a walker ordered. It is specially made for him and we should be getting it in a few weeks. He has his next MRI scheduled for mid December and we will go from there on what to do or not do depending on his progress and the status of his MRI. He is crawling more and more but he still prefers to scoot. Something else new ... he is trying to pull himself up! This makes me really excited because I know once he is successful with that walking is really just around the corner. So I consider him trying to pull up major progress. Just a few short weeks ago he showed no interest in pulling up. He has been successful pulling himself up only a couple of times, but I have a feeling in little time he will have it down. 

        Today he was pointing outside and whining. I knew what he wanted (to play outside) so I told him "Ian just say OUT and I will take you out" and sure enough he said "OUT" pretty clear! He has a little bit of trouble with consonants so it sounded like OW but it confirmed what I already knew. Ian understands everything going on around him he just doesn't really want to say much. When I promised him we would go outside he was quick to say something. So I will be doing that more!! If I have to bribe him to speak I have no problem with it.

        I just have to say I am so thankful Ian can eat on his own and he doesnt need oxygen or the fact that he is just a pretty healthy guy! I dont know who reads this, but I want parents of "different children" to know...its not the end of the world and once you mourn that perfect child life goes on and the new normal sets in and its just life. Its going to be ok. really.

My baby loooves to eat! :)

Change of Plans!

Well we have had a bit of change in our plans. This morning we had a appointment with Ians neurosurgeon. Dr Albert told us that he presented Ians case to a board of  Drs and some of them (including the chief surgeon) felt that surgery on Ian is probably unnecessary at this time. He explained in further detail that Ians spinal cord is not stretched like a normal tethered cord. It just has extra fatty tissue around it (lipoma). I asked if there is any chance he could have nerve damage from the lipoma if we dont operate. He told us they are going to keep such a close eye on him that the possibilty of that is slim to none. So it was our call. Scott and I felt the same. If there is no harm in being overcautious then lets just wait. It was a hard decision, but after it was made I had a overwhelming sense of peace and when that calmness came over me I knew we made the right decision. Ian will have a MRI in a couple months and we will become close friends with ACH I have feeling. So thats that.  


       Good news.....Ian is crawling!! On all fours! He was sitting in the living room scooting around Sunday and he just rolled over onto his belly pushed himself up in the quadruped stance and started crawling. It was amazing! We have about 15 videos of him doing it haha. He is also getting around alot with his walker at school and when I say walker its like a mini medical universal walker.  (pic below) I am hoping we can get one for home for him. They say he is extremly happy in it and I would love for him to be able to get around at home like he does at school. 

    Brooklynn is loving school. She gets sad on the weekends when she doesn't get to go. She loves her friends and her teachers. Yesterday she came home singing a song to me that went like this :You can relax now C'mon and open your eyes. Breathe deeply now I am with you Oh my sweet sweet child Who do you think you are? You are the child of God And that will never change. She said that's their nap time song...it was exactly what I wanted to hear and those lyrics have been echoing in my head since.

 So thats whats new with us. Thank you everyone for all the prayers and support. Its nice to know so many people are thinking about us. 

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!