long time no post!

Its been a while! In fact its been so long I dont know where to start. Hmmm ok, Iets just start from the top. I originally started this blog to be an outlet for myself mostly. I find myself not really needing that outlet anymore....at least not here, but I do realize I have family and some friends that like to know how things are going. So heres a little update on my Ian boy. If you have not seen Ian in a couple months you would be shocked at his vocabulary these days! He went from saying about 10 words to maybe 100 words (Im guessing) He repeats everything! Its not crystal clear and if you are not around him much you may need me to interpretate what he is saying, but he is talking folks! Not only is he talking he SINGS! He sings wheels on the bus, let it go (frozen), itsy bitsy spider, and Im pretty sure I heard him singing row row row your boat last night. He has very good pitch like his sister :) . 

         Ian is doing a "trial run" with a bone conductor hearing aid. We ordered his own Tuesday, and should be getting that in a month or two. A bone conductor is different from your standard hearing aid because it doesnt amplify sound it just bypasses the middle ear.His audiologist says he likely has nerve damage in his middle ear that is causing some hearing loss. Its hard to tell if its the bone conductor that is whats helping him talk or if its just a coincidence. Im still not 100% convinced, because even when he is not wearing it he talks better/more. . Im just glad Ian has such an amazing team taking care of him. 

      Ian has been at pathfinders since he was 13 months old, He goes Monday through Friday and gets all of his therapies there. I remember his first day there. I was a mess! I was terrified, these people dont know my baby! He is going to think we just abandoned him here! When we picked him up I could hear him laughing down the hall. Every August we are so sad when he has to graduate to the next class room up. Last year I didnt want him to leave Ms Getas class. She was so sweet and loved Ian in a very special way. They had a special bond and I was really worried. He moved to the big kid hallway and I quickly realized his new teachers really loved him to! Some mornings when he hasnt slept all night he climbs onto Mr David ( the eptime of "gentle giant")  and rests right there in his giant lap. Ohh my gosh it doesnt get much sweeter guys! Im saying all this because I think Ian is where he is today (walking, talking, HAPPY) because of a couple things. 1 The Lord of course! every milestone I see Ian reach is like witnessing a miracle 2. Family who loves him unconditionally 3. Ians amazing teams at ACH and pathfinders, every one of them loves him and sees the same precious child I see. 

    Ian is still globally delayed dont get me wrong. He is more like at the level of a 2 year old than a 4 year old but there was a time in my life when I thought Ian may never walk (wrong) may never talk( WRONG) He is going to great things and I am so greatful to all the people helping him get there!


Ps: I cant believe I forgot not to include...Ian does not have fragile X! They did another gentic test looking for it and it came back normal!

Fragile X???

    So Ian had a follow up at DDS Tuesday. All went extremely well I thought. We talked a lot about how much he has progressed and some of his repetitive behaviors. They told me I could give him melatonin every night (YAY!) Then I asked about doing more genetic testing. If you dont remember Ian had a genetic panel ran on him when we first started this "journey" 2 years ago. The results appeared normal. The specialist said they ran the test 20 times and 1 time it came back abnormal, and just considered that a fluke. I took the good news and ran with it. I was so so happy to hear this is not a genetic thing. The past year I have really felt the need to go back and revisit genetics. I look at Ian and knowing what I know I just cant dismiss his physical characteristics AND the fact that he has delays...this to me just SCREAMS genetic disorder. The good people at Dennis Developmental agreed and told me they would help us get back in to see genetics again. THEN someone briefly mentioned fragile X syndrome. I had read about it before from the many many times searching the internet trying to find answers about Ian. So I wasnt really suprised when she said that. I also found it interesting that she mentioned it and made a mental note to do some research on it when I got home.....I honestly wish I had not done that!  When I got home I googled fragile X and I read article after article, every site I could find on it. The more I read the more I was convinced this is what Ian has. This is it! No denying it. He has the typical characteristics, theres no denying it. I know it sounds like Im jumping the gun here but my gut and my head tell me it IS fragile X.
    What is Fragile X:  fragile X syndrome (FXS), the most common cause of inherited mental impairment. This impairment can range from learning disabilities to more severe cognitive or intellectual disabilities. FXS is the most common known cause of autism or "autistic-like" behaviors. Symptoms also can include characteristic physical and behavioral features and delays in speech and language development.
 
       I read and read and read. Two things have stuck out to me and have made me a complete emotional wreck these past 2 days. 1. Fragile X is genetic, and he got it from ME! My blood gave this to him. I am walking around with a premutation I had no idea about. Brook probably has the premutation too. One day I am going to have to tell her "hey you may want to think twice about having babies ect ect..." My sisters might have the premutation. It is a terrible terrible terrible horribly  indescribable feeling knowing my genetics did this. Like seriously it tears me up like you wouldn't imagine. Logically that makes no since I KNOW. Of course I didnt know this would happen blah blah blah, whatever! It still is ripping me apart! 2. These boys with fragile x are very sweet then post puberty hits and they become very violent and often times cant live in the home for safety reasons!! WHHHAAAAT? I dont even want to go there right now, emotionally I just cant....
   
     SO Ians genetic appointment is 2/14/2014 (happy valentines) I am praying praying praying it is NOT fragile x but in my heart I know it is....so I just need to be prepared for Dday (diagnosis day) . I know this post is not as cheery as it usually is but its where we are right now. Thank you for reading and if anyone reads this who knows about fragile x or ANYTHING please contact me. chastity_16_99@yahoo.com 501-580-0436. Please pray for my family.

ready,set,go!

Its been quite a while since my last post. Mostly because its been pretty calm around here. We had a nice break where we were not at ACH every month for some random appointment. Ian continues to thrive at his own rate. He is walking great and almost running! He can say quite a few words. His favorite is "no" of course and "another". When he plays with his cars he says "ready, set, go!". This morning at the audiologist during a hearing screen he said "I heard that!" Every time he says something or runs down a hallway towards me I am filled with thankfulness.

     So today was just a routine appointment at the audiologist. We are STILL trying to get a decent hearing screening done on him. He WILL NOT let us put headphones on him! You would think it was pure torture. We will keep trying I suppose...During the routine exam Dr Jessica noticed his tubes have fallen out. (Dr Jessica is possibly my most favorite person at ACH btw). So heres hoping for no fluid in those ears.

    Ian moved classes on Aug 19th, he is now on the "big kid hall". He transitioned pretty well. I think he likes his classroom. His therapist have commented on how well he is doing, which is so nice to hear! 

      Ian goes for his annual checkup in a few weeks to see Dr O'Neill. I have been thinking about it and I think I am going to ask him to refer Ian for another genetics test . I have this gut feeling that it needs to be looked at again. When they did Ians genetic test 2 years ago they just drew his blood and looked at his DNA. I have talked to several people and I have been reading online and for a complete genetics test to be done Scott and I's blood should be taken as well. If anyone has experience with this let me know please! So thats just a very small summary of whats been going on. Thanks for reading!

Dreams and wishes

   I think everyone knows this because Scott and I seem to be shouting it from the mountain tops these days, but if you have been living under a rock, heres the great news: Ian is walking walking walking!!! In fact he is almost running sometimes. He thinks its fun to walk up to the television and turn it off when I try to watch a show. I was thinking about this whole journey and how I wanted so badly for Ian to be able to walk that I would dream about him randomly getting up and walking into my bedroom in the middle of the night. I was always so sad when I woke up and realized it was a dream. One time I took the kids to a fountain and we were throwing pennies into it and making wishes. I threw a penny and out loud said "I wish Ian could walk" I know some might think that was wrong and I should have been praying for that not wishing, but at that point I was a little prayed out and had no more words and I just needed to vent. I was so desperate I was throwing pennies in a fountain like a little kid....that was about 8 months ago.

   I feel like so much has happened since then. We go to a new church. I have a restored faith in "Christians", there for a while church goers were not my favorite people. I still feel very hurt and abandoned by a church we used to go to but thats the past and that can be healed. Our family has grown together in so many ways and we are all moving forward.

   Thank you everyone for all the uplifting comments and prayers and thoughts. Ian still has things to conquer but the "biggie" was walking and I feel like thats a great start! I think I will always be ecstatic watching Ian walk even when he is 30 years old.  :)

Lets catch up!

Lets catch up!
Well Ian had his eval last month at Pathfinders. It went better than ones before.  I do feel like the teachers and therapist are frustrated with me because I dont make Ian walk as much as they would like. I told them I want home to be his safe haven and I pretty much let him get around however he likes (usually scooting). For some reason he doesnt mind walking at school or at other peoples houses, but at home he does not want to walk...at all.
 
        On the 23rd Ian goes for a "booth hearing screen". We have done these before and they always were inconclusive but I think they are going to try out hearing aids too. Im not sure how thats going to work because he hates hats and anything else that touches his head or face. Im not sure if his hearing is the problem with his speech or not. He has been trying to mimick us more and he seems like he can hear when I ask him questions. Me: "Ian do you want some juice" Ian:" YEAH!" So we have conversations :).
 
Its been really hard for me to come to terms that Ian will be 3 in July. Sometimes its easy to forget his age and it just feels like I have a 1 year old. Its easy to do because he is small for his age too. Its really hard sometimes to see other kids that are his age and its like a slap in the face, sucker punch to the stomach kind of feeling. There were several people who were pregnant the same time I was with Ian and I get a whirlwind of emotion when I see their 2 year old running and jumping and playing and singing and talking and doing what most 2 year olds do. Honestly its easier to just stay in my own little world where this is our normal, and thats that. Its even hard to be around babies because little babies are starting to pass up Ian and that just really gets to me. I dont know what is in store for us four, but I trust God has a plan. The day I was driving home after the Dr basically gave me the worst news of my life, I said a prayer. First I cried and said "Why MY baby?"  but then I told God "He is my son but he is also your son and Im giving him 100% to you and I just want your will to be done" I mourned and went through a emotional process but though the whole thing I had a serene peace.....wow well I didnt think I was going to go there when I started this entry. I will try to make my next entry sooner. Thanks for reading!

Can you hear me?

      Yesterday Ian had new tubes placed in his ears and also they did a sedated hearing screen. Ian has had many hearing screens before, but he was always awake and fighting the process or he had fluid in his ears. So they were always inconclusive. So he was supposed to start the procedure at 12:30 yesterday but I slipped up and gave him some cereal earlier in the morning so it had to pushed for later. It was 4:30ish when it finally started. We were at Childrens AAALLLLL day. So when it was finally all done Dr Richter came out and told us the waves on the hearing screen showed that he could be moderately hard of hearing. What sounds like a normal talking voice to us he hears it as a whisper. So they did mold of his ears to make hearing aides and we will go back in a month and see what we do next. Its not for sure that he will have hearing aides but it sounds like its very likely. Part of me is sad that he has one more problem on top of everything else, but theres a very small part of me that is really hoping that maybe this is the key to his speech problems. I would really love him to be able to communicate with us better. I dont know to be sad or excited...Im definitely hopeful! Next week is Ians semi annual evaluation at school. I never enjoy these. I always get really sad looking at the facts and listening to Ians problem areas. I will post again after that.

Dennis Developmental Center

     Today was Ians long awaited appointment at Dennis Developmental Center. I was highly anticipating it because I thought we MIGHT get some answers on some things. So let me just start off saying this place is awesome and the staff there are phenomenal. They are so understanding and because I know they are so used to seeing kids like Ian I didn't have to worry about "what if he has a full blown fit here? They are not going to understand" I think Dr Fussell is a God send, and her nurse Lindsay too! Anyways...we get there and sit and talk to the nurse for a good 15 minutes just telling her where Ian is at, what its like day to day, how he is improved, and what hasn't  She then asked us "Well how are YOU guys doing with this?" I got a BIG lump in my throat, I almost couldn't answer the question. Talk about catching me off guard. I have never been asked by any Dr, nurse, etc how I was doing under all this stress. I managed to get out "ummm its very stressful" she seemed genuine and it really meant a lot to me. She gave us the opportunity to ask any questions. So I asked about Autism. I got some interesting information. First IF he is autistic we are doing everything we would be doing anyways so its not like we are losing time or doing anything wrong. So we then met with Dr Fussell and talked about starting PECS in his speech therepy. PECS is a way to communicate using pictures. Here is a cool video of a kid with CP and autism using PECS  http://www.youtube.com/watch?v=OKQdMH7Wiok  We got about 6 different pamphlets from parents night out for parents with special needs children to more clinics he needs to go to. It was a lot of information!  SO no big life changing answers but I think it was a good visit and Ian had a good time. If anyone knows about PECS or has had experience please let me know, Im very curious!



Here is Ian waiting for Dr Fussell

Autism?

     First post for 2013! Well nothing too terribly exciting. Mostly this will be about some things I have been thinking about, and maybe even gets some of my readers thoughts on the subject? And the subject is ........AUTISM. In the very beginning of this journey (late summer 2011) I had a tiny little thought "is he autistic?" I brushed it off. When we took him to the Dennis Developmental Center in Aug to have him evaluated they immediatley excluded autism because he has good eye contact and is very "touchy". The thought has come and gone over this past year...maybe he is, maybe he isnt. I finally got the nerve to research the different types of autism and see if he had any of the characteristics. He does. Yes their are autistic kids that are cuddly and will look you square in the eye, and not all of them are musical geniuses  Anyways I am going to to list the behaviors I see in Ian and maybe someone who knows anything on the subject can give me some insight:

1. Flapping arms when excited

2. EXTREME tantrums that sometimes come from nowhere

3. speech delay (says MAYBE 3 words)

4. excessive spinning wheels (he will spin wheels on a car pinwheel or anything for as long as you let him)

5. fascinated with water                                                   

6. fascinated with ceiling fans and light switches

7. HATES HATES HATES getting dressed

8. Seems happier alone sometimes
9. When upset he will throw whatever is in his hands then cry for it back just to do it again

    Theres probly some more that will come to me later but those are the main ones. He goes back to Dennis Developmental Center Feb 12th. I will be very interested to see what they think of him now. I have several friends that think he is, but I have been very careful I dont want to label it just yet but then again if he is on the autistic spectrum we need to know ASAP and learn how deal with that. If somebody has experienced this first hand or knows a lot about the subject please feel free to e-mail me chastity_16_99@yahoo.com

    Im not sure if I posted on the last one that Ian will have new tubes put in soon and while they are doing that they will go ahead and do a hearing screen while he is sedated. He just doesnt like anything touching his head or ears and completley freaks when we try to do a hearing screen awake.  So thats all for now!! Thanks for reading...really.

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!