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