Wednesday, December 7, 2011

Updates

We are in our new home. Sorry for not posting pictures. I'll get them up ASAP. We are loving it here. There is room for the kids to run and play and I don't have to trip over them.

So whats new with us?

Cameron started preschool!!!! He is in a developmental class at Wayne Township Preschool. His teacher is the sister of his ST through first steps so it's kinda cool that he's staying "in the family". I know Kensey is looking in on him. He loves it there. Loves getting up and riding the bus. Oh did I mention he rides the bus???? That was his request not mine. He gets so excited when the bus pulls up in front of the house. Tonight he has a Christmas festival at school. Hopefully Matt will get off in time to go with us.

Another note about Cam. He had to have an upper and lower scope yesterday. It didn't look to promising. He had inflammation in his throat, duodenum, and rectum. The throat means the EE could be back, but the rectum could mean that he now has Eosinophilic Colitis as well. Hopefully that's not the case. We will find out in about 2 weeks. The worst part is if it is back we have to go on an elimination diet again. No food for Cameron. He was just starting to eat really well. Guess it's back to popsicles and DumDum pops. We shall see.

Not a whole lot going on with Sadie. She is talkin up a storm. She is very opinionated. I can't wait to see how her personality progresses over the next 2 months before her birthday.

We can't wait for Christmas. The kids are getting so excited. Cameron said he wants Santa to bring him "red presents". I love that kid. Sadie just agrees.

Merry Christmas everyone.

Thursday, October 13, 2011

Answered Prayer

We have been looking for a bigger house for the better part of a year. We gave up at the end of the summer because we couldn't find anything we could afford that wasn't horrible. We had pretty much given up hope.

A little back story.

Our neighbors that lived beside us when we moved in put their house on the market last spring. No one was interested so they had let his brother move in on contract. Well a few weeks ago he tells Matt that they were moving out. I immediately thought about how awesome it would be if we could live there. Said a few quiet prayers here and there.

Fast forward to Tuesday.

The owner came back to tend to the house. Matt and I were outside and they were loading tomatoes into his suv. They came over and offered us some. We talked about the house and she commented that she didn't know what she was going to do. I made a "joke" that if they ever wanted to rent it let me know. Her eyes lit up and she took me on a tour of the house. It is a 3 bedroom, 1 1/2 bath, big kitchen and living room, tons of closets, the whole yard is fenced in, and has a heated "mancave" behind the large garage. Tonight we signed the papers to rent it at the same amount that we are paying now. :) He said we were the answer to his prayers as well. He said he hates tomatoes and never touches them but went behind the house to pick them on a whim. That's when they offered them to us and the ball was rolling. Amazing how God works.

Now we just need an electric stove and a refrigerator. I am trying to stay positive, but we are soooooo tight on money that the next 2 paychecks are already spent. I have no idea where they are going to come from. I'm praying that God will provide just as he did the house. This is an amazing opportunity for our family. I just pray it all comes together. Pictures to come once we start moving in!!

Tuesday, August 23, 2011

Update on Cameron

His genetic panel came back and everything was normal. Thank you Lord!! So now his diagnosis is just Autism. We have to wait and see what the extent will be. Right now he has been going downhill at a somewhat steady pace. He gets worked up about the smallest things. He also will not let Matt even touch him most days. I feel bad. I know Matt just wants to be his daddy and play with him and cuddle. I can see the hurt when Cam says no and runs to me screaming. Hopefully we can work on it.

Cam also had his Tonsils taken out Aug. 15th. This is Cam's 4th surgery, and 13th time going under anesthesia. He did well the first 2 days. The 3rd day was a disaster. Cam was in soooo much pain. This boy HATES medicine but started asking for it when it got close to time. We ended up in the ER at Payton Manning Children's Hospital twice in 3 days. Once for dehydration and once for bleeding and infection of his G-tube site. It's sad when your son is excited to get to the room because he knows exactly what movies they have.

The last 4 days Cameron has been complaining of chest pains. Mostly when he sleeps. Ped has no idea. His lungs were clear. His O2 level was only 94 when we got there but went back up to a solid 98 before we left. She sent us to his ENT today. Dr. Stephens decided that the best thing to do would be to do a Sleep Study at St V's in the next week or so. Hopefully we will find something out. That is if Cam can stand to keep the sensors on that long. I've had 2 and hated it. I have no idea what he will think.

We have also added a physical therapist to our list. Our updated list includes:
  • Physical Therapist
  • Occupational Therapist
  • Speech Therapist
  • Developmental Therapist
  • Nutritionist
  • Geneticist
  • Gastroenterologist
  • Neurologist
  • Allergist
  • ENT

I am also looking into signing him up for Hippotherapy. I hope he will be open to it.

Well that's where we are. It's been exhausting!!!

Sunday, August 21, 2011

A Bit of Selfishness

I've been reading and hearing a lot lately about how giving yourself completely to taking care of someone can cause you to loose yourself. I've been thinking about if I had my way, what would I do. Here's what I've come up.

  1. Go through training to be a pharmacy tech.
  2. Finish learning sign language in hopes to be a translator
  3. Finally see the ocean
  4. Visit Anne Frank's hideout
  5. Go to Africa
  6. Build my own library with all the books i wish i had time to read
  7. Learn to play the piano or guitar
  8. Sing again
  9. Find time and places to make friends
  10. Get made over.
  11. And last, Get a good camera and pick up photography again

Maybe someday I'll be able to check some of these off the list. Hmmmm... What a dream.

Tuesday, July 26, 2011

The Fear of the Unknown

We are still waiting for Cam's genetic test results to come back. This is the worst feeling in the world. I want to know sooo bad, but then again I don't. Knowing that Cam may be autisitc makes me see the little things I wasn't seeing before. The behaviors he has, the tics, the inability to express what exactly he feels.

Growing up I always told myself that if God decided to give me a special needs child I would be the luckiest mom. That he trusted me to take care of one of his special children was a gift. I still feel that way, but also see how nieve I was. It's hard. There are days when I feel so angry and cheated.

Cam relys on me for EVERYTHING! He is at a point that I am the one he wants for everything. He does not want Daddy to even touch him sometimes. This wears me out and hurts Matt's feelings. If I were to leave while Cam is awake he will scream until I return.

I love my little boy. Every time he wraps his arms around my neck and squeezes I'm reminded how special he is. He is so very smart. He recognises letters. Can do puzzles like no one's business. I love my boy and hope that I can give him every opportunity that he deserves.

Thursday, July 7, 2011

A Hard Blow

I have felt for a long time that there had to be something bigger going on with my son. I just knew that it wasn't just random coincidences. After fighting for what I feel, I got my answer today.

My son is Autistic.

I took Cam to the Genetocist today. When we got there he had a full evaluation with an occupational therapist to test his cognitive, fine, and gross motor skills. That went well. He tested above average in cognitive ability, slightly above average in fine motor, but below average in gross motor. She and I discussed ways to help him in those areas then went back to our room to wait for Dr. Escobar.

The doctor came in and asked me why I was here. I voiced my concerns and how I've been brushed aside when I voiced my concerns to others (excluding our amazing ped). He commented that moms know when there is something going on. He agreed that more docs need to listen to what we are saying. He then did a physical exam and told me what he was seeing.

Aside from the obvious developmental issues, he noticed Hypotonia, loose joints, short fingers, and a larger head in relation to his face size. All physical markers of autism.

He is testing him for a few more genetic disorders, but said he felt comfortable telling me he has autism. I was relieved and terrified at the same time. I'm sad for the dreams I had for him, but happy that we can now move forward and know how better to assist him.

We have a long road ahead of us.

To my husband if you are reading this,
I know you don't want everyone to know, but this is how I cope. I hope that you will be patient with me as I find my way to being a better mother and advocate to our Miracle Babies.

Tuesday, May 3, 2011

bearing my soul

I always try to be the strong one. I have since I was little. I felt it was up to me to hold everything together. I give and give until I have nothing left. I always put everyone else before myself. In doing this, I've learned to keep my feelings, worries and fears to myself. I find myself wishing people could just read my mind, know what I'm feeling, and tell me it will all be ok.

Lately I've been feeling very envious of those around me. People are graduating with degrees, landing great jobs, and even buying homes. I've been feeling like a failure for a while. I made a bad decision to take some time off school to find a better one. That didn't happen. I ended up in an abusive relationship and it all went downhill from there. I want so badly to go back to school. I want to be a Pharmacy Tech. It wouldn't take me that long to do, but you need money and time to do that. Maybe one day.

The immediate future scares the crap out of me. Matt landed a great job. He's excited about it and looks forward to finishing his training and getting in the feild. When that happens we are looking at 60-70 hour weeks; 6-7 days. While this will ensure that we are financially secure (more than we have ever been) and makes it possible for me to stay at home, I realise that this basically means I will be "single" mom. With his old job, I was on my own 8 hours a day 5 days a week and thought that was hard. I won't have someone to lean on. Kudos to all you single moms who raise your own children AND have full time jobs. I don't know how you do it.

I've been wanting to ask or help so much lately. Everyone has jobs or they are busy. Some people just don't want to deal with the extra demands that come with taking care of my son. I am blessed to have three wonderful women that help when they can. My amazing, wonderful cousin Jennifer is my rock. She has been known to drop what she is doing and be there for me when I need her the most. She is who I aspire to be like. She has such a giving heart. I was also blessed to have met my friend Amy. She's my "been there, done that" advice giver. She has three amazing kiddos of her own. Although our children are vastly different she is always there t help me figure out the best way to do things. She has also been there through some of my hardest times. She is so understanding. She takes me for what I am. She pulled me out of my depression after my son was born. She's like the light at the end of my tunnel. If I'm having a bad day I'll give her a call. She always has some funny story about something her kids did or said and I forget all about why i was upset to begin with. She's also been key in helping me deal with my "disorder". I know God put her in my path to show me that I can do it. She's been living the life I'm headed for for a while now. She does it with such grace and patience. She wouldn't agree but she does. And then there is Sherri and her kids. What can I say. You are one f the few brave souls to keep my children so that I can have a quiet HOT dinner every once in a while. A million thank you's!!!

I miss my family. Plain and simple. I miss the holidays at my grandmas. I miss family reunions. I miss feeling like I belong where I am. Don't get me wrong. I LOVE my husband's family. They have brought me in as one of their own. I just wish she got to see each other more often. Sometimes I just feel alone. I miss "my people". Sometimes you just need a hug. It's been a while since I've had a hug.

That's all I have in me to write for now. Until later, adios.

Wednesday, February 23, 2011

I'm a special needs momma

When I was 18, I got a job as a home health care worker. I loved my job. I loved that I got to work with people with special needs. It made me fell good that I was helping someone live independently and happy. Little did I know that God was preparing me for my future.

Cameron was born November 26, 2008. He was a stubborn little guy. After 26 hours of labor, he was delivered by emergency c-section. Other than a little jaundice, he was a very healthy 7lb 14oz little boy. He refused to breastfeed. This was just the beginning.

When he was 3 months old, I noticed that he would break out in a rash shortly after eating. I asked my pediatrician about it and he just brushed it off. I went back three times about it and finally got a smartelic response that I could change his formula. Did that. Went to soy and the rash went away, but he was still projectile vomiting all the time. "It's just reflux." Bull. When he was 6 months old, he kept gagging and choking on baby food. "He probably just doesn't like that kind. Try another." Went back three times about him choking on purees. the last time his ped was behind so we saw his partner. He ordered a swallow study and low and behold, Cameron has moderate dysphagia. Go figure!!

Cameron was referred to a Gastroenterologist. We found out through her that he had Eosinophilic Esophagitis. She sent us to an allergist, who found that Cameron was allergic to nearly EVERYTHING he was eating. We started a new formula and started avoiding food. The only approved food was sweet potatoes and pears. He started having trouble loosing weight. I took him to his Ped who then had the you know whats to tell me to just feed him the foods he's allergic to because, "I've never heard of someone being allergic to some of these things." As if just because he never saw it it doesn't exist. That was the last time he ever saw my son. We switched to a ped who was a friend of mine. She took me seriously and believed me when i felt something was wrong. So far I've been right 99.9% of the time.

Cameron is now eating through a G-tube. He has bulked up and is no longer the sack of bones he once was. He has a Moderate speech delay, fine motor delay, and some left side weakness. He sees an Occupational therapist, speech therapist, nutritionist, and soon a developmental therapist once a week. He sees a Gastroenterologist, Neurologist, Allergist, and soon a Developmental Ped.

I am asked all the time how I do it. I have two under two, one of which is a special needs child. I do it because I have to. God gave me my special boy and blessed me with my daughter. I am my sons voice. I fight for him tooth and nail. That's my job as his mother. Everyone always asks how I'm doing emotionally with all the stress. Truthfully, I have days where I want to cry and ask God why my son can't be normal, but what good will that do? There is no point is constantly dwelling on the negative. If I do that, I will loose my will to fight for him. I choose to be strong and a fighter because if I'm not, he looses. Not me. I used to be one of those people who hated conflict. I've definitely changed that. I'm not afraid to question his doctors and fight for the test he needs at the inconvenience of those involved. I think that's why his doctors respect me like they do.


I saddens me sometimes to see mothers of normal, healthy children taking it for granted. Don't get me wrong, everyone is entitled to the occasional "this is hard", etc. Those of you that complain EVERY day about the small things should thank your lucky stars that that is all you have to complain about.

I didn't choose to be a special needs momma. It chose me and I am embracing it. Who knows. This special little boy who will grow up stronger due to the obstacles he has overcome may just turn out to be the next president, find the cure for cancer, He may just change the world. I can't wait to see.