Beating the Odds

Let’s take a trip back to 2008. Cameron was born November 26, 2008 through an emergency C-section after 26 hours of labor. He was 7lbs 14oz of beautiful. My pregnancy and his birth should have clued me in to the fact that he was going to be a tricky one. During his first year, we had many, many issues. He projectile vomited every day, all day. I’m not talking little bit here and there, I’m talking poltergeist, pea soup, spinning head puke all day. He didn’t grow or gain weight. He was finally diagnosed with moderate dysphagia and Eosinophilic Esophagitis. He was then put on a very expensive elemental formula. Things began to get a little better. Then he dropped off the charts. Two weeks before his second birthday, we had to place a gtube to get him back up to weight. It worked. Around this time he was also diagnosed autistic. He had been nonverbal until he was 3.5. We had to teach him sign language just to communicate. We had in home therapies; 4 a week. Then we also did outside therapy. He attended developmental preschool for 2.5 years. He has undergone 20 endoscopies, 7 surgeries, and numerous elimination diets where all he could eat is sugar. He has sensory processing disorder and has lost many foods.

That brings me to today. Last week we had Cam’s case conference for kindergarten. He is no longer eligible for an IEP. Think about that for a minute. My former nonverbal, autistic, falling off the charts boy, has beat the odds and will attend a normal kindergarten class. They all were amazed at his progress. He has tested out of speech and occupational therapy. The kicker…. They say he will be going into kindergarten ahead of 90% of other kindergarteners. HE WILL BE ADVANCED!!!! I am so elated!! I just can’t believe it. We did it. All my research, fighting, and patience has finally paid off.

The things my little man can do astonish me every day. He can add and subtract, he is eager to learn to read. He can write his whole name with a little cuing on spelling. He knows nearly every dinosaur known to man. When I say knows, I mean specific genus. You can’t say pterodactyl. It’s a pteradon. He knows their names, where they live, what they eat etc. He is also one of the most compassionate boys I know. When he sees someone who is hurt physically or emotionally, it pulls at his heart. I will never forget the first time he cried for someone. It was for Pluto. We were watching an episode of Mickey Mouse where Pluto was being left out and Cameron just balled. He was sad that Pluto was sad. He just did this this week too to a scene in Frozen. He always wants to include and be included. He has such a huge heart.  I couldn’t imagine a world without him in it. He is destined for great things. As of now, he wants to use his gifts to be an engineer. I can’t wait.

The Eosinophilic Curse

We've had a busy few months. Sadie had her tonsils and adenoids out to see if it would help with her chronic vomiting. Unfortunately she is still having episodes. They aren't as severe or long as they were, but still happening. Our next step is a PH probe that they will insert through her nose to test her reflux. We will be talking about that August 1st.

Cameron also had an endoscopy (his 17th) a few weeks after Sadie had her tonsils out. He was showing signs of an EE flair up. He was complaining of stomach pain, vomiting, and choking. As soon as she inserted the scope into his esophagus we knew it was bad.  Here is what we saw.

See all those little white blister looking things? Those are Eosinophilic Abcesses. The pathology report indicated that he had greater than 100 eosinophils per high power field. what this means is that there were so many of these cells that they stopped counting at 100. To put this in perspective, 18 eosinophils per hpf is considered high. To quote the M.D. evaluating these results, he states, "The patient has had prior esophageal biopsies with moderate levels of eosinophilia compatible with eosinophilic esophagitis. The findings in the current biopsies are certainly compatible with eosinophilic esophagitis. Not only is there a very large number of eosinophils present there is also superficial layering of the eosinophils and extra eosinophilic granules. Small occasional eosinophilic microabscess can be identified (4 or more eosinophils clustered together)."

What does this mean? His body is attacking itself. The food that he is eating is essentially poisoning him. We went to Dr. Wu for allergy testing again. We did a prick test first to test for immediate reactions, then a week later we did patch testing to test for delayed reactions.

 

Prick Testing

 

 

Patch Testing

 

 

Our results found that Cameron is now allergic to wheat, beans, yeast, egg, barley, and oat. Cam now has to be gluten free. He is having a hard time with this. for the last 18 months he has been able to have whatever he wanted that didn't contain egg. He can no longer have any pre-made bread. Even GF egg free breads contain yeast. I attempted to make an allergy free bread. It turned out more like a quick bread. He wasn't a fan. For carbs, he sticks to Trix cereal and a cracker by Glutino that we finally found after many many other cracker purchases. With the allergies and his food aversions, it is making it really hard to get his nutrition. We've started tube feeds again. He also showed a vitamin D deficiency that we are supplementing for.

 

It's heartbreaking to have to tell him no all the time when he's hungry. He's ALWAYS hungry now and nothing is suppressing it. Before carbs were 90% of his diet. I'm usually upbeat and positive about all this but last night I broke down after watching a commercial about allergies. This stinks. It wouldn't be as bad if his body would just pick an allergy and stick to it. They change constantly. He is going to have to deal with this forever. Gtube feedings, multiple meds, label reading, etc... We really need to find a cure.  Until then, we will just take it one day at a time. One meal at a time. 

Top 5 Baby Items You Will Never Use And Why

Changing table
    Yea it's a nice thought. everything is organized on the table and in reach. are you really going to go back to the nursery every time your baby has a poopy diaper?? I think not. We used ours for the first week then it was just more convenient to change the baby wherever i was. It saves time and energy, and trust me with a newborn you have little of either.

Wipes Warmer
    Really? I'm fairly certain that the baby is more concerned about you promptly removing the poo than with how warm the cloth is. I've rarely ever seen a baby scream from a cold wipe. wad it in your fist for a few seconds and it will do the same thing.

Pacifier wipes
    Baby wipes work just fine. With my first i was anal about keeping them clean. With my second if it fell on the floor i popped it in my mouth or wiped it with a diaper wipe. (within reason) She was rarely ever sick. She actually has an amazing immune system.

Name Brand Diapers
    This is such a pet peeve with me. If you have tons of money and want to spend all that money on name brands by all means go right ahead. For those of us more frugal people, Store brands (most) are amazing. Walmart, Target, and Meijer all have amazing diapers. I've tried the name brands and all of them except luvz leaked. I hated them. The three above have been the best i've found. A pack of walmart diapers are under $6, $13 for a box. Name brands are usually $9.97 a pack and close to $20 a box. Do the math. Your baby doesn't care what brand their diapers are. (as long as no allergies are present) I will say I do buy name brand wipes. I've found Huggies to be the best. I hate the "clothlike" ones. Your fingers go right through them.

Johnson and Johnson products.
    Do your research. They just had a recal not too long ago because there was a chemical in them linked to causing cancer. The  reason those products are tear free is that there is a chemical that numbs your baby's eyes so they can't feel the burn. I've recently switched to Burts Bees baby shampoo and wash. it's $8 a bottle but definantly worth it.

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.

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!!

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!!!

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.

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.

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.

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.

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.

Update

I havn't been keeping up with this as much as I wanted. I am going to try to set aside one night a week to write.


I think I will just give an update on things going on with us.

Cameron is slowly getting used to his tube. If I ask him to help me with it he seems to respond better. He gets his new M-Key button the first week of January. This one will give him more freedom and will get rid of the need for him to be taped all day. Its making it hard since he is allergic/sensitive to the tape/adhesive. He has a LOT of granulation tissue that needs to be burned off. They want to wait until he gets the new button to reduce the risk of burning the good skin. We also recently discovered that his stomach isn't emptying properly. So all along he may have not been hungry all the time, but rather always full. We've made it up to 80ml/hr on his pump. He's down to 1290ml a day. Hopefully we can get up to bolus feedings once we figure his medication out for emptying his stomach. He is on an antibiotic for it that expires every 10 days. I didn't realize that when my husband picked it up they gave him one bottle of 100ml instead of 3 bottles. So this bottle expired and it says I can't get anymore until the 17th The pharmacy i went to is the same chain but a different location. She called and got it all figured out but had to order it. Guess what.... Its on back order!!! REALLY????? She called around for me though and found that out of the 4 she called one in Avon had it. yikes. On a lighter note, he has gained about 2.5 lbs. He looks so good!! He's starting to not feel bony!!

Sadie is standing on her own. She is thinking about walking. She has 2 teeth on bottom. She is also getting 2 teeth on the top but the two next to her front teeth. She will soon look like a vampire. lol She will be cute anyway. I think her hair has finally decided it will be a dark strawberry blond. We have been having a problem with Sadie having horribly acidic watery poos lately. Our amazing pediatrician had me ask Cam's GI about it. She said she wants to test her for malabsortion. Here we go. She is going to do it even though she isn't a patient. That's what happens when you see the best GI in town. Shout out Pediatric Gastroenterology Assoc. of Indiana (payton manning childrens hospital)!!!!!!!


Matt and I are doing well. I'm becoming more frustrated that no one can help me with my weight. I gained a lot with the pregnancies and am having trouble getting rid of it. I was big before and still no one could figure out why. I've been tested for everything and have been told I'm Healthier than many people they have seen. My doc said i am not getting enough calories and my body is then storing everything. yay rah. so now he tells me i need to eat to loose. not going so well. when you have 2 under 2 you often forget to eat. not to mention that i can't eat in front of Cameron for fear of hurting his feelings.

Christmas is almost here and Matt and i are uber excited to go shopping next Saturday. It's Sadie's first Christmas and the first that cam might have a clue as to what to do. It will be here before we know it!!!

Cheated

Today was a really hard day. I was diagnosed with narcolepsy about a month ago. I've had a problem with it for about two years now. I don't know why it took so long to become a problem. It may have been that for many years i worked nights and slept days "masking" the symptoms. My neurologist started me on medication to help me stay awake during the day. It worked great for a while. I felt "normal". Then it started to fade. I have good days and I have bad days. It seems worse now though. I think its due to knowing what normal feels like, so that now I'm more aware of the fatigue. Some days all i can do is count down the hours to nap time so that i can sleep. Its frustrating. I'm so tired during the day and then when its time to go to sleep at night i can't. Then i want to sleep in and ask Matt to get up with the kids so i can sleep as much as possible.

I feel like I'm letting my family down. I can't get down on the floor to play with my kids because I feel like I'm going to fall asleep. I get short with my son because I'm so tired then feel like the worst mom. Matt doesn't understand what its like yet. I know he gets frustrated when i make him get up early nearly every day. I try to give him a day on the weekend where i get up with the kids and let him sleep. He doesn't understand how hard that is for me. When he comes home from work all he wants to do is relax. I understand that. I hate asking him to take over, but most days i am BEYOND exhausted by the time he gets home. After we get the kids in bed he always tells me to go to bed early. Its not that easy. I lay there for hours before i finally fall asleep.

How do you make someone who doesn't have this illness understand the toll it takes?? I love my husband. He is a great partner and father. I don't know if I'm asking too much or if it will just take time for him to fully grasp it. I've been reading some forums about narcolepsy and there seems to be a high rate of divorce among couples with a narcoleptic partner. I don't want to end up that way.

Bad day... bad, bad day.

Will it Never End?

Yesterday I took my daughter in for her 6 month checkup. all went well and she is finally back on her growth chart for her weight. YAY!!! I have the most AMAZING pediatrician ever. She asked how my son was doing. I began to tell her his measurements that his nutritionist had taken the previous day. She, once again, was worried about him.

A little back story:
At 10 months my son was diagnosed with dysphagia, eosinophilic esophagitis, severe reflux, and NUMEROUS food allergies. He was put on an elemental formula to help him gain weight and grow.


So she asks what hes eating. Hes been off of the formula for almost 2 months and is on soymilk and regular foods. I have been adding as many calories as I can to his milk. He gets a decent amount of calories and is still not growing. He hasn't grown in months. She then tells me she wants to test his thyroid and hormone levels. Upon the results of that he may need a growth hormone. Ok. easy enough. Then she kinda drops a bomb on me.

"I want to run a sweat test."
Me, "What does that test for?"
Doc, "Cystic Fibrosis."
Me, "ok."

Now, I'd heard "cystic fibrosis" before. It wasn't until I got home and looked it up that I remembered what it was. I immediately began to cry. When I got to the line that read "average life expectancy, 35 years", I lost it. I know she is just testing him to be sure. A lot of his symptoms would fit that diagnosis. I feel confident that he doesn't have it, but in the back of my mind I know there is still a small chance that could be the case. All I could think was that my poor little boy would never be able to have a normal life.

My husband keeps telling me not to worry and just wait for the test. "He probably doesn't have it" I wish I were as cool and confident as he is. As a mom, all I can think about are the "possibles". It's POSSIBLE he may have it... It's POSSIBLE he doesn't. I just wish we could get a definitive answer to his problems. all doctors involved agree that they havn't seen a case like my son before. He is unique.

For the next week or so I know that though I may try to hold it together, all I will do is worry. I pray the days go by fast and we can be at peace with whatever the outcome may be.

Introductions

My name is Andrea. Saturday I will be 23. I'm married and have a 14 month old son and am 8 months pregnant with our daughter. At the moment I'm a stay at home mom. This was definitely needed this year due to my sons health.

I'm starting this blog I guess because I have a lot going on in my brain and can't really get it out. I'm hoping that by writing down my thoughts, fears, joys, and pains that I may be able to breathe a little easier even if no one knows about it.