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.