What was that?

Two days ago Carter said the sweetest thing, “T”. He finally verbalized a name for his oldest brother, Tyler. He has called Caleb, K K, for months. He has said both Mommy and Daddy, but when you pointed to Carter and said, “Who’s that?” he would always smile and then give someone else’s name, usually Daddy or Izzie, the cat. Surprisingly, it never hurt Tyler’s feelings. He never took it personally, just like he’s never taken any of the changes caused by Carter’s FPIES personally. But you should have seen Tyler’s face when he realized Carter was actually calling him by name. He had such a huge smile on his face! What a great present for Tyler.

Carter has an appointment for a speech evaluation on June 16. Although he vocalizes a lot and makes lots of noises, he has very few words that are understood by other people. I understand 90% of what he says, but then again I’m around him all day. Most of the words he says are really inflections sounds to represent words, but not the actual words themselves. This lack of verbal communication has led to Carter screaming and hitting in frustration when he can’t get me to understand what he is trying to say.

Tonight, as he was getting ready for bed, he told his daddy he loved him. It was an, “I love you” or even a “Love you”. It was just one long sound, “iieeoouuvvveeoouu”, but it was the closest Carter has ever come to saying those 3 words. They are words that can melt your heart, and tonight hearing him say them in his own way, followed by that bright sun-shiny smile, melted mine.

Carter, I love you too.

Burns and Nightmares

It only took 3 doses of Augmentin before the trouble really started. It began with a scenario I hadn’t seen in months, Carter walking around with his hand grabbing at his bottom and saying “Owwwie”. I changed him and was met with acidic poop and a bright red bottom. There was a small, raised bump on his bottom as well. I coated him with Desitin and it only made him cringe. Little did I know at the time, but Desitin is not the best idea to help extreme cases of reactive diapers. 

Later that day, he pooped again, and started to cry. This time when I changed him, we both ended up in tears. He grabbed and clawed at my arms, screaming in pain as I wiped his little bottom clean. That “small, raised bump” had turned into a raw, oozing burn the size of a quarter. The rest of his bottom was covered in red bumps and was red and swollen. I coated the entire area in Aquaphor, my new best friend. He cried out and winced in pain when I picked him up and pressed against his diaper area. When we got downstairs, every step was followed by an ouchie kind of noise. He was walking with his legs spread wide apart.  And them he sat down to read a book. The shock surprised me almost as much as it did him. He couldn’t sit down!!

We’ve had some nasty diaper rashes in the past. We’ve had one’s that have bled and covered his diaper in blood, but they never caused him this much pain. I gave him so Tylenol and we settled him in a bath. It was like having a newborn again. He couldn’t sit, do we had to lay him down. And surprisingly enough, he didn’t fight it. He just laid there while we poured water on him to help sooth the pain. It was almost 2 hours before he could sit down again. We stopped the Augmentin and it still took over a week before the acidic diapers went away, before he stopped screaming at every diaper change. The oozing burn on his bottom has turned into a scar. That was 3 teaspoons of medicine over 3 days. That was all it took to wreck havoc on his system.

And if all that wasn’t enough, we’ve had to stop the Singulair because it DID give him nightmares. How can you tell if a one year old is having nightmares? Hour after hour of crying out in his sleep. Screams waking me up, causing me to fly out of bed. Picking him up and finding him inconsolable. He was not only having nightmares, he escalated to night terrors. We went through those with Tyler. It was a phase for him and I couldn’t help make it better.  I was not about to put Cater through that too. Especially not if I could stop it.

Our medicine choices are becoming more and more limited. They seem to be causing more harm than good. Where do we go from here?

Happy Birthday Carter!!

We just celebrated Carter’s 2^nd birthday. He won’t actually be 2 until the 30^th, so I plan to enjoy every last minute of having a one year old in our home.  Parties and outings have always been a strain on the family. It seems that no matter how well we watch him, Carter always manages to get something unsafe. We have taken him to parties and I’ve worn him in the carrier the entire time, and it still doesn’t help. We spend the nights after these events with a little boy who can’t sleep. Sometimes just disturbed sleep, sometimes it’s crying out in pain and sometimes its reactive diapers that last for days afterward. I have started to wonder if he has nightmares or anxiety from these experiences. How else do I explain him crying out in his sleep, screaming and clinging to me? It is always s the same and it has made leaving the house a stress for us all.

Yesterday was Carter’s day. All of the food was safe for him. We made a “No Outside Food or Drink” rule and put that in his party invitation. Carter had 2 hours where everything really was for him. We set all the food out on the tables, and as guests started to eat, Carter wanted to as well. He asked, “Eat?” and I got to say yes. His little face lit up and he looked at me with surprise. “Me?!?” he said. I told him he could take the food right off the table and he was so happy.  I never had to say “No”, or “That’s not safe” or “Not for you”.  And when someone spilled food, I didn’t need to rush to clean it up. When Carter picked up food off the floor, I didn’t have to worry about whether it was safe.

He even got to try Cotton Candy for the first time. We rented a cotton candy machine and, although he liked watching Daddy make it, he didn’t know what to do with the texture.  He managed to eat a couple bites though.

He had a cupcake with chocolate frosting! Thank you again Amanda for coming up with such a great recipe. The Quinoa Merry Muffins were a success! Daddy helped him figure out what frosting was and how to eat it. Chocolate was a new and slightly unsure flavor, but there were lots of "Mmm's".

It was a truly magical day. Our friends and family were so supportive and accommodating to make sure Carter was safe and had fun. It may have been a short 2 hours for everyone else, but it was so important for us. Carter was normal. He was just like everyone else.

And Cauldron Bubble

Several months ago we had a huge yard sale. We got rid of all the baby stuff we had, since Carter will for sure be our last. We cleaned out all the closets and the garage. We got rid of all those things we had been hanging onto for years, but never used. It was a great feeling and a productive day.

Just recently, Carter had started losing his pacifier or Bapbee as he calls it, during his sleep. His cough has made this worse, since the Bapbee falls out when he coughs. I tried those pacifier clips, attaching them to his jammies, but he just pulls them off, pulls the Bapbee off and eventually it ends up on the floor. This results in a little voice calling out at 2 am, “Mommy!! Bapbee! Mommy!! Bapbee!”  Normally, this would be the sign that it’s time to get rid of Bapbee. But Carter doesn’t fall under the “Normal” guidelines. How was I going to keep that darn thing from falling out of bed?

A friend of mine came up with the perfect solution. She suggested taking the crib bumper, which I had taken out months earlier for fear that he would use it to help climb out, and putting it on the outside of the crib. Attach it just high enough to create a lip that would keep the Bapbees from falling out. A brilliant idea!! No need to worry about him using it to climb out and more sleep for everyone!! There was only one small problem. Remember that huge yard sale we had? Yep, sold the crib bumper. Why would I ever need a crib bumper again?

I just bought a brand new crib bumper for my almost 2 year old.  One of those Breathable Baby bumpers in Blue. Never would have guessed that would happen. We put it on last night. And guess what? I didn’t need coffee this morning! Carter slept all night last night, and all four of his Bapbees were still there with him in bed. Yes, I said 4. Hey, sleep is important!!

Fire Burn

Carter’s second birthday party is set for May 21. It will be a time filled with family, fun, friends and Carter safe food. I was trying to think of fun ways to use Carter’s safe foods. Sugar is a safe food, and what is cotton candy? Spun sugar!! We are renting a cotton candy machine for his party. I went to the store yesterday to get cotton candy sugar and paper cones. I picked up the Pink Cherry Vanilla flavored box. In the ingredient list it stated: Contains Soy. What?!?! This isn’t Soy flavored cotton candy! Why in the world would there be any reason to put Soy in this? I am still floored by the way that Soy makes it into so many everyday things! Luckily, the Blue Raspberry flavor did not contain Soy. I am also looking into using Baker’s sugar and making some without any flavoring, so I know they will be Carter safe. It shouldn’t be so hard to have a little fun!

Double, Double, Toil and Trouble

A little over 2 weeks ago, Carter went to the doctor for the return of the all too familiar cough. He had a double ear infection and another Upper Respiratory Infection. In true Carter fashion, he never once made any indicator that his ears hurt or that he was in any real pain.  We are still on the nebulizer, so the pediatrician gave us some oral steroids, Prednesolone, to treat the cough and antibiotics, Omnicef, to treat the ears.

We finished our round of medication and the cough was still there. He was coughing a little less, but he still sounded like a lifelong smoker with emphysema. It’s a cough that comes from deep in his chest and rocks his whole body. The coughing fits take a lot out of him. He loses a lot of energy from the episodes.  He coughs so hard, he throws up. He’s even learned how to throw up. I’ve never seen a one year old bend over and throw up like that. Guess he’s had enough practice! So back to the doctor we went yesterday.

Our doctor listened to Carter’s lungs and said they sounded much better than the last time. One ear was perfectly clear, while the other still had some fluid. The oral steroid did not do the job though since the cough was still there. So now we venture down a new road. We are trying Singular, which comes in little packets that I will need to mix with food. The biggest side effect, nightmares. What a trade off! Improve the cough to give him better sleep and more daytime energy, but risk night waking due to nightmares.

The doctor thinks that because of the runny nose that is still there, Carter may also be battling a sinus infection. So the Omnicef didn’t do it’s job either. But now it seems that our antibiotic choices are limited. We can’t do amoxicillin. It gave him horrible tummy pain, cramping, gas and diarrhea last time. The only antibiotic we had left to try was Augmentin. It is still part of the amoxicillin family and it’s biggest side effect, diarrhea. This medicine is hard for a normal digestive tract to tolerate. How is Carter going to handle it? We were told to try doubling his probiotic to help limit the discomfort from the medicine.

So yesterday afternoon I gave him the first dose of Augmentin. I did not do any research on the medicine’s ingredients beforehand, something I should know to do by now. Turns out that it may contain both lactose and traces of soy. So all night I waited to see how he would do. And he did great until 6 am. He woke up screaming and just wanting to be held. Was it the antibiotic?

So now I wait for the pharmacy to call. They didn’t have any Singular in stock, so they will be calling today to let me know when their order arrives.  I will ask them if they can tell me about the ingredients in Augmentin, and if it isn’t safe, then I will ask about compounding the medicine. This is yet another road we have yet to travel.

We will see what tonight brings. How will he handle the Singular? Will we find a safe way for Carter to take the Augmentin? Will he even be able to tolerate the medicine, regardless of it’s ingredients? Will the cough ever go away? Time will tell.