Then Again, Maybe We Don't

So, today I got a copy of Owen's lab report. It shows that Owen responded to 6 out of 12 serotypes, or 50%. However, it states that "should respond to at least approximately 70% of pneumoccal serotypes". Clearly 50% is not at least 70%!!!! I am so upset & frustrated!!! I will be calling the office in the AM!!!

We have antibodies!!

Today was 1 week since Owen's blood draw for the pneumonia titer re-vaccination test. The Dr had said it would take several days to a week to get the results, so I anxiously checked my phone all day. By the time I was able to check my messages, I had one from the Dr saying that she had the results & please call to discuss them. Then there was one from the nurse, requesting that I call to discuss his test results. Uh-oh, 2 calls w/ test results in less than 2 hours? I usually have to stalk the Dr's office for test results. I called the office during my lunch & both the Dr & the nurse were at lunch. Of course! I finally connected with the nurse after school & was told that Owen's test results were NORMAL!!! He made antibodies!! Yay! Of course, that means we still don't know what is making him sick. So, we need to go see another pediatric pneumologist for a 2nd opinion and the biopsy for cillary disfunction. Unfortunately, the first available appoinment isn't until June 18 :-( It is going to be a l-o-n-g 3.5 months! Owen is already sick again.

Hopefully we are starting to get somewhere & get some more puzzle pieces put together. Yay for streptoccus pneumoniae antibodies!!!!

Children's Museum w/ JackO

Yesterday we went to the Boston Children's Museum with Owen's best friend Jack (& his mom Jen). We all had so much fun! I don't even think the boys needed the museum, they had a blast playing in the lockers. Ahhhh...to be 3!! The boys were adorable together! I could watch them talk & play all day!!

The Snow Day that Almost Wasn't....

Today we had a snow day, even though the snow didn't start to fall till much later. We were able to get some errands done in the morning & have snow day fun in the afternoon. We made Rice Krispy treats w/ our yummy Valentine's marshmallows. Once the snow started, it came down hard & fast. Our yard looks so much prettier w/ snow.

Owen & Daddy Day

I have school on President's Day, but Owen's school is closed. So, Steve took the day off for the 2nd annual "Owen & Daddy Day". They went snowshoeing, to the park & to the SEE Science Center. Owen tried snowshoes by himself for the first time! He wanted poles (like mommy & daddy) but other than that, he loved it! And, I think he is the cutest little snowshoer ever! :-)

Our Crafty Valentine's Day

Owen & I tried to be super crafty for Valentine's Day this year :-) Some things turned out really cute & more importantly, we had fun.

Happy Valentine's Day everyone!!

Owen's "New " Jeep

Steve's boss generously gave Owen her daughter's Power Wheels Jeep several weeks ago. Owen was very excited when he saw it in the garage. It warmed up enough today that we decided to try it out. The excitement was very short lived, he was scared of it. Daddy spent most of the time pushing the jeep, Owen wouldn't use the gas pedal at all. "I don't like it, it scares me. I pushed the pedal & I went fast down there.". Oh well, we will try again in the spring!

Boston Children's Museum

We had a great time at the Boston Children's Museum on Saturday! Unfortunately, we missed the Curious George exhibit by a week, it starts on the 7th. Guess we will have to plan another trip soon!

No Pneumonia Titers :-(

Owen went back to the allergist/immunologist this week b/c he hasn't gotten any better on the new meds. In fact, he has gotten worse. He had a fever earlier in the week & his cough is even worse. She prescribed antibiotics for the cough.

We got the results of the latest bloodwork. Based on previous tests, we knew that Owen was making enough antibodies. These tests showed that he isn't making the right antibodies. Despite having received all 4 vaccines, as scheduled, he has no strep pnemonia antibodies. Fortunately, everything else was normal. He was re-vaccinated & will be re-tested in 4-6 weeks to see if he is producing the anti-bodies. We would love for this shot to be the cure, but even the Dr is skeptical.

Depending on what happens at the next appointment & what the bloodwork shows, we may also explore cillary dysfunction. This appears to be another diagnoses that would fit Owen's symptoms & history perfectly. We would need to go back to a pneumologist & have a lung or nasal biopsy to confirm or rule out cillary dyskenesia.

More Testing

We went back to the local allergist/immunologist for further testing, on the ENTs reccomendation. Owen had another baby patch SPT (skin prick test) & he tested positive for....CAT! Of all things to test positive for, the one thing we have! But, I think it is a huge victory b/c he FINALLY tested POSITIVE to SOMETHING!!! This is a big step for us! Perhaps the exposure to Boo is what has been making him sick all this time. Owen has actually had many parts of his immune system studied b/f, but there are several parts that needed to be tested to complete the work-up. Have you ever tried to take a 2.5 year old who just had a SPT to the lab for bloodwork? Not easy! We started 4 new meds to see if they can get his symptoms under control. He is now on Singulair, Symbicort, Veramyst & Zyrtec, we will see if this does the trick!

Ugh...It Didn't Work

Well, we were hopeful but it doesn't seem like the surgery was the difference Owen needed. He has continued to battle sinus infections, runny noses & a chronic, mucus filled cough.

On January 5, he had a sinus CT scan at MEEI. We weren't thrilled about more anesthia, but were praying it could give us answers. Fortuantely, the CT was "essentially normal, nothing markedly abnormal". Unfortunately, it means there isn't an obvious, clear cut reason for all of this.

The ENT suggested we go back to the allergist/immunologist for a full batch of allergy testing & an immune systems study.

A Few of my favorites

A few of my favorite pictures of Owen over the past few months. These ones always make me smile :-)

Owen Updates

Owen has had a chronic cough, chronic runny nose & countless infections since 10 months old. He has had so many doctors appointments & no real answers. The pedi's office says to check with allergy & GI. GI says it is an allergy issue, allergy says it is a GI issue. Round & round we go, with no answers & no solutions! I don't care what the issue is & I don't care who solves it. I just want it solved! I can't stand listening to him cough, choke & gag. It breaks my heart to always hear him say that he feels "not good" & is "I just coughing mommy". It is so hard to tell a 2.5 year old that he needs to stop running & playing b/c he can't breathe. There are times he can't even get a sentence out b/c he is choking on mucus. Yet, his lungs always sound clear. My baby has been coughing for 2 years, somebody needs to fix him!!!

I came home from a doctor's visit in June in tears. Everyone was blaming everyone else & nobody was getting Owen healthy! I did some research & found a program at Children's Hospital that sounded like it could help Owen. But, it wasn't exactly what he needed. I looked further & found a program through Mass General & Mass Eye & Ear that was made for Owen!! The Pediatric Airway Program was exactly what we had been looking for http://www.massgeneral.org/children/specialtiesandservices/airway_program/default.aspx
I called & they agreed that Owen was a perfect candidate. The best part was, they could get us in the next week!!

What a welcome change that first appointment was. We saw an ENT, GI, & pneumonolgist. They didn't pass the blame, they worked together & talked. We felt like there was some hope! The team decided to try several new meds & see if those could make a difference.

Unfortunatley, the meds didn't work nearly as well as we hoped. In September, Owen had a triple scope & his adnoids were removed. During the surgery, a lot of fluid was removed from his lungs (not that you would know when he woke up, he still sounded awful). His lungs reacted several times while under anesthesia, which is apparently not normal for asthma. His O2 remained low after the surgery, so we stayed overnight. The doctor suggested that Owen might benefit from chest PT to help get all the junk out of his lungs.

His adnoids were very inflammed & infected. The scopes showed a lot of chronic inflammation & chronic infections (he was sent home on antibiotics). The fluid in his lungs tested positive for 3 kinds of bacteria found in sinus infections. There was some inflammation in his stomach, mild gastritis. But, everything else GI related was perfect! It sounded like removing the adnoids was just what he needed.