About fucking time!!!!

Mom- I am sorry if you read the title of this post and are uttering my name in the mom voice while shaking your head. I will say that if things had gone differently today, the title of this post would have been either one profanity or a long string of them.

For those of you who may not know why the first blog entry's title would have been a long sting of profanities had the day been different, let me recap the last few years:


May 2009- Josie turns one. Shortly after her 1st birthday she lands herself in the ER with bilateral pneumonia. Given meds and a clean bill of health a week later.

June 2009- Josie's back in the ER with another round of bilateral pneumonia. A referral to a pulmonologist is submitted.

July 2009- Cystic Fibrosis is ruled out. Swallow study is ordered. Josie failed the swallow study and diagnosed with Dysphagia.

October 2009- Josie taken to hospital by ambulance because of bilateral pneumonia. 

December 2009- Follow up swallow study shows more micro-aspirations, thicker liquids ordered.

January 2010- At the request of the speech pathologist, an appointment to watch Josie eat is set up. During the meeting the speech pathologist notices that Hailey is showing signs of aspiration and recommends swallow study.

February 2010- Teague is born. At the 2 week and 4 week check up, wet breathing was discussed. Ped said it was normal.


April 2010- Hailey has first swallow study and fails and diagnosed with Dysphagia.

May 2010- It is no longer called Dysphagia in our home, it is now jokingly called sucking at swallowing. 

June 2010- Teague has his first swallow study and passes with a 20% penetration rate. He was 1 swallow away from failing. Josie has another swallow study and is no longer allowed to drink from a normal cup.

September 2010- Meet with ENT.  Suggests laryngeal cleft surgery.

October 2010- Josie undergoes plumping of the back of her throat.

November 2010- Swallow studies finds the plumping is not effective.

December 2010- Josie begins struggling with foods. Heavily modified diet put in place.

February 2011- Fight like hell to get Teague another swallow study.

March 2011- Ped returns after 9 months of being away. His first appointment back in the office is spent reading our file with his second appointment being me saying I want a referral to 4 very specific doctors. After a brief discussion about how it would be easier on both of us if he gives us all four at once, we get all of our referrals. Let the appointment making party begin!

April 2011- Teague fails swallow study with a 46% penetration rate. Josie fails swallow study with fibrous foods (no intact meats). Josie meets with new Pulmonolgist and ENT which suggest repeat laryngeal cleft surgery along with lung irrigation.

May 2011- Josie undergoes Laryngeal cleft surgery- very minor cleft is found. Meet with geneticist. No ideas, but asked to come back in 6 months.

July 2011- Josie has repeat swallow study. She is allowed on thinner liquids, but still struggling with foods. Meet with Neurology. EMG and nerve conduction study recommended.

August 2011- Teague falls while carrying a ceramic mug and cuts open his hand. (The importance of this will make more sense in a minute)

I left out most ER trips and illnesses as it is ridiculously late right now and you can only write "bilateral pneumonia" so many times before the letters and words start to look odd.

Which brings us to current day and I am sure you can see where the "About Fucking Time!!!!" comes into play. Today Josie had her EMG/nerve conduction study done. I have to say, she is a trooper and handles everything like a champ. The tests came back abnormal. Which is somewhat a blessing. The test shows that her muscles get fatigued after a minute of stimulation similar to exercise to the point where they fail to work. This is most likely the reason that the kids are always falling, not just because they are clumsy. If you knew their parents, you would not be surprised if they were just clumsy. My dad called me Fall-Down-A-Lot Bear as a child and the hubby has a nice scar on his head from managing to hit it on some doohickey on the sub. Anyway, back to today. This muscle fatigability can also cause a person to suck at swallowing. We still don't have a definite diagnosis, but we are getting closer. I should hear back from the Neurologist tomorrow (which is rapidly becoming today) and we will go over what comes next. I am hoping this next phase goes much more quickly and smoothly than the beginning phase.