Capture Your Grief Day 4

Capture your grief day 4: What kind of loss(Es) do you have? What were the statistics of those losses?

I've been pregnant 3 times, yet I have only 1 out of 4 children living.

*My first pregnancy, I lost twins a few weeks apart. I later found out that it was most likely vanishing twin. This occurs in 21-30% of multi fetal pregnancies.  (Read more here)

*Miscarriage occurs 1 in 4 woman. 

Lanie was born a healthy rainbow baby. Then there was Liam and my pregnancy with Liam. Sometime during pregnancy my uterus ruptured (we're guessing it occurred at the end of March/beginning of April judging by when the pain and contractions started).

*uterine rupture occurs 1 in 1,146 (.07%)

*CDH occurs 1 in every 2500 births. 

*bilateral CDH is extremely rare occurring in less than 1% of CDH cases. Most die in utero, leaving only 35% to survive pregnancy. 

*50% of babies born with CDH do not survive. 

The doctors gave Liam a 0% chance at surviving NICU. They didn't think they'd get him stable for surgery. Yet Liam survived and left NICU at a mere 48 days. I say "mere" because the majority of CDH babies stay in the hospital anywhere from a few months to even years. Liam was also born with a partial biotinidase deficiency. This meant his odds of being failure to thrive increased exponentially. Not only did CDH create a higher risk of SIDS but his partial biotinidase deficiency increased those odds. Read more about biotinidase deficiency symptoms here.

*One in 109,921 for partial biotinidase deficiency.

 (Read more here)

*Pulmonary Embolism occurs .43-4.7% in children. 

(Read more here)

(Picture is of Liam sleeping soundly in my arms on 10/04/2011. We were at UCSF for a NG feding tube.)

Wear Your Jeans Day

Today is #rarediseaseday Wear your jeans in support of everyone with a rare disease. Liam has two: CDH and Biotinidase Deficiency. #cdhawareness 

Potty Dance

I never thought that at the age of 3 my son would still be in diapers. 

My daughter started potty training at the age of 1 1/2 and was fully potty trained by age 2. 

Obviously we couldn't start potty training Liam at the age of 1 1/2 because, for starters, he didn't walk until right before his 2nd birthday. He hasn't been able to communicate with us verbally until recently. We tried once before, this last spring, to potty train but Liam didn't understand it. 

Now it's clicked in his head what the potty is and what your supposed to do with it. 

Yesterday I happened to be in the bathroom using the potty (TMI) when Liam walked in. He asked me what I was doing so I told him. I saw this look in his eyes like something clicking together and so I asked him if he would like to use the potty. 

Liam got so excited. He clapped his hands and said "yay potty". And sure enough he used the potty! 

This was yesterday evening, right before his shower. After his shower I asked him if he'd like to use the potty again. And again he was excited. He had used the potty successfully twice before bedtime. 

Today I've kept asking him if he had to use the potty. He successfully used the potty 5 times before 1:30pm. One of those times he even went #2. (Again I know TMI)

Liam was rewarded with plenty of cheers and high fives. This last time he didn't want to stop playing but did without a fight and was rewarded with a sticker. Boy does he love his stickers. 

Today hasn't been accident free, and I didn't expect it to be. I also don't expect any of the days to follow to be accident free. In fact, he's still wearing diapers because he isn't going 100% in the toilet. In fact we've still had several full diapers. 

I feel like starting potty training and immediately changing him into undies would be too big of a change that he just can't handle or process right now. The last time I tried to potty train Liam I immediately put him in undies and that resulted in both of us being frustrated. Today hasn't been frustrating in the least. 

We've been celebrating his accomplishments in using the potty and I think that's going to be our key to success. Just letting him do it on his own time, but reminding him to go. I'm very proud of him and how well he's been doing so far. I don't expect this to be smooth sailing. What I do expect is many accidents and weeks of failing until he gets it down. My expectations aren't high, they're reasonable and reachable.