Monday, September 30, 2013

Last Day!!!!!

Tomorrow is the last day for the impact statements. I appreciate those who have sent me theirs already!

Please help us make an impact!!!

Here is the link to the video I put together when I put the call out for this project.

See my August 28th blog post as well. 

Shaniperk@gmail.com is where you can send the statements. Thank you!!!!

Link to the video

Wednesday, September 25, 2013

Mylah Update!

Today we went to yet another vent clinic appointment to see how Mylah is progressing.
The team felt that Mylah was doing very well so they implemented another vent wean.

Mylah is now able to nap on pressure support from the vent. The breaths from the vent will be turned off.  If she does well for 2 weeks, we can then allow her to nap fully without any support from the vent!  If she is able to tolerate the latter wean, then we will get another wean from the vent team via phone(we won't have to wait for our next appt. in 3 months)

This is EXCITING news!!!!! I am so happy with her progress.  Things are definitely moving in the right direction.  We are getting closer and closer to no vent and it's so funny because although I'm very happy, it's a scary feeling at the same time, but the team has agreed that we will just gradually move forward. Not too fast so that Mylah and us are able to adjust.

We started the coconut oil therapy a few weeks ago and I have already noticed changes in her behavior. She is using her voice a lot more; especially at 2am. She is VERY loud and vocal about something we just haven't had a chance to figure out what her demands are LOL.
She is also trying to roll over but gets stuck before she can fully roll.

Mylah has been doing very well. We are having issues with constipation due to a new formula, but we are working through natural ways to combat it.

She also turned 18 months yesterday! On the 24th of each month I just take time to reflect on our journey. I look at pictures, read my old blog posts, and I listen to old voice memos that I have of various encounters we've had with doctors regarding Mylah's health. I'm always brought to tears looking back on the memories of our journey.  It humbles me tremendously and reminds me of where we have come from. I know that we are truly blessed by GODs grace and mercy.


We are also still working on the project for Mylahs Impact Book. This is the collection of stories, pictures and statements that we will take back to the hospital where Mylah was born. We are praying that this book will move the hospital to change their protocol in dealing with Trisomy 18 children.  We have witnessed firsthand what prayer, faith, love, and hope can do.  We are praying, hoping, and remaining faithful that we can make a difference in the hospital policy.

If you wish to participate, please send your statement on how Mylah's journey has affected your life and based on what the hospital told us, how would you like to see the policies changed.

The statements can be sent to Shaniperk@gmail.com by October 1st. I have received 5 so far so I would like to say "Thank You" to the people who have taken the time to write these and send them to me.

Finally, in talking to a friend about the impact project she mentioned that she no longer reads the blog because she thought Mylah was "okay". I would like people to know that this blog serves as my public diary. My thoughts and feelings I share with all who follow this journey with us. School, Work, and LIFE keeps me from blogging as much as I did before, but this blog is still very much active. We still have more great news, milestones, and birthdays to celebrate so please don't leave us!