Wayyyy behind

I really want to apologize for getting so behind on Lauren's posts...  Yes, I have been a little busy doing things, but honestly, I wasn't quite in the mood or place to write.  That sounds terribly awful, but I would think about it all the time and just would not be able to follow through.  Though the last few days I have felt better and much more motivated to get things back on track!  YAY!!!

So, lets hope that things continue to flow and that I am able to share the joys and such with all her followers!

Halloween

Halloween was so great with all the girls together. 

Costume idea began with Taylor wanting to be a peacock, then her sister wanting to be one too, so we just HAD to make Lauren a baby peacock.

Peyton

Taylor

Aunt Gina and Nanny

Shunt Progress

OK, so Lauren is notorious for shunt problems.   This is how her summer went...

Shunt malfunctions:

June 26 - repaired with surgery

July 9- TPA

July 22- TPA

August 11- TPA

sooo when her shunt malfunctioned AGAIN on September 6th, the surgeon and I decided that it was time to try the abdomen again.  So, on September 7th (6 months old)  Lauren had her shunt placed back into her abdomen with no problems.

AND guess what?????

It worked!!!!!  8 weeks later and I can tell you she has been malfunction and infection free!!!!  We are so thrilled for her progress and look forward to many many more weeks, months, and years of things going well for her!

Feet

Lauren's feet have made sooo much progress.

Before: Her right foot is definitely clubbed.  Her left foot is inverted. 

and now they look soooo much better.  I don't have a picture because of the casts on them, but when we go to change them I get to take a peak.  I'll post some soon though next time I go.

Through xrays and exams Lauern has a vertical talis  (spelling?) in her left foot.  Which means that a bone on the bottom of her foot grows in a downward motion rather than flat.  To fix this they will straighten and pin the bone in place through surgery.

The plan right now is to go to surgery on Feb. 13 to have the tendon release surgery on her right foot, and have the left foot bone repaired.  At the same time she will have urology go in and do their exams of her anatomy.  This saves Lauren from an additional trip to the O.R.

In the meantime, her feet have been casted, changed weekly.  On Friday the 18th Lauren will be placed in her A.F.O.s instead of casts.  This pleases me VERY much.  It's difficult to make much progress with her legs and feet casted AND I am looking forward to Lauren's comfort being increased.  Regardless of feeling...it's gotta be awful to have casts on. 

Urology

I went in September to discuss Lauren's internal anatomy in relation to the fistulas that she has internally between her rectum, vaginal and urinary tracts.  This is not too uncommon to have one fistula with children who are born with an imperforate anus.  But Lauren has 2 or 3, which is highly unusual. 

 So, the plan is to put Lauren under (anesthesia) and take a camera to explore her anatomy more closely.  This will help them and the general surgeon to make a better treatment plan for her.

It still looks as if her colostomy will remain permanent.  Her colon is located rather high and they aren't sure once they make the repairs to the tracts making each one separate, if they will be able to make one for her rectum.

It still saddens me, but I am able to be more positive now that I have had time to deal with things.  It's definitely better to have that than her have to wear diapers...  But who knows what they will be able to do in 10-15 years from now medically speaking.

I also learned more about the bladder functioning.  It does two things: Holds urine and releases urine.  Now, we know that Lauren is able to release her urine, which has been wonderful since we haven't had to catheter her...  BUT what we have been noticing is that Lauren leaks ALL the time, meaning her urine comes frequently, which probably means that her bladder can not hold urine.

This presents a whole new problem.  The urologists assured me that they would do everything they can to make sure that when Lauren starts school, we will have her urinary issues under control.  Something will have to be done to fix this, but at the time it is going to be addressed later.

Spina Bifida Clinic

Lauren had her SB Clinic in late August.  It was a good experience overall.  I wasn't sure what to expect.   

They checked her in and measures her head circumference, weight, height, and blood pressure.  She then went into a room, where we stayed for the remainder of our visit.  This made it so convenient.  I don't know why, but I imagined us moving to different offices to each doctor.

She saw Nephrology for her kidney and high blood pressure.  The hydranephrosis (swollen kidney) was clean and clear and was looking great.  Doctor is hoping that she will grow out of her blood pressure problems, but she will continue to take her medicine for it and will continue with check ups.  

Her Neurosurgery doctor was glad that at the moment Lauren was doing well, but was concerned with her recent and frequent shunt malfunctions.  He said that if they continued, they would probably have to consider performing another shunt revision...

Ortho doctor was pleased with the progress she was making with her clubbed foot and the left foot as well.  She will continue with serial casting.

Urology said that he would perform a urodynamics test around a year old.  This test will tell them how her bladder is functioning.  Right now, her plan is working and emptying on its own.

I spoke with a nutritionist briefly...

We did get an opportunity to visit with two of her nurses from the parinatology office before Lauren was born.  They really enjoyed getting to see her and it was nice to visit.