Clinic

Lauren attended spina bifida clinic in Nashville today.  Overall, we received a good report and some interesting tidbits...

She began the morning with an ultrasound on her reproductive organs...which we received results when we met with uro later that day.  Remember when I mentioned that Lauren has 2 vaginas?  Well, it appears she has a double reproductive system, which means she has two uteri (uterus)...

The doctor said that it's actually not that uncommon to have this anomaly.  Right now, it's not causing any problems, so "don't touch it if it doesn't need to be fixed yet"...  In a year or two when we find out more about her urinary issues, we will discuss future plans.  

Overall, she is a hot mess inside, but nothing that can't be adapted or mended.  Honestly, I'm not too worried about it now.  We have a really good idea of what's going on and are keeping an eye on things.  The doctor said if her kidneys are growing correctly and bladder is doing it's job, then we're in good shape for now.  The next time we see uro we will get a renal (kidney) ultrasound.

Next up was nutrition.  Lauren has been vomiting her milk, typically the last one of the day about 5-6 times per week for past 6 months.  She also has a very strong gag reflex, which has been stopping her from moving on to snacks like the puffs and yogurt bites...  Even cut up into small pieces she gets gagged up and usually will throw up.  So, it's been a bit frustrating, but from reading around it seems pretty typical for children with Chiari II to have sensitive gag reflexes...  the nutritionist just really wants to make sure that Lauren gains the adequate amount of weight and receives the proper nutrition.  So, she will be referred to someone to perform a feeding evaluation.  She can then receive a type of oral therapy to help her with her feeding.  This pleases me and calms my mind more than you know.  

Last was a visit with her neuro surgeon.  It has been a "quiet" 6 months neuro wise for Lauren, so we are very pleased with her progress.  I remember a time when I prayed for this type of serenity with her shunt and thought I would never see a day like these.  We are very blessed that her shunt has been working so well.  We talked a little about other things, including her eyes and her sacrum.

Lauren's left eye wanders A LOT.  Typically to the inside.  I wasn't sure if this was caused by hydrocephalus or more a muscle thing.  It's not the hydro, so I will get a referral from my pediatrician to the pediatric eye team at Vandy.  I'm also relieved that we can get on top of this and try and make progress before it gets too bad...

The sacrum are the last 5 vertebrate in the spine.  As we grow, they begin to fuse together into a triangle shaped bone between our pelvis bones.  When Lauren was being created, a large part of her sacrum wasn't made.  Which, means that she is missing most of this bone.  When I did a little research online I found that when this happens its not uncommon for the child to have an imperforate anus...  Ahaa!  

Anyway, for the time being it's not an issue.  When she gets older and larger, and begins to bear more weight onto her lower half, we may have some obstacles since her pelvis doesn't have the support of her sacrum.  This means that if she becomes mobile with crutches, walker, braces... she may be even more limited and will have to rely more heavily on a wheelchair.  Which actually doesn't really bother me.  We expected from diagnosis that this would be her life and that's a part of who she is and we love EVERY part of her. 

We did not visit ortho as a usual sb clinic goes because she will see him in two weeks to check out her feet and possibly get her new AFOs.

Anyway, all went well.  I got some very helpful information and felt at ease with things as they are.  I trust that with intuition, prayers, and staying on top of things, all will fall into place.  

Lauren was also a fabulous baby today!  

Love to all:)

Lauren Turns One

Our Lauren turned one yesterday.  I could not have been more excited to see her celebrate the day.  It's hard to imagine what has all happened in only one year.  This was certainly a year marked by triumph!  A year when my medical vocabulary exploded.  A year when two older sisters accepted and captured a baby into their hearts.  A year when a baby became wrapped around her daddy's fingers.  A year when love transcended all.

I'll never forget the moment we first saw each other.  She was crying and when Lauren was brought to my side, I placed my hand under her back and said hello and began... She immediately stopped crying... and I immediately fell harder than I thought possible for a beautiful sweet baby girl.  I still continue to be overwhelmed by my love for her.

During this year I realized the power of prayer and patience.  Through obstacles some small, others larger-the Lord proved to us His will through Lauren's determination towards healing.  I will forever be grateful to the family and friends that stepped forward to show support in every way imaginable.  Whenever someone approaches and tells me that they prayed for Lauren I am usually moved to tears.  A selfless and simple act impacted our lives in ways that I'll never be able to express.

Thank you also to her hospital family (Jennifer, Karie, Kaitlin, Lita...) for their amazing efforts and dedication to their jobs.

 

 Lauren spent the day with her family.  We played lots and celebrated the end with a cupcake, which Lauren didn't care for...  We're looking forward to another year, but this time with less obstacles...

Recovery Update and Random Thoughts

Lauren has been recovering beautifully since her surgery last Monday.  The only hiccup we had was a fever for two days following surgery.  Her fever never went too high and didn't last too long.  I still called surgeon's office and visited my local pediatrician.  

We have just been trying to be careful to position her feet and legs comfortably and trying to be as gentle with her as possible when moving her around.  

We will go back to ortho on the 28th to get a new set of casts, then 4 weeks later another set, then four weeks later they should be off for good if all is well!

On another side note....
 
I really wanted to explain that in previous posts, sometimes I may come off as being sad about some of the things that Lauren has to endure...  I am to an extent worried or sad about what obstacles-social and emotional-that she will encounter throughout her life because of these things.  But, very importantly, I accepted Lauren's spina bifida the day she was diagnosed in utero.  I knew without a shadow of a doubt that my daughter, differently abled or not, was exactly what God intended for me to have.  

Lauren has blessed me in so many ways, that one day I am going to have to thank her for making me a better woman and mother.  I just really wanted to stress that when I vent or deliver posts regarding procedures, disabilities, or abnormalities that she has, I am comfortable with these things.  I accept these differences and would take a thousand more if it meant keeping Lauren with me here on earth.  

I know that this post is a bit random, but after reading back on a post or two and some comments I began to fear that I was coming off as "complaining"... which couldn't be further from the truth.  I hope that everyone understands that complaining is certainly and never will be my intent.  I am truly blessed and am thankful daily for my wonderful family.  I am also blessed to have such a wonderful community of supporters and followers of Lauren.  And thanks for listening to me ramble... 

Surgery Update

Lauren went into surgery at 7:20 this morning and came out at 11:45.  

My sleepy bear...

 She is responding really well!  Hasn't cried one time and does not appear to be in any pain from her feet.  Which is a good and bad thing.  I don't want her to be in pain, but if she was it means that she could feel her feet.  I suspected that she wouldn't be able to feel, but I was hoping:)  

They ended up releasing and correcting tendons and bones.  She has stitches and temporary pins coming out of each foot.  They are wrapped well within her hot pink casts.  We're just checking for swelling...  Over the next few weeks we need to be watching for any signs of infection or blistering... Which is hard with casts on and without her being able to tell us.  

So fever and or consistent irritability is key.   Plan is to take these casts off and the pins out in 6 weeks, then make molds for new AFO's, then recast for 4 more weeks.  This doesn't seem so bad. 

Her casts before the sisters get a hold of a marker and finger nail polish;)

As far as urology is concerned, they decided that her defect was rather high, which can make things a bit more difficult to fix.  As discussed in the past, we're still thinking that her colostomy will be permanent, therefore allowing less surgical work for her rectal tract later on.

At this point, which it could change, we believe that she has little to no bladder control.  Which means that once the urine is made, it doesn't hang out in bladder and come out in bulk-it just comes out once it's made (her bladder doesn't hold the urine).  If this is the case, less surgical work to urinary tract will be needed as well.  She would use a catheter through her abdomen straight into her bladder to urinate.  This would obviously be a surgical procedure and this too would be a permanent solution for urinating.  

All this being said, it may turn out that they will just have to close off each of the fistulas (or bridges) between each tract and just really focus on the vaginal one.  During today's procedure they discovered that she has two vaginas (yes, you read it correctly), which apparently is common with a urogenital sinus defect.  So, when they work on these things, they would correct her vagina as well giving her just one.

You know, right now her defects aren't presenting any problems and if this is the case she probably won't have these surgeries for another year.  They want her to be larger and when she's about 2 (when typical children begin to potty train)  would be a good time to address these issues.

I'll be following urology in SB clinic still and we'll stay on top of and monitor things, but for time being this is the plan.

Thank you all who have followed and prayed right along side of us during her journey.  I am incredibly blessed to know such wonderful people!  

Love,

McGinnis Family

A new year and lots of catching up

A fresh new year, brand new start, and a year full of good times ahead! 

We brought in the new year with my family-Travis, Christine, and Ashley.  The girls tooted in the New Year with fireworks and noise makers, running wild around the yard, all the while our New Year princess Lauren rested.

Cousin Ashley and Uncle Travis with Taylor and Peyton

Princess Lauren

 We recently went to Lauren's pre-op appt with ortho.  We talked about plans for her upcoming surgery next Monday.  On the right foot, he will release and stretch some tendons.  On the left, tendon work will be completed as well-not as much though as right.  Also, on left she will have a bone (vertical talus) corrected and pinned.  Both feet will be casted for a while.

We will check in at 6:00am Monday February 13th for a 7:15 surgery.  Lauren will stay one night and if all goes well will be discharged Tuesday.  Which is good cause we don't want to spend Valentine's Day in a hospital all day:(  

The urologist will perform a cystoscopy (a camera) of her urinary tract.  Lauren has a urogenital sinus cavity.  For a girl, there should be 3 separate tracts-vaginal, urinary, and rectal.  Lauren's are all connected as one.  So the first step is to evaluate the defect-figure out if it's high or low, then use the camera footage to come up with a plan to fix.  Further surgery will be required at a later date...

Overall, I dread going back to the hospital, having Lauren go back to surgery.  In fact something strange and unexpected happened to me a couple of weeks ago.  I was grabbing my mother form a procedure in an outpatient surgical facility and while I was waiting the monitor of the patient next to my mom began to beep with her heart rate.  That noise gave me chills.  I immediately felt extremely nauseous and a pit of anxiety rested in my chest.  It was a flood of not so great memories.  I had no idea the amount of anxiety that has been resting quietly inside of me.  In fact I have never had blood pressure problems until Lauren was born.  It's still very high, but I have been working at trying to deal with it, rather than keeping it all pinned up.  I want to be healthy, so that I can give my best to each of my girls.

Lauren currently is being treated for a UTI/kidney infection.  But is showing no discomfort and is doing wonderfully.

She began to say "mama" and "baba" at the beginning of the year.  She doesn't say them often right now, but she is still learning a lot of things right now.  She is doing well in each of her therapies.  A university nearby engineering dept is making a crawler for Lauren.  I'm really excited about it.  It will help and aid her in the crawling motions...  Should get it in about 4-5 months.

 Another recent development is that Lauren is becoming a serious daddy's girl.  She has got him so wrapped around her finger.  It's very sweet to see.  Her favorite thing to do is to have Tracy take her hands and plant her feet on the floor and to dance her around.

 Well, we'll be in touch after the surgery t let you know how things went.  Thanks again for following and keeping up!

 Love from the McGinnis Fmaily!

A Snapshot

Lauren is still doing wonderfully.  Sitting tall, trying to roll over (at least mommy standing by waiting...).  She is still doing her regular therapies and each is seeing progress. 

Thanksgiving

We had a wonderful Thanksgiving, blessed with health and family.  I have much to be thankful for this year...