April, out like a Lion; May, in like a lamb...

...Or so we HOPE!!

I have to apologize for my last blog, I just re-read my madness and I'm going to blame the emotions for not being grammatical throughout the entire post!

I did notice that I promised my next post would be less dramatic and more uplifting, so here goes!

Since the last blog Darcy has been doing much better, which means the medicine is working once again.  Darcy had her EEG (4/19), which was amazingly fun for all (NOT).

 

 

Once the EEG was over she actually had an appointment already scheduled with her Neurologist so we zipped over to that, and of course Eric and I left with more questions and thoughts.  We were able to discuss some things but then a lot of this is trial and error, which being a parent to the patient is not fun at all.  You really just want it to be something that is in stone and will never change but obviously we have seen first hand that is never the case. 

 

Today (4/29) was another exciting day for this little nugget!  She got her foot braces!!

 

 

Aren't they the cutest!?  These bad girls are going to give her the support she needs to feel confident enough to stand and walk on her own... fingers crossed!  They didn't seem to bother her once they were on, but you could tell she wasn't sure how to maneuver with them walking.  She will get it!

Darcy also had her 18 month check-up, that's right she is already a year and a half!!  Where in the world have the months gone?  Her doctor is the best, seriously I'm sure everyone thinks that but every time we leave him we feel positive and uplifted.  He doesn't really say much, but he is so optimistic about her future and just loves both our girls so much.  When we see her Neurologist he is all about science and brains and stuff that is way over my head and I never leave as hopeful. Eric is always telling me that it is their job not to give us too much positivity because then if it doesn't happen then we blame them.  I get it, I so totally would blame them... who else would I blame... duh!

At the end of the day, our little girl is growing right on track and is very healthy!  We talked briefly on her diet and maybe trying to do a meal plan that would be beneficial for her and her seizures.  I'm excited to try this, if this is something I can do for her, then you are darn right I will be doing it!

 

The girls at their Dr appointment, they were both super excited that NO shots were given today!  We had thought Ruby would have to get her Chickenpox shot because school said she needed it before she could start, but since she was diagnosed with the chickenpox virus at 6 months the Doctor didn't feel like it was necessary so he wrote a note to the school district and explained everything.  Fingers crossed for that girl they except it and we don't have to go back for it after all!

 

 

Now, I feel bad that Ruby didn't get any BLOG time last entry so this girl is about to BLOW up the BLOG screen!!!

To start off, she is growing up way too fast! I know everyone says that basically everyday of their child's life but seriously there are days I feel like I'm talking to a girlfriend! (not ready for that, maybe in 20 years)

 

KINDERGARTEN!!!

 

Yep, that's right...I typed it!!  I'm having a hard time wrapping my head around this... why is it so hard to come to terms with this?  I mean it's not like I'm leaving her for the first time, she's been in daycare since she was 10 weeks old!  I'm just afraid that this is just another slide that is going to take me thru her childhood way too fast!  I mean KINDERGARTEN!!  Ok, so we had her Preview day just Thursday (4/28) and I held it together for the most part... only had to look up at the ceiling twice!

It was so awesome to go thru the school with her, to see all the stuff she is seeing for the first time and then we did lunch there as she would be doing.  Now that made it real.  I mean how is she supposed to do all that by herself?  It blows my mind how fast she will grow up from now to the end of May, as she will start the Summer School program then... so basically becomes a Kindergartener before really becoming a Kindergartener. 

Eric and I were really taking this whole Preview day in.  The two of us asking questions, Eric taking notes (still not sure what those said), and then giggling at the now Kindergarteners as they came in for lunch and were calling Ruby's class the babies! Now that was pretty funny. :)

 

 

Please look past my puffy cheek, Daddy thought taking a picture right when I took a bite was a good idea but Ruby looks adorable!

 

Not only is Ruby preparing for Kindergarten but she is also tearing up the YMCA pool with swimming lessons ever Saturday and then following that up with Soccer games!  She is definitely a Star on the soccer field.  I wish I had some photos or footage of her soccer skills, but trying to cheer and control a 1.5yo doesn't leave much time for photo shoots!  She has two games left, so my goal will be to get at least one GREAT action shot!  Eric has been the soccer coach this year, and probably the only year! (apparently his wife signed him up :-/)...but Ruby loves it and the other parents do too.  One even asked to be on his team again next year... so maybe his wife SHOULD sign him up again!

 

So, we will raise a glass to all the FUN and ADVENTURE we had in April and look forward to the CRAZINESS May has in store for us.

 

Xo
Breanne





Calling All Prayer Warriors

I can say that I'm not one that usually feels weak or defeated but lately I'm feeling both.  I'm close to a mental breakdown and can say that I've ever felt like this...oh wait!  I have!! Right after my first child... oh how quickly you forget those days.

We have had a couple of months with Darcy that have kept us on our toes.
Lets go way back... well February, but that seems like an eternity a go.

February, we made a lovely trip to the ER.  This particular weekend was a busy one, as we had company in town and all these plans to have a fun and light weekend, that is until Darcy's little seizures wanted to play too!  This weekend she had her longest seizure we had ever experienced...17 minutes!  Talk about the longest 17 minutes of our lives.  Seizures suck! Point Blank!  You and the victim are helpless and at the mercy of them... and they are wicked!
So, we went to the ER and had Darcy checked out.  The checkout for Darcy is your normal CT, X-ray, and IV (in the forehead of all places).  Everything checked out as far as her shunt, so luckily that was not causing her seizures, and really the only explanation we get at that point is that her low-grade fever sparked them and with her having a seizure it then decreases the effect of medicine.  So, there we are just increasing medicine again! 

Then we can just flash forward to March, because it wouldn't be a normal month if we didn't make a trip to the ER again!!  This time Ms. Darcy May was showing all signs that her shunt could possible be malfunctioning...vomiting for no reason (which to me means no fever or signs of flu), abnormally fussy (which for her is rare b/c she usually is pretty happy), and more tired than normal.  So we of course don't want to wait it out, so we head to the ER.  She again goes thru her normal routine steps of getting checked out.  Luckily this time they didn't IV her, that last one was a dozy and there was a lot of tears shed by baby and Mommy!  But again (and luckily) everything checked out great and it was just what we can guess as a stomach bug.

Now, here we are in April.  This is a Mother's breaking point, when you can't go a month without something happening to your baby and something that you have no control over!!
It all started two weeks ago, when we  noticed that she woke up with no movement on her left side (so arm and leg were not moving or carrying any weight at all).  The only was that she slept on that side wrong, b/c we didn't see anything that would have us think otherwise.  It took some time for the paralysis to wear off but it did and her day was normal, shoot even a week went by with everything being normal.  Then a cold hit Darcy (snot everywhere!) and a couple teeth decided they wanted to pop thru too.  JOY!  But for Darcy these little but not so pleasant hiccups multiply in her tiny head and cause more stress which then are trigger points for her seizures, so naturally she would start having them.  These particular seizures weren't like ones we have experienced with her before, and trust us she has been having these since she was three months old and about every ugly kind has shown their face at least once.  Which brings us to this week (my nemesis), she's had now a handful of episodes this week and tonight was another long (which leads to me to my breaking point).  I've been keeping her Neurologist up to date on everything, and he has ordered lab work to look at her drug levels now, an addition of medication to her existing meds and then an EEG (which will be next week).  Darcy is definitely the strongest most determined little nugget, and though I may be breaking she is still so strong and showing me that we don't quit! 

So, now you can get a quick run down of why I'm reaching out for Prayer Warriors!  Our little girl will get thru this, she always does but it definitely doesn't go without set backs and a lot of trial and errors from everyone on board.  I wish there was so much more we could do but like I said previously we are at the mercy of these UGLY, WICKED seizures!! 

I promise that my next post will be uplifting.  On a positive note:  Darcy was fitted for braces for her feet, and will be getting those at the beginning of May.  She will be wearing these on a daily basis to give her support as she is learning (and wanting) to walk!  They are the cutest little braces, Big Sister even picked out the pattern and strap colors so she will be stylin'. 

XO
Breanne