Face of hope

Face of hope
Courtesy: TIffany Kay Photography

Wednesday, February 27, 2013

Crunch Time ... GI woes and Oh So Close to Sitting....

It has been quite a busy weekend for us at the Gareau household!  To start out the weekend, my older two daughters had their first Feis (Irish Dance competition)! They were able to compete for the first time, and had a blast! It was a very exciting weekend and to make it better, Nana and Pop Pop, two Aunts and several cousins came down to visit which made it all the more exciting.  Reilly and Kaitlin did well, especially for being Beginners.  They earned a few 1st, 2nd and 3rd place medals between the two of them (as did their cousins) and had a great time competing in their dances.  The weekend continued with family visits and dinners, Mass, and then the last game of their basketball season.  I was happy the girls had a great weekend...it was tiring and non-stop movement, but wonderful and fulfilling.  It was a great way to round out the end of February.  Of course as Monday approached, it was back to our usual busy schedule with school, homework, dance class, household chores, and all Meagan's obligations with appointments and therapies.

My older two girls after their Feis (the brunette and strawberry blonde in the black dresses) along with their cousins (some Irish dancers as well and some here to cheer them on).  

Reilly, Kaitlin and Anna getting their end of season trophies for Basketball

I recently mentioned Meagan being referred back to her GI doctor.  As much as our Pediatrician was on top of Meagan's weight and feeding issues, we had reached the point this past month where she felt her monitoring was not enough.  Dr. B felt that at that point since we hadn't seen much weight gain from Meagan, it was time to go back to GI and see what they felt was a reasonable plan.

This should have been no problem, as Meagan is already a patient at the GI practice.  We have seen them since she was in the NICU through this last year before we started feeding therapy.  However this time, we wanted to see a different doctor.  Same practice, but, different doctor.  While Dr. P was very nice, we felt medically, he was not a good match for us at this time.  In the past he has sent us home with appetite stimulants and recommendations for high calorie formula.  While these were reasonable steps to try and increase Meagan's calorie intake he never scheduled a follow up appointment.  No weight checks.  No date set when we would re-evaluate Meagan's condition.   When asked, he said it wasn't necessary...which totally confused me.  Here he had a brain kid who was losing and plateauing on weight gain, who liked food but wasn't able to take in the volume she needed, and who after 8 months of feeding therapy saw no great increase in her eating or weight....yet a follow up wasn't necessary? It just didn't sit right with me.  I needed a more pro-active doctor.  Someone who may have started with the same plan of the stimulants and therapy, but was more willing to sit down and make a long term nutrition plan for Meagan so we had goals and knew what to expect this year.  When I called to make the appointment, I got a bit of a surprise....switching doctors was going to be quite the challenge.

In the past, we have switched doctors in almost every practice Meagan sees - from her Pediatric practice to Neurology...it is never an issue to schedule appointments with different physicians or even nurse practitioners based on who has openings in their schedules, or with whom we feel most comfortable dealing with Meagan.  Not so at the GI practice.  In order to see another doctor (one who has come highly recommended to us by our Pediatrician, two other Hydro families, and another family we know who has a non-Hydro child with GI issues), it has proven quite the process.  We had to fill out an application and then an over the phone form with an operator at the practice.  They then send the form and application on to the Operations Manager at the GI practice.  They get 10 business days to "review" our reasons for switching doctors.  If approved, the form then travels back to our original doctor at the practice who gets 10 more business days to officially sign off Meagan to the new doctor... or he could not sign, meaning we are stuck back at square one.  This could also happen if the Operations Manager does not approve of us seeing a different doctor.  Sounds crazy right? Well, it is in my opinion.  There are no insurance or schedule discrepancies... therefore, I should be able to have my daughter seen by the doctor of my choice.  I could not believe the hoops we had to jump through to see a different doctor...in the same practice....especially when she is already a patient at the practice!

It has been 10 business days and of course, there has been no return phone call.  So being the squeaky wheel I can be when necessary, I called them to check on the status of our "application."  After 26 minutes on hold, the receptionist finally took my information and told me I needed to be put through to the Operations Manager.  "Great!" I thought.  Just the person I want to talk to .... after several more minutes, she picked up.  I once again gave the information and birth date to the Operations Manager.  The response was "Hmmmm..hold on one moment...." and the next thing I heard was her voicemail! I could not believe I'd spent 38 minutes on hold to be shoved off to her voicemail.  I left her a detailed message and am still awaiting a callback.  In the meantime, Dr. B (Pediatrician) has a few names for us at Emory to call in case we never get through to the new doctor at our current GI practice.  It has certainly been an education the past few weeks merely trying to see a different practitioner!  So we will see what happens...at least we have Emory as a "plan B" in case we never get our "application" approved.

I'm sorry.. you want me to fill out what... and wait how long...to see a doctor in a practice in which I'm already a patient?? Mmmmmmk....

On a different note, Meagan is still doing well with her PT.  She is still showing interest in supported sitting and seems to almost prefer being upright these days. We found a neat toy that encourages her to be upright and she seems to enjoy it.  Although my older girls seem to enjoy it as well.  If only I'd known they wanted a V-tech alphabet cube for Christmas....would have kept things so much simpler!  :)

Meagan still enjoys lounging in her nap nanny.  She doesn't sleep every night in it anymore, as I mentioned before.  One of the reasons for this is something that happened a few nights ago.  We were watching TV and folding laundry while Meagan laid in her nap nanny.  She was playing with a ball and it dropped out of the side.  Normally she would fuss or reach over to try to see where it went.  We would typically get it for her when she got upset and she would go back to playing.  This time, it was different.  There are really no words to describe what happened but when I saw what she was starting to do, I grabbed my phone (ie: my camera...) and snapped photos.  Meagan was able to pull herself up at an angle (like a sit up) and reach over the side and search for her ball.  When she found it, she laid back down and continued to play.  Here is what I saw that night:

                  Got it.....

This was really the end of my blog notes for this entry...but tonight she has started to do something we have been helping her with for a good 6-8 months.  Meagan could never hold two items at one time.  When one hand would grab a toy, the other would let go of the other toy she was holding.  It was like her brain could only tell one hand at a time to hold an item.  Tonight when she was playing with her blocks I heard a noise...bang...bang...bang...  My 3 year old was sitting with Meagan so I didn't  think much of it.  I continued helping my oldest with her religion project and still I heard.. bang...bang...bang.  Then I realized the noise did not sound consistent.  It did not sound like my 3 year old... much to my surprise I looked down and Meagan was laying there, holding two blocks out of her new cube toy, and hitting them together! I took a little video of her.  I could tell she was working incredibly hard.   She normally reacts to me immediately in videos with smiles, funny faces and laughter (as you all have witnessed), but this time I think she was concentrating SO hard, that she couldn't even manage her usual laughs! Meagan seemed to really enjoy her new skill.....and I'm not exaggerating.  I'm pretty sure she laid there and banged blocks together for a good 20 minutes.  My poor oldest daughter, Reilly,  continued working on her project ....with loud banging in the background from her little sister's blocks.  Some may say distraction, but, I say Meagan is just helping Reilly build concentration. :)

Overall she is still doing well.  We have officially passed the 3 month mark with no seizures.  I'm almost nervous to admit it, but, it is something to be thankful for.  This time last year she was hospitalized for a med change...because she was still having 20-40 seizures a day...and something had to be done.  I cannot believe what a difference a year makes in some areas.  On the other hand, this time last year she started to refuse bottles...and here we are a year later dealing with her eating struggles....but I can't really do much different about that right now until we get the GI mess sorted out.  In the meantime, we are shoving anything we can into her that has calories or fats.  She didn't seem too sure about the whipped cream today off of my daughter's milkshake...but I tried to give her as much as she'd take.  After a few minutes, she got quite a kick out of it. She was content that more ended up on her face than in her mouth, but, what kid doesn't.....

Not too sure about this stuff....

Fingers over whipped cream? Come on Megs! 

She thinks she's funny....

So as we wait in "GI limbo," we are anxious to get in with the GI doctor and work on a schedule for Meagan.  Another Hydro family was able to give us the name of a nutritionist at the practice who has worked us in for an appointment.....so that was extremely helpful. Between the nutritionist, her Pediatrician, and her GI doctor (whomever that may be) we will see what they recommend in these next few weeks.  We aren't really nervous about any particular plan they may suggest...more than anything we just want a plan so we can move forward and know what the next several months hold for her regarding her eating.  The longer we go with her growing in length  while trying to push herself at therapy, without having good weight gain, the more of a chance she is going to lose muscle mass and struggle to gain strength as time progresses.  I feel like we are in "crunch time"....needing a proactive goal with an experienced doctor to keep staying in front of her eating struggles so we can keep her momentum going in other areas. Hopefully the GI issue is resolved in the next week or so....or they may have a Mama sitting in their office in person with 5 tired and hungry children.  I'm guessing that may inspire them to deal with me. :)

Such a ham! 


  1. Wow! So much progress. Loved the video. Can Meagan have almond butter, puddings, malts??
    Hugs, Karen

  2. I am so excited to hear about her holding two objects AND reaching over to grab the ball. My niece has a brain disorder, and it is always awe-inspiring to watch her learn something new that we normally take for granted. I will be praying for you to get into the GI doctor quickly. Meagan's close up pictures at the end of the post are so beautiful!