Face of hope

Face of hope
Courtesy: TIffany Kay Photography

Monday, March 24, 2014

GI Follow Up

Today Meagan went to see Dr. B again for her GI follow up.  There was a lot to discuss! We arrived bright and early and big sister Maura was there with us for support.

Maura showing Meagan all the fun bears on the paper

We checked in and got a new weight and height - 20 pounds and 32 1/2 inches.  A big drop in weight and no change in height. This puts her weight now at .01% from being up to the 4%,  her length at .02% from being at the 13%, and her weight for length now completely off the charts after it had been following a curve close to the 1% finally - a huge change downward from last Fall. Last Fall she was "holding steady" finally at 19 pounds, so we had all expected a lot more weight gain than what we have now.  She was at 21 pounds 10 ounces last month but for some reason dropped off of that with no explanation of calories or height difference.  In other news, her head circumference is 44.5cm, which has also stagnated quite a bit in the last year putting her head circumference in the 1% for her age. You may think "hey this is good for a hydro kid"... well yes and no.  Even though we are delighted her head size has come down, going too much the other way is also not good.  The head/skull should still grow even at a slower rate, but, we have seen this also stop.   This is something Dr. R is watching because of her bone fusion so we will see what they say about that when she sees him in April.  

Waiting for Dr. B - silly girl


Because of Meagan's weight dropping by a pound and her height stagnating over the last few months, Dr. B said we need to change her feeding plan so we don't see a stall in development at this point.  Dr. B pulled out her growth charts since she has had her gtube and there is a nice sharp rise visit after visit, but this time, both her weight and height have dropped off the curve again.  He said he wouldn't be as concerned if she had grown a lot in height and her weight was delayed, but being that they have both dropped he wants to try and add more feeds.  He also wants us to limit her oral intake to a certain amount of minutes during the day to see if that helps preserve some more calories.  We are supposed to do this new regiment for two months and come back for a re-check.  If she has progressed we will stay this course of increased tube feeds and oral feeding for only "x" minutes at a time.  If she hasn't progressed then we will move on to plan B which will be to take blood work to check growth horomones/pituitary function..etc.

Charts for weight and length - completely fallen off again.

Today Dr. B also said it was time for Meagan to get a new button.  Basically, the gtube has a balloon at the end which is inserted into the stomach and this balloon can go bad over time and burst.  It can happen at any time, but, generally it should be ok for "x" number of months.  Every "x" number of months, we are to change out her g-button so it stays as "fresh" as possible to minimize the risk of an emergent burst/reinsertion. He said he would write a quick order and we could go wait for him to change out her tube and show us how to do it so we can continue to do so at home.

 We went down to first floor to the endoscopy clinic and signed in.  Not long after Dr. B came down with a new button set.  Of course Meagan saw the gloves, the hospital bed, and the white sheets and started freaking out.  Luckily, Maura was with us so she jumped right on the bed with Meagan and helped calm her down.  Dr. B was then able to do the button change with minimal fidgeting from Meagan ... a lot of screaming, but minimal fidgeting.  Wasting no time, Maura jumped right up on the bed with her and made silly faces to cheer her up and Meagan was as good as new.  Just like Corduroy the bear with a brand new shiny button :)

Waiting for Dr. B in Endoscopy Clinic

Maura distracting Megs by tackling her on the hospital bed

Meagan getting her button changed - don't worry, it wasn't hurting her!! 
She just does not like to be held down at all! Can't blame her!

A minute later - all better because of big sister's crazy antics

Overall a great appointment with Dr. B.  So lucky to have such wonderful specialists on top of Meagan's care and making sure we are taking her in the right direction to do the best by her health and nutrition.  We gathered up Meagan's tube supplies, a new prescription from Dr. B and made our way to the door.  As we left Meagan screamed "BYEEEEE!!! SEEE YA!!!!!"  Yep, I think she was ready to get home! Oh, and how could I forget! An added bonus to her day? On the way out Meagan got to see her BFF Claire who was there for an appointment as well! Of course it didn't dawn on me to take a picture, but Megs was sure to ask Claire for a Cinderella playdate very soon.

 Loves to sport her cute button cover  

Tuesday, March 18, 2014

Dear Lady

Dear lady who sits in front of me at church.....
You don't know me, and I don't really know you. But you have had a profound impact on me. Bear with me as I weave through this post - it's something that's been on my mind for over two years...and I hope in the end you understand.
  I remember one of the first times we sat in the cry room for Mass... it's always an interesting experience watching mothers trying to entertain their toddlers, let their older babies get out their noises and restlessness, and babies eating or being rocked to sleep....week to week it is different.  Some Sundays it's loud and busy... some Sundays it is quiet and calm.  But, such are kids - and how wonderful they are at Mass learning and praying with their parents.  I first noticed your beautiful family because you started to be the "constant"... whether hectic or peaceful, you were always there. Every Sunday. In the front row. Two boys, two girls, mom and dad. The kids always sweet and you and your husband showing such a good example of why we were there - paying attention, teaching, helping, and praying. You may be thinking..."ok,what's the big deal?" I will tell you.

One Sunday, we were sitting in our usual spot, and you were in yours... and something happened.  I saw one of your sons started to have a hard time.  He became uncomfortable, started to move around,  became physically resistant, and ultimately, resulted in a major outburst in which your husband took him out the back door to the hallways. Having grown up around special needs children due to my mom's job, it was not lost on me he was struggling that day with whatever his challenges were, and it didn't phase me as "unusual" by any means.  But then  I noticed  the stares of some of the parents - probably not malicious by any means, but the curiosity  focused on your family certainly not helpful in that situation.  Their discomfort and awkwardness at wondering "what" was going on was obvious. Looking back ahead of my seat, I noticed the tears in your eyes. I saw your other children lean in and comfort you and although it was a really tough moment, I saw you re-focus in prayer and willingly take the hugs from your other children.  I remember feeling so many feelings, but, the one that struck me most was admiration. I watched the whole thing unfold, and both you and your husband showed such resolve. Strength. And Love.  I admired your compassion for your son, and your children's compassion for you.  I admired your husband's strength as he tried to calm him.  I admired your son for pushing forth when he was obviously having a challenging day.  There were many moments that morning I wanted to tell you "You're doing a great job..."... or just reach out and  offer some sort of magical words of wisdom and or gesture of compassion to let you know I cared.  But I didn't.  You may be thinking - why is this important?

 As I said, I had grown up around all different children - as a matter of fact I would even go and give music demonstrations or presentations to some of my mother's students (who had diverse diagnoses) with no qualms whatsoever.  It was such a joy to be around the children she worked with and I never gave a second thought to speaking to or smiling at a special needs child or their parents. But that morning at Mass I was weakened.  We had just recently had our 19 week ultrasound and our daughter was given a very uncertain, and therefore according to the doctors, "doom and gloom" prenatal diagnosis of a congenital brain condition.  We had come off a week of negative appointments and a million "she will never do ______" and "you have four older kids.. this will be too hard on them..." among several other comments on what we "should" do "about her"........  I remember feeling confused and sad, and most of all scared and uncertain.  Not in our resolve to carry her to term and deal with whatever her needs would be, but just about things in general and all the changes that were about to happen to our family.  There was a certain malaise or black cloud that had taken over the pregnancy.  Then we went to Mass that day. I realized your son hadn't been dealt the easiest hand in life but then it made sense to me.  Seeing him have a rough time that morning, but then seeing subsequent Sundays where he would thrive and joyfully draw on his drawing pad, seeing your tears, but then seeing how much grace you and your husband had made me feel strong for the first time since our ultrasound.  I remember thinking "This family is amazing. We are going to be fine. We can get through any challenge with our daughter..."  And that was that. You gave me my voice back.

Now anyone who knows me knows I certainly have a voice. But, no matter how strong someone is, unexpected events in life can certainly throw even the strongest person for a loop.  And it did that for me in the beginning. But you taught me how to get my strength back and how to fight for my daughter.  I don't know if we have even said two words to each other in these years, but, your actions and outward showing of love, vulnerability, and strength all wrapped up into one inspired me.  You inspired me to be the best parent I can to our special needs child.  You inspired me to help guide my older children through our new "normal."  You inspired me to not be afraid of the challenges  and not worry what others may think. You inspired me to know when the bad moments happen to just say "tomorrow is a new day."  Most importantly, you inspired me to never again stay silent when another special needs parent may just need a smile, or a positive comment, or a simple gesture of kindness....especially in those moments that present the most challenges.

So thank you. Thank you for being there each week, good or bad, and thank you for the example you and your beautiful family put forth.  You truly are a shining example for those of us just entering this journey and have touched lives more than you know.

Our little one is now 2 1/2 years old - many challenges for sure, but many many bright successes. Many struggles for her to do what her sisters do with no effort, but many moments of joy when she does accomplish a new skill or milestone.  Many awkward moments of our own when something is bothering her and we just can't figure it out why she's screaming, but many hours of sweet snuggles trying to comfort her and show her our love. Dear lady who sits in front of me at Mass, I want to tell you what I didn't have the courage to do that day - you are just that. Dear. Simply dear. And don't ever forget it.

Monday, March 3, 2014

AFO time

Meagan's PT has been waiting on fitting Meagan for any sort of braces.  Mostly because she wasn't sure Meagan would accept them to help her since Megs absolutely despises any sort of equipment on her body.  Typically any equipment or devices in the past made her freak out and it evolved into such an emotional break down, we would never get to the therapeutic purpose of the equipment or device anyway.  Lately though, with Meagan now sitting on her own, her PT really wants to work on getting Meagan some weight on her feet.  Since Meagan can scooch on her bottom, her arms are finally gaining some strength from all the pushing, but her legs, especially her lower legs, are still quite weak.  Her feet have also not grown in over a year.  The PT wants Meagan to start having more assisted time on her feet so we can stimulate some growth for her feet to support her body and also to stimulate her leg muscles to get stronger.

Meagan used to hate any pressure on her feet, but lately, she does tolerate the PT or myself holding her upright with her feet touching the floor.  She won't hold much weight but she will allow her feet to touch the floor and lift them up to "tap, tap, tap" the floor with her toes or bottom of her foot which is a huge improvement.  Meagan's PT thought now would be the perfect time to fit her for some braces since she seems to be tolerating some of this and is hopeful we can get her into the braces without much fight so she gets used to them and sees how they can help her.

Meagan's legs collapse inward if we try to help her stand

Originally the PT was thinking Meagan could use some SMOs (read about them here) but it is apparent now Meagan needs a lot more support.  So the PT asked Meagan to be fitted for AFOs (you can read about those here), or Ankle Foot Orthotics.  It is a brace that will go from under her foot up to her knee, and will be solid, holding her lower leg in position and also offereing support for working on standing/weight bearing.  Typically, special shoes are also purchased with the AFO so the child can fit their braced foot into the shoe easily, but in Meagan's case, her AFO will have tread directly on the bottom of it.  In essence, it will be her "shoe."  The PT thinks this is the best for her since her lower legs are so tiny so they aren't trying to hold the weight of a shoe on top of the weight of the brace.

Patiently waiting to go to a casting room

The casting for her AFOs was this morning. In typical Meagan fashion, she screamed as soon as we walked into the room - she has had so much done she cries or screams at any doctor office, including mine or her sisters.  We had a great guy working with us who talked to Meagan the whole time, made funny noises, and asked her questions to distract her from the casting.  She did "ok" through the casting, and surprisingly, through them cutting the casts off - the time she screamed the most was actually when they had to massage her foot and lower leg to set the cast in a certain position - something we are working on with her sensory-wise.  Once the casting was over, they showed us her cute little legs - I didn't realize how tiny they really were!

Putting on the casting stockings and setting the center guide

Putting on the plaster

All done!

It should be about 4 weeks for insurance to respond, let the Orthotics office know what we owe and for them to make her AFOs.  Once we get them we will go back and be instructed on how to put her legs in them each day and what exercises we will do with her to help boost her weight bearing and learning to stand.  As a plus, the AFOs come in very cute designs - they showed many of them to Meagan but she seemed to respond the most to one called "Sweetheart"... which is kind of funny because we call her that a lot.

Meagan's AFO pattern

Quite a busy morning, but excited for this next step for Megs! Now we just have to count down the 4 weeks until she is officially into her new Sweetheart AFOs and hopefully from there we will see a great improvement in her efforts at assisted standing.  In other news, Maura found a way to entertain herself during the casting.... this is only one screenshot off my phone but I'm pretty sure there are about 100 "selfies" ...... Oh Maura!