Face of hope

Face of hope
Courtesy: TIffany Kay Photography

Thursday, September 27, 2012

Appointment week!

It has been quite a busy week since Meagan's birthday! A lot of doctor's appointments, therapies, and her 1 year well check.  Updates are below:

1. Shoulders: We were referred  an Orthopedist.  Meagan can play opossum with the best of them at therapies... but... whenever her arms are pushed above her shoulder level, she cries.  And I don't mean fusses because she doesn't want to do it.  She cries. And winces.  It is like she is in pain or extreme discomfort.  Her Pediatrician wants us to follow up because she feels something may not be right with Meagan's shoulder joints.  She said it's very possible it is "normal" for her range of development, but, it is best to get it checked out before the therapists push her past the point of pain.  Meagan's PT also weighed in telling me that kids like Meagan don't weight bear on their arms like typical children, so their muscles around the rotator cuff may not be built up properly. Therefore, some "popping" and "grinding" may be felt/heard due to the lack of strength and muscle tone.  But, nonetheless, it's still good to have the Ortho to give us the "ok" to continue to push Meagan's range of motion, so we are sure we aren't hurting her as we continue with her therapy. We don't want to unintentionally be creating a new problem for her.

2. Hearing: Meagan failed parts of the hearing test in both ears.  They ran the test twice just in case and came up with the same results.  I know she can hear because she does answer to my call, her name, and also to some of her noisy toys ... but there are some times where I feel she is staring and doesn't hear me. I don't know if those are seizure moments, or truly her not hearing certain tones.  She does react to us when we 'drum' on the floor or make some sort of vibration on her playmat where she will then turn to our attention, and she actually loves anything that makes movement or vibrations.  More than anything, I feel this is just a "follow up" to get a really "true" test on her hearing and how well she does.  It will be interesting to see if they want to order a new test, or just watch and see.  I'm almost positive the secondary test will come back fine based on Meagan's behavior and reactions to noise, but, either way, at least her Pediatrician is on top of things and we will have certain answers after a few more in depth hearing tests.

3. Weight:  The basic theme of the appointment was really Meagan's weight.  This isn't a mystery nor a surprise to me (or anyone who has been following Meagan's story), as she's always been slipping behind the curve in weight.  We met with the GI doctor last month, where he prescribed an appetite stimulant, and also had us "pack" her bottles with more calories to try and put weight on her.  Here we are after almost a month of those methods, and Meagan has dropped weight again.  For the first time today, her Pediatrician brought up the possibility of using a G-tube.  We aren't actively going down that path yet, but, if at her next weight check in 4-6 weeks, Meagan is showing no improvement in weight, or in her feeding therapy, it will be time to go back to the GI doctor and talk seriously about the placement of a G-tube.  Meagan is "tolerating" feeding therapy, but, she has a lot of sensory and developmental issues that are blocking her from "properly" eating solid foods.  She can get about 5-10 teeny tiny "bites" of food off of a spoon with her feeding therapist.. but, this is nowhere near what she needs to sustain herself especially as she enters into toddlerhood.  I am so happy she's showing "some" interest in food, however I just don't know where that will end up in a few months from now. Dr. B also feels that the rate at which Meagan eats her bottle could start to contribute to her weight loss.  Meagan takes a good 20-25 minutes to eat 3-4 ounces out of a bottle, no matter the bottle type or nipple.  As she is trying to grow, and slows in her bottle eating, she's almost wasting more calories just to take that long to drink the bottle - therefore, she's not getting the full calorie intake from the formula.
 I'm happy Meagan's Pediatrician (Dr. B) is not an "alarmist," and that she is staying on top of Meagan's weight issues.  I also appreciate Dr. B discussing openly with me the possibilities of what we could be facing this year regarding Meagan's eating, but acting like it could just be the next step in her development.  So we will see how feeding therapy continues to go...and if no improvement in another month, we will definitely be back to the GI doctor to seriously discuss G-tube placement.  My main concern is not how Meagan gets her calories, but that she gets enough to grow and facilitate her therapies.  I also don't want feeding to be a negative experience, so if a tube means she can work at orally eating on her own schedule, and take her own time to build up her calorie intake, it will be what we need to do for her.  It is important to me Meagan gets her proper nutrition, and feels full and satisfied.... it is not important to me the method by which we accomplish that.

4. Plastic Surgery post-op: Meagan had her first post-op appointment with Dr. W.  It went pretty well.
My only "pressing" question for Dr. W was really about Meagan's incision.  It looks great overall, and is healing nicely.  The outside stitches are starting to fall off, and all looked OK to me up until a few days ago.  I noticed an area 'puffing out' on the top of her head. I could see into her incision, and coming out of the hole there was a thick purple thread.  Dr. W looked at it and said it was part of a suture used deep inside her head. Somehow, it had found it's way out.  He said those stitches should have dissolved, and this one still could.  Not sure why it found its way to the top of her incision, but it did.  He said to keep the area clean, put antibacterial ointment on it, and we will watch it.  It doesn't happen all the time, and it's not ideal when it does, but, it does happen sometimes, and Meagan is one of those "sometime" it seems.  He said as long as other areas don't show up, it should be ok.

Well, of course this afternoon, I was feeding Meagan and noticed this:

So, now we have two areas of purple stitching coming out from deep inside her head.  I hope these are just flukes, and not a sign of her body not dissolving them, but rejecting them and finding any way out of her head that it can.  We will keep watching it, cleaning the areas and I will re-ask the Neurosurgeon at her follow up early next week.  I did put in a call to Dr R's nurse just as a precaution, and she said it "should" be fine, but to just keep an eye on it.  I'm sure it'll be fine, it just looks pretty bad and strange!

I was also 'amused' by Dr W's assessment of Meagan's head.  He was actually rather shocked by the appearance in the front section.  It is extremely sunken and very bumpy.  He said he really did not expect that outcome at all.  Of course, I was kind of giggling to myself because all I could think about was my post about missing Meagan's head ridges... well they are baaaack, and with a vengeance. Haha.  I told Dr. W... "It's ok.. the goal was head space for brain growth, not a perfect head. I honestly hadn't even thought about it/"  He agreed but just added he didn't expect such a drastic "crater" effect in the front of her head.  I told him it was like when my kids build a tent with chairs.  If there's nothing holding the sheet up, it sinks.  Just like Meagan's head.  Between the now split apart bones, if there is no brain tissue right there to hold the skin up, then there isn't.  Not much we can do about that! Dr. R may turn up her shunt next week and see if she can go back to the higher setting she was on pre-surgery.  If so, then some fluid build up should help push some of that skin outward. Hopefully it does a little bit as some of the craters have become quite a bit prominent.

Overall, the rest of Meagan's check ups went very well this week.  She got her 3 vaccines, including her flu shot, and didn't even cry.  It didn't surprise me with what she's recently been through.. Meagan probably thought " what?... everything I've been through ... a shot doesn't phase me!" :)

We will go back in a month to check Meagan's weight and re-evaluate her eating habits, and go from there.  So proud of my girl.


  1. So glad the appointments went well. When I had my D&C after the death of our third baby there was some complications and the doctor had to put in a scope through my belly button. So I had a small incision there. It was stitched up with the dissoluble stitches. It was almost mostly healed when I started noticing a small bump forming. It didn't turn purple like what you have with Meaghan, but it was essentially the same thing. One stitch that didn't dissolve and ended up working its way out. It was definitely weird! It got a little tender to the touch too (didn't hurt, just tender) until finally I saw the end of the stitch and was able to pull it out. One of the weirdest things I've ever done! Hope this is what Meaghan's stitches turn out to eb and it heals just fine! Such an amazing little girl you have and she has an amazing mom and family behind her!

    1. Thanks for the thread tip .. hopefully hers is the same.. just extra that is working it's way out. Thanks! :)

  2. I've had stitches pop out of an incision as well after a uterine surgery. It was kinda weird but nothing bad came of it. I have to commend you on your calmness regarding the weight issue. We've been dealing with this with Ellie since her birth and my doctor has had me so worked up about it that it makes me crazy. At least in your writing, you seem so calm and cool about it. Whenever I write about it, its all "Ellie isn't gaining weight...ahhhhh the world is ending". Its been such a huge struggle for us (she is 3 and is just barely 20 lbs). I hope the hearing and shoulders turn out to be OK.