Monday, March 28, 2011

Five Days After Botox....

I guess I should start with the positive : Maggie's vomiting has gotten dramatically better since the Botox! It is really quite amazing - she has not vomited at all the past few nights whereas she usually is soaking wet in the morning. We even felt so confident as to switch her from baby formula to pediasure (which is what tube fed babies consume). And still no vomiting- which means she must have outgrown her milk protein allergy.
She's still on a continuous feed so our next step is to slowly wean her off of that. We are still going to switch her button for a new brand. But the GI doctor says it will be really uncomfortable for her if he changes it while she is awake, so we have the option of waiting until her next Botox injection in June when she will be under anesthesia. I don't want to be cruel, but I really don't want to wait three months for that....

Anyway, despite all of this good news, I was very discouraged over the weekend because her neck did not respond like I had hoped. I just cried much of the evening on Friday I guess because I had so much hope that this would be an instant fix and make her neck pop back into place. But it wasn't. The Botox did it's job in loosening up the tight muscles on her right side, but the muscles on her left side are not strong enough to hold her head up. We are doing intensive physical and occupational therapy in addition to craniosacral therapy (which is an alternative therapy that's really cool and probably sounds cooky to most but we are desperate!). We usually do OT and PT each twice a week but we have hired an additional person to come in between so we can maximize these first few weeks when the Botox is most effective. We are doing stretching and straightening exercises five times a day in addition to the therapy visits. She is taped up on her weak side with hot pink therapy tape (supposed to stimulate weak muscles) and her new neurologist prescribed a medicine used on Parkinson's patients to help with muscle rigidity. In short, we are doing everything possible to know for sure if this is or isn't a muscle issue.

Here are some pictures of what the last week has looked like for Maggie:

(at the hospital)

We're even positioning her at night with the boppy (at least until we go to sleep because I worry about her suffocating):

she's on the verge of crawling...

we've had some fun times, too:

There is so much riding on these next few weeks and months. Will she or won't she have to have a permanent halo drilled into her head if this therapy doesn't work to teach her hold to hold her neck straight? Or if it is not a muscle issue related to not having any fluid, then it's got to be something else much worse. This new neurologist agrees that the lack of amniotic fluid is a compelling reason for her neck issue. But he said if the Botox doesn't work we can do some more (painful) nerve and muscle tests to see if she has a neuromuscular disorder. He said, "I mean, if she gets RSV, and is on a ventilator and we have to put a trach in, it'd be nice to know if the trach would just be temporary or if she had some neuromuscular thing that would keep her on in the rest of her life." WHAT!!!!???? Seriously? I just can't handle that kind of talk right now. I thought we were past all this talk?

Anyways, I am sure that visit contributed to my feelings of discouragement and defeat over the weekend about it. Justin can't figure out why this issue is so hard for me. And I don't know the answer. Is it that it's almost been two years since I got pregnant and this all began and I am just tired? Am I being selfish in wanting a normal life back? Is it a superficial thing where I just want her to look normal? Is it my type-A personality where I just want one of her issues to be checked off my list (thinking about the feeding issues we have to tackle next)? Or is it just plain unbelief?

I feel like I was able to trust the Lord with Maggie's life as I walked through the shadows of her imminent and probable death, but I can't seem to trust turn this one medical issue over to Him?  If the Lord can spare Maggie's life, can he not also heal one body part? If he can give us the strength to endure four months of agony on bed rest, can he not give me the strength to endure this seemingly minor trial in comparison? How quickly we forget as humans what God has done for us. If God adorns the lilies to be more glorious than Solomon's temple, how much more will he provide for His beloved children.

So after a thoughtful weekend, I am feeling encouraged once again and motivated to move forward. Thank you to all, as always, for continuing to pray for Maggie.

Consider the lilies of the field, how they grow: they neither toil nor spin, yet I tell you, even Solomon in all his glory was not arrayed like one of these. But if God so clothes the grass of the field, which today is alive and tomorrow is thrown into the oven, will he not much more clothe you, O you of little faith?  Matthew 6:28-30

Wednesday, March 23, 2011

We're home!

Everything went great this morning. Maggie is home and in her brace. We won't know if the Botox is working for a few days...but thankfully she did fine under anesthesia.

But there was a development on the vomiting front. While doing the endoscopy her GI doctor discovered that her g-button balloon(the inside part) looks to be blocking the exit of her stomach into the small intestine. Its almost like you put a baseball in the bottom of your sink. Water would take a lot longer to drain out. Same thing with Maggie- the milk can't get drain fast enough into small intestine so it just comes back up!

So if the Botox does not help the vomiting over the next week we will try to switch brands of g-buttons or may have to start all over and have a new hole put in. This is potentially a huge breakthrough and confirms my instinct all along that something was not right with the button because her vomiting got so much worse after it was placed in September. So we are thankful to at least be getting somewhere with that.

Thank you all for praying. Will keep you posted on her progress!

- Posted using BlogPress from my iPhone

Tuesday, March 22, 2011

Botox tomorrow

Our hospital bags are packed, Maggie has had her pre-op breathing treatments, and my alarm is set for five am tomorrow morning.  After all the doctors we've seen over the past year, I am so glad that we are finally taking some serious action about her neck and her GERD (gastroesophageal reflux disease). Of course, I would be lying if I said I wasn't a a little nervous (I pulled weeds and planted flowers like a maniac today!), but I truly believe that this is the best option for Maggie right now and trust that God hears our prayers for protection, prescision, and healing.

Oh I hope that this fixes her neck and allows her to sit up straight! I am so excited for the progress we are hopefully going to see in the coming days and weeks. Actually tonight Maggie gave us a sneak peek and pushed herself into a sitting position while playing on the bed. This is no big deal for most babies, but for Maggie is it huge! We have been working on this for months - I've endured torturous screams from my poor baby as we stretched her severely tight legs and forced her to strengthen her extremely weak core day after day with no apparent results. But then, tonight, she does it like it is second nature. (I guess that it was second nature to her but she just didn't have the physical capactiy to do it until now!).

Thursday, March 17, 2011

Next Wednesday

Maggie is having her Botox on Wednesday. Thankfully the two doctors managed to coordinate the procedures so she will be having an endoscopy, Botox in her stomach, and Botox in her neck. I am praying for no complications, for the Botox not to travel to other parts of her body, and for it to work. How wonderful would that be!

Thursday, March 10, 2011

The Daffodil Dance

How magnificent it is to see green shoots coming out of the ground amidst a still cold winter. And then a few weeks later - POP!- the daffodils burst open bright as the sun, as if to say, "Spring is Coming, I promise, the cold, hard times of winter are nearly over."

My friend Megan loved daffodils. That is why after she died her parents started The Daffodil Dance in Atlanta, to honor her life and raise support for Creutzfeldt-Jacob disease research, which is the disease that took her life at age 27.

That first Spring after her death Megan's parents' street was lined with hundreds of yellow daffodils - their sweet neighbors started a tradition the Fall before and planted the bulbs in her memory. How touching it must have been for her grieving parents- after that first sad winter without her - to drive home surrounded by blooming yellow daffodils on every side.

Today the daffodil dance continues in Dallas in a small way. How I love that I I think of Megan every time I pull into my driveway. And how I love the story of hope that God gives us daily with His beautiful creation, if we only take the time to look.


Megan's mom penned a beautiful book about her journey of suffering and hope with Megan and I highly recommend it to anyone suffering from a loss or illness of a loved one. Or anyone who wants to read an amazing story of the love and faith of two godly women and their precious mother-daughter relationship. What Marcia Gaddis did for her daughter is a moving testament for all of us mothers out there.

                     "When God Comes Near," by Marcia Gaddis (available on Amazon)

Megan's parents came to meet Maggie, who they so diligently pray for, a few months ago. How precious a visit it was....

"Daffodils" (1804)
by William Wordsworth

I WANDER'D lonely as a cloud
That floats on high o'er vales and hills,
When all at once I saw a crowd,
A host, of golden daffodils;
Beside the lake, beneath the trees,
Fluttering and dancing in the breeze.
Continuous as the stars that shine

And twinkle on the Milky Way,
They stretch'd in never-ending line
Along the margin of a bay:
Ten thousand saw I at a glance,
Tossing their heads in sprightly dance.
The waves beside them danced; but they

Out-did the sparkling waves in glee:
A poet could not but be gay,
In such a jocund company:
I gazed -- and gazed -- but little thought
What wealth the show to me had brought:
For oft, when on my couch I lie
In vacant or in pensive mood,
They flash upon that inward eye
Which is the bliss of solitude;
And then my heart with pleasure fills,
And dances with the daffodils.

Monday, March 7, 2011

New brace

It's going to take some getting used to...

Posted using BlogPress from my iPhone

Saturday, March 5, 2011

Vintage Movie Night

So even though I didn't really feel up to having a party for my 30th birthday, Justin insisted that I have one. So he hosted a party for some of my friends at a local movie theater. We watched my favorite old film, "Bringing up Baby," with Katharine Hepburn and Carey Grant.  It was a great night and I am so thankful to my sweet husband and friends for making my day so special - and for making me have fun!!

Movie Fare!


Red Velvet Cupcakes - my favorite!

The Favors

Memories of me as a "Baby"
Orignial Movie Poster of the Film

My sister came in town - so fun!

 Sweet friends...

What a great host!

 Yeah for 30!
(Thank you Whitney!)
Movie Poster Invitation

Thursday, March 3, 2011

Botox, Botox, and more Botox

Needless to say, it's been a hard week. Three hours at Children's Hospital on Monday doing an upper GI study and discussing treatment plans for the once again confirmed horrible reflux. Three horrible hours at Scottish Rite yesterday making her brace, which really does look like a torture device. An hour at the neurosurgeon checking stitches that were looking infected. And two hours at the Physical Medicine Doctor consulting about her neck.

The good news is that she thinks the Botox will help Maggie's neck. Maggie will go under anethesia for the procedure (it has to be so precise and she can't have any moving). The bad news is that the doctor only does these type of procedures in the O.R.once a month, and next week is all full, which means we have to wait five more weeks until her next appointment - which is April 13th, which is Mary Lawrence's 4th birthday.

In the grand scheme of things, this is not that big of a deal. But after the week we've had, after the nurse called to tell me this, I got off the phone and just started bawling like a complete idiot. I just want her to have the Botox asap so we know if it works or not. It's been a year getting to the bottom of the issues and now it's dragging out even longer. "Nothing is ever easy; everything takes so long," I sobbed to Justin over the phone as he's on a plane waiting to take off (bad timing on his part to call during my breakdown). "Mary Lawrence always gets pushed aside for Maggie's needs and it's not fair," I boo hooed.

Pitiful, just pitiful I tell you. I just want so badly for this to all be over, for the torture tests to end and for Maggie to get better. On top of that, I am overwhelmed by the constant vomiting and the feeding issues that we'll be battling for years to come.

I told the GI doctor that her PT thinks Maggie will walk in the next 2-4 months (yeah!) so what are we going to do about this continuous feeding thing? I mean I can't follow her around with the IV pole all day long. He told me- with a straight face- that she'll just have to carry around the feeding backpack. The hilarity of this idea pretty much makes up for this week! The feeding backpack weighs about 6 pounds, not including the milk. I'm sorry, but I just don't see how a little baby is going to swing that.

Oh so many issues and never any solid answers.I think we've pretty much decided that he's going to try a new procedure on her (not new to him, just newer as far as treatment options go). Basically he will inject Botox (yes, more Botox) into the opening of the part of the stomach that empties into her intestines. The opening would no longer be able close- the idea being that contents would flow out of the stomach faster, hopefully helping the vomiting. There are other options that would help her reflux but would still keep her on a 24 feed, but I told him I want to be aggressive and try to do something that would get her back to normal feedings.

Anyway, I can't believe tomorrow is my 30th birthday. Is it bad that I feel like I'm turning 40?! Maybe I need to swipe a few syringes of Maggie's Botox..,

- Posted using BlogPress from my iPhone

Tuesday, March 1, 2011

Uh Oh!

This is very embarrassing and I need to issue an apology to some...For a while now I've been thinking it is so strange that no one leaves voice mails on our home line. I kept calling to check and it said "no messages." Not so weird, I told  myself, since everyone calls me on my cell phone.

But a few weeks ago, Maggie's GI doctor told me he tried to leave me a message on our home phone and it said, "voice mailbox full." Hmm, that's strange, I thought, and made a mental note to call AT&T, but just never had time to call. But today, I am awaiting that same doctor to call  me and didn't want him to think I was a complete loser for still not tending to my phone issues. So I called AT&T and was shocked to find out that I have - wait for it - 143 voice mails. And they date back to January 2010.

I am sure there are people out there who most definitely think we are the rudest people for not returning phone calls. To those people, I am so so sorry.

I don't' know how I will  ever have time to listen to that many voicemails so I'm just deleting them without even listening to them. (I'll probably listen to the recent ones to make sure I haven't missed any majorly important calls about Maggie!).

Anyway, just thought this would make other moms out there who feel like they can't ever get on top of things a whole lot better about themselves....surely no one could be as moronic as me for thinking no one has left us a voice mail in over a year.