Sunday, May 8, 2011

Pure Joy!

Today is the first time I have taken a picture with my baby's head straight - thank goodness I have a quick shutter on my camera because she only does it for about two seconds! She is just tickled with herself!

Nothing has been a sweeter blessing in my life than being a mother to these two girls. Happy Mother's Day to my sweet friends out there who are all such wonderful mothers!

Saturday, May 7, 2011

Happy Mother's Day to Me!

So I think I got the best mother's day present this week. On her third day of e-stim with her Occupational Therapist, Maggie finally started to show some reaction to the stimulation. You'll see in this video her neck pop up when the stimulation is on.

This next video is a few hours later with her Physical Therapist in our backyard. Maggie is not connected to the machine. In the background the therapist is bending her own neck to the side and then brings it up and asks Maggie to mimic her. And she does! Watch:

What does this all mean? It means that a) Maggie does not have nerve damage b) she does have function in that weak muscle c) hopefully with a lot of therapy and the brace and unconventional treatments like this Maggie will actually be able to hold her head up one day!

In the beginning of the week, when I was feeling so discouraged about it all, Maggie's OT sent an email out to all of her colleagues asking for any other creative suggestions to help Maggie. One person emailed back and asked if Maggie was in Speech Therapy. (She is, but they mostly focus on feeding). Her reasoning was that we need to get Maggie really good at one thing. "Like to boost her confidence?" I asked jokingly. But, yes, that was her reasoning! I lauged it off but after seeing Maggie totally understand what her Physical Therapist is asking of her, I totally get it. The more Maggie can understand and communicate about what she is feeling and doing, the better we can help her. I just feel like it is such a breakthrough that she understands "hold your head up."

I know, as the therapists have reminded me over and over, we have to be careful not to push her too hard because she is going to be really tired (and we don't want to give her a complex!). But, wow, what an encouragement this week and answer to prayer that, yes, there is hope that Maggie will hold her head up on her own one day!

Thank you for continuing to pray.

And here's one more video from this afternoon. You can see everyone is excited about this new developement:

Tuesday, May 3, 2011

Pure Madness

Phone Call #1 (at Baylor for Occupational Therapy; 9:30 am):
Me: "Hi I need to make an appointment with the ENT clinic for my daughter."
CMC (Children's Medical Center): "I cannot connect you directly with the clinic or give you their number but I can connect you to our Kids' Line to who schedules all appointments for that clinic."
Me: "That would be great, thanks."
CMC Kids' Line: "How can I help you?"
Me: I need to make an appointment for my daughter.
CMC Kids' Line: What is her name and date of birth?
Me: Blah Blah
CMC Kids' Line: "What is her address?"
Me: "Blah Blah"
CMC Kids' Line: "Your name, please?"
Me: "Lee Cordon"
CMC Kids' Line: Okay let me connect you to the scheduler."
Me: "I thought you were the scheduler."
CMC Kids' Line: "No, ma'am but I will connect you right now."
Call is disconnected. Ugh.

Phone Call #2 (still at Baylor, 9:45 am):
Same as call #1, but after ten minutes get connected to an actual "scheduler":
Scheduler: "How can I help you?"
Me: "I need to make an appointment for my daughter. Dr. *** recommended that she see an ENT for a second opinion. He specifically recommended Dr. ***** or Dr. ****** for her issues."
Scheduler: "What is her name and date of birth?"
Me: "Blah, Blah."
Scheduler: "Address?"
Me: "Blah Blah"
Scheduler: "Your name?"
Me: "Lee Cordon"
Scheduler: 'Okay, I am going to need a referral from your daughter's Primary Care Doctor before I can make an appointment at that clinic."
Me: "Why do you need that? My insurance does not require us to get a referral for specialists."
Scheduler: "We have to have a referral from her PCP before we can schedule an appointment."
Me: Okay, what is your fax number?"
Scheduler: "***-***-****."
Me: "Thank you."

Phone Call #3 (driving in the car on the way to UT Southwestern for Speech Therapy; 10:15 am):
Me: "Hi Martha, can you please fax a referral to this number?"
Pediatrician's Office: "Sure, I have the form right here and will do it right now."
Me: "Oh thank you, Martha. I really appreciate that."

Phone Call #4 (on the way home from therapy to drop Maggie off with sitter, 11:45 am)
After 10 minutes on the phone with the 'Kids' Line' I finally talk to a "scheduler"....:
Me: "Hi, I think we spoke earlier. My name is Lee Cordon and I am trying to make an appointment for my daughter Margaret Cordon. My doctor's office faxed a referral about an hour ago and I just want to go ahead and book that appointment.
Scheduler: "Let me see if we got that fax. Hold please."
(Hold for 15 minutes listening to tips for Summer Safety. Heard three times that 9,000 kids get injured every year in lawnmower accidents.)
Scheduler: "Hi, yes, ugh, we did not get that fax."
Me: "Are you sure because she said she was sending it right away."
Scheduler: "Yes, you need to call your PCP office back and have them call you as soon as they fax it and then you can call and make an appointment."
Me: "Okay I will call but I am pretty sure they already sent it."
Scheduler: "Well we cannot make an appointment unless we have that fax."
Me: "Okay, thank you."

Phone Call #5 (on the way to get Mary Lawrence from ballet; 12:10 pm)
Me: "Hi Martha, it's Lee Cordon. Did you send that fax? CMC is saying they didn't get it."
Martha: "Yes, I sent it."
Me: "You sure you have the right number? ***-***-****?"
Martha: "Oh yes, we send stuff to that fax all of the time."
Me: "Okay thanks Martha!"

Phone Call #6 (on the way home from taking ML and a friend to lunch; 1:45 pm)
I look up the number for the 'Kids' Line' direct phone number:
CMC Kids' Line: "How can I help you?"
Me: I need to make an appointment for my daughter.
CMC Kids' Line: What is her name and date of birth?
Me: "Blah Blah"
CMC Kids' Line: "What is her address?"
Me: "Blah Blah"
CMC Kids' Line: "Your name, please?"
Me: "Why do I need to tell you all this stuff if you are just going to connect me to a different person who will ask me all the same questions?"
CMC Kids' Line: "Sorry, ma'am, it's what we are supposed to do."
Me: "I know, I'm sorry, I'm just frustrated it's taken so long to just make an appointment today. This is like the fifth time I've called today it feels like."
CMC Kids' Line: I'm sorry, ma'am. Let me connect you right away to a scheduler."
Me: "Thanks."
Click. Disconnected Again.

Phone Call #7 (girl are napping, 2:15 pm)
After getting through to a different scheduler, explaining the situation and how frustrated I was:
Scheduler: "Okay, hold on just a sec while I look through these faxes."
(I listen again to seven minutes of tips on Summer Safety - Do not let your kids pick insect bites. Check.)
Scheduler: "Hi, yes, we cannot find that fax.Are you sure they have the right number?"
Me: "Yes, I called and verified. They definitely sent it to the right number."
Scheduler: "Well call them back and tell them to send it again."
Me: "No I am sorry, but I am not going to do that. I have been on the phone all day trying to book an appointment. This is absolutely ridiculous. I have a child with lots of medical problems and I have spent two hours that I don't have dealing with this. It is absurd."
Scheduler: "I am sorry but we cannot book that appointment without a referral."
Me: "Well, tell me again why you need a referral if my insurance doesn't require one?"
Scheduler: "It has nothing to do with insurance, the specialist just needs to know why you are coming and what your child's issues are."
Me: "Well I can tell you what her problems are and why she needs to come. I am her mother, I've been dealing with her issues for eighteen months."
Scheduler: "Well, what are they?"
Me: "Well she has severe torticollis and ---
Scheduler: " I don't think we even see that here. Let me check."
(On hold for another 5 minutes)
Scheduler: "Okay, I just checked and, well, we still are going to need a referral."
Me: "Can I talk to a nurse in that clinic, please?"
Scheduler: "Hold, please."
(10 more minutes of summer safety tips - seriously, kids need to wear shoes while mowing the yard so they don't cut their toes off? Who knew?)
Nurse: "Hello, how can I help you?"
Me: "Hi, I have been trying to make an appointment all day with this clinic and my child's doctor's office has faxed over a referral but they are saying they didn't receive it. I am so frustrated. Can you please help me?"
Nurse: "Well the reason we need that referral is because the doctor needs to know what your child is coming in for."
Me: "I can tell you that. I know more about her issues than any of her doctors."
Nurse: "Okay, well why is she coming in?"
Me: "She has torticollis and we want a second opinion on her equilibrium issues to see if fluid in her ears could be causing this off balance."
Nurse: "Well let me see if they even see that here. Please hold"
(Now I learn that sandals aren't appropriate either when kids are mowing the lawn...10 more minutes on hold.)
Nurse: "Okay, I'm back, we will see that here. But if we could just get your PCP to write all that stuff down and fax it over..."
Me: "No, I am sorry, but I am done dealing with this; there is no legitimate reason for her PCP to send over a referral. He's not even the one who suggested she go here - it was another specialist."
Nurse: "Well we at least need to get your daughter's medical history from her PCP, too."
Me: "Are you serious!? If you look at your computer you can see that she has been to just about every other clinic at Children's this past year. Her entire medical history is in her electronic file at the hospital. Can't you just use that?"
Nurse: "Oh well, yes I guess we can. Can you hold please?"
Me: "Sure, thanks."
(5 minutes of summer safety tips)
Nurse: Okay, well I guess I can go ahead and book you an appointment.
Me: "Oh thank you!"
Nurse: "But you are not going to be happy when you hear that our first available is August 15th."
Me: "Really? That's crazy."
Nurse: "But let me see ....oh yes, I see an opening where I can fit you in our Southlake location in July. Can you do that?"
Me: "Sure!"
Nurse: "Okay, hold on while I call our Southlake office to see if I can do that."
(Another 8 minutes of Summer Safety Tips)
Nurse: "Okay good news. They have a cancellation on May 23rd in Southlake"
Me: "Oh that is so great. Thank you."
Nurse: "No problem, glad I could help."
Me: "Bless you! Have a great day. Good bye!"

Then I go take Tylenol for a raging headache and seriously think about opening a bottle of wine at 3:30 in the afternoon.

E-stim today...Justin asked if this was her punishment for pulling her tube out so many times.

Monday, May 2, 2011

Steps Back

So all preemie moms know the saying, "Two steps forward, one step back." But goodness, this week it seems Maggie has taken four steps back, maybe more. I know that sounds so 'Negative Nancy' because she is crawling a few feet (yeah!), but with the two major health issues in her life she has definitely had some tough days recently.

You see, ten days ago things were going great. Maggie was on bolus feelings during the day (3-4 separate "meals" through the tube instead of a continuous feed).  And she actually opened her mouth for a bite of baby food, which she hasn't done since last summer cause she hasn't been interested or hungry, or both!  But during the past week it has become obvious that the Botox in her stomach has worn off completely. She is vomiting seven to eight times a day (projectile, mind you), which has made it impossible to get in her goal of 945 ml of Pediasure a day. We maybe can get 800 in, but subtract about 400 for all that vomitting. Translation: if the vomitting doesn't get better, she will start losing weight. Furthermore, she is not interested in food anymore so all that progress we made in the past month has been erased.

To top it off, we visited the "Botox" doctor last week for a follow up and she was just stumped that Maggie's neck doesn't look any better. I was so looking forward to our visit, hoping that she had another trick up her sleeve that I hadn't thought of. With her finger on her chin, she just stared at Maggie like a specimen. (I am so used to this look; I hate this look!) And she had nothing really new to offer except another round of Botox. That's fine, we'll try it again. But the problem is not the tight side now, but the opposite side that refuses to hold her head up. Cue the deep discouragement.

To top it all off, we went to the GI doctor (sorry for all the boring doctor reports) to finally put the new button in and he looked at her and said, "Her neck looks worse!" Are you serious? It's not that I thought it was getting better, but worse?! Seriously, it took everything in me not to burst out crying. And I told him that, too!

Her occupational therapist thinks that Maggie's left neck muscle is completely paralyzed due to nerve damage or just from not being used at all. We watch her and she never uses that left SCM muscle to try and lift her head now - it's like her brain is doesn't even know it's there.

So...we are going to try the last few things we know to do and all the things we didn't want to do because it's painful. First, we are going electronic stimulation to zap the weak muscle to see if we can "jump start" it. No one thinks this treatment really works, but her therapist and I are desperate and we are going to start tomorrow. Later the neurologist can try more painful nerve tests. Even though her opthamologist ruled out eye problems as a cause, I getting a second opinion on that this week.

After that, I just don't know what we are going to do.  I am scared, discouraged, angry, frustrated, and just plain exhausted from dealing with it. Combined with the return of the vomiting, I think Justin is starting to worry about my sanity!

How hard it is for me as a perfectionist to look at Maggie's pictures from Easter one year ago and compare them with this year and realize that her neck is in the exact same angle. What was all this torture for? I wonder. This is so awful, but honestly it is so hard for me to look at pictures of Maggie because it reminds me that I have failed in this regard. "What could I have done differently?" I keep asking myself.. Those questions are never really useful, but they still taunt me at four in the morning after I get up to clean up her vomit, wipe her face, and adjust her brace. 

"Her neck won't be like that forever," people say. "It will get better one day." I believe that, and I appreciate that positive outlook, I really do. But how is it going to get better? While I am praying fervently that she will just start holding her head up one day, most likely it is going to be a lot of hard work to get there. It is going to be me trekking Maggie to dozens of doctors and therapists, spending hours researching treatments, and countless phone calls fighting insurance claims. It is going to be me torturing her with stretching five times a day and forcing her into an uncomfortable brace 16 hours a day. It is a daunting task before me, and that's why I am praying for just a small sign that her muscles are working properly or will work properly. If I could  just see her start trying to use that muscle I would be re-energized and full of hope again.

I know it seems so silly to pray for someone's neck; it does seem a little shallow or cosmetic especially when I consider how much worse it could have been with Maggie. But I truly believe that Maggie is in pain from her neck like that all of the time. I don't buy the theory that she's used to it. Try holding your neck like that for five minutes and you will have a new appreciation for my baby's endurance! Furthermore, I truly believe we are stressing her out and hurting her with all the stretching and strengthening. I feel I just can't torture her anymore (especially after holding her down while they changed out her button today and she started bleeding everywhere!).  It's just not natural as a mother to constantly be doing things that makes your baby scream, writhe, and gag.

I just pray for some encouragement or just tiny bit of improvement in Maggie soon. I just need something to keep going...