Wild Goose Chase

If someone told you to turn a piece of paper with a "P" on it clockwise 30 times, would you do it if they promised it would help your child get better? Let me answer that for you - yes you would.

It seems once again we are back to reevaluating Maggie's neck. We seem to be in a pattern of going to a new doctor, following their advice for 3-4 months, only to realize whatever they told us to do is not working. And then I panic that she has some horrible condition that we have missed all along. I then find myself waking at 2 am to research on my iPhone (it's the only time I really have peace and quiet!).

To say we've been on wild goose chase to help Maggie is an understatement. Our new course of action began when we were in Little Rock earlier this month. At the pool with my sister and our children, I notice another mom approaching me with the now familiar "I'm about to give you advice about your child's neck" look on her face. I dread these moments, because they happen so frequently and I am just tired of being polite when complete strangers tell me that I "should really consider doing physical therapy with Maggie." 

This mom was different though. She went on to tell me that her son had a similar condition and when he was 11 months she saw an "orthospinologist'" while visiting her mom in Florida. And he "fixed' her son. Something about how his skull was out of alignment with his spine. I quickly dismissed her and told her we've had MRIs and CT scans and Maggie is structurally normal. But she insisted I check it out. And I did - immediately on my iPhone!

Basically an orthospinolgist is a specialized chiropractor who focuses in the neck area. I figured either this was a sign from God, or just another dead end. But either way, I had to find out.

So over the past few weeks we have been driving 45 minutes each way to the nearest reputable orthospinologist. His opinion is that in my very emergency c-section the doctor pulled her so hard and fast that her skull was pushed out of its normal position. He said he would classify it was a "traumatic injury." Never heard this reasoning before, but I have to admit, it was compelling. What was even more compelling is the first time we saw him he said with complete sincerity, "Oh yeah, I can fix her."

Most people would jump for joy at this statement. I just kind of chuckled. I've heard it all before and been disappointed so many times, but I am willing to try anything. After all, he can't hurt her. His treatment is very gentle unlike some chiropracters. And since the treatment began, we have seen her moving her neck more. No dramatic changes yet, but I want to give it at least another month or so.

In addition to the orthospinologist, we were referred to a functional neurologist by one of her therapists. I really don't even know how to explain what a functional neurologist is, so you might have to google it. But he's not a medical doctor. He takes a different approach - he looks at the whole picture of what's going on, including sensory and nutritional stuff. 

I know people reading this are probably rolling their eyes. Hey, I'll be the first to admit I am skeptical of non-medical "doctors." But we've been to just about every specialty of medicine and no one has been able to really help us so far. I know deep down that there is something else going on with Maggie that no one has figured out. And I am not going to stop until we figure out what it is.

Anyway, his opinion was very different from the orthospinologist. He thinks Maggie has a chronic condition that has nothing to do with her muscles or bones. Rather he says her head tilt is a neurological issue (which  contradicts everything we have been told so far). The interesting part of it is that he believes the brain can be manipulated to cope. Meaning we could retrain her brain to hold her head straight.

So that's where the whole turning the letter "P" clockwise comes in. He wants us to do this and a few other "exercises" to test her brain's response to certain stimuli. Yes, I have really been doing that to my child. And, yes, Justin thinks I have lost it completely!

So we are going to check back with the functional neurologist this week and see if it turns out to be anything promising. Also up this week is the ENT to talk about Maggie's hearing test, a consult with some new therapists, two visits to the orthospinologist, two PT appointments, two OT appointments, one cranial sacral appointment, a fitting at Scottish Rite for her new nighttime brace, and also a follow up with her neurosurgeon. And, yes, this is a normal week for us. One of my good friends, in trying to explain our situation to an acquaintance, described it as "Lee has more appointments in one week than most moms have in a year." Well put!

Anyways, I am preparing for the neurosurgery appointment with lots of good questions and research. But my mind keeps coming back to how I'm going to explain our recent "alternative treatments" to this world-renowned pediatric neurosurgeon...

Stream of my thoughts..

Maggie is now losing weight. I could not contain my disbelief at the ENT's office the other day when we weighed her. I thought something was wrong with the scale. Surely not, I said. We've been on this strict schedule and she hasn't been vomiting but once a day, and the dietitian assured us she is getting the proper amount of calories every day.  It just doesn't make sense. Is there another issue going on that we haven't discovered?

I look back at pictures from the wonderful month of April when the e-stim was working and her legs actually looked a little chubby. How could I notice that her face is now almost gaunt and her legs are so thin? I want to scream for somebody to help her. I left several messages for the doctor, nurse and dietitian three days ago - do they not see the urgency in this situation? She is tired more than usual and really fussy. She grabs her stomach in pain - but she cannot tell us what is wrong.

Lord, help us. Show me what to do. Should I start making her own formula? The doctor and dietitian say no, but I've heard so many stories of success with vomiting and failure to thrive babies from moms who have done it. At one point do I stop listening to the doctors and try something on my own?

Is it the right thing to go to another city? Is it going to be a big waste of time and money and only leave us more frustrated -as happens to many times - because "renowned" doctors don't want to commit to these strange cases where success might not be in the future. I am sending her records off to the two of the best GI clinics in the country. Lord, if it is your will, lead us to the right doctor who can help Maggie.

I just cannot believe we are back to the this issue, when we should be dealing with her neck issue? But I know that really she make progress anywhere else until she starts gaining weight and her strength back. But, really, what is the deal her neck? Is it ever going to get better?? Every time I look at her I just feel anger and frustration. Not at her, but at myself.

And hearing loss? I just could not believe it when the audiologist told me that the other day at her hearing test. Please, Lord, let it be from fluid in her ears so hopefully it will get better. But how come no one told me she was at risk for hearing loss being on oxygen and antibiotics so long?

Lord, help this child. Heal her. Bless her. Show us your plan for her life. Give me joy like Maggie has joy- and rid me of all bitterness - as I continue on this journey. 

My new checklist...

So we got our new e-stim machine and have been using it twice  a day for 10 days now. And strangely, Maggie has not had the same exciting head-straightening reaction as before. All of us have been stumped. (And when I say "all of us," I mean her nurses, her new OT, her old OT, her PT, Justin, and myself ).

Was is that we had stopped doing the e-stim for so long?? No, that couldn't be it, I told myself. The very first time we did e-stim (see the video on this blog) she had an amazing response. And we had never done it before that.

Was it that we were using the machine incorrectly? No, that wasn't it. We checked our machine, called the company, called her old OT (Ashley) and sent her videos to makes sure, and, yes, we were placing the eletrodes just right.

Another mystery with Maggie. What else is new, right?

But today Ashley (her old OT) called me from Philadelphia and hit me hard with a revelation. Perhaps Maggie is not holding her head up as much because she is weak. She hasn't gained weight in three months due to her severe vomiting. And she is burning many more calories with her now speedy crawling and cruising. Maybe her body is just conserving energy and it's a lot harder for her to hold her neck up? It made total sense to me and I believe it could be a real possibility.

So the bottom line is: Maggie has to gain weight and soon. And we have got to figure out what to do when the Botox wears off. We are seriously considering going to another city for a GI opinion because really there is no one else in Dallas who can help us.

But back to the weight gain. Even though I am a Type-A, organized person, I have rededicated myself to making sure Maggie is on a strict feeding schedule. When we first started having nurses at our house I assumed that typing out Maggie' basic schedule was sufficient. But it was really hard for the nurses to remember to do everything they were supposed to do each day. I guess when it's not your baby, it's hard to remember everything. (Or maybe Maggie is just a very demanding patient!) 

Anyway, I was very lenient about things. For example, if Maggie was supposed to eat at 3, but the nurse didn't get to it until 4, I just nicely shrugged it off and said that we would just push back her 6 o'clock feeding to 7 o'clock. But that would push us back the rest of the night so we ended up trying to feed her more than she could take and she would vomit, thus losing vital calories she needed. Of course, I am mad at myself for not being more strict about it but the only thing I can do is change moving forward, right?

So last week I created a new checklist for the nurses and myself to go by each day. It includes her feedings, but also checklists for stretching, e-stim, joint compressions, and brushing (no, not hair brushing - it's a brush that goes all over her skin to help with her sensory stuff).

We keep this in the front of Maggie's "binder" (which we use throughout the day to log all of her meds) so we can all be accountable to do what needs to be done each day.  Let's face it, it is very easy to "forget" to do the stretching. I mean it's absolutely awful to do. I hate doing it. But it needs to be done. Same with the e-stim. It's hard to fit in thirty minutes of making Maggie be still when she already has to be still five times a day for thirty minutes while she is being fed. But we need to do it.

So here is the checklist for our little, but exhausting, patient:

Oh I hope she starts gaining again soon!!!

Beach Trip 2011

We were able to get away to Florida a few weeks ago and what a blessing that was! Our family had lots of togetherness with nothing much to do - what a welcome change! We were able to see dear friends, too,  - the Lipseys from Jackson, the Yates from Memphis, the Williams from Dallas, and the Arnolds from Memphis, and on the last day, our sweet nephews - Noah, Pierce, and Emerson Phelan. So of course I had to do my now annual (and cheesy!) beach video!

(Click on the box below)

41 Words

Maggie may be struggling with a lot right now, but one thing we are not worried about is her speech. In our three hour appointment at Scottish Rite today I thought it would be fun to write down all the words Maggie is saying. 41 words! Pretty good for a 17 month old(that's technically what she is), especially considering that Mary Lawrence wasn't even saying "mama" at this point in her life. What a blessing!

Airplane
Bye bye
Hi
Mama
Dad
Cow
Moo
Bubble
Pop
Eye
Uh oh
Ball
Balloon
No no
Up
Light
Down
Open
Hold me
Hi baby
Water
Tv
Blue
Bow
I'm cute
Phone
Wee
Jessica "caca"
Blanca
Baby
Help me
Night night
Lolly
Necklace
glasses
Row row row (your boat)
Nemo
What's that?
Mine
Mermaid




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Procedure

Maggie was able to have her Botox in her neck and stomach yesterday. We are so thankful to have that done!. Thank you for praying.

Maggie has not gained weight in three months so if this doesn't help her gain we will have to try other things and try them soon. We had a long talk with the GI doctor expressing how frustrated we are with the constant vomiting and how even more frustrated we are that it's the g-button that is causing the vomiting.  We reminded him that we "gave in" the g-button to make our lives easier, and instead it's made our lives a living nightmare. Our child gags and vomits everything we put in her; her eyes water and her face turns red and she can't breathe well. These episodes go on for 5-6 minutes and it ends with everything within two feet of her covered in vomit. Her mouth must taste horrible, but she refuses to drink anything because she is so scared. (I try to brush her teeth but it's hard to jam a toothbrush in the mouth of a baby who has an oral aversion and gags whenever anything enters her mouth!)

Anyway, the doctor said that even if we took the button out and surgically placed another one somewhere else in her stomach, the vomiting would probably not get better. The reason is because the anatomy of her stomach was forever changed by the initital surgery. The only thing that may help, he said, is a permanent surgical procedure called a Nissen that we have avoided all along because it can cause even more gagging and wretching. But as he said, if she's not gaining weight we have to do something.

This was very discouraging to hear. Basically one surgeon and one surgery has forever changed my daughter and we don't know what her future will look like as far as vomiting and eating. She could vomit and gag for many more years - or the rest of her life - and never be able to eat. We just don't know. I told one friend I am angry and sad at the same time. Maybe if I had spoken up for my daughter in the beginning when I felt like something wasn't right with the button, maybe, just maybe, we'd be in a different situation.

I am not giving up hope just yet. We'd like to get another opinion on the matter. And I am still praying for dramatic change in her vomiting (and neck!). We got our e-stim machine so we will be working on that, too.

Botox tomorrow - hopefully!

Well, both girls have been sick with fevers and colds. So we've had good reasons not to get out in this dreadful Dallas heat!

Maggie is holding up pretty well, but I am not sure they will let her go under anethesia tomorrow unless she gets a lot better. I'm praying for quick healing so she can have this done and we can move forward on our path of getting her neck and reflux better! Praying also for the doctors and nurses to take good care of Maggie tomorrow if she does have the procedure.

Thank you for praying.

Updates/Prayers

I've been wanting to update on Maggie's health issues, but have been hesitant because I'm sure people tire reading of our struggles and needs. But I cling to the hope that God hears and answers our prayers, as He already has showed us so many times, so I pose these updates as prayer requests for our sweet baby:

1. Her neck: We stopped the e-stim two weeks ago after our therapist left. We are waiting to get a prescription for a machine for home use and to see if insurance will provide one. I know we will get one somehow, but the discouraging news is that ever since we stopped the e-stim Maggie has ceased holding her head up on her own. I'm not sure what this means long term, but I have been deeply discouraged. I just never thought she would backtrack so fast. Please pray that she would start holding her head up again and permanently. Every baby/toddler I see I can't help but look with fascination at how they hold their heads up and then be so discouraged that mine can't do the same.

2. Vomiting - it's unbelievably bad and has been for a while. I just have gotten used to it, but a few weeks ago I realized (once again) that it's not normal for a 23 pound baby to not be able to hold down 4 ounces of milk. It's like a geyser of vomit is always waiting inside Maggie and anything will set it off: crawling, laughing, crying. The sad thing is she actually is showing interest in big people food (she's done with purees). But if we try to give her a saltine or watermelon or anything solid, as soon as she swallows it she gags and throws up all her milk. Thus we are faced with a conundrum: We want to encourage her to eat but if we do, she will vomit all the time and lose weight. Bottom line: the child will never be able to eat unless we get the vomiting figured out, and her GI can't seem to. I still think it's the placement of the button and keep asking if we need to
"start over" with a new incision for the button, but still have been given the "let's wait and see" answer.

3. Botox- Part of the "wait and see" answer involves another Botox round in her stomach and neck on June 20th. Please pray for her not get sick this week so she can go under anesthesia for the Botox. It has been a complete nightmare getting this thing scheduled with the two doctors so I just want to get it over with already. Please pray for no complications and for it to help her neck and vomiting and not hurt her.

4. Doctors- I am questioning again if we need to seek out other opinions. Frankly, I'm so exhausted and burned out. I don't want to drag her to another doctor or worse, another city, to be told the same things we've already been told. I'm praying for wisdom on this decision.

5. Protection- Last night about 10 pm I heard Maggie moaning in her bed. It's not abnormal for her to moan until she can soothe herself back to sleep. But something moved me to glance at the video monitor. There she was sitting up, eyes closed, with the tubing from her feeding pump wrapped around her throat twice. I ran in there and, thankfully, she was fine. It wasn't tightly wrapped around her throat to the point where she couldn't breathe. But if she had laid back down, she wouldn't have had enough slack and wold have suffocated. Praise to God that she didn't..

Yes, last night one of my biggest fears came true. This is why I haven't slept well in over a year- there is nothing safe about having a cord in your baby's bed. But she has to have it in order to live. She gets most of her calories during her continuous nighttime feed. And taping it down against the bed doesn't solve the problem because she moves around and could yank out her button, or worse, get caught on the even shorter tubing. Please pray for her safety and again for this vomiting issue to be resolved so we don't have to do the continuous feed at night. (I sure hope my mom doesn't read this post... she'll never sleep again either!)

Thank you for keeping us in your prayers as always. I know God will lead us to do the best thing for our daughter- I just need patience in getting there...




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Pride, Denial, and Some Help from Above

"...your Father knows what you need before you ask him." Matthew 6:8

Having a child with medical problems or developmental delays forces one to open up so much of their otherwise private life and depend on nearly complete strangers for the well-being of their child (doctors, nurses, and therapists, etc). This was extremely hard for me in the beginning. When we brought Maggie home from the hospital, several of my friends asked me if I was going to have someone helping me with Maggie. I pondered the idea of a baby nurse, but besides being so expensive I honestly did not want another person intruding into our lives. I was so tired of doctors and nurses hounding us with instructions on how to care for our baby. I was so tired of people just around all of the time. I just wanted privacy and I wanted to do it myself.

So for those first cold months of 2010 after Maggie came home from the NICU, our family hardly left the house. And I so enjoyed it! We got in a routine and life seemed pretty good. But then Maggie stopped eating, and her torticollis became more pronounced as she grew. When the threat of RSV passed in April, the doctor ordered us to start the full range of therapies - speech, occupation, and physical therapy.

Soon I was racing back and forth to doctor appointments and therapy appointments and trying to do all the therapy "homework" at home. It was quite normal for us to have 2-3 appointments a day. Soon our quiet life holed up in our tiny house was turned upside down. I became a slave to helping my baby overcome her problems. And it consumed the entire family.

I just never in a million years imagined that she would have this hard of a time. (Can you say denial?) No question I have a skewed perspective. I remember when Maggie was about six months old we were discussing her issues with her pediatrician and he said, "I don't know why, but Maggie is just having a harder time than most 29 weekers." I couldn't believe my ears. Here I was thinking she was doing great for what she had been through. I mean, she was alive, wasn't she? And for someone who was not supposed to have any lungs, she only stayed on the ventilator for 10 days and was no longer on oxygen at six months of age. I thought that meant she was doing pretty darn well.

But now I realize now that most 29 weekers do a lot better than her. I have seen 24 and 25 weekers do better than her in their first year of life, and that is piercing to the heart of a mother who watches her child struggle. But I have to remind myself that those babies had the life-enhancing amniotic fluid throughout their time in the womb, however short that was. Maggie did not. And because of the lack of research, we will never know what kind of impact that had on her start at life.

So it was at our year checkup in November that I officially broke down (not on purpose) in front of our pediatrician about how I just felt so overwhelmed with the constant medical issues. It was then that he suggested we start nursing care for Maggie. Of course, I wouldn't hear of it at first. I didn't want someone in my house. I didn't want people to misjudge Maggie if she had a nurse following her around all of the time. I wanted her to be as normal as possible.

A few months went by though, and life seemed to only be getting harder and not "normal" as I defined it. So we decided to pursue the nursing thing and see if it would help Maggie and me. We went through the tedious process of getting it all approved and finally we started trying different nurses in February. Unfortunately, I kept sending them home because none of them were up to my standards. We would find a an okay nurse and I would spend the first few days teaching her what to do with Maggie (medications, feeding 4-5 times a day through tube, feeding 4 times in high chair, therapy exercises in between). And then she would quit the next day. This happened 5 or 6 times in a row and I started getting offended - I mean our life is not that hard, is it?

Just when I started to write off home health care altogether, a sweet nurse named Jessica showed up. She was young and sweet and instantly loved Maggie. She promised me in the beginning that if she was a good fit that she would not leave us. And she hasn't! Finally after a month of having her come 3 -4 days per week I feel some relief. I feel like I am not suffocating under the pressure of trying to do Maggie's routine all by myself. I am not always at my wit's end and no longer short with my husband (okay, I still am sometimes, but not in every conversation!).

The nice thing about nursing care is that I am still with Maggie all of the time, but my day is not consumed with being, well, a nurse! I can sit down and eat lunch with Mary Lawrence while Jessica feeds Maggie. It's amazing when I realize how much time Jessica spends on Maggie's morning routine of feeding, bath (due to overnight vomit), changing linens, and medications- I wonder: what did Mary Lawrence do for those first two hours of each day when I was doing all of that?

So one more thing I regret about this past year: not putting my pride away sooner so I could get help and give Mary Lawrence the attention she needs. I also can't help thinking that if I had started nursing help sooner maybe Maggie would have been doing better, too. I have realized that nursing care (or any kind of help) does not mean your child will never be independent. It just means they might need a little help getting there sooner.

Which brings me back to my original point about trusting what otherwise would be strangers for the betterment of your child. We have gone through several doctors, nurses and therapists, trying to find the perfect ones for Maggie. Finding the right therapists has been the hardest. We'll find a great and then be saddened when we learn three months later she's leaving (turnover is high in these therapy places). It's hard not to question God on these things. Consistency, please! I want to plead.

But I have learned that this journey of ours is like a relay race. And Maggie is the baton. God has seen to it that she is being passed along to a different health-care provider at just the right time - either when it seems she has hit a wall in her development or the therapist has nothing else to offer. It's hard to move on, but every time it's been for the betterment of Maggie.

Ashley, Maggie's Occupational Therapist, is our latest therapist to move on. We are so sad about it because she has been a godsend in every way. She took over last fall when Maggie's second OT quit, and has pushed Maggie so much. It was her goal to have Maggie sitting up by mid-January (which I couldn't imagine, but Maggie did!). And it was her idea to try the e-stim and even found a doctor to write a prescription for her so we could try it. No one thought it would make a difference, but boy were they wrong! Ashley is moving on to one of the best children's hospitals in the country, but said that Maggie will probably be her biggest accomplishment for the rest of her career. And she's only 25. Is that not incredible?

So of course I sobbed and sobbed as we said good-bye last week. Mary Lawrence cried, too. When you depend so much on someone for your child's well-being and future, you feel like your heart is being ripped in two when they move away.

You see, while this past year has been the hardest of my life I have no doubt seen God's hand in all of it. How perfectly He has selected all of these therapists and doctors and nurses to help Maggie in various ways. How he has taught me to accept help with thanks and grace, and not to be ashamed of it. How he has held our family together in some of the most trying times. How he as humbled me again and again when he has brought complete strangers to my skeptical door, and made them into lifelong friends - who have changed Maggie's life (and mine!) for the better.

(Ashley and Maggie )

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!

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:

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."
Click.

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.

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...

Look Who's Crawling...

I have to admit, there were times last year when I really couldn't imagine Maggie crawling or walking. But alas, here she is starting to crawl...praise God for what He is doing in her development!

Hope for Today

Sorry for the bad attitude yesterday! I'm over it now. I think it just discouraging to work so hard to help my child's issue and it still looks so bad that people keep pointing it out to me. It's as if everything we have done over the past year has been a useless, waste of time.

And it's just a reminder that Maggie looks different than other children. Through my eyes she's completely normal and beautiful, but a stranger off the street sees her differently. I'm not going to lie, that's hard for a mother.

I will say that God has brought some words of encouragement from several people this week and that has really uplifted me. One person was from England! She found my blog through the PPROM list serve that I'm on and told me that her three year old son had a very similar situation as Maggie. And I've never met anyone with a very similar situation as Maggie! She prom'd early too and her son miraculously lived, but suffered severe torticollis from being in the womb with no fluid. She said her son's head is just now getting straight at 3 years old after several Botox injections and lots of therapy. Really her email was such a God-sent thing! There is hope that Mags can get better!



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Vent

If one more person stops me in public and "helpfully" informs me that my baby's neck looks uncomfortable in the stroller and I should fix it, I literally am going to lose it....seriously. Maggie was screaming hysterically as we stroll into this medical complex and this lady hails me over to tell me this. Like I didn't realize Maggie's ear is firmly resting on her shoulder....Lord, please give me patience.



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Vintage Carnival Birthday Party

We had a good, old-fashioned backyard party for Mary Lawrence on Saturday- sweet friends helped Mary Lawrence celebrate on the most beautiful Spring day. I was a little scared when Mary Lawrence announced a few weeks before that she wanted a "red" birthday party (whatever that means?!) but I think she absolutely loved everything about it....

Mary Lawrence's 4th Birthday

(Click on picture if you want to see slideshow)

ML's 4th birthday

Yesterday was Mary Lawrence's 4th birthday and I think her best present was this (besides Polly Pocket's pool, of course):

Now she doesn't chew or swallow but she is interested and that is a HUGE step. A speech therapist told me children with feeding issues usually start out eating Cheetos or Doritos due their strong taste. I don't care if all she eats is processed junk food the rest of her life - as long as she eats someday!!

And of course we all know where the girls get their love of cheese from...

We took ML to Mi Cocina for her birthday and then off to the movies...

It was a great day for a special girl!

Peek a Boo

Well we've had a nice, low key weekend. We took Maggie to her very first 'friend' birthday party on Saturday - a neighbor's child down the street turned one and Maggie had so much fun watching all the children play. We tried to give her birthday cake and ice cream, but she refused and spit it from her lips. (Seriously, what child does not like ice cream?!)

Anyways, I had to post this video - peek a boo is Maggie's favorite thing to do:

Oops...

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