Update

Maggie is getting used to her brace, but certainly doesn't love it and often asks us to "take off." It's hard to resist her pitiful request, but we are doing our best to leave it on 24/7. We do take it off for therapy, which we are doing everyday now. Her therapists have noticed a good difference in her range of motion which is good.

Maggie is not back to her normal self after surgery and a bout with the stomach bug, but hopefully she will be soon! She is definitely walking more steps and having better balance with the brace which is great.

We go back to Atlanta in 5 weeks to check in with both doctors and see if they think the brace alone will retrain her or if she needs further treatments or surgeries. I definitely have accepted that this will probably be a long process, which is hard to digest when all I want is to be done with all this! But at the same time I'm so thankful we are starting when she's two years old and with wonderful doctors.

Thank you for all your prayers these past few weeks.


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How wonderful it felt to leave the hospital today and be finished with something we had anticipated for so long! Maggie is adjusting to her new brace that has to be worn 24/7. But doing well otherwise.

She is so brave and sweet. I'll never forget her sitting up in the hospital bed, hands gripping the sides, as they rolled her down the hall into the OR. She has done it so many times; she knew the drill....

What a long and beautiful two years it has been. Thank you to our faithful friends and prayer warriors all along the way - we have so much to celebrate today!


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Location:Happy 2nd Birthday!

Surgery update

After a five hour delay, Maggie had her surgery and everything went well. The doctor said her muscle was so overtaken with scar tissue - probably from how she was positioned in the womb with no fluid- that he said all the PT and OT in the world wouldn't have helped. So the surgery was definitely necessary.

The craniofacial surgeon and the new neurosurgeon we saw yesterday both agree this might not fix her completely. They saw a tiny fracture in her neck that is probably contributing to the problem as well that might require further surgery. Hopefully not though! For now they are making a collar/brace for her to retrain her neck to grow straight. She'll have to wear it all the time. And we will come back to Atlanta for further evaluation in a month.

We feel like we've finally found the right doctors and are so hopeful that we will see a dramatic difference in the next few days. Thank you all for praying!

Love

Lee


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Surgery today!

We are in Atlanta and thankfully Maggie was cleared for surgery yesterday by the neurosurgeon. I thought this day would never come! Her surgery is at 2 pm Eastern. Praying for the surgeon to do a precise and wonderful job, for no complications, and that we see a dramatic improvement in Maggie's range of motion.




From our little pre- birthday celebration Marcia Gaddis (in whose home we are staying) did last night for Maggie and her daughter, Blair.



Trick or Treating in Little Rock.




How fun we got to see cousin Wesley in Atlanta.

Nov 3rd surgery

Maggie's surgery is scheduled for November 3rd in Atlanta. I am so excited but also so nervous as this is the last "thing" that could supposedly help her neck. And there's no consensus that it will. But most agree that we have to try something before it gets worse and is forever contracted and Justin and I are on board with that.

Maggie is no doubt a mysterious medical case- things with her are not as clearcut as I wish they were. I got a call from the surgeon's assistant today that he wants us to see a neurosurgeon in Atlanta before he does the surgery. This will be the 4th neurosurgeon she's seen - which is a little crazy if you think about. I know he wants to be 100% sure before he performs the surgery that nothing is going on neurologically that would cause her neck issues. I'm glad he's thorough, but of course I'm a little unnerved that he wasn't satisfied with the reports from the neurosurgeons here...

Every time I think about it I'm praying for this surgery. I don't want Maggie to struggle with this anymore, to be in pain, and or to get strange looks when we're out in public. I want to know if she can swallow and eat better with her neck straight. I want her to have a normal childhood as possible.

We need prayers for protection and healing, for the surgeon's nimble hands, and the anesthesiologist's good judgement, and for strength for Justin and me. We are praying that she doesn't get sick before the surgery, and that it will go on as planned on November 3rd. And lastly, for a quick and remarkable recovery for Maggie. Her birthday is the day after surgery and we have big plans to celebrate the wonderful results in her hospital room!

Please and thank you for your prayers, friends.

-

Another walking video...

See how far she's come in a week!

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First steps

Okay this is not that exciting for moms of normally developing children. But for a child that is constantly off balance and dizzy, not to mention unbelievably tight in her legs, this is pretty huge so I had to post:)



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Braces and food

Maggie is getting leg braces to help with her walking since her legs are still tight related to my pregnancy. She was so good getting casted in the office today...













I don't know why but Maggie is losing weight again. The hard thing about having a g-tube child is figuring out how many calories they are burning so you make sure to give them enough through their tube. It's a mystery to us that she's losing again because she's not throwing up....but I'm hoping it's because she is more active....

Right now I'm trying to figure out how to increase the calories of her formula without making too much volume or making it too hard to digest. Ive tried adding whole milk and even pure whipping cream and both just ended up tearing up her sensitive stomach. Increased olive oil just goes right through her and makes her have a lot of dirty diapers. It really is exhausting to constantly think about something related to your child's health, especially when it pertains to weight. Sometimes I just want to throw a hostess cupcake in the blender, but that'd probably make her sick, too! Oh well, I'll keep trying to find the perfect ingredient to get a little chub on my sweet baby...

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Rustic French "Bebe" Shower Luncheon

I had the honor of hosting a baby shower this morning for my friend Carrie Garcia. After traveling this week, I knew that I probably coulldn't host a shower at my home (and not be totally stressed out about it!). So I decided to do a baby shower luncheon. I mean, nothing goes better with pregnancy than absolutely divine food, right?! It was at my favorite neighborhood restaurant called Rise No 1, which I describe as Rustic French. Carrie and J.R. don't know the sex of their baby, so I went with greens and shades of lavender to go with our rustic French countryside theme.

What a beautiful day for a shower!

Invitation by Original Ink Designs

You can't try too hard when you are doing flowers for a party like this....I love the "just picked" look

I brought some of the girls' silver pieces to make it feel like a baby shower, and not a bridal shower!

Our menu

Mmmm...souffles!

After our decadent dessert souffles I didn't want to do cookies or candy for favors, so I did my favorite lavendar and honey hand creme from Anthropologie.

What a fun group!

Carrie and me

My little helper!

I just couldn't resist taking this photo...she dressed herself today, of course.

Updates

The MRI results came back yesterday after a week of painful waiting. Thankfully there was no change from last year. Praise God for that great news.

We also had a good trip to Atlanta. We met with a renowned surgeon and really liked what he had to say. He didn't promise me he could cure her 100% (as so many have wrongly said before), but he said we've done everything else for maggie we possibly could. And surgery is really the only option left. He felt for sure Maggie's severity and unique type of torticollis has baffled doctors because it is due to the rare condition I had during pregnancy.

Now we have some serious praying to do. Unfortunately nothing is ever clear cut with Maggie, and rarely do two doctors agree on what to do. So it makes decision- making very difficult, especially when we've had two surgeries gone wrong in our family. But I had a good feeling about this surgeon, and feel like we may just be on the right path, medically speaking. Praying that we are...

Justin and I are so thankful to the Gaddis family who shuttled Maggie and I around Atlanta and loved and fed us in between. What a treat for us both!

Thank you for praying this week and continuing to pray...




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Tomorrow Maggie is undergoing another MRI. The neurosugeon wants to look for anything else on her brain that might be affecting her vision, thus her head tilt. I almost hope that he finds something that would explain things...nothing bad, just some explanation. We have seen two opthamologists and she's had one MRI a year ago, and all eye probelms have been ruled out. So I'm not sure what else this would tell the doctor. But we are optimistic for answers.

Next week is another big step in our journey. Maggie and I are flying to Atlanta to see a specialist for a second opinion. Or maybe I should say our seventeenth opinion! I have done a lot of research on where to go in the country so am praying we get some answers in Atlanta. I always say I don't want to get my hopes up, but I always do....

Other than that, Maggie is doing really well! She stood by herself for three seconds yesterday, which she thought was hysterical. She is in that stage where she wants me to walk her around the house with my hands, but is scared if I let go with one hand.

Also some exciting news....

Maggie started Mother's Day Out! Now that she is almost two and her lungs are stronger, her doctor said she can go to Mother's Day Out and Church Nursery. In fact, he said she needed to go. She has been so isolated with her Chronic Lung Disease for so long. I remember when we left the NICU and they told me not to take her out for two winters. They weren't kidding! Now it's time for her to be around other children her age. The only caveat is that her nurse (Jessica) needs to go with her to do the feedings and medications. Thankfully the school agreed to this which we are so thankful for!

In addition to MDO, Maggie is also one of four toddlers in a feeding therapy school on Fridays. I go with her to this school. While Maggie and the other children get to "play" with the graduate students assigened to them, the parents have their own their little "school" where we learn about ways to overcome our child's feeding issues. What a blessing that a spot opened up for Maggie in this program and that her vomiting stopped so we could acutally go!

Another good bit of news is that the olive oil and avocados are doing their job. Maggie is now 24 pounds! We are so thankful to God for this huge improvement and for leading me to make this homemade formula. It has made such a difference! She actually looks healthier and fuller to me. And that weight gain will help in fighting any virues she may pick up at school (although Jessica says she is "pureling" like crazy at school!).

Here are some more pictures as of late:

We have a new princess in the house

Mary Lawrence started a new school

She was very confident walking down the hallway the first day...

But this was her reaction when we got to her classrom (aka she refused to go in!)

Thankfully her teacher lovingly welcomed her and she warmed up quickly. That is, after she announced to the class, "My name is not Mary Lawrence, it's Lawrence, like my grandmother."

So now at school, dance and soccer she has told everyone to call her "Lawrence".

By the way, after hating soccer last year, she loved her first practice and game this year.

Justin is relieved!

That's all for now. Other than please pray all goes well with anethesia tomorrow for the MRI.

Just playing

Maggie is doing great after a week of recovering from her muscle biopsy. She stopped eating temporarily but is back on track eating okra, Funions and jalapeño sticks...


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Surgery Today

Maggie was under anesthesia for three hours today having a hearing test, tubes put in, and a muscle biopsy. I was under the impression that the muscle biopsy was a tiny incision, but no, Maggie has a 3 inch incision on her thigh (which is like her whole thigh!) Poor baby is not feeling well tonight. I've been holding her all day, and am now rocking her while listening to old hymns on my phone and typing this in the dark.

I wanted to thank everyone for the prayers. I wanted to especially thank my dear friends who are always so supportive on days like this. I am very aware that everyone has their own struggles and issues with their children. Just because my child's issues are more pungent doesn't mean they are more important than someone else's. I know we get a lot of attention, and I hope I never come across as not caring about others as they have cared for me, because I deeply do.





In the waiting room at 5:50 this morning.

PS: In the past we never worried about Maggie being hungry after going without food all night (for anesthesia). She just never cared. Today, however, she saw the veggie puffs in my bag and started screaming hysterically for "cheetos" and "water"! It was so pitiful, yes, but it also made me happy that she is feeling hunger and wants to eat!

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New Developments

I have been so excited about the progress we've made with the GI issues that I've neglected the non-progress we've made with her neck. Here is a recap of all the recent doctor opinions:

Functional Neurologist (Natural Medicine doctor) - He thinks Maggie has a condition called dystonia, which is a neurological condition in which muscles are contorted. Obviously, this is just one opinion and I'm not sure I agree with it. I asked about this last fall at Scottish Rite and the response from one doctor was "dystonia rarely happens in newborns and never in their necks." But this doctor is convinced this is what she has and, even though dystonia is permanent, thinks we can use neurological exercises to retrain or manipulate the brain to hold her head up.

Neurosurgeon - He wants to do another MRI to check for something that would affect her vision, thus her balance. I asked him about dystonia and he doesn't think it's a crazy idea at all. He's going to talk to some other colleagues around the country that specialize in movement disorders like that. Her MRI is scheduled in September.

ENT- Because Maggie has had fluid in her ears several times and has mild hearing loss, the ENT doctor wants to go ahead and put tubes in.The surgery is scheduled for Tuesday. Normally I don't think doctors would be this aggressive with their treatment for fluid, but she thinks we need to do everything possible to help with Maggie's equilibrium. If Maggie has a lot of fluid that can cause dizziness when she tries to hold her head up, and ear tubes help drain that fluid. As she said, we want to do anything we can do to help Maggie's vestibular system get in balance. She is also going to do a more accurate hearing test while under anesthesia (don't ask me how they check hearing while you're asleep but they can!).

Geneticist- I handed her a list of genetic disorders that could cause some type of dystonia or muscle issues. disorders. She discounted most of them, but she did draw Maggie's blood to test for a type of dystonia that's genetic. She also gave me some info on dystonia studies going on around the country that could lead to some expert doctors. This doctor doesn't think it Maggie has dystonia but thinks it's worth checking out. She also ordered a muscle biopsy during her ear tube surgery on Tuesday since Maggie has never had one. (doctors don't like to do muscle biopsies on babies unless absolutely necessary but at this point I think it's time). The biopsy would rule out any dystrophies or other muscle disorders. She doesn't think Maggie has any for the mere fact that Maggie only has muscle weakness in one area (her neck) and it's been consistent since birth. But we're testing to rule everything out.

Therapy - We had a new team of therapists come to our house to evaluate Maggie a few weeks ago (we are always seeking second opinions!). One of the therapists called me afterward and said that she was very concerned that Maggie was stressed out. In fact, she said she had never seen a baby so stressed. This was a little offensive to me as a mother. Nonetheless, I listened intently as she recommended that we cease all therapies for a month and stop all stretching at home. She said that we are not making huge progress right now anyway, and a month could just give her a little break.

In the past I've had other moms of specials needs children say to me, "You'll get to the point where you don't need to do therapy five times a week because it's just too much for the whole family, including the child." I knew we would get to that point, but thought it would be after we figured out what her diagnosis was and how we were going to to treat it effectively.

So it scared me to take a month off. A month of precious time. But after much thought, Justin and I decided that it would be a good idea for Maggie and for her big sister. Though convenient, it's very  intrusive for Mary Lawrence to have someone come into her space four times a week and take over the den floor and mess with her baby sister. I can't count the number of times have I had to quiet Mary Lawrence as she screamed at the therapists, "Stop hurting my sister!" Besides, Mary Lawrence has been showing signs of stress, too. Those of you who have followed the blog remember how she deals with stress:).

I did like these therapists, though. And one of the things I am praying for is that they can help us get a brace made for Maggie to wear during the day. All the torture devices made for her so far don't allow for her to move and crawl around. (And it's more important for her to develop normally with a tilted neck than force her in a half-body brace where she can't move with a straight neck.) But Maggie's brain definitely needs to be retrained to know what is "normal" and the only way that will happen is if someone can make a daytime brace orcollar that will hold hear head straight and let her move around. (Any engineers out there up for a challenge?)

Funny that I have been trying to "make" her some kind of contraption for months now. I'd go to JoAnn's, buy some foamy materials and try to put together something. But anything I make she'll just rips off. Recently I asked my friend who's in the design business for some foam rubber from an upholsterer.I am going to cut out something like a collar, and just see if it will help at all!

The good news is these therapists have an orthotics person who may be able to help. Please pray can for this if you can. I know Maggie is uncomfortable tilted all of the time. And the older she gets, the harder this habit is going to break (if it's a habit at all, depending on how the theories I mentioned in the beginning pan out)

The therapist also said that we are doing so many therapists - OT, PT, ST, Cranial, Chiropractor, and Functional Neurologist - that it's hard to know what's really working and what could be negating the impact of another. They suggested that we only do one at a time to see what's really working.  it was a compelling argument for sure. And Justin and I are still pondering what to do exactly. I feel like we haven't given the chiropractor enough time to do his job, and same for the other guy. I want fast results, but maybe we are going about it all wrong. Oh, Lord, how we need your guidance and help!

Thank you for praying for Maggie's proceduers go well on Tuesday and that she does okay under anethesia.


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Cheetos, Funions, and Saltines

Another few days have passed and she's still not throwing up and still wants to eat. Nothing sweet, nothing soft, Maggie prefers salty and crunchy. Her "go to" foods right now are Cheetos, Crackers, Veggie Chips, and Funions. Hilarious, I know. We've tried cooked carrots and green beans but she said "yucky" and started pointing to her tongue in disgust. Oh well. At least I can cheat and pump her full of spinach and peas! (But if anyone has any other similar foods to try, please let me know- remember developmentally she has the mouth of an eight month old).

Her dietician did approve the formula (only after saying she can't endorse homemade formulas and wouldn't trust most parents to do it). But amazingly her GI doctor said he was ecstatic about it and asked for the recipe for his other patients! He said he wished we had tried it sooner....crazy, huh?

I had several people email me after my last post and comment that it looks like she holds her head straight when she swallows and, yes, that's right! Her brain knows that in order to be an efficient swallower, she needs to have a straightened throat.

I have some updates on the progress of her neck which I will post later, but for now here's one more video for all of Maggie's cheerleaders who love this stuff as much as I do. In the video Maggie is eating a cheeto and ML a Fun Dip (not the model of good mothering here!). And if you listen closely you can hear her say "eating," "yummy," and "cheese":

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Answered Prayer

Maggie has been doing so well on her homemade formula. She is no longer gagging, and rarely throws up. If she does, she's able to "recover" so to speak. Before we had to feed her six ounces of formula over two hours- that's not even a full baby bottle. Now we can feed her that same amount in 15 minutes. I cannot express how huge this development is!

Furthermore, we have seen an amazing transformation in a child who just a week ago refused ALL foods, to a child who is now actually interested in eating. Her mouth is so weak and underdeveloped from a year of not using it, so she's not swallowing much of the food she puts in her mouth. But as you can see from the video below, when we offered her mashed up lasagna last night she totally understood what she was supposed to do with it. And was actually trying to self-feed!

I feel like we've made six months of feeding therapy gain in one week. It surely has to do with the fact that she must feel so much better with real food in her stomach. And I assume the homemade formula has made a huge difference in her GERD. Honestly, I am dumfounded at this dramatic change and can only give thanks for this answered prayer.

What a joy it was so see Mary Lawrence's reaction last night during our usual "Maggie" prayers to 'heal her neck and help her stop throwing up.' I opened my eyes and said, "Mary Lawrence, God has answered one of our prayers: Maggie's not throwing up anymore! See, God really does answer our prayers!" Her eyes got really big as she nodded her head in disbelief and stared at the ceiling. I could see her little mind trying to grasp our big God. Then she just looked at me with the biggest smile and started giggling. For the first time she was experiencing the wonder of our magnificent Creator, who answers even the prayers of a four year old little girl. It was a moment I'll never forget.

Thank you to everyone for your prayers, too. Enjoy!:

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Food Rebellion

I definitely have turned a over a new leaf. I am a rule follower. When it comes to Maggie's health, I have done exactly as the doctors have told me to do. Up until recently that is. First the alternative doctors, now her food. Let me explain:

Maggie doesn't eat anything by mouth, so she gets all nutrition through her feeding tube. Since her g-button was placed last September, she has been on every kind of "enteral" formula (which means it can go through the tiny hole in her stomach). We have tried everything from the mildest, broken down formulas all the way up to the more common formulas like Pediasure. But none have seemed to make much of a difference in her vomiting. I never thought it was her formula causing vomiting, but we still went through the process of ruling it out.

When Jessica (her nurse) started working for us, she told me that she's seen a lot of moms make their children's feeding tube formula. I thought it was an interesting fact, but it never crossed my mind that I would do something like that. Making your own g-tube formula was  for the "au naturel" hippie types who balk at the idea of putting a commercially made formula into their babies, right?!

Don't get me wrong. I made most of Mary Lawrence's baby fruits and veggies. But not because I was a super nutritional freak. It was more because it made me feel like I was doing something right amidst of all the self-doubt of being a new mom.  (Plus, back then I actually had time to chop, blend, and freeze!)

As time went on, though, I started thinking about more making Maggie's formula. I mean, would a pediatrician tell parents it's okay for their toddler to eat nothing but pediasure? Absolutely not. So why is it okay for tube-fed children?

I know they have their reasons - it can clog the tube and the doctors can't calculate the exact nutritional contents as easily as they can with commercially made formula. But still, it just doesn't seem good to never have anything fresh in your stomach. Think about it - all she ever has in her stomach is processed formula sloshing around. Nothing thick, full, or dense to weigh it down and, well, keep it from coming back up.

So we're at feeding therapy a few weeks ago and talking about foods she likes to put in her mouth and things she doesn't. I told her that Maggie hates anything sweet and gags when we give her fruit or milkshakes or Popsicles. But she loves to suck on sour and spicy things. Why? Well we think it is because all she's ever had in her stomach -thus all she ever throws up -is her sweet-tasting vanilla formula. (I'm so sick of it that I want to gag when I open a can!) So no wonder she acts like sweet fruits taste gross; everything she ever throws up is sweet. She does, however, like to suck on pickles, pickled okra, jalapeno ranch dressing and wasabi peas - not kidding about the last one.

Her feeding therapist then suggested we try making her formula, and commented that a lot of her patients are on homemade formula. She said that when a child on homemade formula burps (this is gross, sorry), they learn what real foods tasted like and that is good from a feeding therapy standpoint. "But the doctors tell you not to do that," I countered. It's then that she said something that hit me like a ton of bricks, "Well. sometimes, you have to take the reigns of your child's health and make the decision you think is best for her." Hmmm. .

So I went home and ordered some literature on homemade formula. And I poured over it for weeks. It was all very overwhelming for a non-math person. You have to calculate everything perfectly to make sure they are getting their exact nutritional needs for their weight and age. They can't get too much of a vitamin or too little protein (which makes me think of other toddlers that eat nothing but goldfish and chicken nuggets but that's another question for another day!)  And there is not one magic formula that works for every child, so you kind of have to figure it out on your own. This stresses me out big time. I am a Type A person: if someone gives me a plan, I'll follow it exactly. But there is no set plan, and with homemade formula it's kind of trial and error with what agrees with your child.

The exciting part was that everything I read about blended formula from moms is that their child's reflux got so much better once they were on it, and some children actually showed interest in eating.  I also read stories of incredible weight gain and overall changes in happiness. It all sounded so great! But still, did I have the courage to take this step??? (I am a wuss, I know!) I mean, what if her tube clogged and I had to go sheepishly to the GI clinic and explain. Or what if it made her sick and she threw up peas and pureed turkey all over everything.

But this past weekend I hit a point where I couldn't take the vomiting any more. So I ventured off to Whole Foods and got everything I needed to make my first "concoction." Her nurse offered to cook the organic chicken in the Crock Pot overnight. The next morning we attempted to puree the chicken in the food processor. We gagged so much that we almost had to stop the process. (Tip: never grind up meat at breakfast time). Unfortunately we couldn't puree the meat enough to put in her tube, so I'll have to settle for jarred baby meat. (Oh darn). But the good news is that we were able to blend up the other ingredients into a formula that was thin enough to go through her tube. The first time we put it through her tube, Jessica and I held our breath we were so nervous to see what would happened. But I have to say, there was something so satisfying about putting real food into my child's stomach!

So how did Mags react to it? Well, since we started the homemade formula three days ago she has only thrown up once. That is very good compared to our most recent average of 2-3 episodes a day. Maybe this will change everything....

Here are some pictures of my food "rebellion":

Some of our ingredients this first go round: Omega oil, soy milk, olive oil, avocado, real fruit juice.

About to blend it all up!

Finished product: Four 8 ounce servings out in containers I found in the Target dollar bins. So satisfying.

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!!!