Tuesday, August 30, 2011

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 jalapeƱo sticks...

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Tuesday, August 16, 2011

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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Sunday, August 14, 2011

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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Thursday, August 11, 2011

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":

YouTube Video

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Saturday, August 6, 2011

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!:

YouTube Video

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Tuesday, August 2, 2011

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 thatMaking 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.