A Day in the Life

I know when I was new to the special needs thing, I was scared. I had no information about what my day-to-day was going to be like. I felt like I couldn't make plans for myself because I had no schedule, no prediction of what each day was going to bring. This post is for all you new moms and dads to the special needs lifestyle. Obviously, it's different for everybody. But finding blog posts that described the day-to-day with the feeding tube, or hypotonia, or healing from surgery, was so helpful. So I've decided to do a series of posts that detail our schedule, and how it changes after surgery or a new medication or what have you.

On a regular day, this is the schedule, more or less.

7:00

I wake up first. Always. The hour I have to myself, and the hour I have just with Jeff, are so wonderful. It's a chance to recharge, to breathe, to get ready for the day without worrying about what Maisie is doing right at that moment. I would recommend that EVERY mom set this time aside for herself, not just special needs moms.

8:00

Jeff wakes up. Usually by this time I have coffee ready for him and sometimes muffins or pancakes or something. We sit and eat and talk. With a little girl who demands so much time, it is super important to us to have some time that is just us.

9:00

I go get Maisie and Jeff leaves for work. Very occasionally, she wakes up before nine, but I always wait to go in there. The door is locked from the outside. I know. What kind of parent locks their child up at night?! This one. This is a system that works for us. It creates a mommy boundary. Maisie knows that mommy is left alone in the morning unless there is an emergency. Our house is really small, and I know immediately if she's in trouble because I have a video monitor and I can hear her. I also think this deliberate separation, even for just a few minutes, helps keep Maisie from getting separation anxiety to a really severe degree. Special needs kids often do because they spend so much time with their mothers and go through so much pain and tribulation.

9:30

Hopefully by this time Maisie is eating breakfast. For her, "eating breakfast" lately means getting a feed through the tube while picking at bananas, graham crackers, oatmeal, Cheerios, etc. Because her weight is still so low (24 lbs 4 oz) she eats mostly her prescription formula through the tube. When she hits 25 pounds, I will hopefully be able to start giving her a blenderized diet, which is more like smoothies.

10:00

On Wednesdays and Fridays, this is physical therapy time. On Mondays and Thursdays we try to do something social or educational. There's an excellent children's museum twenty minutes away that we go to fairly regularly. Sometimes we go to the library. Sometimes we stay home and bake cookies (which means stander time in the kitchen with a bowl and spoon) or have friends over. Right now, Kaitlynn is still around (nothing's wrong, she's just taking time off) so we see her fairly regularly. 

1:00

Lunchtime. I try to eat my lunch at the same time that Maisie does just to drive home idea that what she calls "tubie time" is eating, particularly on days when she doesn't manage to eat anything herself.

2:00

Nap time! Maisie naps every day at two, even at four years old. It's usually somewhere between half and hour and forty-five minutes to an hour, but on really difficult physical therapy days, she's napped for nearly two hours. After the nap she plays or watches Doc McStuffins or Adventure Time, usually in her stander.

5:00

Jeff gets home and plays with Maisie while I make dinner for all three of us. He is so great with her. Sometimes he plays a board game with himself while she watches (Maisie LOVES board games. I don't know why exactly, but she finds them, and Jeffy/Daddy fascinating and hilarious) or he plays Barbies or Doc McStuffins with her.

6:00

Dinnertime! Maisie gets her third feed and some of whatever Jeff and I are eating. I don't really know why, but this is definitely Maisie's favorite time of the day. She is never so happy and smiling as when we are all together at the table eating dinner. By the by, she eats in either a stander or the Mamas & Papas Baby Bud booster seat. I am in love with this thing. Special needs moms will know that special equipment is SO EXPENSIVE and when you find a mainstream booster seat that works, it's a miracle. The Baby Bud is wonderful because it can give her lots of support if she needs it, or she can just sit and use her own strength. It's also so easy to clean and doesn't have any spots for food to slip down. We can also access her button in it without any problems. I don't know what we're going to do when she grows out of the Baby Bud, because it's only supposed to fit up to three years. It was pricey at $70, but WAY better than the $400 that we would have had to shell out for the Special Tomato booster seat and chair back that was suggested to us (http://www.specialtomato.com/specialtomatoliner1.html).

7:00-9:00

This part of our day is less scheduled because it depends on how Maisie is feeling. Sometimes she gets a fourth feed, sometimes she goes to bed right after dinner. Sometimes we watch a movie and she falls asleep in the middle of it. Sometimes she just plays. Sometimes we even do some therapy if she's feeling up to it. And by "therapy" I often mean long, drawn out bath time. Being in the water is really great physical therapy for her. We even do it in legit physical therapy. She floats on her back or her belly and flaps her arms and legs. We're hoping to start doing physical therapy in the nearby YMCA. Anyway, without fail she's asleep by 9:00 and Jeff and I aren't far behind.

So that's a typical day. I'll talk about after surgery, in the hospital, and whatever other "norms" I feel the need to outline later.

First Teresa Method session, dialysis, and South Carolina

Our first Teresa Method session was scheduled for yesterday morning, but it got bumped to Wednesday morning because the patient who had that slot got sick suddenly and had to cancel (her name is Libby and she's a friend of Maisie's, so keep her in your thoughts). Because Nadine has so many patients to get through each week, she asked if we could take an earlier slot. And it was great!

First I'll walk you through what happened during the session and the theory behind each activity. Some of this stuff is pretty far-fetched, so bear that in mind. Her theories are very experimental and a lot of things are based on old medicine. So the first exercise was nothing more complicated than Maisie rolling around on a lumpy yoga mat and then jumping on a trampoline (with Nadine's help). This was to excite Maisie's qi so that Nadine can identify her blockages. Then they did some rudimentary yoga kind of stuff to warm up and start the "realignment" process. You might notice that a lot of her theory is based on similar stuff as chiropractice (chiropracty?) and muscle therapy. That's because her theory is that there exits an "energy system" through the body just like the muscular system or the circulatory system or what have you. Her therapy is designed to maintain, strengthen, and heal this energy system.

So anyway they did some yoga stretches and then Nadine had Maisie lay down on a memory foam cushion. First Nadine worked on her legs and strength with hot rocks. Basically, she had a Crock pot of water and river rocks heating up during the beginning of the session. She took the warm rocks out, tested them to make sure they weren't too hot, and applied an aromatherapy oil to Maisie's thighs and upper arms. The rocks were placed on her one at a time with a great deal of pressure from Nadine's hands and then were allowed to sit undisturbed. In total Maisie had three rocks on each of her thighs and two on each arm. Then there was an "energy massage" where Nadine used her hands to conduct the energy through Maisie's body with more grace than apparently it was doing on its own.

That was the end of the session, and at first I didn't see any results or anything different. But on Thursday morning, I found Maisie sitting on the floor playing with Barbies when I went to wake her up. This is a big deal because she had to crawl around the railing on her bed and then climb down to the floor. I mean, that is dexterity and strength! It didn't last and by lunchtime she was weak and tired, but that one action gave me so much hope.

In other news, Maisie has started biweekly dialysis again because at our last doctor's appointment, the blood sample came back pretty gross. On Tuesday we are going to a kidney specialist to have her function analyzed and see if we need to take any more action.

I've saved the best for last: my mom's friend Loretta has a beautiful beach house in South Carolina and she has offered to let us stay there for a few weeks in the summer. Maisie has to be well and strong enough to be that far away from her doctors for that long, so we now have a goal to aspire to.

The Teresa Method!!!!!

WOW!
I could sing!

Okay, so I haven't wanted to say anything about this because we had no idea if the funding would come through or if we would even get one session in, but the stars have aligned and I have wonderful (hopefully wonderful) news!

When Maisie was around a year old, we met at the hospital a woman who had a then-four-year-old, named Teresa, with similar problems -- gastroenterology, feeding, hypotonia -- due to Batten's disease, a very rare, terminal brain disorder. Teresa's mom, Nadine, is a registered nurse and has a ton of experience in holistic medicine after years of working for acupuncturists and qi (pronounced chee) doctors as well as in more mainstream hospitals and pediatricians' offices. She stopped practicing when Teresa was born because her medical demands required so much of Nadine's time. When it became apparent that Teresa was not developing normally, around six months old, Nadine struggled long and hard to get her the help she needed. Unfortunately, she was met with a lot of skepticism and it took another two years to finally be taken seriously. During this time, she drew upon the only resource she had, her medical training, to help Teresa and give her some relief. Although her methods were educated guesses, she met incredible success. Unfortunately, by the time she was able to get Teresa diagnosed and treated, her life was almost over. At the beginning of last year, Teresa died at the tender young age of six. In her memory, Nadine began researching and developing a new form of holistic healing which incorporates acupuncture theories (largely without the needles), qi therapy, aromatherapy, yoga, and other forms of holistic medicine. For months she has had a long waiting list of patients with the right of first refusal when she begins to practice on the public. And, in November, she announced the opening of her home therapy program, in which she travels to your home for a therapy session once a week or so of what she is calling "the Teresa Method."

Aaaaaand, drumroll please, we have been selected as one of the first families to receive care! This is thrilling because we have had so little success with other forms of therapy. I know I haven't really talked about it, but the truth is that for all the hours Maisie spends in feeding and physical therapy, she has not made much progress. I'm so excited by the prospect of trying something new that might help Maisie turn a corner.

Just a quick update at the end here, since Maisie is napping this is a good time to post. We have been continuing the beta blocker I talked about before. It's hard to tell this early in the game, but I like to think there is some progress. She is supported-standing, standing or walking along holding the edge of the table like a baby, more and more often. This represents a regression of three years, but it is, after all, a big improvement from the total inability to stand that she was experiencing a few months ago. The physical therapist thinks this behavior might indicate balance issues, and so she is doing some things to physical therapy to work on balance and body strength at the same time. I'm going to do a separate post on the individual exercises Maisie does, and if you're interested I will post her Teresa Method therapy exercises as well.

I hope y'all get as much good news as we have this week!

Just blatherings...questions, therapy

Well, I'm pleased to announce that everything is still going pretty well. Unbelievably, Maisie has gained A WHOLE POUND in the past two days. A WHOLE FREAKING POUND. Well, technically fourteen ounces. But close enough. A POUND? WHAT? Can you tell I'm excited? This is AMAZING.

In not so great news, yesterday she developed what seemed to be an infection around her g-tube. She had all this greenish-yellowish stuff oozing from the edges of the incision and the skin turned red and itchy an inch or two out. I could not for the life of me get in touch with Dr. B (the surgeon) so around two o'clock I finally decided to pack her up and head for the ER. And we were home in time for dinner. It turns out it was a minor infection and it's already clearing up. She's on a antibiotic through the tube and I also have an antibiotic ointment and instructions to reapply dressings three times a day to keep the incision clean and healing. As far as I can tell, the incision infection is annoying and a little bit itchy and sore, but not really a big deal. Mostly what we're dealing with is overzealous granulation tissue. I wish I could show y'all pictures of her sitting on the floor this morning, hooked up to a feed and doing a puzzle while watching Doc McStuffins and singing The Wheels on the Bus. My multitasking superstar.

In other news, some people have commented on how little my mom posts to the blog anymore. Now that I am taking care of Maisie full-time (I never mentioned it, I don't think, but when Maisie was discharged from the hospital as a baby, she and I lived with my mom, and Grandma was mostly in charge of Maisie's care. The reason for this was the side affects of drugs I was on to deal with the pyschological aftermath of the attack. I was taking anti-nausea pills, anti-depressants, and mood stabilizers, and my memory was affected. I was too loopy and forgetful to be entrusted with the care of a sick baby. We moved out into our own house nearby when Maisie was almost two) I know more about her than anybody else. This blog was always my idea, and when she started it she was just transcribing diary entries that she had written during the first few years of Maisie's life. All this new information has to come through me, so unless I can't post for whatever reason, it makes sense that I do most of the writing. Also, my dad is sick. He's always (and by always I mean since his fifties) had issues with his eyes, cataracts and stuff, but recently he developed an eye infection that is being rather troublesome. So Mom is otherwise occupied.

I've also been asked a lot what kind of therapy Maisie is in. She is no longer in Early Intervention but continues to work through her hypotonia issues (or try to) in private physical therapy sessions where she does strengthening exercises that might not seem like exercises at all to you. For instance, one of the things she has to do is kneel on all fours on an inflated surface (like a pool raft). It doesn't sound hard, but it's really, really difficult for her sometimes. On strong days she also rocks back and forth or goes from child's pose to all fours over and over again. Sometimes she just practices getting up from sitting to standing back to sitting. Sometimes she rolls around on the floor. There are days where it's a real challenge to walk along a hilly floor mat and climb around this foam-slide-sleps-ladder thing, which we have in the den. It depends on where she is physically. She swings from running and jumping to needing to propped up on the couch within twenty-four hours. We still don't really know why, but we do know it's getting worse. Most of the time she wears leg braces like these. Actually, looking at this picture (which is of Mabel Larson -- check out her story) I'm realizing that Maisie looks a lot like Mabel here. In this picture, Mabel is only about two years old, and a small, hypotonic two years old, and Maisie is four. But this is what she looks like. She has more hair, and she is probably a little taller, but this is what she looks like. This is how little she is. She's not growing up into a little girl, she's still such a baby. It's scary.

Tubie girl! Plus endocrinology and Kaitlynn

For once,  I have great news!

We just finished some fantastic Chinese takeout and an episode of Sherlock (we're very behind). Maisie passed out around 8:00 and is sound asleep. Obviously Maisie did not eat Chinese. She ate NINE OUNCES of high-calorie, high-fat, high-protein formula as well as a dose of anti-nausea meds and seizure meds. She did not puke a single drop back up, and yes, she took it all through her brand-new, perfect little g-tube!

The surgery went smoothly. Maisie couldn't eat for eight hours before the surgery and so by the time we arrived at the hospital at 11:00 (I know, I had the wrong time the other day) she was starving. She cried and cried when the nurse, a lovely girl named Lucy, got her ready for the procedure, and she cried and cried when Lucy took her away from me. When she came out of recovery she was loopy and confused and kept complaining that her belly was itchy and scratching at the g-tube like a fiend, so then the "new Lucy" (which is how post-anesthesia Maisie called the new nurse, Shriya) had to wrap her arms in these funky restraints (they look like those on the left and they are absolutely no fun) to keep her from scratching. A little hydrocortisone cream made Maisie feel better and let her be calm while we met with the endocrinologist.

A week or so ago the endo prescribed a medication that will hopefully stabilize the function of her thyroid. Looking back I guess I haven't really talked about this, but she is working on a theory that Maisie struggles with some kind of mutated version of Graves' Disease. She doesn't show any Graves symptoms except muscle weakness and weight loss, and apparently mild exophthalmos (bulging eyes -- we just thought she had big eyes!), but it's still a possibility. A blood sample has been sent off to test for low levels of thyroid-stimulating hormone and in the meantime Maisie will be taking a beta blocker. If she responds well to the medication, we'll stop there.

Finally, Kaitlynn's still in town. She is doing fantastic, and all of her tests have been coming back normal. She looks great! Her hair is thick and gorgeously platinum blonde -- basically the only good side affect of chemo. She used to have mousy brown locks and now look at them! She's rosy-cheeked, smiling, robust. She's still skinny but not disturbingly so.

So, here's hoping for more improvement, more good news, more weight gain, and no more puking!

Checking in, nothing new

Hello, hello.

First thing first, the tests for both Marateaux-Lamy Syndrome and FENIB came back negative. So there's that. I, for one, am increasingly convinced that there is nothing behind this other than a psycho end to a stressful pregnancy with repercussions reverberating through the years.

On the bright side, Kaitlynn will be here any minute! It's a been a looooooooooong time since these crazy kids have seen each other, Baltimore being a long way away with a sick little girl and Kaitlynn being in remission. Yes, that's right! She has had no cancer signs in ALMOST A YEAR. I don't want to jinx anything, but I swear this could be the end of her troubles. Wahoo!

My own little girl is scheduled for surgery tomorrow morning. She's down three pounds since last week and has thrown up almost everything we've put in her mouth. I really don't want to do this but there are no other options. She's starving to death right before my eyes. This time tomorrow she'll be under the knife. I'm so scared. What if something goes wrong? What if the g-tube still doesn't solve the problem? What if she still can't gain weight even with a feeding tube? It's a distinct possibility. We're hoping that eliminating the extra effort of chewing and swallowing will allow her to get the right amount of calories. As soon as the tube is in we will start giving her medicine that will hopefully allow her to properly appropriate the nutrition and calories she takes in. But it's all guesswork. There's nothing definite. We're taking a shot in the dark.

Pray for her, please. She needs all the help she can get.

Looking on the bright side

My post the other day was pretty angsty. It's true that I am very frustrated that we have gotten no information about Maisie's wonky EEG. But right now there is so much to be happy about.

On the whole, Maisie is doing very well. The trip to the research center did unearth some answers for us. I'm realizing that while I talked about being at the research center, I did not really fill y'all in about what we learned and the steps we took. We started her on a new kind of seizure medication and since then she has been alert and smiling more as well as seeing a decreasing in her myoclonic seizures. We know that she is suffering from acquired hypotonia from brain damage with late-onset symptoms. We know that part of this brain damage is a piece of benign flesh lodged in her parietal lobe. We know that the neural connections between her occipital lobe and her eyes are shaky and the muscles in her eyes which control the dilation of her pupils are weak. We know that her body is using too many calories and amino acids to produce proteins in a fruitless effort to build her muscle tone which is why she is not gaining weight: the nutrition is not being distributed properly. Right now she weight 21 pounds, which means she's lost two pounds.

We have eliminated mito as a possible cause of Maisie's symptoms and are waiting for test results on two disease of the rough endoplasmic reticulum (an organelle -- basically, an organ for the cells): Maroteaux-Lamy Syndrome, and Familial Encephalopathy with neuroserpin inclusion bodies. FENIB is exceedingly rare, but that one seems more likely than the other.

All of this is good news. Some of it may not seem like good news, but it is good news. Any information is good information.