eyes

I have been trying for days to write you all a post that explains the news we have gotten.

I can't do it.

I have so many fears, so many joys, so much hope and so much draining my hope and I continue to bottle all of these emotions inside until I'm sure my heart and mind will burst. But I can't let them go.

It was warm and summery last night, Maisie had been crying for hours from pain and anguish, she seized uncontrollably and my heart broke to watch her in so much distress. At four o'clock in the morning I packed her into the car and drove and drove and drove until she calmed a little. She loves the motion of the car, and after an hour her wails had decreased to low mumbles of discomfort.

We sat on a hill in a beautiful little park and waited for the sun to come up over the distant trees. She shook and cried in my arms. But as the first rays of sunlight came peeked over the horizon, it happened again.

Her body stilled, her clouded eyes cleared, and her pain and terror subsided as she stretched her weak arms to Heaven and praised God.

I knew, in that moment, that she saw the fading stars, the backlit trees, the sharp orange tendrils of  His wisdom and power in all its glory, that she fully appreciated His creation.

I knew also that God spoke to my baby, and though I don't know what He said I know that she fell asleep on the way home, and slept deeper and longer than she has in weeks or months.

I don't talk about it very much, but Maisie's eyes and ears are the scariest part of this journey for me. We have never known for sure how much she can and cannot see, but there have been moments when her face changes and I believe she is seeing me, or her grandma, or her pappy, clearly all at once, for the first time that day or week or month or who knows. Her eyes don't always track together and she doesn't always follow movement the way she should.

That is the scariest thing anyone could tell me, that my daughter cannot see my face.

Drill Sergeant June

In the past four and a half years my life has taken such an unexpected turn. When Maisie was born, we healed and grew together. I felt so bonded with my little girl over that shared experience. Maybe that sounds crazy, since she doesn't remember any of it.

Watching her overcome obstacle after obstacle, working hard and growing up into a beautiful little girl, was so inspiring. She beat all the odds.

And for a while now, I've felt as though the odds came back to bite her in the butt. 

She's been struggling so much, to speak, to eat, to even sit up. She has been experiencing a lot of unexplained pain and a lot of really brutal seizures.

As of three days ago she weighed 18 pounds. She's 32 inches tall. Four years old and the average size of a fifteen month old baby. She looks like a little girl, she has hair and her face looks like a four-year-old. But she's the size of a child more than half her age.

All of these things have been weighing on me for the past few days.

What is the reason?

Where is the answer?

A new neurologist joined the team at Maisie's hospital several weeks ago, and he was very interested in her case. He requested that we meet with him, so we did. After fifteen minutes, he said, "She is suffering from severe brain damage and will never recover past this point." I didn't talk about this ill-fated appointment because it makes me so angry. How was telling me that useful? How will that help?

I'm bringing it up now because he was wrong. 

After last Teresa week's session, Nadine suggested we book an appointment with a different physical therapy center. It has a more holistic approach, but they have the training and certification to start pushing Maisie's muscles harder than we thought possible. So I called them, and we went last Thursday. The therapy session started with literally a half an hour of Maisie doing nothing but sitting up. It was hard. After ten minutes she cried out of sheer exhaustion and frustration. She fell ever few seconds when her muscles gave out and/or she lost her balance. But the therapist just kept righting her. Again. And again. It was so frustrating for Maisie. But she did it. And she was so proud of herself when she realized this accomplishment. Before we went home, the therapist asked me to do exactly the same thing, just sit, for half and hour every day. It would be hard. She would cry. It may come to nothing. But it just might help.

We went back in yesterday. I spoke with the therapist and explained that we had sat together for half an hour every day. She had hated it. But she was slowly coming to understand the accomplishment she was achieving.

The therapist, who's name is June, was pleased. And then she pulled out a walker not unlike the one to the left. And she strapped Maisie in. She had a lot of support for her upper legs and torso, and she was not happy about getting in but once she was in the right position, a miracle occurred.

Without any prompting, she started taking tentative steps forward. Then she started really walking. And laughing. She was so happy. I didn't realize how sad and frustrated Maisie has been until I saw her complete and total joy at finding herself mobile again.

June's approach to physical therapy is not like anything I've encountered before. She has a tough, drill-sergeant attitude that is very intimidating, but she also has complete and utter faith in Maisie. She also believes that no progress will never be made in once-a-week therapy session. Maisie will make no progress if she does not keep up her therapy at home. So, for the next two weeks, we'll be renting a walker from the physical therapy center. Maisie is to walk for at least five minutes every day. The longer she can go, the better.

We've been so focused on what Maisie can't do that we never realized we should push her to do what she can. If she can take a dozen steps every day, that's a dozen steps and five minutes of glee that she didn't have last week.

She bit the odds right back, didn't she?

Mystery Lady

It's taken me a long time to write this post. A week or two ago, we were told that Maisie has Werner's Syndrome.

She doesn't.

Less than forty-eight hours after receiving the diagnosis, we got another call. They ran the blood test again and the results were different. So they drew more blood, ran the test, and it came back negative for Werner's. By some crazy fluke, we had a diagnosis for two days, and now it's gone.

My little lady is a mystery again. Oh well.

The truth is, I'm relieved. Werner's Syndrome is an rapid-aging disease, with the prognosis at 40 years. She would never grow up normally. She would age quickly, develop osteoporosis and diabetes and die of a heart attack at forty. That's not a happy ending.

Maybe, at this point, it's too much to ask for a happy ending.

Maybe we'll have an ending that will be no happier than that one.

But Werner's Syndrome is not our ending.

After we got confirmation that the diagnosis was wrong, I cried for two hours.

Tears of happiness.

Werner's Syndrome felt like a slammed door on hope. She was going to get sicker and sicker and die young and that's it.

And then I had hope again. I cried and cried and praised the Lord and sobbed and when I was done, I crawled into bed at five o'clock in the afternoon and held Maisie's tiny, frail body in my arms as I rested, really slept, for the first time in four days.

Answered

We went to see the GI on Thursday (after I posted this) because she's losing weight again. I'm hypothesizing that her intestines are inflamed and inoperable, just as they were when she was a month old. The GI agreed and ordered a stool sample and a capsule endoscopy to check her out. We got the results of the stool sample back yesterday, which confirmed that she's not absorbing nutrition the way she should be.

The endoscopy didn't go so well. She swallowed the little camera-pill just fine, but when the doctor examined the footage, he was surprised to find that her small intestine is not inflamed.

So now what?

Well, there's a plethora of things that could be causing this problem, but based on her medical history, the doctor is focusing in on something called multiple endocrine neoplasia type 1, or Werner's Syndrome. So, after the appointment, she got blood drawn so they could do a full mutational analysis of the MEN1 gene, and test once again for pancreatic function. I was scared. She meets so many of the criteria. Within two hours the doctor called to let me know that they had found significant pancreatic malfunction. The kidney tumors and stones that she's had in the past. The malabsorption of nutrition. The weight loss. The weakness. The fatigue. A billion other things that I never even mentioned here. It all adds up.

An hour ago I heard back from the GI. The analysis came back positive for Werner's Syndrome.

In many ways, I'm relieved. We have an answer for so many questions. But Werner's Syndrome is not the kind of thing that can be treated with one method or surgery or medicine. The best we can do is treat the symptoms. But this diagnosis means there are support groups we can join, there's projection for her future, there are answers and reasons and research to draw upon. It's not the answer to everything. A lot of her issues, like her seizure activity, are caused by brain damage sustained during gestation.

I don't know much about Werner's Syndrome at this moment. I will convey more information as I learn about it, but for now all I know is we have a name, and a future, and an answer.

Here I Am, Lord

Maisie has always loved music. As an infant we played music all the time, in the NICU and pediatrics, in the incubator and the "big girl" crib. Whenever the doctors or nurses had to do something painful, like insert an IV or a PICC line, when she had to go in for surgery, whenever something stressful was about to go down, we put on her favorite hymns. On Eagle's Wings, The King of Glory, Open My Eyes, One Bread One Body, Though the Mountains May Fall, and many others. They calmed her down like nothing else could.

Hymns were also how we taught Maisie about the Lord when she couldn't go to church. As a baby, the hour-long mass was too much for her. Only since she was two have we been able to attend church on a regular basis. We still go as much as possible, even though Maisie often falls asleep halfway through the sermon.

Anyway, in the past few days Maisie's seizure activity has increased again. She often goes through periods where her seizure medicine randomly stops working and she has episodes of bad myoclonic seizures, where a group of muscles, usually her hand or foot, starts shaking violently. It passes after anywhere from thirty seconds to four minutes, but this has been different, closer to a clonic, full-body seizure. She has yet to lose consciousness, but we're pretty worried. We've got an EEG scheduled for Wednesday, and until then I'm supposed to film her every time she seizes.

Well, yesterday she had a pretty bad episode. Her whole body jerked and shook for almost ten minutes. I was sure she was going to lose consciousness, I was sure this was the beginning of another step down. And then, something amazing happened. The radio, which was tuned in to a Christian station, suddenly blared "Here I Am, Lord."

Here I am, Lord

Is it I, Lord?

I have heard You calling in the night.

I will go, Lord, if You lead me

I will hold Your people in my heart

Her body calmed, became truly still, for the first time in days. She stopped crying, her eyes cleared, and she stretched her arms up to the sky. I know, in that moment, the Lord touched my baby and gave her rest, and she welcomed him into her heart. It was as though she spoke to the Lord.

"What is my place?"

"Why am I here, Lord?"

"What plan do you have for me?"

I will go, Lord, if You lead me

I will hold your people in my heart

Maisie has had a hard life, but yesterday, for the first time, I realized that there is a reason. God has a plan for my tortured baby, He has a plan that is greater than brain damage and seizures and feeding tubes and pain, a plan for her, to use her to spread His word. No mother could ask anything more of the Lord than for Him to choose her child to exhalt Him.

Sick and sleepy

Last night was our anniversary. Jeff really wanted to take me out to dinner, and I really wanted to go, but my parents had another commitment. I just didn't know if I could leave Maisie with a babysitter. Lately she has no energy. When she's not in the stander or in physical therapy she's curled up on the couch or the floor or in this baby swing (yes she still fits in an infant swing). She's so different from your average four-and-a-half year old. Most kids are running around, playing dress up and house, getting into trouble and climbing on the swing set. But Maisie's behavior has grown much closer to that of a ten month old baby. She doesn't get up and walk around very much. She's quiet and sleepy, sucking her thumb and exploring textures. When she has to go to the bathroom, she cries for me to bring her to the potty, but half the time she doesn't have the strength to relieve herself.

She's struggling with everyday tasks, she's worn out and frustrated with her own incompetence. It breaks my heart into thousands of pieces to watch her work so hard to play, eat, color, brush her teeth. We've almost given up on getting her any nutrition by mouth because it's so frustrating for her. She struggles to grasp the piece of food and then struggles to get it into her mouth. Her body is failing her, but her mind is sharp enough to know that something is very wrong.

I took this picture three weeks before her third birthday. My sister Miranda took us out to Crumbs to get cupcakes to celebrate her birthday, and Maisie devoured that entire vanilla cupcake by herself. The mom part of me felt guilty for letting her have that much sugar and fat, but today, if she could do it, I would let her have all the cupcakes she wanted. She's losing weight again, by the way. She made it up to 25 pounds, but at her physical yesterday she had lost two. The pedi wants to put her back on prescription formula as well as the blenderized diet, and basically see if we can force-feed her to thirty pounds, which is the estimated "healthy weight" for her height (still 32 inches. No, she hasn't grown at all since this post two months ago.)

We did see the developmental specialist this morning, and she firmly believes that Maisie has no mental retardation. Her motor skill issues are, according to the doctor, derived from a neurological inconsistency. Basically, her brain is not telling her fingers and body how to control themselves. At this point, there's nothing we can do to fix the problem except physical/occupational therapy. 

Speaking of which, her Theresa Method sessions have been going very well, even though we haven't seen dramatic results yet. At this point in her therapy, the goal is to reduce her stress and frustration so as to open her mind to the possibility of getting stronger. As Nadine described it to me, there can be no improvement until her qi is aligned and her mind is relaxed. Even though her physical well-being is the same, her intangible self is improving and growing stronger, which will in turn help her physical health. 

I don't know. It sounds far-fetched. But at this point, my daughter is in pain, she's sick and scared and weak and I will do anything that might help her.

Lots of love, as always,

Charlotte

Officially sprung!

We just got released from the hospital - woooo hooo!!!!

Maisie is feeling great. Her last PET showed that the tumors are completely gone. The biopsy continues to indicate that the tumors are completely benign, but their recurrence is concerning. We will be returning for dialysis once a week for three hours from now on. It is not ideal, but her kidneys have been traumatized and need all the support we can give them until the incisions have healed.

So far she's responded well to the blenderized diet. She's gained a little weight and is looking a little more her own age. After meeting with the orthopedist and the physical therapist we have decided to do a regular stander schedule of three hours a day. This is when I try to work in some educational stuff, reading, letter tracing, motor skills, shapes, stuff like that. Our "homeschool" is very loose at this point because we are working so hard on her medical obstacles.

In that same vein, we have recently noticed that she is not meeting some milestones that we would expect of a four and a half year old. For instance, she does not make strong associations between words and things. If you say "dog" she might make a barking sound, but she won't be able to point to the dog in a picture. She has really terrible balance as well. I know three-year-olds who are experts scooters and bikers, but she can't balance on a bike or a scooter. She falls down the stairs and off her chair a lot. She will attempt to feed herself and brush her teeth but her coordination is off and she gets food and toothpaste everywhere the way a one-year-old might. We have an appointment with a developmental specialist on Thursday and hopefully she'll be able to give us, if not answers, another clue to the puzzle that is my baby girl.

Lots of love,
Charlotte

Blenders, fingernails, dialysis, oh my!

We're still here at the hospital.

Last night I made up a huge batch of blenderized food for Maisie, which we started today. Beets, spinach, avocado, quinoa, blueberries, coconut oil, sweet potatoes, chickpeas, bananas, PediaSure...it doesn't have to taste good because she doesn't have to taste it. We're starting out slow, only doing the blenderized diet at lunchtime and only doing half the feed blenderized. The rest is our prescription formula. We'll slowly work up to full-time blenderized diet.

The last PET told us that all she had left of the tumor is a small spot at the top of her kidney. This is good news and bad news. The good news is that the spot is only about the size of my fingernail. The bad news is it's pretty well embedded in her kidney. Because the kidney is so small and weak to begin with, the doctors don't want to cut it up to remove the tumor. The biopsy told us that the tumor is benign, so it's likely that it won't spread. But it might still cause her trouble with her already troubled kidney function.

Speaking of kidney function, she is now at 50%. This is a 20% decline and very worrisome to all of us. For now, we'll be staying in the hospital for another few days without doing anything to her kidneys. When the previous incisions are healed, we will get a more accurate estimate of her kidney function and see, over the course of a few days, if there is any more decline. In the meantime, she'll be on dialysis for two to three hours every day.

Hopefully we're looking at no more than two more weeks here at the hospital, and then we can bust out of this joint and go home.

Getting an older child ready for a new baby: the crazy way!

Hi everybody! Stella here. Charlotte has kindly asked me to share what I did to get my two-year-old, Mary Alice, ready for her little sister. We were so excited when I found out I was pregnant -- as the oldest of six, I could never imagine having anything less than a huge family. But I also remembered vividly the jealousy I suffered from. I didn't want my kids to think that the new baby was in any way usurping their place in mommy or daddy's hearts. So I decided to do something a little bit crazy.

A month into my second pregnancy, when I was certain I was having a baby, I told Mary Alice that she was getting a present. I wasn't referring to my baby, though: crazy as it sounds, I had spent $150 on this sweetie pie:

She's a "reborn doll," a hyper-realistic baby doll designed to look and feel exactly the same as a real infant. She's the same size and weight as the average two or three month old, and even breaths, coos, and has a heartbeat. When she arrived, I would teach Mary Alice to take care of her the same way she would take care of a real baby. But Mary Alice still didn't know about the coming doll. First, I told her we had to prepare for the baby. I decided to get the nursery ready a little early. Mary Alice picked out everything, from the paint to the curtains to the furniture. We bought a real crib and real bassinet, a dresser, a changing pad, 0-3mo. diapers, bottles, the works. My husband sawed the feet off the bassinet so that, with a little stool, Mary Alice could easily reach inside. She came with me to pick out all kinds of 0-3 outfits, socks, hats. 

The only thing I got that wasn't made for living babies was the stroller and cary seat. I got the most realistic ones that I could, but because these items are expensive and when the real baby arrived I would need one for both babies, I decided not to spend all that money. Instead, after reading this rave review, we got the Joovy Toy Bundle. It came with a super-realistic pack'n'play, a stroller, and a car seat, all light enough and small enough for a little girl to use. The car seat latched into the car or stroller just like a real one. Mary Alice had not trouble figure out how to work the latches. Perfect. We even had a baby shower with some of her friends, and she got to unwrap each of these pieces.

Everything I purchased would be used for the real baby, but first Mary Alice would use it with her baby, and when I was taking care of our new little baby, Mary Alice would be right alongside me taking care of this doll. When I was three months pregnant, the doll arrived in the mail. Thankfully, she arrived while Mary Alice was at school, so I was able to dress her in a diaper and hospital blanket, and even put a little wristband on her. When Mary Alice came home, I told her that I had a very special surprise for her. I presented the baby and taught Mary Alice how to properly hold her. Then I explained that this was Mary Alice's baby to love and care for. I taught her how to change diapers and bottle feed. I made up some "formula" so that Mary Alice could make her bottles and feed her with the special, sealed bottles I had prepared. I even downloaded baby crying and sleeping sounds to iTunes so that the baby monitor had something to pick up on and Mary Alice had a reason to go check on her. The baby, whom Mary Alice named Emily, became Mary Alice's pride and joy. When Mary went to school I promised to take care of Emily. Often I turned her off so I could get work done, but did keep her in the bouncy seat near me. 

When my second daughter arrived, Mary Alice was thrilled that mommy could join in her play. My diabolical plan had worked. It was an expensive endeavor, but the love between these two little girls is priceless, and everything will be reused for the rest of my kids.