Playgroup

On Thursday afternoon we attended a playgroup in town held in a school gymnasium. It's typically held in a classroom, so this time Teenie Bird was quite intrigued, and a lot apprehensive of the new environment. She was very excited to go and check it out while we were at home.

I went back to get the camera before we left, 

and she requested I take this picture of her

A trademark characteristic of children with hypotonia (low muscle tone) is that they're big people watchers, especially when it comes to physical activities. They sit and analyze situations, studying how individuals do certain physical tasks. Whether this is so they have some clue when they go on to attempt the same task themselves, or they just enjoy watching other children play, I don't know.

Either way, this personality trait of sorts, was out in full force at playgroup, as she sat with one particular toy: a simulation of a car, with a steering wheel and a bench, and watched the other kids run around for nearly a half an hour, before being willing to join in.

 Ever so watchful...

 Watching another child play

Driving the car

During her study of the other children, she was quite animated about a brother and sister duo, who were so cute and rambunctious in their play with one another. Her eyes were just lit with animation and humor as she watched these two siblings run around the gym or push one another in various little cars.  She would giggle, point, and say repeatedly "They're funny!"

I finally convinced her to relinquish her perch in the corner and explore more of the gym and play equipment. At which point, she discovered the joys of the playhouse, and simply fell in love...

Playing house with the little boy

She and the brother, from the brother and sister duo, both screamed with glee in the playhouse, jumping up and down, wagging their hands all over the place. It was adorable and she had so much fun. It looks like we're going to be making an outdoor yard purchase for her in the near future...

After the playhouse, the teachers let loose a basket of balls, furthering the joy in the gym. Teenie Bird found a blue ball to her liking and didn't let it out of her sight for the rest of the hour long playgroup.

 One of the skills she struggles with is throwing a ball. 

We got some good practice in!

I told her I'd take a picture of her with her ball. 

This is the result. She's such a goofball.

She's not letting that ball go for anything!

Playgroup was a success, I'd say, aside from the one mother's comment about Teenie Bird's size, which I talked about in the previous blog post. Life hasn't been easy for this child, and it hasn't been easy raising her, but it has been very easy loving her. In this respect, life is as it should be.

Now onto next week, with spring break, and NO playgroups! Lord, give this Mother the strength...

The next step

I got an interesting phone call from the genetic counselor Friday and through Teenie Bird's screaming "Mama, mama, MAMA!" I learned the geneticist had finally received my medical records from my own pediatrician from when I was a child.

I ended up hiding from Teenie Bird at the top of the stairs (there's a tragic irony in there, I know, that I hide where my child physically cannot follow) in order to have an intelligible conversation on the phone.

You may or may not recall, that we were waiting for the geneticist to receive my medical records from my pediatrician from when I had my muscle biopsy when I was 11. The muscle biopsy was to determine if I was positive for Malignant Hypothermia (MH), which we now know was positive.

The pediatrician sent on the test results from their file to the geneticist and he reviewed them. He was hoping to find that the doctors in 1993, who performed the biopsy, had taken the test one step further to look at what strain of MH I might have. The doctors could have placed my muscle under a microscope and looked at it more closely, instead they merely placed the small piece of muscle in a bath of calcium to see if it contracted. If my muscle contracted, then I was positive for MH.

Interestingly, the genetic counselor told me that only in recent years have geneticists and doctors identified the particular genes attributed to MH, in particular, the RYR1 gene. So, although my medical records did not provide the geneticist with that information, it was helpful for them to see my diagnosis in black and white through the documentation.

The genetic counselor and the geneticist feel strongly the next step in this process of determining what might be wrong with Teenie Bird is to see if what she has, actually came from within me and my form of MH.

I don't know if I've fully come to terms with that yet. All along I'd thought what she had was something entirely different, that it was completely alien to us and our family. In an odd way, I suppose, my brain had reconciled itself with the thought that somehow this child had seemingly been "preyed" upon by a condition we knew nothing about.

Now it seems she may have been afflicted by something I passed on to her all along. After everything she's been through, witnessing her screams and tears through physical therapy, her eating difficulties- throwing up, gagging, spitting food out, the countless times she's fallen down or struggled to get up with her ankle braces, and possibly worst of all, seeing the marked differences in her, compared to other children, makes me cry to think that I, completely ignorant to it all, still played a role in the troubles she's had.

As if the fates just had to prove Teenie Bird is in fact different, I had yet another mother, who I do not know, point out to me at playgroup recently how small Teenie Bird is, at least in comparison to her own child, Gracie, who's probably around 13 to 15 months of age. Gracie is nearly as tall as Teenie Bird, and once again I see how much more solidly built other children are in comparison to my own. I haven't yet found the ability of appropriately responding to people who ask this about our child; I always stumble through the delivery.

"How old is she?" she asked me. I looked at Teenie Bird and smiled. "26 months," I said. "So, just over 2 years old."

"26 months!" she seemed surprised. "YOU'RE 2 years old? But you're so small!" she said, looking down at Teenie Bird. "I mean Gracie is almost as tall as her!" She noted Teenie Bird's good language skills and how much she talks, as well as how much hair she has (though, admittedly, the child has always had a lot of hair), and didn't seem to be able to reconcile those factors with her small size.

"Yeah," I said. "Actually, um, we're in the process of going to doctors right now. She has a genetic disorder that seems to prevent her from growing."

The mother looked at me and her eyes widened, like, as if to say, 'Oh, crap, I just made a Mother's faux pas', and sort of just wandered away with her own child to another part of the playroom. It's all right, I suppose, and I'm sort of used to it by now, but it hasn't stopped piercing my heart, just a little bit, when someone else notices her differences. As I type this, I think, 'You should feel blessed, you should feel so lucky, she could be in a wheelchair, or worse', but I don't think it matters what you think, when you come right down to it, all mothers really want is for their children to be some form of "normal". Yes, I think most parents want their children to be standouts from the crowd, we want them to be different, but only in relation to being artistic, or interesting, or abnormally smart. Not in relation to whose been to see a neurologist and a geneticist, and who hasn't.

The genetic counselor concluded that the next step in the process is for me to have a genetic test done, to see if I have this RYR1 gene, and, in particular, if there's a mutation in that gene. If there is a mutation in the gene, then it is more than likely that Teenie Bird also has this mutation and is at risk for the MH related issues, which could be what we've been seeing in her all along.

If I have this RYR1 gene it also means all the many little children in my extended family, who could have MH, only need to have a blood test to determine if they too could have this condition, as opposed to having a muscle biopsy, like I did. Like a stone thrown into a pond, nothing stops the ripples, they only continue to spread.

The second step in the process, after my blood test, would be for Teenie Bird to have this same test to study if she has the RYR1 gene as well. In a few weeks, she and I will make another trip up north to the hospital. By that time, Gramma and Papa will be in town, and Gramma can make the trip with me to the hospital for my own blood test, while Papa and Teenie Bird have some good ol' fashion fun together.

It's bittersweet, isn't it, when you realize that you yourself were the missing puzzle piece all along?

Looking for something hidden

On Wednesday, March 16th, our little family packed up all our cares and woes and headed to see the neurologist to hear more about Teenie Bird's December EEG results, which we had previously been told were normal, but required more analysis.

Teenie Bird with her phone and car keys- she's ready to go!

I could sense that both Dave and I were very anxious to hear what the neurologist had to say, though on the hour drive out to the hospital we didn't discuss what the doctor might tell us. We chatted about the week and looked for restaurants to eat at on our way home, and did our best to keep Teenie Bird occupied in the backseat.

We finally arrived at the hospital and, despite our very explicit directions provided by the hospital, we still got lost in trying to find the location of the doctor's office. We initially went to the area of the hospital where Teenie Bird's EEG was conducted....no, that's not right. After finally asking for directions, we turned back around, got back on yet another elevator, which thrilled Teenie Bird to pieces, and rode it to another part of the hospital. We wound our way through the hospital hallways with Teenie Bird leading the way. Her saunter and little wag of her shoulders was out in full force, bringing smiles to the faces of the people we passed. 

We found the neurologists' colorful office with animals hanging from the ceilings and butterflies on the walls and Teenie Bird liked the place immediately as they were playing one of her favorite cartoons on the overhead television.

I went to the desk and filled out yet more paperwork, despite having already filled out paperwork that was sent to us in the mail, and amazingly I realized then that I had forgotten Teenie Bird's insurance card. It's amazing where ones brain goes sometimes...we've been anxiously awaiting this appointment for weeks and weeks, and yet I can't remember to grab her insurance card off the table? Good grief. At least we're starting off on the right foot!

We were eventually led back into an examination room where a nurse took Teenie Bird's height, weight and blood pressure. She was still 23.2 pds., and about 31" tall. Whadd'ya know, she hadn't gained weight or grown since the previous Friday when we visited with the geneticist. I asked the nurse if they had received the geneticist's report, and she indicated they had received it via fax and it was in our file. That's great, I thought, then the neurologist should be fully caught up on what we know of Teenie Bird's condition to date.

We were then led into a room where we waited some time for the neurologist to come in. 

Our view from the examination room: the ER, helipad, and highway 

While we waited, we gave Teenie Bird some of the toys the office provides for patients. She was kept pretty well entertained. She behaved better, and for longer, than with the geneticist. Sadly, this kid is getting used to being in a doctor's office.

Playing with toys in the doctor's office

Coloring a picture with crayons

When the neurologist slowly ambled into the room after about a 30 to 40 minute wait, I was surprised at his appearance. He had a full head of white hair, white beard, glasses and was a little hunched over. He walked with a slight limp and a cane. Though it was only when he finally spoke, after settling himself on a stool, with our file and a pen, that I realized the visit might be more difficult than I previously thought. He was so soft spoken I could hardly hear him over the room's heating duct system.  I kept having to lean forward and say, "Pardon?" or pointedly read his lips, instead of making eye contact. 

For most of the two-hour appointment, he took down Teenie Bird's medical history, my medical history during my pregnancy and labor (which is always fun to relive, time and time again), before finally examining her. He checked her reflexes and her hands. He tickled her feet, though interestingly, I noted that her left foot reacted less than her right foot did to his tickling them, but I don't know if that means anything.

He also checked her special shoes very carefully, turning them over and sideways. David and I both sat in silence watching him check first one shoe and then the other, while Teenie Bird very nearly jumped out of her skin in the quiet. I swear he looked at her shoes for nearly 5 minutes, drawing a mini-diagram of them on his report, and making illegible notes about them. He didn't offer up any information as to what he was looking for, but it was my own inexperienced conclusion that perhaps he was looking for scuff marks or uneven wear and tear on her shoes, to see if she walked unevenly on one shoe or the other.

We had a hard time explaining to the doctor what exactly we were seeing during Teenie Bird's "episodes". Were these actually seizures? We thought so last year, and both the sitter and my parents had seen them. But now we're not so sure. There's definitely something happening, but perhaps its been her vision all along, and not her brain. I described how her eye turned out and she didn't seem to be seeing me, and he said, sort of judgmentally (I felt), "and what makes you think those are seizures?" I stumbled through describing what we were seeing, but hopefully got across to him that we're just not sure what's what, and hopefully our visit with him will merely be a step in ruling out yet another possibility.

He seemed unsatisfied with my inarticulate response and kept pressing me for further description- what do her hands do during these episodes? What do her feet do? What does her face do? My answer was that she basically remains immobile, but seems startled if I'm touching her when she comes out of it, but hadn't been when she entered into the "episode".

He requested we keep a journal of these episodes, when we see them, what's going on around her when they happen, how her body reacts, etc. Well, now that we've been home from the doctor for a week, I've found it incredibly difficult to follow up with this request. I see her eye stray and the look of her eyes change constantly throughout the day. When this happens, more often than not, I can look at her and tell immediately, just by her eyes, whether she's actually seeing me or not. Other times it's more difficult.

In the end, he said he was going to take it seriously that what we're seeing in her is seizures. He requested an MRI of her brain, for which she'll have to be sedated for. He also requested more blood be drawn and several tests run to look for absent seizures and hypotonia, amongst other possible muscular disorders, due to her muscle delays.

We return to the hospital April 20th for her MRI and April 28th for the results. I'm not looking forward to the MRI, since she must be anesthetized, and due to the likelihood of her having Malignant Hypothermia, they have to ensure the anesthesia they give her is not one she's allergic to. An allergic reaction happens very quickly and an antidote must be administered fast before the patient's temperature rises and they suffer multi-system organ failure preceding a very fast death. It's quite scary. I told Dave I won't be at ease until she wakes up and we can take her home.

Our very next step in the process however, is our visit with an opthamalogist on April 4th. This time the doctor is a woman, and though I know it's sexist, perhaps I can appeal to her motherly instincts to push as hard as she can to figure out what's exactly wrong with this child's vision (due to an optometrist's previous findings that her eyes were perfectly fine) because "nothing" is not the right answer. Even her own Mother can see that much, when I, more than anyone, would much rather nothing be wrong with my precious little Teenie Bird.

Until next time, friends...

Gosh, she's small

It's Tuesday morning and the phone is ringing off the hook! Good thing I had not one, but TWO cups of tea this morning, along with a giant glass of orange juice.

Following our visit to the geneticist Friday in Chicago, Teenie Bird's test results came in in a flurry yesterday and today. How nice it is to go to a specialist, and everything is done in one spot and there's no waiting for days or weeks before you find out what's going on!

Teenie Bird had a blood test for TSH (thyroid-stimulating hormone), T4 (a test for thyroxine, a hormone produced by the thyroid gland), and CK (creatine kinase, an enzyme in the blood made by muscles). Can I say, thank God for Google?

All of these tests appeared to be in the normal range, showing no abnormalities in her muscles or in her thyroid. This, interestingly enough, seems to be a paradox to me, that a test on the muscles in a child with significant muscle delays, shows nothing to be wrong. Amazing! The body hides its secrets very well.

The second test done on Teenie Bird Friday was a bone age scan, which is a way of describing the maturation of a child's bones (this time, thank you Wikipedia), and how much growing is left to be done. I find it interesting that through this test, doctors can determine to what height your child will grow. However, in Teenie Bird, being that she is already suffering from some form of delay, it would be harder to determine her final adult height.

The geneticist determined that her bone age growth is considered to be that of a 12 to 15-month-old child and her height is the same as an average 18-month-old. So in the least, her bone age is delayed by 11 months and her height by 8 months. Which I find to be quite ironic, considering that for a bulk of Teenie Bird's short life, we have often been told by well-meaning (I hope) strangers that she is quite short, and appears to have just turned one and not two!

The geneticist said the test did show, however, there is plenty of room for her bones to catch up in growth. Though he said it did not appear to be incredibly serious, he did recommend we go on to see a hormone specialist, also called an endocrinologist, who will chart Teenie Bird's growth and see how she is progressing in order to ensure she is not losing ground in her growth.

The geneticist said there are three possible reasons as to why a child's bone age scan could come back with Teenie Bird's results.

1. There is an abnormality within the bone. Thankfully, the x-ray of Teenie Bird's hands showed no abnormalities within her bones;

2. A chronic illness has plagued the child, preventing proper nutrition. We can also be thankful a chronic illness is not apparent in Teenie Bird; and

3. The child is merely delayed. In this instance, children who are delayed in bone growth take more time to grow and will catch up to their peers later on. A delay in bone growth could be due to a problem with the thyroid hormone, but the blood tests on Teenie Bird's thyroid showed no problems. The geneticist said Teenie Bird's delayed bone growth could be due to a more rare hormone problem, but would refer us on to speaking with the endocrinologist to see if this is in fact the case. He said it is very likely any sort of rare hormone problem can be managed by administering a hormone drug.

The geneticist said, at this point, there is no known correlation between Malignant Hyperthermia and Teenie Bird's height and bone delay, and it is unknown whether or not her bone delay is tied into her muscle delays, though the endocrinologist may be able to determine if there is a tie-in between the latter.

So, after all of that, we're now waiting for all the appropriate reports to get to the appropriate people. It's crazy! Our little family is lighting up the fax machines all on our own! The geneticist needs my medical records from my own pediatrician when I was a child to see if it was determined when I had the muscle biopsy what specific strain of Malignant Hyperthermia I have; if they did determine this, that will better help the doctors to figure out if Teenie Bird has it, as well. But, FIRST they need a release of information signed by me allowing this transfer of documents.

THEN, Teenie Bird's pediatrician needs the report from the geneticist, recommending we see a pediatric opthamologist and an endocrinologist. We need her pediatrician to refer us on to these two specialists.

The geneticist is also forwarding on his findings to our physical therapist and our coordinator, Sara, who arranges all of our therapies. And, as my Mother reminded me, I need to make sure I have copies of all of these reports as well. I know, I know. Bad momma gets a slap on the hand for being unorganized.

Can I just say that sometimes life comes at you so fast, true organization is a ruse and you're just trying to hold on the best you can? Take for instance my kitchen table (first let me find the camera on said table)....

Let's see here...two purses (one being used as a diaper bag),

one candle, two childhood development cds, a ton of paperwork, 

one child's ankle brace, a child's stocking cap, one glasses case, 

and two lamps, one of which is broken. That last one is 

very random, I know, but where else do you keep two lamps

out of a 2-year-old's reach? On the kitchen table, of course!

Since you were forced to look at my horrid kitchen table,
here's a more pleasant photo to hopefully bring a smile...

Does this look like anyone you might have seen before? 

She sure does look awfully familiar. Hmmmm....

Oh, I know!

MIKE WASOWSKI!

(character from Pixar film, Monsters, Inc.)

From our family to yours, hope this brought a smile to your face. Have a nice Tuesday! We'll let you all know how our visit tomorrow with the neurologist goes! And, of course, prayers are always welcome. Thanks and blessings to you and yours!

Solving a puzzle

Friday morning the sun rose, proud and bright, and we all were anxious and excited. After weeks of hopeful anticipation and worry over Teenie Bird and a potential diagnosis, our little family made a two-hour trek into Chicago March 11th, to visit with a geneticist at a hospital there.

Teenie Bird's pediatrician had previously recommended she undergo further testing, including an EEG, which she had at a hospital in December, to determine if and why she was having her staring spells. The second test was a chromosomal study of chromosomes 12 through 22, to determine if there were any abnormalities, the information of which was obtained through a blood test. The chromosomal study was the test that sent us to the geneticist's door, in the hopes he might have some further information for us.

Next week, we visit with the chief of neurology at another hospital, to see if he can provide us with more information about her staring spells and hopefully, her vision, which seems to come and go.

The geneticist and his assistant, a genetic counselor, were tremendously kind, professional and very thorough in asking us questions about Teenie Bird, and the genetic history of each of our families.

We both found it to be tremendously interesting and complex as we traveled through the line of questioning to determine what could be going on with our darling, little daughter. I was strangely pleased when the geneticist looked at Teenie Bird sitting on the floor playing with her shoes and ankle braces and said, "It's clear to me she has some form of hypotonia," the one diagnosis we've been waiting to hear for over a year, and yet the discoveries just kept coming.

We were well into the line of questioning when I mentioned that I am positive for Malignant Hyperthermia (MH), an allergic reaction to certain anesthetics. This is a hereditary condition, which both my brother, Jason, and I, it is believed, obtained through our biological father. My Mom and Dad learned Jason was positive for MH when Jason suffered a reaction to a combination of drugs used in the anesthesia he received during an operation. Meanwhile, I was tested for MH through a muscle biopsy done on my leg when I was 11.

Once the discussion turned towards MH, the geneticist and the genetic counselor zeroed on it and the conversation took an amazing turn.

Unknown to me and my family, we learned there are different forms of MH an individual can have, which can have a profound effect on an individual, and not just in an operating room. Certain strains of MH, in combination with a disease called Central Core Disease (CCD), can cause developmental delays in the muscles making crawling, walking, and standing more difficult, and can cause a sensation in children where their limbs have a "floppy" feeling to them, all symptoms we've seen in Teenie Bird.

The geneticist informed us that some individuals can go through life without even knowing they have MH or CCD and that generally the life expectancy of individuals with this condition are normal. On the other hand, some individuals can suffer more dangerous symptoms.

The doctor said people who have this condition can suffer from muscle aches and pains in the proximal region of the body (thighs, hips, and arms), and can suffer shortness of breath or difficulty breathing after strenuous exercise.

Suddenly, my mind began to wander back through the years of my life- the 16 or so years I have suffered from muscle aches in my legs, arms and joints, which have limited my mobility and have often forced me to retreat under a blanket and a cloak of Tylenol, when I would rather have gone for a walk. Or  my sophomore year in high school when I was rushed to the emergency room, because I couldn't breathe or stand, after running the 400 meters at a track meet during one of the most physically fit times of my life. I was placed on oxygen and a visit to my doctor the following day could turn up no cause as to why I experienced this inability to calm my own heart rate or control my breathing.

Now these symptoms in and of themselves are not unusual following exercise, but when placed together with MH and my daughter's muscle delays, it felt as if this doctor had suddenly placed a puzzle before us to which we had unknowingly had the pieces to all along.

He recommended we do a bone age scan of Teenie Bird's tiny hands, to determine the rate at which her bones were growing, as well as a blood test to look at her thyroid and other things associated with MH. They were also interested in obtaining my medical records from when I had my muscle biopsy to see if the doctors then determined what strain of MH I have, and if necessary, a blood test on me to get a better look at my own condition.

"Of course," I said. "Whatever you need to do, whatever is necessary to help our daughter, I'll do it." Of course, I said this in the heat of the moment, without thinking of cost or to what lengths our insurance will cover these procedures, but even now that I've had a moment to collect my thoughts, 'whatever it takes' for me still means whatever it takes.


Following our lengthy and seemingly miraculous visit with the doctor, we waited some 40 minutes for her x-ray, at which point Teenie Bird's patience had run dry. While we waited, she and I decided to go for a walk up and down the bright hallways and across a sort of enclosed gangway with windows from floor to ceiling, which overlooked a busy roadway below. I walked behind her and she marched up and down, wagging her shoulders, her hips, pumping her arms, her pigtails bouncing with every step. As she meandered her way through the crowd, a big smile on her face, it was in this moment that I experienced another wave of unexpected joy over her. I looked at all the faces of the people passing by, doctors busily talking on their phones or amongst each other, rushing to their jobs or out to lunch, and I honestly couldn't tell you how many people stopped to smile at her, to laugh, to coo over her, to tell me how cute and adorable she was.

We passed one man who smiled ear to ear every time she went by, slapped his knee and laughed heartily at her proud walk down the hallway.

"Well, would you look at her!" he said. "She is just on a mission!"

She was simply in her own world, but it was then that I realized what an important role this child has played, the profound effect this little being, whose been in this world a mere two years, has on the people around her. It was so amazing to see- people young and old, male and female, different races and ethnicities, from one end of the economic scale to the other, all derived happiness from her joy. She brightened peoples lives just by being there, and we should feel so blessed that we are first-hand witnesses to her ministry, which I know sounds presumptuous of me to say, but that is simply the best word to describe it. Teenie Bird's joyful, childlike, innocent ministry to bring a smile to people's faces.

She brought her joy into the x-ray room where she willingly and gladly mirrored my actions by placing her two tiny hands on the x-ray table, into the light of the machine, which the technician quickly followed by snapping a 'picture' of her hands.

"You are awesome," the technician said to her. "You are so cute. You deserve a sticker," at which point, she popped out of the room for a moment and returned with two stickers for Teenie Bird.

Teenie Bird points to her "I had an X-ray" sticker

We continued on our journey to the fourth floor to have some blood drawn. I knew this part of our visit could spell trouble, since not three weeks before she had some blood drawn at an area hospital close to our home and the phlebotomists there were unsuccessful in drawing a sufficient amount of blood. They had to move the needle around in her left arm, before switching to her right arm to finish filling the vials. It was not a pleasant visit and many tears were involved with that episode.

While we waited in phlebotomy for her name to be called, Teenie Bird threw her third mini-fit of the day, derived from exhaustion, hunger and I'm sure, unknowing dread at what more could lie ahead of her in this marathon day of discoveries. Through her tears she let me console her by pointing out another little sick girl sitting across the aisle from us with her Mother, and when they were finished and were readying themselves to leave, Teenie Bird brightened again and yelled out to the strangers, the tears still drying on her face, "Bye people!" with a big exaggerated wave over her head. They chuckled, smiled and waved goodbye to her. And so more people were given a tiny bit of joy on what must have been for them too, a difficult day.

After being led back to a tiny room, I knew immediately when she knew what was coming her way, as she bucked and scrambled in my arms when I wrapped my own legs around hers (a bit difficult and awkward to do in a knee length skirt), and my arms around her other arm and torso, sufficiently strapping her down with my own body as they drew blood. Her screams and tears tore at my heart, as did her ignorance in not understanding what was happening and how her own Mother could play a role in letting a strange man (who happened to have a nearly indistinguishable Jamaican accent) touch her and hurt her. Thankfully, the man knew what he was doing and got the job done on the first try and we were out of there like a shot.

All the way home David and I jabbered on like monkeys to each other, and then to our respective Mothers via phone, about all the things we learned, and how amazed we were that this puzzle had sat before us for so long without us being able to figure it out.

Teenie Bird struggled in the car, through exhaustion and impatience, forcing me to pull out all my bag of tricks to entertain her- including giving her scraps of paper, the drink tray from Wendy's, and smelling her admittedly very stinky bare feet.

That evening as I was checking my email and reading the horrible news following the earthquake and tsunami in Japan, I found I had received an alert from a blog page for Mother's with children who have hypotonia.

This mother, Stacey, said she had a 17-month-old daughter with hypotonia and has experienced the same symptoms as our own daughter. "I just read your post with regards to some of the visual issues your daughter is having. You mentioned that sometimes it doesn't seem as though she is seeing you,"she wrote.

She went on to say that her daughter's opthamologist had tentatively diagnosed her daughter with cortical visual impairment, meaning her eyes respond appropriately to stimuli, but that her brain may not be receiving the message correctly, so she doesn't always "see" even though her pupils may respond to light. This translates to what can best be described as "inconsistent blindness".

On three different visits I was told by an optometrist that my daughter's vision was fine, she could see, and anything going on with her eyes would resolve on its own, despite my insisting that something wasn't right.

Of all days to respond to my inquiries, this mother, Stacey, responded Friday. What makes this more amazing? I wrote my initial post February 23, 2010, over a year ago, and she responded at the end of an already amazing day for our family. I believe in signs, I believe things happen for a reason, and this is another example of some higher power working in our lives.

Given that the geneticist had already recommended we visit with a pediatric opthamologist, we can now go armed with this new bit of information provided by a fellow mother, also working in the trenches of raising a special needs child. Given all of these things, we have such hope for Teenie Bird's future, and we can now calm ourselves knowing the future of any other children we may be so blessed to welcome in our lives, can also be as bright as hers.

Celebrating our doctor visit with ice cream!

Happy to be home once more in our Pjs, 

playing with Momma's scarf

This can't be good....

The week I decided to start a blog about finding my peace, my own space, and my voice...all of which is dependent upon yes, my morning dose of tea, what do I happen to run out of?

Oh, Lord. This can't be good...

home life

I've been meaning to start this blog for some time. I don't really know why it has taken me so long to come around to it in the nearly three months since my schedule unexpectedly cracked wide open with a lay-off from a job I didn't particularly like.

For nearly three years I worked at a small law firm, trying to find my way through foreign legal documents, through jargon, through stiffness, through office antics and odd secretary grudges. It was a 9 to 5 job I worked because it paid more than my previous 9 to 5 job at a hometown newspaper as a reporter, which I got straight out of college in 2004. I graduated with a bachelor's degree from a Midwestern liberal arts college, majoring in English, with minors in Women's Studies, Philosophy and Religion.

My husband David and I, and our college cat, the terror, Shere Kahn, whom I "adopted" at 6-months of age on campus, moved to the small, Midwestern rural town in which my husband grew up because his family was here and we really didn't have anywhere else to go. Before long we were apartment living with Kahn, though we soon added fat, needy Luna, and trouble-making, street-walking Cora Munro (Last of the Mohicans, anyone?) to the bunch.

Kahn, Cora Munro, and Luna (L to R)

Perhaps we should have thought through our choice a little bit better; just like our college decision, it was an opportunity to land some place different, some place new, but, alas we landed here.

We married in a small church a year later and have now been here for nearly 7 years; it's hard to believe time has flown by so fast. We have our lovely little blue house, with the cute front porch and wonderful, warm breezeway in the summertime, and a nice backyard with room for the terrible twins, Atlas and Venus, whom we adopted from our town's No-Kill Animal Shelter. They're now 4, and are as much of a handful as they ever were.

Venus and Atlas, currently looking not quite so mischievous (L to R)

Add in my husband's teaching job, his soccer coaching pursuits, and our toddler daughter, and you get the culmination of our lives. 

But, for whatever reason, out of whatever choices I've made to this point, my life has been missing something and I haven't quite put my finger on what's absent. A purpose, would probably be a good answer, since I largely have none, aside from guiding my daughter away from sharp corners, cats' claws, towards PBS cartoons and something edible and healthy, hopefully not (always) cheerios.

My daughter, who for the purposes of this blog, I'll call Teenie Bird, (which I picked up after reading her the book, "Teenie Bird: And How She Learned to Fly" by Greet Bosschaert) is a precocious 25-month-old, who dances and laughs, wears sunglasses in the house and memorizes commercials- particularly Papa Johns Pizza - "Papa's House!" and the Luna flooring company, as Luna is the name of one of our three feline stooges.

Teenie Bird's tiny feet

She is adorable and perfect and whole. She is often loud, hilarious, persnickety, incredibly smart, cunning and persistent.

She is also, apparently, not growing. Or not growing fast, which hopefully for all of you, cuts to the quick of my life. Her growth, or lack thereof, is my life. She has remained at an amazingly small stature of 31" for more than 5 months. She managed to maintain the weight of 22 pounds for quite some time before finally putting two more pounds onto her tiny frame. She can still fit into a 6 to 9 month onesie...and for those out of the parenting lingo loop, that's pretty small. Her tiny feet can still fit into the socks she first came home in- (though granted she has stretched them out a bit) a pair of white booties donated by the hospital stitched with the little, yellow numbers- 2009- the year of her birth.

Peeking out the window wearing her infant-sized onesie,

after her decision to barrel through the house without clothes

For the past year, this little child has fought through challenges, jumped hurdles, climbed mountains and literally put one tiny foot in front of the other in her relentless, tireless pursuit of movement, for freedom. We knew something was wrong when she felt limp in our arms, when her arms and legs had a "floppy" sensation to them. We knew the sensation of holding her was different from other babies, as she always felt like she was falling right through, like water through a sieve.

She was a normal birth weight, 8 pds. 1 oz., and height 19.5", but my 3-day labor was difficult, and it ended with an emergency c-section. I suffered from Bells Palsy, placenta abruptio, and blood loss resulting in three blood transfusions. It was the scariest moment of my life, and I know fear when I see it in my husband's eyes. We still felt like kids, like we weren't old enough to be experiencing such life altering moments. After 2 1/2 hours in recovery due to my erratic heartbeat (I was overwhelmed!), I finally met our little Teenie Bird. Everything seemed perfect, and life moved along in a happy blur. We loved her desperately.

By 13 months I was highly concerned because she had yet to crawl. She simply couldn't pick her tiny frame up off the carpet. So, aside from rolling like a little barrel, or dragging herself army-style from spot to spot, she remained largely immobile and would remain in the same spot we placed her.

We switched pediatricians after she turned a year because I felt there was a lack of initiative in the doctor's care; she simply didn't think anything was wrong, and insisted to me that Teenie Bird must learn to crawl and walk on her own. We disagreed, and it was probably one of the most important decisions we've made to date- we knew our daughter, and we knew something wasn't right. The moment we walked into our new doctor's office, the pediatrician immediately said Teenie Bird was dramatically delayed and she would like to have her evaluated by therapists with Easter Seals, an organization which helps people with disabilities live fuller lives.

Lo' and behold, the therapist agreed with the second pediatrician's opinion and said "Your daughter has low-muscle tone throughout her body, even in her mouth." Interestingly, the therapist said anyone who holds her experiences the sensation of "muscle slip-through", where you feel as if the child will slip right through your arms despite your efforts to keep a hold on her.

After more meetings and evaluations we learned Teenie Bird was far more intelligent than her age, often scoring well beyond the typical cognitive capabilities of a 1-year-old, but she was well behind in other areas. Her mouth strength was rated at that of a 4 to 6-month-old child, causing her to gag, choke and throw-up simply because she couldn't manage tough or chewy food; milk and juice often dribbled out of the corners of her mouth, since she was incapable of properly pursing her lips to swallow liquid, and was still months away from handling an open cup or drinking from a straw.

Physical therapy was started immediately and proved to be as hard on me as it was on her. I could hardly stand her cries, her screams as her muscles were forced to crawl, then to stand, and to walk without her ability to do so on her own. At that time, life was hard on her and me, as I would leave my job, take her to PT, where she would kick and scream for an hour, before returning her to the sitter and I would return to work, to my desk to wallow in my Mom-guilt. It was emotionally draining to say the least and we prayed for positive results for all her hard work.

Following two months of weekly therapy she finally, triumphantly and tearfully raised her torso off the ground and began to crawl. I thought I would never see the day, I thought I would never smile so much, or laugh so hard.

At 15 months of age she finally, for the first time, stood up on her own, though her posture was poor, with her little butt sticking out, knees locked in and her chest resting on the coffee table. She simply wasn't strong enough to stand on her own yet.

Mom and Teenie Bird, 15 Months, in April, 2010, standing proud!

It seemed a long time, but really it was only 7 months, when at 22 months of age, she took her first tenuous steps between her father and me. To our great joy she walked a few slow, tiny steps while trick-or-treating on Halloween, 2010, and by November she really gained ground fast and began walking throughout the house.

Trick-or-Treating at Grandma's wearing her Ewok costume

October, 2010

Post-pumpkin carving

Though we have ongoing concerns about her vision and her lazy eye and the staring spells we've witnessed her having, which may be what they call "silent seizures", today she walks freely, (with the help of tiny ankle braces under specially made tennis shoes), but walk she does! Two months ago she was reduced to twice monthly physical therapy sessions. Following a meeting with her therapists just this week, it was recommended she be approved for continuing services provided by the State of Illinois through Early Childhood Connections, which included a recommendation for attendance at a twice-weekly, two-hour Developmental Playgroup for 2-year-olds, who may or may not have disabilities, put on by Easter Seals. Their focus now is on her conquering stairs, climbing up and off the couch, jumping and running.

The therapists and pediatrician are still unwilling to go beyond saying she has anything but low-muscle tone throughout her body. I just wonder if we aren't eventually going to hear more about hypotonia, the definition of which is, essentially, low muscle tone, but to date the doctors seem unwilling to go so far as to officially diagnose her with hypotonia.

So this is our story- it's complicated, it's sad, overwhelming, but it is also joyful, funny and pure. Our life is our daughter, and she is ever-changing, conquering her own little challenges every day. We can't wait to see what her tomorrow holds. Please join us on our journey.

Teenie Bird, reading her library books, March, 2010

Just let me have my cup of tea

Mornings are hard in this drafty house of ours
The cats cries echo with a hollow, aching sound,
knocking against a dream's foggy walls

I roll over & curl up in the heavy quilt my grandmother made,
my wretched knot of a mop of hair
flying, lying all around me

a baby monitor squawks its static noise and soft snores over my head
lying back to back with you, my cold, bare feet to yours
mornings don't seem so insufferable

I believe I can conquer this morning's moment, this day
I can make it more than yesterday
I can make myself new again

You leave for purpose, for wholeness
A great wide expanse of emptiness left beside me
I hear your old truck rattle, crank and shift out the drive

loneliness doesn't stay for long as the dog sneaks up
next to me, curling into a cold hard ball of fur
lying back to back with me

I know I need to rise. I know I need to answer her cries.
I need a moment to be, to think, to find...something.
I stare at the clock, at the ceiling, at the cats obscure stares

Why do my hands always feel empty, even when full?
Please, little girl, little darling tiny one,
just let me have my morning cup of tea.