Let's Be Honest

Long before the cerebral palsy diagnosis, I got over feeling bad for myself, but after the diagnosis came I couldn't seem to grasp what that meant for Tennyson. What would her future look like? Would she ever walk? Would she talk? Will she live with us forever? Will my body be physically capable of caring for her as she grows? I wondered if she would ever do things I loved doing when I was a child. Would she be able to run on the beach and play in the sand? Or ride bikes with other children?

I found myself making doctor appointments for little things because I was still convinced something was wrong with me and it was being missed. During one of the appointments, the doctor asked if I had been under any stress recently. That was all it took. I couldn't even just say the words without crying. Through tears, I told her my daughter was diagnosed with cerebral palsy and I immediately followed it up with how much I loved her and how happy she made us and  how thankful for her we were - in case there was any question. I told her I began having anxiety about her future because we had no idea what it would be like.

Thankfully she said, "I would be worried about you if you weren't having those feelings". I was relieved. She prescribed me an anti-depressant to help with my anxiety attacks and I had to meet with a psychologist once a month for as long as I took them. At first, I was not thrilled about adding another appointment to our already insanely busy therapy and doctor schedule, but after I went to the first therapy session, I knew it was a good thing.

I had no idea my meeting with a psychologist would lead to answers about my health which I was so desperately seeking. During one of the therapy sessions, I mentioned that nobody could tell me what went wrong with my pregnancy. All of the recommended tests came back normal. I wondered if I could have a healthy preganacy. I wondered if it was even safe for me to have future children. Due to that conversation, the psychologist referred me to an OB/GYN doctor so I could talk about my concerns.

I went to the appointment and I felt better after talking with the doctor. She noticed I hadn't been tested for everything that might explain the blood clots in the placenta. She ordered the tests and I had blood drawn. About 6 weeks later, I found out about the MTHFR gene mutation I have and I was finally able to find some peace with what happend. Even though I had more questions, now I had an answer.

I stayed on the anti-depressants for about 4 months. Taking anti-depressants definitely served their purpose and helped me get through one of the most difficult times of my life. For the first time in a long time I saw ME when I looked in the mirror. I felt different about our future and about Tennyson's future - I felt hopeful. I knew I didn't need to stay on the medication long-term, so I stopped taking them. I did not have a history of anxiety before Tennyson's birth. The medication was only necessary for this short transition period.

{word of advice - you should always consult your doctor before you stop taking any medication. I stopped abruptly without consulting my doctor and looking back that was really, really stupid. I had some crazy withdrawl side effects and I won't ever do that again...lesson learned.}

There are two pieces of writing I came across (at different times) that I could identify with. They helped me feel like I was not alone with the feelings I was having in the early days, especially when Tennyson received the diagnosis of cerebral palsy. I want to share them with you. If you are new to the "special needs" community, you might find some comfort in reading them. And even if you aren't, it might help you to understand more of the emotions and phases that people go through. You need to read the first one, to fully understand the second.

Here is the first one:

Welcome To Holland

By Emily Perl Kingsley

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Here is the second:

Amsterdam International

By Dana Nieder

uncommonfeedback@gmail.com

© Dana Nieder 10/2010 All Rights Reserved

Parents of “normal” kids who are friends with parents of kids with special needs often say things like “Wow! How do you do it? I wouldn’t be able to handle everything---you guys are amazing!” (Well, thank you very much.) But there’s no special manual, no magical positive attitude serum, no guide to embodying strength and serenity . . . people just do what they have to do. You rise to the occasion, and embrace your sense of humor (or grow a new one). You come to love your life, and it’s hard to imagine it a different way (although when you try, it may sting a little). But things weren’t always like this . . . at first, you ricocheted around the stages of grief, and it was hard to see the sun through the clouds. And forget the damn tulips or windmills. In the beginning you’re stuck in Amsterdam International Airport. And no one ever talks about how much it sucks.

 
You briskly walk off of the plane into the airport thinking “There-must-be-a-way-to-fix-this-please-please-don’t-make-me-have-to-stay-here-THIS-ISN’T-WHAT-I-WANTED-please-just-take-it-back”. The airport is covered with signs in Dutch that don’t help, and several well-meaning airport professionals try to calm you into realizing that you are here (oh, and since they’re shutting down the airport today, you can never leave. Never never. This is your new reality.). Their tone and smiles are reassuring, and for a moment you feel a little bit more calm . . . but the pit in your stomach doesn’t leave and a new wave of panic isn’t far off.

(Although you don’t know it yet, this will become a pattern. You will often come to a place of almost acceptance, only to quickly re-become devastated or infuriated about this goddamned unfair deviation to Holland. At first this will happen several times a day, but it will taper to several times a week, and then only occasionally.)

A flash of realization---your family and friends are waiting. Some in Italy, some back home . . . all wanting to hear about your arrival in Rome. Now what is there to say? And how do you say it? You settle on leaving an outgoing voicemail that says “We’ve arrived, the flight was fine, more news to come” because really, what else can you say? You’re not even sure what to tell yourself about Holland, let alone your loved ones.

(Although you don’t know it yet, this will become a pattern. How can you talk to people about Holland? If they sweetly offer reassurances, it’s hard to find comfort in them . . . they’ve never been to Holland, after all.

And their attempts at sympathy? While genuine, you don’t need their pity . . . their pity says “Wow, things must really suck for you” . . . and when you’re just trying to hold yourself together, that doesn’t help. When you hear someone else say that things are bad, it’s hard to maintain your denial, to keep up your everything-is-just-fine-thank-you-very-much outer shell. Pity hits too close to home, and you can’t admit to yourself how terrible it feels to be stuck in Holland, because then you will undoubtedly collapse into a pile of raw, wailing agony. So you have to deflect and hold yourself together . . . deflect and hold yourself together.)

You sneak sideways glances at your travel companion, who also was ready for Italy. You have no idea how (s)he’s handling this massive change in plans, and can’t bring yourself to ask. You think “Please, please don’t leave me here. Stay with me. We can find the right things to say to each other, I think. Maybe we can have a good life here.” But the terror of a mutual breakdown, of admitting that you’re deep in a pit of raw misery, of saying it out loud and thereby making it reality, is too strong. So you say nothing.

(Although you don’t know it yet, this may become a pattern. It will get easier with practice, but it will always be difficult to talk with your partner about your residency in Holland. Your emotions won’t often line up---you’ll be accepting things and trying to build a home just as he starts clamoring for appointments with more diplomats who may be able to “fix” it all. And then you’ll switch, you moving into anger and him into acceptance. You will be afraid of sharing your depression, because it might be contagious---how can you share all of the things you hate about Holland without worrying that you’re just showing your partner all of the reasons that he should sink into depression, too?)

And what you keep thinking but can’t bring yourself to say aloud is that you would give anything to go back in time a few months. You wish you never bought the tickets. It seems that no traveler is ever supposed to say “I wish I never even got on the plane. I just want to be back at home.” But it’s true, and it makes you feel terrible about yourself, which is just fantastic . . . a giant dose of guilt is just what a terrified lonely lost tourist needs.

Although you don’t know it yet, this is the part that will fade. After you’re ready, and get out of the airport, you will get to know Holland and you won’t regret the fact that you have traveled. Oh, you will long for Italy from time to time, and want to rage against the unfairness from time to time, but you will get past the little voice that once said “Take this back from me. I don’t want this trip at all.”

Each traveler has to find their own way out of the airport. Some people navigate through the corridors in a pretty direct path (the corridors can lead right in a row: Denial to Anger to Bargaining to Depression to Acceptance). More commonly, you shuffle and wind around . . . leaving the Depression hallway to find yourself somehow back in Anger again. You may be here for months.

But you will leave the airport. You will.

And as you learn more about Holland, and see how much it has to offer, you will grow to love it.

And it will change who you are, for the better.

I hope you enjoyed those two stories. I no longer spend weeks, days, or even hours in the airport. I left the airport. I have airport moments, but even those are few and far between. I hope people realize mental health is a really important issue, not only for new moms, but especially for moms who didn't have a typical experience or typical children. People don't talk about it very often, but there is no shame in getting therapy, or taking anti-depressants. I'm not ashamed to admit I needed some extra help and neither should anyone else.

E-mail me at tennsense@gmail.com with questions or feedback.

Amy

Wait! There Is More Good News!

Well, we have officially started Tennyson on her new medicine - Leucovorin. We wanted to start it last Wednesday, but the medicine had to be special ordered and then compounded (turned into a liquid) since she will take it through her g-tube. We gave her the first dose last Friday evening and I am so excited to see what happens!

Her therapists shared in our joy when we told them the great news. They have invested so much time in Tennyson and it’s wonderful to see them share our excitement. She has wonderful therapists. We recorded some of her therapy sessions last week to evaluate her skills. This way we have a baseline to compare any progress she makes.

Here is some of the video so you can get an idea of her physical capabilities:

I think it is beneficial for you to see what she does now so you can see her progress when it happens.

It’s difficult for me to imagine Tennyson different than she is now. It’s hard to imagine her mobile and talking, but I am hopeful she will make progress. I’m excited to know more about my daughter – like her favorite color, toy, and food. I’m excited to hear her sweet voice. I’m excited to help her learn to use her body so she can move where she wants to go.

It seems the good news just keeps on coming! Yesterday we traveled to UNC in Chapel Hill for Tennyson to have a modified barium swallow study (also known as a video fluoroscopic swallow study). A swallow study is when a liquid (barium) is given by mouth to see if it is being swallowed properly or if it is going into her airway when she swallows. The barium shows up on a screen of what looks like a continuous x-ray. The entire anatomy of her mouth and throat can be seen, including where the barium goes when she swallows.

Ideally during a study, a child would sit still and swallow liquids of different consistencies, following commands to open their mouth and swallow when instructed. Tennyson didn’t get that memo.

Our swallow study went something like this:

As soon as we walked into the room, the whining began. Despite my attempts to fool her with my excited voice and saying “we are going to have fun!!!” she moved into hysterical crying. My promise of warm milk certainly didn’t change her mind. I sat her in the chair and she began “the silent cry” – you know, the one where their mouth is open and nothing is coming out because they are going to “SCREAM CRY” the next breath they take?  The bottle was prepared and I stood in front of her trying to coax her to take a few sips from the bottle.

{Recently, she enjoys drinking from her bottle because there hasn’t been pressure for her to drink large amounts now that she has a g-tube.}

After about 5 minutes of crying and attempts to help her wrap her lips around the bottle, I asked to give her a break to see if she would calm down and get down to business. We sang a few favorite songs and I was able to make the tears stop. She gave me a few giggles. I thought she was going to be okay, but as soon as I offered the bottle the tears flowed freely again.

Plan B was put into action. I had to pour the liquid into her mouth with a spoon while she cried and then wait for her to choke it down between gasps of air. {Sounds fun, huh?} I poured about 4 spoonfuls into her mouth and the torture was over – for both of us. Thank God.  She was sweating from crying. I was sweating from trying to stop her from crying. We were pretty exhausted by that point.

Tennyson has never passed a swallow study in her life – UNTIL YESTERDAY! Even through the hysterical crying, she managed to protect her airway when she swallowed the thin liquid. I guess the results made it all worth it. No liquid went into her airway when she swallowed. It’s exciting to know that she is protecting her airway and we can move forward with feeding therapy knowing she is safe. This was scheduled as a follow up from her laryngeal cleft repair last May. It can take anywhere from 3-6 months to see optimal results from the repair. Looks like it worked! On a side note, Tenn still has reflux, but the swallow study shows that she is not aspirating liquids into her lungs.

Amy

e-mail me at tennsense@gmail.com with feedback or questions.

The Results Are In

I know a lot of you have been anxiously waiting for Tennyson's lumbar puncture results right along with us for the past two weeks. I know you have been praying for her and I want to thank you for any time you spent praying to God on Tennyson's behalf.

Tonight we received the news we have all been praying for! Tennyson will be treated for cerebral folate deficiency! I can't even describe the happiness our entire family is feeling right now.

I'm writing through tears right now - happy tears - but I can't seem to control this renewed sense of hope and confirmation that God is faithful and has an incredible plan for this little girl.

This is how I found out tonight:

I called earlier this morning to check if the results came in yet. Nobody answered so I left a message. When 4:30 p.m. rolled around, I figured I wouldn't hear from anyone and decided to just check back tomorrow. I needed to go to the grocery store, so I left the sweet girl with the husband and headed to Walmart to shop in peace. I was on the phone when they called and I had to hang up quick with Tennyson's Nana so I could get the call. Eeeek! They were calling!

I answered the call and it was our neurology nurse practitioner (we like her) and she let me know she literally received the test results about 5 minutes before she called me.

Eeeek! She had the results!!!! She said they wanted to treat Tennyson for cerebral folate deficiency! I think I squeaked out, "that's so cool!", and already started crying.

She said that the normal range for folic acid was between 40 and 150. Low numbers are more deficient; higher numbers are less deficient. Tennyson's results came back with her level at 46. She is considered borderline deficient, but the doctor whom reviewed her results recommended treatment. She also mentioned the doctor was a top specialist on CFD and I couldn't have asked for a better doctor to be reviewing Tennyson's results. She said they were hopeful for Tennyson to make progress once we began treatment. We start treatment tomorrow! She already faxed in the prescription to our pharmacy.

I'm sure I looked a little mentally unstable as I was tearfully grocery shopping this evening. I was overcome with emotion. I don't think I realized how badly I wanted this for Tennyson. It's an incredible feeling to feel hope again. I mean, I've always had hope for Tennyson's progress, but this just feels differentt. I think it's because the doctors sound so hopeful. They are usually more reserved. I might get to hear my daughter say, "I love you", or have her reach out to give me a hug, or watch her learn to walk. Those were things I never realized I wanted so badly.

My mind just raced with all the things that she could potentially do. At one moment, I realized I was just standing in the produce section staring at the floor with tears on my cheeks. I was probably starting to scare people. My husband called and I told him the good news. When I got home and walked through the door, we all hugged each other as I held Tennyson.

Tomorrow is the first day of the rest of our lives. I have a feeling we are all about to witness a miracle and I'm so excited all of you will be right here to witness it with us!

e-mail me at tennsense@gmail.com with questions or feedback!

Amy

My Music Baby

There is something unique about Tennyson when it comes to music. She always has music around her, whether I’m singing a good morning song, or playing a children’s CD (my husband’s fave!) in the car, or going to Kindermusik classes . . . she’s always been around it. We sing when we change diapers or get dressed, we sing when she gets a bath, or when she’s drinking a bottle. The more I think about it, I sing a lot to her. It’s something that is calming to her and she always seems to smile when we sing. Her favorite song for a long time has been, “Twinkle, Twinkle, Little Star”.

I can’t take any credit for what you are about to see, though, because she doesn’t do this when I sing! {Thank goodness!!}

We first noticed this around the time she was 15 months old. It was Christmas time and there was a Susan Boyle song on. Out of nowhere she started to cry. She was inconsolable. It was bazaar. She had never acted like that. It took us a few minutes to figure out why she was crying, but we eventually turned the music off and she stopped crying. We turned the music back on and she started crying again. We turned it off and she stopped. We sang the same song to her and she began crying again. We were really confused why Susan Boyle had made our daughter so emotional. And there always seems to be a lingering effect and if Tennyson hears a small piece of the song, hours later, she immediately returns to the emotional state she was in. {I also found it interesting that Susan Boyle endured a lack of sufficient oxygen during her birth as well.}

For awhile it was only Susan Boyle that could make her cry. Soon, it was commercials, American Idol singers (like Pia – the ballad singer, was a sure bet for tears), and most recently Adele. We showed our family and for the most part, she repeated what we had seen. But isn’t it “Baby Law” to make little liars out of parents when they want a baby to do something on command for someone else? Tennyson can get very excited when she hears songs like “I Gotta Feeling” by the Black Eyed Peas and sad when she hears “Someone Like You” by Adele.

Some family members wanted to see a video of it, so my husband took this video:

After watching that video, some thought she had been swayed by my husband’s voice, so he took another video while Tennyson’s Nana was visiting. In order to show that no provoking of emotion had occurred, there was no talking allowed.

Here is the second video:

We mention it to doctors from time to time to see if they have any interest or can offer more information, but so far nobody seems to have any explanation. We have yet to meet anyone else who has a child that reacts in such an emotional way to music. Thought you all might find it interesting as well!

From our own research, we know that music can stimulate emotions in the brain. The Book “Musicophilia” by Oliver Sacks (a neurologist) was recommended to us when we mentioned this to an EEG technician while she was in the hospital for her seizures. It is a book all about music and the brain. Sacks writes, “While music can affect all of us – calm us, animate us, comfort us, thrill us, or serve to organize and synchronize us at work or play – it may be especially powerful and have great therapeutic potential for patients with a variety of neurological conditions.”

One thing you might find particularly interesting if you have a loved one who has dementia or Alzheimer’s is that, “the response to music is preserved, even when dementia is very advanced. Musical perception, musical sensibility, musical emotion, and musical memory can survive long after other forms of memory have disappeared. Music of the right kind can serve to orient and anchor a patient when almost nothing else can (Sacks, 2007).”

I would be interested to know if anyone reading has had similar sad emotional reactions with their child and music. Although we do not fully know Tennyson’s capabilities and limitations, we do know she responds to music differently than most children her age. She has really good taste and connects to emotional singers quickly. Whether she will be able to sing well or play music in the future is something we will have to wait and see (or hear).

E-mail me at tennsense@gmail.com with feedback or questions.

Amy

The First Year

September 2009 was the start of our new life as a family. We brought Tennyson home from the hospital after a 3 week stay in the NICU and we were sent home with a long list of follow-up appointments she needed to go to. She had to go to the eye doctor, audiology, cardiology, her pediatrician, neonatologist, neurologist, and be enrolled in early intervention services. In the first month alone, she had more doctor appointments than most babies have in their first year.

One month old

To be honest though, she was a very different baby than the one we got to know in the hospital. She was thriving! She gained an entire pound during her first week home! She got big squishy cheeks and although she didn’t have any baby fat rolls, she looked really healthy. She settled into a good routine and we were genuinely enjoying getting to know her personality and being new parents. I loved dressing her up and giving her baths and snuggling with her in the mornings. As new parents we were exhausted and sleep deprived because we couldn’t get more than 2 hours of consecutive sleep at a time. It’s truly amazing how much you don’t appreciate sleep until you don’t get to sleep anymore. All those times I was able to sleep in, uninterrupted, until noon, were completely taken for granted.

6 weeks old

The first month home was an adjustment. My husband was back at work full time while I stayed at home and cared for Tennyson. She went home from the hospital on two seizure medicines and I worried regularly she would have a seizure while I was home alone with her. I was completely in love with my little girl. She had given us such clarity on what was really important in life. It was getting hard to believe the poor prognosis that had been given to her in the hospital. I hated taking her to the doctor. I always worried she would pick up a cold or a virus. {I don’t know why complete strangers think it’s okay to touch your baby!} The doctors would pull her legs and arms every which way in order to determine if her muscles had high or low tone, or if her body was regulating it properly. They checked reflexes and her eye tracking. Everyone was constantly evaluating her, writing down their own opinions and it was hard not to take their opinions personally. The doctors told me how critical the first two years were and I felt enormous pressure that my actions would directly affect how much she would be able to do later in life.

2 months old

One of the first times I left the house alone, I went to Walmart. Tenn was with the husband. I don’t know if it was just having the chance to be alone with my own thoughts for the first time or if I was just emotional in general, but I just sat in the parking lot and cried. I called my mom and told her I didn’t want to take Tennyson to any more appointments and that I hated taking her to them.  She told me I had to take her to them, and I knew I did, but I didn’t want to hear any more bad news. It was emotionally draining. Eventually I got used to hearing the same things . . .  “she has tight hips”, “she needs to work on her head control”, “her head isn’t growing at a normal rate.” I was doing everything and more they were telling me to do.

Tennyson's first Halloween

We moved from Kentucky to North Carolina when Tennyson was 3 months old. Moving with an infant was quite an experience. Looking back, I don’t even know how we did it! But we did. We transferred all of her medical care and doctors and set up new early intervention services.

Sleeping with Daddy

We went home for Christmas to introduce Tennyson to our family and friends that hadn’t met her yet. She did great. She started sleeping through the night while we were on that trip. She continued to sleep great for us when we returned home, which was a very welcome change.

3 months old

When I was pregnant I worried about random stuff . . . will she be good at sports, will she be smart, but never worried if her head will grow. When doctors started mentioning she may have microcephaly, I looked it up on google and did an image search. Worst idea ever. It scared me to death! I searched how to make the brain grow, like foods, and I couldn’t find anything that can make the brain grow. It was a really helpless feeling. I would measure her head before appointments to see if I was getting the same measurements as they were. I would argue with nurses over a quarter of a centimeter when we had different measurements. When I would give her a bath at night I’d say, “let’s wash your hair with the magic head growing shampoo”. I became obsessed with measuring her head and trying to explain away why she wasn’t catching up on the growth chart. I prayed a lot at night. I would fall asleep praying for her head to grow. But it just didn’t grow. She was diagnosed with microcephaly at 4 months of age by her neurologist.  She had x-rays taken to see if her sutures in her head had fused early which would prevent her brain from being able to grow, but the sutures were open. Eventually I just had to get over the fact that I couldn’t do anything to make her brain grow. That was hard. That was the first visual sign for me that her brain was damaged. Nobody could really tell by looking at her until about 9 or 10 months of age, when she was growing long, that there was something disproportionate about her body.

3 months old (again)

When a baby is born prematurely, his or her progress is tracked by two different ages: the real age and the adjusted age. To get a baby’s adjusted age, you subtract however many weeks early he or she is from the actual age. Tennyson was born 5 weeks early. So if her real age was 5 months (20 weeks) subtract 5 weeks from that and she would have been 15 weeks – or just at the end of 3 months for her adjusted age. I took it further than the doctors did though. When Tenn was born she was the size of a 30 week gestation baby so I subtracted another 5 weeks (from 20 weeks minus 5 for her adjusted age) and then I took into account that she just laid in the hospital for 3 weeks, so I would subtract 3 more weeks. So while everyone else expected her to be meeting 3 month old milestones, I gave her the benefit of the doubt and expected her to be at a 7 week old.

This helped me not worry too much when she failed to meet everyone else’s expectations. She started smiling around 3 ½ months old and I finally heard that sweet little giggle at 4months of age.

4 months old

She started physical therapy in January at 4 months old. She started out with an hour a week. Things were going well and although she wasn’t meeting milestones according to her real age, she wasn’t too far behind her adjusted age. She did show some improvement though.

That all changed when she hit 5 months of age. Her development for gross motor skills (sitting, crawling, and standing) came to a standstill. She also, had yet to develop any fine motor skills (talking and grasping) and still wasn’t reaching for toys. Her arms stayed by her sides. Even though she could track a toy visually, she never reached for them. Most of her physical therapy sessions were spent going through the motions of rolling over and deep stretching to loosen her muscles.

Tennyson at 5 months old

When her development stalled, I began to have anxiety attacks. I would wake up in the middle of the night and I literally thought I was going to die. My heart would beat so hard in my chest that I couldn’t think rationally about what was happening. At that time, I was still waiting for doctors to find answers about what had gone wrong with the placenta and why it had blood clots. The biopsy that came back from the placenta said I needed to be tested for blood clotting disorders, like lupus and protein C and S deficiencies. I lost my trust in doctors after Tennyson’s birth. I felt like they were missing something that could be wrong with me. I worried about blood clots constantly and was scared I would have a stroke. I ended up going to the emergency department one night because of chest pains and they did a full work up on me. They said I was healthy. It was really hard for me to believe them. I wouldn’t get any answers for another year.

{Just so you know, the night I made my husband go the emergency room with me, was the night the Saints won the Super Bowl! He missed the whole second half. What a guy!}

At 5 months old, I got Tennyson into occupational therapy as well as play therapy. I also enrolled her in Kindermusik classes. If Tennyson’s mind and body needed to be stimulated constantly in order to develop, then that’s what I was going to set up for her. She enjoyed her weekly music classes and it was our first chance to do something that “everyone else” was doing with their baby. It was fun and she responded with smiles and giggles. I really enjoyed the social part of it as well.

Getting bigger! 6 months old and so happy!

I worked with Tennyson for hours each day. Stretching, going through the motions of rolling, working on her visual tracking, and tummy time (which she absolutely hated!). I would put her on an exercise ball and use the law of gravity to stretch her muscles. She fell asleep each night and I stretched her for the second time. Still, there was no major development. Slowly it became obvious that Tennyson wouldn’t be like other kids. She wasn’t going to just be a little behind. I began to realize that development charts weren’t going to do anything, but make me think of her deficiencies. I put away the books on development and I focused on what she was doing, rather than what she was supposed to be doing. I listened to what doctors and therapists said about Tennyson and not a word that didn’t apply to her.

7 months old

At 7 months, she still wasn’t reaching for toys. Over and over and over and over I would place her hands on toys - showing her that she could hold them and play with them if she used her hands. When we learned that she was farsighted and had astigmatism, I special ordered her eyeglasses in hopes that allowing her to see clearly was all she needed to grab toys. She looked adorable in her glasses, but they didn’t make her want to grab toys yet.

8 months old

Then one day, around 9 months old, she did it. She grabbed a toy! It was the coolest moment! I was so incredibly happy. Not many other parents could appreciate what that meant to us. I bet I put her hands on those toys thousands of times. In my mind, I remember thinking, if I have to do every little skill thousands of times for her to learn it, I’ll do it. If that’s what she needs, I’ll do it. If that’s how her brain learns, I’ll do it.

We took a break from doctor appointments and therapies and went home for the summer to see family and friends in 2010. It was wonderful to have a mental break from all the evaluations and doctor appointments and a physical break because everyone wanted to get their hands on my sweet girl.

9 months old

We returned back to North Carolina and jumped back into a new routine with more therapies and new therapists. At that time, Tennyson was receiving about 6-7 therapies at our home a week. She wasn’t talking or sitting independently, and although she started to roll from her back to her tummy, that skill disappeared by the time she was around 11 months old. It was frustrating. We were both working so hard and it was certainly not her fault that her body wasn’t cooperating.

10 months old

I knew what was coming. I didn’t want to ask the question, but the time had come to just ask it and get it out there. I had an appointment with Tennyson’s developmental pediatrician. I asked her if Tennyson’s H.I.E. diagnosis would encompass her muscle tone issues or if I could expect another diagnosis soon. She said, “Are you talking about cerebral palsy?” and I told her, “Yes”. She said that in her opinion Tennyson would be diagnosed with cerebral palsy. I remember asking her if she could outgrow that diagnosis. She was honest and said that it was not likely she would.

11 months old

About a month later, the day before her first birthday, we saw her neurologist. My Mom came to visit for Tennyson’s birthday so she went with me to the appointment. I had a long list of questions for him and my Mom held Tennyson while I spoke with him. I worked my way down the list and eventually near the bottom was the same question I asked Tennyson’s developmental pediatrician. I could tell he was trying to be gentle in the way he was telling me what he was telling me. I thought I was prepared for the diagnosis, but I don’t think I was prepared to actually hear him say the words, “Your daughter has spastic diplegia cerebral palsy”. I was done with my list of questions and we talked for a few minutes about what that diagnosis meant and then we were finished. I didn’t cry in the office, but I did when we got outside. I’m thankful my Mom was there with me again. Mom always knows what to say. She said, “Look at her. She’s the same baby she was before we went in there - she’s no different”. She was right. I didn’t love her less or differently just because of a new label a doctor gave her. Life didn’t stop with a new diagnosis and so we kept on going.

Tennyson at her 1st birthday party

We celebrated her first birthday with my Mom and Tennyson’s Uncle and close friends. We reflected on where we were a year prior and just how far she had come in one year. She had a great party and looked absolutely adorable. We helped her open presents and ate cupcakes and pizza. We took a lot of photos and video. It was such a fun day!

For a girl so small at birth, she had come so far. Tennyson, has improved our lives tremendously. We have received many blessings and had many prayers answered.  

E-mail me at tennsens@gmail.com with any questions or feedback.

Amy

What's Not Wrong With Her

“What’s wrong with her?” If you ask me this question, I’m likely going to ask you, “What’s wrong with you?” There is nothing wrong with Tennyson - maybe different, but certainly not wrong. She is my normal. Even if it’s different to you, it feels normal to me. One scenario is typical for us: someone will ask, “how old is your little girl?” and I tell them how old she is, and they just say, “ooohhh.” It usually ends there. They have a sort of dumbstruck look on their face as they try and figure out what’s wrong with my sweet girl – trying to figure out why she isn’t doing what they expect her to be doing for that age. One time on a cross country flight, a flight attendant asked me if I had Tennyson tested for developmental delays. As if I wasn’t aware my child has developmental delays. I should have told her I just hadn’t gotten around to it, just to see her expression. Thanks, lady. I know this is a difficult question for an observer to ask, but there are better ways to approach us so my protective mommy instincts don’t kick in.

The best approach someone had with Tennyson was a nice compliment and then they simply asked, “May I ask what her diagnosis is?” At least she gave me more credit than the flight attendant did. She was just being curious and wanted to know more.

You won’t have to ask me, though, because her diagnoses are what I want to share with you today. Since one of the main reasons I started this whole blogging adventure is to educate people who want to know about her, it seems appropriate, rather than leaving you wondering. I have to admit, before I had Tennyson, I had no clue what any of these conditions were.

I guess I’ll start in order of appearance:

Severe IUGR:

Tennyson was diagnosed with this almost immediately after her birth. IUGR stands for Inter Uterine Growth Restriction (or Retardation, but I don’t prefer that word). It refers to the poor growth of a baby in the mother’s womb. The most common cause is a problem with the placenta. It can also be caused by infection, high blood pressure, smoking, drinking alcohol, abusing drugs, heart or kidney disease, or if you are having multiples (twins, triplets…etc.).

Tennyson on her birthday (to show you just how small she was!)

Hypoxic Ischemic Encephalopathy:

I talked about this diagnosis at the end of Tennyson’s birth story. She was diagnosed with this at 2 weeks of age. Broken down it means: Hypoxic: lack of oxygen, Ischemic: lack of blood, Encephalopathy: a specific brain injury. In other words, a brain injury caused by lack of oxygen and blood flow. When a baby’s brain has suffered from a lack of oxygen, it’s common for the baby to have seizures, have low APGAR scores, have varying muscle tone and reflexes (all of which Tennyson had). There are 3 degrees of HIE: mild, moderate, and severe. Tennyson was classified as having mild/moderate HIE.

Microcephaly:

Microcephaly is when the brain does not grow at a normal rate. Head circumference is measured from the forehead to the farthest point in the back of the head and is plotted on a growth chart. Tennyson was diagnosed with this at 4 months of age. There were concerns about her head circumference from about 2 months of age. Her head circumference at birth was 28 centimeters. Her head circumference now is 39 centimeters. A typical growth rate for a baby’s head is 1.5 to 2.5 centimeters a month. Her head size right now is the size that a typical baby’s head would be at 3 months of age. Tennyson is 28 months old.

GERD:

GERD stands for Gastroesophageal Reflux Disease. GERD is when the contents of the stomach go backwards into the esophagus. Tennyson was diagnosed “officially” at around 15 months…but we have been dealing with the effects of acid reflux since she was about 3 months old. She was put on her first reflux medicine, zantac, then prevacid, now she is on prilosec (among other meds). She has constantly had issues with spit-up and throw-up. There have been some scary throw-ups when she stopped breathing and it was so violent it came out her nose. Thank God for bulb syringes in those moments. They can save lives. Seriously. We worry about aspiration and because we know she does aspirate (when her food goes into her airway, rather than her esophagus) she has had multiple swallow studies.

Intermittent Esophoria:

This diagnosis came unexpectedly when Tennyson was 7 months old. Since Tenn was born early, her eyes were monitored for vision problems. Premature babies in general are more susceptible to vision problems since their eyes have not finished developing. It was determined early on, at 2 months of age, that her vision was good, a follow up at 3 months showed the same. Sometimes we noticed one of her eyes turned in when she was tired. When I asked the Ophthalmologist about this he did a really thorough exam and was able to see it. Intermittent Esophoria is when both eyes are open and can focus on a visual target, but occasionally one eye turns inward. This is improving as her eyes get stronger. She has prescription eyeglasses for farsightedness and astigmatism.

Tennyson - 4 months (example of intermittent esophoria)

Cerebral Palsy:

This is the diagnosis I knew in the back of my mind that was coming, but feared the most. Tennyson was diagnosed the day before her first birthday. Some children are bound to a wheelchair while others are much more functioning, but CP doesn’t necessarily mean the child isn’t smart or able to communicate.

CP occurs in about 1 out of every 1,000 births. Cerebral palsy is not progressive (it doesn’t get worse over time). You can’t catch it from anyone; you can’t test for it before your baby is born (I’ve been asked that one before). There is no cure - only management of the symptoms.  Cerebral Palsy is caused by an injury to the motor control areas of the brain. This can be anything from a lack of oxygen, a stroke, a brain bleed, a head injury, or an infection. CP prevents the brain from communicating with the muscles properly. I always think of it as the brain speaking English, but the muscles only understand Spanish. So any command the brain sends to the muscles, they don’t respond properly. There are different degrees of CP and different types. Cognitive ability is sometimes affected, but not in every case.

Tennyson has been diagnosed with Spastic Diplegia Cerebral Palsy. Spastic means muscle tightness. Diplegia CP means that it affects 2 of her limbs (the bottom half of her body). We are anticipating her diagnosis will eventually change to Quadriplegia Cerebral Palsy because she doesn’t move her arms or her legs typically. Quadriplegia CP means all 4 of her limbs are affected. She has the motor skills of a 5 month old. She doesn’t sit unsupported, crawl, bear weight on her legs, stand, or walk…yet. We learned early on that typical developmental timelines don’t apply to Tennyson. She is on her own timeline. But she is smart! She has a good understanding of the words and commands we say to her. She gets it.  

Oral Aversion & Dysphasia:

Imagine never enjoying food. Any experience with your mouth is unpleasant or painful and you never feel good because you are constantly throwing up. As adults, we know food is good. It brings us pleasure and it tastes good. It makes us feel good to fill our stomachs. A baby with oral aversion doesn’t know this because she hasn’t had any positive experiences with food. An adult will find a way to eat, but a baby will simply stop eating. That’s what happened to Tennyson. Oral aversion is a defensive behavior. Dysphasia complicates it by making it difficult to swallow safely and control food and saliva in the mouth. We have gone through phases of having to thicken her milk. She is on an all liquid diet, but we are making a lot of progress with her interest in food since she has had a G-tube placed. A G-tube is short for gastrostomy tube. It is a feeding tube that allows us to pump food directly into Tenn’s stomach and bypass her mouth.

Laryngeal Cleft (Type 2):

I never expected this diagnosis. This condition was found during an airway study last April. When a person swallows, there is a flap that covers the airway so the saliva or food goes into the stomach. That flap prevents food from going into the lungs. Tennyson’s “flap” had a hole in it. The “type 2” designates the size of the cleft. It can range from type 1 to type 4; the smaller the number the smaller the cleft. She had surgery last May to sew the 2 sides of the cleft together. She was one of the first children in the country to have her cleft repaired by a robot. We were told she had quite an audience of doctors and surgeons during her surgery. It healed perfectly and the hope is that she will eventually not aspirate any food or liquids.

Tennyson after her laryngeal cleft repair, May 2011

 Speech Apraxia:

As we neared the end of Tennyson’s first year, it was clear that Tennyson was developmentally delayed, so this was a diagnosis I expected. Speech Apraxia has to do with motor planning. Tennyson has been in speech therapy since 18 months of age (the earliest our insurance would cover it). She get’s speech therapy 2 times a week in our home and she is making progress. It was pretty clear from the start of speech therapy that Tennyson wanted to talk and copy what we were asking her to do. She has difficulty with the motor planning part of it, where her brain tells her muscles what to do to create the sounds she wants to.

Epilepsy:

By definition epilepsy is, “a brain disorder in which a person has repeated seizures over time” (2 or more seizures without an explainable cause). Although Tenny had seizures at birth, they were explained by her brain injury. They were well controlled and she was off her seizure meds by 4 months of age. She had one seizure at 8 months of age due to a high fever (this is a febrile seizure), but I honestly believed she would not have epilepsy. Last July she began having seizures regularly. They have been difficult to control. Her neurologist team has diagnosed them as “tonic spasms”. As a side note, infantile spasms are the worst kind of seizures and her tonic spasms are very similar and if uncontrolled could progress to infantile spasms.

Chromosome Abnormality:

I never expected this one either. We were referred to Genetics by our GI doctor.  Our GI doc thought it would be a good idea to see if there was anything metabolic going on genetically that was preventing her from wanting or being able to eat. Nothing was found that would help us with her feeding issues, but they did find a chromosome abnormality. It’s so rare, that Tennyson is only the 2^nd child in the world to be documented with it. There is another little boy in Finland who has it, but Tennyson is the only (documented) girl in the world with it. On one of her 19^th chromosomes, there is a small section of genes that is duplicated. It is called a micro-duplication. Because of the genes that are duplicated, they have told us that it could put her at a higher risk for heart problems or childhood cancers. After testing, however, Tennyson does not have any major problems like that.

Let me know if you have any questions about anything! I’d be happy to answer them! E-mail me at tennsense@gmail.com. Thanks for reading!

Amy

Why We Were at the Hospital (again) Today

Many of you wanted to know how Tennyson is doing now after reading her birth story. Overall she is doing well. I will continue with Tennyson’s history in the coming weeks, but I’ll share something current about her today.

I haven’t shared this with anyone except our close family and friends. Not for any significant reason other than it’s somewhat complex to explain.

Now that you know Tennyson’s story, you know that she was born really small. She was small because she was growth restricted. She was growth restricted because there were blood clots in the placenta. There were blood clots in the placenta most likely because of a gene mutation I have that was found months after her birth.

You have probably never heard of it, but some of you may have. The MTHFR (Methylene Tetrahydrafolate Reductase) gene helps the body breakdown and absorb folic acid and vitamin B. When a person has the gene mutation, the body may not produce the enzyme that breaks down and helps absorb those essential nutrients properly. I am a homozygous carrier of the MTHFR, meaning both copies of my gene are “mutated”.

Most of the time, women only find out they have it because they are unable to conceive or carry a pregnancy to term. In my case, I have been told it could be a relatively easy fix. I take a folic acid supplement. The idea is that if I take 10 times more folic acid that my body will hopefully absorb the proper amount like someone without the gene mutation.

So, what does this have to do with Tennyson?

Since I have 2 gene mutations, I know I have passed one of those on to Tennyson.

Less than a month ago, I came across a condition called Cerebral Folate Deficiency. As I was reading about it, a lot of the symptoms were similar to Tennyson’s. Her head slowed in growth at around 3-4 months of age. Her gross motor skills stalled at 5 months of age (and have remained there). She has delayed speech, she has irritable sleep, she started having seizures. She has spasticity in her muscles, but overall has low muscle tone. These are all symptomatic of CFD.

It was like I was reading about Tennyson in this medical article. I asked my husband to read it and he agreed. We both know all of Tennyson's symptoms can be attributed to cerebral palsy and the lack of oxygen and blood she suffered in utero or in the hours leading up to her birth. Some can also be attributed, however, to insufficient folic acid.

So I printed off my articles and underlined in RED every single thing that was similar between Tennyson and CFD.  I made an appointment with our neurology team. I rehearsed what I would say to them so they didn’t think I was a crazy mom who wanted her daughter tested for random conditions she found on the internet. I didn’t need to fight though! They thought it sounded reasonable to test her for it. Our neurology nurse practicioner pulled in a few other neurologists and did an exam. They went back and looked through old labwork and found indicators that she might have this deficiency.

I am glad I didn’t ignore how similar her symptoms were to this condition. I am not saying she has Cerebral Folate Deficiency. I am saying I have to be her advocate and find out if she does. It is my job to make sure she has all the tools she needs to reach her full potential – whatever that may be.  

The only way to test for CFD is through a lumbar puncture (drawing spinal fluid). The gene mutation can impair transport of folate from the blood to the brain. So brain levels of folate can be low, even if blood levels of folate are not.

That’s why we were at the hospital this morning. She had spinal fluid drawn and it will be tested. The team that was with her this morning said it couldn’t have gone better. I was only in the waiting room for about 10 minutes when they came out to tell me she was finished. The longest part was waiting for her to wake up from the anesthesia. Now, we have to wait two whole weeks before we know the results. I’m not going to lie, if she does have CFD, I will be pretty excited. If she doesn’t, it’s just one more thing we will know she doesn’t have. So I’m looking at it as a win-win situation. No disappointment.

Tennyson sleeping after her lumbar puncture

I want her to have this condition. I have been praying and praying and praying she has this! Why? Because it can be treated! Children with CFD that are given folinic acid (not folic acid) have made dramatic improvements within as little as a week of treatment beginning. Seizures can stop. Muscle tone can regulate. Speech and motor skills can progress. It would be pretty darn cool to see dramatic progress. As long as CFD is caught before the age of six, symptoms can reverse. After age 6, most kids do not have improvement with treatment.

I also want to share that this information might be helpful for people with children on the Autism spectrum. A lot of my reading on CFD talked about autism. This very recent article I found states that more children with autism spectrum disorders might actually have CFD. With proper diagnosis  of CFD and treatment, some children “showed  improvements  in seizures, attention, motor skills, neurological abnormalities, verbalizations, perseverative behavior, restricted interests, and social interaction in some children with autism.”

I hope this helps someone. Even if Tennyson doesn’t have it, it’s just another reminder that as parents we should always be the best advocates for our children.

e-mail me at tennsense@gmail.com with any feedback. I read it all.

Amy