This week I’m… adding glasses to May’s cuteness arsenal (Photos!)

Last night, in anticipation of the arrival of May’s glasses today, I asked to my husband, “Do you think the glasses will make a difference?”

“No,” he said, bluntly.

I made a kind of hmmm sound. The kind of sound wives make to husbands when a “no” isn’t quite a sufficiently long enough response.

He looked up at me, since I was still looking at him, thought better of it, and continued. “Noooo, but I hope.”

Like him, I can’t expect much more than that.

I picked up the glasses today, less than two weeks after doctors discovered she has an astigmatism. Just as you are, I saw her in them for the first time today. I hope hope hope this makes a difference. So, what do I think of them so far?

Hmmm. Very cute.

This slideshow requires JavaScript.

Want May to win Best Special Needs Blog at Parents Magazine? The easiest way to vote is to register with your Facebook, Twitter or email account when prompted. May thanks you for your vote: Bounce!Bounce!Bounce!

Read Full Post »

Social Services and the Case of the Respite Request

You know why I love social services so much? Because working with them is an adventure; I never know what to expect next. What fun! Plus, I get to really focus on what May can’t do. That’s something I love doing.

Today, a social worker called to confirm an appointment. Her call was the first I heard of it. Today. An appointment at 3.00 today.

I couldn’t figure out what this appointment could be for. Then, I had a sudden realization, “Wait! Is this about respite care for May?”

Turns out it was. So, I said I was free.

The information the social worker collects goes to a panel later this week. There some people, as always strangers who have never met May, will decide exactly how many hours of help we need assistance with, based on a report compiled after our 40 minute meeting.

It doesn’t instill you with much confidence does it?

Me neither. And, given our previous experience with Social Services, I expected the worst. I was actually nervous. While Ieuan took a nap, I went outside and paced in the sunshine creating a list in my mind of reasons we need respite care. Newborn baby. May’s increasing heaviness. Not enough time to do basic stretches. Need someone to assist for the safety of both children while I’m concentrating on one. That I want just one cup of tea without being interrupted. Just one.

Is that too much to ask?

Here is where this post turns bizarre. I LIKED the social worker. I don’t think she’d be for everyone with her blunt mannerisms, dark sense of humor and business-like professionalism, but that is exactly what I want in a social worker. I want someone who will say, “On the form it asks about communication. I’m just going to write, ‘none’ and fill in the rest on your behalf later using the medical reports.”

Hello? What? Honest, to the point and helpful all at once? A social worker entered my home and had already read May’s case history. She did not ask me a single thing about the birth. She had handwritten notes on May’s reports. I didn’t need to explain anything except where she didn’t know what to say without asking me.

I thanked her. Repeatedly.

She acted like it was all part of the job. She doesn’t realize how rare it is that people do their job.

From her chair, one which reclined comfortably and she said she may never leave, the social worker snorted a chuckle. “It says here, ‘Did you meet with the applicant alone?’ as if May and I would arrange to meet!”

“Next time, I’ll leave you two be,” I said, “and you can meet for coffee.”

She chuckled again. This woman, with her notes and strong demeanor is what I have been fearing for so long. Good news for once from the department that trains the so-called experts.

We should find out in the next week what kind of respite comes from the report.

Want to read more from Stacie? Check out her posts on BabyCenter’s Momformation!

Read Full Post »

May needs glasses! Woohoo!

I shouldn’t get too excited. The Prof even told me not to get too excited. (Side Note: You know they are medical big wigs when… everyone calls them The Prof or The Boss.)

I took May into Morefields Eye Hospital this week to get her eyes checked. The doctor in charge of the Developmental Vision Clinic at Great Ormond Street recommended attending the clinic. She said they would be sympathetic to May’s developmental problems and not shrug off my attempts to improve her vision with a flippant “there is no point” comment like we’ve received in the past.

The Prof didn’t shrug me off. He was honest. That’s different.

May has an astigmatism. That’s a fairly common eye problem. This means May finds it difficult to see fine details, and things look blurry.

Wouldn’t it be amazing if that was, even partially, the trouble with her vision and glasses could correct it?

I know. I sound too excited. The Prof said it was unlikely that it would make a difference to May due to her brain injury, but in a child suffering solely from the astigmatism, it definitely would. The correction needed is significant. He thought it wouldn’t hurt to give it a try.

So, following the appointment, I chose an adorable pair of spectacles for my May. Said spectacles will make their world debut on this blog in about a week’s time!

Want to read more from Stacie? Check out her posts on BabyCenter’s Momformation!

Read Full Post »

Trouble in Physioland

Parents of special needs children: Do you feel too encouraged? Do your toddler’s exercises look remarkably similar to the ones you learned when she was three weeks old? Do you appreciate reams of paperwork and target setting?

Well then, please join us! Welcome to the World of the So-Called Experts!

Today, I met with May’s physiotherapist after weeks of worries weighing on my mind. Here were my concerns:

1. May’s exercises have remained virtually unchanged since birth.
2. Her physio doesn’t do any physio sessions, or hands on work herself. She instructs me and the nursery and we do it. I don’t mind this in theory – but the result has been that she never touches May ever.
3. I have no sense as to whether May is progressing well considering her injury, or poorly. No sense. At all.

Last week, when I posed my concerns to her (with a lot less detail and quite a lot less negativity), she proposed that we discuss it on a day when May attends nursery so there would be fewer distractions.

I can’t be the only person who thinks that it is irresponsible to formulate a new plan of therapy for May without her present. Not to mention that it just sounded like another excuse not touch May. I replied expressing this concern and we arranged a time when May could attend.

I should have left her at nursery. Much like every other meeting we’ve had, she shied away from touching May. I had to ask her, about 40 minutes in, to feel the tone in May’s legs and shoulders. As she felt May’s shoulders, she said, “You know? You’re right. She is quite stiff here.”

May’s shoulders have been the area with the highest tone since she was born. How is it that she didn’t know this?

But, the worst moment for me came when she took out a targeting sheet. Under a section labelled “Two Years Old” there were five categories, each progressively worse than the next. Without any warning, she pointed to the worst of the categories and said that’s what she would label May. “But,” she added, “on some days, she seems better in some areas than this.”

Thanks. I feel a world better now.

“Why are you showing this to me?” I asked.

“As a way of explaining how I set my targets for May. You don’t have to use it yourself. I use it to see where we go from here.” As if that is an excuse. First of all, five sentences is not enough to articulate properly the level of my daughter’s physical abilities. Secondly, how can five sentences guide anyone in determining “where we go from here”?

What of actually touching the child, stretching her, standing her up to see how she is progressing physically? When does that happen? (Apparently, at the end of September, as she showed me on her pre-prepared planning chart five minutes later.)

I handed back her useless, target sheet. “Well, it may be useful for you,” I said grimly, “but for me, it is just depressing. So, I wouldn’t use it.”

I’m actually angry at myself. How is it that I let this woman determine May’s physiotherapy for so long?

So, here is my physio plan for May:

1. Hire someone privately for May to see her on a weekly basis. Someone who will remember what her tone is and apply herself to finding effective ways to improving it.

2. Allow the current physio to stay on (although I have already shifted her administrative duties on to someone else – originally because I thought she just needed more time to focus on May’s physio needs) in order to fit May for a new lycra suit and standing frame.

3. All the above, until May starts at a special school, probably in January, where her physio needs will be transferred to someone new, at the school.

Want to read more from Stacie? Check out her posts on BabyCenter’s Momformation!

Read Full Post »

Why do so few people care about May’s visual development?

If I can't see it, I'll eat it!

I will remind everyone reading this that I’m not a doctor since I’m about to explain how vision develops in a baby. (Feel free to correct me.)

There are two aspects of vision: mechanical and cognitive. Mechanical is how the eye moves, focuses on things, etc. Cognitive is how the brain reads, identifies and remembers what you see.

The two are very different and yet they work in conjunction with one another. So, when May went to her first eye appointment (lots of fun, you can read here), the mechanics of her eye were fine, but the nerves that grow at the back of the eye and link the eye to the brain were not developing.

Why not? Because the brain received information from May’s eyes, but the parts that could read that information were, shall we say, unavailable. Children are not born with 20/20 vision. The develop their vision for the first five years of life, so if May’s brain can’t read what she sees, her vision as a whole is effected.

To go a step further, even though the mechanics of May’s eyes worked initially, in order to progress they needed her brain to be registering what they were seeing.

Does that make sense?

I condensed over a year of my own research into four short paragraphs so feel free to be confused. For further reading, I would suggest Cortical Visual Impairment by Christine Roman-Lantzy.

Indulge me for a moment.

This was the single most challenging issue to find any information about. It took me over a year just to find it. I asked every doctor I saw. Every single one, even the ones I respect the most, told me there was nothing I could do. Worse, they had no information to pass on to me. That is how little is known about visual development in babies, let alone brain damaged ones. Furthermore, later I discovered that some of the doctors knew about the Great Ormond Street Hospital Developmental Vision Clinic and didn’t suggest it to me. Once I found it, on my own, they were reluctant to refer me to it.

Why is this?

In every physical way, May has therapy. In every cognitive way, May has none.

Why is this?

I must not be the only parent who is desperate for information to help their brain damaged child develop cognitively. I don’t need to say how important vision is to development.

You can click on the Visual Development link in my right side bar to read about some of the things I’ve been doing with May to improve her vision. And, it is improving – just slowly.

Next month, May goes to the famous Moorfields Eye Hospital to have her vision evaluated (mechanically and cognitively) on the suggestion of the head of the Developmental Vision Clinic at Great Ormond Street Hospital. It would have happened earlier except I had a little issue getting there during the past month. That little issue being a new little baby.

Read Full Post »

Help! What do you know about physio?

May has a physiotherapist. She is a member of May’s community team, so we don’t pay any additional money for her and she works alongside everyone else who works with May. She is professional and organized and I should feel like she is enough, but I don’t.

She isn’t just May’s physio. She is also May’s key worker, meaning she organizes new equipment or referrals if we need them. If I have a problem with funding or with a member of the team, she takes care of it.

But, she isn’t just May’s key worker. She is also the person at the center who measures and orders the lycra suits for all the children who need them, including May.

That’s a lot of stuff. And, I worry that in between all that, the physio itself gets a raw deal. She sees May with some frequency, say once every three weeks, but during this meeting often it is the administrative end of May’s care that is the priority.

May does the same daily stretches she did when she was a baby. That’s not necessarily the wrong thing since the stretches are about keeping May’s full range of movement as she doesn’t move very much or in the manner a two-year old should.

Are they helping? I don’t know. I know that May has a good range of movement for a child such as herself. So, yes, I suppose they are.

Is she progressing? Not sure. Her progress is very slow. I don’t like creating lists of what May can’t do, however there are some things I thought physio could have achieved. For example, May still pulls her arms in towards her chest or hyper-extends them. She delivers few relaxed, deliberate arm movements. Yet, she does thrust her arms forward to hit a toy. This implies to me that she does understand that her arms can be used to manipulate an object, even if her movement is clumsy.

Shouldn’t physio play a role in improving this?

It is disheartening to do the same stretches, songs and activities over and over again for two years in the hopes of stimulating independent movement and not help May achieve it.

On the other hand, maybe the progress  and range of movement May has is really amazing for her skill set. Maybe I should be thinking about further progress along the lines of what she is realistically capable of.

I don’t believe in the “It can’t hurt” philosophy. If it doesn’t work, we waste money, but the time with May is even more precious. If it is unproductive, if we could have enjoyed that time together and instead I forced her to do all kinds of nonsense, it will hurt.

My question for you readers in the know:

Should I invest in additional physio for May? And, if so, what kind?

Read Full Post »

Insensitive. Irresponsible. Midwife grrrrr.

Yesterday, I attended a cesarean clinic at my hospital’s birth center. During the clinic, a midwife prepared me in the same way as for a normal operation: pre-op instructions, blood samples, necessary prescriptions…

I thought it would be reassuring. The midwife would explain the before, during and after op, and I would ask all my serious and silly questions. When I saw my consultant on Thursday, he said not to worry, whatever I wanted, she would write it down and it would be done on the day. No problem.

Except, for the midwife, there was a problem. Several. There was a problem with the timing of the meeting; she kept looking at her watch. There was a problem with all my requests; like getting skin to skin contact since they need to wipe and warm the baby first. But, most importantly, there was a big issue with my requests about post-birth care of my baby.

“Because of my previous birth history, I wondered when the baby would be checked out by a pediatrician?” I asked.

“Oh, usually they examine the babies 24-hours after the birth. But, it’s not a problem, one of the midwives will do an initial check.”

My insides twisted up inside of me when I heard that. “Is there any way we could get someone in sooner,” I asked.

“I doubt it. The doctors really don’t like coming down earlier than they need to if the baby presents okay.”

She already asked a detailed round of questions regarding May’s birth, so she knew the circumstances. Yet, while we spoke, she jotted down notes in my file – mundane things like, “swab provided” – while simultaneously speaking from script. There was nothing ordinary about May’s birth, but she gave me the brush off in the manner people do when they think they’ve heard it all before.

Therefore, when she said, “The doctors don’t really like coming down…” I fell into a kind of emotional coma. Inside, I screamed, “They can’t come down one flight of stairs and check on a baby that might die? What? What?”

But, on the outside, I exhibited no signs of life. Instead, I calmly said, “Issues with my daughter weren’t discovered for 12-hours. I don’t want that to happen again.”

Very casually, like we were discussing food on the ward, she asked, “And, what kind of signs were those?”

I collapsed inside as I delivered a list of a series of symptoms that anyone, medically trained or not, would know could kill a newborn: “She wasn’t breathing. She had major seizures. She wouldn’t feed. She didn’t cry.”

She is unfazed. “Well, if that happened, I can assure you a doctor would come down immediately. And, there will always be midwives on hand to check her.”

“No offense, but there were midwives on hand to check May as well, and when I thought she wasn’t breathing, my midwife didn’t even pick her up to check her vitals. I’d really feel more comfortable if a pediatrician could check the baby over as soon as possible.”

The midwife looked at her watch again and said, “I would like to say I could guarantee that, but I can’t. So, why don’t you ask the team on the day and they will see what they can do. And, if that is all…”

I was encouraged to leave. And, I’m ashamed to say, I did. I left. I found myself smiling at her and walking, of my own accord, out of the office, down the hall, into the elevator and out the hospital doors.

For the next three hours, I didn’t do anything. I didn’t listen to any music on the drive home. I didn’t eat any lunch when I got there. I sat at my kitchen table and I stared into space and thought, “No one is going to watch out for my baby. My baby is going to stop breathing and I will be too tired and drugged out to realize.”

Finally, my husband phoned to see how it all went. As soon as I heard his voice, I sobbed. I told him what happened. He was furious. “What is wrong with these people? Don’t they know that May almost died?”

“I tried to explain,” I said, feebly.

He calmed his voice. “I know you did, honey. Who did you talk to? I’m calling the hospital. I’m calling them right now.”

Ten minutes later he phoned me back. “Don’t worry. I spoke to one of the obstetricians. He is putting in the request now, a pediatrician will examine the baby. There was no question. He didn’t argue with me. He was in total agreement.”

He gave me the number of the doctor, who I called. By the time I got a hold of him, the request had already been made and filed. “Don’t worry,” he said. “You are completely right to worry. There will be no problem having a pediatrician look at your baby. It is totally justifiable.”

I felt so much better. But, so much better is still not the carefree mother-to-be I was when I entered the hospital yesterday. The midwife – that insensitive and irresponsible woman – reminded me all too clearly that the care you get greatly depends on who you get on the day. Fingers crossed it isn’t her.

Read Full Post »

Update on May’s vision

A year ago, I took May to see a ophthamologist at the hospital to check the mechanics of her eyes. We’d already established that May’s vision was weak, but in what way? To what extent? And, what could we do to help?

I struggled to get anyone to help her. I’ve found the medical community is very helpful with May’s physical problems, but anything cognitive or that goes beyond the physicality, they say will just happen as it happens. In these cases, they often say there is nothing to be done.

That kind of attitude is beyond frustrating – it is unprofessional. What they really mean is that there is very little known about brain-damage in babies. That is a very different thing than that there is nothing to be done.

But, they should try! Their guess is better than my total lack of knowledge. I spent many days despairing that no one would help May during the most formative and first year of her life.

May’s appointment with that ophthalmologist was one of the worst I experienced. He acted as if I’d interrupted some genuinely important business, and then basically told me that May was blind and that there was nothing we could do about it.

This week, when I took May in to the Developmental Vision Clinic at Great Ormond Street Hospital (a clinic that took me a year to find), they wanted to refer her back for a follow-up. They saw that I wore glasses and felt we should recheck May’s eyes now that she is older.

I may have physically winced at this suggestion. I hate saying to anyone that I don’t want to do something that might help May. In the end, I swallowed my pride and told them I found the initial appointment traumatic.

Thankfully, they were very understanding. Instead, they are referring her on to Moorfields Eye Hospital where the head of the Developmental Vision Clinic said she will see May personally, along with an ophthalmologist to check the mechanics her eyes.

Their assessment of May lasted over an hour. During this time, May charmed them with her amazing skills in giggling and bouncing.

Their assessment of May was positive. I say, positive, but I suppose what I really should say is realistic. May had made progress, though we agreed that it was slow. Still, they all said that, considering the extent of her injury, it was significant that progress was being made at all.

Unfortunately, they didn’t really have anything new to advise me to do with her. I’m to continue to touch her hand to objects I want her to see, show her familiar objects and say clearly what they are, and look out for what stimulates her visually and present those objects to her in new ways.

Like always, I wish I walked in and they handed me a solution to all May’s visual woes. However, I’ll settle for a thoughtful dialogue and thorough assessment. It is always more welcome than a painful brush off.

You can now follow Mama Lewis on BabyCenter, where I will be writing about my pregnancy, or Twitter!

Read Full Post »

The Story of the Delivery

You’ll excuse me if the following sounds a bit clinical, but it has taken me almost two years to put May’s delivery into writing. I find it easier to deal with if I am straightforward, so I’ve left out a lot of my own personal thoughts or fears at the time.

I don’t write it for sympathy. I don’t need comforting. I write it because it has been two years and it is time to move on.

WARNING TO PREGNANT LADIES: Do you really want to read this? It doesn’t end well.

When I was pregnant with May, there was no sign that anything was amiss. Nothing. In fact, I felt exactly the same in that pregnancy as this one. That is either very worrying or reassuring, depending on how I wake up on any given day.

So, when my waters broke, no one fussed. The midwife visited me at home to test my waters for infection and told me I could labor there for up to five days if I wanted. (I didn’t. FIVE DAYS!)

The following day, I received a call from a different midwife who told me my waters had tested positive for Strep-B. This is an infection that can kill babies, so I urgently needed to come to the hospital. The process of all this happening, from waters breaking to booking in, was 36-hours.

Once there, it was another five hours before a drip with Penicillin was administered to fight the infection. Still, I had no contractions, so they decided to induce.

A drip of Pitocin was administered and I went from no contractions to full, constant torture in under ten minutes. From then on, I had an epidural.

I pushed for a long time before a doctor checked and discovered that I wasn’t fully dialated. This was the first time, since I arrived in the hospital, that I saw a doctor. By this point, we were already over 60-hours since my waters broke.

The doctor asked me to make a choice: continue to push (as the baby didn’t show signs of distress) or move to the operating room for further assistance. At this point, I hadn’t eaten or slept in days. My body shook with exhaustion, but also a reaction to the epidural. I thought I was going into shock.

Once in the operating room, May was delivered fairly swiftly. But, her arrival only came after a failed suction, and successful forceps delivery. She had a gash on her head from the failed suction for days afterwards. Really, you would have thought she’d been in a car wreck not a delivery.

May after delivery

That is the reason why I didn’t question her not wanting to feed, or shaking, or any other signs that I now know were signs of distress.

May was rushed to the Special Care Baby Unit the following morning after a midwife recognized she was seizing. She stayed there for almost six-weeks.

But, what exactly caused the brain-damage? We may never know for certain. A lot of people have theories. A midwife for my current pregnancy, told me that Strep-B needs to be treated with Penecillin within 18-hours of the waters breaking to be effective. Strep-B is known to cause brain-damage. The obstetrician assigned to my current pregnancy believes it was the combination of a protracted labor with the Strep-B. My mother thinks it was socialized medicine.

I’ve always thought it was a combination of a lot of small things that isolated would have caused no harm, but together damaged May irrevocably.

We don’t know what the future holds for May. We aren’t deluding ourselves, which I’m thankful for; she is severely brain-damaged. Our goals for her have much more to do with independence (feeding herself, using a toilet) than they do with attending a university.

We haven’t sued anyone. We looked into it, but it is a very difficult case to prove. So far, it doesn’t look like we have one. But, that might change.

Here is what we focus on: our love for May, the joy she gives us and the security we can give her.

Read Full Post »

Health and Money (and a baby with a fever)

This week has been a tough one for May. In some ways, it was a very normal week in terms of illness and a baby. Sleepless nights. Struggling to get food and drink down her. Lots of tears (from her, but I felt like it at times).

May received her MMR and flu vaccine last Friday. Her fevers started on Saturday. Her seizures on Tuesday. Her first full meal again on Friday.

She’s lost a lot of weight, which is worrying. More worrying, her seizures reappeared, mainly disturbing her sleep – four so far tonight. Fingers crossed, once she puts a bit of weight back on, they will go.

Illness, even one as minor as this, is always a reminder of how close we came to losing May to begin with and how tenuous our hold on her health is today.

But, one thing we do not worry about is how much it all costs. Before May’s birth, I sometimes entertained thoughts of moving back, not permanently, but for a year or two so that I could reconnect with family and show May what being American is all about.

That fantasy, like many others I had before I knew her, vanished after her birth. But, in this case, it vanished because I knew the reality of living with a severely disabled child in America would bankrupt us.

Firstly, May has a pre-existing condition. We could get insurance, but the premiums would be astronomical. If they weren’t, I imagine the deductibles would be.

Instead, I live in the UK where I pay £121/month (about $190) towards National Insurance and nothing else. When I lived and worked in America, over ten years ago, I paid over $200/month, plus, a deductible whenever I visited the doctor or had an x-ray or anything, really.

We never worried about the cost of May’s injuries. Furthermore, we were saved the additional misery of begging an insurance company to cover tests they didn’t want to.

I was reminded of this when I read the article ‘The High Cost of Healthy Babies‘on BabyCenter this week.

So, what would May’s first six-weeks of life have cost?*

($3,500 x 40 days) 24-hour Neonatal Intensive Care Ward

($2,625 x 2) Brain MRIs

($1,100 x 5) Brain CT scans

($1,100 x 2) lumbar punctures to draw up cerebral spinal fluid

$152,950 in total (about £91,770)

I assume here that cost of a 24-hour stay in the Neonatal Intensive Care Unit would include medicines, blood tests, oxygen, food, diapers, heart monitoring, neurologist’s assessment… of these and many other things, May received many times over.

I think there will be some, particularly some Americans, who may read this post and think, “Ah, yes, but if May had been born in an American hospital, she would have been born healthy and, therefore, never would have racked up such bills.”

I could point to statistics that show America’s health care system is worse than Britain’s. But, the truth is, I think if May had been born in any other hospital, or by any other team of midwives, or on any other day, she would have been fine.

I think that is a “what-if” conversation for another blog. For now, I’ll just take comfort that I live in a country where May does, at least for now, receive all the treatment and care she requires, and these treatments do not break her family financially.

*Costs taken from  www.comparemricost.com and American Medical Association.

Read Full Post »