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Vera 5 years old

In all of 2017, my parents have not written anything about me here, so I guess I will have to do it myself.

Helloooo, everyone! You guys are probably wondering how I am doing. I am five years old now and things are going very well. For those I haven’t seen or talked to in a while, I’ve really said goodbye to my baby and toddler years. I am a Kindergartener now. I’ve really grown! In many ways. I am taller now. Every evening I get a shot in my bum, luckily I’m quite used to it now. The shot helps me grow, not quite as much as we’d hoped, but it’s something.

I can communicate much better now. I’m using more words and I am stringing them together as well. Here and there I supplement with sign language. Or a joke or a sound. More and more people notice that I certainly understand what they are saying and that I can say something back (when I feel like it).

I’m playing. I still really enjoy watching my iPad (especially when I am tired). But I feel like playing more and more. My parents are surprised sometimes when I’m having a conversation with Monkey or Purk in the hallway, when I open and close doors, wave goodbye and pretend I’m leaving while wearing a hat. Maybe they expected it sooner or maybe later, but I just grab my moments here and there. I am not quite walking by myself yet, but I move in a way and at a pace that works for me. I crawl on my knees, walk with my walker, hold on to furniture or walk behind a chair. Sometimes when I’m wearing my shoes and hold a hula-hoop around me for balance, I can walk a few steps by myself.

Now that the weather is getting nicer, I also like to play outside. I like to go up and down small inclines with my scoot bike or walker, draw with chalk on the sidewalk or swing on the swing set.

And then sometimes I am just done and I get tired or sad. And then I want mom and dad to hold me on their shoulder or dance with me. And (as some of my Facebook followers already know ;-)), when I feel better I like to “hettebennen” (head banging to some rock music).

I think I like to play more because I am slightly less tired. My heart still takes a lot of energy out of me, but I am sleeping slightly better lately. Mom says I shouldn’t write this because I am still taking sleep medication and I still wake up a couple of times a night, but I think it’s going better. They’re saying I still need to go have a talk with people at a special sleeping hospital, but they have to think about who is going to pay for that for a while, or something about a waiting list… Which is too bad, because on nights when I do not sleep well, I really do not have a lot of energy and I get upset more easily and I have headaches more often. Mom and dad drink some extra coffee on those occasions, but I can’t have coffee yet. So after I’m done with school (I stay until 1:30 PM) I feel like my day is done already. It still varies a bit. Just like eating.

I still get all of my food through my mic-key button, the tube that goes into my stomach. I happily join in during meal times, if I might say so myself. I look at what everyone is eating and I make sure they put their food in their mouths. Or help them a little. I’m also fairly interested in what’s on my plate. I play around with it and sometimes I take a few bites. At school, there is a group called the EAT-team and they have started to think about how I could start eating for real. I understand there may still be a long road ahead, but I’m open to it. And my parents too, luckily. This way we can keep meal times pleasant at home and at school I get an extra elective called “Learning how to eat”. Who knows what will happen.

I still visit the hospital often. Luckily not for emergencies anymore, it’s always with a letter from a doctor who wants to see me, check up on me, take images, give me medicine or take some blood. In all of 2016, I have been to the hospital 51 times, so I know lots of doctors and nurses well and they always wave at me. When the doctor’s appointment is done, I always get a cookie and then I know we can go home again. Because I like being home the most.

But enough about me. Something big and exciting is coming: we will be moving to a different house this summer! And everything has been taken care of. From this new house, we can still walk to the library, the ice cream store, our bakery and the coffee shop. Because I have to think about my social life, you know. I will get a new bedroom where my bed will be. And there no longer will be a big step up to the front door, so I can go in and out easily with my walker or wheelchair. And inside, there is a lot more room! The wheelchair can be parked in the entrance instead of in the living room and I can use my walker around the house without bumping into everything. The bathroom is more spacious also, which makes it easier for mom and dad to help me. They are going to make a changing station downstairs, so I don’t have to go upstairs for every diaper change and we can store my diaper supply, boxes with syringes and bottles of medication there as well, so it no longer has to be in my bedroom, which gives me more room for my stuffed animals, nail polish, and books. I’m excited!

Time to go, until next time!

Greetings from Vera.

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Update, Christmas wishes and thanking sponsors!

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Dear people,

A short look back on 2016 for Vera and us as a family:

Saying goodbye to the Sophia Rehabilitation preschool: After more than one and a half years, it was time to move on from the therapeutic preschool. We look back with thankfulness for the wonderful support, time, love, attention and endless patience from the employees of Sophia Rehabilitation in Gouda.

Vera had her 4th birthday! (this blog post) For preschoolers, this is like growing up: doing more things yourself and moving on to… elementary school. It was also confrontational for us, because Vera can’t do a lot of things by herself yet. But off she went to elementary school!

Mytylschool de Brug (The Bridge, school for children with special needs): after consulting with Sophia Rehabilitation, we applied for this special education school in Rotterdam. It is a big school and Vera has to travel a bit to get there, but now that she has been there for a while, we do not regret it. Vera is really going to school now: she gets assignments, sits in circle time, learns numbers and colors and interacts with classmates. At school she gets support from the neighboring Rijndam Rehabilitation center. We are glad that Vera feels at home at this school, we get the sense she really gets the time and space and stimulation she needs to grow and learn. She doesn’t have the energy for full days yet, she currently goes to school for 4 half days a week. She gets picked up in the morning at 7:30 by special taxi and around 1:30 PM, one of us picks her up from school. At the Rijndam Rehabilitation center, lots of capable therapists are working with Vera on developmental goals that we have determined together.

Medical: 2016 was also the year of the Chiari Malformation operation, a procedure to create more space in Vera’s skull for the cerebellum that had slipped down. Everything went well and we have noticed an increase in Vera’s mobility since then. Unfortunately, we found out during her last MRI that the cyst in her spinal cord has not disappeared yet.
We started growth hormone treatment over the summer. You can read more about this in this blog post.
In the fall, we had an ENT-procedure on the calendar: Vera’s tonsils and adenoids were removed and she received new ear tubes. Before the procedure, Vera had been snoring loudly and had developed sleep apnea. This has improved tremendously since then. Unfortunately, she is still not a great sleeper and still needs sleep medication to sleep. Even with sleep medication she does not sleep through the night.
Lots of medical concerns and problems still remain. Her tachycardia is difficult to treat, different treatment options have been explored this year, but to no avail. Additionally, the way her feet and hips are formed and positioned are still cause for concern.
But Vera has grown also. In the literal sense slightly but definitely in her development. She is speaking better and better, is able to play independently better and she is better able to fight off colds and viruses on her own. Hospital visits are still frequent, but they are all planned visits now.

Wheelchair: Because Vera is such a big girl now, she was ready to say goodbye to the stroller. She has had her manually operated wheelchair for a couple of weeks now and is quite capable with it. And she uses her walker at home as well.

Moving: Because of the wheelchair, we have started looking for a different house. It would be nice if Vera had a bedroom and bathroom on the main floor so we don’t have to carry her up the stairs several times a day (for changing, sleeping, bathroom use) and she can retreat to her room independently. We currently also have a big step up to the front door, which requires us to lift the wheelchair out of the house daily. If anyone knows of a great place in Gouda that would make all of this possible, please let us know. Preferably within walking distance of the city center, so Vera can use her wheelchair to get around easily.

It was a difficult year for the international Costello group. Several people with the syndrome passed away and even though they lived far away, the loss feels very close to home…

Mieke had her 9th birthday, the final year before we have a tween in the house. She is enjoying school and her local scouting group. She has joined a musical performance class this school year, she loves to sing and dance. Next year, Mieke will join a so called “bristers” (brothers and sisters) group at Vera’s school. The group is intended for siblings of children with a handicap to connect and share experiences.

Mieke and Vera get along really well together (other than the occasional sibling quarrel). Even when Vera behaves in a challenging way, Mieke is an incredibly sweet sister to her.

Finances: Thank you so much to all the people who send us donations on a regular or one time basis. This year we have used your donations for:

  • Fuel cost to/from school in Rotterdam and the hospital in Utrecht, as well as lots of parking at the hospital
  • Copayment for daily special taxi service from home to school
  • Meds that are not covered by insurance such as sleep medication, nasal sprays etc.
  • Membership for the play library that has special toys (Vera has hyper flexible fingers which makes it hard to manipulate regular toys)
  • Cooler for medication and food
  • Lots of baby wipes (luckily, diapers are now covered)
  • Copayment for custom shoes
  • Custom equipment to help with learning to eat & extra large bibs
  • Faucet adapters that allow Vera to reach the water stream to wash her hands on her own
  • Some healthy food, because we still make all Vera’s tube feedings ourselves
  • And lots more…

When the sponsor added a special note to use some of it for something special for Mieke or for family outings, we have done so.

Again, thank you so much. A handicapped and medically complex child brings along extra cost and less income because one of us had to give up their job. It is wonderful to feel supported in this by the people around us. We also wanted to mention: if you support us on a regular basis, please do not feel obligated to keep doing this. We have noticed that when one sponsor stops, another one will pick this up. And we are managing well. We may request additional support in the future when we will have to navigate a move and possible renovation.

For now, we send our warmest regards to everyone, wishing you a Merry Christmas and a beautiful new year filled with love.
“And now these three remain: faith, hope and love. But the greatest of these is love.” (1 Corinthians 13:13)

Bye!

Niels, Leonie, Mieke and Vera

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Four years old

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Hello, this is Vera.

trotse 4-jarige op laatste dag TPG Sophia in Gouda

proud 4 years old on her last day at the Sophia rehabilitation preschool in Gouda

This time I would like to do the talking. Since I am already four years old, I felt it was high time. Yes, you read that correctly, I am now FOUR years old! Mom and dad have been fussing over this operation and that’s why they haven’t written about my birthday. They talk about doctors way too much anyways, I can talk about so many more things besides those people in their white coats. But all right, just so I won’t ignore mom and dad completely, I can tell you that the operation worked out really well. On the day after my birthday I had to wake up ridiculously early to go to the hospital, but I was completely ready to go. Just when I was about to put on my flattering operation gown, mom and dad made sour faces because a nervous man was telling them that the surgeon was ill.
Well, I can understand things like that, better next time. And that next time was exactly one week later. Okay, it was no picnic. I laid on the operating table for 3.5 hours and afterwards I felt like someone had been seriously messing with my skull and brain. Turns out the doctor said that he indeed had done just that (no way!) and that everything had gone according to plan. This time I didn’t need a tube in my throat after the operation, I could breathe just fine on my own, thank you very much. And therefore I didn’t need to go to intensive care, which made mom and dad very happy. But I must say, they were very busy with me. I was in pain, didn’t feel very good and felt nauseated. I made sure to let everybody know. I was given morphine through an IV and some other medication which made me feel kind of funny. But I quickly realized that laying still and sleeping a lot would be best. After that, I did my very best to recover and that worked out pretty well. I am a fighter! And so, on the third day after the operation, against all expectations, I was allowed to go home! I wasn’t very talkative yet, but in the hospital they were doing everything my mom and dad could do at home as well (that’s the cool thing about my parents) and at home I could lay against my sister on the couch. Much better.

Since then I have been getting lots and lots of compliments. Sometimes I think I should have had this operation sooner. Because you know, before the operation I didn’t really like to move my body as much. Laying or sitting down felt much better. Standing and walking wasn’t really my thing anymore. But now everybody keeps telling me what a good job I am doing walking with my walker, along the table and climbing some steps on the stairs. I tricked my mom recently. She had put me on the couch and went to the kitchen to cook. I climbed off the couch by myself, grabbed a little chair and used it to walk over to the kitchen. You should have seen my mom’s face when I showed up right next to her, ha ha! In short, the doctor wants me to visit to have a chat and check on me, but I can already tell you: the operation was a success.

Mom and dad still frown when they see the positioning of my feet, I don’t seem to be standing particularly straight or stable. But, hey, one thing at a time. They’re probably going to drag me to the doctor for that as well. They are already talking about an image of my lower back and something about Achilles tendons that are too short and casts for my feet. We’ll see what happens, for now just let me do what I can. I am not crying as loudly at night and my legs hurt less than before, it feels much better now.

But, like I said, I have much more to tell you: That I left the Sophia rehabilitation preschool for instance. I have had a wonderful time there with the sweetest teachers I could imagine. But I think I outgrew the place and I wanted to broaden my horizon. When you do something, you gotta do it right, so instead of a preschool I chose a school in Rotterdam (my dad is pretty happy about the Rotterdam choice, because he works there and feels very at home in that city). The school is called mythylschool De Brug (school for children with special needs The Bridge) I am in Ms. Corrie and Ms. Mieke’s class, which is quite funny because I also have an aunt named Corrie and a sister named Mieke! But to be clear: they don’t look anything alike. There are 7 other children in my class, we’re all buddies because some of them are in wheelchairs, are taking their time to learn to speak or need time to learn something. I feel right at home. And I act like I’ve been going there for months. That’s what the teachers also say about me. In reality I have slowly been adjusting to school after the operation and for now, I go 4 mornings per week and we’ll probably keep it this way for a while. Those four mornings are pretty intense! My energy levels are not top level and sometimes even I forget that my heart acts out throughout the day, sometimes it beats super fast and then it beats normally again. At my new school, we do really fun activities: we sit in circle time, hang up pictures of the things we will do that day, we go to the play room, read books, we go swimming (yes, for real: a swimming pool at school!) and we enjoy listening to music. I have a slight suspicion that I’ll have to do several types of therapy work soon, but for now I think this is already quite enough.

And there is something else I want to tell you: Mom took me to school the first couple of times, but now Janna takes me there. Janna is a cheerful early bird with a huge white van, which she parks in the middle of the street, no problem. I go and sit in my stroller like a queen, then get into the van with a lift and wave goodbye to mom and dad: Bye!! Inside the bus it’s really fun, because lots of other friends from school ride along also. I must say that I am starting to get a bit jealous when I see kids on the bus and at school in wheelchairs. I mean, I am FOUR years old and they still put me in a stroller, that’s why some people still call me a baby. Come on! I think it’s about time I switched out my ride, so my new occupational therapist and I are looking to see whether we can find a mini wheelchair for me. Mom does still pick me up every day, when I go home at lunch time. I’m so happy I get to travel home with my mom. I really like to talk about my day and about who is going to be where and who will be with me. It makes me feel better when I know what to expect.

Well, by now you’ll understand that we’ve had some busy weeks in which a lot has happened. At night, I like to process everything. Unfortunately, this makes mom and dad look a bit tired during the day. I get to see them about five times a night when they comfort me or take me in their laps. Oh well, it will all work out. In the mean time I’ve decided to celebrate all of this by eating ice cream and chips again and by practicing my swallowing skills. And that is so much fun, especially with my big sister Mieke. I say: Bring on the warm spring days! I scream, you scream, we all scream for ice cream!
Lots of love and talk to you later, Vera.