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From tube feedings to tacos

Eight years ago, now. I still remember how surprised I was that my baby couldn’t eat. And how sad I was about that. Food is so much more than sustenance – food is also: togetherness, sharing, smelling, tasting, enjoying, discovering, quenching hunger, growing, celebrating…

A couple of hours after Vera’s birth, a feeding tube was put in from her nose to her stomach. After a couple of months, that feeding tube was replaced by a port in her belly that connects to her stomach. These feeding tubes were her lifeline because, like most children with Costello Syndrome, Vera wouldn’t eat. She tried, but her fine motor skills and sensory issues got in the way. Her cell signals are different and do not send a message to the brain that food is needed to survive. Tube feeding was the only way for years.

We have gone through quite a journey in this with Vera. For those who know us or have been reading along with us, you may remember we went from pumped breast milk through the feeding tube to special tube feeding formula that caused vomiting and diarrhea, to discovering the blended diet: simply putting our daily meals in the blender and using syringes to feed Vera. This brought an enormous improvement in Vera’s quality of life. She received real food through the feeding tube, precisely the same healthy food we were eating. Seriously, when I start talking about the blended diet, I sound like a total spokesperson. And in the meantime an entire team of therapists worked alongside: pre-speech and speech therapy (yes, speech therapists do not only help with speaking but also with learning to eat: the movement of mouth and tongue are crucial in learning how to eat), there were play sessions with food and Vera did all sorts of exercises to learn to deal with different textures.

When you have a child with disabilities, you quickly discover how complex seemingly simple and mundane everyday tasks can be. Learning to eat proved to be this complex system of feeling hunger, smelling food, tasting food, feeling brave enough to touch food, being able to endure the textures of food in your mouth, making the right movement with your tongue, chewing and swallowing and all of this without gagging or choking. And then to keep eating and not be done after just a couple of bites. Vera has also had feeding therapy at school. She would go to a special room and practiced eating one bite of a sandwich and then would return back to class. As parents, we also received great support from the EAT-team at Rijndam rehabilitation.

bij David’s Gelato

There were lots of fun moments: we may have gone to the gelato place in town way too often over the course of a couple of summers because ice cream was just about the only thing Vera enjoyed eating. There were some tricky moments: Vera could eat an entire piece of cake with whip cream at a birthday party, but when we tried handing her a boiled egg at home, she would gag. When she really wanted to join us in eating our dinners together, but simply couldn’t and would get frustrated. It was a long and slow process with some steps forward, but then with illness, a big slide backwards again.

But we were making progress. At a certain point, she got enough food in her so she no longer needed a tube feeding at school. In the mornings and evenings, she would still receive healthy homemade tube feedings with lots of vitamins to round out her caloric intake.

And then came the big stay at home period due to COVID-19. After some initial confusion, Vera seemed to be doing well with staying at home so much. Everything was very predictable, the family was always complete and Vera had more energy. To our big surprise, she used this energy to focus on eating. Eating more, eating new things and crucially, eating a big enough dinner. There were days with some trepidation that we could skip the evening tube feeding because she really did eat a decent amount of food. Days where we could skip the morning tube feeding because she ate enough breakfast. And suddenly we realized she hadn’t had a tube feeding in 5 days. All of a sudden, a week in which we didn’t use the blender to make tube feedings. And 5 days turned into 5 weeks without feeding Vera through her Mickey-button in her stomach. What a milestone! Even some of her medication Vera now swallows on her own. Some other meds are still too difficult (a pill that is too large and liquid heart medication that is critical and has to be an exact dosage).

There are still some bumps in the road here and there. But currently, we no longer regard Vera as a tube fed child, but as a difficult eater. Like with many children: fruits and vegetables are the hardest and we use tricks like hiding them in soup or muffins or with some whip cream on a banana. But that is okay, it is a new phase. Vera still has to gain lots of experience in eating normally. But it is good enough. And good enough is fantastic.

For now, the mickey-button in her stomach stays where it is. We like to see how things will progress for a couple of months. To really see and experience that this is the new normal. And we will also have to see how things will go when she is tired, ill or tense. Whether things will continue to go well, and we can really start living without tube feedings. Vera has had the mickey-button for eight years now. It’s a part of her and we don’t need to get rid of it just yet. Vera also perceives it as a necessary part of her body even though she has now asked us a couple of times whether it can come out. Regardless: I think it’s time for a return trip to our local gelato place or for cake because we definitely have something to celebrate!

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Merry Christmas and good night

December, a month of looking back at the year in review, counting challenges and fortunate breaks we had. We have a lot to tell you about 2019. But by far, the number one notable thing has been: getting a good night’s sleep. Because (spoiler alert!): We are sleeping! I want to frame this phrase and hang it on our walls.

Last January, we noticed that seven years of poor sleep was starting to take its toll. And not just for us, but for Vera herself as well. She was having a hard time, crying more often and having behavioral issues. In consultation with Dr. Pillen of the Kempenhaeghe Centrum voor Slaapgeneeskunde (Center for Sleep Health), we started a medicine called Gabapentin that is usually used for epileptic seizures. Vera does not have epilepsy, but this medicine helps numb the sensory stimuli. And that was the main reason Vera was unable to have deep sleep cycles, along with some throat, nose and ear issues.

Vera was admitted to the hospital to start the medication and regulate the dosage because this medication can have an affect on heart rhythm. And Vera’s heart rhythm is being held under control by two separate heart medications. We did not want any disruption to an already hard to manage irregular heart rhythm. So we had a couple of intense nights… Would it work? Would it not interfere with her heart? We almost didn’t dare hope it would be successful. But it’s working. It’s helping I could say also. Because, as with all medication that Vera receives, with it we try to get to normal values. And now Vera’s system can finally relax at night. You can even tell her body is less restless physically in bed. And since Vera has been sleeping better, things are going better. She is eating better, there are fewer behavioral issues (even though that is still something we are working on) and we have received reports from school that she is more alert and present in class. Is everything going well all the time? No, Vera is still an early riser. And when a lot is going on in her life (such as a teacher being sick or having different drivers that take her to school and not one consistent one) we notice this in her sleep. But it certainly has not been as bad as it was before the medication. As Dr. Pillen said: “You have to see Vera’s sleep as her weak spot.” It is not atrocious anymore, we now have a basic night’s rest, but when life gets unpredictable or there is a lot of change, her sleep will not be as good. So that’s where we are at. We have been getting a normal night’s sleep for months now. It’s almost like emerging from a storm cellar after a hurricane has blown through and we are looking around us thinking: What now? Well, there is plenty to do, but now we have the energy to do it.

For instance, we have been working with the city of Gouda for an extended period of time to get reimbursed for the stairlift we had installed for Vera. It took a lot and many kind friends helped to get this finalized. And if all works out, there will be some accommodations in the shower so Vera can be more self-sufficient with our supervision. This will also really help us spare our backs and arms. Unfortunately, I hurt my back this year (hernia) and Niels has been struggling with shoulder and arm pain for months now. So, accommodations and other aids are no luxury for us.

And then, we received the news that we no longer qualified for KinderThuiszorg (at-home medical care). Vera no longer fit the profile to receive this long-term care. This was very hard for us. Now we no longer had the professional help we needed, no childcare or moments for much-needed self-care and we were on our own. It took a little while before we gathered the courage to ask for a PGB. A PGB is government funding in the Netherlands that long-term caregivers of elderly or people with long-term illness or disabilities can receive to help cover the cost of all that is involved in this care.

It took a lot of red tape and paperwork and Niels took care of most of this. Request forms, creating a budget plan, descriptions of care, care agreements, contracts, an at-home interview and an interview at the care office in Eindhoven. Altogether it was a lot. At this moment it is looking like everything will come together and we will receive PGB. This will give us many possibilities. We can hire people again to help care for Vera. And because I myself am one of Vera’s main caregivers I will receive an income. It amazes me how good that feels. That there is acknowledgment for the fact that taking care of Vera is very different from taking care of an average 7-year-old. Because no matter how well Vera does in her development, she needs assistance in almost every aspect of her life: bathing, changing diapers, getting dressed, eating, playing, moving around. And then there is all the medication, the tube feedings, hospital visits and contacting doctors and therapists. It is a job in and of itself and now that is acknowledged.

And so, we are looking back on a year in which we are finally sleeping, have been able to arrange for accommodations and we get to look forward to receiving the care funding. We are also looking back on wonderful family moments, vacations, holidays and also just the average day-to-day. Those moments you could take for granted but that are so valuable. We are thankful for each other. And we are thankful for all the people that think and care about us.

We wish you all Happy Holidays and a Happy New Year filled with love and hope!

Leonie

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How are you?

“How are you?”
I never know what to answer when people ask me this question. Not because of the person showing interest, but because of what happens in my head at that moment. I go over everything in our life, try to take an average and make up a total score. I can’t do this very fast and so I usually end up saying: “Pretty good.” Because can anyone really say life is 100% good? In our case it’s never really 100% good. In our normal, a family with a special needs child, there is always something going on. Not that that is necessarily always a bad thing. Some things you get used to, such as still changing diapers and giving tube feedings. Other things we never get used to, such as poor sleep or Vera’s temper tantrums.

portret of Vera, October 2018

Not getting enough sleep is one of the trickiest. After having visited two sleep clinics, we now have a lot of information, but no real solution yet. Vera wakes up crying and talking and tossing and turning many times during the night. And she is done sleeping very early in the morning, between 5:00 am and 5:30 am. While I write this, our pediatrician is looking into a different sleep medication and we are hoping to get some relief soon. Because we can handle everything better when we are well rested. And Vera herself feels so much better when she is rested. When she has had a reasonable night, we see a cheerful, goofy, talkative 6-year-old girl, who wants to be independent. If we have had a bad night, Vera can be quite defiant. There may be kicking, hitting, throwing things and biting and it will take a lot of coaching and guiding to get her on the school bus in a good mood. Off to school where she is now in the Blue Group. Since summer, Vera is no longer a Kindergartener, but an elementary school student. And just like at a regular school, this means sitting at desks in a row, working more independently and learning ABC’s. She is fully a part of this class. But it is still new and takes some getting used to. Some deficiencies are more noticeable now. Such as Vera’s vision. We know she has limited eyesight, but at home this doesn’t interfere with things as much. Now that Vera is in her new grade, she gets to go to recess in the big schoolyard. This means more kids, bigger bikes and carts and a larger space. If you are not that stable on your feet and you can only see things clearly that are 1 meter away, it can get a bit dicey. The teachers noticed and try to take Vera to the schoolyard when things are calmer, or have her play in a quieter corner. In the classroom she has been placed in front and when something is put up on the digital board (which still proved hard for Vera), she and the girl next to her have an iPad that shows what’s up on the board, so they can see up close.

It seems like small adjustments, but we have found that small adjustments can make a big difference. Sometimes we feel that we have made too many small adjustments in our lives and our own energy and we have to take a step back for a bit. I recently experienced this when I went to a museum with Vera and the adjustments were missing, see my Facebook post about it.

And sometimes we notice that small adjustments at home, in schedule, in approach, in tools, help Vera thrive more. That’s when she is most fun, and we are more fun and things are more fun for Mieke. And then things are pretty good 😉

It didn’t become an overview, this story. There is so much more to tell. About Mieke, who is becoming such a teen, about still diapers and tube feedings, about casts again, new splints, new shoes, new wheelchair. About Vera’s glasses that do help her see better, but will not completely correct her vision. About sensory processing and a trampoline in the living room. But for now, we’ve given you a bit of an update on how things are going over here.

Love,
Niels & Leonie