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)
Niels, Leonie, Mieke and Vera