2021-2022

2021 - Deterioration

We hear from abroad that swimming with CP is one of the most effective activities. Swimming is a coordinated, asynchronous set of movements of both sides of the body. Swimming works almost all the muscles of the body and both hemispheres of the brain, so we decide to try it. For Atu, it is his first time in the pool, and being alone without his dad is scary. I miss a few lessons together. While there is not a large group of children, the coach devotes a lot of attention and time, but as the season progresses, the number of children increases, their age and swimming level also begin to differ. Atu is still a little too small and is too afraid to be alone. The coach's instructions are clear, but the child cannot handle it. These training sessions have to be stopped.

Due to the Covid situation in the world and in Lithuania, with the closure of rehabilitation centers, a large part of professional classes are no longer available. We ourselves have watched Ato's exercises a lot, but we cannot repeat them at home due to the lack of skills and tools.

Soon a gymnastic ball, a "vibration" board, massage foot balls, gel rehabilitation balls, a tactile - sensory track appear, but our lack of skills is very noticeable, and this leads to a decrease in the number and intensity of classes at home. Due to growth spurts, we begin to see a very strong influence of paralysis on Atas.

The year ends with a heavy mood. Left leg spasm, the leg is greatly enlarged. The leg turns inward, and he stands on his toes.

We continue to attend classes in Santariškės, and coordinate a trip to the sanatorium. The process is not easy, you need to get a referral, and then call the sanatoriums. The referral time is limited, so you need to do everything quickly. This time we choose the Palangos Gintaro Center. The most difficult thing for an expectant mother is to make it to all the classes on time. The sanatorium is large, we have not been there before, so it takes time to get used to the long corridors, many offices and turns. Time passes quickly and usefully, and we also learn about spinal surgery, which reduces the trap in the legs. Selective dorsal rhizotomy (SDR) - more about it in the 2022 section. Concluding the section - we recommend this sanatorium to everyone and will definitely return if we have the opportunity!

2022 - intensity and Ato strength

As the paralysis got worse, we got a good kick in the ... After the Covid situation improved, we are starting the year intensively. We are attending exercises at the Child Development Clinic (Vaiko Raidos Klinika) in Vilnius (https://www.vaikoraidoklinika.lt/). Seeing Ato's deteriorating condition, the specialists suggest trying the Adeli suit (https://en.wikipedia.org/wiki/Adeli_suit). With the help of this suit, muscle tone can be adjusted, it helps Ato with the bend of his left leg and corrects the flatness of his foot.

We are starting to attend ergo therapy with Gintarė Skučaitė - Sabaliauskienė, who has returned to the private sector from Santariškės after maternity leave. This specialist is a true professional in her field and a guardian angel for children with disabilities. Diligent, hardworking, adaptable to everyone's needs and generous with advice. Highest recommendations and see you soon.

Among all the activities, we start preparing for the SDR operation. After consulting with Prof. Saulius Ročka and Ramūnas Raugalus, we agree on a preliminary date and start the tests. Blood test and MRI. Before the MRI, you need to be fasting and not drinking, so the child is registered early in the morning, unfortunately we had to wait until the afternoon for the MRI. It is hard to wait, especially because there is no way to explain to the child why he cannot drink or eat. The first MRI had black spots, so we had to do it a second time. This time everything went better, although we had to wait, but not for long.

After collecting all the results, the date was confirmed for Atas. May 23, 2022. Why do we need it? Halfway through the year, Atas really needs help reducing the trap. The condition can be seen in the photos.

2022 May 23

Santariškės, Vilnius, a 6-hour surgery begins in the morning. I must admit, accompanying a child to surgery was the hardest thing in my entire life. Seeing the child's tears when you can no longer be with him. The door to the surgical ward opens, and Atas leaves. Waiting is not easy, so I take my bike, agree with the staff that you are to be called immediately in case of an emergency, and ride around Vilnius. This is how I spend most of my time. I return to the hospital. To control my thoughts, I start reading the documents about the surgery and the exercises after it for the 15th time. The documents, if I'm not mistaken, are from the USA.

Time to meet Atas. The first two days after the surgery were really hard. The pain is severe, it's hard to roll over or turn on your side, but the hardest part is in the past. The surgery was a success and it's time to move on. After a couple of days, we start to have some vaginal intercourse. Exercises and tips in the documents above. It's hard to do exercises because of the pain, but you need to move because it helps the healing process faster.

We're tired of lying around, it's time to get up and look around the playroom or go outside. It's not easy to get up, we need motivation, or maybe go to the store!? Something we really want and have been dreaming about for several days.

We go to the store in a stroller, but there we find small, children's goods, strollers. Great support for the child to hold on, great motivation, so we try. And everything works out great.

Tip: a solid support, such as a stroller, "pull", walker will help the child start walking on their own faster. This will give them confidence and strength.

Before the operation, we collect information about the steps after:

1. After the operation, a splint is necessary, which would fix the foot in the correct position and enable the corresponding muscle groups to work.

2. Intensive therapeutic exercises, at least 2 times a year, to maintain the elimination of the trap after the operation and strengthen the muscles.

We write from our own experience, in the past tense (2022). In Lithuania, unfortunately, we do not have any recommended manufacturers of splints, so we are looking for companies on two fronts that can, are able to and have experience and good reviews. The same situation, and with the exercises needed after this operation:

1. For the splint, we find an orthopedic center in Poland - M&J corporation (https://mj-corporation.com/en). Many years of experience in production, knowledge of SDR and countless good reviews. More inside the article.

2. We find several centers for training:

   a) Olinek, Warsaw - https://olinek.com.pl/en/start-en/

   b) Walk This Way, England, Malta, USA - we are more interested in the Malta center (https://www.facebook.com/wtwmalta/)

3. c) Adeli Center, Slovakia - https://adelicenter.com/en/

But there is no point in sleeping, the next steps are: a brace to maintain the effect of the operation as long as possible. As I mentioned above, we find and contact the orthopedic center in Poland by phone and e-mail. M&J CORPORATION Sp. z.o.o

We need a brace now, and flights are really not cheap, so we decide to go by car, we will have to cover almost 1000 km, but we drive with our own transport, so we can stop at any time. We organize the trip and the meeting, invite our grandfather to the company and go.

At first glance, it seems that we have arrived in nowhere, because everywhere there are only private houses, but we quickly find the house where the center is located. Dominika, a specialist from the M&J center, greets us with a smile, we tell our situation, and we begin the examination.

I immediately understand that experienced specialists are working. The examination is specific and precise, focused on the goal of making an individual, comfortable and suitable brace. The difference in the legs, the rise, the tilt, the position when standing freely, the position of how the foot should be placed correctly, a cast of the leg is made, everything is checked again using the principle of several eyes. We choose two braces:

• https://mj-corporation.com/oferta/orteza-dafo-2/?v=3a52f3c22ed6 - the main one for constant wearing.

• https://mj-corporation.com/oferta/orteza-dafo-35/?v=3a52f3c22ed6 - the summer one, so that the leg does not heat up.

After a few weeks, the brace is made, and we meet the whole team in Poland for another meeting. The meeting is necessary because we check if everything is fine, if it is not tight, if the child feels comfortable, if the quality meets our expectations, the final parts are glued (toe lift, padding at the metal joints) and we are satisfied, this time, we fly home.

Advice if you are planning an operation, be sure to arrange in advance where you will make a splint, do early exercises and intensive rehabilitation.

Surgery and preparation:

• Tests - doctors will indicate what is needed

• Surgery

• Brace

• Exercises after surgery

• Intensive rehabilitation (2+ weeks recommended)

2022 Walk This Way Rehabilitation Center in Malta

After 8 weeks (if everything is fine, a doctor's approval is required) after the SRD operation, intensive rehabilitation can begin. It is advisable to do it for a longer period, at least 2 weeks and 2 times a year, to have a greater effect. In Lithuania, we do not have many specialists with such experience, so we find a center in Malta. Walk this Way is a widely known global center for children with disabilities, with branches in the USA, UK, and Malta. We agree on two weeks, one hour of sports every day.

First day

We got to know each other and told our story. Coaches Lorella and Kristina devote the entire day to assessing Ato. They do not need to ask what we want. They understand that everyone who comes is looking for help to strengthen their child, to help them improve. Was it surprising, partly yes, because in Lithuania a common question was, "what do you want us to do?", on the other hand, you understand from the first day that professionals work here.

The following days

Each child is individual, the exercises are adapted to meet the child's current needs. A plan is drawn up and the first day is over.

The training is intensive, the trainers work great, they are excellent at communicating with children, but on the other hand they are strict, no concessions, concessions or refusals. Every day the maximum result is sought, which pleases us, because we have not had such training before. And the simplicity is most surprising. There are no sophisticated training equipment, everything is done by the child's own strength, which leads to good results.

It is not easy for Atu, but he tries as much as he can. We combine training in the morning so that we can return home and take a nap, thus leaving time in the evening to enjoy the sun, the sea and new views. Tip: for the first time, an hour a day is more than enough, because the training is intense, a new place and new faces cause a little stress for the child, and there is no need to overdo it after the operation.

The last day

Summary. The main exercises that need to be done next are shown. We receive not only paper instructions, but also film / take photos of what is being done. The trainers recommend continuing the work that has been started, exercising at home or in other centers. We share the accumulated experience and material with the Vilnius University Hospital Santaras Clinics Child Development Center.

What a change

After the operation and training, Atas starts riding a bike. A huge achievement, because we couldn't do it before, because of his weak and twisted leg.

2022 November

We really liked the Walk This Way center. Atas got stronger, and we saw what years of experience mean. Since intensive training is needed like air, we are going back for another four weeks. Only this time we are coordinating 2 weeks of 2 hours a day. We are kindly received, Atas already knows the trainers, is braver and has grown a little. Although the trainers knows Atas, we start, like the first time, with a consultation, examination and then we start. Two weeks pass very, very quickly, and the result, like last time, is excellent! The photos and video show more than words.

After the surgery, the leg cramps significantly decreased, and we are very satisfied with the results.

Before

After

The most surprising thing is the true professionalism, when a simple ball or support becomes a real sports tool that works better than machines costing thousands. If you are interested in more information or need advice, please feel free to contact us by e-mail. We will share what we can! We end 2022 with a good mood.