Nectaria

Azi vreau sa v-o prezint pe Nectaria, o fetita extrem de dulce care tocmai a implinit un an si patru luni. Ea are o afectiune cromozomiala foarte rara: cromozom in inel 13 (un cromozom din perechea nr 13 a suferit o deletie-pierdere de material genetic- iar apoi a luat forma unui inel). Aceasta afectiune implica si modificari cerebrale importante. In ciuda prognosticului destul de sumbru, Nectaria traieste, infloreste si face progrese.

Din punct de vedere motor, Nectaria este pe la 3-4 luni (se rostogoleste pe lateral si uneori si pe burtica, are un control partial al capului). Face terapia vojta si elemente de terapie Anat Baniel (e vorba de relationarea intre diverse segmente ale corpului si multitudinea de miscari pe care le poate face si simti copilul; conditia este ca cel mic sa accepte pozitiile si sa fie atent astfel incat creierul lui sa receptioneze informatia). Lucreaza cu flashcards si cu programe de stimulare vizuala de pe youtube (imagini contrastante) pe care le urmareste cu interes.

Parintii i-au cumparat o palnie pentru stimularea vestibulara (Palnie de echilibru Mini Top), care ii place foarte mult:

De asemenea, i-au construit little room– un spatiu care sa o stimuleze din mai multe puncte de vedere: se invata relatia spatiala dintre jucarii, sus fiind plexiglas, ii pun Nectariei tableta cu programe de stimulare vizuala. In plus mai are si o lampa de la Philips care schimba culorile- ii place foarte mult, iar pe pereti sunt imagini de stimulare vizuala:

Doamna psiholog Gabriela Jianu descrie aceasta little room ca fiind „o mică camera senzorială , care oferă copilului posibilitatea învăţării active ,prin acţiunea directă cu obiectele, care ajutăla orientarea spaţială într-un mediu limitat. Ea consta „dintr-un cadru de metal sau lemn ,3 panouri laterale şi un plafon din plexiglass din care obiectele sunt suspendate cu elastic ,astfel încât copilul să le poată apuca, iar ele sa revină la poziţia iniţială”.

De asemenea, Nectaria mai foloseste  o placa de rezonanta:

Placa de rezonanta este descrisa de Gabiela Jianu ca fiind- „o placă din lemn pusă pe un cadru tot din lemn. O  calitate deosebită a plăcii este că orice mişcare pe suprafaţa acesteia va produce un sunet amplificat şi vibraţii. Placa de rezonanţă vibrează la muzică şi la voci ,chiar dacă sunetul nu este în contact direct cu suprafaţa de lemn. Pentru copiii cu deficienţe senzoriale multiple amplificarea sunetului este importantă ,dar perceperea vibraţiilor care însoţeşte sunetul va avea efect de stimulare imens, mai ales dacă copilul este întins pe placă”.

Aceste echipamente sunt create de dr. psiholog Lilli Nielsen din Danemarca.

Cu ajutorul acestor echipamente de stimulare, Nectaria face progrese si se dezvolta neasteptat de bine pentru diagnosticul ei.

Despre fiecare dintre aceste echipamente de terapie vrem sa povestim in detaliu in curand.

Multumim Nectariei si parintilor pentru ca au impartasit cu noi povestea lor si ceea ce au invatat pentru a o ajuta pe fetita.

The Pajama Project

Cati e o fetita tare binecuvantata. Isi face prieteni in toata lumea si raspandeste dragoste peste tot.

In America, bunaoara, are prieteni multi copii cu trisomii rare. Doi dintre ei- Phillip (PT9) si Kingston James (FT13) i-au trimis pijamale. Pijamale pufoase de fetita (dar si de baietei pentru fratior, asa ca suntem „acoperiti” si la capitolul acesta), din polar, numai bune pentru stat pe podea si exersat in zile ploioase sau geroase:

Noi ne-am simtit tare binecuvantati prin aceste pijamalute deosebite, care se gasesc cu mare greutate in Romania.

De aceea, ele vor face parte din „fondul special de pijamale”, care vor trece de la Cati la alte fetite si baietei cu trisomii rare sau anomalii cromozomiale rare. Noi avem deja 3 mici prietene pe lista noastra, insa m-as bucura mult sa-mi dati de stire daca mai exista copii in Romania cu T13, T18 sau alte trisomii rare, sa le spuneti despre proiectul pijamalelor si despre grupul de suport pe care incercam sa il construim astfel in tara noastra.

Multumim!

Copiii cu trisomii recomanda: Tumzee

Today we celebrate Trisomy 18 (Edwards Syndrome)  Awareness Day.

Lilliana is as sweet as her name- a 22 month old little girl, surviving with Trisomy 18. It is impossible not to love Lilliana, if you see her pictures and follow her story! She is making great progress, too, due to therapy (Conductive Education)  and a very devoted family. You can watch her story here:

Lilliana’s mother recommends for tummy time the Tumzee pillow. I couldn’t stress enough the importance of tummy time for Cati. I wish I had provided Cati with more tummy time opportunities. So I find the Tumzee really useful:

For the babies who cannot roll over yet, or for those who need to strenghten their neck muscles, the Tumzee may be a really good support:

Thank you, Lilliana and Rhonda for your recommendation!

 

Astazi este ziua internationala a Trisomiei 18- Sindromul Edwards.

Lilliana este o fetita tare dulce cu Trisomie 18. Tocmai a implinit 22 de luni si face progrese, gratie terapiei si devotamentului parintilor. Este imposibil sa nu o iubesti, daca ii urmaresti povestea.

La Lilliana am vazut prima oara perna pentru stat pe burta Tumzee, excelenta  pentru bebelusi mici si copii cu nevoi speciale care nu se pot rostogoli inca, sau care nu isi tin bine capul (statul pe burta ajuta mult la intarirea muschilor gatului si spatelui).

Eu am accentuat mereu cat de important a fost statul pe burta pentru Cati, si cat de bine ar fi fost sa o pun mult mai mult decat am facut-o pana acum.

Multumnim pentru recomandare, Lilliana si Rhonda!

 

Copiii cu trisomii recomanda: Exersaucer

When Cati was about 3 months old, I was introduced in the trisomy 13 community, that I found via Living with Trisomy 13 site.  I joined the yahoo group, the Facebook groups, read all stories on every site and blog I could find. I payed attention to what other people found helpful for the development and comfort of their children, and if I could purchase that item, I would.

Trisomy mommies suggested the Bumbo seat and the exersaucer as two important „helpers”, so I bought both (had them shipped from the UK, as you cannot find a Bumbo seat in Romania). Well, it turned out I didn’t use the Bumbo seat too much- Cati had poor head control and would arch backwards, making the seat very unsafe for her.  We didn’t use the Exersaucer too much, either, the first year we had it. I didn’t force Cati on the sitting position because the muscles of her back were not ready to support her backbone, and I didn’t want to risk scoliosis. For us, it proved to be the right decision at that time.

A couple of months ago I met (on line) Mr. Sam Sansalone, Katya’s father. Katya is a wonderful young lady with full Trisomy 13, and here mere picture is able to brighten my day in the most complete way. She is pure joy, and she is doing pretty well. I asked Sam to give me some tips for Cati’s development, as Katya could walk unassisted and seemed well developed for a full T13 diagnosis.

Sam mentioned the Exersaucer. I’ll quote his entire answer, hoping it will prove as useful for you, as it was for me:

To answer your question, Katya was 5 years old when she started being completely independent in her walking (i.e., no longer with any walker or other assistive device). There will be lots of suggestions, tips, and knowledge I can share that may help your daughter learn to walk as best as possible and very likely completely independently within a few years. It will be lots of work and time on your part, but very much worth it.

I had to innovate new ways of helping a child like Katya learn to walk because the traditional, usual approaches have not proved to work well with T13 kids (largely due to their very ‘slow’ way of learning and responding neuromotor-wise). The high-profile healthcare facility that helped during Katya’s walker-training stage was initially very resistant to some of my key ideas because they considered them bordering on ‘unsafe’ as they made it more likely for the child to lose control in the walker. But these new techniques and approaches were not unsafe – they simply required more diligent supervision by the parent (really diligent supervision).  Eventually this facility (Holland Bloorview Kids Rehabilitation Hospital) accepted and then even lauded the principles and techniques I had proposed and implemented for my daughter.  They even invited me after that to be on a development team for a new walker they were developing. So many advantages for various people could result from the hard work you do as a parent on behalf of your special-needs child and the community.

And have you ever heard of the Exersaucer? It’s an infant sitting-up chair that has a circular shelf/table all around the circumference, a freely-rotating seat, and collapsible ‘tripod’ feet that allow it to convert to a standing rocker. I am guessing if you can get one of those it will be a boon to Cati’s upright sitting. And, you’re right – that is a very important step towards walking and other upright mobility moves. There appear to be many different models now. I think it’s important to get one that has the rocker bottom option. Basically, the rocking feature is one of the ways that Katya managed to learn the concept and dynamics of left/right weight transfer, back and forth. That is an integral concept and motion for walking. When we walk, the biomechanics of it is that we must swing with momentum from side-to-side as we take steps in order to transfer sufficient weight+momentum to the other side while taking each step –i.e., so we can take each step without falling to the side we are stepping from. We have to ‘throw’ our weight directionally to the next-step’s side and with a great deal of precision and finesse. It will take untold thousands upon innumerable thousands of iterations of this dynamic for a child like ours to finally ‘get it’. The Exersaucer is one of the key methods I used to formulate that part of Katya’s „neural network” for walking capability. There is much more, of course, but in Katya’s case this was a vital, major part and step. I highly recommend the Exersaucer.

Here is the oppinion of a Down Syndrome parent on the Exersaucer. Here is the oppinion of an Occupational Therapist/mom about the same issue.

I asked Bob Doman about the use of the Exersaucer and he allowed Cati to use it a couple of times a day, but no more that 10-15 minutes once.

In Cati’s case, the Exersaucer had a double benefit: on one hand, it helped Cati with head control and upper body control, as well as taught her to push her feet, and so she started supporting her weight on her feet (a thing she didn’t do before). On the other hand, Cati learned pretty fast how to manipulate the toys on the Exersaucer’s table- and there are lots of different ones: to push buttons, turn pages, lift flaps, spin, pull. Although we didn’t use it for the first whole year, it proved very useful in the end. We bought ours second hand, and payed less than half of what we’d have payed for a new one.

(In curand, versiunea in limba romana).

Copiii cu trisomii recomanda: Ginko Biloba si ulei de cocos

I personally do not fancy neurotonic medication, even if it as been proved helpful in some cases. It is a custom in Romania for neurologists to prescribe medication that would stimulate the brain, but we didn’t try it with Cati.

I would rather attempt the natural approach, if I were to choose one. I had previously heard about the benefits of Ginko Biloba on Down syndrome children, and I wanted to give it a try with Cati, yet I was always postponing it.

Summer

So, when I heard Abir , Summer’s mom, talking about Ginko Biloba and coconut oil added to her daughter’s diet with amazing results, I was more than willing to try it with Cati, too. Summer is a beautiful little girl, with the same diagnosis as Cati- full trisomy 13.

„Summer, our daughter FT13 had never babbled or smiled for us before, and she always seemed unaware of us. About a month plus ago I started Summer on Ginkgo Biloba, and within a week she started the babble with huge big smiles, and much more aware of us around her.”

I added Ginko Biloba tea to Cati’s diet only this week, so I couldn’t tell you first hand about the benefits, but we started her on coconut oil about 3 weeks ago, and our happy, alert and hard working Cati seems to be happier and more alert, learns better and pays more attention and babbles more (which is a new thing with her, she was always so silent). With Cati’s poor diet, the addition of coconut oil couldn’t have been anything but beneficial, but what convinced me to do it was this video:

Here is another video on coconut oil and Alzheimer’s, and a very informative article about coconut oil and recipes.

Eu personal nu agreez medicatia neurotonica, chiar daca s-a dovedit a fi eficace in unele cazuri. Este un obicei al neurologilor din Romania sa prescrie neuro-stimulatoare, ne-au fost oferite si noua, insa nu le-am incercat pe Cati. Daca ar fi sa aleg, as opta mai degraba pentru suplimentele naturale. Citisem despre protocolul de medicatie pentru copiii cu Sindrom Down, care incepea cu doze destul de mari de Ginko Biloba, si mi-as fi dorit sa incerc cu Cati. Cu toate acestea, abia saptamana trecuta am inceput sa ii dau ceai de Ginko Biloba, deci prea multe despre beneficiile pe termen lung nu va pot spune.

Cand Abir, mama unei fetite foarte frumoase cu T13, a povestit despre rezultatele pe care le-a vazut dupa ce a introdus in alimentatia lui Summer Ginko Biloba si ulei de cocos, am decis ca pot face si eu asta pentru fetita mea.

Summer, fiica noastra cu T13 plina, nu gangurise niciodata si nu ne zambea direct, parand ca nu e constienta de prezenta noastra. Cu aproape o luna in urma am inceput sa ii dau lui Summer Ginko Biloba, si in mai putin de o saptamana a inceput sa gangureasca si sa ne zambeasca larg, mult mai prezenta si mai constienta ca suntem in jurul ei.

De cand am inceput si noi uleiul de cocos (pe care i-l pun in lapte, cate o mini-lingurita, ca de bebelus, de 2-3 ori pe zi), Cati este si mai alerta, iar schimbarea majora mi se pare mie cea care tine de vocalizare- gangureste mai mult, scoate sunete noi, daca si-ar coordona miscarile gurii cu sunetele ar putea spune „ma-ma”.

Aveti mai sus doua video-uri despre efectul uleiului de cocos in boala Alzheimer, care pe mine m-au convins sa il incerc cu Cati.

Noi il folosim pe acesta: Ulei de cocos (cu acest link puteti vedea si uleiul pe care il folosim noi, fabricat in Germania, si magazinul on line de unde l-am comandat eu).