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Ja olihan hän, kädet ja jalat kävi kuin sätkynukella. Toisin kuitenkin kävi. Poika oli hyvän matkaa toisella vuodella ennen kävelemään lähtöä. Tämä koko aika oli ollut hyvin levoton ja kivulias. Poika ei nukkunut, eikä oikein syönytkään. Itki ja itki, karjui ja vaikeroi.
Kävellä ei keritty vuottakaan kun alkoi ontuminen. Vasen jalka oli toisinaan vallan pois pelistä, toisinaan sillä kuljettiin klenkkaamalla. Ensimmäistä lääkäri reissua en unohda koskaan. Meidät kirjaimellisesti naurettiin pihalle. Kuulin olevani aivan yli hysteerinen, luulotautinen, huomionhakuinen ja mitä kaikkea. Tätä samaa rumbaa jatkui melkein kaksi vuotta, samoilla nauruilla ja toisinaan ivallakin, ”taas te? mikäs tällä kertaa”.
Tässä kohtaa olin niin sekaisin heidän mielestään että halusin vain erityislapsen ja minkä tahansa diagnoosin. Niinhän sitä jokainen äiti haluaa sairaan lapsen, vai kuinka se meni? Aloin pikku hiljaa itsekkin uskoa lääkäreiden puheet ja muistan monesti miettineeni, ”kyllä mulla on päässä vikaa, minä se olen joka tarttee hoitoo”.
Yllättäen poikaan alkoi ilmestyä pientä mustelmaa kauttaaltaan koko kehoon. Matka kävi yksityiselle lasten syöpälääkärille. Tiesin, että yksi ensimmäisiä leukemian oireita oli pienet mustelmat. Lääkäri oli mahtava. Ensimmäisen kerran tuntui, että meitä uskottiin ja otettiin tosissaan. Samalla reissulla jo pois suljettiin leukemia verikokeilla. Mustelmat osottautui naprokseeni mustelmiksi. Lääkäri teki lähetteen Tayssin reumatologille.
Ei mennyt aikaakaan, kun postilaatikkoon kolahti kutsu reumapolille. Lisää verikokeita, ultraa sekä magneettitutkimus. Me saatiin hoitoa ja tutkimuksia. Meitä ei epäilty eikä kyseenalaistettu. Aikaa meni muutamia päiviä, kun tayssista tuli puhelu, pojassa on seronegatiivinen lastenreuma. Puhelu tuli pojan isälle, perheemme tiedon vastaanottajalle. Isä hoitaa yleisesti meillä nämä ”ikävät uutiset” ja toimittaa ne minulle. Syy tähän on selvä. Hän ottaa tiedot vastaan asiallisesti ja rauhallisesti. Selvittää jatkotoimet ja pitää narut käsissä. Seuraava puhelu, tiedon vastaanottajalta minulle menee kutakuinkin näin, ”miksi,miksi, miksi taas me? *itkua* *huutoa* *jopa hullun naurua* ja lisää *itkua.
Reumaa alettiin välittömästi ja tehokkaasti hoitamaan Tayssin toimesta. Oli ”paikkareita”, tutkimuksia, lääkityksiä, kipu oli saanut kasvot. Enää ei lääkitty nimetöntä kipua, nyt lääkittiin kivun kasvoja reumaa.
Reuma eteni räjähdysmäisesti ja äkkiä lääkitystä jo kovennettiinkin. Siitä huolimatta reuma jatkoi kulkuaan ja lääkityksiä lisättiin. Kivut oli edelleen kovat, kroppa ei tahtonut kestää. Psyykekkin alkoi horjua. Pojasta tuli hyvin aggressiivinen ja pahantahtoinen. Iloinen symppis oli muuttunut suoraa saatanan kätyriksi. Tässäkin kohtaa hoitotaho toimi ripeästi ja juuri ennen joulua 2013 meillä oli kädessä kiireellinen lähete lasten psykiatrialle. Kodin viressä kulkee junarata, poika katseli rataa monesti todeten
”tuonne minä hyppään kun en enää jaksa” ”en jaksa, haluan kuolla”. Sanat kuultuna juuri 4 vuotta täyttäneen lapsen suusta oli kuin bensaa liekkiin, ne sivalsi ja satutti.
Tunsin olevani hyvin voimaton ja epäonnistunut.
Jouluna sain puhelun. Osastolla tayssissa on pojalle paikka. Paikka lasten psykiatrian osastolta. Nyt oli meidän päätettävissä, meneekö poika osastolle jouluksi vai pärjäämmekö vielä kotona. Me ei montaa kertaa isän kanssa mietitty, poika pysyy kotona. Paikka oli edelleen ja heti kun tulee tunne ettei enää pärjää niin pitää lähteä. Joulu tuli ja meni, muistikuvia tuosta joulusta on täysi nolla. Se oltiinko oikeesti pärjätty vai suoritettu, sitä en tiedä vieläkään.
Tammikuussa oltiin jälleen lääkärin edessä, tällä kertaa psykiatrian. Käynti kesti pari tuntia. Lääkäri jutteli, kyseli, me kerrottiin ja vastattiin ja minä tietenkin jälleen itkin. Kotona jo nauravat kun itken tv ohjelmillekkin. Parin tunnin käynnin päätteksi meille sanottiin, ”ei tämä lapsi masentunut ole, mutta saanko teettää AD/HD testit”Olihan poika vilkas ja levoton ollut aina, mutta pojat on poikia ja niin edelleen.
Testejä alotettiin ja tehtiin monia. Käyntejä oli sekä yksin pojalla että yhdessä vanhempien kanssa. Keväällä 2014 saimme käteen paperin, Diagnoosi AD/HD. Tuo pieni ihmisen alku oli vasta 4 vuotias, mutta kestänyt enemmän kuin moni koko elämän aikana. Syksyllä 2014 aloitettiin lääkitys myös tähän bonukseen. Lääke antoi äkkiä vasteen ja elämä tältä osalta rauhottui. Pariin vuoteen ensimmäisen kerran näin sen tutun leveän hymyn, pienet kädet jotka kietoutui kaulaan eikä enää lyönyt. Lääkkeen alusta ensimmäisen viikon poika istui sylissä, hymyili ja silitteli. Seuraavan viikon istui lattialla ja rakensi legoilla, kolmas viikko piirrettiin ja piirrettiin. Se taiteen määrä oli loputon. Neljäs viikko katseltiin elokuvia ja luettiin kirjoja. Kuukauden aikana poika teki kaiken mitä meillä ei ollut pariin vuoteen näkynyt. Aurinko oli palannut.
Taas mentiin vuosi eteenpäin ja oltiin 2015 syksyssä. Nyt alkoi eskari ja sehän jännitti kaikkia, eniten varmasti äitiä. Se osottautui kuitenkin turhaksi. Reuma jatkoi menojaan, mutta ADHD oli hallinnassa. Samana vuonna kiinnitettiin huomiota pojan pieneen kokoon ja näin alkoi lisäravinteet tueksi ruokavaliolle. Kasvu oli edelleen hidasta jos sitä oli ollenkaan.
Vuosi 2016 toi tullessaan jälleen uutta. Kasvua ei enää tapahtunut. Nyt oltiin siis jo endokrinolokisessa yksikössä. Tehtiin unenaikainen kasvuhormonimääritys sekä laaja-alainen aivolisäkerasitus. Klassinen kasvuhormonivajaus oli poissuljettu, kuten lääkäri epäilikin käyvän. Juuri ennen joulua saimme taas bonuksen, kädessä paperi jossa diagnoosi lyhytkasvuisuus. Pojalla alkaa kasvuhormonihoito.
Tässä seitsemässä vuodessa on myös saatu silmälasit vaikeaan hajataittoon, silmissä on ollut iriitti, vauvaiän infektioastma puhkesi astmaksi. Vielä tälle vuotta on luvassa yökyläily tayssiin, epäilynä uniapnea.
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